Dear Emmerdale Viewer,
The Emmerdale Production Office aren’t reading my emails – that much is clear from the token copy-and-paste response they sent that addressed precisely none of the points I raised: the exact same response, word-for-word, that they seem to have sent to every person who has contacted them to express concerns about the upcoming storyline in which Laurel and Jai seek an abortion after being told that their unborn baby will have Down’s Syndrome. The wording of it could have come straight from the website of Antenatal Results and Choices (ARC), an organisation which seems to have been Emmerdale’s only advisors on this storyline and their sole source of research material. This fact alone is a cause for concern.
No, it seems that the storyline is a done deal, filmed and in the can, and it will go ahead as is, despite the concerns of the Down’s Syndrome community, so I’ve given up talking to them. Now I want to talk to you, Gentle Viewer, if I may beg your indulgence for a few minutes, to explain what all the fuss is about, because you might be wondering why some of us are getting ourselves into a tizz about this. After all, you might say, there are people out there going through this dilemma for real every day – don’t they deserve to have their story told?
That is certainly what the Production Office at Emmerdale think, their pro forma email states: ‘we think it is an important one to tell’ and ‘will do much to break the silence around this sensitive topic’.
The so-called silence around this subject is actually deafeningly noisy if you take the time to listen – this is a story that has been told time and again, in the tabloid press, in radio plays, on TV, on social media, usually at full volume with big, black, shouty headlines such as ‘Why I HAD to abort my baby’. In all of these pieces Down’s Syndrome is the villain, as women detail all the ways that this ‘devastating’ condition would render their lives unliveable, how their ‘much wanted’ child was destined for an existence of physical pain and torment, and how their decision was ‘an act of love’. Emmerdale is not launching a ground-breaking story here, they are simply treading a very well-worn and familiar path and stand in grave danger of further deepening the negative stereotypes and anti-Down’s Syndrome biases that are already firmly embedded. It is these entrenched negative perceptions that are behind the c. 90% termination rate for foetuses found to have Down’s Syndrome.
That 90% figure should tell you that, far from being stigmatised, abortion is the accepted norm when it comes to a prenatal diagnosis of Down’s Syndrome. Arc are oddly insistent on telling women that they will be stigmatised and silenced for choosing abortion, but, in my experience of prenatal testing and antenatal care (and that of many other parents of children with Down’s syndrome that I have been in contact with), there is far more stigma attached to choosing to continue with a pregnancy in which Down’s Syndrome has been identified. Prenatal screening technology, which should be a tool used to give women choice, is instead being used to facilitate a state-sponsored detect and destroy mission.
Right at the start of the process, at the booking visit, some women report being told that the screening tests are ‘required’, leaving them with the impression that such testing is mandatory, when it is, in fact, optional. A positive result is delivered in the same manner as a diagnosis of terminal cancer, peppered with phrases such as ‘I’m so sorry’ and ‘It’s bad news, I’m afraid; a worst-case-scenario picture of Down’s Syndrome is presented as an inevitable and certain fact, rather than a list of possibilities not all of which will come true. Swift termination is always the presumed outcome.
The fact that there is a National Pathway of Care in place for women choosing termination, but no such National Pathway for women choosing to continue pregnancy speaks volumes. Some women report that they received an appointment for an abortion that they had never requested, booked automatically and immediately after the news was delivered, without their say-so, when all they wanted to do at that stage was research and consider their options.
The support agency that the NHS refers women to in either case is Antenatal Results and Choices (ARC), and organisation formerly known as Support Around Termination for Abnormality, and who have listed among their corporate partners several companies who provide prenatal screening test kits. Though they claim to support both choices equally, the resources on their website for women wishing to continue are woefully inadequate compared to those for women wishing to terminate. Many of those who have called their helpline looking for sources of support for continuing a pregnancy following a prenatal diagnosis of Down’s Syndrome report that no attempt was made to signpost them to relevant organisations such as the Down’s Syndrome Association. This was my experience: the call handler made no pretence of offering support, instead she used the term ‘life sentence’ to describe what I would experience if I chose to go ahead and bring a child with Down’s into the world.
In the BBC documentary ‘AWorld Without Down’s’ ARC spokesperson Jane Fischer was asked what ARC would say to a parent calling them for support after a diagnosis of Down’s Syndrome. She says (and I quote):
‘We’re not going to say “you’ll be able to cope”. We say: “Well, how worried are you? Do you feel you can continue this pregnancy and deal with that? Can you deal with that level of uncertainty or do you feel the need to end the pregnancy.”’
In other words, the ARC call handler would subtly plant the idea that they wouldn’t be able to cope, and then leap straight to the idea of termination. So much for non-directive care.
Women who decided to continue with the pregnancy regardless report that at every subsequent antenatal appointment they were asked again and again if they if they would like to change their minds and have a termination instead. In health trusts where termination for Down’s Syndrome is allowed up to birth, some mothers relate how they arrived for induction of labour with a bag full of nappies and baby clothes, only to be offered a termination yet again: ‘it’s not too late to deal with it’ they were told. Some were forced to listen to graphic descriptions of the procedures necessary for late-term abortions, even though they had emphatically stated that they intended to continue with the pregnancy. Some of these women are still suffering clinical Post Traumatic Stress Disorder years after their children were born because of the way they were treated.
When care is so directive, is it any wonder that around 90% of people receiving a prenatal diagnosis of Down’s Syndrome choose to terminate in the end?
The idea that termination is the best option doesn’t end when the child is born. Perfect strangers, seeing you with your child in public and striking up a conversation, will think nothing of suddenly asking you; ‘didn’t you have the test? The clear implication being that if you had known before your child was born, you would have terminated the pregnancy.
