Facing the future

James Partridge is not a man to shy away from publicity. In fact, he welcomes it because publicity equals exposure and exposure equals awareness. James is the founder and director of the charity Changing Faces, which aims to provide direct help to those with facial disfigurements and promote awareness in those without them.

Thirty years ago, at the age of 18, the Land Rover he was driving overturned and caught fire. That completely changed his life. "I don't encourage you to go into fire," he said, as if to dispel any notions I might have been toying with. "There is no air in fire. To get out of it is to feel quite liberated. Glad you survived." The other passengers escaped with relatively minor injuries.

James suffered severe facial and body burns. "After about three months, I looked at myself in the mirror for the first time. And what I saw was something different from what I was expecting to see," he said. "Very, very different face, and 40% burns."

Two stages to rehabilitation

James believes that there are two stages to the rehabilitation process of anyone who has suffered burns. One is coming to terms with the disfigurement. "I had to rewrite a lot of what was going on in my head. That it was going to be tough, that I would not have much success looking the way I did, that I would have to be on the margins," he said. "And that I was no hero, because the accident was my fault." Interestingly, he attributes his inspiration to his family and friends and to a lot of feminist literature that was about at the time. It helped him dispel assumptions of what was the accepted norm for people to be like and look like.

The second step to full recovery is learning to manage other people and their reactions. "From meeting new people, to going down the street. Everyday things, which I had previously taken for granted. Meeting little children. Going in public transport where people are very close up to you." He emphasised that social interaction is a crucial part of the second stage.

James agreed that the timing of his accident made a lot of difference to his eventual acceptance of his new self. "In the 1970s it was very free," he explained. "It was the days of the beautiful people-we didn't care what we looked like. The pressures on people today are much, much greater than they were." After the King's Cross fire in 1987, he was approached to write a book sharing his experiences with other people with facial disfigure- ments. The enthusiastic response to his book, also called Changing Faces, inspired him to set up the charity to help other people living with disfigurements.

A new sort of support

The charity started with only a tiny team providing a new sort of support for people, something more than just a listening ear. It offered training in skills that would be useful to help them accept their new appearance. "We demonstrated, through academic and research studies, that this approach worked. People's self confidence and self esteem did go up."

Statistics from the charity show that only 28% of people contact it as a result of an accident. Skin conditions and craniofacial abnormalities make up 28% and 15% respectively. The charity found that, although these people had different conditions medically, psychosocially they had very similar concerns. James emphasised that the size or severity of the disfigurement does not necessarily correlate with the ease of adjustment. "We shouldn't just end up dealing with the really severe," he said. "Some of the research has shown that the really severe disfigurements were, in some ways, easier to adjust to than the small ones."

Individuals can thrive

"Things that aren't life threatening can be just as damaging to people's wellbeing," he said. "But equally, I want to assert that it doesn't necessarily mean you have to remove the disfiguring feature. In the right social climate, that individual can thrive."

The charity runs training programmes for doctors and nurses, with a separate team providing advice to clinics. It also has links with a research centre at the University of the West of England in Bristol the Centre for Appearance and Disfigurement Research. The centre focuses on establishing the psychosocial needs of patients and examining how society perceives those whose appearance is "unusual." The charity does a lot of work to raise public awareness by working with schools, employers, and the media. A successful campaign also managed to get disfigurements included in the 1995 Disability Discrimination Act.

Research is currently being carried out looking into the possibility of using the charity's models to help teenagers who are anxious about their appearance. "Very few people live up to the crazy norms of the magazine model," James told me. "So most of us are living with an imperfect appearance. The tyranny of this ridiculously narrow band of 'good looks' and how we are all obsessed with getting into that narrow band is crazy. The lovely thing about disfigurement is that you feel liberated. I no longer worry as to whether or not I fit."

Changing Faces can be contacted at 1-2 Junction Mews, London W2 1PN.
Tel: 020 7706 4232 www.changingfaces.co.uk

Marissa See, intercalating medical student, University of Westminster
Email: marissa_see@yahoo.com


studentBMJ 2001;09:43-84 March ISSN 0966-6494