Merry Christmas And The Most Dangerous Service Of The Year

It is Christmas eve and the big day hurtles towards us like a runaway snowball. I have two small boys who are wound up to fever pitch and vibrating with excitement. So much so, that if I could find a way to harness the energy they are emitting the world fuel crisis could be averted.

We've just come home from the most dangerous church service of the year, Christingle. For those of you not familiar with this peculiarly Anglican service, it's a children's carol service involving flaming oranges. Imagine 3 or 400 people, many of them children, holding oranges with lit candles stuck in the top, and waving them around whilst singing Away In A Manger. I make it my business to sit as near to a fire exit as possible. I'm pleased to announce that once again this year there was no fatal conflagration.

Matty and Sam took part in the nativity play as a king and a shepherd respectively. Sam ran down the aisle shouting “We're going to Bethlehem to see the bay-beee!” Very sweet.

Thank you for reading 'How To Be An Inspiration`. Assuming I survive the next few days I'll try and post again on or around New Years eve.

Merry Christmas to everyone reading this, what ever your faith or personal belief. Above all, let this be a time of peace for you. Even if you have children.

A Weird Day

I wasn't intending on posting today but Sam made me laugh.

With fairness in mind the boys alternate opening the Advent calendar. Obviously the aim is to be the one who opens the double sized window on Christmas eve. Sam was delighted, and not a little surprised, when Matty graciously said he could go first.

And so the pattern was established, Sam opening on the odd numbered days and Matty opening on the even. Sam takes his duty very seriously but sometimes loses track of who's turn it is. Which is why I was puzzled and then amused when he came bounding up to me today asking, “Daddy, is today a weird day?” He was disappointed when I told him it wasn't.

A Door In The Life

The two men stood in our living room and sucked air in through their teeth. One of them took out a tape measure and checked again. He shook his head and turned to me.

“Do you mind if I measure your chair?” he asked. One of the men was from a company that had tendered to replace our back door, the other was the council surveyor. “You are going to lose about 3 or 4cm because of the new door jamb. Is that a problem?” “Yes,” I replied firmly. “It is.”

Welcome to the long running saga of our back door. We live in a ground floor flat (apartment) with a small back garden (yard). Our back door opens onto a ridiculously long ramp that allows access to the garden or the back gate. Both the door and the gate are electronically operated by a remote controlled entry system which was initially installed when we first moved in some 9 years ago. The back door worked beautifully for a few months and then broke. People came out and sucked air through their teeth and determined it had broken because the wood of which the back door is made had swelled in the wet winter weather. This had caused the electric door opening motor to burn out as it tried unsuccessfully to open the stuck door. The motor was repaired. The motor burned out again.

For a long time nothing happened. The motor remained burned out. We were left with a back door that was harder to open than an ordinary one because it had a heavy door opening mechanism uselessly attached to it like a particularly uninspiring piece of installation art. Eventually we disconnected the mechanism and used the back door like any normal mortal would. This effectively meant that I could only use the door if someone opened it for me. Fortunately I had children.

Years went by. The original installer of the door opening mechanism went out of business. We had another door opener... er, child. Periodically some one would come out to suck more air through teeth and explain why their door opening mechanism wouldn't be suitable for opening our door. Then one day I realised something awful. Soon the 2nd baby door opener would be going to school full-time and not be available for egress facilitation. We redoubled our efforts and made a fuss until the man from the council found a company to install a non-biological door opener. For a while everything was fine. The door would open at the push of a button on a tiny remote control and I could come and go freely throughout the summer. But...

The wooden back door continued to swell in wet weather. The new, improved, non-humanoid door opening mechanism is beginning to feel the strain. The door is beginning to stick. The solution? A new door. Hence the presence of the two men in the living room this morning. The problem? The new door will be 3 to 4cm narrower than the old one because the door jamb will be larger.

3 to 4cm may not seem a lot but you can't make a wheelchair 'breathe in'. The man from the council has gone away to think. I'll let you know when he's thunk.

Oh, and just as he was leaving Polly pointed out that the electrically operated back gate is beginning to crack. The poor man winced. I think I saw a tear in his eye as he left counting the days to his retirement.

The Christmas Fairy Monologue

[BRENDA, A RATHER TIRED AND BATTERED FAIRY, IS BUSY MENDING HER BROKEN WAND. SHE IS HUMMING 'DING DONG MERRILY ON HIGH' CHEERFULLY WHILST TYING HERSELF UP IN STICKY TAPE.]

BRENDA:
La la la la la la, hosanna in the highest. There! [SHE HOLDS UP A RATHER WONKY WAND.] Now where's that tiara?

[SHE TRYS TO PUT DOWN THE WAND BUT IT IS STUCK TO HER HAND.]

Oh hello. No, don't mind me, I'm nearly done.

[SHE HOLDS UP A HAND MIRROR AND ADJUSTS THE TIARA.]

Does that look straight to you?

[SHE PICKS UP A CHRISTMAS CARD.]

Ah, look at this. A card from Cinderella. "Dear Brenda, Merry Christmas, love Cinders and Charming. XXX. PS. Please can you send me your recipe for Pumpkin pie."

What palaver hey? Every year it's the same. The sound of the last firework dies away and Asda is discounting mince pies on the telly. Wham, bam, thank you mam, it's the festive season. Mind you, you won't hear me complaining. It may only be seasonal work but being the fairy on top of the Christmas tree is a lot better than scraping a living collecting children's teeth from under pillows. People go round sticking Fluoride in toothpaste but they don't think of the consequences. There are those of us for whom bad teeth are a source of income.

Being the fairy on top of the Christmas tree is dead brill. For a start you get a good view of what's going on. And don't it go on.

First there's all that business with Father Christmas. What's that all about, hey? A fat bloke in a red suit squeezes his way down the chimney and leaves a load of stuff. The first time I saw him I thought he was a fly-tipper.

I had a peek one year. Do you know he arrives on a flying sleigh? It's only got one light and that's red. It's stuck on the nose of a reindeer. That can't be legal.

Oh and them poor elves he has. He never lets them have a swig of the sherry people leave out for him. Mind you, it's probably a good thing. They're vicious when they're drunk.

Do you like my wings? I'm not sure myself. I think they make my bum look big.

I want a figure like that fashion doll they gave the little girl here last year. Ooh she was lovely. She had long golden hair and fabulous clothes. She was 44-18-24. Look at me, 44-44-44. Well it comes from being made out of the inside of a toilet roll.

You wouldn't believe the turkey the family has bought. It's the size of a small caravan. They always buy too much. No one needs a hundred weight of Brussels Sprouts. Not even in Belgium.

That's the thing about Christmas. Everyone does things to excess. Have you seen outside? They've put up some outdoor decorations. There are so many lights out there a jumbo jet landed on the garage roof.

And what about this tree I'm supposed to sit on. It's huge. There's still a family of squirrels hibernating in the trunk. It's got so many baubles hanging off it it looks like a pawnbrokers convention. And it's got those fairy lights that flash and play music. It's going to be like sitting on top of a high pitched discotheque.

Still, I shouldn't complain. It's that lot in the corner I feel sorry for. Apparently it's called a crib scene. Now I have to be honest, for quite a while I didn't realise that it had anything to do with Christmas. But I've been talking to one of the camels and he explained it all to me.

It seems there's a baby over there. It's in a manger. Apparently it's his birthday. The poor thing, fancy being born at Christmas when there's so much going on.

Anyway, according to the camel, Mum and Dad couldn't find anywhere to stop and have the baby. They obviously hadn't booked in advance which is what you should do in the holiday season. And so they ended up in a stable. It's very picturesque, just not very hygienic.

So then, the baby is born and next thing they know all these people start appearing. There's a whole load of shepherds complete with sheep. There's a donkey and then three kings turned up on camels bearing gifts. The kings not the camels. Gold, frankincense and fur. It should be myrrh but that broke off a few years back and when they tried to glue it back on - the cat got in the way. On top of all this there are several angels and a whopping great big star made out of bottle tops.

