Friday, February 27, 2009

today : 2 deaths reported

The Irish writer Christopher Nolan died the other day. It kind of slipped by un-noticed, what with the Oscars and the "Satago Glacialum" and everything. He was always someone I was aware of, partly because he was roughly my age. His first novel, Under The Eye of the Clock came out when he was still a teenager and I was pretty envious, given that I was ( and still am) an aspiring novelist. I remember thinking that it read like a teenager's novel when I read it. I don't think I read anything else he wrote.

Nolan was remarkable and initially famous because of his Cerebral Palsy and was sold as the new Christy Brown. Both were Irish, writers, and both severely disabled. Both died pretty young and, oddly both choked to death. Nolan was 43.

And then we learned of the early death of another Cerebral Palsy sufferer : the 6 year old son of David Cameron.
On an early news report, the correspondent bluffed and sputtered his way through information about the condition, giving a mixture of false, heresay and true but vague information.

It's about time that people understood more about the three main conditions that affect so many people, CB, Autism and Down Syndrome. All are pretty common, yet I bet if you asked most people to delineate them they would struggle. I certainly know this is the case in the education system, as there is a scandalous lack of knowledge and training for teachers and educators, whilst at the same time a policy that seeks to maintain affected students in mainstream education. I've talked to Special Needs Co-ordinators who were vague on the details. I've also taught many people who are perhaps mildly affected, but undiagnosed. The lack of diagnostic mechanisms accessible through schools was a constant frustration.

I once attended a training session on Autism where the person delivering the information gave no information, bluffed his way through questions and referred everything back to one student they knew many years ago. I left the room angry, because there were people in the room who were genuinely interested to learn things they didn't know and they, and their potential charges, were let down.

One of the problems, I think, about these broad types of disability is their very breadth. Each condition possesses a huge range of ability and disability, each is highly personal to the person living with them, and each is complex to understand and deal with. They are just not as easy to name and box as people would like.

I hope the legacy of Ivan Cameron is that his father's politician colleagues finally begin to address society's unwillingness to learn about and engage with the issues of disability, so that children and carers can feel themselves understood more than they do now.

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