With this special report, we are pleased to introduce POZ Podium, a highly opinionated forum for leaders in AIDS prevention, treatment, advocacy and activism. Periodically, POZ will ask those shaping policies, trends and theories to share their most critical thinking. Our hope? To ignite a conversation around the hottest topics connected to HIV/AIDS.
To illustrate his passionate defense of unprotected sex, or barebacking, HIV-positive activist Tony Valenzuela posed naked on horseback for the cover of POZ’s February 1999 issue and was interviewed for the accompanying story on barebacking (click here to read the piece ). Now, for this POZ Podium, Valenzuela offers a provocative essay exploring what he considers U.S. public health officials’ demonization of gay male sex and how the pathologizing of gay men’s behavior hinders successful AIDS prevention efforts. Valenzuela traces a compelling history—from the mythic hyper-promiscuous “patient zero” of the 1980s, to the fictional meth-addicted sexual compulsive at the center of the bogus 2005 New York City HIV “supervirus” scare, to the recent tabloid headlines that described MRSA staph as a “gay disease”—pointing out how the hysteria and misperceptions around gay sex stigmatize gay men, stereotype them and disenfranchise them from the public health system. In a reporting coup, he interviews the New York supervirus patient—the man whose legendary “superbug” was documented in an article in New York magazine in April 2005 (click here to read the piece). Through their conversations, a radical proposal for rethinking gay prevention efforts emerges.
POZ’s February 1999 issue
Tony Valenzuela’s community work and writing focus on the politics of sex, gay men’s subcultures and an assets-based perspective in health promotion. He is currently writing a book about gay men and sexual risk told through his own personal story and has most recently been published in the LA Weekly, Frontiers, Inside Him and ZYZZYVA.
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| Activist Tony Valenzuela |
In Paris, the same year the “supervirus” story broke, the late gay-rights pioneer and scholar Eric Rofes declared to an audience of international activists, “The pathologizing of gay men’s communities and cultures and spaces is the most powerful challenge we face to promoting gay men’s health.” Three years later, this man’s story lays bare how far too many who work and report on gay health narrowly imagine the sex lives of gay and bisexual men inside a realm of disease and dysfunction.
“This was something that changed my life radically,” the New York man told me in the thoughtful, considered tone that marked our many conversations. “I had to give up my job. I had to stay in bed. I got HIV. Sometimes I feel like I wish I had cancer so I wouldn’t have to deal with the stigma that goes with this.” I would speak to him only by phone at first, each of us on different coasts. He has been careful to keep his identity secret for fear, not ungrounded, that past sex partners or public health vigilantes stoked by the yellow journalism that covered his story would seek him out for retribution. In addition, he has yet to tell his family what he’s been through. For these reasons, I have omitted some details of his life. Because I cannot use his real name, I will call him the New York Patient, a problematic epithet but one relevant still since he is like so many gay and bisexual men today—awash in diagnoses.
Sexually Irresponsible Gay Men?
The New York Patient was terrified and weak when the news of his virus broke on February 11, 2005. In an ominous press conference declaration, Thomas Frieden, MD, commissioner of the New York City Department of Health and Mental Hygiene, announced the discovery of a strain of HIV that was “difficult or impossible to treat” and that “potentially, no one” was immune. At 46 years old, the Cuban-born man believed that he would die and bought a cemetery property in a family plot in Florida. It was an arduous yearlong climb out of precarious health, six months before his viral load fell to undetectable levels or before he could leave a bedridden life to take short, exhausting walks in his Manhattan neighborhood. Having plummeted to a dangerously low 28, his CD4 cells inched upward gradually until November 2006, when they climbed above 200 where they’ve remained since.
The health commissioner’s press conference incited terror of the return to the AIDS-as-death-sentence days of the ’80s and early ’90s so that the anomalous story of one man’s potent infection turned into a universalizing gay morality tale. Activist Larry Kramer called the New York Patient a “total and utter asshole” in the New York Observer then suggested to Gay.com that “one thing is certain: We must make all efforts to de-eroticize anal sex.” Historian Charles Kaiser went further, telling The New York Times, “A person who is HIV positive has no more right to unprotected intercourse than he has the right to put a bullet through another person’s head.” And Michael Weinstein, president of the Los Angeles-based AIDS Healthcare Foundation, told the Advocate that the New York Patient was “indicative of a subculture of self-destruction and carelessness about our health.” These are just a few examples of dozens like them where the crystal meth context of the New York Patient’s infection is incidental to pointed assumptions about gay sex: self-destruction, suicide and murder have been ascribed to sex between men long before meth crowded headlines.
