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
Cynthia Ungemach died Dec. 31, 2018.
Cynthia Ungemach died Dec. 31, 2018.
I remember all those Benetton ads.ReplyDelete
Not only didn't they do anything for Benetton's bottom line, but some of them [not the one you showed], offended so many people that they stopped shopping there.
Kenneth Cole tried the same crap & got the same reaction & lost business.
I admire the sentiment—why must every model be perfect?—though I can see customers reacting poorly, I'm not sure how they could be offensive. And remember, there is more to life than the bottom line. Showing people with differences show up in fashion ads, I would argue, makes them more "acceptable" to those who might otherwise put stumbling blocks in their already difficult roads. It seems odd that you would focus more on Benetton's bottom line than they did.ReplyDelete
Both of you were very lucky. She was lucky to have such a great mom (maybe/likely both parents) who both stood up for her and taught her to stick up for herself, let alone saw her threw the hospital. You were lucky to have such a great mom that she forced you to visit her in the hospital. Believe me (not just from experience but from research on the subject), most bullies who are cruel to the point that the victim's parents are begging the bully's parents to help don't get this kind of happy ending. (Then again, most don't seek it).ReplyDelete
A-N-A- that's saw her "through " itDelete
But you are right about sometimes talking to the bullies parents doesn't often help.
Now that's a better tone, A/N/A.Delete
Bravo! Confronting your guilt probably doesn't always turn out so well, but it's a hell of a lot better than trying to buy it off.ReplyDelete
A very moving story. I think we all fear the handicapped or disfigured to some extent. You did the right thing and have a good mom. Maybe if the teacher had her explain to kids what was wrong exactly and how terrible the surgeries were it would be different. Today sometimes they'll have kids explain challenges in class and are tougher on bullying.ReplyDelete
Funny how guilt works out. In my late thirties, I got a phone call out of the blue from a former junior high classmate who saw my byline in the newspaper and wanted to apologize for having given me such a hard time at school.ReplyDelete
Not only did I not remember his having done so, I even had served as his campaign manager when he ran for class president (which he had forgotten). OTOH, I'm sure there are former classmates I barely remember who hate my guts to this day, just as there are undoubtedly classmates whom I still remember as jerks who barely remember me. Memory is a tricky thing.
Maybe all this is doing the right thing, moreso than guilt.ReplyDelete
I'm glad you got in touch with her, Neil., I think it's something we all have the impulse to do to those we have wronged, and your story had a really satisfying ending to it. Gotta say, I love that your mom made you visit her! Rockin' mama.ReplyDelete
I'm not a cruel person, but when I was a freshman in HS, I imitated a classmate's limp in front of my two best friends. No one else knew, but I felt terrible about it for years. (One of his legs was considerably shorter than the other.) A few years ago, I looked him up. Sadly, he had passed, but by all accounts had a happy life, and was a world champion kite flyer, of all things. He never knew I had mocked him, and for that I am grateful, but when I recounted the story on Facebook, I lost a good Facebook friend, who couldn't come to terms with me being so cruel to someone disabled, although it was 40 years ago.
Your writing hits those hidden places within us all. Thank you.
Speaking of facial deformities, there's an obit in the SunTimes today about someone working with people who had a Miller's syndrome facial deformity, photo included. They helped with awareness.ReplyDelete
Oh nice pic up for tomorrow. Belle of Beauty and the Beast at Magic Kingdom, Disney. I wonder what that will be about.ReplyDelete
That got booted to Friday (I wrote two columns today, paper just flopped which one it's taking. I try to be in synch).Delete
Well you are certainly pro-active.Delete
I see the Israeli flag now. That will always be an interesting topic.ReplyDelete
I'm glad that the disabled are provided greater opportunities to integrate into every day life. When I was a child, it was common for families to shelter those with disabilities, perhaps out of a sense of protection. An isolated existence may be "safe" from the disapproving or shocked stares of strangers, but limits the experiences open to those with disabilities, and does nothing to challenge societal views that may be less than accepting.ReplyDelete
As a teenager, I was visiting a local university while taking some advanced placement tests. This university had a relatively new and modern campus, designed from the start to be universally accessible. I noticed a large number of disabled students that day, but was unprepared while having lunch in the cafeteria when a spastic individual with an attendant was wheeled past my table. My visceral reaction was stomach turning, and I was unable to eat for several minutes. While initially I was angered to be subjected to this young man's horrifying condition, my reason quickly returned and I was able to acknowledge that he not only had every right to co-exist in this public space, but that he was a very brave soul to do so.