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!


Doing good


L-R Jayne Woodley of Oxfordshire Community Foundation, James Partridge, John Nickson

A great evening at the Oxford Union last week! So fascinating to be part of an ancient debating tradition that goes back to Gladstone who was President of the Union in 1830. I stood at the despatch box – opposing the motion – on the same boards as many giants of the political world and wider society of the past 185 years.

It was all done in a very formal process conducted under the watchful eye of Charles Vaughan, the President of the Oxford Union in his white tie and tails.

Those supporting the motion, James Bevan of CCLA, Nigel Mercer, President of the British Association of Plastic, Reconstructive and Aesthetic Surgeons and Sali Hughes, beauty writer and columnist constructed some formidable arguments to support the spending of money on ‘looking good’.

It has economic value, of course – providing employment for millions of people and much scope for charitable giving to medical research and other good causes. And no-one could dispute that the skills of plastic surgeons can improve a person’s looks… and I, for one, do not object to that provided the patient – or customer – has been given realistic information about the risks and benefits and has been told of other ways of gaining self-esteem.

The debate was really about the balance of society’s spending as Professor Danny Dorling and John Nickson and I tried to explain – and with the certainty that the state will be withdrawing from many areas of civil society in the years ahead, there is a real and urgent need to re-balance our priorities towards ‘doing good’.

There were many examples of how that spending could make a difference – but my one regret is that the nine-minute rule for all speakers prevented us elaborating on why such spending, giving or volunteering can make such a difference.

I am immensely proud of the work of Changing Faces’ staff, volunteers, ambassadors and many other people who have been transforming the lives and future prospects of anyone who experiences a disfigurement as I did years ago from severe burns at the age of 18 – and you can read about most significant impact in the last year on our website. My next blog will cover what we are seeking philanthropy for.

Lastly, a big thank you to my supporters for coming and cheering – and to the Oxfordshire Community Foundation for organising such a treat!

Events in Paris and London today

My heart and prayers go out to everyone in France who are trying to come to terms with last night’s ghastly events in Paris. We at Changing Faces are ready to do anything we can to help those injured and their families and we are with all people who stand for freedom and democracy.

Today, I will be in north London marking 40 years of an amazing service which has its roots in the aftermath of the fight against tyranny and barbarism in the Second World War, and so want to assert strongly that from these atrocities can come seeds of good.

The Skin Camouflage Service was created by the British Red Cross at the request of the Department of Health in 1975. In 1975, a nationwide survey of dermatologists highlighted the psychological and social effect of disfiguring skin conditions. The survey found that, while few skin problems are life-threatening, visible conditions – such as vitiligo, rosacea and scarring – could cause great distress and adversely affect almost every aspect of a person’s life.

Joyce Allsworth was appointed to develop the training – and Joyce was a pioneer in skin camouflage because she had been working with companies like Veil, Covermark, Max Factor and Elizabeth Arden in the 1950s and 60s, and they had been inspired, at least in part it is likely, by Sir Archibald McIndoe, the great plastic surgeon at Queen Victoria Hospital, East Grinstead. The patients he treated in the wake of the Battle of Britain and subsequent warfare came to be known as McIndoe’s Guinea Pigs.

Today the Skin Camouflage Service is an integral part of what Changing Faces offers to help people with any kind of disfigurement – from birthmarks, skin conditions, burns or scarring from accidents and violence – to gain self-confidence and self-esteem.


Around 5,000 people a year are referred to the service by dermatologists, GPs, plastic surgeons and others – and are advised by our highly-skilled Skin Camouflage Practitioners about the best cream to use – from 150 options on the NHS prescription list – according to their skin colour, type etc and how to apply it. They can then get a GP to prescribe the product – and the feedback we get is that this can be life-changing for many people. You can find out a lot more on our website.

My hope is that this little bit of history can light a tiny ember of hope into the gloom that last night’s events will inevitably produce.

Better to spend more on looking good than doing good?

On Tuesday 10 November, I spoke in a debate at the Oxford Union, organised by the Oxfordshire Community Foundation. This is the text of my speech.

The motion for debate: “This house believes that there is nothing wrong with spending more on looking good than doing good.”


