By Lawrence Ferber
Stigma: a mark of disgrace associated with a particular circumstance, quality or person.
Hearing the words “I’m HIV-positive” made Bryan* (names and some details have been changed) freeze.
A 23-year-old graphic designer, Bryan had met a guy at a Manhattan gay club, a svelte 25-year-old tourist, Zach, with whom he danced, drank and laughed. Around 1 a.m., just before heading to Zach’s hotel for more private activities together, Zach disclosed his positive HIV status. His viral load was undetectable, successfully suppressed with a drug regimen to the point it was low to no risk for transmission. He was clear of other STDs, and he packed an ample supply of condoms.
Bryan declined to go back with him, though, offering up a politely worded excuse rather than saying what he really thought: “I don’t sleep with HIV-positive guys.” Zach, however, had heard those words, or variations of the same, more than a few times since his diagnosis a couple of years ago, and he could see them clearly in Bryan’s green eyes. He felt like shit, judged, tainted, and while Zach wouldn’t lie and tell someone he was negative, he understood why so many others in his shoes have and do.
Bryan ended up getting lucky a couple of hours later at another bar with Alex, an architect-in-training from Chicago who said he was negative.
There’s a twist: Bryan, in fact, was positive, although he wouldn’t find out until six months later when he got tested for the first time in almost three years – something he put off because, in the back of his mind, he was concerned about a bareback encounter with someone he met on Grindr who deleted his profile the next day, disappearing as if in a poof of smoke.
“Stigma is really damaging on both ends,” says Matthew Rodriguez of comprehensive HIV/AIDS resource site, The Body. “For negative people, stigma can sometimes stop them from getting tested. If they feel they did anything that put them at risk, they may not want to get tested because the result may be devastating. I think it also stops people from interacting with those living with HIV as full people. People just look at you as a status, as a virus. It can also stop people from going to the doctor or seeking treatment, because that’s admitting they have the virus.”
At best, HIV stigma can lead to an emotional sting, lost connections and deep blows to self-esteem, and at worst, life and career-threatening discrimination and dangerous, destructive behavior to others and oneself.
A recent study by Houston, Texas’ LIVE Consortium on the topic of HIV stigma within the gay/bisexual male community was published in the International Journal of Sexual Health (read it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136678/). It concluded that, “because it is realistic to expect that in a climate in which HIV has become increasingly invisible and closeted and in which infections are on the rise (due to stigma), gay and bisexual men will be increasingly affected and infected by HIV.”
Numerous organizations and campaigns are addressing HIV stigma, from those created exclusively for that purpose, including the two-year-old The Stigma Project and HIV Equal, to online resources like The Body, Avert.org and HIV Plus, to hookup apps like MISTER. The latter, in collaboration with Michigan’s Mr. Friendly HIV non-profit, allows members to declare a commitment to “Live Stigma-Free” and date individuals of any HIV status on their profiles.
Despite these, stigma is only getting worse within the gay community, which LIVE’s disheartening study backs up. “I find often that stigma is self-imposed, out of underserved and unwarranted shame and guilt,” shares Olympic gold medalist swimmer Greg Louganis. HIV-positive since the 1980s, his life is chronicled in the new documentary, “Back On Board,” currently making the rounds at festivals. “The biggest problem is it inhibits open communication, and we still in this society have a difficult problem talking about sex.”
Longtime AIDS activist Peter Staley, a subject of David France’s Oscar-nominated documentary “How To Survive A Plague,” describes stigma as, literally, a “viral divide between those who perceive themselves to be negative and those who are positive. There are a lot of negatives to living with HIV the rest of your life — having to keep your health insurance in order, meds, side effects — but the big one now is the stigma.”
“I think a large number of negative men, especially if younger, try to avoid HIV just by avoiding people with HIV,” he explains. “They think they’re protected by a kind of moral code where a positive guy would disclose. On the flipside, the positive guys are so threatened by that stigma that they keep their status a secret, and that perpetuates the false assumption by many negative guys there isn’t a lot of HIV in their world. They think it isn’t something playing out in their generation that much, even though it is.”
