Sisters of Change
African-American women are more impacted by HIV than women of any other race or ethnicity in the U.S. Yet when it comes to addressing their plight, it’s mostly men who call the shots and set the agenda. Meet five positive women from across the country who are committed to being a part of the solution, fighting for gender equity.
by Chip Alfred
They call themselves “Sisters of Change.” As members of Positive Women’s Network-USA, they motivate women living with HIV to get involved in all levels of policy and decision-making. They’re raising their voices for women’s rights in the HIV-positive community, refusing to be counted out. In a no-holds-barred discussion, a group of female activists share their stories of surviving the past, embracing the present, and empowering themselves to change the course of the future.
Mary Bowman, twenty-five, from Prince George’s County, Maryland, is a poet, singer, and peer navigator for people living with HIV/AIDS.
Sharon DeCuir, forty-six, from Baton Rouge, Louisiana, is an HIV prevention program manager.
Loren Jones, sixty-one, from Berkeley, California, is a member of the board of directors, Positive Women’s Network-USA.
Pat Kelly, fifty-nine, from Orangeburg, South Carolina, is the president of “A Family Affair” HIV/AIDS Ministry, Victory Tabernacle Deliverance Temple.
Waheedah Shabazz-El, sixty, from Philadelphia, Pennsylvania, is the regional organizing coordinator, Positive Women’s Network-USA.
A&U: Let’s start by talking about your earlier lives, coming of age as an African-American woman in a man’s world.
Waheedah: I was raped when I was nine by one of my mom’s boyfriends. I didn’t feel comfortable sleeping in my own home. I was afraid of mom’s boyfriends crawling into bed with me. Mom could barely put food on the table or pay for heat. I wasn’t told that I was going to college; there was no message to me that I was going to go somewhere. I had my first child at fourteen, and another one at sixteen. I converted to Islam at eighteen. Islam gave me structure—a sense of family and values. It calmed me down. I wasn’t that psychedelic party girl after that.
Mary: I was born with HIV. My mother was a drug addict and not really fit to take care of me. I was raised by my dad and step-mom. In fifth grade I told my class I was HIV-positive during an HIV discussion, and that started a long trek of internalized stigma. My stepmom told me not to tell anybody. She said I would be kicked out of school; it wouldn’t be a good situation for me. Some kids were extremely insensitive, very standoffish. They didn’t want to eat with me at lunch anymore. I had a bully who would harass me every day in front of the whole class. I didn’t understand why I had to feel like I was guilty. I didn’t do anything wrong.
Pat: I’ve been raped so many times. We get into relationships not knowing anything about abuse until we become abused. Then there’s the shame and guilt and not knowing what to do or who to share it with. I only reported it once. That ended up being so traumatic; it was like I was the victim all over again.
All of you have been living with HIV for more than a decade. Can you describe your situation when you received your diagnosis?
Sharon: Before I was infected, I was in a marriage. He knew he was infected and never told me. He drank a lot and was abusive—physically and emotionally. After the abuse got more regular, I packed up me and my kids and left. When he got sick, I came back to help him and I got tested. My world just kind of stopped. I had the feeling that I was dirty, that no matter how many baths I took I just could never get clean enough. I thought, “Who’s going to want me with this? I’m tainted.”
Loren: I grew up in North Philadelphia and went to Penn State. But in 1986 when I was diagnosed, there was no information out there for women. I was homeless and had no job at the time. I said to myself, “Now I’ve really screwed up. I’m not going to deal with this right now.” I needed to deal with other basic priorities [earning money, putting food on the table, finding a place to live].
Pat: It was 1985. I was serving time in prison for writing bad checks. They gave me an HIV test in jail without my knowledge. When I found out I was positive, I went a little crazy. I got more actively involved in drugs. I just threw everything out the window because I thought I was going to die tomorrow. l had intentions of going to law school. It didn’t make sense then to apply to law school. I didn’t think I would live long enough to do it. In my mind I started to have a hopeless life.
Clearly, you’ve all experienced hardships, but you managed to turn your lives around. How did you do it?
Mary: I wrote a poem called “Dandelion” about my father being a drug dealer and my mom’s issues. Performing it was a really freeing experience for me because I wasn’t able to talk about it before that. After my performance, a young lady in the audience with tears in her eyes tapped me on my shoulder and said, “Thank you.” It was a life-changing experience for me and I realized that I was on to something.
