The words "resilience" and "survivor" come to mind when looking at the life of Waheedah Shabazz-El. Having been simultaneously diagnosed with HIV and AIDS in 2003 when she was imprisoned, this mother of three has been confronted by many obstacles, including drug addiction, domestic violence and stigma. But with the help of her Islamic faith, her family and other HIV activists, she has overcome and left a powerful imprint over the past 13 years.
The North Philadelphia-born activist is currently the regional organizing director for the Positive Women's Network (PWN) as well as one of the coordinators of the local PWN chapter. She serves as goodwill ambassador for Philadelphia FIGHT, a longstanding HIV care and service organization. In addition, she is a fierce activist who has spent years fighting the good fight all around the world with the likes of ACT UP, Community HIV/AIDS Mobilization Project (CHAMP) and other organizations and activists.
To Shabazz-El, 62, this "fulfilling" work has greatly inspired her to continue to make change, which includes working more within the Islamic faith to reduce stigma and educate.
TheBody.com sat down with Shabazz-El to talk how about her life has changed since her diagnosis, the stigma and barriers that she has faced, and how her HIV-status and her faith have helped shaped her HIV/AIDS and human rights advocacy.
When you were diagnosed, did you think you were at risk?
Honestly, no. I had been married; I thought I was doing what I was "supposed" to be doing. But over the years, we started doing drugs and would get sober and then relapse. I was smoking weed; he was doing stronger drugs. We wouldn't do it together, but we were disconnected in our relationship. We had secrets we were holding from each other.
When I was diagnosed, we had been long separated and were divorced. It wasn't until I saw my ex-husband years later that I realized that he was dying from AIDS, like his brother before him. I asked him if they were sharing needles, and it was clear that I had been at risk in my marriage.
But for women, we don't realize all of our risk. Many of us have risk factors through the people around us, not anything we are doing personally.
Now, I will say that when I left my marriage, it was because it was violent and not safe for my children, and me -- I began experimenting with crack/cocaine. In that year of addiction, I became a slave to the drug; my house was busted by the police; and I got arrested and placed in jail, where I ended up being diagnosed.
What was the testing process like while being incarcerated?
They had people come up several times to the prison providing HIV/AIDS education, STD [sexually transmitted disease] education and testing. I wasn't interested because I really believed that my problem was jail, not HIV. The fourth time they visited, I decided to take the test. Taking the test let me walk through the walls and be free, and if I took it they would stop bugging me about it.
So when I got my results a few weeks later, I was floored. The woman who tested me could barely look me in the eye. And I just remember being paralyzed. In my mind, it was like being visited by the Grim Reaper, because not only was I really sick, but I just kept thinking this was a death sentence.
And the woman kept asking me, was there someone I wanted to call. And I said no. I had already screwed up my life, now I was supposed to call home collect and say what? Tell my family I was dying? No. I asked, could I stay there a bit longer and cry some more to get it out of my system? Because all of the women knew that if you left crying you had tested positive, and it was a long walk back to my cell.
What was the support system like in prison compared to being out?
In terms of how to deal with living with HIV/AIDS there wasn't that much education around that. Pamphlets on how to prevent HIV weren't really going to help me; I was already positive. But I still read one, sticking it in my Koran because I didn't want anyone to see.
See, there were no support groups and there was still a lot of stigma inside. Even though people may have known we were positive, and why we were going to the doctor, and why our meds had to be refrigerated, we didn't really talk about it.
When I left, to stay linked into care you had to seek support because you needed so much: housing, food stamps, medicine and health care. It was really hard for me to have to ask for so much help. But in time I began to cultivate a community of supportive people who helped me, like my doctor and activists like John Bell, JD Davids, Laura McTighe and many others at Philadelphia FIGHT and my Project TEACH family.
How did you begin to disclose to your family and others?
Well, with the help of John Bell, I began to disclose to my family first. I started with my son, who then told my daughter, who was mad at me for waiting so long to tell her. Once I became more educated about the disease, I began to slowly disclose, did an interview for POZ Magazine, started telling other family members, and then one day at an event, standing next to my advocate friends, I disclosed to folks at a public event.
You are such an accomplished advocate, how did that begin?
