Is AIDS Really a Disability? or What Can AIDS Lend to Disability Phenomenology and Culture?
by Chris Bell
"A friend of mine in New York City has a half-fare transit card, which means that you get on buses and subways for half price. And the other day, when he showed his card to the token attendant, the attendant asked what his disability was and he said, 'I have AIDS.' And the attendant said, no you don"t, if you had AIDS, you’d be home dying.” - Vito Russo
Introduction
Think of the average person with AIDS (PWA). Of course such a conception is necessarily fraught with complications because there is – and I do not think there ever has been – no such thing as the “average” PWA.(1) For this reason, I ask the reader to consider the following examples of PWAs.
First, imagine an individual in the United States: a gay, white male; the kind of person stereotypically associated with HIV and AIDS. This person is militant, often participating in ACT UP-style protests in an effort to secure funding for treatment and prevention initiatives. He has a job which brings him health insurance. And then, one day, he dies.
Now, imagine a woman – across the metaphorical wall of the world – in Africa.(2) She is the mother of three children who relies on the income of her husband, an itinerant truck driver. She contracted the disease from her husband, who often engages in sex with sex workers while he is on the road. She spends her days watching her children grow, hoping she will live long enough to steward them to adulthood and independence. And then, one day, she dies.
The last vignette involves a transgender sex worker in Thailand. This individual contracted HIV from an unknown john. This person continues to engage in sex work because it provides the only known means of survival. Although the opportunity to practice unsafe sex is presented regularly – arguably because this individual does not display any outward manifestations of HIV – this person manages to persuade most clients to use condoms. And then, one day, this individual dies.
Although the aforementioned three individuals share several things in common – namely their HIV subjectivity – what I want to underscore is the lack of identification that they, and I would suggest many persons with AIDS, have insofar as a disabled subjectivity. Indeed, many persons with AIDS do not considered themselves disabled, and therein lies my point of departure for this paper. I want to trouble this lack of identification because I see it as an unfortunate one. I begin by discussing the possible underpinnings of this lack of identification, noting how the disidentification is shared by and practiced (read: reinforced) in disabled communities as well as in communities of PWAs. Next, I discuss the strategic assimilation that might occur from PWAs identifying as disabled, pointing out the benefits to both disabled and PWA communities. I conclude by specifically addressing the titular interrogatories, is AIDS really a disability and what can AIDS lend to disability phenomenology and culture, emphasizing not only the pivotal difference in the formulation of the questions, but also my idea that there is much to be gained from PWAs aligning themselves with disabled communities.
Why PWAs Do Not Identify as Disabled
I saw the call for papers for the First International Queer Disability Conference in January 2002; the conference convened in San Francisco in June of that year. What drew me to the conference was not any discernible interest in Disability Studies. Quite the contrary, my interest was piqued by the litany of disabilities this conference aimed to address, including HIV/AIDS. As I sat at my computer trying to decide if I would feel comfortable at a disability conference – attending, let alone presenting, at such a conference had not occurred to me previously – I began to question why I had never considered myself as a disabled person. Although I was diagnosed as HIV-positive in 1997, it wasn’t until 2002, five years later, that I “became” disabled.
I think my experience mirrors that of many HIV-positive and AIDS-infected individuals. For many of us, identifying as disabled connotes a putative weakening of the body, a devastating, perhaps intractable, failure of the immune system we all long to keep healthy. “Disability,” to us, implies the stereotypically disabled person, e.g. the blind, the paraplegic, and/or the cognitively impaired. Although many HIV-positive and AIDS-infected individuals, generally speaking, are not inclined to shun the more stereotypically disabled, there does seem to be a refined reticence precluding them from identifying with this perceived other. Such a characterization occurs from within disability communities as well, with many disabled persons not wanting to lend the appellation “disabled” to those with hidden or non-visible disabilities, including persons living with HIV and AIDS.(3)
These were the kinds of thoughts that coursed through my mind as I decided whether or not to submit an abstract for the Queer Disability Conference.(4) Eventually, intellectual curiosity got the best of me, and I whipped up an abstract for a paper that I thought might be of interest, a paper that discussed by ontology as an HIV-positive person.(5) Although I was still somewhat cautious insofar as whether or not my presence would be a welcomed one at the conference, I submitted my abstract with few qualms.
Arriving on the campus of San Francisco State University that summer day, I felt immediately out of place. There I was in the midst of nearly 200 self-identified queer and disabled individuals and our allies, most of whom were zooming around in wheelchairs, marching around with walkers, or ambling among the pathways with white canes thrust in front of them. This was an extremely foreign experience for me and I felt very much out of my element. Once this initial reaction subsided, I allowed my intellectual curiosity to come to the fore once more, opting to make the most of the situation by meeting my fellow conference attendees. As I made my way from one social grouping to another, I began to sense that people had marked me as “queer,” but not as disabled. No one questioned my disability status, and I did very little insofar as identifying it. Instead, I relied on the sense of non-disability that I had been familiar with (indoctrinated with?) up to that point.
