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Originally Processed With FOIA(s): FOIA Number: S S FOIA MARKER This is not a textual record. This is used as an administrative marker by the George Bush Presidential Library Staff. Record Group/Collection: Donated Historical Materials Collection/Office of Origin: Frieden, Lex, Collection Series: Printed Materials Subseries: Papers/Books OA/ID Number: 52112 Folder ID Number: 52112-007 Folder Title: "The Disability Rights Movement: From Charity to Confrontation" [2001] Stack: Row: Section: Shelf: Position: Don't "Dis" Ability DON'T TREAD The MAI. REQUIRES ashington JUST D.C. Disability UAL ACCESS No Place ight There's Rights ote Movement ental Health FROM CHARITY TO CONFRONTATION alt CRIPS ARE Doris Zames Fleischer BEAUTI and Frieda Zames RT ITY IS SILENCE=DEATH The Disability Rights Movement The Disability Rights Movement From Charity to Confrontation Doris Zames Fleischer and Frieda Zames TC TEMPLE UNIVERSITY PRESS PHILADELPHIA Temple University Press, Philadelphia 19122 Copyright © 2001 by Temple University All rights reserved Published 2001 Printed in the United States of America @ 8 The paper used in this publication meets the requirements of the American National Standard for Information Sciences-Permanence of Paper for Printed Library Materials, ANSI z39.48-1984 Library of Congress Cataloging-in-Publication Data Fleischer, Doris Zames. The disability rights movement : from charity to confrontation / by Doris Z. Fleischer and Frieda Zames. p. cm. Includes bibliographical references and index. ISBN I-56639-811-8 (cloth : alk. paper) - ISBN I-56639-812-6 (pbk. : alk. paper) I. Handicapped-Civil rights-United States. 2. Discrimination against the handicapped-United States. I. Zames, Frieda, 1932- . II. Title. HVI553 .F58 2000 323.3-dc21 00-039282 To our mother and father, Pauline and Joseph Zames Contents Personal Notes xiii Preface XV Acknowledgments xix Chronology xxi Abbreviations and Acronyms xxvii I. "WHEELCHAIR BOUND" AND "THE POSTER CHILD" I FDR, the "Cured Cripple" I League of the Physically Handicapped 5 The March of Dimes 7 Parent-Initiated Childhood Disability Organizations 8 The Poster Child and the Telethon IO Changing Views of Disability in the United States II 2. SEEING BY TOUCH, HEARING BY SIGN I4 Blindness and Deafness: A Comparison I4 Sign Language and Oralism I5 Braille and Talking Books I8 Sheltered Workshops I9 The Lighthouse 20 Mobility for Blind People: Guide Dogs and White Canes 20 Jacobus tenBroek and the National Federation of the Blind 2I VIII CONTENTS NYC Subway Gates: A Controversy in the Blind Community 22 NFB: Trailblazer for Sections 504 and 50I 24 NFB and ACB: Different Approaches to Blindness 25 Deafness as Culture 26 American Sign Language 27 The Gallaudet University Uprising 28 Black Deaf Advocates 29 Education of Deaf Children 30 Helen Keller, the Social Reformer 3I 3. DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 33 Deinstitutionalization 33 Early Accessibility Efforts in the Colleges 36 Ed Roberts and the Independent Living Movement 37 Proliferation of the Independent Living Concept 43 Characteristics of Independent Living Centers 45 Independent Living as an Extension of Rehabilitation 46 Evaluation of the Independent Living Movement 47 Independent Living and the New Disability Activism 47 4. GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 49 The Cherry Lawsuit for the Section 504 Regulations 50 Section 504 as a Spur to Political Organizing 5I ACCD, Propelling Section 504 52 The Section 504 Demonstrations 53 The Transbus Controversy 56 Accessible Transit and New York City 57 Bay Area Rapid Transit (BART) 63 California Accessible Buses 64 Mainstreaming Public Transit 65 The Civil Rights Significance of Accessible Transportation 69 CONTENTS IX 5. THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 7I Disabled In Action 71 New York Lawyers for the Public Interest 76 Recognizing Disability as a Civil Rights Issue 77 Disability Rights Education and Defense Fund 77 The Need for Disability Rights Attorneys 79 ADAPT 82 Justice For All 85 6. THE AMERICANS WITH DISABILITIES ACT 88 Enacting the ADA 89 The ADA and Section 504 93 Title I: Employment 95 Title III: Public Accommodation 95 Title II: Public Services (State and Local Government) 98 Title II: Public Transportation IOI Title IV: National Telephone Relay Service IOI Title V: Miscellaneous IOI The Supreme Court and the ADA IO2 The Myth of "The Disability Lobby" 105 Backlash I06 Every American's Insurance Policy I09 7. ACCESS TO JOBS AND HEALTH CARE по Employment Discrimination IIO Affirmative Action III Disability Employment in Corporate America II2 Employment of People with Developmental Disabilities II3 Employment of People with Psychiatric Disabilities II4 The Criminalization of People with Psychiatric Disabilities II7 Different Approaches to Psychiatric Disabilities II8 Mangled Care I2I X CONTENTS A Two-Tier Health Care System I2I People with Special Needs in Managed Care 123 An Arbitrary Patchwork I24 Falling through the Cracks: Children with Special Health Needs I26 Long-Term Care in the Community I27 Health Policy Reforms I28 The Nexus between Jobs and Health Care 129 8. "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 132 Opposition to "the Death Train" 132 The Supreme Court 133 AIDS Activists 134 Pain Management 135 Focus on Cure: A Pernicious Message 137 The Eugenics Movement and Euthanasia I38 The Politics of Physician-Assisted Suicide I40 Netherlands "Slippery Slope" VS. U.S. "Political Strategy" I4I First-Year Report on Physician-Assisted Suicide in Oregon 142 Legalizing Disability Discrimination 142 Dangers of an Inflexible Law I43 "A Better Solution" 144 The Distinction between Severe Disability and Terminal Illness 145 9. DISABILITY AND TECHNOLOGY I49 Universal Design 149 Accessible Taxis I52 Teletypewriters and Relay Systems 152 A Clash of Cultures I53 The One-Step Campaign 153 Wheelchair Ingenuity I54 Accessible Classrooms and Laboratories I55 The Computer as an Accommodation 156 Psychopharmacology I58 CONTENTS XI Bioethical Dilemmas 159 The Internet and a Miracle Baby I62 Medical and Genetic Information I63 "Slash, Burn, and Poison" I65 Transforming Scientific Orthodoxy: AIDS Activism 166 Toward a New Vision: Three Queries I68 IO. DISABLED VETERANS CLAIM THEIR RIGHTS I70 Legislation and Self-Advocacy 170 Rehabilitation: The Man, Not the Wound 172 Paralyzed Veterans of America 173 Automobiles: Opening "New Vistas" 174 The Pattern of Denial I76 Atomic and Chemical Guinea Pigs 179 Holding a Nation Accountable 181 II. EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT I84 A "Quiet Revolution" 184 Enforcing the IDEA: Early Efforts 185 Least Restrictive Environment 187 An Appropriate Identity 188 The IDEA in the Courts 189 The Special Education Controversy I93 Somnolent Samantha 197 A Microcosm of the Real World 199 I2. IDENTITY AND CULTURE 200 Three Strands of the Movement 200 Disability Pride: Celebrating Difference 201 Changing Perceptions and the Media 207 Assessment of the Movement 2II A Stealth Movement 2I5 Notes 217 Index 265 Personal Notes IN THE EARLY 19 50s I attended Brooklyn College, located on a campus built in the 1930s in the pseudo-Georgian style of the 1830s. In order to enter the two main buildings, Boylan Hall and Ingersoll Hall-mirror images facing each other across a central quadrangle-I had to go up two steps. On rainy days I was terrified of falling because my crutch tips would slip. Snowy or icy days were worse. Never once at Brooklyn College did I think that those two steps in any way could be changed. I had to make do as best I could. I thought that it was my responsibility to fit in. I felt lucky just going to college since relatively few people with disabilities had such an opportunity at that time. It never occurred to me to ask for anything, certainly not to make demands-not even for a banister. Why did most people with disabilities of my generation and many that followed-some of whom even gained considerable prominence in the modern disability rights movement- make the same assumption that I did? What caused the leap in consciousness of people with disabilities in the 1970s? How did this new vision give birth to a civil rights movement for people with disabilities? How has this civil rights movement affected people with disabilities as well as the wider society? These are the questions that inform this book. -Frieda Zames The most important thing that ever happened to me occurred two years before I was born. My sister (and now my coauthor) contracted polio. Despite her stay in a hospital and convalescent home during my first five years, she was always a presence in my life. In our home, my entire family and our circle of friends celebrated every one of my absent sister's birthdays. My parents even "conned" me into thinking that each of the frequent long train and bus rides that we took to visit her was a treat. Although I was too young to be allowed into the hospital, I loved standing outside and waving to her, for to me she was Rapunzel high up in the tower. When she came home and solved my problems and taught me how to fight back, I imagined myself the hero for rather absurdly holding up my five-year-old fingers to traffic in the middle of the rather empty streets near our house as she slowly crossed using her crutches and braces. The much publicized Chair in Bioethics at Princeton's Center for Human Values, Peter Singer, wrote in Practical Ethics, a book he assigned in his course at the university: "When the death of a disabled infant will lead to the birth of another infant with better prospects XIV PERSONAL NOTES of a happy life, the total amount of happiness will be greater if the disabled infant is killed." If my parents somehow could have known that at two and a half my sister would become disabled, and had they chosen the path that Professor Singer prescribes, would his Benthamesque vision of the greatest good for a greatest number have been achieved? To respond to this question, I think of the many nondisabled people I know who have not lived lives as productive or fulfilling or happy as my sister's. When I consider her social roles as mathematics professor and disability rights activist, her loving personal relationships, and the daily lessons in living I have learned from her, I don't know about that other sibling who might have taken her place. And the point is, neither does Professor Singer. But I do know one thing for certain. I'm not ready to trade her in. -Doris Zames Fleischer Preface IN THE ANATOMY OF PREJUDICE (1996),¹ Elisabeth Young-Bruehl analyzes what she believes to be "the four prejudices that have dominated American life and reflection in the past half-century-anti-Semitism, racism, sexism, and homophobia."2 No reference is made to disability discrimination. Misrepresented as a health, economic, technical, or safety issue rather than discrimination, prejudice based on disability frequently remains unrecognized. Although disability bias impacts upon a great many people, often with devastating consequences, Young-Bruehl's omission is not surprising. R. C. Smith, author of A Case About Amy (1996)³-an analysis of the 1982 Supreme Court ruling that denied a public school accommodation of a full-time sign-language interpreter for Amy Rowley, an extremely intelligent, profoundly deaf child-observes: Unkind words against homosexuals, African-Americans, Hispanics, and other minorities at least prompt rebuke from people who, though not members of these stigmatized groups, still recognize the prejudice. But prejudice against individuals with disabilities commonly goes undetected by a general public too unaware of its own feelings to recognize what has been said or written as prejudicial.4 Perhaps this oversight stems from a collective fear of disability since everyone is subject to illness, accident, the declining powers of advanced age-all forms of human vulnerability. "Handicapism," also referred to as "ableism," is the only "ism" to which all human beings are susceptible.5 This denial of the reality of disability results in stereotypes that continue to prevail. Films present people with disabilities either condescendingly as "inspirational," endeavoring to be as "normal" as possible by "overcoming" their limitations, or as disfigured monsters "slashing and hacking their way to box office success."⁶ The inspirational figure hearkens back to Tiny Tim from Dickens's A Christmas Carol, a receptacle for the pity of those who did not have poor Tim's misfortune. In fact, "in the nineteenth century notion of charity, afflicted [the term used at the time for the disabled] people might be said to be created in order to provide opportunities for Christian folk to exercise their Christian virtue." In the process, the lucky nondisabled could surreptitiously celebrate their superiority while simultaneously imagining that, by means of their charity, they were imitating the life of Christ. XVI PREFACE When the authors of this book began their work over five years ago, the issue of disability rights had not yet entered into the public consciousness. Although President George Bush had signed the Americans with Disabilities Act (ADA) in 1990, which gave people with disabilities many of the same civil rights won by other groups, the struggle of the disability community to secure these rights appeared to lack the drama of the struggles of African Americans or women and indeed did lack the media attention. Even the controversy regarding an appropriate memorial for Franklin Delano Roosevelt, which did attract media attention, pointed to the surprising invisibility of disability and to a lack of awareness of the profound separation of images of power (the Presidency) and images of disability (the wheelchair). Disappointing as actor Christopher Reeve's emphasis on spinal cord regeneration, rather than disability rights, has been to many in the disability community, his struggle-after an accident left him quadriplegic-did catch the attention of a public watching a superman who once flew, but now cannot walk, re-create his life. Until recently, the media did not seem cognizant of the significant number of people with disabilities in the United States (not to mention the rest of the world), nor the degree to which "invisible disabilities" such as psychiatric disorders, heart disease, diabetes, cancer, and learning disabilities predominate over visible ones. According to 1994-1995 data, over 20 percent of Americans-fifty-four million-were disabled, with almost half of them having severe disabilities.⁸ As a consequence of medical and technological progress, the disability and the aging populations will continue to grow. It is not surprising that as people age, the probability increases that they will become disabled, and the likelihood of that impairment being severe also increases. What is surprising is the prevalence of disability for specific age groups: almost one-fourth of people forty-five to fifty-four, over one-third of those fifty-five to sixty-four, almost one-half of those sixty-five to seventy-nine, and almost three quarters of those eighty years and above. The public's avoidance of acknowledging the ever-threatening possibility-and after a certain age, probability-of disability is not unexpected. Yet, the results of a 1998 study- indicating that even for adults with disabilities, only 54 percent have heard of the ADA9- reveals that despite the social and political gains achieved by disability activists in the past twenty years, the educational challenges ahead are significant. For example, the failure to select a handicapped-accessible site for the December 3, 1997, Presidential Conference on Race in Akron, Ohio, illustrates how often the pervasiveness of disability is unappreciated; officials did not consider that people with disabilities are included among racial minorities. Almost a decade after passage of the ADA, this landmark legislation fueled by the civil rights movement is being seriously challenged in the courts. In 1999, the U.S. Supreme Court ruled in three separate employment cases that physical impairments that can be controlled by medication or assistive devices did not constitute a "disability" under the Americans with Disabilities Act. More threatening, however, to the viability of the ADA are challenges to the constitutionality of Title II of this law. In the year 2001, the Supreme Court is expected to rule in Garrett v. University of Alabama on whether Congress has the authority under the "equal protection" clause of the Fourteenth Amendment to ban discrimination by states against individuals with disabilities. In 2000, the Court, in Kimel v. Florida Board of Regents, invoking the doctrine of "sovereign immunity" as embodied in the Eleventh Amendment, held that Congress lacked the power to require states to pay damages for violations of another federal statute-the Age Discrimination in Employment Act. A decision against plaintiff Garrett could eliminate Title II's ban on discrimination PREFACE XVII against people with disabilities by state or local governments in any sphere-employment, access to public services, education, health care, or other programs administered by states and localities.¹⁰ Because many people with disabilities require "reasonable accommodation"¹¹ under the ADA in order to achieve equality, civil rights for this population are in jeopardy. While critics of the ADA overestimate the cost of such accommodation, they also underestimate the cost of discrimination, not only to individuals with disabilities, but also to society in general. The U.S. Senate recognized this frequently untapped potential in people with disabilities when, on June 16, 1999, it passed by a vote of 99 to o the long-overdue Work Incentives Improvement Act permitting those who require health care benefits to work without losing such benefits. On that occasion Senator Edward M. Kennedy (D-Mass.) declared, "We must banish the patronizing mind-set that disabled people are unable. In fact, they have enormous talent, and America cannot afford to waste an ounce of it."¹² This book is an effort to document the enormous talent that brought forth the disability rights movement. Acknowledgments WE WOULD LIKE TO acknowledge the valuable contributions of the following people: Samuel W. Anderson, Michael Auberger, Rims Barber, Sylvia Bassoff, Kim Baxter, Elizabeth Benjamin, Philip Bennett, Marcia Bernstein, Frank Bowe, Marca Bristo, Dale Brown, Paul Camacho, Dennis Cannon, Daniel Carr, Judi Chamberlin, James Cherry, Ira Cochin, Judith Cohen, Diane Coleman, Gerald R. Costa, Alice Crespo, Justin Dart, Anne Davis, Jim Davis, Mary Delgado, Susan Dooha, Marya Doonan, Melinda Dutton, Anne Emerman, Tod Ensign, Robert Fasano, Fred Fay, Keith Frank, Eunice Fiorito, Barbara Fisher, A. E. Foster, Lex Frieden, Tim Fuller, Martin Gensler, Ellen Gerson, Stephen Gold, Karen Luxton Gourgey, John C. Gray, Mark Green, Richard Greer, John Gresham, Rachelle Grossman, Joe Harkins, Florence Haskell, Eileen Healy, Paul Hearne, Nelson Hendler, Ilse Heumann, Judith E. Heumann, Alan Hevesi, Olga Hill, Catherine Huynh, Paul Jendrek, Blanche Kwas Johnson, Susan Jouard, Lois Kaggen, Martin Katzen, Bruce Alan Kiernan, Sherry Lampert, Nadina LaSpina, Martin Leff, Robert and Toby Levine, Edward Lewinson, Diane Lipton, Edward Litcher, Paul Longmore, Kitty Lunn, Robert Lynch, Nicholas M. and M. M., Sandra Marlow, Carr Massi, Rosemarie McCaffrey, Michael McCann, John M. McNeil, Terence Moakley, Marilyn Newman, Raphael Nisan, Ellen Nuzzi, Roxanne Offner, Marcia Osofsky, Celeste Owens, Harvey Pacht, Sandra Parrino, Gary Pitts, Keisha Powell, Rami Rabby, James Raggio, Daniel Robert, Edward Roberts, Nancy Rolnick, Phyllis Rubenfeld, Lani Sanjek, Marilyn Saviola, Susan Scheer, Robert Schoenfeld, Carmen Silver, William Skawinski, Eleanor Smith, Mary Somosa, Richard Spiegel, Marvin Spieler, Steven Stellman, Jean Stewart, Paul Sullivan, Karen Tamley, Arthur Teicher, Marvin Wasserman, James Weisman, Judith Wessler, Harry Wieder, Charles Winston, Barry Winthrop, Arthur Wohl, Sidney Wolinsky, Alexander Wood, Deborah Yanagisawa, Ernest Zelnick, Barbara Zitcer, Gerry Zuzze. Special thanks to Michael Ames, for his wise editorial counseling and his continuing encouragement and support; Leonard Fleischer, without whom this book could not have been written-like Faulkner's Dilsey, he endured; Michael Imperiale, for providing us with supplies and the nourishment we needed to take on and complete this project; the helpful people at Temple University Press-Charles Ault, Jennifer French, Tamika Hughes, and Irene Imperio; and Yvonne Ramsey, for her patience, editing acumen, and good humor. Chronology 1817 The first school for deaf students in the United States is established in Hartford, Connecticut. 1829 Louis Braille invents the raised dot system for the blind known as Braille. 1841 Dorothea Dix begins her efforts to improve conditions for people with disabilities incarcerated in jails and poorhouses. 1864 The National Deaf-Mute College-known as Gallaudet College in 1954 and later Gallaudet University-is established. 1880 The Congress of Milan bans the use of sign language in schools for deaf people. - The National Association of the Deaf is founded. 1903 Helen Keller publishes her autobiography, The Story of My Life. 1904 Winifred Holt Mather establishes Lighthouse No. I for blind people in New York City, the first of many throughout the world. 1909 Clifford Beers, author of A Mind That Found Itself, organizes The National Committee for Mental Hygiene, later known as The National Mental Health Association. 1914 The War Risk Insurance Act becomes law. 1917 The Smith-Hughes Vocational Education Act becomes law. 1918 The Smith-Sears Veterans Rehabilitation Act becomes law. 1920 Disabled American Veterans of the World War is founded-later known as Disabled American Veterans. - The Smith-Fess Vocational Rehabilitation Act becomes law. 1921 The American Foundation for the Blind is founded. - Franklin Delano Roosevelt contracts polio. I The United States Veterans Bureau is established-later known as the Department of Veterans Affairs. 1922 Edward F. Allen establishes the National Easter Seal Society in Elyria, Ohio. 1923 Henry Kessler, a pioneer in rehabilitation medicine, initiates surgical techniques that allows muscular control of artificial limbs. 1927 Franklin Delano Roosevelt co-establishes the Warm Springs Foundation. 1929 Dorothy Harrison Eustis and Morris Frank found Seeing Eye, the first guide dog training school in the United States. XXII CHRONOLOGY - National Easter Seal Society establishes Rehabilitation International. 1932 Franklin Delano Roosevelt is elected President of the United States. 1935 The League of the Physically Handicapped is organized; it disbands in 1938. The Social Security Act, providing federal old age benefits and grants to the states for assistance to blind people and children with disabilities, becomes law. I937 The March of Dimes is founded. The National Foundation for Infantile Paralysis is founded. I940 Jacobus tenBroek organizes the National Federation of the Blind in Wilkes-Barre, Pennsylvania. I943 The Barden-LaFollette Act dealing with vocational rehabilitation becomes law. I947 Paralyzed Veterans of America is organized. 1948 Tim Nugent initiates services and a sports program for students with disabilities at the University of Illinois, and the university institutes a paratransit system on its wheelchair accessible campus. 1949 United Cerebral Palsy Association, uniting all local cerebral palsy organizations in the United States, is founded. 1950 Elizabeth Boggs forms a parents' group working for improved services for children with developmental disabilities. - Gunnnar Dybwad and others organize the Association of Retarded Citizens, which later develops branches throughout the United States and the world. 1951 Howard Rusk opens the Institute of Rehabilitation Medicine at the New York University Medical Center in New York City. 1955 Jonas Salk develops the first successful polio vaccine. 1956 A law is enacted enabling people aged fifty or older to qualify for Social Security Disability Insurance. 1960 The Social Security disability program is amended to allow people under fifty to quality for Social Security Disability Insurance. - William Stokoe's paper on Sign Language Structure legitimizes American Sign Language and ushers in the movement of Deafness as culture. 1961 Former members of the National Foundation for the Blind found a new organization, the American Council of the Blind. 1962 Edward Roberts sues to gain admission to the University of California, the same semester that James Meredith requires a lawsuit to become the first black person to attend the University of Mississippi. 1964 The Civil Rights Act, which will impact significantly on subsequent disability rights legislation, becomes law. 1965 The Social Security Act is amended, establishing Medicare and Medicaid. I968 The federal Architectural Barriers Act becomes law. I Prodded by Harold Willson, the California state legislature guarantees that the Bay Area Rapid Transit system will be the first rapid transit system in the United States to accommodate wheelchair users. 1970 Judith E. Heumann organizes Disabled In Action in New York City. The Urban Mass Transportation Assistance Act becomes law. 1971 The Mental Patients Liberation Project is initiated in New York City, and similar projects begun by "psychiatric survivors" emerge throughout the nation. CHRONOLOGY XXIII 1972 Amendments to the Social Security Act allow recipients of disability benefits under the age of sixty-five to qualify for Medicare. - The appalling conditions at Willowbrook State School in New York City for people with developmental disabilities are exposed as the result of a television broadcast from the facility. - Demonstrations are held in Washington, D.C., by disability activists protesting President Nixon's veto of what will become the Rehabilitation Act of 1973. - Guide Dog Users is organized in New York City. Passage of amendments to the Social Security Act creates the Supplemental Security Income program. - Edward Roberts establishes the Center for Independent Living in Berkeley, California-a symbol of the Independent Living Movement emerging throughout the nation and the world. - U.S. District Court for the District of Columbia decides in Mills v. Board of Education that every school-age child is entitled to a free public education regardless of the nature or severity of the individual's disability. 1973 The Architectural and Transportation Barriers Compliance Board-later known as the Access Board-is established under the Rehabilitation Act of 1973 to enforce the Architectural Barriers Act of 1968. - The Rehabilitation Act of 1973, including Section 504, becomes law. 1974 The first convention of People First-the largest U.S. organization of and led by people with developmental or cognitive disabilities-is held in Salem, Oregon. 1975 The American Coalition of Citizens with Disabilities is organized in Washington, D.C. - Wade Blank relocates adults with severe disabilities from a nursing home into apartments, initiating what will become the Denver, Colorado, Atlantis Community. - The Education for All Handicapped Children Act, later known as the Individuals with Disabilities Education Act, becomes law. Edward Roberts becomes director of the California Department of Rehabilitation. 1976 James Cherry wins lawsuit (Cherry v. Mathews in U.S. District Court for the District of Columbia) requiring that the Secretary of Health, Education, and Welfare develop and promulgate Section 504 regulations. - Disabled In Action of Pennsylvania v. Coleman (known as the Transbus lawsuit) is filed in the Eastern District of Pennsylvania. 1977 Following nationwide demonstrations by disability activists, HEW Secretary Joseph Califano signs the regulations for Section 504 and the Individuals with Disabilities Education Act. - Lloyd v. Regional Transportation Authority is decided in U.S. Court of Appeals for the Seventh Circuit, establishing a private right of action under Section 504. 1979 U.S. Supreme Court decides Southeastern Community College v. Davis, a suit impacting on accessible public transportation. - Disability Rights Education and Defense Fund is founded in Berkeley, California. - The National Alliance for the Mentally Ill is founded in Madison, Wisconsin. 1980 Black Deaf Advocates is founded. XXIV CHRONOLOGY 1981 The year is designated as the International Year of Disabled Persons by the United Nations. 1982 The U.S. Supreme Court decides in Hendrick Hudson Central School District v. Rowley that there is "no Congressional intent to achieve strict equality of opportunity or services" in the Individuals with Disabilities Education Act. 1983 ADAPT, denoting American Disabled for Accessible Public Transit, is organized. Edward Roberts and Judith E. Heumann (together with Joan Leon) organize the World Institute on Disability in Oakland, California. 1984 The National Council on Disability becomes an independent federal agency. 1986 The U.S. Supreme Court decides in the Baby Jane Doe case (Bowen v. American Hospital Association) that parents' refusal of needed surgery does not violate Section 504. Irving Zola founds the Society for Disability Studies. 1988 The Gallaudet University uprising results in its first deaf president, I. King Jordan. The Fair Housing Act is amended to include people with disabilities. Civil Rights Restoration Act becomes law, in effect overturning the U.S. Supreme Court's 1984 Grove City College v. Bell decision regarding the discrimination on the basis of sex in federally assisted education programs or activities. 1989 ADAPT v. Skinner-decided by the U.S. Court of Appeals for the Third Circuit-helped pave the way for accessibility of public transportation. Ralf Hotchkiss establishes the Wheeled Mobility Center at San Francisco State College, from which his International Wheelchair Program emanates. Ronald Mace establishes the Center for Universal Design in Raleigh, North Carolina. Daniel R. R. v. State Board of Education (Fifth Circuit) in Texas-the first of four significant inclusion cases (from 1989 to 1994) involving children with developmental disabilities-results in consistent legal decisions that the Individuals with Disabilities Education Act mandated the integration of these children into regular classes with full supports. 1990 ADAPT now denotes American Disabled for Attendant Programs Today as the organization focuses on a new primary purpose. President George Bush signs the Americans with Disabilities Act into law. 1995 The American Association of People with Disabilities is established in Washington, D.C. Diane Coleman and others organize Not Dead Yet to oppose Jack Kevorkian and supporters of physician-assisted suicide. Justin Dart and others organize Justice For All in Washington, D.C. Billy Golfus's film, When Billy Broke His Head-a personal view of the disability rights movement-premiers on public television. 1996 The paradigm shift in scientists' characterization of the development of AIDS begins the process of changing AIDS from a fatal disease into a chronic one. Veterans Health Care Eligibility Reform Act (dealing with Vietnam veterans) becomes law. I997 The U.S. Supreme Court validates the state prohibition on physician-assisted suicide in Vacco v. Quill and Washington v. Glucksberg, while deciding that this issue CHRONOLOGY XXV is properly within the jurisdiction of the states. 1998 Persian Gulf War Veterans Act becomes law. - The U.S. Supreme Court decides in its first Americans with Disabilities Act case, Bragdon v. Abbott, that the act's definition of disability includes asymptomatic HIV. - The U.S. Supreme Court decides in Pennsylvania Department of Corrections. Yeskey that the Americans with Disabilities Act covers state prisons. 1999 The U.S. Supreme Court decides in Carolyn C. Cleveland v. Policy Management Systems Corp., et al. that people receiving Social Security disability benefits are protected against discrimination under the Americans with Disabilities Act if and when they are able to return to the work force. - The U.S. Supreme Court decides in Olmstead v. L.C. and E.W. that individuals with disabilities must be offered services in the "most integrated setting." - The U.S. Supreme Court decides in three employment cases, Sutton et al. v. United Air Lines, Inc., Murphy v. United Parcel Service, Inc., and Albertsons, Inc. v. Kirkingburg that individuals whose conditions do not substantially limit any life activity and/or are easily correctable are not disabled according to the Americans with Disabilities Act. The Work Incentives Improvement Act, allowing to work those who require health care benefits, becomes law. Abbreviations and Acronyms AAPD American Association of People with Disabilities AARP American Association of Retired People ABA Applied Behavioral Analysis ACB American Council of the Blind ACCD American Coalition of Citizens with Disabilities ACLU American Civil Liberties Union ACRMD Association of Children with Retarded Mental Development Act-Up AIDS Coalition To Unleash Power ADA Americans with Disabilities Act ADAPT American Disabled for Accessible Public Transit, later American Disabled for Attendant Programs Today AFB American Foundation for the Blind AHCA American Health Care Association AHRC Association for Help of Retarded Children AIDS autoimmune deficiency syndrome ALS amyotrophic lateral sclerosis AMA American Medical Association ANSI American National Standards Institute APTA American Public Transit Association ARC Association of Retarded Citizens (currently known as The Arc) ASL American Sign Language BART Bay Area Rapid Transit BCID Brooklyn Center for Independence of the Disabled BCIL Boston Center for Independent Living BDA Black Deaf Advocates CARR Committee Against Right on Red CHIP Child Health Insurance Program CIA Central Intelligence Agency CIDNY Center for Independence of the Disabled in New York CIL Center for Independent Living (Berkeley, California) DAV Disabled American Veterans XXVIII ABBREVIATIONS AND ACRONYMS DAVWW Disabled American Veterans of the World War DIA Disabled In Action DNR do-not-resuscitate (order) DREDF Disability Rights Education and Defense Fund DSP Disabled Students Program EEOC Equal Employment Opportunity Commission EPSDT Early Periodic Screening, Diagnosis and Testing EPVA Eastern Paralyzed Veterans Association ERB Emergency Relief Bureau FAHA Federal Aid Highway Administration FDA Food and Drug Administration GMHC Gay Men's Health Crisis HCFA Health Care Financing Administration HEW U.S. Department of Health, Education, and Welfare HILC Harlem Independent Living Center HMO health maintenance organization HPLSU Handicapped Persons Legal Support Unit HUD U.S. Department of Housing and Urban Development ICD Institute for the Crippled and Disabled, later International Center for the Disabled IDEA Individuals with Disabilities Education Act IEP individualized educational plan IL independent living ILC independent living center ILRU Independent Living Research Utilization (program) IYDP International Year of Disabled Persons JFA Justice For All JOB Just One Break LD learning disability LIU Long Island University LRE least restrictive environment MiCasa Medicaid Community Attendant Services Act MiCassa Medicaid Community Attendant Services and Supports Act MSA Medical Savings Account MTA Metropolitan Transportation Authority (New York City) NAAV National Association of Atomic Veterans NAD National Association of the Deaf NAMI National Alliance for the Mentally Ill NCD National Council on Disability NFB National Federation of the Blind NIH National Institutes of Health NMHA National Mental Health Association NOD National Organization on Disability NYLPI New York Lawyers for the Public Interest NYSCPD New York State Coalition of People with Disabilities OVR Office of Vocational Rehabilitation ABBREVIATIONS AND ACRONYMS XXIX PARC Pennsylvania Association for Retarded Children PH physically handicapped PVA Paralysed Veterans of America QILC Queens Independent Living Center SABE Self Advocates Becoming Empowered SDS Society for Disability Studies SILC Statewide Independent Living Council SKIP Sick Kids Need Involved People SSDI Social Security Disability Insurance SSI Supplemental Security Income TAB temporarily ablebodied TDD telecommunication device for the deaf TT text telephone TTY teletypewriter UCP United Cerebral Palsy (local organizations) UCPA United Cerebral Palsy Association (national organization) UMTA Urban Mass Transportation Administration USDOT U.S. Department of Transportation VA Veterans Administration VESID Vocational and Educational Services for Individuals with Disabilities WID World Institute on Disability WIIA Work Incentives Improvement Act WIN Wheelchair Independence Now, later Win Independence Now WPA Works Progress Administration The Disability Rights Movement Chapter One "Wheelchair Bound" and "The Poster Child" "HOPE FOR THE CRIPPLED" was the name President-to be one of the most significant of a postage stamp issued in 1970, said political figures of the twentieth century. Judith E. Heumann, current Assistant Sec- Yet both the nation and the man had an retary of the U.S. Department of Education obsession with the myth of his total recov- and quadriplegic wheelchair user, in her ery. FDR had to be seen, and had to see 1980 testimony to the United States Com- himself, as a "cured cripple,"2 not a person mission on Civil Rights.¹ The stamp pic- diminished by disability. As his wife Eleanor tured "a person seated in a wheelchair rising observed, however, the disability may have to a standing position [that] indicated what been a "blessing in disguise,"3 steeling and people thought of a disabled individual in sensitizing the man. According to historian a wheelchair. You are not considered to Doris Kearns Goodwin: be a whole person; however, once you are in this standing position-that is normal- The paralysis that crippled his body expanded his mind and his sensibilities. After what ity." In January 1999, the nation saw an- Eleanor called his "trial by fire," he seemed other image on their TV screens. Defending less arrogant, less smug, less superficial, more President Clinton from impeachment, the focused, more complex, more interesting. President's Chief Counsel Charles Ruff took He returned from his ordeal with greater center stage in the Senate chambers in his powers of concentration and greater self- wheelchair. How have our images of people knowledge. "There had been a plowing up of with disabilities (until recently called "the his nature," Labor Secretary Frances Perkins observed. "The man emerged completely disabled") changed in the last fifty years? warmhearted, with new humility of spirit and a firmer understanding of profound philosophical concepts." No longer belonging FDR, the "Cured Cripple" to his old world in the same way, he came to empathize with the poor and underprivileged, The ability to stand and to walk was unnec- with people to whom fate had dealt a difficult hand.⁴ essary for Franklin Delano Roosevelt-who had contracted polio eleven years before he The extent to which the public was aware was elected to his first of four terms as of Roosevelt's disability varied widely. While 2 CHAPTER ONE for many people with disabilities FDR en- ingness to confront the reality of Roose- gendered faith in their own possibilities, velt's disability: the general public preferred not to see their President's physical impairment. Al- Roosevelt's being crippled was hardly what though some did not know, others refused made him one of our greatest Presidents. Memorials exaggerate in visual terms to learn, and still others refused to tell that the features of those paid this granite the President was disabled. New York Times homage. Wouldn't representing him in a columnist Maureen Dowd describes her fa- wheelchair have the effect of overplaying his ther's experience: being crippled? In the 30's my father, a D.C. police detective, President Roosevelt was seen by all but a traveled to the Deep South to bring back a few as not being disabled. His memorial prisoner for trial. As he waited at the railroad should so depict him, as he was perceived station to come home, some nasty-looking and is remembered. To do otherwise is a form vagrants surrounded him. of revisionism.⁷ "You're from Washington," one said to him. "Do you see the President?" "Lester Hyman, a Memorial Commission "Yes," replied my father, who worked on member, said that they had decided not to protective details for President Roosevelt. "There are some ugly rumors going around display a wheelchair or braces in order to that the President is a cripple," the bum show Roosevelt as people then knew him."8 growled. "We're going to kill any man says Although Maureen Dowd appeals for an that's true." honest depiction of the President as he re- "The President," my father lied pleasantly, ally was, her language and attitude reveal her "is a fine, athletic man" [which unbeknownst limited understanding of disability. Her ref- to Dowd or her father had some element of erence to Roosevelt as "wheelchair bound"- truth since Roosevelt swam frequently].⁵ rather than a "wheelchair user"-is a melo- Of the many who were cognizant of the dramatic construction no longer accepted President's contraction of polio, only a by people with disabilities, for the phrase is privileged few knew the degree to which it an anachronism of a pre-accessible society. limited his mobility. This reference, more than a quibble about The continuing public self-deception re- political correctness,⁹ demonstrates how garding Roosevelt's disability is dramati- the language perpetuates common miscon- cally illustrated by the decision to create a ceptions about people with disabilities. Washington, D.C., memorial depicting FDR Although Dowd concludes that Roose- as though he were not a wheelchair user. velt's concealment of his disability stemmed Karl E. Meyer in the New York Times "Edi- from his courage, more likely his political torial Notebook" indicated that "there will savvy told him that as President of a na- be no visual reminder of this fact [Roo- tion in the throes of a disabling economic sevelt's inability to stand unassisted] in the depression and devastating world conflict, FDR memorial due to be dedicated next he needed to be perceived as a forceful and spring [1997]. On the contrary, he is to be vigorous leader. At that time, power and shown standing tall in one of the three disability were felt in a visceral way to be mu- sculptures planned for the seven-acre site tually exclusive. More indicative of Dowd's on the banks of the Potomac." Although as well as the popular misconception is her Meyer's article was critical of this alteration assumption that what people with disabili- of the truth about FDR, two letters to the ties need are the following: first, to gain in- editor expose the persistent public unwill- spiration, from a "supercrip" like Roosevelt, "WHEELCHAIR BOUND" AND "THE POSTER CHILD" 3 to overcome their impairments; and second, and the amputees. As Roosevelt aide Sam like Tiny Tim, to serve as an inspiration to Rosenman remembered: nondisabled people. At one of the hospitals [Oahu, Hawaii], Worthwhile as these symbolic roles may the President did something which affected be, they are not the major needs of peo- us all [Roosevelt's entourage] very deeply. He ple with disabilities, as John Gliedman and asked a secret service man to wheel him slowly William Roth discovered in their study, The through all the wards that were occupied by Unexpected Minority. 10 Their research on chil- veterans who had lost one or more arms and dren with disabilities led the authors to an legs. He insisted on going past each individual unanticipated conclusion: this population's bed. He wanted to display himself and his useless legs to those boys who would have to most urgent need was a political movement to face the same bitterness remove social impediments. Not burdened With a cheering smile to each of them by stigma, discrimination, or inaccessibil- and a pleasant word at the bedside of a score ity, many people with disabilities, like most or more, this man who had risen from a bed of other people, would be resourceful enough helplessness ultimately to become President to recognize and fulfill their own poten- of the United States was living proof of what tial. Perhaps the one overriding purpose for the human spirit could do.¹³ portraying Roosevelt as he really was is to At Warm Springs, Georgia, a rehabilita- reassert the historical truth with which the tion center established by Roosevelt before nation has never fully come to terms: for his Presidency, he also revealed what his wife many years, from 1932 to 1945, what was called "an understanding of the suffering arguably the most demanding job in the of others." There new "polios" had the world was accomplished from a wheelchair. opportunity to see old "polios" living pro- There were two public occasions when ductive lives in a noninstitutional setting, FDR deliberately permitted people to see alive with intellectual stimulation, spon- the severity of his disability.¹¹ These inci- taneity, and fun. 15 As FDR biographer Hugh dents suggest his awareness of the relation- Gregory Gallagher puts it, "There was flirt- ship between coping with bias (because of ing, falling in love, sexual hanky-panky- disability or race) and transcending obsta- and much gossip about it all."¹⁶ Demon- cles (physical and attitudinal). In 1936, at the strating an insight into the deepest needs request of Mordecai Johnson, president of of other "polios," many of whom were ado- Howard University, Roosevelt allowed the lescents or young adults, FDR was known audience to observe his physical vulnera- affectionately as "Dr. Roosevelt" at Warm bility at the dedication of a new building Springs. 17 Under his direction, the establish- on campus: "He let himself be lifted from ment attended not only to paralyzed limbs, the car and set down in full public view, with newly devised treatments, but also to and then he proceeded to walk slowly and injured self-images. painfully to the podium."¹ Appreciating Roosevelt chose Fred Botts-an early pa- the crippling effects of prejudice, especially tient at Warm Springs who had a serious in this period when racial barriers were sanc- disability-as registrar in charge of admis- tioned by law, Roosevelt was willing to ap- sions and, informally, as representative of pear before the student body as a model of patients' interests. 18 Sharing FDR's vision of achievement in the face of great odds. the operation, Botts served as the "guardian Six years later, he presented himself in of the spirit" of Warm Springs. The removal his wheelchair at a hospital as a means of of Botts from his post after Roosevelt's asserting his identification with the injured death signaled the loss of patient primacy at 4 CHAPTER ONE Warm Springs and its transformation into confirms Longmore's sense of the distorted a more conventional institution controlled social view of disability as a transgression": by professional medical administrators. "Because some patients did recover, and a For the most part, however, as historian few recovered spectacularly, those who did Paul Longmore indicates, FDR lived accord- not came to be perceived as having somehow ing to a bargain that misrepresented the failed the test of American wholesomeness. nature of disability: If only they had tried a little harder, surely they would have made it from iron lung This Bargain could only be struck in a society to rocking bed, from bed to braces, from that viewed disability as a transgression, braces to crutches, from crutches to the IOO- something the disabled person could, with effort, "manage" and control-"a private, yard dash."21 emotional or physical tragedy best dealt Though FDR and his circle strove to de- with by psychological coping," Longmore ceive a public that invited the deception, the says. This view of disability has been called President fell victim to the same dissem- the "medical model": it sees the disability bling that he was perpetrating: disability itself as the problem, to be dealt with in equals weakness; therefore, he is in fact not private, something between doctor and "really" disabled. The fiction the public was patient. "The Bargain," Longmore points out, "disallows any collective protest against fed that he could walk without a great deal things like prejudice or discrimination." of human or mechanical aid became the internalized hoax that he would walk with- Doris Kearns Goodwin in No Ordinary out assistance. The symbolic value placed Time describes the "unspoken code of on walking, inappropriate as it may have honor" adhered to by White House and been, was given dramatic expression in Dore press photographers as well as newsreel Schary's 1958 play and 1960 film, Sunrise at film makers: Campobello. The heroic ending, signifying FDR's re-entrance into political life after In twelve years, not a single picture was ever printed of the President in his wheelchair. his "victory" over polio, is represented by No newsreel had ever captured him being his walking with crutches to the platform lifted into or out of his car. When he to nominate Al Smith at the 1924 Demo- was shown in public, he appeared either cratic Convention. standing behind a podium, seated in an The image of walking is not merely ordinary chair, or leaning on the arm of a Schary's metaphor. It is a collective sym- colleague. If, as occasionally happened, one bol, as in the "Riddle of the Sphinx" in of the members of the press corps sought to violate the code by sneaking a picture of Sophocles' Oedipus: "What walks on four the President looking helpless, one of the legs in the morning, two in the afternoon, older photographers would "accidentally" and three at night?" The answer-man- block the shot or gently knock the camera refers to the human condition, for a person to the ground. But such incidents were rare; crawling in infancy on all fours or hobbling by and large, the "veil of silence" about the in old age with a cane, as if with three extent of Roosevelt's handicap was accepted legs, represents dependency; but a man at by everyone-Roosevelt, the press, and the the height of his powers walks on his own American people.2 two legs. A problem arises, however, when In the Shadow of Polio, a description by metaphor is confused with reality. With TV Kathryn Black of her mother's struggle with reporting making a Roosevelt-like "splen- polio, "an embarrassing rebuke to all the did deception" impossible today, disability heroic 'can-do' propaganda of the period," stigma-despite the passage of the Ameri- "WHEELCHAIR BOUND" AND "THE POSTER CHILD" 5 cans with Disabilities Act-is still so perva- was "politicized and radicalized" when she sive that it is improbable that anyone with was informed that she would have to pass an impairment as severe as FDR's could be a physical examination in order to obtain elected President.² a secretarial job for which she was "per- fectly qualified." Haskell recognized that the physical ex- League of the Physically Handicapped amination would unjustly doom her em- ployment chances even though her disabil- While FDR, the press, and the public were ity would not interfere with her perfor- denying the President's disability, the mance. In fact, her disability was not even League of the Physically Handicapped, at discovered until she was in fifth grade, and the same time, was making disability dis- then only accidentally. Other highly capable crimination visible. One of the first dis- individuals with diverse physical disabili- ability organizations to articulate its pur- ties had similar experiences; frequently, they pose in unequivocally political terms, the were rejected for less qualified nondisabled league was a militant group formed in the workers. On those unusual occasions when 1930s to oppose discrimination in govern- they were hired, they were often paid wages ment and private employment.23 The 1935 well below the regular salary for their occu- Social Security Act, while providing income pation regardless of their competence. support and vocational rehabilitation for Despite the selection by Home Relief people with disabilities, did not completely Agencies of a number of recipients for serve the needs of those capable potential government jobs, records of people with employees who were able to compete in disabilities were stamped "PH" (physically the workforce if given the opportunity. The handicapped), disqualifying those candi- original nucleus of the league, six individu- dates from consideration. The Wednesday, als who formed a sit-in protest at the New May 29, 1935, occupation of the ERB di- York City office of the Emergency Relief rector's office was an impromptu reaction, Bureau (ERB) director, Oswald W. Knauth, resulting from the six protesters' frustration from May 29 to June 6, 1935, were convinced at being unable to confront Knauth directly that their physical disabilities were being to demand employment opportunities. The used as an excuse to treat them as if they press was unaware of the protest until the were unemployable. Thus, they perceived following afternoon when the wife of one themselves as a minority unprotected by the of the demonstrators brought a huge crowd law rather than "medical models" victim- of supporters, later joined by even more on- ized by physical impairments. lookers, to the building. Emboldened, the Although most of its members were mo- occupiers not only insisted on an audience bility-impaired, the league demonstrated with the director, but also added new de- the value of coalition of individuals with mands: fifty jobs would have to be offered different disabilities. Among its members to league members immediately, and ten were people with a variety of disabilities re- more jobs made available each week; salaries sulting from childhood poliomyelitis (also would have to be no less than twenty-seven known as infantile paralysis), cerebral palsy, dollars for married employees and twenty- heart conditions, and tuberculosis, as well one dollars for single employees; workers as from accidents. Florence Haskell, who with disabilities would have to be integrated contracted polio in 1916, the year of the first with, rather than segregated from, nondis- major polio epidemic in the United States, abled workers. 6 CHAPTER ONE Although the exact date of the league's in his administration; second, it served as formation is unknown, Haskell remembers respite for the weary travelers. it as occurring shortly after this nine-day When they met with Harry L. Hopkins, protest and the ensuing trial. Up to that head of the WPA, on the following day, point, most of the activities of those who they insisted on a permanent jobs program would later become league members were ad for-as well as a national census of-people hoc responses to events. The most dramatic with physical disabilities. A census was re- of these events was a ten-day near-comic quired to verify the league's contention that trial of eleven ERB picketers-some sit-in there were many qualified potential work- protesters joined by other demonstrators- ers with physical disabilities. The protesters arrested on June 6, 1935. Besides asking demanded that the census be paid for by Mayor Fiorello La Guardia to preside over the WPA, but supervised by the league, for the trial, the unorthodox and erratic judge, they wanted to be certain that the project Overton Harris, compared himself to was carried out properly. The Washington Star Christ, expressed his desire to escape to described the league members as seeking Tahiti, and urged the defendants to be prac- "not sympathy-but a concrete plan to end tical and forget their constitutional and discrimination against employment of the human rights. Newspaper accounts, such physically handicapped on WPA projects": as "Crippled Pickets 'Torture' Harris," in- The 21-year-old girl president [Sylvia Flexer, dicated that the press noted the farcical later Sylvia Flexer Bassoff] of the youthful quality of the trial.2⁴ The publicity the mem- League of the Physically Handicapped-lame bers received from this trial, as well as from infantile paralysis since she was fourteen political actions such as demonstrations, months old-is tired of stock phrases which picket lines, sit-ins, and hunger strikes, lead nowhere, she declared today. inspired them to organize formally. They She and her companions, who laid 24-hour raised enough money to rent office space, siege to a WPA headquarters Saturday in a successful attempt to arrange an interview where they elected officers and regularly with Administrator Harry L. Hopkins, are discussed tactics. sick of the humiliation of poor jobs at best- Despite their success in eliminating the often no work at all. "We are looking to the "PH" category and acquiring Works Pro- Federal Government because we know the gress Administration (WPA) jobs for them- States would turn us over to local agencies selves and others in New York City, league and we'd be right back where we started," she declared.25 members recognized that their task was in- complete. Job discrimination because of dis- In August 1936, the league sent Roosevelt ability was still accepted nationwide. On the and Hopkins a "Thesis on Conditions of first of their two trips to Washington, D.C., Physically Handicapped," a ten-page docu- on May 8, 1936, thirty-five members traveled ment making the case for government inter- in a flatbed truck for over thirteen hours in vention in employing people with physical order to appeal to FDR, the disabled Presi- disabilities. dent, to provide access to government em- At this point, the attention of the League ployment for people with physical disabil- of the Physically Handicapped returned to ities throughout the country. The league's obtaining WPA jobs for people with physical occupation of the offices of the WPA served disabilities in New York City. The League for two purposes: first, it dramatized members' the Advancement of the Deaf joined in this determination to meet with, if not President effort. Whatever concessions the League of Roosevelt, then at least with a major figure the Physically Handicapped received were "WHEELCHAIR BOUND" AND "THE POSTER CHILD" 7 more than negated by numerous layoffs, vealed contradictory assumptions. Mem- which spurred the league again to go to bers were described both as Communists Washington in August 1937 in order to and Communist dupes, unable to organize urge Hopkins to secure jobs for workers their own protests without guidance from with physical disabilities. Limited by meager outside agitators. New York City WPA di- funds, league members slept the first night rector Victor Ridder first acknowledged the on the WPA lawn and the second on the validity of the league's contention that gov- grounds of the Washington Monument. ernment owed jobs to people with physical Meeting with no success, they once again disabilities because of the employment bar- sought government job opportunities in riers they encountered. Shortly after, how- New York City for workers with disabilities. ever, he labeled league activists "trouble- Ultimately, many of the league leaders were makers who were mentally as well as physi- employed by civil service. cally disabled." Although disabled veterans Because of the personal success of many were given priority in employment, civilians of the members, as well as the dissension with similar disabilities were considered un- triggered by the red-baiting of a small mi- employable. ERB director Knauth claimed nority, the League of the Physically Handi- that New York City had no obligation to give capped gradually ceased to exist. During its unemployable people work, so they should approximately four years of activism, from seek jobs in private industry. 1935 to about 1938, its achievements were On their first trip to Washington, when noteworthy. Imbibing the 1930s spirit of Hopkins denied the league's claim that the social agitation, refusing to remain invisi- WPA was discriminating against workers ble, league members broke the stereotype with disabilities, he advised members to regarding disability. Rather than evoking provide proof of their assertion. Despite the pity, they were impelled by their anger to league's submission of the "Thesis," which risk social disapproval. Armed with a sense included an analysis-with some statistical of solidarity with other unemployed work- evidence-of the disability employment sit- ers with disabilities, they struggled against uation in New York City, as well as a rec- discrimination that unjustly limited their ommendation for a national census, the job opportunities. Considering the num- document was ignored. The most blatant ber of manual labor jobs at that time and contradiction, however, was that FDR, the the lack of access for workers with dis- leader of the government that was designat- abilities to private-sector jobs, league mem- ing these workers with disabilities as unem- bers believed that government had an obli- ployable, was himself disabled. gation to employ people with disabilities. The actions and accomplishments of mem- bers changed their self-perception, for, as The March of Dimes Haskell says, "People faced the public for the first time, not with self-consciousness, but Employing the slogan "Dance-that others with honor. We were able to work, marry, may walk," Birthday Balls, held from 1934 and have children. We could do what others through 1945, celebrated the birthday of do in our society." Because their legacy was the President who was more severely dis- not known, later generations of disability abled than many of the workers denied jobs activists would have to reinvent their vision. because of their disabilities. Attended by Public and governmental reaction to the over three million Americans, by 1937 there League of the Physically Handicapped re- were seven thousand Birthday Balls funding 8 CHAPTER ONE Warm Springs and programs in commu- of Time," the March of Dimes campaign was nities where the money was raised.²² Even comedian Eddie Cantor's master stroke.³ on January 30, 1945, while the President Using his coast-to-coast radio show, Cantor was on an arduous ocean voyage to meet asked listeners to send their dimes directly Churchill and Stalin at Yalta, Mrs. Roosevelt to the White House. Two days after the ap- was attending the rounds of yearly Birthday peal, the results seemed disastrous. A White Balls to support the March of Dimes.²⁸ In House aide complained to the March of order to remove politics from the efforts to Dimes committee, "You fellows have ruined deal with the polio epidemics, and because the President; all we've got is $1,700.50. The the Birthday Balls were not raising enough reporters are asking us how much we've money, the National Foundation for Infan- got. We're telling them we haven't had time tile Paralysis and its fund-raising arm, the to count it." Over the next days, however, March of Dimes, were both initiated in 1937. more than two hundred thousand letters Despite the overwhelming support for the arrived and the message from the White March of Dimes, the National Foundation House changed dramatically: "The White for Infantile Paralysis drew criticism for be- House was buried under an avalanche of ing radical because it provided whatever the mail. The White House mail chief reported, polio patient required, from medical care to "The government of the United States darn equipment, without means-testing. "Con- near stopped functioning." This initiative, servative medical opinion found this policy providing the financial base of the Na- to be a dangerous precedent-perhaps even tional Foundation for Infantile Paralysis, communistic in concept." launched what eventually proved to be the Nonetheless, several factors contributed successful effort to discover a polio vac- to the success of the foundation in its cine.31 The work of Dr. Jonas Salk, who eighteen-year struggle against polio, from produced the killed virus injected vaccine, the organization's inception in 1937 to the and of Dr. Albert Sabin, who developed the development of the Salk vaccine in 1955. live virus oral vaccine, was entirely funded Profoundly dedicated to providing care for by the March of Dimes.³ those affected by polio, Roosevelt also was determined to eradicate the disease. Basil O'Connor, the President's former law part- Parent-Initiated Childhood Disability ner who "used the prestige of the presidency Organizations to fight a germ, was selected as direc- tor of the foundation. Capable and reso- In 1958, with polio having virtually disap- lute, O'Connor was willing to take whatever peared in the United States, the March of risks necessary to serve the purposes of the Dimes took on a new challenge: confronting foundation. When O'Connor realized that the complex array of childhood disabilities success seemed imminent, he allowed the known as birth defects.³³ Although the 1937- foundation to go into debt to finance the 1958 March of Dimes predated the other final research required to develop the Salk organizations that served children with spe- vaccine. His "passionate" devotion to his cific disabilities, it was an anomaly, for it task became almost "obsessive" when his was not parent-initiated.34 Furthermore, the daughter, a mother of five, told him after development of the polio vaccine, the ex- she contracted the illness, "I've gotten some traordinary achievement of this March of of your polio." Dimes-a concerted effort of government, A wordplay on the newsreel "The March volunteers, and scientists to find a means "WHEELCHAIR BOUND" AND "THE POSTER CHILD" 9 of preventing polio-has not served as a tisements in the New York Post in an effort paradigm for coping with other childhood to find parents who shared her concerns. conditions that still exist. Unlike polio, In 1951, Ida Rappaport, formerly of AHRC, which is caused by three specific viruses, formed her own organization, Association many of the other childhood disabilities- of Children with Retarded Mental Devel- such as muscular dystrophy, spina bifida, opment (ACRMD) because of a policy dis- Down syndrome, and cerebral palsy-are agreement with Ann Greenberg. Perhaps be- congenital ailments that occur for a great cause of her own son's condition, Greenberg variety of reasons. wanted to devote the energies of her organi- Like many other groups of its kind, zation primarily to those with profound de- United Cerebral Palsy (UCP) was begun velopmental disabilities, while Rappaport by parents of children with cerebral palsy chose to focus on those, like her child, with who advertised in a local newspaper, seek- moderate developmental disabilities. ing other parents in similar situations.³⁵ During the 1950s, parents and a few oth- UCP's original purpose was to make physi- ers, in particular Gunnar Dybwad of ARC, cians aware of the inadequacy of services the Association of Retarded Citizens (now for children with disabilities. The first UCP, known as The Arc), organized in 1950 by originating in New York City as a result a group of parents and friends of people of an advertisement placed in the New with delayed development, "began to liber- York Herald Tribune in March 1946, was a ate people confined in custodial institu- model for the many UCPs formed in nu- tions."³⁶ These activists learned more than merous cities throughout the country. By anyone had known before about the abilities 1949, all the UCPs had joined together into and potential of people with developmen- one national entity, the United Cerebral tal disabilities when they are treated as full Palsy Association. human beings. Although ARC was initiated Today, local UCPs provide direct services mainly by parents, the acronym acquired to children and adults with cerebral palsy new meanings as people with developmen- and their families, including evaluation and tal disabilities became increasingly involved treatment, parent counseling and family with the organization. For example, the for- support programs, residences and camps, mer Tulsa ARC is now known as Tulsa Ad- day treatment and workshops, and career vocates for the Rights of Citizens with De- development and advocacy. National UCP velopmental Disabilities. deals with advocacy on the federal, state, The National Easter Seal Society was and local levels, promoting legislation and formed in 1922 in Elyria, Ohio, by Edgar F. programs that benefit people with cerebral Allen after his teenage son and fifteen others palsy and other disabilities. The UCP Re- were killed in a streetcar accident.³ Realiz- search and Educational Foundation con- ing that all of the sixteen who died might ducts research on the causes and prevention have been saved if a hospital had been lo- of cerebral palsy as well as on improving cated near the accident, Allen first founded the motor functions of people with cere- a hospital and later spearheaded a drive to bral palsy. create a medical facility for children with Another example of a parent group, the disabilities. Allen was strongly influenced New York Association for Help of Retarded by his own survey indicating that many Children (AHRC), was founded in 1949 children with mobility impairments were by Ann Greenberg, the mother of a child hidden away by their parents, who feared with Down syndrome, who placed adver- detection could result in their children's IO CHAPTER ONE institutionalization. Yet, these children ur- tended to focus on a specific disability, such gently needed medical and educational ser- as the 1937-1958 March of Dimes for polio, vices. Joining with Rotary Clubs and other the United Cerebral Palsy Association, and volunteers, Allen organized the National the Muscular Dystrophy Association. These Society for Crippled Children, later known organizations concentrated on the cause of as the National Easter Seal Society, which the disability, not its effect. One significant became the prototype for state programs es- factor influencing this fragmentation was tablished after the 1935 Social Security Act. that each of these organizations focused on Although originally serving as a national the search for a cure for, or prevention of, clearinghouse for disability information, by the particular disability. The success of the 1929 the National Easter Seal Society de- Salk and later Sabin vaccines in preventing veloped a separate international organiza- the acute infectious disease of polio seemed tion. Renamed Rehabilitation International to justify this approach. in 1972, this arm of the society provides Emphasizing children proved to be an for dissemination of information and ex- effective way of raising funds. The poster change of ideas in many parts of the world. child was probably inspired by the "exploita- Modeling its funding campaign after the tion of touching photographs of crippled Christmas Seal effort to combat first tu- children," used as early as 1933 in fund- berculosis, and then respiratory illnesses, raising efforts for Warm Springs, predating the National Easter Seal Society, reflect- the cleverly-devised and attention-grabbing ing middle-American values, has remained March of Dimes campaign (as the fund- more compatible with small-town church ing arm of the polio foundation). 40 This groups than with cosmopolitan urban cen- concept was imitated by other childhood ters. 38 While maintaining a presence in each disability groups, as the child selected for state in the union, the National Easter the year to represent the organization of a Seal Society has continued projects from particular disability was always physically speech therapy to elimination of physi- appealing, a symbol of vulnerability evok- cal barriers for people with motor impair- ing sympathy. One unstated, though er- ments. 39 Extending his mission to include roneous, message communicated by these adults, Allen demonstrated his farsighted- posters was that disability was somehow ness in the 1920S and 1930s by present- limited to children. ing economic arguments for education and Whatever public misconceptions arose employment-rather than charity-for peo- out of the fund-raising strategies employed ple with disabilities so as to allow them to by these organizations, the techniques used achieve equality and independence. Because in later years by the telethons were far more of its origins, the society has been asso- blatant and undignified. Real children with ciated with rehabilitation, housing, trans- disabilities were paraded across the stage as portation, and accessibility for people with objects of pity, while the amount of money a variety of disabilities, especially mobil- raised was flashed on the television screen. ity impairments. The implication that somehow this money would be used to cure these particular chil- dren, and children like them, was mislead- The Poster Child and the Telethon ing. For example, a I993 article reported that much of the money collected as a result of Except for Easter Seal, organizations that the Jerry Lewis Muscular Dystrophy Asso- served people with mobility impairments ciation Telethon has always gone toward "WHEELCHAIR BOUND" AND "THE POSTER CHILD" II the cost of the telethon itself.41 Another use our Thirteen Colonies unless they could of this money is not widely known: "Much demonstrate ability to support themselves of Jerry's money goes into investigating ge- independently. Immigration policy netic screening to prevent people with MDA effectively forbade entrance into the country [sic] from even coming into the world. Jerry's of persons with physical, mental, or emotional disabilities. Because popular perceptions kids are people in wheelchairs on television equated disability with inability [within the raising money to find a way to prevent their colonies and later the states], existence of a ever having been born."⁴² disability appeared reason enough to deny The public images put forth by the poster a person the right to participate in societal children and the telethons negated the re- life. Within families, persons with disabilities ality of adults with disabilities. It is al- were hidden, disowned, or even allowed to most amusing to record both the Pollyan- die through the withholding of life-support services. Within disabled individuals, self- naish and macabre assumptions of dis- perception inevitably reflected prevailing abled youngsters who had little awareness social attitudes, keeping people from even of the existence of adults with disabilities. attempting to become self-reliant.44 Some thought that all children with disabil- ities were cured as adults; others thought With an expanding U.S. population, pres- that they all died before reaching adult- sure mounted first for institutionalization, hood. Later, adults with disabilities took and later rehabilitation, of people with dis- on the task of questioning their absence abilities. In the early decades of the twenti- from all these public relations strategies. eth century, however, the work of writer and How could children with disabilities ma- social critic Randolph Bourne-who had "a ture into productive adults if they had no highly visible [physical] disability" that "in- models? How could adults with disabili- volved little functional impairment"-was ties participate in society if they were in- described by the renowned poet, Amy Low- visible? Was the money acquired by means ell, with this caustic remark: "His writing of telethons worth the damaging miscon- shows he is a cripple. Deformed body, de- ceptions? In response to these questions, formed mind."⁴⁵ When Bourne related his these adults determined that the princi- experience as a person with a disability, pal need of children with disabilities is not especially in his "often quoted and so lit- the services to which telethons contribute, tle understood" essay entitled "The Handi- but rather a civil rights movement dimin- capped," he placed "his psychological strug- ishing "society's role in handicapping dis- gle to achieve 'self-respect' within the abled people."43 context of a society that [devalued] him be- cause of his disability. From the stigmatized social condition that had isolated him as an Changing Views of Disability in the adolescent and had kept him unemployed United States as an adult, he knew of 'no particular way of escape." Such a widespread movement was incon- Longmore notes why Bourne's story is ceivable until the 1960s, considering the so significant: "When devaluation and dis- legacy of segregation of people with dis- crimination happen to one person, it is abilities that dates back to the Thirteen biography, but when, in all probability, Colonies: similar experiences happen to millions, it Disabled individuals were prohibited from is social history." Like Longmore, sociol- settling in the towns and villages of ogist Irving Zola points out the neces- I2 CHAPTER ONE sity for a recorded history of people with proposed by eugenicists and professionals disabilities: who dealt with people with disabilities: In 1912, the eugenic section of the American The reason that people with disabilities are Breeders' Association, later renamed the often thought to have had no history is really American Genetics Association, drafted a that they've had no recorded history. Only model sterilization law to be applied to these recently have there been any histories of disability. It's been partly because society has "socially unfit" classes. By the beginning of World War I, sixteen states had adopted denied that there was anything important to sterilization statutes. A few eugenicists even be learned. It was partly because, as with any advocated the mercy killing of individuals minority group, the people were so of the with epilepsy or mental handicaps, especially Other that they were never given any of the those who were mildly mentally retarded. tools to record any aspects of their history: "history" would be, supposedly, only one of The eventual recognition that people successes, of the heroes of the society, not with disabilities are not only capable of par- those who had difficulty, in some ways, fitting in. So, people with disabilities have followed ticipating in the workforce, but also entitled the paths of people with color, and women, to benefits, was expressed by changes in of trying to reclaim what has long been lost. laws, such as the 1918 rehabilitation legis- lation: The early twentieth century, the period in From the beginning [of the nation], which Bourne lived, was "an era when prej- institutions for mentally and emotionally udice and discrimination against disabled impaired persons were custodial rather people seemed to have been intensifying than educational. Persons with sensory and sharply": physical disabilities were more likely to be taught at least fundamental academic If in New York City he [Bourne] was material, but instruction was less to prepare rejected as a luncheon guest because of these individuals for vocations than to satisfy his "unsightliness," in Chicago he might have religious and societal expectations and to been arrested for showing up at all. A [1911] resolve ethical concerns. It was not until city ordinance [repealed in 1974] warned: "No large numbers of veterans returned from the person who is diseased, maimed, mutilated, or First World War, however, that any Federal in any way deformed so as to be an unsightly initiative [training and employing veterans or disgusting object or improper person to with disabilities] emerged.47 be allowed in or on the public ways or other public places in this city, shall therein or The 1935 Social Security Act establishing thereon expose himself to public view." "old age and survivors benefits, unemploy- ment compensation, and programs for dis- Bourne's opportunity to get an educa- abled youth and adults" reflected the real- tion was unusual, for most children with ization "that assistance to disabled individ- disabilities were treated more like the boy uals was as much a matter of social justice with cerebral palsy who, in 1919, was expelled as charity."48 from public school in Wisconsin, despite During World War II defense plants des- his ability to keep up with the class aca- perately needed workers, so "government demically, because "the teachers and other propaganda urged employers to get past children found him 'depressing and nause- their prejudices" against people with dis- ating." In fact, "segregation and steriliza- abilities as is evident in this war film tion of deaf people, blind people, people monologue: with developmental disabilities, even peo- Sure enough, blind. But they can do it as well ple like Bourne who had tuberculosis" was as anybody, and they volunteered, releasing "WHEELCHAIR BOUND" AND "THE POSTER CHILD" 13 workers with eyes for other duties. All dividuals with specific impairments. Most through the factory now you may glimpse of the service-provider disability organiza- things like this, an unobtrusive limp that tions for people with motor impairments, means only one good leg. Or like this, of however, did not recognize the common course you really don't need more than one arm for this job. Maybe a man requirements of their clients-a barrier- might be a better worker without his free environment and wheelchair-accessible hearing with all this noise. But the point transportation. By the 1970s, people from is, whereas, industry started out to make it different disability groups began to real- possible for these physically handicapped ize that working together would be more people to help themselves, now it ends up beneficial for everyone than working sep- that these handicapped people are helping arately or competitively. Consequently, a their country.49 new concept emerged: the idea of disability Of course, like Rosie the Riveter employees as a social and political force. What per- with disabilities lost their jobs after the war haps was revolutionary was what underlay to make room for the returning soldiers. this new awareness. The predominant is- She was sent back to the kitchen while sues for blind people-literacy-and for deaf people with disabilities were once again people-language-had primarily involved considered unemployable. changes in people with disabilities. However, Furthermore, because government still the creation of universally accessible sur- failed to provide many of the supports roundings necessitated a redesigning of so- required by people with disabilities, pri- ciety for everyone. vate agencies developed, each serving in- Chapter Two Seeing by Touch, Hearing by Sign SINCE BLIND PEOPLE HAD access to spo- Whether deafness is "preferable" to blindness, ken language, they needed a tactile alpha- if acquired in later life, is arguable; but to bet, such as Louis Braille's 1829 elegant be born deaf is infinitely more serious than raised dot method for reading and writ- to be born blind-at least potentially so. For the prelingually deaf, unable to hear ing. Following the logic of English gram- their parents, risk being severely retarded, if mar and word order, the Braille system not permanently defective, in their grasp of served to integrate blind people into the language unless early and effective measures larger society. On the other hand, deaf are taken. And to be defective in language, for people required a visual syntax, necessitat- a human being, is one of the most desperate ing a form of communication that tended of calamities, for it is only through language to separate them from the hearing world. that we enter fully into our human estate and Integration for deaf people has required culture, communicate freely with our fellows, acquire and share information. If we cannot them to concentrate on speaking and lip- do this, we will be bizarrely disabled and cut reading, which too often have been Her- off-whatever our desires, or endeavors, or culean tasks requiring effort that they could native capacities. And indeed, we may be so have more productively spent on acquiring little able to realize our intellectual capacities sign language-the key to their ability to as to appear mentally defective.¹ learn and to communicate. Under Roman law, deaf people were treat- ed as though they were "retarded"; they Blindness and Deafness: A Comparison "were generally outcasts, considered une- ducated and ineducable, and outside the Blind people, like those with other dis- privileges and obligations of the law."2 In abilities, have had to prove their capability; modern times, because of the obstacles to deaf people have had to prove their human- communication between the hearing world ity. In Seeing Voices, Oliver Sacks suggests and the deaf, the phrase "deaf and dumb," that the common assumption that deaf- in which "dumb" originally meant simply ness is less problematic than blindness may the inability to speak, came to mean deaf be mistaken: and stupid.³ In mid-sixteenth century Spain SEEING BY TOUCH, HEARING BY SIGN I5 most deaf people were deprived of their In the event that Mr. Irwin's physical birthright, their legacy.4 In order to circum- blindness is offered as an obstacle to the vent the legal hurdles, a Spanish priest, Pe- proper exercise of the duties of this office, dro Ponce de Leon, devised oralism, a means I submit that such an objection, in light of of teaching deaf nobility the capacity to ap- his manifest ability and success, is wholly unworthy of consideration by those who, like proximate speech well enough to satisfy the ourselves, are constantly teaching, preaching requirements of inheritance law. Ironically, and professing to believe in the capabilities of oralism would become "the grand tragedy blind people. against which modern 'Deaf' culture [not to be confused with 'deafness' as disability] Leadership in organizations for deaf peo- has constructed itself."5 ple dramatically differed from leadership in Oralism is available to only a small per- organizations for blind people, especially centage of those who are profoundly deaf, after the 1880 Congress of Milan.⁸ A vic- most often the postlingually deaf. Gener- tory for the oralists, this congress of edu- ally, people who are hard-of-hearing use cators of deaf people, where deaf teachers speech while those who are profoundly deaf were excluded from voting, banned the use use sign language. Since the ability to speak of sign language in schools. Notables such was traditionally a source of political in- as Alexander Graham Bell, Samuel Gridley fluence in the deaf community, those who Howe, and even the "patron saint of pro- used sign language were disadvantaged. The gressive education," Horace Mann,9 spear- 1988 uprising at Gallaudet University, the headed the oral movement in the United world's only institution of higher education States. The result of their efforts was to for people who are deaf or hard-of-hearing, make deaf and dumb-signifying mental signaled a change. After the protest, deaf deficiency, as well as inability to speak-a advocacy was no longer solely a province self-fulfilling prophecy. Approximately one of the oral deaf. Being a deaf child of hundred years of oral education for deaf deaf parents, relying on American Sign Lan- children resulted in a large alienated, illiter- guage, gained currency in the new radical ate, and powerless deaf population, one that deaf community. had internalized the negative self-image the In contrast, blind people have long held educational system had imposed on them. leadership roles in organizations for the Therefore, it is not surprising that deaf blind, such as the American Foundation for people did not insist on gaining leadership the Blind (AFB) founded in 1921.⁶ Robert roles in organizations that served them un- Benjamin Irwin, the first full-time executive til the 1980s. director of AFB (from 1929 to 1948), was blind from the age of five, supported him- self through college and graduate school, Sign Language and Oralism and strongly advocated integration of blind people in all aspects of life, including edu- Advocates of oralism did not recognize that cation and employment.⁷ Partially sighted in prohibiting deaf children's use of sign at birth and blind by the age of twenty- language, they were depriving these learners three, Henry Latimer, executive secretary of of their inherent biological adaptive mech- the Pennsylvania Association for the Blind, anisms for communication. For the hear- made the following incisive remark in his ing world, the channel of communication speech nominating Irwin for his new role is "mouth-to-ear"; for the deaf, the channel at AFB: is "manual and facial gestures" to eye.¹⁰ A I6 CHAPTER TWO few unusual deaf children may eventually lan sought to impose "spoken" language on learn "spoken" English by a combination deaf children, they were tampering, unwit- of lip-reading and partial hearing capacity. tingly, with the composition of the learners' Most prelingually deaf children lacking ac- brains. Moreover, these educators of deaf cessibility to sign language, however, will children were violating the deaf commu- attain no, or limited, language ability. On nity's particular expression of what modern the other hand, Nora Ellen Groce's Everyone linguists call the "Universal Grammar"- Here Spoke Sign Language: Hereditary Deafness that innate plan natural to all evolving lan- on Martha's Vineyard demonstrated how deaf guages. Supporting the concept of a Uni- people can blend successfully with the rest versal Grammar, researchers have found of the community, even achieve distinction, that very young deaf children from differ- when the sign language for which they have ent cultures use gesture in similar ways as a natural predilection is regarded as any they progress from simple to more complex other language and allowed to flourish. 11 combinations, developing a type of gestu- Because of the high incidence of deafness ral grammar.15 Even if the intention of the on Martha's Vineyard, one in four by the Congress of Milan was to integrate deaf peo- mid-nineteenth century, "the entire com- ple into the greater community, its method munity learned Sign, and there was free and was misguided, for languages, spoken and complete intercourse between the hearing signed, are not deliberate inventions. They and the deaf. Indeed the deaf were scarcely are intricate systems, designs that uncon- seen as 'deaf,' and certainly not seen as at all sciously develop as a process, historically, 'handicapped.'"¹² over generations, to suit the biologically dis- Two factors reveal how the oral educa- tinctive attributes of a group.1 tors were inadvertently creating a functional The oralism that began in the 1880s was form of retardation in individuals whose a regressive movement in deaf education. potential, had they been encouraged to ac- In the 1750s, the abbé de l'Epée realized quire a first language-Sign-will never be that in order to teach religion to the im- known. First, there is a specific and early poverished Parisian deaf, he would have to time frame-"up to the age of six, steadily function as if he were a missionary in a compromised from then until shortly after foreign land, learning the street sign lan- puberty"-for language acquisition on the guage of the deaf.¹⁷ Thomas Gallaudet, an human maturation clock. 13 Once the crit- American, finding no cooperation in Eng- ical period has passed without the proper land in his quest for a procedure for teach- stimulation, language learning is usually ing language to his neighbor's deaf child, impaired forever. Second, inhibiting rather discovered de l'Epée's successful method in than fostering language, as the oralists were Paris. 18 Since Gallaudet neither knew sign heedlessly doing by barring Sign, frequently language nor had experience as an educator, results in the failure of children to develop he persuaded Laurent Clerc, a teacher of cognitive skills completely. deaf students, to accompany him to Amer- If the cognitive scientists who describe ica to establish a school for the deaf in language as a "mental organ" are correct, Hartford, Connecticut, in 1817.¹⁹ Clerc, who then language is not a "cultural artifact" was profoundly deaf, was trained at the Na- but a "biological birthright," an instinct tional Institute for Deaf-Mutes, founded by as organically linked to being human as de l'Epée in Paris.²⁰ The abandonment of web-spinning is to being a spider.¹⁴ Thus, oralism in American deaf education until when the educators at the Congress of Mi- the 1880 Congress of Milan was propitious, SEEING BY TOUCH, HEARING BY SIGN 17 an accidental result of Gallaudet's discour- was a countervailing ethos vigorously sup- agement by the English oralist educators. porting the teaching of sign language. The A natural, uniquely North American sign National Association of the Deaf (NAD), language evolved from the merging of the originally called the National Convention Parisian sign language with American Eng- of Deaf-Mutes, held its first meeting in lish. As an indication of the progress be- Cincinnati at about the same time as the ing made in the education of the deaf, Milan Congress.25 Drafting a constitution President Abraham Lincoln signed legisla- and electing a deaf educator, Robert P. Mc- tion in 1864 authorizing the seven-year-old Gregor, as its first president, this group of Columbia Institution for the Deaf, Dumb, educated and successful deaf people, repre- and Blind to confer college degrees with Dr. senting twenty-one states, formed an asso- Edward M. Gallaudet (the son of Thomas ciation that still plays a significant role in H. Gallaudet, founder of the first school deaf politics. Americans, including a pro- for deaf students in the United States) as fessor at the National Deaf-Mute College president of the institution. 21 Although deaf (later known as Gallaudet College) and the people were attaining success and becoming president of NAD, were delegates at the first integrated in the hearing society in the nine- International Congress of the Deaf, orga- teenth century, oralism gained ascendancy nized in Paris in 1889, one hundred years in the education of deaf children.²² The ef- after de l'Epée's death, in response to the fect was increased segregation of deaf peo- demeaning proscription of sign language.2 ple in socialization and employment, a con- Frequently alienated from the rest of so- sequence of reduced educational achieve- ciety because of a communication barrier, ment by deaf students who had been de- deaf people were inclined to form separate prived of their natural language. clubs where they could socialize with oth- Although the American delegation at Mi- ers like themselves. Despite the directive re- lan voted against the pure oral method, by quiring oralism in the schools, in the clubs 1900 oralism had undermined deaf educa- deaf people used the form of expression tion in America and rendered many deaf that was natural to them, sign language. educators unemployed.23 Although these clubs served an essential Deaf people were well organized in the purpose-encouraging human interaction, mid-nineteenth century, with their own providing required information, and forg- newspapers, clubs, unions, and congresses. ing deaf consciousness-they tended to iso- But as popular misconceptions of Darwinism late generations of deaf people from the and the theories of eugenics spread, social world around them. Although most people theorists argued that by their "clannish" join homogeneous groups, this proclivity behavior the deaf were going to marry only among deaf people has been exacerbated by each other and produce ever larger numbers of deaf children. (In fact most children of the demoralizing effects of oralism. Their deaf parents can hear.) To break up the deaf own language, Sign, and the culture that communities and integrate deaf people into emanates from their language found expres- hearing society, leading educators of the deaf sion only clandestinely in the deaf clubs. demanded that sign language be suppressed Because many deaf people incorporated the and that the deaf learn to speak. The vigorous sense of shame fostered by their oral edu- objections of deaf people were ignored-how cation, their natural language became a se- could they know what was best for them?2⁴ cret burden shared only among themselves. Oralism took about twenty years to take Once a source of private humiliation for a firm root in the United States because there great number of deaf people, sign language I8 CHAPTER TWO only recently is becoming visible in pub- Braille and Talking Books lic places. The great potential of this language, Just as deaf people gravitated to sign lan- fostered by new technology, is evident in the guage before educators recognized its value, growing academic interest in Sign: blind students at the Missouri School for the Blind embraced Braille in I854 before it was accepted by their teachers.² At last, With its usual kinetic visual mode, sign a touch system was available that enabled presents an artistic form that is at once blind people to write as well as read, for ancient in its oral (nonwritten) tradition and postmodern in its exploration of visual other touch systems made only reading pos- media. ASL [American Sign Language] sible. Because of the simplicity of Braille, literature provides a unique postmodern bardic blind people could use their fingers to read tradition. The stories, poetry, and folkloric and a stylus to write. language games of the Deaf have been In 1829, Louis Braille, a young blind passed on for years by "sign of hand" (as in teacher and former student at the Royal "word of mouth"). But, as oral traditions may be recorded and preserved, so ASL Institute for Blind Children in Paris, pub- lished his modification of Charles Barbier's may now be produced and reproduced in mass quantity thanks to the development of technique. 30 Barbier's phonetic scheme con- video technology. While the impact of visual sisted of twelve-unit cells, while Braille's al- technology on ASL literature is analogous to phabetic method consisted of six-unit cells. the impact of the printing press on written An officer in the Napoleonic Army, Barbier literature, it may be too early to discern created his raised-dot secret military code the implications of that technology. At the very least, video has enabled the works of for night writing, employing a hinged frame leading Deaf poets and storytellers to become for holding paper and a pointed implement nationally recognized and analyzed.27 for punching dots. When Barbier demon- strated his invention at the institute where Braille was working, the young educator rec- Many deaf people before the 1980s were ognized not only the value for blind people limited because of misconceptions about of an embossed dot code for reading, but their language and their learning potential. also of a frame and stylus for writing. On Martha's Vineyard or an isolated vil- Braille's legacy to blind people has been lage in the Yucatan or in other locations, both his appreciation of the requirement for when sign language, carrying no stigma, an easy tactile formulation-combining the was treated as different but equal to spoken features necessary for reading and writing- language, deafness was not a drawback.28 and his skill in devising such a method- However, most people do not live in envi- ology.31 Since each Braille six-unit cell has ronments as inclusive as these. At best, even sixty-three potential combinations, it is pos- when deaf people are integrated in a com- sible to have a specific combination for each munity, they operate in a language different of the letters of the alphabet and the in- from the majority. Blind people functioning dividual marks of punctuation, as well as in the same language as the rest of soci- for frequently used words. Braille's design ety did not have the kind of obstacles that is so versatile that the arrangement can be deaf people had to overcome. Yet, until the applied not only to language, but also to any introduction of touch systems for written ordered sequence, such as musical notation, language, blind people had limited access the periodic chemical table, or mathemati- to reading and writing. cal systems. SEEING BY TOUCH, HEARING BY SIGN I9 Despite France's official recognition of records and playback machines, usable by Braille in 1854, it took England until 1905 blind people. Besides convincing Congress and the United States until 1932 to formally to appropriate funds for talking books, the accept a uniform version of Braille as the AFB also contended with the copyright pro- medium for reading and writing for blind tection of writers and speakers by restricting people. Invented in 1890 by Frank Hall, the equipment to blind people. Responding the Braillewriter-a six-keyed Braille type- to Helen Keller's request, FDR issued a 1935 writer in which each letter is a combina- executive order allowing the Works Progress tion of keys similar to a musical chord- Administration to manufacture playback eventually helped promote standardization machines.³⁷ By lowering the cost of the ma- of Braille. Yet, the United States required chines, the President's decree made them a long time to adopt a consistent Braille obtainable by an increasing number of blind code because different schools and differ- people. More suitable than Braille for cer- ent localities employed diverse touch sys- tain publications, talking books expanded tems, as well as variations on Braille's orig- learning possibilities for blind people. Years inal method. In the "war of the dots"- later talking books would become valuable this competition between these incompat- not only to blind people, but also to people ible schemes-blind people were the losers, with a variety of other impairments, such as for they could read only the limited num- certain learning or motor disabilities. ber of books published in the particular code that they knew.³⁴ A nationally ac- cepted Braille system, the natural key to Sheltered Workshops literacy for blind people,³⁵ was comparable to an established sign language, the natural The effort to make deaf people function means to cognition and communication for as if they were not deaf was evident in the deaf people. oralist movement. It was assumed for blind While Braille gives blind people access to people, however, that accommodations had only a limited number of books, Thomas to be made. Considered able to travel in- Edison's 1877 invention of the phonograph dependently and capable of performing augmented the books available to blind peo- menial tasks, deaf people were employed ple by utilizing recorded texts, which by more often than blind people. Separate 1934 under the auspices of the American occupation-oriented facilities that employ Foundation for the Blind evolved into "talk- people with disabilities, known as "shel- ing books. Unlike most technological ad- tered workshops," were created for blind vances, long playing (LP) records were used workers since they were regarded as unem- by blind people before they were used by ployable in the general workforce. the general public, for talking books pre- An outgrowth of the work departments ceded commercial LPs by fourteen years. located in special residential schools for People with voices appropriate for selected blind children, sheltered workshops pre- recordings, many of whom were famous pared graduates, as well as newly-blinded actors, offered their services despite the adults, to earn a living. In 1840, Samuel Gri- small remuneration. dley Howe founded the work department In order to make the potentiality of talk- at the Perkins Institution in Massachusetts, ing books a reality, the American Founda- a facility that became the model for the tion for the Blind (AFB) hired an electri- sheltered workshop.³⁸ Howe's intention was cal engineer to develop inexpensive, durable to foster a sense of self-respect and self- 20 CHAPTER TWO reliance in the blind workers, not to provide communities that would have the wisdom profit for the institution. Yet critics argue to accept them. that the workshops were basically flawed, for they did not encourage integration of their workers into the general workforce, Mobility for Blind People: Guide Dogs and, in slack times, they retained only their and White Canes best employees. Furthermore, some work- shops exploited their workers, too often For blind people, unlike deaf people, mo- paying them far less than minimum wage bility was the key to independence, the op- and offering no fringe benefits. portunity "to forgo the comfort of sheltered lives and move out into the bustling traffic of their sighted peers."41 Blind people seem The Lighthouse to have always used staffs and animals, es- pecially dogs, as guides. Prior to World War Winifred Holt Mather, the founder of the I, however, American leaders in the blind Lighthouse movement, quoted a French community, because of their effort to make commanding officer addressing soldiers blindness unobtrusive, exhibited a lack of blinded in battle during World War I: "The enthusiasm for the guide dog movement.⁴² greatest menace to the blind is the short- After World War I, dogs were used as guides sightedness of the seeing."³⁹ This apho- in Germany, first for soldiers blinded in the rism expressed the prophetic vision that led war, then for blind civilians. The 1926 visit Mather to recognize as early as 1904 the pos- of wealthy Philadelphia socialite Dorothy sibility for and significance of independence Harrison Eustis to a German school where for blind people. Well-traveled and fluent guide dogs were trained inspired her 1927 in four languages, she was instrumental in Saturday Evening Post article that caught establishing Lighthouses offering services the attention of young and recently-blinded to blind people in such places as New York, Morris Frank. Following his trips through- Paris, Bordeaux, Rome, Calcutta, Canton, out the country, where he demonstrated the Osaka, Kyoto, and Cuba.⁴⁰ independence that guide dogs accord blind Her progressive notion of a movement people, Frank joined Eustis in 1929 in es- for blind people, in a context not confined tablishing the first United States guide dog by national limits, anticipated the interna- training school, Seeing Eye. tional movement for people with disabilities By tapping their staffs as they walked, that would not receive prominence until the blind people were able to signal others 1980s. Despite being reprimanded for im- regarding their presence and also gener- modesty and arrogance by representatives ate echoes providing necessary information of the public and the medical profession for about their surroundings.⁴³ The replace- not appreciating her supposed limitations ment of clattering horses' hooves and noisy as a woman and a nonprofessional, she per- iron wheels by high-speed, quiet, rubber- severed in her efforts to prevent blindness, tired automobiles required that blind peo- to provide services and training for blind ple use the clearly visible, red-tipped white people, and to encourage their integration cane. With support from the Lions Club of into the outside world. Decrying the error Peoria, Illinois, in 1930, a city ordinance was of institutionalizing blind people, she real- enacted mandating that motorists yield the ized that their inclusion in the wider society right-of-way to people who presented them- would serve not only them, but also the selves as blind by displaying their white SEEING BY TOUCH, HEARING BY SIGN 2I canes.⁴⁴ After this so-called White Cane Law explained "that we oppose a system of relief was passed in 1931, Lions Clubs through- which insists upon the means test, bud- out the nation worked effectively toward geting, individual need individually deter- the passage of similar laws in other states. mined, and large social worker discretion, Spurred by the accidental death of Thomas which in our experience have been veritable D. Schall, the blind Minnesota senator who instruments of oppression."⁴⁴ was fatally injured by a car in 1935, the AFB TenBroek described NFB as comparable advocated for the white-cane movement and to the American Federation of Labor: "Be- also offered canes at wholesale prices. cause we [NFB] are trying to do for our By the 1960s, mobility instruction-a spe- people what organized labor is trying to cialized discipline for teaching blind people do for its people, because of the similar- how to use the cane as a mobility tool- ity in organizational structure, in purpose had become a formal profession. Although and in work, and because of the laboring the pencil-tipped cane, tapped from side to man's inherent sympathy for the underpriv- side by the blind traveler, has been the tradi- ileged and the'conditions under which they tional mobility device used by blind people, live, organized labor has responded more since the late 1980s a small but growing per- than generously, materially, morally, and centage of this population has been success- with political support." Without the right fully introduced to the constant-contact to organize, however, workers in sheltered rolling-tip cane. 45 The rolling-tip cane is less workshops still have neither the protection likely to get stuck and offers more informa- of minimum wage laws nor unemployment tion about the surface of the ground than compensation. Although many of these the traditional cane. workers could function in a competitive en- vironment, they are trapped in workplaces devoid of opportunity or hope because of Jacobus tenBroek and the National discrimination rather than lack of ability. Federation of the Blind Though most civil service examinations were not open to blind candidates until the The increased mobility and independence early 1960s, NFB, from its inception, op- that blind people experienced with the use posed exclusion of blind people from civil of dogs and canes expanded their edu- service employment. The members of the cational and vocational opportunities, as late 1930s League of the Physically Hand- well as enabled them to organize to pro- icapped fought for their inclusion in the mote their economic well-being. Although civil service workforce at a time when people the 1942 annual convention of the Na- with even minor disabilities were relegated tional Federation of the Blind (NFB) dealt to either dependence on family or work in with employment problems-including ex- segregated shops. However successful they ploitation of blind workers in sheltered were in their ambitious endeavor, their goal workshops-the original focus of the or- was limited and once achieved, the League ganization was Social Security benefits for of the Physically Handicapped disbanded. blind people.4 Founded in November 1940 On the other hand, NFB, perceiving its in Wilkes-Barre, Pennsylvania, by Jacobus struggle in a civil rights context before the tenBroek, NFB, in its first convention, called 1960s civil rights movement, is still a vital for a national pension for blind people, organization working for social change. without means testing, as part of the Social Some of tenBroek's goals anticipated spe- Security Act.⁴⁷ In his 1944 address, tenBroek cific objectives articulated by disability ac- 22 CHAPTER TWO tivists three decades later. He exhorted his cize the special powers supposedly engen- audience to strive for legislation amending dered by blindness. Recognizing the effort the Civil Service Act of the United States so necessary to deal with the loss of a vital that discrimination on account of blindness sense, he focused on the determination and would be prohibited. He called blind peo- tenacity required to compensate. In an at- ple's "demand for equality" one of the "fun- tempt to demystify blindness, he described damental principles underlying our [NFB's] it as "nothing more or less than the loss of program and guiding our activities be- one of the five senses and a corresponding cause it is not based upon any notion that greater reliance upon the four that remain- all men are physically or mentally equal, as well as upon the brain, the heart, and but that they have an equal right to insist the spirit."⁵ Echoing a phrase used by ten- upon opportunities for which they are prop- Broek, Kenneth Jernigan, who succeeded erly qualified." the first NFB president in the late 1960s,⁵² Differentiating NFB from the agencies argued in a speech entitled "Blindness- purporting to serve the blind, tenBroek Handicap or Characteristic" that "blind- announced that "the National Federation ness is only a characteristic nothing more of the Blind is not an organization speak- or less than that."53 Although appearing to ing for the blind; it is the blind speak- be an affirmation of tenBroek's position, ing for themselves." Although the 1957 Jernigan's assertion represented a concep- Kennedy-Baring Bill, ensuring blind work- tual leap. Rami Rabby, an NFB officer, in- ers the right to organize and bargain col- dicated that Jernigan meant that blind- lectively in the workshops without intim- ness would be only a characteristic and idation, was unsuccessful, the publicity not a disability if blind people were prop- surrounding the failed legislation brought erly trained and social attitudes were ap- NFB national recognition.49 The January propriately modified.54 Yet the New York II, 1958, issue of The New Yorker presented City subway gate issue of the 1970s and a favorable profile of President tenBroek 1980s revealed the implications of Jerni- as a representative of the movement he gan's approach. was leading: Most of the country's three hundred and twenty-five thousand blind people who NYC Subway Gates: A Controversy in work are employed in the special sheltered the Blind Community shops that society-with the best and most charitable intentions-has set up for us, where When the New York City chapter of the we can make baskets and such, and come to American Council of the Blind (ACB) sued no harm. Only about two or three percent of the Metropolitan Transportation Authority us are holding normal jobs out in the world. My organization is convinced [that] at least (MTA) in 1983 for the 1970 purchase of sub- twenty times that many could be doing so way cars, the R-44 and R-46, which lacked if they had the chance. What we seek for gates protecting people from falling onto the blind is the right to compete on equal the tracks, NFB objected. When blind riders terms. Actually, I can't say what the limits use the subway, they tap their canes along are. Every time I think I have hit on some job the side of the train until they reach the that a blind man couldn't conceivably hold, I entrance door. Without these gates, blind find a blind man holding it.50 passengers easily can mistake the space be- TenBroek did not minimize the problems tween the cars for the subway door and, as inherent in blindness, however, or romanti- a result, fall onto the tracks. NFB's ratio- SEEING BY TOUCH, HEARING BY SIGN 23 nale for taking issue with ACB's legal action killed by a moving train after he fell onto was based on the assumption that since the subway tracks. Dorothy Matano, pres- blindness is only a characteristic, a properly ident of ACB, noted that "Bert was an trained blind person had no need for special experienced and able traveler who used accommodation. ACB and NFB have not the subway for many years. These death hesitated to take contrary positions pub- traps for the blind cover twenty percent licly; in fact, ACB was born in 1961 out of of the subway system."⁵⁵ On January 26, an internal conflict in NFB. 1983, a second demonstration was called Though several blind people who were by ACB in front of the MTA office in seasoned travelers were killed or maimed order to focus public attention on the because there were no gates between the MTA's criminal negligence. Groups repre- subway cars, NFB firmly maintained its po- senting people with a variety of disabili- sition. In 1970 a blind woman fell from ties endorsed the demonstration, and over the subway platform into the space be- two hundred individuals participated in tween the ends of the cars and onto the the protest. tracks. When the train moved on, she lost Reluctant to take legal action until this both her legs and an arm. Another tragedy last accident, Concerned Citizens for Sub- concerned a blind newsdealer who had way Safety finally became persuaded that been a subway user for thirteen years. In only the threat of a lawsuit by ACB would 1974, he walked from the subway platform compel the bureaucratic MTA to take the into what he thought was the door open- steps necessary to make the R-44 and R- ing of the subway car. Amidst scream- 46 subway cars safe for blind passengers. ing fellow passengers, he fell between two While the private law firm-LeBoeuf, Lamb, subway cars onto the tracks. The engi- Greene & MacRae-representing ACB pro neer, unaware, moved on, killing the man. bono was negotiating with the MTA in or- ACB sought an effective response to these der to acquire the protective gates, NFB's tragedies, even taking to the streets in a July Rabby appeared on a television news pro- 1974 demonstration. gram insisting that blind people did not In the early 1980s, ACB organized Con- need gates to use the subway system safely. cerned Citizens for Subway Safety, a coali- Rabby's argument was that subway gates, tion of provider and consumer groups of which were actually for the protection of blind and partially-sighted people deter- all passengers, were considered as serv- mined to get the MTA to take action to ing the needs of only blind passengers. prevent people from falling onto the sub- Rabby feared that the public's assumption way tracks. When the former director of the that blind people required special treat- Blind Veterans Association, David Schnair, ment would adversely affect their partici- fell between two cars onto the tracks, he pation in society-for example, in employ- was saved from serious injury or death ment, housing, and transportation. The by a bystander. As a consequence of the conflict between the two major national unemployed bystander's actions, he not organizations of blind people left policy- only acquired a job but also received a makers bewildered. ACB won its Section 504 congratulatory call from President Reagan. of the Rehabilitation Act of 1973 lawsuit This kind of rescue, however, was an ex- against the MTA in 1985, as the U.S. District ception. A week later, on December 27, Court in New York considered the lack of 1982, a well-known and well-liked employee subway gates to be discriminatory against of the Lighthouse, Bert Zimmerman, was blind people. 24 CHAPTER TWO NFB: Trailblazer for Sections 504 peatedly passing the required Foreign Ser- and 501 vice examination, each time with a higher grade, Rabby was judged "noncompetitive" Although the president of NFB tends to in 1987 because of his "serious lack of visual determine the organization's general prin- acuity." When disability attorney Tim Cook, ciples and specific agenda, NFB president disabled as a result of polio, saw Rabby on Kenneth Jernigan's lack of enthusiasm for "Good Morning America" debating George coalition did not preclude NFB from using Vest, director general of the Foreign Service, its unique lobbying capability to support on the feasibility of a blind person serving Sections 504 and 501 of the Rehabilitation in the job Rabby was seeking, Cook offered Act of 1973-the first federal civil rights law to represent Rabby in a Section 501 lawsuit. and affirmative action law, respectively, for At Minnesota Congressman Jerry Sikorski's people with disabilities. When John Nagle, congressional hearing on this issue, the director of NFB's Washington office, testi- room was stacked with about two hundred fied on January IO, 1973, before the Senate members of NFB. "Anyone who walked into Subcommittee on the Handicapped of the this buzz saw could see that the disability Committee on Labor and Public Welfare discrimination of the Foreign Service was on the proposed Rehabilitation Act, he was about to end," Rabby notes as he recalls his the only witness to comment specifically difference with the State Department: on Section 504. Demonstrating his recog- nition of the potential significance of Sec- They argued that a Foreign Service Officer is expected, for example, to be able to go tion 504 before most other representatives anywhere the Service decides. It's called of disability groups did, and transcending "the principle of worldwide availability." the NFB's traditional position focusing on Since I'm blind, there may well be places I the rights of the blind, Nagle manifested his can't go. But there are places that sighted solidarity with all people with disabilities: people can't go also because of their language "The provision [Section 504] is of major limitations, the needs of their families, and so on. Discrimination takes a form of consequence to all disabled people. It es- tablishes that because a man is blind or deaf employers applying unrealistically demanding standards that they would like to apply to or without legs, he is not less a citizen, that everyone, but apply only to the person his rights of citizenship are not revoked or with a disability. A year or two after I filed diminished because he is disabled. More- my successful lawsuit, Edward Perkins, an over, Nagle indicated his early appreciation African American, replaced Vest and changed of the legal ramifications of Section 504: the discriminatory policy of the Service "It gives him [a person with a disability] a against women, minorities, and people with disabilities. legal basis for recourse to the courts that he may seek to remove needless barriers, The approach of both Nagle and Rabby unnecessary obstacles and unjustified bar- was an anomaly for NFB because the or- ricades that impede or prevent him from ganization tends to focus solely on issues functioning fully and in full equality with related to blindness. Still, NFB, the most all others." significant civilian disability rights group As a significant force in NFB, Rabby used until the early 1970s, exhibited its under- Section 50I of the Rehabilitation Act of 1973 standing, from the 1940s, of two character- and the support of his organization to be- istics of the modern disability rights move- come the first blind diplomat in the Foreign ment. First, not only did NFB's struggle Service of the State Department.57 After re- concern equality for blind people, but sec- SEEING BY TOUCH, HEARING BY SIGN 25 ond, equality could be achieved only if blind cover several feet wide at the edge of subway people advocated for themselves. However, with and train platforms.⁵ While ACB argues. few exceptions, the third characteristic, the that these strips prevent blind people from concept of coalition with different disability falling onto the tracks, NFB claims that groups, has been antithetical to the spirit properly trained blind people do not need of NFB since Jernigan's emergence as its this special accommodation. leader. While Jernigan feared that blind peo- ACB's Karen Luxton Gourgey, formerly a ple lose political clout when they affiliate member of NFB, considers what she calls with other disability groups, ACB has always NFB's "tyrannical" position on warning supported coalition. strips "an expression of self-hatred," a re- fusal to allow blind people "a margin for error."59 Crediting NFB with having "politi- NFB and ACB: Different Approaches to cal savvy, good Washington connections, as Blindness well as admirable membership drives and fundraising strategies," Gourgey nonethe- NFB and ACB offer different reasons for less judges the organization's approach, the emergence of the dissident NFB fac- since Jernigan's leadership, as "a betrayal tion that eventually became ACB in mid- of the original NFB vision: It's okay to be 1957. NFB claims that the new faction was what you are." Gourgey observes that NFB, a puppet of nonprofit and government ser- fearing that blind people will be viewed as vice agencies, many of which benefited from incompetent, "is more worried about pro- the same workshops that NFB sought to jecting the 'wrong' image or burdening the reform by organizing the workers. Accord- taxpayers than about safety." ing to NFB, when dissenters lost elections Rosemarie McCaffrey, president of Guide held from 1957 to 1960, they decided to form Dog Users in New York, notes that her their own opposing group, ACB. On the organization could thrive only in ACB since other hand, ACB contends that the split NFB considers the use of guide dogs as emanated from NFB's authoritarian lead- "a too dependent way of traveling." On ership and undemocratic policies, resulting the contrary, McCaffrey points out that she in the national organization's arbitrary ex- finds the use of a guide dog liberating: "I pulsion of four NFB state delegations, as can walk faster with a guide dog than with a well as the dismissal of several high-ranking cane. With a cane, I almost have to walk into NFB officials. something I'll have to detour around, but Even more than twenty years later, issues the dog takes me around the obstacle in the continue to divide ACB and NFB. For exam- first place. I certainly feel safer traveling at ple, NFB fiercely defends the right of blind night with a dog, so I'm less limited than I've passengers to sit in emergency evacuation ever been before.' Because NFB President seats on airplanes and to keep their long Jernigan himself used a sighted companion, canes at their seats rather than in baggage his wife, for traveling, McCaffrey indicates compartments. Often using folding long that she is mystified by his organization's canes, ACB members do not consider ei- position on this matter. ther of these matters to be of paramount In 1972, some ACB members in New York concern. Another issue that aggravates the City who were using guide dogs worked rift between the two groups involves "de- together to pursue their own issues, join- tectable warning strips," truncated domes ing Guide Dog Users, Inc. (founded in joined together in a long narrow ground New York in 1969), an organization that 26 CHAPTER TWO would remain independent of, but affili- Yet recriminations on both sides have not ated with, ACB. After spreading to almost abated, and when problems occur affecting twenty states, Guide Dog Users-supported blind people, the different approaches of by members of ACB-initiated two projects: the two organizations often rekindle old an- a national lawsuit dealing with Hawaii's tagonisms. The public strife between NFB noncompliance with the Americans with and ACB not only confused supporters of Disabilities Act and a New York City ef- the disability rights movement, but also fort known as "Operation Refusal." Be- continues to serve the purposes of those cause there were no reported cases of ra- unsympathetic to the movement who argue bies in Hawaii, all dogs, even guide dogs, that there is no way to satisfy the contra- were prohibited from being brought into dictory demands of disability groups. For the state. The Hawaii affiliate of Guide example, Philip K. Howard asks in The Death Dog Users won the Americans with Dis- of Common Sense, "Why is it appropriate to abilities Act lawsuit contesting this ban, handle [disability] issues as a 'right''' if, as just as Guide Dog Users in New York, us- the director of New York's Office for the ing police officers as decoys in New York Disabled is reported to have said, "You can't City, were successful in discouraging taxi- please everybody?"⁶² cab drivers from refusing to pick up blind Although differences between NFB and people with guide dogs. Despite its signifi- ACB may support Howard's argument, in cant role in disability politics, NFB requires most cases even when two disability groups that its members conform to the position of have favored different accommodations, a the leadership, while ACB offers its mem- compromise has been negotiated that sat- bers the freedom to use their own judg- isfied both sides. To illustrate, corner-curb ment regarding their participation in dis- cuts required by wheelchair users present ability advocacy. a problem for blind people who no longer Although for many years after the divi- have a step to warn them that they are in sion the dispute between NFB and ACB re- the street. One solution that emerged in the mained bitter, by the 1980s the two organi- mid-1990s was a "detectable warning strip" zations were occasionally working together across curb cuts, cautioning blind people on specific issues. For example, NFB and that they are approaching the edge of the ACB joined together to save blind people's sidewalk. At the same time as a sense of right to send mail without postage, known unity was being forged between different dis- as Free Matter for the Blind, as well as to ability groups in the late 1960s, the seeds support a new library for the blind in New of dissension became increasingly apparent York City, the Andrew Heiskell Library for not only within the blind community but the Blind and Physically Handicapped. In also the deaf community. addition, the two organizations united in support of a separate agency-the New York State Commission for the Blind and Visu- Deafness as Culture ally Handicapped-to serve the vocational needs of blind people so that they would Just as NFB defines blindness as a "charac- not have to be accommodated by the vo- teristic," many deaf people, especially those cational agency for the general disability who became deaf prelingually, refer to them- population, the New York State Vocational selves as Deaf people (with a capital "D") in and Educational Services for Individuals order to assert their identity as a linguistic with Disabilities. minority with their own culture. To dis- SEEING BY TOUCH, HEARING BY SIGN 27 ability activists working to consolidate their American Sign Language movement, the efforts of these subgroups- NFB and Deaf people-to distinguish them- The culture of Deaf people emanates from selves from the disability community seems and remains centered on their language, to be an attempt to escape the stigma of American Sign Language.67 Oliver Sacks disability. The view of Deafness as culture suggests that William Stokoe's 1960 instead of disability is given credibility by "bombshell" paper on Sign Language Struc- noted deaf linguists, Carol Padden and Tom ture, the first-ever serious and scientific Humphries, in Deaf in America,63 and by attention paid to 'the visual communica- Oliver Sacks, professor of clinical neurology, tion system of the American deaf," ush- in Seeing Voices.⁶⁴ ered in the movement of Deafness as cul- Nadina LaSpina, president of Disabled ture.