‘Prenatal Testing, Disability and the Ethical Society: Reflections following Crowter’ conference was hosted by Oxford university last week. If you are not familiar with the Crowter case, it was a case brought to the high court by Heidi Crowter, Máire Lea-Wilson and her son Aiden Lea-Wilson in July 2021 to change the law that currently allows for abortion up until birth in the case of disability. Heidi, who has Down Syndrome, said about the current law: ‘What it says to me is that my life isn’t as valuable as others, and I don’t think that’s right. I think it’s downright discrimination!’. Find out more about the case with an easy-read version here.ER DD
During the two-day conference, we heard from several people with different backgrounds – some legal, some ethical, some medical and some with personal experience of the way that the current law has affected them. There were opportunities to ask questions of Heidi Crowter and the other claimants in the case. A panel discussion explored the patient-clinician dynamic, a relationship that is key to women’s experience in pregnancy. Some of the themes discussed were upsetting and a couple are described in brief below.
Dr Marie Tidball, Founding director and coordinator of the Oxford University Disability Law and Policy Project
Many brilliant points were made but several moments stood out to me. The first was hearing from Heidi Crowter about the moment she first learned of the law she is now fighting to change. She poignantly said, ‘I do like doing the court case, but I find it upsetting that I have to’ and later described how it affects many of her peers in the same way. Further to this, Dr Marie Tidball described the obstacles in the system that she had to overcome during pregnancy due to the lack of a ‘Disability Inclusive Maternity Care Pathway’(1).
James and Heidi Carter (nee Crowter), campaigners
A similar theme was continued by Dr Sarah Conrad Sours who described how poor heart surgery outcomes were seen in children with Down Syndrome in the US in the 1970’s due to delayed referral for surgery. These poor outcomes were attributed to the children having Down Syndrome, rather than the delay. As a result of this misconception, surgery was delayed even further, resulting in even poorer outcomes. Nowadays, this delay has been rectified and outcomes have significantly improved(2). As a doctor, I wonder whether there are similar modern-day examples that would explain the poorer health outcomes seen in people with disabilities today.
As the sister of two siblings with Down Syndrome who were adopted, I resonate completely with what Heidi’s husband, James, said during the conference about his (adoptive) family: ‘they absolutely love me and adore me.’ And so do more than 96% of families that have a family member with Down Syndrome(3). And that counts for everything! Just as Professor Johnathan Herring’s young daughter said, on advising a priest about what to say in his sermon during a bus journey: ‘just tell people to love each other, that’s all you need to say’. We could learn much from her as a society!
Lots of food for thought for the courts during the appeal of the case that has just been approved! Congratulations to Heidi and all the team involved.
- Dr Marie Tidball outlines her experience and recommendations here: https://ohrh.law.ox.ac.uk/time-for-action-to-accelerate-equal-access-to-maternity-care-for-mothers-with-disabilities/
- ‘Should We Mend Their Broken Hearts? The History of Cardiac Repairs in Children With Down Syndrome.’ https://publications.aap.org/pediatrics/article-abstract/134/6/1048/33061/Should-We-Mend-Their-Broken-Hearts-The-History-of?redirectedFrom=PDF
- Having a Brother or Sister with Down Syndrome: Perspective from Siblings https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348944/