The first World AIDS Day took place on Dec. 1, 1988, less than a decade after the first known cases of the virus were reported in young, gay men in the U.S., and was the first international day dedicated to a global health crisis. The day was conceived by two men at the World Health Organization as a way for all the people of the world to unite in their fight against HIV/AIDS, to show support for those living with the virus and to remember those who were lost to AIDS-related illness.
In that first year and every year since, World AIDS Day takes on an annual theme. For World AIDS Day 2022 the theme is Equalize, a call to action to address the inequalities which are holding back progress in ending AIDS. In 1990, during the third annual World AIDS Day, the theme was Women and AIDS.
Most of the attention of those early years of the AIDS crisis was put on gay men, focusing on who was getting diagnosed and who was fighting for answers, but women — especially queer women — were some of the earliest activists and are unsung heroes in the fight.
Patty Sheehan is the Orlando City Commissioner for District 4 and came out as lesbian in 1981. At the time, Sheehan says the community was fractured.
“The men were not very nice to the women,” she says. “[In Orlando] we would all go to the same bars, except you did have [lesbian bar] Odds & Ends, before it became Faces. Then you had the Parliament House, that catered to everybody, but it was pretty male. You had other bars like Silver Hammer and some other bars that were mainly for men. But you didn’t really have a cohesive community, not until AIDS struck.”
What wouldn’t be called AIDS — Acquired Immunodeficiency Syndrome — until 1982, was at the time called Gay Related Immune Deficiency, or GRID, because it primarily affected gay men at first.
“It was very scary in the beginning because no one knew how it was transmitted,” Sheehan says. “Nobody knew it was transmitted sexually at that point in time. Everyone was worried about getting it.”
Sheehan remembers that in the early days of the crisis in Orlando, it was the drag queens who first started to show signs of the virus.
“The drag queens got sick first, and because they were doing performance work and doing shows, when they got sick they couldn’t perform and make money, and a lot of them were off the books so they didn’t qualify for social security and disability,” she says. “So a lot of lesbians were taking in the drag queens and performers, and it was tough because a lot of them really couldn’t afford to take people in but they did it because they had nowhere else to go.”
Two of the first lesbians to open their homes to the performers in Orlando were Donna Coleman and Cherie Goyette, both members of the lesbian group Loving Committed Network.
“LCN was a lesbian potluck group and women’s only space, and Donna and Cherie were two of the leaders of LCN,” Sheehan says. “Donna took in Doug Burke, who was the local drag queen Monica Burke, and Cherie took in several folks. They were just trying to get people through to the end without living on the streets and give them some dignity in their final days. Cherie was the most vocal at that time.”
Many people who contracted AIDS would develop lesions caused by Kaposi’s sarcoma, a type of skin cancer, and would experience extreme weight loss. Sheehan says that most didn’t last more than six months before they died.
“I had friends who literally looked like walking skeletons,” Sheehan adds. “And I was scared because all my friends were dying. It was awful. There was a time there where I lost six friends in one week. It was horrific. It got to the point where I couldn’t go to anymore funerals.”
The fear and anxiety quickly turned into anger as little was being done outside of the LGBTQ community to get information out about AIDS.
“We didn’t have the internet so the ways we communicated, in the lesbian community it was newsletters, and in the larger gay communities there was The Weekly News,” Sheehan says. “That’s how everyone got their information — flyers, The Weekly News and the LCN Express.”
The same fight could be found in the queer and ally women of Tampa Bay. Watermark spoke with Dr. Joyce Stone and Becky Williams, a lesbian couple in St. Petersburg, in 2017. Stone was a deacon at King of Peace MCC Church and Williams was on the board of directors, and both of them along with other members of their church formed AM Ministries, an AIDS outreach service that was the first of its kind in St. Petersburg.
The organization would assign a “buddy” to each patient who would become familiar with their case, their family, their support systems and guide that person in finding whatever help was available. Williams was the only female buddy in the group.
“[Y]ou have to understand how divided the men and the women were back then,” Williams said to Watermark in 2017. “There were many gay men who didn’t feel comfortable discussing some of the very private details of their lives, including their sex lives, with a woman.”
An unlikely advocate in the fight against AIDS in the Tampa Bay area was Sister Anne Dougherty, a Franciscan nun who founded Tampa’s Francis House, a support center for people with HIV and AIDS, in 1989. Francis House merged with AIDS Service Association of Pinellas in 2016 to form EPIC, or Empath Partners in Care.
“[Sister Anne] was working in the hospitals with HIV patients because nobody else would,” says Joy Winheim, executive director of EPIC. “Even nurses didn’t want to at first. The patients were on a separate floor, and everyone would be dressed all in PPE, with masks and shields and body suits because everybody thought just by walking in the room they were gonna get it.”
Dougherty talked about her first experience with a person with AIDS in an interview with the Tampa Bay Times in 1999.
“His name was Don, and his partner and I were there with him when he died,” she said at the time. “For me there was this sensation that God was present in the room and that Don was safe, that he really was with God. That was my first experience of knowing a gay couple. I was like, what is this love all about?”
A month later, Dougherty said she started to volunteer with the Tampa AIDS Network.
“She was providing spiritual counseling and [some of the patients] expressed to her that they had nowhere to go when they got out of the hospital so they might as well die here,” Winheim says. “‘My family doesn’t talk to me, my friends don’t talk to me and I don’t believe in God anymore.’ She said ‘we have got to do something about this.’”
Dougherty took an old auto mechanic garage in Tampa that was donated to her and turned it into Francis House.
“She made it all happen. Something in her heart led her to do this and it has provided great refuge to a lot of people,” Winheim says.
