NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Last week on ALL THINGS CONSIDERED, NPR News broadcast the radio diary of Thembi Ngubane, a young South African mother who found out she was HIV positive at the age of 16.
Ms. THEMBI NGUBANE: Testing one, two and two. Test, test, test. Okay. Hi, this is Thembi. It's time for my prayer. Every morning when I wake up, I'll run off to my drawer, take out the mirror, and look at myself. I say, hello, HIV, you trespasser. You are 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. Then I'll give you a ticket when your time comes.
CONAN: In South Africa where Thembi lives, one in five adults, almost five million people, have HIV/AIDS, one of the highest infection rates in the world. Here in the U.S., HIV/AIDS has long come to be considered something that patients can live with. Access to anti-AIDS drugs and doctors, education about the disease, and its destigmatization have all contributed to that.
But in too many parts of the world, a diagnosis of HIV is tantamount to a sentence of death. In South Africa, it was that way for a long time, but Thembi is testament to change there. She's 21 now. Her HIV has progressed to AIDS, yet treatment with drugs allows her a life, plans, and dreams for a future.
Later in the program, your e-mails. Where did John Kennedy find that famous ask not what your country can do for you line? But first, living with AIDS. If you have questions for Thembi, or if you have a similar experience to share, we'd like to hear from you. Our number here in Washington, 800-989-8255. That's 800-989-TALK. The e-mail address is firstname.lastname@example.org. Joining us here in studio 3A is Thembi Ngubane. Nice to have you on TALK OF THE NATION today.
Ms. NGUBANE: Thank you very much.
CONAN: It's been five years since you were diagnosed with HIV, had the disease for years before that, as it turns out. How are you doing? How's your health now?
Ms. NGUBANE: Well, my health is finally, it's very stable, because I am on antiretroviral drugs.
CONAN: Mm hmm.
Ms. NGUBANE: So it's been very good.
CONAN: It's good now.
Ms. NGUBANE: Yeah.
CONAN: Okay, despite the traveling you've been doing. I know you've been doing a lot of speaking as well...
Ms. NGUBANE: Yeah.
CONAN: ...about these radio diaries.
Ms. NGUBANE: Yes, I've been doing a lot of speaking and traveling, all that stuff, but I love every moment of it.
(Soundbite of laughter)
CONAN: Let me ask you. When this gentleman over to my right, Joe Richman, approached you with the idea of doing this radio diary, what were your thoughts? Were you, was it scary? I mean, you knew eventually it might be broadcast in South Africa and let everybody know you've got AIDS.
Ms. NGUBANE: Well, I was not scared. I thought it was going to be fun, but I told Joe that it must not be broadcast in South Africa. But as I continued to do the diary, I grew to love the documentary very much. I grew to love what I was doing. I just didn't care about whether it is in South Africa, or whether it is in the U.S. I just wanted it for everyone to hear it.
CONAN: To leave something behind, something about your life, too.
Ms. NGUBANE: Yes. Yes.
CONAN: Mm. Tell us about the treatments you receive. Where do you go?
Ms. NGUBANE: Well, I go to the Doctors Without Borders and medicine sent from the frontiers in Khayelitsha, in my township. I go there for my medication, antiretroviral drugs, and any other medication that I need.
CONAN: And that's just outside of Cape Town?
Ms. NGUBANE: Yes, that's in Khayelitsha.
CONAN: In Khayelitsha.
Ms. NGUBANE: Yes.
CONAN: And just out of Cape Town in South Africa. The, you get the medicines for free? These are expensive.
Ms. NGUBANE: Yes, I get them for free, but not everyone in South Africa can get them. In some areas, there are people that need them but can't get them. I think Khayelitsha is one the luckiest townships that got them.
CONAN: We're talking with Thembi Ngubane. If you'd like to join our conversation, 800-989-8255, 800-989-TALK. Our e-mail address is email@example.com. And let's begin with Nicholette(ph), Nicholette calling us from Vancouver in Washington.
NICHOLETTE (Caller): Hi, there.
NICHOLETTE: I wanted to say that I was extremely moved by what I heard on ALL THINGS CONSIDERED the other night, and as a mother, I am--I feel for you, and I was curious to know what are your plans for your daughter after you and your boyfriend pass? You're saying that he was positive, too, and so I was just curious to know what you were planning to do.
CONAN: Hmm. Thembi?
