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Eighth World Congress on Mental Retardation, Nairobi, Kenya, 1982

When I started to think about the topic of today's meeting, my mind took me back about ten years to the League's Symposium in Lisbon, Portugal, on the development and operation of national societies and their relationship to the International League. We considered how the League could encourage and strengthen such national societies, what their problems were, and what kind of challenges presented themselves. In a paper prepared for that meeting I pointed out some of the highlights in the development of our associations during the preceding decade, in fact the first decade of the League's existence.

Among these were the following:

1. There had been a growing recognition that the mentally handicapped child was not a "child forever," but, like all other human beings, grew up to become an adult. In addition to changes in the specific programs the associations offered, this, just then, was causing League members to drop the word "children" from their name. We were becoming conscious of the inadequacy or inappropriateness of certain other words we were using. Even though the League had adopted two years earlier our Declaration of General and Special Rights of the Mentally Retarded, its full meaning had not yet been absorbed in the mainstream of the League members' thinking and vocabulary.

2. I pointed out that the spectacular growth of some of our member societies had brought with it problems in the relationships and balance between the volunteers (the parents) and the professional staff in their respective roles in the administration of our societies.

3. My third point dealt with the need to bring new blood into the Society. What could be done to make room for younger parents?

4. I spoke also of the need for continued emphasis on what had been, from the very beginning, a main characteristic of our movement, the mutual aid directly from parent to parent, well exemplified by "Action Interfamiliale" then under development by UNAPEI, our French member society.

Since those days the League's member associations have made tremendous progress, but in some way or other the problems I then enumerated are still with us, and in at least some of the areas, it has been the very progress that has led to an accentuation and intensification of these questions.

I propose to use the traditional journalistic approach of WHO, WHAT, and HOW to describe the situation as I see it today. Furthermore, in view of the limited time available, I shall concern myself with the problems faced by the large metropolitan local associations of industrialized countries.

It is in the large local societies that we often find today a rift, a chasm between the old leadership group and the new members. In many cases our societies were started from within the upper middle class group, the well-to-do though not necessarily rich people. Their goals often resulted from a desire to obtain life time security for their children. The newer membership, often persons of lesser means, are seeking more limited, more immediate services. Furthermore, with few exceptions, our large metropolitan societies, which by sheer weight of numbers and financial resources have a powerful influence on the national organization, have failed to attract the underprivileged families who make up such a large proportion of a metropolitan population. Although this failure has been commented upon not infrequently, I have yet to see a study which deals with this crucial weakness in our organizational pattern in a meaningful way.

From my own visits to such large cities' associations, I would list as possible causes the setting and time of membership meetings the traditional emphasis on association procedures (e.g., an agenda full of financial committee and sub-committee reports), and often also a guest speaker with a technical vocabulary that confuses rather than enlightens.

Increasingly we also observe a generational gap between the old leadership and the young families we wish to attract. This is not just a difference in age, but very much also a difference in needed services, and a difference in the general orientation to the problem of mental handicap; that is to say, in some areas the young families are more enlightened.

It is of course ironic that this more enlightened approach to mental handicap on the part of today's young families is the result of the successful efforts of our pioneers in providing educational information to the general public, and in overcoming old prejudices. I have rarely visited, in recent years, one of our large city associations, well staffed and rich in programs, which did not convey disappointment that so few "new" young parents could be recruited into membership (even from the parents who are using services provided by the association in a variety of aid programs).

Some years ago I observed with great satisfaction that many of our associations had started youth groups from among secondary school pupils or university students. It seemed to me that this was a most promising effort to recruit young people who could grow into leadership or who would in any case provide eventually useful indirect community support. However, recently I have observed and heard little along such lines. But I do remember well the valuable contribution of a member of such a youth group in Sweden attending a League symposium on volunteers in 1971.

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Finally, in talking about the WHO, undoubtedly the greatest challenge to our associations comes from the persons with mental Handicap themselves. After yesterday's exciting program, I do not need to spell out the significance of this self-advocacy movement further. It obviously is much easier for the League to arrange for participation of persons with handicap in a Congress like this, that takes place every four years, than for a long established large city association to work out meaningful participation or collaboration. I use the word collaboration because some of the groups which call themselves PEOPLE FIRST do seek an independent status rather than a formal membership arrangement.

