Actually, thank you Emmerdale…

(Edited stats and added links wit a few sentences)

Not for the first time, and most likely not for the last time either: going rogue, going indie, going disrupter about the Emmerdale storyline…

Just in case you didn’t know already, having a child with Down syndrome may automatically make you a member of the Down syndrome community but it sure doesn’t mean that we all agree on all things Down syndrome-related. It would be awesome if we did but truth be told, the only one thing we all absolutely agree on is that we love our child to death.

So, I was recently gently poked about why I had stopped posting about that soap opera storyline where a couple eventually decides to terminate a pregnancy upon a prenatal diagnosis of Down syndrome, and whether I had signed the petition set up to try and stop it from being aired. 

The number 1 reason I have stopped posting about it is because I’ve been extremely focused with enabling my daughter’s dream of acting right in the midst of it all. She’s 21, she has Down syndrome and her modelling/acting career keep me very busy indeed. We were abroad filming an episode of a new ITV crime/drama series: Professor T. We’re not done just yet. Reason number 2 is that professionally, our team is working very hard to get the first issue of our much anticipated magazine perfect, we’ve only got a few more days! Number 3, well, illness and an unexpected hospital stay may have got in the way.

Now that I’ve justified myself, not that I had to, I can tell you why I’m so glad I was forced to take a step back and ponder.

A bit of background information: those who know me are aware that I’ve been advocating for people with Down syndrome for a very long time. I write regularly (or try to) about Down syndrome and disability in my blog www.troynize.com . As Kathleen’s mother, the most difficult thing for me, by far, hasn’t been to parent her all these years, no, it’s the day I had to try and explain to her what NIPT was and the options women have with the information, just before we both delivered a speech at the United Nations. 4 years ago. She was 17. I asked for help, here and there, from support groups, from national organisations, but basically, I was on my own. You can read why I had to bring her up to speed in a dash here: https://www.facebook.com/denise.humberstone/posts/10155948159319126

To start with, no, I haven’t signed the petition. A lot of the wording didn’t sit right with me, myself, moi, je, I, personally, in my opinion. I’ve never been a big believer in censorship, I’m more about educating no matter how painstakingly slow it can be.

When I first heard about the storyline, I jumped and reacted instinctively just like any mother does when her child is being hurt by anyone.

And then, as I said, I had to attend to other more pressing matters.

My fingers have been itching ever since and my take on it has shifted considerably!

I managed to watch the trailer clip on Lorraine and listened to the actress who plays the character who decides to terminate. The gist of it was “bear with us, it’s not all what it seems.“

And I found out there was a character with Down syndrome on the show, where the storyline was also a prenatal diagnosis but where the parents decided to keep their baby. He’s been on the show for the past 9 years, depicting what it can be like for a family to have a member with the condition.

And then I did some reading from women who decide to terminate, some did so without much contemporary knowledge about the condition, some with a bit of personal experience, some others with extensive experience of it.

Look, there’s no denying the high termination rate when it comes to Down syndrome (between 86% to 95% depending on the source) is simply baffling and totally illogical:  no matter how prolific and expert we’ve become at portraying  our children as very able and talented and loved to the mainstream population on each and every social media platform, no matter how many  statistics we shove in everyone’s faces proving that our kids don’t suffer, that they’re happy with who they are and look like, that their families not only love them as much as their other children but are not less happy than mainstream families, the  termination rate keeps climbing, steadily, like a bulldozer… (I’ve already explained in great details what I believe are the root causes of this sad state of affairs in “Down Syndrome: What Are We so Afraid of?”( https://troynize.com/2017/12/17/down-syndrome-what-are-we-really-afraid-of/)

Apparently, there are about 4,000 women in the UK who go through this process every year (terminations on Ground E: “that there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”) following the prenatal diagnosis of one condition or the other. Chromosomal variances account for about 30% of which Down syndrome around 750 as it is the most commonly naturally occurring chromosomal disorder and the easiest and cheapest to spot. I guess Emmerdale picked Down syndrome as it is the most known condition from the public at large (or at least the one the public at large think they know the most about). Another diagnosis with a life-limiting condition would have been less relevant as it is more understandable to then terminate. They could have then decided to not name the condition, but how feasible is that in a storyline? Wouldn’t make sense and would make for a bland script. To be honest, whatever condition they would have picked would have hurt the community of the concerned condition. So, no, I don’t wish they would have passed the buck to another community.

Down syndrome, on the other hand, makes perfect sense. We need to understand why oh why 9 out of 10 women go that route in spite of all the positivity and great stats! Something doesn’t tally, indeed! It could simply be ableism, and I’m not sure there’s a cure for that…

Be that as it may, to me, it’s a great opportunity to educate. Let’s talk about the mammoth in the room. From whatever angle!

