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- Do not change a thing.
- Do not address ethnicity, rather continually focus on race.
- Do not consider that, as Stuart Hall has explained, “Cultural identity is not an essence but
2. Personal conversation with Paul Longmore, San Francisco, CA, June 2000. Works Cited Americans with Disabilities Act of 1990. Retrieved 15 August 2002, from http://www.usdoj.gov/crt/ada/pubs/ada.txt. Aristotle. 1944. Generation of Animals. Trans. A.L. Peck. Cambridge: Harvard UP. Asch, Adrienne, and Gail Geller. 1996. “Feminism, Bioethics and Genetics.” In Feminism, Bioethics: Beyond Reproduction, ed. S.M. Wolf, 318–50. Oxford: Oxford UP. Battin, Margaret P., Rosamond Rhodes, and Anita Silvers, eds. 1998. Physician Assisted Suicide: Expanding the Debate. New York: Routledge. Bordo, Susan. 1994. “Reading the Male Body.” In Th e Male Body, ed. Laurence Goldstein, 265–306. Ann Arbor: U of Michigan P. ———. 1993. Unbearable Weight: Feminism, Western Culture and the Body. Berkeley: U of California P. Braidotti, Rosi. 1994. Nomadic Subjects: Embodiment and Sexual Diff erence in Contemporary Feminist Th ought. New York: Columbia UP. Brownsworth, Victoria A., and Susan Raff o, eds. 1999. Restricted Access: Lesbians on Disability. Seattle: Seal Press. Butler, Judith. 1993. Bodies that Matter. New York: Routledge. ———. 1990. Gender Trouble. New York: Routledge. Bynum, Caroline Walker. 1999. “Shape and Story: Metamorphosis in the Western Tradition.” Paper presented at NEH Jeff erson Lecture. 22 March, at Washington, DC. Clark, David L., and Catherine Myser. 1996. “Being Humaned: Medical Documentaries and the Hyperrealization of Conjoined Twins.” In Freakery: Cultural Spectacles of the Extraordinary Body, ed. Rosemarie Garland Th omson, 338-55. New York: New York UP. Davis, Lennard. 1995. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso. De Beauvoir, Simone. (1952) 1974. Th e Second Sex. Trans. H.M. Parshley. New York: Vintage Press. Dreger, Alice Domurat. 1998a. Hermaphrodites and the Medical Invention of Sex. Cambridge: Harvard UP. ———. 1998b. “Th e Limits of the Individuality: Ritual and Sacrifi ce in the Lives and Medical Treatment of Conjoined Twins.” In Freakery: Cultural Spectacles of the Extraordinary Body, ed. Rosemarie Garland Th omson, 338–55. New York: New York UP.
Eiesland, Nancy. 1994. Th e Disabled God: Toward a Liberatory Th eology of Disability. Nahsville: Abingdon Press. Fausto-Sterling, Anne. 2000. Sexing the Body: Gender Politics and the Construction of Sexuality: New York: Basic Books. ———. 1995. “Gender, Race, and Nation: Th e Comparative Anatomy of Hottentot Women in Europe, 1815–1817.” In Deviant Bodies: Cultural Perspectives in Science and Popular Culture, eds. Jennifer Terry and Jacqueline Urla, 19–48. Bloomington: Indiana UP. Fine, Michelle, and Adrienne Asch, eds. 1988. Women with Disabilities: Essays in Psychology, Culture, and Politics. Philadelphia: Temple UP. Finger, Anne. 1990. Past Due: A Story of Disability, Pregnancy, and Birth. Seattle: Seal Press. Fiske, Susan T., Amy J. C. Cuddy, and Peter Glick. 2001. “A Model of (Oft en Mixed) Stereotype Content: Competence and Warmth Respectively Follow from Perceived Status and Competition.” Unpublished study. Foucault, Michel. 1979. Discipline and Punish: Th e Birth of the Prison. Trans. Alan M. Sheridan-Smith. New York: Vintage Books.
