Yesterday BBC Radio 4 aired the autobiographical play 19 Weeks by Emily Steel, in which she explores her first-hand experience of late termination of pregnancy following a diagnosis of Down’s Syndrome. Comments in interviews, as well as the content and construction of the of the play itself suggest her primary purpose in writing and staging this show is to break the silence around late-term abortion and to challenge the stigma surrounding it. The play is presented as a series of monologues, and when staged live, as it has been at Fringe Festivals in Adelaide, Perth and Melbourne, it is performed in hotel swimming pools.
Just over ten years ago I sat in a hotel swimming pool – in Durham, as it happens – or rather beside the pool on a lounger, reading a book, my swimming costume stretched tightly over the pronounced curve of my belly. You see, I too was then 19 weeks pregnant with a child who has Down’s Syndrome.
My eyes, apparently fixed on the page, poring over every word, were, in fact, idle and unfocussed; my mind was turned inward, attentive to every tiny flutter in my womb, each one a bittersweet prod recalling to mind the fact that I might have only four days left with my precious child, because I had only four days to go until my 20-week scan, when the doctor would decide whether my unborn child was considered fit to live.
I’d already been pressurised into having a nuchal scan that I didn’t want. When that revealed a 1-in-12 chance that my baby would have Down’s I was told that I would have to undergo an amniocentesis. The appointment was booked for me, there and then. I was neither offered nor signposted to any further information on the condition, or any other support.
I refused the amnio. My consultant was taken aback, and, assuming my decision was prompted by a fear of miscarrying a healthy baby as a result of the procedure, she said that she would arrange for my twenty-week scan to be performed by a consultant sonographer, who would conduct a thorough examination which should detect any of the ‘soft markers’ that betrayed abnormality. That way we could discover whether termination was necessary without risking a healthy foetus. She just couldn’t get her head around the idea that I wanted to continue my pregnancy regardless of any diagnosis.
While my husband swam I stared blindly at my book, wondering if, and how, I could avoid attending that scan. With my obstetric history, missing a check-up would be a risky and irresponsible thing to do, for both me and my unborn child. But my fear was that if any evidence was seen that suggested my baby had Down’s Syndrome, I would be coerced into having an abortion. Such was the persistence of the idea that abortion was the solution to Down’s Syndrome in all the advice that my consultant gave me that, in my vulnerable and distressed state, I was afraid she might have that power over me, that I had inadvertently stepped into some dystopian reproductive nightmare. It took every shred of my will to overcome the palpable fight-or-flight instinct that made me want to run and hide until my baby was safely born and out of harm’s way.
And nobody understood. Nobody.
No one told me that I was doing the right thing. No one took my hand and comforted me and said that I should not feel guilty because I was doing what was best under the circumstances. No one held me when I cried. They rolled their eyes and turned away. They thought I was crazy and some said so. They urged me, earnestly, to stop being sentimental and to do the right thing, the sensible thing, the thing any decent, responsible member of society would do, the thing Emily Steel did: and then we could brush the whole sorry mess under the carpet and get on with our comfortable lives and pretend nothing had happened. Whereas Emily hit her belly when her baby kicked, I cradled mine with both arms, shielding my baby from a world that didn’t seem to want him in it. They say no man is an island, but this woman was an island then, battered on all sides by the storm of public opinion.
Now, that is what isolation looks like. That is what stigma looks like.
There is no need for anyone to challenge the stigma surrounding late-term abortion, because there is NO stigma attached to late-term abortion for Down’s Syndrome. Society accepts that it is the sensible, the responsible, the right, thing to do. That is why in Australia and in the UK, and in many other countries, the termination rate following a prenatal diagnosis of Down’s Syndrome is 90%. It is by far the majority solution. It is, you might say, the ‘done thing’.
