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Heidi’s Story: Down Syndrome Goes to Court

Photo credit: Nathan Anderson, via Unsplash,

Tomorrow, Heidi Crowter is going to court. But not just any court. She will be speaking at the High Court of Justice in London. Her mission is simple: She wants to change the law. Specifically, the law that says people like her can be aborted up to birth. 

Unlike in the U.S., the U.K. has a 24-week gestation limit on abortion — at least, for healthy babies. But clause 1(1)(d) of the 1967 Abortion Act makes an exception in the case “that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” This has included babies with Down syndrome, as well as other disabilities like club foot and cleft palate.

As a woman with Down syndrome herself, Crowter is joining forces with young Down mother Máire Lea-Wilson, who was pressured to abort her child after a 34-week scan. Rather than return to her ordinary life as an accountant, Lea-Wilson decided she wanted to take action: “I have two sons, and I love and value them equally; however, the law does not value them equally. That feels so wrong to me, and so we want to try and change that.” 

Picking Up a Baton

Others have come close before. Conservative MP Lord Shinkwin, who suffers from osteogenesis imperfecta, introduced a repeal bill in the 2016-2017 session that won unanimous support but couldn’t be passed within the time limit. The UN’s Committee on the Rights of Persons with Disabilities also recommended the law be changed in October 2017. This was ignored. 

But according to a poll taken after Lord Shinkwin’s measure failed, two out of three people in England, Scotland, and Wales agreed that if sex- or race-selective abortion is banned, disability-selective abortion should be no different. As the law stands, it sends a clear message that disabled lives are not worth living, or saving. “What I don’t understand,” Shinkwin said from the floor, “is how after birth I can be good enough for the Prime Minister and the Queen to send me to the House of Lords but before birth I’m only good enough for the incinerator.”

Fast-forwarding two and a half years, in February 2020, Heidi Crowter penned a letter to Health Secretary Matt Hancock picking up where Lord Shinkwin left off, calling the law “deeply offensive.” She kept busy that year, turning her attention to Northern Ireland in June when it looked as if an amendment introducing disability protections might pass, but was ultimately defeated:

Heidi’s Story

Heidi was born in 1995, before the NHS offered the 20-week screening scans which are now the norm. Her parents were “devastated” when her disability was discovered after birth and have been open that they struggled to “come to terms” with it. After defying the odds to overcome leukemia, pneumonia, kidney failure, and open-heart surgery, Heidi went on to attend and thrive in mainstream primary and secondary schools. 

In adulthood, she was able to find employment at a salon and move into her own flat. Through a family connection, she met her now-husband James through Facebook, bonding over their Christian faith, their love of hymn-singing, and their shared fandom for the 70s sitcom Last of the Summer Wine. Though COVID interrupted their wedding plans, they were able to proceed with a more modest ceremony. The 4th of July marked their first anniversary.

Heidi knows it can be difficult for parents managing a diagnosis, as her own parents did. But she has a message for them: “Try not to be worried. There are a lot of Down’s syndrome groups that will support you and lots of groups on Facebook too. But also, go and meet someone who has Down’s syndrome. Look at the ability, not the disability.” Meanwhile, she’s proud of what she’s been able to do. “I just want people to see that we are the same as everyone else.”

A Limited Goal

Máire Lea-Wilson emphasizes in an interview that the campaign is solely focused on “removing a specific instance of inequality of the law.” It is not about “the rights or wrongs of abortion.” 

Isn’t it, though? Lea-Wilson’s outrage was first stirred when she, as a mother, was pressured to kill her son. Surely, in that moment, she sensed that what she was being asked to do was wrong. Not merely unequal, or imbalanced, but wrong in and of itself. And surely, Heidi Crowter senses this too.

This latest attempt to protect the most vulnerable British citizens in the womb may be destined for disappointment, like previous attempts before it. Still, that’s no reason not to try again. As Lea-Wilson says, it may be a limited goal, and in her case it may not spring from a fully worked-out pro-life ethic that recognizes all abortion as intrinsically evil. But if she and Crowter can move the needle enough to change a 54-year-old law, it will be a historic achievement. More power to them. For further updates on the case, follow it here.