For that specific storyline, the soap opera did their research on those women and their thought process. Finally!! There’s no Emmerfail, or Emmerdale didn’t do their research about what it’s like to have a child with Down syndrome, they’ve already covered that angle, that’s not what it’s about and it’s just as important to talk it out in the open. When Sally Phillips’ amazing documentary “A World Without Down Syndrome” was aired, 4 years ago, it featured ARC and Jane Fisher, it also featured Sally interviewing a woman who said she had done all her research but decided to terminate and described how it was done. It was a tough watch. The documentary was hailed and great debates ensued. Nobody cried out treason and shame for perpetuating prejudice towards people with Down syndrome. 

This is not even a documentary, it’s a soap opera, not a guideline on what women should do if they find themselves in that situation. Some people say women who are currently pregnant and watch the show might be swayed into termination! Really? I found that offensive, to be honest. Is that all the credit you give to the decision making process of women faced with such a dilemma?

Why do i think it’s a good storyline:

1/ If they show an ideal delivery of probabilities and diagnosis by the right medical professional using the right language, we can say that is not how it happens and that is one of the reasons for high termination. Thank you, Emmerdale!

2/ If they show a realistic delivery of probabilities and diagnosis using the wrong language and leading expectant parents towards termination, we can say that is exactly what’s happening and that’s again another reason for high termination. Cheers Emmerdale!

3/ When the couple are shown to debate which avenue they should take, I do strongly believe they should bring up what every other mainstream parents do when in that situation, what nearly every single one of us thought when we were presented with the news: what about the future of my child, how will it affect their siblings, how will it affect our marriage, how will it affect our careers, etc… They are all very real and common concerns AT THAT POINT IN TIME. Easy for us to know that’s all irrelevant, we are now in the know. Most parents who choose termination do so thinking it is the panacea. Are you able to take your pregnant self back in time and meeting a seasoned parent of a child with Down syndrome belittling you and shouting at you and judging you for daring to even voice these concerns? I can, I would have shut them off, for sure. I wouldn’t dream of telling anybody what to do. I’m the only one to ever walk in my own shoes and nobody tells me what to do! I don’t know about you but I really don’t want my own children or relatives or friends to think they can’t talk to me about prenatal diagnosis when the time comes for fear of being shunned by me should they decide to terminate! I would want them to know that I would support them no matter what their decision is. I would never equate their decision to terminate with them believing my daughter with Down syndrome has no worth or that my life is not enviable. What kind of maths is that? Am I the only one to think like this? I hope not. So, with each episode, another opportunity to raise awareness , debunk myths, and show our lived experience. Thumbs up, Emmerdale!

4/ The mother is over 40. Yes, again. Great point for us to remind people that although there’s a higher chance for women to have a child with Down syndrome the older they are, most babies with Down syndrome are born to young mothers simply because more young mothers get pregnant. But the fact that Laurel is over 40 brings more worries into the mix. The other very real elephant in the room: who will look after my child when I’m gone? Another great constructive debate to address that very real worry in my humble opinion!

5/ One of the main concerns that was voiced was about the impact the storyline can have on people who have Down syndrome and watch the show. If your child with Down syndrome is old enough to watch Emmerdale and able enough to understand what is going on, again, what a perfect opportunity to tell them the truth, tactfully. The reality is that prenatal testing is not going anywhere ever, which means that debates about the worth of our children are here to stay, and there’s no way on earth you can shield them from it, and it’s better they learn about it from you than through leafing through a magazine or watching a movie on their own. The show will prompt the difficult conversation, one episode at a time. “Life is not always what it seems, but you are here, you have a great life, you are loved. Not everyone knows enough about Down syndrome and what they know about it is usually pretty negative, and not everyone is capable of raising and loving a child with Down syndrome the way they need and deserve to (that goes for the same folks who shouldn’t have a child at all if you look at the shocking statistics of child abuse and child cruelty). Mum and Dad are doing whatever we can to raise awareness of what it means to us to have a child like you in our life, but ultimately, we are not responsible for other people’s actions. It’s their right, it’s their choice and it doesn’t affect your self-worth. You are wonderful!” . For example. Chances are they’ve already heard about it all through Heidi Crowter’s groundbreaking and brilliant campaign, herself an advocate with Down syndrome and seeking to change the law so that terminations on the ground of a positive diagnosis of Down syndrome is legal only up to 24 weeks and not up to birth as it currently stands. https://www.crowdjustice.com/case/downrightdiscrimination/

6/ Incidentally, we don’t know at what stage of her pregnancy Laurel will have her termination, I predict within the 24-week legal limit, and I almost wish the storyline would show how she first decided to keep her baby and how her decision was questioned at each medical appointment as it often happens, and how she then changes her mind well into her 3rd trimester. There are indeed many recorded cases of women being pressured into termination. Here are a few of them, if you are interested https://fb.watch/2d_8WjpeJe/

But what if Emmerdale’s storyline plays all the right cards, the cards that we wish all women in Laurel’s position were given, that the couple have had all the balanced information and more, that they’ve done their own research, that they are friends with Leo’s family , and in the end, they do decide to terminate? Why can’t we accept that? I don’t think it perpetuates prejudice, I think it shows one of the directions people can take when at a T junction. Are we really saying that the decision of a character in a soap opera could be accountable for a further jump in termination rates?