Ms. NGUBANE: Well, I believe that everyone is going to die in some way, somehow, but everyone's going to die, so I don't think about that. Like, I don't put my death at first-although, I know that even if I die, my mother and my family and my boyfriend's family will take after, will take care of my daughter when I'm gone. But I also pray that God could give me a little bit, a little bit of time, so that I can see her grow a little bit bigger so that she can know me and I can get to know her better.
NICHOLETTE: I want to say that I admire you so much. I think your courage is just outstanding.
Ms. NGUBANE: Thank you.
NICHOLETTE: And I hope that you would live a very, very long time.
Ms. NGUBANE: Thank you very much.
CONAN: Thanks for the call, Nicholette.
NICHOLETTE: Thank you.
CONAN: Bye-bye. Let's introduce Joe Richman now. He's the producer of Thembi's AIDS diary, and producer for the project Radio Diaries. Nice to have you here in studio 3A, Joe.
Mr. JOE RICHMAN (Producer, Radio Diaries): Thanks, Neal. Nice to be here.
CONAN: How did you find Thembi?
Mr. RICHMAN: Well, I was, my wife and I were living in South Africa for a year and a half, working on a series for NPR called Mandela: An Audio History of Apartheid that aired on NPR. And towards the end of that process, I started to interview a bunch of teenagers in Khayelitsha--where Thembi's from--about AIDS, either who were themselves infected or who's family members were--with the idea that maybe, you know, that this sort of was a topic that could probably, could possibly benefit from this kind of treatment that, you know, trying to get someone to tell the story in their own words and maybe be a kind of a new approach to the kind of overwhelming topic of AIDS.
And I just interviewed a bunch of teenagers, and Thembi just kind of completely stood out, really. I mean her English was better. You know, there was kind of simple things like that. Her English was good. She had a kind of a presence. But also she just said things that completely struck me, like that tape that we heard earlier where she, you know, looks in mirror and talks to her HIV virus and kind of gives it commands. So there was just something about her that I kind of thought maybe, you know, there was potential to kind of tell this story in a way that would kind of impact people in a new way.
CONAN: One of the things we've heard a lot about, Joe, is the reluctance of a lot of people in South Africa even to be tested for HIV, much less come forward in this way. Were there a lot of candidates for this radio diary?
Mr. RICHMAN: You know, actually, surprisingly, there were. I think, you know, I found these teenagers through a support group, so they weren't necessarily out in the larger community. But, you know, Thembi had already been kind of, you know, urging people to get tested. She had done these little kind of poster flyers in her community that she'd already kind of encouraged people to get tested without actually coming out as herself HIV positive.
So, really, the year that she recorded I think was kind of a really coming out for her in terms of hiding less and feeling differently about the stigma in her own mind, and actually, to tell you the truth, probably in her township as well. I think things changed a lot over that year.
CONAN: Well, and, Thembi, at one point in the story that aired the other night on ALL THINGS CONSIDERED, you're wearing a I Have HIV T-shirt, so coming out is not a surprise to anybody anymore.
Ms. NGUBANE: Yes, it's not a surprise, because even if we are wearing that T-shirt, they don't know whether it's HIV positive or not HIV positive, because most of the people have those T-shirts.
CONAN: And yet this issue of coming out and telling people you have this dreaded disease, this is very difficult.
Ms. NGUBANE: Well, it's very difficult because of what people might do and what people might think, because people are very scared of the disease, and they don't believe that--some of them don't believe that it exists. And some of them, if you have the disease, they think it's contagious. They think you can't live around other people, you can't, you don't have the right to live with them in their community. You must go somewhere and be alone and die there alone. That's what they think.
CONAN: Hmm. In the course of the radio piece, we learn that you had told your mother that you had it, but we also learned that you had not told your father. He lives in different part of the country. And, in fact, you do tell him in the process of doing this radio diary. In fact, you tell him on tape. Let's listen to this excerpt from your radio diary.
(Soundbite of Thembi's Radio Diary)
Ms. NGUBANE: Okay, I have news that I have to tell you. I was trying to tell you, but I just couldn't.
Mr. NGUBANE (Thembi's Father): Mm hmm.
Ms. NGUBANE: Yeah, I just couldn't. But, I just--I don't want you to feel like I'm hiding something from you.
Mr. NGUBANE: Okay, (Speaking foreign language).
Ms. NGUBANE: Okay, three years ago, I was discovered HIV positive. I have AIDS.
Mr. NGUBANE: Oh, my!
Ms. NGUBANE: But everything is under control. I'm on ARV. My health is fine. I am going to the good doctors.
Mr. NGUBANE: Mm hmm.
