Hold Tight Gently

by Duberman, Martin

  Mike Callen, himself a risk taker, kept saying over and over again in the mid- to late eighties (including in a 1986 speech to the American Public Health Association) that if he could challenge one assumption about AIDS, it would be that it’s “an automatic death sentence—that AIDS has a 100 percent mortality rate. There are a handful of us—estimated variously at ten to eighteen percent—who happen to be quite alive more than three years after our diagnoses and who intend to be alive for many more years.” But Mike’s percentages might have been somewhat inflated, and besides, three years of survival was hardly the equivalent of a normal life span, never mind the quality of life involved. Even for those who’d managed to get through three years, as one researcher would later conclude, “there might be nothing ‘special’ about long-term survivors . . . [it] could be pure luck.”

  Mike himself included “luck” whenever asked for an explanation—that is, “Luck, classic Coke, and the love of a good man.” Richard Dworkin hated it when Mike cited him as crucial to his survival because that implied that if he ever left Mike, he’d die; or, if Mike died, that Richard hadn’t loved him enough. In the spring of 1988, Mike wrote a piece for the Village Voice in which he insisted that “the best-kept secret of the epidemic” was that not everyone died (by then it had been six and a half years since Sonnabend’s original diagnosis). Mike argued that “there are very few infectious agents with a mortality rate of 100 percent for the simple reason that, from an evolutionary standpoint, any disease that killed all its hosts would die out itself.” A New England Journal of Medicine study concluded that the rates of survival varied with different risk groups. The worst prognosis was for female IV drug users, most of whom were black and Hispanic.

  Mike himself did some two dozen interviews with long-term survivors and concluded that what they had in common was that they were all fighters; passionately committed to living, they worked hard to stay alive. And they were all involved in the politics of AIDS—an involvement, Mike felt, that “can be an antidote to the self-obsession that comes with AIDS.” One finding that surprised him in his study of long-term survivors was that a majority of them had experienced a rekindling of religious sentiment. He explained it as part of the will to live, “when rational systems offer no hope, we turn to those systems that do. In our culture that means religious systems that speak of life after death” and of “a caring, paternal god who will take care of you.” As for himself, he wrote that he’d filed away a signed, notarized document indicating “that any request I might make for religious assistance is to be taken as prima facie evidence of dementia.”

  Mike also argued that the definition of “luck” needed to include one’s race, income level, and access to health care. As the number of people infected continued to rise throughout the 1980s, it became ever more clear that minority groups, particularly blacks, Latinos, and IV drug users, were significantly underrepresented in federally sponsored clinical drug trials—despite the fact that at least some gay activists had been calling more and more attention to the social demographics of access. In 1989, for example, blacks and Latinos accounted for 42 percent of adult U.S. AIDS cases, yet were only 20 percent of the participants in current research trials. The same disproportion was true of women and children of all races.21

  Late in 1987, Mike’s prominence had led to his being appointed to the newly formed New York State AIDS Advisory Council, and he used his new position to make a special effort to arouse sympathy and treatment for IV drug users, whom many viewed as willfully self-destructive. Writing directly to Dr. David Axelrod, New York State’s commissioner of health, Mike expressed his concern that the state was “completely unprepared for dealing with the complex problem of AIDS and IV drug use. . . . If sympathy cannot be generated for the IV users themselves, then sympathy must be extended to the sex partners and children of IV users, many of whom are at risk for AIDS.” Given the disproportionate number of people of color among IV drug users, Mike put the blame for government indifference squarely on racism. He denounced as “nonsense” the argument many officials used to reject the call for free, clean needles on the grounds that such a program would encourage or suggest approval of illegal IV drug use.

  Along with four others, Mike even traveled to Albany to plead directly with Governor Mario Cuomo for a clean needle exchange program. Cuomo opposed the idea, citing the same tired argument about not wanting to send a message that drug abuse was acceptable. When Mike said something about Cardinal O’Connor’s “mean-spirited” attitude toward people with AIDS, Cuomo responded, “I think you misread him. . . . In terms of helping people and reaching out to them, I think he has been extraordinarily generous.” Realizing that Cuomo was a Catholic, Mike decided not to respond to what he viewed as a gross misreading of the cardinal’s character.

