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Third Caribbean Congress on Mental Retardation, Barbados, W.I., 1974.

Some time ago, Dr. Kan, the distinguished Japanese leader in mental retardation, prepared for an international congress in France a series of slides of new Japanese mental retardation institutions. In order to afford his western colleagues a more realistic opportunity to assess these institutional buildings, he started out with a number of slides showing typical Japanese middle-income and low-income housing as a basis for comparison.

I was reminded of this very thoughtful and very effective gesture when I began to think about what I wanted to say to you today, and realized how little I know about these, your Caribbean Islands, because this is indeed my first visit here.

Fortunately, I am aided by a new development in our field which evolves around the normalization principle, first formulated in the late 1960s by Bank-Mikkelsen of Denmark and Bengt Nirje of Sweden and very rapidly accepted in many countries as a guideline to programming. Most succinctly stated, the principle of normalization aims at making available to mentally retarded individuals patterns and conditions of everyday life which are as close as possible to the norms and patterns of the society of which they are a part. It goes without saying that such patterns and conditions vary according to age and differ as between city and rural areas; indeed, it is important in our context to be mindful of the fact that it is normal to be different. Thus, normalization does not denote rigid patterns -- to the contrary, in general, societal patterns make room for variations sufficiently to accommodate the major portion of mentally retarded adults. We have proof of this from the fact that in all countries where surveys of the prevalence of mental retardation are undertaken, we identify a large number of individuals as retarded in the school population, but the number identified in the adult population is distinctly smaller. In other words, many retarded individuals manage, once freed from the label of the special class, to melt into the general population, to adopt a lifestyle, however limited or marginal, which "gets by," which still falls within the flexible limits of what a community will accept. Most of us deviate in one way or another from accepted community norms, but that does not cause us to be called "deviants," as the sociologists use the term.

In any case, the principle of normalization makes it possible for me to present broad general outlines of new knowledge, new trends in the field of mental retardation which can be interpreted by you within your own societal frame of reference. There are two points which need to be underlined. Normalization does not imply that we "normalize" individuals. This would indeed have a very obnoxious connotation. Rather, it refers to the circumstances, the conditions, the rhythm of life. Furthermore, in the definition I gave before, the words "as close as possible" need to be emphasized, because this element of relativity makes it possible to apply this principle to even the most severely handicapped individuals. For them, too, we must see that provisions for their care do not deviate any more from what is commonly accepted in society than is specifically necessitated by their condition.

These introductory remarks may strike some of you as rather commonplace, as too self-evident to state them with such emphasis. Yet nothing has been more injurious to mentally retarded persons, nothing has handicapped them more than the preconceived notions, the prejudicial judgments with which they have been considered, and which, right to the present day, have constrained our programming.

The title for my presentation is "Preparing the Mentally Retarded for Adult Living." Yet some persons feel even today that mentally retarded individuals do not reach the status of adulthood. While we do not hear as much today about the "eternal child" as was the case some years ago, in many subtle and not so subtle ways the mentally retarded person is treated as if a child. In part this is reinforced by a very widespread misunderstanding of the psychologist's reference to mental age. Even in reputable psychological texts one still can read that a mental age of 9 means that the retarded adult can be expected to be like a child 9 years of age. Obviously, it would be rather futile, if this were true, to prepare such an individual for adult living. However, in the first place, a mental age of 9 signifies no more than that on one of the standard intelligence tests the overall performance of the person (i.e., his mental age) was arrived at by averaging out the individual's performance on numerous sub-tests, on some of which he or she may have scored as high as the 12 year level and on others below the 9 year level. Thus it is very misleading to liken that performance to that of a child of 9. In the second place, what is measured by the test is intellectual performance, a very partial assessment of a person that leaves out the capacity to adapt oneself to social situations, one's life experience, and the individual's degree of physical maturation, which allows for a greater range of activities than the 9 year old is capable of handling. All these factors make it possible for such a retarded person to assume adult roles which would be definitely closed to the 9 year old, and to perform adult tasks of which the 9 year old would be incapable, both physically and socially.

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There was a time when it was at least excusable to think of mentally retarded persons just in terms of what was then familiar to us, the mentally retarded child seemingly incapable of achievement, appealing forever for our love and above all for our protection. And that protection was most easily effectuated by continuing to treat the mentally retarded as children, by relieving them (that was our reasoning) of the burden and danger connected with adult status.

