Learning New Languages
The shift in attention from the FDA to NIAID raised important questions about the capacity of laypeople to intervene in science. Put bluntly, how did these activists know what they were talking about? What was the source of their expertise? It was one thing to educate oneself about one's own illness and thereby shift the dynamics of power in the relationship between doctor and patient. It was quite another to suggest that one had a role in the actual conduct of scientific research.
Part of the explanation lies in issues of organization, resources, and community. Patients with heart disease who want to share information or organize a critique of medicine have to seek out like-minded individuals and find points of commonality with them. People with AIDS—particularly in gay communities—already knew how to find one another, and they benefited from a history of political and social organization. By 1988 there was an entire infrastructure encompassing treatment publications and buyers clubs, advocacy groups and grassroots activists—a firm foundation that could then support the widespread dissemination of medical knowledge. And by this point, these organizations' knowledge about AIDS often exceeded that of the average practicing physician. "When we first started out, there were maybe three physicians in the metropolitan New York area who would even give us a simple nod of the head," said the director of a New York City buyers club in 1988: "Now, every day, the phone rings ten times, and there's a physician on the other end wanting advice. [From] me! I'm trained as an opera singer!"
This was the base on which the treatment activists could build as they turned their attention to clinical trial design. To be sure, not every AIDS treatment activist started without scientific training. Iris Long, for instance, had worked for twenty years as a pharmaceutical chemist before she decided to join ACT UP/New York; she quickly made herself indispensable as a teacher of raw recruits. Andy Zysman, who would become a key activist addressing issues of cancers associated with AIDS, was an emergency physician at Kaiser Hospital; he joked that his professional background caused him to be "viewed as a reactionary Republican" when he joined ACT UP/San Francisco. More typically, however, the stars of the treatment activist movement were science novices, but ones who were unusually articulate, self-confident, and well educated—"displaced intellectuals from other fields," according to Jim Eigo, a New York City treatment activist
with a background in the arts. Often these activists were able to parlay other social and personal advantages into a new type of credibility—to convert their "capital" from one form to another, as Bourdieu would put it.
The trajectory of Mark Harrington, a de facto leader of ACT UP/ New York's Treatment & Data Committee, exemplified one pathway to expertise among the key treatment activists. Harrington studied German critical theory in college at Harvard and had worked as a coffeehouse waiter and a freelance writer. When he discovered ACT UP, Harrington was writing scripts for a film company. "The only science background that might have proved relevant was [what I had] when I was growing up: my dad had always subscribed to Scientific American , and I had read it, so I didn't feel that sense of intimidation from science that I think a lot of people feel," Harrington recalled. Taking quick stock of his ignorance about science and the federal bureaucracy, Harrington stayed up one night and made a list of all the words he needed to understand. That list evolved into a fifty-page glossary that was distributed to ACT UP members. Harrington's frequent collaborator on the Treatment & Data Committee, Jim Eigo, authored poetic critiques of scientific practice that were peppered with references to Shakespeare. These were intellectuals, to be sure, but they represented the "humanistic" wing of the intelligentsia, a fact that shaped the contours of their engagement with the other, "technical" wing. They learned their science, but their engagement with it rested on moral principles and an ethic of commitment, which they juxtaposed with images of the clinical detachment of the scientists and the bureaucrats. "I have a face in my mind for every AIDS-related condition I can describe to you," said Eigo, "… every one the face of a friend." Science and bureaucracy, by contrast, were cold and passionless—epitomized, in activists' eyes, by the FDA's Ellen Cooper, whom some labeled the "Ice Queen."
Steven Shapin has noted, in an analysis of the historical constitution of the expert/lay divide, that the question of who possesses "cultural competence" in science is "one of the most obvious means by which we, and people in the past, discriminate between `science' and `the public….'" The most crucial avenue pursued by treatment activists in the construction of their scientific credibility has been precisely the acquisition of such competence—that is, learning the languages and cultures of medical science. Through a wide variety of methods—including attending scientific conferences, scrutinizing research protocols,
and learning from sympathetic professionals both inside and outside the movement—the key treatment activists have gained a working knowledge of the medical vocabulary. While activists have also insisted on the need to bring "nonscientific" language and judgments into their encounters with researchers, they have nonetheless assumed that the capacity to speak the language of the journal article and the conference hall is a sine qua non of their effective participation. In a learning approach that one activist, G'dali Braverman, has frankly characterized as "ass-backwards," activists often began with the examination of a specific research protocol in which patients had been asked to enroll and, from there, went on to educate themselves about the mechanism of drug action, the relevant "basic science" knowledge base (such as considerations of the viral replication cycle of HIV or the immunopathogenesis of AIDS), and the inner workings of "the system" of drug testing and regulation, including the roles of the pharmaceutical companies and the relevant government advisory committees.
Other activists have explicitly used the metaphors "foreign language" and "foreign culture" to describe their initiation into treatment activism. Brenda Lein, a San Francisco activist, described the first time she went to a local meeting of the Treatment Issues Committee of ACT UP: "And so I walked in the door and it was completely overwhelming, I mean acronyms flying, I didn't know what they were talking about. I thought, `Oh, they're speaking Greek and I'm never going to understand this language.' … Hank [Wilson] came in and he handed me a stack about a foot high [about granulocyte macrophage colony-stimulating factor] and said, `Here, read this.' And I looked at it and I brought it home and I kept going through it in my room and …, I have to say, I didn't understand a word." But after reading it "about ten times," Lein concluded: "Oh, this is like a subculture thing; you know, it's either surfing or it's medicine and you just have to understand the lingo, but it's not that complicated if you sit through it. So once I started understanding the language, it all became far less intimidating."
And indeed, the remarkable fact is that once they acquired a certain basic familiarity with the language of biomedicine, activists found they could also get in the doors of the institutions of biomedicine. Once they could converse comfortably about Kaplan-Meier curves and cytokine regulation and resistance-conferring mutations, activists increasingly discovered that researchers felt compelled, by their own
norms of discourse and behavior, to consider activist arguments on their merits. Not that activists were always welcome at the table—to quote Lein again: "I mean, I walk in with … seven earrings in one ear and a Mohawk and my ratty old jacket on, and people are like, `Oh great, one of these street activists who don't know anything…'" But once she opened her mouth and demonstrated that she could contribute to the conversation intelligently, Lein found that researchers were often inclined, however reluctantly, to address her concerns with some seriousness.