October 12, 2007
STEPHANIE WILLIAMS, 1962-2007
remarkable woman and advocate
AIDS advocates around the country and members of the Housing Works and Campaign to End AIDS communities are mourning the death of Stephanie Williams, a longtime AIDS activist, cochair of Campaign to End AIDS/South Carolina and winner of the 2006 Keith D. Cylar U.S. activism award. Williams, who was 45, died Sunday at her mother's home in Bamberg, South Carolina, of complications from AIDS. In addition to her mother, she is survived by her son Brandon and numerous other relatives who were with her in her last moments.
Those who knew Williams remember her beautiful smile, her kindness to friends and strangers alike and her tireless advocacy on behalf of HIV-positive people. "She was always smiling, even when she was in pain," said Karen Bates, Williams' friend and co-chair of Campaign to End AIDS/South Carolina. "South Carolina has lost an advocate and I've lost a good friend." Bates and Williams spearheaded a powerful network of people with HIV/AIDS in South Carolina. That network was instrumental in securing millions for poor people with HIV/AIDS that ended the state's AIDS Drugs Assistance Program waiting list.
Williams began AIDS advocacy after her diagnosis in the early 1990s and was one of a handful of women in South Carolina who was open about her status. She told anyone who would listen that she had AIDS, often doing impromptu outreach to young people on the streets of Columbia. She also took in strangers like they were family, at one point feeding and providing transportation to a homeless mother and her teenage son. "She had no qualms about helping everybody. She was always saying, 'The Lord will provide' and 'We're going to make it,'" said Diana Cope, who met Williams seven years ago during an advocacy training. "And, you know what? She did make it."
Williams comfortably held her own in the company of the AIDS powers-that-be. She took a job at the South Carolina AIDS Council in the early 90s, where she worked until she was too ill. Her vast knowledge of HIV proved an invaluable resource to the department. "She could talk to doctors and scientists and would often know more than they did," said Vivian Clark-Armstead, who directs the HIV testing program at the S.C. HIV/AIDS Council. "People could be condescending, but she'd say, 'Try me.'"Always an advocate
The second chapter of Williams' work began in 1998 when she met Bates at a support group. The two agreed that more education and advocacy among people with HIV/AIDS (PLWHAs) in South Carolina was desperately needed. At the time, the state's Women's AIDS Resource Center was being run by AIDS service organizations, but Williams and Bates realized that HIV-positive women needed to spearhead the center for it to be successful. They formed a client advisory committee to guide the board of directors and eventually bylaws were put into place that "50 percent plus one" people on the board must be HIV-positive women.
The dynamic duo then founded the short-lived Association of South Carolinians living with HIV/AIDS, which laid the groundwork for South Carolina's chapter of the Campaign to End AIDS (C2EA). Even though her health was deteriorating, Williams helped organize food and shelter for a cross country C2EA caravan coming through Columbia and in a wheelchair still rode the bus from Columbia to Washington D.C. for a C2EA summit.
During the fight to secure more ADAP funding in Columbia, South Carolina, she and Bates held their ground despite some fierce opposition.
"I will always remember having lunch with State Senator Joseph Neal, who was demanding that Stephanie and Karen call off our march on the Capitol," said Charles King, President and CEO of Housing Works. "Stephanie sat straight across from him, never even looking up from her food while he made his case for why people shouldn't participate in the march. She only interrupted to give her his uneaten bread and butter. When he was through, she just looked up and said, 'Well, hon, you just go ahead and do what you gotta do, and we'll just go ahead and do what we gotta do.' Then she flagged the waiter and asked for a doggy bag. It was clear that the discussion was over."
The recent passage of $4 million for ADAP was the most significant victory for AIDS advocates in South Carolina, and it was a fight Williams was passionate about. "Poor people living with AIDS who end up on this waiting list are being abandoned to sickness and death," Williams told the Update in December. "These budgeting decisions will hurt South Carolina. We need our neighbors well and participating in life, not wasting away in hospital beds."
Williams had access to medication but was on a different kind of waiting list. After her husband died of a sudden heart attack, she couldn't afford the apartment they shared and stayed with various friends and relatives for two years while she was on the waiting list for Section 8 and Housing Opportunities for People with AIDS housing. It was only in 2006 when she and Bates each received $5,000 as part of their joint 2006 Keith D. Cylar Activist Award that Williams was able to rent her own apartment in Orangeburg, South Carolina. But her health never totally recovered from her long, up and down fight with the virus. This year she went to live with her mother in Bamberg, where she lived until her death.
"Stephanie's death need not be in vain, and one of the lessons is the need for more affordable housing in South Carolina," Bates said. "Having no place to call your own really affects your health."
It's appropriate that Williams' death has sparked conversation about AIDS housing, her death even bringing press coverage in The State about HIV/AIDS. Said Clark-Armstead, "The fact that the South Carolina media is writing about AIDS, and it's not World AIDS Day or anything—that would have pleased Stephanie greatly."