SIRI AGRELL
From Monday's Globe and Mail Published on Monday, Apr. 30, 2007 6:39PM EDT Last updated on Tuesday, Mar. 31, 2009 10:44PM EDT
When Barry Strader was a teenager, he scribbled insults in a black book so he would be ready with a comeback if someone made fun of how he looked.
Born with Crouzon's syndrome, which caused the bones in the top of his face to grow larger than those in the bottom, Mr. Strader developed a sense of humour to counter the teasing he faced each day in public.
So when film critic Roger Ebert announced last week that he "ain't a pretty boy no more" after having a section of his jaw removed during cancer treatments, Mr. Strader knew just what he was dealing with.
"Normal's such a misunderstood word," said the 48-year-old, who now works in the office of Ontario Premier Dalton McGuinty. "By going out and challenging the boundaries a little bit, it's helpful for everybody."
Mr. Ebert's first public outing in eight months came last Wednesday at a Chicago film festival, against the advice of friends who warned him that people would take unflattering pictures.
Cancer of the salivary gland had required doctors to remove a segment of Mr. Ebert's jaw bone, and led to complications of surgery and a tracheostomy. The critic cannot speak, but decided to return to his passion and his job - watching movies.
"I have been very sick, am getting better, and this is how it looks," he wrote in the Chicago Sun-Times.
There are roughly 1.5 million Canadians whose faces have been changed by fire, illness, accident or fluke of genetics and who must, like Mr. Ebert, meet co-workers, clients and members of the public each day at work.
Judy Maus, 58, decided to take early retirement from her job shortly after a devastating bike accident in 1999. The fall ripped apart one side of her face, her shattered sunglasses mutilating one eye and the side of her mouth.
"I was really proud of my appearance and took great store in making sure I looked good," she said from Vancouver, where she is now a writer of children's books. "So this was catastrophic for me. I did look like a freak."
Anna Pileggi, the executive director of About Face, a Canadian organization for people with facial differences, said some of her members have lost jobs or seen their responsibilities drastically reduced when they returned to work after a disfiguring accident or illness.
Employers, she believes, should allow individuals to decide what they can and cannot handle. A bank teller who loses a nose to cancer might not be ready to face customers, but could work in the office until his confidence develops.
"Don't assume that because he's lost his jaw to cancer that he's not interested in talking to people," she said. "He just wants to be given the same opportunity that he had before."
When reintegrating into a workplace, Ms. Pileggi says, some people prefer to inform co-workers personally about their condition, while others appreciate an e-mail sent out to the office. It's often helpful for some co-workers to visit the individual before they return to work.
More workplaces will have to confront this type of situation over the coming years, Ms. Pileggi believes.
Facial cancer is the seventh most prevalent form of the disease in Canada, she said, and has a low mortality rate, meaning that more people will return to work after having a nose, ear or other facial feature removed.
"There was a time when it wasn't even an option," she said. "We're getting better."
Patrick McCarthy, 54, had to recalibrate his own expectations for work after suffering a stroke in 2003, while walking his dog.
One minute he was a high-functioning workaholic who did public relations for the Toronto Zoo, the next he was unable to speak.
"When your profession is communication, you're like, 'Oh God, what's going to happen?' " he said.
Unable to return to the zoo full time, Mr. McCarthy now works occasionally at the Hockey Hall of Fame, where he tries to address the misperceptions of co-workers and customers who often talk to him as though he were deaf or slow.
"If you're going to have a longer conversation, you say, 'Look, I've had a stroke,' so they know why you're speaking slowly," he said. "If you're up front, most people are very good about it."
Just as people adjusted to his speaking patterns, Mr. McCarthy believes they will adjust to seeing someone whose face has been altered by disease or surgery, like Mr. Ebert.
"Just don't say something stupid like, 'You look great,' " he said. "They don't want to be around phony people. They've been through enough."
Saving face
The non-profit organization About Face represents some of the 1.5 million Canadians with facial differences. Executive director Anna Pileggi offers suggestions for everyone else.
It's rude to stare
"It's okay to look. But avoid staring and looking startled."
Don't overcompensate
"Some people will start talking loudly because they assume that, because you've lost your jaw, now you can't hear."
Nobody's hero
"The other thing people get a lot of is, 'Oh you're so brave, you're so courageous.' People don't actually want to hear that."
No suggestions, please
"One other common mistake is to say, 'Why don't you try make-up to hide that?' "
Don't shush the kids
"That's a common thing. Just tell your child it's not nice to stare and that you'll talk later."
Siri Agrell
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