I was at a national community meeting when I heard Celeste Watkins-Hayes, PhD, of Northwestern University, read from her latest book, Remaking a Life: How Women Living with
HIV/AIDS Confront Inequality. Through the stories of the women she interviewed, Dr. Watkins-Hayes shows how trauma transmuted to power by linking socioeconomic problems with medical advances, political empowerment, and human resiliency. In August, ViiV Healthcare invited Dr. Watkins-Hayes to lead a webinar with women based on the stories in her book. Although Dr. Watkins-Hayes wrote about Black women, it’s a universal story of moving from stigma to personal—and political—power.
Stories have been edited from both the book and the webinar.
Injuries of inequality
Dawn’s story was read by Chicago native Evany Turk, now national field organizer for the Positive Women’s Network-USA.
“If it wasn’t for HIV, I’d probably be dead.”
Dawn grew up in a Black working-class neighborhood on Chicago’s West Side in the 1970s and ’80s. Racial and economic residential segregation and lack of investment by government and private business limited upward mobility for residents, especially young adults.
When the sexual trauma of Dawn’s childhood collided with the structural blows and deteriorating safety net afflicting her community, the effects were combustible.
Dawn moved in for a few weeks with the person she most idolized, her 19-year-old stepsister Jackie. Jackie used intravenous drugs and dated the neighborhood dealers who maintained her supply. Dawn followed suit, and her addiction grew. Her habits became a source of deep disappointment and sadness for her parents, who knew nothing about the molestation that was at the root of Dawn’s pain. Their lack of awareness fueled Dawn’s sense of anger and betrayal, and she continued to distance herself. After exhausting all of her invitations to sleep on the couches of various family members and friends, Dawn ended up on the streets.
“My village wasn’t safe,” she said through tears.
After her HIV diagnosis, she entered a home for women living with the virus and addiction, this time staying [at a housing facility] for two full years to become strong enough to make it in the world without numbing herself with drugs. She began systematically gathering the tools she would need to change her life’s course.
“I realized that doing drugs was killing my body more than HIV. I decided that I wasn’t ready to die. I didn’t want HIV to take me out. So, I had to stop getting high.”
Dawn’s personal story has also led her to political work. Since leaving St. Mary’s, Dawn has been a prominent voice in the HIV community and a trusted leader. She has traveled the country speaking about HIV prevention, met with public officials to advocate for increased funding for AIDS programs and services, and served on the boards of prominent national and local AIDS organizations.
“The only risky behavior I do now is telling a politician what I really think of him.”
Rising intracommunity violence, a growing drug epidemic, declining funding for healthcare and other community services, and a precipitous rise in mass incarceration that warehoused many friends, family members, and neighbors made the barrier between life and death increasingly porous for young people like Dawn.
The environmental and personal turmoil in Dawn’s life was occurring precisely when the AIDS epidemic was gaining an early and strong foothold in vulnerable communities, quietly taking up residence in neighborhoods and networks, and weaving itself into the epidemiological fabric.
“If it wasn’t for HIV, I’d probably be dead.” In Dawn’s assertion, she is reflecting on the chokehold that was slowly but steadily killing her. Addiction, with its roots in Dawn’s history of childhood sexual abuse, was shaping every aspect of her life, from her tools of economic survival to her residential choices to how she formulated, sustained, or damaged relationships with friends, family, and intimate partners. Dawn’s broader environment, lacking many opportunities and resources, also posed obstacles that she addressed through a variety of coping and survival strategies that were destroying her health.
When systems fail and women’s burdens are too heavy
Tanya’s story was read by Kimberly Smith, MD. A longtime HIV specialist in Chicago, Dr. Smith is now head of Research and Development for ViiV Healthcare.
Forty-year-old Tanya is a mother of four children. She lives in Phoenix House, an apartment building for people living with HIV, that has suffered for years under the weight of poor institutional staffing and meager funding…
Tanya’s story reflects what can happen when a breakdown in the safety net meets a client-facing multiple barriers.
Tanya’s world effectively came to a halt with the incarceration of her child.… Tanya’s challenges did not stop there. Diagnosed bipolar at 16, she had been struggling ever since with her mental health. HIV prevalence is much higher among women suffering from mental illness; the mental instability and debilitating stigma make them vulnerable to drug addiction and high-risk sexual experiences.
After waiting an hour and a half past her appointment time, Tanya was finally called in to see the doctor. “Your numbers,” he said with deep concern, “aren’t so good. Stress will wreak havoc on your immune system. You have to find ways to deal with what is going on without sacrificing your health.”