Gilman, Sander L. 1999. Making the Body Beautiful. Princeton: Princeton UP. ———. 1998. Creating Beauty to Cure the Soul. Durham: Duke UP. ———. 1985. Diff erence and Pathology: Stereotypes of Sexuality, Race, and Madness. Ithaca: Cornell UP. Hahn, Harlan. 1988. “Can Disability Be Beautiful?” Social Policy 18 (Winter): 26–31. Haiken, Elizabeth. 1997. Venus Envy: A History of Cosmetic Surgery. Baltimore: Johns Hopkins UP. Haraway, Donna. 1991. Simians, Cyborgs, and Women. New York: Routledge. Harstock, Nancy. 1983. “Th e Feminist Standpoint: Developing the Ground for a Specifi cally Feminist Historical Materialism.” In Discovering Reality, eds. Sandra Harding and Merrell Hintikka, 283–305. Dortrecht, Holland: Reidel Publishing. Herndl, Diane Price. 2002. “Reconstructing the Posthuman Feminist Body: Twenty Years aft er Audre Lorde’s Cancer Journals.” In Disability Studies: Enabling the Humanities, eds. Sharon Snyder, Brenda Brueggemann, and Rosemarie Garland-Th om-
son, 144–55. New York: MLA Press. Hillyer, Barbara. 1993. Feminism and Disability. Norman: U of Oklahoma P. RT3340X_C021.indd 272 RT3340X_C021.indd 272 7/11/2006 10:06:39 AM 7/11/2006 10:06:39 AM 273 Integrating Disability, Transforming Feminist Theory Hubbard, Ruth. 1990. “Who Should and Who Should Not Inhabit the World?” In Th e Politics of Women’s Biology, 179–98. New Brunswick: Rutgers UP. Keller, Evelyn Fox. 1992. “Nature, Nurture and the Human Genome Project.” In Th e Code of Codes: Scientifi c and Social Issues in the Human Genome Project, eds. Daniel J. Kevles and Leroy Hood, 281–99. Cambridge: Harvard UP. Kessler, Suzanne J. 1990. Lessons from the Intersexed. New Brunswick: Rutgers UP. Kittay, Eva Feder. 1999. Love’s Labor: Essays on Women, Equality, and Dependency. New York: Routledge. Kittay, Eva, with Leo Kittay. 2000. “On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son.” In Prenatal Testing and Disability Rights, eds. Erik Parens and Adrienne Asch, 165–95. Georgetown: Georgetown UP. Linton, Simi. 1998. Claiming Disability: Knowledge and Identity. New York: New York UP. Longmore, Paul K. 1997. “Conspicuous Contribution and American Cultural Dilemmas: Telethon Rituals of Cleansing and Renewal.” In Th e Body and Physical Diff erence: Discourses of Disability, eds. David Mitchell and Sharon Snyder, 134–58. Ann Arbor: U of Michigan P. Lorde, Audre. 1980. Th e Cancer Journals. San Francisco: Spinsters Ink. Mairs, Nancy. 1996. Waist High in the World: A Life Among the Disabled. Boston: Beacon Press. McRuer, Robert. 1999. “Compulsory Able-Bodiedness and Queer/Disabled Existence.” Paper presented at MLA Convention, 28 December, at Chicago, IL. “Meet Ellen Stohl.” 1987. Playboy. July: 68–74 Morrison, Toni. 1992. Playing in the Dark: Whiteness and the Literary Imagination. Cambridge: Harvard UP. Parens, Erik, and Adrienne Asch. 2000. Prenatal Testing and Disability Rights. Georgetown: Georgetown UP. Piercy, Marge. 1969. “Unlearning Not to Speak.” In Circles on Water, 97. New York: Doubleday. Rand, Erica. 1995. Barbie’s Queer Accessories. Durham: Duke UP. Rapp, Rayna. 1999. Testing Women, Testing the Fetus: Th e Social Impact of Amniocentesis in America. New York: Routledge. Rich, Adrienne. 1986. “Compulsory Heterosexuality and Lesbian Existence.” In Blood, Bread, and Poetry, 23–75. New York: Norton.
Riley, Denise. 1999. “Bodies, Identities, Feminisms.” In Feminist Th eory and the Body: A Reader, eds. Janet Price and Margrit Shildrick, 220–6. Edinburgh, Scotland: Edinburgh UP. Russo, Mary. 1994. Th e Female Grotesque: Risk, Excess, and Modernity. New York: Routledge. Saxton, Marsha. 1998. “Disability Rights and Selective Abortion.” In Abortion Wars: A Half Century of Struggle (1950-2000), ed. Ricky Solinger, 374–93. Berkeley: U of California P. Scott, Joan Wallach. 1988. “Gender as Useful Category of Analysis.” In Gender and the Politics of History, 29–50. New York: Columbia UP. Sedgwick, Eve Kosofsky. 1990. Epistemology of the Closet. Berkeley: U of California P. Silvers, Anita. 1995. “Reconciling Equality to Diff erence: Caring (f)or Justice for People with Disabilities.” Hypatia 10(1): 30–55.
