The Leading Edge: Dan Royles on African American AIDS Activism

February 25, 2014, 1:44 pm

Welcome back to the Leading Edge! Today, Dan Royles of the University of Angers talks about African American activism during the AIDS crisis. Dan’s is the last Leading Edge I have scheduled, so send your projects and ideas in, or I might have to put up a big blank space next week. Link to form and process here.

Photo by Kaytee Riek
Screen shot 2013 02 13 at 10 52 33 am

AIDS is killing African Americans. In 2011, African American men were diagnosed with HIV at a rate almost eight times that of white men, while the rate of HIV diagnosis among black woman was twenty times that of their white counterparts. [1] Despite the widespread notion, propagated by early media coverage of the disease, that AIDS primarily affects white gay men, the disease has disproportionately affected African Americans since doctors first identified it in 1981. However, scholars of AIDS politics have almost entirely ignored any organized response from black communities themselves. [2]

My book manuscript, titled ‘Don’t We Die Too?’: The Political Culture of African American AIDS Activism, fills that silence, as I reveal the largely untold story of African Americans AIDS activists’ fight against the spread of HIV and AIDS in black communities, both in the United States and around the world. Covering the period from 1985 to 2003, I describe the ways that they drew on the language and tactics of the Civil Rights and Black Power movements to fight HIV and AIDS, even as they contested and renegotiated the social and spatial boundaries of black community. Their story thus traces shifts in black politics and social justice organizing at the end of the twentieth century, and points to the ways in which people construct identities, affinities, and communities through the embodied experiences of race and illness.

In the fight against AIDS, African American activists confronted a problem that almost could not have been more complicated. As a disease reportedly from Africa and spread through sex and drug use, AIDS intersected with centuries of racial oppression that had been justified by ideologies of sexual difference, deviance, and medical pathology. The new epidemic also called up histories of physical exploitation and medical experimentation, from the Atlantic slave trade to the Tuskegee syphilis trials. In one general approach, activists tried to bring AIDS to the attention of black communities by locating the disease within this very history, as they linked it to other forms of inequality, including poverty, racial discrimination, and the dissolving social safety net. In this way, some African American AIDS activists positioned themselves within a global underclass of people harmed by the legacies of empire and the structural changes to the world economy wrought by neoliberal trade regimes and international business and finance groups such as the World Trade Organization and the International Monetary Fund. For example, in the late 1990s and early 2000s, the mostly African American members of the AIDS Coalition to Unleash Power (ACT UP)’s Philadelphia chapter joined forces with anti-globalization groups, linking local issues of Medicaid privatization and prescription drug access to United States policy toward Africa, including trade sanctions against countries that produced their own generic versions of expensive HIV drugs patented in the West.

On the other hand, many African American AIDS activists believed that Africa, as a place of ancestral origin, could provide a set of common values and symbols to unite and educate people of African descent around the goal of stopping HIV/AIDS. Some drew on the *nguzo saba*, the seven principles outlined by Maulana Karenga in 1966 to guide the pan-Africanist holiday of Kwanzaa, to formulate Afrocentric HIV prevention and education programs. Others looked to Africa for an outright cure to the disease, believing that the continents’ doctors could produce AIDS remedies according to holistic healing principles, which would be more effective for black patients than the toxic medications produced by Western scientists. Still some others carried their HIV prevention programs across the Atlantic, advising health workers and agencies in Africa based on the lessons they had learned through their work in the United States. Thus, Africa could be a resource for African American AIDS activists crafting HIV interventions or looking for new medical treatments for black communities within the United States, as well as a target for the energies of those who sought to expand their prevention programs throughout the Diaspora.

One of the biggest challenges in telling this story was the lack of available sources. To help ameliorate that problem for researchers working the history of AIDS activism in the future, I launched two additional projects that help to document the work of African American AIDS activists. The African American AIDS Activism Oral History Project preserves the stories of African American AIDS activists, as told through videotaped interviews. So far, I have collected oral histories from over thirty black public health professionals, policymakers, and community organizers who have been active in the fight against AIDS among African Americans. Temple University’s Urban Archives will house the transcripts and recordings from the project, for use by future scholars and the public. On the other hand, the African American AIDS History Project (twitter: @blackaidshist) is a digital archive that collects and preserves the history of black communities’ experiences with AIDS in the United States, including personal papers and ephemera contributed by oral history narrators. The project uses Omeka, the Center for History and New Media’s web archiving and publishing platform, which also allows other users to upload items from their personal collections, so that they can share and preserve records of their own AIDS activism that might otherwise be lost.

As they addressed AIDS, a “cross-cutting issue” that highlighted divisions and divergent interests among African Americans with respect to sexuality and illicit behavior, African American AIDS activists redrew the contours of black politics. Some claimed inclusion for those who had been marginalized; some placed the epidemic among African Americans within an array of global contexts; some did both. By confronting the epidemic on the terrain of culture and community, they challenged and renegotiated the meaning of blackness itself, in complex and sometimes contradictory ways. At the same time, as they fought for resources with which to stop HIV and AIDS from spreading within their communities, they struggled over the place of blackness amid the shifting politics of race, class, and health in both post-Civil Rights America and an increasingly interconnected global society. Telling their story does more than just add a new set of actors to an emerging historiography; it yields a more expansive and radical picture of AIDS activism in the United States overall.

Dan Royles (twitter: @danroyles) received his B.A. with honors in history from the University of California, Berkeley, in 2006, and entered the doctoral program in American history at Temple University in 2007, working with Professor Beth Bailey. He’s been writing about African American AIDS activism since 2009, and defended his dissertation, “‘Don’t We Die Too?’: The Political Culture of African American AIDS Activism” in October 2013. While completing his dissertation, he held fellowships at the Center for the Humanities at Temple and the Center for Historical Research at the Ohio State University. For the current academic year, he’s a lecturer in English and History at the University of Angers, in western France. In early 2013, he raised almost $7000 for the project through a Kickstarter campaign. ( he also blogs for the Chronicle, over at Vitae, and he recently joined the editorial board of


[1] U.S. Department of Health and Human Services, Office of Minority Health, “HIV/AIDS and African Americans

[2] There are, of course, important exceptions. Cathy Cohen’s classic Boundaries of Blackness described many of the obstacles that prevented national civil rights groups like the NAACP and the National Urban League from addressing AIDS. This project looks instead at the grassroots level to find diverse responses to the epidemic from within black communities. Jennifer Brier’s Infectious Ideas describes the conflicts over race that arose within both AIDS service organizations and the AIDS Coalition to Unleash Power (ACT UP). This project builds on her work by exposing similar tensions elsewhere, and explores the creative ways that African American AIDS activists forged their own HIV prevention programs specifically targeted to black communities.

Kaytee Riek

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