I started with Project TEACH. I had just gotten released and was in linkage to care and signed up without my knowledge to these classes taught by McTighe. And she saw my fear and helped me, taught me and was there for me. And when I realized that I wasn't going to die, I started doing more. I went to ACT UP meetings with John Bell and met all of these wonderful people. From there I was part of CHAMP and was mentored by JD Davids, who worked the hell out of me.
It was there that I began to understand what the social justice, HIV prevention justice and the human rights movement really meant. CHAMP helped me see that HIV wasn't just about the virus, but also about how structural barriers/systematic barriers like poverty, oppression, lack of human rights, and lack of access to health care and housing intersected with HIV.
HIV was a symptom of whole lot of other stuff going wrong. And my work really comes from that standpoint.
In 2008, I met Naina Davi from PWN, but back then it was part of WORLD and it was amazing. I went to a meeting with a lot of women from that group from all different walks of life and backgrounds, cisgender and trans, black, white, Native, you name it. And we talked about our values, the work we wanted to do and how we wanted to be the premier voice for women living with HIV. Now, we are our own organization with chapters across the U.S., including Philadelphia, and I am the regional organizing director.
Do you believe that your faith conflicts at all with your work?
My religion doesn't conflict with my work.
Islam is a religion of compassion and a religion of justice and equality. This is spiritual work, and I feel as if I am spiritually guided. God gave me a sign, doors just opened for me -- as opposed to me having to kick doors open. My story is one where God has purposely placed people in my life.
Now, can we be doing better? Yes. We have to be more progressive in better understanding marginalized communities, such as people living with HIV, women, LGBT people, formerly incarcerated people, etc. Our struggles matter and the stigma is real. Women in our community are not always considered to be first class people. I have seen all kinds of people turned away, isolated and ignored. There were even people who didn't want people living with HIV to pray with them, as if we would contaminate them.
But navigating my faith and my work can be complicated. I don't always bring my activism to the mosque. It's an inner battle for me to decide when to speak up and when not to. But I am clear that I am here to make change among my community and am dedicated to working with other like-minded Muslims who want to make that same change.
Everyone has the right to live with human dignity: We are not animals; we are not vectors; we are humans. And it is still important that our religious leaders be more responsive to these modern day illnesses. All of the people of the scriptures prayed for the sick and the poor -- HIV is no different.
In September of last year, you went to a conference in South Africa that addressed your faith and the intersections of HIV and LGBT Muslims. Tell us about that.
I was invited to attend this conference, and it really did change my life. It was hosted by Inner Circle, an LGBT-based organization. Their mission is to raise consciousness through spiritually and movement building to bring healing to those who are marginalized or LGBT but still identify as Muslim. They created a space where we all could bring our whole selves and not have to compartmentalize our faith and other parts of our identity to be part of that community
It was nonjudgmental and responsive to our needs. I had never seen that. There were plenary workshops, seminars and recreational activities that brought us together. Men and women prayed together, swam together, hiked together -- women were even offering to lead the prayer. We had honest conversations about power and privilege among men in our community, and conversations about sexuality and empowerment. But HIV was hard to talk about -- no one wanted to talk about it really, even though there were people living with HIV/AIDS at the conference. Some people would leave me little notes about their status, and that was OK too.
I left there feeling spiritually free, a spiritual and religious freedom that I never experienced before.
Doing this work isn't easy -- and definitely doesn't make you wealthy. It must be fulfilling.
When you do something you love, I don't look at it as work. It's an honor be in the position I am at now. To inspire and be inspired by so many women is a really great feeling. And yes, the work is overwhelming at a non-profit, but it all comes from the heart.
Am I learning how to set more boundaries? Yes. No more working on the weekends, teaching myself to step away from my computer and practice more self-care. My husband comes in here and gives me that look, and I'm like OK, it's 7:30, I need to stop working.
But there is that part of me that is like, when I die, I don't want that to be about me having HIV. I want to leave a legacy that you can overcome some things. We are worthy, and we do it for ourselves. I want for women living with HIV to know that they can live long, healthy, dignified lives without discrimination and without stigma.
That makes you want to work even harder.
This transcript has been edited and condensed for clarity and space.