Good evening, Mr President, Ladies and Gentlemen,

As you will observe, I have come dressed in a fine £150 suit, an elegant shirt from the Charles Tyrwhitt range, a tie out of the top drawer, shoes from Russell & Bromley, and hair styled by Toni and Guy. Total price £250. I enjoy wearing good-looking clothes – but I have no interest whatsoever in owning lots of them – and I’m hopeless at choosing which.

But that’s not important is it, compared to my face. Not pretty. Not looking good? Could do better? Severe burns at 18 made my life here as an Oxford student in the early 1970s extremely challenging. Hundreds of thousands of pounds of taxpayers’ money through the brilliant NHS were spent on getting my face to ‘look OK’.

But not good enough, of course. Because as prevailing orthodoxy would have it, without a good-looking face, I am doomed to three nasty effects: I won’t feel good inside, I won’t be liked by others and, with scars as good/bad as mine, I’m likely to live life in the shadows. I would be well-advised, you might say, to spend a lot more on ‘looking good’ – certainly much more than I do now! Not just on moisturisers but on major reconstructive and cosmetic surgery, perhaps even on a face transplant.

We live in a culture which has swallowed, hook line and sinker, the theory that ‘looking good’ brings big rewards. It also imposes a nasty stigma on people like me whose face doesn’t fit the norms of the day which is profoundly unfair.

In this culture, we are bombarded daily with slickly presented messages which tell us why spending massively on ‘looking good’ is not just good for our psyches but absolutely vital for them. If we don’t aspire to the spotless, wrinkle-free, age-less norms of appearance, our sex lives will be poorer, our self-esteem lower and our job and career prospects diminished.

The facts suggest that over 50,000 people spend £0.5bn on cosmetic surgery and that in all, £70bn each year is spent on ‘looking good’. That’s over £1,000 per person in the UK.

So on generous assumptions and including the cash-value of volunteering, £35bn a year is expended on – or given to – doing good. About half of what is spent on looking good. And by less than the half the population.

So why am I against spending of so much – and certainly any more – on looking good? For three reasons:

First, because I think the link between ‘looking good’ and being successful, feeling good and being loved is far more tenuous than is claimed and can be positively dangerous.

I work with many psychologists and they confirm that self-esteem and self-confidence are hard to acquire for most of us. Research suggests that parental support, academic achievement and the development of skills in sport, art, theatre and many other ways all combine with the quality of friendships, especially in adolescence to create our sense of self-worth. But some people’s self-esteem is heavily dependent on their looks.
Self-confidence too is gained by your ability to manage the many social encounters you have. That means your social skills have to be pro-active and your ability to deal with the judgements of others robust and resilient.

Do looks matter? Yes, of course they do… in the first five minutes of a new encounter, people do take a note of what you look like. But as Professor of Social Psychology, Michael Argyle of this great University showed years ago: when we meet someone, our first impressions are 54% determined by their overall appearance, dress etc, 34% by their gestures and body language, 8% by what they say and how they say it, and 4% by their face.

So looking good does matter but the idea that after those first five minutes, your facial looks – not your facial expressions or the quality of your eye contact – matter more than a little bit, I dispute. Sexual chemistry too is not about superficial face-value judgements – No, it’s a whole body, mind and spirit experience.

Incidentally, if you want a crazy sort of proof that there is not a very reliable correlation between ‘looking good’ and happiness, have a look at the Hollywood divorce statistics!

But psychologists also tell us that the over-zealous search for looking good has very dangerous unintended consequences. Some of those who strive to get a perfect body image do so at a severe cost to their own health. The epidemics of eating disorders, over-exercising, body dysmorphic disorder and self-harm are all obsessive behaviours designed to achieve or reacting to a frustrated search for an illusory perfect good-looking body. Research by Girlguiding found that one in five girls aged nine to 10 said the way they look makes them feel most upset, and 39% of girls say they experience demeaning comments about the way they look every week.

These are the unacceptable social costs of our ‘look good’ economy imposing massive costs on the health system most of which are preventable. The culture promoted by ultra-thin models and air-brushed faces is dangerous and needs countering. The ‘look good’ and ‘eat lots’ economy is unconstrained. Commercial pressures are hard to resist.

