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A blog that’s NOT about the “right to choose”

Jamie McCallum

That’s the clarification that many parents of a child with Down syndrome have had to start many conversations with over the last few weeks.

I’m tired of saying it. Tired of seeing other people having to say it. Most of all, I’m tired of it falling on deaf ears when it is said.

Why? Well, if you’re outside of the Down syndrome community, the furore about Emmerdale’s newest storyline may have passed you by. It begins on Monday and centres around a pre-natal diagnosis of Down syndrome, ultimately resulting in the characters opting for a termination.

The producers have faced an incredible backlash from a nation of parents of children who happen to have an extra chromosome.

They’ve batted back much of the criticism by referencing that they are telling a story that is true in around 90% of those scenarios. That it is a difficult and troubling time for people making that decision. That those people become victims of societal pressure and stigma resulting in them feeling like they cannot talk about what they’ve gone through. 

All of those things are true.

What comes next however, is an incredible and dangerous leap of logic.

They say that the backlash is an example of this societal pressure. That it reinforces their need to tell this story to advocate for those who are victims of it.

The leap of logic being that, apparently, virtually 100% of people who have a child with Down syndrome wake up the morning after the birth having had some kind of epiphany that turns them into a pro-life campaigner, intent on quashing a a parent’s right to choose and attacking those who make termination choices.

Obviously that is utter nonsense. Down syndrome arrives in people’s lives randomly and opinions on that subject are every bit as diverse as that of wider society.

So why then? Why are virtually 100% of Down syndrome parents’ voices so against this? What is it that they know, that others don’t, that would lead them to get so angry?

These are questions that no-one is asking.

The answer is complex and I can hardly blame most people for not comprehending those complexities. It’s taken me seven years of first hand experience to get it. Even then, I’ve had to listen to this open public debate to fully form my thoughts on this particular storyline.

The trouble is that there are really three issues rolled into one. I’ve said which one it isn’t in the title of this blog.

The second is about the negative misconceptions (i.e. wholly untrue) in society about the capabilities and lives of people with Down syndrome and their families. Something that people actually living those lives might know a thing or two about.

The astonishingly high termination rate simply happens to be the best evidence we have about how negatively society perceives this condition. You would expect it to be higher than average – of course you would – but to leap to over 90% tells a story. 

Especially when another huge number of people – also over 90% – who have a family member with Down syndrome are consistently proven in formal research to be happier and enriched by having Down syndrome in their lives.

It is not IN ANY WAY SHAPE OR FORM A JUDGEMENT ON THOSE INDIVIDUAL PEOPLE MAKING THOSE INDIVIDUAL CHOICES when we suggest that perhaps something is broadly wrong here when we see that 90% termination figure – given what we parents know to be true about our actual lives.

Put simply, Down syndrome has an image problem rooted in very outdated misconceptions. Or put differently – ignorance – of the truth in 2020. These misconceptions cause people with Down syndrome considerable problems well into their adult lives, long after anything relating to their time in the womb.

I must confess, as regards to the Emmerdale storyline, I did consider that it might actually shine a light on this perception issue and, if told well enough, would serve up an opportunity to address it.

When the producers say that they have done their research and will tell the story sensitively – I suspect (hope) that perhaps this is what they mean.

However, there is a third and very serious issue that they clearly do not understand. It is this issue that is the root of the anger from parents. On this issue, by definition, no amount of research enables the story to be sensitive enough.

When soaps attempt to address a contentious or taboo subject they admirably aim to help vulnerable people who are currently, or have previously been, involved in such a situation to feel supported. To show them that they are not alone. This story is no different and the vulnerable people in question are the potential parents facing that difficult decision.

However, unlike any other story I can think of – the act of publishing this story actually creates a victim. That’s the difference here.

Up and down the country right now, people with Down syndrome who are viewers of Emmerdale, and all of the other television shows debating the storyline, are having to be subjected to an open debate about the validity of their existence. 

