Saturday, 31 May 2008

What A Performance

Last night, for the first time in quite a while, I took to the stage. Well, more accurately I took to the floor in front of the stage because the stage wasn't accessible. I was doing a turn at the Lantern Arts Centre in South London. It is always nerve racking performing at small art centres because you are never sure if the cast is going to out number the audience. I'd invited some friends to perform a few sketches I have written over the years, so the audience had to number more than seven. I'm glad to report that it did. The show, a mix of sketches and anecdotes, went reassuringly well and I was particularly pleased with the way new material about the laugh-a-minute side of disability went down. After the show several people shared with me their own, or their family's, experiences of carers turning up at half past six to put them to bed or the bewildering and contradictory behaviour of social service departments. It was surprising the level of recognition there was amongst an audience who had not come specifically to see an act based on disability issues.

Working at the budget end of the performing arts arena does have its challenges. Polly was recently performing an extract from her one woman show Woman on a Mission at, let's call it a Ladies Twilight Guild meeting. Her comedy routine was prefixed with an announcement that one of the members had just died and that the soloist for the afternoon would not be coming because her husband had a bladder infection. Polly launched into her routine and despite the hostile glare of one disapproving lady all was going well. But then, as she started a monologue, she watched one of the audience slump forward and rest her head on a table. Not wanting to embarrass her by drawing attention to her Polly carried on. The ladies surrounding the slumped lady began to rearrange chairs and lay her down. Polly continued. Then the chairs were moved again and the lady was lowered on to the floor. Polly glanced across to the chairlady who smiled encouragingly and mouthed, “She's a diabetic. She's always doing this. I don't know why she bothers coming.” Faced with this implacable attitude Polly, with increasing concern for the lady who had now thoroughly upstaged her, reluctantly launched into a song while all the time more and more people fussed over the now unconscious woman. Polly glanced desperately at the chairlady who indicated she should carry on. He who pays the piper etc. Polly ploughed on. . . right up to the moment when the ambulance crew burst in. As she ground to a halt she turned pleadingly to the chairlady and said that she felt it was best to stop at this point. The chairlady stood and turned to Polly and said primly, “Yes, I think that would be best. Don't you?”

Thursday, 29 May 2008

My Aim Is To Inspire

It has come to my attention that some people think the title 'How To Be An Inspiration` is in some way ironic, and that I don't really consider myself Inspirational. Nothing could be further from the truth. Inspiration is my middle name (actually it's Harry but let's not quibble). So, how has this misconception come about? Probably because up until now I've kept that side of my life private because I'm an innately modest and humble person.

Being disabled, it is beholden on me to make the able-bodied feel good about themselves. Obviously the best way to this is to raise money for their charities. But think how much better they'd feel if they cut out the middle man and gave it directly to the disabled person himself. Shall we give it a go? I've got Pay-Pal.

Another role I have is to go on fantastically difficult or dangerous adventures to raise funds and, of course, raise awareness. You will probably remember my attempt to cross the Atlantic on a pedalo. And I'd just like to take this opportunity to thank the coastguard and to say that I've taken on board their advice that a bottle of sun screen does not constitute sufficient safety equipment for a voyage of that length. It's a pity that the money raised was cancelled out by the cost of the air/sea rescue.

You will also remember my attempt at the London Marathon. I would like to say, here and now, that they should make it clearer that the wheelchair race is not open to Invalid Scooters. I think that I should be applauded for managing to shuffle 26 miles on my bottom, and although I'm sorry for the resulting traffic chaos, I still think 19 weeks is a pretty good time.

I suppose I'm most proud of the time I led that expedition to the South Pole. The so called 'experts` said it couldn't be done; leading a group of blind quadriplegics across the Antarctic using only a husky and some Zimmer frames. The fact that they were right does nothing to detract from the sense of achievement I felt at losing so few people. Of course next time I will insist that expedition members pack more than just a pac-a-mac, some woolly mittens, and a Thermos flask.

So, I think I've proved my point. As a disabled person I'm inspirational, which is why I feel inspired to invite you on my next awareness raising adventure, sign up now if you want to join me in crossing the Sahara. You'll have to bring your own flip-flops.

Wednesday, 28 May 2008

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.”

Tuesday, 27 May 2008

Holiday Arrangements

We have been planning our holiday; we're going kayaking up the Amazon river in boats we've made ourselves from hollowed out logs using traditional methods and tools such as the jaw bone of a Jaguar we've hunted with blowpipes. We will be camping on sandbanks and only eating food we've gathered for ourselves. Oh no, sorry, that was last year. We're going to Wales. My mum has a little house in a holiday village at Freshwater East near Pembroke. It's very nice, just a couple of minutes walk to a child friendly beach, and surrounded by more castles than supermarkets.

The downstairs of the house is accessible with the judicious use of a wooden ramp custom made by our friend, Martin. There is a downstairs bathroom and a bed in the corner of the lounge come dining room come kitchen. When it stops raining it is a lovely place to be.

