Joshua Lukin, Ph.D.
Lecturer, Department of English
An article from the Temple University Faculty Herald 36(4), February 14, 2006
"The future of Disability Studies," wrote a group of disability scholars in the Modern Language Association last year, "is Black indeed." The scholars were members of the MLA's Committee on Disability Issues in the Profession, and their prophecy expressed a determination to begin a long-overdue discussion of Black issues and artists in the context of Disability Studies, and vice-versa. Committee member Robert McRuer, of George Washington University, noted that, with few exceptions, Disability Studies silently assumes whiteness in its practitioners and subjects. McRuer recalled how, twenty-four years ago, the endless repetition of the phrase "Blacks and women," as though the two were mutually exclusive categories, provoked the creation of the volume, All the Women Are White, All the Blacks are Men, but Some of Us Are Brave: Black Women's Studies. That emphasis on where identities intersect, and the need to create more complex concepts of identity that could accommodate that intersectionality, transformed feminism: McRuer and his allies hope for a similarly deep transformation in Disability Studies.
The disability rights movement gained widespread recognition in the 1970s; the academic field of Disability Studies is associated with the founding of the Society for Disability Studies (SDS) in the 1980s; and humanities scholars at the MLA have been working in the field since the early 1990s. African Americans constitute twelve percent of the population but eighteen percent of Americans with disabilities; so one might reasonably ask why the appearance of Black Disability Studies has taken so long. Moreover, since the SDS did finally have a conference on race last year, one might also wonder what role the MLA's scholars of language and literature seek to play in a field that, given its emphasis on citizenship rights and social oppression, seems to be better suited to historians, ethicists, legal scholars, and social scientists. The answers to those two questions are connected, and relate to the tensions between Black activism and disability advocacy going back to the earlier days of the disability movement.
I. ACTIVISM
Black disabled activist Johnnie Lacy, in a 1998 interview for UC Berkeley's oral history archive, recounted several decades of experience trying to negotiate her minority identities. As early as 1960, Lacy was exquisitely conscious of the freedom that even those who might oppose race and sex discrimination felt they could exert in oppressing people with disabilities. She recalls the San Francisco State University professor who successfully organized a movement to stop her from studying in his department because he saw no place in his profession for wheelchair-users: ". . . my final and departing shot to him was that if I were just a woman, he could not do this to me; if I were only a person of color, he would not be able to do this to me; and . . . the only reason that—the only way that you [are] able to take this unfair advantage is because I have a disability."
Although the analogy between racist and ableist discrimination is evident in Lacy's protest, she did not see that analogy being widely understood. At the time, and well into the early Seventies, her interaction with her fellow Black activists led her to believe that the Black community shared the larger society's prejudices against the disabled: "I believe that African Americans see disability in the same way that everybody else sees it—[perceiving people with disabilities as] worthless, mindless—without realizing that this is the same attitude held by others toward African Americans. This belief in effect cancels out the black identity they share with a disabled black person, both socially and culturally, because the disability experience is not viewed in the same context as if one were only black, and not disabled. Because of this myopic view, I as a black disabled person could not share in the intellectual dialogue viewed as exclusive to black folk. In other words, I could be one or the other but not both." Although the Black community acknowledged the existence of disability, Lacy felt that it did not recognize the possibility of people with disabilities having a group identity. "I also discovered . . . that many African-Americans consider being black as having a disability, and so they didn't really identify with disability as a disability but just as one other kind of inequity that black people had to deal with."
With the late Seventies came the "504 Demonstration," the Stonewall Inn of the disability rights movement. The Rehabilitation Act of 1973 had contained a provision making it illegal for any federally funded institution or activity to discriminate against the disabled; but this passage, like the lines in the 1964 Civil Rights Act prohibiting sex discrimination, was not taken seriously by the federal government. Like the women's movement of a decade earlier, and the desegregation movement before that, the disability movement took to direct action to compel the State to keep its promise. For twenty-five days, disability activists occupied the San Francisco offices of the Department of Health, Education, and Welfare, ultimately prompting HEW to grant their demands that the antidiscrimination law be enforced with no exceptions.
