HIV/AIDS in U.S. History: A Conversation about Early Popular Histories of HIV/AIDS

by Jennifer Brier, Julio Capó Jr., Christina Hanhardt, and Dan Royles


Editor’s Note:

The September 2017 issue of the Journal of American History will feature an Interchange entitled “HIV/AIDS and US History.” It brings together ten scholars for a wide-ranging conversation about the history of HIV/AIDS and the way the disease has been covered in historical scholarship. One part of that discussion focuses on the early popular histories of HIV/AIDS and how they were received. This excerpt of that larger conversation details both book and film adaptations of HIV/AIDS, particularly the reception of Randy Shilts’s 1987 book And the Band Played On, and the differing popularity of two 2012 films, David France’s How to Survive a Plague and Sarah Schulman and Jim Hubbard’s United in Anger. Both films offered different perspectives of ACT UP/New York, an activist group formed in 1987 dedicated to ending the HIV/AIDS crisis.

Journal of American History:

Arguably, the two most popularly received accounts of the history of AIDS are Randy Shilts’s 1987 book And the Band Played On and David France’s 2012 film How to Survive a Plague. What has that meant for how the history of the epidemic has been understood? What have been some of the impacts of these narratives? Are there any connections between the narratives and/or the approaches? What does this mean for the interdisciplinary field of HIV/AIDS studies we have been writing about and how historians might (need to) intervene in it particularly?

Julio Capó Jr.

I wonder if it might be useful for us to acknowledge how some of the early scholarship got parts of [early AIDS] history wrong, in effect, and how that shaped the future of the field and the types of responses, methods, and archives it produced. The journalist and community historian Randy Shilts’s influential 1987 book (and later, subject of a similarly popular film) is still heavily cited, read, and assigned. It helped forge a powerful narrative of heroes and villains, as well as chronicling state apathy and violence. Indeed, Shilts also sought to provide answers concerning the origins and causes of AIDS, furnishing claims that proved both false and incredibly dangerous or harmful, including his scapegoating of the Canadian flight attendant Gaëtan Dugas as the notorious “Patient Zero.” This was a dubious accusation even at the time of Shilts’s publication, and historians have more recently and forcefully debunked this myth. In many ways, though, much of the damage was already done; such stories helped reproduce blame-the-victim narratives and urged many politicians and activists to deride and attack sex positivity and promiscuity.

The weight of an “origins story” narrative, so visibly threaded throughout Shilts’s book, perhaps had even graver implications for Haitians living in Haiti and across numerous diasporic communities. While the sciences have discredited the Dugas-as-patient-zero myth, research continues to point to Haiti as the “bridge” that brought the virus into the United States. In addition to the 2016 University of Arizona study by Michael Worobey et al., Jacques Pepin’s 2011 The Origins of AIDS carefully documented how the tracing of subtypes among HIV-1 strains seems to locate Haiti as the site of the virus’s introduction to the United States. Indeed, Haiti has been implicated as central to this story from the start. In March 1983, for example, the Centers for Disease Control included Haitians as the sole ethnic group represented in what soon became known as the dreaded “4-H” club deemed at higher risk for HIV and opportunistic infections (the other three H’s were: homosexuals, heroin and other intravenous users, and hemophiliacs). This association unleashed widespread prejudice and discrimination against Haitians and those suspected of being Haitian.

Both sympathetic assertions and blind spots prompted new directions in the field that Shilts played such a key role in shaping. These new works built on historiographic developments in the areas of empire, race, and post-colonial studies. These efforts extended far beyond Haiti, of course, and several works looked to global colonization efforts, particularly throughout Africa, for answers as well. Paul Farmer’s AIDS and Accusation (1992), with its deep and rich ethnographic research, fought the Haitian stigma regarding AIDS and uncovered how local communities in Haiti interpreted and came to terms with the mysterious disease. He sought to shift attention to historical legacies of racism and colonialism to understanding the roots of Haiti’s link to AIDS.

It’s important also to note how Farmer’s pioneering and necessary work pointed to same-sex sexual tourism, predominantly from North America, as the missing link in this saga of blame assignation in ways that could potentially reify power hierarchies and erase Haiti’s own rich, queer past. Pepin and others—including Carlos U. Decena and Mark Padilla—have since encouraged more nuanced explanations of this and related histories. Indeed, as suggested by the evidence of both greater heterosexual sexual transmission and the assertion that many of the infected Haitians living in the United States did not assume or claim a gay identity, anthropologists in particular have expanded this argument through methods in biomedical, ethnographical, and cultural studies to uncover how transnational migrations, political economies, racism, poverty, neocolonialism and neoliberalism have both fueled AIDS infections in particular spaces and critically shaped, altered, and created queer subjectivities.

