The Roots of African American AIDS Activism: On Dan Royles’s “To Make the Wounded Whole”

THE FINAL CHAPTER of To Make the Wounded Whole: The African American Struggle Against HIV/AIDS, a new book by the historian Dan Royles, tells the story of SisterLove, a collective founded in 1989 by the esteemed activist Dázon Dixon Diallo. At its founding — and in the years since — SisterLove addressed the need for a movement specifically focused on Black women’s health. Based in the South, SisterLove acknowledged and addressed the pressures, prejudices, blockades, and biases experienced by Black women in the areas of sexuality, health care, and human rights. The organization took a global view of health issues, acknowledging disparities between countries and regions alongside those among race, gender, and class. SisterLove aimed its efforts toward “women who had been marginalized, including sex workers, incarcerated women, and women on welfare,” Royles explains, adding that in doing so “the group pushed at the boundaries of respectable Black identity to make room for those in need of sister-love.”

Though the discussion of SisterLove concludes Royles story both thematically and chronologically, his detailed account of how the organization learned from the struggles of those that preceded it underscores how the magnitude of the HIV/AIDS crisis and disparities in prevention, care, and treatment from the prior century only continue in the new millennium. The epidemic — initially perceived by many as primarily afflicting white gay men — continues to impose a disproportionate burden on African Americans. In 2016, an estimated half of Black gay and bisexual men were expected to contract HIV at some point in their lives. In 2017, Black women were nearly 15 times more likely to be diagnosed with HIV than white gay men.

Royles’s project is of grand and urgent scope. He writes a history of African American reactions to HIV/AIDS over the past 40 years — historicizing protest, conspiracy, denial, structural inequity, and countless forms of bias — while also capturing a movement in progress. He hopes his book, one of the first works to study this topic, will be received as “a book about African American AIDS activism” rather than “the book on African American AIDS activism.” To Make the Wounded Whole — with its seven case studies on moments in the movement, each detailed, finely researched, and compassionately written — engages in a rich conversation about Black activism within the AIDS epidemic across almost half a century.

Royles sets the terms for his study early on: the book is much more about activism than it is about the epidemic itself, and his depiction of activism is drawn largely from his original research, which proves a more politically and emotionally compelling project. Further, Royle’s structure situates this activism within global justice movements, giving the book a helpful transnational perspective. “African American AIDS activists participated in this process and used those same discourses to challenge global capitalism, which fueled the inequities that made the AIDS epidemic worse,” he writes of the processes of organization and protest. “African American AIDS activists self-consciously used the language of globalization and diaspora to bring attention to the fight against AIDS among people of African descent, both at home and abroad.” In this international portrait, Royles utilizes diaspora as a methodological framework for tracking social development in an increasingly globalized world. Looking beyond national borders, Royles acknowledges a worldwide network of effects on African American AIDS activism; and a chapter on Kenyan doctor Davy Koech’s drug Kemron focuses on how a medication developed and tested in Africa makes its way to the United States, with varying receptions across the country.

Early activists mobilizing against HIV/AIDS in African American communities faced mountainous hurdles in their work. These activists — health workers, researchers, queer people, social workers, and others — “approached the epidemic through the injuries of inequality that were a feature of everyday life in many Black communities,” Royles writes. In a chapter focused on Rashidah Hassan, a Philadelphia nurse and organizer who worked to emphasize the disproportionate effect that HIV/AIDS had on Black Philadelphians, Royles recounts in detail the ingrained racism of Philadelphia’s gay scene at the time: as Black gay writer Joseph Beam — who, alongside Isaac Julien, Audre Lorde, Essex Hemphill, and Marlon Riggs, wrote and created art on the act of being Black and queer during the epidemic — observed in 1986, “the Philadelphia AIDS Task Force has trouble getting AIDS information to North Philadelphia, [and] the New York City Gay Men’s Health Crisis outreach [didn’t] quite make it to Harlem.” As such, activists like Hassan had difficulty communicating information about HIV/AIDS to Black people, queer and not. She believed that it was race, and not sexuality, that primarily structured these queer people’s lives, so she founded Blacks Educating Blacks About Sexual Health Issues (BEBASHI) in 1985, an advocacy organization that emphasized, as she did, “racial solidarity over sexual difference,” as Royles puts it.

