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-* Presented at the Summer Institute on Social Work in the Rehabilitation of Mentally Retarded Persons, Teachers College, Columbia University, July 17, 1967.-

-**Professor of Human Development, The Florence Heller Graduate School for Advanced Studies in Social Welfare, Brandeis University.-

Not only in the United States but in countries around the world we find today an unprecedented increase of interest in the welfare of the mentally retarded. Whole new systems of services to aid them and their families are being developed, supported by extensive governmental and private efforts. A vast literature has appeared during the past ten years and is growing at ever increasing rates. Millions are spent on research and demonstration projects. Thus it appears quite paradoxical to start off our Institute today with the question "Who are the mentally retarded?" Yet, this paradox is part of the picture we encounter when we take a broad look at our field.

Indeed, what one encounters with increasing frequency is not just a question as to who exactly are the mentally retarded, where are they to be found, and how many are there. The suggestion is seriously offered in recent professional literature that there is no such thing as mental retardation. Usually those who are inclined to deny altogether the validity of the concept of mental retardation point out that as it is commonly understood it covers such a multitude of so widely divergent conditions, resulting from such separate areas of biological or cultural origins, and manifesting themselves in such different, unrelated forms that there is no logical basis for a collective designation.

It is useful in this connection to relate that for a good many years now similar argumentation has been raised against the term mental illness since here, too, a wide conglomeration of conditions of varying origin are brought together.

I can not subscribe to these views. It seems to me that not just for the purposes of an Institute such as this one, but for the daily practice of the rehabilitation, health and welfare practitioners and administrators present here, both these concepts can offer a sound and effective basis. I am willing to concede that there is some validity for the position of those who would prefer that we speak of the field of mental illnesses rather than the field of mental illness, and similar preferences for the plural form have been stated with regard to epilepsy, cerebral palsy, and could be made with mental retardation. Yet in many other instances, we have traditionally used the singular in a plural sense, without any particular resulting problems in communication.

A different position would have to be taken if one were to deal with an institute attended by physicians, bio-chemists and other biological scientists, and concerned with specific diagnostic and therapeutic considerations. But our focus is obviously on the social manifestations to be observed, and the social measures to be considered, and in that context I think we can find a sufficiently firm point of departure in the concept of mental retardation defined as:

Significant sub-average intellectual functioning, manifesting itself during the development period, and associated with distinct impairment in adaptive behaviors.

You may recall that an Expert Committee of the World Health Organization, convened in 1953, suggested for international usage the term mental subnormality, which was to be subdivided into two categories: mental deficiency for cases of biological origin, and mental retardation for cases of socio-cultural origin. Even though this proposal was a focal point of a widely distributed pamphlet published in 1954 and entitled "The Mentally Subnormal Child" (which, by the way, is a most useful document even for today's practitioner -- available through the Columbia University Press or directly from WHO), this terminology has not been accepted, and the World Health Organization today is using the general term mental retardation in its official documentation.

Those of you acquainted with the definition of mental retardation officially adopted by the American Association on Mental Deficiency will note that I have added in the version I presented here two qualifying adjectives. Instead of sub-average intelligency, I spoke of "significant sub-average intelligence" (a suggestion originally made by John Kidd), and instead of impairment in adaptive behavior, I mentioned "distinct impairment in adaptive behavior." This refers to a major international controversy which time does not permit to pursue here in necessary detail, but which can be briefly described as a disagreement between those who are inclined to extend the concept of mental retardation into the area of relatively minor deviation from the norm, and those who feel that both from the point of view of the individuals so characterized and from the point of view of effective administration and practice, a more narrowly circumscribed conception is preferable.

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Fortunately, for the purposes of our discussion here, this matter can be fairly clearly put forth with the statement that the policy of adding to the field of mental retardation a wide area termed "borderline" is to be rejected. I strongly subscribe to that view and was pleased to find myself in agreement with an informal committee of experts the World Health Organization brought together in 1965. If you consult older psychological textbooks, you will find reference to the term "borderline intelligence". The AAMD's decision of 1959 to substitute for that term "borderline mental retardation" cannot be characterized as simply a semantic variation. It is unjustifiable for the reasons I have set forth earlier, and leads to endless confusion.