The moral panic that ensued over the New York Patient’s personal sex life was one familiar to those of us who have observed, or participated in, these paroxysms of anger since the mid-1990s, when it became clear among researchers that gay and bisexual men would not, for reasons simple and complex, use a condom every time, even though they use them far more often than heterosexuals. The trail of high-profile, high-drama explanations that have attempted to make sense of continued HIV infections often have more in common with folklore and tabloid journalism than with sound research. For over a decade, activists have engaged in rancorous debates over barebacking, circuit parties, “gift givers” and “bug chasers”, men on the down low, resurgent syphilis and of course, crystal meth, to name a few, all highlighting the complacency at best or depravity at worst of gay men in the age of HIV—and all aired in deliciously lurid detail by a mainstream news media that survives on a steady diet of spectacle. In other words, we had been through this before, over and over again.
The representation of the sexually irresponsible gay man as the driving force behind new HIV infections has been a recurring theme in both mainstream and gay media despite evidence to the contrary. According to the Centers for Disease Control and Prevention (CDC) in 2005, the year the New York Patient learned he had AIDS, rates of HIV infections nationally among Latino men were up to three times higher than among white men. Infection rates among African-American men were up to eight times higher than among white men. No other group in the U.S. is affected by the HIV/AIDS epidemic as severely as black gay men. Although African Americans represent only 13 percent of the U.S. population, they account for 49 percent of new HIV infections and 50 percent of new AIDS diagnoses. In a June 2006 literature review from the American Journal of Public Health, researchers tested a dozen hypotheses as to why this might be among black gay men in particular, ranging from rates of unprotected sex and drug use to awareness of HIV status. What researchers found was a powerful argument contradicting public health’s idée fixe that the epidemic rests on individual bad behavior. Black gay men reported less risky sex on average than white gay men and similar rates of drug use. But black men also got tested for HIV less frequently and were more likely than white gay men to be unaware of their HIV infection. They had irregular access to good health care and higher rates of STDs – all proven risk factors for HIV transmission. Perhaps most importantly, the sexual networks of black gay men tended to be other black men, increasing their chance of HIV infection among a population already challenged by high levels of HIV.
In another notable study, this one from the September 2007 edition of the journal Sexually Transmitted Diseases, researchers at the University of Washington, Seattle, found through two large population-based surveys that gay men had similar rates of unprotected sex as heterosexuals but that the HIV epidemic among gay men in the U.S. remained strong because anal sex is more conducive to the transmission of HIV than vaginal sex. Heterosexuals maintained the same sexual roles (male insertive and female receptive), while gay men often switched roles, giving HIV a greater likelihood for back-and-forth routes of transmission.
What does it mean that the same levels of sexual risk in heterosexuals, in gay men in general, and in black gay men specifically, result in vastly different rates of HIV infections across these groups? Structural dynamics far outweigh individual behavior in determining the American HIV epidemic. And yet the meth “party ’n’ play” guy, the circuit boy, the so-called bug chaser, is almost always nameless, faceless but presumed to be a middle-class gay white urbanite with the skills and knowledge to keep himself HIV negative. If the fear over new infections is what’s ostensibly behind this rapt concern, why is this “reckless” gay man paid so much attention when, by leaps, the brunt of HIV disease, the real number of men infected is above all else determined by a lack of access to health care and by poverty in the United States? HIV continues to be misrecognized as a disease of gay debauchery, which would imply that gay men of color are many times more irresponsible than gay white men, who are many times more irresponsible than heterosexuals: That’s the cloaked assumption when HIV incidences are framed around sexual irresponsibility. When writer Dan Savage proposes that the state come after those who infect others with HIV “out of malice or negligence” so that the state can recoup “drug-support payments—thousands of dollars a year for treatment to keep them alive, comparing drug costs to child support payments—he is unwittingly suggesting another layer of penalty to populations who are disproportionally at the punitive receiving end of the criminal justice system.
Am I saying reckless gay men don’t exist? Of course not, but sexual irresponsibility is not a gays-only disorder. Nonetheless the burden of scrutiny and explanation weighs most heavily on gay men of all races. Arguably most HIV infections are due to negligence, as are the myriad diseases caused by smoking and overeating. We don’t base health care policy on merit. Whatever tiny minority of people exists with a malicious intent to infect others with HIV, it’s a dangerous fallacy to pin the thrust of infections on a willful disregard for health.
I Confess
Before now, those of us following the New York Patient’s story knew only his age (late 40s), his place of residence (New York City), his sexual orientation (gay) and as was widely reported, his transgression (multiple unprotected sex partners while using crystal meth). In light of the virus health officials feared he carried, this limited biographical information imbued his anonymity with the sinister and salacious. While he has been protected by his anonymity, he has also been silent, afraid to breathe life back into a scandal that traumatized him when he was at his weakest.