The real stigma is directed towards any woman, any parent, who wants to continue with the pregnancy regardless and give birth, give life, to their child with Down’s. It is manifest in the repeated questioning of mothers who are reminded again and again during their antenatal care that it is not too late to reconsider, change their minds, and terminate, even well beyond 19 weeks, even though they have expressly stated that they wish to continue the pregnancy; it is manifest in the question ‘do you want us to do everything we can for your baby’ asked of the mothers who go into hospital to be induced, or have a c-section, because of complications; and in the ‘I’m sorry’ offered to new mothers instead of ‘congratulations’, and in the impertinent presumption of strangers who think it is OK to ask ‘didn’t you have the test?’.
In the eyes of the public, women like Steel, who choose to abort, are viewed with great sympathy, deemed to have suffered a necessary tragedy caused by the scourge of Down’s Syndrome. While their choice IS a tragedy, it is not caused by Down’s syndrome. It is caused by their own feelings about, and reaction to, Down’s syndrome.
In her play, Steel makes her feelings about Down’s Syndrome, those who have it, and those who are parents of people who have it, abundantly clear; she presents an uninformed and wholly inaccurate picture of the condition, and of what it is like to be the parent of a child with it. She presents people with Down’s in familiar and stereotypical ways: always happy, but sick, dependent, and burdensome. Parents are sad victims and selfless martyrs. All the characters except herself are ‘flat’ – not fully rounded humans, but one-dimensional cardboard cut-outs standing in for the reality she does not acknowledge. Perhaps because she does not want to. She even tries to draw a parallel between Down’s and another completely unrelated and vastly different condition, Friedrich’s Ataxia, which she also presents in unflattering caricature. The entire work is just one ableist excuse after another.
The law grants Emily Steel (and other women) the right to terminate any pregnancy if that is what she wants to do. But that does NOT give her the moral right to publicly present a false picture of Down’s Syndrome, or to dehumanise and stigmatise the people who have it (and their parents) in order to justify her choice to her audience. This is a morally repugnant thing to do, because what she is doing is justfying the killing of a person with Down’s Syndrome, and her words may influence others. In signalling to her audience that this is a morally acceptable choice she is advocating selective abortion for disability. This is discrimination. It is eugenics. The killing of a group of people based on a shared genetic characteristic is also one of the definitions of genocide. 19 Weeks is a morally repugnant work.
She made her choice and must take responsibility for it. She must stop blaming Down’s Syndrome for her choice, her tragedy, and examine honestly where the blame really lies – with her own reaction to Down’s Syndrome and the misconceptions, the negative stereotypes and the inbuilt prejudices that persist in society, that cause people to react to the diagnosis with such misplaced revulsion and fear.
In choosing to perpetuate these negativities in her play, Steel has not challenged stigma, she has deepened it; she has not broken any silences, she had added another layer of soundproofing over those of us who are trying to shout the truth about Down’s Syndrome to the world. She has nibbled away just a little bit more from the edges of true reproductive autonomy and freedom.
As long as the falsely bleak picture and damning stereotypes surrounding Down’s Syndrome persist in society, perpetuated by Emily Steel and others, then more and more parents will be forced to terminate wanted pregnancies because society does not allow them to believe that there is any other option, when a prenatal diagnosis of Down’s Syndrome has been made. They will then have to endure, unnecessarily, the lifelong grief of losing a child –a child they could have raised in love and hope and joy — because society discouraged them from seeing their foetus with Down’s Syndrome as a baby with potential and abilities and a future.
While you, Ms. Steel, are bravely ‘shouting your abortion’ – a socially-sanctioned course of action supported by 90% of the population, the other 10% are quietly screwing up the huge amount of real courage it takes to defy an entire society and its inbuilt prejudices. Do you know how much courage this takes? I do. And so do my brothers and sisters in the Down’s Syndrome family. We do it every day: not with bitterness and grief, but with love and joy and all the guts and strength those driving forces bring.
If you would like further information on Down’s Syndrome, visit https://positiveaboutdownsyndrome.co.uk a website by parents for parents and parents-to-be offering information based on real-life experience,
The Down’s Syndrome Association http://www.downs-syndrome.org.uk/