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Last Updated: Wednesday, 6 August, 2003, 12:15 GMT 13:15 UK
Why I want you to look me in the face
Instead of people looking away, gasping, or shuddering, Vicky Lucas wants them to know that her face is integral to who she is. And, as she explains here, she likes who she is.

I have a rare genetic disorder called Cherubism, which affects my face. I was diagnosed when I was about four years old. I was too young to remember what happened, but visiting hospitals became a regular part of my life.

Although it was only when I was about six that my face started to really change shape, I don't remember a time when I didn't look different.

Growing up with a facial disfigurement wasn't easy. When puberty kicked in, it included all the usual developments with a little bit extra - my face became very large and my eyes were more affected too.

Double take

My teenage years were difficult. People would sometimes stare or do a double take. Some people would be downright nasty and call me names.

Even when people said 'Oh you poor thing!' their pity also hurt me and that hurt would stay with me for a long time. I became very withdrawn, afraid of how I might be treated if I went out.

I'm not against plastic surgery... I decided that it wasn't my face that I wanted to change, but social attitudes
But over time, I gradually started to develop my self-esteem and self-confidence and I started to feel that I shouldn't waste my life just because of other people's attitudes towards me.

At the age of 16 I went to college and studied subjects such as film, media studies and photography. I started to research the representation of disfigured people in the media.

When I looked at how people with facial disfigurements are portrayed in films, well, no wonder people don't know how to react to us! Freddy Krueger in Nightmare on Elm Street, the Joker in Batman, the various scarred villains in gangster films... the list is endless.

Bad assumption

With stereotypes like that, it's hardly surprising that people assume that if you have a facial difference, there must be something 'different' or 'bad' about you in the inside too.

This was a huge turning point for me because I realised that facial disfigurement was not just a medical issue, but a social issue as well.

I realised that the reason why I was so unhappy was not because of my face, but the way some people would react to it. I decided that it wasn't my face that I wanted to change, but social attitudes. I'm not against plastic surgery. It's just that my personal choice is to not have it.

Now, at the age of 24, I'm used to seeing my face reflected back at me in the mirror and I'm okay with it. Though I could quite happily do without the headaches and double vision. I also dislike being physically unable to wink, but I've overcome this particular disability by doing a nice line in fluttering and blinking.

But my face is integral to who I am. The way people treat me and the way I've had to learn to live my life has created the person I am today.

Lack of imagination

I love the good genuine friends my face has brought me and I appreciate the way it's made me want to be a better person. I also have a boyfriend who thinks I look like a cat. I'm not quite sure if I agree with him, but I'm certainly not complaining!

CHERUBISM
Cherubism is a genetic disorder which causes growth of the lower face
It gets its name from the supposed similarity it creates to cherubs from Renaissance art
Now, whenever a person says I'm ugly, I just pity them for their lack of imagination. For every person who calls me fat chin, I think 'Nah! It's just that you've got a really small weak one. Talk about chin envy!'

For every naturally curious stare I get, I give a friendly smile. And if they don't smile back within my 10-second time limit, I give them a very effective scowl.

Last week, walking in the street with my boyfriend, a man walked towards me and went 'Urghhhhhooooooh!'

Confrontation

It wasn't so much a word as a strange guttural sound, and the kind that only funny looking people could understand the subtext to. I was so angry that I confronted him.

I won't go into details of what I did but let's just say it's probably the last time he ever gives a strange guttural sound to a funny looking woman in the street ever again.

Two minutes later, as we were walking home, a homeless man came up to me asking for change. He asked me how I was. "Fine', I said and I told him what had just happened. There was a short pause. Then he smiled and said 'I hope you hurt him!' We all laughed.

It's funny how some strangers can be so cruel and hurtful, and yet others, the ones you'd least expect, the ones you would usually ignore and think nothing of, can be so warm and kind.

That pretty much sums up my life. I go from experiencing the worst in people to the very best, and often within the same five minutes! It makes my life more challenging, but also very interesting. I wouldn't want to change that for the world.


Vicky Lucas is taking part in What Are You Staring At?, a documentary being broadcast in the UK on BBC Two on Wednesday at 2100 BST.

Add your comments on this story:

Respect!
Martin, England

I was born with a congential eye disorder, a form of lazy eye and underwent 4 operations between the age of 2 and 19. It made my life very difficult in terms of bullying and teasing during my school years and the thing that surprised me at the time is how this continued into adult life - although of course to a lesser extent. Things that happen in the playground still occur in the workplace / pubs etc on occasion. Now in my mid-30s, I am more comfortable with myself but its still easy to get hurt by a society that literally takes us at 'face-value'.
Ian Banks , UK

Vicky is an inspiration. Society has always and still does dictate what is beautiful and acceptable. It's not just people with physical disabilities but also people with skin disorders (such as myself). I grew up with years of abuse and bullying because I had eczema. People even went as far as to spit on me and avoid looking at me in the street in case I was contageous. It's high time people talked more about these issues and realised that behind these differences, we are all just people with feelings.
Alice, England

I have the most sincere sympathy and admiration for Vicky - I have a disabled aunt, who like Vicky has endured a lifetime of cruel comments. But Vicky is being rather optimistic that she can 'change social attitudes' - I'm afraid that will never happen. Also, Vicky is still young and idealistic, in another 20 years or so, she might regret not taking advantage of the marvellous work that our gifted plastic surgeons achieve.
Mrs Debbie Eagle, UK

Vicky is really brave and strong. These factors make her more beautiful than just having a pretty face. She is individual and unique.
Anna, England

While I'm not sure i'd make the same choice, her commentary makes a very useful point: by whatever means, most of us would like to have some indicator of the contents of other people's character at first meeting. Her deformity obviously goes a long way to providing her with this. After all, of what use are false friends?
Fred H. Francis, US

This is further proof that life is about self belief, we are all given set backs in life but to take a positive approach towards them gives fulfillment from within. Vicky Lucas has an outlook on life that we would all do well to follow.
Louise Spurgeon, England

Vicky, I just wanted to say how nice it is to hear of someone who is happy with themselves. I see your future is set to be a happy one because you feel this way. Many people have unhappy lives because they do not love who they are. Good luck
Angela, UK

Vicky Lucas is a brave woman and the people who made nasty comments at her are low. But I think Ms Lucas is not mellow enough because she could show her defiance in a more subtle way: get surgery and keep photos of her old face.
Au-yeung, Sin, Hong Kong

Vicky, you're great! People always seem to forget that no-one has a completely "perfect" body. We'd all change parts of ourselves if we could - bigger boobs, smaller bum, taller, shorter, fatter, thinner, and no spots. But do we get mean with each other over these things?
Gemma, Scotland

You go girl!!! Well done for being so brave and feisty! I really admire you!
Cecilia Stinton, England

Bravo Vicky! You strike an oh-so-familiar chord with me. I had a Downs Syndrome child who through much effort on her part eventually attained about a 5th grade education and was gainfully employed. I was terribly proud of her achievements but many people hinted that she should have been "put away" so as to be less of a burden. Well, achieving "less of a burden" isn't what life is all about. Life is about the richness of life that can be gained from coping with burdens.
Bill Riffe, 74, US

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