
A still image from "Standing Up to Stigma: Family fights HIV discrimination." Katja Heinemann / Aurora Photos
Aurora photographer Katja Heinemann has extensively covered the AIDS epidemic in the United States. Her latest piece, entitled “Standing Up to Stigma: Family fights HIV discrimination,” tells the story of Dr. Robert Franke, who was kicked out of an assisted living home in Arkansas because of his HIV-positive status. The video was published by the AARP Bulletin.
Katja is also currently working on a larger project, called the Graying of AIDS, covering how people age with HIV and AIDS in the U.S. The current project came out of a documentary produced for Time Magazine in 2006.
Aurora Photos: What gave you the idea to pursue the growth of older Americans with AIDS as a long-term project?
Katja Hienemann: Covering HIV/AIDS in the US, like most long term projects, began with a very strong, gut level reaction – in this case to the realization that 20 years into the epidemic, HIV/AIDS stigma was still as strong as ever. In 1999, I encountered some of the teens having come of age as the first generation of kids who were infected at birth, and were now going through puberty with the shameful secret of having a sexually transmissible disease. That first project, On Borrowed Time, lasted six years and was an incredible learning experience both as a journalist covering public health issues, and as a visual reporter. It was the beginning of my immersion in multi-dimensional story telling, using audio and additional materials (such as the kids’ art works and poetry) to fully get at the hidden aspects of a disease. HIV/AIDS is no longer visually explicit in the West, where the physical manifestations of HIV/AIDS are in most cases successfully treated by medical advancements.
The Graying of AIDS is the mirror image of that first project. I had read the stunning statistics of how the disease was aging in the US, and realized it was a great angle to cover the story for the 25th anniversary of the epidemic. Time Magazine commissioned me to produce a multimedia essay for them in 2006, after already having published the pediatric work in 2002. The success of both pieces, in my mind, lies in finding an angle that held enough interest for the readership of a mainstream newsweekly at a time where HIV in the United States was a non-topic. In the public perception the epidemic here is over; the problem solved by medical technology. In reality numbers of new infections have never abated, and the statistics in some areas of the country, especially Washington, DC and the Southern States, rival those of developing countries around the world.
A.P.: Why is this subject important to cover?
K.H.: Research shows that by 2015, more than half of all people living with HIV in the US will be over 50. Thanks to advances in medical treatment, people are living longer with the virus – in some cases more than 20 years (and counting). At the same time, older adults are rarely targeted in HIV prevention campaigns, and often do not realize that their behaviors may put them at risk for HIV infection. As the population of older Americans at risk for – or living with – HIV/AIDS grows, the daily realities and challenges of their lives remain largely invisible in our youth-oriented culture. After the launch of that first Time.com multimedia piece, I was approached by people in the public health and nursing school fields and asked whether the materials could be used in classrooms and for training purposes. Those requests became the germ of the idea to keep pursuing the topic, and to specifically address care-giving professionals as a main target audience.
A.P.: What has your experience been like working with your photo subjects for the Graying of AIDS project?
K.H.: This has been an amazing experience over the years. It is still incredibly hard to find people willing to stand up and tell their stories, in the face of continuing stigma. One of the things I found challenging is that pretty much everyone who agreed to be interviewed has been living with the disease for many, many years, so they’ve had lots of time to reflect on their experience and come to grips with wanting to be publicly identified as HIV positive. Because of this, the project is more heavily slanted towards telling the stories of long term survivors and is missing the voices of people who are more newly infected. That said, I was able to interview an extraordinarily diverse group of people, and every single one of them had, in their own way, an incredibly nuanced, reflective and eloquent way of sharing their experience with me.
A.P.: What’s it like working with a team from different fields of expertise on this project?
K.H.: This is a total dream project for me. The support of the OSI Distribution grant allowed me to team up, first and foremost, with a researcher from the Public Health field, to take the stories beyond the realm of journalism and oral histories, and place them in a larger context. I love working collaboratively, shaping the direction the work is growing together with Naomi Schegloff, MPH, while also assuming the role of creative director of a team comprising people from so many different professional backgrounds. While I’ve had a longstanding history of working on the graphic design aspects of my HIV/AIDS work with Cliff Questel, this project has added Samantha Beech to adjust a WordPress template to our needs, Bob Sacha has given great advice on the multimedia editing front, Eugene Jho has tamed Naomi’s and my run-on sentences, and Sarah Bernstein is creating original music to accompany all the stories. It couldn’t get much better, honestly. Actually, it could – any future funding would assure that all these people eventually get paid what they’re worth.
A.P.: What do you hope your work accomplishes?
K.H.: I am hoping to contribute to a discussion that is just beginning to gain some momentum in this country. There are many voices gathering as we approach the thirtieth anniversary of the AIDS epidemic this coming June, to call attention to the fact that as a nation, we have to bring the issue of HIV back to the forefront of public consciousness. This is a preventable disease that is allowed to take much too heavy a toll on too many people’s lives – especially people of color and people of marginalized communities, and it is a disease of poverty here just as much as in the rest of the world. The only way to break the cycle of new infections is frank talk and open dialog, whether that is in schools, in churches and houses of worship, and perhaps just as importantly, among friends and families.
By focusing on the specific topic of older adults, The Graying of AIDS is actually confronting two epidemics, in a way: HIV and AIDS, of course, but also a cultural epidemic of ageism which renders older adults and the daily realities of aging in our country largely invisible. The reason so many people are initially taken aback by this project is because without realizing it, many of us have internalized the cultural messages that associate sexuality with youth and negate the sexuality of older adults. Depictions of Betty White as a sexual being on Saturday Night Live are comedic, somehow. But the need for companionship and human touch don’t go away just because we grow older, and many older adults – whether they have recently rejoined the dating pool because of divorce or the death of a life partner or relocation to a new community – find themselves negotiating new sexual relationships for the first time since the emergence of the HIV/AIDS epidemic. And many of them grew up at a time when you didn’t really talk about these things, you just sort of did them. Most people don’t really want to think about their parents or grandparents having sex, but if we love them and we want them to stay healthy, we’d better get over it and make sure they have the information they need to stay safe, whether they hear it from us, their peers, or their care providers.
To see more work by Katja Heinemann, visit her stock archive at Aurora Photos and her portfolio at Aurora Select.