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Wouldn't Change A Thing : spread the word!

By Jess

There has been so much written, discussed and contemplated about the Emmerdale storyline where a couple decide to terminate their pregnancy following a prenatal diagnosis of Down Syndrome in the last few weeks. Discussions have been taking place on TV, radio and so many of the families I have 'met' in the short period of time I have been a more active member of the 'Down Syndrome Community' have had articles published in national and local press. A fantastic journalist I have come to admire greatly made reference to it in a recent piece in the Guardian.

I knew it before but I know even more now, the Down Syndrome community is tough, passionate, articulate, resilient and tenacious. It is also full of love and support. Using their platforms, many people have fought hard to encourage Emmerdale to change the storyline. Emmerdale has defended it's storyline, often citing the fact that there is already a character with Down Syndrome in the soap. This is not, in my view, good enough. Do you think it would be an acceptable argument against introducing another LGBTQ+ character into a show because 'there is already one'?

The first couple of episodes in the storyline have now been aired, with tonight's being where the couple find out that there is a high chance that their baby has Down Syndrome. I don't watch it (and won't start now), but it is my understanding that the first words that are spoken by the female character when receiving the news are 'Down Syndrome?' shortly followed by questions about termination.

I have already written about the high rate of pregnancies that are terminated when there is a diagnosis of Down Syndrome is given and that I was lucky enough to know people with Down Syndrome so as to never have felt anywhere close to wanting to consider that route.

But this is not about the right to choose whether to terminate or not. That, in itself, is an important issue to discuss. So many people face the heartbreak of deciding whether or not to keep a pregnancy for many reasons, mostly medical. To know that your child really would suffer if they were born and that their life would be nothing but pain - that really would be a devastating decision to have to face. More often than not, this is just not they case with Down Syndrome.

My first post reminds everyone that Down Syndrome is not, in itself, life limiting. Even if a baby is born with some medical conditions, many are easily treatable and most go on to live healthy, long and happy lives. I honestly don't think enough people know this. If they did, would the termination rate be so high?

So why chose Down Syndrome? Why now when so much is known about what a great life people can lead? The answer really does lie in the fact that so many people, including clinicians supporting women to make their decision, have such outdated views as to what living with Down Syndrome and with someone with Down Syndrome can be like. It also lies in the fact that no one in the community was consulted when the storyline was prepared.

It is therefore a huge issue that the storyline will proceed regardless, when it has the potential to perpetuate the fallacy of living with Down Syndrome as life limiting and something to be 'suffered' so it is kinder to terminate. I have seen comments which show that this is still very much a strongly held belief by many people.

That leads me on to the most devastating thing about this storyline - it's viewers. Some people with Down Syndrome love Emmerdale. How will they feel when they watch it and see very open discussions about the value some might place on their lives?

But don't let me tell you - a group of young people with Down Syndrome did just that.

I love Jessica Williams, a glorious self advocate. Amongst other things she tells us: 'Down Syndrome is the best and I love it. Don't be afraid, just go with the flow... Just enjoy it, it is a roller coaster.'

The brilliant Wouldn't Change A Thing Charity has tonight launched it's Christmas Campaign in the form of a beautiful song about just how glorious life is when you share it with someone who has Down Syndrome.

It makes me excited for our future with Frida. She is already smiling with her whole being, enough to change my mood in a second, and chatting happily away first thing in her cot (leaving Glenn now very sure he will continue to struggle to get a word in amongst the three of us) and charming anyone she meets, even at a COVID friendly distance.

Education not Discrimination is a message that has love at the heart of it. So, complain to Ofcom if you wish, but best of all, educate yourself and those around you as to how life really is by filling up on videos like those I have shared, and by following social media accounts of people with Down Syndrome and their families.

Only having Frida with us for four months in we really don't have much lived experience, but I knew from knowing people with Down Syndrome that there was nothing to fear and everything to be excited about and I am 100% sure that I will always say that I honestly, truly, madly, deeply, Wouldn't Change A Thing.