Charlie Sheen’s recent ‘coming out’ as living with HIV shone a much-needed light on the stigma that still surrounds HIV and AIDS, and set me thinking about parallels with disfigurement.
It’s more than thirty years since HIV was discovered, and more than twenty-five years since we lost some high profile names to the condition, such as Freddy Mercury. The combined efforts of people like Princess Diana, Elton John and Bill Gates have raised awareness and provided treatment around the world. And yet people still make jokes, discriminate, and make very uninformed assumptions about people with HIV and the treatments available.
After Charlie Sheen’s story broke, one Mirror journalist wrote about how he “deserves everything he gets”. Can you imagine a newspaper publishing a story about a famous person with cancer, with a comment that they deserved it because they’d smoked? Or someone with diabetes ‘deserving it’ because of their diet? But media stigma abounds on HIV.
I find it shocking that anyone would harbour such views about someone’s medical condition. But at Changing Faces we see and hear of such stories every day: people being discriminated against, targeted in hate crime, suffering in schools and the workplace – all because of their appearance.
People with disfigurements also live with other people’s assumptions, and assumptions are often linked with a judgment. In Lexxie’s interview with BBC Radio 5 Live at the weekend, she spoke about how people assume her birthmark is a bruise. Others with scars or asymmetry on their faces report comments to the effect that they ought to get it ‘fixed’. The work that Changing Faces does to challenge these assumptions – disfigurements can rarely be removed, for example – and stand tall against discrimination, is vital not only for the people that we support, but for the wider society too.
I sat with Sir John Hurt – who many will know for his incredible performance in The Elephant Man – at a Project Harar dinner on Saturday. He did voiceover for the chilling 1986 public information television advert on HIV, urging people not to take risks and ‘die of ignorance’. Thankfully, pharmaceutical advances mean that if it’s diagnosed early enough, an HIV diagnosis is no longer the death sentence it once was. But people still have to live with it.
On this World AIDS Day, we should celebrate the medical advances, but commit to ensure that the only thing that dies is ignorance and prejudice.