Free Inquiry in Creative Sodolo~r Volume 25, No. 2 November 1997 Page 145

AIDS ACTIVISM, COMMUNITIES AND DISAGREEMENTS Gilbert Elbaz, Sarah Lawrence College

ABSTRACT

Using the AIDS Coalition to Unleash Power (ACT UP) as a case study, the author argues that this social movementorganlzationisgolngthroughadlversificationprocessasactivistsfncreasinglyintegratetheHIV/AIDS research establishment. Consensus about goals, beliefs and strategies Is inaeasingly miSSing. However, instead oflimitingtheanalyalstoacaseof"identitypolltics,•typicalofthenewsoclalmovements,theauthorarguesthat some divisions among activists (npeclally those stemming from the definition of AIDS and how it should be researched) are actually helpful in better understanding the disease.

INTRODUCTION who wish to work on an "action-oriented" .... proprietary interests and conflict of interest project. ACT UP raises its own money and within and among universities, pharmaceutical does not receive any from the government. companies and govemment research have Since 1991, members have experienced crippled the fightagainstAJDS in ways that can increased diversification and tension in their hardly be characterized as science. Dogma has positions toward treatment issues at a time prevailedattheexpenaeoflives:thecytopathic when they markedly integrated the AIDS es­ modelofHIV directlykiUing T-cells and causing tablishment, achieving representation in ma­ AIDS is accepted by many as necessary and jor scientific committees. Oddly enough, this sufficient. Only recently has the scope of inves­ diversification process has led both to suc­ tigation expanded somewhat. Stl, rational thera­ cesses and failures with regard to treatment pies baaed on a comprehensive model of im­ issues. Members registered a stunning victory munedysregulation, 12yearslater, remain un­ when the Centers for Disease Control (CDC) available. (Carter 1993) finally accepted to expand the AIDS definition to include women's and injection drug users The quote above echoes the new form of (IDUs)' opportunistic infections. They also activism that the New York City-based group experienced a weakening of their activist effort AIDS Coalition to Unleash Power (ACT UP) when crucial members of Treatment and Data began to exhibit in 1987. Using the media and (T&D), ACT UP's scientific committee, left to direct action, the activist intent was to inter­ create their own "by-invitation-only" organiza­ vene into the science of HIV/AIDS, and un­ tion. The life of the organization has ever since apologetically rip open the deficiencies of the followed a see-saw evolution, enjoying few research system. ACT UP became famous significant successes, and facing equally sig­ very quickly for its massive demonstrations, nificant failures. The present paper focuses on its controversial Needle Exchange Program, the cultural meaning of this diversification and condom distribution to public high school process. students. Its efforts have stretched from ad­ dressing the needs of persons living with the NOT ONE VOICE virus for social services and health care, HIV ACT UP's diversification process has prevention in the public school system, to been analyzed as a typical case of "identity biomedical research. politics" or "cooptation," resulting from the The organization defines itself as •a sometimes conflicting, sometimes fragmented, group of non-partisan individuals united in constructions of treatment issues by activists anger and committed to direct action to end the based upo11 their various cultural and eco­ AIDS crisis." It loosely follows Robert's Rules nomic positioning& (Burkett 1995; Gamson of Order, and abides by the principles of 1989). In some cases, activists were able to participatory democracy (ACT UP 1990c). reconcile their differences, but in others, they With no president and no paid staff, the pre­ refused because they saw these as simply dominantly white middle class male members irreconcilable. VVhile some differences may discuss AID5-related "Issues" in the many have been due to the activists' socio-economic committees that have developed since the positionings, others stemmed from moral and creation of ACT UP. Many of the "actions" are epistemological grounds, that were hardly thought out and organized in "affinity-groups,· debatable and, instead, pointed to the multi­ spontaneOus groups created by individuals layered conceptualizations of HIV/AIDS. In Page 146 Volume 25 No. 2, November 1997 Free Inquiry in Creative Sociology that sense, it is argued that while conflids and their innumerable disagreements, may adu­ dashes within ACT UP may have undermined ally enhance our understandings ofthe multilay­ the activists' woric, they may have also en­ ered realities of HIV/AIDS. In sharp disagree­ hanced our multiple understandings of the ment with the c:Onventional view that science is disease. Specifically, it is argued that whereas unitary and aspires to universal truth, Haraway divisions over race, gender, and economic argues for knowledges that can only be plural lines have indeniably undermined the organi­ and located in specific economic and cultural zation, divisions over the "ontology" and "epis­ contexts. Knowledges rnay emanate from the temology" of AIDS, that is its definition and the center {position of those who have power) or way it should be researched, have actually the periphery (position of those who do not enhanced our multiple understandings of the have power). What constitutes knowledge is disease. The present artide therefore takes