I’m not saying I’ve won the summer holidays, but, well, I am, I am saying I’ve won the summer holidays. On the first day.
Admittedly, I may be crowing a little early. After all, there are 40 days to go. Yes, I may possibly be counting.
So just how did I come to be temporarily wearing the Tour De Vacances’s Maillot Jaune? It’s simple: it was down to a giant metal man, a teenage girl with an infectious giggle, and a woman who is making a sacrifice beyond comprehension.
The 16ft tall silver fellow was the star of a brilliant outdoor theatre show I took the kids to today: Graeae Theatre’s adaptation of Ted Hughes’ ‘The Iron Man’. We sat on our picnic rugs in the glorious sunshine in a lakeside park, and watched as with the aid of pedals, pulleys, wheelchair power, and imagination, the clanking, charming giant was brought to life.
[Graeae Theatre is an amazing company, by the way. Their aim is to provide a platform for the talents of deaf and disabled actors and musicians (which they did to brilliant effect with the London Paralympics opening ceremony, which was co-produced by Graeae’s artistic director and included a riotous and rousing version of Ian Dury’s Spasticus Autisticus from their theatre show Reasons To Be Cheerful). Graeae take their productions out into communities and perform great spectacles that just happen to make the idea of a lad in a wheelchair operating a giant robot, and a deaf chap getting a crowd to learn the sign for ‘Spacebat’, normal, entrancing, and fun. As a consequence of today’s entertainment, if just one of the kids watching in pyromaniac awe when some Real Fire was used in the production thinks twice in the future about patronising, teasing, or ignoring someone with a disability, then Graeae's work here was worth it. (Yes, of course, my boy was one of the pocket-sized flame-worshippers, and no, League Of Gentlemen fans, Graeae are absolutely NOTHING like Legs Akimbo)].
The teenage girl was my daughter’s PWSBFF (Prader-Willi Syndrome Best Friend Forever - come on, you should know this by now). I did what I usually do when they get together: watch them watching. There’s something amazing about these two teenagers; these unique, rare, unusual, idiosyncratic, original, out of the ordinary girls. Who despite being unique, rare, unusual, idiosyncratic, original, and out of the ordinary - or perhaps because of it - are like peas in pod. An odd pod. But our pod.
“And what about the woman making the sacrifice?”, I hear you ask, or perhaps I don’t, because I mentioned that ages ago before I Led Zepped this post and rambled on.
Well, that’s PWSBFF’s mum, who took both girls home for a sleepover, and, more importantly, is taking them to see the film Pudsey tomorrow morning. You know, the one starring the dancing dog that won Britain’s Got Talent (no, me neither). All I know about it is that it is supposed to be truly, monumentally, mind-bogglingly awful.
And I DON’T HAVE TO GO. Like I said, I've won. Well, peaked, at least. ______
Click on link for today's song: The Primevals - Hit The Peaks
Graeae's The Iron Man production is part of the International Festival Milton Keynes, which continues until Sunday. There are two more free performances on Friday July 25. Graeae is a dangerous name, you know. Try and write it down: you'll be lost in A & E before you know it. Thangyouverymuch, try the veal, I'm here all week.
Orbital and the Graeae Theatre Company (made up of actors and musicians with various disabilities) performed a version of Ian Dury’s Spasticus Autisticus at the Paralympic Opening Ceremony last night. It featured excerpts of a Brief History Of Time read by Professor Stephen Hawking's voice (who was there in person and donned a pair of Orbital ‘torch’ glasses).
It was amazing, especially when you think how controversial the song, originally written in 1981 for the International Year Of The Disabled, has been: deemed by many to be “too offensive”* (*translation: too in-your-face, defiant, and uncomfortable).
Also in the stadium was a giant Mark Quinn statue of the disabled artist Alison Lapper.
Earlier, the GB team had tucked their ATOS sponsored lanyards into their tracksuits as a pointed protest at the company which is currently carrying out the Government’s widely-lambasted disability assessments that have caused misery and pain to so many disabled families.
Britain’s first Paralympic gold medal winner, 84-year-old Margaret Maughan, lit the petals of Thomas Heatherwick's stunning Olympic cauldron from her wheelchair.
At its peak, Channel 4's coverage of the ceremony attracted 10.9 million viewers.
My daughter, who has a rare chromosome disorder called Prader-Willi Syndrome, was just too tired to stay up, but the whole shebang is recorded, and today we’re going to watch it together.
Then next week, thanks to us lucking out in the prize draw at her special school sports day, we're going to the Olympic Stadium to watch the athletics.
Tonight's ceremony made me more proud than ever to be the mum of a disabled child. It made me proud to stick two fingers up to any idiot who thinks she’s somehow ‘less’ than anyone else.
As Stephen Hawking said tonight: "There is no such thing as a standard or run-of-the-mill human."
“Hello to you out there in Normal Land You may not comprehend my tale or understand As I crawl past your window give me lucky looks You can read my body but you'll never read my books I'm spasticus, I'm spasticus I'm spasticus autisticus"
EDIT: Video of the track that stopped me in my tracks (now up on You Tube). If you want to check out the Ian Dury & The Blockheads' original, click on my previous blog postRipples.
The children in my little street aren’t the the most genetically perfect bunch you’ll ever meet.
There’s my daughter, with her rare chromosome disorder, Josh next door (see my last post, Legs), an autistic girl across the road, and another girl who used to go past on her way to school every day struggling up the hill with a walking frame.
My husband thinks this is an unusually high proportion of young people with disabilities. (We don't live in Springfield, by the way. There isn’t a poorly-maintained nuclear reactor nearby, with a lake filled with three-eyed fish). I think the cause of all this comes under the heading: “Sh*t happens”.
“We should change the street name to Raspberry Ripple Close,” my husband decided.
As the father of a girl with a disability, he can not only get away with this, but I’m also allowed to giggle at it. It’s all about intent and context and laughing at the bad stuff to take away its power and hold over you.
If Ian Dury was still around, you could ask him a thing or two about this.
The 16ft tall silver fellow was the star of a brilliant outdoor theatre show I took the kids to today: Graeae Theatre’s adaptation of Ted Hughes’ ‘The Iron Man’. We sat on our picnic rugs in the glorious sunshine in a lakeside park, and watched as with the aid of pedals, pulleys, wheelchair power, and imagination, the clanking, charming giant was brought to life.
