How to Survive a Plague

by Dan Royles

The ACT UP/TAG documentary How to Survive a Plague, which has a theatrical release set for September 22, has an official trailer…

…as well as a tumblr of ACT UP images that also invites users to submit their own artwork about current issues. 25 years later, the posters that ACT UP and the associated art collective Gran Fury put together are not only arresting, but sadly still relevant.

Gran Fury poster from 1988. Source: How to Survive a Plague
Gran Fury poster from 1987. Source: How to Survive a Plague

All signs point to this film being an out-and-out tearjerker; the trailer alone made me cry. But the larger point seems to be not just to elegize a movement and the millions lost to AIDS, but to inspire a new generation of activists to address their own social justice concerns. In his review, Frank Bruni testifies to the film’s sense of hope for the potential of mass action to effect real change. Indeed, last year’s Occupy movement seemed to echo ACT UP in its tactics and targets, if not in the precision of its message, and the two groups collaborated on an action in April and one over the Fourth of July, and members of ACT UP Philly helped train Philadelphia Occupiers in direct action methods when the encampment was in place late last year. While ACT UP has largely faded outside of a few strongholds in the urban mid-Atlantic (ACT UP Philadelphia being the only continuously active chapter, by their own claim) the growing economic inequality in the United States coupled with the energy of Occupy protesters has some hoping that a new truly progressive politics might be possible in this country. Whether it will materialize, and whether it will in the end look anything like ACT UP or Occupy remains to be seen.

Incidentally, my goal in undertaking the African American AIDS Activism Oral History Project and African American AIDS History Project is also to inspire, as well as to inform. Of course, the interviews that I conduct are a critical piece of the research for my dissertation. But beyond that, by recording voices that have been left out of many popular and academic accounts of U.S. AIDS activism and collecting digital copies of materials through the African American AIDS History Project site, we’re creating a repository of materials that will not only be available to scholars, but will hopefully inspire people to get involved with important issues at a grassroots level.

Cross-posted at Ye Olde Royle Blog.

FRONTLINE: AIDS in Black America

by Dan Royles

PBS recently aired Endgame: AIDS in Black America as part of its documentary series FRONTLINE. Viewers unaware of just how prevalent HIV and AIDS are in black communities may be shocked to learn that today half of new HIV cases in the United States, including two-thirds of those among women and 70% of those among youth, occur among African Americans, who make up only about 13% of the national population. These numbers are nothing new. As filmmaker Renata Simone makes clear, when doctors initially identified AIDS among gay men in 1981, they built a case definition for the new disease around the opportunistic infections presented by those first patients, inadvertently precluding many women, who suffered from different ailments, from receiving AIDS diagnoses. By the time that the Centers for Disease Control added female-specific infections to the case definition in 1993, the severity of the AIDS crisis among women had been undercounted for twelve years. Given that black women account for the majority of women with HIV and AIDS in the United States, the underrepresentation of women with AIDS led epidemiologists to underestimate the severity of the disease among African Americans as well. Moreover, as white gay men became the public face of AIDS in popular media accounts of the epidemic, many African Americans came to see the epidemic as one that would never affect them personally.

In Endgame, this sense of insulation from AIDS comes across most poignantly in the firsthand stories of women contracted HIV through unprotected sex with boyfriends or husbands who either did not know or did not disclose their own HIV positivity. However, Simone also gives voice to a wide range of experiences of AIDS among African Americans. Viewers hear from HIV positive gay men, a social worker illegally distributing clean syringes in Atlanta, young adults who contracted the virus in utero and now are coming of sexual age, as well as a host of public health experts, doctors, preachers, and activists.

Simone connects these individual stories to broader the broader social, cultural, and political forces driving the AIDS epidemic in black communities. For example, viewers see Alabama educators discuss their commitment to the state’s abstinence-only sexual health curriculum and then meet Marvalene, a young HIV-positive woman who explains that the textbook for her wellness class in high school showed only pictures of an African child and an emaciated white gay man in its discussion of AIDS. Viewers also hear from HIV-positive black gay men of different ages who trace their drug use and risky sexual choices to the various degrees of homophobic rejection they faced at home, school, and church. Failed education and homophobia represent only two nodes in a dense web of interrelated factors that underpins the racial disparity in HIV/AIDS in the United States, which Simone ably elucidates through interviews with longtime researchers and activists such as Robert Fullilove of Columbia University, Phill Wilson of the Black AIDS Institute, and Dázon Dixon Diallo of Sisterlove, Inc.

