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Concerto for the Left Hand
Disability and the Defamiliar Body
By Michael Davidson The University of Michigan Press
Copyright © 2008 University of Michigan
All right reserved. ISBN: 978-0-472-07033-6
Chapter One
Strange Blood Hemophobia and the Unexplored Boundaries of Queer Nation
Nominal Queers
In the late 1970s, the development of freeze-dried blood-clotting factors drawn from multiple donors dramatically affected the lives of persons with hemophilia. Until this time, persons with chronic blood diseases had relied on transfusions from whole blood or cryoprecipitate (fresh frozen plasma) administered by a nurse or physician. Such transfusions were both time-consuming and expensive, necessitating a ready supply of blood products and a clinical staff well versed in each patient's bleeding history and blood type. Since severe hemophiliacs require transfusions often-sometimes several times a week-patients need easy access to a clinic. Too long a delay following a bruise could result in joint bleeding or hematoma that would take weeks to dissipate. Hematomas are excruciatingly painful, and over time they cause severe cartilage and tissue damage to the joints, leaving many hemophiliacs crippled. In the case of bleeding to the cranial or neck area, delays in treatment could result in death. Without immediate blood transfusions, routine tooth extractions, nosebleeds, bumps, andbruises become life-threatening events. With the new freeze-dried product, hemophiliacs could infuse themselves at home, giving them a freedom that they had not enjoyed before.
The miracle of factor concentrate was a boon to patients, doctors, and blood-product companies alike. Patients could keep vials of concentrate in their refrigerators to be used at the first sign of bleeding. Children were especially aided by this new technology since they could be transfused at home or at school and thus participate in most regular play activities. Whereas prior to the development of cryoprecipitate in the mid-1960s persons with hemophilia seldom lived beyond teenage years, they could now live a full life. By using home transfusion as a prophylactic or preventative form of treatment, they could avoid joint or muscle bleeds, thus eliminating the attendant orthopedic problems that crippled so many severe bleeders. Doctors and hematologists could spend less time administering transfusions and devote more time to the residual effects of bleeding disorders. And of course the profits of blood-product suppliers soared. A hemophiliac with severe Factor VIII deficiency will spend $60,000 to $150,000 annually for clotting factor alone, each vial of concentrate costing as much as $1,500. Any further complications such as injury or surgery can boost medical expenses for blood products to $500,000. Blood ceased to be a "gift," in Richard Titmuss's phrase, donated by disinterested individuals for the purpose of sustaining life, and became a product that earned high profits for its producers.
As it turned out, the miracle of factor concentrate was a death sentence. In January 1982 the Centers for Disease Control in Atlanta received word of a fifty-five-year-old hemophilic male who was diagnosed with Pneumocystis carinii pneumonia, the most characteristic and fatal of the opportunistic diseases suffered by AIDS patients. Although his case could not be directly linked to AIDS, two more cases in the summer of that year were diagnosed, and all three patients died. When the CDC alerted the Food and Drug Administration (FDA) that what was then called GRID (Gay-Related Immune Deficiency) might be spreading through transfusions, the agency did nothing, fearing a panic that would severely diminish the blood supply. Since factor concentrate is distilled from thousands of donors, chances of infection for hepatitis had always been a risk. Now, with the added danger of HIV infection, blood could be lethal. Without any restrictions placed on them by the CDC or FDA, the major blood-product companies continued to distribute infected blood.
The willingness of the major pharmaceutical companies to continue distributing blood products after their purity had been questioned has been the focus of numerous individual suits and one major class-action suit. The suit was filed against four blood-product companies (Rhone-Poulenc Rorer Inc., Baxter Healthcare Corp., Miles Inc. [now Bayer Corp], and Alpha Therapeutic) and the National Hemophilia Associations, the latter of which, according to the New York Times, "falsely advised hemophiliacs in the 1980s that the H.I.V. risk in taking the products was minimal. It [the suit] says the foundation gave this advice because it was financially dependent on the manufacturers" ("AIDS Suit" A18). A federal appeals court in Chicago, however, ruled that the thousands of HIV-infected hemophiliacs who joined in the suit could not file as a group since a class-action in a suit of this size could bankrupt the plasma-products industry ("Ruling Bars HIV-Infected Hemophiliacs" A 16).