⁶⁸ Barbara Kanapell, founder in 1972 In Action (DIA) of Metropolitan New York, of Deaf Pride, an organization devoted to presents an opposing view: Deaf consciousness-raising, credits Stokoe's work with fostering a special linguistic iden- It's obvious that Deaf people have accepted tity.⁶⁹ Sacks affirmed Kanapell's insight: "It the nondisabled majority's definition of took Stokoe's [1965] dictionary, and the le- disability. They do not want to be defined as disabled because they don't want to shoulder gitimation of Sign by linguists, to allow the all the negative baggage that comes with the beginnings of a movement toward deaf territory. Well, neither do we. That's why we're identity and deaf pride," as well as "a dis- working hard to free ourselves and them from covery or rediscovery of the cultural aspects all that baggage. By separating themselves of deafness." from us, by calling themselves members of a Deaf people who identify themselves with linguistic minority and calling us disabled, Deaf culture do not perceive themselves as all they are doing is perpetuating the notion that disability is bad. And they're not really belonging to a disability group; rather, they helping themselves since the nondisabled consider themselves as members of an eth- majority is still going to think of them as nic group with an inherited language and disabled.65 a culture "in the traditional sense of the term, historically created and actively trans- Professor Frank Bowe, who is deaf and mitted across generations." Bowe explains a member of the Department of Counsel- the rationale of Deaf people with the fol- ing, Research, Special Education and Re- lowing illustration: habilitation at Hofstra University, argues that the "Deaf culture advocates cannot Were a deaf person to walk into a hotel at have it both ways."66 Indicating the con- which two conventions were being held-one tradiction in their position, Bowe points of individuals with physical and mental disabilities, and the other of people speaking out that "they cannot on the one hand languages other than English-at which benefit from the IDEA [Individuals with would this deaf person feel most at home? Disabilities Education Act], Section 504 [of The leaders of the Deaf culture movement the Rehabilitation Act of 1973], the ADA, say the second-the meeting of people who etc., provisions guaranteeing free public speak different languages. Those people need education, social services, and protection interpreters to help them to understand against discrimination-all of which costs people who speak different languages. Those people need interpreters to help them to money, and at the same time hold them- understand people who speak English; so selves apart from others who also benefit do Deaf people. Those people would have from such provisions." difficulty reading and writing English, not 28 CHAPTER TWO only in speaking and understanding speech advocates of Deaf culture really want these in it; so do Deaf people. On the other questions answered in the affirmative.⁷ hand, individuals with physical and mental disabilities usually have no problems using English, and do not need interpreters.⁷¹ The Gallaudet University Uprising To the dismay of most hearing people, "so strong is the feeling of cultural solidarity Focusing on Sign and Deaf culture as the that many deaf parents cheer on discovering inspiration for the movement that culmi- that their baby is deaf." Learning they nated in the 1988 uprising at Gallaudet Uni- could choose to abort if their fetus had versity from March 6 through March 13, inherited their predisposition to deafness, Sacks seems to have underestimated the piv- some deaf couples indicate, on the contrary, otal role of the disability rights movement that they would choose to abort if the in the students' demands. Although Sacks fetus did not inherit their deafness. Because sees the Gallaudet protest emanating out their inability to communicate with the of the 1960s rights movements, he treats hearing world caused many deaf people to the struggle of people with disabilities as feel isolated and excluded, they created their just one of the contributing factors, equal own community, as well as a legacy that to the others. He perceives Deaf culture as they wished to pass on to their children. a movement in itself, not as part of an over- President of the National Association of arching movement for people with all types the Deaf, Roslyn Rosen, a deaf daughter of of disabilities. deaf parents and a mother of deaf children, The primary grievance that ignited the explains why she would prefer not to be student demonstration was the fact that cured of her deafness: "I'm happy with who Gallaudet, dedicated to the higher educa- I am. Would an Italian-American rather tion of people who are deaf or hard of be a WASP?" hearing, never had a deaf president since its Unlike Rosen, however, more than 90 per- founding in 1864. Sacks quotes a Gallaudet cent of deaf children in the United States professor exhorting the protesters: "Virtu- are born to hearing parents, a statistic dis- ally every black college has a black presi- tinguishing Deaf culture from most other dent, testimony that black people are lead- cultures.⁷³ In fact, critics argue that the ing themselves. Virtually every women's col- focus on Deaf culture has been excessive, lege has a woman as president, as testament given the almost eleven million Americans, that women are capable of leading them- age fifteen and older, who have difficulty selves. It's long past time that Gallaudet hearing ordinary conversation (even with had a deaf president as testimony that deaf the help of a hearing aid), and the rela- people are leading themselves." In fact, the tively small number who use American Sign action at Gallaudet culminated not only in Language, roughly one-half million. 74 More- the appointment of its first deaf president, I. over, giving Deaf culture minority status King Jordan, but also in setting the stage for is fraught with potential problems: Since the 1990 Americans with Disabilities Act.⁷⁷ Sign is the first language of hearing children Sacks mentions contributing factors to of Deaf parents, should these children be the Gallaudet revolt: "the mood of the considered Deaf? Should deaf children be '60s, with its special feeling for the poor, removed from their hearing parents so that the disabled, minorities-the civil rights they may be raised in a family of their own movement, the political activism, the var- appropriate culture, Deaf? It is unlikely that ied 'pride' and 'liberation' movements."78 SEEING BY TOUCH, HEARING BY SIGN 29 Yet, consistent with the proponents of Deaf the Rehabilitation Act of 1973 and the ADA culture, Sacks does not view the Gallaudet of 1990. struggle as arising out of an ongoing move- ment of individuals with all varieties of disabilities to advocate for themselves. Dis- Black Deaf Advocates ability rights advocates, however, represent- ing the broad spectrum of disabilities, em- Just as members of Deaf culture did not braced the rebellion at Gallaudet, not only appreciate that their movement was part of as an integral part of their struggle, but a broader disability rights movement, they also as the continuation of an already es- failed to recognize the extent to which they tablished precedent. An at least equally dra- accepted general public values. Not only did matic event, though less publicized than the Gallaudet mirror the racial segregation of Gallaudet eruption, had occurred in 1977- the time, but also as late as 1980, many the twenty-five day sit-in by disability rights black deaf people felt so alienated, cultur- activists at the San Francisco headquarters ally and linguistically, from the mainstream of the Department of Health, Education, deaf community that they formed their own and Welfare to demand the signing of the political group, Black Deaf Advocates. In groundbreaking regulations implementing Stigma: Notes on the Management of Spoiled Section 504 of the Rehabilitation Act of Identity, Erving Goffman points out that "it 1973. should come as no surprise that in many In addition, leaders of this 1977 victory, cases he who is stigmatized in one regard perhaps the most significant ever for people nicely exhibits all the normal prejudices with all kinds of disabilities, included deaf held toward those who are stigmatized in people. In fact, one of the prime movers of another regard."⁸⁰ One effect of racial seg- the Section 504 demonstrations was Frank regation, legal and de facto, was that the Bowe. While in No Pity Joseph Shapiro de- sign language of black deaf people deviated scribes the Gallaudet demonstration as "a enough from the sign language of white defining moment for the disability rights deaf people that signed communication be- movement" because of the media atten- tween the two populations was difficult.⁸ tion it captured, he characterizes the 1977 Because of this segregation, few black protest as "a blip on the screen of the na- deaf people belonged to the National Asso- tional consciousness."79 Still, the San Fran- ciation of the Deaf (NAD), founded in cisco sit-in-the culmination of the nation- 1880 as the political organization to op- wide demonstrations for the signing of the pose the onset of oralism. Since many Section 504 regulations-was the first ma- of the black deaf individuals who joined jor coordinated political action by people NAD felt alienated from the white ma- with different disabilities to affect the gen- jority, they assembled informally after the eral disability population as well as the NAD meetings to discuss their own is- wider society. Furthermore, this 1977 sit-in sues. By 1980, one hundred years after the resulted in the implementation of major formation of NAD, these informal gather- disability legislation of which the Ameri- ings developed into Black Deaf Advocates cans with Disabilities Act was the logical (BDA). Consisting of twenty-two chapters, extension. Unlike legislation dealing with including the New York City chapter estab- other classes, the federal civil rights pro- lished in 1983, national BDA meets annu- tection for people with disabilities is em- ally in different locations throughout the bodied in two separate acts: Section 504 of United States. 30 CHAPTER TWO Sign language interpreters for black deaf deaf children from kindergarten through people are often their own hearing children. high school, illustrates the evolution in Since the interpreters who are "certified"82 the modern education of the deaf.⁸⁵ Bern- according to the standards of the educated stein taught deaf children at the Lexington white deaf majority are not sufficiently School for the Deaf in Manhattan from comprehensible to many black deaf people, 1965 to 1966 and at St. Joseph's School for black deaf people require interpreters who the Deaf in the Bronx from 1967 to 1969. can employ signs familiar to them. These She says she felt "brainwashed" into think- interpreters, although they lack certifica- ing that sign language was "ugly, barbaric, tion,⁸³ perform a vital function. Yet, they do and bad" for deaf children. Oralism was the not have the status or the imprimatur of teaching method at the time. legitimacy of the "certified" interpreters. Is- After leaving St. Joseph's in 1969, Bern- sues that concern the black deaf population stein resumed teaching at the school in also apply to other minority deaf groups, 1978, at which point she discovered that the such as Native American deaf people. More- educational method had changed to "total over, the problems are complicated by eth- communication," a technique using spoken nic deaf groups who use American sign lan- English and signed English concurrently. guages other than American Sign Language, Signed English is English with the vocab- as for example Latino deaf people and the ulary of sign language and the word order variety of Asian deaf populations.84 and grammar of spoken English. The the- Funding has become available to improve ory was that employing this method, deaf the skills of minority interpreters in order children learned sign language and English to enable them to become "certified." To at the same time. According to Bernstein, "It illustrate, LaGuardia Community College didn't work. English and sign language have in New York City received a 1996 grant that different grammars and structures. Also, mandated that the institution's interpreter unlike English, 90 percent of sign language program include the training of black in- is body language and facial expression." Ju- terpreters. Yet Celeste Owens, a member of dith Cohen, executive director of Access Re- Minority Interpreters for the Deaf, indicates sources, an organization providing training that little effort has been focused on the on disability access issues including deaf- limited comprehension of many minority ness, offers this comparison: "While English deaf people: "They may prepare minority is linear, sign language is visual and three- interpreters very well, but if the community dimensional. Although sign language has is not being kept up, these wonderful sign- some iconic features, it is also an abstract ers will not be understood by the people for language like English." whom they are signing." Bernstein says that studies in the early 1980s proved that deaf children of deaf par- ents understood the grammar and concepts Education of Deaf Children of language better than deaf children of hearing parents. The reason for this phe- An increasing awareness of the variety of nomenon was that "deaf children of deaf ethnic deaf communities was fostered by parents were exposed to the complete use a new respect for sign language evident in of language through sign from birth, while the gradual change from oralism to sign- deaf children of hearing parents were learn- ing in the American school system. The ex- ing the most primitive gestures." As a re- periences of Marcia Bernstein, who taught sult of these studies, American Sign Lan- SEEING BY TOUCH, HEARING BY SIGN 31 guage (ASL) has become a significant tool Despite the antagonism of deaf purists, in educating deaf children. Bernstein be- the ability to speak and lip-read offers the lieves that deaf children are ready and able deaf person the advantage of the entry into to acquire English as a second written lan- the hearing world. Book editor and colum- guage once they concretely and conceptu- nist of the Chicago Sun-Times, Henry Kisor, ally understand the grammar, syntax, and postlingually totally deaf and completely vocabulary of a sign language, such as ASL, oral, disparages ideologues of both camps- as a first language. Unlike signed English, signers and oralists. Making a case for tai- which uses sequential word order as in spo- loring the teaching methods to the specific ken English, ASL communicates in a sys- needs of the individual deaf learner, Kisor tematic, ideogrammatic performance. Now fears the "New Orthodoxy," ASL, is merely Bernstein believes that she uses "total com- replacing the "Old Orthodoxy," oralism.⁸ᶜ munication" more effectively than she did Supporting Kisor's position, Keith Muller, before studying ASL, for she employs ASL as executive director of the League for the Hard the medium for explaining the concepts es- of Hearing-the nation's oldest and largest sential for comprehending English. In fact, hearing rehabilitation and service league- Bernstein maintains that "ideally teachers maintains that "there is no single method of deaf people should be thoroughly profi- by which all deaf kids can be educated." cient in ASL." Following the lead of a handful of state- supported schools-in places like California Helen Keller, the Social Reformer and Indiana, and charter schools in Min- nesota and Colorado-a New York City pub- With the removal of barriers to education lic school for the deaf instituted a landmark and improved teaching techniques, people change, in March 1998, requiring all teachers with significant sensory disabilities-even to instruct primarily in ASL. As the New York dual disabilities such as Helen Keller's deaf- Times reported: blindness-increasingly have been able to contribute to society. A pioneer in the strug- They [educators and advocates for deaf gle for disability rights, Keller was a highly- children] say deaf students should be treated like bilingual students, not disabled ones. gifted hard worker who used her appeal- In their view, students first need a primary ing personality and physical attractiveness language-American Sign Language-before to raise money internationally for blind they learn a second language, in this case, people.⁹¹ But she also had the good for- English. In 1867, all twenty-six schools for tune to have both the resources of a well- the deaf used ASL. By 1907, all 139 such schools connected family and the innovative edu- had forbidden its use in an effort to make the cational strategies of an inspired teacher, deaf more like hearing people. Instead, they Anne Sullivan. were taught to read lips or [sic] to speak. New York's embrace of American Sign Language Who can forget such moments in Keller's reflects a pendulum swing back. autobiography, The Story of My Life, as the way Keller learns, and delights in, the ex- Consistent with this bilingual approach to perience of language, first comprehending teaching deaf students, a growing number the meaning of the concrete term "water" of colleges and universities-such as Brown, and later the abstract concept "love"?" One Georgetown, Chicago, Yale, and the Califor- lesson evident from Keller's education is nia state system-have accepted ASL in ful- that by means of an intermediary, a kind of fillment of foreign language requirements.88 translator similar to the modern "facilitated Chapter Three Deinstitutionalization and Independent Living THE TREND IN THE late 1950s and early tend college after graduating from high 1960s toward deinstitutionalization allowed school, she was told by a social worker that people with severe physical disabilities to "this idea is a fantasy, and fantasy can lead begin entering the mainstream, bringing to mental illness."¹ Emerman, however, not a new population to the developing dis- only graduated from college and earned a ability rights movement. Nearly all peo- master's in social work at Columbia Univer- ple with serious physical impairments had sity, but she also became a psychiatric social trouble coping with a physical environ- worker at Bellevue Hospital. By 1990, Emer- ment so ill-adapted to their needs, and man was a wife, a mother, and director of the many were spurred into activism by the Mayor's Office for People with Disabilities discrimination and lack of understanding in New York City. Others like Emerman, they encountered. who would become significant players in the disability rights movement, would follow this first test case out of Goldwater to live Deinstitutionalization independent lives. Among them was Marilyn Saviola, also An early experiment in deinstitutionaliza- a quadriplegic wheelchair user, who in her tion occurred at New York City's Goldwa- late teens organized a separate ward for ter Memorial Hospital, a long-term chronic young adults at Goldwater: care institution, where it was anticipated that people would remain their entire lives. [Previously] a young person might be next to Although hospital officials assumed that a dying octogenarian. "This was where the these individuals, most of whom had se- people the world wanted to forget about were vere motor impairments, could not func- thrown," Ms. Saviola said. Then she and other tion in the mainstream, in 1958 a twenty- young people took the social activism of the one-year-old quadriplegic wheelchair user, 1960s to heart and pressed for their own ward. "We fought very hard to get that place," said Anne Emerman, was selected as a test case Hermina Jackson, a quadriplegic who [also] in independent living for this population. later left Goldwater to become active in the When she requested the opportunity to at- disability rights movement. "I don't think a 34 CHAPTER THREE lot of us knew how much potential we had Still required to live at a subsistence level, until we moved over there."2 ten years later, in 1983, Saviola became ex- ecutive director of the Center for Indepen- More like a college dormitory than a dence of the Disabled in New York (CIDNY), unit in a chronic care hospital, the young the first independent living center in New adults ward had brightly painted walls, "a York State. recreation room with a stereo, a kitchen Reflecting a new federal objective of in- where residents pitched in to prepare din- cluding people with severe disabilities and ners and [to arrange] expeditions to Broad- expanding its coverage to include individu- way shows." Chosen for their compatibility als who might not be able to secure employ- with young people, hospital personnel in ment, but who could live independently, this new ward did not wear uniforms, and the term "vocational" was eliminated from an elected council of residents advocated the title of new legislation, which when for the ward. Despite the many residents enacted was simply called the Rehabilita- who used respirators or ventilators, the at- tion Act of 1973. Advancing the deinsti- mosphere of the unit was typical for coeds tutionalization process, this more expan- of the 1960s: "There was rock music, late sive view of rehabilitation services focused night bull sessions and experiments with on self-direction, rather than employment. smoking and alcohol," as well as "romance." Yet, as disability policy expert Edward D. One of the young nurses in the unit, Deri Berkowitz noted, "By the late 1970s, those Duryea, explained, "They were sent there to identified as severely disabled [people like die, and suddenly they had life." Saviola] accounted for more than half of the Saviola began her emergence from insti- vocational rehabilitation caseload."⁴ tutional life in 1965 by being the first pa- Many formerly institutionalized people tient to attend college while still residing with significant disabilities residing in the at Goldwater.³ Because New York State Vo- community lived in dread of being forced to cational and Educational Services for Indi- return to institutions when their caretakers viduals with Disabilities (VESID) claimed could no longer provide for them. Paralyzed that she was incapable of working, she was by polio at ten years of age, Bernice White, unsuccessful the first time she tried to get a highly intelligent and beautiful woman financial assistance for college. Yet Saviola in her early twenties, prepared a lethal was not discouraged. As she explains, dose of pills in the late 1950s to ensure that she would die before she would be I appealed to Senator Javits, and he interceded institutionalized again. Although by 1960 on my behalf, referring to the federal she was married and living in her own home, Vocational Rehabilitation Act. As a result, VESID gave me a semester's tuition on a she was not alone in preferring death to probationary basis. After I got a bachelor's "incarceration" in a nursing home.⁵ from Long Island University and a master's In the late 1970S, Lyn Thompson of Cal- in rehabilitation counseling from New ifornia, immobilized by muscular dystro- York University, I figured out a way to live phy, was told she was not disabled accord- independently. I rented my own apartment ing to Medicaid law because she earned in 1973. Medicaid paid for my 24-hour live- more than two hundred and forty dollars in personal assistance services attendant, a van, and a driver, so that I was able to work a month operating an answering service as a rehabilitation counselor at Goldwater. from her home.6 Consequently, she lost But to keep Medicaid, I had to live at a her income maintenance, her health cover- subsistence level. age, and her personal attendant. Informed DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 35 that she would be forced to enter an in- previous autonomy. Implementation of the stitution (at a considerably increased cost new "vendor" system galvanized these con- to taxpayers), Thompson could not accept sumers into banding together to form a the loss of independence she had estab- unique personal assistance program, com- lished with such difficulty. Despite her ef- plying with all government regulations, in fort to be a productive member of society, which they maintain their independence. Lyn Thompson, penalized by archaic laws, Founded in 1980, this new program, Con- took her own life in February 1978. The cepts of Independence,8 has grown from September 30, 1978, CBS-TV broadcast of serving four consumers in the five coun- "6o Minutes" focused nationwide attention ties of New York City to serving more on this tragedy. than a thousand consumers in twelve coun- Thompson was not informed about a per- ties, seven of which are outside the city. If sonal assistance services program evolving these consumers had used traditional home at that time in California that may have care in 2000 rather than Concepts of In- prevented her suicide. Ironically, on March I, dependence, the services would have cost 1978, less than one month after Thompson's the state an additional $28 million. Join- death, a new California law allowed people ing with groups such as the Alzheimer's with severe physical disabilities to receive Association and Sick Kids Need Involved full support services while employed. More- People (SKIP), Concepts of Independence over, in 1977 after a reevaluation of a New began in November 1997 to include con- York City program permitting employed sumers who required surrogates-usually consumers of personal attendant care to family members-to direct personal assis- receive these services, the New York City tance services. To ensure that the pro- Human Resources Administration decided gram is appropriate for those who use per- not only to continue the program, but also sonal assistance services, most board mem- to extend it to future consumers who would bers are long-term Concepts of Indepen- be employed. dence consumers. Earlier, in 1976, New York City established Chairing the board from its inception the Independent Contractor Home Care until her death in 1994, Sandra Schnur- System, a program enabling self-directing quadriplegic as a result of polio and di- consumers of personal assistance services rector of the New York City Office of to hire, train, supervise, and fire their own Half-Fare Transportation for People with attendants.⁷ Because the program paid only Disabilities-initiated and guided the pro- the minimum wage without withholding gram utilizing her organizational skills and taxes and provided no employee benefits, political connections. the Independent Contractor System failed Marvin Wasserman, Schnur's husband, to comply with various state and federal describes his wife: regulations. Furthermore, the system did not offer support to the non-self-directing In 1952, Sandra, a wheelchair user who and frail elderly. As a result, New York had just graduated from high school, was City initiated a "vendor" program in 1979- advised by OVR [the Office of Vocational a new system in which the city contracted Rehabilitation, which later became Vocational and Educational Services for Individuals with nonprofit, community-based agencies with Disabilities] to become a basket- to manage the employment, training, and weaver. Considering that she had weak supervision of home care employees-thus hands because of polio, this job was a depriving self-directing consumers of their poor choice, especially for a person with 36 CHAPTER THREE her intelligence. When she asked to go person is sometimes almost an invasion of to college instead, she was told that she their privacy. But that boy did so well and was uncooperative, and her OVR case was turned out to be so fiercely independent closed. Thirteen years later, when OVR that he made a believer out of me," offered to send her to college, she needed he added. two years of tutoring in mathematics, King said he then began to realize the science, and foreign language to make inadequacies of the educational programs up for the inadequate home instruction for the handicapped. And, when he became she had received. After graduating from president of the college here in 1953, he college, Sandra earned her master's in set about attempting to correct those rehabilitation counseling. Among her many inadequacies, at least at his own school. accomplishments, she wrote New York with "We are blessed here with a campus without Ease, an accessibility guide for wheelchair hills and not so large that the handicapped users in New York City-maybe the first students can't get around," he said. "We'll of its kind-published by the Easter Seal gradually get this campus so that a student Society in 1963. But she considered her can go anywhere day or night whether he is contribution to Concepts of Independence blind or paralyzed." Years later, King said, her greatest achievement.⁹ "We've had no disciplinary problems with handicapped students except for one boy who ran his wheelchair too fast down a Programs like Concepts of Independence re- campus walk. "10 vealed that many people with severe disabil- ities could live independent, self-directed After the first of these students graduated lives in the community more economically in the late 1950s, enrollment of students and productively than in nursing homes. with severe disabilities steadily increased at Kansas State Teachers College.¹¹ One of the first college programs specifi- Early Accessibility Efforts cally geared for people with disabilities was in the Colleges established in 1948 on the wheelchair acces- sible campus of the University of Illinois. 12 The story of Dr. John E. King-who in Since in World War II paraplegic soldiers 1953 became president of Emporia State survived combat for the first time, they re- Teachers College, now Kansas State Teach- quired accommodations never before pro- ers College-also illustrates how, when peo- vided, such as a barrier-free college environ- ple with severe disabilities are given oppor- ment, in order to participate in activities on tunities, common assumptions about their an equal basis with other students. Because limitations may be dispelled: of the foresight of Tim Nugent, founder and director of the Division of Rehabili- Dr. King first seriously considered the idea of educating the handicapped at a regular tation Education Services, the University college campus when he was the provost of Illinois developed services and programs at the University of Minnesota's campus at designed for students with disabilities. An Duluth. He recalls that a Hungarian English accessible paratransit system-a method of professor at the school discovered a youth transportation using lift-equipped vans- in Duluth who was extremely able, but was was devised for the limited area of the cam- almost totally paralyzed. Believing in the pus. Furthermore, Nugent initiated a sports boy's mental ability, the school hired two football players to carry him, feed him, and program, which has evolved into a multi- tend to all his wants. faceted curriculum allowing students with "At first we felt we were exploiting the a variety of disabilities to engage in ath- boy," King said. "You know, helping a letic competition. DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 37 The University's acceptance of students own self-doubt and the general skepticism with increasing degrees of disability neces- concerning the opportunities that would be sitated the provision of independent liv- available to him. 14 Roberts recalls: ing services. By the fall of 1962, students with severe disabilities shared responsibility I had a serious fever, and in twenty-four for the operation of the newly established hours, I was paralyzed and in an iron lung. Within earshot, my mother asked the doctor University of Illinois residence, the Guy M. whether I would live or die. "You should Beckwith Living Center, renamed Beckwith hope he dies, because if he lives, he'll be no Hall in 1992. Until the 1970s, the University more than a vegetable for the rest of his life. of Illinois was one of the only major uni- How would you like to live in an iron lung versities with both a wheelchair-accessible twenty-four hours a day?" So I decided to be campus and programs specifically designed an artichoke-a little prickly on the outside for students with disabilities. 13 but with a big heart. The transition was hard. Everyone made While the veterans' disabilities were all the outlook [seem] bleak. I decided that I war-related, the reasons for civilians' disabil- wanted to die. Now it's very hard to kill ities varied greatly-from polio to cerebral yourself in a hospital with everything set up palsy to accidents and innumerable other to save your life. But the mind is a powerful causes. Since they needed alterations for ac- thing. I stopped eating. They started to force- cessibility in the built environment, these feed me. It was really demeaning. I dropped individuals were motivated to seek alterna- to fifty-four pounds. My last special duty nurse left, and the next tives to preconceived notions-for example, day I decided I wanted to live. You see, that regarding transportation and architecture- was a big turning point. Up until then, these as well as to consider legal and political nurses were available and doing things for me tactics to accomplish these goals. Early pro- around the clock. I didn't have to make any grams developed on college campuses for decisions for myself because they were always students with disabilities were initiated by there. When they all finally left, that's when I nondisabled people. However, by 1971 in realized that I could have a life, despite what everyone was saying. I could make choices, Houston, 1972 in Berkeley, 1974 in Boston, and that is freedom. I started to eat again.¹⁵ and later in other localities, people with different disabilities would establish and Although Roberts completed his first direct their own centers for independent three years of high school at home by living-sometimes forming coalitions with means of a telephone connected to the like-minded groups-as they began to de- classroom, both his mother and his social mand social change that would enable them worker told him during his senior year that to participate in the wider society. if he did not leave the house then, he never would. Roberts describes his first experience attending school with other students: Ed Roberts and the Independent Living Movement I had taught myself glossopharyngeal breathing-frog breathing, where you swallow The counterculture activism of the stormy air into your lungs, so I had been spending Berkeley campus of the 1960s and early 1970S time out of the iron lung before. But I was resonated in Edward Roberts's energetic, scared to go out and be seen by people. I remember that day very clearly. I arrived anti-institutional biases. Severely disabled during lunch time. My brother lowered me by polio at the age of fourteen and encour- out of the back of the station wagon, and aged by a feisty mother, he overcame his it was like a tennis match-everyone turned 38 CHAPTER THREE to look at me. I looked at someone, right in Hospital, on the edge of the campus. Soon the eyes, and they turned and looked away. there were a bunch of us crips at Berkeley. That was when I realized that maybe it wasn't It was an exciting time. The protests and my problem; maybe it was their problem. student movements were rising all around us, I checked myself out, and I realized two and we were right there. John Hessler [another things. First, their looking at me didn't hurt, Cowell resident] and I used to roll right up physically, and secondly I realized, hey, this is to the front of the demonstrations and stare kind of like being a star-and I've been a star down the police. What could they do? When ever since. 16 they threatened to arrest us, we just asked them, "How are you going to get us there? Deciding on a career in political science, Do you have an iron lung in your prison?" Roberts acted on his mother's suggestion That's one drawback of the Americans with that he select a university based not primar- Disabilities Act I guess, because they didn't have accessible jails back then, which meant ily on accessibility, but on academic excel- they didn't arrest us.²¹ lence in his field. "Armed with self-esteem and a portable respirator, [Roberts] broke Influenced to some degree by the impact the disability barrier to higher education, by of the 1963-1964 Berkeley Free Speech Move- insisting that he had a right to an education, ment, Roberts and his followers were more by insisting that the doors to the Univer- profoundly affected by the eruption at Peo- sity of California at Berkeley be opened."¹⁷ ple's Park in Berkeley in late 1964, as well Roberts had to sue to gain admission to the as the students' reaction against the over- University of California in 1962, just as in whelming police presence in the university the same semester James Meredith required town. 22 Yet Roberts also acknowledges his a lawsuit to become the first black person debt to the Women's Movement: to attend the University of Mississippi. 18 "When I first began talking with the admin- I learned a lot from the Women's Movement. istration," Roberts explains, "they told me, They used to let me go to their meetings; I guess they saw a connection between our 'We tried cripples, and they don't work. "19 experiences. I remember them talking about After his successful lawsuit against the how to deal with stereotypes of weakness and university, Roberts still had the formidable passivity that society placed on them. I heard task of arranging for appropriate housing. women talk about how they had manipulated Because of the severity of his disability, he men by capitalizing on these stereotypes. I was attended to at the Berkeley Infirmary, realized that disability is actually a strength. Cowell Hospital, by orderlies doing public If someone comes up to me and doesn't look me in the eye, if all they see is my ventilator service as an alternative to military service and my chair, I can tell right away. If they in Vietnam. 20 Steeped in the political milieu don't see me as a human being, if they only see of this makeshift dormitory, Roberts recol- my equipment, I know that I can get whatever lects how he and the quadriplegics that fol- I want out of them. As long as this is not used lowed him to the Berkeley campus created pathologically, but to create beneficial change a spirited atmosphere on the third floor of for others, it is a strength. Disability can be Cowell Hospital. very powerful. We used the power of disability in political strategies many times.²³ They [the university administrators] didn't As Roberts reveals, not all civil rights ac- know where to put me. The dorms weren't accessible, and we had to find a place that tivists, however, recognized the connection would accommodate my eight hundred- between their causes and his cause: "I re- pound iron lung. They finally decided that member meeting with Leonard Pelletier [the I could live in a certain ward of Cowell Native American activist] before he was ar- DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 39 rested. I met with Stokely Carmichael and tional and even international prominence. others in the Black Power movement. When Roberts explains: I told them that we were all fighting the same civil rights battle, they didn't believe Most people never thought of independence as a possibility when they thought of us. me; they didn't understand our similarities. But we knew what we wanted, and we set I did. Even now, many people don't real- up CIL to provide the vision and resources ize it." to get people out and into the community. Invited by his former college adviser, The Berkeley CIL was revolutionary as a Jean Wirth, to assist her in developing a model for advocacy-based organizations; nationally-funded pilot project for minor- no longer would we tolerate being spoken ity university students, Roberts submitted for. Our laws said that at least 5I percent of the staff and board had to be people a grant proposal for people with disabili- with disabilities, or it would be the same ties as a minority. After being funded, this old oppression. We also saw CIL as a model proposal became known as the Disabled for joining all the splintered factions of Students Program (DSP) at Berkeley. Es- different disability organizations. All types of tablishing an agenda that suited these stu- people used and worked in our center. This dents' needs-wheelchair repair, accessible was the vision we had for the future of the movement.²⁴ housing, attendant care-they formed the Rolling Quads, a political group that would Carr Massi, a leading organizer of the make wheelchairs commonplace in the first independent living center in New York Berkeley community. Roberts comments: City, the Center for the Independence of the Disabled in New York (CIDNY), relates her My mother Zona managed the attendant impressions of the CIL in 1977: pool. I remember we sent someone to visit with a high ranking military official who was The Center for Independent Living in responsible for the conscientious objectors. California, which I visited in September, Edna Brean [DSP representative] met with is an impressive operation Some people him and told him about what attendants have the impression that CIL is a "village" do for people with disabilities and that of people with disabilities. It is not. It deals conscientious objectors would be ideal for the in services, counseling, and training. job. This official was enthusiastic; he thought There is peer counseling, legal assistance, this was like a punishment for these people job development, training in independent who refused to fight. So, we got them signed living skills, and health maintenance. The up. These were the kind of people we wanted CIL degree program is the only one in the to work with. We were very lucky. United States that focuses on the psychology of disability, using the peer counseling Struggling against the agency mental- approach practiced at the center. All this ity that fostered dependence, the Rolling is funded by private foundations and by Quads worked toward achieving a barrier- the government.25 free campus, one significant component of Influenced by the CIL, Berkeley was re- their effort to become self-reliant. Impelled ferred to by the New York Times as the "mecca by their desire to be in charge of their own for the handicapped,"26 the city where peo- lives, the Rolling Quads moved out of the ple with disabilities were accepted as an in- hospital and into the Berkeley community. tegral part of the community. Also, given Spearheaded by Roberts, they organized an the diversity of Berkeley, people with vari- agency in 1972 governed by and for people ous disabilities looked just like one other with disabilities, the Center for Indepen- unusual group that populated the area. dent Living (CIL) that eventually gained na- Roberts notes: 40 CHAPTER THREE We secured the first curb cut in the toward people, and therefore toward disabled country; it was at the corner of Bancroft people, exists. and Telegraph Avenue. When we first talked I found people helpful but not over- to legislators about the issue, they told us, solicitous. In restaurants, hotels, and shops, "Curb cuts, why do you need curb cuts? We people are more used to seeing people in never see people with disabilities out on the chairs and understand how to best serve streets. Who is going to use them?" They their needs. didn't understand that their reasoning was circular. When curb cuts were put in, they Jane Wipfler, a founding member of the discovered that access for disabled people New York Metropolitan Chapter of the Na- benefit many others as well. For instance, tional Paraplegia Foundation, expresses her people pushing strollers use curb cuts, as feelings about living in northern California, do people on bikes and elderly people who can't lift their legs so high. So many people where she moved to from New York City benefit from this accommodation. This is in 1975: what the concept of universal design is all The most exciting news I have to share is the about. Now Berkeley is a very accessible city. attitude of people out here. Everywhere I go, We [people with disabilities] are visible in I see "wheelies"-rock concerts, flea markets, the community because we can get around movies, grocery stores, on the streets. Many everywhere fairly easily. buildings display the wheelchair accessible I look around, and I notice that a lot emblem, and the front seats of all buses are of us are getting gray. As we get older, reserved for the elderly and the handicapped. we realize that disability is just a part of I've seen quadriplegics literally fly down some life. Anyone can join our group at any fairly steep hills in Berkeley without attracting point in life. In this way, the disability much attention. It really heartens me to see rights movement doesn't. discriminate. the handicapped as part of the community. So those of us who are temporarily able-bodied and working for access and As founder of the Berkeley CIL, Roberts accommodation now get older, and the changes they make will benefit them became the embodiment of the principle of as well.27 self-determination for people with disabili- ties. Roberts indicates how he harnessed his anger so that it fueled his creative energies: Two personal experiences evoke the at- Most psychiatrists and service professionals mosphere of the Bay Area in the 1970s. 28 who work with us tell us that anger is a bad Simi Kelley, a wheelchair user, describes her thing-a stage to get over or something that summer in Berkeley in 1975: we need to overcome. But anger is a powerful energy. We don't need to suppress or get Rounding the corner to my street, I see over our anger; we need to channel it into three or four beautiful, blond California making change for the greater good. We need women surrounding a young handsome man to make sure that we don't turn our anger sitting in a wheelchair. They're out there on in on ourselves or our loved ones, but focus the street throwing yogurt at one another and it on removing obstacles and making things laughing like they'll never stop. happen I get angry all the time. I'm angry I go out to the store. I don't stop and think that people with disabilities are second-class about it; I just go. There are curb cuts on citizens in this country. I get angry at how every corner, so I don't have to deliberate over 97 percent of the billions of federal dollars every maneuver. spent either perpetuate our dependency on There are many disabled people in Berkeley the system or increase it.²⁹ (often called Berzerkeley), and they are such an outgoing, active group that the ground In order to foster independence for peo- has been broken. A whole different attitude ple with severe disabilities, the original CIL DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 41 was the model, not only for the satellite disabilities while I was there. If he ever had a agencies in each of the twenty-eight Cali- question, he would come to me directly. I fornia counties, but also for the hundreds went straight from being on welfare to this throughout the United States and in other state government position. People asked me if I was going to become a bureaucrat. I told parts of the world. Assistant Secretary of them, "No, I think I'll be an 'advocrat." Education Judith E. Heumann, who in 1978 was senior deputy director of the CIL, re- In this position, which he held for eight lates the accomplishments of members of years, Roberts was responsible for twenty- the CIL by engaging in an imaginary di- five hundred employees and a budget of alogue between observers of the CIL and $140 million. Robert Levine, San Francisco CIL representatives: Bay Area Accessible Transportation Planner, who contracted polio when he was fourteen, "There's something that's going right. They're remembers Roberts: producing more rehabs than rehab, and why is that happening?" We are saying it is very When Ed became the head of the simple: Disabled people know what disabled Department of Rehabilitation in California people need and want. (That is not true for in the seventies, he was like a kid who had all of us, but it is for many.) As a result of slipped into the establishment. The faithful that, we are able to help people move on. We would go up to Sacramento and talk about are peers. We are role models. That is critical. how it was to be on the inside. Ed developed When we go into most "establishment" countywide CILs around the state, such as organizations, we hardly meet any disabled the San Francisco one at 812 Mission Street, individuals; there are no peers that we can where many of us joined together to discuss look up to. I never met a disabled professional issues and plan strategies. until I was in my twenties. I had only I also remember Ed speaking in New nondisabled role models-who are not role York in 1991. It was the annual meeting of models to me because I am not nondisabled. disability organizations held at the Republic That oppression, which goes on, on a day- Bank, and Ed gave a great speech on why to-day basis, is something that we in the we should be proud to be disabled. It was independent living programs have been able a rousing tour de force. Later he was asked to change.³⁰ to name the three things most important Acquiring his bachelor's and master's de- to the disability community. He answered, "Advocacy, advocacy, and advocacy." When grees, as well as an appointment in politi- I saw him at Gracie Mansion the following cal science, at the University of California year, he was, as usual, seeking money for the at Berkeley, Roberts struggled against the World Institute on Disability. "Hi Bob, how prevailing assumption that his disability are you doing?" he said, and I was impressed. negated his intellectual capacity and his Ed hardly knew me, and if he remembered my employment potential. When Jerry Brown name, he must have remembered thousands was elected governor of California in 1975, of others. A good trick if you're trying to get money.32 he appointed Roberts director of the State Department of Rehabilitation. Roberts In 1983, Roberts and Heumann founded recounts: the Oakland California World Institute on Disability (WID), a nonprofit public pol- When I finally met him [Governor Jerry icy, research, and training institute estab- Brown], he asked, "Are you one of the leaders of this [the landmark disability rights sit-in lished to achieve independence and im- of 1977]?" I told him that I was, and he proved quality of life for people with dis- listened. Not only did he hire me, but he abilities. WID works collaboratively with a never cut program funding for people with local, national, and international network 42 CHAPTER THREE of people with disabilities as well as policy- azine Mouth: The Voice of Disability Rights, re- makers, corporations, and nonprofit orga- members Roberts as the person to whom nizations.³³ In order to raise public aware- she was directed when she had questions ness of disability issues and the indepen- about disability rights history. She was told dent living concept, Roberts traveled to Rus- that "Ed Roberts has all the answers," but sia, Australia, Japan, and France. His I984 she did not see him that way: MacArthur Foundation Award helped fund many of his WID activities. Ed didn't, as he was the first to admit, have all the answers. But there was genuine treasure A unique and innovative force in the mod- imbedded in his tales of the early days of IL ern disability rights movement, Roberts was [Independent Living]. He had stories enough mourned throughout the world by many to make me wish, today, that I'd recorded people, including the disability community, every one of them. Both Billy Golfus [writer when he died at the age of fifty-six of car- and director of the well-received documentary diac arrest in Berkeley, California, on March film about the disability rights movement, 14, 1995. Although several independent liv- When Billy Broke His Head] and I say we miss him most late in the evening. That's when ing centers (ILCs) were initiated before the Emperor Ed the Head held phone court from Berkeley CIL, Roberts deserves credit for the iron lung where he spent his nights. being the founder of the ILCs because of Ed sent me a video about the first Center for his success in establishing a nationwide, Independent Living, the CIL in Berkeley that and even a worldwide, Independent Living he helped to found. That video was a sixties Movement. Dr. Frank Bowe, professor at period piece showing the IL guys wearing Hofstra University, tells about Roberts's ef- so-stylish bell bottoms and stringy long hair. The founders of IL were bright white male fect on people: students of a prestigious university who grew I think Ed had a "visionary" bent that people up in homes where families could describe found inspiring. He had the ability to think themselves as "comfortable." In the '40s and in very broad terms and to speak in an '50s, polio had knocked down those families' all-encompassing way so that everyone who most-likely-to-succeed kids like bowling pins. listened to him felt included in what he America's best and brightest had been had to say and encouraged to do more and transformed over night into second-class better. He was one of the first to get the citizens by a microscopic organism with a idea that it was not just his job to "deal long Latin name with" his disability; rather, society had some What caused them to question their obligations, too. In the 1960s, the very concept second-class status? They'd hatched out of that the University of California at Berkeley privilege and protection into a world that and the City of Berkeley had responsibilities was changing radically. A people's cry for to accommodate for Ed's needs and for liberty and justice was visible, audible, and those of other students like him was radical. haunting America on its nightly news. The Certainly, it never occurred to me in four nation sat witness while solemn black people years of college that Western Maryland stood their ground as sheriffs set dogs on College should accommodate my needs [as a them for having the nerve to sit down at deaf student]. I just never thought of it that lunch counters, go to schools, or both way. I saw'a college that worked the way it Black pride arose from white oppression and worked, and I thought my job was to adjust black poverty. to that way-or get out. But once someone The independent living revolution arose like Ed introduces a new way of thinking, from among privileged white boys. And, bless it can spread-as it did! I was one of many them, those boys stormed the barricades to who benefited.³⁴ free us [people with disabilities] from the medical model. They fought tooth and nail for Lucy Gwin, editor of the bimonthly mag- curb cuts and restaurant access, and a new, DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 43 improved vocational rehabilitation system. tion Agency to cofound the Boston Cen- Ed Roberts did, later, rise above his privileges ter for Independent Living (BCIL) in order to spend the last years of his life touring the that people with severe disabilities could country for Partners in Policymaking. He function autonomously outside an insti- spoke then of freedom for everyone.³⁵ tution. Like the Berkeley CIL, BCIL pro- vides peer counseling, personal care atten- dant services, advocacy, and employment Proliferation of the referrals, as well as information regard- Independent Living Concept ing community-based housing and assis- tive devices. Berkeley was a harbinger for what was to Experiencing disability discrimination come, and what is still in the process of hap- after he broke his neck in a 1967 car accident, pening, as other cities become increasingly Lex Frieden became an advocate for disabil- accessible, though the climate, transporta- ity rights and independent living.³⁷ When tion, and culture may not be as hospitable Frieden, a wheelchair user, was refused to people with disabilities in other locales admission to the completely wheelchair- as they are in the Bay Area. The Boston accessible Oral Roberts University in 1968, Center for Independent Living was. estab- he indicates how he became aware of the lished in 1974 by Fred Fay, a quadriplegic similarity between racial prejudice and prej- disability activist and a Ph.D. in psychology; udice-based on disability: Paul Corcoran, a physician in rehabilitation medicine; and Robert McHugh, a rehabili- The school was built according to 1960s architectural standards-level with tation counselor.³ After Fay broke his neck wide doorways-so although wheelchair in 1960 at the age of sixteen as a result of accessibility was not deliberate, it seemed a a fall from a trapeze, he spent two years good place for me to go to school. When rehabilitating at Warm Springs, Georgia, they wouldn't accept me because they said where he experienced people with disabili- my presence in a wheelchair would be an ties serving as board and staff members. Fay imposition on the other students, at first I received his undergraduate and graduate was disheartened. But in a few days I realized that this was discrimination-just like the degrees from the University of Illinois, an in- discrimination people of color had to deal stitution noted for being receptive to and ac- with-for a characteristic over which they had cessible for students with severe disabilities. no control and for which there was no logic. With his vision of the potential of disability The next school I applied to, the University independence encouraged by Warm Springs of Tulsa, was built according to 1930s Ivy and the University of Illinois, Fay initiated League standards with many steps, so the dean of admissions had to meet me in a halfway house in a Boston nursing home the parking lot. He told me that the new for people with severe disabilities who had building would have level entrances, and no family or friends to provide care. if I would plan my schedule early, all my Perceiving these nursing home clients as classes would be in that building until people who were "incarcerated against their other buildings became accessible. This will," Fay indicates that "their only crime was reasonable accommodations before the was needing attendant care in the morning term was invented. Then he said that the and at night; otherwise they were pretty University of Tulsa would be honored to have me. After I filed a 1976 complaint against much independent for the rest of the day." Oral Roberts, I received an apology and an Disillusioned by this experience, Fay ob- invitation to attend the institution. Some of tained funding from the State Rehabilita- my colleagues suggested that perhaps Oral 44 CHAPTER THREE Roberts University had originally rejected me ing, as well as to advance the use of research because I would have been an embarrassment project results. considering Oral Roberts's reputation as a Two accessible apartment complexes- faith healer. Creative Living I and II-built in 1974 and 1986 in Columbus, Ohio, served as tem- While at the University of Tulsa in 1968, porary independent living environments Frieden helped organize a disability rights for young adults with severe physical dis- organization, Wheelchair Independence abilities who were pursuing educational Now (WIN), but the name was soon changed or vocational training or beginning em- to Win Independence Now: "We realized ployment.4 These programs, funded by that not all people with disabilities were the Department of Housing and Urban in wheelchairs, and we shared common is- Development (HUD), prepare quadriplegic sues." About the same time that Roberts wheelchair users for self-sufficient futures. founded the CIL in Berkeley, Frieden orga- However expensive the cost of subsidiz- nized Cooperative Living, an independent ing these residents may appear, approxi- living center in Houston, Texas, "that at- mately thirty thousand dollars a year for tempts to bridge the gap between hospital six years per person, the investment is pru- and community by means of a six-week dent because of the long-term dividends. program that teaches independent living If recipients of Creative Living Services be- skills."³⁸ In 1975, the same year that he was come gainfully employed rather than to- elected as the first secretary of the national tally dependent on Medicaid, society ben- disability rights organization, the Ameri- efits by both their professional and eco- can Coalition of Citizens with Disabilities nomic contribution. (ACCD), he formed the Coalition for Barrier When the Rehabilitation Institute of Chi- Free Living, an organization focusing on cago organized an independent living com- accessibility issues. mittee in 1978 in order to set up an ILC, the Founded by Frieden in 1977, the Inde- institute's plan was to establish transitional pendent Living Research Utilization (ILRU) housing for recently-disabled people who program, the think tank for the Indepen- had completed rehabilitation.⁴¹ A member dent Living Movement, defined the con- of the committee, Marca Bristo, newly re- cept of independent living.³⁹ Serving as a habilitated following a spinal cord injury, national center for information, training, asked a provocative question: "Where do research, and technical assistance in inde- we go after we leave transitional housing pendent living, ILRU incorporated indepen- when there's no accessible housing?" Hav- dent living provisions in the Rehabilitation ing just attended a conference in Berkeley Act of 1978. ILRU's staff, mainly people with on sexuality and disability, Bristo was keenly disabilities, develop techniques for accumu- aware of the variety of disability accommo- lating, synthesizing, and distributing infor- dations being provided in the San Francisco mation concerning independent living for Bay Area. Supporting Bristo in her concern, national and international rehabilitation other members of the committee pointed and educational agencies and institutions, out that what was really needed was ac- consumer organizations, and other inde- cessible, affordable housing, where people pendent living centers and councils. Similar with disabilities could live independently to the World Institute on Disability, ILRU's alongside nondisabled people. "We don't goal is to increase and disseminate knowl- want to live in segregated, special housing," edge and understanding of independent liv- asserted Bristo, expressing the sense of the DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 45 committee. Responsive to the committee's state legislation mandating "visitability"- recommendations, the institute abandoned basic access to newly-built single-family its original plan, and instead in 1980 estab- homes for which owners receive financial lished Access Living, the independent living or other assistance from city or state gov- center of Chicago. ernment.⁴⁵ Known across the nation for President and CEO of Access Living since its pioneer work in fair housing,⁴ Access its inception, Bristo has helped to create a Living also provides technical assistance model independent living center that serves on the Fair Housing Amendments Act to all of Chicago.⁴² Access Living provides the over five hundred organizations across the four core ILC services: information and re- United States. ferral, peer counseling, independent living training, and advocacy. Unlike many of the other centers, however, Access Living treats Characteristics of litigation of disability lawsuits as a signifi- Independent Living Centers cant aspect of advocacy. With a civil rights team consisting of two staff attorneys and Certain services are basic to all ILCs, yet two technical assistants, Access Living deals they vary in their programs, staffing or- with a variety of disability issues includ- ganization, and funding sources, as well ing access to transportation and to schools, as the consumers they target. Some ILCs discrimination in housing, availability of are associated with uncommon services; for home services, and denials of sign language example, one of the first services offered interpreters for the deaf. With the excep- by the Berkeley CIL was wheelchair repair. tion of housing cases, the center's focus Two early ILCs founded in New York City- has been on large-scale cases to achieve sys- the Center for Independence of the Dis- temic change. abled in New York in 1978 and the Brook- Consistent with its initial purpose, Access lyn Center for Independence of the Dis- Living supports lawsuits filed against vio- abled (BCID) in 1979-include personal at- lators of the federal Fair Housing Amend- tendant, deafness and blindness services, as ments Act of 1988, which not only protects well as housing, benefit, and transportation people with disabilities against housing dis- information. In addition, CIDNY, in part- crimination but also requires that housing nership with Tisch Hospital (one of the developers comply with the principles of facilities at New York University Medical "adaptable design."⁴ Developed in the mid- Center), provides primary care services to 1980s by the disability community in con- people with disabilities. While Bronx Inde- junction with architects, adaptable design pendent Living Services helps crime victims incorporates certain fixed access features with disabilities, Queens Independent Liv- but allows others to be added to existing ing Center (QILC) includes the Cork Art structures as they are needed. Thus, this Gallery, which displays the work of artists design enables all people to remain in their with disabilities. Because people from eth- homes if their physical conditions change nic and racial minorities were underserved as a consequence of disability or age.44 by ILCs, Harlem Hospital-in conjunction Adaptable design, however, applies only with QILC and Sylvia Walker of Howard to newly constructed multi-family dwellings University-created the Harlem Indepen- with four or more units that were ready for dent Living Center (HILC) in 1991, the last first occupancy on or after March 13, 1991. of six ILCs in New York City, all of which In addition, Access Living supports city and remain in existence today. At the same time 46 CHAPTER THREE QILC, like many other ILCs, developed mi- the general public, regarding disability civil nority outreach programs to deal with mul- rights legislation. ticultural disability issues. An ILC in a state where disability ac- tivists are well organized has an increased Independent Living as an probability of receiving state funding, al- Extension of Rehabilitation lowing it to join with other ILCs from that state to form a network. Some states with Independent living centers were an exten- effective ILC networks are California, Illi- sion of the concept of rehabilitation in a nois, Massachusetts, New York, and Penn- civilian context. The convalescent project sylvania. Not only do the ILCs in these in the military hospital, the forerunner of states share information and innovative ap- rehabilitation, originated as a halfway pro- proaches, but they also gain considerable gram between the hospital and the battle- political clout. Despite their efforts, disabil- field. On the other hand, ILCs complement ity rights activists did not succeed in get- civilian rehabilitation, offering support to ting federal subsidies for independent liv- enable people with disabilities to become ing services until the 1978 amendments to integrated into the mainstream. Rehabili- the Rehabilitation Act of 1973. Although tation refers to a medical field; indepen- disability leaders requested funding for a dent living denotes people with disabili- variety of ILC programs, by 1978 ten ILCs ties relying on their own resourcefulness received only start-up money. With the pass- to acquire the social services they need in ing of the 1986 amendments to the act, order to participate in society. "It [inde- additional federal funds were provided for pendent living] is deciding one's own pat- establishment and operation of ILCs as well tern of life-schedule, food, entertainment, as legal services.⁴⁸ vices, virtues, leisure, and friends. It is the The 1992 amendments to the Rehabilita- freedom to take risks and the freedom to tion Act of 1973 increased consumer control make mistakes."51 of ILCs, for with this new legislation fed- Gerben DeJong succinctly describes the eral subsidies were allocated directly to the differences between the rehabilitation and centers rather than funded through state re- the independent living approaches to dis- habilitation agencies. These amendments ability.⁵ While the rehabilitation model lo- also mandated that each state establish a cates the problem in the person with the Statewide Independent Living Council, pri- disability, emphasizing fixing the individ- marily to prepare and monitor a three-year ual, the independent living paradigm places plan for independent living services.⁵ In the problem in the attitudes of society addition, these amendments were designed and stresses changing the environment. The to motivate ILC participants to advocate language of rehabilitation uses expressions for equal access to health care, housing, such as "patient" or "client," connoting de- public accommodations, communication, pendence on authority, whereas the vocabu- and transportation, and for equal opportu- lary of independent living employs the term nity to education and employment. Since "consumer," suggesting control by the user enforcement has not kept pace with the of the service. The purpose of the rehabilita- existing laws dealing with many of these tion prototype is to enable the person with issues, ILCs are faced with a significant the disability to be as physically and eco- challenge: to educate people with disabili- nomically self-sufficient as possible. The ob- ties, as well as businesses, government, and jective of the independent living construct DEINSTITUTIONALIZATION AND INDEPENDENT LIVING 47 is to fully integrate the person with the dis- Independent Living and the ability fully into the social, economic, and New Disability Activism political fabric of the community. The emergence of people with severe dis- abilities from institutions, in combination with the strategies for independent living Evaluation of the that allowed them to participate in the com- Independent Living Movement munity, was a pivotal force in the evolving disability rights movement. At a previous In the late 1970s, Sandra Schnur, a quad- time, many of the individuals who would riplegic wheelchair user who would be- become prime movers in the ongoing civil come chair of the board of Concepts of rights struggle for equal rights for peo- Independence in 1980, expressed concern ple with disabilities might have remained that the ILCs would become another self- hidden away in institutions or confined in perpetuating, bureaucratic layer between their homes. Edward Roberts, founder of the disabled consumer and the provider of the worldwide Independent Living Move- services. Suggesting that ILCs encourage ment, had to sleep in an iron lung. Assistant preservation of the status quo rather than Secretary of Education Judith E. Heumann, social change, Mouth editor Lucy Guin as- who founded Disabled In Action and, with serted in the late 1990s: "The ILC movement Roberts, established the World Institute on still hasn't caught up with him [Ed Roberts]. Disability, requires attendant care for ac- He was a gentle and a patient man. But he tivities of daily living. By the late 1990s, would have howled if he heard ILCs say, Boston Center for Independent Living and 'We'd love to get people out of institutions, American Coalition of Citizens with Dis- but we aren't funded for that. "54 abilities cofounder Fred Fay would be lying Yet however cautious some ILCs may be, on his back "all day, every day in Concord, others have engaged in controversial activi- Massachusetts, operating not only his home ties. For example, four New York City ILCs but also state and national political cam- provided funding for two buses of disabil- paigns and international [disability] advo- ity activists to travel to the demonstration cacy through an economical combination, organized on January 8, 1997, by Not Dead which he developed, of personal assistance Yet, the disability organization protesting and three computers."⁵ Leading disability against physician-assisted suicide in front of advocate Justin Dart added, "Our society the U.S. Supreme Court. Patricio Figueroa, [still] puts people like Fred into nursing first director of the CIDNY, pointed out homes at far more cost than would be re- that ILCs were the appropriate resource quired to empower them." for people with disabilities because the The Independent Living Movement re- service providers, themselves disabled, had flected a change in social perceptions about coped with the same problems and frus- disability as illustrated in the difference be- trations confronting their clients.⁵⁵ Tom tween two popular Hollywood films, The Clancy, NYU computer programmer and Men (1950) and Coming Home (1978). At the polio survivor, urged the disability com- end of The Men, the hero, a World War II munity to protect Ed Roberts's concept of veteran in a wheelchair, asks his wife for the ILC as an organization of people with assistance in getting up a step. This scene disabilities, advocating for and empower- signals to the audience that the disabled ing themselves.⁵⁶ veteran will be all right because he is finally 48 CHAPTER THREE able to ask for help-something he often will a former resident at Goldwater Hospital as have to do to survive in a society with so a chronic care patient, roused the audience many obstacles. A fitting finale for a film of with a challenge. Echoing images of Martin that period, this scene would not have been Luther King's "dream" and James Baldwin's consistent with the 1970S sensibility, a time "rainbow sign" and "fire next time," Clancy when architectural and attitudinal barriers invoked a new age that would supplant the were no longer deemed unalterable by the Age of Aquarius: disability community. Unlike his counter- part in The Men who deals with the necessity Look out America, because I'm coming. I of acceptance and adjustment, the disabled have always had my dream and my rainbow, Vietnam veteran hero of Coming Home learns but now the picture is clearer and the colors the value of protesting social injustice and are brighter. I have tried and failed, cried and raged in silence. I have sat and watched educating a misinformed public. because I could not keep in step with you, but The prophetic language of the I970S dis- I never gave up. ability rights activists, many of whom bene- You have not heard the last of me. In fact, fited from deinstitutionalization and inde- you have not yet heard me at all. Until recent pendent living, is reminiscent of the rhetori- times, you kept me out of sight and sound. cal exhortations of the 1960s civil rights ora- Now as you begin the search for a moral tors inspiring listeners to fight for racial jus- answer to the materialistic chaos which you now have created, my voice will rise. For I tice. For example, at "The Psychological Im- am the living proof that physical and mental pact of Disability," a conference held at the perfection are not the answer. It is the inner New York University Medical Center in New fire that will not accept the "impossible." York City on October 5, 1977, speaker Tom Move over Aquarius! There is a new dawn Clancy, a quadriplegic wheelchair user and coming.⁵⁸ Chapter Four Groundbreaking Disability Rights Legislation: Section 504 ON OCTOBER 26, 1972, and again on ing and programs in this enacted rehabil- March 27, 1973, President Nixon vetoed early itation act were reduced from the origi- versions of what ultimately became the nal proposal, neither the disability activists, Rehabilitation Act of 1973-including Sec- the legislators, nor the president, at the tions 501-504-both times asserting that the time of the act's passage, realized what had legislation was too expensive. He also ar- been wrought. gued that the act "diverted the program Although disability rights activists from its vocational objective into medi- strongly supported the Rehabilitation Act cal and social welfare policies" and "added of 1973, they did not play a role in adding a variety of new categorical programs."¹ the inserted provisions, Sections 50I-504, Throughout the country, disability activists that significantly expanded disability rights. protested these Nixon vetoes. In New York Sections 501 and 503 bar employment dis- City, Judith E. Heumann and eighty al- crimination because of disability and lies organized a sit-in on Madison Av- mandate the use of affirmative action pro- enue in October 1972, bringing traffic to grams to hire qualified people with dis- a halt.2 abilities. Section 501 applies to federal At the annual meeting of the President's agencies while Section 503 applies to recip- Committee on Employment of the Hand- ients of federal contracts. Section 502 cre- icapped in May 1973, disability activists ated the Architectural and Transportation marched to-and rallied at-the Capitol de- Barriers Compliance Board, now known manding passage of the act.³ Following as the Access Board, to enforce the Ar- this demonstration, the participants took chitectural Barriers Act of 1968, dissemi- part in an all-night vigil in the rain at nate information concerning barriers, and the Lincoln Memorial. A compromise be- provide technical assistance regarding their tween both houses of Congress and Presi- removal. Section 504, the provision with dent Nixon resulted in a watered-down ver- the most far-reaching repercussions, pro- sion of the proposed legislation, the Re- vided civil rights for people with disabil- habilitation Act of 1973, that was signed ities in programs receiving federal finan- into law on September 26, 1973. While fund- cial assistance. 50 CHAPTER FOUR The Cherry Lawsuit for the Section 504 1973, "adapted and inserted" the language Regulations of Title VI of the Civil Rights Act of 1964 at the very end of the bill.5 When the bill was As significant as this legislation was, how- enacted, this provision became Section 504, ever, its effectiveness would have been se- the first federal civil rights law for people verely limited without implementing reg- with disabilities. ulations. James L. Cherry, plaintiff in the Almost immediately after passage of the lawsuit that ultimately led to the issuing of Rehabilitation Act of 1973, Cherry began to regulations for Section 504 of the Rehabil- write letters to the Department of Health, itation Act of 1973, asserted that without Education, and Welfare (HEW) requesting these regulations "disability rights would the issuance of Section 504 regulations. still be in the dark ages, and there would Meeting with no success, he sought legal be no Americans with Disabilities Act."4 support, as well as the assistance of disabil- Steeped in the civil rights milieu of Howard ity organizations and sympathetic legisla- University Law School in 1968, Cherry, a tors. When Representative Vanik also urged white student with a severe disability, rec- HEW to issue regulations for Section 504, ognized the connection between social ac- the congressman, like Cherry, received "an commodation denied because of race and unresponsive response"; in fact, Cherry re- physical accommodation denied because of marked that "in street terms, we were told disability. Although Cherry appreciated the to go take a hike." Hospitalized at the Na- reasons for the unswerving focus on the tional Institutes of Health from 1974 to 1976, civil rights issues of African Americans by Cherry spent much of that time telephon- the Howard students, faculty, and admin- ing potential allies: "Seeing me talking on istrators, he was disappointed that his ac- the phone constantly," Cherry commented, cess issues were not addressed by repre- "some nurses asked if I was making obscene sentatives of the university. For example, phone calls." Cherry's request for a parking space near the Finally, the Washington, D.C., law firm building where his classes were held and a Arnold and Porter directed Cherry to attor- key to the elevator was rejected by the law ney Victor Kramer of the Institute for Pub- school administrators. lic Interest Representation at Georgetown When the Ninety-second Congress failed University Law School. After hearing about in 1972 to add a disability provision to the Cherry's efforts, Kramer offered this advice: 1964 Civil Rights Act-despite the efforts "Don't call anyone else; bundle up your ma- of Senators Hubert Humphrey and Charles terial and send it to me as soon as possi- Percy and Representative Charles Vanik- ble." Kramer then instructed his graduate Cherry was frustrated that he had no legal law students to prepare and file preliminary remedy for the discrimination he encoun- legal petitions for Section 504 regulations. tered. Some legislators and members of By late 1975, Kramer determined that the their staffs, however, conjectured that laws endeavor had resulted in the "exhaustion of protecting the civil rights of people with administrative procedure," legal terminol- disabilities could be tacked onto another ogy indicating that failure of the petition federal law. Indeed, in From Goodwill to Civil process, despite a sincere attempt, made le- Rights, Richard K. Scotch revealed that staff gal action appropriate. members of the Senate Committee on La- At this point Kramer asked Cherry, bor and Public Welfare, in putting together "Would you consider the next step, filing the final draft of the Rehabilitation Act of a lawsuit?" After almost two years of unsuc- GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 5I cessful efforts at employing administrative Were it not for the Section 504 lawsuit, remedies to urge HEW to issue Section 504 which resulted in the issuance of specific regulations, Cherry enthusiastically paid regulations, Cherry still believes that the the filing fees to initiate the case on Febru- history of disability law would be "a litany ary 13, 1976, against HEW Secretary David of cases, a crazy quilt of decisions, narrowly Mathews. Kramer's argument for summary defined, on issue, after issue, after issue." judgment was that since Section 504 was not Without precise regulations, Section 504 self- effecting, the need for regulations was lawsuits would be based on the succinct, implicit for Section 504 enforcement. HEW but unelaborated, language of the law itself. filed a cross motion for summary judgment Confident about his legal actions, Cherry claiming that since there was nothing in was skeptical of the value of the nationwide the legislative history of the act necessi- Section 504 protests by disability activists tating the issuance of Section 504 regula- that followed his successful lawsuit: "The tions, the law did not require comprehen- demonstrators would have been more ef- sive guidelines. fective if they had dealt with my lawyers, Fearing that a decision against Cherry coordinated with my case. In fact, the sit-ins would discourage further disability legisla- may have delayed the signing of the Section tion, Kramer asked the plaintiff if he would 504 regulations." be willing to withdraw his lawsuit if he were Questioning the advantages of organized so advised. Notwithstanding the ultimate demonstrations, Cherry wondered whether decision of Cherry's attorneys to take their these actions laid the groundwork for back- chances with a judge whom they perceived lash against Section 504, as some of those as sympathetic to their position, in Cherry's affected feared the cost of implementation. words, "It was no slam dunk." On July 19, "The impact of an individual is greater than 1976, Judge John L. Smith of the U.S. Dis- the power of an organization without di- trict Court for the District of Columbia rection," Cherry asserted, "and even orga- issued an order requiring that HEW de- nizations with direction usually get their velop and promulgate Section 504 regula- inspiration from one or two people." Cherry tions "with all deliberate speed."6 does not choose to engage in social actions Although Judge Smith had not imposed such as sit-ins and protests that place him a specific deadline, his intention was clear. in opposition to the law: "Let people like Nonetheless, in an unprecedented act, Sec- HEW Secretary Mathews get arrested, not retary Mathews sent the regulations back to me; they're the lawbreakers." the Labor and Public Welfare Committee for further review. On the same day, however, Judge Smith issued a restraining order di- Section 504 as a Spur to Political recting Mathews to issue the regulations. In Organizing order to permit the government to state its case, the U.S. Court of Appeals on January After Cherry won his Section 504 law- I9, 1977, stayed the order. The next day, the suit, the struggle of other disability ac- Carter administration assumed office and tivists to secure the signature of HEW Sec- Joseph Califano was designated Secretary of retary Joseph Califano on the regulations HEW. David Mathews was gone, the legal became the central point of a broad-based maneuvering ended, and it was now up to a movement. This effort was especially con- new administration to deal with the imple- centrated in those cities where the ten mentation of the act. regional offices of HEW were located- 52 CHAPTER FOUR Atlanta, Boston, Chicago, Dallas, Denver, ACCD, Propelling Section 504 Kansas City, New York, Philadelphia, San Francisco, and Seattle-as well as in Wash- Cofounded April 30, 1975, by people with ington, D.C. Until this point, the disabil- a variety of disabilities-Fred Fay, Judith ity rights movement had been local and E. Heumann, Ralf D. Hotchkiss, Sharon disparate. With this concerted endeavor to Mistler, Roger Peterson, Al Pimentel, and obtain implementation of the Section 504 Eunice Fiorito-ACCD received a grant regulations, the movement became national from the commissioner of the Rehabilita- and focused. tion Services Agency to serve as a national The fact that candidate Carter sought the cross-disability model.⁸ Fostering coalition- votes of people with disabilities revealed his building among disability groups through- awareness of the ballot-box clout of this out the country, ACCD played a pivotal role frequently overlooked population. Aware in the signing of the Section 504 regula- of the symbolic meaning of the location, tions. While she maintained her position as Carter made a campaign speech on Septem- first director of the New York City Mayor's ber 6, 1976, in the place that FDR had made Office for the Handicapped (later known as famous, Warm Springs, Georgia: the Mayor's Office for People with Disabili- ties in New York City) in the administration Section 504 prohibits discrimination against of Mayor Abraham Beame, Fiorito served as disabled citizens by recipients of federal first president of ACCD. financial assistance. These are fine in Fiorito, who was the driving force behind theory, but they will mean very little ACCD, suggested why Beame may have until an administration in full accord supported her travels around the country with their spirit stands behind the law. No administration that really cared about to organize the national disability coalition: disabled citizens would spend three years "Perhaps the blindness of his father played trying to avoid enforcing Section 504. No some part in the mayor's sensitivity to the compassionate administration would force concerns of people with disabilities. But disabled consumers to take it to court before Beame did warn me that if I was using it would enforce the law.⁷ New York City resources for ACCD," Fiorito continued, "the work should clearly serve Once elected, President Carter was people with disabilities in the city." These strongly urged to satisfy the interests of resources-telephoning, mailings, trips to two conflicting constituencies: the disabil- Washington-though relevant to New York ity community and the many institutions- City business, also contributed to the work including hospitals, colleges and universi- of ACCD. ties, as well as local governments-whose Fiorito honed her organizing talents federal funding would soon be affected by functioning as a staff person on New York the signing of HEW's Section 504 regula- Mayor John Lindsay's Committee on the tions. Fearing costly and burdensome re- Handicapped. Supported by committee quirements, these institutions lobbied for member Dr. Howard Rusk, in 1971 Fior- watered-down regulations. The voice of the ito developed a plan to set up a city of- national disability movement, the newly- fice for people with disabilities, the first of formed Washington, D.C.-based American its kind in the country. As Mayor Lindsay Coalition of Citizens with Disabilities, how- directed, Fiorito wrote to twenty disabil- ever, reminded the president of his commit- ity advocates inviting them to a meeting ment to people with disabilities. to discuss the possibility of initiating this GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 53 new office. Fiorito, however, also called over cratic administration than of the former Re- two hundred disability advocates, many of publican one. In order to offer their services whom appeared at that meeting. By the to expedite the issuing of the Section 504 time the mayor arrived-surrounded by this regulations, over a dozen members of ACCD throng as well as members of the press- began meeting with Califano and his staff he was forced to announce the creation of two days after President Carter took office.⁹ the New York City Mayor's Office for the About two months later, on March 18, 1977, Handicapped, Fiorito explains, rather than Bowe wrote a letter on behalf of ACCD to merely to consider the wisdom of such an Carter, with a copy to Califano, as a state- undertaking, as he had planned. ment of the organization's frustration with As president of ACCD, Fiorito, who was the government's delay.¹ Furthermore, the blind, was joined by a brilliant twenty-five- letter included a warning of ACCD's deci- year-old deaf advocate, Frank Bowe, who sion to take action if the Section 504 regu- became executive director of the organiza- lations were not signed by April 4, 1977. tion. Consistent with the unifying mission of ACCD, its director, president, and board were people with different disabilities. Fior- ito observed, "People with all kinds of dis- The Section 504 Demonstrations abilities were able to feel, it's okay to be a person with a disability. I have the same Attempts at last-moment negotiations be- rights as anyone else has. We're not just poor tween disability community leaders and people with disabilities; instead, we believe Califano failed because the new HEW sec- in ourselves. And in politics you have to have retary requested additional time to study self-respect and self-liking in order to show the Section 504 regulations. The leaders that you mean business." feared that Califano wanted this extra time The Washington, D.C., location of ACCD to weaken or evade the original intent of the provided the organization with many ad- regulations. Therefore, on April 5, 1977, dis- vantages, such as the opportunity for its ability activists demonstrated-and in many spokespeople to confer with members of locations also sat-in-at most of the HEW Congress, their aides, and other govern- offices in the ten federal regions and in ment officials. Besides raising the con- the nation's capital. The dramatic events of sciousness of Washington insiders about the D.C. sit-in, and especially the San Fran- the determination of the disability com- cisco sit-in, have been well-documented- munity, ACCD developed a rapport with for example, in Joseph Shapiro's account significant individuals in the Carter admin- in No Pity. 11 Despite Califano's refusal to istration, including Peter Libassi, aide to allow the demonstrators food or telephone HEW Secretary Joseph Califano. In fact, on access, the forty D.C. protesters remained April 28, 1977, when Califano finally agreed for twenty-eight hours. "Rather than allow to sign the Section 504 regulations, Libassi them to leave in small groups until they telephoned Fiorito in New York City at 6:45 trickled down to nothing," Fiorito decided in the morning to be certain that she ap- that they should make a dramatic exit as a proved of Califano's press release. group calling attention to the insensitivity Since candidate Carter had backed the of Califano's response to the sit-in. How- goals of the disability community in his ever valuable the determination of all the campaign for president, the leaders of demonstrators throughout the country, it ACCD expected more of this new Demo- was in San Francisco that the unyielding re- 54 CHAPTER FOUR solve of the disability community was most The 504 demonstrations last year in convincingly exhibited. California were successful for a number of As the number of days of the San Fran- reasons: because the disabled community cisco sit-in began to add up, disability ac- was united; because the disabled community tivists across the country were checking absolutely unequivocally believed that 504 was our civil rights provision; because we their newspapers with mounting astonish- knew if we did not fight for this civil rights ment and pride. "They're still there!" they provision, we were in fact going to slide kept saying. Close to half of the more than backward instead of making further progress. I20 initial protesters, representing a vari- But the other factor was that because of ety of disabilities, remained for twenty-five the programs evolving in the Bay Area that days, the longest sit-in at a federal build- were controlled by disabled individuals, and because changes were being made (curb cuts, ing. Despite the difficulties endured, partic- electric wheelchairs, Bay Area Rapid Transit ularly by the severely disabled demonstra- being accessible, etc.), we were more visible in tors who were courageous and resourceful our communities. So we went out into other enough to manage without their needed de- organizations; we approached, surprisingly, vices or attendants, the San Francisco group such groups as United Cerebral Palsy and was well-organized and widely supported. Easter Seal and those kinds of organizations Since a great number of the protesters ei- and they came in and worked with us. We ther were employed by, and/or clients of, received support from the churches and synagogues and from the labor unions. We the Berkeley Center for Independent Living, had support from all over the place. The Black they came to the experience with an estab- Panthers fed us for four weeks during the lished sense of community and, where rel- sit-in. And we were supplied with food from evant, job security. Whereas demonstrators Safeway stores. It was a totally bizarre event; in other cities had diverse occupations and it really was. People that I could not conceive employers, most of whom would not coun- of being together were living in a building on one floor for four weeks.¹³ tenance long-term absences, in a sense many of the employed San Francisco protesters were doing their jobs. Lacking the organization and experience The CIL was an integral part of the in disability politics of the Berkeley CIL, small Berkeley community, so the individu- New York City's disability community was als involved in the demonstration and their represented by a small group of about eight concerns were familiar in the general Bay people who sat in at the HEW office at the Area. Food, mattresses, and shower equip- federal building in Manhattan. Although ment were provided by sources as diverse approximately fifty disability activists ral- as McDonald's, the California Department lied in the rain outside the building, the of Health Services, and the drug program New York disability rights organizations of Delancy Houses. 12 Government officials, had decided to have only their leaders par- such as U.S. Representative Philip Bur- ticipate in the sit-in. Because coalitions of ton, San Francisco Mayor George Moscone, diverse disability groups had not yet become and State Director of Rehabilitation Ed- a reality outside of California and Washing- ward Roberts, offered their encouragement ton, D.C., the New York City contingent was and assistance. almost entirely mobility impaired. Despite Judith E. Heumann, leader of the San the regional HEW director's effort to con- Francisco sit-in and later assistant secretary vince the protesters to reconsider their tac- of the U.S. Department of Education, ana- tics, she welcomed these uninvited guests lyzed the event in 1978: into an office, allowing them to bring in GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 55 food and other supplies, as well as come and signed Section 504 regulations in order to go as they pleased. be sure that they had not been diluted. Since they had access to the phones, With the signing of the Section 504 reg- they were able to inform various media ulations, the disability community discov- outlets of the ongoing sit-in. For example, ered its muscle. Borrowing the strategy of one protester-who coincidentally had tu- passive resistance from the 1960s civil rights tored Felipe Luciano, later an NBC televi- movement, the disability activists had the sion news reporter-used that relationship advantage of usually having to contend to persuade Luciano to cover the sit-in. Hav- with, at most, condescension and hostil- ing been one of the leaders of the Young ity, rather than physical violence. Reminis- Lords-a youthful, progressive, Latino po- cent of the 1930s League of the Physically litical organization in the late 1960s and Handicapped, the Section 504 protesters ab- early 1970s-Luciano revealed his sensitivity sorbed the social consciousness of a po- to civil rights issues in his broadcast. While litically active milieu and thus exceeded the other reporters tended to concentrate their own expectations. However, unlike the on the nature and degree of the protesters' earlier efforts by the League of the Phys- disabilities, Luciano focused on the faces of ically Handicapped, these nationwide Sec- the demonstrators and on their issues. Be- tion 504 demonstrations, orchestrated by cause of their individual obligations to jobs ACCD, were an initial thrust, generating and families, the disability leaders sitting in further actions. at the New York City HEW office voted to In 1978, Hofstra professor Frank Bowe, disperse, en masse, after thirty-three hours. then director of ACCD, asked the question, Like many of the reporters, the HEW "Why did it [the signing of the Section 504 officials misjudged the demonstration. In regulations] happen?" New York City, they arranged for a nurse to stay overnight with the protesters. In For a long time I had trouble answering that San Francisco, on the first day, officials question because so many different factors served cookies and punch to the demon- and influences seemed to have combined to strators. 14 These responses reveal commonly make it happen. Then, sometime later in 1977, I happened to be reading a book about the assumed, patronizing attitudes toward peo- black civil rights movement, and I found the ple with disabilities. Adults with disabili- answer to that question This advisor [to ties were treated as if they were "medical Martin Luther King] said, "People think that models," unable to make reasoned decisions revolutions begin with injustices. They don't. about their capabilities, or as if they were A revolution begins with hope." If you think hysterical children to be placated. Surprised about that, if you move back to the Spring by the fervor, persistence, and stamina of of 1977, then you will understand that the the protesters, Califano and his staff could reason disabled people came together and demonstrated as they did in the Spring of not have predicted the twenty-five-day San that year was because they had hope. Francisco sit-in. On April 28, 1977, Califano It is a tremendously tragic commentary signed not only the Section 504 regulations upon the United States of America that it was in their original form, but also the regula- only in 1977 that disabled people came to have tions for the Education for All Handicapped enough hope to protest. It took two hundred Children Act, now called the Individuals years after this country was formed-two with Disabilities Education Act. The San hundred years-for these people to begin to have hope. That is what happened. A law Francisco demonstrators did not leave until had been passed in 1973, the Rehabilitation April 30, 1977, after they had examined the Act of 1973, and included in it was Section 56 CHAPTER FOUR 504, which many people realized was going ment was in contravention of existing leg- to become the cornerstone of the civil rights islation requiring accessible public trans- of disabled Americans. For four years we portation unless it compelled manufactur- had fought behind the scenes to try to get the ers to produce Transbus.²⁰ law implemented and enforced. And at the beginning of 1977, for the first time, we had Although the plaintiffs had no success some reason to hope that the law was at last during the Ford administration, President going to become effective.¹ 15 Carter's first Secretary of Transportation, Brock Adams, responded to the Transbus lawsuit. Consistent with Section 504, he The Transbus Controversy decreed on May 19, 1977, that all buses purchased with federal funds on or after Accessible transportation became the ma- September 30, 1979, must have the same jor Section 504 local government issue in wheelchair-accessible design as Transbus.²¹ the 1980s as disability groups in differ- Anticipating an impending congressional ent parts of the country-such as Chicago, decision to delay Transbus, the American Rhode Island, Maine, and Philadelphia- Coalition of Citizens with Disabilities, the filed lawsuits against transportation agen- National Council of Senior Citizens, and cies. Perhaps because transportation, essen- Paralyzed Veterans of America sponsored tial for social participation, is a tangible simultaneous July 12, 1978, demonstrations and easily understood cross-disability issue, in Chicago, Detroit, New York, Philadel- many disability activists were drawn to the phia, San Francisco, Washington, D.C., and cause. Also, the precipitous opposition to other cities.²² In New York City, wheelchair the mainstreaming provisions in Section users and other people with disabilities 504 by most of the transit agencies through- blocked the main thoroughfare in front of out the nation provided the disability com- the United Nations during rush hour. munity with a clear focus. Despite these protests, Congress, encour- A 1976 transportation case set the stage aged by pressure from the American Pub- for the development of a wheelchair-access- lic Transit Association (APTA)-which in- ible lift bus that-beginning in the late 1970S cluded General Motors-voted later in July in California-eventually became the pro- 1978 to reevaluate the Transbus mandate, totype for the nation. Thus, an appropri- thus deferring the development of Trans- ate technology was available for the newly- bus. In keeping with the spirit-if not the signed Section 504 regulations issued by the letter-of Section 504, Transbus allowed ev- Department of Transportation. In Disabled erybody to get on and off the bus in the In Action of Pennsylvania v. Coleman (E.D., same way in contrast to the General Motors Pa. 1976),¹ 16 known as the Transbus law- lift-equipped bus, which provides a separate suit, a coalition of thirteen disability and means of entering and exiting for people senior citizen organizations¹⁷ sued three who cannot negotiate steps.²³ Since a de- federal transportation agencies¹⁸ so that vice that all can use is more likely to be the federal government would mandate the properly maintained than one used only wheelchair accessible Transbus.¹⁹ The plain- by a particular population, Transbus, not tiffs claimed that although Transbus-the the lift-equipped bus, was the first choice low-floor, wide-door, ramped bus-was tech- of the disability community as well as the nologically feasible, it would be produced California transit agencies. only if it were required by the government. Dennis Cannon, Access Board accessibil- Therefore, they charged that the govern- ity specialist and wheelchair user, points out GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 57 that APTA disseminated misinformation liable, arrived at reasonable and predictable indicating that a low-floor bus was techno- intervals, they enjoyed comparatively high logically infeasible, especially in snowy ar- ridership by wheelchair users. On the other eas where, supposedly, inadequate clearance hand, wheelchair users, having no confi- underneath would create insurmountable dence in the poorly managed and therefore problems. 24 "Stanford Research Institute re- unreliable St. Louis lift-bus system, did not vealed that because the primary business ride the buses. Cannon observes, "To prove of General Motors was producing automo- their preconceived notion that wheelchair biles, the corporation had a disincentive users would not ride buses in significant to develop an attractive easy-to-use acces- numbers, many transit agency 'experts' gen- sible bus, such as Transbus," Cannon notes. eralized the St. Louis experience, while label- Moreover, he adds that General Motors, ing the Seattle program an anomaly. Thus, the corporate giant of the industry, had they reversed the adage, 'Success has many already retooled for a more traditional bus fathers; failure is an orphan.' than Transbus. Although Seattle and the metropolitan James Raggio, general counsel for the San Francisco area developed effective ac- Access Board, indicates that the increas- cessible transportation systems before New ing numbers of low-floor buses being pur- York City, the impact of the two smaller chased by transit agencies in the 1990s sites was limited. With residents and a work- demonstrates the technological superiority force from other localities dependent on of the Transbus design.² He observes that New York City's largest transit system in not only are these vehicles easier to board the country, this system provided the most and more comfortable to ride than most significant experiment in the feasibility of other models, but also passengers do not accessible public transportation. With an tend to trip as frequently on low-floor buses activist disability community willing to en- as they do on lift-equipped buses. Because gage in the contest, New York City would be General Motors had an economic motive a major setting for the struggle for accessible in the 1970s for preferring to add lifts to public transportation. their existing design, rather than produce A significant 1979 U.S. Supreme Court Transbus, the lift-equipped model became decision, Southeastern Community College v. the accessible bus central to the Section 504 Davis, ruling against a plaintiff, a deaf nurse, controversy. although technically limited in scope to the physical requirements of a professional training program, seemed to have ominous Accessible Transit and New York City implications for other Section 504 lawsuits. Consequently, Eastern Paralyzed Veterans Soon after the Section 504 regulations were Association (EPVA) attorney James Weis- signed in 1977, New York City disability ac- man chose to file a New York City public tivists pointed to the Seattle accessible bus transportation wheelchair-accessibility case system as the paradigm for mainstreamed (EPVA v. MTA) under two New York State barrier-free transit. Yet the mindset of most statutes that same year. He successfully ar- directors of transit agencies was revealed gued that MTA's failure to provide barrier- by their response to contrasting 1980s ac- free subway stations, when they were newly cessible bus programs, one in Seattle, the built or extensively renovated, failed to com- other in St. Louis. Since the Seattle lift- ply with the state's building code. His con- equipped buses, besides being safe and re- tention that inaccessible buses discrimi- 58 CHAPTER FOUR nated against people with disabilities under newly-purchased buses be lift equipped. Be- the state's Human Rights Law-a nondis- cause the decision did not require retro- crimination statute-did not succeed, as the fitting,³² one practical effect of Dopico was court held that the inclusion of bus lifts that it increased the acceptability of acces- was "affirmative action" and not required sible buses in the courts and initiated the by the Law.27 purchase and use of these buses in New In 1980, Disabled In Action of Metropoli- York City. In Rhode Island Handicapped Ac- tan New York (DIA) filed a Section 504 law- tion Committee v. Rhode Island Public Transit suit against city, state, and federal trans- Authority,33 the Court of Appeals (First Cir- portation agencies for "violating the rights cuit) determined in 1983, however, that "the of wheelchair users by operating buses that benefit of the purchase [of accessible buses] are inaccessible to them."28 Unlike the New to the handicapped" did not outweigh "the York State Human Rights Law, Section financial expense that would be incurred by 504 requires "reasonable accommodation," the State."3 Thus the decisions in Dopico adaptations providing access that do not and Rhode Island revealed that interpreta- incur prohibitive expense or require exten- tion of Section 504 with respect to public sive modifications. DIA's goal was to secure transportation was still evolving. a wheelchair-accessible multi-modal New From 1976 until September 1980, disabil- York City transit system, meaning fully ac- ity leaders worked together with the MTA cessible buses, "key" wheelchair accessible as part of the Tri-State Regional Planning subway stations²⁹ (an issue addressed in Commission (representing New York, New EPVA v. MTA), and a supplemental para- Jersey, and Connecticut), successfully devel- transit service in the form of door-to-door oping a Section 504 transition plan for ac- lift-equipped vans. Once the U.S. District cessible transportation. On September 19, Court (S.D. N.Y.) accepted two similar Sec- 1980, however, the MTA decided not to sub- tion 504 class action lawsuits, Dopico em- mit the transportation plan. Instead, the phasizing paratransit and DIA stressing lift- MTA asked for "a six-month extension or equipped buses, the cases were joined under partial exemption from the [Section 504] the name of the earlier of the two, Dopico requirements, on the grounds that it would V. Goldschmidt.³⁰ cost too much and force the curtailment Although the District Court ruled of service to other riders." Recognizing against the plaintiffs in Dopico, the U.S. that the goals of the MTA and the disabil- Court of Appeals (Second Circuit) found ity community no longer were compatible, in 1982 "that Section 504 does require at a broad coalition of disability groups and least modest, affirmative steps, to accom- individuals concerned with transportation modate the handicapped in public trans- organized Mobility Through Access.³ portation." Furthermore, the court de- Because of the MTA's Section 504 viola- cided that "a $6 million expenditure for tion, the first tactic employed by Mobility transportation services to the handicapped Through Access was a sit-in at the MTA out of a total federal mass transportation building in Manhattan on November 21, subsidy to [New York] City of $490 million, 1980. Led by DIA, approximately fifty peo- although a considerable sum, 'was not mas- ple, some in wheelchairs, some on crutches, sive either in absolute terms or relative to and still others accompanied by guide dogs, the city's total receipt of mass transporta- expressed their outrage by blocking the tion's assistance." four elevators that served the first twelve The Dopico decision mandated that only floors of the twenty-four-story MTA build- GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 59 ing. Not being allowed access to the bath- nonviolent civil disobedience at the MTA room, mobility-impaired activists were re- sympathetically. The New York City disabil- quired to be especially resourceful. The re- ity community considered their action suc- sult was a pail of urine left in MTA board cessful for three main reasons. First, disabil- member Stephen Berger's office. As one ac- ity activists believed that they had gotten tivist recalled, "A small support contingent the "real" facts on Section 504 requirements of some fifteen people carried posters and for accessible mass transit to the public. distributed informational leaflets on the Second, many people with disabilities who street and in the downstairs lobby. A half had never before participated in social ac- dozen of these had gotten up at five o'clock tion were motivated to continue their in- to be shuttled from their homes on Long Is- volvement in disability rights issues. And land into the City on a lift-equipped van."37 finally, lift-equipped buses that MTA had From 8:30 a.m. to 5:30 p.m., the protesters recently purchased to comply with Section occupied the main stairwell and the admin- 504 began to appear on the streets of New istrative offices of MTA chairman Richard York City. Ravitch and his staff on the seventh floor. MTA sent written notices to members of The demonstrators presented Ravitch the disability community who had attended with four demands: the Section 504 transportation meetings, (I) that the MTA submit by January 2, 1981, informing them that on September 30, 1981, the Alternative [Section 504] Transportation lift-equipped buses would be available on Plan developed in conjunction with the the MI04, M14, and B41 routes. On the disabled community to the Tri-State appointed day, wheelchair user Denise Mc- Regional Planning Commission and the Quade was accompanied by CBS television U.S. Department of Transportation; (2) that news reporter Arnold Diaz and his camera the MTA withdraw its request for a six- month extension to submit a plan; (3) that man, who planned to cover one of the first the MTA discontinue its fraudulent media uses of the new lift-equipped New York City misrepresentation of the facts concerning buses acquired to conform to the Section transportation accessibility; and (4) that the 504 mandate. When McQuade attempted MTA address the real needs of mass transit to board the Mro4 bus, however, the driver users and act in the best interest of all people, did not have the key needed to operate the disabled and nondisabled alike. lift. Other wheelchair users, such as Anne Characterizing the demonstration as inap- Emerman, later director of the Mayor's Of- propriate, Ravitch offered to negotiate with fice for People with Disabilities from 1990 a small representative group if the members to 1994, were having the same experience would make an appointment in advance. on other routes. Some have speculated that The protesters refused, indicating that they the MTA's contradictory behavior was con- had been negotiating in good faith to no sistent with the agency's conflicting atti- avail since 1976. tude toward wheelchair accessibility. What- Worried about the bad press that would ever the reason, the MTA's motive for ap- result from arresting demonstrators with parently reneging on its agreement remains disabilities, the MTA arranged for the re- a mystery. moval of the protesters by police supervised Once McQuade realized that the lift was by a team of medics. MTA's concern regard- not going to function, she lifted herself ing media coverage was well placed, for the from her wheelchair to one of the front major television networks, radio stations, steps of the bus. Diaz, recognizing that this and New York City newspapers treated the story was better than the one he had come 60 CHAPTER FOUR to cover, waited with McQuade for seven was so eager to accommodate Ellen Nuzzi, hours while the MTA officials deliberated. a scooter user, that he drove her-picking The MTA's efforts to persuade McQuade up no other passengers-directly from her to allow herself to be carried onto the home to her place of employment.³⁹ bus failed, for she persisted in her demand Still, many disability activists believed that, in keeping with Section 504, she be that the MTA was employing tactics to dis- enabled to board the bus by means of the courage ridership on the buses by wheel- lift. Finally, the MTA capitulated as the chair users. There were only a few routes bus driver obtained the required key. As on which the infrequent accessible buses McQuade got on the bus using the lift, she operated, and even those rare vehicles of- flashed the "V" sign for victory. Not only did ten did not function consistently. Although Diaz present her story on the local CBS news the MTA used various media outlets to program, but McQuade also appeared the advertise some of its programs, such as next day on the front page of the New York the unsuccessful "Train to the Plane," the Post. Ironically, but appropriately, ten years agency made no effort to publicize the lift- later McQuade was employed by the MTA. equipped buses required by Section 504. On the same day, Anne Emerman met Outside of those involved with the ac- with similar frustration when the driver of cessible transportation coalition-Mobility the bus she tried to board did not have Through Access-few wheelchair users knew the lift key.³⁸ She responded by moving about these buses. Therefore, the MTA her wheelchair to the front of the vehicle created a self-fulfilling prophecy when it and grabbing onto the windshield wipers. claimed that the accessible buses were not Perhaps, because there were no television needed since few people made use of them. cameras recording the event, Emerman was Realizing that outreach was necessary to treated more harshly than McQuade. Not increase ridership on the accessible buses, only did the police pull her fingers off the Mobility Through Access initiated "Ride the windshield wipers, but she also was given Bus Days" in order to attract media at- a summons for disorderly conduct. In fact, tention to the Section 504 mandate. Fur- one police officer remarked that she was thermore, members of the coalition recom- receiving the same kind of citation given to mended responses to the common sources prostitutes. Accompanied by her husband of frustration experienced by wheelchair and daughter, Emerman laughed at the ab- riders. For example, if for any reason the surd insinuation. Later that day, Emerman bus driver did not deploy the lift, wheelchair filed two complaints, one with the New York users were encouraged to ask the driver to City Commission on Human Rights against call a supervisor. Then they were advised to New York City Transit, and the other with stand in front of the bus to prevent it from the Civilian Review Board against the New proceeding until the supervisor dealt with York City Police Department. Since the po- the problem. lice had placed her wheelchair on the side- On the first "Ride the Bus Day," April 20, walk, Emerman never got on the bus that 1982, Michael Imperiale, disabled but not a day, unlike McQuade. Nonetheless, Mc- wheelchair user, accompanied Frieda Zames Quade's success, proving that the lifts could who was in a motorized scooter waiting for a work properly, meant that the Section 504 lift-equipped M14 bus on the corner of East accessible bus program had been launched Third Street and Avenue A in Manhattan.⁴⁰ in New York City. A day later, an overly When an accessible bus arrived, the driver solicitous bus driver of a lift-equipped bus declared, almost predictably, that the lift GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 61 was broken. After Imperiale and Zames mind her own business, and then a sum- requested that the driver call his supervisor, mons for disorderly conduct. Her convinc- they stood in front of the bus. Suddenly ing and unshakable testimony, in combina- three police cars rounded the corner with tion with the testimony of Anne Emerman great urgency. Two police officers jumped and EPVA attorney Weisman, persuaded the out and accosted Imperiale, socking him six-person jury to find on behalf of plaintiff and using a billy club on various parts of Imperiale. his body. Although Section 504 supported wheel- After this event, James Weisman, attor- chair users of public transportation, they ney for Eastern Paralyzed Veterans Asso- frequently experienced the frustration of ciation, met with success in his effort to broken lifts and untrained bus drivers. In make the police understand that attempts response, on November 4, 1982, EPVA filed of wheelchair users to board the buses, in a Section 504 transportation lawsuit, EPVA keeping with Section 504, were lawful. When v. MTA, against the MTA and New York Emerman had been mishandled by the po- City Transit for mismanagement of the lice, Weisman recommended that posters accessible bus program.⁴¹ EPVA's argument explaining correct police procedure con- was that wheelchair riders and nondisabled cerning the rights of wheelchair bus rid- riders received unequal bus service from the ers appear in every police station. Perhaps, New York City local transit agencies. The after the Imperiale incident, police offi- suit depended on more than twelve hundred cials realized that unless officers were ap- complaints filed by people with disabilities propriately trained with respect to these who had attempted to use accessible buses. issues, vulnerable people could be endan- The specific and inexpensive relief sought gered. Rather than treat the wheelchair user by EPVA included daily cycling of bus-lifts as the transgressor, the police, now cog- for proper maintenance, availability of bus nizant of Section 504, began to settle con- keys for wheelchair riders, and training of flicts amicably between bus drivers and rid- bus drivers for improved operation of lifts. ers with disabilities. Nonetheless, the cost of replacing two Despite the new police sensitivity in deal- hundred newly-purchased Grumman buses ing with wheelchair bus riders, Imperiale that had unreliable and unsafe lifts did ap- filed a civil lawsuit in U.S. District Court pear to be a stumbling block in EPVA's effort against New York City for police violation of to convince the court to mandate MTA's his rights. In 1987, five and a half years later, compliance with Section 504. Because two when the case finally came to trial, the piv- hundred buses were bought after the Sec- otal witness was a disinterested bystander, tion 504 transportation regulations of 1979 an Off Track Betting employee on her way to were signed, these vehicles had to be acces- work. Although the police officers involved sible. EPVA's concern was that the expen- in the action claimed to have been totally diture involved could be deemed extraordi- unaware of Imperiale's disability, as well as nary, causing the judgment to favor MTA. the presence of a person in a motorized These two hundred buses were the last ship- scooter, the onlooker recognized the situ- ment out of 837 Grumman buses purchased ation immediately. Her choice of language by MTA, three times the number normally may not have been "politically correct," but bought in any other single year. her powers of observation were acute. As a Despite the agency's awareness that the result of her cries to the police, "Stop hitting buses were not roadworthy, MTA rushed to the invalid," she received first a warning to sign a contract with Grumman before Sec- 62 CHAPTER FOUR tion 504 became effective in order to circum- tion?"44 EPVA attorney Weisman revealed vent the regulations necessitating accessi- that Cuomo impressed upon Kiley that the ble vehicles. In fact, MTA board member governor's administration supported lift- Stephen Berger boasted that the intentional equipped buses and barrier-free subway sta- timing of the bus purchase would save the tions in compliance with Section 504. city from spending money on accessibility. Once a settlement appeared imminent, Because of the consequence of this precipi- Mayor Edward Koch suspended transporta- tous acquisition, not only the two hundred tion negotiations on June 21, 1984, publicly accessible buses, but also the other 637 inac- announcing his objection to accessible sub- cessible buses, all the Grumman buses were ways and his support for a paratransit plan so inappropriate for New York City streets instead.4 Regarding wheelchair accessible that MTA was forced to sell the vehicles transportation as a luxury that New York at a loss. Thus, nondisabled as well as dis- City could ill afford, Koch was frequently abled riders were inconvenienced by being in conflict with the disability community. deprived of bus service and burdened by In Goodwill to Civil Rights, Scotch points out, additional taxes. "While a member of the House of Represen- Moreover, MTA began renovating ten tatives, [Koch] was a leading proponent of subway stations without including wheel- civil rights for disabled people. Several years chair accessibility in contravention of the later, following his election as mayor of New Public Buildings Law requirement that all York City, he became a prominent critic of newly-built or extensively modified sub- the accessibility requirements of the Section way stations be barrier-free. When Weisman 504 regulation."46 learned in 1982 that the MTA had ignored A resumption of talks called by Kiley on this law, he sought an injunction prevent- June 28, 1984, between the MTA, EPVA, and ing further renovations of the ten stations. DIA, nevertheless, resulted in a compro- Perhaps in order to embarrass EPVA, MTA mise, followed by a ceremony on November chairman Ravitch stopped modifications, 19, 1984, at Grand Central Station, acknowl- not only at the ten designated stations, but edging the signing of the New York State at all subway stations. Although the New Handicapped Transportation Act. In keep- York Times editorial "There's a Wheelchair ing with the Section 504 mandate, this act on the Tracks" blamed EPVA for impeding established the multi-modal transportation subway improvement, the court determined system that EPVA and DIA sought. First, that MTA was at fault.⁴³ the MTA was required to spend $5 million The 1982 election of New York Gover- per year for eight years, 1985 through 1992, nor Mario Cuomo, however, changed the to make "key" subway stations wheelchair relationship between MTA and wheelchair accessible. Second, although only 65 percent users of public transportation. Supported of all New York City buses were mandated by the disability community in his cam- to be wheelchair accessible (with equip- paign, Cuomo appointed Robert Kiley-a ment properly operated and maintained), transportation expert sympathetic to con- the MTA eventually recognized the advan- sumers of accessible transit-as MTA chair- tage of providing IOO percent accessible man. At a public forum in Brooklyn Heights buses, a decision satisfying EPVA and DIA. shortly after accepting his new position, Ki- Finally, the settlement necessitated the for- ley indicated that the first question Gov- mation of an eleven-member committee, ernor Cuomo asked him was, "What is the Transportation Disabled Committee, your view of accessible public transporta- with five members appointed by the gov- GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 63 ernor and six by the mayor, to develop encouraged applying these barrier-free de- a plan implementing a paratransit system signs and specifications of buildings and within seven months, known as Access-A- facilities for people with physical disabili- Ride. The ultimate victory of the disability ties to the BART system. The ANSI stan- community in the development of an acces- dards had resulted from a 1961 conference sible transit system in New York City paved sponsored by the President's Committee on the way for similar systems throughout the Employment of the Handicapped and the country. National Easter Seal Society for Crippled Children and Adults. Originally providing "a mechanism for creating voluntary con- Bay Area Rapid Transit (BART) sensus standards,"⁵ ultimately, these ANSI specifications would become the required New York City disability activists were con- guidelines for train and subway systems fident that their city's subway system could throughout the country. By 1965, after three become accessible in compliance with Sec- years of planning for the new BART sys- tion 504 because they knew that in the tem, the board of directors determined that Berkeley/San Francisco region such a sys- plans would be made to accommodate all tem, the Bay Area Rapid Transit (BART), categories of people with disabilities except had been operating successfully since the nonambulatory passengers. Willson, who 1970s. While those in New York City in- did not accept the argument that costs volved in accessible transit were dealing precluded the inclusion of elevators and with retrofitting an old subway system built other requirements for wheelchair users, at the beginning of the twentieth century, became a frequent speaker at conventions those in northern California in the 1960s and meetings of people with disabilities, as were planning the inclusion of wheelchair well as various social, political, and religious accessibility in the development of a new groups. For three years, a stream of letters train system. Harold Willson, senior eco- flowed to the BART board and staff from nomic analyst for the Kaiser Medical Care many of the people who had been influ- Program and a wheelchair user, was the enced by Willson, including doctors, reha- catalyst who successfully appointed himself bilitation agencies, members of Congress, the guiding spirit behind the creation of a and the board of supervisors of San Fran- barrier-free train system. cisco. Unlike tenBroek or the Gallaudet demon- On February 29, 1968, the BART board strators, Willson had no broad political requested an additional $7 million from the agenda outside of accessibility. Since he California legislature for the inclusion of lived near one BART station and worked elevators in the new train system. A colorful near another, he wanted to be able to use illustration of the pressures brought to bear the system to travel between his home and on the California legislature occurred in his place of employment. Yet, because of his March 1968: laser-beam focus on his particular concern, making BART available to wheelchair users, An ad hoc committee calling itself the he got the respect of the BART staff as they Committee for the Freedom of Mobility of the Disabled called for a demonstration. responded to the feasibility of his detailed People in wheelchairs and on crutches and specifications for wheelchair accessibility. some with white canes, all carrying banners Acquiring data from the American Na- proclaiming the need for elevators in the tional Standards Institute (ANSI), Willson BART system, converged on the construction 64 CHAPTER FOUR site of the downtown Berkeley BART station. accessible buses if at least two manufactur- Work was halted by the demonstration. The ers were willing to produce them. The sub- result was wide press coverage which added mission of bids by three manufacturers- to the public's awareness of the issues.