Putting the epidemic in historical context, Fullilove testifies to the economic dislocation that many black communities faced in the 1970s and 1980s, which fueled a growing drug trade as a source of income for black men who couldn’t find jobs in the licit economy. The explosion of crack in particular during the 1980s left many infected, as users (particularly women) hard up for a fix turned to sex work to satisfy their habits. Blaming crack for urban crime rates, lawmakers passed harsh sentencing laws for possession and distribution of the super-addictive drug, landing many black men in prison, where sex among inmates is common but condoms nearly absent. Upon release, they return to communities experiencing gender imbalance due to the disproportionate incarceration of black men, in which women feel disempowered when it comes to negotiating monogamy and safe sex, in part because there are so many fewer men than women. Two interviewees from late in the documentary hit the nail on the head. Dr. Lisa Fitzpatrick argues that the structural factors driving the epidemic demand structural solutions, while another interviewee describes AIDS as a “string” running through the fabric of black communities, highlighting the lingering racial inequalities in American society.

Both women are right, although like the statistics on AIDS in black America, their arguments are nothing new. For much of the epidemic, AIDS activists of color in particular have used AIDS as a means by which to draw attention to persistent issues of inequality in their communities, often putting issues like access to housing, education, and basic medical care at the forefront of their efforts. As Jennifer Brier has argued, they sometimes couched their work in an international context, advocating for global justice in the epidemic by addressing the structural inequalities faced by African Americans and people throughout the global south alike. As Bambi Gaddist of the South Carolina AIDS Coalition tells Simone (though in a different context), “I’m in Africa right now. As a state, I’m there. Sometimes, my staff feels like we’re there. Every time we test another young person positive, we’re there.”

Though Simone spends a great deal of time and care laying out the context for the disproportionate impact of AIDS on black America, in the film she gives very little attention to the political response of African Americans to the epidemic. In an early oral history for my own dissertation on the political culture of black AIDS activism, an informant lamented that to read what has been written on AIDS politics, one would think African Americans let the disease “steamroll over” their communities, and to some extent Endgame reinforces that myth. However, the supporting materials, including an excellent timeline, on the FRONTLINE website begin to flesh out that history of activism.

Also absent from Endgame are the voices of HIV-positive straight black men, save for Magic Johnson and the “bornies” who contracted the virus before birth. Otherwise, they appear (or rather do not appear) as duplicitous off-screen figures who fail to protect their female partners, or in the case of incarcerated men, as possible vectors of infection once they re-enter their home communities. Even the inmates who do appear on screen are shown speaking only to a doctor, who in turn addresses the camera in discussing their potential for spreading the epidemic further. Representations like this arguably do more harm than good. Making a serious dent in AIDS numbers means empowering everyone who is affected to openly talk and engage in safer sex, and that means straight men as well as women and gay men.

Altogether, Endgame is a thoughtful and emotionally powerful examination of AIDS among African Americans that does justice to the complexity of the epidemic and the challenges that lie ahead in the fight to stop it. It’s worth reiterating, however, that the disproportionate impact of AIDS on black communities–and black women in particular–is nothing new. Nevertheless, it seems as though almost every piece of reporting on HIV/AIDS among African Americans trumpets similar statistics as though they were some new revelation about the “changing face of AIDS.” Is this simply the persistence of the disease’s initial framing as “gay cancer,” as Simone suggests, or does it speak to a more pervasive inattention to the inequalities in American society that continue to drive the epidemic? The real endgame here seems to be that to real get to the heart of the problem, we need to address some very deep structural problems in the United States, and that kind of change doesn’t come easily.

Read more: Kenyon Farrow has a more critical review of Endgame on his personal site. Right after the documentary aired, Gawker put up cash to find out who gave HIV to Magic Johnson. Not to overuse a tired phrase, but if that’s the big question you took away from this film, you’re doing it wrong.

Note: A different version of this piece originally appeared at Ye Olde Royle Blog on 12 July 2012.