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Authors: Martin Duberman

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Some of the activists were privileged white men who'd grown up in the more permissive post-Stonewall climate and felt entitled not only to their sexuality but to all else. Passivity and helplessness weren't part of their makeup or vocabulary. Instead of collapsing, they became angry and resistant when confronted by obstacles. They formed buyers clubs to import promising drugs from abroad, they marched at home against drug companies that kept their prices high, and they pressured the Food and Drug Administration to release AZT before completing the usual three-phase efficacy trials (until 1991, it remained the only FDA-approved treatment—and a poor one—for AIDS).

As early as 1988, thousands of ACT-UP demonstrators from across the country gathered at FDA headquarters in Rockville, Maryland, where their representatives met with agency officials and, remarkably, succeeded in getting the FDA's drug approval process foreshortened. ACT-UP had confronted the federal government's indifference head-on and, through persistent protest had made notable dents in its defensive armor. The ACT-UP confrontations also produced considerable media coverage, and the images many Americans saw on television or in their newspapers contradicted the long-standing stereotypes of frightened sissies and their roughneck sisters. By 1990, there were fifty openly gay elected officials around the country (compared with half a dozen in 1980), and the Human Rights Campaign Fund, a gay lobbying group, ranked twenty-fifth on the list of the country's most powerful fund-raisers. In 1987, only 33 percent of adults believed that homosexual relations between consenting adults should be legal. By 1989, a Gallup poll revealed that the figure had jumped to 47 percent.

There were several downsides to this seeming success story. Many gay people, especially minorities, lacked health insurance to pay for the emergent drug therapies, and lacked, too, a place at the table with government officials that ACT-UP's all-white, all-male Treatment and Data Committee had gradually won. The members of that committee, having increasingly mastered the arcana of current viral science, had become insiders, and were sharply accused by other members of the gay community with advocating primarily for people like themselves; antagonism and fractiousness became so intense by 1992 that the Data Committee broke away entirely from ACT-UP and set up as the Treatment Action Group (TAG). In the meantime, the death toll from AIDS continued its relentless rise, even as one briefly touted medication after another—AL-721, dextran sulfate, Compound Q, DDI, AZT—failed to live up to its initial promise.

On other fronts as well, matters had pretty much stalemated. Draconian sodomy laws still remained on the books in twenty-four states, and the legislatures of only two states—Wisconsin and Massachusetts—had passed laws barring discrimination against gay
people (and only seven U.S. cities had as yet put “domestic partnership,” which granted gay people some of the same rights as married couples, on the books). At the same time, violence against gays and lesbians had become an increasingly popular after-hours sport: in 1990, gay people were seven times more likely to become victims of violent assault than other Americans. It was only with the brutal murder of Matthew Shepard in 1998 that the American Psychoanalytic Association would hold its very first forum on homophobia (there had been countless ones through the years on the “causes” and “cures” of homosexuality).

DIARY

JANUARY 9, 1990:

Put in my usual Tuesday from two to six answering the phones at PWA (People with AIDS Coalition). Dennis was back after a bout with meningitis, back with full-throated campy hilarity, insisting he's just waiting for his welfare check before retiring to Atlanta—“the only place you can get a good haircut.” What great spirit they all have. . . . It was the same when I visited John in the hospital on Saturday. There he is with lymphoma and an untreated “blood clot on the brain”—smiling and planning away. Vito [Russo], too, is a bundle of positive energy, talking about “feeling a little better every day.” Is this merely denial? I don't think so.

MARCH 30:

At the end of the “Whose History?” panel last night at the New York Historical Society (NYHS), a young man with a large ACT-UP button on his lapel came up to me and said he wanted me to know how I ended up (belatedly) on the panel: “When I got the NYHS mailing,” he said, “and saw that gay/lesbian history had been omitted, I wrote in protest to the director of public programs.” She wrote back that NYHS simply couldn't afford another fee (a big $250). To which he responded, “That simply isn't good enough.
One way or the other we
will
be
represented at that event
” The director got the message—and out went the call to me.

