Wheelistically @ Claire.NU

Last week I was in unfa­mil­iar ter­rit­ory. Or rather, ter­rit­ory I had long since thought I’d left behind me.

A day was spent out shop­ping in the Janu­ary sales in a town I don’t usu­ally frequent.

A cash­ier in Boots refused to serve me, ignor­ing the items I’d placed on the check­out in front of her and my out­stretched hand as I went to pass her my loy­alty card; her gaze fixed res­ol­utely above my head at K who stood behind me. She only checked out the items once I’d passed my card to K for her to hand over, then sud­denly she man­aged to spring into action. It happened in a mat­ter of seconds, prob­ably not even long enough for any­one out­side of the imme­di­ate exchange to notice, but notice K and I did.

The wait­ing staff at a res­taur­ant did not once acknow­ledge me as a pay­ing cus­tomer, sep­ar­ate entity or even human being. I tried des­per­ately to make eye con­tact, but was stealth­ily evaded. When tak­ing our order, she did not even turn her head to take mine, but instead con­tin­ued to look at K expect­antly until K ordered (reluct­antly) on my behalf. (K never orders/speaks for me). I was not greeted nor noticed, even when I thanked the staff for bring­ing my drink and then, my meal.

I was invisible.

Except for when I browsed leis­urely in clothes shops. On those occa­sions, I appar­ently spawned an addi­tional head. Such a sight was I when shop­ping in River Island, that all foot-traffic ground to a halt. Even the staff we rubber-necking it. An entire group of young women, not far from my own age, stopped dead in the middle of a con­ver­sa­tion to gawp silently and open-mouthed as the Spas­tic tain­ted their trendy retail ther­apy ses­sion to per­use the scarf rack and try on a hat. Admit­tedly, the hat was a poor choice and didn’t suit me, but I still main­tain that their reac­tion was a little excessive.

I left quickly without pur­chas­ing any­thing, remind­ing myself that this is why I shop almost exclus­ively online for clothes and shoes. Espe­cially shoes. I’ve learnt over the years that my feet hold a par­tic­u­lar interest and people aren’t shy about it. They will quite lit­er­ally stop what they are doing and watch intently to see how I take shoes on and off — if I need assist­ance this is an added bonus — and to see what my feet look like. Is she deformed? Can you see if there’s some­thing wrong with her by her feet? Are they twis­ted? Life­less? With bits miss­ing? Does she have proper feet? Pros­thet­ics? Hooves?

These situ­ations and the point­ing and whis­per­ing aren’t new, far from it. I’ve often joked that if I ever became fam­ous, I wouldn’t notice the dif­fer­ence as it’s not as if I can go about my busi­ness unnoticed and without attract­ing an awful lot of atten­tion now any­way. I sup­pose the reason that day in par­tic­u­lar bothered me was due in no small part to it’s intens­ity and relent­less­ness. I don’t think I have had a day with so many sig­ni­fic­ant reac­tions, in such a small space of time, in years. And it really knocked me.

But, K and I have a Stand­ard Pro­ced­ure in these situ­ations: Carry On Regardless.

Yes, I could’ve made some form of snippy com­ment or belittling remark to those people on that par­tic­u­lar day, but I’m very wary of com­ing across as one of those Dis­abled people. You know the ones, we’ve all met them. The ones with a chip on their shoulder that are con­sumed with an atti­tude prob­lem and are con­vinced that every­one has a prob­lem with their dis­ab­il­ity and are treat­ing them as inferior (even when they don’t/aren’t). We call them The “I Can Do It Myself” Bri­gade: those that are hos­tile and read well-meaning mem­bers of the gen­eral pub­lic the Riot Act if they so much as even dare to hold open a door or offer to reach some­thing from a shelf. Mem­bers of the “I Can Do It Myself” Bri­gade can often be found dangling from 3 flights of escal­at­ors by their teeth whilst scream­ing “NO, IT’S OK — I’M FINE — I CAN MANAGE!”, so determ­ined and cour­ageous are they, that they would rather risk life and func­tion­less limb (or just make a cir­cus of them­selves) than actu­ally swal­low their pride and ask someone to press the “Call” but­ton for the lift on their behalf.

I really try to make a con­scious effort not to be an ICDIM nut­ter. After all, people offer­ing to help their “fel­low man” is a rar­ity — and any­way — they’re only try­ing to be nice. In most cases, their help is in fact very much appre­ci­ated. And even if they do fuss and cause unne­ces­sary palaver, it’s always worth remem­ber­ing that their inten­tions are good and well meant even if they’re a little heavy handed. It costs noth­ing to be polite and when in the (few) instances I didn’t need the help offered, I’ve always been sure to decline politely with a sunny smile and to let them know how much I (really do) appre­ci­ate the offer and I’m not at all offen­ded by it.

So many times, I see people look­ing over at me and it’s writ­ten all over their face: they can see I’m strug­gling and want to help, but daren’t get involved in case they do some­thing wrong or offend me by offer­ing. As we left the above men­tioned res­taur­ant, a suited man on a work lunch eyed us nego­ti­at­ing the heavy, solid wood, exit doors with the wheel­chair and numer­ous bags of shop­ping. Judging from his body lan­guage, it took sev­eral moments of internal wrangling before he coaxed him­self out of his seat and kindly offered to hold open the door. At the end of our exchan­ging thank-yous, the nice man added apo­lo­get­ic­ally: ‘Hope you don’t mind, it’s just I didn’t really know if I should — you never know if it’s the “right thing” to do, or not.’