Ms. NGUBANE: So I don't need you to worry about anything. Yeah, I don't need you to worry, just for you to know, because it has been kept a secret for a long time.
Mr. NGUBANE: Mm hmm.
Ms. NGUBANE: I felt like I have disappointed you. I thought that it was going to break you into pieces. (Speaking foreign language) How do you feel?
Mr. NGUBANE: I feel, I feel hurt, you see. But what can I do? I have to accept it. What can I do? Okay, (Speaking foreign language).
Ms. NGUBANE: Okay.
CONAN: That can't have been easy.
Ms. NGUBANE: It was not at all. It was very difficult, but I was tired of hiding, because you can't hide the sickness, because it will come out at the end of the day, and especially with the diary I was keeping. I wanted to do the diary, it was something I wanted to do. So if I was hiding from my own father, and wanting the world to know about my status, that was not right.
CONAN: So in a way, Joe was right, that the process of doing this helped you to come to...
Ms. NGUBANE: Yes, it has helped me a lot, it helped me a lot.
CONAN: Mm hmm. I wonder, have you seen your father since? Has he met his granddaughter?
Ms. NGUBANE: Yes, he has met his granddaughter a lot of times. And after I went to tell him, my mother said, okay--I didn't want to go to see him, but my mother said you must go and see him. Don't hide. Don't hide, because you have already told him. Then I went there. But he was, he was fine, but he was overprotective, like he just said all those things to me, that you must take your medication, right, you are not going to die. It is not a death sentence. No one can, no one can judge you. You did nothing wrong.
CONAN: So this fear that so many have that they're going to be disowned by their parents, thrown out, left on their own--in your case, that didn't happen.
Ms. NGUBANE: Yes, it didn't happen. I thought it was going to happen. I thought that my father would not want anything to do with me, because I have disappointed him a lot by bringing home a disease that can kill me. So I thought I was going to be a disgrace to the family. That's why I didn't want to tell him.
CONAN: We're talking with Thembi Ngubane. She was diagnosed with HIV when she was 16 and recorded an audio diary of her life and experiences in South Africa. When we come back, more of your calls: 800-989-8255. That's 800-989-TALK. The e-mail address is firstname.lastname@example.org. I'm Neal Conan. You're listening to TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan, in Washington. We're discussing one woman's experience living with AIDS in South Africa. Thembi Ngubane was 16 when she learned she was HIV-positive. At one time, that was a death sentence in South Africa, but Thembi is now 21, being treated for AIDS. She's recorded her experiences in an audio diary. You may have heard excerpts from that diary broadcast last week on ALL THINGS CONSIDERED. Today, she's sharing her story with us.
Also with us is Jill Richmond, producer of Thembi's AIDS diary and producer for the project Radio Diaries. If you'd like to join us, our number is 800-989-8255. That's 800-989-TALK. The e-mail address is email@example.com. And let's get Graham(ph) on the line, Graham calling from Portland, Oregon.
GRAHAM (Caller): Hi.
GRAHAM: I spent about six months is South Africa last year in KwaZulu-Natal, the province with the highest AIDS rate. And talking to people there and reading the newspapers, my impression was that Thembi's experience with access to ARVs really isn't representative of people's experiences in the townships. And I'm wondering, I'm wondering what you have to say about that.
CONAN: Thembi, is it unusual for you to be able to get the antiretroviral drugs in your township?
Mr. RICHMOND: He's just asking whether, whether it's common--whether it's common for you to get the drugs, it's usual for you to get the drugs in your township.
CONAN: Do most people who have HIV have access the drugs?
Ms. NGUBANE: Yes, in my township they have access to the drugs...
CONAN: Mm hmm.
Ms. NGUBANE: ...but in some other townships, they don't have access. And in some other parts of South Africa, they don't have access.
CONAN: Okay, let's bring another voice in. This is NPR's Brenda Wilson, a science desk correspondent who's reported extensively on AIDS and HIV in Africa. Nice to have you here, Brenda.
BRENDA WILSON reporting:
Thank you, Neal.
CONAN: Is Thembi's experience unusual?
WILSON: In terms of having access to treatment, actually, things have been improving in South Africa, but not by any stretch of the way as much as people think that it's possible, given South Africa's economic standing. Right now, out of the--I suppose--983,000 people that an actuarial group in South Africa estimate needs treatment right at this moment, about 225 people are either in the process of being put on treatment or have treatment. And there's some debate as to whether it's 100,000 or 225,000, and that's in the public sector.
CONAN: Mm hmm.