There is no longer any excuse for this. The basic premises on which this point of view was based have been proven unfounded. Years of hard, imaginative pioneering by parents and professional workers have resulted in many cases in a complete reversal of what had once been accepted as definitive knowledge. Thus children once considered ineducable are today educated in the public schools. Retarded adults, once considered unemployable, are working in the competitive market. And others, once considered totally dependent and incapable of even self-care, not only have mastered those skills but leave the shelter of their home and are productively occupied in activity centers. Since I have been privileged to become acquainted with mental retardation facilities and services in some 35 countries, I can attest to the fact that demonstration projects incorporating this new knowledge are not just limited to a few advanced countries. They literally can be found around the globe. Yet tradition has great force -- particularly so if it is linked to popular prejudice.

Thus, there has been considerable lag in the application of this new knowledge, both on the part of parents and on the part of professional persons. This latter point needs underlining. What is required is not just an effort to educate the parents and the general public with regard to the new dimensions of the problem of mental retardation; the professional practitioner, the college teachers, and the writers of textbooks used by the students need to be helped to shed old beliefs, and to recognize the faultiness of research studies previously accepted as definitive.

It is, of course, impossible to present to you a full account of all the new knowledge gained, and I must be content with a few examples. A good number of you are familiar with the fact that in the past it was generally believed that there was a group of individuals known as "profoundly retarded," of whom we accepted that they not only would never learn to dress themselves and to learn such elementary things as using the toilet, but we even accepted as a fact that once dressed they would not keep their clothes on. The number of institutions is steadily increasing where you will not find a single person running around naked or lying on the floor surrounded by urine and feces. On a higher functioning level, we now know that while reading and writing are useful skills, a person without them can still find his or her way about in the community along familiar routes, and can learn to handle public transportation. It was a cliche readily accepted by educators that only the mildly retarded were capable of any abstract thinking, of translating knowledge gained in one situation to another situation, and that of course implied that the others were incapable of making any decisions. This, too, has proven to be completely false. To be sure, in the traditional situation, whether at home, in school, or in the institution, every decision was made for persons with mental retardation; they had no opportunity of developing any capacity for making decisions. Today we know that even mentally retarded persons who may have difficulty in expressing themselves verbally with clarity nonetheless may well be able to make choices and act on the basis of these conscious choices, and that is what decision-making is all about.

However, it is not just our knowledge about the potential of the mentally retarded person that has changed. We have also gained some significant new insight regarding the requirements for functioning in a community setting. The traditional viewpoint focused on pointing out that, as life has become more complicated and more involved with mechanization and technology, retarded persons who were able to get along in the small community or rural area could no longer keep up with the increasing demands of modern living. There is increasing evidence that this is an oversimplification. Much of the new technology in effect assists the retarded person. He no longer needs to read the newspaper -- he gets extensive information through radio and television, and does so with far greater effectiveness than a slow reader perusing a newspaper. Shopping in self-service stores is manageable for a person with very limited language, and experience has proven that even the subway system of New York City, which overawes the visiting stranger, can be handled by a youngster formerly rejected by school systems as incapable of profiting from education. It is, of course, not my intention to convey that the disadvantage of an intellectual deficiency can be discounted. Being retarded is a substantial handicap. But its consequences are by no means as sweeping as previously depicted, nor is the retarded person as inaccessible to remediation as had been assumed.

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With this introductory and explanatory statement, I now can address myself to the specific topic the Program Committee has assigned to me -- "Preparation of the Retarded Individual for Adult Living." You will now readily see why I first of all have to stress that in pursuing this topic we must avoid starting with the traditional, preconceived notions as to what retarded persons cannot do, cannot achieve. Instead, we should start positively with regard to the kind of life a retarded person should be expected to lead, and the starting point for that would be the life pattern of the average person in your own country, be it in the city or in a rural area, in Jamaica, in Trinidad, or in Barbados, depending on the type of person for whom we are supposed to plan -- and in this case this means his or her potential functional level, considering the degree of disability.

