Healing the Hurt
by Rita Rubin
UCSF established the Women’s HIV Program in 1994. Machtinger came on board in 2000 and became director in 2004. People in the program can talk about housing issues with their social worker, child-rearing with the family case manager, medications with a pharmacist and preventive health with their gynecologist—all in one morning. Despite the comprehensive care provided by the program, though, Machtinger noticed that a fifth to a quarter of the patients were faring poorly. “We realized there was something missing in our model,” he says. “It was very frustrating.”
That doesn’t surprise UCLA psychologist Wyatt. “These are people who usually don’t want to go to the doctor,” she says. “They’re very suspicious of people touching them and asking them questions about their histories.” Even when it’s performed by a doctor, a pelvic or breast exam might trigger post-traumatic stress disorder, she says, adding that “a lot of women say taking [their daily HIV] medicine reminds them that they are positive,” stirring up unwanted memories of how they contracted HIV.
To identify factors linked to why people fail to stay on HIV treatment and why they engage in risky behaviors that could spread the virus (and expose positive people to additional infections), Machtinger and colleagues at UCSF and Massachusetts General Hospital analyzed data from 113 HIV-positive and transgender and non-transgender women. In an interview with a trained female counselor, each woman answered 97 questions about an array of characteristics and behaviors that could be associated with their health and whether they were likely to engage in behaviors that could infect others. “What we came up with was a big surprise to us,” Machtinger says. Being threatened or abused or subjected to violence within the past 30 days was the single biggest factor linked to both risky behaviors that could spread HIV and to the failure of antiretroviral therapy. “A light went on for me and our program,” he says. “It wasn’t just any trauma that resulted in these outcomes, it was recent trauma. Recent trauma is something that we might be able to do something about.”
Toward that goal, Machtinger’s program conducted a pilot study of a program called Seeking Safety, a cognitive-behavioral therapy developed by a Harvard psychiatrist to treat people with post-traumatic stress disorder (PTSD) who are also addicted to drugs and alcohol. The UCSF researchers adapted Seeking Safety to treat HIV-positive transgender women, who have disproportionately high rates of PTSD as well as substance abuse. Machtinger and his colleagues selected 12 of the 25 Seeking Safety modules that they thought would work best for their patients.
Seven women enrolled in the study, and they were asked to attend 12 weekly sessions, one for each module, conducted by two social workers. The modules covered such topics as “PTSD: Taking Back Your Power,” “Healthy Relationships” and “Taking Good Care of Yourself.” Six of the seven women completed at least seven sessions, and at the end of the study, participants’ PTSD, sense of HIV stigma, and drug and alcohol use had declined overall. While the pilot study found Seeking Safety showed promise, the researchers say larger studies are needed to fully explore its potential in HIV-positive women, both transgender and non-transgender.
Even if an HIV-positive transgender woman is open about her status and willing to seek care, she’s unlikely to find it—even more so than a non-transgender woman, says JoAnne Keatley, a transgender woman who directs the Center of Excellence for Transgender Health at UCSF. “If you were a transperson living with HIV in most places in this country, it would be very difficult to find a physician who has the requisite skills to care for your medical needs,” Keatley says. “They need help kind of wrapping their brains around dealing with issues of different-bodied people.”
When transgender women are victims of trauma, law enforcement officials often side with the perpetrators who defend themselves by saying, “Oh, you know, this is a dude that fooled me,” Keatley says.
Cecilia Chung, a trans woman who now serves as a health commissioner in San Francisco, says she contracted HIV when raped by another jail inmate. Chung had always known she wanted to transition to becoming a woman. Born in Hong Kong, Chung moved with her family to San Francisco in 1984. After graduating college in 1991, Chung, now 47, began the process. “I decided that was something I could not hide from myself anymore.”
