Tengerben a csepp

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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.

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”.  

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:

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.

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.

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.

By 1996, all of the men facing the camera in the picture were dead.

Every.

Single.

One.

Eric Luse, the photographer, said this in a more recent article :

By 1996 the obituary list was almost 50 names longer than the entire choral roster. All of the positions plus four dozen more, gone. The obituary list continued to grow, too. The cost and availability of any treatments in the mid-late 90s continued to cause more death.

If you were queer in the 80s and 90s, you knew someone who had it and knew people who died from it. Period. I cannot stress the impact this had on the queer community and those of us who were alive at the time, and I know the scope of it is almost unimaginable to younger people today.

By 1996, there were NO surviving original members of the SFGMC. You need to know that when you see this picture.

Dozens of the men turned away from the camera here in this shot were also dead alongside the men in white. It is vital to recognize that.

There is no hope in this picture, it isn’t a display of a lucky few who avoided death. There is no “Well at least some of them survived” because no, they didn’t, and this time was so fucking bleak and painful it’s astonishing that anything got done. They’d march one week and die the next. Their friends would bury them in the morning and march in the afternoon. This went on for years.

Bigotry and hate and ignorance killed generations of queer people. It speaks to the sheer resilience of the community that from that all but state-sanctioned genocide, we have gained so much ground in the last few decades. Much is owed to the people who refused to stay quiet and who fought even on their deathbeds, so please consider learning about LGBTQ+ history as a way of continuing the fight and showing respect. Many of us coming of age at that time didn’t have that opportunity, and made it a point to learn and get involved as teenagers and young adults because we saw what we were losing.

When talking about LGBTQ+ history, often we have to be really careful with the language we use, because how we understand things now is not how the people we’re talking about understood themselves at the time. We end up using phrases like, “People who we would now understand as gay or lesbian” or “experiences which modern transgender people often identify with”.

In this case? It’s because that’s the word they used.

(Many of them also used the words “fag” or “dyke”, but “queer” is more inclusive.)

When I talk about “the leading lights of queerness” I mean Queer Nation. I mean the people who contributed to Queer Theory. I mean people who deliberately chose to use that word. I mean me and my ex-girlfriend. We exist.

During the AIDS crisis especially, homophobia was so bad that a lot of people didn’t want to be known by any word associated with the gay community: Not gay, not homosexual, not queer, not anything. Epidemiologists had to create the category of “men who have sex with men” because there was literally no existing term that didn’t carry the weight of a slur. The purpose of using the word “queer” was for people to say, “Let’s stop running from the things society is calling us; let’s pick up the weapons they’ve hurled at us and start hurling them back. There is no level of socially acceptable we can be that will make them suddenly decide our lives matter. We’re here, we’re queer, get used to it.”  It meant very specifically embracing and defending their/our marginalized position.

Every word we’ve ever been known by has been a slur. We all have our own histories and flinch reactions. I grew up with “gay” and “lezzo” being used really hatefully around me, as well as “queer” and “dyke” and “fag”, and I have different comfort levels with all those different words.

Franz Kafka, Letters to Milena //

 was admitted to Julliard at 8.  

was performing in top venues by 16.  

pioneered “swinging the classics” and made the equivalent of a million dollars a year doing it.  

was the first person of color to have their own national TV show.  

went to Hollywood but refused to be cast as a “singing maid.”  Demanded and got control over her casting, her wardrobe, and how footage featuring her was cut.  

refused to perform in segregated venues and led charges for integration in several northern cities, notably Spokane.