Living with a disfigurement is different but not defining
As the film version of children’s book ‘Wonder’ is released Giulia Rhodes speaks to young people with facial disfigurements
‘The only reason I’m not ordinary,” says 10-year-old Auggie Pullman at the start of bestselling children’s novel, Wonder, “is that no one else sees me that way.” Auggie has Treacher Collins syndrome, a rare congenital condition in which the cheekbones, jaw and eye sockets fail to develop leading to facial disfigurement. “I won’t describe what I look like,” he says. “Whatever you are thinking, it’s probably worse.” Now Auggie’s story – by author RJ Palacio – is being told on the big screen, in a film starring Jacob Tremblay, Julia Roberts and Owen Wilson as Auggie and his parents, released in cinemas this Friday.
For Lucy Ritchie, a 21-year-old student with the same condition, the film is an exciting opportunity to raise awareness of what life with facial disfigurement can be like. She is one of 569,000 people in the UK living with significant facial disfigurement. Causes include congenital conditions, scarring from accidents, burns and surgery and some skin conditions.
Lucy was born with no cheekbones, ears or jaw. She was fed through a tube for two years, required a ventilator at night for eight years, uses a hearing aid and, so far, has had 19 operations.
None of this, she says, has held her back. “It has made me more determined. It is my way of proving that I may look unusual, but that isn’t going to get in my way. I get on with what I want to do.”
Next summer, Lucy will graduate in management and marketing and, after a year’s placement at Disney’s London office, she is excited about her career.
Like any other young woman, she enjoys going to the cinema, playing tennis, listening to music, watching Netflix and going out with friends. “I am very much a social person. I like the usual stuff,” she concludes.
Difference may be part of her life – “I get stared at on a daily basis” – but it is not how she defines herself. “Yes, it is unfortunate to be in this situation, but if you have the attitude that you are no different, others will eventually share that,” she says. “I try to be more friendly and forward so that people have to see that.”
For the most part, Lucy doesn’t let reactions to her appearance upset her. “I am used to it and I have cracked the different stares – confused, curious, sympathetic or disapproving. If people really keep staring, I tend to think of it as their problem, their ignorance, but I think for many people it is curiosity and I accept that.”
There are, she laughs, even some upsides. “The local coffee shops all know my order.”
On one occasion, queuing for Madame Tussauds in London, she adds, Lucy’s father was told she and a carer could get in free, due to her disability. “My mum was furious with him for accepting, because they always wanted to show me I was no different, but Dad’s an accountant.”
Of course, Lucy acknowledges, her striking positivity is not always enough. She recalls, aged 13, sitting in the back of the car with her younger brother and sister and seeing a group of teenagers filming her on their phones. “It can really hurt,” she says.
The instinct of her family and close friends – “who just see me as me” – is often to become angry or upset and perhaps to confront, something Lucy avoids. “I don’t want to have to deal with people’s reactions,” she says. “I find it easier to change how I deal with people than how they deal with me.”
The impact of Lucy’s condition has been not only an emotional, but also a physical one. At the age of 16, she walked out of hospital, already in her surgical gown, having taken the decision not to go through with an operation to build on previous skin and bone grafts, easing her airway. “One aim was to make it less obvious so people didn’t stare as much,” she says. But the idea of the operation was “terrifying”: “I concluded I would rather not change the way I look if that was what it meant.”
Life is too busy to reconsider her decision just now, she says, although she will need the airway surgery at some stage. Having moved from her Glasgow home to university in Aberdeen, and with graduation – another milestone – on the horizon, Lucy is more focused on her social life, studies and career.
Many of her friends are now in relationships and it is here, Lucy says, that the impact of her difference is hard to ignore. “People do judge a book by its cover. I don’t know if that will change. It would be nice to have a relationship, but I have plenty to keep me busy in the meantime.”
Lucy’s belief, that many still find it hard to see beyond her different appearance, is common, says Elizabeth Noble, psychotherapist and head of client services at the charity Changing Faces, which supports those with disfigurement. “Someone isn’t just their scar or their birthmark or whatever it might be. They are a whole person,” she says.
Many of those she speaks to find it hard to share Lucy’s resilience to negative reactions. “Anxiety and fear about social situations can build. The world can shrink. There can be frustration and anger and resentment at stigma and discrimination. Did I really not get that job because of something on my CV, or on my face?
“We want people to be able to live the lives they choose,” she says. Learning ways to take control of their reactions can really help those affected. But crucially, she adds, it is also incumbent on society to change perceptions and prejudices.
Sam Thompson, 13, from Sheffield, was born with a cleft lip and palate, the most common facial birth disfigurement in the UK, affecting around 1 in 700 babies each year.
Like Lucy, he has a group of close friends, hobbies – swimming, riding his bike with friends and watching rugby – and enjoys life.
“He is kind, sensitive to others, he has a great sense of humour and he is confident in himself, which was always our main concern,” says his mother, Claire, 44, a call centre manager.
“I do feel anxious and protective,” she says. “When he gets on the bus to school, I worry. He is open to comments, stares, bullying. I know as he gets older that young people find it harder to see beyond the looks to the character.”
Sam has had eight operations for a bilateral cleft affecting his lip, soft and hard palate, and this, for Claire, has been the hardest thing. “I hate it when they put him to sleep, even though he always takes it in his stride.”
Sam has now had all the medically necessary repairs. A specialist team is continuing to monitor him as he grows and will take into account his own wishes about any further surgery.
Claire worries that pressure to look a certain way may make life harder for Sam in the coming years. But Sam is confident he will cope. “I suppose some people decide not to talk to me because of how I look, but I try to ignore that. I kind of like being different. It wouldn’t be good if we were all the same.”
The hope is now that, if the film Wonder enjoys anything near the success the book had, it will be an important education for us all.
‘I suppose some people decide not to talk to me because of how I look. I try to ignore that’