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issues
Looks Can Kill!
The Rights and Needs of Disabled People
JOURNAL OF CURRENT SOCIAL
Editor: Paul H. Sherry
Managing Editor: Mary Ellen Haines
ISSUES
Associate Managing Editor:
Jackson Ferry
Art Director: AI Arbett
VOL. 16, NO. 1 (ISSN 0041-7211) SPRING, 1979
Editorial Advisory Committee
Bernard Aronson
Verlyn L. Barker
LOOKS CAN KILL:
Barbara Bode
Walter Brueggemann
The Rights and Needs of
David S. Burgess
Ernest T. Campbell
Jacob Clayman
Disabled People
John Dixon
Joseph Duffey
James R. Dumpson
Norman Faramelli
Deborah S. First
Table of Contents
Wayne C. Hartmire
Mineo Katagiri
Carmel Carrington Marr
John R. Moyer
Editorial: Take Care
Paul H. Sherry
3
S. Garry Oniki
Looks Can Kill
Robert E. Neale
4
Ronald Pollack
Edward A. Powers
We Have Come to Understand
Jerome J. Hevey
9
David Ramage, Jr.
Access
William Sloane Coffin, Jr.
14
Howard S. Schomer
Who Are the Handicapped
Are
Martin L. Shotzberger
Max L. Stackhouse
Not We All?
Frank Bowe
16
Don Stillman
Toward Independence
Deborah Kaplan
18
Helen Webber
Baybie
Martha Sandlin
21
Herbert D. White
Barbara Williams
Into the Workplace
Sheila H. Akabas
25
Andrew J. Young
John's Story
Murnan T. Ogburn
28
We Have a Lot of Living to Do
Murnan T. Ogburn
31
Sondra Diamond
Address editorial correspondence to
We Are All Special People
35
Paul H. Sherry, 287 Park Avenue
Still a Woman, Still a Man
Jane Bogle and Susan Shaul
39
South, New York, NY 10010.
Centers for Independent Living
Gini Laurie
42
Subscription correspondence to
Journal of Current Social Issues, 10
A Checklist of Accessibility Design
Pelham Parkway, Pelham Manor, NY
Factor
45
10803. Annual subscription rate: $9.00.
Moving Into the World
Lee W. Tyler
47
Bulk subscription rates available on
Susan and Terry
Doug Magee
51
request. Second class postage paid
New York, NY 10010 and additional
The Wholeness of the Family of God Harold H. Wilke
55
mailing offices.
A Testimony to Strength: An
Interview with Curtis Brewer
60
Published quarterly by the Division of
Learning is a Partnership
Jane Weil
63
Higher Education and the American
Lights of My Life
Joann Jones
65
Missionary Association, United Church
Board for Homeland Ministries, United
Resources
68
Church of Christ, in cooperation with
the Council for Higher Education, the
United Ministries in Higher Education,
the Office for Church in Society of the
United Church of Christ and the United
Photo credits: Cover by Jackie Gill; pages 22, 23, and 24 by
Church Board for World Ministries.
Martha Sandlin; pages 27 and 32 by Steve Jackson; page 28 by
Richard Taylor Studio; pages 49, 51, 52, 53 and 54 by Doug
1979 United Church Board for
Magee.
Homeland Ministries
Howard E. Spragg, Executive Vice
President, United Church Board for
Homeland Ministries.
Wesley A. Hotchkiss, General
Secretary, Division of Higher
Education, UCBHM.
A Publication of The Pilgrim Press
Editorial:
Take Care
A short time ago I took a cab to the
dren, and is a loving and supportive
ON READER'S RESPONSE
Dayton Airport from the Bergamo Re-
wife. Their work together in the associa-
treat Center in Dayton, Ohio. The cab
tion for the deaf is drawing them ever
With the next ISSUES, Summer '79, we
ride took about thirty minutes so the
more-closely together, and is a source
would like to start a Reader's Response
cabbie and I had time to talk at some
of great satisfaction. The cabbie's
section, perhaps a page or two of your
length. In the course of the conversa-
words were reassuring in a period when
reflections or opinions-expert or oth-
tion, he told me that he and his wife
so many couples are struggling to hold
erwise-about what we print. We say
were about to leave for a convention for
their marriage together.