Johnnie Lacy was among the many disabled citizens who gained a new understanding of the position of the disabled in society, realizing that a newly self-aware minority was no longer going to ask meekly for the favor of equal opportunity: "I saw disabled people demanding things . . . that should have been theirs . . . and I immediately made the connection . . . I had worked in the anti-poverty program before, and poor [Black and Latino] people were given the same kinds of lack of respect and the same kinds of treatment." At this point, Lacy did not feel she had to deny or disavow her other identities to accept her newly-affirmed status as a member of the disability community: the education she received in and around the 504 Demonstrations gave her "a sense of pride as a disabled person, not as a black person and not as a woman. But it . . . brought the three together for the first time to me. And sort of made me feel like a whole person . . . I could identify myself with a whole group of people that I never identified and that I didn't really know existed. It was like sharing my experiences as a disabled person for the first time, sharing my insights . . . It was like being with a group of people who saw themselves as people, not as objects of pity . . . people, like I say, were being empowered and they were not blaming themselves."
As an activist in the new movement, working at Berkeley's Center for Independent Living and similar institutions, Lacy found herself on the other side of the divide: instead of feeling frustrated with the Black community's limited understanding of disability culture, she became a kind of ethnographic guide to the largely white disability community, trying to educate its members who had no clue as to how to approach the Black community. Although she quickly taught her white colleagues to avoid openly condescending behavior, she had more difficulty with their ignorance of cultural difference: "It's just that they came from backgrounds where . . . they just didn't have that much exposure to people of color, and they truly did not know how to outreach with these folks. They just felt that if you're disabled, that's the only thing, you know, that's important." She struggled to explain how many minority cultures had different attitudes toward community and family than did the independence-minded white professional class, and how those differences were relevant to the Independent Living Movement. Ultimately the movement's minority outreach resources improved with the recruitment of more activists of color who had received and given training in the "504 group."
The obstacles to recognition and understanding between the two movements, Black and disabled, are discussed further by blind Black activist Donald Galloway in the Berkeley oral history archive. Working at the Center for Independent Living in 1973, he was punished for advocating a larger minority presence: "I was the only black, and I started bringing black people into the center as drivers and attendants, and bringing in professional types . . . I went to the board of directors at the center, and said, we're going to start a black caucus to make sure we get our voice heard. That went over like a lead balloon . . . because the attitude was that we were all one, and there's no need for it . . . I got kicked off the board because of my position." But while the disability movement took some time to perceive the need for attention to race, Galloway recalls Bay Area Black leaders who were responsive to the needs of the disabled in the Seventies. He brought the Black Panther Party into an alliance with the 504 demonstrators and persuaded the Black elected officials of Berkeley to support the Center for Independent Living.
Yet, despite his personal successes in connecting with Black organizations on specific issues, Galloway ultimately shared Lacy's feeling that there was a gap in mutual understanding between the movements: "To be realistic about it, the black community, even now, the organized black community did not really identify with the struggle of people with disabilities in the same way. I think that we, as disabled people, identify with the black movement. But the black movement . . . did not want to include people with disabilities in the movement . . . In fact, Senator Humphrey, during the 1973 debate . . . when the Civil Rights Act of 1964 came up to be voted on, he wanted to include people with disabilities, and the black organized community said, 'No . . . '" Only in the Nineties, when a broad coalition was required to save the Civil Rights Act, did Galloway see a mutually respectful alliance forming. His description of it is telling: "We came in and basically helped to bail—not to bail—to help them, to help us to—it's hard to call them and us, because I'm a part of both groups, so I'm bouncing back and forth, so you understand when I said them and us. We had to go in and help support the reauthorization of it. It was successful. And now they are beginning to understand that we needed to support each other . . . It's that kind of awareness that's beginning to happen between the different groups. The women's movement went through the same thing."
