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KC Photo Exhibit Takes Aim At Stigma Associated With HIV And AIDS

This Friday is National HIV Testing Day, first created almost 20 years ago to encourage members of the public to learn their HIV status. Since then, what it means to be HIV-positive has changed dramatically.

Individuals diagnosed as positive today can expect to live as long as they would without the virus, as long as they receive treatment.

But many HIV patients, especially in African American communities, don't receive the treatment they need, and health advocates blame that on the stigma associated with HIV and AIDS.

In Kansas City, a new art exhibition aims to erase that stigma.

Facing diagnosis

August 18, 2010, is a date Kaylon Sanders will probably never forget. It's the day he found out he was HIV-positive.

Because of a communication mix-up, he didn't hear the news in a doctor’s or counselor’s office. Instead, he got the news over the phone, while he was at work.

“That was very difficult,” Sanders says. “Especially for the setting, 'cause I actually shared my office with someone else. And so I’m like, ‘OK. Uh huh.’ You’re trying to be professional and not break down.”

He got in touch with his doctor, but it wasn't long before he was in denial about the seriousness of his condition. Like 40 percent of those who know they are HIV-positive, he didn’t follow the prescribed treatment regimen.

“I didn’t get on medication,” Sanders says. “My counts were fine, so I kind of blocked it a little bit. I knew I had it, I knew I was still healthy, so I didn’t kind of go forward with it.”

He did eventually get treatment and today he is strong and healthy. Now he works to help others overcome the emotional and social challenges associated with HIV.

Overcoming stigma

Sanders and nine other young, black, HIV-positive men are the subject of photo portraits in a gallery exhibition called “Visual AIDS” at Outpost Worldwide, a Kansas City production company.

Photographer and HIV/AIDS activist Duane Cramer, who is based in San Francisco, took the portraits in Kansas City.

“What these images do is show very strong, beautiful young men that look like other people in the community,” Cramer says. “They look just like you. They look just like me. They’re no different, but these people are standing up and standing out and really making a difference by putting their face forward with no fear and no shame.”

Rashaan Gilmore, the prevention coordinator at the Kansas City Care Clinic and organizer of the exhibition, explains that the stigma associated with being HIV-positive can be almost as terrifying as the diagnosis itself, driving many to deny they even have the virus and yet others to avoid getting tested.

“There is that moment where you ask yourself the question: What does this mean for my life? Will anybody love me? Can I be in a happy, healthy relationship? Will I be rejected by family and friends? Am I a pariah?” Gilmore says.

Sara Nelson-Johns, the Kansas City Care Clinic's clinical coordinator of therapy, is all too familiar with the fear and misinformation that can haunt patients, even in their own homes.

“I know people whose family make them use paper plates and plastic silverware, which is completely needless and has nothing to do with transmission,” Nelson-Johns says. “And when it happens, that person has a really hard time feeling like, ‘I’m O.K.’”

HIV And African Americans

Keith Irvin, who is pictured in one of the exhibition portraits, says that, while plenty of helpful HIV information is available, much of it does not resonate with those who need to hear it.

“A lot of the brochures and literature about it, you see mostly Caucasian males on the covers and the pictures and interviews that they have,” Irvin says. “You don’t see a lot of black men that are 1) educated about it, and then 2) that are proud to educate others about it.”

The disproportionate impact of HIV on black men is made graphically clear by the statistics. 

In 2009, for the first time, the number of new cases among African-American men surpassed new cases among white men. In 2010, the rate of new infections among black men soared to nearly eight times that of white men.

For many black men raised with a cultural distrust of health providers — men like Kaylon Sanders  — the problem is that much worse. 

“I didn’t go to the doctor that often,” he says. “My dad was not a ‘doctor person.’ We didn’t do dentists, eye doctors, anything like that. ‘Ah, you’re fine. Take a Benadryl. You’ll be alright.’”

Beyond cultural influences, Nelson-Johns says, other factors affect the way people approach health care. 

“You’re less likely to have access to medical care dependent on economic class, education," she notes. "So the lower we go on that, the less someone is health literate as well. Even just the basics, about how to take care of one’s body may not have been taught to them because their lives have been really tough.”

The situation is further complicated in Kansas City by the scarcity of local therapists or care providers of color. Gilmore says having a professional who shares the patient’s race or background can make a huge difference.

“It can often be the difference between life and death on both a physical and mental level. You want to know that the person who’s providing your treatment and care understands where you’re coming from. Not just what got you into that office that day for treatment, but also what it means to have to go back into your community and to your family and deal with those cultural dynamics that will impact your life day-to-day,” Gilmore says.

Visual AIDS

Credit Alex Smith / KCUR
Portrait subjects Keith Irvin and Kaylon Sanders pose with exhibit organizer Rashaan Gilmore.

On a recent afternoon, Gilmore walked through the photo exhibition, pointing out the portraits he hopes will speak to young black men.

The images range from men in ball caps and sneakers to one sporting a dress and high heels.

Looking at his portrait, Sanders admits his first reaction was a little mixed.

“Only because I’m critical about my own photos!” he says.

Then he takes a closer look.

“I could see the courage and the bravery that maybe I didn’t even know I had, but it did come off on camera,” he says.

Can a roomful of photos really make a difference in the way people see HIV? Can it break through the stigmas and stereotypes and connect with young black men?

“I think it already has,” Irvin says.

Irvin says he’s heard from both friends and strangers, thanking him for presenting himself — and his diagnosis — to the world.

Visual AIDS is on display at Outpost Worldwide, 1919 Baltimore, Kansas City, Mo., through the end of June.

As a health care reporter, I aim to empower my audience to take steps to improve health care and make informed decisions as consumers and voters. I tell human stories augmented with research and data to explain how our health care system works and sometimes fails us. Email me at alexs@kcur.org.
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