April 14, 2018

Why disfigurement should be aspirational

By: Anne Soilleux

I don’t quite remember when I realised that I looked different to everyone else. There must have been a time when I was very small when I wasn’t aware of it. The knowledge that I was not the same as everyone else just seems to have been there all my life. It’s an awareness not formed from what I saw every morning in the mirror, but what was reflected back to me by other people; a look, a gesture, what they said - or sometimes what they didn’t say. An attitude. A judgement. A thousand individual events, piling up so that by the age of six I knew that I was never going to be the popular girl in class, the one people wanted to play with. One of my most enduring memories is sitting on a bench in the playground, watching every other kid in the class playing snake - a game that involved each child linking hands with another - a chain of human connections. No one asked me to join in. I can’t remember if I asked - I think by that age I had learnt that it wasn’t worth it. So I sat alone, swinging my legs and trying to fight off tears until a kindly teacher brought out a book and sat with me, reading. It was only twenty years later I realised what she didn’t do - namely stop the game, question why I wasn’t included. She was kind, but ultimately, she was complicit. She reinforced society’s message. You are not one of us. You don’t belong. You are not wanted.

Fast forward to the present and I like to think most people would be appalled if something like that happened to a child. But we shouldn’t fool ourselves. We are still a long way from living in a society that doesn’t marginalise those with a disfigurement. If you have a disfigurement, your life must be a tragedy, regardless of whether it causes you physical pain or loss of function.

For this reason, people often tell me I am inspirational. Now let me get this straight. I have lead a rather unremarkable life for anyone of my background and income group. I have not travelled the world (haven’t really wanted to), I have not scaled Everest (too lazy) and I have not found a cure for cancer. I have mostly, got an education, gone to work and done pretty much the same as my peers. But this is viewed as something extraordinary because I have a disfiguring disability. My only explanation for this is that other people must think that living with a visible difference is a truly terrifying experience. When you tell me I am inspirational, you are basically telling me you think my life must suck and that I am inspiring you not to feel sorry for yourself, because, hey, there’s someone worse off than you. And in doing so you immediately become part of the problem.

Knowing people don’t want to live your life makes it feel devalued and marginalised. It makes you feel as if you have nothing to offer, when you know absolutely that this is not the case. I don’t want to be inspirational - I want to be aspirational. I want people to look at my life and not be afraid to live it. Because, after all, what is so truly terrible about looking different?

*** Can you relate to Anne's story? Do you think calling disfigurement "inspirational" is problematic? Comment below***

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