How Theater Helps This HIV-Positive Grandmother Transform Lives

For decades, Cassandra Steptoe felt like she couldn’t talk about her HIV diagnosis with anyone.

"I couldn't forgive myself for getting HIV," says Steptoe, who spent much of her early adult life in and out of jail for shoplifting and burglaries linked to her IV drug use. "But someone told me a long time ago, if you are looking for a reason to feel shame, you can always find it. I learned to look for something else: forgiveness."

For Steptoe, now 59 and a grandmother, it wasn't until her 40s -- after decades of struggling with addiction -- that she finally completed a rehab program and committed to ongoing HIV treatment.

Today she talks openly about that experience onstage, as part of a theater project aimed at inspiring others. The quote about learning to forgive herself is part of an autobiographical monologue Steptoe wrote and performs in a San Francisco theater production of The Medea Project: Theater for Incarcerated Women/HIV Circle.

It was Steptoe's physician, Dr. Edward Machtinger, who first told her about the project. Established by playwright and director Rhodessa Jones in 2008 as an extension of an improvisational production that draws on and explores the experiences of jailed women, the "HIV Circle" focuses on the experiences of women living with the AIDS virus.

The therapeutic aspect of the performance workshop is called peer empowerment, explains Machtinger, an internist and director of the Women's HIV Program at the University of California, San Francisco. The strength and healing Steptoe and others have gained from processing and sharing their stories this way is profound, he says — and can serve as a model for helping other patients deal with psychological trauma.

Medications 'Not Enough'

With the theater group, Steptoe began writing about her experiences and sharing them with a small group of women, some of whom had gone through similar struggles of addiction and histories of incarceration. The process of uncovering her past and making sense of her experiences in a cathartic, supportive environment helped Steptoe end her feelings of isolation.

"Having these women that really love you and support you ... it feels good to have some real friends, 'cause I never had that before," Steptoe says. "We're all sharing something together 'cause we all get something out of everybody's story."

The potential of peer empowerment is not just anecdotal. Machtinger has studied the Medea Project's life-saving impact on his patients.

Machtinger says the patients in the Medea Project followed by his research team went through an extraordinary transformation. Many who had barely disclosed their HIV status to anyone when they began, became activists and leaders in their communities, helping to destigmatize HIV while pursuing personal goals and leading productive lives.

"For them to develop what they described as "sisterhood" was the most important and most profound type of healing that I ever witnessed," Machtinger says.

He began seeking alternative methods to help his patients after increasingly noticing that a large proportion were successfully receiving antiretroviral treatment, but still dying from reasons that had "nothing to do with HIV," such as murder, suicide or drug overdose.

"They could have their HIV under control, (but) their lives were not getting better," Machtinger says. "That was because their core issue -- a life of trauma and the impacts of depression, isolation and shame -- wasn’t being effectively addressed. And to us, that's not acceptable."

Machtinger's experience is reverberating beyond the Medea Project. He says witnessing and studying the impact of peer empowerment has helped inform a broader role. He is part of an advisory group helping to develop new guidelines for trauma-informed primary care for the federal Substance Abuse and Mental Health Services Administration.

The new guidelines will likely include a substantial focus on interventions with peer empowerment as one ingredient to help people with severe trauma heal, says Machtinger.

"The core elements of the Medea Project are really lessons for other interventions to help people overcome trauma and other stigmatizing situations and conditions," says Machtinger, adding that childhood and adult trauma have been linked to a variety of illnesses, such as hepatitis C, heart disease and diabetes.

He expects the new guidelines for primary care clinics and other health providers to be finalized and published later this year.

Trauma at the Root of HIV Diagnosis

Steptoe now realizes she was infected with HIV through unprotected sex and sharing needles. She used to be addicted to heroin and cocaine. During a decades-long period of her life, she was in and out of the criminal justice system. She worked as a prostitute and survived abusive relationships -- getting beat up so badly one time that she spent three months recovering at a hospital, she said.

Steptoe says experiencing sexual abuse repeatedly as a child and teen led her on the path that eventually resulted in HIV infection.

"Sexual abuse came from family," she says. "And I guess I was kind of covering all that up by choosing the drugs. It kind of took me out there into the street, looking for love in the wrong places because I didn't have it at home. I started shooting drugs and that led into prostitution and to prison."

Recent studies show that HIV-positive women suffer disproportionately from high rates of trauma and post-traumatic stress disorder. The high rates of trauma also lead to increased risk of further spreading HIV, according to researchers.

Transforming Her Life

Now Steptoe is busy and full of energy. She takes antiretroviral medication religiously every morning, eats a healthy diet and works out by taking Zumba fitness classes at her gym.

Steptoe, a mother of three and grandmother of nine has also taken full custody of her 8-year-old granddaughter, who frequently accompanies her to rehearsals.

"She teaches me how to love, and she gives me patience," says Steptoe, who also cares for other kids in her Mission apartment building.

Rhodessa Jones, the Medea Project's dynamic and energetic director, says Steptoe has flourished since she joined the organization, becoming a leader and inspiration to other women.

"She’s so powerful, positive and forceful. She gets it," says Jones, who founded Medea more than 23 years ago. "Theater has really been expressive therapy for her. It gives her a space to speak her truth."

The Medea Project uses Greek, Roman and African mythology to introduce "the universality of all of our stories," says Jones, who asked Steptoe to imagine going back in time to age 14 and write the lessons she would give herself. The result was Steptoe's piece "Younger Self."

Steptoe wrote the piece, performed in January in San Francisco, about the moment in 1987 when she first found out she was HIV-positive. She was serving time in jail and received a health checkup.

"My world crashed. I didn't have no education of what I had, I didn't have no support," says Steptoe, adding that she considered her condition "a death sentence" at the time. "I had to relive that again by writing this because I needed to heal."

'HIV is a Health Condition, Not a Crime'

After receiving the diagnosis, she remembers crying at night with a pillow over her head so others wouldn't hear.

Steptoe then kept her HIV status a secret for many years.

But, years later, the key for her to find and use her voice was becoming a part of The Medea Project, she says. The main motivation for telling her story? She wants to give hope to others, and help them feel they are not alone.

"Now I can tell the world that HIV is just a health condition, not a crime," says Steptoe, who doesn't hesitate to share her story as a lead actress for Medea in front of audiences of hundreds of people.

"I don't have shame around it no more,” Steptoe says. “I let my grandkids know that even if you go the wrong way, you can still turn your life around."