Donna Hylton still remembers the first AIDS-related death she encountered at Bedford Hills Correctional Facility. It was the summer of 1988, two years after she had arrived at New York's maximum-security prison for women. She was sitting in the prison yard when she learned that her friend Fat Baby was dead.
"We called each other by nicknames," Hylton explained to TheBody.com. "In prison, that's how you build community and connect." Fat Baby's nickname came from her baby face, sweet disposition and chunky figure. But two weeks before her death, Fat Baby began wasting away, rapidly. She went back and forth to the prison's medical clinic. One day she was locked in her cell during count time, when prison staff count each and every person in custody. Fat Baby must have lain down for a nap. She never woke up. Later, Hylton and others learned that Fat Baby had HIV and had died from a related complication.
"After that, it was like a domino effect," Hylton recalled. In those early days, death seemed to come every week. "We were waking up the next morning and some of our sisters were dead in their cells." Those deaths were all AIDS-related, causing fear to spread throughout the prison.
Prison practices didn't help stem the fear or combat the ignorance. Medical staff frequently refused to respond to calls for help. When they did, they arrived in full protective gear, causing the women to question whether they too needed protective clothing around those who had HIV.
"People were terrified of getting sick," recalled Kathy Boudin, who was also imprisoned at Bedford Hills. In the confined prison environment, women would refuse to sit next to those they believed were HIV positive. "If a person [who was believed to have HIV] left a pack of cigarettes, you wouldn't touch their cigarettes. And everyone in prison wanted cigarettes. Nobody knew for sure who was sick. People were responding out of fear."
At the men's prison in Auburn, New York, that same fear prevailed, frequently leading to men setting fire to the cells of those believed to have HIV. Prison administrators responded by placing people with HIV in solitary confinement, where they spent 23 to 24 hours a day locked alone in a cell to prevent them from being attacked.
In 1986, Kuwasi Balagoon died of pneumocystis pneumonia, a common infection among people with HIV, less than two weeks before his 40th birthday. His death propelled David Gilbert and Mujahid Farid to begin contacting outside organizations to learn more about HIV and AIDS. They met with prison officials and gained permission to visit those locked in solitary because of their status. They walked the track with others in the prison's yard, sending the message that these men were protected. They also began holding 15-week courses to combat stereotypes and educate others about HIV and AIDS. That was the start of PACE -- Prisoners for AIDS Counseling and Education.
Combatting ignorance and stigma was a slow process, recalled Farid. "Even people who were participating in our training sessions -- afterwards, I saw them say things and do things as if they hadn't been there." Still, PACE participation was high, with 15 people attending each course. Slowly, attacks began to fall off. By the time Farid was transferred less than two years later, PACE had convinced prison officials to let people with HIV or AIDS out of solitary.
At Bedford Hills, after years of requesting permission, a group of women, including Boudin, Hylton and Boudin's co-defendant Judith Clark, were allowed to organize the AIDS Counseling and Education (ACE) program.
"ACE changed the culture in the prison," Boudin recalled. "It changed the culture because it was about people coming together -- some were HIV-positive, some were not. But we all were saying, 'We have to do something about the crisis where there's a lot of fear. If we don't do it, no one else will do it.'"
Through ACE's education efforts, women learned how HIV could be spread -- and how it could not. "You can breathe the same air," Hylton said. Their efforts also wore away the fear and stigma. "We let people know that it was okay to take care of a person with AIDS," Hylton remembered.
At the same time, the culture shift empowered more people to talk about being HIV positive. "By saying they were HIV positive, they were facing head on the possibility of tremendous cruelty," explained Boudin. "They were friends with people, and they [their friends] couldn't reject them as easily." The fears and misinformation were replaced with what Boudin described as "the shared experience of being in prison and knowing that your friend had an illness for which there was no cure."
AIDS education efforts weren't limited to New York State prisons. Laura Whitehorn spent 14 years in various federal prisons. At each prison, she too set up AIDS education programs. She recalled a woman named Rosalind Simpson Moore-Bey at the federal prison in Lexington, Kentucky, who stood up in front of a meeting of more than 400 women and announced that she was living with AIDS.
"It was the first time that anyone had talked publicly about living with HIV in [that] prison," Whitehorn told TheBody.com.
In 1993, shortly after the District of Columbia passed a regulation allowing compassionate release, Moore-Bey was one of the first prisoners with AIDS to receive compassionate release because of her status. She spent five years at home with her loved ones. When she died in June 1998, it was without guards, handcuffs or shackles.
Part 2 of this article discusses those who are aging behind bars, including some early AIDS/HIV prison education advocates.