“There was the possibility that I wouldn’t make it, but now I’m here, getting better. I’m not dying,” he told me. “I’m at peace with my status. Hopefully I can transmit that message to other people.” Since becoming positive, the New York Patient has spent much of his time as a quiet advocate for HIV causes, participating in numerous workshops at Friends In Deed, a crisis center in New York for people with life-threatening illnesses, both for his own personal growth and to help others struggling with their AIDS diagnoses. As a member of the organization’s speakers bureau, he often gives presentations on HIV prevention to New York City high school students where he discloses that he is a gay man that has been diagnosed with AIDS.
“There was an audible ‘Oooohh!’ in the class,” he told me, amused by the students’ reaction at one school in Manhattan. He warned them that drugs and alcohol affect sexual behavior so it was their responsibility to use a condom because some partners won’t disclose their status and 25 percent of people with HIV don’t even know they’re positive. “If someone says he loves you, believe me, nobody loves you enough to go through what I’ve been through.” Then, to his astonishment, the teacher asked the class if the students remembered the story of the “supervirus” from the news a few of years back, not realizing it was he at the center of it. The students indeed remembered the headlines and he was faced with a choice. He took a deep breath and said, “Here I am. That person in the press a couple of years ago, he’s standing in front of you.”
“There was silence, silence, silence,” he told me. “You could hear a fly buzzing by.” But then, a flurry of questions: Do you know who gave it to you? Does your family know? How are you doing now?
When he told me this story I thought about the prolonged silence in the classroom in front of 40 teenagers’ wondering stares. Who did they see in front of them speaking about safe sex whose abject life had been splayed across the news in New York and the world? What did they know of this man other than a past of meth abuse and promiscuity, the gay stereotype in person—now reformed, or so it must have seemed, teaching young people about HIV prevention? Did his presence seem like an act of redemption? Do we sympathize with him the more that we know of his life?
His family left Cuba in 1970 and resettled throughout Latin America. He moved to the U.S. largely to come out of the closet safely, and after spending a few years in New Orleans, in 1989 he moved to New York City, where he worked as a senior account executive in sales for a major corporation. His gayness “is known but not talked about” in his immediate family of five boys, only one of whom knows his HIV status. Most of his relatives now live in Florida, and he has begun to confide in a few who, he says, have been “very supportive.” Though he’s always been close to his mother and father, he hasn’t yet told them he has HIV: His AIDS diagnosis came only nine months after a brother passed away. “I didn’t have the strength to tell my parents at that point,” he told me, “and I still haven’t found the strength.” In light of this isolation from most of his family concerning his HIV, he has felt fortunate to have in New York many longtime friends whom he considers close and dear—a surrogate family during his life’s most difficult challenge.
As I listened to the New York Patient’s story I noted the parallels of his life to my own—both Latino, gay, HIV positive. I have many friends like the New York Patient—gay and immigrant; one foot in American culture, the other in a country left behind; a life of adaptation and struggle, of inimitable self-invention that redefines community and home. I don’t mean to say we’re alike as much as the worlds we inhabit overlap in places that have drawn me to his story, and here’s the most compelling part: Our obscure but considerable common denominator is the strangely intimate experience of withstanding the punishing glare of scandal.
Full disclosure: In 1997, already two years HIV positive, I gave a talk at a national LGBT conference on the volatile politics of sex, where I shared with an audience the significance and pleasure of sex without condoms in the context of its utter taboo. My comments were a pointed critique of HIV prevention, which had in my view, attempted to designate unprotected sex an act easily disposed of when it was anything but among gay men and heterosexuals alike. Breaking from the orthodoxy of “use a condom every time” caused a staggering controversy over which I lost friends, colleagues and community. It placing me at the center of the acrimonious debates on “barebacking” for several years. However naive or foolish or necessary my foray into the implacable terrain of sexual risk, it was a seminal event that helped me to see sexual risk as a category of disgrace unlike any other—a disgrace the New York Patient shares with me.
In poet Brent Armendinger’s remarkable essay (Un)Touchability, on the ethics surrounding HIV disclosure, he writes, “When I confess, my disclosure is offered up to someone who is assumed to be morally superior. When I bear witness, there is a balance of power and vulnerability between us, and that which is personal is also plural.” If bearing witness is to show by one’s existence that something is true, is the New York Patient confessing or bearing witness to the Manhattan high school students, to me in my role as journalist, and to readers of this essay? When it comes to sexual risk and HIV, do we recognize any narrative besides a confession? What choice have we given the New York Patient other than offering an explanation for what we have already framed as his failure? Confession or bearing witness? This is a dilemma he shares with gay men everywhere who are determined a “risk group” by the public health establishment, our sex lives viewed through a risk paradigm set up invariably to fail. The public narrative of gay men’s sex lives is a permanent state of confession. Pathologizing sexual risk among gay men exacts a heavy price, as the astute Australian HIV social science researcher Kane Race points out where gay men are “led to interpret their sexual practice as intentional deviance.” It is paradoxical to expect health from behaviors already predetermined as risk.