II. SCHOLARSHIP
The issues behind Galloway's struggle over which group to call "them" and "us" are illuminated by a recollection Johnnie Lacy has of a Community Action agency meeting in the Sixties: "I can remember one manager standing up and declaring very loudly that he didn't see a difference between disabled people and black people, because he was black, and he felt just as disabled as a disabled person. And I think he got a big support for that statement. And I think it clearly was a dividing point, between the way blacks saw disability and the way that black disabled people saw disability. There was a difference." That "difference" is central to the conflict between the two movements —whenever one group said "We are the same," the other group said, with some insight, "No. You are exploiting my group's experience just so that you can have a metaphor for your own." And individuals who occupied both groups at once were caught in the crossfire. The tension created by one group feeling that its experience was being reduced to a metaphor still occurs in situations where people with disabilities seek representation alongside racial and ethnic minorities.
The activist whose analogy elicited Lacy's objection was using rhetoric familiar to students of disability. Maverick literary scholar Leslie Fiedler wrote two books late in his sixty-year career, 1978's Freaks and 1996's Tyranny of the Normal, that analyzed how literature and culture draft anomalous bodies into an army of symbols: stories featuring disabled figures have historically used such bodies for political protest, allegorical lessons, horror, or sentimental reassurance. Reading stories of disability, we are constantly admonished: This is what industrial society does to people! This is what alienation from divine grace looks like! This is what you risk turning into! This is how even the weakest among us may triumph! Very rarely do we see simply, This is what a person with a disability interacting with the world experiences —a descriptive goal that is taken for granted in stories about characters from other historically marginalized groups. A reader today, informed by the successes of the women's movement, may wince at the metaphoric use of rape to describe the oppression of Black men in Richard Wright's Native Son; contemporary attitudes toward race will surely leave one uneasy with the use of whiteness as a term for virtue in the poetry of Blake and Kipling. But, as critic Michael Bérubé has observed, it still takes a rare sensibility to notice that the lawyer in Native Son presents disability as a moral failing when he shouts, "Your philanthropy was as tragically blind as your sightless eyes!"
Hence, in its rhetorical use of disability, the manager's claim that he feels just like a disabled person because he is Black comes as no surprise. But in historical terms, it is a novel connection —traditionally, African Americans have been extremely averse to race/disability analogies; when scholars seek to include disability alongside race and ethnicity in a multicultural curriculum, objections still arise from representatives of racial minorities who take offense at the suggestion that they could have anything in common with the disabled. Jennifer James, a literary scholar at George Washington University, has researched the historical reasons for this aversion, some of which she discussed on the MLA's Black Disability Studies panel.
Simply put, from the beginnings of the United States, the claim that "Blackness is like disability" was not used as an expression of how Black Americans suffered but as a tool of their oppression. During the American Revolution, James explains, "the Continental Congress decided not to enlist 'Negroes, Boys unable to bear Arms nor Old men unfit to endure the Fatigues of the Campaign,' . . . New Hampshire refused to accept 'lunatics, idiots and Negros,' implying blackness was a similar mental deficiency." The very fact of blackness was regarded as a deformity or disability, even by white Americans sympathetic to the cause of civic equality. In the 1860s, "Abolitionist Thomas Wentworth Higginson, who commanded . . . the first African American regiment officially raised for the Civil War, issued this progress report on his black subordinates: they 'were growing more like white men—less grotesque.'" These associations naturally influenced Black writers' priorities: James argues that in "post-Civil War African American literature particularly, it was imperative that the black body and the black mind be portrayed as uninjured . . . in order to disprove one of the main anti-black arguments that surfaced after emancipation —that slavery had made blacks 'unfit' for citizenship."