not its origin, but the extent to which it has been exception with the traditional view that new put under "critical examination• (Haraway social movements, such as the one embodied 1991). Because knowledge& can only be situ­ by ACT UP, inevitably self-destrud through ated, therefore contested, Haraway also identity politics. Taking a more complex posi­ champions a political epistemology, where tion, it argues instead that some divisions are people's positionings are in tension with the destrudive and others are not. productive structuring& that "force unequal translations and exchanges-material and FRAGMENTATION VERSUS MULTIPLE semioti~in the webs of knowledge and UNDERSTANDINGS power" (Haraway 1991 ). The history of sci­ It is quite evident that ACT UP embodies ence, she asserts, can be described as the a new social movement that can be charader­ histories of technologies, themselves ways of ized as the radical AIDS movement. Uke the life, social order, practices of visualizations. new social movements, its members can be Objectivity is positioned and partialled ratio­ described as primarily cultural, postmaterial, nality, and does not exdude engagement; no and postmodem moral crusaders (Habermas one can possibly be in all positioning& at the 1983; Offe 1985; Touraine 1985, 1990). Be­ same time, or even in one location entirely. cause many sociologists argue that the new Partial location does not equate relativism, for social movements are not involved in the the latter denies stakes and responsibility and political and economic arenas, they are quick assumes transcendence of the ethical and at determining that they often fall into the trap political dimensions of situated knowledges. of "identity politics." Charaderistically, ACT Instead, political and ethical terms ground., UP has been seen as following the same Haraway condudes, what constitutes valid process of identity diversification, (Crimp 1990; and crttical knowledges. While social move­ Epstein 1991; Gamson 1989; Patton 1989; ments have contributed to improving knowl­ Watney, Carter 1989) even self-destruction edges, some social interventions were not (Buricett 1995). But few analyses have gone "liberatory," according to Haraway. However, beyond this observation, and the legacy of the like Bruno Latour, she supports lay individuals' new social movement, of which ACT UP is the involvement in scientific inquiry, because ulti­ cultural manifestation warrants, it is argued, mately science is influenced by a whole array more interpretative woric. In that regard, ACT of adora including scientists, bureaucrats, UP as a new social movement is constructed elected officials and consumers themselves as a multilayered entity, including not only (Latour 1986, 1987; Latour, Wooglar 1979). various pre-existing identities, but also various This social construdivist perspedive on sci­ "epistemological" and "ontological" belief sys­ ence explains ACT UP's rapid successes and tems as to how AIDS and ita related research failures as the organization became directly are construded from a treatment perspective. Involved "Inside the arena of biomedical sci­ Arguably, cultural analyst Donna Haraway ences," and challenged areas of knowledge {1991) offers a better theoretical frall'leWOI1( to thought to be the preserve of experts only. understand the legacy of the radical AIDS Focusing upon the area of HIV/AIDS movement; beyond the traditional question of treatment and research, this paper intends to identity differentiation and division, she also demystify the •universalistic notion of an activ­ takes on the debate of knowledge construc­ ist community speaking with a single voice." tion. Her concept of "situated knowledgea· Using Haraway's perspective, it will show how can be used to highlight how adivists, even in definitional contests in which activists have Free Inquiry in Creative Sociology Volume 25, No. 2 November 1997 Pore 147

engaged illustrate their various positions with coalition, ACT UP was very well aware of these regard to treatment issues, their ethical choices, differences, but because ofthe sense of emer­ their compromise, and also their irreversible gency prompted by the epidemic, activists schisms. Beyond the "destructiveness" ofiden­ "strategically" agreed to focus upon common tity division, it is argued that ACT UP mem­ goals and tactics, as illustrated by one mem­ bers' various discussions of treatment issues ber: "when you do coalition work, you learn to have also spotlighted multiple and useful make a lot of compromises." This focus led understandings of HIV/AIDS. them to understand that confronting the HIV/ AIDS research establishment meant confront­ CULTURAL ANALYSIS ing a whole system involving drug companies Different sources of information were and federal bureaucracies. With the "global" used for this research. For three years (1990- outlook, and the focus upon common goals 1993), ethnographic observation and twenty­ and tactics, ACT UP registered many suc­ five semi-structured in-depth interviews were cesses: its first massive demonstration was conducted at the Gay and Lesbian Community organized in 1987 against Burroughs-Well­ Services Center of New York City where ACT come, the manufacturer ofAzidovudine (AZT), UP regularly meets, or at the activists' private the price of which originally ran has high as homes. Each interview lasted about one hour, $12,000 for a yearly supply. Despite un­ and activists were told that anonymity would precedented federal support, this company be ensured