HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
The first time I went country-western dancing in Boston, I danced with HIV. Or rather, I danced with a man named Jack, who was HIV-positive. It was at the Boston Living Center, a service center for people affected by AIDS. Jack and I were both new to this kind of dancing -- and strangers to each other -- so we were awkward in each other's arms.
Dancing with Jack made me nervous, not just because we were strangers, but because I knew he had AIDS. Burgundy lesions from Kaposi's sarcoma spilled across his face. I did not fear touching him, but I did not like seeing his lesions. I wanted to look through them, to see the person beneath the pox. But I could not ignore the visible signs of the virus ravaging him. His lesions marked him as someone with AIDS and therefore marked our difference. I had just learned that I was HIV-negative.
Two-step dancing etiquette encouraged us to remain slightly apart, a legacy of the time when women wore petticoats and men held themselves an arm's length away to make room. When Jack and I two-stepped together, both of us in blue jeans, this formal distance carved out a space between our bodies, a nearly palpable column of air.
I think of this moment when I consider the divisions between HIV-positive and HIV-negative gay men. We are dancing the same dance and we are dancing it together, but we are separated by a distance. A space intervenes, a self-imposed barrier to closeness. At any moment, if I wished, I could have moved closer to my dance partner. That I didn't was a sign that I preferred to maintain my distance. Dancing with Jack, I wondered silently to myself, "What if he likes me? What if he is interested in more than just a dance together?" I didn't want to get closer. I preferred to hold HIV at arm's length.
That I wanted to avoid getting close to Jack because I knew he had AIDS left me feeling ashamed. I believed it was wrong to discriminate against people based on their HIV status. Indeed, I had looked with horror and indignation at the ways some people had reacted to AIDS with avoidance, scapegoating, and violence: fearful neighbors burned a family in Florida out of their home, for instance, because one child had AIDS. As a gay man in a community enlightened about AIDS, I imagined I could never behave in such an ignorant or irrational manner.
I understood the foundation of such prejudices, though. Early in the epidemic, I too was tempted to define AIDS as "other." Like many gay men, I denied the threat of the epidemic by imagining that it was something that happened to other men, in other cities -- to men who were older, more promiscuous, less educated, more reckless -- to anyone, in short, but someone like me. As the epidemic persisted, it began to hit closer to home. Soon it was no longer a matter of a few reports from New York or San Francisco. As I met people in Boston with AIDS, my denial began to erode.
As I admitted my own vulnerability to HIV, I became more committed to reacting without prejudice toward people with AIDS. My commitment was based not only on community solidarity but also on a kind of self-interest: I would not want others to shun me if I learned I was infected. In this way, not knowing my HIV status in the early years of the epidemic helped me avoid discriminating against those with AIDS.
Testing changed that. Learning I was HIV-negative caused meto think differently about AIDS than I had before. Suddenly, I could not so easily presume that I was HIV-positive. I began to feel more vulnerable to HIV than I had before and wanted to protect my HIV-negative status. To my dismay, learning I was HIV-negative unleashed a kind of thinking that I thought I had conquered: AIDS once again became "other."
The most damaging aspect of defining AIDS as "other" is that it encourages us to view people with HIV as if they are nothing more than HIV itself. When I wrote above that "I danced with HIV" and "I preferred to hold HIV at arm's length," I illustrated the trap of identifying Jack with a virus, of equating him with HIV and thereby dehumanizing him. Several of the men I interviewed fell into this trap, using the phrase "people who are HIV" when they meant "people who are HIV-positive." This slip of the tongue reveals how readily we dehumanize those who we believe threaten our health. Because HIV is infectious, HIV-positive people can seem more threatening to the HIV-negative than they would if they had other disabilities or diseases. After all, we don't say "people who are blindness" or "people who are cancer."
HIV testing reveals an objective difference among gay men: It divides us into those who are infected and those who are not. This objective difference, however, is overlaid with many subjective meanings that heighten the divisions gay men experience based on HIV status. When I learned I was HIV-negative, some of these meanings about HIV positivity and HIV negativity resurfaced, even though I believed I had discarded them long before as stereotypical thinking:
As much as I tried to banish these simplistic polarities from my thinking, they were hard to repress, and they continue to influence my attitudes about HIV-positive and HIV-negative gay men. How many of these terms crossed my mind unbidden as I danced with Jack?
