Positively Aware’s A Day with HIV Photo Campaign Battles Stigma
Although treatments for HIV have greatly improved and the virus is no longer the terrifying death sentence it was in the 1980s, the stigma of HIV continues to hamper education and prevention efforts. On September 21, Positively Aware invites everyone to participate in A Day with HIV, a photo campaign to challenge this stigma and bring us together as a global community facing a common challenge.
"The stigma goes beyond having HIV to looking like you have HIV. It’s very deep, very pervasive. It goes to issues of shame and being found out," said Positively Aware Editor and Director of Publications Jeff Berry. Positively Aware is a publication of Test Positive Aware Network (TPAN), a non-profit service organization based in Chicago working to empower everyone living with HIV/AIDS, and those at risk of infection, to live open, healthy and productive lives.
A Day with HIV, now in its third year, is an education and awareness campaign that is part of their overall program to provide opportunities for peer support, health service resources and comprehensive educational information. Beginning in 2010, people were asked to submit a photograph that captured the impact of HIV on their lives, all on the same day. These images are a powerful visual demonstration of how people live with HIV and how it affects their lives. They can help to battle stigma by providing support and information about HIV, and create a sense of community that can be reassuring.
"The idea is, if they’re going to be okay, I’m going to be okay too," Berry told EDGE. He hoped that people without HIV would also take part in the campaign, saying, "I think that will reduce some stigma. You can support tearing down those walls of stigma by not being afraid of being supportive and by being public about supporting people living with HIV."
Stigma plays a role in so many aspects of prevention. People don’t get tested because they may be afraid to be seen seeking services or to be associated with a gay service organization. The effect of stigma doesn’t end there. Once treatment begins, it’s very important to keep taking medications on a regular schedule. People can skip their dose because they don’t want anyone asking questions about their medications.
The fear and shame associated with being HIV-positive are a large part of the reason we’ve continued to see so many new infections in men who have sex with men in the United States. A Day with HIV is a way for us all to contribute to fighting this stigma and bringing HIV past shame into awareness and acceptance.
Photos will be coming in from around the world and across the United States. In Seattle, Washington, EDGE spoke with Michael Louella, a participant from 2010, to hear his views on A Day with HIV. The picture he took still inspires him.
"We have miles to go and it only seems like we’ve taken five steps," said Louella. "That’s why I took this picture. It was an off-the-cuff snapshot, fleeting and ephemeral. It felt like a battery was being recharged when I looked at this picture, from my picture being among all the other pictures and reaching backwards to previous years and forward to years to come. I love looking at those pictures."
Louella knows the world of HIV prevention well. He has worked as the outreach coordinator at the AIDS Clinical Trial Unit at the University of Washington for the past 12 years. He’s seen the effect that stigma continues to have on HIV prevention and education in the community, and hoped that the campaign would make things better.
"I hope The Day with HIV project can help alleviate the stigma for someone, whether they’re positive or negative, to be seen and associated with the word HIV," said Louella. "It’s going to take some brave people who are going to face being shunned. We need everybody to be willing to step up and be an advocate, a visual advocate, and be willing to be seen."
The Day with HIV campaign is a way for everyone to contribute to taking apart the stigma of HIV. Without eliminating fear and shame, our efforts to counter this disease face a steep uphill battle.
"Don’t be afraid to be associated with the term HIV. We need to make a space to make it okay again," said Louella, who urged all to consider taking part in the campaign.
For more information, visit www.adaywithhiv.com