The Legacy of AIDS Activism
The Refashioning of Patients and Doctors
The impact of the AIDS movement on biomedical institutions in the United States has been impressive and conspicuous. At the same time, as Alberto Melucci has noted, social movements often have a "hidden efficacy" which becomes apparent only over time: by challenging cultural codes and conventions, they suggest to the broader society "that alternative frameworks of meaning are possible and that the operational logic of power apparatuses is not the only possible 'rationality.'"[40] Given the diverse influences that AIDS activism has already begun to exert, it seems likely that the movement will engender just this kind of shift in systems of meaning.
For instance, it has rapidly become something of a cliché to say that the doctor-patient relationship will never be the same in the wake of AIDS. As Stanford AIDS researcher Thomas Merigan reflected, "The doctor isn't the same doctor [as] when I started in practice. … The doctor in the past was somebody who made your decisions for you and held your hand; and … you would just believe in him."[41] Granted, models of interaction between doctors and patients have diversified considerably in recent decades: AIDS provides a convenient frame for summarizing changes that were already in the works. What is perhaps the significant effect of AIDS, then, is that a more cooperative model has become normative (at least in medical rhetoric) and has been incorporated into medical school curriculums.[42] This changed conception of the doctor-patient relationship has also been linked explicitly to an emergent understanding of the appropriate researcher-subject relationship. Patients have a "participant's interest" in clinical research that extends beyond the mere protection of their "rights" as "human subjects"; communities have a stake in the review of research protocols that is not satisfied by the token request for their "input."[43]
"Having our patients or our research subjects ask—or demand—to have an active voice in what we do and how we do it may be challenging, time-consuming, and even unpleasant," comments UCSF's Robert Wachter, one of the organizers of the International AIDS Conference in 1990. "It is also undeniably right."[44]
On first glance it may be surprising, but on reflection it seems predictable that one of the ways in which AIDS treatment activists are changing the character of medical relationships is by deciding, in some cases, to pursue careers in medicine. Two of the activists interviewed for this book, Michelle Roland and Rebecca Smith, had already proceeded from ACT UP to medical school; a third, Garance Franke-Ruta, aspires to the "medical school class of 2000." "I was always interested in medicine," Roland recalls, "but I did not want to go to medical school"; "I did not like doctors, I thought they were arrogant, I thought they were just not pleasant people, I thought their values were fucked up—and I did not like Western medicine. I, at that point, wouldn't take aspirin for a headache. You know, I was one of those people." Ironically, it was Roland's experiences with ACT UP that made her recognize "that medical training was going to give me the power that I wanted [in order] to influence health care," and "that I was going to be a much more powerful advocate and a much more intelligent advocate if I understood what I was arguing about, and if I understood what the people I was arguing with believed. …"[45] Smith, meanwhile, has sought to use her activist experience to improve the medical curriculum at her university by increasing students' exposure to the statistical principles underlying clinical trials.[46]
New Voices on the Medical Horizon
The AIDS movement has encouraged individual patients to seek new ways of relating to their health-care providers and vice versa. But it has also inspired a range of organized challenges to biomedicine, some of which have developed into full-fledged social movements. Certainly, the history of medical self-help groups—ranging from the most reformist to the most radical—long precedes AIDS activism.[47] But the past few years in the United States have seen a marked upsurge of health-related activism of a distinctive type: the formation of groups that construct identities in relation to particular disease categories and assert political and scientific claims on the basis of these new identities. With its assimilation of the critiques put
forward by the feminist health movement, the AIDS movement was a beneficiary of "social movement spillover"; now its own tactics and understandings have begun to serve as a "master frame" for a new series of challengers.[48]
Most notably patients with breast cancer but also those suffering from chronic fatigue, multiple chemical sensitivity, prostate cancer, mental illness, Lyme disease, Lou Gehrig's disease, Alzheimer's, and a host of other conditions have displayed a new militancy and demanded a voice in how their conditions are conceptualized, treated, and researched.[49] These groups have criticized not only the quality of their care but the ethics of clinical research ("Are placebo controls acceptable?") and the assignment of control over research directions ("Who decides which presentations belong on a conference program?"). While not every such group derives its approaches directly from AIDS activism, the tactics and political vocabulary of organizations like ACT UP would seem, at a minimum, to be "in the wind."[50] (Could one imagine, before the AIDS activist repudiation of "victimhood," people with muscular dystrophy denouncing the Jerry Lewis Telethon as an "annual ritual of shame" and chanting "Power, not pity" before the news cameras?[51] ) To date, none of these constituencies has engaged in epistemological interventions that approach, in their depth or extent, AIDS treatment activists' critiques of the methodology of clinical trials. But Bernadine Healy, then director of the NIH, expressed it well in 1992 when she told a reporter: "The AIDS activists have led the way. … [They] have created a template for all activist groups looking for a cure."[52]