So there is definitely something ‘wrong’ with spending on ‘looking good.

Second, I dislike a culture which believes that looking good is not just a nice-to-have but also makes you morally good too. Research shows that many people believe it. Which is hard enough to swallow. But it’s the flipside which I detest.

Our culture perpetuates the nasty stigma that looking ‘not good’, with facial scars especially, means you are likely to be immoral, a villain, a weirdo. This lazy and nasty equation is seen not just in Bond and Elm Street films but in children’s online games too. The baddies in Moshi Monsters have names like Freakface and Fishlips who is characterised as a ‘one-eyed blob of badness’. Last week Children’s BBC gave Guy Fawkes a facial scar that – according to a Fawkes biographer – he never had.

Guy Fawkes with a mysterious facial scar - his leading biographer says there's no record of that scar.

Guy Fawkes with a mysterious facial scar – his leading biographer says there’s no record of that scar.

Encouraging spending on ‘looking good’ legitimates children in schools today being ridiculed because of their scars or birthmarks. We want our culture to respect ‘face equality’ just as race equality is coming to be.

But the third and strongest reason why I am against spending so much – and more and more – on looking good is that the monies could be put to so much better use.
Although when you watch BBC Children in Need this Friday and Comic Relief you might not think so, altruism, philanthropy and volunteering are all in retreat at a time when the need for them are rising.

With the state pulling back from so many areas of life and with more severe austerity cuts in the offing, charities are facing increasing pressures on their services – and there are so many causes to which people could give to or devote time to ‘doing good’.

Which can work miracles to people’s self-esteem and self-confidence. By volunteering to support elderly people in their neighbourhoods, getting a team together to raise sponsored money for a good cause, or finding out about how women survive after acid attacks in India or Britain and raising funds for their rehabilitation… All great ways to feel good… that you are doing something worthwhile.

So, Mr President, I strongly oppose the motion tonight: there is a great deal wrong with spending more on looking good than doing good – it is dangerous, allows stigma and prejudice, and is a waste of money. We are all the poorer because of our society’s excessive search to look good.

Revealing the Lion Faced Man

James is away … Henrietta Spalding, Head of Advocacy at Changing Faces, writes a guest blog

After a recent chance meeting with the mezzo opera singer, Alison Wells, last weekend I found myself going along to see a unique opera first at the Tête à Tête Opera Festival at Kings Place in London. It was a performance of an intriguing new work about Stefan Bibrowski, a man born in 1890 with a rare medical condition called hypertrichosis which resulted in his whole body being covered in long hair, giving him the appearance of a lion.

Stefan Bibrowski

Stefan Bibrowski

His life experience, as far as we know, was that he was treated as an outcast, rejected by his own family, being exhibited from an early age and becoming known as Lionel, the Lion-Faced Man and had spent many years working as a ‘side show performer’ including with Barnum and Bailey in the United States. I was intrigued: a historical experience of disfigurement that was to be explored through opera, and not only that but had been specifically composed to challenge the audience on how they would view someone who was unusual when they weren’t able to look away.

As a life-long opera fan, I had some degree of trepidation. Contemporary opera would not necessarily be my first choice and on arrival we were given viewfinder goggles to focus our visual gaze on the portrait of Stefan throughout and to prevent us from peeping out at what the director did not want us to see – namely the singer and the musicians. This was somewhat alternative compared to my previous experiences of the wonderful casts, staging and costumes of Puccini and Verdi et al and their fabulous music.

The performance was to last just 21 minutes.. It carefully presented the life of Stefan from his birth to his death, both what is known factually – remarkably little – and the many myths, aspersions and hearsay that have been promulgated around his short life from his father being mauled by a lion which his mother supposedly witnessed whilst pregnant, to his being created by ‘the devil’.

Through a powerful libretto and a dynamic range of voices that the singer as a solo act captured, underpinned by a tremendous score (and not nearly as scarily atonal as I had feared) accompanied by a piano trio, the performance sought to dispel many of those myths simply revealing the very few known biographical facts of Stephan’s life – his date and place of birth. And all the time as we were absorbed in the performance, our attention was focused on his picture and our thoughts. Throughout I was wondering how other members of the audience perhaps less familiar with unusual appearances were responding and what was going through their minds – what was the journey that they were going on in terms of how they saw him, and actually who he was? Did they land up like me realising that in actual fact very little of this gentleman was known at all.