In the above table of paired terms, perhaps only the first few pairs are neutral. The rest undeniably damn the HIV-positive and laud the HIV-negative. The left column demonizes the HIV-positive as dangerous and morally corrupt, while the right column portrays the HIV-negative as vulnerable and morally upright. This is no accident. It reveals how easy it is for the HIV-negative to moralize about the HIV-positive. Indeed, the table shows how HIV testing -- ostensibly a scientific assay -- can become a surrogate for moral evaluation.
The term "HIV status" itself holds a couple of competing meanings evident in the above table. In one sense, the word "status" implies a rigid social or moral hierarchy, like caste. In the table, HIV-negative status is portrayed as better than -- rather than merely different from -- HIV-positive status. In another sense, the word "status" implies a state of being that is mutable, like a status report. When HIV-negative gay men think about the possibility of becoming HIV-positive, they realize their HIV status is something that could change, that is precarious, and that they may wish to protect.
The table of meanings of HIV status suggests at least two ways of interpreting my desire to avoid getting close to Jack after I learned I was HIV-negative. The left column suggests one interpretation, that I feared Jack, an HIV-positive man, because he represented a threatening "other." The right column suggests a different interpretation, that my reaction may have been an expression of a desire to preserve my HIV-negative status as something valuable. Both interpretations are important to consider when looking at the ways in which HIV status causes divisions among gay men.
In chapter 4, Robert discussed receiving an HIV-negative test result and feeling that being HIV-negative was "something tremendously valuable." He felt it was something precious and desirable, something that needed to be protected and guarded. Robert's sexual experience with an HIV-positive friend in Provincetown was traumatic for him precisely because it seemed to him to threaten his HIV status, although his friend did not consider the encounter particularly unsafe.
Because being HIV-negative is highly valued, and because it is something that can be threatened by sexual intercourse, I liken it to virginity. Testing HIV-negative is a kind of "revirginization" for many gay men. It seems to offer "another chance" to those of us who have had sex we fear might have been unsafe. Testing HIV-negative tells us that we are "good," that we are clean, that we are saved, redeemed, absolved. "Go," we imagine the test counselor telling us, "and be unsafe no more."
Could a heightened sense of vulnerability and related feelings of "revirginization" be responsible for the fear of intimacy that engulfs some gay men after they receive a negative test result? Could a heightened sense of being infectious and related feelings of being "dangerous" be responsible for similar fears among gay men who learn they are HIV-positive? Could these feelings lead to reluctance to form new friendships, especially with those whose HIV status is different?
"I avoid people who admit they are HIV-positive and would not consider any sexual contact with them, even contact considered safe," said Buzz, a 37-year-old real estate investor from San Diego, California. "It may be considered cold by some, but in my book, someone who is HIV-positive is a dead man. Sex with him would be on par with putting a gun to my head."
With those words Buzz expressed in raw form a feeling present among many of the men I interviewed: a reluctance to become sexually involved with HIV-positive gay men if at all possible. In describing a hypothetical HIV-positive partner as both "a dead man" and "a gun," Buzz brought out two distinct ways in which relationships with HIV-positive men are difficult for HIV-negative gay men: They involve becoming close to someone who is likely to fall ill, become disabled, and die; and they involve a risk -- if the relationship includes a sexual component -- of HIV infection. For some HIV-negative gay men, these risks are too great, and as a result they seek only HIV-negative partners.
When I asked how learning his HIV status influenced his sexual behavior, Doug, a 37-year-old computer programmer, also from San Diego, told me how he tries to avoid having sex with people who are HIV-positive. "My friends are all HIV-negative, I believe," he said. "I also have tended to stay with certain people longer rather than risk what someone new might bring. Further, folks who I used to play with I avoid just because of where they live: San Francisco, L.A., Berkeley, Boston. And finally, I find myself with much younger guys, ones that have had no previous experience." Through these strategies, Doug hopes to reduce the chance of becoming involved sexually with someone who might infect him with HIV.
