Beware the man in the wheelchair with worn out shoes

Thursday 8 May, 2014

I keep seeing that phrase thrown around twitter, and it really winds me up. I’ve seen various versions of it as well, each more offensive than the next. Sometimes it’s aimed at fictional characters on telly, disabled characters played by able-bodied actors, and sometimes it’s aimed at wheelchair users who don’t always depend on a wheelchair. There’s sexist versions, homophobic versions, racist versions. The ignorance in this one ignorant comment is horrific and worrying, quite frankly.

No matter how it’s said or who it’s aimed it, it doesn’t matter, it’s a saying that needs to stop. It’s offensive and it’s incorrect. It comes from the belief that every wheelchair user is always in a wheelchair, and it further perpetuates the belief that if you use a wheelchair and are then seen standing up or walking, you are faking, lying and downright untrustworthy.

Honestly, disability is not that plain and simple. Yeah, able-bodied actors playing disabled characters annoy me, because there are plenty of disabled actors out there, who maybe could add a bit of insight to the role, and they don’t get a look in. Why? I’ve never heard of one decent reason yet. But, the way people point out able-bodied people’s portrayal of disabled characters because they happen to see legs moving, feet tapping, is also wrong.

Not all forms of paralyses mean that a person can’t moved affected limbs completely, it also doesn’t mean that the affected limbs are numb to sensations, and it goes without saying that not all wheelchair users are in a wheelchair because they’re paralysed, and not all wheelchair users are wheelchair dependent. Here’s an interesting fact: Some people use wheelchairs because other parts than their legs don’t work! Their legs might be fine and functional, but it’s their backs that don’t work, they might have a heart condition, they might have chronic fatique syndrome. Even some severe forms of tourettes can affect a person’s mobility so much that they need to depend on a wheelchair.

And, for those of us who consider ourselves wheelchair dependent, it still doesn’t mean we’re in our wheelchairs all day, every day. How do you think some people get into their wheelchairs? Magical bubbles lifting us from our beds into our chairs? I use crutchers, some of my friends side transfer, some use a hoist.

All variety of disabilities and mobility aids have their own ways of wreaking havoc on shoes. Don’t believe me? Have a look at these!

my pair of old grubby trainers
These are my shoes, and they’ve been my shoes since 2009. I couldn’t get a decent photo of the tread underneath, but the worst looking shoe from the top is also the most worn out shoe from underneath.

If you’re not the type to think it’s proof of a lack disability, you’d probably think that that’s the shoe for my good leg, and maybe even that it’s all wrecked from having to put my best foot forward everytime I walk. Ahhh, if only I actually had a best foot to put forward! It’s more like not-as-dead-as-my-other-leg!foot Vs the-actual-dead-leg!foot.

Some people who understand the complexity of mobility issues might even assume that it’s all marked at the side from me crossing one leg over the other, or maybe tapping my leg against my chair or crutchers, or maybe even standing on the sides of my feet.

Well, you or that person would be wrong. Cos the worst shoe actually belongs to the foot of the leg that hardly ever moves. The whole leg is practically a dead weight, it catches on the underside of my footplate when I’m lifting it up onto the footplate, it’s constantly rubbing against the holding bar of the footplate as I merrily go along my day. It’s the foot that lands heavily on the ground, I’ve never lifted my feet properly but my knees are now buckled since my hip operation and I’m sure that has made my weight bearing even worse, from a functional viewpoint, so the underside of my shoe takes a bit of a beating.

I’ve seen shoes of the friends who use hoists, and their shoes end up in much the same state, and usually a lot quicker. I’ve seen the treads of the friends who side transfer, and the tread is always worn down, marked, marred or bobbled on the side of the shoes that hit the footplate bar. Same goes for those who use platform footrests and the metal holders.

Honestly, any comments like that are so… stupid and offensive! I can’t even believe people say it. I’ve had these shoes for 5 years, and yeah they’re the longest lasting pair of shoes I’ve had, but look at the state of them! Look at the left shoe! You can’t see it from this angle, but a small bit of stitching has come undone by the heel, it’s only because I don’t walk that that those shoes are still holding together. I imagine if I started miraculously walking everywhere tomorrow, I wouldn’t get very far before the stitching undoes completely and the heel starts coming apart.

Please, next time anyone says it, tell them how wrong they are. Or better yet, point their ignorant faces in this direction. If they want to carry on believing wheelchair users have perfect, pristine, unmarked, unworn shoes, they’ll have to keep me and every other wheelchair user in supply of new shoes every few months!

Oh, that’d be too expensive for them? Well, then they’ll just have to learn and accept the diversity of disability then, won’t they?

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Blog Against Disableism Day – 2014

Friday 2 May, 2014

Yesterday was Blog Against Disableism Day.

I would have liked to have blogged for it, but unfortunately the days before were busy ones and I’d overdone it, so I spent most of yesterday in bed suffering the after affects. Gone are the days were I can blog, lying back in bed with my laptop on top of me, crushing into my ribs.

Shame really, I wrote some of my favourite blog entries with my laptop crushing into my ribs. (But remember, correlation is not causation!)

Anyway, so that’s why I didn’t blog yesterday, on the day, despite it being a topic I’m very passionate about. This topic is, as they say, very much up my street (dropped kerbs implied). So I’m blogging now. I feel like nothing shows how life in itself is disableist than missing disabled-related events because of a disabled-related problem.

And that’s largely the way disableism is for me, and for a lot of people no doubt. Disableism isn’t just about offensive opinions and words, insults that can ruin your day or discriminatory actions, it’s also passive attitudes and unchallenged perceptions.

