I am writing this paragraph on the morning of Eddie Barnes’ 20th birthday. He will shortly be having the third party of the weekend, with a third cake and the third singing of ‘Happy Birthday’. It’s a pity we didn’t invite Richard Dawkins.
“No, no, I’m sorry, but I’m afraid you can’t sing this, because Eddie has Down’s syndrome and it’s a well-known fact that Down’s syndrome reduces the world’s sum of happiness. You’re singing this song in the mistaken belief that it’s possible for a person like Eddie to experience happiness and share happiness and spread happiness, but I can tell you for a fact that such a thing is impossible.
Pain and misery to you.
Pain and misery to you…”
But, alas, Dawkins was not there to have a slice of cake and share the usual outpouring of love and jollity that accompanies such occasions in any family. Instead, he is in the position of the brilliant philosopher telling us that the table at which we are sitting does not exist.
Dawkins has a thing about Down’s syndrome. A few years ago, he offered advice to any women pregnant with a child diagnosed with Down’s. “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”
Immoral? Powerful stuff. More recently, in an interview on RTE radio with Brendan O’Connor (who has a daughter with Down’s), he backtracked ever so slightly, accepting that his previous statement was “a bit strong,” but added: “given that the amount of suffering in the world probably does not go down – probably does go up – compared to having another child who doesn’t have Down’s syndrome.”
This is not the neatly turned prose we have come to expect from the author of The Selfish Gene and The Blind Watchmaker, but Dawkins is still saying unequivocally enough that the world would be a happier place without people who have Down’s syndrome.
I wonder: how many people with Down’s syndrome does Dawkins actually know? How many families with a Down’s syndrome child? How many hours has he spent baking cakes, paddling canoes and exploring nature with people with Down’s syndrome? For that matter, how many hours has he spent discussing evolution with people with Down’s syndrome? I have spent the last 20 years of my life doing all of those things – because Eddie is my younger son.
But maybe personal experience is not necessary. Show me the graphs, then, show me the numbers, show me the elegant experiments that show beyond doubt that people with Down’s syndrome spread a trail of unhappiness across their own lives and the unfortunate others they impact upon.
Dawkins told O’Connor: “It seems to me plausible… I have no direct evidence.”
To sum up, then: Dawkins is recommending that all pregnancies involving Down’s syndrome should be terminated. He has said that to do otherwise is immoral. He has said that the world would be a happier place if people with Down’s syndrome didn’t exist. He has no direct evidence for this claim.
Dawkins is supposed to be a scientist. Perhaps I am being naïve, but I always thought that the crucial difference between science and religion is that science is a matter of data, and religion a matter of faith. I thought that the first rule of science is that you don’t speculate without data.
Dawkins and I have both spent a great deal of our lives in the context of the same book: The Origin of Species by Charles Darwin. And it’s a book of data. It groans under the weight of its own evidence: majestically assembled and brilliantly explained. The first chapter is called ‘Variation Under Domestication’. Nine years later, Darwin produced another book The Variation of Plants and Animals Under Domestication; it can be considered a 1,000-page appendix to that chapter: “Everyone knows how greatly the different kinds of cabbage vary in appearance…”
Darwin speculated, sure, and came up with the greatest breakthrough in the history of human thought. But it wouldn’t have amounted to a hill of beans without data. We accept Darwin’s conclusion because he built a mountain of evidence, not because it seemed to him “plausible”.
There are two lines of thought we must follow here. The first is Richard Dawkins, the second is Edmund Barnes. Or to put that another way: the first is the power, influence and responsibilities of people who are seen as founts of wisdom; the second is what the lives of people with Down’s syndrome are actually like.
Dawkins’ work on evolution is magnificent. He writes in the best tradition of popular science – in the footsteps of Darwin, in fact, because the Origin was written for the general reader. Darwin and Dawkins assume considerable intelligence but little specialised knowledge in their readers.
I am richer for reading Dawkins. I have nine of his books on my shelves, though I confess The Extended Phenotype defeated me. They have an important place among the many other books I have read (and have written) on natural history, which is, of course, nothing less than the search for the meaning of life.
Dawkins has been vastly and rightly praised. Perhaps that went to his head. Perhaps he failed to see that the truly marvellous thing about his books was not their author but their subject. David Attenborough has always said that it’s not him that’s so wonderful, it’s what he shows us. That is true for all of us who write about such marvellous things, and I think it’s useful to remember that.
Gore Vidal famously said that it’s not enough to succeed – others must fail. By the same way of thinking, it is not enough to be right. Others must be wrong.
