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.”

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

Doyle family posing in front of a Christmas tree

Alzheimer's Disease, the Silent Threat to My Son's Future With Down Syndrome

Indulging in pizza with our family on a Friday night was pretty ordinary. Sharing with our then 20, 18, 15 and 10 year-olds that in six months they would have a new baby to welcome home — not so ordinary. That very special night was full of excitement, disbelief, and joy for the gift of new life. [...]

My Advice About Milestones as a Mother of a Child With Down Syndrome

Is he smiling yet? Is he sleeping through the night yet? Is he crawling yet? Is he walking yet? Is he talking yet? Is he writing, counting to 100, reciting the alphabet, reading, standing on his head while riding a bike yet? Parenting, to me, seems to have turned into one big competition over whose child is [...]
Knitting needles and wool.

Finding 'Love in Every Stitch' Parenting My Child With Down Syndrome

I am knitting. There. I’ve admitted it. After all these years, I am learning to knit. And I am loving it. I’ve never been a fan, it’s fair to say. There were better things to do with my time; not that I had the time to do better things. I felt superior. That knitting was [...]
daughter with Down syndrome wearing white dress hugging dad'sface

I Missed World Down Syndrome Day Thanks to Parenting

I am a father to a beautiful little girl with Down syndrome. Perhaps I should have taken time on World Down Syndrome Day to get out there and advocate for my child, raise awareness and make my voice heard. Except I’m writing this after World Down Syndrome Day — which was on March 21st — because much like many other [...]