Talk Transcript | Brephos Conference 2019: For such a time as this
Rape, incest and backstreet abortion: Handling the hard questions | Nov 2019
Disability & Life-limiting Diagnoses
[Excerpt from 11.46]
Disability
So let's look at the cases first, in terms of disability. Abortion, as I said for disability, is legal up til birth, possibly even during birth. There was a bid to outlaw it, I think, back in the 90s in the UK and it didn't go through. And no one denied that it was legal. So as far as we understand this is legal, to abort for disability during birth. There are over 3000 in the UK and rapidly increasing each year. This ends up essentially having the consequence that 80 to 90% of children diagnosed with Downs Syndrome in the womb will be aborted, and that equates to about 700-800 in the UK every year. And actually many other conditions are grounds for abortion up to birth, including things which are surgically correctable, such as cleft palate, including twins. For example, you can choose one of the twins to have their life ended, and so on. And the disability doesn't actually need to be proven. So, there are probably also some children, with no disability or no condition at all, who are aborted under these grounds, up to birth as I said. This kind of discrimination in the law which allows abortion up to birth for children with disabilities but only up to 24 weeks for other children, has been condemned pretty widely by everyone, including some very pro-abortion authorities. So the Disability Rights Commission was set up in the Blair government, and it’s talking about this section of the Abortion Act. This section is offensive to many people. It reinforces negative stereotypes of disability, and there is substantial support for the view that to permit terminations at any point during the pregnancy, on the grounds of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally. Likewise, the UN, which is an extremely pro-abortion organisation that tries to push it on the rest of the world which doesn't want abortion, says that at least in one of their communities, one of their subgroups, on the rights of people with disabilities, they say the committee is concerned about perceptions in society that stigmatise persons with disabilities as living a life of less value, and about the termination of pregnancy at any stage on the basis of fetal impairment. The Committee recommends that the state party amends its abortion law accordingly. It says that this law is ultimately discriminatory. And this helps to bear in mind when we're talking about and thinking about abortion in that hard case of disability, or particularly life-limiting disability, that actually it is pretty widely agreed even by various pro-choice authorities, that this sort of distinction in the law is actually very clearly discriminatory and is incompatible with human inequality. So I've just included some statistics here about the numbers of children who are aborted for different reasons, different medical conditions found. Some of these are very severe complex conditions, anencephaly, where the child is born without most of their brain or with their brain extraordinarily changed in a way that usually doesn't allow them to live for a very long time, is an extremely difficult condition to manage, and it does have a very bad prognosis. Most of these children do not live very long. On the other hand, there are many children aborted, as I say, for cleft lip and cleft palate. You can see in the government statistics, about nine children were aborted for those reasons in 2017. Other reasons: Down’s Syndrome, about 700. You can see multiple gestation at some point, which is essentially twinning, and other reasons. So there's a huge variety of reasons given for abortion for disability. And there are statistics which I could send round on the method of abortion for those abortions. Life-limiting Diagnoses Now of course there's a hard question about life-limiting diagnoses. So we could all agree that people who have a genetic condition, perhaps, but who have a reasonably ordinary lifespan to be expected, most of us would say actually we think those people are really valuable and they should be allowed to live. At least everyone in this room I imagine would say that. Many people find it much more difficult to explain and understand these ideas when we're talking about babies who really do not have a long time to live at all, who are either expected to pass away in the womb or shortly after exiting the womb. But one of the first things I think he should say here is that often suggestions that abortion should be allowed in these circumstances are based on profound prejudice about the value and the quality of life of disabled people. So, there have actually been studies on this, perhaps stating the obvious, but Scott Co and a number of his fellow researchers show that 99% of people with Down’s Syndrome are happy with their lives, and they’re glad that they were born. Now, as I say, probably to everyone here this is blindingly obvious. But actually, the way that abortion is talked about leads people to think that people with disabilities really do not enjoy their lives, and would rather not have been born at all. Perhaps more surprisingly there's a condition called ‘locked in syndrome’, with which some of you may be familiar, in which usually due to a stroke, there are people who are unable to move really at all, except their eyes and blink. This is a profoundly disabling condition, and is one when I have tried to imagine having it, I cannot even imagine tolerating a life like that. It’s extraordinarily difficult to understand living in that condition and actually being glad that you're alive. I certainly find it difficult to sympathise with that. And yet when we actually asked people with that condition, there was a study which showed that they rated their quality of life on average, as about a 7, which is the same as an average student. So really, we make deep and huge assumptions about the quality of life that people with disabilities have, and of course about the value of life that people with disabilities have, and the value of that life is obviously always infinite. What is also interesting is if we look at the mental health evidence of the mothers in these circumstances, so often these kinds of cases are framed in the media as extraordinarily distressing cases, and of course they are. Any women who has had a diagnosis of their child in this way where they're told that their child is unlikely to survive for very long at all is going to find it extraordinarily difficult, and rightly so. It's an extremely difficult situation to go through. But what we're usually told in the media is that the obvious thing to do in that case is essentially to cut things short, to not force her to go through extra torment, and simply to end the pregnancy in a way that doesn't prolong that suffering that she is experiencing. But again, if we look at the evidence on this which is never told to women in this harrowing situation, the evidence points to quite a different story. Yes, in all of these cases, it is tragic and it's extraordinarily difficult for the parents. But out of those two extraordinarily difficult alternatives of ending the pregnancy or continuing the pregnancy, it seems that women who continue the pregnancy seem to have much better psychological outcomes. So a study from last year by Wool et al. found that 97.5% of parents in this situation who continued the pregnancy, had no regrets whatsoever, and Wool describes those feelings that they described about the opportunity to love, hold and meet their child, even for a very short time. And there are other studies which show similar things. And this is true for parents, whether they're religious or not. Other studies have shown the importance in cases like this of parents spending time with their child, either alive for a short time, or even with their child who has passed away. They’ve shown the importance of parents spending time with that child for getting long-term psychological outcomes. In terms of other mental health considerations, these are typically wanted pregnancies in the first place, and it was a reluctant, painful decision to end them, which is a risk factor for having psychological poor outcomes after a termination. In 2017 a paper in a top midwifery journal described women's experiences of delivery after abortion in these cases, and described these experiences as overwhelmingly negative. And they also documented the importance of spending time with the baby afterwards. And they quote a number of women saying things like, “No one can understand the torture of having an abortion [in that case]. It was one of the worst things in my life. There was no hope. I thought I would die.” Likewise, NICE, just this year published an evidence review of abortion cases and the impact on the mother, and they said very similar things, that it's almost an entirely overwhelmingly negative response to abortion that women have. Most of the women were not able to work or do anything. “I had a hard time to focus the first three months after termination. Everything felt quite meaningless.” Most women find grief intensifying for the first 3 to 6 weeks and lasting until the due date and so on. And there’s lots of talk of torture, and it being the worst experience that anyone could possibly go through. Now if we look by contrast at women who have the baby in those conditions, yes, it’s obviously an immensely difficult thing to go through for the woman and for the man, and for anyone else in the family. But if we compare the two options, both of which are extremely bad options which no one would want to go through, it seems that the better psychological outcomes are there for people who continue the pregnancy, and have some time to spend with their child and who really cherish that time. And there's actually a direct study by Cope et al. showing a direct comparison between these two groups of people, showing that those who continue the pregnancy have better psychological outcomes.
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