NEW YORK (WOMENSENEWS)–Two recent studies suggest that lesbian and bisexual women may not be receiving appropriate messages about how to protect themselves against HIV.
In a four-year ethnographic survey of drug-using women who have sex with women, Barnard College professor Rebecca Young found that these women faced discrimination and maltreatment by healthcare providers which "seemed to be intensified" beyond the usual discrimination heaped on drug users who try to get medical services. They experienced: isolation, where women "seemed to have few regular or ‘close’ contacts with non-drug using family or friends;" homophobia in their social networks, which prevented the kind of easy communication that also carries information about HIV risks; and institutions that actively, aggressively discouraged "lesbian" behavior.
"Women were subjected to extremely increased surveillance and punitive separation from not only girlfriends but all or most other women in shelters, drug treatment programs, and jail," says Young, who is also an investigator at the Center for Drug Use and HIV Research at the National Development and Research Institute in New York.
Another study that underscored Young’s findings was released at the AIDS 2002 Barcelona: 14th International AIDS Conference, and found that young, low-income women in Northern California had a rate of HIV infection more than four times the rate for California women overall. Within this group, the highest level of risk behaviors, from sharing needles to unsafe sex with a male partner, occurred among women who reported having sex with both women and men.
Women who reported sex only with women, however, reported no IV drug use. Those who partnered only with men had also a lower rate of combined risk behaviors than women who reported sex with both, according to the study author, Dr. Susan Scheer, an investigator at the San Francisco Department of Public Health.
The reasons why are complex, but researchers are zeroing in on at least two factors. One is that while sex between women is almost surely not responsible for HIV transmission, social service workers marginalize women who engage in such activity as sexual pariahs, routinely dismissing or overlooking their other, more risky behavior. The second factor, perhaps exacerbated by the discrimination of providers, is perhaps more central: The isolation these women feel in society contributes to feelings of worthlessness.
According to the most recent figures available from the Centers for Disease Control and Prevention, 2,220 of the 109,311 women in the United States who have AIDS reported having sex with other women. But while the number of HIV-positive lesbian and bisexual women is far smaller than those of straight women, the infection rate is significantly higher. In Los Angeles in 1997, an infection rate of 4.2 percent was reported for lesbians and bisexuals versus 1.2 percent of exclusively heterosexual women. In 1993, in Kings County, Washington, HIV infection was found to be five times more common among women identified by counselors as "lesbian or bisexual."
Silence and Isolation Contributes to Higher Infection Rate
Daria (not her real name) certainly felt silenced, growing up gay in the mid-1970s in a Catholic Latino community in Brooklyn. Her mother would warn her: "If you let [gays] look at you they’ll hypnotize you." She found love only with "a heterosexual woman who was already married to someone else."
Unable to openly share who she was, Daria "medicated myself." She became part of a community, of what she called "triple rejects: gay and lesbian drug addict sex workers."
When one of her group died in 1981, the first AIDS death in her community, she says that no public health authority contacted "the people closest to him–they were like, ‘let’s just get rid of them.’"
In those days, she says, there was a kind of fatalism in her behavior and others in her community. "If it happened, well, just put the rope around my neck."
In 1987, when Daria was diagnosed with HIV, she made a decision to quit sex work and began, slowly but surely, to make her way out of drug addiction. Now 17 years drug-free and a counselor for a Brooklyn church, she firmly believes that it’s the isolation, and the misery it produced, that led to her infection.
Drug Use, Sex Work More Common
When the stigma of being in a sexual minority combines with that of using drugs, particularly injection drugs, "the word discrimination isn’t evocative enough," says Young. "They’re not given the same access to relationships and resources."
In the California study, Scheer also found something a higher-than expected "victimization rate" for bisexual women. Fully 60 percent of those with both male and female partners, as compared with 27 percent of those with male partners only, reported having been threatened with coerced sex; 53 percent reported having been raped. Nearly half–44 percent–reported trading sex for money or drugs.
When asked about victimization and sex work, Rebecca Young confirmed that she’d also found a lot among her subjects, though she cautioned that both are generally common among women injection drug users.
Cynthia Nichols is familiar with drug use and victimization; in agony after her mother’s death in 1990, she began smoking crack and shooting up, and sleeping behind Port Authority and trading sex for drugs. In the wake of her mother’s death, her family had pushed her away, in part because she was a lesbian. That left her and her partner, who was also a drug user, in their own little world together.
"I wasn’t interested in community help, I was interested in using," she says bluntly now.
In 1992, Nichols learned she was HIV-positive, but kept using for years, and started developing opportunistic infections. In 1998, a court-ordered rehabilitation program helped her to come clean, and eventually brought her to the Lesbian AIDS Project, based in Manhattan. There, she attended support groups and began to be trained as a peer counselor.
Nichols moved on to be a peer counselor and outreach worker, and now Nichols is about to become state certified as a substance abuse counselor. She will continue to work with high risk women in the Lesbian AIDS Project.
Lesbian AIDS Project Helps without Judgment
Robin Garber-Kabalkin, director of the Lesbian AIDS Project of Gay Men’s Health Crisis in New York City, found the concerns highlighted by Young’s research deeply familiar.
"A lesbian who comes to us might be married," she says. Many have similar histories of drug use, sex work, and sexual victimization. And they’ve felt marginalized in their communities, harassed by drug treatment programs, and isolated from their families. "We have women whose children have stopped speaking to them."
When they come to the project, though, they come to a place without judgment–somewhere they can begin again. And many will be trained to become peer educators and outreach workers, and to help others.
That’s been the model since the beginning, says Amber Hollibaugh, one of the project’s co-founders and its first director. The project began simply: Hollibaugh and others visiting social services offices, Planned Parenthood offices, bars and community centers. "You have to be visible," says Hollibaugh, "and not demand that visibility be returned."
The approach seemed to work; in the early years, between 300 and 500 HIV-positive lesbians were involved, training and educating their peers. Many, like Daria, then went on to work for other social service and health organizations, such as Body Positive and Partnership for the Homeless, though others have been lost to the epidemic. Currently, the project’s support groups involve about 150 women, and its outreach and prevention programs reach between 10,000 and 20,000 women a year. And it has been the model for other peer-education programs for HIV-positive women across the country.
When asked about a future for the project, Garber-Kabalkin speaks gently of "a cornerstone for empowerment of HIV-positive lesbians . . . Their education, new skills–to craft a way of being in the world." Her eyes light up: "I’m seeing that happen for the peers we have now."
Chris Lombardi is a freelance writer in New York.
For more information:
Gay Man’s Health Project–
"Lesbians and HIV: Multigenerational Dual Disclosure":
Centers for Disease Control and Prevention–
"HIV/AIDS and U.S. Women Who Have Sex With Women (WSW)":
The Body.com–Current Issue: Women and HIV:
"Resources: The Body’s State-by-State Directory of Organizations for HIV-Positive Women":