I am the parent of a mentally retarded child. The second of my four children, Stephen, who is now nineteen years old, was born mentally retarded. It is not easy — even after nineteen years — to speak openly about a situation in one’s family which is somehow considered shameful, guilt-ridden, and to be hidden. It is easier now. As Pearl Buck says in the introduction to The Child Who Never Grew, the eloquent story of her own retarded daughter: “I have sometimes wondered, as the years passed, whether the moment would come when I might feel that my purpose for my child must include the telling of her story. I dreaded it. I still dread it. Nevertheless, the time has come, for there is afoot in our country a great new movement to help all children like her.”
To a person as imbued in the study of a particular social problem as I have been for many years, it is well to be reminded now and again that the general public — lay, professional, or even those personally involved — do not really know what you are talking about. This observation is probably true of many of the difficulties inherent in our present complex society — juvenile delinquency, alcoholism, chronic disease, old age. It is doubly true of the problem of mental retardation which has been with us since the beginning of time and is overlaid with centuries of misunderstanding, prejudice and fear. Plato mentions the retarded in his Republic; primitive societies recognized the retarded and put them out on the side of the hill to die. The retarded were the jesters, the scapegoats and sometimes the revered of the Middle Ages. In modern times every village had its idiot whom a kindly folk took in out of the rain. Children still hear about Simple Simon and Epaminandos. Everybody believes that Esau, although strong and a hunter, was a fool, who sold his birthright cheap and probably needed better parental supervision.
The World Health Organization’s Report on the Mentally Subnormal Child states: “It is only during the last century, and in particular within the last forty or fifty years in parts of Europe and America, that some consideration has been given to the special problems presented by persons suffering from mental subnormality or social incompetence. The need for such consideration has arisen partly owing to the industrialization of society and the consequent growth of cities, partly because of compulsory education. The increases in the social services which characterize modern society have led to a growing recognition of this need. Today it is still rare to find existing the conditions which would render it possible for subnormal children to make full use of their limited abilities and potentialities.”
How then orient the general public to a real and growing understanding of the rightful place of the mentally retarded in our present society? The Report further says: “Popular education can be given in a number of ways … but few things can do more to break down the mistaken stigma attached to mental subnormality than the public declaration by respected members of the community that they, too, have handicapped children.”
I am the parent of a mentally retarded child. When my Stephen was born he seemed like any other normal healthy infant. He was full grown, ate and slept well, and was lovely to look at. The obstetrician and pediatrician found him perfect. Had I not had another child born six years earlier, I might not have suspected anything either. But from the moment Stephen was laid in my arms, I felt that something was not quite right with him.
He was too quiet, even for a new-born infant; he was too good; he felt too close and yielding and soft against me. When the nurse said he was the best baby on the floor, never cried at all, just ate and slept, my heart jumped within me. Yet I did not know quite how to express my misgivings and so kept quiet. After all, who was I to question my doctors, both of whom were teaching professors, or my husband who also was a physician, well-trained and practiced general medicine? I point these things out because they have bearing upon the great need for training amongst physicians and nurses in early recognition of signs of mental retardation. Probably a neurologist would have detected signs, but the ordinary physician was not trained to think and observe in terms of possible defect, except in cases of gross physical or neurological abnormality.
I certainly had no comprehension from my academic training and bowing literary acquaintance with the terms moron, imbecile, idiot, of the hazards which confront a child in the pre-natal and natal periods. I had only the feel which a mother develops from close handling and management of a child.
I took my baby home. He progressed normally enough, but not fast enough for me. He picked his head up a little later than he should have; he did not roll over until six months old; he was late in reaching for objects, late in walking, late in recognizing people.
By two years, Stephen was walking, he was toilet-trained, he was sleeping in a big bed, he could handle a spoon at feeding time; he was not talking, not even making any baby sounds. Above all he was good, good, good — sweet, lovely looking, tractable, almost desperately so, because it was becoming more apparent that something was not right with this child.
Guided always by what I knew was normal development in my other son who was six years older, I could see plainly that Stephen’s gait was poor, that even if he did not talk he should have been making his wants known, he should have been more alert to people around him and to things happening all about him. By this time my physician-husband must have known what the trouble was, and my pediatrician; but nobody wanted to tell me.
