Interview with Steven Epstein

Abstract

Steven Epstein is a professor of sociology and the John C. Shaffer professor in the humanities at Northwestern University.WENDEL-HUMMELL: We're going to start with an easy question here. Grad students are interested in how professionals and people who have really made it far in the field have gotten interested in the topics they're working on. So how did you initially get interested in AIDS activism, which turned you on to these other medical, social movements?EPSTEIN: Well, when I graduated from college I moved to San Francisco, partly with the idea of living somewhere I hadn't lived before, but definitely part of the idea was to experience the kind of gay community that, particularly at that time, San Francisco represented in contrast to other parts of the country. I mean now I think one can find gay communities in lots of places. It was somewhat harder then. So, I arrived in 1983, which was an interesting time, but also a very complicated time because the AIDS epidemic had begun in 1981. And, by 1983, although in most parts of the country it was not entirely visible, in San Francisco it absolutely was. And there was a lot of worry, a lot of discussion. And right away I began to see people who looked very visibly sick, who had the lesions from Kaposi's sarcoma visible on their faces, on their arms, and so on. So I was very conscious of the kind of impact the AIDS epidemic was having on the place I was living.After spending a couple of years hanging out in San Francisco, I started graduate school just across the bay in Berkeley; and fairly early on, I came to the realization that most likely I would write a dissertation that took up the topic of AIDS. I felt that what sociology can do best is tackle pressing social issues, and I wanted to do something that had some relevance for the community that I was a part of at the time when it was gripped by something that was really quite overwhelming. So, I concluded that sociology really presented me with the opportunity to pursue a topic that mattered, and that was timely and urgent. At the same time, I had become interested in a set of theoretical questions inspired by the work of Foucault and Bourdieu that had to do with the politics of knowledge in different ways. And more specifically, I began to think about the politics of expertise. I then began to put this together with my observations. We're now looking forward a few years-it was 1987,1988,1989- as I witnessed in San Francisco the emergence of a kind of activism that impressed me tremendously, and that seemed to be centered around not just a challenge to conventional forms of expertise but also the assertion of a kind of lay expertise by the activists themselves, a sort of hybrid form of expertise. They were drawing on their own experiences, for example, as people living with HIV, but also they were appropriating the knowledge claims of the credentialed experts, the official experts. And so I would go to the activist events where people would give lectures about the clinical trial process explaining what a phase 1, 2, and 3 trial was, and then they'd begin their critique of AIDS research and everything that was wrong with it. Not just from an ethical standpoint, and not just politically, but also scientifically. And I found this kind of fascinating, that people could immerse themselves in these rarified domains of expertise.And so, taking the substantive interest in AIDS together with this intellectual and theoretical interest in questions of knowledge politics and the politics of expertise, I began to fashion a dissertation that looked at credibility struggles in the domain of AIDS and AIDS research. I asked: Who managed to speak credibly about different aspects of AIDS at different times, from the beginning of the epidemic forward? Who was able to speak credibly about just what this new disease was, and what caused it? Who was able to speak credibly about how we should be treating it, and how research in virology and immunology should proceed? …