By the end of 1985, more than twenty thousand cases of AIDS had been reported in the United States—with a startling 50 percent of them African American. By then, the scientific community had pretty much unified around the theory—despite some stubborn dissenters who persist to the present day—that HIV causes AIDS. Until then, many in the black community, gay and straight, had dealt with the disproportionate numbers of African Americans affected by telling themselves that AIDS was a white or IV drug user disease and that only black men who slept with white men became infected; some even insisted, with the Tuskegee experiment in mind, that AIDS was a deliberate plot by the government to decimate the black community.9
By the mideighties such views had subsided, replaced by an awareness among black gay men and lesbians that they had to rely primarily on their own organizations to provide services to those afflicted and preventative information to the community in general. GMHC was doing a heroic job—but mostly for whites. Its brochures contained no black images, which meant that people of color had difficulty identifying with its message. That realization led to the formation in 1986 of, among other groups, the Minority Task Force on AIDS (MTFA), which promptly issued its own brochure, AIDS in the Black Community.
Mike Callen and some other PWAs in New York City saw GMHC as essentially parental in its attitudes—we know what is best for you and will provide it—and they had decided to take matters into their own hands. In April 1985, Mike and eight others founded the People with AIDS Coalition (PWAC), declaring in its by-laws that “people with AIDS are the experts on the subject of the epidemic.” (Mike later came to regret the implied dismissal of scientific and medical expertise.) To that end, the group had started a monthly newsletter, Newsline, with Mike Callen as editor and Jane Rosett as co-editor; from an original print run of two hundred, it had developed a national readership. Under Mike’s editorship, the contents came to include everything from mainstream medical findings to the dangers (for PWAs) of eating raw oysters. By 1987, the print run had reached fourteen thousand.10
PWAC—all but ignored in the standard histories of the AIDS epidemic—came along at a point in time when spirits in the gay community had sunk to a low ebb. In the summer of 1985, the American Hospital of Paris formally announced that Rock Hudson, a patient there, had been diagnosed with AIDS. President Reagan—who had yet to utter his first public word about the epidemic—put in a call to his old acting friend offering encouragement. But instead of Hudson’s illness (he died a few months later) leading to more aggressive federal action against the disease, what followed was a frightening spate of invective against gay people and a host of brutal suggestions for spreading further terror among them.
The Reverend Jerry Falwell insisted that the time had come to institute a quarantine of gay people as “a threat to public safety.” No fewer than twenty states in the mideighties mulled over propositions for the kind of concentration camps inflicted on Japanese Americans during World War II, and Congressman William Dannemeyer offered a resolution to that effect on the floor of the House. The well-known psychologist Helen Singer Kaplan published a letter in the New York Times in which she expressed the view held by many that gay people had the obligation to the general population to submit to blood tests for HIV (the ELISA test was used for preliminary screening, the Western Blot, for confirmation—but both tended to produce a disturbing number of false-positives). Since no viable treatment for AIDS was then available, the knowledge of one’s status could for some have a debilitating psychological effect, including suicide. “So what?” seems to have been the reaction of Singer and others: if no benefit followed for gay people themselves, knowing who was HIV-positive would facilitate the roundup for quarantine. As I wrote at the time in my diary, Singer and those who shared her views showed “no awareness of the moral hypocrisy inherent in treating gay people like scum for generations and then demanding that they behave like saints.”11
During this same time period, the New York Post ran a series of lurid, inflammatory articles purportedly about gay life; in one, the Post reported that nurses in hospitals were having trouble policing AIDS patients who kept insisting on having sex with each other—though no such instance has ever come to light. At roughly the same time, New York Governor Mario Cuomo ordered the state’s health department to study whether all bathhouses should be shuttered, while in New York City, Mayor Ed Koch waited until after his reelection and then directly ordered the gay bathhouses—but not straight sex clubs like Plato’s Retreat—closed, pompously declaring “you can’t sell death in this city and get away with it.”