We went one day just before Stephen’s third birthday to the famed neurological clinic at the Children’s Medical Centre, and left him overnight for diagnosis. Then the blow came. I remember I went alone that next day to hear about Stephen. I knew much was amiss; perhaps I went alone because I could not bear to face my husband and the awful truth with other eyes watching. I was not prepared for what I did hear.
I was told that Stephen was severely mentally retarded; that he would never develop beyond childhood; that I should take steps to send him away immediately to some institution for the rest of his life for the sake of my other child and my family.
The physician who spoke to me was very kind; she tried to make me understand that Stephen’s rate of mental growth would be progressively slower; how difficult it would be to keep Stephen at home as he grew older; how withdrawn and lacking in understanding neighbors would be, especially since I lived in a large city. She told me that an institution can be very good for a child who needs that environment. I heard her voice dimly through my confusion, the blood rising in terrible painful waves to my face and head. I took my dead child who was living and went home with him.
I have dwelt overly long on this part of Stephen’s story because it illustrates so well how desperately necessary is good professional counseling by doctor, or better still a social worker when diagnosis is first made. I prided myself on my Radcliffe training; I had a large and general knowledge, I thought; knowledge of mental retardation was not part of it. I had never seen an institution for the retarded; I did not even know they existed, and my picture of any institution was vague, dismal and Dickensonian. My husband knew very little more. I was alone, I had nowhere to turn for a helping hand, no one to tell me what this place was really like, nowhere to go back to for another talk, for a bit of assurance, a suggestion perhaps that there might be some temporary alternative. No one thought at all that perhaps one does not send a little boy away from a happy home just because he is different. No one thought at all that perhaps the little boy’s brother might love him and need him, too, rather than be harmed by his presence in the household.
Had Stephen gone away, my part in his story might have ended. But he stayed with us; two other children came to join the family circle, and Stephen had his place in it. I did not have any particular plan for him. We found a little nursery school that accepted him.
The nursery school teacher gave me the first real advice on handling Stephen. When I tried to compare Stephen’s development with that of the other children of the same age, she said to me (and I have always remembered this advice and tried to follow it), “Don’t think of Stephen as being three years old or four, just think of him as Stephen.”
Stephen began after his sixth birthday to talk — not as you or I — but intelligibly to those who lived with him. He was dressing himself to a greater extent. He grew rapidly physically, slowly in mental development. Every sound that he uttered, every coordinated movement he made, I cherished and tried in my inexpert way to cultivate. We did well enough. Stephen was happy. The other children accepted him as part of the family; the neighborhood in which we lived did not shun us.
There were occasional problems that arose in handling Stephen in a community situation, but they were not radically different from day-to-day community relations that arise with any family. We operated on as natural a basis as possible. “Stephen is slow,” we said when people asked questions, or even before questions were asked.
Stephen himself began to contribute to the family. He hung up his own clothes, he hung up the clothes the other children left about; he emptied wastebaskets; he went up and downstairs tirelessly on the many errands of a big household. He never went far from the door and was always available. If directions were simple and given one at a time, he performed miraculously well and increasingly well as demands were put upon him.
Above all, as I said before, he was so good about everything, so sweet, so willing, never asking for any return other than a pat on the head or an affectionate “Thank you.” We did not do a job analysis or a character analysis, but we were unconsciously discovering that a person with modified intelligence can make a very positive contribution to living. And when there was nothing to do, Stephen liked to sit by himself in company. What a blessing to a busy mother to have a child among the others who was not constantly injecting his personality into the schedule of the day. What a blessing to brothers and sisters to have someone always available. “Stephen, get my ball.” “Stephen, be an angel, and pull back the covers on my bed to air.”
Stephen fetched and ran and carried. He nicknamed himself DUZ. “Duz does everything,” he said.
We were startled at this indication of a sense of humor, we were amazed at this understanding of a slogan, we were happy that Stephen felt he was necessary. We laughed and were merry together.
But the future looked bleak to me. What was the next step? Was I giving Stephen the right training? Should he be in school? Should he be getting speech lessons? Maybe, maybe it was wrong to keep him out of the institutional setting?
I began casting about for possible day schools, still without any guidance. I just did not know where to look, and frankly I was afraid to inquire too much because of the finality of the first counseling that was given me. Then the miracle happened!