Not all groups discussed in the book worked specifically in Black communities, though. In the Bay Area, activists from the San Francisco chapter of the multiculturalist National Association of Black and White Men Together (NABWMT) joined with Latinx, Asian American, and Native American activists to create the Gay Men of Color Consortium (GMOCC) in 1989, a group that “developed cooperative strategies” to organize and educate around plenteous social issues, HIV/AIDS most centrally. As much of the early public health educational resources were directed at explicitly gay (and often implicitly white) organizations from which queer people of color faced exclusion on multiple fronts. Such exclusion made “both self-esteem and the self-efficacy to consistently practice safer sex that much harder to cultivate,” Royles explains. Groups like the GMOCC tailored their approaches to communities in the style and tenor of their organizing practices as well as in their educational programming. Building on the work of Brazilian writer and activist Paulo Freire, the group’s advertising and educational efforts sought to, in their own words, “deliver a credible message, build skills, promote self-esteem and thus empower both the individual and the community to create a healthier set of behavioral and cultural norms.”

Not all organizations at the time focused on adversity, and telling these stories is part of the contribution of Royles’s book. To take one example, Gay Men of African Descent (GMAD), a group founded in 1986, focused on singularity and resiliency. Emerging from the “Black gay renaissance” of the 1980s, GMAD sought to create community among Black queer people with roots in the Black Power, gay liberation, and lesbian feminism movements. GMAD took inspiration from Joseph Beam’s assertion, indelibly preserved in Marlon Riggs’s Tongues Untied, that “Black men loving black men is the revolutionary act of the Eighties.” Royles argues that the work of groups like GMAD relied on cultural pride in an “attempt to suture the wounds of diaspora and create a sense of Black gay wholeness all at once.” GMAD embraced ideas of a worldwide African community connected by diaspora, seeking strength in pride. Specifically, embrace of — and definition of — a shared African descent, to use the group’s own term, in addition to queerness, could bring strength to those facing discrimination and disadvantage: Royles claims that “GMAD’s use of Swahili phrases and Yoruba iconography speaks to a global community of Black gay men that was more imagined than material.”

This observation points us toward the book’s most ambitious argument, one acknowledged in its title: that the struggle against the HIV/AIDS epidemic found precedence in and built upon the foundations of centuries of activism by Black Americans. “As African American activists confronted AIDS, they aimed to make whole communities that were divided by homophobia, sexism, and classism,” Royles writes.

At the same time, by putting their work in a diasporic context, they struggled to heal older wounds, ones that stretched back through centuries of oppression to the beginning of the Atlantic slave trade. And by confronting AIDS as a problem of global inequality, African American activists sought to make whole a world wounded by a history of plunder, from the European empires that grew rich off the labor of enslaved Africans to the multinational corporations that dominate global markets.

This idea — that African American activism responding to HIV/AIDS is a part of a centuries-long struggle for justice, for health, respect, and liberation — is the strongest and most resonant lesson of Royles’s book. “Including African American AIDS activism in the larger story of the epidemic also expands our view of political responses to AIDS backward in time,” Royles writes. A holistic view of this work necessitates an understanding of African American activism and the cultural forces that shape it, such as, to name a few discussed in To Make the Wounded Whole: the Black church, discrimination in health care, and economic precarity. Royles continues “[this inclusion] forces us to recognize that grassroots responses to AIDS not only grew out of queer liberation and gay health activism but also fit into a much longer trajectory of the Black health movement.”

The depth of Royles’s research is clear. To Make the Wounded Whole relies heavily on interviews he conducted over the past decade in addition to drawing from a wealth of archival collections, including materials the Sophia Smith Collection at Smith College, ONE National Gay and Lesbian Archives, and the ACT UP Oral History Project. The book’s publication coincides with the launch of Royles’s archive project: the African American AIDS Activism Oral History Project, which lives largely online. The oral histories provided on this site offer resources to future scholars, students, and thinkers who wish to study the epidemic.

While To Make the Wounded Whole no doubt benefits from the lived memory of many of the people whose stories it recounts, the participation of these individuals in the creation of this book reminds us that this history is not far removed from our own, and that the problems addressed in the book — not just HIV/AIDS, but racism, poverty, the dominancy of multinational capitalism, sexism, and government indifference, too — remain with us. The conclusion meditates on the cruelty of the current US administration toward people with AIDS, as well as the effects that global climate catastrophe will have on exacerbating the HIV/AIDS crisis worldwide. Further, income inequality in the United States has and will continue to rise, and, as Royles notes in his chapter on SisterLove and HIV/AIDS in the Deep South, new diagnoses have reached epidemic proportions in states like Georgia. At Grady Hospital in Atlanta, patients are increasingly diagnosed with HIV and AIDS at the same time, and they are disproportionately Black. “Atlanta doesn’t need SisterLove,” he argues, “it needs a hundred SisterLoves.”

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Charles O’Malley is a guest researcher at the Amsterdam School for Cultural Analysis at the University of Amsterdam and a doctoral candidate at Yale University.