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SEXUALITY AND THE MENTALLY RETARDED
SECTION I
ORIGINAL MONOGRAPH
EDITORS: KARL E. THALLER, PH.D.
AND
BARBARA D. THALLER, M.A.
SEXUALITY AND THE MENTALLY RETARDED
SECTION 11 - - COMPANION MONOGRAPH
CONTENTS
Page
Section
i INTRODUCTION
PRESENTATIONS
Laurie Rockett
1
STERILIZATION OF MENTALLY RETARDED FEMALES IN NEW YORK STATE
11
Murry Morgenstern
6
SEXUALITY AND THE MENTALLY RETARDED.
James Orr
17
THE REPRODUCTIVE CAPACITY OF THE MENTALLY RETARDED
Adler J. Muller
22
VERMONT'S PLAN FOR SPECIAL EDUCATION IN THE REGULAR CLASSROOM
11
James F. Winschel
24
TEACHER TRAINING, MENTAL RETARDATION, AND THE PLAGUE
WORKSHOP HIGHLIGHTS
Thomas Coughlin
THE MENTALLY- RETARDED CITIZEN AND THE LAW ENFORCEMENT
33
PROCESS
Maryclaire Sheriwn
34
COMMUNITY PARTICIPATION
Janet Summerville
36
BIRTH CONTROL AND THE MENTALLY RETARDED
Wayne L. Pelkey
38
COMMUNITY SERVICES FOR THE MENTALLY RETARDED
41 THE CONFERENCE PROGRAM
SECTION 11 - EDITED BY: V. Sue Davis, M.S.,
Project Coordinator
and
William 2. Davis, Ph.D.
SEXUALITY AND THE MENTALLY RETARDED
Section 1 - - Original Monograph
Contents
Page
i
INTRODUCTION
Section
SELECTED PRESENTATIONS
Sol Gordon
1
TELLING IT LIKE IT IS.
Winifred Kempton
14
MARRIAGE-PARENTHOOD-AND BIRTH CONTROL FOR THE MENTALLY RETARDED.
I
Joseph Meyerowitz
30
BRIDGE OVER TROUBLED WATERS
Willie H. Scarborough and Margaret Ortinau
SOME CONSIDERATIONS IN PLANNING A SEX EDUCATION PROGRAM FOR THE
49
TRAINABLE MENTALLY HANDICAPPED
Joseph T. weingold
65
SOME CONSIDERATIONS ON SEXUALITY AND THE MENTALLY RETARDED
75 ATTITUDES TOWARD SEXUALITY OF THE MENTALLY RETARDED.
Karl E. Thaller
AN INTRODUCTION TO GENETIC COUNSELING WITH A SUGGESTED APPROACH BY
80
PLANNED PARENTHOOD OF NORTHERN NEW YORK, INC
James Orr
90 OUTLINE FOR FAMILY PLANNING COUNSELING PROGRAM OF SUNMOUNT STATE SCHOOL.
Richard L. Francis
I
92 THE CONFERENCE PROGRAM
SECTION I - EDITED BY: Karl E. Thaller, Ph.D.
and
Barbara D. Thaller, M.A.
Planned Parenthood of Northern New York, Inc.
Central Office
161 Stone Street - Annex
Watertown, New York 13601
August 1975
315/782-0481
-FIRST PRINTING COMBINED MONOGRAPHS-
D.
SEXUALITY
AND THE
MENTALLY
RETARDED
PRINTED IN THE UN'
STATES
'Life, liberty and the pursuit of happiness' are traditionally
espoused rights of every American save possibly all those who do not
quite measure up to normative standards of social behavior.
While this statement may seem provocative to some, those who have
lived any length of time with the problems of sexuality and the
retarded within our society will be most apt to accept the statement
as a truism.
It is generally recognized that many groups within our society
have unique difficulties in dealing with sexuality and concomitant
problems such as family planning; however, these problems are accen-
tuated for the retarded. Planned Parenthood of Northern New York
determined that special attention should be focussed on the problem in
order that adequate support services be given these individuals with
special needs.
Planned Parenthood received a grant from the Office of Economic
Opportunity (OEO) to pursue this topic. On September 21 and 22, 1972, the
OEO-sponsored grant made possible a conference which was held at the
State University of New York College at Potsdam. The goal of the con-
ference was to examine the topic of sexuality and the mentally retarded
within a framework designed to provide sound, factual and procedural
information which would serve as a catalyst to the improvement of ser-
vices available.
Issues concerning sexuality and the mentally retarded are of con-
siderable importance to our society as we are now in the process of
i
radically changing ways in which we deal with the retarded. The anti-
cipated beneficiaries of the OEO-sponsored conference would not only
be individuals who might be labeled as retarded but their families,
personnel of auxiliary agencies serving these individuals and other
members of their communities.
The purpose of Planned Parenthood of Northern New York in request-
ing OEO support in sponsoring the conference was a recognition of fail-
ure in dealing with individuals who were considered to be retarded,
and in providing appropriate information on birth control for these
individuals. The problems recognized by Planned Parenthood included
difficulty in communicating, lack of understanding of the problems of
the retarded and concern as to methods which would be most properly
advocated for individuals who had problems in understanding procedures.
The concern was increased because Northern New York is generally
regarded as a culturally deprived area and thus Planned Parenthood
found that many of its potential clients were culturally retarded as
well as organically damaged with resultant retardation.
Additionally, Planned Parenthood of Northern New York surveyed
Jefferson, Lewis, St. Lawrence and Franklin Counties and could find no
evidence of family planning services being specifically offered to the
mentally retarded. It was further determined that there was limited
information available concerning the best ways to gear family planning
services to the needs of the mentally retarded.
ii
NEW YORK STATE
TOTAL SQUARE MILES
47,834.0
Characteristics of Region by Population Area and Poverty Rate
Franklin County
1,673.8 aq. miles
ST
BRAWNIN
St. Lawrence County
2,767.8 sq. miles
LAWRENCE
Jefferson County
1,293.9 sq. miles
DEFFERS
Lewis County
1,291.3 sq. miles
7,020.8 eq. miles
LEWIS
NEW YORK
1970
Population
X of Families with Income
below Poverty Lovel
Franklin
43,931
14.3
St. Lawrence
111,991
10.7
Jefferson
88,508
9.9
Lovis
23,644
268,074
12.5
1.6% of the population of New York State resides in these four counties.
Estimates of the number of mentally retarded in Northern New York
are based on the general estimate of three per cent of the population
which would amount to 9,000 mentally retarded individuals. Six per
cent of this number would be estimated to be trainable mentally
retarded (I.Q.: 36-52), and 89 per cent would be estimated to be educable
mentally retarded (I.Q.: 53-78). Since it was felt that the educable
mentally retarded should be the primary target group for family plan-
ning services, approximately 8,000 middly retarded individuals would
benefit from the new services developed within the confines of the grant.
i
The objectives outlined in the grant for contributing to the edu-
cation of individuals working with the mentally retarded were as
follows:
A. To bring the best information regarding the
sexuality of the mentally retarded to parents,
interested individuals and professionals in
Northern New York.
B. To provide individuals with a sound basis to eval-
uate their own attitudes regarding sexuality
with special reference to the mentally retarded.
C. To prepare individuals to serve as catalysts
in devedoping programs to meet the sexuality
needs of the mentally retarded in their own
communities.
D. To evaluate the impact of participation at the
conference on Sexuality and the Mentally
Retarded in terms of the new services and pro-
grams developed and the identification of unmet
sexuality needs in this area.
Within our American society, many cultural variations and atti-
tudes exist and individual experiences vary to such an extent that the
topics of sexuality and retardation are both still at present emotion-
ally laden issues and when coupled become even more complex. Addi-
tionally, the vantage points of individuals dealing with the coupled
issues vary greatly whether they be mentally retarded individuals,
professionals providing services, or members of society in general.
It was attempted through this conference to provide a framework for
the presentation of many points of view and to provide an atmosphere
in which individuals representing various interests might work together
in other grant-related activities to the mutual benefit of all.
iv
The purpose of this monograph is to present an overview of that
conference and to present information gleaned from the conference in
the hope that it will be of benefit to individuals directly involved
with the problems and ultimately to our American society in general.
Conference design
The OEO-sponsored conference was designed so that participants
attended as a whole several sessions in which speeches were presented
by people from various fields concerned with the problems of sexuality
and the retarded. They later broke into small discussion groups to
probe further issues raised during the course of the presentations.
Participants included representatives of OEO-sponsored community
action groups, parents of individuals labeled as retarded, staff and
volunteers associated with Planned Parenthood, the Association for
Retarded Children, and representatives of community groups who had
involvement with filling the needs of retarded individuals and their
families.
Evaluation of the informational flow of the conference was done
through a series of questionnaires. A summary of their results is
included at the end of this monograph.
Unfortunately, it is impossible to reproduce all speeches deli-
vered during the conference because of space limitations. For that
reason, selection of those that are reproduced in this monograph was
based on a choice of presentations which were most representative of
the varieties of attitudes and influences within the field which
V
affect our society's dealing with people who are labeled as retarded.
It is hoped thus that people unable to participate will nevertheless
be able to acquire for themselves a perspective of the issues involved
in dealing with problems of sexuality as they face the retarded.
Legalistic framework
As a background for understanding currect concerns in regard to
the retarded and their sexuality, it is significant to note that leg-
islation has traditionally denied rights to mentally retarded indivi-
duals - rights which are held by others within a society. Legislation
enacted in 1972 to become effective in January of 1973 in New York
State contains the following provisions:
"Not withstanding any other provisions of law, no
person shall be deprived of any civil right, if in
all other respects qualified and eligible, solely
by reason of receipt of services for a mental
disability nor shall the receipt of such service
modify or vary any civil right of any such person,
including but not limited to civil service ranking
and appointment, the right to register and vote at
elections, or rights relating to the granting, for-
feiture, or denial of a license, permit, privilege,
or benefit pursuant to any law.
corres-
pondence addressed to public officials, attorneys,
clergymen and to the mental health information ser-
vices shall be unrestricted and shall be sent along
promptly without being opened." (Recodification of
Mental Hygiene Law-State of New York, 1972)
In these words of one Conference participant, New York Senator H.
Douglas Barclay, "In effect, what this legislation has done is giving
a full range of civil rights back to the mentally retarded." It is
not the purpose of this monograph to elaborate extensively on the law
vi
and retardation but rather, in looking at this area, to demonstrate
that indeed there has been a tendency within society to abuse the
rights of retarded individuals even to the point of legal strictures.
Current trends are to restore these rights.
During the conference, William Collins, St. Lawrence County
Prebation Director, called attention to some of the feelings that are
often present for concerned families of retarded individuals. He
recounted to conference participants impressions he received after
discussing with parents the need for birth control services for
retarded individuals, "The appropriateness of an outside agency such
as Planned Parenthood delivering this (birth control) service to a
retarded person seems worthwhile considering, in that this might more
appropriately be dealt with by such an agency rather than leaving the
total responsibility with the parents of a retarded person. To some
extent in my discussion with the parents, I sensed their skepticism
about the sincerity of our concern. Many of them pointed to numerous
instances in their experiences when dealing with outside agencies
whereby the agency or institution was willing only to provide the
barest minimum service. They found that time and again to get ade-
quate services for their youngster they had to make serious demands
and
wather
sections
dependence
retarded
dividuals, "The parents, the families of the retarded child are aware
vii
The normalization principle
The normalization principle is reflected in the portion of the
Recodification of the New York State Mental Hygiene Law quoted previ-
ously. Its thrust is simply that retarded individuals have the right
to lead more "normal" lives than has previously been possible. Already
apparent in our society are the appearance of half-way houses, efforts
on the part of institutions to reduse their populations by placing
residents within the community in more typically normal living situa-
tions (in some cases akin to foster care situations) and for those who
cannot leave the institutions, the creation of a cottage-family situa-
tion replacing the old large wards of grouped individuals. In addition,
sheltered workshops and other efforts to provide viable employment
opportunities to the retarded within the community are receiving new
impetus.
Hand in hand with this philosophical and actual change in the way
in which retarded individuals are expected to live their lives comes
a change in the view held of their interpersonal relations, particu-
larly in the area of sexuality.
Sexual expression quite often leads to pregnancy. Pregnancies,
when unwanted and unplanned for, often create indigent adults and chil-
dren within our society. The children often are not cared for properly
and grow up to increase the ever-burgeoning welfare rolls.
If, in effect, true normalization is to occur for retarded indivi-
duals, sexual expression must have its role in the life space of
viii
individuals labeled as retarded as well as those labeled as normal.
However, if this normalization is to be a success for the retarded as
well as for the so-called normal society, it is apparent that particular
concern must be focussed on the preparation of many factions of society
to deal with the problems of sexuality as they face the retarded.
One has only to view the speeches which follow to recognize the
divergence of the frames of reference of participants. And yet a com-
mon purpose, concern with sexuality and the retarded, created a frame-
work under which divergent people with divergent interests and
divergent backgrounds were able to work together.
ix
1
Telling It Like It Is
Dr. Sol Gordon
When I said I was coming to the North Country, everybody warned
me and said "Oh, you've got to be very careful because this is con-
servative territory." I'm not going to be careful. I'm going to say
what I want to say and I can say it here and I can say it in any place
in this country. So you're not going to have a careful presentation.
You're going to have a presentation that says "Let's tell it like it
is and let's be a little couragedus because now is the time." Every-
body in recent times has descovered that the mentally retarded are
human--this is a recent discovery. But what we have not been able
to come to terms with is that when you're human, you are also sexual.
I would like to declare this: Mentally retarded people are also
sexual and they have the same sexuality--the same quilt, the same
hangups, the same inhibitions and the same needs for sexual expression
as we have.
Not too long ago, I was invited to an institution for the men-
tally retarded. It had been an institution where there was only one
sex. What was the great problem? Why did they want to invite me?
The problem when there was only one sex in the institution, was homo-
sexuality. What were we going to do about homosexuality in a one sex
institution? But that was not the problem because the latest thing is
to have both sexes in institutions. What's the problem now? The
2
problem is heterosexuality. Within 24 hours, without any sex educa-
tion, whatsoever, 90% of the boys switched from being homosexual to
heterosexual. I studied the question very carefully and I came up
with this startling conclusion--the only way you can reduce homosex-
uality is to risk heterosexuality. They tabled it. But what was the
real thing everybody was concerned about? What was the hidden pre-
occupation? The hidden preoccupation was that mentally retarded people
are sexual! They express sexuality like the rest of us, in many diff-
erent ways. Some of us express sexuality by sexual intercourse, and
some of us express sexuality by masturbation. When I was speaking to
the staff, they said that the entire energy of the staff was devoted
to preventing the young residents from masturbating. There was no
money for recreation and there was no money to improve the facilities.
There was no money for anything in that institution but hhere was
money to set up a whole new lighting system for $50,000 so that there
shouldn't be any dark corner where the young people and the older
residents can go and masturbate. And that was not enough. The
director of the institution found that with his tremendously, fantas-
tically, successful lighting system he did not succeed in wiping out
masturbation. So he started to cut down the bushes and even that
didn't work. So he began to thin out the trees in the forest. What
happened next involved a nurse who was a conservationist. She got a
court order against the Superintendent preventing him from cutting
down the trees.
3
We're going to have to face the fact that masturbation is a nor-
mal expression of sexuality whether you like it or not. And most of
us like it. It happens to be the latest thing. It's modern. Every-
body says masturbation is now a normal expression of growth and
development. Parents say it now and the Church says it now. The
teachers say it now. When I was growing up, it was a different story;
you got acne from it, you got tired blood, became insane, or blind.
But we were pioneers in those days! We did it anyway, we suffered,
but we came through. So why is it still such a big hangup--not only
in relation to the mentally retarded but in'relation to ourselves?
Why, with everybody being so modern about it, is it still such a big
hangup?- Everybody says it's okay; it's a normal developmental stage
if you don't do it too much. But nobody in the United States knows
how much is too much. Does anybody know? How much is too much? Once
a year, twice a week, three time a day? Once is too much if you
don't like it. Masturbation is a normal expression of sexuality if
you enjoy it, and-if it's voluntary. It's not anybody else's business.
What right have we to discourage anybody from masturbating?
Especially, what right do we have if it just may be that person's only
expression of sexuality? What right do any of us have to interfere
with the private sexual life of anybody if it doesn't interfere, if it
doesn't exploit, if it doesn't hurt anybody? That's what we have to
come to terms with, and if we cannot come to terms with that, we cannot
and should not work with the mentally retarded or anybody. We won't
4
be able to settle that question unless we can feel comfortable with
our own sexuality, with our own expression of sexuality.
Many of us are hypocrites and that's why I say sometimes we have
to make it look good. Sometimes we have to pretend. Honesty is some-
times another way of expressing hostility. When is the last time
somebody said to you "how are you" and you told him the truth? When
is the last time when you told somebody the truth that they under-
stood and appreciated it and didn't accept it as hostility? They
don't want to know. And so sometimes we communicate politically. I
understand that and that's why I want to spend most of this time to
say tell it like it is.
Whenever I talk in an institution, I°m told, "The staff is
very conservative. Be very careful what you say." Well, why is the
staff conservative; how does the staff become conservative? In insti-
tution after institution when you have a "progressive" member of the
staff, how long does he last? When somebody has something new and
dynamic to say (which we are finding now with the conscientious
objectors coming into the institutions), how long do they last? It is
the administrator who is responsible because he determines that there
has to be a conservative staff, "Oh, we can't have sex education in
our institution. 1 The parents will revolt." I challenge any admini-
strator to announce "there will be sex education in our schools and if
you do not want your child to enter this institution or this school, do
not enter. Do you think one parent in the entire United States will
5
drop out of the waiting list? We have no courage. Whenever I speak
before audiences about sex education for the mentally retarded, it's
always the largest meeting that they ever have. Parents want to know.
Staff people want to know. And young people want to know. We've been
operating in the area of sex education in general with both the normal and
the mentally retarded on the assumption that the less they know
the better off they are. That's a false assumption.
The birth rate in this country is going down in every age cate-
gory. Among the rich and the poor, among the Catholic and non-Catholic,
among the welfare and the non-welfare, it's going down in every age
category except among teenagers. The birth rate is zooming among
teenagers in this country. We have a serious situation in this
country. Two hundred thousand children gave birth to children last year.
The average age in Syracuse last year of teenagers giving birth went
down from 15½ to 14½ 'years.
The institutions for the retarded, and the parents do not provide
their children with protection, do not provide them with knowledge
that they can absorb and the result is people in the institutions say
"Well, I don't think Susan is ready to go out in the world because
Susan is so vulnerable, so retarded. You know there's so much pres-
sure within the State government to get those with I.Q.'s above 50 or
60 out into the community. Don't you know the latest thing is to get
them out into the community?" But what has that institution done?
Has that institution said anything about sexual education? Has it
6
prepared them for birth control? Has it perpared them for life in
the community? No. Within 3 months, Susan is pregnant and the insti-
tution says, "See I told you, Susan wasn't ready."
Of course Susan is not ready. Because we guaranteed and insured
her ignorance. We have arranged it; we have supported it; we have
stimulated her. We go into institutions and the staff says, "Oh what
should we do? Every girl wants to have a Baby. Every girl want to
be a mother. Are you against motherhood?" So I say, "Yes, if you
cannot mother a child, you should not be a mother. If you're going to
neglect and abuse a child, you shouldn't be a mother. If you cannot
take care of your own child, you should not be a mother." When you
listen very carefully to these institutions and hear the staff say,
"Oh wait until you have a baby, Just wait until you have your own
babies. You'll see what it's like. It's great when you get married."
They're kidding them. They're preparing them. They're conditioning
them to motherhood, to fatherhood. They're playing games with them,
and they're seducing-them.
Why can't we say to young people who are mentally retarded, "Oh
it's not simple to have babies? It's not always a good idea. It's
a lot of trouble. Do you know how much you have to earn in order to
take care of the baby?" Why don't we condition them for some reality?
Most mentally retarded people marry, and s'ome successfully. Ninety
per cent of all the mentally retarded are outside of institutions.
The most suceessful marriages among the mentally retarded are when
7
there 'are no children. About half the marriages break up when there's
one child and almost all of the marriages break down when there's more
than one. We have a lot to think about and often we underestimate
what mentally retarded people can appreciate and understand.
Not too long ago when I was visiting an institution, I was given
the VIP treatment. All the higher-ups of the institution were escort-
ing me when one young man about 19 years old intruded into this crowd
and said to me, "Hey you, what's your name?" I didn't look at him, I
didn't say anthing and we continued walking. But he was there and
they tried to shoo him away. But he was not shod-away-able. And this
young man intruded again, and said, "Hey you, you married?" I didn't
look at him. I didn't say anything. They thought that they had.
invited some lemon. "Here's a guy who is supposed to know something
about mental retardation; he's not even nice to them. He's not even
polite. He doesn't respond to an ordinary mentally retarded person.
The least he could do was to say hello." They were so embarrassed for
me. He intruded again 'and he said, "Hey you, what's your name?" And I
looked up at him and said, "I'm sorry, but I don't know who you are,
and I don't like to be addressed this way." He said to me, "Oh, I'm
sorry, My name is Tom Jones. I was very curious about who you were
and I would like to talk to you." It was my finest teaching moment.
We sat down for 15 minutes and had a conversation.
We operate on the assumption that the mentally retarded don't
understand dr appreciate anything. When a 2 or 3 year old child is
8
hugging and kissing you, you say, That's sweet. That's nice. That's
charming.' But then you go to the mentally retarded centers, and you
go to the schools, and you have 13 and 14 year olds who come up to you
and they hug and they kiss you; they kiss anybody who comes along--
and you say, "Oh yes, honey. That's nice. That's sweet." What are we
doing? We are rendering these people unsocializable. By responding
to inappropriate behavior, by reinforcing inappropriate behavior, we
are rendering these young people unsocializable for the rest of their
lives. We should be able to say to a 7 year old, "Look, I'm not going
to hug and kiss you. It's not appropriate. It's not done. If you
want to do it just to your mother or father, that's okay, but to a
stranger, no. The kid cries, "You don't love me anymore" and you
response has to be "maybe that's the way you feel." In your mind you
have to be able to say, "I'm going to try to communicate to this child
in another way-in a way that's appropriate for this child so the
child can become socializable." What a small price to pay for the
child initially saying, 'you don't love me anymore'.
We have to examine ourselves and how we condition, how we rein-
force inappropriate behavior. If we say, No, don't ever say that again;
don't ever do this again; it's not nice," are we appreciating the
impact we're having because if we forbid the behavior we make it more
interesting, more exciting? If we stimulate guilt, we encourage
people to reinforce the behavior. If a child or young person is mas-
turbating in public, we have to be able to say, "Look, we don't do this
9
in public. This is a private matter. Do it in your bathroom, do it
at home but masturbation is a private matter." Anything sexual is
private. You're not helping a child when you allow him to do inappro-
priate things in public places because you feel sorry for him.