Reader's Response because we want
the deaf in Rochester, New York. His
this to be more than a letters-to-the-
wife is a deaf mute, and about ten years
I relate this brief conversation because
editor column: we want it to be your
ago the two of them were instrumental
it helps illustrate many of the themes
response to each other.
in helping build an organization for the
addressed in this edition of ISSUES:
deaf. They have been attending the
The topics we address affect us all, and,
organization's conventions on an annu-
-The disabled, like all of us, are
while each edition of ISSUES touches
al basis since then, and were looking
unique children of God whose lives
upon a new theme, these are not mutu-
forward eagerly to this convention-
are in many ways very different and in
ally exclusive nor are they without mutu-
vacation.
other ways are quite the same;
al cause and concern. Reader's Re-
sponse is your chance to speak your
The cabbie was in a talkative mood and
-The disabled, like all of us, have
mind or heart while enhancing the conti-
began to tell me about his wife and
individual needs which can be met if
nuity of our investigations together.
family. They were married seventeen
we reach out in loving care;
years ago and have three children-a
As a reader of ISSUES, you have
sixteen-year-old son interested in ani-
The disabled, like all of us, have a
thoughts, feelings, anecdotes, experi-
mal husbandry who already has highly
remarkable God-given potential
ences, or advice about what you read in
developed veterinary skills; a rebellious
which can be released for fulfillment
these pages. We encourage you to send
thirteen-year-old son who is in danger
and service;
them, bearing in mind that space is
of failing this year in school; and a nine-
limited. Send whatever you deem ap-
year-old daughter who is everything her
-The disabled, like all of us, need to
propriate to: Reader's Response, Jour-
father ever hoped she would be. He
love and be loved if we are to live.
nal of Current Social Issues, Room 710,
sounded like a typically concerned fa-
287 Park Avenue South, New York, NY
ther.
10010.
This ISSUES illustrates these themes.
The cabbie was especially eager to talk
The issue does not over-romanticize;
One other thing. This ISSUES is printed
about his wife. When he first met her,
rather, it tries to speak candidly about
with justified type. This means we get
she was insecure and withdrawn, but no
the difficult and oppressive situations in
more words to the printed page without
more. He told me, with great pride, that
which disabled people often find them-
sacrificing the openness of our graph-
he "had been good for her." He drew
selves. But neither does the issue wal-
ics. This change follows two others with-
her out of her shell, gave her a sense of
low in despair. Rather it points to ways
in the last year: a new logo last spring,
her many abilities, helped her over a
by which a disabled person can be a tull
and a smaller typeface last summer. We
period of five years to learn to lip read,
and contributing member of society so
hope you agree these changes improve
and in general helped her see that her
that all our lives can be enriched.
the quality of this journal.
disability need not prohibit a fulfilling
life. He spoke most, however, about
When the cabbie dropped me off at the
JF
how much his wife means to him. Enthu-
airport, he told me to "take care."
siastically, he told of her position in a
That's good advice for all of us as we
local Dayton bank operating a machine
seek to minister to each other-take
which few others in the area have mas-
care.
tered. She runs the household "like
clockwork," cares deeply for their chil-
PHS
3
Looks Can Kill
Robert E.
Neale
How do I put my arm around the shoul-
It is our inclination to affirm: "There is
negative experience. It is a movement
der of a colleague who has no arms?
only one suffering-tha is to be alone."
away from despair and toward hope in
How do I embrace an acquaintance
Hell is neither other people nor the self,
relationship. The rage of "Looks can
whose body is encased in a wheelchair?
but disconnections between self and
kill./I am looking at you" is energy
And how do I clasp the hands of my
other. The infant cries when she cannot
directed outward for the sake of con-
friend who uses crutches, holding one
see her mother and Jesus cried when he
nection. It is an affirmation of what must
of them with a misshapen appendage?
could not see his Father. And the dis-
come to pass between human beings.
From a distance. I do not touch them. I
abled-the 35 to 45 million people in
Loneliness is not the only suffering, not
look at them. And they look at me. One
our country who are physically disabled,
the worst suffering, and it can be
of them has spoken about it. Ron
deaf or have hearing impairments, blind
redemptive suffering.
Whyte's credo, "I Believe," tells me:
or are visually impaired, mentally dis-
abled, institutionalized, or home-
The intent of this essay is to explore
You can get Muscular Dystrophy from
bound-cry out also as the invisible
loneliness as catching. The occasion is
a toilet seat.
who cannot see or be seen. For all of us,
the lack of relationship between the
Paraplegics are contagious.
full vulnerability is the remembrance,
disabled and the able. The theme is that
Cancer can be transmitted by sex.
experience, and anticipation of loneli-
loneliness is a condition of separation
Never touch a dead person-Death is
ness. The one human suffering is to be
and search which leads to companion-
catching.
alone and the one human cry, "Why
ship, and that getting caught by it is a
Good people die young.
hast thou forsaken me?"
valuable experience. The goal is such
Looks can kill.
companionship between the able and
/ am looking at you.
