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In her book “Infectious Ideas: U.S. Political Responses to the AIDS Crisis”, Jennifer Brier, PhD, Associate Professor of Gender and Women’s Studies & History at University of Illinois at Chicago argues that “AIDS provides the perfect lens through which to see the complex social and political history of the 1980s and 1990s.” Last year for the US National Library of Medicine (NLM), Brier curated an online and traveling exhibition,“Surviving and Thriving: AIDS, Politics and Culture”. This provided her with an opportunity to revisit her work and use images to share information. Broken down into five section (Affection is Our Best Protection; Doing Science, Making Myth; Government (In)Action; Fight Back, Fight AIDS; and AIDS is Not Over) the exhibition explores the ongoing epidemic in a US context, centered on the experiences of people living with HIV. The title itself coming from a 1987 book written by People With AIDS Coalition, New York. In the interview below, Brier discusses her personal connection to the work, her research practices, and how she understands that AIDS is not over.
Visual AIDS: Your exhibition organizes around people living with HIV/AIDS, specifically around a book entitled Surviving and Thriving which was an insistence that people “could live with AIDS, not just die from it.” How does viewing the politics and culture of AIDS through the lens of people living with HIV impact what is seen and how it is seen?
Jennifer Brier: I want to answer it as a historian who has written about AIDS as well as a person who has experienced the loss of friends from AIDS and has relationships with people living with AIDS.
When Michael Callen and the People with AIDS Coalition published Surviving and Thriving with AIDS in 1988, they were writing about a movement that had its origins in a Gay and Lesbian Health Convention held in Denver in 1983. At this historic meeting (you can see pictures of it in the exhibition and read the Denver Principles), people who had once been called “victims of AIDS,” as was often the case in the press when talking about the AIDS epidemic, organized and pushed back against the tendency to see people with AIDS as unable to advocate for themselves. This became part of a larger strategy to demand and secure care and treatment in the face of profound government and societal indifference to the AIDS crisis. These budding AIDS activists coined the terms “people with AIDS” and “people living with AIDS,” phrases that are so ubiquitous today that we often see only the acronym “PWA.” At the heart of this renaming was the idea that people were not victims of a syndrome, but rather needed to be treated humanely and ethically. It also symbolized the idea that people with AIDS were not be seen a needy or incapable, but rather as agents of change and care in their own lives. Finally, it was a way of talking about the existence of long-term survivors, people who had lived with AIDS in an era when the only treatment available was AZT, and it was given in doses so high as to produce horrible reactions.
Centering the experience of people with AIDS in the exhibition meant naming the centrality of people with AIDS in the epidemic’s history. The history can never accurately be told if we focus only on how the medical or public health professions responded, or just the indifference of the government. We have to remember that people with AIDS have fundamentally changed the course of AIDS, whether in terms of providing care in the absence of state responses, imagining what treatment activism could and should look like, or keeping AIDS in the public consciousness. While far too many people have died doing this work over the last thirty+ years, the identifier “people living with AIDS” remains a critical intervention into how we think about the history of AIDS.
VA: Can you walk us through your research process? What were some of your early curiosities and how did you decide up on what to focus on?
JB: The first place I turned when NLM approached me to curate this exhibition was back to my book, Infectious Ideas. The whole process by which I came to write is too long to go into here, but a short answer is that growing up in the East Village of New York City in the 1970s and 1980s, with parents who were public employees and active in various aspects of progressive politics, meant that AIDS was part of my life as a teenager. The first person close to my family to die, a gay white man named Kevin, was in 1983. I was twelve and have vivid memories of his life and death. A few years later, a few of the men who lived or worked on my block, all men of color, none of whom identified as gay but had been in and out of the criminal legal system, got sick as well. In deciding to take on writing a history of AIDS, first as a dissertation and then as a book, I knew I needed to be able to explain, to myself and others, the larger and longer history that related to my teenage memories. The way I learned to do that in history graduate school, for better and for worst, was to find archives and mine them for historical evidence. I was lucky to find material collected all over the country: in San Francisco at the public library, UCSF and GLBT Historical Society; in Simi Valley California at the Ronald Reagan Presidential Library and Archive; in New York City at the LGBT Community Center National History Archive in the Center; and in Chicago at the Gerber Hart Library and Archives.
Getting to curate an exhibition for NLM meant that I got to revise some of the thinking I’d done for Infectious Ideas. Most notably, this meant that I would have to exchange words for images and figure out how to tell a historical narrative in less than 3,000 words. But again I started in the archive, only this time it was the collection of AIDS prevention posters held at the NLM. I had looked at these when I was working on Infectious Ideas, but had not spent as much time with them as I did for the exhibition. The collection is stunning—sometimes stunningly beautiful, sometimes stunningly hideous—and tells a visual story of how various entities, although often public health officials, helped people understand what AIDS was and was not. Beyond the collection held on the NIH campus, we were also able to track down and use several images early AIDS activists, Michael Callen and Richard Berkowitz, men I’d written about but had never seen writing, How to Have Sex in an Epidemic.
