Voyage on the Arc

RICHARD HADDAD

December 03, 1991|By RICHARD HADDAD

Our children are retarded. Some of them were born with mental retardation as a result of a genetic defect; others suffered it from a birth injury or a childhood illness. Because of their retardation, few of our children will lead a normal life; and our responsibility for them does not end when they become adults.

Naturally, we do whatever we can for our children to make their lives as rich as possible given their disability -- as parents, within our families and communities, and by advocating for them in the society at large.

In our enthusiasm to advocate for them effectively, we sometimes trivialize some important public policy issues. To our shame, we have also permitted the neglect of those of our children whose disability is so severe that it belies the arguments some of us would make that mental retardation is socially irrelevant.

We can be strident. Our zeal may have its roots in vague feelings of guilt concerning our children's disability. Or we may be motivated by anxiety over just about anything from how they will experience the most mundane events of their lives, to serious matters like their vulnerability to abuse and violence, to the big question of who will look out for them when we die. Our energy in advocating for our children may also spring from our desire to offset their disadvantage with special treatment. We may feel that there is almost no cost which would be too high to secure a right or a benefit for them.

Joined by many who volunteer their time on behalf of our children, we have been enormously successful over the past few zTC decades in smashing stereotypes about mental retardation. We

have raised the country's awareness regarding the wasted potential of most retarded people, and have generally improved the quality of their lives.

Through organizations like The Arc (formerly the Association For Retarded Citizens of the U.S.), and with the cooperation of government at all levels, we have effectively dismantled the archaic system whereby all children with mental retardation were automatically segregated into special schools.

We have found ''regular'' jobs for the more able among them and have placed others in specially supervised employment situations. We have established our children in group homes in the community where they live integrated among us as do other adult citizens.

But there have been excesses along with our laudable accomplishments, and there are signs that we may have lost our perspective. Some of us use our children or the issue of mental retardation to advance our favorite social and political causes: care of the homeless (many of whom are retarded), environmentalism (lead in drinking water), even tax reform (for more aid dollars).

We've moved beyond making it possible for children with mental retardation to be educated in neighborhood schools. We now advocate that all retarded children be permitted, even encouraged, to ''mainstream'' educationally, whether or not they would benefit personally, and without much concern for the cost of widespread mainstreaming to the school system. The

principle has become the thing for us.

We insist, on principle, that all retarded people have certain rights to sexual relations and reproduction, including the right to marry. But we have not given much thought to the relationship between degrees of mental retardation and the ability to assume the responsibilities of marriage and child-rearing.

We are also unprepared to discuss the relationship between mental retardation and culpability for criminal behavior, but that did not stop us from successfully lobbying the Maryland General Assembly to exempt retarded individuals from the death penalty.

When we make these leaps in logic and programs on behalf of our children, we leave behind -- with scant attention or funding -- the least able and most vulnerable among them: the severely retarded population. We do this not entirely out of forgetfulness, for we can't credibly ague our position on issues of principle while sharing a platform with them. Our severely retarded children are the obvious problem with our generalizations.

With IQ's of 30 and 20 and lower, they undermine our case for universal educational mainstreaming, for universal sexual rights. Their recognition would force us to deal with where lines should be drawn, how distinctions would be made. We avoid this because such distinctions were once used to discriminate against all retarded people, and we fear a revival of old prejudices.

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