“Hostility.” John Richard Allan sums up in a single word his experience as an openly HIV-positive man dealing with guys who believe themselves to be HIV-negative. It goes beyond personal rejection, he says, to wholesale ignorance and denial about how the virus is transmitted. This stigma pushes positive guys out of the social scene and into isolation, Allan argues. “I wouldn’t wish this on anybody.”
The misunderstanding is mutual, according to David Lewis-Peart, a prevention advocate and one of the contributors to HIV Stigma, a unique online blog that recently challenged community members to think about stigma and its impact on both negative and positive gay men.
“I knew not all negative guys would grasp the experiences of positive men,” he says of website participants. “But I didn’t anticipate the lack of understanding from positive guys about where negative men are coming from — or their frustration and anger.”
In these days of increasing criminalization of HIV transmission and exposure, more and more negative folks — from media to the courts to the gay community at large — lay the blame for HIV completely upon those who already have the virus. And in turn, many positive people respond with anger, mistrust and fear. As these barriers go up, so do transmission rates.
How can we reverse these dangerous and counterproductive trends? I asked a group of positive and negative-identified guys who care about HIV prevention. All men expressed their personal opinions, rather than the views of the organizations with whom they are associated.
They told me we ought to move beyond our obsession with the ethics of HIV-positive people, toward a model of shared responsibility and open discussion. Demand accountability not just from individuals, they said — but from communities and institutions that have a direct impact on infection rates. Speak — and listen — to one another, with candour and compassion.
Our initial response to HIV was so inspired and effective because the gay community was forced to band together in the face of smug indifference and deep-seated ill will from much of the rest of society. Independent queer publications got out the latest treatment news, from mixed messages about the toxicity of AZT to high hopes for AL 721, a failed treatment derived from egg yolks. We massaged the feet of our friends who lay in sickbeds. All of us stood together at vigils and marches. Everyone had a stake in promoting safer sex.
The face of HIV has changed — but so has our shared sense of identity. Broader social acceptance makes life easier for queer folks overall, but erodes the need for community at the same time. We’ve become virtual — trading the drop-ins and bars for websites like gay.com. AIDS is easier for many to ignore. New treatments mean people with HIV live longer — but at an evident cost of less support and understanding from their peers.
Today, the gay community shares with society at large an inordinate fixation on the behaviour and ethical decisions of people who know they have HIV. And some experts say this is actually harming our goal of reducing new HIV infections — instead of helping.
Focussing exclusively on whether poz men wear condoms or disclose their HIV status “is missing the mark,” says Bob Leahy, one of the facilitators of the HIV Stigma website.
“We must also pay very close attention to untested men who believe they are negative,” says Leahy, reflecting the fact multiple studies have indicated the majority of new infections are actually coming from this group, not self-aware poz folks. Part of the solution, he argues, is ramping up efforts to ensure that all sexually active gay men not diagnosed as HIV-positive continue to get tested on a regular basis.
People who know their positive status should be the least of our concerns, suggests Nicholas Little, men’s outreach coordinator at the AIDS Committee of Ottawa (ACO). “We know — based on evidence — that people who’ve been tested, diagnosed and receive regular care from their doctor are the least infectious.”
Yet these people are the ones singled out for community censure and who bear the brunt of the impact of criminalization in this country, even in cases of HIV “exposure,” where no virus has even been transmitted from one person to another. “Canada has more HIV-exposure convictions than anywhere in the world,” says Edwin J Bernard, a Berlin-based expert on HIV criminalization internationally.
We need to factor knowledge about viral load into the equation, adds Leahy. Eighty percent of positive gay men on treatment have an undetectable viral load, he says, noting that with or without condoms “it’s becoming possible that some people who are undetectable may not be much of a danger to other people.”
Says Bernard, “It’s a very dangerous thing to not acknowledge that effective treatment has a huge impact on the risk of transmission.” This complicates the very idea of HIV exposure — it could be the case that, in the context of successful treatment, no one is being exposed to anything. Except for prison sentences, that is.
Much attention has been focused on the notion that people with HIV have an obligation to disclose their status, even if they engage in safer sex and do not expose others to significant risk — from Globe and Mail columnist Margaret Wente to a study by UK-based Sigma Research indicating a majority of gay men expected disclosure under all circumstances.
