More on abortion – what about disabilities?

Cross posted on The Hand Mirror

The third and final post in my series on objections to / issues with my original post on abortion – speaking up for abortion, in which I argued that abortion was morally permissible, and access to abortion is morally desirable. You will recall that three issues were raised and I have written about two of them – the infanticide objection, and the female foeticide issue.

This is the third, and I think most difficult issue.

What about babies with profound disabilities, who don’t fit your criteria of being fully human? Why is it generally held to be morally okay to abort a fetus with severe disabilities but not to allow a baby born with severe disabilities to die?

This was raised by Mikhela, in comments.

There’s one rather simple issue here, and one very difficult one, which Mikhela didn’t raise herself but which is part of the moral worries surrounding abortion and it would be intellectually dishonest of me to ignore. The simple one is the issue of moral parity between killing and letting die, and the difficult one, which she didn’t mention, is what does it say about our thinking about disabled persons if we think it’s okay to abort fetuses with severe disabilities. That’s a very tricky issue, so I’ll deal with it first. (There’s some interesting research that I stumbled across recently, that the people who are world beaters, top of their fields, particularly with respect to sport, don’t spend any more time practising than those who are nearly as good, but they do spend more time on the harder and more challenging things. I’ve taken it up as a heuristic for virtually anything. Bar bloody housework. Which is not difficult – just tedious.)

Generally, we think that there is good reason for abortion if a fetus is severely disabled, or even somewhat disabled. Older parents routinely use amniocentesis to test fetuses for Downs syndrome, and other genetic disorders, and terminate the pregnancy if they show that the fetus is disabled. And aside from the dyed-in-the-wool anti-abortion crowd, no one seems to think worse of them for doing so. Even late term abortions are accepted if the fetus is deformed.

There are some terrible cases where the fetus is so badly deformed that it is likely to die before term, or die during childbirth, or die shortly afterwards, or survive to endure only a short, pain filled life. I’m going to assume for the sake of getting to the real issue, that these are not the abortions we might worry about. It’s the abortions where the fetus would be disabled, but would nevertheless live, and have at least an okay chance of a good enough life, that can be worrying. Downs Syndrome people are a case in point. As children, they are generally very happy and loving little souls, and as adults, they can live enjoyable and purposeful and giving lives, by which I mean lives that add to the net sum of human happiness – very vague, I know, but what I am trying to capture here is that they contribute and give back to society. So why is it okay to abort a fetus that has the markers for Downs Syndrome?

Of course, the abortion is morally permissible in the terms that I set out in my initial post – the fetus is not a full human being, so it is not morally impermissible to end its life.

Here’s the thing. If disabled fetuses are aborted, because either we don’t think their lives are worth living, or because we don’t want to support them, then what does that say about our feelings towards the disabled people who are already part of our societies. Do we think that their lives should be terminated too?

Of course not. These are people, persons, full human beings, and their lives are their own to dispose of as they wish. More to the point, as full human beings, people with disabilities enjoy all the moral standing that any other full human being enjoys. And in any kind of Western liberal democracy, people with disabilities have the full rights and responsibilities of any citizen. (How that gets put into practice is something to talk about another day, but at this stage, FWIW, it seems abundantly clear to me that people with disabilities are routinely excluded from full citizenship in our societies. For just one example, take a look at Lauredhel’s post on the difficulties of accessing playgrounds.)

Even so, when it comes to some, if not all, disabilities, it seems that if we abort a fetus with those disabilities, then we are saying that their lives are not worth living, even though there are full human beings, human persons, with those very disabilities, living among in our societies, and they say that their lives are worth living.

I think we need to turn the question around. It’s not about whether the lives of people with disabilities are worth living; it’s about whether we are prepared to support people with disabilities and their families. Why is it that when parents find that the fetus they are carrying is disabled, they choose to end the pregnancy, and perhaps try again? I guess that sadly, many parents want a “perfect” baby and they won’t settle for anything else. Others might be happy enough to rear a child and support an adult with disabilities, but they know that they simply do not have the resources to do so, and that the societies in which we live will not help them.

