Making the Change

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Facing the Faces of HIV, a New Florida Anti-HIV Stigma Project Rolls Out
by Alina Oswald

Dab Garner. Photo by Deeb Studios

How many ways can one tell a story? How many times? …How long until we fall asleep?

The story I’m talking about is the story of AIDS. For three decades and counting millions of people have been living it. They have been telling and retelling the AIDS story, while sharing their own experiences with life and the disease. Yet, are we still listening? Are we still eager to hear how it ends?

Thirty years is a long time to stay awake listening to a seemingly endless story. Thirty years is also a long time to continuously remaster the art of storytelling, keeping the AIDS story interesting and worth listening to.

It’s 2012, a Presidential election year marked, as many believe, by Doomsday scenarios. While the end of the world may (or may not) be near, the story of AIDS is far from over. Yet, in the midst of other more present and pressing issues—including the economic crisis—the AIDS crisis has continued to drift further down on many priority lists. The truth is that there are only so many ways to promote AIDS awareness, and send out AIDS education and prevention messages.

Yet, some see these issues not as obstacles, but rather as challenges to redefine the fight against HIV/AIDS. In that sense, “2012 is more reason to make [HIV] a bigger [issue],” comments Tom Liberti. The chief of the Bureau of HIV/AIDS for Florida Department of Health has been on the frontline, fighting the war against the pandemic since the very beginning. When we talk on the phone, he recalls poignant moments in the history of AIDS—the first cases, the time when children were kicked out of schools and adults laid off from their jobs because of their HIV status, first available medication and later on combination drug therapies, and present-day promising trials that may lead to an AIDS cure and/or vaccine.

In a time of drastic budget cuts, in particular affecting HIV prevention programs, Florida (which has the third highest number of HIV/AIDS cases, behind New York and California) is fortunate—several years back Florida’s legislature and the state’s African American caucus put some money into the budget for HIV/AIDS information and education. Some of this money made possible the We Make the Change campaign initiative and, with it, the Faces of HIV project.

“I’ve been directing the AIDS program here, in Florida, for a long time and decided that this year is an anti-stigma year,” Liberti comments, talking about the purpose behind Faces of HIV project. He explains that in order to reduce the number of new HIV infections and increase the number of individuals who know their status, we have to reduce related stigma because, in communicable diseases, stigma is a two- or maybe more-than-two-fold problem. Stigma can hurt public health efforts by keeping individuals from getting tested—for example, statistics show that young black gay men still get tested too late. “That’s gotta get better,” Liberti comments, “because we all know that the earlier you get tested, the sooner you get treatment, the higher the T-cell count and the lower the viral load. [In other words,] you get personal benefits from your health and you get public health benefits.”

Inside the Faces of HIV mobile art exhibit. Photo by Deeb Studios

Yet dispelling AIDS stigma is no easy task when some individuals’ feelings and beliefs regarding HIV/AIDS have roots so deep and so strong that no anti-HIV-stigma message can reach them. And yet….

Faces of HIV dares to make that change. The mobile art exhibit offers the opportunity to take a closer look at the face of the pandemic using multi-media—a breathtaking collection of images, videos and journals of the participants, individuals living with the virus whose stories revisit some of the moments that punctuated the history of AIDS. Thus, Faces of HIV tells the AIDS story in a new way, inviting the audience to become part of the experience. The mobile exhibit’s uniqueness is defined by its interactive approach through which it touches members of the audience and, maybe, some of those deeply rooted feelings.

The mobile exhibit kick-started in Florida’s capital, Tallahassee, when a gigantic truck displaying forty-by-fifty-four-inch participant portraits inside and out showed up at Florida State University campus, on Friday, January 13, and the following day, at the Governor’s Mall. Overwhelmingly well received, it attracted hundreds of visitors and grabbed media attention. Following the same format, next stops include Orlando—at the University of Central Florida on February 3 and next day in Downtown Lake Eola, Fort Lauderdale on March 9 and 10, Miami on March 23 and 24, Tampa on April 13 and 14, and Jacksonville, May 11 and 12.

To make it happen, Florida Department of Health reached out to Floridians living with HIV/AIDS. From seventy residents who felt comfortable enough to come forward and share candid stories, ten (with three more available on a rotating basis) were chosen to be part of the project. The selected participants received journals, which they kept for a month, had their pictures taken, and recorded videos, thus offering several ways of sharing aspects of their living with HIV/AIDS.

On-line and/or on-site, coming face to face with these survivors and their stories has an overwhelming effect. The visual aspect of the exhibit reflected in the exhibit’s size, and also message, is quite powerful. It wraps around us, the audience, making us part of its universe.

Faces of HIV also brings into focus the human aspect of the disease—and related stigma—emphasized by the exhibit’s mundane aspect, which is also displayed by the daily, hour-by-hour journal entries written in participants’ own handwriting. Adding to the human aspect of HIV/AIDS are videos, in which participants, which we get to know by their first names, share, in their own words, their journeys through HIV/AIDS, at times while trying to suppress a tear.

Each participant’s story helps piece together the mosaic that creates the more complex face of HIV. And as the audience, we can’t help but bond with the participants because this interactive art exhibit makes it crystal clear that participants, these HIV/AIDS survivors, can very well be our brothers and sisters, mothers and fathers, our friends, colleagues and neighbors, or mirror ourselves.

Among them, Dab Garner, founder of Dab the AIDS Bear Project, was diagnosed when the disease was still called GRID (Gay-Related Immune Deficiency). He has been an AIDS activist ever since. The AIDS Bear came to life as a companion to hospitalized AIDS patients placed in quarantine.

Another Faces of HIV participant is Anthony Johnson, a young activist. Diagnosed when HIV meant death, he tells a candid, powerful story of loss and self-discovery, of triumph in spite of all obstacles.

Three years ago this March, Anthony started BOLT, or Bring Our Lives Together, an HIV-centric social support group offering gay and bisexual individuals a safe environment, free of HIV-stigma. He also organizes a tri-county HIV support calendar that helps people find local support groups.

He’s survived it all by keeping a positive attitude. His secret? “I don’t let HIV control me and stay away from negative thoughts,” he answers, when we talk on the phone. “A lot of strength comes from the community, from watching people struggling with HIV or cancer, sleeping on the street or losing loved ones.” Nowadays, Anthony is writing his autobiography, starting with the moment of his HIV diagnosis.

Each participant offers a facet of the pandemic through a story of survival, not only related to HIV/AIDS, but to life in general. If we listen carefully, we may just learn how to become survivors ourselves.

Faces of HIV runs through July, hopefully longer, if the funding provides. The mobile exhibit may have started in Florida, but it can cross state lines and travel the country and beyond.

We Make the Change/Faces of HIV: www.wemakethechange.com; Dab the AIDS Bear Project: www.dabtheaidsbear.com; BOLT: http://bolt-ftlauderdale.ning.com; YouTube link to Faces of HIV: www.youtube.com/user/wemakethechange?feature=watch

Alina Oswald is a writer/photographer and the author of Journeys Through Darkness, a biography of AIDS. Contact her at www.alina-arts.com or follow her blog, Unconventional, at alinaoswald.blogspot.com.

February 2012