The same rhetorical issues were at work in the integration struggles that followed World War II: as postwar civil rights agitations grew, the stakes surrounding public portrayals of blackness also increased. To aid the struggle, image brokers sought cultural products that highlighted the tragedy of white oppression and the reliability of black dignity. In practice, this meant excluding portrayals of Black Americans that would suggest sexuality, childishness, or disability, all of which were associated with the history of anti-Black stereotypes. The ironies are painful here —Black soldiers were disproportionately punished for infractions of discipline during the war, and those with war-derived physical and mental disabilities were often denied discharge, and sometimes subjected to beatings and torture in the guise of "therapy." But the pressure to convey the public message that "The Negro is just like you," with "you" being an imagined able-bodied, empowered, white audience who could aid in the liberation struggle, led to strange silences and distortions on the subject of disabled Black veterans. It was in this context, James says, that John Oliver Killens censured his fellow Black novelist Ralph Ellison for depicting psychologically disabled Black veterans.
James finds tools for understanding this problem in recent disability scholarship, especially that of Henri-Jacques Stiker, whose 1982 disability history Corps infirme et sociétés was an early landmark in the field. The final third of Stiker's book is a critique of "rehabilitation." People disabled by wartime injury or by work-related accidents, Stiker explains, have for the past century or more been the object of attempts to reintegrate them into society. Such efforts assume that "integration" and "society" are conditions that everybody wants to, and should, be in. To James, John Oliver Killens' complaint is part of a "black politics of rehabilitation" that requires black bodies to prove their "sameness" before Black people can be fully integrated into the national community. For people with disabilities, "readjustment must be to society as society is presently constituted." Society promises the benefits of sameness, luring the "other" to accept rehabilitation. The idea that "society" requires radical change, and the idea that the forces creating marginalized groups and minorities outside the norm must be fought, form no part of this rehabilitative model.
The idea that demanding to be "like everybody else" attributes a greater value to "everybody else" than "everybody else" may possess is of course a commonplace of Black activism from the Sixties onward, beginning with James Baldwin's asking, in the context of a demand for immense transformations in Western societies, "Do I really want to be integrated into a burning house?" But Jennifer James finds that even in the Fifties, there was one literary voice consistently and repeatedly defying the pressure to engage in "damage control," and possessing none of the "hesitance to offer graphic descriptions of a black body wounded by warfare" that she sees informing most postwar Black literature. This author, who presented unashamed depictions of unrehabilitated Black male bodies, was the poet and novelist Gwendolyn Brooks. In her 1944 "Soldier Sonnets" (retitled "gay chaps at the bar"), her 1949 volume Annie Allen, and her 1953 novel Maud Martha, Brooks breaks with a tradition of Black American war writers who evaded the issue of bodily injury; she seeks to give voice to various "non-heroic" bodies using prose and verse structures that mirror their broken forms. The argument that "we are like other people" does appear in such sonnets as "the white troops had their orders but the Negroes looked like men," but these "men" are not idealized figures of empowerment: they lose their limbs, faces, blood, and lives in a war that offers little glory. Brooks' project, James believes, is to force socially produced disability into view and to show that society, rather than the individual, is in dire need of rehabilitation.
Diane Bryen, the director of Temple University's Institute on Disabilities, wrote in the Faculty Herald ten years ago of the central precepts of Disability Studies and the movements that gave rise to it. They include
- An opposition to "cureism," the belief that the goal of people with disabilities should be focused on eliminating their disability.
- An opposition to the depiction of people with disabilities as helpless, pitiful, and powerless victims of their impairments.
- An opposition to the "Supercrip" myth of the disabled person who pulls himself up by his bootstraps to become an Inspiration to Us All.
- Perception of the "problem of disability" as a social (not a medical) problem that can be minimized by eliminating barriers in the environment.
- The belief that people with disabilities have shared histories, cultures, and interests, and a desire for full citizenship, encompassing social and political self-determination.
- The insistence, exemplified in the slogan "Nothing about us without us," that people with disabilities and their perspectives be included in accounts of disability and the formation of disability policy.
These dogmas have been powerful tools for uniting people with similar goals, values, and experiences. But some of them suffer from the problems inherent in any attempt to make broad generalizations that define a culture or an identity.