⁵ General Motors, Flexible (earlier known as Once the BART board declared itself in Rohr), and American General-triggered a favor of the inclusion of elevators, Willson domino effect so that all the California carried his campaign to the state legisla- transit agencies sought to purchase acces- ture. Willson and the board were joined sible buses. in Sacramento, the state capital, by rep- Although the Section 504 regulations resentatives of the Architectural Barriers were not signed until 1977, Nathanael Gage, Committee of the Easter Seal Society. Af- deputy director of the Metropolitan Trans- ter the state legislature agreed in I968 to portation Commission of the Nine County guarantee the redesigning of BART to ac- Planning District around and including San commodate wheelchair users, Willson and Francisco, believed as early as 1975 that the board continued to lobby Sacramento the federal government would require all until the $150 million in additional fund- new buses to be accessible within a few ing to provide wheelchair accessibility was years. Demonstrating the forward think- allocated in March 1969. Perhaps the most ing that characterized the directors of Cal- far-reaching effect of Willson's relentless, ifornia transit agencies in the 1970s, Gage almost quixotic, determination was BART's conducted pilot demonstrations in the late role as a Section 504 model for a barrier-free 1970s to test prototype buses with wheel- train system. 52 Never again would skeptics chair lifts.54 be able to argue that trains could not be Unlike the California agencies, many made wheelchair accessible. Furthermore, transit agencies throughout the country once wheelchair users were riding the trains, did not support the creation of accessible the great distance between the Bay Area sta- buses on fixed routes because they believed tions increased the likelihood of the con- that wheelchair users would cause havoc. necting bus system eventually becoming In order to avoid the cost and the effort wheelchair accessible. involved in developing an accessible tran- sit system, many transit officials sought to have other organizations, such as social ser- California Accessible Buses vice agencies, deal with the problem. Peo- ple in these agencies, who were not trans- Perhaps because wheelchair users and other portation experts, did not always find the people with disabilities rode the BART most efficient means of transporting their system in northern California alongside clients from place to place. For example, in nondisabled people by the early 1970s, lo- many localities, accessible paratransit sys- cal transit agencies in California were es- tems were devised in which people with pecially receptive to accessible public trans- disabilities were driven in accessible vans portation. For example, Southern Califor- from door to door. As a result, public tran- nia Rapid Transit, a bus system, joined sit expert Dennis Cannon indicated, "The with two other California transit systems transit industry created a Frankenstein, a in a 1974 policy resolution that all new bus paratransit-dependent population, so that purchases would be wheelchair accessible. the industry then could go to Congress and According to California law, every transit say, 'Our consumers don't want to use fixed agency in the state was required to purchase route systems. "55 GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 65 Beginning in the 1970S, encouraged by Although Southeastern Community College the I977 signing of the Section 504 reg- v. Davis⁵⁷ was not a transportation case, this ulations, disability advocates argued that 1979 decision had a profound effect on Sec- the number of people requiring barrier- tion 504 transportation lawsuits. Frances free transportation would justify accessi- Davis, a severely hard-of-hearing licensed ble buses on fixed routes. Except in Cali- practical nurse, was denied entrance to fornia, directors of transit agencies tended Southeastern Community College's asso- to underestimate this ridership. These di- ciate degree nursing program because of her rectors soon discovered, however, that the disability. Davis contended that the college accessible paratransit systems on which the was unlawfully discriminatory, in violation industry relied were not only inadequate of Section 504, to insist that functional hear- to accommodate the disability population ing was essential for acceptance into the they served, but also that the cost of total nursing program. The college argued that dependence on this accessible door-to-door extensive modifications would be necessary transit was impractical. Although accessi- for Davis to participate safely in the pro- ble paratransit functions well as a primary gram or to practice the nursing profession. service in some small localities and as a The U.S. Supreme Court ruled for the supplementary service in many other areas, college against Davis, deciding that the ac- accessible paratransit cannot replace the ac- commodation to provide equal opportunity cessible fixed route transportation (buses constituted affirmative action, so Section and trains). 504-a nondiscrimination, not an affirma- tive action, statute-was inapplicable. The fact that one hundred and fifty hard-of- Mainstreaming Public Transit hearing and deaf nurses were already work- ing for the federal government according In the intervening years between the I977 to a 1976 Civil Service Commission survey signing of the regulations for Section 504 would have supported Davis's contention and the 1990 passage of the ADA, disability that she could work safely as a nurse. 58 Not leaders concentrated on the courts to ensure introduced in the original lawsuit, however, enforcement of Section 504. The evolution this statistic could not be used by the plain- of federal laws and litigation that provided tiff on appeal. Davis, the first Section 504 access to transportation for the disabil- case to reach the U.S. Supreme Court, es- ity population epitomizes the Section 504 tablished a disappointing precedent for dis- struggle of those who sought integration- ability lawyers because the suit set the stage as opposed to those who favored contin- for the 1981 APTA transportation decision. ued segregation-of people with disabilities. Within weeks of the 1979 Davis ruling, Section 504 in effect mandated that all re- APTA filed a lawsuit (APTA v. Lewis) in cipients of federal funds mainstream people the D.C. Circuit contesting the 1979 Sec- with disabilities. Transcending the partic- tion 504 regulations of the U.S. Depart- ulars of the case, the 1977 Seventh Circuit ment of Transportation (USDOT).⁵ Mod- Court of Appeals decision in Lloyd v. Illinois eled on the HEW regulations, these US- Regional Transportation Authority⁵⁶ created a DOT regulations-clearly a mainstreaming precedent for people with disabilities and approach-required that not only newly- their organizations to sue federal agencies purchased buses be lift-equipped, but also and recipients of federal funds to enforce that existing bus fleets must be retrofitted Section 504. with lifts. In APTA v. Lewis, APTA cited 66 CHAPTER FOUR the Davis decision, claiming that public by local transit agencies of at least 3½ per- transit accessibility would involve exces- cent of the federal funds for transportation sive expense, burdensome modifications, services for people with disabilities. "Once and technological problems, while afford- the spending requirement was met, there ing benefits for few people with disabil- would be no federal scrutiny of the extent of ities. The administration of newly-elected the transportation services provided to the President Reagan accepted the U.S. Court handicapped."63 of Appeals (D.C. Circuit) unanimous APTA By the early 1980s, accessible transit ex- decision that extended the Davis rationale pert Dennis Cannon had devised six "equiv- to public transit agencies. The disability alent service criteria" for accessible para- community had assumed that Section 504 transit based on the concept of "equiv- would advance the cause of integration, pro- alent facilitation" in the building code. 64 moting equal access to society for people The purpose of these criteria was to make with disabilities, but as a consequence of the paratransit systems, consistent with Section 1981 APTA decision, the 1979 bus retrofitting 504, function in a manner roughly equiva- requirement was invalidated. lent to the transportation service provided Required to write new Section 504 regula- to the general public. Cannon soon recog- tions, USDOT issued the 1981 interim regula- nized that accessible paratransit, even with tions until final regulations were developed. these criteria, could never provide trans- Abandoning the 1979 Section 504 main- portation services equal to public trans- streaming regulations, USDOT returned to portation. Only accessible public transit a less precise concept of "special efforts" could approach the public transportation and coined a new term, "local option." services offered to the general population. "Special efforts" made unspecified reference In 1982, in response to a request from Sen- in federal public transportation law to "the ator Alan Cranston (D-Calif.), Cannon re- planning and design of mass transportation designed his equivalent service criteria for facilities and services" so that they could accessible paratransit so that these stan- be utilized by "elderly and handicapped per- dards also could serve as minimum service sons."61 "Local option" allowed local transit criteria for lift-equipped bus systems. agencies to choose to purchase buses with The equivalence of the standards for ac- lifts, or to establish a mixed system of some cessible paratransit and lift-equipped bus lift-equipped buses and some wheelchair- systems to standards for public transit sys- accessible vans, or to institute only a seg- tems was determined by the following cri- regated wheelchair-accessible door-to-door teria: the eligibility of the ridership, the (paratransit) system.⁶² Local transit agen- response time of the accessible vehicle, the cies could employ one of these "local op- fares, the hours and days of the service, the tion" choices to demonstrate their compli- catchment area of the service, and the re- ance with "special efforts." strictions or priorities based on the purpose In elevating "special efforts" and "local of the trip. Each locality was responsible for option" over mainstreaming, the 1981 in- determining specific standards; for exam- terim regulations appeared to disability ac- ple, what might be considered reasonable tivists to have undermined the Section 504 hours and days of service in one area may national mandate for integrated accessible be unacceptable in another. The judgment public transit. Furthermore, the only cri- depended on the degree to which there was terion used to determine compliance with equivalence between the accessible trans- these interim regulations was the spending portation systems and all forms of public GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 67 transit in that region with regard to, say, the them from getting into the job market, hours and days of service. To illustrate, New the costs of forcing them to stay on the York City's twenty-four-hour, seven days a disability and welfare rolls? These are surely week availability of public transit would very substantial costs in both human and economic terms. Those are the costs that we have to be duplicated in the city's accessi- should be focusing upon and trying our best ble paratransit system and lift-equipped bus to avoid.⁶⁷ system. On December 14, 1982, Senator Cranston Later in December, Congress passed the bill referred to accessible bus service as "fast sponsored by both Senators Cranston and becoming a lost hope in many parts of the Riegle, the Surface Transportation Assis- country"; in addition, he noted that "para- tance Act of 1982, mandating that USDOT transit [service] for handicapped persons issue new regulations to establish national [is] proving to be unsatisfactory."6 Thus, minimum service criteria for paratransit he offered a clear explanation of the need services and lift-equipped buses for people to establish these minimum service criteria, with disabilities. 68 in compliance with Section 504, so that peo- In 1985, in the Alexander v. Choate Sec- ple with disabilities would be provided with tion 504 Supreme Court decision,⁶ Justice adequate accessible transportation: Thurgood Marshall, representing the ma- jority, pointed out that the use of the term Just imagine, if you need to use a wheelchair, "affirmative action" in the Davis decision the enormous barriers you would face in using those services as others use the bus or subway. has been appropriately criticized "for fail- If you need transportation to get to a new job, ing to appreciate the difference between you may lose that job because you have been affirmative action and reasonable accom- put on a paratransit waiting list. If you need modation: the former is said to refer to a to get to a medical clinic or doctor's office, remedial policy for the victims of past dis- even if you have given over twenty-four hours' crimination, while the latter relates to the notice, you might be turned down because the paratransit service has insufficient capacity. elimination of existing obstacles against the If you use the paratransit service to get to a handicapped. Thus, more consistent with government office to conduct business, you Dopico than with Rhode Island, the Choate may learn upon arrival that despite what you decision determined that accommodations had been told by phone or letter, you need for accessibility, including those for trans- to go to another office a few miles away in portation, must be made so long as they addition to or instead of where you had gone. are reasonable. Also in 1985 in Maine Associa- Obviously, in most places, you cannot use the paratransit service to complete your business tion of Handicapped Persons v. Dole,⁷¹ a federal that day or even the next; you have got to go district court criticized Secretary of Trans- back home and make a new request with a portation Elizabeth Dole's "unimaginably day or more advanced notice.⁶⁶ leisurely pace," ordering her to promulgate final USDOT Section 504 regulations for On December 20, 1982, Senator Donald accessible transportation." Riegle (D-Mich.) responded to a colleague's Published on May 20, 1986, the final Sec- question about the cost of accessible trans- tion 504 USDOT regulations required "local portation services: option" with minimum service criteria for What will be the costs of continuing the all forms of accessible transportation. Any present state of neglect? What will be the costs local transit agency, however, that spent 3 of treating disabled and elderly individuals percent of its average annual operating cost as third-class citizens, the costs of precluding on transportation services for people with 68 CHAPTER FOUR disabilities was relieved of its obligation to As Richard Treanor notes, however, in citing meet minimum service criteria. 73 In ADAPT the concurring opinion of Judge Carol Los et al. v. Dole (E.D., Pa., 1988), the plaintiff Mansmann in the Skinner case, "What re- sought to enjoin the implementation of mains unclear is how there could possibly be these final Section 504 USDOT regulations. a paratransit option as the sole and exclusive Recognizing that the "local option" pro- means of transportation of disabled peo- vision could result in a denial of accessi- ple if the regulations also require that all ble public mass transit, ADAPT was con- new buses be lift equipped, since inevitably, cerned that mobility impaired individuals cities must replace worn-out buses. "76 Pro- would be solely dependent upon segregated posed new regulations were issued by the transportation facilities. Consolidated with Department of Transportation in March ADAPT's complaint, the complaint of EPVA 1990 to conform to the Skinner decision that challenged the use of the 3 percent spending all new buses be accessible. In July of that cap as a means of avoiding compliance with year the Americans with Disabilities Act was the minimum service criteria. In addition, signed, providing further accessibility to the the plaintiffs contended that "the 3 percent pubic transit system.77 limitation chosen was selected in an arbi- The ADAPT v. Skinner decision was a fit- trary and capricious manner."74 ting end to an over twenty-year circuitous Concluding that Congress had not yet leg- course leading to a federal mandate requir- islated mainstreaming, the District Court ing accessibility of public transportation. in ADAPT v. Dole determined that US- Emanating from the effort to make the built DOT's decision not to require that all newly- environment barrier-free, accessible trans- purchased buses be lift-equipped was law- portation was the logical next step toward ful.75 Therefore, the court accepted the integrating people with disabilities into the "local option" choices allowing segregated mainstream. During the disability commu- transportation for people with disabilities. nity's struggle for accessible public tran- Yet, finding the 3 percent figure unreason- sit, seminal conflicts emerged: accommoda- able, the court decided that USDOT may tion versus affirmative action, mainstream- not use cost considerations to "abrogate ing versus special services for people with entirely the rights granted by the statutes," disabilities, local versus federal solutions of such as Section 504. Because the District disability issues, and costs versus benefits of Court upheld "local option," while at the accessibility and mainstreaming. same time denying the 3 percent cap, both Eventually, the courts asserted that ac- the plaintiffs and the defendant appealed. commodation, as long as it was reasonable, Although the Third Circuit Court of Ap- was necessary though different from affir- peals in ADAPT v. Skinner was divided on mative action. Despite the courts' acknowl- whether Congress intended "mainstream- edgment of the need for "special- services" ing" in the legislation, the plurality opinion in certain situations for some people with of the court written by Judge Edward R. a variety of impairments, mainstreaming Becker held that it was reasonable for local was the primary goal for most individuals transit authorities to use either accessible with disabilities. However valuable local ex- buses, paratransit, or mixed systems. The periments may have been in providing re- court also held that while costs could be sponses to disability issues, courts tended considered as one factor in the regulatory to move toward broad federal resolutions. process, the use of a 3 percent cost cap as Ultimately, courts came to appreciate that a safe harbor was arbitrary and capricious. an initial outlay of funds for accessibility GROUNDBREAKING DISABILITY RIGHTS LEGISLATION: SECTION 504 69 and mainstreaming, in keeping with the engineering solution available is due to the Section 504 mandate, resulted in economic attitudinal barrier, not to the physical barrier. benefits for people with disabilities as well Cannon pointed out that discrimina- as for society at large. tion against people with disabilities, lim- iting their mobility, is costly not only to the disability population, but also to the The Civil Rights Significance of wider society. Accessible Transportation This particular discrimination, of course, In his 1980 testimony before the U.S. Com- has had a profound effect on the lives of mission on Civil Rights, public transit au- disabled people. It has a psychological effect, among other things, but it also prevents thority Dennis Cannon considered the con- [them] from participating in society actively, nection between the integration of people getting jobs, paying taxes; in effect, paying of color and the integration of people with back some of the cost that is incurred in disabilities. 78 He observed that what appears providing the transportation services in the to be a problem unique to the disability first place. This lack of mobility in many population-physical barriers-is in truth a cases even affects the participation in the civil rights issue. fundamental democratic process, the right to vote. Without transportation, in many cases it is impossible even to cast your ballot in In 1954 with the Supreme Court decision an election, something which means that, at Brown v. The Board of Education, many people least in part, disabled people are excluded assumed that full integration of public far more or just as much from the process education was just around the corner. as black people were by closed polls and poll Again in 1977, when Secretary Califano signed taxes. the HEW 504 regulations, disabled people hailed the event as their emancipation and Thus, relegated to second-class citizenship expected doors to open and curbs to fall no less than people of color, people with virtually overnight. Obviously, none of these disabilities, like other minority groups, have events has occurred. required civil rights legislation in order to Barriers to the participation of black people in society are primarily institutional, secure equality of opportunity. educational, and economic. Barriers to The Section 504 struggle for inclusion the participation of disabled people in of people with disabilities into the main- society include all of these, plus the stream was played out primarily in the additional barriers presented by the physical transportation arena. It may be more than environment. Because physical barriers coincidental that one of the first issues appear to be a "natural" part of the addressed by both African Americans and environment rather than existing because of overt oppression, and because removing people with disabilities seeking their civil them is perceived as costly, opponents have rights involved buses. Automobiles, espe- tended to focus on barrier removal as cially those with adaptive devices for people the excuse for maintaining the institutional, with disabilities, are expensive; moreover, [educational], and economic barriers. 79 not all people with disabilities are able to [But] I maintain that the only barrier drive. Varying greatly in size, rapid transit is an attitudinal barrier. If there were no attitudinal barriers, when we perceive a systems-subway, elevated, and commuter problem such as transportation, the two trains-were found in only ten localities in parties would sit down and work out a simple the United States in 2000.80 Buses, how- engineering solution. The fact that that does ever, requiring a modest fare, are the most not occur even when there is, indeed, a simple democratic form of public transportation. 70 CHAPTER FOUR They link people to employment, educa- of many people with disabilities to even tion, entertainment-all forms of social in- board buses until the late 1970s and the tercourse. 1980s was representative of their de facto In addition, the symbolic significance of segregation. The signing of the Section 504 buses for both African Americans and peo- regulations and the subsequent success of ple with disabilities should be noted. The re- the disability activists in many transporta- quirement in the late 1950s that Rosa Parks tion confrontations emboldened them to sit in the back of the bus was emblematic of work toward full participation of people her second-class legal status. The inability with disabilities in society. Chapter Five The Struggle for Change: In the Streets and in the Courts THE STRUGGLE FOR CIVIL rights for peo- based Justice For All (JFA) was sponsored by ple with disabilities took place with less a wealthy businessman with a disability who visibility than, but in the same venues as, was energized by an army of activists whom the battles fought by African Americans- he refers to as his mentors. Although most the streets and the courts. Demonstrations of the organizing, demonstrating, and liti- were held; lawsuits were filed; new organi- gating were triggered by desires to see new zations sprung up. While the names associ- laws passed and effective regulations issued ated with the disability rights movement- and implemented, accomplishing goals- leaders such as Judith E. Heumann, Patr- such as the signing of the Section 504 regu- isha Wright, Wade Blank, Michael Auberger, lations in I977 and the passage of the ADA in and Justin Dart, and attorneys like Sid- 1990-have not marked the end of the battle. ney Wolinsky and Stephen Gold-do not resonate in the same way as, for example, Medgar Evers and Thurgood Marshall, the Disabled In Action victories, large and small, of disability ac- tivists brought about a similar revolution. Conceived of as a New York citywide civil The organizations that led the way were rights organization committed to ending both local and national. Disabled In Action discrimination against people with all dis- began as a grass-roots organization in New abilities, Disabled In Action works to elimi- York City. Disability Rights Education and nate barriers that prevent the disability pop- Defense Fund was formed out of an inde- ulation from enjoying full equality. DIA was pendent living center in California. ADAPT, born out of the 1970 lawsuit, brought by Ju- which shifted its focus after attaining its dith E. Heumann-currently U.S. Assistant original goal, began in Denver. And D.C.- Secretary of Education and a quadriplegic 72 CHAPTER FIVE wheelchair user-against the New York City didn't see any relevance in my showing her Board of Education when her application how I went to the bathroom." Undaunted to obtain a teaching license was rejected by failing the board's medical examination, because of her disability. According to board Heumann appealed in the late 1960s to the policy, people with disabilities could not be American Civil Liberties Union (ACLU) to teachers because they were deemed fire haz- act on her behalf. Heumann recalls: ards. Nonetheless, Heumann decided in col- The ACLU said there was no reason for me lege that she wanted to major in education: to come down for an interview because it was "That was both a statement that I wanted to not a case of discrimination that they felt they work with children, and it was also a state- could win in court. It was purely a medical ment that in the New York City school sys- decision, and no judge was going to rule in tem with seventy thousand people working my favor on an issue like that. I remember in it, there were no disabled people who had those scenes so vividly; I remember trying to talk to this person on the phone between been accepted as teachers and were disabled crying. It was like saying, "You've got to let at the time they were certified."¹ me into your office; at least let me talk to you. Because Heumann took her oral, written, How can you tell me that I am such an invalid and medical examinations in buildings that person that you're not even going to let me sit were physically inaccessible, she had to be down and talk to you?" But at any rate, they carried up and down the stairs. Although did not let me sit down and talk to them, and she passed the oral and written portions, I dropped them. she failed the medical. Heumann recollects Still unintimidated, Heumann not only her experience when she took the board's publicized her struggle in the New York medical test for teachers: City press, but also continued pursuing her This woman and two other doctors (men) dispute with the board. Perhaps the most were in the room to examine me, so it was succinct headline appeared in the New York three to one. They asked me the most bizarre Daily News: "You Can Be President, Not questions. Then I told them I had not brought Teacher, with Polio."3 Two attorneys, having my crutches and braces, so they marked me read about her quarrel with the board in down as insubordinate. Then, out of the clear the local newspapers, offered to represent blue sky the woman said to the other doctors, her pro bono. One, formerly an attorney for "She wets her pants." That was such an insulting remark that I could not even react the Scottsboro boys, was a customer at the to it. I started to cry; again, I was so angry Heumann family butcher shop.4 Heumann that I did not know what else to do. Anyway, I explains, "I was fortunate enough to get failed the medical part of the exam, needless Constance Baker Motley as the judge on the to say. I wrote to ask the reason, and I got case, who was the first black woman judge the reason-one sentence: "paralysis of both appointed to the federal district court, and lower extremities, sequelae of poliomyelitis."2 she basically made it clear that she was going Heumann remembers her answer to one to keep the case and that it looked like she of the "bizarre questions"-concerning how was going to rule in our favor. So they settled she used the bathroom-that she was asked out of court." during her medical examination: "She [the Although no class action suit had been doctor] wanted me to show her how I went filed, the case established a precedent for to the bathroom, and I remember telling her other people with disabilities seeking certi- that unless it was going to be a requirement fication as public school teachers. Despite for me to teach elementary school children her success in court, Heumann still had how to go physically to the bathroom, I to contend with discrimination, before she THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 73 eventually acquired a teaching job, as well the university she attended-Long Island as with hostility while on the job: University (LIU) in Brooklyn, the spirit of the times, as well as LIU professor Theodore couldn't get a placement. Finally, I was placed Childs. Heumann describes her relation- in a school that I had been a student in, and that was a very interesting experience because ship with Childs: it really brought home to me the problems He [Ted Childs] is black, and he had been that were going on in special education very active in black political activities. I The goals of many of the special education would consider him, in a certain respect, to teachers were not the same goals that they be my mentor because he really put me in had for nondisabled children There was touch with a lot of discrimination issues-the a much lower expectation that disabled problems of the minority group he was part children, in fact, were going to be able to of, the problems he had encountered and the achieve. So, consequently, the quality of political activities with which he had been education was really substandard. Now, when involved. He was an inspiration to me. I went into the system-during my court battle, I had been getting a lot of publicity Heumann's conceptual breakthrough and had been speaking out a lot on the was that successful use of the media and problems-a number of teachers in the school had considered me rather a pariah because legal system by the civil rights movement of my statements about what I felt were the of the 1960s had potential pertinence to problems in special education. disability. Including discrimination against people with "physical handicaps" (referred Before Heumann, a great number of ca- to as "handicapism" or "ableism") in his cat- pable individuals with disabilities were dis- alogue of prejudices, Andrew Hacker has ob- couraged from the teaching profession by served, "Racism has much in common with the Board of Education's prohibition. The other 'isms." The observations of disabil- board's logic-which appeared irrefutable to ity advocate and Hofstra professor Frank many would-be educators with disabilities- Bowe, who is deaf, regarding prejudice are was that leading pupils out of a building applicable to race, ethnicity, and gender, as in case of fire was part of a teacher's job well as to disability: description. As a result, Heumann, like nu- merous applicants with disabilities before What we are aiming for, what the hope is all her, failed the medical portion of the re- about is to make people in this country quired examination. Rather than accept this see beyond that hearing aid, beyond that decision, however, Heumann responded by cane, beyond that guide dog, beyond those crutches or that wheelchair-to the person. aggressively challenging it, realizing that its That is something that most people cannot real purpose was to legitimatize discrim- do. They see the disability and they stop. It ination. She understood that a teacher's is very difficult for many people to perceive primary task is not to guide students in that a disabled person can contribute to the event of fire since others can provide limits that are defined by his or her abilities, this service. intelligence, or potential, rather than by his Relevant questions emerge from Heu- or her disability. But that is what we hope to do-get people to see beyond the disability.6 mann's experience. What made this pene- trating insight available to her at that partic- Because LIU was threatened with serious ular time? What allowed her to perceive the economic problems in the 1960s, school of- issues in a political context? Contributing ficials made its Brooklyn campus accessible to her incisive analysis was her supportive to people with disabilities in order to take family, the liberal political atmosphere of advantage of the potential enrollment that 74 CHAPTER FIVE this population provided. Soon the univer- Able; and through standard media sources. sity served as a propitious breeding ground DIA even has a singing group, the DIA to nurture disability activists, generated by Singers, encouraged by the venerable Pete their physical proximity in one educational Seeger and led by a gifted musician, Eric institution and an activist milieu. For the Levine-when he is not engaged in his other many mobility-impaired students attend- professional or political activities or on dial- ing LIU and living in the university's dor- ysis. The DIA Singers, who perform at the mitories, travel had been extremely limited Clearwater Folk Festival and other events in the inaccessible environment of the time. mainly in the New York Metropolitan area, The energy unleashed by the gathering to- have a repertoire that includes provocative gether in one place of a heretofore often dis- lyrics, such as the following: enfranchised group of people, coupled with the political upheaval of the 1960s, opened Oh yes, I am disabled, but I'm able to say this: "When you see me come, see a whole human up new possibilities. Heumann was inspired Not the parts that I might miss by, and fostered, the new militancy. The And I won't hide all my shortcomings publicity resulting from her lawsuit against If yours you'll also wear the New York City Board of Education, as For humanity, not ability, is the handicap we well as the hundreds of supportive letters share." she received, served as an impetus for her (From "Two Good Legs," words and music by founding Disabled In Action in 1970 at the singer-songwriter Patricia Shih)9 age of only twenty-two.⁷ To focus public attention on and gal- Encouraged by Ed Roberts, Heumann vanize support for significant issues, DIA moved from New York City to the more ac- plans and participates in public demonstra- cessible and politically-active Berkeley, Cal- tions. DIA demonstrated in Washington, ifornia, in September 1973. Nevertheless, D.C., joining other disability organizations DIA continued to establish its identity, de- from all over the nation, to gain passage veloping new leaders as well as increasing of the Rehabilitation Act of 1973. In 1976 and diversifying its membership. In order and 1977, DIA organized protests against to counteract traditional negative stereo- the United Cerebral Palsy telethon and, in types of people with disabilities, DIA initi- 1993 and 1994, against the Muscular Dys- ated consciousness-raising sessions, a prac- trophy Association-Jerry Lewis-telethon, tice borrowed from the women's movement. for their paternalistic and demeaning at- Recognizing its need, as a civil rights or- titude toward people with disabilities. In ganization, to publicize its mission to fos- the 1980s, DIA members blocked accessi- ter integration of individuals with disabil- ble New York City buses when wheelchair ities into the mainstream, DIA began us- users were refused access. In 1997, DIA ing advocacy methods it still employs. By joined in a national disability demonstra- testifying at public hearings-in addition tion against the Greyhound Bus Company to participating in public forums, confer- for its failure to provide wheelchair accessi- ences, and advisory committees-DIA ed- bility. From its inception, DIA has organized ucates not only government officials and protests at inaccessible business establish- leaders of established institutions, but also ments, post offices, other government of- the general public.⁸ fices, and polling sites, as well as demon- DIA achieves further outreach by means strated against federal, state, and city bud- of a quarterly newspaper, the DIA Activist; a get cuts to programs that are vital to the column in a monthly publication, New York disability population. THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 75 Although DIA has received grants from that all polling places have at least one government and private foundations, its vi- wheelchair-accessible entrance by 1990, vot- ability does not depend on such grants since ing sites were still inaccessible in the mid the organization relies on the efforts of the 1980s. With no effort being made by the members themselves. Operating without an administration of New York City Mayor Ed- office or paid staff, DIA has maintained this ward Koch to locate accessible sites or reno- luxury of independence by utilizing differ- vate inaccessible ones as late as June 1984, ent members' residences for various orga- DIA realized the law was being ignored. nizational activities. Taking its cue from Consequently, Brooklyn Legal Services filed Heumann, DIA plays the role of David to a New York State class action lawsuit on the Goliath of city, state, and federal govern- behalf of DIA of Metropolitan New York ment, as well as private businesses, large and and several individual plaintiffs, naming small. For example, DIA has won lawsuits the New York City and the New York State against the New York Metropolitan Trans- Boards of Elections as defendants. portation Authority, the New York City The experience of DIA member Betsy Board of Elections, and the Empire State Gimbel, a wheelchair user, demonstrated Building. Like many people with disabili- the effects of Koch's noncompliance with ties, most members of DIA are unemployed, the law. Arriving at her supposedly acces- living on government benefits. Hence, the sible polling site at 6:30 in the morning in organization is eligible to secure attorneys November 1985, Gimbel found that all three provided for people of limited means from entrances had flights of steps. Following the federally-funded Legal Services Corpo- instructions from the Board of Elections, ration. ¹⁰In addition, DIA has benefited from she traveled around the city the entire day, public interest law centers and the pro bono from Brooklyn to City Hall to the Board services of private law firms. Contrary to of Elections and back to Brooklyn. Finally, Philip K. Howard's contention in The Death she voted at 6:30 in the evening at a polling of Common Sense, 11 public interest lawyers are site less accessible than her own. Ironically, unlikely to accept frivolous lawsuits. These several years earlier, at a 1981 conference cel- lawyers are compensated by fixed salaries, ebrating the International Year of Disabled so their only incentive in the lawsuits they Persons (IYDP), Koch challenged the dis- pursue is success in winning noteworthy ability community to vote in great numbers cases. As a result, DIA wins most of its cases. in order to become as politically effective DIA's mission involves not only the pas- as the older community. In response, DIA sage of new laws that affirm and defend member Olga Hill asked the mayor if he the rights of people with disabilities, but knew that less than a third of polling sites, also the enforcement of existing legisla- 419 out of 1,337, were wheelchair accessible. 13 tion. Recognizing that without visibility Despite his apparent evasion of the New at voting booths people with disabilities York State Election Law, Koch gave DIA would never be perceived as a voting bloc, lawyers verbal assurances during the 1985 DIA demonstrated its tenacity in its ten- mayoral campaign that he would settle the year effort to ultimately win its wheelchair polling site lawsuit. Although the upstate accessible polling site lawsuit, Hill v. New New York Boards of Elections of Oneida York City Board of Elections, finally settled County and the City of Utica agreed to in 1994. 12 Despite the passage of a 1980 settle a similar lawsuit based on the same amendment-which DIA supported-to the election law, lawyers representing Mayor New York State Election Law, requiring Koch would not sign a settlement agree- 76 CHAPTER FIVE ment. Since Koch had reneged on his prom- civil rights of people with disabilities, DIA ise to the DIA lawyers, Jane Greengold sought attorneys from legal services agen- Stevens-the lead attorney representing the cies to litigate disability rights cases. Having plaintiffs-announced that she was going emerged from Heumann's successful law- to proceed with the suit within the month. suit against the New York City Board of Ed- In 1986, Judge Herbert Kramer ruled in fa- ucation, DIA considered litigation as one of vor of the plaintiffs, but the city continued the most effective ways of implementing so- to procrastinate until Stevens, on behalf cial change. When Brooklyn Legal Services of DIA and the individual litigants, filed attorney Jane Greengold Stevens served as a contempt motion in 1988. Judge Kramer, principal lawyer in both Dopico and Hill, who took an active interest in the case, re- she sought legal assistance from NYLPI. In quired that many polling sites be barrier- the transportation suit, she called upon the free by 1990. Nonetheless, the lawsuit was pro bono services of a private law firm- not settled until December 1994 when only Winthrop, Stimson, Putnam & Roberts, a five voting locations were still inaccessible. member of NYLPI-while in the polling site Furthermore, in order to ensure that case, she worked with an attorney from voting places would remain available to NYLPI, Herbert Semmel. people with disabilities and older citizens, Forming a central plank in the Office "The City Board of Elections [was] enjoined of Economic Opportunity national war on from relocating polling sites to nonacces- poverty, legal services programs funded by sible sites without prior written permis- the federal government began their steady sion of the court and after a statutory fair decline in the 1970s. Furthermore, during hearing by the Board of Elections.' Judge this period of retrenchment even private Kramer was especially concerned with the foundations began to withdraw support for issue of whether distance or steps was the public interest law. Although racial equality main barrier for older voters with disabili- and economic opportunity (not disability ties. As a result of the intervention of Legal rights) was considered the crucial issue in Services for the Elderly, the court was con- the late 1970s, the fact that so many people vinced that the primary hindrance for voters with disabilities were living below the pov- with disabilities regardless of age was steps. erty level made this population eligible for This experience revealed the natural politi- public interest legal services. A March 1976 cal affinity between people with disabilities Ford Foundation report observed, "If public and older people, since their interests fre- interest practice is to remain and grow, it quently intersect. must be seen as an enlargement of the scope and responsibility of the legal profession."16 Combining the pro bono activities of New York Lawyers for the major law firms and corporate law depart- Public Interest ments with a public interest law office, NYLPI was established in January 1976 to In two pivotal DIA cases, the 1982 Dopico v. provide private legal support for poor and Goldschmidt transportation lawsuit¹⁵ and the under-represented communities, including Hill v. New York City Board of Elections polling the disability population. 17 Private law firms site lawsuit, New York Lawyers for the Public and corporate law departments become Interest (NYLPI) played a vital role. Appre- members of NYLPI both by volunteering ciating the limits of testifying at govern- their expertise and by financially supporting ment hearings and demonstrating for the pro bono projects. As a reaction to contin- THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 77 uing cutbacks in legal services programs, Section 504 were signed. HPLSU was ter- membership in NYLPI has increased from minated within three years as other Legal the original nine participants in 1976 to Services Corporation offices became acces- seventy-eight in 1999. 18 Once a body of laws sible. Over time, some Legal Services Cor- and legal precedents had been established poration offices became barrier-free while regarding civil rights for people with dis- others moved to wheelchair-accessible sites. abilities, NYLPI founded the Disability Law Hearne's recognition of the insensitivity to Center in 1991 within its public interest disability issues of even these "defenders law office. of justice," as he ironically referred to his legal colleagues, clarified his own purpose: to play a part in the expansion of civil rights Recognizing Disability as a for people with disabilities. Hearne's expe- Civil Rights Issue rience, similar to the experiences of many other people with disabilities, reveals that Founder in 1977 of an early disability law even well-informed and politically sophis- center known as the Handicapped Persons ticated people often do not appreciate the Legal Support Unit (HPLSU), Paul Hearne relationship between disability rights and made disability litigation his mission until other forms of civil rights. his untimely death on May 3, 1998, at the age of forty-eight.19 Hearne, a severely disabled wheelchair user, described an incident that Disability Rights Education and caused him to work in disability law: "I had Defense Fund originally planned to work in poverty law, but I discovered I was a person with a dis- The leaders of the Berkeley Center for ability that had a political dimension and Independent Living founded the Disabil- that became my life's work." In 1976, when ity Rights Education and Defense Fund an office of the Legal Services Corporation, (DREDF) in 1979 after receiving a one hun- Hearne's employer for two years, relocated dred thousand dollar federal grant. Because to a new office up two flights of stairs, the New York City's Legal Services Corporation civil rights lawyers Hearne worked along- lost a portion of its federal funding as a con- side and admired showed no awareness of sequence of its noncompliance with Section his needs. Forced to acknowledge Hearne's 504, this same one hundred thousand dol- access problem, the Legal Services attorneys lars was transferred to the Berkeley Center.20 maintained that Section 504, prohibiting DREDF's mission is to promote the inte- disability discrimination by recipients of gration and civil rights of people with dis- federal funds, did not apply to this federally- abilities, and "to establish disability rights funded government agency. They argued as the recognized equivalent of race and that since the Legal Services Corporation gender-based civil rights."2 Led by people was not a recipient of a federal grant, but with disabilities and the parents of children rather an agency of the government, the with disabilities, DREDF is a national law corporation was exempt from Section 504. and policy center with offices in Berkeley, Nonetheless, under the auspices of New California, and Washington, D.C. York Senator Jacob Javits, the Legal Services Besides continuing to receive government Corporation established a fully accessible grants and contracts, DREDF-a nonprofit office, HPLSU, with Hearne as director in organization-also secures financial sup- May 1977, a month after the regulations for port from foundations and corporations, 78 CHAPTER FIVE as well as attorneys' fees resulting from vide training sessions not only for parents successful disability litigation.²² Because of of children with disabilities but also for DREDF's involvement with disability issues adults with disabilities to monitor compli- on a grass-roots level, the organization has ance with disability legislation. been a key player since its inception in draft- In order to foster integration of adults ing, negotiating, and passing major federal as well as children with disabilities into the disability civil rights legislation such as the mainstream, DREDF litigates cases enforc- Americans with Disabilities Act. For exam- ing access to housing, transportation, bene- ple, in 1981 when the Reagan administration fits, education, employment, and public ac- attempted to weaken the regulations im- commodation of the disability population. plementing Section 504, the White House DREDF also serves as a resource for infor- received forty thousand letters as a result of mation, referral, and technical assistance on a nationwide DREDF alert. disability rights laws and policies. Through DREDF offered leadership in educating the Disability Clinical Legal Education Pro- Congress before the passage of two major gram, DREDF, along with a consortium of national laws, the Fair Housing Amend- five law schools, trains law students by offer- ments Act of 1988 and the Handicapped ing a course in disability rights law, as well Children's Protection Act of 1986. The for- as a clinic for students to work on DREDF mer law renders housing discrimination cases.²⁴ A DREDF leader, Patrisha Wright, against people with disabilities a federal of- who played a prominent role in rewriting fense. The second law provides that gov- the ADA so that it would gain broad legisla- ernment or business defendants who lose tive acceptance, reflects on the ADA: "You lawsuits pay attorney's fees to plaintiffs in can't legislate attitudes. But you can level special education or disability discrimina- the playing field, and that's what the ADA tion cases related to the Individuals with is all about. It signifies the end of second- Disabilities Education Act. Although gen- class citizenship for people with disabilities erally plaintiffs pay their own lawyers' fees, in this country."25 Congress deemed the Handicapped Chil- One of DREDF's most notable achieve- dren's Protection Act necessary in order to ments was its role in the 1988 Civil Rights offer parents, regardless of their income, Restoration Act, which in effect overturned a means of protecting their children with the U.S. Supreme Court's 1984 Grove City disabilities from the potential bias of edu- v. Bell decision.² According to Grove City, cational institutions. if a court ruled against any division of an Committing one-third of its services to institution in a civil rights lawsuit, only that issues concerning the education of children particular division, not the entire institu- with disabilities, DREDF pursues cases in tion, was required to comply with Section which parents participate in planning their 504. Besides prejudice based on race, na- child's individualized educational plan tional origin, sex, and age, the Grove City (IEP).²³ In fact, DREDF encourages par- ruling applied to bias on account of disabil- ents, as advocates for their children with ity. In order to urge Congress to overturn disabilities, to secure all the educational Grove City by passing the 1988 Civil Rights and related services mandated by state and Restoration Act, DREDF provided materi- federal laws. Grants and contracts received als and information to, and testified before, from the U.S. Department of Education congressional committees. Once the act was and the Equal Employment Opportunity passed, it was applied to civil rights leg- Commission (EEOC) enable DREDF to pro- islation enacted since 1964, thus restoring THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 79 those laws to the original intent. Before the In the late 1970S, he averted the disper- passage of the 1988 Civil Rights Restoration sal of roughly I50 people with Hanson's Act, DREDF brought the issues of people disease, more commonly known as leprosy, with disabilities to the rest of the civil rights who lived together in a community on the community by its "rigorous participation" Hawaiian island of Molokai. Because their in the ongoing Leadership Conference on disease was contagious before the availabil- Civil Rights, organized in 1980 to unite ity in the early I970S of a category of drugs leaders from the various civil rights move- known as sulphones,30 these individuals- ments. Thus, DREDF was instrumental in who had been ripped from their families- presenting disability discrimination as akin had established an emotional attachment to racial, ethnic, and gender discrimination. to one another and their home. When land developers realized the value of the prop- erty on which these people with Hanson's The Need for Disability Rights disease lived, their community was jeopar- Attorneys dized. The dispute was tied up in litiga- tion sufficiently long, however, so that the Because of a continuing increase in lo- issue ultimately was settled by federal leg- cal, state, and federal disability legislation- islation decreeing the area on which this especially since Section 504 of the Reha- community resided a national preserve un- bilitation Act of 1973, the 1975 Individuals der Federal Park supervision. Once there are with Disabilities Education Act, and the no Hanson's disease survivors left on the 1990 ADA-the need for attorneys special- property, the area will become a permanent izing in disability law has expanded consid- memorial, a testament to the experience en- erably. Impressed by the activist approach dured by those who had this condition. toward civil rights for people with disabil- During the late 1980s and early 1990s, ities of Berkeley's Center for Independent Wolinsky dealt with a number of significant Living (especially evident in the charismatic architectural barrier cases. In an attempt leadership of its director, Ed Roberts), one to save about fifteen thousand dollars, the prominent lawyer, Sidney Wolinsky, chose owner of Specialty Restaurant failed to to become a disability rights attorney in make the entrance accessible when the es- the mid-1970s.²⁸ Wolinsky, now director of tablishment was undergoing major remod- Litigation of Disability Rights Advocates eling. As a consequence of the 1989 law- of Oakland, California, described his first suit Weissman v. Specialty, based on Califor- major disability lawsuit, the mid-1970s Post nia state law, an Alameda County Superior Street, San Francisco, nursing home case Court jury awarded the plaintiff $670,000, (Bracco v. Lackner).²⁹ This successful litiga- perhaps the largest verdict for a single in- tion prevented the residents of the nursing dividual ever in an architectural barrier de- home, older people with disabilities, from cision. Before his successful ADA class ac- being forcibly transferred from one facility tion lawsuit representing DREDF against to another. To win his case, he used the United Artists Theatres for its lack of ac- concept of "transfer trauma," the probabil- cessibility, Arnold v. United Artists Theatre Cir- ity that his frail elderly clients would suffer cuit (1996), Wolinsky won a landmark pre- serious injuries if they were moved against ADA judgment in an architectural barrier their will. Originally specializing in elder lawsuit, Henry v. Squaw Valley Ski Resort. The law and problems of older people, Wolinsky court decided in favor of the plaintiffs be- increasingly focused on disability law. cause the resort neither allowed wheelchair 80 CHAPTER FIVE users on lifts nor provided accessibility on disability law to the suits he has recently the mountain. litigated. Many of his early cases involved Wolinsky also discusses his lawsuits deal- airline carrier access, "a primitive pre-ADA ing with psychiatric and learning disabili- law," according to the attorney, "that did ties (LDs). He is especially pleased with a de- not offer much protection." By the late cision in a 1993 case (Putnam v. Pacific Gas and 1990s, he noticed that he had been seeing Electric) he brought involving a lawyer with many fewer of these cases. In order to a psychiatric disability-major depression- get appropriate settlements in his early who worked for Pacific Gas and Electric. architectural barrier cases, he would have "These kinds of cases are not being won. to go to trial. "The good news is now They either get thrown out of court before defendants know how difficult it is to justify they get to trial or receive a small recov- steps, and they also know," he observes, "we ery," Wolinsky observes. Yet, after Wolin- get better settlements." Still, he emphasizes sky's client, who was working under "a the significance of geographical areas: harsh supervisor," was refused an ADA ac- commodation and then fired, an arbiter If we get enough architectural barrier cases in awarded the plaintiff $1.1 million. Wolinsky a particular area, soon building departments followed his victory in a much publicized in that locality begin to get educated, and we don't have to bring lawsuits. Because class action lawsuit against Boston Univer- people with disabilities in Oakland are aware sity, Elizabeth Guckenberger v. Boston Univer- of their rights, I can't remember the last sity (1997), for its systemic refusal to accom- time I had to bring a lawsuit in Oakland. modate students with learning disabilities, The Oakland Building Department has with a similar class action lawsuit against become knowledgeable about and sensitive to the California Bar Association for failing to access issues. But the bad news is that forty- provide accommodation for students with five minutes north in the Napa Valley, the Building Department doesn't get it yet. From learning disabilities. "Although it had been my experience sometimes the periphery of the previously good, the Bar had decided in its country is the slowest to get it. Consider, for great wisdom in 1997 to crack down on LD example, Hawaii and south Floridà. And the students," Wolinsky notes sarcastically: point is that it doesn't seem to relate to need. There are lots of elderly and lots of people We started receiving floods of complaints with disabilities in south Florida. Still there from candidates taking the bar exams, whose aren't enough activist organizations in some LD accommodations were dramatically cut or areas, so people are timid; they don't know turned down totally. This California Bar case, the law, and they don't assert their rights. that's still in litigation, is a sign of what's happening and what's to come. Fifteen years Wolinsky acknowledges that his cases are ago, if you were seriously dyslexic, you were getting "more difficult" as the other side has going to end up a janitor even if you had an I:Q. of 150. Now a considerable number of gotten increasingly sophisticated. "They're people with learning disabilities are going cleverer at job discrimination now. They to college, and so you get cases like Boston don't say we're not hiring you because you're University. And some, who self-identify as LD, disabled; they say they've found somebody have even worked further along the system more qualified." Also, he remembers that to law school, so we have the California Bar in the past his cases revolved around "core case (Mueller v. Committee of Bar Examiners of issues" while now he has moved into "some- the State of California). what fuzzier territory." He explains, "No- Wolinsky compares the kinds of cases body now refuses to settle cases with us he dealt with when he began practicing about inaccessible front entrances, but they THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 8I argue about width of aisles in stores and cases may not be very helpful. We'll bring their right to crowd aisles with display the suits and hope we can settle them if not racks." He is referring to the Disability win them," he says. While he asserts that Rights Advocates lawsuit against Federated future cases will clarify the interpretation Department Stores, which includes Macy's of terminology relating to disability law, he and Bloomingdale's. emphasizes the importance of the growing Another issue with which Wolinsky has degree to which people with disabilities are become recently involved concerns insur- becoming cognizant of "what they are enti- ance for people with disabilities. "Insurance tled to." companies routinely turn down people with Another major litigator, a private Phila- disabilities or charge them premiums that delphia attorney, Stephen Gold, recollects are too high," he contends. He describes that about 50 percent of his caseload prior a summary judgment that he won against to 1992 involved disability litigation. With United of Omaha (Chabner v. United of Om- the passage of the ADA, however, he was aha), which charged double the normal pre- able to make a decent salary practicing only mium to a person because he was in a disability law. Gold states, "I have no interest wheelchair: "We sued and sure enough they in pursuing bad disability lawsuits. We had had no hard evidence to go on to justify too many bad ones following Section 504, their unreasonable premium. They were just and that does not serve the cause of disabil- stereotyping. They figured, 'Oh well, he's in ity rights. Also, of course, I am only entitled a chair; he's not going to live too long; we'll to attorney's fees when my plaintiffs pre- charge twice the regular rate." Wolinsky vail; when I lose, I get no money. But I get regrets that because of their history and more winning cases than I can handle. So we their isolation from the rest of the disability need more good disability lawyers.' James community, deaf people have neither taken Raggio, general counsel to the Access Board, advantage of the laws that could serve them agrees with Gold: "There are not enough nor developed an adequate number of attor- resources for the meaningful ADA lawsuits neys from their own community. "Although that should be litigated." someone on our staff is hard of hearing," Gold describes how, quite by accident, he Wolinsky indicates, "there are not enough became a disability rights attorney: good deaf lawyers. In my view there are a lot more cases to be brought than have been In the late 1980s, I was asked to litigate brought. There don't seem to be a sufficient a case for a school bus driver who wore a number of hard-hitting advocacy firms that hearing aid. Soon after I won this suit in focus on the deaf community." Wolinsky the Third Circuit using Section 504, I won is especially concerned about the lack of another disability employment case that was based on a myth that perpetuates sign language interpreters in public facili- disability discrimination. Several blind ties such as hospitals, courts, and schools. people working in the Social Security As he prepares for new disability cases, Administration, who were providing he reveals how much he would like to see information by telephone, were refused a people who are deaf and hard of hearing be- promotion to a job that required them to come more aggressive than they have been furnish the same information in person. The in pursuing their legitimate rights. Looking supervisor was concerned that clients would not have confidence in information given by forward to a continuation of lawsuits in the blind people. employment context, Wolinsky anticipates Another disability case that I won in that "they will get so fact-specific that prior the Third Circuit led to several wheelchair- 82 CHAPTER FIVE accessible subway and elevator train stations as a more attainable objective than personal in Philadelphia. When I noticed that the assistance services. With the 1990 passage of newly-renovated subway station, which I the ADA, ADAPT had made much progress used to get to the Temple University Law toward its first goal, accessible public tran- School course that I was teaching, did not have an elevator, I brought a Section 504 sit, so the organization moved on to its lawsuit. Also, I had the good fortune by current and principal concern: community- 1990 to co-counsel disability cases with Tim based personal assistance services. Emerg- Cook, a highly-respected disabled disability ing out of Wade Blank's relocation of six- lawyer who died young, at the peak of teen adults with severe disabilities from his career. a nursing home into apartments in 1975, ADAPT, from its inception, focused on in- Although Gold refers to himself as merely dependent living. Blank, founder of ADAPT, "playing second fiddle" to Tim Cook in describes how his recruitment by the nurs- ADAPT's significant 1989 Section 504 trans- ing home industry in 1971 introduced him portation federal lawsuit, ADAPT v. Skinner, to radical disability politics: now Gold is known as the ADAPT lawyer. The nursing home industry in Denver Commenting on ADAPT's mission, Gold recruited its nursing home administrators maintains that it is important for disabil- from the ranks of ex-ministers [like me]. The ity activists to keep the pressing disabil- industry had built too many nursing homes in ity issues-vital to such a surprisingly high Denver. There weren't enough old people, and percentage of Americans-in the eye of the the state institutions were dumping disabled public and the lawmakers. people out, so the nursing home industry decided they would get them. A nursing home executive called. He said, "You're young. You're hip. Could you start a youth ADAPT wing for us?" So I started a youth wing. I had sixty young people recruited They Despite the fact that ADAPT has been the wanted coed living. They wanted to have pets. plaintiff in successful disability lawsuits, They wanted to have rock 'n' roll bands. So the organization-according to one of its three years into this experiment, this nursing leaders, Michael Auberger-stresses "the tac- home is just like a college dorm on a crazy weekend all the time We [moved] a few tics of street fighters."33 A student of the of them out into apartments [in 1975], and 1960s and 1970s civil rights and antiwar we let the aides and orderlies punch in at movements, Auberger refers to the nonau- the nursing home, then go to the apartment thoritarian structure of ADAPT as it es- and give them service. The nursing home saw chews incorporation, officers, and board de- where I was going and they couldn't let me go in that direction.³⁴ velopment, relying instead upon leadership and consensus. The acronym "ADAPT" has Because of his "experiment," Blank was had two different meanings: from June 1983 fired; the nursing home-removing all to August 1990, it meant American Disabled stereos, televisions, and animals-wiped out for Accessible Public Transit; since August all of the improvements that he imple- 1990, it has stood for American Disabled for mented over a period of four years. Not fully Attendant Programs Today. cognizant of the enormous responsibility When ADAPT in its early phase, 1983 to he was undertaking, Blank decided to be- 1990, required a victory to become a credible gin to move his young recruits out of "this force in the disability rights struggle, the or- hell" and care for them himself: "You think ganization chose accessible transportation marriage is a serious commitment; you try THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 83 moving eight people who are severely dis- the U.S. Court of Appeals for the District abled out into their own apartments and of Columbia decided in favor of the Amer- be responsible for dressing them, feeding ican Public Transit Association in its law- them, bowel programs, bathing them. But suit against the U.S. Department of Trans- within the first six months, I'd moved eigh- portation concerning the Section 504 regu- teen severely disabled people out, so now I lations,³ the Denver Transit Authority-like was wed to the concept. You know, I couldn't many transit authorities across the nation- walk away from it." considered the decision a signal to cease Pointing out that Section 504 and the efforts to make public transportation ac- ADA do not prevent people with disabili- cessible. In order to advance the cause of ties from being locked up in institutions, accessible public transit, ADAPT protested Blank notes the limitations of what he against APTA at its regional conferences in considers the social and economic elitism localities throughout the country. ADAPT of the mainstream disability movement: positioned itself as the courageous "en- "The Ed Robertses and the Judy Heumanns fant terrible" facing the bully-APTA-or, in don't deal with nursing homes. They've Auberger's words, "the bad guy." ADAPT never been in one. They don't understand used nationwide demonstrations to rally them. You go around to the indepen- the disability community in these localities dent living centers, and you'll see a lot to fight for buses with lifts. of post-polios and a lot of spinal cord Auberger argues, "We don't appear to injuries. But you won't see a lot of peo- public opinion to be reasonable, but we ple who slobber and can't speak clearly are."37 ADAPT's effort to get businesses to like you do here [Atlantis and ADAPT]." install ramps, as required by the ADA, be- Learning how to challenge authority from gins with letter writing, followed by demon- his successful efforts in the 1960s civil strations, and lawsuits only as a last resort. rights movement, Blank encouraged peo- "It's a hell of a lot easier to do it in a meet- ple with severe disabilities to achieve their ing. It takes a hell of a lot of energy to goals using confrontational tactics. By 1980, do the demonstrations, to do the lawsuits," funded by the U.S. Rehabilitation Services Auberger observes. "We'll do that if that's Administration, the Atlantis Community, what it takes. But my preference is, let's do with I20 clients-including Blank's former it nice and resolve it as amicably as possible." nursing home recruits-had become an in- When the contractor and owner of an dependent living center providing hous- elegant Denver restaurant violated city ac- ing and home health services. Auberger cessibility laws, the ADAPT protest demon- describes Blank, who died on February strated its usual flamboyance and wit. Set- I5, 1993, while attempting to rescue his ting up tables in front of the restaurant eight-year-old son from drowning, as "a where they ate cans of Chef Boy Ardee and teacher, inspiring left-out people, people drank cheap wine, ADAPT members dis- with significant disabilities, to advocate for played a sign that read "accessible seating." themselves."35 Although ADAPT sometimes acts locally Although ADAPT was officially estab- pursuing disability activities in Denver, with lished in Denver in June 1983 by Blank its existing affiliate network throughout the and the Atlantis Community, the success- country, it always thinks nationally. ful Denver 1982 demonstration for lift- Transferring this successful strategy to equipped buses propelled these disability the personal assistance services issue, advocates toward activism. In 1981, when ADAPT, in its second incarnation since 84 CHAPTER FIVE 1990, identifies the $90 billion per year Missouri, to demonstrate that "elderly peo- nursing home industry, represented by the ple and younger people with disabilities can American Health Care Association (AHCA), live in the community more economically, as "the bad guy." Continuing to use con- more productively, and more happily than frontational techniques, ADAPT surround- in nursing homes." ADAPT has been urg- ed buildings such as the Chicago regional ing that 25 percent of federal nursing home office of the Department of Health and Hu- dollars be redirected to a national attendant man Services, the American Medical Asso- services program to be available, as a basic ciation (AMA) National Headquarters, and civil right, to anyone needing such services. the San Francisco convention site of AHCA. Auberger contends that "this issue strikes a In each case, ADAPT, declaring the location responsive chord in most Americans since a nursing home, required that people receive they fear aging and ending up in a nurs- ADAPT's permission to leave or enter the ing home." premises. Thus, these people were given a In the summer of 1997, ADAPT focused taste of the nursing home life against which on both the nursing home issue-Medicaid ADAPT was protesting. Community Attendant Services Act A 1992 ADAPT flyer succinctly expressed (MiCasa)-and transportation-the Grey- the organization's position on nursing hound controversy. As a result of occupying homes: the office of then Speaker of the House Newt Gingrich on several occasions from Q. & A. 1995 to 1997, ADAPT pressured Gingrich to Q. What's the difference between a introduce the MiCasa bill. 39 Instead of being nursing home and a jail? sent to nursing homes, people under Mi- A. The uniforms are different. The Casa would be permitted to remain in their weapons are different, in jail it's a own homes with attendant services. "On gun, in a nursing home it's pills. the eve of the last election [1996], Gingrich had promised, in a hand-written agreement The parole is different. In jail, you with ADAPT, to 'seek final passage and serve your sentence and get paroled. enactment [of MiCasa] into law prior to In nursing homes there's no parole. You're in for life! the end of the first session of the 105th Congress."40 When Gingrich commented Referring to the nursing home industry in a June 5, 1997, conference with ADAPT as "a beast that nobody likes," Auberger that "you know the institutional providers indicates that government agencies and [nursing homes] are going to go berserk," health maintenance organizations both re- Auberger responded, "We're willing to take alize that it is cheaper to provide services for on the fight with them." people with disabilities in the community In addition to its efforts regarding Mi- than in nursing homes.³⁸ Many people are Casa, on August 8, 1997, ADAPT organized in nursing homes, Auberger continues, be- about forty demonstrations throughout cause there is no support system available the nation protesting the refusal of Grey- for them to live in their own homes; were hound to provide wheelchair accessibility they given a choice, however, "more and on its buses. The New York City protesters more would move out." Auberger's solution chanted, "At least Rosa Parks could get on is to create models, such as those in Col- the bus'-a reference to the Alabama woman orado, Kansas, Vermont, and more recently whose refusal to sit in the back of the THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 85 bus sparked the civil rights movement."⁴¹ with cerebral palsy-as spokespeople. As a A member of the New York City contin- result, listeners who are intent upon get- gent, Thomas K. Small, observed, "Buses ting the message are forced to concentrate are widely used by the disabled because on the content of the speech regardless they are cheaper than trains and planes, of the speaker's clarity of diction. Despite and 75 percent of people with disabilities in some disability activist's discomfort with the United States have low incomes." Phil- ADAPT when it flaunts old images of dis- adelphia disability rights attorney, Stephen ability, the organization, as Auberger puts Gold, added: it, "is willing to take flak for its actions Greyhound has already bought eighty or since it works for people with the least ninety inaccessible buses. For many people, in who need the most and intend to get what many parts of the country, these buses provide they want."43 the only means of inexpensive long-distance Auberger draws a parallel between the transportation. If the company's allowed American Revolution and the "Disability to go ahead with their plan to purchase Revolution." He likens the ineffective enti- another two hundred of those buses, it will be ties in the system, such as APTA and the twenty-five years before people in wheelchairs will be able to ride Greyhound buses. This nursing home industry, to the powerful is clearly discrimination in violation of the British army, the Redcoats, who did not ADA. Technology for accessible over-the-road know how to fight in the new environment. buses-with storage space for luggage- Comparing ADAPT members to the army such as Greyhound buses, is available as of the American Revolution, he calls them demonstrated by the accessible Canadian "guerrilla fighters taking shots at the system buses of this type.42 where it's vulnerable." Auberger explains, In 1999 the Department of Justice reached "The stuff ADAPT does in the streets makes an out-of-court settlement with Greyhound Justin Dart, who works through the system, in which the bus company agreed to phase seem sane when he talks about our rights in in lift-equipped buses over the following the halls of Congress." two years. Whether ADAPT members are sliding out of their wheelchairs to crawl up the Justice For All steps of the Capitol as Congress deliber- ates over the 1990 ADA, or disrupting the Founded in 1995 by Justin and Yoshiko Dart, speech of President Bush's Health and Hu- Becky Ogle, Fred Fay, and Mark Smith, Jus- man Services Secretary, Louis Sullivan, at tice For All adopted a platform, Solidarity the 1992 University of Illinois graduation 2000, committed to establishing a consen- ceremony, they employ theatrical maneu- sus in the disability community on the ma- vers though their purposes are utterly se- jor disability rights issues.4 By means of rious. ADAPT considers its confrontational action alerts, information updates, meet- tactics most successful when police are so ings, and conference calls, JFA created a provoked that they are placed in the embar- nationwide disability rights network. Con- rassing position of arresting these ADAPT sidering listening crucial to building con- demonstrators with severe disabilities. Rep- sensus, Justin Dart, post-polio wheelchair resenting many people with serious dis- user, toured all fifty states in 1996 in or- abilities, ADAPT sometimes uses members der to consult with disability groups in with speech problems-such as individuals each state. 86 CHAPTER FIVE Dart, who contracted polio in 1948 at telecommunication network chair, commu- the age of eighteen, was born into wealth nicating with disability leaders nationwide and the corporate life. However, an expe- while monitoring the latest events by means rience at a 1966 media event at a Saigon of the Internet. facility for children with polio changed Fay describes his work: "When I first his life: realized I'd be in bed for the rest of my The floor of the place was covered with life, I thought, 'Wow. I'm going to get children ages four to ten, with bloated awfully bored reading books.' But I con- stomachs and matchstick limbs. They were tinued my advocacy work, thanks to the starving to death and lying in their own phone, fax, and modem." Lying flat on urine and feces. A little girl reached up to his back in the motorized wheelbed that me and looked into my eyes. I automatically he designed, Fay uses a joystick to drive took her hand and my photographer took pictures. She had the most serene look I have up "to a customized electronic work station ever seen-and it penetrated to the deepest [in his home] and reads material displayed part of my consciousness. I thought, here on either of two computer monitors resting is a person almost dead, and she knows it. on pull-out glass shelves suspended a foot She's reaching out for God and has found a from his head."48 Using this technology, counterfeit saint doing a photo op I told Fay says, "I conduct meetings [by means of [my fiancée] Yoshiko, "We cannot go on as video conferencing], write articles, we have been. Our lives have got to mean lobby something. We have got to get into this fight Congress, execute grass-roots campaigns, and stop this evil. "45 and reach thousands of people with disabil- ities every day." After cofounding an independent living While Fay was winner of the 1997 Betts center in Texas in 1978-holding five guber- Award for outstanding contributions to natorial, one congressional, and five presi- people with disabilities, Dart was a recipient dential appointments associated with dis- of a 1998 Presidential Medal of Freedom, ability policy-as well as helping to shape America's highest civilian honor. In accept- the ADA, Dart used his own funds to sup- ing the award, Dart thanked members of port JFA, "a communication base for grass- the disability rights movement by saying, roots organizers and a lobbying force in "This is your medal. I am so proud to be Washington." one of you. I will fight at your side until Dart's wife, Yoshiko, her three foster the last breath. "49 Dart has always credited daughters, and a small band of other vol- those who preceded him and those who unteers throughout the nation perform the have joined him in the movement with edu- day-to-day tasks of the organization. Con- cating and energizing him: "I think of Ed gressional and White House watchdog and Roberts dreaming up a revolution of in- wheelchair user Becky Ogle attends numer- dependence in his iron lung, and I think ous meetings enabling her to report "up- of many others on my list of empowering to-the-minute information to the JFA head- people." In 1995, when the 104th Congress quarters at the Dart home."⁴⁶ Organizing threatened to roll back existing federal leg- conference calls, mailings, and meetings, islation (such as ADA and the Individuals Mark Smith coordinates the JFA network, with Disabilities Education Act) providing known as the Truth Team, from the orga- opportunities to people with disabilities, nization's Mississippi office. Fred Fay, who Justin Dart recognized the need for a na- has been in bed since 1981 with a progres- tional, unified voice of the disability com- sive disability (a spinal cord cyst), is JFA's munity: THE STRUGGLE FOR CHANGE: IN THE STREETS AND IN THE COURTS 87 The war for the survival of the disability rights from government contracts and other movement had begun. Our independence and limitations. Empowerment is the issue rights were being debated in Congress. of the age. Nobody is going to give it to We [JFA] realized that we would have us [the disability community]. We have to to do some hard-hitting advocacy. We empower ourselves.⁵⁰ needed to be an independent entity, free Chapter Six The Americans with Disabilities Act AT AN APRIL 18, 1997, conference of dis- Lex Frieden, the first permanent executive ability advocates in Uniondale, New York, director of the National Council on Dis- Joseph Shapiro, author of No Pity: People ability³-an independent federal agency ap- with Disabilities Forging a New Civil Rights pointed by the president-who served from Movement,1 indicated that because the ADA December 1984 to April 1988, indicates that, had so much support, its passage was not in a sense, both Dart and Shapiro were right: a daunting task. In a meeting with New York City disability rights advocates on the But Shapiro's focus may have been too following day, Justin Dart, who has been narrow; he didn't open up his lens. He was just taking a snapshot. He was concentrating called the "father of the ADA," disagreed, on a specific point in time-once the bill pointing to the concerted effort to prevent was before Congress, while Dart participated the passage of, or weaken, the ADA by such in the years of hard work, the struggle that powerful forces as, for example, the five paved the way for the passage of the ADA. hundred thousand-member National Fed- An Olympic gold medal swimmer makes eration of Independent Business.² Having getting from one end of the pool to the other given top priority to defeating the ADA, look easy. What you don't see is the years of preparation and sweat that were necessary for National Federation of Independent Busi- success.4 ness was the subject of a Washington Post front-page article entitled "The Organiza- Dart's work on legislation that culmi- tion That Never Loses." In addition, the nated in the ADA had begun in the early U.S. Chamber of Commerce, the New York 1980s when he was chair of Texas Governor Times, the Wall Street Journal, the Restau- William Clements's Task Force for Long- rant Association, Greyhound Buses, and Range Policy for People with Disabilities.⁵ the entire public transportation commu- Dart points out that disability rights advo- nity, as well as conservative elements of cates recognized that the very real threat of the Republican party represented by peo- weakening the provisions of the ADA, in ef- ple like Pat Buchanan and Representative fect creating legislation legitimizing the seg- Dick Armey (R-Tex.), joined in opposition regation of people with disabilities, would to the ADA. be worse than no law at all: THE AMERICANS WITH DISABILITIES ACT 89 If you don't have a watered-down ADA law, with Disabilities" in 1982.9 Maintaining a the Bill of Rights and civil rights laws apply unity of purpose with the former members to you. But you can be exempt from these of the council, vice-chair Dart conferred laws if you have a Jim Crow law called a civil rights law. The ADA advocates participating frequently with the Carter appointees. In in framing the legislation were willing to be fact, he refers to Heumann, a woman about flexible with regard to time limits, remedies, twenty years his junior, as his mentor. and undue hardship. However, they were One of the NCD's recommendations determined to prevent permanent exemption approved by President Reagan was that of coverage from any group of people with "Congress should act forthwith to include disabilities, such as people with AIDS or persons with disabilities in the Civil Rights psychological disabilities, or any separate but equal provisions in the law. Act of 1964 and other civil and voting rights legislation and regulations." Later the council resolved, however, that "disabil- ity discrimination is distinctive," substan- Enacting the ADA tially different from other kinds of preju- dice, and thus "a separate civil rights law" In 1982, President Reagan dismissed all Pres- was necessary to address disability bias. Paul ident Carter's appointees on the National Hearne-Frieden's successor as NCD exec- Council on Disability (NCD), including Ju- utive director, serving from July 1988 to dith E. Heumann and Elizabeth Boggs- September 1989-suggested that "unlike the one of the founders in 1950, and later first women's lobby, the disability lobby was not woman president in 1958, of the National strong enough to assert itself so that people Association of Retarded Children.⁶ Mother with disabilities would be included in the of a child with a developmental disabil- Civil Rights Act of 1964."¹¹ Acknowledging ity, Boggs was "perhaps the nation's great- the advantages of the ADA, some disabil- est authority on programs that affect the ity advocates still believe that inclusion of mentally retarded, a woman of encyclo- people with disabilities in the Civil Rights pedic knowledge and enormous energy." Act of 1964 would have underscored the Boggs-a Ph.D. in theoretical chemistry and requirement by the disability population for mathematics, and a well-trained scientist- the same civil rights protection as racial and changed careers when she and her group ethnic minorities as well as women. organized classes for her son and other de- Frieden describes the change of the NCD velopmentally delayed children, in order to from a governmental advisory body in 1978 enable them to register at public schools.⁸ to an independent federal agency under When President Reagan replaced these the 1984 Amendments to the Rehabilita- appointees with Republican disability lead- tion Act: ers, he may not have realized that disability issues often transcend liberal-conservative Originally an advisory body under the ideology. Recognizing the limitations of Department of Education, the NCD was Section 504, holding meetings with disabil- housed in a small office in the basement ity leaders in every state, the new coun- of the Mary Switzer building.¹² Lacking cil appointed by President Reagan-with visibility, authority, and independence, the South Carolina Commissioner of Rehabil- council didn't have much congressional support. During the 1983 review of the itation, Joseph Dusenbury, as chair, and Rehabilitation Act, it was probably Senator Dart and Sandra Parrino as vice-chairs- Weicker who recommended raising the status published the "National Policy for Persons of the NCD to make it independent of the 90 CHAPTER SIX Department of Education. Once the council Federal Disability Policy, written in the early became independent, the president [Reagan] 1980s, Richard K. Scotch concludes that "the picked the members, and the Department effectiveness of the disability rights move- of Education could no longer edit or censor ment appears to have peaked in 1978. "20 NCD reports. 13 Dart refers to the 1988 version of the Under the leadership of Parrino, Frieden, ADA, proposed primarily to gain endorse- and disability rights attorney Bob Burgdorf, ments during an election year as "the reg- NCD proposed an ADA14 that would re- ulatory version" of the act.²¹ For example, quire accessible public transportation and the original version included a mandate to removal of employment disincentives from make all buildings accessible in two years, social security. 15 Its February I, 1986, report, "an unrealistic demand" according to Dart. Toward Independence: An Assessment of Fed- Hearne calls what he considered this in- eral Laws and Programs Affecting Persons with feasible mandate for precipitous universal Disabilities-With Legislative Recommendations, accessibility "the flat earth rule. The whole suggested that "Congress should enact a world had to be wheelchair accessible by be- comprehensive law requiring equal oppor- ing flat in two years," Hearne notes sarcasti- tunity for individuals with disabilities, with cally, "but this nonsense was wisely replaced broad coverage and setting clear, consistent, by the reasonable modification rules in the and enforceable standards prohibiting dis- ADA."22 While Frieden describes the 1988 crimination on the basis of handicap."¹ proposed legislation as having "a broader Both Parrino and Frieden credit Alvis Kent definition of disability and stricter provi- Waldrep Jr., the only member of the Council sions" than the enacted legislation, he views who remained in the NCD during Parrino's the 1988 bill somewhat differently from entire tenure as chairperson, with naming Hearne: "The thirteen-page 1988 version was the ADA. 17 introductory, an outline for the more spe- Toward Independence formed the basis of cific fifty-two-page 1990 enacted bill. But if an early version of the ADA introduced in you ask me which one I prefer, I would have 1988 by Senator Lowell Weicker (R-Conn.) to say that although the 1988 bill was the and Representative Tony Coelho (D-Calif.). stronger of the two, I'd choose the 1990 ADA In the 1980s, many disability rights lead- because it passed."² ers believed that chances of passing com- The 1990 enacted ADA, which Dart labels prehensive disability legislation were slim.¹⁸ "the empowerment version," requires that The best that was achievable, these leaders people with disabilities and their advocates presumed, were laws providing "services and file complaints and lawsuits, when appro- partial rights in incremental steps." Con- priate, as a means of monitoring compli- cerned about enforcement of Section 504, as ance.²⁴ Unlike Dart, Hearne considers the well as continued funding for disability ser- enacted legislation as both regulatory and vices, disability rights advocates feared back- empowering: lash resulting from further disability civil rights legislation.¹⁵ Dart characterizes the This law is very regulatory. It regulates states, mindset of a large segment of the disability municipalities, agencies, behavior, and they community at that time: "We can't even en- all have to comply with the Access Board. But the law also empowers people with disabilities force 504. Why waste our time talking about to recognize that they have a role in society. more? The day of civil rights is gone; there And there are two other major differences will never be another civil rights law passed." between the proposed and the enacted ADA. In From Good Will to Civil Rights: Transforming The first one defined disability by giving a THE AMERICANS WITH DISABILITIES ACT 9I laundry list of disabilities, an inefficient and sion of people with learning disabilities and anachronistic way of doing it. Ultimately the AIDS in the ADA. Persuasion by individu- ADA went back to what I supported, the well- als like Dale Brown, founding member of crafted Section 504 definition of disability. Also, the legislation includes some essentials the National Network of Learning Disabled the original version didn't-the right to sue, Adults, was required to include people with attorney's fees for successful plaintiffs, and learning disabilities on the task force.²⁸ Be- the right to collect punitive damages.25 cause the assumption has prevailed that people grow out of learning disabilities, The disability community was aware of this impairment in adults frequently has and fought for the ADA unlike its initial been unrecognized or treated with skepti- response to the Rehabilitation Act of 1973, cism by schools, vocational rehabilitation, which includes Section 504. As Edward D. and even-Brown suggests-the task force it- Berkowitz in Disabled Policy: America's Pro- self. Furthermore, as Fred Fay recalls, "There grams for the Handicapped notes, "In 1974, were objections to having members with for example, when President Ford met with AIDS-we should not have representatives a group of handicapped individuals, they of people with AIDS; people with AIDS will talked about the need for a barrier-free soci- die,' [some disability advocates insisted]. ety, the desirability of a spokesman for the Dart bristled. 'Of course they will die; so will handicapped in the White House, and the you and I. We are not into perpetuating pa- importance of making Washington's Metro ternalism,' [Dart responded]. He appointed accessible to the handicapped. No one men- two people with AIDS."29 tioned Section 504 of the Rehabilitation Some legislators unsuccessfully attempt- Act of 1973 Not until the 504 regulations ed to include language in the ADA that were at risk was the disability community would have prevented people who have or galvanized into action. By the time a small are "regarded as" having AIDS, or individ- group of disability advocates launched ef- uals who are HIV-positive, from working in forts leading to the ADA, the conscious- jobs involving food handling. Rather than ness of people with disabilities had been accepting this addition to the law, the dis- raised nationwide. ability community assented to the inclu- Established in 1988 by Brooklyn Con- sion of language in the ADA requiring the gressman Major Owens (D-N.Y.), the Task publication of a list of infectious diseases Force on the Rights and Empowerment of transmittable through food handling. If Americans with Disabilities was created to reasonable accommodation cannot reduce make recommendations to Congress on the or eliminate the risk of transmission, the ADA. In his role as co-chair of the task law allows the employer to refuse to assign force, Justin Dart brought together a dis- food handling duties to the infected indi- tinguished panel to gather information, de- vidual. Many disability advocates perceived velop ideas, and unite disparate elements the failed attempt as an effort to discrimi- of the disability community behind the nate against people who are HIV-positive or ADA. Present were representatives of of- have AIDS. ten overlooked disability groups, such as Justin Dart reveals how the community people with psychiatric and developmen- had organized and coalesced across disabil- tal disabilities.²⁷ ities in its support of the ADA: To the surprise of many disability advo- cates, some members of the disability com- During the mid-months of 1989, virtually munity expressed doubt about the inclu- every disability rights organization and leader 92 CHAPTER SIX in the country-more than eight thousand have this experience. When people doubted five hundred of them-signed and paid for Hatch's vote on the ADA, I predicted correctly a full page ad in the Washington Post urging that he would vote for it.³¹ Congress to pass the ADA and to reject "weakening amendments that would legalize intolerable discrimination." For strategic Dart characterizes the ADA victory in reasons the ad was held for publication Congress: "A ragtag hodgepodge of advo- until February 7, 1990. It was hand-delivered cates with disabilities, families, and service to every office in Congress and to the providers, who had never completely agreed President and was distributed throughout on anything before, joined together with a the nation. few farsighted members of the older civil During the same period, the Epilepsy rights movement, business, the Congress, Foundation printed and all of us [the and the Administration to defeat the rich- disability community] distributed more than one million New Year's postcards for est, most powerful lobbies in the nation. Congress: "Don't weaken a law that will The fact that President Bush, who signed strengthen America." Congress received the ADA into law, as well as the legisla- hundreds of thousands of messages-cards, tors leading the effort for congressional letters, calls, "No weakening amendments!" approval of the ADA were either them- This became the battle cry and the required selves disabled or closely related to peo- symbol of membership in our movement. Communication to the President and the ple with disabilities supports Representa- members of Congress was clear: "a vote for tive Coelho's observation: "The disability one weakening amendment is a vote against movement boasts 'a hidden army.' Since a forty three million people with disabilities." sixth of the nation's population has some form of disability, 'disability impacts prac- Guided through Congress by Senator tically every family."33 Tom Harkin (D-Iowa) and Representative Besides having spent his formative years Steny H. Hoyer (D-Md.), the ADA over- with an uncle, his mother's brother John, whelmingly passed the Senate by 76 to 8 who used a wheelchair as a result of polio,³⁴ and the House by 377 to 28. Hearne recounts President Bush had three children with an experience that may have heightened the disabilities. His daughter died of leukemia awareness of two elected officials: when she was three years old; one of his In 1987 as a way of explaining the sons had a colostomy after part of his colon constitutionality of the Individuals with was removed in 1986, while another son Disabilities Education Act, I spoke as a lawyer is dyslexic.³⁵ Parrino recalls Representative for a child with a disability on one of the Coelho's comment: "George Bush does not discussion shows Fred Friendly ran on PBS, get enough credit for the ADA. If he hadn't "The Constitution: A Delicate Balance." A wanted it, we wouldn't have had it. He made gala honoring the participants on the show was held up a huge flight of stairs at the it very clear that he wanted that bill on Philadelphia Hall of Man and Science. Soon his desk at some point in time, and he after I arrived, two tall men appeared. One wanted to sign it."³⁶ Like President Bush, took the front of my motorized scooter and Representative Coelho (who has epilepsy), the other the back, and they carried me up Senators Weicker (R-Conn.) and Harkin, the steps. One of them was Arizona Governor and Representative Hoyer (who have family Bruce Babbitt; the other, Utah Senator Orrin Hatch, who had turned blue by this time, members with disabilities), are examples of said, "Now I know what you disability people political figures with intimate knowledge of are talking about." At that point it occurred disability who played an active role in the to me that maybe every elected official should passage of the ADA. THE AMERICANS WITH DISABILITIES ACT 93 Despite the overwhelmingly enthusiastic limits a major life activity, such as walking, support for the ADA from all segments of seeing, hearing, learning, breathing, caring the disability population, the National Fed- for oneself, or working."³ It protects "those eration of the Blind-an organization that who have a disability, those who have a contends that blindness is an inconvenience record of such an impairment," and those rather than a disability-asserts that a per- who are "regarded as having such an im- son with a disability has the right to refuse pairment."40 The law protects a blind or an ADA accommodation. A complaint ex- deaf person, or a person with a spinal cord pressed by blind-from-birth NFB member injury, but the ADA also applies to a person Arthur Wohl, who was experienced at walk- who has recovered from cancer or mental ing without assistance using a white cane, illness since such people have a record of explains NFB's position. Wohl frequently having a disability. Because a qualified in- felt provoked by airline policy: "Often as I dividual with a severe facial disfigurement was getting off the plane, the flight atten- is regarded as having a disability, the ADA dant would first tell me to wait for all the protects such a person from being denied other passengers to leave the plane, and then employment because an employer fears the say get into a wheelchair. I was annoyed that negative reactions of customers or cowork- I had to wait, but I absolutely refused to get ers. As in Section 504, the definition of in- into a wheelchair. I said, 'I'm blind, but I can dividuals with disabilities in the ADA in- walk as fast and as well as anyone else.' cludes people with psychiatric disabilities, Justin Dart tells a similar story: "After alcoholics, and recovered drug addicts.41 Yet landing in England, I was informed that as a the ADA specifically excludes current drug wheelchair user, I had a right to ambulance addicts because drug addiction is illegal.⁴ service. When I declined, I was told you can In Disability Watch: The Status of People with use the service or you can stay on the plane Disabilities in the United States, H. Stephen and go back to America. "38 Dart points out Kaye notes: "Although people often asso- that this attitude is antithetical to the spirit ciate disability with its more visible man- of the ADA, for the purpose of the law is ifestations-such as wheelchairs, the canes to serve people with disabilities, not limit used by blind people, and sign language- their choices. the vast majority of people with disabilities do not require them."43 As indicated by data provided by the 1992 National Health In- The ADA and Section 504 terview Survey, the most frequent causes of disability in order of prevalence were back Although many individual states had stat- problems, heart disease, arthritis, asthma, utes protecting people with disabilities leg or foot problems, psychiatric disorders, from discrimination, the character and de- learning or developmental disabilities, di- gree of these laws varied from state to state. abetes, cancer, and cerebral vascular dis- Incorporating policies and language from ease.44 By 1997, psychiatric disability claims the Civil Rights Act of 1964 and the 1977 reg- increased so significantly that they com- ulations of Section 504, as well as previous prised the greatest number of disability dis- laws pertaining to equality for the disability crimination complaints.⁴ As these statistics population, the ADA federalized the legal reveal, "invisible" disabilities account for rights of people with disabilities. the overwhelming percentage of the fifty- The ADA defines disability as "a physi- four million whose conditions are included cal or mental impairment that substantially in the ADA definition of disability. On the 94 CHAPTER SIX other hand, the conditions usually thought Title I of the ADA, enforced by the of as disabling-mobility, visual, and hear- Equal Employment Opportunity Commis- ing impairments-are less prevalent than is sion, bars employers from discriminating commonly assumed. against a qualified individual with a dis- Section 504 was used primarily to address ability because of the "disability of such what disability advocates have referred to as individual in regard to job application pro- the comparatively "easy" issues-for exam- cedures, the hiring, advancement, or dis- ple, architectural and transportation acces- charge of employees, employee compensa- sibility. The major argument put forth by tion, job training, and other terms, con- disability advocates for the 1990 ADA was to ditions, and privileges of employment."5 increase employment of people with disabil- Just as the ADA definition of an individual ities. Since employment discrimination- with a disability is identical to the Section often difficult to prove-is relevant to peo- 504 term, "handicapped person," the ADA ple with all types of disabilities, visible and meaning of a qualified individual with a invisible, individuals with a greater variety disability is similar to the Section 504 des- of disabilities filed complaints and lawsuits ignation, "qualified handicapped person." under the ADA than those filing under Sec- In order to prevent employment discrimi- tion 504. In some cases, the ADA has re- nation against qualified persons with dis- sulted in thornier legal questions than Sec- abilities, employers are barred from asking tion 504. Whether or not a building is physi- perspective job applicants if they have a cally accessible is generally readily apparent; disability. Title I went into effect on July 26, however, whether a job applicant is rejected 1992, for employers with twenty-five or more because of lack of qualifications or because employees; since July 26, 1994, however, Title of disability bias frequently is not so clear. I requires employers with fifteen or more Unlike other civil rights legislation, laws employees to comply. ensuring federal civil rights for people with "Reasonable accommodation" for a qual- disabilities occurred in two stages: first, Sec- ified employee with a disability is mandated tion 504 applying to entities receiving fed- unless that provision causes the employer eral financial assistance; second, the 1990 "undue hardship," which refers to signifi- ADA dealing with both the public and the cant difficulty or expense.51 "Reasonable ac- private sector. Inasmuch as 80 percent of commodation" may include, but is not lim- American jobs was in the private-rather ited to, the following: making existing fa- than the public-sector, the ADA was re- cilities used by employees readily accessible quired as a supplement to Section 504 in to and usable by persons with disabilities; order to increase occupational opportuni- restructuring jobs, modifying work sched- ties for the 75 percent of unemployed peo- ules, or reassigning employees to vacant po- ple with disabilities who can and want to sitions; acquiring or altering equipment or work.47 "In signing the ADA, President Bush devices; adjusting or revising examinations, estimated that federal, state, and local gov- training materials, or policies; and provid- ernments spent almost $200 billion to sup- ing qualified readers or interpreters. port people with disabilities."⁴⁸ A 1990 to While a qualified individual presently us- 1993 study determined that "the ADA has ing alcohol may be covered by the ADA, a played a significant role in enhancing labor current illegal user of drugs who can per- force participation of persons with disabili- form the essential functions of the job is not ties and in reducing dependence on govern- protected by the law because alcohol use is ment entitlement programs."49 legal while illegal drug use is criminal. Yet THE AMERICANS WITH DISABILITIES ACT 95 the ADA covers a person "erroneously re- The defendant neither offered evidence of garded" as using drugs or an individual who the essential functions of the job at issue has "successfully completed" or is "partici- nor indicated which of these functions Ben- pating in a supervised rehabilitation pro- son could not perform with a "reasonable gram" and is no longer engaging in the accommodation." In addition, Northwest use of drugs. Nonetheless, the ADA pro- failed to show that either restructuring or vides employers with the authority to hold transfer would cause the airline "undue all employees, regardless of disability, who hardship." abuse legal drugs or alcohol to the same job EPVA attorney James Weisman points out performance criteria as other employees.⁵² that many ADA cases are avoided because the opposing parties settle their differences out of court. At a 1998 conference of so- Title I: Employment cial work professionals,⁵¹ he described his role in settling an employment discrimina- Two 1995 cases demonstrate how appellate tion dispute: courts have interpreted three terms fun- A woman called me to ask for my help because damental to Title I of the ADA, the "es- she claimed that she was just fired because sential function of a job," "reasonable ac- she recently had a mastectomy. When I called commodations," and "undue hardship." In the chic Fifth Avenue department store [in Riley v. Weyerhaeuser Paper Company,5 the New York City] where she worked, I said to court determined that the employers did the manager, "I have a woman here who says not discriminate on the basis of disabil- you let her go because she had a mastectomy." He could have given a legitimate reason for ity because the company could not pro- firing her. But no, he said, "it wasn't the vide an alternate position for the employee mastectomy; it was the cancer. It depressed who was unable to perform the essen- the other workers, so I thought it was best to tial function of the job. Defendant Weyer- get rid of her." Of course, when I informed haeuser Paper Company successfully argued the department store that this was an ADA that plaintiff Riley could no longer be em- violation, she was immediately reinstated. ployed in the firm. Since all the jobs in the If there were no ADA, would this woman plant involved working around machinery have felt that she had the right to demand and Riley's disability-multiple sclerosis- her job back? If there were no ADA, would prevented him from performing any of the department store have given her the them, there was no position in the firm job back? appropriate for him. Thus, Weyerhaeuser Paper Company was unable to provide "a reasonable accommodation" for Riley. Title III: Public Accommodation In Benson v. Northwest Airlines, 54 the Eighth Circuit Court of Appeals reversed the dis- Like Title I covering employment, Title III trict court's decision that the plaintiff, di- of the ADA concerning public accommo- agnosed with a repetitive motion injury, dation derives from the Civil Rights Act failed to establish his ability to perform the of 1964. Effective since January 26, 1992, essential function of his job. The appeals the public accommodation provisions, reg- court offered these reasons for its determi- ulated by the Department of Justice, bar nation that under Title I of the ADA, the discrimination based on disability in any district court should have shifted the bur- public business or service operated by pri- den of proof from Benson to Northwest. vate entities.⁵ Moreover, goods, services, 96 CHAPTER SIX and accommodations must be offered in that the parties involved had reached a set- the "most integrated setting appropriate tlement whereby the observation tower of to the needs of the individual. »57 Places the Empire State Building would become of "public accommodation" includes stores available to people with disabilities, includ- and shopping centers, restaurants, offices, ing wheelchair users, by June 6, 1994. The banks, theaters, museums, stadiums, and concept of "readily achievable" when ap- hotels and motels, as well as any site open plied to the observation tower of the Empire to the public operated privately such as State Building-which in I994 attracted 2.5 schools, day care or senior citizen centers, million visitors a year, each paying a $3.50 and recreational establishments.⁵ entrance fee-has a very different meaning Title III requires that new, or newly al- when applied to, say, a small neighborhood tered, facilities constructed after January grocery store. 26, 1993, be wheelchair accessible. Build- The modifications by architect Peter Han- ings less than three stories or less than rahan-including the ramp leading from the three thousand square feet per story do eighty-sixth floor to the observation tower not require elevators, except for shopping surrounding the edifice-were designed in centers and offices of professional health Art Deco style, the same style as the Em- care providers.⁶ In addition, the law man- pire State Building. Furthermore, the rail- dates that if "readily achievable," architec- ings of the outside deck were gracefully tural and communications barriers must be constructed, allowing wheelchair users an removed in existing structures. The term unobstructed view from four different loca- "readily achievable" is defined in the statute tions: north, south, east, and west. Playfully as "easily accomplishable and able to be spoofing the access to the observation tower carried out without much difficulty or ex- of the Empire State Building, the satirical pense. Factors to be considered include television show Saturday Night Live presented the nature and the cost of the structural a cartoon of an absurd mile-long ramp ex- modification, as well as the size, financial tending from the eighty-sixth floor to Cen- resources, and type of business. If removal tral Park. Seven years after the lawsuit was of the barrier is not "readily achievable," filed, artist Janet Koenig's poster celebrating the ADA decrees that goods or services Disabled In Action v. Empire State Building was must be made available through alterna- chosen by the Fordham Urban Law Journal tive methods if such methods are "read- as representing the collaboration of com- ily achievable." munity activism and law "to move the most On January 27, 1992, the day following rooted of institutions and structures. "63 the effective date of Title III, Disabled In A similar Title III complaint filed by DIA Action of Metropolitan New York and Bar- at the same time as the Empire State Build- rier Free Living, an agency providing tran- ing case involved the Inter-Continental Ho- sitional housing for people with disabili- tel, the New York City headquarters for the ties, demonstrated for accessibility to the Clinton entourage during the 1992 Demo- observation tower on the eighty-sixth floor cratic Convention. Managers of the Clin- of the Empire State Building. The protest ton campaign were troubled when they at a national symbol, one of the first Title learned that an ADA complaint had been III legal actions, called nationwide attention initiated against the inaccessible hotel. Ex- to DIA's Title III complaint against the Em- peditiously, the hotel erected a temporary pire State Building Company. By March 3, ramp at the entrance during the weekend 1994, the Department of Justice announced so that the parties could meet at the hotel THE AMERICANS WITH DISABILITIES ACT 97 a few days later to reach an agreement. A heavyweights, the Justice Department and year later, after all the modifications were Days Inn": completed, the hotel held a press confer- "The Hauks constructed their hotel in ence, together with the U.S. Justice Depart- accordance with Days Inn standards," [the ment, in order to exhibit the excellence of attorney] continued, "had their building its ADA compliance. plans reviewed and approved by Days Inn Despite the apparent success of the Title prior to construction, and obtained Days III complaint filed against the United Artists Inn approval before opening." [The attorney] Theatre Circuit by the Disability Rights Ed- reported that Mr. Hauk said: "We believe in ucation and Defense Fund, the organiza- making buildings accessible to the disabled and we thought that we had done just that. tion's goal-accessible movie theaters-has Our expectation was that Days Inn, when it not yet been fully realized. United Artists set forth standards for the building we could agreed to make more than four hundred construct and approved of our building, was of its movie theaters across the country watching out for whether our hotel was in accessible by the year 2001. 64 Although all compliance with Federal laws." the theaters built before January 26, 1993, "The Hauks were trying to work out were required to be barrier-free, newly con- modifications with the Justice Department that may cost well into six figures," the structed theaters built after that date were lawyer said. to be held to a higher standard of accessi- Mr. Hauk said, again through his lawyer: bility. The May 1996 resolution sent what "We feel betrayed and abandoned by both seemed at the time to be an unambiguous Days Inn, which so far has washed its hands message to all large movie chains regard- of the matter, and the Justice Department, ing Title III compliance.65 After the reso- which seems to be using us to prove a point." lution, however, a wheelchair inaccessible The proprietors of twenty-three of the movie theater design, known as "stadium twenty-eight newly-built Days Inns agreed seating," began to be used increasingly in to negotiate with the Justice Department. theater architecture. Consequently, peo- The defendants were the owners of the five ple with mobility impairments are still fre- remaining Days Inns, the individual archi- quently unable to get appropriate seating at tects and general contractors of the hotels, the movies. as well as Days Inn of America, Inc., and The February 1996 suit by the Justice its parent company, HFS, Inc. Days Inn Department against Days Inn, the biggest of America and HFS argued that although economy hotel chain in the country with they fully support the ADA, they only fran- seventeen thousand hotels in forty-nine chise hotels, so they bear no responsibility states, reveals the potential scope of the in this controversy. Yet, John Wodatch of the ADA. Twenty-eight hotels in seventeen Justice Department contended that the fail- states that were built since January 26, ure of HFS to design and construct places 1993, were sued under Title III of the ADA that accommodate everyone was an act of for failing to comply with the public ac- discrimination. commodation law.⁶ The cases also illus- Wodatch pointed out that owners and trate, however, the vulnerability of small architects must be alerted to follow the business people. The attorney for Richard law in the planning and building of new and Karla Hauk, the owners of one of the structures. In fact, he observed that the Days charged motels, characterized the litigation Inn cases-stemming from the complaints as one in which individual entrepreneurs of several dozen travelers-concern the least are caught in the struggle "between two burdensome type of compliance: 98 CHAPTER SIX "New construction is the easiest part," he Department of Transportation.70 The first said. "We [the Justice Department] want involves carriers in the business of trans- them [owners and architects] to take a porting people, such as private bus lines, look when they build and then they won't taxicabs, and limousines. With regard to have to worry." A bathroom doorway to accommodate a wheelchair, for example, newly-purchased buses on fixed route sys- would need a clear width of 32 inches. This tems, all intracity buses are required to be is a no-cost item in the design stage, he said, accessible, while intercity buses must be ac- but widening a doorway in a cinder-block cessible beginning October 2000.7¹ Taxicabs construction is another matter. using sedan-type automobiles do not have to be accessible, while taxicabs using vans Building according to the ADA specifica- must be accessible. tions is uncomplicated and cost effective; The second type of private transportation problems arise when new structures not covered by Title III deals with services inci- in compliance with the ADA have to be dental to the primary purpose of the busi- retrofitted. By late 1999, Days Inn of Amer- ness, such as hotel vans transporting people ica and its new parent company, Cedant to and from airports. Depending on the Corporation, settled their lawsuit with the seating capacity of the vehicle, the second Justice Department by providing interest- type requires either wheelchair accessibility free loans to newly-built franchises of the or "equivalent service."72 "Equivalent ser- hotel chain for renovations necessary for vice" in this context means that although ADA compliance. 68 Wodatch noted that the all hotel vans do not have to be accessible, a settlement reveals "an industry-wide prob- sufficient number of vehicles must be avail- lem" and that "we [the Justice Department] able to serve wheelchair users. intend to follow up with other hotels and hotel chains in the United States to ensure that this problem doesn't exist." Title II: Public Services In addition to a movie theater chain and (State and Local Government) a hotel chain, the Justice Department dealt with an ADA issue involving a restaurant Title II of the ADA, dealing with public chain, Friendly's family restaurants. In the service⁷³ and public transportation, is based May 19, 1997, settlement with the Justice on Section 504. Like Title III, two different Department, under Title III, the Friendly agencies implement and enforce Title II: Ice Cream Corporation agreed to a six-year the Justice Department covers public ser- program that would increase the accessi- vice, and the Department of Transporta- bility of 704 of its restaurants in fifteen tion monitors public transportation. Effec- states. The accommodations that will be tive January 26, 1992, no qualified individual provided include redesigned dining areas with a disability may be excluded because. to suit wheelchair users, accessible park- of that disability from "participation in or ing areas and curb cuts, modified exist- denied the benefits of the services, programs ing restrooms or newly-constructed acces- or activities of a public entity."74 sible restrooms, and provision of menu Moreover, Title II requires "program ac- readers or audio versions of the menu for cessibility," meaning that all public pro- blind customers. grams and services, when viewed as a whole, Although Title II covers public transporta- must be accessible to and usable by indi- tion, Title III regulates two types of pri- viduals with disabilities, "in the most in- vate transportation, both overseen by the tegrated setting possible." For example, if THE AMERICANS WITH DISABILITIES ACT 99 the setting is not accessible to a wheelchair 1992, EPVA filed suit against the New York user, the government is required to move City Department of Transportation in 1994. the site or offer an alternative that allows EPVA observed that with neither a plan nor the wheelchair user to participate "in the preparation for curb cuts in place, New York most integrated setting possible." Struc- City clearly would be unable to meet the tural changes required for "program acces- ADA effective date, January 26, 1995. Since sibility" must be made as quickly and effi- curb cuts are relevant to any locality with ciently as possible, but no later than January sidewalks, most of the nation is impacted by 26, 1995. A public entity employing fifty or decisions in these cases. Despite complaints more people must have devised a transition by many localities that implementing the plan by July 26, 1992, indicating the steps law requiring curb cuts is an undue finan- needed to implement changes. cial burden, the Justice Department did not An example of such structural changes, extend the ADA compliance date.⁷⁷ curb cuts-sloped areas at street intersec- Disability advocates argued that if lo- tions⁷⁵-are required by people using wheel- calities had acted in accordance with the chairs and scooters. Because the Pennsyl- 1977 regulations of Section 504 (which later vania Department of Transportation and became the flexible federal ADA mandate), the Philadelphia Streets Department were most curb cuts would already be completed. constructing and altering streets without In 1995, when many members of Congress building curb cuts at intersections, Dis- were criticizing unfunded federal mandates, abled In Action of Pennsylvania (together the ADA was inappropriately targeted as a with twelve individual plaintiffs) and East- law to be suspended or limited to volun- ern Paralyzed Veterans Association filed a tarily compliance in a manner that takes Title II class action lawsuit in July 1992. The into account the needs of state and local decision in this suit mandated that not only governments. First, as civil rights legisla- the defendants, but also ultimately all local- tion, the ADA was mischaracterized as an ities nationwide, were compelled to provide unfunded federal mandate. Second, laws curb cuts whenever streets were repaired or are ineffective when compliance is not re- newly constructed. Compliance with this quired. The fact that this mischaracteriza- ruling has been required since Title II went tion of the ADA as an unfunded federal into effect on January 26, 1995. mandate lingers suggests that many policy- Soon after, the plaintiffs sued the defen- makers and social critics do not recognize dants again, this time for the installation of that people with disabilities are covered by curb cuts on every street intersection in Phil- civil rights legislation.78 adelphia, not just on those altered or newly In another Title II case, a deaf attorney, built. The settlement, favoring the plaintiff, Michael Chatoff, sued the New York City necessitated curb cuts on every corner in the Police Department under the Public Ser- downtown business district of Philadelphia vices section of the ADA, on behalf of more by December 31, 1996, and in the rest of the than two hundred thousand deaf and hard- city by December 3I, 200I. Since Title II had of-hearing residents of New York City, for required these curb cuts by January 26, 1995, failing to make the 9II emergency system this agreement represented a compromise. directly accessible to teletypewriter users. Noting that New York City had not pre- On January 27, 1992, the effective date of pared the required schedule for construct- Title II, Chatoff filed the lawsuit in U.S. ing curb cuts at all sidewalk corners man- District Court (S.D.), arguing that the issue dated by Title II of the ADA by July 26, was "a matter of life and death. "79 Because 100 CHAPTER SIX of this lawsuit, the New York City Police ing, jury boxes, restrooms, and parking fa- Department's Communication Division 9II cilities, as well as assistive listening devices, Emergency Call Center became fully accessi- teletypewriters, and signage. Consequently, ble by December I, 1992, to persons utilizing LaCheen continued, people with disabilities teletypewriters. As a means of implement- are prevented from fully participating in the ing this accessibility, members of the cen- legal system in New York City as litigants, ter participated in a training program that lawyers, witnesses, jurors, court personnel, included teletypewriter operation, disability and spectators. Although the case was still awareness sessions, and protocol in Ameri- pending in 2000, courts that failed to make can Sign Language for communicating with modifications necessary to accommodate people who are deaf, hard of hearing, or people with disabilities by January 26, 1995, speech impaired. were in violation of Title II of the ADA. A 1996 class action Title II lawsuit on be- Decided on January 31, 1995, by the U.S. half of the New York City Civic Association Court of Appeals, Third Circuit, Helen L. of the Deaf involved a similar issue: elimina- v. Didario was a Title II lawsuit that may tion of many New York City lever-activated have far-reaching consequences for peo- fireboxes and conversion of the remaining ple with disabilities who are institutional- fireboxes to intercoms. The court decided ized in nursing homes although they wish that the two-way voice system did not pro- to remain in their own communities and vide deaf people, who cannot use ordinary in their own homes. 81 The appeals court telephones or intercoms, with equal access reversed the ruling of the U.S. District to a vital public service. A solution offered Court for the Eastern District of Pennsyl- by the New York City administration, utiliz- vania that Didario (the nursing home ad- ing tapping codes so that deaf people could ministrator) was in compliance with the indicate different types of emergencies, left ADA because he was not discriminating many questions unanswered. For example, against Helen L. Rather than accepting Di- will the city provide a training program for dario's argument that shifting attendant the deaf population as well as the dispatch- care services from the nursing home to the ers handling these problems? The newspa- home of Helen L. involved "fundamental per accounts dealt only with the issue of alterations," the appeals court determined bias against poor communities where fire- that the modifications constituted "reason- boxes are often essential because telephones able accommodations." are not readily available.