Portraits From an Aging Pandemic

When you picture someone who’s living with HIV, what do they look like?

Most people imagine someone who’s wasting away in a distant country (the news media stereotype) or an athletic man who ‘only takes one pill a day’ (the pharma company stereotype).

A participatory art project, The Graying of AIDS: Stories from an Aging Pandemic, is trying to change that picture to include an invisible population: people who, due to advances in treatment, are part of the first generation to grow old with AIDS; and those who’ve become infected later in life.

The project, by photographer and visual journalist Katja Heinemann and health writer Naomi Schegloff, combines portraits and quotes gathered from attendants at AIDS2102, the XIX International AIDS Conference, to raise the profile of people like Jose, a 60 year-old Puerto Rican man who struggles to access treatment because of the health care system’s focus on younger people; and Sharon, a 62-year-old Ohio resident whose doctor thought her positive test must be wrong because “as a white woman in the suburbs in Cleveland, they didn’t think that was MY stigma.”

“The whole point used to be, ‘Hey you should get tested if you can and get into treatment if you need to and then you can live longer,'” Schegloff says. “And so people did, and they are. But then we kind of dropped the ball. People are living longer, so now what?

Heinemann and Schegloff say they want to challenge stereotypes around the disease and around aging at the same time.

To create “Stories from an Aging Pandemic,” the pair set up a pop-up photo studio at AIDS2012 and invited more than 50 older people from around the world to sit for portraits and tell their stories. These collective portraits reflect the aging face of HIV and serve as a historical record, educational resource and advocacy tool. Heinemann and Schegloff are now raising funds to continue collecting stories at AIDS2014 in Melbourne, and to mount a traveling exhibition.

We caught up with Schegloff as the pair’s Indiegogo crowdfundraising campaign entered its final days.

Your Graying of Aids Indiegogo campaign ends on July 11. What are you raising money for and what’s the next step for this project?

The Indiegogo campaign is covering our travel costs to Melbourne and the cost of remounting the participatory installation that we create. Images and quotes from the work that we did in 2012 will be up for people to look at, and there will also be a pop-up photo studio and a place where I can do interviews. And then there is a place where we invite people, no matter their age, no matter their serostatus, to post questions.

We want to recognize that older adults are the experts on aging with HIV; they are our resource. And yet we rarely talk about them, and we don’t take adequate advantage of their expertise. So, we are trying to promote conversations where we are inviting older adults to share their experiences.

What we would like to do once this series is done is create an exhibition that will travel to different kinds of places. Some of them will be high profile places where policy makers will be confronted with the faces and stories and have to address how their decisions effect these people. And some of them will be in more community-based environments where everyday people are invited to question their own assumptions about who it is that lives with HIV, what it means to live with HIV and what aging is really all about.

How is the experience of an older adult living with HIV/AIDS different than that of an HIV infected younger person?

Whatever stigma people might feel they experience because they are aging is made harder by living with HIV. And at the same time, for people who have been positive for a long time, whatever stigma they might have felt because they are HIV positive is only made greater because they are older.

The way you age when you are HIV-positive is different then when you are HIV-negative. And the medications that help address HIV and HIV complications can have a lot of side effects. This is the first generation that is aging with the virus in such large numbers. Which is why we need to be paying more attention to their experiences.


You’ve interviewed people from 13 countries, plus 13 states, DC and Puerto Rico, and now you’re headed to Australia to collect voices from Asia and the Pacific Rim. How did you decide to take this global perspective?

One of the reasons that the focus of our project has shifted from HIV and AIDS and aging in the U.S. to the global pandemic is that with increased access to life saving treatment, what’s happening here in the States is going to be happening all over the world. As more people have access to treatment around the world, people are aging with the virus.

Unfortunately ageism happens around the world. And that’s one of the things that came from “Stories From an Aging Pandemic” – ageism related to older adults’ sexuality is a worldwide phenomenon. Around the world, its very common for folks who collect data on HIV to stop collecting data after age 49. You literally are not counted after a certain age – as if suddenly you stop having sex.


Why do you think older people with HIV/AIDS are being ignored in this way?

Somehow your voice doesn’t pierce the din as well when you get older. People stop listening as much, and that’s a problem. Our project is about raising the profile of this population, challenging the unnecessary invisibility of this group of people, recognizing that they have a lot to contribute, and that we should be listening. We are inviting people to question their own probably unconscious, deeply ingrained ageism. Why is it shocking to see a picture of two older adults in bed together on a bus shelter? Why is that shocking?

That’s a good question. Why do you think ageism is so ingrained in our culture? And why does it so often take the form of denying the sexual lives of seniors?

In one of the interviews that Katja did, someone specifically said, “No one wants to think about their parents or grandparents having sex.” And it’s true that we are all a little skittish about those sorts of things. And that includes doctors, many of whom are younger than their patients and when they look at their patients they might see their parents or grandparents, and they don’t want to think about them having sex.

Maybe it’s the people-not-wanting-to-think-about-older-adults-having-sex coupled with everybody-wanting-to-think-this-is-something-that-happens-to-another-guy. For a long time, AIDS was a death sentence for a lot of people. So it’s much more comfortable to put it in a box and push that box away, and think that it doesn’t have relevance to you. 

What’s exciting about this moment is that you are starting to see this issue of older adults with HIV being covered not just on World Aids Day but year round. There is a shifting in consciousness. And part of that is because the free love generation – the people who championed sexual liberation – are now part of this demographic group. And they will be damned if you are going to ignore their sexuality.


What can we all do to keep bringing more visibility to the issue of older people with HIV/AIDS?

People can help by sharing and ‘liking’ any articles on anything that addresses older adults’ sexuality and HIV risk. When you make it clear that there is an audience, there are likely to be more stories like it.

Also, challenge ageist representations of older adults when they come up in popular culture. There is no shortage of opportunities to get angry about how older adult sexuality is represented. Instead of just quietly internalizing it,  call people out. And that goes for when you go to your doctor, too. If you are seeing a doctor and they don’t take your sexual history, ask them why.

On the selfish level, if people would like to donate to our Indiegogo campaign, that would be fantastic. If people would like to share information about what we are doing, whether it is our website or our facebook page, that would be great.


 Feature image: Jan, 64, New Zealand.

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