Mental Retardation and Society: The Ethics and Politics of Normalization

Abstract

During the sixties, social critics visited institutions for the retarded and were shocked by the conditions they found. Scholarly research supported the conclusions of lay observers. Consensus was easy: people saw conditions that everyone believed were bad, and all agreed that policies should change. Only a small percentage of the retarded were in institutions or helped by specialized public programs, and many had been excluded from school. Care was inadequate both because it was of low quality and because many of the retarded received no services. Social critics were allied not only with scholarly experts but with many who had a deep personal interest in programs for the retarded. Both parents and professionals who cared for the retarded sought changes in treatment and educational methods and increases in public funding. The key slogans were deinstitutionalization, normalization, mainstreaming, and a developmental model of care. This consensus is now falling apart. As shock and outrage are translated into particular programmatic changes, public policy toward the retarded has once again become a difficult and controversial issue. The retarded, their parents, and their professional advocates are only a small minority of the population. The severely and profoundly retarded are an even smaller group. To change policy, the minority must generate support from the general public. Sympathy, however, is easier to obtain than tax dollars and private monetary donations. This places activists for the mentally retarded in a difficult position. A clear, simple message is easier to use as a rallying cry than a balanced and complicated assessment of the relative merits of alternative policies. The principles of normalization and deinstitutionalization would, however, be expensive if consistently translated into policy. Even the most impassioned advocates may be forced to lay aside principle in the competition for funds. Under the pressure of scarce resources, cracks appear in the alliance of legal activists, mental retardation professionals, and parents. The tensions not only represent clashes between private interests and moral principles but also reveal fundamental philosophical disagreements. The debate, however, has seldom moved behind the slogans to examine the underlying premises of the normalization movement.