Deficits Approach to Gay Health
“If I fault any aspect of our response, it’s not anticipating what a media frenzy this would engender,” said New York City Health Commissioner Dr. Thomas Frieden, to whom I spoke by phone. “With 20-20 hindsight, one can easily say, ‘Well, you should have been able to anticipate that talking about a strain this bad and a guy who had lots of anonymous sex was going to get this kind of media attention.’ We didn’t anticipate that.”
When Frieden told me this, I wondered how he could have neglected to consider the last 10 years of intense media attention over the barebackers, the bug chasers and so on. The supervirus story only added the latest chapter to this established plotline. “There was a sentiment at the time that said we had unintentionally added to the demonization of the gay community as being sexually irresponsible. That certainly wasn’t our intent,” he told me.
It is never the intention of public health departments or HIV community-based organizations or the CDC to demonize, stigmatize or otherwise undermine the trust that gay men ought to have for these institutions. They are, in fact, institutions filled with gays and lesbians. And yet frequently, and at times with astonishing callousness, straight and gay health officials stigmatize gay and bisexual men, thus undermining their trust. We are in an era in the gay community when messages aimed at gay men by our community-based organizations (CBOs) are barely distinguishable from those of public health departments or the CDC, from which the majority of funding funnels downward. As I recently heard it described, CBOs have been colonized by the CDC.
“If you look at the range of interventions that the CDC makes available to health departments and community-based providers,” said George Ayala, director of education at AIDS Project Los Angeles and the former director of the Institute for Gay Men’s Health, “they almost all begin with the assumption that there’s something not right with gay men – there’s a skills deficit, there’s a knowledge gap, there’s something wrong with the way men think about themselves as gay men and as sexual people.” I met with Ayala in Philadelphia during the National LGBT Health Summit, where he was both a speaker and participant. “Gay men have high knowledge of HIV and AIDS. They have information about how to minimize their exposure to HIV. They know how to use condoms. They don’t always want to. The idea that somehow we’re operating at a deficit is really problematic.”
This deficit approach to gay men’s health is pervasive and compounded by public health’s resistance to acknowledge gay men’s sex practices in ways most relevant to their lives. Three years ago Ayala received a CDC grant to collaborate with Gay Men’s Health Crisis (GMHC) on an intervention called the “Tunnel of Love,” a four-part workshop series for gay men on anal health. The theory stated that if gay men are helped to develop agency and knowledge over their bodies, they would be in better positions to make healthier choices for themselves, especially in the face of possible risk. After Ayala was granted the award, the CDC balked—“as if they had just realized what they were supporting,” he told me. “They got so nervous they asked us to change elements of the intervention and curriculum. I got long e-mails from the CDC project officer, who kept saying things like, ‘I don’t understand why this would be an HIV prevention program when you’re not telling gay men to abstain from anal sex.’” The project officer insisted he change the intervention to have a component discussing the virtues of abstinence. His reason? He didn’t want the CDC in a position where the intervention could be scrutinized by conservative members of Congress. “We said, ‘We’re not willing to do that,’” Ayala told me, “so we gave the money back. We had no choice.”
The problem here is obvious: Most community-based organizations are in no position to give grant money back to the CDC. Strings are unambiguously attached to gay health policy, and this shortchanges gay and bisexual men.
The most recent hullabaloo surrounding a UC San Francisco study that warned of a gay sexually transmitted drug-resistant staph infection, or MRSA, centered around comments by its lead author, Binh Diep, PhD, who was quoted as “very concerned about a potential spread of this strain into the general population.” Predictably, Concerned Women for America issued their own press release after UCSF’s, titled, “Gays May Spread Deadly Staph Infection to General Population.” After intense pressure from a few community activists, the UCSF Department of Public Affairs issued a tepid apology on their website, stating, “We regret that our recent news report…on MRSA USA300 with public health implications contained some information that could be interpreted as misleading. We deplore negative targeting of specific populations…” Indeed, considering MRSA also affects school children, football players and prisoners, the widely reported study focused on “sexually active gay men.”
In the case of the New York Patient, the high-pitched rhetoric surrounding his story in 2005 rested, among other things, on the fact that he carried a multidrug-resistant strain of HIV feared, as is now a common theme in the public health–media dyad, to be a harbinger for the future of AIDS (or staph or gonorrhea or TB). Some activists and prominent AIDS researchers accused the New York Health Commissioner of fear mongering for calling a press conference over a single case, given that similar examples of fast progressing, multidrug-resistant HIV had been documented before, including one by Julio Montaner, MD, in Vancouver a few years earlier in men whose viruses were now under control.
