Published in Gendering Disability. Editors Bonnie G. Smith and Beth Hutchinson, 2004: Rutgers University Press
This paper explores some of the inheritance of the disability movement and suggests areas for further analysis within disability studies. I address in particular the lack of analysis within the disability movement, specifically in terms of its diverse membership and how that narrowness has disturbing implications for disability studies.
The US disability movement had many points of origin–from World War II veterans to the 1950’s mothers of disabled children to the first 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 (in Ryan 2000) points out, “men have dominated the disability movement in Britain, evidenced by a macho-like style in both the political arena and analytical debate. Because the social world is always gendered, a male-led movement centered on structural barriers to accessibility, particularly to work, has left out those related to domestic and family domains. In other words, the social disability movement is sexist.” 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.
Furthermore, 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. Neither poverty nor disability is equally distributed across racial and ethnic lines, and causal relationships exist between poverty (lack of adequate health care, of proper nutrition) and some disabilities. Although only 17.7 percent of the European American population aged 15-64 is disabled, 20.8 percent of the African American population and a startling 26.9 percent of the Native American population have disabilities (Disability Statistics Center 1996). The staff and leadership of the disability movement in the US shows a very different pattern–almost completely white, middle-class, and until recently, male. However, 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 were representatives of all these groups who were important players doing important work for the community without public acknowledgment or equal rewards for their contributions.
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, and 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). For example, 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. Fifty-two 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.” As Peggy McIntosh (1992) points out, “[white people are] given cultural permission not to hear voices of people of other races or a tepid cultural tolerance for hearing and acting on such voices.” Sure enough, of the 52 people selected, 49 were 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.
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). Citing Elizabeth Minnich, McIntosh writes, “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.’” Potential funders are still reluctant to include diversity or outreach initiatives 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 by other disability researchers (Ford & Corbitt 1999; Glenn 1995).
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. One legacy of African American feminist, lesbian, mother, writer, cancer survivor/victim Audre Lorde is to name and claim the multiplicities and contradictions of our lives without shame. As Jim Davis-Rosenthal’s elegy of 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.” Even when collections on disability studies are put into annotated bibliographies, there is no standard format to reference intersecting issues or even a perceived need to inform the reader about the inclusion of diverse perspectives within the original collection. So authors’ and editors’ hard work is often obscured by subsequent chroniclers of the work–obscuring the depth of the writing that is, in fact, available on intersecting issues.
From my perspective as an activist for nearly 30 years, 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 and towards a disability rights paradigm. The writing in this area is extensive. Suffice it for me to say that this is an ongoing battle.
Gaining academic acceptance for the kinds of research encompassed by the term “disability studies” has proved just as problematic. In the early 1990’s Kirk MacGugan was pursuing a second Ph.D., this time in History. Her thesis proposal 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. Nevertheless, 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 the third prong: the need for disability studies to provide useful information by, about and for the disability community. 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: “[her] work issued an implicit charge to researchers everywhere: be explicit in what the standard of ‘normal’ is taken to be and in how this is determined.” 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 to 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 (SDS) meetings in the early 1990’s, both the presenters and the audience were white. At the 2000 SDS meeting in Chicago, most of the presenters and audience were white and about five percent were people of color. At some previous SDS meetings, there were some presentations about disabled people of color–but these were almost always done by white, usually nondisabled presenters.
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. Some 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. Of 12 programs offered nationwide, 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, six classes address women and disability, six classes examine disability and race, and two discuss LGBT (lesbian, gay, bisexual, transgendered people) and disability. For me as a writer and activist on equity issues in disability, this is not an encouraging head count. However, it should be noted that programs at Howard University and the Mississippi Institute for Disability Studies at the University of Southern Mississippi, neither of which was included in the DSQ article, do have specific goals to increase the participation of people of color in leadership and research roles. It will be instructive to monitor their activities and success in addressing those goals.
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). However, Rosemarie Garland Thomson is often the lone voice reminding us that “disability can be included as a category of analysis that parallels and intersects [emphasis 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 do directly impact the results. Studying disability without looking at the intersections of multiple identities results in a very limited perspective about who disabled people are and what they need. The Howard University Research and Training Center (2001) states: “Very few instruments have been constructed and very little data exists which have utilized African Americans with disabilities as the exclusive data source. Often the research utilizes instruments that contain normative data based upon European Americans. This data, at best is often accepted as generalizable to African Americans and other minorities. However, the validity and reliability of the data is highly questionable and often limited in accurately describing the characteristics of this population.” 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 like Audre Lorde, mostly women who are either perceived as nondisabled or who became disabled later in life, will come to mind. But the voices of these members of my community–African American, Native American, Latina and Asian American women who have lived with their disabilities for many years and who do not pass, 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, 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 acknowledged 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 and as keynote speakers, to publish their work widely and to commemorate their contributions to improving our lives and furthering our 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.
I want to end with the wisdom of some quotable women: Peggy McIntosh (1988) states: “Through Women’s Studies work I have met very few men who are truly distressed about systemic, unearned male advantage and conferred dominance. And so one question for me and others like me is whether we will be like them, or whether we will get truly distressed, even outraged, about unearned race advantage and conferred dominance and if so, what will we do to lessen them.”
Simi Linton (1998) writes: “We have come out not with those brown woollen lap robes over our withered legs, or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work–straightforward, unmasked, and unapologetic.”
And the final word from Audre Lorde: “I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood” (Lorde in Sullivan 2001).
Bradsher, Julie E. 1996. Disability among racial and ethnic groups. Disability Statistics Center, Abstract 10.
Davis-Rosenthal, Jim. 1995. An elegy for Audre Lorde, 1992. In Standards, 5(1). Available at: http://www.colorado.edu/journals/standards/V5N1/Lorde/jdrelegy.html
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. Available at: http://www50.pcepd.gov/pcepd/pubs/diverse/glenn.htm
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The Howard University Research and Training Center for Access to Rehabilitation and Economic Opportunity (HURTC). [cited Feb 2001] Overview of Individual Projects available at http://www.law.howard.edu/HURTC/overview.html
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