lesbian ⋅ bisexual⋅ queer⋅ WSW⋅ sexual minority woman⋅ butch⋅ femme⋅ dyke⋅ boi⋅ grrl lesbian⋅ bisexual⋅ queer⋅

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HIV IS OUR FIGHT


 


Discrimination against Sexual Minority Women, LGBT Activism, and the AIDS Epidemic

HIV IS OUR FIGHT:

An Activist Packet by Natalie Wittlin Barnard College, Class of 2009 Co-President of Q, Barnard’s only group for LGBTQ students and allies

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AIDS and “The LGBT Community”
Some of the first reported cases of what became known as AIDS (Acquired Immune Deficiency Syndrome) were seen in gay men. In the early 1980s, a wave of homophobia and discrimination directed at gay men arose. AIDS was often referred to as “GRID” (Gay-Related Immunodeficiency) (Treichler, 1999, p. 27). For these reasons, “the gay community” has always been involved in the fight – or, rather, the fights - against AIDS and the virus that causes it, HIV (Human Immunodeficiency Virus). Some of the earliest AIDS-related LGBT activism was aimed at separating “gayness” from HIV and AIDS. Such efforts were, and still are, intended to show that there is nothing wrong with being gay - that sexual transmission from man-to-man is just one way of transmitting HIV and that HIV can be transmitted from man-to-woman or woman-to-man, as well. These campaigns explain that everyone is potentially at risk – that HIV is not (or not simply) a “gay disease.” Other educational campaigns have attempted to shift the emphasis of HIV discourse away from identity and towards behavior, proclaiming, “It’s what you do, not who you are, that puts you at risk” (Rankow, 1995). More recently, some organizations and groups have been attempting to “reclaim” HIV. An advertisement sponsored by the Los Angeles Gay and Lesbian Center stated: “HIV is a gay disease. Own it. End it.” (Bernstein, 2006). Such campaigns are presumably premised on the understanding that discrimination and stigma are related to behavior – that experiences of homophobia, alienation, and isolation often make people more likely to engage in high-risk behavior. It is surprising, then, that so little attention has been paid - by the medical world, the media, and “the LGBT community” - to women who have sex with women in the AIDS Epidemic.

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It’s What We Do. It’s Who We Are. Discrimination and Risk
A pamphlet put out by Duke University Medical Center states: “It’s what you do, not who you are, that puts you at risk” for HIV. “Medically” speaking, this is accurate – and it is important to recognize that your identity doesn’t directly put you at risk for HIV. Exchanging “sexual fluids” (vaginal or penile) (Rankow, 1995) or blood puts you at risk. That being said, it is imperative that we consider why certain people engage in high-risk behaviors. To fully understand why certain people are more likely than others to engage in high-risk behaviors, we must consider not only behavior and identity but also “status” (Young, Friedman, Case, Asencio, & Clatts 2000). Young et al. (2000), in their review of research on women who have sex with women (WSW) injection drug users (IDUs) and HIV, explain, “We treat WSW as a ‘status’ because same-sex activity is itself a marginalized behavior and may expose women to particular kinds of stigma and vulnerabilities” (p. 501). Being lesbians, bisexuals, queer women, and women who have sex with women does not increase our risk for HIV. However, the way many women who have sex with women are treated because of their sexual identity or behavior does increase their risk for HIV. Studies have demonstrated that, in certain contexts, being a sexual minority woman is a “risk factor” for HIV transmission. This is because the treatment that sexual minority women receive because of their status as sexual minority women can put them at risk for HIV, especially when they are already in potentially risky situations. One group of women for whom sexual minority status increases risk for HIV transmission is injection drug using women who have sex with women. Numerous studies have shown that, of women IDUs, women who have sex with women have higher rates of HIV and engage in higher rates of “high-risk” behaviors than women who do not have sex with women. WSW IDUs, who tend to be women of color and are often living in poverty, face multiple, interacting (Crenshaw, 1991) forms of discrimination: homophobia from the communities they grew up in and IDU

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communities; alienation from LGBT organizations concerned that drug users will taint their public image; racism, sexism, classism, homophobia, ignorance, and hatred from society at large. This discrimination can translate into higher risk for HIV in a number of ways. For example, these women are sometimes denied clean needles by fellow women IDUs. One researcher observed a woman IDU say “that dyke” after telling a fellow woman IDU she didn’t have any clean needles (Young, Friedman, & Case, 2005, p. 111). Also, constant subjection to discrimination leads many women to experience what Elizabeth Arend refers to as “shame, discomfort...[and] crippling feelings of isolation and emotional disempowerment” (Arend, 2005, p. 110). These feelings often engender feelings of “hopelessness and resignation” (p. 112), which can translate into engagement in high-risk behavior.

