Nobody’s perfect, so why can’t we embrace certain imperfections?
A BBC documentary by actress Sally Phillips explored prenatal testing for Down syndrome, says Sarah Caden, and asked where such screening might end
LAST Wednesday, I expected to be moved by actress Sally Phillips’s documentary, A World Without Down’s Syndrome. I have a child with Down syndrome, so I knew that a film about whether prenatal screening for it will lead to ‘elimination’ of it was going to be emotional. Because, I thought in advance, it’s going to be, to some extent, about my life.
I expected Phillips, a comedic actress known to us from I’m Alan Partridge and Bridget Jones to be angry, too, on behalf of the child with DS in her life, her son, Olly.
I expected it to be a film making a point to us, the people already part of the DS community, the ones already embedded in it. Instead, though, it was about all of us. It wasn’t just about DS. Or termination. It wasn’t just about a celebrity selling us DS as acceptable and loveable. It was about who we are as a society and who we want to be and who we want to be around us. And I was even more angry at the end of it than I could possibly have anticipated.
At one point in her film last week, Phillips went to meet Dr Lynn Chitty. Dr Chitty is responsible for the development of non-invasive prenatal screening in the UK, including screening for Down syndrome. When they met, a decision was due to either accept or reject Dr Chitty’s proposal that this screening should be made available on the NHS.
Phillips’s contention was that availability of this screening privately had already seen an increase of 25pc in the number of women terminating in cases of DS diagnosis and that NHS availability would “screen out” DS entirely.
Dr Chitty took exception to Phillips’s use of the phrase “screen out”. She said that she had been most distressed when a journalist rang and asked if they were planning to “annihilate” DS. She explained that this was all hypothetical for now and that their study is to see what “happens in practice if you give women the option… you have to wait and see what happens”, said Dr Chitty.
“It’s at quite a high cost,” said Phillips, and Dr Chitty began to reply that the costs aren’t high at all. Phillips interrupted to point out that she did not mean the financial cost, but the human one.
“It’s an experiment that may result in people choosing not to terminate and just choosing to know, or it may lead to a catastrophic result on the Down syndrome population,” Phillips said.
“Well, the pilot study would suggest that it’s not going to result in the latter,” said Dr Chitty, before changing tack. “So you have… how old is your son?” she asked Phillips. “He’s 11.” “Um, how do you feel about later on in life when, well, he’s likely to outlive you, so what does that prospect hold for you?” asked Dr Chitty.
And the look on her face. As if she’d delivered the trump card, the argument that puts paid to all others.
“Well, I feel that the answer to that is not termination,” Phillips replied, though she looked like she couldn’t choose between wanting to cry and wanting to slap Dr Chitty, or maybe that’s just me projecting. “If we have a society that is unable to care for people, then the problem is not the person.”
From where I stand now, I believe that I know what my decision would have been had we been given a diagnosis of Down syndrome during my second pregnancy. It’s possible, though, that this certainty is down to the fact that now I am the mother of a six-yearold girl, whose possession of an extra chromosome was revealed to us soon after her birth.
Mary is here. She is terrific and a constant revelation and a great little girl and I love her more than I can say. But that is because I know Mary. I know she’s great. I couldn’t imagine life without her. And I couldn’t imagine her without Down syndrome.
But I cannot know for sure what I would do if I was an expectant mother who knew nothing about DS and was only being told the bad things about it. And so, I cannot really judge anyone who chooses to terminate upon receiving a pre-natal diagnosis of Down syndrome.
I thought of all the bad stuff when Mary was born — the potential heart condition, the unpredictable degree of intellectual disability, the effect her existence would have on her older sister. And the fear of what would become of her when I am gone, which came only a split second after hearing the words ‘Down syndrome’ in the delivery room.
This is pretty much all that will be presented to a couple given a prenatal diagnosis: the bad stuff. And there is bad stuff. It is more difficult bringing up a child with Down syndrome. It takes more effort, more commitment, more fighting for assistance, more help with homework, more worry over who will be their friends and their boyfriends and even their employer.
So while I cannot judge anyone who chooses to terminate after a pre-natal diagnosis of Down syndrome, I can say to them that they’re missing out on a lot more than the bad stuff.
And the bad stuff isn’t really that bad. Your typical kids are going to be a struggle, too. Maybe even more of a struggle, in many ways.
But, oh, there is good stuff. There is an abundance of it. Mary brings a lot to the party. She is funny: and not “aren’t ‘they’ cute with their funny little ways?” She’s deliberately, consciously funny, having recognised it as an ice-breaker and a friend-winner. She is observant and quick-witted and great company, a great ally and a formidable foe. And, yes, I would say that because I’m her mother; but I see what she brings to her sister, to her classmates, to her pals.
I know that having her has altered how I see the world. I’m not going to spin any crap about becoming a better person, but I value the fact that I have had my notions tweaked regarding what matters in life, who matters in life, how the patchwork of people and their imperfections is what it’s all about. I put value on the fact that my older daughter has a sister with DS. I believe that it gives her a broader, enriched perspective on the world.