  A year on the New York State AIDS Advisory Council was enough to convince Mike that he could better use his energy elsewhere. He thought individual members of the council, like Episcopalian bishop Paul Moore, worked hard—usually behind the scenes—to get more accomplished, but as Mike said in his letter of resignation, “We’ve certainly said many of the right things; but I’m not sure we can take much credit for delivering.” New York State, after all, had the largest concentration of people with AIDS in the United States, yet had dragged its feet in funding AIDS education, prevention, and clinical trials. Had it not, Mike felt, “we might now have treatments that would keep me and others like me alive.” The root problem, he concluded, was that neither Commissioner Axelrod nor Governor Cuomo had ever taken the council’s recommendations seriously; AIDS policy was “formulated elsewhere and where it comports with what the council may decide, good; but where it does not, too bad.”

  While most white gay men were clamoring for admission to experimental drug trials, some African Americans were reluctant to enter them. Thanks to the notorious Tuskegee experiment (1932–72), distrust of government was deeply entrenched—to say nothing of its prior historical support or indifference, on both the federal and state levels, to slavery and its successor, segregation. Just as some white gays feared quarantine, some blacks feared that AIDS was a deliberate genocidal plot—“just as the introduction of heroin had been”—to decimate minority communities.

  But as the mortality figures for AIDS mounted, black gays and lesbians increasingly formed their own organizations to deal with the heavy toll on their communities. The CDC reported that by 1987 the incidence of HIV in African Americans was twice that in whites. Across the country, but particularly on the two coasts, a number of new groups started to emerge—the Black Coalition on AIDS in San Francisco, the Kupona Network in Chicago, GMAD (Gay Men of African Descent) in New York City, Black Gay Men United in Oakland, Unity and ADODI in Philadelphia, the multiple chapters of the Minority Task Force on AIDS, the National Coalition of Black Lesbian and Gays, and so forth.

  GMAD in New York stood out for the rapid growth in its ranks. Founded in the summer of 1986, it initially met in private homes, but as membership swelled the group began meeting in the LGBT Center on Thirteenth Street in Manhattan. It remained a volunteer organization that provided both social space and public advocacy. By the late 1980s GMAD had developed into a structured organization, replete with officers and a board of directors, centered on providing information and consciousness raising to its members. It did not, unlike the Community Research Initiative, enter directly into medical research and trials.

  In some cases, white gay activists lent information and support—more often, it should be said, than did traditional heterosexual black leaders and organizations. As late as 1988, for example, the Reverend Calvin Butts, executive minister of Abyssinian Baptist Church—the most prestigious church in Harlem—publicly denounced drugs and homosexuality as “against the will of God.” On the other hand, Manhattan Borough President (and later Mayor) David Dinkins fought to get more money allotted from the city budget for AIDS programs.22

  In Washington, D.C., a good deal less activity was apparent. A group c
alled Best Friends was formed in 1986 to help provide social services to PWAs; Howard University sponsored a forum on “AIDS and the Black Population”; and the organization Spectrum came into existence to spread information about AIDS to the black community. By 1987, the Whitman-Walker clinic had considerably expanded its operations, but the Reagan administration—though the president had finally managed to say the word “AIDS” out loud in 1986, five full years after the epidemic began—kept budgeting only modest sums for research (which Congress several times raised, as did Mayor Marion Barry for D.C.). Yet Chief of Police Maurice T. Turner was unashamed to say publicly that he wouldn’t want to be in a room with a person who had AIDS, and D.C. police continued to wear surgical masks and yellow gloves when dealing with AIDS patients—leading to the creative ACT UP chant: “Your gloves don’t match your shoes / they’ll see it on the news!”