as would their right to refuse and others were reaping unethical profits, answering certain questions, or to stop the activists complained. Ultimately giving in to interview at any time. Because of their heavy the activist pressure, Burroughs-Wellcom low­ involvement in addressing issues related to ered its price by 20 percent (Hilts 1989). HIV/AIDS-research, members of the Treat­ In 1989, activists "shut down· the Food ment and Data (T&D) committee, the Lesbian and Drug Administration (FDA), castigating Caucus, and the Alternative and Holistic (A& H) the federal agency for slowing down the re­ committee were selected as research subjects search process. Requiring very stringent pro­ in a non-probabilistic fashion. Ethnographic cedures in the midst of an epidemic, FDA notes were taken during the general assembly regulations were "murderous,· activists meetings on Mondays, and during the meet­ claimed. and drug testing procedures needed ings organized by activists working on treat­ to be streamlined (ACT UP 1989a). Often cited ment issues. Both methods, ethnography and by the activists was the case of DHPG, a drug interviews, specifically looked at the activists' which is used to treat blindness-causing cy­ socio-economic profiles, their constructions of tomegalovirus, an AIDS-related opportunistic HIV/AIDS treatment issues, particularly as infection common among persons living with they relate to "biomedical research," and their the virus. As early as 1988 doctors knew from understandings of the conflicts that both clinical observation that the drug was both "plagued" and "enriched" the organization. safe and effective. Yet the FDA still required The main intent of the cultural analysis was to that a double-blind placebo-controlled experi­ capture the various meanings that activists ment be conducted, causing an uproar in the attached to "HIV/AIDS treatments," and the HIV/AIDS community. This decision led to "actions," strategies, alliances and divisions massive demonstrations, and the subsequent prompted by these meanings (Foote White expedited FDA approval of the drug (ACT UP 1984; Vann Manneim 1988). The activists' 1990c). Since then activists have been part of archives, the access to which was granted by all the decision processes leading to drug ACT UP, as well as the general AIDS-related approval. scientific literature were additional sources of . Much HIV/AIDS therapeutic research is information enhancing the cultural analysis of conducted by the federal research system this segment of the AIDS movement, provid­ called AIDS Clinical Trial Groups (ACTGs), ing illustrations of issues that were sources of composed ofAIDS Clinical Trial Units (ACTUs) division among activists. disseminated throughout the United States. After identifying the ACTGs' principal investi­ ONE VOICE, ONE COMMUNITY: gators (Pis) responsible for designing clinical A STRATEGIC NECESSITY trials, activists concluded that interlocking Noteworthy is that differences within the between drug companies and government group existed since its creation in 1987. A hampered research creativity (ACT UP 1990a). Pore 148 Volume 25 No. 2, November 1997 Free Inquiry in Creative Sociology

They discovered that many Pis working for the critiquing conventional science. People of color, federal government had also contraded with too, started to complain about incidents of private phannaceutical companies under the racism in the organization. The diversity of veil of •consultative arrangements• (ACT UP theories to explain HIV/AIDS, and their incom­ 19908). One activist deplored that: "The ACTGs patibility, also became increasingly obvious. system created as an alternative to the private In line with Haraway's (1991) concept of "situ­ system had adually become an integral part of ated knowledges, ·an important reason explain­ if' (ACT UP 19908). While this dual function ing ideological differences and increased di­ was constructed by the activists as ·conflid of versification within ACT UP is its historical interest, • it was viewed by the researchers as origin. ACT UP can be considered as a con­ a way to enhance communication between fluence of social movements induding mem­ federal and private research (ACT UP 19908). bers from the pre-existing AIDS movement, Arguing that this dual function granted federal the gay and lesbian movement (ACT UP researchers too much influence over the re­ 1989b), the feminist-health movement (ACT search agenda, activists often cited the undue UP 1989c), and the alternative and holistic focus upon retrovlrala such as Air. Mean­ movement (ACT UP 1989d). All of these dis­ while, people living with the virus were dying of played commonalities, but sharp differences opportunistic infections, which were hardly as well. For example, many members of the researched. Adlvlsts organized in 1990 a pre-existing AIDS movement were exdusively massive demonstration at the National Insti­ interested in "getting drugs into people's bod­ tutes of Health to denounce •conflld of Inter­ ies· (ACT UP 1990c), while others were pro­ ear and the lack of research on opportunistic moting alternative and holistic treatments. Infections (ACT UP 1990a). Even though pri­ These differences were inextricably associ­ vate consultation remained a common prac­ ated with the experience of each activist in her/ tice among federal researchers, more atten­ his respective movement. Women, a signifi­ tion was subsequently devoted to opportunis­ cant number of whom had been part of, or tic Infections. informed by, the