Where does this leave us as far as the boundaries of mental retardation is concerned? In former years, the likely answer in response to such a question would have been that an I.Q. rating of seventy to seventy-five on a Standard Intelligence Test would constitute the upper boundary and, indeed, I recall earlier years of institutional practice where this was a firm State policy. But today one would express this differently saying that, in general, the realm of mental retardation does not extend beyond an intelligence score of seventy to seventy-five but does, by no means, include all below such a score, and yet in exceptional cases may reach beyond it. In other words, what is suggested here is that it is no longer tenable to maintain a policy of designating all those with an intelligence rating below seventy to seventy-five as mentally retarded. Whether they should be so designated depends not just on measured intelligence but on the second criterion in our definition of mental retardation:

A distinct impairment of adaptive behavior of the social performance in day to day living normally expected from a person of a particular age by the community (or culture) of which he is a part.

Thus a man who scores an I.Q. of sixty-five on an intelligence test and who at the same time shows himself well able to adapt to the social demands of his particular evironment -sic- at home, at work and in the community, should not be considered retarded. And, indeed, we now know that he is not so considered and this, of course, is the reason why large scale attempts to identify the mentally retarded in a given community always ends up with a far smaller number of them than was predicted from the expected distribution of intelligence.

However, much as we are aware of this second criterion "social adaption", so far our attempt at quantifying it through measures similar to the various intelligence tests has failed. This then is the reason why we are unable, at this time, to give a clear answer to the question "Who are the mentally retarded and how many are there?"

One point seems to be clear -- the viewpoint which only a few years ago was almost universally accepted in this country and is still today expounded in textbooks and statements of public policy to the effect that three percent of the population is mentally retarded is no longer tenable.

But what do we know about the prevalence of mental retardation? We know that between one tenth and two tenths percent of the population, in other words one to two in a thousand, are so retarded as to require residential care under present circumstances. This is an area of wide international agreement as far as the so-called developed countries are concerned.

To a somewhat lesser extent there is agreement that in such countries between three and five tenths and four and five tenths persons per one thousand population would score an I.Q. below fifty.

In looking at these two figures in conjunction, it is important to realize that the first figure of one to two per thousand as needing residential care includes a substantial number of those who have a measured intelligence above an I.Q. of fifty but a marked impairment in social adaption.

Attempts to get a realistic estimate of how many mentally retarded there are beyond these two categories so far have resulted in widely varying figures -- the lowest ones coming from the Scandinavian countries. It is a sobering thought that we must today admit that we know far less than we thought we knew five to ten years ago!

But what about the qualitative aspect of mental retardation? What can be said about differential levels or degrees among the mentally retarded? Here, too, we are confronted with a realization that our knowledge is far less definitive than we had ever presumed. Twenty years ago, any student of psychology could quote, at the drop of a hat, that the mentally retarded were divided into morons, imbeciles and idiots and that these groups corresponded to I.Q.'s of from fifty to seventy (or seventy-five) in the first instance, from twenty-five to forty-nine in the second and from zero to twenty-four in the third. Somewhat later, increasing opposition was voiced to these particular terms and mild, moderate and severe were seen as more appropriate designations for these three levels and the WHO Report of 1954 (to which reference was made earlier) adopted these terms for its recommendation.

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It was a happy state of affairs, indeed. All we needed was a psychometrician to provide us with an I.Q. and, presto, we not only knew to which of the three levels of mental retardation to assign the person in question, we also could look up from charts one could find in textbooks just what could be expected from such a person. And since I.Q.'s were believed to be fixed, that was that.

But then came disturbing new discoveries -- for one thing, I.Q.'s as an expression of the person's intellectual functioning were found subject to distinct changes, if conditions in his life changed to a sufficient degree. And secondly, it was realized that along with the measured intelligence, social adaptation was a crucial factor in judging the degree of a person's mental retardation.

And how has our practice in health, welfare and rehabilitation agencies responded to this? Quite remarkably by ignoring this new knowledge and by continuing to use the old so comfortable and convenient terms and concepts, ignoring the factor of social adaptation and basing our terminological judgements entirely on the measured I.Q.

At this point it is necessary to refer to educational practice which unfortunately confounded this situation even more. In the 1950's, educators in our country commendably sought to widen school programs for the mentally retarded beyond the classes existing for the mildly retarded. It was felt that for those of still less intellectual endowment quite different methods of teaching were indicated and the distinction was made that while the upper group of mildly retarded was capable of profiting from an "educational" process, the lower group could only be "trained" in simplest tasks, were incapable of rational thinking and unable to absorb any academic skills.