Let me give some specifics. As adults, retarded persons should master a higher level of self care, no longer just limited to toileting, washing, and dressing, but extending to such things as preparation of simple meals, awareness of time and time limits, understanding of health needs (proper clothing, basic diet, alertness to potential danger), and the ability to get about (whether it is in the immediate neighborhood, limited to traffic signals, or more extensive travel involving public transportation). They should develop an ability to communicate with others, and while we automatically think here of the fluent use of language, we have learned that individuals who have no speech at all can make themselves understood and can actually interact socially with others.

An important point in social relations with others is to learn the proper form of addressing and speaking with adults, and that of course implies that we take care of teaching this by example, by teaching retarded adults a different type of language use than what was appropriate for them when they were children. For ourselves, we take it for granted that the informality of endearing language we use within the family is not appropriate when dealing with others in public. Yet this cardinal rule of social conduct is almost always overlooked in dealing with retarded persons. As a result, they do not learn to use appropriate language with others in the community, and this faulty speech pattern immediately sets them apart -- quite unnecessarily -- as inadequate/ peculiar, or, to be more precise, childish persons.

As I was preparing myself for my appearance today, I came across a statement in which a colleague of ours set down, clearly and succinctly, provisions for the development of acceptable behavior on the part of severely and profoundly mentally retarded residents in an institution. She said that towards that end, such individuals should

o live in as normal a way as possible, with their own living space and in a small group,

o be recognized as individuals; use of proper name, enjoyment of one's possessions, including one's own clothing, identify with

one's family, etc.,

o live in a bisexual world,

o experience a normal daily rhythm (which does not imply a rigid time schedule), utilizing a variety of environments (for sleeping, eating, leisure, etc.),

o eat in a small group,

o receive special education and training in all areas of personal and social development,

o have the opportunity to try out all appropriate activities of daily living (household chores, handicrafts, and work activities),

o have leisure pursuits which are individualized and differentiated according to the time of year,

o have the opportunity to interact with a variety of people including their peers, and

o be able to choose between different ways of spending their free time.

While this specific list was written for retarded persons in institutions, it does not contain a single item that would not be of equal significance to mentally retarded young adults living with their own family or in a group home. Much of this, of course, one would hope school will begin to teach, but experience has taught us how much of this can also be managed at home, particularly since some of the newer training techniques in behavior modification have been adapted for use by parents in the family home.

In recent decades, behaviorists and educators working in the general field of human development have become very much interested in the concept of the peer group and its practical application. Perhaps one of the most exciting new developments in our field has been the introduction of this concept to strengthen programs of preparing mentally retarded young people for adult living. First in Sweden, then in other countries, a definite effort has been made to assist mentally retarded young people to organize themselves, not just for social activities, important as this is, but beyond such a program. The retarded young people learn to interact constructively with each other, learn to express themselves, learn how to carry on a discussion, to debate an issue, to formulate and state their own views, interests, and opinions, and to arrive as a group in an orderly process at certain recommendations. In some instances this has been done particularly successfully when the retarded young people had an opportunity to interact and meet with non-handicapped young people, and young persons with other types of handicap. The results have been totally astounding and, as a matter of fact, so surprising to even seasoned practitioners in our field that questions were raised whether indeed this was done by the retarded young people themselves, or suggested to them by their elders. This is not surprising, considering our past beliefs, our past images of the retarded person. It parallels a similar phenomenon: encountering a group of retarded young people neatly dressed, their hair well groomed, their behavior inconspicuous, people simply refuse to believe that these could be severely retarded persons, because of the past association of severe retardation with clothing appropriate for persons much younger in years, disheveled appearance, a running nose and drooling mouth, a silly grin, poor posture, ungainly obesity, and strange mannerisms -- all characteristic of an inappropriate upbringing and a neglect that would not be tolerated for a non-handicapped person.

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Let me give you one sample of statements young retarded persons have formulated for themselves in Sweden several years ago in the report of a conference that had brought them together under the auspices of FUB/ the Swedish parent's association. Among the points they made were the following:

Leisure Time Activities

We found that:

We want to be together in small groups during our leisure time.

Dance evening ought not to be for more than 14-16 persons.

Under no circumstances do we want to walk in large groups in town.

To have better contact with leisure time leaders, we think they should be of the same age as we.

We have all agreed that we want more power of participation in decision-making, especially in planning and implementation of leisure time activities.

We all think one should decide oneself what to do during vacations.