Not too long ago, a group of parents came to me very upset,
because there were four kids among their sons who were exposing them-
selves. Obviously, they said, "They must be exposing themselves because
they're mentally retarded." I said, "Look I'm sorry to disappoint you
but on every college campus in the United States you have a dozen
young men who are exposing themselves. They're not exposing them-
selves because they're mentally retarded; they're exposing themselves
because somebody toldthem that it's wrong to masturbate and they have
all this energy and they have all this guilt and they have all this'
conflict. If they are comfortable about masturbation, they are not
going to expose themselves.
Everybody is interested in sex education these days. Basically,
I'm pretty conservative. I don't even believe in sex education in
schools. I don't know of a single public school in the United States
that's secure enough to conduct a decent sex education program. When-
ever I talk, people say to me, "Oh, this area - Catholics!" You're
supposed to be pulverized by that. What about Catholics? I happen to
think that Catholics represent one of the more progressive forces in
this country. I happen to think if there is good sex education in
any school, it's probably in a Catholic school. Some of the best
10
programs in sex education are in Rochester, New York, in Catholic
schools.
We need to show a little courage. We can agree and we can dis-
agree about some things but we cannot allow our disagreements to
stalemate, to inhibit our courage and our convictions. We need to be
able to communicate to young people what the facts are. We need to be
convinced that the less they know, the more irresponsible they are. We
work with normal young people in high schools; in one high school
there were 300 pregnancies our of 2,000 girls and none of them were
using birth control. They were all sexually active. Not 5%, 10%, but
almost all of them will eventually become pregnant while still in their
teens. What are we saying to them? You know I say, "No", the churches
say, 'No', the parents say, 'No' and what response do we get? No
response at all. Why shouldn't we say to young people, "At least if
you're going to be sexually active, even though we don't think you
should be, at least use birth control so you don't bring an unwanted
child into this world."
There are only a few things that the mentally retarded need to
know about sex. We don't have to have an enormously involved curricu-
lum. If you have any state institution or school or parent group that
develops a curriculum, they rarely ever implement their sex education
program. It's a subterfuge and all that happens is spending a year or
two studying it, working up a curriculum that everybody else has
worked up. The focus, of course, is on cleanliness. But, nevertheless,
11
even though that's the main theme, the secondary theme is 'what is a
man?' and 'what is a woman?' Nobody knows these days, but we're going
to teach the mentally retarded what's a man and what's a woman. The
third aspect involves some information about the plumbing of the human
body that the people who are teaching it do not understand and the
kids can't possibly understand.
I could give a lecture to any group of mentally retarded in 5 min-
utes. All that's needed is 5 minutes and I can teach them everything
they have to know. All you have to teach them is that every time they
have sexual intercourse (explain what sexual intercourse is) they risk
pregnancy. For heaven's sake don't explain the rhythm method; it's
the best way they can become parents.
With those normal kids in the high school I mentioned earlier,
there were 300 pregnancies and there's going to be 10% more next year.
They said they were using birth control. They said they borrowed one
of their mother's pills. They didn't think they could become preg-
nant if they had sex for the first time. Some of them used contracep-
tive foam but they couldn't read the instructions on the label and
they used it as a douche afterwards. And if you think about it, and
you read the label on the contraceptive foam, it involves a course in
mechanical aptitude. How can we expect the mentally retarded to know
about birth control if normal kids don't know? We have to teach them.
I'm going to present to you my manifesto- a manifesto for
12
sexual freedom for the mentally retarded. Mentally retarded are not
entitled to abuse anybody. They're not entitled to exploit anybody;
neither are we. We do not have the God-given right to bring into this
world children who are going to be rejected and unwanted, nor do the
mentally retarded. At the risk of demoralizing the 'conservative'
staff of any institution, let me suggest that we need to communicate
the following ideas: (1) Masturbation is a normal. expression of sex
no matter how frequently it is done and at what age. It becomes com-
pulsive, punitive, self-destructive behavior largely as the result of
guilt, suppression and punishment. (2) All direct sexual behavior
involving the genitals should be in privacy. Recognizing that insti-
tutions for the retarded are not built or developed to insure privacy,
the definition of what constitutes privacy in an institution must be
very liberal; the bathroom, one's own bed, the bushes, the basements
are private domains. (3) Any time a physically mature girl and boy
have sexual relations, they risk pregnancy. (4) Unless they are clear
about wanting to have a baby and the responsibility that goes with
childbearing, both male and the female should use birth control.
(5) Unless you are, say about 18 or so, society feels you should not
have intercourse; after this you decide for yourself--providing you
use birth control.
We have no right to say they cannot be sexual and sexually active
because they are mentally retarded. I can tell you 90% of the educable
mentally retarded are going to have sexual relations whether we like
13
it or not. Not only are they going to have sexual relations but they
are having sexual relations right now while you're here and not mind-
ing the store. There is someone who right now is having sexual rela-
tions inappropriately and without taking precautions because you have
not arranged for birth control. And if something happens, it's our
fault and that's the responsibility that we have to accept. (6) Adults
should not be premitted to use children sexually. We have to protect
the children against adult abuse. (7) The only way to discourage
homosexuality is to risk heterosexuality. (8) In the final analysis,
sexual behavior between consenting adults, regardless of mental age
and whether it's homosexuality or heterosexuality, should be nobody
else's business providing that there is little risk of bringing an
unwanted child into this world.
The follwing additional factors need to be considered: (A) We
need greater acceptance of abortion as a safe, legal, moral alterna-
tive to bringing an unwanted child into this worl. (B) Voluntary
sterilization can be a desirable protection to some retarded individ-
uals who can get along perfectly well in a marriage if there are no
children. What is needed is for people who work with exceptional
youth, to begin to show some honesty, some courage, some
integrity in facing squarely the issues of human sexuality. Right now
we should spread the word that the staff should not condition girls of
any age to believe that every woman wants and must have babies to
be considered normal.
14
Marriage - Parenthood - And Birth Control for the Mentally Retarded
Winifred Kempton
The subject of sexuality and the mentally retarded has become
quite an issue for professionals and parents during the past few years
because of the recent trend toward normalizing the retarded - giving
them a "ticket" to the community, as we say, and integrating the sexes
within the institutions. We hear a great deal about the normalization
principle these days. What is it? Simply this: The effort to treat
the retarded as much like any other individuals as possible - something
we have not done in the past. This necessarily includes giving them
the opportunity for marriage and parenthood.
To best demonstate what the normalization principle means to the
subject of marriage I would like to offer some views of certain leaders
in the field of sexuality.
1. "We want the right to move together with the other sex when we
feel ready for it, and we also want to marry when we ourselves
find the time is right. 1
2. "Even in institutions, we want to be able to go steady and live
together with the other sex without having the personnel inter-
fering with our private lives. 1
3. "There should be student councils which can take part in decisions
about the curriculum, the choice of books and leisure time activ-
2
ities in school
In looking at attitudes such as these, Wolfensberger noted,
These demands flow, not from professionals, but from retarded
15
students. They serve notice on us that the mentally retarded are not
only human but also sexual, and thus have a right to normal inter-
actions between human beings. What answer can we give to these
demands? Do we say, "We can comfort you, but we have to protect you,
to keep you from being hurt?" Or, do we say, "You are a human being
and you have the right to live as other humans live, even to the point
where we will not take all dangers of human life from you?"3
Adding to our understanding is Perske's statement, "The central
issue here is rights VS. privileges. Do we as professionals continue
to parcel out privileges of human sexuality to our retarded clients or
do we, the so-called normals, with our own guilt feelings and fantasies
about desires for sexual expression, adopt the attitudes of allowing the
mentally retarded to experience normal risk?
To deny any retarded person his equal share of risk experience is
to further cripple him for normal living. There is human dignity in
risk, and to marry and bear children is part of this risk.
However, just as suceessful marriages or parenthood of the general
population cannot be accurately predicted, in spite of careful evalua-
tion beforehand, it is not scientifically possible to accurately pre-
dict successful raising of children or successful marriages for the
retarded. There has been no correlation definitely established between
intelligence and successful marriages; we do know success is based on
emotional stability and ability to function effectively. This view-
point can give us some understanding as to the marriage and parental
16
capacities of the severely retarded; certainly, those who lack emo-
tional stability and do not possess the ability to function effectively,
would obviously be poor candidates for successful marriages if they
lived in the community and certainly they are not equipped to raise
children. In addition, in the cases where it is possible to prove
genetically that the retardation would be passed on to the children of
the marriage, should not parenthood be discouraged and help given to
prevent it?
Let us continue to be practical. Suppose a retarded couple in
your care comes to you and states that they want to get married or
their parents come to you for help in making the decision as to whether
or not their son or daughter should marry. What resources do you have
to help them make a wise decision? How can you go about it?
To simplify your procedure, suppose you look at the situation from
four points of view; namely, the point of view of the retarded couple,
then that of their parents, then, as the counseling proceeds, that of
their unborn children and finally, the point of view of the community
(especially in the cases where no parents in supportive roles exist).
The present paper will focus on some, of the questions which should be asked
in regard to the retarded couple, their parents and unborn children.
Some of the advantages of marriage for the retarded are:
1. They will have someone who will help prevent loneliness, with
whom to relate and enjoy life on their own level.
2. Sometimes in becoming more involved with the spouse's family,
17
their lives may be broadened in activities and relationships.
3. They may have more freedom from supervision of family to pursue
activities on their own level.
4. They can enjoy complete expression of their sexual needs.
5. A better sense of accomplishment, security and self- confidence
may result from being loved and sharing the responsibilities in
the care of a home.
Some of the disadvantages to be faced or difficulties to be overcome
are:
1. Sharing someone's life means sharing their problems with which
they may be unable to cope.
2. Close interdependent relationships means constant testing of
emotional stability which they may lack.
3. Their weaknesses, whatever they may, physical or mental,
may be too serious for someone else to cope with in a peer
relationship. In this case they might be better off with
supervised relationships.
Therefore, some questions which should be answered realistically,
which will better assure the predictability of successful marriage
of this couple are:
1. Is the love-relationship based on respect and affection rather
than needs of neurotic, emotional nature?
2. Are they able to cope with their own problems?
3. Are they capable to carrying on lasting relationships?
18
4. Does each one function at a fairly realistic level?
5. Is one member able to take responsibility for home finances
and fertility planning?
6. Can they make realistic decisions about average daily problems?
7. Are they able to control or understand their emotions reasonably
well?
8. Are there any special health problems which will drastically
handicap their relationships?
9. Are the individuals in the background willing and able to give
the right kind of support when and if needed?
These so called requirements for a successful marriage I should add,
refer to those retarded who are living in the community. IF they are
permanently or long-term institutionalized, for some reason, the
requirements need not be as stringent as they would receive the bene-
fits of much support. It is hoped that the institutions of the future
will all include living quarters for married couples; I feel that
this is an important-requirement for a truly good institution. These
considerations could be applied to most anyone. It is true that
successful marriages for the handicapped really can't be predicted
much more than those of the more intelligent population. It is import-
ant to remember that there has been no direct correlation between
intelligence and successful marriage; the prediction lies in social adjustment
of the individual; therefore, the prediction should be
based on this. However, those who have had varied experience with
19
married retarded individuals report that where the intelligence is
definitely interfering with functioning, the incidence of failure is
high.
The Parents
At this point we should be concerned with parents' views. Both
sets of parents may look on the marriage as having advantages for
their child, primarily that it will make him or her happier. It can
also mean that it will relieve their burden, as their child will have
someone with like interests with whom to socialize, leaving both
couples more free to pursue activities at their own level.
The counselor should identify any unrealistic reasons for parental
approval of the marriage. Do the parents unconsciously want the mar-
riage to make up for other pleasure of which their child's handicap
has deprived him? Do they want to "give" their child a companion to
make things easier for them? Are they trying to make their child
appear mormal to society? Additional consideration should be
given these questions: Is the parental decision based on the child's
needs or their own? Can the parents solve problems at a realistic
level? Are the parents willing to assume responsibility, financial or
otherwise at certain times, if necessary, for both husband and wife?
On the other side of the coin, the parents may be highly opposed
to marriage for their retarded youth and it would be necessary for the
counselor to objectively help evaluate motives such as parental inabil-
1ty to accept their child's sexuality, or parental inability to
20
relinquish predominance in their child's life, freeing the children
to make decisions they may be capable of handling.
The Unborn Children
Some studies have been made on the failures or successes of the
retarded who are parents. Mickelson, in a 1947 study, reported that
of 90 families in which one or both of the parents had been diagnosed
as mentally defective, 42% had given satisfactory care, 32% question-
able care, and 26% inadequate care. Above an I.Q. of 50, the mental
status did not seem to be the sole determinant of satisfactory child
care but rather, she reported key factors to be emotional stability
and ability to function effectively. 5 This parallels the consensus of
individuals in the field with whom I have worked.
There is an appalling lack of qualitative research of social
behavior and child rearing practices of the mentally retarded. However,
I have found from day by day contact with those who work with the
retarded and their parents, that the general opinion indicates a strong
preference for limited conception. Quite frequently, they consider
childbearing for retarded women as deleterious. Cases exist where a
marriage relationship may be fairly strong, until the added emotional
and financial strain of raising a child destroys it. Characteristics
which many retarded people lack are usually regarded as requisites for
adequate parenthood. These include:
1. The ability to plan for the future - a day, a year, 10 years
in advance.
21
2. Sound judgment and emotional maturity.
3. The ability to provide an atmosphere of intellectual stimulation.
4. The ability to care for a. child's health and give it proper
nutrition.
5. The ability to be willing and able to daily, consistently take
responsibility for another person.
Certain questions should be answered and dealt with accordingly.
Are there reasons why the couple want a baby which are based on
unreality or deep emotional needs or misinformation? Do they want a
baby to "play with" or to prove that they are "grown-up"? Do they
understand the full responsibility of parenthood? Can they take
financial responsibility for care of another? Can they handle simple
frustrations? Is there a reason to believe that genetically the
retardation may be passed on to their child?
Birth Control
This leads us to the last part of our topic - birth control for
the retarded.
Until recently, there were three main alternatives used to protect
a retarded girl from unwanted pregnancies. These included steriliza-
tion by tubal ligation, sterilization by hysterectomy, or placing the
girl in a highly protective institutional setting, or, if, at home,
permitting her no freedom in the community.
I, myself, as a social worker, placed retarded girls in institu-
tions where no males could get near her, simple because she was an
22
attractive and a high risk pregnancy client. I deeply regret these
acts now, but at the time, we had few afterthoughts or alternatives.
Our newly recognized normalization principle prompts us to see that
this is an infringement on the rights of the retarded individuals.
Sterilization was a main consideration because the only methods
of birth control then available (the condom, diaphragm, foams, and
jellies, rhythm and withdrawal) are all methods of birth control which
require some judgment, control and intelligence for effective use.
Now, however, there are three birth control methods which can side-
step some of those disadvantages, namely, the Birth Control Pill, the
Intrauterine Device (I.U.D. or Coil) and the Depo-Provera Injections
(used widely in under-developed countries but available only in
limited areas in the U.S.). All of these methods are now being
effectively used by some retarded women.
In addition, although some people are opposed to it, abortion has
been legalized in many places, including New York State, and it is
now possible to regard it as a back-up procedure for unwanted
pregnancies.
Sterilization, an irreversible process, has now been replaced by
several courses of action that provide for a change of situation and/
or condition. I do not mean to infer, however, that sterilization is
still not an important method of birth control for the retarded. As I
will point out later, there are many problems which the retarded girl
encounters with the Pill, IUD, and Injectable and we are a long way
23
from a perfect method to prevent conception. The only sure way is
through a sterilization process; however, our recent trend is to go
about it in a different way. In the past, the usual practice was to
proceed with the operation without making any attempt to explain the
consequences to the girl or help her understand what was being done
to her. The same was done with the boys who received vasectomies.
We are now attempting to help parents and guardians of a so called
"high risk pregnancy" retardate make an evaluation of the total situ-
ation, probably with a counselor, and then, after all factors are
taken into consideration, the decision of a birth control method or
sterilization is made. If the girl or boy is not able to understand
any part of the procedure, naturally the parent or guardian can have a
clear conscience in making the decision on his or her own.
Of all methods, the Depo-Provera Injection has been found by the
social workers and nurses with whom I am working to be the most
successful for the retarded. It works in much the same way as the
pill but requires only one injection every three months and gives com-
plete protection from pregnancy. The problem here is that the Food
and Drug Administration has made it difficult to use in clinics as a
birth control method because they say it has not been widely tested as
such. It has been used safely and effectively for purposes other than
birth control by private physicians in their own practice, especially
to regulate the menstrual cycle. It also is being used as a birth
control method in many other countries.
24
Our Philadelphia Council on The Mentally Retarded and Sexuality
is presently attempting to change the viewpoint of the Food and Drug
Adminstration so that they will relax the requirements they are insist-
ing upon for the use of Depo-Provera Injection in our Clinics. We are
basing our opinions on the successful use on thousands of women in
other countries and the reports of the physicians who are using it in
their own practices. We are very appreciative of support of this view.
It is important that we take a fairly complete overview of three
major methods (the IUD, the Pill, the Depo-Provera Injection) and the
factors which determine their successful use by the retarded girl or woman.
I would suggest that you become familiar with the following out-
line if you are involved in this area.
Some important questions and answers about birth control for the
mentally retarded -
Question 1) What are three methods of contraception most effective
for the retarded woman?
Answer: IUD, Pill and Injectables
Question 2) What are the advantages of the pill from the standpoint
of the retarded?
Answer: - No manipulation of sex organs is necessary.
- No discomfort of pain is involved.
-
It is taken independently of the male.
- It is reliable if taken correctly.
-
It is separate from the sex act.
25
Question. 3) What are the disadvantages of the pill from the viewpoint
of the retarded female?
Answer: - She may never want children - but would never take the
pill all her reproductive years.
-
She must understand how to take the pill.
--
She will become pregnant if directions are not followed.
-
She can have side effects of weight change, headaches.
-
It cannot be taken by women with certain health problems.
-
Retardates often take other medication regularly - these
may interfere with each other.
Question 4) What are the advantages of the IUD for the retarded?
Answer: in on
It is not dependent on routine-following of directions.
-
It is not dependent on intellagence or motivation.
-
It is independent of the male.
-
It is separate from the sex act.
-
It needs attention only occasionally.
Question 5) What are the disadvantages of the IUD from the viewpoint
of the retarded female?
Answer: -
She must check it, or have it checked regularly to be
certain it has not been expelled.
- The insertion can be a traumatic experience for the girl
who is fearful of internal examinations or genital
manipulation.
-
The insertion may be painful and there may be bleeding
afterwards.
-
It has some risks.
26
Question 6) What are the advantages of the Depo-Provera injections
or other injections?
Answer:
-
It is entirely reliable.
-
It needs no checking or care other than four visits a
year to the physician.
-
It is not dependent on male cooperation.
-
It does not cause discomfort.
-
There is no manipulation of sex organs.
-
It is not dependent on intelligence or motivation.
-
It is separate from the sex act.
Question 7) What are the disadvantages of the injectables from the
viewpoint of the retarded female?
Answer:
-
She may not have her menstrual periods or she may have
constant spotting.
-
A doctor must be seen every three months.
-
She can remain sterile a year or more after the last
injection.
- She may difficulty in obtaining it as it is not
released for general use as a birth control method.
(It had been used for other purposes for years.)
27
Question 8) How should. a retarded female be prepared before attending
a clinic or seeing a physician for birth control?
Answer:
-
She should understand basic facts of sexual intercourse
and pregnancies (if possible).
-
She should be told what will happen during clinic visit
(whom she will see, what will be the procedure, etc.).
-
Some explanation of the method most likely for her to use
may be given her (if possible).
-
Help her understand the purpose and process of the inter-
nal examination (if possible).
Question 9) When should sterilization be considered?
Answer:
-
When it is certain that the retardate is not able to use
birth control methods successfully.
-
Where there is a high risk if sexual activity or marriage
established coupled with certainity that the potential
parents could not care for the children without causing
serious, certain suffering.
- If it has been established genetically that the retardation
will be repeated.
-
If it is the preferred method.
28
Question 10) How can vasectomies, tubal ligation, or laparoscopies
be obtained?
Answer:
-
Private physicians may help or refer. If not, Planned
Parenthood clinics have services, counseling and referral
service. The National Association for Voluntary Steriliza-
tion will also provide assistance.
Question 11) What should be considered in a retardate's visit to a
family planning clinic?
Answer:
-
Overall realistic evaluation:
-
How much can she understand?
-
How much of an advocate must guardian, worker, or
parent be?
In conclusion, I want to caution you about taking all that I have
said as the last word on the subject of marriage, parenthood and birth
control for the mentally retarded. We have only scratched the surface
in what I have said, and we have done so in our work, on our education
process and in our counseling in this area. None of us can be experts
because we have no scientific research on which to base definite con-
clusions. We can at this point only do our best by experimenting,
exchanging information with one another freely and hope that many dedi-
cated persons will take up the challenge of becoming enlightened on
this very important part of the lives of our retarded.
1
29
1. Gordon, AND Sol and Green, Jeff SEXUALITY IN COURTSHIP, MARRIAGE,
PARENTHOOD AMONG THE RETARDED. Present at the 19th
Minneapolis, Minnesota, May 18, 1972.
Annual Association for Mental Deficiency Convention,
2. Malmo, Conference sponsored by Swedish Parents Association,
May 8-10. 1970.
3. Wolfensberger, In W. Vocational Preparation for Retarded Children.
Co., EDUCATION, 1967. AND REHABILITATION. Chicago: Aldine Publishing
Baumeister, A. A., MENTAL RETARDATION: APPRAISAL,
4. Perske, R. The Dignity of Risk and the Mentally Retarded. MENTAL
RETARDATION, 10, 24-27, 1972.
5. Mickelson, Their P. Can Mentally Deficient Parents Be Helped To Give
DEFICIENCY, 53, 516-534, 1949.
Children Better Care? AMERICAN JOURNAL OF MENTAL
30
Bridge Over Troubled Waters
Dr. Joseph Meyerowitz
People are often concerned with degree of retardation in focusing
on problems of sexuality. I find it more helpful to think in terms of
a continuum. Let us discuss three aspects of this continuum.
About the level of measured I.Q. of 70, most of the problems
relating to sexual behaviors are not serious in terms of maladaption.
These individuals adapt in an manner that doesn't create too much diffi-
culty. Individuals with I.Q.'s between 50 and 70 do have problem in
adapting, but they can adapt.
Moving below that level to about 35, one is dealing with an
entirely new set of problems. My primary focus will be on problems
encountered by individuals who would score in the 50-70 I.Q. range.
In the psychiatric classification, retardation is discussed in
terms of behavior. Behaviorally, retarded individuals act in a manner
which is developmentally below their chronological age. This is the
retardation. Thus, I am talking about sex and retardation with regard
to deficits in behavior. Physiological problems due to metabolic
defects (endocrine defect, genetic defect) are not on the same con-
tinuum. I am not specifically focusing on the same set of behaviors.
I recognize that. Rather, I°m talking about retardation which is pri-
marily tyable to some environmental base, whether it be environmental
In the embryotic development, environmental in the uterus of the mother
at the time of conception (due possibly to some drug she was taking),
31
and environment mentally involved in postnatal development. However
some of the material presented should be helpful in viewing the problems
encountered by all retarded individuals.