feminist-health movement, Angered by the exduaion of women's were extremely critical of the medical estab­ and drug users' opportunistic infections from lishment. They criticized the "male bias• pre­ the official definition of AIDS, ACT UP mem­ vailing within dinical research, especially the bers flew to Atlanta in 1990, and "besieged" historical exdusion of women from dinical the Centers for Disease Control (CDC) (ACT trials. Often times they would cite historical UP 1989c, 1990b). Giving in to three-and-a­ examples of women being used as •guinea half years of arduous activist campaigning, pig" for a "male-dominated" science (ACT UP the CDC finally expanded its definition to 1989c): "If we do not take research Into our indude some of these opportunistic infections hands, the Dalkon Shield experience may (CDC 1993). Additionally, upon a legal suit come back to haunt ust• exdaimed an adivist, launched by a lawyer, who was also an ACT commenting upon the long mistreatment of UP member, the Social Security Administra­ women In biomedical research during a gen­ tion finally agreed to change its definition of eral assembly meeting. People of ~or in tum disability in the case of HIV/AIDS and open were n.ot only concerned about dlnical trial eligibility to many women living with the virus. designs, but also about their access by disen­ Yet while enjoying all these successes and franchised populations lacking economic re­ achieving representation in major governmen­ sources and overwhelmed by family responsi­ tal and phannaceutical committees, ACT UP bilities. On a regular basis, activists of African seemed to be facing internal ideological differ­ descent would remind the membership that entiation and dissension upon which the analy­ AIDS was "just another problem decimating sis of the present study centers. communities of color". "The white boys are going to find a cure. So what? you think that ACTIVISTS: people of color will be able to afford the NOT ONE COMMUNITY ANYMORE treatment?". All these concerns were tightly Just as activists were reaping the bene­ associated with ACT UP members' personal fits of their continued activism, they began to positionings in relation to the power struc­ experience inaeased dissension within the tures, of which the medical establishment organization. Women became more vocal was, in the eyes of many adlvists, a dear about their differences with men in terms of reflection (ACT UP 1990c). Free Inquiry in Creative Sociology Volume 25, No. 2 November 1997 Page 149

In the early days of the organization, the members of the Holistic and Alternative Com­ activists' "enemy" seemed to be similar for all mittee do not understand that there is not such members, until they started to gain community thing as a totally Innocuous treatment; that all representation in the major scientific commit­ treatments entail some level oftoxicity . tees. These induded virology and immunol­ ogy committees that make the most conse­ Holistic activists displayed the same sarcasrr quential decisions regarding HIV/AIDS re­ through their regular criticisms of T&D mem­ search; Institutional Review Boards (IRBs) bers: that set ethical standards for research proto­ cols; research bureaucracies such as the Na­ Even if members of T&D are Interested In tional Institutes of Health (NIH) where activists researchinimmunology,theirultlmatepurpose have gained representation through Commu­ is to find a 'magic bullet' for each opportunistic nity Constituency Groups (CCG), and finally infections. They miss the point. drug companies where activists have achieved representation through Community Advisory Interestingly enough, both types of ACT UP Boards (ACT UP 1990c). \Nhile activists were members had made inroads in the federal making their entrance within the biomedical bureaucracy: conventional treatment propo­ establishment, issues related to representa­ nents had achieved representation within offi­ tion, until then kept in the dark, started to cial scientific committees, successfully pres­ become more apparent; differences that were suring for more research on opportunistic only debated from within ACT UP began to be infections; in tum, alternative and holistic pro­ brought to light. Activists' goals were no longer ponents had been successful at pressuring the the same, and in the "activisr research per­ federal government for more research on "un­ spective, substantive, methodological and stra­ conventional" treatments, a struggle that con­ tegic differences started to emerge with in­ tributed to the creation In 1991 of an Office o1 creased sharpness. Alternative Medicine at the National Institutes of Health. Substantive Differences The quest for a bridge between the two Wtth regard to substantive issues, Har­ paradigms led a number of activists to seled away's (1991) perspective is helpful in that dif­ a communicative approach. Words such as ferences can be traced back both to people's "complementary" therapies were frequently positioning& relative to the economic, cultural being used. Most significantly, the fairly re­ and research power structures as well as their cently expanded research in immunology was individual choices. A significant number of also a factor contributing to the rapproche­ members believed in the use of medicinal ment between activists. Dissensions remained drugs, and followed their "career" (study the prevalent, however, because many activists drug) very dosely. In fact, the first committee lacked the ability to self-aitlcize, whereas only created