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Gay men who were adults in the early 80s: what did you think was going on when a disease (later identified as HIV) ravaged the community?(r/AskReddit)
Speaking as a gay man too young to have experienced AIDS directly but who has studied the epidemic in more than one class: at first, there was little to no idea what was causing it. It primarily attacked gay men (in the US. This is important.) so it was considered “the gay disease”. Newspapers didn’t really run stories about it, and if they did, it was buried or vague or incorrect. The NY Times’ first article is pretty famous. Rare Cancer Seen in 41 Homosexuals, especially as it describes Kaposi’s sarcoma, one of the rare infections that would later be seen as an indication of AIDS. Without mainstream coverage, the largest way that gays learned about it was through gay newspapers, like the New York Native. One of the most famous articles, written by Larry Kramer, illustrates just how little attention was paid to it within the gay community: 1,112 and Counting. Doctors encountering it were perplexed at the healthy young men coming in with rare diseases like Kaposi’s or pneumocystis and it wasn’t for a long time that they connected them together under one condition of the immune system, as everything they were being hit with could only infect someone with a weakened immunity. The government was unresponsive and a number of gay men got together to form collectives.
The Gay Men’s Health Crisis was one of the first and it fielded political work while acting as legal advice for gays with it, as well as caregivers. The legal advice was really important: it was so misunderstood (thanks, in part, to the Reagan administration) that few people had a concrete idea of what it was other than something affecting gays. There was no idea of how it transmitted, so the fears were that it was airborne or you got it through touch. Gay men would be evicted from their homes or fired out of fear. Insurance companies would drop you. The fear was so prevalent that some people would refuse to touch bodies of people who died by AIDS. There was a scene from “The Normal Heart” (see below) where a guy describes that when a gay guy died, the morgue refused to touch his body. The hospital ended up wrapping him in a body bag and duct tape and leaving him outside for his mother and his partner to pick up. They had to drive around, with his body in the back, to find a crematoria willing to cremate the body and that was only after they paid a considerable amount of money.
The entire medical establishment was so focused on the gay community that the disease’s initial name was GRID, or Gay Related Immune Deficiency. The overwhelming majority of patients in the US were gay, so doctors would sometimes refuse to believe that a woman who was presenting the symptoms had the condition. “She’s not a gay male, so she must have something else.” They also refused to believe that children could get it for a number of years too. Even as they became more aware of the disease in Africa and Haiti (where women are the predominant patients), they believed it was something else. Hemophiliacs were another big group of people affected – there was no test for it and you could go for years before presenting symptoms, so it was in the blood supply. The larger blood organizations refused to institute screening once the test was available for a number of years, and hemophiliacs require an almost daily transfusion of blood. Nearly every hemophiliac in the eighties and nineties had it, and the government finally directed money towards it in 1990 after a young hemophiliac activist died of it, six years after the first cases. IV drug users were also a really big population with it, but they went unnoticed because a drug user is much less likely to go to a doctor for help, and when they get there and the doctor finds out they shoot up, the doctor was much more likely to write off their symptoms as “IV drug use related” and push them out the door.
To make matters worse, homosexuality was not even really misunderstood then…it was practically nonexistent when it came to honest medical knowledge. There was a record at one point of a medical discussion where some investigators threw out the idea that it was sexually transmitted because (I can’t find the exact quote because its all in my notes from last year) men didn’t have vaginas and they couldn’t fathom how else to give it to someone. It couldn’t have been through oral, or they would see more women with it. Doctors and researchers didn’t know enough about gay sex to know about anal. I’m not kidding. The public mostly ignored it – it was a gay problem affecting gays. This was all happening during the Reagan administration and the rise of the “Moral Majority” and the Christian Right in America, so the government ignored it and the public ignored it…until Rock Hudson, a famous outwardly heterosexual though rumored gay movie star admitted that he had it.