I feel sorry the child, I really do. He's dragged out every Christmas and made a fuss of. Then before you know it he's back in a box and shoved up out of the way in the attic. You never have a chance to get to know him. It's a pity because I get the feeling there's a whole lot more to him than a guest slot in the school nativity and a chorus of 'Away in a Manger'.

Right, it's time to climb the tree. I hope they've got one of those non-drop ones. Those pine needles get everywhere.


 Stephen Deal, 1998

The Language Of Disability

If the title of this post has led you to expect a deconstruction of the social model of disability or an analysis of inclusive versus exclusive constructs of language then I'm sorry to have misled you. This post is about something far less esoteric, it is about the look of incomprehension on the faces of people I speak to. In short, this is just another Deal rant.

I would consider myself to be reasonably adept at expressing my thoughts. I can, if required, turn a phrase. Indeed people have, over the years, actually paid me to do so. I have written for television, had books published, shows performed in front of audiences of thousands and have given countless seminars and workshops. I could go on and mention the few times I have actually appeared on television and had my opinion sought, or the radio programmes in which I have featured or the occasions I have addressed auditoriums packed to their 3500 seat capacity. I would mention these things not to boast but to reinforce the fact that I am not some mono-syllabic, tongue-tied person unable to communicate and string sentences together.

I am the first to admit that when I am ill with a chest infection my diction is affected due to the emphasis of words being altered to match my breathing. But even so, I have occasionally led workshops whilst unknowingly suffering with double pneumonia. I also know that first thing in the morning, after a night on the ventilator, my voice is croaky. But a few sips of water or, better yet, coffee soon sorts that out. When I am particularly tired I know my voice slurs a little and becomes unclear, and I know that in a noisy environment I find it difficult to project my voice with sufficient volume to overcome the surrounding distractions. I know that the muscles in my face, particularly around the mouth are affected and means that it is difficult for people to take cues from the way my mouth shape the words, as we all unconsciously do. All this I know.

But, for the love of God, I do not understand the look of blank incomprehension I get whenever I open my mouth to speak to a stranger. I know that on the telephone, especially when talking to some call centre located in India, accents combined with the Dystrophy can make things complicated, so I go to some lengths to avoid such conversations. But in the real world, face to face, I do not believe I am completely unintelligible. And yet, time and time again, be it in shops or at home with new carers, with tradesmen or with Jehovah's Witnesses at the front door, I am continually met with looks of befuddled bewilderment and the aforementioned incomprehension. Okay, if the fate of the world rested with their crystal clear understanding of every word I utter, then a request for clarification is understandable.

“Did you say cut the blue wire or the red wire to defuse this 1000 mega-tonne nuclear device ticking down from 60 seconds and located in a densely populated city?” In such circumstances I would understand that you would want to be certain you had caught my meaning and not take a wild guess, but if I am waiting at a till, clutching a packet of biscuits and waving a debit card, which is more likely; that I am asking your opinion of the economic downturn or that I am asking for the price of the packet of Chocolate Digestives? Looking at your colleague and mouthing “What did he say?” does not help the situation. Equally, if you are helping me to sit up in bed and I ask you to let go of me, it is because I need to find my own point of balance, you calling for Polly to come and translate for you not only slows things down, it means you are not considering the context of the mysterious sounds I am uttering. “For God's sake, LET GO! You are going to KILL ME” as the weight of your arm pushes me over the side of the bed.

The fact of the matter, as I see it, is that some people see the disability and expect not to understand me. The more disabled I look, the less effort they put into trying. Wait a minute I hear you say. Perhaps you are deluding yourself, Stephen. Perhaps you are an incomprehensibly mumbling, speech slurring simpleton. But just moments ago the doorbell went and the groceries were delivered by a Spanish driver who seemed to understand me perfectly well and put the delivery exactly where I specified without any problem at all. And yet, when a parcel came yesterday, the delivery man, who appeared English, couldn't understand me at all when I said that yes, I would sign his delivery note. After asking me several times and me replying “Yes I can” in as many ways as I could manage, he gave up and said he'd sign it himself. It was almost as if he didn't expect to understand me, so he couldn't.

So at the risk of being misunderstood - I'll write slowly and clearly – Thank you for reading. Or as some people out there will hear – My fish pushes wheelbarrows.

They Came From The Sky

“There are some men here,” said Godfrey, my carer, shaking me awake. “They come from Sky.” At last! I thought. Aliens. I always knew Erich von Daniken wasn't completely bonkers. “They have come to install cable.” It was 8.45 this morning. Not exactly the crack of dawn I know, but I was still half asleep. “Shall I let them in?” Godfrey was looming over me. Aliens wanted to install cable in my home. They come from outer-space and they come with power tools. Hang on..,

A few weeks ago I had made a terrible mistake and endangered my marriage by allowing a TV aerial socket to be installed in completely the wrong place. (See The Wrong Thing.) Now the contractors were back to make good my calamitous error by moving the socket to a Polly approved location and installing another in the bedroom. Godfrey continued to stand patiently awaiting instructions. I dimly recalled Polly saying they were coming today, but she would never have arranged for them to come before 10.30am, because she knows that it can take until then for the carers to prise me from my bed, get me up, washed and dressed and infuse me with jet black coffee. I blinked at Godfrey a couple of times and tried to speak. All that came out was a croak. My mouth in the morning, after a night on the ventilator, is drier than a camels sense of humour. Godfrey gave up. “I will tell them they have to wait.”

Some 20 minutes later, as Godfrey and Abby eased a jumper over my head, I asked where the contractors were. The flat was eerily silent: “They wait,” said Godfrey. Abby nodded in confirmation. I wheeled down the hallway and into the living room. It was empty. I glanced through the window. There, in the garden, stood three men, huddled together in the drizzle. The electrically operated gate had swung closed, trapping them like exotic zoo specimens in an outdoor enclosure. They watched morosely, through the window as Abby struggled to fit the footplates on to the wheelchair and Godfrey brought in a large mug of steaming coffee and placed it carefully on the table. Satisfied that all was ready he went to the door, unlocked it and opened it. “You may come in now,” he said to the three shivering workmen, loaded down with drills and co-axil cable, and who were, inevitably Polish, with barely enough English between them to ask if you needed a conservatory built. They glowered at Godfrey who smiled benignly back at them. “He is ready now. You may start.”

I haven't been able to check the socket in the bedroom yet. I won't be surprised if it only receives Polish reality TV documentaries about paint drying.

Bring On The Girls

By early 1981 I was signed off work at the Civil Service, in a fair degree of pain as the muscles in my back wasted, unable to walk more than 50 metres at a time, and lacking any direction in life. But on the plus side I could drive. It was the single greatest pleasure of my life. I would go for long drives simply because I could. I enjoyed a sense freedom that I could not achieve in any other way.

Aside from the previously mentioned friends, Paul, Jay and Darren, I was also spending time with others; those ineffably mysterious, bewildering and contradictory creatures, girls. From the safety of a quarter of a century, a happy marriage and two children later I look back on what was at times a confusing experience with a wry smile, and in case any are reading this, a definite fondness. Having always gone to co-ed schools girls had always been part of my life, albeit a particularly mystifying part. As far as the girls at school were concerned there may as well have been a perspex wall between me and them, such was their unattainability. Fortunately the church youth group provided at least the theoretical possibility of social contact. My first girlfriend, when I was 13, was a girl from an associated youth group from the other side of the city called Jackie. Jackie was small, blonde and disturbingly curvaceous. We would meet in town and hold hands while wandering around the shops. I bought her a necklace for her 14th birthday. The relationship lasted a little over 5 weeks during which time we grew apart. Had I known the dearth of relationships I was about to enter into I may well have made more of an effort, but truthfully she scared me.

Years later my ability to drive and the fact I had my own car increased the opportunities I had to interact with the female of the species. Unfortunately it coincided with the significant deterioration in the MD which undermined any burgeoning self-confidence I might have felt. The growing obviousness of my disability and the almost palpable sense of desperation I must have exuded limited my potential as boyfriend material and I entered in to a series of 'nearly' relationships.