to address research questions was a few were able to open their "partial position­ called "Treatment and Data" (T&D), the mem­ ing&" to other perspectives. Rather than stimu­ bers of which followed almost exdusively bio­ lating creative discussions made up of partial medical research conducted by pharmaceuti­ rationalities and yielding "situated knowl­ cal companies and the federal government. edges," the organization was increasingly Fewer individuals in ACT UP believed in plagued with emotional eruptions and was alternative and holistic treatments. These in­ constantly pressured by influential members volved use of naturally occurring substances, to "win over" the rest of the membership to the outcome of which could only be measured, their positioning& (Wolfe 1992). activists asserted, from combined interaction The most consequential division, how­ between "mind, spirit and body" (ACT UP ever, stemmed from a disagreement about a 1989d). At first, demonstrations were prima­ dinical trial-076--between many T&D mem­ rily organized to obtain medical treatments, bers (most of them were white middle dass but as activists were being integrated into the males) and most .women in ACT UP. The decision-making process, differences between purpose of 076, the first trial on women, was the two "schools" became Increasingly dearer; to study the effect of AZf on perinatal trans­ proponents of each school were progressively mission. Most of the women enrolled in the acting as adversarial competitors. Conven­ study were African-American. Some ACT UP tional science activists argued that: members, men and women, disagreed with Pare 150 Volume 25 No. 2, November 1997 Free Inquiry in Creative Sociology

the fact that 076 should focus on the fetus and of these divisions were based upon gender, not the woman, when a study had already race, class, and aero-status; others were based revealed that AZf could be carcinogenic to upon "ontological" and "epistemological" dif­ women. In March of 1991, the dissenting ferences, or the way HIV/AIDS is constructed activists flew to Washington and attended the and should be researched. The first type of 076 investigators' meeting. There, they were divisions could have been eliminated through faced with attacks of racism for allowing them­ critical reexamination, an endeavor in which selves to speak on behalf of a community of many activists failed to engage, confirming which they were not members. Back to New Haraway's (1991) notion that "subjugated indi­ York City, the same attacks ewaited them. Not viduals" do not necessarily question their only was race used against them, but their "partialled rationalities." The second type of serostatus as well: divisions was harder to resolve as it addressed the various ways of conceptualizing and re­ Seronegative ACT UP women were presuming searching the disease, an issue that modem to tell HIV infected women of color what to do. science has yet to finalize. While the CCG (Community Constituency Group) thereupon took up the laauea around Methodological Disagreements 076 and tried to change the trial, the factional Methodologically, what caused most dis­ disruption impaired ACT UP's credibility and cussion among activists was probably the deatroyedthemoraleofmanytreatrnentactiv­ debate over double-blind placebo-controlled ists for a long time to come. (Harrington 1992) experiments. Veryimportantbecauseitbrought forward Issues of ethics and personal respon­ In their response, the dissenting activists ques­ sibility in clinical trial designs, this debate was tioned the "ontological" and "epistemological" almost prophesied by Haraway's (1991) gen­ superiority bestowed upon seropositive indi­ eral discussion about science and objectivity. viduals, and urged the opposition to be more Two strains of thought prevailed in ACT UP. inclusive and open to dialogue: Some members tended to adopt the view that the scientific validity of double-blind placebo­ The point is that not all people with HIV agree on controlled experiments should be "rehabili­ theleOrotherlaaues. ThafswhyACTUPwu tated" in the HIV/AIDS community. They Cllled a coalition when ltwu formed by people claimed that for too long ACT UP had hastily fromeeveraldifferentAIDS and lesbian and gay dismissed the significance ofthese experimen­ organizations who could only agree on wortdng tal designs. In the case of anti-retroviral drugs togethertoend the AIDS crisis. A ooalitlon Clln't such as AZf, ddl or ddC, and the protease weft( If we don't admit that In every category inhibitors, important questions had been left used todeacrbt us and that we use to describe unanswered. For example, when should people oui'Hives (HIV+, HIV-, women, men, Afro­ living with the virus take these drugs? in what American, Latinola, Native American, Asian amount? in what combinations? These activ­ Paclfic Islander, white, gay, lesbian, straight, ists argued that in some cases use of a pla­ and so on)peoplewlhi'lthoaec:ategorleado not cebo, which can be an active placebo or a alwayaagreewlheachother. Tolnferthatone standard therapy, was indeed the only way one particular committee orworttlng group In ACT would know the answer to these questions. UP takes Its direction from people with HIV More grounded on historical and moral while all others don't is simply untrue. And we principles, the other camp of ACT UP mem­ have to find a way to have discussions about bers argued that even with double-blind pla­ issues precisely because It's untrue. ratherthan cebo-controlled experiments, "you