[As I later learned, the “young man” was in fact forty-five and his name was Bob Rafsky. He'd been a public relations executive until 1989, when he quit to devote his time entirely to ACT-UP, becoming its media coordinator in New York. Three years after the NYHS event, Rafsky died of AIDS.]

JULY 24:

At PWA today we stuffed envelopes with a grim letter describing the organization's desperate financial situation. . . . Meantime, the gloom thickens on other counts, too: Vito is in the hospital getting chemo; John felt so bad he had to leave PWA today and go home to bed; and Ken [Dawson], who was here for dinner last night, looked drawn and ill, and spoke in a low, energy-less voice light-years from his vibrant self—though he bravely stayed the full evening.

NOVEMBER 7:

Vito died this morning. With no hope of recovery, and with assorted medical interventions of the last two weeks doing little more than heightening his suffering, I suppose it's a blessing. . . . Getting to know him better than ever before over these past four months [I was part of his “team”], I came to admire his resilient will, the resolutely positive way he faced every crisis. Yesterday, when I entered his hospital room, he was shivering under a pile of blankets, yet insisting to the doctor that he felt decidedly improved. . . .

DECEMBER 21:

Vito's memorial yesterday upset me more than I anticipated. Some of it was the poignancy of the large turnout, the hugging and kissing, the sense of a genuine community, the unexpected reunions. Some of it was Vito's own omnipresence on film clips and posters—the vitality of his image in such sad contrast to the purpose of the day. Some of it was the bravery
of so many: Ken [Dawson], Damien Martin, etc.—themselves weakened and endangered, in attending what must have felt, devastatingly, like a rehearsal for their own services.

OCTOBER 10, 1991:

We celebrated Ken's 45th birthday last night in his hospital room. Jed [Mattes, the literary agent] brought a cake, Eli and I party favors, and seven to eight people lifted their seltzer water. As Ken was about to blow out the candles, Jed said, “We're all wishing just what you are.” We threw Silly Putty on the walls and ceilings, laughed at the hospital food, admired the pink amaryllis, and had something that actually approximated a good time. Ken's spirits
are
good. He reports that all of his tests have improved and that he hopes to be home by next week. What does he allow himself to know—that is, consistently? Does he hold out real hope of recovery? If terrors
are
gnawing at his innards, his smiling face belies it. This is more than WASP training, more even than a saintly disposition. . . . He had a tough battle with depression, but now jokes about naming each of his remaining dozen T-cells “after a strong woman friend.” And the homophobes dare tell us we have a “character disorder”! . . . Ken started to tell us about the visit of a Boston friend who's raising a child, and couldn't hold back the tears—strangulated words about being glad that life goes on. . . . He's lost control over his sphincter. Plus a lung has collapsed. Yet on he struggles. . . .

NOVEMBER 13:

Ken's suffering goes on unabated . . . [He's] back in the hospital, lung again collapsed. They were due to operate this morning at 7:00
A.M.
, but now (2:00
P.M.
) he still hasn't gone up—no explanation offered. The routine brutality of our medical system is appalling; and Ken is a middle-class white man!

NOVEMBER 14:

Ken is in agony. They had to take out more of his lung than hoped; apparently the pneumonia has severely damaged it. He
just lies there, lips parched, each cough a knife through his body. . . . A little tea and a partial massage was all I could offer; makes me feel inadequate, awkward; such a dear man, so little anyone can do. . . .

MARCH 17, 1992:

Ken is drifting further away. At the hospital yesterday we ran into his doctor and got a full report. PML [progressive multifocal leukoencephalopathy] has been definitely diagnosed in the brain, which accounts for the in-and-out-again lucidity. Even when lucid, he now responds tersely. . . . He's showing remarkable tenacity in staying alive. . . . [Ken died on April 10].

JUNE 5:

Ken's memorial service yesterday had a powerful effect on me. . . . Several speakers found just the right loving words and phrases “decent, dignified, cautious, gentle, lonely” that encapsulate the man. John D'Emilio was especially effective, though everyone did well. What Ken stood for in the movement, beyond anyone else, was the insistence that we stop trashing each other and look for the
good
within our fellow activists. That is what “decent” means, and Ken was supremely decent—despite what Torie [Osborn] smartly called “the curmudgeon within.”

