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.

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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.

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!

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.

 

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.

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

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

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

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

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

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

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

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

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

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

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

“The variety of faces has increased considerably” in Lego!

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Did you know that there are now 6,000 mini-figures in the Lego world?! And apparently, according to an academic in New Zealand, Dr Christoph Bartneck, who has looked at every one of them, the number (or did he mean the percentage) of ‘happy faces’ is diminishing…

You could argue that this possibly reflects the real world, sadly, because conflict, anger and anxiety are increasingly all around all of us daily across the planet – or at least, having the 24-7 news streaming at us suggests this is the case.

Two things stood out for me from the reports I’ve seen of Dr Bartneck’s study: first, I had not appreciated that Lego’s original figures which my children played for hours with had only positive-looking faces. Did those expressions influence their play? I rather suspect they did because war games and violence were hard to imagine if playing Lego. Will future children’s development be impacted? Probably yes and for the worse.

Secondly, I was delighted to read that the variety of faces had increased considerably but I wonder if that means that the ethnicity and physical conformation of the lego faces now watches with the population as a whole. In particular, are there some figures who have evil characteristics who have been ‘given’ stereotypical scarring?

My antennae for such influences on children has been heightened recently by Victoria Wright’s experience of being linked with a Monster in her daughter’s playground and the experience of her friend who was likened to a Moshi Monster. So I am going to take Dr Bartneck’s academic paper for a bit of weekend reading – and will be posing him some questions too!

The journey from King’s Cross Station to the National Portrait Gallery

It’s only a short bike ride across London – I do it regularly – going down Gower Street past University College Hospital with the Rayne Institute and Changing Faces on the right in University Street, then on past Bedford Square and down through Seven Dials and St Martin’s Lane. But it’s also a highly symbolic journey for me this evening.

Back in the autumn of 1987, I had already survived the Hurricane which swept through Guernsey taking down 15 huge trees on our farm but leaving all the 70 cattle unscathed… and guided my A Level Economics classes at The Ladies College through the excitement of Black Monday, 19.10.87 when the Dow Jones dropped 22.6% in one day!

But nothing could have prepared me for the aftermath of the King’s Cross Fire that was marked solemnly last Sunday. I remember being stunned that a third huge fire disaster could dominate the headlines – Bradford City football stand fire and the Piper Alpha oil rig were hardly a year past… And the stories of death and severe burns touched me to the core.

But I had much to get on with as I tried to juggle the arduous daily round of dairy farming and teaching with being an active father to our three small children.

A week later, a letter arrived from my good friend, Paddy Downie, an editor at Faber & Faber for whom I had written a chapter in her 1983 physiotherapy textbook. Her news was good in that a new edition had just been commissioned and she’d like me to update my chapter for a small fee – of course! All income willingly accepted in our subsistence mixed economy!

But she added a hand-written footnote: after the ghastly fires, had I thought of trying again to get my book published (I’d tried in the early 80s)? Would I like her to approach Penguin?

And so it happened. By March 1988, I had signed to write a Penguin book! I delivered it after much angst a year later and it appeared in April 1990.

In it, I referred to the very good news that Britain’s first Professor of Plastic Surgery, Gus McGrouther, had been appointed at University College Hospital, funded by the Phoenix Appeal set up by Michael Brough, the surgeon on duty on the night of the King’s Cross fire. Only a few weeks after the book appeared, I received a letter from a Professor! Would I be interested in meeting him and Michael?

And so it was that I found myself in the early summer of 1990 walking into the Rayne Institute in University Street to be part of a TV film being made about burns and their treatment, including the psychological and social effects. And the three of us went for dinner afterwards… It was an important meeting because we talked fervently about what needed to change and develop – medical science, psycho-social care and public attitudes. A three-legged (milking) stool, one of my favourite visual aids, came to mind… Could the Phoenix be the vehicle for raising much-needed funds?

In the years that followed, the chrysalis of the Phoenix metamorphosed into the Healing Foundation and alongside it, emerged Changing Faces which is now based right opposite the Rayne Institute in University Street… the first 20 years of which is being celebrated in the National Portrait Gallery this evening…

It is very apt that we should celebrate amongst portraits. Their creators attempt like surgeons to knit together facial features to convey a person with respect to the world’s eyes. Changing Faces’ goal is so to influence the world’s gaze that scars and asymmetry no longer carry stigma but respect – and, as that’s bound to be a long haul, to empathise and empower in the meantime.

Why the BBC Trust’s ruling on Top Gear matters

It has taken seven long months, much persistence and pages of tough legalistic arguing by Changing Faces to achieve the BBC Trust’s milestone judgment. Jeremy Clarkson and Richard Hammond’s scripted remarks about a car they called ‘the Elephant Car’ did indeed infringe the BBC’s code on harm and portrayal as laid down in their Editorial Guidelines.

Who should take this ruling seriously?

Firstly, BBC – and arguably, other TV – programme makers. The most important passage in the BBC Trust’s decision is this: “The Committee was also mindful that its own finding on this complaint would stand as a reminder to programme-makers of the need to be aware that audiences may find casual or purposeless stereotypes to be offensive”.