How much of a threat is the type of multidrug-resistant HIV that afflicted the New York Patient? In 2004, the CDC started the Variant, Atypical, and Resistant HIV Surveillance (VARHS) system in 11 states to study the prevalence of drug resistance. According to VARHS’s data from early 2007, 10.4 percent of individuals newly infected with HIV showed resistance to at least one HIV drug available at the time. Only 1.9 percent of new HIV infections show evidence of multidrug resistance, defined as resistance to at least one medication in two or more classes of drugs. Of these individuals, 1.4 percent had resistance to drugs in two classes, and 0.5 percent to drugs in three classes—this was the unfortunate and very rare level of resistance of the New York Patient’s HIV.
“Did this turn out to be a supervirus that was uncontrollable? No, of course not,” Martin Delaney, executive director of Project Inform in San Francisco, told me by phone. “Was it untreatable? Of course not. And I just wonder how much harm was done by it. How much more hatred and vilification was stirred up against the gay community? How much dissention within the gay community of groups with different views?”
Though the New York Patient was in full support of the press conference and says he was treated well by public health officials, he was nonetheless anguished by his depiction in media. Everyone knows the press run toward fire, and there’s no resolving here the corrosive effect this has on public dialogue. What’s more troubling is how readily media take their cues about misbehaving gay men from the gay community itself. There was no shortage of prominent gay activists, health officials and writers uncritically feeding both the apocalyptic scenarios surrounding the New York Patient or his presumed disreputable character.
I write this knowing many excellent people and programs that work on behalf of gay men’s health, folks who debate the unintended consequences of the deficits approach to gay health and the professionalization of HIV activism whose affect has marginalized ordinary gay men who bring their own practices, concerns and desires to the discussion and influence of health policy. I would argue we are losing a larger battle concerning gay and bisexual men’s autonomy over their bodies and the right for gay men to claim meaning for their sexual practices that resist the narratives of pathology.
In these examples I am not denying the harm that HIV and its treatments can cause. But the use of disease as terror, invoking the worst-case scenarios and placing gay men on continual red alert, is a failed strategy by health officials that will continue to widen the gulf between them and the ordinary men they purport to serve. Activist Michael Petrelis recently asked on his blog, “Will 2008 be the year in which the gay community finally demands an end to health scares whipped up against us, based on flimsy and questionable evidence? Are sexually active gay men and our health advocacy groups willing to say ‘no more alarmist wolf-at-the-door’ approaches to gay health?”
That is yet to be seen.
The Absence of Politics
On a Fuzeon preparation mat, a laminated work station that comes with the drug, the New York Patient places alcohol pads, two syringes and two small vials, one with sterile water, the other with the powdered medication. With the larger syringe he draws the sterile water out of one of the tiny bottles and shoots it at an angle into the other filled with this powerful drug that has kept him alive for three years when other treatments have failed. We are in his living room. He’s wearing khaki shorts, flip-flops and a pale baby-blue print shirt which he lifts to show me his belly covered in a shocking rash of welts—red, bruised and painful. He grabs my hand and directs my finger to one of the injection-site sores, a smooth, flat and surprisingly hard lump of inflamed tissue about two inches in diameter. He lifts the legs of his shorts to show me his thighs, also covered. The fabric from his clothes can become an unbearable irritant, and every day he places ice packs to soothe the pain and swelling. With his fingers he searches, alternating from legs to belly, right side to left, for a spot with the least amount of tenderness.
The Fuzeon powder takes 10 minutes to mix in water, and at that time he draws the prepared mixture into the smaller syringe then flicks it gently with his finger to release air. He locates a small area on his thigh more in recovery than healed amid this field of sores, dabs the spot with alcohol, takes a quick deep breath, then presses the needle into his thigh letting out a small gasp as it disappears into his leg. Slowly the liquid drains into his subcutaneous fat and almost immediately bubbles at the surface of his leg into a reservoir that will take several hours to absorb. Every day, twice a day he repeats this procedure. “I wouldn’t be here without it,” he tells me.
This is what can happen with HIV in its most rare and dangerous of strains. Preceding the injection, he’d swallowed 18 pills, a staggering array of HIV prophylactics and vitamins, down in one gulp of smoothie he’d prepared with protein powder, fresh strawberries and apple juice. On the coffee table sits a square black zipper case, the size of an extra-large makeup bag, which stores all these medications taken every day to stave off his difficult-to-combat virus. He will soon start Isentress, the first integrase inhibitor class of HIV medication approved by the FDA in October—a respite if not permanent alternative to the harrowing daily injections.
I watched the unsettling scene as if in another time, say the early ’90s, evoking the history of AIDS suffering I know mostly from the literature of the day, the devastatingly immersive detail of misery by great chroniclers of that era, men not much older than I who bore the brunt of the plague. The New York Patient is of that generation, but his experience with AIDS is distinctly of this time—solitary, stigmatized, yet hopeful that pharmaceuticals will take him from one decade to the next.