In amongst all this hormonal mayhem I did strike it lucky, if not romantically, with a couple of girls who have since gone on to become life long friends. During my time off work from the Civil Service I would often meet up for lunch with a girl who had been at both my school and my church. Michelle was a lot of fun to be with during a difficult time while I struggled to find some direction for my life. It was nice to have an attractive friend to just hang out with (as opposed to my not so attractive male friends) and I both appreciated and enjoyed her company. And, on the off chance you are reading this Michelle, it's your turn to write.

(And yes, Jacq, you were the other one.)

Pleasant though spending time with friends was, and despite the uncertainties pertaining to my physical condition in the future, I knew I had to move on. It was time to go back to education. I applied to Southlands College, part of the Roehampton Institute, which at the time had its degrees validated by the University of London and was set along side the common in Wimbledon, to read for a combined studies Bachelors Degree in Psychology and Religious Studies. It was a decision that transformed my life and took me in a whole new direction.

Dear Mary - A Christmas Letter

Dear Mary,

Oh my poor, poor girl. A stable! I’m so sorry. It sounds like a nightmare. I just thank God that the baby is okay. Jesus is a lovely name but what happened to calling him Immanuel?

I’m not sure that it’s right that you should be entertaining guests so soon. Did you make sure those shepherds washed? I read somewhere that sheep carry all sorts of diseases. As for Gold, Frankincense and Myrrh - What kind of gifts are they for a newborn? And they call themselves wise. Men! Where is Orient R anyway?

Regarding the problem with the bright star all I can suggest is that you make sure the shutters are firmly closed at night. You must make sure you get a few good nights sleep.

I can’t wait to see the baby. A newborn always give hope for the future.

Write soon dear and give my love to Joe.

Love,

Mum

PS. Did you get the swaddling cloth I sent? I’m knitting you a shawl. It’s blue.

A Civil Servant

I joined the civil service in late October 1979. After the Youth Opportunity Programme sponsored make work employment at the Fire Brigade this was my first proper job. I entered on the lowest rung of the ladder as a Clerical Assistant, there were cleaners with more authority than me in the South West Regional Office of the Manpower Services Commission. I spent my days writing out Giro cheques for, ironically, people on YOP schemes all over the west country. It was an open plan office, where we sat in little clusters of desks, wreathed in cigarette smoke, and overseen by a young man called Brian.

Brian's real interest in life was women's hockey, which tells you everything you need to know about him. He passed the time between matches by micro-managing every aspect of Giro writing, and particularly mine, with the kind of anal-retentiveness that makes for a good junior civil servant and, presumably, a great women's hockey coach.

My colleagues were a nice enough bunch of mostly middle-aged women who chain-smoked through out the day and seemed to talk about nothing other than various operations they had had, and a number of younger women with unfathomably complicated love lives. Towards the end of each day we would stuff the Giro cheques into envelopes, ensuring that the hand written addresses were visible in the little transparent windows, and stick a postage stamp on it. (In the top right corner. You see, I hadn't forgotten my life skills training from earlier in the summer. (See In The Summer Of '79)). After several months of this daily routine we received a franking machine which did away with the need to lick stamps.

Being the most junior of junior civil servants meant I was not required to think. So to compensate I wrote scurrilous articles for a very unofficial office newsletter which was pinned to the notice board secretly during lunch breaks. But the best thing about the job was that it made absolutely no demands on my spare time. This was good because I was happily involved with helping to run the youth group at the church, and since learning to drive was in a position to mcct up with friends like Darren, who at the time was, for some reason, living in Cheddar (where the cheese comes from), and Jay who had dropped out of University and was kicking around like me.

For a while Jay and I shared a house that was so cold that the only way to stop the milk from freezing was to put it in the fridge. As a result we would often eat out, visiting a series of restaurants on a regular basis. Paul joined us for a few weeks but sensibly decided it was too cold and went back to the warmth of his parent's house. Eventually our landlord sold the house and I went back to live at home. Jay moved into the first of a series of bcdsits where I would visit him and from which we would continue visiting restaurants on rotation. All the while I was finding walking more difficult and was in near constant pain as the muscles in my back weakened. My car, a white Mini, was the saving grace, giving me freedom to move around the city, freeing me from walking distances and waiting for busses.

The highlight of each working day came when I got to sit at the newly acquired franking machine and, while feeding envelopes through one at a time, got to enjoy the panoramic view of Bristol from the 5th floor office window. I would watch seagulls wheeling beneath me and the comings and goings of the busy city centre. It was my 20 minutes of mindless relief from the hand-cramping Giro writing. But then, one day Brian looked in the staff manual and realised that a lowly Clerical Assistant was too junior a creature to operate such important equipment. I was relegated back to sealing envelopes. Enough was enough. I determined to make my escape. But escape to where?

Then, one day in early 1981, I found I could barely walk from my car to the office anymore. My back was in excruciating pain. A doctor signed me off work and warned me it would never get better. I quit the Civil Service and swore never, ever to work in an office again.

Escape To The North Pole

Yesterday, Polly and I picked the boys up from school and we all headed to the North Pole. The North Pole had temporarily relocated to a garden centre a few miles away, although Sam maintained with absolute certainty that it was usually located west of Africa. Matty was less than enthusiastic about the adventure, maintaining that both the North Pole and garden centres were boring.

Matty's attitude changed markedly when he saw that we were following signs to Santa's Grotto. At 8, Matty is beginning to harbour uncertainty about the whole Father Christmas mythology, but faced with the prospect of a face to face encounter decided to hedge his bets and repent his doubts and embrace the fable. An elf at a cash register welcomed us and invited the children to meet Santa. As we entered the grotto a sign read '2 hours queuing time from this point' and a winding path led off to the left. Fortunately our quick escape from school meant we were ahead of the crowds and the grotto was, for the most part empty. We wound our way along the path, pausing to admire animatronic elves preparing for Christmas, making and wrapping presents with mechanical efficiency while others played seasonal musak and loaded a sleigh. All good fun but I confess to being relieved we weren't enjoying them for 2 hours.


Eventually we reached a sign declaring '10 minutes queuing time from here` and joined the line of excited children. Every few minutes an elf, slightly self conscious in his green elven attire, would open a door and beckon the next group into Santa's living room. Some long 10 minutes later it was our turn.



A suitably convincing Father Christmas, resplendently bearded, greeted the boys and determined if they'd been naughty or good. Assured of their saintliness he enquired after their
preferences regarding presents but was thankfully vague about the likelihood of them receiving anything specific. He posed with the boys for a couple of photographs and finally, prompted by the elf, doled out presents, before the busy elf ushered us out from the North Pole and back into the garden centre.


After a much needed cup of coffee, during which the boys unwrapped their gifts and discovered that they both had age appropriate construction sets, we followed signs to Santa's Reindeer. The reindeer were in a high security enclosure, having last year made a bid for freedom, escaping to be found grazing on a round-about a mile or so away on Christmas day. This lot were going nowhere. I was surprised not to see gun turrets. After a few minutes of watching them eat carrots and forge identity documents we headed for home, humming the theme tune to The Great Escape.

The Fabulous Adventures Of Wheelchair Man

Sometimes you paint yourself into a corner. I, like countless other parents around the globe, tell my children bedtime stories. And when I can't stand another Horrid Henry or Captain Underpants story I make one up with the help of Matty and Sam. By far and away the favourite of these made up bedtime stories are The Fabulous Adventures of Wheelchair Man, in which the eponymous hero and his two sidekicks, Speedster Sam and Destroyer, save the world and, not infrequently, the entire solar system. Wheelchair Man is a mild mannered father of two with a wheelchair that, at the press of a button, transforms into a flying, laser shooting Superchair. The boys, who chose their own hero names and powers, super speed and super strength respectively, assist their father in his missions to save the world and demand disabled access to the Fortress of Evil. All the adventures, alien invasion not withstanding, have to be fitted in around school and homework, or, as in the case of the current adventure, during school holidays, because saving the world is all well and good but if you can't read and write how will you be able to understand the instruction manual of a top secret space ship?