If you go to a physician and you say, "Doctor, I hurt over here,
right here it hurts" and he says to you, "Let me tell you something
about the nature of pain," you may justifiably be upset, but I think
it's rather important to know something about the nature of pain. In
the same way it is helpful to know something about the nature of
retardation.
What Is Retardation?
The AAMD Manual provides you with two criteria for use in rating
individuals- first of all, this measured I.Q. of which I spoke and
secondly, adaptive behavior. They are both supposed to be used, not
just one. Adaptive behavior consists of an ability to function and
maintain oneself independently and to meet culturally imposed demands
and responsibility--thats a very vague set of requirements because
we can manipulate the independence one must achieve. We can manipulate
the demands and responsibilities of society; these are variant. Indeed
in recent research, studies on the multidimensional nature of adaptive
behavior strongly suggest that these diagnostic procedures are inade-
quate (1).
A lady once said she came from a rural area and the parents didn't
believe their children were retarded. I related to her that I had
worked in a rural area and I had the same problem until I found out
32
the children weren't retarded- that at home they did just fine.
Over the summer they had a great time! Their parents had no com-
plaints until the school came and told them that they were supposed to
be complaining about something. The definition of retardation, the
one that you face when you hit the school system is "our methods of
processing, the things that we are doing, don't work for this child.
He isn't continuing to develop." There isn't really an incongruity
here. The label of mental retardation is a statement that the con-
tinued development and socialization of the individual are not or will
not continue by the larger society's processing. The way we are doing
things isn't working for this kid. What does that mean? He's
retarded. That's how retardation links to environment. That's how it
links to minority groups. To say, "No, I don't like that. Being a
member of a minority group, I shouldn't have more retardation in my
group, doesn't change anything.
Sexuality Is More Than Sex Acts.
In speaking of human sexuality we are focusing on one, if not the,
central basis of relating to ourselves and to others. This is where I
found primary problems in listening to the Conference.
I have the feeling that this was to be a conference on housing.
It happens to be an important housing--bodily housing. But yet
everyone's been talking about plumbing and its use and misuse. I want
t.o talk about housing--that is the whole person.
33
Human sexuality has to do with personhood. It has to do with who
you are and what it means to be a person and relate to other people,
how you feel about being a person. Part of relating to other people
involves employing a lot of your 'plumbing.' But this is not all that
is involved.
Moving out to others is the story of the development of inter-
personal relationships. It's also what I think is sexuality. And if
you try to handle it, you have classes in sexuality, you have classes
in relating to yourself and others. You've got to get involved with
physical aspects--all kinds of physical aspects--whether it's all
right to put your arms around somebody, whether you can just touch
their hands, or you wave. You can get involved with whether it's all
right to masturbate, whether it's all right to have intercourse,
whether homosexuality is good or bad. That will happen--yes. But
that's not human sexuality. That's a manifestation, an aspect; it's
important. From a legalistic point of view it's critical, but it's not
human sexuality. It's just a part. If you're going to have curricu-
lum units in human sexuality, go back and start with appreciation of
sex and them develop the curriculum as you would expect a human being
to develop, because that's what we're talking about-- the development
of human beings.
Society expects a lot more adaptation from women. There are a lot
more criteria that have to be met. And I'll give you a very concrete
example with regard to the retarded individuals in which you will see
that it is so.
34
My central premise is that all persons deviate in some way at
some time from developmental, social expectations (this seems fairly
safe) and they certainly deviate from developmental, statistical
norms. A parent may have a child who is retarded; he's not retarded
intellectually, he's fine intellectually. He's just clumsy. It's
still going to be a problem. He's in high school and it's very hard
to be clumsy in high school. He is not meeting either statistical
norms or developmental, social norms. And I think that if you will
think of yourself, you will find that it is a universal truth that
nobody goes right along the line. However, to look at oneself and
say, 11 I deviate, I don't fit in, I'm different" is introspectively
destructive. To be socially labeled as systematically deviating, that
is to face, as do the persons with whom we are concerned, anticipation
of deficiency, this is indeed to be "in troubled waters".
I would like to suggest to you that aspects of sexuality offer
evidence of personal bodily integrity. Potentially, human sexuality
can be the bridge to a dignified, positively sanctioned social role.
Self Image.
All of us, as well as all of those whom we think were trying to
help, are seeking self-esteem. We would like to look at ourselves and
say, "not bad". Body image is a central referent we use in assessing
self. That's what we look at. We look at our body, and we don't see
it as other people do. We see it in some reflected fashion. We see
35
it in terms of what other people have said about it. We see it in
terms of experiences it has provided us. We are being asked here to
deal with the problem common in social adjustment of late maturing
children. Their body image is failing them because they are not
maturing on schedule. These children, those who are manifesting men-
tal, intellectual retardation are late maturing children. The reassur-
ance and support of reference people goes a long way toward reducing
anxiety of all adolescents including retarded adolescents. So that's
lesson one. 'Convey to the child the idea, "You may be different from
other children now but by the time you're 17, you are going to look like
these others and the same things that are happening to them will hap-
pen to you.
Let's talk about the effects of body image. Our focal population
masks their anxiety. They don't come to you and say, "my body image is
negative," That just isn't going to happen. But I can give you some
evidence that it is and that it can be changed. Males with
Klinefelter's Syndrome have an effeminite body configuration. They
can look at themselves and they see that among other things, they
have breasts; they are also aspermatic. They can look and see that
their hips are wide, their waist is narrow and there is an awful lot
of fatty tissue deposit giving them breasts. Their sexual orientation
is ambiguous and their sex drive is low. They are described by those
who work with them as being verbally aggressive, spiteful, and engag-
ing in surreptitious tearing of ward property.
36
When two hundred milligrams of Testosterone Enanthate are admin-
istered to an individual with this problem, there are minimal changes
in the body contour which cause it to appear a little more masculine
and secondary sexual advances are speeded up slightly. There is a
little less breast tissue. You can see the difference; there is a
difference. These individuals, however, when you ask them to manifest
body image by drawing a picture of themselves, will for the first
time, produce a folio picture of a male. Previously they never drew
males when asked to draw a picture of themselves. That's remarkable.
There is a direct and immediate evidence of change in body image.
That's not all. They act differently. They became more assertive,
more alert, more outgoing, less passive, their goal-directed behavior
and sexual drive increased. These are individuals, for whom the desire
to mate and for whom reproductive capacity was minimal. After medical tr
ment the sex drive, where it is not infantile, becomes well-oriented;
it is masculine and directed toward women. To the outside observer,
physical changes. are not obvious; yet if you continue testing, these
results continue to be true. After having withdrawn the drug, these
good results in attitude continue but the body changes regress. The
point is that these individuals are pleased. These individuals are
aware of their body image (2,3). They have never talked about it.
They never said, "Gee, it seems to me I'm more like a girl than a boy."
But they have been aware of it. Until this kind of an undertaking was
attempted, we had no evidence of the extent to which they have been
37
anxious about their body previously. Sometimes the objectivity of our
instruments and of our perspective causes us to forget that the point
of view of those we're trying to help may be quite different from our
own.
To return to my basic premise again, individuals need to have
certain kinds of experiences in a proper sequence for optimal develop-
ment. Out of this gradually develops an internalized mental represent-
ation of self, the world in which one lives, and the individual's
relationship to that world. These internal mental representations
significantly shape and limit the total repertoire of behavior pat-
terns. In helping an individual to achieve and perceive his or her
physical development as appropriate, we have the potential for enhancing
the totality of his or her self-esteem and changing behaviors to those
that we consider positive.
Attitudes Toward The Retarded.
Let's talk about social tolerance. Children asked to evaluate
age peers who are in the educable mentally retarded range consistently
rate the same person higher in the play context than they do in the
school context. What they are saying is this isn't the same person
because the expectations are being met differently. Consistently
girls score better than boys, independently of whether the person
doing the rating is male or female (4,5). Now let's look further and
make a comparison for the population who would be considered less able
38
than educable mentally retarded. For them, fulfillment of social
expectations is more difficult. If you look at the population of
males in institutions, you'll find that males in institutions come in
with a higher I.Q. and more physical attractiveness than females.
Thus, society does seem to be more intolerant of males. However, if you
look at the population of individuals in institutions and you ask
"Now that they are in institutions how are they rated?", you'll find
that consistently females are rated as being worse in functional
ability and physical development than males. And this does not seem
to be relevant to the empirical, verifiable differences between them.
Rather, it would appear that having tolerated female deviation longer,
suddenly society takes retribution. It says, "OK, I tolerate you this
long; now I'm not only going to look at you objectively but I'm going
to snap back at you and repay you by downgrading you". Females in
institutions are consistently rated by the attending personnel as
being more troublesome, less attractive just all the negative
behaviors.
Retarded adolescents are faced with a dichotomy of demands which
they cannot fulfill simultaneously. Boys are trying to do what they
perceive society is demanding of them trying to be boys, trying to
act "masculine". Society says, "You know you have a big potential for
being aggressive; we really worry about it." Girls are trying to act
"feminine" and certainly seem to irritate the system. As long as they
confronting the society with the fact that they weren't boys,
39
they were well-tolerated. But society says, "You know that seductive
behavior is potentially dangerous." Confronted with ambiguity between
expectations for themselves and others in society, they tend to regress
and fixate.
Compared to age peers, the individuals with whom we are concerned
exhibit more onychophagic behavior--that is they bite their nails.
Psychoanalytically, this behavior is taken as indicating oral aggres-
sion and poor body boundaries. If your retarded child bites his or
her nails, he or'she will tend to be more argumentative, to swear, and
to, what the English call, "give cheek". They tend to masturbate more
and they seek more oral gratification which means they usually like
candy. Despite the folk mythology, nail biting is no more prevalent
among the retarded than among a normative population.
Retarded individuals are developing through the same sequence as
normals, but at a different rate. The problem they face in developing
are the same problems that others at their point in development are
facing. This behavior, nail biting, is one thing that should not cause
you any great concern and generally disappears spontaneously. But it
happens to provide a method of assessing development (6). If nail
biting occurs, one should recognize that, at this point, the individ-
ual is facing some kind of problem and it ought to be dealt with. The
nail biting is the same as the nail biting for children generally.
It's a manifestation of an inappropriate coping with problems that are
overwhelming to that individual. If you deal with it, well, the nail
40
biting will probably stop. If you don't deal with it, the individual
will do something; the nail biting may stop anyway. It's a choice as
to whether you want to be sensitive to the cues that are being given
to you, that you can use to the child's advantage.
Sometimes in our desire to protect the individual, we end up
limiting his potential for social accomplishment and self-esteem.
Indeed there is no reason for this. Most of the problems of being a
parent can be resolved without intervention if you can stop back and
restate and review the problem. Where problems don't get resolved and
persist, professionals really can be helpful despite the mythology
that professionals are useless. Brief multiple visits can be devoted
to active examination of the here and now problem. In order to
succeed, you must accept the fact you really do have a particular prob-
lem and believe there really is something that can be done about it.
Generally, appropriate behavior of the child can be developed through
confrontation, suggestion, and example (7).
Sexual Expression.
Now let's look a little bit more closely at the "plumbing". Con-
sider here the manifestations of sexuality in what is more or less the
young adult. For some of the young adults with whom we are concerned,
their own bodies will have already provided the maximum gratification
of which they are capable. That's as far as they're going to get.
Okay. I don't think that that justifies some of the things I've heard
41
said. A baby lying in a crib can't reach much more than itself. Let's
set aside the analytic concept that he doesn't know there is anything
besides himself. The child learns that touching oneself, zonial sen-
sitivity, is differential, that not only is it nice to be here but
that you can make yourself feel nice. Some individuals are going to
fixate at that point. That's better than not being able to feel that
way. It's better to know that you can make yourself happy than to not
know that you can be happy. That doesn't impress me as saying that
masturbation is great or that children should be encouraged in this
behavior; compulsive masturbation is not great. Sanctioned behavior
is meaningful only if it's selective, that is, if it represents a
choice, assuming that there are other alternatives. Even if selec-
tive, I'm still not sure it's great. I would like to know a lot more
about the individual child in order to be sure that we are not dodging
an issue. Some may say masturbation for this child is adaptive;
others may say it's maladaptive. For example, the child who mastur-
bates at night doesn't get into trouble. I would like to know whether
that child is masturbating at night in bed because that's the only time
he can be alone or is it because he's so anxious it's the only way he
can get to sleep? I don't think either are very good reasons. Both
statements represent some kind of neurotic behavior. If it's fulfill-
ing, okay, that's one thing. If it is complusive behavior, I'm not so
sure it's great. And I'm positive it's not great if it replaces or
blocks the potential for further growth.
42
Some of our retarded population will form homosexual attachments.
The greatest proportion are capable of, and, if given the opportunity,
would choose to relate to the opposite sex. For the most part, I am
talking about people whose fertility potential is the same as the gen-
eral population and whose birth rate, in the community, is the same or
lower than that of socio-economic peers. Retardates living in the
community do not bear more children than others of their socio-economic
level. I don't think that that is said often enough. Most people will
agree that regardless of the social situation of the sexually active
partners, they should not bear children whom they do not want or for
whom they cannot competently care. This "acceptable statement"
includes three significant ideas: First, sex as a partnership;
second, sexual activity not resulting in children potentially; and
third, some conception of competency on the part of the individuals.
The movement from deriving pleasure only from one's own body to achiev-
ing greater gratification through an interpersonal relationship is a
significant measure of social maturity. Social maturation is evidenced
as you move from focusing only upon yourself to relating to other
people of the same sex. All other issues aside, a heterosexual rela-
tionship requires greater maturation than a homosexual relationship.
Criteria for Contraceptive Usage.
I would contend that contraceptives should be available to those
43
who comprehend their nature and consequences without regard to their
competency to care for children (8). On an experimental basis, we can
now prevent conception through an implanted dispenser for 400 days;
that means a year, plus a month and a half margin for error. In cases
of contraceptive failure, abortion is a viable, if not desirable,
alternative (9). Without asking whether it is desirable, it is viable.
We can show you empirically that the negative results of bearing an
unwanted child are greater than those of abortion.
A few words about contraception in institutional wards. Co-ed
wards are becoming more common for emotionally disturbed individuals.
These people are not intellectually impaired, they are emotionally
impaired. The formula for rating level of function had two parts,
measured I.Q. and adaptive behavior. These people aren't adapting
well, but their I.Q. is all right. When a person comes into a hospital or
institution, he is entitled to protection. Women and girls are expected
to continue being females while they are hospitalized, and especially
on a co-ed ward. And it is not to be in their best interest from the
point of view of their emotional health for them to become pregnant
while they are also fighting to regain emotional stability. Therefore,
it may be agreed, they are all entitled to contraception.
Sterilization is an easy straw man to knock down. Under what
conditions might it be advisable? Ask yourself if this individual has
a high probability of procreative behavior. You don't have a problem
if they don't. Have they demonstrated incompetence in the skills
44
necessary for family life and child care? Is this demonstrated lack
of skills not remedial? Is there anything else you can do about it?
Will this problem persist throughout their reproductive life? If they
meet all those criteria, then probably sterilization isn't the right
answer. If they don't meet them, then sterilization isn't the right
answer. If you want to answer the questions, you want to understand
these individuals in planning with them.
In a major institution, where sterilization was discontinued,
illegitmacy has not gone up. Individuals who had resided in that
institution (and were sterilized) do understand the implications
despite what's been said and many years later can give a vivid account-
ing of the procedure that was done to them. That emotional reaction
is something to contend with also in dealing with sexuality problems
of retardates (10).
Segregation.
We are civil despite the appearance around us in the newspapers.
Man is, I believe, becoming more civilized, more human. We are moving
in some positive direction. Part of becoming civilized is a widened
application of the concept of self-determination! In this sense,
segregation could be a violation of the integrity and dignity of the
individual. But one argues, some individuals need to be segregated to
protect these individuals from society. If this is true, then they
should be able to demand of the modified setting in which they are
45
placed, the right to learn the behaviors which are adaptive in relat-
ing to society. Institutions should work to eliminate themselves.
Individuals in institutions should expect to be supplied factual
information on sexual and social behavior. They should be instructed
in relevant contraception, but most important they should be given an
opportunity to improve their ability to assess social situations so
that they can make decisions for themselves. If you're going to take
away someone's self-determination because he or she needs to be protected
from society, then help that individual regain self-determination by
learning to assess social situations.
It has been found that troubled adolescents may resolve some
problems in a break from the family setting. Group setting for the
individual away from the home, may be a solution. It is working in
some places (11).
I hold with Fotheringham, of the Ontario Institute for Studies in
Education, that any compulsory, mechanistic approaches are appealing
because they divert attention from the prevailing social arrangements
and their dysfunction in family living (8). This researcher takes a
strong position on the extent to which the family is part of the
problem.
The family is often part of the individual's problem, as it is
with every child who is having developmental difficulties. In order
to provide this environment, we must free ourselves of the stereotype
of the nuclear family. I think we owe it to ourselves as well as to
46
the entire generation with whom we are concerned with socializing to
conceive of alternative arrangements for living. Look at the Haight
Ashbury community and the communes which arose in the last few years
that now are undergoing change. One of the most striking things about
them is that individuals who don't fit in society fit there. There's
something about this subsociety which allows it to say, "Listen, first
of all, you're a person and you're good for something. I'm not sure
what it is you're good for. When you do that and you're valid, you
get the checkmark. First, I'll confer upon your personhood, then I'll
ask you what you're good for." It works.
We have a tradition about what parents are supposed to do, what
mothers are supposed to do, what fathers are supposed to do. I'm not
convinced that these are right. But there are such things; we know
what these roles are. The question is "what does it take to do it?"
And that's something we don't have an answer for. Traditionally,
mothers are supposed to take care of the physical and emotional needs
of children and manage the household. Fathers are supposed to provide
care and support the unit. It is not at all clear what levels of
intelligence are needed to manage these requirements. However, I am
impressed with an eight year study led by Dr. Jane Mercer of Riverside,
California, which found that adults with I.Q.'s less than 79, living in
the community, lived lives little different from other adults. Eighty-
three per cent held jobs and eighty per cent were economically stable.
47
This study, as have previous ones, suggests that adaptational problems
become evident only with those whose I.Q.'s are below seventy, and that
much of the evaluation of deficits in adaptive behavior reflect racial
bias.
Regardless of what I've said about populations and sub-populations,
the central point is that we're talking about individuals. They
should be considered in terms of the fact that they are following a
path that is known; there is no mystery. The problems they are facing
are problems that are known and if the solutions are inadequate, we at
least know the directions. We know what is available.
Let me end with a little poesy, a little saccharine to make the
medicine go down. That song "Bridge Over Troubled Waters" begins
"When you're weary, feeling small,
When tears are in your eyes, I will dry them all
I'm on your side, when times get rough. Q 08
Very pretty--rather fostering of dependency- but pretty. It does end,
however, and I will end also. I am going to conclude with the entire
last chorus because it is the point that I would like to leave you with.
It ends:
"Sail on silvergirl,
Sail on by.
Your time has come to shine
All your dreams are on their way,
See how they shine.
If you need a friend
I'm sailing right behind
Like a bridge over troubled waters
I will ease your mind.
48
References
1. Ross, R. T. Factor groupings of problem behaviors. American
Journal of Mental Deficiency, 76, 136-136, 1971.
2. Hunter, H. A controlled study of the psychopathology and physical
measurements of Klinefelter's Syndrome. British Journal of
Psychiatry, 115, 443-448, 1969.
3. Johnson, H. R., et al. Effects of testosterone on body image and
behavior in Klinefelter's Syndrome: a pilot study.
Developmental Medical Child Neurology, 12, 454-460, 1970.
4. Meyerowitz, J. H. Peer groups and special classes. Mental
Retardation, 5, 23-26, 1967.
5. Gottlieb, J. Attitudes of Norwegian children toward the retarded
in relation to sex and situational context. American Journal
of Mental Deficiency, 75, 635-639, 1970.
6. Clark, D. F. Nail-biting in subnormals. British Journal of
Medical Psychology, 43, 69-81, 1970.
7. Simmons, J. Q. Emotional problems in mental retardation.
Utilization of psychiatric services. Pediat. Clini. North
America, 15, 957-967, 1968.
8. Fotheringham, J. B. The concept of social competence as applied
to marriage and child care in those classified as mentally
retarded. Canadian Medical Association Journal, 813-816, 8,
1971.
9. Sclare, A. B. and Geraughty, B. P. Therapeutic abortion: a
follow-up study, Scottish Medical Journal, 438-442, 1971.
10. Fujita, B., Wagner, N. N., and Pion, R. J. Sexuality, contraception
and the mentally retarded. Post Graduate Medicine, 47, 193-197,
1970.
1. Feuerstein, R. A dynamic approach to the causation, prevention,
and alleviation of retarded performance. Social-Cultural
Aspects of Mental Retardation, Proceedings of the Peabody-
NIMH Conference, edited by H. Carl Haywood, Appleton-Century-
Crofts, Educational Division, 1970.
49
Some Considerations in Planning a Sex Education Program
for the Trainable Mentally Handicapped
Willie H. Scarborough
and
Margaret C. Ortinau
This workshop is concerned with the interrelationships of the
home, school, church and community in planning a sex education program
for the trainable mentally retarded. Each of these institutions has
structure, ideas and mores unique to itself. These groups have much
to contribute to the topic being discussed today. The problem lies in
organizing and selecting the best of each into a workable program that
is generally acceptable.
It is evident that the scope of this topic is broad. Basic to
this workshop are two complex subjects, sexuality and the trainable
mentally retarded. Before we begin to explore the roles of home,
school, church, and community in cooperative planning, it may be of
value to orient ourselves to some considerations in the subjects of
sexuality and mental retardation. We may then be in a better position
to discuss workable models of a sex education program.
Sexuality is an inherent characteristic of mankind existing at
birth and extending throughout the life span. It is an intimate part
of one's self concept and broadens to encompass the sex role of the
individual on both a personal and a group basis.
If we think of sexuality as developing throughout the life span,
then we view it on a continuum. The following periods of development
may be considered:
50
1
SEXUALITY CONTINUUM
Developmental Emphasis
Chronological Age
Significant to Educational
(Approximations - Based
Programming
on Developmental Norms)
Psychic Awareness
Birth to 2 years
Self Awareness
2 years to 4 years
Group Awareness
4 years to 11 years
Sex Awareness
12 years to 16 years
Society Awareness
16 years
1
This chart is a theoretical model based on our conception of
sexuality development. It is based on the thoughts of many con-
tributors in the field of human development.
A program of sex education should be continuous and sequential if
we hope to achieve a maximum of understanding on the part of the
trainable mentally handicapped child, his family and community. The
divisions on this continuum represent stages of childhood development
that are particularly significant in planning a program of sexuality.
Too often, people tend to focus on sex education at the adoles-
cent age. This approach fails to encompass the total concept of
sexuality. We should not isolate a single element within the total
concept of sexuality. This is what we do when we begin sex education
programs at the adolescent stage.
