ALMOST every day, I pass a little boy with Down's syndrome coming home from school.
As he bounces along the road, his face beaming, he is so cute I want to pick him up and take him home. At my local church, too, there are special masses in which adults with DS play a leading role. They are among the most moving services I've been t
o, perhaps because those involved throw themselves so unreservedly and so unselfconsciously into proceedings.
Of course, I realise these brief encounters give me no real insight into what it would be like to raise a child born with this condition. Moreover, harping on about how "loving" and "unaffected" people with DS are, is borderline offensive, suggesting as it does that they are a homogenous mass rather than individuals with distinctive personalities like everyone else.
So let me be clear from the outset, I don't doubt having a son or daughter with DS would be a challenge. Many suffer serious medical conditions such as congenital heart defects. And any child with mild to moderate learning difficulties is going to require patience and extra support. Still, when you read first-hand accounts from parents of children with DS, you rarely come away thinking: "What a shame." Rather, the sense you get is that the child is a blessing; that, far from being a burden, he or she has added an extra dimension to family life.
Take Rosa Monckton, wife of journalist Dominic Lawson, whose daughter Domenica has DS. Every piece she writes about her experiences overflows with gratitude. "(Domenica] has brought us so much joy, so much love," she has said. "She has enriched our lives so much and made us realise what matters." In fact, the greatest frustration for parents of children with DS is often other people's negativity: from the doctors who assume they will get rid of them, to the so-called friends who commiserate over the birth, to the passers-by who stare.
There was plenty of that negativity on display last week when new figures published in the British Medical Journal showed the number of DS pregnancies had risen by 71 per cent over the past 20 years as an increasing number of women delayed motherhood until their forties. As testing allows for pre-natal diagnosis, and 92 per cent of those who are diagnosed go on to have a termination, this hadn't been mirrored by a similar rise in DS births.
Still, neither had they declined much, falling by around 1 per cent from 752 in 1989 to 743 last year. Part of the reason for this was that 30 per cent of women over 37 – those at highest risk of having a DS pregnancy – refuse to have the tests at all, a fact that concerned the researchers. "It is important to ascertain whether this decision is an informed one and, if not, to address the lack of information," said Joan Morris, professor of medicine at St Mary's, University of London.
Now, I have every sympathy with women who, faced with the news their baby has DS, decide to end their pregnancies. But what an appalling insight this report gives into the medical profession and its dismissive attitude towards disability. Not only is the fact that 92 per cent of those diagnosed choose to terminate presented as a de facto social good, but the judgment of the women who refuse tests is called into question. To many doctors, the idea that a woman would want to have a baby with DS is so outlandish that the decision to refuse tests must be born of ignorance rather than conviction. It doesn't seem to occur to Professor Morris to apply the same logic to the 92 per cent of women who, having been told their baby is DS, decide to end their pregnancies. Mightn't their decision also be driven by misapprehensions? Or by doctors' assurances that having a termination is what is expected in these circumstances?
As I said, I am not getting at those women who choose to go down the termination route. But I do object to the way in which the debate on DS is being skewed by those who seem to believe disabled is synonymous with worthless. And I wonder if women with DS pregnancies are being presented with a balanced picture of how their baby's condition might affect them. Are they told that many children with DS go on to live happy and productive lives? Or are they just given a worst-case scenario and the number of the nearest clinic?
This negativity permeates the whole of society. In 1995, Claire Rayner, then a patron of the Down's Syndrome Association, suggested that women who refuse to be tested should ask themselves "if they have the right to inflict the burden of caring for people with DS" on others, a statement staggering in its contempt for the rights of those children to exist and for the benefits they might bring society as a whole.
As for those who say: "But would you want to condemn your child to a life of suffering?" I just don't understand their point. Where is the evidence that children with DS are more miserable than anyone else? And where is the parent who is able to guarantee any child a pain-free existence? If your DS tests come back negative what guarantee does that give you? Not that you will have a healthy child. Not even that you will have a happy one.
Is giving birth to a child with DS really such a terrible fate? Is it more distressing than having a severely autistic child? Or a child with ADHD? Or no child at all? Isn't it likely that, for many older women, the fear of having a baby with DS pales in comparison to the fear of never experiencing motherhood? What a travesty it would be if, in its obsession with the burden that children with DS place on the NHS, the medical profession sought to deprive these women of the opportunity to have their lives deepened and enhanced.