But as I further reflect on the question, I realize that the book was about a group of people I call “AIDS workers,” (a term I use to fuzzy the distinction between AIDS service providers and AIDS activists, especially as both service providers and activists struggled to make arguments about racial and economic justice as central to demands for AIDS treatment and prevention) who were not necessarily people living with AIDS. While many of the AIDS workers I wrote about in Infectious Ideas were also people living with AIDS, I did not focus on them as explicitly as I do in Surviving and Thriving. I am glad that I got a chance to emphasize the experiences of people with AIDS, and do it in a way that will be seen by many people.
VA: Both implicit, with the images you select, and explicit with the exhibition final section, you make clear that AIDS is not over. Is the idea that it is over something you came up against a lot in the creation of the exhibition?
I did not come up against the idea that AIDS is over in the creation of the exhibition, but the idea that AIDS is either over or that no one cares about it anymore is something I hear often, whether in media inquiries or in conversations about my work. I think those arguments often comes in the form of “AIDS is a chronic disease in the United States and a dire crisis in other parts of the world.” The “other parts of the world” piece, is often implied to be the African continent, but is always referred to as “Africa,” as if it is one monolithic place. Put in its simplest form: The crisis is over there, but not here. I find the logic deeply troubling on many fronts, and tried to address some of that in the exhibition, particularly as it relates to AIDS in the United States. (I should say here that the show’s focus on the United States was a matter of space, not desire to talk to about. I would like to see another exhibition developed that might travel with Surviving and Thriving, but that is for another day). One of the clearest ways to see that we do not have sufficient and just health care in the United States is to look at the legacy of the ACT UP claim that “health care is a right!” This demand, one that appeared alongside “get drugs into bodies,” suggests that many AIDS activists refused to see treatment and prevention of HIV/AIDS as separate from other methods for making people healthy. Even with significant programs to address the treatment needs of people with AIDS in the United States, and with the adoption of the Affordable Care Act, people continue to struggle to get adequate treatment and care, not to mention that HIV/AIDS is often only one of the many life threatening conditions people face. Here I am thinking about lack of sufficient housing, access to harm reduction around drug use, and pipelines to prisons and not schools.
VA: Your exhibition comes at a time where there is an increased dialogue in the culture around HIV/AIDS that was not happening in 5 to 10 years ago. What do you think has changed? And what has been some of the response to the exhibition?
JB: I can best speak about the dialogue within history and cultural studies. When I first started writing my dissertation in the mid-to-late 1990s, I found myself in the middle of a huge interdisciplinary conversation about AIDS. By the early 2000s, that really started to teeter off. It seemed like all the academic work on AIDS was happening in the social sciences, behavioral sciences, and medical sciences, but not as much in the humanities. Queer Studies, which in many ways had been built through an analysis of AIDS, had moved into different terrain including discussion of homonormativity and neoliberalism. It felt a little bit like all this new work, whether in Sociology or Queer Studies, seemed uninterested in the critical intervention humanities and arts scholars had made to the field of AIDS studies. So I sort of made my way without knowing what contemporaneous body of literature I would end up in conversation with. Luckily, when my book came out in 2009 it did along side two others by Debbie Gould and Roger Hallas. It felt like a mini-renaissance. The three of us were quite excited about this coincidence and were able to have the books reviewed together in GLQ.
In the last year I have seen this uptick continue. I have just reviewed a manuscript on the history of the myth of Patient Zero for a major press and have an article on AIDS in Chicago to review for the most prestigious US history journal in my inbox.
The reaction to the exhibition has been positive, and I know that the website has been visited 19,000 times, with over 47,000 page views. This is the kind of exposure that I could almost never imagine for my published academic work. I am excited to be able to write for Visual AIDS because this has been a critical site for a conversation about AIDS, arts and culture, especially as we see the production of several exhibitions on AIDS in the last few years, including the rightly vilified "AIDS in New York: The First Five Years" at the New York Historical Society and “Why We Fight: Remembering AIDS Activism” at the New York Public Library.
Please look here to see if Surviving and Thriving is being
shown near you at some point in the next three years. You can also use the site
to book the exhibition for a six-week run.
Jennifer Brier is Director of the Program in Gender and Women’s Studies at UIC, where she is also an Associate Professor of GWS and the History Department in 2009. She specializes in US gay and lesbian history, the history of sexuality and gender, and public history. Brier is the author of Infectious Ideas: U.S. Political Response to the AIDS Crisis, published by the University of North Carolina Press in 2009, and reissued in paperback in 2011.Between 2008 and 2011, Brier co-curated with Jill Austin Out in Chicago, the Chicago History Museum’s award winning exhibition on LGBT history in Chicago that ran from May 2011 to March 2012. Brier is currently at work on a major public history project called History Moves, a community-curated mobile gallery that will provide a space for Chicago-based community organizers and activists to share their histories with a wide audience. This project is designed as a collaboration across and beyond the UIC campus with team members (faculty, students and staff) from the Colleges of Architecture and Design, the Departments of History and Communication, the Jane Addams Hull House Museum, the Read/Write Library, and the Third Coast International Audio Festival. Brier serves as the Co-Chair, with Don Romesburg, of the Committee on LGBT History, an affiliate society of the American Historical Association. She just joined the editorial board of the Journal of the History of Sexuality.