Testing For Down Syndrome

Testing For Down Syndrome

Jan 19, 2024

Wordpress Bloganuary writing prompt:

If you could un-invent something, what would it be?

This is my first Bloganuary post using the prompt above. I have been following Andy Marshall's posts each day, but this one prompted me to take action! If you haven't met us before, Elijah and Crumpet (played by Dad, Rob) have made a load of YouTube videos and have a range of rhyming, illustrated kid's books on different topics (not about Down syndrome, but with Elijah as the main character). Signed copies are available on our website, www.elijahandcrumpet.com

Many families who have experienced Down syndrome say that they 'wouldn't change a thing'. It's a well-known phrase on social media. Why? Because their child has brought them so many positives that (if they ever thought otherwise) they no longer view Down syndrome with the negativity that they once had. Life as a family becomes a bit different, but it's still a good life which has meaning, achievements, love, happiness and much more.

So I would get rid of testing for Down syndrome. That does come with another societal change, though. A few in fact, since you can't just undo one thing that society has created and hope for the best. In a world that welcomed Down syndrome as a natural part of life and humankind, you would find a lot more support for people living with Down syndrome. It would be easier for them to receive an excellent education and they would be given equal opportunities in the workplace, with support and modified work if required, yet still with the same pay as regular workers.

Imagine a world which valued Down syndrome as a gift. A world in which you received only genuine congratulations from everyone when your child was born and not 'sorry to hear that your baby has Down syndrome'.

Now, many families with any kids do struggle. A regular kid can have many issues growing up and in life. So it's not everyone who finds parenting easy, just as bringing up a child with Down syndrome is not easy for everyone. But with more support, it would be made easier.

The test stands for choice. (Note that my view is not right to life as a choice - that is another debate which is certainly worthwhile but it's a different argument that I am presenting here.) That choice represents how society values the condition of Down syndrome. With most parents choosing to terminate on finding out that their unborn has an extra 21st chromosome, it shows that Down syndrome is not valued. In many countries we have come a long way from the past, when people with Down syndrome were institutionalised. We perhaps value the condition more now than in the past. But back then it was only discovered at birth, so it was at least more common in society.

Iceland declared a few years back their 'success' in being able to identify Down syndrome with a 100% success rate. Would this ability mean that Down syndrome would be wiped out? That the condition would no longer exist? That people with Down syndrome would not be allowed the chance to impact and change the world with their unique abilities and personalities? That's the risk we face.

When I look at Elijah and ask whether or not the world is better off with him being present, it's obviously a simple answer - 'yes, much better off'. The thought that testing might have reduced his chance of life is horrific. Yet testing has prevented many lives with Down syndrome from having been lived, prevented many families from experiencing the things that we say we appreciate dearly, and prevented society from sharing more of this experience.

(We didn't have an early test, by the way, for the sole reason that we were already of the opinion that we would be fine if we had a child with Down syndrome. That turned out to be a great opinion to hold.)

#downsyndrome #testingfordownsyndrome #downsyndrometest

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