Duchenne and a life worth living

Jon is – as he puts it – pretty much trapped inside his own body. This genetic disease lays waste to muscles over time. Still just 31, he is in the final stages and can really only move his fingers and head.

“I can’t even scratch my own nose if I want to”, he told me.

He needs assistance round-the-clock, can now only eat pureed food, needs to use a ventilator to help his breathing for about 16 hours a day and is hoisted in and out of bed.

But Jon Hastie lives independently in his own flat. He’s in paid work. And now he’s made a film, called A Life Worth Living (see clip below).

It is a road movie in which Jon heads off to meet six other men with Duchenne who he thinks are living remarkable lives; among them are a music promoter, a graphic designer and a novelist. Jon’s message for us all is to live a full life, to make the most of what we’ve got.

Living with Duchenne isn’t easy, but you don’t have to sit around waiting for death. Jon Hastie

Jon was diagnosed when he was three when doctors told his parents he would die in his teens. He is still here and not the oldest Duchenne survivor. In the film he meets a man in his 40s. Jon says if he’d known he might live into middle age, he’d have lived his life differently – though perhaps this man with a degree, a masters and a PhD is just being modest.

“Living with Duchenne isn’t easy, but you don’t have to sit around waiting for death.”, he says.

For Jon, the hardest part of the film was meeting a family whose six-year old son Jacob had recently been diagnosed. “It’s devastating for parents”, he says. But his parents always pushed him, even when others did not. There were teachers, he told me, who gave him a bit of slack as a schoolboy, assuming he wouldn’t need much of an education as he wouldn’t be around. But his parents soon made sure those teachers changed their attitudes.

And with his film, Jon hopes to change attitudes to disability and what can be achieved by us all.

No Go Britain: tweet your day
We’re putting together a snapshot of public transport use by disabled people in Britain – on one day. Tomorrow, Wedneday 4 April, around 100 people will be live-tweeting their journeys for No Go Britain. Do you want to take part? Follow Twitter @nogobritain where you’ll find all the instructions.