Of course, going on holiday, like most aspects of my life requires advanced planning. In the past Polly has done the work of two carers, getting me up and putting me to bed, as well as the usual day to day care which, because we are away from home and our usual facilities, is that much more difficult. A few years a go we hit upon the idea of hiring in homecare while we were in Wales. Easier said than done, but we managed it (well to to be honest Polly did) and it made a huge difference. It cost a fortune but at least Polly actually got to have a holiday. And then, in conversation with a social worker, we learned that we could temporarily transfer our 'care package` to Wales at no cost to us. Yippee! Last year it worked beautifully and the Welsh agency went above and beyond the call of duty. So this year we thought we'd do the same. Simple. Of course it wasn't.

Social services suffered a kind of collective amnesia. “Are you sure that's what happened last year?” And “Er. . .So how do we arrange that then?” And “When exactly will you be moving to Wales? We'll miss you.” And eventually, “Ah, Polly, we've arranged care provision for your son... Your husband? Are you sure? Really? I just assumed. . .”

In the mean time – it's half term and so the boys are at home. Just after lunch today S, who was sat next to me, was concentrating very hard and counting, “23. . . 24. . . 25. . . 26. . . 27.” I asked him what it was that he was counting. He looked at me in surprise, rolling his eyes at my ignorance. “Numbers, Daddy. I'm counting numbers.” He sighed. “1... 2... 3...”

Monday, 26 May 2008

World Class

It is a Bank Holiday here in the UK and therefore (at least here in Surrey) the weather is typically grim. The sky is a milky white, as if some one has sealed us in with a Tupperware lid, and there is a fine drizzle alternating with driving rain and a high wind. Fortunately we hadn't organised a barbecue. Instead we headed for Wing Yip, a local Chinese restaurant to meet up with some friends, Rob and Carolyn and their 8 year old son. The restaurant is part of a complex that includes a Chinese supermarket where, if you lack anything better to do, you can gaze at tankfuls of lobsters, catfish and eels. It's like visiting a free aquarium. In the restaurant we ordered all sorts of exciting dim sum and things in rice and noodles. I made no attempt to use the chop sticks since I didn't want to go hungry.

I was talking to Rob about writing this blog and saying proudly that it was being read in quite a few countries around the world including India, Hong Kong and Australia according to the clever people at Google Analytics. Rob, I'm glad to say, said he regularly read the blog, usually when he was at work. And then it dawned on me, Rob is an airline pilot. Guess which countries he regularly flies to. Sigh.

So, if you are reading this outside of the UK, and you are not an international airline pilot keeping passengers waiting at the airport while you browse the internet, then do reassure me and email me or leave a comment. You can't all be Rob.

Saturday, 24 May 2008

Cinema Magic

In the last few weeks I've been asked the same question twice. Or more accurately Polly has been asked. “Does he go anywhere? A day centre perhaps?” No I don't go to a day centre. Nor do I weave baskets, play Whist, or enjoy Bingo. For crying out loud, I'm in a wheelchair not my dotage. I'm even allowed out unsupervised - and that's official. Fiona, from the wheelchair service, came to check that I had the Samba Quickie under control. She wanted to check that I didn't run amok and mow down pedestrians, that I could cross the road safely (using the green cross code), and that I could resist the temptation to race mobility scooters down the High Street. She seemed satisfied but I was disappointed I didn't get a certificate.

Just in case you are worried that I never get out, on Thursday I went with Stewart, who arrived after a hard days crime fighting, to the local Vue cinema multiplex. I love the cinema and try to go at least a couple of times a month. You would probably expect me, with my arts background and esoteric literary tastes, to frequent Portuguese art house films dubbed into French with German subtitles, whereas I actually only go to see movies with lots of explosions. On Thursday it was the new Indiana Jones and the Kingdom of the Crystal Skull movie, which certainly met with my exacting expectations for big budget action packed mayhem and don't let sneering internet nerds or the occasional world weary film critic put you off, if you enjoyed Indy's previous adventures then you will enjoy this one every bit as much.

Harrison Ford makes no pretence at being as young as he once was and the film makes several references to this, pairing him with the much younger Shia LaBeouf as new sidekick Mutt. Don't worry though, Indiana Jones proves as indestructible as ever as he takes on the Commies in paranoiac 1957 America. The McGuffin for this adventure is the Crystal Skull of the title and we've moved from religious artefacts to an alien one but the winning formula remains the same; lots of perilously narrow escapes, breathlessly frantic chases and wise-cracks and whip-cracking dialogue. There are some wonderful set pieces including an escape from an atomic bomb and a cliff diving amphibious car, as well as genuinely scary scenes such as one involving flesh eating soldier ants.

It's not a perfect film by any means. There are some strange inconsistencies regarding the magnetic properties of crystal that bothered me throughout the film. A cloth seems to have a miraculous dampening effect on a hitherto super magnet. (Watch the film, you'll understand.) But that's a minor quibble; if you can accept that a 65 year old man can be shot at 10,000 times, fall hundreds of feet without being hit or breaking a single bone then the odd breach of the laws of physics shouldn't bother you too much.

If you want to spend a couple of hours watching a well paced, action filled movie featuring an iconic hero then you won't do better than Indiana Jones and the Kingdom of the Crystal Skull. Enjoy.

Thursday, 22 May 2008

Who Cares?