In January 1983, the National Hemophilia Foundation asked that screening procedures be adopted to discourage blood donations from high-risk groups, specifically homosexual men. It was not until 1985 that AIDS antibody screening tests were approved, and nationwide testing of blood began. Between 1980 and 1986, more than 60 percent of the nation's twenty thousand hemophiliacs were infected with the HIV virus, and by 1988 90 percent of all severe bleeders had been infected. With the advent of blood screening in 1985 and through the development of heat-treated and recombinant factor, exposure to HIV through transfusions dropped considerably. But for the thousands of hemophiliacs who were infected with the HIV virus in the 1980s this change offers little solace.
As a person with hemophilia I well remember the enthusiasm with which my doctors and clinical aids received the news of factor concentrate. I was instructed in the proper mode of home transfusion, given my precious bottles of powdered concentrate and infusion kit, and sent home to await my first bleed. Since I have a rather moderate form of Factor IX hemophilia (Christmas Disease), I never had to use the concentrate during the years it was contaminated, but visits to the clinic in the mid-1980s revealed a profound change in the hemophilia community. Now in addition to the more recognizably crippled hemophiliacs, I saw patients emaciated by various opportunistic diseases characteristic of persons with AIDS. Mailings from the various hemophilia organizations changed from being about new blood products and infusion therapies to information about HIV infection, AZT, hospice networks, AIDS hotlines, and, inevitably, memorial services. Persons with hemophilia who had been medically integrated into normal life activities were now ostracized from schools and businesses, their already fragile insurance policies canceled, and their access to life-sustaining blood products profoundly altered. Moreover, fears of AIDS contamination at the blood banks kept potential healthy donors away, thus diminishing the supply of fresh frozen plasma.
One of the most psychologically devastating effects of AIDS on the hemophilia community was its disruption of the codependent relationship between patients and the medical establishment. For obvious reasons, hemophiliacs had developed close ties with clinics, doctors, and pharmaceutical companies, and individuals often moved from positions as care-receivers to care-givers, working within hemophilia organizations and clinics and serving on the boards of blood-product companies. Spouses and parents of hemophiliacs often became professional nurses or clinicians themselves through their intimate knowledge of blood infusion processes. If the National Hemophilia Foundation (NHF) was reluctant to criticize pharmaceutical companies in the early stages of AIDS, it was because these companies were regarded less as corporate entities than as members of the family, as interested in the health of their consumers as in that of their profits. As David Kirp observes, so dependent were medical specialists on their "pharmaceutical patrons" that it was not until 1994 that the World Federation of Hemophilia permitted public criticism of the drug companies (66). As with other chronic diseases, patients developed long-term relationships with nurses and doctors, relationships cemented by the development of comprehensive care and family-oriented treatment. AIDS turned blood products into commodities and transformed medical professionals into antagonists. And after some delay, as I will point out, it turned hemophiliacs from patients into activists.
I rehearse this brief history to describe a multistage crisis in what I call "blood culture," one based on the transmission and circulation of healthy blood. By speaking of a culture of blood I am contrasting those constituencies bonded by shared bodily fluids, tissues, and genetic codes to those based on family, racial, or even national characteristics. Among the latter, blood is often used as a metaphor that stands for racial characteristics-as in the infamous "one-drop rule" by which individuals with even the slightest trace of African heritage were automatically marked as black. Since hemophiliacs-as well as other persons with genetically inherited disease-share the blood of others, they are linked as a group in ways that defy traditional cultural markers. The fear of blood or bleeders (hemophobia), then, annexes phobias about other constituencies for which the penetration of the bodily envelope is perceived to transgress boundaries of racial or sexual normativity. Cultural identities are often based on binary terms (self/other, participant/observer, insider/outsider, hegemonic/ subaltern), but one based on blood would have to be, in the most literal sense, fluid and porous.
The stages in this crisis within blood culture could be defined as follows. First, the infection of clotting factor dramatically halted what had been a forward-moving, optimistic narrative in hemophilia research. Second, it marked a shift in AIDS discourse from narratives about a disease spread among "others" to one infecting "us." If AIDS could be transmitted by blood (instead of sexual acts), then "we" heterosexuals were vulnerable to penetration. Finally, by bringing an exclusively male community of hemophiliacs (as an X-linked disease, hemophilia is found almost exclusively among males) together with gay males, AIDS redefined the nature of homosocial community and forced a reconsideration of sexual identities among heterosexual bleeders. This latter stage has important implications for current debates within queer theory and sexual politics. The politics of Queer Nation, as Lauren Berlant and Elizabeth Freeman have pointed out, involves a carnivalization of gender roles that contests fantasies of American national unity. But the borders of Queer Nation, while open to transgressions of sexuality, are often closed to identities not constructed through sexuality-identities that are interpellated into queer culture but which lack adequate documentation. In this respect people with disabilities-including hemophiliacs and persons with AIDS-cross multiple borders, beyond those of sex and gender.
