I'm sorry that I appeared to have disappeared from the blogosphere recently, I'm all right, honestly. A combination of annoying difficulties to do with actually typing words, sheer business and a run of good weather have conspired against my blogging duties. Thank you to those who enquired as to my virtual whereabouts During my hiatus various things have been happening.
Polly and I made the trek in to London for one of my regular appointments at the Royal Brompton Hospital. While I waited among the wheelchairs and breathing apparatus Polly went on to her Clown Doctor office in Islington to sort out her expenses form. I read my book and waited, nodding occasionally to nurses, doctors, phlebotomists and sundry support staff I have come to know over the years, and watching the assembled disabled folk wheezing and waiting. Steve, a technician, took blood from my earlobe and tested my blood gasses and eventually I was ushered in to the consultant's consulting room. Dr Simmonds checked me over and pronounced that my carbon dioxide levels are elevated and that they could, in theory, be exacerbating the somewhat unnervingly rapid deterioration in my muscular dystrophy. More time on the BiPap will be required and the various settings will need to be adjusted to compensate. On the plus side, it might help.
By way light relief, and it being half-term, we took the boys to the cinema to see A Night In The Museum 2. It being half-term and raining the cinema was packed full of screaming, overly excited children, all munching vast buckets of popcorn and other noisy comestibles. We had to wait until a later screening than we had intended and had to queue for what seemed like hours by a poster advertising a film called Drag Me To Hell. Enough said.
I've more to tell you but my patience with tapping out one letter at a time has worn thin.
Oh, by the way, we're off to the Mobility Roadshow near Cirencester on Thursday, so if you are intending to go, drop me a line or leave a comment and maybe we can rest our weary wheels and grab a coffee together.
Bye for now. I'll be back soon.
Showing posts with label comedy. Show all posts
Showing posts with label comedy. Show all posts
Tuesday, 2 June 2009
Friday, 1 May 2009
It Should Have Been Me
May 1st is Blogging Against Disablism Day, a highlight in the disability blogging calendar, if you can imagine such a thing. Here is my contribution.
There I was, flicking through the pages of Mobilise, a magazine promoting mobility for disabled people, something I'm sure we'd all agree is a good thing. (Promoting mobility I mean, not flicking through the pages of a magazine. We disabled folk are notoriously sedentary.) Anyway, there I was, gazing at adapted vehicles with sexy aluminium ramps and scooters with five wheels for extra stability, when there between an article about a kid taking his local bank to court over access issues and one about Naidex '09, a conference promising innovative features, new products and educational seminars (wow!), there was an article that might change my life and give me a bite at the reality TV cherry. BBC 3 are looking for wannabe wheelchair dancers. Sign me up.
“BBC 3 seeks wheelchair users”, the article read. “Would you like to try something new?“ it continued. “Fancy learning to dance?” Would I ever! “If so, BBC 3 would like to hear from you. We are searching for wheelchair users to get involved in an exciting new series.” This could be my breakthrough moment. Dancing on wheels. I had Polly phone the contact number straight away.
The conversation started well. I have a history in the the arts, I'm married to an actor for crying out loud. I am disabled and I use a wheelchair! I'm articulate. Okay, my speech is a little bit slurry but the subtitles would be a hoot. The nice young man at the television production company was starting to sound excited. He obviously was beginning to think he had found his Ray Quinn, or at least his John Sergeant. (Sorry if you are reading this outside of the UK, you'll have to take a guess at the cultural references.) Polly told him she assumed they were looking for couples and was preparing to assure him she could hoof with best of them when he told her they intended to partner the wheelchair dancers with able-bodied professionals. I felt disappointed for Polly but stoically imagined myself partnered with some nubile, Lycra-clad beauty, prepared to perch sensually and artistically on my foot-plates for the sake of entertainment. I heard Polly tell him she imagined I wouldn't mind too much but that she hoped my costumes would be particularly lurid and skin-tight so as not to be out shone. “He'd like lots of sequins and colourful feathers,” she assured him whilst smiling at me malevolently.
I was mentally preparing to sign on the dotted line and was jiggling my joystick to a Latin rhythm in anticipation of reality TV fame and hoping that readers of this blog would vote to keep me in week by week, when I was dealt a devastating blow. I heard Polly say, “an electric wheelchair, a Samba Quickie... Oh.” I could tell from her face that she was not hearing good news. “No, he can't use a manual chair any more.”
After she put the phone down she explained that, simply put, I am too disabled to appear on a disability based reality TV show. How unfair is that? I mean, my chair is named after a dance! But oh no, they want able-bodied disabled wheelchair users who can whirl and twirl on two wheels and who don't need recharging after every Foxtrot and Argentine Tango. The show will never amount to anything without me, mind you. My Bosa Nova on four wheels would have been a televisual water-cooler moment in history. It hurts me to know you'll never see it.
But then, to rub salt in the wound, Polly was told they are hoping that wheelchair users will come and be in the audience. I ask you! Who would want to see a bunch of cripples roll around a dance floor when one of them isn't me? I'm thinking of pitching my own idea for a reality TV programme, Wheelchair Death Race, where wheelchair users slalom down a steep hill knocking over celebrities en route. Now that's entertainment.
There I was, flicking through the pages of Mobilise, a magazine promoting mobility for disabled people, something I'm sure we'd all agree is a good thing. (Promoting mobility I mean, not flicking through the pages of a magazine. We disabled folk are notoriously sedentary.) Anyway, there I was, gazing at adapted vehicles with sexy aluminium ramps and scooters with five wheels for extra stability, when there between an article about a kid taking his local bank to court over access issues and one about Naidex '09, a conference promising innovative features, new products and educational seminars (wow!), there was an article that might change my life and give me a bite at the reality TV cherry. BBC 3 are looking for wannabe wheelchair dancers. Sign me up.
“BBC 3 seeks wheelchair users”, the article read. “Would you like to try something new?“ it continued. “Fancy learning to dance?” Would I ever! “If so, BBC 3 would like to hear from you. We are searching for wheelchair users to get involved in an exciting new series.” This could be my breakthrough moment. Dancing on wheels. I had Polly phone the contact number straight away.
The conversation started well. I have a history in the the arts, I'm married to an actor for crying out loud. I am disabled and I use a wheelchair! I'm articulate. Okay, my speech is a little bit slurry but the subtitles would be a hoot. The nice young man at the television production company was starting to sound excited. He obviously was beginning to think he had found his Ray Quinn, or at least his John Sergeant. (Sorry if you are reading this outside of the UK, you'll have to take a guess at the cultural references.) Polly told him she assumed they were looking for couples and was preparing to assure him she could hoof with best of them when he told her they intended to partner the wheelchair dancers with able-bodied professionals. I felt disappointed for Polly but stoically imagined myself partnered with some nubile, Lycra-clad beauty, prepared to perch sensually and artistically on my foot-plates for the sake of entertainment. I heard Polly tell him she imagined I wouldn't mind too much but that she hoped my costumes would be particularly lurid and skin-tight so as not to be out shone. “He'd like lots of sequins and colourful feathers,” she assured him whilst smiling at me malevolently.
