The "Impurities" of Activism
Few social movements are inclined to mix "moral crusades" with "practical crusades." Treatment activism in the late 1980s was distinctive for the powerful fusion of these two forms. A case in point was the presentation made by activists in early 1989 before a special governmental committee charged with reviewing procedures that concerned cancer and AIDS drugs—generally called the "Lasagna committee" after its chair, Dr. Louis Lasagna of Tufts University, in Massachusetts, an authority on clinical trials and FDA approval policies. What particularly caught Lasagna's attention was the extraordinary contrast between the AIDS activists and the spokespersons for other illnesses. On one hand, there was the "very well behaved," "well-dressed" woman dying of breast cancer, who testified before the committee in moderate tones about the need for new cancer therapies. On the other hand, there were the noisy AIDS activists who "came dressed in any old way almost proud of looking bizarre." The activists' "penchant for the dramatic" was well evidenced at the hearings, Lasagna later recalled: "About fifty of them showed up, and took out their watches and dangled them to show that time was ticking away for them." But the activists' message did not rest on theatrics alone. "I'd swear that the ACT UP group from New York must have read everything I ever wrote," said Lasagna. "And quoted whatever served their purpose. It was quite an experience."
Even as activists creatively blended moral and scientific claims-making, they were burrowing progressively deeper into the institutional structures of the federal health bureaucracies. In consequence, activist identities were being reshaped—that was part of what the construction of credibility entailed. As Mark Harrington recalled after contributing to the activists' testimony before the Lasagna committee:
"There was a lot of euphoria, but there was also a wistfulness about crossing over. From then on we were sort of inside/outside, and not just outside; and [we] sort of lost innocence. I knew that we would never be so pure and fervent in our belief that we were right, because we were actually going to be engaged and, therefore, be more responsible for some of the things that actually happened." As treatment activists sought to mobilize supporters and construct their own frames for the problems with AIDS research, they experienced the tensions—endemic to many social movements—between "prefigurative" and "accommodationist" politics. On one hand, they sought to "live their values" and see them inscribed on the inner workings of the institutions of medicine and science. On the other hand, they strove for effectiveness within the system as constituted. The tension between these goals would lead to cleavages and fractures in AIDS activist organizations over the succeeding years.
A broadly similar contradictory impulse could be observed in the educative strategies of the grassroots treatment organizations and in the conceptions of science that they put forward. Project Inform, for example, didn't simply advise people with AIDS or HIV infection what to do or what to think, it also sought to educate them about how to weigh scientific claims, read between the lines of the journal articles and the news reports, and make informed treatment decisions—how, in other words, to assess credibility in science. In the October 1987 issue of its publication, PI Perspectives , Project Inform set out the dilemma: "What is a reasonable strategy in the absence of hard scientific conclusions? How do I choose something that is likely to help without throwing money away?" It's not "reasonable," the article maintained, to put much faith in unscientific "personal testimonials"; "to avoid being misled by personal enthusiasm or stifled by the turgid pace of science, one must focus as much as possible on objective, measurable indicators." When considering a new treatment, one should first ask what formal research data are available on this treatment. Next, who conducted the research? ("We must look to the reputations of the authors and institutions they are working for.") Where was the research published? ("The best shows up in major journals, such as New England Journal of Medicine, Lancet, JAMA , and Science .") Do the research data lack "apparent validity"? ("Are there obvious internal inconsistencies or misleading statements"?) What controls were employed in the study? How many people were studied? Is there a plausible theory for the mechanism of antiviral action? How is antiviral
activity measured? ("Viral culture methods are notoriously inconsistent.")
In essence, Project Inform was proposing that people with AIDS or HIV infection pursue the same interpretive strategies as do doctors and scientists themselves when they read a scientific journal article: they should weigh the markers of credibility that attest to the validity of scientific claims. Indeed, if anything is surprising about Project Inform's advice, it is the utter conventionality of their assumptions about the telltale indicators of good science. There were no suggestions here, for instance, that forces may sometimes conspire to keep articles out of the prominent journals or that new ideas may spring from unlikely sources. Nor, in the reliance on "objective, measurable indicators," was there any truck with relativist notions about truth being in the eye of the beholder.
This strategy for the knowledge-empowerment of the movement represented one face of AIDS treatment activism and, indeed, one face of Project Inform. At times, the movement asserted its faith in science (or a particular, positivist conception of it): it believed that "only by following the rules of investigation will we ever be certain of a treatments' [sic ] usefulness. We differ with the scientific establishment mostly in regards to the pace of research and the degree of certainty required before a treatment should be made available." At other times, the movement posed fundamental challenges to the conventional scientific wisdom about who produces knowledge and what social practices ensure its validity. This unresolved tension—between reformist and revolutionary critiques of scientific practice—would surface with regularity in the debates over treatment in the years to come.