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Identity vs. Behavior vs. Status

What puts sexual minority women at risk for HIV is not identity but behavior and status (which are often related)… IDENTITY: This is how you define yourself. Your identity does not put you at risk for HIV. Sexual identities include lesbian, bisexual, straight, queer, etc. BEHAVIOR: This is what you do. HIV is transmitted through exchange of blood and penile and vaginal fluids (Rankow, 1995). Any behaviors during which this exchange occurs can put you at risk for HIV – regardless of how you identify. Straight women can get HIV from other women, and lesbians get can HIV from men. Female-to-female sexual transmission is possible. There is a lower risk of transmission with many sexual behaviors between two women than, for example, with those between a man and a woman, but that doesn’t mean there is no risk (A. Heath-Toby, personal communication, March 6, 2009). STATUS: This is your position in society. It is how you are treated by your family, peers, community, local organizations, public and private institutions, etc. Status is perhaps the most overlooked determinant of HIV risk – or, more accurately, vulnerability. As Alexander Irwin, Joyce Millen, and Dorothy Fallows explain in their book Global AIDS: Myths and Facts, “Socioeconomic determinants…often lead people to adopt ‘risky behaviors’ and render them vulnerable to HIV infection” (Irwin, Millen, & Fallows, 2003, p. xxviii). Sexual minority women, particularly women of color, poor women, and women who inject drugs, tend to be “multiply marginalized” (Young et al., 2005) – facing a combination of homophobia, sexism, racism, and classism. As a result, some sexual minority women frequently engage in high-risk behaviors.

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Studies have shown …
Women who have sex with women (WSW) injection drug users (IDUs) have higher rates of HIV incidence and prevalence than other women IDUs (Young et al., 2000). WSW IDUs have higher rates of high-risk sex with men than other women IDUs (Friedman et al., 2003). WSW IDUs are more likely to engage in high-risk injecting (sharing needles or rinse water, etc.) than other women IDUs (Friedman et al., 2003, p. 903-4). WSW IDUs are more likely to be homeless or institutionalized or to “receive most of their income from selling sex” than other women IDUs (Friedman et al., 2003, p. 904). WSW IDUs are less likely than other women IDUs to talk about AIDS with their injection drug using peers (and studies have shown that such conversations are associated with a reduction in risk) (Young et al., 2000, p. 507-8). 
 
 
 


*

























































 * Note that these findings are not true for all groups of WSW IDUs. 7


Activism: What’s going on?
Unfortunately, very few organizations directly address the risks that women who have sex with women face due to their status in society. More frequently, LGBT and AIDS activism organizations address the difference between identity and behavior and note that lesbians are at risk for HIV not because of their identity but because of their behavior (which includes sex with men, injection drug use, etc.). Some organizations also address the risk of woman-to-woman sexual transmission of HIV. The Lesbian AIDS Project at Gay Men’s Health Crisis was founded with the goal of bringing those women who are often left out of conversations about HIV and AIDS, but who are affected by HIV and AIDS, to the forefront of the LGBT and AIDS movements.

Lesbian AIDS Project:
The Lesbian AIDS Project (LAP) was founded in 1992 (Schindler, 2002). Amber Hollibaugh, who served as LAP’s first director (Schindler, 2002), explains in Lesbian Denial and Lesbian Leadership in the Epidemic the purpose of the project: “LAP…is an organizing project with two core ideas: lesbian HIV visibility and lesbian sexuality. Lesbians at risk of or with HIV have been ‘the disappeared’ lesbians in our communities for too long. Wrong class, wrong color, wrong desires, wrong histories. But these are the women who need to become the center of the lesbian movement, not just the AIDS movement” (1999, p. 209). I met with Alicia Heath-Toby, Program Coordinator at LAP, to discuss the work that LAP currently does and what my student group, Q, could be doing to help. Alicia spoke at length about how the primary challenge to HIV prevention for at-risk women who have sex with women is “invisibility.” She explained that rates of transmission in women of color are increasing and that this probably has something to do with lesbians and other WSW. Alicia noted that women who have sex with women,