I've just been assessed again. I'm telling you, I've never had so much attention as I've been getting recently what with Tina the district nurse, the risk assessment, and: now yet another extensive form that seems to have an unhealthy interest in my continence. This time it was a lady from the care agency that's taking over my care whether I like it or not. Our local authority, like most others in the country, is farming out it's home care provision to agencies. The sole reason is, of course, to save money regardless of the impact it has on its clients (as we are now called). In the past we've had agency care and on the whole it has been excellent, but it did have one major drawback; you were very reliant on a single carer. This was because agencies need to take on as many clients as they can to be economically viable therefore each carer is spread as thinly as possible and, in some cases, worked to a point of near exhaustion.

Over the years I've had some fantastic carers. First there was Jill who came when I lived alone and didn't need much personal care. She would go shopping for me and do the laundry and cleaning. She was a lovely lady who would regale me with stories of her husband's search for employment and her own health. She was a martyr to her feet, back, legs, joints and, indeed, almost everything else. She was wonderful and I was very fond of her, She did, however, take against any other women in my life. For a while I was in a relationship with a girl called Roz, a student teacher. Jill,, with out saying a word against her, engaged in a subtle form of warfare with Roz, whom it must said was ready for battle. If Roz did anything that Jill considered her domain, such as dusting or vacuuming, she would sniff dismissively and do the job again. In the kitchen cups and mugs would move bewilderingly between cupboards as each of them sought to establish dominance. When, eventually the relationship ended Jill set her lips in a straight line and said “Pity”, and never mentioned her again. At least I knew where my mugs would be.

When Polly came on the scene she found that winning Jill over was a priority if our relationship was going to go anywhere. Winning my family over was child's play in comparison. She started on a charm offensive, appreciating everything Jill did, seeking advice, and marvelling at how she had put up with me for so long. It worked and before long I was trapped in a pincer movement as they worked together to reform my bachelor ways. Even after we moved out of Jill's work territory( she didn't drive and would only take clients she could walk to), we continued seeing her on and off for years.

And now we are going to have another set of people to get use to and integrate in to our lives. I'm sure they will be very nice, but the truth is I am perfectly happy with the people I have now. They like coming here and we like having them. Change is never easy, especially when it is forced on you from above. And it will take them a while to learn where the mugs go.

Tuesday, 20 May 2008

A Fine Romance (part two)

The story so far...

Our wheelchair bound hero has met the pretty, bobbed haired nursery nurse come actress Polly, on an Improvisation course in Hammersmith, West London. Said bobbed haired, smiley person has inadvertently broken our hero's wheelchair controller but her ability to find 20 uses for a traffic cone has begun to win his heart. Now read on as. . .

Polly drops a bombshell.

After the Improv course I met up with Polly on and off at a discussion group held on Sunday evenings at the Methodist church in Wimbledon where we debated how many angels could stand on the point of a pin and whether it made a difference if they wore trainers. Polly was attending the Desmond Jones School of Mime and Physical Theatre and I was still touring with Stripes Theatre Co. This meant we could go several weeks at a time with out seeing each other but when we did we found ourselves sitting next to each other and chatting happily. And. then she told me she was going to move to Romania and work in an orphanage.

I blame Anneka Rice. On Christmas day, 1989, the dictatorial leader of Romania, Nicolae Ceauşescu and his wife, Elena were executed for crimes that included genocide and the illegal gathering of personal wealth. Please note – Anneka was not responsible for the overthrow of a communist dictator. But she was responsible for the TV programme Challenge Anneka where she and a team of volunteers took it upon themselves to fix up an orphanage in Bucharest with only a few cans of paint and some sticky back plastic. It made great television; very emotional and inspiring and it helped bring the plight of the orphans to the attention of the world. And then the world moved on. Except Polly and a few others.

Now you are in a difficult position if you are the would be paramour of someone who is going to save the little baby orphans with no mummies or daddies. You can hardly say don't go, my need is greater than theirs. I just had to let her go. I didn't care, she could go if she wanted to. No skin off my nose. It wasn't as if we were going out or anything. I promised I'd write.

A little while later a local group were collecting bits and pieces to fill a lorry to send to Bucharest. There were lots of teddy bears and knitted cardigans packed in to shoe boxes to be handed out to cute little orphans. As it turned out most of the boxes were “distributed' to members of the underpaid orphanage staff. I took the opportunity to send a letter and a Dundee cake in a tin to Polly. You can't go wrong with a bit of fruit cake. A week or so later I received a letter back, which was funny and to be honest a bit flirty. I replied in kind.

By Christmas we were writing to each other two or three times a week. The letters were increasingly intimate but we were in that 'not quite sure` where we stood with each other stage. And then I got a letter signed 'With love from Polly and Bob`. Crack – that was the sound of a heart breaking. I'd faffed about for too long and she had met some orphan loving do-gooder who probably wore sandals and knitted his own muesli. I wrote back and casually inquired after Bob. She wrote back and said he was well. Bugger.

On February 12th 1992 Polly rang me from Romania, almost exactly a year after we first met. She had had enough. She told me she had something to say and she didn't expect me to say anything back but that she'd been thinking about it a lot and she thought she was in love with me. Cue twittering bird song, angel choir and fireworks. Hang on, what about Bob. Bob, it turned out was a cat she had adopted.

