The Politics of Cleavage
In agreeing to establish a Community Constituency Group that would attend ACTG meetings, Hoth and Fauci proposed that the group include representatives of a wide range of constituencies—gays, racial minorities, women, injection drug users, people with hemophilia, and children. Whether NIAID officials deliberately sought
to dilute the impact of gay male treatment activism, or simply considered it good politics to broaden the community representation, the significance of the CCG was that it became the first place where activists from all these various communities came together to talk about AIDS treatments. Particularly for activists representing communities of color, this was a long-awaited opportunity to present their views before government officials and scientists, and their agenda was broad. The established treatment activists, however, saw it as inappropriate to use the CCG as a forum for issues beyond the purview of the ACTG. They wanted to talk about the science of clinical trials, and they urged the newcomers to "get up to speed." Almost immediately, tensions rose sharply.
At an AIDS Treatment Activist Conference held just prior to a CCG meeting, some called the ACT UP/New York Treatment & Data Committee's agenda a "white male" approach to health care, focused solely on drug development to the exclusion of issues like health care financing, which were of primary interest to women, minorities, and poor people. One ACTG committee meeting ended in chaos, when members of ACT UP/New York's Women's Caucus, most of them white, blasted a planned clinical trial of pregnant women with HIV as "bad science" and "unethical." (The study, ACTG 076, was designed to test the use of AZT in interrupting transmission of HIV from mother to fetus. The activists objected to, among others things, the apparent prioritizing of fetuses over adult women in clinical research.) In response, several African-American women who were involved in running the study denounced the activists, leading a number of black and Latino members of the CCG to cry that ACT UP was "racist."
On the local level, similar pressures fractured individual ACT UP chapters. Flush from its triumphs at the Sixth International Conference, where it had mobilized hundreds of people into the streets around the conference center for a weeklong series of demonstrations, ACT UP/San Francisco swelled with new members in the latter part of 1990 and then rapidly exploded. Ostensibly, the debate concerned whether the group should continue to operate according to the consensus process, allowing a single voice of dissent to paralyze decision making. At a deeper level, most commentators agreed, the split was between those (mostly gay white men who were HIV positive) who supported the basic goal of "drugs into bodies" and those (including many of the women and people of color in the group) who sought a more thoroughgoing engagement with the class-based inequities of the
U.S. health care system and with the racist, sexist, and homophobic dimensions of biomedicine and, indeed, of U.S. society as a whole. From the standpoint of the latter group, the privileged white men were insensitive to any issues but their own; from the vantage point of the former, the forces of political correctness were engaged in utopian phrase-mongering while they were busy saving lives. The former group seceded from ACT UP/San Francisco to constitute a new chapter, ACT UP/Golden Gate.
Similar splits soon occurred in ACT UP/Chicago and ACT UP/Portland. Meanwhile, women in the Women's Caucus of ACT UP/New York became increasingly disturbed by the incorporation of "the boys" into the ACTG system. Though the Women's Caucus members had succeeded in pressuring Fauci to hold the National Conference on Women and HIV Infection in December 1990, they had never enjoyed easy access to NIAID officials, and the conference itself proved to be a tense and acrimonious event. "So imagine our fury," wrote Risa Dennenberg, describing the occasion in Outweek , "when, like ships in the night, three of [us] collided in the lobby of the Sheraton at the close of the conference, with members of the Treatment and Data Committee of ACT UP/NY, who were, unbeknownst to us, heading to a social event with these same dreaded government bureaucrats."
