The African American Struggle Against HIV/AIDS

A grassroots march for Gay Pride with emphasis on Black Lives and Trans Lives, Chicago, June 2020. (Photo: Shutterstock).

The devastation wrought by the COVID-19 pandemic over the past year has intensified scrutiny of racial health inequities in the United States. Reports surfaced within weeks of the pandemic’s arrival about racial disparities in its impact, which have persisted. As The Atlantic’s COVID Tracking Project reports, African Americans have died at roughly 1.5 times the rate of whites nationwide—echoing a tragic legacy of accelerated illness and death within Black communities that stretches back centuries. As historians such as Harriet Washington and Samuel Kelton Roberts have shown, these patterns have deep roots in the afterlife of slavery, Jim Crow segregation, and ongoing institutional racism. 

In this context, as activists and policymakers search for solutions to these entrenched inequities, histories of African American health activism take on new urgency. Works such as Alondra Nelson’s study of the Black Panther Party’s fight against medical discrimination have offered critical insights into the successes and setbacks facing Black activists at the intersection of health and racial justice. In recent decades, the HIV/AIDS epidemic offers the most relevant example of widespread popular efforts by Black communities to grapple with the devastating impact of a deadly disease exacerbated by poverty and structural oppression. Fortunately, Dan Royles’ study of African American organizing against HIV/AIDS has arrived at an ideal moment to consider its powerful stories and urgent lessons. 

To Make the Wounded Whole: The African American Struggle Against HIV/AIDS explores the diverse strategies by which African American activists mobilized against the epidemic from the 1980s through the early 2000s. The book comprises seven chapters, each focused on a distinct organization or set of protagonists, linked with reflections on common themes and divergences. The source base includes a rich lode of organizational and personal papers, movement publications and newspapers, and oral history interviews with the activists who form the heart of the stories. The resulting richly detailed narratives trace a complex web of personalities and groups, beset with conflict and often decimated by illness, yet tirelessly fighting to educate, agitate, and heal. 

Whereas Cathy Cohen’s analysis in The Boundaries of Blackness, one of the major works on African Americans and HIV/AIDS, criticized the “breakdown” of Black politics, Royles emphasizes how the crucible of the epidemic also catalyzed their reimagining. Although some Black church leaders remained silent, others organized within religious communities to speak out. While some African American men who had sex with men faced ostracism and condemnation, the years of the epidemic also saw an unprecedented visibility of Black gay men’s organizing and culture. In the face of government indifference, concerns for respectability, insensitive white activists, and mounting grief and loss, African American women and men of different sexual orientations and religious beliefs rose to the challenge, forging a diverse range of interventions in defense of Black health and lives.  

Royles opens his narrative in Philadelphia, as conflicts erupted in the epidemic’s early years over how race and class shaped the agenda of AIDS activism. The first chapter focuses on Blacks Educating Blacks about Sexual Health Issues (BEBASHI), an organization undertaking AIDS prevention by and for the city’s Black community. While early efforts had aimed at representing a more racially diverse set of images within outreach targeting the gay community, BEBASHI assumed that Black communities would respond to appeals based on racial over sexual identity, launching outreach programs at Black churches, public housing, schools, and neighborhood block parties. By contrast, the San Francisco-based National Task Force for AIDS Prevention (NTFAP), the subject of the second chapter, emerged as a multicultural organization focused on gay men of color. Established under the aegis of the National Association of Black and White Men Together, it designed programming specifically relevant to Black as well as Latino, Asian/Pacific Islander, and Native American gay men. 

Whereas BEBASHI emphasized Black community without reference to sexual identity and NTFAP focused on gay identity in a multicultural frame, the New York City-based Gay Men of African Descent (GMAD) based their approach on a Black gay male identity in which both race and sexuality formed integral parts. Drawing on the work of Darius Bost, the third chapter locates GMAD within the Black gay renaissance of the 1980s-90s, exploring how the group imagined diasporic linkages between African and African American history and culture, while aiming to address the root causes of the health crisis facing Black gay men. Each chapter examines the funding challenges that faced grassroots groups and the growing pains, truncated vision, and political vulnerabilities that arose when such groups transitioned into formalized, top-down nonprofit organizations.

