About eight years ago, Curtis Lipscomb attended an HIV/AIDS program in Detroit. As the founder of KICK--a nonprofit that serves Detroit’s African American, HIV-positive community--Lipscomb had attended many such gatherings before. But this meeting in 2005 was different.
"Most African American gay men--especially those with HIV--are isolated and live in fear," said Lipscomb. "But I distinctly remember seeing Tony Johnson in that room. He wasn’t like the others. He was very confident and full of faith."
The two became immediate friends, joining forces in KICK’s mission to create a stigma-free, safe space for LGBT African Americans who are HIV-positive. Johnson was so taken by the mission, he started catching the bus three days a week to manage KICK’s calls and to become an intake specialist.
Johnson, 47, is disabled and lives on a fixed income. In 1993, he discovered that he was HIV-positive, but the virus has been undetectable in his blood since 2004. "I’ve come to terms with it, but I can’t believe that there are still new cases being diagnosed," he said. "If I can save one person from getting it, it’s worth it."
Lipscomb quickly discovered that he had not only gained a friend, but a valuable ally in the fight against AIDS.
"When you are in crisis and you call KICK, you get Tony--a real, warm, caring person to help guide you," said Lipscomb, whose organization receives no public funding. "He’s the frontline person for our organization, and the key to our development."
Eight years later, Johnson is still riding the bus to work at KICK three days a week. What makes it remarkable is that Johnson has never been paid a dime.
Leadership through humble service
Don’t bother talking to Johnson about his leadership in Detroit’s African American, LGBT community--it would only embarrass him. He’s more interested in talking about service.
"I decided that I can’t stay at home and do nothing," said Johnson. "I have to get out and help others."
He not only volunteers with KICK, but he also serves at the United Sisters of Charity soup kitchen in Highland Park twice a week. He is also one of the founding members of a support group for HIV-positive veterans.
"I was despondent three years ago when a social worker referred me to the support group," said Sidney Skipper, a veteran and retired medical technician who is both HIV-positive and bipolar. "I had given up on everything. But Tony helped me realize that when you help others, you find your voice and realize you have something to say. When you help others, it lifts you up as well."
The difference between Tony and most people, Skipper added, is that he isn’t in it for personal gratification. "If you’re volunteering to seek reward, you’ll quit after awhile, and move on to something else," said Skipper, 60. "Tony doesn’t seek reward. He’s in it for the long haul."
Lipscomb agreed. "You can’t have a movement without people willing to give their time and talent to the cause," he said. "Tony doesn’t need his shoulders brushed off or his collar popped up. He comes from that spirit."
What makes him tick?
The drive to serve others seems to be natural for Johnson, but it’s derived from a lifetime of struggle.
The oldest of three children, Johnson was raised on Detroit’s west side by his mother and grandmother.
"I never had a coming out," Johnson, who announced his sexual orientation to his family at age 23. "They said that they already knew. I wondered why I hadn’t gotten the memo!"
But that doesn’t mean that he didn’t suffer the same kind of backlash that LGBT people often experience in the black community.
"I knew I was different from the age of 9," said Johnson. "I remember one of my grandmother’s friends talking in another room. I heard him say, 'He’s going to be gay.' The way he said it, it was as if I was nasty or dirty. My grandmother said, 'That’s my baby. If he is, he is.' But I was hurt. People don’t realize the ramifications of what they say to children."
As he grew up, Johnson pretended to be straight to make life easier. In high school, he dated a girl from another part of town.
"Her father said, 'My daughter isn’t having sex until she’s married,'" said Johnson. "Well, that was fine with me."
In 1984, Johnson enlisted in the Army in order to save money for college, but mostly to get away from his family. "I wanted to explore who I was," he said, "but I went out of the frying pan into the fire."
He wasn’t prepared for the physical rigors of military basic training. And the taste of independence made it harder for him to live an inauthentic life. By the time he left the service three years later, he was ready to live independently as an openly gay man. But the pull of family was too much.
In 1987, his grandfather got ill, and it was assumed that Johnson would be the one to take care of him. "Sometimes family members assume that because you’re gay and you don’t have kids, that you are always available to babysit, or give them money," said Johnson, the oldest grandchild. "They think you don’t have a life."
Then, in 1993, Johnson faced his first major health crisis. "I found out that I was HIV-positive," said Johnson, whose partner at the time stood by him. "I was devastated. I thought people would be able to read it on my face."
As the person who was used to giving to others, Johnson found it difficult to lean on others. But he found that he had many friends and supporters. His boss noticed his medication in his cubicle at work. "Her friend had died from HIV and she knew what was happening to me," he said. "She became my ally."
In 1999 at age 35, he suffered a stroke. His boss paid his insurance co-pay for several months as he recovered. He was never able to go back to work. Seven years later, he had a second stroke that left him in a coma for two months.
As he battled back to health, he tried to make sense of all of his of life. "I believe that God left me here for a reason," he said.
That reason, he believes, is to make life better for others. That’s what drives Johnson to volunteer as dependably as if he were earning a paycheck. That’s what pushes him to share little gifts with his fellow bus riders, or a joke with the people in the soup line.
"At the soup kitchen they say that I’m always so happy," said Tony. "But you have to laugh to keep from crying. If they had to walk one day in my shoes, I don’t think they could handle it."
Video shot, produced and edited by DETROIT LIVES!
Desiree's Cooper's story first ran in Between the Lines. Model D's media partner on this project.