The “perfection” idea is a dangerous one – after all, in some cultures, one gender is seen as less “perfect” than another, and people of that gender lead compromised lives. I think it’s an idea we need to fight against, but again, it’s a topic for another day. I think however, that in the same way that we can morally disapprove of someone who has repeated and repeated and repeated abortions, instead of having a vasectomy or just bloody well taking much greater care with contraception, that perhaps we can morally disapprove of someone who is hung up on the idea of perfection. It’s an impossible standard for any child to meet.

At the same time however, I think that it is quite reasonable for parents to decide that they simply don’t have the resources – emotional, physical, financial, social – to rear a child and support an adult with disabilities. When a fetus with disabilities is aborted because the parents feel they cannot rear it, then the failing is not in the fetus itself, but possibly in the parents (vide the perfection problem in the paragraph above) and probably in the society that leaves parents of disabled children to bear the load on their own.

You can see that I’m meandering through this topic a little – it’s something I struggle with, in part because I simply haven’t spent enough time thinking through some of the ethical issues surrounding people with disabilities, and the way that our societies do, or don’t, look after our members who have disabilities. Nevertheless, I think that the point is that the problem when we abort fetuses with disabilities is not that we think that the lives of people with disabilities are not worth living. The problem is that our societies simply don’t support people who have disabilities, nor their families. We close our eyes, cover our ears, clap our hands over our mouths, and try to wish our responsibilities away. I’m very happy to keep on talking this one over in comments.

As for the simple issue – why is it morally permissible to let a severely disabled infant die, but not to euthanase them?

I don’t think it is. I know that’s what we do, but that doesn’t make it morally permissible.

I think it is cruel to allow infants to die. I think that if the decision has been taken that the infant should not live, then we are required to make their deaths as painless as possible. Simply refusing treatment, or food, so that the infant will die, means that the infant may well suffer pain, and possibly terrible pain, all because we are too squeamish. We wouldn’t do that to a pet dog, so why would we do it to another animal, just because it is one of our our species.

And I’m happy to talk about that one in comments too.

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19 responses to “More on abortion – what about disabilities?

  1. I think it is cruel to allow infants to die. I think that if the decision has been taken that the infant should not live, then we are required to make their deaths as painless as possible. Simply refusing treatment, or food, so that the infant will die, means that the infant may well suffer pain, and possibly terrible pain, all because we are too squeamish.

    I think this may be a slightly simplistic take on a very complicated issue. (Please note that I’m not nitpicking at this because I disagree with your whole post – just that I think this is an interesting area that perhaps lots of people are unaware of, and it warrants further exploration. I’d also like to emphasise for those who don’t know me, that I am 100% pro-choice when it comes to pregnancy termination, no exceptions, no caveats, except that it should be a fully informed choice – something that parents of foetuses with disabilities are often denied.)

    Many parents who make the heartbreaking decision to let their dying newborn die without heroic treatment attempts aren’t doing it to cause pain – quite the reverse, they’re doing it because they don’t want unnecessary pain inflicted on the babe. We used to think that newborns, especially premature newborns, “didn’t feel pain” – now there is evidence that some routine intensive care procedures are probably excruciatingly painful for even some very young babies, if they are neurologically intact.

    Dying newborns aren’t necessarily going to be in a world of pain, however, and and neonatal pain can be managed in ways that don’t necessarily involve euthanasia. Neonatal palliative care (a very rapidly growing subspeciality), like adult palliative care, involves assessing on a case by case basis.

    I recently followed a detailed blog journey of a family who decided to let their son with extremely severe disabilities live his life, what little he had, at home with them, and being treated as normally as possible. He was expected to die almost immediately, but ended up living for a couple of months.

