Tuesday, November 10, 2009

Why I Left AIDS

I left AIDS in the mid-late 1990's.

I made a conscious decision to stop working on HIV/AIDS, and to stop referring to HIV/AIDS when talking about gay health.

In short, I was over AIDS.

I wanted to force myself into a new idiom, a new way of thinking. I had no idea what it would be, but I had come to the conclusion that continuing to work on HIV/AIDS would be detrimental to me personally, and might well not be helping anyone else either.

I wish I could say that I had some inspired moment, that I had some vision of the future of queer health, some goal in mind, some grand theory. But in truth I had none of those things. Gradually, I began to realize that working on HIV/AIDS felt increasingly distant from my personal experience I noticed that it was harder and harder to interest my friends to get active, it was even hard to know what to get active about.

But maybe I should start a little earlier.

I was a little fagling in 1987, a momentous year in queer history. In 1986, my freshman year of college it began to dawn on me that it was not a passing Ĺ“dipal phase, that my attraction to other guys was not merely admiration of their physical form, to be replaced at some point in the future with an attraction to the voluptuous female form, marriage and children.
This was distressing to me, because my only image of an adult gay man was not what I wanted to become. Don't get me wrong, I didn't want to be "normal", I just didn't want to be lonely, depressed, and ridiculed for the rest of my life.
I quit the crew team, partly because I was not going to be competitive at the level required, but mostly because I just didn't see any possibility of being happy, healthy, and vibrant as a gay man.

I slowly began meeting other gay men, particularly Chris Bartlett and Stephen Gendin. Then in October 1987, Chris invited me to vanpool down to DC for a March on Washington. It totally blew my mind. For the first time in my life I saw happy, healthy, vibrant gay men. I kissed one of them, for about six hours, while driving around from one spectacularly lit patriot monument to another.

I came back to Providence transformed. I realized that I could do this gay thing after all.
My then (and current) roommate calls it my militant phase. I painted pink triangles on the back of my hands. I gave out "queer fries" at the snack bar to anyone who would publicly say they were gay or lesbian. I proselytized to anyone and everyone.

In early 1988, Stephen invited me to "come get arrested". I said "sure" and then it took me a week to ask "what for?" He told me it was about gay rights, and only during the civil disobedience training did I learn that it was really about AIDS, about trying to keep the Health Department from doing widespread mandatory HIV testing, and compiling a list of everyone who tested positive for some as yet to be determined intervention. I kinda freaked out. I had begun to come to terms with the gay thing, but I was scared to death of AIDS and didn't want anything to do with it.

But Stephen was inspirational, and I stuck with it, becoming one of six people arrested in H. Denman Scott's office on the fourth floor of the Health Department. I'm the one in the purple shirt with a green knapsack.

Thus began a long and industrious career with ActUp/RI.

We never needed to get arrested again, it just doesn't take much of a fuss to get on TV in Rhode Island. We disrupted Ed DiPrete's gubernatioral candidacy announcement, we protested the high price of AZT, we joined in national actions at CDC and FDA. I started writing a weekly summary called Bill's News Headlines, a 'zine about all things HIV/AIDS, with a few spicy pictures thrown in for interest.

Under the Reagan Administration, AIDS was largely ignored, until it wasn't. In the late 1980's all kinds of scary talk was coming down, including threats of quarantine. We had a clear and obvious enemy. Those of us young enough and pissed off enough rose up in anger and began a confrontational style of political action that the generation before us was too overwhelmed to undertake.
But when George the first took office, things began to lose traction. Many of our initial demands were being met (AIDS drugs cost less, mandatory testing and quarantine were mostly averted, some government resources began to flow into aid programs, some of the egregious ethical violations inherent to clinical trials of new medications were being abated). The newer issues we were grappling with (needle exchange, anonymous HIV testing) just weren't as sexy. We had a few more big demos (notably a big coalition bash at the Providence Journal, and a fun hootin' and hollerin' when Dan Quayle came to town), but things were starting to taper off. We started meeting with the Health Department, in addition to chastizing them. I even worked there on an internship one semester.
And by the time Clinton came along, all the air got let out of the balloon. Don't get me wrong, Clinton the first did as little as possible to advance the cause of people with HIV, and was arguably one of the worst presidents we've had on gay rights. But the community had had enough. It just wasn't possible to gather a crowd of pitchfork-wielding townspeople any more.

By this time, I was working in HIV/AIDS clinical research. Doing some statistical presentations of data from clinical trials, and medical record abstractions. I began keeping a list, for the medical researchers, of everyone that had been treated for HIV in Rhode Island, what major infections they had had, when they started treatment, etc. I felt pretty conflicted about that, and at the same time fascinated by the stories I was reading between the lines of lab reports and hospitalization records.

The job took me to an AmFAR conference in San Francisco. I fell in love with the city instantly, despite having an earthquake knock my hotel bed around the room my first night in town. I loved how it smelled. I loved the hills and the views. It seemed impossibly magical.

