If you don’t know much about Down’s Syndrome testing then, on first viewing, Jane Fisher’s statements on Radio 4 this week might sound appealing.
The new non-invasive prenatal testing (NIPT), she says, is safer and more accurate than the current test, is already available in Wales, is being held up by bureaucracy, and women in England are “desperate” for it. Those campaigning against the test are hardly worth a response, it seems from the interview, so their arguments can’t be that important.
But while the strategist in me would appreciate the opportunity to plan for my family’s future, the realist in me believes the statistics indicate that for most people, this plan will take the form of an abortion appointment. In Iceland and Denmark, which have almost universal screening, there are reports of close to 100 per cent abortion rate of babies with Down’s Syndrome.
Understandably, family members of those with Down’s Syndrome did not take Fisher’s comments well. Sally Phillips, an actor whose son has Down’s Syndrome and made a thought-provoking BBC documentary in 2016, A World Without Down’s Syndrome?, tweeted on Thursday:
“We, with #livedexperience of #DownSyndrome stand against the lie that it is better for the child not to be born than to be born, and in huge numbers we can testify that it is also untrue that the family and siblings would be better off not loving and being loved by people with #DS.”
Responses to the tweet are full of joyful stories and pictures of individuals with Down’s Syndrome and their families.
For any parent excited to meet their child, there must be turmoil to be told that your child may not be able to live the idealised life you expected them to have. I am sure that for many parents it was a difficult decision to have an abortion, and I can’t imagine the pain and confusion they may have felt. But Sally Phillips’ implication is chilling – parents are deciding that the quality of life for their child would be so awful that it is better that they are never born.
What criteria do they use to make this conclusion? It is clear that children and adults with Down’s Syndrome can be happy, loving and loved. Isn’t that enough? And if not, in researching this article I have read stories of people with Down’s who are elected officials, educators, restaurant owners, actors, artists and athletes. Is their quality of life so awful?
Perhaps the parents’ concern is more related to their own ability – or willingness – to parent a child who may need additional care and attention. Having never been in this situation, I cannot speak to the fears and doubts that might plague parents and do not make judgement on them.
"In a society that highly values intelligence, will we one day decide that there is an IQ level so low that it would be better for a child to be aborted?"
I do share the same fear as the ‘tweeter’ who noted, in response to the Radio 4 interview, “What level of learning disability makes it acceptable to test and terminate?” Long-term, this is a much wider issue than just Down’s Syndrome, or even just disability, as technology advances and more testing becomes possible. In a society that highly values intelligence, will we one day decide that there is an IQ level so low that it would be better for a child to be aborted? What about people who are blind, or even just short-sighted, in a world where visual mediums like TV and WhatsApp messages are taking over from radio and phone calls? People have committed suicide because of bullying over their hair colour – could parents decide that their ginger unborn baby should be aborted?
These might seem like an extreme view to take. But an investigation by the BBC’s Victoria Derbyshire programme this week, backed by MPs and charities, found that NIPT misuse is also leading to the abortion of unwanted girls in the UK. It’s a worrying sign of what might be to come.
Most of us aren’t involved in campaigning on this issue and do not currently face the decision of how to react to the test of our own unborn child. But we can respond to those who have, or are now, facing the decision of how to act following a Down’s diagnosis, and we can ensure that people with Down’s Syndrome do not feel isolated in our churches.
When I was a teenager, every Christian my age had a wristband – possibly a t-shirt too – with the letters W.W.J.D. – What would Jesus do? I think He would spend time with those that society ostracised (Mark 1:40 – 45). I think He would dialogue graciously with those who struggled to act in line with His teaching (Matthew 16:24). And I think He would show compassion to those who were suffering (Psalm 116). Let’s try to do the same.
Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience (Colossians 3:12).