The biggest worry I’d have for my older daughter as a sibling of a person with DS, in fact, is that when my husband and I are gone, she’ll be the only one who cares. Not because Mary is a burden per se, but because of the worry that society at large will see people with DS thus.
In general, my experience of people’s reaction to Mary is largely positive — though we won’t be going on holiday to Iceland, where 100pc of prenatal diagnoses of DS lead to termination, or Denmark, where it was publicly welcomed that DS will no longer occur in the population within 20 years. I believe that most people, when they meet Mary, regard her positively and experience her positively, but that’s because when a person is in front of you, you don’t just see the DS, you see them.
When you see a piece of paper with a prenatal diagnosis of DS and then a list of all the bad things that can happen with DS, you do not see the person. And I accept that the people who believe that termination of a pregnancy with a diagnosis of DS are not saying that my child shouldn’t be here. They don’t wish her dead, but they don’t think there should be any more like her, and, to me, and I accept that I am biased, that seems to be because people with DS are a burden that we, as a society, don’t want to bear.
But where do you stop with that?
In Phillips’s film, she read through the reading material given to parents who have received a prenatal diagnosis of DS. It lists every possible health issue and intellectual issue but, as Phillips pointed out, it offers no good stuff. It does not account for the child or adult with DS as a person, a family member, a part of the community at large. As she observed, if her medical issues and inherited family conditions were listed off, they would in no way amount to the summation of who she is.
Expectant parents are not told the good stuff — this was what Phillips explored — and if you are presented with only the bad, then why would you choose to have this child? In the UK, you can terminate up to full-term with a diagnosis of DS.
When my baby was born and we were told she had DS, I was deranged on painkillers, still on an operating table, spinning in a vortex of shock. I have flashes of guilt about the things I thought about my baby in those first minutes, and hours.
How I ration that guilt to only flashes is by separating out the reaction to the DS from my feelings for my baby, now my big, school-going girl. What I felt in that period was about DS and, specifically, preconceptions about DS. Which is to say, all the bad stuff.
But when it’s your baby looking up at you, yes, through almond-shaped eyes that you hadn’t expected, it’s different. The bad stuff becomes muddled up in the love and the hopes and dreams and then her achievements and efforts and, quite aside from the DS stuff, all the usual dramas of bringing up a child.
The love isn’t there on the page of possible complications. Or the rewards, or the fact that I believe that knowing Mary has tweaked the minds of our family in ways that we can never thank her for enough. It’s not that she’s “so full of love” or “so affectionate” or any of the other trite stuff you get about kids with DS; it’s the realisation that none of human life is perfect or follows rules or a planned path or a straight course. And you’d be mad and mistaken to imagine otherwise.
Watching Sally Phillips’s documentary last week, you could have thought that the issue was Down syndrome, or you could have thought it was the issue of abortion; but really it was about society, about people, about who we want to be.
This is summed up in what she said to Dr Chitty. Is this who we want to be? Do we really want to be a world that rejects those who need more? And it’s not just about DS. It is now, but in 10 years’ time, it could be about screening for autism, for blindness. It could be about screening DNA for inherited mental illness, a tendency to eating disorders, alcoholism. And once we get going with the kind of people we don’t want to be burdened with, or don’t want to move among us, then where does it stop?
In advance of Phillips’s film, I read several pieces and interviews with her in the English newspapers. In one, Jane Fisher, director of Antenatal Results and Choices, an organisation that supports parents affected by foetal screening and its consequences, said that she found Phillips’s film “not at all helpful”. Fisher, who appeared in the film, said that what it did was to make “more difficult” the decision-making process for parents given a prenatal diagnosis.
Now, to my mind, that difficulty is no harm. To my mind, Phillips not only presented the counterargument to the down sides of having a child with DS, but pointed out that once we open the Pandora’s Box of assessing what is desirable and undesirable in future generations, it’s going to be hard to stop.
Of Down syndrome, though, Jane Fisher brought it back to the “who will love my children” trump card.
“The big conflict for women is the adult the child [with DS] will be 20 or 30 years down the line,” she said. “For most women, that is the bit that tips them to end the pregnancy. An adult who will be, at best, vulnerable.”
Vulnerable. You know what? I’m pretty vulnerable. You might be, too, though you try not to let on. Your typical kids might be and if they’re not, they might become so at some point. Maybe because they have a disability. Maybe because they acquire a disability — or you do, and they have to mind you. Or because they’re shy, or have addiction tendencies, or violent tendencies, or self-hatred tendencies, or maybe because the world just doesn’t get them or maybe because they’re just not very nice.
We can accommodate them, though, can’t we? We have hearts in which we can make room and have compassion and give a little. And, yes, some will require more than others, but I would hope that we have it in us to embrace them.
Yeah, I would say that, because my child and my family wears its vulnerability more obviously. But I wouldn’t change it. Not a bit.
‘I know what my decision would have been had we been given a diagnosis of DS in my second pregnancy’ ‘The worry I’d have for my older daughter as a sibling of a person with DS is that when we’re gone she’ll be the only one who cares’