They are having to listen to dialogue discussing the merits – or otherwise – of what makes them who they are. They are a vulnerable group, and this is highly confusing and distressing for them and their families. As the weeks continue, they and their siblings and parents will be faced with discussions in playgrounds, colleges, workplaces and social groups. Younger children whose school friends are blissfully yet to notice that they even have Down syndrome, might find attention is drawn to it for the first time.

Moreover no-one’s asked them! Imagine a particular ethnic group, or gender, or sexuality, in this day-and-age similarly listening to an open debate on national TV about the validity of THEIR existence? Not only that – imagine no-one invited them to the debate?? I think they’d have something to say about it, and rightly so.

This is not a trivial issue.

The producers may well successfully badge an entire country of additional needs parents as an “angry mob” but when the Chief Executive of a National Disability Charity accuses you of contravening “both the UN Convention on the Rights of the Child (UNCRC) and the UN Convention on the Rights of Persons with Disabilities (UNCRPD)”, as Eddie McConnell of Down’s Syndrome Scotland did last week, then you should really sit up and begin to wonder if the angry mob might just have a point. 

Instead the producers are leveraging an easy way out. They know that when most viewers hear certain trigger words like “debate”, “screening”, “termination” their mind leaps to an assumption that they’re watching a discussion about the well trodden debate around choice. In doing so, they win over most viewers before the dialogue even begins as most people have already formed their position on this. 

In being positioned as a “pro-life campaigner” (as I was wrongly introduced on ITV News last week) you are immediately given a minority position on a debate that most people don’t yet understand before you even open your mouth.

Indeed, yesterday I watched a gratuitously visual representation of this on national TV when a lone parent, Claire Farrington, appeared on-screen alongside the boss of ARC – a charity that supports women going through terminations. Not only does this visually imply that if one side supports women going through terminations then the other must be against, but lone parent Claire had to make her points up against an organisation who does this full time all day every day. According to her Facebook post, Claire was not informed of this in advance and, as if that wasn’t bad enough, she had to make her point while grappling to keep her young son in check to keep him in-shot – a visual that the producers no-doubt insisted on. (It’s worth noting that no such typically unruly child was provided to the other lady to grapple with while forming her points.)

Nevertheless, if it were possible to “win” a debate when both people are talking about entirely different issues then I’d say that Claire definitely did. However, I did find myself getting very annoyed that she was put in such a position in the first place.

I mean no disrespect to the lady from ARC or her organisation, I know nothing of them, but her presence was a complete irrelevance. A sideshow. Literally no-one is making this a contentious debate because of her specialist subject. I honestly don’t know why she was there. If I were a cynic then I’d wonder if it were an attempt to visually pre-frame the discussion before it began. To subtly pull the strings just enough in the favour of the TV network who happens to be airing the storyline, whilst maintaining the illusion of balance.

On a kinder day, I may just assume that they know not what they do. That, in a well intended attempt to address a real issue, they have unwittingly created another, potentially bigger issue, for a more vulnerable group that they don’t fully understand.

One criticism either way, is that they have missed some relatively obvious opportunities to tell the story without these issues arising. The most obvious being to simply be non-specific about what condition the character’s screening results have shown.

Whatever the motivation, the result is the same and no change in direction appears to be on the horizon. Parents up and down the country are bracing themselves for several weeks of difficult conversations with their children and their siblings as the story no-doubt follows them around everywhere they go. 

In light of that, Wouldn’t Change a Thing, the parent-led organisation that I’m a part of (which is largely focused on the second of the 3 issues mentioned – addressing negative misconceptions) has decided to run a positive awareness campaign to coincide with the first episode of the Emmerdale storyline.

It is our hope that this will give any victims of the storyline something positive to get behind and, perhaps, encourage others out there to look at real people with Down syndrome, their real lives and their real families and ask of themselves #WhatDoYouSee and maybe even…. #PassMeTheRemote.