“[T]he initial laws were structured to mainly service [New York and California].” While HIV funding, in some cases, gets distributed according to the number of AIDS cases in a given area, “they counted every AIDS case from the beginning of the epidemic, including all the deceased folks. Now that is just an artificial way to keep the money in the areas where the epidemic historically began.” She saw the contrast starkly around 2010: “In those days, this was right after the meds came out and people were starting to get better, we have a thousand people on a waiting list for antiretrovirals here in Alabama. With the same funds in New York and San Francisco and other places, they were able to spend on […] things like vitamins and water filtration systems and acupuncture and all kinds of good stuff. But we couldn’t even get medications.”

A Wave That Hit “Late”

Many of the Interviewees in this collection were directly affected by the epidemic (either by being diagnosed, seeking justice for patients they knew personally, or witnessing its devastation) while living in deeply rural parts of the South. Among these interviewees, the idea that the disease hit the South “late” is a common refrain. While the early cases in Florida, Georgia, and Oklahoma tell a somewhat different story, the relative isolation of some of these interviewees’ communities, paired with the often cruelly deliberate lack of medical resources and attention, sometimes made HIV/AIDS feel like a terrible, unavoidable wave – one seen first from a great distance, but that many were unable to outrun.

For some, that wave galvanized them. When Jack Myers witnessed both his cousin’s tragic death of AIDS and the responding bigotry of his small town of Pelahatchie, Mississippi, he sprang into action. Using money from the local gay bars he owned, Jack raised funds to buy and found the Sandifer House in 1987¹², named after well-known Southern HIV/AIDS activist Eddy Sandifer¹³, to house young men living with AIDS who had been rejected by their families. Jack also recalls there being one doctor in the entire state of Mississippi who was both able and willing to treat gay patients living with HIV, a man named Bill Causey, who saved countless lives by “devot[ing] his whole, just about his whole practice for the gay community¹⁴” in the face of deliberate scarcity. While Jack was profoundly moved by Dr. Causey’s generosity and care, he is also acutely aware of the lives in his community that could have been saved if more doctors had acted similarly.

Two of the numerous bars Jack Myers owned in Jackson, Mississippi: Mae's Cabaret and Jack & Jill's. Jack raised money from the bars to start Sandifer House, which provided HIV housing.

In telling the story of the South and its response to the HIV/AIDS crisis, a common theme is the widespread and deliberate lack of care from the medical system. One interviewee, William Waybourn, sued his Dallas-area hospital in 1988¹⁵ when he found out that administrators at Parkland Memorial Hospital were letting patients with HIV and AIDS die on waiting lists¹⁶ for beds and medication rather than treating them. When William confronted the president of the hospital board, he was told that it was “so expensive that it would bankrupt not only the entire hospital, but the County, because they had already done an analysis of how much it was going to cost,” William recalls. “And the expense of treating patients was so great that they were just going to turn a blind eye to it.¹⁷”

He was shocked when the conservative judge in his lawsuit against Parkland sided with William and his group, the Dallas Gay Alliance (or DGA), to end hospital waiting lists and force the hospital to treat patients with HIV and AIDS.

When Southern hospitals weren’t withholding access to beds, they withheld access to information about something as basic as life expectancy. Even in larger Southern cities like Miami, New Orleans, and Atlanta, OUTWORDS interviewees remember being told by providers that they would die within six months of receiving their diagnoses, that there was nothing they could do, and not being given further information. One interviewee, Gina Brown, recounts her experience with diagnosis: “[The nurse] just [took] the papers and put them in front of her face and she [said]: ‘Well, Ms. Brown, you have AIDS, and you’re going to die.’ And I collapsed on the chair and I started crying.¹⁸” Gina, who was pregnant at the time, was despondent from the lack of both information and care from this person ostensibly sworn to do no harm.

When a different nurse later introduced her to an AZT drug study, Gina was so beaten-down that she couldn’t believe the other woman would even want to touch her to shake her hand, much less save her life. The second nurse’s education and drug trial ended up saving Gina’s life, and ensured that Gina’s daughter was born HIV-negative. This act of compassionate education empowered Gina to become an advocate herself for greater access to health care and decriminalization of HIV/AIDS with the Southern AIDS Coalition, working to make sure that nurses like the one who saved her life were the rule, and not the exception.

