Dominic Lawson: A simple lesson in humanity

Every person with disabilities is defined – like all of us – by unique personalities and aspirations
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The Independent Online

It could be described as the ultimate stamp of approval – to be commemorated on the surface of countless letters sent across the country every day. All of us will have our own idea of the sort of person who deserves the immortality of appearing on a postage stamp. In the closing days of the Paralympics, I would like to nominate Lee Pearson.

You might have read Lee Pearson's extraordinary story in last Saturday's Independent, following his third equestrian gold medal in his third successive Paralympics – and his ninth in total. At his birth, 34 years ago, his little body was so disfigured that the nurses hid him in a broom-cupboard while they wondered what to tell his family. His condition was subsequently diagnosed as arthrogryposis multiplex congenita.

Even after countless operations Lee Pearson is only able to control his horse, Gentleman, with his lips. Between the quadrennial Paralympics, he makes a living managing his own stables. I suspect that his enormous self-belief stems from maternal love. He has described how when the nurses at his birth finally allowed Lynda Pearson to see him, "Mum took a gulp, picked me up and gave me the first of a million cuddles".

That wonderful mother would have been thought deranged – wicked, even – by the woman whose face is about to adorn a 50p stamp: next month Royal Mail will be bestowing this honour on Marie Stopes, marking the 50th anniversary of her death. According to the panel which decided on this form of secular sainthood, the abortion clinics which still bear her name "saved many women from a cycle of pregnancy and children".

Ah, but there's so much more to remember about Marie Stopes. She was the leading British eugenicist of her day – indeed, she left the great bulk of her fortune to the Eugenics Society, a body that had campaigned for "racial purity". It is commonly said that many enlightened folk in the first part of the last century supported the compulsory sterilisation of "inferior types" and that we shouldn't judge them by our own standards – having the historical record of the Nazis' practical interpretation of these theories. Stopes, however, was regarded as anti-Semitic even by some other pioneers of the British birth-control movement: understandably so, since she attended the Nazis' Berlin congress on "population science" in 1935, and subsequently sent a volume of love poems to the Fuhrer.

Marie Stopes applied her philosophy unflinchingly to her own family. She cut her son Harry out of her will for marrying a short-sighted woman called Mary Barnes Wallis (incidentally, the daughter of the inventor of the "bouncing bomb" which did so much damage to the Nazis' industrial war machine). Stopes wrote: "She has an inherited disease of the eyes which not only makes her wear hideous glasses so that it is horrid to look at her, but the awful curse will carry on and I have the horror of our line being so contaminated and little children with the misery of glasses... Mary and Harry are quite callous about both the wrong to their children, the wrong to my family and the eugenic crime."

Nowadays anyone who wrote such a letter would be thought of as not just bad, but even a bit mad. Yet Marie Stopes is not such an outdated figure as we might like to imagine: she would have approved very much of the pre-natal screening for disabilities which is vigorously promoted by modern British governments; this is designed not with treatment in mind, but to encourage the elimination of congenital abnormalities – in almost all cases, Down syndrome – by termination.

Yesterday a powerful critique of the way in which this is carried out was published by Down Syndrome Education International, a charity which works with families in more than 170 countries to help with the education of young people with the condition. The report, "Wrongful Deaths and Rightful Lives", points out that because of the very high false positive results of genetic screening, and the risks of miscarriage resulting from subsequent amniocentesis, for every 660 Down syndrome babies "prevented", 400 "normal" foetuses are lost. At the same time, the report makes clear that the medical advice given to very vulnerable mothers-to-be tends to paint an anachronistically bleak view of the prospects for those born with Down syndrome. As the charity argues: "Only people with Down syndrome and their families are qualified to discuss what living with the condition is like."

The Republican vice-presidential nominee, Sarah Palin, is one of the small minority of expectant mothers who decide to carry to term a baby diagnosed with Down's. Some of her political opponents see this as a hostile political act. The chairwoman of the Democratic Party in South Carolina, Carol Fowler, says that John McCain has chosen a running mate "whose primary qualification seems to be that she hasn't had an abortion", while for Salon magazine's Cintra Wilson, baby Trig constitutes "the anti-abortion platform that ensures [Palin's] own political ambitions". The idea that Sarah Palin made her decision as an act of love, rather than of politics, is clearly incomprehensible to some.

It's true that little Trig was paraded by Mr and Mrs Palin on the platform of the Republican National Convention; but so – in time-honoured American style – were their other children. Speaking as the parent of a child with Down syndrome, I would have found it much more offensive if the Palins' youngest child had been excluded from the love-in – even if it was after his bed-time.

This act of public exposure – however vulgar it might seem to many in Britain – has a much wider benefit. By making baby Trig into a known individual, rather than a mere statistic of chromosomal abnormality, the Palins are helping the wider world to understand the crucial point: that every person with disabilities is different, not defined collectively by their limitations, but individually – like all of us – by unique personalities and aspirations. It is exactly the same lesson that has been taught to us by Lee Pearson.