Saturday, December 4, 2010

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.


Leonard said...

Albert John Breen, best friend
Tanner (Richard) Boyer, first love
Bob Mazzochi, great friend
Phil Stout, amongst the first to go
Robert Sandoval, dear person

You´ve reminded me of those I have loved in life and still love.

Counterlight said...

Something else that seems to have been forgotten is the large role our Lesbian sisters played in the whole disaster. They were there for us on their own volition.
They were far better friends to us than we ever were to them.

IT said...

What is horrifying to remember is how many people said AIDS was "God's revenge" agains the Evul Homasekshuls. Even intelligent people. So many vicious and brutal remarks. So much ignorance and fear. So much willingness to see the gay community as the only victim, rather than simply the canary in the coalmine. So many voices and talents snuffed out.

I still remember reading an article in the SF Chron at the very beginning, on the mysterious "gay cancer" that was turning up. And the discussions in the labs around me about whether to start working on it. Ironically, it's all those studies on HIV that developed a new gene transfer methodology, the lentiviral vectors.

You are right, counterlight, it is NOT over. We've turned it here in the west into a chronic disease, but the full ravages of the fire are still roaring through Africa and other parts of the 3rd world, mutating away. We ignore that at our peril; viruses know no boundaries and airplanes are a very efficient disease vectors.

As long as the gay community continues to be reviled by our fellow Americans, however, HIV will continue to be "The Gay Disease". Too many of those opposed to us equate "Gay" to "HIV" and use that as a further stigma. They make evil use of this. THey don't simply think "HIV only affects gays", which is bad enough. They flip it over to think "all gays have HIV". Their mindset is that the gay community is defined by bathhouse sex.

And so they have fits that their blond-blue-eyed idea of Christ could ever be equated with HIV patients. Yet where else would he be? HIV is the leprosy of the modern era.

Counterlight said...

I think it's the gay thing that gives AIDS such a stigma in Africa, never mind that it is transmitted through heterosexual contact over there overwhelmingly. I hear the same is true in south Asia and in Eastern Europe.

You're right IT. It's the leprosy of our time, and the gay boys were just the canaries in the coal mine.

JCF said...

I lost precisely *one* friend during the Plague Years (Round 1?). <*>

I don't know how surviving gay men (among other survivors) did it. Carry on, as your friends dropped all around you... :-(

<*> Jim Hamblin, Presente! (and RIP).

Mary Clara said...

A passionate post, full of truth. Doug, you are a prophet as well as an artist.

Remembering Ken, a rare and gentle soul, who 'integrated' the altar guild at Memorial Episcopal, served on the vestry, and gave of himself in a thousand ways, in and out of church. I imagine he was one of many in his generation of gay men who first had to suffer for years from prejudice and rejection, self-doubt and self-hatred, and then when they had just begun to rejoice in who they were, AIDS came along and provided them with a slow, cruel death. I'm also thinking of dear Frank, who took me to the senior prom 51 years ago, and who was very likely a casualty too. You are so right to call us to remember these fallen ones we knew so that we don't forget all those still suffering and still at risk.

Göran Koch-Swahne said...

A very fine post. May it be read widely!

Delia A. said...

I was going to share my little story about how I, as a rather shy and always-perfectly- behaved high school freshman in 1988, became incensed and spoke back to my Health teacher, punctuating my mini-speech by telling her she should stick to coaching girls’ volleyball, after she told our class that AIDS was sent by God to punish and get rid of gays and that we should rejoice in His almighty power and how I, being surrounded in rural Texas by religiously conservative family of the same ilk as she, could possibly learn to think otherwise were it not for the fact that I always listened to my heart above anything else, including some feeble interpretation of The Bible. Then I heard Fran Lebowitz in my head telling me to basically ‘shut it’, so *delete* went my little story.

A couple of weeks ago I read Wojnarowicz' Close to the Knives for the first time. I have never been so moved. Reading it, I felt as if he was a sort of prophet, an oracle, something transcendent and holy, at the very least an old soul reaching inconceivable depths of human sight and emotion. I did not know him and only very recently became introduced to his art and writing, yet here I am, now at 37, mourning him, keenly sensing his absence and more incensed than ever, as if he were my own brother, or lover.

Thank you for your post.

Counterlight said...

Read the comments policy please.

JCF said...

Is that directed at Sad Brad (or someone similarly from the brain-/heart-"challenged" ilk)?

Wormwood's Doxy said...

I guess I missed this piece in the post-World AIDS Day exhaustion. It's sadly wonderful, Counterlight.

As you noted most of those living with (or acquiring) HIV now are people of color. Black men who have sex with men (MSM)are at greatest risk--a 2008 CDC study of 21 major U.S. cities found that 28% of Black MSM were HIV-positive, compared with 18% of Hispanic/Latino MSM and 16% of white MSM.

More than 18,000 people die of AIDS in the U.S. each year. And more than 56,000 are newly infected with HIV each year.

We still have a lot of work to do...

The Religious Pícaro said...

Something similar is true with other STIs, to some extent. I remember being afraid of gonorrhea and syphilis as a teenager, because those were the worst things you could get (from sex), Then herpes came along to give us something incurable to worry about, and the clap and syph faded into the background. ThenAIDS came along, and that would kill you, so herpes didn't seem so bad and it faded into the background, too. Then AIDS survival rates went up and infection rates in the gay community went down and -- it doesn't seem so prominent in the public mind. I think the difference is that no other disease displaced AIDS. Could some other fear have replaced it to some extent?

Kirkepiscatoid said...

Oddly enough, Bill, I think 9/11 replaced it.

Kittredge Cherry said...

Today I am writing text to go with your crucifixion painting “Jesus Dies,” including references to Wojnarowicz. I found this powerful post in the process. I must say that the photo of Peter Hujar’s face at the bottom of this post really fits in with the somber mood as I contemplate “Jesus Dies.” The beautiful face of a gay martyr gone too soon.

Rupert of Hentzau said...

We're very lucky that AIDS struck so many white men as early as it did. Can you imagine how long the power structure would have ignored it if it had remained a disease of women or of black and Latino communities? Or if it had stayed in Africa and Haiti, slaughtering millions? Would anyone here have given a dollar at Christmas? Maybe.

But successful white men, even the ones with "something to hide," were astounded and outraged to find themselves treated the way minorities had always been treated. They were ready to demand their rights, and enough of them knew how to do so to create the modern revolution in the gay world. The changes have not only been in the West and among whites, but much of the infected world (U.S. prisonmates?) is still ignored.

I hate to call something as ghastly as AIDS a "mixed blessing," and I lost plenty of friends and partners (and went through a bunch of years too terrified to get tested because I was sure I'd be positive -- I was wrong, what an astonishment!) -- but it has transformed our society's attitude towards gays, it has transformed gays' attitudes towards themselves, it has had a certain effect (little enough) on Big Pharma and on government medical agencies, it has moved -- slightly enough -- on the minority fronts.

But we need reminders. As Doug points out, the immediate response was not organized and heroic, it was panic. Act-Up and its fellow activisms emerged mighty quickly in historical terms, but it didn't feel quick at the time. There were years we all felt terrified, ignored, half-dead.

And the conspiracy theories! Whole books could be written about the conspiracy theories.

Thanks for the post. I should read Wojnarowicz's book.