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particularly women of color, face discrimination, stigma, sexism, and heterosexism. The main question she posed, and which LAP focuses its attention on, is: “What does it mean to be invisible in a huge epidemic affecting the world?” She explained that being “invisible” puts women at risk – that it makes them feel like they don’t matter and is likely related to high rates of mental illness, suicide, drug use and high-risk behavior. Alicia and I also discussed the barriers to frank discussion about sex with both women and men and how these barriers create additional obstacles to fighting HIV among WSW. She spoke about the shame many self-identified lesbians feel, for example, about having sex with men. She also emphasized the need for candid conversations about behaviors, like cunnilingus during menstruation or drug injection, that many people might find disgusting. Alicia said that it is important, and indeed necessary, to have conversations about HIV and sexuality together. When discussing the risk of transmission, she said, many women “hear low and think no.” She emphasized that “low does not mean none” – that women can transmit HIV to other women through sex and that self-identified lesbians can have sex with men, inject drugs, and engage in other high-risk activities. LAP’s main goal, Alicia told me, is to change social norms – in particular, those surrounding WSW and HIV. Specifically, LAP challenges the assumption that “HIV is not a problem for us.” When I asked her how Q could help, she said that the most important thing to do is raise awareness or, as she put it, “keep making noise about it.” She said that the ways students on college campuses will approach issues relating to WSW and HIV, and the ways in which we can make a difference, are very different from the ways that LAP approaches these issues and strives to make a difference – and that this is a good thing. Alicia explained that there is “no one way” to make a difference and that we must try out all strategies.

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Advocates for Youth:
Advocates for Youth is a D.C.-based organization dedicated to promoting the health, specifically the sexual health, of adolescents in the U.S. and abroad. It is designed to empower teenagers to take charge of their own sexual health and to make healthy choices. It also advocates for comprehensive sex education. While Advocates for Youth is not specifically geared toward women who have sex with women, it is one of few organizations that addresses the complex reasons why WSW (specifically young WSW) are at risk for HIV and STIs. In a section of its website for women who think they “might be lesbian,” Advocates for Youth presents a quote from one 17-year old who says, “Despite the rumor that dykes are indestructible, I’m not taking any chances.” This same section lists those behaviors that put lesbians at risk for HIV. The list includes needle-sharing, unprotected vaginal intercourse, and oral sex. However, it fails to include vagina-vagina contact. Also, while it says that “sharing needles” puts women at risk, it advises, “Do not shoot up drugs” (rather than “never share needles if you do shoot up drugs”). In 2001, Advocates for Youth put out a report called Young Women Who Have Sex with Women: Falling through Cracks for Sexual Health Care. The report explains: “Health educators often assume that young women who have sex with women (YWSW) are at little or no risk for HIV, other sexually transmitted infections (STIs), and unintended pregnancy when, in fact, risk behaviors and barriers to health care put YWSW at risk for all three. Health care professionals and researchers often tell YWSW that they are ‘safe.’ Moreover, the sexual health needs of young women of color who have sex with women go mostly unrecognized. YWSW need information and programs that specifically address their complex needs and that encourage them to protect themselves” (Gilliam, 2001). The report includes a wide range of information on how the health care system, and society at large, puts YWSW at risk for HIV: • Widely-circulated safer sex materials rarely explain how women should have safer sex with women. Those materials with this information are often only available to lesbian organizations that do not reach many YWSW (particularly women of color). • Because of concerns about homophobia, many lesbians seek out medical care (or give

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all information necessary for proper medical care) less often than other women. Also, sometimes health care providers inaccurately assume that lesbian-identified women do not have sex with men. The report recommends that programs that address HIV risk in YWSW broaden their scope to address not only what most directly puts YWSW at risk but also what indirectly puts them at risk. It discusses the high rates of mental illness, homelessness, and substance abuse among LGBTQ youths. It also cites a study that found that lesbian and bisexual-identified teenage women were more likely to have engaged in “commercial or survival sex” than heterosexual-identified or questioning teenage women (Saewyc, 1999). The report explains that many YWSW face a combination of “sexism, racism, and homophobia from society as a whole, the white lesbian community, and their individual communities of origin” (Gilliam, 2001). Advocates for Youth hosts two websites called “MySistahs” and “YouthResource.” MySistahs is a website specifically for young women of color. YouthResource is specifically for LGBTQ youths. Both websites’ sections on HIV state: “HIV doesn't discriminate. It doesn't care who you are - black, Latina, Native American, Asian, straight, gay, lesbian, bisexual or transgender. Anyone can become infected with HIV, the virus that causes AIDS, because it's not who you are but what you do that puts you at risk for getting HIV. Only you can protect yourself from HIV.” While its goal is to empower adolescents to protect themselves, this message is somewhat problematic. First of all, while HIV does not itself discriminate, it is clear from the research described in the report that discrimination puts people at risk for HIV. Additionally, while the message “only you can protect yourself from HIV” might be helpful for teenagers, it is critical that policy-makers and non-governmental organizations recognize that this message does not give the full picture; policy and societal attitudes dictate, or at least influence, people’s risk for HIV. Therefore, to protect people from HIV, we must target policies, organizations, and widespread attitudes.

