Wheelistically @ Claire.NU

Well, it seems my last post opened the floodgates to the nutters.

Before I go any fur­ther, I would like to stress that this post DOES NOT refer to the lovely people who com­men­ted. You were sens­it­ive, under­stand­ing and helped me buck my ideas up. You did not pat­ron­ise, nor pity, but offered usable advice and a friendly “ear”. I thank you for that, and it’s people like you that make me real­ise the world isn’t totally off its trol­ley just yet. I mean that, you guys are lovely, with bells on.

How­ever, some (no doubt well-intentioned) fruit­cakes have clearly been given access to a com­puter and an Inter­net con­nec­tion when they in fact, should have been tak­ing their med­ic­a­tion and set­tling down for a nice cosy group ses­sion with all the other La-La’s in their local ther­apy workshop.

This week, my inbox has been sub­ject to some inter­est­ing insights that have a tend­ency to begin with an approx­im­a­tion of the phrase:

“I’m sorry you’re in a wheelchair”

Are you, really? Well I hope for your sake it doesn’t keep you up at night mate, because it sure as Hell doesn’t me.

No, actu­ally, I am sorry. I’m sorry you’ve been brought up in such a way that you thought that was an accept­able approach to take when con­tact­ing com­plete strangers without any form of pro­voca­tion. I am sorry that you are under the impres­sion that such a phrase, as given above, would be one that I would wel­come at the end of a shit 72 hours of Sci­atic discomfort.

But ulti­mately, I am sorry to myself. I am sorry that I have por­trayed myself and my dis­ab­il­ity in such a way that other people feel sorry.

I try so hard to dis­cuss my life in a way that is open, hon­est, but free of self-pity. When I men­tion how my dis­ab­il­ity and how it affects my day to day life, I do so to give a sense of com­ple­tion to the pic­ture, for the sake of you, the reader. How can I not men­tion it, when the first thing I do when I wake up in the morn­ing is not brush my teeth or pee, but get­ting into my wheelchair?

I talk about it because it is a fac­tual, and in many ways, integ­ral part of my exist­ence. To not talk about it would defeat the object of blog­ging under my own name, I may as well go out and con­struct a fic­tional per­sona, like most oth­ers do online. I talk about it because to me it is not taboo, it is not some­thing to be spoken about in hushed tones when I leave the room, it is not some­thing I feel bad about or skirt around. It isn’t a neg­at­ive thing that strangers should feel the need to con­sole me for.

I’ve been there, sat on a bus and every bas­tard is rub­ber­neck­ing it to get a good look because get­ting me on a bloody bus is a song and a dance.

First, the bus pulls up, but I can’t get on because it has pulled up with the centre “wheel­chair access” doors in front of a bollard.

So then, the bus moves slightly, the bus slowly lowers, the doors open and that blas­ted beep­ing strikes up as the ramp ejects in slow-motion, but not before sev­eral false starts and the doors open­ing and shut­ting repeatedly (because that func­tion is always on the blink).

Might as well be bleed­ing fanfare.

Then, when I do get on, some middle-aged suit has plonked his back­side on the fold-down seat in the wheel­chair bay and looks at me as if to say, “WHY?” when I ask him if he would mind mov­ing (they don’t just get up and offer you a place, oh no!).

I then sit for the entire jour­ney as the con­tents of the bus mut­ters under its col­lect­ive breath and grumbles that their day has now been set-back almost 10 minutes, all for the bloody “Spe­cial”. With the excep­tion of course, of the two old ladies sit­ting in the seats next to me whom, take to dis­cuss­ing my pre­dic­a­ment rather loudly:

*Tuts*
“Oooh, ain’t it a shame, eh?” Lady #1 remarks to Lady #2 as if the mere sight of me pains her to the core. Sort of like facial expres­sion people get when they’ve just seen foot­age of a Third World baby nigh on starvation.

“Oh, yeah” Says Lady #2 fur­row­ing her brow in agreement.

“She’s so young an’ all, its such a shame, unnit… Sum­ming to ‘appen’ to someone young, like that…”

Lady #2 nods again in agree­ment, looks at K and turns to Lady #1 some­what brightened, “Ah, ‘least she’s got a little friend to take ‘er out, eh?”

“Yeah, that’s nice for ‘er unnit, take her out for the day, eh?”

Do you see now? I didn’t tell that story to get a pan­to­mime “Ahh­hhh”, I reit­er­ated it to show you that I get “sorry” bol­locks in “real life” almost daily. I don’t need it in my inbox.