Dan Royles

I think it’s interesting to talk about How to Survive a Plague in conjunction with United in Anger, Jim Hubbard and Sarah Schulman’s documentary that uses footage from the ACT UP Oral History Project. They came out at around the same time, and they’re ostensibly about the same part of AIDS activist history. And yet, they’re very different films. United in Anger does a far better job of representing the way that ACT UP framed the fight against AIDS within a broader vision of social justice. However, the film gives viewers less of a narrative to grab onto, and I think might be a little bit confusing for those who are not already familiar with the history of AIDS activism. On the other hand, How to Survive a Plague risks elevating the story of the Treatment Action Group (TAG), an activist group formed in 1991 dedicated to increasing research on treatments for HIV/AIDS, as the story of ACT UP and, in turn, as the story of AIDS activism writ large. At the same time, How to Survive a Plague is a better piece of storytelling, and the emotional beats that it hits—Bob Rafsky’s relationship with his daughter, the “they’re still alive” reveal at the end—are quite powerful, and that matters. Having watched both films with students, my sense is that they connect emotionally more with How to Survive a Plague than they do with United in Anger. Of course, part of our job as teachers is to help students think critically about historical narratives. To that end, I know that some teach How to Survive a Plague alongside Paris Is Burning, and have students compare the ways that race, class, and gender identity shape the stories told in the two films.

Clearly, How to Survive a Plague isn’t the whole story of AIDS activism in the United States—not even close. As scholars writing new histories of HIV/AIDS, it’s our job to make that clear—to showcase the work of women, of people of color, of poor people, and of people who are incarcerated. I think the important lesson to take from How to Survive a Plague is that we need to think not only about what stories we tell, but how we tell them. I would argue that these stories need not be—indeed, should not be—simplistic or closed, but they should be accessible to lay audiences. As we examine the stories of those who have been left out of narratives of AIDS activism, that accessibility becomes all the more imperative. Jennifer Brier’s oral history project and exhibit is a powerful example of this, as she amplifies the voices of women with HIV and making room for the multiplicity of their experiences in the epidemic.

Jennifer Brier

I am so glad Julio wrote that eloquent piece on Shilts’s take on Haiti and the way Shilts’s text popularized several origin stories that have had a lasting impact on how we all understand the history of HIV. Patient Zero is the most obvious example, a story that has very effectively been reinterpreted by Richard McKay and Phil Tiemeyer. McKay’s co-authored piece in Nature, does not, however, make any attempt to change the way Haiti has been represented in origin stories of HIV in places that are black. That raises for me a critical question about how race in general, and blackness in particular, functions in historical accounts of HIV/AIDS.

Shilts is a good place to start, then. Shilts’s analysis functioned as the go-to historical source on AIDS from the time it was published in 1987 to the 2000s. Shilts offered a critique of how gay (not ever LGBT) communities, always white, responded to HIV/AIDS as well as how we understand the federal government’s response. I have written about the latter in what I think is the first essay on AIDS to appear in an anthology about the Reagan presidency, but I think it is worth noting that Shilts’s lasting impact of what we think of as an early “gay history” of AIDS went far beyond Patient Zero and the vilifying of Gaëtan Dugas. It functioned to do what Allan Berube wrote about in “How Gay Stays White and What Kind of White it Stays” in 2001. Shilts described a particular white gay response to AIDS in the first few years of the epidemic, and it became the prime text representing “the gay history” of AIDS that scholars and journalists used to write about the evolution of AIDS between 1981 and 1987.

How to Survive a Plague functions to center whiteness in similar ways. You could watch the whole film and not understand that people of color participated in direct action against AIDS or that the direct action of TAG did not sufficiently address access to drugs, and also potentially and unintentionally empowered big pharma as the central place making “cures” for HIV/AIDS. Dan R.’s comments are very helpful here, although I would prefer screening the film with Marlon Riggs’s Black is, Black Ain’t instead of Jennie Livingston’s Paris is Burning (which I regularly show with Riggs to allow students to understand how various gazes—or camera angles—function in the filming of queer black and brown people).