But it seemed to me at least that this experience from over hundred years ago resonates with so many of the pressures that many Changing Faces clients face today in our looks-obsessed world – the assumptions and speculation that people make so often about people with distinctive appearances whether it be around their life prospects or their personal lives and the measures that people often take to fit in and be accepted. Stefan himself with none of the modern treatment options available to him went to the extreme lengths of actually burning off some of his hair.

It was an incredibly powerful depiction and I congratulate CN Lester and Hel Gurney, the composer / director and librettist respectively and Alison too for a brilliantly thought provoking spectacle, and I very much hope that there will be further opportunities to see this work.

Fundraising challenges: what they should be (painfully)

I fear the next target of the media’s current interest in charity fundraising may be ‘challenge events’ – you know what I mean: ‘get sponsored to join XYZ charity to run / cycle / walk / drive / negotiate the really tricky route from A to B’. Cynics can easily find fault: ‘nothing more than sight-seeing’, ‘just glorified holidays’…

Changing Faces wants none of it – and I suspect no charity does. But the whole sector sadly can be tarred sadly by a very few cowboys.

On Sunday, I took the train to Garsdale in the Yorkshire Dales to join Christine, one of the Changing Faces team, who has been demonstrating – and has done so brilliantly over the years – that fundraising challenges should be just that – seriously difficult undertakings which deserve people’s financial support and reward.

Christine and I in the driving rain!

Christine and I in the driving rain!

She has put herself through severe annual biking expeditions for the last seven years and has raised more than £15,000 for Changing Faces in the process – never easy trips with Land’s End to John O’Groats in three weeks just one of her many achievements!

This year, she concocted a ‘Hills of the North’ challenge cycling from Scarborough across the country to Ravenglass on the west coast of Cumbria, north to Carlisle, across the border to Kelso and then via Alnwick to Durham and finally via Kirkbymoorside back to Scarborough. 513 miles, she estimated.

And, partly because I have loved cycling since childhood and I’d never been to the Lake District, I volunteered to accompany here on a stage – and what a stage it turned out to be!

It rained most of Sunday afternoon, evening and night but, miraculously, we set off on Monday before 7.30am in the dry, with 65 miles ahead… a do-able, relatively gentle trundle, I imagined.

We went through Sedbergh (after a couple of very tough hills before Garsdale) and rode into Kendal just before 10am – 25 miles done, not a drop of rain, with a lovely downhill once we had managed to beat the brutal one-in-six hill up to the M6 motorway and the horrid two mile uphill drag from the motorway junction. My legs were starting to realise this was not going to be a Sunday afternoon doddle.

As we headed to Windermere, the rain started and became incessant by the time we reached Bowness, full of tourists in their pack-a-macs! And of course, I stood and quietly coo-ed at the Beatrix Potter shop… how much I’ve enjoyed tales of Mr McGregor over the years!

But then it was back in the saddle and up to Ambleside, not the quiet lake-hugging meander we’d imagined but a fast, busy road – and for cyclists, one with the unexpected hazard of loose grit flying up from car tyres. Not pleasant. Ambleside for lunch in the mist and drizzle – not quite what I’d imagined but a welcome chance to stand and stretch legs… and plan the last 25 miles.

Christine is very well-prepared – meticulous, even – in her route-planning as you’d expect after thousands of cycling-miles. And so I was shown the map – and the plan to go over something called Hardknott Pass… with two little > > symbols on the road, a white road and so off-piste… But the map had no contours so we had little warning.

And so we set off… What I didn’t know then was that we would climb 2,211ft and come down 2,385ft and that Google maps predicted 2hr 51 mins for the 22 miles – double what it would take on the flat! Nor did I know that that Hardknott Pass is the steepest road in England at one-in-three for a long, long way.

It was probably the most severe endurance test I have ever faced – worse than the London Marathon by a long way. It was a very long steep hill which, with bags of luggage on our bikes, we had no chance of cycling up (and even without the luggage…). We had to push up and up and up – and it was slippery, steep and interminable. And just to put us in our place, as we approached the top of the Wrynose Pass, a youngster probably inspired by Chris Froome came past us without stopping or walking… ‘more power to you’!

