HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
One day in 1994, as I walked to the Boston Public Library in Copley Square, I saw a teenager with a small white button pinned to his chest. In bold black letters the button proclaimed, "HIV-." I had never seen such a thing and was immediately overcome by curiosity and revulsion. I wanted to ask the youth where he had gotten the button, and at the same time I wanted to shake him by the shoulders and berate him for flaunting his HIV-negative status. "How dare you wear that button!" I wanted to exclaim. "Don't you realize how offensive it is to HIV-positive people?"
Instead of confronting the youth, I walked on, puzzled at my emotional reaction. Why was I so disturbed by his button? After all, I had spent the past few years facilitating a support group for HIV-negative gay men. I was beginning to think that adopting an "HIV-negative identity" might help men remain uninfected. Couldn't wearing an "HIV-" button be an aspect of HIV-negative identity? And yet I bristled at it.
What I was forced to confront when I saw the youth wearing an "HIV-" button was my own ambivalence about my HIV-negative status and the propriety of disclosing it publicly as an aspect of my identity. To wear an "HIV-" button seemed like an affront to the HIV-positive. It struck me as boasting, rubbing one's own good fortune in the face of those less fortunate. My reaction may have been a form of survivor guilt: I was reluctant to publicize my HIV-negative status out of deference to the HIV-positive.
Born in 1963, I grew up on the cusp of the AIDS epidemic, influenced by sexual mores both before and after the epidemic began. I share with gay men older than myself the idea that one should not boast about being HIV-negative because that status is not something one has earned. Like Simon Watney, quoted in chapter 9, I sometimes think that my being uninfected is largely a matter of the whim of fate, and that I have an obligation to recognize an essential solidarity with infected gay men. And yet I share with the button-wearing youth -- and others who have become sexually active in the era of AIDS -- the idea that being HIV-negative is a kind of achievement, something to be celebrated, encouraged, and prized. So I at once want to proclaim my HIV-negative status and yet be mute about it. Can I adopt an attitude that embraces survival if I am ashamed to proclaim being a survivor?
Paul, 35, whose narrative appears in chapter 6, told me that when he designed a T-shirt for a gay pride parade, a friend who saw his preliminary design suggested that he make two versions. Paul was repulsed by the idea:
He suggested that I have two sets of T-shirts made up -- one that had a negative symbol in the pink triangle and one that had a positive symbol -- so that people would be able to recognize immediately whether the person was positive or negative. I just had this visceral reaction: "You can't do that."
The friend who suggested two designs had recently learned he was HIV-negative after fearing for many years that he was HIV-positive. "He was kind of grandiose about it," Paul said, "and it bugged me." Paul did not think uninfected gay men should go around wearing their HIV negativity on their sleeves, so to speak. "A pink triangle is a symbol of community," he said. "If you start differentiating a positive sign and a negative sign within it, it's a community divided, don't you think?"
When I pressed Paul about this, asking how he felt about HIV-positive gay men who wore buttons or T-shirts advertising their HIV-positive status, he said this seemed different: "To hear about somebody doing that when they're positive seems okay. Somehow, if people do that when they're negative, it doesn't seem right. Isn't that interesting: it's like a double standard. Flaunting your negative status seems arrogant."
Paul agreed with me when I suggested that perhaps the reason for this double standard is that being HIV-positive is a stigmatized position, an "outgroup" identity. To claim that being HIV-negative is an "outgroup" identity that deserves to be acknowledged may seem as bizarre as a "heterosexual pride" parade or a "white power" rally. There is no weight to the "stigma" of being HIV-negative.
What Paul pointed out is that expressing an HIV-positive identity is acceptable in gay culture -- perhaps even viewed as courageous -- but that expressing an HIV-negative identity is unacceptable -- perhaps even viewed as insensitive and divisive. Alan, 31, elaborated on this idea when he told me that the Boston HIV-Negative Support Group was a good idea, but that HIV-negative identity was not:
The issue isn't that we're HIV-negative. The issue is that we're HIV-negative in the context of this crisis. The crisis is the problem. What do you do when you're not sick, you haven't tested positive, but your community is in crisis? The support group is a great idea, because that's what they deal with.
But HIV negativity is not the issue, and building an identity around it outside the context of the support group I see as being very damaging and not useful. Because outside that context it is about alienation, and it is about division, and it is about superiority.
The challenge that HIV-negative gay men face is this: How do we go about valuing our HIV-negative identity without alienating or devaluing HIV-positive men?
Gay men have a history of taking symbols of oppression and turning them into icons of identity. The pink triangle used by the Nazis to mark homosexuals in concentration camps has been adopted as a symbol of gay identity. More recently, the epithets "faggot" and "queer" have been reclaimed by some gay activists as terms of empowerment. It did not surprise me, then, that when HIV-positive gay men found themselves a stigmatized minority within a minority, they reacted by claiming "HIV-positive" as an identity rather than a label.
At a gay and lesbian health conference in Houston in 1993, I saw oversized T-shirts with the slogan "HIV+" emblazoned across the front in pink letters almost a foot high. For an HIV-positive person to wear such a T-shirt is to display his HIV status to the world without shame and to force passersby to confront their feelings about people with HIV. Wearing such a T-shirt -- like wearing a pink triangle -- is a way of making visible something invisible, of making public something private, of turning a stigma into a symbol of identity.
Even more controversial than T-shirts proclaiming one's HIV-positive status is the practice of tattooing "HIV+" on one's body. When a conservative commentator suggested that HIV-positive drug users be tattooed on the arm and HIV-positive gay men be tattooed on the buttocks, his idea was dismissed as reactionary, recalling as it did the identification of concentration camp prisoners by Nazis. That gay men might tattoo themselves is an act with a very different -- and potent -- political meaning. Such tattooing -- which has been reported in the Pacific Northwest -- is a deliberate establishment of identity that marks one's difference from others in a visible way. It reveals the stigmatization that HIV-positive status bears in our culture, and expresses -- in the tattoo's permanence -- the ineradicability of HIV within the body.