It is a nebulous term for some: social determinants. But as Tanya’s story demonstrates, poverty, family crises, unaddressed mental health issues, a broken and inefficient criminal justice system, and weak social support networks can be devastating to health. These issues, which confront significant numbers of people living with HIV, can severely undercut even the most promising of medical advances and scientific discoveries.
Dr. Smith on Tanya’s story
This story recalls so many patients I saw. So many women have families and the family came first. It led to disease progression. There’s the saying that ‘you can’t take care of anyone else if you can’t take care of yourself.’
The doctor in the story—those were also my words to my patients.
Now I’m with a health company—to change the tons of pills needed. But even if we had the best treatment in the world, people need to address stigma and make HIV a smaller part of their life instead of dominating it.
Dr. Watkins-Hayes asked Dr. Smith about the role of institutions.
The social safety net doesn’t have enough for the meds of the folks who come in. And that’s just the folks who even make it there.
You have to start with people where they are. I think peers are so important at the beginning, in dealing with that self-stigma.
One thing that stands out was that hour and a half that you fall behind. My patients really appreciated that one of those crisis times might be theirs. Institutions are not devoted to spending the real-time often needed.
Claiming space in HIV activism
Activist Tiommi Luckett read her story. She is now the Communications & Training Assistant of the Positive Women’s Network-USA.
Diagnosed HIV-positive in September 2012, I was fortunate to receive treatment, and within six months had an undetectable viral load. A few years later, a nurse in my doctor’s office asked if I would be interested in speaking at an event in Washington, D.C., on Medicaid expansion in my home state of Arkansas. I said yes, but had no idea what was in store for me. A couple of months after my visit to Washington, I was asked to speak at other venues on behalf of transgender rights. From there, I attended the HIV Is Not a Crime Training Academy, a gathering of activists, legislators, lawyers, people living with HIV, and other experts to discuss and plan ways to reform and modernize laws that criminalize HIV.
My work in the HIV and transgender communities continued to grow. I serve as a blogger and advisory board member for various HIV and transgender organizations and held a seat on the Arkansas Ryan White HIV planning group. I did it to get my words out there. People related. Women relate to what I am saying. It started to break down the differences in our lived experiences, and it brought me closer to a community of people that I trust.
I always put up a façade that I was happy. Then I said, “You know what? It’s time for me to live for me. I can’t live for how people want me to be.”
Luckett also talked about being invited to speak at the White House with a coalition of women in 2016; she wrote about the experience, “From the Big House to the White House,” for The Well Project’s blog, “A Girl Like Me.”
Evany Turk: Eventually, you get tired of being tired. Tired of the stigma, tired of the denial. That’s when you turn it around. That’s when I gained purpose.
You learn about it. You learn about treatment, and that you can’t transmit it [if you have undetectable viral load]. That made me less afraid of the stigma and allowed me to live my life. I’m going to do the things in my life that I want to do. I’m going to do the things in my life that I love to do.
Tiommi Luckett: I really thought I was alone. When I saw that others experienced these traumatic experiences—that it was common—I was angry.
Social media—that was my community. That was my promise to my Higher Power, that I would help others.
This work is so much bigger than me. It encompasses all of us. I got tired of talking about me. What’s next?
There’s no more weight holding me down about being trans or being diagnosed with HIV. I’m a whole person. HIV is just a part of who I am.
Activist Gina Brown, based in New Orleans, co-facilitated the session. She asked, “If we had a magic salve, what would you put in it?”
Celeste Watkins-Hayes: The first thing I would add is protection from sexual trauma. I was surprised at the number of women who experienced sexual trauma, which is where ‘I’m not worthy” comes from. [Dr. Watkins-Hayes and her research team interviewed more than 100 women over 10 years. Sixty percent of them had experienced childhood sexual abuse.]
One of the things I wanted to highlight is people getting involved in the political system in a way that helps all of us—the willingness to speak truth to power.
Evany Turk: One of most important things is you don’t have to know anything but your story, what you’ve been through. What do you need? You don’t have to disclose.
The more someone shows up, the more comfortable they get.
Kimberly Smith: I would add the need for safe spaces. I mean, clinics that are safe. I mean housing that is safe.
The reality is that you can’t get the services you need—the counseling, the health care, and everything else—if you are not in a safe space.
From Remaking a Life
The extraordinary conversion of HIV/AIDS from an inevitable death sentence to a manageable chronic illness in well-resourced countries like the United States is not only one of the most noteworthy medical achievements of the past 35 years, it is also a significant social achievement. … Perhaps one of the most important but underrecognized outcomes of this mobilization was the emergence of the extensive HIV safety net of human service providers and other entities who would prove vital for individuals confronting difficult circumstances by offering four things:
- Access to health care
- Modest economic assistance
- Extensive social support, and
- A path to political and civic engagements