I was mentally preparing to sign on the dotted line and was jiggling my joystick to a Latin rhythm in anticipation of reality TV fame and hoping that readers of this blog would vote to keep me in week by week, when I was dealt a devastating blow. I heard Polly say, “an electric wheelchair, a Samba Quickie... Oh.” I could tell from her face that she was not hearing good news. “No, he can't use a manual chair any more.”
After she put the phone down she explained that, simply put, I am too disabled to appear on a disability based reality TV show. How unfair is that? I mean, my chair is named after a dance! But oh no, they want able-bodied disabled wheelchair users who can whirl and twirl on two wheels and who don't need recharging after every Foxtrot and Argentine Tango. The show will never amount to anything without me, mind you. My Bosa Nova on four wheels would have been a televisual water-cooler moment in history. It hurts me to know you'll never see it.
But then, to rub salt in the wound, Polly was told they are hoping that wheelchair users will come and be in the audience. I ask you! Who would want to see a bunch of cripples roll around a dance floor when one of them isn't me? I'm thinking of pitching my own idea for a reality TV programme, Wheelchair Death Race, where wheelchair users slalom down a steep hill knocking over celebrities en route. Now that's entertainment.
Friday, 10 April 2009
Thieves Paradise
Since today is Good Friday I thought I'd share this sketch from the show Burning Questions. I have to admit that this is one of my favourite sketches, not least because, although it always got big laughs, I was once accosted after a show and told I would probably burn in hell for mocking our Lord on the cross and should be ashamed of ever having written it. A little harsh I thought but see what you think.
THIEVES PARADISE
[THE SKETCH TAKES PLACE IN THE BAR OF THE LOCAL PUB. THE TWO
CHARACTERS MAY BE SUPPING FROM BEER GLASSES.]
A:
It near broke my heart to see old Barney hanging there.
B:
Hanging where?
A:
On a big wooden cross.
B:
So why was he doing that?
A:
Well mostly because of the nails.
B:
What, real nails?
A:
Yes.
B:
That's a bit barbaric. You could kill someone like that.
A:
They did. Barney, Jim and that Jesus.
B:
So Barney's dead is he?
A:
Yeah, he was crucified.
B:
Nasty.
A:
He was a good bloke.
B:
Well, he wasn't that good. He was a thief. That's why they crucified him I expect.
A:
Yes, but he was a good thief.
B:
No he wasn't. He got caught.
A:
He never had any luck.
B:
No.
A:
Fancy breaking into a geezer's house when you absolutely positively know he's not going to be there, and then being caught in the act when he comes home totally unexpected.
B:
Yeah. What was that bloke's name again?
A:
Lazarus.
B:
Chance in a million that.
A:
Yeah. Poor old Barney.
B:
Mind you, Jim wasn't much better. I mean, fancy breaking into a house only to find the owner had given everything away.
A:
Blooming Zacchaeus.
B:
And fancy both of them breaking into that gate keepers house...
A:
Only to be spotted by an eyewitness.
A and B:
Blind Bartimaeus.
A:
Still, in their line of work they knew they were taking a risk.
B:
What about that other bloke?
A:
Who, Jesus?
B:
What was his crime?
A:
It was funny that. No one seemed to know.
B:
What was he? A thief? Con man? Fraudster? Mugger?
A:
Rabbi.
B:
What, a holy man?
A:
Apparently. He had a sign on his cross saying he was the king of the Jews. But I heard people saying that he was the Son of God.
B:
If he was the Son of God, what was he doing nailed to a cross?
A:
That's what Jim said. He gave him a really hard time, mocking him and shouting at him to save himself and them.
B:
Jim was a hard man.
A:
As hard as nails.
B:
Not quite... What about Barney?
A:
Barney was a bit different. He seemed to recognise something in Jesus.
B:
It's a pity he didn't meet him earlier. He might not have ended up where he did.
A:
They seemed to get on well enough though, given the circumstances.
B:
How do you mean
A:
I heard Barney ask if Jesus would remember him when he came into his kingdom.
B:
As if Jesus didn't have enough on his plate.
A:
That's what I thought. But Jesus made him this promise, see?
B:
What kind of promise can you make to a dying man?
A:
He said, "I tell you the truth, today you will be with me in paradise".
B:
What do you think he meant by that?
A:
That he was for... for... for...
B:
Four sheets to the wind?
A:
No, that he was for... for... for...
B:
For he's a jolly good fellow?
A:
No, that he was for... for... for...
B:
Fortunate?
A:
Hardly. No, that he was forgiven.
B:
Oh.
A:
Yeah, nice thought that.
B:
Any way, I'm going to miss old Barney.
A:
Yeah, but at least his suffering is over.
B:
Was that Jesus the same bloke who's been preaching all over the place?
A:
I suppose so, yeah.
B:
I heard him once.
A:
Oh yeah?
B:
I hope that when he made him that promise he knew what Barney's profession was.
A:
What do you mean? A housebreaker? Well what does that matter now?
B:
Because it was Jesus who said, "In my Father's house are many mansions."
A:
Then Barney really will be in paradise.
© Stephen Deal, 1993
THIEVES PARADISE
[THE SKETCH TAKES PLACE IN THE BAR OF THE LOCAL PUB. THE TWO
CHARACTERS MAY BE SUPPING FROM BEER GLASSES.]
A:
It near broke my heart to see old Barney hanging there.
B:
Hanging where?
A:
On a big wooden cross.
B:
So why was he doing that?
A:
Well mostly because of the nails.
B:
What, real nails?
A:
Yes.
B:
That's a bit barbaric. You could kill someone like that.
A:
They did. Barney, Jim and that Jesus.
B:
So Barney's dead is he?
A:
Yeah, he was crucified.
B:
Nasty.
A:
He was a good bloke.
B:
Well, he wasn't that good. He was a thief. That's why they crucified him I expect.
A:
Yes, but he was a good thief.
B:
No he wasn't. He got caught.
A:
He never had any luck.
B:
No.
A:
Fancy breaking into a geezer's house when you absolutely positively know he's not going to be there, and then being caught in the act when he comes home totally unexpected.
B:
Yeah. What was that bloke's name again?
A:
Lazarus.
B:
Chance in a million that.
A:
Yeah. Poor old Barney.
B:
Mind you, Jim wasn't much better. I mean, fancy breaking into a house only to find the owner had given everything away.
A:
Blooming Zacchaeus.
B:
And fancy both of them breaking into that gate keepers house...
A:
Only to be spotted by an eyewitness.
A and B:
Blind Bartimaeus.