Dawkins established himself as a wise man. He wrote about evolution and was in many ways right. His next career move was to become the stand-up-and-be-counted atheist: now he could prove that other people were wrong. He set up a hollow man in the form of his own view of religion – none of those laser-minded theologians (I’ve been told that the interested might try Karl Rahner) were to be discussed. And he gave us a book called The God Delusion.
With this, he moved beyond his area of expertise and began to pontificate. The word is chosen deliberately: it means literally to make bridges, and the pope is traditionally referred to as pontifex maximus, the great bridge-builder. Pontificating is about being the pope.
Pope Richard has pontificated on many things beyond the remit of the evolutionary biologist. He has pontificated, with powerful language, on the subject of Down’s syndrome. He has responded to energetic disagreement by condemning people for their “wilful misunderstanding”. While that’s invariably true of internet debate, the issue is not the level of insults, it’s whether Dawkins has the qualifications to pronounce on the question of whether or not people with Down’s syndrome should be allowed to live.
His argument, established without evidence, is that the world is happier without such people. Many people share that view, it seems: 90 per cent of Down’s pregnancies are aborted.
It’s an issue of personal choice. But on what grounds do people make these choices? It’s been claimed by Don’t Screen Us Out, an independent organisation that campaigns on behalf of people with Down’s syndrome, that women pregnant with a Down’s syndrome foetus are not given the information to which they are entitled both morally and legally. That was certainly the case with us.
There is perhaps a subtle pressure on people in such a situation to opt for abortion. Most people are unaware that people with Down’s syndrome can live fulfilled lives and enhance the lives of people around them.
I can, here, offer the evidence of my experience. We weren’t forced to have Eddie because of tyrannical religious prejudices. It was a decision based on the subject Dawkins has written about with such certainty: life. My wife had a child inside her and chose not to kill it. Such was our right. Other people make other decisions; that is their right and I don’t go about calling them immoral.
But I would like to explain to such people – before they make the decision to abort – that Eddie was born and lives and thrives. When he was at his mainstream primary school, the head teacher said that he made the school a better place: more caring, more considerate. The pupils voted to give him their annual Peace Prize.
These days, he works two days a week at the excellent Clinks Care Farm down the road from us in Norfolk. He recently completed an Open University Course in photography, for which he was given a mark of 89 per cent. He has a passion for music. He is a valued member of his community. He has good friends of all ages, including his own, and I think they would all say that knowing Eddie has enriched their lives. He and I chase wildlife together. He asks questions like, “How does a buzzard come to fly like that?” I can answer that because I’ve read Darwin and Dawkins. I am wiser for reading them. I am also wiser in many ways for living with Eddie for the past 20 years.
Sometimes Eddie will tell us, “I love my life.” In my view, that’s a good reason for letting him have it. Eddie loves and is loved: is that not a sufficient qualification for life?
It’s not always easy, of course it isn’t. Eddie is not to be portrayed as a happy fool. He sometimes finds life difficult, incomprehensible, upsetting and dismaying. He has felt acutely the pain of loss. He sometimes feels that life is against him. He sometimes feels that the world doesn’t understand him. He sometimes wishes that things could be different. He is not always happy, no. But here’s the nub of it: such feelings are not unique to people with Down’s syndrome. Unhappiness is part of everybody’s experience, and so is happiness.
It’s been said that you judge a society by the way it chooses its elite and the way it treats the vulnerable. Dawkins says that people with Down’s syndrome shouldn’t be born. His implication, then, is that we can be let off the task of bothering about them. They shouldn’t be here.
His views are based on prejudice, not evidence, and they are actively damaging to people with Down’s syndrome. To state such a view is not kind or generous or responsible; on the Voltaire principle, Dawkins has a right to express it. But Dawkins made his name as a scientist and the world assumes that, when he speaks out on an important topic, he does so as a scientist. We assume that his words are measured and based on data. So when he offers views based wholly on prejudice, fear, distaste and ignorance he is cheating his public.
But perhaps Dawkins has outgrown the use of data. I read and reviewed his autobiography and found it a disappointing read. It’s called An Appetite for Wonder, but it’s a book remarkably short of any sense of wonder – certainly, the reader doesn’t waste any time wondering at the beauties of nature, nor, for that matter, at the author’s humility in the face of such things. I think now that he should have called it The God Delusion.
And thank you very much for asking – yes, Eddie had a very happy birthday.
Photographs courtesy of Eddie and Cindy Barnes