The Editor's Perspective

In 1979, the Center on Human Policy, which I currently direct, issued The Community Imperative, a declaration supporting the right of all people with disabilities to community living:

  • In the domain of Human Rights:

    • All people have fundamental moral and consti tutional rights.

    • These rights must not be abrogated merely be cause a person has a mental or physical disability.

    • Among these fundamental rights is the right to  community living.

  • In the domain of Educational Programming and Human Services:

    • All people, as human beings, are inherently valu able.

    • All people can grow and develop.

    • All people are entitled to conditions which foster their development.

    • Such conditions are optimally provided in com munity settings.

Therefore:

In fulfillment of fundamental human rights and in securing optimum developmental opportunities, all people, regardless of the severity of their disabilities, are entitled to community living.

The Center reissued The Community Imperative in 2000 and invited endorsements by individuals and organizations in the field. To date, over 180 professional, self-advocacy, disability, family, and advocacy organizations, including AAMR, The Arc of the United States, and TASH, have endorsed the declaration.

This issue of the Journal contains an exchange of parent perspectives on institutions versus community living. Mary McTernan and Nancy Ward, leaders of Voice of the Retarded (VOR), defend the continued existence of institutions. In separate, invited responses to this commentary, Sue Swenson and Terry Kozloff advocate for the full inclusion of people with disabilities in society.

The Center on Human Policy, which was founded by the late Burton Blatt in 1971, probably represents better than any other organization those who desire “to completely do away with institutions to provide services only in community settings,” as written by McTernan and Ward. Readers might wonder why I, as director of an organization that has advocated for community living for almost 35 years, would accept an article submitted by leaders of the organization that has become the strongest proponent of institutionalization. I suspect that some readers of the Journal will be critical of me for providing a forum for the publication of out-dated, and potentially harmful, views.

When The Community Imperative was first issued, our opinion represented a minority position. Most professionals in the field believed in the need for a full “continuum” of options, ranging from institutions to community settings. Leaders of several national organizations who endorsed the declaration in 1979 were careful to add that they were representing their personal views, not those of their membership. Some leading journals rejected articles consistent with The Community Imperative as too “idealistic” or “ideological.” Now that my views seem to be shared by the majority, or at least the leaders of major organizations, I am not going to use my position as an editor to reject minority opinions.

McTernan and Ward write as parents of people with intellectual disabilities. Parents did not create the institutions. Most parents who placed their sons and daughters in institutions in earlier times did so on the advice of professionals. I am not a parent of a child with intellectual disabilities and do not judge those who made what was surely a difficult decision in years past.

I heard an advocate for new approaches in the field refer to this as the “postinstitutional” era a while back. This is not true. The institutions may be dying, but they are not dead yet. Far too many people with disabilities live in public or private institutions, segregated “community” facilities, and nursing homes. Although I personally believe that the time to debate the place of people with disabilities in society has long since passed, the debate must continue as long as many policymakers and members of the public do not question the appropriateness of institutionalization. This is why I invited Kozloff and Swenson to write responses to the McTernan and Ward article.

Institutions represented a bad idea and were based on a faulty vision. The best way to counter bad ideas and faulty visions is to present better ideas and visions. I believe that Kozloff and Swenson have done just that.—S. J. T.