By Jennifer Schenkel
Young People's Press
At the edge of the playground, a child stands watching her classmates laughing and playing jump rope. She has not been asked to play. The other kids simply assume she can't. It doesn't matter that she loves the same things as they do, that she listens to the the same music and watches the same TV shows.
Many kids don't give her a chance because of the way she looks.
Novelette Munroe, 12, has epidermolysis bullosa, a rare skin condition that causes severe blistering and bruising. Most of her body, including her face, is covered with painful blisters. Her fingers are fused together, though she can feed herself. And to some of her classmates' surprise, she can even jump rope.
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Photo by Richelle Forsey |
"Some people are afraid to touch me. I wish people would just ask me about (my condition)," Munroe says, stroking an orange cat nestled at her side. "It's not catching (contagious). You could even hug me," she adds with a shy smile.
Looking different in a beauty-obsessed culture can be particularly trying for adolescents. Teen magazines set impossible standards of beauty and perfection. The inability to meet this narrow definition of beauty can be socially devastating for an adolescent with a visible disability, particularly when the face is affected.
Folklore also feeds negative stereotypes about people who are considered unattractive or different. When Paul Bernardo, a convicted sex killer, was arrested, many people reacted in disbelief. How could such an attractive person have committed such heinous crimes_
Given these deeply ingrained stereotypes, it is no wonder that a facial disability can be isolating.
According to AboutFace, an international organization that provides support to people with facial differences, there are over 65,000 people living in Canada today who were born with such a condition. Each year, 40,000 people develop a facial difference through accidents, burns, or cancer.
AboutFace, which now has over 6,000 members, urges people to recognize the beauty of difference. The organization makes a point of using the word "difference," rather than "disfigurement" which has a negative interpretation.
Colleen Wheatley, 15, credits her parents and her involvement with AboutFace for her incredible self-confidence. Wheatley, an outgoing Grade 10 student who loves basketball, was born with hemangioma or birthmark. Excess muscle tissue covers almost the entire right side of her face.
"I hate when people stare," she says. "If you think you're being subtle, you're not. Believe me."
Her advice for anyone being teased about their appearance is to talk to friends, family, or a social worker. Mature beyond her 15 years, Wheatley refuses to see her face as a handicap.
"Yes, it's hard sometimes, but my face allows me to see things other people can't," she explains matter-of-factly. "Be loud and proud and wear your face with pride."
Lorna Renooy, Communications Director for the Toronto chapter of AboutFace, feels that good communication begins in the home. "If you don't discuss the way a child feels about their appearance, they may interpret the silence like it's something shameful. That can be very damaging," she notes.
Renooy comments that parents, too, need support. "I've had parents call the centre who are scared because their children want to discuss their face. They're afraid of what they might hear and don't know how to support their kids," says Renooy. "The best support is communication."
Dr. Arlette Lefebvre, a staff psychiatrist at The Hospital for Sick Children in Toronto, agrees. She has spent her career helping children with visible disabilities.
Lefebvre says the best way to cope with taunts is to develop a strategy. She believes that adolescents who are prepared to answer questions about their appearance have an easier time dealing with insensitive remarks.
"You don't have to be a passive recipient of stares or rude remarks," Lefebvre says from her office at Sick Kids, which is plastered with photos of, and drawings and stories by her young patients. "You do have a choice. You can smile, you can educate, you can ignore, or you can use humour."
Of course, this is always easier said than done for young people facing the intense peer scrutiny of adolescence.
For twelve-year-old Munroe, the road ahead is a difficult one. As she grows older she will endure more painful surgeries. And she will continue to confront people do not look beyond her different facial features to see the real person within.
But she believes that telling her story represents the first step in educating the world to look beyond the superficial and to appreciate the splendour and beauty of difference.
Jennifer Schenkel is 24 years old.
