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Sod disability rights when you're in agony

by Kate Ansell

22nd February 2006

Readers. For the last two months, I have been on an unplanned journey of self-discovery. I have looked into my soul and discovered a hitherto untold truth. I am ashamed. I am humiliated. When the spasms hit, and my mobility takes a dive, I am rubbish at being a cripple.
I haven't had to worry too much about being disabled in the past year or so. Sure, I have cerebral palsy every minute of every day, but until lately its impact on my life has been fairly minimal.

I know I'm a bastion of disability pride, but recently I've erred on the side of being non-disabled. I'm not talking SuperCrip, I'm talking so minimally disabled that one of my new colleagues didn't even realise I was remotely handicapped-up until she'd worked with me for six weeks. It wasn't a patronising, "I-don't-think-of-you-as-disabled" thing. No, it was a "What-the-bloody-hell-is-this-walking-stick-doing-in-the-cloakroom?" thing. (I had been sitting down a lot, in case you're wondering.)

Not anymore though, oh no.

Three days after Christmas, I was leaning over to retrieve another bottle of red wine from the coffee table when my knee locked in spasm.

Ow.

This used to happen at least once every year: I'm in agony for hours, but I take lots of drugs, and it stops. I'm more wobbly than usual for a fortnight, then get on with my life again, giving a self-deprecating shrug when anyone expresses concern. Just one of those crip things, innit? No big deal, not really.

I used to be cool about this. I used to be very calm and sensible when it happened. Once I even phoned my office to let them know I wouldn't be in, before phoning my GP. It didn't seem that urgent. Get me!
Tablets spilling from a medication bottle
But now you can sod disability pride and civil rights campaigning, because I have turned into a pathetic, self-pitying, needy, navel-gazing embarrassment of a cripple who is in agony, is on diazepam, and can't walk.

Throughout these last eight weeks, I've discovered that not only is my pain threshold much lower than I'd boasted, but I'm also spectacularly awful at dealing with any sort of mobility issue at all now. This is ridiculous. I am a spaz. I am supposed to be used to this. But no. Every time anyone phoned to ask how I was, I whinged at them for hours . I was not the normal me. Relapses change your priorities and perspective on life. What is more important than pain and not being able to move?

Next came the insecurity. This was what really took me by surprise We've all had disability paranoia - well, mine magnified to a terrifying size: "I might just as well give up on life now. That's it."

First, I became a bit agoraphobic about leaving the flat. It might happen again, after all. How could I possibly go to the pub when my knee might lock in spasm? Even going to the Post Office across the park seemed like a quest of unimaginable proportions. My friend's planned birthday jaunt to a top London nightspot was, of course, totally out of the question.

I wouldn't go anywhere without having my spasm-releasing medication within easy reach. Three weeks previously, I'd been on the dancefloor 'til 4.00am without giving it a second thought.

I knew I was being ludicrous. In an attempt to get over myself, I made a list of things that I thought might trigger my spasms. It went:

1. Walking too far
2. Not walking far enough
3. Socialising too much
4. Not socialising very much.

As you can see, it wasn't a very useful enterprise.

Like most of us, I've experienced some disablist discrimination at work. For me, this has been rare, thankfully. My current employers are faultless, but a handful of bad experiences has left me scarred, and anxious that my luck must be about to run out. Surely this latest attack would spell the end of my good fortune?

In my darkest hour, I was wondering what I thought I'd been doing even attempting to have a career in the first place. I mean, why would any employer want to put somebody with spasms on the payroll? I wouldn't. And what was I doing thinking I'd get away with it, anyway? No matter about my glowing CV, I wasn't convinced that I could hold down a proper job ever again. It was the psychological equivalent of flicking through the Yellow Pages looking for basket-weaving classes.

Eventually, after a fortnight, I did make it back to work, but only because I had rent to pay. There were no disasters, but I was getting home and going straight to bed, and generally worrying that my life was about to fall down around me if I pushed myself too hard.

Now I won't leave the house until I know my medication is safely secreted in the side pocket of my bag. Last week, I went out without it ... then realised that was probably a bit cocky, and put it back in as soon as I arrived home. Occasionally, I get a twinge in my knee and panic inwardly; but this weekend I went out dancing again, and nothing bad happened.

Things are getting better. I'm not sure I could tell you the precise location of my medication right now, so I must be properly on the mend. Actually, I really don't know where the pills are. Um, I think they're ... I might go and check. I mean, I'm not worried about it. But just to be on the safe side, I'm going to have a quick look ...

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