will never to relfy any one point of view u representative know how a drug works on your body" (ACT (or unrepresentative) of all HIV+ people, all UP 1989c). As long as safety was demon­ HIV+AIDS activists, or all HIV-AIDS activists In strated, they asserted, the decision to take the ACT UP NY or other ACT UPs. (Wolfe 1992) drug belonged both to the individuals and their doctors. Additionally. they argued on moral The call for dialogue was never heeded, and grounds that: "it is no one's right to prevent these "Identity" divisions led many T&D mem­ someone from taking a non-studied drug, if the bers to leave the organization. ACT UP was for person understands the risk incurred by such the first time facing the various layers of a personal venture". The placebo proponents divisions constitutive of its membership. Some and the moral/historical proponents brought Free Inquiry in Creative Sociology Volume 25, No. 2 November 1997 Pare 151 into relief the social constructivist character of modem medicine. In that regard, method­ biomedical research wherein choice, moral ological and substantive differences among judgments, and even power seemed to be activists are more enlightening about the real­ unavoidably associated. Even though the ulti­ ity of HIV/AIDS than actual sources of destruc­ mate power of biomedical researchers to set tion for ACT UP. research parameters had been tampered upon activists pressure, power per se had clear1y not Strategic Differences been eliminated. Major discussions arose as Tied into substantive and methodological to which activist perspective would be ad­ differences were the activists' strategic dis­ vanced by ACT UP in terms oftheorganization's agreements. As they achieved their original position ws-8-ws clinical trial designs. The two goaJ...-....jnclusion in the decision-making pro­ sides were almost incompatible, since double­ cess-they almost simultaneously found it in­ blind placebo controlled experiments man­ creasingly difficult to gamer consensus about dated that individuals not have the power to questions of strategy. Also compounding stra­ choose what "goes into their bodies,· while the tegic difficulties, and creating many dissentions historical/moral perspective implied that within ACT UP, was the lack of consensus individuals should be granted freedom to use about what members defined as the "AIDS whatever drug had clinically shown to be safe. crisis.· Disagreements over strategy arose These methodological differences existed further when ACT UP members experienced among holistic activists themselves. Some of ever-increasing difficulty in defining "AIDS them believed that "holistic and alternative activism. • By 1991, differences between "treat­ treatments" were beyond the scientific meth­ ment activists" and "social activists" clear1y ods, in fact their efficacy could not be ad­ emerged: the former argued that AIDS activ­ equately proven by use of placebo research ism was to be about the virus and how to designs: "The very purpose of science is to "restructure the National Institutes of Health" break down reality, when holism is about to speed up the research process, while the continuity and harmony," a holistic activist latter claimed that the "AIDS crisis" could not asserted. Others believed that these treat­ be disentangled from the larger socio-eco­ ments should not be immune to scientific nomic crisis that plagued society, involving scrutiny, as another member explained: "if a classism, racism, sexism and homophobia. conventional treatment works, prove it; if an The former's position is well articulated in one unconventional treatment works, prove it. • member's letter sent to the ACT UP mem­ In the meantime, methodological dif­ bership. Expressing annoyance at the view ferences among activists were gaining in­ that AIDS activism should be about anything creased visibility in the media. VVhile some else but the virus, he stated: activists attempted to think up a compromise between the two views, general discussions Yet no crisis has ever been like the AIDS crisis. that should have yielded "situated, respon­ Thus, while we can and have learned much from sible and ethical knowledge&" instead often previous movements, there is much we have deteriorated into manipulative exchanges to had to inventforourselves. influence ACT UP policy recommendations. Our tactics, new methods, lacked the ideo­ Committees that should have focused on dif­ logical"purity" demanded of "the movement.· ferent areas of research, also became "fac­ ••• 1thought the movement ljoinedfouryears ago tions, • smearing other activists' work: "scien­ was devoted to lengthening and ultmately sav­ tifically" oriented members would often joke at ing the lives of people with HIV or AIDS. Had I "holistic" activists, and vice versa. However, known that some in ACT UP felt it was rather methodological differences among activists merely vague aspirations towards impossible never reached the level ofdestructiveness pro­ Utopias, I might have devoted my energies duced by differences in terms of gender, class, elsewhere. I was not then, nor am I now, inter­ race and sere-status. Differences in the way ested in leaving a noble, frustralll!ld legacy ered8d activists constructed HIV/AIDS never led to a over a pile of our corpses so that lifelong move­ schism in the organization. The reason for this ment parasites can move on to the next issues. is quite evident as methodological differences (Harrington 1992) appear to be Inherent In the fact that the reality of HIV/AIDS and how It should be researched By 1990, several T&D members had already have not yet been definitively elucidated by received personal invitations by the Director of Page /52 Volume 25 No. 2, November 1997 Free Inquiry in Creative Sodo/orr

