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Twenty years later 

The exemplary and angry work of ACT UP

It's been 20 years since the formation of ACT UP -- the AIDS Coalition to Unleash Power. The group marked its anniversary in San Francisco and New York two weeks ago with demonstrations and a speech by Larry Kramer, the firebrand author whose enraged rhetoric launched the organization. ACT UP became quickly famous for its theatrical protests and enormous impact on AIDS research and treatment.

Remembering that time is still immensely painful for those of us who watched the disease kill most of our friends. In 1987, the year of ACT UP's founding, Ronald Reagan had yet to make a speech about AIDS, which had raged for six years and already killed 30,000 Americans, including my first partner, Rick Bowles.

At the time of Rick's death, AZT, the lone treatment for AIDS, was only available by special request because the FDA had not yet approved its general use. Rick died on Mother's Day, waiting to get the drug. The doctor lost his paperwork.

ACT UP, through some very theatrical actions, convinced the FDA to speed up approval of promising drugs. Then, when Burroughs Wellcome was granted expedited approval to market AZT, the company charged nearly $10,000 a year for it. ACT UP literally closed down the New York Stock Exchange in a dramatic protest. A few days later, Burroughs Wellcome lowered the drug's price substantially. The group had many such successes.

ACT UP was controversial with just about everyone. I well remember friends who disapproved that I attended meetings of the Atlanta chapter. Gay people have a long history of trying to accommodate the dominant culture either by hiding in the closet or not rocking the boat. ACT UP was just the opposite and for years many gay people continued to criticize the organization's angry style, even though there is no question that it saved and prolonged the lives of countless thousands.

Imagine what it was like in those years. When Rick died, a test for HIV had only recently been developed. But because there was no widely available treatment, nobody wanted to take the test. A positive result was an almost instant death sentence. We survivors watched our friends turn into skeletal figures in a matter of a few months. It was often left to us to tend them in their dying days because some doctors and nurses refused to enter their hospital rooms.

I spent day after day in hospital wards visiting dying friends, cleaning the shit and blood from their bodies. Many died at home, often by assisted suicide. The memories are bizarre and disjointed – a sudden gasp, Handel playing on the stereo, counting out pills and wondering if there were enough to do the trick, a dog lying in bed beside its owner's corpse, parents yelling at me on the phone to cremate the body, the black hole created by the sudden departure of consciousness, the negation of existence, wanting to be dead myself. The inner wailing that wouldn't stop. The sound of the clock.

I frequently got notes from the dead. Dying friends would write these toward the end and someone would mail them after death had come. I have a collection of them.

If gay people ever felt hated, it was then. You turned on the TV and heard William F. Buckley declaring that the HIV-positive should be required to have their buttocks tattooed. Reagan said nothing but congressmen literally proposed creating concentration camps. Jerry Falwell and other monstrous perverters of Christianity called AIDS "God's revenge on homosexuals." People complained that tax dollars should not be spent to research or treat a "gay disease."

Those of us who hadn't died were waiting for our turn. It never occurred to me early in the epidemic that I wouldn't soon die, too. The grief and fear were overwhelming. One's own death seemed always imminent. It could start with a cough, a headache, sweating at night. Nobody talked about it. We were largely silent.

But the anger was simmering, watching Reagan's government largely ignore the crisis for six years. ACT UP tapped the anger, taking as its motto, "Silence equals death," which it pictured over the inverted pink triangle by which the Nazis identified homosexuals during the Holocaust. Our battle cry was "ACT UP, fight back."

ACT UP harnessed our anger and put it to the good use of civil disobedience. It also taught people the necessity of being responsible for their own health and promoted universal health care, well before anyone else took that seriously. ACT UP is the story of how a small number of people with vision far ahead of the majority can change the course of history. We need such people now as much as then.

Cliff Bostock holds a Ph.D. in depth psychology. His website is www.cliffbostock.com.

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