Areas of Agreement -- Work In Progress
A position paper of people who experience mood swings, fear, voices and visions (People Who) developed during 1994/1995 by the subscribers of MADNESS Electronic Discussion List on LISTSERV@sjuvm.stjohns.edu. This is not a document that will ever be finished. It is a start, an ongoing reshaping of how we now agree.
"Nothing about us, without us."
(translation of South African disability movement slogan)
"It is from within our hearts that we can reach out to others."
(from the wisdom of the Cherokee)
Institutionalize human rights; not human beings!
We are a movement of those who bear witness.
We bear witness each to our own experience with madness, to how we have been treated, and to the social consequences we have felt. We bear witness to the common vision and aspirations of people who experience mood swings, fear, voices and visions.
The very first self-help groups were to maintain and sustain. They were formed because there was no treatment but forced treatment. In the late 1960s, as part of a global interest in human rights, the agenda became more political. In the mid 1980s, our radicals -- who truly were core to our movement's creation -- were very concerned when the first U.S.A. government checks started to arrive for us. (The first was for approximately $100,000, and included funding for the first Alternatives conference.) The radicals predicted absorption and control of the movement by the established mental health system and called for refusing to accept such money. Despite this, in the late 1970s the first consumer run, mostly publicly funded, alternatives began. Today, there is an international user movement, a third of the United States have Offices of Consumer Affairs, and we are globally connected. We still are discussing force.
Areas of Concern
Force: Existing force laws violate civil liberties and are obstacles to the creative development of alternatives to embrace those citizens society would exclude.
Voice: There is no individual or group that can speak for us or present us. We re-present and speak for ourselves. Individuals are the experts on their experience both outside the civil rights movement and within it. However, we may vote a position on an issue and delegate a speaker for the stand on that issue in order to present a solid front.
Involvement: Productive community participation and meaningful employment for all who want it is a critical component of acceptable life quality. Participation includes access to cutting edge technology.
Rights: All social services must be fair, varied, voluntary, fully informed, and not contingent. In particular, existing service systems must also offer supports (physical, human, financial, emotional) for those who choose to refuse the recommended treatment. It is not for the state to force the adoption of any particular self- concept. The "right to receive the least restrictive, least harmful treatment that is suitable for you" also means that you consent and may refuse. It is a right of the end user to receive and have access, not of the system to impose. Psychiatric medical records should not be exceptionalized; they should have the same access rules as other medical records.Contractual rights are preserved and not deprived by psychiatric diagnosis.
Respect: Users of social services are to be treated with dignity, decency and respect from peers as well as from providers in all their activities and centers. We encourage more global tolerance of eccentricity. Conforming citizens to social standards with medications is disrespectful. Being different from a norm is distinguishable from disease.
Language: All phrases that include mentally ill objectify and are inherently stigmatizing. Professional use of terms like normal and appropriate measure against a too narrow standard and may mistake a social judgment for a universal, objective truth. Terminology must indicate that there are different interests -- people who use or have used services; and family members, advocates, and other stakeholders.
Research: Every step of a health study's design, implementation, evaluation and dissemination must involve people who are the consented objects of that research.
Policy: The voices of madness must be at least a 51% majority on all policy making and decision making bodies, boards, committees, commissions, councils, ... . Users must control the dollars spent on users. Power must be distributed.
Copyright Sylvia Caras for MADNESS 1994. Revised October 11, 1996