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British Columbia Association for the Mentally Retarded, Victoria, British Columbia, 1976

Your program committee has asked me to discuss this morning the topic "Human Rights -- Myth or Reality." Let me state right off my premise as pointedly as I can. There is no question that human rights for mentally retarded persons, young and old, are a reality, that they exist. That evidence is all around us. But there is also the reality that there are all too many people who keep on denying this reality, who call these human rights a myth, a fantasy, wishful thinking, and worse.

It is only fair to state that a number of people in this room, people who do care for and about retarded individuals, nevertheless hold this view and cannot accept the reality of human rights as it relates to the retarded person for whom they care.

Let me now hasten to add that to assert the reality of human rights is by no way saying that the implementation, the fulfillment of these rights, is an accomplished fact. These are indeed two different things, recognizing the reality of human rights for mentally retarded persons and then setting about implementing these rights on a day-to-day basis. The point that must be made forcefully is of course that we cannot possibly hope for any kind of implementation efforts from people who in the first place deny that such rights do exist, that mentally retarded individuals are endowed with the same human rights as the rest of us.

Next it must be stressed that there is a marked difference between human rights and legal rights. Legal rights are either derived from specific statutes or from basic pronouncements of the judiciary, the courts. Human rights cover much broader ground. They grow out of the human existence itself, may be formulated by philosophers or pronounced by some body such as the United Nations. I refer you to the program of this conference, where on page 2 you will find reprinted the UN Declaration on the Rights of Mentally Retarded Persons, which, in the second paragraph specifically, speaks of reaffirming faith in human rights.

Most legal rights relating to persons involve human rights, but you only need to recall the terror regimes of Hitler in Germany to remember legal rights which were devoid of any humanity.

On the other hand, it is important to be mindful that in general even those human rights which lack the affirmation as legal rights can and do have a powerful influence on our lives, and in many instances determine our actions as if we were facing the mandate of a law.

What is the meaning of all of this, within the framework of the theme of this Conference? Let me start with a simple and yet most fundamental point: out of the human experience has come the recognition that human life can be equated with growth and development. There is no standing still; there may be processes of deterioration leading to death, but growth and development is the basic fact of human life, and the most basic human right derived from this is the right to grow and develop, the right to move from childhood to adolescence, from adolescence to adulthood. Human growth is not just a physiological process. It expresses itself in many different areas of human life. Traditionally, one of the most basic impediments in the life of retarded persons has been a persistent effort to deny this growth process. Some years ago your own Canadian Film Board called persons with mental retardation "Eternal Children." Nobel Prize winner Pearl Buck referred to her retarded adult daughter as "The Child Who Never Grew." And last evening John DuRand expressed his exasperation in seeing grownup men and women come to his workshop with Mickey Mouse lunch boxes. His example was well chosen, because the daily use of such an inappropriate lunch box does amount to a daily denial that the person carrying the box has a right to be seen as being a young man, or a young woman, and, quite obviously, this denial will manifest itself in many other ways. Again, let me refer to Mr. DuRand's slides we saw last night. In one instance he showed, very compellingly, how just the surroundings, the work environment, in which we place a retarded young adult can be damaging when it looks like a playroom rather than a work station.

At first blush this point may impress you as being far removed from anything as high sounding as a basic human right, yet ever more increasingly we have come to recognize the significance of a term educators have long been using: "age-appropriate." My husband likes to tell a story how, very early in his career as the Executive Director of the National ARC, he was taught the importance of this factor by the parent of a retarded child. He had spent the day visiting various facilities of the parent association in the State of South Dakota, and had been taken by the State President to his house for dinner. After an initial greeting, the lady of the house had gone to the kitchen to prepare dinner, and the children were playing outside, with the exception of the youngest, a boy with Down's Syndrome who had remained in the living room. The father excused himself to make some telephone calls, and in connection with this story it is important to mention that he had been totally blinded as an adult. In any case, as the father talked on the phone my husband spoke to John, the boy with Down's Syndrome, and to my husband's great satisfaction, after a while John climbed on his lap and they continued to chat. As the father hung up the phone he listened for a second and, with the acuity of hearing many blind persons develop to compensate for their loss of sight, he surprised my husband by saying "Doc -- is that boy sitting on your lap?" And, without waiting for an answer, he added quite sharply, "John, you know where you should be. Go out and play in the yard."

