Are We Retarding The Retarded?
by Dr. Gunnar Dybwad, A Presentation at the Tenth Anniversary Convention of the National Association for Retarded Children, Minneapolis, Minn., in October, 1960
Editor’s Note: Gunnar Dybwad was an early and prominent advocate for people with mental retardation and other developmental disabilities. From 1957 to 1963 he was executive director of the National Association for Retarded Children, now known as the Arc. For a decade, Dr. Dybwad taught at Brandeis University, where he was professor of human development and founding director of the Starr Center for Mental Retardation at the Heller School.
In striking contrast to the vigorous and determined leadership of the early pioneers of our movement who pursued their course of action in the face of seemingly unconquerable odds, there is too much readiness in our midst today to accept the limitations others set to our work, and indeed increasingly one hears the comments “We are tired” and “We do the best we can.” Surely a vital organization should not be tired after just ten years of existence. And just as our early leaders were not content when officials or agencies assured them in those days that they did “the best they could do,” but demanded the best possible for the retarded, we, as local, state, and national association, must apply the same measuring stick to our own present efforts.
There is of course much to report that is encouraging and that is indeed inspiring. In preschool groups, in public school programs for the retarded, in residential care and sheltered workshops, there are many examples of outstanding programs which represent new imaginative thinking and set new frontiers. But all too often one finds that programs have been at a standstill, local units are content to “hold the line,” and far from planning aggressively a well-rounded program for all the retarded, many communities offer a very limited program to only a small portion of the retarded.
When it takes not only months but years to put into effect simple public health measures, such as those needed for the prevention of mental retardation due to phenylketonuria so that as a result of these delays children needlessly become victims of this now controllable disease, it is time to become impatient, it is time to get angry.
Perhaps there is need for us to remind ourselves from time to time of the accomplishments of Dorothea Dix, the New England schoolteacher who in the last century singlehandedly fought for humane treatment of the mentally ill and the mentally retarded, appearing before and gaining support from state legislature after state legislature at a time when there was no place for women in public life. Or perhaps we must remind ourselves with greater frequency of that most effective champion of our cause, Representative John Fogarty, who relentlessly day after day battled for hours on end in the House of Representatives on behalf of the retarded and of other handicapped people and who finally won the fight after everybody was sure it was a hopeless effort. Did he do this because he is a politician or because he is a man with a purpose and the determination to stick with it?
Lest you feel that I am shouting for more action just for action’s sake, that I am asking that we storm forward without really any place to go, let me specify some of the areas where I feel we are falling behind from lack of determined push.
It was nearly 100 years ago that Dr. Samuel Howe, the first superintendent of this country’s first institution for the retarded, now the Fernald School in Massachusetts, decided that he would do well to separate the retarded residents of his institution into three groups in accordance with the severity of their handicap. After the introduction of Binet’s intelligence test early in this century, a new seemingly scientific basis was provided for this three-way classification. Ever since then the terms “moron,” “imbecile,” and “idiot” have been considered as clearly delineated groupings of the retarded, and while in the early 1950s we substituted the words “marginally independent,” “semidependent,” and “totally dependent,” to this day our institutional facilities and many of our community services consider this an adequate basis for planning.
Thus when it comes to assigning mentally retarded children and adults to services and facilities, the mental age is still taken as a determining factor in spite of the fact that studies in this country and in Europe have shown very clearly both that there can be a distinct upward change in the rating of the mentally retarded person who is subject to favorable, stimulating environment and training and also that the mental age of a mentally retarded person frequently shows such a spread between his various abilities as to be an unreliable factor in placement. Yet over and over again we stymie the potential growth and maturation of the retarded by limiting their program to our narrow expectations.
In the early 1950s when the educators looked for a basis for what appeared to be a needed differentiation between school programs for the mentally retarded, the terms “trainable” and “educable” were introduced and seemed to serve the purpose well. But practice has moved ahead and today this sharp dividing line — identified usually by an I.Q. figure — no longer fits our expanding knowledge. We see new, rather fluid groupings of upper and lower trainables and upper and lower educables. Can one say that this is just “playing with words” when their use provokes tensions and misunderstandings in many of our communities and states, and conveys a basically wrong concept of the problem with which we deal?
Let me give a very specific and, it so happens, most up-to-date example: Dr. Samuel Kirk, the distinguished educator, was quoted in a meeting here as having recommended that classes for the trainable should be removed from the jurisdiction of the public schools and placed in the department of mental hygiene or department of welfare. Such a step would, of course, create a major administrative upheaval in many places and so I took the opportunity of discussing this with Dr. Kirk. What I found is not surprising. Dr. Kirk does indeed feel that in the lower echelons of the trainable group there are individuals who are unsuited for school programs and should be in day-care programs under child welfare auspices. But by no means does he feel that ongoing classes now in the public schools should be transferred to another department not under educational auspices. This is a good example of the problems and confusion which arise from what has become a too limiting terminology, a terminology which no longer adequately serves the need of the retarded.
Another instance is the increasing use of the terms “educable” and “trainable” in the sheltered workshop realm, where this school terminology is inappropriate and prejudicial to the interests of the more severely retarded.