“I was put back on Fuzeon,” he told me somewhat exasperated, after failing a different regimen that caused his liver enzymes to skyrocket. “I was feeling like I wasn’t succeeding in my treatment even though I was putting so much work into it. I also had this interaction with a guy I had romantic feelings for that didn’t work out. I started getting angry at the virus, angry at the medications, angry at the injections,” he told me. “In the past I felt frustrated for having the virus, but never angry. Now I felt really pissed.”
Anger has not come easily to him in our conversations. He had told me he felt “numb” during the initial crush of media attention that portrayed him as depraved. He felt scared to be so ill and grateful to get better. His process of picking up the pieces has depended more on a spiritual awakening than a clenched-fisted response to poor decision making and even worse luck.
A friend of mine recently commented that the absence of anger in HIV activism today is the absence of politics. By politics he did not mean “equal rights,” or the sort of “Fight AIDS” activism that resonated in the past but feels meaningless now. The absence of politics, of anger, is one in which the voice of ordinary gay men unbiased by funding streams and institutional affiliations is rarely heard outside the researcher’s qualitative interview. Anger is an emotion the New York Patient could hardly access given the anger directed at him, at people who do meth, who have unprotected sex, who become HIV positive. The New York Patient’s anger is not externalized; it’s directed at his virus, at his tainted blood, at himself. What he is reflecting is a state of affairs of being a gay man today, in particular one with HIV. Anger is not allowed.
It barely seems to matter that he, like others with HIV, is stigmatized, or that gay men’s sex practices are pathologized, as long they keep HIV-negative men uninfected. Gay men’s very existence is equated with disease in a call to protect the “general public” while our national LGBT leaders are more inclined to call gay men “complacent” than to indict a health establishment that has built an entire industry around the so-called deficits of gay men. How have we arrived at this place where in the interest of health, stigma has become institutionalized?
From his living room we moved to his bedroom where he showed me his altar sitting on top of a bureau. There sat a small Buddha statue, some rock crystals and a golden elephant. He had a quill and a stack of papers he said were prayers. He also had the results of his last blood test, his health insurance certificate and a flyer for the Path to Self-Mastery workshop at Friends In Deed. “The circumstances of your life do not determine the quality of your life,” he said, one of the teachings of his Mastery class. On the wall above his altar hung a painting, quite beautiful, that he did in a workshop at GMHC: vivid colors of red meant to signify pain, green for hope, yellow for light, blue for serenity and purple for melancholy in abstract blocks side by side like dramatic rock formations. He has taken refuge in the spiritual, which along with psychology, has come to mediate our inner selves with the world at large. The personal used to be the political. Today it is simply personal and best worked on in therapy. What we are left with is accountability that starts and ends at the individual. This is a time in American HIV activism that is militantly anti-political.
Crystal Meth Uncensored
Just after Valentine’s Day last year, the New York Times published an article called “A Kiss Too Far?” discussing how charged and potentially dangerous a public kiss remained between men. Accompanying the article was a photograph of two men embracing one another standing near Robert Indiana’s famous LOVE sculpture, lip-locked in a kiss. The caption read: “Could a gay couple who weren’t hired models get away with this in Manhattan?” When that article appeared I thought, “If a gay kiss is racy, even unsafe, in Manhattan in 2007, then actual gay sex—the lusty, panting, grinding rhythm of two naked male bodies—is dissolute by comparison.” The discussion of the New York Patient with his “reportedly hundreds” of unprotected sex partners while on crystal meth takes place in the same cultural context where a public gay kiss might incite a gay bashing. This incredible reality of the taboo of ordinary gay affection biases any discussion of the “party ’n’ play” sexual behavior that is common under the influence of copious amounts crystal. This has never been an objective conversation—not in media, not in public health, not even among gay activists themselves.
“I lost control,” he told me. He met an HIV-positive couple from Connecticut with whom he did crystal in the summer of 2003, around the time his meth use became frequent. Throughout the AIDS epidemic he had managed to stay HIV negative by practicing one simple rule: He never bottomed without a condom unless in a relationship with a partner he trusted. For 20 years he was primarily a top (often without condoms, he told me) and remained HIV negative. But with this couple on crystal he betrayed his own rules. “My inhibitions about protected sex went out the window,” he said.
By early fall 2004 he was doing crystal three weekends a month and became concerned. “Then I realized, my God, where am I? Am I in trouble here? Do I need to look at this closely?” At that point he asked his therapist if he was an addict and his therapist said he was borderline. “He told me to stop completely and if I couldn’t, he would find me the help I needed.” He did stop but within two months fell ill with HIV and has never done crystal again. As for that couple in 2003, he’s not angry at them and says only, “They’re very good people. I don’t blame them. I blame crystal.”
Susan Kingston is a crystal methamphetamine expert and educator with the Public Health Department of Seattle and King County. “We portray this drug as if it’s its own cognitive entity,” she told me by phone. “We call it Tina. We personify it.” Kingston is a no-nonsense, straight shooter who has worked on the gay–meth connection for over 10 years and takes a decidedly unfantastic approach to meth in communities where infectious hyperbole dictates the response to this drug.