My husband, who had been rather pleased that this child had responded so nicely to him, next got a lesson which he has never forgotten and which has helped him to understand a key problem in raising retarded children when the father said to him, "You must excuse my having spoken so sharply. I did not mean to embarrass you, but my wife and I became aware how we had not just accepted but encouraged in our retarded son a show of affection, hugging, and kissing, quite different from what was the case with our other boys. At the same time, our other children commented how John's babyish ways kept him from being accepted by the other kids in the neighborhood. So we, as a family, decided that just because John was very slow with his school work and physically awkward for his age there was no reason to treat him like a baby, and we all resolved to help him behave more like a nine-year old. And nine-year olds don't sit on stranger's laps! We feel it is of great importance that along with the love and affection of his family we help him to get a social acceptance from the other children in the neighborhood -- and it is working."

A long story about a rather simple matter, and yet my husband feels that there are only two or three other incidents in the many years of his work in the field of mental retardation which have been as helpful to him. I should add that this happened in 1958, and at that time you could have searched all the textbooks on mental retardation in Canada, the United States, and Britain, and in vain would you have looked for this basic insight into the growth needs of a child with Down's Syndrome.

There is a companion story -- it was not much more than a week later when my husband visited a fairly large workshop in Cleveland, Ohio. This was one of the few workshops that had a separate section for men and women deemed to be too severely retarded for the regular workshop training, but who were occupied with some simple manual work, sitting around a table quite far removed from the rest of the workshop activities. My husband stood quietly at a distance, observing this group of severely retarded people, when he noticed a man in his late 20s get up from his place, walk around the table and put his arm around a young woman, patting her. The man returned to his place and my husband was quite disconcerted about what looked to him like aggressive sexual behavior and the consequences it could have. Just then another young woman a this table burst into tears because something had gone wrong with whatever she was occupied with and, lo and behold -- the woman supervising this group got up from her place, walked around to girl who was crying, put her arms around her, doing exactly the retarded man had done a few minutes earlier. The connection between these two stories hardly needs to be elaborated. They both refer to the basic human right I mentioned before, the right to grow and develop, or, you might say conversely, the right not to be hindered in growth and development. And this serves me well as an introduction to discussion of an area that continues to evoke a great deal of controversy, not only among parents of retarded children, but also among workers in the field.

A very important part of our human existence is our sexual identification as a man or a woman, and the deep and abiding satisfaction we derive from relating ourselves to others as a man or a woman. Healthy sexual identification starts early in life; one learns to be a boy or a girl, in preparation of learning later on to be a man or a woman. Parents and others with responsibility for caring for retarded children became convinced that this was too difficult a problem for retarded people to handle and that the kindest and safest way was to keep them apart from sexual experience and heterosexual relationships.

Actually, experience has shown that what was sincerely meant as protection does not necessarily work out this way -- inevitably, situations develop where it is essential for the young retarded person to know how to behave with members of the opposite sex in a socially acceptable way. And we now know that sex education can be given in a way that is appropriate even to the limited understanding of severely retarded persons.

This brings me to another extremely controversial question regarding the basic human rights of retarded people -- namely, use of measures to control their sexual functioning. In recent years there has been -- from all we can determine -- an increase in hysterectomies performed on young retarded girls, some of them pre-adolescent, for the purpose of not only rendering them sterile but of relieving them and the family of concern with menstrual hygiene. In other cases, sterilization alone is performed.

In past decades, sterilization was deemed justifiable in the face of alarming information about the danger of genetic pollution. Today we not only recognize that most of this was misinformation; sterilization and, even more, hysterectomy is seen now as such a radical intrusion on a retarded person's right to bodily integrity that neither parent nor physician can give valid permission (excepting, of course, in medical emergencies which would require a hysterectomy for other reasons).

Does this mean that nothing can and must interfere with a retarded person's basic human right to relationship with the other sex, to marry and to have children? By no means. The Declaration on the Rights of the Mentally Retarded Persons has a very important clause in Article 7, which reads as follows:

Some mentally retarded persons may be unable, due to the severity of their handicap, to exercise for themselves all of their rights in a meaningful way. For others, modification of some or all of these rights is appropriate. The procedure used for modification or denial of rights must contain proper legal safeguards against every form of abuse, must be based on an evaluation of the social capability of the mentally retarded person by qualified experts and must be subject to periodic reviews and to the right of appeal to higher authorities.

