Tuesday, October 02, 2007

Simon Hilyer

Derek Hilyer's tribute to his brother was published in today's Guardian. Had I read it a few years ago I might have found it a touch sentimental. Now we have little ones in our life to which such words could easily one day apply.

My brother Simon, who has died aged 51, never learned to speak or understand very much, or to perform simple tasks. He lived most of his life in a hospital for people with learning disabilities. Then, two years ago, he moved to a house in Derby, which he shared with two other people, supported by the Turning Point trust.

Yet he lived with an intensity that would have exhausted any of us - and it quite often did. When he was distressed, he would lash out from frustration and failure to communicate; when he was unhappy, he would look at you with eyes full of misery, hurt and betrayal - and he could not explain why he was sad. But when he was jolly, he would show complete interest in what was going on, supervising the cooking, interrogating his carers with a penetrating, intelligent gaze. And in the calmer surroundings of his own home, he had times of pure joy. He had the ability to pass his delight in living straight to anyone he was with.

Simon was born in Cheshire, the son of my cousin John. He was adopted by my parents when his mother Beatrice died, but as his behaviour became more challenging he went to live at Aston Hall hospital, Derbyshire. It is sad that my parents did not live to see him benefit from the changes in attitudes, where drugs are used to help rather than to control, and with emphasis increasingly being placed on supporting people to make decisions for themselves, to lead, as far as possible, their own lives.

Simon relied on staff at the hospital, and his home, caring for him. And he needed and received help from many others - people in shops, pubs, holiday centres and restaurants - who happily accepted him and his two companions, together with social and medical workers.

When people die, it is often asked: what did he do? What was he? How did he spend his time? The answer could be: he did nothing, his life was pointless, he was someone to be pitied. But the 50-odd people at his funeral knew that was nonsense. Simon, as we hope one day it will be said of us, lived a full, rewarding and thoroughly worthwhile life.

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