Because I don't have AIDS, nor HIV at all, I feel a bit sheepish giving my recollections of the advent of the disease in American culture. While this diary is a personal recollection, marking World AIDS Day, it is not a memoir by one of its direct victims. Rather, it's a memory of how, during my the '80s, knowledge of AIDS slowly entered the lives of sexually active young adults like me at the time. In years to come, I would know people who lived with HIV, who lived with AIDS, and who died of AIDS. But not in 1982, when many people around me first learned of the disease. It's also the story of how people responded -- to their credit or discredit.
I'll be interested in learning how many other people here had the same experience that I did. As I recall, I learned about AIDS from Mother Jones.
Update: I picked the wrong day to have to leave early for work. I've rarely had a diary with better comments than this one. I urge you to read them, to read the Mother Jones article to get a taste of the history of the time, and to read And the Band Played On by the amazing Randy Shilts -- one of the best reporters of my lifetime and himself a victim of HIV/AIDS. Thank you all for a wonderful discussion.
AIDS hits the media -- with second billing
In November 1982, Mother Jones had a controversial cover story about what most media were still then calling "venereal diseases" (VD) called "Fear of Sex: Disease in the Age of Desire"; for reasons that you can probably imagine, it led to a debate that would probably be largely repeated if it first came out today. (If that link doesn't work for you, search on "Mother Jones" and "herpes" and "1982.") The big news was the advent of the herpes simplex virus, which was screwing up the lives of those of us who, for a short period of time, could have sex without fear of syphilis and gonorrhea, but need not yet worry (or so we thought) about new up-and-coming diseases. Tagging along with that big news was the rising incidence of a cancer called Kaposi's sarcoma. Here's how it begins:
The incidence of sexually transmitted diseases (STDs) has risen steadily for the past 20 years, with two diseases in particular having recently become the focus of widespread concern. One is herpes, a virus named after the Greek word meaning "to creep or spread." Herpes has certainly been around since the days of the Roman Empire -- when the Emperor Tiberius banned kissing at public ceremonies -- but has reached epidemic proportions in the past decade. Thanks to extraordinary media attention, herpes is not a household word. The other disease is a virulent cancer called Kaposi's sarcoma, one of a group of diseases (characterized by a breakdown in the immune system and thought to be sex-related) that have appeared, so far, mostly in gay men.
Herpes is the topic of page 38, the half-page above the graphic on page 39, and about half of page 40. Then there's a bit on chlamydia, which was also news to me and most people I knew at the time. Then, at the bottom of page 40, we get to the last disease covered, the disease that mostly affected gay men (although we're informed that Haitians and IV-drug users are also common victims).
Gay men have particularly strong reasons for being cautious [about new sexual partners]. Within the gay community there have been startling rises in gohorrhea, hepatitis, amoebiases (from an amoeba) and giardiasis (from a gastronintestinal parasite). Added to the more common illnesses is a group of diseases that, while still rare, are causing a trembling among doctors and gay men. They are known by the acronym AID, which stands for acquired immune deficiency. The heading covers a number of diseases, among them Pneumocystis carinii pneumonia, Toxoplasma gondii infections, and Kaposi's sarcoma.
Yes, it wasn't even "AIDS" yet; just "AID."
Three possible causes for AIDS were reviewed: a response to accumulated insult of the body by too many STDs, some relationship to drug and alcohol use, and a new kind of virus, the Human Cytomegalovirus, part of the Herpes family. Retroviruses as a cause were yet unknown; if you want the story, please read Randy Shilts's magnificent 1987 book And the Band Played On, covering much the same period as this diary. Other sources may tell aspects of the story as well or better, but this is the groundbreaking one that everyone came to know.
I can't quote too much more of the story for copyright reasons (though thank you Google Books for letting me get this far!), but I urge you to read it yourself to put yourself in the shoes of progressive readers in 1982. Much of the article addresses the effect that the advent of these new diseases -- which unlike the most prominent ones prior to that, were not curable -- was changing sexual ethos; this was what was so controversial. The author, Nora Gallagher, who later became a prominent writer about religion, saw the advent of these diseases as both forcing and facilitating sexual moderation -- both in number of partners and the pace at which sexual relations began. Letters in the months to come indicate the response to what some termed her scare tactics that appeared to reimpose an old-style morality.
Gallagher wrote sensitively, but with an eye towards suppressing excess, of the responses of the gay community to the advent of this new disease. Reading through the last half of the story, you can see why she was boggled by what might have seemed to be a Biblical plague. She gives fair coverage to those who resisted calls of doctors to moderate behavior:
Edmund White, coauthor of The Joy of Gay Sex and author of States of Desire, cautions against embracing intact the doctors' advice in an area where moral prescript can become uncomfortably mixed with medicine: "People are very vulnerable to doctors, and gays and particularly vulnerable to moralistic garbage. The sexual revolution is momentarily breaking down or pausing because of technological problems. People who are getting moralistic towards it, or preachy, aren't going to stop anyone. The only solution is a technological one. We've got to get prophylactics against these diseases."