In other words, one can appeal to the court for sterilization, but the term "proper legal safeguards" would imply that the judge in each case would inquire whether less radical steps could be used, such as proper sex education and birth control measures.

It is not hard for me to guess that quite a few persons in this audience will respond with distinct impatience to all these elaborate measures of safeguarding the interests of persons who appear obviously incompetent in the exercise of common life patterns. Two important points need to be made here: the first one is that we have increasing evidence that in the past we have grossly underestimated the functional capacities of severely retarded individuals, and persons like John DuRand and Marc Gold are providing some of this exciting new evidence. The second point is that the presumed incompetence of severely retarded persons has been the direct result of our failure to teach them, and of our depriving them of stimulating environments, and nowhere is this more clearly demonstrated than in our traditional large institutions.

Our concern with basic human rights of mentally retarded persons has gained additional significance with recent developments, led, unfortunately, by some scholars in the fields of ethics in the USA but reflected in other countries as well. What we are witnessing are attempts to prove that human rights can safely be disregarded with profoundly retarded individuals because, so it is claimed, they are not to be considered human; and therefore there should be no prohibition against any measure of controlling them, including killing them. One of these scholars. Professor Joseph Fletcher, goes one step farther and claims that a second group, not quite so profoundly retarded, should be considered as "semi-humans," entitled only to minimal care and protection (Fletcher, 1972). Nor is this to be considered a purely philosophical argument among scholars. We have evidence freely given by physicians in leading hospitals that they have put infants to death for the only reason that they were afflicted with Down's Syndrome.

The key point I would like to put before you is this: once we deny basic human rights to any group of retarded people, we cannot avoid having opened a Pandora's box. We cannot avoid a general devaluation of all mentally retarded persons; indeed, this is but a first step down the path of Adolf Hitler's policies. Once we allow parents to sterilize their young retarded children on the basis of one set of circumstances we open the way to other measures directed at other types of cases, and the hysterectomy as a means of avoiding hygienic inconvenience is a telling example.

I have made references several times in the foregoing remarks to parents and their relationship to their retarded child. Lest I be misunderstood, I would like to add here some further comments on the great significance which I ascribe to the parent-child relationship, because one of the most deeply ingrained human rights in your country and mine is the right to live with one's own parents, in the protective circle of the family. Moreover, the past several years have brought us a great deal of compelling evidence that parents can and must assume a significant partnership role in any program sponsored by any agency on behalf of their children, particularly, of course, during their early years. I make a special point about this because often when I discuss with parent groups the rights of retarded persons, some parents inevitably raise the question "Do we as parents have no rights at all?" Most definitely, such rights exist and must be acknowledged; some of you heard me discuss, for instance, the new special education law in my State of Massachusetts, which spells out in great detail the right of parents not just to be informed but to participate in decision-making concerning the school program of their child. But this importance of the relationship between child and parents, and the great supportive value of the family situation must -- in terms of the child -- be seen as a basic human right to live with one's family, and this should imply a right for assistance to the family from the appropriate outside agencies so that the child can receive proper care. In other words, care away from home should take place only when all means have been exhausted to bring to the family necessary help. And as you are well aware, British Columbia, along with all other provinces, has barely scratched the surface in applying well known, proven measures of supporting a family in raising their retarded child at home. Rather, the Province, for its own convenience, prefers to maintain easily managed large institutions -- with results I need not go into here.

There are, of course, situations when a child requires services outside the home, but they will always be clearly definable. But what about the family who for good and valid reasons is unable to take care of a child in the family unit? In such cases the basic human right of the child to live within a family situation should mean a right to be placed in a substitute home which provides, as much as possible, the security and acceptance which fosters individual growth. I realize that this is a point bitterly contested. But it is frankly untenable to speak of the overwhelming importance of the family home (and I agree with that) on the one hand, and, on the other hand, to move in the opposite direction and depend on the impersonal care of an institution when the family feels unable to cope with the child for an indefinite period. A time-limited stay for a specific treatment plan in an appropriate therapeutic institutional setting is, of course, another matter.