WILSON: I mean, because it's a fairly well off country, to some extent, there are people who are HIV positive--if they work, if they can afford to pay for their treatment. There are another estimated 200,000 who can afford to pay for the treatment themselves that are in care. So about 500,000 people who have AIDS and need treatment right now, so that it will extend their lives and keep them healthy, don't have it. And they're -- you know, that's only, you know, about a fraction or so of the five million people who are infected, so...
CONAN: In South Africa, and it's…
WILSON: In South Africa.
CONAN: …pointed out, South Africa's relatively well off for that part of the world, and indeed, the situation is far more dire in other parts of the continent.
WILSON: Right, but it's sort of interesting, the countries that have made the most progress throughout Africa in getting people on treatment--I think Botswana, but it's a very small country, and it decided to do universal access to treatment--Botswana, Uganda, and Zambia.
CONAN: Mm hmm.
WILSON: And that was through the help of one, the United States, the president's emergency plan for AIDS relief, the global fund to fight AIDS and tuberculosis and malaria.
CONAN: Mm hmm, mm hmm.
WILSON: So, 1.3 million in developing countries, most of that scale up occurring in sub-Saharan Africa, that aids 100,000.
CONAN: Graham, does that answer your question? I think Graham's left us, but thank him for his call.
Brenda, let me ask you, you've--we've heard the profiles of other young women in Africa, and specifically in South Africa, that you've broadcast--people who are absolutely terrified of going public in any way, with the idea that they had HIV, even afraid of taking a test. In that regard, how common is Thembi's story?
WILSON: I mean, I have met some remarkable young women. And I think what is sort of wonderful about Thembi and many of them is that I think once they discover that by coming out that, in fact, they do--their circumstances improve tremendously. And as one young man said to me, who was driving me around and assisting me in producing these stories, he says, you know, I think that we must do like the Thembis. And I remember one young woman name Mazookoos(ph). You must tell, because if you keep it inside you, it will kill you. It's much better to come out and be open about it. But the reality is somewhat different.
The Nelson Mandela Foundation did a survey, and at the time that it did a survey of about 24,000 South Africans, it also tested about, you know, a large number of them, the majority of them, for the virus at the same time. And it found that, you know, half of the people who were HIV positive didn't know it.
And most of them know about HIV, they know about AIDS. They talk about it with their families and their friends, but they decide that somehow it's not them. They're not infected, it doesn't affect them. And I think that's human nature. I mean, the truth is, in the United States, a fourth of the people who are probably HIV positive don't know it and won't go be tested to find out. I think people dread wanting--knowing. It's a very difficult thing to come to terms with.
CONAN: Let's get another caller on the line. This is Mike, Mike calling us from Oakland in California.
MIKE (Caller): Yes, first I wanted to thank you for having the show, and to thank you for--thank your guest for the courageous act that she's undertaken. And my comment, as someone who's lived with HIV for almost 20 years, is, I--my question is, how does it affect you on a day-to-day basis? As in, how often do you think about it? And what happens when you do?
CONAN: Do you think about HIV, your disease, every day?
Ms. NGUBANE: No, I don't think about it every day. I almost forgot that I have HIV. But when I kind of get an infection, something like a flu, that's when I start to get worried. And that reminds me that, okay, I have this flu. What if it turns out to be something more than a flu? And that reminds me that I have HIV. So my immune system is very weak, so I must take care of it suddenly.
CONAN: I'm sure you think of it twice a day when you take your pills, too.
Ms. NGUBANE: Yeah, also that.
(Soundbite of laughter)
CONAN: Also that.
Ms. NGUBANE: But, I don't think about it. I just take my pills. Yeah, I'm so used now to taking pills. It's more like every time I take them, I'm reminded.
CONAN: Mm hmm.
Ms. NGUBANE: At first, it used to be like that, but now I just take my pills.
CONAN: Mm hmm. Mike, do you think about it every day?
MIKE: I'm in the same boat. At this point, I've been fortunate to have very good medical care, and I only think about it when I have to take the pills, and even then, it's just, you know, I have other pills that I have to take because I'm getting older. So, you know, it just becomes part of the routine.
Ms. NGUBANE: Yeah.
CONAN: Hm. Did you think, though, 20 years ago, Mike, when you were first diagnosed, that you'd be still complaining about the pills 20 years later?
MIKE: Well, I wasn't thinking about complaining about the pills, but I made the decision when I was diagnosed that I wasn't going to let it kill me. And I lost my first partner, who died over 11 years ago now. But we just had different attitudes about it. And although a good attitude won't necessarily guarantee your survival, a bad attitude, or a hopeless attitude will pretty much guarantee that you won't has been my experience.