As African American activists worked to educate their communities, others aimed to interject a distinctive Black approach to healing and medical research. The fourth chapter charts the startling story of Kemron, an AIDS treatment first announced in Kenya in 1989, and the campaign by the Nation of Islam to promote and clinically test it in the United States. While the drug ultimately proved a failure, Royles convincingly argues for the story’s significance within the broader narrative by locating it within the long history of medical mistreatment and exploitation of African Americans, and the resulting—often very reasonable—suspicions of the white-dominated medical science establishment. The chapter crafts a particularly nuanced narrative that sympathetically renders how deep legacies of racism shaped Black responses to AIDS and clinical medicine.

The final chapters link three stories of African American AIDS activism that expanded into transnational engagement with African organizations. Balm of Gilead, founded by a health care worker in Harlem to engage Black clergy in conversations about AIDS, managed to break the silence and catalyze non-judgmental dialogue about the disease in the church. However, when they expanded internationally to five African countries, they found their efforts to push the church in a more inclusive direction sidestepped or lost in translation. 

Even as the AIDS activist movement declined in the US in the mid-1990s, ACT-UP Philadelphia emerged as a vital force within national and global AIDS organizing as it mobilized a largely African American base of activists around both local and global issues impacting communities of color. Royles complicates historian Jennifer Brier’s analysis about the shift in the epicenter of global AIDS activism from the US to the Global South by the late 1990s by documenting how the multiracial group effectively centered global trade policies and their consequences for African and Asian lives. The chapter skillfully demonstrates not only the powerful impact that ACT-UP Philly leveraged on national and global politics, but how its reorientation towards a base of poor Black activists shaped its approaches and priorities. 

The final chapter explores SisterLove, an Atlanta-based Black women’s health organization. Rooted in a feminist model of self-help adapted to the specific needs of Black women, its programming proved so successful that it expanded to South Africa and supported women’s education around AIDS on the continent. Royles describes the challenges faced by these groups around religion, sexuality, and postcolonial power imbalances as they attempted to partner with African organizations to stem the tide of the pandemic among Black communities globally. Despite failures and challenges, the efforts of these activists reveal the enduring power of diasporic imaginings within African American politics.

Ultimately, Royles argues, the African American struggle against HIV/AIDS could never be a single-issue battle: it necessarily had to confront white supremacy, patriarchy, poverty, homophobia, and other systemic oppressions simultaneously. This severely challenged embattled activists who in many cases were fighting for their own lives; yet it also forged enduring organizations and catalyzed cultural changes within and beyond African American communities. To survive HIV/AIDS, African Americans had to do more than simply get drugs into bodies; they had to—in the words of the spiritual that gives the book its title—strive to make the wounded whole.

Royles notes that he intends the book as a—rather than the—history of African American AIDS activism. Despite the richness of his narrative, many stories remain untold. We learn little, for example, about organizing outside of major cities, how the responses of other Black activist organizations to the epidemic evolved over time, or the perspectives of the African organizers with whom African American AIDS activists attempted to forge partnerships. 

Yet the book’s strength lies not in an exhaustive account or unified narrative, but in the skillful comparison of the diverse strategies undertaken by African Americans to fight the devastation of HIV/AIDS. If the 1980s and 1990s saw a breakdown of Black politics under the strain of the epidemic, it also saw a remarkable flourishing of creative and effective activism that broke silences, saved lives, affirmed marginalized identities, and shook the halls of power. 

Today, as we confront the most severe pandemic of our era amidst a national reckoning around the enduring power of white supremacy over Black lives, the heartbreaking and inspiring stories of a generation of African American AIDS activists offer critical guidance to our struggles for health and racial justice today. 

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Nikita Shepard

Nikita Shepard (they/them) explores histories of gender and sexuality, LGBTQ communities, social movements, data and surveillance, and radical politics in the twentieth century United States and beyond.