The first thing Veronika Cauley does when we meet on a rainy Saturday afternoon at the Lyon-Martin Women's Health Services clinic in San Francisco is define her terms: She prefers the label transgendered, or TG, to transsexual. Transsexuality usually refers to gender-dysphoric people -- those who feel their anatomy is in conflict with their gender identity -- who have taken hormones and had surgery that allows them to live in their gender of preference. But transgenderism, says Cauley, is "inclusive of anyone with a nontraditional gender presentation" -- butch women, femmy men, cross-dressers and transsexuals. A big, beautiful black woman in her mid-40s with a melodious voice, Cauley looks professional in a colorful but conservatively cut women's business suit, perfect for her job as commissioner of veterans affairs for the city of San Francisco. She has just come from Laughter and Tears, a support group for women with HIV at Lyon-Martin, on Market Street between the seedy Tenderloin and the prosperous Castro. We settle down in a small room and make ourselves comfortable on the donated furniture. "I'm accepted as a woman even by other women," Cauley says with evident satisfaction, despite not having been able to afford any gender reassignment surgery or even electrolysis.
I have no trouble accepting Cauley as a woman either, and this isn't just the magic of estrogen, which she has taken since she was 26. Her activism around HIV and transgenderism is not abstract; it springs from the most intimate part of her life. She has survived -- and even triumphed -- despite poverty, racism, addiction, illness and deep prejudice against trangendered people. And she remains cheerful and articulate, a powerful advocate for her community. In addition to her work with veterans affairs, she serves on Mayor Willie Brown's HIV/AIDS Planning Council and on the board of the Tenderloin AIDS Resource Center. And her next ambition -- to carry the trans banner onto the board of city supervisors -- is no secret. You just can't get around the girl.
The second thing Cauley wants to talk about is a recent report that found that 63 percent of African-American male-to-female transgenders (MTFs) in San Francisco have HIV. This statistic, from the Transgender Community Health Project (TCHP) study led by epidemiologist Kristen Clements of the San Francisco Department of Public Health, has understandably alarmed the handful of people providing AIDS prevention and treatment services to transgendered people. "These figures are terrifying," Clements says flatly. "They're higher than those for any other group." In comparison, 31 percent of gay men and 12 percent of IV-drug users in San Francisco are thought to be HIV positive, according to Willie MacFarland, director of HIV epidemiology for the city.
Because transgendered people are often less likely to be hired by employers -- many are unsettled by any kind of ambiguous gender presentation -- they tend to have limited economic opportunities. Without the prospect of a job, insurance is even less likely. The situation is not quite the same for female-to-male transgenders (FTMs), who tend to find it easier to pass and get salaried work; still, though less visible than MTFs, they are at risk for HIV.
Of the 392 MTFs in the study, a third had traded sex for money in the last six months; they had an average monthly income of just $744. Almost two-thirds had been imprisoned. Half reported no stable housing or no health insurance. A third had injected drugs other than hormones, and twice that many had shared syringes. And -- as Cauley keeps bringing up -- more than a third had HIV.
Cauley mirrors the courage and the sharp wit I frequently encounter in the transgendered community. When your very existence challenges gender roles and rules that the rest of the world takes for granted, you can't help but become a social critic. (A personal note: My lover is an FTM transsexual. As a witness to his transition, I can testify that he didn't simply change from female to male -- he changed from a depressed and surly person into someone who is self-accepting, loving and happy. And I too have struggled with gender dysphoria.)
Anyone who has come out as gay or bisexual should be able to relate to the high that Cauley describes when she got out of the Navy and decided to "stop trying to be a man for my family." A Vietnam-era vet, Cauley served stateside as a medical corpsman and narrowly escaped being kicked out of the service in a gay witch-hunt. "I related to men as a woman," she says. "There was nothing homosexual about my relationships with men. It was very confusing." At 26, Cauley found a gender-identity clinic in San Diego and started taking estrogen, which promoted breast development and a more female body shape. She grew her hair, got a new wardrobe and told her lover to call her by a female name and pronouns. Cauley's lover told her she was making a mistake, but the memory of those days still makes her laugh. "As I experienced my femaleness for the first time, I reminded myself of Marlo Thomas in That Girl twirling around downtown," she says. "I'd twirl around on the street not knowing my makeup was on wrong and not caring. It was the most free time in my life."
Transgendered people may be the most hated sexual minority in our culture. Few nontransgendered people wish us well on our journeys toward self-discovery. Sexologists don't know why an estimated one in 50,000 genetic males and females has a deep, persistent conviction that his or her gender identity doesn't match his or her body. "I can't remember a time when I didn't want to be a woman," Cauley says. "When I was a child, I used to pray to wake up and be right -- 'right' being a girl." A frightening and baffling conflict whose source is likely biological, gender dysphoria has only one officially sanctioned solution: medical treatment, including lifelong hormone therapy and surgery. Sex-reassignment surgery has been done for 40 years, but most insurance companies still consider it experimental or elective and do not cover it. It's a rare employer who will keep someone who is changing sexes. Faced with raising the $20,000-plus for hormone treatment and surgery, many MTFs wind up working in the sex industry, where preventing HIV tends to be a lower priority than survival.