The question for U.S. historians may be: How do we write a history of HIV/AIDS that is rich with interpretive accounts that insists we learn about people whose lives are not likely to be part of official narratives of activism, while at the same time learning about histories in contexts that provide an analysis of political economy? We must, in the end, figure out how to write those as mutually constituted and refuse false dichotomies between a focus on identity (or even behavior) and political economy. This is why I have tried to write the history of AIDS activism and service as a political history of the recent past. I now very much want to take that approach with me into a women’s history of HIV/AIDS that centers the lives of women living with HIV (a subject which never appears in either Shilts or France).

Dan Royles

To Jennifer’s question about how race functions in the history of AIDS, I think Shilts and France both serve as examples of the way that white gay men have taken on a “model minority” status in the writing of AIDS history. Here the narrative of “tragic gay heroism” (borrowing from Stephen Inrig, although he does not complicate this enough) becomes the baseline of comparison for other responses. In contrast to “tragic [white] gay heroes,” other groups disproportionately affected by AIDS—particularly African Americans—are often found lacking. Some have sought to explain why African Americans did not respond to the disease in the same way, or as quickly, as white gay men, usually pointing to black homophobia and respectability politics within institutions such as the black church.

That comparison has consequences, because it reinforces the idea that African American communities have not forcefully responded to AIDS. In turn, that notion shifts the blame for the disproportionate impact of the epidemic back on to black communities themselves, when we know that this disease is intimately tied to virtually every form of social and structural inequality.

That’s why Jennifer’s work on the San Francisco AIDS Foundation and the Third World AIDS Advisory Task Force is so important—because it shows us 1) that white gay men were blind (and sometimes willfully so) to the ways that their AIDS education and prevention programs excluded gay men of color and 2) that gay men of color organized to challenge that exclusion, and designed their own educational interventions in response. And of course, it means that we need to explore the ways that communities of color responded to AIDS in much greater breadth and depth.

Christina Hanhardt

I want to pick up here on Dan’s helpful comparison of the documentaries How to Survive a Plague and United in Anger because, as Dan describes, the juxtaposition highlights how tensions about what is included in historical scholarship can be tied to how it is told. As Dan says, United in Anger frames the history of ACT UP in a broad social movement context, but How to Survive a Plague gives a compelling narrative that is easier to latch onto. I would argue that this comparison also helps us to consider some of the challenges for traditional historical scholarship posed by the uneven claims to authority, sometimes contradictory social movement arguments, vexed political alliances, and failures of identification and empathy that are all key features of the history of HIV/AIDS. At the same time, I recognize that more experimental or nontraditional approaches to history also have limits: they can leave one less satisfied with what one knows, risk undermining figures with whom readers and viewers might otherwise identify, can feel nonprogressive insofar as they can seem to end where they start, and can prioritize an analysis of meaning-making over providing the information that is crucial to understanding why debates about knowledge matter. As an interdisciplinary scholar who asks questions about the production of knowledge while also valuing traditional historical evidence, these are very important questions to me.

In summary, How to Survive a Plague effectively uses talking heads, a strong sound track, and a small number of identifiable characters to represent goals met and lost in a clear narrative that is deeply moving. In turn, United in Anger offers a mobile group and emphasizes the form of actions over individual intentions or outcomes, thus giving a more open-ended vision of what ACT UP was and what it did and did not achieve. How to Survive a Plague was wildly popular, demonstrating its skill at speaking to certain broad audiences, while United with Anger tended to be the more favored documentary among grassroots activists. As Dan points out, as was the case for many of his students, some viewers find United in Anger hard to follow; this is a common response to experimental work that is often joined by a claim that such difficulty risks losing those who otherwise might be transformed via more conventional forms of identification and information.

But I’d offer that the issues at stake are more than an accessibility versus meta-conceptual dyad. Insofar as the how is linked to the what, one of the biggest issues in discussing the representation of HIV/AIDS and ACT UP in these two films (as well as in our broader conversation about historical scholarship about HIV/AIDS) is the analysis of race and racism. Another key distinction is between analyses that focus on social movements as driven by individual actors set to challenge specific policies or other barriers, and those that try to capture the collective actions of social movements that address both immediate concerns and broader systems of exploitation and power. As scholars have argued elsewhere, including roundtable participant Jih-Fei Cheng, How to Survive a Plague’s focus on white characters fighting for “drugs into bodies” centers individual white gay men as the primary subjects of this history and access to drugs as the primary solution. But not everyone in ACT UP was white, and a range of ACT UP activists pushed back against a narrow frame for “drugs into bodies,” instead looking to feminist and leftist critiques of the inequality intrinsic to the U.S. health care system. In addition, some of ACT UP’s most effective activism addressing how HIV/AIDS affects people of color was done in coalition with activists outside ACT UP.

