Friday, 18 November 2016

Stayin' Alive

When you're a person with a disability, death hangs in the background from minute one. Doctors give you a definitive diagnosis: either telling you that you should be dead, or that you might as well be. Should you survive that gauntlet, your first friends naturally become other kids with disabilities. Fortunately I have never lived in fear of my own premature death, but just about everyone else did.

More than half of these kids are gone now, but touch wood, I have never been directly affected by the death of a person with a disability. Quite deliberately, I have avoided forging intense friendship with people purely based on a shared physical disability, because I see myself as 'more than my disability'. Perhaps this is why I recoil in shock over someone's death, but I'm not devastated as more and more people that I once knew begin to disappear.

Lately though it seems to be happening more often. Off the top of my head, I can count at least ten people with disabilities that I know who have died in two years. They were all in their twenties or early thirties. I guess at that age it is the final test as to whether a person with a disability lives to their life expectancy or their disability catches up with them.

In the last three weeks though, two people who I knew tangentially and shared the same disability as I do, have died. Naturally this gives me pause. Rationally though I know that I have been a lot healthier than they were, and their deaths have to do with other things besides the Cerebral Palsy, but that doesn't stop my fear from escalating.

Ironically, the instance of death of a person with a disability is the only time I self identify as a member of the so-called 'disability community'. Each time someone with a disability dies, I refer to them as a soldier of the 'crip army'. There's a reason for this. Every time one of them dies I cannot help but think of the final images of the film, Gallipoli, where soldiers are running across the terrain in the final wave knowing they are going to die, but they do it anyway, despite knowing the cause is entirely futile. The final freeze frame just makes me tear up every time. Another crip gone.


It would be disingenuous to say that I identify with Mel Gibson's character, who tries valiantly to save them all, but is ultimately too late. I know I can't, and I don't try. But I do feel guilty. I feel guilty that I get to live and they don't. 

Sometimes I think of a man I went to school with, who died almost ten years ago. He was the quiet one, he never said a bad word about anyone, but above all he wanted to do the things I took for granted. Or I think of another schoolmate who died almost a year ago, whom I mocked repeatedly as a ten year old for daring to spend time with another person whom I detested for reasons I don't fully understand as an adult. I may be smarter, and I may try to promote causes and people who do good work, but if it was a contest to decide who was the better person, then and now, the above two would beat me every single time.

Maybe that's why I have had this martyr complex most of my life where I have to be half as crippled, and twice as good. In my twenties, particularly, I used to say I was attracted to politics because I could speak for people who could not. A tiny part of that statement could be true, but every time I uttered those words, I knew deep down that it was bullshit. However, it's not hard to see so much death and hardship around me, and not wonder why comparatively I got a good part of an astoundingly shitty deal.

These recent deaths have also coincided with the happiest time in my life. I have got everything I could ever want; a great home, a good job, and most importantly, someone who loves me as much as I love her. These were three parts of my life I thought I would never find. It is the reason I no longer need to justify and record every thought I have. It is the reason I no longer care about what the purpose of my life is. It is the reason I have tried to take a step back from endlessly contemplating the political world, because as much as I do love politics, I need to live my life, and I need to enjoy the other parts of it too.

It makes stomaching these deaths a little harder too, because as much as I've fought for my happiness, and as much as I've earnt it, the fallen soldiers deserved theirs too. Because they worked hard for it too. I just succeeded, where they unfortunately ran out of time.