This International Women’s Day, we take a look at the queer women at the frontline of the AIDS epidemic
BY AMY CHISWELL, IMAGE BY GETTY IMAGES
“The lesbians were really in charge… as it turns out they had a lot more [activism] experience than a lot of the gay guys. They had been fighting for the equal rights amendment in the 70s and they brought all those skills and experience…so we could hit the ground running… I thought the lesbians had the biggest balls in the room at that point!…it was always kind of amazing to me and still to this day it gives me goosebumps… they didn’t have to show up…and that’s what was so beautiful”
– Peter Staley, key activist for ACT UP, describing early ACT UP meetings (interviewed on the podcast ‘A Bit Fruity with Matt Bernstein’)
From the beginning of the AIDS epidemic, the world has seen white, cis gay men as the face of this disease. HIV/AIDS can affect anyone of any demographic, but this image led to so many non-white and non-cis people being further marginalised in an already desperate situation. In America, it would take until 1986 for President Reagan to even say the word “AIDS”, and the UK was equally negligent on the issue. Many politicians in both the US and UK saw AIDS as a “gay issue” and didn’t want to be associated with it, or worse believed that those who engaged in “perverse acts” were getting what they deserved. The willful ignoring of this epidemic was staggering and it would take nearly two decades to see widespread meaningful improvement in research, treatment and government policy.
ACT UP (AIDS Coalition to Unleash Power), perhaps the most well-known and well-organised of the AIDS activist groups, was formed in 1987 in New York, before spreading to other cities in the US and Europe like London and Paris. One of the most effective methods of protest was called a “mass die-in”, where activists would lie on the ground as if they were dead and hold up crosses and makeshift headstones. ACT UP was defined by creative and high-impact demonstrations which were relentless and highly organised, the goal was to be impossible to ignore.
It can’t be overstated how much misinformation harmed people living with HIV at the time. In 1988, Cosmopolitan Magazine published an article which claimed that women with “healthy vaginas” shouldn’t worry about unprotected sex with HIV-positive men and implied that it was a gay man’s disease and nothing else. This was published despite the fact that the CDC had already registered over 2,000 cases of women with HIV/AIDS, 26% of whom had contracted it through unprotected vaginal sex.
In response to this, 300 women-identifying ACT UP activists distributed thousands of leaflets on the streets in the freezing New York winter. The idea that cis women cannot contract HIV was a misconception from the very start of the AIDS crisis, and it has needlessly claimed many lives since. Even today, many women don’t know they could be at risk for HIV and are far less likely to be tested for it at a sexual health clinic.
Sarah Schulman, who has written over 20 works on the history of ACT UP and AIDS activism, notes that although the pictures we see may all be of cis, white men, the reality is very different.
In her book Let The Record Show: A Political History of ACT UP, she notes how the women in ACT UP led a four-year campaign to get the CDC to add women and people who inject drugs to the definition of AIDS in 1993. She, like Peter Staley, an early AIDS activist, agrees that lesbians were key in making ACT UP as organised as it was. It was also women who led early AIDS support groups pre-ACT UP, and really built a united community which helped to reduce activist burnout and keep the movement going as long as it did.
Forgotten figures of the AIDS crisis include Sharon M. Day, who set up the Indigenous Peoples Task Force (IPTF). The original task force was set up by a group of mostly lesbians with a few gay men, and to this day provides prevention, harm reduction, counselling and testing, case management and housing for Native American people living with HIV and their families.
Another figure that has made a particular impression on me is Connie Norman, a trans sex worker who overcame addiction and abuse to become a self-proclaimed “AIDS Diva”. The subject of the documentary AIDS Diva: The Legend of Connie Norman, she was a key figure in the LA activist scene, and stunned people with her unfiltered rage at demonstrations and her deeply caring nature behind the scenes. Torie Osborne, her friend and fellow activist said: “I think it’s a gift of the LGBT community to be both tough and soft if we allow ourselves to access those parts. And Connie did, absolutely.”
It’s important to remember that just because you don’t see women, people of colour or trans people at the forefront of history, this does not mean they weren’t there. It’s important to look for the hidden contributions of marginalised people in political movements who often end up doing the hardest groundwork with the least recognition.
There has never been a more important time to look back and learn from ACT UP, and the women who fiercely advocated for their community. We are in a generation now that is suffering through a similar era of anti-LGBTQIA backlash and hatred, particularly aimed at the trans community.
But this International Women’s Day, I’m choosing to reflect on the work of women during the AIDS crisis and reflect on how our community is always stronger together. Sometimes we can feel really powerless and hopeless, and that’s understandable, but in those moments I remind myself of another quote from Peter Staley: “Activism, if done really well, is about ploughing through pessimism.”
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