Losing Dorothy

To understand this, it helps to look at the way AIDS was dealt with in the gay community. Initially, AIDS was a source of shame, and gay men went through the requisite stages of anger and denial, followed by acceptance. Only it wasn't just acceptance, it was an all-out embrace. "For gay men, living with AIDS became a statement," Manago said. "I'm not just going to die as an oppressed faggot. I'm going to live with this. Boom. There was no stigma anymore."

But when black folks started confronting the issue, the white gay blueprint did not work. Gays had a built-in health-care network for sexually transmitted diseases, and a culture of adhering to medical treatment for those STDs. In the black community, those things were less established. There was nothing that dealt with black notions of gay sexuality, or with the way black AIDS related to substance abuse and mental health. There was nothing that spoke to heterosexuals at risk for AIDS, or to the disenfranchised, poverty-stricken world of the black underclass. And there was nothing that addressed the deeply ingrained suspicion of a government-backed medical establishment that had inflicted the Tuskegee syphilis experiments on its black population. In essence, there was no recognition of the profound differences -- both obvious and opaque -- between blacks and gays. "The empowerment piece, the cultural-affirmation piece, the part that would help them resurrect their self-image and learn to love themselves and feel good about themselves, that did not come with the blueprint," Manago said. "The only thing that came with it was a condom and the command 'Don't do it.'"

The lack of support that begins with HIV prevention persists once a black person has AIDS, said Wilson of the AIDS Institute, who is himself HIV-positive. "In order for someone to invest the time and energy it takes to get the treatment and adhere to the medicines, they have to believe their life is worth the effort," he said. "As long as there is the stigma, that isn't going to happen."

STIGMA WAS NOT A WORD DOROTHY USED, BUT she felt its effects from the moment she learned she had HIV. One Sunday, as she waved away the Jell-O and strained peaches her Auntie Bessie was trying to feed her, she recounted her loyalty to Anthony during his decline, how she stuck by him, caring for him and encouraging him to speak out about the virus. How she felt the sting of people's reactions to him, watched as his friends stopped coming around and his family shut him off. "When you have AIDS, it's like you dead," she observed. "Nobody wants to know you."

Dorothy's HIV diagnosis heightened long-standing tensions in her own family. Her mother, who had high hopes for her only daughter, stopped speaking to her. Other relatives followed suit. "They was ignorant," she remembered. "They was afraid to touch me." Anthony's family was angry with her as well. "They thought I contracted it to him," she said. "They used to want to fight me and everything. But Anthony stood up for me. He wouldn't let them take care of him. He only wanted me."

Fortunately for Dorothy, Bessie Golden-Jones was an exception. She was working as a receptionist at a clinic in South-Central L.A. at the time, and she had witnessed the reactions of patients, many of whom were African-American, when they learned they were HIV-positive. "There was a lot of anger and denial," Bessie said. "A lot of shouting and crying."

Dorothy and her Aunt Bessie had never been close, but Bessie was concerned enough about her niece that she enrolled in a nine-week home-health-aide program at Compton Adult School. She took a job working at an AIDS hospice in Long Beach, where she confronted her fear of the virus. "I was scared if somebody touch me, I could catch it. Touch a cup or a spoon, eat out the same bag of potato chips," she said. "That is the misconception people have, that I had. I learned from the people there. They told me you can't catch it any of those ways, and you can't catch it from hugging me." Bessie learned that the AIDS virus can be contracted most easily through the blood, and people with lesions caused by STDs are many times more likely to contract the virus during unprotected sex than those who don't have these sores. She also found out that such STDs are far more prevalent among African-Americans than any other racial group. In 1998, according to L.A. County statistics, 1 in 10 African-Americans living in South Los Angeles had chlamydia, a finding characterized in an otherwise dry report as "staggering." The countywide rate was a fraction of a percent. African-Americans also had the highest rates of gonorrhea and syphilis.

Since Dorothy contracted the virus, AIDS has taken center stage in Bessie's life. "Everyone I know, AIDS has touched their lives in some way," she said. "But nobody wants to talk about it. Nobody wants to hear about it. After a while, you just don't want any more bad news. You just tune it out."