The National Council on Disability (NCD), an independent federal agency which reports to the President and Congress, recently released a landmark report entitled From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves.(240K) The report, based on testimony taken at a special NCD hearing in Albany, NY in 1998, clearly illustrates the victimization, humiliation, and rights abuses routinely faced by people with psychiatric labels, and makes recommendations for rectifying what the report calls " a national emergency and a national disgrace."
The report states that "NCD heard testimony graphically describing how people with psychiatric disabilities have been beaten, shocked, isolated, incarcerated, restricted, raped, deprived of food and bathroom privileges, and physically and psychologically abused in institutions and in their communities. The testimony pointed to the inescapable fact that people with psychiatric disabilities are systematically and routinely deprived of their rights, and treated as less than full citizens or full human beings."
Despite the urgency of this situation, this major report on a vital human and civil rights issue has gotten virtually no national media attention - most Americans are probably not even aware it exists. Yet for people with psychiatric histories, and for their friends and allies, this is the most important report that has ever been issued by a federal agency.
This report is important for several reasons. First, this is the only report NCD has ever issued that focuses on the plight of individuals with a particular disability. The work of the NCD has traditionally been cross-disability work; that is, its work is usually focused on broad issues which affect people with all kinds of disabilities. But through the educational efforts of its first (and so far, only) member with a psychiatric disability, Rae Unzicker, the NCD became aware of the unique problems that face people with psychiatric histories, particularly in the area of rights protection. Their growing concern about these issues prompted them to hold a special public hearing in Albany in conjunction with the 1998 conference of the National Association for Rights Protection and Advocacy (NARPA), to learn first-hand from people with psychiatric disabilities about the problems they face.
The fact that the report relies heavily on the direct testimony of people who have experienced rights abuses due to their disability status makes this report unique. The vivid, often painful stories of people that are quoted in the document give it an urgency and immediacy that government reports often lack. For many people who testified, this was the first time anyone had ever listened respectfully to them, and the experience was cathartic and healing as well as educational. This report is important because it is the first time that a high-level federal agency has given voice directly to people with psychiatric histories and let their own words demonstrate the desperate need for new and stronger rights protection. The report graphically demonstrates how much remains to be done to ensure the full human and civil rights of people with psychiatric diagnoses.
According to NCD chairwoman, Marca Bristow, people with psychiatric histories "remain among the most underprivileged and disadvantaged of American citizens." In a letter to the President which accompanied the report, Ms. Bristow summarizes the NCD's findings by stating that "people with psychiatric disabilities are routinely deprived of their rights in a way no other disability group has been." The letter goes on to point out that "all laws and policies that restrict the rights of people with psychiatric disabilities simply because of their disabilities are inharmonious with basic principles of law and justice, as well as with such landmark civil rights laws as the Americans with Disabilities Act." The NCD letter calls on the President, Congress and the states to take direct action to address the problems described in the report, "particularly by ensuring that people with psychiatric disabilities themselves are involved in a major way in making the policy changes that will enable them to claim their full citizenship rights."
The NCD report makes ten major policy recommendations designed to remedy these problems, quoted as follows in their entirety:
Laws that allow the use of involuntary treatments such as forced drugging and inpatient and outpatient commitment should be viewed as inherently suspect, because they are incompatible with the principle of self-determination. Public policy needs to move in the direction of a totally voluntary community-based mental health system that safeguards human dignity and respects individual autonomy.
People labeled with psychiatric disabilities should have a major role in the direction and control of programs and services designed for their benefit. This central role must be played by people labeled with psychiatric disabilities themselves, and should not be confused with the roles that family members, professional advocates, and others often play when "consumer" input is sought.
Mental health treatment should be about healing, not punishment. Accordingly, the use of aversive treatments, including physical and chemical restraints, seclusion, and similar techniques that restrict freedom of movement, should be banned. Also, public policy should move toward the elimination of electro-convulsive therapy and psycho surgery as unproven and inherently inhumane procedures. Effective humane alternatives to these techniques exist now and should be promoted.
Federal research and demonstration resources should place a higher priority on the development of culturally appropriate alternatives to the medical and biochemical approaches to treatment of people labeled with psychiatric disabilities, including self-help, peer support, and other consumer/survivor-driven alternatives to the traditional mental health system.
Eligibility for services in the community should never be contingent on participation in treatment programs. People labeled with psychiatric disabilities should be able to select from a menu of independently available services and programs, including mental health services, housing, vocational training, and job placement, and should be free to reject any service or program. Moreover, in part in response to the Supreme Court's decision in Olmstead v. L C., State and federal governments should work with people labeled with psychiatric disabilities and others receiving publicly-funded care in institutions to expand culturally appropriate home and community-based supports so that people are able to leave institutional care and, if they choose, access an effective, flexible, consumer/survivor-driven system of supports and services in the community.
Employment and training and vocational rehabilitation programs must account for the wide range of abilities, skills, knowledge, and experience of people labeled with psychiatric disabilities by administering programs that are highly individualized and responsive to the abilities, preferences, and personal goals of program participants.
Federal income support programs like Supplemental Security Income and Social Security Disability Insurance should provide flexible and work-friendly support options so that people with episodic or unpredictable disabilities are not required to participate in the current "all or nothing" federal disability benefit system, often at the expense of pursuing their employment goals.
To assure that parity laws do not make it easier to force people into accepting "treatments" they do not want, it is critical that these laws define parity only in terms of voluntary treatments and services.
Government civil rights enforcement agencies and publicly-funded advocacy organizations should work more closely together and with adequate funding to implement effectively critical existing laws like the Americans with Disabilities Act, Fair Housing Act, Civil Rights of Institutionalized Persons Act, Protection and Advocacy for Individuals with Mental Illness Act, and Individuals with Disabilities Education Act, giving people labeled with psychiatric disabilities a central role in setting the priorities for enforcement and implementation of these laws.
Federal, state, and local governments, including education, health care, social services, juvenile justice, and civil rights enforcement agencies, must work together to reduce the placement of children and young adults with disabilities, particularly those labeled seriously emotionally disturbed, in correctional facilities and other segregated settings. These placements are often harmful, inconsistent with the federally-protected right to a free and appropriate public education, and unnecessary if timely, coordinated, family-centered supports and services are made available in mainstream settings.
These recommendations will never be more than inspiring words on paper unless the President, Congress, and state governments hear from large numbers of people across the country who demand that this report be responded to seriously. The full text of the report can be found at the MadNation website (www.madnation.org), at the NCD's own award-winning website (www.ncd.gov/newsroom/publications/publications.html), or can be ordered from National Council on Disability, 1331 F Street, NW, Suite 1050, Washington, DC 20004, phone: (202) 272-2004.
Get it, read it, share it with others, and let public officials know you want them to respond to it.