A:
Still, in their line of work they knew they were taking a risk.
B:
What about that other bloke?
A:
Who, Jesus?
B:
What was his crime?
A:
It was funny that. No one seemed to know.
B:
What was he? A thief? Con man? Fraudster? Mugger?
A:
Rabbi.
B:
What, a holy man?
A:
Apparently. He had a sign on his cross saying he was the king of the Jews. But I heard people saying that he was the Son of God.
B:
If he was the Son of God, what was he doing nailed to a cross?
A:
That's what Jim said. He gave him a really hard time, mocking him and shouting at him to save himself and them.
B:
Jim was a hard man.
A:
As hard as nails.
B:
Not quite... What about Barney?
A:
Barney was a bit different. He seemed to recognise something in Jesus.
B:
It's a pity he didn't meet him earlier. He might not have ended up where he did.
A:
They seemed to get on well enough though, given the circumstances.
B:
How do you mean
A:
I heard Barney ask if Jesus would remember him when he came into his kingdom.
B:
As if Jesus didn't have enough on his plate.
A:
That's what I thought. But Jesus made him this promise, see?
B:
What kind of promise can you make to a dying man?
A:
He said, "I tell you the truth, today you will be with me in paradise".
B:
What do you think he meant by that?
A:
That he was for... for... for...
B:
Four sheets to the wind?
A:
No, that he was for... for... for...
B:
For he's a jolly good fellow?
A:
No, that he was for... for... for...
B:
Fortunate?
A:
Hardly. No, that he was forgiven.
B:
Oh.
A:
Yeah, nice thought that.
B:
Any way, I'm going to miss old Barney.
A:
Yeah, but at least his suffering is over.
B:
Was that Jesus the same bloke who's been preaching all over the place?
A:
I suppose so, yeah.
B:
I heard him once.
A:
Oh yeah?
B:
I hope that when he made him that promise he knew what Barney's profession was.
A:
What do you mean? A housebreaker? Well what does that matter now?
B:
Because it was Jesus who said, "In my Father's house are many mansions."
A:
Then Barney really will be in paradise.
© Stephen Deal, 1993
Tuesday, 31 March 2009
A Day In The Life
Polly has been off Clown Doctoring at a hospital in London somewhere. I'm not allowed to give you too many details but it involves her speaking in a west country accent and saying 'curly-wurly' a lot. Oh, and she wears a carrot on her shoulder. As she left this morning she called out to me, “Have a good day,” and then she vanished into the metropolis. I settled down for a 'good' day, by which I mean quiet, and booted up the computer to check emails and manage my football team on Facebook.
11.00am The doorbell shrills and shrieks and warbles at aircraft taking off volume to indicate someone has arrived at the front door and wants my attention. I may have mentioned before that our doorbell is VERY loud because I am disabled, and therefore, presumably deaf. (Visitors to the flat who are here when it rings often think it must be a fire alarm and start tying sheets together in the hope of making their escape.) I attempt to use our intercom system to let whoever it is in but this proves easier said than done. It is supposed to operate via an 'environmental control' system but doesn't any more, so I have to manually push buttons on a unit fitted to the wall. On bad days it can take several minutes for me to align myself in such away so as to be able to press first the 'talk' button and then the 'enter' button. Often, by the time I have, whoever it was who rang the bell has grown old and given up. Today is an okay day and I manage to let the visitor in after he has identified himself as an engineer. You can be sure that if he had said 'robber' I would have asked for further identification. The engineer turns out to be from the Royal Brompton Hospital and has come to fix the BiPap ventilator which has been beeeeeeeeeeping all night for no good reason. (Polly maintains that the alarm should only go off if I am seconds away from death, and only then if it has tried to resuscitate me by itself.) 20 minutes later the engineer gives up and replaces the machine.
11.40am The ear-splitting doorbell goes again. Once again I successfully negotiate the entry system and once again someone identifying themselves as an engineer comes in. This one, from a company whose name is made up entirely from initials, has come to fix the back door opener. He has come equipped with a young man whose job it seem is to hold things. It takes an hour of mild cursing and a lot of Allen keys before the automated door stops opening and shutting of its own accord. The young man passes things beautifully.
12.30pm Kalepo, one of my carers, arrives to help me with lunch and to go to the loo. Fortunately he knows how to let himself in so we are spared being deafened by the doorbell.
2.50pm Once more my ears are made to bleed. This time it is a specialist dermatological district nurse. My skin has been erupting in mini-pimples since a change in my medication. I thought I'd left acne back in my adolescence so I am grateful to see him. He has given me a prescription for a number of salves and lotions that should restore my skin to adulthood.
3.20pm The district nurses (or big stick nurses as Sam calls them) let themselves in and help me go to the loo again. They also wrestle with the coffee-maker, a technology they regard as suspiciously futuristic.
3.50pm Our friend Andi arrives back from the school with Matty and Sam. Within seconds they are arguing about whose turn it is to go on the Playstation 3. I do my daddy thing and make them share.
6.00pm Godfrey, another carer, arrives to help me give the boys their tea that has been in the slow cooker since Polly prepared it this morning.. He leaves 50 minutes later.
7.30pm Both boys fed, showered and ready for bed. Sam read The Avocado Baby, Matty surgically removed from computer. I am the daddy! Now, where's Polly?
7.50pm Polly returns, all curly-wurly'd out.
Friday, 27 March 2009
In The Dead Of Night
Tonight is another night nurse night. Things have improve from the earliest encounters. (See here, here, and here, for previous posts about the night nurse saga.) Aside from some rather iffy understanding regarding how electric over-blankets work and me trying to find the doorbell to press and summon the nurse I have made some progress in getting a nights sleep. Polly is also getting a better nights sleep when she moves to the sofa-bed but the jury is still out on whether the disruption is worth it. Mind you, after last night she will probably be grateful for any sleep at all.
I was awoken at 4.30 this morning by an irate Polly. “What is it now?” she demanded of me. “Do you want a painkiller or what?” I swam into wakefulness and croaked, “what?” (I'm not at my most loquacious at that time of morning.) My mouth was sandpaper dry so I asked if I could have a sip of water. The reaction I got was akin to me having asked her to rustle up a grilled sturgeon with peeled grapes on a bed of larks tongue and slipper orchid petals whilst gently massaging my toes in calf-skin mittens. There are US army patented incendiary devices that give off less heat and fury than my beloved wife early this morning. Bemused I responded wittily with another “what?”
Polly stomped around the bed (or rather as she describes it, climbed around the end of the metal framed bedstead, negotiated the air-mattress pump, stubbed her toe on a wheelchair wheel, tripped over the charging cable and caught her hand in a ventilator hose) and shoved a glass under my nose and indelicately inserted a straw between my parched lips.