⁸ Discrimination Because the ADA decrees that home at- against deaf people was not mentioned. tendant services be provided in the "most On December 8, 1995, the Disability Law integrated setting appropriate," the appeals Center of New York Lawyers for the Public court supported the plaintiff's claim that Interest initiated Title II complaints against the services she received in the nursing fifteen courthouses in New York City be- home could be given in a setting she pre- cause they were not accessible to people with ferred, her own home.⁸² The appeals court all types of impairments. Filing on behalf considered the nursing home a "segregated" of Disabled In Action of Metropolitan New environment, not consistent with the ADA York, Cary LaCheen, senior staff attorney at mandate requiring "the least restrictive en- the Disability Law Center, argued that these vironment," because in the institution He- courts lack important features for people len L. had "no contacts with nondisabled with disabilities, such as accessible front en- persons other than the staff of the nursing trances, elevators, courtrooms, public seat- home and visits from her two children." THE AMERICANS WITH DISABILITIES ACT IOI Without demanding proof of "intentional stations, except for commuter rail stations, or overt discrimination," the appeals court were required to be barrier-free was July 26, determined that "unnecessary segregation 1993. If renovations involve extraordinarily of individuals with disabilities in provision expensive structural changes, however, this of public services is itself a form of discrimi- date may be extended to July 26, 2020, nation" according to both the ADA and the provided at least two-thirds of the key Rehabilitation Act. The Supreme Court's stations are accessible by July 26, 2010. denial of certiorari in 1995 in the Helen L. case sustains the Third Circuit court's deci- sion. 83 Furthermore, as indicated by the 1995 Title IV: National Telephone statistics, the average annual cost of caring Relay Service for a person in a nursing home is $45,000, while the average annual cost of caring for Unlike Titles I and III based on the Civil a person in the attendant care program in Rights Act of 1964, and Title II modeled his or her own home is $10,500.84 after Section 504, Title IV mandating na- tionwide, daily, twenty-four-hour intrastate and interstate relay services originated with Title II: Public Transportation the ADA. 86 To ensure equal access to tele- phone services, Title IV enables people with Title II also mandates that people with dis- hearing and speech impairments who use abilities, including wheelchair users, have teletypewriters to communicate with peo- access to public transportation, which refers ple who use voice phones. Relay operators to transportation within and between cities, cannot change the content of conversations, such as bus and train systems, provided limit the length of calls, maintain records, by state or local governments. All newly- or disclose to others the contents of relayed constructed public transportation facilities conversations. Rates for relay users cannot and portions of existing facilities being al- exceed rates charged for voice calls of equiv- tered, such as train stations or bus depots, alent duration, time of day, and distance must be barrier-free. Fixed-route systems, called. Title IV also requires television sta- meaning commuter rail systems,8 subways, tions to include close-captioning of public trolleys, and buses, must ensure that peo- service announcements that are federally ple with disabilities, including wheelchair funded, in whole or in part. The Federal users, can access and use the vehicles. All rail Communications Commission serves as the systems must have at least one accessible car implementing and enforcement agency. per train. Furthermore, public entities that operate fixed-route systems must provide paratransit service, which is comparable in Title V: Miscellaneous service level and response time to service typically available to fixed-route customers, Title V consists of some key clarifications, unless so doing would impose an undue exclusions, and add-ons to the ADA.⁸⁷ First, financial hardship. the ADA cannot be employed as a means Effective dates for required accessibility of decreasing the standards established by of rail stations were extended because they Title V of the Rehabilitation Act of 1973, are more difficult and expensive to modify which consists of Sections 501 through 504 than vehicles such as trains, trolleys, and and additions to Title V. Second, states are buses. The effective date that all "key" rail subject to the ADA, but the ADA does not IO2 CHAPTER SIX nullify state or local laws that provide pro- write an opinion with major implications tections equal to or greater than those of the not only for the law on the disease itself but ADA. Third, the winning party in an ADA also for disability rights law in general."⁹¹ action, other than the U.S. government, may On April 7, 1998, "Gay Men's Health Crisis be awarded reasonable attorneys' fees, in- in Brief," a weekly newsletter, noted that cluding litigation expenses and costs. Other "no matter what legal niceties are displayed significant provisions involve the following: to convince the highest court in the land explanations of the definition of disability on this matter, we who deal with the HIV- according to the ADA; protection of people positive virus every day on legal matters rec- who have filed claims or participated in in- ognize the following painful reality. An HIV- vestigations, proceedings, or hearings under diagnosis casts a long shadow of discrim- the ADA; and the role of agencies in offering ination over the person who lives with it technical assistance to entities covered by whether or not that person is symptomatic." the ADA. This lawsuit was especially compelling for two reasons: "After seventeen years, the [U.S. Supreme] Court [had] its first case involving The Supreme Court and the ADA AIDS,"92 and lower courts had been split on the applicability of the ADA to invisible On March 30, 1998, the U.S. Supreme Court disabilities such as HIV. heard oral arguments on its first ADA case, On June 25, 1998, in a five to four ruling, Bragdon v. Abbott, a lawsuit to determine the Supreme Court held that the woman's whether or not the ADA definition of dis- decision not to have children because of ability includes asymptomatic HIV.⁸ The her HIV-positive status brought her within case involved the appeal of a Maine den- the ADA's definition of disability: an im- tist who was found to have discriminated pairment that substantially limits one or against a woman-infected with the HIV more major life activities.⁹ The New York virus-by refusing to treat her in his of- Times reported, "Millions of Americans fice.⁸ Interestingly enough, her case was with conditions like diabetes, epilepsy, and supported by both the American Medical even infertility and alcohol addiction ap- Association and the American Dental Asso- pear to have won important new protec- ciation.⁹⁰ Before the case reached the U.S. tion against discrimination as a result of Supreme Court, the U.S. Court of Appeals [this] Supreme Court ruling, advocates for the First Circuit accepted the argument say.⁹⁴ Subsequent ADA decisions by the that the woman's HIV status substantially Supreme Court, however, countered this limited a major life activity, reproduction, impression.⁹⁵ and thus she was covered by the ADA. Con- As with the Bragdon case, lower courts sequently, the appeals court did not accept were divided on the basic issue underlying the weaker argument that because of her the second ADA lawsuit considered by the HIV status, she was regarded as having a Supreme Court, Pennsylvania Department of disability and therefore covered by the ADA. Corrections v. Yeskey: Does the ADA cover A week before the Supreme Court heard state prisons?⁹⁶ When Ronald Yeskey, be- the arguments in the case, the New York cause of his disability-hypertension-was Times reported in a front-page article that denied the opportunity to shorten his state "discrimination against people who carry prison sentence by spending six months in a the virus that causes AIDS offers the Jus- youthful offender "boot camp," the district tices a surprisingly blank slate on which to court dismissed his complaint, finding the THE AMERICANS WITH DISABILITIES ACT 103 ADA inapplicable to state prisons. Ruling tunity to present, or to contest, these ex- that the ADA does cover state prisons, how- planations." The impact of the decision will ever, the Supreme Court on June I5, 1998, make it possible for millions of adults who unanimously upheld the 1997 decision of receive Social Security disability benefits to the Court of Appeals for the Third Circuit be protected against discrimination under that had reversed the district court.97 Ar- the ADA if and when they are able to return guing for Yeskey, the U.S. Solicitor General to the work force. said that "the law applied to state prisons, On June 22, 1999, the Supreme Court [citing] the Rehabilitation Act's twenty-five ruled on four cases involving two ADA is- years of application to federal prisons." sues: First, in Olmstead v. L.C. and E.W.,¹⁰¹ the The ADA, "a logical extension" of the Reha- Court upheld the "integration regulation" bilitation Act, "could work without undue of the ADA, which ordains that individuals difficulty," he added.99 with disabilities must be offered services in On May 24, 1999, the Supreme Court de- the "most integrated setting." The Court cided Carolyn C. Cleveland v. Policy Manage- further stated, "Undue institutionalization ment Systems Corp., et al., a case dealing with qualifies as discrimination by reason of the differing definitions of disability in the disability." Second, in three employment ADA and in the Social Security Disability cases, Sutton et al. v. United Air Lines, Inc., 102 Insurance (SSDI) provision of the Social Se- Murphy v. United Parcel Service, Inc., 103 and curity Act. 100 Delivering the opinion of the Albertsons, Inc. v. Kirkingburg, 104 the Court Court, Justice Stephen Breyer stated: determined that individuals whose condi- The Social Security Act and the ADA tions do not substantially limit any life ac- both help individuals with disabilities, tivity and/or are easily correctable are not but in different ways. The Social Security disabled according to the ADA. Act provides monetary benefits to every William Stothers, deputy director of The insured individual who "is under a Center for an Accessible Society, describes disability" The ADA seeks to eliminate the Olmstead decision: "The high court up- unwarranted discrimination against disabled held individuals. that Georgia's Department of Hu- In our view, however, despite the appearance of conflict that arises from man Resources could not segregate two the language of the two statutes, the two women with mental disabilities in a state claims do not inherently conflict to the point psychiatric hospital long after the agency's where courts should apply a special negative own treatment professionals had recom- presumption That is because there are mended their transfer to community too many situations in which an SSDI claim care."¹⁰⁵ This ruling, Stothers adds, "is con- and an ADA claim can comfortably exist side sistent with research that demonstrates the by side. Cleveland explains the discrepancy between social and economic value of having indi- her SSDI statements that she was "totally viduals with disabilities live in their com- disabled" and her ADA claim that she could munity with the appropriate services." Olm- "perform the essential functions" of her job. stead, in which seven states-down from The first statements, she says, "were made in twenty-six-filed an amicus curiae brief with a forum which does not consider the effect the Court supporting the State of Geor- that reasonable accommodations would have on the ability to work." gia, is characterized by disability attorney Stephen Gold as a defining moment for the The unanimous Supreme Court decision ADA. 106 If the Supreme Court had ruled vacating the summary judgment against in favor of Georgia, he observes, the ADA Cleveland offered both parties "the oppor- would have become a mere shell of what it 104 CHAPTER SIX was intended to be, stripping away its major and, therefore, is entitled to the basic assur- civil rights provision-integration. ances that the Act affords-focuses on her Each of the three employment cases had past or present physical condition without a different twist: In Sutton, two pilots were regard to mitigation that has resulted from re- turned down for jobs because they did not habilitation, self-improvement, prosthetic devices, meet the airline's minimum requirement of or medication. "109 Stevens noted that the case uncorrected visual acuity at 20/100 or better, asks whether the ADA allows people to a condition that was correctable. In Murphy, claim its protections "in the same way as Ti- a mechanic/driver was fired for high blood tle VII of the Civil Rights Act of 1964 does for pressure, a condition correctable with med- every single individual in the work force." ication. Finally, in Albertsons, a truck driver Continuing the analogy to race, he stated, was dismissed because of a serious vision "Congress focused almost entirely on the impairment causing him to fall below the problem of discrimination against African- Department of Transportation standards Americans when it enacted Title VII. But of visual acuity. In all three decisions, the that narrow focus could not possibly justify majority of the Supreme Court supported a construction of the statute that excluded the employer. Justice Sandra Day O'Connor Hispanic-Americans or Asian-Americans or, delivered the opinions of the Court in both as we later decided (ironically enough ) the Sutton and Murphy cases. In the Sutton Caucasians."¹⁰ Moreover, he added, "The opinion she wrote, "A 'disability' means only Court was cowed by respondent's [United where an impairment 'substantially limits' Airlines] persistent argument that viewing a major life activity, not where it 'might,' all individuals in their unmitigated state 'could,' or 'would' be substantially limiting would lead to a tidal wave of lawsuits. if mitigating measures were not taken. A The Court's approach would seem to allow person whose physical or mental impair- an employer to refuse to hire every per- ment is corrected by medication or other son who has epilepsy or diabetes that is measures does not have an impairment that controlled by medication or every person presently 'substantially limits' a major life who functions efficiently with a prosthetic activity."¹⁰⁸ She continued: limb." Both Sutton and Murphy were about whether people were "disabled" as the ADA Congress did not intend to bring under defined the term, Stevens argued in Sutton, the [ADA] statute's protection all those instead of about whether people had en- whose uncorrected conditions amount to disabilities Had Congress intended to countered disability discrimination.111 include all persons with corrected physical Disability rights attorney Chai Feldblum, limitations among those covered by the Act, it who helped draft the ADA, explains how the undoubtedly would have cited a much higher decision will militate against the intention number [than forty-three million] of disabled of the Congress when it passed the ADA- persons in the findings. That it did not is keeping people with disabilities in the work evidence that the ADA's coverage is restricted force: "These decisions create the absurd to only those whose impairments are not mitigated by corrective measures. result of a person being disabled enough to be fired from a job, but not disabled enough Disability advocates concur with Justice to challenge the firing."¹¹² While disabil- John Paul Stevens in his strong dissents in ity activist and scholar Nadina LaSpina, a Sutton and Murphy. In Sutton, Stevens stated wheelchair user, attributes the success in that the question "whether an individual is Olmstead to the mobilization of the dis- 'disabled' within the meaning of the Act- ability community by American Disabled THE AMERICANS WITH DISABILITIES ACT I05 for Attendant Programs Today (ADAPT), that of the disability community's. With she holds disability activists responsible for the passage of time, the Court may re- loss of the three Supreme Court employ- visit the issues in the employment cases, ment cases: ultimately recognizing that the disability Busy organizing to fight the Olmstead discrimination-not the definition of dis- threat, our community did not pay very much ability-should be the primary focus. Per- attention to the three employment cases haps, had there been a national cross- being reviewed by the Supreme Court. And disability organization, such as the Amer- that was a big mistake. The Justices didn't ican Coalition of Citizens with Disabili- hear from us, but you can bet they heard from the business community. In the papers, the ties (1974-1983), the disability community op-eds and letters to the editors were all from would have been galvanized to carefully ex- business interests hellbent on undermining amine the implications of-and effectively the ADA assert its position on-these pivotal employ- And while the ADA's enemies wailed and ment cases. raved, our community kept quiet. Why? Because we thought we had more urgent matters to address, more important battles to fight? Because we couldn't really identify with The Myth of "The Disability Lobby" nearsighted pilots the way we could with two women locked up in an institution? Because Echoing many ADA critics, Philip K. secretly or not so secretly many of our own Howard's statement in The Death of Com- people feel annoyed when those who are not mon Sense, "The disabled lobby is wag- "truly disabled" try to reap the fruits of our ing war against every other citizen,"¹¹⁶ as- hard work? Whatever the reason, the damage sumes a clear adversarial relationship be- is done. 113 tween nondisabled and disabled people. Ap- Disability attorney Peter Thompson de- parently, the author has not accepted dis- scribes the damage. As Justice Stevens pre- ability as a universal possibility, or even dicted, Thompson says that his clients with probability, for most of humankind. Fur- diabetes, epilepsy, or severe arthritis will thermore, he ignores the great number of no longer automatically be considered dis- nondisabled people intimately connected abled.¹¹⁴ Consequently, the time-consum- with loved ones with disabilities, for whom ing, expensive effort to determine "the ex- they care and advocate. Although Howard tent to which the person is impaired," he presents the "disability lobby" as a potent points out, will discourage lawyers from adversary, another critic of the ADA, Brian bringing claims. For example, Thompson Doherty, asserts in the American Spectator indicates that one of his clients who received that "no grass-roots movement campaigned a disciplinary memo after experiencing an for the bill. "117 At the same time, Doherty epileptic seizure at work is not only unable imagines a well-orchestrated, well-financed to sue as a result of the Supreme Court campaign in which "a disabled person from decision but also cannot invoke the law to every member's district was sent to lobby prevent further harassment. for the ADA. "118 Doherty never indicates Just as the Court failed to appreciate the who sent these lobbyists. The truth was real disability issues inherent in Davis (1979) that many individuals with disabilities, and and Rowley (1982), the Court has misinter- members of grass-roots organizations such preted these three employment cases. 115 In as independent living centers, ADAPT, DIA, decisions following Davis and Rowley, the and the American Council of the Blind, as Court's position was more consistent with well as Gallaudet students, used their own I06 CHAPTER SIX limited financial and physical resources to gender, the ADA has been the recipient of advocate in Washington for a bill that they backlash. Justin Dart has suggested that all considered essential for their own achieve- movements that allow a formerly powerless ment of equality. people to determine their own destiny en- Besides organizing a celebration on the gender hostility in individuals comfortable day of the signing of the ADA, disability ac- with the status quo. Dart explains, "Many tivists coordinated two earlier ADA marches of these journalists and media personalities in Washington in order to rally support for antagonistic to the ADA expect oppressed the legislation. People with varying degrees people to stay in their place."¹²⁰ of disability traveled from all parts of the The anticipated backlash has been sur- country, some from as far as California, prisingly pernicious, however, spreading many at their own expense. Harry Wieder, a confusion and misinformation about the New York City demonstrator with a disabil- legislation. For example, in his Reason ar- ity, describes his experience at the second of ticle "Unreasonable Accommodation: The the two marches: Case against the Americans with Disabil- ities Act," Doherty reveals a lack of un- We took the Amtrak train at 5:30 in the derstanding of the meaning of significant morning from Pennsylvania Station to Union terms essential for comprehension of the Station in Washington, D.C. We joined the march to the Capitol and stayed there law. In fact, Doherty argues that an ADA while the Senate was debating the ADA. complaint involving the ramping of four At the last demonstration, some people in steps to a diner will contribute to establish- wheelchairs climbed up the Capitol steps, ing "the specific meaning" of "ambiguous which some of us thought really made a phrases" such as "undue burden" and "rea- point, and others thought fit the negative sonable accommodation," two terms appli- stereotypes too much, so we all don't think cable only to Title I and Title II, not to Title alike. This time, even though they told us to go, we stayed in the Capitol for hours, all III public accommodation cases. The appro- kinds of people, blind people, deaf people, priate term for this Title III case that Do- people in chairs, people with developmental herty described is "readily achievable." The impairments, all kinds. Then when we got law is simple; the complication is caused word that the Senate passed the bill, we by Doherty's lack of understanding of the cheered and hugged and went home. It legislation he is criticizing. For the $5 mil- would have been nice to sleep over at a hotel lion business cited in Doherty's example, a because we could have used the rest, but the hotels were too expensive, so we went ramp to remove the barrier of four steps home the same day even though we were is indeed "readily achievable," meaning the very tired. 119 owner can comply with little difficulty or expense. Furthermore, the carefully crafted Except for the planning these crusades re- language of the legislation, characterized by quired, the disability community by and Doherty as ambiguous, is clear-cut though large formed an ad hoc, loosely-organized flexible enough, in fact, to suit the great army committed to the passage of the ADA. variety of situations to which it is applied, from a multinational corporation to a small business. Backlash James Bovard, in his American Spectator piece "The Lame Game," denigrates the Like other civil rights legislation pertain- ADA by referring to a litany of preposter- ing to discrimination because of race or ous employment lawsuits, often without THE AMERICANS WITH DISABILITIES ACT I07 indicating their final disposition. 121 Many that people with disabilities are treated of these cases, such as the one involv- equitably in employment. 125 ing a guidance counselor arrested for co- Demonstrating how employers evade the caine possession who claimed ADA protec- ADA, Janofsky revealed the persistence of tion, 122 were probably dismissed forthwith. disability discrimination and the resource- These unlikely suits, reiterated by ADA an- fulness of those who practice it. The poor tagonists, "aren't typical, however, and in employment statistics for people with dis- most of them the plaintiff loses." Ironi- abilities prior to the ADA provide am- cally, the quote is from Doherty, one of ple evidence that bias in hiring for these the ADA's severest critics, who offers his underemployed workers was not initiated own list of ridiculous ADA employment by the ADA. On the contrary, unfair em- cases. ployment procedures, such as the one de- Early in his July 19, 1996, ADA segment scribed by Janofsky, were the reasons an on ABC's "20/20" television program, John ADA was required. Stossel resurrected the inventory of fool- Stossel also criticized the ADA because ish ADA employment complaints. Stossel's "most of the complaints are not coming failure to air any portion of a half-hour from the blind or people who are paralyzed. videotaped interview with a prominent dis- They're coming from people with sore backs ability rights attorney, James Weisman, on or stress-related complaints." Stossel's anal- a March 12, 1993, "20/20" segment involv- ysis fails to consider the difference between ing an ADA issue lends credence to Dart's visible and invisible disabilities. Since peo- doubts about Stossel's evenhandedness re- ple with visible disabilities are much more garding the ADA debate. Dart questioned likely to be rejected when seeking employ- Stossel's impartiality when the television ment than people with invisible disabilities, commentator turned down offers to have the workforce includes many more individ- disability advocates appear on the July I9 uals with sore backs or stress problems than program." with visual or motor impairments. Employ- Claiming that the ADA has "employers ees with disabilities can file ADA complaints running scared," Stossel offered his reason much more easily than unsuccessful job ap- for the supposed failure of the employment plicants with disabilities, as Janofsky's de- title, Title I, of the ADA: piction of employers' circumvention of the law so effectively illustrates. They [employers] fear any disabled person could tie them into knots, that if they hire Furthermore, Stossel reveals the com- disabled people, they might never be able monly held misconception that the ADA to fire them. As a result, we're told many was specifically designed only for people employers are now so fearful they simply with ostensible disabilities, when in fact the avoid the disabled. After interviewing for the definition of disability includes hidden as job, a disabled person's simply told, "Sorry, well as obvious disabilities. For example, someone else was better qualified." Lawyers is an individual with a severe, though not like [Julie] Janofsky who represents many companies say it goes on all the time. 124 immediately discernible, heart condition or psychiatric disability less disabled than a Rather than an argument against the ADA, person who is clearly blind? Yet as Stos- Stossel's explanation could be used to make sel demonstrates, too often only disabilities the case for increased enforcement of the that are observable are deemed legitimate legislation or, as some disability advocates while conditions that are not overtly evi- contend, for affirmative action to ensure dent are considered spurious. As noted in I08 CHAPTER SIX an EEOC report, "Given that there are many dations" provided by Sears, 99 percent re- more people with hidden disabilities than quired little or no cost. As Reno and Thorn- there are people with visible disabilities," it burgh agree, "Most people in the business is not surprising that so many ADA employ- community understand that the ADA has ment cases involve these often impercepti- been good for business; it has expanded ble disabilities. 126 the markets served by most establishments Using one specific anecdote as evidence, and opened the doors to productive peo- Stossel suggests that the "reasonable ac- ple with disabilities, all at a minimal cost." commodations" required by the ADA to en- Major industries have been especially recep- able people with disabilities to be employed tive to the disability population; in fact, often cost "a fortune." Janet Reno, Attor- the probability of people with disabilities ney General in the Clinton administration, being hired increases with the size of the and Dick Thornburgh, Attorney General in company.¹²⁹ the Bush administration, however, disagree. The impression given by commentators Reflecting the population at large, both at- such as Doherty, Bovard, and Stossel-and torneys general have had intimate experi- in books like Philip K. Howard's The Death ence with disability; Reno has Parkinson's of Common Sense, and Walter Olson's The disease, and Thornburgh has a child with Excuse Factory: How Employment Law Is Para- a developmental disability. Unequivocally, lyzing the American Workplace130-is that the Reno and Thornburgh jointly dispute those ADA generates a deluge of frivolous ADA they label "journalistic naysayers" who have lawsuits. Yet, Reno and Thornburgh agree charged that "the law imposes unreasonable that "one thing is clear: The ADA has not burdens": resulted in a flood of litigation." The Justice Department reported in 1995 that "litiga- They [these journalists] mischaracterize the tion under the [ADA] Act has been rare. The ADA by implying that it requires businesses to spend outrageous sums removing barriers Justice Department and the Equal Employ- almost overnight. These criticisms miss ment Opportunity Commission together the mark. The ADA's requirements provide have averaged fewer than twenty-five suits flexibility to business and government. The during each of the past five years."131 James ADA strikes a carefully calibrated balance Raggio, general counsel of the Access Board, between the rights of people with disabilities observed, "Of course you can point to cases and the legitimate concerns of business stretching the limits of the ADA. Lawsuits and government, including costs. It merely codifies common sense. 127 on the fringes are to be expected. That's the way the system works. But the overwhelm- In fact, in Transcending Compliance: 1996 ing majority of the cases are valid. They Follow-up Report on Sears, Roebuck and Com- concern a legitimate issue, and they deserve pany (hereafter Sears Report), Peter Blanck to be aired. "132 Bernadette B. Wilson, EEOC states that the average cost of providing supervising program analyst, responds to workplace accommodations at Sears be- criticism of the ADA: tween 1993 and 1995 was $45, less than half of the $121-dollar average cost from 1978 And contrary to some widely circulated to 1992, as reported in the 1994 study.¹²⁸ misinformation that this agency [EEOC] is overrun with frivolous ADA charges, no-cause The Sears Report, sponsored by the Annen- findings are rendered in far fewer instances berg Washington program where economist with ADA cases than they are with our other Blanck is a senior fellow, notes that of statutes. And while monetary awards for cases more than seventy "reasonable accommo- resolved under the Civil Rights Act and our THE AMERICANS WITH DISABILITIES ACT 109 other statutes declined between 1994 and Every American's Insurance Policy 1995, monetary awards increased for those who file ADA charges. This hardly represents Too frequently, the public conceives of the the profile of a frivolous case load. 133 ADA as a law serving a special minority In his introductory remarks to the March whose concerns are separate and distinct 12, 1996, Commissioners' Meeting of the from the interests of the general popula- EEOC, chairman Gilbert F. Casellas relates tion. People in the disability community the story of a Rapid City Journal columnist, describe nondisabled individuals as "tem- Richard Kahler, who gained an understand- porarily able bodied" or "TABs" as a means ing of the reality of the ADA after first be- of fostering the recognition that, rather ing swayed by the myths. In his April 1995 than an anomaly, disability is a natural as- article, Kahler attacked the ADA as "a re- pect of the human condition. As people age, curring nightmare that just keeps getting they are likely to experience increasing de- worse." After receiving information from grees of disability, first in their parents and people with disabilities and their advocates, then in themselves. however, he admitted that he "blew it." In a Clay Haughton, director for Civilian September 1995 piece, he quoted Justin Dart Equal Opportunity for the Defense Depart- of Justice For All: "It's a fallacy that the ADA ment, addressed this issue: costs too much. It's discrimination that costs too much. We can't afford not to get No one is immune to developing a disability, and almost no one, regardless of race, gender, the disabled into the work force so they can religion, or economic status, will go through lead independent and productive lives."134 life without suffering from some form of Although American business has been physical or mental impairment. It's truly the presented as viewing the ADA unfavorably equal opportunity situation, and those of by news commentators, on television and us who are disabled are a constant visual in print, 135 a July 2, 1995, Harris Poll offers a reminder of the frailty of each member of the different picture. The poll reported that 80 human race. And so accepting this possibility and adjusting to disabilities, those are matters percent of executives of small, medium, and that must concern all of us.¹³⁶ large corporations indicated that the cost of accommodating people with disabilities has Becky Ogle, chairperson for Justice For All, either not increased or increased only a little observes that "the ADA can be viewed as since the passage of the ADA. Moreover, an insurance policy against discrimination 66 percent stated that litigation has not that every American in this society should increased since the ADA while 14 percent cherish and protect as a matter of enlight- said that litigation has increased only a ened self interest."137 little. Overall, 82 percent of these executives concluded that the ADA is worth the cost of implementation. Chapter Seven Access to Jobs and Health Care UNLIKE OTHER TARGETS OF job discrim- disabilities will be employable. The growing ination, people with disabilities have an ob- disability and aging population-a conse- stacle embedded in the language that de- quence of advances in medicine-presents a fines them. The term "disability" has vary- compelling economic argument for encour- ing meaning in at least three different con- aging these people to become job holders. texts: In the Workers' Compensation pro- This rationale played a significant role in gram "disability means the damages that the enactment of the 1990 ADA, a law focus- one person collects from another as a result ing heavily on employment. Eleven years be- of an insult or injury. In the Social Secu- fore the ADA was passed, disability advocate rity Disability Insurance program, disability Frank Bowe stated that it is better for people refers to a condition that links ill health and with disabilities, as well as for the nation, if unemployment." And in the context of civil they are working, supporting their families, rights laws, "disability" is linked to discrimi- and contributing to the community rather nation. Disability advocates believe that the than being dependent; it is better if they are Supreme Court misinterpreted the applica- taxpayers rather than tax users.³ tion of the Americans with Disabilities Act in three 1999 employment cases, treating them as if they pertained to benefits-the Employment Discrimination first two definitions-rather than, more ap- propriately, relating the claims to the third The 1998 study by Louis Harris and As- definition-discrimination² Since disabil- sociates for the National Organization on ity is commonly associated with disability Disability (NOD) reveals that 79 percent of benefits-implying the inability to work- the nondisabled population of working age employment for people with disabilities ap- are employed, compared to only 29 percent pears to be a contradiction. of people with disabilities, a difference of On the contrary, with modern technol- 50 percentage points.4 NOD president Alan ogy such as computers, motorized wheel- Reich comments, "At a time when the U.S. chairs, teletypewriters, and Kurzweil read- unemployment rate is at an historic low and ers, an increasing number of people with there is a crying need for workers, it is as- ACCESS TO JOBS AND HEALTH CARE III tounding to learn that the employment gap work. So I couldn't even get there for the remains so wide." Although the primary in- tryout. And without a job, I couldn't buy a tention of the ADA was to increase employ- car. And without a car, I couldn't work.8 ment opportunities for people with disabil- Moreover, women as well as racial and ities, "at least 85 percent of the charges are ethnic minorities with disabilities confront filed by those who are already employed."5 dual employment discrimination. Rebecca The difficulty in proving employment dis- Ogle of Justice For All notes that "it's a crimination is compounded by the inability ceiling for all women; it's a double ceiling of rejected applicants with disabilities to for women with disabilities."⁹ While Com- compare their qualifications with those of missioner Joyce E. Tucker of the EEOC refers people who are hired. to the need for her agency to focus its out- Despite being a highly regarded graduate reach efforts on minorities with disabilities with a master's of science in social work seeking jobs, 10 EEOC Commissioner Paul S. from Columbia University, Caren Potoker- Miller compares racial prejudice to disabil- who uses a scooter because of rheumatoid ity discrimination: arthritis-required almost two years and nearly fifty interviews to get a job appro- In my mind, there is no difference between being asked to be sent to segregated schools priate for her qualifications.6 Although her because you are black or being sent to fluency in Spanish should have made her colonies because you have mental retardation especially employable in New York City, she and society believes that you will be better "faced blatant discrimination" in her inter- off with your own kind. There's no difference views as she was asked insulting questions, between being asked to leave a restaurant such as "Why are you in that thing?" and because you are black or because you use "What is wrong with you?" Potoker still be- a wheelchair and you're considered a fire hazard. There's no difference between being lieves that she was "lucky" to finally get a denied the right to vote because you are black position: "It just happened that the agency or because of an inaccessible polling place. that hired me was opened to employing peo- And yes, there's no difference between being ple with disabilities." denied the right to a job or to a promotion Most Americans with disabilities who because you are black or because you are blind are employed hold only marginal jobs, and or deaf. All of it's discrimination. No such many of those who are unemployed are so thing as separate but equal.¹¹ discouraged that they are not even look- ing for work.⁷ The experience of wheelchair Affirmative Action user Raphael Nisan-a forty-three-year-old immigrant from Baku, Azerbaijan, who is While the Rehabilitation Act of 1973 requires seeking American citizenship and employ- affirmative action in federal employment ment-illustrates how the system some- and federal contracts, the ADA's omission times places impediments in the path of of an affirmative action requirement has even the most ambitious and determined resulted in the failure of the private sec- job-seeker with a disability: tor to seriously pursue qualified workers with disabilities. Eastern Paralyzed Veterans I interviewed at at least a dozen places. I had my accounting certificate, plus all the years of Association attorney James Weisman asserts work experience in Baku. But nobody would that although preferences were awarded to hire me. One place was willing to give me a veterans with disabilities for service to the shot, but I couldn't get Access-A-Ride to give nation, preferences given to civilians with me a subscription for van service to and from disabilities have been tainted: II2 CHAPTER SEVEN For example, the newsdealer concessions John Wingate, former director of the in federal buildings granted to people with International Center for the Disabled, ar- disabilities was patronizing, protectionist, gues that members of a group that have and separatist, confirming rather than been discriminated against have never ob- countering the negative stereotypes concerning disability. This kind of tained their fair share of employment by employment focused the public's attention using nondiscrimination laws only.14 These on the disability rather than on the laws, he observes, are effective in address- capability of the worker. In the old days, ing discrimination against people already people with disabilities did not have employed, not against job seekers. Anne access to education or employment. The Emerman, a quadriplegic wheelchair user 1990s generation has the qualifications and former director of the Mayor's Of- to be competitive with the nondisabled population. Society's consciousness is fice for People with Disabilities, is un- changing. The expectation of the disability equivocal about the pressure required to population is also changing. Then too, if prod business to employ qualified people the general public has encountered people with disabilities: "What is needed is af- with disabilities in classrooms, in public firmative action that includes goals and transportation, in restaurants and shops, timetables,¹⁵ as well as a vigorous search in theaters and stadiums, in factories for competent people with disabilities to and offices, the anti-disability bias will fade away.¹² fill positions for which they are appropri- ate. More than three-quarters of the disabil- "If you build it accessible, they will come," ity population between the ages of sixteen comments Terence Moakley, associate exec- and sixty-four, able and eager to work, are utive director of Eastern Paralyzed Veter- unemployed."16 ans Association.¹³ Moakley's point is that if public places are barrier-free, people with disabilities will participate in every aspect Disability Employment in of social life as employees and employers, Corporate America students, consumers, spectators, and travel- ers. Moakley, who unlike Weisman, is both The 1994 Sears Report of the Annenberg a veteran and a wheelchair user, is skep- Washington program examining the em- tical, however, of accessibility and integra- ployment practices of Sears Roebuck and tion, alone, serving as the solution to disabil- Company, before and after the passage of ity discrimination, especially with regard to the ADA, determined that the impact of the employment: law on American business is "evolutionary, not revolutionary."¹⁷ The appraisal of the For people with disabilities, there are other disincentives to getting a job besides physical effectiveness of the ADA by Sears employees barriers. When they get jobs, they often lose who participated in the Sears Report varied health systems supports such as Medicaid, greatly. Blind computer programmer Don Medicare, and personal attendant services. Mott comments, "I don't think [the ADA] And people who own small businesses are so had any impact on Sears. The company was misinformed that they are afraid they'll go out doing these things for people with disabil- of business because of the cost of providing ities before the ADA." Another blind com- accommodations and health insurance for disabled workers. Besides, without some kind puter programmer, Alan Sprecher, observes, of pressure, it'll be hard to persuade corporate "Most people don't know the requirements America that people with disabilities should or implication of the law until someone be hired because they can do the job. makes an issue of it." ACCESS TO JOBS AND HEALTH CARE II3 Yet another blind Sears employee, import States cites the federal definition of "devel- manager Brad Shorser, has a different per- opmental disability" as spective on the ADA's influence: "The ADA has helped raise the consciousness of hiring any severe chronic disability attributable managers, who now seem more willing to to a mental or physical impairment, or combination thereof, that is manifested accept people with disabilities. But it's not before the age of twenty-two years, is likely just the ADA. It's everything that led up to to continue indefinitely, and will result in it, including the civil rights legislation of substantial limitation in function in three the 1960s. Combined with Sears's policies, or more of the following areas: I) self-care, 2) the ADA is helping to break down psycho- receptive and expressive language, 3) learning, logical barriers about people with disabili- 4) mobility, 5) self-direction, 6) capacity ties." An administrative assistant who is vi- for independent language, 7) economic self- sufficiency, and 8) necessity for special services sually impaired agrees: "The ADA is helping that are of extended duration.¹ 18 people get information. Now we're not as afraid. There's somewhere to go." Tony Nor- Although in most localities the self-advo- ris, a quadriplegic footwear department ex- cacy group for people with developmental ecutive, expresses a similar view: "The ADA disabilities is called People First, the na- has been good in awakening the public to tional group is called Self Advocates Be- people with disabilities." coming Empowered (SABE). SABE defines The Sears Report refers, however, to im- "self-advocacy" as "teaching people with a pediments to the employment of qualified disability how to advocate for themselves people with disabilities such as the "Linger- and to learn how to speak out for what ing prejudices [by employers] about hidden they believe in. It teaches us [people with cognitive and mental disabilities." Further- developmental disabilities] how to make de- more, "even among people with disabilities cisions and choices that affect our lives so who have achieved integration into the work that we can become more independent. It force, a perceived glass ceiling limits their also teaches us about our rights, but along career advancement, and [their] sense of with learning our rights, we learn our re- separateness is difficult [for them] to over- sponsibilities." come." Sprecher reveals, "I don't know if I've Evolving in the 1970s out of community ever been or ever will be part of the gang." recreation clubs, the self-advocacy move- Echoing this feeling, Shorser remarks, "I ment was supported by nondisabled staff don't expect we'll ever get to the point where but organized and run by people with devel- prejudice against people with disabilities opmental disabilities. Beginning as a local disappears completely." grass-roots movement, by 1990 there were 380 groups of people with developmental disabilities in the United States and British Employment of People with Columbia. Groups such as these and their Developmental Disabilities advocates have been pressuring the Justice Department to use the 1980 Civil Rights Inspired by the 1960s civil rights struggle of Institutionalized Persons Act more effec- and the 1970S Independent Living Move- tively to protect the rights of people with ment, self-advocacy fostered independent cognitive disabilities in institutions.¹⁹ living and employment for people with The movement has been encouraged by developmental disabilities. A demographic the growing number of those with develop- study of self-advocacy groups in the United mental disabilities living in group homes, II4 CHAPTER SEVEN an alternative to institutional care. During really need. They are often supported by the period from 1977 to 1992, the number family and friends, and when necessary, of people in group homes increased dra- even a fiscal intermediary. I also work to matically from 14 to 52 percent. The na- get these consumers to be on boards of tional quarterly magazine Community Advo- directors of agencies that serve people with developmental disabilities so that they have cacy Press: People with Developmental Disabil- some say in the policies and procedures ities Speak Out for What They Believe helps that affect them. People with developmental unify self-advocacy groups and supports disabilities may learn in different ways members in their efforts to live indepen- than others, or they may be slower than dently in the community. For example, the others, but they have capabilities, and many Fall 1997 issue was devoted to the skills can work. necessary for people with developmental Supporting Pacht's assertion, the employ- disabilities to secure and maintain jobs, ment of people with developmental dis- as well as the self-esteem that emanates abilities (who are consumers of services from work. of state agencies assisting this population) Harvey Pacht-who serves as both direc- increased over 300 percent from 1988 to tor of public education and group support 1996.²³ for the Self-Advocacy Association of New York State and as New York City regional grass-roots organizer-describes how he and Employment of People with Psychiatric his wife have worked to achieve indepen- Disabilities dence: My wife, Ethel, was born brain-damaged On April 29, 1997, EEOC released the EEOC because her birth mother, who died during Enforcement Guidance: The Americans with Dis- the delivery, was not getting enough oxygen. abilities Act and Psychiatric Disabilities, explain- Several years after we were married, we ing the ADA as it pertains to employees with adopted a one-month-old Down syndrome psychiatric disabilities.²⁴ EEOC chairman baby girl, Samantha Jean. Now that she's in Gilbert F. Casellas describes the document: a special education class in public school, an aide comes in the morning to prepare her "It provides practical instruction to employ- for school and get her on the bus and in the ers and persons with psychiatric disabilities afternoon to take her off the bus and care for on their respective rights and responsibili- her until we get home. We both work; I do ties."25 The EEOC Enforcement Guidance indi- my advocacy work, and my wife works in a cates that employers may not discriminate sheltered workshop. So we're able to support against qualified workers with psychiatric ourselves in our own condominium.²¹ disabilities, even those who are taking med- Pacht points out that the Self-Advocacy ication to control their impairments.²⁶ Al- Association of New York State was founded though mandated to make reasonable ac- and named by Bernard Carabello, a former commodations for employees with psychi- "inmate," who in 1972 left Willowbrook, the atric disabilities, employers are restricted institution closed in 1987 as a result of the from asking job applicants if they have a Geraldo Rivera exposé.2² Pacht continues: history of psychiatric disabilities. Yet for workers with psychiatric disabilities, as for My job is to encourage the formation of self-advocacy groups all over New York State employees with physical impairments, em- so that consumers of services for people ployers are not required to diminish work- with developmental disabilities, themselves, place performance standards in order to determine what programs and services they comply with the ADA. According to the ACCESS TO JOBS AND HEALTH CARE II5 EEOC Enforcement Guidance, however, "rules ing that the claimant has a 'substantially of conduct that are not 'job-related and con- limiting impairment." sistent with business necessity" may not According to the EEOC Enforcement Guid- be enforced. ance, "Between July 26, 1992, and September The EEOC Enforcement Guidance seeks to 30, 1996, approximately 12.7 percent of ADA dispel "myths, fears and stereotypes" about charges filed with the EEOC were based on psychiatric disabilities such as "anxiety dis- emotional or psychiatric impairment." Of orders, depression, bipolar disorder (manic all 72,687 complaints filed with the EEOC depression), [and] schizophrenia." Plain- under the ADA in these four years, 9,216 have tiffs' lawyers observe that "many people alleged discrimination resulting from a psy- with emotional problems are winning im- chiatric disability, the largest source of com- portant concessions from their employers plaints after back problems.³² By 1997 the in out-of-court settlements, including un- number of psychiatric disability claims in- paid leaves, modified hours, job transfers, creased to 15.3 percent, the largest single cat- and in some cases, five- and six-figure cash egory of all disability claims, outnumbering payments. But when negotiations fail, liti- those pertaining to HIV, cancer, substance gation is risky."2⁸ Although the EEOC En- abuse, vision, hearing, and diabetes-related forcement Guidance indicates that people are disabilities combined.³³ "The National In- disabled even if their symptoms disappear stitute of Mental Health says one in ten when they take medication, trial courts Americans experiences some disability from have determined that people did not have a a diagnosable mental illness in the course of psychiatric disability if medication relieved a year." their symptoms. Caught in a Catch-22 situa- Two U.S. senators who acknowledge that tion, employees with psychiatric disabilities they have family members who have had have limited recourse under the employ- psychiatric disabilities, Pete Domenici (R- ment discrimination laws because if their N.M.) and Paul Wellstone (D-Minn.), suc- impairment is treated successfully, they are cessfully sponsored legislation designed to considered nondisabled under the ADA; establish parity between psychiatric and yet if their symptoms persist, they may be physical disabilities. 34 Effective January I, considered unable to perform the essential 1998, this law requires "that insurers set the function of the job. lifetime and annual reimbursement caps as While companies have won 92 percent of high for psychiatric disability as for phys- all final court decisions from 1992 through ical illness." Alphonso V. Guida, Jr., vice 1997 under the ADA, companies have won president of the National Mental Health even more often for psychiatric disability Association and an advocate for people with cases.29 The Mental and Physical Disability psychiatric disorders, asserts, however, that Law Reporter found that by June 1998, al- "many insurers and employers are taking though "it has been employers who have steps to bypass the federal law, changing the complained most of unfair treatment un- structure of their benefits to impose dis- der the ADA, the facts strongly suggest the criminatory inpatient and outpatient visit opposite: employees are treated unfairly un- limits in place of previous spending caps." der the Act. "30 The EEOC recommends new Ronald E. Bachman, actuary at the account- legislation addressing the Catch-22 problem ing firm PricewaterhouseCoopers, observes in order to "eliminate some of the more pro- that "the net impact [of day and visit limits] cedural and substantial roadblocks [to em- in these cases is to have less mental health ployees winning ADA cases], such as show- coverage." II6 CHAPTER SEVEN Contrary to comments of Dr. Sally L. Sa- notes that "the stigma attached to psy- tel, psychiatrist and lecturer at Yale's School chiatric disabilities" precludes those with of Medicine, the EEOC Enforcement Guid- such disabilities from using the EEOC En- ance is not "sending dysfunctional people forcement Guidance as an excuse for absen- the message that the world-or in this case teeism: "I don't see people lining up to the workplace-revolves around them."³⁶ In say, 'I have a mental illness. I need a day fact, Satel's misrepresentation of the EEOC off from work."³⁸ Adhering to the EEOC Enforcement Guidance reveals that she does Enforcement Guidance serves not only em- not recognize the essence of Title I, the em- ployees with psychiatric disabilities, Kramer ployment section of the ADA that protects points out, but also employers: "Some of only a qualified individual with a disabil- my sicker patients are workers of extraor- ity who is capable of performing the es- dinary dedication, who, for reasons related sential function of the job. Instead, Satel to their illness-compulsiveness and obses- treats the EEOC Enforcement Guidance as if sional guilt-work scrupulously at tasks it interfered with the appropriate demands others avoid; smart employers do accom- of the workplace that provide limits for modate their needs.' Commenting on the potentially unruly workers with psychiatric value of diverse perspectives in the gene disabilities. pool, Kramer indicates that obsessive peo- Psychiatric disabilities are not confined ple are thorough, depressed people make to the prototype of the undisciplined em- good prognosticators, and artists have a ployee she refers to in her article. Moreover, tendency to mania. Referring to Abraham the purpose of the law is not rehabilita- Lincoln, who was "recurrently depressed," tion of people with psychiatric disabilities. Kramer observes that "those who suffer Rather, the law is intended to protect these mental illness included the most productive people from discrimination based solely on members of society." the stigma associated with their disabili- People with invisible disabilities, includ- ties.³⁷ Ostensibly supporting workers with ing psychiatric impairments, do not have to psychiatric disabilities, Satel fears that "we inform employers of their conditions un- can expect waves of backlash discrimination less they are seeking reasonable accommo- as employers become skittish about hiring dations. A person requesting an accom- a class of people they'll never be able to modation, however, may be asked to sub- fire. Co-workers' resentment will build as mit documentation-which can be a let- the stereotypical behaviors of the mentally ter from a physician, psychologist, or other ill go unchecked." Satel's concern for the specialist-verifying the disability and out- consequences of the EEOC Enforcement Guid- lining the necessary accommodations. The ance for people with psychiatric disabilities employer is permitted to choose the specific could have been expressed for the extension accommodation so long as it is effective of civil rights to any demographic group- for accessing the job. The EEOC Enforcement racial minorities, women, as well as people Guidance mandates that "Employers must with physical disabilities. keep all information [even when offered vol- Although psychiatrists Satel and Dr. Pe- untarily] concerning the medical condition ter D. Kramer agree that work is vital or history of applicants or employees, in- for the well-being of people with psychi- cluding information about psychiatric dis- atric disabilities, they disagree, however, ability, confidential under the ADA. Em- about the future medical and social effects ployers must collect and maintain such in- of the EEOC Enforcement Guidance. Kramer formation on separate forms and in sepa- ACCESS TO JOBS AND HEALTH CARE II7 rate medical files, apart from the usual per- Although in Fall 1997 the U.S. Justice sonnel files."⁴¹ Department described this incarceration of Claudia Center, attorney for the San people with psychiatric disabilities as un- Francisco Employment Law Center, asserts constitutional, this trend has been increas- that "the same job-based analysis that gov- ing: "On any day, almost two hundred thou- erns the application of the [ADA] statute sand people behind bars-more than one in to physical disabilities must apply to psy- ten of the total-are known to suffer from chiatric disabilities. The appropriate test schizophrenia, manic depression, or major [for employability] is whether the conduct depression, the three most severe mental caused by a psychiatric disability renders illnesses. The rate is four times that in the that person unqualified to perform the es- general population. And there is evidence, sential job functions of a particular po- particularly with juveniles, that the num- sition. "42 Unlike the forms of "reasonable bers in jail are growing." Sheldon Green- accommodations" for people with physi- berg, director of Johns Hopkins University's cal disabilities, however, Center indicates Police Executive Leadership Program in Bal- that people with psychiatric disabilities timore, says that it is unconscionable that may need different accommodations such police get hours of executive training for as "tailored shifts and schedules, leaves situations they seldom encounter involving of absence, and adjustments to job du- hostages, terrorists, and riots, and only a ties and the working environment," as well few hours of technical training on handling as employer education regarding these people they come across often-people with requirements. psychiatric disabilities.⁴⁴ Advocates for people with psychiatric dis- abilities compare the criminalization of this The Criminalization of People with population since the 1960s to the dehu- Psychiatric Disabilities manizing treatment of people with this dis- ability in the nineteenth century. As noted As a result of the mass closing of public in the New York Times, "Mental hospitals, hospitals for people with psychiatric dis- or asylums, grew out of a crusade in the abilities beginning in the 1960s-in part fos- 1840s by Dorothea Dix, the Boston re- tered by the development of new antipsy- former, who warned that 'insane persons' chotic drugs-jails and prisons became the were being confined in 'cages, closets, cel- nation's new hospitals for people with psy- lars, stalls, pens: chained, naked, beaten chiatric disabilities. Laurie M. Flynn, exec- with rods, and lashed into obedience. "45 utive director of the National Alliance for One of the main reasons that the discharge the Mentally Ill-an advocacy group of rela- of people with psychiatric disabilities from tives and friends of people with psychiatric hospitals has resulted in such disaster is disabilities-emphasizes, "Part of mental ill- that the plan was not carried out as de- ness in America now is that you are going to signed. Dr. Richard Lamb, one of the orig- get arrested. What experts call the criminal- inators of the 1960s plan, remembers that ization of the mentally ill has grown as an local governments were expected to pro- issue as the nation's inmate population has vide community-based settings where dis- exploded and as corrections officials and charged patients could continue their treat- families of the emotionally disturbed have ment, including medication and therapy. become alarmed by the problems posed by "But," Lamb notes, "largely for economic having the mentally ill behind bars."43 reasons, this was never done." Ironically, II8 CHAPTER SEVEN community clinics and group homes with perately sought.5¹ Moreover, many of the live-in counselors, rather than hospitals or bizarre symptoms of the Capitol gunman, prisons, are the most effective and economi- Russell Weston Jr., "also characterize the cal way of providing services for people with paranoid schizophrenia of John Nash, the psychiatric disabilities.⁴⁶ brilliant, nonviolent Princeton mathemati- When two Capitol police officers were cian,"⁵² the subject of Sylvia Naser's book, A fatally shot in Washington, D.C., on July Beautiful Mind, about the winner of the 1994 24, 1998, by an individual who had been Nobel Prize in Economics. diagnosed as paranoid schizophrenic, New York Times op-ed page columnist Frank Rich stated that "no one said the obvious: It Different Approaches to Psychiatric is the gaping cracks in American mental- Disabilities health care that most clearly delivered Russell Weston Jr. [the gunman] to his The consumer mental health movement rendezvous with history."⁴⁷ Rich added, "A originated as early as 1908 with the estab- comprehensive system of mental-health ser- lishment of the Connecticut Society for vices, including support for parents with Mental Hygiene (renamed in 1909 the Na- sick adult children who refuse treatment, tional Committee for Mental Hygiene) by doesn't exist. If it had, the Westons might Clifford W. Beers, author of Mind That have had more success in rescuing their Found Itself: An Autobiography (1908), a mem- son-as might the equally loving family oir chronicling his harrowing personal ex- of Michael Lauder, the Yale Law School periences in a succession of mental insti- prodigy charged June 1998] with murdering tutions.⁵³ The federal Census Bureau re- his fiancée." While the nation spent one- quested in 1923 that Beers and his associates third less for those with serious psychiatric gather data concerning various state men- disabilities in 1998 than it did in the 1950s, tal institutions. Besides developing "model and well over three times as many people commitment laws" that were adopted by with these disabilities are in jails and pris- several states in the 1920S, the National ons than in psychiatric facilities,48 "we have Committee for Mental Hygiene adminis- the science to treat mental illness at a suc- tered studies that altered the treatment of cess rate comparable to physical illness."⁴ people with psychiatric disabilities. Although the public usually hears about In 1950, the National Association of Men- schizophrenia, which affects about 2.7 mil- tal Health (by 1979 known as the Na- lion Americans, "in the context of lurid tional Mental Health Association): was es- headlines," like those that followed Andrew tablished, combining three organizations: Goldstein's arrest and later conviction for the National Committee for Mental Hy- pushing Kendra Webdale off a subway plat- giene, the National Mental Health Foun- form to her death,50 most people with psy- dation, and the Psychiatric Foundation (a chiatric disabilities are not violent. Even for fund-raising organization). The National Goldstein, whose actions seemed to sup- Mental Health Foundation was formed in port the arguments for reinstitutionaliza- the early 1940s by conscientious objectors to tion and involuntary treatment of people World War II-working in psychiatric hospi- with serious psychiatric disabilities, the real tals in place of military service-who were problem was that the treatment he repeat- appalled by the conditions in these hos- edly begged for was in such short supply pitals. The National Mental Health Asso- that he was unable to get the help he des- ciation (NMHA) was instrumental in the ACCESS TO JOBS AND HEALTH CARE II9 passage of the 1980 Mental Health Sys- tions. Judi Chamberlin, a former psychi- tems Act-encouraging the development atric patient who refers to people like her- of America's Community Mental Health self as "psychiatric survivors," insists, "The Centers-as well as the 1990 Americans stereotypes, of course, have little to do with with Disabilities Act and the 1996 Mental the facts. Most people with psychiatric dis- Health Parity Act. The NMHA argues that abilities are living successfully in the com- improved access to and quality of men- munity, raising families, working, going to tal health services will markedly decrease school and, in general, leading essentially the cost to society of medical care, welfare, 'normal' lives. A study published in 1998 homelessness, prison, and reduced human in the Archives of General Psychiatry finds potential in school and the workplace.⁵⁴ that most patients discharged from psychi- In the early 1970s, about the same time as atric hospitals pose no greater threat of vio- the rights movement of people with phys- lence to the community than similar people ical disabilities was emerging, the rights without psychiatric disabilities. 60 The study, movement of people with psychiatric dis- which includes those with psychiatric dis- abilities expanded as consumers organized abilities such as depression, schizophrenia, in such cities as New York, Boston, and Van- and bipolar illness, reveals that the signif- couver. 55 The mental health system was slow icant factor in predicting whether or not to respond to the lack of recourse for many individuals are at risk for committing vi- consumers forced into compliance without olence to others is if these individuals are due process of law-one result of the closing alcoholics or drug abusers, not if they have of mental hospitals and the development psychiatric disabilities. and use of psychotropic medications. 56 Too Although some "psychiatric survivors" often isolated from the wider society and are unaware of the ADA or the law's applica- ignored even by the disability rights move- tion to them, others were heartened by the ment, former psychiatric patients organized firm stand of disability activists who refused around issues of patients rights,⁵ stressing to weaken the legislation by excluding peo- consumers using their experience with the ple with psychiatric disabilities. By the late health care system to help other consumers 1990S, however, "psychiatric survivors" were with issues of daily life and empowerment expressing concern about the meaning of through mutual support and self-help.58 "parity," with respect to insurance, between While the New York City group became people with psychiatric disabilities and peo- known in the 1970s as the Mental Patients ple with physical disabilities. As Chamberlin Liberation Project, similar organizations in asserts, "Without parity in terms of rights, other cities, independent of each other, were parity in terms of [insurance] payment can also demanding that their members have a result in people being coerced into treat- voice in their own psychiatric treatment as ment that they find totally unacceptable. If they struggled against what they considered people with psychiatric disabilities get their "a helping system that did things against rights, everything else they are struggling their will, things like forced institutional- for will follow." ization, drugging, and electric shock." Yet Richard Greer, president of the Vir- Because of the negative stereotypes, the ginia Alliance for the Mentally Ill and an stigmatizing and discrimination, former advocate who describes his son as "mentally psychiatric patients frequently hide their ill," not only uses language different from impairments, thus depriving themselves of Chamberlin's, but also approaches this dis- peer support and reasonable accommoda- ability from a perspective different from I20 CHAPTER SEVEN those who refer to themselves as "psychi- run program, the Mental Health Voter Em- atric survivors." The fledgling National Al- powerment Project, was founded in 1994 liance for the Mentally Ill opened its first by Ken Steele, who, after controlling his office in the District of Columbia in 1979.61 schizophrenia with medication, devised his In the 1990s the National Alliance nur- own treatment-advocacy.⁶ By 1999, Steele's tured and supported chapters in each state Project with seventy volunteers had regis- in the country. Whereas "psychiatric sur- tered thirty-five thousand "mental health vivors" believe that the National Alliance for consumers" in the New York Metropolitan the Mentally Ill overemphasizes the biolog- area. A major aim of the project-to turn the ical basis for psychiatric disabilities, Greer forty-four million people who have experi- notes that his organization takes pride in enced "some form of mental illness" into a having encouraged research on the brain significant voting bloc-is supported by the that is useful in dealing with "mental ill- NMHA, which by 1999 sought to replicate ness."⁶² On the other hand, the NMHA deals Steele's effort nationwide.⁶⁷ with psychiatric disabilities using a bio- Nonetheless, there are significant issues psycho-social approach, thus fostering a on which the three camps agree. The combination of "consumer-focused" strate- NMHA, "psychiatric survivors," and the Na- gies appropriate to the particular needs of tional Alliance for the Mentally Ill all strive the individual. to remove the stigma-what Chamberlin While the National Alliance for the Men- prefers to call discrimination-associated tally Ill generally supports "involuntary out- with psychiatric disabilities. All are work- patient commitment" legislation enacted ing toward deinstitutionalization with re- by a majority of states, both the NMHA sources redirected so that services can be and "psychiatric survivors" fervently oppose provided in local communities. As Greer these laws. 64 Perhaps the major reason for indicates, some states, such as New Hamp- the differences in the underlying assump- shire, are better than others in moving tions of these three camps stems from the toward this model. All fear that threats to membership: the National Alliance for the the 1988 Fair Housing Amendments Act Mentally Ill is primarily made up of rel- jeopardize group homes, a way that the atives, often parents, and friends of peo- three groups strongly support for some peo- ple with "mental illness"; "psychiatric sur- ple with psychiatric disabilities to live in vivors" are people who themselves have the community.68 Yet these three advocacy experienced, or episodically experience, a groups are concerned that although many psychiatric disability; and the NMHA is people with developmental disabilities have an umbrella organization linking advo- been successfully moved out of institutional cates (including parents of young children settings into group homes of fifteen or fewer with psychiatric disabilities), consumers, residents (or into their own homes), the and providers. result of deinstitutionalizing people with Joseph Rogers, a leader in mental health psychiatric disabilities remains controver- for over fifteen years, notes that self-help- sial. Seeking to eliminate the disincentives consumer-run programs in the community to employment, members of all three camps in which people are engaged in their own approve of Social Security laws that have treatment-in combination with life sup- been rewritten so that people with dis- ports, such as housing and employment, abilities, including those with psychiatric have proven most effective for people with disabilities, are able to maintain benefits psychiatric disabilities. 65 One consumer- while earning reasonable incomes. Finally, ACCESS TO JOBS AND HEALTH CARE I2I the NMHA, "psychiatric survivors," and the who evaluates "mental health plans" for National Alliance for the Mentally Ill vigor- businesses, points out that from 1992 to 1997 ously assert that managed care companies managed care companies have made enor- generally deal ineffectively with people with mous profits from "mental health care," psychiatric disabilities. much more than from physical health care. Moreover, Wrich reveals that people in se- vere psychiatric distress, such as acute de- Mangled Care pression, not only have not gotten the im- mediate treatment they require, but even the With more than 140 million Americans delayed treatment they finally do receive is covered by some form of managed care questionable: "Anywhere from 20 percent in the event of psychiatric disability, Dr. of the time to 30 percent of the time it Harold Eist, president of the American either was not the right level of care, or if Psychiatric Association, recalls his trou- it was the right level of care, the lengths of bling conversation with an insurance com- treatment were not sufficient to take care of pany executive: the problem." I said, "Why are you [the executive] doing this [taking advantage of] the mentally ill?" A Two-Tier Health Care System He said to me, "Because they're vulnerable." It's known that if you put impediments in the way of the mentally ill, it will be Managed care organizations often operate more difficult for them to fight through in a manner that is inconsistent with the them I hear hundreds and hundreds of needs of people with disabilities, a popu- heartbreaking cases on a regular basis. And lation with lower income and greater care every time I hear of one of these cases, I VOW needs than the average person. Tending to that I will fight this scourge of managed use health services more frequently and re- care harder and harder because it's not care; it's managed cost, and as somebody quiring greater use of specialty and long- said, "mangled care" They delay access term care, people with disabilities generally to care. They don't provide sufficient care. do not fit within most "capitation payment" They throw people out of the hospital too structures,70 which are designed for average soon, people who are still very, very ill. So patients. The Journal of the American Medi- how can they possibly get people better cal Association reports that older people and quicker [as they claim]? What they try to chronically ill poor people "were more than do is put a Band-Aid on and get rid of people quicker.69 twice as likely to decline in health in an HMO as in a fee-for-service plan,"⁷¹ such as Although Keith Dixon, CEO of the Vista Medicare. Behavioral Health Plans, argues that pri- Starting in Fall 1998, people with disabil- vate managed care companies are bring- ities and older people who receive health ing needed capital and expertise to the care through Medicare were asked to choose "shambles" of a nonmanaged, "publicly tax- from a variety of new options, including tra- supported mental health system," he con- ditional Medicare, HMOs, Medical Savings cedes that "there's something inherently Accounts (MSAs), and other types of health disturbing about Wall Street investors in- plans.⁷² A study by older people and their vesting in companies whose responsibility supporters noted that "beneficiaries with is for one of the most vulnerable sectors of chronic illnesses, requiring many expensive our population." James Wrich, a consultant health care services, would be hurt by the I22 CHAPTER SEVEN MSA program because the money in the not willing to risk losing, as indicated by MSA would not cover their medical costs the fact that roughly 96 percent of physi- under the deductible." Because the vari- cians participated in the Medicare program. ety of other types of health plans-lumped Since those paying the higher fees may re- under the rubric Medicare Plus Choice-are ceive better services than Medicare patients, private, they include many financial incen- a two-tier system may be established. "In tives to reduce care, provisions that do not a two-tier system," Lani Sanjek, associate serve the needs of people with disabilities.74 executive director of New York StateWide Although the revised system was de- Senior Action Council, asks, "Would those signed to reduce federal spending on Medi- with special needs, people with disabilities, care and to save consumers money, the many of whom have very limited resources, program began precariously as insurance receive the benefits of improved technology companies decided whether or not to par- and care obtainable by the general public?" ticipate, and the government attempted to Often, people with disabilities have re- accomplish a formidable task-to educate quirements-such as durable medical equip- Medicare's thirty-nine million beneficiaries ment, assistive technology, and personal about the complicated choices available.⁷⁵ assistance-not covered by many health in- Rather than reducing federal spending, the surance plans, certainly not the managed proliferating varieties of Medicare plans in- care models that were driving medical prac- creased federal spending and presented re- tice in the United States in the 1990s. cipients with confusing choices to com- Since this health care system was set up to prehend; moreover, in 1998 over four hun- deal with acute, rather than chronic, health dred thousand Medicare beneficiaries were problems, the long-term services and sup- dropped by HMOs. At a 1998 meeting of ports essential to people with disabilities the National Bipartisan Commission on are seldom provided." For example, other the Future of Medicare, the concern of states learned from the hastily executed 1993 older people about threats to the traditional experiment when Tennessee placed all its Medicare system was demonstrated by the Medicaid recipients, all at once-including protest of dozens of members of the Gray those with special needs-into managed Panthers.⁷ Demanding that the commis- care.⁷⁸ Although the plan resulted in a major sion hold public hearings, they held up expansion of coverage to people previously signs saying, "No more Medicare cuts!" uninsured, care was disruptive for those Disability activists have raised serious who required the coordination of several questions about the real possibility of for- doctors and services-people with disabili- mally establishing a two-tier health care sys- ties and older people. tem in the country based on the economic Since HMOs tend to avoid accepting peo- level of the recipients of services. For ex- ple with disabilities because they fear they ample, the 1997 Kyl Amendment permits may be frequent users of expensive medi- doctors to charge more than the Medicare cal services, examples of people who sought rate, whatever the market will bear. The only payment for significant medical treatments consequence for these physicians would be most often involve those who were in ap- their inability to treat Medicare patients parently good health, but became seriously for two years. Before the Kyl Amendment, ill or disabled after joining an HMO. As if physicians did not accept Medicare fees, Sanjek points out, "If we look at 1995 to 1996 they were not allowed to treat Medicare Medicare data, we see that IO percent of the patients-a population that doctors were recipients used 70 percent of the medical ACCESS TO JOBS AND HEALTH CARE 123 cost. Of course, HMOs have been selecting internist who determines access to specialty their members from the 90 percent that use care, may not have the expertise to deal with only 30 percent of the cost." Sanjek offers an a specific disability nor to make judgments example of the recruitment strategies often regarding appropriate specialists. Dr. Stuart used. by HMOs to "cherry pick" those they Jamieson of the University of California San deem to be the least costly Medicare clients, Diego Medical Center observes that even people without visible disabilities: when a patient is assigned to a specialist, an HMO, in its effort to be cost-effective, An HMO invites prospective clients to a hotel "doesn't recognize that one doctor has a breakfast. After the HMO representative makes a pitch to encourage the Medicare special skill over another doctor."⁸⁰ recipients to join the HMO, those who wish to become members are invited to walk up the steps to the mezzanine to sign up. In People with Special Needs this way the HMO has ruled out people in Managed Care who have difficulty leaving their homes, traveling, or climbing steps. According to Susan Scheer of the New York City Pub- the HMO's assumptions, they've eliminated lic Advocate's office describes how work- a large percentage of potentially expensive clients. ing people with disabilities-who were in managed care because of the health plan HMOs advise people to join a plan that at their places of employment-experienced suits their present medical requirements; difficulty when they tried to obtain the yet destined to change with age, medical durable medical equipment they required.⁸¹ necessities are really unpredictable at any age. Therefore, a plan that initially may seem Three cases involved wheelchairs, two manual appropriate may be totally inadequate after and one power. All of them were in the Oxford HMO, and in each case the individual was the consumer experiences a catastrophic ill- told that the plan didn't cover wheelchairs. ness or an accident. Everyone needs lifetime When they complained and appealed, each benefits that cover a broad spectrum of un- was given some money to cover the cost of foreseen medical circumstances. Dr. Linda the wheelchair. But the one who complained Peeno, an HMO medical director from 1987 the loudest, the longest, and the best got to 1991, describes the industry's rationale for ten times as much as the person who did tending to deny doctors' requests for assis- the least complaining. This is arbitrary and capricious. tive devices such as a computerized voice machine for a young woman who was strug- Scheer refers to other durable equipment gling to deal with a rare, catastrophic brain that people with disabilities had to fight stem stroke that prevented her from speak- for, such as a commode for a quadriplegic ing.79 According to HMO logic, "She pur- and a voice synthesizer for a person who chased a Volkswagen plan and wants Cadil- had a stroke. Scheer's point is that the lac care-she will have to live with [what the services people receive are dependent on HMO labeled] her choices." the degree to which they were capable of Moreover, given the myriad disabilities contending with the HMO. To illustrate, and the potential cutting-edge treatments, Scheer describes the case of an Oxford client a particular managed care organization is who had a stroke: unlikely to include within its network of providers all the needed services. The "gate- While the man was rehabilitating in a keeper," usually a general practitioner or Staten Island facility, Oxford refused to I24 CHAPTER SEVEN continue to pay although there was no rarely notice my disability in New York City, plan in place for him to go home. After the believe it or not. I'm actually faster on these family put up a fuss, Oxford allowed him wheels. What I always like to say is 'rubber a little more rehab time. At the discharge on wheels is faster than rubber on heels." meeting, Oxford promised speech therapy, occupational therapy, and home care. But Determined to keep on working after his they didn't give anywhere near the number 1992 spinal cord injury, Wood travels around of hours they promised. They claimed it was the city welcoming tourists with disabilities, the family's responsibility to give home care. among his other responsibilities with Big In this case, as in many others, that was Apple Greeters. almost impossible. The man was about six Because these activities have taken such feet two inches, 240 pounds, and hemiplegic. a toll on his wheelchairs, Wood has re- His wife was about five feet tall, and she had multiple sclerosis. His daughter-in-law, who quested a thirty-two hundred dollar tita- was about the same size as his wife, had two nium wheelchair, stronger and more ex- small children. pensive than the two thousand dollar alu- His son, a cop who was running his father's minum wheelchair for which Oxford has business at night, was very good at fighting provided most of the cost in the past. Hav- Oxford and got the Public Advocate [office] ing no wheelchair policy until 1995, Oxford involved. But since the man who had the paid for wheelchairs on a case-by-case ba- stroke didn't have the home care he needed, he fell when he tried to get to the bathroom sis. With its new wheelchair policy, Oxford himself. So he landed back in the hospital claims that "in the spirit of human care," in rehab, and his story appeared in the the HMO "will cover wheelchairs with a New York Daily News. Then Oxford paid the contribution of five hundred dollars." Wood maximum amount for his care. After the points out, however, that five hundred dol- publicity, I received many similar complaints lars would not allow him to purchase the at my office. kind of chair he requires: "I wouldn't be able Alexander Wood, a paraplegic wheelchair to take the wheels off and put the chair in user with Big Apple Greeters-a nonprofit back of my car. I wouldn't be able to propel company geared toward boosting tourism myself. I wouldn't be able to be independent in New York City-also was refused a wheel- the way I am now." According to the HMO chair by Oxford.⁸² "Up to now, I've been Council of New York, insurance coverage of pretty successful with Oxford," Wood wheelchairs is not mandatory in New York, points out, "but I've had a strategy. I tell the New Jersey, or Connecticut. truth. When they turned down my request for a pillow to prevent pressure sores, I told them, 'IfI get pressure sores, I may need an An Arbitrary Patchwork operation and end up in the hospital. That would cost a lot more than a pillow.' Within Disability groups, older people, and doctors ten minutes I got a phone call from Oxford have begun to influence legislators and the approving my pillow." general public regarding HMOs. This shift Wood's struggle with Oxford to get an in public opinion may have been reflected appropriate wheelchair was described on in the $1.1 million awarded to Joyce Ramey- the nightly local NBC-TV news program for in a binding arbitration with her Medicare the greater New York City area. With his HMO-because as a dialysis patient, she was lightweight, easy-to-maneuver wheelchair, denied access to an HMO-approved kidney Wood explains, "I can get anywhere I need specialist for two years. 83 In 1997, twenty- to; I can compete with anyone I want; I one states passed comprehensive consumer ACCESS TO JOBS AND HEALTH CARE 125 rights bills dealing with HMO issues, such If people with life-threatening illnesses- as mandates especially beneficial to people who were turned down for treatment by with disabilities. These mandates included their health plan-lived in California rather nondiscrimination based on genetic infor- than, say, New York in 1996, their doctors mation, disability, or preexisting condition; could have appealed to "a panel of indepen- "point of service" (which means permission dent physicians with no financial stake in to go outside the HMO if the organization the decision. Had Robert Fasano been a cannot provide a needed service); and ac- resident of Oregon rather than New York ceptance of a specialist as the primary care while an early version of the Oregon Medi- physician when appropriate.84 Responding caid plan rationing health care-ultimately to the outrage of constituents (people with struck down as an ADA violation-was in disabilities-denied essential treatment by effect, the favorable outcome of his liver HMOs-and their families), the House of transplant might have been tragically al- Representatives overwhelmingly voted by tered.⁸⁹ Disabled because of a liver ailment, late 1999 to expand the rights of patients Fasano became a recipient of Medicare, a in managed care programs, including the federal health insurance system that does right to sue their insurance companies for not cover drugs. Since Medicare would not punitive damages.⁸⁵ Yet as of July 2000, pay for the expensive medication that he Congress had not enacted a patients' bill would require following his upcoming liver of rights. transplant, Fasano had to "spend down" The health care system in the United and then wait for last minute acceptance by States, still an arbitrary patchwork in flux Medicaid, which does cover medication. Ex- in the 1990s, has had devastating effects periencing one medical crisis after another, on too many people with severe illnesses. including end-stage liver disease in which As former New York Lieutenant Governor toxins distort brain functioning, Fasano for- Betsy McCaughey Ross observes: tunately received a liver transplant at New York City's Mount Sinai Hospital in 1990, For many people with serious illnesses, in time to save his life. including some forms of cancer, experimental treatments like bone marrow transplants Although in the 1990s, for many people are often the only hope. But insurance like Fasano or those with AIDS on pro- companies often deny coverage of these tease inhibitors, pharmaceuticals are essen- expensive treatments. They are not required tial to survival, the 1965 decision to exclude to cover experimental therapies, even when drugs from Medicare benefits seemed ap- no conventional remedy exists. Thousands propriate to prevent costly red tape and of patients in nationally known health plans fraud when it was made in the pre-computer have opened letters [in which they are refused vital medical care], suddenly finding out how age.⁹¹ Frequently costing no more than uninsured they actually are.⁸⁶ one or two dollars, medications were not only inexpensive at that time, but they Moreover, Dr. Jonathan Finley of New York were also not nearly as significant a fac- City's Memorial Sloan-Kettering Cancer tor in health care as they would later be- Center indicates that potentially lifesaving come with advances in technology. Because plans of treatment (such as "high dose Medicare has not caught up with current chemotherapy with stem cell rescue"), sup- medical realities, many people with disabil- ported by peer-review data, are inaccurately ities requiring expensive pharmaceuticals labeled "experimental" by insurance com- are forced to become Medicaid recipients panies and routinely denied.⁸⁷ or to join managed care plans that-except I26 CHAPTER SEVEN for covering drugs-do not adequately serve Falling through the Cracks: Children their needs. with Special Health Needs Described in an April 1998 brief filed by Legal Aid on behalf of the Connecti- Melinda Dutton, senior health policy spe- cut Union of Disability Action Groups as cialist for the New York State Children's De- an "abrupt, unprecedented break with over fense Fund, notes that by early 1999, nation- twenty years of federal court jurisprudence wide, "progress has been made on behalf of in the Medicaid arena," Desario v. Thomas⁹² children with disabilities generally." Peggy galvanized the disability community. A tem- McManus, codirector of the Maternal and porary setback for disability advocates, this Child Care Health Policy Research Center, February 1998 decision by the U.S. Court describes the effect of the 1996 welfare over- of Appeals of the Second Circuit upheld haul on children with disabilities: "The in- a federal law that permitted New York, frastructure that has been created as a safety Connecticut, and Vermont to deny some net for kids with special needs is crum- Medicaid funds to poor people with se- bling.' In the same year, the New York Times vere disabilities.93 As Justice For All notes, reported that "the number of children on "In reversing the district court's injunc- the disability rolls tripled [since 1989], tion, the Court of Appeals authorized states and costs quadrupled, to more than five to ration health care by providing only billion dollars a year."97 This number grew the type of treatment needed by 'most' not because of welfare fraud, as had been in- Medicaid recipients." The threat to ac- correctly reported,⁹⁸ but rather as a result of cess of Medicaid services was so great that the swelling childhood poverty rate, a loos- a broad coalition of eighty-one state and ening of eligibility rules that provided bene- national disability, disease, provider, reli- fits to children with "mental impairments," gious, and labor organizations filed an am- as well as court decisions-especially the icus curiae brief in support of the plain- 1990 Supreme Court's Zebley ruling, that re- tiff's position. sulted in increased accuracy in government After disability advocates persuaded the assessment of children with disabilities.⁹⁹ Clinton administration to review this rul- Dutton continues, "With the changes in- ing, federal policy was changed. The fed- cluded in the Balanced Budget Act of 1997, eral Health Care Financing Adminis- the safety net is better than ever, but many tration noted in a September 1998 letter children with special health needs are still to Medicaid directors that a state "may falling through the cracks." not impose arbitrary limits' like those ap- Dutton is referring to the block grants to parently endorsed by the Appeals Court, the states included in this act-resulting in on necessary equipment." Consequently, in the expansion of Medicaid as well as the new January 1999 the U.S. Supreme Court in federal Child Health Insurance Program Slekis v. Thomas vacated the ruling, return- (CHIP)-that benefit children with disabil- ing the case to the Court of Appeals for ities. With states receiving increased Medi- the Second Circuit for further considera- caid funding, "more children who meet cer- tion in light of this new federal directive tain qualifications related to their medical concerning the scope of Medicaid cover- condition or disability are able to partici- age. Slekis demonstrates what disability ac- pate in Medicaid without regard to their tivists vigorously assert: the necessity for parents' financial resources," Dutton states. vigilance in a time of volatility in health care While an existing Medicaid waiver pro- policy. gram¹⁰⁰ provides health insurance for many ACCESS TO JOBS AND HEALTH CARE I27 children with severe disabilities or illnesses, asserts that "they may not be able to get the program has significant limitations: the machine they need to breathe, or the only children with specific diagnoses are home care they require, or the wheelchair eligible; unlike in other Medicaid programs, inserts that they grow out of every year. If the dollar amount of services is capped per we just look at children with special health year; and historically, there have been wait- needs who are uninsured, we would grossly ing lists for eligible children. underestimate the challenge. These private CHIP covers children whose parents earn insurance products were not written with too much for Medicaid, but too little to children with disabilities in mind." Dutton afford private health insurance. Although observes that in order to craft a big-picture many children with disabilities are included solution that would eliminate the cracks in CHIP, the provisions of the new pro- in the system, families of and advocates gram are not nearly as comprehensive as for children across various disabilities, ill- those of the thirty-year-old Medicaid pro- nesses, and programs must be provided with gram. 101 For example, the Early Periodic the resources they require to organize. Such Screening, Diagnosis and Testing (EPSDT) coalition building, she adds, would facili- provision in Medicaid requires that if treat- tate communication among-and provide ment, service, or equipment-such as an or- a sense of empowerment to-these families gan transplant, a wheelchair, or an air con- and advocates, as well as create a mobilizing ditioner (for an asthmatic child)-is med- political force that would increase public ically necessary for a child's health, wel- awareness of these issues. fare, growth, and well-being, it must be granted. Efforts by advocates of children with special health needs to get provisions Long-Term Care in the Community in CHIP equivalent to Medicaid's EPSDT failed, for there was no political will- The National Council on Disability, an or- even among the most liberal legislators- ganization that played a pivotal role in the to have that broad Medicaid package in- enactment of the ADA, indicates that long- cluded in the new program. With caps sim- term home health care (including "effective ilar to those in private insurance and with rehabilitation, prevention of secondary dis- each state defining its own benefit package, abilities and complications, and indepen- too often CHIP does not adequately serve dent living"), which is vital to many peo- children with the most serious disabilities ple with disabilities, is excluded from most and illnesses. managed care programs.¹⁰³ Some people Dutton points out that "despite the im- with physical, psychiatric, or developmental provements, we've got a long way to go to get disabilities need personal assistance services all children with special health needs access in order to live independently in the com- to all the health services they require." Many munity. Yet, as Melvin R. Tansman, director uninsured children, a significant number of health policy at Eastern Paralyzed Veter- with disabilities, who are eligible for Medi- ans Association, states, "There is no com- caid or CHIP are not enrolled "because their prehensive federal policy that addresses the parents don't know what their children are need for long-term care."¹⁰⁴ Many disability entitled to. "102 While children with special advocates indicate that independent living health needs who are covered through their is usually not only less expensive than insti- parents' private health insurance may be tutionalization, but also that many people eligible for routine medical care, Dutton with disabilities prefer participation in the 128 CHAPTER SEVEN community to what they perceive as "incar- that the 1997 funding levels were more rea- ceration" in a nursing home. The nature sonable than the 1994 levels. Furthermore, of independent living is determined by the they point out that the cuts are fiscally ill- home care needs of the particular individual advised because, for example, if a person served. Some require as much as twenty- who needs home care is denied Medicare ser- four-hour services; for others an hour in vices amounting to twenty thousand dollars the morning and an hour in the evening annually, then that individual will be placed would suffice. in a nursing home costing Medicaid fifty Moreover, NCD observes that "escalat- thousand dollars a year. A series of stud- ing restrictions from private [health care] ies conducted from the mid- to late 1990s insurers have increasingly pushed high- by New York City comptroller, Alan Hevesi, risk, high-utilization people with disabili- "Net Loss I, II, and III," demonstrates the ties into public sector programs"-Medicare economic advantage of home health care and Medicaid. 105 Since "hospitals have for people with chronic conditions. Hevesi strong financial incentives to discharge states, "If you do harm-cut home care ser- Medicare patients as soon as possible," vices and put people in nursing homes-and growing numbers of people-younger than you save money, you have a debate. But if sixty-five-with disabilities, as well as many you do harm by institutionalizing people older people with chronic conditions, are and you lose money, as our studies have being served by home health care. 106 Many revealed, how can you argue against long Medicaid beneficiaries also depend on term health care in the community?"¹¹ home health care. "Because of advances in medical science and technology, people liv- ing at home can receive complex services Health Policy Reforms that were once available only in nursing homes or hospitals. An example is infusion In Achieving Independence (1996), the NCD therapy, which supplies medication and nu- provided to the president, the Congress, and trition to patients with cancer, AIDS or the nation with an analysis of federal laws other serious illnesses." Other complicated and programs affecting the disability pop- treatments possible in the home that were ulation, including an assessment of trends once provided only by doctors and nurses in the health care system. In order to en- include dialysis, chemotherapy--even suc- sure that private and public entities pro- tioning the excess mucus from the trachea viding health care services do not discrim- of a two-year-old "whose brain does not inate against people with disabilities, NCD emit the signals for him to breathe properly offered to establish an advisory committee while he sleeps. "107 Yet political pressure to to work with the Department of Justice. 111 reduce mounting Medicare and Medicaid The NCD suggested special consideration spending threatens to limit the provision of of issues and promulgation of regulations this crucial long-term home health care. 108 "clarifying the application of Titles II and In part as a response to fraudulent pro- III of the ADA and Sections 503 and 504 viders, the Balanced Budget Act of 1997 of the Rehabilitation Act of 1973 to pri- froze home health care at 1994 funding vate health insurance companies and health levels, resulting in a 30 percent cut in ser- plans," including those that service Medi- vices. 109 Noting that the act punished the care and Medicaid recipients.¹¹² consumers of services rather than the perpe- Although Medicaid was specifically cre- trators of fraud, disability advocates argue ated for people with limited incomes, many ACCESS TO JOBS AND HEALTH CARE 129 of whom are disabled or older, Medicare "an incentive [for government] to meet the originally was established to deal with the health needs and long-term services needs acute health care requirements of older peo- of people with disabilities. "118 As the NCD ple who contributed to Social Security. The pointed out, mechanisms for the presen- 1972 amendments to the Social Security tation of suitable appeals and grievances Act, however, allowed recipients of disability to entities-such as ombudsmen-not con- benefits under the age of sixty-five to qualify nected to health plans would enable people for Medicare. 113 Yet by 1999, the expanded with disabilities and other consumers to Medicare program was not adequately serv- challenge health insurance decisions. The ing the needs of the roughly five mil- NCD also endorsed the transformation of lion Medicare beneficiaries under the age "Medicaid's institutional bias" into a pre- of sixty-five with disabilities,¹¹⁴ the fastest sumption that "long-term services and sup- growing group of Medicare recipients. 115 ports should be provided in the home and In order to update Medicare, the NCD community, with congregate-care settings urged Congress to periodically review the as a last resort." benefit package so that services, such as Recognizing the increasing numbers of medical treatment and therapy, as well as people with disabilities dependent upon assistive technologies, reflect current health Medicaid-sponsored managed care health care and medical practices. 116 "A [1998] Na- plans, and the potential for these plans to tional Organization on Disability/Harris incorporate Medicare recipients, the NCD survey of Americans with disabilities noted emphasized the importance of significant that 69 percent of adults with disabilities federal control in establishing standards who are not employed gave the need for and monitoring compliance. 119 Contending continued medical treatment or therapy as that segmentation of the health insurance a reason for not returning to work. These market based on risk militates against ac- services are rarely covered by employer- cess to coverage by many people in the dis- sponsored health insurance. "117 The NCD ability population, the NCD favors a health advised that Medicare recipients with dis- care system by the year 2006 that spreads abilities should be encouraged to return to risk by including everyone; thus, public and the workforce by allowing them to retain private insurers would compete on the basis their Medicare benefits when they acquire of price and quality, not price and risk. 120 jobs. Both workers with disabilities and the general public would benefit from such a provision since these gainfully-employed in- The Nexus between Jobs dividuals with disabilities would no longer and Health Care be receiving Social Security payments. Inasmuch as Medicaid payments are es- The disincentives resulting from the nexus sential to many people with severe disabil- between jobs and health care for people with ities, the NCD recommended the continu- disabilities have presented a major obsta- ation of appropriate funding levels, estab- cle to the employment of potential work- lishment of a federal definition of disability, ers with disabilities who can and want to and the maintenance of a "federal private work. Since Medicaid-the sole source of right of action." With projected increased reimbursement for long-term services and state control over Medicaid, a "federal pri- supports-has been available only to people vate right of action" would enable Medi- who are not working, many people with caid recipients to petition federal courts as disabilities have been forced to remain un- 130 CHAPTER SEVEN employed. In order to remain on Medi- vided by MediCal. 126 MediCal is California care by 1999, recipients of Social Security Medicaid, the California health care system Disability Insurance were precluded from for those on SSI, 127 a federal benefit program earning more than seven hundred dollars a for people with disabilities and older people month. 121 In addition, because of "preexist- living at the poverty level. Since even with a ing condition exclusions, limits on benefits, well-paying job he could not afford to pay and caps on payments," most health in- for his in-home services, he doubted that he surance companies do not adequately cover would be able to accept employment after he people with disabilities. 122 Consequently, completed his Ph.D. many workers with disabling conditions, no When Longmore was offered a fellowship, longer covered by health insurance com- he discovered that-according to the rules panies, have been forced to become Social of SSI-he was neither allowed to accept the Security beneficiaries on Medicare or Med- fellowship nor royalties from the book he icaid rather than employees. had published, a biography of George Wash- "Because there is no well-established or ington. A few months after a story appeared well-funded system to provide supports to in the Los Angeles Times about Longmore maximize employment, and there is a well- burning his book in front of the Social Secu- established system for providing cash com- rity offices to demonstrate against the injus- pensation, people with disabilities may have tice he was forced to endure, an amendment no choice except to leave the workforce and to a congressional bill corrected some of the accept the cash. "123 In order to get potential inequities against which he had protested. workers with disabilities out of government Yet income maintenance programs for peo- subsidized income-maintenance programs ple with disabilities such as Workers' Com- and into the workforce, Rebecca Ogle of Jus- pensation, SSDI, and SSI have continued tice For All maintains that the nation would to keep many qualified people out of the be best served by "a national non-means labor force. tested program for home and community- On a more optimistic note, President based services and supports. A growing Clinton quotes President Franklin Roo- bipartisan effort in the Congress to counter sevelt: "No country, no matter how rich, the disincentives to employment for benefi- can afford to waste its human resource. "128 ciaries with disabilities who have the ability EEOC vice chair Paul M. Igasaki elaborates and desire to work was demonstrated by on this point: the 1999 unanimous Senate vote, as well as the 412 to 9 House vote, for the Work Corporate America is beginning to realize that a diverse work force makes economic Incentives Improvement Act (WIIA). 125 The sense and is critical to its success. A 1993 conference version of WIIA, approved in Standard and Poor's study showed that those November 1999 and signed by President companies that achieved some threshold Clinton in December 1999, would permit level of diversity had stock market records states to set up buy-in programs to ex- that were almost two and one-half times tend Medicaid coverage to Supplemental better than similarly situated companies. That diverse work force includes individuals Security Income (SSI) and SSDI recipients with disabilities. 129 who work. Paul Longmore, historian and director of Employment laws applicable to the fed- the Institute on Disability, San Francisco eral government-but not to the private State University, is a polio survivor who sector where over 85 percent of the jobs requires the in-home support services pro- are found-require affirmative action for ACCESS TO JOBS AND HEALTH CARE I3I people with disabilities. Consequently, the ple with disabilities at the Defense Depart- vocational talents of people with severe ment: "She's a quadriplegic, Phi Beta Kappa, impairments who require home care ser- and she says it this way. 'I can't dress myself. vices, such as Judy Gilliam, are seldom re- I can't walk. I can't drive. I can't pick up alized outside of the federal government. 130 a glass of water. But I can work.' And her Claiborne Haughton Jr., director for Civil- work, I'm here to tell you, is consistently ian Equal Employment Opportunity, de- characterized by superior quality and pro- scribed Gilliam, his GS-I5 manager for peo- ductivity."¹³¹ Chapter Eight "Not Dead Yet" and Physician-Assisted Suicide WITH INCREASINGLY SOPHISTICATED The organization was founded in Spring technology for life-sustaining treatment, 1996 in reaction to public support for le- doctors frequently are given the awesome galization of assisted death that had been responsibility of determining when a life promoted by the well-publicized suicides should end. Anthropologist Margaret Mead aided by Jack Kevorkian.³ Mark O'Brien- observed that "society is always attempting journalist, poet, and member of Not Dead to make the physician into a killer-for in- Yet, as well as the subject of the 1997 stance, to kill the defective child at birth Academy Award-winning documentary It is the duty of society to protect the physi- "Breathing Lessons"-responds to the Ke- cian from such requests."¹ People with dis- vorkian ethic: abilities are particularly vulnerable to judg- ments that their lives are not worth living.2 It is tempting to pity a man in an iron lung. But pity has become a lethal weapon. On January 8 [1997], the Supreme Court heard Opposition to "the Death Train" arguments in favor of killing people like me- out of pity-to end our suffering. An iron lung On January 8, 1997, while the U.S. Supreme has been my second skin since the 1955 polio Court was hearing Vacco v. Quill-a case in- epidemic. For forty years, people have said, "That poor thing-how he must suffer! He's volving the constitutionality of state laws terminally ill, you know." I'm not "suffering," prohibiting physician-assisted suicide- "terminal," or even "ill." Don't waste your people from many parts of the nation pity on me. I want to live. Every year, the demonstrated in front of the Court. Many practitioners of mercy death kill thousands of the demonstrators, people with severe of people against our will-out of pity. If the disabilities-blind people, deaf people, peo- Supreme Court declares mercy death legal, ple in motorized wheelchairs-displayed that's like declaring open season on people with disabilities. We are not contagious or signs proclaiming the sardonic name of dangerous. And we aren't affiliated with any their organization, Not Dead Yet, in political party. We are people who hear the "spooky-shaped" letters evoking the spirit death train. We will not board that train of Halloween. willingly.4 "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 133 In the amicus curiae briefs submitted by role in shaping that newspaper's approach Not Dead Yet and American Disabled for to assisted suicide. 10 Betzold reveals that Attendant Programs Today (ADAPT), attor- "in his writings and statements, Kevorkian neys Diane Coleman and Stephen Gold- advocates a society that allows euthanasia supporting former New York State attor- for the dying, the disabled, the mentally ney general Dennis Vacco's effort to uphold ill, infants with birth defects, and comatose the constitutionality of the state's ban on adults; and he sanctions experiments prior physician-assisted suicide-contended that to their death and organ harvesting. He en- "the creation of a right to assisted suicide visions a global system of death on demand for a class of individuals based on health run by doctors who operate without over- status or disability is a lethal form of dis- sight from government or ethicists."¹¹ crimination that violates the ADA." The Critic of physician-assisted suicide Nat disability community was concerned about Hentoff of New York City's Village Voice the potentially ominous consequences of notes: physician-assisted suicide for those peo- It's a bitter irony [that a] quintessentially ple whose quality of life may be consid- liberal judge [Ninth Circuit Court Judge ered unacceptable by members of the med- Stephen Reinhardt] has opened the door ical profession. wide not only to assisted suicide but also Responding to the much publicized No- to euthanasia, because the majority of the vember 22, 1998, "60 Minutes" spectacle of resultant dead will be the poor, the disabled, Kevorkian injecting Thomas Youk-a man and other vulnerable people. Many of them with amyotrophic lateral sclerosis (ALS)- will persuade themselves to die because they feel nobody thinks their lives are worth with lethal chemicals,6 Coleman, founder preserving. Or that keeping themselves alive and president of Not Dead Yet, asserted: will cost too much, thereby burdening their "Reporters ignore the fact that most of families and companions.12 Kevorkian's victims have been disabled, not terminal, ignore the discrimination and oppression that drove each of them to The Supreme Court despair-ignore the injustice in a society that helps people die, but refuses to help Reversing the 1996 rulings in the Second us [people with disabilities] live with the Circuit Court of Appeals in Vacco v. Quill basic respect and the simple supports we de- and in the Ninth Circuit Court of Appeals serve."7 Kevorkian, who claims he has helped in Washington v. Glucksberg the U.S. Supreme more than 130 people commit suicide, was Court on June 26, 1997, unanimously up- found guilty of second-degree murder in held state criminal laws against physician- the Youk case, after prosecutors had unsuc- assisted suicide. 13 Prior to Quill, competent cessfully attempted to convict him in five adults in New York State had the right to former cases.⁸ refuse medical treatment, and physicians Michael Betzold explains in his 1997 ex- were allowed to honor the requests of such posé of journalist Jack Lessenberry, "The patients to withhold or terminate life sup- Selling of Dr. Death," how Kevorkian be- port. At the same time, intentionally assist- came a national hero.⁹ A personal friend of ing another person to commit or attempt Kevorkian and his attorney Geoffrey Fieger, suicide was a felony according to New York Lessenberry reported on Kevorkian for the State law. New York Times from 1993 until publication The Second Circuit Court of Appeals of the Betzold exposé, thus playing a major recognized that the right to refuse life- I34 CHAPTER EIGHT sustaining treatment gives those patients be recognized that assisted suicide and who become dependent on life support the euthanasia will be practiced through the opportunity to have some control over the prism of social inequality and prejudice that timing of their death. Finding no ratio- characterizes the delivery of services in all nal basis for the state allowing patients segments of society, including health care." to end life by requesting cessation of life He noted that even if they are not dying, support while, simultaneously, denying pa- "persons requiring dialysis, respirators, in- tients similar control when life support is sulin or long-term nursing care would all not involved, the court ruled in favor of Dr. be candidates for euthanasia."¹ Quill. This difference, the court held, vio- Yet allegiances on this issue are unpre- lates the Equal Protection Clause of the U.S. dictable, as illustrated by the court chal- Constitution. Attorney General Vacco, ap- lenges by the National Right-to-Life pealing the court's decision, argued before Committee to the Oregon aid-in-dying mea- the U.S. Supreme Court in 1997 to uphold sure, an initiative approved by the voters New York State's ban on physician-assisted in 1994, preventing physician-assisted sui- suicide. cide from taking effect until a later Oregon While the appeals court decisions in both vote in 1997. On the other hand, three New Quill and Glucksberg supported physician- York law firms-Arnold & Porter; Cravath, assisted suicide, Judge Reinhardt's defini- Swaine & Moore; Debevoise & Plimpton- tion of "terminal" in the latter case as each with a history of pro bono legal con- any "medical condition that is incurable tributions to disability causes and orga- and irreversible" seemed threatening to nizations, supported physician-assisted sui- many people with disabilities and chronic cide.¹⁸ Also, liberal Harvard law profes- illnesses.¹ 14 As early as 1958, law profes- sor Laurence H. Tribe argued before the sor Yale Kamisar warned of courts and U.S. Supreme Court in 1997 for physician- physicians, even clerics, allowing family assisted suicide. members to remove feeding tubes and res- In his majority opinion in Vacco v. Quill pirators from people who were suppos- validating the state prohibition on physi- edly terminal. 15 Anticipating a movement cian-assisted suicide, Chief Justice William towards active euthanasia for the socially H. Rehnquist noted that this issue is prop- vulnerable, Kamisar cautioned that some erly within the jurisdiction of the states: of those patients' lives could have been ex- The state has an interest in protecting tended considerably. In his essay "Against vulnerable groups including the poor, Assisted Suicide-Even in a Very Limited the elderly, and disabled persons from Form," Kamisar quoted his former col- abuse, neglect and mistakes. The court of league, Robert Burt: "It would be ironic appeals dismissed the state's concern that if [at a time when millions of Americans disadvantaged persons might be pressured lack adequate health care] the judiciary se- into physician-assisted suicide as "ludicrous lected physician-assisted suicide as the one on its face." We have recognized, however, the real risk of subtle coercion and undue health care right that deserves constitu- influence in end-of-life situations. 19 tional status."¹⁶ Strongly influenced by Kamisar's analy- sis, Ninth Circuit Judge Robert Beezer, in AIDS Activists his dissenting opinion in Glucksberg, quoted from a 1994 report by the New York State Most AIDS activists take a position sanc- Task Force on Life and the Law: "It must tioning physician-assisted suicide, contrary "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 135 to the majority of other disability rights overdose of sleeping pills for a patient with activists. Three terminally-ill patients, one end-stage leukemia, a woman who was seek- with cancer and two with AIDS, as well as ing his assistance in dying.22 Quill defended Dr. Timothy Quill and two other doctors, his action with a question: "Are we going to, initiated the case in support of physician- as a culture, override a person's deathbed assisted suicide. An amicus curiae brief sup- request, a person who is dying who says, 'I porting the patients and doctors included need some help here?" not only the well-known gay rights orga- Supporting Quill's position, Dr. Lon- nization, Lambda Legal Defense and Ed- nie Shavelson argued for the establishment ucation Fund, and some religious groups, of protocols for physician-assisted suicide: but also the National Association of People "It [physician-assisted suicide] is happening with AIDS. anyway, whether it's legal or not. I see Larry Kramer, a vocal activist in the AIDS a tremendous amount of hidden, under- movement, indicates that "since the start of ground practice [of such suicides] in which the epidemic, there have always been doc- nobody knows if there are abuses. I see po- tors one could talk to All of us who have tential disasters." Confirming Shavelson's been on the front line have experiences- assertion, a survey published in I997 of II8 plural-with people who didn't want to suf- members of the Bay Area Community Con- fer anymore. Although he knew many sortium, an association of local AIDS doc- desperately ill people who had procured tors, revealed that 53 percent of the respon- lethal medication, he was profoundly af- dents reported helping at least one of their fected by the death of Brad Davis, the star patients to commit suicide.²³ of Kramer's AIDS play, The Normal Heart: "The medicine was very painful, and it wasn't working, and he just saw no sun- shine ahead or anything. He was just go- Pain Management ing to get sicker and sicker, and he didn't want to put his family through that. And Other medical practitioners argue that the he did not want to suffer the pain him- technology to manage pain is available. Pe- self." Stirred by this incident, Kramer allied diatric AIDS nurse Sheila Diamond states with a Seattle group, Compassion In Dying, that "there is really no such thing as in- that was pursuing "a constitutional right to tractable pain, but only pain which is under- 'self-deliverance." Revealing that he felt like recognized, under-treated." Reinforcing "the casting director," Kramer recruited two Diamond's assertion, hospice doctor Ira By- other physicians-his own psychiatrist, Dr. ock explains: Samuel Klagsbrun, and an old friend, Dr. Not only do we know that people's pain of Howard Grossman-to affiliate with Quill their terminal illness often goes inadequately in the lawsuit. treated, it's often not even addressed. Beyond On October 30, 1996, for the first time a that, as if that weren't bad enough, our small group of medical practitioners, four current non-system of health care routinely physicians and a psychologist, publicly en- pauperizes people simply for being chronically dorsed the campaign of Jack Kevorkian, ini- ill and not dying quickly enough When tiated in 1990, for physician-assisted sui- you look at the curriculum of medical training, there is very, very little attention to cide.²¹ In 1991, Quill, a mainstream physi- caring for people at the end of life. Even pain cian, wrote his unprecedented public con- control occupies no more than a handful of fession regarding his prescribing a fatal hours in a four-year course of study. 136 CHAPTER EIGHT Dr. Kathleen Foley, palliative care specialist doctors accepted myths such as that third- at New York's Memorial Sloan-Kettering degree burns do not hurt, or that children- Cancer Center and a pioneer since the mid- because of their undeveloped nervous sys- 1970s in the field of palliative care and tems-do not feel pain, or that cancer pain pain management, points out that "even can never be alleviated. In fact, Carr indi- oncology residents and fellows are poorly cates that although 90 percent of instances trained. It's a well-documented fact that of cancer pain can be managed successfully, those asking for assisted suicide almost at least 30 to 40 percent of these cases are always change their mind once we have their undertreated. Furthermore, 30 to 40 per- pain under control."25 cent of cancer patients experience clinical Both proponents and opponents of phy- depression, which Carr insists can be treated sician-assisted suicide agree that pain man- and reversed. Carr and Hendler maintain agement is a preferable option to state- that with the treatment of depression- sanctioned suicide. Dr. Daniel Carr (in- a major cause of suicide among patients ternist and anesthesiologist at the New with acute physical illnesses-in combina- England Medical Center in Boston, who tion with proper palliative care, physician- has helped craft two sets of pain manage- assisted suicide could well be rendered un- ment guidelines issued by the federal gov- necessary. ernment) and Dr. Nelson Hendler (clini- Carr is concerned that managed care cal director of the Mensana Clinic near "threatens to take away all the hard-fought- Baltimore, who has written extensively on for advances [achieved] over the last cou- pain management) support the medical ple of decades" in pain control. While the profession's movement of the 1990S from physiology of pain requires aggressive and a disease-centered to a patient-centered ap- early treatment, managed care organiza- proach.²⁶ For example, formerly doctors tions tend, in Carr's words, to "delay, defer, were so concerned with the cancer patient's and deny." Thus, he adds, appropriate pain tumor or the AIDS patient's white blood cell management and managed care are "at log- count that they often neglected attending to gerheads with what we [pain management the patient's experience of the illness. Carr experts] know should be done." Although refers to the federal guidelines for pain con- in 1996 Congress required health plans to trol, a graded step-wise progress from less cover at least forty-eight hours of hospi- to more invasive as the medical situation tal care for mothers and newborns, and in requires. Hendler criticizes the multiple dis- 1997 President Clinton recommended sim- incentives to pain management: insurance ilar safeguards for mastectomy patients,²⁷ companies that refuse to pay for pain med- many critics of the current health care sys- ication prescribed by physicians, medical tem are skeptical about the outlook for societies and medical schools that remain pain management procedures. Because "a insufficiently involved in pain management, drive-by mastectomy"-breast surgery for and the Drug Enforcement Agency that ag- which managed care organizations formerly gressively pursues doctors dispensing phar- covered only one day in the hospital- maceuticals for pain control. is a dramatic denial of an essential ser- Both Carr and Hendler agree that pain vice, such practices received much public is frequently undiagnosed or misdiagnosed condemnation. Since pain management is and, as a result, undertreated or even mis- such a complex issue, however, the mishan- treated. Carr points out that for too long dling of this vital service by these organi- "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 137 zations may continue to be neglected for a Other disability advocates point out that long time.2⁸ although Reeve is articulate, well-informed, and socially conscious, he is new to disabil- ity culture and issues. They commend his Focus on Cure: efforts to improve funding and legislation A Pernicious Message for people with disabilities, as well as to encourage equipment suppliers to decrease Campaigning for research into a cure for costs.