Irish human rights groups should campaign for the rights of the disabled, not for their termination

Irish human rights groups should campaign for the rights of the disabled, not for their termination
The View

 

In a significant development, the United Nations Committee on the Rights of Persons with Disabilities (CRPD Committee) has challenged its sister body, the Committee on Human Rights.

Or perhaps the latter should instead be called the Committee on Human Rights for some, because it has been pushing a ‘right’ to abortion on the grounds of so-called fatal impairment of the foetus.

The Committee on Human Rights is tacitly saying that these babies with very severe and often terminal disabilities should be excluded from the community of humans entitled to the right to life.

The CRPD Committee disagrees strongly with this exclusion and states bluntly that “laws which explicitly allow for abortion on grounds of impairment violate the Convention on the Rights of Persons with Disabilities (Art,. 4,5,8).”

It goes on: “Even if the condition is considered fatal, there is still a decision made on the basis of impairment.”

This is exactly what people who oppose abortion on the grounds of alleged fatal impairment have been saying. Furthermore, canvassers seeking to protect the Eighth Amendment have met countless people on the doorsteps who tell them of diagnoses that turned out to be inaccurate.

Assessment

But even if it is an accurate prognosis, as the CRPD Committee states, “the assessment perpetuates notions of stereotyping disability as incompatible with a good life”.

It may seem bizarre to speak of a baby with a terminal condition who dies before birth or shortly after as having a ‘good life’. But adults with terminal illness often speak of how sweet life becomes, of cherishing every moment that previously would have been taken heedlessly taken for granted.

Parents who have continued with pregnancies also speak of cherishing every movement in the womb, of every kick being evidence that their baby is safe right now. They speak also of the kindness and goodness that their little babies evoke in others.

To be fair, it is important to distinguish between those who are actively campaigning for abortion on the grounds of fatal impairment as a wedge issue in order to secure greater and greater availability of abortion, and parents caught up in the nightmare of a poor prognosis.

Such parents have been subjected to a barrage of misinformation long before they ever became pregnant. For example, the media chooses to continue to use the term ‘fatal foetal abnormality’ even though hospices use the term life-limiting condition. The media also focus disproportionately on those who have found opt for abortion.

Just look at how often the media report that people are ‘forced’ to travel abroad, as though it were the only possible option. It is not surprising, then, that some parents, unaware of perinatal hospice care, feel that abortion is the only possible route.

I have no desire to stand in judgement on individuals or couples who made the decision to terminate their child’s life in situations where they were not even adequately presented with alternatives.

No-one presented with this prognosis has an easy route ahead. No-one presented with this prognosis will not be devastated. But allowing the child to live out his or her natural span allows parents to discover a different role as advocates for their child and therefore to draw some meaning from a time of seemingly pointless suffering.

Although we do not have enough research in this area, a small-scale pioneering study by Cork University Maternity Hospital with parents who opted to continue with pregnancies shows how even though devastated by grief, ultimately they were glad that they did so.

However, people who advocate for abortion on the grounds of life-limiting conditions while not personally affected by it need to face head on that the UN CRPD Committee states that it is an ‘ableist’ position. This term is used to describe discrimination on the grounds of disability.

The CRPD wants to preserve human rights for people with disabilities, while the Human Rights Committee wants to remove them. Which has the moral high ground?

Support service

While maternity hospitals tend to be very good when parents opt to continue with a pregnancy, if the baby survives long enough to come home, there is no wraparound support service, even though organisations like LauraLynn Hospice and Jack and Jill Foundation do their very best to fill this gap.

In an ideal world, we would see Irish human rights organisations begin to agree that abortion on the grounds of impairment, fatal or otherwise, is ableist.

They could then begin to advocate for support services from the moment of diagnosis to long beyond the baby’s death, that would give people real help and comfort.

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