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.

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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.

Elephant Man: A review

You have one week more to get to see Fourth Monkey’s superb production of Elephant Man at the atmospheric little theatre behind the Brockley Jack pub – and atmospheric is no exaggeration. From the moment the doors open and you search for a seat immersed by the fog of late Victorian London, you will be gripped by the tightness of the script, the minimalist but symbolic scenery and the brilliance of the acting.

As the play’s writer, Steve Green, acknowledges in his programme notes, much has been written about Joseph Merrick and the main protagonists in his story – Frederick Treves, the surgeon, and Tom Norman, the freak-show owner. But this is a powerful exposition of the moral tangle they were all caught up in – of which Merrick was for so long a victim.

The characterisation and ingenious sculpting and dressing of Merrick are particularly distinctive – and Daniel Chrisostomou is outstanding as he suffers the burden of the part, turning from the outcast into a loveable human being. And the symbolism of the last scene was not lost on me as he throws off his shackles, the imprisonment of his disfigurement.

A must-see – and especially as I gather the Broadway version opening in London in May has a different take on the story.

Elephant Man is at the Brockley Jack until 21st February. Further dates in Canterbury, Wolverhampton, Hereford, Dorchester and Bridport. More info…

Revisiting ‘The Elephant Man’

It’s more than two years since I blogged on the greatness of Joseph Merrick and John Hurt, two men who helped, in their different ways, to raise awareness of the difficulties faced by those living with an unusual appearance in today’s looks-obsessed world.

I was prompted to look back at that post after Time Out magazine listed a screening of The Elephant Man as one of the ‘great film events’ happening this week in London. The film critic Mark Kermode is to host a screening of this great film at the Phoenix Cinema in Finchley on Friday night. If you haven’t seen the film before, I’d urge you to take ‘time out’ to do so.

The film shows how Joseph Merrick found an advocate in Dr Frederick Treves, played beautifully by Anthony Hopkins. Sadly even 150 years later in today’s so-called sophisticated world people who look different still need those champions. Here at Changing Faces, we hear daily of the tormenting that far too frequently inhibits and diminishes lives – and that’s not helped by the like of Mind Candy’s Moshi Monsters.

Sadly, the point I made in my original blog about ‘elephant man’ being a lazy yet incredibly offensive term applied in the playground, in the street and even on television, hasn’t changed. Just last month, the Daily Mail ran a story with just such a headline, and our Press Office stumble upon other such stories every week.

And it’s not only about the terminology. Today we’ve learned of ‘I’, a forthcoming Indian film in which the main villain has a facial disfigurement. Apparently it’s the most expensive Indian film ever made, and yet they rely not on special effects wizardry, but on disfigurement to make their point. Here’s the trailer.

The day will come when an unusual appearance is no longer a writer or director’s easy way out of having to think about their villainous characters, but we’re clearly not there yet. This new film is due for release this autumn, and we’ll look out for screenings in the UK and do our best to raise awareness of our Face Equality on Film campaign.

Why the BBC Trust’s ruling on Top Gear matters

It has taken seven long months, much persistence and pages of tough legalistic arguing by Changing Faces to achieve the BBC Trust’s milestone judgment. Jeremy Clarkson and Richard Hammond’s scripted remarks about a car they called ‘the Elephant Car’ did indeed infringe the BBC’s code on harm and portrayal as laid down in their Editorial Guidelines.

Who should take this ruling seriously?

Firstly, BBC – and arguably, other TV – programme makers. The most important passage in the BBC Trust’s decision is this: “The Committee was also mindful that its own finding on this complaint would stand as a reminder to programme-makers of the need to be aware that audiences may find casual or purposeless stereotypes to be offensive”.

Secondly, the Top Gear presenters who, despite the ruling, have persisted in their offensive comments about faces this week on Twitter.

Thirdly, people with disfigurements. Changing Faces exists to improve the quality of life for people with disfigurements and a big part of our effort involves campaigning to ensure that we can all lead a life free from verbal and physical abuse. I hope that lots of people whose faces look unusual will be empowered by this week’s decision to step forward into the spotlight and say ‘Enough!’.

Why does this ruling matter?

Because it highlights just how far we still have to go before Britain’s moral compass shifts to give respect and dignity – without any whiff of ridicule, prejudice, stigma or low expectations – to the 1.3 million people in this country who have a disfigurement to their face or body whether it’s a condition they were born with or acquired later in life as a result of accident, violence, warfare, injury, cancer, skin condition or paralysis.

It is wrong that in 21st Century Britain people like me have to put up with shouts of ‘Phantom’, ‘Alien’, ‘Cor, look at that’, ‘Uurrgh gross’ in the street. It is wrong that children have to endure shouts of ‘Elephant Man’, ‘Pig face’, ‘Freak’ in the playground and then be kicked, punched and spat upon simply because they have an unusual face. It happens and it must stop.

Why are people with disfigurements still fair game for behaviours that would be considered criminal offences if inflicted upon people of different backgrounds, ethnicities or sexuality? We are all protected under the Equalities Act and yet these insults continue. It must stop.

Everyone needs to learn a new respect for people with disfigurements. It starts with the culture and throwing away Victorian freak show’s stereotypes. The new respect is not built on sympathy or pity, and it rejects the vernacular of the medical profession with its labels of ‘deformed’, ‘abnormal’ and ‘defective’.

Instead it acknowledges that we are all citizens with rights, everyday problems, likes and dislikes, lovers and children. It has a new language and way of talking about disfigurement that is factual, respectful and non-judgemental. And that is just the start. We need to question how television and film represent disfigurement, how schools teach about it, how art portrays it, and the written media writes about it. Our entire culture needs a radical overhaul.

On to the next milestone…

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.