Down Syndrome Awareness Month had hardly concluded when the latest attack on those living with the chromosomal condition commenced. In a stunning lack of sensitivity, ITV's Emmerdale producers revealed their intention to introduce a new storyline covering the disability-selective abortion of a baby found to have Down's syndrome.
That decision has understandably sparked outrage from many parents of children with Down's syndrome, and flies in the face of repeated calls that society should promote the dignity of those with disabilities.
One of the central characters on the show decides, alongside her partner, to terminate her pregnancy following a prenatal diagnosis of Down's syndrome. Rather than challenging the prevailing stigma around conditions such as Down's syndrome and celebrating the riches and diversity of the Down's syndrome community across the United Kingdom, the long-running soap opera instead chose prejudice.
Producers of the long-running show defended their storyline by claiming close consultation with the charity Antenatal Results and Choices (ARC) on the subject. This admission only confirms the worst fears of their many critics, however, since the ARC boasts a history of advocacy for retaining the current law in England, Wales and Scotland that allows disability-selective abortion until birth and working closely with the lobbying arm of the UK's largest abortion provider, BPAS, to try and introduce a similarly discriminatory siuation to Northern Ireland.
Perhaps Emmerdale showrunners were confused by their ambivalent name, unaware that the ARC were founded as 'Support After Termination for Abnormality' (SAFTA) in 1988, before renaming themselves as 'Support Around Termination For Abnormality' in 1993, and finally re-branding as ARC in 1998.
Perhaps they were similarly ignorant that the ARC has received funding from no fewer than nine biotechnological companies invested in the spread of Non-Invasive Prenatal Testing (NIPT). NIPT has already been linked to a 30% reduction in the number of babies born with Down's syndrome in the NHS hospitals where it has been introduced. Indeed, the NHS has also already announced its intention to roll out NIPT free of charge across the entire country, despite no assessment having been made of the potential impact of NIPT on the lives of people with Down's syndrome.
Serious concern about the existential threat of such testing to the Down's syndrome community was voiced during a Commons debate commemorating Down Syndrome Awareness Month. Although Health Minister Helen Whately was keen to stress that "there should at no stage be any bias towards abortion" following a diagnosis of disability, the depiction of Down's syndrome as effectively a death sentence in a major television programme undermines any reassurance the Health Minister's words brought, and brings cold comfort to the Down's syndrome community.
The sad spectre of disability-selective abortion only seems to grow. In 2019, there were 3,183 disability-selective abortions across England and Wales, with 656 of those following the parents' discovery that their child had Down's syndrome. Already in the first six months of this year, there have been 339 mentions of Down's syndrome on the HSA4 Abortion Notification Forms received by the Chief Medical Officer.
Though disturbing in themselves, the figures for abortion on the grounds of Down's syndrome are likely to underestimate the scale of the practice. A 2013 review of disability-selective abortion in England and Wales found that just over half of the total number of babies aborted for Down's syndrome was recorded in the official departmental statistics, and a review the following year by the Department of Health and Social Care confirmed the problem of underreporting.
Pressure to abort on the grounds of Down's syndrome is grotesque, regardless of the source of such suggestion. A recent report from Positive About Down Syndrome (PADS) revealed that after initially rejecting the option to abort, 46% of mothers were asked again to consider abortion for their baby with Down's syndrome, including one woman, Nicola Sparrow, who was offered an abortion at 37 weeks of pregnancy, even after being told that she would be induced the following morning.
Accounts of added pressure from medical professionals on women to abort their babies with Down's syndrome are surely abhorrent, and underline the deep concerns surrounding the spread of NIPT testing in a context so intolerant towards babies with chromosomal conditions.
The concerned voices of those involved in the lives of people with Down's syndrome deserve to be heard. As Hannah Wellbourn, whose daughter has Down's syndrome, has emphasised, such a discriminatory plot undermines the positive work of Down Syndrome Awareness Month in showcasing the dignity, talents, and ambitions of those living and thriving with the condition.
Similarly, the words of Sharon Thomson, mother to a six-year-old boy with Down's syndrome, bear repeating: "There will be adults with Down's syndrome watching that show feeling very hurt and upset and perhaps wondering if they should have been terminated." Over twenty thousand people have now signed a petition urging ITV to cancel the forthcoming Emmerdale episode.
The High Court will provide the next platform for discussions around disability-selective abortion. Leading campaigner for the rights of people with Down's syndrome, Heidi Crowter, will soon have her case against the UK Government heard on whether the allowance of abortion on grounds of disability until birth, beyond the standard 24-week limit for most abortions, amounts to "downright discrimination".
The Emmerdale storyline has been denounced as "on the wrong side of history" by the leading actress Sally Philips. Indeed, such outdated attitudes towards a life with disability should be condemned by society, yet the Emmerdale storyline proves we have a long way to go. The scale of disability-selective abortion and the worrying indications of their increasing ease should cause us all present concern. Eugenics should never be a form of entertainment. Nor should it ever be facilitated by our laws and policies.
As I concluded in my recent dissertation for my MA in Contemporary Ethics from Heythrop College, sadly our laws discriminate against the disabled in allowing disability to be, uniquely, the only grounds (other than emergency to save the life of the mother etc) for permitting abortion up until full gestation and birth. Under a Conservative government committed to equality of rights, this should change. The only good that can come from the hurt caused by the Emmerdale storyline is a reopening and reinvigorating of debate about this stain on our collective conscience.
Chris Whitehouse leads the team at The Whitehouse Consultancy, is a trustee of The Right to Life Charity, and recently completed an MA in contemporary ethics at Heythrop College.