Survival sex is hard to do in a healthy way. But sometimes it's hard for transgendered people to take precautions even when the sex is romantic rather than commercial. "The people we have sex with are sometimes the only people who validate our gender identities," says Matt Rice, a gay FTM who worked on the TCHP study. "When a partner has already dealt with your trans status and your different body and all that other crap, you might be willing to trade safety for love."
The TCHP study confirmed these conditions, and Cauley's road has been as rough as its statistics. She became a prostitute soon after going on female hormones in 1978. She had a variety of other jobs, too -- nursing, modeling, hairdressing and doing makeup for a theater company. Ten years later, while living in New York City, "I worked as a stripper at a sex club on 42nd, the Show Palace. I was a high-class hooker," she says, dropping her gaze. "I became a low crack addict." She wound up crashing in a van near the Hudson River with a group of other addicts. In 1989, after getting arrested and beating a jail sentence, she fled to Evansville, Indiana, where her mother and stepfather lived at the time. That was when she found out she was HIV positive. Doctors at the local Veterans Administration (VA) hospital told her she had five years to live.
Cauley may have beaten these odds, but many transgendered people do not. Though HIV education for transgendered people is improving, AIDS service organizations (ASOs) still have a long way to go. Cauley says that increasing the visibility of MTFs is a vital first step toward addressing this crisis. "In all the drug ads for people with HIV, you never see a transgender," she says. "We have no face. We are the invisible thing." Many ASOs include transgendered people in their mission statements but have a poor track record. Transgendered clients have often experienced so much discrimination that they don't trust agencies if there aren't any transgendered people on staff.
Miss Major, an African-American MTF transgender who formerly ran a drop-in center at the Tenderloin AIDS Resource Center (TARC), does not have that credibility problem. The Tenderloin is a poor neighborhood in San Francisco with a lot of drug traffic and street prostitution, including transvestites and MTF transsexuals. To get to TARC, I had to dodge broken bottles, empty crack containers, small groups of drunken men and a large number of distraught people talking loudly to themselves. But once I passed through the front door of Major's domain, I found a welcoming room, with big couches, pretty posters, a stereo and TV, a small library of books, and other amenities. It was early in the day, but a few transgendered women were already there.
Major, who jokes that she identifies as "a gay man with tits," created this sanctuary. "Trans folk can't open a front door to let a breeze in because people point at you and call you a freak," she tells me. "We have to get a nerve together to run to the corner store to get a soda. And if you're in a shelter, the crap doubles."
Major, 55, has raised nine children, many who were "trick babies" born to other prostitutes. She has lost a lover and countless friends to AIDS, which, she says, has inspired her to provide "safer-sex messages, condoms, lube, dental dams and all the information." Major elaborates, "For the girls who do drugs I have information on how to do them safely, to not shoot up inside sores. If I have to, I show them how to do it. I let them know where the needle exchanges are. If they can't deal with it because of attitude from the people there, I go with them."
But she is up against formidable obstacles. "My TS girls who are prostitutes are not concerned about HIV because it's just what happens." Their rationale? "If I can make an extra $100 letting a guy fuck me without a condom, I can pay rent for three days and get a hot meal instead of a sandwich from 7-Eleven."
If the situation is dire in "free and easy" San Francisco, where the civil rights of transgenders are protected by law, it is far worse in New York City under Mayor Rudolph Giuliani. Javid Sayed, a project coordinator at the Asian and Pacific Islander Coalition on HIV/AIDS, reports that stepped-up police crackdowns have shattered transgendered sex workers' networks, making it harder for outreach workers to find them.
Jennie Casciano, a program coordinator for New York Peer AIDS Education Coalition, which works with street youth, points out that waves of moralistic sex-industry restrictions give bashers permission to act out. Casciano says that anti-transgender street violence in New York is "completely out of control" -- in the last two years, three of her agency's transgendered outreach workers have been murdered. In the face of such hostility, transgendered people are wary of outsiders from agencies, which makes it harder to spread prevention information.
Like any other group, transgendered people have myths about HIV. For example, some postoperative MTFs have told outreach workers that their surgically constructed vaginas are internal condoms resistant to HIV. "This community has a tendency to believe that since we're not gay, and AIDS is a 'gay disease,' we're not at high risk," Major says. Prevention becomes even harder when educational materials fail to show sexual activity that matches transgendered people's lives. Rosalyne Blumenstein, director of New York City's Gender Identity Project (GIP), makes sure that GIP's brochures acknowledge the fact that many transgendered sex workers still have penises. "We have information on how to put a condom on a phallic woman," she says. "Many transgendered women didn't see literature pertaining to who they were, so they would feel shame about their genitalia."
