Thembi Ngubane’s Story: HIV and AIDS Acceptance

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By Sayantani DasGupta

“Our parents struggled against apartheid, they wanted to be free. And it is the same with HIV/AIDS. This is the new struggle.” – Thembi Ngubane

Thembi Ngubane was a 19-year-old South African woman from Khayelitsha township, outside Cape Town. She never thought she would inspire people from around the world with her life’s story. Surely, she never thought she would continue to be an inspiration even after her death.

But when Thembi was given a tape recorder by NPR’s Radio Diaries, and asked to record the day to day experiences of her life as one of South Africa’s millions of HIV+ youth, everything changed. In light of the severe social stigma that remains around HIV and AIDS in Southern Africa, Thembi had until then been relatively silent about her condition. Even when Radio Diaries played segments of her story on National Public Radio in the U.S., she did not want her story broadcast in her home country.

Yet, in the personal to political tradition of so many social change movements in the U.S. – the 1970’s feminist movement, the civil rights movement, and now the body acceptance movements – Thembi took her personal story and connected it to a broader global movement around HIV and AIDS acceptance. She traveled to the U.S. and met with former President Bill Clinton and then-Senator Barak Obama. In March 2007, she spoke to the South African Parliament about the need to address AIDS-based discrimination in her country. Indeed, in the sheer act of telling her story, Thembi galvanized a movement around acceptance of HIV and AIDS both in South Africa and around the world.

In Thembi’s words, “I wanted to reach other young people who are also infected with HIV, who are hiding, who are afraid to come out and disclose their status. I thought that I would be affecting someone’s life, helping some person who maybe has not disclosed his status or some person who has not been tested.”

There is something incredibly powerful about one voice telling one story about one life. Thembi’s tale affected listeners of diverse nationalities, genders, and embodied conditions. In bearing witness to a traditionally marginalized story, listeners became changed. In the words of one listener,

“Thembi inspired me, enlightened me, made me cry, and made me laugh. To be so far away, I can hear her story and see her pictures and she is not foreign to me. She is African and I am African-American but we are sisters because her spirit reminds me of my mother, my sister, and so many strong vibrant women in my life. The best thing about her story was that I didn’t feel sorry for her but simply and wonderfully inspired by her. To be a better person, become more selfless, and to give more. My prayers are with her and Africa.” —Listener from Rowlett, Texas

During this time, Thembi became pregnant, and gave voice to the experiences of HIV+ mothers. In the words of another listener,

“I was completely engaged when I heard Thembi’s voice describing her existence with AIDS. I became extremely emotional over the fact that a young woman such as Thembi had not only come to terms with her illness but with the hope that she could become a mother and hopefully avoid her daughter from being infected. Often times we can become judgmental about hearing stories of women having babies with that are ill. However, I heard such a sweet and honest voice in Thembi describing her desire to bare a child…. someone she could live for. Thank you Thembi for sharing your story with us.” —Listener from Anaheim, CA

In courses I teach on narrative, health and social justice, I often use Thembi’s radio diary as an example of how telling one’s personal story can be used to enact broader social change. And inevitably, my students and I are moved to tears, as we witness, honor, and stand beside Thembi and all the other young women like Thembi, like ourselves, who only want to speak, to tell, to declare “I am.”

Thembi’s AIDS Prayer:

“Testing, 1-2, 1-2. Test, test, test.

Hi this is Thembi.

It’s time for my prayer. Every morning when I wake up, I run off to my drawer, take out my mirror, and look at myself. Then I start to do my prayer.

I say it every day, every time when I am feeling angry. Like when you are angry at someone, you always have that thing in you that you have to tell that someone what you feel.

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 will mind mine. Then I will give you a ticket when your time comes.”

Thembi Ngubane died in 2009 from multi-drug resistant tuberculosis at the age of 24.

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Comments

  1. Hi Beverly,

    Thanks for the comment! It’s interesting — the man behind radio diaries, Joe Richman, actually came to the college I teach and spoke about Thembi to my students. He said, honestly, that he too had really fixed ideas about women with HIV becoming pregnant (in fact, Thembi stopped recording her audio diaries while pregnant – because she feared everyone’s censure – and he only found out afterward). It was only after listening to Thembi – a young woman so full of hope and promise and love – wanting to share that love with a child, and her her boyfriend/partner – that he understood that they key is helping women access the medical care and treatments that in fact greatly minimize the risks of passing the virus onto their infants.

    Thembi’s baby, from what I understand, was born healthy, HIV-, and is being raised by her boyfriend/partner as well as Thembi’s mother/siblings.

    As a mother myself, I understand your sentiments – particularly the notion of a mother as a child’s “fiercest protector.” I think Thembi had so much energy, and was doing so well, and she certainly wasn’t planning to die and leave her child I’m sure, when she did (when people have access to the incredibly expensive medications, AIDS is a chronic disease these days.. people live for decades..)

    It’s a complex issue but I think, to me, the individual story lets me understand and empathize and enter into what’s going on – but my reaction/action is always to think about the systems level change. In this case, the critical import of giving all HIV+ women access to medical/reproductive care and treatment. Here is more information on the steps that can be taken to avert mother-child transmission of HIV: http://www.avert.org/motherchild.htm

  2. Greetings, SheWrites sister here. Wonderful story, wonderfully inspiring woman. I do feel conflicted, however, over Thembi’s decision to bring a child into the world, knowing she had this illness. On the one hand, I fully support her desire not to “play dead” and put her entire life on hold, because some people with HIV live for many, many years. And am awed by her courage in sharing her story.

    On the other hand… I lost my own mother to breast cancer before I was a teenager, and my life was rough before, and rough afterwards, because of her illness and then her absence in my life. I would not knowingly risk doing that to another child. Especially I would not risk potentially orphaning a child who might herself be ill with HIV, leaving her without her fiercest protector. How is that child doing now, I wonder?

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