But this is not so. Our inclination is devi-
disabled. There are looks of loneliness
ous and our conclusion erroneous.
that can kill. These must be. To be so
This is absurd. But it is easier to look at
Loneliness is not the only suffering, not
eyed is to have our own loneliness
my friend's poem than at him. I see
the worst suffering, and not even an
uncovered and our willful blindness de-
whimsey, anger, and, most of all, these
entirely negative experience. When the
stroyed. But there are also looks that
graceful words that clash so with his
condition of loneliness is so fostered
kill loneliness. These too must be.
physical appearance. The poem is a
and yet equally concealed, as it is in our
window more tolerable than the eye.
society, it becomes inflated and all the
What is this condition that is so conta-
"Looks can kill." This is the last of his
more difficult to understand. Loneliness
gious? It is hard to say. It is hard
list of superstitions. We are prepared to
is not the only suffering. It is a discrete
because thinking about it recalls the
dismiss it along with the others, but are
psychic state which does not replace
experience and we would prefer not.to
unable. He is loooking at me, at all of us,
such sufferings as anxiety or depres-
We are apt to consider the experience
in this poem. If we can return his gaze,
sion. And there are social conditions of
as baffling, terrifying, and alien, as what
we glimpse something we do not care to
poverty, class and racial discrimination
occurs when we are not really our-
see directly. Loneliness. The credo is: "I
that are sufferings in their own right. To
selves. Perhaps the poem, "I Believe,"
Believe I'm Lonely." This is illicit com-
consider loneliness as the only suffering
is wise in being so indirect about it.
munication. Muscular Dystrophy, para-
is flight from the complexity of suffering.
Others have been more direct. Speak-
plegia, cancer, and death are infectious
Nor is loneliness the worst suffering.
ing of an old man living in isolation on a
because loneliness is. The looks of lone-
Consider the infant who no longer cries
winter night, Robert Frost records: "A
liness can kill. We cannot look into the
out, but has succumbed to the silence
light he was to no one but himself."
eyes of the disabled because we know
of apathy. She is beyond loneliness in
Quite different from this quiet chill is the
that to see their loneliness is to uncover
the worse condition of despair. What if
fiery anguish of the Psalmist:
our own. How difficult it is when they
Jesus had not cried out to his Father,
insist upon looking at us. How under-
but become dumb in spirit? It is at least
Those who see me in the street
standable it is that we do our best to
possible to wonder if the resurrection
Hurry past me,
teach them to avert their gaze or close
would have occurred. Living beyond
/ am forgotten, as good as dead in
their eyes. But "superstition" prevails.
loneliness is the suffering involved in
their hearts,
Even the blind can look at us. No inocu-
forfeiting humanity. Finally, it cannot
Something discarded. (Psalm 31)
lation is possible. Loneliness is catch-
even be claimed that loneliness is only a
ing.
Robert E. Neale is Professor of
Psychiatry and Religion at Union
Theological Seminary where his
teaching includes aging and reli-
gious symbolism. He has written
extensively in the area of death
and dying and is presently writing
on the subject of loneliness and
companionship.
And those poets who are quite without
One can be isolated without being des-
the non-action of apathy. With hope, the
capacity to protect themselves may be
olated. However, we may experience
search continues. What is loneliness? It
even more direct. Here is the question
isolation for a long time without being
is the experience of searching.
of a schizophrenic:
very aware of it. When awareness OC-
curs, loneliness may flood into con-
Loneliness is a dynamic state with two
And is there anyone at all?
sciousness even though social support
aspects, each of which must be present
And is
has been continuous at its low level over
for it to occur: recognition of separate-
There anyone at all?
a long period. Therefore, it is either an
ness and the attempt to overcome it.
