Ms. THEMBI NGUBANE (HIV-Positive Woman who Recorded an Audio Diary): Every morning when I wake up, I'll run over to my drawer, take out the mirror, and look at myself. I say, Hello HIV. You trespasser. You're in my body, you have to obey the rules. You have to respect me and if you don't hurt me I won't hurt you. You mind your business, I'll mind mine, and I will give you a ticket when your time comes.
GORDON: That was the voice of Thembi Ngubane, who found she was HIV positive when she was a teen. She's been audio taping a diary of her life with AIDS.
Joe Richman of Radio Diaries traveled to South Africa, met with Ngubane, and gave her recording equipment to chronicle her life story. Both recently spoke with NPR's Farai Chideya.
FARAI CHIDEYA reporting:
Thembi, when did you become infected and how did you find out that you were infected?
Ms. NGUBANE: I got tested four years ago. I didn't have any illness that would lead me to go for an HIV test, but my ex-boyfriend, he was seriously sick and end up dying, because of the sickness. That's when I realized that I have to have an HIV test because no one would tell me what happened to him.
CHIDEYA: Joe, how did you come to conceive of the idea for this project?
Mr. JOE RICHMAN (Director, Radio Diaries): I run a nonprofit production company called Radio Diaries. So a lot of the work that we do is working with people to tell their own stories this way. And sometimes it works best with an issue that kind of needs this approach and AIDS is sort of that issue. You know, it's maybe not a faceless issue, but it's sometimes a voiceless issue. So, you know, we thought that it was a way to kind of get beyond, kind of the mind numbing facts and figures about AIDS, to just to get to know one person.
CHIDEYA: And the figures are just horrible: five million people in South Africa who are infected with HIV. And young women and girls 16 to 24, is it, that are the fastest infection?
Mr. RICHMAN: Yeah, far and away the group that's being most dramatically hit by the disease right now. But, you know, I've been living in South Africa with my wife for a year and a half. Living there, you know, you get a little bit immune to the numbers. I mean, it's a little bit hard.
And, you know, for me I wasn't even sure if I wanted to do a project, you know, that would take year on this subject, you know. And it was really when I met Thembi and I realized, I wasn't doing a documentary on AIDS, I was doing a documentary on Thembi. And she was sort of my access point to this issue, in a way. And, hopefully, you know, that's what she provides for the listeners as well.
CHIDEYA: Thembi, let's just listen to a little bit of where you talk about some of the stigma associated with AIDS.
(Soundbite of Thembi's Audio Diary)
Ms. NGUBANE: There are a lot of us here in Khayelitsha who are sick, but the people don't disclose because they are scared of discrimination. People do talk, do point. People do whisper. And sometimes, if they hear that someone is HIV, they burn your house down, so that you can't stay there anymore.
CHIDEYA: You talk about the stigma, and yet you were carrying a tape recorder around and tape recording your life. You were making yourself very open. How did it feel to be so exposed?
Ms. NGUBANE: Well, it was kind of difficult to carry the tape recorder because some people would tell me that it is not right to talk about my HIV status, it is something that is confidential. But I felt like I needed to talk about it. I didn't need to hide, because hiding won't help me.
CHIDEYA: You have a really beautiful relationship with your boyfriend, who actually is here, in L.A., with you on this trip. And I just want to play a little bit of your dialogue with him about HIV.
(Soundbite of Thembi's Audio Diary)
Ms. NGUBANE: Melikhaya.
MELIKHAYA (Thembi's Boyfriend): (Speaking foreign language)
Ms. NGUBANE: Do you ever wish that maybe we were - you would never have met me?
MELIKHAYA: No, no. Just because, the only thing is that I love you. You know that.
Ms. NGUBANE: Yes, but I'm the one who's infected you.
MELIKHAYA: I don't want to blame you because you didn't chase after AIDS. You didn't go in top of the mountain and then said, do you want to have AIDS, you know? And I don't want you to blame yourself.
CHIDEYA: How has HIV shaped your relationship?
Ms. NGUBANE: Well, at first, it was very difficult because we both didn't understand anything about HIV or AIDS. But through the help of the support group and also some teaching from the doctor's at the clinic, we just patched things up. Yeah, we made things work. Because, first of all, we love each other and we trust each other, so we didn't believe that something like a disease could come between us.
CHIDEYA: And let me just describe you: you are very petite, beautiful woman, very girlish figure, and yet you have a daughter now. And your daughter's HIV status?
Ms. NGUBANE: She's HIV negative. I thought that I didn't have the right to have a baby. But again, I thought that I need to have a baby because I'm also human. But this disease was standing in front of me. It was the only reason that was going keep me from having a baby. I'm in a community that has anti-retroviral drugs, so I did have an access to ARVs, which I get them for free. My doctor told me that there are some things that they can do as doctors to help to prevent the child from getting infected from the mother through birth.
Mr. RICHMAN: I'll just add that it's actually one of the brightest spots, in terms of AIDS treatment, what they've been able to do with mother-to-child transmission. You know, rates used to be around 40 percent transmission of the disease. And now, with using the proper drugs, if you don't breastfeed and even have a caesarian section, rates are down below two percent.
CHIDEYA: Joe, who was the audience for this? It aired on NPR's ALL THINGS CONSIDERED. You're going around on a tour. Who are you hoping that this will touch? And are you also airing this in South Africa?
Mr. RICHMAN: We wanted to do something a little more with this. And so that's when we started to think about doing the tour. And it's funny because, you know, on the radio you're reaching millions of people. At a lot of these events, were reaching maybe two or three hundred, but it feels so much more powerful.
In terms of South Africa, when Thembi goes back, she's going to be part of a great group that does education programs in the schools. And we're going to take her story and translate it into Zulu and - can you help me out Thembi?
Ms. NGUBANE: Xhosa.
Mr. RICHMAN: Xhosa - just to get it on community radio stations throughout South Africa and kind of get it to people who really need to hear it there.
CHIDEYA: And, finally, Thembi, if you could go back in time and choose whether you became the person that you are now, including being HIV positive, or if you could change that moment and not be infected, but also not have seen the world as you've seen it, what would you choose?
Ms. NGUBANE: I would choose the person I am now.
CHIDEYA: Thank you, Thembi, and thank you, Joe.
Mr. RICHMAN: Thank you.
GORDON: That was NPR's Farai Chideya with Joe Richman and Thembi Ngubane. They collaborated on an audio diary of Thembi's life with AIDS. You can hear the audio diary at NPR.org.
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