When Major is able to persuade a client to make a change that could save her life, she says, it's because "the girls" know that as a transgender and a former prostitute, she "gets" it. Major says that many AIDS agencies claim to provide services to transgendered people "because right now transgender is spelled with invisible dollar signs. If they want state or federal money, they will talk the talk but not walk the walk." She bitterly sums up the transgender dilemma: "We're at the bottom of the totem pole. Don't be at the bottom of the gender hierarchy and then have HIV. People think, 'Yeah, they should have it, and that bitch should die.'"
Relationships between transgendered people and those in the medical profession are complex. Most doctors and psychiatrists shy away from the controversy surrounding sex reassignment and refuse to treat gender dysphoria entirely. The medical professionals who will prescribe hormones or perform the surgery are sometimes perceived as allies, sometimes as obstacles, because it is within their power to withhold treatment from TGs judged unsuitable for transition. These decisions can be completely arbitrary -- patients were considered too tall or unattractive, or they had flunked a psychological test. A transgendered person who comes out as gay or bisexual also runs the risk of being denied treatment. There's a lot of anger in the gender community about cost of the surgery, and many doctors with a transsexual clientele are seen as hacks or profiteers. On the other hand, there are physicians and progressive mental health professionals who risk their reputations by advocating for transgendered people. When a TG person with AIDS is trying to decide how to deal with medical needs, this complex baggage influences that process.
Edward S. Cheslow, MD, who helped write the GIP brochure, has treated HIV positive transgendered people since the epidemic began. "Working with someone going through gender transition is a joyous part of medicine," Cheslow says. "It's very similar to feelings that obstetricians have about facilitating birth. In comparison to the feelings of failure that generally came with treating HIV, it was a welcome relief." But very few doctors share this view. "As far as educating medical professionals, it's difficult to get people to think about gender at all. Transsexuality needs to be depathologized," he says. Cheslow is particularly concerned about the dearth of research into how protease inhibitors interact with hormones, especially because estradiol, a female hormone, is known to lower Viracept levels. "This population is always on the brink of not surviving," Cheslow says. "This kind of medicine is frontier HIV care."
It is easy to feel helpless when we are faced with a social problem of such enormity -- the only antidote is activism, fueled by a compassionate desire to end human suffering. Blumenstein speaks movingly of the benefits that transgendered people can gain from getting hooked up with their own community. "People of transgender experience used to not seek treatment for HIV," she says. "Or if they were receiving treatment, the hospital would be in an uproar about where to put them or what bathroom they should use, so many would just leave. But people are coming out and a little more visible. Most of our work is about educating people on how to love themselves. And that's the best HIV prevention you could do."
Cauley has been putting this into practice, advocating for herself and other PWAs ever since she found out she had HIV in 1989. At the time, she was in the VA hospital with hepatitis and a high temperature. "The people were nice, but they were freaked out by me. They had never been around a transgender before -- and certainly not one as flippant and outgoing as myself." Cauley cites her sense of humor for getting her through the tough times -- it's one of her survival skills, to be out there and charming and just go right past and over the opposition. Cauley eventually lobbied to be appointed to the veterans affairs commission to update anti-HIV treatments in VA hospitals so that all veterans would receive state-of-the-art care. She recently stopped taking her own Viracept/Viramune/ddC combo because of severe lipodystrophy. Her CD4 cells are at 645 and her viral load is 345. She exercises a lot, takes hormones and vitamins, and feels good, but if her viral load goes up, she may start a new combination.
Cauley is currently working to get nonprofit status for her new agency, Transgender AIDS Advocacy Advancement Peer Project, a place for transgenders to get a full spectrum of services, including housing, job training and drug counseling. Despite being "thinged" for most of her life, Cauley's spirit remains optimistic. "I have hope for the future -- that they will find a cure, that transgenders will no longer be devalued," she says. "Because I think it's the world's diversity that makes it a better place. People who have prejudice just need to get over it."
All Aboard the Tranny Train
Transgender activists don't have to be doing it all for themselves -- outreach programs like New York City's Gender Identity Project (GIP) offer self-empowerment skills as well as educational resources for ASOs looking to expand their services. "We need to educate ASOs, get involved and speak out when our needs aren't being met," says Brenda Thomas, founder of Transgender AIDS Initiative League (www.tail.org/). Reach out to these groups for more information:
Gender Identity Project (GIP)
1 Little W. 12th St., New York, NY, 10014 212.620.7310
Positive Health Project (PHP)
301 W. 37th St., New York, NY, 10018 212.465.8304
Tenderloin AIDS Resource Center:
187 Golden Gate Ave., San Francisco, CA, 94102 415.431.7476
Transgender Education Network:
100 Boylston St., Suite 860, Boston, MA, 02116 617.988.2605