Turning now to the WHAT, to the substance of the work of large city associations, the focal point today as always must be on the individuals with mental handicap and their families. Our new understanding of the developmental process of human growth as the mainspring of our activity presents new challenges. Traditional programming is no longer adequate in the light of a lifelong growth process that needs to be strengthened and supported for the disabled child from birth, and that is open-ended, that is to say, without fixed limitations once accepted as "realistic."

The new emphasis on early intervention has led to a rediscovery of the family. The emphasis is on bringing services for the handicapped infant and very young child to the home. This requires quite a shift in policy for societies that have developed a complex service system which serves the handicapped child away from home.

I am of course aware that there are associations which have done an exemplary job in this respect, but I see my task as pointing up problem areas that need attention and which the International League can help resolve through appropriate symposia, workshops, guidelines, and related materials.

How fast progress is made in our field is well exemplified in the area of early intervention, where we recognize the need of integrated services. Depending on circumstances, that may either be a program for many types of children with handicap, or, indeed, a general child health service.

On the other hand, changes must arise from our increasing understanding of the great importance of creating and reinforcing in young adults with handicap the awareness that they have grown out of childhood and must learn to enjoy their new status (and I should add here, of course, the words "in ways appropriate to their growth process").

To that extent, the comprehensive, all inclusive service complex developed by some of our large city associations needs to be dis-integrated so that adult services can be provided (as they usually are in our communities) separate and apart from those for children. And obviously this raises another and difficult question: What about the adolescent?

I am, of course, aware that large city associations with massive buildings and massive systems may not be numerous, but I do know of enough others which hope for and dream of the day when a benefactor or a new, generous government will enable them to have their own building complex with an extensive and comprehensive service system.

Turning now to the HOW, to procedural problems, the following points seem to be particularly germane to large city societies.

One relates to the style in which the association governs itself. Some of our large city associations have allowed themselves to grow to such proportion that they indeed constitute a major business enterprise, and that persuades them, of course, to hire business executives. Nobody should be surprised that this frequently results in an estrangement between the business managers, with their staffs, and the members -- the parents. In other large city organizations one can observe a similar phenomenon: a highly qualified, properly certified staff, directed by an executive director who is also an outstanding professional. In the course of years this may easily result in a volunteer leadership on the board of directors which becomes so absorbed with professional services and all they entail that they themselves obtain almost professional status. But where, oh where, does that leave the general membership, old or new?

It is by no means a contradiction to emphasize the need for fruitful relationships with the relevant professional groups, because of the already mentioned trend towards integrated services, integrated across disabilities and disciplines. This would imply of course also a greater emphasis on specific fruitful relationships with parent associations representing different fields of handicap.

A major area of procedural and administrative problems relates to the financing. New developments in our field, related both to our much more positive outlook on mental disability and the potential of persons with handicap as well as our recognition of the rights of persons with handicap to respect and to dignity, put into serious question fund raising techniques which, in the past and right into the present, have played on the theme of "pity for the unfortunate" with great financial reward.

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On the other hand, depending on government as a major source of large scale financing can lead to an unhealthy and inhibiting dependency on agencies which our societies should feel free to scrutinize and criticize. After all, you should not bite the hand that feeds you. To a lesser extent, any collaboration with government can become an impediment to a well developed association program when such collaboration in fact can be the power to "persuade" the association to concentrate on certain programs to the neglect of others. A similar danger would flow from the imposition of rigid standards that might be needed in a large bureaucracy, but which are inappropriate for a voluntary association that should be free to be flexible.

I commented earlier on the significance of words in our work, and that of course relates to terminology which has become outdated and which rightly causes anger and despair among persons who live with a mental handicap -- I am sure that the panel of self-advocates we listened to yesterday morning could have given us some telling examples.

In closing, let me state quite clearly a bias I have with regard to the function of our societies. It is my belief that their task is to obtain services, not to provide them. Obtaining services quite frequently will involve one or more demonstration projects which may well last for several years, whether it is a program for severely and profoundly handicapped children, some innovative vocational training, or examples of new living arrangements in the community, for those who cannot or should no longer live with their family. And there are, of course, those important services which are inherent in the functioning of our societies, such as parent-to-parent counseling, continuing education of the public, and legislative action.

I am well aware that any proposal that will result in curtailing the income of an association will meet with much resistance. As always, the role of the International League will have to be to distribute relevant information about existing model programs, to provide workshops and seminars where these issues can be discussed in detail, and to make available position papers which will aid the leadership of national and local societies in charting their future.