(Image source: Don’t Screen Us Out)
World Down Syndrome Day is a day to celebrate people with Down Syndrome. It’s also a day to think about how to make sure that they get the respect and support that they are owed as human beings, and about how to fight against the ableism that often means that they don’t. Today we want to talk about one way to do that (listening to people with DS and their families about what would make their lives better, even when they disagree with us about abortion), and one way not to (pretending Ireland is a wonderfully enlightened, non-ableist place in which people would never abort a baby because they had Down Syndrome).
In the lead up to the 2018 abortion referendum, pro-life advocates said that, given the high rates of abortion on the grounds of disability in countries like the UK, Denmark, or Iceland, legalising abortion here would be likely to lead to abortion on the grounds of disability.
Many pro-choice advocates and politicians strongly objected to this claim. It was offensive, and misleading, they claimed, to suggest that the parents of children with Down Syndrome might abort them because of their disability if presented with the option to do so. It’s easy to see why so many people found this idea deeply offensive, and did not want to believe it.
Nonetheless, as time passes, it seems increasingly likely that the pro-life movement’s prediction was correct. Towards the end of 2022, mainstream publications, including the Irish times shows how Irish parents react to being given the choice to continue with a pregnancy upon receiving a Down Syndrome diagnosis, or to end it.
The article in question was published towards the end of 2022.
About 95 per cent of parents whose babies are diagnosed with Down Syndrome at the Rotunda Hospital in Dublin choose to have an abortion, according to the master of the hospital.
Prof Fergal Malone says the Rotunda strives to be non-directive in its counselling to affected parents. “The 95 per cent who choose to travel do reach that decision themselves. We very much do not advocate for termination,” he said. “The reality is that the vast majority choose to terminate. I don’t have a view on whether that is the right thing. We don’t advocate for it, that is just the lived experience.”
Although the risk of Down Syndrome can be identified as early as nine weeks into pregnancy, confirmation of the diagnosis usually takes about 12 weeks, which is the cut-off for most terminations under Irish legislation introduced in 2019.
Down Syndrome, unless accompanied by another life-limiting condition, is not a fatal foetal anomaly under the legislation, so affected women seeking a termination after 12 weeks have to travel abroad for the procedure.
Presumably most of these parents have to travel to the UK if they want to abort the foetus with Down Syndrome. And, apparently, this is the option they choose.
And, so it turns out that, yes, we are an ableist society. Yes, when given the option to avoid giving birth to a child with Down Syndrome by ending that child’s life in utero, parents will take that option. Is this an ugly truth? Yes. Is it one that a parent might want to shield their disabled child from? Yes. Is it understandable that people worry about how people with Down Syndrome might feel about this and find the idea offensive? Yes. But it’s true. We have ugly prejudices. We don’t do enough for families caring for relatives with disabilities. And this results in what is essentially disability selective abortion.
If you do not think that a foetus is a human being or person, the 95% figure is evidence that bears witness to this prejudice and injustice. If you, like us, think that human foetuses are human beings, you also think that this figure bears witness to their deaths. One of the many ways in which ableism harms people with disabilities is by killing them in the womb.
But what should we do about it? One way is by trying to challenge ableism in our society more generally, not just when disability selective abortion is involved, but whenever people are discriminated against or looked down on because they are disabled.
Listening to people with disabilities and organisations that support them
And one way to do this is to listen to what people with disabilities or their families say they need and want; and regardless of whether they agree with us about abortion or other particular issues.
For example, it is worth paying attention to groups like Disabled Women Ireland, a group launched in 2018, who seem to have generally disliked the pro-life movement’s representation of them during the abortion referendum, while also disliking some of the pro-choice reactions. They were in favour of Repeal but we cannot only listen to the voices of people with disabilities who agree with us when it comes to making Ireland a less ableist place more generally. Disability Pride Ireland is another group, which is explicitly pro-choice but advocates for people with disabilities. Down Syndrome Ireland was also very critical of the way in which the pro-life movement talked about disabilities like Down Syndrome in order to argue against repeal during the referendum, though they did not officially have a stance either way, at least officially. But again, this is not a reason not to listen to them when it comes to questions about ableism in Irish society in general. They might not represent all disabled people – we know that when it comes to abortion at least, they do not. But they still represent people with disabilities and their families and so deserve our attention.