/ am knocking at the oaken door
exterior or an interior change that
Without the recognition of separate-
And will it open
causes awareness of an absence. What
ness, it is clear that loneliness does not
Never now no more?
is loneliness? It is the recognition of
occur. But the recognition may not lead
/ am calling, calling to you-
separation.
to loneliness when the individual either
Don't you hear?
experiences separation affirmatively or
And is there anyone
Loneliness is more than this. The psy-
despairingly. Therefore, loneliness is a
Near?
chiatrist, Harry Stack Sullivan, defined it
dynamic state. Neither a wallowing in
as "the exceedingly unpleasant and
despair nor an exultation in victory, it is
And does this empty silence have to
driving experience connected with inad-
a full engagement in the battle to partic-
be?
equate discharge of the need for human
ipate. It may end in pseudo victories or
And is there no-one there at all
intimacy." The absence is noted, but
in apathetic withdrawal, but while loneli-
To answer me?
the stress of the definition is on need
ness exists, the individual is devoted to
and drive. The point is that this aware-
a life and death cause with maximum
/ do not know the road-
ness of absence fosters a restless drive
use of human powers. And since loneli-
/ fear to fall.
for restoration or replacement. Sulli-
ness is a common, daily experience, the
And is there anyone
van's definition has the merit of pointing
battle is a continual aspect of human
At all?
out that loneliness is not a passive and
life. It is a dynamic that is related to
static condition, but a most active one.
much of our daily activity. All of our
To read this poem aloud-to use one's
It is a searching for relationship, an
behavior is overdetermined, has many
own voice in asking, "And is there
attempt to right the wrong of absence.
causes and serves many functions, fun-
anyone at all?" to hear the ensuing
Sooner or later, loneliness may be re-
damental ones being elimination of
silence. This we cannot bear. So we
placed by apathy. One gives up the
loneliness and pursuit of participation.
retreat from the expression of mood to
search. When this happens, the individ-
What is loneliness? It is full engagement
consider more abstractly the dynamics
ual is isolated, but not lonely. Loneli-
in the battle to participate. To be lonely
of loneliness.
ness includes hope. The last lines of
is to be between denial and despair in
Siegfried Sassoon's "Alone" express
precarious, but realistic, hope for rela-
Perhaps the initial awareness we have
this:
tionship.
when lonely means just that something
is wrong is the awareness of absence.
Alone.
The word is life endured
This basic definition of loneliness can
And this sense of absence is usually,
and known.
be expanded in many ways, three of
but not always, social in nature, a refer-
It is the stillness where our spirits
which will be summarized here: the
ence to absence of relationship to one
walk
causes of loneliness, the objects of
or more human beings. Typically, we
And all but inmost faith is
loneliness, and the need for balance
are aware that this is the result of a
overthrown.
between separation and search. A re-
change-loss of relationship. Continu-
view of these concerns will remind us of
ity of social support has been broken.
The experience is pervasive here. The
the complexity of a phenomenon that
What is important is not the absolute
poet's whole life is perceived as lonely.
we are all too prone to simplify in our
level of social support, but its continu-
Even so, "inmost faith" remains. This
eagerness to flee it.
ity. Those who experience the death of a
hope is the source of the action to
spouse or a divorce may be more lonely
restore relationship. Without it, there is
than either the married or the single.
The mood of loneliness is one, but it can
own personality and one's own society
Finally, the fifth object for loneliness
be the consequence of different causes
in fostering unnecessary suffering.
and relationship is the world as a whole.
and experienced at different levels. The
Those who focus only on the unneces-
There is a world loneliness that occurs
first level is primary loneliness. This is a
sary levels of loneliness can be prone to
even when we may have relationships
discovery of the human condition as
the temptation to abolish all such suf-
with some of its parts. Life as a whole
being such that one is always separate
fering. The four levels remind us that we
can appear so foreign as to engender
as well as participant. Such loneliness is
can neither deny nor despair over lone-
an indefinable restlessness. The ques-
an inevitable and necessary aspect of
liness but must fight the battle even
tion, as Chesterton noted, is "How can
human existence. It is not dependent
though the war is unending.
we contrive to be at once astonished at
necessarily upon the loss of a relation-
the world and yet at home in it?" As
ship, but on our capacity to perceive the
Loneliness also has different objects.