The stories have a somewhat eccentric narrative because both Matty and Sam like to fully participate in the telling, so anything from monkeys to red-armoured scorpion robots have to be incorporated. Matty, who has improvisational skills to dazzle Robin Williams, likes epic adventures with lots of battles and cliffhangers. Sam is currently most concerned with finding the exact right word to initiate the transformation from school boy to superhero. “Transformulation!” seems to do the trick at the moment. However, since each metamorphosis requires getting out of bed and spinning around whilst shouting the trigger word, we tend to limit the number of times school boy Sam is required to become Speedster Sam each episode.

Currently, the super team are on a remote tropical island helping a team of scientists to install 'the tower of electricity', which will help solve the worlds energy problems. They've already battled pirates and now, whilst exploring the island and rescuing a trapped monkey, have been caught in a deadly trap themselves. With Destroyer down a spike filled pit, Speedster Sam entangled in a net hanging from a tree, and Wheelchair Man faced with a ramp steeper than 1:12 (and a huge number of guns), can they escape? If yes, then how? Let me know, there are only a couple of hours until bedtime!

In The Summer Of '79

I left school in the summer of 1979, at the dawn of the Thatcherite era and the end of disco. I had not applied to any colleges and I had no idea what I was going to do with the rest of my life. My parents were in the process of moving house and everything felt very up in the air. My friends were moving on with their lives; Paul to be a rock star, gigging all over the country and Europe; Darren, to manage a shoe shop in Weston-Super-Mare; and Jay to study Astrophysics at University College London. For want of anything else to do I joined a government Youth Opportunities Programme.

The YOP was one of an endless series of schemes to shoehorn young people in to the workforce. Spiralling unemployment meant that young people with few or no qualifications were finding getting work difficult and so were sent on courses to learn skills. I found myself in a group of 30 or so, mostly young men,, learning how to write job application letters and where to stick the stamp on the envelope. Even with my pitiful handful of A level results I was massively over qualified for the course. I once spent a whole afternoon learning how to give imaginary change to imaginary shoppers for imaginary goods. I would have happily endured this less than mentally challenging employment substitute indefinitely, mastering such skills as shoe lace tying and bottom wiping one after another until I was as full of life skills is it was possible to be. However, the course was held in a converted Georgian house in a road off Park Street, the steepest shopping street in Bristol, a half mile walk uphill from the bus stop. However tempting it was to learn how to open a tin or polish your shoes, the walk was too much. It was time to move on.

I was placed, courtesy of the YOP, in the administration department of the local fire brigade, where it was my highly supervised job to procure provisions and equipment for our fire fighting heroes. My first job was to locate and purchase a stool for the brigade drummer to sit upon. It is responsibility like this that builds a man. This was my first experience working in an office. There were five, including me, in the procurement department, a microcosm of offices everywhere. One man stood out, and even to this day remains the rudest man I have ever known.

George was in his mid 50s, balding, with a comb-over. He wore a brown jacket, usually with a yellow shirt straining to close across an ample belly. His nose and cheeks were a fine network of red, broken capillaries, and tufts of grey hair sprouted from his ears.. In his desk draw he kept a flat bottle of Bell's whisky from which he took surreptitious slurps through out the day, winking at me and saying it was his medicine. Most mornings, but especially on a Monday, he would crash into the office, some ten to fifteen minutes late, plonk himself at his desk, and ask each of us in turn how much sex we'd had over weekend, and in what positions. Maureen, to my left, a married woman in her 40s would sniff and tell him to mind his own business. Colin, who I would guess to have been in this early 30s would make up a ridiculous figure and go back to reading the Sun, while Barry, who was supposed to be in charge, but was a good 20 years younger than George, would flush crimson and asked George if he had completed the Leyland order in an attempt to change the subject. George ignored him. He would lean across his desk, directly opposite mine and ask me if I'd 'got any' over the weekend. He seemed convinced that as a teenager I must be promiscuous and wanted every detail. Disappointed with my mumbled and evasive answers he would regale us with his own exploits in various clubs through out the city and tell racist jokes.

When ever I hear people moaning about how PC everything is these days I think or the odious George. And even though I was barely 18 at the time I still feel ashamed that I didn't stand up against him. Even in 1979 he was a dinosaur and I can't believe he was tolerated, let alone excused because he was 'only joking'.

I was only with the fire brigade for about 4 months before moving to the civil service, ironically to work in the department that paid young people on YOP schemes.

Wall-E Wants A Cracker

I would like to tell you about my time in the Civil Service. A tale of cigarette smoke and seagulls. But at this moment I am distracted by a pain in my right foot and I can't concentrate on anything else. My foot naturally would turn inwards on it's side. There is a point about the size of a penny where all the weight comes to rest. If I try to place the foot in such a way as to relieve the pressure then this stresses muscles further up the leg. It is coming to the point where I am considering judicious use of a chainsaw to remove the offending appendage.

On Saturday it was my friend Stuart's 35^th birthday. To celebrate, some 40 or so of his friends and their families, including us, descended on Wing Yip, a centre of all things Chinese for a buffet style meal. The food was fantastic and it was lovely to see everyone, but I think I must be getting old (well much older than Stuart) because the heat and noise of so many people (for people, read children) in such a confined space made me feel positively claustrophobic. Would it really be too much to expect to enjoy satay chicken on a stick and some Hong Kong style noodles without a plastic model of Wall-E landing amid the prawn crackers in front of you? Perhaps it was all a dastardly ploy to get me to experiment with Chinese herbal remedies for migraines. Or perhaps my foot is making me grumpy. Any way, happy birthday Stuart. Just think, by the time you are my age all those kids will have grown up and left home. There's a thought.

Brothers And Sister

Facioscapulohumeral muscular dystrophy (FSH) is a condition that affects both men and women equally. The chances of inheriting it from an affected parent is a straight 50/50. I know this from reading the literature and from personal experience. My father had the condition (misdiagnosed as Polio as a child) and of his 4 children, 2 of us inherited it. (See post Up Up And Away for more about FSH and inheritance.) There's me, Stephen, the oldest, with the condition. Then my brother, Simon, with out the condition. Next comes Mark, with FSH, followed by little sister, Helena, without it. Gregor Mendel would have been thrilled.

Growing up in a family where fully half the members are disabled seemed, at the time, perfectly normal. You can hardly play the 'I'm disabled, pity me' card if 50% of the family are in the same boat. We were all expected to behave as well as each other and there was no sense of favouritism or lowering of expectations. As I've grown older I've come to appreciate just how stable my family was. I have no wish to idealise the situation but if you had to grow up with a disability then ours was the family to do it in. At some point I know I'll write about my mother and father but just for now, let's concentrate on my siblings.

I am inordinately proud of my brothers and sister. They endured the same uninspiring education as I did and have each gone on to be very successful in their fields. Hartcliffe Comprehensive school in the 1970s was not renown as a beacon of academic excellence. I know for a fact that at least until recently we were the only family of four children who attended the school to all have graduated university, let alone with a total of 2 Doctorates, a Masters degree and a lowly Bachelors degree (mine). Proud? You bet I am.

Simon (PhD in Computing) is a something complicated to do with computers that involves him flying all over the world, He is married to the lovely Jaspreet, and has two sons. Mark (PhD in Disability) has carved out a niche in the disability employment sector. He serves on DEAC (Disability Employment Advisory Committee) for the government. He also travels all over to lecture. My baby sister, Helena (MA in Personnel Management) is head of Human Resources in Asia for an oil company (Hess). She lives in Kuala Lumpur with her husband, Andrew and their two sons. Not bad for a group of kids from Hartcliffe.

I'm sure that we each have different memories and perspectives of growing up with Muscular Dystrophy, how it affected and shaped us as a family. There were fund-raising days, the occasional sadness of a friend or acquaintance passing away, and the annual MD Christmas parties

Ah, the Muscular Dystrophy Christmas party. An annual get together held in a prefabricated hall where we sat at trestle tables and ate party food, played bingo and watched, joy of joys, Woody Woodpecker cartoons. Someone would sing Tom Jones songs and eventually, just as the tension became unbearable, the sound of jingle bells would be heard and a gruffly west country “ho ho ho” heralded the arrival of no less a personage than Father Christmas.

