Can you describe your own experience of facial disfigurement and its impact on your life?
I grew up with a ‘near-perfect face’ in 1960s, a time when ‘good looks’ were very highly prized although, perhaps, a little less obsessively than they are today. I certainly believed that my face was a passport to success in my future. Then at the age of 18 in 1970, I was suddenly severely injured in a car fire which changed my face – and my life – forever.
Instead of a gap year travelling, I was confined to a burns unit and although I went up to university, every vacation was taken up with plastic surgery – and this went on for four years. I had to come to terms with the aesthetic limits of the brilliant surgery I was receiving and, even harder, look at my totally damaged face in the mirror and meet the public gaze. I thought of my face as *IT*.
*IT* could not possibly be Me. From the first time of seeing *IT* in the mirror and for a long time, if I ever had to refer to *IT*, I refrained from talking of ‘my’ face. Inside me, it was *IT*. To others, I talked about my injuries, scars or skin grafts.
In my new book, FACE IT, I describe my struggle to ‘face it’, to deal with other people’s reactions and my own sadness, loneliness, shame and anger, and how, over five long years, I found a way to break free of the stigmas of disfigurement – the low expectations, the moral inferiority, and my false hopes for reconstructive plastic surgery. By trial and error, I eventually found new self-respect and a new ‘me’ thanks to the support of many friends and my family but with no professional help. By 1979, I had married a Guernsey girl and we set about building a dairy farm in St Andrew’s. I started teaching economics at the Ladies’ College and we were living life to the full.
What prompted you to write your first book, Changing Faces: The Challenge Of Facial Disfigurement?
At the end of the 1980s, there were three major fire disasters in Britain: Bradford City football stand, the Piper Alpha oil rig and King’s Cross tube station, and, out of the blue, I was invited by Penguin to write the book that I wished had been available to me after my accident. In it, I tried to pass on the lessons I’d learned from living with my distinctive face for 20 years to anyone who had or was going through a similar experience – whether from a cleft lip and palate, a birthmark, an accident or violence, facial cancer, Bell’s palsy, a skin condition like acne, psoriasis or vitiligo, or for any other reason.
Why did you decide to set up the Changing Faces charity?
The very warm response to the book and my growing awareness of the still-yawning gap in professional psychological support for people with facial differences led me in 1992 to found a charity, Changing Faces, to develop and spread the lessons I’d learned. I hoped people would no longer have to ‘face it’ alone, as I had done.
In the very early days and with lots of support from Guernsey people (including critical start-up funding from a local benefactor), we set about creating two-day workshops to tackle people’s low self-esteem and lack of self-confidence which were soon complemented by one-to-one support, family programmes and self-help guides.
From the first day after Changing Faces went public, the phone rang and rang, people enrolled on our workshops and letters came in. After a month, I could be in no doubt. I was definitely not alone – and had not been alone all those years – in finding it very hard to live with *IT*. Facial stigma bore down on people with disfigurements incessantly as soon as they left their homes. Many were very far from being adjusted to living in our society. They were just forlorn. And angry. And impotent to change anything about their situation.
I knew I was doing the right thing, even though the demands of running a UK-wide charity meant that I was increasingly away from the island and would eventually mean having to sell our beloved farm and move to England with our three children.
Can you explain what it is like to live with a facial disfigurement?
The human face is the canvas that is on show every day to everyone you meet. Your moods, your personality and your experiences are painted on it for all to see and judge. It is the image people call to mind when they think of you – it’s your identity. And it is what you see in the mirror and call ‘me’, your self-image, in your internal conversations.
Perhaps most significant, our faces are where people look when they meet us – at work, in school, in the park or bus or on social media — and what our face looks like leads to instant face-value judgements about us.
