Disfigurements 

Leo Gormley was burned in a fire, and Nev Thompson has Apert's syndrome. In this video, Leo and the family of Nev share their views on how to deal with a disfigurement.

Handling reactions to facial disfigurement

Transcript of Disfigurements

So the accident happened when I was doing a school holiday job

for a local watchmaker.

I cleaned his clocks and thoroughly enjoyed it,

but in order to clean the clocks I had to use about a pint of petrol.

That was in a can, a tin can sat on my knee, and it ignited.

I fell off the chair and the petrol went on the concrete floor.

The whole place was engulfed

and both of us had to try and get out of the building.

For a long time I wasn't able to see what I looked like.

There were no mirrors in the ward.

Eventually, when I did get to a mirror,

I didn't think it was as bad as everybody seemed to think,

so I think in a way I was OK with it

because I was expecting much worse.

Our son Nev, who's now five and a half,

was born with a condition called Apert syndrome,

and it goes with three main parts to him.

His head is large and looks a bit different.

His fingers are fused together and he's had surgery to release his fingers,

but he's got restricted movement in those.

His feet, his toes are webbed and quite deformed.

That's what Apert syndrome is.

There are perhaps over one million people in the UK now

who have a disfigurement to their face or body.

It's still relatively unfamiliar to people

and it attracts a lot of attention

and somehow people's social norms seem to disappear

when they meet somebody who looks different.

And whilst most often it's just human curiosity

that draws people to look,

perhaps to make comments, perhaps to ask questions,

it can still feel very intrusive for the person who's receiving that.

For somebody to look, it's absolutely normal.

If they choose to look away, so be it.

Sometimes I catch people sneaking a look and trying not to be noticed,

so you might be on a train and an adult might have clocked Nev,

maybe his face or hands or whatever,

and they'll be looking over and then trying not to,

but they've clocked something that's different and really want to look.

That's when I feel most awkward about it because it's not quite obvious enough

for me to say, "You're looking" and embarrass them,

but at the same time I'd rather they just didn't keep doing that.

The classic one is "Do you mind if I ask you?" I don't.

I don't mind at all

because if I were me I would want to know.

And people genuinely want to know.

To me it's like "How did you break your arm?"

Somebody who has developed a positive sense

of themselves, of their identity,

has a positive belief in their future,

what they can expect, what they are capable of,

that can all help someone to live fully

and live a very satisfying life.

I felt a great sense of loss.

At the time I wasn't quite sure what I'd lost

but in trying to come to terms with the whole thing it becomes quite clear

that I thought I'd lost my looks, which I had.

I was quite a good-looking kid.

I can remember thinking, "I will never, ever get married."

"I'll never have kids."

"Nobody's going to like me."

And ultimately I felt incredibly sorry for myself.

The defining moment for me in coming to terms with it

was simply sat at home in the chair thinking,

"I'm either going to stay in this chair for the rest of my life,

I'm going to go to the nearest bridge and throw myself off it,

or I'm going to get up and get out and get on with it."

And there really wasn't an option.

I had to get up, get out and get on with it, which I did,

and, by God, am I happy I did.

I'd spent a few years thinking,

"I'm never going to be attractive to girls. I'll never get a girlfriend."

But once it started to happen,

then you understand fully that maybe you're not as bad as you think you are,

you don't look quite as bad as you think you are.

And I think it's about that process of being normal, behaving normal,

that if you can go out with a girl,

you walk up the street holding a girl's hand,

then it leads to that normality, that sense of normality.

For Nicky it was, I think, even more normal and natural

because we felt right from almost day one.

And it was just the most...

She'll kill me for saying this, but it was like winning the lottery

without the money.

We ask Nev. As he gets older, we've...

Now if someone's interested and it's an obvious situation

where you've got a choice of discussing it or not,

I'll now say to Nev, "Do you want to explain about your difference?"

"Do you want to explain about Apert's?"

Mostly he says no, but the other day, when he'd just started Year Three

and we said, "What might you say if somebody asks you about your fingers?"

he said, "I'll just tell them that I've had operations."

I thought, "That's great. We've never said that. That's his line."

Well, they could at least just treat him like he's a normal person.

Just because you're different, you're still like everyone else.

They don't have to always just stare at someone

just because they're different.

For someone who's looking for some kind of support

around living with a disfigurement,

there are perhaps a number of different avenues they could consider.

Firstly condition-specific support groups.

They can be really helpful

if somebody wants to find out a bit more about their condition

but also would like to meet other people who have the same condition.

And professional organisations like Changing Faces,

where they can receive both individual support

and also have the opportunity to meet others

who might have a similar experience to them.

My advice to people in the street is quite simply

I've no problem with anybody taking a second look,

doing the double-take,

but please, for God's sake, no staring.

We don't need it.

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