World Down's Syndrome Day - highlighting a year of contradictions
Posted by Alithea Williams on 21 March 2017
Lily Beddall in front of her Matalan advert.
On World Down's Syndrome Day, Alithea Williams reflects on a year that has seen great strides in recognising people with Down's syndrome as full and valued members of society - but has also seen the rise of lethal discrimination against their community.
Happy World Down Syndrome Day! Fun fact: the date 21st March was chosen because Down Syndrome is the result of having three copies of chromosome 21. To begin on a celebratory note, it was wonderful to see the news that Lily Beddall, an absolutely gorgeous little girl with Down's Syndrome, has become the face of her age group in every Matalan in the UK.
There have been a number of stories like this over the past year - wonderful examples of inclusion and the great achievements of people with Down Syndrome being celebrated. However, it's also a year in which the NHS has approved screening which could lead to even more babies with Down's being aborted; indeed, screening for Down's has already led to an 100% abortion rate in some countries where it was been introduced. This last year has definitely been one of contradictions.
I don't know jack
That's why the celebration of World Down Syndrome Day seems so significant this year. I can't say that it's something that has impacted on me much before. Growing up with a cousin with Down Syndrome, I thought I was pretty clued up on it. Of course, just because I know Jack, doesn't mean I know jack about Down's syndrome - as should be obvious, people with it are very different - just like everyone else! However, one of results of being involved in the pro-life movement is that I've learnt so much more about the condition, and what great strides have been made in integrating people with Down's into the community in recent years. And I've also learnt the horrifying fact that over 90% of babies with Down's syndrome in the UK are aborted, and that having a baby with Down's is seen as so undesirable that governments around the world are bringing in new screening programmes to make that number higher still.
Alithea with cousin Jack.
The new screening technique Non Invasive Prenatal Testing (NIPT) encapsulates the contradictions surrounding Down Syndrome. The Don't Screen Us Out Campaign to stop NIPT being introduced without proper consultation has gathered unprecedented coverage of the issue, including a ground-breaking documentary by actress Sally Phillips. It has also made media stars of people like Heidi Crowter, a young woman who works in a hair salon, lives independently - and happens to have Down Syndrome. The video of her speaking outside of Parliament went viral.
However, despite all the positive coverage, the Department of Health has approved the roll out of NIPT. The introduction of the genetic test in other countries appears to have contributed to devastating implications for the Down Syndrome community - the introduction of the test has seen 100% of babies diagnosed with Down Syndrome being aborted in Iceland. In Denmark, the number is 98%. And this is seen as acceptable - Edith Schippers, the Dutch Health Minister, said "If freedom of choice results in a situation that nearly no children with Down Syndrome are being born, society should accept that."
Screening for what?
One of the speakers at our recent youth conference, Alexandra Tompson, spoke in depth about the problems involved in screening for Down Syndrome. One that struck home for me was the fact that there is no therapeutic intent: a prenatal diagnosis of Down Syndrome is not made to treat the baby in any way but is made only so the mother can decide whether to abort - or at most, so she can prepare herself to have a child with the condition. It's hard to escape the conclusions Alexandra makes that there are cost considerations at play, as well as other eugenic considerations.
Human achievements are special because humans are special
What can we do to combat a culture which celebrates the achievements of people with Down Syndrome, while saying it's perfectly ok to abort children with Down's up to birth? We need to continue to share the stories of our friends and family members who are living full and meaningful lives. Perhaps we also need to remember that human achievements are special because human beings are special in themselves, regardless of their age or abilities or 'wantedness'.