Meanwhile, the Wall Street Journal had raised a “bemused” question about the “curious” lack of public debate over possible quarantine measures—thereby helping to provoke them. On the West Coast, all gay foreigners were being detained—not merely deported. The cry to force gay men to submit to the new blood test for HIV mounted. The vote in Houston went four to one against a gay civil rights bill. Terror and paralysis seemed to be descending in tandem over the gay population. In a poll at the time, 57 percent of Americans surveyed answered yes when asked if gay and lesbian relations should be declared illegal. Then, in 1987, came an incident in Arcadia, Florida, which gave bigotry a whole new dimension. The three HIV-positive hemophiliac young sons of Clifford and Louise Ray were denied the right to attend local public schools. When the courts ordered the schools to admit the boys, the Rays’ house “mysteriously” burned to the ground. The family decided to leave town.
The low point of the deepening demonization came in June 1986 when the Supreme Court in its Bowers v. Hardwick decision upheld a Georgia law outlawing sodomy. The law had been used to arrest Michael Hardwick and another adult man for having consensual sex in the privacy of Hardwick’s bedroom. Homosexuals, in other words, were—unlike other citizens—subject to government intervention and regulation of their private lives. In an eloquent dissent, Justice Harry Blackmun wrote that “depriving individuals of the right to choose for themselves how to conduct their intimate relationships poses a far greater threat to the values most deeply rooted in our nation’s history than tolerance of nonconformity could ever do.” Spontaneous protest demonstrations took place in many major cities, and Mike Callen and some six hundred or so other gay men and lesbians (including Michael Hardwick) protested the Bowers v. Hardwick decision on the steps of the Supreme Court—Mike, along with others, was promptly arrested. The policeman who fingerprinted him wore latex gloves. Mike stared at him in disbelief, and the officer shot back, “Yeah, I’m wearin’ gloves. If you don’t like it, tough shit. You could all have AIDS for all I know.” Mike thought that the real contagion the cop feared was queerness.12
The Bowers decision angered and mobilized the gay community. On the night it was announced, three thousand demonstrators blocked traffic in Greenwich Village, and a small group of activists began to lay plans for what would become a massive March on Washington in 1987. Essex’s poem “The Occupied Territories” gave further voice to the community’s outrage:
You are not to touch other flesh
without a police permit.
You have not privacy—
the State wants to seize your bed
and sleep with you.
The State wants to control
your sexuality, your birth rate,
your passion.
The message is clear;
your penis, your vagina,
your testicles, your womb,
your anus, your orgasm,
these belong to the State.
You are not to touch yourself
or be familiar with ecstasy.
The erogenous zones
are not demilitarized.
A friend of mine, the gay ACLU lawyer Tom Stoddard, told me that the Bowers decision was in his view “our Dred Scott case”—the reference being to the 1857 Supreme Court decision in which blacks were declared to be property without any rights of citizenship. Ironically, Tom had himself recently been a victim of discrimi
nation—and by the New York Civil Liberties Union (NYCLU) no less. I’d been a member of the NYCLU board since 1981 and was present throughout the discussions about whether Tom or a rival candidate should be chosen for the post of executive director. The decisive meeting lasted seven and a half hours, without a food break, which conveys some sense of the tension involved. Twice during the debate—for that’s what it was—board members referred to Tom as “a magical creature,” a third called him “a whiner,” and a fourth thought him “too emotional.” Since Tom wasn’t flighty, and certainly not a “whiner,” I took those references as code words for gay—especially when yet another speaker warned against making an “unsafe” choice. The vote went against Tom and I felt deeply dismayed to have heard so much covert homophobia from members of the NYCLU board, that presumed bastion of decency. Tom agreed with my analysis and was furious about it—he’d expected to win. But he landed nicely on his feet, becoming executive director of Lambda Legal Defense and Education Fund and—before dying of AIDS at age forty-eight in 1997—a major player in the gay civil rights movement.13
The general climate in the mideighties was a gloomy one for many gay people, a decided low point in morale. More and more people in Mike’s circle began to fall ill and die; he felt as if he “was living in London during the blitz, except not everybody seemed to know that bombs were raining down on our heads.” He wrote a song called “Living in Wartime” and said it was “sort of a call to arms.” Back in the fall of 1984, for the first time in two years, he’d again been in the hospital—at St. Clare’s in Manhattan, named, as Mike drily noted, for a Catholic saint, not exactly his choice of benefactors. “My breakfast grew cold outside my room on the floor where it had been left,” he wrote. “As I rang for the nurse, a middle-aged black man, wearing a surgical gown, gloves and a mask, skittered nervously across my room (keeping close to the far wall). He flipped a switch which turned on the rental TV and fled.”