Although fear of infection is probably the greatest motivator for discrimination against the HIV-positive, the men I interviewed also mentioned other reasons. One of the chief ones was that such relationships do not seem to offer permanence. "I'm afraid of being attracted to someone who might die soon," said one man. "I fear the anxiety that I might die as a result of the relationship, but I also experience a fear of being left behind, of being left alone. I want to be able to envision myself with my partner ten years from now, even if at any time one of us could be hit by a bus."
Another man, recognizing that he often becomes involved in relationships in response to neediness in his partners, told me this: "I recognize that it might be dangerous for me to be involved with an HIV-positive man. Not because I fear infection with the virus, but because I know that I very easily slip into a routine of accepting other people's dependence on me. It is very attractive to be needed by someone else."
Kevin, 46, who in chapter 5 described postponing getting an HIV test because he didn't want to feel distant from his partner with AIDS, told me that he did not want to watch another partner die from AIDS. "I have to ask myself, 'Could I do this again, have a positive partner?'" he said. "And when I'm really honest with myself, I say no. I feel uncomfortable about that, because my life has been built around nondiscrimination, yet I'm saying, 'Please don't be HIV-positive in my bed.' It's a form of discrimination, like saying, 'No fats, no femmes, no HIV-positives, please.'"
It is sometimes difficult for HIV-negative gay men to admit publicly that they discriminate against the HIV-positive when looking for a sexual partner or relationship, because discrimination is so painful for gay men. Sam, 30, whose narrative appears in chapter 10, admitted that he wants an HIV-negative partner but is reluctant to talk about this and is not forthright about it when dating.
Because of HIV-negative gay men's reluctance to appear discriminatory, personal ads in gay newspapers only rarely specify that someone is seeking an HIV-negative partner. Occasionally I have seen ads in which a man discloses that he is HIV-negative or is seeking someone who is HIV-negative. More often I have seen the word "healthy," sometimes used as a code word to imply "HIV-negative." In contrast, I have quite often seen ads in which men disclose that they are HIV-positive or are seeking an HIV-positive partner. Indeed, some newspapers have established separate sections in the personal ads specifically for HIV-positive people, a visible example of the way in which the HIV-positive are "divided" from the HIV-negative. Why is it acceptable -- indeed encouraged by gay newspapers -- for HIV-positive men to seek HIV-positive partners, but not acceptable for HIV-negative men to seek HIV-negative partners?
It could be argued that the existence of separate sections in the personals for the HIV-positive is simply a consequence of widespread rejection of the HIV-positive by the HIV-negative. But HIV-negative gay men are not solely responsible for divisions among gay men based on HIV status. Positive gay men too sometimes discriminate against HIV-negative gay men, seeking relationships only with other HIV-positive men.
HIV-positive men who seek HIV-positive partners do so for a variety of reasons. Some say that even though they practice safer sex, having an HIV-positive partner eliminates the concern that they might infect an uninfected partner.
Others find that being HIV-positive means they experience life in a way that they imagine HIV-negative men cannot fully appreciate. "There may be many reasons why HIV-positive men would want to date other men with the same HIV status," said one man I spoke with. "Some of them might not even have anything to do with infection. Perhaps the experience of being HIV-positive changes your life in such profound ways -- in terms of your immediate and long-term plans -- that you want to be with someone with similar experiences."
Ross, a 37-year-old human resources counselor for a university, learned he was HIV-negative after he found out that his lover, John, was HIV-positive. Together he and John walked along the shore of Lake Ontario, talking about the difference in their HIV status and the distance it seemed to impose on their relationship:
John was disappointed by my negative status. What he said was, "Well, that changes everything." It was like, "You can't understand. You're different from me. It's just not the same." It makes me angry when people who are positive say, "Well, you're negative, so you don't know." I find that very frustrating. I can't say I know what it feels like, but I can understand my experience of it, what it means to me.