“Thank you, darling,” I said and prepared to drift off back to sleep. Polly seemed to find this offensive.”Oh no you don't,” she said through gritted teeth. “Five times! Five times you have woken me up. Don't you dare just go back to sleep.” “What?” I replied. (I swear it was all I could think of to say.) “I haven't done anything.” Talk about 'light the blue touch-paper'. She went incandescent. Apparently I had woken her several times through out the night to move my leg, shoulder or arm. I had absolutely no memory of this, I promise you.
Polly listed the catalogue of interruptions she had endured. “ You keep waking me up by shouting Polly, Polly, help me! Help me! Move my shoulder! Help! Help!” When I intimated that she may be exaggerating I inadvertently took my life in my hands. “It's all right for you,” she growled. “You just go straight back to sleep! I, on the other hand, am left wide awake, unable to go back to sleep, because I'm listening out for for your every groan, creek or fart in case you are suffocating or choking or something!”
All I could think to say was “What?”
Polly stomped back around the bed, stubbing her toe on the battery charger, and crashed huffily back under her duvet. “If you just go back to sleep I will poke you with a sharp stick.” I was going to ask her to scratch my shoulder blade but thought better of it. I closed my eyes instead.
So, tonight, as she snuggles down on the sofa-bed, I hope she appreciates the sacrifice I'm making. Instead of simply calling out for help I will have to press the button on my doorbell and wait for the nurse. That's love that is.
Sleep well.
I was awoken at 4.30 this morning by an irate Polly. “What is it now?” she demanded of me. “Do you want a painkiller or what?” I swam into wakefulness and croaked, “what?” (I'm not at my most loquacious at that time of morning.) My mouth was sandpaper dry so I asked if I could have a sip of water. The reaction I got was akin to me having asked her to rustle up a grilled sturgeon with peeled grapes on a bed of larks tongue and slipper orchid petals whilst gently massaging my toes in calf-skin mittens. There are US army patented incendiary devices that give off less heat and fury than my beloved wife early this morning. Bemused I responded wittily with another “what?”
Polly stomped around the bed (or rather as she describes it, climbed around the end of the metal framed bedstead, negotiated the air-mattress pump, stubbed her toe on a wheelchair wheel, tripped over the charging cable and caught her hand in a ventilator hose) and shoved a glass under my nose and indelicately inserted a straw between my parched lips.
“Thank you, darling,” I said and prepared to drift off back to sleep. Polly seemed to find this offensive.”Oh no you don't,” she said through gritted teeth. “Five times! Five times you have woken me up. Don't you dare just go back to sleep.” “What?” I replied. (I swear it was all I could think of to say.) “I haven't done anything.” Talk about 'light the blue touch-paper'. She went incandescent. Apparently I had woken her several times through out the night to move my leg, shoulder or arm. I had absolutely no memory of this, I promise you.
Polly listed the catalogue of interruptions she had endured. “ You keep waking me up by shouting Polly, Polly, help me! Help me! Move my shoulder! Help! Help!” When I intimated that she may be exaggerating I inadvertently took my life in my hands. “It's all right for you,” she growled. “You just go straight back to sleep! I, on the other hand, am left wide awake, unable to go back to sleep, because I'm listening out for for your every groan, creek or fart in case you are suffocating or choking or something!”
All I could think to say was “What?”
Polly stomped back around the bed, stubbing her toe on the battery charger, and crashed huffily back under her duvet. “If you just go back to sleep I will poke you with a sharp stick.” I was going to ask her to scratch my shoulder blade but thought better of it. I closed my eyes instead.
So, tonight, as she snuggles down on the sofa-bed, I hope she appreciates the sacrifice I'm making. Instead of simply calling out for help I will have to press the button on my doorbell and wait for the nurse. That's love that is.
Sleep well.
Sunday, 15 March 2009
Red Nosed Young Carer
If you live in the UK then you can hardly failed to have noticed that last Friday was Red Nose day. Countless people had their hair shaved off (like my friend Harvey) or went to work in their pyjamas, the England football team allowed themselves to be berated for failing to qualify for Euro '08 by a comedy actor for comic affect, and a disparate group of celebs scrambled and clawed their way up mount Kilimanjaro all in an attempt to do something 'funny for money'. The bi-annual telethon has raised in excess of £58,000,000 so far this year and there is almost certainly another 10 or 20 million to come, all in aid of good causes based here and in Africa.
As discussed in the Jerry Bashing post I have mixed feelings about telethons but generally speaking Red Nose day is exemplary, showing that with the right balance of entertainment and information the format works brilliantly. Red Nose day steers a remarkably steady course between evoking sympathy for the various causes and pointing the way to doing something about the problems. For example, your money buys X number of mosquito nets or supports this many workers at a special centre for junior carers. The documentary sections tell moving stories of desperate need but avoids mawkishness and over-sentimentality. The comedy has evolved over the years from rather self-indulgent and amateurish routines to sketches and pastiches of the highest order. (Well mostly.)
One of the good causes highlighted this year was a centre for children who act as carers for disabled family members. The mini-documentary told of a sighted young boy who cared for his blind parents. The young lad cooked and cleaned and did the family shopping without any apparent input from social services or home-care agencies and in his spare time he played selflessly with his disabled younger brother. The story (although surely not the whole one) was both moving and inspiring. Money raised by Red Nose day went to fund a centre where the boy and countless other young carers like him could receive support and, most importantly, have heaps of fun.
Acutely aware of our own situation Polly and I watched with Matty. Polly casually asked him how he felt about such a place. Matt, obviously taken with the fun and games on show, admitted that he'd enjoy visiting a centre like that. Polly cautiously probed further to see how much he identified with the young carers represented on screen. Matty sighed deeply and admitted he sympathised with the boy. “I am a young carer,” he told us solemnly. Polly glanced at me. “Sometimes,” Matty continued, oblivious to our anxiety, “I HAVE to play with Sam.”
“Oh,” said Polly, breathing out slowly. “So you don't feel like you need to go to a centre like the one on the television?”
“I'd like to,” sighed Matty, watching the fun the boy was having. Then he brightened. “I know. You could break Sam's legs! Or give him diabetes! I could go then.”
Sometimes you don't know whether to laugh or cry.
As discussed in the Jerry Bashing post I have mixed feelings about telethons but generally speaking Red Nose day is exemplary, showing that with the right balance of entertainment and information the format works brilliantly. Red Nose day steers a remarkably steady course between evoking sympathy for the various causes and pointing the way to doing something about the problems. For example, your money buys X number of mosquito nets or supports this many workers at a special centre for junior carers. The documentary sections tell moving stories of desperate need but avoids mawkishness and over-sentimentality. The comedy has evolved over the years from rather self-indulgent and amateurish routines to sketches and pastiches of the highest order. (Well mostly.)