Federal AIDS Research, a gesture which an­ achieved representation in the executive board gered many in ACT UP. Acrimonious ex­ of the ACTGs with full voting power on a changes were further exacerbated when women $250,000 research budget. They would also in ACT UP requested a moratorium on all meet on a regular basis with officials from meetings with governmental officials who had pharmaceutical companies, Congress and the refused to include more women in clinical trials FDA. and create woman-specific research designs. Difficulties in reaching consensus re­ Concerned about "survival time,· men sent garding ACT UP's strategy was also reflected the membership a letter, indicating their cat­ in the many hurdles that some ACT UP mem­ egorical opposition to this moratorium and bers had to overcome when promoting one of stressing once again the division between their latest initiatives, the Barbara McClintock seronegative and seropositive individuals: Project or the AIDS Cure Ad (ACT UP 1993). The Barbara McClintock Projed was a pro­ Just as seronegative activists had presumed to posed legislation written by some ACT UP tell advocates of seropositive women of color members with the intent of drastically chang­ how to think and act on 076, ao they now pre­ ing the strudure of HIV/AIDS research in the NnedtoteiiACTUPtreatmentac::tlviD-many United States. In particular, activists hoped of whom are adually living with HIV--how to that the AIDS Cure Ad, if passed, would re­ wortt to save our own lives. (Harrington 1992) move political and economic contingencies from the research arena. The AIDS Cure Ad As a result, some T&D members kept on hav­ was named after Barbara McClintock to honor ing dinners with AIDS bureaucrats, intensifying the courage of a woman researcher who re­ the division within ACT UP. Interminable and sisted the conventional research paradigm angry discussions between the two groups led and won the Nobel Prize for her work on DNA to a major schism, causing members from the (ACT UP 1993). Many other ACT UP members Treatment and Data (T&D) committee of ACT felt challenged in their perspective by the UP to leave the organization and create their multiparadigmatic approach promoted by the own organization, "Treatment Activist Group" AIDS Cure Ad, which ultimately did not bring (TAG), the strategic orientation of which is well the expeded consensus, even from within the expressed in the following statement: activist community. Some activists, promi­ nent among whom were TAG members, VVewanta famly atmosphere, and aiBametron. thought that the AIDS Cure Ad was too "unre­ No personality, political war. Everybody must alistic: and that AIDS activists should be feel part of a team. We do not allow saboteurs working at the sides of researchers, promoting or hot heads. We had people attack ua from change from inside the bureaucracies. Nego­ behind, or Impose their "social activism, • with tiations between activists are currently in pro­ theirformula. We have abandoned the pollicaly cess while the AIDS Cure Ad has been intro­ correct form of activism. We just want to get duced in Congress in 1994. In tum, the same things done. year, TAG members focused upon change within the AIDS bureaucracy. They accepted Throughout the country, the various ACT UP the appointment of one of its members by Bill chapters were experiencing similar tensions Clinton to be part of the National Task Force on between "treatment adivism" and "social ac­ AIDS Drug Development: they also worked tivism": in San Francisco, T&D left ACT UP/ very closely with Congress politicians in order San Francisco to create a treatment-focused to "restructure the NIH." Drastically reversing organization, ACT UP Golden Gate: in Chi­ their original demands, TAG members have cago and Washington D.C., AIDS activists attacked the process of accelerated approval, experienced drastic changes too. Illustrating for which many of them had been previously Haraway's (1991) notion of contested reality, fighting. Adding to the fury of ACT UP mem­ this split was certainly a test to ACT UP bers, TAG has defended the pharmaceutical members' ability to think critically about their attempts to end the NIH's requirements that "positioning a•. In accepting one million dollars companies charge a "fair price• for drugs de­ from Burroughs-Wellcome, (one of the activ­ veloped with the collaboration of federal scien­ ists' fiercest former enemies), TAG heralded a tists, arguing that profit was the "beat way to new form of activism, incensing many ACT UP entice drug companies into researching chemi­ members. By 1994, TAG members had cal components. • Clearly, strategic differences Free Inquiry in Creative Sodo/orr Volume 25, No.2 November 1997 Pare 153 have never been so significant and conse­ to find even a "strategically" unifying answer: quential for the radical AIDS movement. More the opposition between holistic and scientific than internal infighting within ACT UP, the activists, for example, narrowed down but institutionalization of TAG members has the never disappeared. Meanwhile, both types of effect of weakening the activist effort by mul­ activists made inroads within the federal tiplying and "blurring" the enemies. ACT UP bureaucracies, as a large body of research in