Access to resources wasn’t just restricted by healthcare providers, but by climate change and natural disasters. In 2005, when Hurricane Katrina decimated large parts of New Orleans, one of the homes destroyed was that of Mardi Gras krewe member and nonprofit founder Michael Hickerson, and he wasn’t able to live there for months even while he continued serving the community. People with HIV had to deal with the extra layer of no longer being able to access their medications and services, as Michael describes: “These were people who [were] used to getting [HIV] services at a certain place, who had already established how they were going to get services, where they would get them from, and who they would get them from. And it was all just set up. And to be displaced and moved to some place where you have no idea where you are and how to start – some of these people couldn’t read, and didn’t understand any of these things.¹⁹”

Overcoming Stigma

Beyond Katrina, Michael also saw how stigma prevents information about HIV/AIDS from getting to the African-American community, and how that leads to increased HIV rates – in 2023, the CDC reported that 7 out of the 10 states with the highest HIV diagnosis rates for Black people were in the South²⁰. “You could have all the forums you could possibly want to have, it’s getting them to come out because of the stigma,” he reflects. In response, Michael and his colleagues decided to meet the community where they were. First they stood on street corners where they knew African-American people would be walking by and passed out information and condoms. Then they decided to take a more celebratory approach:

“In the African-American community, we have a tradition called Second Line. Second Line is a celebration of life, and it’s done through song and dance in the streets. […] We decided that we would have a Second Line, but we would use it to raise awareness around HIV. So, we hired a brass band, one of the best brass bands in the city. […] We did this parade, we had a targeted area that we did it, because we knew that there was a high concentration of HIV in that area […] and we just hand[ed] out pamphlets and information on, ‘If you know somebody, or you need to be tested, call this number.’ Very gently. And it was a huge success. So we did it for about five years.”

A Call to Faith

OUTWORDS interviewees often found their power in their survivorship, with several called to leadership in faith movements closely tied to their activism. Reverend Robert Arrington was told, like Gina Brown, that he wouldn’t have long to live after his diagnosis with HIV. Outliving his prognosis was the catalyst he needed to follow his calling in ministry, fighting against both bigoted church leadership and his own worsening health for six years before getting ordained in Durham, North Carolina. In Atlanta, Reverend Duncan Teague committed even more strongly to both his ministry and his activism for greater HIV/AIDS research and prevention because of the homophobic response of his church community to a gay pastor. In the 1980s, he was one of the first out Black gay men doing HIV/AIDS outreach in Atlanta, and his status as a faith leader helped model greater acceptance for members of the community living with HIV/AIDS within his church.

Before knowledge of the HIV/AIDS epidemic was widespread, the divide between gay and lesbian activists’ priorities was stark. Patty Sheehan, the first openly gay elected official in central Florida, describes it this way: “You had the women kind of doing clinic defense and doing their thing. And kind of doing their female empowerment stuff and kind of being separate. And then the AIDS epidemic hit.²¹” When knowledge of the epidemic reached Southern communities, the effort to provide community care and justice became intersectional, with queer women joining the fight throughout the South.

In Alabama, Kathie Hiers had watched five of her closest friends, all gay men, get diagnosed with HIV, and seen the complete dearth of care available to them. This pushed her to found AIDS Alabama, which provides “housing, health care services, health insurance premium assistance, and support groups²²” for those living with HIV/AIDS, as well as prevention efforts. In 2001, Kathie was also integral to the founding of the Southern AIDS Coalition, working tirelessly to ensure that people living with HIV and AIDS in the South receive the same resources, treatment, and dignity as those living in major cities like New York.

The Latine community also played a key role in Southern HIV/AIDS advocacy: since what little education and outreach that existed was only being done in English, pioneering interviewees like Eddie Orozco and Elia Chinó stepped up to fill in the gaps. In Miami, Eddie, an activist since the aughts, observes that “there’s a commercial in English for HIV medication, but I don’t see that in the Latino community. The work has to be done so we can have those candid conversations.²³” His work, including his latest project, Voces, is built around teaching people in Spanish how to have hard conversations and reduce stigma.

Decades earlier, and across the Gulf of Mexico in Texas, Elia was catalyzed to begin her own advocacy in 1989, following the death of her best friend from AIDS complications. Elia began to distribute condoms and prevention literature from the local Houston health department throughout her community, and later created HIV prevention classes that served 500 young people, with the goal of reducing the spread and stigma of HIV/AIDS specifically in her Latine community. In 1999, she founded the organization that’s now known as Fundación Latino Americana de Accion Social (FLAS) to address her community’s needs.