I’ll give you an idea of how living with a complex, fluctuating disability is quite swings and roundabouts, in regards to disableism, from my own experience.

When I could walk, before the crutches became permanent accessories for my arms, I stood hunched over, on the worse days I walked oddly, I was the height of a ten year old, and quite frankly, my conversation skills didn’t really match my appearance, and thanks to many flus, acid reflux and a post-nasal drip, I also have a voice deeper than what I should have. I got stared at, a lot. I mean, a lot. I’m not being paranoid, even friends commented on it. Children would just stand and stare at me, some people would be taken aback when I interacted with them, and just in general, I could tell people didn’t know what to make of me. I assume, to them, I was just all around odd.

And then I was permanently on crutches, and I found that whilst adults took to me better, I assume down to them being able to categorise me better, children’s staring increased. Again, that’s not me being paranoid, this was also something a friend at the time noticed and commented on. I didn’t shave my head or get my nose pierced for this reason, but at least when I did do those things, it gave them something a bit more interesting to stare at whilst they were staring.

I remember on one memorable day, I got ID’d because I didn’t passt for eighteen, my disability was questioned, because I was only on crutchers, and then got referred to as a lady. Not even young lady, a child called me a lady.

I just never knew, during that time of my life, what attitude I’d be faced with next.

And then i was in my wheelchair more, walking less and less. It was the strangest thing, even with my shaved hair, in my purple wheelchair, always by myself, always seemingly a bit out of place, I got stared at a lot less. Again, something that friends noticed on my behalf.

The downfall?

Pretty much everything else. Everyone around me just didn’t expect me, now wheelchair bound, to want to carry on as normal, seemed to think I was expecting too much when I expected to be able to carry on as normal. I still took the bus, but god forbid I ask the driver to put the ramp down, god forbid I even expect a ramp in the first place! I tried to shop, and in some ways it was suddenly easier in a wheelchair, but it was also more difficult. I realised I could carry things on my lap, whereas using crutches meant I never had a free hand to carry things with, and I was always too frightened of being mistaken for a shoplifter to put things in my pocket until I got to the til. The one time I asked for assistance, I practically overcame crippling social anxiety to do so, it was for one thing, he picked it up and carried it all the way to the fil for me. It was a beautiful moment.

I did not have the same experience when in my wheelchair. I won’t name the shop, but I went in for a jar of dip. It was on the shelf that was just above my reaching height, and I flagged down a middle-aged man, who did actually work there not just a random stranger, and asked him if he could pass me the jar down. He did so after a sigh, and pointed out, ever so helpfully, that if I need help, I should get a carer.

And that’s the crux of my experiences with disableism. People in general do not understand complex, fluctuating disabilities, or that disability is a spectrum.

At that point in my life, I did not need a carer. I needed people to do their jobs and a jar of dolmio salsa dip. Disabled people are only seen as a burden, people you’re made to go out of your way for, because we’ve not been given the opportunity to be independent.

Now I do need more help, and I have a support worker. My condition is worse, and sadly I find people’s attitudes towards disabled people worse. If I could go back to the days were being stared at were my most upsetting experiences, I would in a second.

But that’s not reality, and reality is getting worse. The disabled are fighting a war we’ve been set up to lose. We’re meant to have jobs, but we’re not expected to want to use public transport to get to them. DLA is switching to PIP, a lesser benefit that is insufficient and it’s taking motability down with it, and Access to Work has been cut. Lately I’ve been in arguments that have started because an able-bodied person has refused to give me access to the wheelchair accessible facilities I require, because it puts them out, my well-being be damned. They wouldn’t even have such facilities to appropriate if it wasn’t for disabled people demanding equality.

DSA is changing, at risk of going completely. So disabled people are meant to have jobs to pay their way, but without the education and qualifications to qualify for them? There’s the attitude with ablebodied people that if they don’t go to university, at least they can try for manual labour type work or retail. The chances of a severely disabled person being able to for that type of job are low, and if they could, the chances that they’d be hired are also low.

Negative comments, insults, threatening behaviour, ignorance, refusal to act in a helpful manner, online harassment, I’ve experienced them all. But there’s something deeper and darker at work. If you’re well enough to play along with the system like I once was, you feel like you’re fine, that it’s not that bad for you, but it is. Because you have to play along with the system. When you stop being able to, you realise how broken our society really is. And the foundations are in the disableist attitudes.

We can’t correct people’s derogatory comments until we have the support and understanding from the government to flourish. The systematic break down of a disabled person’s life needs to end, not the disabled person’s life.

And one more thing, can we knock the term “differently abled” on it’s head, please? I can’t think of a more patronising term for disabled that makes me queasy, and I’ve heard a few! It completely erases the existence of disability, and it’s as harmful as the phrase “the only disability is a bad attitude.” No, disability is disability, bad attitude or not.

I’ve learnt to adapt because I’ve needed to, and it wasn’t easy. I life my life very differently to what I used to, and it’s not easy. I can no longer go for long walks, it hasn’t given me the ability to fly, blow up things, or see ghosts. I’m not a member of the X-Men, i’m disabled.

All the term “Differently Abled” says to me is that it’s more important to put a positive spin on disability than it is to understand the complexities of disability.

I am disabled, and I’m proud at working around my obstacles, but if i do things differently, it’s because I’m just that good adapting. But I, and many other disabled people, adapt out of necessity because the greater society fails to adapt to us. Most buildings are still built with stairs, lifts are still mostly an afterthought.

Calling disabled people Differently Abled isn’t just insulting to many disabled people, it’s also insulting to able bodied people.