In each of these levels, public fear of tainted blood annexed earlier national anxieties about infection, placing hemophiliacs in subject positions that had been occupied by immigrants, people of color, and sexual minorities. Hemophiliacs who had devoted their lives to integrating themselves into "normal" life now found themselves in clinics and support groups with nonmainstream, marginal populations. At the same time, by their proximity to a gay-marked disease, hemophiliacs were forced to create new positionalities in relation to their sexuality that contradicted their pursuit of normalcy. Such migrations of identity suggest that designations for medically impacted minorities such as disabled or challenged are inadequate to the social complexity of a genetically inherited or chronic diseases. Furthermore, the blurring of medical and sexual binaries raises a problem for social-constructionist theory in that models of queerness based upon gender performance and theatricalization may have to accommodate subjectivities based upon the most essentialized of categories: genetics, epidemiology, and blood.
Cindy Patton observes that once "perceptions of HIV risk were linked to social deviance, literally anyone or any category of people deemed epidemiologically significant could be converted into nominal queers" (Last Served 19). As an "epidemiologically significant" group, hemophiliacs were interpellated into homophobic, racist discourses for which they were ill prepared. Their political focus had traditionally been directed at medical research and health delivery systems, beginning with coagulation studies in the 1940s and the formation of the National Hemophilia Foundation in 1948. Now, as "nominal queers," hemophiliacs had to confront a gendering process that had always attended their disease and that had resurfaced through homophobic responses to AIDS. What we might call the "queering of hemophilia" did not happen overnight through a Stonewall riot or social movement; it involved a gradual restructuring of a largely male homosocial culture and the support networks upon which it had been based.
By speaking of hemophiliacs as "nominal queers" I am adapting Patton's phrase to describe figures who in acquiring AIDS iatrogenically (e.g., through a medical procedure) also inherited discursive features of social Others. They became high-risk individuals whose sexual lives were scrutinized, whose employment was endangered, whose spouses became medical pariahs, and whose relationship to the blood-product industry upon which they depended became adversarial. In numerous cases they were subject to direct harassment, most famously in the case of the Ray family, whose hemophiliac sons were taunted at school and whose Florida house was burned down in a KKK-like attack, forcing them to relocate in another city. In more recent years and through contact with gay AIDS activists, hemophiliacs have developed an activist posture toward blood-product companies that sold infected blood, filing a class-action suit and sponsoring a congressional bill (the Ricky Ray Relief Act) that would provide compensation for HIV contamination.
This interpellation of hemophiliacs into gay culture was hardly a seamless process. With the entry of AIDS into their community many hemophiliacs closed the door to their medical closets in order not to be associated with gays or not to be subject to the same prohibitions that gay people with AIDS were facing. Many were resentful of gay men whose sexual liberation had transformed their medical liberation into a nightmare. The media played up conflicts in between the two communities, creating what one commentator calls "hemo-homo wars." By serving as the "innocent victims" of a "gay plague," hemophiliacs became unwitting allies of the religious Right in shoring up a homophobic agenda-not exactly a scenario designed to win friends among gay AIDS activists. In France, as David Kirp points out, Jean-Marie Le Pen's National Front used hemophiliacs as foils in its anti-immigrant, antigay policies, linking the French acronym for AIDS, SIDA, with Socialisme, Immigration, Deliquance, Affairisme (69). The National Hemophilia Foundation's attempt to screen out homosexual men as blood donors in the early days of AIDS was regarded as scapegoating by various gay and lesbian groups. The screening of blood donors was linked by many gays and lesbians to racist practices of the nineteenth century. The San Francisco Coordinating Committee of Gay and Lesbian Services said that "donor screening was reminiscent of miscegenation blood laws that divided black blood from white blood and was similar to the World War II rounding up of Japanese Americans in the western half of the country to minimize the possibility of espionage" (qtd. in Shilts 220).
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Excerpted from Concerto for the Left Hand by Michael Davidson Copyright © 2008 by University of Michigan . Excerpted by permission.
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