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Symposium of ILSMH, San Juan, Puerto Rico, 1979.

It is very appropriate that the International League of Societies for the Mentally Handicapped celebrates the twentieth anniversary of the United Nations Declaration of the Rights of the Child with a Symposium entitled, "The Mentally Retarded Child Today -- The Adult of Tomorrow." At the time that this United Nations Declaration was adopted, there was still a widespread belief that children with mental retardation remained children all their lives, were children who "never grew." They were, as the title of a widely acclaimed Canadian film indicated, "Eternal Children." Like its predecessor, the Universal Declaration of Human Rights, the Declaration of the Rights of the Child basically emphasized the dignity inherent in the human existence, and for children, this dignity rests in our respect for their potential to become adults, their growth into adulthood.

There has been a very significant change in this regard on a broad international scale, and the large number of national member associations of the International League who do not have or have removed the word children from their name furnishes just one indication of this change. But the title for our Symposium, "The Mentally Retarded Child Today -- The Adult of Tomorrow," goes farther. It obviously proclaims that the child, today still charactered and stereotyped as retarded, may tomorrow be just an adult. Does this mean "one of us" and no longer "one of them"?

What are the chances that this goal might be reached? What are the impediments we must recognize and neutralize or combat? Piously the first factor we must deal with is that of health. To become a healthy adult a child should be born in a healthy environment to a healthy mother and get adequate nourishment and care during the early years. In industrial countries, very considerable progress has been made during the past twenty years in prenatal services, in attendance at birth, and in services to the baby and mother. Infant mortality and morbidity rates are closely watched by governments in these countries, and there is almost a competitive spirit to push progress ahead of neighboring countries. Special protection during pregnancy, free checkups on the newborn, and documentation such as the Austrian Mutter/Kind Pass (a health passport for mother and child) are offered with increasing frequency.

But the situation is radically different in many of the developing countries. Far from having even marginal health care facilities and services, they cannot even assure the first requirement for survival, a minimum of nutrition. Maternal malnutrition to the extreme degree that is widespread in the world's poorest countries has been shown to be a significant contributing factor -- directly and indirectly -- to mental retardation in the newborn. Obviously, of equal significance is a minimum adequate nutrition for the infant during the early years of fastest growth. FAO, the Food and Agricultural Organization in the UN family, is indeed, in developing areas of the world, a major rehabilitation agency, with its mission to increase production of foodstuff and to work toward efficient and equitable distribution and transportation of available supplies.

Parallel with FAO's efforts is the work of UNICEF, which technically is no longer called an Emergency Fund but whose work in arranging mass feeding for children certainly is and for a long time will continue to be of emergency nature. Added to this are the activities of the World Health Organization in the field of maternal and child health, epidemiology, and disease control.

But what else needs to be done in countries whose children suffer extreme deprivation? A colleague of ours recently travelled to India to get a first hand experience of the mental retardation situation there and if possible offer some help. A letter from him has this to say:

As you know quite well, the poverty is so severe in India that it is difficult knowing where to start. All efforts being done to help the poor are just scratching the surface of the known need ... Mother Teresa's homes have several hundred retarded children and some adults, but no education is being provided, only maintenance ... They primarily see their role as one where they provide T.L.C. and not training and not education... When the basic needs of food, shelter, and clothing are not being provided for so many millions, it would be difficult to spend limited resources on training handicapped persons. In India they must spend their time on issues relating to life, before they can address the issue of the quality of life.

I am not surprised about his reaction because it is shared by many of our colleagues. However, there are some considerations that should be further pursued during our discussions. In the first place, while it is, of course, true that in India people are starving and are without minimum shelter, there are also cities like Bombay, Bangladore, and Delhi, where large numbers of people live in comfort and have university educations. If they have a handicapped child with blindness or mental retardation, they, like similarly situated parents elsewhere in the world, want their child to have health and educational services. Indeed, there are more than one hundred specialized programs for retarded children and adults in India. How can this all be reconciled?

In the areas of extreme deprivation, handicapped children should be served along with all other children in the mass programs in nutrition, health, and sanitation -- they should not be excluded from such programs merely because of their handicap. Obviously the actual delivery of specialized services for handicapped children in these deprived areas, be they in health or in education, will have to wait, but what is essential is that those charged with the planning and development of education, health, and welfare services for the general population must be aware that, as conditions improve, an increasing number of handicapped children will have to be served, and that it will be more costly and in the long run far less effective to have services develop as a separate, segregated system. In the meantime the services being developed in the cities will fulfill an important function: They can serve as demonstration projects to develop appropriate practices indigenous to the country, as teaching laboratories and study centers, providing knowledge which can later be applied in the more deprived areas.

There are two factors that need to be stressed in thinking about initiation of services for handicapped children. The first is that long before a country of limited means can establish a full service pattern, significant work can be done on a simplified and partial basis. A fully equipped screening mechanism reaching all children ages one, two, and four will for most developing countries be a far distant goal, but good deployment of public health nurses will permit a good bit of partial or pre-screening, and indeed parents can be instructed to watch for certain indicators of trouble ahead, and, when they occur, communicate with the public health nurse or a similar health resource.

UNICEF, in similar fashion, has undertaken in several countries a nutritional program teaching parents good diet ideas for small children, and better utilization of local food resources. Obviously, member associations of the League can be of considerable assistance in such a program. A good example of opportunity for effective parent education would be combating the kind of specific and tragic problem created in developing countries by the promotion (by Nestle or other companies) of dried milk products to the exclusion of breast feeding, although it is not always easy to have a somber warning about probable damage and death compete with the colorful enticement of the commercial corporation.

During this Year of the Child there has been in many aspects a renewed emphasis on the role of the family, both in the area of prevention and early intervention. In many ways, parents can be helped to work with the pre-school handicapped child, avoiding the pitfalls which have occurred in the well-to-do industrialized countries, where for some quite inexplicable reason early intervention was generally neglected until the recent past, and where organized programs started with school age or a bit later. The practical aspect of this is that much of the work in early intervention (avoidance of overprotection, exposure to stimulating experiences, speech encouragement, socializing contacts with other children and with adults) can in most instances be arranged with very modest expense and yet great effectiveness, as compared with the maintenance of large institutions, extensive testing programs, or routine comprehensive diagnostic studies.

Quite obviously here is an opportunity for the League's member societies to demonstrate such services on a limited basis and to push for their adoption by their government, while the League's Secretariat, supported by a relevant Committee, should pursue this matter on the United Nations level.