Fighting Stigma One T-shirt at a Time
(Respectfully plagiarized from Jeff Berry)
A few weeks back, a press release from the AIDS Taskforce of Greater Cleveland (ATFGC) came across my desk announcing their “Anti-Stigma Campaign.” CEO Earl Pike and the staff of ATFGC came up with the idea of distributing red t-shirts with “HIV Positive” on the front and asking people to wear them throughout the day on March 26 and then record their experiences. This would be an opportunity for both HIV-positive and -negative people to fight the stigma surrounding the disease by expressing their solidarity with those living with it. Thousands of people in South Africa have done it; Annie Lennox has done it, why not Cleveland?
I was inspired and called Rebecca Strong at the ATFGC to see if we could get some of the shirts for TPAN, expecting that all 35 of our staff members, as well as some volunteers and/or clients, would want to join in such an important effort. I mean, rarely does a day go by here that the word “stigma” isn’t spoken or written, especially as it affects the African American community. Even though none of us thought we could change the world by wearing a t-shirt for a day, maybe we could cause a baby step of shift by being willing to confront it. Rebecca reported that in Cleveland, more than 400 people had ordered shirts.
Ten TPAN staff members and three other folks ended up ordering t-shirts – five of them are HIV-positive, one is African American, four are women, and eight are HIV-negative. I was disappointed, yes, but I guess everyone has their own relationship with stigma and I won’t presume to judge those who chose not to participate, whatever their reasons.
Instructions were given as to where to post stories of the day, thoughts, feelings, photos. Not being one who knows (or wants to) how the whole Facebook thing works, I’m writing about it here, as well as sending Rebecca a copy.
My day started with a trip to a doctor's appointment in a large medical building next to a hospital. Unfortunately, it was too chilly to go without a coat, but I took my coat off as soon as I got inside and stood waiting for the elevator. It was early in the morning, so there weren’t a lot of people around, but the two who joined me looked at me, at my shirt, and then looked away. I smiled, but got no response.
When I got to the doctor’s office, the receptionist did a bit of a double-take and then said, “I didn’t know you were HIV-positive!” I explained that while I’m not positive myself, I was wearing the shirt as a way of expressing my support for those who are and I told her about the concept of the t-shirts. She was interested and said, “Oh, I wish I’d known! I’m sure everyone here would’ve wanted to participate!” Knowing that they do see HIV-positive patients there, I told her I hoped it would become a national, annual event and I’d keep her up to date.
The best moment of the day came as I was waiting for the elevator after my appointment. I was joined in the hall by a well-dressed, attractive black woman, a bit younger than me, who did the look-look away thing, but when the elevator came, she entered and held the door for me. I should explain that I walk with a cane due to severe hip pain, so she’d not only scanned the t-shirt, but the cane as well. As we began to descend, she cleared her throat and said, “Excuse me, but are you disabled because of the HIV?”
My immediate thought was, “Disabled?!?!” But then I realized she’d put the cane and the t-shirt together in her mind. I smiled and told her, “No. I’m not HIV-positive and the cane is only until I get my hip replaced next month. But there is a growing concern about HIV-positive people experiencing bone loss and weakness due to the medications they take to control the virus. People younger than me are having hip replacements, as well as experiencing other things that usually come at a later age.”
She looked perplexed and responded, “I had no idea! What a shame.” And then the elevator opened and we parted.
I was glad she’d had the nerve to ask and I was glad I’d had that “teaching moment,” but it also underscored something I’ve run into many times over my years of working in the HIV/AIDS field – we are an insulated, and somewhat self-segregated, community. Negative or positive, we stick together in our comfort zones and rarely go beyond the confines of our known quantities. The “outside world” doesn’t know us, either the positive people or the negative ones who choose to be in their world. Many of the outsiders cannot understand why anyone who’s not HIV-positive would want to work with and for people who are. They have incomplete and incorrect ideas about how the disease makes people look, how it is managed, how it’s transmitted, and how it can be prevented. It’s because of those ideas, and the fear they inspire, that stigma and discrimination exist and thrive. Unless we are willing to own the illness or our allegiance to those who have it, stigma will never be defeated.
Thanks to the dedicated people at ATFGC for initiating this – I hope we can keep in touch, perhaps draw other organizations in and plan to expand this event nationally.
I may be naďve, but I have high hopes for next year’s Anti-Stigma Day.