It has been amazing this week to read all these remembrances and quotes and summaries of the greatness of Nelson Mandela. While he was clearly a flawed and imperfect human (like each of us), he was clearly a great man who brought about great things. I am especially amazed by how someone walks out of 27 years of unjust imprisonment into a legacy of forgiveness and reconciliation. Amazing.
I am also struck by how he recognized the less-visible prisons that still restrain so many. Prisons of poverty, lack of education, stigma. Especially, I notice his attention to stigma.
The stigma of HIV imprisons so many of the families that I work with in Kenya. It keeps them hiding their medicines and hiding their diagnoses for fear of discrimination and losing all that they hold dear. It prevents them from telling their children that they are infected with HIV out of terror that those children might let this terrible secret slip out. It weighs their hearts down every day — until they believe that they should be ashamed, until they believe that they are dirty and unworthy and less than.
Mandela saw this stigma around HIV for the prison that it was. And he especially saw the vulnerability of the children – my children – children who are living with this virus in their blood or who have had their parents stolen by this virus.
“The stigma and discrimination inflicted on these children are atrocious and inexcusable,” he said. “Many people suffering from AIDS and not killed by the disease itself are killed by the stigma surrounding everybody who has HIV/AIDS. That is why leaders must do everything in their power to fight and to win the struggle against this stigma.”
Nelson Mandela said that back in 2002. And he didn’t just talk about it. He held babies with HIV. He made world leaders, old men who hold babies with the awkwardness of unfamiliarity, hold those babies too. I love it that he visited and held these babies with this virus. And that he brought the magnitude of his voice and his spotlight to the issue of HIV-related stigma.
Bill Gates said that this is what he remembers most and respects about Mandela: “This was something we talked about a lot every time we met: How could we fight stigma and spread reliable information about the disease?”
I’m turning to work in a major way on HIV stigma in the next few months. We’re starting with focus groups and discussions with children and parents and other caregivers in Kenya – all about how stigma in their communities and homes shape the experience of having HIV. We have talked about this a lot before, but we want to start to understand much better how stigma works in this setting. All because we want – we need – to lessen the impact of stigma for families with HIV.
“Atrocious and inexcusable.” Mandela called this stigma what it is, and I draw strength from his call that we must do everything in our power to fight and to win the struggle against this stigma.