17:46 EST, 1 June 2014
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06:09 EST, 2 June 2014
Yesterday my younger daughter celebrated her 19th birthday with characteristic exuberance.
Yet immediately after she was born, on June 1, 1995, we had all manner of gloomy medical assessments of the shape she’d be in by now.
Domenica emerged into the world with Down’s syndrome, a surprise to the doctors as well as to her parents; and we were given the bleakest forecasts of what the consequences might be of her possession of an extra copy of the 21st chromosome.
Celebration: Domenica with her parents, Rosa and Dominic
She might never be able to talk or even walk. Her health would be a daily worry.
Twenty years or so ago, this might have been the standard prognosis given by doctors, but it was already hopelessly out of date – the one serious medical condition affecting about half of Down’s babies, a hole in the heart, has long been routinely corrected by early surgery.
And although Domenica’s speech can be hard to understand, one reason for that is that she talks incredibly quickly with a vast, if occasionally inappropriate, vocabulary.
I had no idea what to expect when she was born; but because I was concerned that people would not know whether to commiserate or congratulate, I wrote an article saying that it should be the latter — and how happy I was that her much-loved elder sister had a sibling.
On the whole, the reaction of readers was positive, but a small number said something to the effect of ‘She may be a beautiful and loveable baby now, but just wait until you see what a teenager with Down’s is like’.
Domenica Lawson presents a posy to Queen Elizabeth at the opening of a fountain built in memory of Princess Diana in London’s Hyde Park in July 2004
Well, she is still beautiful and loveable; and while almost all parents say that about their own children in normal circumstances, I have never yet come across a parent of someone with Down’s who has a bad relationship with them.
I suspect that the authors of those few critical replies were not themselves parents of Down’s children.
One of them was the late Claire Rayner, who in an article of response rebuked us for not having pre-natal tests for Down’s and declared ‘society’ would have to bear the burden of the ‘misery’ of Domenica’s life: in other words, this former nurse thought it would be better if all such people were detected in utero and aborted.
Rosa at the opening of the Diana Memorial Playgrond and Memorial Walk in Kensington Gardens
Incredibly, Rayner was at the time a patron of the Down’s Syndrome Association. Even more incredibly, she was outraged when the association immediately told her that her affiliation with them was the only thing being terminated.
But perhaps Rayner had just been expressing explicitly an attitude within the medical profession which normally remains implicit.
A few years ago, the BBC News website ran a selection of comments on this general issue and one, from a woman giving her name as Heather, from Livingston, is worth reproducing: ‘I was told that my daughter had Down’s when I was pregnant, and every doctor and gynaecologist I saw tried to convince me a termination was the best option. I was still offered this at 26 weeks!
‘One reason given to me by a consultant was that “these babies put a strain on the NHS�.’
In a way, the medical profession’s attitude is understandable. The invasive detection method, a form of foetal blood extraction known as amniocentesis, involves a risk of miscarriage of 1 per cent.
Given the very large numbers of ‘false positives’ in the initial scanning process, this means the lives of lots of babies with no disability are lost as an accidental by-product.
According to the official register, for every 100 instances of Down’s syndrome detected, about 400 ‘normal’ pregnancies miscarry as a result of the amniocentesis.
No wonder medics put pressure on a pregnant woman to abort when a Down’s baby is detected: if she does not, then their system is made to look even more crazy and wasteful.
Last year, however, a team from King’s College London announced it had made significant progress in developing a reliable non-invasive test for Down’s syndrome in utero.
This was enthusiastically hailed by one newspaper as potentially leading to the ‘eradication of Down’s syndrome’.
Forgive me for not joining in the cheering.
And besides, what is being eradicated? Not the condition, but only the people with it. The condition will occur with exactly the same frequency as before: the only difference is that the alleged sufferers will never see the light of day.
We are always told that the reason for all this is that people ‘suffer’ from Down’s syndrome.
‘She is still beautiful and loveable; and while almost all parents say that about their own children in normal circumstances, I have never yet come across a parent of someone with Down¿s who has a bad relationship with them’
Really? Has anyone in this country ever conducted a survey of those who actually have the condition? In the U.S., they have. In 2011, the American Journal of Medical Genetics published a paper – ‘Self- perceptions from people with Down’s syndrome’ – based on a survey of 300 people with the condition aged 12 and over.
The authors concluded: ‘Nearly 99 per cent of people with DS indicated they were happy with their lives, 97 per cent liked who they are and 96 per cent liked how they look.’
On that basis, it could be said that far from ‘suffering’ as a result of having Down’s, such people are more content with themselves and their lives than the general population.
I have been thinking more about this phenomenon, having just read the autobiography — What The **** Is Normal? — of the stand-up comedian Francesca Martinez, 35. She is someone with cerebral palsy (or as she refers to it, ‘wobbly’).
She writes: “I have several mates with “severe†CP (I prefer “uber- wobblyâ€) who fall over regularly or take an age to get a sentence out. But they tend to be happier than pretty much everyone else I’ve met.’
As she observes, unhappiness with one’s appearance is if anything more common among the able-bodied with no objective reason to complain.
Martinez says she is ‘pro-choice?.?.?.?I believe in the right of parents to choose what is best for them’.
But she gave a robust retort to a medic who had told her that as an adviser to parents with babies-to-be diagnosed with disabilities she thought it was best to try ‘to reduce the suffering in the world’: ‘Suffering is part of life. If you don’t want your child to suffer, then don’t have any in the first place.’
