Monday, October 24, 2011

And everybody loves a freakshow

A journalist who was writing an article about me and taking pictures a few years ago asked if he could follow me in the bathroom, when I excused myself in the middle of an interview. "People need to see how you pee" were his words. Granted he was told to wait outside and I'm not entirely sure if he was kidding or not, but I understand where he was coming from. It may had been interesting to his readers how I do everyday things. How I move, stand, transfer, manage. How somebody in a wheelchair, with my type of disability accomplishes something as effortless for a physically able person as walking up, pulling their pants down and sitting. Being interested in how others do things has always been part of the human condition. That's why we gossip, that's why we spy, that's why reality television will not leave the airwaves until the end of  time. It sounds patronizing and disrespectful when somebody bluntly touches upon a very intimate subject but as always I tell myself: he's asking because he doesn't know. And I recognize that in order to push my case forward, to make the media hear what I have to say I need to attract their attention. Because they only care about the extraordinary they have to see me as something unusual. I have to be out there, I must be visible, accessible and tell my story to all that would listen. But how can I claim that people like me are as normal as anybody else if my story is framed and hyped as one of amazing success? You're either normal or extraordinary. And I always said that there's no glory in making the best out of a imperfect situation and that's what I did- I did y best. Many people with Cerebral Palsy are or could be highly functional making me not that special and that's kind of the point. I'm more than willing to share my experiences if they help to inspire, but how do I do it in a way that I'm not an exhibit? There's always a risk that people will only see you for your condition. It happened just this Saturday as I was coming home. A drunk woman approaches me and asked if I had Cerebral Palsy. I didn't know her, she didn't know the first thing about me, not even my name so I told her she was a little bit rude. That's OK, we're doctors- she said as if her profession gave her permission to be tactless. We don't say "Is that a wig", to strangers or "Is that a fake nose" to people on the street. Yet people have approached with truly bizarre and intimate questions about my disability. People I didn't know, as if I was there for their entertainment. I'm not ashamed of what I have and I don't mind talking about it. But I don't wanna think that what attracts people to me is their craving for something unusual to see. Nobody wants to be a circus attraction. 


  1. Oh dear. Well, you did chose to go to America and one has to wonder whether all this goes with the territory. If you had come to England you might have found that nobody mentions it. Ever. Even if they were to speak to you at all!


    You win some and you lose some.


  2. Yeah well that's no excuse for their behavior. No matter where you are, people should treat you like a human, not a science experiment. I've been in a chair for over 6 years, and find that people act different to me than they did when I was a walker. It's bullsh*t. Walkers like to think it's normal and they can get away with treating you different cause you are "Special". These walkers are all over the world and then some. The only losers are those who are blinded by there own insecurities.