This idea is worth a closer look, though. “Failure to disclose does not transmit infection, unprotected sex does,” says Ted White, an epidemiologist doing a postdoctoral fellowship at the Yale Center for Interdisciplinary Research on AIDS. White believes minimizing the risk of exposure is more important than revealing status. HIV Stigma’s Lewis-Peart, who is also MSM prevention coordinator with Toronto’s Black Coalition for AIDS Prevention (Black CAP), agrees. “I definitely don’t feel it’s a necessity when measures have been taken to make sure the sex is safe as it can be.”
Both men see benefits to disclosure, though. Lewis-Peart advocates discussing HIV status in the context of developing healthy, long-term relationships, so the virus doesn’t become “the big elephant in the room” that’s never addressed honestly. Yale’s White sees practical implications: “An inexperienced bottom might ask a positive guy who’s fucking him to pull out before ejaculating, even though he’s using a condom. One might say that he should ask the same of negatives as well. But disclosure can help two men who want to fuck make decisions that support their staying healthy and happy.”
Disclosure isn’t required for safe and ethical play, and dwelling on it draws away attention from institutional issues that allow HIV to thrive, says ACO’s Nicholas Little.
“I’m not trying to say there is not an individual dimension to this, but too often we focus on that,” says Little. “We demonize individuals but rarely are we equally critical of structural problems.” One of those problems, he notes, is access to appropriate testing and counselling.
“I get tested in Ottawa regularly and it is often a very uncomfortable situation,” says Little. Nurses have laughed at him and asked insensitive questions. “I’ve had nurses run after me to ask my status after they’ve pricked themselves with a needle.”
“There is rampant homophobia and HIV-phobia [in testing facilities] — and this is a structural disincentive to identifying as gay and to learning your HIV status.” Little points to the opening of the gay men’s health centre Gay Zone in Ottawa as a step in the right direction.
Who is responsible for teaching gay men about sexual risks? Little says we have a right to expect full support from the educational system. “It’s staggering that in 2009 there is no provincially mandated standardized sexual education in schools. Kids end up becoming adults who don’t know the risks,” he points out. “How on earth do we expect gay men to know how to prevent HIV by the time they are 17, if we don’t talk about it? But you can be sure that if one of those kids seroconverts, the blame will be placed on the individual level.”
Ted White looks to the gay community itself for greater leadership. “We seem to have dropped the ball on this,” he argues. “Our community has the obligation to promote an understanding of our sexual health on every level, from the fulfillment it can bring as well as the outcomes we wish to avoid. We’re the ones to do it,” he says, noting that our efforts deserve public funding.
Community institutions and need to promote deeper education and greater realism, says John Richard Allan, an artist who is developing a poz-centric personals website called PozPlanet. He is wary of those who claim HIV-negative status at all, or even HIV-positive men who declare themselves “undetectable” in terms of viral load.
That information is “expired upon receipt,” he argues. “Literally, we never know what is going on in our bloodstreams.” He adds that local AIDS service organizations need to modernize, and expand their efforts online. “They are not even on Facebook and YouTube — perfect cost-effective opportunities to do outreach.”
Does taking sharper aim at institutions mean we need to avoid questions of interpersonal ethics? No, says White. But to date, he points out, such discussions have been “limited to polemics that anyone who has unprotected sex is a sociopath, or that viewing these issues through an ethical lens is inappropriately judgmental and bullying.” In short, we need a more multidimensional approach. Says Black CAP’s Lewis-Peart, “We talk a lot about our individual rights as positive and negative men, but not as much as we need to about our responsibilities — and those responsibilities are shared.”
Acknowledging the human face on the other side of the HIV fence allows us all to understand one another better. “Sometimes we negative men can act in ways that are not considerate of the feelings for HIV-positive guys,” admits Peart-Lewis. “But when we behave in stigmatizing ways, it’s not out of malice — it’s out of fear.”
He asks positive men to think back to the time before their diagnoses to try and understand. “Our experience of being HIV-negative can feel so tenuous — and sex can be scary for us sometimes. Try and think back to what a tightrope walk it was to be negative.”
Despite the impression that media and courts make with their allegations of “deliberate” HIV infection, “it’s important to remember that the vast majority of people with HIV do not want to transmit it to anybody,” says Edwin Bernard. In fact, a recent CDC bulletin indicated that in a given year, 95 percent of people with HIV did not pass the virus on to anyone else. Overall, people with HIV should be seen as heroes of the epidemic, not its scapegoats.
In fact, both positive and negative men have urgent and courageous positions in the war on new transmissions and against ongoing stigma and discrimination. Our viewpoints and experiences may not always be the same, but “accentuating that divide is not helpful,” says Bob Leahy. “Both poz and neg men have a role to play in addressing the epidemic. It may sometimes be a different role, but we all have a role.”