That just made me feel so sad.

It’s one thing to be an out-and-out ignor­ant arse — yes, those grind me down — but to think that even the nice, genu­ine people are now being forced into a pos­i­tion of social ignor­ance through fear of viol­at­ing some hair-brained notion about what’s “polit­ic­ally cor­rect” or the right way to “handle” or be “aware” of those with Dis­ab­il­it­ies. I can’t help but think that some of these ideas have gone so far, they’ve actu­ally come full-circle and are now bit­ing us on the arse.

After all, what could pos­sibly be so wrong offer­ing as simple as help­ing hand?

I sel­dom feel Dis­abled. Admit­tedly, there’s plenty I can’t do and/or that I need help with in order to do. And, in that sense it is those things that allow me to be defined as Dis­abled, but it’s never those things that actu­ally make me feel Dis­abled. I look at those things almost as if they were per­son­al­ity traits: just some­thing that comes with being Claire. I’ve never known any dif­fer­ent, so I identify those things inex­tric­ably with what it means to be me. The only times I ever tend to feel Dis­abled the most is when out­cast socially.

Why?

Because social, I can “do”. I can com­mu­nic­ate, have con­ver­sa­tions, make friends, have a laugh, have an argu­ment, meet people, make an idiot of myself in front of people. All that I can do, regard­less of my Dis­ab­il­it­ies. But when oth­ers use my Dis­ab­il­it­ies as a reas­ons or a means to take away or deny me the chance to do the things I can “do” unaf­fected, that’s when I feel truly and utterly crippled. It’s a feel­ing I don’t think I’ll ever truly get used to as it goes against everything I believe in.

As I’ve grown up and come to under­stand what it means to me to be Dis­abled, I have gradu­ally felt more and more lib­er­ated by my pro­gres­sion from a “wobbly walker” on crutches to full-time in a wheel­chair. I lost my upright stance and my abil­ity to have a bath, but gained my hands, a free­dom from (cer­tain types of) pain and also a sense of “able­ness”. I feel more able now, psy­cho­lo­gic­ally, on four wheels than I even did shuff­ling around on two twisty legs. I view my Dis­ab­il­it­ies as aspects of my life that have helped shape me as a per­son and if I was ever offered the chance to have a “wish” gran­ted, I wouldn’t choose to be able-bodied. Ever.

One of the most import­ant and treas­ured things that K has ever said to me is that even if she had to the oppor­tun­ity to take away my Dis­ab­il­it­ies and make me able-bodied like every­one else, she wouldn’t. She’d never wish that on me, she’d keep me just as I am. To make me nor­mal would change everything about me, my out­look, what I’m pas­sion­ate about, what’s import­ant to me, everything she loves about me, everything that makes me spe­cial, everything that makes me uniquely ME.

My Dis­ab­il­it­ies do stop me from doing cer­tain things, but they also allow me to do oth­ers that I wouldn’t oth­er­wise be able to do and to be a per­son I wouldn’t oth­er­wise be. For a few days, those unpleas­ant exper­i­ences last week made me for­get that and I felt ostra­cised and broken.

Then, my Mum and Step-Dad went to the open­ing night of the UK tour of Cirque Du Soleil (K and I had bought them Box-Seat tick­ets for Christ­mas) and I was reminded of the dan­cer, Dergin Tok­mak — bet­ter known as “Stix”. The first time I saw foot­age of Dergin dance was a year ago after my Mum came home from hav­ing seen a pre­vi­ous Cirque Du Soleil tour and was rav­ing about an amaz­ing per­former that had danced on crutches dur­ing the show.

A couple of Google searches later and I saw him for myself. Never have I been (or do I con­tinue to be) so moved by a piece of dance theatre. Hav­ing con­trac­ted Polio as a child, Dergin has lost what seems to be total use of one leg and par­tial use of the other and yet, he is every inch a beau­ti­ful dan­cer. Grace­ful, skilled, strong, cha­ris­matic and with a com­mand­ing stage pres­ence, it could be said that he is just like his able-bodied coun­ter­parts. But, to say that would do him a great injustice. What draws you in, moves you as he per­forms and sets him apart is how parts of his body move like none of the other dan­cers’. The idio­syn­crasies in his move­ments and cho­reo­graphy pecu­liar to his own indi­vidual Dis­ab­il­ity add to the drama and beauty of his dan­cing. The crutches are not ortho­paedic aids, but exten­sions of his upper body that allow him to cre­ate lifts, spins, forms and moves that are phys­ic­ally impossible for the other per­formers on stage with him — he is a dan­cer that they will never be. Never have I seen such a dra­matic and emo­tion­ally stun­ning piece of Dance Art and never have I seen any­one else truly (and artist­ic­ally) lib­er­ated by their phys­ical impair­ment in such a way.

This lib­er­a­tion is what I strive towards.

Hav­ing been reminded of him, I set about find­ing that foot­age again; The Limp­ing Angel.

It reminds me of who I am and why I was made this way.