I mean, let’s be conservative and look at that termination rate and say it’s currently at 86%, let’s say for argument’s sake that from now on, all expectant parents are given balanced information with the right wording etc… How low do we want that termination rate to go down to until we’re happy with it and stop bringing up the word DISCRIMINATION?

60%? 40%? If your answer is 0% then you’re not anti-discrimination, you are definitely anti-choice. And that, I can’t get on board with. 

I don’t believe in forcing a woman to carry a child she doesn’t want. All that would engender is women either travelling to a place where terminations are legal (meaning the financially more privileged women), or resorting to illegal and dubious underground practices and thus risking their own life. There are countries that are a pretty awful example of what this mind set can lead to.

And you know what else? I do feel compassion for all the women who chose, choose and will choose to terminate. Not anger, not disgust, not hate. Compassion if they made their decision based on fear and outdated perceptions. Compassion even if they made their decision based on lived experiences . Compassion because they will never know the love we feel for and from our child. It is indeed a sad loss. I might have been one of the 90%, I will never know for sure.

Of course, I also know that not all those women are given balanced information. But what does that even mean? Who decides what balanced information is, what the content of that information is, from which organisation, at which point of diagnosis, in which format or formats which could be leaflets, websites, meetings with people who have lived experiences. But then again, who decides which family can be a representative of what it’s like to live with someone who has Down syndrome? If you’ve met one person with Down syndrome, you’ve met one person with Down syndrome. The spectrum is as wide as it is for the mainstream population in terms of personalities, abilities, likes, dislikes, talents, etc… I would absolutely not volunteer to be one of those representative families. Too much pressure, too much responsibility. What if my child plays up during the meeting? What if she is not acting mainstream enough and that couple thinks “Oh my goodness, no thank you, couldn’t deal with that!” How many families should the expectant parents meet before they are allowed to make an informed decision and we are happy with whatever outcome? Should balanced information also mention the possibilities of dual diagnosis and additional health conditions? Keeping them in the shadow sure hasn’t helped curb those termination rates, has it? https://troynize.com/2020/10/19/downism-time-to-change-the-framing/

For the record, I have 2 vivid memories that come to mind, one when I was still at the hospital (we were living in Saudi Arabia at the time) and my husband told me that a colleague at work told him not to worry and that Down syndrome wasn’t a bad diagnosis these days (21 years ago). I was outraged! How dare he say that everything was going to be ok for my child! One of my older sisters has a learning disability and she’s had a miserable life and I expected the same for my darling daughter, I felt helpless and beyond sad for her.

And then, a few days later when we were all back home, a friend arranged for a family with a 4-year old daughter with Down syndrome to pay us a visit. Well, that didn’t help at all to assuage my fears and worries, on the contrary…

Let us not forget that there are roughly 40,000 individuals in the U.K. living with Down syndrome. Add to that, their family, relatives, friends, Down syndrome-related organisations, it’s safe to say that the whole Down syndrome community amounts to at least 1.5M. 

What I’m saying is, maybe we are not all hurt and damaged and offended by that storyline. If you go back to the petition launched by Diffability to ban amazon sellers inciting Down syndrome hate speech, that petition garnered over 40k signatures in the first 48hrs of launching, it’s now got nearly 80k.

And yet, only just over 30k people signed the petition to make Emmerdale bin their storyline in over a month. And yet only 265 Ofcom complaints about the show so far. But there’s been so much noise about it that the soap opera itself gained 500k new viewers, and rising. 

I believe in healthy debates. I believe we can use Emmerdale’s platform, not by shaming them but by using it to highlight everything that needs changing and missing (like an official pathway for women who do decide to carry on with their pregnancy) and addressing one by one all the concerns of expectant parents, and reassure them that those concerns although valid with their current understanding and knowledge of the condition will prove completely futile and unfounded, that in the end, it’s all about love and only love. I repeat what I said at the UN 4 years ago: “the real downfall of people with disabilities is that WE, parents, still haven’t found this unit of measurement which would enable us to quantify all they bring to society. But how on earth do you quantify something so strong, so beautiful, and yet so invisible, so intangible and therefore so worthless , so meaningless and so easily dismissible to most people who can’t experience it? And how can you blame them?”

And that, my friends, is my humble opinion. I respect yours, I hope you respect mine. No one should be silenced.

https://www.gov.uk/government/publications/ncardrs-congenital-anomaly-annual-data/ncardrs-statistics-2018-summary-report

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