CONAN: Thembi, is that, would you agree with that?
Ms. NGUBANE: Yes, I agree.
(Soundbite of laughter)
CONAN: Thanks for the call, Mike, and we're sorry for your loss.
MIKE: Thank you, bye.
CONAN: Brenda Wilson, let me ask you something. The story that you broadcast of this woman who was refusing to be tested, this was in a rural area of South Africa, and this had to do a lot with gender politics in the country. This woman was married and afraid that her husband's family would throw her out and she would have nowhere to go if they found out she was even tested for AIDS.
WILSON: Yes, and I guess it's important to understand that this was 2003, not that long ago, but it was a rural area, and there's some indications that attitudes in rural areas may be somewhat different than they are in a urban setting, where there is increasing awareness, where they do have the positive T-shirt campaigns.
But it was sort of interesting, it wasn't just the woman whom the nurse was trying to test for the virus. I turned at one point during this process and asked the nurse how she felt about it, and she goes, well, you know, our situation here, even though I'm informed and I know what my risks are, we're just kind of not in charge of that. So, it is recognized even now.
I mean, 57 percent of the people who are infected in South Africa--or more than half, at least to be safe--are young women, and they're between the ages of 15 and 24. And they're much more likely in that age group than young men. And often because their partners are older men. Not all the time, but often. Because I think it's much more difficult if you're a young woman, depending on your circumstances. You have less economic independence, you may be the dependent person in relationship, and I think older men just--it would be difficult for a young woman to negotiate a relationship, to negotiate the use of a condom, even though there seems to be increasing use of condoms there.
CONAN: Mm hmm. Thembi, let me ask you: you got AIDS from one boyfriend, unwittingly, then spread AIDS yourself to your boyfriend, unwittingly. You did not know you had it at the time. How do you deal with both the anger of being infected by somebody and the guilt over infecting somebody else.
Ms. NGUBANE: Well, at first I was angry at my boyfriend who passed away, because he didn't tell me about his status. He hide it. He hide his status from me and then he infected me.
When I, a little bit later realized that I don't have to be angry at him. Maybe he didn't know. Or I guess, it's not something that I could hold onto a person and be angry. It just happened. So, I must just take it as it is.
But for infecting someone else, I will never forgive myself for that. Although, also, I didn't know. But, it's a bad feeling. Even though my boyfriend has never been sick, but if I could see him sick, I would be very guilty.
CONAN: Let's get another caller on the line. This is Roger, Roger calling us from Cincinnati.
ROGER (Caller): Yes, first I would like to comment on the effort of Thembi. She's a very brave lady, and the question I have for her is, what advice does she have for young teenagers in order that they do not find themselves in her current situation? The second question I have for her is, does she blame herself in any way for being HIV positive now?
Ms. NGUBANE: Well, I would like to give the teenagers an advice like they must change their minds about what they think about HIV and AIDS. They must not think that it doesn't exist. It's something that is existing and it is in people's blood and anyone can get it. So, they must try to learn more about HIV and stop discriminating people. If you are HIV positive, it doesn't mean you are cursed. Or maybe it's, you did something wrong. You didn't do anything wrong. So, you just have to keep up your, even if you're HIV positive, you just, don't let the disease bring you down.
CONAN: And Roger's other question, do you hold yourself in any way responsible for contracting HIV?
Ms. NGUBANE: Well, I hold myself for that because I don't have anyone else to blame but myself. Yeah. I think I put myself into this situation, so I rely on myself to make it better. I can't blame other people.
CONAN: Roger, thank you very much for the call.
We're talking today with Thembi Ngubane with Joe Richman who's the producer of the piece she broadcast, her audio diary and the producer of Radio Diaries. And with NPR's Science Desk Correspondent, Brenda Wilson, we're talking about HIV and AIDS in South Africa and living with the disease.
You're listening to TALK OF THE NATION from NPR News.
And let's turn now to Amanda. Amanda in Orum, Utah.
AMANDA (Caller): Hi. Thanks.
AMANDA: I was also very touched, incredibly moved by the piece last week on NPR and I just wanted to tell Thembi two things. I think that she may have sought out and Mr. Richman also may have sought out to touch people with AIDS by this piece maybe, but you know, I'm a mom in Orum, Utah with four kids and I live my life, and I was actually driving kids to soccer and it truly moved me and I literally everyday since then have thought about Thembi and have thought about what a different life she lives and how grateful I am and how, what a charmed life I live.