Hence the terms educable and trainable came into use. We cannot discuss here today the fallacy of this presumed clear-cut dichotomy in teaching methodology. What is important to bring out here is that shoddy thinking brought about a significant perversion in the use of these terms. Originally, they described two types of schooling, but by no means did anyone suggest that all children with an I.Q. of between twenty-five and forty-nine would be capable of profitably attending classes on the trainable level. Yet, by and by, more and more practitioners and authors simply referred to all children between twenty-five and forty-nine I.Q. as "trainable", with the result, of course, that we had trainable children which were found by the school to be untrainable, i.e., inadmissible to these classes. But worse yet, some workers in rehabilitation, health and welfare referred to post-school youth and also to adults as educable and trainable depending solely on whatever I.Q. score showed up in their record. And this practice continues to the present day in spite of the fact that there is not a single workshop or rehabilitation center which has not experienced that school performance, in an educable or a trainable class, is by no means a reliable predictor of performance in the workshop where quite different skills are demanded under quite different circumstances.

Another remnant from the static period of mental retardation is the unfortunate misunderstanding of a psychological concept, namely that of mental age. Intelligence tests are built on a succession of sub-tests, corresponding to the performance which can be expected from the average child aged three, four, five years and so on. It is therefore entirely justified to say that a certain twenty-year-old individual scored on a certain part of an intelligence test not higher than would be expected of a three-year-old child. It is much more open to question when we combine this twenty-year-old person's ratings on various test items and say that he scored on these tests as would be expected of a child of three and one half years of age, because what actually happened is that on some he scored as low as a two-year-old, perhaps on others as high as a six-year-old.

Experience has proven that most people are being misled by hearing that a person has a mental age of three and one half because they do not keep in mind that this is essentially the result of a mathematical averaging of a large number of test items. From this they move on to a far more insidious misconception -- namely, that this man, twenty years old, is like a child of three and one half and therefore should be treated like such a child.

This is, of course, absolute and disastrous nonsense because there are no three-year-old children who are five feet seven inches tall and weigh one hundred and sixty pounds, have had twenty years of some kind of social life experience, have adult sexual organs, and have the strength to stand for several hours lifting heavy logs onto a truck. Mentally retarded persons are not "eternal children" and this sentimental way of referring to them as such is an insult to their dignity as human beings.

One more point needs to be highlighted. Mental retardation is not infrequently associated with other handicaps, particularly those in the physical area. Sensory disturbance, crippling orthopedic conditions, cardiac and respiratory irregularities, neurological defects, deficiencies in motor coordination and muscle tone -- they all may substantially impair a mentally retarded child's social adaptation and also deprive him of opportunities for intellectual stimulation.

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Yet often we judge the rehabilitation potential of such persons without first making a determined effort (through medical intervention) to bring about an alleviation of these associated physical handicaps and thereby a substantial improvement in the person's general level of functioning.

Altogether too frequently a diagnosis is automatically read as a prognosis instead of merely as an assessment at a given time under given circumstances -- subject often to distinct change after a lapse of time or under changed conditions, as a result of greater stimulation and motivation, or as a result of specific therapeutic or educational intervention. The confusion between diagnosis and prognosis leads to a vicious cycle -- because it is felt a mentally retarded person cannot achieve a certain level of performance, cannot learn a certain task, he is excluded from such training and thus deprived of an opportunity to prove himself. Rather he can subsequently be pointed out as an individual whose low performance bears out the initial low estimate of his capacity.

On the other hand, most remarkable progress in general functioning has resulted in cases where, in spite of an initial low test performance, vigorous steps were undertaken to ameliorate the general life situation of a retarded person and to subject him to appropriate schooling or vocational and social training.

While in isolated instances, excellent work has been done also in our country, major credit for recognition and demonstration of the rehabilitative potential of the more seriously retarded goes to our colleagues in England, among whom Alan and Ann Clark, Jack Tizard, Herbert Gunzburg, Beate Hermelin and Neil O'Connor deserve special attention. Beginning in 1955, they have contributed to the professional literature lucid accounts of the results of studies which clearly showed how badly the capacity of those with I.Q.'s under 50 had been underestimated.

Again, recognizing that there have been outstanding exceptions in our country, it is nonetheless a matter of record that we have been very slow to emulate the pattern set by England in developing work training on this level or even to recognize adequately in our professional literature the significance of these research findings.

This brings us to a very important aspect: the frequent clear demonstration of hostility and resentment on the part of professional workers when confronted with information regarding the vocational and social achievements of severely retarded individuals. There is no time to dwell on this in detail but perhaps during the discussion period this might be brought up for another look.

