Rather a lot of us, it seems, have been born a chromosome short. In its place perhaps, an extra measure of arrogance. A superiority complex, some extra sense of entitlement and judgement. At least, that’s how I’m feeling about the society I live in, having watched ‘A World Without Down’s Syndrome?’ on Wednesday evening. It’s currently available here for a month if you’re allowed to watch BBC iPlayer. This programme really got my friends talking; it made many of them cry. I commend it strongly to you.
Sally Phillips, known widely for comic roles in the Bridget Jones films and sit-com Miranda has three sons, one of whom has Down’s Syndrome. She has an easy humour and a natural sensitivity in approaching the subject of the new tests being introduced to identify DS babies at earlier stages of pregnancy. She interviewed people across the spectrum: those who designed the new tests, a mother who had terminated a pregnancy, a blogger campaigning for better sensitivity from NHS staff with parents, doctors in Iceland and America, an advice centre, Karen Gaffney (famous for her swimming accomplishments and TED talk) and others. Sally and her team really did their homework and made sure to put their case over as wisely as possible. They were not out to cause offence or to judge people, making it clear that terminations are a mother’s choice and that DS comes with many ups and downs.
What became apparent, which so many of us already suspected, was that there really is an obvious bias in our society and among many health professionals (and those giving advice to people with genuine questions) against promoting live births for DS babies. That Down’s Syndrome is in some way undesirable and ‘too difficult’.
You see, although the Guardian and others misunderstood Sally Phillips, it is not the tests themselves that are the real problem, and this is the point she wanted to make; it is what we as a society feel about ‘imperfect’ babies and the decisions we make as a society about this. If more screening means more information, the evidence shows it will also lead to more terminations.
I did not have the blessing of bringing any babies with Down’s Syndrome into the world, although my lovely friend Julie has, and she has started a support group for families in Suffolk. It’s people like Julie and Sally, seeing the picture better, who need to be heard loud and clear.
“I said to the almond tree, ‘Sister, speak to me of God.’ And the almond tree blossomed.”
― Nikos Kazantzakis, Report to Greco