Cloud hindered our view, but not our determination

Cloud hindered our view, but not our determination

Getting over Wrynose, down into the valley and then up to Hardknott, was so very challenging with the rain drizzling and the wind whistling and no visibility. We were pleased to get there!

And then down the other side, such a steep road down, brakes screaming, cars skidding… but at least we were going downhill!

When we got to the bottom, the rain became torrential for the last seven miles – and our map didn’t warn us that there was another very severe one-in-four climb before we could finally freewheel into Ravenglass – and straight into the delightful Ratty Arms… shades of Beatrix Potter and what a refuge it was for two utterly drenched drowned rats!

Hardknott Pass’s history according to Wikipedia is:

The road was originally built by Romans around AD 110 to link the coastal fort and baths at Ravenglass with their garrisons at Ambleside and Kendal. The Romans called this road the Tenth Highway. The road fell into disrepair after the Romans left Britain in the early 5th century, although it remained as an unpaved packhorse route thereafter. The road was originally used entirely for military traffic, but following the Romans’ retreat from Britain was used to transport lead and agricultural goods. By the early Middle Ages, the road was known as the Waingate (“cart road”) or Wainscarth (“cart pass”): there is an 1138 record of a party of monks traversing it in an oxcart.

If you want to find out more, try this page.

So, getting to the point: fundraising challenges should be just that – serious challenges. Sponsorship monies recognise that – and charities benefit.

Christine at Ravenglass station

Christine at Ravenglass station

Christine is raising wonderful funds for Changing Faces. If you’d like to support her – us – please visit her JustGiving page.

Thank you very much!

‘Ugly’ is offensive and facist, and should be banned

I have been greatly saddened this week to see a word which I consider to be so offensive that it should be consigned to the dustbin of history, ‘ugly’, being used in two mainstream contexts.

First, repeating the howler it had first committed in 2011, the TV company Betty, has persuaded BBC3 to broadcast a documentary about disability hate crime with the nauseating title of The Ugly Face Of Disability Hate Crime.

The show as featured on the BBC Three website

The show as featured on the BBC Three website

It may be a very good programme – we will see tonight. Changing Faces has certainly contributed significantly to make it so. But with Adam Pearson, one of our Face Equality champions as the lead – a man with a condition known as neurofibromatosis – its title is guaranteed to perpetuate the stereotype that it’s okay to refer, albeit obliquely, to Adam’s face – and that of anyone with outstanding and distinctive facial features – as ugly.

It’s not the first time this company has used this tacky title trick either. Four years ago, we protested to no avail when Channel 4 agreed to run a series called ‘Beauty and the Beast: the Ugly Face of Prejudice’ again fronted by Adam – which exposed facial prejudice in many parts of British society.

The company and Channel 4 claimed then that having a prime time TV programme pointing out this prejudice would be helpful and help to eliminate it. So by 2015, say, there’d be no more facist – that’s facist, not fascist – discrimination? [NB: I’ve just added facist to my Microsoft Word dictionary.]

I doubted that logic then – see this blog – and I doubt it even more so today. It is very disappointing that BBC3 has fallen into the same trap.

Second, I was sent a notification of one of my favourite portrait exhibitions of the year, the BP Portrait Award at the National Portrait Gallery. But the notification I received – I’m sure not deliberately – featured a picture of Robert Hoge whom I only know about and have never met – a man who has helped to put facial disfigurement on the Australian radar.

The artist has captured Robert very well, I suspect, in a serious, thoughtful pose – but, yes, he’s named it ‘Ugly – Portrait of Robert Hoge’. Here’s what I was sent.

Both of these instances are doubly distressing in my view because the use of the word ‘ugly’ has clearly received the tacit or perhaps even explicit acceptance of Adam and Robert, two men who should not have to belittle themselves in such a demeaning way to get ‘on the programme’ or ‘in the picture’.

Ugly is an adjective which connotes unattractive and displeasing to the eye. Nothing about a human face should be considered like that. Faces are what they are: a human being’s canvas for the world to see – and our respect for that person should override any aesthetic judgement.

