Not Telling A Story
Advocate Bryan C. Jones Wants to Change the Narrative About HIV
by Mel Baker
Photographed Exclusively for A&U by Sean Black
When I interview Bryan by phone from his home in Cleveland, he is full of insight, strong opinions and energy. I spend a lot of time trying to lock down the timeline of his story, but he’s not so keen on the idea of another profile of him as the “ghetto activist.”
“I hate it when people say, ‘Brian can you tell your story?’ I don’t have a damn story. I have chapters of my life I haven’t lived yet, so why do you want me to tell ‘a’ story?”
I soon realize I can’t profile Bryan and his current activism by simplifying his life into the narrative of “one man’s triumph over hardship.” Instead his journey moves back and forth, front ways and sideways, down and up.
Many Chapters
On World AIDS Day 2018, Bryan is in Ottawa with Canada’s Minister of Health as the nation becomes the first to endorse the Undetectable = Untransmittable (U=U) campaign. The culmination of a long campaign promoting the fact that people under treatment with undetectable HIV can’t transmit it to others.
In 1984, Bryan is a senior at Florida A&M University, but fears he may have the disease killing gay men. To avoid anyone finding out at college, he travels all the way to Atlanta to be given a series of tests. A few weeks later he gets a call telling him he has “gay-related immune deficiency” (GRID) and only six months to live, before the doctor quickly hangs up.
In 2017, Bryan and more than 180 protestors are arrested inside the U.S. Capitol to protest the Republican efforts to gut the Affordable Care Act.
In 2008, Bryan has survived cancer in prison. He’s being treated for HIV, but as he leaves his prison cell, he’s given HIV meds that he knows won’t work on his virus. At the bus station, he drops the useless pills into the garbage, knowing that he will have to take care of his own health.
In 2019, Bryan is making plans to return to South Africa, to help people living with AIDS and share his experiences as a long-term survivor.
In the late eighties Bryan is living his dream as a performer. He converts to Islam, as his sister had done decades earlier, but like so many at the time he finds little solace in his faith community. “Because, if you had AIDS, it was obvious that you did something that wasn’t Islamic.”
In 2015, he is invited to join the People Living with AIDS advisory board of RAHMA (Reaching All HIV Positive Muslims) an organization dedicated to helping Muslim’s infected with HIV.
*
It’s as if HIV, stigma, racism and homophobia have been like a brick shattering the mirror of Bryan’s early self-image. Like any committed artist, he has collected those mirror pieces and turned them into the art of his activism, using each piece to reflect something he has learned, illuminating the way for other’s facing HIV.
Silence Equals Death
Bryan’s activism has always been about solving the problems he sees right in front of him. “When I moved to Atlanta [in the 1980s], I was doing activism before people knew what it was. Taking care of people and rallying around friends.”
ACT UP’s motto “Silence Equals Death” was a demand for government action and a cry for compassion. For Bryan and many of his friends, silence equaled the twin deaths of stigma and isolation. “Even though we worked to take care of each other we never talked about the ‘condition.’ Little code words; you know, they’re sick, he went to the hospital. I was diagnosed, but I would never tell anyone about it because I knew my number was up soon.”
Despite his early death sentence by doctors, life went on. ”I did a lot of theater. I toured the country and did chorography for recording artists, toured in Japan, did concert dance and a couple of shows in New York. I had a fairly extensive career.”
Even as his professional life flourished, those silent years were filled with the pain of stigma and isolation. “I was hiding waiting for somebody to discover me. I just didn’t want anyone to know. I just wanted to die.”
Bryan understands why tongues were tied. “Just because somebody tells you, you have an HIV diagnosis, doesn’t mean they’ve accepted it. That’s hard for people to understand. I [they] don’t know how to do this. Consequently it affects how we move through life. We isolate then we mask it and self-medicate.”
By the early 1990s, Bryan became self-destructive. “For that moment with the substance I felt like somebody loved me. If I had drugs somebody would treat me with respect and dignity, so I thought.”
“When my number didn’t come up—I’m still thinking I’m going to die fairly soon here—so I decided I would go to prison, so I ended up in prison.”
Bryan says the pain of being in and out of prison slowly forced him to change his relationship with life and with HIV. “I had cancer three times and the worst was a Stage IV cancer in prison, with one leg chained to a hospital bed. So I thought I’m still not dead and I told God, this is not funny. So then I decided I would not filter my words.”
Refusing to hide the fact that he was a person living with AIDS (PLWA) became a way for him to mend his broken self-image. “It was around ’98 that I started to be open about my status. I was [still] in and out of prison. I started to do glimpses of advocacy. I still didn’t have the self-esteem, my self-acceptance yet.”
