Why Black AIDS History Matters

Jessie Jackson speaking at AIDS rally, New York City, New York (Joseph Sohm/ Shutterstock)

As we enter the third year of the Covid-19 pandemic, it might be easy to forget that in early 2020 we were already living through another pandemic—the one caused by the human immunodeficiency virus (HIV) and its advanced stage of infection, called acquired immunodeficiency syndrome (AIDS), which was publicly recognized by doctors in the United States over forty years ago, in 1981. And while Covid-19 has disproportionately impacted Black communities, racial disparities in the US HIV/AIDS epidemic are even more stark. African Americans account for around 12 percent of the US population, but they make up 40 percent of the 1.2 million people who are living with HIV in America today.

This is nothing new. From the beginning of the HIV/AIDS pandemic, African Americans have been overrepresented among people testing positive. That’s why today, National Black HIV/AIDS Awareness Day, is important. But even as we recognize that AIDS has devastated, and continues to devastate Black America, our stories about the disease remain overwhelmingly white.

Over the last fifteen years or so, we’ve seen lots of new attention to the history of AIDS and AIDS activism. The story of AIDS in the US is most often told through the viewpoint of white gay men, in plays and made-for-TV movies like The Normal Heart, or the documentary How to Survive a Plague. Recent AIDS activist memoirs, including entries by Avram Finkelstein and Peter Staley, as well as Sarah Schulman’s oral history collection, Let the Record Show, chronicle personal histories of the New York chapter of the AIDS Coalition to Unleash Power (ACT UP/New York), a group made up mostly of white, gay men.

These stories deserve to be told, but as long as they dominate our shared understanding of AIDS and AIDS activist history, we are left with a blinkered view of the past. What would it mean to, instead, put Black America at the center of the story? How would that change how we think about the past, present, and future of the epidemic?

First, a focus on Black communities changes our timeline of AIDS in America. It starts for us not in 1981, when doctors began to see clusters of mysterious infections in (mostly white) gay men, but in 1969 with Robert Rayford, the first documented person with AIDS in the United States.

Rayford was just fifteen years old in 1968, when he checked in to City Hospital in St. Louis, Missouri, with a weakened immune system and a case of chlamydia that had spread throughout his body. He told doctors that his symptoms started not long after a sexual encounter with a girl in his neighborhood, but revealed little else. After his death in May 1969, an autopsy found lesions on his skin and soft tissues from Kaposi’s sarcoma, an opportunistic cancer that subsequently became associated with AIDS.

Over a decade later, doctors tested Rayford’s blood and tissue samples and found evidence of HIV. How he contracted the virus remains a mystery, but his story tells us that the virus was present in his community over a decade before AIDS would be seen elsewhere. So why was AIDS recognized as a new disease in New York and California in 1981, rather than in St. Louis in 1969?

Rayford was from North St. Louis, a mostly Black neighborhood that, like many other such neighborhoods, had became a target of “urban renewal.” As James Baldwin quipped, urban renewal programs meant “negro removal,” with Black homes bulldozed to make way for freeways, parking lots, and commercial development in cities that had been hollowed out by white flight.

It might be a historical accident that we know about Rayford’s case at all. Others in his community may have been sick but avoided treatment, or perhaps were “removed“ elsewhere, preventing doctors from recognizing a cluster of similar illnesses. Either way, if there were others, they made up what Dagmawi Woubshet calls the “disprized dead,” those whose lives are not seen as worth saving, and whose loss is not seen as worth mourning.

In addition to revising our timeline of AIDS history, Rayford’s story focuses our attention on the systemic and structural factors that drive the epidemic. Like so many other aspects of health and disease, our vulnerability to HIV is embedded in the weight of our history, our built environment, and policies enacted by people in power.

AIDS arrived in Black communities on the heels of urban renewal projects like the one that tore through Rayford’s neighborhood, a rapidly expanding system of mass incarceration, and the deliberate unraveling of the social safety net. These developments in turn followed segregation, redlining, medical racism, and centuries of enslavement. In other words, AIDS represents what Saidiya Hartman calls the “afterlife of slavery,” and is shaped by all of its attendant inequities.

