THE INVISIBILITY OF LESBIANS WITH
by Anne Harris- From the book "The
New Our Right To Love" Edited by Ginny Vida
(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,
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
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
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
"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
"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