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.

Face transplantation 10 years on…

Isabelle Dinoire

Isabelle Dinoire pictured in 2009

Hats off to Isabelle Dinoire! Ten years ago today, she signed the consent form to receive the world’s first face transplant – and I wished her well three days later when she appeared in front of a massive press conference – and I wish her well again today.

She deserves the gratitude of people with severe facial disfigurements because she was willing to take what the Royal College of Surgeons’ Working Party in November of the following year called ‘a leap into the dark’.

Of course, not that many people have been willing to take such a leap but around thirty have done so worldwide. Some of the transplants have been immense undertakings involving skin, bone, muscle and much more. Sadly, some patients have died – one at least because they failed to conform to the immune-suppressant drug regime; others probably because the graft has failed.

But most patients survive – and some have told their stories in graphic detail expressing gratitude to the donors’ families and the surgical teams – see the New York Times and The New Yorker in 2012, for example, and this week’s interview on BBC Newsnight and this from a Polish man.

Ten years on, I think several things are clear:

First, that face transplantation is still in its research phase but is proving itself as a very effective method in the surgeon’s armoury for dealing with the functional and aesthetic issues posed by severe facial disfigurements from traumatic and other causes.

Second, that the very complex and highly individualistic challenges of preventing graft rejection and designing effective immune-suppressant drug regimens are being tackled – but there is little public knowledge about patients’ experiences.

Third, that the psychological and social benefits have been well-expressed by those who have gone public – but I continue to be concerned about the quantity and quality of the pre- and post-transplant psycho-social support to both the patient and their family.

Fourth, patients can take on another’s face but their sense of identity is not easily regained – as Isabelle herself expressed in 2008: “It’s not hers, it’s not mine, it’s somebody else’s… Before the operation, I expected my new face would look like me but it turned out after the operation that it was half me and half her… It takes an awful lot of time to get used to someone else’s face. It’s a peculiar type of transplant.”

Fifth, whilst some donors’ families have been willing to go public, I worry that donor family support and privacy have not been given as much attention as they merit.

And sixth, and finally, the media coverage has raised public awareness that face transplantation is a remarkable procedure that can offer improved appearance and functioning for people with severe facial disfigurements – but it is not a magic wand.

In the month after Isabelle Dinoire’s leap-taking, I wrote to the president of the Royal College of Surgeons of England to ask that he and the RCS Working Party update its 2003 report on face transplantation (which had been very hesitant). Last night I re-read the outstanding 2006 report and marvelled at its wisdom – it is the most informed public document about face transplantation and established the highest ethical benchmark for British research teams.

One of my concerns as face transplantation becomes a frequently-used procedure in the next decade is that inexperienced clinical teams will ‘have a go’ – and I think there is a risk that the learning by research teams is not being shared as widely and fully as it could be. I am going to write to Clare Marx, the current President of the Royal College and to her counterparts in the US, France and possibly other countries to suggest that they combine to commission an international review.

But let me repeat: Hats off to you, Isabelle! I shall raise a glass to you this evening!

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.

Three role models of how to live a full life with facial burns

Role models are inspirational and we need more of them, people who have been through some trauma or major life event, and come out not just surviving but in some way uplifted by the experience. In the last week or two, as a man with facial burns, I have been inspired by three men who set a shining example to us all.

Yesterday, I had the privilege of meeting some of the Guinea Pigs, airman and tank crew whose extremely severe facial and hand burns had been treated by Sir Archibald McIndoe at East Grinstead after the Battle of Britain in 1940 and the five years of war that followed. The survivors are all in their later years now but retain a steely resilience and meet every year to continue the Club’s camaraderie at a lovely retreat on the South Coast.

I was there to talk to them about the legacy of McIndoe and the Guinea Pig Club in the run-up to the unveiling of a statue in East Grinstead in June commemorating the surgeon and his work: http://www.theguardian.com/artanddesign/2013/jan/01/plastic-surgery-archibald-mcindoe-memorial.

I walked and talked with 93-year-old Sandy Saunders who joked and chuckled like a man forty years younger! One phrase stood out: he said that he believed that many of the Guinea Pigs experienced an increase in “moral maturity” as a result of their ordeals. By which I think he meant a deeper understanding of human suffering and the needs of the disadvantaged.