members' targets are not only the "govern­ immunology militated for a rapprochement menr or the "drug companies• anymore, but between the two paradigms. So far, however, also other AIDS activists. neither paradigm has prevailed, confirming that the conflicts that ACT UP faces may CONCLUSION actually have no solutions, and instead reflect While activists have achieved increased the various ways HIV/AIDS can be constructed. representation in the federal and corporate In that sense, while ACT UP as a social move­ bureaucracies, they also have experienced ment has to a large extent suffered from the increased diversification, even division, among destructiveness of "identity politics, • it still themselves. Substantive differences could be enhances our multiple understandings of the felt between T&D members and women who disease, particularly through its internal onto­ were concerned about female inclusion in logical and epistemological discords over HIV/ clinical trials, and more generally about how AIDS treatments. women are affected by the "AIDS crisis." Substantive differences could also be felt be­ REFERENCES tween "scientifically" oriented activists and ACT UP 1989aACTUPFDA Handbook Unpublished doament "holistic" activists, who demanded that more -=:::.1989b The Queer History Project. Unpub­ "unconventional" treatments be researched. lish8d document Differences also emerged as to whether se­ -rr--.1989c The Women and AIDS Handbook. ropositive individuals were "ontologically" and Unpublished document -=~ 1989d Alternative and Holistic Files Un­ "epistemologically" superior with regard to j)Ubiished document HIV/AIDS because oftheir health status. Meth­ -..,.....,..,.1990a Critique ofAIDS Clinical Trial Gro~ odologically differences were experienced (ACTGs) Unpublished document between "traditional science" activists and 1990b Women, AIDS and Activism, The -rrm5me=nandAIDSBoolcGroupBoston: South End those who were critical of it. Among the latter Press were many women who thought that when a -=r.::. 1990c ACT UP Worlcing Document Un­ drug had been clinically shown to be safe, published document 1993 The Batbara McC/intoclc Project to whether or not to take a drug was an individual -A-rl""D,.,S, ACT UP's Detailed Plan for an AH outRe­ question. Similarly, some holistic activists search Efforllo Find a CURJ for AIDS Unpublished thought that conventional scientific method­ doament ologies could not be applied to "unconven­ Burkett E 1995 The Gravest Showon Earlh: America tional" treatments. Strategically, differences in the Age ofAIDS Boston-NY: Houghton Mifftln Carter MG 1993 Pathogenesis and therapeutic im­ emerged when people of color complained pications. ln ACTUP/New Yorlc Tteatment Aaenda about racism in ACT UP and the indifference for the lxth lntemetionai Conference on AID'S Ber­ of white middle class activists to the question lin, Gennany: Unpublished docuT1ent of access to HIV/AIDS treatments by disen­ Centers for Disease Control1993 Revised Classifi­ cation System for HIV Infection and Expanded franchised communities. Strategic differences SurveillanoeCaseDetfnltlonforAIDSAmongAdo­ were probably most consequential when a lescentsandAdultsMoltaAty and Morbidity 41 (RR- group of activists decided to leave ACT UP to 17) Crimp O,ARolston 1990A/DS Demograph~Seattle: create their "very selective" organization. Bay Press Working from within or without the govern­ Epstein S 1991 Democratic science, AIDS activism ment (or both) was a aucially divisive question and the contested construction of knowledge So­ that lethally undermined the organization, clalistRev212Apr35-M Foote White W 1984 Learning from the F/e/dBeverty many activists thought. Hilla, CA: Sage Even though some of these differences Gamson J 1989Sienoe, death and the lnviaiMenemy: could have been bridged through critical ex­ AIDS activlam and social movement 'newness' amination (Haraway 1991) of how the AIDS Social Problems 36 4 Oct 351-367 crisis affects differently various groups, other Habermaa J 1983 New social movements Telos49 33- 37 differences were purely ontological and epis­ Haraway SO 1991 Simians, Cybolps, and ~n: temological, making it very difficult for ACT UP The Reinvention ofNature Routledge Pore 154 Volume 25 No.2, November 1997 Free Inquiry in Creative Sodolofy

Harrington M 1992 Flffh Ann/verSIIIy LettertoACTUP Patton C 1989 The AIDS Industry: construction of Unpublished doament "vvcttma," "volunteers," and "experts". In S Wat­ Hilts P 1989 AIDS drug maker cut price by 20% New ney, E carter eds Taking Uberties, AIDS and Yorlc 11mes Sept 19 A 1 1 Culhn/Pollllcslondon:Serpent'sTail,publlshed Latour B 1986 The prince formti/Chlnes aa wen aa for In asiOCiatlon with ICA machination& Meeting on Technology and Social Touraine A 1a85An Introduction to the study of social Change, organized by the Center fOr Canadian movementaSocla1ReseatehWinter4 749-789 Studies, Edfnburgh, June -nr=-~1990 1M Rehmofthe ActorMinneapoHs: U - 1987 SclencelnAdJon,HowtoFollowSc/en- M"nesobl PniSS tlitiiJIId Eng/neela Through Society Harvard u Van Maanein J 1988 Tales of the Field: On ~ng Latour 8, S Wooglar 1979 Leboratory Life Loa Ange- Ethnography U Chicago Preas Watney S, E Carter eds 1989 Taking Uberties, AIDS Offe-c=1s:fr The new social movements: challenging and Cultural Politics London: Serpenfs Tail, pub­ the boundaries of Institutional polltk:a SocWRe­ lished In aaaociatlon with ICA sean:IJ 4 817-869 Wolfe M 1992 RBsponse to a 'Letter To Act Up on Its Fifth Annlvers8ry' April 21. Unpublished docu­ meri.