Over the next five months we wrote and rang each other frequently. Since it was almost impossible to get a phone line out of Romania I mostly rang her. It is 1300 miles to Romania, the same as the number of pounds my phone bill was. Worth every penny.

Polly came home in July 1992 and we were married in the September of the following year. There you are Laura, I hope that satisfies your curiosity. One day I will tell you about our honeymoon. We only used two out of three of the emergency services.

Monday, 19 May 2008

A Fine Romance

I received an email from fellow blogger Laura, author of Yet Another Never Updated Blog (YANUB), who appears to be an incurable romantic. She wrote -

Stephen, I sense a romantic tale to be told in how you courted Polly. Please indulge my curiosity. Did you see her across the way and wheel on over? Meet her at the pub while you were with some other girl? Steal her from your (former) best friend? Or did she take one look at you and decide that your bachelor days were numbered, whether or not you knew it?


In 1991 I was writing for and touring with Stripes Theatre Co, a small company that toured churches, schools, youth events and conferences all over the country. I'm sure that at some point in the future I will write about my time with Stripes and the highs and lows of travelling around the motorway network of the UK but for now we'll stick to romance. Every now and then we would spend a few days on a theatre skills course to stimulate new ideas. In February of 1991 we had booked our selves in for an Improvisation course at the Desmond Jones School of Physical Theatre and Mime in Hammersmith. London.

One of the actors, Karen, was a qualified teacher and would sometimes act as a supply teacher at a local primary school between gigs, tours and rehearsals. We would often pick her up after school on a Friday and drive for several hours, set up, perform, find our digs, run workshops and perform on Saturday and Sunday, pack up and then drive several hours back home, usually arriving at 3 or 4am. Karen would then crawl into school and teach for the week until Friday when the whole process started again. At the time of the Desmond Jones improv course she was supply teaching in a school nursery and was being greatly helped by the resident nursery nurse, Polly. Polly would run the nursery while Karen tried not to doze in the corner. They became good friends as Karen appreciated the support Polly gave her and Polly appreciated the way Karen didn't. interfere with the way she wanted to run the nursery. At the time Polly was contemplating a career change and was coincidently intending to spend a few months training the Desmond Jones school. When Karen learned this she invited Polly to attend the Improvisation course with us. Polly was delighted and said yes. It was a fateful decision.

Now Polly and my version of events differ here. But since I'm writing this, this is the True account of what happened. It was a chilly February morning but with a song in my heart I drove my electric wheelchair out into the car park at the rear of my block of flats where the large white van the company owned was parked waiting for me. My colleagues, Karen and Caroline, were waiting to load the chair into the van when a small, bobbed haired girl jumped down out of the vehicle and said “Hello”, in a smiley, enthusiastic way. I admit I was slightly surprised to find an additional person in the company but being a warm and fuzzy person I greeted her warmly.

(At this point it should be said, Polly has a slightly different memory of our first encounter. She, wrongly, believes that I was rude to her. She maintains that I said “Do I know you?” in an abrupt manner, as if demanding that she justify her presence immediately. Of course, anyone who knows me will tell you that abruptness, especially first thing in the morning when I haven't had time to finish my first cup of coffee, is completely out of character and that it is much more likely that my natural sunny disposition shone through. Polly maintains that at that point on she decided that wheelchair or not she was not going to be intimidated by me. I thought she was sweet.)

We arrived at the hall where the course was held and joined in the fun. We ran through a series of increasingly more bizarre and complex exercises that required fast thinking and a sense of humour. We often had to work in pairs and you soon worked out who was good at this kind of thing and who should be avoided at all costs. When you have to find as many ways to use a traffic cone as possible you do not want to be stuck with the person who runs out of ideas after saying, “Er... you could use it to stop cars parking.” I found myself pairing up with Polly more and more frequently. The girl could rattle off two dozen uses for a traffic cone as soon as look at you.

At this point I should mention I was in a hired wheelchair while I waited for an insurance claim to be settled. My previous chair had been smashed in an accident some months earlier. This hire chair was a flimsy affair with bits of square tubular metal holding things together. During a particularly physical exercise Polly bumped into me and the wheelchair controller snapped off. I spent the rest of the course with the controller on my lap, operating the chair like a remote controlled car. Polly noticed that the controller had snapped off and asked what happened, I didn't have the heart to tell her it was her who broke it. I was afraid she would be so embarrassed she wouldn't want to face me again. I was beginning to really like her.

Next time: How Anneka Rice nearly ruined things for me and how a cake saved the day.

Saturday, 17 May 2008

A Risky Business

So there I am, sitting on the loo when the front door opens as a carer arrives. It was a quarter of an hour before l was expecting them but hey-ho. A moment or so later the door opens again and the second carer arrives. Then the doorbell goes and two more women arrive. There is a polite knock on the bathroom door and then four women enter. Polly comes in too. So now there are six of us in our not so big bathroom. I pretend I'm not sat on the lavatory. It doesn't work. Every one smiles at me.”Hello,” I say weakly. “Hello,” they chorus.