Sexuality education begins at birth. It may not appear to be a
program of sex education, since the home is the center of learning at
51
this time. The infant from birth to two years is developing sexuality
concepts that are basic to his needs of love and security. The role of
mother and father--the subtle body langúage--all contribute to the
foundation upon which awareness of female and male concepts will grow.
Psychologists who offer theories of personality development stress
this early period as critical to the basic needs of mankind. On this
continuum, these basic needs are referred to as psychic awareness.
The second significant stage in sexuality development occurs be-
tween ages 2 and 4 years. At this time, the normal child grows rapidly
in language skills and he can apply words to his awareness of himself
as a person. In particular, he can associate body parts with their
names and he develops an understanding of himself in a boy or girl
frame of reference.
In the first two stages, the child is largely self-centered. At
about age 4, he moves toward the stage of group awareness. Interaction
with his peers are at first heterosexual in social situations. Identi-
fication with the same sex, in terms of friendship and group activities,
grows rapidly. The awareness of sexuality is sublty present in this
period. As the child approaches the preadolescent stage, boy-girl
awareness becomes more clearly defined in terms of sex connotations.
Adolescence is the panic button stage for the parent and the
child. This is the point at which many parents and educators suddenly
begin to ask about sex education programs. The physical changes that
take place rapidly send out warning signals to the parents, and
52
frequently trigger emotional stress in the child. The sex drive is
heightened during this period. The girl-boy awareness increases in
dimension and is subject to influence by peer group and community
attitudes, toward male-female roles as sex partners.
How the adolescent adjusts to the heightened physical awareness
of his sex identity as he moves toward adulthood is influenced by the
people in his life situation. His total adjustment to the various
sexual roles open to him, in terms of a single life, or a partner in
marriage, and parenthood, depends to a great extent upon his under-
standing of these roles. These understandings are tied to his per-
sonal identity, of which the total concept of sexuality is an
inseparable part. They have been largely subject, by chance or plan-
ning, to the foundation set by the home, church, school and community.
We have reviewed, briefly, a concept of sexuality. Since our
focus here today is on a program of sexuality education for trainable
mentally handicapped, it may well serve our needs to discuss briefly
our particular population. Too often papers are written or discussions
are held concerning programs for the mentally retarded as though there
were no individual differences within this group.
Persons described as trainable mentally handicapped are a low
incidence group in the total population of mentally handicapped. The
degree, or intensity of the handicap is more severe than that of the
group identified as educable mentally handicapped. The trainable men-
tally handicapped are often boardly identified as the group functioning
53
in an intellectual range of 1/3 to 1/2 normal.
When we talk about an educational program in sexuality for train-
able mentally handicapped, more important than an I.Q. assessment is
particular developmental characteristics of the group. At this point
a word of caution is needed. Whenever one deals with group character-
istics, the danger of applying generalizations to the individual is
evident. The following discussion is concerned with generalities
applicable to the trainable mentally handicapped group. The need to
evaluate carefully each individual in terms of his particular strengths
and weaknesses is always valid.
There is evidence of more frequent occasion of clinical types and
multiple handicaps in the trainable mentally handicapped population.
Clinical types, such as hydrocephaly and phenylketonuria are associated
with a greater intensity of mental deficiency. Multiple handicaps,
such as vision, auditory, and motor problems, may be marked or subtle.
Although physical maturation of the trainable mentally handicapped lags
behind norms, they are closer to average in this area than in the area
of mental development. In the area of emotional growth, the needs of
our population are similar to those of all mankind. These group
characteristics are very important when we consider them in terms of
sexuality education.
A critical consideration in the mental characteristics of the
trainable mentally handicapped is the limited development of language
processes. Perhaps the single most handicapping condition associated.
54
with mental retardation is the failure of higher language processes to
develop. The trainable mentally handicapped do not obtain the use of
abstract language. The cognitive processes associated with higher
levels of language are sometimes referred to as "formal mental opera-
tions." These operations involve the ability to retain and recall
knowledge without having an actual or concrete situation at hand.
These operations also involve the ability to comprehend specific know-
ledge and to apply this knowledge in a theoretical situation. Higher
language processes also include the ability to analyze, and to synthe-
size an analysis into a set of abstract relations. Perhaps the most
sophisticated of higher cognitive processes is to evaluate a situation
in terms of internal evidence and external criteria. Our special
population does not attain this level of language development. They
are arrested at an earlier stage of language-- a stage that might be
referred to as "concrete language operations."
The cognitive processes associated with concrete language are
fundamental language operations. These operations involve the ability
to classify knowledge, as, for example, an apple and a banana are
fruit, and fruit belongs in the larger class called food. Concrete
operations also involve the ability to order knowledge. Ordering
refers to the recognition and understanding of concepts of dimensions,
time, and space. The ability to correlate knowledge is another con-
crete operation. For example, the soup, the bowl, and the spoon are
related to the task of eating. In educational psychology, it has been
55
established that learning, in the concrete stage of language develop-
ment, is most effective when the child has the opportunity to become
physically as well as mentally involved. In methodology for trainable
mentally handicapped we use this principle in teaching. We don't just
talk about making a bed to a trainable person. We combine verbal
experience with actual motor performance of the task.
Let us examine a theoretical continuum of language development
and compare trainable mentally handicapped to "norms." In order to
place trainable mentally handicapped on this continuum, two hypotheti-
cal assumptions are posed. The first is that trainable mentally handi-
capped will not attain greater than 50% of normal intelligence. The
second is that in early developmental growth, trainable mentally handi-
capped may require twice the maturational period assigned to norms.
CONTINUUM OF LANGUAGE DEVELOPMENT
Age Range
Age Range
Stages of Language Development
Norms
TMH
Sensory Motor
Foundation for language operations
Birth to
Birth to
established by interaction of
2 years
4 years
infant's motor and perceptual systems
with the environment
Self-Awareness
Rapid development of social language-
Age 2 to
symbols (words) replace internal images
Age 4 to
4 years
8 years
Concrete
Motor system dominates language. Learn-
Age 4 to
Age 8 to
ing is primarily effected by child's con- 11 years
tact with real objects in actual situations
22 years
Abstract
Language dominates motor system. Higher
cognitive processes not dependent on
Age 11 years
TMH WILL
concrete or real situations
NOT ATTAIN
56
Specifically, what does this language limitation mean in terms of a
sexuality program for the trainable population? It means that any
instructional program that depends upon the use of higher language
processes will beyond the learning ability of the group. When the
trainable child reaches the age of sexual maturation, the age defined
in the continuum of sexuality as the sex level of adolescence, instruc-
tional programs must continue to regognize the language limitations
of the individual. Too often the physical and social development of
the trainable retardate tends to overshadow the need for continuous
attention to the language ability.
Those who are concerned with a sex education program for train-
ables must consider that:
1. Attitudes, values, and beliefs of the family, church,
school and community are founded in philosophical
tenets that depend heavily on higher language pro-
cesses for transmission.
2. Specific subjects such as menstruation, reproduction,
birth control, etc., inherent in a sex education
program, involve concepts that depend heavily on
higher language processes for transmission.
These considerations call for creative and mutual agreements on the
part of family, church, school, and community in designing a program
of sexuality education for our population. Above all, these consider-
ations call for acceptance of the seriousness of the handicap; respect
57
for the opinions of individuals in each of these institutional roles
and sincere dedication to the premise that the mentally retarded
individual is equal to all mankind in human dignity.
Let us take a look at some real situations that occur in the
development of our trainable mentally handicapped child - situations
that are definitely significant to sexuality growth and likely to be
kickers in a planned sex education program.
Take, for example, the infant from birth to age two. Sexuality
education is under the direct influence of mother and father. Mother
imparts a feeling of "female" through body contact. Father's flat
chest is a male contrast to the woman's role. Even the differences
in the. feel of the hands of mother may influence the child's psychic
impressions of female and male roles. The parent usually talks to
the child describing daily activities as they care for, or play with
the infant. In the case of retarded children, this use of language as
a stimulus for hearing and listening is a must. But how many mothers
talk about all of- the activities they employ with the child? There
is often a heavy silence when mother is busy at tasks such as diaper
changing or when bathing the genitals. Depending on the mother's
attitudes concerning descriptive words for these areas - her communi-
cation or lack of communication - effects the child's learning.
Language becomes particularly significant when the child enters
the self awareness period of development. At this state, the child's
concept of himself as a boy or a girl is not realistically established
58
if mother refers to him as a "big boy because he wears long pants."
He is a boy because he has a penis - ask any girl in long pants about
that! Here is where mother, father and other members of the family
need to come to terms about their feelings and attitudes, and the
sexual identity needs of the young child.
We cannot deny the fact that the family's feelings and attitudes
are often influenced by the church and community. Not only the home
but the school also is concerned with helping the child to gain a
realistic self concept. The teacher, often limited by school policy
concerning the use of "forbidden terminology" continues to help little
Annie to know she's a girl because she is in the girl's line for pass-
ing or take physical education with the girls in the room next door.
As the child enters the period of group awareness, a common situ-
ation that later causes confusion, is the community attitudes towards
outward display of affection. When the child holds hands and kisses
his peers at an early age, this is considered "cute". Even the church
encourages outward displays of affection in the name of "brotherhood."
But when the individual approaches adolescence, these same behaviors
raise eyebrows and concerns. Behaviors first encouraged in the family,
school and community, we may now try to undo in the name of sex
education.
At the beginning of the group awareness stage, the children are en-
gaged in dramatic play that involves imitation of family situations.
As they progress in this period, heterosexual activities, such as
59
parties and group games, increase the dimension of male-female roles.
Planning for these kinds of activities must take place or our retarded
children will be "on the outside looking in".
Last, but not least, are the social and emotional needs of the
retarded - needs common to mankind. The retarded individual needs
very much to be accepted by his family, his peers, his community.
He will attempt within the limits of his handicap, to respond to
demands or apparent requirements to be part of the group.
This need of the retarded places a strong emphasis on the respon-
sibility of the family, peer group and community to make concerted,
continuous efforts to understand the individual. As far as possible,
sex education programs for the retarded must include education of the
total family. The total family should include not only mother, father
and siblings but should extend to grandparents and other close
relations. Continuing these concepts of meeting the needs of the
trainable young adult, the sex education program must also include
as many of his neighbors as it is possible to reach.
In particular, the adult retardate sees others in an outward
role of courtship and marriage. He also sees the state of parenthood
and recognizes the joy of the company of children. He may wish to
imitate these states and even verbalize his desires. How do we
respond to his wishes?
The trainable mentally handicapped will need continued assistance
60
and guidance throughout his adult life. This guidance must also
include the sexuality aspect of his life situations. The family and
especially the church and the community must assume this responsibility.
We have attempted to focus attention on sexuality education for
trainables as a continuous program, beginning at birth. We have
reviewed the learning characteristics of our special population in
order to keep their needs uppermost in our planning. We have shared
a few situations that illustrate the complexity of the topic at hand.
We have not touched upon the complexities of specific topics that
are part of a program of sexuality education, such as reproduction,
venereal disease and contraception.
In the life span of any individual, four major influences govern
the scene - the family, the church, the school, and the community.
There is no single program that will meet the needs of the individual
and the objectives or values of each of these institutions. There is,
however, a real promise in the knowledge that mankind can reach solu-
tions to problems through communication. There is also real hope in the
fact that, inherent in our philosophy of a democratic society, we
have the right to personal opinions and the need to respect this right
in others.
The family, sometimes strongly influenced by religious convictions,
is the major directing force in the life of a trainable retardate.
How can the many families of the trainables agree to a sexuality
education program that may be taught in a public school system? At
61
what point might the church take a leadership role in education for
some of the trainable population? At what point might the community
offer a program for some members of this particular population? There
are various ways in which a program may be devised which will meet the
needs indicated by the question above. One which we advocate is
outlined below.
SUMMARY
To organize a group for the purpose of designing a comprehensive
curriculum of sexuality training for the moderately and severly
retarded, the following procedure is offered as a guide:
The group should have representation from each of the four social
units considered in this workshop.
1. Families of retarded persons
2. Educators from public and private school servicing
trainable and severely retarded children and young
adults.
3. Representatives of various religious denominations
4. Community organizations and individuals concerned with the
retarded, such as
Associations Programs
Medical Programs
Representatives from the field of Psychology
Social Service Agencies
Representatives of these social units will need to be sensitive
62
to the complexity of the subject and the range of opinions within their
group. One method of meeting this need is to pursue group discussion
around the following suggested question and record individual opinions
(the method used in the workshop).
1. Who should be responsible for the sexuality education
of the retarded?
2. What should be taught?
3. Where do you anticipate problems?
4. How can the contributions of each member of the
group be brought together for a comprehensive
sexuality education program?
Consistent with the reactions gathered at this workshop, it can
be expected that the group will recognize that no single program will
meet the needs as seen by each participant. The group should assume
the responsibility of identifying common areas of need which may serve
as a core program for the family and school of for a designated
teaching agent.
Frequently, there is a branching off from the core program at the
age of puberty, when content becomes inseparable from philosophical
and moral beliefs. At this point the churches may provide the learn-
ing experiences from a particular point of view. Also, during this
period, families may seek the assistance of services rendered by com-
munity organizations, such as Planned Parenthood and various counseling
agencies. It is, of course, possible that the school may assume the
63
responsibility for all aspects of the sex education program, if this
is the course decided upon by all concerned.
A visual model that reflects considerations and possible inter-
actions in designing a sexuality program is on the following page.
64
VALUES
CONTENT
Family
Family
School
OBJECTIVES
School
Church
Church
Community
Community
FAMILY
Who will teach?
What?
Where?
When?
How?
PROGRAM
SCHOOL
CHURCH
Who will teach?
P
P
Who will teach?
SEXUALITY
Who will receive?
R
R
Who will receive?
AND
What?
O
O
What?
THE T.M.H.
Where?
G
INDIVIDUAL
G
Where?
When?
R
R
When?
How?
A
A
How?
M
M
PROGRAM
COMMUNITY
Who will teach?
Who will receive?
What?
Where?
When?
How?
WHAT: Human needs and Factual Knowledge
WHERE: Place of Instruction
WHEN: Time in Terms of Individuals Development
HOW: Methods and Materials
65
Some Considerations on Sexuality
and the Mentally Retarded
Joseph T. Weingold
Since we are dealing with some 6,000,000 individuals, many of them
adults or at least at the age when interest in sex usually appears, it
is obvious that this is a topic of some importance, if not society,
certainly to these individuals.
What disturbs me, however, in the literature that I have read on
the subject, as well as the program of this meeting, is that a consid-
eration of sexuality and the mentally retarded may be motivated by
considerations other than the welfare of the mentally retarded and the
sublimation or realization of their drives and aspirations.
Although generally dismissed after being raised, the subject of
eugenic control and the eugenic alarms of the early 20th Century seems
to appear almost everywhere in the literature. Although experience
has shown over and over again that the sterlization of the mentally
retarded does not prevent the birth of mentally retarded or reduce the
mentally retarded population in any significant way, we nevertheless
see this consideration brought up with regularity. It may be a straw
man to knock down; in that case why raise it with such frequency? Are
we saying, we don't believe in old taboos, but we're taking no chances?
Again and again we see concern expressed for the safety of the
community, the welfare of children born from a union of the mentally
retarded, unwanted pregnancies, etc. etc., but nowhere have we really
seen studies in depth as to the consequences of children born to
66
marriages of the mentally retarded, whether, indeed, mentally retarded
individuals reproduce mentally retarded individuals or whether the
uninhibited sexual activities of the mentally retarded are a menace to
society.
If this is a legitimate concern, we must look to our own failures,
the apparent, helplessness of society to provide the viable programs
for the mentally retarded in the community, the abominable conditions
in most institutions for the mentally retarded, the abysmal ignorance
of the courts with regard to mental retardation and their terrible
confusion of mental retardation and mental illness in their treatment
of offenders. If we are honest, we must say, "What is this all about?"
Further than that we must say, if, indeed, this a problem,
"Who is going to handle it?" The very society that has failed with nor-
mal individuals, the very courts that have failed with so-called
individuals of normal intelligence don't know what to do with a men-
tally retarded offender.
This is not to say that sexuality of the mentally retarded is not
a question that should be discussed and dealt with, but I feel it is
not any greater a question than sexuality of normal people with all
our taboos, customs, and rites that surround our sexuality. This
problem is of a piece with the failures of our society.
A great deal is said today about the so-called "normalization"
of the mentally retarded. If, indeed, we mean this then we must treat
the sexuality of the mentally retarded as we would sexuality of anyone
67
else. But can we do so? Some 200,000 mentally retarded persons are
in state institutions. In these institutions they are segregated by
sex. In these institutions, we have the same problems of homosexuality,
self gratification or masturbation, rape, pregnancy, and all the
others that exist in any congregate institution, whether it be in mental
health or correction. So we must say that the very fact that we
have institutions is a negation of the process of normalization, and
therefore, the question of sex cannot be treated in a normal way when
there is this segregation.
Added to this is the problem that there is no such thing as men-
tal retardation. What we have are persons of mentally retarded
development. Each is an individual and each functions at a different
level of understanding and accomplishment. Any program that is to
deal with sexuality of the mentally retarded must take into considera-
tion, therefore, the differences between the mentally retarded in
institutions and those in the community, the mentally retarded who are
capable of leading fairly normal lives after school and those who need
continuous care, the continued and ongoing anguish of the parents,
their fears, their drummed-in prejudices and discriminations, yes,
even against their own children, all reflection of our society.
This is indeed a very complicated issue. Do we deal with this as
a mess sergeant dealt with the mother of a recruit who wanted to know
the recipe for apple pie which she found so tasty as a Sunday dinner
in camp. "Why sure, ma'am", said the sergeant, "you take a ton of
68
apples. if Or are we going to individualize this problem and deal
with it as it should be dealt with with normal people.
I would say that one of the first things we must consider if we
are going to educate the retarded about their interest in sex and what
it means, is to deal with the retarded in our world as normal human
beings. The consequences of dealing with them as normal human beings,
it seems to me, are that we tell them about sex as we would everyone
else but in terms of their comprehension.
Normalization is not institutionalization by attrition; normali-
zation is not schools that don't know how to educate them; normaliza-
tion is not sterilization laws for the mentally retarded in over 20
states; normalization is not special education which is not special
and not education; normalization is not discrimination in employment,
in housing and even in commerical space. Normalization is not using
the mentally retarded as peons in institutions.
Normalization is the assumption that these persons are entitled
to all the rights, privileges and advantages as well as disadvantages
of society enjoyed by everyone else. Why should we be SO worried about
a high degree of unwanted pregnancies in the mentally retarded unless
we couple this with a worry about the high degree of pregnancies for
all persons. The consequences of broken marriages and divorce are
equally bad for normal as well as for retarded persons. There are
normal persons as well as retarded persons who never should have chil-
dren. There are normal persons who should not get married for that
69
matter, as well as the retarded. As for homosexuality, it is just as
rife if not more frequent among persons of normal intelligence than it
is among the mentally retarded.
Yet, it would be foolish to say that there isn't a special prob-
lem, but I submit it is not as special as some individuals would seem
to want to make it. The special problem is one of educating or teach-
ing the mentally retarded that what they feel is normal, not bad, and
should be utilized in constructive ways, if possible. The literature
is replete on ways how to do this and Dr. Gordon has taken a very
leading role in this. But it is not something new. As far back as
1951, our Association has had parent education courses which included
sex education for the mentally retarded. As far back as 1951, we were
confronted with sex interaction between the mentally retarded in our
group, at least several unwanted pregnancies, a number of marriages
that we had to watch carefully, any number of cases where the retarded
were before the courts for "soliciting" male policemen in toilets in
the subways, questions from parents about sterilization and any one of
the many, many problems that confront people in these special situa-
tions. Rudolf Hormuth and I wrote a monograph for the Journal of
Clinical Psychology an Counseling the Mentally Retarded and Their
Parents which included a great deal on sex education of the mentally
retarded. This monograph described, for example, the discussions over
a ten month period with one group that covered such areas as the
parents' lack of confidence in their children and the parents' fears
70
to permit the retarded individuals to assume responsibility, behavior
problems and how to handle them, problems of sex, goals which could be
achieved, etc. The discussions were permitted to develop from the
kinds of problems the parents were struggling with and out of the "new"
problems which arose as a result of the club program and the new and
different stimuli to which the children were exposed.
All the discussions were approached from individual problems or
questions and sessions were ended with a general conclusion or summary
drawn from the discussion. In this way, each member of the group had
some part in formulating the conclusion and felt much more personally
involved in it. As a result, it was possible to take such "risks" as
permitting a 22 year old retarded son to travel on the subway alone or
to go to a movie in the evening with a friend. Such steps could never
have been accomplished with these parents on an individual guidance
basis, even though their children had long been ready for this and
were capable of it. They had to have the support of other parents
and most important, a program for the children as a frame of refer-
ence and hope.
The initial questions of discipline and control changed to ques-
tions of how can we get our children to travel alone, handle money,
manage an allowance, find and hold a job. In certain areas there was
a danger of the parents moving too fast and suddenly expecting too
much as they began to see some further social development in their
children for the first time in many years. All their repressed an'd
71
forgotten hopes were reactivated. Typical of this is the whole ques-
tion of sex. Whereas in the initial phases there were intense fears
about permitting any of the children to be unsupervised at any time or
to travel alone for the fear of someone "talking advantage" of them
sexually, these problems gradually were refocused on areas such as:
"Could these children understand about sex?", and finally, after
several months, to questions of "Should we allow them to date?" and
"Is marriage feasible?".
Probably the best criterion for evaluation the effectiveness of
group guidance for parents within this program is the manner in which
discussion material was translated into changed attitudes and improved
handling of the children. This development reflected itself very
clearly in the improved adjustments of the children and their very
marked and rapid progress in social adaptations.
One of our first club groups, for example, started with 20
retarded males and females ranging in age from 18 to 27 with I.Q.'s of
approximately 50 to 75. There were various diagnostic categories and
a number of individuals had been institutionalized at one point or
another. At the start only three members of this group were working
and only five knew how to travel by themselves. By and large, they
were completely dependent upon their parents, showed very little inter-
est in their surroundings, had no friends and had a great deal of
difficulty getting along with others (one of the chief reasons why
many were not working). After 1½ years all but two of this group were
72
working, all were travelling by themselves, managing allowances, con-
ducting their own business meetings, electing club officers, publishing
their own club paper, dating club members of the opposite sex, meeting
each other for card games, theatre parties, etc.
Admittedly part of this development was due to the club program
with the young adults themselves. It is clear, however, that even this
factor could not have operated unless the parents were involved and
permitted their children to assume responsibilities and effectively
implement the two-hour weekly club sessions with changes of their own
during the remainder of the week.
I don't know whether this latter day concern with sex education
is a step forward in our relationship with our children or a reflection
of the crumbling concepts of society that we have held so dear for so
many years. Many of us learned about sex in the streets. Was it good?
Was it bad? I don't know. It depends a great deal on the individual.