³³ More to the point has been Reeve's spinal cord injuries, Superman star Christo- ability to resume working in his field. He pher Reeve, who uses a ventilator and a mo- directed a well-received HBO special, In the torized wheelchair, provokes disability ad- Gloaming, in late 1996, and in 1998 he di- vocates who believe that he is inadvertently rected and starred in a remake of Alfred sending a pernicious message: disabled peo- Hitchcock's 1954 classic film Rear Window, ple are not whole unless cured. Reeve notes with the protagonist in the new version that "until five years ago, it was believed that using the modern technology available in spinal cord could not regenerate. Now it's the late 1990s. Yet the fact that Reeve has proved that it can. Research deserves our been able to continue his involvement in so support, though there's a long way to go."29 many activities-his autobiography, Still Me, Many in the disability community, however, was published in 1998³⁴-does not preclude argue that this costly research, whose prac- the possibility that he may still be in the tical application may not be apparent for "mourning phase" for his paralysis result- many years, "could drain resources from ing from his 1995 horseback-riding accident. the more realistic [and in some cases even Regardless of Reeve's focus on cure in his desperate] needs of the present."³⁰ discourse, in his life he demonstrates his de- Speaking in neither of her official roles- termination as a person with a disability to as chair of the National Council on Disabil- participate in the world utilizing his unique ity nor as president and CEO of Access Liv- intelligence, talents, and visibility. ing, the Chicago independent living center- In his book Moving Violations, journalist Marca Bristo does not object to Reeve's de- John Hockenberry, who also has a spinal sire to encourage research or even to seek a cord injury, writes: "There is much more cure for spinal cord injuries.31 The increased effort put into curing spinal cord injuries survival rate of spinal cord injured people or discussing the legal issues involved in has resulted from research, she observes. Yet, suicide for the severely disabled than there uncomfortable with Reeve soliciting from is integrating disabled folks into society at the private rather than the public sector, she large. Pray to be normal no matter how im- considers "the hype" that he uses to gener- possible it seems is the sentimental message. ate donations detrimental to the disability The alternative is too horrible to contem- rights movement. Frustrated by the mass plate.' "35 Disability activist and quadriplegic media's general inability to perceive disabil- motorized wheelchair user Daniel Robert ity in a civil rights context, many disability describes the quandary in which people advocates view Reeve's March I, 1998, two- with disabilities find themselves: "And there hour television special, Christopher Reeve: A we are, between a rock and a hard place, Celebration of Hope, as a sophisticated version between waiting for a 'Cure' (read Miracle) of a Jerry Lewis telethon, employing pity to and waiting to be 'offed.' The sum total of elicit contributions.³² all the media attention given to Christopher 138 CHAPTER EIGHT Reeve and Jack Kevorkian boils down to life, but Dr. Dickey refuses to perform the this simple formula. If they can't fix us we're operation. Anne is torn by uncertainty until better off dead. It's our civic duty."36 God reveals a lengthy vision of the child's future, filled with pain, madness, and crime. Her doubts resolved, she accepts Dr. Dickey's judgment, and the baby's soul leaps into the The Eugenics Movement and arms of a waiting Jesus.³⁹ Euthanasia Pernick reveals why Haiselden was not Medical historian Martin S. Pernick docu- only supported by so many prominent early ments the sensational story of Dr. Harry twentieth-century Americans, but also won Haiselden, a prominent Chicago surgeon, editorial endorsements from some of the who in 1916 was as well known to Ameri- country's most prestigious publications, in- cans as Jack Kevorkian is in the 1990s. As cluding the New York Times and the New Pernick explains, when Haiselden decided Republic:40 "The common progressive belief in November 1915 to allow a newborn baby that science provided objective means for with an impairment to die, he told a re- distinguishing good lives from bad ones hid porter for Hearst's Chicago-American that al- the subjectivity of the values people actually though he had permitted other newborns used to make such judgments. And because to die quietly, he wanted to make this case a they believed their values to be objectively public issue: proven, they could dismiss ethical or po- litical criticisms as biased, unscientific, and Haiselden and his supporters were torn therefore irrelevant."41 between passionate expressions of sympathy One of the most egregious examples of and love, versus, in the next breath, expressing contempt, hatred, fear and loathing for those the perversion of medicine was the mass born with disabilities. The disabled were a killing of people viewed as mentally or menace, an evil stalking beast, that was going physically inadequate by the Nazi doctors. to devour society. Haiselden was investigated Robert J. Lifton links this so-called "bio- three times by different legal authorities, medical vision" practiced by leading physi- for allowing impaired newborns to die, and cians in Nazi Germany with the eugenics each time he was upheld, but he was expelled movement that continued to be deemed from the Chicago Medical Society for writing newspaper articles and making a movie, [The respectable in the United States and Eng- Black Stork].³⁸ land in the 1920S and even beyond. 42 In 1923, Fritz Lenz, a German physician-geneticist, Working with "muckraking" Hearst jour- complained that "Germany had nothing to nalist Jack Lait, Haiselden was both writer match the eugenics research institutions in and star of The Black Stork, a film whose England and the United States."43 storyline resembled a widely publicized in- Lenz rebuked the German people be- cident involving a newborn girl with spina cause of "their backwardness in the do- bifida: main of sterilization as compared to the United States [for] Germany had no equiva- The main plot of this remarkable film begins lent to the American laws prohibiting mar- with Claude, who has an unnamed inherited riage for people suffering from such con- disease. Despite repeated graphic warnings from Dr. Dickey (played by Haiselden ditions as epilepsy or mental retardation." himself), Claude marries his sweetheart, Virginia Kallianes and Phyllis Rubenfeld Anne. Their baby is born so severely disabled discuss the impact, especially on women that it needs immediate surgery to save its with disabilities, of the reoccurrence of the "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 139 eugenics movement in the late twentieth the I930S euthanasia movements in England century: and the United States. These movements Given the repression of sexuality and social inspired execution by Nazi doctors of two proscription of mothering among disabled hundred thousand people judged deficient women, it is not surprising that they because of their physical and mental im- look suspiciously upon selective abortion pairments.⁴ Although Hitler rescinded this or genetic technologies that are used to euthanasia policy on August 24, 1941, the prevent reproduction by disabled women only official order reversed in his twelve or the birth of disabled babies. Some years of power,⁴⁸ the killing of people with of this concern arises from the legacy of sterilization abuse among disabled women, disabilities continued by means that were particularly in the early 20th century United not always obvious, such as withholding States eugenics movement. Many see in of treatment, medication, or food. Yet the advancing reproductive technologies, such as Nuremberg court did not require that repa- genetic screening combined with abortion, rations be paid to the families of those with the return of eugenics practices and claim disabilities who were killed, nor that their society is reverting to attitudes such as murderers be punished. those embodied in the 1927 United States Supreme Court case upholding compulsory In this context, Coleman and Gill's ref- sterilization in the state of Virginia which erence to Kevorkian's admission that his came from Oliver Wendell Holmes's often suicide device was designed as an answer quoted statement: "Society can prevent those for quadriplegics is a chilling harbinger to who are manifestly unfit from continuing many people with disabilities of "the right their kind."⁴⁴ to die" becoming "the duty to die. Echoes J. P. Landman, in his 1932 study of the of Nazi rhetoric are evident in Kevorkian's sterilization movement in the United States, defense of "medicide": "The voluntary self- refers to "overzealous and overardent eu- elimination of individual and mortally dis- genicists" who "regard the feebleminded, eased or crippled lives taken collectively can the epileptics, the mentally diseased, the only enhance the preservation of public blind, the deformed, and the criminals as health and welfare."⁵¹ Women's roles as nur- inimical to the human race [because] turers and caretakers make them especially these people perpetuate their deficiencies vulnerable when they become dependent: and thus threaten the quality of the ensuing generations."⁴⁵ Because they contended "a If anyone doubts that women will be exploited and endangered by assisted suicide, the nation must defend itself against national doubters should study Kevorkian's "clients." degeneration as much as against the ex- The first eight were all middle-aged or elderly ternal foreign enemy," these eugenicists be- women with chronic illnesses and disabilities. lieved, according to Lenz, that the nation Many said they feared being a burden on should endeavor "to exterminate these un- others. An autopsy on one of them revealed desirables." no evidence of any physical illness. Women In their 1996 testimony delivered before with disabilities are going to be the first to feel a "duty to die."52 Congress, Diane Coleman and Carol Gill succinctly articulated the strong objections Despite the current prosperity, oppo- to physician-assisted suicide by many mem- nents of disability rights always claim that bers of the disability community.46 Hav- resources are scarce; therefore, people with ing experienced discrimination and perse- disabilities are apprehensive about being cution, people with disabilities and incur- perceived as costly, unproductive expend- able chronic diseases fear a reemergence of ables.⁵³ Campaigners for a right-to-die 140 CHAPTER EIGHT movement in the 1990s Derek Humphry for three years. The Emanuels note the and Mary Clement state that "in the fi- "historical precedent for blocking efforts to nal analysis, economics, not the quest for sanction euthanasia": Despite much public broadened individual liberties or increased debate in the United States from 1890 to autonomy, will drive assisted suicide to the 1906 regarding legalization of physician- plateau of accepted practice."⁵⁴ More radi- assisted suicide, in 1907 the Ohio legislature cally, John Hardwig asserts, "In fact, there failed to support the measure and, as a may be a fairly common responsibility to result, "euthanasia all but disappeared from end one's life in the absence of any terminal the public agenda until the last few years." illness at all. Finally, there can be a duty to die While the Emanuels believe that "legisla- when one would prefer to live. "55 In reaction tors understand that deep down the public to this mindset, Coleman and Gill warn that is ambivalent about euthanasia," Emerman assisted-suicide proponents have been feed- is profoundly concerned about this con- ing public misconceptions regarding the so- troversy. Given the common public misun- cial expense of disability in their character- derstandings about disability and assisted ization of services, devices, and technology suicide, as well as the complexity of this for people with disabilities as resulting in contentious issue, those in the disability an inherently undignified lifestyle. community who are fervently opposed have their work cut out for them, she maintains. They must embark on "a crusade to edu- The Politics of Physician-Assisted cate the public." She was referring to the Suicide Gallup survey revealing that 75 percent of Americans believe doctors should be legally As former director of the New York City permitted to "end a patient's life by painless Mayor's Office for People with Disabil- means," as well as the poll of the American ities, Anne Emerman and law professor Society of Internal Medicine indicating that Yale Kamisar predicted, the decision re- 40 percent of all doctors had provided assis- garding the "Pandora's box" of physician- tance to their patients who sought a means assisted suicide is being determined in state to end their lives. 60 legislatures rather than in the Supreme A 60 to 40 percent vote by Oregon citi- Court.5 Ezekiel and Linda Emanuel chron- zens on November 4, 1997, on a new refer- icle the national experience with efforts to endum not to repeal the 1994 referendum legalize assisted suicide: "Since 1995, nearly permitting physician-assisted suicide,⁶¹ as fifty bills have been introduced in more well as Attorney General Janet Reno's June 5, than twenty states concerning assisted sui- 1998, ruling removing "the last legal obsta- cide, but none of the bills [until the Ore- cle to the full operation of Oregon's land- gon 1994 referendum] calling for legaliza- mark assisted-suicide law," added to Emer- tion have passed. Today [July 24, 1997] man's apprehension. "It is ironic," Emer- thirty-five states have laws that explicitly man says, "that at a time when technol- criminalize euthanasia and doctor-assisted ogy permits people who are very disabled suicide."⁵⁷ to be independent and productive mem- Although Oregon voters had approved bers of society, they have to contend with legalizing physician-assisted suicide in 1994 this movement for assisted suicide. "63 Con- by a 5I percent to a 49 percent margin, the firming Emerman's fears, Reno's decision referendum was held up by legal challenges signified that other states may pass com- "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 141 parable legislation sanctioning physician- to allocate scarce resources to people with assisted suicide without federal restriction. disabilities: "Whether it's a 'voluntary' DNR Though the front-page New York Times ar- order, a surrogate decision by a family mem- ticle describing Reno's Oregon judgment ber, an involuntary 'futility guideline,' or noted the strong opposition of the Roman health insurance denials, we [people with Catholic Church to authorized assisted sui- disabilities] are being eliminated through cide, no reference was made to the intense the withholding of medical treatment." and vocal objection of most of the disability Futility guidelines, developed by the AMA community.64 and many individual hospitals, allow doc- tors to withhold medical treatment against the expressed wishes of a patient or the Netherlands "Slippery Slope" vs. U.S. patient's family.67 Referring to a statement "Political Strategy" in the December I997 fund-raising letter of the pro-euthanasia organization Compas- Characterizing the policy of the Nether- sion In Dying, Coleman revealed that "pro- lands as a "slippery slope," psychiatrist euthanasia advocates are now raising funds and psychoanalyst Herbert Hendin issued a for expansion of their advocacy efforts to warning to the United States: "The Nether- openly include people with nonterminal lands. has moved from assisted suicide to conditions." euthanasia, from euthanasia for people who Unlike in the Netherlands where the as- are terminally ill to euthanasia for people sisted suicide movement was accurately de- who are chronically ill, from euthanasia for scribed as a slippery slope, the United States physical illness to euthanasia for psycholog- right-to-die campaign is a "political strat- ical distress, and from voluntary euthana- egy," asserted Coleman,68 "as people with sia to involuntary euthanasia (called 'termi- disabilities are regularly bombarded with nation of the patient without explicit re- messages that [they] cost too much to be quest'). "65 In their 1996 congressional tes- allowed to live. She referred to the vision timony, Coleman and Gill offered several embodied in a statement by the founder of illustrations of the relaxation of laws and the right-to-die organization, the Hemlock policies protecting the lives of people with Society, Derek Humphry: "Like it or not, disabilities in the United States: Oregon's the connection between the right-to-die and endeavor to ration health care based on the cost, value, and allocation of health care "quality of life" judgments made by nondis- resources are part of the political debate, abled people reveals the vulnerability of albeit frequently unspoken."70 Citing well- people with costly conditions; lifesaving or- documented physician biases about qual- gan transplants regularly are denied to peo- ity of life for people with impairments and ple with rather mild disabilities; assisted chronic illnesses, Coleman fears further jus- breathing frequently is not presented as an tifications for refusing to provide appropri- option to people with disabilities who need ate health care for the disability population: ventilators; and many using ventilators in- "People with disabilities have no confidence dicate that they are increasingly requested that either the civil or criminal justice sys- to contemplate "do-not-resuscitate (DNR)" tem will value [their] lives enough to protect orders and withdrawal of life support. [them] equally in a society which is more Coleman pointed out that bioethicists and more open in its certainty that everyone have asked if American society is willing would be better off without [them]."⁷¹ 142 CHAPTER EIGHT First-Year Report on Physician-Assisted divorced or never married, Shapiro won- Suicide in Oregon ders whether a care-giving spouse would have altered the patients' decisions. Finally, In 1999, the New York Times compared two re- while the report underplayed the signifi- ports on assisted suicide, one in the Journal cance of fear of financial consequences in of Medical Ethics on the fifteen-year practice the patient's choice of assisted suicide, oth- in the Netherlands, the other by the State ers disagree. As Shapiro notes, "At a recent Health Division on the one-year experience public meeting in Oregon, Ric Burger, a di- in Oregon.⁷² The New York Times reported abetic who uses a wheelchair, complained that the Journal of Medical Ethics found a that the state's Medicaid program now pays "fatal confusion" in the Netherlands be- for assisted suicide [supposed "death with cause assisted suicide is technically illegal dignity"] but not for enough hours for but widely practiced: "In one in five cases in-home aids necessary for many elderly surveyed there, euthanasia was performed and disabled to live-in dignity-in their on patients who had not requested it, and own homes." on patients for whom other untried treat- ments for their illnesses were still available." In contrast, the New York Times indicated Legalizing Disability Discrimination that the Oregon report found no confusion or abuses resulting from the law: "Only I5 In her 1998 testimony before Congress, Di- people, 8 men and 7 women, were helped to ane Coleman maintained that the Oregon die in 1998. Thirteen were cancer patients, assisted-suicide law not only "violates the and many, their doctors said, were decisive Americans with Disabilities Act, [but] un- personalities, or people acting on long-held der a disparate impact analysis, may also principles." violate the Civil Rights Act of 1964."⁷ She Dr. Kathleen Foley and other specialists added, "People with terminal illnesses gen- in terminal care are skeptical about Ore- erally qualify as people with disabilities, yet gon's positive judgment regarding the effect policymakers have completely ignored the of the legislation.73 Not only was the state's ADA violations inherent in assisted-suicide report based on twenty-minute telephone laws. Unfortunately, discrimination based interviews with the doctors who prescribed on health status is still fundamentally ac- the lethal drugs, but the 40 percent of the ceptable in this culture, still so deeply in- doctors in the Oregon cases who refused to grained that hard for people to recognize give the drugs because of their misgivings in it when it stares them in the face." assisting in a suicide were not represented. In fact, Coleman pointed out that Con- As Foley observes, perspectives essential to gress included language in the ADA stating comprehending people's motives in seeking that disability discrimination may warrant assisted suicide were omitted: "We lost the more "judicial and legislative scrutiny" than voices of the patients; we lost the voices of it has frequently been given: "Individuals the families." with disabilities are a discrete and insular mi- Although the report indicated that only nority who have been faced with restrictions one person specified fear of pain as a reason and limitations, subjected to a history of for seeking assisted suicide, Joseph Shapiro purposeful unequal treatment, relegated to refers to others with similar objectives. Since a position of political powerlessness in our those who opted for suicide were "several society."75 She cited a dramatic example of times more likely" than the norm to be such "unequal treatment," an experiment "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 143 that occurred at Children's Hospital of Ok- Dangers of an Inflexible Law lahoma between 1977 and 1982. Twenty-four babies with spina bifida died because their In his article "Whose Right To Die?" on- parents did not know they were being used cologist Dr. Ezekiel Emanuel reveals that in a study testing whether parents would ac- interest in euthanasia-which dates back cept "do-not-treat" recommendations from to 1870-was generated not by new tech- doctors. nologies that extend life, but rather by the Explaining that the Oregon law cannot be discovery of pain-relieving drugs such as understood outside its social context, Cole- morphine that could also result in pain- man described the first widely reported case less death.⁷⁷ Although drugs administered involving an eighty-year-old woman with aggressively-not to hasten death but to breast cancer whose doctors denied her re- relieve pain-may ultimately induce death, quest for assisted suicide because they diag- this practice, both ethically and legally sanc- nosed her as depressed. Once Compassion tioned, is not physician-assisted suicide. In Dying found a doctor who would grant Since depression, not pain, primarily moti- her suicidal request, her case met the ex- vates patients to request physician-assisted plicit requirements of the law. As Coleman suicide, Emanuel notes that our usual ap- observed, "Nothing in the law says the in- proach to people in psychological distress is dividual has to be informed about indepen- "psychiatric intervention-not a syringe dent living or social service options, noth- and life-ending drugs." Moreover, patients ing says that an individual has to actually kept alive by technology who no longer be provided any medical or service alterna- wish to live do not require new legislation tives he or she might prefer, and nothing permitting physician-assisted suicide since says people can't shop around until they they already have the constitutional right to find a doctor who will do it." In addition, discontinue medical interventions. Coleman notes that "since there's no en- Fearing legalization of physician-assisted forcement mechanism, there are no legal suicide, Emanuel predicts that the most vul- consequences for failure to report assisted nerable will be "children, the demented, the suicides."76 mentally ill, the old, and others." No doubt Coleman described this type of discrim- paramount among "the others" would be inatory law to hasten death as tantamount people with disabilities, for frequently pre- to "a denial of equal protection of the sumptions made by healthy people about law under the Fourteenth Amendment." those who are suffering, or those assumed Although she noted that courts have so to be suffering, would not be countenanced far not granted "suspect class' status to by the objects of those presumptions. Many people with disabilities," the landmark U.S. people with visible impairments are con- Supreme Court assisted suicide ruling rec- cerned that the same kind of presumptions ognized disability discrimination: "The often are made by nondisabled people about State's interest goes beyond protecting the the quality of life of people with disabilities. vulnerable from coercion; it extends to pro- According to a 1996 Washington Post poll, tecting disabled and terminally ill people marginalized demographic groups, other from prejudice, negative and inaccurate than people with disabilities, also tend to stereotypes, and 'societal indifference.' feel threatened by legalization of physician- [A] seriously disabled person's suicidal im- assisted suicide: African Americans opposed pulses should be interpreted and treated the legalization 70 percent to 20 percent; people same way as anyone else's." over seventy opposed it 58 percent to 35 I44 CHAPTER EIGHT percent.⁷⁸ Lacking the universal and com- was there, in other words, it could be much, prehensive health care of the Netherlands, much worse here. "81 patients and doctors in the United States could be making decisions about physician- assisted suicide while encouraged to cut "A Better Solution" costs. The significance of this factor will be amplified "in the context of demographic Describing the popular support for phy- and budgetary pressures on Social Security sician-assisted suicide as "neither strong and Medicare as the Baby Boom generation nor deep," Emanuel observes that answers begins to retire, around 2010."79 to questions on the subject are dependent Believing, like Emanuel, that ethical am- on how these queries are crafted. "For the biguities regarding physician-assisted sui- majority of people with disabilities, whose cide are better addressed on a case-by- only information about living with disabil- case basis than by an inflexible rule, ethics ity comes from health care providers, to- professor emeritus Lewis Smedes main- day's trends do not bode well," cautions Di- tains that "sometimes it is better just to ane Coleman: "In those critical early hours, leave things murky."⁸⁰⁰ Harvard's Michael weeks, and months after injury, people J. Sandel explains why even laws that are could easily be swayed to make a so-called disregarded from time-to-time serve a pur- 'choice' for death."⁸² In his article "Amer- pose: "It [physician-assisted suicide] should icans Want a Right to Die. Or So They be burdened morally by the sense that we Think," David E. Rosenbaum refers to "the are taking a life, something that isn't en- opinion surveys [that] have not addressed tirely ours to take. Preserving the laws on the wrenching specifics that for many the books is a way of keeping this sense people first have meaning when they face of burden." Similarly, Emanuel asserts that them personally."8³ physician-assisted suicide should remain il- Nancy Rolnick, a CI-2 quadriplegic- legal and exceptional so that those who paralyzed from the neck down as a result make "moral judgments" will be "account- of an automobile accident and unable to able before the law." breathe without a respirator (or the phrenic Rather than providing the technology nerve pacer she now uses)-describes her and services that would allow people with fundamental difficulty with the "right to disabilities to live productive lives in the die" movement: mainstream, the health care system too fre- quently supports-sometimes even elicits- Before my accident, I saw Brian Clark's play misguided suicidal impulses in vulnerable Whose Life Is It Anyway? about a young man paralyzed in an accident, struggling for the people. Given the many people with dis- right to cease living. Along with my husband abilities who may be included among the and friends, I sided with the protagonist, "marginalized," the warning of psychia- never questioning his decision. After my trist Herbert Hendin threatens the disabil- accident, I saw the movie made from the play, ity population in the United States: "The and while I still identified with the young Netherlands? With a homogenous, pretty man, I thought, "Gee, this guy is making his much law abiding citizenry, almost all of move much too soon. He's not giving himself the chance to find out what it's like to live whom have medical coverage? And America, outside the hospital." In other words, as a with many different cultures represented, disabled person, my perspective changed. I many marginalized people, tens of millions no longer automatically accepted suicide as a without health care insurance? As bad as it good solution to disability. "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 145 So what is a better solution? I can only Not only did the jury consider Robert La- answer for myself. First of all, I've been timer's deed a mercy killing, but there also surrounded by people who fully expected me was an outpouring of public support for to come home from the hospital and pick up my life-my husband, my children and their Tracy's father. Disability advocates asked, spouses, a few good friends, and my nurses. however, why does the killing of a nondis- Their attitude has been-do it. At crucial abled child evoke outrage while the killing moments I met disabled people who inspired of a child with a disability is accepted? An- and guided me-a paraplegic woman when other question they posed concerned the I first entered the rehabilitation hospital, necessity for the medical procedures that and as I left the hospital, a young woman Tracy was forced to undergo to improve quadriplegic who became my mentor, for she her condition. "News accounts had created a fantastically independent life suggest for herself. Other disabled people along the the girl was relatively stable and happy way have been important to me, and of course before doctors started operating on her working with disability advocacy groups has to 'correct things." Was it these surgeries given a new focus to my life.⁸⁴ rather than the cerebral palsy that caused Tracy's reported suffering? Disability advo- Recognizing the significance of her acces- cates fear that the notion that killing a per- sible living quarters, as well as her pri- son with a disability is different from killing vate insurance-which provides her with anyone else encourages courts to condone care and equipment to achieve maximum physician-assisted suicide. independence-Rolnick continues, "Given Utilizing the joystick on a motorized the tools and the proper support, most peo- wheelchair, twenty-six-year-old Elizabeth ple with disabilities want to continue laugh- Bouvia, a college graduate studying for a ing, loving, and living." master's degree in social work, lived in- dependently in her own apartment with her husband until, over a short period of The Distinction between Severe time, everything she sought to accomplish Disability and Terminal Illness seemed to unravel: The following examples reveal how the dif- The dean of the program where she had planned to get her master's degree in social ference between severe disability and ter- work told her that no matter how well she minal illness easily may become obscured might do, there was not going to be a job by the courts. In making judgments, do at the end of her efforts. In despair, she courts value the life of a person with a dropped out of school, and the state then disability as much as the life of a nondis- took away the van it had made available for abled person? American disability rights ad- her transportation to and from school. Her little family fell apart as her husband vocates have seized upon the case of Tracy left her, and she suffered a miscarriage. Latimer, a twelve-year-old Canadian child She retreated back to her father's house, with cerebral palsy who was killed by her but together they decided this arrangement father, Robert Latimer, in 1993 by means of a would not be convenient for him. With her lethal dose of carbon monoxide.85 Although world out of control, she decided to take Tracy's father was convicted of second de- her own life. She checked into Riverside gree murder-a verdict usually carrying a Hospital in California and made the demand that she be kept comfortable as she starved mandatory life sentence without a chance of herself to death. Within a very short time, parole for ten years-the jury recommended the psychiatric staff of that medical facility parole after one year. had officially designated her as mentally 146 CHAPTER EIGHT competent, and the American Civil Liberties cian, had committed suicide with court ap- Union was in court pleading her right to this proval, Johnson-in the September/October bizarre form of suicide. 1990 issue of the Disability Rag-revealed her impression that Bergstedt, himself, was Although her disability, cerebral palsy, was never consulted regarding his life or death not progressive, the California Supreme decision. Court judged her 1983 bout with depression Founder of the Independent Living as an acceptable reason for allowing the Movement and winner of a MacArthur "ge- hospital to assist in her suicide. Bouvia's nius" fellowship, Edward Roberts, who like subsequent change of heart-her decision Bergstedt relied on a respirator, expressed to go on with her life-underscored the fact his feelings about the case: that the court would be highly unlikely to The whole thing is outrageous. I am getting accept depression of a nondisabled person angrier and angrier about these cases. They as suitable grounds for physician-assisted feed on each other. The attorneys, the courts, suicide.⁸⁷ the judges, they don't know anything. They In 1984, Mary Jane Owen, blind disabil- see somebody like Bergstedt, and they say, "Of ity activist, editor, writer, and former fac- course he wants to die." What's happening is ulty member of the graduate program in we're killing disabled people in this country social work at San Francisco State College, and then act like we're doing them a favor. It's outrageous. I've been on a respirator made this observation about the Bouvia, for twenty-six years, and I watch these case: "What we keep telling each other about people's cases. They're just as dependent on Bouvia illustrates more about how we feel a respirator as I am. The major difference about disability than it does about how this is that they know they're going to be forced young woman is dealing with her depres- to live in a nursing home-or they're already sion. She is trapped by the snare of our ter- there-and I'm leading a quality life. That's ror and prejudices. She has come to person- the only difference. It's not the respirator. It's the money. ify our horror of vulnerability, frailty and all the 'imperfections' of disability."88 Lacking the technology that would make The highly publicized requests for phy- it possible for him to live and work indepen- sician-assisted suicide by two other quadri- dently, thirty-four-year-old Larry McAfee, a plegics also were sanctioned by the courts. quadriplegic, clearly planned to commit sui- Without having ever met Kenneth Bergst- cide in 1989, a decision supported by the edt, a highly intelligent quadriplegic, Las court, the clergy, and his family. "McAfee, Vegas District Court Judge Donald Mosley who became disabled in 1985, won court ruled in June 1990 that a physician could approval to hook up a switch to his mo- sedate Bergstedt and then remove the respi- torized chair to allow him to turn off his rator upon which he depended for breath- own respirator and kill himself. Disability ing.⁸⁹ Using peculiar logic, Mosley deter- activists got involved, fought for other op- mined that Bergstedt's death in this man- tions for him, and showed McAfee the pos- ner would not be suicide; rather, Bergstedt sibility of community living arrangements would be regulating his medical care. Nei- [that] no one else (including those that ther a newspaper reporter who covered the [were] helping him win his death) had told case, nor Mary Johnson in her capacity as him about."⁹⁰ Once he acquired the oppor- editor of the Disability Rag, nor any disabil- tunity to function in the community (using ity activist was able to speak to Bergstedt a puff-and-sip motorized wheelchair) and directly. After Bergstedt, assisted by a physi- to work in the professional world (employ- "NOT DEAD YET" AND PHYSICIAN-ASSISTED SUICIDE 147 ing a voice-activated computer), McAfee "the mysteries of the universe with the mind changed his mind, for he found new mean- of a latter-day Einstein."⁹³ In 1963, Hawk- ing in his increasingly self-directed life. The ing, just twenty-one years old, working in 1992 made-for-television film dramatizing Cambridge on his Ph.D. in physics, was told McAfee's plight made no reference to the that he had two and a half years to live as role of disability advocates, who showed a result of ALS, a degenerative motor neu- McAfee how to live rather than how to die. ron disease that causes atrophy of muscles Like McAfee, who could utilize his pro- throughout the body. Inexplicably, however, fessional training and skills as an engineer Hawking continues to thrive beyond any when he was provided with the proper tools, reasonable expectation. With a voice synthe- many people with severe disabilities are liv- sizer, provided after his 1985 tracheotomy ing fulfilling and productive lives employing resulting from his bout with pneumonia, appropriate technologies. In 1992, a coali- and a small personal computer mounted on tion of six independent living centers of his wheelchair, his ability to lecture and to New York City gave its annual award for collaborate with other physicists, as well as outstanding achievement by a student with to publish books and articles, has not been a disability to an African-American teenager compromised. with cerebral palsy. Although he was orig- For Hawking, the knowledge that he had inally labeled as "retarded," once he was a severe disability seemed to act as a spur, given the chance to use computers to oper- focusing his intellect and his energy on his ate a power wheelchair, a voice synthesizer, study of cosmology: "Before my condition and a word processor, he was upgraded to had been diagnosed, I had been very bored very intelligent. While still profoundly dis- with life. There had not seemed to be abled, the youngster was no longer hand- anything worth doing. But shortly after I icapped in revealing his talents. 91 Disabil- came out of hospital, I dreamt that I was ity rights advocate Professor Frank Bowe, going to be executed. I suddenly realized who is deaf, draws a distinction between the that there were a lot of worthwhile things words "disability" and "handicapped": I could do if I were reprieved."⁹ In fact, a Our disabilities are not going to disappear, colleague suggested that Hawking's illness but what we can work on are the handicaps. may have made new creative possibilities In this room today I am not handicapped. I available to him: can talk to anyone here and you can talk to me because I have an interpreter. I am still As he gradually lost the use of his hands, disabled; I am as deaf as I ever was-as I was he had to start carefully choosing research this morning, as I will be when I go to bed projects that could be tackled and solved tonight. But I am not handicapped in this through geometrical arguments that he room. And because this room is accessible, could do pictorially in his head, and he people, whatever their disability, can get developed a powerful set of tools that nobody into it. So the people in this room are not else really had. So in some sense, when you handicapped. They are still disabled, but they lose one set of tools, you may develop other are not handicapped. This means that the tools, but the new tools are amenable to people in this room can do whatever their different kinds of problems than the old intellect, their knowledge, their training, their tools. That means certain kinds of problems ability enable them to do.92 you can solve, and nobody else can. Technology has allowed Stephen Hawk- As Intel vice president Stephen Nacht- ing, the world renowned British physicist heim observes, "Wherever Hawking rolls with a severe disability, to continue to pierce along the Gothic splendor of Cambridge I48 CHAPTER EIGHT or anywhere throughout the world, he has are a Paralympic champion. You have to be constant access to the Internet, a faster outstanding in absolute terms.⁹⁷ voice synthesizer and infrared remote con- Can the value of a life be judged by the trol of doors, lights and his personal en- degree of a disability? Can these lives of tertainment center."95 Nachtheim charac- people with serious disabilities be described terizes Hawking as "a man who does what as unworthy to be lived? Too commonly, he wants and tries to be minimally inconve- policy decisions reflect a confusion between nienced by his disability, so he uses all the terminal illness and disability, as well as an technology he can to overcome a problem." arrogance and complacency in judging the Making only passing reference to Hawking's value of a life, even for those who have not very apparent and well-known disability, a made world-shaking contributions. As Not I997 New York Times front-page article de- Dead Yet attorney Diane Coleman stated scribed the visit of "the brilliant theorist" in the conclusion of her 1998 congressional to the California Institute of Technology.⁹⁶ testimony, "Our society is wrestling with Hawking explains: what is perhaps the most pivotal issue of our time: whether a cost-benefit analysis I regard my disability like color blindness- will determine the value of a human life, something that is an inconvenience but whether people with disabilities, including which one can live with and get 'round. Obviously, my disability is more severe than terminal illnesses, belong in our society as color blindness, but to me it is incidental a part of humanity's diversity, or whether and does not shape my world view. The way we [people with disabilities] will be pushed, for disabled people to be appreciated is to subtly and not-so-subtly, toward the Final be successful. For the physically disabled, Exit solution."⁹⁸ this means being smarter than the next guy. No one is going to be impressed if you Chapter Nine Disability and Technology THE DISABILITY RIGHTS MOVEMENT "is goes beyond minimum codes and standards a by-product of the technological revo- to create designs that serve the broadest lution," in the words of one commenta- public [including people with disabilities] tor.¹ "Breakthroughs in medicine, the de- throughout their life spans."³ Wheelchair velopment of computers that allow the designer Ralf Hotchkiss describes the evolv- hearing and speech impaired to use tele- ing "revolution in human interaction," a phones, and advancements in motorized consequence of inventors, artists, and archi- wheelchairs have meant that more people tects who are redesigning the infrastructure with severe handicaps can live longer, can do and creating a new aesthetic for the chang- more for themselves and have the potential ing environment: "Without changes in how for enjoying fuller lives." Without political things are laid out physically, the changes of activism, however, technological advances mind [allowing for inclusion of people with do not automatically translate into gains for disabilities] will be slower to come."4 people with disabilities. Often involving subtle design changes and adaptations to already existing prod- ucts and environments, universal design Universal Design is more practicable and cost-effective than many people realize.⁵ For example, it is nei- "Growing up in a world full of barriers," ther difficult nor expensive to provide coun- the design pioneer Ronald L. Mace, a polio ters at a level that accommodates children survivor and a wheelchair user, had a clear and people in wheelchairs or to include la- incentive for creating his visionary concept bels with large type, readable by partially of universal design.² Not only did he have to sighted and older people.⁶ Yet too frequently be carried up and down stairs so he could at- lack of technical feasibility is one of the first tend classes at North Carolina State-from arguments offered against universal design, which he graduated in 1966-but also he observes disability rights advocate Professor could not fit his wheelchair into the men's Frank Bowe.⁷ room. Universal design is "the holistic ap- When universal design is disparaged de- proach" to accessible environments "that spite the compelling arguments for the con- 150 CHAPTER NINE cept, the real problem may be a lack of would be created by the size of the accessi- will to be inclusive, or more insidiously, ble unit. the profit motive masquerading as an effort JCDecaux's way of dealing with this sup- to protect the public. One glaring example posed dilemma was to create two separate involved the 1992 decision to set up an ex- and unequal units, an "elegant kiosk" for periment putting pay toilets, inaccessible to the general public and an accessible toilet wheelchair users, on the streets of New York for wheelchair users. The accessible unit City. The manufacturer, JCDecaux, wanted necessitated inconvenient special cards, as to impose the same unit on the United well as a full-time attendant, for-unlike States that he had sold in Paris and other the kiosk-it was not self-flushing and self- cities in Europe, where there is no ADA. cleaning. Howard misunderstood the im- The fallacious explanation given by JCDe- plication of the facts he offered: "The reg- caux for not providing a single model for a ular units averaged over three thousand street toilet in compliance with ADA and flushes per month, or 50 percent more than "universal design" was accepted in a New the average in Paris. The larger units re- York Times editorial: "Units large enough served for the disabled were basically un- for wheelchair users will inevitably accom- used, the cost of the full-time attendant modate unsavory activity like prostitution wasted." and drug abuse. The company therefore Rather than proving that the disabled insists that their [the accessible toilets'] use advocates were, as Howard referred to them, be restricted to disabled patrons who gain "unreasonable zealots" demanding a tech- access with key cards."8 nology for which they had no real use, Six months later, in an article "Toilet the disability community's refusal to par- Wars," subtitled "How a battle over hand- ticipate in the four-month street toilet ex- icapped rights is keeping those spotless periment was a political gesture. On the wonders off the street," New York mag- contrary, accessible street toilets would be azine appeared to have been persuaded very useful for wheelchair users, especially by JCDecaux's public relations campaign.⁹ women, who have great difficulty finding The same can be said for the American appropriate facilities. In fact, disability ac- Broadcasting Company's television mag- tivists were demonstrating that they would azine "20/20" in its segment aired three not accept second-class status. Moreover, months earlier, "There Goes Another Good consistent with the concept of universal de- Idea."¹⁰ Like the New York Times, New York sign, these "larger units" would have been magazine and "20/20" erroneously assumed accessible not only to individuals who use that it was the disability community who wheelchairs and other mobility devices, but was selfishly thwarting technological im- also to people with small children, baby provement. Philip K. Howard, in The Death strollers, luggage carriers, large packages, of Common Sense (1994), continued to as- and countless other things. sert the misleading notion that "in New After New York City had just completed York, the unintended consequence of the JCDecaux experiment, San Francisco is- giving the disabled the 'right' to do sued a Request for Proposals (RFP) for a everything in the same way was the im- street toilet, requiring compliance with the position of a de facto prohibition of side- ADA. It should be noted that in San Fran- walk toilets." The spurious case JCDe- cisco disability activists had more political caux made was that technology did not clout than in a megacity such as New York. exist to deal with the social problems that Also, unlike in New York City, public offi- DISABILITY AND TECHNOLOGY I5I cials in San Francisco were open to man- children-the tables require a relatively sim- ufacturers of street toilets other than the ple technological device enabling them to well-known and well-connected JCDecaux. be lowered and raised. These kinds of tables, Proposals came from places as far away as however, are rarely found in medical facili- Germany and Israel. These manufacturers ties. Physicians infrequently take advantage offered designs for single units, complying of the easy enlargement of typed material, with the ADA, that incorporated technol- using computers or copying machines, to ogy that solved the potential social prob- offer written instructions in large print for lems connected with the size of the acces- people who are partially sighted. Nor do sible units. At this point, JCDecaux sud- medical practitioners tend to utilize the denly revealed that it, too, had the tech- tape recorder to give written information nology to manufacture a single accessible to blind people. unit that would be safe on the streets of To allow for communication between New York City. Even when solutions to medical personnel and people who are hard technological problems are not immedi- of hearing, assistive listening devices, such ately evident, the will to find answers of- as the kind employed in theaters, are needed ten serves as a spur to creativity, just as a but rarely provided in medical facilities. Al- lack of determination precludes the solving though required by the ADA, sign language of problems. interpreters are seldom available for deaf Many people still blame the disability people during their medical procedures, as community for New York City's failure to demonstrated by the refusal of Mount Sinai provide street toilets after the four-month Medical Center to provide a sign language experiment.¹² Yet the reason for this fail- interpreter for Jeffrey Bravin, the deaf hus- ure was that the community boards, indi- band of a hearing pregnant woman attend- vidually, voted against the JCDecaux plan, ing Lamaze classes. 13 The center had ille- which included, with each public toilet, two gally discriminated against the husband, or three obtrusive advertising kiosks. Al- violating state and federal laws requiring though JCDecaux intended these kiosks to accommodations for people with disabil- add considerable profit to its operating ex- ities. Alan J. Rich, lawyer for the couple, penses, the community boards objected to said that "the birth was like a 'Marx having their neighborhoods cluttered with Brothers movie,' with Mrs. Bravin 'trying advertising. to interpret between contractions,' to ex- The New York Times misinterpretation of plain what Mr. Bravin was supposed to the accessible street toilet issue is no sur- be doing." prise considering the frequent failures of As with the installation of lifts on buses, even the medical profession to be sensi- accessibility in medical facilities requires tive to the concerns of people with dis- a new approach, relating rather common- abilities. Until the 1990s, entrances to-and place technology to the needs of people with bathrooms in-many hospitals were built disabilities. In 1990, the Center for Indepen- without consideration for wheelchair acces- dence of the Disabled in New York received sibility; in fact, bathrooms in many doc- a major grant from the Robert Wood John- tors' offices are still inaccessible. In order son Foundation to establish a primary care for examining tables to meet the demands facility, open to all members of the commu- of universal design," thus becoming usable nity, but totally accessible to people with by people with mobility impairments as well disabilities. 14 The Downtown Family Care as others-such as older people and small Center, opened in August 1995, marked the I52 CHAPTER NINE first time that a disability service and advo- Teletypewriters and Relay Systems cacy group, such as an independent living center, received funding to provide medical The Communications Act of 1934 ostensi- care in an environment consistent with uni- bly made the telephone accessible to every- versal design. The fact that this center was one. In reality, however, people with hear- an anomaly when it was conceived under- ing disabilities were excluded from utilizing scores the inaccessibility of many medical this technology because modern methods facilities, even in the 1990s. of telephone amplification, as well as the teletypewriter (TTY), were as yet not in- vented. Considering the numbers of people who are deaf or hard of hearing at birth Accessible Taxis (or at an early age)-combined with those whose hearing diminishes with advancing Although wheelchair-accessible taxis are years-a large segment of the population found in a variety of locations throughout could not take advantage of the telephone the world, some major cities have resisted without additional technology. Not until this much-needed technology. Most mini- the 1964 invention of the TTY could the vans that have been converted into acces- 1934 law be universally applied.¹⁶ The use sible taxis have, at the rear of the vehicle, of the TTY became increasingly widespread a lowered floor, a manual ramp, and a hy- after 1971 when a smaller, more compact, draulic "kneeling" suspension. Wheelchair and more affordable model was developed. users who drive this type of modified mini- Because of lack of consultation with van clearly demonstrate that this vehicle those being served by the TTY, a prob- is technically viable as an accessible taxi. lem arose regarding the naming of this Nonetheless, until as late as 2000 techno- new technology. Though in 1979 the TTY logical infeasibility continued to be the ex- was renamed the telecommunication device planation given for the unavailability of ac- for the deaf (TDD), the designation was cessible taxis in many cities such as New changed again in 1990 to text telephone (TT) York, the site of the largest taxi fleet in the when the TDD proved useful not only for country.15 deaf people, but also for others, such as The mechanical concepts for wheelchair people with speech impairments. Since the accessible taxis, similar to the techniques sign for TT in American Sign Language is used in accessible buses, have been avail- similar to the sign for toilet, the deaf com- able for many years. As a result of prod- munity insisted on returning to the TTY ding by disability advocates, technology- designation. similar to hydraulic lifts used to move goods A flashing light signals the "ringing" of on and off trucks-was applied to buses the TTY, a "telephone" comprised of a type- by the late 1970s. Employing either this writer and a narrow screen. The TTY allows technology or low-floor ramps, wheelchair- deaf people-by typing messages to each accessible taxis have proven to be a financial other-to communicate on the telephone. success, despite doubts about their prof- The relay system combined the technologies itability. As with accessible taxis, however, of the TTY and the telephone, enabling a too often both business and government deaf person and a hearing person to com- cling to rigidly-held, preconceived notions municate. Either the deaf person or the about the limits of technology despite evi- hearing person can initiate a phone call dence to the contrary. by dialing a special 800 number. Then, the DISABILITY AND TECHNOLOGY 153 operator acts as an intermediary between go further in a developing country than in the two parties, typing to the deaf person the United States. Yet the determination and speaking to the hearing one. Califor- of the disability community to refuse to nia was the first of only a few states with compromise about the elevator had been statewide relay systems until Title IV of the appropriate. Not merely a gratuitous time ADA required that one relay system func- or labor-saving convenience, the elevator for tion throughout the country by July 26, 1993. a person unable to climb stairs means inde- Whereas the law necessitating lifts on buses pendence, dignity, and equality. was a catalyst for employing available tech- nology, the TTY created the possibility for real implementation of an existing 1934 law. The One-Step Campaign Another illustration of an effort to employ a A Clash of Cultures commonplace technology that would serve people with disabilities, as well as older peo- When Mother Teresa, reflecting her ascetic ple and others, is the One-Step Campaign religious vision, refused to include modern that began in New York City in 1993. Be- appliances such as dishwashers and wash- cause of an architectural tradition in the ing machines in her planned New York City city, many apartment buildings, stores, and homeless shelter in 1989, she discovered that restaurants were built with a single step in the city building code required one of the front of their entrances. For most people mechanical devices she had rejected, the ele- who walk, a single step is hardly noticeable; vator. Not recognizing the danger-as well as for most wheelchair users, however, that the humiliation-to mobility-impaired peo- step is insurmountable without the burden ple, Mother Teresa intended to have them and indignity of securing help. Generally, carried up and down the stairs. Deriding building a ramp as a level-changing device the regulation mandating elevators, Philip is "readily achievable" under the ADA as K. Howard failed to grasp the significance of well as an improvement to business, for this traditional technology for a great num- an accessible establishment is available to ber of homeless individuals: "No person de- an increased number of customers, includ- cided to spite Mother Teresa. It [an elevator] ing those with baby carriages and shop- was the law. And what it [the law] required ping carts. offends common sense."¹⁷ For many low- Since constructing a ramp in place of a income people with disabilities for whom single step can be easily accomplished with stairs are a formidable barrier, the elevator little difficulty or expense, in most cases this is a necessity, not, as Howard contended, a modification is required by the ADA as well frivolous means of satisfying "middle-class as many local laws. The reason the One- standards." Step Campaign has been a greater problem Furthermore, Howard's indication that than disability activists had assumed is not Mother Teresa's Missionaries of Charity related to the alterations required. Rather, abandoned their intention to build a home- the difficulty stems from the inability of too less shelter in New York City because of their many business people to alter their think- problem with the elevator is inaccurate. 18 In ing and appreciate the benefits that would fact, they did not leave New York City be- accrue-not only to the general public, but cause of the elevator controversy, but rather to their own financial interests-by replac- because they decided that their funds would ing single steps with ramps.¹⁹ I54 CHAPTER NINE Wheelchair Ingenuity The foremost U.S. wheelchair inventor and designer, as well as the leading dis- People with motor impairments not only seminator of information on wheelchair required changes in the built environment, technology worldwide, Ralf D. Hotchkiss but also ingenuity in wheelchair design. Al- received the prestigious 1989 MacArthur though the I937 Everest & Jennings (E&J) Award and the I994 Henry B. Betts Award. wheelchair patent was an improvement over Setting an example for originators of assis- the former model, further modifications tive technologies for people with disabili- were stifled by E&J's monopolistic control ties, Hotchkiss eschews patenting his mo- of the wheelchair market.²⁰ A combina- bility devices. Instead, he leaves them in the tion of the 1977 United States Justice De- public domain in order to encourage the partment antitrust lawsuit and the newly- continuity of the creative process, thus en- emerging wheelchair industry terminated deavoring to prevent a reoccurrence of the E&J's national and international strangle- E&J fiasco. hold on the production and distribution Not beguiled by high-tech glamour, of wheelchairs. Moreover, between the 1940s Hotchkiss prefers practical solutions that and the 1980s, the lack of rehabilitation en- benefit the greatest number of people at gineers with disabilities played a significant the least cost. For example, he indicates that role in the failure of wheelchair moderniza- more people will be served by inexpensive, tion. Competition did not serve wheelchair easily repairable, customized wheelchairs users until the early 1980s.2¹ With the dra- and barrier-free environments than by ex- matic increase in the number of wheelchair- travagant technologies such as computer- using rehabilitation engineers, as well as the ized walking stimulators for people with variety of innovations springing forth from spinal cord injuries.²³ In addition, he has diverse parts of the world, wheelchair design realized that increasing the mobility of has been revolutionized. wheelchair users enhances the employment Because of the devastating effects of opportunities of people with disabilities, a violent conflict, disease, and inadequate demographic group dramatically underrep- medical care, developing countries-often resented in the workforce of every country. plagued by rough terrain and limited ma- Echoing Roberts's and Heumann's accom- terials-have been a source of creativity plishments in the World Institute on Dis- in the construction and maintenance of ability and appreciating the common con- wheelchairs. As Ralf D. Hotchkiss explains: cerns of wheelchair riders, Hotchkiss's focus on disability issues is international. There's a level of hands-on understanding In 1989 at San Francisco State, Hotchkiss that a lot of Third World bike builders established the Wheeled Mobility Center, and blacksmiths have that can inform from which his International Wheelchair the application of our new mathematical optimization [wheelchair] models. You need Program emanates, serving both students to mix the new with the old. With rougher on campus as well as in the developing roads and fewer cars, they [wheelchair users countries to which he travels. Although in developing countries] have far more use Hotchkiss fears that the task exceeds hu- for all-terrain wheelchairs. With far less man ingenuity, he seeks to devise a wheel- money to buy new chairs, many more riders chair that can traverse unpaved rural areas repair, modify and improve their own chairs. By helping them network and share their and yet maneuver easily in a home. Be- developments, we have tapped into a gold cause wheelchair users understand the re- mine of new wheelchair designs.²² quirements of other wheelchair users like DISABILITY AND TECHNOLOGY I55 themselves, Hotchkiss encourages the in- ever, are rarely produced although the tech- clusion of people with disabilities in rehabil- nology is available. Modular design is a itation technologies. Furthermore, he has significant engineering technique because observed in his travels all over the world modular and folding wheelchairs and scoot- that people tend to trust the technical ex- ers usually fit in automobiles, adding greatly pertise of others living with similar impair- to the mobility of the user. ments. Recognizing that there are twenty In Andrew Wyeth's famous 1942 painting million people-predominantly in devel- "Christina's World," a young woman dis- oping countries-in need of wheelchairs, abled by polio is sitting on the ground look- Hotchkiss's ultimate goal is to set in mo- ing out on her limited vista.2⁴ John Hock- tion the education of an army of sixty enberry, in his 1995 memoir Moving Viola- thousand professional technicians build- tions: War Zones, Wheelchairs, and Declarations ing and repairing wheelchairs. Hotchkiss's of Independence, and in his 1996 one-man creativity is in direct contrast to the early performance Spoke Man, described his ex- wheelchair manufacturers, whose closed periences as a wheelchair-riding journalist, minds were reflected in the inflexibility of traversing the world.² The circumscribed their wheelchairs. view of the subject of Wyeth's painting is Before the new approach to wheelchair being supplanted by the free-wheeling and technology that Hotchkiss embodies, mod- liberating vision of Hockenberry's work. els were not adapted to the needs of the individual user as is, for example, the fluid aerodynamic prototype employed by the Accessible Classrooms and modern wheelchair athlete or wheelchair Laboratories dancer. Not only do modern motorized and computerized wheelchairs and scoot- Exhibiting a resourcefulness reminiscent of ers suit the technology to the consumer, Hotchkiss's ingenuity, mechanical engineer but they also serve people with different Ira Cochin of the New Jersey Institute of kinds and degrees of disability. Unable to Technology and biologist Ben Van Wagner propel the chair by themselves until the of Fresno Pacific College created innova- invention of these assistive devices, many tive classrooms and laboratories. In 1977 quadriplegics were indeed "bound" by and Cochin, who was blind and later became "confined" to their wheelchairs because deaf, devised instruments-in what he called the chairs did not offer freedom of inde- the Macrolab-so that people with sen- pendent mobility. With older people's in- sory and speech impairments could be inte- creasing acceptance-and society's decreas- grated with nondisabled people in schools ing stigmatizing-of motorized scooters, and industry. For example, Cochin con- advancing age no longer deters many peo- nected an oscilloscope to a microphone so ple's participation in the social mainstream. that deaf (as well as hearing) students lit- Moreover, increasingly manufacturers are erally could see how frequencies changed employing modular design, which refers to by viewing sound waves on a screen. With detachable units or components of mech- Cochin's instruments, blind people-by in- anisms. With modular design, wheelchairs terpreting sound-were able to determine and scooters may become reasonably priced the chemical constituents of a product, us- and easily repaired so that users may have ing a modified spectrometer, and to accu- control of their assistive devices. Folding rately measure weights up to a milligram, and modular motorized wheelchairs, how- using a precision balance scale. Referring to I56 CHAPTER NINE the "designing" of an early speech synthe- The Computer as an Accommodation sizer at the lab, William Skawinski, blind chemist at the New Jersey Institute of Tech- The computer serves not only those with nology who directed the Macrolab, indi- multiple chemical sensitivity and motor im- cated that the key to the program was that pairments, but also many others with a va- the students served were involved in the riety of disabilities. Better than the TTY development of all of these instruments. and the relay system, the new "informa- After his own careful research and much tion superhighway" will allow deaf people to medical consultation, Ben Van Wagner cre- use a telephone that includes an interactive ated an environment that no longer precip- television monitor. Consequently, they will itated "sick-building syndrome." Van Wag- be able to employ the language they gener- ner, a professor of science education, de- ally consider most natural, sign language. scribes how he felt when he was diagnosed Just as this new technology can serve as with multiple chemical sensitivity: "The tox- ears for deaf people, the Kurzweil reader ins of the synthetic 1990s had finally weak- and computer add-ons, such as the voice ened my immune system," Van Wagner ob- synthesizer and Braille keyboard, can pro- serves, for "I was suffering from extreme vide eyes for blind people. For example, fatigue, lightheadedness, and arthritis so although totally blind, Dr. Peter Torpey- bad that I could barely walk." Van Wagner who has not required eyesight to pursue feared that since he had become allergic to the ideal color-printer in seventeen years of formaldehyde, he might not be able to go creating software-types with a Braille com- on teaching. puter keyboard at the Xerox Corporation.28 Still undaunted, Van Wagner persisted in Computers also accommodate many peo- his probing and ultimately discovered the ple with cognitive and learning disabilities, solutions that he was seeking: as well as those with autism: "for many autistics, the internet is Braille."2 Temple I have adapted my zoology courses so as to use Grandin, author of Thinking in Pictures: And alternative dissection materials from the local Other Reports from My Life with Autism,30 seizes fish market, non-formaldehyde substitute on the internet and the web as "the best specimens and computer technology. possible metaphors for her own brand of My college has allowed me to establish thinking." In response to one critic's obser- a new "toxin-free" classroom outside of the official science building and has provided me vation that Thinking in Pictures has "occa- with an excellent office with a window that sional signs of autism, abrupt transitions, opens, which frees me from my air-tight sudden leaps of thought not easy for the office As I continue to research the issue reader to follow," Grandin says, "I'm going of Environmental Illness, it is apparent that to write another book in which I try to it is a significant problem for many students explain how associative thinking [leaps of and adults. thought] works like links on the internet." People who are unable to use their hands People with disabilities, including those because of, for example, paralysis or severe with sensory and speech impairments and repetitive strain injury are still capable of us- multiple chemical sensitivity, can be suc- ing voice-activated computers by means of cessful students and employees when they software such as IBM's Dragon Dictate. 31 In are afforded appropriate, reasonable accom- the early 1990s, veteran New York Newsday re- modations. porter Susan Harrigan developed a serious case of carpal tunnel syndrome resulting DISABILITY AND TECHNOLOGY 157 from her typing on a computer keyboard.³² gan by examining one easy-to-track disabil- She credits her use of a voice activated com- ity, spinal cord injury. Consistent with the puter, in combination with the ADA's "rea- employment statistics for the general dis- sonable accommodation" requirement, for ability population, only one-third of those the opportunity to resume her career. After with spinal cord injuries were employed. Yet Christopher Reeve became a quadriplegic those who were already computer literate because of a horse-riding accident, Dragon before their injury found jobs faster than Dictate enabled him to continue using a those who did not have computer skills. computer. Brian Dickenson, who has ALS- Of those employees with spinal cord in- "which has stripped him of the power to juries, two-thirds used computers on the speak, swallow, move his legs or arms, wiggle job. There was no salary gap between em- his fingers or turn his head"-is still able ployees with spinal cord injuries and non- to work as a columnist for the Rhode Is- disabled employees when both groups were land Providence Journal-Bulletin, using his eye computer users. Those employees with spi- movements to write on a computer employ- nal cord injuries who were not computer ing the Eyegaze system.³³ users had an income 36 percent lower than Furthermore, advances in telecommuni- their nondisabled counterparts. cations have ushered in choices heretofore Although Brewer observes that a partner- unavailable to people with disabilities, such ship was developing between industry, gov- as the option of bringing the workplace or ernment, research organizations, and the classroom into the home by means of com- disability community regarding web access, puter technology. Computers function in- she finds no such industrywide interest teractively so that students with disabilities in working with the disability community can use distance learning to participate in in the development of computers them- the classroom and employees with disabil- selves. For example, accessibility and costs ities can take part in workplace activities, still are significant deterrents to getting even though they are not physically present. computers to people with disabilities. Paul Moreover, virtual reality technology is being Schrader, director of the National Techno- used as a tool, preparing people with disabil- logical Program at the American Founda- ities for real-life situations.³ Judy Brewer- tion for the Blind in Chicago, notes that director of the Web Accessibility Initiative despite the later improvement in the sys- International Program at the World Wide tem for people with visual disabilities, when Web Cambridge Consortium-points out Windows-the visually-based operating sys- that not only is it incumbent on people with tem for Microsoft-opened, the door was disabilities to learn new technologies, but closed for blind people.³ they must also claim them as they are evolv- While computer costs have decreased, the ing, as illustrated by the interaction between prices are too often out of reach for people the disability population and individuals with disabilities, many of whom are un- developing technical guidelines for writing employed or dependent on limited bene- accessible web pages.³ fits. Disability advocates suggest that since Evidence that computers tend to level the computers become obsolete so quickly in playing field, thus minimizing the limit- corporate America, procedures could be im- ing effects of disability, was presented at plemented to make these no longer state- the May 1998 New Orleans conference of of-the-art computers available to people the President's Council of Employment of with disabilities. Given the multiplicity of People with Disabilities. The researchers be- web sites particularly geared to people with I58 CHAPTER NINE specific disabilities, the internet is an es- chopharmacology may be resulting in cos- pecially valuable resource for this popula- metic drugs devised to produce specific tion. Having diminished less quickly than personality changes or to induce docility the cost of computers, the cost of add- or, even worse, pharmaceuticals that im- on technology-necessary to make comput- pair brain activity much like amphetamines ers accessible for those with a variety of or cocaine.³ Moreover, the specter of ris- impairments-doubles the price of comput- ing health expenditures has elevated cost- ers for many people with disabilities. Just as effectiveness to such a premium that the including access into the original plan of a quick-fix of chemical treatment appears to building is simpler and less expensive than be the present-day panacea, replacing more renovation, designing access into new com- time-consuming, personal, and expensive puter technology is easier and less costly psychoanalytic procedures. than add-ons. Besides, consistent with the Cognizant of the pharmaceutical indus- concept of universal design, much of the try's search for expanded markets, advocates computer technology developed to accom- for children with psychiatric disabilities are modate people with disabilities ultimately apprehensive about the speed with which serves the general population. antidepressant drugs-never approved by the Food and Drug Administration for children or adolescents-have flowed into Psychopharmacology the children's market: "Critics worry that not enough is known about how an- Just as computers have opened new possi- tidepressants work on the growing brain bilities for many people with physical im- and that cost-conscious insurance compa- pairments, the development of new phar- nies will turn too quickly to drugs in- maceuticals has removed barriers for many stead of costly psychotherapy."⁴⁰ Although of those with severe psychiatric problems. roughly three million children have severe Such people no longer feel as restricted depression and over two thousand between by their disabilities-in their professional the ages of five and nineteen commit sui- as well as their personal lives-as they did cide every year, most of the antidepressant before the advent of these drug therapies. medicines prescribed for children have been Yet psychopharmacology is a double-edged based solely on medications for adults.⁴¹ sword, requiring those who employ this new Without denying the possible value of the technology to confront critical issues. appropriate use of drug therapy in specific According to Dr. Peter Kramer, author of instances, Dr. Leon Eisenberg, professor of Listening to Prozac, new medications serve social medicine at Harvard Medical School, many people with psychiatric disabilities is concerned about the effect on youngsters who would never be open to psychoana- of the change in the practice of medicine. lytic approaches.37 Yet even about his pa- "Managed care and psychotropic drugs are tients on psychotherapeutic drugs, Kramer a Satanic mix," Eisenberg warns. observes, "When medication altered their In addition, disability advocacy groups- temperament, as occasionally it appeared such as Citizens for Responsible Care in Psy- to do, my response was ambivalent. Yes, chiatry and Research-and bioethicists, as the men and women attained relief, but well as federal and state agencies, question perhaps something precious was lost in the ethical appropriateness of experimen- the process. Peter R. Breggin, author of tation in which researchers either use drugs Toxic Psychiatry, adds that the trend in psy- that provoke psychotic symptoms in psychi- DISABILITY AND TECHNOLOGY I59 atric patients or deprive these patients of chotic episodes." Describing himself as be- the medications they require: ing used as a "guinea pig," Andrew Brown- stein, a person with severe manic-depression Federal ethics officials estimate that there and a subject of a study at the National have been one hundred to three hundred Institute of Mental Health, comments, "I experiments in which patients were taken off their medicines when no new medicines don't know how doctors can watch you be were being tried; rather, they were taken off in that kind of pain and not do anything." their medicines to observe the patients as In Conquering Schizophrenia: A Father, His they relapsed in order to study the illnesses. Son, and a Medical Breakthrough, Peter Wei- Among those experiments were some in den describes the remarkably beneficial ef- which potentially toxic drugs like PCP, a fects that new pharmaceuticals have had on hallucinogen known as "angel dust," and ketamine, an anesthetic related [to] it, were his schizophrenic son.43 Not available un- given to provoke patients into relapses.⁴² til 1997, these drug therapies significantly improve the functioning of schizophrenics Dr. John K. Hsiao, a psychiatrist represent- without side effects, Weiden states. In ad- ing the National Institute of Mental Health dition, he points out that although psy- in Bethesda, Maryland, indicates that al- choanalysis may work with neurotics, even though nothing should be done that could Freud acknowledged that talking therapy is permanently harm patients, "We can ask not as effective for schizophrenics. Marvin patients to put up with an exacerbation of Spieler, who refers to himself as "a mentally symptoms. They should be given a chance ill consumer," says, "My illness will be with to contribute to science We don't have me until I die. I take my 'pink beauties' animal models to study, so we have to do as I call lithium carbonate to maintain my what work we can in humans." sanity. For I know without them the gates On the other hand, Dr. Adil Shamoo- of Riker's Island [a New York City prison] a biomedical ethicist at the University of or worse will open for me."44 Despite the Maryland at Baltimore County-who for dangers these pharmaceuticals pose, expe- years has studied the use of vulnerable peo- riences such as Weiden's and Spieler's will ple as subjects in experimentation, notes, encourage the continued development of "Many of these experiments give no med- such technology. ical benefits to the subjects. There have been several attempted and successful sui- cides among the subjects of the experi- Bioethical Dilemmas ments. There are no other kinds of medical experiments in which you induce the dis- Decisions regarding the appropriate uses ease in humans to study it." In Fall 1997, The of technology require reference to real hu- Journal of Neuropsychopharmacology reported man beings in specific circumstances. Given on controversial experiments: In one, "thir- the new procreative alternatives with which teen men and women with schizophrenia people are presented by biological and ge- were not only taken off their medicines, netic engineering, who could criticize the but then injected with ketamine to pro- desire of prospective parents to use this voke psychotic symptoms in the subjects technology to prevent their baby from be- so the symptoms could be studied"; in an- ing born with sickle cell anemia or cys- other, "thirty-eight patients were given a tic fibrosis? Yet the capacity to create de- drug called methylphenidate, which quickly signer offspring-with predetermined phys- threw 60 percent of them into severe psy- ical characteristics, intelligence quotients, I60 CHAPTER NINE or personality traits-is too reminiscent of in conjunction with intensive therapy by the distorted vision of the eugenicist. Even skilled professionals. Dr. Randolph Mal- the technology that allows expectant par- lory, director of the Deafness Rehabilitation ents to acquire increasingly detailed infor- master's program at New York University, mation about the fetus creates new ethical questions the value of procedures such as and pragmatic problems. The practice, in this one, suggesting that perhaps we should some parts of China, of aborting female accept being deaf as "another way of being fetuses in order to produce sons rather in the world and involvement with Deaf than daughters has become prevalent be- culture as a reasonable alternative" to main- cause of the "one child per couple" dic- stream society.47 On the other hand, critics tum, employed to reduce the population. of this view argue that the focus on Deaf We may agree that the moral issue, as well culture has been excessive, given the great as the resulting gender imbalance, necessi- number of Americans who have sufficient tates education and perhaps stronger mea- hearing loss to affect communication, ap- sures to discourage this misguided and po- proximately twenty-eight million, and the tentially dangerous use of new reproduc- relatively small number of this population tive technology. who use American Sign Language, roughly How do we deal, however, with a response one-half million.⁴ by some deaf couples to a new option? Commenting on the ethical issues con- Learning they could choose to abort if the cerning conjoined (Siamese) twins, Dr. Alice fetus had inherited their predisposition to D. Dreger, a historian of anatomy, notes deafness, they indicate, on the contrary, that the implications of this condition go that they would choose to abort if the beyond its rare occurrence of one in fifty fetus did not inherit their deafness. Do thousand to one hundred thousand: we accuse them of limiting their child's horizons? Or do we accept the argument Dr. Dreger and others who share her views that the deaf community's isolation from see parallels between medical attitudes the mainstream has resulted in a unique toward conjoined twins, and toward those children born with other anomalies, including culture and language that this couple might ambiguous genitals, dwarfism, congenital seek to protect as a cherished legacy? deafness, and the like. Such conditions Although the surgical procedure known have invited aggressive attempts at fixing as a "cochlear implant" tends not to be often through a long series of operations, controversial for postlingually profoundly medications and rehabilitations; and most deaf adults, do we recommend cochlear have required that the therapies be performed implants for children who are prelingually on children too young to have a say in whether they want to be treated or not. profoundly deaf? While these devices that [Dreger] argues that decisions about who provide electrical stimulation to the audi- is in pain and who should be fixed- tory nerve have been used successfully since whatever their purported abnormality- about 1980, language acquisition was con- must go beyond mechanical, economic sidered more difficult when first exposure to or even philosophic considerations, to sound came from a cochlear implant, rather include the voices of those who know than from the exquisite natural hearing of best [people who live with the condition and who are capable of commenting an infant.⁴ Yet by the late 1990s, prelin- on it.]49 gually deaf children with profound hear- ing loss were able to develop understanding Bioethicist Dr. Alan Fleischman observes and speech by means of cochlear implants the tension in the dominant culture-in- DISABILITY AND TECHNOLOGY I6I creasing accommodation of the disabilities tist professor Jim Crow. Nevertheless, Dr. in adults with simultaneous decreasing tol- Allen Crocker, scientific advisor to the Na- erance of abnormality in children: "We'll tional Down Syndrome Congress, is skepti- blame families if they knew there would be cal of what he considers a still scientifically an abnormal child but chose not to abort," unproved formulation, supported only by Fleischman fears. anecdotal evidence. Since parents usually function as the ad- Dr. Lawrence Leichman, however, found vocate for their disabled child, how do we what he calls "scientifically significant" dif- judge the 1983 case of Baby Jane Doe, a new- ferences between those of his many pa- born with spina bifida?⁵⁰ Given a negative tients with Down syndrome who were tak- prognosis, the baby's parents refused the ing Lawrence's formula and those who shunt operation that could have drained the were not. Leichman describes Lawrence's fluid from their infant's brain, and probably approach-dealing with Down syndrome would have improved her medical condi- as a treatable genetic problem-as "revolu- tion. Based on a more optimistic medical tionary because this is something parent- judgment, the government sued the baby's led, not physician-led, not scientist-led. In- hospital, arguing that she was entitled to stead, there's a group of parents, and it's the surgery as a civil right according to Sec- now become a very large group of par- tion 504 of the Rehabilitation Act of 1973. ents, who said, 'We want to do something When, as in the Baby Jane Doe case, differ- more for our children. Will you help us? ent physicians offer diametrically opposite If not help us, will you not stand in our prognoses about complex technical proce- way? If not stand in our way, will you at dures, what criteria can parents use to make least follow us?' And that is revolutionary a serious medical decision? in medicine." How reliable can we consider medical re- Upon what criteria should those mak- search initiated not by scientists and physi- ing life or death determinations regard- cians, but by parent advocates of chil- ing who gets a donated organ-surgeons, dren with disabilities? If the impairment, nurses, psychiatrists, and social workers- as in Down syndrome, is progressive, and base their decisions? Without interviewing the promising parent-directed therapy is the patient, the medical centers at Stanford at worst harmless, some parent advocates University and the University of California contend that they cannot wait for well- at San Diego rejected Dr. Philip Bach's ef- controlled, large, randomized, double-blind fort to sign up Sandra Jensen, a woman with studies. With only a high school education, Down syndrome, for a heart-lung trans- self-taught Dixie Lawrence, who formerly plant. Because the doctors thought she ran an adoption agency for severely disabled would not be able to follow the complex children, challenged the medical establish- schedule of post-transplant drugs, they con- ment after she adopted a one-year-old baby sidered her a poor risk for scarce organs. As girl with Down syndrome.5 The results of the New York Times indicated: the nutritional formula Lawrence devised, now taken by over fifteen hundred children They picked the wrong woman to reject. Ms. with Down syndrome, including her own Jensen, a lifelong advocate for the mentally daughter, is deemed hopeful by physicians disabled, was on hand when President George Bush signed the Americans with Disabilities and scientists, such as pediatrician Dr. Pe- Act in 1990. She and her friends raised a. ter Wallstein, Down syndrome researcher ruckus. Both medical centers eventually Dr. Lawrence Becker, and nutritional scien- relented and she got her transplant at I62 CHAPTER NINE Stanford in 1996, although she died six of life, doctors did not close the spine, so months later of complications unrelated to the babies were allowed to get infections her mental disability. and die in the hospital. With improved antibiotics-and shunts to relieve the pressure In order to reconsider ethical dilemmas and of hydrocephalus-by 1960 doctors did standardize procedures pertaining to the close the spine, and these babies did not process by which candidates for transplants have to die or be developmentally delayed. are selected, new federal regulations were But since there still weren't that many published in late March 1998. women around with spina bifida who had given birth to babies, doctors had neither Rather than regulations, however, many experience nor literature to help these bioethical dilemmas require case-by-case expectant mothers. judgments. Should we encourage the wo- man with multiple sclerosis, who has dif- On the internet, Scheer fortunately found ficulty walking, to use a motorized scooter an especially knowledgeable and creative ob- if the stigma she experiences outweighs the stetrician in California who consulted with advantage of her increased mobility? How her team of doctors in New York City. Work- do we reply to the student in a wheelchair, ing together on many of her difficult medi- who could easily attend school employ- cal issues, they developed a rotating sched- ing distance learning, but instead chooses ule of antibiotics for Scheer. She describes not to take advantage of the technology one Memorial Day when she was experienc- because he prefers the socialization inher- ing very debilitating symptoms: ent in being physically present in school, even if it may require arduous and costly My gastrointestinal specialist spent his travel? People are best served by solutions entire vacation day searching the internet provided not for categories or types, but and faxing me a stack of articles that we tailor-made for a particular person in a spe- could use to deal with my condition. This cific situation. doctor had already figured out a way to stop my contractions, which had occurred dangerously early in my pregnancy. He halted the labor by using a pump that The Internet and a Miracle Baby administered medication continuously, and with a monitor I could mark the contractions Susan Scheer, a brilliant Yale graduate with twice a day. When I stuck the monitor into spina bifida,53 who had held several signif- the computer, it could be read in Atlanta, icant positions in New York City govern- and they could readjust the medication ment, received the individualized care ap- when necessary. propriate for her unusual medical needs.⁵ After learning that she was going to have a She also received a great deal of sup- baby, Scheer discovered, using the internet port from people she met on the internet and email, "a wonderful network of people" through "Disabled Mommies," one of the who helped her with her pregnancy and de- chat rooms of America Online. With some, livery, as well as with caring for her infant she extended the relationship using email. daughter, Melissa, who doctors referred to In this way she got to know thirty-two moth- as "a miracle baby": ers or pregnant women with disabilities, a few even with spina bifida, who told her Because it was assumed that babies with about their experiences with pregnancy and spina bifida would not have a good quality motherhood. DISABILITY AND TECHNOLOGY 163 Medical and Genetic Information tutions, accessing people's medical records without their consent, often without their Because she orchestrated the use of the in- knowledge." Dr. Francis Collins, director ternet herself, Scheer could be certain that of the National Center for Human Genome the technology would be used to serve her Research, refers to the impediments im- own purposes. Yet when institutions deter- posed on patients and physicians to ensure mine how computers store, retrieve, and the privacy of medical records: "The system process medical information, people may forces people to take drastic steps to protect have cause for apprehension. Inasmuch as themselves. It is putting a terrible burden computers are altering diagnostic proce- on patients. [Doctors] are forced sometimes dures dramatically, many medical profes- to have interactions with insurance agents sionals, especially in the mental health field, or with other physicians or with HMOs are concerned that the uniqueness of the where [doctors] have to pretend [they] don't individual is being disregarded. In fact, in- have the information. It's a very strange stead of being dealt with as individuals re- dilemma-to choose between patient con- quiring appropriate treatment specifically fidentiality and telling the truth.' designed for them, too often patients are On the other hand, Larry Gostin, George- being lumped into categories for short-term town University law professor, makes a co- cost-effectiveness. gent argument for sharing medical infor- This approach is driving the prevailing mation: "We have a huge amount of data trend in health care delivery in the United about a whole range of diseases-cancer, States. For example, in an effort to curb heart disease, schizophrenia. But all this costs, an increasing number of companies information is kept by an individual doc- are employing new computer technology to tor or managed care organizations. If we measure treatment of workers with psychi- could have systematic, retrospective stud- atric disabilities as therapists compare the ies to look back at diseases, there would symptoms of their patients with "a data base be a great deal of information we could of hundreds of similar cases."55 Maryland find out." Information privacy consultant psychiatrist Dr. Harold Eist responds, "It is Robert Gelman refers to the capacity to astonishing that someone could even pro- track down the names of women who took duce outcomes studies. The doctor-patient the anti-nausea drug DES while they were relationship is as much ruled by art as by pregnant. As a result of collecting this in- science. Medicine is too complex, individ- formation requiring access to many medi- uals and their experiences differ so much, cal records, health researchers were able to and there is so much chaos in biology that make the link between the drug and certain looking at outcomes studies can never di- cancers in the children of these women. rect you to what the appropriate treatment Genetic testing has been introduced into for any individual would be." clinical practice at a time of decreasing Moreover, A. G. Greitenstein, director of privacy and confidentiality resulting from the Justice Resource Institute, warns that computerization. The New York Times re- with computers there is less security than ports that "it has become increasingly clear with paper charts: "We don't have someone that the Human Genome Project, the plan policing the gates. So you have a huge op- [initiated in 1990] to sequence human DNA portunity for folks that are not supposed to and map the position of human genes, be looking at people's records within insti- would have to turn into a project in com- I64 CHAPTER NINE puter science." Thus two technologies, about what to tell your children or, indeed, computer and genetic, have fused: "the com- whether to have children. So the information puter is the management vehicle, the lan- is quite powerful. And this information feeds guage to decipher, download, organize, and on existing inequities in our system. We can't currently protect persons who know manipulate genes," explains Jeremy Rifkin, they are at risk for certain diseases or, in author of The Biotech Century.⁵ Despite fact, have certain diseases, with respect to the potential medical value, computerized health insurance or employment. We DNA sequencing and genetic mapping raise can't yet assure you that the information, unprecedented questions. should we get it, would be protected and kept How do we determine what bioethicist confidential. Adrienne Asch refers to as "the fair use of genetic information for both medical and When a patient informed her insurance non-medical purposes, such as employment company that she had a mutated gene that or insurance?"6 How do we ascertain the significantly predisposed her to breast can- social repercussions of providing individu- cer, her request for coverage for removal of als and families with information regarding both breasts was denied on the grounds that their genetic predisposition to illnesses and she already had a preexisting condition, a disabilities? Patient advocate Mary Jo Ellis genetic defect, when she took out her health Kahn points out the conflict between the policy.⁶ Twenty states have passed laws pro- promise of a breast cancer cure that the hibiting health maintenance organizations Human Genome Project provides and the and health insurance companies from in- legal and ethical problems that lag far be- creasing the cost of insurance for people hind the scientific breakthroughs: "I am a who have a gene mutation. Yet many peo- breast cancer patient with a family history, ple belonging to support groups of families and I have two daughters, and although with different genetic disorders believe that finding out our genetic status may be very they have encountered not only insurance useful to the family to learn who needs to discrimination but also employment bias be followed more carefully and what med- because of their condition. ical care we should receive, it's too dan- In late 1996, companies marketing tests gerous at this point because my daughters to determine whether or not women have could lose their health insurance based on the gene mutations that significantly in- just testing."6 crease their risks for breast or ovarian can- Reiterating Kahn's concern about health cer informed physicians of the potential insurance, Patricia King of Georgetown Law for insurance and job discrimination. In School notes other problems-such as pri- addition, physicians were advised that the vacy of information and accessibility of Equal Employment Opportunity Commis- medical care, as well as discrimination based sion's interpretation of the language in the on an individual's genetic traits: ADA indicates that discrimination based on the results of genetic tests is unlaw- Not only do you have a problem getting ful. However, the EEOC's associate legal health insurance; you may have a problem counsel, Peggy Mastroianni, warned that getting employment because, remember, this opinion has not yet been tested in the most health insurance in this country is provided for by employers. Health insurance courts. Apprehension regarding discrimi- is expensive. So you not only have to worry nation resulting from genetic testing has about your coverage; you have to worry about broad implications, for tests have been- your employment. And you have to worry and are being-developed for other diseases, DISABILITY AND TECHNOLOGY 165 such as cystic fibrosis, Huntington's disease, more subtle and specific" than what Dr. Su- and an inherited form of ALS.⁶³ san Love-surgeon, researcher, fund-raiser, Other issues involving the value of these and breast cancer activist-calls surgery, ra- tests remain unresolved. First, the fact that diation, and chemotherapy: "slash, burn, a person tests positive for a specific gene and poison." To illustrate, if a woman mutation does not mean that the individual got breast cancer because of a specific mu- will contract the related disease. Second, in- tation on a particular gene causing un- formation about an individual's probability controlled growth-as opposed to modu- of contracting a disease does not ensure lated growth, which occurs in normal cells- that appropriate treatment exists for that scientists would figure out an injection condition, as in the case of breast cancer. to turn the mutated gene off.66 This po- Finally, it is often difficult to weigh the tential paradigm shift, more likely to be medical benefits of presenting an individual available to the next generation than this or a family with information concerning one, is comparable to the 1960s conversion predisposition to disease against the psy- from radical mastectomy to present surgi- chological toll. cal techniques, radiation, and chemother- Furthermore, how can we discourage the apy. Because the medical community has patenting of DNA sequences, the raw ge- not kept up with the research, Love, de- netic data? Instead of publishing the re- spite her skepticism, still uses current tra- sults of new research, biotech firms tend ditional procedures, for nothing else has to keep "intellectual property" secret, even proven effective at all. Yet she looks for- though 90 percent of them are associ- ward to the future. Karen Stabiner, author ated with universities.⁶ When discoveries of To Dance with the Devil: The New War about the human genome are not shared on Breast Cancer, observes: "Change, [Love] in the scientific community, the probabil- would argue, will come only if we start look- ity of detecting flaws or achieving new in- ing at breast cancer in a totally different sights decreases considerably. For example, way. Imagine breast cancer cells as rehabil- a biotech company has patented the ge- itatable criminals, she would suggest; we netic sequence for toxic shock syndrome need to change the environment in order although the firm has not developed an to change them."67 appropriate drug for this dangerous dis- Contrary to the increasingly common ease. The director of the National Center recommendations of the pharmaceutical for Genome Research believes that only industry⁶⁸ and the American College of Ob- newly-designed drugs should be patented, stetrics and Gynecology,69 Love argues that for he fears that biotech companies-from long-term-more than ten years-use of re- which the infusion of funds for genetic re- placement hormones for postmenopausal search flows-employ business rather than women significantly adds to their risk of science ethics. developing breast cancer. In fact, Love crit- icizes both the pharmaceutical industry and the medical profession for redefin- "Slash, Burn, and Poison" ing menopause as an illness, "just as the baby boomers hit middle age," thus cre- Yet genetically-based therapies, as for ex- ating a disability out of a natural condi- ample in the treatment of breast cancer, tion: "A woman's ovaries don't shut down are indeed promising. This new approach at menopause. They continue to produce one day may allow for "manipulations far low levels of hormones well into a woman's 166 CHAPTER NINE eighties. Synthetic hormones don't replace Transforming Scientific Orthodoxy: something that is missing when women AIDS Activism reach menopause. They add something that is not naturally there," Love asserts.⁷⁰ Steven Epstein in Impure Science⁷⁵ recounts Supporting Love, Dr. Christiane North- how AIDS activists, transforming them- rup-cofounder of the Women to Women selves into self-educated analysts of drug Clinic in Yarmouth, Maine, and a lead- regulations, "have mastered the science of ing women's health advocate-asks, "Why their disease in a manner that changed would the female body be designed to go the history of medicine." They denounced into planned obsolescence at age forty- what they saw as the unnecessarily sluggish two?""¹ Like Love, Northrup publicizes her pace of the drug approval process and self- concern that women may be risking over- indulgently elegant guidelines of scientific doses of estrogen because of misinformed bodies, such as the Food and Drug Adminis- doctors and greedy pharmaceutical compa- tration (FDA) and the National Institutes of nies. Northrup states that "there are mech- Health (NIH).⁷ Reaffirming the 1970s femi- anisms in the body to take over what might nist health movement's skepticism of tradi- be changing during menopause." Finding tional medical protocols, Gay Men's Health fault with what Northrup refers to as "the Crisis-in concert with other AIDS groups, same one-size-fits-all" hormone therapy for especially Act-Up (AIDS Coalition To Un- all women, both Northrup and Love claim leash Power)-pressured the FDA into relax- that women can control their health as they ing standards used to determine a drug's mature by eating properly, staying fit, and efficacy.78 Rather than precipitating confu- maintaining emotional vitality rather than sion, this increased freedom produced new by accepting the standardized regimen of drugs, created and tested with the guidance hormone replacement.72 of AIDS activists. Like Love and Northrup, the National Time magazine "Man of the Year" for 1996, Breast Cancer Coalition-mainly women Dr. David Ho, played a major role in the with breast cancer and members of their paradigm shift in scientists' picture of AIDS families-works to bring visibility to breast development. When scientists believed that cancer and funding to research of the dis- the AIDS virus lay dormant during the ease.73 Founded in 1991 by Fran Visco, the early and middle years of infection, doctors organization has demonstrated on the steps delayed treatment until the virus appeared of the Capitol and lobbied members of to emerge from its hibernation; however, Congress. Visco observes that "before we the experiments of Dr. Ho and University of began, the federal government spent less Alabama AIDS researcher Dr. George Shaw than $90 million on breast cancer research. presents a different model of AIDS: This year [1997] we're spending $530 mil- lion on breast cancer research." Having The results showed that in every day of every learned from the AIDS activists who began year, in every infected person, HIV produced in the early 1980s to procure funds where not thousands, not millions, but billions there seemed to be none, breast cancer ac- of copies of itself. And every day the body launched billions of immune cells to counter tivists are promoting research and pressur- the threat. The wonder was not that the ing the medical community for new kinds immune system eventually crashed. Given of treatments.⁷⁴ such intense fighting and heavy casualties, the wonder was that it lasted so long.79 DISABILITY AND TECHNOLOGY 167 Consequently, instead of waiting until the Referring to Salk's struggle to develop reemergence of the illness, oncologists be- a polio vaccine in the early 1950s, Weniger gan using combinations of the newly-form- and Essex note that "history teaches" that ulated drugs from the very start of the in- an organization different from the NIH fection, thus changing AIDS from a fatal "should run an expedited vaccine program disease into a chronic one similar to diabetes in the face of a public health emergency." Al- or hypertension. though by 1949 John Enders and colleagues Noting the increasingly remarkable pace received a Nobel Prize for growing polio of AIDS research, Dr. Jerome Groopman, virus in test tubes, Salk "applied this discov- Harvard Medical School professor, is con- ery in developing a vaccine." Weniger and cerned about those people infected with the Essex extend the analogy between the Salk AIDS virus who may not have access to the vaccine and a potential AIDs vaccine: expensive drugs required for their survival.⁸⁰ Besides battling their disease, many of those But Enders, along with Albert Sabin and who are insured are forced to cope with other eminent polio researchers, fought to bottom-line oriented HMOs reluctant to stop trials of the Salk vaccine. Calling pay for so-called experimental new thera- Salk's vaccine "quackery" and "kitchen pies. Certainly, many of the AIDS patients chemistry," they favored waiting for an ideal included among the forty million unin- vaccine. The independent March of Dimes, sured Americans are unlikely to be able to whose principal mission was to stop polio, afford the approximately fifteen thousand courageously put the Salk vaccine to the test anyway. dollars a year for medication necessary to On April 12, 1955, the headlines announced sustain their lives. "Though Dr. Groopman to an expectant world, "It Works!" The Sabin says that 'time is of the essence' in treating oral polio vaccine came into use around 1962. the HIV-positive now, he is frustrated by a But the availability of the Salk vaccine seven deficient health care system that can't move years earlier saved tens of thousands of lives. remotely 'as quickly as science is moving." Ultimately, most scientists are convinced In 1997, scientists discovered that even that only a vaccine will put an end to the when the AIDS virus could not be detected worldwide AIDS epidemic.⁸ Echoing the in the blood, it was still hiding in certain AIDS activists' successful assault on the cells producing a reservoir of HIV. At the FDA focus on pure, rather than practical, 1998 Twelfth World AIDS Conference in science, Bruce G. Weniger, a member of the Geneva, Dr. Ho and other researchers in- Presidential Advisory Council on HIV and dicated that "they had gone back to the AIDS, and Max Essex, professor of virology drawing board to map new strategies to at Harvard and chairman of the Harvard eliminate the latent reservoir.' The day be- AIDS Institute, call for the NIH to move fore the conference Dr. Ho declared, "Every beyond the "scientific orthodoxy" that is nation must overcome denial and address impeding the promising development of an this [AIDS] pandemic for what it really is- AIDS vaccine. 82 Weniger and Essex criticize an international emergency in which sixteen "the NIH culture" for minimizing the value thousand people are sentenced each day to of applied research, the empirical rather a slow and miserable death."85 than theoretical science that could result Less euphoric than the 1996 Eleventh in a vaccine that would "work to prevent World AIDS Conference in Vancouver, the HIV infection, or to forestall AIDS, or just Geneva conference emphasized the disap- to reduce contagiousness." pointments and problems: the failure of I68 CHAPTER NINE a promising AIDS vaccine; the lack of ag- in the Days of AIDS.91 One woman partic- gressive, preventative, worldwide programs ipating in the conference-which featured promoting sex education, use of male and the works of well-known authors such as female condoms, and needle exchange; and Larry Kramer, Tony Kushner, and Edmund the patients for whom drug therapy was not White-commented on the social and po- successful. 86 Many of the benefits from the litical impact of AIDS activists like those protease inhibitors and drug combinations writers: "The most important thing any seemed to have been achieved by 1998 as writer can do is remember that he is part of the mortality rate appeared to be reaching history,' [she] said, adding that it was partly a plateau.⁸⁷ because of AIDS writing and advocacy that Even for the vast majority of those who a cure was now possible. 'You did it,' the potentially could be helped by the new woman told the panel of artists." drugs, thirty-four million people affected with AIDS, the cost per year of the medi- cation is far beyond their reach. Although Toward a New Vision: Three Queries pharmaceutical companies are working to produce drugs that are increasingly effective Basic questions concerning disability and and easy to take, Gabriel Rotello, author of technology need to be addressed. First, why Sexual Ecology: AIDS and the Destiny of Gay is it that modern technology cannot meet Men, insists, "Activists will have to fight to challenges consistent with the principles of make them cheaper."8 Moreover, because in universal design, to make universally ac- the United States AIDS cases shifted demo- cessible dentist chairs, mammogram ma- graphically by 1988 from the white gay com- chines,⁹² and medical facilities available to munity (about one-third of all AIDS cases) people with disabilities and older people? to racial and ethnic minority communities And instead of expecting people to adapt (more than one-half of all AIDS cases), some to equipment, why can equipment not be African-American community leaders sug- adapted to people, including office furni- gest it is time for this new AIDS population, ture that prevents computer users from de- like earlier AIDS activists, to "Act-Up."⁸⁹ veloping repetitive strain injuries or com- Unlike disability or gay rights activists, puters that conform to the needs of peo- who focused on civil rights, AIDS activists ple with various disabilities? Second, how were single-minded, fixed on issues con- can we assert the primacy of the individ- nected with survival, health, and cure. They uals served over the "business ethics" of separated themselves even from the gay and biotech and pharmaceutical companies or lesbian community, for AIDS activists felt "a deficient health care system"? Finally, that they did not have the luxury of con- what can be done to assure that technolog- centrating on long-term concerns such as ical innovation, rather than producing new discrimination or access. Their sense of ur- constraints, will expand the potential for gency was sparked by what appeared to be choice and for inclusion for all people, in- the sudden decimation of a whole popula- cluding those with disabilities and chronic tion, frequently young men at the prime of illnesses? their lives.⁹ Like no other disability group, To deal with these questions, a new con- AIDS activists have had the inspiration to sciousness is required that transcends so- elevate their calamity almost to an art form, lutions to discrete technological problems. as evidenced by the three-day Key West con- Barriers to access may recede, and a new ference in early January 1997 on Literature vision may emerge, if designers of envi- DISABILITY AND TECHNOLOGY 169 ronments and inventors of new technolo- tive perspectives-from the vantage point of gies bring all those involved into the cre- people with differences that stem from dis- ative process. This receptiveness may inspire abilities, or age, or the variety of possibilities an imaginative leap that fosters the capac- that shape the human condition. ity to experience the world from alterna- Chapter Ten Disabled Veterans Claim Their Rights THE ACTIVISM OF DISABLED veterans garded Harvard junior before he became from World War I to the Gulf War seeking paraplegic as a result of an injury sustained medical services, benefits, education, and during World War II, illustrates this per- jobs impacted the disability rights move- vasive discrimination.¹ Despite Klinefeld's ment. Because the general public accepted ability to walk with crutches, negotiate rehabilitation and inclusion into the main- stairs, and drive a car, Harvard was "con- stream for disabled veterans of the two vinced that a paraplegic simply couldn't world wars more readily than for civilians do the work," according to Dr. Howard with disabilities, disabled veterans were the Rusk, a pioneer in rehabilitation. Thanks first to make progress in social integration. to Rusk's pressure on his friend, Dr. Arlie A question became self-evident. If veterans Bock, the head of health services at Har- could be successful as students, employers vard, Klinefeld went on to earn his Ph.D. and employees, husbands and fathers, com- at Harvard. Although he eventually secured munity leaders and neighbors, why couldn't the college teaching job he sought, Kline- civilians? In addition, a few disabled veter- feld once again had to struggle, this time ans organizations, breaking with many of against the false assumption that his dis- their colleagues, recognized that their po- ability made him unemployable. Innumer- litical influence would be enhanced if they able experiences such as Klinefeld's con- joined with civilians with similar disabili- firmed the need for disabled veterans, like ties. All people-veterans and civilians-with their civilian counterparts, to contend with spinal cord injuries resulting from battle, unresponsive bureaucracies and defy atti- accident, or illness share the need for acces- tudinal barriers, often more resistant than sible transportation and a barrier-free envi- physical ones. ronment. Disabled veterans, though more readily included in the mainstream, also discovered that they were not immune from Legislation and Self-Advocacy the same kind of discrimination as civilians with disabilities. As a result of the assumption that society The story of Herb Klinefeld, a highly re- owes a debt of gratitude to its disabled vet- DISABLED VETERANS CLAIM THEIR RIGHTS 171 erans, they have been generally given prefer- established, combining many government ential treatment over civilians with disabili- activities for disabled veterans under one ties. For example, although members of the administrative unit. League of the Physically Handicapped were The Disabled American Veterans of the labeled unemployable in the mid-1930s, the World War (DAVWW) evolved out of two government had been attempting to assist groups: the Ohio Mechanics Institute for disabled veterans in their efforts to secure Disabled Soldiers, a self-help organization jobs since World War I. Yet immediately af- formed from a Cincinnati training school ter this war, however, the U.S. government for disabled veterans, and a group of dis- was overwhelmed, unprepared to deal with abled veterans from the University of Cin- hundreds of thousands of returning dis- cinnati.⁵ The DAVWW, organized as a abled veterans who were coping with con- national body on September 25, 1920, devel- ditions such as blindness, tuberculosis, and oped a network of local chapters through- amputation, as well as the effects of poi- out the country, as a consequence, ini- son gas on their respiratory systems.² Veter- tially, of the efforts of Robert Marx, the ans faced many obstacles: no single govern- DAVWW's first national commander. Act- ment agency was responsible for veterans' ing as an advocacy group for disabled vet- issues; bureaucratic paperwork was difficult erans, DAVWW joined the American Le- to negotiate; hospitals were overcrowded; gion and other veterans' groups in secur- available rehabilitation and training pro- ing legislation that resulted in the creation grams were inadequate; jobs were scarce; of the Veterans Bureau. Formally chartered and there was no protection from discrimi- by Congress in 1932, DAVWW membership nation against people with disabilities. increased dramatically in such times of cri- Two new concepts were initiated with the sis as the Great Depression, World War II War Risk Insurance Act, which became fed- (when the name was changed to Disabled eral law in 1914 and was amended in 1917.³ American Veterans [DAV]), and the Korean First, the amount of payment received by a War.⁶ After World War II, the DAV developed disabled veteran was determined by the de- a program to train national service officers gree of disability incurred as a result of mil- to lend support to other disabled veterans itary service; military rank was no longer a through counseling and assistance in filing consideration as it had been in the past. Sec- claims.⁷ ond, Congress funded vocational training In order to take full advantage of their and rehabilitation in order to help disabled political clout, veterans' groups frequently veterans become employable. The original sought to disassociate themselves from ci- legislation was replaced by two later acts, vilians with disabilities. Although FDR the 1917 Smith-Hughes Vocational Educa- tried to introduce "a unified rehabilitation tion Act and the 1918 Smith-Sears Veterans program for civilians and veterans," veter- Rehabilitation Act.⁴ However advantageous ans' groups successfully lobbied for "a spe- this legislation was in theory in providing cial program for those injured in military training, jobs, and follow-up services for dis- service. Ultimately, the law increasing ben- abled veterans until they became indepen- efits and services for disabled veterans was dent, disabled veterans encountered frustra- enacted in March 1943.⁹ A separate law, the tion when they sought the actual benefits Barden-LaFollette Act, expanding the 1920 and services, for they had to deal with over- Smith-Fess Vocational Rehabilitation Act, lapping laws and government agencies. In was passed in June 1943 for civilians with 1921, the United States Veterans Bureau was disabilities.¹⁰ 172 CHAPTER TEN Rehabilitation: The Man, New York, in early 1944 15 He described this Not the Wound facility as "a combination of a hospital, a country club, a school, a farm, a vocational Although vocational rehabilitation began training center, a resort, and a little bit in the 1920s, focusing only on employ- of home as well." Although dubious about ment of people with disabilities, Dr. Henry the psychiatric aspect of rehabilitation, phi- Kessler and, later, Dr. Howard Rusk ex- lanthropist Bernard Baruch would become panded the meaning of the term "rehabil- Rusk's most supportive benefactor. itation." Rehabilitation evolved out of the Yet Rusk also had to overcome the resis- need to find a means of dealing with dis- tance of his medical peers to his new con- abled soldiers neither ill enough to remain ception of rehabilitation. As he explained: in the hospital, nor well enough to return to battle. Kessler, an orthopedic surgeon who These weren't strangers to whom I was talking. These were my old friends and served in World War I, referred to as "the colleagues, fine men and excellent doctors, 'Pied Piper of rehabilitation' and 'one of but the kind of rehabilitation I wanted to the great pioneers in the field,' appreciated do had never been done. And they didn't see the requirement for rehabilitative medicine any need to start it. They seemed to think before World War II."¹¹ I was trying to push some kind of "social While he initiated surgical techniques in service boondoggle." It got back to me later that some of them even referred to the idea 1923 that allow muscular control of artifi- as Rusk's Folly.17 cial limbs,¹² by World War II he developed an innovative rehabilitation program for Rusk enlisted the services of Dr. George more than three thousand amputees. When G. Deaver, medical director of the Institute Kessler realized that insufficient attention for the Crippled and Disabled (ICD)¹⁸ in was being paid to permanently disabled ser- New York City, to train air force person- vicemen after their wounds had healed, he nel in his techniques for teaching para- wrote, "The Navy treated the wound, not plegics how to walk on braced legs. 19 At the man."13 Although Kessler's superiors this time, before a barrier-free restructuring did not understand his comprehensive ap- of the built environment was a consider- proach, he was successful in training limb- ation, and before lift-equipped buses and makers, encouraging patients to become in- modern wheelchairs were invented, walk- formed consumers, and making the medical ing was essential in order for paraplegics profession and recently disabled servicemen to participate in many life activities. Using aware of the concept of rehabilitation. this "total care" approach,2 Rusk made it Sensitive to the problems of the wounded possible for disabled veterans to achieve in- airmen he was treating, Rusk slowly and creasing degrees of independence as they painstakingly discovered from his patients gained the skills and self-assurance to par- that "the whole man" required more than ticipate in society. Some attended institu- occupational counseling.14 He needed emo- tions of higher learning, while others be- tional, social, and educational support, as came entrepreneurs or employees. Kessler's well as training for his family and his friends and Rusk's vision of rehabilitation of dis- to accept him in his new condition. In or- abled veterans fostered the movement for der to provide recuperating airmen with rehabilitation and deinstitutionalization of an atmosphere more congenial than a hos- civilians with disabilities, which ultimately pital environment, he established the first developed into the consumer-directed Inde- Air Force Rehabilitation Center at Pawling, pendent Living Movement. DISABLED VETERANS CLAIM THEIR RIGHTS 173 Paralyzed Veterans of America jobs; and to foster the development of PVA nationwide. 24 In addition, PVA urged legisla- More than other major veterans organiza- tors to enable the Veterans Administration tions, Paralyzed Veterans of America (PVA) (VA) to provide attendants for those veter- recognized the affinity between its mem- ans who were so disabled that they could bers' issues and those of civilian paraplegics not otherwise live in the community. and quadriplegics. Perhaps because these By World War II, advances in medical sci- veterans shared a particular disability, most ence such as "the advent of antibiotics and often requiring the use of a wheelchair, they newer and better medical and surgical tech- tended to acknowledge their link to civilians niques" made it possible for paraplegics and with similar disabilities. Articles in Paraple- quadriplegics to survive, for the first time, gia News, a monthly newspaper that began in significant numbers.² Prior to World War publication in July 1946, revealed these veter- II, such patients rarely lived beyond a year ans' discomfort with the disparity between because of bedsores and acute kidney and the treatment of disabled veterans and that bladder problems. Rusk noted that "of the of disabled civilians. References were made four hundred men who became paraplegic to "civilian paraplegics" who have not had in World War I, a third died in France, an- the advantages available to veterans, and other third died within six weeks thereafter, more specifically to "techniques of medi- and of the remaining third, 90 percent were cine, surgery, and rehabilitation" unattain- dead within a year."2 In contrast, three- able by "most non-veteran paraplegics."21 fourths of the twenty-five hundred surviv- Perhaps this receptive vision made possi- ing paraplegics of World War II were alive ble the unanimous resolution of Septem- twenty years later, and of those fourteen ber 1947 at the second PVA convention, hundred were still working. ten months before President Harry S. Tru- The concerted national effort to reha- man desegregated the armed services in July bilitate disabled veterans led to surprising 1948.2 This resolution protested the segre- breakthroughs for all people with disabil- gation policy of a southern hotel with a suc- ities. Quadriplegics, formerly approached cinct statement sent not only to the hotel with hopelessness and futility by the medi- but also to the press: "A spinal cord knows cal profession, were not only surviving but no bias." As a result, African Americans were working, attending college, driving cars, ini- served, without distinction as to race, for the tiating and managing businesses, and liv- first time in a Richmond, Virginia, hotel. ing independently in accessible homes. Al- Beginning with the Van Nuys Califor- though the term "wheelchair accessibility" nia Veterans Hospital in early 1945, para- was not commonly used until more than plegics and quadriplegics in similar hos- a decade later, references to the need that pitals throughout the country formed in- mobility-impaired veterans had for "houses dividual groups that eventually merged in fitted with special equipment"29 or "remod- 1947 into a national organization, Paralyzed eling conventional dwellings to wheelchair Veterans of America.² The disabled veter- living"30 appeared in Paraplegia News in the ans in the hospitals created such groups in late 1940s. Disabled veterans contended that order to advocate for continuing medical re- "for every dollar spent on their rehabili- search and rehabilitation programs, as well tation, the federal government is securing as for vocational and driver training pro- a return of ten dollars by way of income grams; to publicize disabled veterans' needs tax, to say nothing of the immense gain for appropriate housing, automobiles, and in the men's morale and productive capac- 174 CHAPTER TEN ity."³¹ Allan R. Cullimore, president emeri- hand controls generally worked on the same tus of Newark College of Engineering (now principle.³⁶ New Jersey Institute of Technology), made The April I949 Paraplegia News described a clear case for employing people with dis- a "driving device for the quadriplegic pa- abilities: tient," an apparatus appropriate for people with limited but not total paralysis of their The fact-the real fact, the realistic and upper extremities. (The use of the term "pa- practical side of the employment problem- is that everybody is handicapped. The tient" in a publication encouraging inde- normal person is a pure figment of the pendence for veterans was a vestige of the imagination Different kinds of people "medical model" at a time when all people must do different kinds of things, for in with disabilities were considered sick or hos- any particular job all people do not fit. We pitalized whether or not they were in a med- try to put the right persons in the right ical facility.) The appliance included a heavy jobs picking them not for what they lack, band that held the driver in a secure upright but what they have, what they need, to do the job.