As I said, the true stigma lies with continuing a pregnancy after prenatal diagnosis, not in ending it. If Emmerdale want to tackle an important untold story surrounding prenatal screening and abortion, if they want to ‘break the silence’ then this is the story that they need to be telling. If they want to break new ground they need to explore why, 25 years after the Disability Discrimination Act first came into force, so many people still think that it is better to abort a disabled baby than allow it to live; they need to explore the attitudes and pressures that would cause a couple like Laurel and Jai, who see their neighbours who have a child with Down’s Syndrome living a full and happy life, and who hear them say that they ‘wouldn’t change a thing’, would still choose to abort a hitherto wanted child on the grounds that it, too, would have Down’s Syndrome.
The Emmerdale production office declared that after speaking to ARC it was heartbroken ‘to hear how many of them [women who had chosen to terminate] felt unable to talk about what they had gone through for fear of being shamed. But multiple studies have shown that the silence is self-imposed, that ‘avoiding disclosing or selectively disclosing the event to others’ is a coping strategy adopted by women choosing termination for medical reasons: a meta-analysis of these studies, entitled ‘The Travesty of Choosing after Positive Prenatal Diagnosis’ was published in the Journal of Obstetric, Gynaecologic, & Neonatal Nursing. Other coping strategies include; denying the personhood of the baby, adopting a stance of moral relativity (‘it was an act of love’), and transferring agency for the choice to others (blaming the disability itself, hence the acute demonization of Down’s Syndrome or other condition when they do tell their story).
Women who have chosen termination are often held to be more objective than those who have a living child with Down’s Syndrome, which may be why the stories of the women who chose to continue struggle to get a hearing; yet the studies mentioned above appear to demonstrate that those who chose abortion are at least as biased, if not more so. But, time and again, they are allowed to shout us down.
When the roll-out of NIPT across the NHS was being planned, stakeholders were invited to contribute to the information pamphlets that would be given out to expectant mothers. Among the stakeholder groups were people with Down’s Syndrome and their families and those who had chosen to terminate following a positive screening test. Information was prepared that all parties agreed was a fair and accurate representation of Down’s Syndrome in the 21st Century. All parties agreed except one, that is – the group who had chosen to terminate said that the information was far too positive and insisted that it must be changed to reflect their more negative outlook. And they got their way. Accuracy was sacrificed in order to appease the feelings of a group of people who had chosen to have no personal experience of Down’s Syndrome, and in all likelihood held a negative bias. But the pro-disability-abortion lobby, and organisations like ARC, have a very loud and powerful voice which few would dare to contradict for fear of being branded anti-feminist, anti-woman, or misogynistic dinosaurs.
Indeed, we are so indoctrinated into the mantra of ‘a woman’s right to choose’ meaning her right to have an abortion, that we are in danger of forgetting what the word ‘choose’ really means, or that it also includes a woman’s right not to have an abortion if she doesn’t want to, even if the circumstances of her pregnancy are considered less than ideal by society. An enforced choice, such as that likely to be produced by directive care and the lack of a recognised national pathway for continuing a pregnancy following a prenatal diagnosis, is no choice at all. We are in danger of allowing the doctrine of ‘women’s choice’ to metamorphose into a means by which women’s choices may be controlled or limited. We lose sight of the fact that in a country like the UK, where abortion is permitted but regulated by law, the circumstances under which women may choose to have an abortion or not to have one are dictated to us by the ableist patriarchy who predominate in our law-making institutions. And ARC are a willing tool of the patriarchy, and the worst kind of misogynists – women who pretend to be fighting for a woman’s right to choose but all the while are working to limit that very same right by bending public attitudes so that a ‘woman’s right to choose’ is corrupted to become ‘a woman’s duty to choose one particular socially-sanctioned option’.
ARC and their corporate partners must have been rubbing their hands with glee when Emmerdale approached them, thinking of all that free subliminal advertising. Which leads me to wonder if perhaps it was ARC who approached Emmerdale to ask them to run a termination storyline to ‘balance’ the positive storyline featuring Leo, the little boy with Down’s Syndrome.
When I emailed the production office I did not demand that they bin the storyline completely, I simply asked them to consider making some changes to it that would reflect the reality of Down’s Syndrome screening and termination, to explore some of the important issues outlined above that no one, most especially ARC, wants to talk about. But it seems that is unlikely to happen – they will toe the ARC party line throughout, and present Down’s Syndrome as a disaster to be avoided at all costs.
If Emmerdale run this storyline unedited, they will be doing a great disservice both to women and to people with Down’s Syndrome. The script will become a tacit endorsement of the discrimination that starts even before birth for people with the condition. When we allow abortion to become the accepted, automatic, default response to a prenatal diagnosis of Down’s Syndrome, then we will see a deepening of the stigma for women choosing to continue, and a deepening of the stigmatisation of people with Down’s Syndrome just for existing. We pave the way for the withdrawal of support, both psychological and material, for these women, and the withdrawal of support for people living with DS, as it will be deemed unnecessary. Ultimately we will see the erosion of their right to life, as the world comes to believe that they should be aborted, and the erosion of a woman’s right to choose, because one of the choices will become untenable.
There are adults with Down’s Syndrome who watch Emmerdale. How would the production office justify this storyline to them? I don’t suppose it ever occurred to them that they would have to. And therein, perhaps, lies the problem.
To those who got this far, thank you very much for reading. I hope I have given you some food for thought to chew over while you watch your favourite soap.
#DownSyndrome #PrenatalScreening #PrenatalDiagnosis #Abortion #TFMR #Emmerdale #EducatingEmmerdale #MychoiceHearMyVoice