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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).