My view is that it is time for those of us who wish to see a society which truly respects face equality (like race equality) to define ugly as an offensive word which is not to be condoned any longer, and we should begin to insert asterisks to demonstrate its unpleasantness: the ‘n-word’ is rightly considered beyond the pale and accepted as racist, u**y is facist and it’s time it was no longer used to describe human beings.

Let’s outlaw it.

  • The U**y Face of Disability Hate Crime; BBC Three, 2100 on Thursday 23 July

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:


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…

How now, Powwownow?

It’s now more than a week since Changing Faces went public with our campaign against Powwownow’s ‘Avoid the Horror’ campaign which, in one specific advert, used images that were – for me and many of our supporters – just too close for comfort in depicting ‘zombies’ which actually resembled people with burns scarring wearing compression masks as is common in burns treatment.

IMG_4843As I said in my original post last Monday, we knew that our objection would be controversial. We knew that some people would see nothing wrong in the advert, and wonder what all the fuss is about. But what became clear over the course of the last week is that whilst it did divide opinion, the majority of our supporters saw the offence and recognised that Powwownow had got it wrong.

Here are a selection of the comments we have received to be sent on to Powwownow:

I was diagnosed with cancer December 2013 and had to have major surgery and as a result I have facial scars and an eye removed. I’ve also had another 6 operations since and have rarely left the house, except for hospital appointments, since because I am scared of public reactions.

I had to write to let you know that I found you advertisement campaign sole destroying , nasty, ignorant, offensive and insensitive and I would imagine many other people in my shoes would too. I want you to know that your words, Avoid the horror’ in particular makes me upset., in fact I’m crying now just reading it again. Those words linked with those pictures are so damaging.

Ignorance like this these days with that imagery and language is inexcusable. You may think it’s not discriminatory to people with facial disfigurements but as one of them I’m telling you , you are wrong. You should have done more research. – Lorraine

I was so pleased to hear of Powwownow’s initial response regarding the campaign ‘avoid the horror’. I thought at last a company that listens and acts when it is found to be causing offence. I was hugely disappointed when the company then reinstated the ad. I am truly sad that principles are so easily discarded in favour of profit. – Sandra

Society seems to target facial disfigurement or difference all too often, people become the subject of ridicule and fear because of campaigns like this which encourage the general public to make fun of difference or disability. The people who designed this campaign should walk a day in the shoes of someone who looks different. They should have to face the stares, the comments and bullying that is lived with because the difference is so easily on show on their face.

What makes it worse is that wearing a mask is a medical treatment and is something which probably has a lot of discomfort with it. Would they mock people so readily who were undergoing any other medical treatment?

Yes – the campaign might be meant to be zombies but the people in the picture aren’t zombies – they are just wearing a mask.

This campaign is a form of bullying and will now create targets out of people who have to wear masks. It’s a means of inciting hatred and encouraging anti social behaviour. What a terrible idea.

My child has a difference in appearance that has meant we have not been able to go to soft play areas because of other children calling him a zombie. This campaign doesn’t show my son that his future has any hope that we are going into a brighter future. How will he become independent and self confident with images like this facing him? – Vicky

I sincerely urge you to reconsider using this Zombie advert. Please please try to have some empathy with the people you are hurting.

The abuse that person with facial disfigurement often receive in public transport areas can already be quiet horrendous – do you really want to be part of making this situation worse, arguably even unbearable?

It takes courage to do take a stand and do the right thing. – Mary

I am unimpressed by your advert showing people with wounds on their face labelled as ‘horror’. At first I wondered whether I was justified to feel offended – and I do wonder still – but I can’t help but feel it is an insensitive advert, which I know from reading Changing Faces’ Facebook comments is deeply offensive to some people. Of course you’re perfectly entitled to display these images but perhaps you’d like to read some of the comments and then decide whether you’re making the right decision to continue the advert? Or ask employees of yours living with a disfigurement how they find the advert? It is a simple case of humans being kind to other humans, empathising, respecting and saying sorry for the mistake by making a change. – Kathryn