³ position and an apparatus that attached the right arm and hand to the steering wheel while the left hand was strapped to the accelerator and brake. Thus, quadriplegic Automobiles: Opening "New Vistas" drivers able to use the mechanism could steer with the arm and hand as well as start, With the enactment of Public Law 663 in increase speed, and stop with the left up- 1946, members of the armed forces who had per hand. become amputees or paraplegics in World Information about many of the devices War II were granted free automobiles. Ac- developed for the veterans of World War II cording to Paraplegia News, "When a man reached the civilian disability population. who has been limited to wheelchair exis- For example, a Canadian woman wrote a tence can own and operate a car, new vistas letter to Paraplegia News requesting a copy are open to him. The incentive provided of the article that described the equipment carries over to all phases of his life."3 The designed for quadriplegic drivers: inaccessibility of public transportation also provided a compelling argument for grant- I was born with a quadruple handicap- ing automobiles to veterans with mobility legs off just below the knees and arms just impairments. below the elbows. I have grown up on two pair of artificial limbs, which I am able to manage Beginning in the late 1940s, along with quite well, and get around without aid of a the advent of automatic transmissions on cane, or anything. I am an artist by profession a large scale,35 hand controls-a technologi- and able to do, with my two arms together, cally simple device-became available. Many almost everything the average normal person of these mechanisms included an arm at- can do-but have not driven a car. I would tached to the steering column with a brake love to drive a car and just in the last month and dimmer switch built into the device. I have been giving it serious thought and trying to learn what controls are available Accelerating was achieved by squeezing the that would help me most. Your quadriplegic hand lever while braking was accomplished controls sound like just the thing!37 by pushing the lever away from the body toward the floor. Costing between thirty Wheelchair users who could not transfer and sixty-five dollars, the various models of from their wheelchairs to the car seat were DISABLED VETERANS CLAIM THEIR RIGHTS 175 unable to drive until the invention of de- ity probably because, unlike the motorized vices enabling them-in their wheelchairs- wheelchairs of the late 1960s and the motor- to maneuver in and out of automobiles. ized scooters of the late 1970S, this converted Advertisements appeared in Paraplegia News golf chassis was appropriate neither for in- from 1959 to 1964 for such transfer appara- door use nor for loading into an automobile tuses as a custom-made hydraulic lift for el- or a van. evating a wheelchair user seated in his or her An advocate for disabled veterans, Henry chair, a portable ramp, and a device known Viscardi-who at twenty-seven learned to as the Hoyer Kartop-Lift.38 Mounted on walk with artificial legs-instructed am- top of the car, the Hoyer Kartop-Lift trans- putee veterans not only in the art of walking ferred the wheelchair user from the chair with prosthetic limbs but also in driving.40 to the driver's seat, utilizing hydraulic lift- Focusing on the high unemployment rate ing action. Although Hoyer lifts continue of disabled veterans after World War II, Vis- to be useful for transferring quadriplegic cardi joined other prominent business lead- wheelchair users to and from beds, bath- ers in 1949 to form Just One Break (JOB), an tubs, and toilets, the concept of hoisting organization in New York City that found an individual out of a wheelchair into a car jobs for thousands of disabled veterans, and never became widely accepted by mobility- later even for civilians with disabilities. The impaired drivers. ability to drive was a significant factor in Yet hydraulic lifts did become popular allowing many of these disabled veterans, es- as a means of raising wheelchair users, pecially those who were mobility impaired, seated in their wheelchairs, into vehicles. to work. Most wheelchair users who could not trans- Once paraplegic, triplegic, and quadriple- fer independently from their wheelchairs to gic veterans owned automobiles and oper- their car seats preferred to remain in their ated them, some using hand controls, many wheelchairs while driving. This preference civilians with disabilities recognized that was not surprising considering that, unlike they too were capable of becoming drivers. the driver's seat, these wheelchairs were de- Although special parking privileges had signed to provide the specific support many been extended to disabled veterans shortly of these mobility-impaired drivers required. after World War II, the definition of disabil- Although more often employed to provide ity and the specific privileges varied from wheelchair users access to buildings than state to state. Requiring such privileges as automobiles or vans, portable ramps did much as the disabled veterans, civilians with become a commonly-used device, beginning motor impairments organized on a local in the 1980s, for allowing wheelchair users level to obtain special parking permits. Even to enter accessible taxis. after securing permits for drivers with dis- An advertisement for a fully hand-con- abilities, these organizations were engaged trolled motorized vehicle, custom-built on in ongoing struggles to maintain such hard- a golf cart chassis, appeared in Paraplegia sought privileges.⁴¹ Originally focused on News in the early 1960s.³ The description of parking privileges for all those with motor the self-loading, power-elevating platform impairments, civilians as well as veterans suggested that the wheelchair user enter the with disabilities began dealing with broader cart in his chair and drive the ambulation concerns, such as removing architectural device on streets and sidewalks. This model barriers, coping with employment discrim- of a motorized vehicle did not gain popular- ination, achieving political influence, and 176 CHAPTER TEN enabling people with serious disabilities to congressional hearings revealed that mili- participate in the wider society. tary personnel were exposed to dangerous levels of chemical and biological agents. The veterans coping with Gulf War syn- The Pattern of Denial drome faced a bureaucracy tempered by the struggle of the Vietnam veterans. Yet, simi- While earlier veterans' organizations helped lar to Vietnam veterans with Agent Orange to ignite the disability rights movement, syndrome or post-traumatic stress disor- later veterans-reflecting the rights move- der, veterans with Gulf War syndrome had ments of the 1960s and 1970S, including to deal with serious doubts about their the growing assertiveness of people condition that frequently-unlike paralysis with disabilities - countered unresponsive or amputation-was not immediately dis- bureaucracies and government cover-ups. If cernible nor apparently relevant to the civil- civilians with disabilities were gaining ser- ian population. As Gulf War veteran and vices and independence, what did a nation American Legion lobbyist Steve Robertson owe those who had acquired their disabili- asserted, "The one thing that stands out in ties by serving their country? Many Vietnam my mind is that I don't want to be in the veterans-inspired by civil rights activism- same position as the Vietnam veterans that learned to oppose an existing veterans bu- had to fight and fight and fight and fight to reaucracy that denied the validity of their get the medical attention that they needed illnesses,42 especially conditions resulting and they deserved."46 from exposure to Agent Orange and from Despite the Pentagon's portrayal of the post-traumatic stress disorder.⁴³ 1991 Gulf War as surgical, clean, and high These concerns were considered "totally tech, in reality this military operation had alien to the members of the traditional unhealthy consequences for service person- lobby,"44 organizations such as Veterans of nel and perhaps even their families. Robert- Foreign Wars, the American Legion, and son was healthy when he was deployed to the Marine Corps League. Of course, all the Middle East, but he has been ill since issues of Vietnam veterans were complicated his return to the United States: "I had a by these traditional organizations confus- chronic cough, diarrhea, aching joints, fa- ing their own anger about the failure of tigue. I would sweat profusely, even when I military policy-and their disappointment was in an area where I should be cool. in some Vietnam veterans who were skep- I just don't feel like I have the physical tical about the war-with the loyalty and strength to do the things I was doing be- courage of those who served in Southeast fore." General Ronald R. Blanck, comman- Asia. Even by the late 1970s and early 1980s, der of Walter Reade Army Medical Center, Vietnam veterans with war-related disabili- reported seeing veterans of this conflict with ties were still struggling to attain "visibility the series of inexplicable ailments of Gulf and subsequently a legitimate voice in vet- War syndrome: tiredness, weight loss, joint erans' affairs." and muscle aches and pains, hair loss, and Although awareness of the illnesses re- sore gums. sulting from the use of Agent Orange dated Two years after the conflict, Tod Ensign- back to 1969, references to this ailment did an attorney specializing in military law and not appear in newspapers until roughly ten director of Citizen Soldier,47 a nonprofit years later. Less than five years after the 1991 organization devoted to defending and ex- Gulf War, however, newspaper accounts of panding the full civil, constitutional, and DISABLED VETERANS CLAIM THEIR RIGHTS 177 disability rights of active military personnel "Their cases are much more complex than and veterans-discussed the synergistic ef- other vets because they involve so many fect that may have caused these health prob- more toxins than have ever been dumped lems. Among these causes Ensign cited mas- on people: experimental shots and pills, sive oilfield fires that burned for months, massive amounts of oil-well fire pollution, pollutant fumes from kerosene lamps and radioactive depleted uranium, and low lev- heaters that were used in tenting areas, and els of multiple types of chemical warfare depleted uranium shells that are radioactive agents," notes Paul Sullivan, currently ex- at low levels. ecutive director of the National Gulf War Those on active duty would be hesitant to Resource Center.⁵² "Included in this toxic reveal their symptoms, Ensign noted in 1993, soup are pesticides and insecticides," Sul- "because today, with the pressure to get rid livan adds, "so we're dealing with overlap- of people, a person might well be putting ping illnesses resulting from the combina- his career on the line." Robertson concurred tion effects of overlapping toxins. Sul- with Ensign's assessment: "Every active duty livan describes the long-term, potentially person that I've talked to, and this is an ab- lethal consequences of these kinds of toxins: solute statement-everyone that I've talked in the course of battle, Gulf War military to-says, 'I know other guys that are sick, but personnel often were exposed to "a very they don't want to come forward." Cure, fine respirable, depleted uranium oxide dust not compensation, Robertson emphasized, that settles in the lungs and the bones and is the real goal of the very sick and disabled is known for causing cancer, birth defects, veterans of this conflict. as well as brain and kidney damage." Two government studies contrast the Veterans' groups have indicated that the chronic health problems of military person- Pentagon's denials regarding Gulf War ex- nel deployed in the Persian Gulf region be- posure adversely affected the treatment re- tween 1990 to 1991, with troops that did not ceived by returning Desert Storm troops at serve in the Gulf War.48 The results reveal hospitals run by the Department of Veter- that Gulf War troops reported more than ans Affairs: "Because doctors were told that three times, and as much as five times, the chemicals had not been used, many veterans rate of illnesses such as fatigue, memory were sent straight to the psychiatric depart- loss, joint stiffness and/or pain, rashes, di- ment," reported Sullivan in 1997 when he arrhea, and depression, as troops who were was spokesperson for Gulf War Veterans of not deployed in the Gulf. In 1997, eighty Georgia.54 Veteran Steve Robertson points thousand Gulf War veterans "sought special out that the Departments of Defense and medical checkups from the government."⁴ Veterans Affairs "in just about every case" By 1999, more than one hundred thousand claimed that the constellation of symptoms Gulf War veterans filed claims for benefits known as Gulf War syndrome is stress- with the VA for service-related illness. Con- related: "The psychiatrist at Walter Reade tradicting earlier studies by a presidential Hospital told me that I had a lot of pent-up commission and the Institute of Medicine, angers, frustrations, and hostilities, about a scientific survey endorsed by the Pentagon being deployed and spending time in the determined in late 1999 that an experimen- Persian Gulf."55 tal drug distributed to roughly 40 percent of Although by 1999 the Department of Vet- the nearly seven hundred thousand Ameri- erans Affairs refused to grant 60 percent can troops who served in the Persian Gulf of the disability claims of Gulf War veter- may be a cause of Gulf War syndrome.⁵¹ ans,⁵⁶ Sullivan cited the 95 percent denial 178 CHAPTER TEN rate in 1997: "The doctors believed that the of Veterans Affairs had received disability soldiers must be faking it."⁵⁷ Insisting that claims from 39,419 soldiers who had been he had returned home from the Vietnam exposed to Agent Orange during their ser- War in perfect health, although that conflict vice in Vietnam. was much more stressful and frightening Chief of the Division of Epidemiology at than the Gulf War, Marine gunnery sergeant the American Health Foundation in New Wayne Godfrey-who developed severe joint York City, Dr. Steven Stellman, emphasizes aches and a chronic bleeding skin rash after the greater potential toxic exposure of Viet- his service in Desert Storm-was appalled nam veterans as compared to Gulf War vet- by the notion of some scientists that stress erans: "Approximately seven hundred thou- was the main cause of the health problems sand soldiers participated in the Gulf War of veterans of the more recent war.58 while 2.3 to 3 million troops served in Viet- Post-traumatic stress disorder was a sig- nam. In the Gulf War, exposures occurred nificant psychological ailment for perhaps over a period of forty days while a typi- as many as 450,000 Americans who served cal tour of duty for a Vietnam combatant in Vietnam, I5 percent of the three million was thirteen months, and some even had U.S. troops deployed in that war zone.59 two tours. Also, the Vietnam War lasted In addition, since American military planes from 1964 to 1975.' "62 Yet Stellman points sprayed over twelve million gallons of Agent out that there is a significant similarity be- Orange over jungles and crops in Vietnam tween the two wars. "As with Gulf War vet- between 1962 and 1971, veterans of this con- erans, the early complaints of Vietnam vet- flict also have been concerned about their erans, individually, appeared vague. These exposure to that herbicide. The health of symptoms didn't tell much: fainting, mem- twelve hundred veterans who took part in ory loss, difficulty sleeping, fatigue, skin an operation known as "Ranch Hand" was conditions, and aches and pains. But as a especially scrutinized because they had "the grouping of symptoms, a pattern emerged. most extensive exposures to herbicides of In the Vietnam War, the spectrum of symp- any group of Americans who served in toms was related to combat and Agent Or- Southeast Asia."⁶ Because a chemical in ange." This correlation may be attributed Agent Orange, dioxin, is known to cause to the fact that combatants were far more cancer and birth defects in laboratory an- likely than noncombatants to be exposed imals, many members of the armed forces to Agent Orange. who were stationed in Vietnam blamed this The Institute of Medicine of the Con- toxin for the diverse physical problems af- gressionally-chartered National Academy of fecting them and their families. Sciences produced a comprehensive report Ensign observes that "the general con- in 1993, updated in 1996 and again in 1998, sensus of scientists who were independent on the health effects of Agent Orange. Stell- was that anyone who was in a forward zone, man indicates that the study found evi- where spraying was done in the south, was at dence of association between exposure to risk."61 Twenty to thirty years after these sol- Agent Orange and various types of can- diers' exposure, Congress mandated in 1991 cers, such as Hodgkin's disease, lymphoma, that limited compensation be awarded for and lung and prostate cancers. "The gov- ailments caused by Agent Orange. By April ernment clearly participated in a major 1993, only 486 veterans had been granted coverup of the Agent Orange issue," Stell- compensation although the Department man notes.⁶³ DISABLED VETERANS CLAIM THEIR RIGHTS 179 Atomic and Chemical Guinea Pigs tedly this would have a little of the Buchen- wald touch." Unlike troops in the Gulf War and the Viet- Although by the end of the 1970s atomic nam War whose health was compromised in veterans obviously were experiencing dis- battle-related activities, the approximately proportionately high rates of cancer and 180,000 soldiers exposed to radioactive fall- leukemia, not until 1990 did Congress fi- out between 1946 and 1962 were engaged in nally order the Department of Veterans Af- the more than two hundred U.S. govern- fairs to provide limited compensation. San- ment atmospheric tests of nuclear bombs. dra Marlow, the daughter of an air force Tod Ensign refers to this exposure of mil- colonel who observed nuclear weapons tests itary personnel as deliberate, "in the sense from the front trenches of Camp Desert that they were put in the area where fallout Rock, Nevada, in 1955,⁶⁷ describes why she was likely. A few of them were actually became an atomic veterans activist: put right into the bomb shelters right at the site, right near, within a mile or two of My father died [from leukemia] in December ground zero." of 1977. Three years later I became academic and scientific chairperson of the National One of these was Anthony Guarisco, a Association of Atomic Veterans [NAAV]. I am sailor stationed in 1946 on Bikini Atoll, no longer alone in seeking the truth about where he saw "the first postwar atomic the effects of nuclear radiation. NAAV now test"-the explosion of two atomic bombs has over seventy-five hundred members and is near ninety unoccupied warships.6 When growing every day. The members are veterans Guarisco and other sailors were ordered "to and their wives, widows and children. They check radiation levels and attempt decon- include those who worked on Trinity, the first atomic test, as well as the servicemen tamination by scrubbing the decks," they who cleaned up the contaminated rubble did not realize that they were really involved of Hiroshima and Nagasaki. Many have in an experiment to determine how much developed cancers and other debilitating radiation a man can endure. Diagnosed illnesses; all share deep personal anxieties with "a degenerative disease of the spine" about the medical effects of exposure to twenty years after the bomb test, Guarisco radiation The atomic veterans were experiences intermittent pain and difficulty neither informed of the dangers nor were they volunteers.⁶ walking. Like Guarisco, two to three thousand ser- In 1997, the Disabled American Veter- vicemen "unknowingly participated in clas- ans attempted to locate veterans who took sified medical experiments-including tests part in Operation Castle, a series of nuclear of flash-blindedness and the psychologi- weapons tests in the northwestern Marshall cal effects of radiation-between 1946 and Islands in the central Pacific conducted 1963."⁶⁶ Guarisco referred to a letter that he from March I through May 14, 1954. David found in 1982, written by a deceased army W. Gorman, DAV Washington Headquar- scientist who encouraged "the use of hu- ters executive director, said: man subjects in radiation research" while acknowledging a potential public relations Of particular interest is information on the problem: "Evoking Nazi experiments, the levels of radiation exposure among Operation Castle participants so the DAV can assist those scientist warned [that] "Those concerned in veterans in obtaining adequate medical care the Atomic Energy Commission would be and compensation for service-connected subject to considerable criticism, as admit- disabilities related to exposure to ionizing 180 CHAPTER TEN radiation. The DAV is concerned that many veterans-on the staff of the senator most of these atomic veterans were exposed to involved with these issues-has been unable dangerously high levels of radiation that to get reliable recent statistics. Gensler says, could have serious health consequences, even "VA statistics are meaningless. It's hard to decades after their initial exposure. separate the ineptness from the secrecy at Dr. Martin Gensler, aide to Senator Paul the VA." Gensler was told that atomic vets Wellstone (D-Minn.), observes, "If an atom- were getting 99 percent compensation for ic veteran who was at ground zero and never their claims, but he discovered that these smoked in his life gets lung cancer, he has numbers had nothing to do with radiogenic no real chance of getting compensation. problems. Rather, the statistics dealt with Yet even if a Vietnam veteran spent all his other physical problems such as disfigure- time in a café in Danang-nowhere near ment or flat feet. dioxin-and smoked two packs of cigarettes Similar to the atomic veterans, sixty thou- a day, if he gets lung cancer," he will be sand American soldiers and sailors during compensated.70 Since the Veterans Health World War II were used as human guinea Care Eligibility Reform Act went into effect pigs in secret tests involving chemical war- on October 9, 1996, certain diseases are pre- fare.⁷¹ Unaware of the danger and misled by sumptively service-related, according to the their superiors, these participants thought VA, if military personnel were in the South- they were serving their country by, for ex- east Asia theater between specific years in ample, contributing to shortening the war which Agent Orange was used in Vietnam. or, more mundanely, testing summer uni- For atomic vets, on the other hand, the ex- forms. Instead, they were testing gases as posure is always determined to have been lethal as sulfur mustard, nitrogen mustard, under five rads-which excludes them from or lewisite, a gas containing arsenic. compensation-even though there is no way Dr. Constance Pechura, director of a to reconstruct the dose since the records are study by the National Academy of Sciences so poor. Institute of Medicine on the U.S. mili- Though no scientist at the April 21, 1998, tary's chemical warfare experiments, indi- Senate Veterans Affairs Committee, chaired cates that the level of exposure of the par- by Senator Tim Hutchinson (R-Ark.), would ticipants in these tests sometimes was as defend this determination regarding the high as that experienced on the battlefield exposure of atomic vets, they continued to in World War I: "Despite the fact that it was be denied compensation. Gensler explains well known by 1933 that there were serious why they are not receiving the benefits to long-term health effects from this kind of which they are entitled: "They are doing exposure, including emphysema, nothing so badly because they have no clout. Many was done to monitor or to follow up on are dead, so the only ones left are their these men's health. And, in fact, in some widows and children." Though Gensler calls cases, symptoms that they had were delib- the situation tragic, he adds that Senator erately recorded as something else." These Wellstone is trying to correct this injustice. World War II participants took their oath By April 1993, only 1,166 of these atomic of silence so seriously that, almost without veterans had been granted compensation exception, they said nothing about these of the 13,334 atomic veterans who had filed mustard gas tests for nearly fifty years. Not disability claims with the VA. Gensler, the only did they keep the secret from their congressional aide probably most knowl- wives and families, but they also jeopardized edgeable about the concerns of atomic their medical treatment and their compen- DISABLED VETERANS CLAIM THEIR RIGHTS 181 sation by concealing their experiences from nonexistent-emerged when a Georgia vet- their doctors and the VA. erans' group sought them under the same In March 1993, when the Pentagon an- act.⁷² Conceding that there were gaps in nounced that it was declassifying test infor- these otherwise meticulous logs, the Pen- mation and releasing the participants from tagon in 1996 announced its intention to in- their VOWS of secrecy, these World War II sol- vestigate after veterans' groups pointed out diers began speaking out. Still, their efforts that several pages were missing for key dates. to secure compensation-like their inability Despite the denial of Pentagon spokesper- to redeem their suffering-were frustrating son Brian Whitman, veterans' groups were and demoralizing, as exemplified by Rus- suspicious that the government was con- sell O'Berry, a veteran who attributes his cealing information about the detection of repeated hospitalizations for chronic lung chemical or biological weapons during the disease, emphysema, and asthma to his par- Gulf War. ticipation in mustard gas tests: They were especially concerned about the When I filed for VA benefits, they told me period in 1991 when combat engineers blew that they didn't have anything on record. up the Kamisiyah ammunition depot, pos- Then they said my records were burned up sibly exposing nearly a hundred thousand in St. Louis in a fire. So, I had to write to U.S. military personnel to nerve gas as a the Freedom of Information Act to get my result of explosions on March 4, March records. And I do have those records now IO, and perhaps March I2.73 The testimony confirming the dates that I did go in the gas of Gulf War veterans before congressional chambers, how long I stayed, so forth The monthly checks that I receive will never, committees indicated that Kamisiyah was never compensate me for what I've been only one of many such events. In fact, while through physically and mentally because it the Presidential Advisory Committee on has certainly ruined my life. And I know of Gulf War Veterans' Illnesses had counted others that it's ruined, and there's a lot of fifteen similar occurrences, Pat Eddington, others that have passed on, that's not here whistle-blower on the Central Intelligence today to talk about this, and I'm speaking for Agency (CIA) and former CIA research an- them, too. alyst, claimed that there were "fifty or sixty By April 1993, of the 295 veterans of mus- solid incidents."⁷ Although the Pentagon tard gas tests filing claims with the VA, only initially estimated that only four hundred fifty-nine had been granted compensation. soldiers were exposed, the figure later grew As for atomic veterans, current valid statis- to five thousand and even later to twenty tics for mustard gas veterans are becoming thousand.75 James J. Tuite, a former senate increasingly difficult to secure as the politi- staffer who led a congressional investiga- cal impact of this aging and dying popula- tion into Gulf War illnesses, said in 1997 tion continues to diminish. that "when the assessments are done and the analyses are finished, we're going to find out there was theater-wide exposure." Holding a Nation Accountable In the same year, DAV executive direc- tor Gorman urged the government to ex- Just as O'Berry's allegedly burnt records tend indefinitely the two-year time period were resurrected when the mustard gas that Persian Gulf War veterans with undi- test participant employed the Freedom of agnosed illnesses are allowed to prove that Information Act, Gulf War combat logs- their disabilities emerged from their ser- that the Defense Department claimed were vice in Southwest Asia.⁷⁶ Because the on- 182 CHAPTER TEN set of these illnesses may take longer than Although they may have American sub- two years, Gorman asserted that the regu- sidiaries, half of the companies that make lation should be changed "until it can be up the sixty-nine defendants are not Ameri- determined what is making these men and can.⁸⁰ Among them are three German com- women sick." He added: panies: Degesch, manufacturer of cyclone The need for the Department of Veterans B used in death camps in World War II; Affairs to reconsider that eligibility period has Preussag, producer of poison gas used in been heightened by recent acknowledgments World War I; and Thyssen, whose founder, by the Department of Defense that many Fritz Thyssen, was one of the big financial thousands of our troops in the Persian Gulf backers of Adolph Hitler in the 1930s. were likely exposed to depleted uranium, Originally filed in state district court of diseases endemic to Southwest Asia, and Brazoria County, Texas (Twenty-third Cir- pesticides. In addition, U.S. troops were given vaccinations, inoculations, and anti-nerve cuit) in 1994 and still pending in 1999, the agent pills without apparent regard for their Coleman case represents the efforts of be- side effects It is clear to the DAV that issues tween four and five thousand Gulf War involving health care and compensation will veterans to circumvent legal prohibitions never be resolved without the full disclosure against government and military liability, and cooperation by all government agencies uncover the causes of their ailments, gain concerned. compensation for their medical problems, Fearing a Pentagon whitewash, advocates and prevent companies from profiting from for Gulf War veterans, such as Pat Edding- chemical and biological weapons of mass ton and Matt Puglisi, director of Gulf War destruction. Frank Spagnoletti, a lawyer for Syndrome Research for the American Le- the plaintiffs, describes the suit: "This is gion, in 1996 had called for comprehensive like a military operation we're engaged in. public hearings employing a special prose- They'll stop at nothing to remain in the cutor and an oversight body independent of dark."81 Among the investigators Spagno- the Defense Department.77 letti has gathered to track down evidence "As a result of a 1950 lawsuit, U.S. v. regarding the shipment of weapons to Iraq Feres, the military cannot be held account- is Admiral Elmo Zumwalt II, former chair- able legally for anything it does to peo- man of the Joint Chiefs of Staff, the officer ple while they are on active service. This responsible for ordering the use of Agent military immunity set a deadly precedent," Orange in Vietnam. One of the admiral's Ensign asserts. 78 Although the U.S. gov- sons is assisting in the investigation; the ernment and the military are legally im- other died as a result of Agent Orange- mune from financial obligation, theoret- related cancer after the Vietnam War.⁸² ically corporations can be held account- Gary Pitts, another attorney for one of the able.79 Not only have Gulf War veterans four law firms representing the plaintiffs, of New England and of Georgia used the refers to the suit as a David and Goliath Freedom of Information Act to acquire affair since the defendants are represented records, but also veterans brought a billion- by twenty-five or thirty law firms. Yet Pitts is dollar lawsuit (Marshall Coleman et al. v. optimistic about his chances of winning be- ABB Lumus Crest et al.) in November 1994 cause of the strength of his case. Although against companies-including Bechtel, M. he believes that the lawsuit may take up to W. Kellogg, Dresser Industries, and In- three years to come to trial because of unre- terchem, Inc.-that exported what the plain- solved jurisdictional arguments, this case, tiffs considered deadly technologies to Iraq. he insists, is not just about the roughly DISABLED VETERANS CLAIM THEIR RIGHTS 183 one hundred thousand Gulf War veterans the government did not keep track of who affected by dangerous exposures. "If these was exposed to potential toxins, when, how companies that made money off Saddam, if much, and in what combinations. Since they're not chastened-and that means hit records were not kept, it should not be in- in the pocketbook-they will have all kinds cumbent upon veterans to prove a biological of incentives to sell chemical and biological link between exposure and illness, Sullivan weapons to other dictators in the future, points out. 85 Rather, if they have illnesses as- and that threatens everyone."83 sociated with such exposures, then, accord- In contrast to the veterans of World ing to the law, they can be granted benefits War II and the Korean War who unswerv- such as health care and compensation. Sul- ingly followed government orders even at livan suggests that the cost of these benefits the expense of their health and appropri- may total as much as $6 billion. ate remuneration, veterans of more recent "Because the country hired these soldiers wars-a large percentage of Vietnam veter- and sent them off to war, the nation as- ans and a much larger percentage of Gulf sumed a responsibility for returning each War veterans-have demanded full disclo- veteran to as whole a person as possible sure of the facts and just recompense for if that soldier should be wounded while their sacrifices. The National Gulf War Re- serving," says Sullivan. "More than a le- source Center was the leading organization gal commitment, it's a moral commitment. that pushed through a major compensation The fact that so many have their disability bill, the 1998 Persian Gulf War Veterans Act, claims denied-and that it takes the most directly aimed at both diagnosed and un- intense red tape in order to get assistance diagnosed conditions associated with toxic as a combat-wounded veteran-is uncon- exposures connected with that conflict.⁸⁴ scionable and tells us something about our The law acknowledges that it is not fair that society."⁸⁶ Chapter Eleven Education: Integration in the Least Restrictive Environment THE FAILURE OF THE states, even as late federal court decision in Pennsylvania in as the 1960s, to provide many children with 1971, invoking the Fourteenth Amendment, disabilities with the educational opportuni- required that the state provide every "re- ties they required indicated the necessity for tarded" child with access to a free public appropriate federal legislation. Two experts education.² In Mills v. Board of Education of the in the education of children with disabilities District of Columbia, another district court in observe: 1972 expanded the precedent established in While the nation was seeking to improve the PARC case and ruled that every school- the quality of the minority child's schooling, age child was entitled to a free public edu- the handicapped child's educational needs cation regardless of the nature or severity of remained forgotten, even though these needs the individual's disability.³ were easily as great as those of the most cruelly The Developmental Disabilities and Bill disadvantaged able-bodied children. At that of Rights Act and the Education for All time perhaps one handicapped child in eight- Handicapped Children Act, passed by Con- over one million handicapped children- received no education whatsoever, while more gress in 1975, included principles stemming than half of all handicapped children did not from federal court decisions-primarily receive the special instructional services that PARC and Mills-concerning equal educa- they needed.¹ tional opportunities for students with dis- abilities. The former act provides funding "to assist and encourage states to improve A "Quiet Revolution" care and training for developmentally dis- abled citizens,"⁴ individuals with mental Although the U.S. Constitution does not and/or physical impairments that mani- guarantee every child the right to an ed- fested themselves at birth or in early child- ucation, the Fourteenth Amendment does hood causing substantial functional limi- affirm every person's right to equal pro- tations.⁵ The latter law, renamed in 1990 tection under the law. Favoring the Penn- the Individuals with Disabilities Education sylvania Association for Retarded Children Act, required that each state find, identify, (PARC) in its suit against Pennsylvania, a and assess all children with disabilities re- EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 185 siding in that state, as well as tailor educa- published in March 1971, four years be- tional programs to suit each child's partic- fore the passage of the IDEA, illustrates ular needs by means of an "individualized this tendency: educational plan. It extends to children with disabilities the principle of equality of The prima facie evidence that racial educational opportunities underlying the discrimination sometimes marched under landmark 1954 Supreme Court decision in the flag of special education in many school systems was especially compelling. A Brown v. Board of Education.7 particularly flagrant misuse of handicap The disabilities of many of these children classification was discovered in the Missouri were "undiscovered or misclassified," as the school system. There virtually no black story of Donald Snow illustrates: children were placed in classes for the learning disabled, whereas black children Once a patient at the old Willowbrook State made up about one-third of the students in Hospital, he was mistakenly diagnosed as classes for the educably mentally retarded. mentally retarded when he was tested as a Learning disability, it seemed, obeyed the three-year-old child in 1965. Willowbrook color line in Missouri.¹² employees noted that although he seemed very active, intelligent, and alert, he did appear Two precepts underlying the IDEA, indi- to have a hearing problem. It was not until he vidualizing the programs for students with was nine years old that doctors realized that disabilities and integrating them into the his difficulties indeed were caused by hearing loss, not retardation. Soon after because of mainstream, militated against the continu- this misdiagnosis, Snow won a one and half ation of segregation on the basis of race and million dollar lawsuit.⁹ disability. In fact, the IDEA specifies that "states must establish procedures to assure Although many educational reformers re- that the testing and evaluation materials ferred to the IDEA as a "quiet revolution' and procedures used to evaluate and place in special education," they also harbored children [with disabilities] are not racially reservations about the new legislation.10 or culturally discriminatory."13 The IDEA provides "comprehensive pro- cedural requirements, such as written no- tice, due process hearings, access to records, Enforcing the IDEA: Early Efforts and right to counsel, permitting parental or guardian challenges to an IEP" in or- Implementation of the IDEA, however, was der to ensure that parents play a pivotal difficult. For example, the Children's De- role in the child's education. 11 Reformers fense Fund, led by Marian Wright Edel- were concerned, however, about the primacy man, spent four years in the courts, from of the role of experts-physicians, psychol- 1975 to 1979, obtaining a consent decree ogists, administrators, social workers, and mandating that the state of Mississippi educators-in devising the IEP, and the de- obey the provisions of the law. 14 Rims Bar- valuation of the function of the parents, ber, director of Human Services Agenda, particularly when the parents were at a dis- who in 1979 served as director of the Mis- advantage because they were uneducated, sissippi Project of the Children's Defense non-English-speaking, poor, or minority. Fund, refers to the consent decree as "a One goal of the IDEA was to break the tra- second-generation school desegregation is- ditional patterns of segregation that were sue."15 He explains this characterization: perpetuated by linking racial discrimina- "In the 1968/1969 school year, only white tion with disability discrimination. A study schools had special education classes in I86 CHAPTER ELEVEN Mississippi. After school desegregation in cific criteria, such as an IEP, for devising an 1969/1970, only black children were in spe- appropriate education for each child with cial education classes the following year, a disability between the ages of five and 1970/1971." The purpose of the consent de- twenty-one.18 cree was to prevent racial imbalance in spe- Judge Eugene H. Nickerson's December cial education and to provide remedies to 1979 ruling in favor of the plaintiff in Jose assure that classroom placement was ap- P. ordered the New York City Board of Ed- propriate for each student. After implemen- ucation to evaluate all children with dis- tation of the Mississippi consent decree in abilities and place them in an appropriate 1979, the New York Times pointed out that educational program by April I, 1980. Con- the policy of New York City's public school sequently, the board had to accomplish a system allowed for greater segregation of daunting task: to find and evaluate children children with disabilities from nondisabled with severe disabilities, to evaluate children children than would have been tolerated with less severe disabilities, and to set up an in Mississippi.¹⁶ IEP team for each one of these children with A major reason that the IDEA was inade- disabilities. In New York City in 1979, there quately enforced was that many schools did were approximately thirty thousand chil- not have the appropriate services, certainly dren with severe disabilities and more than not for children with severe or multiple dis- two hundred thousand with less severe dis- abilities. In order to fulfill the mandate of abilities. 19 Since most of the thirty thousand the IDEA, class action lawsuits were filed. newly-found children with disabilities had One lawsuit-Jose P. v. Board of Education- severe impairments-and most of them had filed by Brooklyn Legal Services chief coun- received no formal education whatsoever- sel John C. Gray on behalf of a Puerto Ri- many required special segregated educa- can student with a disability resulted in the tional services. On February I, 1979, when appointment of a special master to oversee Jose P. was filed, the prevailing view at the compliance with the IDEA by the New York Board of Education was that most of the City Board of Education. 17 children covered by this lawsuit belonged in The amici curiae for the plaintiffs in the segregated special education classes. Jose P. lawsuit included Advocates for Chil- The actual plaintiff, Jose P., was repre- dren of New York, as well as the plaintiffs sentative of the many educational problems in United Cerebral Palsy v. Board of Education concerning children with disabilities that and in Dyrcia S. v. Board of Education (a re- the case addressed. Attorney John C. Gray lated case on behalf of Hispanic children described Jose P.: "A deaf child of a non- with disabilities who had limited English English speaking welfare mother, Jose P. proficiency). The plaintiffs in the Jose P. case was a mostly ignored pupil sitting in the argued that the defendants, the New York back of a Bronx classroom in 1979. When City Board of Education and the New York his mother asked about her child, she was State Education Department, failed to com- told to take him to an audiologist to be ply with the IDEA "in a timely manner" evaluated although she had no economic and with Section 504 of the Rehabilitation way of doing that." Act of 1973, which prohibited "discrimina- This situation demonstrates the obsta- tion against handicapped persons in any cles faced by many children with disabili- program which receives federal assistance." ties whose impairments are compounded by The IDEA-dealing only with primary and the poverty and limited English proficiency secondary school education-sets forth spe- of their parents or guardians. The Jose P. EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 187 requirement that the Board of Education excluded these children from "the main- provide bilingual tests, evaluations, instruc- stream of childhood."² tions, programs, and services for those chil- Gray points out that the two most signif- dren whose native language was not Eng- icant factors determining whether a child lish, as well as to ensure that parents of these was integrated or segregated was "the sever- children receive all information in their own ity of the child's disability and the person- language, was designed to deal with one ality of the parents." Gray is referring to of these issues.²¹ Since many of the man- the degree to which the parents believe that dates in this watershed decision were not ad- the child needs special protection in the equately implemented-especially with re- classroom, as well as to the understand- gard to children with developmental and able overprotectiveness of some of these par- learning disabilities, as well as emotional ents. Also, because small towns usually have problems-the lawsuit remained unsettled only a few children with disabilities, Gray by 2000. notes that, where possible, these children have traditionally been accommodated in the mainstream. Least Restrictive Environment In contrast, New York City was "su- persegregated, for these children were not Because the Jose P. judgment necessitated only segregated from nondisabled children first locating the unserved children with but again segregated by specific disability." disabilities and developing IEPs, the "least While some schools served children with restrictive environment" (LRE) requirement mobility impairments, others served blind of the IDEA received little attention until children, others served children with par- the 1990s. The LRE stipulates that, when- tial vision, others deaf and hard-of-hearing ever feasible, the child with a disability children, and still others children with de- should be educated with nondisabled chil- velopmental disabilities. Moreover, regular dren to the maximum extent appropri- education and special education became ate. A child with a disability may be re- separate entities in the New York City Board moved "from the regular educational en- of Education, and within special educa- vironment only when the nature or de- tion "feudal duchies," as Gray labels them, gree [of the child's impairment] is such emerged. that education in regular classes cannot be Another factor reinforcing segregation accomplished satisfactorily even with the was a funding formula by which districts use of supplementary aids and services."² received more money for a child in special ed- To illustrate, although a deaf child or a ucation than for a child in regular education. child with a severe developmental disabil- Although schools were supposedly working ity may be better served in a segregated toward integration of children with disabili- special class than in an integrated regu- ties into regular classes, Gray calls attention lar class, inclusion in the general class- to "the internal contradiction in reward- room is appropriate for many children with ing districts for increasing the number of disabilities. Similar to the vision underly- pupils placed in special education." Also, ing school desegregation for children from Gray states, the requirement in Jose P. that at racial and ethnic minorities, the desegrega- least one elementary school and one inter- tion of children with disabilities improves mediate school in each community district, education "by breaking down the barriers of and one high school in each high school re- prejudice and misunderstanding" that have gion, be accessible proved to be inadequate I88 CHAPTER ELEVEN to serve all the children with disabilities in New York University, characterized the New New York City. Mary Somoza, member of York State educational establishment as un- School Board District 2 and parent of two responsive to the real needs of children children with severe disabilities, Alba and with disabilities. 26 A disability activist, Paula Anastasia, both wheelchair users, points out Wolff, asked Professor Alter, "Why is New that "an accessible school in the same dis- York ranked so low in the country in inte- trict may be so far from a child's neighbor- grating children with special needs into gen- hood that the vital after-school social inter- eral classrooms?" Alter replied, "Culture, a action of the child with a disability with his funding system that was in effect a bounty or her classmates may be precluded." Gray system, and historical justification for that indicates that the Section 504 mandate that system. When I went to school in the Bronx all distinct programs in each district must in the 1950s, I never saw a disabled kid." Alter be accessible-later reaffirmed with compli- was referring to the culture that stigmatized ance dates in the ADA-necessitated even and concealed people with disabilities, and a further retrofitting of school buildings. funding process-violating the IDEA-that Ironically, the children potentially easiest continues to reward schools for segregating to integrate in the classroom, wheelchair children into special education classrooms, users or other children with mobility im- as well as an educational bureaucracy sanc- pairments with at least normal intelligence, tioning these procedures. This approach- frequently could not get to schools or en- common in many parts of the country²⁷ and ter school buildings because of inaccessible still practiced in New York City in 2000- school buses and school buildings. However serves neither children with disabilities who understandable the board's inability to put are isolated from the general population the LRE immediately into effect given the nor nondisabled children who are presented enormity of the challenge posed by Jose P., a false vision of the human condition. disability advocates criticized the board for A former New York City public school its failure to develop an incremental plan teacher in the early 1970s, who taught a to implement the LRE using the IDEA and class of children with physical disabilities, Section 504. These activists conjectured that describes a protest initiated by the pupils had they played a role in Jose P. equivalent to themselves: their participation in the 1980 Dopico trans- portation lawsuit, the LRE would have been The approximately twenty children in my given appropriate recognition by the early class, ranging in age from nine to sixteen, had 1980s. While the Dopico suit-increasing ac- a wide variety of motor impairments. Even cessibility to public transit-fostered inte- though they were very different mentally, emotionally, physically, and socially, they gration of people with disabilities, Jose P. were inappropriately segregated from the has been less successful in desegregating nondisabled kids and lumped together in one children with disabilities in the New York class. As a result, it was almost impossible City public school system.² to teach them. But they were very intelligent and high-spirited. So when the principal prohibited them from using the playground An Appropriate Identity at the same time as their nondisabled peers, my class was outraged. While I was out of the room, they prepared signs expressing At a 1996 panel discussion on special edu- their indignation. Some wore them on their cation, Professor Mark Alter, chair of the bodies; others attached them to the back of Department of Teaching and Learning at their wheelchairs. They planned to stage a EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 189 demonstration, and I decided to encourage hearing aid, a part-time interpreter, and tu- them. Exhibiting their signs, they marched tors enabled the young student to function around the inside foyer that served as the at a very high level. Her parents contended, entrance to the school. They didn't change the however, that since Amy could hear only principal's mind, but they made a statement, and they felt terrific about it. There were no about half of what was said in class, grant- curb cuts or wheelchair accessible buses at ing the additional assistance they sought that time. But there was something in the air, would allow their child to perform up to her and they sensed it.28 maximum potential. "The issue was quickly framed as one of containing the costs, which Assistant Secretary of Education Judith would surely swamp all school systems if E. Heumann reflects on how even more than disabled people were allowed under this law twenty years after the IDEA, as children with to have just anything they wanted."32 disabilities were being included in accessible Acknowledging that Congress intended general classrooms, educators too often re- for parents of children with disabilities to sisted "accepting the reality of disability as be involved with the development of their one of the many ways of being and function- child's IEP throughout the educational pro- ing in the world."29 To illustrate, Heumann cess, the Court nonetheless ruled that the describes a teacher who measured the suc- school had to provide a meaningful, but not cess of the integration of a wheelchair user necessarily the best, education. In his book by the degree to which the pupil refrained about this case, R. C. Smith explains, "Amy from using his wheelchair. "He's more like was cursed in being deaf and bright because the other children now,' the teacher said. she would always get by and always be told This teacher, and too many others like her," she was doing fine. And the courts would Heumann says, "see inclusion as assimila- ultimately demand nothing more from ed- tion rather than desegregation or integra- ucators than that they ensure that disabled tion of children with disabilities. I would children 'get by.' The Court's declaration prefer that teachers encourage these chil- that there was "no congressional intent to dren to acquire an appropriate identity, to achieve strict equality of opportunity or ser- accept and take pride in who they really are." vices" contradicted a fundamental princi- ple of the IDEA: "Each child requires an educational plan that is tailored to achieve The IDEA in the Courts his or her maximum potential." Neither the Court nor the press seemed to under- The 1982 Hendrick Hudson Central School stand that the Rowley case concerned ap- District v. Rowley decision, the first U.S. propriate accommodation, not guaranteed Supreme Court case interpreting the 1975 results: "A [full-time] sign language inter- Individuals with Disabilities Education Act, preter in her classes with hearing students held that the state was responsible for af- was what the family wanted and all the fam- fording children with disabilities an ad- ily ever wanted. Never was there the least equate and meaningful education.³ Amy suggestion that the school be required to Rowley, an elementary school girl with lit- achieve certain results with Amy."35 tle residual hearing, was an "A" student In the 1980s, judicial decisions were in- mainstreamed into the general classroom. consistent with regard to LRE cases. Some Although her parents requested a full-time courts determined that placing children sign language interpreter for their daughter, with disabilities in segregated "handicap- the district argued that its provision of a ped only" schools satisfied the legal require- 190 CHAPTER ELEVEN ments; others demonstrated a strong prefer- In arriving at these decisions, the courts ence for integration and mainstreaming em- compared academic and nonacademic ben- bodied in the mandates of the IDEA. 36 Dis- efits of regular and segregated education. ability rights attorney Diane Lipton main- Included among the nonacademic benefits tains that "still other cases involved stu- were the availability of socialization and dents with physical disabilities, such as role models. Furthermore, the courts con- cerebral palsy or deafness, in which fed- sidered two pivotal questions: What is the eral courts concluded that the physical ac- effect on the other children in the class of commodations and methodologies related having a child with a disability in the regular to these accommodations took precedence classroom? Does the presence of the child over 'the least restrictive environment' is- with the disability in the classroom detract sues."37 In a "precursor" to the 1989 to 1994 from the education of the other children? inclusion cases, the 1983 Roncker v. Walters With regard to the Greer and Holland decision, the U.S. Court of Appeals (Sixth cases, a third question was added: Is the Circuit)-rather than requiring a boy with cost of services-itinerant special education a developmental disability to attend the teachers, supplementary aids, and parapro- school district's segregated "handicapped fessionals-so unreasonable as to impair the only" school-upheld his right to remain education of the other children in the dis- in a special classroom in a regular public trict? Holland won her case against the school. In mandating the child's placement school board at every level: at the adminis- in the more integrated of the two schools, trative hearing, at the federal district court, "the court in Roncker supported IDEA's and at the court of appeals. In 1994, the U.S. presumption in favor of regular education Supreme Court refused to hear the Holland placement." case, thus upholding the court of appeals. From 1989 to 1994, four significant inclu- The testimony of the teachers from the pri- sion cases involving children with develop- vate school-in which Rachel Holland's par- mental disabilities-Daniel R. R. v. State Board ents placed their child during the five years of Education (Fifth Circuit) in 1989 in Texas, of litigation in order to ensure her inclusion Greer v. Rome City School District (Eleventh with nondisabled children-supported the Circuit) in 1991 in Georgia, Oberti v. Board of plaintiff's case in the suit. Education of the Borough of Clementon School Lipton emphasizes that "the teachers District (Third Circuit) in 1993 in New Jersey, were surprised at how Rachel thrived as a and Sacramento City Unified School District v. result of her inclusion in the regular class- Rachel Holland (Ninth Circuit) in 1994 in room, how the other children benefited, and California-resulted in consistent legal deci- how delighted, as educators, they were to sions that the IDEA mandated the integra- learn so much about teaching children with tion of these children into regular classes disabilities. The teachers said that they to- with full supports.³⁸ In keeping with the tally changed their minds about inclusion IDEA, the courts found that children with since it was great for Rachel and great for disabilities must be educated in the least the other kids." Since children with develop- restrictive environment, employing the nec- mental disabilities generally have been con- essary supplementary aids. Moreover, aca- sidered the most difficult to include in reg- demic grade level was not deemed an appro- ular classrooms, these four appellate cases priate factor in determining whether or not impacted on all children with disabilities. children should be integrated into regular "If a child like Rachel Holland could be classrooms. integrated so successfully," Lipton asserts, EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 191 "educators began to recognize that inclu- Keep your chin up and hang tough, sion could work for children with other especially when therapy gets rough! You'll be disabilities, such as physical or learning dis- in my prayers. abilities." A 1994 settlement between plaintiffs Alba Although the publicity resulted in the and Anastasia Somoza, very bright ten-year- school board placing Alba in a regular class, old twins with cerebral palsy, and the New she was not provided with the adaptive York City Board of Education may have been equipment or the trained school person- affected by the uniformity of these four nel that would allow her to benefit fully decisions, together with Anastasia's highly from this placement. Nor was Anastasia publicized interchange with President Clin- furnished with the equipment and services ton. The settlement affirmed the IDEA's that she required to profit from her educa- provision of educational and related ser- tion on a level consistent with her ability. vices for children with disabilities in the Representing both twins pro bono at spe- least restrictive environment. Because Anas- cial education hearings, a member firm of tasia had been placed in a mainstream class New York Lawyers for the Public Interest- while Alba, who is nonverbal, was put in Weil, Gotshal, & Manges-arrived at a set- a special education class, Anastasia said to tlement in which the board consented to President Clinton in a February 1993 tele- several accommodations. The board agreed vised children's town meeting, "I have a twin to give both girls motorized wheelchairs, sister, and we go to the same school. She's to train Alba in the use of her adaptive in a special class. Why can't she be in a equipment, to educate substitute parapro- regular class like me?" The twins' mother, fessionals about the twins' medical needs, Mary Somoza, recalls: and to prepare the school's staff for the integration of children with disabilities into I nearly fell off my seat. I had been working mainstream classes. In addition, the board so hard to get Alba out of special education, where she was not being given anything, offered to make periodic evaluations on the neither an education-since they had no real children's progress. curriculum-nor appropriate supports. Also, With the increasing acceptance of chil- I told Anastasia that she was the only child dren with severe disabilities into regular at that town meeting with a disability, so classrooms, school districts are facing new she would be speaking for all children with challenges in the late 1990s.⁴ Nicholas M.- disabilities. But I never expected her to say what she did. The President had tears in his an educator, disability rights advocate, and eyes, and they've been writing to each other parent of M.M., an autistic child-believes ever since.39 that parents of children with disabilities should have three options: a segregated pro- Mary Somoza proudly exhibits President gram, "partial inclusion," or total integra- Clinton's response to a letter from Anasta- tion.41 If all these alternatives were provided, sia: children could move from one environment to the next as their development progressed. Thank you so much for your great letter Since only two possibilities were available to and for sending the book on water exercises. I'll certainly need it in the next few months. his child in New York City in 1997, segre- My knee is healing just fine, but being gation or total inclusion, Nicholas M. was injured has humbled me and taught me a lot. attempting to create a third choice, what Most especially, I have an even greater respect he called "inclusion with a safety net" or for anyone who uses a wheelchair. "partial inclusion." 192 CHAPTER ELEVEN Having initiated a successful lawsuit in grader Mark Hartmann in a regular class- 1995 against the New York City Board of room with support services, school officials Education in order to obtain intervention reported that the effort was not success- services for two-year-old M.M., Nicholas M. ful: "Still Mark had daily episodes of loud had already experienced the challenge of screeching and often hit, pinched, kicked, confronting a bureaucracy. In 1995, when bit or removed his clothing," they said.43 At the cost of providing early intervention ser- the end of the school year, when officials vices for his child became economically pro- determined that Mark should be placed in a hibitive, Nicholas M. called on New York special class for autistic children at Leeburg Lawyers for the Public Interest, which finds Elementary, Mark's parents sued. firms willing to offer pro bono legal assis- They moved their son 230 miles away tance on specific issues. Using recommen- to attend a regular class in Blacksburg, dations from psychologists and neurolo- Virginia, a town with a reputation for in- gists that M.M. receive Applied Behavioral clusionary policies. In fact, the Blacksburg Analysis (ABA), Weil, Gotshal & Manges- middle school principal, who strongly en- the law firm that represented M.M. in his dorsed inclusion, proudly claimed that the case against the board-argued against the pupils in his school accepted children with board's denial of early intervention services. disabilities as a natural part of the student Like M.M., many autistic children have re- body.44 In order to avoid Mark's placement sponded well to ABA, an almost Pavlo- in a segregated class, Mrs. Hartmann and vian, forty-hour a week intensive therapeu- Mark spent Monday through Friday sepa- tic technique that prepares children for rated from the rest of the family. "We drive learning.⁴² two thousand miles a month, and yes, I "Before the ABA therapy, M.M. was in his need a new car, but it's worth it." Mark own world; he did not make eye contact, is making progress now," Mrs. Hartmann and could not deal with physical contact," observed. Mark's special education advisor Nicholas M. recalls. "When I tried to pick at the Blacksburg school indicated that him up, he would scream, arch his back, Mark demonstrated clear signs of improve- and sometimes even vomit. Now, he climbs ment in school: "Besides becoming better into our bed and cuddles up to me, and adjusted socially, Mark is making academic he can imitate and learn from his peers." progress. In social studies class, he par- Although the firm won the lawsuit on ticipates and takes notes with all the other appeal, employing the IDEA, Nicholas M. is students. And he's getting ready to take a concerned that too many parents of autistic quiz, that we looked at this morning, that children are neither aware of their children's will be the same as the other students in needs, educational and social, nor their the class." rights. Nicholas M., who is also a member After a Loudoun School local hearing of the Autism Advocacy Group-a Staten officer agreed with the school that Mark Island-based parents organization-insists belonged in a segregated class, the Hart- that "programs must fit the child; the child manns challenged the decision in federal must not be forced to fit into someone's district court. Ruling that the Loudoun theory." School Board efforts were inadequate, the In 1993, when the Ashburn Elementary judge sided with the family. The court indi- School in Loudoun County, Virginia, at- cated that "given the strong presumption tempted to accommodate autistic second- for inclusion under the Individuals with EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 193 Disabilities Education Act, disruptive be- The Special Education Controversy havior should not be the significant factor in determining the appropriate educational Examination of preschoolers in public placement for a disabled child." In response schools in New York State-as well as stu- to the 1997 U.S. Court of Appeals (Fourth dents attending Dalton, a fashionable New Circuit) reversal of the district court's rul- York City private school-reveals that place- ing, the Hartmanns commented, "We would ment of students in special education is like the Supreme Court to take the case, too often governed by financial incentives now that we've proven Mark [in 1997, a sixth rather than serving the needs of children grader in Blacksburg Middle School] can be with disabilities. The New York Times re- successfully included." ported that "at least two-thirds of the Mark's father points out, "If you don't [preschoolers in New York State] are en- do this [include children with disabilities rolled in the same school that evaluate their in regular classrooms], we know what hap- disability, a clear conflict of interest. Since pens. To pick a state, 189,000 Virginians the same private nonprofit agency that re- with disabilities are in institutions at a cost ceives payment for teaching these special of eighty-seven thousand dollars a year each education preschoolers has the responsibil- to the taxpayers. If we can get Mark to be in- ity of determining which children will be dependent, earning a wage, being a produc- placed in their special education program, tive member of society, that's a better way to the incentive for these agencies to inflate go." Having spent two hundred thousand the number of children who require special dollars on legal fees, the Hartmanns tried education is obvious. but failed to get the U.S. Supreme Court to The learning disability program from rule on the degree to which the federal law 1984 to 1992 initiated at Dalton demon- requires inclusion in this case. strated that "if there are thirty spots for The U.S. Supreme Court did render a de- learning disability students, you will magi- cision, however, in Cedar Rapids v. Garret F. cally have thirty learning disability students. (1999), a case in which a bright quadriplegic If there are sixty, you'll have sixty."47 Rec- student with a ventilator required a trained ognizing that "too many children were be- aide in order to attend school.4 Ruling for ing given harmful and unreliable labels," the student, Garret Frey, "the Court adhered the kindergarten teachers at Dalton refused to its view in a 1984 case that as long as a to administer the screening tests for spe- student's needs can be met by someone who cial education in Fall 1992. When the test is not a doctor, the required services do not for learning disability was first adminis- fall within the excluded 'medical services' tered in 1984 at Dalton, the number of stu- category." The decision, "a substantial vic- dents requiring intervention of specialists tory" for families of children with severe dis- soared; once the test was abandoned in 1992, abilities, obligates school districts under the the number plummeted. Dalton provided a IDEA to pay for nonmedical services related valuable experiment for evaluating students to a student's education. Justice John Paul with learning disabilities because fewer dis- Stevens stated in the majority opinion, "A torting socioeconomic variables tended to rule that limits the medical services exemp- be present at this preeminent private school tion to physician services is unquestionably than at many other schools. a reasonable and generally workable inter- New York City Schools chancellor Ru- pretation of the statute." dolph Crew announced a proposal in 1996 I94 CHAPTER ELEVEN to deal with the bloated segregated spe- teachers, the support systems to meet the cial education program in the New York needs of these youngsters."⁵ City public school system, involving chil- Some parents were apprehensive that dren with physical, sensory, or multiple their children suddenly would be trans- disabilities, emotional or cognitive impair- ferred from a small special education class ments, and chronic illnesses. Consistent to a large general education class with with programs in other cities, the plan neither forethought nor appropriate assis- was supposed to allow students with so- tance, such as technical aids and parapro- called minor learning disabilities as well as fessional help. Still other parents expressed behavioral problems to receive extra help skepticism about the preparation of teach- from teachers and therapists while remain- ers and students for diversity, involving not ing in regular classrooms.⁴⁹ Some of the only pupils from different cultures, but also stated purposes of the plan-cutting the with various disabilities. Referring to the cost of special education and preventing disproportionate number of non-English some children from inappropriately being speaking students placed in special edu- designated as special education students- cation in New York City, Advocates for may have been achieved, but not to the Children attorney Roger Juan Maldanado benefit of many children with special needs. wondered if evaluators who cannot under- For example, by failing to test many stu- stand the child's language or culture can dents whom teachers recognized as having accurately determine the student's disabil- special needs, the system never included a ity status. significant number of these children in the The 1997 reauthorization of the IDEA in- statistics pertaining to special education. cludes two requirements addressing some As a result, although the number of stu- of the concerns of those who criticize the dents in special education may have been implementation of the law. First, the IEP limited, too many of them were permitted must consider the language needs of the to flounder in general education without child with a disability; second, a state can- the programs or supports they required for not have a funding formula that is a dis- success. incentive to integration of children with Still, Crew's plan did focus attention on disabilities, referred to as "inclusion." At- the thorny issues inherent in special ed- torney Diane Lipton suggests that although ucation. Disability advocates, parents of in some states the second requirement may children with disabilities, and educators be sufficient to eliminate the disincentive prophetically feared that if the driving force to inclusion, in other states a lawsuit may behind the changes in the New York City be necessary to make the second mandate school system was budgetary, then children effective. with "mild disabilities" would be "dumped" The federal government's threat to deny into general education without the support a significant portion of education fund- of the IDEA-which includes the protection ing to states that do not comply with the of an IEP, designed specifically for each stu- IDEA may well serve as another effective dent. 50 As education professor Mark Alter implementation mechanism. For example, explains: "If that youngster [a student with the 1999 New York State financing formula academic or behavioral problems] is to re- "encourages schools to put children in the main in general education, there must be most isolated environments, because they appropriate supports for that kid. Right [schools] receive more money for a self- now, they don't have the resources, the contained special-ed class than any other EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 195 type of class." Consequently, in 2000, New dren leave school without diplomas and York State could lose $335 million in fed- that an enormous number of them end up eral funds, money the federal government in jail soon afterward. Fewer than 2 percent has warned New York would be withheld of them go on to four-year colleges-as com- because of the state's noncompliance. pared with about 28 percent of students who The two plans proposed to correct this are visually impaired and I5 percent of the situation demonstrate the difference be- deaf." Staples points out that the explosion tween a genuine effort to educate children in learning disabilities in the 1980s can be with special needs as opposed to a short- attributed to the move from teaching read- sighted, supposedly cost-saving approach, ing by the phonics method as opposed to assuring failure. Allowing a "reasonable" "the 'whole language' craze."⁵⁶ Fearing that seven-year phase-in period, the State Re- these children are being dragged "indiscrim- gents Plan provides incentives for school inately into the mainstream," he compares districts to place special education students their plight to the experience of children in integrated environments with support with disabilities before the 1970s when many service-"where students are more likely to were institutionalized, hidden away, or even improve their academic performance, com- strapped into their chairs screaming.57 munication, and socialization." In contrast, While "6o Minutes" commentator Leslie Governor George Pataki's plan offers prac- Stahl presents the issue as a contest between tically no support services and proposes an children with disabilities and nondisabled unrealistic two-year phase-in. children, she acknowledges that "twenty- The primary reason that special educa- five years ago [many children with disabili- tion has become controversial is because of ties] probably wouldn't have had any kind of its increasing costs. New York Times colum- school. Unless parents could afford to pay nist Brent Staples argues, however, that de- for special care, disabled children were of- spite such costs, special education is no ten ignored or institutionalized, sometimes "scandal" as some critics have claimed.54 in appalling conditions." Regardless of the Concerned that "states have embarked on cost, Stahl notes, "it's very hard to criticize a campaign to define learning disabilities the current system. No one wants to go back out of existence," Staples questions what he to the bad old days."58 views as distorted priorities: "The central Yet Stahl observes the increasing num- goal was always to educate children who bers of children designated as disabled: had traditionally been viewed as ineducable. "One in every eight public school children in Integration was an important but distinctly this country is now in special education secondary objective." He is especially wor- That's more than five million children, and ried about children with "abnormal activ- special education now costs taxpayers more ity in the parts of the brain that process than thirty-two billion dollars a year. That's phonemes," who are being labeled inappro- one-quarter of all school money being spent priately as "mildly disabled." Since in a small on one-eighth of the kids." Therefore, Stahl percentage of children "the brain processing indicates, parents of children in regular ed- mechanism is off kilter,"5 most educators ucation are concerned that their children and disability advocates believe that these are being "shortchanged in order to pay for students benefit from intensive and long- special ed." term supports. Another parent complains that instruc- Citing government data, he adds "that tion for his nondisabled children was "being about 43 percent of learning-disabled chil- pared back to pay for special education," I96 CHAPTER ELEVEN for example, by "the elimination of the are trained to meet their special needs. And program for gifted and talented children." further, that disabled children who are not This parent exhibits the same "either/or as severely impacted should be moved into fallacy" in his thinking as does Philip K. the mainstream only when necessary support services have in fact been contracted and are in Howard who states in The Death of Com- place at the school; when the administrative mon Sense: "Gifted students, in contrast to and educational staff have received the disabled children, receive virtually no sup- training to understand the rights, available port or attention from America's school sys- services and learning styles of these students, tem."59 Both comments-the parent's and and when the peers of these students, their Howard's-suggest that disability and intel- parents, and the parents of the disabled ligence are mutually exclusive. students have been part of the transition The mother of a child with a severe planning process.⁶ disability sees the debate from another Though educators agree that with proper perspective: preparation and supports "mainstreaming students with minor disabilities would be That's the kind of thing [special ed] I want my tax dollars to go for. I see it as an healthier and far less costly than the seg- investment. I see this school as a boot regated approach," New York City has had camp experience for him, a really intense a history of mainstreaming roughly one- time when he can gain as much skills as he fourth the percentage of special education can because in the long term, if he didn't preschoolers as compared to the nation as learn how to brush his teeth by himself, a whole. 62 The detrimental effects of mis- and he didn't learn how to get around in an electric wheelchair, and he didn't learn how classifying children and unnecessarily seg- to effectively tell people that he needed to regating them are compounded, for once use the bathroom, then for the rest of his designated as learning disabled or emotion- life we would have to be paying people to do ally handicapped, children tend to retain the that. Now we're not going to have to [pay for label and the stigma throughout their ed- these services]. I don't want our child or any ucation. Even for children properly placed other child who has disabilities that they had in special education, however, the IDEA's no control over to be scapegoats for a much requirement that they be reassessed each larger problem. year in order to be given the opportunity "The much larger problem" to which to be mainstreamed is generally ignored.⁶³ this mother referred is addressed in a New Some educators, including Secretary of York Times editorial that reveals that while Education Richard S. Riley and Assistant problems in special education are evident Secretary of Education Judith E. Heumann, throughout the nation, New York has a far maintain that rather than ameliorating the less successful program than many other educational situation for children who were localities. 60 For example, special education not succeeding in school, special education experts and parent advocates Barbara Fisher has segregated and demoralized many of and Richard Spiegel, who "lobbied long these students. A majority of children in and hard" for the IDEA, doubt that New New York City's special education program York City's education system has the flexi- are classified as learning or emotionally bility to deal with the variety of approaches disabled, often ambiguous and subjective necessary to serve children with special designations that still lend themselves to needs: racial and ethnic stereotyping: We believe that the most fragile of our children are best served and should remain New York City's special education system in environments where instructional staff ensures a second-class education, particularly EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 197 for black boys, becoming a trap that incubates numbers of students with invisible disabil- failure Nationwide, black students are ities, especially learning disabilities, when twice as likely to be in special education these students entered college, they faced programs as white children, with much new challenges. In late 1995, the provost higher rates in predominantly white districts, according to some academic studies. Yet, of Boston University (B.U.), Jon Westling, these same students perform better in regular who was not a learning disabilities expert, classes with extra support, federal studies "stiffened" the institution's policy regard- suggest. While many agree on the need ing "reasonable accommodations" for stu- for specially geared classes for profoundly dents with these conditions.⁶² To support retarded children or those with other special his approach, on several public occasions needs, many advocates and educators say he referred to Somnolent Samantha, a sup- New York has gone too far. The degree to which children identified as disabled are posedly real student with a learning dis- taught in regular classrooms varies widely ability, who turned out to be fictitious. As from state to state. In Vermont [in 1994], 87 a result of his policy changes at B.U., ten percent of special education students were in students with learning disabilities, encour- regular classes, compared with 7 percent in aged by advocacy groups for such students, New York [City].⁶⁴ filed a class action lawsuit in federal dis- trict court in Boston in July 1996 against Since 1989, when Vermont removed fi- Boston University. nancial incentives for keeping children in The university lawyer responsible for the segregated placements, the state has been case, Larry Elswit, argued that the suit the model for integration of children into "is about a university's right to set aca- regular classrooms. The 85 percent of the demic standards," for, he added, the ADA annual budget for children with disabilities, does not prevent an academic administra- formerly allocated for separate classes and tor from participating in judgments about separate schools, instead was spent on ex- academic modifications. On the other hand, tra teachers, aides, therapists, and services the learning-disabled students contended in regular schools. "According to the cur- that "the University and Mr. Westling have rent concept, special education is a service," violated Federal laws requiring that educa- Heumann explained to a disability studies tional institutions provide 'reasonable ac- colloquium, "not a place. "66 Heumann was commodations' to those with learning dis- pointing out that since each student should abilities." Advocates for people with learn- be educated in the least restricted environ- ing disabilities asserted that Westling's "dis- ment appropriate for that individual stu- missive words and actions" regarding this dent, the money for services should be con- issue were tantamount to "illegal discrimi- nected to the learner, not limited to a special nation." education classroom. Consistent with this Boston University's Office of Learning approach, in Vermont after 1989 "special ed- Disabilities Support Services achieved na- ucation money followed the children [with tional recognition for the services it pro- disabilities] to the regular classes." vided for students with learning disabili- ties: a summer program, appropriate tutor- ing, relevant information, and special as- Somnolent Samantha sistance. Of the twenty-nine thousand stu- dents registered at Boston University, only Although with the passage of the IDEA, 480 were learning disabled. Many of these elementary and secondary schools systems students specifically had chosen this school were becoming increasingly aware of the because it was reputed to have the supports 198 CHAPTER ELEVEN they required. Elizabeth Guckenberger, a bar." Yet Boston University Chancellor John dyslexic third-year law student, describes Silber's comment was not supportive of stu- her experience: dents with learning disabilities: "Some of the things that pass for learning disabilities I was drawn to B.U. because I thought there would be an attitude of understanding about used to be called stupidity."6 In her 1997 learning disabilities. I have always had to work decision favoring the plaintiffs in Elizabeth very hard. Things take me much longer than Guckenberger v. Boston University, Judge Patti they take my twin sister, who is not dyslexic. B. Saris stated: I'm doing well in law school, but I need my accommodations. I get a reduced caseload, B.U.'s internally contentious, multitiered which means I'm not going to finish in the evaluation process involving evaluators usual three years, and I get extended time on who were not only inexperienced but also tests and a quiet room to take them in. biased caused delay and denial of reasonable accommodations and much emotional Applying the ADA definition of discrim- distress for learning disabled students. The ination, this lawsuit was spearheaded by court concludes that the implementation of Anne Schneider, who claimed that her B.U.'s initial accommodations policy violated daughter, a B.U. student with learning dis- the ADA and Section 504 during the 1995-96 academic year.70 abilities, had not received the services she had expected from the university.68 Having Too frequently, experienced educators worked ten years with students with learn- like Westling are skeptical of "learning dis- ing disabilities and their parents, Schneider abled" as a diagnosis, learning disabilities as labeled the implicit accusation that these bona fide conditions, and the experts who students are frauds "the big lie." She in- identify the symptoms. Familiar with nei- sisted, "I haven't seen a phony yet"; the uni- ther these disabilities nor the appropriate versity has to "abide by the law and stop the techniques for dealing with them, educators harassment." Indicating that it would have may be suspicious of students who request been easy to have hired tutors and other special services designed for people with personal accommodations for her daughter, learning disabilities. Officials on campuses Schneider noted that her concern "tran- other than Boston University claimed that scends the personal: I don't sleep at night they were seeing students who paid for di- because I worry about all the other kids agnoses that were "dubious" and then de- [with learning disabilities], and not just the manded services that they did not require.71 four hundred eighty [in the B.U. learning With a growing sensitivity to diverse disabilities program]. B.U. became the na- learning styles and the development of new tional model. We were the example of how teaching strategies, educators-rather than to do it right. [So] we're talking about three merely weeding out "poor students"-have hundred fifty thousand kids [with learning sought to educate an increasingly wide spec- disabilities] across the country." trum of learners. By the late 1990s, stu- Speaking for university administrators, dents with learning disabilities comprised however, Elswit claimed that the issue is roughly 5I percent of the students with dis- basically academic: "Within our academic abilities from kindergarten through twelfth standards, we will do whatever we can to grade, and more than twice as many college help students with learning disabilities over students-3 percent since 1988-identified the bar. Time and a half on tests and note- themselves as learning disabled. Since ADA takers can be fine efforts to help students detractors often cite people with invisible over the bar. What we won't do is lower the disabilities as examples of an unexpected EDUCATION: INTEGRATION IN THE LEAST RESTRICTIVE ENVIRONMENT 199 population served by the ADA, individuals told by the teacher. Education is learning with conditions such as learning disabilities how to interact with others." often bear the brunt of criticism against Heumann agrees with Stussman that "all the law. students in inclusive environments benefit from learning that although human beings can vary greatly in appearance, background, A Microcosm of the Real World and perspective, all people have their hu- manity in common."5 Students with dis- Just as accommodations for people with abilities are served because, if they are pro- disabilities serve the general population (as vided with adequate supports and resources curb cuts help many others besides those in in the general classroom, they are more wheelchairs), the approaches used in special likely to be held to the highest standards education are valid for all students, observes of achievement than if they are segregated. special education expert Richard Spiegel.⁷² Integration increases the probability that "Rather than taking for granted that each these students with disabilities will secure student has to learn according to some arbi- challenging jobs, earn good salaries, and trary standard arrived at by somebody in a participate fully in the community. "It is think tank," he adds, "educators could mea- not the way people communicate, transport sure the growth of each student according themselves from place to place, or sense the to an individual evaluation. Using this ap- world that limits their ability to achieve," proach, instead of just being a weeding-out Heumann maintains; "it's the way society process, the education system could serve reacts to them." all children." As Assistant Secretary of Ed- By studying, working, and playing with ucation Heumann notes, "In a way you can peers with disabilities, nondisabled stu- see every child as having special needs. So dents also profit, "for they gain lasting the ideal is a system in which every child lessons of character as valuable as academic gets an individualized education." knowledge," Heumann asserts. She offers Born with cerebral palsy, Barak Stuss- an example that supports the findings that man, a technology coordinator for ACCESS the achievement of nondisabled children ERIC in Rockville, Maryland, demonstrates may even improve when they have class- why inclusion, like an individualized educa- mates with significant disabilities: tion, benefits nondisabled students as well I have been told about a disabled child who as students with disabilities.⁷ Describing had very few communications skills, who himself as "living the American dream- was placed in an inclusive class in Tulsa, married, with two cars, two kids, and a Oklahoma. Before she got there, the children mortgage on a townhouse," Stussman in- in the class had a reputation for being less dicates that with the advent of new tech- than attentive in class. But when the disabled nology and new legislation, in the future student arrived, the students took great "adults will have to deal with people of dif- pride in learning what she meant when she ferent limitations." Stussman asserts that made various sounds and in interpreting her sounds to the teacher. In order to learn what this interaction fösters learning: "I believe their new classmate was saying, the students the public school system should be a micro- became quieter in class, and by the end of the cosm of the 'real world.' Education is more semester, everybody was learning more. than just what you learn in books and are Chapter Twelve Identity and Culture Three Strands of the Movement access to society that disability rights legis- lation provides. Edward Roberts, Judith E. Lex Frieden, former director of the Na- Heumann, Fred Fay, and Lex Frieden are tional Council on Disability, refers to the examples of early leaders of the disability two "strands" of the disability rights move- rights movement who were intrinsically in- ment that came together in the effort to volved in both of these two strands. pass the Americans with Disabilities Act.¹ There is, however, a third strand-com- The first strand-made up of people with prised of institutionalized people with signifi- disabilities living independently in the com- cant disabilities-focusing on deinstitution- munity, without personal assistance services- alization with all the supports necessary emphasizes civil rights as a means of se- to allow them to live in the community. curing equal access to transportation, ed- Wade Blank and members of the contin- ucation, employment, housing, and health uing ADAPT crusade, who are identified care. The second strand-composed of peo- with this strand, brought the issues of in- ple with severe disabilities who require per- stitutionalized people with disabilities to sonal assistance services in order to live inde- the wider disability rights movement. Fred pendently in the community-stresses the Fay of Justice For All observes, "Shamefully, services they need for maintaining their in- here in America we have a couple of mil- dependence. lion people with disabilities incarcerated in Despite the different priorities embodied institutions-many against their will, many in these two strands, they share common drugged into silence, many strapped down goals, as the struggle for the ADA demon- in their beds-people who, with a little assis- strates. Many people who are now living in- tive technology and a little attendant care, dependently in the community without per- could be living productive lives in the com- sonal assistance services recognize the in- munity."2 Isolated not only from the greater evitability of the decline that comes with ad- society, but also until the 1980s from the dis- vancing age, and hence, their eventual need ability community, this third strand infused for such services. Many people who now the disability rights movement with a new require personal assistance services need the radicalism and militancy. IDENTITY AND CULTURE 20I Cheryl Marie Wade, 1994 recipient of a Disability Pride: National Endowment for the Arts Solo The- Celebrating Difference atre Artist Fellowship, comments sardon- ically on the alienation of people associated Disability activist Mary Jane Owen chal- with this third strand from the mainstream lenges the obvious impediment to the devel- disability community: "OK. I admit it. I opment of a group identity by people with am weaker and more vulnerable than most disabilities: "It's hard to organize around nondisabled people and many disabled peo- having something in common-disability- ple, too. So throw me out of the movement. that none of us really wants."5 Yet she Take away my Crip Power button."³ Yet she presents an analogy between people with explains: disabilities and another minority group: "But the children of slavery came together We who are on the outside, living around physical characteristics that the ma- independently, using attendants for intimate jority society taught were ugly. 'Black is care, owe to those of our brothers and beautiful' seemed an audacious assertion sisters still dependent on family care or when it was first made." Similarly, Owen institutions to tell the truth about the pain suggests that despite the marginalized sta- and struggle of this life as well as the joy and freedom. But if our shame tells us tus imposed on the disability population that our needs lack dignity, that we lack by the greater society, people with disabil- dignity, then the next thing we hear our ities can bond with one another in mu- shame say is that it is more dignified to tual affirmation. die than to live with these basic needs that How can people with disabilities join with take away our privacy and seem like such a other people with disabilities unless they burden. feel pride in themselves and a desire to identify with, and be among, others with Nonetheless, Wade clearly positions herself disabilities? "When I was growing up, I was on the side of life: "But it [personal assis- terrified of walking into a room of peo- tance services] is the only deal in town. And ple with disabilities and admitting that I no matter how difficult, well worth it when was one of them. Now I just love being you consider the alternatives." in a community of people with disabili- The contradictions, the "gnarled strands" ties," says Leslie Heller, who has cerebral of "the disability experience," have been palsy.⁶ How do people who have been stig- characterized as a "hard to unravel tan- matized, even ostracized, acquire this pride? gled, knotted ball" of Do they take the stigma and transform it into a badge of honor, as does Nadina isolation and differentness versus a common LaSpina? "I would not trade my disabil- identity; images of weakness, vulnerability, ity for anything. We will not change to enforced childishness, learned helplessness fit the mold. Instead, we will destroy the versus defiance, willingness to make waves mold and change the world to make sure and change the status quo; pity, destroying there is room for everyone," insists LaSpina, dignity, fear of our differentness, our who has polio. She is referring to her be- "imperfection," as if perfection were humanly achievable; and then our own fear, raw fear lief that by means of legislation, regulation, of attitudes that would destroy our kind, and technology the world should adapt to whether by genocide, selective abortion, her needs. euthanasia, assisted suicide or rationing LaSpina used analogy to explain her feel- of care.⁴ ings: 202 CHAPTER TWELVE I'm proud of being Italian. There are things opportunity to find out who I really am. I had I'm ashamed of, like the existence of the to start from square one to become a member Mafia-but these things do not stop me from of a community that from time immemorial embracing my Italian-ness. I love being a has been discriminated against and viewed as woman, but I hate going through menopause. defective by mainstream society. Transferred But I wouldn't want a sex-change operation to a world of disability culture, I developed just because of menopause. Certainly the pain deep and meaningful relationships with and physical limitations of disability are not people in the disability rights movement. wonderful, yet that identity is who I am. And Some became disabled early in life; some like I am proud of it.⁷ me became disabled later in life, but they all took pride in who they were and what Is this disability pride really a reflection they were doing. They encouraged me to feel of what Erik H. Erikson defines as "ego attractive and creative and powerful in my own way. I don't have to be angry or full of integrity," the last of his "eight ages of self-pity anymore. These are my people. 12 man": "the acceptance of one's one and only life cycle as something that had to Interweaving narrative, journal entries, be and that, by necessity, permitted of no letters, and poetry, Jean Stewart recounts in substitutions"?8 Especially for those born her autobiographical novel, The Body's Mem- with a disability, or those who become ory, her own personal transformation after disabled at an early age, their disability is becoming disabled at the age of twenty- as much a part of their "one and only life eight-her discovery of her new identity as cycle" as any of their other characteristics. an activist in the disability rights move- Therefore, the individual sense of pride that ment:¹³ a person with a disability feels must refer to that self that evolved with a disability, not After surgery because a tumor on my hip left some substituted nondisabled self. me motor impaired, I experienced profound depression. I lost my bearings entirely. When For an individual who becomes disabled I went down the street, it seemed as if I was after forming a sense of self as nondis- invisible. My disability had such a profound abled, the new identity as a person with a impact on my sense of self that I felt sexually disability may be nurtured by establishing erased. Before I became disabled, I had relationships with other people in the dis- self- identified as a writer and a member of ability community whose sensibilities have movements for social change. Now an issue been shaped by similar experiences.⁹ Daniel of social change arrived on my doorstep with a resounding thud.14 Robert, a movie prop man before he was di- agnosed as having multiple sclerosis, forged She recalls that her introduction to dis- a new self-image as a person with a dis- ability rights made her aware of her kinship ability by becoming a disability rights ac- with "an oppressed minority, [her] own peo- tivist. "Once I stopped being what I had ple," peers who understood her experiences been, I needed to be part of a commu- and whose experiences she understood. nity," Robert explains. 10 "I see pride most Now that she had what she considered "a re- strongly when I can be proud of others in the alistic frame of reference," she had reason to community," Robert notes, emphasizing his carry on despite chronic pain and demoral- belief that disability pride cannot happen ization. "My role models were indomitable. in isolation:11 They were gutsy; they just bulldozed their Before my disability, I was a superficial way through obstacles. They showed me person, caught up with competitiveness how to use my anger and indignation pro- and machismo. The disability gave me the ductively. In a no-nonsense way," she says, IDENTITY AND CULTURE 203 "they were changing the world." Since there crimination." Soon her work would center seemed to be no such organization, in 1994 around independent living and disability she founded the Disabled Prisoners Justice policy development on a local and national Fund to link prisoners with disabilities- level. "But these two events," Bristo points one of the most vulnerable and abused pop- out, "provided the spark that connected me ulations in the country-with attorneys.15 to my true identity as a woman with a dis- As a result of a 1977 diving accident, ability and the emerging movement for the Marca Bristo-president and CEO of Access rights of people with disabilities." Living, the Chicago independent living cen- Steven E. Brown, cofounder of the Insti- ter, as well as chairperson of the National tute on Disability Culture in Las Cruces, Council on Disability-became a wheelchair New Mexico, observes: user as a young adult. 16 "My initial response was to go on with my old life," Bristo notes, People with disabilities have forged a group "so I didn't try to extend my relationship identity. We share a common history of oppression and a common bond of resilience. with other people with disabilities. But two We generate art, music, literature, and other incidents pulled me out of my denial and expressions of our lives and our culture, started me on a journey that enabled me to infused from our experience of disability. meet many remarkable people with disabili- Most importantly, we are proud of ourselves ties and to be involved in a time of historical as people with disabilities. We claim our change in the disability rights movement." disabilities with pride as part of our identity. The first incident occurred after her rehabil- We are who we are: we are people with disabilities.¹⁷ itation for a spinal cord injury. "I wanted to continue my work as a nurse by going into Robert F. Murphy in The Body Silent de- teaching and research," Bristo remembers. scribes how his degenerative disability, a Because Vocational Rehabilitation consid- tumor of the spinal cord leading to atro- ered her career goal unrealistic, the agency phy of the body, impelled him to exam- refused to support her in her effort to ac- ine the society of people with disabilities quire a master's in nursing. She appealed with the same analytical tools that he used and won. to study esoteric cultures in remote geo- Perceiving her struggle as "self advocacy," graphical areas, such as the southern Sahara Bristo describes herself as "still feeling dis- and the Amazon. 18 His argument is that connected from the movement." She refers people with disabilities inhabit a separate to the second incident, however, as "the one culture inside the wider culture. As Mur- that made me self-identify as a person with a phy states: disability, that made me reach out to others with disabilities, that made me relate my Just as an anthropologist gets a better perspective on his own culture through disability to my work." While reviewing pa- long and deep study of a radically different tient charts, she realized to her dismay that one, my extended sojourn in disability unlike all the other patients, none of the has given me, like it or not, a measure of women with disabilities were asked ques- estrangement far beyond the yield of any tions regarding their sexuality. "I was struck trip. I now stand somewhat apart from by the way the sexuality of these women American culture, making me in many ways was being negated," Bristo indicates, "and a stranger. And with this estrangement has come a greater urge to penetrate the I recognized that my own experience of veneer of cultural differences and reach an disability and my observation of disability understanding of the underlying unity of all had a political dimension. It was about dis- human experience. 204 CHAPTER TWELVE Murphy recalls his protestations at the ample, in 1982, Cass Irvin of The Disability following comment made by a black anthro- Rag, a newspaper devoted to recording and pologist colleague: "I always think of myself preserving the history of people with dis- as being black just as you always think of abilities and their rights movement, regis- yourselfas being white." With Murphy's dis- tered her skepticism regarding this concept: ability came a realization that "I [Murphy] "Unlike most minority groups, we [people would no more have thought of myself as with disabilities] do not have our own cul- white than I would have thought of myself ture and traditions. But we do have a past as walking on two legs." In other words, and we should learn about it and feel pride when one is within the so-called "normal" in the accomplishments of our forebears group, one does not know there is a clas- and we should feel anguish at how badly sification; it is what ethnolinguists call an our people have been treated."2 "unmarked category." When one feels com- By 1994, however, Carol Gill, a quadri- pelled to defend oneself against a hostile plegic psychologist who was one of the environment, then the reality of both the first to use the term "disability culture," environment and the individual's "embat- referred to some of the "core values shared tled identity" becomes evident. by people with disabilities" such as "tol- Murphy's dedication of his book, "To all erance for others' differences" and "highly those who cannot walk-and instead try to developed skills at managing multiple prob- fly," underscores his conclusion: lems."2 Elaborating on her perception of the resourcefulness that people with dis- It takes a rare combination of intelligence, abilities are required to develop because of courage, and persistence to conquer the mental and physical quarantine thrown their differences, Gill describes her "ideal up around the disabled by a society that world": secretly sees in them its own epitaph The intensity of purpose required by the drive Society would accept my experience as for autonomy makes the successful people "disability culture," which would in turn be [with serious disabilities] unusual. They have accepted as part of "human diversity." There entered the mainstream of social life, and they would be respectful curiosity about what I have done this through great determination have learned from my differences that I could and unflagging effort. teach society. In such a world, no one would mind being called Disabled. Being unable Murphy explains how nonetheless, they to do something the way most people do it have forged their own culture: "But no mat- would not be seen as something bad that ter how well they become assimilated into needed curing. It would be seen as just a society, their struggle sets them apart from difference.²² their able-bodied fellows. They have a dif- ferent history and follow a separate agenda; Gill reflects on the social value of diver- they remain part of the Other. Their other- sity: ness, however, is positive and creative, for their self-assertion is a profound celebra- Differences might make you proficient in tion of life."19 some contexts, deficient in others, or not The meaning of the term "culture" be- matter at all. For example, if I can't run, I comes so modified when linked with dis- might be an inferior messenger if time is critical. However, my inability to run might ability that until the 1990S many disability just as likely have stimulated me to address activists did not accept the authenticity of time more creatively or to develop ways to the concept of "disability culture." For ex- send messages swiftly that are as efficient IDENTITY AND CULTURE 205 as running, or vastly superior. In other ited amount of advantage to go around and words, ideally, even if I had a difference that disabled people will use it all up-more than might impinge on me in some contexts, I fairness. The Declaration of Independence wouldn't be judged generally deficient because was really about a strategy to make the best a recognized feature of Disability culture would be the fact that such limitations can community we can." be fodder for innovation and for a rich and Deborah Ossoff Yanagisawa, a disability valuable human experience. activist who is legally blind, remembers that she was always uncomfortable when people The well-known journalist John Hocken- treated her disability as an unequivocal dis- berry, who has a spinal cord injury, also aster.24 Having grown up happily in a family describes disability as a cultural resource in which congenital blindness was common, that the wider society ignores at its peril: she wanted to say, "Maybe, but maybe not." "Suppose, when making his case for being Among her responses to her disability, she allowed to use a golf cart, Casey Martin- realized, were positive feelings like her sense the professional golfer with a disability- of community and pride stemming from said, 'Yes, of course my disability constitutes her connection to the culture of disability. an advantage because like other people with "I knew," she adds, "that some folks' as- disabilities, I have expertise in adapting to sumption that my life was spoiled by my change.' But no, he said needing the golf disability was simplistic and incomplete." cart is a disadvantage, and so the market- When Yanagisawa read the following para- driven homogeneous mainstream could say, ble, she was struck by how well it matched 'all's right with the world.'"23 Hockenberry with her own experience. The story begins asks, "Why aren't people with disabilities a by acknowledging that although "being dis- source of reassurance to the general public abled is a deep wound, a source of pain," it that although life is unpredictable and cir- is, similar to other wounds, also "a gift": cumstances may be unfavorable, versatility and adaptation are possible; they're built As Eastern wisdom has always known, it is hard to tell good luck from bad luck. I recall into the coding of human beings?" the old story about the farmer who found "Why is it," Hockenberry continues, "that a beautiful wild horse, and the neighbors a person would not be considered educated said, "What good luck," and the farmer said, or privileged if he went through school "Maybe." Then the farmer's son tried to tame and never learned there was a France or the horse and fell off, breaking his leg. The a French language? But if a person went neighbors all said, "What bad luck," and the through school and knew nothing about farmer said, "Maybe." Then a war started and the army came to conscript all the young disability, never met a disabled person, never men, and they took everyone's son except the heard of American Sign Language, he might farmer's son with the broken leg. "What good be considered not only educated, but also luck," the neighbors said, and the farmer lucky? Maybe we in the disability commu- said, "Maybe." And on and on it goes. Life is nity," Hockenberry suggests, "need to get the way it is, not the way we wish it was, and out of the clinical realm, even out of the disability is a constant embodiment of this basic truth.25 equity realm, into the cultural realm, and show that a strategy that leads to inclusion Disability culture is gaining increased makes a better community for everyone. acceptance in the academic world as evi- That's really what the Declaration of Inde- denced by the hundreds of disability stud- pendence was about," Hockenberry. asserts, ies courses nationwide,26 such as Nadina "more than advantage-as if there was a lim- LaSpina's "Celebrating Difference: Disabil- 206 CHAPTER TWELVE ity Culture," offered in class and on-line denial of the presence of impairments, nor since Spring 1995 at New York City's New a rejection of the utility of intervention and School for Social Research. A number of treatment. Instead, Disability Studies has other scholars with disabilities, among been developed to disentagle impairments them Paul Longmore at San Francisco State from the myth, ideology and stigma that influence social interaction and social policy. and Phyllis Rubenfeld at New York City's The scholarship challenges the idea that the Hunter College, have been fostering an ap- economic and social status and the assigned preciation of disability culture by working roles of people with disabilities are inevitable toward the creation of disability studies pro- outcomes of their condition. grams in their respective institutions. At the University of Illinois in Chicago, a graduate Disdainful of pity, disability culture-a program in disability studies was approved major focus of disability studies-celebrates in Fall 1998.² Indicating that the topic of its heritage and sense of community, using disability is slowly working its way into his- the various forms of expression common to tory, literature, political science, and soci- other cultures such as, for example film, lit- ology courses, David Pfeiffer, editor of the erature, dance, and painting. Walter Brock's Society for Disability Studies' SDS Quarterly, 1998 film If I Can't Do It evokes both the likened disability studies to ethnic studies. painful social alienation of Arthur Camp- Just as university departments are devoted bell Jr., a highly intelligent person with se- to an examination of gender, race, or ethnic- vere cerebral palsy, as well as his later exhil- ity, a disability studies program would treat aration resulting from his political leader- disability as an "ordinary human variation," ship in disability militancy.29 Portraying the explains Rubenfeld. film as "ultimately less about disabled peo- Professor Simi Linton, a scholar and ac- ple than about viewers' own feelings," Mary tivist with a disability, and her colleagues at Johnson, in her review of Brock's work, reit- Hunter College have developed a working erates the film maker's own words that open definition of disability studies.2⁸ Focusing the documentary: on disability as a "social phenomenon, so- cial construct, metaphor and culture," dis- Mr. Brock says that Mr. Campbell had been described to him only as a disability ability studies "reframes" the study of dis- rights activist. He wasn't prepared to meet ability "utilizing a minority group model." a man with severe cerebral palsy and barely Disability studies not only explores "ideas intelligible speech. He describes his response: related to disability in all forms of cultural "What kind of life could this guy have? representation throughout history," but it Maybe the most merciful thing to do would also examines "the policies and practices of be to put him out of his misery." Ten years all societies to understand the social, rather later [after Brock got to know Campbell than physical and psychological, determi- well], that response still shocks Mr. Brock. "Where does such prejudice come from?" he nants" of disability as experience: asks himself.³⁰ Disability Studies both emanated from "A slashingly dark humor,"31 one of the and supports the Disability Rights characteristic qualities of disability art, is Movement, which advocated for civil illustrated by Billy Golfus's view of the rights and self-determination. The focus shifts the emphasis away from disability rights movement in his incisively a prevention/treatment/remediation witty film, When Billy Broke His Head, and by paradigm, to a social/cultural/political Lynn Manning's poem, "The Magic Wand," paradigm. This shift does not signify a a sardonic comparison of two stereotypes- IDENTITY AND CULTURE 207 one based on race, the other on disability. high professional standards, years from now In this poem, the white cane belonging to mainstream dance companies may include a blind man, who happens to be African dancers with disabilities." American, becomes the catalyst for a sudden A member of the Council of Actor's Eq- transformation: uity since June 1990 and chair of its disabil- ity committee, Lunn has actively worked to Quick-change artist extraordinaire, increase access to theaters for all people with I whip out my folded cane and change from black man to blind man disabilities as well as to foster employment with a flick of my wrist. for actors with all kinds of impairments. It is a profound metamorphosis- Lunn declares, "If Actor's Equity supports From God-gifted wizard of roundball nontraditional casting to encourage em- dominating backboards across America, ploying women and ethnic minorities, peo- To God-gifted idiot savant pounding out chart-busters on a cockeyed ple with disabilities also must be included. whim; Of course that means accessible audition From sociopathic gangbanger with death for spaces as well as all the required accom- eyes modations, and all these assumptions are to all-seeing soul with saintly spirit; accepted across the board now by all the From rape driven misogynist to poor motherless child; performance unions." From welfare-rich pimp Like Kitty Lunn, Dana Tozer-who had to disability-rich gimp; been "a stand-up dancer" for eighteen years And from "white man's burden" before she broke her back in an automobile to every man's burden. accident-feared the dancing chapter of her life was closed. 34 Nonetheless, Tozer is now It is always a profound metamorphosis. Whether from cursed by man to cursed by a wheelchair-dancing member of the Cleve- God; land Ballet Dancing Wheels, a company or from scripture-condemned to God- "creating a new vocabulary of dance" by ordained; featuring both "stand-up" and "sit-down" my final form is never of my choosing; performers dancing together. Company di- I only wield the wand; You are the magician.32 rector Mary Verdi-Fletcher, born with spina bifida, is challenging more than commonly- Because of a spinal cord injury, a conse- held assumptions about aesthetics. Verdi- quence of slipping on ice, Kitty Lunn be- Fletcher describes people's response to the came a wheelchair user after living as a company's work: "People have said, 'I totally nondisabled person for thirty-six years and changed my mind about my perceptions working as an actor and dancer.33 A balle- of disability and of dance. Next time I see rina since she was eight years old, Lunn not a person rolling down the street in their only teaches dance from her wheelchair to wheelchair, I'm not going to say, that poor children with disabilities, but also founded guy or that poor girl. I'm going to say, I her own dance company combining dis- wonder if they're a dancer, or I wonder if abled and nondisabled dancers. She consid- they're a lawyer or a doctor." ers this connection of wheelchair dancing to traditional dancing a form of inclusion: "If we pursue this as professionals, if we Changing Perceptions and the Media set the standards like the African-American dancers who wanted to do classical ballet Besides playing a critical role in the passage instead of modern dance, if we maintain of major legislation from 1973 to 1990, the 208 CHAPTER TWELVE disability rights movement "has brought to- well served by Justin Dart's relationship gether people from all stations and back- to three presidents: Reagan, Bush, and grounds who share a common experience Clinton. When President Bush signed the and a common interest that relate to dis- ADA, Justin Dart was on one side of the ability, and inspired them to work for them- president and Evan Kemp, another well- selves and others," Lex Frieden points out. 35 connected disability rights advocate, was on "Because of the movement, there's been an the other. enormous amount of progress," observes "One effect of having some access to in- Eunice Fiorito, a pivotal force in the struggle siders in government has been the increas- for disability rights. 36 She adds: ingly sophisticated approach to the media that the disability community has been ex- Many people with disabilities feel good hibiting in the late 1990s," Scheer adds. "Lit- about themselves now, and that has triggered their activities in the community, where igating cases and lobbying elected officials they have been doing things along with were the traditional techniques that the nondisabled people. The effect has been community used in the past. But now these not only much more consciousness-raising techniques are used in combination with about disability issues among people with establishing connections with television, ra- disabilities themselves, but also among dio, and newspaper reporters and educating nondisabled people. And in turn that has them." Scheer notes that "the language in caused everyone to feel an unprecedented degree of comfort when talking about the news accounts and editorials, although disability. far from perfect, is much improved; for ex- ample, 'wheelchair user' is finally beginning Susan Scheer, former deputy director of to replace 'wheelchair bound.' Also, stories the Mayor's Office for People with Disabil- have more balance, and the result is that the ities, indicates that the class of educated public is beginning to understand disability professionals with disabilities spawned by issues." the movement are achieving influential po- James Weisman, counsel for Eastern Par- sitions: "They're becoming lawyers, judges, alyzed Veterans Association, is scathingly and doctors; they're entering the academy critical of the editorial policy of the New and politics. They are changing, and they York Times regarding issues affecting peo- will continue to change people's attitudes ple with disabilities: "But it is the Times towards disability, professionally and so- which has opposed accessible transporta- cially."37 When Edward Roberts became di- tion, and the Times which opposed amend- rector of the California State Department of ing the building code to mandate access in Rehabilitation in 1975, he was an anomaly; new construction. And the Times opposed Judith E. Heumann's appointment as as- the Americans with Disabilities Act. If a sistant secretary of the Office of Special loophole can be found, or the law changed, Education and Rehabilitation Services at believes the New York Times, people with the U.S. Department of Education, though disabilities can be excluded without moral very meaningful to the disability commu- consequence." Ironically, Weisman points nity, was no surprise. Moreover, Heumann's out, "When the New York Times opposed the role in the Clinton administration demon- Americans with Disabilities Act, Republican strates how some former disability activists Senator Jesse Helms of North Carolina, an have moved from outside the power struc- outspoken opponent of civil rights laws, ture to inside the corridors of power. Also, told Congress that even 'this liberal New the disability rights movement has been York newspaper' opposed the ADA." IDENTITY AND CULTURE 209 To support his characterization of the militant attitude among many of the dis- newspaper, Weisman offers examples of New abled. "43 The second article, "Architecture York Times editorials from November 1979 in the Age of Accessibility," pointed out to May 1991. Responding to Section 504 that "it [accessibility] is reshaping the entire of the Rehabilitation Act of 1973, one ed- built environment. And it is defining the itorial stated: "The costs of rendering the architecture of the 1990s as much as any handicapped 'equal' have threatened to be- stylistic impulse."44 come especially acute in publicly financed Without ignoring arguments against the transportation."³ Over four years later, an- accessibility laws, the article presented the other editorial reacted to a court injunction reasons for the new architectural standards: concerning subway station reconstruction: "Advocates of barrier-free architecture are "The first object of a wise but concerned pursuing the even more ambitious goal of policy cannot be to make people with seri- what they call universally accessible build- ous disabilities move as if they did not have ings; comfortable, usable and safe for any- them. "40 More than five and a half years after one whose physical capabilities differ from this editorial, another editorial expressed those of an able-bodied, average-sized adult. skepticism about the social value of the As baby boomers go gray, the thinking goes, Americans with Disabilities Act: "With sur- there will be more need than ever for en- prisingly narrow public scrutiny, Congress vironments that are easy to get around." is moving swiftly to extend broad civil rights Appearing about ten months later, a New protection to the nation's 40 million dis- York Times front page article, "New Needs abled citizens. The sentiment is laudable for Retirement Complexes' Oldest," demon- But the legislation is vague costs could strated how the meaning of accessibility has be monumental Predictions about the become painfully clear to retirees who, in bill's projected benefits are obviously spec- their eighties, can no longer negotiate the ulative."⁴¹ And most surprisingly, less than one flight of steps to their Florida condo- two years later, an editorial attacked the miniums that they scarcely noticed when concept of wheelchair accessibility: "Unfor- they were in their sixties.⁴ tunately federal law requires newly con- In "Disrupting Sales at Greyhound: Dis- structed public facilities to be accessible to abled Protest Bus Access," the New York the handicapped."⁴² Times offered an evenhanded account of As Scheer states, "By 1997 the approach how disability advocates-mostly wheel- of the New York Times, as well as other news- chair and scooter users-demonstrated papers, to disability issues showed signs of against the inaccessibility of the over-the- change. The Times gave increased promi- road buses of the nation's largest interstate nence and serious treatment to the dis- bus company.46 Another example of a de- ability community." A sample of newspa- tailed and sympathetic report of a disabil- per articles appearing since 1997 supports ity issue-by a newspaper not known for Scheer's observation. The June I997 Sunday its support of the disability rights move- New York Times lead articles in the "Week ment, the Wall Street Journal-was evident in in Review" and the "Real Estate" sections "The Vision Thing: Mr. Magoo Watches U.S. dealt thoughtfully with concerns important Cultural History and Struggles to Adapt." to the disability community. Although the This article traced the background of this first of these articles, "Disability Culture," "comic" figure, revealing its inappropri- tended to sensationalize the subject, the ateness as a representation of the expe- author made an effort to explain the "new rience of blindness. Although the Handi- 210 CHAPTER TWELVE capped Adults Association protest in late (not Ted) Turner the night before President I997 against traffic hazards near a busy Bush signed the ADA. "I happened to be shopping center paralyzed Bronx rush-hour there," Frieden remembers, "when Turner traffic, the New York Daily News gave an called the Washington Bureau of CNN and almost favorable description of the demon- said the ADA signing ceremony should be stration.