The GMHC had trouble getting information out there, as the government did everything it could to stop them. There was a famous speech where Jessie Helms, “Senator No”, held up a pamphlet from the GMHC that had some sexually explicit pictures on it, intended for gay audiences, and demonstrated how to use a condom (this was never intended to circulate outside of the gay community in NYC) and he called it pornography. He attached a rider to a bill that made it illegal to use Federal funding for any AIDS education or prevention materials that would “promote or encourage, directly or indirectly, homosexual sexual activities.” He pushed to have HIV added to the list of diseases with which you could be denied entry into the US and then campaigned to have it kept on the list a few years later. He opposed pretty much any bill that gave money to research. He also blocked funding for UNAIDS for a long period of time.
ACT UP was founded, partially from ex-members of the GMHC and were a lot more politically active. They protested outside of pharmaceutical companies and government buildings, demanding cheaper and easier access to medication and actually helped to push forth one of the biggest changes to FDA drug approval since that body’s foundation: a “faster” method for approving drugs. If a company can demonstrate that there’s a potential for good, then they can start getting the drug out, skipping a number of test stages. Basically, it means that the patients become the test subjects. For someone with AIDS, it’s usually better than nothing. Even then, it was usually pretty difficult. Sympathetic doctors would sometimes arrange access to trial drugs for their patients out of compassion, and some would collect a deceased person’s drugs and give them to another patient. There’s a longrunning theme in Paul Monette’s book (see below) about the attitude of hope and then disappointment when big new drugs would appear on the horizon and either make things worse or just not work at all. Doctors would try radical procedures on willing patients, such as a bone marrow replacement in one case. When the FDA was still moving slowly, AIDS patients went around them, securing drugs from Mexico, where the restrictions were more lax. When one drug (AZT, I think) showed some promise, it was revealed that it could be made at home, so some people would cook up huge batches of it in their basement and sell it for pennies. Doctors, knowing they couldn’t get the drugs legally for their patients, would sometimes connect them with these people.
The gay community, which nowadays seems so motivated and united, when faced with AIDS split. Hard. GMHC and ACT UP brought people together, but it also drove lots of areas apart. Paul Monette (see below) said, “Gay men in the high purlieus of West Hollywood – that next of arts and decoration, agentry, publicity, fifteen minutes ina minispot – would imply with a quaff of Perrier that AIDS was for losers. Too much slease, too many late nights, very non-Westside…I saw a split develop in gay men around that time, as people fled into themselves. Gay liberation had only begun in 1969…yet the solidarity that followed Stonewall wasn’t rock-hard, binding us like the dissidents in Russia. AIDS was the jail with bread and water, but there were gay men who would not hear of it. Too much of a downer.” It forced a lot of people back into the closet. The numbers of AIDS patients who were gay was so high that having it basically outed you to family. That was a much more traumatic thing than it is now (not saying that now is easy, no no no. Back then, the stigma and homophobia was worse.) There is a bit from The Normal Heart where a character talks about how he reunited a former lover with his mother…while the man is on his deathbed. She didn’t know he was gay. Monette calls AIDS like an “inquisition” in the community, as people began to pull away from each other and assess how likely they were to die.
AIDS came right at the end of gay liberation. For a lot of gays, they refused to give up their victories (among which was the right to have anonymous, free sex with multiple partners). There were a number of people who, in the beginning, claimed that AIDS was a rumor spread by conservatives/straights to force people back in the closet. When it came out that AIDS was sexually transmitted, some people refused to either hear of it or to stop their fun.
If you’re looking for some very well written personal experiences with the crisis, I have a couple of books you may be interested in:
Borrowed Time by Paul Monette is a memoir written as the author was taking care of his partner after he was diagnosed. It’s probably the only book to reduce me to a sobbing, quivering mess several times throughout.
Hospital Time by Amy Hoffman is a memoir of a caregiver. It’s disturbing, but very good.
Gifts of the Body is a series of stories about a “professional” caretaker (someone that AIDS patients without family or friends hired to care for them). It’s really interesting in that it doesn’t just have stories of gay men. The most tragic story is a grandmother who got it from a blood transfusion.
The Normal Heart is a play by Larry Kramer that documents the beginning of the crisis in NYC and the foundation of the Gay Men’s Health Crisis.
AIDS Doctors: Voices from the Epidemic focuses on how the doctors engaged with the disease and with their patients, and documents some of the changes to the medical industry as a result of it. It’s decent, but tends to glorify the role doctors played and ignores the many doctors who refused to see AIDS patients or discriminated against them when they did.