I recently sat down and spoke with Margaret Shepard, an HIV-positive woman who is an expert on living and surviving HIV. The disproportionate impact of HIV/AIDS on African Americans and all people of color warrants enhanced interventions that address the perceptions of disease prevention in all African Americans, and the unique realities and context of the lives of black women. In light of the recent reports about African-American women and the increased risk of HIV in black communities, Margaret and I chatted about her experiences living with HIV for over a decade.
Herstory Is Not History
"I'm probably known best as a person who was not at high risk for HIV. I was a professional woman, I taught school, I was a nurse, I was a mother and a grandmother. I was a grandmother when I found out that I had contracted this disease through a blood transfusion in 1983. It goes to show you that anybody can get it. It doesn't have to be a prostitute, it doesn't have to be a shooting drug addict."
I Am Woman, Hear Me Roar
"People want to know why women are just now coming forward about HIV and why women are just starting to speak out. They don't realize that we weren't given any attention at first. Women, it was hard for them to find housing or anything. The basics. In 1987, I had a hip operation and where I was living was not handicapped accessible, so I tried to find AIDS housing so that I could be in a place that was handicapped accessible, but there was no place for women. Oh, there was plenty of housing for men that was not admitting women. And to make it worse, the men did not want women living in the AIDS houses. So women were slow to come forward and talk about HIV in their lives. Another thing was the clinical trials were not held on women..."
On How HIV Is Devastating Communities
"We are so late getting the word about HIV. I know plenty of people who are not infected that do not even know that HIV is affecting our communities. We've lost so many women. Women got scared. Women, black women as a whole, are traditionally the bread winners in their family, they are the backbone of their families, they don't want to be seen to be the weak ones, they can't be scared. Therefore I think all those reasons are reasons that the African-American women have not come forward and talked about HIV impacting our communities."
On Drug Addiction and Choices
"I did do drugs, but it was only after I got this disease, after my children were adults, and then I got depressed. I chose to be lost to drugs cause it helped me hide the pain of HIV." "Oh, there is definitely still a connection between drugs and our communities. I don't know how widespread it is, because I'm not on the drug scene that way. It is interesting, when you smoke pot, you see pot smokers and when you smoke crack, you see crack users and when you're reading the Bible you see Bible readers. So when I knew people who were involved in heroin and shooting and stuff like that, they didn't care about HIV, they were worried about getting high. These people who lived at my building, they did not care if they didn't have any bleach. They'd rinse it out in the water. I don't think that was just an isolated incident, either. I think that was by and large just a run of the mill thing. People are excited about drugs. Drugs make people feel good. I think people in the community tend to forget that drugs help carry this epidemic along."
On "Men on the Down-Low"
"I would tend to disagree with the media that all black women get HIV from men who are bisexual or in jail. I think that more or less women, if they're contracting it from their partners from a heterosexual relationship, usually the men are drug users. If that's the way they're getting it. But there are women who are drug users also. And a high number of them are getting it through the rise of heroin back on the scene, and using each others' crack pipes and things like this. Basically, that goes back to not caring when they get high. It all boils down to what you're doing and who you're doing it with. But I guess people don't think when it comes to sex, either. Women and men can be fools. You know, like, this guy that's in my [support] group, his wife didn't know for 15 years that every Friday when he got off work, he spent the weekend frequenting bath houses, and the bath house was a gay club. And we wonder why people contract HIV. We are not honest about what we are doing and who we are doing it with."
"Oh, you should have heard me in the beginning about those [HIV] drugs... I'm not going to try out any new drugs, because I'm not going to be a guinea pig. It was like 10 years after I was officially diagnosed that I started taking the medication. So, finally, in 1997 was when I started taking the drugs. And I have not had any opportunistic infections. The only thing I've had was I had a lot of pneumonias because my lungs have always been weak. Not PCP, though. But I've had a lot of arthritis problems that they don't attribute to my HIV status. I've had other illnesses that are just tearing my body down. But that's about where I am with HIV and those meds. Just taking them like everyone else."
On Doctors and Feeling Comfortable
"I think if they don't hurry up and try to get someone who understands me as a woman, as a person of color -- we are going to lose more people to HIV. People will continue to slip through the cracks. Not that African-American doctors will make people come out of the closet, but we may be more comfortable with them. My doctor is Indian. I guess that's the closest thing to a black doctor I could get. It's been difficult to relate to men. You know, I am a woman and men are difficult to explain and relate to them because this disease is so strange and hysterical. I think that if there are African-American physicians, we will go to them. It's like the man who is building the ball park. If you build one, they will come. And so if they build one, somebody will come. A lot of black people are dissatisfied and they drop out of care -- if they are not dissatisfied with their care provider, they're misunderstood, I'm sure."
Final Words of Wisdom
"I want to straighten something out. People are always talking about faith-based HIV programs and the response of black churches. Let me tell you, some of those churches are just interested in their own issues. They would rather boycott Starbucks to no avail about political issues and let you know they're heavily against guns, instead of gathering around and doing healthcare educational services and seminars. I would like to help out church groups, especially for the youth groups to tell them prevention and education for AIDS. We all, churches or no churches, need to remember that it doesn't take much to pull one person in if they try prevention and education."