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The other day I was leaving Moe's Books in Berkeley with a fresh-bought copy of Ann Patchett's State of Wonder in my bag when a newspaper on the free-newspapers rack by the door caught my eye. It was this week's edition of the Bay Area Reporter, and the headline article is what grabbed my attention: 25 years later, activists recall ACT UP's legacy, by longtime B.A.R. journalist Liz Highleyman.

There were a few things about this article that made me take another look, then pick up a copy of the paper and read.

First, I was involved in the early days of AIDS activism, though I worked more closely with a group called Stop AIDS Now or Else than with ACT UP per se. SANOE started as a sort of underground spinoff of ACT UP, a group that formed to plan a disruptive political action that would have been thwarted if it were planned publicly. Surprise was our friend. We surfaced for the first time to blockade the Golden Gate Bridge in 1989, and continued to work in a similar vein over the course of several years. I went to a few ACT UP meetings in San Francisco and found the scene too sprawling to feel I had a place there.

Anyway, second: it was sobering to see a political movement of which I was a part being remembered as quarter-century old history.

Third, the front page photo, snapped by photographer Rick Gerharter (who I remember as a camera-wielding fixture at demonstrations in the 1980s) included two people I recognized immediately. One was an old friend, comrade, and fellow student of Tai Chi whom I haven't seen in quite a few years. The other was a former lover, who lost his war with HIV not many years after our brief relationship.

The article is a well-drawn encapsulation of a political movement that substantially changed how people relate to doctors and the health-care industry in the U.S. Before ACT UP, people by-and-large trusted their doctors to know best. Doctors and scientists were the ones with the training, the degree, the authority. Since ACT UP, and especially now with the help of the intertubes, patients advocate for themselves individually and in organized groups. ACT UP was a game changer in the history of U.S. health care, and, as Highleyman's article points out, a deep and lasting influence in late-twentieth and this century's U.S.-based social justice movements.

But the photo also served to remind me that an inescapable legacy of that era is the loss of friends, lovers, and comrades who didn't survive the ravages of AIDS. Everybody of a certain age, in pretty much any of my circles -- professional, political, artistic, local -- can reel off a long, sad list of friends and lovers who died way too young. These many years later the wounds are old scars, the sort one has learned to live with. David S-- was in his early thirties when we were an item, and he gave me a hard time when he imagined that I imagined him perhaps a smidgen too old for me. I was six or seven years younger.

Not long afterward David was gone. Nowadays, "early thirties" strikes me as wet behind the ears more often than not.

David had an empowering time at the October 1988 ACT UP demonstration at the offices of the FDA in Rockville, Maryland, which is where the image accompanying this week's B.A.R. article was photographed. As a souvenir he brought back one of my all-time favorite Demonstration Chants In History. When police readied themselves to haul away protestors blockading the FDA building they donned rubber surgical gloves, to protect against the imaginary danger of becoming infected by touching someone infected with HIV. In response, demonstrators scolded them for their distressing fashion faux pas: "Your gloves don't match your shoes! Your gloves don't match your shoes!"

Nothing like a little farce to lighten up a demonstration about life-and-death access to health care.

It turns out you can glimpse David S-- speaking to a camera through the narrow window of a police bus after his arrest outside the FDA headquarters in How to Survive a Plague, a film directed by David France that chronicles AIDS activism in the U.S. The film showed at Sundance earlier this year, and this weekend in Manhattan (it'll also be shown at MOMA in New York tonight at 6pm Eastern). The film will soon be broadly released.

Amy Goodman interviewed the director and founding ACT UP member Peter Staley this past Friday on Democracy Now! David S--'s few seconds in How to Survive a Plague is excerpted at ~37:30 of the DN! video. Says Peter Staley toward the end of the interview with Amy Goodman: "Anybody who wants to change the world should run to see this film."

David S--, Stephen, Jason, Jay, Bob, Roger, Colin, David E--, Paul, Tom ... and so many more. Gone, but not forgotten.

Thanks to friend, fellow-writer, DK diarist, and longtime comrade in the AIDS movement and beyond, Kate Raphael -- quoted in this week's B.A.R. article -- for calling my attention to Amy Goodman's interview on Democracy Now! This diary is cross-posted from the author's blog, One Finger Typing.

Originally posted to Steve Masover on Mon Mar 26, 2012 at 09:26 AM PDT.

Also republished by Angry Gays, LGBT Kos Community, and HIV AIDS Action.

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Comment Preferences

  •  Excellent diary (1+ / 0-)
    Recommended by:

    thanks for writing it.
    I remember the anger and mostly the desperation to get the fing government to start doing something.
    Way too many unreligious leaders were saying this was God's punishment for that lifestyle.
    I always wondered what the kids that had hemophilia had done to God and needed to be punished.
    I watched my brother go from a robust 180 lb man to less then 70lb when he died.
    I watched him lose his mind from CMV.
    I watched friend after friend die.
    I went to many funerals.
    I went to the AIDS quilt in DC.
    The whole Mall was full of quilts.
    I thought, just maybe this picture will get people's attention.
    But today, the infection rate is just as high.
    Today kids do not understand the battle.
    They just think of it as a disease you take meds for the rest of your life.
    I am angry that many of those that fought SO DAMN HARD died in vain.


    by snoopydawg on Mon Mar 26, 2012 at 09:59:13 AM PDT

    •  Perhaps not so much in vain... (1+ / 0-)
      Recommended by:

      ... though it surely is hard to lift one's attention from grief to see the way the deaths of those claimed by HIV/AIDS were more than simply cause for grief.

      Yes, our friends and comrades and lovers are gone, and gone too soon. But they fueled, and many of them participated in, a movement that gave sick people a voice in health care that had never been so powerful in the history of modern medicine; and nurtured a spark of militancy that has erupted more than once since ACT UP's heyday.

      I haven't seen the film How To Survive a Plague yet (I don't live in New York), but I will when it is released on the Left Coast. It's important, I think, to remember what we have built, even from ashes and loss.

      •  Yes in vain (1+ / 0-)
        Recommended by:

        since people are still being infected at the same rate.
        they also were trying to educate the public about how HIV was spread.
        Free condoms are available everywhere, yet kids won't use them.
        I understand what you are saying about the medicine, and the power of ACT UP, but my point is, the infection rate.


        by snoopydawg on Mon Mar 26, 2012 at 12:08:06 PM PDT

        [ Parent ]

  •  sorry, this is one of the days I teach (0+ / 0-)

    Not in vain at all, Steve.  Republishing this to both LGBT Kos Community and Angry Gays, and it will show up in people's streams tomorrow morning.  We have to remember.

    Economic Left/Right: -6.00, Social Libertarian/Authoritarian: -6.31 All it takes is security in your own civil rights to make you complacent.

    by Dave in Northridge on Mon Mar 26, 2012 at 11:12:24 PM PDT

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