Friday, October 26, 2007

Breaking the law, breaking the law

Ages ago I was watching one of those crappy 'Top 100 Worst Videos of All Time' programmes. You know the ones, they're on at the weekend, when you've decided not to go anywhere and are feeling thoroughly shite for whatever reason.

Usually you don't hate yourself enough to sit through that kind of carcrash rehash, but after scoffing cheap takeaway food that has given you uncomfortable wind and not yet having drunk enough alcohol to stupefy you into sleep, you channel hop onto something your sober self would never entertain, like the 'Top 100 Worst Videos of All Time', miserable in your cheap gluttony, and stay there.

The presenter was slagging off this video (Breaking the Law by Judas Priest) where the band break into a bank using the explosive power of, um, their guitars (cynical cough). They make it to the safe, where the lead singer bends some woefully flimsy bars apart only to find - a copy of their video! All that effort to invent a new and innovative use for the electric guitar only to gain a Judas Priest video. Talk about being robbed.

Back in Fangworld, meanwhile, I suppose I need to make some flimsy excuse as to why I've been neglecting my blog lately (ok, all year). I haven't been at home much to watch crap telly because I have power, the power of an electric chair! It's not as powerful as an electric guitar, mind, and I certainly can't rob any banks with it, as the top speed is only 2 mph. In case you're wondering, that's about senior shuffling speed. So I have been working, working away, not cooking cheese straws as my New Year's resolution promised. But the hotels I usually stay in cook such awful breadcrumb coated food that I prefer to buy my dinner at Marks and Spencers instead. They make pretty decent cheese straws, so I've given up on that one. Zooming in and out of M&S food halls all over the south east, in my little powerchair.

The chair is little because its an 'indoor only' chair. Whereupon we come to the snag. There has to be a snag, doesn't there, because being disabled, at the mercy of the support services, them letting me have something I actually NEED, to do with what I ACTUALLY NEED TO DO, would be only COMMON SENSE, and as you've probably gathered if you've read my blog before, my local services don't have any common sense.

To this end, earlier on in the year, I found myself staring at freedom, in the form of the new wheelchair that had just been delivered, and a form. A form I had to sign saying I could only take possession of the new wheelchair, that my consultant had said I needed all the time, if only I promise-promised cross-my-heart-and-hope-to-die that I wouldn't do the following;

Use the wheelchair in my (fully ramped and wheelchair accessible) conservatory

Use the wheelchair in my (fully ramped and wheelchair accessible) back garden

Use the wheelchair to go to my (fully ramped and wheelchair accessible) front garden, not even to go to just the end of my front garden path where the fish and chip van parks on a Friday night. Shit, eh?

And worst of all

Use the wheelchair outside, in my (fully ramped and wheelchair accessible) vehicle, to go ANYWHERE that wasn't my bedroom, bathroom, living room and hallway.

So that's my life enabled then - NOT. Apparently, apparently it's something to do with the fact that although I am educated to degree standard, have no cognitive impairment, sight impairment or any other impairment apart from NOT BEING ABLE TO WALK ANYWHERE, I shouldn't use the VERY THING I NEED TO HELP ME BECAUSE I CAN'T WALK ANYWHERE, in case I cause myself harm. Because, why? Why? Would crawling or falling over be so much better then? Oh no, it is - the technician told me with a perfectly straight face - for my own safety.

Apparently some crip (who luckily for them is dead now because if they weren't I'd be havin' a word...), once drove their NHS funded wheelchair into a pond. And died. Apparently according to the wheelchair service. On that basis, the wheelchair service got sued and blamed for this person's untimely death. (They must have spent less on their legal defence than the price of a pressure relief cushion).

Can you see a flaw in this anywhere? Who'd have thunk the pond diving cripple made a bad judgement of his or her own? Do they ever think that sometimes we think for ourselves? (Ok, so deciding you're going to go swimming in your garden pond wasn't a great decision, but...) Oh no! It was blamed on the wheelchair service, something about their misinforming this person that their new wheelchair could swim, apparently, with the result that they have decided none of the other disabled people in the whole of the country can be trusted to use their wheelchair properly - i.e. at all. So now to cover themselves, apparently they are forced to make sure when people who have been waiting years for a wheelchair finally get one, that they have to basically not use it, in case they die and someone blames the wheelchair service - and here's the clincher - because if someone uses their chair wrongly and dies and the wheelchair service get sued again THE LEGAL BILLS WILL CLOSE THE ENTIRE WHEELCHAIR SERVICE IN THE UK DOWN FOR EVER AND ALL THE CRIPPLES IN THE LAND WILL HAVE TO GIVE BACK THEIR EQUIPMENT AND NEVER HAVE ANY HELP AT ALL FROM THE WHEELCHAIR SERVICE FROM NOW UNTIL THE END OF TIME, ALL BECAUSE OF THE SELFISHNESS AND WILFULLNESS OF ONE STUPID CRIPPLE WHO WOULDN'T FOLLOW THE RULES THAT WERE ONLY THERE FOR THEIR OWN SAFETY.

