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.

Advertisements