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AIDS: Activist and artist Jim Carey: Looking back at the life-changing moment of testing HIV-positive
by Ross Forman, Windy City Times
2011-12-21

Jim Carey. Photo courtesy of Carey


Jim Carey was an undergraduate student at The Ohio State University in 2005 when, as part of a class assignment, he had to rewrite an existing behavior change intervention.

Carey chose to encourage people to get an HIV test.

"I hadn't been tested for several years, so I thought it would be a great idea to get a test," Carey recalls. "That way, I could tell everyone it was easy; you get your results in 20 minutes, etc.

"When the doctor led me back to the exam room to disclose my results, I was relieved when the door was opened and the room was empty. I thought for sure, if I was positive, a social worker or counselor would be waiting. The doctor had me sit down and said, 'I have bad news … your test was negative.'"

Confused, Carey asked how that was a bad thing.

The doctor also looked confused, and then corrected himself.

"I'm sorry … I meant, you are positive," he told Carey, who was shocked.

"My first reaction was, this couldn't possibly be my test. But once the test was confirmed, I was devastated. I was one semester away from graduating college and I didn't know how I would go on and finish. But, I did. In fact, I went on to achieve straight A's for my final semester and graduated with honors."

Carey has never forgotten that crushing moment. He always remembers the date—Nov. 15, 2005—and everything associated with the day that changed his life.

"When I was first diagnosed, I didn't know how to tell anyone for a few months," Carey said. "Of course I told my amazing partner Kevin immediately, and he was, and still is, my rock. I wouldn't be where I am today without his support." Carey has been in a relationship with Kevin for more than nine years. Kevin is HIV-negative.

"Gradually, I began to reveal my status to different people in my life," Carey said. "I have experienced every possible reaction from friends and family: sadness, love, anger, rejection, support, confusion and fear."

Now 35 and living in Chicago's Uptown neighborhood, Carey is a Training Specialist at the Midwest AIDS Training and Education Center (MATEC), a federally funded center providing AIDS and HIV clinical training and support to healthcare professionals. MATEC's mission is to enhance the capacity of HIV clinical services and improve quality of those services for people living with HIV in the region.

In addition to his training responsibilities at MATEC, Carey also works for Project WISH, the Chicago branch of the HIV Vaccine Trials Network. He is the community educator, so his role is to increase community awareness of HIV vaccine clinical trials in Chicago.

"While teaching at MATEC, I realized that one of the most important ways to combat the stigma of being HIV-positive is to be honest about my own status," said Carey, who grew up in Peoria and has been living in Chicago for five years.

"How could I expect others to be comfortable in sharing their status when I was selective regarding who I told? Being upfront, open and honest about being HIV-positive makes me feel better about myself, and I certainly hope it makes others realize there is nothing to be ashamed of. I am still surprised how many people in 2011 think that, by being HIV-positive, they are being punished for whatever behavior resulted in their infection. My reaction to that is, 'HIV is a virus … did you feel that you were being punished the last time you got the flu? The flu is a virus, too.' My answer is always, 'No,' and we're not being punished either.

"Reducing the stigma around being HIV-positive is now part of my lifelong goal. Honesty and communication are necessary components of any relationship—romantic, friendship, or otherwise. Even though disclosing my status in such a public manner seems a bit daunting at times, I do it with joy knowing that it may inspire another human being to do the same. I always compare coming out as HIV-positive to coming out of the closet a second time. Once again we are faced with rejection, discrimination and ignorance. On the flip side, we are also faced with our own humanity, kindness, love and support."

Carey is truly taking his HIV status to the world. He is presenting an art show of his works, all centered around living with HIV, at the Center on Halsted. The show opened in November and runs through Jan. 3.

"I am excited for the showing on many levels," he said. "First, living with HIV is not a walk in the park by any stretch of the imagination, but it's no longer the death sentence it once was, either. Expressing myself through my painting has always proved a great outlet for my emotions. Even when I was a child, I used to draw, color or sketch when I was happy, stressed out or emotional in any way. This habit carried over into my adult life. While I wasn't always a prolific painter, after being diagnosed as HIV-positive, I found a renewed devotion to my craft.

"I am thrilled to finally get to show all of Chicago my art work. Although I have never received any type of formal training in art, I have always dreamed of having my own gallery show. I have many friends who are also artists and every time they had their own show I thought to myself, 'I would love to have that happen to me someday.' Now is my opportunity, my time to shine. I get to show off my talents and get to show all of my friends exactly what I do in my free time."

Through art, Carey wants to educate about what it's like to live with HIV.

"I hope that, by offering my perspective on living with HIV, I can help alleviate the stigma and discrimination surrounding being positive," he said. "Even in the gay community, there is still a strong 'us versus them' mentality regarding HIV. A lot of people say, 'Doesn't everyone know better by now?' My response is, 'NO … they don't.'

"Education is always a great first step in any process, but, if you don't impart skills on how to change behavior, it simply won't happen. The example I always give when I am training new HIV Test Counselors is this: 'How many people quit smoking just because the Surgeon General put that warning label on the side of cigarette packs?' Not many. Most people know the dangers inherent in smoking, but, if you lack the skills to quit, it probably won't happen.

"I am hoping to show that, in living with HIV, I am doing just that … LIVING. If I can show just one person that there is not one face to HIV, but many, then I have been successful.

"I would love to think that my show can inspire hope … hope for anyone living with HIV, hope for an eventual cure, hope to bring the community together, hope that you can not only live with this virus, you can THRIVE with it. I often refer to this as making a positive a positive. I might not have started painting again if I wasn't diagnosed. I have always been a fighter who refuses to give up. When most of my family rejected me for being gay, I kept fighting. When I decided to go back to school, I refused to settle for less than the best in myself. Finding out I was HIV-positive was no different—I knew I had to find a way to let this make me stronger, and I believe I have. Everything we experience in our lives makes us who we are today. Living with HIV is no exception."

Carey said selling any of his artwork will be a bonus; he's more interested in educating and, even if it's just one person, making him/her feel comfortable with their HIV status.

"Seeing all of my pieces together in one space is always an emotional experience for me," Carey said. "I revisit where I was emotionally when I created each piece. It's also a gift to document my own growth by seeing older and newer pieces together."

Carey, who has earned a Master's Degree in public health, said one of his favorite presentations he delivers for work is titled, "Drawing on Our Pasts to Create Our Present: Art Therapy and HIV." He then discusses his diagnosis, the creation of his art and hopes to instill hope in others living with HIV.

"HIV has opened my eyes to intolerance, rejection and disparity in my own community," Carey said. "Being HIV-positive has made me want to fight for those who are under-represented or unable to make their own voice heard.

"Professionally, I am determined that no one else will ever have an incompetent doctor or any other professional deliver their test results in an incorrect or insensitive manner. I believe that, living with HIV, lends me credibility as a Training Specialist, as I have a unique perspective from others who have just received the educational component. Having the education and the experience combined puts me in a unique position to represent both the community and healthcare professionals. Finding the intersection of these two populations may be the key to successful prevention and, eventually, a cure for HIV."

Voices of My Choices: The Art of James Carey runs through Jan. 3, 2012, Center on Halsted.


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