Celebrating excellence in diversity practice

I was delighted to have been asked to speak and give the Lifetime Achievement Award at the Excellence in Diversity Awards in Leeds last week – what a great celebration it was!

I was honoured to speak at the Excellent in Diversity Awards last week

I was honoured to speak at the Excellent in Diversity Awards last week

Congratulations to everyone who was nominated – and the winners should be very proud… and especially to Karin Woodley, Chief Executive of Cambridge House who was given the Lifetime Achievement Award. I salute you!… and what a superb speech you made… “fighting for social justice is our moral obligation”…

Here’s what I said:

I am very pleased to hear that there have been so many excellent submissions for these Awards this year – and that the numbers are rising year on year. This message should go our loud and clear into our society which sadly, is too often characterised as narrow-minded and prejudiced. Not true. Respect, diversity and inclusion are thriving.

What tonight proves is that many many companies and organisations ‘get it’ – they understand the argument that diversity is good for their organisations and good for business – and they want to tap into the strength of the diversity of our society.

At the risk of preaching to the converted, let’s just revisit why investing in diversity can give organisations and companies a competitive edge and bottom-line advantage… three simple reasons:

  • because they can attract the most talented people to work for them
  • because they can retain staff who go through life-changing experiences
  • because they can attract customers who might not shop with them.

Simples.

I am glad to say that Changing Faces has worked with many companies across the UK to help them embed respect for ‘face equality’ and so enable them to attract people with unusual faces into their workplace, retain them if they go through a difficult experience – like a facial cancer or a Bell’s palsy – and ensure that people like me get excellent customer service… and aren’t asked ‘Cor, what happened to you?’ at the check-out desk. Yes it happens.

But we also run into the usual excuses – ‘we are dealing with gender equality this year’ and ‘we are fully trained on disability so don’t worry’. Sadly, it is often not until one of our users reports a bad incident that companies are impelled to do something.

Similarly, in 15 years of Dining with a Difference events, I have been amazed at how the top Boards of big companies frequently do not ‘get it’… They fail to see that disability, disfigurement and diversity are important strategic business issues not just annoying HR problems. Dining has lots of light-bulb moments for them…

I think there is one factor that marks out organisations and companies that ‘get it’ and those that don’t – they have a champion in a senior or high-level position who gets it and is determined to embed ‘it’ into the very fabric of the organisation.

A classic example was a major bank for which we ran a Dining event… we were told that many of the top Board were coming and were tasked with getting one of them as champion… at the end of the evening, the Finance Director got up to say ‘thank you’ and completely unprompted, announced that he’d put his hand up to be the company’s Disability Champion.

He kept his word and went on to become the Chief Executive. The whole company’s approach to disability – and diversity across the board too – changed.

So my message to you this evening is actually a challenge: I task you all with finding and nurturing the next generation of champions on diversity and inclusion in your organisations to take the embedding up to the next level.

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New year, old stereotypes

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

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

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

undateables

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Doing good

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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!

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.

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.

Why powwownow’s Zombie advert offends

Ten days ago I saw an advert on London’s transport network. Called ‘Avoid the Horror’, it featured a group of Zombies standing around a commuter on a packed tube train. Their faces display a variety of scars, bleeding mouths and exposed teeth, distorted by plastic masks.

It was a disquieting moment because I came face-to-face with this advert on King’s Cross station and the irony that this station was the scene of the worst station fire in the UK was also not lost on me – I got to know several of the survivors well in the years after that – and none of them found travelling on the Underground easy, silicon masks, scars and all.

Worse still, one of the ad’s Zombies closely resembled me and my face in the early months and years following the car fire in which I sustained 40% burns.

And the ad’s call to action to ‘Avoid the Horror’ is just as disturbing, reinforcing as it does the harmful association that people who wear masks as part of their treatment and who have burn scarring, are to be feared and avoided.

All this offence just to sell a conference call system.

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Changing Faces has campaigned against the offensive use of facial scarring, asymmetrical or missing features and facial masks to deliberately incite horror, fear and revulsion in popular culture for many years – our Leo film was widely seen in cinemas and online.

And we have also been raising awareness of – drawing attention to – our society’s tendency in everyday speech to describe scarring as ‘horrific’ and disfigurement as ‘terrifying’. It is the language of the horror genre – and should remain in that only.

The problem with such popular cultural references is that, for those of us who actually do have facial scars or whose faces are asymmetrical as a result of cancer, strokes or birth conditions – one on 111 people according to a recent study – the way that people react to such images and language regularly spills over into the way we are treated in everyday life. And that matters because it can make the playground a no-go area and public transport to be avoided at all costs.

I have endured being called Freddie Kreuger and Phantom by total strangers in front of family or members of the public. Some of our clients have been called Monster, Cyclops or Alien. These insults are usually accompanied by loud laughter by the perpetrators or obscene facial gestures or running away.