And it truly has moved me and changed me, you know, deeply to know that there are, to see this on a more human level, on a more personal level rather than just talking about AIDS and Africa and what a terrible thing it is. It really brought it to a human level for me to look at my family and to look at myself in the mirror and think, you know, live your life in a better way because you're very blessed and very charmed. So, I appreciate her courage incredibly. I also wondered just because I missed it on both times today and last week, how old her daughter is. I didn't know.
CONAN: Ah. How old is your daughter now?
Ms. NGUBANE: She is one year, four months.
CONAN: One year, four months.
Ms. NGUBANE: Yes.
CONAN: So, a handful.
AMANDA: Thembi, you're wonderful, and I thank you so much.
CONAN: Amanda, thanks very much for the call. We appreciate it.
And she was born without HIV.
Ms. NGUBANE: Yes.
CONAN: Okay. Joe Richman, when you started this project with Thembi, you didn't know she was pregnant.
Mr. RICHMAN: No. That was actually something that happened through the piece. Actually, I had returned back to the U.S. and -- yeah, it actually -- it was a bit of a tricky issue because Thembi didn't tell anyone really for awhile that she was pregnant, including me. And you know, these sort of, this project, these diaries depend on a lot of trust and we had a little bit of a breakdown there. I returned back to South Africa and you know, at that time, usually doing a diary like this, if she, if I knew she had had the baby, then she would have recorded all that. I think that was one of the reasons Thembi didn't want to tell me. She didn't want to have to record all that.
CONAN: Because you didn't record the birth.
Ms. NGUBANE: Well, I didn't want to tell Joe I was pregnant because I didn't want the baby to be in the story. I just know, I didn't, well, it seems so complicated. By that time, I was thinking that because I'm HIV positive, I don't have the right to have the baby. People are going to think that I'm a killer. I'm going to kill the baby by infecting it and maybe they will arrest me at the hospital saying why I'm pregnant while I know my status.
But when the doctor told me that there are some things that they can do to prevent the baby from getting infected, to a mother, that's when I got pregnant. And then I hide it so that Joe could not know because he would say I must record all this pregnancy thing and then when I go to labor I must carry the tape recorder, which I didn't want to do.
CONAN: Hard enough to carry it in to talk to your father. I can understand.
Ms. NGUBANE: So, I didn't want the baby to be in the story because I felt like I had no right to choose for her to be in the story because she's going to grow up. What if she doesn't like what she hears? Maybe, why did you bring me into your story? What if she had some other ideas about HIV and AIDS. So, I didn't want her to blame me.
Mr. RICHMAN: We'll make sure to give her a tape recorder, too, don't worry.
Ms. NGUBANE: I just want, I just want it to be all about me and not include someone that has no say in it.
CONAN: Brenda, is she right in anyway to be afraid of being arrested for having a child knowing she had AIDS?
WILSON: No. I mean, there are no laws against being, you know, pregnant and HIV positive. As a matter of fact, that is how they measure prevalence rates in many countries, it's by checking women who are pregnant to determine what their HIV status is. And that, you know, in some extent, it can exaggerate it, but no. There's no laws against it. I think they've, a lot of people have come in for criticism. I think there's a lot of fear of stigma. And stigma is a, it's a very strange thing. Even among people who are HIV positive in this country.
But they've pretty much almost eliminated the risk of a woman giving birth to a child who's HIV positive in this country. And if they could expand, you know, if they could make available more of the prophylactic treatments, you know, Neviropene or Neviropene and AZT, they could even reduce it even greater in developing countries.
CONAN: We're going to have to take a short break. When we come back, we'll hear more from Thembi Ngubane and her radio diary.
I'm Neal Conan. It's TALK OF THE NATION from NPR News.
Right now, we're talking with Thembi Ngubane about her experiences living in South Africa with HIV and now AIDS. The 21 year old recorded her life story in an audio diary. You can read an interview with Thembi online at NPR.org. You can also see photos of Thembi and download her audio diary if you'd like at our website. That's at NPR.org. Our guests are Thembi Ngubane, she's with us here in Studio 3A. We're also joined here in the studio by Joe Richman, the producer of Thembi's AIDS diary. And by Brenda Wilson, NPR's science desk correspondent. If you'd like to join us, 800-989-8255. 800-989-TALK. The email address is firstname.lastname@example.org.
And let's go to the phones. This is Alyssa. Alyssa calling us from Memphis.
