When a child faces life with a physical disfigurement  

Written by Lawrence Kutner   

Published in The New York Times – Thursday, October 1^st, 1992 

Although Ashleigh and Grace Howe are 7 year old identical twins they’ve always looked quite different from each other. Grace Anne was born with several congenital defects. The bones on the left side of her face did not form completely. She was born with a cleft palate and without a left ear.

Despite 7 reconstructive operations she still doesn’t look like her sister or her classmates.

“No child has ever been nasty to Grace Anne because she is different,” said Dawn Howe, the girls’ mother, who lives in Quantico Va. She admits that her daughter is often stared at by children who don’t know her. Adults will sometimes say things that are insensitive and ignorant; a man recently asked if the girls’ dance teacher would allow Grace Anne on stage during a class recital. Ms Howe told the man that there was nothing wrong with her daughter’s legs.

A growing number of children are surviving accidents, illnesses and congenital defects that a few decades ago would have been fatal and that today leave them looking different from other children their age. That means that most children at some point will have a classmate who’s been badly burned, is bald from cancer chemotherapy, is missing parts of the body or is disfigured in some other way. How children respond to a child who looks different is largely a function of their age, the type of disfigurement and how the adults around them react.

Infants and toddlers seem to take physical differences amongst their playmates in stride. Scars or a wheelchair may be curiosities but are not viewed as things to be feared or to become upset about.

“There may be initial unwarranted fear of contagion among some preschoolers,” said Dr Stanley D. Klein, a clinical Psychologist in Boston and a publisher of Exceptional Parent Magazine, which is aimed at the parents of children with disabilities. For example, 4 year old children may be worried that playing with a bald child might cause them to lose their own hair.

“But talking to them about what happened to that child helps their fear go away,” Dr Klein continued. Children this age are uninhibitedly curious about people who look different. A 5 year old who has a playmate who has a cleft palate brushes his teeth or whether burn scars are painful.

Betsy Wilson, the Director of Let’s Face It, a national organization for people with facial deformities and their families, which is based in Concord, Mass, lost her jaw to cancer 20 years ago and has since had reconstructive surgery.

“Parents are embarrassed, but kids will ask me why my face looks funny,” Ms Wilson said. “I tell them that I was very sick, that this is what the doctors did to make me better and that it isn’t painful. That honours their curiosity and doesn’t tell them that it’s bad.”

Older children often face more difficult problems with others’ reactions. Jill Krementz, the author of, ‘How it Feels to Live with a Physical Disability’ (1992, Simon and Schuster) found that while many of the disfigured children she interviewed received support from their peers a few were teased mercilessly or even attacked by schoolmates because of how they look.

“The only children who had a really painful time from their peers were the ones who had facial disfigurements,” Ms Krementz said, adding, that children who are missing limbs or have other disabilities are more likely to receive comments on how well they are doing.

“But because the other kids don’t know what to say and are fearful of saying the wrong thing they sometimes avoid the disabled kids altogether.” She continued.

Since adolescence is a time when all children are more sensitive about how they look it can be particularly trying for children who are disfigured.

They are bombarded by messages on television and in magazines that equate physical beauty with success, popularity and attractiveness. They are told (and believe) that even small defects, like a pimple, can lead to social rejection. They long, simply to blend in with their peers.

“One of the hardest parts of facial disfigurement is that you lose your anonymity,” Ms Wilson said. “You have no control over people staring at you. We need, as parents, to get children to see the person behind the face.”