I am not a Dis­ab­il­ity spokes­per­son, I am not rat­tling off heart-rendering PR to raise money for char­ity, I’m just blog­ging and I just so hap­pen to have dis­ab­il­it­ies. To say:

“I’m sorry you’re in a wheelchair”

is as absurd to me as saying:

“I’m sorry you’re English”

It is that ridiculous.

Now, there are cer­tain types of disability-related com­mu­nic­a­tion that have blos­somed into one of the reas­ons I love my blog. Being able to talk to people going through sim­ilar things has been amazing.

I went to “Main­stream” schools and as a res­ult, I never really knew any other chil­dren like me. No-one else walked like I did. They didn’t use crutches or have a frame, they didn’t have to wear spe­cial splints on their legs, their knees and feet poin­ted the right way and their legs were straighter and bended and moved how they were meant to. Nobody else had to have Physio­ther­apy while all the oth­ers were play­ing fun ball games and climb­ing on things dur­ing P.E. class. Whenever the other chil­dren had to go to hos­pital or be put in a plaster cast, it was because they’d fallen from the climb­ing frame or crashed their bike, not because they’d had an appoint­ment to see a man with cold hands who thought another stint in hos­pital might be a good idea.

Whenever I did meet oth­ers with dis­ab­il­it­ies (in hos­pital or via out­ings cour­tesy of Social Ser­vices), I was still the “odd one out” as their dis­ab­il­it­ies seemed always so much more severe. They would have speech and/or Men­tal Dis­ab­il­it­ies that meant com­mu­nic­a­tion was either lim­ited or out of the question.

I have always felt as though I’ve exis­ted in a No-Man’s Land: too able to be lumped in with the the usual “Spe­cial Needs” bracket, but nowhere near able enough to cope in an totally “able-bodied”-focused environment.

Other people seem to feel the same: no-one ever really knows how to approach me (you can see people try­ing to judge as to whether I’m men­tally impaired or not), but at the same time, those that know I’m 100% “all there” can tend to “for­get” or are awk­ward when faced with situ­ations that bring on home my limitations.

That’s why I have so much enjoyed the chance to talk to people who are close to someone who is or, who are them­selves, in a sim­ilar place. It’s refresh­ing and com­fort­ing to be able to talk to people and get that sense of “yeah, me too!” or know that when they say they have an under­stand­ing, they actu­ally do.

Such con­ver­sa­tions are a stark con­trast to afore-mentioned inbox-La-La’s that fol­low up their apo­lo­gies with bolt-of-lightening advice along­side an appar­ent “per­sonal exper­i­ence”, which go to the tune of:

“Have you never thought of [insert X Treatment/Y Ortho­paedic Appliance/Z Reli­gion here], because my Great niece’s half-brother’s wife has an adop­ted child whose Birth Father’s second cousin, 3 times removed is Deaf-Blind, has no legs, Tourette’s Syn­drome, 3 nipples and only 4 fin­gers, and he finds it works a real treat.”

As astound­ing as their stor­ies nor­mally are, quite what it has to do with me or my Cereb­ral Palsy, I’m not sure.

It’s not the dif­fer­ence in ref­er­enced dis­ab­il­ity that irks me, but the mere sug­ges­tion that I may be in a wheel­chair under false pre­tenses. As though I should have poked at Google with more per­sist­ence until I found some­thing, Dear Lord, any­thing, that meant by hook or by crook, I wasn’t to be in a wheelchair.

Because look! My Great niece’s half-brother’s wife’s adop­ted child’s Birth Father’s second cousin, 3 times removed does it/has it/prays to it/gives it money/good head/his soul and it works for him! So it must work for you! You don’t have to live this way!

I know bet­ter even though I know sod all about you, your life and your med­ical his­tory, I know the way! You don’t need a chair, look! You can drag your­self along the floor by your teeth and fin­ger­nails just fine! Isn’t that bet­ter? Don’t you feel so much more self-sufficient and independent?

Clearly, to these people, being wheelchair-bound is a fate worse than Death itself. Hmmm… Death…Chair? Death?… Chair? Sorry, my new little Lomax Act­ive with fold­ing frame, quick-release wheels, anti-tippers and tension-adjustable back­rest suits me just fine, ta.

What do these people want me to say? Thank you? Do they think I’m going to sit at my desk and in a bliss­ful moment of blind­ing clar­ity say “Well, slap my arse and call me Charlie! I’ve sat my arse in a wheel­chair for nigh on a dec­ade and I never knew that I didn’t even have to! If only I’d have known it was that easy all along! Well ain’t that a bitch!

When in real­ity, all I get in my head is that 1970’s TV ad for Cadbury’s “Fruit and Nut” with the giant dan­cing chocol­ate bar thing…Sing it with me!

All together now: “Everyone’s a Fruit and Nut-Case!”