His story is beautifully told in this link: http://www.meltontimes.co.uk/news/features/news-features/forever-grateful-for-pioneering-plastic-surgery-1-477124

Sadly, the number of Guinea Pigs dwindles each year and I was reminded too last week of the passing of Bob Boscawen, MP for Wells in Somerset for many years who died in January. I recall meeting him very briefly years ago and being impressed not just by his strongly expressed views but by his total lack of ego. He served his constituency, country and those around him selflessly.

http://www.telegraph.co.uk/news/obituaries/military-obituaries/army-obituaries/10557143/Robert-Boscawen-obituary.html

Last but by no means least, I was present last week at the unveiling of a portrait, chosen by the BBC’s One Show to hang in the National Portrait Gallery of one of today’s national treasures, Simon Weston, the Falklands War veteran. http://www.bbc.co.uk/news/entertainment-arts-26663152

Simon had not seen the portrait before the curtain was removed and was understandably very nervous about it. When the moment arrived, it revealed a superbly strong and respectful portrait by Nicky Philipps, capturing well his glinting eyes, gnarled hands and strength of being. We all watched as Simon inched forward, clearly very moved. His quiet appreciation spoke volumes… He was – and is – truly awe-struck at how people love and respect him. We could all feel his warmth and inspiration radiating around the room.

I salute these men and role models in all walks of life.

Research is definitely a crucial part of a better future but let’s not forget the present

Two big stories breaking in the media today are attracting my attention – a nice change from yesterday’s need to challenge another tiresome TV series title.

First, overnight news comes in of another incredible face transplant operation, this time on a man in the States, Richard Lee Norris, who had been injured 15 years ago in a shooting accident. The photographs released show the brilliance of today’s surgeons but they also remind me of an Italian man I was in hospital with back in the 70s who had to endure many brilliant conventional operations to repair a similar injury.

And almost simultaneously, news of a new major research programme into the causes and impact of cleft lip and palate. To quote the press release of The Cleft Collective: “cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year – but little is known about its causes, with opinion divided on best treatments.

So, in case anyone is in any doubt of my position (and Changing Faces’), let me say it again: medical science has a huge part to play in making a better future for people whose faces look unusual for any reason. Gaining the funding to do this, as The Healing Foundation and the Universities concerned have done for the cleft programme, is vital – congratulations and thanks to them…

Just as important for the future too is that conventional well-proven surgical and medical interventions are available and that includes skin camouflage which Changing Faces is now offering directly or in NHS clinics.

All of these options should be available to patients wherever they live – which is sadly certainly not the case in many many parts of the world. Much more advocacy is needed…

But there is something vital missing in this recipe because even if the transplantation research is successful, it will only be for a very few patients worldwide each year. Thousands, millions, will continue to have to live with their condition – their disfigurement – their birthmark, facial paralysis, their asymmetry, for the rest of their lives. And this is difficult.

All of them should have access to what could be described as ‘disfigurement life-skills training’ – a process by which patients (and their families) are helped to adjust to looking unusual in a world that prizes good looks so much and stigmatises not-such-good looks.

What has shocked me about Richard Norris’s story is the revelation that he spent 15 years living as a recluse. This should never happen to anyone. Sadly we hear every week that it does to far too many people… with a Bell’s Palsy or after cancer surgery or after burns or….

Frustratingly, Mr Norris and many others have not had access to the sort of empowerment that Changing Faces specialises in and advocates for – and is now available in some places. In particular, we know how crucial it is to people of all ages who have unusual looks to develop effective communication skills to manage all sorts of everyday social interactions. Going shopping, using public transport, meeting strangers, being in the playground – all these and many other everyday occurrences which most people take for granted can become nightmare scenarios. Here’s a pointer to the sort of help I have in mind.

Richard Norris’s remarkable surgery will make him less conspicuous in his everyday moments – let’s hope he finds the confidence to thrive in them too in the future.

Reflections on 2011 and looking to the year ahead…

2011 with all its economic woes has not been an easy year for many people but it has certainly been an important one in bringing more and more unusual-looking faces into the public eye in the UK and around the world. The positive messages that shine from these faces are successfully challenging the tired old stereotypes and assumptions – you know the ones I mean about ‘life is bound to be second rate looking like that’ or ‘you really need some more surgery’.

There have been some great stories broadcast on our screens – TV, iPad and computer – and I salute everyone who has has committed to conveying those crucial messages…  such as:

  • Jono Lancaster, a great guy with a condition called Treacher Collins syndrome who has already made some eye-opening and very pragmatic films about surgery and his childhood, http://jonolancaster.com/about-jono
  • JR Martinez, the American war veteran who won Dancing with the Stars, the US version of Strictly – he’s opened so many minds to the possibilities rather than the downsides of getting major facial scarring and is about to become a parent! http://www.knowjr.com/
  • Adam Pearson and Katie Piper for fronting up two very powerful Channel 4 TV programmes in early 2011 – ‘Beauty and the Beast: the Ugly Face of Prejudice’ and ‘Katie: My Beautiful Friends’. Both on at prime time, mainstream TV in the UK, these documentaries opened up the dilemmas and personal insights involved in looking unusual in today’s look-perfect society – more power to everyone who appeared in them…

And it was great to see the Time magazine photo of Bibi Aisha win the World Photo of the Year for 2010 too http://www.guardian.co.uk/artanddesign/2011/nov/20/photography-jodi-bieber-best-shot?INTCMP=SRCH

For me, 2011 has seriously tested the essential optimism that I have and you have to have to run a growing charity in austerity Britain but I am pleased to say that it has been considerably affirmed by the support of lots of new and long-standing donors – big thanks to you/them all!