This is where my memories and those of my brother Simon's differ. As Father Christmas doled out presents we waited in breathless anticipation as names were called out. He maintains that Mark and I were given colour televisions while he got a balloon. The truth, I seem to remember, is that I always seemed to get a Soccer album, Score 1973 or something, while Simon got a toy of some kind. (Mark and I only ever got one television and that was from the Young Farmers. It was very embarrassing.)

If for some reason you would like to read a little more about my teenage years, then have a look at Rock God's post My Tone Deaf Mate Won TWO Ivor Novella Awards. Some of the story is actually true.

That Healing Touch

If school days are meant to be the happiest of your life then my life was going to be pretty miserable. Don't think for a minute that it was all terrible; for the most part it was just monumentally forgettable. Fortunately school was not the only thing going on in my life. My friend Paul (Rock God) was known universally as 'The Preacher's kid' on account of his father's occupation. Paul took the name to be derogatory but in actual fact it was merely observational. His father, Graham Loader was, and is, a widely respected west country evangelist, who would on occasion take the school assembly and was generally accepted to be infinitely preferable to the usual bland, platitudinous rubbish we were normally fobbed off with.

Graham Loader was at that time a leader of a little chapel set in the dark heart of the Hartcliffe housing estate and he, with others, organised for a youth organisation called the Covenanter's to use the school gym on a Friday evening. Paul dragged me a long. In a Health and Safety nightmare we cavorted on gym equipment and trampolines, played bone-jarring British Bulldog and clambered up and dangled from wall-mounted climbing bars. We were 13 and indestructible. The only condition on partaking of this Friday night mayhem was attendance at a bible study type thing on a Sunday morning at the Hartcliffe Christian Fellowship. Fair enough, there was nothing on the telly.

Through out my teenage years I became immersed in the life of that little fellowship. And while, looking back, I might now take issue with elements of the somewhat black and white theology, it in many ways shaped the person I became. I remember it with great fondness. It gave me my first taste of public speaking, it gave me responsibilities, friends, and ultimately the basis of a career.

HCF was a world away from school. Different friends and different problems. My disability was still an issue though. I had to reconcile the reality of Muscular Dystrophy with never ending tales of healing, where faith led to a physical cure and that no sickness, disability or condition was too great for God to deal with. As the muscle in my forearm weakened and the tendons tightened causing my right hand to claw, I would lie awake at night praying that my fingers would unfurl. When they didn't it was obvious I didn't believe hard enough, or pray the right way. It is to their credit that no one at the church took me aside to discuss my lack of faith, although it must have been tempting for them to speculate on the massive nature of my sin that so caused God to hold back his healing touch. They needn't have bothered. Though I tried to lead the perfect life, pure and holy, I was after all a hormonally normal teenage boy. Just sitting next to Julie Trick in an English lesson was reason enough to require hours of repentance.

The search for healing would be a recurrent theme through out my teens and early twenties and would lead to my somewhat ambiguous relationship with the Almighty. But I can tell you that the kindness, wisdom and friendship of people like Graham Loader helped make what could have been traumatic years easier in many ways. The Preacher's Kid should be proud.

I feel Fine(ish)

Throughout my teens my disability was more an annoyance than a source of pain. It slowed me down rather than stopping me doing things. There were many occasions when it inconvenienced me or caused me some level of distress but largely it was something to be worked around rather than an immovable barrier to getting on with life.

Muscular Dystrophy does not in itself hurt. The gradual break down of the muscles is painless but as the muscles weaken the remaining ones are forced to compensate and that can hurt. I say this with some feeling as I have recently pulled the muscles around my left shoulder whilst performing that inherently dangerous procedure, flushing the lavatory, and the excruciating pain is beginning to impact on my usually sunny nature. But back in my teens pain was not the issue, fatigue was.

I went to a school on the edge of Bristol, Hartcliffe Comprehensive, half a mile from my home. In 1972, when I arrived, aged 11, Hartcliffe was reckoned to be the 3^rd or 4^th largest school in the country with more than 2,400 pupils. The school consisted of two huge buildings, a quarter of a mile apart on a 5 acre site. The two buildings were labelled with staggering imagination East and West. It was perfectly possible to have a French lesson on G floor, the top of the East building, follow by an English lesson on C floor, the top of the West building. A generous 5 minutes was allowed for transition between lessons. You can imagine the scene as the first bell rang and nearly two and a half thousand pupils raced to their next classroom. You can also imagine some vindictive teachers over running their lesson whilst others demanded to start theirs bang on time. To avoid total chaos one-way systems were introduced meaning that sometimes you couldn't even take the shortest route. The process was repeated up to 5 times a day.

There are many tales I can (and no doubt will) tell about my school days but here I am writing about how it felt to have MD in such a situation. Over the 7 years of my secondary education my condition deteriorated relatively little compared to what was to come later. During the early years I could still run (albeit slowly) and had to partake in PE lessons, including Rugby. I felt very self-conscious, aware of my puny physique, and went to some lengths to avoid communal showers. A good game of rugby for me was one from which I left the field completely mud free (difficult in an English winter) and without having broken sweat (easy in an English winter). I felt different but I didn't feel excluded. I had good friends.

I wasn't particularly bullied at school. This was for a number of reasons, not least the aforementioned friends. One of our group was a fellow called 'Birdy', who came from a huge and somewhat notorious clan. Upsetting Birdy by bullying his friends could prove catastrophic to a would-be thug. Think Nelson Mudd with a west-country accent, more charm and about 10. . . er. . . 'free-spirited` brothers. I also cultivated an air of mediocrity. Standing out in such an environment was rarely a good idea and I was already different enough. Over the years I developed a distinctive leg flicking gait and an inward curvature of the spine. As my facial muscles weakened my face became less expressive, which many teachers took to be a blankness and lack of comprehension, and I used this to fade into the background. I very much doubt that any of my teachers remembered me two years after I left the school.

By the time 1 reached the 6^th form walking to and from school was an exhausting challenge each day. Getting an education was a fairly low priority by that time. I remember having a crisis of confidence; wondering what I was going to do next; what, literally, was going to become of me. I put off applying to Universities and half-heartedly looked for a job. I could feel myself at a tipping point. Up until now my life had had an approximation of normality. I was different, but not markedly so. I knew things were going to change, and not for the better. The reality check came when I applied for the Disabled Living Allowance (or whatever it was called back then) mobility constituent. I'd previously been turned down but now a panel of doctors labelled officially 'disabled'. They also provided a written assessment. I was barely 18 and was told I'd be in a wheelchair before I was 25. They were out by at least 2 years. I was left wondering whether life was worth bothering with.

Next time – Finding a direction.

How Does It Feel?

Imagine having a severe disability, severe enough to require a wheelchair, and yet not be able to tell anyone what it feels like because of another unrelated disability. This is the scenario presented to me by fellow blogger One Sick Mother, whose friends son suffers from both Muscular Dystrophy and Autism. OSM wrote -

Stephen,

The main reason I follow your blog - apart from the quality of the writing - is because a real-life friend of mine has a 13yo son with Autism and MD (I don't know which type). His name is *****

Recently, my friend complained that there is little information out there that she could find on MD (lots of stuff on Autism). Yes she can find the medical information and the all the impartial technical stuff. But how does MD *feel*? She doesn't know that and ***** cannot really tell her. He can talk, but like many Auties, he cannot express his feelings properly. She doesn't know if he is hurting or just tired.

So I was wondering if you would be able to point us to some ... inside information on MD, which may help prepare C to prepare *****?

It's just a thought. Thanks in advance for any help you can offer.

One Sick Mother

I replied -

Hi OSM

I hope you are feeling better. (see I read your blog too).

Eek! Autism and MD. That's a combination I've never come across before. The British Muscular Dystrophy Campaign site is pretty good. I'm pressing for a blog section so people can share their personal experience.

Would you mind if I address the questions you raise on my blog? Can I quote your message or would you rather I not mention your friend directly?

Remember that MD is an umbrella term for a huge range of conditions. My experience may be completely different to *****'s.

Let me know what you think.

Look after yourself,

Stephen

OSM replied -

Thanks for the prompt reply.

I am feeling a good deal better thanks. Funny how a cold can knock the stuffing out of a person who performs their own chiropractic adjustments. I suppose it is all relative.

