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Taking ownership in the fight to destigmatize HIV


Sibulele Sibaca lost both her parents to AIDS when she was 16 years old, causing her and her brother to became a child-headed household. They felt alone, but in a sense they were not: they joined nearly 8.3 million other children who had lost a parent to AIDS across sub-Saharan Africa.

This sense of national togetherness—and their secure and loving childhood, despite the presence of HIV in their family home—would later inspire Sibulele’s work as a South African HIV/AIDS campaigner in the years to come.

“[My father] was a firm believer in education and he took my brother and I to really good schools in Cape Town,” Sibulele, now 35, says. Inspired by his legacy and encouraged by her brother, she completed her education and became a peer-to-peer educator with an HIV/AIDS prevention organization when she was 18.

“They offered me just $50 a month, but I accepted it to help put food on the table,” she says. “And that’s where the love started, because I realized that in helping others, I was healing at the same time. I found so much power in volunteerism and I found so much purpose that I grew emotionally and psychologically. I was strong. I was calm. And I realized the impact then that I had been given the opportunity to make.”

Sibulele at AIDS 2018 conference

Sibulele is an international HIV/AIDS campaigner

Inspiring others to grow

Sibulele is a motivational speaker and entrepreneur. She has campaigned with the likes of Sir Richard Branson and Will Smith, and her first book is poised publish soon. Three years ago, she launched The Sibulele Sibaca Foundation, which positively influences and creates long-term impact in the lives of adolescent girls and young women. There, she works with 300 adolescent girls—not only with children who have lost a parent to AIDS, but also with those from unstable family backgrounds. She offers a curriculum that encompasses practical life skills, entrepreneurship skills, and seed funding for small business ideas.

“Before he died, my father said he needed my brother and I to know who we are, to be able to articulate it,” Sibulele says. “So I owned what had happened to me. I learned that it’s my choice how I’m going to respond to a negative situation, and how to use a negative to push me to greater heights. First of all it’s about telling the story, secondly it’s confidence, and thirdly it’s attitude. We have really amazing stories of some of the things the girls have achieved over the past three years.”

Why do many young people still avoid getting tested for HIV? According to Sibulele, who tested negative for HIV, the chronic medication lines often seen at medical clinics put people off. “We all know what that means. It means that those waiting in the lines are accessing [antiretrovirals]. Young people don’t want to get tested because they don’t want to find themselves in those lines.”

Something has to change

“I was tired of the doom and gloom story. I was tired of the red ribbon. I was tired of people across the continent and around the world thinking HIV and imagining a picture of a dying person,” she says. “I thought, how do I help destigmatize HIV? How do I make it look different to the way it does now? And I thought, let’s own it.”

Her latest campaign, Colour My HIV aims to reduce HIV/AIDS stigma by encouraging all South Africans—no matter their status—to take ownership and share their stories of the virus.

“HIV is a part of us all in South Africa. Almost every household has been touched by it in some way or another. I’m half the person I am today because of HIV, and this is a story of many young South Africans across the board. So let’s all say that it’s our HIV, and let us be the ones to determine how the story ends, together.”

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