It’s Time To Change The Angle On The Pre-Natal Testing Debate

A letter from John Conway, Chairman of SCAMPPS

The relentless quest to find methods to test embryos for every kind of condition and syndrome is a damning indictment on our understanding of and attitude towards disability. 

The imminent development of a pre-natal test for Autism is undoubtedly the result of more ‘wonder science’. The advances in this area seem to be arriving so thick and fast that we have barely had time to draw breath before the next pre-natal test for the next condition is upon us and the last test is simply taken for granted before any cautionary debate can get a foothold.

There have been some dissenting voices but these aggregate to little more than a collective ‘hmmpphh’ and really miss a more fundamental point. For example, Professor Simon Baren-Cohen at the Autism Research Centre laments the probability that some fine talent will be lost as a consequence of the inevitable terminations of pregnancies resulting from positive tests for Autism.  India Knight, writing for the Sunday Times on the 18th of January, tells us that ‘The day when women sit around screening themselves for every imperfection doesn’t seem far off’ and adds ‘I can’t say I’m looking forward to it’.

These comments are hardly likely to have our ‘wonder scientists’ stopping in their tracks and questioning the point and consequences of their research. Surely the point is this: do we believe people with disability add to our society or not? Economically the answer is simple but this debate is about love not money.

As a parent of a child with Down’s Syndrome (and Down’s Syndrome, as we know is already on the black list), I understand the trauma of becoming the parent of a child with a disability. I also understand that when a parent comes out on the other side of their initial shock, they discover a world full of people, besides themselves, desperate to love their child. People who were previously unknown to them whose day is now made by their own interaction with that child.

You see; people with disabilities help us find qualities in ourselves that we may have never known we possessed and these qualities are very, very good.

Children with disabilities can completely change parents’ lives in a way they would never have wished for but, in time, parents will more often than not explain that they have become ‘better people’ as a result. Professor Baren-Cohen needs to be more appreciative of the gifts that all children with disabilities have; the ability to draw out goodness from the people in their lives. I call this the ‘economics of love’ and in these financially dark times we can ill afford to set the wheels in motion to run up a very different type of ‘toxic debt’.

As for India Knight. Surely those given the opportunity to share their musings through the national media can rise to the occasion with a deeper thought or two. Could she not have spoken out on behalf of those people with Down’s Syndrome and Cystic Fibrosis and Autism who are being made to feel guilty about their very existence and their parents who are implicated as reckless for bringing them into the world in the first place.

We all need to do much better with this debate or should we just accept the way of the wonder scientists and tumble towards their much better world with no disability and, eventually no-one to care for?