THE INVISIBILITY OF LESBIANS WITH AIDS

(Editor's Note: There is very little medical documentation of woman-to-woman sexual transmission of AIDS. But a significant number of women who identify primarily as lesbians have contracted AIDS through intravenous drug use or heterosexual sex. Anne Harris interviewed Amber Hollibaugh, director of the Lesbian AIDS Project at the Gay Men's Health Crisis, based in New York City. An earlier version of this article appeared in Network magazine, July 1994, pp.23-26.)

In April 1992,more than ten years into the AIDS epidemic, and nine months before the Centers for Disease Control expanded its definition of AIDS widely enough to include any of the opportunistic diseases that affect HIV-positive women, Amber Hollibaugh helped form the Lesbian AIDS Project (LAP) at Gay Men's Health Crisis, and began a new chapter in the fight against HIV/AIDS.

The program is one of a kind. "There are other lesbian health programs that have an HIV component," says Hollibaugh," and a lot of tired lesbians running around doing the work, but there is no other fully staffed and running program, as far as we know, in the world."

Despite disproportionately increasing numbers of women with AIDS in this country, researchers and health care workers have been slow to respond. AIDS cases among women in the United States rose 9.8 percent in 1992, while cases among men rose 2.5 percent. Nevertheless, apart from staff at centers such as Gay Men's Health Crisis, few people were noticing, and those who did notice didn't recognize what they were seeing.

"The Lesbian AIDS Project was supported by lesbians at GMHC for a year before the project started. A lot of us were doing regular AIDS work in the community, in every diverse community you can find, and we kept running across dykes who were HIV-positive. Nobody seemed to notice. Everybody kept saying, Lesbians don't get AIDS, and we'd look at the stacks of files on our desks and say, I know the agency says lesbians don't get AIDS, but how come I've got seven cases?"

By November 1993, 40 percent of AIDS cases worldwide were among women, and three out of four women in this country with AIDS were women of color. The few available statistics offer cryptic clues about the persistent invisibility of the lesbian AIDS population: By the large, HIV-positive women comprise pre-existing minorities of gender, race, class, and sexuality.

While HIV-positive women do get many of the same infections that their male counterparts experience, hormonal differences in women create different absorption rates of medicine. And as almost all AIDS research has been conducted with white male subjects, much of what is known about AIDS and immunodeficiency disease in general is not specific to wemen's bodies.

To complicate matters, many lesbians are not comfortable coming out to their doctors and nurses. For many women who are closeted for economic reasons, who are bisexually active because they cannot afford to leave their husbands or families to live permanently with female lovers, who risk losing their children and extended families for an admission of homosexuality and/or HIV, or who have sex with men for money or drugs, the reality of being an "out lesbian" is remote. For these women, coming out to doctors and health care workers can be a dangerous-if not impossible-task. As economics, race, and drug addiction blur the lines of sexual identity, the invisibility of HIV and lesbianism in these women's communities becomes more and more entrenched. For many, the silence and isolation is unbearable.

Amber Hollibaugh has been working with HIV-positive men and women for more than ten years. Her recently completed film, The Heart of the Mater, about lesbians and AIDS, won the Freedom of Expression Award at the prestigious Sundance Film Festival. For Hollibaugh, there is no simple definition of lesbian, or of a lesbian-with-HIV/AIDS. Her work centers on the immediate needs of "women- identified-women," she says, and encompasses "whatever that needs to mean." Depending on which community one is addressing, it can mean very different things indeed.

"The variety of ways that women-either for preference or survival-figure out who they sleep with or what they do (sexually is often different from how they identify. It's the confusion of those two things that is really unhelpful. All communities have opinions that everybody learns quickly as part of the survival of being in that community. If you know in your community that there's a lot of attitude about whether you're really a dyke if you say you sleep with men, or you know that there's a lot of classs stigma associated with drug use, and you have a history at some point in your life of shooting up, you don't talk about it. You drop it out of your hisory: you leave it alone. What we remember to tell each other is what we can bear, and we balance that against our need for a community. And it's not The Truth, in some simple way." This seems to indicate that, despite appearances, there is a politically active moment of HIV-positive lesbians. Hollibaugh is passionate about this fact.

"Absolutely," she says. "But they don't come out of communities where the more controversial lesbian feminists have drawn their political energy from. Their activism is a different kind of activsm, and they come out a different history. It's not that these women don't have agenda," stresses Hollibaugh. They simply have no voice.

"A lot of the work that is being done has been focused around prevention for white middle-class women who are worried about the possiblity of HIV transmission, and it hasn't primarily been focused where lesbians are most at risk. The numbers [of lesbians living with HIV] are already substantial, and in any project where you have few resources, you have to make a pretty clear decision about where you're going to focus your work. My focus has been to say we're going to go into those communities that may not be identified as lesbian communities, where women partner with women, and where there are substantial numbers of lesbians who are never addressed as lesbians around HIV. They're targeted as women who use drugs, or women who have sex with men, or any number of other things, but they're never talked to as women who partner with other women. Because of that, there is never any information, resource, knowledge, support, or respect for them as dykes,"

The numbers are disproportionately higher still at drug rehabilitation centers and programs-up to 30 percent who identify as lesbian, and more than that if you include those women who partner with other women but don't identify as lesbian. Clearly, the issue of HIV and lesbians is complicated not only by our lives as mothers and users and wives and emplyees and welfare recipients, but by the sweeping definitions that the government agencies that supply survival money seem to need to impose. Surviving with AIDS or HIV, then-particularly for women-is not simply a matter of health. It is pure politics.