Members of the Women's Action Committee proposed a six-month moratorium on face-to-face meetings with government officials—to the utter bewilderment and consternation of the Treatment & Data Committee. "As soon as we got the seat at the table, which we had fought for, and which had been a part of our rhetoric for years, there was a faction in ACT UP that didn't want us to claim it," Harrington recalled with disbelief, several years later. Soon afterward, the core of the Treatment & Data Committee split off to form a new, more exclusive organization, which they called the Treatment Action Group, or TAG. "In New York, we were running a participatory democracy with nine hundred people in the room," commented David Barr, recalling how painful it was to contemplate leaving ACT UP: "You know, you can only do it for so long. …"
Gender and racial divisions, as well as debates over internal participatory mechanisms, insider/outsider strategies, and overall priorities and goals, are the kinds of issues that can tear apart any social movement. What particularly complicated the internal battles of the AIDS movement was the additional overlay of the politics of expertise. It was not simply that some people were working on the inside while
others were outside—just as important, those who were on the inside were increasingly mastering specialized forms of knowledge with which their fellow activists on the outside did not come into contact. There resulted what Gilbert Elbaz, in an analysis of ACT UP/New York, has nicely described as a gap between the "lay expert" activists and the "lay lay" activists. Stratification by gender, race, class, and education helped to structure access to the "lay expert" identity. "[It's] interesting how similar they are to the people that they're fighting," reflected Michelle Roland, a San Francisco Bay Area treatment activist. "I mean, it's science. And who is raised in this culture to believe that they could be scientists? Smart white men. And who are the treatment activists? Smart white men. All with an education. … And then you have … the occasional woman who says, 'I can do it too!'"
The CCG should have been a place where possession of knowledge became equalized. In practice, people who not only came from very different backgrounds and had sharply differing priorities but also had widely varying degrees of exposure to biomedical science were thrown together and expected suddenly to perform. The CCG "was a great experiment," reflected David Barr, "but there were people at all different points within the learning curve." Barr explained: "You'd have somebody … who had AIDS, who knew a lot about AIDS, [but who] didn't know anything about AIDS research—you know, nothing. And never had seen a clinical trial, didn't live in a city where they did clinical trials, on the one end—and then Mark Harrington and Martin Delaney on the other." The solidification of knowledge-based hierarchies was furthered by the difficulties experienced by the first wave of autodidacts in developing a coherent educational strategy that would bring larger numbers of activists into the arena of knowledge-assessment. One activist who remained with ACT UP after others left to form TAG painted a picture of a Treatment & Data meeting circa 1990: the core group of activists "feverishly [tossing] acronyms at each other," complaining that they were overworked and in need of help; the "mostly silent majority of 20 or 30," sitting in the back of the room, "waiting for a revelation."
Another tendency accentuated by the organizational splits and the professionalization of treatment activism was the increasing emphasis on Western medicine and reliance on the pharmaceutical industry, to the relative exclusion of alternative treatments and non-Western conceptions of healing. The main ACT UP chapters had always had committees on alternative treatments, while Project Inform had promoted
Compound Q, derived from the root of a Chinese cucumber, and AIDS Treatment News had regularly and consistently promoted a range of nonpharmaceutical products. With the splits in the prominent ACT UP chapters, advocates of alternative and mainstream treatments often ended up in different camps. ACT UP/Golden Gate focused on the ACTG and the pharmaceutical companies, while interest in natural and alternative treatments was pursued mainly by ACT UP/San Francisco and other groups. Similarly, in New York, TAG focused on mainstream science, while alternative treatment activists found ACT UP to be a more congenial environment.
At a national level, too, there was often little room for discussing alternative treatments. Jason Heyman, a San Francisco activist who tried to address the issue at a CCG meeting, recalls being "told to leave the room" by a prominent East Coast treatment activist. In this case as in others, the dominant treatment activists had acquired the power to perform the "boundary work" that distinguished legitimate treatment issues from illegitimate ones. "They were a wall … between us and the establishment. They were keeping us out." Heyman had no objection, in principle, to the fact that activists had moved to the inside. But once they had done so, "they changed … and they looked at us differently. They were offended by us." And the irony was that "we were doing what they had done. We were just being rude and … coming in there and saying, 'Look, this is what we want'— which is just what they had done."
By 1992, the links connecting treatment activist experts with their grassroots base had become increasingly attenuated. Knowledge still flowed "downward" in the form of articles by the treatment activists that appeared in the gay press and the treatment newsletters. But there was less accountability to the broader movement. Perhaps predictably, perhaps inevitably, pressures to democratize science conflicted with pressures to establish new hierarchies of expertise. The tugs toward these different poles coincided with yet another tension, that which existed between "prefigurative" and "accommodationist" politics— between the appeal of a radical critique of medicine and the felt need to save lives now. By the early 1990s, it seemed that the voices of pragmatism had become dominant. Core groups of activists had established themselves as important contributors to the development of knowledge about AIDS treatments—but at the price of increasing distance from what was, in any case, a rapidly splintering movement.