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European University Institute - Academy of European Law

Heidi Crowter delivers AEL Distinguished Lecture

On 26 June 2023, the Academy of European Law (AEL) welcomed esteemed activist Heidi Crowter to the EUI's Villa Salviati to deliver a Distinguished Lecture at the AEL summer course on Human Rights Law.

29 June 2023 | Event

Heidi Crowter

Crowter, an author and public speaker, has campaigned for the rights of people with Down's Syndrome with the organisation 'Don’t Screen Us Out'. She has challenged legislation in the UK allowing foetuses with Down's Syndrome to be aborted up until birth. She is now taking the same case to the European Court of Human Rights.

"I happen to have Down's Syndrome, but that doesn't stop me from living a vibrant life," declared Crowter in the opening of her lecture. "People say that people with Down's Syndrome can’t learn. I am here to advocate that we can."

Crowter, who is 27 years old, attended mainstream schools, was a certified hairdresser before becoming a full-time activist, has lived on her own since age 20, and was married in 2020. She was on the BBC's 2022 list of 100 inspiring and influential women - alongside Ukraine's First Lady Olena Zelenska and Ursula von der Leyen, President of the European Commission. There is good reason, Crowter has a powerful message.

"I found out in February 2020 that the law states that a baby with Down's Syndrome can be aborted up to birth, but for a baby without Down's Syndrome it's 24 weeks - which is downright discrimination," Crowter said in her lecture. Providing statistics from the UK, she added that, while the number of babies aborted after 24 weeks is small, it increased from 14 babies with Down’s Syndrome in 2020 to 24 in 2021.

"I believe that everyone should be treated the same as any other human being," Crowter stated. "We all have value; we all have as much right to live as anyone else."

Crowter went to the high court in 2021. She was the first person with Down's Syndrome to take a government to court. However, in September, she lost. She was granted an appeal but lost a second time in March 2022. Crowter then went to the Supreme Court, which rejected the case. Now, she is taking it to the European Court of Human Rights.

"I think that all babies should be equal in the eyes of the law," Crowter said. "I wanted to do something about this. I didn't want to just sit down and take it; I wanted to fight this injustice."

The case captured the attention of EUI professors at the Academy of European Law. When organising the summer course of human rights, with a focus on disability, the AEL co-directors reached out to Crowter.

"One of the key points in human rights activism around disability is that people with so-called disabilities - because the entire notion of who is disabled, and who is not, is up for debate - want to be part of the discussion," explained Sarah Nouwen, Professor at the EUI Department of Law and Co-Director of the Academy of European Law. "So, we thought if we organised a summer course on human rights and disabilities, we should have people speaking who are said to have a disability."

Nouwen, together with Neha Jain, Professor at the EUI Department of Law and Co-Director of the Academy of European Law, interviewed Crowter extensively after the lecture. They touched on issues ranging from her private life, including that Crowter holds the Guinness World Record for remembering the most celebrities' birthdays, to the ins and outs of why she chose to channel her campaign into the court system. Jain pointed out the importance of the lecture in supporting a discussion that is not just about the law, but about its impact on specific people.

"If all we are doing is sitting in the classroom and listening to the logic of the law, but not seeing how it plays out in the lives of actual people, then we will never be good lawyers," Jain said.

In her lecture, Crowter also addressed the link between her court case and pregnancy screening. "I campaign for 'Don't screen us out', so professionals and the government include our views, opinions and thoughts into future plans of pregnancy testing and the new NIPT testing."

Crowter went on to explain that pregnancy screening first started in the 1970s, when, in her words "important people thought that stopping babies being born with Down's Syndrome was like a cure." To Crowter, this is outdated, and proper assessments of the impacts of pregnancy screening are needed. She wants to ensure that future parents make informed decisions, and she does so by using her own persona as a case in point - speaking on television and radio programmes and in other public campaigning activities. Crowter is also the author of the book 'I'm just Heidi', which gives insight into what life is like for a child with Down's Syndrome and aims to encourage and inform parents.

"We have our own disabilities, each and every one of us, and every one of us has their insecurities and their problems in the world and their doubts and their vulnerabilities, and the nice thing about Heidi is that she is very open about her vulnerabilities," said Nouwen. "But she has shown us in her lecture all her strengths, and she is in so many ways much stronger than many of us are. It is not a competition, but it shows us that it is not the case that one is more disabled than another, it is just a different emphasis."

According to Crowter, people have a different view of Down's Syndrome because of her campaigning, and she knows that some people have not had abortions because of her messages. Now, she awaits the European Court of Human Rights to hear her case on discrimination of unborn babies. "I am very excited and nervous as I don't know what their attitude will be like towards people with Down's Syndrome," Crowter said. "I will never give up. I am going to fight to change this law."

"And even if I am too early with my challenge to disability discrimination," Crowter continued, "I know that one day the law will change, just like, eventually, it did for slavery."

The Academy of European Law promotes teaching and scholarship in the fields of European Union Law and Human Rights Law. It offers advanced-level summer courses in Human Rights Law and The Law of the European Union, manages several important research projects, and runs a publications programme.

Last update: 30 June 2023

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