"Now Ms Fang, you wouldn't want that to happen, would you?"

Can you smell something?

Honestly. I couldn't make this stuff up. If I ever had a disabled child, I would tell them this tale if I wanted to give them nightmares. But this is what the technician told me on that day, a day that should have been full of new horizons. Sign the form and promise. Sign it now, or we'll put it in the van and take it away again and give it to somebody else.

I did seriously think about crying and saying no and stamping my foot, but I didn't, because this year I have also been diagnosed with osteoporosis (Yeah. I told you I was feeling shite). I signed the goddamn form. It felt like a little piece of my soul had been torn off. The technicians got in the van and drove away, leaving me with the phone number of the manufacturer on a badly photocopied instruction booklet. I felt so crap about giving in I stayed at home and did as I was told, being miserable about it and signing the form, watching crap television programs about metalheads robbing banks by the power of their guitars. I read the manual and it told me all the usual stuff – don't run the battery down, don't modify it without help from your wheelchair technician, and above all else, don't try and swim in your new powerchair. Funnily enough the booklet seemed to suggest that as long as you didn't tax the chair's capabilities, it could be used outside. And safely transported in the kind of vehicle I happen to own. A couple of calls to the manufacturer confirmed that although speed wise you could be overtaken in the street by an arthritic granny the battery had a range of 7.5 miles.

That night the fish and chip van arrived at its usual time and I boldly went to the end of my front pathway to get some cod and chips. Damn, it was so nice to be outside! It occurred to me that owing to some ridiculous boundary rule the wheelchair service who looks after me is not in the county I live in, but one next door. And that the people who come out to visit me often say things like 'You live very far away, it's taken me ages to get here' and 'I don't usually come out this way apart from visiting you'. So that night, I ate the chips my new chair had enabled to fetch from a few feet outside my house, and pondered this.

Next time I was offered some work in a town far away from home, I took a deep breath and stashed the powerchair in my van instead of taking the manual wheelchair. Words can hardly describe just how well I felt after completing my work - I still had energy to boldly go! I went to Marks and Spencers and bought some cheese straws and a packet of luxury biscuits. Like the cod and chips, they tasted particularly wonderful. So the next night I did it again. And the night after that. And the next, and the next. Being independent is quite more-ish, isn’t it?

When I got home, the first thing I did was drive the chair into my conservatory. No Pythonesque hand came down from the heavens to smite me. Next day I went into town. This was the day I found out that at top speed I could be overtaken by pensioners (they were too busy deciding what to buy in the M&S food section to try overtaking me there) but to be honest, I didn't care - and I still don't care now. I just boldly go and to hell with the consequences. What is the world coming to when it's taken me 6 years of struggle just to get around easily again? Should I feel guilty that I'm enabled to sneak around doing such subversive activities like going into my conservatory, down the front path to the fish and chip van, shopping and holding down a job? Am I hurting anyone by carefully going where I can? Even if I was to get caught tomorrow and made to hand over the powerchair for my errant behaviour, I can honestly stay that to just do these things for a little while has been worth it. It feels like I've stolen the gold, and I'm telling you, it feels a helluva lot more valuable than a lousy Judas Priest video.


Anonymous said...

"Breakin' the law, breakin' the law!!"


I wish a fish and chip van would park outside my house on Friday night. Although I have to say my carer does make exceedingly good home-made chips.

(I'm getting a new power chair soon but I'm trying to keep it quiet until it gets here in case I jinx it, so shhhh!)

But, the main thing I wanted to say is: Hurrah!! You're updating again!! More goodness for me to read and feel guilty when I don't update my own site!! More exclamation marks!!


Carly and Chelsey said...

Hi. My name is Chelsey. I just discovered your blog, because my friend and I are starting a blog about our own issues with disability (

We are hoping to eventually start a webmag of articles, fiction and other things pertaining to youth with disabilities, but for now we're starting out with the blog.

Anyway, hi there

AF said...

Hiya! Will stop by and see you soon Carly and Chelsey.
Timmargh... hope you don't live to regret reading the saga of the next few weeks...