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International Gay and Lesbian Human Rights Commission:
Very few organizations are specifically devoted to HIV and AIDS in women who have sex with women. It is important to recognize that other organizations that address those more general factors that put many WSW at risk for HIV are allies in this fight. The International Gay and Lesbian Human Rights Commission is an organization dedicated to protecting the basic human rights of all people throughout the world. In particular, IGLHRC fights for those people “who experience discrimination or abuse on the basis of their actual or perceived sexual orientation, gender identity or expression.” IGLHRC understands that health is a basic human right and is aware of how homophobia and other forms of discrimination function as violations of this right. Its website states: “Due to stigma, people whose sexual orientation, gender identity or expression does not conform to social norms often find themselves subject to discrimination that compromises both their access to healthcare and their medical treatment. Stigma-based discrimination is particularly evident in efforts to treat and prevent HIV/AIDS.” IGLHRC, contrary to what its name might imply, also understands that – especially in working internationally – many people who are affected by this sort of discrimination do not identify as “gay” or “lesbian” (a factor that some LGBT organizations ignore). As part of its “Africa Program,” which is based in Cape Town, South Africa, IGLHRC published a 2007 report called Off the Map: How HIV/AIDS Programming is Failing Same-Sex Practicing People in Africa. This report documents how ignorance, discrimination, and threats of punishment and violence put people in many countries in Africa who have sex with people of the same sex at risk for HIV. The report explains that “same-sex practicing men and women are at increased risk of contracting HIV not solely because of bio-sexual vulnerabilities, but as a result of an interlocking set of human rights violations that prevent access to effective HIV prevention, voluntary counseling and testing, treatment, and care…Same-sex practicing African women have self-reported HIV seroprevalence rates substantially higher than one might expect. The vulnerability of same-sex practicing men and women is not due to any biological 12


predisposition, but is the result of an interlocking set of human rights violations and social inequalities that heighten HIV risk. Anti-gay discrimination is fueling the African HIV/AIDS epidemic.” The report also lists a series of recommendations for how governments and NGOs can help end these human rights violations and thus reduce HIV transmission. This list includes the decriminalization of same-sex sex, the funding of LGBT-inclusive HIV prevention and treatment programs, and the funding of studies that examine HIV in women who have sex with women.

Discussion with Q, Barnard’s Group for LGBTQ Students and Allies:
I led an hour-long discussion with Q on HIV in “our community.” I started off the discussion by asking everybody who “our community” consists of – in theory and reality. I then asked the members of Q what conversations they have had about HIV in “our community,” and in general, and whom these conversations have focused on. Next, I told them about the research I had been doing on women who have sex with women and HIV. We discussed whether and why addressing HIV should be priority for us and the best ways to address HIV among lesbian, bisexual, queer, and other women who love, desire, date, and have sex with women. While the group was particularly interested in the logistics of woman-to-woman sexual transmission, we also discussed the social factors that put certain WSW at risk for HIV and why addressing these factors should be a priority for an LGBT and allied group like ours. When discussing “our community,” some of the questions that arose were: Are allies part of “our community?” What about people who aren’t out? People who are not involved in official groups? These questions led to a conversation about why people do and don’t come out and how, in many cases, it’s easier for people who are already in a position of privilege to come out (versus people who are already facing discrimination). We also spoke about the racial and socioeconomic makeup of LGBT movements since the 60s and how, because these movements have so often been tied to universities, they have been structurally skewed towards white, middle-class, educated people.

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Next, we spoke about who conversations about HIV in “our community” tend to focus on. Everyone agreed that these conversations generally focus on gay men. However, one person noted that, more recently, women of color have begun to be included in such conversations. A number of people mentioned that there has been a “media push” to include everyone in conversations about HIV and to encourage people to focus on “salient cues,” such as “unprotected sex” and “promiscuity.” The general consensus was that there was little, if any, information “out there” on how women can protect themselves from HIV while having sex with women. One person spoke about how lesbians can get all STDs but tend not to think about it – and said there needs to be more awareness about this. When someone mentioned that the media has focused on the prevention message, “use condoms,” someone else immediately interjected that this message is extremely unhelpful for women having sex with women. She said, and everyone seemed to agree, that queer women lack established ways of expressing a desire to use protection with other women. At the end of the conversation, we turned our attention to why we should care about the increased risk of HIV transmission for WSW IDUs. One student mentioned the importance of “solidarity.” We talked about how, if our goal as activists is to fight homophobia and discrimination and promote equality, the discrimination and inequality that puts certain WSW at risk is definitely something we should care about. A number of students also focused on how HIV is passed from person-to-person and from communityto-community. They discussed how HIV in one group of people or community is not something that can be fought in isolation. As one student said, “Less HIV in any community is going to benefit everyone.”

