HIV Disclosure: Privacy, Pressure and Public Health

Adia Benton spent two years looking at HIV support groups in West Africa. What she saw unsettled her. "It calls into question what international programs like this do to people," she tells us. Benton is an assistant professor of medical anthropology at Brown University and author of the new book, HIV Exceptionalism: Development through Disease in Sierra Leone. Internationally funded HIV support groups often urge people to disclose their status. But Benton cautions that not everyone is comfortable going public with their illness. "A lot of it is about fundamental assumptions people make about Africa, which is that it's a community-oriented place where people do everything in the collective and for the collective good. But in fact there are people who are very private, and discretion is very much prized." The public health benefits of disclosure are clear: it reduces stigma and rates of transmission and can help HIV positive people to feel less alone. Even so, Benton found many HIV positive people had mixed feelings about disclosing or did not understand why they had to speak out. "People are very ambivalent about this because they want to contribute to public health but they also want to protect themselves," she says. "It's a difficult juggling act. I heard a lot of people, or leaders, pressuring others to be 'good activists'. They wanted everybody to be a good activist and they wanted everybody to be a good advocate, and not everyone can do that."