My girlfriend and I talk a lot about our different generations of queerness, because she was doing queer activism in the 1990s and I wasn’t.
And she’s supportive of my writing about queerness but also kind of bitter about how quickly her entire generation’s history has disappeared into a bland “AIDS was bad, gay marriage solved homophobia” narrative, and now we’re having to play catch-up to educate young LGBTQ+ people about queer history and queer theory. It gets pretty raw sometimes.
I mean, a large part of the reason TERFs have been good at educating the young and queer people haven’t is, in the 80s and 90s the leading lights of TERFdom got tenured university positions, and the leading lights of queerdom died of AIDS.
“Excuse us,” she said bitterly the other day, not at me but to me, “for not laying the groundwork for children we never thought we’d have in a future none of us thought we’d be alive for.”
“the reason TERFs have been good at educating the young and queer people haven’t is, in the 80s and 90s the leading lights of TERFdom got tenured university positions, and the leading lights of queerdom died of AIDS.”
thank you for giving me a good reason to finish my dissertation and try to make it in the academy
Wait, idk LGBTQ+ history, but they died of AIDS cause, what, hospitals refused to treat them or…?
Oh heck yeah.
When an epidemic happens, public health agencies spend millions of dollars trying to understand what happens: Why are people sick or dying? What caused it? Who else is at risk? Government health departments like the Centres for Disease control and private companies both invest hundreds of millions of dollars into preserving public health. This happened in 1977, when military veterans who all attended the same gathering began to get sick with a strange type of pneumonia, with 182 cases and 29 dead, and the CDC traced the illness to a bacterium distributed by the air conditioning system of a hotel they all stayed at, and in 1982, when seven people died of tainted Tylenol, and pharmaceutical companies changed the entire way their products were made and packaged to prevent more deaths.
Meanwhile, the AIDS epidemic took six years to be recognized by the CDC (1975-1981) because at first the only people dying were intravenous drug users, which is to say, heroin addicts; when it was recognized, President Reagan’s government pressured the CDC to spend as little time and money on AIDS as possible, because they literally didn’t think gay lives were important. So yes, hospitals refused to treat them and medical staff treated them as disgusting people who deserved to die, but also, there was very little funding for scientists to understand what this disease was, what caused it, where it came from, how it spread, or how to stop it. The LGBTQ+ community had to organize and fight to get hospitals to treat them, to fund scientific research, to be legally allowed to buy the drugs that kept them alive, and to have access to treatment. An effective treatment for AIDS wasn’t found until 1995.
And it’s ongoing; a lot of the difficulty of fighting AIDS in Africa is that it’s seen as “the gay disease” (and thanks to European colonialism, even African societies that used to be okay with us were taught to think LGBTQ+ people are bad). Even now that we have medications that can treat or prevent AIDS, they’re incredibly expensive and hard to get; in 2015, New York businessman Martin Shkreli acquired the exclusive right to make a drug that treats an AIDS-related disease, and raised its price from $13.50 a pill to $750 a pill.
Here’s one history on what it was like to have and fight AIDS, one history on how politicians responded to the epidemic, and if you can get a copy of the documentary How to Survive a Plague, it’s a good introduction, because it’s about how AIDS patients had to fight for their lives. A lot of these histories are imperfect and incomplete, because privilege played a big part in whose lives and deaths were seen as important–Poor people, people of colour, trans people, and drug addicts were less likely to be able to afford or access medical care, and more likely to die without being remembered; histories often tend to focus on straight people who got AIDS through no fault of their own, and then white cis gay men who seem more “respectable” and “relatable”.
I mean, people who will talk about how homophobia led to neglect of AIDS still find ways not to mention that AIDS isn’t just sexually transmitted; it’s hugely a disease of drug addicts, because sharing needles is a huge way the disease spreads. But because society always thinks, oh, drug addicts are bad and disgusting people and of course criminals, that often gets neatly dropped from the histories, and it’s still hard to get people to agree to things that keep drug addicts alive, like needle exchanges and supervised injection sites. But if you want my rant about how the war on drugs is bullshit used to control poor people and people of colour, and drugs shouldn’t be criminalized, you’ll have to ask for that separately.
They died of AIDS because
Hospitals refused to treat them, and when they did get admitted, treated them like dirt so their will-to-live was eroded - refused to let long-term partners visit them, staff acted like they were disgusting nuisances, etc.
Very little funding was put into finding causes or cures - AIDS was considered “god’s punishment” for immoral behavior by a whole lot of people.
Once causes were understood (effective treatments were a long ways off), information about those causes weren’t widely shared - because it was a “sex disease” (it wasn’t) and because a huge number of the victims were gay or needle-drug users, and the people in charge of disease prevention (or in charge of funding) didn’t care if all of those people just died.
Not until it started hitting straight people and superstar celebrities (e.g. Rock Hudson) did it get treated as A Real Problem - and by that time, it had reached terrifying epidemic conditions.
Picture from 1993:
We lost basically a whole generation of the queer community.
As a current AIDS survivor, this is really important information. I was diagnosed not only HIV positive in 2014, but I had already progressed to an AIDS diagnosis. Knowing how far we’ve come with treatment and what the trials and tribulations of those who came before cannot and must not ever be forgotten. Awareness is the number one goal. I often speak to the microbiology students at my university to explain what it’s like to live with, how the medications work, side effects, how it’s affected my daily life, and just raise general awareness.
Before my diagnosis, I, like many others, was clueless to how far treatment has come. I was still under the belief my diagnosis was a death sentence. Moving forward, even if only one person hears my story, that’s one more person that’s educated and can raise awareness.
I believe it’s time for us as a society to start better education of this disease. The vast majority of the people I’ve spoken to are receptive to the knowledge of my status, and I’ve received lots of support from loved ones, friends, and total strangers. It’s time to beat the stigma.
This is slightly off-point, but as for the cost, I wanted to mention that some pharmacies have specialties that let them get special coupons/programs and stuff to save money.
A bottle of Truvada (a month supply commonly used for treating this) is at least $3,000 out of pocket and insurance doesn’t usually take a lot off of that. But the pharmacy I work at is an HIV specialty and we always get te price down to less than $10.
If you’re on HIV meds and they’re ludicrously expensive, ask your local pharmacy manager if there are any local HIV specialty pharmacies that they know of. They might be able to help.
I think it’s important to emphasize that, while the diagnosis is no longer a death sentence, it is also true that people dying of AIDS because of homophobia is not history only.
My brother’s first boyfriend was kicked out/disowned by his parents for being queer, got AIDS, couldn’t afford treatment, and died. He died in 2019, at around 20 years old.
In 2019.
Barely more than a kid.
Of a treatable disease.
Because of homophobia.
Because his parents cared more about not being associated with a queer person than they cared about their son’s literal life.
AIDS is not just history. Neither is homophobia.