    While I disagreed wholeheartedly with the blogger’s politics (as expressed now and then in the course of things), the story itself was incredibly moving, and I didn’t see any evidence that the boy was in overwhelming pain – or, in fact, any pain. To have put him down at birth would have denied him the life he did get to lead, in the arms of his family and at his mother’s breast. He may have been a newborn with disabilities, but he was still a person (once born) with a life to live.

    I can offer you the link privately if you wish to read it.

  2. I think it is cruel to allow infants to die. I think that if the decision has been taken that the infant should not live, then we are required to make their deaths as painless as possible.

    I think in neonatal units the policy is that such deaths are managed so that they are pain-free. I spent a few weeks in the neonatal unit at National Womans (Greenlane) and luckily didn’t get to see that happen but I’d say it’s much the same as palliative care in other areas with children and adlults – increasing doses of morphine to gently slide people away.

    Another aspect is how we would enforce any restrictions on abortion according to the severity of disability and where the line would be drawn. That for me would open up enough of a can of worms to allow abortion in these sorts of circumstances even if there were other genuine moral concerns.

    There’s also the issue of social equity – parents with resources, access to specialist medical attention etc – as compared with those less well off. That’s most likely going to become an increasing problem with the development of (expensive) genetic technology to “improve” our quality of life.

  3. my attempt at blockquotes didn’t work – the first paragraph should be indented.

    [Fixed it.]

  4. I certainly don’t see a difference between “letting die” and “killing”, morally, but I’ve probably spent too much time arguing with facetious wankers who like to rely on the good old doctrine of double effect (aka “lalala, God won’t notice *this* abortion if we pretend we don’t know the invariable outcome of the procedure!”).

  5. I’ve just realised we may be taking about two different situations here – I’m talking about terminally ill babies, but I think maybe some people are talking about babies with disabilities who aren’t necessarily going to die in the near(ish) future. Am I off base?

  6. I’ve been thinking about your comment all day, Lauredhel, and something that occurred to me as I was drifting off to sleep last night. I’m sorry, I didn’t have time to reply earlier (school holidays, Mr Strange Land in absentia, and all that). I agree, I really don’t know a lot about neo-natal wards, at all. I have been into a neo-natal intensive care unit a few times, visiting my niece who was born at 30 weeks, and her parents. But that’s about it. And you’re right, I’m not really talking about babies who are going to die anyway; if no matter what is done, a wee one is going to die, then we give them as much comfort and ease and love as possible for the short time they are here.

    The thought that occurred to me as I drifted off to sleep was that when it comes to aborting fetuses with disabilities, the justification is often that it is for the sake of the baby, with the thought, “Who would want to live a life with this disability?’ And that’s why people with the self-same disability can rightly be, I think, very upset. It is as though we are telling them how they should think about their own lives, telling them that their lives are not worth living, instead of listening to their own testimony about their lives. So aborting fetuses with disabilities can be a very powerful statement about what we think about people with disabilities, if the reason we give ourselves is that the life that the fetus would have is not worth living.

    But I think that’s a crappy position to take, and it’s not a justification we try to use for other abortions. If you think about the reasons that people give for having abortions, they are all, quite reasonably, centred in the woman’s own life, and to do with things like the woman’s life plan, her finances, her relationships, her existing commitments, whether or not she is able to support another child, and so on. Those are exactly the sorts of reasons that we should deploy in justifying aborting a fetus with disabilities. We shouldn’t pretend it’s for the fetus’s sake – we should just openly admit that it is for the sake of the parents.

    Which circles back to the story you mentioned, of the couple who took their teminally disabled child home, and loved and cherished him for the short life he had. That’s doing something for the sake of the child, not the parents. (Tho I suppose that a very cynical person might try to argue that the parents did it because it made them feel better. That seems to me to be an utterly vicious way to characterise the parents’ actions, and it’s a species of reasoning that I reject, for all sorts of reasons – again, a topic for another day.)

    So…. yes, I am talking about disabled rather than terminally ill infants, and in any case, I have previously rejected infanticide. So I’m arguing a hypothetical case, not something I think actually is morally permissible.