"strangers in a strange land," we be-
self as separate. However natural, this
We can become lonely with regard to
come pilgrims in search of the world as
is not an awareness we tend to seek and
almost anyone or any thing. As the
companion. This is the avowed business
cherish. The second level is the loneli-
levels of loneliness refer to the depth of
of formal religion, but the loneliness
ness of social discontinuity. This is the
it, so the objects of loneliness refer to
may occur in anyone who is moved to
common understanding of loneliness as
the breadth. These are five possible
wonder about the whole. This brief
being due to actual losses of objects
types of relationship. The first two are
review can remind us of the danger of
and persons. Such disruptions are natu-
those we commonly think of with regard
assuming we know what any concrete
ral and inevitable, however disturbing.
to loneliness-the individual and the
instance of loneliness is about. It may
The loneliness is pervasive, but also
group. We are aware of the driving rest-
pertain to any one or more of the possi-
occasional and capable of being over-
lessness and yearning search for rela-
ble relationships. And the discovery of
come.
tionship when continuity with either of
one kind of relationship will offer little
these relationships has been broken.
comfort about, and fail to substitute for,
The third level is problematic loneliness.
Being without an individual gives rise to
the other kinds being sought. The fun-
This refers to causes of loneliness that
pervasive apprehensiveness over a
damental reminder is that our need to
are unnecessary, although common, in
world and self that are perceived as
be so firmly embedded in existence
the self or society. Some individuals and
barren and hollow. Being without a
renders us prone to a great variety of
some societies are loneliness-prone. In-
group relationship fosters boredom,
separations and searches. Our loneli-
dividuals may be afflicted with such
aimlessness, and a sense of being on
ness can be of unimaginable breadth.
physical appearance or early formation
the margin of social life. The end of a
The unending battle we must fight is
of personality that others are led to
marriage, by death or divorce, may give
waged on a variety of fields.
keep their distance by means of ridicule
rise to both objects of loneliness. Either
or ostracism. Of course, problems of
of the two disruptions may be the most
Finally, in amplifying the basic definition
the self are partially created, and cer-
significant. In a society which stresses
of loneliness, we consider the issue of
tainly matched, by problems in society.
the one-to-one relationship so strongly,
balance between separation and
The loneliness-prone individual is never
we are inclined to play down and then
search. Our experience of loneliness
the only cause of the loneliness. It
be surprised by the power of a social
includes both poles, but we tend to
requires two or more human beings with
network. Both objects for relationship
verge more on the side of one or the
one or more in absentia. There are
are essential and neither is a substitute
other. To function with balance is to
societies and groups within societies
for the other.
avoid both denial and despair and to
that are destructive of the loneliness-
achieve realistic hope. Unbalanced
prone because of the high degree of
The third object for relationship is the
loneliness diminishes the latter and in-
social discontinuity present. Class and
material world. Our need and our crea-
creases the denial and despair. One
racial divisions, breakup of family and
tiveness in fulfilling it are obvious.
whose loneliness is most characterized
community life, mobility, and the condi-
Houses, neighborhoods, pets, plants,
by recognition of separation is not real-
tions of rapid cultural change-all are
automobiles, the toys of all genera-
istic about the possibilities of searching.
characteristics that suggest a loneli-
tions-these are objects from which we
The separation is inflated. This is natu-
ness-prone society. When both society
can become separated and for which
ral at the time of discovery of the sepa-
and individuals are prone, unnecessary
we will search. We are all collectors.
ration, but continued inflation indicates
loneliness becomes common.
Such materialism is profoundly human.
unreality about the relationship. The
We have bodies in space and so must
most obvious example is the abnormal
The fourth level is that of faulty re-
connect ourselves to it by means of
grief of the bereaved which typically
sponse to loneliness. This is the situa-
objects. The material world is never to
indicates difficulties in the relationship
tion in which the already lonely com-
be a substitute for the world of a person
prior to the death which are masked by
pound the problem by their responses.
or people, but regarded as a companion
idealization.
It involves pampering oneself, disparag-
in its own right. The fourth object for
ing others, opting for casual sex, keep-
relationship is history. Because we can
In a similar way, imbalance on the side
ing busy, and all other such arrange-
recall the past and anticipate the future,
of search raises the question about how
ments we devise which both ward off
to not have a relationship to time is to
much genuine hope exists. Human be-
the awareness of loneliness and excuse
experience oneself as disconnected
ings, like other animals, can be so
it. Rather than resolve or diminish, they
and lonely. We remain lonely, not know-
shocked that they are immobilized. But
actually increase loneliness. This brief
ing who we are and what we are worth,
often they are shocked simply into ran-
review suggests that there can be a
until we find and make friends with our
dom activity. In the immediate after-
danger in acknowledging only one
beginnings and endings. To lose the
math of a severe separation such as the
cause. To dwell only on primary loneli-
loneliness is to discover relationship
death of a loved one, there is often a
ness is to avoid the role played by one's
with the generations.