And I have realised too how much my overall optimism has been nurtured by seeing hope in little everyday moments. Like the twinkle in the eye of the supermarket check-out assistant with an unusual face as I thanked her for my change – she was clearly living life to the full, unphased by and managing other people’s reactions with great aplomb. No need for our ‘Handling other people’s reactions’ guide http://admin.changingfaces.org.uk/downloads/Handling%20Reactions.pdf

Or the parent who calls to seek advice about their daughter’s face and prospects after she’s injured in a nasty car accident – and sounds reassured and strong after the call…

Looking ahead, 2012 will mark 20 years of Changing Faces – and we hope to make it a launch pad for the next chapter… a charity with a powerful local presence in the UK and an influential agent for change internationally. More anon…

A Happy and Hope-full New Year to all!

“But words will never hurt me” – oh yes they certainly can and do

One of the stupidest children’s rhymes I learned by rote in my childhood was:

“Sticks and stones

May break my bones

But words will never hurt me.”

I am so old that rote (mindless) learning was still in vogue but Wikipedia tells me that it goes back much before my childhood and may have misled generations of children:

Sticks and Stones is an English language children’s rhyme. It persuades the child victim of name-calling to ignore the taunt, to refrain from physical retaliation, and to remain calm and good-natured. The phrase is found at least as early as 1872, where it is presented as advice in Tappy’s Chicks: and Other Links Between Nature and Human Nature, by Mrs. George Cupples”.

What nonsense! It goes on:

“This sentiment is reflected in the common law of civil assault, which holds that mere name-calling does not give rise to a cause for action, while putting someone in fear of physical violence does.”

No wonder with laws like this we have allowed verbal abuse and harassment. My view – and I suspect there is good evidence out there (please send me it) – is that words hurt at least as severely and often in a more long-lasting way than physical abuse.

You only have to see the totally justifiable outrage to online abuse to see how just ‘little words’ can have nasty big impacts – and add more volume to the clamour for their banning. So this year’s Anti-Bullying Week theme, “Stop and think – words can hurt”, is very pertinent and well-timed.

This is what is reported to Changing Faces by hundreds of children and young people whose faces (or bodies) look unusual, different or supposedly do not match up to the ‘expected looks’ of today. Lucas’s story is just one of them – see his disclosure on our website and its advocacy on The One Show.

We call this ‘appearance-related bullying’ and I suspect it is extremely widespread – not just affecting people with disfigurements. The Anti-Bullying Alliance has some research that indicates that 9 out of 10 children aged 11 and 16 have either been verbally bullied or witnessed it happening to others in the past year.

This statistic suggests that today’s appearance-obsessed culture makes every child liable to be bullied at times but at other times to be the bully – and that goes for adults too. Appearance is very often the peg – the stigma – on which the verbal abuse is hooked. Red hair, fair hair, skin colour, freckles, weight (too much or too little), height (too much or too little), nose (too…) – the list goes on and most children will admit to either being picked upon or picking using some nasty ‘little words’.

Anti-Bullying Week challenges us all – teachers, journalists, comedians, marketeers and advertisers, parents, children and young people. Words can hurt, even very little ones.

325 pages is not enough but…

The World Report on Disability is impressive and will inform understanding and action to promote fairer and more accessible societies around the world for years to come.

Given the immense diversity of disability, it was not possible for the Report to describe all the health conditions that give rise to impairments, including those affecting the face nor how the interaction between people with these conditions and the social attitudinal and environmental barriers can “hinder their full and effective participation in society on an equal basis to others”. Nor could the proven interventions to remove these barriers and to empower individuals be referenced.

For example, recent evidence suggests that many of the 1.3 million people with a condition, injury or marking that affects their appearance in Britain are effectively denied opportunities to work. Over a third of the people recently surveyed said they had avoided applying for particular roles, because they feared others would have a negative reaction to their appearance.

In the spirit of the Report, Changing Faces is determined to continue working hard to ensure that public and employer attitudes towards people with unusual-looking faces are inclusive of all – and the good news here is that 35 major employers with a combined workforce over 1 million people have committed to embed ‘face equality’, to ensure that everyone is treated fairly and equally irrespective of their appearance.

