Today was the first day I have been able to visit the shops in the town where I live for five months. I spend most of my energy photographing the countryside and there’s none spare for visiting towns and travelling.
Severe illness make it hard for me to sit up for any length of time so visiting even a supermarket is an exciting treat nowadays. (I Know). I do all my shopping online, but sometimes it’s just nice to buy something in person, and as access is poor where I live, supermarkets are an easy choice to visit.
Today I turned the corner into the high street, and a man stood still pointed at me and made a joke. I felt an anger and mys response was to drive right up to him and say ‘Fuck off’ in a very loud voice. I was so angry. I’d waited five months to see a town that I used to be part of and that was the response I received. He carried on laughing, and then he realised I wasn’t joking. I drove on and I felt upset and angry. So, I look different because I’m in a wheelchair, truth is I’ve always looked different, but since about 16 when leaving school the comments stopped. Two years into being a wheelchair user they’ve started again.
And a part of me can’t believe it. It’s 2015 nearly 2016, why is pointing at people and making jokes to complete strangers funny or even acceptable ? To give you an idea, I receive this kind of comment about twice a week on average in the summer, much less in winter. It can be daily.
Today I felt like driving my wheelchair down to the weir and screaming into the White water, screaming away all my anger, my frustration, my physical exhaustion and pain. I imagine anger exiting from me in a black vapour, clouding the streets, evenloping people.
In truth, when you become a wheelchair user you become a non person, an object of pity or someone who’s unbelievably inspirational for just going outside the front door.
I know people who won’t go out in a chair, it’s just too much. I have empathy with that, but I’m not staying inside for the foreseeable future, bugger that ! To me it’s like accepting defeat, not from my illness, but from a society that treats us as mascots, cheering us on in one instant and then denying us access to public buildings the next.
The truth is, disability, illness, can happen to anyone. I never dreamed I’d be in a wheelchair, I used to walk for a living, teaching people photography ! For god’s sake? How can this have happened to me?
After I became ill I didn’t know what to do on my social networks, to tell people. I had no idea how permanent my illness would be. I read a survey where 85% of people didn’t know a single disabled person, And that stuck in my mind. If I could change just one person’s perception of disability or illness or both then I have made a difference.
Next time you think about making a jokey comment, to a wheelchair user, imagine what you would want, to go out unimpeded by people or to have people standing in front of your chair, blocking your way and making silly comments. Imagine if the person was your child, your sibling, your friend.
I’ve read blogs about invisible disabilities and I agree society is just as ignorant about them as it is about visible ones. But ironically, I would love to be invisible, to have no one look at me, and then look away, I’d love to be able to have an afternoon out without one comment, gesture or stare. I remember sobbing this summer as a close friend told me the comments were never going to stop, please, please just make them stop. Make this stop. Make me well.
He was right they aren’t going to, and I go out the door each day knowing that, and knowing I’m visibly different. And yet I still go.
And guess what ? I still will. I wrote on Twitter recently I didn’t know what was worse the illness that means I can’t walk or sit up or people’s attitude towards us.
I now know it’s the illness. Most days I simply ignore people, comments, stares, theatrically throwing themselves out the way of the wheelchair. Today, I couldn’t.