I know Autism and MD is quite a combination. Actually it was because of the Autism that they found the MD pretty early. They were going to one of these cure-Autism-or-go-broke-trying-with-the-cunning-use-of-quackery doctors when blood tests showed some abnormalities.

Considering all they deal with, they are doing well. They just got *****'s first wheelchair, which I know was a blow for them. I will point her to that site. Like many Americans she does not tend to look outside the States much for stuff.

Yes I understand that there is a vast range under the term MD. Kind of like Autism or PDD, I expect, which covers everything from Rainman to Einstein. I will be seeing C in a week or so and I can ask more specific questions then about types and subtypes etc.

I don't mind you addressing the question directly, I think it is relevant to a lot more than just this case, just please don't mention ****'s name.

Thanks again,

OSM

I share this exchange of emails by way of explanation for the next post wherein I will discuss what it feels like to have MD.

On another issue altogether...

Polly was walking the boys to school the other day and Sam was moaning, “Why do we have to walk?” Polly gave her stock reply. “We're saving the Polar Bears' houses from melting.” Matty, whose class last week had had a visit from a meteorologist joined in to explain. “Cars create gasses that cause climate change and that's melting the snow around the North Pole where Polar Bears live.” Polly was pleased that he had taken the lesson on board. “The world would be so much better without cars,” Matty continued. Then added thoughtfully, “or greenhouses”.

The wheelchair V The Walker

On the post Grit In The Shoe Of Life I listed three of the petty annoyances of my disability. Here is another one, let's call it The Walking Wanderers.

Imagine the scene; you are wheeling along the High Street pavement, thirty feet ahead of you are an elderly couple, laden with Christmas shopping, walking up towards Woolworths and a whole bundle of 3 for 2 offers. They walk slowly and you in the wheelchair are closing fast since the chair moves at the equivalent of a brisk walking pace. You line up to overtake on the inside, next to Superdrug, when with feet to go, and for no apparent reason, the elderly couple stop dead. You come to a juddering halt yourself and miss smashing in to their brittle boned back of the legs with less than a foot to spare. You release a breath in a hiss of relief and prepare to negotiate around the now stationary obstacles. But then, one of the couple (usually the man for some reason), without looking, takes a step backwards and onto your metal foot-plates. He stumbles, partially falling into your lap, and glares at you, assuming you have run into him. Once disentangled he limps away on the arm of his spouse muttering about not letting 'them' out unaccompanied.

Some time later, with rolls of wrapping paper strapped to the back of the wheelchair and a box containing special offer bubble bath on your lap, you are heading back down the High Street towards Marks and Spencer's to buy a woolly hat when the same elderly couple step out of WH Smith's directly into your path. You just manage to swerve around them, nearly taking out a woman and her baby-buggy, and head off away from the couple, hearing her saying to her husband something about 'liabilities'.

The final encounter comes as you head back towards the car-park. You spot the by now familiar anorak and beige mac a little further down the street, and mindful of their erratic wanderings you slow to match their speed. But their pace grows ever slower as they discuss the merits of Vicks Synex spray over menthol lozenges, and eventually, as you realise that Christmas will be long over before you reach the car at this ever creeping pace you determine to overtake them, albeit at a wide margin. It is at this point, as you prepare to manoeuvre around them, that they speed up a little and begin to zigzag back and forth before you. As you try to anticipate a gap in which to ease passed they begin to vary their speed, randomly quickening and slowing, meandering left and right. You draw level and try to squeeze by. The old lady, with out looking or giving the slightest hint of intention, suddenly changes direction and bumps into you side on. She glares at you. “I do wish you would watch where you are going, young man!” she says. Then she pauses, taking in the wheelchair, and asks. “Where's your Mummy or Daddy?”

Tips for people who can walk.

1. Walk in a straight line. Don't zigzag- It's not clever and it's not funny.

2. Don't stop abruptly. Slow to a halt. 1f you can't do this then at least wear warning lights on your back.

3. Maintain a constant pace. Speeding up and slowing down randomly is just plain mean. Leave variable speed to those of us with electric motors and adjustable power settings.

4. Remember you share pavement (sidewalk) with other users. It is not a lavatory for your dogs, nor is it the ideal place to leave gum. Wheels are harder to clean than shoes.

5. Stopping at the narrowest point of the pavement (eg between a bin and bollard, tree or lamppost) for a conversation is selfish. Don't do it. Ever.

6. Waving a cigarette around at waist height while you walk is tantamount to poking me in the eye with it. Don't be upset if I throw take-away coffee over it. Or you.

And don't get me started on umbrellas.

Lies, Damn Lies And Statistics

My cyber-friend, Blake, at I Hate Stairs, tells me he has had a problem posting a comment here at How To Be An Inspiration. As far as I can tell all is well this end but knowing my expertise with computers and internet type things I will be the last to know if my blog has contracted a problem. I would be most grateful if a few of you reading this would leave a comment so I can see if the problem is wide spread. If you do have a problem please drop me a line at – h2bai*stephendeal.org (replace the * with a @ to help foil those nasty spammers). Thanks Blake for bringing it to my attention, but I hope you don't mind if I wish the problem was yours because you, at least, have a fighting chance of knowing how to fix it. I've found that weeping and banging the computer with a shoe has very little maintenance or restorative properties. Meanwhile, check out Blake's wheelchair stalking post. Be afraid, very afraid.

Over at Disaboom, where I also post these posts, cherylberyl has asked how I came up with the figures I did for the Disaboom posts when I wrote I'm 100 Today! Okay. Well, Disaboom, although a marvellous resource, is pretty useless when it comes to tracking your blog's statistics so a degree of extrapolation is required. Google Analytics provides a smorgasbord of statistics for my How To Be An Inspiration site, so I know how many visitors I have per day and per month. I also know if it is the same demented soul visiting time and time again or lots of discerning individuals visiting once or twice. So, at Disaboom I total up the number of visits per post for the last month (not the last 30 posts) and divide by 30. This gives me an average number of visitors per day. Google Analytics reveals that I have, for example, 900 visits from 300 unique visitors over the last month on How To Be An Inspiration, so assuming Disaboom blog readers behave in much the same way as Google blog readers (and I realise that's a major assumption) then if I have had, say, 1500 visits to my Disaboom posts over the last 30 days then it is likely that 1/3 are unique visitors. Therefore it is not unreasonable to say I have a regular Disaboom readership of 500 individuals in this example. Yes, I know there are a lot of assumptions but until Disaboom stop treating every post as an unique blog then it's the best I can do. Tim, if you are reading this, maybe you can help.

And finally, a few months a go I joined Facebook, which once you get past the countless invitations to hug, grow flowers, drink beer and all manner of cyber-silliness, has proven to be great fun, putting me back in touch with several people from my dim and distant past. (Hi Brian, Tony, Jonathon etc.) I have been trying to get this blog to show up on my Facebook page but it seems to require large numbers of people prepared to concede that I write this before it will let me, and even more people prepared to admit they read it before any meaningful statistics can be gathered. If you are on Facebook, and have not already done so, then please, be my 'friend'. I'll be yours. Look for Stephen Deal and this photo.

Thank you for reading.

Drowning At The Dentist

You learn something new everyday. Today I learned that you can drown at the dentist.

My dentist is one of those rare creatures, an NSH dentist. He is based in the grounds of a now eerily deserted hospital that is slowly being converted to 'luxury' family homes. Once a bustling mix of health and community service buildings, residential homes, wards, mental health facilities, nurseries and all manner of disparate NHS bits and bobs, set in several acres of tree dotted green fields, the site is now littered with sealed up buildings and groups of yellow helmeted surveyors measuring up the space for development. Here and there the odd service survives; the wheelchair service occupies a building and my dentist another. The dental surgery was once part of a complex that included a GP surgery and a physiotherapy department, but they have been relocated and so the dentist and his assistant occupy a huge building all by themselves. This will be my last visit to the site before the practice moves to another location and the echoing building is razed to the ground to make way for 2 or 3 bedroom executive residences.