The University of California at Berkeley's Anna Mollow is particularly interested in who is excluded, or inadequately represented, by some of the dominant accounts of disability. While Jennifer James's work shows how Black voices and Disability Studies critiques converge, Mollow, another participant in the Black Disability Studies panel, focuses on how Black perspectives can shake up and complicate the conventional wisdom of the Disability Studies world. She urges that "in examining intersections of forms of oppression, we guard against the dangers of a 'disability essentialism,' in which the experiences, needs, desires, and aims of all disabled people are assumed to be the same and those with 'different' experiences are accommodated only if they do not make claims that undermine the movement's foundational arguments."
To hammer home her argument, Mollow chose to analyze a book that differs from the ideal disability narrative in several ways. Not only is its author a Black female immigrant, but her disability is psychiatric: the book is Meri Nana-Ama Danquah's memoir, Willow Weep for Me: A Black Woman's Journey Through Depression. With its emphasis on "suffering", "illness", "courage", "resilience", and ultimately a "triumph" achieved through Prozac and other medical treatments, the volume is utterly heretical from a disability perspective. Mollow explains that a disability movement view on mental health would bear a stronger resemblance to that of the psychiatric survivor movement: "Members of this movement define themselves as 'survivors,' not of mental illness, but rather of institutionalization in psychiatric hospitals. Indeed, they often reject the very category of 'mental illness,' which they view as a largely meaningless invention of modern psychiatry that serves to enforce conformity to social norms and to derive money and power for mental health 'experts.' . . . Survivors' testimonies demonstrate the appalling extent to which the label of ‘mental illness' has been used to deprive people of autonomy, respect, and human rights."
For Danquah, Mollow notes, the challenge is not to get out of a system that unjustly stigmatizes her as ill but to get into a system that unjustly denies the reality of her illness and the resources she needs to recover: "Danquah sees adequate medical treatment for her depression as a necessity, to which poverty, racism, and gender bias have created almost insurmountable barriers." Danquah's complaints were initially ignored by doctors who muttered "hormones"; the most effective drugs came at a price she could not afford; and she was subjected, inside and outside the Black community, to the stereotype of the Black woman inured to emotional hardship, for whom "weakness" was inconceivable: "Black women," Danquah explains, "are supposed to be strong — caretakers, nurturers, healers of other people — any of the twelve dozen variations of Mammy." In short, Black women are expected to deny their own emotional needs while attending to those of others, exemplifying for their own people the stoicism that sustained the race. Hence defining her suffering as sickness, rather than her natural fate or duty, was a radical move on Danquah's part.
Mollow sees Danquah's admission that she has an illness as playing the same role that, in an ideal disability narrative, the realization that there's something wrong with society would play. Just as people with disabilities are supposed to do, Danquah stops stigmatizing herself and recognizes that she is not, herself, the source of the problem, and that society has placed barriers in her way that she doesn't have to accept as natural. Moreover, Danquah's story complicates the disability movement's rejection of the "overcoming narrative," an inspirational story of personal triumph that makes the individual responsible for his own success, ignoring the need for social change. For although Willow Weep for Me is jam-packed with "overcoming" rhetoric, Danquah is exquisitely aware of how social forces play a role in her illness and how imperative is the need for institutional change.
The theme running through the work of Jennifer James, Anna Mollow, Rosemarie Garland-Thomson (who has written about disability in the work of Toni Morrison, Anne Petry, and Audre Lorde), and their allies is the need to listen to Black voices and consider distinctively Black experiences when tracing the history of disability and its artistic representation. The insights that their work provides can help us make sense of the dilemmas and obstacles described by African Americans with disabilities and indeed could help to reduce the misunderstandings and ignorance encountered by Lacy, Galloway, and others in their position. Disability Studies superstar Simi Linton, who will be reading and teaching on the Temple campus this March 15, has written that the 'Disability Studies' project is to weave disabled people back into the fabric of society, thread by thread, theory by theory. It aims to expose the ways in which disability has been made exceptional and to work to naturalize disabled people—remake us as full citizens whose rights and privileges are intact, whose history and contributions are recorded, and whose often distorted representations in art, literature, film, theater, and other forms of artistic expression are fully analyzed." It is imperative that those threads and theories, and that "fabric of society," not be imagined as all white.