White, by no means unworried about K.S. and other AID diseases -- he has helped start a fund to disseminate information and support research on them through a group called Gay Men's Health Crisis -- says that what concerns him is the moral tone and the hysteria that is present in new York. "At St. Vincent's Hospital," he says, they are calling it the Wrath of God: 'Oh, here comes another case of the Wrath of God'" And, he added, a therapist told a friend of his, who is gay, wouldn't you rather be heterosexual than dead?"
Gay men talk of fearing a quarantine, a "reason to round us up," while patrons of a West Hollywood bar found leaflets on their windshields that contained reprints of a Newsweek article on diseases that plague gay men and an offer to redeem themselves at a local fundamentalist church.
One can't do a proper history of an era based on one magazine article, but I'm not the only one, in years past, who has reported remembering this one vividly. If you want to get a feel for the time, I recommend it highly. In my case, it would be about another three years before I met someone who knew, and let me know, that they had AIDS. It would be less time before I ran into people arguing for quarantine.
The horrific responses.
In my circle, in college and early graduate school in Southern California, people were pretty thoughtful for the most part, or as much so as people in their early 20s get. I was in student government, which had a large gay contingent, and over the course of the year or so I recall having sex with lots of partners go from being a point of pride to a point of scorn. The gay men were aware of the dangers and took them about as seriously as we straight guys took the danger of getting someone pregnant; not exactly religious devotion to safety, but still some discernible changes in behavior.
Things changed when I went to grad school in the Midwest, at Michigan. Maybe it was the place, maybe it was the time, maybe it was the circles with which I had contact, but things were getting uglier. Maybe it was Ryan White. When Ryan White, the 13-year-old schoolkid who got AIDS from a blood transfusion, wanted to continue attending his public school in Kokomo, it set off a public shitstorm to match any other. Rock Hudson's deterioration and death -- after he had kissed Linda Evans onscreen -- whipped up a further frenzy in 1985. Suddenly AIDS was firmly in the news -- and we found out what people thought. We found out that the fears of the gay community were well-founded.
One doctor I knew of, in an early threaded computer forum much like this one, wrote that there was no point in trying to save gays and the poor (whom he said would inevitably follow them as vectors of disease.) They were doomed. Medical providers should not be required to risk their lives by treating them, he said. We still didn't know how the disease would be transmitted. He advocated quarantine as a public health measure.
A friendly professor sidled up to me one day with some advice: I was a scientist in training, I was told. I should understand that even if the studies said that AIDS could only be transmitted by exchange of bodily fluids, I shouldn't trust that the studies were properly done. Refusing to shake hands with anyone I knew to be infected, or who might be infected, was just common sense, just playing it safe, nothing to be ashamed of.
Homophobia had been a constant in American life, of course, but now gays were not merely painted as spiritually polluted, but as potential killers. Stories abounded of how gays were using their own blood as a terrorist bio-weapon, acting less out of a political agenda than an encompassing spite, ensuring that others would encounter it and be infected. (Maybe it's a blessing that the Internet wasn't around during the Reagan Era.)
One thing struck me more than any other, though, and it's stuck with me in general terms although not specific detail. It was a column written by one of the main neoconservative leading lights -- I think Norman Podhoretz, but it could have been Irving Kristol or one of the others -- that I have searched for extensively but been unable to find. (One of you out there who has NEXUS can probably summon it with a languid wave of your hand. If you find it, I'll link to it) The thesis was beyond how we in the Straight Majority had to protect ourselves from the Diseased Gay Menace. It was, believe it or not, worse.
The author, as I recall, argued against finding a cure, or at least a vaccine, for AIDS.
Because that sounds completely insane, I want to remind you that in this early history of our knowledge of the disease, the belief was that AIDS was a contained disease, limited to "guilty" gays and IV drug users and "innocent" victims of blood transfusions. Therefore, a cure was for "them," and wouldn't help "us."
What would it do, the writer asked?
Curing or preventing AIDS -- then a distant aspiration -- would simply allow homosexuals to go back to engaging in promiscuous sodomy, which was debasing our society. Our society was therefore better off if they didn't. Therefore, AIDS was good.
That's what things were like 25 years ago. That was either John Podhoretz's or Bill Kristol's father, if memory serves. (Do let me know if you find it!)
I don't remember when popular opinion on AIDS shifted. If there was a magic moment, it may have been when Magic Johnson announced, in 1991, that he had contracted AIDS -- but that he was going to beat the disease. Simply the fact that he could make that claim with confidence suggested that things might be different. I remember, that night, sitting in my office listening to Larry King's radio show -- hey, it was pre-Internet! -- and hearing caller after caller assure us that Magic would be dead within five years. But there were other callers who said that they believed that if anyone could beat it, he could.
Eighteen years later, he's still alive, still going strong, and the thoughts that anyone could have seriously ever proposed quarantines, proposed just letting people die without medical care, proposed not curing the disease so as to cut down on the amount of anal sex taking place in the world, seem almost unbelievable. But those are my memories of AIDS during the Reagan years.
I look forward with trepidation, those of you who are of similar vintage, to hearing yours. I think that this is a history worth retelling.