Waheedah: I was married to a former IV drug user. I was educated and had a good job, but I didn’t know I had any risk of becoming HIV-positive through somebody else’s behavior or how to protect myself. We didn’t talk much about condoms; we talked about birth control. I was probably infected for a number of years before I got tested. At the time I was diagnosed with AIDS. I started in treatment and went to ACT UP meetings. I found people who wouldn’t judge me, people who were fighting for justice for everybody. HIV has taught me about the real spirit of the human being. It’s something that goes beyond color and ethnicity and what you have and where you come from.
Sharon: I thought I was the only woman with this disease. I found a women’s support group and started to learn what HIV was. This became my safe place. I had to find out everything I could about this disease. The more I learned, the more I needed to know. I realized that I was the one who was willing to put a face to HIV/AIDS publicly in my town. Now that I’m working in prevention, it’s like full circle for me. I came to this agency ten years ago, when I was homeless and needed help. Now it feels great because I can help people who don’t have a voice and are afraid to speak up. I can empower them.
As women involved in HIV activism and advocacy work, what do you see as the major challenges HIV-positive African-American women face?
Pat: We have babies and childcare issues. Women naturally are caregivers and nurturers and men are not. We try to take care of everybody and end up putting ourselves last, so a lot of women are not getting the care they need. Disclosure is another big issue for African-American women. So many women have self-esteem issues before the diagnosis. Learning that you’re HIV-positive just makes it worse. It makes us feel ashamed. We feel as though we are not lovable. Nobody wants to be rejected, so rather than fear that rejection, some women just vow to themselves, “I’m not going to tell.”
Waheedah: The new wave of criminal laws for HIV nondisclosure is a major challenge. HIV criminalization cases usually come from a former partner after a breakup. If there’s a custody battle, an HIV-positive woman will lose her child because she’s seen as an unfit mother. Incarcerated HIV-positive women are often denied their sexual and reproductive rights. It’s preventing women from wanting to get tested. Women are asking themselves, “Why should I get tested if automatically I’m a liar, I’m a criminal, I’m no longer allowed to have a life or romance?”
Mary: I’m a lesbian. In lesbian circles, they don’t really talk about HIV much or at all. Lesbian women have been shunned by the lesbian community because they’re positive; it means you slept with a man before or you used drugs.
So how can we resolve the gender inequity issue?
Sharon: We need to not be afraid to talk about HIV in our schools, our communities, our churches, and most importantly our kitchen tables.
Loren: I don’t consider it improvement until…poor African-American women are not having to have survival sex or medicating themselves on drugs or alcohol because their lives are so stressful or miserable. We need to make their lives worth living. We have to address the poverty and the education issues—starting with our children. We need to give them a sense of worth and self-esteem and the knowledge that women are valuable for things other than our perceived sexuality and our looks.
Waheedah: I’d like to see HIV treated as a medical condition not a moral condition, so we can talk about health disparities among women, about putting women at the center of HIV prevention, planning, care and services.
Pat: We need a champion—a woman champion. We need to groom women to become champions. We have to stand up and be counted. If we don’t, it will continue to be a male-dominated world.
With each sexual encounter, African-American women face a higher risk of infection because of the high prevalence of HIV and other STDs
in their communities. Endemic stigma, not knowing their status, and limited access to healthcare are other factors that increase HIV risk among black women. Nevertheless, there is some encouraging news. HIV incidence among African-American women decreased twenty-one percent from 2008 to 2010, based on CDC data. “Additional years of data are needed,” explains Dr. Donna McCree, Associate Director for Health Equity in CDC’s Division of HIV/AIDS Prevention. “However, we are cautiously optimistic that this could be the beginning of a longer-term trend.”
For women like Waheeda, this may signal a light at the end of the tunnel. “Women haven’t had a place at the table. Activism gives me hope, and I’m never going to stop trying to change the world. This is a fight we all have to fight.”
For more information about Positive Women’s Network, visit www.pwn-usa.org.
For more information about Freedom G Photography, visit: www.freedomgphotography.com.
For the CDC fact sheet on HIV and AIDS among African Americans, log onto http://1.usa.gov/1eZkFZf.
Chip Alfred is an A&U Editor at Large based in Philadelphia.