Now heard - children's voices on HIV/AIDS

A group of rural primary school children in South Africa's KwaZulu-Natal Province are helping to break the silence about HIV/AIDS by recording their "autobiographies" for radio. The project is a collaboration between the University of Cape Town's Children's Institute, Zisize Educational Trust, a local NGO, and Okhayeni Primary School in Ingwavuma, with the goal of enabling children to talk to adults about HIV and raise public awareness about how children are affected by the disease. A group of 10 pupils aged nine to 13 began participating in radio-training workshops in April last year. HIV prevalence in the region is among the nation's highest - 35 percent - but it is rarely talked about openly, especially with children. But confronting adults with microphones and asking questions about how HIV has affected their families, where it comes from and how they can protect themselves from it has changed this. According to Helen Meintjes, a senior researcher at the Children's Institute, research about children and AIDS often tends to portray them only as victims. The children began by exploring what was important to them and compiling books about their lives. Although they were given no instructions to include it, "HIV came up in an indirect way when we talked about what makes them sad and they spoke about people they'd lost, and going to funerals," said Bridget Walters, of Zisize Educational Trust. They learned how to record interviews and combine these with their family histories and colourful descriptions of the surroundings to produce radio autobiographies in Zulu and English, providing a rare insight into the reality of growing up in a poor, rural community - fetching water and firewood, playing soccer and watching cars pass through the neighbourhood. Prettygirl, 11, used her six-minute programme to speak about her dying mother's HIV-positive status and the promise she made to care for her younger sister. "To play a mother's role is not nice," she commented, "because there are things that you can't manage to do as a mother would do."

Seen and Heard In these extracts from the children's radio programmes, Prettygirl and Lindo share stories of life after the death of a parent, while Zama narrates her trip to the pump to fetch water. For more extracts in Zulu and English, go to the project web site at http://web.uct.ac.za/ Listen to extract

Most children refer to the death of parents and relatives without naming the cause. Lindo, 11, who lost his mother a year before he made his programme, asked his grandmother, who replied, "She was sick and coughing, her chest was sore, she had diarrhoea and vomiting, and then she died." "I was afraid to ask father about what mum had suffered from, and about her death," Lindo said later in his recording. Several expressed frustration that adults did not talk to them about HIV. In a society where children are often seen but not heard, Meintjes said, "Having a microphone in their hands empowered them to ask questions they wouldn't normally ask." Given Ingwavuma's isolation, the choice of radio as a medium was natural. "This is an impoverished area with massive unemployment and a lot of reliance on [social] grants," Meintjes commented. "Very few of these kids have even gone beyond Jozini [the nearest town] and many of them don't have electricity, so there is little television, let alone the internet." After the programmes were broadcast on Maputaland Community Radio, a popular local station, the children attained a certain level of local celebrity. A CD-ROM of their programmes has been aired on national radio and will reach an international audience at the 'Envisioning the Future Symposium', a side meeting at the International AIDS Conference in Toronto this August. What began as an experiment has spawned many unexpected benefits: the project will become an ongoing programme, building confidence and highlighting other issues affecting children in the area. This year a new group started work on their radio autobiographies, while last year's group graduated to producing reports. "We had many topics ... but we thought this [HIV/AIDS] was the most important one," explained Sandile, 12, "because people in our community neglect this and most people, when they are HIV positive, they hide it until they die." The children interviewed a nurse who cares for HIV-positive patients, a home-based caregiver, a woman living with HIV, one of their group who was orphaned by HIV, and children at their school. "We asked [school mates] what it's like growing up in a community with HIV/AIDS," recalled Sandile. "Some said they wouldn't want to sit next to someone with HIV." They also learned that much of what they thought about HIV was incorrect. "I thought that families would chase away someone who was HIV positive, but I learned that families can support them," Sandile said. "I learned that a person living with HIV can live a long time," added Prettygirl, "and that people who take ARVs [antiretrovirals] can look like people who don't have HIV." With funding from the Open Society Foundation and Stop AIDS Now!, a coalition of Dutch NGOs, the focus has shifted to building the capacity of local role players like Maputaland Community Radio and Zisize Educational Trust to run the project. Close to 22 percent of South African adults are estimated by UNAIDS to be living with the virus. Out of 840,000 people in need of immediate treatment, the government's free ARV programme is reaching 140,000.