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WHO
SAID IT WAS SIMPLE
There
are so many roots to the tree of anger Sitting
in Nedicks But
I who am bound by my mirror and
sit here wondering by audre lorde |
| This
paper explores some of the inheritance of the disability movement and suggests
areas for further analysis within disability studies. Today I will particularly
address the lack of analysis within the disability movement, specifically
in terms of its diverse membership and how that narrowness has concerning
implications for disability studies.
IMPORTANCE
OF THE ISSUE: The US disabled population is very racially mixed. Numerous studies have shown us that as poverty increases, so does the number of people with disabilities. Because poverty is not equally distributed across racial and ethnic lines, disability is not either. Analysis of data shows: (Disability Statistics Center 1996) Disability rate by ethnicity for people ages 15-64. ETHNICITY
Yet a similar analysis of the staff and leadership of the disability movement in the US shows a very different pattern. It is interesting to note, that as the disability movement has aged, the top positions have moved from being primarily white men to primarily white women but that there has not been any systemic interest in analyzing how disability might have a differential impact based on gender. The US disability movement had many points of origin - from the World War II veterans to the 1950's mothers of disabled children to the formation of the Centers for Independent Living in the 1970's. But by 1980 the disability movement presented an image to the world as white people primarily men, presumably heterosexual who used mobility devices, most often wheelchairs. This standardized myth is not limited to the US. As British writer Carol Thomas (1999) points out that
In each of the early historical shifts of the disability movement there were women, people of color, gays and lesbians and others who did not fit the proffered stereotype. Evident in anecdotal accounts and early writings on the lived disability experience is that there were representatives of all these groups who were important players doing important work for the community but they were not being publicly acknowledged or allowed equal benefits or recognition for their contributions. POSITIVE AND NEGATIVE LEGACIES OF THAT MOVEMENT The impact of the unwelcome, pervasive, perhaps even insidious, myth of the white, straight, man in a wheelchair is evident in personal accounts, essays and in the professional literature of disability scholars. People who have deviated from this mythic image often found themselves ostracized within the disability movement. The University of California at Berkeley's Regional Oral History Project undertook a massive effort to document the early history of the disability movement in Berkeley. The principal decision-makers were all white and were part of the disability movement of the 1970's and 1980's. In November 2000, a conference was held to announce the completion of the project. 52 people were chosen for this permanent tribute - their oral histories of the disability movement to "live forever as an insider's record of that important time." Of the 52 people selected were 49 white, 2 were African-American, and 1 was Hispanic. Among these recipients, only one of the total spoke about the roles that women played or of the presence of lesbians within the early the disability movement. The framework of disability during the 1970's produced many great achievements and outcomes - national legislation on disability rights, bringing people with disabilities to the living rooms of America, increasing public access, increasing integration. These gains are an astounding tribute to years of dedicated hard work. And the hard work of these people, particularly the white men, has been extensively documented. (Shapiro 1994) Research shows that those who have benefited the most from these advances have been those whose needs were the most parallel to the mythic disabled man. (Linton 1998; Fine & Asch 1988) Researchers still encounter barriers finding funding for diversity in either research or community efforts because of the overriding assumption that what is good for this mythic man is good for all people with disabilities (Thomson 1999). Research that focuses on, or significantly includes, disabled people of color is often marginalized by both funders and other disability researchers (Pichette et al 1997; Trevino & Symanski 1996; Glenn 1995) Even when collections on disability studies are put into annotated bibliography, there is no standardization of how to reference intersecting issues or even a perceived need to inform the reader about the availability of diversity within the original material. So the original author or editor's hard work is often obscured by subsequent chroniclers of the work - obscuring the depth of the writings that is, in fact, available on intersecting issues. DISABILITY STUDIES CHALLENGES TO DISABILITY STUDIES From my perspective as a nearly 30 year activist, the disability studies movement has three consistent challenges: bringing the disability rights model into the academy; bringing an academic lens to disability; and providing useful information by, about and for the disability community. Much of early disability studies focused on the first problem - how to move universities away from a medical model of disability. The writing in this area is extensive. Suffice it for me to say that this is an ongoing battle. The second area is just as problematic. In the early 1990's Kirk MacGugan was pursuing a second PhD, this time in History. Her thesis proposal, which was on the history of the disability rights movement from 1917-1947, was rejected because, in the words of her committee "There is no disability history". Thankfully, subsequent disability studies scholars have proved them wrong. Although any review of the attempts to do research on disability - AND having it viewed as a valuable academic contribution - is full of stories of struggle and arm-twisting. The area that concerns me the most is this third prong: the need for disability studies to provide useful information by, about and for the disability community. One elegy of Audre Lorde reminds us: "The words we are still arguing over including -- bisexual, heterosexism, [cancer], erotic; the words so many of us can't manage to include in the names of our organizations, our speech, our writing, appeared in her essays unproblematically [in the 1970's]. Her writing has been so important to so many people because she taught us to transform our silence into power because our fears will not prevent our deaths." (Davis-Rosenthal 1992) We all undoubtedly have stories from different disciplines about a researcher with an "insider's" perspective who provided an entirely new lens for challenging what was considered an existing "fact". I believe that any successful reframing of an oppressive idea or practice, without regard to discipline, will have a resounding and ultimately beneficial impact on people with disabilities. In