At this point, I would like to introduce into this presentation the case of a young worker in an industrial training unit which is part of the mental retardation facilities in the city of Oxford, England. I had the privilege of visiting this Unit and to observe it work, but I must credit the technical details of this case story to an article by Paul Williams which is published in the June 1967 issue of the Journal of Mental Subnormality -- to my mind, one of the best journals available to rehabilitation workers in our field. I have selected this case purposely so that you can look it up in the literature if you are interested in more specific details.

This young man by the name of John is today eighteen years of age. He is an only child. His mother is a teacher and was forty-four years when John was born and his very early childhood was fairly uneventful.

At age two he started to talk and could say a number of words very distinctly. However, by the time he was five, it had become clear that he was severely subnormal (to use the English terminology) and so he was placed in a local training center which is the equivalent to what we would call a class on the trainable level. At that time, he rated about eighteen months social age on the Vineland scale. In the following year at age six, he failed to score on the revised Stanford Binet and, again, his social age was less than two years. In the next several years he was sick a good bit, was away from school a great deal and during that time of illness he stopped talking altogether and has had no recognizable speech since.

Now during all the ensuing years he remained at the lowest class at the training center, a class which (and this is unfortunately all too frequently the practice, not just in England but in many other countries) catered for the "babies", in other words the pre-school aged children admitted to the training center, as well as to the most severely handicapped, both in terms of physical as well as mental deficiencies.

Parenthetically, let me call your particular attention to this practice because it is a good example of a practice that is purely for the convenience of the staff and administration and does not take into account the major needs of the youngsters involved. Severely physically handicapped retarded individuals are a particular "bother" and therefore all too often they are left with the lowest ability group even though they very definitely need and can profit from stimulation of a group more in keeping with their own intellectual capacity.

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In any case, John remained in this group until at the age of fifteen when he was admitted for a temporary stay at a newly opened junior hostel in Oxford in order to allow his mother a brief vacation. I had the privilege to visit this hostel last year and it typifies a very important new development in England in a service area in which many of our states have done very little, if anything as yet. To the great surprise of everybody, John adjusted very well to the hostel and made some definite improvement in his ability for self help so when the time came for him to return home it was suggested that it might be very well if he could stay at the hostel for five days each week and spend his week-ends in the mother's home.

This was done and as a consequence he improved quite a lot in his general functioning but nevertheless six months after his admission to the hostel his rating on the Vineland scale was again only two years, two months, and on the Minnesota Pre-School scale, form A, he passed only one item for a non-verbal mental age of approximately two years and a verbal mental age of less than eighteen months. He still had no speech at all.

In other words, here was a young man with about as severe a mental retardation as one is likely to encounter in the community, who had had the benefit of a "training center" for ten years and whose minimal advance during all those years certainly would suggest a most dour prognosis.

Nevertheless, shortly after Oxford had opened this junior hostel, a new industrial training unit for the mentally handicapped was started and the director of the hostel strongly suggested that John be admitted to that. Naturally, this suggestion was received with greatest skepticism but, to the credit of all concerned, the youngster was so placed for a trial period.

For the first two days, the manager of the industrial training unit spent a great deal of time working directly with John and, in the beginning, had to hold his hands and force the action required for the simple task he was to do in stripping some plastic components. However, soon John began to dislike this and he began to work independently. After three weeks he had fully mastered this particular task, could be placed at a work table with other trainees and thus became a member of the working group. I cannot go into all the details of his continued adjustment but let me quote a few items about his subsequent work performance: During a typical morning's work, he was sorting plastic components of two shapes, the same color and about the same size. He worked slowly but steadily and during a half hour period, he sorted seven hundred items without making a single mistake. He also demonstrated that he could sort items by color and size. At a one point it was demonstrated that he remembered and could take up, without error, a working procedure which had been taught to him two to three months earlier but which he had not been engaged in for a considerable period of time.

Further testing still has resulted in a non-verbal mental age of between two and two and one half years. He still has no recognizable speech but can understand simple commands and recognizes his own name.

There are many other interesting details about this case which you can find in the article I have quoted, such as his ability to identify and correct mistakes which he is making in his work and his ability to react with appropriate motions when two boxes in which he is placing component parts are switched -- in other words, he would then switch his hand movements in order to continue to put the right part into the right box.

Time does not permit here to discuss other aspects of his adjustment. His placement in the hostel has made it possible to involve him in a program of recreation and of social activities but, in view of the vocational focus of this Institute, I have stressed his adjustment to the work process.