    But, if the decision is to let the baby die, then that death should come in as painless a way as possible. So this sort of case would not be permissible.

    Consider the case of Baby Doe: he was born in Bloomington Indiana in 1982 with a malformed esophagus and Down’s Syndrome. Without surgery to open the esophagus he would not be able to eat. Though the surgery has more than a 90 percent success rate, the parents vetoed treatment. The family’s obstetrician, who advised the parents of this option, later testified that “These children [Down’s Syndrome] are quite incapable of telling us what they feel, and what they sense, and so on.” This is inaccurate: many of these children are only mildly retarded. They tend to be happy, alert, and articulate, and often are capable of employment, education, and literacy.

    There was no way of knowing, at the stage that he died, that Baby Doe would have been severely retarded. Baby Doe was denied food and intravenous feeding. Nurses at the Bloomington Hospital, a pediatrician, and others filed suit to save the child, but the judge ruled that “there was no probable cause to believe that the baby had been neglected by his parents.” People came forward wanting to adopt Baby Doe, but the parents refused to release him for adoption. After six days without food and water, Baby Doe starved to death.

    I found this description of the case here.

    I’m guessing, although I don’t know, that this sort of thing would be comparatively rare, more a hypothetical than a real life case. But evidently, it does happen. And it’s not the same as allowing a terminally ill (cancer?) or terminally disabled (severe spina bifida? hydrocephaly?) baby die through lack of care.

  7. Ah, I think I understand you better now – you weren’t advocating euthanasia for babies with disabilities, you were pointing out a hypocrisy in the thinking of the sorts of people who withheld nutrition from “Baby Doe”.

    Nod.

    It might also be worth mentioning that in adult palliative care research, death by dehydration, if managed properly by a PC team, isn’t necessarily a painful or agonising one. In the current legal climate it’s the only way in which people who truly have no sort of function at all can be allowed to die (I’m talking about people like Terri Schiavo here, not babies with Down syndrome or CP!) I think that often the people involved in such cases are acutely aware of the legal lines and the way in which their actions might appear hypocritical, but they’re doing the best they can under the circumstances.

    There really is a valid slippery slope argument when it comes to euthanasia of people who can’t consent, and I think you’ve hit the nail on the head with the Baby Doe case. Such ableist thinking hasn’t died out by any means.

  8. I had a comment, but I’vevlost it – staggered by the case of baby Doe.

  9. I woke up (with a baby kicking me in the belly) thinking more about Baby Doe and the construction of maternal instinct and how in some traditional African, and I presume other, cultures the aforementioned kicking baby would have been exposed at birth, being the girl twin, as a matter of course. My anthropological knowledge is scanty but I believe in some other Pacific Island? cultures the baby is not considered ‘human’ until three months old – just as arbitrary as our definition based on feotal viability.

    The search for perfection in offspring is not new, just more technologically sophisticated. Historically, most babies born with observable disabilities would have been – discarded (trying to find a less confronting word but that’s what it was). Robin Grille’s ‘Parenting for a Peaceful World’ has a horrifying account of the history of parenting – I’m not sure how accurate his research is, but there was no golden age for kids.

    Closer to home, babies were routinely farmed out to wet-nurses in the country for years; nannies looked after the stay at home ones from dawn to dusk (and overnight, I presume); even the English culture of sending kids off to boarding school for their childhood (do they still do that?) sounds inconceivable to me.

    I know I didn’t fall in love with my babies for a few weeks – planning to attachment parent, this was confronting as I was reading all this information that said ‘Mothers find the cries of their babies deeply disturbing and are drawn to comfort them’ and I just wasn’t! (This was not post-natal depression, just detachment).

    The genetic markers/search for perfection issue is very salient. I am constantly concrened by the search for a ‘gay gene’ for this reason – would my parents have chosen to abort me if this was available to them? I think it’s important to acknowledge that these issues are decided, as you say, for the parents.

