Breda O’Brien: Ableist legislation shows lives of those with Down syndrome are less valuable

In run-up to Repeal referendum, some 56% of babies diagnosed in-utero with Down syndrome were aborted

Two weeks ago, the final part of Heidi Crowter’s challenge to the 1967 Abortion Act was thrown out by the UK Court of Appeal. Photograph: James Manning/PA

Last week, CBeebies presenter, George Webster, won a Bafta Children and Young People award. He is the first person with Down syndrome (DS) to be a presenter on British children’s television. He talked excitedly in interviews about how important representation in the media is for him and other people with DS. Earlier in the year, a new UK law was introduced to protect the rights of people with DS.

So things are looking up? Not exactly. Two weeks ago, the final part of Heidi Crowter’s challenge to the 1967 Abortion Act was thrown out by the UK Court of Appeal. Abortion is legal in the UK up to 24 weeks but abortion is permissible until birth 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”.

Women who did not want to abort their babies with DS were repeatedly told that they could change their minds right up to the moment the baby exited the birth canal.

Crowter, who lives with DS, and Máire Lea Wilson, on behalf of her son, Aidan, who also has DS, demanded a review of the disability clause on the grounds that it was discriminatory.

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Crowter and Lea Wilson contend that this clause is straightforward, ableist discrimination. It would seem that the United Nations agrees, or at least the Committee On the Rights of Persons with Disability. (CRPD). For example, in 2019, the Committee rapped Spain on the knuckles for “the lack of progress to implement the recommendation made by the Committee in its previous concluding observations to abolish legal provisions that reinforce a negative perception of disability by allowing the late termination of pregnancy based on foetal impairment”.

It has made similar comments to the UK and Austria.

The UK high court and court of appeal did not accept that any negative consequences for people with disabilities stem from the abortion legislation.

The high court had already rejected the question of the rights of people with Down syndrome before birth by pointing out that they do not have any.

So the court of appeal only looked at one aspect of Crowter and Lea Wilson’s challenge: that the UK’s law constituted an interference with the rights to private and family life of born people with Down syndrome, on the grounds that it promoted negative stereotypes about them.

The Judgement accepts that; “the Appellants, and no doubt many other seriously disabled people, genuinely perceive that Section 1 (1) (d) sends such a message’ and finds that understandable from their perspective. The Court rejects that interpretation, saying that ‘others draw a clear line at the moment of birth and deny that permitting the abortion of a foetus with a serious disability implies anything about the value of the lives of the living disabled.”

One of the judges states: “no doubt it might be said that Section 1 (1) d reflects long-established prejudices but that is a very different matter from it causing them or contributing substantially to them.”

Apparently, legislation which reflects long-established prejudices is fine and could not possibly serve to reinforce or strengthen such prejudices.

The judgment uses the appalling term, “living disabled”, not people with disabilities. It is meant to distinguish people after birth from those in the womb but not even the most ardent pro-choice advocates would suggest that humans in the womb are not alive. They just do not consider their rights and interests worth protecting.

Crowter said after the judgment that “the law was made in 1967 when we were not even allowed to go to school because of our extra chromosome. So, I think it’s time that the judges move with the times and actually meet with people with Down syndrome.”

Crowter is married, has been educated to NVQ level, and before the pandemic worked in a hair salon.

We pride ourselves on our inclusivity in Ireland and our positive attitudes towards people with DS.

When the 8th Amendment was repealed, it was hailed as a great, progressive moment. In the run-up to the referendum, Prof Fergal Malone said that about 56 per cent of babies diagnosed in-utero with DS were aborted.

Today, he says 95 per cent of babies with prenatal diagnoses of DS are aborted. (Most travel to the UK because Britain’s laws are so lax.) Is this something we should be proud of?

We should not romanticise living with a disability, including its impact on families. DS is a spectrum and the level of disability can be severe. Nonetheless, research shows nearly 99 per cent of people with Down syndrome indicated that they were happy with their lives; 97 per cent liked who they are; and 96 per cent liked how they look. One wonders whether the same figures would apply to those without DS.

Real progress would consist of wraparound services for those who live with DS and other disabilities so that they can achieve their potential.

Crowter is right and the court of appeal is wrong. Ableist and discriminatory legislation sends a clear message that their lives are less valuable.