EmailEmail
PrintPrint
Panelists discuss 'inner beauty'
Forum spurred by the Post-Gazette's 'About Faces' series
Tuesday, January 11, 2011

One of the people attending Monday night's forum at the Heinz History Center asked the panelists how they learned to live with faces that were disfigured or so different from what most people would consider normal.

Kathleen Bogart's answer was simple: "By talking about it."

More than 200 people gathered to engage in the discussion, sponsored by the Pittsburgh Post-Gazette and spurred by staff writer Mark Roth's special series "About Faces."



Ms. Bogart, a graduate student in psychology at Tufts University, was born with Moebius syndrome, which has paralyzed most of her facial muscles.

"As a child, I didn't really want to think about it or talk, even to myself, about my condition," she said. "Then I learned more about it and studied it. I think that's a good way to start your acceptance process. And then talking to other people about it. Someone close to you. It can be refreshing to talk about how other people perceive you."

Other members of the panel included Peter Townsend, who was born with neurofibromatosis, which produces bumps all over his face and body; David Roche, who was born with a disfigurement on one side of his face; Connie Culp, who was shot in the face by her husband and became the recipient of the nation's first face transplant; and Joseph Losee, a plastic surgeon who specialized in facial reconstruction and leads UPMC's newly approved face transplant program.

PG VIDEO: 'ABOUT FACES' FORUM

The 90-minute program, with Post-Gazette executive editor David Shribman serving as moderator, proved to be thought-provoking and upbeat. The panelists stressed how important having a sense of humor was and used laughter to make a number of their points.

"I've learned my face is an incredible gift," said Mr. Roche, who has made his experiences work for him as an author and public speaker. "Not the kind of gift I was excited about, but it's a gift because I've been forced to find my inner beauty.

"And I've learned that my experiences are universal experiences. Everybody feels disfigured, whether it's on the inside or the outside. When you step out of the shower in the morning and look at yourself in the mirror, you know what I'm talking about."

"People do judge you by your looks," Ms. Culp said. "But I'm not going to live in an 8-by-10 room. And that's what people want to do with us, hide us behind doors. ... Well, I'm not staying behind doors. I'm going to go out and I'm going to have fun. If you don't like looking at me, walk the other way."

The panelists said it also had been important for them to have the support of family and friends, as well as determination and patience. Mr. Townsend, who worked as a probation officer in Pittsburgh, said he had found that acceptance isn't that hard to achieve.

"Once you start talking to somebody," he said, "they have a normal appearance."

The conversation also touched upon how our faces shape our personalities, whether beauty really is skin-deep -- the panelists agreed that it isn't -- and the role of cosmetic surgery in society.

"The face does form our first impressions, but once we populate our knowledge with the rest of the person, the face recedes to the background," Ms. Bogart said.

Mr. Roche told the audience he considered his face "a birth difference, not a birth defect," and said it's important for people to encourage others by example.

"My face is unique, but my experience is universal," he said. "We have something to bring into the world to teach you all how to find your inner beauty, just like we had to find it. You have to find it, too."

Sheila Cavalette, 50, and Sondra Cupini, 40, came from Weirton, W.Va., for the forum, they said, because they were inspired by the series in the newspaper.

"I also, in a way, wanted to support them," said Ms. Cavalette, a nurse. "I've always been a softy. When I was younger, I'd tell my mom, there was a girl or a boy with a certain problem, and my mom would tell me to be compassionate.

"I wanted to see how these people dealt with their lives and hear their stories."

"They're courageous people," said Ms. Cupini, an occupational therapist. "They prove that whatever problems you think you have, you really don't."

Dan Majors: dmajors@post-gazette.com or 412-263-1456.

First published on January 11, 2011 at 12:00 am