Shelbie William Born To Be Different Essay
Last year’s wide-ranging Paralympics programming on Channel 4 gave disability an unusually high profile on television. Still, considering some 70,000 children are born with a disability in the UK every year, and few things can have a more profound effect on family life, the subject gets relatively little coverage. One notable exception is Born to Be Different (Channel 4), which, since the turn of the millennium, has been documenting the family lives of six children with disabilities, sending bulletins on their progress every couple of years.
“I feel abandoned by the system,” said Paula Davis at a particularly low moment in last night’s return visit. The mother of 12-year-old William, who was born with tubercular sclerosis (leading to complex epilepsy and autism), had just learnt that her local council in Suffolk had refused to fund his enrolment in a specialist residential school. This despite Paula having recently developed MS, and William being prone to violent outbursts, many directed at his younger sister Jess.
“I’d like them to spend 24 hours with him before they made that decision,” she said in a rare moment of bitterness. The 10 minutes or so we spent with them made it easy to sympathise (and celebrate when the funding eventually come through on appeal). Over in Bristol, 12-year-old Shelbie Williams’s parents Vicky and Nick were being put through the wringer yet again as their daughter struggled against another life-threatening illness in intensive care. “You get everyone saying to you, don’t forget she fought it last time,’ said Vicky. “But she can’t fight it every time, and it doesn’t leave you any less worried each time it happens.”
This is a series that packs an enormous punch of humanity into an hour and generally shows our health and welfare services in a stark but fair light – revealing the huge effort that goes into providing support. Far from being voyeuristic, exploitative, miserabilist or even campaigning in tone, realism is the one and only note. And now that the children are approaching adolescence, for some there’s a shift away from the parents’ perspective towards seeing life, and disability, through their eyes.
For example, in New Zealand, 13-year-old Hamish MacLean, was leading the typically sporty outdoor life his parents had moved there to let him to enjoy – and he certainly wasn’t letting dwarfism limit his horizons. Last time around, aged 11, we’d seen him become an accomplished skier; now he was smashing all sorts of national records in the swimming pool, his sights set confidently on the next Paralympics.
“I want to go to Rio,” he declared. “Just to qualify, which would be cool. But it would be great if I got a medal.” For anyone doubting the legacy of London 2012, this was it.
Из самолета? - повторила. - Что происходит. С какой стати университетский профессор… Это не университетские дела.