One of the downsides of feeding the Internet Beast is that it places a very high, almost exclusive, priority on facile riffing about whatever the web's fixation of the second is, and a low value on going out and learning about ordinary situations in the living world, which is the fun part of being a journalist. That's why I was so excited to start to write for Mosaic, the London web site of science and health run by the Wellcome Trust, a large British charity. Earlier this year, I spent a few weeks, off and on, at the University of Illinois' Craniofacial Center, researching an article on facial disfigurement that will go up on the website, and here on my blog (and, possibly, in the Sun-Times) on June 13.
One of the great things about Mosaic is they run all sorts of additional links, videos and enhancements with their stories, and my editor there asked if this column, which I refer to in the Mosaic article, a look at how society views the disfigured and what their lives are like, were available online. I said it wasn't, but I could post it here.
So here is a 1998 column that shows how long I've been interested in this topic. When the story goes up, I'll probably strip off this little explanatory text out, so as not to confuse international readers arriving from the Mosaic site, and merely say:
This is the original Sun-Times column mentioned in Neil Steinberg's June 13 Mosaic story on the disfigured and society.
When I went to elementary school, there was a girl in my class named Cynthia Cowles, who had a deformed face. Her nose was smashed in, her eyes set far too wide apart.
She had many operations. The doctors would try to reconfigure her face to something approaching normal. She would disappear from school for a while, then return, freshly scarred. This went on for years.
She went through her ordeal with, as I recall, no support whatsoever from her classmates. Just the opposite. Kids are generally beastly, and we were free to be as beastly as we wanted to Cynthia Cowles, unencumbered by a shred of guilt or shame or remorse. Her deformity put her beyond the pale of sympathy.
I can't remember any specific unkindness. Tormentors tend to be forgetful. In fact, I didn't even recall that I was the ringleader, instigating the teasing of Cynthia Cowles, until I called my mother to ask her about it. She recalled that Cynthia Cowles' mother called her, when I was in first grade, and asked her to do what she could to control me. But that was difficult to do.
"I felt helpless," my mother said. "The things you were upset about, you'd open your mouth about."
Truth was, I was terrified of deformity. That's why I gave Cynthia Cowles such a hard time. I was so uneasy with deformity that I was on guard just flipping through the c's in the dictionary, because I knew under "contortionist" there was a picture of a person twisted into a pretzel, and I couldn't risk happening upon the sight unprepared. I would turn the pages slowly around "CO," steeling myself for the shock.
I've never quite figured out where this fear came from, but I suspect it was simple unfamiliarity. You tend to fear what you don't know.
Over the years, the fear went away. This job helps. After spending a day at the morgue, or watching a plastic surgeon perform a nose job, you don't jolt so easily. I can flip through the c's in the dictionary easily now.
All this came back to me last week, with the Sept. 21 issue of the New Yorker, which included a four-page Benetton ad featuring handicapped children. The first page is a gorgeous fashion shot of a boy with Down's Syndrome. Turn the page, and there is a two-page spread of a mother holding a boy whose hands are curled and jaw frozen by some sort of spastic condition. The mother cradles him lovingly.
And finally, the fourth page is a grinning boy who, well, you can't tell what's "wrong," with him, if anything. Which is clever, if intentional, because readers are left examining the happy, freckled face of this child, trying to jam him into a category.
Benetton, the Italian fashion designer, is famous for its jarring ads. They often are accused of taking advantage of graphic images to promote their label. But I think they should get credit for helping to extend the narrow boundaries of accepted "normality."
Had Cynthia Cowles, or someone like her, appeared in a fashion ad in the New Yorker in 1969, I think we would have treated her better.
Once I had been reminded of Cynthia Cowles, I couldn't let the matter drop without trying to make amends. I found her number and phoned her.
Wonder of wonders, she was glad to hear from me.
"I saw you on 'Oprah,' " she said. "You still play with your shoelace when you're nervous."
She's married, for the last five years, and lives in Ohio. I told her I was sorry for how I acted in school, but her memory, thank God, did not jibe with mine.
"If you were mean to me, there were so many other people who were so much worse," she said. "I recall you as being one of the kinder people. You were the one in eighth grade who came to visit me in the hospital -- you told me your mother made you come, but you stayed a half hour, very uncomfortably -- and brought a box of stationery."
There was no rancor. In fact, she had sympathy for me.
"You got teased for being fat, and got teased because you couldn't skip," she said, recounting how the gym teacher tried to drill me into skipping. "You were real good at galloping, but you couldn't skip."
I had never known what was wrong with her, so I asked.
"I was basically born without bone in my nose, and the front of my forehead was not closed," she said. "I'm hydrocephalic, which means my head is bigger than it should be, which put pressure on my brain."
She had more than 60 operations in school. "Now I'm done," she said.
We had a great conversation, with lots of laughing. She told a story about turning around and socking a kid who was teasing her; she was terrified because the assistant principal saw her do it.
"But he just gave me the thumbs-up sign and said, 'If you didn't I was going to,' " she said.
Socking the kid had been liberating for Cynthia Cowles. "My mother always thought if you ignored it, it would go away," she said.
And I must say, I felt liberated myself, from a guilt that had gnawed at me for years until, with a lucky assist from a magazine ad, I turned to confront it.
—Originally published in the Chicago Sun-Times, Sept. 20, 1998