I vowed to move to San Francisco at the next opportunity, quit my job in HIV clinical research, and had all but bought the plane ticket when I got invited to take a job with the tuberculosis and HIV basic immunology lab at Brown. The pay was good, very good. And I figured, what the heck, I can do this for a couple years more, then go out to San Francisco. In the meantime, for several years I got in the habit of taking a month-long vacation in San Francisco every January, staying at the YMCA on Golden Gate & Leavenworth. Everything I needed to pack for a month fit in one bike messenger bag.

Well, I worked on that stuff for a few years, developed a mathematical algorithm for predicting amino acid sequences that would be likely to trigger an immune response, and had a lot of fun while doing it. Got to work with some very motivated and bright undergrads. Got to travel to a bunch of conferences. Even got a pat on the back from Tony Fauci at one point.

But at some point, I realized I needed a break from the frantic pace of HIV research.
HIV/AIDS was the most important thing in the world, or so it seemed. Everything was urgent. HIV/AIDS was an exception to every rule. But after the better part of ten years on the cutting edge, I got weary of being cut. I needed a break.

I began looking for another job, and quickly found it, in the much tamer field of gerontology. I got to work with incredibly bright, talented, and caring people. People who were interested in getting things done carefully, slowly, correctly, not living in a state of perpetual emergency. I had an amazing boss, who really helped me work much more effectively with other people (do you remember the 7 habits of highly defective people - I had probably 4 of them - I was not an easy person to manage).

So at first, I was just taking a break, not really thinking about HIV/AIDS, except about how futile it seemed to be to think about it.

At some point, though, I did make a conscious decision that I would not work on HIV/AIDS again. I wanted to force myself to think differently, to force myself to be more creative, to develop a new language and vocabulary, and whole new mindset.
As I was struggling to do that, I put together a forum at Brown about the Post-AIDS phenomenon. I invited Chris and Stephen as panelsits, after getting re-connected with Chris at the Boulder Gay Men's Health Summit, and also invited Justin Smith, a next-generation activist. It was a fantastic discussion, and there was plenty of passionate but respectful argument.
I made an analogy at the outset that Post-AIDS, in my mind didn't mean that AIDS was over, any more than Post-Modern means we are no longer modern. But the shock of modernity is largely over. The automobile has gone from being a bizzarre new sight on our city streets, crowding and running over pedestrians and cyclists, to being banal, a fact of life (though still running over pedestrians and cyclists - I've got the chronic pain to prove it - it's just banal and mundane now). Electric lights are no longer a showy extravance. It is not that modernity is done modernizing, but rather that the progressive development of wonderful, exciting, and dangerous new technologies is expected and welcomed.
My analogy to the term Post-AIDS was that the shock of AIDS was over, that we were now living in a world where AIDS is part of life, and that public health prevention efforts revolving around HIV as new, threatening, and catastrophic may have worked in the past, but would no longer work in the future. We needed to find new language, new ways of thinking about public health's role in prevention, because the tools of fear and hyperbole have run their course. We are in Post-AIDS now, but HIV prevention has yet to catch up to that reality.

Some ten years later, there are some exciting new developments on the gay health promotion front, such as Chicago's How are you Healthy? campaign, which is all about tying the three words "Gay. Sexy. Healthy." together in new and interesting combinations. The I Am Gay And... campaing in New York City is another one I like a lot. But these two are exceptions.
We're still bombarded with ad campaigns like this one, this one, this one, and this one that either play on fears and negative imagery, or treat us like we're just not knowledgeable enough to know what's good for us.

Well, I've wandered and rambled quite a bit here, and I'm not sure that I've adequately answered the original question - why I left AIDS. But it's a start.

I'm really curious about what some of the stories of the thousands of gay men who have left AIDS work - what did it feel like? What are you doing now instead? Do you, like me, feel conflicted about abandoning the AIDS work, even if what you're doing now is much more productive and forward-looking?

Wednesday, November 4, 2009

Quick Trip East

Went back East for a week to see my parents. Here they are walking through a small orchard of apple trees planted a very long time ago (probably about 100 years or so) that I've been pruning. The apples used to taste awful but now they're pretty good. They are varieties that are not commercially viable (too small and bumpy), so you can't find them in stores, even specialty markets.
My mother says that one of them is called a "banana apple" which she recognizes from her father's farm in upstate New York. It's true, it's an apple with a faint whiff of banana as you bite into it.

Also stopped into Providence to try to do some work on my house. Got a bit frustrated because the windows I wanted to replace I have to special-order, so mostly I frittered around with some electrical work and painting instead.

I've come to the solid realization (yet again) that I need to work tirelessly towards getting a full-time teaching job. Not only do I love teaching (and I'm getting pretty good at it if I may say so), but I need to be connected to the land in Vermont that I've put so much time and effort into, and the best way to do that is to have the summers off.