ALYSSA (Caller): Hi. How are you all today?
CONAN: Very well, thanks.
ALYSSA: Great. Thembi, I listened to your story last week. I was very moved by it. It was such a story of hope and triumph despite adversity. I am not HIV positive but was married to a man who was HIV positive. And your story ending, talking about the child made me wonder, what was your one hope that you have for yourself, not for your child? What do you want to do in the time that you have left?
Ms. NGUBANE: Well, with the time that I have left, well, I think that I have much longer time, so I'm just going to do, continue what I do and go to school and just enjoy life as it is.
CONAN: What do you want to study in school?
Ms. NGUBANE: I want to do journalism.
Ms. NGUBANE: Yeah.
CONAN: Amazing how you got into journalism. Joe, what have you created here?
Mr. RICHMAN: Well, Thembi actually just said that she wants to do journalism but not radio. She doesn't want to be behind the scenes.
CONAN: Anything else?
ALYSSA: That is it. That's what I wanted to know, and thank you so much for the opportunity to speak to her.
Ms. NGUBANE: Thank you.
CONAN: Okay. Our pleasure.
I wonder, Thembi, this is your first trip to the United States?
Ms. NGUBANE: Yes, it's my first trip.
CONAN: What is it like being here and getting reactions like this? I know you've been going around various places talking to people.
Ms. NGUBANE: Well, it's wonderful. I just don't want, I don't think I'm going to cope when I get back to South Africa because I will not have all these people running, wanting to interview me and this opportunity to go into radio. Yeah.
CONAN: And you're still going around --
Ms. NGUBANE: Boston.
CONAN: Boston, Los Angeles and Chicago still to come. Personal appearances with Joe Richman to talk about your radio diary. And these are all places you must have read about and seen in movies.
Ms. NGUBANE: Yes, I've seen in, also New York, I was seeing New York in movies. And also, the cabs, I've seen them in movies. So, it was weird for me to travel by a cab, to get into a cab finally. I never thought I would.
CONAN: All right. Let's see if we can get another caller on the line. This is Amanda. Amanda calling us from Granville in Illinois.
AMANDA (Caller): Hi. Thanks for taking my call. Thembi, I'm curious what you do and what your family does to stay hopeful. I mean, all of us have to deal with hardship and I think that hope is the one thing that really keeps you going, but what do you think about that makes you stay positive?
CONAN: What keeps your hope alive?
Ms. NGUBANE: Well, the thing that I like, I like to live. I don't want to, I don't like not being here in this world. I think the world is wonderful. And there are more things I want to get done. So every day I give myself hope that I am only person, so I'm going to push hard and go forward.
CONAN: And when an earlier caller, Mike from Oakland, called in and he said his partner had seemingly given up hope and he was determined to stay alive. And you said you were very much the same way. But, have you seen people in your township in South Africa who have given up hope.
Ms. NGUBANE: Yes, I've seen people that way, HIV positive, and they were hiding. They would not come out. They could not go to the clinic. They could not share or tell anyone about their disease. They were just holding back until they die. And some, it's their choice. It's the family choices. They will say, you can't go to the clinic, you can't tell the community that you have HIV. We're just going to keep you here in the house. And then that person ends up dying.
CONAN: And Brenda, you've done stories about those kinds of people as well.
WILSON: Yes. And, I think partially it's what gets communicated. I mean, to some extent, the South African government has come under criticism for not doing more to get out the message. I think the larger society, the international society, has a responsibility, I think, to developing countries to assist them in providing treatment. Because one of the things I think you're struck by, a lot of people think I must despair doing the stories that I do. And I don't.
One, if you walk into, if you're walking around South Africa, people are not falling down dying. No. People go on with their lives. And you can live with, you know, with the virus. I mean, it is better not to become exposed or infected, but it is not automatically a death sentence. And more just simply needs to be done to get treatment to people.
And, saying treatment, I'd like to correct, it's 200,000 in South Africa, half in the private, and half in the public sector who are getting treatment and that's all.
CONAN: Amanda, thanks very much for the call.
AMANDA: Thank you.
CONAN: Bye bye.
Let's turn now to Marie, Marie calling us from Salisbury, Maryland.
MARIE (Caller): Hello. Thanks for taking my call.
MARIE: Can they, I understand her daughter is only a little more than a year old, so its hard to tell her now what's wrong with you, but have you given any thought to, in the future, how you're going to explain to her what's wrong with mommy?