Vicky Oliver, director of supportive services and program implementation at EPIC, came to Florida from New York in the 1990s to study social work at the University of Southern Florida. She started interning with Tampa AIDS Network and has been in the field ever since.
“When I started, I remember just being in awe of the nurses and doctors, many of who were women, working on the HIV floors at the hospitals — St. Joes, Tampa General and Memorial Hospital — they were amazing. They were all unsung heroes of the time,” she says. “The things that they did for the patients, and the things they would let us do for the patients, bring in things we weren’t supposed like cats, dogs, birds.”
During the holidays, Oliver says you would forgo spending time with your own family to provide holidays for the patients.
“So many times their families would want nothing to do with them,” she says. “We would go get the gifts and wrap them, we would sit with them and we would have meals together. We did the things that needed to be done to help them feel loved and supported.”
“Francis House was specifically created for those people who lost their family, their friends and their faith,” adds Winheim. “Being able to sit with someone when they died. It was the best worst experience ever. To be able to say ‘you don’t want to die alone, I’m gonna make sure that doesn’t happen. I’m gonna sit with you until you go.’”
Kathryn Norsworthy is a professor of clinical mental health counseling at Rollins College in Winter Park and a licensed psychologist. She came to the area in the early ‘90s to work with Centaur, Central Florida’s oldest AIDS Services Organization.
“Before coming to Central Florida, I led support groups for gay men who had AIDS and HIV,” Norsworthy says. “These groups were complex because they were filled with joy and celebrating living in the present but they were also filled with grief and anger and rage for the fact that so little was being done to stop the crisis. They were also full of hope that things would change.”
Norsworthy recalls sitting with members of her group in hospital rooms, taking turns with other men to make sure the person in the bed knew he was not alone.
“We would cry together, we would tell stories, share memories, try to buoy each other and hold the hand of the person who was dying,” she says. “We did everything we could to be as connected as possible and make sure they felt our presence.”
When Norsworthy came to Centaur, the focus of her group went from the men who were living with HIV and AIDS to leading a support group for the staff. That’s when Norsworthy met Debbie Tucci.
“Debbie was the director of Centaur at the time,” Norsworthy says. “She was a fierce ally for the community during the height of the AIDS epidemic.”
Queer women were also rallying in the streets during the AIDS crisis, fighting as a part of grassroots groups like ACT UP, or AIDS Coalition to Unleash Power, for medical research, treatment and advocacy, and working to change legislation and public policies.
“We had people who had health insurance through their jobs and were being told their health insurance wouldn’t cover AIDS,” Sheehan says. “That’s when we had to fight and make sure there weren’t any discriminatory practices and make sure people weren’t getting fired from their jobs for having HIV.”
The fight culminated with a march on Washington, D.C. in 1987.
“Donna was the head of the LCN then and organized for everyone up to D.C.,” Sheehan says. “These guys knew they were going to die and yet they still insisted on going and advocating for those who they knew were going to come after them. They were heroic. They went to the march on Washington in wheelchairs, and they had posterboards with the names of their friends who had died tied to the back of them.”
The National March on Washington was Oct. 8-13, 1987 and more than half a million people attended. It was also the first display of the NAMES Project AIDS Memorial Quilt, a project conceived by San Francisco LGBTQ and AIDS activist Cleve Jones. Each panel of the quilt project was created in memory of someone who died of AIDS. The quilt that was displayed in D.C. on Oct. 11, 1987, consisted of 1,920 names and covered a space larger than a football field.
“I’ll never forget Whoopi Goldberg being the first person to walk out and say, ‘When is this shit gonna stop?’ She was amazing, and when they unveiled the quilt and it just kept going and going,” Sheehan recalls. “And each panel is [6 ft. x 3 ft.] roughly the size of a coffin. It brought it to a human level. It individualized everyone, they weren’t just a statistic, and that really helped us get the changes we needed. We were very creative because no one liked gay people then. You could lose your job for being gay, hell I got demoted at my job for going to the march, it was risky.”
On the last day of the event, a mass civil disobedience action at the Supreme Court occurred, resulting in the arrest of some 800 people.
“The LCN was there when they threw the blood on the steps of the Supreme Court, which was fabulous theatre by the way,” Sheehan remembers. “I wanted to get arrested but the boys wouldn’t let me. They told me ‘No, we have better things planned for you.’ Looking back now, it’s probably best that I didn’t get arrested that day.”
The community coming together and standing united made the world stand up and notice, but more importantly it made the lawmakers and medical community notice. The Food and Drug Administration approved AZT, the first anti-HIV drug, in 1987. More drugs were developed in the 1990s and into the 2000s, and the numbers of those dying began to decline. Through it all, the LGBTQ community remained united.
“The community came together because they had to,” Winheim says, “and if you look at the history of employees at Francis House or Tampa AIDS network or TBAN, it’s all women. You have men scattered in there but the case managers and the nurses, it is all women.”
“For the most part, everyone came and stayed together,” Sheehan says. “Gay Community Services became Gay and Lesbian Community Service, which is now just The Center [Orlando]. You did see that change and I think it was a good change. It’s a shame that it took something so horrific to bring everyone together but sometimes you don’t know you need someone until you do. The men thought they didn’t need the women for anything and then it was the women that took them in and took care of them.
“I watched friends die horrifically, and it’s something I won’t ever be able to get out of my head,” Sheehan continues. “I’m so glad I was able to hold that space with them, hold several of my friend’s hands as they transitioned, but it was some of the hardest things I’ve ever done. So today it frustrates me when I see the number [of HIV cases in Florida] going up. Your health is important, don’t be fatalist like you’re gonna get it anyways. Still protect yourself, go on PrEP if you need to. I don’t care how you do it, just take your health seriously.”