It turns out I'm having a risk assessment done. There are two carers to do the hoisting, washing and getting me into bed, one to carry out the risk assessment and one to observe, presumably to step in. if it all gets too risky. Every stage of the transfer was meticulously noted down (you put the shoulder straps on first apparently – it might be risky if you didn't). I washed and brushed my teeth without hurting myself or others. (There was a dodgy moment when my electric toothbrush nearly slipped and took my eye out, but l recovered the situation and no one was harmed.) My entourage followed me to the bedroom and assessed the risk of entering. The all clear was given and they hoisted me, using the approved method, on to the bed. I'm happy to report that nothing untoward occurred and that it was deemed risk free enough for me to go to sleep. Phew!

So now I've got an evening care plan being drawn up. Carers will be able to refer to it and know exactly what they need to do to get me safely to bed with out hunting me or themselves. I'm only sorry I forgot to mention that I usually spend a few minutes juggling flaming razor sharp petrol powered chainsaws before I get ready for bed and that I expect the carers to help me light them.

Thursday, 15 May 2008

A Backstroke of Luck

Last night I took S to his swimming lesson at the local leisure centre. Both my sons love swimming and are confident and capable in the water. S has a swimming teacher called Ben who makes the lessons great fun as he makes them walk the plank, pirate style, and blow bubbles as they kick and splash. As with many things I do with my children it reminds me of my own childhood and these swimming lessons are no exception.

Sport, as you might imagine, has never been my strong point. At primary school I was always last in class races and my only contribution to playground football games was to be what we called 'a goal hanger' and take opportunistic pot shots at goal. At secondary school we had P.E. inflicted on us at least once a week. Even though the Muscular Dystrophy was beginning to become evident in my gait and posture for the first three years I had to endure this weekly nightmare. The worst times were during the winter season when we had to play Rugby, a game so violent and pointless I'm surprised they didn't equip us with flick knives. I made it my mission to come off the field with out a speck of mud on me. I did quite enjoy swimming though.

Our secondary school had its own pool, some 30 yards by 15 yards of chlorinated ice crystals. We would be expected to swim back and forth across the pool for half an hour before being rewarded with 4 or 5 minutes “free time” where I did my best not to drown. Occasionally we'd do things like our 'bronze survival' award, which involved picking things up from the bottom of the pool and making a life preserver out of a pair of pyjama bottoms. Amazingly I managed to attain my half mile distance swimming award.

But my greatest swimming achievement came at some ghastly inter-house swimming gala when I was about 14. For reasons totally beyond me I was entered in the 2 length backstroke event. I was racing against Paul and Darren I seem to remember as well as one other. We dived, belly-flopped or fell in to the water and took up our starting positions, the whistle blew and off we went in a flurry of whirling arms and legs, generating more spray than motion. Within moments it was clear that I was not destined to break any records. By the time I reached the turn I was a third of a length behind the others and they were continuing to pull ahead. As cheers greeted the winner I still had half a length to go. The others were out of the pool and dried off and the competitors for the next race were lined up and waiting impatiently before I arrived gasping at the finish. A desultory smatter of pitying applause greeted me as I hauled myself out of the water and found my towel. And then the results were announced. Oh glory. “Loader, Williams and the other one, disqualified for an incorrect turn. Therefore the winner is. . .” The disbelief on my fellow contestants faces were a wonder to behold. That was the last time I ever won a competitive race. Or, indeed, ever took part in one.

S, finished his lesson and greeted me a wide grin. “Did you see me go under the water, Daddy?” I assured him I had. “I'm great at swimming, aren't I.” Like father like son.

Tuesday, 13 May 2008

Bernie, the Bolt

I knew it would happen and now it has. We have started having evening care. So far it's only for two evenings a week, Mondays and Fridays. The whole 'going to bed' process is taking longer and longer and we both agreed that Polly needed at least a couple of nights off a week. (Polly has just looked over my shoulder as I write this and said that I make it sound as if she's going out clubbing on those nights. She doesn't of course, she goes out binge drinking.) (Oh, all right then – it's because she now has to help me go to the loo and adjust my feet on the wheelchair footplates umpteen times a day, gets woken two or three times a night to move my head, legs or shoulder, and make cups of very strong coffee on demand.)

I have resisted evening care up until now, not because I don't appreciate the help, but because the carers can arrive at any time and I don't want to go to bed at half past seven. After some negotiation the care providers have agreed to let me stay up like a big boy until at least nine o'clock so long as I don't want a bedtime story.

Last night two carers duly arrived post nine o'clock eager to help. We all agreed that rather than wait for me to make the laborious and time consuming transfer to the lavatory by myself they would use the hoist. Now it may come as a surprise but I have never been hoisted on to the loo before. So after some moaning about the type of sling that was used, we were under way. As my trousers were removed and I was lifted, semi-naked, by two strange women I muttered my mantra “Dignity, at all times dignity.” Unfortunately when you are aiming to be hoisted on to a toilet accuracy is important. It took several attempts and I began to feel as if I were partaking in a truly bizarre version of The Golden Shot. Bernie, the bolt, please.