Public health scholars often describe these as “social determinants of health.” Celeste Watkins-Hayes, a sociologist who has written about women living with HIV, refers to them instead as “injuries of inequality” to more viscerally capture the ways that past and present injustices make it harder for some of us to protect ourselves from harm. In the context of AIDS, for example, a racist War on Drugs crippled needle exchange programs that could have saved lives. Also, hunger, homelessness, and the threat of physical violence made it hard for Black trans women engaged in sex work to demand that their clients use condoms.

Since the early 1980s, African American AIDS activists have focused on ways that injuries of inequality like these exacerbate the burden of HIV on Black communities. In the 1980s BEBASHI (Blacks Educating Blacks About Sexual Health Issues) produced educational short films that addressed Black women’s HIV risk in the context of domestic abuse. SisterLove, a group in Atlanta that takes an intersectional approach to HIV prevention among Black women, has operated a housing facility for HIV-positive women since the 1990s. And groups like ACT UP Philadelphia and Women with a Vision have organized around connections between HIV and mass incarceration.

These stories in turn highlight how the history of AIDS in Black America helps us to see the past, present, and future of the epidemic through an intersectional lens. This becomes especially clear when we examine AIDS activism by Black gay men.

Many of the first AIDS organizations in the US emerged in large cities with identifiable gay neighborhoods, which were marked as white spaces where Black gay men frequently experienced harassment and rejection. Because these organizations grew out of gay communities that alienated Black gay men, they had a hard time reaching those men with information and services. Racism in visible gay communities thus contributed to the idea that AIDS was a “white boy’s disease,” which would be hard to undo. It would be harder still to convince some of those organizations that specific outreach to Black gay men was needed.

Meanwhile, Black gay men had to contend with homophobia in Black communities as well. Some of the groups that rallied for AIDS prevention in Black communities were squeamish about working with gay men, and Black churches were often hostile to openly gay and lesbian members. Many Afrocentric thinkers, who were enjoying new popularity in the 1980s, also argued that Blackness and gayness were incompatible.

In this context, groups like Gay Men of African Descent (GMAD) in New York were formed to give Black gay men a place to meet and talk. They saw Blackness and gayness as equally important parts of a holistic identity and understood their work as part of the fight against AIDS. They figured that Black gay men, facing both racism and homophobia, needed to see themselves as worthy and whole before they would take steps to protect themselves from HIV.

To give members a sense of positive Black gay identity, GMAD looked to Black history. They designed workshops that highlighted the role of queer people in ancient Egypt and Yoruba culture, as well as in the Harlem Renaissance and the Civil Rights Movement. By highlighting their presence in the Black past, GMAD claimed space for Black gay men in the present. In doing so, they aimed to give Black gay men psychological tools to protect themselves and one another from HIV.

That work notably went beyond a model of HIV prevention rooted in changing individual behaviors. Groups like GMAD wanted Black gay men to make choices about sex that would protect them from HIV, but they also put those individual choices in the context of a collective identity that resisted both racism and homophobia. They didn’t take it for granted that Black gay men already saw their own lives as worth saving. Instead, they recognized that Black gay men confronted HIV alongside psychological and social pressures that made them especially vulnerable to infection.

A fuller accounting of the history of AIDS and AIDS activism in Black America helps us to see the story of the disease in the much longer trajectories of anti-Blackness and white supremacy in the US. As we continue to grapple with Covid-19, that history offers us the ways that African American AIDS activists have confronted an epidemic that thrives at the intersection of multiple oppressions. Their example helps us to see that approaches to public health that rely solely on what we do as individuals will only take us so far. If we think about AIDS, as well as Covid-19 and the epidemics yet to come, as symptoms of the disease of inequality, then it becomes clear that our remedies need to go much deeper.

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Dan Royles

Dan Royles is an assistant professor of history at Florida International University in Miami. His first book, To Make the Wounded Whole: African American Responses to HIV/AIDS (University of North Carolina Press, 2020), examined the diverse ways that black communities have responded to the HIV/AIDS epidemic over the last thirty-five years, and was a finalist for the Museum of African American History's Stone Book Award. Follow him on Twitter @danroyles.