If you have a face that is distinctive or unusual-looking, all of these ‘significances’ become complicated. In today’s face-perfect culture, your sense of worth may be inhibited, your self-image damaged and other people’s responses to you less than fair. As a famous US social anthropologist said, you lose (or lack) that ‘sense of civil inattention’, that anonymity, in public places that everyone else takes for granted. These impacts can be profound, lifelong and cannot be underestimated.
Many people with facial differences worldwide report feeling low self-esteem in today’s global ‘perfect-face’ culture, being isolated and friendless, facing teasing, ridicule and staring in public places, low expectations in school, problems getting work, discrimination at work, abuse on social media and stereotyping in the media. In many countries, disfigurement goes hand in hand with poverty and exclusion.
Which is not to deny that there are many conditions, injuries, etc. that affect the appearance of a person’s hands and body, like arthritis or limb amputation, which can be very psychologically and socially distressing too. Some of the visual effects can sometimes be covered up with clothing and other devices.
What was the idea behind your new book, FACE IT: Facial Disfigurement And My Fight For Face Equality?
FACE IT has been long in gestation! Many times, I have been asked since writing my first book when I was going ‘to tell my story’. Similarly, in the 25 years of directing Changing Faces up to 2017, I frequently wanted to explain the rationale and content of our pioneering and evidence-underpinned package of psycho-social help. And, after we launched the campaign for ‘face equality’ in 2008, people encouraged me to write more about the origins of ‘face-ism’, and what needs to be done to eliminate it.
FACE IT brings it all together in the three Ms — it’s a no-holds-barred memoir, a self-help and professional manual and, hopefully, a compelling manifesto for face equality – like race equality.
Why did you create Face Equality International?
Over the years of leading Changing Faces, I made many international friends and allies – people with facial differences, the charities and NGOs supporting them, health professionals and academics. I had always hoped to create ventures and alliances with them – and setting up an international alliance of NGOs to campaign for face equality seemed a very natural next step after Changing Faces.
Face Equality International (FEI) is set up as a Guernsey charity and started life in November 2018 with nine founding NGOs including some of the biggest players like Smile Train, the Phoenix Society For Burn Survivors and the Sunshine Social Welfare Foundation in Taiwan. I’m delighted to say that we now have 36 NGOs from all over the world in the alliance and have just marked the second International Face Equality Week with some superb social media engagement greatly enhanced by a four-minute film of people from 20 countries telling what face equality would mean for them.
What would you say has been your proudest achievement so far?
Seeing my six grandchildren growing up without a face-ist thought in their heads!
And your biggest challenge?
I suspect the post-Covid world will throw many challenges for charities and social entrepreneurs like me but I believe passionately that we have a vital role to play in resetting and rejuvenating the desperately damaged societies and economies that will emerge – in Guernsey and around the world.
What are your hopes for the future?
I’m hoping that FACE IT will strike chords, energise and be useful to many people – those challenged by the lived experience of a facial disfigurement, those seeking to support them and their families, and everyone who cares about the campaign for face equality – and, just as the #BlackLivesMatter movement has gained support from people of all ethnicities, so I hope #FaceEquality will be adopted by people with faces in all their glorious shapes and hues!
Personally, I’m looking for new avenues at home and abroad to spread these messages – and, of course, to make them relevant in the post-Covid world.
What are the main messages you would give someone struggling to come to terms with facial disfigurement?
Three short messages:
It is normal to find living with a ‘not-perfect face’ difficult in our face-perfect society – many people do. Be kind to yourself; you are not alone
Be prepared to challenge your own negative assumptions about your future and to change the way you communicate with other people. There are strategies you can adopt, and you could find some surprising positives
Try to find the energy/courage to reach out to the sources of help now available but be cautious of any that offer ‘quick fixes’.
To order a signed copy of FACE IT, go to www.jamespartridge.wordpress.com/ordering-face-it-directly/
Face Equality International: www.faceequalityinternational.org
Changing Faces: www.changingfaces.org.uk
Changing Faces Channel Islands: www.changingfacesci.org.gg/