Getting in to bed proved every bit as difficult. Some how the sling wasn't placed properly and as I was raised up into the air my naked bottom began to slip out and I was left dangling precariously as the carers frantically pressed buttons on the hoist remote control causing me to swing like a mooning trapeze artist. Dignity, always dignity.

Monday, 12 May 2008

Space for a Story

Just a quick post today. The weather has been gorgeous and the temptation to sit outside and read has been too much. In addition I'm preparing for a show I'm doing at the Lantern Arts Centre later this month. I've been looking through my back catalogue of sketches and selecting a few of my favourites. Wow, I've written some rubbish over the years. Polly's been busy working and helping a friend sort out some stuff, so I've been spending a lot of time with the boys.

This evening I took them to the park to play football. Every father dreams his sons will be great sports men. All I can say is that my children are to football what Wayne Sleep is to Rugby league. Still there's always cricket, tennis, rugby, basketball. . . tiddlywinks.

I've also been doing the bedtime story. Unable to face reading another Horrid Henry story or Tales for Four Year Old Children Who Need To Be Patronised tale, I decided to make one up. M was reading a Horrible History book so I started telling S a story about a little boy called S who was 4 years old and through a series of misadventures ends up first on the moon and then on to the moons of Jupiter with an alien called Alan Zogg. S was thrilled to be the star of his very own story but M was feeling a bit left out. Fortunately the story required a computer games expert S suggested that M should help. The mother ship was saved and we're off to Alan Zogg's home planet but ane about to be attacked by the evil Garak. I now spend a good proportion of my time with the boys fending off questions about what happens next. It's great being a dad! I love it.

Saturday, 10 May 2008

Climb every Mountain

As previously mentioned, Thursday was S`s 4 birthday. It is almost impossible to convey how excited he has been in anticipation of the completion of his 4th circuit around the sun. Imagine a guitar string tightened to near breaking point and then plucked by the plectrum that is his 8 year old brother. As much as the presents S has been looking forward to sitting on the 'Birthday Chair` at nursery. He is not one to shy away from being centre of attention.

M was off school that afternoon. A legacy of the chicken-pox has been a virus that has a similar affect to asthma. He has been given an inhaler and a regime of puffs to be taken at specific times. Under the circumstances his teacher was reluctant to take him out of school to a local playing field and was visibly relieved when Polly said she would take him home. M, deprived of an afternoon running around a field in the baking sun just about managed to contain his glee whilst remembering to cough and wheeze appropriately.

Which is how we ended up at Kidscape that afternoon. Kidscape is one of those indoor play areas that consists of vast multi-coloured climbing frames that look as if marines might use them for training purposes. There were tunnels, rope bridges and a maze of mesh covered aerial passages. Because it was mid-afternoon in term time the place was virtually deserted. We had some lunch and I settled down with a coffee to watch the boys vanish in to the mass of ladders, plastic, wood and rope.

When I was a kid my brothers and I dreamed of a place like this. In addition to the climbing frames there was a mini go-kart track, computers and one of those climbing walls with plastic stuck on it like bits of coloured chewing gum. All we had was the odd round-a-bout and see-saw set on knee grazing, bone breaking gravel and concrete. Typically none of the climbing equipment was wheelchair accessible so my childhood fantasy of scrambling around like a mix of Tarzan and James Bond would go unfulfilled yet again.

M was desperate to go on the climbing wall. He was strapped into a harness and fitted with a helmet. A wire hooked to the harness led to a pulley fixed to the ceiling. and a young girl offered encouragement. M climbed slowly but steadily up and up like a slow motion Spiderman. It was with a mix of fear and pride that I watched my 8 year old son cling to an over hang some 30 feet up in the air. Memories of my own meagre experience of rock climbing came flooding back. I was 13 and the Dystrophy was becoming physically noticeable for the first time. I was developing a distinctive gait, the left leg flicking forward and a slight inward curve of the spine caused by the muscles in the lumber region beginning to weaken. I was attending a church based youth organisation called the Covenanters, which usually met in the school gym on a Friday evening and in the church on a Sunday morning. This week however, in the summer of 1974, we had been taken to the Avon Gorge in Bristol, to go abseiling. The Avon Gorge is one of those places where serious mountaineers go to train. We were in a part of the gorge that was considered relatively safe and easy. We took turns abseiling down a 20 foot drop. I can't say I enjoyed the experience that much but I did it. While others had their go and the grown ups attention was else where some of us went for an impromptu rock climb. I carefully made my way up the cliff, reaching the giddy height of some of 15 feet or so. And then I got stuck. Very very stuck. I couldn't haul myself up to the next hand hold and I was too paralysed with fear to climb down.

In 1974 if you'd mentioned heath and safety people would think you were talking about a magazine featuring naked people playing volley ball. Safety equipment consisted of taking a coat with you in case you got a bit chilly and “best practice” was not using two hands to light a cigarette whilst climbing. If you got stuck like I did there was no procedure to set in motion, no protocol to refer to, you either got down safely or you fell down. Or you stayed stuck. After 15 minutes my friend Paul (he of the marathon saga - see previous posts) noticed I was missing and came to find me. Full of adolescent sympathy he said something along the lines of “get down you idiot, if they (the leaders) catch you we'll all be in big trouble and we'll have to pray about it on Sunday.” And with that he guided me down, foot hold by foot hold, inch by fear filled inch. From that time forth I swore I'd never rock climb again. Now a days that decision is academic since very few mountains are wheelchair accessible, but at the time it was an acknowledgement of my limitations.

