Speaking Up About Prenatal Testing as Someone With Down Syndrome


Hiya, I am Heidi Crowter. I am 21 years old and I was born with an extra chromosome!

In England, we’ve had a good stable government over the years, but now something seems terribly wrong to me. Our government has decided to roll out non-invasive prenatal testing (NIPT) on the National Health Service beginning in 2018. So as someone with Down syndrome, I didn’t want to sit at home and think about it on my own. No, I decided to go public and speak out.

In April of 2016 I did my first speech outside parliament which went viral. Then in June, on Brexit day, I went to London to do a video for the BBC to talk about the stereotypes of people with Down syndrome — which again went viral. This got picked up by Vic Minett who talked to me on BBC Radio CWR about the testing. Then in October last year I went back to London to do more protesting.

Sally Phillips (2nd best actress ever in my opinion) did a very light-hearted, upsetting , heart-wrenching documentary called, “A World Without Down’s Syndrome?” It was very sad for me. But despite the sadness, I had the confidence to get back up again and I was once again invited to speak about it on Radio CWR with Vic Minett.

In February of this year I went to Oxford to speak more about my life with Down syndrome, which is when I starting mingling with the stars! One of them is Sally Phillips and she is one of the most amazing people I have ever met. In March of this year I went back to London to do more advocacy. It was challenging as I got to speak with the people who are doing the testing. I asked them a question, “What is so offensive about Down syndrome, and have you considered how this makes me feel?”

As I was asking this question, I felt I had no strength to carry on. I broke down in tears as the need to justify my existence got to me. Tears were trickling down my face until I read these words in the Bible, “I praise you because I am fearfully and wonderfully made.”

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