The AIDS Activists
This chapter, with the exception of this short introduction, is a reprint of a chapter from The We reproduce the AIDS story here because it is so
Golem at Large.1
relevant to the themes of this book. The case shows, ﬁrst, how diªcult it is to conduct randomized control trials in the ideal way required by the theory of statistical analysis; the “gold” from whichthe gold standard is made shows a disturbing tendency to tarnish. Second, the theme of the tension between the best available standards of scientiﬁc testing and the needs of the individual for succor is poignantly illustrated by the sharing of drugs between placebo and treatment groups, which is the most dramatic moment in the following account. Third, the way that unqualiﬁed groups can acquireinteractional expertise and even a modicum of contributory expertise in an esoteric science is beautifully illustrated by this case. The fourth lesson is that the acquisition of such expertise is very hard work and should not be taken on lightly; for the AIDS activists to win acceptance from the scientiﬁc community they had to participate in the discourse of science, not just master the vocabulary orread the literature. The ﬁnal warning lesson for those who
consider that it is a trivial matter to acquire medical expertise is that when the activists did master enough of the science to speak on equal terms with the scientists, they found that what the scientists were saying made more sense than they had ﬁrst thought! Unsurprisingly, other groups of activists,who had not undergone such a complete passage of scientiﬁc socialization, believed their colleagues had “gone native,” allowing themselves to be coopted. That is a tension familiar in the participatory social sciences.
Acting Up: Aids Cures and Lay Expertise
On April 24, 1984, Margaret Heckler, U.S. Secretary of Health and Human Services, announced with great gusto at a Washington pressconference that the cause of AIDS had been found. A special sort of virus—a retrovirus—later labeled as HIV, was the culprit. Vaccinations would be available within two years. Modern medical science had triumphed. Next summer, movie star Rock Hudson died of AIDS. The gay community had lived and died with the disease for the previous four years. Now that the cause of AIDS had been found and scientistswere starting to talk about cures, the aºicted became increasingly anxious as to when such cures would become available. Added urgency arose from the very course of the disease. The HIV blood test meant that lots of seemingly healthy people were facing an uncertain future. Was it more beneﬁcial to start long-term therapy immediately or wait until symptoms appeared? Given the rapid advance in medicalknowledge about AIDS and the remaining uncertainties (even the cause of AIDS was a matter of scientiﬁc debate), was it better to act now with crude therapies or wait for the more reﬁned treatments promised later?
AIDS the “Gay Plague”
AIDS is not conﬁned to homosexuals, but in the United States it was ﬁrst described in the media as the “gay plague,” and gays as
a community were quick torespond to its consequences. The gay community in the United States is no ordinary group. The successful campaigns for gay rights in the sixties and seventies left them savvy, streetwise and well organized. The large numbers of well-educated, white, middle-class, gay men added to the group’s inﬂuence. Although Main Street America might still be homophobic, there were sizable gay communities inseveral big cities, with their own institutions, elected oªcials, and other trappings of political self-awareness. Being gay had become relatively more legitimate, to some extent replacing earlier views of homosexuality which treated it as a disease or deviant condition. AIDS now threatened to turn the clock back and stigmatize gay men once more. In the public’s mind, the disease was a biblical...