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Disability & the Right to Choose

Disability & the Right to Choose

written by Goretti Horgan June 19, 2020

As Westminster ratifies abortion regulations for the North of Ireland, Goretti Horgan takes on the arguments made in Stormont which sought to restrict the regulations for reasons relating to disability and severe foetal impairments.

The regulations governing when abortion is legal in the North of Ireland have now passed all stages in Westminster, being voted through 355-17 in the House of Lords on 15 June  and 253-136 in the House of Commons on 17 June. This was despite a campaign of misinformation by anti-abortion groups and activists, suggesting that disabled people’s lives are somehow threatened by the new law.

A debate in the Stormont Assembly preceding the Westminster vote was triggered by a DUP motion which was purported to be about disability, and Downs Syndrome in particular. Most of the ensuing discussion on social media was about Sinn Féin’s declaration that it does not support “CEDAWs recommendation to provide abortion in the case of severe fetal impairment”, as both the DUPs motion and a Sinn Féin amendment sought to reject elements of the incoming abortion regulation.

It was hard for disability rights activists to listen to the only debate about disability that the Assembly has had recently and realise it wasn’t about disability rights at all, but about abortion, and using disability in an attempt to limit a woman’s right to choose. Many were angry that the debate was about abstract lives and not about the crisis so many actual people with disabilities and their families are in as a result of the COVID-19 crisis.

Disabled people and their families were abandoned by the state during the public health crisis. People whose Personal Assistant needed to shield themselves or a family member were left without an alternative; families caring for disabled children or adult children were abandoned as schools, day centres and respite provision closed. Those who had a Personal Assistant who could continue to support them had to find their own PPE.

And, of course, disabled people living in care homes, many of whom are much younger than the average resident, had to take their chances with the virus.  People understood why this was happening, but many families have been pushed to breaking point by 24/7 caring without a break for almost three months now.

It is eight weeks now since People Before Profit MLA Gerry Carroll asked the Health Minister “when people who have had to suspend contact with care workers because of COVID-19 will be able to regain access to support and respite services?” The Minister’s written answer asked for understanding that he was not in a position to answer the question at that time. Eight weeks on, disabled people and their families are left without an answer and even more desperate to know what plans are being made to reintroduce services that will meet their needs.

Choice

Abortion at any stage does not threaten people with Downs Syndrome, like Heidi Crowter who was mentioned in the DUP’s motion, because embryos or foetuses are not people. Of course, embryos and foetuses are human life, and if the pregnant woman is willing and able to give over her body to do the work of growing them into a baby, they will become people.  But they are not persons in the eyes of the law or in the provisions of international human rights treaties like the UN Convention on the Rights of People with Disabilities or the UN Convention on the Elimination of Discrimination Against Women.

Indeed, the Committees overseeing the implementation of those conventions issued a joint statement in September 2018 pointing out that restrictions to abortion access often hit disabled women harder than others.

Again, let us be clear: this argument is not about disability rights. The same people who campaign for abortion rights are often those who campaign for disability rights; disabled women (including those with Down Syndrome) have crisis pregnancies and need access to abortion. It is unsurprising to see that the MLAs on the Health Committee who regularly champion disabled people’s rights are also champions of abortion rights.

Time and again since the new law was proposed, we are told the pro-choice movement “wants to wipe out people with Down Syndrome”. Yet no-one suggests those advocating Rubella vaccinations are “wanting to wipe out people with congenital rubella syndrome” – although the vaccination has pretty much wiped out the syndrome. Nor does anyone suggest that encouraging people who might become pregnant to take folic acid is an attempt to “wipe out people with spina bifida”.

No one has a problem with limiting (or eliminating) births of people with some kinds of disability, as long as this happens before there is a pregnancy. There is no outcry about the embryos with chromosomal disorders that are not implanted during IVF. The outcry is from opponents of abortion rights and we need to focus on that.

Being pro-choice means accepting that you can’t walk in someone else’s shoes, that only the pregnant person and their family can know what is happening in their life, only they can know the circumstances their family faces – only the person who is being asked to give over their body to grow an embryo or foetus into a baby can know what is right for them and for their family. And it’s important to recognise that receiving a diagnosis of a serious foetal impairment is a tragedy for the people involved, whether they decide to continue the pregnancy or not.

The reality

The DUP motion and the Sinn Féin amendment sought to ensure that abortion will be available after 24 weeks only if there is a fatal foetal abnormality. We know from the South of Ireland that if the proposal became law, it would mean putting the very hardest of hard cases back on the boat to England. This is because, while doctors can diagnose particular conditions as fatal, they cannot say that the baby will die at birth, at three days or in three months. They can say only that most babies born with Trisomy conditions like Patau or Edwards syndrome will die before they reach their first birthday and they will probably spend all their short life in hospital.

It’s worth pointing out that there is no screening programme for Trisomy conditions in the North. As with most things, this means there is one law for the rich, another for the poor. Those who can afford to go private are much less likely to need an abortion after 24 weeks. For the rest of us, it means the conditions are only discovered at the 20 week scan. By the time additional tests are carried out to confirm the suspected diagnosis, women end up having abortions at later gestations than necessary which causes huge distress to them and their families.

It is worth noting, too, that in Canada, where abortion is treated like any other healthcare procedure and there are no restrictions, no time limits, the proportion of abortions carried out after 20 weeks is considerably less than in Britain. While in Britain, 1.9% of abortions are after 20 weeks, in Canada, it is just 0.6%. Why such a difference? Mainly because there is no red tape, and doctors and patients can make decisions based only on clinical need.

Because of the nature of genetic conditions (and NI has a higher rate of genetic conditions than other regions of the UK so this holds particular relevance), for some families, it may not be the first time that they are faced with this news. They may have already watched a child die. Are those in the DUP or Sinn Féin who oppose abortion for reasons of foetal impairment content to force parents to bring another child into the world knowing they will watch it die?

Finally, let us return to the earlier point about looking after actual people with disabilities before worrying about abstract life. As we start to ease the lockdown, the lives of many people living with Down Syndrome will be put at risk. Many people with Down Syndrome have heart and respiratory conditions that put them at greater risk of dying from COVID-19.

If we want to show our support for people with Down Syndrome, let’s make sure none of their parents or carers are forced to work in conditions that might mean they bring the virus home to them.  If we want to show our support for children with Down Syndrome, let’s make sure that our speech and language services get the huge improvement they desperately need and our schools provide the support that the NI Commissioner for Children and Young People says is sadly lacking.

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