#WhereIsDisfigurement? Two classic examples

I fear we at Changing Faces* are going to have say this loudly and regularly:

Barely a month passes without a government department, executive agency, public body, company or charity publishing a report or new policy on equality, human rights and/or disability and yet the issue of disfigurement is often ignored, excluded or otherwise forgotten.

Why is this neglect important?

Because people with disfigurements** have a right to expect better.

They are protected from discrimination under the Equality Act 2010 ‘as if they had a disability’ and have rights for awareness of their issues and how to address them to be reported upon in the Public Sector Duty obligations of public sector bodies.

Over 1.3m children, young people and adults in the UK have a disfigurement, including 569,000 (1 in 111 of the population) with significant facial disfigurements – significant psychologically and socially (psycho-socially). Although modern medicine and surgery is increasingly sophisticated, it can rarely remove a disfigurement completely.

Every one of these people has to live in our looks-obsessed society with a face or body that attracts intrusive attention, judgement and the stigma our culture attaches to disfigurement. Because of this, they are vulnerable to low self-esteem, to being isolated and friendless, facing teasing, ridicule and staring in public, low expectations in school and at work, problems getting work, and stereotyping in the media. Just because of the way they look. It’s not just at all.

So ensuring schools, companies and politicians understand disfigurement matters very much.

They also need to recognise that making ‘reasonable adjustments’ in schools, businesses or public bodies is not a matter of ensuring good physical access or smart IT as for many disabled people. No, people with disfigurements – like those with mental health issues – need attitudinal adjustments.

And that’s not a quick fix because independent research indicates that nine out of ten members of the public find it very hard to attach positive attributes to people with facial disfigurements. And that statistic remains the same irrespective of educational status and age.

Everyone in our society has been conditioned – unwittingly – by the stereotyping around disfigurement: it’s a passport to a second-rate life in our good looks = success’ society; many people with disfigurements are odd, villains, nasty and to be avoided; and anyway, modern plastic/cosmetic surgery can fix it. All fallacious but all the reasons why face-ism exists.

Here are two classic recent examples of disfigurement being ignored.

First, at the start of December, the Shaw Trust published its annual ‘Power 100 List 2017, a celebration of Britain’s most influential disabled people‘ – slightly strange that it’s dated 2017 but maybe a clever marking tag – and I was keen to see whether some leading people with disfigurements had got a mention.

I found Katie Piper, the acid survivor and celebrity – good. But no place for Simon Weston. I searched for Adam Pearson, now a star of the TV screen with his documentaries for Channel 4 and the BBC. And Bill Cooper, Managing Director and Global Head of Insurance and Specialist Finance at Lloyds Banking Group who carries a great birthmark which he has used to transform the culture in that company. And Winnie Harlow, a woman with vitiligo who is brilliantly challenging the fashion and cosmetic world. But none of them featured.

#WhereIsDisfigurement

Second, we were pleased to see the eagerly-awaited report of the All Party Parliamentary Group on Disability (APPGD) on the infamous Disability Employment Gap – but I was absolutely staggered to see that some of the main organisations enabling employers to take disability seriously were not consulted: the Business Disability Forum and AbilityNet come to mind – and just three companies and one local authority. Five academics have given their name to this report. They ought to be ashamed at the paltry research that has gone into it.

We gave evidence to the enquiry team about the problems that people with disfigurements face in getting work or retaining their posts, the existence of implicit bias and how we provide training on how employers can and should tackle it – and take our advice on recruitment and retention. But not a word in the report – even though we (and many other disability organisations) would argue that the institutionalised disabilism that the report does mention has bias, stereotyping and prejudice at its root.

What should be done?

Ultimately, Changing Faces believes that people with disfigurements will only get effective rights when disfigurement is listed as a separate protected characteristic in Britain’s equality legislation. That will take some time to bring about but we are pleased to say that the Equality & Human Rights Commission (EHRC) is starting to wake up to the problem.

Right now, though, please, we ask everyone to be our eyes and ears so that we pick up on opportunities to further this campaign.

 

Notes

* Changing Faces is here to help people who have a disfigurement find a way to live the lives they want. We are caring campaigners – empowering people to conquer fears, take the first steps and ultimately take control and realise their dreams. And we challenge prejudice, respect differences and speak to a world that needs to change. Please see: http://www.changingfaces.org.uk

** We use ‘disfigurement’ as a collective word for all the conditions, scars or marks that make a person’s face or body look unusual. Many people, understandably, prefer to specify their condition, for example, ‘I have a birthmark’.

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Celebrating the springboard donation to Changing Faces

Greville and Lisa Mitchell

Greville and Lisa Mitchell

Twenty-five years ago this week, on Friday 25th October 1991, I received the very first donation to Changing Faces – and it was a full nine months before the charity was officially ‘launched’ and was therefore of even more significance.

So I was delighted last week to be invited to have coffee with Greville and Lisa Mitchell in their lovely house overlooking Perelle Bay in Guernsey – and to thank them yet again for their immense generosity. Their donation was the trigger, it gave me the confidence – and they didn’t stop there either!

Greville Mitchell is a very well-respected local philanthropist in Guernsey – he’d put up the initial funding for the island’s hospice. I didn’t know him but managed to get an introduction and met him one afternoon in early October 1991.

I explained what I was thinking of doing – creating a charity to fill the void in psycho-social, confidence-building care for people with disfigurements from any cause, to advocate that such care should be a routine of health care after burns, cleft lip and palate, facial cancer or paralysis or skin conditions, and to challenge the prevailing and pervasively negative public attitudes around disfigurement.

A big agenda, I admitted, but it need to be tackled. I asked him if he would advise me on whether he thought it a viable and worthwhile idea. He agreed to review my ‘business plan’ (I shuddered at its paucity) and said he would get back to me.