Let me cite a few other examples where we are retarding the progress of the retarded in the field of sheltered workshops and rehabilitation. It so happens that yesterday I received from Mr. Samuel A. Brown of Arlington, Virginia, one of the many volunteers who assist our International Relations Committee, the translation of an article from the August, 1960, journal of our Danish sister-organization. The article deals with the development of workshops for the retarded in Holland and brought back to me vivid memories of my own visit there. There is no question but that the Dutch have the most progressive workshops for the retarded anywhere in the world. Considering that Holland is a small country, devastated during the last world war and shortly thereafter literally ripped apart by the worst flood on record, we might well ask ourselves why we as a wealthy nation are lagging so far behind. The article perhaps provides an answer in its very first sentence: “A realistic adaptation of the mentally retarded to society can be achieved by not underestimating and by not overprotecting them. By giving them a real chance many can hold their own — even including the imbeciles -i.e., the more severely retarded-.”
I hope many of you who had the opportunity of hearing Dr. Rick Heber last night are reminded of the very significant finding he reported to us — that a too gentle, too permissive, too nondemanding regime for the retarded, one which protects him from failure, works very much to his detriment and seriously interferes with future training.
This insight is reflected in the program of these Dutch workshops. As I travel about this country, I am at times amused but also chagrined at the many explanations I get as to why our workshops often do not even come up to what used to be known as “banker’s hours.” The Dutch insist that their workshops are run for the full working day; they are not unmindful of the value of recreational and other socializing activities for the retarded, but these are arranged for during the evening hours, something we seem to consider too much of a bother. Perhaps I should quote here the statement by Dr. Speijer, a public health official who administers programs for the retarded in The Hague — and please keep in mind that he is including the more severely retarded. “Our basic standpoint is simply that in reality there is no tremendous difference between the mentally handicapped and ‘us others.’ ”
This attitude is reflected as much in the Dutch workshop product as in the workshop procedure. Listen to what Dr. Speijer had to say on this to his Danish audience:
A completely wrong way of going about it is to manufacture those things which are traditionally prepared by the mentally handicapped and sold at bazaars. We must get away completely from everything bearing the stamp of philanthropy, away from embroidery and brushes. The workshops must manufacture products which can be sold on the open market and stand up to competition.
One other factor which, it seems to me, is of greatest import here pertains to the approach to training. The thrifty and efficient Dutch think nothing of having the training of a mentally retarded in a workshop (we are not talking here about school) extend to four and even six years. Compare this with our own impatience, our tendency to stamp people failures after a far too short training and trial period.
We might make reference here to another instance of “retarding the retarded”: I hear in my travels that our parents hesitate to send adolescent girls and young women to workshop programs for fear harm may befall them. Furthermore, those of you who have studied the splendid report by Gerhart Saenger, The Adjustment of Severely Retarded Adults in the Community, will remember that he comments upon the fact that the adjustment of the girls was far less satisfactory than that of the boys, presumably because they did not have the freedom of movement in the community which is so essential as a learning and growing experience. Yet Saenger’s study also showed that the great fears of sex activity on the part of the severely mentally retarded have little basis in fact.
We must ask ourselves what is the picture we present to the public — of ourselves and of those for whom we speak? If we talk only of retarded children, we must not be surprised if the community and the authorities are not ready to support programs for retarded adults. But also, if in our statements we seek narrowly the advantage of our own charges only and do not indicate a knowledge of and concern for the needs of other handicapped groups, we deprive ourselves of effective help from community agencies, community leaders, etc., and in the long run we retard our progress. This does not mean that we should neglect our cause, or fail to speak out specifically on our needs, but any step must be taken with an understanding of the total situation.
The situation is not such that we can afford as local associations to pick from the broad challenge shown on our now famous circle chart — “A Well-Rounded Program for the Retarded” — whatever activity appeals to our membership or “fits in” best with the situation we find in our community or, worst of all, happens to appeal to our benefactors. A man who promises us money under restrictive conditions which keep the local association from doing what is essential, such as supporting its state association, is not a benefactor at all.
Many of our units continue to emphasize the school classes they operate exclusively and do not recognize the long-range problems of the adult retarded, whose progress will thus be retarded by a lack of planning.
In city after city we meekly submit to the dictates of people in community councils and United Funds or in certain places in local welfare departments — of people who have not even begun to understand the over-all problem of mental retardation. As you know, we cooperate with the United Funds that are willing to make adequate provision for the mentally retarded in their fund-raising program, but we should not consider them as qualified to determine our policies and to hold back our programs for the retarded.
The refusal of some united funds and community chests to support our state and national association is becoming a more serious problem month by month, but we must in fairness acknowledge that within our own membership there are units so parochial-minded that they can think only of the children in their own community. The state association seems to them to be far away and the national even farther. Yet it would not take much effort to show that it would be in the best of interest of their children for us actually to support mental retardation activities in foreign countries as well. Phenylketonuria was discovered in Norway, the phenylketonuria diet in England by an English-German team, the new chromosome discovery in Mongolism took place in England and France simultaneously, and just now the National Institute of Neurological Diseases and Blindness reports further important advances in Mongolism research from Australia.
It is just and fitting that we pause here today to acknowledge our lasting indebtedness to the pioneers of our movement, to those early leaders who set for themselves such high and far-sighted goals. But we should be mindful that we can do them no greater honor than if we depart from this tenth anniversary convention with renewed vigor and steadfast determination to pursue these goals. The path is clearly marked for us; we cannot afford to lag behind.
How to Cite this Article (APA Format): Dybwad, G. (1960, October). Are we retarding the retarded? Proceedings of the Tenth Anniversary Convention of the National Association for Retarded Children, Minneapolis, MN. Retrieved [date accessed] from http://www.disabilitymuseum.org/dhm/lib/detail.html?id=1722&page=all.