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Features

I know that Richard Dawkins is wrong about Down’s syndrome, because I know my son

Eddie is capable of living a fulfilling life, and if he’s a luxury society can’t afford then that’s not a society I want to live in

6 September 2014

9:00 AM

6 September 2014

9:00 AM

No household that contains a 13-year-old boy is eternally tranquil. There had been a bit of temperament that evening, an outright refusal to go to bed, hard words for his mother and his father, and trickiest of all, an attitude that seemed to deny not only our parenthood but our humanity.

Then the dam broke, and that was better but more exhausting. Still, at last he was in bed and at peace and the world was easy again. So I poured drinks for us both and raised my glass: ‘Dawkins was right,’ I said. And my wife laughed and agreed. Thank God for jokes, eh? What would life be without ’em? So thanks to Richard Dawkins for bringing us a new one; it won’t be the last time we use it.

Because Eddie has Down’s syndrome, you see, and that’s not always easy. Of course, there are thousands of other occasions when things are quite different. I could tell you about the grass snake Eddie and I found swimming in the river as we were paddling our canoe or the banana bread we make or the walks we took on holiday in Cornwall, when we found clouded yellow butterflies every day.

I put all that in for balance — well, not exactly balance, for the good outweighs the bad as an elephant outweighs a feather — but I can’t put such stuff to Dawkins. It’s emotional, you see, not logical: ‘one of a common family of errors’. The banana bread argument is not valid in Dawkinsian terms.

OK — recap: Dawkins told a woman on Twitter that if she was knowingly pregnant with a Down’s syndrome foetus she should ‘Abort it and try again. It would be immoral to bring it into the world if you have a choice.’

Strong word, immoral. There are, as I see it, two possible arguments for using it here, though there’s also a sort of Venn diagram overlap which I’ll leave for third. The first argument is that people with Down’s syndrome cost too much from the public purse: that it’s immoral to give birth to a child that would be a drain on national resources.

Which is a hard-nosed notion, and if it were followed through logically, as Dawkins insists an argument should be, then we need to do something about old people, about all people with serious illnesses, about all low achievers. But even by this argument, people with Down’s syndrome are just part of the crowd of drainers: why pick on them?

In his damage-limitation stuff, Dawkins was inclined to stress the second argument: that it would be ‘immoral from the point of view of the child’s own welfare’. In other words, a foetus with Down’s syndrome is better off unborn. Logical inference: a person with Down’s syndrome is better off dead. Dawkins doesn’t know what it’s like to be dead, and he doesn’t know what it’s like to have Down’s syndrome, so I’m not convinced he has a valid argument here.

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What I can say without a shadow of a doubt is that Eddie gets a kick out of life. Down’s syndrome people are almost notorious for amiability: ‘They’re very loving, aren’t they?’ people have often informed us, unwittingly supplying another of those helpful jokes. All the same, Eddie’s days are lit up by reciprocal affection.

He also loves a challenge, to work at it and succeed. He has worked so hard on his speech that even his grandfather, 85 and pretty deaf, can keep up with him in conversation, to the immense gratification of both. Eddie’s not going to write The Blind Watchmaker, but he writes poems about his life. He loves David Attenborough and Harry Potter. He likes birding with me and can identify all the common species; he likes garden cricket and, above all, being with the horses: and here he is confident and responsible. ‘Don’t forget the pony’s water,’ he tells me.

I hope when he’s older he can find protected employment involving animals. I know — through coincidence rather than any Down’s network — two adults with Down’s syndrome, both of whom live happy, eventful, fulfilled and reasonably independent lives. In other words, the argument that giving birth to a child with Down’s syndrome is immoral from the point of view of the individual’s welfare is a non-starter — an absurd example to choose, in fact. Many other conditions are infinitely harder for the sufferer.

So let us move on to the third of the two possible arguments, the one that comes between ‘Can a person with Down’s syndrome be happy?’ and ‘Can we afford people with Down’s syndrome?’ Let’s ask, ‘What have people with Down’s syndrome ever done for us?’

I am afraid that this bit is going to be ever so slightly non-quantifiable, so perhaps it’s unacceptable to a person who judges everything with ruthless scientific rigour. Though that does pose the question of whether ruthless scientific rigour is the only valid way to look at the world.

Eddie brings joy to his family. He is cherished for his vulnerability and for his humour and affection, gifts that burst the banks of kin and spread into the wider world. Eddie means a great deal to many friends and acquaintances. The terminally ill find solace and meaning in his uninhibited nature. He and his aunt sang Elvis on her deathbed: ‘Love Me Tender’ was rocking across the hospice. Not everybody can do that.

Those who come into contact with Eddie more casually tend to walk away a tiny bit enriched by the encounter, moved by a combination of their own pity and Eddie’s complete lack of reciprocal self-pity. His desire to help and his willingness to banter make many people’s days fractionally better.

At his primary school, his head teacher told us: ‘This is a better school because of Eddie. He makes people kinder and more caring.’ The school offers an annual Peace Prize, decided by the pupils, for the child who has done most for the happiness of the school. One year they gave it to Eddie, not least because it was his unvarying practice to help anyone who had an accident in the playground.

This will continue into adult life: Eddie will make people more generous, make them behave better towards other people with problems, make them think about such people in a better way. He will make people fractionally gentler and fractionally kinder. That doesn’t seem to me a negligible contribution to society; many people do less.

To sum up: (1) if Eddie is a luxury society can’t afford then (a) so are an awful lot of others and (b) that doesn’t sound like a society I’d care to live in; (2) Eddie is capable of leading a fulfilling life; and (3) Eddie is ultimately a giver and not a drainer.

It is dismaying, then, that a scientist and writer of brilliance — a great admiration of mine, as it happens — has given the world licence to conclude that my son’s existence is less valid than everybody else’s. And no, don’t blame the headline writers: a big-name writer with moral authority has a responsibility not to go off half-cocked. You shouldn’t risk being misunderstood on big subjects.

Dawkins’s website contains a vigorous pseudonymous defence of Dawkins on Down’s. It’s written in duh! duh! logic designed to make even us stupid people grasp the subtleties of Dawkins’s argument, and makes clear that this argument stands or falls on the question of whether or not people with Down’s syndrome live in perpetual hell. And they do nothing of the kind.

Dawkins’s argument is based on an error. He hasn’t researched Down’s syndrome, he just assumed that people with the condition live in constant suffering. It’s a shame that Dawkins wasted his title The God Delusion for his fundamentalist tract. He should have saved it for his autobiography.

But never mind him: it’s Eddie that matters here. Dawkins implies that both society and Eddie would be better if Eddie did not exist: not just Eddie but everyone else with Down’s syndrome. I disagree. So — sorry and all that — we’re going to have to face up to the gritty reality of society. If we distil every-thing that matters down to its last brutal reductionist essence, what are we left with? Eddie’s job in this world is to love and to be loved. Isn’t every-one’s? Or is love just another meme?

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