Considering this scenario – my actions of hovering around the other disabled people in a quest for a readily-identifiable form of acceptance – in retrospect, I think that my behavior indicated the hierarchy within disability communities that remainders many disabled people, including persons with AIDS, out. In those rare instances like the Queer Disability Conference when AIDS is considered as a disability, persons with AIDS are like satellites orbiting those individuals who, arguably, are more constitutive of disability subjectivity. Such a characterization necessarily points to the hierarchy within disability communities, the idea that just as persons with AIDS are foolishly disinclined to identify as disabled, there are also disabled individuals who are doing their best to distance themselves and their concerns from PWAs; doing their best to keep “us” out of “their” communities. These bankrupt ideologies are inherently disingenuous and it frustrates me that so many of us have lent cachet to them. As I will discuss in the next section of this paper, there is much more to be gained by creating and maintaining alliances with one another than there are reasons for disabled persons and PWAs to intentionally disentangle ourselves from each other.
Writing in The Location of Culture, Homi Bhabha speaks to the generative aspects of cultural interstitiality and liminality:
What is theoretically innovative, and politically crucial, is the need to think beyond narratives of originary and initial subjectivities and to focus on those moments or processes that are produced in the articulation of cultural differences. These “in-between” spaces provide the terrain for elaborating strategies of selfhood – singular or communal – that initiate new signs of identity, and innovative sites of collaboration, and contestation, in the act of defining the idea of society itself (4).
Bhabha’s notion of the “in-between” spaces is important to the current discussion in its drawing light to those connections between and among subjectivities that are always already present. What makes those connections all the more significant is the fact that they are always already present, whether we are aware of them or not. Just as I was willing to take a chance, to step out of and away from my preconceived notions about disability, at the Queer Disability Conference, so too might other PWAs. There is, as I contend momentarily, a lot to be gained from PWAs identifying as disabled.
This is not to suggest that the creation and maintenance of a disabled identity for PWAs is a simplistic circumstance. Part of the difficulty I have experienced in my attempts to claim disability as a PWA relate to Bhabha’s notion of hybridity, in particular the shape-shifting nature of disability as it is currently instantiated within world cultures. Allow me a moment to explain. When I “come out” as HIV-positive, people know what that means. They may not – and hell, sometimes even I don’t – understand the exigencies of helper T-cells, viral loads and related aspects of HIV epidemiology, but they do understand the meaningful difference between HIV-positive and HIV-negative. “Disability,” on the other hand, is a term that is extremely contested, both within disability communities and from without. I do not think many individuals have an opportunity to “try on” the appellations “HIV-positive” or “AIDS-infected.” Individuals do, however, have a chance to see if they can insinuate themselves into a disability ontology and/or phenomenology; at least I know I was able to do so at the Queer Disability Conference.
Because of its shape-shifting nature, I think it is relatively easy for some individuals within disability communities to advocate for a, to their minds, streamlined definition of disability whereby some individuals take a larger share of the disability pie, leaving others with mere crumbs if even that. Such behavior and attitudes are egregiously parsimonious, and I would like to advocate for an aporia that will allow persons living with HIV and AIDS into disability communities, cultures, ontologies and phenomenologies. Lest we forget, AIDS is a protected class under the Americans with Disabilities Act,(6) so if the United States government can come to a more inclusive definition of disability, it doesn’t seem as if it’s asking too much for disabled people themselves to do the same. By that light, I want to move to the second phase of my argument, wherein I highlight the advantageous nature of claiming HIV and AIDS as a disability.
A Plea for Strategic Assimilation
I recently attended a conference in Mexico City titled “AIDS in Culture.” To my absolute surprise, this was, according to the organizers, the first ever conference on HIV and AIDS convened in this country (this despite the reality that the disease is nearly twenty-five years old). One of the presenters spoke of his work in HIV/AIDS prevention and education over the course of the last five years in the city of Queretaro. In 1999, there was, as the presenter termed it, a “stigma”(7) attached to working in the HIV/AIDS field. Drawing on this stigma, in 2000, the Confarmacion de la Red Democracia y Sexuality Humanidad was founded. This AIDS service organization is dedicated to providing timely and accurate information about the disease, information that is hard to come by via other outlets.