discussing Carol Gilligan, Nancy Rice (2000) writes:
Gilligan's challenge to "be explicit in what the standard of "normal" is taken to be and in how this is determined" has deep resonance with disability studies. Our scholarship is often eager challenge the medical model's definition of disabled people but is usually less eager to explore the larger tapestry of issues that relate to age, gender, race and sexual orientation. When I first attended the Society for Disability Studies meetings in the early 1990's, both the presenters and the audience were white. At the SDS meeting in Chicago last year, most of the presenters and the audience were white, and about 5% were people of color. At some previous SDS meetings, there were some presentations on disabled people of color - but these were almost always presentations done by white, usually nondisabled presenters. WHAT IS INCLUDED IN DISABILITY STUDIES? I understood this problem far better when I did a chart of what is being taught under the title "Disability studies". It is both very exciting and very troubling to look at the programs and courses offered under the name disability studies. Some of these sound remarkably similar to the courses offered as basic training for service providers in different fields. But there are some remarkable strides being made. Using information from the Winter 2000 issue of the Disability Studies Quarterly, and restricting my review to programs based in the U.S. or Canada, I found this pattern. There are 12 programs. Of these, only one has a specific focus to include women and disability issues and only one addresses specific issues related to people of color with disabilities (University of Hawai'i at Manoa) There are 53 classes offered at 31 universities. Of these, 6 classes address women and disability, six classes examine disability and race, and 2 classes discuss LGBT and disability. It is interesting to note that 2 programs, one at Howard University and one at the Mississippi Institute for Disability Studies at the University of Southern Mississippi (Hattiesburg, Mississippi) (http://www-dept.usm.edu/~ids/) also have a specific goal to increase the participation of people of color in leadership and research roles. But neither was included in the SDS article. For me as a writer and activist on equity issues in disability, this is not an encouraging head count. Non/DISCUSSION OF -ISMS IN DISABILITY STUDIES There is literature discussing how disability studies is "like" ethnic or women's studies, but surprisingly little discussion of how disability studies is "including" women and people of color (Preston 2001). As one writer points out "disability studies borrows from many fields and movements, including cultural studies, area studies, feminism, race-and-ethnic studies, and gay-and-lesbian studies." (Monaghan 1998) I would now like to draw attention to what I believe is needed for the next step of our action evolution. Rosemarie Garland Thomson is often the lone voice reminding us that "disability can be included as a category of analysis that parallels and intersects [emphais mine] gender, race, ethnicity and class". Bodies of literature found in many oppressed communities also document that when people outside the community do research, the results often miss important components of community life that can and often does directly impact the results. Studying disability without looking at the intersections of multiple identities results in a very limited perspective of who disabled people are and what they need. The
Howard University Research and Training Center (2001) states: And
Peggy McIntosh (1992) points out: Elizabeth Minnich has pointed out: "whites are taught to think of their lives as morally neutral, normative, and average, and also ideal, so that when we work to benefit others, this is seen as work that will allow "them" to be more like "us."" Feminist disability scholars such as Harilyn Rousso, Rosemarie Thomson, Simi Linton, and Cheryl Green remind us that it is a mistake to think that the complexity of disability experience can be understood independent of other aspects of our lives. I had a hard time finding disabled women of color that I admire that you would also know. A few women, mostly women who either are perceived as nondisabled or who became disabled later in life, are recognizable. But my community, those women who have lived with their disabilities for many years, women who do not pass, their voices, while loud in my ears, are but whispers on the wind for the rest of society. Do you know LaDonna Fowler who is leading a struggle for recognition on tribal lands? Do you know Sylvia Walker who runs a large research and training center that investigates the intersecting issues for disabled people of color? Do you know Atsuko Kuwana who builds information bridges across the Pacific Ocean so that people in the US and Japan know about their struggles? Do you know Kathy Martinez who is the probably the most successful organizer of disabled women's gatherings worldwide? These women, and thousands others, are the voices that remain invisible even in disability and women's studies. They are invisible because those of us with access to these academic gatherings have not formally acknowledge their work as vital to the survival and growth of our culture, as vital and as necessary as the efforts that we so passionately and proudly pushed forth in the beginning of the disability movement. We need to look at ways to support them, invite them to speak as equal voices, as key notes, publish and work widely and commemorate their contributions to improving our lives and furthering out dreams - not as a one-size-fits-all covering, but as a representation of the richly complex community that we are. One of the great things about the history of disability studies is that it took the basic premises of the early disability movement and built on it. One of the worst things about disability studies is that it took the basic premises of the disability movement and built on it. We have to accept and refer to both aspects of our inheritance if we are to make the necessary changes for the growth of our community, and for the future of our disabled children in all their diversity.
