Down's Syndrome people risk 'extinction' at the hands of science, fear and ignorance

A baby sucking it's thumb
A new test increases the chance of spotting Down's, which will inevitably lead to a rise in abortions Credit: Blend Images/Alamy

painting hangs in the Metropolitan Museum of Art, New York called The Adoration of the Christ Child. Created in the 16th century by a Flemish artist, what stands out in this sublime presentation of the Nativity is the detail of the characters standing around the crib. Two of them, an angel and a shepherd, appear to have Down’s Syndrome.

This suggests that the condition has been around for a very long time, and it helps illuminate the early modern approach to disability. Religious art normally conformed to classical standards of beauty. By implication, the artist regarded people with Down’s as angelic. As, indeed, they are.

The Adoration of the Christ Child, by a follower of Jan Joest of Kalkar (circa 1515) 
The Adoration of the Christ Child, by a follower of Jan Joest of Kalkar (circa 1515)  Credit: The Jack and Belle Linsky Collection, 1982

Unfortunately, society goes through peaks and troughs of sympathy towards the disabled – and we risk entering a darker age. The National Screening Committee has approved a simple blood test for Down’s Syndrome that in many ways is wonderful news. It should reduce the need for invasive testing procedures, which trigger around 350 cases of miscarriage every year.

"There is nothing shameful about Down's and people don’t suffer from it. They live with it."

But what do most women do when their baby tests positive for Down’s? They abort. Around 90 per cent of pregnancies that involve the condition end in a termination. In 2014, 693 abortions were carried out for this reason – a jump of 34 per cent since 2011. The rise is blamed on increased access to blood tests via private clinics. American campaigners warn of the risk of "extinction". In Denmark, the head of a midwife association blandly told a newspaper: "When you can discover almost all the foetuses with Down Syndrome, then we are approaching a situation in which almost all of them will be aborted."

It’s the woman’s right to make this choice and the reasons why it’s taken are entirely understandable. We’d all be frightened of the thought of being left to ourselves to care for a disabled child. But these fears are shaped by a popular culture that, for all its apparent sophistication, remains remarkably ignorant about the realities of Down’s.

Myth #1: Down’s Syndrome is an embarrassing disease. It’s not. It’s due to an extra chromosome being present in a baby’s cells – it’s not “inherited”, it’s not “caught” like a cold and it’s not due to “mistakes” made by the parent. There is nothing shameful about it and people don’t suffer from it. They live with it.

Myth #2: Down’s Syndrome kids die young. They used to, and it’s quite true that they can be susceptible to problems such as heart defects or deafness. But huge advances in care mean that most now live into their sixties, and lead very active lives.

Ms Brewer was the first model with Down's syndrome to grace the runway at New York Fashion Week 
Ms Brewer was the first model with Down's syndrome to grace the runway at New York Fashion Week  Credit: Getty

Myth #3: Down’s Syndrome kids remain kids forever. They don’t. They grow into adults like you and me, with all the same emotions, worries and joys. The important thing to remember is that every case is unique and each individual capable of a different level of personal development. Some choose to date and marry. Some keep down jobs. Fans of the US show American Horror Story will know that they can be TV stars, too. Actress Jamie Brewer has not only impressed critics in the series but has walked the red carpet at New York Fashion Week.

"Quality of life isn't defined soley by the pain people endure – but how we respond to that pain both as individuals and as a community."

I’m not making a case for banning abortion in instances of diagnosis, rather that mothers who discover they are pregnant with a Down’s Syndrome child should be informed of all the options available to them. One is to terminate, which is a woman’s legal right. The other is giving birth and raising a child who can contribute to the world in their own particular way. There will be challenges. But quality of life isn't defined soley by the pain people endure – but how we respond to that pain both as individuals and as a community.

Ben Small, right, with Lloyd Wilson on the first day of his new job 
Ben Small, right, with Lloyd Wilson on the first day of his new job  Credit: Mercury Press & Media Ltd

Society, alas, promotes a different ethic. We seem increasingly obsessed with making life as perfect as possible – as if we could control its beginning, middle and end. Advances in genetics hold out the possibility of creating designer babies with no birth defects at all. Euthanasia gives the option of finishing things early when existence gets too much to bear. And implicit in all of this is the view that life isn’t truly valuable unless it is healthy, pain free and contributing to Gross National Product. The sick and the old are a burden. The most helpful thing they could do is go away.

Excuse the cliché, but it’s hard not to see of all this happening and think of the 1930s – when the Western world became hooked on the idea that it could create a cleaner, happier population with the application of medical cruelty. This was barbarism disguised as reason.

The true moral test of a society is not how pretty, sober or well organised it is – but how it treats its most vulnerable, even its most difficult, citizens. And the true sign of grace in a man is his ability to look at something that is supposedly ugly, or just different from himself, and see beauty. Just as one Flemish artist managed to do, 500 years ago.

 

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