The Politics of the Disability Rights Movements I

Chuck Grimes cgrimes at tsoft.com
Tue Jun 26 12:32:52 PDT 2001


This is an excerpt from an article Yoshie referred to in a post with the title The Politics of the Disability Rights Movements. It is taken from:

The Politics of the Disability Rights Movements, Ravi Malhotra [from New Politics, vol. 8, no. 3 (new series), whole no. 31, Summer 2001]

``...In fact, it was in Berkeley, a central site of left organizing and home of the famous Free Speech Movement, where the Independent Living (IL) movement emerged. Spearheaded by the Rolling Quads, a group of disabled university students, a new political movement directly controlled by disabled people gained strength...

....THE LIMITATIONS OF THE INDEPENDENT LIVING MOVEMENT, however, quickly became apparent. It saw its role as promoting disabled people's equal rights as consumers within the framework of a free market society. Furthermore, it was not fully representative of the disabled community, often marginalizing the perspectives of disabled women, people of color and gays and lesbians. By limiting itself to accept the restrictions imposed by market forces, it therefore undermined its own radical potential to empower disabled people...''

Full article at: http://www.wpunj.edu/~newpol/issue31/malhot31.htm ---------

I.

Well, that must be from some official, enshrined, probably never amendable, and completely wrong version of history about the movement for disability rights and self-determination here in Berkeley. I can't explain how annoying it is to read poor renditions of events you were part of, so what follows is are two lengthy posting on those events, from my point of view (The Politics of Disability Rights Movements I, II). The first runs four pages the second runs five.

Lets start in about 1968 at UC Berkeley from Cowell Hospital which was the student hospital on campus. I was one of the floor orderlies and worked as an attendent (and also a grad student in the Art Dept) for several other graduate students in wheelchairs who were the French, Poli Sci, History, Law, Sociology, Social Welfare, and several other humanties departments.

There was no independent living movement titled as such, but a series of political battles with Univ of Calif, Berkeley, local landlords, the social welfare system of Ronald Reagan's state government. The Rolling Quads was a UCB student organization formed to give disabled students the appearance of some bogus mass movement with the vague rhetorical charge of `independent living' as a catch all phrase. But its purpose was to pose a political threat, so that in meetings with the state's Department of Vocational Rehabilitation (DVR), the University administration, and with various city and state officials, students could claim to represent a movement---which was of course composed of a hand full of activists and their friends.

Yes the stated objectives of the student group were to promote independent living, and yes the idea was to get out of the University hospital housing that many students were living in. But the big battle was over state money for off-campus housing and academic support services. Rents in Berkeley have always been outlandish and Supplemental Social Security (SSI) was never adequate to cover food, clothing, and housing. Disabled students needed more state money to live in nearby community housing.

DVR paid thousands of dollars a month to the university for housing expenses in Cowell hospital. [This hospital has since been torn down and the Haas Business School now sits on the site---nice architectural irony and monument to the conquest of the welfare state by the subsequently triumphal march of privatizing neoliberalism.]

So the idea was to get at least some of the DVR money turned into housing expenses for off campus living and support services at school. DVR then called the Dept of Vocational Rehabilitation, because its justification for existence was to make disabled people employable, resisted these attempts by the Rolling Quads and others to leave a hospital sitting and take charge of their own living and education needs. A significant part of that resistance was bureaucratic, since DVR could deal with the university system sending them the money without the students ever seeing a nickel. If the students moved out, then any housing expenses or rent subsidies would have to theoretically go directly to the student and DVR was certainly not going to do that. The underlying motivations were also a question of control. From DVR's perspective, a fellow state bureaucracy, the university system, was the controlling agency that received the funds for the food, housing and services and not some unaccountable student. Books, and student registration fees, were paid through a voucher system from DVR to the appropriate UCB administrative unit.

While the Rolling Quads (Herb Willsmore, Judy Taylor, Don Lorence, Cathy Caulfield, Larry Biscamp, circa '68-9) were hassling DVR and UCB, another group (John Hessler, Larry Langdon, Mike Fuss, Jim Donald) were taking a different track to get out of the university hospital and into community housing. They worked on a grant proposal submitted to the Office of Special Services (OSS) in the federal Office of Education (then HEW), to start an academic and special support services project at UCB for disabled students.

[OSS was one arm of what was called the Trio Programs, a part of Johnson's war on Poverty legislative package, and was charged with providing education, academic, and support services to a broad class of disadvantaged students---meaning minority and inner city kids, and rural groups [on the Res, and in the backwoods]---disability was included as a Congressional rider. The Trio Programs included Upward Bound, a program for high school juniors and seniors to prepare for college, Special Services, a program for currently enrolled college students, and Head Start, a program for preparing children for primary school---and the only remaining piece of this original OE package for supporting disadvantaged students in education. All of these programs were systematically destroyed by successive Republican administrations--but it took nearly twenty years and the ever faithful bipartisanship of conservative Democrats to weed them all out.]

