There has been much written and said about Down’s syndrome over the last month or so leading up to, and since, Sally Phillips’ documentary A World without Down’s Syndrome. Some of what I’ve read has been balanced and fair, recognising that the discussion Sally has started is not an easy one for some to join in but some of what has been printed has been defensive knee-jerk reactionary nonsense from some people who should know better.
I asked friends and work colleagues to watch A World Without Down’s Syndrome and let me know what they thought. Largely these are people who have are representative of the general public, aware that Down’s syndrome exists but not really knowing the impact on family life of having a family member with the condition. The response I received was typically like this one:
“I watched the programme thinking I was prepared. I wasn’t expecting to be so blown away.”
“I had no idea that babies could be terminated right up to birth. It’s awful.”
“I cried like a baby. That was so powerful.”
Over this weekend the government has leaked news that it intends to implement Non-Invasive Prenatal Testing (NIPT) on the NHS from 2018. This is not a surprise. However, it is disappointing that they have not waited for the report due from the Nuffield Council on Bioethics which is due in February 2017 before deciding to proceed. It shows a total disregard for ethics in medicine today and a total disregard for disabled people generally.
It is widely accepted that NIPT will pick up over 100 cases of Down’s syndrome which would not have been picked up on the current screen and that this will increase the number of terminations of babies with Down’s syndrome whilst saving far fewer chromosomally typical babies who would have miscarried following amniocentesis. In effect the government are indirectly approving the sacrifice of many babies with Down’s syndrome to save a few who don’t.
So what’s the answer?
How does the Down’s syndrome community respond to this?
Over the years I have spoken to hundreds, probably thousands, of families with a family member with Down’s syndrome. Very few would say that they wish their child had not been born. The vast majority accept that their lives are far richer for joining this world – a world WITH Down’s syndrome – a world they knew nothing of before but would not go back to how their lives used to be.
And the most important people in this conversation are people with Down’s syndrome themselves. The government has done nothing to engage people with Down’s syndrome in the conversation. Is this really the world we want to live in? It is doubtless a very difficult conversation to involved people with Down’s syndrome. Understandably adults with Down’s syndrome, who may otherwise be very articulate in their speech, suddenly become tongue tied and stumble over their words, unable to express themselves or even process their thoughts coherently, such is the devastating nature of the conversation.
But that doesn’t mean they should be ignored. Far from it. It means we need to step back and think about what it would mean to us if suddenly society wanted to implement screening for likelihood of having a heart attack, stroke or developing cancer. For the technology approved has the capability to do just that and there was a chilling moment in the documentary when collectively we all realised that point. And shuddered.
But surely they will never use this technology for that will they?
Having been ignored by the government it is imperative that we do all we can to change society’s understanding of Down’s syndrome. Yes that includes government and people in positions of power, doctors, consultants, midwives, etc. But it also, and more powerfully, involves your next door neighbour, the people in the street, work colleagues, the woman walking her dog in the park – this is where change happens, in the hearts of ordinary people.
We need to show that people with Down’s syndrome are involved in everyday life (as they are) and whilst there are undoubted challenges, we must remember that no child is born with a certificate of guarantee that they will remain free from being tarnished in some way. We can’t go around calculating lifetime cost of one human being against another. How would we offset this in the credit column? How much is it worth when someone makes you smile? How much is it worth when your heart feels like it will literally explode because your child has done something to make you proud? How much do we deduct from our own account when we lie, cheat, steal, discourage, disappoint, hurt, backbite, etc, etc, etc?
Any credit I have gained I would gladly transfer to Emily’s account. However, she doesn’t need me to. She is more in credit than I!
No, it is impossible to measure worth in pounds and pence. We are all equal.