Accounting for racial difference and racism in How to Survive a Plague would require the inclusion of more people of color, of course, but it would also need to rework its framework of individual heroism, its focus on ACT UP’s collaboration with doctors rather than with other grassroots activists, and the presumption that the humanization of white gay people provides a pathway for empathy for those with HIV/AIDS in general. In other words, it would unlikely be very tidy. This is not to say that United in Anger solves all of these dilemmas; although ACT UP is represented as much more inclusive and varied in its demands, by focusing on scenes of direct action, it too does not spell out some of the more mundane intricacies of strategy and internal division and external collaboration. But it does leave space for more open interpretation.

I think this comparison is useful not only as a way to understand these two films, but also to think about the relationship between traditional historical scholarship, especially that which aims for a popular audience, and interdisciplinary or experimental work. In these contexts, too, a strong narrative based in key characters and the exposure of previously unknown or hidden sources is juxtaposed to scholarship that undermines narrative form or that provides a genealogy of a specific idea or set of shared assumptions rather than a progressive tale. To be fair, this opposition is rarely that stark: traditional historians are much more self-conscious and critical about their sources than those outside the field tend to acknowledge. At the same time, interdisciplinary work is often grounded in extensive primary evidence. But in the relationship between LGBT history and queer studies—the primary fields through which I have come to research the history of HIV/AIDS activism—this tension remains strong. Although not the case with the group of scholars gathered in this conversation, I believe that LGBT history as a field generally has been less than welcoming to queer studies, even among those who hope to open the field, and interdisciplinary queer studies rarely cites LGBT history nor acknowledges its conceptual contributions. Many historians’ critiques have been grounded in worthwhile concerns: that queer studies lacks sustained or empirical evidence and makes claims that it cannot support; that queer theorists do not read historical scholarship and tend to dismiss it; that undermining knowledge production in an arena in which knowledge accumulation has been so limited is dangerous; that replacing storytelling with a study of rhetorical position is less engaging to readers; and I could go on. But queer studies’ arguments are also worthwhile: that the kind of identification provided via conventional narrative is not universal and obscures its exclusions; that humanistic concerns about empathy require an analysis of the category of the human; or that a focus on interiority or intention can displace an examination of the broader effects of arguments and actions, to name but a few concerns.

The history of HIV/AIDS puts pressure on our dominant understandings of agency, identity, and knowledge, and this ultimately means that these differences in representational approaches—visual or written—might be thematized and made productive in our work. Then, to return to some of the themes we discuss in our JAH roundtable, we might see history and memory as different but mutually useful frames; empirical evidence as necessary but also always open for challenge; and we might continue to find new ways to theorize agency and structure together.

And, I bet, that will involve not only reading more of each other’s work, but also reading scholarship that is not in LGBT history or queer studies at all, where so much of this kind of intellectual work has happened, be that in the history of sexuality more generally, in critical race theory, or in science studies, as but a few examples. It will also involve looking back again at the key archive of AIDS activist video (that Jih-Fei, Alexandra Juhasz, José Muñoz, and so many others have also studied), and to the rich variety of oral history projects previously mentioned (Schulman and Hubbard’s ACT UP Oral History Project and Jennie’s oral history of women and HIV) and many others inside and outside of academic institutions.

Editor’s Note:

If you are interested in learning more about ACT UP/New York, visit the ACT UP Oral History Project. Also, be sure to check out the rest of the conversation on the history of HIV/AIDS in the September issue of the Journal of American History.


JENNIFER BRIER directs the Program in Gender and Women’s Studies at UIC, where she is also associate professor of GWS and History. Brier is the author of Infectious Ideas: U.S. Political Response to the AIDS Crisis (2009). She is at work on a major public history project called History Moves, a community-curated mobile gallery.

JULIO CAPÓ an assistant professor of history at the University of Massachusetts Amherst. He is the author of Welcome to Fairyland: Queer Miami before 1940(2017). He is currently writing a book that places the 2015 Pulse nightclub massacre in the long history of violence, erasure, and displacement of queer Latina/o/x community.

CHRISTINA B. HANHARDT is an associate professor in the Department of American Studies at the University of Maryland. She is also the author of the book Safe Space: Gay Neighborhood History and the Politics of Violence (2013).

DAN ROYLES is an assistant professor of history at Florida International University. He is the author of the forthcoming book To Make the Wounded Whole: Political Culture of African American AIDS Activism. He is currently working on an oral history of African American AIDS activists and is building an online archive of materials relating to HIV/AIDS in black communities.