with input from Colette Lloyd
Why have we called this article, "it's complicated'? Because it is completely understandable that a great many women do not want any further restrictions on abortion, particularly in light of the appalling roll-back of women's rights that's happening in parts of the US. This article does not seek to take a view on the merits or otherwise of Heidi Crowter's particular legal case. Its sole intent is to highlight her achievement of a young disabled woman in following her desire to amend part of a law she feels is discriminatory.
Trigger warning: Abortion
Heidi Crowter, a pioneering young woman with Down’s syndrome, recently lost her High Court battle to change a law that allows termination of babies with the condition, ‘up to and including during birth’.
Heidi challenged the Department of Health and Social Care back in the summer, becoming the first woman with Down's syndrome to take the government to court. Along with Máire Lea-Wilson, whose son Aidan also has the condition, she aimed to update what she saw as a discriminatory law, which sets the limit for a medical termination up to 40 weeks.
To quote the 1967 Ground E Disability Abortion Act, a late-term termination is permitted if; ‘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.’
There is little guidance as to exactly what constitutes a ‘serious handicap’. That is left to the medical consultant’s discretion. And as such, Down’s syndrome, along with other genetic conditions such as cleft lip and palate and club foot, which in themselves are not life-limiting, are counted as sufficient reason for this category of abortions.
Downright Discrimination
Heidi was motivated to bring about change. To get this often controversial topic discussed in a high profile way is a massive achievement in itself. She feels that the current law is an example of ‘downright discrimination’, saying that knowing that babies with the same condition as hers can be terminated much later than those that do not, makes her feel that she doesn’t have the same value as everyone else.
She and Máire raised over £100,000 to make their legal challenge possible.
The proposed appeal
Heidi’s legal team were calling for the government to follow the recommendations of the United Nations Convention for the Rights of Persons with Disabilities. This states that ‘abortion law should be amended so that women’s rights to reproductive and sexual autonomy should be respected without legalising selective abortion on the ground of fetal deficiency.’
With ever increasingly sensitive early pre-natal screening tests available, this would not impinge on prospective parents’ choices, but bring babies with Trisomy 21 on a level playing field with typically developing babies. Those who felt their mental health would be at grave risk by continuing a pregnancy could still opt for a termination after 24 weeks, under clause 1(1)b.
Heidi, Máire and their supporters were disheartened to hear the court’s ruling not to change the law. It was an emotional time for the Down’s syndrome community, many of whom were left upset and angry at the decision, filling their timelines with positive images of their children living life to the full.
Quality of Life
Discrimination doesn’t end at birth of course and can be found in our classrooms, healthcare systems and social groups. But, like others before her who fought for rights to mainstream education, what Heidi wants to shout from the rooftops is that she and others with Down’s syndrome deserve to be treated equitably regardless of ability.
Part of the discrimination many with Down’s syndrome face stems from the bleak picture that is painted ante-natally, creating a culture of fear. “I want people to see the person behind the syndrome”, she says. “See the baby, not just a problem.”
Individual Differences
No child with Down’s syndrome is the same, each will have their own strengths and varying levels of need. One thing for sure, is that before making agonising decisions that will impact parents for the rest of their lives, up to date, unbiased information and support without pressure is needed.
There is no doubt that for that to happen, this law and the pathway of care parents receive when Down’s syndrome is identified needs to change. Best practice needs to be shared and copied across the nation.
Equal Healthcare in Pregnancy. Maire’s experiences…
When Maire’s son Aiden’s Down’s syndrome was identified, she felt very much in the dark. She knew little about the condition and was getting negative messages from the medical profession who equated his quality of life with the co-morbidities that may have been present.
One crucial difference between a pregnancy of a baby without a genetic condition versus one that does, is that parents are not routinely offered a termination.
More than 90% of babies who are identified as having Down’s syndrome antenatally are terminated, which Colette thinks is due, in part, to the pressure expectant parents are put under. “In a typical pregnancy, no one is ‘offered’ a termination, but when a baby has a disability, parents are repeatedly given that option, even after they have made the decision to continue a pregnancy. They are told that it might be best for them and their baby, a kind of early euthanasia.”
Positive Outcomes
Despite the appeal outcome, Heidi has achieved what might previously been unthinkable, speaking out publicly in the courts and across mainstream media on such a difficult, complex and divisive topic that many shy away from.
The campaigners have re-opened the conversation around adequate antenatal support for prospective parents and have brought attention to inequalities both pre and post birth. I think they have succeeded in focussing the spotlight on the solution to those inequalities too, for it is within the medical system that grass roots answers are to be found. When the medical profession understands Down’s syndrome better, and the fear of the condition is diminished, then these rare late term terminations will become few and far between.
Also read:
- #LetUsLearnToo: Don’t dilute disabled children’s rights!
- A World Without Down’s Syndrome? Where do we go from here?
- A genetic test for Down’s syndrome won’t guarantee a perfect human
- Revolutionary New Resource for Parents: Talking About Down’s Syndrome
- One mum’s tough decision – Mainstream or Special School for her daughter with Down’s
- Exposing quotes that reinforce Down’s syndrome myths: The Truth
- 21 Resources for Trisomy 21 on World Down Syndrome Day
- Hayley’s EHCP Save-Our-Sanity SOS plan
- How do Apprenticeships support young people with SEN?
- Ten Benefits of Pets for Children with SEND
- How to build self-esteem in your special needs child
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She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
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