The Graying of AIDS: Stories from An Aging Pandemic
july 14, 2014
By: Katja Heinemann for POZ.com
What do we think of when we hear the words HIV or AIDS? As a visual journalist, the more pertinent question for me is: What do we envision? What images do we conjure up in our minds? This, of course, depends to a large degree on whether or not you've been personally impacted by the epidemic, but for those who encounter the illness in second hand accounts through visual media—through news photos, art, movies and TV series, or maybe through public service announcements and ad campaigns—what collective image library do they draw from?
If they're old enough, they'll recall a number of famous photographs from the early days of AIDS, showing the diminished bodies of patients in hospital beds. There might be news images of ACT UP rallies. Probably a funeral scene from somewhere in Africa. A subway poster showing a young couple with an admonishment to use condoms, or maybe a conspicuously athletic man in his 30s who only needs to take one pill a day. And then...?
What are the iconic images that speak to what it feels like to be living with HIV/AIDS in the United States right now? At this stage in the epidemic, when many of the challenges confronting people living with HIV—like persistent stigma, or criminalization—might not be easily photographable, how do we communicate the urgency of these ongoing issues visually?
One aspect that can be communicated visually and can still surprise people is the aging of the epidemic. Chances are, most people won't picture someone like Bill, a delightful Chicagoan whom I had the pleasure of first photographing when he was a mere 73. (Bill turned 81 last October.) Or Robert in New York City, a gifted musician in his 70s, who spoke to me of his hopes for one more chance at love. Or Sue, 73, who offered me scotch on the rocks in her Florida ranch house while a second batch of chocolate cookies was ready to go into the oven.
Their faces allow us to imagine—more powerfully than statistics can—what the next phase of the HIV/AIDS epidemic might look like. HIV is here to stay, at least for the foreseeable future, but with available treatments the disease has shifted from an acute, life-threatening one to a manageable, long-term illness. Improved medications and access to care have made it possible for someone who is HIV positive to live well into their 60s and 70s. Next year we will hit the milestone that researchers have been predicting for the past decade: by 2015, half of all people living with HIV in the United States will be over the age of 50.
The Graying of AIDS project began as a journalistic inquiry in 2006. I had just wrapped a long-term body of work on the first generation of HIV-positive children who were entering their teens, and were confronting the changes and challenges that accompany that period of life—all while dealing with the stigma and secrecy that were still very much a part of living with HIV/AIDS in America. I thought I was done with covering the subject of HIV here at home, a subject then mostly ignored by the news media, when I came across the "2015 / 50% / 50+" demographic projections that were first publicized in the Research on Older Adults with HIV (ROAH) study by the AIDS Community Research Initiative of America (ACRIA).
Here was another pioneering group of very different long-term survivors, with stories that had the potential to break through the media's fatigue and complacency with the virus. The Graying of AIDS was first published by TIME magazine and TIME.com on the occasion of the 25th anniversary of HIV/AIDS. A multimedia slideshow featured first person accounts from six participants ranging in age from 51 to 73. Among the reader responses, I received requests from a nursing instructor and a public health department official who asked to use these stories as teaching materials.
In 2010, a photography grant from the Open Society Foundations allowed me to team up with a public health educator to tackle the task of re-publishing the documentary on a stand-alone website at grayingofaids.org, featuring video portraits accompanied by a host of health resources and educational tools. Naomi Schegloff has been the other half of the Graying project ever since, long after that initial funding ran out, and together we have brought this body of work to a diverse set of audiences, projecting it at conferences and in a Senate briefing, exhibiting it in art settings, and publishing it in a broad range of media outlets, from print to web to TV, both in the United States and internationally.
Some of the most rewarding moments have been watching people as they view the Graying of AIDS work for the first time, and that light bulb goes on in their head. More than once we have heard someone exclaim: "Wow. I never even considered that someone my mom's age could be at risk for HIV." And when they get home they'll call their moms to share that news.
And this hits squarely at one of the key issues in this body of work. The Graying of AIDS, to a large extent, is a collection of beautiful and sometimes difficult stories told by people who survived the early days of the epidemic, but it is also a documentary that deals with the universal theme of aging, and the invisibility that older adults feel in our society, especially when it comes to being recognized as sexual beings.