One of the good causes highlighted this year was a centre for children who act as carers for disabled family members. The mini-documentary told of a sighted young boy who cared for his blind parents. The young lad cooked and cleaned and did the family shopping without any apparent input from social services or home-care agencies and in his spare time he played selflessly with his disabled younger brother. The story (although surely not the whole one) was both moving and inspiring. Money raised by Red Nose day went to fund a centre where the boy and countless other young carers like him could receive support and, most importantly, have heaps of fun.
Acutely aware of our own situation Polly and I watched with Matty. Polly casually asked him how he felt about such a place. Matt, obviously taken with the fun and games on show, admitted that he'd enjoy visiting a centre like that. Polly cautiously probed further to see how much he identified with the young carers represented on screen. Matty sighed deeply and admitted he sympathised with the boy. “I am a young carer,” he told us solemnly. Polly glanced at me. “Sometimes,” Matty continued, oblivious to our anxiety, “I HAVE to play with Sam.”
“Oh,” said Polly, breathing out slowly. “So you don't feel like you need to go to a centre like the one on the television?”
“I'd like to,” sighed Matty, watching the fun the boy was having. Then he brightened. “I know. You could break Sam's legs! Or give him diabetes! I could go then.”
Sometimes you don't know whether to laugh or cry.
Monday, 9 March 2009
Sweeping The Playground
Last Monday Polly and I were invited to take part in the Daffodil day celebration at Westminster Central Hall in London. The theme was The Earth Is The Lords and about 2000 people attended. Polly performed the poem Red Shift and a sketch called Sweeping The Playground. Both pieces went down really well, I'm pleased to say. A few people have asked about the scripts.
Sweeping The Playground came from the show Hopes And Dreams and was a 2 hander. We converted it to a monologue for this event. Before anyone accuses me of some kind of theological inconsistency I'm absolutely happy to accept that Genesis chapter one is a creation myth, and not, as some people bizarrely hold, an accurate and scientific account of the origins of life, the universe and everything. But, as with many myths, there may be truths worth exploring within them.
SWEEPING THE PLAYGROUND
Sweeping The Playground came from the show Hopes And Dreams and was a 2 hander. We converted it to a monologue for this event. Before anyone accuses me of some kind of theological inconsistency I'm absolutely happy to accept that Genesis chapter one is a creation myth, and not, as some people bizarrely hold, an accurate and scientific account of the origins of life, the universe and everything. But, as with many myths, there may be truths worth exploring within them.
SWEEPING THE PLAYGROUND
Just look at this mess, honestly, it's enough to make you weep, isn’t it? And as usual it’s down to me, the caretaker, to clear it up, though it doesn’t seem fair to me. Not that fair comes in to it. I am sweeping one corner of the greatest act of concentrated creativity ever… ever created.
I was there right at the beginning you know. “And God created the heavens and the earth.” Wallop. There I was. It caught me quite by surprise I can tell you. One moment nothing, the next instant ‘Zap!’ you’re stretching your wings and forming a choir. Quite disconcerting I can tell you.
I tried to have a word with the creator, but the Creator, he was already on to other things. He was busy creating the universe. I shouted after him, “it doesn’t have to be so big.” But did he listen? Did he buffalo. I thought to myself, anything this vast and intricate is going to be a nightmare to maintain. I’d better grab a broom.
I can’t you tell how much there is to keep clean. In this galaxy alone there are one hundred billion stars. I told him that he was going over the top. Who needs a hundred billion stars? But he didn’t stop there, oh no. There are billions of galaxies, each one as unique as a snowflake. This was creativity in abundance. A celebration of imagination.
Eventually, when he’d finished painting with broad strokes, so to speak, he got down to detail. Planets and moons and such like. I noticed he paid attention to one planet in particular. A blue green one whipped with white clouds and as beautiful as anything you’re ever likely to see. I could tell he intended this one to be special.
I pointed out to him that he was spending too much time in one place. When you’re painting on a canvas the size of the universe no one is going to appreciate the minutiae. God just smiled. A smile on the face of God is like… is like… the first day of a long holiday. Or it’s a cool breeze on a hot day. It’s like a hot drink after playing in the snow
Yes. When God smiles you know everything is going to be perfect. When God looked at planet earth he smiled.
He loved it. I could tell. He made oceans and he made the land. The oceans he filled with fish and creatures of the deep and the land he sculpted with mountains and plains and valleys. The land was lush with grasses and flowers. Forests quilted the landscape. Creatures walked, crawled and slithered everywhere.
I watched the Creator build his kingdom, though he was less like an architect and more like a child at play. There was joy in his invention.
Then when everything was perfect he reached out and took up a handful of dust from the ground which he shaped and moulded. A head, two arms, legs. Then God breathed his Spirit into the dust and man became alive.
And I thought ‘uh oh, here’s trouble.’ Later, when it had all gone pear shaped, I asked him why he had put such a creature as man into his perfect kingdom.
He showed me the universe again. The countless galaxies, the billions and trillions of stars tied up with cosmic string. Then he showed me man again, puny and imperfect man. And there, uniquely, I saw the divine spark that God had breathed into him at the moment of his creation.
Oh, and he hasn’t ruined everything. There’s still hope. Lots of it. You see the Creator doesn’t see humans as just another cog in the machinery of his universe. He sees them as part of the process of creation. They’re not here to just decorate the kingdom like pretty peacocks. (Which is fortunate really 'cos most of the ones I’ve seen couldn’t decorate a living room with a can of paint and some self-adhesive wall paper. )
My job is just to sweep up, but they can actually build the kingdom of God here on earth.
But it made me think why did God make all this for them? It’s incredible.
But then, ask yourself this, why does any father build anything, if not for his children?
Stephen Deal, 1998
Wednesday, 17 December 2008
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
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
Tuesday, 9 December 2008
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.
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.
Thursday, 4 December 2008
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!
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!
Monday, 1 December 2008
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 35th 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.
Saturday, 29 November 2008
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.
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.
Wednesday, 12 November 2008
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.
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.
Monday, 10 November 2008
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.
Tuesday, 4 November 2008
America - In Black And White
Our mini-tour took us out of Georgia and into the Carolinas and two of the most bizarre places I have ever been.
But before that, let me tell you about the show we were performing. Show is probably too strong a word for our presentation. It was meant to be informative about Rob Frost's Share Jesus organisation, giving a taste of various aspects of the ministry including the drama productions he was best known for in the UK. Rob would give an overview of Share Jesus and Polly and Kate would punctuate the talk with comedy drama sketches, written by me. I would be wheeled out to tell a few funny anecdotes about working with Rob and the church scene in Britain and all in all it was a pretty slick, fun evening. The highlight however was anything but slick. It was it's excruciating awfulness that made it so brilliant (to me anyway). Rob had brought along a young man called Matt to drive, move boxes and man the ubiquitous bookstall. Matt was, and is, a good friend, with many talents, especially in the field of evangelism. He is not, however, in any way, shape or form, an actor.
