Friday, 7 October 2016

A World Without Downs

I will write more about 'A World Without Down's/NIPT soon - need some time to gather my thoughts first (and I've got a poorly Ella to look after at the moment!).  The following post is cobbled together from my Facebook posts over the last few days... Alternatively you could read 'Losing Down's Syndrome?' - a post I wrote earlier in the year.

Many of you may have noticed that Down’s Syndrome is big news at the moment. Something that I'm sure you know is important to me.

This is the week that Sally Philips’ important documentary is due to air. She will explore the ethical issues and questions arising from the proposed roll out of the new NIPT screening test for Down's syndrome. 

The biggest question being asked…

Can you imagine a world without people like Ella?

I am aware that I share a lot of articles, pictures, blog posts and other information relating to DS on my timeline. I am not apologising for this, Down’s Syndrome is a big part of our lives and I am very committed to educating others (maybe you) and busting some of those long standing, ingrained cultural myths about the condition. 

Mainly, I want to get across that having DS is not to suffer, is not debilitating and does not cause distress or trauma to those living with it, (unlike the media would have you believe).

I am not against testing or screening in pregnancy. Nor am I against the new NIPT screening that offers women the chance to find out earlier in their preganancy, with greater accuracy and in a safer, less invasive way whether her unborn child has a chance of having a chromosomal abnormality – such as Down’s Syndrome.

I do believe women should have choice – in this case, to terminate or not to terminate as difficult a concept as that may be to me. What I am striving for, along with many others is for parents to be given balanced, factual, unbiased information relating to a positive diagnosis of Down’s Syndrome along with unbiased language (no ‘I’m sorry' and using ‘chance’ instead of ‘risk’) and access to support following a diagnosis – whether that is given pre or post-natally. This is happening far too infrequently at the moment.

I’m encouraging everyone to try and watch the documentary and to think about the issues that Sally puts across.  For she speaks for the vast majority of us within the Down's Syndrome community.

You can watch on BBC iPlayer (UK only) here:

If you watched the documentary or not, please consider taking a few seconds to join our social media THUNDERCLAP for Down's syndrome.  Supporting the need for women to be given unbiased, factual and better information regarding Down's syndrome and the screening process itself. We'd also like to see better access to counselling and support groups at the point of diagnosis and that language used should be non-leading e.g. 'I'm sorry...'

Thank You

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