In my generation, so-called mental hygiene was not introduced into the
schools until late in my school career and then it was in terms of
venereal disease without very much explanation of anything. It was an
age of innocence and I doubt very much whether we knew too much about
venereal disease or how it came about even though it was thrown at us
in mass lectures. But it was not such an age of innocence that all
that we hold as threats to society did not exist. In fact our attitudes
then were rather primitive. Homosexuality was not considered a pri-
vate prerogative of anyone. There were laws making homosexuality a
73
crime. Although we now live in a permissive society, it is interesting
to note that homosexuality is still a crime in New York State.
Our concern today, it seems to me, flows from the crumbling fabric
that I have mentioned before. It is we who must now concern ourselves
with the consequences of sexuality or interest in sex and how it is
sublimated or accomplished or steered, who are the very persons who
have contributed to the situation which makes this necessary. The
failures of the young and the failures of marriage and the failures
with regard to sexuality control or good channelization are our fail-
ures. Are we now engaged in some great self therapy or group therapy
on a massive scale?
These are some of the considerations we must make when we talk
about the sexuality of the mentally retarded. I feel it is part of
the very fabric of our society and the normalisation process for the
retarded. Counseling should begin with society itself down to the
family and then to the retarded. To talk to the retarded alone is
going to be a self-defeating process in most instances. It must be
accompanied by a massive re-education program of society. This finally
comes down to the question of how much we can change the retarded for
the world's sake and how much we must change the world for the
retarded's sake.
I do not mean to minimize the problems that arise. I think we
are all aware of them. What I am concerned with is that we should not
)e overwhelmed by labels such as mental retardation, but we should be
74
oops
Jes
threatened by the failures of our society, and how they deal with
these labels.
I hope that the considerations I have presented will induce us to
take a new look at the mentally retarded, how they fit into our soci-
ety, as whole human beings, including their right to sexuality.
References
1. Weingold, Joseph T. and Hormuth, Rudolf P. Group Guidance of
Parents of Mentally Retarded Children, Journal of Clinical
Psychology, 1953, Monograph Supplement No. 9.
75
Attitudes Toward Sexuality of the Mentally Retarded
Dr. Karl E. Thaller
State University College at Potsdam
Participants at the Conference on Sexuality and the Mentally
Retarded were asked to complete a questionnaire which sought to measure
basic knowledge and attitudes toward the subject matter of the confer-
ence. Both pretests and post tests were administered to establish the
amount and classes of information transmitted by the scheduled program
or speakers. The questionnaire also attempted to measure basic atti-
tudes held by the general public toward the mentally retarded in the
area of sexuality.
The first objectives of the conference was to bring the best
information regarding the sexuality of the mentally retarded to par-
ents, interested individuals, and professionals in Northern New York.
In an attempt to see how well this information was transmitted to
the conference participants the questionnaire was constructed to con-
tain 33% factual questions. The "answers" to the factual questions
were provided within the structure of the conference. The pre-post
test scores improved on 90% of these factual questions.
Attitudes:
The second objective was to provide participants with a sound
basis to evaluate their own attitudes regarding sexuality with special
reference to the mentally retarded.
76
While taking the questionnaire, each participant had the theoreti-
cal possibility of answering all questions in a positive or negative
manner in reference to their views towards the mentally retarded.
Since the second goal of the instrument was to measure the degree and
types of people having specific attitudes towards the mentally retarded,
the questions were written in a manner intended to allow the partici-
pant to "color" the question with their own views. Thus, by looking at
patterns of specific answers, basic positive and negative attitudes
were allowed to emerge.
All the questions of the instrument were previously rated by a
panel of judges in reference to the general positive or negative over-
tones inherent within each question. A final comparison was made
between the judge's view of the question's bias and the participants'
response. The comparison produced a final positive, negative, or
neutral attitude assignment given each question. These values were
then totaled for the various groups answering the questionnaire. It
seems as if the conference speakers were very effective in presenting
their views as the measured change in positive attitudes increased by
60% at the end of the conference.
Even with the increment in total positive attitudes there still
remained a body of negative feeling toward the mentally retarded when
the participants considered the area of sexuality.
It is of no news that negative attitudes are held toward the
mentally retarded. Of more interest would be to know what types of
77
negative values are held. With this knowledge, perhaps specific
information directed towards the public may act to reduce there nega-
tive views. The negative attitudes were divided into five basic
categories.
I. General Attitudes:
These questions were not directed toward only one topic of sexu-
ality, but rather sampled broad attitudes of the rights of the mentally
retarded to express themselves sexually.
II. Sex Education for the Mentally Retarded:
The entire problem area of sex education was explored from when
to begin, who will act as teacher, what parent involvement is needed
and what general effects of sex education would be expected.
III. Sexual Activities of the Mentally Retarded:
This section of questions taped attitudes about the various
problems associated with sexual activity such as masturbation, homo-
sexuality, sex offenses, V.D., etc. In addition, questions on the
sexual drive and the ability of the mentally retarded to control their
sexual drive were asked.
IV. Sexual Relationships Between Retardates:
Views of the control and capability of sexual expression were
established in this section. Additional questions about marriage,
procreation and family life were also asked.
V. Birth Control:
Attitudes toward the effectiveness of birth control methods and
the ability to use these methods were established in this section.
78
Table 1 lists those specific areas where negative values were
found to be held by the representative participant groupings.
Table 1
Areas of Greatest Negative Attitudes Held by Each Participant Group
Group
Area
Parents of Mentally Retarded
Sex Education
Medical Administrators
Sexual Activities
Association for Retarded Children
Birth Control
Community Action Planning (O.E.O.)
Sexual Activities and
Birth Control
Community
Sexual Activities
Education
Birth Control
Justice
Relationships of Mentally Retarded
Planned Parenthood of
Northern New York, Inc.
Relationships of Mentally Retarded
Professional
Sexual Activities
Social Services
Sexual Activities and Relationships
of Mentally Retarded
In addition to these statements about specific participant groups,
some statements can be made about all participant groups in general.
A. The most positive attitudes expressed by the entire group
were in Category I (General Attitudes Toward Retardates).
B. The most neutral category was Category IV (Relationships
of Retardates).
C. Negative feelings were highest in Category III (Sex Activities:
Levels and Problems).
The group attitudes were further broken down with a comparison
79
being made between the professional and paraprofessional working for
the various agencies with the mentally retarded. It is of great
interest to examine those persons who have not had extended profes-
sional experience or training and to compare their basic knowledge and
attitudes with the professional personnel. The results were very
encouraging in that the informational base and information gained from
conference attendance as well as the attitudes held by the parapro-
fessionals did not differ greatly from the professionals. When com-
pared to the general public, both the paraprofessional and professional
seem to reserve more neutral attitudes than did the general public toward
the mentally retarded.
One further examination of the group attitudes was made on the
basis of age of participant. It was found that the younger partici-
pants (21-30) expressed more positive and fewer negative attitudes
than did the older participants (41-50) although the informational
base did not differ between the group, a factor which suggests preju-
dice toward the mentally retarded rather than lack of knowledge.
80
An Introduction to Genetic Counseling
With a Suggested Approach by
Planned Parenthood of Northern New York, Inc.
James Orr, M.D.
Medical Project Director, Clinician
Planned Parenthood of Northern New York, Inc.
Genetics is the study of the inherited characteristics of plants
and animals. Human genetics can be divided into three categories. The
first is the classical approach of constructing a family tree or medi-
cal history. The more detailed and extensive the history, the higher
the degree of accuracy of prediction of the genetic trait in question.
The second category is cytogenetics. This is the microscopic study of
individual cells or cell cultures, either from the body (soma) or sex
linked. The position and number of the chromosomes and their contained
genes (the protein bodies that actually transmit the characteristics)
are examined. Determination of many abnormalities can be detected in
this manner. The third category of genetics is biochemical. The
living cell is cultured and the products of metabolism are tested for
the presence or absence of certain chemicals. Many of our inherited
conditions have characteristic alteration of body chemistry and this
fact can be used in both diagnosis and treatment.
During the last decade, the knowledge of human genetics has
increased rapidly. In the future, premarital testing will not only be
concerned with syphillis, but will probably include predictions as to
81
characteristics of children parented by the people.
In some genetic work, there are indications that alterations in the
inherited characteristics of the unborm child or even production of
human beings outside the human uterus may be possible.
Genetic manipulation to affect succeeding generations is not a
recent concept. The primitive man who ate the heart of his dead enemy
to gain his courage was attempting to manipulate inherited
characteristics.
Gene manipulation, where the undesirable characteristics can be
removed from the individual sperm or ovum, is still in the future.
Diagnostic appraisal of some congenital characteristics is with us at
the present time.
One methods of diagnosis is amniocentesis. The procedure involves
the aspiration of amniotic fluid from the sack containing the unborn
fetus. The cells found in the fluid are then cultured. The procedure
is minimally hazardous, but should not be performed casually or by
untrained personnel. The cultured cells are examined under high magni-
fication for chromosome defects. Because it cannot be done until the
pregnancy has already been established, the only corrective action if
the fetus is defective is abortion. Another method of cytogenetics
depends on the culture of lymphocytes, one of the white blood cells.
Similarly sperm cells can be examined. With the use of these tech-
niques, our society is in the early stages of predicting and sometimes
peeventing the birth of malformed children. Under the microscope,
82
these cultured cells show distortions in the shape of the chromosome
or placement of the genes on the chromosome. For example, the mongo-
loid child may be the result of four different genetic irregularities.
The importance of determining which abnormality caused the mongolism,
affects the counseling of the parents concerning future pregnancies.
There are over 1500 known genetic conditions with more being added as
research continues. One percent of live births have chromosomal
defects with two-thirds of this one percent being mentally retarded.
We all look for the simplified answer to our problems. In the
field of genetics there is no easy way. Up to 80 percent of all men-
tally retarded have unknown causation. In many cases where we make a
diagnosis. through cytology or biochemistry, we cannot say why it
happened. The gene itself, the basic unit of heredity, is extremely
stable. However, at certain periods early in pregnancy, it is vulner-
able to small amounts of radiation, decreases in oxygen, or viral
infections. When the patient asks a specific question concerning his
or her likelihood of transmitting a hereditary characteristic or
disease, the first step is a complete genealogical history. The sta-
tistical answer to the patient's question depends on complex parameters
involving dominant or recessive traits, heterogenicity, mosaicism, and
many others.
The determination of the statistical possibility of inheriting a
specific genetic trait should be done by medically trained personnel
with specialized genetic knowledge and only after an accurate diagnosis
83
is made. The ramifications of what would seem to be a simple question
can involve knowledge of diseases, biochemistry, cellular biology, and
the interpretation of medical records from multiple sources. The
decision as to the necessity of amniocentesis must take account
that it is not always a totally safe procedure. (See indications
for amniocentesis, page 86.)
The discovery that a male with an XYY chromosome, rather than the
normal XY chromosome, has marked antisocial behavior patterns is the
first clue that traits affecting behavior as well as those affecting
physical appearance are inherited. As other inherited behavioral char-
acteristics are located by geneticists, it may be possible to predict
some personality attributes of a child prior to its birth.
Cloning, the reproduction of an individual from a single cell, is
theoretically possible. Recently a normal frog was grown from a cell
without fertilization. The human clone, if is were possible, would be
an exact image of the person from whom the cell was obtained. An army
of identical looking and thinking people could be produced or the cell
of a genius could be used to produce other identical geniuses. This
would be a type of immortality. The actual accomplishment of cloning
in humans is still distant, but the ethical considerations of this type
of experimentation will have to be faced soon.
Because of the highly technical nature of cytogenetics and bio-
chemical genetics, these two approaches are handled only in specialized
laboratories, In the upstate area, Albany, Syracuse, and Rochester are
84
the nearest centers capable of these techniques. (See page 87 for list of
services available at these centers.)
Sunmount State School for the mentally retarded at Tupper Lake is
proposing a counseling program involving genetics on an out-patient,
individual referral basis. (See page 90 for an outline of proposed Sunmount
services.)
There are some physicians within this area who are involved to
some degree in genetic counseling. These physicians are able to send
specimens to the specialized laboratories mentioned above.
Planned Parenthood of Northern New York, Inc., has contact with
several thousand women who are in their reproductive years and who
desire to space and/or limit pregnancies for various personal, social,
and medical reasons. Thus, Planned Parenthood is in a logical and
strategic position to supply information relating to genetic questions.
If Planned Parenthood were to increase its role in the area of
genetic counseling, the first action on its part in dealing with a
concerned potential parent would be the determination of need for gene-
tic studies. The second would involve sending specimens to one of the
centers described in the attached list for cytogenetic and biochemical
evaluation. A preliminary genetic history could also be done. Depend-
ing on the results of the laboratory studies and the patient's history,
further referral could then be made if indicated.
In Planned Parenthood clinics, many patients are seen with prob-
lems that could be basically genetic in origin. Because the Planned
85
Parenthood patient has already expressed interest in her general
health by coming for information regarding contraception, the extension
of her interest to a genetic workup should be a logical step. Patient
education as to what can be expected to be gained is of critical import-
ance. The science of genetics, although rapidly advancing, is still in
its infancy, and many conditions which can de detected cannot as yet be
treated. However, in cases where natural parenthood may not be advis-
able, referrals, when desired, can be made to adoption agencies. Addi-
tionally, the body of information derived from a program of this type
should be of great value to researchers. This could be made available
through the International Genetics Foundation which has established a
system for exchange of genetic information.
The county chapters of the Association for Retarded Children in
St. Lawrence, Jefferson, Lewis, and Franklin Counties are also in a
strategic position to offer education and/or service to persons con-
cerned about genetic factors affecting retardation. It is anticipated
that these agencies will be able to work together toward an integrated,
comprehensive counseling program for Northern New York.
86
Criteria for Diagnostic Amniocentis
Taken From:
Birth Defects-Genetic Services
Third Edition September 1971
National Foundation-March of Dimes
1275 Mamaroneck Avenue
White Plains, N.Y. 10605
1. Family history of gene transmitted or chromosome abnormality
2. Previous birth of retarded or malformed child
3. Parents with balanced chromosomal translocation
:
4. Viral infection first trimester (German Measles)
5. Poor previous pregnancy history
6. History of exposure to mutagens (Thalidomide, Tetracyclines,
Aspirin)
7. Rh factor
8. Advanced age of mother (over 35 years)
9. Sex determination
10. Research controlled data
87
Taken From:
Birth Defects-Genetic Services
Third Edition September 1971
National Foundation-March of Dimes
1275 Mamaroneck Avenue
White Plains, N.Y. 10605
Albany, New York
Ian H. Porter
Biochemical Genetics
N.Y. State Dept. of Health
Birth Defects
Birth Defects Institute
Clinical Genetics
Albany Medical College
Cytogenetics
Dept. of Pediatrics K 116
Genetic Counseling
Hematology and Blood Groups
Immunogenetics
Molecular Genetics
Population Genetics
Twin Studies
Virology
Rochester, New York
Philip L. Townes
Behavioral Genetics
Division of Genetics
Biochemical Genetics
Rochester Univ. Med. School
Birth Defects
Clinical Genetics
Computer Analysis
Cytogenetics
Dental Genetics
Dermatoglyphics
Electron Microscopy
Genetic Counseling
Hematology and Blood Groups
Immunogenetics
Molecular Gentics
Twin Studies
Linkage Studies
Amniocentesis
Syracuse, New York
L. I. Gardener
Biochemical Genetics
Dept. of Pediatrics
Birth Defects
Upstate Medical Center
Clinical Genetics
Cytogenetics
Dermatoglyphics
Genetic Counseling
Linkage Studies
88
GLOSSARY
Alleles - Alternate forms of genes which occur at the same locus on
a chromosome.
Amniotic fluid - The liquid contained in the sac in which the unborn
fetus floats; amniocentesis; the removal of amniotic fluid.
Chromosome - The protein body which contains the hereditary material
DNA.
Clone - Cells all derived from a single cell by repeated mitosis and
all having the same genetic constitution.
Cytogenetics - The branch of genetics concerned mainly with the
chromosomes and correlation with the phenotype.
DNA - Bexyribonucleic acid, a complex protein present in chromosomes.
It carries the genetic information.
Dermatoglyphics - Study of the surface markings of the skin, especially
those of the hands and feet.
Gene - Self reproducing/microscopic particles found within cells and
located at definite points in the chromosome.
Genotype - The genetic constitution, either at one specific locus on
the chromosome or more generally.
Heterozygous - Possessing different alleles at a given locus on the
chromosome.
Homozgous - Possessing identical genes at a given locus on the
chromosome.
Linkage studies - Location of genes on the same chromosome.
Lymphocytes - A white blood corpuscle which normally numbers from 20%
to 50% of the total white blood cells of the circulating blood.
Mosaicism - Presence in the same individual of two or more distinct
but related cell populations rising from a single cell type
either by gene mutation or chromosomal aberrations.
Mutagens - That which can cause a mutation.
89
Mutation - A change in the genetic material.
Pharmacogenetics - That part of genetics concerned with the relation-
ship between genotype and drug effects.
Phenotype - The observable characteristics of an organism.
RNA - Ribonucleic acid, one type of which is the messenger between
DNA and the protein synthesizing machinery in the cell.
Sex linked - Determined by a gene located on the X chromosome.
Translocation - The displacement of part or all of one chromosome
to another.
90
Outline for Family Planning
Counseling Program of Sunmount State School
Richard L. Francis, M.D.
Director, Sunmount State School
I. OBJECTIVE.
Sunmount State School, as part of its out-reach services into the
community, is in the precess of developing a Family Planning Coun-
seling Program for prospective applicants within its School Service
District. The program will line up with or dovetail into community
efforts already going on by qualified agencies, as for instance,
the Planned Parenthood Program represented in our area through
their respective county chapters. It will be carried out directly
by our professional staff with the support of specialized state
agencies. Our function will consist of evaluation and advice with
case follow-up readily at hand. The following is a detailed break-
down into program elements:
A. Assisting parents or prospective parents in family planning
as to:
1. Size of family.
2. Timing of children.
B. Helping parents in their decision-making process as to what
risk to take regarding the issuance of nonhealthy progeny.
II. MEANS
Means to achieve program objectives (I A 1 & 2):
A. Preventive methods:
1. Contraception.
a. Male: Condom and Sterilization
91
b. Female: Membrane, Spermatocidal foam, IUD,
Sterilization and "The Pill".
C. Male and Female: Rhythm method.
2. Postconceptional methods: Legal abortion, surgical (no
chemical abortive).
B. Child producing methods:
1. Correction of impotentia, coeundi.
2. Correction of impotentia, generandi.
3. Artificial insemination.
4. Adoption.
C. Means of achieving program objectives (II B).
1. Classification of the case at hand (if possible diagnosis)
on basis of family history, history of pregnancy, descrip-
tion of birth process, birth weight and observation during
neonatal period and later life under appropriate consider-
ation of psycho-social (environmental) factors.
2. Prediction on empirical (statistic) or otherwise scien-
tifically based information of degree of expectancy of
monhealthy offspring (considered are genetic, metabolic,
hereditary, developmental, familial diseases, "accident
children", disadvantaged biological variants).
III. CONCLUSION
The program directly and tangibly offers help and comfort to
responsible parenthood. Above and beyond, it serves the following
basic rights:
A. Right of the parent to access to information for reasonable family
planning
B. Right of the child to
orn healthy.
92
SEXUALITY
AND THE
MENTALLY
CONFERENCE
PROGRAM
RETARDED
Senator Barclay,
" A Look at Legislation"
Mr. Collins,
"Mental Health Services"
Mr. Coughlin,
"Legal Aspects of Birth Control for the
Mentally Retarded."
Dr. Sol Gordon,
"Sexuality and the Mentally Retarded:
WORKSHOPS
Telling It Like It Is or Making It Sound
Good."
Dr. Gordon, Father Leonardo
Mrs. Kempton,
"Management of Sexual Problems Among
"Marriage, Parenthood, and Birth Control
Mentally Returded; What to Do. What
for the Mentally Retarded."
Not to Do." (EDUCABLE)
Dr. Mildred Kistenmacher,
Mr. Hassett
"Genetic Counseling for the Mentally
"Sex Education in the Home, School
Retarded."
Church, and Community for the Mentally
Retarded." (EDUCABLE)
Father Leonardo,
"Roman Catholic Moral Theology and the
Dr. Hemmeling
Retardate."
"Management of Sexual Problems Among
Mentally Retarded; What to Du What
Dr. Meyerowitz,
Not to Do." (TRAINABLE)
"Bridge Over Troubled Waters."
Mrs. Ortinau; Mrs. Scarborough
Mr. Weingold,
"Some Considerations in Planning a Sex
"Some Considerations of Sexuality and the
Education Program for the Trainable
Mentally Retarded."
Mentally Handicapped." (TRAINABLE)
93
SEXUALITY AND THE MENTALLY RETARDED
CONFERENCE LEADERS
H. Douglas Barclay, Chairman, Senate Committee on
Winifred Kempton, M.S.S., Director of Education
Mental Hygiene.
and Community Organization, Planned Parent-
hood Association of Southeastern Pennsylvania;
William Collins, Probation Director, St. Lawrence
coauthor of Love, Sex and Birth Control for
County.
the Mentally Retarded.
Thomas Coughlin, Executive Director, The Jefferson
Father John Leonardo, Chaplain, Rome State School,
County Association for Retarded Children.
Rome, New York.
William Cuthbert, Rev., Planned Parenthood of Nor-
Joseph Meyerowitz, Ph.D., Hadassah-Wizo Canada
thern New York, Inc., Board of Directors.
Research Institute, Jerusalem, Israel, author of
article, "Sex and the Mentally Retarded".
Sol Gordon, Ph.D., Professor of Family and Child
Development, Syracuse University, New York;
Margaret Ortinau, M.S., Curriculum Director, Ada S.
author of Facts About Sex.
McKinley Community Services, Chicago, III-
inois.
Edward Hassett, Rehabilitation Counselor, Associa-
tion for Retarded Children.
Willie Scarborough, Coordinator of Trainable Men-
tally Handicapped Children, Chicago Public
Joseph Hemmeling, Rehabilitation Counselor, Jeffer-
Schools, Chicago, Illinois.
son County Association for Retarded Children.
Janet Summerville, Executive Director, Planned Par-
Graham R. Hodges, Rev., President, Planned Parent-
enthood of Northern New York, Inc.
hood of Northern New York.
Joseph T. Weingold, Executive Director, New York
Robert E. Johnson, Ph.D., Director, Office of Contin-
State Association for Retarded Children.
uing Education, State University College at
Potsdam.
COOPERATING AGENCIES
Association for Retarded Children (County Chapters)
Planned Parenthood of Northern New York, Inc.
Community Action Planning (O.E.O.)
State of New York Department of Health
Department of Social Services
State of New York Department of Mental Hygiene
Office of Economic Opportunity
State University College at Potsdam
MODERATORS
William Cuthbert, Rev., Planned Parenthood of Nor-
Richard Laurin, Executive Director, St. Lawrence
thern New York, Inc., Board of Directors.
County Association for Retarded Children.
Karen Duflo, M.S., Director, Lewis County, Planned
Maryclaire Sherwin, Director, Franklin County, Plan-
Parenthood of Northern New York, Inc.
ned Parenthood of Northern New York, Inc.
Naomi Gray, New York State Department of Health,
Karl Thaller, Ph.D., Psychology Department, State
Naomi Gray Associates.