The Rolling Quads succeeded in getting some living expenses re-directed to discretionary accounts for rehabilitation counselors to use for extended college and living expenses, but these funds were far less than the thousands spent on UCB housing. The hospital housing itself was turned into an independently funded DVR project with the Rolling Quads as the student advisory/oversight committee setting various administrative policies such as the right to hire, train, and fire attendants, including those paid for by DVR, and put whatever they wanted in their rooms and so forth---ie. make their housing a de facto dorm rather than a floor of the hospital. They also managed to force DVR counselors to work and plan joinly with students to determine their educational goals and objectives, rather than have those impose from above as a matter of fixed policy.

Meanwhile the Special Services grant was funded by OE and the Physically Disabled Students Program (John Hessler, Larry Langdon, Mike Fuss, David Konkel, Zona Roberts, Chuck Grimes, Linda Perotti) was started with the university matching funds in some marginal amount. Very shortly PDSP took over the student/university oversight of the DVR funded Cowell Residence program (Susan O'Hara) as the hospital housing program was then called. The goal at PDSP for Cowell was to change the location of this program from the student hospital to some other university housing alternatives, such as the dorms and co-ops. The university of course strongly resisted this push since it required a variety of expensive modifications to make the other student housing units accessible and make them large enough. The UC administration worked in tandem with the city fire marshal to quash many different campus housing alternatives by arguing that without fire department easy access and evacuation routes many of these hapless shut-ins would burn to death in a fire. [Then governor, Ronald Reagan characterized the Rolling Quads as `hapless shut-ins' in a news conference once. This news item of course brought on howls of derision. Somebody passed around Edward Gorey's illustrated `The Hapless Child' for a few obscene jokes] In any event, this accessible housing battle with the university and the establishment of PDSP lead to the creation of the campus removal of architectural barriers committee (CRAB, Mary Ann Hiserman)--yet another student lead group hassling the UCB administration over access to the whole campus---a real nightmare as far as the administration was concerned.

Through out these struggles each step seemed to spawn another wing of protest, another avenue of pressure, a new long list of yet more demands, and yet another group of political activists. The Chinese government was absolutely right. Once you let one of these people in the first college door, then there is just no end to it.

However, and I have to emphasize `consumerism' was never, ever an ideal, a goal, a policy position, and such a bogus construction never constituted the central theme of these early movements. They were instead entirely devoted to programmatic, institutional, and architectural access---inclusion in the public arena of life---not as a consumer---but as a fundamental human right. Right to education, right to housing, right of access to all the publicly funded programs and services that at that time composed the public sector. This was actually straight out of the Special Services guidelines that stated the goal of the SS projects was to make higher education programatically and institutionally accessible to disadvantaged students.

It was from this political basis, the human right of access to the public sector, that was the foundation for the community based organization called Center for Independent Living (CIL) and lead to the other protests that followed over implementation of the 504 Rehabilitation Act ('72) with its explicit provisions for access to all public accommodations, and all programs and projects receiving federal funds. The linkage was between the concept of federal government funding, the public interest and public access. Since disabled people constituted part of the public, they had the right to access those services and programs that are made available to the public. The big fight centered around architectural barriers in public facilities, access to public education, public sector employment, and mass public transportation. This history mirrors the black civil rights movement's dismantling of Jim Crow---the state laws that barred or limited African American's rights to access public accomdations (same language, same general idea)

The consumerism rhetoric mention in Malhotra's essay was an artifact of much later developments, in particular the lengthy struggles during the 80s leading to the ADA which extended the original ideas behind 504 to apply to all forms of private sector commerce including retail stores, restaurants, businesses, and private sector employment---especially employment. The idea that ADA was a piece of consumer legislation is pretty obnoxiously wrongheaded. On the other hand, the original version of the ADA was much sharply directed and has since been considerably eroded.

It was recognized early (70s) that most jobs, most means to conducting ordinary life were privately held (capitalism) and no amount of federal legislation applied only to federal programs would have much impact on the private sector. Whatever ADA and its limitations, its underlying intent was to guaranty the right of access to the means of reproducing life. ADA together with 540 covered both public and private sectors of the society with what is predominately civil rights legislation.

That the ADA or the local movements involved in these struggles can be twisted around to become a neoliberal formulary for consumerism in a free market is---I don't know what---a complete bastardization of history? The ADA and 504 are not the pinnacle of progressivism, but they are not a neoliberal apologia either.

[This post was split in two parts, because when it was sent as one piece, it didn't get through. The next part deals with a quote from R Malhotra on ADAPT and covers more history]



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