But that’s not all. It is also of critical importance that people with an unusual appearance get the right information, support and social skills advice, at the right time. That’s in very short supply except through Changing Faces and some islands of good practice in the NHS. We will look to the new Clinical Commissioning Groups to ensure much improved access throughout the country.

Why face transplant research is important – and, more power to Oscar!

The Times carried a moving interview yesterday with the surgeon, Dr Joan Pere Barret, who carried out the world’s first full face transplant a year ago on ‘Oscar’. Some might say it was a pity it was not with Oscar himself but I fully respect his desire for privacy as he comes to terms with his completely new face – and all the risks associated.

Oscar’s injuries were from an accidental gun shot and if you look at the internet images of the damage, you can understand why “(for 6 years) he never went out because he was worried about people laughing at him” according to his surgeon.

The face transplant has undoubtedly given him a new lease of life in functional and aesthetic terms and you can understand why he decided its benefits outweighed the risks that the transplant may be rejected or that the heavy lifelong immuno-suppressant regime might have horrible side-effects or reduce his capacity to fight off infection or cancer and so reduce his life expectancy.

As more of these important transplants are proposed and conducted, I found myself reflecting on two aspects of this man’s case:

First about the similarity between the gunshot wounds that Oscar and another transplant patient, Connie Culp have endured and those of the first patients of modern-day facial reconstructive surgery, those injured in the trenches of the First World War.

Another book in the genre exploring those days, following Marc Dugain’s The Officer’s Ward (also a fine film), Pat Barker’s Life Class and The Crimson Portrait by Jody Shields, came out this week by Louisa Young called My Dear, I Wanted To Tell You. It takes the reader to the now extinct hospital, St Mary’s Sidcup where Harold Gillies performed so many facial surgeries.

But the second point is that many of those real men and women like the Italian guy with gunshot wounds I shared a ward with back in the 70s were supported and enabled, despite their less-than-perfect surgical repairs, to face their worlds again.

It grieves me to read that Oscar spent 6 years in isolation. I passionately believe that he – and many other patients worldwide who may be waiting for transplants (or not) – should be offered immediate help to enable them to emerge from that isolation – or better, never to go into it in the first place.

And, indeed, despite his new ‘improved’ appearance, Oscar (and the others) will still need help (I suspect) to learn how to manage (the fear of) the reactions of other people to him in all sorts of social encounters, small and big.

This is one reason why psycho-social professionals should be present as core and essential members in all clinical teams dealing with patients who experience facial conditions that affect their appearance be it after trauma, cancer, warfare, stroke, birth conditions or any other cause, even what might be thought of as ‘quite minor’ (but rarely is to the person whose face is affected). It is also where the cognitive and behavioural approach pioneered by Changing Faces and now in play in many hospitals is so crucial.

I described that approach in brief at the end of my blog on 16.3.11 but, to come back to Oscar, I would want him to have now – and to have had before – a social skills mentor who could help him understand how others are likely to experience meeting him and to devise and practise how he will – pro-actively and robustly – handle such reactions in the future.

More power to you, Oscar!

It can happen…

Good news comes in threes:

A team of four supporters of Changing Faces came to show us the slides of their Iron Man efforts – on a chilly day in early May – what heroes – and one of them swum without a hat and breast-stroke! They raised over £3,500 – see what they had to endure on our fund-raising pages. You could make it happen too!

I visited Banstead Place, the neuro-rehab centre for young people with severe brain damage run by the Queen Elizabeth’s Foundation for Disabled People – and met one of their clients who spoke with such power of his recovery over the last 18 months – he’s off to London next month to take up an independent life – it can happen…

One of our very first clients who has a severe facial disfigurement from a rare birth condition from the early ‘90s was back in touch – now a married man with a young son, he sounded so strong and empowered… It can happen…

Lastly, a question triggered by Jon Snow’s comments about the tabloids’ coverage of the election in his Westminster Media Forum lecture on 20.5.10. It is always good to read Jon because he is engaged on many matters not least in the ‘voluntary sector’ where I think he got his first job…

He’s quoted as saying that he believed Brown’s chances of re-election had been hampered by his appearance and disability: “The camera is very, very bad at handling people with one eye — that’s not an unkind thing to say, it’s an honest thing to say,” he said. The camera either loves you or it doesn’t and it has never loved Gordon Brown. It never managed to come to terms with the way Gordon Brown looked,” Snow added. “I think there’s a real danger the way you look is becoming a pretty important element of politics — which is a great pity.”

So, my question: who’s up for the next election to prove Jon wrong?!! It could happen…