Challenging perceptions and public attitudes
The founder and former CEO of Changing Faces — a charity that supports and advocates for people who have disfigurements — knows only too well what it’s like to be stared at and ridiculed. In 1970 James Partridge (then 18 years old) was severely burnt in a car accident leaving him with 40 percent burns to his face and body. Here, MissionBox writer Kellie Smith talks to James about how his life was turned upside down — but how it was also a crucial turning point towards a positive ending.
What inspired you to set up Changing Faces?
As a teenager, your face and appearance are so important. It seems crazy now but before the accident I traded on my looks — they were very precious. Looking in the mirror for the first time after my accident was a massive shock. My self-esteem was blown to shreds. There was very little help out there. All people could say was “have more surgery” but, despite its brilliance in rebuilding my face over the next five years, it wasn’t the fix everyone thought it might be. Nothing was easy. I found it difficult to walk down the high street and meet old friends.
I went off to university and had to manage the reactions of lots of different people. I had absolutely no idea how to deal with it — the staring, comments, ridicule, avoidance and the sense of being an outsider. Even having a simple conversation with someone was difficult. My disfigurement raised all sorts of doubts and questions: as an 18-year-old, I wondered if I’d ever flirt again, what my friends would say, if I had any left and whether I would ever get a job, let alone a life.
That lack of help and advice was the origin of the charity. I set up Changing Faces 20 years later to pioneer and provide psychosocial support for people with facial disfigurements to help them rebuild their confidence. I wanted people to be able to manage their feelings, cope in social settings, handle other people’s reactions and deal with new transitions. And I also wanted to challenge and inform public attitudes towards people who look like me.
How did you persuade NHS health providers to add the kind of psychosocial rehab you lacked to the health agenda?
From day one, I had a strong commitment to evaluating what Changing Faces did so it wasn’t just ‘James Partridge’ saying this works. Without evidence clinicians wouldn’t be interested in what we were doing. We needed independent academic studies to demonstrate that psychosocial rehab makes a real difference to patients.
I teamed up with Professor Nichola Rumsey, based at the University of West of England in Bristol, to carry out research and follow up with the people who had been through the charity’s programs. Together, we set up the Centre for Appearance Research in 1998 (Nichola was the director for 20 years). We then took our findings to the National Institute for Health and Care Excellence and clinical reference groups, and presented to clinicians, social workers and policymakers at many academic conferences. And gradually the message sunk in: psychosocial concerns are real, can be very distressing and, most of all, can be addressed effectively. There’s a lot more work to be done but today at least, psychosocial concerns are taken seriously in some healthcare settings in the UK (especially by cleft and burn care teams) and a lot of clinics have psychologists on site to support people with facial disfigurements.
Changing Faces played a key role in helping to lobby for disfigurement to be covered in the Disability Discrimination Act 1995. Tell us about this work.
When I set up the charity in 1992 there was no Disability Discrimination Act in the UK. I made it my mission to connect with other disability organizations which were lobbying for such protection, because I felt that disfigurement should be covered by that legislation. A disability bill was produced but it didn’t include people with disfigurements. We became very active and managed to successfully lobby for the 1995 Act to include this protection. We put disfigurement as a human rights issue on the map. And the subsequent Equality Act 2010 provides ongoing protection against discrimination in work and day-to-day life.
Do you think that attitudes and views towards those with disfigurements have changed over the years since you had your accident?
Yes, I think the work that Changing Faces has done over the last two decades has made a significant difference, especially the ‘Face Equality’ campaign which has been running since May 2008. There are now some very positive role models who are helping to foster acceptance of people with disfigurements. People like Katie Piper who is on Strictly Come Dancing, Adam Pearson, who presented Channel 4’s Beauty and The Beast: The Ugly Face of Prejudice and starred in Under the Skin with Scarlett Johansson, and model Winnie Harlow are all helping to spread positive messages about disfigurement. The recent #PortraitPositive initiative from Changing Faces — featuring photographs of people with facial disfigurements and skin conditions to challenge the narrow view of beauty in fashion — is having some impact too, I think.
When I was at Changing Faces I also appeared as a guest newsreader on Five News for a week in 2009; the aim was to monitor people’s reactions when my face came on screen. There seemed to be absolutely no change in the viewing figures. We had 1,000 emails come through and only one person said they changed channel.
That’s all amounting to a good start but there’s still a long way to go before people with facial disfigurements have equality. Negative views of facial disfigurements are conditioned early on in life and reinforced. Scarring and asymmetry is not seen as part of life’s rich pattern and is often associated with villainy and evil. Hollywood and children’s books tend to suggest that ugliness is a bad thing.
What are some of the challenges people with facial disfigurements experience on a daily basis?
Changing Faces carried out a survey, Disfigurement in the UK, in spring 2017 that looked at how people with facial disfigurements are treated in all aspects of their lives, including work, school, relationships, health care and crime. Around 800 people responded to the survey and the results were pretty shocking. Four in five people with a disfigurement have experienced comments or unpleasantness from a stranger, half of all school children who have disfigurement experience discrimination and 80 percent have avoided applying for a job because they thought their appearance would hinder them at interview or because new colleagues would make them uncomfortable. The stats go on.
You wrote a book about your personal experiences of facial disfigurement and the lessons you learned. Tell us about this and the reaction you’ve had from other people.
When I first had my accident there was no support out there, so in the early 80s I tried to get a publisher interested in a book about my experiences and the lessons I learned — a book I wish I had had when I first had my accident. The idea didn’t sell then but I kept in touch with the publishing house. In the late 80s there were three big fires in Britain — one on the oil rig, the Piper Alpha; one at Bradford City football stand, and perhaps the most public of all, the fire at King’s Cross [London]. After those fires the publisher got back in touch saying: “Let’s try and get this book sold now.”
Changing Faces: the Challenge of Facial Disfigurement, published by Penguin in 1990, was met with a warm reaction, both from people who had facial disfigurements and health professionals. This was in the day before websites and email; people had to write to Penguin and the publisher passed on the letters about three weeks later. I also received phone calls saying: “I wish this had been available to me earlier.” The professionals — plastic surgeons, nurses and dermatologists — realised after reading it that the health sector wasn’t providing the support people needed to get back into society. The idea of the charity came from these warm responses — and I was humbled by the huge goodwill Changing Faces received from then on!
You stepped down as CEO of Changing Faces at the end of 2017. What are you doing now?
I’m now devoting my time and energy to running an alliance of NGOs worldwide called Face Equality International. Launched in October 2018, the alliance is taking forward the Face Equality campaign that Changing Faces launched in 2008. Face Equality aims for people with facial disfigurements to be accepted and valued as equal citizens.
The campaign took off in the UK when it first launched and was also picked up in other countries. For instance, in Taiwan, a local NGO called the Sunshine Welfare Foundation has been running annual Face Equality Days since 2009. The alliance will hopefully provide lots of opportunities for NGOs to work together, both in country and internationally, to create a growing force which I hope will amplify the message.
We have nine founding members (NGOs representing people with many different disfigurements) and I’m confident we can increase membership to 30-plus NGOs. That would be a sign of how much we want to work together to raise awareness of disfigurement as a human rights issue. Face Equality International aims to turn the campaign into a movement.
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James Partridge is the founder and former CEO of Changing Faces, a charity set up to provide psychosocial support for people with facial disfigurements to help them rebuild their confidence. James stepped down from the CEO role at the end of 2017. He is now the director of Face Equality International.