At a petrol station today the attendant asked me what happened to my face. It’s been a while since someone came straight out and asked me but I told him it was an accident. Move along now, I thought.
Unfortunately, he didn’t leave it there. His curiosity piqued, he lobbed more questions at me. Where did my chin come from? When did it happen? How did it happen? Who was to blame? That last one really threw me.
At this stage I was slightly miffed, particularly as there was a queue forming behind me and it was not the time or place for me to be questioned so personally and publicly. When I related this to my wife later she responded that I should have told him to get lost. But, that’s not me.
Now, I’m pretty open about relating my story. I’ve done it on TV and radio many times, written articles, spoken at meetings, blogged about it, etc. In fact I was on RTE Radio One’s Liveline programme yesterday doing just that (more about that later). I am also willing to open up to friends and colleagues who want to know. Until I started to write and speak openly about the fire that changed my life, few of them had ever asked the question.
However, people who don’t know me sometimes think they have the right to ask. And they do. Sometimes in shops, on the street (I’m sometimes stopped just so they can pop the question), cafes, or wherever I happen to be.
Like today’s incident, I never quite know when someone is going to intrude into my space uninvited and feel they are entitled to ask “What happened your face?” This was the question a bank manager once asked me when I went to see him for a loan. Not what I wanted the loan for, nor even how much I wanted.
I’m cool about children staring or pointing at me, asking what happened my face. It’s natural and doesn’t bother me. Unfortunately, in some cases the mother takes one look at me and drags her child away as if she’d seen a monster. Sometimes her reaction is one of embarrassment and she hurriedly guides the child away. As I get older that has happened less frequently.
For some reason, and one I can’t fathom, adults can say or do the most offensive things when they encounter those of us with a facial difference. They stare repeatedly, point, drop their jaws in astonishment and occasionally say the most hurtful things. Why? Why would you humiliate someone who is disfigured and who may be struggling to lead a normal existence without being made to feel like some kind of freak?
This brings me back to yesterday’s Liveline appearance by Liam Soffe, whose five-year-old daughter Elizabeth was badly burned in an accident. He recounted the appalling comments from adults, like “at least she won’t have to wear a Halloween mask”, or the time they were refused service at a supermarket till because his daughter’s appearance was “scary”.
He worries about his daughter’s future. “The worst part is that my daughter will have to deal with this her whole life, every single day, in every room she will walk into.”
Unfortunately, I had to face just that. As I got older my problems and social isolation grew. I’m hopeful that Elizabeth’s experience will be better, partly because there is support there for her now that wasn’t available when I was younger. I didn’t know any children or adults with facial differences. The only people I knew with facial scars were villains in TV shows or films. They reinforced my own fears about adults who would meet me on the street and I was terrified of what lay ahead.
Adults can be unthinking in what they say or how they react when they encounter us for the first time. Their thoughtless words and actions are hurtful not alone to the facially disfigured but also their loved ones who only want the best for them.
Just like trolls on social media, some adults delight in making offensive or cruel comments to disfigured children or their parents. Their lack of Christianity and empathy is incredible. We can only hope that by highlighting these incidents, and publicising the effects of these actions on disfigured children and adults, it will have a beneficial effect.
However, the last thing parents of facially disfigured children should do is curtail their social or sporting activities. My father took me out of hospital because he felt I was becoming institutionalised. In fact it was suggested that I be placed in some kind of home, so bad were my injuries back then.
I’m glad he decided the best place for me was with my family.