Why should I hide away? – The Guardian, 27 June 2000

We value beauty so highly that living with disfigured features can be unbearable. Angela Neustatter talks to two people about how they cope – and about how a new charity is tackling the prejudice. The left-hand side of Henry de Lotbiniere’s face is a wreck. What was once an angular cheek meeting chiselled jaw, is now concave. There is a protuberant flesh covered lump in the place where his eye used to be. When he lifts the dark forelock of hair which hangs low over his brow you see a crater-like hole where half his forehead has been removed.

This is the legacy of the 15 surgical operations that de Lotbiniere has undergone in the past 12 years, since a cancerous tumour was first discovered in the roof of his mouth followed by one on the optic nerve behind the left eye. “He was a handsome man,” says Iain Hutchison, consultant oral and facial surgeon at St Bartholomew’s and the Royal London Hospitals, of his patient. “But he had to have a succession of operations each more horrific than the last.” So what prompted the 54-year-old to put his face on public display? De Lotbiniere was one of 70 patients who agreed to sit for Mark Gilbert, artist in residence at St Bartholomews and the Royal London Hospitals. Gilbert’s vivid, finely detailed portraits of faces during and after treatment form a unique exhibition to mark the launch of Saving Faces, a charity set up by Hutchison to raise funds for the prevention and treatment of oral and facial diseases. One million people need hospital treatment for facial injury annually, Hutchison points out, and although oral cancer is more common than cervical cancer it receives one 20th of the funding.

In a culture that puts such emphasis on conventional beauty and where, as research has demonstrated, people not deemed good looking are also seen to have less desirable personal characteristics, why did the subjects choose to expose themselves in this way? “I was luckier than many people because my cancer occurred when I was in my 40s,” de Lotbiniere explains. “I was already established in my career. I had a wife who didn’t take fright and run off at the sight of me but who has been wonderfully supportive, and although my children were just reaching their teens when I had the first operation, my appearance doesn’t appear to have worried them.

“But I am sure the effect of having this wrecked face would have been far harder if I had been at that age when the aim of life is looking for friends, a wife, a job,” he adds. “I feel passionately that it is important to face the world and say that I am the same person I always was, even though my face is altered.” A medical barrister, de Lotbiniere chose to be painted in his wig and robes because he continues to go into court in his very public profession. Mark Gilbert explains that he wanted to depict the humanity in his subjects. “Whereas a photograph shows just one quick image of a person, which can be very stark, portraits are an opportunity to show a person in more depth, to emphasise what is interesting and charismatic about them.”

Paul Farrant, psychologist at St Bartholomew’s and the Royal London hospitals, has been evaluating the effect on the patients of being painted: “Mark said that while they were sitting for him people began talking about their feelings and saying it was helpful. We set up a study, which has shown that the paintings are making it easier for people having problems to come to terms with their new appearance.” Because Gilbert painted his subjects at home, with their families, and in some cases wearing the clothes that are integral to their professions, they began to see themselves as more than just the face they have been focusing on. They began to see themselves as people living more rounded lives.

“One man who has facial cancer now produces a photo of his portrait whenever a person says something about his face,” says Farrant. “He engages them in a surgical narrative of where he was and what has happened. It means he is not a hostile outsider – which is how people with deformities are so often regarded – but somebody with a story and a means by which to talk to people.”

The importance of finding a way of coping with disfigurement is imperative for people like Vicky Lucas, 21, whose condition cannot be treated effectively. She was born with cherubism, a very rare childhood disease that enlarges the jawbone and makes the eyes protuberant. Lucas’s symptoms became severe as she entered her teens. “Children, and sometimes adults, too would call me ‘Desperate Dan’, ‘Popeye’ and ‘alien’. When I went to an all-girl secondary school I was bullied a lot and the girl who had been my best friend turned against me. She used to draw pictures of my face in class.” Lucas was helped to develop skills she needed to deal with such behaviour – and equally importantly to find value in herself – by the charity Changing Faces, which supports people with facial deformities. It holds group workshops where people can share experiences, offer counselling and advice and publish booklets for parents of children with disfigurements.

Lucas says: “They helped me to see that I was wanting to change my face to please other people. But why should I have to do that or hide myself away? I’m now finishing a degree at college in media studies. I have very good friends and although I certainly won’t pretend it’s always easy being as I am I don’t see the cherubism blighting my life.” Important as it is to challenge the prejudices in a culture that is obsessed with the perfect image, there is also an urgent need for further research into early diagnosis and effective treatments. Hutchison already has 38 surgeons willing to do this work if he can raise the funds to set up a trial centre. “This way we can save faces and help people face the world.”

Why should I hide away - The Guardian, 27 June 2000

[Reproduced from The Guardian Health and Wellbeing Section on 27th of June 2000. Article by Angela Neustatter.]