Last summer she gave a talk she called “Crystal Meth Uncensored—What the DEA and the Media Won’t Tell You,” at Chicago’s LGBT community center, where she intended to set the record straight. “Despite what our hysterical Chicken Little media tells us,” she said, “only about 10 percent of gay men have used meth in the last year.” She broke down that 10 percent like this: About half use crystal once or a handful of times and never again without any problems; the other half are what she calls “regular users,” and half of these will use meth problematically or have significant dependency, like the New York Patient had. “So the media has it right for about 2 to 3 percent of the gay community,” she said.
What she’s resisting is the “crisis of the month” approach to gay health, and I think she’s right to do so. Where some take the position that crystal meth use is so destructive it is worth stigmatizing, Kingston finds the approach counterproductive. In fact, she discusses what she calls the “myths” of crystal meth—that it is the most addictive drug, hardest to get off, worst ever to hit the community—in an attempt at leveling with a population she understands as savvy around drug use and anti-drug messages. “It oversimplifies the nature of addiction to say that one drug is worse than the other,” she told me and added with a penchant for catchphrases, “The most addictive drug out there is the one you are addicted to.”
In discussing his crystal use with me, the New York Patient slipped into the redemptive language of psychology: “I was probably more open to or wanted to be more open to be free with myself, free with my feelings, free of that shame I carried so many years. Crystal gave that to me somehow.” It is hard for people to understand, myself included, how any gay man in a large city could not know the risks involved with crystal meth. But this is how the New York Patient described his progression to meth abuse. Nobody, regardless of the substance, expects to develop a dependency, perhaps because most people don’t.
Why is victimhood so often the antidote to the pariah status? Where in the New York Patient’s “victim” profile do we make sense of his close and loving network of friends, some of whom I spoke with, who stalwartly defend his character? What of his successful career? What about his resiliency, that quality that people in the helping services covet in their clients, the conscientious tending to his body and mind, his focused purpose on helping others? He has risen to the occasion. He is not a victim. He, like the rest of us, is a full range of contradictions, experiences and possibilities. He faltered. He made mistakes. He had very bad luck. But he has responded proactively, imperfectly and profoundly. The gay community (like every minority) is rife in narratives spun through the stifling categories of “villain,” “victim” and their successful cousin, “hero.” Is our movement mature enough for complex characters? Is the language of recovery, of spirituality, of psychology adequate to describe transgression without resorting to metaphors of sin and redemption?
Whatever combination of shame, pleasure, escape, adventure and denial that brought the New York Patient to use crystal, the drug undeniably contributed to his seroconversion, as it has for many other gay men. But is beating crystal meth the silver bullet to stopping HIV? “In Seattle we know a third of HIV-positive guys have used crystal,” Kingston said pointing out that the link is not necessarily causal. “If we’re looking at crystal as the cause of increased HIV transmission and syphilis transmissions, then how do we explain the other two thirds? We can’t blame all this on crystal. Increases in unsafe sex and syphilis and HIV in New York City happened long before crystal meth showed up.”
The meta-narrative of the New York Patient’s crystal binges raised once again the specious question: Why do gay men risk their lives for sex? “I think crystal meth is cart in front of the horse,” said Kingston decisively. “Crystal meth isn’t fueling unprotected sex and hence HIV transmissions. Gay men’s desire to have good old-fashioned sex the way it’s supposed to be is what fuels crystal use.”
Barebacking Redux
A red screen flashes a statistic: 25 percent of men with HIV don’t even know they’re positive. “Come over here. We need to talk,” says a gravelly voice that you recognize immediately as the no-nonsense tone of Whoopi Goldberg. She appears in her famous shaded spectacles and an incredulous posture. “You think barebacking is cool? Are you kidding me?” she exclaims standing in front of a red, in-studio backdrop covered with various-size words and phrases such as healthy, honesty and self-respect. She continues, “We can stop HIV transmission. A condom says, ‘I love myself.’ Talking about HIV says, ‘I respect you.’ Love and respect, baby. That’s cool.” Whoopi along with Susan Sarandon, Rosie Perez and Amanda Peet each deliver two different 30-second public service announcements that ran in New York City in 2006 with overlapping messages about HIV, unprotected sex, crystal meth and self-love. For example, Rosie Perez asks us, “Condom? No Condom? Is that a question?”
In fact, it is among the most germane questions concerning gay men’s health whose elusive answer has mountains of research dedicated to it even if here the question is asked glibly by a straight celebrity. On an online gay men’s health discussion group to which I belong, these ads were fiercely debated. One man posted, “Well, I know a few of them in fact have barebacked and have the progeny to prove it. So it is especially irritating that there seems to be no room for gay men to make a thoughtful decision not to use condoms...Whoopi has unsafe sex and she gets a baby shower. I do it and I am a psychopath.” And herein lies the problem: No such words as thoughtful and unprotected dare enter the U.S. HIV prevention lexicon in the same sentence. This man’s reaction illustrates the crux of the protracted debate activists have had for a decade over sex and HIV that the New York Patient brought, once again, to a boiling point.