Around the time of the tour it was the 200th anniversary of Methodist founder John Wesley's conversion. At the time he wrote a now famous passage in his personal diary.
Rob, working on the assumption that Americans love all things Olde Worlde English, persuaded Matt to don a period wig and dress up as John Wesley and then recite the famous passage. I can not adequately communicate how much Matt loathed doing this. The normally articulate young man was reduced to a stammering, word muddled misery. To make matters worse, Matt was fair haired with a complexion to match. The southern sun gave him sunburn, which in combination with flaming embarrassment turned his face into a tomato red. The audiences always gave him an appreciative round of applause, though whether cause they enjoyed the virtually incomprehensible performance or out of pity for his suffering, we'll never know.
The vast majority of our performances took place in Methodist churches. There were a couple of major differences between our familiar British Methodism and Methodism in the deep south of the USA. On one occasion I was doing my bit when I looked up to see, leaning against the door jam, a huge man with a sheriff's star. If you had to cast a Hollywood caricature of a 'good ole boy' southern sheriff you need have looked no further. He wore reflective sunglasses (even though it was dusk) and had a belly hanging well over his belt. Most disconcerting of all was the enormous gun he had attached to the belt. He stood watching me and chewing gum before leaving when he decided I was neither funny nor a threat to national security. I've been in many churches in my time but have never seen anyone armed in one before. Not even in the rougher parts of south London.
The other thing you could not help but notice was the fact that in the churches we visited everyone was white. This seemed at odds with the warm, friendly and, yes, Christian people we met. As the days and churches went by I realised that if a black family had turned up at any event they would have been genuinely and warmly welcomed. I also realized that this would never happen. Coming from a multi-cultural city like London this was, to say the least, odd. I can not stress how nice people were. I presume that had we met a black family they would have been every bit as nice. But we didn't. Not once. There was no sense of segregation, only separation.
So, on to North Carolina and the mystery of Ay-uh.
But before that, let me tell you about the show we were performing. Show is probably too strong a word for our presentation. It was meant to be informative about Rob Frost's Share Jesus organisation, giving a taste of various aspects of the ministry including the drama productions he was best known for in the UK. Rob would give an overview of Share Jesus and Polly and Kate would punctuate the talk with comedy drama sketches, written by me. I would be wheeled out to tell a few funny anecdotes about working with Rob and the church scene in Britain and all in all it was a pretty slick, fun evening. The highlight however was anything but slick. It was it's excruciating awfulness that made it so brilliant (to me anyway). Rob had brought along a young man called Matt to drive, move boxes and man the ubiquitous bookstall. Matt was, and is, a good friend, with many talents, especially in the field of evangelism. He is not, however, in any way, shape or form, an actor.
Around the time of the tour it was the 200th anniversary of Methodist founder John Wesley's conversion. At the time he wrote a now famous passage in his personal diary.
“In the evening I went very unwillingly to a society in Aldergate Street, where one was reading
Luther’s preface to the Epistle to the Romans. About a quarter before nine, while he was
describing the change which God works through faith in Christ, I felt my heart strangely warmed.
I felt I did trust in Christ, Christ alone for salvation; and an assurance was given me that he had
taken away my sins, even mine, and saved me from the law of sin and death”.
Rob, working on the assumption that Americans love all things Olde Worlde English, persuaded Matt to don a period wig and dress up as John Wesley and then recite the famous passage. I can not adequately communicate how much Matt loathed doing this. The normally articulate young man was reduced to a stammering, word muddled misery. To make matters worse, Matt was fair haired with a complexion to match. The southern sun gave him sunburn, which in combination with flaming embarrassment turned his face into a tomato red. The audiences always gave him an appreciative round of applause, though whether cause they enjoyed the virtually incomprehensible performance or out of pity for his suffering, we'll never know.
The vast majority of our performances took place in Methodist churches. There were a couple of major differences between our familiar British Methodism and Methodism in the deep south of the USA. On one occasion I was doing my bit when I looked up to see, leaning against the door jam, a huge man with a sheriff's star. If you had to cast a Hollywood caricature of a 'good ole boy' southern sheriff you need have looked no further. He wore reflective sunglasses (even though it was dusk) and had a belly hanging well over his belt. Most disconcerting of all was the enormous gun he had attached to the belt. He stood watching me and chewing gum before leaving when he decided I was neither funny nor a threat to national security. I've been in many churches in my time but have never seen anyone armed in one before. Not even in the rougher parts of south London.
The other thing you could not help but notice was the fact that in the churches we visited everyone was white. This seemed at odds with the warm, friendly and, yes, Christian people we met. As the days and churches went by I realised that if a black family had turned up at any event they would have been genuinely and warmly welcomed. I also realized that this would never happen. Coming from a multi-cultural city like London this was, to say the least, odd. I can not stress how nice people were. I presume that had we met a black family they would have been every bit as nice. But we didn't. Not once. There was no sense of segregation, only separation.
So, on to North Carolina and the mystery of Ay-uh.
Monday, 3 November 2008
America - Georgia On My Mind
Continuing the story of our trip to America.
We started our mini-tour in Atlanta, alternating performing in various, mostly Methodist churches, with being tourists. We visited the Coca-Cola museum which was, let us say, tightly themed but great fun. I learned more than I thought possible about a carbonated drink. For example, I learned why Cola is ideally served in a glass full of ice. Not, as I cynically assumed, because the ice displaces the Cola thus using less of the fizzy stuff. No, it's because in the late 19th century when John Pemberton invented it as a patented medicine, refrigeration was a luxury and so ice was a status symbol. Therefore, drinking a glass of syrupy fizz that was clinking full of ice showed the world that you were well-to-do. (I've had that information rattling around for 14 years and this is the first time I've used it. Yay for blogging and the sharing of knowledge.) At the end of the World of Coke tour you got to taste umpteen Cola based drinks which would shoot across the room and fill little cups for you. I'm as fond of a soft drink as anyone but 60 different (or not so different) is about 59 too many. Matt (the wig wearing gopher), managed a sip of just about all of them.
Polly's vegetarianism continued to cause her problems. At our first gig the church had prepared a supper for us and the youth group. It consisted of loads of different types of sandwiches each and every one of them crammed full of meat. There was a tiny bit of decorative garnish on top of one pile. Polly ate it.
That night Polly and I were to stay with one of the youth workers. He was a lovely young man of about 18. A real all-American boy, Jeff was all fired up for Jesus and was an enthusiastic and generous host. He was giving up his self-contained basement bedroom in his parents house for us to use. He drove us through the Georgia countryside until we got to his parent's spacious home and were introduced to them. It was a bit odd to be honest. I was in my mid-30s at the time, about the same age as Jeff's youthful Mom and Pop. Both Polly and I felt very much as if we were Jeff's young friends, and were to be left alone to play with him downstairs.
