Down syndrome: Britain calls for abortion law that equates affected and healthy fetuses
- Veronika Smink
In the United Kingdom, abortion is permitted up to the 24th week of pregnancy. But if the fetus has Down syndrome, the woman can choose to have an abortion at any time during the pregnancy until the moment of delivery.
But for Heidi Crotter, this law discriminates against people with the syndrome and represents a violation of their right to life.
“The law should be the same for everyone,” she told the BBC.
Heidi has launched a campaign to urge the country’s courts to change this provision of the abortion law, which dates back to 1967.
For the 27-year-old from Coventry, this is a very personal battle: she was born with the genetic disorder that causes Down syndrome.
He asks that fetuses diagnosed with Down syndrome have the same right to life as any other fetus: “I fight for the rights of those not born with Down syndrome, that they have the same rights as everyone else,” he says.
What differentiates us as human beings is our identity and who we are, not the problems we face, she added.
So far, both the Supreme Court and the Court of Appeal have rejected Crotter’s request, judging that the current law does not encroach on the rights of people with disabilities.
But Heidi Crotter has announced that she will take her case to the High Court, the highest court in the British judicial system.
Great love after fears and worries
The activist, who was chosen by the BBC’s 100 Women of Inspiring Women 2022 list, said she understands the concern many parents have when they find out their child has Down syndrome, a genetic disorder caused by abnormal cell division that results in an extra chromosome, causing the child to has Down syndrome. It causes changes in growth and physical features and is often associated with mental challenges.
“My parents only found out when I was born that I had Down’s disease and the first thing they felt was fear,” she says.
They didn’t know what to expect, she says. They thought that I would never be able to rely on myself and that I would never get married.”
Like many children with the condition, Heidi suffered from serious health problems.
She talks about it: “The first year of my life was very difficult because I was born with a hole in my heart and had to be operated on. I was constantly going to hospitals. I still have a scar on my chest.”
“It took my parents almost losing me for them to feel the love for me. They realized that I was just a child who needed love,” says Heidi.
In fact, the parents loved their little girl so much that they wrote a book about her childhood.
Heidi is the third of four children, she has two older brothers and a younger sister.
Four siblings attended the same local school, and when Heidi graduated from high school, she began working at a children’s hair salon as well as studying customer service at a local college.
When she turned 20, Heidi left the family home and moved into her own apartment.
During the spread of the Corona pandemic and the closures and restrictions that followed, the trade in the hair salon where you work collapsed and then closed, as happened with many other trades.
But Heidi was busy with other things during this period: she had a long-distance romance with James, a young man she met through a relative who lived about four hours from Coventry.
Heidi and James, who also has Down syndrome, married last year.
– My parents were worried that I would never get married, and in the end I did, and we had three ceremonies instead of one – laughs Heidi.
He explains that due to the Covid restrictions, they got married in a civil ceremony, followed by a small ceremony, before having a bigger celebration after the pandemic restrictions were lifted.
James moved into Heidi’s apartment, where the couple still lives today.
Heidi started her campaign in 2018, after the British government introduced voluntary testing of pregnant women in the health system.
The test, which is easy to perform and does not require any surgical intervention, allows us to determine whether the fetus has Down syndrome.
The goal was to reduce the number of pregnant women who resort to riskier diagnostic tests to make sure there is nothing wrong with their fetus.
But opponents of the move, such as Heidi, warn that it will lead to more women opting for abortions if they are found to be carrying fetuses with conditions such as Down syndrome.
According to anti-abortion groups, 90 percent of pregnant British women who receive this diagnosis choose to terminate the pregnancy.
In the United States, this percentage is 67 percent, according to a congressional report published in March of this year.
Heidi believes that the number of people born with Down syndrome will dramatically decrease and escalate if more tests like this are carried out.
“If there were more tests, fewer and fewer babies (with the syndrome) would be born,” she says.
Heidi joined the NGO Don’t Screen As Out, convinced that these abortions are happening “because people are not getting the right information”.
“A lot of parents, like my parents, are afraid of what they don’t know. The medical establishment only tells them negative things and that’s why many of them choose to have an abortion,” she says.
The activist understands that children with Down’s syndrome need more care and help, because they often have learning difficulties and may also have problems with the heart, vision, hearing, digestive system or glands.
But in her interview with the BBC, Heidi says that she believes that this is not a justification for allowing the abortion of fetuses affected by a genetic disorder, beyond the legal limit for the abortion of healthy fetuses.
“We don’t want them to see us as a problem… There is no such thing as a perfect child,” she says, adding that in Britain parents of children with Down syndrome can turn to many organizations for support.
Heidi says the impact of abortion laws is not limited to fetuses with Down syndrome.
“The law also allows abortion at any time during pregnancy for things that can be easily corrected. It’s shocking,” she says.
The legal text indicates that an abortion can be performed after 24 weeks of pregnancy when “there is a high risk that the child, if born, will suffer from physical or mental deformities that make it severely disabled.”
When the appeals court rejected Heidi’s request on Nov. 25, it acknowledged that many people with Down syndrome and other disabilities “would feel offended that the law recognizes a diagnosis during pregnancy as justification for an abortion, and might see it as a disrespect for their lives.”
However, the Court did not consider this sufficient to change the existing legislation.
But Claire Murphy, chief executive of Britain’s Pregnancy Advice, which provides support and care to women who have had a miscarriage, supports the court’s decision.
“There is no contradiction between a society that stands by people with disabilities and a society that allows women to make difficult decisions in difficult times,” she says.
Murphy believes that “the success of this case (amending abortion laws) will have huge repercussions, and to say that fetuses should have human rights flies in the face of years of legal precedent in the UK.”
And legal precedents mean previous court decisions in disputed matters that later became an example for deciding similar cases.
Murphy adds that “Heidi’s position is an attack on the rights of pregnant women, not only regarding abortion, but also to make their own decisions during childbirth.”
Lynne Murray of Don’t Screen Out tells the BBC that other countries, such as Iceland and Denmark, also have laws allowing abortions until the end of pregnancy if the fetus has Down syndrome or other defects, and as a result, abortions are “almost” countries. All fetuses affected by these conditions.
It’s a complex and controversial topic, but for Heidi, the law that was passed more than half a century ago is completely outdated.
“When the law was passed, people with Down syndrome could not go to school, they had to be in institutional care. There was no treatment or technology that exists today,” says Heidi.
Heidi points out that she respects a woman’s right to choose whether or not to continue the pregnancy, but she also believes that there should be no difference between children with disabilities and children without disabilities.
“The judges say the law does not infringe on the rights of people with Down syndrome, but I feel stigmatized.”
“When I see my little nephew, I wonder why my life is less valuable than his. Or my mother’s or my father’s,” she says.
“We need to look at Down syndrome in a new, more positive way,” adds Heidi.
“I don’t have Down syndrome, I’m human”
When asked why she thought a world without people with the condition would be a negative thing, Heidi said: “People need different people, we need diversity.”
“Yes, it is difficult to have a child with Down syndrome, but in the end (it will bring with it) huge rewards,” adds the activist.
In August, Heidi published her own book, the third part of the book dedicated to her by her parents in 2003.
In Just Me, Heidi describes her life as an adult, including her legal battles, married life, and her current job as a teaching assistant for children with Down syndrome.
The book’s title strongly alludes to an idea that Heidi reiterated during this interview, which is summed up in her line: “I’m not Down syndrome, I’m a human being. I’m Heidi,” and in her statement: “We’re all as wonderful as me.”