Audre
Lorde states: Simi
Linton (1998) states: Peggy
McIntosh (1988) states: And
the final word from Audre Lorde: REFERENCES From a DSQ Winter 2001, vol 21, no 1 review: Buchanan, Robert. Illusions of Equality: Deaf Americans in School and Factory: 1850-1950. Washington, DC: Gallaudet University Press, 1999, 218 pages, $39.95 hardcover. Reviewed by Paul Preston, Through the Looking Glass, National Resource Center for Parents with Disabilities, Berkeley, CA Rosemarie
Garland Thomson (2000) Incorporating Disability Studies into American
Studies
Rosemarie Garland Thomson (1999) "The New Disability Studies: Tolerance
or Inclusion", ADFL Bulletin, 31, no. 1 (Fall 1999): 49-53 Peter Monaghan, "Pioneering Field of Disability Studies Challenges Established Approaches and Attitudes". Chronicle of Higher Education, January 23, 1998 http://www.uic.edu/orgs/sds/#chron/
Audre Lorde 2001p New York State Writer's Institute, State University
of New York, accessed Feb. 2001 Glenn, Eddie. (1995) African American Women with Disabilities: An Overview. In Disability and Diversity: New Leadership for a New Era. Published by the President's Committee on Employment of People With Disabilities in collaboration with the Howard University Research and Training Center. January 1995 http://www50.pcepd.gov/pcepd/pubs/diverse/glenn.htm Pichette,
Eugene F.; Berven, Norman L. Menz, Fredrick E. Trevino,
Beatriz.; Szymanski, Edna Mora. Audre Lorde (2001e) in Tom Sullivan's Essay File accessed Feb. 2001 http://www.lambda.net/~maximum/lorde.html
Jim Davis-Rosenthal,(1992) An Elegy for Audre Lorde, 1992 in Standards,
Volume V, Number 1: Fall, 1995 The
Howard University Research and Training
Center for Access to Rehabilitation and Economic Opportunity (HURTC),
Overview of Individual Projects, accessed Feb 2001 Simi Linton (2000) Trans-Atlantic Commerce. Disability & Society, Vol. 15, No. 4, pp 699-703 From Disability Among Racial and Ethnic Groups. Disability Statistics Center, Abstract 10 by Julie E. Bradsher, Jan. 1996) Book review of Carol Thomas, FEMALE FORMS: EXPERIENCING AND UNDERSTANDING DISABILITY. Buckingham, England: Open University Press, 1999 As published in: Feminist Collections: A Quarterly of Women's Studies Resources 07-31-2000 V.21; N.4 p. 4] http://www.library.wisc.edu/libraries/WomensStudies/fcmain.htm WHAT
IS DISABILITY STUDIES, AND WHAT DOES IT HAVE TO DO WITH FACILITATED COMMUNICATION?
Nancy Rice, Facilitated Communication Institute, Facilitated Communication
Digest, Vol 8, No 2, Mar.00, 2-8. Peggy McIntosh (1992) White Privilege and Male Privilege: A Personal Account of Coming to See Correspondences Through Work in Women's Studies. In Margaret L. Anderson and Patricia Hill Collins (Eds.) Race, Class and Gender: An Anthology. Belmont, CA: Wadsworth Publishing Company. Pp. 70-81 No Pity : People With Disabilities Forging a New Civil Rights Movement by Joseph Shapiro, New York: Times Books, 1994. |