Healing the Hurt
by Rita Rubin
A recent epidemic of attacks on women, transgender women and people with HIV exposes a link as toxic as the virus itself: Trauma not only fuels HIV, it also makes living with it harder. But HIV-positive women and their allies in the realms of science, medicine and social justice are ready to fight back—with programs, education and lifesaving advocacy.
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In the middle of the night on May 24, fire ripped through the offices of Women With a Vision (WWAV), a New Orleans grassroots organization founded in 1991 to respond to HIV/AIDS in communities of color. The flames destroyed the group’s offices, forcing it to relocate temporarily to a church. Deon Haywood, WWAV executive director, immediately called the fire a hate crime, and after a two-month investigation, police and fire department officials agreed, categorizing it as aggravated arson.
HIV and women’s health activists see the fire as one in a series of violent attacks on women and transwomen, particularly those of color, who are advocating for their rights. The fire did more than destroy property; it also served as a cruel reminder of women’s vulnerability and the violence they experience. “Since the attack on our office, I feel that many of us with Women With a Vision have revisited every trauma that we’ve been through,” Haywood says. “Violence seems to be this normal thing, because we’re used to seeing it.”
Yet, few health care providers or advocates are putting the pieces together, Haywood says. “I just feel like people aren’t talking about it enough,” Haywood says. “Most of our movements are separate. The HIV/AIDS community is over there. Domestic violence is over here.”
That may be beginning to change, as more women speak up—and some researchers seem to be listening.
Cassandra Steptoe is one woman who is finding her voice and telling her story. In 1987, when Steptoe was jailed for prostitution and illicit drug use, she took the local health department up on its offer of HIV testing to inmates. “I’m having unprotected sex, I’m sharing my needles—of course I got tested,” she recalls. Still, she was stunned to learn she was positive.
“Many nights I used to just get underneath the covers and cry,” says Steptoe, now 56. “The only thing I could do was continue to shoot dope, because I thought I was going to die. I didn’t tell my kids. I didn’t tell my ex-husband. I didn’t tell anybody.”
She avoided seeing a doctor until 2001, when she fled San Jose, California, for San Francisco to escape a drug dealer who’d put a gun to her head.
Another woman speaking up is Valerie Holmes. Drawn by payments handed out by New York City public health groups, she got tested several times under fake names starting in 1999. “But I never went back to get my results,” says Holmes, now 46. “I was actively using. I knew if I would have found out [I was positive] I would have had to tell my partner, and that probably wouldn’t have been good at that particular time.” He abused her, verbally at first, physically later.
Finally, in 2006, Holmes decided she was ready to face the truth. “My life wasn’t bad, but it wasn’t really where I needed it to be.” She marched into a clinic across the street from where she lived in Mount Vernon, New York. “I just asked for everything.” Holmes asked to be tested for HIV and any other sexually transmitted infection. She was positive for HIV. Holmes says she smoked crack cocaine but never injected drugs, so she believes she contracted the virus through years of sex with a variety of men. Her partner, who was HIV negative, accused her of cheating on him.
Holmes and Steptoe live on opposite coasts, but they’ve traveled similar paths. Both were molested as children and abused by men as adults. Holmes put off learning her HIV status, while Steptoe kept hers secret for years. Their stories illustrate the interconnectedness of violence and HIV in women, a relationship that researchers are beginning to recognize can affect their health for years.
Scientists have long known that sexually and physically abused women have a greater risk of contracting HIV. Now, a growing body of research shows that once they are positive, traumatized women don’t do as well in treatment and are more likely to engage in risky behaviors. “It appears that trauma, especially in women, is a key driver of every aspect of the epidemic,” says Edward Machtinger, MD, Steptoe’s doctor and director of the Women’s HIV Program at the University of California at San Francisco.
The estimated rate of intimate partner violence among all U.S. women is about 25 percent, shocking in itself. Among HIV-positive women, though, the estimated rate is more than twice that, according to Machtinger.
“How can you have safe sex in an unsafe relationship?” asks Anna Forbes, who has long worked in HIV prevention. “If asking him to put on a condom gets you a fist in the face, it’s not going to work.”
Despite the growing awareness, fewer than 10 percent of all providers of HIV services routinely screen for intimate partner violence, according to a 2009 report from the federal Health Resources and Services Administration.
“I think one of the reasons providers don’t ask about abuse is they don’t feel comfortable or confident about how to treat a patient who’s been abused,” Forbes says. “You have to assume that [abuse] is part of the constellation [of issues in a person’s life] until it’s ruled out.”
Providers’ ignorance about how best to care for and treat HIV-positive women isn’t surprising, Forbes says. “HIV started out in the U.S. as a men’s disease,” she says. “The AIDS world is still working off that paradigm and still isn’t adapted to working with women.”
But women represent a growing proportion of the HIV/AIDS epidemic in the United States. Today, they account for at least 27 percent of all new diagnoses, up from 8 percent in 1985 and 14 percent in 1992, according to Machtinger. And, he says, more than three-quarters of women who are newly diagnosed with HIV are black, like Steptoe and Holmes, or Latina. Studies show that black women, both positive and negative, also experience disproportionately high levels of violence.
“Why is there less funding right now for people with HIV? Why is there less press about the epidemic?” Machtinger asks, then offers an answer. “I would have to say [it’s because] the people being infected right now are much more disempowered.”