Spelman, Elizabeth, V. 1988. Inessential Woman: Problems of Exclusion in Feminist Th ought. Boston: Beacon Press. Th omson, Rosemarie Garland. 1999. “Narratives of Deviance and Delight: Staring at Julia Pastrana, ‘Th e Extraordinary Lady.’” In Beyond the Binary, ed. Timothy Powell, 81–106. New Brunswick: Rutgers UP. ———. 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia UP. Tuana, Nancy. 1993. Th e Less Noble Sex: Scientifi c, Religious and Philosophical Conceptions of Woman’s Nature. Indianapolis: Indiana UP. Wald, Priscilla. 2000. “Future Perfect: Grammar, Genes, and Geography.” New Literary History 31(4): 681–708. Williams, John M. 1999. “And Here’s the Pitch: Madison Avenue Discovers the ‘Invisible Consumer.’” WE Magazine, July/Au- gust: 28–31. Wolf, Naomi. 1991. Th e Beauty Myth: How Images of Beauty Are Used Against Women. New York: William Morrow and Co. Young, Iris Marion. 1990a. “Breasted Experience.” In Th rowing Like a Girl and Other Essays in Feminist Philosophy and Social Th eory, 189–209. Bloomington: Indiana UP. ———. 1990b. “Th rowing Like a Girl.” In Th rowing Like a Girl and Other Essays in Feminist Philosophy and Social Th eory,
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RT3340X_C021.indd 274 RT3340X_C021.indd 274 7/11/2006 10:06:40 AM 7/11/2006 10:06:40 AM 275 22 Introducing White Disability Studies A Modest Proposal Chris Bell My modest proposal is inspired by a popular television program airing on the Chicago PBS affi li-
ate. “Check, Please!” gathers three “ordinary” residents who, aft er selecting their favorite restaurant, anonymously dine at all three establishments, then gather in a studio to debate the relative merits and shortfalls of each culinary venue. During one episode, the trio included a self-styled bon vivant whom I will call Dorian Gray. Dorian, while sharing his observations about a Chinese restaurant in a south Chicago suburb, expressed his unadulterated amazement at the composition of one particular entrée. “Th e shrimp were artifi cial!” he bemoaned, dread contorting his facial features into an expres- sion of unrecoverable distress. Th e individual selecting said restaurant as his favorite—I’ll call him Bubba Gump—blinked nary an eye at this revelation. Instead, Bubba stoically intoned, “If it looks like a shrimp, and it smells and tastes like a shrimp, it’s a shrimp.” Bubba Gump’s matter-of-fact rejoinder to Dorian Gray is, I think, indicative of the whiteness of Disability Studies in its present incarnation. Th e fact that Disability Studies is marketed as such when it is in actuality an artifi cial (read: limited and limiting) version of the fi eld does nothing to prevent it from being understood as Disability Studies, which is what Bubba, by extension, apprised Dorian of. I contend that it is disingenuous to keep up the pretense that the fi eld is an inclusive one when it is not. On that score, I would like to concede the failure of Disability Studies to engage issues of race and ethnicity in a substantive capacity, thereby entrenching whiteness as its constitutive underpin- ning. In short, I want to call a shrimp a shrimp and acknowledge Disability Studies for what it is, White Disability Studies. In contradistinction to Disability Studies, White Disability Studies recognizes its tendency to whitewash disability history, ontology and phenomenology. White Disability Studies, while not wholeheartedly excluding people of color from its critique, 1 by and large focuses on the work of white individuals and is itself largely produced by a corps of white scholars and activists. White Disability Studies envisions nothing ill-advised with this leaning because it is innocently done and far too dif- fi cult to remedy. A synoptic review of some of the literature and related aspects of Disability Studies bears this out. “Vital Signs: Crip Culture Talks Back” Th is documentary was fi lmed during a conference on Disability and the Arts on the campus of the University of Michigan. Th e fi lm is distressing because of its absence of non-white individuals. Given the absence of people of color, I suggest that a signifi cant number of myths and misconceptions about who/what is constitutive of disability or “crip” culture are bolstered and reinforced in the fi lm. RT3340X_C022.indd 275 RT3340X_C022.indd 275 7/11/2006 10:07:52 AM 7/11/2006 10:07:52 AM Chris Bell 276
No Pity: People with Disabilities Forging a New Civil Rights Movement In his introduction, author Joseph Shapiro refers to the disabled community as the largest minority community in the United States, with more members than communities tallied by race, ethnicity, or sexual orientation amongst other socially-constructed identity categories(7). What interests me is Shapiro’s obfuscation of divisions within this ostensibly-largest minority community and his insinua- tion that the disabled community is a monolithic one, struggling against the same oppressors, striving for identical degrees of dignity, recognition and cultural representation. Such a characterization is a limited one that does not consider or address the rich diversity within disability communities—racial and ethnic diversity, for example. A Matter of Dignity: Changing the Lives of the Disabled Comprised of a series of interviews with disabled people from various