⁴⁸ covered live." Frieden continues: Later in the same year, "Dateline NBC," featuring journalist John Hockenberry, Since the ceremony was scheduled for IO a.m., honestly portrayed examples of illegal em- the Atlanta office argued that they could not ployment and housing discrimination fre- preempt their IO a.m. World News for what seemed to them an insignificant law. But the quently experienced by people with visible Washington staff insisted that this was the disabilities. Still, Hockenberry concluded most important legislation since the 1964 civil the program in a celebratory spirit, demon- rights law, and CNN would be negligent if it strating the freedom that he enjoys as a didn't show the world this news event. Atlanta wheelchair user on the Brooklyn Bridge finally resolved themselves to presenting the accessible walkway-an accommodation se- signing, and millions of people around the cured by disability activism. 50 "Technolo- world saw and heard the President say about the ADA, "Let the shameful wall of exclusion gies That Enable the Disabled," a lengthy come tumbling down." front-page article in the "Money and Busi- ness" section of the New York Times, pre- The second most important event, Frieden sented with clarity and specificity illustra- explains, happened the day after the Sen- tions of significant contributions to society ate's final passage of the law: "The ADA that people with very severe disabilities are was the headline in the New York Times, the making because of technologies that allow Washington Post, and every other major Amer- them to express their considerable talents.⁵¹ ican newspaper. That was the first time that By 1999, the New York Times featured a millions of people were exposed to disability front-page article acknowledging the rights as the number one story." "Power of the Disabled" as a political force Alongside the mainstream media, in with regard to two seminal issues. 52 The which twenty-two journalists write regular first concerned the unreasonable require- columns on disability issues, a disability me- ment that many people with disabilities dia network has evolved so that by 2000, an choose to be either workers or beneficia- estimated three thousand to thirty-five hun- ries. The second dealt with "the highly dred newsletters, two hundred magazines, unusual turnabout"-a product of effec- and fifty to sixty newspapers were regularly tive disability activism-that resulted in published.54 Although most of these publi- nineteen of twenty-six states withdrawing cations are devoted to a particular organi- from a U.S. Supreme Court brief support- zation or disability, a few-covering cross- ing institutionalization of many people disability concerns-are broad-based, such with disabilities. as New York Able newspaper, and Mainstream Lex Frieden emphasizes what he consid- and We magazines, as well as the politically ered the two most important media events activist Ragged Edge and Mouth magazines.⁵⁵ related to the disability rights movement Given the increased number of people with and "maybe the most important aspect of disabilities appearing in advertisements, as the ADA since laws are as much percep- well as in television and film, the emergence tion as reality." First, he notes the de- of glossy magazines, such as We, targeted cision made by CNN News president Ed to upper-income consumers with disabili- IDENTITY AND CULTURE 2II ties is not surprising. "We, a magazine that cerned that they rarely get the opportunity calls itself 'a lifestyle magazine for people to speak for themselves about their issues in with disabilities,' has made the advertis- the mainstream media. "Can you imagine ing department at the General Motors Cor- the broadcast of a serious panel discussion poration take notice." A General Motors on race relations in the United States with- spokesperson said, "We're doing a lot of out a person of color being present or a dis- niche marketing to people with disabilities, cussion of gender discrimination without and this publication is reaching them in a a woman being present?" asks Anne Emer- totally different way than they've ever been man, former director of the New York City reached. It's more upscale." In addition, Office of People with Disabilities. "Our approximately forty radio programs and issues are always being discussed by people thirty-eight to forty television programs are who are experts about us-politicians, pol- broadcast throughout the nation. While icymakers, doctors, social workers-but not most of these are local broadcasts, both us. It's as if they thought, what do we know Greg Smith's "On a Roll" and Bob Enteen's about ourselves? With all the enlightened "Living Without Limits" are nationally syn- thinking about disability, there's still that dicated radio programs.⁵⁷ residue of paternalism." Emerman adds, Between 1995 and 2000, the rapid growth "Sometimes disability advocates say, 'Well in dial-in services, making approximately we're getting visibility in ads, and some- sixty mainstream newspapers-including times even an actor with a disability appears the New York Times, USA Today and the in a show.' That's good, but it's not the same Chicago Tribune-available to blind people as speaking for yourself in a serious public by means of computer and telephone, has forum, like other people do, about the hard been "startling," declares Charles Winston, issues that affect not only your quality of founder and director in 1990 of the Na- life but maybe even your survival." tional Telability Media Center. A nonprofit Eunice Fiorito, first president of the research organization created to promote board of the American Coalition of Citizens the growth and development of mass media with Disabilities, asserts, "What's missing is for people with disabilities, the center seeks a strong unified public voice on disability to identify the media that serves people with issues, the kind of voice that can only em- disabilities and disseminate this informa- anate from a cross-disability national coali- tion in all fifty states. Winston, who became tion that speaks for the nation's fifty-four blind while working in journalism and pub- million people with disabilities. That's what lic relations, recognized the disability com- the American Coalition of Citizens with munity's need for a clearinghouse to pro- Disabilities once did, and we need an orga- vide a resource base for the increasing num- nization like that again."⁵⁹ "What's more," ber of disability publications and broad- Fiorito continues, "people with disabilities casts emerging throughout the country. need to know their rights. We need training sessions on the ADA and on the IDEA, like the ones we had on Section 504, because Assessment of the Movement if we don't monitor compliance, nobody will. Eventually, we'll get enforcement with Although welcoming the rise in newsletters, penalties for noncompliance, but that will newspapers, magazines, radio and television take another generation." Fiorito was refer- broadcasts, and internet sites in the disabil- ring to the fact that although the ADA has ity media, many disability advocates are con- clear-cut effective dates for its various pro- 212 CHAPTER TWELVE visions, there are no inspectors that check abled people in the workforce.63 "We won't for ADA compliance. Both the ADA and the see a huge shift in employment statistics IDEA are complaint-driven, which means for the disability population," Bristo adds, that enforcement most often occurs when "until we can assure that the telecommu- individuals or organizations either threaten nication systems that businesses use are or actually file complaints or lawsuits. Legal developed in such a way that they don't fees are available for successful complaints cut out people with disabilities." Bristo is and lawsuits, but there are no sanctions for suggesting that these systems would have noncompliance. to be developed or altered, at reasonable Although many disability advocates com- costs, to be accessible to people with var- plain about the lack of ADA compliance, ious disabilities, such as sensory or mo- the Dole Foundation's Paul Hearne uses tor impairments. a wide lens to examine the ADA: "Is the In her capacity as NCD chairperson, ADA working?" he asks.60 "Have we gotten Bristo describes herself as "a link between rid of racism yet because of the 1964 Civil the disability grass roots and Washington." Rights Act or sexism because women were Yet she credits "the people in the savvy dis- added to the law in 1972? Since the ADA ability community with breathing life into became effective in 1992, it's preposterous the ADA with their activism." Fostering co- to assume that all people with disabilities hesion in the community, she encourages should have jobs by now, to which they "passing the passion on to the next gener- arrive in their accessible vehicles." Hearne ation and to new groups yet untouched by differentiates between the "easier issues," the progress we have achieved." Despite the with which the disability community has setbacks that Bristo anticipates, she main- achieved some success-transportation and tains that "we of the disability community accessibility-as opposed to the "harder is- have set in motion something that can't be sues," which present formidable challenges stopped." for the future-employment, education, per- The energy and commitment is evident sonal assistance services, and health care, as "in the faces of the young and in the world's well as institutionalization of and experi- response," she observes: mentation on people with disabilities.⁶ "Harder than passing the ADA," asserts At the NCD, I get calls many times a month from other governments or disability leaders Marca Bristo, chairperson of the National in other countries for guidance around the Council on Disability since May 1994, "is the disability rights agenda, the law, and other struggle to take the promise of the ADA, programmatic issues. And this gives me my and the values embedded in that law, and greatest hope-the ripple effect, the still push them across public policy. We have untapped impact on the whole world. When I the daunting challenge to look at all of our travel to other countries, even though I can't systems and to change them."62 To illus- speak the language, we can communicate because we speak the same language when it trate, Bristo refers to the necessity for "an comes to disability. overarching national policy on employment for people with disabilities, a new way of Bristo acknowledges, however, the for- thinking about the issue and committing to midable task of coping with disability dis- it, like the culture shift on smoking." The crimination. To begin to deal with this ob- goal, for Bristo, is to make the percentage stacle, Bristo indicates that "we have to erase of employed working-age Americans with some of those very practical barriers for disabilities comparable to that of nondis- people with disabilities who want to work, IDENTITY AND CULTURE 213 as well as for their potential employers." Independent living centers are not expanding Bristo's concern stems from the way the enough for the people who need to be served. American health care system is designed. Annually, less than $100 million goes into People with disabilities realize that the in- the independent living centers that keep come they earn from their jobs may jeop- people productive at all stages of their lives, and one and a half billion dollars is spent ardize their necessary health care benefits for rehabilitation, which serves fewer people such as, for example, their personal atten- and provides fewer jobs. Also, ethnic and dant services or essential medication. Even racial minorities and young people are not though increases may often be unjustifiable, adequately involved in disability advocacy. employers fear that their health insurance It's our job in the movement to attract this costs will rise precipitously if they hire peo- underrepresented population. ple with disabilities. Scheer suggests that young people are not Gay Men's Health Crisis (GMHC) coun- attracted to the movement in the 1990s as sel Susan Dooha refers to people with dis- they had been in the 1970S because-"like abilities as the "canaries in the mine" in the civil rights movement and the women's regard to the 1990s experiment with health movement-the disability rights movement care financing and delivery.6⁴ Compared to seems to be a victim of its own success."6 the needs of the general public, the med- On the whole, mainstreaming has increased ical requirements of people with disabil- the participation of people with disabilities ities tend to be more specialized, imme- in the wider society, but it has diminished diate, and acute. Not only do they fre- the sense of community, the bonding, be- quently require a network to provide for tween members of the disability popula- their health care needs, but their prob- tion, Scheer observes. "They're willing to lems are often more varied and extensive fight for themselves-get note-takers, access than those of nondisabled people. Since to libraries-but they're not as involved in the weaknesses of a managed care system the movement as people were in the 1970s." in providing health services become evi- Also, she comments on how young people dent first in the disability population, many with disabilities are enjoying the benefits of people with disabilities face changes in the accessibility that came out of the struggle delivery and financing of health care with of the generation that preceded them: trepidation. Dooha believes, however, that the regulations barring discrimination in They take these benefits for granted; they the ADA ultimately may ensure that peo- think they were always there, and they'll ple with disabilities receive access to ap- always be there. They don't realize that propriate health care, including specialists, if they're not vigilant, they can lose what they've got. Clearly, the disability rights durable medical equipment, and medica- movement is not as visible, not as entrenched, tions, as well as long-term care and personal as other civil rights movements. So, as a assistance services.⁶ fringe movement, it's more vulnerable than Still, Frieden-pointing to the health care the other movements. For example, if in flush crisis that will erupt in about 2005 with the times, like the 1990S, the expenditure of money aging of the baby boomers-asks, "Where can be used as an excuse against accessibility, is the infrastructure they need for medical special education, and health care, then what will happen in bad economic times? services, for assisted living in their own homes and communities?"⁶⁶⁶ Frieden also is Disability advocate Frank Bowe offers concerned about the future of the disability one reason that the legacy of the disabil- rights movement: ity rights movement-more than other civil 214 CHAPTER TWELVE rights movements-is difficult to transfer disability community will have to become from one generation to the next. 68 Since increasingly political, consistently involved parents of children with disabilities usually in party and elective politics:70 "We're less are nondisabled, these children must, them- political than other minority groups. We're selves, confront the stigma of disability and mainly a middle-class movement, so we're then emerge with self-esteem sufficient to not the rainbow we should be. And the allow them to discover and carry on the fact that we're not representing a diversity tradition of disability activism. "The process is problematic because it means that some of moving toward assertiveness and inde- people are disenfranchised, and that limits pendence, then, must begin anew with each our political clout." In fact, she asserts that child [with a disability]." the disability rights movement has to be an Judith E. Heumann proposes ways for integral part of the overall movement for the disability community to face the social change: and political realities of disability as well as counter the charitable model of cure: We have to appreciate what poverty means in "We have to demystify who we are so peo- this country because poverty is a significant cause of disability, and poverty adversely ple understand that disability is a natural affects disability.71 It is critically important part of life. The barriers to integration al- that we look to our other civil rights partners low people to think disability is an unmit- and the larger economic picture. Then we igated tragedy. But if the proper policies can become a bigger player, and a diversified were implemented, we could make contri- movement will naturally evolve. Though the butions that we're not able to make now be- gains of the disability rights movement over cause people assume we're not able to make the last thirty years have been impressive, they are relatively few in relation to what we yet them."69 Calling for an increasingly strong, have to do. honest, and forthright dialogue with the American people, Heumann urges the dis- "After all the accomplishments of the dis- ability community to make the effort to ability rights movement," Anne Emerman understand the fears of the wider society, notes, "if in the late 1990s, the director of the and "put a face to those concerns." Center for Independence of the Disabled in The movement has not been as effective New York, Marilyn Saviola, can say, 'All the as it could be, Heumann believes, because rights and all the programs we've fought disability advocates have not been strategic for-the ones that keep people like me out of enough: institutions-are back on the table,"2 then I have grave concerns for the future."3 Emer- We need to be more knowledgeable and man raises the questions pivotal for the fu- analytical about what exists in other countries for people with disabilities-like on-the-job ture of the disability rights movement: accommodations with government supports, How do we educate young people with modifications of apartments and homes, and disabilities-like young people from racial appropriate health care. Clearly, health care and ethnic minorities-to learn about and is a disability issue for everyone because if embrace their heritage? How do we inspire you don't get the right coverage, a medical them to translate that insight into more than condition can become a disabling one. And sustaining-but even expanding-the hard- what are we doing to educate the baby fought-for achievements of the disability boomers, because they are us tomorrow? rights movement? How do we encourage them to forge stronger connections to like- In order to be seen as a constituency minded people from other communities and to be listened to, Heumann continues, the other movements? IDENTITY AND CULTURE 215 And how do we get nondisabled people movement has been referred to as a "stealth to understand that ours is truly a civil movement." rights struggle, to realize that policies Perhaps one reason that even many po- that serve people with disabilities tend to benefit everybody, politically, socially, litically sophisticated people are unaware of and economically? How do we explain to disability activism is the lack of a charis- nondisabled people that they are not in matic figure: no Martin Luther King Jr. nor competition for programs and funding Malcolm X, no Betty Frieden nor Gloria with the disability population, but rather Steinem, to epitomize the movement. Cer- people with disabilities are their friends, their tainly the movement has worked toward families, and in all likelihood, at some point bringing the issues of people with disabil- in their lives, themselves? ities before the public, for like Ralph El- lison's "Invisible Man," many members of the disability population, historically, were A Stealth Movement ignored, isolated, removed from the com- munity. Sherry Lampert, a highly intelli- "The disability rights movement is at the gent woman with cerebral palsy, describes forefront of the human rights movement her feelings when her parents-who experi- because it's one of the most serious-one enced her disability as their shame"-tried of the toughest nuts to crack," observes to hide her by placing her in a hospital wheelchair innovator Ralf Hotchkiss.⁷ Why ward for children who were developmentally is this movement different from other rights delayed: "I felt like I wasn't part of the hu- movements? The movement comprises not man race."78 only the largest minority-fifty-four million Yet disability, more than other move- Americans with disabilities-but also im- ments, eludes embodiment in one figure. pacts on their families and friends, who usu- The reason is the inclusiveness of the move- ally are nondisabled. People with disabilities ment, and its relevance to such a wide and is the only protected class that anyone can varied spectrum of the population. And enter at any time through birth, accident, herein lies the movement's strength-its illness, or advanced age. Most individuals, great and ever-increasing numbers-as well at some point in their lives, will have a as its weakness. Shortly before her death in disability. With the aging of the American June 1997, Betty Shabazz reminded a group population and the advancement of medi- of students in Newark, New Jersey, that her cine and technology, by 1994-1995 a fifth of husband, Malcolm X, often said that if you the nation's population had some form of see a picture of the world and your face isn't disability. The year 2020 will mark almost in it, your job is to put your face there. a revolution in medicine; chronic disease She might have added, is there one face will predominate rather than infectious dis- with which a quadriplegic wheelchair user, ease.75 Dr. Joanne Lynn, director of George a blind person, a deaf person, a frail elderly Washington University's Center to Improve person, a person with AIDS, a person with a Care of the Dying, emphasizes that "most psychiatric disability, a person with diabetes women have eight years of disability before or cancer, a veteran exposed to nerve gas, they die; most men, five or six."76 However, and a nondisabled parent of a child with unlike other civil rights movements-the a severe disability can identify? Disability African-American civil rights movement, activism has many faces; can one face be the women's movement, the gay and lesbian emblematic of all the faces of the disability rights movement-only the disability rights rights movement? Notes Preface I. Elisabeth Young-Bruehl, The Anatomy of Prejudice (Cambridge, Mass.: Harvard University Press, 1996). 2. Paul Robinson in "Intolerance," New York Times, Sunday, May 19, 1996, sec. 7, p. 41, reviewed Young- Bruehl's The Anatomy of Prejudice. Emphasis added. In their excellent history of the gay rights movement in America, Out For Good (New York: Simon & Schuster, 1999), authors Dudley Clendenin and Adam Nagomey refer to the movement as "the last great struggle for equal rights in American history to this point" (p. 13). AIDS is prominently discussed in their book, but there is no mention of the Americans with Disabilities Act or other disability legislation relevant to people with HIV or AIDS. The authors link the gay rights movement to other struggles for equal rights-by African Americans, women, Native Americans-but not to the disability community. Although they call the gay and lesbian population an "invisible people," equally invisible are people with disabilities whose goals are much the same. 3. R. C. Smith, A Case About Amy (Philadelphia: Temple University Press, 1996). See Hendrick Hudson Central School District v. Rowley, IO2 S.Ct. 3034 (1982). 4. R. C. Smith, "An Audience for Amy," Ragged Edge, May/June 1998, 31-32. 5. In his catalogue of isms, comparable to racism, Andrew Hacker, professor of political science at Queens College of the City University of New York, includes handicapism. See Hacker, Two Nations: Black and White, Separate, Hostile, Unequal (New York: Scribners, 1992), 20. 6. Paul Longmore's presentation, Disability Studies Colloquium, New York City Hunter College School of Social Work, December 5, 1997. Longmore refers to With a Song in My Heart as an "inspirational" film, Nightmare on Elm Street as a "horror" film, and My Left Foot as a "realistic" film about a person with a disability, reflecting Christy Brown's "fierce lifelong battle against condescension and contempt." See also Martin F. Norden, The Cinema of Isolation: The History of Physical Disability in the Movies (New Jersey: Rutgers University Press, 1994). 7. Peter Hall, "Inventing the Poster Child," the first part of a four-part program, "Beyond Affliction: The Disability History Project," National Public Radio. The program was aired at different times in various parts of the country during the week of May 4, 1998. 8. John M. McNeil, "Current Population Reports: Americans with Disabilities 1994-95," published by U.S. Department of Commerce, Census Bureau, August 1997, I-2. Unless otherwise indicated, statistical data is from this source. 9. "Follow-up to 1994 Research," Ragged Edge, September/October 1998, 5-6. Reference to the 1998 Harris Poll by Louis Harris and Associates for the National Organization on Disability from this source. IO. The three 1999 employment cases are Sutton v. United Airlines, Inc., II9 S.Ct. 2139; Murphy v. United Parcel Service, Inc., II9 S.Ct. 2133, and Albertson's Inc. v. Kirkingburg, II9 S.Ct. 2162. The U.S. Court of Appeals 218 NOTES TO PREFACE in the Garrett case held for the plaintiff, 193 F3d 1214 (rith Cir 1999), but the State of Alabama has appealed to the Supreme Court. The Supreme Court's decision in the Kimel case can be found in I20 S.Ct. 631 (2000). In City of Boerne v. Flores, 52I U.S. 507 (1997), the Supreme Court held that under the Fourteenth Amendment, Congress may enact civil rights legislation only if the statute is designed to remedy a history of unconstitutional conduct and if the remedy is proportionate to the history of such violations. Prominent disability rights attorney Stephen Gold fears that the new federalism evident in the Kimel decision and other Supreme Court rulings does not bode well for disability rights advocates. References to threats to Title II of the ADA from conversations with John Gresham, senior litigation counsel at New York Lawyers for the Public Interest, May 12, 2000, and Stephen Gold, April 28, 2000. II. Examples of "reasonable accommodations" include ramps for wheelchair users, computer voice synthesizers for blind people, and assistive listening devices for those who are hard of hearing. Because they are not prohibitively expensive, most "reasonable accommodations" are not difficult to provide. I2. Robert Pear, "Senate Approves Health Care for Disabled," New York Times, June 17, 1999, A28. References to Senator Edward M. Kennedy from this source. On October 19, 1999, the House passed the Work Incentives Improvement Act by an overwhelming vote (Justice For All, email [email protected], October 20, 1999). On December 17, 1999, WIIA (PL 106-170) was signed by President Clinton. Chapter One I. Judith E. Heumann, "Statement," Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: A Consultation Sponsored by the United States Commission on Civil Rights, May 13-14, 1980), 231. When Heumann-winner in 1993 of the first Betts Award for outstanding contribution to people with disabilities-made this statement in 1980, she was the deputy director of the Berkeley, California, Center for Independent Living. References to the postage stamp, "Hope for the Crippled," from this source. 2. Hugh Gregory Gallagher, FDR's Splendid Deception, rev. ed. (Arlington, Va.: Vandamere Press, 1994), 96. 3. Gallagher, FDR's Splendid Deception, 27. 4. Doris Kearns Goodwin, No Ordinary Time (New York: Simon & Schuster, 1994), 16-17. 5. Maureen Dowd, "Not-So-Splendid Deception," New York Times, May 2, 1996, A2. 6. Karl E. Meyer, "Editorial Notebook," New York Times, May 12, 1996, sec. 4, P. 13. 7. "Letters to the Editor," New York Times, May 16, 1996, 24. 8. Dowd, "Not-So-Splendid Deception," A2. At the April 19, 1998, New York City 504 Democratic Club dinner, Christopher Roosevelt, grandson of FDR, stated that the National Organization on Disability had pledged to raise private funds to add a statue of FDR in his wheelchair to the national memorial. 9. Though sympathetic to a historically accurate depiction of Roosevelt in the memorial, George F. Will exaggerates the importance of political correctness in the controversy. "The Only Thing To Fear: Political Incorrectness," New York Post, May 9, 1996, 33- IO. John Gliedman and William Roth, The Unexpected Minority: Handicapped Children in America (New York: Harcourt Brace Jovanovich, 1980). II. Although his March I, 1945, speech President Roosevelt made reference to his braces, "about ten pounds of steel around the bottom of my legs," the radio audience was hearing about, not seeing, evidence of his disability (Goodwin, No Ordinary Time, 586). The fatigue FDR was experiencing near the end of his life would be recognized by 1984 as post-polio syndrome, a continuous weakening of the muscles originally affected by the polio virus. He died on April 12, 1945. 12. Goodwin, No Ordinary Time, 533. 13. Goodwin, No Ordinary Time, 532. 14. Gallagher, FDR's Splendid Deception, 27. I5. In the Jim Crow South, African Americans who contracted polio were turned away from hospitals and facilities such as Warm Springs in Georgia. Although too many were inadequately treated, some were sent to Tuskeegee Infantile Paralysis Institute in Alabama (A Paralyzing Fear: The Story of Polio in America, NOTES TO CHAPTER ONE 219 the Center for History in the Media at George Washington University, Paul Wagner Productions, a Nina Gilden Seavey film). 16. Gallagher, FDR's Splendid Deception, 57. Winner of the 1996 Betts Award, Gallagher played a pivotal role in the development and passage of the federal Architectural Barriers Act of 1968. 17. Gallagher, FDR's Splendid Deception, 41. 18. Gallagher, FDR's Splendid Deception, 4I-42, 154. References to Fred Botts from this source. 19. Mary Johnson quoted Longmore in "The Bargain," The Disability Rag (September-October 1989), 6. In 1961, Eleanor Roosevelt told Judith Heumann and her mother, Ilse, that if FDR were as young as Judith when he contracted polio, he would have dealt with it better than he did (interview with Ilse Heumann, June 22, 1996). 20. Goodwin, No Ordinary Time, 586-87. 2I. Martha Fay, "Lungs of Iron," review of Katherine Black's In the Shadow of Polio, appeared in the New York Times, Sunday, June 2, 1996, sec. 7, p. 19. 22. As a 1996 presidential candidate with a clear physical impairment resulting from World War II wounds, Bob Dole-whose disability is much less severe than Roosevelt's was-appeared ambivalent regarding disability issues. Although he established the Dole Foundation (a nonprofit organization promoting employment for people with disabilities), Dole when campaigning for the presidency, seemed unsure how to position himself as a person with a disability. 23. Unless otherwise indicated, references to the League of the Physically Handicapped from interview with Florence Haskell, December 3, 1995, and Herman Joseph's interviews with Sylvia Bassoff, December 7, 1985, and Haskell, March 29, 1986. 24. "Crippled Pickets "Torture' Harris," New York Times, June 21, 1935, 21. 25. Frances Lide, "Girl Leader of Cripples Asks Plan to End "Discrimination," Washington Star, May II, 1936. 26. References to slogan from the film A Paralyzing Fear. 27. Unless otherwise indicated, references to the Birthday Balls, the National Foundation for Infantile Paralysis, and the March of Dimes from Gallagher, FDR's Splendid Deception, 147-51. 28. Goodwin, No Ordinary Time, 575- 29. Stated in the film A Paralyzing Fear. References to Basil O'Connor from this source. 30. References to Eddie Cantor from the film A Paralyzing Fear. 3I. Other means were used to raise funds to find a cure for polio. For example, in movie theaters, films would be stopped in the middle to allow collection cans for the March of Dimes to be passed up and down the aisles; the patrons did not seem to mind. Shown in the film A Paralyzing Fear. 32. The oral Sabin vaccine replaced the injected Salk vaccine throughout the world because not only is the Sabin vaccine cheaper and easier to administer than the injected vaccine, but with the oral vaccine the recipient's immunity also is transmittable even to those who have not swallowed it since the virus is alive. A small percentage of those receiving the oral vaccine, however, contract polio, so the federal Centers for Disease Control and Prevention recommended that beginning January I, 2000, all four doses of the vaccine should be the injected inactivated form of the virus. Information on Sabin and Salk vaccines from "U.S. Panel Proposes a Change in Administering Polio Vaccine," New York Times, June 21, 1996, A14; "Morning Edition," National Public Radio, June 16, 1996; and Denise Grady, "Doctors Urge Polio Shots to Replace Oral Vaccine," New York Times, December 7, 1999, A2I. 33. No longer a menace in the United States after the Salk and Sabin vaccines, polio did not disappear from the world. Ironically, because of the nature of the disease, improvement in sanitation-which prevented most other diseases-sometimes brought on polio epidemics as children never acquired the immunity to polio that they would have in a less sterilized environment. Discussed in the film A Paralyzing Fear. 34. Parents did play some role in combating polio; for example, in the Mothers' March on Polio-a campaign waged to raise money for the March of Dimes before Salk's successful polio vaccine-in the evening women went from house to house where lighted porches designated the residents' desire to make a contribution. Shown in the film A Paralyzing Fear. 35. Information concerning United Cerebral Palsy, the Association for the Help of Retarded Children, 220 NOTES TO CHAPTER ONE and Association of Children with Retarded Mental Development from interview with Rachelle Grossman, August 20, 1997, former assistant director of the Department of Family and Clinical Services at AHRC. 36. "The Overdue Revolution" in "Beyond Affliction: The Disability History Project," National Public Radio, May 1998. The four-part program, "Inventing the Poster Child," "What's Work Got To Do with It," "The Overdue Revolution," and "Tomorrow's Children," was aired at different times in various parts of the country during the week of May 4, 1998. 37. Nora Groce, The U.S. Role in International Disability Activities: A History and a Look Toward the Future (Oakland, Calif.: International Disability Exchanges and Studies Project, 1992), 17-20. Unless otherwise indicated, information on Easter Seal from this source. 38. Interview with Eileen Healy, April II, 1997, former director of the New York City office of Easter Seal. 39. Interview with Eileen Healy, April II, 1997. 40. Gallagher, FDR's Splendid Deception, 146. 41. Leslie Bennetts, "Jerry vs. the Kids," Vanity Fair 56(8) (September 1993): 82. 42. John Hockenberry, Moving Violations: War Zones, Wheelchairs, and Declarations of Independence (New York: Hyperion, 1995), 33. Hockenberry apparently meant MD (muscular dystrophy), not MDA (Muscular Dystrophy Association). 43. Gliedman and Roth, The Unexpected Minority, IO. 44. Frank Bowe, "An Overview Paper on Civil Rights Issues of Handicapped Americans: Public Policy Implications," Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: A Consultation Sponsored by the United States Commission on Civil Rights, May 13-14, 1980), 8-9. 45. Paul K. Longmore, "The Life of Randolph Bourne and the Need for a History of Disabled People," Reviews in American History 13(4) (December 1985): 583-86. References to the life and times of Randolph Bourne, as well as to sterilization and mercy killing for people with disabilities, from this source. 46. Irving Zola is quoted in additional material prepared for the written transcript of "Beyond Affliction: The Disability History Project." 47. Bowe, "Overview Paper," 9. See chapter IO for discussion of veterans and disability. 48. Bowe, "Overview Paper," 9. 49. "What's Work Got To Do with It" in "Beyond Affliction: The Disability History Project." Chapter Two I. Oliver Sacks, Seeing Voices: A Journey into the World of the Deaf (California: University of California Press, 1989; reprint, New York: HarperPerennial, 1990), 8-9. 2. Harlan Lane, When the Mind Hears: A History of the Deaf (New York: Random House, 1984; reprint, New York: Vintage, 1989), 93. 3. As late as July 1997, news sources as sophisticated as the New York Times and National Public Radio referred to deaf people as deaf-mutes without noting how offensive many in the deaf community consider this term-which reflects a lack of awareness of the authentic language of some deaf people, sign language. 4. Lane, When the Mind Hears, III. Reference to Ponce de Leon from this source. 5. Andrew Solomon, "Defiantly Deaf," New York Times magazine, Sunday, August 28, 1994, sec. 6, 38-45, 62, 65-68. 6. Frances A. Koestler, The Unseen Minority: A Social History of Blindness in America (New York: David McKay Company, 1976), 23. 7. Koestler, The Unseen Minority, 18-19, 31-32, 90. Unless otherwise indicated, references to Henry Randolph Latimore and Robert Benjamin Irwin from this source. 8. Sacks, Seeing Voices, 26-27. Unless otherwise indicated, references to the Congress of Milan from this source. 9. John Dewey referred to Horace Mann with these words in "The Challenge of Democracy to Education," The Later Works, 1925-1953, vol. II, ed. Jo Ann Boydston (Carbondale: Southern Illinois University Press, 1991), 182. NOTES TO CHAPTER Two 22I IO. Steven Pinker, The Language Instinct: How the Mind Creates Language (New York: William Morrow and Company, 1994), 237. II. Nora Ellen Groce, Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard (Cambridge: Harvard University Press, 1985). I2. Sacks, Seeing Voices, 32. 13. Pinker, The Language Instinct, 293. 14. Ibid., 18-19. I5. Researchers discovered that deaf children in China and the United States follow the same patterns in learning and using sign language. "Morning Edition," National Public Radio News, January 15, 1998. 16. Carol Padden and Tom Humphries, Deaf in America: Voices from a Culture (Cambridge: Harvard University Press, 1988), 118-19. 17. Lane, When the Mind Hears, 53-54, 63. 18. Ibid., 162, 182-83. I9. Ibid., 199, 222. 20. Ibid., 6. 21. After the blind students of the Columbia Institution were transferred to another school in 1865, the Columbia Institution became known as the Institution for the Deaf and Dumb. The college division, then called the National Deaf-Mute College, was changed to Gallaudet College in 1893 in honor of Thomas Gallaudet, and later became Gallaudet University. See "The History of Gallaudet University," on the university's web site: http://www.depts.gallaudet.edu 22. Lane, When the Mind Hears, 397-99. 23. Sacks, Seeing Voices, 27. 24. "The Overdue Revolution" in "Beyond Affliction: The Disability History Project," National Public Radio, May 1998. The four-part program, "Inventing the Poster Child," "What's Work Got To Do with It," "The Overdue Revolution," and "Tomorrow's Children," was aired at different times in various parts of the country during the week of May 4, 1998. 25. Lane, When the Mind Hears, 394-95. References to the first meeting of the National Convention of Deaf-Mutes from this source. 26. Lane, When the Mind Hears, 404. 27. H-Dirksen L. Bauman, "Beyond Speech and Writing: Recognizing American Sign Language Literature in the MLA," Profession, The Modern Language Association of America, 1997, 174. 28. Sacks, Seeing Voices, 32. 29. Koestler, The Unseen Minority, 95-96. 30. Description of Braille from Hilarie Lynne Luxton, "Factors Affecting Rehabilitation Teachers' Braille Instruction of Adults Who Are Blind and Visually Impaired" (Ed.D. diss., Teachers College, Columbia University, 1993), 15-16. 31. Louis Braille was a student in Valentin Hauy's Parisian school (Koestler, The Unseen Minority, 397- 98). Hauy was one of the three great founding fathers of education of blind people, along with Samuel Gridley Howe and Johann Wilhelm Klein (Koestler, The Unseen Minority, 303). 32. Koestler, The Unseen Minority, 96-98. 33. Ibid., 99-101. 34. Luxton, "Factors," 17-19. 35- According to the 1991-1992 Census, of the almost ten million Americans age fifteen and older who have difficulty reading words and letters even with glasses or contact lenses, approximately eighty- five thousand use Braille and only ten to fifteen thousand use Braille extensively. Statistical information provided by the American Foundation for the Blind. Because school systems used mainstreaming as an excuse to cut costs by reducing the number of Braille teachers, "in the past 30 years, the percentage of blind children learning Braille in the United States has fallen to less than IO percent from about 50 percent," the National Federation of the Blind reported ("70% of Blind Lack Jobs; Computer Mouse Shares the Blame," New York Times, July 3, 1999), AI2. 36. Koestler, The Unseen Minority, 130. References to long-playing records for blind people from this source. 222 NOTES TO CHAPTER Two 37. Koestler, The Unseen Minority, 146. 38. Ibid., 209. Social reformers, such as Samuel Gridley Howe-and Dorothea Dix with whom he worked closely-were finding public funding for institutions that would provide care, education, and employment opportunities for individuals who were considered "mentally unfit," which included children and adults with birth defects, as well as those who were developmentally delayed, epileptic, dyslexic, deaf, autistic, and blind. Information on Howe and Dix from interview with Sandra Marlow, June 23, 1997, former librarian at Fernald State School for People with Mental Retardation, an institution established by Howe in the early 1850s. 39. Winifred Holt Mather, Edith Holt Bloodgood, and Rufus Graves Mather, First Lady of the Lighthouse: A Biography of Winifred Holt Mather (New York: The Lighthouse, The New York Association for the Blind, 1952), IIO. 40. Ibid., 29, 84, 163, 165, 166, 171, 173, 206. 41. Koestler, The Unseen Minority, 315-16. 42. Unless otherwise indicated, information about the guide dog movement in the United States from Koestler, The Unseen Minority, 304-7. Although legally blind, Stephen Kuusisto, author of Planet of the Blind (New York: Dial Press, 1998), spent his childhood and young adulthood "passing" as sighted. Because of the stigma associated with each, the concept of "passing" is relevant to disability as it is to race. 43. Koestler, The Unseen Minority, 315. The story of the white cane movement from this source. 44. About twenty years ago, the passage of a federal law requiring localities, nationally, to permit cars to turn right on a red light, roused William Pickman-from the New York City chapter of the American Council of the Blind-to organize the Committee Against Right on Red (CARR), a citywide coalition representing blind people and others with disabilities, parents of young children, and older people. Consequently, the federal government did not mandate right on red in New York City. 45. Information on the difference between the pencil tip and rolling tip canes from interview with mobility instructor Marilyn Newman, May 2, 1998 and with one of her clients, Keisha Powell, December 8, 1996. Newman is the author of "Mobility Techniques that Affect Safety in Travel for Blind and Visually Impaired People," Journal of Visual Impairment and Blindness, January 1998. According to Newman, in the late 1980s Raymond Alaire, a Canadian, invented the rolling tip cane for his blind daughter. 46. Floyd Matson, Walking Alone and Marching Together (Baltimore, Maryland: National Federation of the Blind, 1990), 27. 47. Ibid., 23. 48. Ibid., 3I-34. Unless otherwise indicated, references to Jacobus tenBroek from this source. 49. Matson, Walking Alone and Marching Together, 87-88. 50. Ibid., 109-10. 5I. Ibid., 100. 52. Ibid., 798. Richard Severo, "Kenneth Jernigan, Advocate For the Blind, Is Dead at 71," New York Times, October 14, 1998, A2I. 53. Matson quoted Jernigan in Walking Alone and Marching Together, 176. Authors' emphasis. 54. Interview with Rami Rabby, October 26, 1996. 55. "How Many More Must Die?" DIA Activist, March 1983, 2. 56. Richard K. Scotch, From Goodwill to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple University Press, 1984), 54-55. References to John Nagle from this source. 57. References to Rami Rabby's lawsuit against the Foreign Service of the State Department from interview with Rabby, October 26, 1996. 58. Although other earlier types of detectable warning strips" frequently were used, by the 1990s most blind people had indicated their preference for truncated domes. 59. References to Karen Luxton Gourgey, Ph.D., Director of the Computer Center for Visually Impaired People at Baruch College, from interview with Gourgey, September 26, 1996. 60. References to Guide Dog Users and Rosemarie McCaffrey from interview with McCaffrey, May 28, 1998. According to McCaffrey, Seeing Eye or Guiding Eye provides guide dogs free of charge to owners at least sixteen years old who take a training program of four weeks with the first dog and three weeks with any succeeding dogs. NOTES TO CHAPTER Two 223 6I. Although Alice Crespo, founder and director of Independent Recreation of the Disabled, has had "very positive experiences" with her two guide dogs, she expressed doubt about getting a third: "I loved my two dogs, Xenta and Sunshine. But when each of them died, I really got depressed. I'm not sure I want to go through that pain again." Interview with Alice Crespo, April II, 1996. 62. Philip K. Howard, The Death of Common Sense: How Law is Suffocating America (New York: Random House, 1994), 152. 63. Padden and Humphries, Deaf in America, 44. 64. Sacks, Seeing Voices, 153. The view that "Deaf" signifies a linguistic minority, not a disability, is the thesis of Harlen Lane's The Mask of Benevolence: Disabling the Deaf Community (San Diego: Dawn Sign Press, 1999). 65. Nadina LaSpina, "They Don't Want To Be Like Us," DIA Activist, June 1996, 15-16. 66. References to Frank Bowe's criticism of Deaf culture from Bowe's letter to the authors, January 3, 1993. Similar to advocates of Deaf culture, NFB expects to benefit from legislation prohibiting disability discrimination while at the same time denying that blindness is a disability. 67. Because of its historical roots, ASL, the sign language of the United States, is closer to the sign language of France than to the sign language of England. 68. Sacks, Seeing Voices, 143. Unless otherwise indicated, references to William Stokoe from this source. Stokoe, who "helped change the way deaf people are educated around the world," died on April 4, 2000 (Eric Nagourney, "William Stokoe Jr., Sign Language Advocate Dies at 80," New York Times, April II, 2000, BIO). 69. Sacks, Seeing Voices, I5I. References to Barbara Kanapell from this source. 70. Padden and Humphries, Deaf in America, 2. 71. Frank Bowe letter to authors, January 3, 1993. 72. Edward Dolnick, "Deafness As Culture," The Atlantic Monthly, September 1993, 38. References to Roslyn Rosen from this source. 73. Dolnick, "Deaf As Culture," 39. 74. Statistics from the 1991-1992 Census provided by the League for the Hard of Hearing in New York City. 75. These three questions were suggested by a letter by Kate Gladstone in New York Able, October 1996, 2 and 13. 76. Sacks, Seeing Voices, 157. 77. Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), 75. 78. Sacks, Seeing Voices, 151. 79. Shapiro, No Pity, 74. 80. Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon & Schuster, 1963), 138. 81. References to sign language and political organizing of black deaf people, minority interpreters for the deaf, and the comments of Celeste Owens from interview with Celeste Owens, September 30, 1996. 82. In order to be certified, interpreters must pass an examination and pay a fee. 83. A subset of interpreters who are not certified acquire the label "qualified" by accomplishing specific tasks. 84. Latino Deaf Advocates and Asian Deaf Advocates are political groups similar to Black Deaf Advocates. 85. References to Marcia Bernstein from interview with Bernstein, January 12, 1997. 86. Interview with Judith Cohen, March 20, 1997, author of Disability Etiquette: Tips on Interacting with People with Disabilities, illustrated by Yvette Silver and published by Eastern Paralyzed Veterans Association, in 1998. 87. Felicia R. Lee, "New York to Teach Deaf in Sign Language, Then English," New York Times, March 5, 1998, B3. Reference to recent instruction in ASL in schools for deaf students from this source. Deaf students were not taught to lip-read or speak; they were taught to lip-read and speak. 88. Bauman, "Beyond Speech and Writing," 175. 224 NOTES TO CHAPTER Two 89. Henry Kisor, What's That Pig Outdoors? A Memoir of Deafness (New York: Penguin Books, 1990), 255-58. As a supplement to sign language, there are those who advocate "cued speech," breaking words into syllables and conveying these words with hand signals and lip-reading. Thus, these advocates argue, the academic achievement of deaf people would improve as they could link visual signs to language as it is spoken and written. See Lynette Holloway, "Among the Deaf: Ubiquitous Sign Language Faces a Challenge," New York Times, June 22, 2000, AI. 90. Lee, "New York to Teach," B3. 9I. Walter Kendrick, "Her Hands Were a Bridge to the World," [Review of Helen Keller: A Life by Dorothy Hermann] New York Times, Sunday, August 30, 1998, sec. 7, p. IO. 92. Helen Keller, The Story of My Life (New York: Doubleday, 1991). 93. Cheryl Marie Wade, "Disability Culture Rap," The Ragged Edge, ed. Barrett Shaw (Louisville: The Advocado Press, 1994), 15-16. Chapter Three I. Interview with Anne Emerman, April 30, 1997. 2. Douglas Martin, "A Victor Fears For the Future," New York Times, April 29, 1997, BI, B6. References to the young adults' ward at Goldwater Memorial Hospital from this source. 3. References to Marilyn Saviola's education and career from interview with Saviola, June 27, 1997. 4. Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge: Cambridge University Press, 1987), 179. 5. Incarceration is a term used by many disability rights activists to describe people who are unnecessarily institutionalized against their will. 6. Frieda Zames, "The Right To Choose," Disabled In Action Advocate, December 1978, I. References to Lyn Thompson from this source. 7. References to the Independent Contractor Home Care System from material provided by Marvin Wasserman, July 7, 1997. 8. To preserve the rights of self-directing home care consumers, Victoria I. and Ira E. Holland and Edward Litcher established an organization in 1977 that developed into the program Concepts of Independence. References to the expansion of Concepts from conversations with Concepts Client Coordinator Carmen Silver, July 6, 1999, and February 7, 2000. 9. Interview with Marvin Wasserman, July 7, 1997. Concepts of Independence is so highly regarded that the son of Sandra Parrino, chair of the National Council on Disability from 1983 to 1993, travels from Westchester to New York City to hire his personal attendants from this innovative program. IO. Ed Shook, "A College Eases Handicaps of 56 Students by Removing Barriers to Active Campus Life," The Kansas City Star, October 4, 1959, IOA. (Material about Kansas State Teachers College provided by Keith Frank, Disabled Students Services Coordinator, Emporia State University, July 25, 1996.) II. Duane F. Hetlinger, "Physically Handicapped College Graduates," Vocational Guidance Quarterly, Winter 1963, 85. 12. References to the University of Illinois at Champaign-Urbana from material provided by the university's Rehabilitation Education Center, April 29, 1996. The 1948 campus at Galesburg was moved to Champaign-Urbana in 1949. 13. The predecessor of Gallaudet College-the Columbia Institution for the Deaf, Dumb, and Blind- was established in 1864 to provide accessibility to higher education for deaf students and blind students. It became limited to deaf students in 1865. 14. Unless otherwise indicated, information about Edward Roberts from conversations with Roberts, May 23, 1994, and July 17, 1994. I5. Jon Oda (Edward Roberts's attendant for three years), "Highlights from Speeches by Ed Roberts" (unpublished manuscript), April 1995, I. Oda manuscript provided by Bruce Alan Kiernan, board member of World Institute on Disability and close personal friend of Roberts. 16. Oda, "Highlights," 2. NOTES TO CHAPTER THREE 225 17. Cheryl Marie Wade, "Disability Culture Rap," The Ragged Edge, ed. Barrett Shaw (Louisville: The Advocado Press, 1994), 17. 18. Douglas Martin, "Disability Culture: Eager to Bite the Hand That Would Feed Them," New York Times, Sunday, June I, 1997, sec. 4, P. I. I9. Oda, "Highlights," 3. 20. Unless otherwise indicated, references to Cowell Hospital from Berkowitz, Disabled Policy, 200. 2I. Oda, "Highlights," 3-4. 22. Interview with Bruce Alan Kiernan, January I9, 1998. 23. Ed Roberts's comments on the relationship between disability rights and other civil rights movements, including the Women's Movement, as well as the Disabled Students Program, from Oda, "Highlights," 4-5. 24. Oda, "Highlights," 6. 25. Carr Massi, National Paraplegia Foundation News, January 1977, I. Massi was president of the New York Metropolitan Chapter of the National Paraplegia Foundation in 1977. 26. Berkowitz, Disabled Policy, 20I-2. Column by Georgie Ann Geyer, "Wheelchair Power! The Disabled Go Public," that appeared in the New York Times on July 5, 1975, was supplied by Judith E. Heumann's mother, Ilsa Heumann, to Berkowitz (p. 266, note 27). 27. Oda, "Highlights," 6. 28. Articles of both Simi Kelley and Jane Wifler appeared in the National Paraplegia Foundation News, November 1975, 3. 29. Oda, "Highlights," 7. 30. Judith E. Heumann, "Handicap and Disability," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University Press, 1979), 17. 31. Oda, "Highlights," 3. 32. Interview with Robert Levine, August 15, 1997. 33. Description of WID from WID Blue Ribbon Panel Newsletter, October 1992, I: I. 34. From Frank Bowe's May 28, 1996, letter to the authors. 35. Lucy Gwin, "True History," Mouth, January-March 1997, 7(5&6): 26-27. Partners in Policymaking is a group of disability activists who continue in 2000 to educate parents of children with disabilities about the disability rights movement and effective lobbying strategies. 36. Unless otherwise indicated, references to Fred Fay and the Boston Center for Independent Living from interview with Fay, July 5, 1996. 37. Unless otherwise indicated, references to Lex Frieden from interview with Frieden, July 16, 1997. 38. Berkowitz, Disabled Policy, 202. 39. Information about Independent Living Research Utilization from material provided by ILRU, July 24, 1997. 40. Information about Creative Living I and II, Columbus, Ohio, from material provided by Creative Living, April 26, 1996. 41. References to Rehabilitation Institute of Chicago and Marca Bristo, chairperson of the National Council on Disability since May 1994, from interview with Bristo, April 30, 1998. 42. Unless otherwise indicated, description of Access Living from conversation with Mary Delgado, May 6, 1998, Access Living information and referral administrator. 43. Adaptable design features are as follows: At least one building entrance must be on an accessible route. All public and common-use areas must be on readily accessible routes. All doors into and within all premises must be wide enough to allow passage by wheelchairs users. All premises must contain an accessible route into and through the dwelling unit. All light switches, electrical outlets, thermostats, and environmental controls must be in an accessible location. Reinforcements in the bathroom walls for later installation of grab bars around toilet, tub, and shower must be provided. Usable kitchens and bathrooms must be provided SO that a wheelchair user can maneuver about the space. See Kleo King, Know Your Fair Housing Rights, Eastern Paralyzed Veterans Association, 1997, 7. 44. See Paul K. Longmore, "Introduction," in H. Stephen Kaye, Disability Watch: The Status of People with Disabilities in the United States (Volcano, Calif.: Volcano Press, 1997), 13. 226 NOTES TO CHAPTER THREE 45. Description of visitability from interview with Karen Tamley, Housing Policy coordinator with Access Living, June 3, 1998, and Eleanor Smith of Concrete Change in Atlanta, July 6, 2000, who developed the concept of visitability. This concept is defined by four basic features in the design of buildings: level access at one entrance, at least, although not necessarily at the front entrance; interior doorways no less than thirty-two inches in width (including bathroom doors); switches and outlets at heights reachable by people with different disabilities; and reinforced supports behind walls permitting the attachment of grab bars used in bathrooms. Although adaptable design is a legal term, visitability-not a legal term-is defined by Smith as a grass-roots movement to ensure that new housing is accessible to all people as visitors. The concept of visitability has been incorporated in legislation in Georgia and Texas. 46. Josie Byzek, "Living in the Past," Ragged Edge, May/June 1998, 13. 47. Encyclopedia of Disability and Rehabilitation (New York: Simon & Schuster Macmillan, 1995), 399. 48. Funds also were allocated specifically for counseling and training of elderly blind adults and independent living rehabilitation of people with disabilities. The legislation providing for these latter two programs contradicts the spirit of the independent living paradigm. The first is not consistent with the ILC cross-disability focus; the second is an oxymoron because independent living and rehabilitation reflect different approaches to disability. Queens Independent Living Center, Inc.: A Timeline and History, compiled by Susan Jouard (executive director from 1983 to 1988), I5. 49. Encyclopedia of Disability and Rehabilitation, 403. 50. Similar to the composition of the ILC boards, a majority of the Statewide Independent Living Council (SILC) boards had to be people with disabilities. To avoid conflict of interest, SILC members could not be staff members of ILCs nor employees of state agencies. The three-year plan required approval by the chair of the SILC and the head of the rehabilitation agency. 5I. Christopher G. Bell and Robert L. Burgdorf, Accommodating the Spectrum of Individual Abilities (Washington, D.C.: U.S. Commission on Civil Rights, 1983), 84, footnote 95. 52. Gerben DeJong, "Independent Living: From Social Movement to Analytic Paradigm," The Psycho- logical and Social Impact of Physical Disability (New York: Springer Publishing Company, 1984). Comparison of rehabilitation to independent living from this source. 53. Sandra Schnur's presentation at Summer 1979 conference of the New York State Coalition of People with Disabilities (NYSCPD) at New York University's Weinstein Hall. 54. Gwin, "True History," 27. 55. Patricio Figueroa's presentation at Summer 1979 NYSCPD conference. 56. Tom Clancy's presentation at Summer 1979 NYSCPD conference. 57. Justin Dart's references to Fred Fay from a 1992 unpublished version of Justin Dart, "The ADA: A Promise To Be Kept," P. 8, received May 27, 1997, from Dart. 58. In 1977, a few members of DIA agreed to work with the Mayor's Office for People with Disabilities on a conference. When told that Tom Clancy-the TV poster figure for a public service announcement to "hire the handicapped"-would be a major speaker, they went to see him, fearful that he would embarrass them. Although they found him charming, sensitive, and intelligent, they were not prepared for the stirring speech that he delivered. Chapter Four I. Christopher G. Bell and Robert L. Burgdorf, Accommodating the Spectrum of Individual Abilities (Washington, D.C.: U.S. Commission on Civil Rights, 1983), 47. 2. Chava Willig Levy, A People's History of the Independent Living Movement (Lawrence, Kans.: Research and Training Center on Independent Living, 1988), I5. 3. References to the May 1973 demonstrations at the Capitol and the Lincoln Memorial as well as the legislative and executive compromise resulting in the Rehabilitation Act of 1973 from Richard B. Treanor, We Overcame: The Story of Civil Rights for Disabled People (Falls Church, Va.: Regal Direct Publishing, 1993), 59-60. 4. References to James Cherry from interview with Cherry, October 16, 1996. NOTES TO CHAPTER FOUR 227 5. Richard K. Scotch, From Goodwill to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple University Press, 1984), 52. See Scotch, PP. 5I-52, for the names of congressional staff involved in adapting (from Title VI of the 1964 Civil Rights Act) and drafting the language that ultimately became Section 504 of the Rehabilitation Act of 1973. In addition, the key role of the staff of the Office of Civil Rights of the Department of Health, Education, and Welfare (the agency initially authorized to implement Section 504)-particularly Martin Gerry and John Wodatch-in drafting the Section 504 regulations cannot be overestimated. See Scotch, 59, and chap. 4. 6. Cherry v. Mathews, 419 F. Supp. 922 (D.D.C. 1976). 7. Scotch, From Goodwill to Civil Rights, 104. 8. References to Eunice Fiorito and her roles in the American Coalition of Citizens with Disabilities and the Section 504 demonstrations from interview, June 6, 1997. Fiorito died on November 22, 1999. 9. Levy, A People's History, I5. IO. References to Frank Bowe's letter to Joseph Califano from Treanor, We Overcame, 72. II. Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), 66-69. I2. Levy, A People's History, 17. 13. Judith E. Heumann, "Handicap and Disability," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University Press, 1979), 20. 14. Shapiro, No Pity, 66. 15. Frank Bowe, "Handicapping America: Barriers to Disabled People," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University, 1979), 88-89. 16. William Coleman was Secretary of Transportation in the administration of President Ford. 17. These organizations included Disabled In Action of Pennsylvania, New York, New Jersey, and Baltimore, as well as the American Coalition of Citizens with Disabilities, the Center for Independent Living in Berkeley, Easter Seal of Pennsylvania, National Council of Senior Citizens, and Paralyzed Veterans of America. 18. The defendants in the case were the United States Department of Transportation (USDOT), the Urban Mass Transportation Administration (UMTA), and the Federal Aid Highway Administration (FAHA). 19. Interview with James Raggio, general counsel for the Access Board, July 25, 1997. In 1976, Raggio was an attorney in the Public Interest Law Center of Philadelphia, a nonprofit law firm that represented the plaintiffs in the Transbus lawsuit. 20. The laws to which the plaintiffs referred were Section 16(a) of the 1970 Urban Mass Transportation Assistance Act and Section 165(b) of the Federal-Aid Highway Act of 1973. In the late 1960s and early 1970s, Transbus was one-of the prototypes developed as a result of the $27 million federal grant awarded to the Booz Allen Hamilton Company. 2I. Frieda Zames, "Letter to the Membership," DIA Advocate, June 1977, I. 22. References to the July 12, 1978, Transbus demonstrations from Disabled In Action press release packet. 23. In the early 1970s, both the General Motors lift-equipped bus and the discarded Transbus were developed in a contest to create an accessible "Bus of the Future." 24. Interview with Dennis Cannon, December 24, 1996. References to Stanford Research Institute and General Motors from this source. 25. Interview with James Raggio, July 25, 1997. Raggio's reference to low-floor buses from this source. 26. Interview with Dennis Cannon, December 24, 1996. 27. 99 S.Ct. 2361 (1979). See reference to Southeastern Community College v. Davis later in this chapter in "Mainstreaming Public Transit." See EPVA Inc. et al. v. Metropolitan Transportation Authority et al. 79 A.D.2d 516 (1980). 28. "Group for Disabled Sues on Bus Design," New York Times, August 23, 1980, sec. 2, P. 26. 29. "Key" refers to subway, trolley, and commuter rail stations, including all end stations and those serving major activity centers, as well as stations having specific characteristics, such as many riders or transfer opportunities to other trains and different transportation modes. 228 NOTES TO CHAPTER FOUR 30. Twenty-four defendants were parties to Dopico v. Goldschmidt, including the following: New York State's Metropolitan Transportation Authority; New York City Transit; Mayor Edward Koch; New York State's and New York City's Departments of Transportation; and Carter's third Secretary of Transportation, Neil Goldschmidt. Although the case concerned New York City's public transportation system, state and federal agencies were involved because they had relevant supervisory and financial responsibilities. The plaintiffs include wheelchair users David and Rhea Dopico, Vincent and Muriel Zgardowski, as well-as DIA of Metropolitan New York, the only organizational plaintiff. 3I. 687 F2d 644. References to the U.S. Court of Appeals (2d Cir) decision in Dopico (1982) from Bell and Burgdorf, Accommodating the Spectrum, 137-38. 32. As a result of the 1981 APTA v. Lewis (D.C.) decision, retrofitting was not mandated. 33. 718 F2d 490 (Ist Cir 1983). 34. Bell and Burgdorf, Accommodating the Spectrum, 138. The disparity between the Dopico and Rhode Island decisions may be attributed to the difference in expenditures for public transportation in the two localities. The cost for public transit accessibility in New York City in comparison to the total public transit budget was minimal. In Rhode Island, a locale with a comparatively small public transit budget, the cost of public transit accessibility was a significant percentage of that budget. 35. "Handicapped Block Elevators at M.T.A.," New York Times, November 22, 1980, sec. 2, P. 27. 36. Those who attended the strategy sessions at the office of EPVA purposely chose a variation on the abbreviation MTA. 37. Jean Stewart, "What Do We Want? Access! When Do We Want It? Now!!!" DIA Advocate, January 1981, I-2. List of demands presented to MTA chairman Richard Ravitch from this source. 38. References to Anne Emerman's September 30, 1980, Ride the Bus Day experience from interview with Emerman, July II, 1996. 39. Interview with Ellen Nuzzi, February 16, 1997. 40. References to Michael Imperiale's lawsuit from interview with Imperiale and his attorney, Diane Morrison, December 7, 1996. 41. Interview with EPVA attorney James Weisman, April 8, 1996. While EPVA v. MTA (1982) was a federal Section 504 lawsuit, EPVA v. MTA (1979) involved the New York State Building Code and Human Rights Law. 42. Susan Sugar Nathan, Esq., "The Cost of Accessible Transportation: Myth and Reality," Disabled In Action Speaks, May 1981, 6. References to Stephen Berger's role in MTA's purchase of Grumman buses from this source. 43. Interview with James Weisman, April 8, 1996. Weisman referred to the 1982 New York Times editorial "There's a Wheelchair on the Tracks." The Public Buildings Law, requiring that all newly-built or extensively renovated subway stations be wheelchair accessible, was suspended for subways for eight years. 44. Interview with Ellen Nuzzi, February 16, 1997. 45. Ellen Nuzzi, "The Battle for Accessible Public Transit in NYC Continues," DIA Activist, November 1984, I. 46. Scotch, From Goodwill to Civil Rights, 188, note I8. 47. Anne Emerman, "We Won," DIA Activist, March 1985, I-2. References to the 1984 New York State Handicapped Transportation Bill from this source. 48. References to Harold Willson and the development of the BART system from Robert Levine, BART and the Handicapped, Document No. WP 17-1-75, prepared by the Metropolitan Transportation Commission for the U.S. Department of Transportation and the U.S. Department of Housing and Urban Development. 49. Scotch, From Goodwill to Civil Rights, 29-30. 50. Bell and Burgdorf, Accommodating the Spectrum, 38, footnote 149. 5I. Levine, BART and the Handicapped, 17. 52. The May 19, 1998, settlement of the class action lawsuit filed against BART on behalf of eight riders with mobility impairments revealed the necessity for constant vigilance by people with disabilities to maintain accessibility. Almost thirty years after the system was built, the plaintiffs were successful in requiring BART to make extensive renovations. "BART Settles Class Action Lawsuit," Disability News Service, June 1998, I(5): 8. NOTES TO CHAPTER FOUR 229 53. References to the 1974 California policy resolution on accessible bus purchases from interview with Dennis Cannon, December 24, 1996. 54. Interview with Robert Levine, transportation planner for the Nine-County San Francisco Bay Area, August 16, 1996. During this period, not only were wheelchair-accessible buses purchased by this commission, but also a coordinated paratransit system was developed in the district. 55. Interview with Dennis Cannon, December 24, 1996. 56. 458 F2d 1277 (7th Cir 1977). 57. 99 S.Ct. 2361. 58. Bell and Burgdorf, Accommodating the Spectrum, II2, footnote 55. 59. 655 F2d 1272 (C.A.D.C. 1981). Drew Lewis was President Carter's second Secretary of Transportation. 6o. The opinion of Third Circuit Court of Appeals Judge Carol Los Mansmann in ADAPT (American Disabled for Accessible Public Transit) v. Burnley, 867 F2d 1471 (1989), provides much valuable background information on this issue and is referred to here at length. The defendant in the original case was Transportation Secretary Elizabeth Dole, but was changed to James Burnley when he became Secretary, and then to Samuel Skinner when he succeeded Burnley in early 1989. Although the decision in the Burnley case was vacated not long after the ruling, in effect replaced by the holding by a larger Third Circuit Court in ADAPT v. Skinner, 881 F2d 1184 (1989), Judge Mansmann's comments in Burnley remain pertinent. In the Skinner decision, a divided court held that paratransit was a valid option, but that the 3 percent budget cap was not. Since 1990, ADAPT, a national disability organization, has been known as American Disabled for Attendant Programs Today. "Special efforts" was referred to in the 1970 Urban Mass Transportation Assistance Act, an amendment to the 1964 Urban Mass Transportation Act, sponsored by Representative Mario Biaggi (D-N.Y.), that provided federal funds to local transit agencies. 61. Opinion of Judge Mansmann. 62. Ibid. 63. Ibid. 64. References to "equivalent service criteria" for paratransit and lift-equipped buses from interview with Dennis Cannon, December 24, 1996. 65. Opinion of Judge Mansmann. 66. Senator Alan Cranston, December 14, 1982, I28 Congressional Record S15.714, daily edition. The fact that in recent years transit authorities throughout the nation are encouraging their wheelchair users to ride fixed-route buses rather than paratransit reflects the lower costs of these buses. 67. Senator Donald Riegle, December 20, 1982, I28 Congressional Record S15.714, daily edition. The approximate 1998 cost figures for New York City (roughly the same as in 2000) are as follows: Buses cost from $271,000 to $41,000. Lifts cost from $5,000 to $11,000. Paratransit passengers cost the company $27.50 per one-way trip, while bus passengers (disabled or nondisabled) cost only $1.85 per trip. Passengers make use of bus lifts in over 50,000 one-way trips per month. Passengers with disabilities make use of paratransit in roughly 125,000 one-way trips per month. All figures from conversation with Stephen Nacho, Director, Bus Company Relations Center, June 22, 2000, except for the last figure supplied to the authors on the same day by an anonymous paratransit official. Because few New York City subway stations are accessible, few people with mobility impairments use this mode of transportation. 68. Opinion of Judge Mansmann. 69. 469 U.S. 287. 70. Opinion of Judge Mansmann. 71. 623 F. Supp. 920 (D.Me. 1985). 72. References to the final USDOT Section 504 regulations from opinion of Judge Mansmann. 73. The 3½ percent criteria in the interim regulations was reduced to 3 percent in the final Section 504 USDOT regulations. 74. Opinion of Judge Mansmann. 75. References to the District Court decision in ADAPT v. Dole, 676 F. Supp. 635 (1988), from opinion of Judge Mansmann. 76. Treanor, We Overcame, 304. 230 NOTES TO CHAPTER FOUR 77. Because in November 1998 the New York City paratransit system (known as Access-A-Ride) was still not functioning in a manner consistent with "minimum service criteria," three paratransit users and five disability organizations sued the Metropolitan Transportation Authority and New York City Transit under the 1990 Americans with Disabilities Act. South Brooklyn Legal Services attorney Lee Ginsburg, who represented some of the plaintiffs, said that if the city adheres to the settlement, "disabled New Yorkers will have for the first time in history reliable transportation that will allow them to go to work, school and appointments. This should have national repercussions" (Richard Weir, "Disabled Reach Pact with City in Transportation Suit," New York Times, Sunday, October IO, 1999, sec. 14, p. 9). The 1989 ADAPT v. Skinner decision relied on the U.S. Court of Appeals 1987 ruling in Disabled in Action of Pennsylvania v. Sykes (833 F2d 1333) in holding that Department of Transportation regulations mandated the purchase of accessible buses. 78. Dennis Cannon, "Statement," Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: A Consultation Sponsored by the U.S. Commission on Civil Rights, May 13-14, 1980), 329-30. References to Cannon's "Statement" from this source. 79. The authors have substituted "educational" for "attitudinal" because it is clear from the context that Cannon intended the former word rather than the latter. 8o. Metropolitan areas of Atlanta, Boston, Chicago, Cleveland, Los Angeles, Miami, New York, Phil- adelphia, San Francisco, and Washington, D.C., have rapid transit-subway, elevated, and/or commuter trains-in 2000. Chapter Five I. Judith E. Heumann, "Statement," Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: A Consultation Sponsored by the United States Commission on Civil Rights, May I3- 14, 1980), 234-35. Unless otherwise indicated, references to Heumann's experience with and lawsuit against the New York City Board of Education from this source. 2. Judith E. Heumann, "Handicap and Disability," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University Press, 1979), I2. References to Heumann's experience with the American Civil Liberties Union and with Ted Childs from this source. 3. Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge: Cambridge University Press, 1987), 197. 4. Interview with Ilse Heumann, Judith Heumann's mother, June 22, 1996. 5. Andrew Hacker, Two Nations: Black and White, Separate, Hostile, Unequal (New York: Scribners, 1992), 20. 6. Frank Bowe, "Handicapping America: Barriers to Disabled People," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University, 1979), 90. 7. The founding of Disabled In Action occurred within a month of her rejection by the Board of Education (Berkowitz, Disabled Policy, 198). Again Heumann fought against disability discrimination when in 1975 she was arrested for refusing to leave a plane (that she had boarded unaccompanied) because the airline considered her a safety hazard (Ibid.). Her action propelled Senator Harrison Williams (D-N.J.) to publicly appeal for an end to such discrimination. 8. The following DIA chapters were formed after DIA of Metropolitan New York: DIA of Baltimore, DIA of Kentucky, DIA of New Jersey, DIA of Pennsylvania, DIA of Rockland (New York), DIA of Syracuse, DIA of Virginia, DIA of Western New York. By 2000, DIA of Metropolitan New York, Pennsylvania, and Syracuse were still actively engaged in political activity. Many of the leaders of other DIAs became employed in public or private agencies such as, for example, independent living centers. 9. From the album "Leap of Faith," Flying Fish Records, #90485. IO. In 1996, as a result of congressional action, the Legal Services Corporation (LSC) could no longer initiate class actions lawsuits. Hence, many of its most prominent attorneys, such as Jane Greengold Stevens, principal attorney representing the plaintiffs in Dopico v. Goldschmidt (1982), resigned from the LSC. II. Philip K. Howard, The Death of Common Sense: How Law is Suffocating America (New York: Random House, 1994). NOTES TO CHAPTER FIVE 231 I2. The purpose of Hill v. New York City Board of Elections (Supreme Court of Kings County) was to enforce Section 4-IO4 of the New York State Election Law. 13. Frieda Zames, "Accessible Polling Site Lawsuit Settled," DIA Activist, May 1995, 15-16. 14. Judge Herbert Kramer, "Memorandum to the Supreme Court of Kings County," June IO, 1986, 7. 15. 687 F2d 644 (2d Cir). 16. The Ford Foundation and the American Bar Association Special Committee on Public Interest Practice, "Public Interest Law: Five Years Later," 1976. 17. References to the history of NYLPI from Betty Hounslow, "New York Lawyers for the Public Interest Celebrating I5 Years" (New York: NYLPI, 1991). 18. New York Lawyers for the Public Interest Annual Luncheon Program, June 16, 1999. 19. References to Paul Hearne, the Legal Services Corporation, and DREDF start-up grant from interview with Hearne, June 25, 1997. From September 8, 1989, until his death, Paul Hearne was president of the Dole Foundation, a nonprofit organization created by then-Senator Bob Dole fostering the employment of people with disabilities. 20. Hearne (interview, June 25, 1997) indicated that New York City's Legal Services Corporation lost $250,000. The other $150,000, formerly earmarked for Handicapped Persons Legal Support Unit, was applied to fund a February 1980 conference in Minnesota, described by Hearne as "the first training program for lawyers in the country on the legal rights of people with disabilities." Hearne and attorney James Weisman presided over the conference. 21. Unless otherwise indicated, references to DREDF from "A Brief History" prepared by DREDF, I-2. 22. Interview with DREDF attorney Diane Lipton, July 31, 1997. 23. References to DREDF's role in the education of children with disabilities from interview with DREDF attorney Diane Lipton, July 31, 1997. 24. "What DREDF Is and Does," prepared by DREDF, p. I. 25. Rodman D. Griffin, "The Disabilities Act," CQ Researcher, December 27, 1991, 995. 26. 465 U.S. 555. 27. Interview with DREDF attorney Diane Lipton, July 3I, 1997. 28. Interview with Bruce Alan Kiernan, January 19, 1998. 29. Unless otherwise indicated, all references to Sidney Wolinsky from interview with Wolinsky, April 22, 1998. One of Wolinsky's cases, Elizabeth Guckenberger v. Boston University (1997), is discussed in chapter II. Chabner v. United of Omaha, 994 F. Supp. 1185 (N.D.Cal. 1998) is under appeal to the U.S. Court of Appeals for the Ninth Circuit. 30. Although sulphones are drugs that render a person with Hanson's disease noncontagious, these medications do not reverse the course of the disease. 3I. Unless otherwise indicated, all references to Stephen Gold from interview with Gold, July 7, 1997. The cases referred to by Gold are Strathie v. Department of Transportation, 716 F2d 227 (3d Cir 1983) (dealing with the bus driver), National Federation of the Blind v. LaPore, settled in the Eastern District Court of Pennsylvania in 1982, and Disabled in Action of Pennsylvania v. Sykes, 833 F2d III3 (3d Cir 1987), cert. denied, 108 S.Ct. 1293 (1988). 32. Interview with James Raggio, July 25, 1997. 33. Unless otherwise indicated, references to Michael Auberger and ADAPT demonstrations from interview with Auberger, July II, 1996. 34. Unless otherwise indicated, references to Wade Blank from Laura Hershey, "Wade Blank's Liberated Community," The Ragged Edge, ed. Barrett Shaw (Louisville: The Advocado Press, 1994), 150-51. 35. Interview with Michael Auberger, July II, 1996. 36. APTA v. Lewis (655 F2d 1272). 37. Brian Doherty, "Unreasonable Accommodation," Reason, August/September 1995, 22. References to ADAPT's protests against establishments that fail to provide ramps from this source. 38. Auberger is so anxious to do battle with the nursing home industry that he is willing to join forces with the HMOs to bring down powerful but vulnerable institutions. Fred Fay, on the other hand, sees the HMOs as the enemy to be eliminated. 39. Interview with Stephen Gold, July 7, 1997. 232 NOTES TO CHAPTER FIVE 40. Unless otherwise indicated, references to Newt Gingrich from "Newt Sponsors CASA [later known as MiCasa]," Mouth, July/August 1997, 5. On November 16, 1999, Senators Tom Harkin (D-Iowa) and Arlen Specter (R-Pa.) introduced an updated version of this legislation now known as the Medicaid Community Attendant Services and Supports Act (MiCassa). 41. Garry Pierre-Pierre, "Disrupting Sales at Greyhound, Disabled Protest Bus Access," New York Times, August 9, 1997, 26. Reference to Thomas K. Small from this source. 42. Interview with Stephen Gold, July 7, 1997. See chapter 6, note 71, for details of Department of Justice settlement with Greyhound, April I, 1999. 43. Disability activists such as Mary Johnson, former editor of Disability Rag; Anne Emerman, former director of the New York City Mayor's Office for People with Disabilities; and Robert Levine, coordinator of the New York City "One-Step" Campaign, though sensitive to ADAPT's goals, fear that the vision of individuals with disabilities crawling up steps may evoke images of powerlessness and dependency rather than pride and independence. 44. Jennifer Burnett, "Solidarity 200 Roars: Unity!" Mouth, January-March 1997, 4, 53. 45. Jean Dobbs, "And Justin for All," New Mobility: Disability Culture and Lifestyle, March 1998, 36. Reference to founding of JFA from this source. Dart has indicated that his disability activism also was spurred by the suicide of his brother, Peter, after his long struggle with polio and a head injury. 46. Burnett, "Solidarity 200 Roars," 53. 47. Burnett, "Solidarity 200 Roars," 53. Besides his role at JFA, Fred Fay also functions as chair of the Disability Advisory Committee to the Democratic National Committee as well as cofounder of the American Association of People with Disabilities (AAPD), modeled on the American Association of Retired People (AARP). 48. Unless otherwise indicated, references to Fred Fay's use of technology to perform his JFA activities from Deborah Ellen, "Lobbying for Rights of People with Disabilities," Connections, March 1998, 6. Though Fred Fay is required to lie supine, "his office [in his home] has sixty-four square feet of ceiling mirrors that allow him to maneuver easily" in his wheelbed. 49. Dobbs, "And Justice for All," 37. Justin Dart's reference to Ed Roberts from this source. 50. Burnett, "Solidarity 200 Roars," 4, 53. Chapter Six I. Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993). 2. Unless otherwise indicated, references to efforts to defeat or threats to weaken the ADA from interview with Justin Dart, June 14, 1997. 3. Sandra Parrino, National Council on Disability chairperson from 1983 to 1993, said of Lex Frieden, who had served with Justin Dart on Governor William Clements's task force: "Frieden recruited and hired the staff; he organized the office, and he developed policy." Interview with Parrino, June 30, 1997. 4. Interview with Lex Frieden, July 16, 1997. 5. Ibid. 6. Interview with Justin Dart, June 14, 1997. 7. Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge: Cambridge University Press, 1987), 13. 8. Nora Groce, The U.S. Role in International Disability Activities: A History and a Look Toward the Future (Oakland, Calif.: International Disability Exchanges and Studies Project, 1992), 136. 9. Interview with Justin Dart, June 14, 1997. References to President Carter NCD appointees from this source. IO. Justin Dart, "Introduction-The ADA: A Promise To Be Kept," Implementing the Americans with Disabilities Act, eds. Lawrence O. Gostin and Henry A. Beyer (Baltimore, Md.: Paul H. Brookes Publishing Co., 1993), xxii. References to a separate disability civil rights law from this source. NOTES TO CHAPTER SIX 233 II. Interview with Paul Hearne, June 25, 1997. Title 9, the 1972 amendment to the Civil Rights Act of 1964, included women in the law. I2. The Switzer building was named for Mary Switzer, the innovative, forceful administrator of the Office of Vocational Rehabilitation in the 1950s and 1960s, who funded programs that led to the independent living and disability rights movements (Groce, The U.S. Role in International Disability Activities, 55, 128-31). 13. Interview with Lex Frieden, July 16, 1997. 14. Interview with Sandra Parrino, June 30, 1997. I5. Interview with Justin Dart, June 14, 1997. 16. Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities-With Legislative Recommendations (Washington, D.C.: National Council on Disability, February 1986), 13. Paul Hearne says that many of the recommendations in Toward Independence were similar to those published in the report of the 1977 White House Conference on the Handicapped. 17. Interviews with Sandra Parrino, June 30, 1997, and Lex Frieden, July 16, 1997. 18. Unless otherwise indicated, references to the probability of civil rights legislation, such as the ADA, from Dart, "Introduction-The ADA," xxii. I9. Interview with Justin Dart, June 14, 1997. 20. Richard K. Scotch, From Goodwill to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple University Press, 1984), 164. 2I. Dart's view of the 1988 version of the ADA from interview with Justin Dart, June 14, 1997. 22. Interview with Paul Hearne, June 25, 1997. 23. Interview with Lex Frieden, July 16, 1997. 24. Interview with Justin Dart, June 14, 1997. 25. Interview with Paul Hearne, June 25, 1997. 26. Berkowitz, Disabled Policy, 208-9. 27. Interview with Justin Dart, June 14, 1997. References to Congressman Major Owens's 1988 Disability Task Force from this source. 28. References to Dale Brown and the National Network of Learning Disabled Adults, 1980 to 1994, from interview with Brown, April 26, 1998. This organization deals with the "internalized oppression," as well as the outright discrimination, experienced by learning disabled adults. 29. Fred Fay, "Empowerment: The Testament of Justin Dart Jr.," Mainstream, March 1998, 24. 30. From a 1992 unpublished version of "The ADA: A Promise To Be Kept," 4-5, received from Justin Dart, May 27, 1997. By 1997, there were fifty-four million people with disabilities in the United States. 3I. Interview with Paul Hearne, June 25, 1997. 32. Dart, 1992 unpublished version of "The ADA: A Promise To Be Kept," 5. 33. Coelho, quoted in Rodman D. Griffin, "The Disabilities Act," CQ Researcher, December 27, 1991, 1004. By 1994-95, a fifth, not a sixth, of the nation's population had some form of disability according to the ADA definition (John M. McNeil, "Current Population Reports: Americans with Disabilities, 1994- 1995," p. I, published by U.S. Department of Commerce, Census Bureau, August 1997). Coelho's statistic was based on an earlier census. 34. Interview with Sandra Parrino, June 30, 1997. 35. Griffin, "The Disabilities Act," 1004. 36. Interview with Sandra Parrino, June 30, 1997. 37. Conversation with Arthur Wohl, April 1982. 38. References to Justin Dart's trip to England from interview, June 14, 1997. 39. 42 USC I2IO2 (2)(a)(b)(c). 40. Ibid. 41. The Section 504 definition of a person with a disability from Scotch, 69. In the ADA definition of a person with a disability, "drug addict" in Section 504 was changed to "recovered drug addict." See 42 USC 12114 (b)(1)(2)(3). 42. 42 USC 12114 (a). Disability advocates chose not to oppose North Carolina Senator Jesse Helms's insistence that disabilities such as pedophilia and kleptomania also be excluded from ADA coverage. 234 NOTES TO CHAPTER SIX 43. H. Stephen Kaye, Disability Watch: The Status of People with Disabilities in the United States (Volcano, Calif.: Volcano Press, 1997), 13. 44. References to the 1992 Health Interview Survey from Kaye, Disability Watch, 12-13. 45. Geanne Rosenberg, "When the Mind Is the Matter: Mental Disability Cases Pose Painful Workplace Issues," New York Times, November 7, 1998, CI-2. 46. Steve Gold's comment about the purpose of ADA. 47. "Follow-up to 1994 Research," Ragged Edge, September/October, 1998, 5-6. 48. Janet Reno and Dick Thornburgh, "ADA-Not a Disabling Mandate," Wall Street Journal, July 26, 1995, AI3. 49. Peter Blanck, "Employment, Integration, Economic Opportunity, and the ADA: Empirical Study from 1990-1993," 79 Iowa Law Review (1994), 853-54. 50. 42 USC I2II2 (a). 5I. 42 USC 12III (9). 52. 42 USC 12114. 53. The U.S. Court of Appeals for the Fourth Circuit affirmed the District Court's ruling in 77 F2d 470. 54. 62 F2d по8 (1995). 55. The social work conference, "From Disability to Ability," was held at New York City's Fordham University on April 14, 1998. 56. 42 USC 12182. 57. 42 USC 12182 (b)(r)(B). 58. 42 USC 12181 (7). 59. 42 USC 12183 (a)(r)(2). 60. 42 USC 12183 (b). 61. 42 USC 12181 (9). In Pascuiti v. New York Yankees (98 Civ. 8186), Southern District (N.Y.) Judge Shira A. Scheindlin stated that the ADA is "silent as to who bears the burden of proving that [barrier] removal is readily achievable," and the courts have not yet dealt with the issue. 62. 42 USC 12182 (b)(2)(A)(v). 63. Matthew Diller, "Introduction: Civil Disturbances-Battles for Justice in New York City," Fordham Urban Law Journal, May 1999, 16(5): 1321. 64. References to the May 1996 Disability Rights Education and Defense Fund's ADA complaint against United Artists Theatre Circuit from interview with DREDF attorney Diane Lipton, July 3I, 1997. 65. Furthermore, assistive listening devices for people who are hard of hearing became commonplace in legitimate theaters as well as movie theaters. 66. Frieda Zames, "Unseating People with Disabilities," New York Able, February 1999, IO. "Stadium seating" is described in Iver Peterson, "Catching On at the Movies: A Clear View for All," New York Times, Sunday, January 3, 1999, sec. I, p. 27. 67. Unless otherwise indicated, references to the 1996 Justice Department suit against Days Inn from Betsy Wade, "Disabled Access to Inns at Issue," New York Times, Sunday, April 14, 1996, sec. 5, p. 4. 68. References to the settlement of the five lawsuits brought by the Justice Department against Days Inn Hotels and its parent company, and John Wodatch's response to the settlement, from http://www.nytimes. com/reuters/business/business-leisure-cend.html posted December 2, 1999. (Cedant was formed through a 1997 merger between HFS, Inc., and CUC International, Inc.) 69. "Justice Department Agreement with Friendly's," Washington Fax: President's Committee on Employ- ment of People with Disabilities, May 1997, 2. References to this agreement from this source. 70. See 42 USC 12184ff. 71. "Greyhound Must Comply," New York Able, November 1998, I. The details of a Department of Justice settlement on April I, 1999, with the over-the-road bus companies are as follows: new buses purchased or leased by over-the-road companies that gross over $5.3 million per year (such as Greyhound) must be wheelchair accessible by November 2000; new buses purchased or leased by over-the-road bus companies that gross under $5.3 million per year must be wheelchair accessible by October 2001. From a conversation with Terence Moakley, Associate Executive Director, Eastern Paralyzed Veterans Association, June 22, 2000. NOTES TO CHAPTER SIX 235 72. Fixed-route vehicles seating sixteen or more must be accessible. Fixed-route vehicles seating less than sixteen, and demand-response vehicles seating sixteen or more, require either accessibility or equivalent service. 73. Public service refers to programs or activities of any state or local government such as police and fire departments. 42 USC 12131. 74. 42 USC 12132 sec. 202. 75. Furthermore, curb cuts provide access to sidewalks not only for wheelchair and scooter users, but also for older people and small children, as well as for people with baby carriages, strollers, and shopping carts. 76. Kinney v. Yerusalim, 812 F. Supp. 547 (E.D.Pa.), aff'd 9 F3d 1067 (3d Cir 1993), cert. denied, II4 S.Ct. I545 (1994). 77. EPVA was still negotiating with New York City government on the curb-cut lawsuit as of this writing. 78. For example, Pietro Nivola of the Brookings Institution said that the disability laws-these unfunded federal mandates-are sapping federal money for transportation ("On the Line," WNYC-AM, February 18, 1999). 79. "TDD," DIA Activist, April 1992, 3. 8o. Newspaper accounts include the following: Bob Liff, "Many Fire Boxes in Watered-Down Plan," New York Daily News, April 24, 1996; Dan Janison, "Hizzoner Gets Burned in Alarm-Box Firefight," New York Post, April 24, 1996; Paul Moses, "Fire Box Compromise," New York Newsday, April 24, 1996. 81. Helen L. v. Didario, 46 F3d 325 (3d Cir 1995). 82. In a class action ADA lawsuit, Center for Disability Advocacy Rights attorney Valerie Bogart- representing three plaintiffs threatened with being placed in a nursing home against their will-said, "Congress [in enacting the ADA] has made a very strong statement against institutionalization" (Jennifer Steinhauer, "Ruling in Favor of Patients Denied 24-Hour Home Care," New York Times, February 17, 1999, B4). 83. Conversation with ADAPT attorney Stephen Gold, February 2, 1997. There were two plaintiffs in the Helen L. case, Helen L. and ADAPT. The U.S. Department of Justice joined the plaintiffs in the Helen L. lawsuit as an amicus curiae. 84. The comparative costs appear in Helen L. 85. See 42 USC I2146ff. Commuter rail systems, such as Amtrak, provide transportation between rather than within cities. 86. See 47 USC 225 and 47 USC 6II. For a description of the relay system, see "Teletypewriters and Relay Systems" in chapter 9 of this book. 87. See 42 USC 12201ff. 88. See II8 S.Ct. 2196. Linda Greenhouse, "Supreme Court Considers If Disabilities Act Covers HIV Case," New York Times, March 31, 1998, AI9. 89. Ibid. "The Centers for Disease Control and Prevention has reported that there is no documented case of a dentist or hygienist being infected with HIV from a patient. Mr. McCarthy [the attorney for the dentist] said that there were seven such cases and that the risk was understated and underreported." 90. "NCD Bulletin," publication of the National Council on Disability, December 1997, I. 9I. Linda Greenhouse, "Court to Weigh Whether HIV Is a Disability," New York Times, March 23, 1998, AI. 92. Ibid., AI3. 93. Linda Greenhouse, "Justices See HIV as Disability: Ruling on Bias Law," New York Times, June 26, 1998, AI. 94. Peter T. Kilborn, "Wide Impact Is Seen for Ruling on HIV," New York Times, June 27, 1998, AIO. 95. See the June 22, 1999, Supreme Court rulings in Sutton et al. v. United Air Lines, Inc., Murphy v. United Parcel Service, Inc., and Albertsons, Inc. v. Kirkingburg later in this chapter. 96. See 118 S.Ct. 1952. Unless otherwise indicated, references to Pennsylvania Department of Corrections v. Yeskey from Linda Greenhouse, "Federal Anti-Bias Law Protects States' Disabled Inmates, Court Says," New York Times, June 16, 1998, Ar8. 236 NOTES TO CHAPTER SIX 97. The court of appeals did not indicate the type of accommodation required for Yeskey. 98. From "U.S. Supreme Court Considers: Does the ADA Apply to State Prisons?" Disability Network Newsletter (published by New York Lawyers for the Public Interest), Spring 1998, 5. Comments of the U.S. Solicitor General on Pennsylvania Department of Corrections v. Yeskey from this source. 99. Although the Yeskey case established the intent of the ADA, a California lawsuit, Wilson v. Armstrong, dealt with a constitutional question that the U.S. Supreme Court had not yet heard as of this writing: Does Congress have "the authority to extend the law to the states and to breach state immunity from suit in federal court?" (Greenhouse, "Federal Anti-Bias Law Protects States' Disabled Inmates, Court Says," AI8). The Supreme Court is expected to rule on this issue in 2001 in Garrett v. Alabama. IOO. Carolyn C. Cleveland v. Policy Management Systems Corp., et al., 199 S.Ct. 900 (1999). IOI. II9 S.Ct. 633. IO2. II9 S.Ct. 2139. 103. II9 S.Ct. 1331. 104. II9 S.Ct. 2162. 105. "Individuals Belong in the Community, Not Institutions, Says Supreme Court," The Center for an Accessible Society: Background Briefing, June 22, 1999, I-2. Reference to William Stothers and Amici in Olmstead from this source. http://www.accessiblesociety.org/bkgdadatitle2.htm 106. Conversation with Stephen Gold, July 19, 1999. References to Gold's response to Olmstead from this source. The plaintiffs in Olmstead have both a psychiatric and a developmental disability. Rodriguez v. City of New York (2d Cir 1999) threatens Olmstead, as the defendants argued successfully that the type of care that people with cognitive disabilities (such as Alzheimer's disease) require to monitor their safety is a "different service" from the home care provided for those with physical disabilities. 107. Disability advocates are critical of some aspects of the Olmstead ruling: Only when "treatment professionals have determined that [it] is appropriate" is community placement required. "States can resist modifications that would fundamentally alter the nature of their services and programs." Without a definition of "a reasonable pace," states with "a waiting list that moves at a reasonable pace will have a defense against those who file suit." 108. The Supreme Court decision in Sutton et al. v. United Air Lines, Inc. References to Justice Sandra Day O'Connor's opinion in Sutton from this source. In writing the majority opinions for the Court in Murphy v. United Parcel Service, Inc., and Albertsons, Inc. v. Kirkingburg, Justices O'Connor and David Souter, respectively, referred to the Sutton decision. 109. The Supreme Court dissent in Sutton et al. v. United Air Lines, Inc. Emphasis in original. Unless otherwise indicated, references to Justice John Paul Stevens's opinion in Sutton from this source. IIO. Justice Stevens was pointing out that the Court's ruling that the ADA covers only those with existing unmitigated "substantial disabilities" was as if the Court had ruled that only African Americans could use the Civil Rights Act of 1964. III. "Supreme Court Rules in Title I Cases," The Center for an Accessible Society background briefing, June 22, 1999, I-2. http://www.accessiblesociety.org/bkgdadatitler.htm II2. Justice For All action alert regarding June 22, 1999, Supreme Court decisions. II3. Nadina LaSpina, "Supreme Court Rulings: Victory and Defeats," DIA Activist, Summer 1999. References to LaSpina from this source. II4. "Morning Edition," National Public Radio, June 29, 1999. References to Peter Thompson from this source. 115. See "Mainstreaming Public Transit" section of chapter 4 in this book for Davis and "Litigating the IDEA" section of chapter II of this book for Rowley. The Supreme Court treated the three June 22, 1999, ADA employment cases as if they were based on a benefits-rather than a civil rights-law. II6. Philip K. Howard, The Death of Common Sense: How Law is Suffocating America (New York: Random House, 1994), 150. II7. Brian Doherty, "Unreasonable Accommodation," Reason, August/September 1995, 19-26. Refer- ences to Doherty from this source. II8. Doherty, "Unreasonable Accommodation," 19. Emphasis added. II9. Interview with Harry Wieder, March 5, 1997. NOTES TO CHAPTER SEVEN 237 I20. Conversation with Justin Dart, July 22, 1997. I2I. James Bovard, "The Lame Game," American Spectator, July 1995, 30-33. I22. Ibid., 31. John Stossel also treats this case as if it were covered by the ADA. 123. Conversation with Justin Dart, July 22, 1997. 124. Stated by Stossel on "20/20," July 19, 1996. 125. During the second presidential debate on October 16, 1996, when Republican candidate Bob Dole criticized affirmative action, President Clinton responded, "Again I say, think of the Americans with Disabilities Act. Make an effort to put a ramp up there so someone in a wheelchair can get up." The term "affirmative action," which does not appear in the ADA, refers to employment issues. The term in the ADA that applies to the requirement to build ramps is "readily achievable." 126. Proceedings: U.S. Equal Employment Opportunity Commission (EEOC) Meeting, March 12, 1996, 33. 127. Janet Reno and Dick Thornburgh, "ADA-Not a Disabling Mandate," AI3. References to Reno and Thornburgh from this source. 128. "New Sears Report Shows Decrease in Accommodation Costs," Washington Fax, March 1996, I. References from the Sears Report from this source. 129. "Four Years After the ADA," Working Age: AARP Newsletter, November/September 1996, 4. 130. Walter Olson, The Excuse Factory: How Employment Law Is Paralyzing the American Workplace (New York: Free Press, 1997). In his November 28, 1997, op-ed article in the New York Times, Olson, of the Manhattan Institute, again revealed his misunderstanding of the ADA when he contended that anesthesiologist Frank Ruhl Peterson's unethical act-stealing narcotics from his patients to feed his own drug habit while continuing to practice medicine-is protected by the ADA. The ADA does not sanction illegal behavior nor protect any unqualified workers, including professionals. 131. Reno and Thornburgh, "ADA-Not a Disabling Mandate," AI3. 132. Interview with James Raggio, July 25, 1997. 133. Proceedings, 7. 134. Ibid., 8. 135. John Stossel of "20/20" (ABC-TV) and James Bovard of the Wall Street Journal are cited in Proceedings as telling "half truths about the ADA" (p. 34). 136. Proceedings, 8I-82. 137. Ibid., 40. Chapter Seven I. Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge: Cambridge University Press, 1987), 5. 2. The three ADA employment cases are Sutton et al. v. United Air Lines, Inc., Murphy v. United Parcel Service, Inc., and Albertsons, Inc. v. Kirkingburg. See chapter 6. 3. Philip Shabecoff, quoting Frank Bowe, in "On the Job, Myths Are Reality and Damaging." New York Times, Sunday, May 13, 1979. 4. References to 1998 Harris Poll from "Follow-up to I994 Research," Ragged Edge, September/October 1998, 5. 5. "Four Years After the ADA," Working Age: AARP Newsletter, 1996, 12(4): 3. 6. Caren Potoker, "Finding a Job Is aJob," DIA Activist, Summer 1999, I-2. References to Potoker from this source. 7. Claiborne Haughton Jr., director for Civilian Equal Employment Opportunity for the Defense Department, Proceedings: U.S. Equal Employment Opportunity Commission (EEOC) Meeting, March 12, 1996, 74. 8. Daniel Robert's interview with Raphael Nisan, April 20, 1997. 9. Proceedings, 89. Dr. Margaret Nosek, director of the Center for Research on Women with Disabilities, said, "Previous research indicated that women with disabilities constitute our nation's most severely oppressed minority" (press release, Baylor College of Medicine in Houston, July 7, 1997). IO. Proceedings, 2I. 238 NOTES TO CHAPTER SEVEN II. Ibid., 7I-72. I2. Interview with James Weisman, April 8, 1996. 13. Interview with Terence Moakley, April 8, 1996. References to Moakley from this source. 14. Speech by John Wingate at a celebration of the ADA at Gracie Mansion, August IO, 1993. References to Wingate from this source. 15. Goals and timetables refer to an effort to hire a determined number of qualified members of a specific population within a specified time period. I6. Interview with Anne Emerman, July 18, 1996. 17. "Part Three: Core Implications for the Twenty-First Century," Sears Report, I-2. References to the Sears Report from this source. 18. Nancy Anne Longhurst, The Self-Advocacy Movement by People with Developmental Disabilities: A Demographic Study and Directory of Self-Advocacy Groups in the United States (Washington, D.C.: American Association on Mental Retardation, 1994), I-6. References to the definition of "self-advocacy" and the evolution of the "self-advocacy movement" throughout the United States and British Columbia from this source. I9. Mary Hayden, "Absence of Justice," Mouth, March/April 1998, 34. 20. Achieving Independence: The Challenge for the 21st Century (Washington, D.C.: National Council on Disability, 1996), 99. 2I. Interview with Harvey Pacht, April 3, 1998. References to Pacht from this source. 22. As Bernard Carabello indicates in his job resumé, "With nearly six thousand inmates, Willowbrook typified the overcrowded, understaffed institutions relied on to 'handle the problem' of the developmentally disabled." Carabello has championed the movement for self-advocacy for people with developmental disabilities in New York State and across the nation. 23. The statistic was cited by Charles Lakin, director of the Research and Training Center on Commu- nity Living in Minneapolis. See Dirk Johnson, "Tight Labor Supply Creates Jobs for the Mentally Disabled," New York Times, November I5, 1999, AI, A22. 24. Robert Pear, "Employees Told To Accommodate the Mentally Ill," New York Times, April 30, 1997, AI, D22. Unless otherwise indicated, description of EEOC Enforcement Guidance from this source. 25. "EEOC Releases Policy Guidance Concerning the ADA and People with Psychiatric Disabilities," New York Able, May 1997, 3. 26. "Americans with Disabilities Update," National Council on Disability Bulletin, March 1997, I. 27. EEOC Enforcement Guidance: The Americans with Disabilities Act and Psychiatric Disabilities, March 27, 1997, I. 28. Ann Davis, "Courts Reject Many Mental-Disability Claims," Wall Street Journal, July 22, 1997, B6. References to outcome of these claims in trial courts from this source. 29. Geanne Rosenberg cites John Parry, director of the American Bar Association's Commission on Mental and Physical Disabilities Law, in "When the Mind Is the Matter: Mental Disability Cases Pose Painful Workplace Issues," New York Times, November 7, 1998, CI. Darryl Van Duch indicated in the National Law Journal (June 29, 1998, Boi) that employers won 86 percent of the disability cases resolved by the EEOC. Van Duch quoted a study of the American Bar Association Commission on Mental and Physical Disability Law in which twelve hundred cases filed since 1992 were reviewed. 30. Darryl Van Duch, "Employment and Labor Law" web site http://www.ljextra.com/practice/labor- employment/0629ada.html, posted June 29, 1998, I. EEOC recommendations from this source. 31. EEOC Enforcement Guidance, I. 32. Pear, "Employers Told To Accommodate the Mentally Ill," AI. References to the National Institute of Mental Health from this source. 33. Rosenberg, "When the Mind Is the Matter," CI-2. Rosenberg pointed out that "preliminary numbers for the 1998 fiscal year show yet another increase" for psychiatric disability claims. 34. Sheryl Gay Stolberg, "Breaks for Mental Illness: Just What the Government Ordered," New York Times, Sunday, May 4, 1997, sec. 4, p. I. Unless otherwise indicated, references to parity for psychiatric disabilities from this source. 35. Robert Pear, "Insurance Plans Skirt Requirement on Mental Health," New York Times, December 26, 1998, A20. Reference to Ronald E. Bachman from this source. NOTES TO CHAPTER SEVEN 239 36. Sally L. Satel, "When Work Is the Cure," New York Times, May IO, 1997, Ai9. References to Satel from this source. 37. Professor Michael Dorf of Columbia University Law School and former Supreme Court clerk to Justice Anthony Kennedy commented on the Supreme Court's June 1997 ruling that states may confine sex offenders to mental institutions after they have already completed criminal sentences: "In some ways that reflects a prejudice against people with mental illness, not just some concern about society" ("On the Line," WNYC-AM Radio, June 27, 1997). 38. Stolberg; "Breaks for Mental Illness," sec. 4, p. 5, quoting Peter D. Kramer. 39. Peter D. Kramer, "The Mentally Ill Deserve Job Protection," New York Times, May 6, 1997, A21. Unless otherwise indicated, references to Kramer from this source. 40. Kip Opperman, "Confidentiality: Who Needs To Know?" Connections, February 1997, 8. Opperman, who describes the requirements for an employee requesting disability accommodation, notes that they pertain also to college applicants and students. 41. EEOC Enforcement Guidance, 17. 42. Proceedings, 58-61. References to Claudia Center from this source. 43. Fox Butterfield, "Prisons Replace Hospitals for the Nation's Mentally III," New York Times, March 5, 1998, AI, A26. Unless otherwise indicated, references to the criminalization of people with psychiatric disabilities from this source. 44. "Morning Edition," National Public Radio, June IO, 1997. In response to the ADA, the Police Executive Research Forum, a coalition of progressive police chiefs, is working with the Justice Department to create a comprehensive training curriculum and model policy for police departments to deal with people with "mental illness." 45. Butterfield, "Prisons Replace Hospitals," AI, A26. The Mental Health Bell, symbol of the National Mental Health Association, was forged out of metal melted down from "barbaric" chains and shackles formerly used to restrain people with psychiatric disabilities (Michael Faenza, "Chains and Shackles Replaced with Programs and Services," New York ABLE, January 2000, 26M-27M. Faenza is president and CEO of the National Mental Health Association). 46. In 9 Highland Road (New York: Vintage Books, 1995), New York Times reporter Michael Winerip makes a compelling case for the benefits of group homes for people with psychiatric disabilities. 47. References to the July 24, 1998, shooting of two Capitol police officers by John Weston Jr. from Frank Rich, "This Way Lies Madness," New York Times, July 29, 1998, AI9. 48. Michael Winerip, "Bedlam on the Streets," New York Times, Sunday, May 23, 1999, sec. 6, PP. 45-46. The numbers in the 1950 to 1998 comparison were adjusted for inflation and population growth. Winerip adds, "Fewer than half of Americans with schizophrenia receive adequate care according to a 1998 national survey" (p. 45). 49. Rich, "This Way Lies Madness," A19. 50. Erica Goode, "With Help, Climbing Back from Schizophrenia's Isolation," New York Times, January 30, 1999, AI. Kendra Webdale's violent death, which occurred on January 3, 1999, prompted the adoption in August 1999 of the Assisted Outpatient Treatment Act in New York State, providing for court-ordered, involuntary treatment of almost any person at least eighteen years old who has a history of serious mental illness. The New York Times featured a front-page series of four articles (April 9-12, 2000) on "Rampage Killers," people with serious psychiatric problems who went on shooting sprees. Given the sensational examples presented, readers easily could have missed the following statement buried in the jump page of the third article: "Few of these people [with psychiatric disabilities] commit murder, of course, and shootings by the mentally ill account for only a tiny fraction of all homicides" (Fox Butterfield, "Hole in Gun Control Law Lets Mentally Ill Through," New York Times, April II, 2000, A24). 5I. Winerip, "Bedlam on the Streets," 42-44, 70. That the Assisted Outpatient Treatment Act is known as Kendra's Law is misleading, for as John Gresham, senior litigation counsel for New York Lawyers for the Public Interest, notes, "It is extremely unlikely that the tragedy of Kendra Webdale would have been prevented if such a law had existed at the time of her death" (conversation with Gresham, November 18, 1999). 52. Rich, "This Way Lies Madness," Ar9. Rich refers to Sylvia Nasar, A Beautiful Mind: A Biography of John Forbes Nash, Jr. (New York: Simon & Schuster, 1998). 240 NOTES TO CHAPTER SEVEN 53. Unless otherwise indicated, references to Clifford W. Beers and the NMHA from Faenza, "Chains and Shackles Replaced with Programs and Services," 26M-27M and the Association web site http://www. nmha.org. Beers's Mind That Found Itself: An Autobiography, which is out of print, is available from Reprint Services Corporation. 54. Interview with Patrick Cody, vice president for Communications of the NMHA, January 26, 2000. 55. Interview with Judi Chamberlin, March 26, 1998. Unless otherwise indicated, references to Cham- berlin and the organization of people with psychiatric disabilities ("psychiatric survivors") from this source. 56. Interview with Marvin Spieler, consumer advocate for Mental Health Association of New York City, January 25, 2000. 57. Judi Chamberlin, "Psychiatric Survivors: Are We Part of the Disability Movement?" The Disability Rag, March/April 1995, I, 4-6. 58. Interview with Marvin Spieler, January 25, 2000. 59. Chamberlin, "Psychiatric Survivors," 4. In Transforming Madness: New Lives for People Living with Mental Illness (New York: William Morrow and Company, Inc., 1999), Jay Neugeboren describes people who, though they have experienced long-term, serious psychiatric disorders, have emerged with meaningful lives. Yet, as Neugeboren recounts, his own brother has not recovered from this illness. 60. National Public Radio News, May 15, 1998. References to the Archives of General Psychiatry study from this source. 61. Interview with Richard Greer, March 24, 1998. Unless otherwise indicated, references to Greer and the National Alliance for the Mentally Ill from this source. 62. The National Alliance for the Mentally III, which has fostered biochemical approaches to mental illness, has accepted over $II million from the pharmaceutical industry, as reported in Mother Jones (Ken Silverstein, "Prozac.org," November/December, 1999, 22-23). 63. Interview with Patrick Cody, January 26, 2000. 64. Interview with Marvin Spieler, January 25, 2000. The rebel Connecticut Chapter of the National Alliance for the Mentally Ill opposes "involuntary outpatient commitment" laws, as indicated by a statement issued by the chapter's board- of directors in February 2000. The position of the National Council on Disability regarding "involuntary outpatient commitment" is consistent with that of NMHA and "psychiatric survivors" ("From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves," the NCD Report, January 20, 2000). 65. "Talk of the Nation," National Public Radio, July 31, 1997. Joseph Rogers is executive director of the Mental Health Association of Southeastern Pennsylvania and of the affiliated National Mental Health Consumers' Self-Help Clearinghouse, both in Philadelphia. 66. References to Ken Steele from "Talk of the Nation," National Public Radio, October 25, 1999, and from Michael Faenza, "Voter Project Goes National," and Ken Steele, "The Making of the Voter Empowerment Project," both articles in New York City Voices: A Consumer Journal for Mental Health Advocacy, September/October 1999, I, 4, 7. 67. Surgeon General Dr. David Satcher reported that "while 22 percent of the population has a diag- nosable mental disorder" and "a range of effective treatments exist for nearly all mental disorders, including the'most severe, nearly two-thirds of all people [with such disorders] do not seek treatment" because of lack of information and appropriate insurance coverage as well as fear of stigma. Satcher's definition of mental disorders includes not only psychiatric but also cognitive disabilities such as Alzheimer's disease, attention-deficit disorder, or hyperactivity. Robert Pear, "Mental Disorders Common, U.S. Says; Many Not Treated," New York Times, Sunday, December 13, 1999, AI. 68. The Fair Housing Amendments Act of 1988 prohibits discrimination against people with dis- abilities in housing sales, rentals, or financing; requires reasonable modifications of existing premises; and mandates basic accessibility in newly constructed multi-family dwellings (Kleo King, Know Your Fair Housing Rights, published by Eastern Paralyzed Veterans Association, 1997). 69. "60 Minutes: HMO-Managed or Mangled," CBS-TV, January 5, 1997. References to Keith Dixon and James Wrich from this source. 70. A capitation payment is the fixed price that a managed care organization determines is appropriate to provide all health care per managed care consumer for a specific year. NOTES TO CHAPTER SEVEN 24I 71. Robert Pear, "Elderly and Poor Do Worse Under HMO Plans' Care," New York Times, October 2, 1996, AIO. 72. Information about the Fall 1998 changes in the Medicare system from "All Things Considered," National Public Radio, June 9, 1998. 73. Rebuilding Medicare for the 21st Century, The National Campaign to Protect, Improve, and Expand Medicare, 1999, 13. 74. Interview with Lani Sanjek, March 4, 1999. Unless otherwise indicated, references to Sanjek, Medicare Plus Choice, a two-tier health care system, the Kyl Amendment, and HMO client recruitment strategies from this source. 75. "All Things Considered," National Public Radio, June 9, 1998. By February 1999, there were forty million Medicare beneficiaries (Rebuilding Medicare for the 21st Century, 7). 76. Robert Pear, "Panel Finds Medicare Costs Are Underestimated by U.S.," New York Times, June 3, 1998, A23. Reference to Gray Panthers, a national grass-roots organization of older people, from this source. 77. Achieving Independence, 8I. 78. Interview with Elisabeth Benjamin, New York City Legal Aid Attorney, April 16, 1998. References to the 1993 Tennessee Medicaid plan, which included people with incomes up to three times the poverty level, from this source. 79. Linda Peeno, "What Is the Value of a Voice?" U.S. News and World Report, March 9, 1998, 40-46. Reference to "Cadillac care" from this source. 8o. "Frontline," Public Broadcasting System, April 14, 1998. 8I. Interview with Susan Scheer, June 19, 1998. References to Scheer's work at the New York City Public Advocate's office from this source. 82. Interview with Alexander Wood, June 18, 1998. Reference to the Oxford HMO response to Wood's request for a pillow from this source. On June 23, 1998, Wood's struggle with Oxford to get an appropriate wheelchair was described on NBC-TV News. 83. Milt Freudenheim, "Pioneering State for Managed Care Considers Change," New York Times, July 14, 1997, AI, D8. Unless otherwise indicated, references to HMO consumer rights bills from this source. 84. Examples of consumer bill of rights mandates described by Representative Frank Pallone (D-N.J.) in "On the Line," WNYC-AM, June 9, 1998. 85. David E. Rosenbaum, "House Hears Grim Tales about Managed Care," New York Times, October 8, 1999, A23. While California enacted similar legislation less than two weeks before the House vote, the House bill still required reconciliation with the Senate version before becoming federal law. See also James Sterngold, "Trailblazing California Broadens the Rights of Its HMO Patients," New York Times, September 28, 1999, AI, A20. The New York Times stated in an editorial (June 14, 2000), "The Supreme Court's unanimous decision [on June 12, 2000 in Pegram v. Herdrich, No. 98-1949] that patients cannot sue health maintenance organizations for giving their doctors financial incentives to hold down costs is a reasoned analysis of the state of federal law. But the decision also underscores the need for Congress to set standards for how the managed-care industry operates and to expand the rights of patients who have been harmed by managed-care decisions, including the denial of care" (p. A26). 86. Betsy McCaughey Ross, "One Man's Battle with Managed Care," New York Times, December 28, 1996, A27. 87. Bob Herbert quoted Dr. Finley in "A Chance to Survive," New York Times, July 4, 1997, AI9. 88. Ross, "One Man's Battle," A27. 89. Interview with Robert Fasano, December 3I, 1996. Oregon state officials have been rethinking the concept of health care rationing since 1994; nonetheless, doctors and federal Medicaid regulators have doubts about the program (Peter T. Kilborn, "Oregon Falters on a New Path to Health Care," New York Times, Sunday, January 3, 1999, AI). 90. Robert Fasano, a social worker, and his wife, an attorney, were forced to reduce their savings precipitously-a requirement known as "spending down"-so that he would be eligible for Medicaid. 91. References to the exclusion of medication from Medicare from "Morning Edition," National Public Radio, February 5, 1999. 242 NOTES TO CHAPTER SEVEN 92. "Medical Equipment," New York Times, January 20, 1999, AI2. DeSario v. Thomas, 97-6027 (2d Cir 1998) became Slekis v. Thomas, 98-5070 (S.Ct. 1999) when the case was reviewed by the U.S. Supreme Court. References to the September 1998 Health Care Financing Administration letter to Medicaid directors from this source. 93. Unless otherwise indicated, references to DeSario v. Thomas from Jonathan Rabinowitz, "Court Panel's Ruling Limiting Medicaid Services Is Appealed," New York Times, April 7, 1998, B6. 94. Justice For All email [email protected], January 22, 1999. Reference to the amicus brief of the coalition of eighty-one state and national organizations (represented by the Greater Upstate New York Law Project and the Legal Aid Society of New York City) supporting the plaintiffs from this source. 95. Interview with Melinda Dutton, February 24, 1999. References to the effect of the Balanced Budget Act of I997 on the safety net for children with disabilities from this source. 96. Peter T. Kilborn, "Disabled Children Feel Pain of Cuts," New York Times, March 24, 1997, Aro. 97. Robert Pear, "Fearing Errors, U.S. Will Review Cutoff in Aid to Disabled Youth," New York Times, December 18, 1997, A21. 98. Accepted by members of Congress such as former House Speaker Newt Gingrich (R-Ga.), Repre- sentative Gerald Klecxka (D-Wisc.) and news commentators such as Sam Donaldson, Diane Sawyer, and Mike Wallace, the 1994 bizarre accusation-that poor parents were coaching their children to feign "mental disorders" in order to receive SSI benefits-was totally discredited by Joyce Purnick in "Throwing Out the Disabled, Or the Fraud?" New York Times, August 8, 1996, BI. Names of legislators and news commentators who accepted this discredited charge from Ken Silverstein and Alexander Cockburn, Counterpunch, July 15, 1995, I. 99. Pear, "Fearing Errors," A21. References to the Zebley ruling from Marta Russell's Beyond Ramps: Disability at the End of the Social Contract (Monroe, Maine: Common Courage Press, 1998), 156. See Sullivan v. Zebley, 493 U.S. 52I (1990). 100. This Medicaid waiver program, known as the Katie Beckett program, was established in the late 1970S and early 1980s for children with severe disabilities or illnesses by Family Voices, the national advocacy organization founded by Katie Beckett's mother, Julie Beckett. IOI. Children with disabilities whose immigrant status prevent them from receiving Medicaid generally do not receive CHIP benefits. IO2. For example, in 1997 in New York State, 77 percent of uninsured children who were eligible for Medicaid or CHIP were not enrolled. 103. Achieving Independence, 85. 104. Melvyn R. Tanzman, "Work Incentives and Long Term Care Programs Proposed by President Clinton," New York Able, February 1999, 8. 105. Achieving Independence, 8I. 106. Robert Pear, "Medicare Cuts Would Reduce At-Home Care for Patients," New York Times, February 9, 1997, A30. Unless otherwise indicated, references to complex medical services provided in the home from this source. 107. Ian Fisher, "Families Provide Medical Care, Tubes and All," New York Times, June 7, 1998, AI. 108. Although in "Medicare Cuts Would Reduce At-Home Care for Patients," A30, Pear discusses the threat to only Medicare recipients of long-term home health care, Medicaid beneficiaries are also threatened. 109. "MarketPlace," National Public Radio, March 12, 1998. References to 1997 cuts in home health care from this source. IIO. Interview with New York City comptroller Alan Hevesi, July 21, 1997. III. Unless otherwise indicated, references to recommendations of the NCD regarding Medicare and Medicaid from Achieving Independence, 90-91. II2. Sections 503 and 504 apply to federal contractors and recipients of federal funds. II3. Berkowitz, Disabled Policy, 106. II4. Interview with Lani Sanjek, March 4, 1999. II5. Anne Emerman, "Testimony on the Future of Medicare," New York Able, January 1999, 7. II6. Achieving Independence, 86. NOTES TO CHAPTER EIGHT 243 II7. Tanzman, "Work Incentives," 8. I18. References to the NCD recommendations regarding Medicaid and health care ombudsman from Achieving Independence, 90-92. II9. Achieving Independence, 89. The federal Health Care Financing Administration (HCFA), the agency that oversees Medicare and Medicaid, is the largest purchaser of managed care in the country ("Rising Medicare Standards," New York Times, Sunday, December 29, 1996, sec. 4, P. 8). I20. Achieving Independence, 88-90. I2I. Former employees on SSDI receive Medicare after two years, even if they have not reached the age of sixty-five. For a nine-month trial period, a person on SSDI may earn more than seven hundred dollars a month and still remain on SSDI. If that person earns more than seven hundred dollars a month for longer than nine months, then that individual may lose SSDI and therefore Medicare. I22. Achieving Independence, 83. 123. Ibid., 74. 124. Proceedings, 30-31. Rebecca Ogle also points out the need for intensive education, habilitation, and rehabilitation services to prepare young people with disabilities for mainstream employment. 125. References to WIIA from John F. Harris, "House Passes Job Benefit for Disabled," Washington Post, October 20, 1999, Ao2, and "WIIA Vote Counts," email [email protected], November 22, 1999. 126. Supplemental Security Income, a federal welfare program initiated in 1974, is provided to disabled or older individuals, ineligible for Social Security Disability Insurance, who cannot work. Unless people have worked under the social security system for no less than ten years (forty three-month periods, not necessarily consecutively), they are ineligible for SSDI. 127. References to Paul Longmore's employment problems from "Beyond Affliction: What's Work Got To Do with It" (aired at different times in various parts of the country on National Public Radio during the week of May 4, 1998). 128. President Clinton's January 14, 1999, remarks on his Disability Initiative to encourage employment of people with disabilities. See Suzanne Christy, "President Includes Disabled: $2 Billion Budgeted to Bolster Employment Opportunities," New York Able, March 1999, I and I2. 129. Proceedings, 13. 130. Sections 50I and 503 of the Rehabilitation Act of 1973 require affirmative action to employ qualified people with disabilities in the federal government. Some local governments have affirmative action requirements similar to that of the federal government. The ADA, which applies to employment in the private sector, however, does not mandate affirmative action. 131. Proceedings, 75. Chapter Eight I. Nat Hentoff quoted Margaret Mead in "We Hear the Death Train Coming," Village Voice, February 4, 1997, 12. See also Michael Specter, "The Dangerous Philosopher," The New Yorker, September 6, 1999, 46-55. For a comprehensive analysis of some of the cases and issues discussed in this chapter, see Gregory E. Pence, Classic Cases in Medical Ethics (New York: McGraw Hill, 2000). 2. "People with physical and mental disabilities still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized and murdered" (Norman Kunc and Emma Van Der Klift, "A Credo For Support," Moebius Syndrome News, 1995). 3. Although he is frequently referred to as Dr. Jack Kevorkian, not only was his Michigan medical license revoked in 1991, but also "the only remedies he 'prescribes' are poisons" (Michael Betzold, "The Selling of Dr. Death," The New Republic, May 26, 1997, 22-23). 4. Mark O'Brien, "Maybe You'd Rather Die Than Be Me," DIA Activist, January 1997, 3. 5. Nadina LaSpina quoted Diane Coleman and Stephen Gold in "We Want To Live," New York Able, January 1997, 7. 6. The CBS program "60 Minutes" presented Jack Kevorkian's videotape of his euthanasia of Thomas Youk. Although in their response to this "60 Minutes" broadcast producers of the November 23, 1998, 244 NOTES TO CHAPTER EIGHT ABC program "Nightline" decided against disability representation, on February 28, 1999, "60 Minutes" presented people living meaningful lives with ALS. 7. Diane Coleman, letter to Not Dead Yet Members and Supporters, January 25, 1999. 8. Pam Belluck, "Dr. Kevorkian Is a Murderer, the Jury Finds," New York Times, March 27, 1999, AI, A9. Jack Kevorkian was found guilty of murder in Pontiac, Michigan, on March 26, 1999. 9. Michael Betzold, Appointment with Dr. Death (Troy, Mich.: Momentum Books, 1993). References to Jack Lessenberry from Michael Betzold, "The Selling of Dr. Death," New Republic, May 26, 1997, 22-28. IO. "Lessenberry has also published pieces flattering toward Kevorkian and Fieger in Esquire, George, Vanity Fair and other publications" (Betzold, "The Selling of Dr. Death," 25). II. Betzold, "The Selling of Dr. Death," 22. 12. Nat Hentoff, "Class Warfare to the Death," Village Voice, May 21, 1996, I2. 13. John Gresham of New York Lawyers for the Public Interest provided information about Vacco v. Quill, II7 S.Ct. 2293 (1997). See Washington v. Glucksberg, II7 S.Ct. 2258 (1997). 14. LaSpina, "We Want To Live," 7. 15. Nat Hentoff, "Death's Enemy: Yale Kamisar," Village Voice, May 28, 1996, IO. Hentoff paraphrased from Kamisar's Minnesota Law Review article, "Some Non-Religious Views Against Proposed 'Mercy Killing' Legislation." 16. Hentoff, "Death's Enemy." Hentoff quoted from Kamisar's essay that appeared in the University of Detroit Mercy Law Review. 17. Hentoff, "Death's Enemy." Hentoff quoted Robert Beezer. 18. Information from annotated list of participating law firms distributed at June 19, 1997, luncheon of New York Lawyers for the Public Interest. 19. "Excerpts from Court's Decision Upholding Bans on Assisted Suicide," New York Times, June 27, 1997, AI8. 20. David France, quoting Larry Kramer, in "A Life-and-Death Decision," New York Times, January 13, 1997, 26-27. Discussion of The Normal Heart as a spur to Larry Kramer's support of Jack Kevorkian's assisted suicides from this source. 2I. "Small Group of Doctors Supports Concept of Assisting in Suicide," New York Times, October 3I, 1996, A20. 22. "60 Minutes," CBS Television, January 5, 1997. References to publications by Timothy Quill and Lonnie Shavelson in the New England Journal of Medicine from this source. See Timothy Quill, "Death and Dignity: A Case of Individualized Decision Making," NEJM, 324(10) (March 7, 1991): 691-94. 23. "A Poll of AIDS Doctors Finds That Many Help in Suicides," New York Times, February 6, 1997, AI8. New York Times reference to this survey of San Francisco Bay Area physicians from February 5, 1997, article published in the New England Journal of Medicine. 24. References to Sheila Diamond and Dr. Ira Byock from "Nightline," ABC-TV, January 9, 1997. 