June/July
2006
Thembi’s
Story
The Satya Interview with Thembi Ngubane
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I feel like if a person
is listening to my story, that person is with me every day. Every
time
she hears a dog bark, it’s like she
is waking up in my yard. I have taken that person to South Africa,
into my shack, into my township, into my everyday routine. —Thembi
Ngubane
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Thembi and Melikhaya. Photo by Sue Johnson |
South Africa has the largest number of people living with HIV and AIDS
in the world. Surprisingly, women between the ages of 16 and 25 years
old account for 75 percent of all new infections. Right outside of
Cape Town sits the township of Khayelitsha. In this vast land of houses
and shacks pieced together with wood planks, tar paper and scraps of
tin lives 20 year-old Thembi Ngubane. Like many other young women her
age, Thembi lives with her boyfriend and their baby and enjoys a close
relationship with her family. She is also living with AIDS.
Thembi met radio producer Joe Richman [see
interview] as
he was interviewing a group of teenagers about AIDS in 2004. He gave
her a tape recorder, and for
a year, her audio diary collected intimate moments and poignant events of her
everyday life. With deep insight and unexpected humor, Thembi’s diary
captures the small moments that help tell a larger story: breaking the news
to her family,
receiving anti-retroviral drugs at a local clinic, being ostracized by friends
and neighbors, and building her relationship with her boyfriend.
We are introduced to her boyfriend, Melikhaya Mpumela, as she recalls telling
him she was HIV-positive, thinking: “What if I’ve also infected him?
Now I’ve ruined my life, and I’ve ruined everybody’s life.” We
learn of the struggle she faced when telling her father about her illness, “I’ve
felt like I have disappointed you...I thought that it was going to break you
into pieces.” And we witness some low points of her illness, “My
face was becoming like bones, I couldn’t walk. Everything that was happening
I thought would never happen to me.” We also witness her strength in coping
with her disease. In fact, Thembi’s strength is what led her to experience
things she never imagined.
Radio Diaries, a not-for-profit organization, helps people like Thembi record
their lives for American public radio; people whose stories are seldom heard.
They are edited and broadcast on National Public Radio. Thembi’s AIDS diary
was aired on NPR’s All Things Considered in April. To raise awareness and
promote her audio diary, this spring Thembi flew in a plane-—for the first
time ever—to visit the U.S., accompanied by Melikhaya. Among other public
events, she took part in a CNN panel on AIDS that was broadcast throughout
the world, which included Bill Clinton.
Kymberlie Adams Matthews had a chance to talk to Thembi
Ngubane while she was
touring the U.S.
How did you meet Joe Richman and become involved in Radio Diaries?
I met Joe while he was in South Africa interviewing teenagers about different
issues. I was kind of curious about carrying a tape recorder and recording,
and also hearing my voice when the tape plays. I wanted to experience that
moment—me
and the tape recorder. I had never had a diary before. So I just thought, “Okay,
why not? It is going to be fun.”
How did you find out you were HIV-positive?
Four years ago I had a different boyfriend. Then he died and no one would talk
about his death. That’s when I realized I needed to have an HIV test.
I went to the doctor and he pricked my finger five times for two hours. He
came
back and told me that I had HIV.
Can you tell me about your relationship with your boyfriend Melikhaya?
Well, since we met we have been great. We are good together. We are best friends.
Was it hard to tell him that you are HIV-positive?
Yes, it was very hard. It was one of the hardest things I had to do in my whole
life. I was thinking so many things, like I could lose him if I tell him. But
at the same time, I was thinking about his health and that I should tell him
so that he could go for an HIV test.
You had a daughter, Onwabo, together. You became pregnant even though you thought
people would be angry and not understanding. Why was it so important for you
to have a baby?
I decided not to record when I was pregnant. I didn’t want to tell anyone
because I felt like I did not have the right to have a child because of my HIV
status. Because everyone is going to freak out and say, “She’s HIV-positive
and she’s pregnant—what the hell is she doing?” But at the
same time, I thought that I needed to have a child, something that I could
live for, something that would be mine. I thought, at least I will have a child
to
leave behind, even if I die. And my family and everyone will see me in that
child. And when the doctor told me that there are medications that I could
use to prevent
a child from getting infected, I realized I needed to risk it. I was able to
take AZT, and I went to the program where pregnant mothers go when they are
HIV-positive. And my daughter came out HIV-negative. She is clear. She has
had her last HIV
test.
Do you ever worry about her future?
I never worry about what if I die. I just don’t want to die when she
is young. I want her to grow a little bigger. She can know me, and I can know
her
better. My mother will take care of her if I die.