I have at various times this morning made references to problems of children and adults with Down's Syndrome, and I realize how unsatisfactory it is to talk about such intensively human issues in an abstract way. My husband and I have had the great fortune to be able to watch the growth and development of a large number of retarded children in various countries from early childhood into adolescence and adulthood, and this has given us a strong sense of optimism for what lies ahead. Therefore, I thought it would be appropriate if I share with you this morning the success story of a child with Down's Syndrome -- in other words, of a child who in the opinion of some would not be considered a human being -- and should either have been sent to an institution or done away with altogether.

I have chosen his story because toward the end I am referring to some of the problems we have discussed here this morning.

Jacques Dumont is a young man with Down's Syndrome in his early 20s. He lives in a large city in Belgium with his parents and younger brothers; in the office where he is employed he runs the addressograph and mimeograph machines, goes to the post office and the bank, prepares the morning and afternoon coffee, and is a helpful and trustworthy worker. He lives 15 minutes from the office and likes to walk home from work but also can use public transportation. He does his own personal shopping and independently calls up favorite relatives to invite himself to a meal. Growing up in a family with musical interests he enjoys opera and ballet, and not only listens himself to classical music but informs his mother of good radio programs. While his reading skill is minimal, listening to radio and television keeps him aware of current events, and at election time he knew for which candidate he wanted to vote and did so.

After his parents became involved in organizing a group home for mentally retarded young men and women, Jacques began to visit there independently, not just to socialize but to be helpful, for instance, with newcomers, whom he tries to make feel at home. He rides a bicycle, swims well, and has learned to ski. He has taken trips by train and plane by himself, and although he is rather shy, he has learned to handle social situations reasonably well. While he looks younger than his real age and his posture is not the best, his physique has without doubt been greatly aided by the opportunity to help on a farm during summers. Pitching hay and driving a tractor are not activities one usually considers appropriate for young people with his handicap but they have been right for him, and undoubtedly have substantially contributed to his physical development and self confidence.

The point is often made that while a young person like Jacques can manage in the protective environment of his parental home, he might easily feel "lost" in some other living situation in the community, such as a hostel or supervised apartment. Yet many of Jacques' present leisure activities are carried on independently. He attends on his own a swimming club; he purchases his own tapes and, having learned from his brother, records favorite radio programs; another hobby he enjoys doing alone is making woolen carpets. He needs no help in preparing a sandwich or other light snacks for himself.

In the past Jacques has fallen in love several times with non-handicapped young women, passing infatuations which left him sad. He knows he is an adult (and uses that word); someday he may want to establish his own household as other adults do. Now that he likes to visit in the nearby hostel, he might perhaps find a young woman there he may want to marry. Jacques will need help at that point in realistically grasping the demands of such a relationship, along with the problem of maintaining a household. Still, if having a separate household turns out to be too much of a challenge, the young couple may be satisfied to have their own quarters as part of a hostel or group home, at least at the beginning. In general it is assumed that men with Down's Syndrome are not capable of reproduction. Should tests prove the contrary, the question of pregnancy prevention would have to be discussed with the young couple in terms which they can understand.

It can be said that Jacques is more ready to live in such a situation than society is ready to provide protected work, suitable living arrangements, and, above all, supportive counseling. Undeniably, Jacques is a human being with considerable limitations, intellectual and physical, but they are not so severe nor are they as serious an obstacle to living in the community as is commonly assumed of persons with Down's Syndrome. But to me he is also a symbol of the value and effectiveness of organizations such as yours, and it is indeed appropriate that the office where he works so effectively is that of the International League of Societies for the Mentally Handicapped, an organization with which you are affiliated by virtue of your membership in the Canadian Association for the Mentally Retarded.

I hope many of you are aware that the Declaration of Rights for Mentally Retarded Persons, adopted by the United Nations General Assembly in 1971 and reprinted in your program, was initially adopted three years earlier, in 1968, by the Jerusalem Congress of the International League of Societies for the Mentally Handicapped, based on the findings of an International Symposium on Legal and Legislative Problems in Mental Retardation held in Stockholm in 1967 (ILSMH, 1967).

The strength of the League lies in the fact that it brings together from some 60 countries parent organizations concerned with mental retardation, and it is on their combined wisdom, energy, resourcefulness and commitment that I pin my hopes for a brighter future which indeed will assure to all retarded citizens their basic human rights -- not as a myth but as a reality.