  Essex was entirely aware, as he put it, that “a mysterious agent was invading our bodies, hiding traps and explosions in our sweet cum and virile blood.” And the agent was continuing to spread. “A generation,” Essex wrote, “passes before my worn out, grieving eyes. An outlaw community is being decimated without remorse. The scythe swings back and forth, back and forth, random, wild, unpredictable.” He himself still felt relatively well, but he did confide to Wayson Jones that he’d experienced some of the symptoms—fevers and night sweats—typically associated with the onset of AIDS. Wayson felt uneasy about how committed Essex was to using safe-sex practices; Essex had told him about “a night of fucking and, almost bragging, had said, ‘and we didn’t have no safe sex!’ ”

  The black artistic community had continued its vibrant expansion at venues like d.c. space and the Painted Bride Art Center. The latter awarded a two-week New Works Residency grant from July 28 to August 9, 1987, to Essex, Michelle and Wayson, and the product was Voicescapes: An Urban Mouthpiece, staged for one night and reviewed favorably in the prestigious High Performance magazine. In essence, the piece was an extension of the performance style that they’d previously worked on in Cinque and Murder on Glass, continuing the exploration of oral traditions, especially the techniques of call-and-response and recitation in unison. Essex described Voicescapes as “choral arrangements . . . chants and music were employed to express new meanings from the poetry.” Or as Chris Prince, one member of the cast of seven, put it, “a layering of the spoken word, the same way you would layer singing voices. . . . One would speak in a regular speaking voice, another person would talk in a higher range, and a third in a lower one—and you would get this choral effect.” (Voicescapes II, with just Essex, Wayson, and Michelle, followed later.) The evening was a success, and in the mayor’s prestigious Arts Awards of that year, Essex was nominated in the category of Outstanding Emerging Artist. He then began work on what he hoped would be his third collection of poetry, Soft Targets, and he and Wayson continued a collaboration that they hoped would eventuate in the release of their first cassette recording.23

  They were very conscious, as the number of experimental events accelerated, that the black gay community was involved in a wave of creativity, a much-talked-about “Second Harlem Renaissance.” D.C. “was just bubbling,” as Chris Prince put it, “politically, artistically, and socially. . . . [It was] an amazing, amazing time in Washington.” Following Voicescapes, they did a piece called Dear Motherfuckin’ Dreams at the Kitchen, the well-known experimental venue in New York City. No director was used. When needed, Essex or Michelle came up with the blocking, which Chris Prince, at least, felt was “one of our flaws,” since an “outside” perspective might have been helpful at certain points and could have served as a “filter.”

  But by the late eighties, an almost imperceptible lessening in energy could be detected. AIDS had begun to make significant inroads in the black gay artistic community, to ensnare a growing number of the creative spirits that Essex counted among his friends. The Washington Post published an appallingly callous article entitled “Black Gays Evade Reality”—appalling because it seemed ignorant of the horrors that the black gay community had been regularly enduring. Essex wrote a furious rebuttal. The Post article had suggested that afflicted blacks were relying medically and politically on the “charity” of the white gay community—meaning primarily the Whitman-Walker clinic. Essex knew there was some truth to that, but in fact he and his friends had participated in fund-raisers and performances to raise money for AIDS-related causes in the Washington area and had gathered artists together regardless of their sexual identity to benefit a homeless shelter.24

  Besides, the Post article declared that “AIDS messages developed by white gays for white gays have not worked for the black gay community” because of “vast differences in language and culture.” In his response, Essex sharply asked, “We are speaking of English, aren’t we? I am writing this letter in English. Are we to believe that black gay men speak another language? If so, what is that language? Does it have a set of symbols that can be learned for the sake of writing more effective AIDS alerts or newspaper columns?”

  Essex had himself claimed on occasion that “a black gay identity is separate from a gay identity,” but he also hoped “to meld those identities into one being.” The irreducible element in his anger—at the Post in particular, at the white gay world in general—was the knowledge that “I can go anywhere in the country and I’m going to be dealt with as a black man—whether I’m flaunting my faggotry or being discreet. The first thing they see is a black male, and that is a constant and ongoing confrontation.” The term “gay” had for him “always implied white and middle-class,” and he applied it to himself simply because it was “expedient . . . it is what popular culture uses to identify a homosexual.” But he did wish that there was “another word that would more aptly affirm not only our sexual, but our racial identity and heritage. Maybe it is a word that we have to put into being.” He didn’t feel that his sexuality was “so big a thing that it’s going to overwhelm my desire to see us [blacks] live and survive.”