Neither her family nor her employer accepted the changes in Chung. “I had a fallout with my family because they did not know how to deal with my decision to transition,” she says. “Also, because there were no legal protections for transgender people, I quickly lost my job.” She had been a court interpreter. “I think some of the judges became uncomfortable.” Chung was on the verge of becoming homeless. “It was pretty overwhelming in a short period of time,” she recalls. “The change for me from being male to coming to my womanhood was a very painful journey.”
She turned to crystal meth, because her fear of needles prevented her from using injection drugs. She lived in cheap hotels in bad neighborhoods. Sometimes she slept in her car, when she still had a car. To survive, Chung depended on what she calls “the street economy,” which is what led to her arrest.
Still, Chung feels lucky. She learned she was HIV positive not long before the first HIV drugs became available. And she lives in San Francisco, whose city health department for years has run Transgender Tuesday, a clinic that provides care for transgender individuals.
Cassandra Steptoe and Valerie Holmes are proof that helping HIV-positive women deal with and recover from trauma can improve their lives in multiple ways.
About three years ago, Holmes went through a program called Healing Our Women, developed by UCLA psychologist Wyatt for HIV-positive women who’ve experienced trauma. Healing Our Women is made up of 11 weekly two-hour sessions led by specially trained facilitators as well as peer mentors—other HIV-positive women who’ve been through the program. Participating in the group enabled her to open up about her past, Holmes says. “In order for me to get better, I needed to let it go and try to forgive the people who had done what they did to me.” She learned how to build skills and solve problems. “It was about me dealing with me, so I could get to know how to deal with my partner or partners.”
After completing the sessions, Holmes facilitated Healing Our Women groups through Project Street Beat, which is Planned Parenthood of New York City’s HIV prevention and care program for women, men and teens who live on the streets. Through the project, she also visited clients in their homes and escorted them to the doctor. “I made sure that they have what they need.”
Steptoe, who had hidden her HIV status for so many years, has now told her story to thousands through performances with a group of HIV-positive women directed by performance artist Rhodessa Jones. “Dr. Eddy,” as Steptoe calls Machtinger, came up with the idea of a collaboration between UCSF’s Women’s HIV Program and the San Francisco–based Jones. Jones is founder and director of the Medea Project, which her website describes as a theater workshop “designed to achieve personal and social transformation with incarcerated women.”
“I have a hypothesis that nondisclosure, not being out, puts women at risk for further victimization,” Machtinger says. “There’s so little visibility of HIV-positive women out there. Now we have these women who have come out publicly.”
Machtinger introduced Steptoe to Jones several years ago. “I didn’t know anything about performing,” says Steptoe, who can now be seen on YouTube.
The more she tells her story, Steptoe says, the more empowered she feels. In the past, she says, she’d “ride [relationships] until the wheels fall off.” Support from Jones and her fellow performers gave her the courage to leave her second husband, an HIV-negative man she’d met at Narcotics Anonymous. He had started to use drugs again and beat her. The jubilation in her voice was clear when she said their divorce was final in June. “I don’t have to live with shame. I don’t have to live with stigma,” Steptoe says. “Having HIV is not a crime. It’s a health condition.”
Returning to Health
If you are living with HIV and violence, there are many ways you can get help. For example, Deon Haywood, executive director of Women With a Vision, says story circles, a form of consciousness-raising or group therapy, encourage women to relate their experiences and hear from others in similar circumstances. “Story circles,” Haywood says, “center the voices of people who are often made invisible in our society. They engender a sense of community and promote healing and collective action.”
Here are a few resources to start with. For more in your area, search the directory at poz.com.
Resources mentioned in this story:
Women With a Vision
Healing Our Women
Project Street Beat
Center of Excellence for Transgender Health
University of California at San Francisco
Other national resources:
National Domestic Violence Hotline
National Center for Transgender Equality
The Well Project
Positive Women Forum
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Search: Deon Haywood, Cassandra Steptoe, Valerie Holmes, Cecilia Chung, transwomen, domestic violence, trauma, molestation, abuse
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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.