A few days later, I had just been out spreading slurry on a local field fully-clad in protective oil skins and stopped at the end of our farm track to rescue the post from the mail box. I climbed back into the tractor cab and opened one of the letters, the writing of which I didn’t recognise. It was from Greville: “thank you for your book and your plan… I think it is a very good and exciting idea and needs doing… and here’s £5,000 to get it going… and I’ll go on supporting you if you do get it up and running.”

And so the Andrew Mitchell Christian Charitable Trust became our very first donor – and Greville has been good to his word like the great Christian gentlemen he is. He has given 25 gifts to a total value of £146,000.

But that very first donation was the most important. From a complete outsider, he recognised the need I was talking about and was prepared to put money behind it. That is how charities like Changing Faces start and that is what keeps us going forward:

Because people believe as Greville did – and does – that it “needs doing”.

What is more, I could write to other prospective donors and say “I had already received substantial support”!

Greville and Lisa: you spring-boarded so much – mega thanks!

Kathy Lacy – a woman of huge empathy who inspired thousands

It was with great sadness that I heard of Kathy Lacy’s death last Thursday after she’d been through a series of very difficult health problems. I’d seen her a fortnight ago and she was clearly in agony so it was a mercy.

I first met Kathy (pictured above) at Victoria Station in July 1992 three months after Changing Faces was launched. She had been recommended by a mutual friend who knew I was looking for someone to help me deal with all the enquiries I was receiving and run the workshops we were inventing too.

Kathy was working in health education in London at that time and had, according to my friend, completely mastered her condition – a severe form of Nf1, Neurofibromatosis, which meant that she had what she sometimes referred to as ‘lumps and bumps’ all over her face and body.

Victoria Station was a good choice of venue as it turned out because I could see instantly as I approached her in the coffee shop that she was completely unphased by the reactions of those around her. She greeted me with all the warmth and interest that I soon came to realise were her hallmarks. Despite all the intrusions and bad times she had been through, she had evolved the most wonderful way of seeing the very best in people – and of showing that very directly.

It didn’t take me more than a few minutes to realise that I could work with her – and indeed that I wanted her on the team – as my very first freelancer – and she was soon to become a full-time member of staff, a rock for nearly a decade in what we offered to people and families who contacted us for help. They were looking for someone who understood what they were going through – after the birth of their child, or with their skin condition or facial palsy, or after facial cancer surgery, burns or a car accident. Kathy understood instinctively and intuitively.

Her philosophy of life was a simple one summed up in one of her favourite epithets – and she had lots of them! “The past is gone, the future is yet to come, the present is truly a gift to be enjoyed”… and she passed that on to everyone by osmosis. And her osmosis was extraordinary. People have told me that Kathy could convey her empathy down the phone line like no-one else. Her person-centred approach – she trained with Metanoia and NLP – enabled her to reach people even those in the most serious unhappiness and isolation.

In the first few years, we ran lots of workshops together – and then Kathy ran many on her own. They were always stimulating events bringing people with disfigurements of all kinds together and enabling them, after two intense days, to live life more fully and confidently. People regularly wrote (no email in those days) afterwards thanking her for her kindness and empowerment. She was great one for saying to clients that you have to have tenacity – she had it in spades. Another of her mottos was “there’s no such thing as failure, only feedback” and anyone who had a setback – or experienced the kind of intrusions that she knew only too well – was just unable to resist her certainty! Learn from your experience and move on.

In her nine years at Changing Faces before she retired, Kathy touched the lives of many people – and left a lasting legacy in the Client Service we now have which she was so rightly proud to have pioneered.

Kathy, rest in peace, you earned it.

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.

Fashion, faces and the future

Last week I had the pleasure of meeting Professor Danka Tamburic, Professor in Cosmetic Science at the London College of Fashion because she is hosting a fascinating Symposium in April, Skin: The ultimate interface, to which I will be contributing with Henrietta Spalding. Our title is ‘Changing Faces: from stigma to face equality’.

The meeting was brought about through the good offices of my old friend, Emeritus Professor Terence Ryan. I met him more than twenty years ago when he was a professor at Oxford University and a highly-respected consultant dermatologist – and there we were discussing skin and the stigma of disfigurement in a fashion college! But no ordinary fashion college – one which has laboratories where students and researchers study the chemistry of skin creams and used to have the Rev Joanna Jepson as its first Rector of Fashion.

Joanna – with whom I have not always agreed! – has written a powerful book called Fashion, Faith and Fig-Leaves: a Memoir, in which she describes her journey in faith and how her rare facial condition affected so much of her adolescence. She became isolated and introverted – and then she risked major maxilla-facial surgery on her chin, teeth and mouth. Which, in her case, was transformational.

Henrietta has also written a brilliant book about her facial paralysis with Professor Jonathan Cole, a neurophysiologist, called The Invisible Smile about life with Moebius Syndrome. It’s a condition which no amount of surgery can change significantly.

It was 45 years on Friday since I looked in the mirror for the first time after fire had severely damaged my face. I knew in that mirror moment that I was a marked man – stigmatised by my scars and disfigurement. Five years of brilliant reconstructive surgery produced my unusual face as it is today. As good as it could get. Contrary to popular belief – myth – that’s it.

Last week too, I read a fascinating article about ‘How long until we can print human faces in the lab?’. The idea that your own stem cells could be used to manufacture a new face if your face is damaged as mine was is still decades away, I suspect, but it might be possible.

Until that happens and such treatment is widely available – and of course, it will not touch many other causes, like facial paralysis – we must tackle the stigma of disfigurement every day in every setting. That’s what Henrietta and I will be saying – and that’s what the campaign for face equality is all about. Join us!

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.

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!

‘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:

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.