AIDS Disappeared

... down the old All-American memory hole along with a quarter million dead.

I'm reading David Wojnarowicz's Close to the Knives again after more than ten years. The passage describing Peter Hujar's death from the disease is more powerful than I remember. What a writer! and with only a limited education! Wojnarowicz never finished high school. His first hand account of the AIDS catastrophe will bring back a flood of memories for those who lived through it. It certainly did for me.

I'm amazed at how thoroughly the whole disaster has dropped off the radar. Everyone assumes that it is "over." It is "over" only in the sense that the threat of nuclear war is "over." Now, it seems to be in the process of being forgotten, perhaps deliberately. HIV infection rates among young gay men in New York are on their way back up as safe sex becomes so passe.

I cannot help but wonder how different the public and official response to the disease would have been if it swept through the affluent suburban white population. All men may be created equal according to Mr. Jefferson, and they may be officially equal in the eyes of the law, but they are certainly not equal in the eyes of government policy or their neighbors. AIDS first struck in this country in the midst of a still much despised minority, gay men.

Wojnarowicz reminds us of just how bad the response was for the first 10 years of the epidemic. There was the official policy of malign neglect by the Reagan and Bush I administrations (at the time, Haiti had a more enlightened and successful AIDS policy). There were all the stories of panic. William F. Buckley (who usually knew better) proposed tatooing HIV positive gay men. There was Proposition 64 out in California to quarantine all gay men in internment camps, cooked up by paranoid cult figure Lyndon LaRouche and enthusiastically endorsed by Congressman William E. Dannemeyer. The Catholic Archdiocese under Cardinal O'Connor successfully blocked efforts by New York City's public health department to promote safe sex practices. There was the constant distinction in political rhetoric and in the commercial media between "innocent" AIDS victims and "others" (i.e. gay men). The most famous of all of those "innocent" victims, Ryan White insisted, to his credit, that all AIDS victims were innocent.

I can remember when those diagnosed with AIDS were immediately cut off by the insurance industry. Many who had been successful affluent professionals died in poverty, as well as in agony, because of these policies. I remember that my mother had a terrible time for awhile finding health insurance because she was in a profession with so many gay men, physical therapy. Her employer's health insurance company cut everybody off, and it was a long time before they found another provider. I remember when legions of newly uninsured gay men found themselves admitted to Saint Louis City County hospital where they were treated very badly by a hostile staff. They found themselves prey to religious fanatics and petty criminals encouraged by the hospital staff. There was only a handful of doctors in Saint Louis prepared when the epidemic hit the area, and a smaller number willing to play the system to keep their patients out of City County and to get them cared for. To their credit, Saint Mary's Hospital in Saint Louis had a resident immunologist who prepared his staff for the disease, and was ready when the epidemic struck. Barnes Hospital had good care provided you had a doctor willing to work the system to get you in (Barnes was notorious for turning away the uninsured in those days).
Then there were all the landlords in Saint Louis evicting AIDS sufferers and the HIV positive. I remember Father Charles Bewick, an Anglican priest from London recently fired from the Anglican Institute in Saint Louis (and recently hired by my parish as an assistant priest) founded Open Doors, the first advocacy group for housing AIDS sufferers in Saint Louis, and perhaps one of the first such groups in the country. He faced torrents of abuse from landlords and property owners, and he suffered from the disease himself, but, he never backed down, and succeeded in keeping at least a few from living in the streets.

I consider myself to be very lucky. I continue to test negative for the disease. I certainly lost a lot of friends, but I never lost partners or family to the disease.

The response of the gay community at first was not quite the heroic one we've come to believe. The first response was denial. There were accusations that the disease was everything from a media hoax to a genocidal government conspiracy. Those now legendary support and treatment groups were the creations of desperate necessity. It soon became clear that there was no help coming from a hostile public or hostile government who would have been only too pleased to see the disease rid them of a nuisance population. AIDS sufferers were sitting ducks for all kinds of quacks and frauds. Wojnarowicz writes about his dying partner, Peter Hujar, requesting to be driven out to a "doctor" out on Long Island who treated dying AIDS patients with injections of typhoid. Wojnarowicz's account of the trip out to that "doctor" is harrowing.
Desperation drove the aggression of ACT-UP in its early days (Wojnarowicz was a member and participated in some of their confrontations). The famous/ notorious ACT-UP strike on Saint Patrick's Cathedral in New York that disrupted a Mass was seen at the time as self-defeating over-reach by the group. In retrospect, it may actually have been a breakthrough. It sent a clear message to a lot of people beyond the cathedral walls that those in positions of power and responsibility would not be safe from ACT-UP or other activists. If activists are willing to hit the Catholic Archdiocese of New York, disrupting Mass in the cathedral, then why should Pfizer or Glaxo or Blue Cross or the Centers for Disease Control, or the federal government assume that they would be safe from them? These extreme acts (the most extreme was probably throwing cremated remains on the White House lawn) eventually kicked the ogre in the shins with sufficient force to get his attention and to make him rethink his policies. A lot of people fought hard (and died hard) to win those government programs and insurance reforms for the treatment of AIDS patients. Even the medication "cocktail" had to be fought for. It was the creation of only a handful of researchers, and then there was a long hard fight to make it affordable and available to anyone beyond the most affluent.

So, now we assume that AIDS is "over." Far from it. The disease is only on stand-by. The creators of the cocktail are quite clear that they have not invented a cure. They've only delayed an inevitable death sentence. People still die from the disease. It is no longer the immediate death sentence that it once was. We now talk of living with the disease, but most who have it will eventually die from it. That happened to my good friend John Boone over the summer. He had the disease for years and was on extensive medication that kept him reasonably healthy.

Just because we're tired of hearing about the wolf doesn't mean he's not still at the door trying to get in and kill us all.

Now it appears that the face of AIDS has changed its color. It is no longer exclusively a disease of gay men. White gay men were the public face of the disease for a long time (never mind that it affected minority gay men disproportionately). Around the world, the disease overwhelming affects heterosexuals and is passed through heterosexual sex (especially in Africa and increasingly in southern Asia and eastern Europe). Another very despised group disproportionately affected is intravenous drug users. AIDS forces societies into very existential ethical questions: what to do with undesirable and superfluous populations. People of decency and good will are rightfully horrified that this is even a question.

"Normal men do not know that everything is possible," said David Rousset, a journalist and survivor of Buchenwald.

David Wojnarowicz's photograph of Peter Hujar
taken shortly after his death in 1987.