HIV is fucking my life up too. It has caused me pain. No, it's not the same, but my life isn't a bed of roses just because I'm not HIV-positive. I don't have the disease physically in me, but it's emotionally and mentally in me. I'm not infected by it, but I am affected by it.
Because John was living in Rochester and Ross was in Boston, their relationship suffered from physical distance as well as the emotional distance John felt. Ross told me that although he still loves John, the sexual aspect of their relationship has ended.
Another reason HIV-positive men might seek HIV-positive partners is that HIV-negative men encourage them to. "I've found myself trying to convince HIV-positive friends of mine to date other people who are HIV-positive," said one man I spoke with. "I find myself hoping that my HIV-positive friends might match up."
Because of the division that HIV status poses to gay men, and because of the many forces that encourage gay men -- both HIV-negative and HIV-positive -- to develop sexual relationships with partners of the same HIV status, it was only a matter of time before the word "apartheid" was used to describe social and sexual segregation based on HIV status.
I first saw this term in a 1991 article by Charles Barber in NYQ, a now-defunct weekly magazine. In the article, titled "AIDS Apartheid," Barber voices frustration at the ways in which HIV-negative and HIV-positive gay men have erected barriers among themselves:
In gay male communities, walls have gone up, and lines have been drawn; some of us are in, and some of us are out. ... Prospective sexual partners are screened for their HIV status.... Many HIV-positive men report blanket rejection. Many couples in which one partner is HIV-positive and the other HIV-negative have completely shut down their sexual lives....
... Have people with HIV and PWAs withdrawn into lonely spaces, seeing themselves as poisonous and therefore to be kept apart (apartheid literally means "apart-hood")? Do HIV-negative people have a right, in pursuit of "risk-reduction," to discriminate in their choice of sexual partners...?
According to Barber, the fact that HIV-negative men sometimes shun HIV-positive men as sexual partners has created a"rigorous climate of sexual apartheid, a climate so rigorous that several friends of mine have been quizzed on their HIV status on the telephone before someone they'd met would agree to even a first date." Barber suggests that the attempt by HIV-negative men to screen out HIV-positive partners betrays an irrational fear of infection, and possibly more:"Is it HIV itself that negatives are afraid of contracting," he asks, "or is it a fear of getting close to illness, and possible death?"
The discrimination that Barber described is a real phenomenon, but is "sexual apartheid" the most useful term to describe it? Those who use the term do so because they know it is an emotionally charged word. After all, it is difficult to argue in favor of apartheid of any kind. The term appeals to HIV-positive men who feel they need its emotional charge to adequately describe the magnitude of the hurt they experience when they are rejected because of their HIV status.
There are several ways in which the term "apartheid" is misleading when discussing discrimination in the gay community based on HIV status. First, it calls to mind the racial segregation formerly in place in South Africa. Although prejudice may be at the root of both racial apartheid and discrimination based on HIV status, it is unfair to compare state-imposed segregation to individuals' acts of discrimination. Discrimination based on HIV status is not mandatory, nor is it universal: many HIV-negative men have partners they know are HIV-positive.
Second, sexual "apartheid" is not sponsored solely by one group at the expense of another, as was the disenfranchisement of nonwhites in South Africa. HIV-negative men are not the only ones who choose sexual partners of the same HIV status; HIV-positive men do too, although the reasons are sometimes different.
Third, sexual "apartheid" depends on the participation of HIV-positive men in order to function. To disrupt it, HIV-positive men need merely refuse to disclose their status. This was not the case with South African apartheid, which was based on the visible characteristic of race.
Barber describes how rejection by the HIV-negative depends on disclosure by the HIV-positive. He mentions a workshop he attended for HIV-positive men during which he watched a videotape by David Wojnarowicz and Phil Zwickler. The videotape, called Fear of Disclosure, features a telephone conversation between two men:
They get hot and prepare to meet for action until one reveals that he has the virus, at which point the other promptly rejects him and hangs up....