Secondly, the Top Gear presenters who, despite the ruling, have persisted in their offensive comments about faces this week on Twitter.

Thirdly, people with disfigurements. Changing Faces exists to improve the quality of life for people with disfigurements and a big part of our effort involves campaigning to ensure that we can all lead a life free from verbal and physical abuse. I hope that lots of people whose faces look unusual will be empowered by this week’s decision to step forward into the spotlight and say ‘Enough!’.

Why does this ruling matter?

Because it highlights just how far we still have to go before Britain’s moral compass shifts to give respect and dignity – without any whiff of ridicule, prejudice, stigma or low expectations – to the 1.3 million people in this country who have a disfigurement to their face or body whether it’s a condition they were born with or acquired later in life as a result of accident, violence, warfare, injury, cancer, skin condition or paralysis.

It is wrong that in 21st Century Britain people like me have to put up with shouts of ‘Phantom’, ‘Alien’, ‘Cor, look at that’, ‘Uurrgh gross’ in the street. It is wrong that children have to endure shouts of ‘Elephant Man’, ‘Pig face’, ‘Freak’ in the playground and then be kicked, punched and spat upon simply because they have an unusual face. It happens and it must stop.

Why are people with disfigurements still fair game for behaviours that would be considered criminal offences if inflicted upon people of different backgrounds, ethnicities or sexuality? We are all protected under the Equalities Act and yet these insults continue. It must stop.

Everyone needs to learn a new respect for people with disfigurements. It starts with the culture and throwing away Victorian freak show’s stereotypes. The new respect is not built on sympathy or pity, and it rejects the vernacular of the medical profession with its labels of ‘deformed’, ‘abnormal’ and ‘defective’.

Instead it acknowledges that we are all citizens with rights, everyday problems, likes and dislikes, lovers and children. It has a new language and way of talking about disfigurement that is factual, respectful and non-judgemental. And that is just the start. We need to question how television and film represent disfigurement, how schools teach about it, how art portrays it, and the written media writes about it. Our entire culture needs a radical overhaul.

On to the next milestone…

Twenty years ago today

Tuesday 26th May 1992 was the day after the May Bank Holiday Monday, a quiet day in the newsrooms of London – and about 10 journalists and the BBC TV News team turned up for a press conference in the Kings Fund Centre in Camden Town to launch a new charity, Changing Faces. The TV news at lunchtime and at 6pm carried the news and that evening a short film by Martin Lucas appeared on ITV’s early evening news digest. The following day all the nationals carried items about the charity: “a new charity has been launched to develop new services to help people with disfigurements from any cause live full and confident lives and to challenge public attitudes”. In one or two, like The Guardian and The Times, there were longer pieces with interviews with the founder and his supporters.

That’s it in a paragraph! But what was it like? I can remember going early into our tiny and ill-equipped office behind Old Street station which I had sub-leased from a friend and leaving about 9.30am to get the tube up to Camden Town. Nervous, anxious to see if anyone would come.

The day was the culmination of about 8 months work since the previous September when I had decided, with my wife’s blessing, to have a go at creating the charity. We had raised a little money, found Trustees, registered with the Charity Commission, found the office and commissioned a PR company to create a launch.

More importantly, the ideas which I was determined to develop with academic evaluation had already been tested in three preliminary workshops – and the feedback had been very good. About 25 people, all with facial disfigurements from a variety of causes, had had the chance to meet each other, to share notes and feelings, to explore how they faced the world and to learn some new skills for doing so. They liked the experience and I had powerful quotes in my papers for the launch.

I also had the close support of an academic psychologist, Dr Nichola Rumsey, whose PhD thesis had become half of the seminal work, ‘The Social Psychology of Facial Appearance’ (Springer Verlag) with Ray Bull a few years earlier. She had endorsed my ideas, outlined in my 1990 Penguin book (Changing Faces: the Challenge of Facial Disfigurement), that people who acquire a disfigurement from any cause needed more help to live in a looks-obsessed culture – which also needed to change its attitudes. That help should not just be surgical and medical but needed to have a strong psycho-social component too which should strengthen their self-esteem and give them the social skills to manage other people’s reactions, thereby building confidence.

So we knew we had a case and there was a huge deficit in what help was available. Public attitudes would take years to shift but maybe… Could we get a new charity off the ground?

The Joan Scott PR team was certain we could – with luck! And we had it, I think, that day. The press release cited Simon Weston, the Falklands soldier, giving his strong support for the charity and seemingly suggested he would be at the press conference. He wasn’t. But we had a strong turn-out: Sir Campbell Adamson, our first Chairman and also Chairman of Abbey National, hosted the event inviting Dr Rumsey, plastic surgeon John Gowar FRCS, and me to speak and take questions. A leading medical journalist from the BBC, Barbara Myers, interviewed me very empathetically and I knew then we were in with a chance.

It was all over in a couple of hours and we all went our separate ways. I went back to my tiny room with a phone, a chair and a make-do desk… and the phone starting ringing… and it didn’t stop for days, weeks, months, years…

I have many many people to be grateful to – thank you all! Changing Faces today is strong, empathetic, determined, passionate about fairness and a voice that is being heard and listened to. And, despite all our efforts, there is so very much still to be done.