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Nothing about us without us! The Lack of Survivor Representation in U. S. Mental Health Policy I question the lack of significant psychiatric survivor representation in formulation of U.S. mental health policy. Nothing about us without us!
The National Council on Disability touted the report released in June by the Bush mental health commission. However, the report was not a significant advance in the elimination of psychiatric coercion and violence, which NCD had as its top recommendation three years ago in its own report From Privileges to Rights. Eliminating psychiatric violence and coercion is not a luxury that can be postponed for another 25 years till the next presidential mental health commission. It is a matter of guaranteeing our equal fundamental human rights to be free from torture, and from cruel, inhuman or degrading treatment or punishment, to be free from discriminatory detention, and to freedom of thought. These rights cannot wait for changes in public perception or for the availability of voluntary supports. Voluntary supports must be created concurrently with the elimination of legalized torture and discriminatory detention, otherwise they are a sham. NCD has apparently buried From Privileges to Rights and makes no mention of it in its press releases applauding the Bush commission. NCD refers instead to the more moderate report on mental health produced for it by the Bazelon Center, and to the reactionary surgeon general's report on mental health which was denounced by the psychiatric survivor community and our allies when it was released. From Privileges to Rights was written primarily by the only psychiatric survivor ever appointed to NCD, Rae Unzicker. When she died, no replacement was appointed and the new round of appointments omitted a psychiatric survivor representative. On the mental health commission itself, only one of 22 commissioners was a person self-identified as a survivor or person with a psychiatric disability. Dan Fisher worked closely with the psychiatric survivor and consumer communities to get the best work possible done, but the report as a whole could not adequately reflect our community's priorities under these circumstances. People who are familiar with the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities will know that Rule 17 requires a coordinating body on disability policy, in which organizations of people with disabilities will have a considerable influence. In its report to the Special Rapporteur on the Standard Rules, the U.S. claimed that NCD is its coordinating body. Yet it feels free to ignore NCD's report - as does NCD now that there is nobody there for fight for it - and to go ahead and develop mental health policy without significant representation of people from the relevant disability community on the policy-making body. I intend to raise this issue with the new Special Rapporteur on the Standard Rules, if the opportunity comes up to present information on countries' implementation. In the meantime, I want the U.S. disability community to be aware that everything is not as it may seem on the surface. More than this, I want the disability community to question the lack of cross-disability self-representation, whenever it appears and for whatever reason, and not sell out our brothers and sisters for political purposes. The Commission's report has been interpreted as moving away from institutionalization by recognizing that consumers of mental health services can make their own decisions and participate in their own recovery. I hope that this is true, and that the NCD's earlier recommendations may be followed at least in part through this emphasis. The community needs to hold the Bush administration accountable for following through on this aspect of its agenda, but not to stop there and not to accept whatever they claim as "new freedom". Nothing About Us Without Us! Posted Aug, 15, 2003 Tina Minkowitz is a board member of World Network of Users and Survivors of Psychiatry, and a lawyer with knowledge of international human rights. WHAT DO YOU THINK of what you've just read? Click to tell us.
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