  Long-standing white detachment from black suffering provided the subsoil of Essex’s anger, but it had probably been further aggravated by the recent news that Joe Beam had fallen seriously ill. The year 1987 had started out triumphantly for Joe. The D.C. gay newspaper the Washington Blade listed In The Life as the number one selling gay male book in the country, and he got a host of invitations to speak, including a short tour of California that included San Francisco, Los Angeles, and San Diego. He’d also gotten a prized letter from Audre Lorde telling him that the book “gives me a lot, the pieces themselves, and a lot of hope & satisfaction, too, that it exists. The ending of one kind of isolation. I think it represents an incredible piece of work.” As well, Joe began talks with the gay British filmmaker Isaac Julien about collaborating on a new work. On top of all that, Joe continued as editor of Black/Out, and the journal’s sponsoring organization, the National Coalition of Black Lesbians and Gays, got yet another $10,000 grant.25

  So far as is known, Joe hadn’t told anyone that he was HIV-positive, not Essex, not even his mother, Dorothy. He’d fallen ill several times with respiratory and intestinal ailments during 1987 and 1988 but hadn’t put a public name on his assorted afflictions. When he died late in 1988, three days before his thirty-fourth birthday, the obituary in the Philadelphia Inquirer read—as did so many AIDS obits then—that “he is believed to have died of natural causes.” Essex was quoted in the obit as saying that “he has to be remembered for helping to lead us out of our silence—and by us, I mean black gay men, who heretofore had not been speaking out through literature.”26

  Essex put his deepest feelings about Joe into his poetry. One of those poems has never been published:

  There should have been

  More letters between us.

  In later years it will be difficult to ascertain

  The full meaning of our relations.

  Most of us will not be here

  To bear witness.

  There should have beenr />
  more letters hastily written

  or carefully typed,

  long-winded scripts

  or short, cryptic messages.

  Volumes of letters

  should have gathered

  over time, but we leave

  hastily scrawled postcards,

  outrageous, long-distance

  phone bills,

  and in rare instances

  evidence that some of us

  were more than brothers,

  we were intimate,

  loyal, companions.27

  5

  The Toll Mounts

  The number one killer of people with AIDS by the mid- to late eighties was Pneumocystis pneumonia (PCP). As far back as 1977—before the AIDS epidemic began—Dr. Walter Hughes of Tennessee and his colleagues had conducted a placebo, double-blind study that definitively proved the effectiveness of Bactrim in preventing PCP, and they’d published their findings in the New England Journal of Medicine. Joe Sonnabend knew about the Hughes article, had corresponded with him, and shortly after Mike’s diagnosis in the summer of 1982 had put him on two double-strength Bactrim tablets a day. After AIDS proliferated, Dr. Michael Gottlieb of Los Angeles and his colleagues, in a 1984 article in Lancet, strongly recommended long-term prophylaxis for PCP, but their recommendation had been ignored.1

  During the 1987 International Conference on AIDS in D.C., Mike and several other activists met with Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID, a subsidiary of the National Institutes of Health) and ultimately the head of the AIDS Clinical Trials Group (ACTG)—the AIDS czar in all but name. They tried to persuade Fauci to issue federal guidelines recommending Bactrim or, since some people couldn’t tolerate the drug, the lesser alternative, aerosol pentamidine, as preventatives against PCP. Fauci rejected both on the grounds that no controlled studies of their efficacy and safety existed. Yet a year later, under oath before Congress, Fauci said, “If I were an individual patient [with AIDS], I would probably take aerosolized pentamidine if I already had had a bout of pneumocystis. In fact, I might try, even before then, taking prophylactic Bactrim. If I were unable to tolerate that, I might go to aerosolized pentamidine . . . be it available in the street or what have you.” Fauci the fantasy patient, in other words, would illegally buy a drug on the street that Fauci the head of NIAID refused to otherwise make available. In other words: “Do what I do, not what I say.” Some went further: governmental intransigence on approving Bactrim, they claimed, very nearly approached criminal neglect.