The Graying of AIDSby Eleanor J. Bader
When the epidemic broke out in the ’80s, few would have imagined that it would ever be a problem facing seniors. But according to the AIDS Community Research Initiative of America (ACRIA.org), a Manhattan-based public health advocacy group, by 2015 half of all people with H.I.V. in the U.S. will be aged 50 and older.
Photojournalist Katja Heinemann and public health expert Naomi Schegloff—both Brooklyn residents—call this the Graying of AIDS and have created a public art project (grayingofaids.org) to increase awareness of the magnitude of the ongoing epidemic; enhance our understanding of who is at risk; and shake up people’s assumptions about sexuality and aging.
The project was Heinemann’s idea but was created in tandem with an ACRIA research study, released in 2006, which highlighted the growing H.I.V./AIDS crisis among older adults. The study involved 1,000 New Yorkers infected with the virus. The findings spotlighted their health concerns—most of the participants expected to live significantly longer than those diagnosed decades earlier thanks to new, highly effective, anti retroviral medications (known as HAART) that have made H.I.V. a chronic rather than life-threatening illness. And it also addressed the participants’ issues of co-morbidity, age discrimination, and neglect by service providers and caretakers.
Heinemann says that the study’s revelations pushed her to think about how best to publicize the growing problem of H.I.V./AIDS among aging Americans. Her own interest is that of a professional reporter and she is quick to emphasize that she is not an activist. Nonetheless, she admits that she’s always been drawn to social issues. In fact, before publication of the ACRIA study, she’d photographed and interviewed kids at Camp Heartland (now called One Heartland), a Milwaukee summer program for H.I.V. positive youngsters. Time magazine published her first article on H.I.V., a human-interest piece about the camp, in 2002. The article led to numerous other projects, all using photojournalism to elucidate the day-to-day impact of having H.I.V.
Heinemann recalls that “sometime in late 2005 or early 2006, shortly after the results of the ROAH study were released, I sent another pitch letter to Time, asking to create a photo essay about older Americans with AIDS. At that point the mainstream media had not covered the topic. The editors okayed the idea and in August 2006 the story ran and was very successful. People responded to it because they had not heard about this demographic having AIDS before.”
“A few years later,” Heinemann continues, “I started applying for funding to make the Graying of AIDS into a web presence for anyone wanting to teach and do outreach to affected communities.” A start-up grant from the Open Society Institute gave the Graying of AIDS the boost it needed to set up shop online. Since then, the project has also developed an offline presence—a traveling multimedia exhibition of photos and interviews that has been mounted on Governor’s Island and at numerous conferences around the country.
“Our primary project is to document the epidemic in the U.S.,” says Schegloff, the project co-director since 2010. “But when we learned that the nineteenth International AIDS Conference was going to be held in Washington, D.C. in July 2012, we decided to go. We don’t often have the opportunity to take a bus to an international event so we went and got permission to put Katja’s portraits of people with AIDS on the walls of the Global Village food court. We then set up a studio space and interview station and encouraged people to stop by, talk to us, and have their pictures taken.”
The result—50 studio portraits of men and women representing 12 countries and 13 U.S. states, plus Puerto Rico and D.C.—literally give voice to the pandemic’s human toll.
There’s 64-year-old Jan, from New Zealand, a retired nurse who contracted H.I.V. from an on-the-job needle stick. And Jose, 58, from Quito, Ecuador, who begins his interview by thanking H.I.V. for giving him the impetus to make positive changes in his life.
Still, both Heinemann and Schegloff agree that it is the U.S. project—the interviews and photos of elders living in every nook and corner of the 50 states—that gives the Graying of AIDS its raison d’être. “Adults become invisible as they age and their sexuality in particular becomes increasingly belittled and ignored,” Schegloff continues. “We’re trying to promote an awareness that there are older adults who are living with H.I.V. or who may become H.I.V. positive because they are sexually active. A while back we met a guy who told us that he thought one of the central problems in doing the necessary outreach is that nobody wants to think that their parents are having sex. Even doctors assume that they don’t need to ask older patients sexual-health related questions, take a complete sexual history, or test them for H.I.V. As a result older adults tend to get tested and diagnosed later than they should. They then have worse health outcomes.”
What’s more, seniors typically don’t think of themselves as needing protection—as if condoms are unnecessary once pregnancy becomes impossible. Sadly, skyrocketing rates of H.I.V. transmission among older women point to the reality: Heterosexually active females are particularly vulnerable to H.I.V. post menopause because age-related vaginal thinness and dryness allow for easy transmission of all STDs, including H.I.V. Small wonder that women over age 50 accounted for 22 percent of the city’s newly diagnosed cases of H.I.V. in 2008.
The Graying of AIDS brings stories of impacted individuals to anyone who visits their website—offering something that is part cautionary tale and part testament to human resilience. Seventy-three-year-old Sue Saunders, for one, talks about the isolation and rejection she experienced when she was diagnosed 15 years ago. “When people found out I had H.I.V., nobody would call me,” she begins. “Nobody would talk to me. Nobody would touch me.”
Sixty-year-old Carnetta Best, positive since 1991, addresses the issue from another angle. “The thing one needs to know is, it’s not your fault,” she says. “It’s all kinds of ways of getting it. Your husband can give it to you. Wives can give it to you. It’s what you’re gonna do now you have it. It’s not a death sentence. But you have to change your lifestyle.”
As the personal runs head-on into the political, the Graying of AIDS lets viewers draw their own conclusions about how best to deal with H.I.V./AIDS. Indeed, the project’s many interviews and photographs run the gamut, from funny and sassy to heart breaking. “H.I.V. represents everything we don’t talk about as a culture,” Schegloff concludes. “It hits race, class, sex, gender, sexual orientation, death, and fear of death.”
At this juncture, neither Schegloff, who is 43, nor Heinemann, 44, are sure where the project is headed; nonetheless they plan to continue using the photos and interviews to educate health providers, caretakers, and the general public about the extensive reach of the pandemic. At the same time, both acknowledge that the Graying of AIDS needs funding if it is going to continue and grow. “It’s unsustainable for us to keep doing this without any money,” Schegloff concludes. “We’re both volunteers who work on the project as much as we can but we also have to work at paying jobs. On the other hand, we’re hopeful that even if a genie doesn’t drop a huge grant in our laps, maybe she’ll drop a great grant writer on us to help with promotion, outreach, and fundraising.”
More Articles by the AuthorEleanor J. Bader