The effect of AIDS on public opinion had by then become a double-edged sword: heightened fear of dreaded gay “carriers” counterbalanced by increased sympathy for their suffering. President Clinton's new administration in 1992 exemplified the contradiction: when his initial impulse to lift the ban on gays and lesbians serving openly in the military met with a barrage of opposition, he scurried for cover, settling with relief on a “compromise” solution of “Don't Ask, Don't Tell” that all at once fully exploited the military service of gay people while pretending they didn't exist as human beings.

At the core of homophobia, it has always seemed to me, lies the central fear of “differentness.” Why the full, splendid spectrum of humanity should inspire terror in some people rather than joyful
wonder is a puzzler. What can be learned from a neighbor whose expressions, habits, and values are a duplicate of one's own? “Nothing!” exults the crowd, “and that's exactly the way we like it. It was hard enough learning the dominant social codes; having finally mastered them, and feeling accepted and comfortable, let us alone!”

Yet the softening of homophobia was real. In a culture with a profoundly contradictory heritage of conformity and permissiveness, the way forward would necessarily be gradual (though only if the demands were for full and instant change; you ask for the whole pie in order to get a portion of it) and would periodically be marked by retreats—yet the fact would remain that nowhere else in the world was there a comparably vibrant and effective gay rights movement. In the 1970s, when the first gay civil rights measures were submitted to public referendum, only 29 percent of the voters reacted favorably; by the early nineties, the percentage had risen to 39 percent—and would continue to climb.

In 1993, a
Newsweek
article wrote us up as “the new power brokers” (a weird exaggeration) and the cover of an issue of
New York
magazine read “The Bold, Brave New World of Gay Women.” Yet the early nineties also saw a 30 percent increase in assaults and hate crimes against gay people. The dragon of homophobia had hardly been slain. The slow increase in respect and acceptance amounted to no more than a fragile inclusion, and the inclusion was pretty much confined to those gay people who looked and behaved like “normal” folks—meaning primarily middle-class white men who put their faith in polite lobbying, eschewed confrontational tactics, and shied away (as the seventies gay movement had not) from left-wing issues relating to racism, sexism, and economic inequality. The April 25,1993, March on Washington, which I took part in, exemplified the turn away from “extremist” ACT-UP zaps; to me it seemed a bland, juiceless event more parade than protest—especially when contrasted with the earlier marches in 1979 and 1987.

By 1996, there were more than a million AIDS cases worldwide, 70 percent of them in Africa, and with still no effective treatment
in sight (at the end of 1995, the FDA released yet another new drug, 3TC, which proved as useless as the preceding ones). At the same time, “compassion fatigue” had set in: donations to AIDS organizations began to decline steadily, paralleled by the sinking sense that the disease would never be brought under control.

And then, seemingly out of nowhere, the FDA also released saquinavir, the first of a whole new category of drugs known as protease inhibitors. Two others rapidly followed: ritonavir and indinavir. It quickly became apparent that—as FDA Commissioner David Aaron Kessler put it, “we now have some big guns in AIDS treatment.” The year 1996 would prove a milestone in the long struggle against AIDS. A milestone—not a miracle. Almost immediately, reports came in of how the new drugs were reducing the amount of HIV in infected individuals, sometimes to the “undetectable” level, even as CD4 cell counts—essential to a healthy immune system—were correspondingly rising.

But what also became quickly apparent was that the new drugs did not work at all for some people, and worked only briefly for others. Besides, the exorbitant cost of the drugs (up to $15,000 for a year's supply) put them out of reach for most people suffering from AIDS. In the United States, drug-assistance programs existed in about half the states—but didn't initially cover protease inhibitors. Additionally, most of the leadership in the hard-hit Latino and black communities had learned to distrust “innovative” white medicine (in part thanks to the notorious Tuskegee Experiment, which had used black sharecroppers as human guinea pigs).

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