    Sorry, this is getting very long, and I’m losing the common theme, which is – maybe this idea of how much we, as a culture, ‘naturally’ and ‘instinctively’ love our children is all a furphy fuelled by margarine ads?

  10. Deborah I’ve been meaning to blog on this topic for such a long time, but never gotten around to it!

    Just to follow up on a couple of your comments, for instance this para:

    The “perfection” idea is a dangerous one – after all, in some cultures, one gender is seen as less “perfect” than another, and people of that gender lead compromised lives. I think it’s an idea we need to fight against, but again, it’s a topic for another day. I think however, that in the same way that we can morally disapprove of someone who has repeated and repeated and repeated abortions, instead of having a vasectomy or just bloody well taking much greater care with contraception, that perhaps we can morally disapprove of someone who is hung up on the idea of perfection. It’s an impossible standard for any child to meet.

    At the same time however, I think that it is quite reasonable for parents to decide that they simply don’t have the resources – emotional, physical, financial, social – to rear a child and support an adult with disabilities. When a fetus with disabilities is aborted because the parents feel they cannot rear it, then the failing is not in the fetus itself, but possibly in the parents (vide the perfection problem in the paragraph above) and probably in the society that leaves parents of disabled children to bear the load on their own.

    It seems to me that you spend some time addressing strawmen. For instance, the person who just has abortion after abortion after abortion instead of using contraception. It doesn’t seem to belong in this topic, but really, unpleasant though such a person’s life would be (the impact on their body wouldn’t be the greatest), are there really people who are going to follow this course in sufficient numbers to make it a social problem? Since the only person harmed would be the woman herself, I can only think that it would contribute to the overloading of the medical system – if thousands of people did it. I don’t think they do. And if they did, you have a major birth control problem in your country which needs fixing.

    OK, now I’ve gone OT myself!:-)

    OK, then you address the “perfection” idea, whereas the quote at the beginning of the post specified foetuses with “profound disabilities”. Aborting a foetus because it’s not “perfect” versus aborting one with profound disabilities? Not. the same. thing.

    I’ve been avoiding this topic partly because I don’t want to hurt people’s feelings by writing stuff that seems ableist. But to put it relatively simply, having two children with profound disabilities in the (extended) family, I know that the birth of such a child means that the parents, or usually the mother, has to make the child their life forever after. It’s not like the disabled community who post on blogs; it’s someone who who will never lead a life that approaches independence in any meaningful way. That’s the meaning of profound disability, as opposed to CP or paraplegia or CFS or other disabilities. Therefore, although the child may be able to enjoy life in certain ways (although I think often it’s a hell of physical discomfort and, perhaps, I don’t know, boredom) the impact on the parents’ lives is huge, and the child or children effectively become their career. So, from where I sit, a woman must have the choice whether or not to bring a profoundly disabled child to term, because This is Going to Be Her Life from now on.

    Of course, this isn’t going to prevent profoundly disabled kids being born, because neither of the ones in my family had any sign of their various syndromes before the birth. Therefore, the argument for abortion versus better provision for disabled parents, children and adults isn’t an either/or equation.

  11. Oh, and I forgot another huge deal-breaker for me, which is that the parents need to get the person looked after after they die. Not only do they lose control over their kid’s life after they die, but they go practically demented with worry every day thinking about it.

  12. Random thought: women with disabilities also have abortions. Sometimes they abort pregnancies when they learn that the foetus has a medical problem.

    One risk I see in this kind of argument about the ‘ethics’ of aborting ‘imperfect’ foetuses is that it’s an argument about a future which doesn’t exist. In a sense, it’s no different from arguing about the future potential life of a ‘perfect’ foetus. If you accept (as I do) that abortion is a woman’s right to choose, then that choice applies to all women in all circumstances. How our society views and provides for (healthy) children is not directly causally linked to the availability of abortion (as the right-to-lifers assert). How our society views and provides for the disabled and their families is not directly causally linked to the availability of abortion either.

  13. It seems to me that you spend some time addressing strawmen. For instance, the person who just has abortion after abortion after abortion instead of using contraception.

