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Cherubism

Cherubism is a rare genetic disorder that causes prominance in the lower portion in the face. The name is derived from the temporary resemblance to cherubs in Renaissance paintings. The appearance of people with the disorder is caused by a loss of bone in the mandible which the body replaces with excessive amounts of tissue. In most cases, the condition fades as the child grows, but in a few even rarer cases the condition continues to deform the afflicted person's face.

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Last night's television: The brutal truth in our reflecting gaze
From Independent, The (London), 8/7/03 by THOMAS SUTCLIFFE

One of the advantages of television is that you can gawp as much as you like without anyone being able to see you. So - unlike the London pedestrians caught on a concealed lapel camera in What Are You Staring At? - we could gaze into the wreckage of Barbara Alvez's face without fear of being spotted doing it. Their eyes bounced and flickered like pin-ball flippers - at first gripped, then recoiling from their own fascination, then slamming back again to see if what they had seen was for real. And, apart from one oaf, who did everything short of erecting a peep-show for Barbara to poke her head through, most of them did their best to act as if they'd seen nothing remarkable. "I don't want people to stare", Barbara said, "I want people to look a bit blank". But she didn't want this kind of blankness - a grim determination to keep the curiosity and shock off the face. She didn't want people to pretend she wasn't there - she wanted them not to notice that she was.

To achieve her wish Barbara had turned to Ian Hutchinson, a plastic surgeon who specialises in facial reconstruction, but Duncan Staff's film also offered a counterpoint to his straightforwardly mechanical resolution to the problem. Vikki Lucas (below), whose face has been turned into a kind of cartoon by a rare genetic condition called cherubism, took the view that it wasn't her who had the problem, but society at large. Instead of surgically changing the shape of her face, she argued, what truly needed a surgeon's knife was "people's deeply engrained attitudes". Any other form of treatment, in her view, was merely cosmetic - and though she never had a formal face-off with Hutchinson she was consistently presented, here, as the philosophical alternative to his hands-on approach.

Her self-belief and resolution was admirable. But if she genuinely wants to be treated like anyone else, neither privileged nor disadvantaged by her condition, then you'd also have to add that she's kidding herself. What she seeks to do is rewire the human psyche, erasing the evolutionary programming that enables us to scan faces with an automatic, indifferent efficiency, and replace it with a kinder, gentler software.

Unfortunately, the answer to the programme's combative title wasn't difficult to give. What are we staring at? We're staring at you, actually, because a million years of neural tinkering has made us experts at discrimination. We're so good at detecting subtle differences that when we encounter really obvious ones the system freezes for a moment. This doesn't legitimate any unkindness or underwrite any injustice - and we're perfectly capable of expanding our notion of what the norm is. But it will be achieved against the grain of our biology - and it's hardly surprising that quite a few of those who suffer from facial difference, to put it as neutrally as I can, might opt for a surgical short cut to social acceptance. There was something strikingly solipsistic about Lucas's implication that the solution that was best for her would be best for everyone else too.

Ian Hutchinson didn't exactly make for a comfortable champion - or one easy to acquit of the charges of surgical arrogance. He was altogether too fond of talking about the "unconditional love" he received from his patients, and he came across as a bit gung-ho in his clinical attitudes. "I'm prepared to take on something that could go drastically wrong", he said at one point, explaining how it was that he'd become point-man for certain kinds of facial surgery.

His commissioning of a fine artist to commemorate his work - with paintings made before, after and during the surgery - also smacked of self-publicity. But the final sequence - in which Barbara sat up in bed and wept tears of gratitude for the restoration he'd performed was very difficult to contradict. He couldn't get a knife to human instincts or casual prejudices - but, in the absence of that, he'd done a pretty good job on her upper jaw, and for her at least, the world was transformed.

Copyright 2003 Independent Newspapers UK Limited
Provided by ProQuest Information and Learning Company. All rights Reserved.

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