Stephen was about nine years old when I received a telephone call one day from a woman unknown to me who lived in my neighborhood. Did I have a retarded child? Yes. Would I come to a meeting being held that evening by other parents of retarded children? Other parents? I was not alone? Would I come! Oh, yes, yes, I’d be there!
In one small evening, a whole new world opened up to me. Here was a whole group of parents like me right in Boston. They all had retarded children living at home like mine, they had joined hands to discuss mutual problems. The opportunity to talk with others who knew without explanation the worries, the perplexities, the fears, was wonderful indeed. There was only a handful of people present that evening — already they seemed more brothers to me than my own brothers. And they had answers to my questions. I discovered that there were not a few, not hundreds, but many thousands of children like mine, that they varied in type and degree from crib cases to those who were almost normal. I discovered that the Walter E. Fernald State School for retarded children in Massachusetts had existed for over a hundred years; that there were public school classes in Massachusetts required by law for the more able retarded children.
I discovered that many professionals, as well as the parents at this meeting, believed that even severely retarded children could be kept at home, especially if community facilities could be developed for them. It was for this purpose that this group of parents, with the aid of some professionals in the field, had decided to organize themselves into a bonafide agency. They already had a charter under which they could raise funds; they had a purpose, a program and a plan. But they were still pitifully small in membership, funds and leadership. A brochure printed in these early years states the purpose of the organization: “The purpose of this Association is to promote the general welfare of the exceptional child: By — improving the provisions for diagnosis and treatment. By — providing suitable educational programs. By — developing adequate recreational facilities. By — creating better understanding among the general public.”
It was plain that there was work to be done to make even a dent in such an ambitious program. I joined the group, which had a small membership charge, rolled up my sleeves and went out into the world with the others to help make the program a reality. It is only in retrospect — and this only very recently — that I realized what I was setting out to do.
I joined the organization (if it could be called such at the time) to achieve something for my child. Stephen’s story winds like a continuing thread through my development as an organizer and through the development of the group into a bona fide agency whose purpose was the welfare of all retarded children wherever they might be, at home, in a school situation, or in an institutional setting. I found that I had latent abilities; that my education and work after college years as a research assistant stood me in good stead. As Oliver Wendell Holmes once said, in quite a different context: “This matter, gentlemen, is too important for either humility or vanity.” (Lecture before a group of physicians on puerperal fever.)
I attacked the problem from all sides: I read; I listened to professionals in the field wherever I could find them — doctors, teachers; I talked and exchanged ideas with anyone who would listen. Much was known, much more was not; and the general public, including parents, was woefully ignorant.
As I was learning, I was moving out into the field to get something done — what I had not been able to do alone I was afraid of no more. I knew there were other people with me and behind me, friends in mutual trouble.
We helped to start other parent units, we set up our own play centers and class rooms for children who were refused admission in the public schools; we garnered statistics on prevalence and ferreted out children that had been hidden away. We invaded the institutions and got parents of the children there to organize and become part of the movement.
There was a wealth of resource in these institutions for improvement of the lot of retarded children, both within and without its walls. But they were old and isolated from the community (too many people like myself had never heard of them); they were understaffed and overcrowded; they needed community support themselves before they could begin to give help to the children still in the community.
The enormity of the problem was unfolding to us, both in terms of need to be served — according to age and degree of retardation — and in terms of the tremendous prevalence of the condition: three out of every 100 children born are mentally handicapped. There are 140,000 in Massachusetts, over five million in the United States. Wherever we turned for help and guidance, we found that we were the teachers, we were the resource. Docendo Discirims might have been our slogan.
The first and most pressing need in our own area seemed to be public school education for more of our children. Some of the local organizations like ours were conducting their own classes and after a while were successful in getting school committees to take them over as part of the school system. By law in Massachusetts it was not compulsory, as with regular kindergarten. A delegation visited the school committee of my home town. We were refused. Children with an I.Q. under 50 could not attend special classes. I took our case to our League of Women Voters. They undertook a special study of special classes in the town; we had an ally. The following year a few children were admitted, Stephen, with his I.Q. -47 label among them. The climate and our efforts were bearing fruit.