Ms. NGUBANE: Well, I've been praying for that every day, to get a little bit of more time so that I can see her grow a little bit bigger, so that I can be the one that is going to tell her and explain to her about my disease. I just think that if she can, she could hear it from, coming from me, I would be the perfect person to teach her and to also talk to her about other things that include HIV and AIDS and prevention.
CONAN: Thanks, Marie.
MARIE: Thank you very much.
CONAN: Okay. Bye bye.
And, let's turn now to Zoey. And Zoey's calling us from North Carolina. You're on the air.
ZOEY (Caller): Hi. I'm eight. I really liked your story. What would you tell girls my age?
CONAN: She's an eight-year-old girl. What would you tell girls Zoey's age about?
Ms. NGUBANE: Eight years?
CONAN: Eight years old, yeah.
Ms. NGUBANE: Well, I would tell them the same thing that, well, if you are eight years old you must listen to your parents whatever they say. They are always right. Listen to your parents. And what they tell you at school about sex, you must get more sex lessons at school. They must teach you how to use a condom and all that stuff, because you can also get raped, even if you are not sexually active and contract the disease. Just stay awake, because it is living.
ZOEY: I think you're pretty brave going through all of what you're going through.
CONAN: She says you're a brave woman.
Ms. NGUBANE: Thank you. Thank you, Zoey.
CONAN: Zoey, thanks very much for the call. You're pretty brave yourself to call in.
ZOEY: Thank you. Bye.
CONAN: You're welcome.
Joe Richman, as I understand it, the deal originally you made with Thembi, was that this radio diary would not be broadcast in South Africa.
Mr. RICHMAN: Yeah, you know, the year, by the way, first I was wondering why isn't Zoey in school? But anyway --
CONAN: Spring break, Joe. You remember.
Mr. RICHMAN: The year that she was recording, I think, you know, sort of the story behind her story, in a certain way, is just, I think how Thembi kind of changed her attitude about the stigma issues, sort of in her own mind. And actually I think that happened in her township in the kind of a larger way as well. I think partly because of treatment being available there, I think more people have been coming out because there's a reason to come out. There's treatment, you know?
But I think, you know, that was just kind of one of the kind of paths that Thembi went down over the course of the year of this recording is just kind of how she thought about her own disease and hiding it. And at first, you know, as you say, she didn't want this story broadcast in South Africa, only in the U.S. And she changed, she has changed her mind about that, actually, you know, about halfway through.
CONAN: Why don't we ask her why she changed her mind?
Ms. NGUBANE: Well, I just saw that I'm still hiding if I'm going to tell the other, I'm going to tell U.S. because no one knows me here. The people in my community are going to think still that there is no HIV and there is no AIDS, because they don't see daily faces that live in the community saying that they have HIV. And it's also going to be no use for me to tell other people about my HIV status in not my own country and my own community. I think by telling my story it will also help my community and also South Africa, because it is very much at risk. While their children are still growing and they are going to contract more HIV.
CONAN: The, as we've mentioned, there have been meetings in various cities around this country, in New York, Washington later on, Chicago and various other places, to hear this broadcast and meet you and ask you questions. Can you imagine doing something like that in Cape Town?
Ms. NGUBANE: Yes. I could do that a million times in Cape Town and also in Kylieja (ph) and Johannesburg. Actually when I go back, I just want to travel South Africa more.
Mr. RICHMAN: And that's going to happen. We actually, Thembi's going to be part of this group that does education in schools when she gets back.
CONAN: Brenda Wilson, programs like this and broadcasts like the one this will be in South Africa, this is going to be unusual. This is going to be different.
WILSON: It has happened. I mean, it will, it's not as pervasive perhaps as it should be or needs to be given the rate or the prevalence of the disease in the country, but in some ways, much more revolutionary programs have occurred in South Africa talking about prison rape, talking about teacher rape of children, unfortunately. So, it's not that nothing happens. The Kaiser Foundation has a loveLife campaign. It's just not as pervasive as it needs to be.
CONAN: NPR's science desk correspondent, Brenda Wilson, who has reported so many stories on HIV and AIDS from Africa. Thanks very much for being with us.
WILSON: Thank you.
CONAN: Our thanks also to Joe Richman, producer of Radio Diaries and producer of Thembi Ngubane's radio diary. Thank you Joe, very much, for being with us.
Mr. RICHMAN: Thank you.
CONAN: And Thembi, thank you so much for joining us and telling us your story. And good luck to you.
Ms. NGUBANE: Thank you. Thanks.
CONAN: You're listening to TALK OF THE NATION from NPR News.
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