25. References to Kathleen Foley from Paul Wilkes, "The Next Pro-Lifers," New York Times Magazine, Sunday, July 21, 1996, 45. 26. Daniel Carr and Nelson Hendler stated their views on pain management on the WNYC-AM program "On the Line," March 24, 1997. References to Carr and Hendler from this source. 27. Robert Pear, "Clinton Names Panel to Draft Health Consumer Bill of Rights," New York Times, March 27, 1997, BII. 28. Brian Lehrer, well-informed radio host of "On the Line" (WNYC-AM), offered this observation during his interview with Carr and Hendler. 29. "Reeve Feels Others Show As Much Courage," Brainerd Daily Dispatch, October 28, 1996, 6A. 30. David Peterson, "Reeve's Honesty Charms His Audience," Minneapolis Star Tribune, October 28, 1996, AI2. When a television commercial using computer animation showed Reeve walking, "many advocates for the handicapped were aghast, maintaining that no such cure is in the offing, and that the spot cruelly offered false hope to people who should be concentrating on adapting to life with their disabilities" (Bernard Stamler, "Christopher Reeve Is Sanguine about His Madison Avenue Connections, but Some Are Skeptical," New York Times, June I5, 2000, CIO). 31. Information about and comments of Marca Bristo from authors' April 30, 1998, interview with Bristo. NOTES TO CHAPTER EIGHT 245 32. "Superman's Telethon," Ragged Edge, May/June 1998, 27. 33. "Reeve Feels Others Show As Much Courage," 6A. 34. Christopher Reeve, Still Me (New York: Random House, 1998). 35. John Hockenberry, Moving Violations: War Zones, Wheelchairs, and Declarations of Independence (New York: Hyperion, 1995), 204. 36. Daniel Robert, "A Rock and A Hard Place-Superman, Dr. Death and You and Me," New York Able, February 1997, II. 37. Martin S. Pernick, The Black Stork: Eugenics and the Death of "Defective" Babies in American Medicine and Motion Pictures (New York: Oxford University Press, 1996). 38. Stated by Martin S. Pernick in "Tomorrow's Children: Beyond Affliction: The Disability History Project," National Public Radio, May 1998. 39. Pernick, The Black Stork, 5-6. 40. Ibid., 7. Although the New York Times supported Haiselden on eugenics, the newspaper eventually took issue with his publicity-seeking. 4I. Pernick, The Black Stork, I6. 42. Robert J. Lifton, The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: Basic Books, 1986), 23. 43. Ibid., 23. Unless otherwise indicated, references to Fritz Lenz from this source. Lenz was referring to the research, such as that at Cold Spring Harbor, New York, guided by Charles B. Davenport and financed by the Carnegie Institution in Washington and by Mary Harriman. 44. Virginia Kallianes and Phyllis Rubenfeld, "Disabled Women and Reproductive Rights," Disability and Society, 1997, 12(2): 212. 45. Quoted in footnote in Lifton, The Nazi Doctors, 23. Reference to "national degeneration" from this source. 46. Diane Coleman, J.D., and Carol Gill, Ph.D., testified before the Constitution Subcommittee of the U.S. House Judiciary Committee on April 29, 1996. References to Coleman and Gill from this source. 47. The 1996 Israeli documentary Healing by Killing, produced and directed by Nitzan Aviram, pointed out that without "the technical know-how from euthanasia" and "euthanasia teams" already in place, the Holocaust may not have been possible. 48. In By Trust Betrayed (Arlington, Va.: Vandamere Press, 1995, 202-3), Hugh Gregory Gallagher credited this reversal to many people who risked their lives: disabled people themselves, as well as others, including some clergy, some doctors and nurses, and even some Nazi party members. While the execution of Jews, gypsies, homosexuals, and others was not condemned by most German people, many were troubled by the killing of what they considered to be "German" people with disabilities. 49. Marta Russell, Beyond Ramps: Disability at the End of the Social Contract (Monroe, Maine: Common Courage Press, 1998), 27-28. References to the Nuremberg Court from this source. 50. In Freedom To Die (New York: St. Martin's Press, 1998), authors Derek Humphry and Mary Clement imply that there indeed is a duty to die: "Is there, in fact, a duty to die-a responsibility within the family unit-that should remain voluntary but expected nevertheless?" (p. 313). 5I. Michael Betzold in a letter published in the June 30, 1997, New Republic-commenting on his May 26, 1997, New Republic article, "The Selling of Dr. Death"-described Kevorkian as "a man who advocates medical experiments as part of euthanasia for people who are disabled and depressed." 52. Coleman and Gill, testimony before the Constitution Subcommittee of the House Judiciary Committee on April 29, 1996. In her July 14, 1998, testimony before the Constitution Subcommittee of the House Judiciary Committee, Coleman indicated that although Kevorkian's acts violate Michigan law according to the state Supreme Court, he is "still killing people with non-terminal disabilities, and now even harvesting their organs." 53. John Hess, formerly of the New York Times, argued on WNYC-AM on "New York and Company," June 6, 1996, that in the United States, the economy is currently booming, and therefore scarcity is a manufactured product of a conservative social agenda. 54. Humphry and Clement, Freedom to Die, 313. 55. John Hardwig, "Is There a Duty to Die?" Hastings Center Report, March-April 1997, 27(2): 8o. Emphasis added. 246 NOTES TO CHAPTER EIGHT 56. Unless otherwise indicated, references to Anne Emerman's views on physician-assisted suicide from her January IO, 1997, conversation with authors. Wilkes, "The Next Pro-Lifers," 42. Wilkes quoted Yale Kamisar. 57. Ezekiel J. Emanuel, associate professor of ethics and medicine at Harvard Medical School, and Linda L. Emanuel, vice president for ethical standards at the American Medical Association, "Assisted Suicide? Not In My State," New York Times, July 24, 1997, A2I. This article appeared before the referendum victory for physician-assisted suicide in Oregon on November 4, 1997. See Timothy Egan, "Right To Die: In Oregon, Opening a New Front in the World of Medicine," New York Times, November 6, 1997, A26. 58. Neil A. Lewis, "Reno Lifts Barrier to Oregon's Law on Aided Suicide," New York Times, June 6, 1998, Ar. 59. Emanuel and Emanuel, "Assisted Suicide?", A21. References to the Emanuels from this source. 60. France, "A Life-and-Death Decision," 26. Sheryl Gay Stolberg, in "Assisted Suicides Are Rare, Survey of Doctors Finds," New York Times, April 23, 1998, AI. Stolberg, offering statistics that conflicted with those presented in France's article, indicated that although only 5 percent of physicians admitted that they have given lethal injections, more say they would do so if such action were legally sanctioned. 6I. Timothy Egan, "Right to Die," A26. 62. Lewis, "Reno Lifts Barrier," AI. References to Reno's ruling on Oregon's assisted suicide law from this source. Although according to the Associated Press, November II, 1997, "Administrator Thomas Constantine [of the Drug Enforcement Administration] warned that doctors who take part in assisted suicides would be violating federal narcotics law and risk losing their licenses to prescribe drugs," Reno reversed that position on June 5, 1998. 63. Interview with Anne Emerman, November 8, 1997. 64. Because on October 27, 1999, the U.S. House of Representatives passed a bill that would make prescribing lethal drugs for terminally-ill patients a federal crime, elected Oregon officials considered a legal challenge that could bring the issue to the U.S. Supreme Court. See Robert Pear, "House Backs Ban on Using Medicine To Aid in Suicide," New York Times, AI, A29; and Sam Howe Verhovek, "Oregon Considers Challenge," New York Times, October 28, 1999, A29. 65. Summary of the warning posed by Herbert Hendin-author of Seduced by Death: Doctors, Patients and the Dutch Cure (New York: W. W. Norton, 1996)-from Charles E. Rosenberg's "Slippery Slope," New York Times, Sunday, November 24, 1996, sec. 7, P. 33. In "Kevorkian on Trial," Psychiatric Times, February 1999, 16(2), Hendin related the "slippery slope" danger to Kevorkian's euthanasia of Thomas Youk. 66. Coleman, letter to Not Dead Yet Members and Supporters, January 25, 1999. References to Compassion In Dying from this source. 67. Diane Coleman, testimony before the Constitution Subcommittee of the House Judiciary Com- mittee, July 14, 1998. 68. Interview with Diane Coleman, March II, 1999. 69. Coleman's 1998 Congressional testimony. 70. Humphry and Clement, Freedom to Die, 313. 71. Coleman's 1998 Congressional testimony. 72. Editorial, New York Times, February 27, 1999. References to this comparison from this source. 73. Joseph Shapiro, "Casting a Cold Eye on 'Death with Dignity," U.S. News & World Report, March I, 1999, 56. References to Shapiro's discussion of the 1999 Oregon report from this source. Shapiro quoted Kathleen Foley. 74. Unless otherwise indicated, discussion of legalizing disability discrimination from Diane Cole- man's July 14, 1998, testimony before the Constitution Subcommittee of the House Judiciary Committee. 75. 42 USC 12101 (a)(7); emphasis added. 76. Interview with Coleman, March II, 1999. 77. Ezekiel Emanuel, "Whose Right To Die?" Atlantic Monthly, March 1997, 73-79. Emanuel's references to the danger of the legalization of physician-assisted suicide for vulnerable populations from this source. 78. David E. Rosenbaum, "Americans Want a Right To Die or So They Think," New York Times, Sunday, June 8, 1997, sec. 4, p. 3. "The better off financially and the better educated the more likely [people] were to favor legal assisted suicide," Rosenbaum noted. NOTES TO CHAPTER NINE 247 79. Emanuel discusses the effect of budgetary pressures on decisions regarding physician-assisted suicide. Both Dr. Kathleen Foley and Dr. Joanne Lynn (editor of Handbook for Mortals: Guidance for People Facing Serious Illness [New York: Oxford University Press, 1999]) stated on "The Open Mind" (PBS-TV, aired November II, 1998, and March 3, 1999) that these demographics will forge a cultural shift in attitudes toward death and dying. As Lynn indicated, two generations ago people died suddenly, but now they tend to "die by inches." 80. Rosenbaum, "Americans Want a Right to Die," 3. References to Michael J. Sandel from this source. 81. Wilkes, "The Next Pro-Lifers," 26. 82. Coleman's 1998 congressional testimony. 83. Rosenbaum, "Americans Want a Right to Die," 3. 84. Nancy Rolnick, "The Right to Live/The Right To Die," New York Able, December 1995, 12, I9. References to Rolnick from this source. 85. References to the Latimer case from "Murder of Disabled Daughter Draws I-year Sentence," Ragged Edge, January/February, 1998, 5. Bioethicist Adrienne Asch at a December 5, 1997, Disabilities Studies Colloquium at New York City's Hunter College School of Social Work stated, "A father killing his twelve- year-old daughter is neither personal assistance services nor physician-assisted suicide; we have other words for that." 86. Mary Jane Owen, "The Elizabeth Bouvia Suicide Case: Is Psychiatry Only for Able-Bodied?" The Detroit News, February 6, 1984, sec. A, P. II. 87. While Joseph P. Shapiro in No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), 274, indicated that in 1988 Bouvia was wishing for death, Richard B. Treanor in We Overcame: The Story of Civil Rights for Disabled People (Falls Church, Va.: Regal Direct Publishing, 1993), 264, stated that she was a happy person in 1988. 88. Mary Jane Owen, "We're Cowards to Think This Suicide Is Right," The Washington Post, February 12, 1984, Bos (in "Sunday Outlook"). 89. Mary Johnson, "Life and Death: Unanswered Questions," The Ragged Edge (Louisville: The Advocado Press, 1994), 187-93. References to comments on this case by Kenneth Bergstedt and Edward Roberts from this source. 90. "Around the Nation," Incitement, July 1992, 8(2): 15. In chapter 9 of No Pity, Joseph Shapiro offers a thorough discussion of this case. 9I. Republic Bank funded these yearly awards ceremonies honoring two or three students for their accomplishments, as well as several adults, who have served the disability community in New York City. 92. Frank Bowe, "Handicapping America: Barriers to Disabled People," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University, 1979), 90. 93. Michael White and John Gribbin, Stephen Hawking: A Life in Science (New York: Penguin Books, 1993), 15. White and Gribbin quoted from Dennis Overbye's Lonely Hearts of the Cosmos (New York: Little Brown, 1999). 94. A Brief History of Time, 84 min., 1992, Paramount Pictures Corporation. Comments of Hawking's colleague from this source. 95. Howard B. Hain, quoting Stephen Nachtheim, in "Light Years Ahead: One-on-One with Stephen Hawking," We, October 1997, 14. 96. Malcolm W. Browne, "A Bet on a Cosmic Scale and a Concession, Sort Of," New York Times, February 12, 1997, AI, A22. 97. Hain, "Light Years Ahead," 14, quoting Hawking. 98. Diane Coleman's mention of "Final Exit" is a reference to Derek Humphry's bestseller, the right- to-die movement's call to arms, Final Exit (Eugene, Ore.: Hemlock Society, 1991). Chapter Nine I. Richard B. Treanor in We Overcame: The Story of Civil Rights for Disabled People (Falls Church, Va.: Regal Direct Publishing, 1993), 122, quoted Steven A. Holmes, New York Times, March 18, 1990. Holmes 248 NOTES TO CHAPTER NINE described technological innovations for "people with severe handicaps." Some discussion of the impact of technology on veterans is included in chapter IO. 2. Wolfgang Saxon, Obituaries, "Ronald L. Mace, 58, Designer of Buildings Accessible to All," New York Times, July 13, 1998, B9. References to Mace-who was instrumental in the passage of the 1988 Fair Housing Amendments Act and the 1990 ADA-from this source. 3. Definition of universal design (memorandum by Scott Shanklin-Peterson, senior deputy chairman of the National Endowment for the Arts) from an accessibility project initiated in September 1997 at The Millay Colony for the Arts. 4. Ralf Hotchkiss is quoted in Report on the "American Creativity at Risk" Symposium, Rhode Island, November 1996, 16. 5. Description of universal design from Beyond Access, a film about the Millay Colony for the Arts. 6. From material distributed-by the Center for Universal Design at North Carolina State University- at the June 19-20, 1998, New York City conference. See also Jim Davis, "Design for the 21st Century Starts Now," Ragged Edge, November/December 1998, IO-14; and Jim Davis, "Developing an Accessible Penn Station," New York Able, March 1998, 3, 16. 7. Frank Bowe, "Handicapping America: Barriers to Disabled People," Disability: Our Challenge, John P. Hourihan, ed. (New York: Teachers College, Columbia University, 1979), 91. 8. Editorial, New York Times, November 13, 1992. 9. Peter Hellman, "Toilet Wars," New York magazine, May 3, 1993, 38-43. IO. "20/20," ABC-TV, March 12, 1993. II. Philip K. Howard, The Death of Common Sense: How Law is Suffocating America (New York: Random House, 1994), 116-17. Howard's references to the New York City street toilet issue from this source. I2. A German company placed one of its accessible street toilets near City Hall in Manhattan for about six months in 1995. Although this experiment complied with the ADA, the company did not contract with New York City to set up street toilets throughout the five boroughs. 13. References to Bravin v. Mount Sinai Medical Center, 1999, (S.D.N.Y.) from Barbara Stewart, "Judge Finds Bias at Hospital in Dealings with Deaf Man," New York Times, April 17, 1999, B4. Stewart quoted the Bravins' lawyer. Just as interpreters are required for people who speak foreign languages, the ADA mandates sign language interpreters for deaf people in hospitals. Disability advocates have suggested that hospitals and private doctors should have access to a service providing a pool of sign language interpreters. 14. References to this grant from information provided by Eileen Healy, president of the board of CIDNY; Marilyn Saviola, executive director of CIDNY; and Gerry Zuzze, CIDNY coordinator of Outreach and Training. 15. The exact number of major cities with accessible taxis is difficult to determine because they are springing up continually. The June 29, 2000, proposal by New York City Taxi and Limousine Commissioner Diane Magrath McKechnie states that as of July I, 2001, all vehicles purchased for use as yellow taxis must be accessible to people with disabilities, including wheelchair users. By July I, 2001, the livery services provided to wheelchair users must be equivalent to the services available to others. Taxi and livery companies are exempted from this requirement if they offer an alternative accepted by the Taxi and Limousine Commission. From Taxi and Limousine Commission hearing, June 29, 2000. 16. According to deaf advocate Martin Leff, the reason it took so long for the TTY to be used in great numbers was "sleepy people and no money. Business woke up when it saw the financial potential. By 2000, approximately two million TTYs have been sold at an average price of two hundred dollars each." 17. Howard, The Death of Common Sense, 5. Howard's discussion of the incident is incomplete. The New York City Department of Buildings and the Missionaries of Charity accepted a compromise: the elevator, paid for by the city, would go only to the second floor, where all necessary services for homeless people who could not negotiate steps would be provided. 18. As Anne Emerman-the director of the Mayor's Office for People with Disabilities at that time- revealed in a August 17, 1997, interview, Mother Teresa's Missionaries of Charity stated their reason for leaving New York City in a letter to Emerman. I9. Usually, it is easier to attain compliance in Title II ADA issues like curb cuts than Title III ADA issues like One-Step. In the former, it is necessary to deal with one municipal agency whereas in the latter, it NOTES TO CHAPTER NINE 249 is necessary to deal with each individual entity, one by one. Richard Connette-winner of the first Richard Gelman award conferred on an individual who has made a major contribution benefiting the disability population in New York State-reorganized the One-Step Campaign in New York City in 1994. 20. Ralf D. Hotchkiss, "Ground Swell on Wheels," The Sciences (July/August 1993), 16. 2I. Unless otherwise indicated, references to wheelchair technology and the work of Ralf D. Hotchkiss is based on an interview with Hotchkiss and his wife, Deborah Kaplan, an attorney formerly at World Institute on Disability, aired in 1993 on "Disabled In Action Speaks," WBAI-FM. 22. Ralf Hotchkiss is quoted in "Pioneering Mobility," Graduating Engineer (December 1994), 31. The need for a new approach to wheelchairs and scooters even in the United States is evident to most mobility- impaired drivers since they can much more easily get their cars repaired than their wheelchairs or scooters. 23. More appropriate for most quadriplegics than computerized walking stimulators, motorized wheelchairs are required by many in this population. 24. Andrew Wyeth, "Christina's World," exhibited at the Museum of Modern Art in New York City since 1973. 25. John Hockenberry, Moving Violations: War Zones, Wheelchairs, and Declarations of Independence (New York: Hyperion, 1995). Spoke Man was presented at the American Place Theater in New York City, from February 2I to March 24, 1996. 26. References to Ira Colchin from Walter H. Waggoner, "Blind Are Trained to Read Instruments in Newark Program," New York Times, Sunday, December 18, 1977, sec. II, PP. 12-13, and to William Skawinski from interview, June I9, 2000. References to multiple chemical sensitivity from Ben Van Wagner, "Science for People with Disabilities-President's Column," Science Is for Everyone, Fall 1995, I-2. 27. Hofstra professor Frank Bowe, who is deaf and a disability advocate, uses similar terminology to indicate the remarkable benefits of technology to people with sensory impairments. The Kurzweil reader changes print on paper to speech while the voice synthesizer changes print on the computer screen to speech. 28. Dolores King, "Changing Attitudes," Disabled In Action Activist, Spring 1999. 29. References to the computer as an accommodation for autism and comments of Temple Grandin from Harvey Blume, "Autism & the Internet" http://www.media-in-transition.mit.edu/arricles/blume. html, IO-II. 30. Temple Grandin, Thinking in Pictures: And Other Reports from My Life with Autism (New York: Vintage, 1996). 3I. In order for Dragon Dictate to work properly, not only must the individual learn the appropriate computer commands, but also the computer must become familiar with the individual's voice patterns, vocabulary, and phrasing. 32. The increased use of computers, especially since the mid-1980s, has resulted in a growing number of professionals with disorders that were formerly associated only with blue-collar workers-for example, repetitive strain injuries such as carpal tunnel syndrome and tendinitis (from interview with Michael 1997). McCann, Ph.D., board member of the New York Committee on Occupational Safety and Health, April 23, 33. Bruce Felton, "Technologies That Enable the Disabled," New York Times, Sunday, September 14, 1997, sec. 3, p. II. 34. "In Virtual Reality, Tools for the Disabled," New York Times, April 13, 1994, Cr, C6. 35. References to Judy Brewer, the May 1998 New Orleans Conference of the President's Council on Employment of People with Disabilities, Paul Schrader, and the cost of add-on computer technology, from "Talk of the Nation, Science Friday," National Public Radio, May 8, 1998. Although "people with disabilities are perhaps the single segment of society with the most to gain from the new technologies of the electronic age only one-quarter of people with disabilities own computers, and only one- tenth ever make use of the internet." H. Stephen Kaye, "Computer and Internet Use among People with Disabilities," Disability Statistics Center: Report I3, March 2000 http://www.dsc.uscf.edu. Kaye says the reason for the problem is that many people with disabilities are poor, and so they cannot afford the kind of computer they need, the specialized software to make it accessible to them, and the monthly charges of an internet service provider. 36. One of the services provided by the American Foundation for the Blind is the evaluation of 250 NOTES TO CHAPTER NINE assistive technology for blind people. The National Federation of the Blind filed an ADA lawsuit in Boston Federal District Court against America Online for failing to provide blind people with accessible services compatible with "screen access programs that convert text into synthesized speech or Braille" (Pamela Mendels, "Advocates for Blind, in Suit, Say AOL Impedes Access to Internet," New York Times, November 5, 1999, A25). 37. Peter D. Kramer, Listening to Prozac (New York: Viking, 1993). In "New and Old Depression Drugs Are Found Equal," Erica Goode reports that a new government study revealed that "Prozac and other drugs of its generation are not any better-or any worse-than older compounds in treating major depression" (New York Times, March 19, 1999, Ar). 38. Peter D. Kramer, Should You Leave (New York: Simon & Schuster, 1997). Kramer begins chapter IO with this observation. 39. Peter R. Breggin, Toxic Psychiatry (New York: St. Martin's Press, 1991). Dr. Sherwin B. Nulands is concerned about the assumption of "a psychopharmacological fantasy that, in the name of science, offers simple, painless self-transformation if you take the right pill" ("The Pill of Pills," New York Review of Books, June 9, 1994, 4). 40. Barbara Strauch, "Use of Antidepression Medicine for Young Patients Has Soared," New York Times, Sunday, August IO, 1997, AI, 24. References to Dr. Leon Eisenberg from this source. The Journal of the American Medical Association reported that between 1991 and 1995, the number of teenagers taking antidepressants doubled and the number of two- to four-year-old children taking some form of Ritalin (a psychostimulant used to treat children with Attention Deficit Hyperactivity Disorder) tripled ("Nightline," ABC-TV News, February 24, 2000). 41. "All Things Considered," National Public Radio News, May 26, 1998. 42. References to experiments with drugs that provoke psychotic symptoms from Philip J. Hilts, "Psychiatric Researchers Under Fire." New York Times, May 19, 1998, FI, F5. On January 19, 1999, Lynda Richardson ("New Rules Proposed for Medical Experiments on Mentally Ill," New York Times, B4) reported that "a [New York State] advisory panel had proposed new rules that would allow medical experiments involving some risk to be performed on mentally ill patients and others incapable of giving consent." 43. References to Peter Weiden, author of Conquering Schizophrenia: A Father, His Son, and a Medical Breakthrough (New York: Knopf, 1998), from New York and Company, WNYC-AM, February IO, 1998. 44. Marvin Spieler, "A Car Ride to Hell," New York City Voices: A Consumer Journal for Mental Health Advocacy, July/August 1999, 14. 45. Interview with Samuel W. Anderson, Ph.D., Associate Research Scientist, Columbia University and Director of Communication Sciences Laboratory, New York Psychiatric Institute, August 13, 1997. 46. Interview with audiologist Dr. Ernest Zelnick, Ph.D., December 23, 1997. Zelnick points out that cochlear implants are appropriate only for the small population for whom even the extremely sensitive and programmable digital hearing aids are ineffective. He adds that digital hearing aids are far more effective, though considerably more expensive, than the older technology-analogue or linear hearing aids. 47. Dr. Randolph Mallory, "On the Line," WNYC-AM, July 23, 1997. In their study, Mario Svirsky and his colleagues at Indiana School of Medicine at Indianapolis discovered that the language proficiency of children who received cochlear implants developed at a rate similar to that of hearing children. The National Association for the Deaf (NAD) is reassessing its skeptical view of cochlear implants. References to Svirsky and the NAD from http://www.abcnews.com, March 2, 2000. 48. Statistics provided by the League for the Hard of Hearing in New York City. 49. Natalie Angier, "Joined for Life, and Living Life to the Full," New York Times, December 23, 1997, F5. References to Dr. Alan Fleischman from this source. 50. One of the coauthors provided Nat Hentoff-who has written articles on the Baby Jane Doe case- with a copy of the amicus brief filed on the side of the government by several disability rights organizations. Significant Hentoff articles on the subject appeared in the Village Voice of January 3 and January IO, 1984. See also Gregory E. Pence, Classic Cases in Medical Ethics (New York: McGraw Hill, 2000), chap. 8. 5I. References to Dixie Lawrence's parent-directed therapy for Down syndrome from "ABC News Nightline," December 20, 1996. 52. References to transplants from Sheryl Gay Stolberg, "Live and Let Die Over Transplants," New NOTES TO CHAPTER NINE 25I York Times, Sunday, April 5, 1998, sec. 4, p. 3. The question of who should get preference in receiving "the nation's scarcest medical resource," human organs, continues to be a controversial issue as the country moves toward a policy in which "organs are shared broadly across regional lines, with sickest patients being given first priority" (Sheryl Gay Stolberg, "Agreement on Plan to Revamp Organ Distribution," New York Times, November 12, 1999, AI, A31). 53. Spina bifida means "open spine" in Latin. Once amniocentesis became routine for high-risk pregnant women, only economically deprived pregnant women gave birth to babies with spina bifida. As a result, the racial and ethnic profile of babies with spina bifida altered dramatically, and funding for the Spina Bifida Association declined precipitously. 54. Interview with Susan Scheer, July 26, 1997. References to Scheer and "the miracle baby" from this source. 55. Milt Freudenheim, "Corporate-Paid Psychotherapy: At What Price?" New York Times, April 12, 1994, D2. The article is appropriately subtitled, "Therapy Isn't Quantifiable." References to Dr. Harold Eist from this source. 56. "Morning Edition," National Public Radio, March 4, 1997. References to Larry Gostin and Robert Gelman from this source. 57. Gina Kolata, "Advent of Testing for Breast Cancer Genes Leads to Fears of Disclosure and Discrimination," New York Times, February 4, 1997, CI, C3. The new rules that President Clinton announced to ensure the privacy of personal medical records initiated a vigorous debate involving physicians, health care providers, insurance companies, and HMOs (Robert Pear, "Rules on Privacy of Patient Data Stir Hot Debate," New York Times, October 30, 1999, AI, Aro). 58. Gina Kolata, "Biology's Big Project Turns into Challenge for Computer Experts," New York Times, June II, 1996, CI. Two teams have been competing in a race to decode the human genome: one the public consortium that wishes to make information freely available and the other a private company, Celera, seeking "enough proprietary safeguards to make a profit" (Nicholas Wade, "Genome Decoding Plan Is Derailed by Conflict," New York Times, March 9, 2000, A20). On June 19, 2000, the two teams jointly announced that they have mapped a rough draft of the human genome. University of Pennsylvania professor Arthur Kaplan notes that bioethicists are concerned that DNA information could be secured without an individual's knowledge and that tests and drugs resulting from genetic mapping may not be affordable by a significant number of people (CNN News, June 19, 2000). 59. Interview with Jeremy Rifkin regarding The Biotech Century: Harnessing the Gene and Remaking the World (New York: J. P. Tarcher, 1999), Pacifica Radio Archives. In this book Rifkin considered the potentially dangerous consequences of granting any institution or group the authority to redesign the planet's genetic blueprint. 60. Adrienne Asch, "The Human Genome and Disability Rights," The Disability Rag and ReSource, January/February 1994, I2. 61. "The Newshour with Jim Lehrer," Public Broadcasting System, January I, 1997. References to Patricia King from this source. 62. Kolata, "Advent of Testing for Breast Cancer Gene," CI. References to discrimination based on genetic tests from this source. Although Dr. Susan Love does not consider prophylactic mastectomy good medical procedure, Denise Grady of the New York Times reported in opposition on January 14, 1999, in "Removal of Healthy Breasts Is Found to Cut Cancer Risk" (p. AI). 63. See David L. Wheeler, "Scientists Worry about the Implications of Genetic Testing for Inherited Disease," Nancy R. MacKenzie, ed. Science and Technology Today (New York: St. Martin's Press, 1995), 324. Hoping his policy would be replicated by the private sector, President Clinton prohibited "the misuse of genetic tests to discriminate against any American" by federal agencies ("President Acts to Bar Genetic Discrimination," Associated Press, New York Times web site http://www.nytimes.com, February 8, 2000). 64. References to DNA patenting from "Weekend Edition," National Public Radio, June 23, 1996. 65. "On the Line," April 16, 1997, WNYC-AM, interview with Karen Stabiner, who referred to Susan Love's terminology. 66. Stated by Stabiner, "On the Line," April 16, 1997. References to the "potential paradigm shift" in breast cancer treatment from this source. Nicholas Wade ("Scientists Cultivate Cells at Root of Human 252 NOTES TO CHAPTER NINE Life," New York Times, November 6, 1998, AI) reported that researchers hope to "introduce genes into the body to remedy inherited disease." Other researchers-such as biologist Sandra Steingraber, author of Living Downstream: A Scientist's Personal Investigation of Cancer and the Environment (New York: Vintage Books, 1998)-stress environmental toxins rather than genetic predisposition as the major cause of cancer. 67. Susan Bolotin in "Slash, Burn, and Poison" (review of Karen Stabiner's To Dance with the Devil: The New War on Breast Cancer [New York: Delacorte Press, 1997]), New York Times, Sunday, April 13, 1997, sec. 7, P. 8, quoted Stabiner. 68. "Premarin, an estrogen product is already the biggest-selling drug in the United States" (Susan Love, "Sometimes Mother Nature Knows Best," New York Times, March 20, 1997, A25). 69. "The American College of Obstetrics and Gynecology recommends that postmenopausal women be on 'replacement' hormones for the rest of their lives unless they have a compelling reason not to be" (Love, "Sometimes Mother Nature Knows Best," A25). This hormone replacement has been recommended to help women stave off osteoporosis, heart disease, and some discomforts of menopause, as well as possibly Alzheimer's disease (Alexis Jetter, "Should You Trust Her?" Health, July/August 1997, 104). 70. Love, "Sometimes Mother Nature Knows Best," A25. "In Drug Marketing Starts Legal Battle: Makers of Postmenopausal Products Clash with Regulators," Denise Grady reported, "Two drug companies seeking to tap the vast market of postmenopausal women at risk for breast cancer, heart disease and bone loss have clashed with each other and run afoul of the Food and Drug Administration over their marketing practices, prompting a flurry of lawsuits, government warning letters and accusations that inaccurate assertions could endanger women's health" (New York Times, Sunday, March 28, 1999, A28). 71. References to Dr. Christiane Northrup from Jetter, "Should You Trust Her?", 103-4. 72. Love, "Sometimes Mother Nature Knows Best," A25. In this article, Love refers to "Graham Colditz, one of the authors of the Nurse's Health Study [a definitive fourteen-year study of 120,000 nurses issued in 1995], who estimated that 90 percent of heart disease cases could be eliminated if people changed their life style; this means encouraging women to exercise, watch their diet, and quit smoking." Love believes that "a healthier life style" decreases not only the probability of heart disease in postmenopausal women, but also osteoporosis and breast cancer, "with less risk" than estrogen replacement ("On the Line," WNYC-AM, May 8, 1997). Love's and Northrup's skepticism has been supported by the results of "a huge federal study" indicating that estrogen replacement therapy-with or without progestin-for postmenopausal healthy women may result in increased probability for heart attacks, strokes, and blood clots" (Gina Kolata, "Estrogen Question Gets Tougher," New York Times, April 6, 2000, A22). 73. "Sunday Morning," May II, 1997. References to Fran Visco from this source. See also Sheryl Gay Stolberg, "Now, Prescribing Just What the Patient Ordered," New York Times, Sunday, August IO, 1997, sec. 4, P. 3, concerning how, with regard to women's health issues, feminism-together with the movement toward patient self-education and activism-countered medical paternalism and the cost-cutting excesses of managed care. 74. Stated by Stabiner, "On the Line," April 16, 1997. Stabiner offered another reason for the new militancy: "Gender bias played a terrific role in the sense that we weren't doing any research on women's disease until the early part of this decade. You have a lot of very angry women, and you have a lot of baby boomers, who grew up with social change and with this notion that they could do things that would affect the way the world worked" ("Sunday Morning," CBS Television, May II, 1997). 75. Steven Epstein, Impure Science (Berkeley: University of California Press, 1997). 76. Jeffrey Goldberg, in "Breakthrough," New York Times, Sunday, January 12, 1997, sec. 7, P. 16, described Epstein's work. 77. Frank Bruni, "Act-Up Doesn't Much, Anymore," New York Times, March 21, 1997, BT. 78. AIDS activists' guidance in producing new drugs, from Goldberg, "Breakthrough," 17. There were five dramatic Act-Up demonstrations from 1987 to 1992 at the following sites: two pharmaceutical companies, the Food and Drug Administration headquarters, the New York Stock Exchange, and the White House lawn (Bruni, "Act-Up Doesn't Much, Anymore," BI). 79. Christine Gorman, "The Disease Detective," Time, December 30, 1996/January 6, 1997, 62. 8o. Frank Rich, "Not If, But When," New York Times, August 3, 1996, 19, quoted Dr. Jerome Groopman. References to Groopman from this source. NOTES TO CHAPTER TEN 253 8I. Gorman, "The Disease Detective," 58. 82. Bruce G. Weniger and Max Essex, "Clearing the Way for an AIDS Vaccine," New York Times, January 4, 1997, A23. References to Weniger and Essex's criticism of the National Institutes of Health approach to the AIDS crisis from this source. 83. Lawrence K. Altman, "Some Scientists Are Hopeful Again for an AIDS Cure," New York Times, July I, 1998, AI9. Bob Jaffe, Director of State Affairs, Gay Mens' Health Crisis in New York City, indicated to authors on January 7, 1998, that in 1997 scientists discovered the latent reservoir of HIV in supposedly cured patients. 84. Altman, "Some Scientists Are Hopeful," AI9. 85. Dr. David Ho, "Too Much Pessimism on AIDS Therapies," New York Times, June 27, 1998, AIS. In a report released ahead of the Thirteenth International AIDS Conference (which began July 9, 2000), the United Nations projected that "about half of all I5-year-olds in the African countries worst affected by AIDS will eventually die of the disease even if the rates of infection drop substantially in the next few years And if infection rates remain high, the odds are that more than two-thirds of the 15-year-olds will die from AIDS in countries like Botswana." Lawrence K. Altman, "U.N. Warning AIDS Imperils Africa's Youth," New York Times, June 28, 2000, AI, AI2. 86. Lawrence K. Altman, "AIDS Meeting Ends with Little Hope of Breakthrough," New York Times, Sunday, July 5, 1998, AI, AII. References to the prohibitive cost of AIDS medication from this source. 87. "Morning Edition," National Public Radio, August 31, 1999. 88. Gabriel Rotello, "The Risk in a 'Cure' for AIDS," New York Times, I4 July 1996, sec. 4, P. 17; and Sexual Ecology: AIDS and the Destiny of Gay Men (New York: E. P. Dutton, 1997). 89. "National Public Radio News," March 30, 1998. Although in 1988 African Americans made up only I3 percent of the U.S. population, they accounted for 57 percent of all new infections of the virus that causes AIDS, and AIDS was the leading cause of death of African Americans between twenty-five and forty-four years of age (Sheryl Gay Stolberg, "Eyes Shut, Black America Is Being Ravaged by AIDS," New York Times, June 29, 1998, AI). AIDS in the United States has become "increasingly a disease of the poor and disadvantaged" (editorial, New York Times, Sunday, December 5, 1999, AI6). 90. See Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: Viking Penguin, 1988), an exposé of the political expediency and irresponsibility of members of the government, health, and science establishment during the early 1980s while AIDS was allowed to spread unchecked. 9I. Dinitia Smith, "Viewing AIDS Writing through Prism of Hope," New York Times, January 13, 1997, CII, Cr5. References to Literature in the Days of AIDS from this source. 92. Mammogram machines accessible to most women-like the Bennet Contour-Plus in Berkeley, California-have been produced, but they are few in number. See Dr. Debra Shabas, "Knowledge Is Empowerment: Breast Cancer Prevention for Women with Disabilities," We, September-October 1999, 47. Chapter Ten I. Howard A. Rusk, A World To Care For: The Autobiography of Howard A. Rusk, M.D. (New York: Random House, 1977), 89-90. References to Herb Klinefeld from this source. 2. "Wars & Scars: A Diamond Anniversary History of the Disabled American Veterans," DAV Magazine, July/August 1995, I-2. References to obstacles to securing services faced by World War I veterans from this source. 3. Frances A. Koestler, The Unseen Minority: A Social History of Blindness in America (New York: David McKay Company, 1976), 25I. References to the War Risk Insurance Act and the establishment of the U.S. Veterans Bureau in 1921 from this source. 4. Richard B. Treanor, We Overcame: The Story of Civil Rights for Disabled People (Falls Church, Va.: Regal Direct Publishing, 1993), II. Richard K. Scotch, From Goodwill to Civil Rights: Transforming Federal Disability Policy (Philadelphia: Temple University Press, 1984), 20. 5. "Wars & Scars," 2-4. Unless otherwise indicated, references to DAVWW from this source. 254 NOTES TO CHAPTER TEN 6. Treanor, We Overcame, I5. "Wars & Scars," IO. 7. Treanor, We Overcame, I5. 8. Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge: Cambridge University Press, 1987), 169. See also Koestler, The Unseen Minority, 259. 9. Koestler, The Unseen Minority, 260, refers to Public Law 78-16. IO. Rodman D. Griffin, "The Disabilities Act," CQ Researcher, December 27, 1991, IOOI. The Smith- Fess Vocational Rehabilitation Act covering civilians with disabilities was passed two years after the 1918 Smith-Sears Veterans Rehabilitation Act covering disabled veterans. Scotch, From Goodwill to Civil Rights, 20. II. Paraplegia News, September 1956, 4. Rusk, A World To Care For, 99. I2. Nora Groce, The U.S. Role in International Disability Activities: A History and a Look Toward the Future (Oakland, Calif.: International Disability Exchanges and Studies Project, 1992), I23-24. See also Henry H. Kessler, The Knife is Not Enough (New York: W. W. Norton, 1968). 13. Groce, The U.S. Role in International Disability Activities, 28. References to the Kessler's comprehensive approach to rehabilitation from this source. 14. Discussion of "the whole man" from Rusk, A World To Care For, 66. 15. Rusk, A World To Care For, 52. References to the Air Force Rehabilitation Center at Pawling, New York, from this source. 16. Rusk, A World To Care For, 43, 149. 17. Ibid., 77-78. 18. The institute was known first as The Red Cross Institute for Crippled and Disabled Men in 1917, then as the Institute for the Crippled and Disabled by 1919, and finally as the International Center for the Disabled by 1981, retaining the abbreviation ICD. I9. Rusk, A World To Care For, 48-49. 20. Ibid., 66. 2I. Paraplegia News, December 1950, 4-5. 22. Paraplegia News, August 1949, 3. References to the September 1947 anti-segregation PVA resolution from this source. 23. Paraplegia News, August 1946, I, and August 1949, 3. 24. Paraplegia News, October 1946, I, 3. PVA's goals from this source. 25. Paraplegia News, December 1950, 4. 26. Rusk, A World To Care For, 42-43. 27. Ibid., 76. Numbers of surviving paraplegics of World Wars I and II from this source. 28. Paraplegia News, April 1949, 3; April 1950, 4; June 1950, 4; March 1952, 4; August 1957, 8-9 and 12-13; and September 1961, 13. Although in the November 1946 Paraplegia News (p. I), automobiles for triplegics and quadriplegics were considered appropriate only for rehabilitation because they were regarded as unemployable, by the later 1940s this restrictive assumption was less prevalent in the newspaper. 29. Paraplegia News, March 1948, I. 30. Paraplegia News, August 1948, 5. 3I. Paraplegia News, March/April 1953, 3. 32. Paraplegia News, September 1950, 3. 33. Paraplegia News, November 1946, I. Mobility-impaired veterans were also granted the cost of outfitting their cars with hand controls. 34. Paraplegia News, October 1946, 3. 35. Automatic transmission was introduced by General Motors as an option in the 1940 Oldsmobile (Guinness Book of Car Facts and Feats [Middlesex, England: Guinness Superlatives Limited, 1980], 252). This technology, however, was not commonplace in cars until over five years later. 36. Advertisements for different models of hand controls appeared in Paraplegia News throughout the late 1940s and the 1950s. 37. Paraplegia News, April 1950, 4. 38. Advertisements for the following appeared in Paraplegia News: the Hoyer Kartop-Lift in April 1959, the hydraulic lift in June 1961, and the portable ramp in February 1964. NOTES TO CHAPTER TEN 255 39. Paraplegia News, June 1961, I2. 40. Groce, The U.S. Role in International Disability Activities, 156-57. References to Henry Viscardi from this source. 41. For example, the failure of the administration of New York City Mayor John Lindsay in 1966 to limit the use of special parking permits by people with disabilities can be credited to the organized drivers with disabilities. 42. Wilber J. Scott, The Politics of Readjustment: Vietnam Veterans Since the War (Hawthorne, N.Y.: Aldine de Gruyter, 1993). Scott notes that the strategies and determination of the ostracized gay activists were instructive to veterans who became activists as a result of their experience in Vietnam. 43. Description of veterans bureaucracy from interview with Paul Camacho (Joiner Center for the Study of War and Social Consequences, University of Massachusetts, Boston), June I2, 1997. 44. Paul Camacho, "The Future of the Veterans' Lobby and Its Potential Impact for Social Policy," The American War in Vietnam, ed. Jayne Werner and David Hunt (Ithaca, N.Y.: Cornell University [Southeast Asia Program], 1993), 116-17. Efforts of Vietnam veterans to gain visibility from this source. 45. Interview with Paul Camacho, June 12, 1997. 46. Unless otherwise indicated, references to Gulf War-related disabilities from "America's Defense Monitor," Center for Defense Information, Program Number 634: "War May Be Hazardous To Your Health," (initial broadcast, Public Broadcasting System, May 9, 1993). 47. Tod Ensign described Citizen Soldier in interview, June 18, 1997. Ensign coauthored, with Michael Uhl, GI Guinea Pigs: How the Pentagon Exposed Our Troops to Dangers More Deadly Than War (New York: Wideview Books, 1980). 48. Philip Shenon, "Two Studies Seem To Back Veterans Who Trace Illnesses to Gulf War," New York Times, November 26, 1996, AI, A16. References to these studies from this source. 49. "Studies on Gulf War Illnesses Are Faulted," New York Times, Sunday, June IS, 1997, AI8. 50. Interview with Paul Sullivan, April 26, 1999. Sullivan's references to the complex and potentially lethal nature of Gulf War syndrome from this source. 5I. Steven Lee Myers, "Drug May Be Cause of Veterans Illnesses," New York Times, October 19, 1999, AI8. The chemical involved, pyridostigmine bromide, was used as a pretreatment for soman, a nerve agent that Iraq never used in the Gulf War. See also Steven Lee Myers, "Study of Ill Gulf War Veterans Points to Chemical Damage," New York Times, December I, 1999, AI8, for scientific study revealing "signs of brain damage" in Gulf War veterans "caused by exposure to toxic chemicals." 52. The National Gulf War Resource Center is a coalition of fifty-eight veterans and other groups involved in promoting health care for Gulf War veterans. Patricia Axelrod, military scientist who specializes in weapons systems analysis and winner of a MacArthur grant to do research on depleted uranium, insists that the term "depleted uranium" is an oxymoron, a convenient way for the Department of Defense to marginalize the toxic effects of what is called depleted uranium but is in reality Uranium 238. From Amy Goodman's interview with Patricia Axelrod, "Democracy Now," WBAI, May 30, 2000. 53. In his interview on May 5, 1999, Gary Pitts referred to the recent discovery by Howard Urenovitz at the University of California in Berkeley that chromosome 22 was damaged by exposure to toxins in half of the twenty-four Gulf War veterans that he examined while no such damage was evident in any of those in the control group. 54. Philip Shenon, "Chemical Arms in Gulf War: Medical Mystery and Credibility Crisis," New York Times, January 2, 1997, AI4. In 1989, when the Veterans Administration became a cabinet level agency, the name was changed to the Department of Veterans Affairs. 55. Even as late as January 20, 1999, "Frontline: The Last Battle of the Gulf War," aired on PBS-TV, suggested that evidence of Gulf War syndrome was inconclusive. "The program was primarily based on an interview with Stephen Joseph, Assistant Secretary for Health at the Department of Defense, whose poor handling of the Gulf War illness issue was cited in the press as the reason he is no longer at the Department," said Paul Sullivan in a May 18, 1999, interview in which he referred to "Thanks of a Grateful Nation," the 1998 cable television mini-series, as offering a valid, though popularized, account of the injustice done to Gulf War veterans. 56. Interview with Paul Sullivan, April 26, 1999. 256 NOTES TO CHAPTER TEN 57. Shenon, "Chemical Arms in Gulf War," A14. 58. Shenon, "Two Studies," AI6. 59. Unless otherwise indicated, references to Vietnam and World War II related disabilities and illnesses from "America's Defense Monitor," Program Number 634. For discussion of post-traumatic stress disorder, see Robert J. Lifton's Home From the War (New York: Basic Books, 1973). 60. William A. Buckingham, "Operation Ranch Hand: Herbicides in Southeast Asia, 1961-1971," posted October 18, 1997, http://cpcug.org/user/billb/ranchhand/ranchhand.html (Buckingham is author of Operation Ranch Hand: The Air Force and Herbicide in Southeast Asia, 1961-1971 [Washington, D.C.: U.S. Government Printing Office, 1982].) Not only has Dr. Joel E. Michalek, U.S. Air Force statistician for the Ranch Hand study, observed a persistent connection between diabetes and dioxin among Vietnam veterans, but also Dr. Michael Gough, chairperson of a federal advisory panel for this study from 1990-1995, said that he is certain that "diabetes will be turned into a compensable disease" for these veterans. Gina Kolata, "Agent Orange and Diabetes: Diving into Murky Depths," New York Times, March 30, 2000, A16. 61. Ensign is quoted in "America's Defense Monitor," Program Number 634. In Ok-Lee v. Dow Chemical Co. et. al.-a class action suit filed in U.S. District Court in Philadelphia (December 3, 1999)-more than one thousand American veterans who served in Korea in the late 1960s claim that defoliants such as Agent Orange have had a delayed toxic effect on them. 62. Interview with Dr. Steven Stellman, March 26, 1997. References to Dr. Steven Stellman and Dr. Jeanne Stellman, professor of public health at Columbia University, from this source. The Stellmans' work was drawn upon heavily by the National Academy of Sciences report on Agent Orange. 63. Dr. Steven Stellman added, "Although this coverup was whispered about for a long time, in 1991 New York City Congressman Ted Weiss held a series of oversight hearings resulting in documentation that implicated the Reagan White House in an attempt to conceal the facts. According to the House Report, when Ed Meese was the Attorney General, he used the Domestic Policy Council as a political tool for delaying and suppressing research efforts into Agent Orange." 64. Unless otherwise indicated, references to "atomic guinea pigs" from "America's Defense Monitor," Program Number 634. 65. Michael D'Antonio, "Atomic Guinea Pigs," New York Times, August 31, 1997, Sunday, sec. 6, p. 38. References to Anthony Guarisco from this source. 66. See also Eileen Welsome, The Plutonium Files: America's Secret Medical Experiments in the Cold War (New York: Delacorte Press, 1999). 67. Interview with Sandra Marlow, June 23, 1997. 68. Sandra Marlow, "A Daughter's Story," The Bulletin of the Atomic Scientists, January 1983, 30. 69. "DAV Targets Aid to Vets Who Took Part in Nuclear Testing," New York Able, March 1997, 6. Reference to David W. Gorman from this source. 70. Interview with Dr. Martin Gensler, May 25, 1999. References to Gensler and his explanation for the denial of compensation to atomic vets from this source. The views expressed by Gensler do not necessarily reflect those of Senator Paul Wellstone. The Pentagon's October 21, 1999, reiteration of its claim that the cancer rate of atomic veterans did not differ significantly from other veterans who served during the same time period drew media attention as well as skepticism from atomic veteran supporters. 71. References to World War II chemical warfare tests from "America's Defense Monitor," Program Number 634. 72. Philip Shenon, "Pentagon Says Gulf War Data Seem To Be Lost," New York Times, December 5, 1996, AI, B18. References to the gaps in the logs from this source. 73. Philip Shenon, "Study Sharply Raises Estimate of Troops Exposed to Nerve Gas," New York Times, July 24, 1997, A18. 74. "On the Line," WNYC-AM, December 13, 1996. 75. Shenon, "Study Sharply Raises Estimate," AI8. Reference to James J. Tuite from this source. 76. "DAV Supports Easing Burden of Proof for Gulf War Vets," New York Able, March 1997, 3. References to extending time period for regulations governing proof of Gulf War-related illnesses from this source. 77. "On the Line," WNYC-AM, December 13, 1996. See Feres v. United States 340 U.S. 135 (1950). 78. Interview with Tod Ensign, June 18, 1997. NOTES TO CHAPTER ELEVEN 257 79. Dennis Bernstein, "Gulf War Syndrome Coverup," Covert Action Quarterly, No. 53, Summer 1995, 9. Unless otherwise indicated, references to Coleman v. Alcolac from this source. 8o. Interview with Gary Pitts, one of the attorneys for the plaintiffs, May 5, 1999. References to Pitts and foreign companies that are defendants in Marshall Coleman et al. v. ABB Lymus Crest Inc. et al. from this source. Pitts indicates that companies use subsidiaries in a "shell game" in order to hide what they have done. 81. References to attorney Frank Spagnoletti from Newsletter of the Gulf War Veterans of Massachusetts, December 17, 1997, I(3): 3. 82. In a case of life imitating art, the story of Admiral Elmo Zumwalt II is reminiscent of the plot of Arthur Miller's play, All My Sons. 83. Although following the Gulf War the Chemical Weapons Convention prohibited the sale of dangerous chemicals, Pitts explained (in his interview of May 5, 1999) that companies can get around this prohibition by selling two or more benign chemicals that form a lethal compound when combined. 84. Interview with Paul Sullivan, April 26, 1999. References to the 1998 Persian Gulf War Veterans Act (PL 105-277) from this source. This act followed on the heels of a similar 1994 Act (PL 103-446), which veterans groups had almost written off as ineffective. 85. When many variables prevent statistically establishing cause and effect with regard to, for example, Gulf War syndrome, the phenomenon is referred to as "confounding." 86. Interview with Paul Sullivan, April 26, 1999. As Representative Christopher Shays (R-Conn.) stated (March 4, 1999), because military men and women have become "understandably distrustful of the Pentagon on medical matters," some have resisted mandatory anthrax vaccinations jeopardizing "their military careers and even their liberty." As a result, Representative Benjamin Gilman (R-N.Y.) and others introduced (on July 19, 1999) HR 2548, a bill to suspend further implementation of the Department of Defense anthrax vaccination program. Chapter Eleven I. John Gliedman and William Roth, The Unexpected Minority: Handicapped Children in America (New York: Harcourt Brace Jovanovich, 1980), 173. 2. Pennsylvania Association for Retarded Children v. Pennsylvania, 344 F. Supp. I257 (E.D. Pa. 1971) and 343 F. Supp. 279 (E.D. Pa. 1972) from Christopher G. Bell and Robert L. Burgdorf, Accommodating the Spectrum of Individual Abilities (Washington, D.C.: U.S. Commission on Civil Rights, 1983), 57. 3. References to Mills v. Board of Education of the District of Columbia, 348 F. Supp. 866 (D. D.C. 1972) from Gliédman and Roth, The Unexpected Minority, 176-77. 4. Bell and Burgdorf, Accommodating the Spectrum, 59. 5. Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge: Cambridge University Press, 1987), 207. 6. Gliedman and Roth, The Unexpected Minority, 466, note I. 7. Bell and Burgdorf, Accommodating the Spectrum, 27, footnote 73. 8. Ibid., 57. 9. "The One and a Half Million Dollar Goof," Disabled People Speak to Medical People, February 1990, 20. IO. Gliedman and Roth, The Unexpected Minority, 174. II. Bell and Burgdorf, Accommodating the Spectrum, 57-58. I2. Gliedman and Roth, The Unexpected Minority, 179, 467 (note 10). 13. Bell and Burgdorf, Accommodating the Spectrum, 57. 14. Gliedman and Roth, The Unexpected Minority, 466, note 4. I5. Interview with Rims Barber, May 28, 1999. Unless otherwise indicated, references to the 1979 Mississippi consent decree from this source. 16. Gene I. Maeroff, "Suit Spurring Mississippi Efforts To Teach Handicapped Children," New York Times, April 5, 1979, AI3. Comparison between mainstreaming children with disabilities in Mississippi and New York City from this source. 258 NOTES TO CHAPTER ELEVEN 17. References to the Jose P. lawsuit from Jose P. v. Board of Education, 79 C 270, December 14, 1979, 2-6. 18. After assessing the child's present level of education, the IEP establishes annual goals, special education and related services to be provided, and projected dates for and anticipated duration of services, as well as objective criteria and evaluation procedures and schedules appropriate for the child (Gliedman and Roth, The Unexpected Minority, 182-83). 19. The authors arrived at these estimates by calculations based on the population of the United States, approximately 225 million, and the population of New York City, about 7 million. The authors also included in their calculations estimates of the number of children with severe disabilities nationwide that required identification, around I million, and the total number of children with disabilities nationwide, roughly 8 million. 20. Interview with John C. Gray, May 16, 1997. References to Gray from this source. 2I. The Jose P. judgment of December 13, 1979, mandated that the language requirements for this population be consistent with the consent decree in Aspira of New York, Inc. v. Board of Education. 22. Bell and Burgdorf, Accommodating the Spectrum, 58. 23. Gliedman and Roth, The Unexpected Minority, 218. 24. Interview with Mary Somoza, July 29, 1997. 25. Both the 1979 Jose P. education lawsuit and the 1980 Dopico transportation lawsuit were Brooklyn Legal Services cases. 26. Panel discussion on special education, New York City Bar Association, December 5, 1996. References to this panel discussion from this source. 27. Interview with attorney Diane Lipton, director of the Children with Disabilities and Families Advocacy Program for the Disability Rights Education and Defense Fund, July 31, 1997. 28. Interview with former New York City public school teacher, August I, 1997. The school to which she referred was on 96th Street and Park Avenue in Manhattan. 29. Disability Studies Colloquium, "Inclusion: The Challenge, the Opportunity," New York City Hunter College School of Social Work, December 5, 1997. Judith E. Heumann's reference to the resistance of some educators to "accepting the reality of disability" from this source. 30. Rather than "inclusion," Heumann favors the terms "desegregation" and "integration" because of the political connotations of the two latter words. 31. Interview with Diane Lipton, July 31, 1997. See Hendrick Hudson Central School District v. Rowley, IO2 S.Ct. 3034 (1982). Unless otherwise indicated, references to the Rowley case from the Lipton interview. 32. Mary Johnson, "Amy and the Supremes," Ragged Edge, May/June 1998, 29. 33. Johnson, "Amy and the Supremes," 29. Johnson is quoting from R. C. Smith, The Case About Amy: Health, Society and Policy (Philadelphia: Temple University Press, 1996). 34. A 1975 House Committee on Education and Labor Report quoted in Kipp Watson, "The Rowley Case: A Broken Promise," DIA Activist, January 1983, 8. 35. R. C. Smith, "An Audience for Amy," Ragged Edge, May/June 1998, 31. 36. Diane Lipton, "The 'Full Inclusion' Court Cases: 1989-1994," Presented at Wingspread Conference, Racine, Wisconsin, April 28 to May I, 1994, 2. 37. Ibid., 3. References to Roncker v. Walters, 700 F2d 1058 (6th Cir 1983) from this source. 38. Interview with Diane Lipton, July 31, 1997. See Daniel R. R. v. State Board of Education, 874 F2d 1036 (5th Cir 1989); Greer v. Rome School District, 950 F2d 688 (rith Cir 1991); Oberti v. Board of Education, 995 F2d 1204 (3d Cir 1993); and Sacramento City Unified School District v. Holland, 14 F3d 1398 (9th Cir 1994). References to these cases from interview with Diane Lipton. 39. Interview with Mary Somoza, July 28, 1997. President Clinton's letter to Anastasia as well as the description of the Somoza settlement with the New York City Board of Education from this source. 40. Interview with Barbara Zitcer, director of the Nursery School of the Young Men and Women's He- brew Association of North New Jersey, December 21, 1997. Zitcer observed that children identified as autistic began to be included with supports into her regular nursery school classrooms between 1994 and 1995. 41. Interview with Nicholas M., December 21, 1997. References to Nicholas M. and M.M. from this source. Catherine Maurice's Let Me Hear Your Voice: A Family's Triumph Over Autism (New York: Fawcett Books, 1994) profoundly impacted Nicholas M.'s response to autism. NOTES TO CHAPTER ELEVEN 259 42. In her book Targeting Autism: What We Know, Don't Know, and Can Do to Help Young Children with Autism and Related Disorders (Los Angeles: University of California Press, 1997), Shirley Cohen, professor of special education at Hunter College, referred to another technique that has been successful with some autistic children-Dr. Stanley I. Greenspan's emotionally-based approach, designed to re-ignite the autistic child's developmental processes. 43. Tamar Lewin, "Family Tests Law on the Meaning of Inclusion," New York Times, Sunday, December 28, 1997, sec. I, p. 20. References to Ashburn Elementary School officials and the Hartmanns' legal fees from this source. See Hartman v. Loudoun County Board of Education, 962809P (4th Cir 1997). 44. "The NewsHour with Jim Lehrer," Public Broadcasting System, March 24, 1998. Unless otherwise indicated, references to the Hartmann "inclusion" case from this source. 45. References to Cedar Rapids v. Garrett F. from Linda Greenhouse, "Court Says School Must Pay for Needs of Disabled Pupils," New York Times, March 4, 1999, I and 18. See Cedar Rapids School District v. Garret F., II9 S.Ct. 37 (1997). 46. Editorial, "The Special Education Nightmare," New York Times, June 24, 1996, A14. 47. Michael Winerip, "A Disabilities Program That 'Got Out of Hand," New York Times, April 8, 1994, B6. References to Dalton from this source. 48. Pam Belluck, "A Plan To Revamp Special Education," New York Times, November 26, 1996, AI. See Ann Colin, Willie: Raising and Loving a Child with Attention Deficit Disorder (New York: Viking Press, 1997). 49. Interview with Barbara Fisher, May 31, 1999. "Special education" has at least three different meanings: full-time segregated education, part-time segregated education, and education in the general classroom with supports. References to the difference between the stated intention of the Crew plan and the actual results from this source. 50. Panel Discussion on Special Education, New York City Bar Association, December 5, 1996. Unless otherwise indicated, references to concerns of advocates, parents, educators, and of attorney Roger Juan Maldanado, regarding special education in New York City from this source. 5I. Belluck, "A Plan To Revamp Special Education," B4. 52. Interview with DREDF attorney Diane Lipton, July 31, 1997. References to the Reauthorization of the IDEA from this source. 53. Jill Chaifetz, "Saving Special Ed: System Dooms Too Many Children, but There's a Chance to Fix It," New York Times, Sunday, May 30, 1999, sec. 14, P. 13. References to the State Regents Plan and Governor George Pataki's plan from this source. 54. Brent Staples, "Special Education Is Not a Scandal," New York Times, Sunday, September 21, 1997, sec. 6, PP. 64-65. References to Staples from this source. 55. Winerip, "A Disabilities Program That 'Got Out of Hand," B6. Winerip notes that the learning disability most often mentioned, dyslexia-in which the brain processes letters and symbols backwards- accounts for only a small portion of learning problems. 56. Brent Staples states, "Whole-language enthusiasts thought that children were naturally disposed to reading and writing and learned those skills just as they learned to speak." Unlike the phonics method, the whole-language method-emphasizing words and phrases as clusters of meaning independent of sounds- does not stress connecting letters to sounds, sounds to syllables, and syllables to words, and so forth. 57. Conversation with Edward Lewinson, Ph.D., December 5, 1996. Retired Seton Hall history professor Lewinson, blind from birth, received an excellent integrated public school education in Detroit in the 1930s and 1940s. Even before the passage of the IDEA, some schools mainstreamed children with disabilities who were able to function in an integrated setting. Mainstreaming tended to be most successful when parents were assertive advocates for their children. 58. "60 Minutes," CBS-TV, June 9, 1996. Remarks of commentator Leslie Stahl, as well as those of parents of both nondisabled and disabled children who appeared on this segment, "Special Ed," from this source. 59. Philip K. Howard, The Death of Common Sense: How Law is Suffocating America (New York: Random House, 1994), 151. 6o. Editorial, New York Times, June 24, 1996, A14. 61. Barbara Fisher and Richard Spiegel, "Diaspora: Special Education-NYC," DIA Activist, January 260 NOTES TO CHAPTER ELEVEN 1997, 8. In an interview on May 31, 1999, Fisher and Spiegel pointed out that because many teachers do not know how to deal with students with disabilities, an increasing number of "consultative teachers" should be provided on-site to train general classroom teachers by modeling teaching techniques appropriate for a wide spectrum of learning styles. 62. Editorial, New York Times, June 24, 1996, A14. 63. Lynda Richardson, "Minority Students Languish in Special Education System," New York Times, April 6, 1994, A2, B7. 64. Richardson, "Minority Students Languish," A2, B7. References to segregation and racial and ethnic stereotyping in New York City's special education program from this source. This article was still relevant in 2000. 65. Tamar Lewin, "Where All Doors Are Open For Disabled Students," New York Times, Sunday, December 28, 1997, sec. I, p. 20. References to the 1989 shift in special education in Vermont from this source. 66. Disability Studies Colloquium, New York City Hunter College School of Social Work, December 5, 1997. Reference to Judith E. Heumann's view that special education money should follow the student from this source. 67. Tamar Lewin, "Fictitious Learning-Disabled Student Is at Center of Lawsuit against College," New York Times, April 8, 1997, B9. Unless otherwise indicated, references to this lawsuit, attorney Larry Elswit, plaintiff Elizabeth Guckenberger, and services provided by Boston University for students with learning disabilities from this source. 68. Debra Ellen, "Taking the Case to Court," Connections, September 1996, 3(4): 3, II. References to Anne Schneider from this source. 69. Joseph P. Shapiro, "The Strange Case of Somnolent Samantha," U.S. News and World Report, April 14, 1997, P. 31. 70. Reference to the August 15, 1997, decision in Elizabeth Guckenberger v. Boston University, 957 F. Supp. 306 (D.C. Mass.) from disability rights attorney Frank Laski, Disability Rights Advocates of Oakland, and lawyers from the firm Clark, Hunt & Embry of Cambridge, Massachusetts, who represented the plaintiffs. A second Guckenberger decision, 974 F. Supp. I06 (D.C. Mass. 1997), further clarified the issue of "reasonable accommodation." By the time the lawsuit was decided, Jon Westling had become president of Boston University. 71. Shapiro, "The Strange Case of Somnolent Samantha," 3I. Statistics on the number of students with learning disabilities from this source. 72. Interview with Richard Spiegel, May 31, 1999. Unless otherwise indicated, references to Spiegel from this source. Spiegel indicates that techniques used in special education-students' preparation of portfolios and oral presentations, as well as their performance of job-related tasks-are valid educational strategies for all those in the general classroom. 73. Lewin, "Where All Doors Are Open For Disabled Students," sec. I, p. 20. 74. "Inclusion: It's Not All Academic," The Eric Review, Fall 1996, 4(3): 17. References to Barak Stussman from this source. 75. Disability Studies Colloquium, New York City Hunter College School of Social Work, December 5, 1997. Judith E. Heumann's references to the benefits of inclusion to both nondisabled students and students with disabilities from this source. Chapter Twelve I. Interview with Lex Frieden, July 16, 1997. 2. "Talk of the Nation, Science Friday," National Public Radio, May 8, 1998. 3. Cheryl Marie Wade, "It Ain't Exactly Sexy," The Ragged Edge (Louisville: The Advocado Press, 1994), 89-90. References to Wade from this source. 4. Barrett Shaw, "Introduction," The Ragged Edge, ed. Barrett Shaw (Louisville: The Advocado Press, 1994), xi. NOTES TO CHAPTER TWELVE 26I 5. Mary Jane Owen, "Like Squabbling Cubs," The Ragged Edge, ed. Barrett Shaw (Louisville: The Advocado Press, 1994), 7. References to Owens from this source. 6. Douglas Martin, "Disability Culture: Eager to Bite the Hand That Would Feed Them," New York Times, Sunday, June I, 1997, sec. 4, PP. I, 6. Unless otherwise indicated, references to Leslie Heller and Nadina LaSpina from this source. 7. Nadina LaSpina and Daniel Robert, "Pride and Identity," Ragged Edge, March/April 1998, 13. 8. Erik H. Erikson, Childhood and Society (New York: W. W. Norton, 1950), 268. 9. Leonard Kriegel, author of Flying Solo: Re-imagining Manhood, Courage and Loss (New York: Beacon Press, 1998), is an example of a person living a fulfilling and successful life with a disability, who has little or no involvement with disability politics. Having contracted polio at eleven years old, he does appear to feel a kinship with other writers with disabilities. Yet his positive sense of self and his creativity as a writer seem to stem from his capacity to mine his experiences as a person with a disability. IO. Martin, "Disability Culture," sec. 4, P. 6. II. LaSpina and Robert, "Pride and Identity," 3. 12. Interview with Daniel Robert, August 14, 1997. 13. Jean Stewart, The Body's Memory (New York: St. Martin's Press, 1989). In 1981, the International Year of Disabled Persons, Stewart-as program director of the Clearwater Great Hudson River Revival-received the go-ahead from Pete Seeger to create a fully accessible festival for people with all kinds of disabilities. The annual Clearwater Revival was one of the first outdoor festivals in the world to become accessible to the disability community and has continued to serve as a model for other such festivals. 14. Interview with Jean Stewart, January 12, 1998. Unless otherwise indicated, references to Stewart from this source. I5. Further information on people with disabilities in prisons is available in Jean Stewart's unpublished manuscript, Inside Abuse: Disability Oppression Behind Bars. 16. Interview with Marca Bristo, April 30, 1998. References to Bristo from this source. 17. Steven E. Brown, "We Are Who We Are So Who Are We?" Mainstream, August 1996, 3I. I8. Robert F. Murphy, The Body Silent (1987; reprint, New York: W. W. Norton, 1990). References to Murphy's treatment of disability as "a separate culture," as well as the "unmarked category" and "embattled identity" from Murphy, The Body Silent, 102-3. I9. Ibid., 160-61. 20. Cass Irvin, "Preface: Why We Do What We Do," The Ragged Edge (Louisville: The Advocado Press, 1994), xiv. 2I. Martin, "Disability Culture," sec. 4, p. 6. Quotations are Martin's paraphrase of Gill's remarks. 22. Carol Gill, "Questioning Continuum," The Ragged Edge (Louisville: The Advocado Press, 1994), 45. Unless otherwise indicated, references to Gill from this source. 23. John Hockenberry's discussion of disability as a cultural resource from his presentation at the International Center for the Disabled in New York City on March 18, 1998. The U.S. Court of Appeals in the Seventh and Ninth Circuits came to opposite conclusions in cases involving accommodations for professional golfers with disabilities. In Martin v. PGA, 204 F3d 994 (9th Cir 2000), the court held that golfer Casey Martin could use a golf cart in competition and that using such a vehicle did not alter tournament play. In Olinger v. U.S. Golf Association, 205 F3d IOOI (7th Cir 2000), however, the Seventh Circuit came to a different conclusion, ruling that the use of such a cart would fundamentally alter the nature of the tournament. The PGA has asked the U.S. Supreme Court to review the decision of the Ninth Circuit in light of the two interpretations of the ADA. It is also likely that golfer Ford Olinger will appeal to the Supreme Court on the Seventh Circuit ruling against him. See Marcia Chambers, "PGA Seeks a Review of Cart Suit," New York Times, July 4, 2000, D4. 24. Interview with Deborah Yanagisawa, April 29, 1998. References to Yanagisawa from this source. 25. Joan Tollifson, "Imperfection is a Beautiful Thing: On Disability and Meditation," Staring Back: The Disability Experience from the Inside Out, ed. Kenny Fries (New York: A Plume Book, 1997), IIO. 26. "Disability Studies," Ragged Edge, January/February 1998, I8. Reference to David Pfeiffer from this source. 27. Anthony Ramiriz, "Disability As a Field of Study?" New York Times, December 21, 1997, sec. 14, P. 8. References to Phyllis Rubenfeld from this source. 262 NOTES TO CHAPTER TWELVE 28. Definition of Disability Studies quoted in Paul Longmore, "The Second Phase: From Disability Rights to Disability Culture," The Disability Rag & ReSource, September/October 1995, 16(5): 4-II. 29. For Arthur Campbell Jr., the most frustrating and limiting aspect of his disability is his dif- ficulty making his speech understood. The weakness of the otherwise effective film is its failure to distinguish between the final personal depression of its protagonist and the state of the disability rights movement. 30. Mary Johnson, "Just One Man's Story, But It Speaks for Many," Sunday, New York Times, sec. 2, p. 23. 3I. Martin, "Disability Culture," sec. 4, P. I. 32. Lynn Manning, "The Magic Wand," ed. Kenny Fries, Staring Back: The Disability Experience from the Inside Out (New York: A Plume Book, 1997), 165. 33. Interview with Kitty Lunn, July 2, 1997. References to Lunn from this source. 34. "Sunday Morning," CBS-TV, May 23, 1999. References to Dana Tozer and the Cleveland Ballet Dancing Wheels from this source. Severe cerebral palsy has not prevented Daniel Keplinger (subject and writer of the 2000 Oscar winner for best documentary, King Gimp) from painting-"using a specially designed headpiece to hold a brush"-works that are "fierce, almost defiant, but also strangely beautiful" (Julie Solomon, "A Painter Happily Emerges from a Determined Battle," New York Times, Sunday, June 5, 2000, E5). 35. Interview with Lex Frieden, July 16, 1997. 36. Interview with Eunice Fiorito, June 6, 1997. References to Fiorito from this source. 37. Interview with Susan Scheer, July 26, 1997. References to Scheer from this source. By continuing to serve as attorney general while living with Parkinson's disease, Janet Reno is helping to change the public perception of disability. See Sheryl Gay Stolberg, "Reno Puts a Face on an Often Private Disease," New York Times, Sunday, August 15, 1999, A14. 38. James Weisman, "Myth & Media: Bigoted," The Disability Rag, September/October 1991. Weisman's criticism of the New York Times from this source. 39. Editorial, New York Times, November 18, 1979. 40. Editorial, New York Times, January 3, 1984. 41. Editorial, New York Times, September 6, 1989. 42. Editorial, New York Times, May 28, 1991. 43. Martin, "Disability Culture," sec. 4, p. I. 44. David W. Dunlap, "Architecture in the Age of Accessibility," New York Times, Sunday, June I, 1997, sec. 9, p. I. References to new architectural standards from this source. 45. Sara Riner, "New Needs for Retirement Complexes' Oldest," New York Times, March 23, 1998, AI. 46. Garry Pierre-Pierre, "Disrupting Sales at Greyhound, Disabled Protest Bus Access," New York Times, August 9, 1997, 26. 47. Lisa Bannon, "The Vision Thing: Mr. Magoo Watches U.S. Cultural History and Struggles to Adapt," Wall Street Journal, July 31, 1997, AI, A8. References to Mr. Magoo from this source. On July 2, 1997, the NFB urged the Disney organization to halt production of its live-action film, "Mr. Magoo," calling the stereotyped figure as offensive to blind people as Little Black Sambo and "Amos 'n Andy" are to black people. See Roxana Hegeman, "No More Mr. Magoo Say Blind Group," New York Daily News, July 3, 1997, 3. 48. Greg Gittrich, "Disabled Rip Bay Plaza Traffic Peril," New York Daily News, August 7, 1997, Metro sec., 2. 49. In Walter Goodman's September 9, 1997, New York Times review of "Dateline NBC," aired the same day, he condescendingly indicated that John Hockenberry's reference to his inability to enter the Ziegfeld Theatre or the new Armani store, because of their inaccessibility, trivialized the program. Also, Goodman stated, "the program presents evidence that a law [ADA] is being widely violated, at least in spirit." On the contrary, the program presented evidence that the law is being widely violated in fact, not just "in spirit." 50. When a renovation was required on the Brooklyn Bridge walkway in the 1980s, New York City considered building an inaccessible modification. Urged by bicyclists and joggers to insist on accessibility, Disabled In Action struggled to secure a walkway available to wheelchair users, bicyclists, and joggers. Early in August 1985, DIA members from Brooklyn and Manhattan met in the middle of the modified Brooklyn NOTES TO CHAPTER TWELVE 263 Bridge accessible promenade to toast with champagne the newly renovated walkway. See Maria Fugate, "Disabled Bridge Gap," New York Daily News, August IO, 1985. 51. Bruce Felton, "Technologies That Enable the Disabled," New York Times, Sunday, September 14, 1997, sec. 3, PP. I, IO, II. 52. David E. Rosenbaum, "Health Benefits Bill Shows Power of the Disabled," New York Times, June 7, 1999, AI, AI8. Reference to the "turnabout" in nineteen states from this source. 53. Interview with Lex Frieden, July 16, 1997. References to two major media events related to the ADA from this source. 54. Interviews with Charles Winston, director of the National Telability Media Center, August 16, 1997, and June 14, 1999. References to disability media, dial-in services, and the National Telability Media Center from this source. 55- Publisher and editor Angela Melledy founded New York Able, the only cross-disability newspaper in New York City, in June 1995. Mary Johnson, long-time editor of the Disability Rag, now editor of the Ragged Edge, and Lucy Gwin, editor of Mouth, are nationally-known disability activists. 56. Constance L. Hays, "Niche Magazines on Maladies Take a Peppier and Glossier Route," New York Times, June 9, 1997, D23. Reference to General Motors response to We from this source. The fact that We placed Jerry Lewis on its front cover in an issue (March/April 1999) lauding his Muscular Dystrophy telethons reveals that this publication stresses marketing rather than politics. For magazines devoted to disability politics, Lewis has been a representation of the unacceptable "charitable model." 57. Greg Smith's program emanates from Dayton, Ohio, and Bob Enteen's program from New York City. 58. Interview with Anne Emerman, August 17, 1997. References to Emerman from this source. 59. Interview with Eunice Fiorito, June 6, 1997. References to Fiorito from this source. 60. Interview with Paul Hearne, June 25, 1997. References to Hearne from this source. 61. Hearne is referring to medical practices such as the experiment conducted in Children's Hospital of Oklahoma, between 1977 and 1982, in which twenty-four spina bifida babies lost their lives. John R. Woodward, "It Can Happen Here," The Ragged Edge (Louisville: The Advocado Press, 1994), 230-35. 62. Interview with Marca Bristo, April 30, 1998. References to Bristo from this source. 63. Issued by Presidential Executive Order on March 13, 1998, the Task Force on Employment of Adults with Disabilities was recommended in the 1996 Achieving Independence, a publication of the NCD under Marca Bristo. 64. Interview with Susan Dooha, August 15, 1997. References to Dooha from this source. 65. These requirements for people with disabilities were listed in the "ADA Compliance Work Group Agenda," developed by the New York City Task Force on Medicaid Managed Care, February 18, 1997. 66. Interview with Lex Frieden, July 16, 1997. References to Frieden from this source. 67. Interview with Susan Scheer, July 26, 1997. References to Scheer from this source. 68. Frank Bowe, "An Overview Paper on Civil Rights Issues of Handicapped Americans: Public Policy Implications," Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: A Consultation Sponsored by the United States Commission on Civil Rights, May 13-14, 1980), II. Reference to transferring the legacy of the disability rights movement from this source. 69. Interview with Judith E. Heumann, January 16, 1998. References to Heumann from this source. 70. Marvin Wasserman, president of the New York City 504 Democratic Club-founded in 1983 and named after Section 504 of the Rehabilitation Act of 1973-refers to his political club as the only one in the country that focuses primarily on issues of people with disabilities. 71. The connection between disability and poverty is illustrated by homeless children who lack access "to vital preventive care and the management of chronic conditions." For example, "an astonishing 38 percent of the kids in the city's [New York] shelter system have asthma," a condition that is life- threatening for children. Even in its milder forms as a chronic condition, asthma adversely affects functioning in school. See Bob Herbert, "Children in Crisis," New York Times, June IO, 1999, A31. (Herbert quoted from a report by the president of the Children's Health Fund, Dr. Irwin Redlener.) 72. Douglas Martin, "A Victor Fears for the Future," New York Times, April 29, 1997, Br. 264 NOTES TO CHAPTER TWELVE 73. Interview with Emerman, April 30, 1997. Emerman's references to the future of the disability rights movement from this source. 74. Ralf Hotchkiss is quoted in Report on the "American Creativity at Risk" Symposium, Rhode Island, November 1996, 16. 75. "National Public Radio News," June 20, 1997. 76. Sheryl Gay Stolberg, "The Good Death: Embracing a Right to Die Well," New York Times, Sunday, June 29, 1997, sec. 4, P. 4. 77. Interview with Sherry Lampert, May IO, 1997. 78. Martin, "Disability Culture," sec. 4, p. 6. Index ABA. See Applied Behavioral Analysis Alexander v. Choate, 67 ABB Lumus Crest et al., Marshall Coleman et al. v., 182 Allen, Edgar F., 9-IO. See also National Easter Seal Abbott, Bragdon v., IO2 Society ACB. See American Council of the Blind ALS. See amyotrophic lateral sclerosis ACCD. See American Coalition of Citizens with Alter, Mark, 188, I94 Disabilities America Online, I57 n36 Access Board, 49, 56-57, 81, 90, 108 American Civil Liberties Union (ACLU), 72, 146 Access Living (of Chicago), 45 American Coalition of Citizens with Disabilities Accommodating the Spectrum of Individual Abilities (ACCD), 52-56 (Bell and Burgdorf), 46 n51 American Council of the Blind (ACB): and New Achieving Independence: The Challenge for the 21st York City subway gates, 22-23; contrasted to NFB, Century, 114 n20, I28 25-26; and Washington lobbying, 105 ACLU. See American Civil Liberties Union American Disabled for Attendant Programs Today ACRMD. See Association of Children with Retarded (formerly American Disabled for Accessible Mental Development Public Transit) (ADAPT), 66 n60, 82, I04-I05, 133 Act-Up. See AIDS Coalition To Unleash Power American Foundation for the Blind (AFB): and ADA. See Americans with Disabilities Act computer technology, 157; and leadership roles Adams, Brock, 56 for the blind, I5; and talking books, 19; and white ADAPT. See American Disabled for Attendant cane movement, 2I Programs Today (formerly American Disabled for American National Standards Institute (ANSI), 63 Accessible Public Transit) American Public Transit Association (APTA): ADAPT v. Burnley, 66n6o and Section 504 regulations, 65-66, 83, 85; and ADAPT et al. v. Dole, 68 Transbus controversy, 56-57 ADAPT v. Skinner, 68, 82. See also ADAPT v. Burnley American Sign Language (ASL): and academic AFB. See American Foundation for the Blind interest in, 18; as central to Deaf culture, 27-28; affirmative action, 24, 49, 58, 65, 67, 107, III-II2, 131 and criticism of Deaf culture, 160; and educating Age Discrimination in Employment Act, xvi deaf children, 30-3I; and Gallaudet uprising, I5; Agent Orange, 176, 178, 180, 182 and nonwhite deaf advocates, 30; and Title II AHRC. See Association for Help of Retarded public services, 100; and TT/TTY designations, I52 Children Americans with Disabilities Act (ADA): criticism AIDS (autoimmune deficiency syndrome), 89, 9I, of, xvii, 105-109; enactment, xvi, 26, 28-29, 89-93, 102, 125, 128, 134-135, 166-168 IIO, 127; Supreme Court decisions, 102-105; Titles AIDS Coalition To Unleash Power (Act-Up), 166, 168 I-V, 93-I02: See also affirmative action; assisted Albertsons, Inc. v. Kirkingburg, I03-I04 suicide; EEOC Enforcement Guidance; Sears Report 266 INDEX amyotrophic lateral sclerosis (ALS), 133, 147, I57, 165 Becker, Lawrence, 161 Anatomy of Prejudice, The, (Young-Bruehl), XV Beers, Clifford W., Mind That Found Itself, 118 And the Band Played On: Politics, People, and the AIDS Beezer, Robert, 134 Epidemic (Shilts), 168 n90 Bell, Alexander Graham, I5 antidepressants, I58 Bell, Christopher G., and Robert L. Burgdorf, Applied Behavioral Analysis (ABA), 192 Accommodating the Spectrum of Individual Abilities, Appointment with Dr. Death (Betzold), about Jack 46 n51 Kevorkian, 133n9, nII Bell, Grove City v., 78-79 APTA. See American Public Transit Association Bennet Contour-Plus (mammogram machine), APTA v. Lewis, 65-66, 83 n35 168 n92 ARC. See Association of Retarded Citizens Benson v. Northwest Airlines, 95 Architectural and Transportation Barriers Berger, Stephen, 59, 62 Compliance Board. See Access Board Bergstadt, Kenneth, 146 Arc, The. See Association of Retarded Citizens Berkowitz, Edward D., Disabled Policy, 34, 9I Armstrong, Wilson v., 103 n98 Bernstein, Marcia, 30-31 Arnold v. United Artists Theatre Circuit, 79, 97 Betzold, Michael, Appointment with Dr. Death, Asch, Adrienne, 145 n85, 164 133 n9, nII ASL. See American Sign Language "Beyond Affliction: The Disability History Project" assisted suicide: and AIDS activists, 134-135; and (radio program), XV n7, 9 n36, I2 n46, I3 n49, 17 n24 euthanasia, 138-141; and pain management, 135- Beyond Ramps: Disability at the End of the Social 137; severe disability vs. terminal illness, 145-148; Contract (Russell), I26 n99 and Supreme Court rulings, 133-134 Biotech Century, The: Harnessing the Gene and Remaking Association for Help of Retarded Children the World (Rifkin), 164 (AHRC), 9 Birthday Balls (March of Dimes), 7-8 Association of Children with Retarded Mental Black Deaf Advocates (BDA), 29-30 Development (ACRMD), 9 Black, Kathryn, In the Shadow of Polio, 4 Association of Retarded Citizens (ARC, The Arc), 9 Black Stork, The: Eugenics and the Death of Defective Atlantis Community, 81 Babies in American Medicine and Motion Pictures atomic testing, 179-180 (Pernick), 138 Augberger, Michael, 71, 82-85 Blanck, Peter, 108 autism, 156, 191-192 Blanck, Ronald R., 176 autoimmune deficiency syndrome. See AIDS Blank, Wade, 71, 82-83, 200 automobiles: and disabled veterans, 173-175; and blindness: compared to deafness, 14-15; and white canes, 20 mobility, 20-21. See also Braille, Louis; Magoo, Mr.; talking books Baby Jane Doe case, 161 Board of Education, Brown v., 69, I85 Bach, Philip, I6I Board of Education, Dyrcia S. v., 186 Bachman, Ronald E., II5 Board of Education, Jose P. v., 186-188 Balanced Budget Act of 1997, I28 Board of Education, United Cerebral Palsy v., 186 Barber, Rims, I85 Board of Education of the Borough of Clementon School Barbier, Charles, I8 District, Oberti v., 190 Barden-LaFollette Act of 1943, 171 Board of Education of the District of Columbia, Mills v., BART. See Bay Area Rapid Transit 184-185 Baruch, Bernard, 172 Boch, Arlie, 170 Bassoff, Sylvia Flexer, 6 Body Silent, The (Murphy), 203-204 Bay Area Rapid Transit (BART), 54, 63-64 Body's Memory, The (Stewart), 202-203 BCID. See Brooklyn Center for Independence of Boggs, Elizabeth, 89 the Disabled Boston Center for Independent Living (BCIL), 43, 47 BCIL. See Boston Center for Independent Living Boston University, Elizabeth Guckenberger v., 80, BDA. See Black Deaf Advocates 197-198 Beautiful Mind, A: A Biography of John Forbes Nash, Jr. Botts, Fred, 3-4 (Naser), II8 Bourne, Randolph, II-12 INDEX 267 Bouvia, Elizabeth, 145-146 Center for Independence of the Disabled in New Bovard, James, I06-107 York (CIDNY), 34, 39, 45, 47, I5I, 214 Bowe, Frank: on Deaf Culture, 27; on disability Center for Independent Living (Berkeley) (CIL), as civil rights movement, 213; on disability VS. 39-42, 44, 45, 54 handicapped, 147; on disability prejudice, 73; on cerebral palsy: and severe disability VS. terminal Ed Roberts, 42; on employment, по; and Section illness, 145-146; and Somoza twins, 191; and 504 demonstrations, 29, 53, 55; on universal technology, 147, 207 n34 design, 149 Chabner v. United of Omaha, 79 n28, 8I Bracco v. Lackner, 79 Chamberlin, Judi, II9-I20 Bragdon v. Abbott, IO2 Chatoff, Michael, 99 Braille, Louis, 14, 18-19 Cherry, James L., 50-51 Braille keyboard, I56 Cherry v. Mathews, 50, 51n6 Bravin v. Mount Sinai Medical Center, 151113 Child Health Insurance Program (CHIP), 126-127 Breathing Lessons (film), about Mark O'Brien, 132 Childhood and Society (Erikson), 202n8 Breggin, Peter R., Toxic Psychiatry, 158 Children's Defense Fund, 185 Brewer, Judy, 157 Childs, Theodore (Ted), 73 Bristo, Marca, 44-45, 137, 203, 212-213 CHIP. See Child Health Insurance Program Brock, Walter, If I Can't Do It (film), 206 Choate, Alexander v., 67 Brooklyn Center for Independence of the Disabled "Christina's World" (painting), I55 (BCID), 45 Christmas Carol, A (Dickens), XV. See also Tiny Tim Brown, Dale, 9I CIDNY. See Center for Independence of the Brown, Jerry, 41 Disabled in New York Brown, Steven E., 203 CIL. See Center for Independent Living (Berkeley) Brown v. Board of Education, 69, I85 Citizen Soldier, 176-177 Burgdorf, Bob, 90, 46 n51 City of New York, Rodriguez v., I03 nio6 Burger, Ric, 142 civil rights: and 1960s black movement, 21, 28, 55, Burnley, ADAPT v., 66 n60 73, 83; and disability issues as, 79-82, 89, 202. See Burt, Robert, 134 also No Pity Bush, George, xvi, 85, 92-94, 108, 161, 208, 210 Civil Rights Restoration Act of 1988, 78-79 By Trust Betrayed: Patients, Physicians, and the License civil service: and discrimination toward the blind, to Kill in the Third Reich (Gallagher), 139 n48 2I-22; and League of the Physically Handicapped Byock, Ira, I35 demonstration, 5-7 Clancy, Tom, 48 Califano, Joseph, 5I, 53, 55, 69 Classic Cases in Medical Ethics (Pence), 132 nI Campbell, Jr., Arthur, 206 Clements, William, 88 cancer: and ADA eligibility, 93; and atomic Clerc, Laurent, I6 weapons, 179-181; breast, 95, 143, 164-165, Cleveland Ballet Dancing Wheels, 207 168 n92; and insurance companies, 125; and pain Cleveland, Carolyn C., IO3 management, I36 Clinton, William (Bill) Jefferson, 96, 108, 126, 130, Cannon, Dennis, 56-57, 64, 66, 69 136, 191, 208 Cantor, Eddie, 8 Cochin, Ira, 155 Carabello, Bernard, II4 cochlear implant, 160 Carmichael, Stokely, 39 Coelho, Tony, 90, 92 Carolyn C. Cleveland, Policy Management Systems Cohen, Shirley, Targeting Autism, 192 n42 Corp., et al. v., 103 Coleman, Diane, 133, 139-144, 148 Carr, Daniel, 136 Coleman, Disabled In Action of Pennsylvania v., 56, 58 Carter, Jimmy, 5I-53, 56, 89 Colin, Ann, Willie, 194 Case About Amy, A (R. C. Smith), on the education Collins, Francis, 163 of a deaf child, XV, 189 Columbia Institution for the Deaf, Dumb, and Casellas, Gilbert F., 109, II4 Blind, 17 Cedar Rapids v. Garret F., I93 Coming Home (film), 47-48 Center, Claudia, II7 Committee of Bar Examiners of the State of California, 268 INDEX Mueller v., 80 DIA. See Disabled In Action Communications Act of 1934, 152 Diamond, Sheila, 135 Community Advocacy Press (developmental Diaz, Arnold, 59 disabilities/independent living magazine), II4 Dickens, Charles, A Christmas Carol, XV Compassion In Dying, 135, 141, 143 Dickenson, Brian, 157 computers, 155-158 Didario, Helen L. v., IOO-IOI Concepts of Independence, 35-36, 47 Disability Law Center. See New York Lawyers for Congress of Milan (of 1880), I5-17 the Public Interest conjoined twins, I60 Disability Rag (magazine), 204 Connecticut Society for Mental Hygiene, II8 Disability Rights Education and Defense Fund Conquering Schizophrenia: A Father, His Son, and a (DREDF): founding and overview of, 71, 77-79; Medical Breakthrough (Weiden), I59 and Title III public accommodation, 97 Cook, Tim, 82 Disability Watch: The Status of People with Disabilities in Corcoran, Paul, 43 the United States (Kaye), 93-94 Cranston, Alan, 66-67 Disabled American Veterans (DAV, formerly Crew, Rudolph, 193-194 DAVWW), 171, 179-182 critics, of the ADA. See Doherty, Brian; Howard, Disabled In Action (DIA): and public accessibility, Philip K.; Olson, Walter; Stossel, John 56, 62, 99, 100; and public demonstrations, 58-59, Crocker, Allen, I61 96; founding and overview of, 7I-76, 99 cross-disability advocacy, 52, 56, 105, 2IO-2II Disabled In Action v. Empire State Building, 75, 96 Crow, Jim, I61. Disabled In Action of Pennsylvania v. Coleman, 56, 58 Cullimore, Allan R., 174 Disabled in Action of Pennsylvania v. Sykes, 68 n77 Cuomo, Mario, 62 Disabled Policy: America's Programs for the Handicapped curb cuts, 26, 40, 42, 54, 98, 99, 189, 199 (Berkowitz), 34n4, 9I Disabled Students Program (DSP), 39 Dalton (private school), special education at, 193 Dix, Dorothea, I9 n38, II7 Daniel R. R. v. State Board of Education, 190 Dixon, Keith, I2I Dart, Justin: and the ADA, 88-92, 93, 106-107, 109, Doherty, Brian, 105-107, 108 208; on independent living, 47; and Justice For Dole Foundation, 77 n18 All, 71, 85-86 Dole, ADAPT et al. v., 68 Dart, Yoshiko, 85 Dole, Maine Association of Handicapped Persons v., DAV (formerly DAVWW). See Disabled American 56, 67 Veterans Domenici, Pete, II5 Davis, Frances, 57, 65-67, I05 Dooha, Susan, 213 Davis, Southeastern Community College v., 57, 8 n27, Dopico v. Goldschmidt, 58, 67, 76, 188 65-67, I05 Dow Chemical Co. et. al., Ok-Lee v., 178 n61 Days Inn of America, 97-98 Dowd, Maureen, 2 deafness, compared to blindness, 14-15 DREDF. See Disability Rights Education and Deaf in America: Voices from a Culture (Padden and Defense Fund Humphries), I6 n16, 27 Dreger, Alice D., I60 Death of Common Sense, The: How Law Is Suffocating DSP. See Disabled Students Program America (Howard), 26, 75, 105, 108, 150, 153, 196 Dusenbury, Joseph, 89 Deaf culture, 26-29, 160 Dutton, Melinda, I26 Deaver, George G., 172 duty to die, 139-140 deinstitutionalization See independent living, Dybwad, Gunnar, 9 institutionalization Dyrcia S. v. Board of Education, I86 DeJong, Gerben, 46 de l'Epée, abbé, 16-17 demonstrations. See protests Early Periodic Screening, Diagnosis and Testing Department of Transportation, Strathie v., 81n30 (EPSDT), I27 Desario v. Thomas, I26 Easter Seal. See National Easter Seal Society Developmental Disabilities and Bill of Rights Act Eastern Paralyzed Veterans Association (EPVA): of 1975, 185 and the ADA, 95, 99, 208; and affirmative action, INDEX 269 III-II2; and long-term care, 127. See also EPVA v. FDA. See Food and Drug Administration MTA; ADAPT et al. v. Dole FDR Memorial, xvi Eddington, Pat, I82 FDR's Splendid Deception: The Moving of Roosevelt's Edelman, Marion Wright, 185 Massive Disability and the Intense Efforts to Conceal It education: and the IDEA, 185, 189-193; least from the Public (Gallagher), In2-3, 3 restrictive environment, 187-188; individualized Federal Aid Highway Act of 1973, n20 education plan, 78, 194. See also reasonable Feldblum, Chai, 104 accommodation; special education Feres, U.S. v., 182 EEOC. See Equal Employment Opportunity Fernald State School for People with Mental Commission Retardation, I9 n38 EEOC Enforcement Guidance: The Americans with Fieger, Geoffrey, 133 Disabilities Act and Psychiatric Disabilities, II4-II6 Figueroa, Patricio, 47 Eisenberg, Leon, I58 Final Exit: The Practicalities of Self-Deliverance and Eist, Harold, 121, 163 Assisted Suicide for the Dying (Humphry), 148n98 Elizabeth Guckenberger, Boston University v., 80, Finley, Jonathan, I25 197-198 Fiorito, Eunice, 52-53, 208, 2II-212 Elswit, Larry, 197, 198 fireboxes, 100 Emanuel, Ezekiel, 140, 143, 144 First Lady of the Lighthouse: A Biography of Winifred Emanuel, Linda, 140 Holt Mather (Mather et al.), n39 Emergency Relief Bureau (ERB), 5-7 Fisher, Barbara, I96 Emerman, Anne, and accessible public transit, 59- Fleischman, Alan, I60 61; on assessing the disability rights movement, Florida Board of Regents, Kimel v., xvi 211, 214; on assisted suicide, 140; and college Flying Solo: Re-imagining Manhood, Courage and Loss experiences, 33; on employment, II2 (Kriegel), 202n9 Empire State Building, Disabled In Action v., 75, 96 Flynn, Laurie M., II7 Encyclopedia of Disability and Rehabilitation, 46 n47 Foley, Kathleen, 136, 142 Enders, John, 167 Food and Drug Administration (FDA), 158, 166, 167 Ensign, Tod, 176-179, 182; GI Guinea Pigs, 176 n47 Ford, Gerald, 56, 9I EPSDT. See Early Periodic Screening, Diagnosis Frank, Morris, 20 and Testing Free Speech Movement, 38 Epstein, Steven, Impure Science, 166 Freedom To Die: People, Politics, and the Right-to-Die EPVA. See Eastern Paralyzed Veterans Association Movement (Humphry and Clement), 139 n50 EPVA v. MTA: 1979 case, 57-58; 1982 case, 58-6In4I Frieden, Lex: and the ADA, 88-90, 200; and Equal Employment Opportunity Commission college discrimination/inaccesibility, 43-44; (EEOC), 94, 108-109, IIIn7, п4-п16, 130, 164 on the disability rights movement, 208, 210; on ERB. See Emergency Relief Bureau independent living, 213 Erikson, Erik H., Childhood and Society, 202 Friendly Ice Cream Corporation settlement, 98 Essex, Max, I67 Fries, Kenny (ed.), Staring Back, 205 n25 eugenics, 12, 17, 138-140, I60 From Goodwill to Civil Rights: Transforming Federal Eustis, Dorothy Harrison, 20 Disability Policy (Scotch), n56, 50, 62, 90 euthanasia, 133-134, 138-143, 20I Everyone Here Spoke Sign Language: Hereditary Gage, Nathanael, 64 Deafness on Martha's Vineyard (Groce), I6-18 Gallagher, Hugh Gregory, By Trust Betrayed, 139 n48; Excuse Factory, The: How Employment Law Is Paralyzing FDR's Splendid Deception, In2-3, 3 the American Workplace (Olson), 108 Gallaudet, Edward M., 17 Eyegaze system, I57 Gallaudet, Thomas H., 16-17 Gallaudet University, 1988 uprising, I5, 28-29 Fair Housing Amendments Act of 1988, 45, 78, I20 Garrett v. University of Alabama, xvi Family Voices, I26 nioo Garret F., Cedar Rapids v., 193 Fasano, Robert, 125 Gay Men's Health Crisis (GMHC), 102, 166, 213 Fay, Fred: and the ACCD, 52; on AIDS, 9I; and Gelman, Robert, I63 independent living, 43, 47; and Justice For All, Gensler, Martin, 180 85-86 Gerry, Martin, 50n5 270 INDEX GI Guinea Pigs: How the Pentagon Exposed Our Troops Haughton, Claiborne (Clay), 109, 131 to Dangers More Deadly Than War (Ensign and Hawking, Stephen, 147-148 Uhl), 176 n47 HCFA. See Health Care Financing Administration Gill, Carol, 139-141, 204-205 Health Care Financing Administration (HCFA), I26 Gilliam, Judy, 131 Health, Education, and Welfare, U.S. Department Gliedman, John, and William Roth, The Unexpected of (HEW), 504, 29, 50-55, 65, 69 Minority, 3, II, 43 health maintenance organization (HMO), 84, Glucksberg, Washington v., 133-134 I2I-125, 163-164, 167 GMHC. See Gay Men's Health Crisis Hearne, Paul, 77, 89, 90, 92, 212 Godfrey, Wayne, 178 Helen L. v. Didario, IOO-IOI Goffman, Erving, Stigma, 29 Hemlock Society, 141 Gold, Stephen, 71, 8I-82, 85, 103, 133 Hendin, Herbert, 141, 144 Goldschmidt, Dopico v., 58, 67, 76, 188 Hendler, Nelson, I36 Goldstein, Andrew, II8 Hendrick Hudson Central School District v. Rowley, 189 Goldwater Memorial Hospital, 33-34, 48 Henry v. Squaw Valley Ski Resort, 79 Golfus, Billy, When Billy Broke His Head (film), 206 Hentoff, Nat, 133 Goodwin, Doris Kearns, No Ordinary Time, I, Herdrich, Pegram v., 125 n85 3 nII, n13, 4, 8n28 Heumann, Judith E.: and assessment of movement, Gorman, David W., 179, 181-182 214; college discrimination/inaccessibility 7I-76; Gostin, Larry, 163 on the IDEA, 189; on "normality," I; and Section Gourgey, Karen Luxton, 25 504 demonstrations, 49, 54; on special education, Grandin, Temple, Thinking in Pictures, 156 196-197, 199. See also American Coalition of Gray, John C., 186-187 Citizens with Disabilities; Disabled In Action; Greenberg, Ann, 9 National Council on Disability; World Institute Greenberg, Sheldon, II7 on Disability Greer, Richard, II9-120 Hevesi, Alan, I28 Greer v. Rome City School District, 190 HEW. See Health, Education, and Welfare, U.S. Greitenstein, A. G., I63 Department of Gresham, John, xvii nio HILC. See Harlem Independent Living Center Greyhound Bus Company, 74, 84-85, 88, 98 n61 Hill v. New York City Board of Elections, 75-76, 77 nii Groce, Nora, Everyone Here Spoke Sign Language, HIV. See AIDS 16-18; U.S. Role in International Disability Activities, HMO. See health maintenance organization 9n37 Hockenberry, John, 205, 210; Moving Violations, Groopman, Jerome, I67 IIn42, 137, IS5 Grove City v. Bell, 78-79 Holland, Rachel, Sacramento City Unified School District Guarisco, Anthony, 179 v., 190-191 Guckenberger, Elizabeth, 80, 197-198 Home From the War: Learning from Vietnam Veterans Guida, Jr., Alphonso V., II5 (Lifton), 178 n59 Guide Dog Users, Inc., 25-26 Hopkins, Harry, 6-7 Gulf War syndrome, 176-178, 181-183 Hotchkiss, Ralf D., 52, 149, 154-155, 215 Gwin, Lucy, 42, 210 n55 Housing and Urban Development, U.S. Department of (HUD), 44 Hacker, Andrew, Two Nations, xvn5, 77n5 Howard, Philip K., Death of Common Sense: and the Haiselden, Harry, 138 disabled lobby, I05, 108, 196; and disability issues Handicapped Children's Protection Act of 1986, 78 as a right, 26; and frivolous lawsuits, 75; and Handicapped Persons Legal Support Unit technology, 150, 153 (HPLSU), 77 Howe, Samuel Gridley, IS, I9-20 Harkin, Tom, 92 Hoyer Kartop-Lift, 175 Harlem Independent Living Center (HILC), 45 Hoyer, Steny H., 92 Hartman v. Loudoun County Board of Education, Ho, David, 166-167 192n43 HPLSU. See Handicapped Persons Legal Support Haskell, Florence, 5-7 Unit INDEX 271 Hsiao, John K., 159 Johnson, Mary, 146, 206, 210 n55 HUD. See Housing and Urban Development, U.S. Johnson, Mordecai, 3 Department of Jordan, I. King, 28 Human Genome Project, 163-165 Jose P. v. Board of Education, 186-188 Humphrey, Hubert, 50 Just One Break (JOB), 175 Humphry, Derek: Final Exit, 148n98; and Mary Justice For All (JFA), 71, 85-87, 109, III, 126, 130, 200 Clement, Freedom to Die, 139 n50 Hutchinson, Tim, 180 Kahler, Richard, I09 Hyman, Lester, 2 Kahn, Mary Jo Ellis, I64 Kallianes, Virginia, 138 ICD. See Institute for the Crippled and Disabled. Kamisar, Yale, 134, 140 See also International Center for the Disabled Kamisiyah ammunition depot, 181 IDEA. See Individuals with Disabilities Kanapell, Barbara, 27 Education Act Katie Beckett program, I26 nioo IEP. See individualized educational plan Kaye, H. Stephen, Disability Watch, 93-94 If I Can't Do It (film) (Brock), 206 Keller, Helen, 19, 3I-32 Igasaki, Paul K., 130 Kelley, Simi (later Simi Linton), 40 Illinois Regional Transportation Authority, Lloyd v., 65 Kemp, Evan, 208 ILRU. See Independent Living Research Utilization Kendra's Law, 118 Imperiale, Michael, 60-6I Kennedy-Baring Bill of 1957, 22 Impure Science: AIDS, Activism, and the Politics of Kennedy, Edward M., xvii Knowledge (Epstein), 166 Keplinger, Daniel, King Gimp (documentary), In the Shadow of Polio: A Personal and Social History 207n34 (Black), 4 Kessler, Henry, 172 Independent Contractor Home Care System, 35 Kevorkian, Jack, 132-133, 135, 138, 139 independent living: and college accessibility, Kiley, Robert, 62 36-37; and deinstitutionalization, 33-36; and Kimel v. Florida Board of Regents, xvi rehabilitation, 46-47; and services of, 45-46. See King Gimp (documentary), by and about Daniel also individual center names Keplinger, 207 n34 Independent Living Research Utilization (ILRU), 44 King, John E., 36 individualized educational plan (IEP), 78, 185- King, Patricia, 164 189, 194 Kinney v. Yerusalim, 99 n76 Individuals with Disabilities Education Act (IDEA), Kirkingburg, Albertsons, Inc. v., 103-104 27, 55, 78-79, 86, 92, 184-197, 2II-212 Kisor, Henry, What's That Pig Outdoors, 3I Institute for the Crippled and Disabled (ICD), 172. Klinefeld, Herb, 170 See also International Center for the Disabled Knauth, Oswald W., 5 Institute on Disability Culture, 203 Koch, Edward, 62, 75-76 institutionalization, II, 118, 119, 127, 210 Koestler, Frances A., An Unseen Minority, I5 n6, n7, Inter-Continental Hotel case, 96 I8 n29, I9 n32, n36, n37, 20 n43 International Center for the Disabled, 172 n18 Kramer, Herbert, 76 internet, 86, 148, 156-158, 162-163, 2II Kramer, Larry, I35, I68 "invisible disabilities," xvi Kramer, Peter, Listening to Prozac, 158; Should You Irvin, Cass, 204 Leave?, 158 n38 Irwin, Robert Benjamin, I5 Kramer, Victor, 50 Kriegel, Leonard, Flying Solo, 202n9 Janofsky, Julie, 107 Kurzweil reader, по, I56 Javits, Jacob, 34, 77 Kuusisto, Stephen, Planet of the Blind, 20 n42 JCDecaux, 150-I5I Kushner, Tony, I68 Jensen, Sandra, 162-163 Kyl Amendment, I22 Jernigan, Kenneth, 22, 24, 25 JFA. See Justice For All L.C. and E.W., Olmstead V., 103-105 JOB. See Just One Break LaCheen, Cary, IOO 272 INDEX Lackner, Bracco v., 79 by People with Developmental Disabilities, II3 n18 LaGuardia, Fiorello, 6 Longmore, Paul, xvn6, 4, II, 130, 206 Lait, Jack, 138 Loudoun County Board of Education, Hartman v., Landman, J. P., 139 192n43 Lane, Harlan, When The Mind Hears, 14n2, I6 n17, Love, Susan, 165-166 n22, n25, n26 Lowell, Amy, II language: and deafness VS. blindness, 14; and LRE. See least restrictive environment Sign VS. oralism, I6-18. See also American Sign Luciano, Felipe, 55 Language; phonics; Sign (language) Lunn, Kitty, 207 Language Instinct, The: How the Mind Creates Language Lynn, Joann, 215 (Pinker), IS nio, I6 n13 LaPore, National Federation of the Blind v., 81n30 M., Nicholas, and M. M. (autism), 191-192 LaSpina, Nadina, 27, 104, 20I-202, 205-206 Mace, Ronald L., 149 Latimer, Henry, I5 Macrolab, 155-156 Latimer, Robert and Tracy, 145 "Magic Wand, The" (poem) (Manning), 206-207 Lauder, Michael, II8 Magoo, Mr., 209 Lawrence, Dixie, I61 Maine Association of Handicapped Persons v. Dole, LDs. See learning disabilities 56, 67 League of the Physically Handicapped, 5-7, 21, Mallory, Randolph, I60 55, 171 manic depression, II5, II7, I59 learning disabilities (LDs), 80, 9I, 156, 185, 187, Mann, Horace, I5 193-199 Manning, Lynn, "The Magic Wand", 206-207 least restrictive environment (LRE), 100, 184, March of Dimes, 7-8, IO, I67 187-191. See also Individuals with Disabilities Marlow, Sandra, 179 Education Act Marshall Coleman et al. v. ABB Lumus Crest et al., 182 Leichman, Lawrence, I6I Marshall, Thurgood, 67 Lenz, Fritz, 138-139 Martin v. PGA, 205 n23 Lessenberry, Jack, 133 Matano, Dorothy, 23 Let Me Hear Your Voice: A Family's Triumph over Marx, Robert, 171 Autism (Maurice), 191n41 Massi, Carr, 39 Levine, Robert, 41 Mastroianni, Peggy, 164 Levy, Chava Willig, A People's History of the Mather, Winifred Holt, 20 Independent Living Movement, 49 n2 Mathews, Cherry v., 50, 5In6 Lewis, APTA v., 65-66, 83n35 Mathews, David, 5I Lewis, Jerry (Muscular Dystrophy Telethon), IO-II, Matson, Floyd, Walking Alone and Marching Together, 74, 137 21n46 Libassi, Peter, 52 Maurice, Catherine, Let Me Hear Your Voice, 191n41 Lifton, Robert J., Home from the War, 178 n59; The McAfee, Larry, 146-147 Nazi Doctors, 138 McCaffrey, Rosemarie, 25 Lighthouse movement, 20 McGregor, Robert P., 17 Lincoln, Abraham, 17, II6 McHugh, Robert, 43 Lindsay, John, 52 McManus, Peggy, I26 Linton, Simi (formerly Simi Kelley), 206 McQuade, Denise, 59 Lions Club, 20-21 MDA. See Muscular Dystrophy Association Lipton, Diane, 190-191 Mead, Margaret, 132 Listening to Prozac (Kramer), 158 Medicaid, 34, 44, II2, 122, I25-I30, 142. See also Living Downstream: A Scientist's Personal Investigation Medicaid Community Attendant Services Act of Cancer and the Environment (Steingraber), Medicaid Community Attendant Services Act 165n66 (MiCasa), 84. See also Medicaid Community Lloyd v. Illinois Regional Transportation Authority, 65 Attendant Services and Support Act Long Island University, 73-74 Medicaid Community Attendant Services and Longhurst, Nancy Anne, The Self-Advocacy Movement Support Act (MiCassa), 84n39 INDEX 273 Medical Savings Account (MSA), I2I-122 National Mental Health Association Medicare, II2, I2I-125, 128-130, 144 National Committee for Mental Hygiene, 118 Medicare Plus Choice, I22 National Council on Disability (NCD), 88, 89-90, Melledy, Angela, 210 n55 127-129, 200, 203, 212 Men, The (film), 47-48 National Deaf-Mute College, 17. See also Gallaudet Mental Health Parity Act of 1996, II9 University Mental Health Systems Act of 1980, II9 National Easter Seal Society, 9-IO, 36, 54, 63-64 Mental Patients Liberation Project, 199 National Federation of the Blind (NFB): contrasted Meredith, James, 38 to ACB, 25-26; and the ADA, 93; and founding of, Metropolitan Transportation Authority (of New 21; and New York City subway gates, 22-23; and York City) (MTA), 22-23, 57-62, 75 Rehabilitation Act of 1973, 24-25 Meyer, Karl E., 2 National Federation of the Blind v. LaPore, 81n30 MiCasa. See Medicaid Community Attendant National Foundation for Infantile Paralysis, 8. See Services Act also March of Dimes MiCassa. See Medicaid Community Attendant National Gulf War Resource Center, 177, 183 Services and Support Act National Institutes of Health (NIH), 166, I67 Miller, Paul S., III National Mental Health Association (NMHA), Mills v. Board of Education of the District of Columbia, 118-121 184-185 National Mental Health Foundation, 118 Mind That Found Itself: An Autobiography (Beers), II8 National Network of Learning Disabled Adults, 9I Mistler, Sharon, 52 National Organization on Disability (NOD), по, Moakley, Terence, II2 I29 Mobility Through Access, 58 National Society for Crippled Children. See Mosley, Donald, I46 National Easter Seal Society Mother Teresa, I53 National Telability Media Center, 2II Mount Sinai Medical Center, Bravin v., 151 n13 Nazi Doctors, The: Medical Killing and the Psychology of Mouth (magazine), 210 Genocide (Lifton), 138n42 Moving Violations: War Zones, Wheelchairs, and NCD. See National Council on Disability Declarations of Independence, 137, 155 Netherlands, policy on assisted suicide, I4I-142, 144 MSA. See Medical Savings Account Neugeboren, Jay, Transforming Madness, 119 n59 MTA. See Metropolitan Transportation Authority New York Able (newspaper), 210 (of New York City) New York City Board of Elections, Hill v., 75-76, 77 nu MTA, EPVA v.: 1979 case, 57-58; 1982 case, 58-61n41 New York City 504 Democratic Club, 214 n70 Mueller v. Committee of Bar Examiners of the State of New York Lawyers for the Public Interest (NYLPI), California, 80 76-77, 100, 191-192 Muller, Keith, 3I New York Times, editorial policy on disability, multiple chemical sensitivity, 156 208-210 Murphy, Robert F., The Body Silent, 203-204 New York Yankees, Pascuiti v., 96 n61 Murphy v. United Parcel Service, Inc., 103-104 NFB. See National Federation of the Blind Muscular Dystrophy Association (MDA), IO-II, 74 Nickerson, Eugene H., I86 NIH. See National Institutes of Health NAAV. See National Association of Atomic Veterans 9 Highland Road (Winerip), 118n46 NAD. See National Association of the Deaf Nisan, Raphael, III Nagle, John, 24 Nixon, Richard, 49 NAMI. See National Alliance for the Mentally Ill NMHA. See National Mental Health Association Naser, Sylvia, A Beautiful Mind, II8 No Ordinary Time: Franklin and Eleanor: The Home National Alliance for the Mentally Ill (NAMI), II7, Front in World War II (Goodwin), I, 4 I20-I2I No Pity: People with Disabilities Forging a New Civil National Association of Atomic Veterans Rights Movement (Shapiro), 28 n77, 29, 53, 88 (NAAV), 179 NOD. See National Organization on Disability National Association of the Deaf (NAD), 17, 28, 29 Northrup, Christiane, 166 National Association of Mental Health. See Northwest Airlines, Benson V., 95 274 INDEX Not Dead Yet, 47, 132-148 Pennsylvania Department of Corrections v. Yeskey, Nugent, Tim, 36 102-103 Nurse's Health Study, I66 n72 People First, II3 NYLPI. See New York Lawyers for the Public Interest People's History of the Independent Living Movement, A (Levy), 49 n2 Percy, Charles, 50 O'Berry, Russell, 181 Perkins, Edward, 24 Oberti v. Board of Education of the Borough of Clementon Pernick, Martin S., The Black Stork, 138 School District, I90 Peterson, Roger, 52 O'Brien, Mark, 132 Pfeiffer, David, 206 O'Connor, Basil, 8 PGA, Martin v., 205 n23 O'Connor, Sandra Day, 104 phonics, VS. whole-language method, I95 Ogle, Rebecca (Becky), 85-86, 109, III, 130 Pimentel, Al, 52 Ok-Lee v. Dow Chemical Co. et. al., 178 n61 Pinker, Steven, The Language Instinct, I5 nio, I6 n13 Olinger v. U.S. Golf Association, 205 n23 Pitts, Gary, 182-183 Olmstead v. L.C. and E.W., 103-105 Planet of the Blind: A Memoir (Kuusisto), 20 n42 Olson, Walter, Excuse Factory, I08 Plutonium Files, The: America's Secret Medical One-step campaign, 153 Experiments in the Cold War (Welsome), 179 n66 Operation Castle, 179 Policy Management Systems Corp., et al., Carolyn C. oralism, I5-17, 19, 29-31 Cleveland v., 103 Oregon, law on physician-assisted suicide, 140-143 poliomyelitis, Sabin and Salk vaccines, 8-10, 167. See OVR. See Vocational Rehabilitation, Office of also March of Dimes; Roosevelt, Franklin Delano Owen, Mary Jane, 146, 20I Politics of Readjustment, The: Vietnam Veterans Since the Owens, Celeste, 30 War (Scott), 176 n42 Owens, Major, 9I polling sites, 75-76, III Oxford HMO, 123-124 Ponce de Leon, Pedro, I5 post-traumatic stress disorder, 176 Potoker, Caren, III Pacht, Harvey, 114 Pacific Gas and Electric, Putnam v., 80 poverty: and benefits to children, 126; and the deaf, Padden, Carol, and Tom Humphries, Deaf in 32; and disability, 214; and language skills, I5, America, I6 n16, 27 186-187; legal services programs, 76 pain management, 135-137 Practical Ethics (Singer), xiii-xiv, 132 nI Presidential Conference on Race, xvi Paralyzed Veterans of America (PVA), 56, 173-174 Paraplegia News (monthly newspaper), 173-175 President's Committee on Employment of People PARC. See Pennsylvania Association for Retarded with Disabilities, 49, 63, I57 Children privacy, of medical records, 163-164 parents, initiation of childhood disability protests: and ADAPT, 83-84, 96; and the DIA, 58-59, 74; and Gallaudet University, 15, 28-29; organizations, 8-IO Parks, Rosa, 84 and Gray Panthers, 122; and Handicapped Adults Association, 209-210; and League of the Parrino, Sandra, 89-90, 92 Pascuiti v. New York Yankees, 96 n61 Physically Handicapped, 5-6; and Section 504 demonstrations, 49, 53-56 Pataki, George, 195 pay toilets, 150-151 psychiatric disabilities, 93, II4-121, 158, I63 Psychiatric Foundation, II8 Pechura, Constance, 180 Pegram v. Herdrich, 125 n85 "psychiatric survivors," II9-121 Public Transit Authority, Rhode Island, Rhode Island Pelletier, Leonard, 38 Pence, Gregory E., Classic Cases in Medical Ethics, Handicapped Action Committee v., 56, 58, 67 Puglisi, Matt, I82 132 nI Pennsylvania Association for Retarded Children Putnam v. Pacific Gas and Electric, 80 PVA. See Paralysed Veterans of America (PARC), I84 Pennsylvania Association for Retarded Children v. Pennsylvania, 184 n2 QILC. See Queens Independent Living Center INDEX 275 Queens Independent Living Center (QILC), 45-46 Rosen, Roslyn, 28 Quill, Vacco v., 132-135 Rosenman, Sam, 3 Ross McCaughey, Betsy, I25 Rabby, Rami, 22-24 Rotello, Gabriel, Sexual Ecology, 198 Ragged Edge (magazine), 210 Rowley, Amy, XV, 189 Ragged Edge, The (book), (Shaw, ed.), 20In3, n4; Rowley, Hendrick Hudson Central School District v., 189 204 n20, n22; 205 n26; 2I2 n61 Rubenfeld, Phyllis, 138-139, 206 Raggio, James, 57, 81, 108 Ruff, Charles, I Ramsey, Joyce, I24 Rusk, Howard, 52, 170, 172-173 Ranch Hand operation, 178 Russell, Marta, Beyond Ramps, I26 n99 Rappaport, Ida, 9 Ravitch, Richard, 59 SABE. See Self Advocates Becoming Empowered Reagan, Ronald, 23, 66, 78, 89-90, 208 Sabin, Albert, 8-10, 167 reasonable accommodation: and accessible public Sacks, Oliver, Seeing Voices, 14, 27-29 transit, 58, 67; and ADA backlash, 106, 108; and Sacramento City Unified School District v. Holland, computers, 157; and education, 156, 197-198; and Rachel, 190-191 employment, 9I, 94-95, II4, 116-117; and public Salk, Jonas, 8-10, 167 services, 100; and the Supreme Court, 103 Sandel, Michael J., 144 Reeve, Christopher, xvi, 137-138, I57 Sanjek, Lani, I22 Rehabilitation Act of 1973, 24, 29, 34, 46, 49-55, III Satel, Sally L., II6 Reich, Alan, IIO Saviola, Marilyn, 33-34, 214 Rehnquist, William B., 134 Schall, Thomas D., 2I Reinhardt, Stephen, 133, 134 Schary, Dore, Sunrise at Campobello (play and film), 4 Reno, Janet, 108, 140-141 Scheer, Susan, 123, 162-163, 208-209, 213 Rhode Island Handicapped Action Committee v. Rhode Schnair, David, 123 Island Public Transit Authority, 56, 58, 67 Schneider, Anne, 198 Rich, Frank, II8 Schnur, Sandra, 35-36, 47 Ride the Bus Days, 60-6I Schrader, Paul, I57 Riegle, Donald, 67 Scotch, Richard K., From Goodwill to Civil Rights, Rifkin, Jeremy, Biotech Century, 164 24n56, 50, 62, 90 right to die, 139, 141, 143, 144, 148n98 Scott, Wilbur J., The Politics of Readjustment, 176 n42 Riley, Richard S., 196 Sears Report (ADA compliance), 108, II2-II3 Riley v. Weyerhaeuser Paper Company, 95 Seeing Voices: A Journey into the World of the Deaf Ritalin, 158 n40 (Sacks), 14, 27-29 Rivera, Geraldo, II4 self-advocacy, II3-II4, 170-171 Robert, Daniel, 137, 202 Self-Advocacy Association of New York State, II4 Roberts, Edward: and career achievement, 208; Self-Advocacy Movement by People with Developmental the Independent Living Movement, 37-43, Disabilities, The: A Demographic Study and Directory 47; and personal assistant services, 200; and of Self-Advocacy Groups in the United States physician-assisted suicide, 146; and Section (Longhurst), II3 n18 504 demonstrations, 54. See also Center for Self Advocates Becoming Empowered (SABE), II3 Independent Living (Berkeley) Sexual Ecology: AIDS and the Destiny of Gay Men, Robertson, Steve, 176 (Rotello), 168 Rodriguez v. City of New York, 103 n106 Shabazz, Betty (Mrs. Malcolm X), 215 Rogers, Joseph, I20 Shamoo, Adil, 159 Rolling Quads (Berkeley), 39 Shapiro, Joseph P., 142; No Pity, 28 n77, 29, 53, 88 rolling-tip cane, 21 Shavelson, Lonnie, 135 Rolnick, Nancy, 144-145 Shaw, Barrett (ed), Ragged Edge, The (book), 20In3, Rome City School District, Greer v., I90 n4; 204 n20, n22; 205 n26; 212 n61 Roncker v. Walters, I90 Shaw, George, I66 Roosevelt, Eleanor, I, 1n19 sheltered workshops, I9-22, 25, II4 Roosevelt, Franklin Delano, xvi, I-8, 130 Shilts, Randy, And the Band Played On, I68 n90 276 INDEX Should You Leave? A Psychiatrist Explores Intimacy Stewart, Jean, The Body's Memory, 202-203 and Autonomy-and the Nature of Advice (Kramer), Stigma: Notes on the Management of Spoiled Identity 158 n38 (Goffman), 29 Sick Kids Need Involved People (SKIP), 35 Stokoe, William, 27 Sign (language), I4-I5. See also American Sign Stossel, John, 107-108 Language Stothers, William, 103 SILC. See Statewide Independent Living Council Strathie v. Department of Transportation, 81n30 Singer, Peter, Practical Ethics, xiii-xiv, 132 nI Stussman, Barak, 199 sit-ins. See protests suicide. See assisted suicide Skawinski, William, I56 Sullivan, Paul, 177-178, 183 Skinner, ADAPT v., 68, 82. See also ADAPT v. Burnley Sullivan v. Zebley, I26 n99 SKIP. See Sick Kids Need Involved People Sunrise at Campobello (play and film) (Schary), 4 Slekis v. Thomas, I26 Supplemental Security Income (SSI), I26 n98, 130 Smedes, Lewis, 144 Surface Transportation Assistance Act of 1982, 67 Smith-Fess Vocational Rehabilitation Act of Sutton et al. v. United Air Lines, Inc., 103-104 1920, 171 Switzer, Mary, 89 Smith-Hughes Vocational Education Act of 1917, 171 Sykes, Disabled in Action of Pennsylvania v., 68 n77 Smith, John L., 5I Smith, Mark, 85 TAB. See temporarily able bodied Smith, R. C., A Case About Amy, XV, 189 talking books, 18-19 Smith-Sears Veterans Rehabilitation Act of 1918, 171 Tansman, Melvin R., I27 Social Security Act of 1935, 5, IO, 12, 21, 103, 129 Targeting Autism: What We Know, Don't Know, and Can Social Security Disability Insurance (SSDI), 103, Do to Help Young Children with Autism and Related по, 130 Disorders (Cohen), 192 n42 Society for Disability Studies, 206 taxis, accessible, 152 Somnolent Samantha, 197-199 TDD. See telecommunication device for the deaf Somoza, Mary, 188-191 telecommunication device for the deaf (TDD), Southeastern Community College v. Davis, 57, 8n27, 152-153 65-67, I05 telethons, and exploitation for fund-raising, IO-II. Spagnoletti, Frank, I82 See also Lewis, Jerry; Reeve, Christopher special education, 77-82, II4, 185-197 teletypewriter (TTY), 99-I00, IOI, IIO, 152-153, I56 Specialty, Weissman v., 79 temporarily able bodied (TAB), 40, I09 Spiegel, Richard, 196, 199 tenBroek, Jacobus, 2I-22, 63. See also National Spieler, Marvin, I59 Federation of the Blind spina bifida, 9, 138, 143, 161, 162, 207, 212 n61 text telephone (TT), 152. See also telecommunication Squaw Valley Ski Resort, Henry v., 79 device for the deaf; teletypewriter SSDI. See Social Security Disability Insurance Thinking in Pictures: And Other Reports from My Life SSI. See Supplemental Security Income with Autism (Grandin), I56 Stabiner, Karen, To Dance with the Devil, I65 Thomas, Desario v., I26 Stahl, Leslie, I95 Thomas, Slekis v., I26 Staples, Brent, I95 Thompson, Lyn, 34-35 Staring Back: The Disability Experience from the Inside Thompson, Peter, IO5 Out (Fries, ed.), n25 Thornburgh, Dick, 108 State Board of Education, Daniel R. R. v., 190 Tiny Tim, XV, 3 Statewide Independent Living Council (SILC), 46 To Dance with the Devil: The New War on Breast Cancer Steele, Ken, I20 (Stabiner), 165 Steingraber, Sandra, Living Downstream, 165 n66 toilets, pay, 150-151 Stellman, Jeanne, 178 n62 Toward Independence: An Assessment of Federal Laws Stellman, Steven, 178 and Programs Affecting Persons with Disabilities-With sterilization, forced, 12, 138-139 Legislative Recommendations, 90 Stevens, Jane Greengold, 76 Toxic Psychiatry: Why Therapy, Empathy, and Love Stevens, John Paul, 104-105 Must Replace the Drugs, Electroshock, and Biochemical INDEX 277 Theories of the New Psychiatry (Breggin), I58 Van Wagner, Ben, I55-156 Tozer, Dana, 207 Vanik, Charles, 50 Transbus, 56-57 Verdi-Fletcher, Mary, 207 Transcending Compliance: 1996 Follow-up Report on VESID. See Vocational and Educational Services for Sears, Roebuck and Company, 108, II2-II3 Individuals with Disabilities. See also Vocational Transforming Madness: New Lives for People Living with Rehabilitation, Office of Mental Illness (Neugeboren), 119 n59 Vest, George, 24 Transportation, U.S. Department of (USDOT), 56, Veterans Administration (VA), 173, 177-181. See also 59, 65-68, 83, 98, 104 Veterans Bureau Treanor, Richard B., We Overcame, 49 n3 Veterans Affairs, Department of, 177-179. See also Tribe, Laurence, 134 Veterans Administration; Veterans Bureau Truman, Harry S., 173 Veterans Bureau, 171. See also Veterans Administra- TT. See text telephone tion; Veterans Affairs, Department of TTY. See teletypewriter veterans, disabled: and film portrayals of, 47-48; vs. Two Nations: Black and White, Separate, Hostile, disabled citizens, 7; and legislation/self-advocacy Unequal (Hacker), xvn5, 77n5 170-171; and rehabilitation, 172. See also Agent Tucker, Joyce E., III Orange; Gulf War syndrome; Paralyzed Veterans Tuite, James J., 181 of America; Veterans Administration Veterans Health Care Eligibility Reform Act of UCP. See United Cerebral Palsy (local organizations) 1996, 180 UCPA. See United Cerebral Palsy Association Viscardi, Henry, 175 (national organization) Visco, Fran, I66 Unexpected Minority, The: Handicapped Children in Vocational and Educational Services for Individuals America (Gliedman and Roth), 3, II, 43 with Disabilities (VESID), 26, 34. See also United Air Lines, Inc., Sutton et al. v., 103-104 Vocational Rehabilitation, Office of United Artists Theatre Circuit, Arnold v., 79, 97 Vocational Rehabilitation, Office of (OVR), 35-36 United Cerebral Palsy (local organizations) (UCP), 9 voice-activated computers, 156 United Cerebral Palsy Association (national voice synthesizer, I56 organization) (UCPA), 9, IO, 54, 74. See also United Cerebral Palsy v. Board of Education Wade, Cheryl Marie, 201, 32n93, 38 n17 United Cerebral Palsy v. Board of Education, 186 Waldrep, Jr., Alvis Kent, 90 United of Omaha, Chabner v., 79 n28, 8I Walking Alone and Marching Together (Matson), In46 United Parcel Service, Inc., Murphy v., 103-104 Wallstein, Peter, 161 universal design, 40, 149-152, 158, I68 Walters, Roncker v., I90 Universal Grammar, I6 War Risk Insurance Act, 171 University of Alabama, Garrett v., xvi Warm Springs (Georgia), 3-4, 8, IO, 43, 52 Unseen Minority, The: A Social History of Blindness in Washington v. Glucksberg, 133-134 America (Koestler), IS n6, n7, I8 n29, I9 n32, nn36-37, We (magazine), 2IO-2II 20 n41, n43 We Overcame: The Story of Civil Rights for Disabled Uranium 238, 177 n52 People (Treanor), 49n3 Urban Mass Transportation Assistance Act of 1970, Webdale, Kendra, 118 56 n20 Weicker, Lowell, 89-90, 92 U.S. Golf Association, Olinger v., 205 n23 Weiden, Peter, Conquering Schizophrenia, 159 U.S. Role in International Disability Activities, The: A Weisman, James, 57, 6I-62, 79, 95, 107, III, II2, History and Look Toward the Future (Groce), n37 208-209 U.S. v. Feres, 182 Weissman v. Specialty, 79 USDOT. See Transportation, U.S. Department of Wellstone, Paul, II5, 180 Welsome, Eileen, The Plutonium Files, 179 n66 VA. See Veterans Administration Wenniger, Bruce G., I67 vaccines: AIDS, 167-168; anthrax, 183 n86; Gulf War, Westling, Jon, 197-198 182; polio, 8 Weston, Jr., Russell, II8 Vacco v. Quill, 132-135 Weyerhaeuser Paper Company, Riley v., 95 278 INDEX What's That Pig Outdoors? A Memoir of Deafness Wolinsky, Sidney, 71, 79-81 (Kisor), 31n89 Women's Movement, 38, 74, 213 wheelchair: accessibility, 13, 37-44, 62-66, 74-77, Wood, Alexander, 124 79-86, 96-97, I5I-152, 209; design, 154-155. See also Works Progress Administration (WPA), 6-7, I9 Greyhound Bus Company; Transbus Work Incentives Improvement Act (WIIA), 130 Wheelchair Independence Now (WIN). See Win Independence Now Workers' Compensation, IIO, 130 When Billy Broke His Head (film) (Golfus), 206 World AIDS Conferences (Eleventh, Twelfth, and When the Mind Hears: A History of the Deaf (Lane), Thirteenth), 167-168 14 n2, I6 n17, 17 n22, n25, n26 World Institute on Disability (WID), 4I-42, 44, White, Bernice, 34 47, I54 White Cane Law, 2I-22 world wide web. See internet White, Edmund, 168 WPA. See Works Progress Administration WID. See World Institute on Disability Wrich, James, I2I Wieder, Harry, I06 Wright, Patrisha, 71, 78 WIIA: See Work Incentives Improvement Act Wyeth, Andrew, "Christina's World" (painting), I55 Willie: Raising and Loving a Child with Attention Deficit Disorder (Colin), 194n48 Yanagisawa, Deborah Ossoff, 205 Willson, Harold, 63-64 Yerusalim, Kinney v., 99 n76 Wilson, Bernadette B., I08 Yeskey, Pennsylvania Department of Corrections v., Wilson v. Armstrong, 103 n98 102-103 WIN. See Win Independence Now Youk, Thomas, 133 Win Independence Now (WIN), 44 Young-Bruehl, Elisabeth, The Anatomy of Prejudice, XV Winerip, Michael, 9 Highland Road, II8 n46 Wingate, John, II2 Zames, Frieda, 60-6I Winston, Charles, 2II Zebley, Sullivan v., I26 n99 Wipfler, Jane, 40 Zimmerman, Bert, 23 Wodatch, John, 50 n5, 97-98 Zola, Irving, II-12n46 Wohl, Arthur, 93 Zumwalt II, Elmo, I82 HEALTH CARE AND DISABILITY/SOCIAL MOVEMENTS Advance Praise for The Disability Rights Movement "More than a history, The Disability Rights Movement documents the wrenching evolution of attitudes: From isolation and charity to confrontation and rights; from sheltered workshops to independent living; from telethons of pity to technology's power; from 'cripples' and 'invalids' to People with disabilities! Comprehensive and well-written, Fleischer and Zames capture the substance and spirit of the disability rights movement and bring it to life." -Frederick A. Fay, Ph.D., Chair, Justice For All, and disability rights advocate for four decades "Doris Zames Fleischer and Frieda Zames take the reader on a guided tour through the still-brief history of the Disability Rights Movement, and they draw upon many first-person accounts to enrich the narrative. Although I was "present at the creation" of much of this, I still learned a great deal. A unique feature of this book is the first-hand recounting of the remarkable work of the Disabled in Action (DIA) of New York. This group never gave up in their struggle to make the nation's biggest city accessible, despite enormous odds and powerful political opposi- tion. Their story alone is worth the price of this book." -Frank G. Bowe, Ph.D., Professor, Hofstra University, and author of Physical, Sensory and Health Disabilities "Frieda Zames and Doris Zames Fleischer have crafted the most comprehensive history of the disability rights movement to date. Many firsthand sources and never-before-published inter- views make this a must-read for anyone seeking to understand the roots of today's most pressing disability rights issues." -Mary Johnson, Editor, Ragged Edge magazine © Carol Rosegg Doris Zames Fleischer has been a member of the Humanities and Social Sciences Department at New Jersey Institute of Technology since 1988. Frieda Zames, Associate Professor of Mathematics Emeritus at New Jersey Institute of Technology, has been a disability rights activist for over twenty-five years. Both sisters live in New York City. Cover design: Erin Kirk New Printed in U.S.A. ISBN 1-56639-812-6 Temple University Press 90000 Philadelphia 19122 www.temple.edu/tempress cloth ISBN 1-56639-811-8 paper ISBN 1-56639-812-6 9 781566 398121

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"The Disability Rights Movement: From Charity to Confrontation" [2001]

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