Today I received the following response to last night’s email to the Editorial Team at Emmerdale:
Dear (insert name here),
Thank you for your email regarding our upcoming storyline about Laurel and Jai’s difficult decision to terminate their pregnancy.
We know this is a story that will provoke strong reactions from some of our viewers, but we feel it is an important one to tell.
Our research team worked very carefully with the charity ARC – Antenatal and Choices, to ensure that we could tell this story accurately and responsibly. Around 5000 parents a year find out that their baby has a genetic or physical condition and make the painful decision to terminate the pregnancy. After speaking to ARC and to couples who went through this as well as reading case studies, it was heartbreaking to learn how many of them felt unable to talk about what they had gone through for fear of being shamed.
Jane Fisher Director of ARC said about the story ‘We have over 30 years’ experience of supporting women and their partners through the painful circumstances of ending a wanted pregnancy after a prenatal diagnosis. Thousands of parents go through this every year but it is rarely spoken about. This can lead to bereaved parents feeling very isolated in their grief. We are really pleased that such a popular drama as Emmerdale is tackling this story in such an empathetic and thoughtful way. I have been particularly impressed by how they have valued input from us to help make sure it is as true as possible to the complex reality for couples. It won’t make for easy viewing but will do much to break the silence around this sensitive topic.’
As I’m sure you are aware we have a young actor with Downs Syndrome in Emmerdale who plays Leo. You will also see in the episode that we hear from Rhona and Marlon (Leo’s parents) about the happiness Leo brings them and how they wouldn’t change a thing about him and are glad they made the decision to continue their pregnancy.
Stories like this are always a balancing act to make sure all voices are heard and that is what we have done with this one. This isn’t a story about what is right or wrong, it’s a story about a person’s right to choose without judgement, but instead support from their family and friends.
Thank you for taking the time to contact us.
The Emmerdale Editorial Office
And I replied thus:
Dear Emmerdale Editorial Office,
Thank you for your very prompt response to my email.
Termination of pregnancy following a prenatal diagnosis is an extremely traumatic experience. I agree that it is an important story to tell, but more important still is HOW the story is told. We must be very careful not to portray termination as a way of avoiding the pain and grief that supposedly come with having a disabled child — it is not a consequence-free solution to the ‘problem’ of disability. It comes with profound consequences for maternal mental health, and the trauma experienced must not be glossed over in a couple of episodes. It is something that has implications for the rest of a woman’s life. There may be viewers who watch Laurel and Jai’s storyline who will later find themselves experiencing prenatal diagnosis — and what they see on your programme may influence their perceptions, of the testing process, of abortion for medical reasons, and of Down’s Syndrome itself. Which leads me to ask why you chose to feature Down’s Syndrome as the reason for Laurel and Jai to seek an abortion? It is only one of many conditions for which a couple may be offered a termination, so I ask again, why choose Down’s Syndrome?
You say it was heartbreaking to hear from ARC how many women had felt unable to talk about their experience of termination for medical abnormality due to the fear of being shamed. It is my experience that there is little to no shame or stigma attached to abortion carried out for medical reasons — most people seem to be understanding about it, seeing it as the ‘best’ or ‘kindest’ or most sensible thing to do under the circumstances. I have found that there is more stigma in choosing to continue with a pregnancy following a positive prenatal diagnosis, from the medical profession, from friends and family, even from random strangers sometimes. My own mother refused to speak to me for many, many weeks when I was pregnant because I WOULDN’T consider having a termination. I have been asked in the supermarket, in front of my son, why I didn’t ‘have the test’ — the clear assumption being that if I had known he would have Down’s Syndrome I would have terminated the pregnancy. Imagine being asked to justify your beloved child’s life by a stranger, to his face. This is an attitude which will only be deepened and further entrenched by soap storylines like the one you are proposing to run, no matter how sensitively you try to handle it. Your script will become a tacit endorsement of the discrimination that starts even before birth for people with Down’s Syndrome. An interesting meta-analysis published in the Journal of Obstetric, Gynaecologic & Neonatal Nursing, entitled ‘The Travesty of Choosing after Positive Prenatal Diagnosis’ seems to show that ‘avoiding disclosing or selectively disclosing the event to others’ is adopted as a coping strategy by women choosing termination of pregnancy for medical reasons: the silence surrounding the subject is a self-generated one rather than one imposed upon women by others. And yet ARC in particular seem oddly keen to impress upon women the idea that society will seek to shame them for their choices. The very high termination rates following a positive prenatal diagnosis of Down’s Syndrome suggest that abortion is, in fact, is the accepted norm. Medical staff can’t offer it quick enough, no shame, no judgment, rather you will be commended as ‘sensible’.