University College at Potsdam.
Mary Lambert, Executive Director, Jefferson County
Association for Mental Health.
RECORDERS
Linda Dickerson, Director, Jefferson County, Planned
Ruth Penrose, Department of Social Services
Parenthood of Northern New York, Inc.
Eva Humphries, Director, Lewis County Office of
Economic Opportunity.
94
SEXUALITY AND THE
MENTALLY RETARDED
A working conference held at the
State University College at Potsdam
Sponsored by the
OFFICE OF CONTINUING EDUCATION
supported by the
OFFICE OF ECONOMIC OPPORTUNITY
in a grant given to
PLANNED PARENTHOOD OF NORTHERN NEW YORK, INC.
with the cooperation of
ASSOCIATION FOR RETARDED CHILDREN (COUNTY CHAPTERS)
COMMUNITY ACTION PROGRAMS (O.E.O.)
STATE OF NEW YORK DEPARTMENT OF SOCIAL SERVICES
STATE OF NEW YORK DEPARTMENT OF HEALTH
STATE OF NEW YORK DEPARTMENT OF MENTAL HYGIENE
STATE UNIVERSITY OF NEW YORK COLLEGE AT POTSDAM
95
"Sexuality and the Mentally Retarded
This monograph is only one aspect of a year-long program
involving the effort of many persons. We would like to
acknowledge the excellent professional aid which the following
persons and offices have provided throughout the year.
Project Coordinator
Mrs. Sue Davis
Steering Committee Chairman
Reverend William Cuthbert
Project Evaluator
Dr. Karl Thaller
State University College at Potsdam
University Offices
Computer Center
Continuing Education
Duplicating Center
Educational Communications
State University College at Potsdam
University Consultants and Personnel
Bruce Buchanan
John Horan
Pamela Cullen
Dr. Robert Johnson
Dr. Thomas Cunningham
Lee LaBarre
Dr. William Davis
Eleanor Neagle
Dr. Clayton Farrall.
Dr. Laurence Rust
Victor Faubert
John Short
Robert Galligan
Dr. Anthony Salim
Dorothy Goldsmith
Dr. Robert Throop
Doris Hobson
Steering Committee
Joseph Beaudin
David Hardy
Reverend Wayne Pelkey
Orma Belden
Reverend Ladd Harris
Ruth Penrose
Clarence Bell
Betty Harwood
William Perkins
Patti Boardman
Janet Harwood
Raymond Polett
Susan Brown
Tim Hunt
Jean Prior
Sue Bryant
Dr. Relda Jean Johnson
Louise Ramos
Anne Carter
Dr. Deborah Kaplan
Robert Reed
Dr. Hans Corneille
David Kingsbury
Paul Reichhart
Thomas Coughlin
Nancy Kovach
Richard Reister
Marilyn Covey
Douglas Kraai
Marlyclaire Sherwin
Reverend Allan Dale
Lucie LaPlante
Robert Simmons
Linda Dickerson
Joyce Latulipe
John Stachnik
Reverend John Downs
Richard Laurin
William Sullivan
Karen Duflo
Rita LePlante
Janet Summerville
Fran Dumas
Percy Lyons
Ann Thomas
Carol Dunn
Barbara McGuire
William Tinsley
Anne Earle
Norma Miller
Lee Turner
Dr. Richard Francis
Thomas Moorehead
Jean Vaughn
Roger Funnell
F" "ime 00 anor
Trian Wilkinson
Gerald Gallagher
Dr. Jam
Robert Wood
Tom Guihan
Jean
Reverend Philip Zebley
SEXUALITY AND THE MENTALLY RETARDED
SECTION II
COMPANION MONOGRAPH
EDITORS: V. SUE DAVIS, M.S., PROJECT
COORDINATOR
AND
WILLIAM Q. DAVIS, PH.D.
INTRODUCTION
In recent years, it has become increasingly clear that
the mentally retarded have "normal" needs, desires, aspirations,
and frustrations. They have the right to education, the right
to seek and to hold employment, the right to develop their own
sexuality. Developing their own sexuality, however, has aroused
in some people, fear, speculation, and concern.
To many, sexuality means sex. The totality of the word is
lost; it is either unknown or misunderstood. Sexuality encom-
passes far more than sex, however, and each person begins devel-
oping at birth his own sexuality. He begins to identify his
role in life; he adapts and adjusts accordingly. He is pleased
with himself, and he is happy with others.
Fear and speculation is found in those who do not understand
mental retardation, and in those who have only a limited knowledge
of the word "sexuality". Those who speculate ask such questions
as, "The mentally retarded don't really have sex, do they?" And,
those who fear, ask, "Aren't the mentally retarded sexually per-
verted?"
Concern for the mentally retarded in the Northern New York
area has alleviated the fears and has quietened the rash specu-
lations. Such concern has educated and has sensitized the gen-
eral public about the sexuality needs of the mentally retarded.
It has shown that the difference in the sexuality needs of the
mentally retarded, and the sexuality needs of the normal indi-
vidual, is only a matter of degree.
Winifred Kempton stated in her presentation at the Septem-
ber Conference on SEXUALITY AND THE MENTALLY RETARDED that much
is heard about the normalization principle. She defined the
principle as an effort to treat the retarded as much like any
other individual as possible, but she stated that we had not
done this in the past. She further stated that if we were to
treat the mentally retarded as any other individual, this would
i
necessarily include the opportunity for marriage and parenthood.
This, then has been the impetus for the two conferences on
sexuality and the mentally retarded held at the State University
College at Potsdam, New York. The conferences provided avenues
for educating professionals, paraprofessionals, parents, and
interested individuals in such areas as the legal aspect, genetic
counseling, family planning, and the education of the mentally
retarded.
The Grant
Planned Parenthood of Northern New York received a grant
from the Office of Economic Opportunity to pursue the problem
of providing adequate family planning services to mentally re-
tarded individuals. On September 21, 22, 1972, the OEO-sponsored
grant made possible a conference which was held at the State
University College at Potsdam, New York. Dr. and Mrs. Karl
Thaller, State University College at Potsdam, edited the mono-
graph of the conference proceedings.
The goal of the conference was to examine the topic of
sexuality and the mentally retarded within a framework designed
to provide sound, factual, and procedural information which would
serve as a catalyst to the improvement of services available.
Much was learned over the year, and on June 22, 1973, a second
conference was held to further enlighten participants in the
area of sexuality and the mentally retarded.
The original OEO grant, number 21124, expired in June,
1973; however, an extension of the grant to December 31, 1973,
provided the means for publishing this companion monograph of
the June Conference proceedings.
The Objectives
The objectives outlined in the OEO grant for contributing
to the education of individuals working with the mentally re-
tarded were as follows:
1. To bring the best information regarding the
sexuality of the mentally retarded to parents,
ii
interested individuals and professionals in
Northern New York.
2.
To provide participants with a sound basis to
evaluate their own attitudes regarding
sexuality with special reference to the
mentally retarded.
3.
To prepare participants to serve as
catalysts in developing programs to meet
the sexuality needs of the mentally re-
tarded in their own communities.
4.
To evaluate the impact of participation
in this institute in terms of the new
services and programs developed and the
identification of unmet sexuality needs
in this area.
The Conference
The June Conference, sponsored by the Office of Economic
Opportunity, was designed so that the 200 participants attended
as a whole, several sessions in which noted personalities spoke
in such areas as law, family planning, education, and mental
retardation. The participants later broke into smaller groups
to pursue their own personal interests.
The conference was an outgrowth of the two-day conference
on SEXUALITY AND THE MENTALLY RETARDED held on September 21, 22,
1972. Almost-a year had transpired; changes had occurred; new
ideas had been born; the need to pursue these ideas was deemed
necessary.
The Monograph
The following presentations are compiled in an attempt to
further educate those individuals interested in the sexuality
of the mentally retarded. It is hoped that the presentations
will awaken in the reader an awareness of, an interest in, and
a concern for meeting the sexuality needs of the mentally re-
tarded.
iii
1
STERILIZATION OF MENTALLY RETARDED FEMALES IN NEW YORK STATE
Laurie Rockett, J.D.
In determining the legal situation with respect to steri-
lization of mentally retarded females, we have considered the
issue as applied to three categories: (1) retarded minors who
are not institutionalized and for whom no legal guardian or
committee has been appointed; (2) retarded adults in the same
situation; and (3) retarded females without regard to age who
have been declared legally incompetent and are institutionalized
or for whom a guardian or committee has been appointed.
Mentally Retarded Minors Not Institutionalized
Under the general principles of common law, it would ap-
pear that parental consent should be sufficient to authorize
sterilization of a mentally retarded minor. We have found no
cases in point. However, the authorities discussed below with
reference to adult and institutionalized retarded females sug-
gest that the retarded would be treated in the same way as other
minors, namely that parental consent should be sufficient.
There is statutory support both for the proposition that
parental consent is sufficient and for the position that the
operation may be ordered by a court. Section 2504 of the
Public Health Law, which confers capacity to consent to medi-
cal care on all minors eighteen and older, also provides in
Subsection 2 that "Any person who has been married or who has
borne a child may give effective consent for medical, dental,
health and hospital service for his or her child; also that
"anyone who acts in good faith upon the representation by a
person that he is eligible to consent pursuant to the terms of
the section shall be deemed to have received effective consent.
Since the section does not appear at all ambiguous in this respect,
This report, prepared by Eve Paul and Laurie Rockett,
associates of Greenbaum, Wolff, and Ernst, New York, New York,
was presented by Mrs. Rockett. Both Mrs. Paul and Mrs. Rockett
received their law degrees from Columbia Law School.
2
it would appear to authorize sterilization with parental con-
sent, at least where the operation can be shown to be for the
benefit of the child. Finally, an opinion of the Attorney
General, rendered in 1943, states that sterilization of a men-
tally defective girl is legal when her father has consented
and the operation is "for the purpose of protecting the health
of the individual. 2
If parental consent is not sufficient under these provi-
sions, recourse should be possible to @232 of the Family Court
Act which authorizes the court to order medical care for a
child within its jurisdiction. This section has been construed,
in conjunction with 8115 (b), to confer jurisdiction on the
Family Court to order medical care for the mentally retarded. 3
Despite this apparently sound legal authority for parental
and judicial capacity in this area, we cannot say that the New
York courts would order sterilization on application of the
parents under present law. We are aware that hospitals in up-
state New York have refused to perform such operations, and the
judges of some Family Courts have indicated that they believe
they lack jurisdiction to order sterilization. In addition,
two cases in other states where the issue of judicial authority
to order sterilization in the absence of authorizing legisla-
tion has been squarely presented have held that judges lack
such authority. 4 Indeed a judge ordering such an operation has
been held liable as acting outside his jurisdiction. 5
These cases may be distinguishable because the retarded
women for whom sterilization was sought were not minors; in one 9
the opinion specifically noted that her parents had no capacity
to consent because of the retarded woman's age, thus implying a
right of parents to consent on behalf of a minor. 6 In the sec-
ond, the mother had been officially appointed guardian of her
retarded daughter and the court's holding was based on a statu-
tory interpretation that a guardian's right to "charge and con-
trol" of her ward did not include the capacity to consent to
sterilization. 7 In the Wade case, involving the suit against
the judge, the age of the plaintiff is unfortunately not clear.
3
Although this case may be squarely in point, it is of course
not binding on the New York courts. It may, however, cause
some understandable reluctance on the part of the New York
courts to order sterilization in the absence of specific
authority.
The legislative history of the provision authorizing a
parent to consent to medical services for his or her child
is not particularly helpful. As pointed out above, the pro-
vision is contained in a bill whose purpose was to give all
minors over eighteen the capacity to consent. However, the
language of the subsection, in the context of the further
provision protecting persons who rely on consent given pur-
suant to the section, we believe suggests that a doctor or
hospital would not be liable in tort for performing a steri-
lization on a retarded minor with her parents' consent since
there appears to be no decision making sterilization or any
other medical service to the retarded an exception to the
general rule that parents can consent for their children.
Although as can be seen from the foregoing, the law in
this area is not clear, our opinion is that a doctor or hos-
pital would run little risk in relying upon parental consent
for voluntary sterilization of retarded minors even though the
courts may be reluctant specifically to authorize such a pro-
cedure.
We think that, with a view to the protection of the
patient and the patient's parents, and the rights of the
physician who is to perform the procedure, certain precau-
tions are advisable. A Hospital Review Committee might be
established consisting of a psychiatrist, a gynecologist, a
pediatrician, and perhaps a parent advocate and a child ad-
vocate. Such a Review Committee, or in its absence at least
two physicians, could make a written finding that steriliza-
tion is advisable for the purpose of protecting the health of
the patient and that the condition indicating the advisability
of sterilization is permanent.
4
Mentally Retarded Adults Not Institutionalized
Section 1750 of the Surrogate's Court Procedure Act re-
quires parental consent before the court may appoint a guar-
dian for a mentally retarded adult. This would seem to imply
that the parent is the guardian of such adult under the common
law. The Practice Commentary supports this conclusion. There
is also a New York case holding that the father of a mentally
ill patient who had never been judged incompetent has capacity
to consent to shock therapy for the patient, analogizing the
rule of parental capacity with respect to minor children to
the situation of the adult incompetent 8
A second New York court, holding a state institution lia-
ble for performing an abortion on a mentally incompetent adult
inmate without consent, indicated that parental consent should
have been sought. It also states, however, that application
for appointment of a committee would have been the proper course
of action.
9
The statutory provision, coupled with these cases, would
seem to offer strong support for a conclusion that the rule for
adults who are mentally retarded is the same as for mentally re-
tarded minors. The case for the voluntary sterilization of re-
tarded minors is stronger, however, because of the apparent
capacity of the Family Court or a parent to consent to sterilil
zation because in both the Public Health Law and Family Court
Act, the reference to "child" seems to mean "minor child."
In the absence of statutory support and given the unset-
tled nature of the common law regarding consent to sterilization
for the retarded person, the out-of-state case holding that par,
ental consent is not sufficient may be held to reflect New York
law. Nonetheless, on the strength of the two New York cases dis
cussed above, especially the abortion case which is a close ana-
logy, the present law of New York would seem to be more persuasi
and the extent of risk assumed by a hospital or doctor relying
or
parental consent to sterilization of a retarded adult would agai:
5
seem small though perhaps somewhat greater than in the case
of a minor.
Institutionalized Mentally Retarded Females (Adult and Minor)
With respect to retarded females, minor or adult, who
have been declared incompetent and institutionalized or made
subject to the control of a guardian or committee, the abor-
tion case cited above would seem to supply strong authority
for sterilization with the consent of the guardian or commit-
tee. The only authority to the contrary is the Texas case
denying the application of a legal guardian for sterilization
of her ward in the absence of a statutory provision specifi-
cally authorizing a guardian or court to consent. The Ken-
tucky case, on the other hand, indicates that a committee
might have. capacity to consent to sterilization of its ward.
It seems unlikely that New York would follow the Texas pre-
cedent in the light of the language of the abortion case.
References
1. Subdivision 3
2. Opinions of the Attorney General 1943, p. 336
3. In Re Leites, 328 N.Y.S. 2d 237 (1971)
4. Frazier V. Levi, 440 S.W. 2d 393 (Tex. 1969); Holmes V.
Powers, 439 S.W. 2d 579 (Ky. 1969)
5. Wade V. Bethesda Hospital, 337 F. Supp. 671 (S.D. Ohio 1971)
6. Holmes V. Powers, 439 S.W. 2d 579 (Ky. 1969)
7. Frazier V. Levi, 440 S.W. 2d 393 (Tex. 1969)
8. Anonymous V. State, 236 N.Y.S. 2d 88 (App. Div. 1963)
9. McCandless V. State, 162 N.Y.S. 2d 570 (App. Div. 1957)
aff'd 4 N.Y. 2d 797 (1958)
&
6
SEXUALITY AND THE MENTALLY RETARDED
Murry Morgenstern
The American Association on Mental Deficiency has a-
dopted a semi-official definition of mental retardation as
1
follows:
Mental retardation refers to the subaverage in-
tellectual functioning which originates during
the developmental period and is associated with
impairment in adaptive behavior.
This approach views retardation as a relative concept that
acquires meaning through reference to adjustment to concrete
social situations. One of the realms of social functioning
most problematic to the mentally retarded individual is that
of sexuality. It is the purpose of this report to examine the
marriage and parenthood patterns of retarded adolescents and
adults, and to determine the influence sexuality has on their
lives. As I shall point out later, this seemingly cut-and-
dried area of inquiry is one that has long been dominated by
a tone of puritanical hysteria and dearth of objective research,
making it difficult to draw any definitive conclusions.
Making Citizens of the Mentally Limited, a guidebook for
their parents and teachers published in 1927, summed up the
era's approach towards sexuality. It warned: 2
Statistics show that the feeble-minded girl is
much more likely to adopt the life of the street
walker or to fall into evil company than is the
normal girl. It follows, then, that the teacher
of the special class must be well-informed in
matters of sex hygiene in order that she may an-
ticipate the dangers to which her pupils are sub-
ject and be able to help avert them.
The book goes on to list certain attitudes that the teacher
should strive to inculcate in her mentally retarded charges:
3
New chology Division, Mental Retardation Institute, Valhalla,
Murry Morgenstern, Ph.D., is Associate Director of the Psy-
the lecturer on the overall concerns involving the sexuality a of
York. Dr. Morgenstern is recognized nationally as
mentally retarde
7
a. Girls should shun all strangers who make ad-
vances to them.
h. Both girls and boys should be modest in dress,
actions, and speech.
C. Disapprobation of obscene stories and sug-
gestive activity.
d. All references to sex that are made in class
should be treated casually and in a matter-
of-fact manner.
e. Disapprobation of "love affairs" between boys
and girls, simpering references to love, mar-
riage, etc.
f. Supervision of outside companions in order to
safeguard the pupils against evil.
g. Evil effects of masturbation.
Although few contemporary handbooks would be quite as open
about their disapproval of any and all references to the
existence of sexuality when one is in the company of a re-
tarded child, the basic ideas expressed in these passages
maintain their hold today. That is, the assumption that
mentally retarded persons are incapable of caring for them-
selves persists. They must be strongly supervised and con-
stantly guarded from the dangers and "evil effects" of sex-
uality. All references to love and marriage must be avoided.
What emerges is a dual image of the retarded individual as
being on the one hand, sexless and inert, and on the other
hand, innately oversexed and a potential threat to his com-
munity if his natural instincts are not controlled.
Recently, several psychologists have pointed out that
this type of attitude can have unintended consequences.
That is, it can actually lead to exactly the type of sexual
behavior it is trying to prevent. Sandtner describes the
process through which this occurs. We deny the sexuality
of the retarded child because we fear its presence. In this
way, we prevent the individual from expressing his normal
sexual drives, which will not simply go away on command, and
which are 4 then expressed in a distorted fashion. As Sandtner
states:
As we robbed the retarded of the normal sexual
outlets the rest of us take for granted, we were
forcing the sexual needs to fulfill themselves in
8
abnormal ways. By not providing the retarded
with opportunities for appropriate sexual ex-
perience, we leave them with a process of so-
cial trial and error that can only lead to the
very things we fear.
He gives the example of a retarded adolescent fondling little
girls in the neighborhood, and points out that this behavior
developed because the youth undoubtedly had no contact with
girls his own age and was never taught how to approach females.
Ell gives an additional example of what can happen when
the sexuality of the mentally retarded child is ignored.
5
When we are confronted with masturbation, in-
appropriate exposure, or experimentation with
other children, we forget that his normal sibling
was no different. We fail to give him the help
he needs in distinguishing between public and
private behavior. In frustration, we attempt
to extinguish rather than to channel such behavior.
In order words, most of the responses that are made to the
sexuality of the mentally retarded serve, in reality, to im-
pede their sexual adjustment. And, as others have pointed
out, it is giving them a one-sided idea of what the sexual
experience is all about. Because we respond with alarm when
the retarded expresses some sexual need and force him to re-
press the instinct, he comes to view sex as simply some sex-
ual urge or tension to release, and is never made familiar
with the interpersonal, 6 interactive aspects of sexuality. As
Ell points out:
We are surprised when the retardate views sex
as a single feared act, separate from relation-
ships and friendship and warmth, and separate
also from the whole set of behaviors which cul-
minate in a satisfying experience.
This most often stems from the fact that many parents and
professionals are skeptical of the retardeds' ability to
develop good social and interpersonal relationships with mem-
bers of the opposite sex. They are of the opinion that this
would inevitably lead to promiscuous sexual behavior. Another
aspect of this prote eness is that mar parents decide early
9
in their retarded child's life that he should never marry,
and they guard their child from this aspect by shielding
him from contact with individuals of the opposite sex.
But does the sexuality of mentally retarded individuals
have to be something to be feared and repressed? There have
been many different answers given to this question. In a
section on the sexual behavior of the mentally retarded ado-
lescent, a fairly authoritative text book focused its dis-
cussion entirely on the pathological aspects of its expres-
sion. The book states:
7
The retarded adolescent has extreme difficulty
in dealing with the increase in sexual drives
that occur during puberty. His resultant mal-
adaptive behavior reactions may take a number
of different forms, but the consequence of the
faulty resolution of the conflicts resulting
from the increased sexual energies may, in
general, be placed into three categories.
There may be (1) a significant diminution of
sexual interests and activities, (2) an ex-
cessive increase of sexual interests and
activities, or (3) the development of per-
verse forms of sexual behavior.
In light of our preceding scussion of the ways parents and
teachers can unintentionally create exactly the type of "de-
viant" behavior they are attempting to suppress, one wonders
whether these responses are natural or the result of social
conditioning.
Other writers take a more enlightened approach. Katz
offers a refreshing antidote to this approach of categorizing
all sexual behavior of retardates as pathological. He states:
8
As far as we know, the sexual needs of the retarded
adult are essentially the same as those of normal
persons of the same age and socioeconomic background.
The only exceptions appear to be those profoundly or
severely retarded adults whose sexual behavior does
not go beyond the level of a yound child There is
no basis in fact for the wildly held belief that re-
tarded adults have abnormal sexual drives and have
little control of their sexual impulse.
Katz takes the same down-to-earth, unhysterical approach
to the question of whether retardates should marry.
10
9
He points out:
Like normal people, retarded adults may fall in
love. Sometimes the love is mutual and realis-
tic and can lead to a happy marriage. Sometimes
the object of affection is unattainable because
of differences in mental ability and other qua-
lities. Parents must accept the fact that sex-
ual love is possible.
At this point, I want to take up the question of marriage
patterns of the mentally retarded. For, despite all those
who take the stance that retardates should never marry,
they do so nonetheless. One team of sociologists studied
a sample of 1450 retardates, of whom only about 115 had
ever been institutionalized. They found 750 of them ---
or 56% -- had been married.
10
This is low compared to
the 80% of the general population which marries at least
once; yet it does expose the myth that retardates do not
marry in significant proportions.
