Stopping stigma, saving lives by talking — and singing — about HIV

T.K. Hampton speaking into a microphone
T.K. Hampton, a performer and HIV advocate in Nashville, Tennessee, wrote a musical about the urgency of ending HIV. Photo courtesy of Katie Jennings / New Canoe Media

A performer and HIV advocate in Nashville, Tennessee, T.K. “Thunder Kellie” Hampton works for Street Works, an HIV services organization and a key partner of the Vanderbilt University unit of the Fred Hutch-based HIV Vaccine Trials Network. He recently appeared in a musical he wrote and directed, "YOU Shall LHiV 2 Zero," at the U.S. Conference on AIDS. 

I’ve been HIV positive for 20 years. Treatment is prevention, so if I remain on treatment, then the likelihood of me giving someone HIV is zero.

About a month ago, I was reminded — I’d almost forgotten — that prevention also means preventing death. A 24-year-old kid died of AIDS. Dying of AIDS is like going to a grocery store and dying of starvation. There was treatment available, but because of stigma, he died. Stigma is when I have the medicine and I still don’t take it.

When I told his family what he was dying of, their immediate response was, “Don’t tell anyone.” And they wonder why he didn’t take his medicine.

In our own families, in our own communities, we have to stop the stigma.

I found out in October 1997 that I had HIV. I had tried to give blood [at my college blood drive]. They tried to contact me, but I was back home in Columbia, Tennessee. So they contacted the health department there. The health department told me over the phone that they couldn’t use my blood because I was HIV-positive.

My mother was right there. I was 21. My mom’s first response was, “We can’t tell anybody.” She said, “You have black skin. Then you add gay to it? Then you add HIV to it?”

I said, “I can’t live a lie. We’re telling everyone.”

I called my aunts, my uncles. Only one uncle wasn’t supportive. He said, “What have you gotten into?” I said, “It isn’t what I’ve gotten into, it’s what’s gotten into me.” Thanksgiving was at his house as usual. Typically, all the men sit together at a big table. He said, “We’re going to put the table in the garage this year.” It was because of me.

Telling everyone was hard. Once a week, the health department turned into an HIV clinic. I hated going there. Columbia’s a small enough town that everyone would know. A nurse there named Amelia told me about the Nashville clinic. Nashville is 42 miles north of Columbia. I went there instead.

I had to take 24 pills a day, at different times. It took me three years to really adhere to the meds.

Even then, I was trying to numb the pain of having HIV. I was in a car wreck that literally killed me. They had to bring me back. I broke three vertebra in my neck. I was John Doe in the hospital for 48 hours until my Mom and my two sisters found me. That’s when I realized HIV wasn’t going to kill me; I was going to kill myself.

I found church again. I became the choir director. Then someone in my church died of “cancer.” It was really AIDS. The pastor came to me and asked me, “Do you know what happened to him?” I said, “Yes, and someday I’ll die of AIDS too.”

So I wrote a musical about getting tested for HIV. When he was in Congress, Barack Obama had taken an HIV test to encourage people to get tested. I wrote the musical because I wanted to do something like that. I’ve seen a lot of people before me go. Seven of us lived in a house and hung out together, all gay black men. Only two of us are still alive. I just don’t want anybody else to get HIV. I don’t want anyone else to die.

When I was doing the musical, I couldn’t find anyone to tell the story about being HIV positive. Then I realized I could do it myself. It was the most moving thing I’ve ever done. The musical was called “You Shall LHiV.” My pastor spoke a few weeks later, and his theme was, “I may not be cured but I am healed.”

Then my mom died suddenly at age 57. I had just talked to her on the phone that evening. In the middle of the night, one of my sisters called to say she was gone.

To try to deal with the loss, I set out across the country. In the Castro [neighborhood in San Francisco] I came across an older white gay man walking around naked. I took a photo of myself with him, posted it on Facebook and wrote, “When I tell my story of being HIV-positive, this is how I feel: naked but unashamed.”

It didn’t go over well with my church. Churches are inclusive but not affirming to gay people. They were OK with my having HIV, but not with being gay. Within the African-American community, I’ve seen slow changes in some areas. However, the same stigma that killed that 24-year-old boy is still with us. It’s still a sin for you to be gay.

Today I work for Street Works. Last year, they wanted to do something for National Black HIV Awareness Day. I said, “Let me do a musical.” How do we get people on board with HIV? We make ’em dance, sing, laugh or cry. The new musical is called “YOU Shall LHiV 2 Zero.” We have the scientific and biomedical advances to get to zero transmissions, zero deaths.

My Facebook page is all about HIV. I’m a community leader. That’s how the cousin of that 24-year-old knew to message me. He said, “I think my cousin is going to die. Can you reach out to his family?” The grandmother was coming to pray over him. She didn’t know he was gay or had HIV.

I took the mother, the grandmother, the three sisters and the aunties into a room and said, “He’s not going to get better.” I am spiritual. I took the scripture of Jesus going to the Mount of Olives after the Last Supper: “Remove this cup, oh God.” God sent an angel to strengthen Jesus. 

I told the boy’s mother that God would send her an angel. I never knew I could be that angel.

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