Machtinger’s institution recognized early on that its AIDS clinic wasn’t meeting women’s needs. “The AIDS clinic was pretty much designed for men,” he says. “The women who were coming in were very different. For the most part, we were seeing poor women, women who were under-educated.”
And, compared with men, women were less likely to acknowledge they were living with HIV. “That made it very hard for them to take their medicines, to come to clinic,” Machtinger says. ”It made it very hard for us to refer them to all of their needed services. They didn’t want to go through being outed and feeling stigmatized. It was very hard for these early HIV-positive women.”
Even today, the stigma of HIV weighs more heavily on women than on men, Forbes says. “With women, it’s still much more ‘you must be a whore or a tramp,’” she says.
Besides, women have too much other stuff to worry about than their own health. “It’s almost part of the culture of being female,” says WWAV’s Haywood. “You automatically never think about yourself. There’s always somebody else we’re caring for.” A violent partner can wield a woman’s HIV status like a weapon by threatening to take her children away if she speaks out about being beaten, Haywood adds.
Certainly, not all victims of intimate partner violence are women. But “women have a more submissive role in this world,” says Gail Wyatt, PhD, a UCLA psychologist who has pioneered research into the relationship between violence and HIV in women. HIV positive or not, she says, “we usually have more dependence on a partner for our survival.”
Something as simple as the need for their partner’s health insurance traps some HIV-positive women in abusive relationships, says Kat Griffith, a 42-year-old Metamora, Illinois, woman who contracted HIV from her college boyfriend and was diagnosed 20 years ago.
“A lot of times, men will use their medications against them, like holding them for ransom,” says Griffith, who helped the National Network to End Domestic Violence develop a curriculum to teach health care providers about the intersection of violence and HIV/AIDS.
Griffith’s parents divorced when she was 5, and she says, her mother was either drunk or working throughout most of Griffith’s childhood. While the man who infected her was not violent, Griffith says, her high school boyfriend was. “There is no question in my mind that the traits that led me to the violent relationship are some of the same traits that kept me from protecting myself,” she says. “I could have easily contracted the virus as a teenager, when I had such low self-worth that I would do whatever drugs someone wanted me to do. I was not taking care of myself. I was a bit self-destructive.”
Her college boyfriend mistakenly thought he’d been tested for HIV when he underwent surgery before he met her, Griffith says. Although “he [slept around] before he met me” and didn’t pressure her to have unprotected sex, they eventually stopped using condoms, a move Griffith thought significant enough to note in her journal.
They learned he was HIV positive in 1992 when he was diagnosed with AIDS. Griffith tested positive a few weeks after that; her boyfriend died in 1994.
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comments 1 - 4 (of 4 total)
Luis Marcus Morales III, San Antonio, 2012-09-22 05:12:47
Because HIV/AIDS is an ever evolving disease,spanning across all cultures in the United States; I wish to extend a loud round of applause to the Women in this article that have the courage to exert their agency. Clearly the voices heard are not those of victims, they are the foundation of a socio-political, socio-economic, and a newly framed gender schema. The message and self -determination of these abused women must rise to the ears of hegemony who have not lived their experience.
Loren Jones, Berkeley, 2012-08-17 09:58:28
Thanks so much for this important article about an issue that has been silently festering for so many years. How can a woman improve her health, when her life is so filled with emotional pain that many days she may wish herself dead anyway. Many of you know that this was a major theme at the 2012 International Aids Conference. This is the year for American women to take a strong united stand for action / services during the 16 Day Campaign to End Violence Against Women in Dec. Loren Jones-pwn
Kat G, , 2012-08-16 16:29:50
I have been thinking a lot since giving this interview... it is interesting to me that I put so much responsibility for my path on my mother…perhaps because she and I lived together and had a tumultuous time during my youth. In a lot of ways we were both out of control. Again, blaming women aka mothers for just about everything. What I omitted, and in retrospect, more than likely had a MUCH larger impact on the trajectory of my life was my relationship, or lack there-of, with my father. He and my mother maintained an OPENLY hostile relationship while I tried to grow up, and I was often used as a pawn in their arguments. This even happened into adulthood. He was not a consistent presence in my life, and when he WAS present, he attempted to control aspects of my growing up that he had walked out on. There are too many stories around this topic to tell, but THAT is probably the most re-occuring trauma I experienced growing up. It told me I was unworthy of his (a man) love unless I behaved and appeared a certain way, it told me that he disapproved of almost everything, and played a HUGE role in the creation of my self-esteem.
Our relationship continued to be off and on until the day he died this past December. That relationship exemplified that despite abuse, one should always try to forgive and go back. It was the model for which my relationships were formed, to a certain degree and it has taken an extreme amount of work on my part to overcome that to the best of my ability.
As a sidenote, my mother has now been in recovery for almost the entire time I have been HIV infected.
All of our stories show that these are things that can be overcome, but we need to start early. Fighting abuse is one way to ensure an AIDS free generation of Women and Girls.
Jazzie Collins, San Francisco, 2012-08-14 14:00:07
comments 1 - 4 (of 4 total)
I'm a transgender female who live in san francisco, I'm living with HIV because i have HIV do not mean that my life is ending nor will i set around and do nothing. I will go out to other community of color and education them.