Breast cancer activism is an intriguing instance of this new wave, because the links to AIDS activism have been so explicit and so readily acknowledged. In 1991, more than 180 U.S. advocacy groups came together to form the National Breast Cancer Coalition. "They say they've had it with politicians and physicians and scientists who 'there, there' them with studies and statistics and treatments that suggest the disease is under control," read a prominent account in the New York Times Sunday Magazine .[53] In its first year of operation, the coalition convinced Congress to step up funding for breast cancer research by $43 million, an increase of almost 50 percent. "The next year, armed with data from a seminar they financed, the women asked for, wheedled, negotiated and won a whopping $300 million more."[54] The debt to AIDS activism was widely noted by activists and commentators alike. "They showed us how to get through to the Government," said
a Bay Area breast cancer patient and organizer. "They took on an archaic system and turned it around while we have been quietly dying."[55] Another activist described how she met with the staff of AIDS Treatment News to learn the ropes of the drug development and regulatory systems.[56] In 1994, ACT UP/Golden Gate participated with San Francisco-based Breast Cancer Action in a "funeral procession" -style protest against the Genentech Corporation to demand access to a monoclonal antibody with potential efficacy against the disease.[57]
Gracia Buffleben, a "48-year-old heterosexual housewife and nurse" who joined Breast Cancer Action after her own diagnosis with cancer, was initially astonished by the expertise of the AIDS activists: "It was unbelievable to me that somebody could have the depth of knowledge that they had and not have a scientific background or a medical background."[58] For her part, Brenda Lein of ACT UP/Golden Gate was dismayed by how easily manipulated the breast cancer activists could be at first, in the absence of the sort of expertise about drug development that AIDS activists had acquired. She described attending an early meeting between cancer activists and pharmaceutical company representatives where the drug company scientists "were just snowing them over left and right—blatantly lying to them: 'No, you can't have access to protocols,' 'Oh, we don't share that information, it's confidential.'"[59] Lein worried, in 1993, about breast cancer activists "putting the cart before the horse": they appeared to be imitating the outward forms of AIDS treatment activism—"The AIDS folks have community advisory boards, we want that too!"—without first developing the knowledge base that had made those institutions meaningful. But increasingly, breast cancer activists were stepping back to learn the science and to educate themselves about clinical trial design—even to attend oncology sessions at the ACTG meetings.[60]
Of course, it would be rash to assume that AIDS activism has created an automatic receptiveness on the part of scientists or doctors to health movements of this sort, and that the next round of activists can simply step up to the counter and claim their rewards. A more likely scenario is that AIDS activism will usher in a new wave of democratization struggles in the biomedical sciences and health care—struggles that may be just as hard fought as those of the past fifteen years. It is worth remembering, too, how difficult this sort of activism is to sustain: organizing a social movement is arduous enough without having to learn oncology in your spare time. In 1994, Mark Harrington was happy that his term on the ACTG's Community Constituency Group
had expired; he cited the "incredible amount of work" involved in preparing for scientific meetings: "There are enormous faxes and Federal Express boxes, and there are four to six conference calls a month." More profoundly, one of the challenges for any movement that would follow in the footsteps of AIDS treatment activism is how to sustain, over an extended period, what Harrington describes as "a lasting culture of information, advocacy, intervention, and resistance." Asked Harrington: "How can we foster this culture that is probably going to need to continue for longer than all of us may? This becomes a very important issue, and one that we didn't consider in the first few years. …"[61]
Expertise and Democracy
"If citizens ought to be empowered to participate in determining their society's basic structure," writes Richard Sclove, "and technologies are an important species of social structure, it follows that technological design and practice should be democratized."[62] There is a growing, international body of literature suggesting means by which science and technology can be brought further under popular control—studies of "science shops" that bring researchers into collaboration with citizens, "science courts" that invite laypeople to pass judgment on political controversies with scientific dimensions, and citizen boards to assess technological risks.[63] Yet there is also good cause to recognize the extraordinary difficulty of eradicating hierarchies founded on knowledge-possession—hierarchies that can cut across social movements just as easily as they can divide "laypeople" from "experts." This, too, is a dilemma that will confront future groups that seek to democratize biomedical knowledge-making or other domains of science and technology.