Our most recent efforts challenging this invisibility brought the project full circle: Earlier this year, we worked closely with ACRIA on their Age Is Not a Condom series of bus shelter ads, a multi-year sexual health messaging campaign for older adults. The set of portraits we created depicted individuals and couples in beautiful, unapologetically intimate and sensual bedroom scenes. These images were showcased larger-than-life on bus shelters in over 30 locations around New York City throughout the month of May, and were, as one observer put it, "quietly radical" in their insistence on interjecting older adult sexuality into the daily life of the city.
And yet our work is far from over. The aging of the pandemic is not only happening in the United States and other wealthy countries that were ahead of the curve in treatment access, but increasingly in the Global South as well. There are an estimated three million HIV-positive people ages 50 and over in sub-Saharan Africa alone. Indeed, wherever people have access to life-saving medications, we can expect this demographic shift to emerge over time. And yet, we are still envisioning the global AIDS pandemic as primarily affecting younger people.
Stories From an Aging Pandemic, the next installment in our documentary, began with the realization that the XIX International AIDS Conference (AIDS 2012) was going to be in the United States (the first time this event would return to this country in decades), and with it HIV activists from all over the world—surely, some of them would be over age 50. We set up a pop-up portrait studio and an interview station in the conference's Global Village community space and got to work. By the end of the week, HIV-positive adults ages 50 and over from 13 countries, 13 U.S. states, Washington, DC, and Puerto Rico had participated in the project, and we had recorded an amazingly diverse array of stories and created a series of beautiful portraits. But we need even more diversity if Stories From an Aging Pandemic is going to be the truly powerful "collective portrait," educational resource and advocacy tool that we think it could be.
Creating "awareness" is not only about educating people around an "issue" on a purely intellectual level, but also about encouraging them to make emotional connections with people whose experiences differ from their own. Photography as a medium is beautifully suited to evoking emotional responses that prompt this sort of deeper understanding of our shared humanity. As the truism would have it, pictures "humanize" and "put a face on an issue." But really, on the most basic level, a successful still image allows us to contemplate, quietly, and in our own time, what lies outside of ourselves—to "take it in."
One of the most powerful, intimate moments of showing this work over the years occurred when a 50-something woman wandered into our installation at AIDS 2012, looked at the walls, and burst into tears. She had been "numb" ever since she first learned that she had tested positive a few months earlier, and when she turned a corner and saw herself in the portraits on our walls, she suddenly, finally, started feeling all of it. The faces around her showed her that she was a part of a larger global community made up of many people who were still here, decades after diagnosis, vibrant and active and beautiful.
Our public imagination of who we are—individually, as a country, and as a global community—matters. Perception drives policy. When trying to create change, the first battle is always over who controls the conversation—the stories we tell one another, but also the images we share as a collective shorthand to visualize our culture. How can we speed along this process of collectively acknowledging the aging of HIV/AIDS? We know the pandemic is shifting. The initial research, both medical and demographic, has been available for some time.
This next phase of treating global AIDS will require a serious commitment of both political will and funding, but global health efforts have been slow to catch up to the new reality. With a few exceptions, most countries worldwide—and the Joint United Nations Programme on HIV/AIDS (UNAIDS)—don't collect data on HIV in anyone over the age of 49. An estimated 50 million people living with HIV worldwide will need long-term care as they age, not just for their HIV but for the host of other illnesses they are likely to develop, which might be aging- or medication- or HIV-related. Ensuring that they have access to the care that they need will require a complete rethinking of how we have structured and funded HIV care delivery.
I am hoping that Stories From an Aging Pandemic will contribute to this important dialogue and that the additional images and stories we will collect at the 20th International AIDS Conference (AIDS 2014) in Melbourne, Australia, can help us face the changes in the HIV/AIDS pandemic that will have personal, community, national and international implications for years to come. After all, the aging of the pandemic is a beautiful problem to have: we wanted people to get into treatment, we wanted them to be able to survive.
Fourteen years after I first began documenting HIV in the United States, I am still, unfortunately, telling stories of stigma, loss, fear, and isolation—but just as importantly, I am still documenting people expressing hope, building community, and finding meaning and empowerment in advocacy. Naomi and I are excited to attend AIDS 2014 to continue our work on this series. By adding faces and stories from different corners of the world, we hope to drive home the point that the pandemic is affecting us as a truly global community.
Click here to watch the trailer!
The Graying of AIDS is a collaboration between Katja Heinemann, a photojournalist, and Naomi Schegloff, a health educator.Click here for more information and click here to help fund their continuing efforts.