Part of his advocacy was for himself. Discovering that he knew more about HIV than the doctors treating him required him to advocate for and educate himself to stay alive.
One Door Closes
Bryan walked out of a cell for the last time in 2008. Over the next few years he would become involved in a whirlwind of activism.
Back home in Cleveland, Ohio he realizes that other PLWAs weren’t being helped by the AIDS service organizations. In 2011, he organizes Gentleman’s Quarterly, Positive Men Doing Positive Things.
“I spoke with the hospital about doing a support group that met quarterly. A lot of people had begun to isolate; they didn’t want to go to dinners or support groups because they felt like they didn’t know anybody. What made my group unique from other groups was that I would call people personally so they knew they had one person to look for when they got there.”
The year after leaving prison he takes part in the U.S. Conference on AIDS in San Francisco, where one of the topics was the criminalization of people infected with HIV. “I realized there were a whole lot of people doing this work. The way I looked at it, people were talking about my life and it changed my whole life.”
Many states still criminalize people who are infected with HIV and fail to tell a sex partner. Bryan says Ohio’s law is still on the books. “We see at least four prosecutions a year. It’s hard to tell how many go to trial, versus how many are plea bargained out.”
Ohio’s laws are often used against transgender people and sex workers. “The laws are not about transmission, the laws are about not disclosing before anything is inserted into any orifice. You can even be prosecuted in Ohio for loitering after receiving a positive diagnosis.”
Bryan became active in the HIV decriminalization movement after the 2009 conference. “I went back to my city and started calling [the Center for] HIV Law and Policy, asking them to come to Cleveland. There was no conversation in Ohio, to my knowledge, around modernizing our laws. I bugged them for two years and finally we were able to mobilize Ohio. Now we have the Ohio Health Modernization Movement, we’re finally starting to see some headway.”
Art = Life
Bryan’s activism helped him reclaim his life, but he also reclaimed his art with his one man show AIDS, I Die Slowly, which he performed at the International AIDS Conference in Washington, D.C., in 2012. He describes the work as; “an intimate show weaving together several characters, songs and narratives of the positive journey of Bryan C. Jones. He explores the issues of addiction, childhood, honesty and moving on with life, no matter what it throws at you.”
His work with Gentleman’s Quarterly, HIV decriminalization, and his own journey spurred him to reach out to people with even less connection to HIV service organizations. “DIRT stands for ‘Direct Inspiring Reachable Teachable’ which started in 2013, when I organized a national advocacy and leadership summit here in Cleveland thru the Campaign to End AIDS. I wanted these people who were coming in from around the country to be able to understand what was going on in a neighborhood.”
That neighborhood was Garden Valley, burdened with entrenched poverty and crime. “I said if this is our mission we’ve got to be able to go into these communities and teach people how to advocate, how to do outreach and prevention. Black folks have to have real conversations that are stripped of all pretenses, all the flowers and all the greenery, all that’s gone. It’s down to the bare essentials. They’ve got to have a real conversation that looks like them, talks like them and lives like them.”
Bryan and his fellow organizers came up with a way to help people as they were reaching out. “In Garden Valley, Jan Ridgeway started putting condoms in the food bags, which was controversial. We would start passing out food at 11 a.m., but people would gather at 7 a.m. where we brought them in for coffee and donuts and had open discussion about HIV and AIDS. I remember one woman who said she would just get tested to get me to shut up.”
Reaching Out to the World
The work at DIRT led Bryan to do outreach in Africa. “I had applied to go to the international conference in Durban, South Africa with my DIRT advocacy. We bought the tickets, but days before we leave I got a scholarship. We spent two weeks volunteering in St. Lucia, South Africa, where we were in the bush talking with people, washing people’s clothes, changing their bandages. I met a woman living with HIV and leprosy and I thought it was something that was this old biblical condition, all the stigma was just [foisted on] this one person. So the experience was life changing. It’s amazing in order to appreciate what we have here in the United States, a clean bandage an antibiotic cream can make a person’s whole week. Going to other places and saying I’ve been thriving with AIDS for thirty-five years, telling people that alone is a powerful form of advocacy in itself.”
Writing Chapters, New Mirrors
In the end, Bryan doesn’t want us to focus on the hardships of his journey. “I’m not here for your amusement so you can see my horror story. I don’t need you to feel sorry for me, I don’t need no one to save me, I can save my damn self. I don’t need a hand out, I need a hand up.”
Bryan’s fierceness is a reminder that we all lose when we try to get people to just “tell us a story,” failing to see the many mirrors they offer us to reflect on the work we all have yet to do.
Mel Baker is a broadcast journalist and former LGBT and anti-nuclear weapons activist. He is married to artist Leslie Aguilar and lives in San Francisco, California.