Other awareness raising Irish initiatives include the Purple Lights Campaign, an awareness raising campaign for people with disabilities, particularly invisible disabilities founded by Gary Kearney. The National Platform of Self-Advocates is an advocacy group run for and by people with intellectual disabilities. The Disability Federation advocates for, connects and supports people with disabilities in a variety of ways. And a multitude of other groups, like Enable Ireland, support, connect and attempts to represent the interests of people with disabilities.
If we want to help fight ableism in society, we can call it out when we see it – including when it takes the form of disability selective abortion, and try to be more inclusive and fair in our own lives and the institutions that we may be part of. But to do this well, it is well worth paying attention to groups like these – and to the opinions and experiences of people in our own lives and communities with disabilities.
There are, of course, also plenty of people with disabilities whose work intersects with that of the pro-life movement, or who are very much a part of that movement.
For example, in the UK, Heidi Crowter has done phenomenal work putting herself on the line to fight against abortion laws that blatantly allow disability selective abortions until birth, treating disability as a grounds for exemption to the normal twenty four week limit. Frank Stephens, a spokesperson for the Global Down Syndrome Foundation, has also eloquently spoken out about the issue to the US congress, memorably declaring that “I am a man with Down Syndrome and my life is worth living.” Not Dead Yet in the UK is a network of disabled individuals who oppose assisted suicide for people with disabilities.
In the US, Beth Fox is Board President of the pro-life group Rehumanize International, which advocates against a variety of practices that kill and dehumanise, including abortion, the death penalty, torture, assisted suicide, and nuclear weapons. She compellingly writes about the connections between her own experience of disability, and the broader mission of the group that she is part of:
The Consistent Life Ethic has tremendous personal importance to me as I was targeted for abortion due to a poor fetal prognosis that led doctors to conclude my quality of life would be so poor that having an abortion would be the “merciful” choice. I now live with chronic illness and multiple disabilities. As an adult, I’ve been denied adequate care because of this, and I have had doctors try to coerce me into signing a DNR because they were ready to give up on my life, again. I rely on medical devices to help me see, walk, and breathe, and because of this many think my life must be worthless or full of nothing but suffering, but this could not be farther from the truth. It is my great honor to serve alongside this organization which sees the value in my life and is willing to hand me the microphone and stand up when I can’t. As long as humans like me are being killed in the name of mercy, I will fight. As long as any human being is denied the human right to live free from state-sanctioned violence, Rehumanize will fight. Will you join us in this fight?
Given that Rehumanise’s mission is broader than that of many pro-life groups, they also draw attention to the intersection of ableism and violence in other contexts (like war zones) as well as working to fight against ableism more generally.
Supporting policies and initiatives that help families who care for children or relatives with disabilities
We can also do a lot more to support policies and initiatives that help families who care for children or other relatives with disabilities.
Again, we can turn to groups that represent and include the people involved. Family Carers Ireland and Care Alliance Ireland both write submissions that, for example, support policies that they want to see put in place, or that draw attention to needs for funding and financial support (one such suggestion is the provision of a pension for full-time carers).
Also worth keeping in mind are the steady trickle of news stories on Ireland’s ongoing inability to tackle extremely long waiting lists for access to medical care or assessments. This of course affects non-disabled children and adults, but it is easy to see how this would particularly affect people with disabilities.
And the usual: reducing the abortion rate
Finally, we can hope to reduce the number of disability-selective abortions that take place by continuing to do our best to reduce the abortion rate: by trying to have better and more productive conversations with people, providing individual women in crisis pregnancy situations with practical support, advocating for policies that help women, children and families – especially when any of those involve has disabilities that make them more vulnerable.