I am writing to express my sadness and disappointment at the decision not to withdraw the poster campaign. I am the parent of a child who was born with a cleft lip and palate. The media and film industry too often use a facial flaw or defect to signify a ‘flawed’ or defective personality. The villain in Disney’s Lone Ranger was given a cleft lip and broken nose, he wasn’t even a typical Disney Baddie, he was a sadistic cannibal to boot. If you don’t personally know someone who has been affected by a facial abnormality you may not realise the distress and emotional pain the #Avoidthehorror campaign is causing. It’s time for the media to stop targetting the vulnerable for shock value. – Karina

A very nasty campaign. Changing Faces’ robust response is very powerful, and I commend them for it in the face of what must have been great disappointment. Powwownow’s shameful marketing campaign is incompetent, ignorant, insulting and intolerant. Maybe one day they’ll join the real world and discover the best in people, but instead – as Changing Faces have indicated – they have succeeded in continuing to make the public sphere a hostile place for anyone who is visibly disfigured. What a contrast to the opposing story in the North East where £200K was raised for a victim of a mugging. PowwowNow and Homeland have rejected an opportunity to do the right thing, and for that they can be pitied. They will never have the strength of character that Changing Faces epitomises. – June

I have to travel to Waterloo for work every day and this morning i was ‘welcomed’ by a vast selection of awful recurring images on the advertising boards all over the westbound platform. Monday mornings are bad enough without feeling disrespected before I even get to work. I think it is disgraceful that such a large company have not only been allowed to advertise like this, but have also now developed their project by releasing even more discriminating images. – Jenni

I find this really, really offensive. Is Powwownow inferring that because I – and many others – have been burned in an accident and have had to wear pressure masks or garments for 18 months afterwards, we are to be treated as “HORRORS”?. Well that is not my view and I now know one company which I believe is horrific and should be avoided. Please share/like and let powwownow know that you are horrified by their view of disfigurement. This is really sad. – Richard

I think it’s the way in which the zombies are depicted here that is the issue – the masks that the zombies are.wearing are very similar to masks that burns survivors wear so if my son or daughter or indeed myself wore a mask like that and saw this advert I’d be a bit shocked! I think it is a little bit insensitive and more research should have been done by the creative team before the final advert went out. – Rachael

Unnecessary powwownow.. if you offend a human being and especially a person who might have suffered trauma or pain in their life journey ..why would you inflict this insult? This is foolish and a business faux pas never mind a moral one. Get your community head on..ditch the arrogance and face up to your social responsibility. Don’t make beautiful human beings feel alienated. – Colleen

This is quite shocking really. So incredibly insensitive. I would expect more from companies in this day and age, it’s downright disrespectful, such a shame. – Laura

What the hell – they’re wearing the masks to aid healing of a severe facial injury, you wouldn’t taunt someone for wearing a cast on a broken arm! These poor people are going through a horrible time and this is what people decide to say about them? How can people be so callous and immature?! Would they refuse to wear one of these masks if they had such a bad injury to their face? Who are these people?!?! – Amber

It’s clear from these comments that many of our supporters found the advert offensive, distasteful and for some it was so upsetting that it made them cry. To provoke such a reaction must surely render any advertisement unacceptable.

Doubtless some people will agree with Powwownow and say that the adverts ‘just’ depict zombies. But as Vicky’s comments show, it’s ‘just’ such depictions of ‘zombies’ that lead to playground taunts, bullying and, for others, abuse in the workplace, the pub, whilst out shopping, and on public transport.

Our rationale in standing up to the advert was that it caused offence. Becki said it best on Facebook: “Changing Faces is an organisation that exists to support people with facial differences. It is therefore totally appropriate for them to come out fighting on their behalf. It is ok if not everyone is offended or upset by these adverts but if just ONE person who lives with this daily IS, then good for Changing Faces for stepping up. They are giving people a voice.”

We await the verdict of the Advertising Standards Authority in response to our complaint about this advert, but we are confident that the stories and experiences of our supporters, outlined so eloquently above, prove the point: Powwownow’s advert was offensive, disrespectful, distasteful and likely to legitimise bullying amongst some young people. The fact that they agreed, and then back-tracked, shows that the rights of people with disfigurement still lose out to aggressive marketing campaigns.

Companies and the advertising agencies they employ must start to listen to the voices of real people like Becki who, like Changing Faces, will no longer stand for such facial prejudice.