New year, old stereotypes

Happy New Year everyone – and I’d like to start on an upbeat note … but sadly not.

‘The Undateables’ returns to Channel 4 for a new series on Monday night.

For the last four years, this series has brought together people who have medical conditions, disabilities and disfigurements with others with similar conditions (and in some cases no conditions) in an attempt to find love.

undateables

And the good news is that there have been some notable successes, such as Brent and Challis, and our very own Steve and Vicky, whose wedding we’ll see in the new series. Sadly, however, the directors have made no attempt to correct the impression that people who look unusual don’t have love affairs – of course they do! And without the need for a TV show!

But like many programmes from the production company ‘Betty’, my biggest issue is with the show’s title.

As Changing Faces said before the first series back in 2012, the title ‘has the potential to cause unnecessary offence, to perpetuate stigma and encourage abuse or harassment of people with facial disfigurements and disabilities’.

Last summer, the issue was raised at the British Medical Association conference, when doctors accused the programme of exploitation; earlier, the UK Disabled People’s Council said the programme ‘posed a threat to the rights of disabled people under the UN Convention on the Rights of Persons with Disabilities’, and said it was ‘unwatchable’. Jessica Middleton provides an insightful analysis of the title in this blog on The Badger.

Clearly, however, the fact that the programme won a BAFTA nomination, high ratings and lots of social media noise indicates that it’s anything but unwatchable. But if you care to look at the social conversations taking place, many of them follow the line: “I hate the title, but love the show”.

One of the most troubling effects of the show’s title is the suggestion that people who have a disability or disfigurement are outsiders, people you wouldn’t expect to find on Tinder, or meet in a bar, or at a speed dating night. Other dating programmes perpetuate the stereotype.

I’m no fan of ‘Take Me Out’ – it’s rather vulgar in my opinion – but why has it never featured someone with a disfigurement amongst the 15 female contestants in each show? I’m sure some ‘Take Me Out’ fans will remind me of Tony, the man who lost a leg in a football accident, who appeared on the show. But he was the sole male contestant – choosing from fifteen female contestants. Hardly a balanced position.

Slightly better is the other Channel 4 hit, ‘First Dates’. In the last series we met Chuks, who was born with short arms. And in the new series – beginning later in January – we’ll see Arunima, who’s a wheelchair user. And so whilst we can – gently – applaud ‘Take Me Out’ and ‘First Dates’ for having some representation of disability, neither have ever shown someone with a facial disfigurement.

Is that because a facial disfigurement is just too undateable? Could it be that four years of perpetuating the myth of someone with a facial disfigurement being unlucky in love has pushed this form of physical difference beyond the pale?

Proof of the negative way that the title has played out comes in a number of forms. TimeOut magazine has an ‘undateables’ column in their New York and some other editions. Instagram and other social media channels are full of people, mainly teenage girls, complaining that they are ‘undateable’ on account of their looks. Even Battersea Dogs Home now use the word to describe hard-to-rehome pets, animals that the Dogs Trust have called ‘sticky dogs’ for a number of years.

Last spring, on the Changing Faces Facebook page, we invited our supporters to submit photos of their wedding day. It quickly became our most popular Facebook post ever, demonstrating that people who look different don’t love any different. Indeed, our recent supporter survey found that more than two thirds of our supporters are either married or living with a partner. Only around one in five said they were single.

And if you’re wondering: I’ve just spent a wonderful family Christmas which included celebrating the wedding of our third ‘child’.

Changing Faces publishes guidelines for broadcasters on the importance of the language they choose to use – and that includes in their titles. They align with our guidelines for journalists, with which we regularly challenge newspapers – sometimes with some success.

In my view, it’s not good enough to say, “Oh, it’s just a title, the programme is good once you watch it”. Three million people may do that. But what about the attitudes of the rest of the population? Still shaped by such worn-out stereotyping, I’m afraid.

Rightly in 2016, we wouldn’t tolerate a show about women looking for love called ‘Lesser Sex’, nor one about lesbian, gay or bisexual people called ‘Queer Love’. For me, ‘The Undateables’ is just as offensive, and until production companies and broadcasters can be responsible with their show’s titles, we’ll remain a depressingly long way from achieving face equality, eight years on from the launch of our campaign for it.

Let’s make 2016 a year to throw out these titles once and for all!

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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.

From isolated recluse to respected citizen – a tale of two people

I was so delighted to be invited to comment last week on the extraordinary meeting of Richard Norris, a face transplant patient, with his donor’s sister, on the BBC and a number of other news outlets. (You can watch me on the Victoria Derbyshire Show on BBC Two from 31m 35s here.)

Here was a man who had lived ten (or even 15) years in isolation, ridiculed and terrified of other people’s reactions to his face after a shooting accident left him with a severe disfigurement.

Richard’s ‘new’ face does indeed make him less noticeable in everyday life. He will probably now be able to walk down the street without so much staring – although his media notoriety may attract a different sort of attention. But as soon as he is into a social interaction, he will, as ever, have to manage other people’s reaction to his disfigurement. I hope he now has access to the sort of help to enable him to develop the communication skills to do that successfully.

Three years ago, I wrote of the very significant transformation that the face transplant operation had achieved for Richard Norris. And I bemoaned the fact that he had not had access to the sort of empowerment that Changing Faces specialises in and advocates for – our self-help guides alone can be very helpful.

Earlier this week, I was in Sheffield hearing a very positive report of the first few months of our Changing Faces clinic in primary care which was launched in February (see this BMJ report).

Sadly, during my journey to Sheffield, I became aware of some of the words used in the media in reviews of Bradley Cooper’s performance in The Elephant Man, which has recently opened in the West End. I have yet to see this production and am much looking forward – it will take quite something to better Fourth Monkey’s production which I saw in February.

Joseph Merrick was born in 1862 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 general consensus today is that he had Proteus Syndrome. Merrick offered himself to a music hall and a freak show 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 in public, he stood his ground proudly.

His life was gradually transformed by the humanity of Dr Frederick Treves who enabled him to become a respected citizen free from the abuse and ridicule that had so debased him. No longer were words like ‘horrifically disfigured’, ‘ugly’, ‘grotesque’ and ‘monster’ used to his face or about him. Those who met him in Victorian England came to revere him and respect his rights. He was one of the first champions for ‘face equality’.

It beggars belief that over 150 years later, some sections of our media believe it is acceptable to continue to peddle prejudice using the very same words that had belittled and tarnished Joseph’s life – and Richard’s and many other people’s whose faces are unusual.

Earlier this week we asked for the tasteless prejudice in one online review by a widely-read and supposedly popular pundit to be removed and were shocked to receive this in reply:

quentin

I am not sure that Mr Letts will see how offensive he was, perhaps unthinkingly, and apologise. Changing Faces’ press office sent its media guidelines to all theatre critics and reviewers several weeks ago, to avoid such language being used. Clearly Mr Letts didn’t read them – or didn’t care.

But I am sure that it has given a further boost to my determination to extend our campaign for ‘face equality’ to eliminate the injustices faced people with disfigurements in Britain and around the world. Our media guidelines need to be embedded in every media outlet.

I am looking for some serious sponsorship for our next campaign so if you think you and/or your company would like to help, please get in touch. Thank you.