“I saw a need among people I care about,” says Dr. Jae Sevelius, a clinical psychologist and associate professor at the Center for AIDS Prevention Studies (CAPS) at the University of California San Francisco, "and wanted to engage the community to help address it." She recognized that transgender women, especially transgender women of color, were at extremely high risk for HIV, but very little research had been done on this population.
The small amount of available data pointed to rates of infection far higher than for the general population, and even higher than for other recognized risk groups: one NIH study showed that more than half of black trans women were living with HIV. Such alarming statistics demonstrated how crucial it was to address these health disparities with transgender-specific research and interventions. Dr. Sevelius got to work filling that gap.
Jae leads several research projects at UCSF’s Center of Excellence for Transgender Health to promote increased access to care for transgender women. She has secured national and state funding to focus on developing culturally relevant programming and interventions to promote health and wellness of transgender women of color living with or at higher risk of acquiring HIV. One such project is Sheroes, a sexual risk reduction and empowerment intervention developed in collaboration with and for transgender women of color.
“What makes Sheroes so important is that it is trans-specific,” said Aria Marcelle Sa’id, lead facilitator and recruiter for the project. “The CDC [US Centers for Disease Control and Prevention] has no evidence-based intervention aimed at stopping the epidemic in the trans community.” Sheroes is staffed by community members with a history of working in transgender health. Clients accessing the project—team members refer to them affectionately as “the girls”—can sense and respond to that.
Zoe Samudzi is the Sheroes project coordinator. With a background in social psychology, she did research in South Africa looking at how dominant constructions of gender impact trans women.
“The COE [Center of Excellence for Transgender Health] is an amazing place to work,” she said. “Many academics studying trans people don’t actually interact with them. We are working so hard to not dehumanize the girls as we try to help them.” She points to work that has been done in trans communities without involving community members in the planning or execution of the programs; much of it shows little understanding of issues central to transgender people. “Even with the best of intentions,” she says, “you can do something that’s more harmful than good.”
“Public health discourse needs to be better. The language we use and the understandings that we have and the ways we go about engaging communities in research are shockingly insufficient for the work we do.” Zoe hopes to change that dynamic.
Empowering staff and clients alike
Other members of the Sheroes team talked about how their work on the project creates both an opportunity for personal growth and a model for clients with whom they interact. Aria talks about her emotional investment in the project. “What’s great about Sheroes now is the feedback we’re getting from the girls…feedback on how empowering it is. It’s become like a baby for me. When we’re facilitating the intervention, I get the reminder—the raw and honest guided discussions are like slumber parties. It’s an amazing thing to have that exchange. And,” she says, “they leave with something. That’s what is so empowering about it.”
Increased visibility and awareness
In recent years, transgender issues have begun to make their way to the forefront of public awareness as trans celebrities like Laverne Cox and Janet Mock have become visible and vocal. When we asked about the impact of this phenomenon, Sheroes staff members had mixed views.
“Visibility is good and bad,” said Aria. “It is not necessarily helping on the ground level. We have to talk about it more. Having a place to start is a good thing. But when you look at the disparities and the poverty that most of us experience…there’s some resentment in the community.” Others echoed the sentiment that celebrities have an easier time coming out as transgender, but they are often out of touch with the realities and difficulties faced by the majority of trans individuals.
There is also the issue of feeling limited by such a focus on transgender identity. “It’s easy in this job to have work define you,” said Aria. “When I first transitioned, I didn’t want this to define me. Now I’m expected to always be the poster child for trans work. Gender doesn’t dictate my entire life.”
On future goals
As the study winds down (funding went through June 2016), what does the future hold for the Sheroes team?
“I’d like to stay in research and move out of the recruitment role and into project management,” said recruiter Akira Jackson. “I don’t see a lot of black women in those roles…and I want to push that. Also start a fashion business.”
Aria reflected on how her own life had changed by working for Sheroes and her vision for a brighter future. “We’re expected to know the community, but in [a] way our lifestyles have changed dramatically, so we’re not as connected to the community. While I’m pursuing my personal dreams, I have to—it’s not immediately ‘giveback,’ but I’m helping the study in hopes that in five years it will change. It’s daunting in a way. People say, ‘I want to be where you are,’ but I want them to be better than me.”