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Diary: deciding a valuable life

week in the life

Diary: deciding a valuable life Simon Jarrett

I recently watched a clip of actress Sarah Gordy accepting an honorary degree at the University of Nottingham. Gordy (Downton Abbey, Call the Midwife) has Down’s syndrome – she has appeared in this magazine.

In her speech, she spoke about the many people who wrote her off when she was born – she would not be able to walk or talk and so on. She then reeled off a list of achievements in TV, theatre and dance, and mentioned a speech she gave at the United Nations. If she had listened to the doubters, she said, she would never have done any of these things.

I saw this shortly after reading Should the Baby Live? The Problem of Handicapped Infants by Peter Singer, a philosopher of ethics.

Singer argues, using two case studies, that ‘severely handicapped infants’ should have their prospects considered by expert panels in consultation with their parents. If the panel predicts the child will live a life of pain and suffering, then he or she should be subject to legalised euthanasia.

Both of the children in his real-life case studies had Down’s syndrome, like Gordy.

I suspect she has given a little more to the world she was born into than Peter Singer ever has – how strange that he feels that people like him should have the right to curtail her life.

Food for thought

Visiting relatives in Alresford in Hampshire, I came across something intriguing. By the river Arle, a young woman called Amy, who has complex learning disabilities, has set up a duck feeding station with her father. For a small deposit into an honesty box, you can buy a bag of duck food. Every day, Amy and her father replenish the stocks and collect the takings.

It struck me how much goes into this – a dedicated family, daily food preparation, buying materials and making daily trips.

The result is a young woman making a valued contribution to her community (including the ducks – special feed is more nutritious and less harmful than bread). It costs the state not a penny.

Commissioners take note – small investments into ideas like this change lives and can keep assessment and treatment centres empty.

Grumpy and happy

One of the people who rounds up and restacks the trolleys at our supermarket is a man with a learning disability.

As well as being good at what he does, he is very grumpy. Over the years, I have smiled at him, only to be greeted with a scowl or utter indifference.

Recently, I asked myself why I smile at him – I don’t smile at the other trolley stackers. I was forced to admit I probably do it so that I can signal to him I am ‘OK’ with people with learning disabilities.

He doesn’t give a damn what I think. I’ve stopped smiling at him and I think we’re both a tiny bit happier as a result.

Theatre of dreams

On a visit to the former Normansfield Hospital in London, I saw the magnificent 19th-century theatre built by John Langdon Down so ‘inmates’ could perform and watch as if they were at a real theatre.

This was a humane idea – but all I could think about were the efforts made to keep people with learning disabilities separate from the society the rest of us inhabit.

Simon Jarrett is the editor of Community Living

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