The Independent Living Movement and People with Psychiatric Disabilities: Searching for Common Ground Darby Penney and Ronald Bassman arena. Although activists in the psychiatric disability Introduction movement share similar agendas with people with In this article, the authors draw upon over 50 cognitive, sensory and physical disabilities, they have years’ collective experience as administrators, manag- only recently started to become involved in cross- ers, policy makers, advocates, activists, and service disability alliances and coalitions working on common providers to people with psychiatric disabilities. Their goals. Even within the larger disability rights move- work is informed by values and principles arising from ment, attitudes about people with psychiatric disabili- their personal experiences of being treated in public ties continue to remain mired in misconceptions and and private psychiatric hospitals, their own recovery myths perpetuated by the media and driven by a journeys, and their ongoing work in self-help and paternalistic medical model. And although people with empowerment with people with psychiatric disabilities. psychiatric disabilities have the same desire as people The authors explore the relationship between with other disabilities to fully participate in the commu- the larger disability rights movement and the movement nities in which they choose to live, the lack of signifi- for the rights of people with psychiatric disabilities, as cant public contact with this group allows the myths to well as the largely unrealized potential for Independent continue, and the potential for societal change to be Living Centers (ILCs) to assist people with psychiatric unrealized. A meta-analysis of the research on stigma disabilities. Independent Living Centers are local (Corrigan & Penn, 1999), shows that of three inter- non-profit, consumer-controlled, community-based ventions used to try to reduce stigma, (1) challenging organizations that provide information, services and mis-information and stereotypes, (2) education, and advocacy by and for people with disabilities, with the (3) contact with members of the stigmatized group, the goal of helping people with disabilities to achieve third is clearly the most effective. Yet people with maximum independence and self-determination psychiatric disabilities, even those living outside of (Independent Living Centers USA, 2003). ILCs offer institutions, remain an invisible minority to most a clear alternative to impairment-based treatment Americans. systems for people with a range of disabilities, and In this article, the authors describe what they would seem like an ideal resource for people with have learned from conducting interviews with execu- psychiatric disabilities who are trying to throw off their tive directors and staff of Independent Living Centers, “mental patient” roles and integrate back into their from facilitating day-long dialogues between ILC staff communities. While data are not collected in a manner and people with psychiatric disabilities in which both that provides precise information about how many groups discussed their needs, goals, experiences and people with psychiatric disabilities currently use ILC thoughts about how they might more effectively work services, the authors’ work to bridge the gap between together, and from the response to a presentation of these two movements, described below, leads them to their work at the National Independent Living Council believe that people with psychiatric disabilities are annual conference in 2002. The workshop, which seriously under-served by ILCs. This article will was targeted to ILC administrators and staff, was address the possible reasons for this situation, and will enthusiastically received by participants who signed up make recommendations to help both ILCs and people to receive information updates on further educational with psychiatric disabilities work together more and training opportunities. successfully. People with psychiatric disabilities are the History of Disability Activism in the United States single largest disability group in the United States While modern disability rights movements in (WHO, 1999), yet they lag behind other disability the United States are generally understood to have groups in becoming an effective force in the political started in the 1960s and 70s, ( Pfeiffer, 2003; 1 had dormitories at the University of Illinois at McDonald & Oxford, 1998), the history of disability Champaign-Urbana made accessible for mobility- activism can be traced back to the 1850s, when deaf impaired veterans in 1946. In 1962, the University’s people organized local groups to advocate for their disabled students program became a pioneer in interests (Mountain State Centers for Independent facilitating community living for people with physical Living, 2000). During the 1930s, an era of social disabilities, when four severely disabled students were activism on many fronts, people with physical disabili- transferred from a nursing home to a modified home ties, including disabled World War I veterans, were closer to campus (DeJong, 1979). Edward Roberts, a among those who organized to demand their rights. wheelchair user, became the first severely physically Historian Paul Longmore (2000) cites the establish- disabled student to live on campus at the University of ment of the League of the Physically Handicapped in California at Berkeley; the Berkeley Gazette an- New York City in 1935, and a sit-down strike by nounced his arrival in 1963 with the headline “Helpless blind employees of a Pittsburgh sheltered workshop in cripple attends classes at UC” (O’Hara, 2000). 1937, as forgotten examples of early disability activ- Roberts, who went on to become the first person with ism. a disability to serve as Director of the California The League of the Physically Handicapped, Department of Rehabilitation, organized other students which had several hundred members at its peak, held who used wheelchairs on the Berkeley campus; the a sit-in at the local office of the Emergency Relief group took the name “The Rolling Quads”(Mountain Bureau to protest the Bureau’s refusal to refer people State Centers for Independent Living, 2000). In with disabilities to the Works Progress Administration 1972, he was a founder of the Center for Indepen- for employment. According to Longmore (2000), the dence (CIL) in Berkeley, the first such organization in group’s “...actions included picket lines and demon- the country, and is seen as the primary mover behind strations and league members spoke to labor unions what came to be known as the Independent Living and progressive organizations in an attempt to educate Movement (McDonald & Oxford, 1998). The Berke- these groups on disability issues. Like many groups ley CIL was based on three principles grounded in the struggling for economic and social justice the League daily experience of people with disabilities: of the Physically Handicapped was accused of being 1. Those who best understand the needs of “reds.” Blind workers at sheltered workshops made disabled people and how to meet those needs several unsuccessful attempts to win collective bar- are disabled people themselves; gaining rights during the 1930s; the sit-down strike in 2. Disabled people’s needs can be met most Pittsburgh was one of a number of local actions. effectively by programs which provide a Longmore (2000) notes that “the local press seemed variety of services, rather than having to go to more impressed with the ‘oddity’ of the event than several different agencies for services; with the fact that a group of disabled workers were 3. Disabled people should be as integrated as angry enough to organize a militant rank and file job possible into the community. (Zukas, 1979). action in their place of employment.” While militancy ended with the start of World Independent Living: A Philosophy and a Movement War II, disability organizing continued. The National The independent living paradigm, as described Federation of the Blind and the American Federation by Gerben DeJong (1979), sees problems or of the Physically Handicapped were organized in the “deficiencies” in society’s response to people with early 1940s. In aftermath of World War II, returning disabilities, rather than in the individual with a disabled veterans founded the Paralyzed Veterans of disability. The IL philosophy emerged in response to America. (Mountain State Centers for Independent the rehabilitation model, which disability rights activists Living, 2000). saw as dependency-inducing, as well as to other The next phase of physical disability activism barriers in the physical and social environment. To had its roots on university campuses. David Pfeiffer cope with social and environmental barriers, the IL (2003) cites the early example of Ted Nugent, who philosophy holds that the disabled person must shed 2 to the Rehabilitation Act required IL Centers to have a the patient role in order to achieve independence. majority of people with disabilities on their boards of Advocacy, peer counseling, self-help, consumer directors, a provision which ensured that IL Centers control, and barrier removal are the trademarks of the were consumer-run (Shreve, 1982). In the 1990s, this IL paradigm. (Brown, 2000; McDonald & Oxford, provision was expanded to include IL Center 1998). management as well (Brown, 2000). The IL movement stresses that social and attitudinal During the 1980s, the IL movement continued barriers, not disabling conditions,