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What are we fighting for?
As LGBT activists, we have had a variety of different experiences and we work on a number of different specific projects. However, we are all committed to the same fundamental goals: fighting discrimination and homophobia and achieving equality. Discrimination can take on a number of different forms. It can be overt or subtle, legally or otherwise sanctioned, large-scale or small-scale, targeted or pervasive, etc. When someone is imprisoned for same-sex sex, that is discrimination. When two people are not allowed to marry because of their sexes, that is discrimination. When a doctor assumes that you are only having sex with people of a certain sex, that is discrimination. When an organization purporting to represent all LGBT people ignores the experiences of women of color, that is discrimination. Homophobia fuels discrimination. Because it is so widespread, it is often hard to notice. When ignorance and hatred are systemic, they are often also invisible. Only by drawing attention to the homophobia that pervades our society can we change it. We will know discrimination no longer exists not when it is not explicitly, legally sanctioned but when all people are equal in reality – for example, when women who have sex with women are no longer disproportionately affected by HIV and AIDS.

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HIV Is Our Fight
But who are “we”? As one conversation with a college’s LGBT group demonstrates (and many other conversations could), this is a complicated question. “The LGBT Community” is not monolithic; rather, it is incredibly diverse. The issues faced by some people within “our community” are very different from those faced by other people within “our community.” However, as LGBT activists, we are dedicated to eliminating homophobia and discrimination and to achieving equality for all people regardless of sexual orientation, identity, and behavior and gender expression, presentation, and identity. Sexual orientation and gender expression do not exist in isolation from other social factors. People of color, in many cases, are affected by discrimination “based on sexual orientation” more than white people are. It is absolutely critical, then, that when we define our mission as LGBT activists, we not limit ourselves to “specific” forms of discrimination; we must recognize that our identities and backgrounds intersect, as do different types of discrimination (Crenshaw, 1991). In Lesbian Denial and Lesbian Leadership in the Epidemic, Amber Hollibaugh says, “HIV makes a mockery of pretend unity and false sisterhood” (1999, p. 212). As women who love, desire, date, and have sex with women and who identify as gay, lesbian, bisexual, queer, straight, or whatever else, we must acknowledge that real unity and sisterhood do not exist. We must understand why this is, and we must work towards achieving them. As we fight for the rights of gay, lesbian, queer, bi, etc. women, we must recognize that we do not represent all of these women. When we ask for the right to marry, we must consider the fact that this is part of a fight for equality – and that the fight against HIV in WSW is also a part of this fight. We must recognize that women who have sex with women and inject drugs are put at risk for HIV because they have sex with women. These are women like us in that they love women and have sex with women and want the right to do so freely without facing repercussions of any kind. Many of them experience repercussions and forms of discrimination that other women who love and

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have sex with women do not. We must recognize both our similarities and differences and work to achieve equality for all of us.

What you can do:
• Talk about it! Raising awareness is the first step in any activist project. While many WSW face overt forms of discrimination, many too face more subtle, systemic forms – which includes widespread ignorance and invisibility. Before we can effect any large-scale change, or while we attempt to do so, we must effect more local change. This means talking to your peers about how discrimination against people like us puts many women at risk for HIV. This also means raising this issue to LGBT groups that you are a part of. Educate yourself. Learn about what puts many WSW at risk for HIV. You can do this through reading and through community service. Q is going to be volunteering with the Needle Exchange Program at Harlem United. Work like this directly helps people at risk for HIV and also helps us learn about the systems that puts people at risk (which allows us to better understand how we can change these systems). Be observant and critical. If you are involved in LGBT or AIDS activism groups, think about who you are working with. Ask yourself, “Who is included? Who is excluded? How can we make our work more inclusive of all LGBTQ people? How can we help those people who do not identify as LGBT (for a variety of reasons) but face discrimination because of their sexual behavior or gender presentation?” Write a letter to your local (or global) LGBT or AIDS activism organization explaining why women who have sex with women and are at risk for HIV should be a priority.

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Bibliography 
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