When I arrived the waiting room was empty so I was denied the chance to read three year old magazines and was instead ushered straight in. I positioned myself adjacent to the dentist's chair and tilted my wheelchair back. The dentist, an Asian gentleman with reassuringly spectacular white teeth, positioned the light and said, “let's have a look.” A few minutes of probing later and he declared that all was well apart from a little tartar that he would now remove.

Armed with the dental equivalent of a pressure hose he proceeded to blast the offending calculus from my teeth while his assistant wielded a mini vacuum cleaner to suck away the debris and excess water. And therein lay the problem. Suck as she might, water trickled to the back of my throat as I lay back in my chair. Whereas normally I would have swallowed the excess water I found that in my prone position I couldn't. And when I breathed I found that I was breathing in the water. Not wanting to make a fuss I endured this for as long as I could, before having a coughing fit and shaking the various implements from my overflowing mouth.

We tried again but it was no good. Each time I ended up coughing and gagging on water, being looked down upon by an anxious dentist. Eventually we resorted to old fashioned scraping. Slightly more painful but better than drowning. Less embarrassing too.

Home Alone - ish

Polly has been away for a girly weekend with her friends from the school so I've been left to fend for myself. I say by myself but I mean by myself and with a little help from my friends. By myself apart from Elly who came on Friday evening to look after the boys while I was at the cinema (Max Payne – don't bother) and slept over 'just in case'. Apart from Kalapo and Godfrey who came each evening and morning to put me in and get me out of bed. Oh, and the two district nurses who turned up on Saturday and Sunday afternoon to help me go to the loo. And Jason, a paramedic and friend who came later on in the day to help me go again. Then there was Anna and PJ who came over on Saturday late afternoon. Anna took the boys for a sleepover and PJ stayed and we had a take-away together. Oh, and Karen, who popped in with her son Tristan and joined us. PJ slept over 'just in case'. But apart from them, I was all alone, all weekend. So lonely.

I'm 100 Today!

Welcome to my 100^th post.

That's 100 little billets-doux from me to you. If you have read the whole lot then you've read well over 50,000 words.

I've had a little rummage around the blogosphere to see how this blog compares to others of a similar ilk. I don't just mean other disability themed blogs but others in the whole 'online journals and personal sites` category as defined by the clever people at Google Analytics. Apparently such sites get an average of just over 1 visit per day. This site averages 27.4 at How To Be An Inspiration and 45.8 at Disaboom, so on average, I am delighted to report, 67.2 come and at least glance at what's been written every day. It's harder to work out if it is the same demented person is obsessively visiting time and time again or lots of different people. Google Analytics helps again and tells me that (at least) 250 separate individuals visit How To Be An Inspiration and I can extrapolate that (approximately) another 500 at Disaboom. So, if you are reading this you may well be one of some 750 regular readers. Okay, it's not world beating but I'm pleased. If you are not a regular reader then you probably think you've wandered in to a maths lesson. Sorry. I won't mention stats again until the anniversary post next April.

I love writing this blog for a number of reasons. When I was touring with a theatre company a few years ago we regularly attended festivals and youth camps. I think it must have been in the late 80s and we were performing at an international youth camp when one of the organisers approached me and said “you must meet Toni”. Toni turned out to be a young women in a wheelchair. We were introduced and left a lone with each other on a balcony over looking a sea of tents. “Hello,” I said. “Hello,” said Toni. We sat together for ten minutes hardly saying a word to each other. Then Toni said “I hate it when they do this. You're in a wheelchair, I'm in a wheelchair...” “We must be friends!” I finished. As it turned out Toni and I got on fine but the only thing we had in common was that we both used wheelchairs. The truth is I don't have disabled friends. I have a disabled brother and had a disabled father so I'm not against cripples per se, but aside from some acquaintances and the guy who checks the tickets at the cinema, I don't know other disabled people. And quite frankly I was happy with the way things were. After all, if they were all as moany and ill humoured as me, then why bother? But then, back in April I started this blogging business and found myself in touch with the online 'disabled community' and what do you know? There are loads of them out there, the sick, the lame and blind, and not all of them are whining and witless. In fact, quite a few are funny and fun to be in contact with. I've come to genuinely appreciate being part of a community of people who share a lot of the problems, joys and world views that I have. It has been a real bonus to the main reasons I write this material.

I started this blog because I had become aware that my condition, FSH Muscular Dystrophy, was undergoing one of its periodic periods of decline. Movements and transfers were becoming harder and as a result I was pulling muscles and hurting myself' more frequently. I could feel myself withdrawing and pulling inwards. Polly had been encouraging me to start writing again and I'd just bought a new laptop PC with enough processing power to decipher my handwriting scrawl and was keen to try it out. I'm not saying that I was depressed or contemplating my mortality but I was aware that I have led an atypical life for a severely disabled person. I'm married with children, have worked and travelled, lived independently and come as close to death as it is possible to get but survived. I've met and worked with many interesting people, won awards, been betrayed and been loved. Come to think of it I'm not sure anyone, disabled or otherwise, has a typical life, but the fact remains, I have stories to tell; stories I wants my children to know. I'd also like friends and people I know know how much they mean to me. And, of course, I'd like someone to know how bloody irritating life can be in a world full of literal and metaphorical steps when you are sat in a wheelchair. Who knows? If enough of us keep pointing out the peculiarities and iniquities someone may listen. And in the meantime there's plenty to laugh at.

Thank you for reading. I'm now aiming at 1,000 regular readers so, please, spread the word. And yes, emails and comments mean a lot, so please stay in touch. I suppose I would still write this if no one was reading but it wouldn't as much fun. And if you are writing your own blog please keep writing. Where else can I nick ideas from? I call this blog How To Be An Inspiration as a personal joke at myself, but in truth, it's you who inspire me.

On to the next 100.

Grit In The Shoe Of Life

Continuing with the moany old git theme. Disability is rubbish. Let's face it, very very few would decide to opt for it as a lifestyle of choice. Yes, I know that I should accentuate the positive and eliminate the negative and all that, but all in all, I think most of us would agree that we'd forego the advantages of a blue badge in exchange for dropping the dis in disability. However, despite the assurances of Falwell. Bakker, Swaggart, Oral Roberts, et al, faith and an open heart are no match for genetics or a severed spinal cord, and we have to live with the cards we've been dealt. Moaning does no one any good. (Long time readers of this blog are now raising eyebrows and wondering where I'm going with this.) So, in complete acceptance that it will make no difference whatsoever, here are 3, non-medical, things that irritate me about my personal situation. All are minor, all are merely the grit in the shoe of life.

Talking to navels
As a wheelchair user I spend a great deal of time talking to peoples midriffs. This is usually because people stand to close and I am either forced to stare straight ahead and address their waists or crotches depending on their height, or crane my neck and talk to their chins. Step back, or better yet, sit down if you wish to engage me in conversation. Sometimes, when I have the space, I play a little game. I move my chair away from the person a couple of feet or so to make easier eye contact, if for some reason they step forward and close the gap I wait a moment and then move again. If they close the gap I move again, keeping the conversation going. The aim of the game is to move the person from the starting point to the target point, which may be the other side of the room, the buffet or, indeed, the exit. In the past I've managed the full length of a school hall.

Being Grateful
When you are severely disabled you spend a lot of time saying thank you. Because you are reliant on other people for so much you feel obliged to express appreciation. This is because you don't wish to appear to take their assistance for granted, but, just occasionally, you run low on gratitude. I was once working in Madrid when my Spanish host expressed astonishment at how often the British say please and thank you. “You buy a cup of coffee. You say to the waitress 'please may I have a cup of coffee, thank you.' She says yes. You say thank you. She brings the coffee. You say thank you. You say 'how much, please?' She tells you. You say thank you. You give her money and say thank you. She takes the money, you say thank you. She offers you the change, you say thank you. You take the change from her and say thank you. And then you don't say good bye. You say thank you.” Sometimes it feels as if my whole life is a transaction for a cup of coffee. “Please can you move my foot. Thank you.” “Please can you help me cut this steak. Thank you.” “Please can you hurry with the hoist because I'm dying to go to the loo. Thank you.” “Please can I have my computer so I can moan about you. Thank you.” “Oh, and please may I have a cup of coffee. Thank you.” Please don't misunderstand me, I am sincerely grateful and appreciative of the help and support I receive, I couldn't live without it. It's not as if I could make my own coffee with out having to express thanks and gratitude to the staff at the local burns unit. Thank you for reading.