Jeff also introduced us to his stunningly attractive, blonde girlfriend, Sloane. “Sloane?” I said. “Like the square?” With dazzlingly perfect white teeth, she smiled, blankly. “The square? What square?” “Er. . . Sloane Square. In London. There's a square in London called. . .” “London, England?” “Yes.” “I don't understand. I've never been there.” “It's where the Yuppies come from.” “Yuppies?” The cultural divide yawned wider and wider. Sloane favoured me with polite smile, less dazzling this time, and turned to Jeff. “ I'm tired, Honey. I'll see you in the morning.” She gave him a peck on the cheek and left, giving me a nervous look.
Later, when Polly and I were alone in Jeff's basement bedroom, Polly remarked how trusting his parents were, what with the gorgeous Sloane and effectively a self-contained apartment with it's own entrance, and a large, metal framed, double bed. But then, as we crawled into the bed, we discovered trust was not an issue. The slightest movement caused the bed to squeak loudly, the noise, echoing and being amplified by the concrete walls of the basement. It was probably the most effective form of intimacy deterrent, a kind of audio-contraceptive.
Polly and I spent the night almost not daring to breathe. Especially not in synch.
We started our mini-tour in Atlanta, alternating performing in various, mostly Methodist churches, with being tourists. We visited the Coca-Cola museum which was, let us say, tightly themed but great fun. I learned more than I thought possible about a carbonated drink. For example, I learned why Cola is ideally served in a glass full of ice. Not, as I cynically assumed, because the ice displaces the Cola thus using less of the fizzy stuff. No, it's because in the late 19th century when John Pemberton invented it as a patented medicine, refrigeration was a luxury and so ice was a status symbol. Therefore, drinking a glass of syrupy fizz that was clinking full of ice showed the world that you were well-to-do. (I've had that information rattling around for 14 years and this is the first time I've used it. Yay for blogging and the sharing of knowledge.) At the end of the World of Coke tour you got to taste umpteen Cola based drinks which would shoot across the room and fill little cups for you. I'm as fond of a soft drink as anyone but 60 different (or not so different) is about 59 too many. Matt (the wig wearing gopher), managed a sip of just about all of them.
Polly's vegetarianism continued to cause her problems. At our first gig the church had prepared a supper for us and the youth group. It consisted of loads of different types of sandwiches each and every one of them crammed full of meat. There was a tiny bit of decorative garnish on top of one pile. Polly ate it.
That night Polly and I were to stay with one of the youth workers. He was a lovely young man of about 18. A real all-American boy, Jeff was all fired up for Jesus and was an enthusiastic and generous host. He was giving up his self-contained basement bedroom in his parents house for us to use. He drove us through the Georgia countryside until we got to his parent's spacious home and were introduced to them. It was a bit odd to be honest. I was in my mid-30s at the time, about the same age as Jeff's youthful Mom and Pop. Both Polly and I felt very much as if we were Jeff's young friends, and were to be left alone to play with him downstairs.
Jeff also introduced us to his stunningly attractive, blonde girlfriend, Sloane. “Sloane?” I said. “Like the square?” With dazzlingly perfect white teeth, she smiled, blankly. “The square? What square?” “Er. . . Sloane Square. In London. There's a square in London called. . .” “London, England?” “Yes.” “I don't understand. I've never been there.” “It's where the Yuppies come from.” “Yuppies?” The cultural divide yawned wider and wider. Sloane favoured me with polite smile, less dazzling this time, and turned to Jeff. “ I'm tired, Honey. I'll see you in the morning.” She gave him a peck on the cheek and left, giving me a nervous look.
Later, when Polly and I were alone in Jeff's basement bedroom, Polly remarked how trusting his parents were, what with the gorgeous Sloane and effectively a self-contained apartment with it's own entrance, and a large, metal framed, double bed. But then, as we crawled into the bed, we discovered trust was not an issue. The slightest movement caused the bed to squeak loudly, the noise, echoing and being amplified by the concrete walls of the basement. It was probably the most effective form of intimacy deterrent, a kind of audio-contraceptive.
Polly and I spent the night almost not daring to breathe. Especially not in synch.
Thursday, 2 October 2008
Is There A Clown Doctor In The House?
A few months a go we were watching one of those regional programmes that are usually about cleaning up the local canal or restoring an old theatre or such like. This one was about a group of people who go in to hospitals to visit children and help them come to terms with their conditions, or help explain the procedures they will be going through. They are known as Clown Doctors and use humour, magic and sometimes just plain silliness to to help relax and comfort the children. It turned out these Clown Doctors weren't just a bunch of annoying would be children's entertainers in wigs and red noses but were trained in all manner of things from psychology and infection control to close-up magic and balloon modelling. Personally the idea of someone coming up to my sick bed and asking me to 'pick a card, any card' would make me reach for the pain relief, but I'm not four years old and facing months of chemo.
I turned to remark to Polly something facile about rather having morphine than laughter as my preferred best medicine when I noticed a smile on her face and a far away look in her eyes. “I could do that,” she said. And truth be told I knew she could.
A few weeks later, after an exchange of phone calls and emails, an application form arrived. I say application form but I mean a demand for an autobiography combined with a dissertation on the philosophy of child care. I swear it would be easier for an ex-junkie, militant communist to join MI5 than for a experienced children's entertainer and nursery nurse to become a clown doctor. I know I'm biased but with more than 15 years experience as a story-teller, professional qualifications and real life experience as a nursery nurse both here and abroad, and years of earning a living as a jobbing actor (playing countless parts as cute woodland animals and fairytale creatures) there is no one in the whole country more qualified than Polly for a job like this. She spent hours and hours filling in the form and then dropped in the post.
As you might imagine, following the TV programme, the Clown Doctor people had been swamped with requests for application forms from would be balloon modellers and wig wearing circus wanna-bees. In the end some 375 people actually made it through the form filling and of those a handful were invited to a workshop. Polly was among them. After a morning of finding her inner clown and evolving from the primeval swamp into a dinosaur she was called back for an interview which is where we were up to today.
This morning Polly made her way back to Angel Islington for the interview. There were only six trainee places vacant so I did the “You've done really well to get this far” speech. Later, I received a phone call from her telling me how she had gone mad and been unable to stop talking. “I was surreal even by my standards,” she groaned, “At one stage I was telling them about ready rolled pastry already cut in to circles.” “Why?” I asked. “I don't know,” she wailed. “But after it was over one of the panel asked me where she could get some. Is that a good sign?”
Apparently it was. This afternoon they rang to give her the job though whether for her acting and entertainment skills than for her particular knowledge of frozen patisserie we'll probably never know. Next month she starts a process of training that will last two years. That's an awful lot balloon animals.
I turned to remark to Polly something facile about rather having morphine than laughter as my preferred best medicine when I noticed a smile on her face and a far away look in her eyes. “I could do that,” she said. And truth be told I knew she could.