Mike recovered well, but then in 1986 he had to be hospitalized on three separate occasions for pneumonia, with attendant fevers and weight loss. “AIDS is about bed pans and respirators,” he wrote. “It’s about loss of control—control of one’s bowels and bladder, one’s arms or legs, one’s life. Sometimes the loss is sudden; sometimes tortuously gradual. It’s about the anticipation of pain as well as actual pain itself. . . . It is horror.” Five years in, he thought of himself as a long-term survivor, but one day in the hospital he turned to his lover Richard Dworkin and said something about it maybe being time to put down some of those songs that had been going through his head and that he’d been threatening to record. Dworkin was delighted with the idea and suggested they make an album. One side would be more “produced”—twenty-four tracks, overdubs, multiple musicians, several takes; the other side would be “live to two track,” like the live cabaret performances Mike used to do, “quieter, sadder, more contemplative,” Mike at the piano singing, and no editing—though they could do several takes and choose the best one.
After Mike’s release from the hospital, the idea of a record stayed with them. But so did AIDS. He soon found himself flying out to Las Vegas to give a talk to the American Public Health Association. He told them that “AIDS is the moment to moment management of uncertainty. It’s a roller coaster ride without a seat belt. Once this ride begins, there is never a moment when the rush of events that swirl around you stops long enough for you to get your bearings.” Yet he did manage to get his bearings—managed it over and over again.
When feeling well, he put much of his energy into expanding PWAC’s offerings, motivated above all by “a desire to put a human face on AIDS.” He had the strongly held faith—not religious in origin, yet perhaps owing something to midwestern optimism—that if the general population could be shown that “AIDS was happening to real people, not faceless ‘risk groups’ . . . an all-out war against this disease” would be mounted.
One of Mike’s guiding principles was “prepare for the worst and then hope for the best. . . . Decide how and under what circumstances you want to die. . . . Then, forget about it. Turn your attention to the formidable task of staying alive and living life to its fullest. Be hopeful and optimistic—even cheerful. Surround yourselves with others who support your hope.” And so PWAC began to sponsor potluck dinners, a “Laughter Lab” (Saturday night comedy films), support groups (for women with AIDS; for mothers of PWAs, etc.), teas for singles, even a weekly class in how to apply makeup to cover KS lesions.14
As editor of Newsline (as well as president of PWAC), Mike opened its pages to all sorts of contributors, including “inspiring” stories and strategies from long-term survivors of AIDS (then defined as more than three years, which meant only one patient in ten; in 1987 only one in thirty-three stayed alive five years or more) and advocates of a wide variety of theories about the disease’s origins, including such farfetched ones as African swine flu. “My ruthless commitment to seeking out diversity of opinion,” Mike wrote, “meant that with these fingers I typed things that made my skin crawl.”
Sonnabend had initially dismissed the view that HIV “caused” AIDS. He told one TV interviewer that the claim was “absurd,” another that “I don’t believe there is any such thing . . . as a novel agent,” and yet a third, less certainly, that the HIV theory was “a conjecture, a hypothesis, not an established fact.” He soon modified somewhat his early position, but both he and Mike essentially stuck with Sonnabend’s earlier multifactorial explanation. “I still believe,” Mike wrote,
that repeated infection by common sexually transmitted diseases that had reached epidemic levels is a more plausible explanation [than simple onetime exposure to HIV] for the epidemic. . . . There is, of course, a lot of circumstantial evidence implicating HIV in the etiology of AIDS. But it is by no means conclusive. . . . One important challenge to the assertion that HIV could explain AIDS that has never been answered is this: Instead of being the cause of AIDS, why isn’t it just as likely that HIV is merely another opportunistic infection that has been reactivated from a latent state after whatever is truly causing AIDS has left out the possibility that HIV antibody . . . is the effect, rather than the cause, of immune deficiency.
