World AIDS Day

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.

Celebrating two Giant Men

Joseph Merrick was born 150 years ago this August in Leicester and although he only lived 27 years, became something of a celebrity in Victorian England. His condition was not properly diagnosed during his life but he is now thought to have had combination of neurofibromatosis type I and Proteus Syndrome. Merrick offered himself to a music hall in order to earn an income and so escape the workhouse – a social entrepreneur of his day, you could say – and although paraded and ridiculed mercilessly, he stood his ground proudly.

His notoriety was beautifully conveyed to cinema through the superb acting of John Hurt, so rightly honoured at the BAFTA Awards for his amazing 50 years in cinema and theatre, in David Lynch’s 1980 film called The Elephant Man. He gives a beautiful interview which I encourage everyone to watch.

Joseph Merrick and John Hurt – who is also a Patron of Project Harar in Ethiopia, an NGO supporting children with facial disfigurements – are dignified advocates for the rights of people with unusual-looking faces.

Sadly, in today’s culture, respect for this remarkable human being has been replaced by the use of his assumed freak show name as a term of ridicule – applied to children who look different in schools and, so far without apology, by well-known and well-paid presenters of a popular TV programme about cars (see the PS below).

My purpose here is to celebrate two Giant Men who, in their different ways, have helped to raise public awareness of the difficulties posed for those who look imperfect in this look-perfect culture. Joseph and John, I salute you!

 

PS: See our press release which was well-covered in the Telegraph and the Guardian; and the offensive remarks too, about 17 minutes in.

If you’d like to add to our effort, please contact the BBC  and Ofcom  and add your personal complaint. We have asked for a public apology from Jeremy Clarkson on the programme and asked that the BBC works with Changing Faces again to refresh its policy on face equality.