It troubles me that you seem to have relied so heavily on ARC for your research — they are not an unbiased organisation despite their assurances that they support all choices equally. As I am sure you are aware they were formally known as SAFTA (an acronym which stands, I think, for Support Around Termination for Abnormality). I wish they still were because it more accurately describes their area of expertise. There are many conditions for which a couple or a woman may choose termination, many of them far more devastating in their effects or implications than Down’s Syndrome, and support for those undergoing this experience is vital. But to pretend that they are impartial is misleading. They have in the past received funding from organisations with a vested interest in the sales of Non-invasive Prenatal Testing kits. They have a distinct anti-disability bias and the information they provide on Down’s Syndrome is negatively-weighted, inaccurate and inadequate. I know this from personal experience. I know also that when I contacted them to look for sources of support for continuing a pregnancy there was no attempt made to signpost me anywhere, only an attempt to get me to reconsider — I seem to recall the term ‘life sentence’ being used. I am not the only woman to have had a negative experience at their hands. Luckily for me I don’t scare easily, nor am I easily dissuaded once I have decided on a course of action — or I dread to think what the consequences of seeking their advice might have been for me and my son. I have never met Jayne Fischer in person, though I have exchanged tweets with her on occasion and have seen and heard her interviewed on TV and radio. She comes across as very anti-disability. An example of this can be found in the BBC documentary ‘A World Without Down’s’ in which she is interviewed by actor, comedian and writer, Sally Philips.
The reasons WHY so many women and couples choose to terminate after a prenatal diagnosis of Down’s Syndrome is something that needs to be explored, the fact that there is in place a recognised pathway of support for women choosing termination, but NO pathway at all for women choosing to continue, needs to be explored, the gaslighting women face when they express a wish to continue an affected pregnancy, the sustained and repeated pressure to reconsider their decision and terminate, needs to be explored. The consequences of what might happen to a woman who capitulates to this pressure against her better judgement also needs to be explored. When we allow abortion to become the accepted, automatic, default response to a prenatal diagnosis of Down’s Syndrome, then we begin to see a deepening of the stigma for women choosing to continue, and the stigmatisation of people with DS simply 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 the condition, as it will be deemed unnecessary. Ultimately we will see the erosion of a woman’s right to choose, because one of the choices will become untenable — and a choice where there is only one option is no choice at all.
We in the Down’s Syndrome community have been waving our banners from the rooftops on these issues, but few take notice of us, because these issues do not affect them. We need someone bigger and more glamorous to stand in the trench and shout for us. You could be that voice. I am not asking you to bin the storyline completely, but I really feel that if you want to do the topic true justice you should consider editing it to address the issues I, and others, have been raising.
Offended of Tunbridge Wells (or similar).
How did I do?
Update: a couple of hours later, I sent the following, additional reply, just in case I hadn’t made my point clear enough in the first one:
Dear Emmerdale Editorial Office,
One thing I fear I may not have made clear in my previous reply to you is how very important it is that you do not inadvertently demonise Down’s Syndrome in your attempt to show how Laurel and Jai come to, and justify to themselves, their decision to terminate the pregnancy. It is imperative that viewers are not given the impression that the couple HAD to terminate their pregnancy BECAUSE of Down’s Syndrome. Down’s Syndrome is not the enemy here. The couple do not ‘lose’ their baby to it, they ‘lose’ their baby by choice – a choice most likely driven by fear. If you want to depict the experience of going through the prenatal testing and diagnosis process accurately, then you absolutely must address the issue of how a couple’s fears can be exacerbated by the way in which they are treated during their antenatal care, and how this can influence their decision to terminate. Your research really should include testimony from parents who have decided to continue in order to understand in full all the issues surrounding prenatal testing and diagnosis, and the intrinsic and unconscious bias that is often present in the way testing and termination are presented to expectant parents.