Although my upcoming talk this week is on photography I’m using the platform to make some subtle points about disability. My neighbour used to be a keen mountaineer, only he got stuck up a mountain in a blizzard for 24 hours and lost all his fingers, both thumbs and part of his nose to frostbite and had to have his leg amputated as it was badly crushed. He is the poster child of someone who is disabled. I, OTOH, will look totally fit and well as I stand before my audience yet the ‘disabled’ guy runs 3 miles a night on his artificial leg and still goes mountaineering while I struggle some days to get dressed and only manage a shower once a week.
I asked if I could take a photo of my neighbour for my talk and he agreed. The resulting image was put on facebook and immediately I received comments on how brave and inspiring he is because of all he achieves despite the challenges his disability poses. I don’t disagree. Despite having no fingers and only one leg he runs a thriving upholstery business, has 4 children and has so far been on three holidays this year………while I lie in my bed skint and alone having not had a holiday since 1996 because I’m way too sick to travel.
I’ll never be called inspiring or brave. Not that I would want to be called brave simply for enduring the shitty hand I’ve been dealt and I know it also gets on disabled people’s nerves – it’s not like we’ve deliberately chosen our lives like someone chooses to run into a burning building – but the point remains that there is acknowledgement of overcoming adversity with disabilities which is absent when one is chronically, and more importantly untreatably, ill. It is, of course, a different kettle of fish when it comes to The Big C because cancer patients are routinely thought of as ‘brave’ and ‘inspiring’ and when they’re cured by modern medicine they are deemed to have ‘won the battle’, words which are all too often missing when describing the chronically ill.
If healthy people acknowledge me at all it’s as lazy, weird, anti-social, weak or a scrounger and the words “you poor thing” have actually been said to my face. The strength it takes to live a life of chronic illness is never acknowledged let alone applauded.
I may not have four children (who, btw, live full time with their mother) but I do have a dog and two elderly, sick parents to look after. I may not climb mountains but I create with my photography. I blog (nearly 1 million visitors!), I volunteer, I teach…………yet he is ‘brave’ and ‘inspiring’ while I am ‘weird’, ‘lazy’ and ‘a poor thing’. Why is that I wonder?