In contrast to the permanence of HIV positivity is the impermanence of HIV negativity. This impermanence may be the chief reason that it is difficult to establish an HIV-negative identity.To put it bluntly, no one would tattoo "HIV-" on his body, because being HIV-negative is not a fixed characteristic.
"I'm bugged by this HIV-negative identity stuff," said Alan. "I think it's a fucked-up thing to build an identity around, because it's variable. It's not something that you can say at any given moment is the truth." HIV-positive identity, on the other hand, is much clearer. If you are infected with HIV, your HIV status is not "variable." The difficulty of establishing HIV-negative identity is thus partially related to a dissymmetry inherent in HIV testing: HIV-positive test results are considered reliable indicators of HIV status, but HIV-negative test results are not.
I have mentioned in earlier chapters that many gay men do not believe their negative test results. This disbelief sometimes indicates that they feel they do not deserve to be uninfected or that they believe that becoming infected is inevitable. Even when men do believe their test results, being HIV-negative sometimes seems like a provisional status, something precarious that could be lost at any moment. It is difficult to build an HIV-negative identity if men are reluctant to claim it as something they deserve or something they expect will continue.
The fragility of HIV-negative identity became especially clear to me at a 1994 HIV-prevention summit I attended in Dallas. During the conference, a group of HIV-positive and HIV-negative gay men gathered to discuss whether AIDS education should address men of different HIV statuses differently. When these men introduced themselves and announced their HIV status, the HIV-positive men invariably said that they were HIV-positive. Sometimes they mentioned the date when they were diagnosed with AIDS. The HIV-negative men, on the other hand, did not say that they were HIV-negative. Instead, they said things like, "I tested negative in September of 1989" and "I was negative the last time I was tested," as if they could never be sure of their HIV-negative status. I'll bet that if someone marketed buttons or T-shirts with the slogan "HIV-Negative (So Far)" they would have sold well at that conference.
Another reason that HIV-negative status seems an improbable thing to organize an identity around is that it is defined by the absence of a medical condition rather than the presence of one. Dudley, 42, who in chapter 13 discussed being in a positive-negative couple with Michael, put it this way:
I can't imagine somebody going around saying, "I don't have breast cancer, isn't that fabulous?" But I do know people who go around saying, "I had breast cancer and I survived it." I look at survivors as people who have had something and survived. But what would be the point of going around saying, "I'm not living with AIDS"? It doesn't make a lot of sense.
I don't identify with the concept of HIV-negative identity. I'm just a healthy gay person, and part of my being healthy is that I happen to be HIV-negative and intend to stay that way.
Dudley suggests that an HIV-negative identity is equivalent to saying that one is "not living with AIDS." But as the men I interviewed have made clear throughout this book, being HIV-negative is a form of "living with AIDS." That HIV-negative status is defined by the absence of a medical condition does not mean that HIV-negative gay men do not have a unique position and an identity associated with it. Nor should it dissuade us from developing an HIV-negative identity and supporting others with that identity. Precedents for this kind of support already exist: there are support groups for spouses of terminally ill patients, for children of alcoholics, and for siblings of schizophrenics, to cite just a few examples.
The very precariousness of HIV-negative status should inspire us to develop HIV-negative identity in order to maintain it, just as recovering alcoholics develop a "sober" identity even though that sobriety may be difficult to maintain. Self-help groups that encourage gay men to stay sober offer a model to consider when looking for ways to encourage gay men to stay uninfected. Like sobriety, HIV negativity is a state of being that can be lost by doing something pleasurable. The difference is that when an alcoholic in recovery falls off the wagon, he can get back on. When an HIV-negative gay man falls off the HIV negativity wagon, he cannot.
I don't want to suggest that the sexual behavior that threatens HIV negativity is comparable to addiction, but I do believe that the principle of mutual support that underlies 12-step groups may be useful for HIV-negative gay men. Information about forming HIV-negative support groups appears in the appendixes. We need to support such groups and find other ways to "sponsor" HIV-negative identity.
At a January 1995 steering committee meeting for the Boston HIV-Negative Support Group, one man suggested that the group march with a banner in the next gay pride parade. The suggestion raised in me the same discomfort that the HIV-negative button on the teenager's chest did.
Much as I support the idea of HIV-negative identity, the concept of "HIV-negative pride" struck me as bizarre. The word "pride" sometimes connotes "feeling superior," and that troubled me. But "gay pride" is really just a synonym for "gay self-esteem." There's nothing wrong with that, so what could be wrong with the concept of "HIV-negative pride"? The self-esteem of uninfected gay men is important, and celebrating it might even help uninfected men stay uninfected.
If my own conflicting feelings about marching in a gay pride parade as an HIV-negative gay man are any indication, though, it is unlikely that this will happen soon in Boston. There are too many forces militating against it: shame about being HIV-negative, reluctance to identify oneself as a "survivor" in an ongoing epidemic, uncertainty about HIV-negative status, and the simple desire to be quiet. All these forces conspire to make it difficult to develop, support, or advertise HIV-negative identity. As a result, I believe few HIV-negative gay men will want to make their presence visible in gay pride parades.
To measure just how far we are from that point, I invite readers to examine how they feel carrying this book around. Do they experience discomfort? Are they afraid of what people will think of them? How many readers, I wonder, will hide the cover or spine of this book from view so that others won't see what they're reading?
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Conclusion · Appendix A B C · Notes · Contributors