For such a diverse client community, marginalized for reasons of class, race, and gender, concerns vie for priority on the roster of services offered by the Lesbians AIDS Project. While Hollibaugh and her staff may be able to address issues of isolation, health care services, and safer sex with the women who find their way to Manhattan, what about those women who don't even make it to GMHC? Is it hard to sustain successful outreach programs when many don't reach back?

"I think the sucess of the project has been that the number of lesbians already affected by HIV is really profound. They need resources and support and services that are directed to them specifically. The problem has never been finding them, the problem has been trying to figure out how to make sure the project serves those very specific needs that these women have.

"This is clearly like every other susceptible population, and there's been much misconception because people have thought it hinged on transmission, and it doesn't hinge on transmission. For example, outreach to gay men isn't about how you got HIV, it's about the fact that you're gay. And if they're gay men who use needles, you need to reach gay men who use needles; if they're gay men who also have sex with women, you need to talk to them about that. But it's not that they're less gay, regardless of the transmission route. And lesbians are the same." But with few statistics, and a correspondent paucity of financial resources, there was little being done, even within the gay community. "People here [at GMHC] recognized that, and they acted. It was a big leap, because there were no statistics. They took a chance, and I think it's really a proud thing."

In January 1993, the CDC broadened the official definition of AIDS to include infections involving the cervix, uterus, and ovaries. It was the first government agency to identify opportunistic infections afflicting women only as a result of the AIDS virus. As a gesture, it was nice. But now, a year and a half later, at the time of this writing, a spokesman at the CDC National AIDS Hotline says that there is still no statistical breakdown for lesbians.

"Categorization is by types of exposure, and because reports of woman-to-woman oral contact remain unconfirmed," he explained, the CDC has conducted no tests on lesbians and AIDS as of October 1994. But do lesbians transmit HIV? "Call Amber Hollibaugh at GMHC in New York," the spokesman advised.

The broadened definition certainly made possible health services for a segment of the female PWA population who were previously denied services completely, but in terms of acknowledging lesbians, things have not changed substantially since 1992.

"It was a wedge, but not in any way completely what we needed," responded Hollibaugh. "Sixty-five percent of HIV-positive women who died before January 1993 died without an AIDS diagnosis, which means they died without access to services. Thirty percent of those women were dykes. The cross-over [result] is that there are a lot of issues of sexually transmitted diseases, of what [lesbians] do with each other, that we really need to be looking at seriously. That's a very uncomfortable conversation in the lesbian community.

"We're not comfortable talking about anything sexual. Why would HIV be any different? Whether we need to practice safer sex, or in what context, or how to get what we want, the truth is, we're not comfortable with our own bodies. And as a result, we have very little information that is helpful."

The correlation Hollibaugh draws between traditionally stilted sex talk within the lesbian community and a pervasive lack of AIDS awareness is grim. As we now know, the most effective tool in fighting the disease is education and communication, and if lesbians are still afraid to talk about sex, we'll never talk about AIDS. The result is high-risk behavior.

Apart from questions of sexual freedom, the politics of AIDS can carry with it the rheoric of the women's movement of the 1970's. Many women in the lesbian community feel that the epidemic is not directly affecting them, and that they have filled the role of caretaker long enough. Hollibaugh, who has been a leading figure in both AIDS outreach work and the "sex wars" debates of the late seventies, believes that the epidemic has neither galvanized the community nor created an irreparable fissure. HIV/AIDS simply requires a response.

"Some of us have a primary identification of being queer, while some lesbians primarily identify with other women. I don't feel like I've been taking care of gay men. I feel like a part of my community was devastated, and all the forces we've been working against politically used it [AIDS] to marginalize all parts of the community: women and men, people of color, young people, you name it. The new conservative right loved it, and makes no distinction between lesbians and gay men.

"For me, it was a direct attack. The attitudes people had when I was walking with a friend who had lesions wasn't like I was one removed. I felt that they were talking about me. HIV is devastating to the building of a broad lesbian and gay movement. It has devastated the agenda that we would have created together, or apart, because everything's had to be focused [on the epidemic].

"Had it been lesbians, they would have been equally preparded to let us die. That gay people should die for being gay is unacceptable to me. And I don't care whether the gender is male or female. It is unacceptable to me that gay people's lives are expendable. And that isn't about liking men. I just find it completely unacceptable that gay people can be treated as less than human parts of the culture. You know, I'll fight with gay men, be separate or together with them in the ways that I choose, but it's MY choice. It is not the choice of the straight world to make a decision about the value of our lives."

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