Over the years, the dialogue around unprotected sex has evolved as researchers have made it a favorite subject of study, so that what was initially seen as fringe behavior has been largely reframed as a problem, albeit a common one, of mental health. This work has produced a constellation of psychological syndromes, afflictions, deficits or social miasma to explain sex without condoms: low self-esteem, survivor’s guilt, loneliness, drugs, alcohol, lust, condom fatigue, AIDS fatigue, depression, sex addiction, poverty, slipping up, homophobia, internalized homophobia, racism, invincibility, complacency, because it feels better, childhood sexual abuse, self-destructiveness, sexual compulsiveness, denial, lack of education, resignation, love and the list goes on. Yet the primary reasons both HIV-positive and HIV-negative gay men give for having unprotected sex is to feel greater physical pleasure and to feel more emotionally connected with their partners—the same reasons straight people bareback. Far less frequently men cite a dislike of condoms, being high on drugs or alcohol or to do something taboo. Despite the formidable challenges gay men face in their lives, more often than not we embody a tremendous range of responses, strategies and successes. At the end of the day this is our story, not the list of deficiencies that have reduced us to a pre-Stonewall, pre-feminist notion of the patient under the omniscient gaze of the doctor.
I won’t resolve here the different points of view over barebacking, intentional unprotected sex, natural sex, raw sex—whatever you want to call it. I don’t believe there is a resolution. It is a subject deeply entangled in the normalizing politics of gay assimilation, in personal histories of grief and fear, in individuals’ boundaries of safety, in their sexual ethics and sense of morality that is formed by the minutiae of experience, politics, culture, emotion, that make us who we are.
To say the least, it is challenging to speak sensibly about gay sex, especially in the United States, when one is up against powerful institutions—health, media, politics – invested in determining all risk as pathological, gay men as damaged, disease as crisis, and HIV as it used to be—a virtual death sentence—instead of what it has become for people on antiretroviral meds: a chronic disease that must be managed with regular quality health care, individualized treatment and a broad range of physical, mental and, for some, spiritual health practices to help them live as close to a normal life span as possible.
People still die of AIDS. The treatments can and often do cause mild to moderate (and less often, severe) side effects, and scientists are now identifying long-term health consequences, such as increased risk for liver and cardiovascular disease. Some activists and public health officials are convinced gay men don’t know this or have forgotten or are in denial or don’t care, and the proof is their continued risk taking, in increased HIV infections, drug use, depression, loneliness, (insert here long list of deficits from above). This loop starts with sexual risk and doesn’t usually but sometimes does result in new HIV infections that are used to justify the pathologizing of gay sex, the deficits approach to our health, the use of disease as terror to curb the risk taking that doesn’t usually but sometimes … and on and on.
I suggest a way out of this all too familiar vicious circle, besides the obvious demands for universal health care and fighting poverty (two social justice issues that would do more for reducing HIV infections than all behavioral interventions combined): We must stop using HIV as the primary gauge to measure the gay well and unwell. There are other health challenges, like drug abuse, mental health, obesity and smoking, that are also harming gay men and lesbians. If HIV continues to be the barometer by which we assess the wellness of gay men—instead of one among many physical, mental and spiritual health concerns—then we are destined for generations of failed gay and bisexual men, because risk will not diminish as the consequences of it do.
During one of the last times I saw the New York Patient, late in 2007, he took me to see his painting that hangs at GMHC. “I realized something,” he told me on our way there. “I was looking at all the drawings and paintings I’ve done since I joined the art workshop. I used to sign my paintings with my name followed by the initials SV for supervirus. I stopped doing this in the middle of last year and didn’t even realize it.”
The supervirus has been put to rest.
We’ve stayed in touch by phone, grabbing lunch when I’m in New York or sometimes by quick e-mails to tell me how he’s doing. “I have visited three high schools this year on HIV prevention talks!!!” he wrote recently. “It feels GREAT talking to these young students, especially since they are such a high target of newly diagnosed these days.” He’s been dating here and there, he told me, and his health has been good. He has been off the Fuzeon injections for a few months, and the Isentress appears to be working. His injection-site sores have all but gone away, leaving a few scars on his legs and stomach. His last CD4 count was 292, and his viral load remains undetectable. “I’m getting closer to feeling as well as before HIV,” he told me during one recent phone conversation. “I’m slowly getting my life back. Hopefully I’ll get back to work sometime soon.”
Considering all he’s been through—all we’ve been through—this is news worth celebrating.
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