Despite the fact that marriage among retardates is a
statistically significant phenomenon, fewer than a handful
of researchers have chosen to study it. One exception is
a research project undertaken by Robert Edgerton and re-
ported in The Cloak of Competence. 11 As an anthropologist,
Edgerton approaches his sample of adult retardates who
were recently discharged from a state institution as a
social and cultural phenomenon. He points out that all
cultures provide a set of values to its members which are
used to give life its meaning. Edgerton's method consists
of determining the central and consistent elements in the
life of these retarded adults. In doing so, one of the
activities he isolates for study is marriage and sexuality.
He begins by stating very matter-of-factly that the
experiences of these retarded persons with sex and marriage
are varied, 12 but for the most part, they are quite conven-
tional.
However, sexuality is an area of great concern
to the adult retardate who has been in an institution. This
11
is largely due to the fact that often it was a sexual in-
cident which caused him to be hospitalized. He states:
13
Sex remains potentially a highly troublesome
matter for these people after discharge. For
example, improperly managed sexual desires can
lead to prostitution, promiscuity, child moles-
tation, rape or venereal infection, and it can
easily produce all manner of interpersonal con-
flict. Obviously then, skill in the management
of sexual conduct must be developed if the ex-
patient is to avoid serious difficulties.
Despite these fears, marriage was perhaps the most highly
cherished goal of the retardates in Edgerton's sample. This
was true not only for the reasons motivating people in the
general population to marry, but because it furthermore dra-
matized their newly won status as free members of the world
outside the institution. It constituted a form of prestige
that counteracted the stigma of mental retardation, Edgerton
asserts.
Among his sample (which was quite small), Edgerton found
six patterns of living. First, there were men who remained
single. Within this category were males who simply enjoyed
being bachelors and dating a variety of women, as well as
men who considered themselves too inept with women and too
obsessed with sexual fantasies to risk marriage. Second, there
were single women who were generally afraid of sex, and who were
fleeing from relationships with men. Third were those who
were either divorced or separated. Those in this category
tended to be currently conducting themselves in what could
be termed a promiscuous manner. The fourth category was
composed of those former patients who married each other
upon release. Fifth were the men who married "normal"
women. This, however, is an extremely rare event. And
last, and the largest category, were the women who marry
"normal" men. Often, the man is substantially older than
the woman (an average of 17 years) and has been married
previously. In some instances, he is seeking a woman who
will be dependent and submissive -- traits his former wife
12
did not possess. Whatever the motivation behind the re-
lationship, Edgerton asserts that this is the pattern that
tends to produce the greatest degree of marital success.
Parenthood, too, is regarded as a meaningful status
to achieve, Edgerton reports. Unfortunately, he was un-
able to study this phenomenon because the hospital from
which his sample came had a routine practice of steriliz-
ing all patients -- another example of the primitive ap-
proach taken towards the sexuality of the retardate. Ed-
gerton terms this sterilization process, which was a pre-
condition to discharge, "an ineradicable mark of their
institutional past a permanent source of self doubt
about their mental status. 14 One serious side effect
of this policy was that it prevented many women who had
left the hospital and wanted to marry a normal man and
"pass for normal" themselves from doing so because they
were afraid the man would want children.
Investigations of marriages have shown variable re-
sults both in the United States and abroad so that gen-
eralizations are difficult to make. If we use the divorce
rate as a yardstick of unsuccessful marriages, the rate
for the retarded is no higher than for the general popu-
lation. Obviously, there have been and will be problems
in these marriages, with added stress when a baby is born
soon after. Despite difficulties in adjustment, those who
marry prefer this state.
Studies of parenthood and child rearing practices
among retarded persons also show equivocal results, mainly
because the variables were not clearly established, samples
were not representative and comparisons were not made to
"normal" parents. In the study previously cited, 57% of
the married couples produced a child, an average of 2.09
per family. About 15% of these children were considered
retarded. Whether the retardation in children of dull
parents is largely due to the adverse environment in which
13
they have been reared or due to genetic factors, retarded
parents do not fare well socially and economically. Main-
ly because of this, they tend to provide an unstimulating
environment in which to rear children.
As parents, many retarded partners will need community
support and services. Even as married couples without
children, many will need more counseling than they are
getting now.
From surveys I have conducted with retarded adoles-
cents and young adults, interest in heterosexual contact,
particularly among the older subjects, was evident. Al-
though most were satisfied with their own sex, their self-
concept interfered with peer activities and relationships.
They felt they were unattractive to, and not well liked by,
the opposite sex. It is interesting to note that the high-
er the functioning intelligence, the more critical the self-
appraisal. Most felt that they were not permitted much lee-
way or independent action such as keeping later hours and
traveling independently for social activities.
Most said they had friends of both sexes but with fur-
ther questioning these contacts occurred primarily in the
classroom or the working situation. Lack of peer contacts
and experiences may be one of the factors contributary to
their lack of sex information. They are unfamiliar with
conventional terminology such as "sexual intercourse", and
most often have a vague understanding and are misinformed
about marital relationships, reproduction, and birth con-
trol. The responses given to the questions to elicit this
information were the kinds usually given by young children,
i.e. babies come from hospitals. Male-female differences
were often described in superficial terms such as clothes,
hair, or appearance; few gave anatomical differences.
Almost all denied any masturbatory activity and said it
was "bad" - a few replying that it would turn you into a
"faggot". Interest in marriage was high as well as having
14
children. The brighter subjects tended to emphasize
abilities and personality factors as desirable charac-
teristics in a mate; the younger and more retarded,
Some implications to be drawn from these surveys
include the following:
1. The attitudes and knowledge of retarded
persons about sex are intimately related
to personality development.
2. The attitudes toward sex on the part of
normal adults, in this instance, parents
of retarded adolescents and young adults
seem to be a reflection of the attitudes
of normal society toward sex. It is
characterized by fears that the retarded
will propagate and by anxiety about the
possibility of sexual misbehavior. These
reactions in turn set in motion the re-
tarded's anxiety and negative attitudes
which interfere with optimal functioning.
It may be that direct preventive measures
(i.e. contraceptives, hormone injection)
even though not a substitute for effec-
tive supervision and education, may serve
to reduce anxiety and allow parents and
professionals to feel more tolerant and
accepting. It may further enable parents
to concentrate more effectively on other
aspects of the retardates' development.
The need for professional counseling and guidance is
apparent. That sex education for the retarded as well as
their parents is a must cannot be over emphasized educating
them that what they feel is normal, not bad, and can be util-
ized in constructive ways. Sex education can also aid in the
development of a wholesome personality, including overcoming
self-rejection that often seems built into the retardate's
personality.
The retarded have been discussed as if they represent a
unitary condition. In reality, each is an individual func-
tioning at his own level of understanding and accomplishment,
from the totally helpless one to the individual who is "passing"
15
for normal -- both under the same rubric of mental re-
tardation. Any education program dealing with sexuality
must take these differences into consideration.
In this age of the pill, we must come to terms with
outmoded and often unfair traditions in attitudes and
practices toward retarded people. The striking changes
that we are witnessing in marriage and the sanctity of
the family must be extended to them as well, for intel-
lectual retardation is just one of many possible reasons
for personal incompetence within the areas of family life
and child-rearing.
From the limited information we have, the sexual needs
of most retarded persons are essentially the same as their
normal peers. Parents, professionals, and society must ac-
cept the fact that sexual love, marriage and, in some in-
stances, parenthood are possible.
References
1. Robert Edgerton, The Cloak of Competence (Berkeley:
University of California Press, 1967), 3.
2. Helen Whipple, Making Citizens of the Mentally Limited
(Bloomington: Public School Publishing Company,
1927), ; 182.
3. Whipple, .Cit., 183.
4. Edward Sandtner, "Sexual Expectations of the Mentally
Retarded, " Search for Self, Conference Proceedings,
(April, 1971).
5. Joan Ell, "Sex and the Retarded," Newsletter of the
American Association on Mental Deficiency, (1972), 11.
6. Ell, Op. Cit., 12.
7. Max Hunt and Robert Gibby, The Mentally Retarded Child
(Boston: Allyn and Bacon, Inc., 1956), 223.
8. Elias Katz, The Retarded Adult at Home (Seattle: Special
Child Public, Inc., 1970), 73.
16
9. Ibid, 76.
10. Elizabeth Reed and Sheldon Reed, Mental Retardation: A
Family Study (Philadelphia: Saunders Inc., 1965).
11. Robert Edgerton, The Cloak of Competence (Berkeley:
University of California Press, 1967), 112.
12. Ibid, 112.
13. Ibid, 111.
14. Edgerton, Op.Cit., 155.
&
17
THE REPRODUCTIVE CAPACITY OF THE MENTALLY RETARDED
James Orr
I must confess that not too many years ago when I first
considered sexuality of the mentally retarded, I thought that
a person who was slow mentally would be equally slow sexually.
As a general statement this is not true and our purpose today
is to help formulate our attitudes towards the sexuality of
the mentally retarded. We are asking them to restrain them-
selves when we ourselves have problems of restraint. We
first must face the fact that we have similar problems but
we, the so-called normals, have stronger inhibitions and moti-
vations for acceptable behavior.
New York State has initiated a humane and progressive
policy about the mentally retarded. When possible, the in-
stitutionalized mentally retarded patient is released to
hostel or home care. Sheltered workshops are established
to provide some meaning to the lives of the released patients.
With the release and its subsequent heterosexual contacts,
problems have arisen. How much sexual activity is permissible,
and how much right do we have to decide this for the individuals
involved? It is easy to say they should not be interested in
sexual experiences, but this is a denial of the actual situation.
The mentally retarded individual is interested in sex and, un-
fortunately, has less ability to cope with it in a socially
acceptable manner.
Mental Retardation Defined
The question arises as to what are the reproductive capa-
bilities of a mentally retarded individual. To begin to answer
this we have to first define what we mean by mental retardation.
There is no simple single answer.
James Orr, M.D., is Medical Projects Director for Planned
Parenthood of Northern New York. Dr. Orr's interest in the
mentally retarded has led him into investigating genetic re-
sults and the reproductive capabilities of the moderately
and the severely retarded individual. He is currently co-
producing a filmstrip illustrating rious contrace, tive
techniques for use with the mentally retarded.
18
The frequently used I.Q., or intelligence quotient, has
serious drawbacks; but it can serve as a guide. Many of the
moderately retarded will not show up in society until they
begin school. This group could be considered scholastically
retarded.
After their school years they may be able to fit into
society and be financially self-supporting. This is probably
more apt to happen in the rural areas where job competition
and requirements are less demanding. These moderately re-
tarded individuals are usually attracted to other retarded
individuals with the same degree of mental deficiency. Their
reproductive abilities are generally normal, but their ability
to cope with the complications of rearing the children are
poor. The genetic results of a marriage between two moderately
retarded individuals is also poor. Most offspring will have as
low (or lower) I.Q.'s than the parents.
When we consider the more severely retarded, we discover
a rough correlation of the I.Q. and reproductive abilities.
The lower the I.Q., the less likely the ability to reproduce.
Again we have to qualify our statement. There are types of
mental retardation that appear uniform but when examined
closely, are found to be otherwise. An example of this is
Downs Syndrome or Mongolism. All mongoloids look similar,
but genetically, we know there are several types, and each
type has its own I.Q. range and its own reproductive abilities.
We also have to remember that 85 per cent of the mentally
retarded are undiagnosed as to what caused their condition. 1
Our lack of knowledge as to causation is reflected in our lack
of knowledge as to their reproductive capacity.
Genetic Control: Some Considerations and Implications
Through some of the more advanced techniques of the genetic
science, actual chromosome abnormalities can be observed, and the
chance of the genetic characteristic being passed to the next
19
generation can be estimated. A culture of one type of
white blood cell, or scrapings from the inside of the
mouth, are used. The techniques are not simple and can
be performed only at medical centers with special equip-
ment and trained personnel.
In addition to mental retardation, many other con-
ditions such as a tendency for some types of cancer, high
blood pressure, and diabetes are now known to have a gene-
tic foundation. It will be possible within a few years to
predict the probability of a known genetic condition being
passed on to the next generation. The ethical question
then arises as to whether personal freedom can be tolerated
by a society that will be forced to support a child through-
out its life. This is a most difficult question to answer,
but it will have to be faced.
The concept of a genetic pool that is gradually being
contaminated with an increasing number of defective genes
is a reality. With the mentally retarded we can say with
certainty that their chances of having a defective child
is high. But, we cannot say with the same certainty that
they should not be allowed to have that child.
If we take an authoritative stand on reproduction of
the mentally retarded, by denying them parenthood, what is
to prevent us from then taking the same stand on other in-
heirited conditions that produce a less-than-ideal child
such as diabetes? But before we attempt to define such an
"ideal", keep in mind that it has been estimated by geneti-
cists that one hundred years from now one in ten births
will be defective as a result of the gradual accumulation
of defective genes in our society 2
When it comes to contraception and the mentally re-
tarded, the legal doctrine of informed consent has to be
considered. Essentially, informed consent implies that the
consenter has full knowledge of the procedure, its risks,
20
complications, and chance of failure. With the moderately
retarded, this presents no problem. But, with the more dis-
advantaged retarded who are still sexually active and still
are capable of reproducing, difficulties arise.
Whether a parent can legally consent to sterilization
of a mentally retarded minor is still undecided in the law
courts. Temporary methods of contraception such as the pill
or the intra-uterine device may not be effective with the
retarded, and their consent may not fulfill the definition
of informed consent. All methods of contraception require
some degree of medical supervision. With the retarded, this
supervision has to be more frequent and more thorough.
Counseling and Contraception: A Checklist of Concerns
1. Contraception for the mentally retarded requires
more individualized attention than the usual
patient. Counseling and instruction should be
on a one-to-one basis.
2. Sex manual illustrations used should show the
entire body.
3. Such sexual illustrations must not be overly
detailed.
4. - The difficulty of remembering a daily pill is
a factor.
5. The intra-uterine device is effective, but the
normal complications of cramping or excessive
bleeding require careful patient preparation.
(The injectable progesterones would be an ex-
cellent method but at the present time they
are restricted by the Federal Drug Adminis-
tration as an experimental method)
6. Sterilization by a tubal ligation or a vasec-
tomy in the male are permanent methods of con-
traception, but the previously mentioned in-
formed consent becomes a problem.
21
Some Final Thoughts
In summary, what I have tried to convey is a complicated
issue with more questions than answers. First, we know that
while the more profoundly retarded are less likely to be able
to reproduce, the majority of retarded individuals have the
same sexuality and reproductive capacities as the normal per-
son.
Second, each case of retardation must be diagnosed as to
its causation before we can predict the consequences of repro-
duction. In many cases this diagnosis is not possible by
techniques available today.
Finally, the medical profession by prolonging the life
of people with metabolic diseases such as diabetes, is con-
tributing to the gradual deterioration of the genetic pool.
References
1. Stanley W. Wright, and Robert S. Sparkes, "Genetic Counse-
ling in Mental Retardation. : Pediatric Clinics of
North America, XII: No. 4 (Saunders Press).
2. Ibid
22
VERMONT'S PLAN FOR SPECIAL EDUCATION IN THE REGULAR CLASSROOM
Adler J. Muller
Beginning with the basic assumption that every child
is entitled to an education at public expense at least through
high school, the question is not, "Whom shall we educate", but
rather, "What is the most appropriate method of instructing
each student according to his needs?"
Recent statistics revealed that about 15% of the handi-
capped learners in Vermont were being taught in special educa-
tion classes. These are usually in out-of-town schools where
the students must reside or be transported long distances.
About 8500 with learning and behavior disorders were not re-
ceiving special services at all. Even if the state had the
financial power to construct, supply, and staff the necessary
special education classrooms in every school district, which
it has not, this was seen as socially undesirable except in
cases where the nature of the handicap prevents the child
from interacting with his peers. The alternative to this
problem seemed obvious. The classroom teacher needed to
learn how to cope with the tremendously wide range of achieve-
ment levels and social behaviors he found among children as-
signed to him.
The Consulting Teacher Program of the University of Ver-
mont was created with federal and state funds for this pur-
pose. A few classroom teachers are selected each year to
participate in a rigorous two year, 60 hour, course of studies
leading to a Master's Degree in Special Education. Essentially,
they become specialists in behavior theory and applied behavior
disorders. You will see in the film¹, consulting teachers in
Adler J. Muller is principal of the Hinesburg Elementary
School, Hinesburg, Vermont. He has shown an avid interest
in the education of the mentally retarded, and Vermont':
Plan for Special Education typifies his concern for meeting
the needs of the mentally retarded in the classroom.
23
the following three settings:
1. B. J. Lates involving a classroom teacher
and parent in prescribing a learning pack-
age for an elementary school boy.
2. Harriet Klann delivering reading instruction
to extremely deficient upper grade students
through the use of trained high school aides.
3. Susan Hasazi and Mary Pierce working with a
whole elementary school staff to improve the
academic and social behavior skills of at
least 40% of the school population.
You will notice, too, the power of positive reinforce-
ment techniques scientifically applied.
I can testify as the principal of a school using the
services of the Consulting Teachers for two years, that the
emotional climate of each classroom has improved dramati-
cally. Positive reinforcement techniques used by the teach-
ers have produced more skillful and happier students.
As the students' rates of learning increase, they will have
a greater number of options open to them, enabling them to
enjoy more "Freedom and Dignity" than they had before.
Film
1. The Consulting Teacher Program, produced by: Vermont ETV
and the Department of Special Education, University of
Vermont, Burlington, Vermont.
24
TEACHER TRAINING, MENTAL RETARDATION, AND THE PLAGUE
James F. Winschel
There is a danger in leaving the cloister of one's aca-
demic community to speak before a gathering of peers and col-
leagues - peers and colleagues, but strangers all the same.
The danger lies in the almost overwhelming inclination to be
what one is not: to be witty when one is dull; to be wise
when one is merely foolish; and to appear to attack boldly
the frontiers of theory and practice when in fact one walks
haltingly and afraid, enveloped in ignorance and haunted by
the spectre of failure.
What can I say about mental retardation and teacher
training of which some in this audience are not already
aware? The recitation of statistics would bore you - and
me; the summarizing of research would only add to your dis-
traction.
As a last resort I might yet fall back on the time hon-
ored exposition of personal success. But truth rather than
modesty stays my tongue. Failure seems more the hallmark of
my career - and if today I am to instruct, the lesson is to
be found as much in the inadequacies of that career as in its
modest victories.
Let me raise the questions boldly! Have teachers in
training been enthralled by the brilliance of my lectures?
I think not. Do teachers in training revel in the mystique
of my clinical observations? I think not. Have colleagues
envied the wisdom of my philosophy? I think not. Are the
James F. Winschel, Ed.D., is professor of Special Education,
Syracuse University, Syracuse, New York. Dr. Winschel worked
as both a public school teacher and teacher trainer in mental
retardation. His publications are in the areas of disadvant-
aged children, mental retardation, and learning disabilities -
all of which constitute his continuing interests.
25
mentally retarded better off for the teachers I have trained?
I think yes; I think no. I think I do not know - indeed, I
think I am afraid to know.
Yesterday I thought I knew just what it was I wanted to
do and wanted to say today. I would ferret out the myths that
permeate our professional interest in teacher training, lay
them before you for all to see and then vigorously and publi-
cly I would stamp upon them until either they or I lay ex-
hausted before you.
But the more I examined this strategy, the more it be-
came apparent that I was a part of those myths - more than
that - I personified the very myths I sought to excoriate.
And if punishment were to be meted out, it was I who was
guilty - and I who must bear the whip.
My remarks today, then, are not so much an indictment
of teacher training as they are a confession of sin - and
my purpose is not so much to destroy the myths which sur-
round me as to unmask the falsehoods upon which a profes-
sional career stands shaky and uncertain. On reflection,
I am aware that what I have to say is more a confession
than a speech, is more emotional than scholarly, is more
truthful than wise.
I started to-teach retarded children 22 years ago and
I could tell you a heart warming story of how I began and
of how my interest in this work developed, but I won't. I
won't because it's all a lie - a lie that I have repeated
to hundreds of teachers in training in the last ten years.
In fact, I decided to teach retarded children because
I so lacked confidence in myself and was so intimidated by
the prospect of teaching bright children that I sought a
haven in those who were not so bright. And I continued in
my profession as much from the need to feel superior as
from the desire to help my fellow man.
26
Is this the substance of a teacher trainer? Why, I
wonder, has it taken me so long to voice the truth?
In similar vein, some time ago, I engaged in a re-
search project with a person whose publications, if not
legion, are at least numerous. Oh, the fact is my role
(in spite of a professorship) was that of apprentice, you
might say.
During the course of this investigation it became
clear that my associate had few research skills - and
yet fewer scruples in the manufacture of data. Yet,
even now, certain decisions about the welfare of handi-
capped children are being made on the basis of this per-
son's past research - and I find myself sitting uncomfor-
tably upon additional data which, when cleverly fiction-
alized, will be deemed worthy of publication.
Why have I not exposed this culprit? Why am I afraid?
Is this the substance of a teacher trainer? And why has it
taken me so long to voice the truth?
At some point during the academic year, students will
raise with me the question of sex education with the men-
tally retarded. It is a question to which I invariably re-
ply with confidence. My answer generally goes something
like this:
We know that sex has been a joy and a problem ever since
Adam ate the apple. Few of us, I expect, quarrel with the
general goal of increasing the joy and eliminating the prob-
lem. While some may disagree, I am of the opinion that the
goal is as appropriate for the mentally retarded as for any
other group. In recent years a growing chorus of voices has
suggested that the goal..- joy and elimination of the problems -
might better be achieved through something called "sex edu-
cation, "
But what of this term that has pitted parent against
parent, child against teacher, and has thrown normally sen-
sible school board members into a chaos of rash words and
27
foolish deeds. Sex education is an elusive term, more
complex than the biology of reproduction, more profound
than "how to behave on a date". In its broadest meaning,
sex education must surely be concerned with the conflict
between the natural sexual proclivities of the individual
and the mores of society - a society which is itself ac-
cused by youth of a callous disregard for human life,
welfare, or dignity. Nevertheless, many young people -
retarded children not less than others - need help in
handling what one suspects is the inevitable conflict be-
tween nature and mores.
Even if these conflicts could be largely resolved,
some retarded children and adults will have sexual problems
because of the use or misuse of sex. Thank heavens that
some manifestations of sex remain a sufficiently spontaneous
phenomena that knowledge will never be completely equated
with wisdom. Nor should the retarded be denied their in-
alienable rights to sexual expression simply on the assump-
tion that they may prove incompetent of the responsibility.
I ask who should be responsible for sex education. The
parent? Physician? Minister? Teacher? TEACHERS? God for-
bid that they should shoulder the full responsibility. No -
the curriculum - resolving of conflict between nature and
mores - does not lend itself to the splendid isolation of
the classroom. In truth it is a laboratory course and its
only school house is life itself. And so I am convinced
that we are all teachers, and all of us are responsible. We
can't assign that responsibility to others, nor can we pre-
tend to assume another's burden. But there is, in our con-
tinued concern, a hope, a promise that we can, each in his
turn, help others to do their job with honesty and courage.
I said that this discourse on sex education is one that
I render with confidence. But in fact, that is not true.
For I am so torn by personal conflict and remorse, by anxiety
and frustration, by personal questions of morality and pru-
dence, that my opinions are held in doubt and voiced in
28
ignorance.
