One of the most difficult aspects of living with facial disfigurement is the constant fear that people are staring at you. And they are… then again they may not be.
The main point is that your ability to lead a social life is dominated and inhibited by YOUR perception that others will stare at you once you step outside your front door. I have lived with facial disfigurement for many, many years, and a part of me is on alert every time I get on the bus, or go shopping and on holidays. I’ve learned to live with it because I’m a lot older, wiser and contented. My face is my face. It shows people who I am physically, though not what I am as a person.
Taking that bus, going to the cinema and concerts are normal experiences for most people because they don’t lack (usually) confidence. From the perspective of the facially disfigured, these social experiences can be painful and we occasionally avoid them because we fear those prying eyes.
It has never bothered me when children stare. They’re naturally curious anyway, so when they spot me their eyes tend to fasten on to me with a sense of wonder, and their eyes almost asking, “hello, what’s going on here?” I usually smile back, a great icebreaker, and that ends the eye contact. Some have even come over to me and asked me straight out “what happened your face?” usually stroking their chins as they do so. It’s not threatening or hurtful and I’ll tell them the truth. That satisfies them and they toddle off.
Teenagers respond in a quite different way. If a few girls are walking together and one turns around and sees me she’ll usually whisper to her friends who will then look behind, stare at me and laugh. I understand part of that reaction, because it’s a juvenile response fed in part by a world that colours their perception of what is normal. Strangely enough, male teenagers don’t behave in the same way.
Adults, who should know better, are the most irritating. A few stare so brazenly that it can really annoy. I’ve developed a response now that usually works. If I realise one is looking at me I’ll let it pass; if it happens a second time, I’ll prepare for action; and when the third incident occurs I’ll lock him (and it’s usually a man) in a stare until he cops on I’ve rumbled him and looks away.
As a teenager I never met anyone who looked like me. I remember mum saying they existed but that they were probably kept at home. And she was right. Over the last 20 years I have met scores of facially disfigured survivors. I was not alone anymore. That helped, especially when I saw others had similar experiences – the constant staring, loneliness, fear, social isolation.
So, to those of you whose faces are free of blemishes spare a thought for the rest of us who dislike staring. So the next time you see me why not smile or say hello. I’m a human being just like you and I have feelings too.