Friday, 9 April 2010

The First Line of the Obituary

You know my story, right?

Baby boy from a dedicated family gets diagnosed with a debilitating physical disability at eight months of age. Doctors tell the family to give up hope; the boy has no future they say. Through hard work and a fair slice of luck, boy beats the odds and finishes school when nobody expected him to. He then completes his first university degree where he excels in a world which finally understands him. He carves out a life simultaneously in politics and academia, and completes an honours degree with remarkable results. He is now completing a PhD, teaches politics at university, and is a member of several key components of the Sunshine Coast ALP.

This is a very, very abbreviated version of my life story, one that has been told so many times that I’ve lost track. In a world where first impressions count I’m the ultimate case of ‘don’t judge a book by its cover’. People see the wheelchair and automatically jump to the wrong conclusions: that somehow a physical deficit turns into an intellectual one. That it is not possible for me to be a political scientist. Every time I mention my profession upon first meeting almost everyone treats it like some miracle. It is and it isn’t.

I don’t know how I got to a kid with ‘no future’ to a man who does all these things listed above. The doctors don’t know. My parents don’t know. Sure, they and I worked hard to beat the odds, but surely some of it was due to some slice of luck too, we just don’t know the exact recipe. How hard did we have to work so that I could earn that luck? It is something I think about every single day, it is something I struggle with every single day.

The relationship I have with my disability is by far the most complex I have. I hate having a disability, hate it. I wish to kill it, but know that it is not ever possible. No matter what I do, even if I were to become Prime Minister, have an affair with his wife, or plot to bring him down in a clandestine affair, the first line of my obituary will still read ‘Suffered from Cerebral Palsy’. Only a person with a disability knows what it is like to be defined by what he can’t do, rather than what he can. Because of my achievements I am looked at as an ‘inspiration’. This is a title I do not want, need or desire, but know I am going to get lumped with it anyway, regardless if I deserve it or not, all because I can’t walk.

If I achieve all my goals I’ll most likely be defined as an ‘inspiration’ by the general public at large, end up being profiled by Australian Story or 60 Minutes, the former a great program, the latter an utterly shithouse program, but still their purpose remains the same: the angle won’t be ‘he has changed political strategy as we know it’ it will be ‘He’s in a wheelchair, and he has changed political strategy as we know it. I hate, hate, hate that

As I’ve said a few times previously I hate the disabled community. I know a fair few people with disabilities will read that and bristle at the thought, but again it all comes down to deficits rather than empowerment. However I have no choice but to accept that I am part of a community that I loathe for the rest of my life. That I may well be uttered in the same breath as absolute wankers like Paraolympian Kurt Fernley, who despite his phenomenal athletic abilities continues to use his disability as a tool for arrogant martyrdom. He does not represent me and I do not represent him. I wish to be treated as if I never had a disability, but know that cannot possibly happen. I wish to disassociate myself from any and all ‘disability issues’, but know that can never happen. At seven years old it was my dream to play full forward for the Port Adelaide Magpies, and at some point I had to learn that it would never happen. Soon after I learnt that I knew that I could never escape my disability no matter how hard I tried.

The last year has been the most satisfying period in my life for a number of reasons, but also the most frustrating. I understand why my peers literally go crazy at the thought of managing their disability for the rest of their lives. If I didn’t have a disability I could do so many things, but without it I wouldn’t have met the people I have and I’d be in an entirely different place, and I would have just as many problems, although they’d have a lower profile. I wish I wasn’t disabled 200 times a day, but I am, and I have to deal with it no matter how much I hate it.

4 comments:

  1. Very moving post, Todd... It's sad that society defines people by their disability first and I can't imagine how frustrating it must be for you! You are right in what you said at the end there though...life is frustrating, but all anyone can do is play the cards their dealt and I think that the fact that you are playing yours better than perhaps others in similar conditions to you have IS pretty inspiring...I also think your academic achievements are inspiring, period. Wheelchair or not. x

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  2. Great article.

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  3. Thanks for sharing your thoughts, and frustrations. (heh, just re-read your blog title, and now I feel silly!) Great writing, and description of a complex life that's so easy for others to looks at and 'simplify' for themselves.
    I'd love to see some of your political thoughts to - do you think you will blog about those?

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  4. Why thank you. Politics takes up roughly about a third of the blog. I encourage you to have a wonder through the archives and leave some feedback.

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