A Woman's Journey With HIV, In and Out of the Prison System
January 3, 2011
When did you start disclosing? Because for so long, you lived in silence.
I started with my kids; I told my son when he was 11 years old. I didn't want to die and have people come, and, "You're mother had that thing, you know." So we had a close relationship, and I was able to tell him.
Now, my daughter, who was, like, 16 at the time: I didn't tell her till she was grown, because she's a drama queen. And my youngest son: I don't think we ever had the conversation. It's just that I was, and, you know . . .
Right and in 2003, when I moved from Connecticut to South Carolina, I started getting involved in things. I became the consumer advocate for the state, and I did presentations. I started speaking out. But I was aware that my daughter was in high school, so I tried to be mindful of what she would think.
I did a presentation one time, and somebody put it in the newspaper. I had no idea that it was going to be in the newspaper. I was just talking about my brother's death, and how that affected me, and how many years I had been living with it. The reporter never asked for my permission, and nobody told me that it was going to be in the paper. So I had a whole lot of mixed feelings about that. But then, as I look at it now, that was my stepping stone to where I am now. So I stay in the newspaper now.
How do you disclose to people around you? Do you date?
I'm married. I got married in 2000. My husband and I dated for like seven years, with me in and out of prison. When I came out in 1994, I hadn't even disclosed to him. So, in 1994, when I went to the support group, I had got my own place in New Haven. And he was there, and I was talking about us moving in, and stuff, together. But before I could do that, I had to disclose to him.
The support group helped me. And I disclosed. It was a very dreadful night. He said, "Well, I'm going to get my stuff. I'll be back." I moved into the place. I had no phone, no contact. The next morning, when I got ready to go to work, he hadn't come back. And I was, like, "He's gone." But he couldn't get to me or tell me that he would be coming later that afternoon.
Oh, so you just thought he just left.
But later on that afternoon, when he came back, I was like, "Aahhhh." I started to breathe. And with him knowing and me knowing, we talked about it a lot. And I continued to do my support groups. I asked him to come, but he never did go with me. He was also a person in recovery -- we met on the street. He's been in recovery longer than me because I flip-flopped for a while. And he's always been encouraging.
Something I thought would never happen did: I got married. And, wow, it's 10 years. Yeah. He lives in Connecticut. And we've had our ins and outs, our separations. But emotionally we are one. So he's just waiting to retire to come to South Carolina and be with me.
Let's talk about the kind of work that you do. Do you work in HIV?
Yes. I founded A Family Affair. It's an HIV/AIDS ministry at my church, Victory Tabernacle. We started out as a support group -- a support group that was different, in that it was for persons affected and persons infected. So we had a lot of people who had family members who had died and had no place to go, or no one to talk to them because so many of the agencies are for persons living with.
It's been good. We're into our fifth year, and we've grown. We do community outreach, we have a speakers' bureau, pass out condoms and speak wherever they want us to speak. Recently, we've gotten involved with the National Association of People With AIDS (NAPWA), and Common Threads, a women's group of South Carolina. We help with testing on awareness days. We just do a gamut of things.
And so you started this on your own?
Because I knew that idle time is the devil's playground, and I didn't want to go backwards. They already had the Minority AIDS Council in the church. And once I hooked up with Miss James, I started talking about things that I needed for myself. I knew other people, positive people, in South Carolina could use it.
In the beginning, a whole lot of people that came to the support group were people that were not originally from South Carolina. You know, they came back to South Carolina from New York, Virginia and other different places. Even now, it's still hard to get people in South Carolina, who are born and raised in South Carolina, to come out to different things, because of the stigma. But we're working on it.
So you're involved in the church, and you're living with HIV; and at some point, you had AIDS. How did people respond to you? You know, the Church isn't always necessarily the most welcoming to these kinds of issues.
My pastor has always been welcoming of HIV. He allowed the Minority AIDS Council to have a spot in the church, without paying. And now we have the USC/Claflin EXPORT project in there that focuses on HPV and HIV. He was the open one.
But I can tell you: The congregation and the family of the church people are still not open. And if you ask them about the HIV/AIDS ministry, they know they have one, but not too many of them volunteer or come by. But it's getting better. You know, we're starting to get younger people involved and wanting to do things with the HIV/AIDS ministry. We've had students come from the college. Because we have two historical black colleges in Orangeburg: Claflin University and South Carolina State. So I have student interns come and volunteer, and do things with the ministry.
The faith community has a blind eye when it comes to HIV and AIDS. But I try to get to as many churches as I can, being a part of Project Faith on the South Carolina HIV/AIDS Crisis Task Force.
How does this work make you feel? Because you've come a long way.
Yes, I have.
And so how does this make you feel about yourself?
I feel great. One of the things that I realize is that when I serve, when I help, when I do something for others, I'm doing it for myself. It's so rewarding that it's all I want to do.
I run the HIV/AIDS ministry in my church; but there's no salary. I'm just volunteering, doing this, because it's part of my life, what keeps me going.
I think it's amazing. You work with young people, older people. What's that like?
Well, recently I've started working with the seniors, and doing condom demonstrations.
And when you mean older, what do you mean?
Oh, I'm talking about 65 years old all the way up to 90. I do these demonstrations in the town of Bowman, S.C.. They have the senior center where the seniors come in for lunch. And so I've had an opportunity to educate them on HIV during those times. And that's the town that my parents are originally from. So I disclose to them, and I talk about HIV and how members in their family may be positive, but because of the way you treat them or the way you talk about the disease, they would never tell you. The condom demonstration for the lunch group was fantastic.
Did they get it?
After the condom demonstration, I had one man demonstrate to the people that came in late. And he was fantastic. I was, like, these seniors got this better than the kids. They got it. They got it. And I told them that the importance of me teaching you, is that some of you may say you don't need this, and so on and so forth. But our youth will come to you before they'll go to their parents. And if you know how to do it correctly, you can show them, and they will listen to you. You know, because they see you as the elder. So it's been real rewarding. The town is still talking about it.
And so this was just to educate them to teach younger people, but also educate them for themselves. And what kinds of questions did they ask?
They wanted the condoms and female condoms. They asked some personal questions and I realized that in South Carolina, when people ask you how you got HIV, they really want to know who gave it to you, so they can say such-and-such-and-such. You know. But they do ask, "Well, how'd you get it?" And I usually like to answer that by, "It's not important how I got it if you know the modes of transmission," and then I go through that. And then I say, "What's important is what I'm doing with it now, how I'm living my life." I make sure to tell them about how destructive my life was when I first found out. I had to get a positive attitude to live a positive life. They also ask questions about where they can get these condoms, and where they can get tested. And I like to give them all that information.