Such language and imagery, if left unchallenged, subtly encourages the public to view anyone with a disfigurement with fear or avoidance or caution and it makes the individual feel vulnerable, disempowered and unlikeable. The word ‘Horror’, for example, immediately makes a judgement on a person’s appearance.

We would like to see this offensive and disempowering wording replaced with factual words and phrases like ‘extensive scarring’, ‘a person with a disfigurement’ (not ‘the disfigured’), ‘has burn scars’ rather than ‘suffers from burn scars’ and we advise the media accordingly.

The fact is that people suffer as a result of the discriminatory behaviour they encounter from others because they look different.

It is also insensitive and disrespectful to the survivors who live with scarring from their injuries sustained in the King’s Cross fire and the Paddington rail crash, and continue to use London’s transport system, to urge fellow commuters to recoil in horror from anyone whose face bears a resemblance to those in the advert.

So what happened next?

On Friday 23rd January, I emailed Jason Downes, the General Manager of PowwowNow, the company responsible for the campaign, and explained our views. I was very encouraged that he called me very quickly, listened and took on board our concerns.

After two hours he called me again to say he agreed this particular ad might well be offensive although they had not in any way intended it to be, and that he had given instructions for the digital adverts to be removed with immediate effect. He also undertook to review the other locations where the zombie ads appeared (such as in London taxis) and come back to me in the following week.

I knew that the ad campaign had cost the company £3 million to mount so this was a big vote of support for campaign for face equality for which I thanked him – and offered to publicise his support. He preferred no publicity and I agreed that.

Last Tuesday he called me – and I assumed I would hear the outcome of his review. Instead, he informed me that the ad was to be reinstated following an internal review with the marketing department and their creative agency, Homeland. I was summarily informed by the Marketing Director in an email that

“After this robust review, we have decided to re-instate the advert as a reflection of our belief in the creative concept, its clear reference to the fantasy horror genre and the fact that we are in no way targeting or discriminating against people with facial disfigurement.

We wish to re-iterate that there is absolutely no intention to offend anyone at all. In fact, this campaign is built around expressing sympathy for all people at the mercy of public transport and providing practical solutions to make their lives easier.”

I immediately asked them to reconsider. Jason Downes’ final words to me were that the firm would not be changing their mind.  End of the conversation.

Quite an about turn.

How does a marketing department and a creative agency decide whether or not an advert has caused offence to people with burn injuries?  Did they run a focus group with people like me? Did they contact Katie Piper? Did they contact Simon Weston, our Patron and Falklands veteran, Pam Warren, the King’s Cross fire survivor, or the 7/7 survivors like Davinia Douglass who was photographed clutching a surgical burn mask as she was helped out of a station? As far as I know none of them have been contacted.

I am quite sure that this campaign will divide opinion even amongst people with disfigurements but Changing Faces does not accept that images of Zombies or other characters from the horror genre which so closely resemble people with burn injuries or other disfigurements are fair game for marketing departments and ad agencies to sell their products – especially when the public are asked to ‘avoid the horror’.

The Equality Act 2010 protects people with disfigurements from discrimination but that should be a last resort. Businesses should be tuned up to the modern expectations of their customers today not using worn-out and offensive images to sell their services.

Changing Faces is determined to challenge any example of prejudicial portrayal because we are not living in the Middle Ages nor in a fantasy land nor in a horror movie. We live in the UK and it is time that people with disfigurements were given the respect and dignity they deserve.

I urge you to email powwownow@changingfaces.org.uk and have your say.

 

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.

His is the face of a warrior for the human spirit

To be chosen as the subject of the first People’s Portrait was, as Simon Weston put it, a very humbling experience. But as he showed consistently throughout the beautifully crafted BBC film about the making of the portrait, he is a delightfully humble man.

But not in the way you might imagine I mean. Not passive or unctuous as in the mode of Dickens’ Uriah Heap. No. A strong humble. A servant with such a great commitment to helping people, inspiring people by his remarkable courage and frankness. He is not the classical hero figure rising up and charging towards a huge goal of his own imagining.

Simon Weston portrait

 

In one of the most telling of the conversations Fiona Bruce had with him, she asked him about his ambition… and he answered without the clarity of a determined fighter for a cause that “you’ll have to wait until I’m done” or words to that effect. He was non-specific because, I’d say having known him for nearly 25 years, that he is a man who ambitiously embraces many causes that uplift the human spirit, a warrior for good and justice. He doesn’t know what they are but when he finds them – or they him – he gives his all.

I’ve seen him on stages with young people as his audience but equally at home and compelling with the leaders of industry, commerce, medicine and the military. And he is writing children’s stories too.

All about uplifting as he was uplifted by his mother, his Welsh community and all the medics who worked on his face and body. It’s as if he is passing on the kindness and inspiration that he received to so many others.

His portrait is of a strong man with a chuckle of humour in the eye and one gnarled hand resting gently on the oak chair, the other unassumingly holding his medals. It is a fitting tribute indeed. The nation thanks you for painting him so powerfully, Nicky Phillips.