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Cynthia Cowles’ face seemed frightening to her schoolmates. Her eyes were too far apart and her nose was flat, provoking fear in her classmate Neil Steinberg. So when other boys teased her he joined in, which led to her mother phoning his mother to call on Neil to stop.

Steinberg, now a columnist with the Chicago Sun-Times, has written a fascinating piece for  about the facially disfigured, their alienation from society, and the pressure we put on those whose faces don’t conform to what we believe is normal. He is also quite candid about his own fears as a child and adult on meeting the disfigured. The essay provides a refreshing perspective on a subject that is finally coming into the open in a way it couldn’t in the past.

Teratophobia is the fear of monsters, bearing a deformed child or disfigured person. I came across some examples of it when people used to run away in horror when they saw me. Because the facially disfigured look different they strike fear into some people, so that first reaction when they meet you is often one of surprise and shock; so much so that some people say unpleasant things or openly mock you. They stare, sometimes out of curiosity, often unaware that you can feel those eyes drilling into you.

Steinberg explores why distorted faces are so frightening, and quotes a study by psychologist Irvin Rock who demonstrated that if you flip pictures of familiar people upside down the mind reacts with alarm. Remove the eye or nose, or add scars, burns, etc., and register the horror on the beholder.

Steinberg recalls having to steel himself for his first visit to the Craniofacial Center in Chicago, grabbing a cup of water and sitting down in case he might faint – this before he had even met one of the patients. Fear can do that. On another visit he met a patient missing parts of his face. While he made contact and spoke to the man, he reports that 30 minutes later he was trying to process his feelings and found the word ‘harrowed’ best described it. “I’m no longer a child but an adult, a newspaper reporter who has spent hours watching autopsies, dissections in gross pathology labs. I was expecting this; it’s what I came here for. What about his face was so unsettling? Maybe seeing injured faces compels an observer to confront the random cruelty of life in a raw form. Maybe it’s like peeling back the skin and seeing the skull underneath. like glimpsing death. Maybe it touches some nameless atavistic horror,” he writes.

In an interesting passage on the history of facial disfigurement, he notes that duelling scars in 19th century Germany were so fashionable that young men deliberately wounded themselves. Steinberg traces the evolution of plastic surgery to the arrival of syphilis from the New World in the 1490s, but the real advancement came in the wake of World War 1 when tens of thousands of wounded returned home disfigured. Some faced isolation or were viewed as social pariahs. For example, some park benches of Sidcup in England were painted blue to warn locals that they might be used by patients having their faces rebuilt at Sir Harold Gillies’ hospital, lest they be offended.

Many US cities had so-called ‘ugly’ laws crafted to reduce begging, but including as in Chicago, “the diseased, maimed, mutilated or in any way deformed”. Hard to believe then that the immigrant Irish were mocked for being ugly in the 1850s, but a few decades later “showed a marked improvement in their physiognomy”. However, as Steinberg notes, “Irish faces didn’t actually change; the American public’s antipathy did”.

In telling my own story about coping with facial disfigurement I emphasise the challenges I faced, and my struggle to cope. Yes, staring, abuse and name-calling are hard to endure, and I found building a social life difficult – and sometimes impossible. The danger is you can cut yourself off from the outside world, be afraid to step outside and take part in normal social activities – shop on your own or with others, go dancing, to the cinema, etc. Simple things others take for granted can be a real challenge.

Too often I still come across people who live hidden lives, afraid to show themselves to the public. They live reclusively, in fear of how others will react to seeing them in the street. Some have endured appalling experiences, and it’s the fear this might be repeated that holds them back. Fortunately, I was lucky my parents never tried to hide me away.

Not so lucky was Debbie Fox, born with a massive cleft that turned her face inwards. Her parents decided society would never accept their child so they kept her at home. At the age of eight she saw her face in the mirror for the first time and screamed in terror. In her autobiography A Face For Me, she recalls: “So that was what I looked like. That was why I couldn’t play with other children, go to school, go to church, run into the store to buy candy or an ice-cream. All these things had been forbidden to me.”

In a telling episode about the media’s less than praiseworthy role in educating readers about the facially disfigured, Steinberg writes that Good Housekeeping magazine ran a feature about her, illustrating it with a picture showing her only from the back. Obviously a picture of her face might offend the ugly minds of readers.

That was back in 1970, so it’s good to know that the media is a lot more welcoming now. When Turia Pitt was badly burned in an Australian bush fire, the biggest selling women’s magazine there ran her picture, an event that was quickly splashed across world media.

Steinberg says there are conflicting views on how far society has come in accepting those of us whose faces look different. The world has changed much since I was burned 59 years ago. We live in an Information Age that simply didn’t exist back then. For example, I grew up without ever meeting someone with a facial disfigurement, or who looked anything like me.  This lack of awareness that others were going through the same life journey, often shielded by their parents or shunned by their local communities, coloured my thinking and fed my insecurities. I felt I was the only one and that no one could understand my living nightmare.

To finally meet others who were also disfigured was a welcome relief. At last here were people who understood me. I first met Christine Piff, the founder of Let’s Face It, back in the 1990s when she spoke at the launch of a branch of the charity in Cork. Part of her face and one eye were removed when she was diagnosed with facial cancer and she wears a prosthetic to cover the void, but her bravery, honesty and love of life were infectious. She gave me a copy of her book, <em>Let’s Face It</em>, recounting her experiences. But aside from James Partridge’s Changing Faces and the occasional article in British newspapers, there was very little media focus on the subject, though RTE television here in Ireland rather bravely ran a programme on the facially disfigured in which I appeared.

That changed in the past decade. Katie Piper, who was badly burned in an acid attack, has written several books on her own challenging life; was the subject of a brilliant documentary that showed her rehabilitation, both physical and psychological; and she now fronts her own TV series and runs a charity foundation helping burns survivors.

Gradually the media is taking more of an interest, although there is a long way to go in terms of changing perceptions and ending casual denigration of the disfigured. We need to change both minds and attitudes. In a world obsessed with beauty and body image, and the glorification of plastic surgery for all the wrong reasons, it’s important that we educate people to be more inclusive and less judgmental.

The growth of social media is both a curse and a blessing. Online bullying by usually anonymous perpetrators is a serious problem, but there is also a hugely crucial benefit – for the first time we need not feel alone.

I started http://hickeysworld.com to talk about facial disfigurement. Some of the blogs have been republished in newspapers, and subjects I have raised have led to radio interviews. I always make myself available to those who are dealing with their own demons – adults suddenly becoming facially disfigured, parents trying to cope with their disfigured child. I address topics such as loneliness, isolation, the abuses and humiliations I endured. All the while I try to provide hope and positivity. After all, I did meet my future wife and we now have two grown up children.

Steinberg’s article is a fascinating read and is a splendid overview of a very difficult and complex subject. Oh, and he eventually met up with Cynthia, the girl he teased at school. He apologised and then discovered why she looked different: she was born with a bone in her nose and is hydrocephalic. Good for him.

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