Then, in a direct appeal to her readers, she declares: ‘Most parents-to-be still fear their beloved newborn will turn out to be – oh, the horror – disabled.
‘My personal fear is that the child will turn out to be unhappy. I don’t care what he can or can’t do, how they talk or walk or how many fingers and toes they have. Because I don’t think that is a good indicator of happiness.
‘Forget aborting babies because of the suffering they might endure?.?.?.?Had my wobbliness been detected in the womb, my parents would probably have been advised, by a softly-spoken but firm doctor, to have an abortion.
‘To spare me (and them) a life of suffering. The concern is touching, but I think I’d rather take a punt on living.’
A charming indicator of Domenica’s fundamental joy in just being alive was when on her previous birthday, while cutting the cake, she refused to make a wish because ‘I have everything I want, now.’
Actually, she might not have been telling the whole truth. I think she hankered after having a boyfriend, possibly because she had seen how happy her elder sister is with such an adornment to her life.
So I am pleased to say that Domenica now does have a ‘boyfriend’, a delightful 19-year-old with a shock of red hair called Daniel. He too has Down’s syndrome.
He is also playing the title role of Barnaby Rudge in the current BBC Radio 4 classic serial of that novel by Charles Dickens.
Dickens had a special feel for those we call disabled, and Barnaby Rudge was one of those characters. It is imaginative of the BBC to cast a young man with Down’s to play someone with disabilities.
It is also a shattering rebuke to those who think people with Down’s syndrome are not fit to live in the first place.
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The comments below have been moderated in advance.
Benzllorente,
On the move….., United Kingdom,
4 hours ago
No child should be aborted.
usednurse,
Scottish Borders United Kingdom,
4 hours ago
I don’t disagree with a lot of what Dominic says but it’s very much based on his family’s experience of Downs. For many less privileged families the experience of raising a Downs child is very different, negatively so. He also underplays how widely different the effects of Downs can be in intellectual and health terms. And then there’s the life Domenica will lead as an adult when her parents die. This is a complex subject and the experience of one family doesn’t accurately reflect the very different experiences many others have. A doctor’s prognosis is always the bleakest possible outcome, not to discourage parents, but to prepare parents who will face exactly what they describe. Nobody is more delighted than the doctor when a gloomy prognosis proves to be wrong.
ddiggs,
Singapore, United Kingdom,
4 hours ago
Yes, SOME people are very fortunate, my mother less so. My sister was a much loved and adored severely disabled Down syndrome â€victimâ€, but not as big a â€victim†as my mother, who never left my sister’s side from the day she was born, till her death aged 46. My sister â€Charlieâ€, (not her real name) was waited on hand and foot, not able to speak, just â€gruntâ€, (we understood her) She could hardly walk, nor even dress herself. She drained every drop of life from a mother that worshipped her and wouldn’t have parted with her for â€all the tea in Chinaâ€, her words. â€Charlie†WAS her life, but what a price a lady and the rest of our family paid for that love. Was it worth all the 46 years of sacrifices, friendships, missed holidays, trips to the theatre, meals out etc, etc for the love of a totally dependent child? My mother thought so, but her capacity for LOVE knew no bounds, I’m less sure, not bitter, just less sure. Would I be capable of such unconditional love? I don’t know
China Girl,
Beijing, China,
4 hours ago
Glad to see this beautiful girl celebrating her 19th birthday. I worked with Down’s Syndrome young adults and they were great. Some were very independent, one couple told me they wanted to get married but didn’t want to live together because they liked living alone.
Ex-pat in Europe,
Koblenz,
4 hours ago
I wonder if the Down’s community would have the same view about us, the so called ‘normal’!! When you compare the unlimited Love given to one and all by a Down’s person, to the horrors committed by SOME ‘normal’ folk. One can but wonder!! I have worked with Downs and I believe that I can honestly say, I have never met a Downs Sydrome person who would deliberately set out to intentionally harm or upset another human being. That cannot be said about the many so-called ‘normal’ people I have worked with!
Moggie_P,
Lancaster, United Kingdom,
4 hours ago
A person born with Down’s challenges the thinking not only the parents but also the general public. I have yet to see a person with Down’s who has not succeeded at some level. The only limits on development for a person with Down’s are those imposed by society. Well done to this young lady and her family for believing in her and her abilities.
shijuro,
plymouth,
4 hours ago
Didn’t a UKIP chap suggest this?
One who knows,
Wiltshire,
4 hours ago
I have a DS niece who is now in her early 30?s. She lives almost independently. She works part time in an up market hotel in the town where she lives. Everyone loves her, she never forgets to send us a Christmas card. She is just a gorgeous young lady. I don’t think she has a nasty bone in her body unlike some that comment in this on line paper.
woollysheep,
Llandudno,
4 hours ago
I have two children with disabilities. When I was pregnant and the doctors assumed I would abort I was horrified. I knew I would love that baby what ever disabilities. Thirty years later those “babies†will never be able to support themselves financially. They will always need someone to care for them. This costs the taxpayer much money. But I worry most about what happens when they no longer have parents to support them. No one could love their children more than I do. But I know I made the wrong choice.
Roger,
4 hours ago
We have friends with a child who has this so called “conditionâ€. He’s a great wee person, full of character, laughs and fun.
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