M of course didn't get stuck. When he reached the limit of his ability he simply let go and was gently lowered downwards. If such a thing as a climbing wall had existed in 1974 he would still be 30 feet up in the air, clinging on for dear life, and swearing never to climb again. Instead he started right on back up, confident and fearless.

Wednesday, 7 May 2008

Say it Loud

A man walks into a chip shop with a cod tucked under his arm.

“Do you sell fish cakes?”, he asked.

“Of course we do,” said the proprietor.

“Oh good," said the man. “It's his birthday.”

Tomorrow is the little ones birthday. He's going to be 4. Last Saturday we had his birthday party: he shared it with a little girl from nursery., L The theme was Bugs and Butterflies and everyone came with wings and multiple legs. S went in yellow and black stripes, antenna and wings. I thought he was a bee but he insisted he was actually a wasp. The party went really well. Polly did the entertainment and L`s mum Becky hosted the party and provided the wholesome, nutritious food traditionally associated with four year old`s birthday parties. S, who had been counting the days down to the party since Christmas, returned home laden with gift wrapped packages. “Look,” he exclaimed. ”They gave me presents!”

The presents were opened with the help of another girl friend, G. While Polly frantically tried to write down who gave him what, S tore into the gift wrapping with abandon to reveal his haul. There were books, craft kits, a paint your own piggy bank, a recorder and action figures. Oh yes, and a megaphone. That's right, a megaphone: And not just one that amplifies the voice. Oh no. This one amplifies the voice AND distorts it. How much must the parents of the child who gave it to S hate us. What have we done to them that they should take such revenge? Did I accidentally run over their kitten? Don't get me wrong, it was very generous of them, and S loves it. Unfortunately so do all the children who visit.

So thank you dear friends. I'm off to buy your child a kettle drum.

Monday, 5 May 2008

Wheel Meet Again

Getting a new wheelchair was proving difficult; the Samba Quickie's tilt mechanism was only working intermittently and now I had discovered another problem. The armrests were the wrong shape. This may sound like a minor complaint, after all an armrest is an armrest is an armrest surely. Well yes and no. The thing is an armrest is also something to grab hold of when transferring from the bed to the chair and most particularly from the loo to the chair. Try as I might I couldn't get a hold of the darn thing. Not for the first time I stuck on the lavatory. In fact I was stuck between the two. The hoist was not an option because I was kind of lying sideways in an unstable tangle of legs, arms and wheelchair. I yelled for Polly.

It took much pulling and pushing and to be honest, a great many expletives on my part, before I regained a seated position, my composure and my dignity. By the time this had happened I loathed the chair with a passion I had previously reserved for the likes of Margaret Thatcher and people who let their dogs crap on the pavement. Needless to say I went back to using the Harrier and the Samba was taken away.

Fiona from the wheelchair service, however, is nothing if not persistent. Sometime later the Samba was back with a new armrest, designed to meet my exacting standards. Mind you, the tilt mechanism was still only working intermittently. Even so, I was persuaded to give the chair another go. So I set out in it to pick up the big boy from school, It is less than half a mile to the school but it was a pretty scary journey. Every time I there was slope, such as one caused by a tree root or a driveway, the chair would slew in the downhill direction. More than once I very nearly went over the curb which would have been catastrophic. I couldn't work out what was going on. I don't want to boast but I'm a blooming good wheelchair driver and I was sure it wasn't me. I made it back home with M, but as soon as I was it was back to the Harrier and bye bye to the Samba.

A few months later Fiona was back. This time she came with a man from the manufacturer. He watched me use the chair and sucked air through his teeth, The problem was, he said, that the seat was set too far forward; this meant that my weight was over the unpowered small front wheels. The chair was basically impossible to steer safely. It was also the reason that the tilt mechanism was so unreliable. He said he'd have a think. The chair was by now so familiar with the way out of the flat it could make it's own way back to the van.

I didn't see the Samba for quite some time. When Fiona rang last week to say she wanted to give it yet another go I was, I admit, a bit ungracious. Okay, but this is the last time, I growled. After all, if there was even the slightest chance it might work this time I owed it to everyone to give it a go. Not that I held out much hope.

That was last Thursday. I'm sat in it now. It arrived complete with an engineer who made some minor adjustments to the position of the controller. The tilt now tilts, the wheels now steer and I must say it's very nice. I can lie back in it which is exactly what I've been doing today, out in the garden, in the sun. Lovely.

Sunday, 4 May 2008

Where There's a Wheel There's a Way

For quite a while I've needed a new wheelchair. My trusty Harrier is rusty. I've had it for 10 years and I've just about worn it out. The frame is spotted with rust and the bearings make a slightly disturbing grinding noise. The arm rest is cracked, as is the head rest, and the seat is beginning to sag. More importantly, Fiona the very nice lady from the local wheelchair service, is concerned for my posture. Apparently I lean too much to one side and because I don't use footplates around the home I keep running over my own feet. So, I've been measured up and quizzed about my needs and expectations, I've been observed at home and outside, and I've shown her how I need to sit to work on the computer. This all started eighteen months ago.