...One of the first lessons many men with HIV/AIDS learn is the price of telling the truth: Once we clearly state to a partner who is HIV-negative or who hasn't been tested that we're HIV-positive, suddenly safer sex is no longer seen as safe. Condoms develop a curious tendency to be likely to break only when one partner is openly HIV-positive. In this instance, as throughout our cultures, silence and deception are rewarded; truth-telling is punished. As Vito Russo once remarked to me, "Safer sex is something that HIV-negative people do together."
The irony here is that the fear that leads some HIV-negative men to act in a discriminatory way may actually encourage HIV-positive men to be quiet or dishonest about their HIV status, a consequence that HIV-negative men may not have anticipated and that undermines the purpose of their discrimination. Barber, Wojnarowicz, and Zwickler do not suggest that HIV-positive men should disguise their HIV positivity or decline to disclose it. They simply point out the irrational stance that HIV-negative gay men take when they are willing to behave one way sexually with someone of unknown HIV status, but an entirely different way once they learn someone is HIV-positive.
In one important respect, the term "apartheid" fails to illuminate one of the most painful aspects of discrimination based on HIV status: that it occurs voluntarily among men within a community, rather than being legislated by one community against another.
Early in the epidemic, gay men fought against those who suggested that people with AIDS should be sequestered or quarantined. We prided ourselves on our ability to educate people about HIV and to counter the myths that led people to distance themselves from the HIV-positive. That the HIV-negative might themselves seek distance from the HIV-positive is disturbing because it suggests hypocrisy: although we denounce discrimination, we may ourselves be practicing it in our most intimate relationships. Not only do we betray HIV-positive gay men by abandoning them, but we betray the gay community by abandoning its commitment to nondiscrimination.
Besides the political price, gay men who divide themselves from others because of HIV status also pay another, more personal price, because they cut themselves off from others. In a 1994 GQ article titled "When Negative Meets Positive," Dudley Clendinen describes his dilemma as an HIV-negative gay man when he finds out that someone he is interested in developing a relationship with is HIV-positive."What are we to do?" he writes. "If I am to grow in love and humanity, do I decline to take risks, refuse to make myself vulnerable, cut myself off from anyone who threatens me with the possibility of intimacy, love and death? Isn't that what any investment of real feeling is about? Risk?"
Clendinen resents the way that HIV has caused people to seem hazardous and suggests that divisions between HIV-positive and HIV-negative gay men damage us all:
I don't want to think of people as I now think of cigarettes and alcohol. As toxic. I don't want, having given up tobacco and whiskey and wine, to think that now I have to give up people, too. If we all begin to recoil from one another, it will be not just the protection of our lives that we ensure but also the death of our souls.
Clendinen is unwilling to recoil in this way. Near the end of his essay, he describes how he might answer an HIV-positive man who asks whether they will see each other again:"I would breathe, and with what now seems an effort of will say again what I have come to believe I believe. That we all live with the virus now. We all are affected. Some of us have it and some of us don't, and both kinds of us have to decide whether we are going to draw a line between us. I have decided that I will not, because the person I love could be on the other side."
Just as the HIV-positive must accept that we cannot eradicate HIV from the physical body, so too must those of us who are HIV-negative accept that we cannot eradicate the HIV-positive from the social body. And yet the desire to escape from AIDS by running away from the HIV-positive is a compelling one, even if it is not practical. Woody, a 52-year-old HIV-negative support group leader in San Francisco, told me about this fantasy:
Occasionally I find myself thinking, "I wonder if I could just go away somewhere, someplace where people are just living normal lives?" In this fantasy, everything is simple and straightforward again. The men in my HIV-negative support group talked about this fantasy over and over, the desire to run away from it all. Some men actually claimed that they were going to try to run away. Others would ask, "Where are you going to go?"
James, 44, whose narrative appears in chapter 22, told me that he struggles to hide his rage when he hears men express this desire to run away, and yet he has also found a way of viewing this desire in a more forgiving light. Wanting to run away, James suggests, may be just a way of expressing our fatigue with the epidemic, and our desire to avoid the HIV-positive may be just a way of expressing our desire to return to a time when there was no AIDS, to live in a world without AIDS. Is there anything wrong with that, aside from its impossibility?
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Conclusion · Appendix A B C · Notes · Contributors