I find it of interest that this group was galvanized by (read: took as its impetus) past transgressions and slights (read: stigma). Such a response is reminiscent of the way that HIV/AIDS was initially addressed (or wasn’t) in other regions of the world, namely in the United States. Those individuals who were hit the hardest by the disease in the early years – in particular gay men – literally were forced to save their own lives. Butting their heads against a recalcitrant and lackadaisical government that for all intents and purposes wanted them dead, these individuals were forced to trope the trope of stigma, to turn the very idea of stigma on its head. These individuals began to advocate for themselves instead of waiting for a sleeping leadership to pay attention to the(ir) plight. Indeed, I suggest this action continues to this day, albeit on the lower frequencies, much to my chagrin.
In his influential text Stigma: Notes on the Management of Spoiled Identity, Erving Goffman writes, “The term stigma … will be used to refer to an attribute that is deeply discrediting” (3). With this definition, Goffman fails to take into account those liminal spaces that some individuals, like persons with AIDS in the 1980s if not now, actually choose to dwell in. To reiterate, AIDS patients, as they were termed then, took on the manifestations of the stigmatized body, daring mainstream media outlets such as Newsweek to print pictures of their bodies covered with Kaposi’s Sarcoma lesions and other vestiges of opportunistic infections.(8) By that light, I think it is problematic that Goffman posits those who have been stigmatized as possessing an “undesired differentness” from the “normals” (5). I choose not to believe that every single person who has been stigmatized possesses a distinct differentness that is wholly and irrevocably “undesired.” Who is to say that some individuals in our world do not derive personal satisfaction from living on the fringes of society, from being stigmatized? And considering the example of persons living with HIV and AIDS in the early 1980s, perhaps the concern is more complex than mere “personal satisfaction.” Perhaps the issue is one of rescuing one’s self from (through?) stigma.
In the same way that persons with AIDS turned stigma on its head, so, too, have disabled subjects. This became quite clear in, for example, the protests leading to the passing of the Rehab Act in San Francisco in 1980. It was also a major part of the Deaf President Now! protests at Gallaudet.(9) Arguably, this process of disabled people turning stigma on its head, like that of persons with AIDS using their culturally-inscribed stigma as an incentive to save their own lives, continues to do this day. Given the fact that both groups of subjects share a history and a present that is premised on stigma, I would like to make a plea for a strategic assimilation amongst persons living with HIV and AIDS and disabled people.
Goffman continues his assessment of stigma by noting that once they have been told that they will never function in society like the “normals,” some individuals are to be perpetually stigmatized. I want to underscore that certain individuals – namely, for the sake of argument, HIV-positive, AIDS-infected and disabled individuals – might very well draw strength and fortitude from their stigmatization, forging alliances with each other that are premised on a concerted opposition to notions of normativity. The argument here is one in favor of ontological and cultural difference, two facets that HIV-positive, AIDS-infected and disabled individuals share and experience, although the ways these individuals share those experiences of difference are themselves different. Yet there is a richness to the differences that points to the potential for coalition building amongst these groups of subjects.
Conclusion
By way of conclusion, I would like to specifically address the two title questions: Is AIDS really a disability and what can AIDS lend to disability phenomenology and culture. At the outset, I want to point out the difference in the tone of the questions. The first seems designed to shore up the historically-accepted differences between PWAs and disabled persons as the two groups are currently understood in world cultures. The italicized “really” is more than an emphatic rhetorical flourish. It draws attention to the desire for exactitude that is at the heart of the issue. There is something momentous at stake here: more than a mere alignment of one group of individuals with another group, the issue is whether or not PWAs have something to lend to the conception of disability.
Hence the second question, which strikes me as more generative in its nature, a way of stimulating the sort of intellectual curiosity that might give rise to identifying and appreciating the myriad connections (as well as the differences) between PWAs and disabled persons. The particular aspects that PWAs might lend to disability culture and phenomenology are far too numerous to delve into in this paper, and that is one of the chief nodes of my argument. Because the intersections between PWAs and disabled subjects are always already occurring, because those intersections are multivalent and salient to both groups, it makes sense to advocate for a strategic assimilation, the kind of assimilation that is built on mutual respect and trust. In my estimation, the first question is where mainstream and interstitial – including PWA and disabled – communities are positioned in this cultural moment. Drawing on Stuart Hall’s assertion that “cultural identity is not an essence, but a positioning” (229), it should come as little surprise that I am calling for a move to the sentiments that are revealed by posing the second question.