A few weeks later, after an exchange of phone calls and emails, an application form arrived. I say application form but I mean a demand for an autobiography combined with a dissertation on the philosophy of child care. I swear it would be easier for an ex-junkie, militant communist to join MI5 than for a experienced children's entertainer and nursery nurse to become a clown doctor. I know I'm biased but with more than 15 years experience as a story-teller, professional qualifications and real life experience as a nursery nurse both here and abroad, and years of earning a living as a jobbing actor (playing countless parts as cute woodland animals and fairytale creatures) there is no one in the whole country more qualified than Polly for a job like this. She spent hours and hours filling in the form and then dropped in the post.
As you might imagine, following the TV programme, the Clown Doctor people had been swamped with requests for application forms from would be balloon modellers and wig wearing circus wanna-bees. In the end some 375 people actually made it through the form filling and of those a handful were invited to a workshop. Polly was among them. After a morning of finding her inner clown and evolving from the primeval swamp into a dinosaur she was called back for an interview which is where we were up to today.
This morning Polly made her way back to Angel Islington for the interview. There were only six trainee places vacant so I did the “You've done really well to get this far” speech. Later, I received a phone call from her telling me how she had gone mad and been unable to stop talking. “I was surreal even by my standards,” she groaned, “At one stage I was telling them about ready rolled pastry already cut in to circles.” “Why?” I asked. “I don't know,” she wailed. “But after it was over one of the panel asked me where she could get some. Is that a good sign?”
Apparently it was. This afternoon they rang to give her the job though whether for her acting and entertainment skills than for her particular knowledge of frozen patisserie we'll probably never know. Next month she starts a process of training that will last two years. That's an awful lot balloon animals.
Wednesday, 3 September 2008
Some Things Awfully Nice
It’s been a long week and once again I’m sorry for the lack of recent posts. On Saturday we had a 40th birthday picnic in the local park for a friend of Polly. And then on Sunday we had another party, this time for Aunt Megan who was 70 this week.
Megan’s party took place at my brother’s house in Southfields, south London, one of those terraced houses that cost £800 originally but now sells for £450,000 give or take a Victorian fireplace surround or two. The house has a split-level ground floor with a lovely kitchen/diner down a flight of steps. Being a loving brother with two wheelchair bound siblings he has spent a small fortune designing and having made a portable ramp that can cope with the dogleg on the way down.
The party was a great event and friends and family turned out to celebrate. Polly had made a birthday cake made out of 70 chocolate and lemon cup cakes, beautifully presented on a three-tier cake stand decorated with flowers. There was an extensive buffet and plenty of wine and champagne. I enjoyed myself immensely and the boys were thrilled to be loaned digital cameras and asked to be official photographers.
The Cake (photo by 4 yr old S)
Every now and again something unusually nice and surprising happens. On Monday we took the boys to Legoland, Winsor. (No that’s not the nice and surprising thing – we usually go at least once during the summer.) The boys love Legoland and I prefer it to most of the other theme parks in the southeast because the rides appeal particularly to the under 12s. It is however very busy and expensive during peak times such as school holidays and Scrooge like as I am, I begrudge paying the exorbitant entry fees and then spending most of the day queuing 45 minutes at a time for a chance to watch Polly and the boys whiz around a track on a plastic brick-built dragon for 90 seconds. But still, it was the last week of their holiday and they had been good all summer and… well and, sometimes you get pleasure from seeing your children’s excitement and delight at a surprise treat.
We arrived to find cars queuing the entire length of the access road and realised that the park would be extremely busy today. We were aiming to meet up with a friend and her children at midday which seemed an increasingly unlikely happening. Fortunately Legoland has a substantial disabled car parking area. Unfortunately the substantial disabled car parking area was full. We circled the car park several times while I glared at people who seemed to leap from their cars and do handstands and cartwheels before remembering to limp slightly towards the park entrance. (Okay, perhaps I'm being uncharitable but could all those people really be disabled?) Eventually we pulled up behind a car from which a wheelchair was being unloaded. We weren't in a designated parking bay but since at least 50 other cars weren't either we decided to risk it. I took the boys to stand in the entry queue while Polly started chatting to the people unloading their wheelchair, making sure our van wasn't blocking them in any way.
The boys and I joined one of the seven or so lengthy queues to get into the park. It was already 12 o'clock and I was about to reach for my phone to call Anna and say we would be late meeting up with her when I looked up to see her standing one place ahead of us in the same queue. Once we'd had the “What are the odds on that happening” conversation she explained that they were parked in an over-overflow car park so distant she felt it was probably in another county. At that moment Polly arrived grinning like a Cheshire cat and clutching something in her hand.
At full price it costs a fortune to get in to Legoland. A family of 4, 2 children and 2 adults would set you back £122 ($240). Fortunately you can usually pick up a voucher from a magazine or supermarket product that will enable one child to go free. Also, with a proven disabled type person a registered carer can go for free. This brings the price down for our family to a little more reasonable £61 ($120).
Polly gleefully held up 4 shiny yellow tickets. “Look what I've got! Those people in the car in front of us when we parked gave them to me.” “Why?” I asked not unreasonably and with my innate suspicion of 'free' gifts. It turned out that Polly, who can make life long friends with people whilst waiting to cross the road, had been chatting to these nice people about wheelchairs and parking and what have you. In the course of the conversation she offered them a discount voucher she had spare, but the family declined explaining that they were staying at a hotel on an all inclusive deal where as part of the package they'd been given an extra days set of tickets that they couldn't use because they had to travel home tomorrow. Then in a spirit of 'wheelchair users united' they gave Polly the spare tickets. “Here”, they said, “have an ice cream on us.”
We had a lovely time, with the children going on rides, building things and watching shows. The weather was lovely and even the queuing didn't stress me out because we weren't wasting our hard earned pennies on having paid to be there. Result.
So, if you are one of the very nice family who gave us your extra tickets in the overcrowded disabled car park at Legoland on Monday then thank you very much. I hope your random act of kindness is returned to you 10 fold.
Sunday, 6 July 2008
You Are Not Taking Your Disability Seriously lf. . .
You have go-faster stripes on your wheelchair.
You use the battery on your electric wheelchair to power a refrigerator for your beer.
You hire out your wheelchair at the school fair for 50p a ride.
You use your artificial leg as a wine-cooler.
You fit monster truck tyres to your wheelchair.
You install an air horn on your wheelchair.
Your walking frame has runner-beans growing up it.
You have an attachment on your chair especially to hang fluffy dice from.
You go in to chemists and ask if they have a pill to cure you.
You paint pictures with your feet even though your hands work perfectly well.
You go in to shops and ask able-bodied people if they need any help.
You use the ceiling track hoist in your bathroom as a swing.
If you can do better then email me or leave a comment.
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?”
Subscribe to:
Posts (Atom)