Wheelistically @ Claire.NU

Last year, I got a new wheel­chair. For those of you that have never needed a wheel­chair, this seems a very innoc­u­ous state­ment, but if any fel­low “Wheel­ies” are read­ing, you know what a MASSIVE DEAL get­ting a new chair is.

I have been a full-time wheel­chair user since March 1998; my wheel­chair is not a piece of fur­niture, or even a piece of med­ical equip­ment, it is part of my body. The able-bodied equi­val­ent of me being sep­ar­ated from my chair is an AB-person hav­ing half of their body removed. To me, it is that extreme.

My Wheel­chair

This new wheel­chair is my first ever rigid-frame chair. Fash­ioned from titanium, it is light­weight, dynamic and has enabled me, for the first time in my life, to self-propel full-time out of the house. This seem­ingly small devel­op­ment means that I am no longer one of life’s pas­sen­gers and has had an amaz­ing impact on my con­fid­ence and the level of inde­pend­ence I have achieved. Aside from the obvi­ous advant­ages of not hav­ing to rely other people to “push”, I’ve also found that the way in which other people respond to me has changed since I became more in con­trol of my own mobil­ity. People are now more like to speak to me, rather than the per­son I’m with; they are also more likely to speak to me as a fel­low com­pet­ent adult, as opposed to SHOUTING s-l-o-w-l-y as though I am Deaf, have learn­ing dif­fi­culties and Eng­lish is my second language.

Pro­gress is still on the small scale in that I can only really go out if I know that my route and des­tin­a­tion are rel­at­ively flat and only a short “walk­ing” dis­tance away (I’ve not yet mastered Pub­lic Trans­port on my own yet), but just this tiny taster has a massive sig­ni­fic­ance. Up until six months ago, I had never been out of the house any­where, alone. Ever. I had always needed to rely on a helper or carer of some kind: my old chairs were far too heavy, cum­ber­some and prone to tip­ping, for me to be able to push myself safely. Prior to that, I was a rather pre­cari­ous “wobbly walker” — I used a frame and/or crutches — and was renowned for fall­ing badly at the slight­est provocation.

To sud­denly find myself in the middle of a High Street on my way to get bread and milk, com­pletely on my own and without help for the first time, was sim­ul­tan­eously one of the most lib­er­at­ing and yet ter­ri­fy­ing exper­i­ences of my life. And it happened when I was Twenty-Five. TWENTY FIVE. I’ve had to wait a quarter of a cen­tury for the kind of inde­pend­ence usu­ally bestowed on a ten-year-old child. I still fumble ridicu­lously at check-outs. So used am I to staff talk­ing over my head to K, that it takes me a second to real­ise that — Oh Shit — I’ve got to be the one pack­ing the bag and ready with the money. It’s me she’s talk­ing to/waiting for (as opposed to just vacantly star­ing into space: my default pos­i­tion in these sorts of situ­ations for so many years).

Earlier in the year, you would have dis­covered me flaunt­ing my new-found free­dom by doing such ter­ribly wild things, like loiter­ing in the dairy aisle in the local Co-Op with merry aban­don. (Ooh, what a rebel am I!) How­ever, I’ve since dis­covered that such little exped­i­tions are sadly a sea­sonal affair. Des­pite my best efforts, little things such as snow, ice, mulchy dead leaves and copi­ous amounts of rain play havoc with the local ter­rain and for the last three months? I’ve been stuck indoors, depend­ent, just like before.

Cue me, gutted.

I’ve writ­ten this post count­less times. Writ­ten and rewrit­ten and yet I still can’t find the words. In lieu of adequate artic­u­la­tion, I give you these videos:

When I watch these videos a lump forms in my throat. Why? Because those videos show people doing things that I cur­rently can­not do, but more to the point, things that I never thought I ever could do. Going to the corner shop in the winter, walk­ing the dog, tak­ing a detour over a grass verge, or cross­ing gravel, bark chips, grass, uneven pav­ing, cobble­stones, mud, puddle, ice — all of these things that people take for gran­ted — I find vir­tu­ally impossible. Even in my cur­rent chair.

This amaz­ing inven­tion would give me a level of inde­pend­ence that I’ve yet to even exper­i­ence; inde­pend­ence that could last the whole year ’round.

I want to do this, so much. I want to be able to go on walks with my dogs, rather than send K out with a cam­era so that I can look at pho­tos and videos after­wards. I want to be able to go out and buy things myself rather than hav­ing to order it in, or get someone else to do it for me. I want to take charge of my own affairs and live my life to the best of my abil­ity, des­pite my dis­ab­il­it­ies. I always strive to use equip­ment inde­pend­ently within my home as opposed to rely­ing on phys­ical care and wish to extend this level of inde­pend­ence to out­side my home. It means so very much to me to be able to par­ti­cip­ate as fully as I pos­sibly can, both within my own life and in the lives of those around me.

I don’t want to be a pas­sen­ger in my own life any more.

And that’s why I’m writ­ing this. Neither Social Care, nor my local NHS Wheel­chair Ser­vices will help me in sourcing the £400 (GBP) needed to obtain this piece of equip­ment. In provid­ing me with my cur­rent chair, they have met their duty to cater to the most basic of my mobil­ity needs. I’ve have searched far and wide for grants and third sec­tor fund­ing in my area, but as I am not a registered char­ity, or a “group” that serves the wider com­munity, for the most part I am not even eli­gible to apply for assistance.

So, I’m reach­ing out online and launch­ing The Wheel­ist­ic­ally “Free Wheel” Appeal.

I will be selling my pho­to­graphy and self-designed greet­ings cards*, with 100% of the pro­ceeds going towards my “Free Wheel” Appeal. There’s talk of K doing a Sponsored Pyjamas-Day at work.

If you can and want to help, please do. Buy a pack of greet­ings cards, do a “sponsored” some­thing — or, if you were plan­ning on get­ting me some­thing for my impend­ing birth­day, please con­sider donat­ing, instead. Every penny counts, even just a small amount can make a big dif­fer­ence to the tar­get and a even big­ger dif­fer­ence to my life and future independence.

Tar­get: £400

*Details com­ing soon!