Dominic Lawson: A simple lesson in humanity
Every person with disabilities is defined – like all of us – by unique personalities and aspirations
Wednesday, 17 September 2008
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.
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Comments
23 Comments
Why do people assume that parents of people with Down's Syndrome are all anti-abortion? If they were, wouldn't all the Down's Syndrome organisations have a policy on termination that reflected that, but iof you check, they argue for INFORMED personal choice, mainly because they know that the balance of information given to parents with a pre-natal diagnosis is generally very negative and assumes they will opt for termination.
If it really is a personal choice, then the only people that can make it are those involved with that individual child. We are all different - we have different life experiences, different moral, religious and cultural beliefs and different personal circumstances - any choice must be made made considering all of these things.
Whatever the decision is, it will be hard and have a long lasting effect on one's life, it does not need to be made any more difficult by the judgement and recommendation of other people who will probably never be in this situation.
Posted by Anonymous | 22.09.08, 11:06 GMT
I will say it again (I seem to post this after Mr Lawson's articles all the time): It is not eugenics where an individual makes their own choice about whether they can cope and bring up a disabled child or not. It is not clear at what point a foetus becomes a child, and until it is it should be up to individuals to decide what they can cope with in their lives. It should certainly not be up to privelidged and long-term secure people to decide on the behalf of others.
Posted by Chrissy | 18.09.08, 13:25 GMT
Yes, many children with Downs syndrome grow up to lead happy, meaningful, and relatively independent lives. Equally, many do not.
You and yours are wealthy and extremely privileged. You can afford the extra burden of looking after a disabled child, if necessary by hiring nurses and carers, along with the usual nannies and tutors (and riding lessons, come to that).
The financial implications of a severely handicapped child can ruin many ordinary folk. Such a child may also be expensive in terms of public money. This is why so many disability terminations are performed, with public support, not because of any input from the Eugenics Society or others holding Stopes's personal views.
Posted by wonjale | 18.09.08, 10:30 GMT
Hmmmm.... having been doing a bit of research about Stopes online....bit weird isn't it? Also been reading these comments too...
Politically I think Palin is not 'leading nation leader' material, also think Stopes did _some_ good things in hindsight (which is hard to judge, of course).
I'm all for equal right for women, pro 'choice' and think sexual health issues are important (epecially in those young folk today) but whether I think what she's done is for the 'greater good' or not, and think that anti-semitism and prejudiced against people with disabilities is bad or not, can't get over the fact that she's going to be on a stamp???
There's no way that condoning her 'bad' views is a good ideas, good ones; fine.
But, as Charlie (I guess, correct me if I'm wrong) said, you gotta be reeeeeeeeaaaaly good to get on a stamp!
Posted by Sara | 17.09.08, 22:53 GMT
Whatever the merits or otherwise of Mr Pearson and Ms Stopes the Royal Mail have a clear rule about whose faces adorn stamps. You either have to be dead or a member of the Royal familly. Sorry Lee you will have to wait.
Posted by charlie | 17.09.08, 21:30 GMT
A new set of stamps:
Bernard Manning
Benny Hill
Jim Davison
Roy Chubby Brown
Perhaps, with a few topless birds in the backgrounds of their pictures?
Posted by Bernard Manning RIP | 17.09.08, 20:05 GMT
Obviously individual circs vary enormously, choice very important in these matters, at any given point in their lives some are in a much better position than others to raise a child at all, mainstream able or not...
But the unique individuality of each & every child (able or disabled) & power of parental love certainly have untold worth, far more than labels, prognoses & a stats mentality, and emphasis in soc. should be without a doubt on defining all as individuals and by their `unique personalities and aspirations.
(So v. pro `choice / but would much prefer to see Lee Pearson on a stamp than M S ... & wary of labels that `diminish' humanity!)
Posted by nfrith | 17.09.08, 19:58 GMT
I would like to see Roger Alton's face on a stamp arriving through my letter box - the man is a genius ..and those new sex guides were just fantabidozi !!
Posted by Alice Rubbisher | 17.09.08, 19:34 GMT
Marie Stopes may have been many things, but she was definately as described above.
Hitler, was a brave soldier, who ran messages through the first world war trenches, Stalin, was a amn who stood up for the freedom of georgia as a young man, Gary Glitter was someone who brought enjoyment to millions, but to put any of these people on a postage stamp would seem rather cruel and unfeeling towards large sections of the community. Nomatter what their good points, their bad ones are of such severity. Perhaps, even after birth, disabled people dont have feelings?
Posted by Robert Price | 17.09.08, 16:47 GMT
My sister was born disabled, I suffered the misfortune with the army, so it was not real difficulty when I chose this subject to concentrate on when studying medical law.
A disabled foetus does not have the same freedoms as a 'healthy' foetus. Long after the date for whicfh most can be aborted because it is considered to have feelings by a certain stage, the disabled foetus may be aborted. Obviously the disabled dont have such feelings?
My sister has had a happy life, she even won a gold medal at the special olympics in cardiff 7 years ago. She continues to enjoy life, and argues with me like siblings do.
Posted by Robert Price | 17.09.08, 16:43 GMT
23 Comments