I was sitting alongside the exercise track by the beach trying to untangle my iPod headphones prior to taking some exercise. Suddenly a shadow fell over me and I looked up to see a beaming lady hovering by my side. “My goodness” she said “You are so inspirational.”
“I KNOW.” I replied “These headphone wires are a total b*tch to untangle. Who designs these things?”
She looked totally confused but ploughed on regardless “It’s just wonderful to see you out. You are so brave!”
Internally I sighed. I knew she meant well but, once again I and a total stranger had both become victims of society’s strange and contradictory attitude to disabled people. On the one hand this nice lady was offering her support and endorsement of me being on the loose in public in a wheelchair. On the other, the fact that she felt compelled to come and congratulate me for just being outside whilst disabled, demonstrated discrimination. She wasn’t congratulating anybody else for exercising so I was being singled out because of my disability.
Of course, to charge into all of this at half past three on a Thursday afternoon with this nice lady would have been unkind, unfair and, ultimately pointless but it did make me start to question just what it is that so raises my hackles about being called the ‘I’ word – Inspirational. Unfortunately, you’re all now going to get my resultant thinking on the subject. Buckle up.
So let’s start with the dark side and then we can slowly crawl up into the light and end on a positive note. The achievements of disabled people are often held up as motivational models for the able-bodied. Sometimes that is done in an empowering way – think Ch4’s campaign for the paralympics of ‘Here come the superhumans’ but more often it is done in a way that says to the able-bodied ‘Look, if THEY can manage this (swimming the Channel with no arms/winning Olympic Gold with no legs/untangling iPod wires in a stiff breeze from a wheelchair) then what’s your excuse? On the surface this seems laudatory but what it is REALLY saying is ‘these people have it a lot worse than you so feel grateful for what you have’. That’s all very well for the able-bodied but what about how it makes the ‘worse-off’ person feel?
I can tell you that it makes us feel pretty crap, actually and where the weirdness of it really begins to show up is if you try applying the same approach to other groups. It would not be considered in the slightest bit acceptable to march up to someone who is overweight and tell them that they have reaffirmed how grateful you are to be thin, for example.
What these well-meaning people do (and they are all well-meaning in my experience. Nobody has deliberately conveyed that my being crippled makes them feel much better with the aim of upsetting me, apart from, possibly, Karma Guy) is alienate the disabled further. Accessibility is not simply physical for us – it’s also about being accepted rather than segregated in society. When I am wandering around Tesco’s pondering semi-skimmed or whole, I am just, to me, someone shopping. If a passer-by launches into the whole ‘you’re so amazing for being in aisle three’ routine, what that does is mark me apart again as well as forcing me to confront the uncomfortable reality that I am probably in a worse physical state than anyone else in the shop. That’s not a pleasant feeling. In a supermarket in Australia one man reduced me to tears of fury by airily rounding a corner, spotting me and relating the following “Oh, hello. I nearly ended up in one of those but I told my surgeon that I simply refused to live my life in a wheelchair so I didn’t.” Yes. Quite right. I am in this wheelchair not because I hit hard ground headfirst from a considerable height, literally smashed my cervical spine into little pieces and crushed my spinal cord but because I am, in fact, just not determined enough to walk. I mean, where do you even start with that ignorant and hurtful nonsense? If willpower was all it took then I and most of the people I know in wheelchairs would be up and walking ten minutes after our accidents.
And yet, and yet – talking of willpower, you need a vast amount of it to live as a disabled person. Whilst I am wanting to blend into daily life rather than be marked apart it is also true that it was a damn sight harder for me to get to the supermarket than it was for everyone else. It wouldn’t have taken them several hours and as much effort as a good gym workout just to get up, get showered and get dressed. They wouldn’t have had the frustration of trying to make and eat breakfast with the use of half one hand. It wouldn’t have taken them a good five to ten minutes just to get in and out of their car. They wouldn’t be doing any of this whilst always in a state of constant, uncomfortable nerve pain. So actually, much like Muttley, perhaps I should be sitting by the milk demanding a bloody medal.
In addition, having a physical disability means society does convey upon you a kind of untouchable status. Last week I was talking to someone who didn’t like something else a person in a wheelchair had done but immediately added ‘But you’re not allowed to say that though are you? Because they’re in a wheelchair.’ I nodded gravely. ‘Absolutely not.’ I concurred ‘We must not be criticised.’ There is no getting away from the fact that this is as discriminatory as being singled out and then congratulated for managing to be out of the house but since I quite like this aspect, I’m hypocritically all for it continuing. Other advantages include but are not limited to:
Smuggling previously bought goodies on my lap into the cinema to avoid having to take out a mortgage for a Pepsi Max and a box of Maltesers – who is going to dare to start rummaging underneath the artfully-draped anorak of the girl in a wheelchair after all? Technically I am not even sure this is forbidden but it feels like it is so ha!
Being asked to give motivational speeches. Trust me when I tell you that no-one wanted me to come and talk to them about advertising cereal in my previous life.
The ability to park on double yellow lines. Himself once observed, as we drew to a halt directly outside our restaurant one rainy night “It was worth breaking your neck just for the parking privileges.”
Having no-one dare argue with you if you have to complain – although it would be nice if the vast majority of my complaints were not of the tediously tiring sort like ‘Why do you have all your disabled rooms on the first floor and ordinary rooms on the ground floor and a lift that doesn’t work?’or ‘Perhaps you might like to explain to me how you can say your pub has disabled access when it’s actually taken me ten minutes to get in and has involved three men to carry me up several flights of steps, the drawn-out unlocking of some jammed back door, being pushed through the kitchen and then the wholesale arrangement of 70% of your other patrons and their tables and chairs to get me to mine?’ or ‘For the love of all that is holy, can you please stop putting this gigantic nappy bin in your disabled toilet because it means THERE ISN’T ROOM TO GET A WHEELCHAIR IN IT!!’
These are all true complaints that I have had to make, by the way. The last one backfired though because the next time I visited that particular loo in that particular hotel they had gone to some considerable effort to structurally re-arrange the whole thing. The good news: the nappy bin had gone. The bad news: they had swapped over the loo and the sink so there was now only a five inch gap between the front of the loo and the wall, meaning no wheelchair user could get past it to use the sink which was now on the far side. For an extra dose of irony in a pandemic, they had also thoughtfully plastered several notices around said loo about, having rendered it entirely impossible, the importance of thoroughly washing your hands. I promise, once again, that I am not making this idiocy up.
So, I find myself wondering where to conclude I sit on all this and I guess it’s that disabled people do deserve a hell of a lot of respect from the able bodied. Almost everything in normal life is hard because the world is not set up – especially in the UK – for us. Many should be awarded a bloody medal for making it to the supermarket, given the hurdles we’ve overcome to get there. Having recognition of that fight and respect for it is great – thank you, bring it on. However saying we’re inspirational isn’t actually about us – it’s about you and how our disability has made you feel. That’s fine but it’s something you can think and feel without relating it out loud. One of these approaches recognises and applauds our strength. The other tells us that we have made you feel better by being worse off than you are.