'Having a disfigurement can be a lonely experience'
Pupils who look different often struggle to fit in. Hannah Frankel reports on what schools can do to help. Photographs: Colin McPherson. Rebecca McKenzie Knight, 17, was adamant she did not want to do PE at school. She has third cranial nerve palsy, or a droopy eyelid, which means that she cannot see out of her right eye. So when a ball came towards her, she would struggle to see it. Invariably, it would hit her.
"I have appalling hand-eye co-ordination," laughs Rebecca, who lives in Cheshire. "The school said I should just use a softer ball, but that wasn't the point. I was still hopeless at it. The PE department just didn't listen."
Rebecca's teacher eventually acknowledged the problem and introduced a choice of activities for the whole class - a good solution that meant Rebecca did not feel singled out for special treatment. But she was still put on stage in drama classes until Year 9, despite hating being looked at. These are the sort of small but significant issues that pupils with disfigurements face every day.
More than 400,000 people live with a disfigurement in the UK, and one in 100 children has some form of "visible difference". It may be anything from birthmarks to a cleft lip or vitiligo, a condition where patches of skin lose their pigment, but the effect on the individual can be devastating.
A survey in 2003 showed that 93 per cent of Britons think that children with disfigurements are "very likely" to be bullied at school. Even those who don't face unpleasant remarks can be acutely aware of other people's awkwardness in their company. It is all too easy to see how so many become depressed, self-conscious and isolated.
However, schools can and do help these pupils build confidence and resilience. "There is going to be a lot of staring and curiosity if a child looks noticeably different, so teachers need to be prepared," says Jane Frances, education advisor for Changing Faces, a charity that supports people with disfigurement. A former teacher and author of Educating Children with Facial Disfigurement, she is well-placed to advise schools about how best to create a supportive climate (see box).
"The first step is always language: play around with different phrases to describe the child's condition to find out which one they feel comfortable with," says Jane. "Always call it what it is."
Pupils and teachers need to think through how they will answer difficult or unkind questions before they arise. Some young people become extremely adept at quirky reposts such as, "Think of my face as modern art - my parents are hoping to make money out of me," or "Haven't you seen a disfigurement before? You should be more sociable."
"It takes some nerve, but it's so much more effective than an angry rebuff," says Jane. "Humour can be a great way of projecting the whole person, as opposed to just seeing someone with an unusual face." Another effective technique is known as "fogging", which involves responding to a malicious comment with a deceptively simple, "So?" or "And your point is?"
Jane confirms: "A neutral, measured response that queries the whole conversation can be extremely satisfying. The child with the disfigurement is likely to get the last laugh."
Such approaches are not going to be used by very young children, but teachers still need to be well-prepared, says Sharman Harral, head of the Phoenix School, a nursery and infant school in Bedford. A three-year-old girl at the school has Crouzon syndrome, a genetic disorder that means her eyes protrude out of her head.
Changing Faces came into the school before she arrived to discuss potential name calling, and the school sent leaflets to parents about the condition.
"We've only had one comment, and that has been about her big eyes," Sharman says. "But because we'd been trained, the teacher was able to reply, `Yes, aren't they beautiful'. We've learnt to comment on the comment, not on the disfigurement."
A boy with a large raspberry birthmark over his eye was less quick to settle in. At only three and a half years old, he was already self- conscious and refused to make eye contact with anyone.
"We knew not to look at him directly because he would just roll up in a ball," says Sharman. "Instead we made what we were doing so interesting that he wanted to come and join in."
In a larger setting, it can be harder to support pupils with disfigurement. The Central Foundations Girls School in Bow, east London, has approximately 1,400 pupils, including a Year 7 girl with Proteus syndrome, a rare progressive condition that affected Joseph Merrick, subject of the film The Elephant Man.
For Jean, it has meant that the bones in her face have kept growing. Her jaw sticks out giving her a speech impediment, her hearing is poor, she is blind in one eye and she also has learning difficulties.
"She looks very different," says Daniella Rutting, inclusion co-ordinator at the school. "It's quite hard to understand her, although she understands us."
When she was in Year 5, her primary got in touch with the secondary school and Daniella met Jean and her mother. "We knew it would be a massive challenge, but you can make it happen," Daniella says. All staff were given an information sheet about Jean before she visited the school, plus some photos, to remove any initial shock about her appearance. Jean is now getting on well in the school's nurture group, and has her two best friends in the same class.
Rebecca McKenzie Knight has lived through the staring and would now reject any corrective surgery. But she knows what it means to feel different. "I always felt that no one could really understand what it was like," she says. "Having a disfigurement can be a lonely experience but schools can make it easier by putting systems in place to help pupils"
How schools can help
- Meet the pupil before they start school and discuss how they will address difficult questions.
- Don't prepare pupils about a child's disfigurement before they arrive - it categorises them as "other" and may actually reduce social interaction. Instead, deal with questions as and when they arise.
- Brief staff. All teachers should practice their response to hurtful remarks.
- Avoid euphemisms.
- Do not discourage curiosity or staring - it will create a taboo and may stop a pupil being looked at altogether.
- Acknowledge any comments before moving conversation on to include the whole class eg: "Yes, Pete does have a birthmark. Does anyone else have a birthmark like this mole on my arm?"
- Get potential troublemakers on side by asking them to set a good example to the rest of the class. Drill things they can say to make the affected pupil feel more comfortable.
- Get the pupil with a disfigurement to imagine a difficult situation and come up with techniques to tackle it. Re-assess regularly.
- Contact Changing Faces for support www.changingfaces.org.uk.