Polly Come Quick - It Broke

Cast your mind back all the way to new years eve. As the country prepared to party and light overly loud fireworks Polly and I, exhausted from and at the whim of a week of temporary carers, prepared for a reasonably early night. Carlotta and Abby arrived and got in each others way but somehow got me ready for bed. But then the familiar cry went out, “Polly, Polly, quick. Come!”

The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.

Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”

The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.

Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.

One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'

A Race Apart

I'm -not sure whether to be outraged or amused. I'll settle for a little of both. With England having failed to qualify for Euro 2008 we can all now happily ignore the competition which, aside from messing up the TV schedules, no longer concerns us. Instead those who need their sporting fix can turn their attention to the Beijing Olympics. For a couple of weeks we can watch fit people run around and throw things, jump over things and swim, run and cycle very fast. Great if you like that kind of thing. Many do, and some will even go to the trouble of flying all the way to China to see the games in person. And if they are disabled, don't worry, the Chinese are ready for them.

A special guide has been written for the 100,000 volunteers preparing to work at the Olympic and Paralympics games on how to interact with disabled people. So what sage advice is on offer? Well how about -

"Some physically disabled are isolated, unsocial, and introspective. They can be stubborn and controlling; they may be sensitive and struggle with trust issues. Sometimes they are overly protective of themselves, especially if called “crippled” or “paralysed” Do not use ‘cripple’ or ‘lame’ even if you are just joking.”

That's my comedy routine down the drain. But wait! There's more.

"When you make eye contact, do not fuss or show unusual curiosity. Never stare at their disfigurement. A patronising or condescending attitude will be easily sensed, even for a brain-damaged patient."

The guide for Chinese volunteers at the Games this summer explains that disabled people are a “special group” with “unique personalities and ways of thinking”. They've got me down to a tee. I particularly like this bit -

“They show no differences in sensation, reaction, memorisation and thinking mechanism from other people, but they might have unusual personalities because of disfigurement and disability,”

Unusual personality, yep, that's me again.

To be fair I don't know how much of this is down to translation and credit is due for recognising that many disabled people have special needs and on the whole prefer not to be gawped at. My complaint is that there seems to be an assumption that disabled people are a separate race. The irony in all this is that come the Paralympics it will be the Chinese who lead the medal table.

I'm looking forward to London 2012. Perhaps they'll let me write the guide to dealing with us crips.

“When talking to a person in a wheelchair make sure you pat them on the head and ruffle their hair. Position the wheelchair behind a pillar or behind a row of. people who will stand up and cheer throughout the event. And remember, disabled people are very brave.”