By Linda Pentz
“I am HIV positive. Every time I type or say those words, I reflect on my diagnosis and how hard it is to tell someone that I have HIV. Each time I say these words – whether to myself or to someone else – it’s like I am receiving the diagnosis all over again. Even as I work locally, regionally and nationally speaking openly about my status to remove stigma and advocate for persons living with HIV, it is still hard when I have to say, ‘I am HIV positive.’”
The words quoted here belong to Marvell L. Terry II, the Human Rights Campaign Foundation’s HIV/AIDS Project Fellow. But they could as easily have been taken from the script of “The Infection Monologues.”
Written a decade ago by Alex Garner and Eric Rofes, “The Infection Monologues,” is a play that first premiered in 2008 in San Francisco. The script was based on interviews with real people and the infection in question is, of course, HIV. Garner decided to revive the play recently in a reading hosted at the HRC headquarters in Washington, DC. In the version we saw, five gay, positive men described their stories, starting with their reactions to their HIV diagnoses, then examining the hows, whys, what nows and other life questions.
Many of their questions have been overtaken by the advent of PrEP. But as Garner said when we talked before the performance, “while the scientific landscape of HIV has drastically changed, the cultural landscape today hasn’t changed nearly as quickly or as much.”
What remains said Garner, himself HIV positive, is the “fear, stigma, misinformation.” Despite the advancements, he said, “so much of the social stuff is really ingrained in 30 plus years of the epidemic.” And that stigma still makes things difficult today especially, said one of the performers, Cedric Gum, “in the South where people are still living in the 80s where it was this huge death sentence.”
HIV is still considered an epidemic. A new study by Wilson et al. found “The steepest rise in HIV diagnoses between 2005 and 2014 was among young gay and bisexual men, with increases ranging from 56 percent among young white men to 87 percent among young black and Latino men.” The study found that a majority of the young men observed had an extremely low rate of viral suppression. One explanation for that was a lower rate of awareness about PrEP in the younger group. (PrEP is the use of HIV antiretrovirals as a preventative for those who are HIV negative, rather than as treatment for the HIV positive.)
Garner, whose co-writer Rofes died unexpectedly of a heart attack in June 2006, acknowledges that his play is dated by the absence of any discussion of PrEP, which was yet to arrive.
“But it’s an opportunity for us to reignite the conversation or extend the conversation,” Garner said. Today, the play can contribute to “exploring the modern narrative of HIV,” he added. “I think while we’ve done really good work around PrEP and the experience of negative men, we still have a lot of work to do around understanding the modern experience of gay men living with HIV. The cultural response to PrEP creates the opportunity to talk about all these other things, gay men’s relationships, sexuality and lots of other stuff.”
There is some graphic sexual content in the play which is, as Garner says, “pivotal to the gay male experience.” It is also what drives Garner’s political agenda. “Sexuality, sexual health is top of my priority list in terms of my politics,” he said. “It’s a social justice issue.” Opportunities such as his play reading “can be a way to help us focus on those issues and prioritize them for our larger core community and for our health,” he said.
While PrEP has allowed negative men to feel less fearful about contracting HIV, Garner says there is also an ironic positive in finding out you are, well, positive.
“The through-line for positive men is that it can be a liberating experience,” Garner said. “Once you test positive you don’t have to worry about it anymore.”
The freedom from worry is helped, of course, by the medical progress that now enables HIV positive people who are diagnosed early to reduce their viral load to undetectable levels, making transmission a very low risk.
Despite this, the characters in Garner’s both poignant and funny play worry about their poz status quite a bit. When each first gets his diagnosis, he runs through a mental — and in some cases extensive — list of possible culprit lovers and passing fancies, including “Spiderman.”
It’s an interesting facet because “how did you get it?” is the question you don’t ask, the one considered most irrelevant. This goes hand in hand with the guilt thrown at those who are HIV positive, something that is not endured by sufferers of other illnesses. No one castigates someone for getting cancer, even if the “how” in their case is, as with some HIV infections, sheer bad luck.
Nevertheless, even if the “how” isn’t asked, the “why” most definitely is. With all that we now know, why would anyone today contract HIV? Just use PrEP, wear a condom!
But not everyone yet knows about, or has easy access to, PrEP. And let’s face it, not everyone wears a condom every time, evening knowing the potential risks. I remember a woman interviewed once on how she could possibly have gotten pregnant when using a cervical cap. “I got caught short in a moment of lust,” she said. Life is full of taking chances, including in the bedroom.
Choosing when and how to declare your poz status has been made complicated, Terry and others assert, by the criminalization of HIV. Currently, in more than 30 states, an HIV positive person can be criminally prosecuted for allegedly failing to declare his or her HIV positive status to a partner.
But, as Terry pointed out, “you are only legally liable if you knew your HIV status.” This creates an environment in which not getting tested is safer, from a legal standpoint. “It gives people a reason not to know their HIV status,” says Terry in an HRC video on the topic, sending a message that “ignorance is bliss.”
There is also “no evidence that these laws help lower HIV transmission rates,” Terry states. If anything, they have the reverse effect. The approach to HIV, he says, “should be less about arresting people and more about helping people.”
Gum said he turned to helping others when he himself received his HIV positive diagnosis in 2012. The young Arkansas native describes the struggles he still confronts despite his own awareness and activism. “The most difficult thing for me is dating, and finding the right time to reveal your status to someone,” he told HRC’s Terry. “I have a hard time with personal conversations about this.”
Mark King, another of the play’s participants, decided to be very public about that conversation. His blog is called “My Fabulous Disease.”
Rounding out the quartet of non-professional actors who joined Garner for the DC reading were Shawn Jain, Communications Director for the Whitman-Walker Health facility in DC and Brant Miller, Program Associate at the DC Center for the LGBT Community.
“Disclosing HIV-positive status is never easy, no matter how many times you do it,” Terry wrote on his blog. “I know many others who share my fears about disclosure – Will I be rejected? Will I be judged? Will I be the target of anger or even violence?”
With more education, greater access to PrEP, and more plays like “The Infection Monologues”, the HIV epidemic may at last begin to abate. And finally, as the first character in the play describes it, there will be no more “unexpected findings.”
Photo Credit: metroweekly.com
