What we wheelie wheelie want

This article examines the expectations of the public towards disabled users. It argues that the stereotype of the ‘paralympian’ as a typical disabled person may serve only to undermine efforts to create a more inclusive society.

wheelie

I look wistfully inside the new Bohemian cafe which has appeared along the high street. From my wheelchair viewpoint I can observe the carefree conversation of people enjoying an afternoon coffee. But this place isn’t for me. Rather embarrassingly I tried last week to tackle their improvised ramp. Two large steps separated by a doormat: this was surely impossible. “Give it a go mate” were the encouraging words of the patron. Of course it all ended horribly. The power chair came to an abrupt end at the first hurdle.

So what goes on in this place will remain a mystery. As I look at the bistro menu plastered on the window I become aware of a kindred spirit also in a wheelchair. But that’s where the similarities end. This young woman knew how to ‘pop’ a curb. It’s a word that I later learnt. Essentially it means being able to do a wheelie in order to climb a stair. In front of my eyes she was able to pop one step and then another. Wow, this was truly Olympian. This was the ‘regular wheelchair user’ that the patron had mentioned was able to frequent his premises. Surely if she could do it I could do it as well?

This was now beginning to making sense to me. Was this the phantom wheelchair user who had been able to get on the bus without using a ramp. How many times had I sat at the bus stop peering in at the bus driver in some surreal staring stand-off. “Can you make it up there mate.” I look around me. Is he talking to me. Does he see me with flying carpet in hand ready to alight with levitational powers. “No, do you think you could get your ramp down please.” Now I realise he had hoped that I was one of the so-called ‘super crips’: those that are able to bridge a two inch gap with Herculean might and agility.

If only we as wheelchair users were all as adept as the pavement popper. Businesses wouldn’t have to worry about installing ramps. Bus drivers wouldn’t have to get out of their cabs. And positive images of disability would prevail, with only the most fit and able appearing on the street.

I am one of the less visible but more representative examples of wheelchair users that can’t pop a pavement. I am as likely to do a wheelie as I am to complete Franz Schubert’s Unfinished Symphony. The thought of pivoting helplessly on two wheels fills me with dread. Should I crash backwards to the floor my problems would have only just begun. With no upper body strength it would be like watching a beached walrus. Not one jot of help could I give to somebody trying to put me right. Have you ever tried lifting someone that’s a dead weight? So, unless there is a team of paramedics on hand, a wheelie is not on the cards.

How do these messages get out there? Well, surely the media has played a part? Yes, undoubtedly they have taken us out from the dark ages or even the 1970s. A study by Colin Barnes (1992) suggested that there were several distinct stereotypes evident at the time. These included disabled as:

• pitiable and pathetic (heartbreaking stories to raise charitable donations)
• an object of violence (from witchcraft to eugenics)
• sinister and evil (often portrayed as operating outside of the normative rules of society)
• a curio (evident in ‘freak’ shows)
• a super crip (superheroes who can beat any obstacle exemplified by the Paralympian)

Thankfully, only the last of these stereotypes seems to persist in modern media portrayals. The superhero image describes courageous people with a disability, coping successfully with the disability to overcome the odds. Disabled people are seen as failing to deal with their disability unless they overcome it. So what does this tell me – ‘I’ve ended up in my predicament because I haven’t tried hard enough and I’m a loser.’

For progressive illnesses like Multiple Sclerosis (MS), struggling to ‘overcome the illness’ just makes things worse. It’s more about learning to live with it than beating it: treating it as your unwelcome visitor rather than an intruder.

I think of my illness as a riptide or rip current . It’s a strong narrow current that takes the unwary straight out to sea. The temptation is to swim directly against the flow in an attempt to return to the the shore from whence you came. This is what is going to kill you: the exhaustion that occurs from trying to swim against the tide. So for that reason, I’m going to swim parallel to the shore. I’m going to get off the treadmill for my own survival, even if it looks like I’m abandoning the fight.

The stereotype presented in the Paralympics does everything to misrepresent what we are all about. Don’t we love to categorise and classify disability. But we are not very good at it. It seems that in the Paralympic classification MS falls into the category of ‘les autres’ or ‘the others’. Having the illness itself doesn’t automatically qualify you to compete in the Paralympics. Rather, it is the disability that attends the illness. This is assessed in terms of muscle strength, range of motion, ataxia amongst other things. The illness varies widely in terms of severity and permanence. (I’m not going to bore you with the details here but there’s plenty of information at the MS trust.)

I’m grappling around for a wise saying on the subject. Using a quotation from Buddha is usually a good start. I came across this one regarding health:

“Without health life is not life; it is only a state of langour and suffering – an image of death.”

Oh dear, not quite what I was looking for. This definitely belongs in the stereotype ‘sinister and evil’ and maybe explains attitudes towards disability in some cultures. Sometimes when people look aghast at me in the street I feel that I must be presenting an image of death? This is clearly not my intention.
So what am I to make of the Paralympics medal table. We are supposed to have a warm fuzzy feeling as we applaud the British haul of gold. But rather unsettlingly it sits adjacent to countries that have a rather questionable track record when it comes to disability.

Let’s take this opportunity during the Paralympics to really understand disability. We are not going to simply swim directly against the riptide. Moreover, we are not going to embrace the obstacles that society put in our path. We are not about heroism and we’re not beyond asking for help. In the spirit of the Olympics, let’s redouble our efforts to embrace legislation and standards that are too often seen as impediments. We shouldn’t have to be pavement-bumping, wheelie-popping, superhumans to join you for a cup of coffee.

Reference

Colin Barnes (1992), Disabling Imagery and the Media: an exploration of the principles for media representations of disabled people, Halifax BCODP Ryburn Publishing

 

2 thoughts on “What we wheelie wheelie want

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