I suggest that there is much to be gained from persons living with HIV and AIDS individually and collectively claiming their disability (or disabilities as the case may be). The rise of disability activism – and more recently of Disability Studies – has resulted in a shift in view of disabled subjectivities. Long considered a group of individuals bereft of cultural worth or value, disabled individuals are troubling that formulation, coming into their own insofar as the way they are represented and valued. Persons with AIDS, similarly, have had to grapple with the politics of cultural marginalization and devaluation. What these two groups should realize and act upon are the similarities between and among their cultural positioning while remaining mindful of the concomitant differences. I know I have certainly come to a more satisfying understanding of myself having claimed my HIV status as a disability. A world has opened up for me in that process, and while I do not think that this new world is a faultless one, I am willing to live in it at this moment. I don’t feel as if anything to lose by doing so, by reveling in the intricacies and complexities, as well as the liminal potentiality, of my HIV-positive and disabled subjectivities. As I stated previously, those intricacies and complexities, and that liminality, were always already present. I just needed to come to an awareness and appreciation of them.
This paper is a work in progress. I look forward to complicating my thinking on these issues – C.B.
Footnotes
(1) AIDS is an instructive disease because it illuminates, amongst other things, how some individuals and communities are associated with it on a quotidian basis, while others hardly ever come to mind when discourses of AIDS are invoked and deployed. Yet irrespective of whether or not individuals and communities are associated with the disease, everyone is at risk of contracting HIV, which can eventually lead to AIDS.
(2) The phrase “wall of the world” is intended to underscore the distancing that positions AIDS “over there” in contradistinction to AIDS “over here.” For many individuals – scientists, policywonks, and regular folk – that distancing is significant, a way of ignoring what happens “over there”; an invitation to summarily remove “over there” from the current and historical narratives that maintain purchase “over here.”
(3) Indeed, the label “disabled” is held sacrosanct by many individuals within disability communities, a tendency I address momentarily.
(4) It is interesting to me in retrospect that I never called into question the word “queer,” which was foregrounded in the title of the Queer Disability Conference. Although I was not inclined to refer to myself as “queer” in 2002 – I do so readily now – I experienced little in the way of cognitive conflict with this term’s use because I knew that it also signaled (read: signified) gay, a more pleasing referent to me then.
(5) The reader should know that I still manifested some difficulty with labeling myself “disabled” as evidenced in the realization that there is not a single instance in the paper I presented at the Queer Disability Conference wherein I refer to myself as “disabled.” This admission becomes all the more interesting considering that the negotiation of identity politics is a salient part of the paper. I’d like to think I’ve come a long way since then.
(6) The fact that HIV is not a protected class under the ADA interests me since, I think, this exclusion illuminates the government’s parsimonious actions; that is, its own desires to allocate portions of the pie to only a select group of individuals and communities that somehow fit into its shape-shifting definitions of disability.
(7) I want to emphasize that this individual deployed this term himself. The use of the word should immediately bring to mind a famous text examined by Disability Studies scholars and theorists that I will address momentarily.
(8) Bobbi Campbell, an HIV-positive nurse, appeared on the cover of Newsweek (8 Aug. 1983). As Randy Shilts describes it in And the Band Played On, Campbell “decided to launch his own personal crusade to heighten awareness, proclaiming himself to be the ‘KS [Kaposi’s Sarcoma, a cancer attacking and killing numerous HIV-positive individuals] Poster Boy’” (108). Considering Campbell’s actions, the reader should recall Harriet McBryde Johnson’s positioning on the cover of the mainstream, white-bread New York Times Magazine twenty years later (16 Feb. 2003); a positioning designed to draw light to disability phenomenology in a way similar to Campbell’s efforts at illuminating AIDS phenomenology.
(9) This example is an admittedly tricky one to include in that so many Deaf individuals do not consider themselves disabled, an idea I alluded to earlier when I spoke to the implications and ramifications of disability definition(s).
Works Cited
Bell, Christopher. “To Act Is to Be Committed: AIDS Activism and Identity Politics in an English Graduate Program.” Paper presented at the First International Queer Disability Conference, San Francisco State University, 3 June 2002. <http://www.disabilityhistory.org/dwa/queer/paper_bell.html>.
Bhabha, Homi. The Location of Culture. London and New York: Routledge, 1993.
Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. New York: Touchstone, 1986.
Hall, Stuart. “Cultural Studies and Its Theoretical Legacies.” In Grossberg, Lawrence et al. Cultural Studies. London and New York: Routledge, 1992. 227-234.
Rubio, Octavio Acuna. “Hombres Diversats & VIH/SIDA: Enceuntros y Desencuentros en la Ciudad de Queretaro.” Paper presented at the AIDS in Culture Conference, Mexico City, 11 Dec. 2004.
Russo, Vito. “Why We Fight.” Speech delivered at the ACT UP Demonstration, Albany, 9 May 1988, and the ACT UP Demonstration at the Department of Health and Human Services, Washington D.C., 10 Oct. 1988.
Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 1988.
2005-08-19 00:00:00
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