Saturday, 17 August 2013

Learning from Eddie

I've commented before on the tender love that longstanding sports  hack and natural world lover, Simon Barnes, has for his Down's syndrome son Eddie. He doesn't mention him often, but a lovely piece in todays Times caught my eye,

Shocking news -- an addition to the half-century of family traditions of Cornish holidays. Eddie, my younger son, has taken to walking.
This being Eddie, it is a fiercely individual take on the concept, one that resembles normal ideas of walking as much as our rambling games of garden cricket resemble the game they play at Lord's.
I'm not sure how much of this is Down's syndrome and how much the singularities of his own nature, but it's a great thing in every way.
Physical exercise is hard for him because of the lax muscles of his condition but the pleasures of a stroll in dramatic circumstances have come to him at the age of 12. We set off most mornings with his grandfather's dog Bessie and take a walk to a spot that's as dramatic as anywhere on the British coast. It's a good half-mile away, a damn good effort.
But once there, seated on our rock, looking out over a slope of heather and gorse that hits the Atlantic with a bravura burst of granite, we take our time. A good long sit, with Eddie and I both using binoculars to see what the world has brought us this morning.
A stare out to sea usually produces a gannet or two: "Got 'im!" Eddie says, and sometimes he actually has. Staring a mile or so out, I also found Manx shearwater a couple of times, dipping decisively seawards. There was sometimes a wail of kittiwake. Above our heads the gronk of ravens, passing overhead, one always followed by the other. "Got 'im!"
I still experience this cultural ambivalence when reading about disability. On the one hand our culture increasingly idealises disability and disability rights, whilst on the other, assumes and affirms the basic human 'right' of abortion on demand and antenatal screening tests to 'eliminate' disability. I certainly don't underestimate the challenges of bringing up a disabled child, but oh for some honesty in the debate.

Barnes ends with a touching note on what disabled children enable us to see. Speaking of Cornwall,
This place with its strong views has affected Eddie very deeply. Once installed on the rock with the cliff's inhabitants going about their daily duty, he's been happy to stay there for an hour or more, sometimes eagerly watching, sometimes slipping into a reverie, at other times engaging me in the complex system of Jokes that keep us going. Walking at Eddie-pace brings revelations denied to the hurrying walkers who pass us intent on their destination.

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