Living Conditions

We found that:

We wish to have an apartment of our own and not be coddled by personnel; therefore we want courses in cooking, budgeting, etc.

We want the right to move together with the other sex when we feel ready for it, and we also want the right to marry when we ourselves find the time is right.

We who live in institutions and boarding homes have found that:

The homes should be small.

We want to choose our own furniture, and have our own furniture in the room.

We will absolutely not have specific hours to follow in terms of going out, returning, etc.

We want to have more personal freedom, and not as it is now in certain institutions and boarding homes where you have to ask for permission to shop for fruit, newspapers, tobacco, etc.

We who live at home have found that:

It is largely good, but one ought to move out when the time is right to a service sheltered apartment or hostel; one cannot for his whole life be dependent on his parents.

We want, however, to have our own key when we live at home. Questions Concerning Work

We demand more interesting jobs.

We do not want to be used on our jobs by doing the worst and most boring tasks we do at present.

We demand that our capacity for work should not be underestimated.

We want that when we are working in the open job market, our fellow workers should be informed about our handicap.

We think that we should be present when our situation is discussed by doctors, teachers, welfare workers, foremen, etc. Now it feels as if they talk behind our backs.

We demand to have more information about our handicap, and the possibilities we have to enter the open market.

Last Day of Discussion

Today we have talked about what to do to improve the bad conditions we have found during the discussion Friday and Saturday:

We demand that continuous information should be given to the counties and communities, schools, sheltered workshops, and other institutions for our handicapped group about the prevailing bad conditions.

We demand also that much stronger information be given to people in general through newspapers, radio and TV.

We have elected today a committee of six members and two alternates with the following tasks:

The committee shall continuously receive reports about the decisions of the National Board of the Swedish Association for Retarded Children.

The committee shall work for the general public and pressure the authorities. (Nirje, 1969)

You will say that the group which produced this document surely was composed of mildly retarded young people, but that is not so. The group included persons who previously had been denied admission to special classes in the public schools. Furthermore, in a very significant demonstration in Israel, Dr. Chigier has successfully shown how to use the peer group approach to motivate and to prepare severely and profoundly retarded adults, previously considered as totally incapable of any structured, productive effort, for a work experience in the orchards. Specifically, Dr. Chigier first worked with this group of young people in a recreational program with only one purpose -- to get group interaction and group cohesion among these individuals, who previously had largely led a solitary existence. Once he had reached that goal, he moved with the whole group into the orchard and what he had anticipated came true -- by supporting each other, by a group motivation, these severely handicapped young people for the first time gained a sense of accomplishment, a sense of being an adult, participating member in a society where productive effort was valued most highly. I might add parenthetically that a film Dr. Chigier prepared of this demonstration is available from the US Rehabilitation Service in Washington (Chigier, 1968).

I have tried to sketch out for you in my presentation some new approaches in the preparation of retarded young people for adult living. But at best I have presented only a small segment, a very partial picture. A few weeks ago my husband participated in a small conference that was to project a picture of mental retardation in the year 2000. In this discussion he stressed several times the urgent need to improve our techniques of early intervention, of improving the assistance we should give today to the families of severely handicapped infants and very young children. Some members of the group commented impatiently that what was needed was to think "long range" to the year 2000. My husband answered that that was precisely why he was so worried about early intervention, because children born within the next few months would be in their 25th year by the year 2000, and our job was to give them the best possible preparation for a meaningful life as adult citizens in our communities.

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Jean Vanier, whose vision, faith, and wisdom resulted in the creation of some 45 small homes in nine countries around the world for handicapped men and women who were either roaming the streets, locked up in asylums, or just living idly, in a recent speech made an observation that sums up better than I could what I have tried to convey to you. He said:

A man or woman can only find peace of heart and grow in motivation and creativity if he or she finds a meaning to life. If handicapped people are there only to be helped and can bring nothing to others, then they are condemned to a life of simply receiving, of being the last, the most inferior. This will necessarily bring them to depression and a lack of confidence in themselves. This in turn will push them into anguish and make them aggressive towards themselves and others. For them to find real meaning in life, they must find people who sense their utility, their capacity for growth and their place in the community and in the world. (Vanier, 1974)

Jean Vanier has given us the challenge. Will we be ready to meet it?