life strata, the dearth of people of color in the text is as undeniable as it is fl agrant. In order to prevent this text from surprising the unexpecting reader, it might be a good idea to acknowledge that whiteness is positioned as its center. Doing so would make for a much more accurate description of who/what is represented. Claiming Disability: Knowledge and Identity In her well-known text, Simi Linton describes Disability Studies by stating, “Th e fi eld explores the critical divisions our society makes in creating the normal versus the pathological, the insider versus the outsider, or the competent citizen versus the ward of the state”(2). Th e reader should recognize the dichotomous line of thought here, the binary fashion with which Linton makes her critique. At the very least, it should be understood that many white disabled people have cultural capital by virtue of their race and are, therefore, more on the inside than they are on the outside. As an insider, Linton appears unaware of her positioning, and it is that unawareness that is one of the hallmarks of White Disability Studies. Enforcing Normalcy: Disability, Deafness and the Body Th roughout this text, Davis takes whiteness as a norm. From his discussion of the desirability of the Venus de Milo to his examination of the protagonist in “Born on the Fourth of July,” Davis’s empha- sis on whiteness is undeniable. Th ere is, to be sure, nothing wrong with this focus (aside from being egregiously misleading with regard to which communities and subjectivities are constitutive of “dis- ability”). I only wish Davis had broadened his source materials, or at the very least opted for a more accurate title e.g., Enforcing Normalcy: Disability, Deafness and the White Body. Moreover, it matters that an excerpt from this text is reprinted in Th e Norton Anthology of Literary Criticism, the ostensible Bible of literary studies. Th ose readers coming across this excerpt will necessarily receive a distorted view of Disability Studies as a result of Davis’s focus on whiteness. Queer Disability Conference Near the conclusion of the fi rst day of this conference that convened in San Francisco in June 2002, I met with approximately thirteen other self-identifi ed queer and disabled people of color during a caucus session. Our conversation focused on our individual and collective sense of exclusion based on race and ethnicity. 2 We could not fathom how the conference organizers—every one of them a RT3340X_C022.indd 276 RT3340X_C022.indd 276 7/11/2006 10:07:58 AM 7/11/2006 10:07:58 AM 277 Introducing White Disability Studies white person—could publicize this conference in numerous international contexts and venues—draw- ing participants from Finland, Australia, and the United Kingdom among other nations—but fail to devise and implement an outreach plan that would attract people of color and other marginalized groups within the queer and disabled communities in the local Bay Area. We also could not under- stand the overarching mentality of many of the attendees, perhaps best expressed by a remark made in a breakout session: “Being disabled is just like being black, so society should stop hating us and give us our rights.” Society for Disability Studies Annual Conference, 2005 During the business meeting at the conference’s conclusion, the people of color caucus presented a list of action items to the membership in an eff ort to shore up the marginal presence race and ethnicity had at the conference (despite the fact that the conference was themed “Conversations and Connec- tions Across Race and Disability”). Although the hour-long conversation that ensued was collegial and productive, I cannot help wondering, drawing on my experience at the Queer Disability Confer- ence,
3 how many times these questions of inclusion and exclusion have to be raised by people of color to white individuals? As I averred during the business meeting, “I’m tired of being one of the few to point out what should be obvious.” Modern Language Association (MLA) Conference on Disability Studies and the University Convened on the campus of Emory University March 5–7, 2004, the conference is notable at the outset for the sheer whiteness of those who presented. A quick glance down the list of presenters (as published in PMLA in 2005) 4 bears this out. An additional concern is the content of what was shared during this conference. In his address, “Disability: Th e Next Wave or Twilight of the Gods?,” Lennard Davis, thankfully, speaks to the white nature of Disability Studies: “Disability studies has by and large been carried out by white people” (530). He is grossly incorrect, however, in the follow-up assertion that the fi eld will benefi t from “the disability studies book about the African American experience of disability” (ibid). To be sure, there is no singular, structuralist African American experience of disability and it is im- prudent to advocate for one. Davis is further incorrect when he insists that said text must incorporate the recent “post-race” debate. Placing strictures on a text is foolish, especially when the strictures themselves lack intellectual value and integrity. 