In your own time
This, in many ways, follows on from the last one. I spend a lot of my life waiting for people. I wait each morning for carers to arrive and get me up. They usually arrive at the agreed time but occasionally things beyond their control get in the way. (Damn that elderly man for needing an ambulance.) I wait for it to be convenient for someone to make me coffee. Recently I had to wait for district nurses to come and help me go to the loo. This weekend Polly is going away for a girly weekend. We rang the district nurses to organise them to come in. They said yes, of course they'd come. Once. Once in twelve hours. We've sorted something out but no thanks to them. I wait for carers to help me get to bed. This time they tend to arrive earlier than I would care for them to. Last Monday I went to see Quantum of Solace at the local multiplex. The film ended (with explosions and a can of motor oil) at 8.50pm, not too late for a grown up I think you'll agree, but by the time I got home at just after 9.00 there were 2 carers waiting for me. Then I felt guilty for keeping them waiting. Now I know that we all have responsibilities and are interdependent on others, but sometimes my dependency grates on me. Now, you see? I'm being terribly ungrateful. Next thing you know I'll be talking to your crotch.

Crabby

Oh I'm a moany old git today. I had an appointment at the Royal Brompton Hospital this afternoon, the result of reaching near breaking point a while ago. (See - A Series Of Unfortunate Events) The good Dr Toosy wisely decided to have my current medical situation assessed by the mighty minds of the Brompton and (early next year) some one at Kings. So, today, Polly, Matty (off school with what Sam had last week) and I ground our way through the London traffic, waving at snails as they whizzed by, to Kensington. Parking in the area around the hospital is virtually non-existent, with about 9 disabled parking spaces to share between both of the hospitals main buildings. We found one of the precious bays unoccupied for a nano-second and nipped in, no doubt causing some one with an iffy leg to have to pay at one of mortgage requiring 'normal' parking spaces.

On the way up Matty had been asking about our astrological birth signs. I'd given my stock response, “I'm Pyrex and your mother's Caesarean,” but Polly admitted to being Libra and told him I was Cancer.” “The crab?” “There's no one crabbier,” remarked Polly. Then warming to her theme, “he's so crabby he moves sideways.” The reason Matty was asking about this nonsense was not because we were encouraging his enquiring mind to explore new age mysticism but because it had been mentioned on The Sarah Jane Adventures, a spin-off of Matty's beloved Dr Who.

Anyway. . .

We waited on Lind, a corridor on the top floor, for a doctor to see us. The clinic is always busy, full of people who for the most part make me look like an Olympic athlete. (Mind you, they probably look at me and wouldn't fancy my chances in the 110 metres hurdles.) Eventually, after blood had been taken from my ear-lobe and tested for various gasses, we got to see Consultant Dr Michael Polkey, who is, as all the staff are, very nice. Apparently my blood gasses are fine. . . and that's it really. There is not a lot more they can do. They did, very kindly, offer to take me in for the odd weekend if I need a break. And he was very sympathetic and supportive, prepared to write as many letters as we need writing to any one who we think might be able to help. The trouble is, I can't think of anyone for him to write to. Does anyone know the address of good stem-cell researcher?

The journey home made the journey there feel like Lewis Hamilton's qualifying lap at Monte Carlo. Tortoises and three-toed sloth rush passed us as we crawled home to pick up Sam from where he was being looked after. So, there goes another afternoon of my life I won't get back. Bah humbug.

A Pause

A brief respite from the American saga while I bring you up to date with events here at home. I'm sick again. Not very, thank God, but enough to be irritable and out of sorts. The culprit is Sam again. He has had a cough and has had to be off school all week. To complicate things, Polly has been doing another Clown Doctor training week. She has been coming home with a bizarre mix of tales of dying children and improvised comedy routines. But at least the district nurses turned up this week so I could go to the loo.

I'm taking a course of antibiotics in an attempt to head off a major chest infection. The pills are the size of small tombstones. How come they can shrink a camera, music player and games machine in to a microscopic mobile phone but can't gets a drop of medicine in to anything less than a stick of chalk?

I'll also take this opportunity to point you towards my old friend Paul 'Rock God' Loader's new blog How To Be A Bonafide Rock God. If you've ever wondered what it is like at the very bottom of the music business (think barrel, scrape etc.) this funny, honest and occasionally literate blog is worth a few minutes of your precious time. And if you are a parent of a would be X-Factor contender with dreams of super stardom, point them at this and show them how they'll probably end up. I mock Paul, because frankly I don't know how to do anything else, but this is a guy who actually gets paid to perform and has done so for some 30 years. That's a heck of a long time to gather stories of the reality of rock 'n' roll.

America - Heritage USA

At one time Heritage USA was the third most visited attraction in the States, after Disneyland and Walt Disney World. That was in 1986, now, less than 10 years later, it was fighting a losing battle against becoming a wilderness. 2,300 acres of anti-climax. To give you an idea of the size, you could fit the original Disneyland, UK's Blackpool Pleasure Beach, Six Flags Great America, and Universal Studio's Florida all inside the grounds together, and still have room for a few Wembley stadiums (stadia?) left over.

At myinsistence we had travelled to Fort Mills in South Carolina to visit televangelist Jim Bakker's Christian theme park. I had seen a documentary about it sometime earlier and, admittedly with an eye on satire, was keen to see the place. It had boasted a 501-room Grand Hotel, Main Street Shoppes (sic), the Heritage Village Church, a 400-unit campground, an amphitheater, conference facilities, prayer and counseling services, full TV production studios, Bible and evangelism school, visitor retreat housing, staff and volunteer housing, and the vast Heritage Island Water Park and recreational facilities including tennis, fishing and a petting zoo. At one time the Passion was enacted daily and you could visit the Upper Room.

The water park, which had once been the centre piece of the whole place was now derelict, a mass of pastel coloured concrete. The huge Typhoon water slide, down which it was possible to reach speeds of up to 40 mph, was clearly visible. We found a swimming pool nearby that was still functional and the party I was with had a swim. I was anxious to look around.

We found our way to an indoor shopping street that was lit as if it were a star-lit night. It had the best Christian tat for sale I've ever seen. You could insert pictures of your children meeting a suspiciously European looking Jesus in to an oil painting. There were King James Bibles for your Gameboy and enough Olive wood crosses to build an ark. The fast food restaurant sold Goliath burgers and Moses milkshakes. Fantastic.

I won't go in to the history of Heritage USA, you can find the details on the web easily enough. It is enough to say that its demise was wrapped up in some dubious financial dealing, a sex scandal, and some bitter infighting between various high profile televangelists. All very sad and distinctly 'unchristian'. At the heart of it all was Jimmy and Tammy Faye Bakker's PTL organisation.

So why was I so interested in Heritage USA? Why, aside from a chance to feel pompously superior and to gape at fallen extravagance, had I dragged our party to this now rather sad place? Two words. Kevin's House.

Kevin was a severely disabled teenager who had been adopted by some relative of the Bakker's. Jim and Tammy Faye raised millions of dollars to have a house built for him. Now, the facts are murky and hard to come by even with the internet at my finger tips, but I seem to remember that there was some question as to where all the money went. (Surprised?) But most amazing to me was the rumour that the house had been built all right, but that there was very limited disabled access. I had heard that poor Kevin had to be manhandled up the stairs to his room. I wanted the truth. Kevin, who died a little while after the house was built was regularly wheeled out to ask for money on the PTL television show, uttering the immortal words “they wouldn't ask unless they needed it.”

Well, the house was there. I saw it with my own eyes. But I couldn't gain access. It was closed to the gawping public. I will probably never know now. The house burned down in 2002. Arson was suspected. So, if you know the truth please let me know. Was the house wheelchair friendly? Was it all a fund raising con?

Heritage USA has been broken up into smaller concerns today, I'm told. Tammy Faye died last year and I can't be bothered to find out about Jim Bakker.

Next time – The last plane out of Georgia.