New Yorker Steven Colon, a 21-year-old videogame design student who was diagnosed with HIV this past summer, now knows this sobering reality firsthand. Prior to his seroconversion, discovered during routine HIV testing (preferring to bareback with some partners, he frequently kept tabs on his status), Colon only had sex with partners who identified as HIV-negative. Not due to stigma, he asserts, but by virtue of the fact that nobody ever informed him they were positive. After receiving his results, he contacted these partners, but none have come forward to say they were actually positive or have tested positive since.
“It’s a little upsetting I don’t know who it is,” he admits.
Colon, who promotes a monthly superhero/spandex/lycra-themed party at NYC’s Pieces bar (called Skintight USA), found some immediate support amongst a couple of friends who, coincidentally, also tested positive at about the same time. Staley feels that a major failing with most anti-stigma campaigns play to the choir and fail to reach their target audiences, like gay millennials, whose new infection rates are, as illustrated by Colon’s social cluster, rising.
On the ACT UP NY Alumni Facebook page last month, member Rebecca Reinhardt reported some flabbergasting, ill-informed comments and opinions she overheard at a West Hollywood happy hour for Ivy League 20-somethings. Pearls of overheard misinformation included: condoms are useless since they always break and you have only a two percent chance of getting HIV from unprotected sex anyway, and PrEP, if even aware of it, entails a waste of money since it’s just for sex addicts anyway.
“I’m not wagging my finger at these guys,” Staley interjects. “This generation of young gay men is not worse than mine. They’re just living in different times. When I was twenty, I also perceived risk very differently and was very dismissive of things that happened earlier in history and didn’t think applied to me.”
One exception when it comes to prevalence of stigma and misinformation seems to be San Francisco, where many early PrEP adopters live. Even those who argue that PrEP encourages reckless behavior that can cause upticks in other STD infections, like Hepatitis C, are at least having open communication.
“San Francisco is the shining example of where, if you put stigma on a locality ranking scale, you’ll find the least stigma of anywhere in the country,” Staley says. “They also have a very low HIV infection rate because guys there talk and think about HIV and have a much more reasoned risk analysis. There will be a negative guy sleeping with positive guys, but asking about their viral load and making certain decisions and positions determined by that. That sophistication is lost on many young gay men outside San Francisco and New York City. I want to figure out the best way to reach them, and it’s likely going to come from (within) their generation, not mine.”
Activist Jack Mackenroth, who was open about his HIV-positive status while a contestant on Project Runway, agrees that it’s difficult to get people who don’t think (or want to think) that HIV directly affects them engaged. He feels that once PrEP use grows more widespread, medical treatments advance and positive people become more visible, HIV stigma will dissipate. Yet, with stigma winning the battle today, is it possible to take this destructive force and, like with the Terminator model T-800, reprogram and somehow wield it for constructive, prevention-forward purposes? To replace fear and loathing with understanding and empathy, and to ultimately humanize HIV-positive individuals? Perhaps — and in a handful of sizes.
“It would be useful to set someone down and say, ‘Imagine you are positive,'” Mackenroth muses. “You want to know what it feels like — wear a T-shirt saying you are positive all day long. You will feel that that’s like.”
That’s exactly what founder Kevin Maloney’s Rise Up To HIV is doing with its “No Shame About Being HIV+” T-shirts. Members of NYU’s First Year Queers & Allies leadership program wear these to experience reactions from those who would perceive their shirt as a status announcement. It’s a start, and an experiment that more schools and colleges should look into.
“I’ve worn it and gotten mixed responses,” says The Body’s Rodriguez. “Honestly, anyone can get HIV. The whole problem with stigma is (it perpetuates that) someone had to do something wrong to get HIV. But we know from science that, with gay men, two-thirds of infections happen within the context of relationships. I applaud people who don’t let status stand in the way of having a sexual relationship. It’s usually not the positive and on treatment guys one should be second-guessing. It should be the ones who don’t know. The only ones who know their status for sure are positive.”