Down syndrome, screening & stereotypes

Heidi is a vivacious and out-spoken advocator for people with Down syndrome. You may have seen her in the media recently.

Don’t screen us out

A new test that allows more families to detect babies with Down syndrome in utero is due to be introduced on the NHS.

In 90% of cases, they will be aborted because of fear and pressure from society and (sometimes) medical professionals.

For someone living with Down syndrome, it is difficult to imagine a more upsetting discussion. How do you find a place in society that is actively considering eradicating people like you?

For 23 year old Heidi Crowter, this has spurred a lifelong fight.

Heidi is fighting the stereotypes still held about people who “suffer” from Down syndrome.

My child is not a risk

When the government has been obliged to release new guidance for the language professionals use to describe Down syndrome, it’s clear that perceptions desperately need to change.

When you are pregnant, there is a chance your baby will have Down syndrome, not a “risk.”

Advocacy LDA Leaders' List 2018

She is challenging the ‘professionals’ who peddle the view that people with Down syndrome have miserable lives.

“Professionals shouldn’t make judgements about whole groups of people before getting to know them.

“We are all unique individuals just like anyone else. IF you had met me you would know that my life is full of non-stop fun!”

Demonstrating the value of life

Heidi works tirelessly to broadcast the message that people with Down syndrome have happy lives. Her continued advocacy is admirable, considering that she has been repeatedly trolled online.

“Heidi’s photos were taken from her local support group website. They were used on disgusting pages on Google and Facebook, and when she was on national and local news to talk about the issue the trolls used the photos from those articles too.”

But she didn’t hide. Instead, she has…

  • Spoken at a demonstration outside the UK Parliament and was invited to address Parliament directly.
  • Spoken in a BBC interview and featured in their programme; ‘Things that people with Down syndrome are tired of hearing’.
  • Led discussions at Mencap, a bioethics conference and with the Church of England.
  • Spoken at the World Down Syndrome Congress and in supporting interviews on 5Live and BBC.

Heidi’s advocacy has been seen by hundreds of thousands of people. Not bad for someone who is considered by some, not worthy of life.

Yes, she’s making a difference

Heidi has helped affect policy, literally driving change among those who are in control.

The UK National Screening Committee have now established an ethics sub-group.

The Church of England will now push for better inclusion for people with Down syndrome.

The British Medical Association are lobbying government for a debate on Down syndrome screening.

Alongside this she is touching the hearts of people across the country. Her passionate words and expertise are changing public attitudes and challenging professionals to think again.

We are hugely inspired by Heidi’s drive, determination and compassion. Change doesn’t happen overnight, and it’s very clear that she’s in this for the long run.

Find out more about Don’t Screen Us Out on their website, Facebook and Twitter.

Stop press

Heidi is one of 2018’s Leaders to be featured in The Guardian – read her interview on their website.