What joy in our own household. Stephen was going to school like other children. I had been teaching him his letters and simple arithmetic. He needed a very special curriculum which he probably would not get; even the teacher, who had a wide variety of pupils was not sure what he could learn. It did not matter. These things would come. We had waited so long, we could wait longer; curriculum and teacher training would evolve out of accepting the children. The main thing was that Stephen really belonged in our community just like all the other children; from his acceptance would come acceptance for other children and for other needs.
One incident sticks in my mind. One day Stephen came home from school with pictures that had been taken in school. “Look, Mummy, pictures just like the Alfred gets in school.” He was beaming. There was the strip of pictures right enough, and Stephen’s likeness wearing a great wide grin from ear to ear. The retardation was plainly to be seen on his face. I had the old misgivings which I tried to hide from Stephen. This child really was different; maybe we should not show these pictures. “Oh, Stephen,” I said, “these aren’t too good. If I had known you were to take pictures, I would have had you all dressed up with your best bow tie and jacket.” The child did not hesitate a minute. “But look, Mummy, how happy I am!”
I hugged him to me and learned my lesson anew. Of course he belonged. We separated all the pictures in the strip and Stephen took them around to all his friends in the neighborhood to show that he really was in school.
Stephen remained in special class from the time he was eleven until he was seventeen. He learned to travel by himself on the bus, he used the common lunch room, he could do excellent simple carpentering under supervision, but he still could not read very well, he could not make change, he could never make his way in the world without some supervision.
What next, again? Would it be the institution or would it be just sitting at home? What about the future when his parents were gone? Stephen’s story could very well have ended here, had it not been for the Massachusetts Association for Retarded Children, full-fledged now with a state-wide reputation as a voluntary agency, and affiliation in the National Association for Retarded Children, which had the support and recognition of professionals and of the Federal government. We had a policy, a plan, and a program under way both privately and publicly supported. It would take several articles to give a picture of it.
My story does not imply that the growth of interest and activity on behalf of the mentally retarded during the last decade is the work of our organization alone. But there is no question that the faith of this group of parents in their children, and their faith in the ability of our society to do something for them, were the catalysts which stimulated public and private agencies in the direction they are now taking.
Here in Massachusetts, a special Legislative Commission, created by law of the General Court, has been working on revision of laws for the retarded in the Commonwealth. An indication of the stature which the parents’ organization has achieved in its quest for an equitable program for retarded children is the fact that one member of the Commission is required by law to be a member of the Massachusetts Association for Retarded Children. By appointment of former Governor Dever and reappointment by Governor Herter, I serve in that capacity on the Commission.
Education even for the group of retarded children with I.Q.’s under 50 is now compulsory in the public schools; the Children’s Medical Centre has a guidance service for parents who come to the diagnostic clinic; there are nursery classes, recreation, adult social centers and several sheltered workshops supported in part by Federal funds; the state institutions have new buildings and expanding programs; there is a vast Federal program started this year for research into causes and treatment and for training of much needed personnel.
The National Association has just begun a study of long-term guardianship and insurance plans. Much work remains to be done, but recognition of the need has come. Interest and support in the last two years has increased ten-fold. Stephen is on the high road at last, and he can never be lost now.
As I look back on the past ten years of work, the pattern and relationship of our activities to those of the rest of the world about us emerge more clearly. I have been so intensely involved in this work that my perspective must be skewed at best. I think, however, that we are part of a more general awareness of the inter-dependence of all individuals.
Mental retardation is a handicapping condition that existed for a very long time. Why this upsurgence of a grass root movement at this particular time? It is because the world is very much with us today. We know (many of us perhaps only subconsciously) that if our way of life is to survive, every individual, be he handicapped or whole, be he white or black, be he a privileged American or an underprivileged peasant in India, every individual must be counted an individual and accorded his place in the sun.
For every person who is discounted, by so much do we allow for the spread of discontent; for every person whom we help to attain his rightful stature, by so much do we prevent the spread of strife.
We are becoming aware that preventive hygiene must expand beyond total inoculation for communicable disease to total service for every disabling condition, or we are all liable to be afflicted by the consequence. The social loss or the social gain is shared by all.
Our society is engaged in such prevention — this particular organization of people to help the retarded is, in its small way, also a part of such prevention.
Learn more about Pearl Hurwitz and the current and past recipients of the Pearl Hurwitz Humanism in Healthcare Award.