In the goals of democratizing science and building "lay expertise," at least three distinct difficulties are interwoven. First, the practices of science by their nature presuppose specialization: no one can know everything; everyone must therefore acknowledge that others speak with authority—at least some others, some of the time. To participate in science, then, means inevitably to cede authority over most of its domains at the same time that one constitutes expertise over a particular one. Even AIDS treatment activists tend to specialize among themselves and construct a division of expert labor: some study vaccine development, others follow immunology, still others "adopt" a particular
drug and track its development. In this way, activists become essential to one another, since all must trust that the others have done their homework and know what they're talking about. Understood in these terms, "democratization" of science is inevitably a partial and uneven process and one that, ironically, proceeds hand in hand with the consolidation of new relationships of trust and authority.
The second difficulty confronted by social movements that seek to democratize the practices of knowledge-making is that there may be tension between participation in the construction of scientific knowledge and the requirements of movement-building. While inarguably successful in important ways and according to various criteria, the shift "inward" and "backward" by key treatment activist groups has made it harder for them to frame issues for the media or a broader public, to recruit new members, and to maintain a broad-based and socially diverse movement. The ways of representing natural and social reality that activists develop in their role as "lay experts" may differ significantly from the representations that they elaborate in street demonstrations and other, more conventional, activist venues. And the tactics of "expertification" that have ensured the activists' credibility before the research establishment may be, at least to some degree, in conflict with the goal of ensuring movement leaders' credibility in the eyes of the communities that the movement seeks to represent.
Issues of professionalization and hierarchy—and risks of cooptation—are not, of course, unique to AIDS activism.[64] Other movements, such as the environmental movement, have struggled over "insider" and "outsider" strategies and the relative merits of professionalized activism when interacting with credentialed experts.[65] Few are the cases, however, of movements so fundamentally dependent on their adversaries as is the AIDS movement, and it is this binding of need and antagonism that has accentuated the complexities of the interaction and brought them into sharper relief. The experience of AIDS treatment activism suggests that confronting highly technical domains of science can have a wide range of effects upon the internal and external dynamics of a social movement. Even when activists deliberately erode the boundaries between "science" and "politics," they may find that the tactics and tools that facilitate their engagement with scientific elites are at variance with other movement goals and may distance them from some of their "lay" compatriots who perceive them then as "experts." Such developments can lead to profound
internal struggles to determine a movement's very identity, as well as how it communicates its messages and what it sets out to accomplish.
The third problem is that knowledge hierarchies are rarely "accidental" in their origins: They tend both to build upon and reinforce social cleavages based on other markers of difference—class, formal education, race, gender, sexuality, and nationality. When the power of expert knowledge within a social movement overlaps with other systems of hierarchy, the results can be problematic for the movement, even if the new experts work entirely in good faith for the benefit of all. The interweaving of expertise with diverse forms of power is evident to those who become positioned on the margins. It is apparent, in another way, to "border people"—as Garance Franke-Ruta (a white woman) refers to the position of herself and Moisés Agosto (a Puerto Rican gay man) inside TAG, an organization that is predominantly composed of white gay men.[66] As an "outsider" who believed in the importance of treatment activism for communities of color, Agosto found he had to fight his way into a position of access and influence—to break into the tight circles that the first generation of treatment activists had constructed between themselves, government health officials, academic researchers, and pharmaceutical companies. Wearing two hats, Agosto took a staff position with the National Minority AIDS Council but remained active with TAG, becoming a member of its board. However, once he found himself appointed to the National Task Force on AIDS Drug Development, Agosto confronted an ironic challenge from the grassroots: "People have come to me and said, 'Well, we lost you. You're on the inside now with the Task Force.'"[67]
Agosto rightly observes that his options have not been foreclosed: "I can [still] go and scream in the streets if I feel I have to." But he cannot entirely escape the metamorphosis of identity that follows from engagements with power and knowledge. The fact that various dimensions of social hierarchy, such as those constructed in relation to racial difference, crisscross and intertwine with the politics of expertise only complicates the story and imbues it with added poignancy. These considerations suggest the true dimensions of the problem: it is unlikely that knowledge-making practices can be substantially democratized, except when efforts to do so are carried out in conjunction with other social struggles that challenge other, entrenched systems of domination.[68]
This broadening of perspectives would set heady goals for a movement more immediately concerned with the concrete business of saving
lives. But even the most "professionalized," "expert" activists pursuing "insider" strategies have seen precisely these deeper purposes as the motivation for their efforts. "If AIDS activists ever leave any legacy other than their own bodies," wrote Gregg Gonsalves and Mark Harrington in 1992, "it will be, among other things, a movement for national health care and the democratization of research."[69] Certainly the genuine progress that has been made in the struggle to democratize biomedicine is not negated by the failure to realize it in full, any more than the medical advances in the fight to keep people with AIDS alive are belied by the failure to eradicate the epidemic. In the meantime, the struggle continues on multiple fronts, and AIDS activists' strategies for engaging with medical science continue to provoke controversy and provide inspiration.