#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’.

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.

The birth of modern plastic surgery and the face equality campaign

The centenary of the cataclysmic Great War is happening all around us but is liable to be drowned out by last week’s European events. Let me call for a moment of reflection.

We say on Armistice Day every November ‘we will remember them’ and we should this week. Lest we forget. On Friday 1st July, I will remember the sacrifices of the men and women of the Great War, 1914-18, who gave their lives or were injured in that dreadful event.

One hundred years ago on 1st July, the Battle of the Somme began. There were 60,000 casualties that first day – yes, 60,000 – and by the time the Battle was called off in November, the allies had gained six miles of territory with 420,000 British casualties, 200,000 French and 500,000 Germans. One eye witness account captures the horror on this site.

The reason why this matters to me is that 1st July 1916 is held by those in the dressing stations and hospitals behind the lines on both sides as being the birth day of modern facial and plastic surgery. Never before had so many men been seen with severe facial injuries – and thanks to methods that had evolved in the previous two years of war, never had so many men survived. Governments on both sides were forced to bring together the most ingenious surgeons of the day to tackle the challenge.

On the allied side in the early days of the War, the British New Zealander ENT surgeon, Harold Gillies, worked with Charles Auguste Valadier, a French-American dentist and the French surgeon, Hippolyte Morrestin, to invent new techniques for closing facial wounds and treating the loss of skin and tissue. But as soon as the Somme’s casualty toll became obvious, Gillies was given a whole hospital – Queen Mary’s in Sidcup – to find ways to help the thousands of facially-injured soldiers arriving back in Britain.

Queen Mary's Hospital Sidcup, with Harold Gillies on the right

Queen Mary’s Hospital Sidcup, with Harold Gillies on the right

He assembled an exemplary multi-disciplinary and international team – perhaps better, ‘force’ – and every one of us who have received facial surgery since then owe Gillies and that team a huge vote of gratitude. Gillies’ seminal textbook, Plastic Surgery of the Face, published in 1920 remains a masterpiece.

And it gets even more personal for me because in the Second World War, Gillies again was at the forefront of treating the many casualties and this time created a ‘force’ at Rooksdown House in Basingstoke. My surgeon, Jim Evans, was trained by Gillies there – and when the war ended, the whole team moved, with their archives, to Queen Mary’s Hospital, Roehampton, where I was treated in 1970-75. My last operation in 1974 was a Gillies pedicle, the longest ever attempted according to Jim Evans, from my back to my chin. I wear it with pride.

And it was in the basement of that hospital, next to the medical photographer’s studio which I recall very well, that the archives were found in 1993 and thanks to the brilliant work of Andrew Bamji, have been created into a beautiful archive.

I will also celebrate the work of Henry Tonks, the war artist in Gillies’ work. I count myself privileged to have seen the originals in the vaults of the Royal College of Surgeons in England in connection with a film about Simon Weston’s portrait going on display at the National Portrait Gallery.

But perhaps most of all, my sombre reflection will be about the lives of the men who, after the horrors of the Somme, then went through the pain and agony of those early surgical experiments and then had the strength to try to get back into civvy street. They are the real pioneers, the first generation working for face equality in all walks of life, for respect and fair treatment.

Lest we forget. RIP.

PS: For interest: many books have tried to capture this human experience like Marc Dugain’s The Officer’s Ward (also a fine film), Pat Barker’s Life Class trilogy, The Crimson Portrait by Jody Shields and Louisa Young’s My Dear, I Wanted To Tell You.

Changing Faces sticks to its prinicples

Changing Faces has recently submitted its response to the review of cleft lip and palate surgical care in Scotland. It has been criticised in a few blogs and Facebook posts by some parents for supporting the expert Review Group’s recommendation that there should be a single surgical team based at the new Royal Children’s Hospital in Glasgow in the future rather than two teams as now (one in Glasgow, one in Edinburgh).

This has been a challenging process and it is important that I, as Chief Executive of Changing Faces, explain why the charity has taken this position – and it is the organisation’s view reached after much deliberation and not simply the view held by one or two members of staff.

Our full response is here and should be read in full because it explains that the basis for the decision was our over-riding interest in promoting the best future health care, surgical and psycho-social, for all children with clefts and their families across Scotland.

We reached the conclusion we did after a thorough analysis and careful consideration of all the paperwork in the public domain including all the options appraisal and outcomes papers (see this document and also this document). We also listened to the public meetings and to the views of people who’ve contacted us.

As Chief Executive, I took a close interest in such a contentious issue and subjected the position developed by our Scotland Manager and health policy team to challenge and scrutiny. The position we reached was explicit and unanimous.

We want to be clear on three points:

Firstly, we are very aware of the strong views of individuals and families who have been superbly served by the Edinburgh surgical team over the last decade. They are understandably concerned that they may lose the surgical team’s service and all that goes with it. That is not what the single site proposal would produce because the intention is to bring all the three surgeons and their entire surgical teams together. In doing so, all children in Scotland would have access to the best surgery possible.

We also made it clear that we do not think anything else should change: the integrated and psycho-social care that wraps around patients with clefts and their families is absolutely fundamental. “At present there are eight multi-disciplinary team clinics across Scotland. We believe there should be a cast-iron guarantee in the final report which commits to keeping them as they are…. We also would like to see a commitment to regular follow up psychosocial assessment at all levels of patient care.”

Secondly, our health policy team has submitted evidence to many such consultations over the last twenty years including the original Clinical Standards Advisory Group (CSAG)’s review of cleft care back in the early 1990s. In almost all cases, our view after careful assessment of the evidence and arguments has been that children and adults with relatively rare conditions are better served by and obtain better results from larger teams of surgeons working together, learning from and supporting each other, conducting many operations rather than only a few.

Current surgical opinion is also strongly in favour of the concentration of skills and resources for best outcomes, accessibility and patient safety. We accept that view in this case as bringing the chance that the best surgical expertise will be nurtured, shared and developed for the benefit of all children in Scotland. The two Royal Colleges in Scotland have confirmed that they too accept the expert Review Group’s view (see, for example, this from the Royal College of Surgeons of Edinburgh).

Thirdly, Changing Faces is not ‘playing politics’ in any way here but acting dispassionately in the best interests of patients, present and future, across the whole of Scotland.

The charity rejects completely claims that it has been corrupted or that it is in the pocket of the Scottish Government or has been ‘bought’ by the Review Group. None of these accusations have any truth to them whatsoever.

We also strongly refute the suggestion that our Scotland Manager stated at either of the public consultation meetings that he was in favour of the single site proposal or that he said that he had already made up his or Changing Faces’ mind. He listened carefully to the views expressed at those meetings in his capacity both as our Scotland Manager and as a member of the Stakeholder Consultation Group. This also consisted of Gillian McCarthy, CLAPA, and Emma Ashman, Scottish Health Council. All remained neutral throughout the meetings.

Lastly, should the proposals be accepted by the Scottish Government, Changing Faces urges the Edinburgh surgical team to be open to sharing and developing their great expertise within the context of a single site surgical team in the future for the benefit of all children and young people with clefts in Scotland. Whatever the decision, that benefit will be our focus.

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!

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.