One of the struggles you face in your diary is telling your father. Can you talk
a bit about that?
The relationship between me and my dad was always wonderful. I was always with
him. He believed in me, I was his little girl. He didn’t believe I could
do something stupid or something bad. So when it came to the point that I had
AIDS—something I cannot get rid of—it was very hard for me to tell
him. He was the only person in my family that didn’t know about my HIV
status. I was afraid to tell him, that I would disappoint him, that he would
be very stressed out or angry. Or he won’t want anything to do with me
because he believed in me and I let him down. I just didn’t want him
to know. I begged my family not to tell him because I feared what it would
do to
him, it would break his heart. I was afraid that he would not trust me or love
me or believe in me anymore.
But then I just thought that I am fooling myself. I cannot hide this sickness.
I felt like I could tell the whole world, but not him. But he’s my father
and I want him to hear it from me. I have to tell him because now that I am
doing this documentary it is better for him to hear it from me than from the
radio
or a neighbor. If I am going to tell the whole world, my father also has a
right to know.
How is he handling it now?
He was hurt and shocked at the same time. But he was also calm. I think the relationship
has not changed. He is very supportive, more loving. I think he has this idea
that he must be even more loving. He is not angry.
He sounds like a good dad, like my dad, just wanting what’s best for you.
Your diary also mentions the discrimination against infected people in your area—homes
are burned to the ground. Can you tell us about the stigma against people infected
with HIV/AIDS in South Africa?
If you have HIV/AIDS, people just still don’t get it. They think it is
an easily contagious disease. If you stay around someone with HIV then maybe
they can infect you. So if you disclose it or they hear that you are HIV-positive
then they don’t want you around them anymore. At first I didn’t want
anyone to know about me, but by the time I got sick, my community suspected.
They started to stare and point and give names. So I just thought to myself,
why the hell am I hiding [when] they can see it? I don’t think anyone
can hide the sickness.
You have a very intimate way of talking. And one thing that really inspired
me
was your HIV prayer: “Hello HIV you trespass. You are in my body. You have
to obey the rules. You have to respect me and if you don’t hurt me then
I won’t hurt you. You mind your business and I’ll mind mine. And
I’ll give you a ticket when the time comes…” Why did you start
saying this?
Well, I just felt like I would get so angry at this thing inside. I needed
to tell this thing that’s living inside of me how I feel because it is
the cause of the anger. So, I think okay, if I am angry I will just talk to
it. Help
the anger go away.
How is your health now? In your diary, your CD4 count was 167, which is critically
low.
My CD4 count is now 350. It’s been going up ever since I started ARVs [anti-retroviral
drugs]. But before ARVs, I was sick. The doctor told me that my CD4 count was
very low. I just kept telling myself there is nothing to worry about. I looked
healthy. But I did get sick, I was very scared. I thought, “If the doctor
says I must take anti-retroviral drugs because they are the only thing I can
take to make me better, I must take them.” I now take ARVs for the rest
of my life.
Your diary helps educate the public on getting tested and treated for HIV/AIDS.
What about prevention? What do you think needs to be done to help prevent HIV/AIDS
spreading in Africa?
I do talk about prevention and using condoms and getting tested. I believe
with teenagers you have to talk about those things because you can’t talk about
prevention only. Teenagers are going to do what they want—you can’t
tell them no. Because most of the children, where I live, they have already experienced
sex. Because we don’t have anything to do that is fun. Sex is free. Sex
is fun. And you can’t get arrested from having it. But [you can tell
them] how to be safe.
What do you want listeners to learn and to take away after having heard your
story?
Well, I just want everyone to change their minds about what they think about
HIV and AIDS. To not have unprotected sex. Also, not to hide. I know how it
feels to hide. Everyone can swallow their pride because hiding won’t help. It
will come out and it will show. You can’t hide your sickness from the
doctor.
Part of doing the Radio Diaries is to spread your message. Do you consider yourself
an activist?
I don’t consider myself an activist. It is just what I want to do. It is
what I believe I can do best. Just to help other people. I will be talking to
schools. I would love to do educational programs in South Africa, especially
in townships. I would love to tour all of South Africa. The townships are where
a lot of people live, it’s where a lot of people are hiding. You could
go to one house in a township, and here are 10 people, maybe five of them are
sick. They don’t even know they are sick. Our parents struggled against
apartheid, they wanted to be free. And it is the same with HIV/AIDS. This is
the new struggle.
You are so outgoing, so upbeat. How do you stay so positive?
I think it is because I want to be alive. Life has a big influence on me.
To listen to Thembi’s Radio Diary and for more information visit www.radiodiaries.org.
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