Is this the substance of a teacher trainer? Why, I
wonder, do I not voice the truth?
My youngest daughter was something special to her
father almost from the time she was born. She walked
early and talked early and early she captured her father's
heart.
The massive and prolonged convulsive seizure she suf-
fered at 15 months of age shook my confidence in the justice
of nature and the wisdom of God - but I continued to hope,
and the enemy within lay quiescent - and a little girl grew
with vigor in body and mind.
And then at 5½½ years another massive seizure struck
her down and left her for a time paralyzed - and for the
years since she has manifested many of those characteris-
tics common to brain injured children - how colossally ig-
norant nature can be!
Then for 61/2 years - nothing - until a few years ago
the beast struck again, and again, and again - and is now
at best kept at bay through the careful administration of
drugs - waiting as it were to pounce upon my prize.
I hate this thing! I do not accept; I will not ac-
cept; I cannot accept.
What a hypocrite I have been these years in counseling
parents of retarded children in the art and necessity of ac-
ceptance - and I wonder if I haven't deceived numberless
teachers in training who have sought to understand the coun-
seling process. I have allowed a myth to grow around me. I
have appeared strong when I am weak, and I have extolled the
virtues of acceptance when I do not accept.
Is this the substance of a teacher trainer? And why, I
ask, has it taken me so long to voice the truth?
But the final myth about which I speak is more serious
than these for it is a pretension upon which my very profes-
sional life may hang - a pretension that I. can no longer abide.
29
Love - no, not love - but the absence of love is at
the heart of this deception.
Those I teach and those I guide, those with whom I
converse casually and those to whom I speak formally have
accepted without question my commitment, my concern, my
love, if you will, for mentally retarded children. Twenty-
two years of work in the field are proof enough, they seem
to say. But I am less sure than once I was. I think per-
haps I have come to love mental retardation more and re-
tarded children less.
Mental retardation has provided me with a comfortable
office and a reasonably comfortable salary. Mentally re-
tarded children are sometimes incontinent and sometimes
they look disturbingly different.
Mental retardation has brought me associations with
bright, witty, sophisticated people; the mentally retarded,
in comparison, are ever so dull.
Mental retardation sends me to such wonderful meetings
and conventions where I have such a superb time seeing new
sights, renewing old acquaintances, and making new friends.
And where, unless my faith is quickly restored, I shall play
the professional meeting charade without purpose or meaning;
the mentally retarded, on the other hand, whether in homes,
or classrooms, or institutions only haunt my dreams - God, I
wish they'd go away.
That is what I think; that is what I feel.
Why has it taken me so long to voice the truth?
Well, there you are. The myth of one teacher trainer
lies exposed for all to see - to see what happens to a man
when he forgets # not how to care - but what to care about-
not how to speak, but how to speak the truth.
Today I have tried briefly but publicly to face myself
in hopes that I might inspire others to do the same - and in
laying bare the hypocrisy that infests us, we might yet be
worthy of our calling.
30
It is not my intention to tar this audience with the
brush I use upon myself - and yet I wonder --
I wonder if there are any among you who dislike child-
ren, and yet are trapped in teaching or in preparing others
to teach because you can't ever face the truth.
I wonder if there are any among you who utilize work
with the mentally retarded as a vantage point in the exploi-
tation of human beings.
But more than these, I wonder if there are any among
you who seek only to be what you ought to be - afraid to
question what you are - who seek only to be what you should
be, forever neglectful of what you could be.
What I really wonder is whether we are not all caught
up in a plague of mediocrity and self-satisfaction. How
else can one explain the self-praise in which we as a pro-
fession bask? And in our delirium we seem unable to dis-
cern whether we are the carriers of that plague or merely
its victims.
In one memorable scene from Albert Camus' novel, The
Plague, the young journalist, Raymond Rambert, and a town
physician, Dr. Bernard Rieux, engage in a dialogue on the
nature of plague and the struggle to contain it. I quote:
"So you haven't understood yet?" Rambert shrugs
shoulders almost scornfully.
"Understood what?"
"The plague."
"Ah!" Rieux exclaimed.
"No, you haven't understood that it means ex-
actly that - the same thing over and over and
over again." "
The young journalist, by way of justifying his plan to
escape quarantine, then goes on to decry the sense of heroics
which seemed to characterize the struggle - and the lost capa-
city to love which seemed to characterize the townfolk. Sud-
denly appearing very tired, Dr. Rieux rose to answer:
31
"You're right, Rambert, quite right and
for nothing in the world would I try to dis-
suade you from what you're going to do; it
seems to me absolutely right and proper. How-
ever, there's one thing I must tell you:
there's no question of heroism in all this.
It's a matter of common decency. That's an
idea which may make some people smile, but
the only means of fighting a plague is -
common decency."
"What do you mean by "common decency' ?"
Rambert's tone was grave.
"I don't know what it means for other
people, But in my case I know that it con-
sists in doing my job."
"Your job! I only wish I were sure
what my job is! Maybe I'm all wrong in
putting love first."
Rieux looked him in the eyes. "No,"
he said vehemently, "you are not wrong.
Now as one who has experienced the plague - for what
else do you call the hypocrisy and self-doubt that has
stalked my career - I would have our young teachers, above
all else, learn these two lessons:
First, remember that it is only a question of time be-
fore you catch the plague. For some it may take the form of
petty dishonesties in relations with children or colleagues;
for others, it is the conservation of energies which should
rightly be expended in the service of children; and for still
others, it is the faint mockery and subtle cynicism with which
the experienced teacher greets the idealism of the novice. God
forbid, in its most virulent stage the plague manifests itself
in a dull repetitiveness in teaching which subjugates the spirit,
constricts the soul, and limits the intellect - of teacher and
student alike.
And I would tell these students and teachers that the anti-
dote for the plague, when it strikes, lies in an honesty with
self and a steadfastness to their calling - for what we do is a
noble work and "common decency" requires that we go on. And in
32
going on we may yet discover about ourselves (as Camus has
said) that in time of pestilence "there are more things to
admire in men than to despise."
And, secondly, I. would tell students that Rambert was
right when he placed love above all.
I say love because I am disenchanted with research and
technology. I say love because manpower and money alone
have succeeded so little in ministering to the ills of edu-
cation. Love, because without it special programs of train-
ing are often dedicated to the self-interests of their pro-
moters; love, because in the end it is the only quality I
know that can bind student to teacher, ignorant to educated,
and man to man.
We have spoken today not only of the retarded, but of
ourselves. And as I grapple with the seemingly unfathomable
determinants of human behavior, I am convinced that in the
decade ahead we must build a profession in which we will not
understand the retarded less, but rather ourselves more. The
philosophy and technology of the future will set the retarded
free, I think, because they will be applied by teachers who
understand themselves - teachers unafraid of the plague -
teachers unafraid to love.
33
WORKSHOP HIGHLIGHTS
The workshops were designed in such a manner that each
participant attended his choice of two, one-hour informative
sessions. The sessions dealt specifically with such concerns
of the mentally retarded as: services available, family
planning, and law enforcement. Participants were encouraged
to raise questions and to exchange ideas with other partici-
pants.
In some instances, the structured programs were replaced
by informal discussions in order that specific needs of the
workshop participants might be met.
If
SESSION A
The Mentally Retarded Citizen and the Law Enforcement Process
Thomas Coughlin
Executive Director
Jefferson County Association for Retarded Children
While a subject such as this might seem out of place at
a conference on sexuality and the retarded, impetus for such
a discussion is a direct result of this conference on sexuality.
Last year, at the conference on Sexuality and the Mentally
Retarded, I came prepared to speak of the legal aspects of birth
control and the retarded. The topic was well received, but most
of my conversation, after the meeting, tended to focus not around
birth control but rather around the general topic of the mentally
retarded and the law. We were most fortunate to have a good num-
ber of New York State troopers at the meeting and during the dis-
cussion periods, their concern relating to general problems with
the retarded came to the forefront and forced me to do some seri-
ous thinking on the subject.
In October, 1973, I invited two members of the New York State
Police, Lieutenant G. W. Brown, and Senior Investigator C. C.
Donohue to accompany me to a meeting in St. Louis, Missouri, which
was going to address itself to the topic we discussed at Potsdam
with regard to the mentally
34
retarded and the law enforcement process. The foregoing,
even though it's history, is important in order to detail
the evolution of a very interesting new program.
During the past year, the three of us have developed
a four-hour training program for police personnel. The
course will be given for the first time in December, 1973,
at the New York State Police Academy. We hope we have
developed a realistic approach to a very difficult problem:
How does a policeman deal with a mentally retarded person
with whom he comes in contact in the course of his official
duties?
The program explains the most prevelant forms of men-
tal retardation and the types of social behavior that can
be expected from each form. There is some time spent in
suggesting different approaches to specific etiological
types of mental retardation. We feel the most novel as-
aspect of the course is the suggested use of community al-
ternatives for the retarded offender.
We make very clear that it is the policeman's decision
whether to arrest or not to arrest, especially for violations
of a minor nature, and we urge not a disregard of the law
by the officers, but rather an honest appraisal of the bene-
fit to the offender commensurate with each alternative.
SESSION B
Community Participation
Maryclaire Sherwin
Program Director
Franklin County PPNNY
The many different avenues that the four counties have
chosen to continue the work of the Institute were brought out
during the workshop on Community Participation. They are as
35
follows:
FRANKLIN COUNTY
Maryclaire Sherwin spoke for Franklin County's Steering
Committee. This group had been working on an in-service
training program to acquaint the people of the helping
professions with the problems and needs connected with
the sexuality of the mentally retarded. The program is
scheduled to be implemented at Sunmount State School on
October 29, 1973. It is hoped that with this as a pilot
program, this same service might be extended to agencies
and special groups all over the county.
JEFFERSON COUNTY
Linda Sinclair, co-chairman, reported that the Jefferson
County Steering Committee had brought together many com-
munity agencies to exchange ideas and to develop future
plans for the mentally retarded in that county. One
committee member, working with school psychologists, had
started work on a program with the school system. Robert
Simmons, co-chairman, spoke of the group meeting conducted
by the Jefferson County ARC for hostel parents and family
caretakers. These meetings included material on sex edu-
cation and sexuality. It was felt that as a result of
these meetings, the whole staff was more aware of the
sexual problems and needs of the retarded and was now
better prepared to deal with them.
Mrs. Sinclair further advised that anonymous case
studies had been compiled by various committee members
representing social workers, psychologists, planned
parenthood workers, and rehabilitation counselors. The
completed studies, it was felt, would be useful for in-
service training sessions by various agencies.
LEWIS COUNTY
Karen Duflo, Chairman of the Lewis County Steering Commit-
tee, advised that the committee's project would concentrate
on the retarded as a whole rather than to single out the
36
sexuality aspect. In an attempt to arouse interest in the
mentally retarded, the following three slogans, contributed
by committee member, Reverend Ladd Harris, would be aired on
radio and television:
1. People Need People. The Mentally Retarded are People.
2. The Mentally Retarded are Like You--Human.
3. Today a Mentally Retarded Child is Being Born. It
Could Belong to You.
A subcommittee consisting of Doug Kraai, Richard Reister,
Karen Duflo, and Reverend Harris, also produced a slide presenta-
tion to educate the general public on services available for
the mentally retarded within Lewis County.
St. Lawrence County
Relda Johnson, Chairman, advised that the St. Lawrence
committee had authorized Karl Klein and Chuck Beeler, Rehabili-
tation Counselors at Seaway Rehabilitation Center in Hermon, New
York, to compile a slide presentation which would deal specifically
with the social mores of the mentally retarded. The slide presen-
tation is expected to be completed by January 15, 1974.
SESSION C
Birth Control and the Mentally Retarded
Janet B. Summerville, Executive Director, PPNNY
Since many at the September, 1972, workshop requested qui-
dance in specific, individual situations involving sexuality and/
or birth control, this workshop dealt with four cases. It was felt
that these cases might help others working in this area.
Basic to the workshop was the assumption that the educable,
mentally retarded had the need to express their sexuality and that
they had the right to good birth control information.
37
Inherent to this right of retarded individuals are:
a. The necessity for good referrals
b. The necessity for sensitive education and
clinic service
C. The necessity for consistent follow-up
Two counselors from the Jefferson County Association
for Retarded Children reported on their counseling sessions
with two clients. Miss A was 19 and was very frightened
about sex. Her background included many siblings and a
setting not approving of birth control. Many sessions of
counseling allowed the girl to develop a healthy, informed
background for sexual responsibility. She was eventually
able to go to a local Planned Parenthood Clinic for more
specific education. The counselor felt that as these
anxieties diminished, the young lady definitely became bet-
ter adjusted.
Ms. B's presenting problem was emotional. Her diffi-
culty expressing her sexuality in a responsible way had re-
sulted in three miscarriages. Much of her lack of responsi-
bility was related to her lack of knowledge of birth control
methods and her tremendous need for support. Through contra-
ceptive education and intensive counseling around her sexual
expression and relationship building, Ms. B became more con-
fident in many areas of her life.
Mr. and Mrs. C discussed the personal difficulty of their
decision to help their daughter obtain a method of birth con-
trol. After much deliberation, they felt this was a proper
responsibility for them. Their daughter was going to be
working and living away from their home. They reported a
feeling of relief that their daughter was protected by the
pill, and on the basis of information learned at the work-
shop, they expressed a curiosity to explore some genetic
counseling for her.
An Outreach worker reported on many sessions with a
young woman who had been referred by an inner-school council
and by her father. These weekly get-togethers were health
38
and family oriented to fill a void in early health educa-
tion. Weeks of individual meetings were necessary before
the young woman had sufficient basic health understanding
of herself and what happened during an IUD insertion. These
careful, sensitive encounters have resulted in a healthier,
happier person and a re-evaluation of an adequate school
program.
A nurse and social worker in one Northern New York
County explained the need for good referrals. Certain
referrals from doctors have directed their outreach work-
ers to homes with filmstrips and educational programs. In
some cases relatives of the family have asked for informa-
tion and education to be presented at their homes. It was
pointed out that, particularly in the area of retardation,
the soundest possible referral is indicated.
It was shown that birth control can be effective for
some educable mentally retarded. The preferable birth
control methods for the mentally retarded are the IUD,
pills, tubal ligation, and vasectomies.
Another method, injectibles, now approved by the FDA,
will be excellent for some mentally retarded. Foam and
condoms require considerable motivation. To be effective,
they must be used by both partners for each act of inter-
course. This, of course, indicates a fairly low chance
for effectiveness. The diaphragm and the rhythm methods
appear to be too technical to be considered appropriate
for mentally retarded individuals.
SESSION D
Community Services for the Mentally Retarded
Rev. Wayne L. Pelkey
St. Lawrence Steering Committee Member
The workshop in which I participated elected to fore-
go the tape-film presentation and spend the time allotted in
39
general group discussion of the problematic areas concerning
the treatment of the sexuality of the mentally retarded. The
following topics were discussed:
Open display of masturbatory sexuality by the mentally
retarded was the first topic discussed. Some workshop members
felt it was their responsibility as institution workers to cur-
tail all such self-stimulated sexual behavior, whether expressed
in public or in privacy. Other group members felt this avenue
of sexuality entirely healthy and might be done in privacy.
They also saw their responsibility as being one of educating
the mentally retarded of the privacy of this form of sexuality
and the social norms antagonistic to such public display.
The second item of discussion was heterosexual behavior
between members of those housed in institutions. Many
(certain institutional leaders) felt that heterosexuality should
not be allowed in the treatment facilities, regardless of whether
the action was public or private.
One female institution leader believed that it was her
responsibility to the public (immediate relatives of the re-
tarded and the tax payers in general) to curtail all forms
of sexuality. It was also pointed out that there were no
private facilities in many institutions which would permit
display of sexuality in the aforementioned "individual pri-
vacy".
One group member stated that such sexual behavior was
against the morality of our society and that expressed in
the Bible. It was pointed out, however, that there was not
ONE morality expressed, consistent to the whole of the Old
and New Testament. The Bible as a unit arose out of and in
a cultural setting that was in flux and was conditioned by
the social climate of its time. Also, the application of
"biblical" basis to the problems and solutions was an in-
fringement upon the rights of those members and their fami-
lies who did not ascribe to the teachings of Christianity.
The question of "whose morality was to be accepted as the
society's morality" was also raised. It was apparent that
40
one "social morality" did not exist in the societv at large.
The third item discussed was the problems arising out
of heterosexuality. It was amusingly pointed out that the
mentally retarded in the institutions are in the shrubs,
bushes, and dark halls having sex whether we liked it or
not! One such result of sexual behavior was stated to be
problem pregnancies.
Among the solutions proposed were sexual abstention,
voluntary and involuntary sterilization, and education of
birth control methods for the mentally retarded.
41
SEXUALITY
and the
MENTALLY RETARDED
A Post-Institute
at
State University College
at Potsdam
Potsdam, New York
FRIDAY
June 22, 1973
Sponsored by
Office of Economic Opportunity
PROGRAM
Friday
June 22, 1973
9:00
to
Registration and Coffee
9:30
9:30
Welcome and Evaluation Orientation
to
Reverend William Cuthbert
9:45
Karl E. Thaller, Ph.D.
9:45
"Legal Aspects: Considerations in Abortion,
to
Contraception, and Sterilization"
10:00
Laurie Rockett, L.L.D.
10:00
"Psychological Aspects: Implications of the
to
Sex Revolution for the Mentally Retarded"
10:15
Murry Morgenstern, Ph.D.
10:15
to
Retarded "The Reproductive Capacity of the Mentally
10:30
James Orr, M.D.
10:30
"Contraception for the Mentally Retarded"
to
James Orr, M.D.
10:45
42
10:45
to
COFFEE INTERLUDE
11:00
11:00
to
Film, "Parent to Child about sex"
11:30
11:30
"Sexuality and the Mentally Retarded: The
to
Progress of Counties"
11:50
Panel: Relda Johnson, Douglas Kraai, Mary-
claire Sherwin, and Robert Simmons.
11:50
to
Questions for Panel Response
12:00
12:00
Lunch
to
"Human Policies and the Future for persons
1:30
with Special Needs"
James F. Winschel, ED.D.
1:30
INFORMATIVE SESSIONS
to
3:30
SESSION A, "Justice and the Mentallv Retarded"
Lieutenant G.W. Brown, Tom Coughlin,
Senior Investigator C.C. Donåhue
SESSION B, "Community Participation", Rev.
William Cuthbert, Father John Downs,
Doug Kraai, Maryclaire Sherwin
SESSION C, "Birth Control and the Mentally Retarded"
Janet B. Summerville, PPNNY, Mr. & Mrs.
Albert Morin, Jeff. Co. ARC, Relda
Johnson, Planned Parenthood St. Lawrence
County, Dorothy Clark, Planned Parenthood
Jeff. Co., Ann Davis, PPNNY, Cynthia
Ward, Sheri McCann-Jeff. Co. ARC
SESSION D, "Community Services for the Mentallv
Retarded" Edward Hassett, Karl Klein,
Paul Reichhart, Richard M. Reister.
3:30
to
Reports from Workshop Recorders
3:45
3:45
to
"Evaluation Report Summaries"
3:55
Karl E. Thaller, Ph.D
3:55
to
Closing Remarks
4:00
Sue Davis
43
CONFERENCE LEADERS
G. W. Brown, Lt., New York State Police Department
Dorothy Clark, out-reach worker, Jefferson County Planned
Parenthood of Northern New York, Inc.
Thomas Coughlin, Executive Director, Jefferson County
Association for Retarded Children
William Cuthbert, Rev., (Chairman) Sexuality and the
Mentally Retarded Steering Committee
Ann Davis, Director of Nursing, Planned Parenthood of
Northern New York
Sue Davis, Project Coordinator, Sexuality and the
Mentally Retarded
C. C. Donahue, Sr. Investigator, New York State Police
Department
John Downs, Rev., St. Francis Xavier Church, Redwood,
New York
Linda Dickerson, Director, Jefferson County Planned
Parenthood of Northern New York
Karen Duflo, Director, Lewis County Planned Parenthood
of Northern New York, Inc.
Edward Hassett, Rehabilitation Counselor, Jefferson
County Association for Retarded Children
Relda Johnson, Director, St. Lawrence County Planned
Parenthood of Northern New York, Inc.
Karl Klein, Rehabilitation Counselor, St. Lawrence
County Association for Retarded Children
Sheri McCann, Rehabilitation Counselor, Jefferson
County Association for Retarded Children
Murry Morgenstern, Ph.D., Mental Retardation Institute,
Valhalla, New York
44
Mr. & Mrs. Albert Morin, Parents, Jefferson County Association
for Retarded Children
James Orr, M.D., Medical Projects Director of Planned Parent-
hood of Northern New York, Inc.
Paul Reichhart, Assistant Director, Charles Bartlett Rehab-
ilitation Center, Malone, New York
Richard M. Reister, Social Worker, Lewis County Mental
Health Clinic, Lowville, New York
Laurie Rockett, L.L.D., Columbia Law School, New York,
New York
Maryclaire Sherwin, Director, Franklin County Planned
Parenthood of Northern New York
Robert Simmons, President, Jefferson County Association
for Retarded Children
Janet B. Summerville, Executive Director, Planned Parenthood
of Northern New York, INc.
Karl E. Thaller, Ph.D., State University College at Potsdam,
Potsdam, New York
Cynthia Ward, Rehabilitation Counselor, Jefferson County
Association for Retarded Children
James New F. York Winschel, Ed. P., Syracuse University, Syracuse,
REGISTRATION INFORMATION
Place: College Union, State University College at
Potsdam, New York
Date: Friday, June 22, 1973
In an attempt to reach the greatest number of interested
individuals, the conference is designed in such a manner that
REGISTRATION FEES will NOT BE NECESSARY. Coffee and lunch
will be provided for all participants. However, to insure that
participants may attend the two informative sessions of their
choice, it is imperative that the attached registration form
be completed and returned to Mrs. Sue Davis, State University
College at Potsdam, New York by Monday, June 11, 1973.
CONFERENCE BACKGROUND
This conference is designed to provide parents, para-
professionals, and other interested individuals with the
best information regarding the sexuality of the mentally
retarded. Noted personalities in the field of special education
mental retardation, psychology, law, and family planning will
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make presentations geared to answering specific questions
involving the sexuality of the mentally retarded.
The informative sessions scheduled for the afternoon
of June 22 will enlighten the participants on what has
happened in the community as a result of the September
Conference on SEXUALITY AND THE MENTALLY RETARDED.
COOPERATING AGENCIES
Association for Retarded Children (County Chapters)
Community Action Planning (O.E.O)
Department of Mental Hygiene
Department of Social Services
Planned Parenthood of Northern New York, Inc.
Office of Economic Opportunity
State University College at Potsdam, Office of Continuing
Education
RECORDERS
Thomas Coughlin, Director, Jefferson County Association for
Retarded Children
Wayne Pelkey, Reverend, St. Lawrence Steering Committee member.
Maryclaire Sherwin, Director, Franklin County Planned Parent-
hood of Northern New York, Inc.
Janet B. Summerville, Executive Director, Planned Parenthood
of Northern New York, Inc.
S
U.S