5 In “What Is Disability Studies?,” Simi Linton includes an instructive albeit telling example to il- lustrate the diffi culty of answering the titular question: A few years ago, a controversy about the golfer Casey Martin and the golf cart captured a great deal of attention. Martin petitioned the PGA—the Professional Golfers’ Association—for permission to ride a golf cart in pro tournaments as an accommodation for a mobility impairment. When the PGA turned him down, Martin took the case to court. It was eventually deliberated in the Supreme Court, where Martin prevailed. Th e most signifi cant outcome of the debate, I think, is that the discussion came down to the question, What is the game of golf? Some people said, If he rides a cart, that’s not golf. I’d like to know, then, what golf is and who has decided. (519) As I mentioned, the example is instructive, but also rather telling: GOLF?! Come on! I challenge the reader to name one non-white golfer . . . Okay, now name one non-white golfer besides Tiger and Vijay. On a more serious note, as I read through the collection of essays and presentations from the Emory conference I am concerned with how oft en each scholar cites the other, revealing an uncomfortable RT3340X_C022.indd 277 RT3340X_C022.indd 277 7/11/2006 10:07:58 AM 7/11/2006 10:07:58 AM
Chris Bell 278
incestuousness about Disability Studies. Th ese individuals seem unwilling to step aside even briefl y and let someone else have the (proverbial) microphone for a moment. Granted, if the MLA calls, there is appeal in the form of professional legitimacy. But I also suggest that there is appeal in giving someone else a chance to speak to the issues embedded in and examined by Disability Studies, in asking who will be there and fi guring out who should be there, as well as who has not been asked and why. Th e failure to do so practically ensures that the silences, namely those concerning race and ethnicity, will not be addressed and will continue. * * * * * If Disability Studies as a fi eld had taken a refl exive look at itself at some point, particularly with regard to its failings in examining issues of race and ethnicity, there might not be such a glaring dearth of disability-related scholarship by and about disabled people of color. As it stands, Disability Studies has a tenuous relationship with race and ethnicity: while the fi eld readily acknowledges its debt to and inspiration by inquiries such as Black Studies, its eff orts at addressing intersections between dis- ability, race, and ethnicity are, at best, wanting. Disability Studies claims to examine the experiences of a vast number of disabled people, yet the form that representation takes is, far too oft en, a white one. Th
is is by no means a sporadic occurrence. Quite the contrary, the slights occur habitually and, as the preceding examples prove, in various contexts, from published works to conferences. I think it is essential to illuminate the fragile relationship between disability, race, and ethnicity in extant Dis- ability Studies, arguing not so much for a sea-change in this formulation, rather for a more defi nitive and accurate identifi cation of the happening. What follows then is my ten-point scheme (pace, Mr. Letterman) on how to keep White Disability Studies in vogue and instantiated as disability praxis. Given the fact that well-intentioned individu- als are inclined to ask what can be done to “make things more diverse,” I have purposely craft ed the following as a series of “do nots.” By doing so, I hope to shore up how presumptuous it is to position the subaltern as the all-knowing savant insofar as issues of diversity; requesting defi nitive answers from that person when the answers might best come from within, following an extended period of rumination. 10. Do not change a thing. Let’s keep doing what we’re doing. Let’s remain fi rmly rooted in this wave of disability, consciously opting not to move to the next. Let’s continue to acknowledge white individuals as the Disability Studies core constituency. 6 Do not outreach to communities of color or participate in their events when the opportunity to forge connections arises. Do not solicit for a themed issue of Disability Studies Quarterly on race, ethnicity and disability 7 and
if by chance said issue should be produced, make sure that it occurs only once; that there are no eff orts to ensure that these intersections are spoken to throughout future iterations of the journal in a non-“special issue” context. In sum, do not change a thing. Continue to fetishize and exoticize people of color as subalterns by constantly focusing on their race and ethnicity, but not that of the white subject. 9. Do not address ethnicity, rather continually focus on race. Many Disability Studies schol- ars—and people in general—are unwilling or unable to pick up on the cultural signifi cance of ethnicity in contraposition to what some are (erroneously) convinced is the biological foundation of race. Regardless of where the two concepts spring from, the fact is that they are distinct. It becomes problematic then when all that comprises ethnicity gets collapsed under the umbrella term of race. As a fi eld White Disability Studies has no stake in this process and therefore should do nothing to address it. 8. Do not consider that, as Stuart Hall has explained, “Cultural identity is not an essence but
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