The thing about a wheelchair is that it has to do everything. I have to be able to transfer in and out of it, I have to be able to eat at the table from it, work from it, brush my teeth from it, and watch TV from it. I also have to be able to get it in to our adapted van and safely lock it in position. It has to be able to get me to the local shops, park and library. The wheelchair has to be able to get me to the local primary school to pick up the boys, and be able to carry my 4 year old .home when he is too tired to walk after a hard days water play, colouring in and learning his shapes.

A wheelchair is a very personal thing. I'm in mine from the moment 1 get up until the moment I get back into bed. People say that a new wheelchair must be like getting a new car. It is, but it's also like getting a new pair of shoes, and an armchair, and a workstation, all at the same time. You have to get it right or your whole life is messed up.

The chair Fiona decided would be ideal for me was a (don't laugh) Samba Quickie. On paper it looked ideal; it was an indoor/outdoor chair and it had a tilting mechanism that would allow me to adjust position. Perfect. I was loaned the chair to try out for a few days and full of enthusiasm I transferred into it and set out to give it a proper test run. That is I would have done had I been able to transfer into it. The seat was all wrong. It was too rigid and I ended up balanced on it like one of those 1970s toys, a Weeble (Weeble`s wobble but they don't fall down)., only I did fall down. Or at least I would have done if Polly hadn't caught me. They took the chair away.

A month or so later it was back with a new padded leather seat. Great. Now at least I could sit in the thing. It was undoubtedly comfortable and I loved the tilting. I was left the chair and settled back to enjoy the mechanism. Except it wouldn't tilt. And then it did. And then it wouldn't. I was getting motion sickness and the chair hadn't gone anywhere yet.

I've got to go now, I've run out of time. I'll tell you the rest tomorrow.

Thursday, 1 May 2008

It's not Cricket

Today is Blogging Against Disablism Day. And since my spell checker doesn't even recognise the word disablism you can see what we're up against. The brief is:

On May 1st, bloggers shall write about their experiences, observations and thoughts about disability discrimination (disablism, sometimes ableism) and what we might do about it.

Okay. . .

Am I discriminated against on the grounds of my disability? Probably, yes. Is it blatant? In my experience, rarely. I could bang on about access to public transport and shops. (In fact I almost certainly will at some point in the future.) Equally, I could write for hours on the subject of education; but instead I think I'll recount a tale from my childhood.

The first time I can recall feeling that I was being treated differently from my peers was when I was 9 years old, and recently diagnosed with a condition that I could barely pronounce and with no idea how it would impact on my life. There had been a series of hospital appointments. tests and consultations. Consultations that took place in doctors offices while I sat outside. That was a few months ago, nowI was at Cub Scout camp and we were playing cricket. It was warm and sunny, and we'd spent the morning making toast racks out of twigs and had eaten a lunch of baked beans and dangerously undercooked sausages. The wickets were set and the teams picked. The opposition were put into bat. The game commenced and a tennis ball was slammed for six all over the field. I, like the rest of my team, waited in eager anticipation for my turn at bowling, confident that my unique spin technique would soon get a result. With the innate British sense of fair play and a complete disregard for ability everyone got a turn. Except me. An oversight no doubt. It was time for our team to bat and hopes were high. We had less than 900 runs to get and at least an hour until tea. One by one my team mates took their places at the wicket and the runs were piled on. I waited and waited, making sure I was in line of sight of Akela and Baloo. I saw them talk to each other and look my way. I was ready. I could visualise my sweeping shot, my cover drive and the jubilant appreciation of my team mates as as the last man in I batted us to victory. It didn't happen of course. Akela summoned another boy and put him in to bat to even up the numbers. Even nearly 40 years later I can remember the sense of injustice and devastation that I felt as I realised I'd been labelled the handicapped kid and that somehow different rules were applied to me.

Over the years I've experienced a few occasions when I've felt a similar sense of helpless frustration and impotence. I remember being denied access to a restaurant because the manager thought my wheelchair would take up too much space. I was once refused admittance to a cinema on the grounds of that old cliché 'being a fire hazard`. I've watched as bus drivers have stared fixedly ahead as they've thundered passed me at the bus stop. And I've sat in mortified embarrassment when at a Christian event the service has been interrupted so that some one can pray for my healing. But none of those incidents evoke the same rawness of the memory, and sense of foreboding.

So what was it about this incident that so marked me? Because it was the first? Well certainly that must be significant but is that the only reason? I've pondered the question on and off over the years and the only conclusion I have reached is that that was the first time I'd been embarrassed by something over which I had no control. I'd been embarrassed before, of course, but because of things I'd done or said, not by simply being me. And that I would contend is the real harm of disablism, or disability discrimination, not the denial of access or services, although that is bad enough, but the way it makes you feel. I felt bewildered and isolated, separated from the group I had thought I was a part of.

Well that's my contribution to the debate. Join me next time and I'll tell you how easy it is to get a new wheelchair. I'll give you a clue – not very.