In Mike’s view, regardless of which theory you chose to believe, exposure to sperm through receptive anal sex with multiple partners was central to the present health crisis: “If you believe the single virus theory, promiscuity is how this unidentified, killer bug is being ‘spread.’ ” For a time, Mike’s own immunosuppression began slowly to reverse itself, and he credited the improvement to having “stopped promiscuity completely and . . . allow[ed] my body to recover from the abuse it has suffered.” What still remained unanswered, Mike felt, was precisely how HIV caused depletion of the critical CD4 cells.
Mike continued to work closely with Sonnabend, though in Mike’s view they “had a very tortured relationship.” They had a doctor-patient relationship, a personal friendship, and a political alliance. Mike had a subtle and deep intelligence—and a writing style of absolute clarity—yet he considered Sonnabend “the most brilliant person I’ve ever met. He is completely eccentric. He thrives on chaos.” And though basically tender and caring, he could be prickly, irritable, and uncommunicative. But Mike never doubted that Sonnabend was the reason he was still alive.
Sean Strub—the founder and publisher of POZ, an important source of information about AIDS research and treatment—was also a patient of Sonnabend’s and also credits him with keeping him alive. Recently, Strub conducted a series of interviews with Sonnabend at his home in England, where he’s retired. Throughout the long sessions, Sonnabend made it clear that he’s continued, with some adjustments, to hold to the theory he’d outlined in the early 1980s. Emphasizing that infection and disease are not the same thing, Sonnabend did, and does, believe that every disease (as opposed to infection) is multifactorial in nature in the sense that one passes into the other depending on a variety of factors—the way the infection enters the body, the immune response
of the host, varying genetic susceptibilities, the presence of other diseases in the host, nutritional factors, psychological states of mind, and so on. In Sonnabend’s view, the course of all infectious diseases is in that sense dependent on a wide variety of factors.
Many questions about the role of HIV remained unanswered. Some people were getting sick in the apparent absence of any trace of HIV. Ironically, Mike himself was, as he put it, “an HIV factory. One of the cell lines for HIV antibody tests comes from me. . . . I’m notorious among researchers in the city. Whenever somebody needs to culture active, live virus, they come to me.” Duesberg claimed that there were four thousand AIDS cases in which HIV was absent, but others found only 299 HIV-seronegative individuals with AIDS, and even that figure was subsequently lowered to 168. Other questions—perhaps inevitable in the early stages of research for any disease—that the skeptics raised included: Why isn’t HIV found in many of the T cells it purportedly kills? Why do some HIV-positive people suddenly test negative—without any intervening treatment? Why do so many spouses of HIV-positive people remain negative, even when safe-sex techniques aren’t used? Does the “AIDS test” measure antibodies or the virus itself—and can one test positive for antibodies without having the virus?
It was a sign of Mike’s sophistication that he wondered what reasons, other than scientific ones, led someone to prefer one explanation for AIDS to another. What might be the political or psychological advantages to the choice made? He decided that, in his own case, the “killer virus” theory was too “disempowering.” He found the notion that those with HIV were “ ‘timebombs’—that all that matters is having or not having HIV—that once one is infected, nothing one does matters much since HIV is a conveyor belt leading inevitably to sickness and death”—too frightening for someone like himself, “a control queen.” He was also a temperamental skeptic with a knee-jerk distrust for “experts” and “authority”—in contrast, he felt, to the many “religious” gay men willing to suspend reason and logic and genuflect before “revealed truth.” Further, Mike believed that most gay people preferred the HIV theory because it held a virus rather than particular sexual practices responsible for the transmission of AIDS. He recognized, though, that putting the blame on a multiplicity of sexually transmitted diseases played into the hands of all the right-wing crazies who held the behavior of gay men itself responsible for their plight—and thus deserving of neither compassion nor adequate research funding.
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