If you haven’t seen it already, run, don’t walk, to see Sally Phillips’ documentary: A World Without Down’s Syndrome. In it Phillips discusses a new, non-invasive, test offered by the NHS to diagnose Down’s Syndrome in utero. In Iceland, the test has led to 100% of expectant mothers terminating their pregnancies when discovering Down’s. In Denmark it’s 98%. Already in the UK, 90% of mothers terminate and Sally wonders aloud whether, with this new test, we will go the way of Iceland and effectively see a world without Down’s Syndrome.
Sally is the mother of Olly, an 11 year old full of life and fun (and who has Down’s) and she rightly sees this future as unthinkable. She interviews mothers, doctors, geneticists, and those with Down’s from around the world. What we discover through the documentary is truly disturbing. Let me highlight six chilling assumptions informing a culture that would enable the elimination of a subgroup.
1. Because feelings run high, facts should be silenced
This article was written before the documentary’s airing in which Jane Fisher, Director of Antenatal Results and Choices, complains:
“Sally is a very compelling presenter, and – absolutely – it’s great to have the positive images of people [with Down’s] who are already here. But it’s very personal, and it’s an extra layer of difficulty for couples and families who might be making the decision now about whether to end their pregnancy. It risks offering the suggestion to those who have [decided to end a pregnancy] that they have made the wrong decision.”
Translation: When things are so personal, it’s unhelpful to have the other side put compellingly. People might change their minds.
2. “Costs” are calculated in pounds and pence
At one point Sally interviews Lynn Chitty, professor of genetics and fetal medicine, and asks her about the cost of the test. Sally is talking about the high cost to society of, potentially, eliminating an entire population. Jane says “It’s not a high cost at all, our studies have shown that you can implement this at…” Sally interrupts “Sorry, I wasn’t talking about the financial cost… I was talking about an experiment… that may result in a catastrophic result [for] the Down’s Syndrome population.”
When one side is speaking about the cost of rolling out a programme of blood tests and another side is speaking about the survival of a group of people, we are talking at some pretty chilling cross-purposes.
3. Society should not be encumbered by the weak and vulnerable.
Lynn comes back at Sally with a question of her own. She asks: “How do you feel about later on in life? Because [Olly] is likely to outlive you. How do you feel about that prospect?” Sally responds: “the answer to that is not termination. The answer is that if we have a society that is unable to care for people, the problem is not the person.”
A mother whose vulnerable son will outlive her needs a society that will value the vulnerable too. Instead she is faced with someone who thinks the better course of action would have been termination. If Lynn’s views are at all representative of society at large, this is frightening indeed and it signals a 180 degree shift in our moral compass. In times past we would have thought the moral thing would be to care for the weak and vulnerable. We are shifting to a view where it’s not just permitted but positively virtuous to end the life of the weak and vulnerable because we no longer want to be a society that cares for the weak. We eliminate them
4. The good life is one that is free from pain and struggle
Sally meets Kate who decided to terminate her pregnancy at 25 weeks when they discovered Down’s. Kate tells Sally she’d done a lot of research – not just of the facts and figures but also listening to stories of those living with Down’s: “You see some of the difficulties that people were going through,” she says, “One woman whose 5 year old son still wasn’t walking… he was very heavy, having fits everywhere. If my child was affected as much as he was I’d feel really guilty about that, having been given the choice.”
After they watch inspirational footage of a gymnast with Down’s, Kate reflects that the gymnast clearly had to struggle far more to attain these achievements and it wasn’t something she wanted for her child.
Never mind that those with Down’s report being some of the happiest people on the planet, never mind that the greatest lives lived have been in the teeth of suffering, never mind that every human being must struggle in this world, somehow we have come to the view that a life of pain and struggle is simply not worth living.
5. The right to life is earned
Sally interviews geneticist George Church who is at the forefront of genetic testing in utero. As Sally raises the danger of people having ever more information about their offspring, Church says that our real battle is to educate the masses. If having children with DS is an enriching experience for all then Sally and others should keep doing what they’re doing (while George does what he’s doing). He urges Sally to “Spread the word that [those with Down’s Syndrome] are valuable members of society.”
Job done. We just need more information – both about the unborn and about their prospects in the real world. And if those with DS can be deemed to be valuable, no problem, right? Except, who says who’s valuable? And how? On what basis? The entire logic of Church’s position is that the right to life is earned. (Of course the position of the church is quite different: life is a sheer gift).
6. Personalising the issue is wrong.
Here’s something deeply ironic in the way the Guardian have reported this documentary. Before the documentary we were warned that Phillips was wading into emotional waters and could upset mothers with her compelling case (see point 1). After the documentary, came this review by Julia Raeside: It’s Straight From The Heart – And That’s The Problem. First the facts would upset people’s feelings. Then we’re told Sally’s case is all feelings, no facts.
Raeside says it’s “impassioned but not impartial” because Sally shows us her happy family life, her beaming, boisterous son, Olly, and the inspirational achievements of those with Down’s Syndrome. How unfair to personalise the issue. How unfair to bring these people, whose elimination we are discussing, off of the sonogram, out of the NHS leaflets and onto our screens, laughing, joking and dancing. Wouldn’t it be fairer if we dealt with them as…. what? Statistics? Lists of symptoms?
No, if we are dealing with people then it would not be impartial, it would be sociopathic to cast them in anything less than personal terms. That is the beauty and also the integrity of Sally’s documentary.
It seems to me that these six disturbing views are throbbing away under all our discussions in this area. Phillips’ documentary has done us a huge favour. She has confronted a culture of death with a beaming 11 year old and asked us: Who will we listen to? Let’s pray we choose well.