Unfortunately, I cannot show you a picture of John. But I do have pictures from a work training center for moderately and severely retarded young people in Slough, England, one that also has been described in literature and one I have visited many times during the past several years. You will see in these pictures a young man of similar low social development as John, totally without speech, with a minimal rating also on non-verbal tests. Yet this young man is able to work in a work training program for eight hours a day and to participate, even though on a minimum functional level, in the life of the hostel that is adjoining this particular workshop. As you will see from the pictures, many trainees in this workshop are capable of performing efficiently on machines and this, of course, so far has not been possible with either of these two young men nor can they participate in some of the advanced social training of which I show some illustrations such as learning to travel on public transportation, to make purchases, to use public telephones, and so on. Nevertheless, it is significant that individuals of this low capacity can learn to participate in a work program and through that work program and its stimulation can learn to participate in more satisfying social activities.

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One important point needs to be made here. It is often felt that we should not push such individuals of extremely low capacity into work and some authors have implied that this is a cruel and unethical procedure. Yet actually so far all the indications seem to point to work performance as the factor which stimulates these extremely retarded individuals sufficiently so they can participate in some group programs and enjoy group recreation and other pursuits.

At the same time, I want to reemphasize that this young man whose story I told in detail remained for years in a program that was not appropriate for his age and that, consequently, did not put before him the kind of increasing demands which should have been made upon him. This infantilizing of the severely and profoundly retarded is something one can observe in all too many countries and is a practice that urgently needs correction.

May I make an explanatory comment here -- I purposely have chosen cases from the lower levels of mental retardation because it seems to me we have, at this time, more to communicate from the lower to the upper levels than from the upper to the lower levels. But, certainly, I am aware that quantitatively the weight of our work must rest with the vastly larger group of the less severely retarded.

May I now bring my presentation to a close with a series of points that might serve to stimulate discussion and counter argumentation.

It seems obvious that we have been far too much influenced by prejudicial generalizations as to the expected learning capacity of mentally retarded persons in general and have let these generalizations stand in the way of needed efforts to assist each of these individuals toward his highest possible level of life fulfillment at home, at work and at play.

One of the most significant areas of recent exploration in this field deals with the development of the self concept in the mentally retarded, regardless of the degree of their handicap. I am sure you are acquainted with Dr. Henry Cobb's writing on this subject -- Let me call to your attention the excellent new book by Robert B. Edgerton "The Cloak of Competence -- Stigma in the Lives of the Mentally Retarded". It is of greatest importance to rehabilitation workers. Studies are needed to probe how the retarded sees himself among his contemporaries, whether less or more severely handicapped or non-handicapped; how he sees us and others who teach him or work with him and, last but not least, how this relates to how we see him. What does it mean to a retarded adolescent to be treated in school like a little child, singing nursery rhymes and playing silly games while after school hours he joins the rough life of the city streets which would frighten and horrify his teachers.

Studies are needed to show the problems arising from the different kinds of worlds confronting the retarded -- the world of home, the world of school, the world of the street and community, the world of work and their respective levels of language, feeling-tone, expectations.

Development of criteria and factors contributing to an adequate quantitative assessment of capacity for and performance in adaptive behavior must not just be an urgent concern of research centers but must be underpinned by day-to-day practical testing of existing and yet to be developed assessment scales to provide as soon as possible an operational basis for the presently accepted definition of mental retardation.

Developmentally appropriate activities must be provided in all areas of life for the mentally retarded and, of course, there must be added here the whole continuum of services which has been amply demonstrated as needed in support of the mentally retarded and his family.

May I now close with one more point: As of January 1, 1968, the Eighth Revision of the International Classification of Diseases will go into effect following its adoption by the WHO'S World Health Assembly. It includes a classification scheme of mental retardation which is essentially based on the one proposed by AAMD in 1959. Thus the designations -- mild, moderate, severe and profound mental retardation and their equivalents in the world's many languages provide for us a vastly improved tool for international communication. (WHO'S 1953 scheme was only a committee's proposal and not a result of proceedings before the World Health Assembly.)

In the light of the discussion here this morning, I hope that you are convinced of the increased usefulness of a four part classification scheme as compared with the old three part scheme, particularly since it is more discriminative in the area where we have made most progress -- that of the lower levels.

So -- could I plead that during this Institute we use this classification scheme and may I further urge that you do your part from the vantage point of your work to the end that the four levels of mild, moderate, severe and profound mental retardation will be better identified and provided with the missing evaluative links as far as that most elusive of factors is concerned -- adaptive behavior.