    Well, yes. I thought this sort of person was completely unlikely too, and I made a comment to that effect in an Applied Ethics tutorial (that I was teaching) only to have a mature-age student there, who I knew was infertile, and had never been able to carry a pregnancy to term, say, “You’re wrong. My sister has had five abortions, and she just refuses to be careful.” I was gobsmacked.

    I’m happy to take on board that such cases are (or may be) very much exceptions, that the evidence is anecdotal at best, and that most people are careful about contraception, and wish to avoid having to make the abortion decision if at all possible. Nevertheless, I think we still want to be able to make a moral judgement about the attitudes of such people, even while saying that each abortion is morally permissible. It’s not the abortion that’s morally problematic; it’s the lack of care and forethought.

    And I agree that it’s an exceptional case. But we still want our ethics to deal with exceptional cases, neh?

  14. And yes, I agree that it is just fine for the abortion of a profoundly disabled fetus to go ahead because of the impact on the parents. I explained that point a little more fully, and more clearly, I think, in response to something that Lauredhel said. And I really don’t have a problem with that. If I did, I would have to have a problem with virtually all abortions, because as far as I can tell, virtually all abortions are carried out due to the impact on the parents, usually the mother.

  15. But we still want our ethics to deal with exceptional cases, neh?

    I’m a believer in “hard cases make bad laws”. We don’t prevent all women from having babies because some women commit infanticide. We don’t forbid driving because some people are dangerous and should never be behind a wheel. etc, etc.

    If we legislate on the basis of these outliers we’ll penalise the majority of the population and that is, really, how it is at the moment – the law is treating us all like unhinged unfortunate cases who will all be queuing up for abortions in our millions the minute it’s legalised, because, you know, we enjoy it. Or something.

  16. Butt that’s just it. I think abortion is morally permissible, and even more than that, is morally desirable, just because it enhances women’s autonomy. I just think that we can make moral judgements (i.e. of disapproval) of the way that some men and women use it. Damn straight I disapprove of dangerous drivers, and there should be appropriate penalties in place. And I also disapprove of people who have repeated abortions because they just refuse to take care. I happen to think that the appropriate “penalty” is disapproval – nothing more. As in, “You got it wrong there, my friend, and a responsible, grown up person would try to do better.”

    Of course, it’s a fine line to walk, and I can see the difficulties in trying to walk it. But I don’t think that that’s a reason for not trying at the one time think that abortion is morally permissible, and access to abortion morally desirable, without at the same time being unhappy about the way that some people use that particular freedom. In any case, it’s something we do all the time. For example, in general I disapprove of people yelling and shouting in public parks, because it’s upsetting for other people there, but I would never want to pass a nuisance act against it, because there is a far more fundamental freedom to protect, with respect to freedom of speech.

    I had a brief conversation about this over at the other place where I blog too.

  17. Not directly relevant, but a nibble of “food for thought”: there are a small number of disabled that want their children to be disabled. A number of the Deaf community have expressed desires that, given an opportunity, they would “prefer” to have their children also be deaf (more accurately Deaf, if you read their motivations).

    The capitalisation of ‘Deaf’ is intentional, and refers to the “culturally” deaf. These people are profoundly deaf, but not profoundly disabled in the sense of needing long term “life care”.

    Extreme cases include preferring to abort normal, hearing children. Again hypothetically as it assumes screening for “normal hearing” was possible/available/allowed.

    It is possible to screen some forms of genetic deafness. The reverse would be quite a bit harder, as there are many different genetic variations that can contribute to deafness, but in principle you could screen if unborn child carried, or didn’t carry, the particular genetic variant that made the parents deaf.

    You could argue its a selfish motivation, as the usual motivation presented that the parents not want be “cut off” from the their children (these parents use sign language and hearing children naturally enough prefer to speak and so eventually spend time outside the Deaf community).

    This “opposite” motivation might help illuminate your debate and might interest some of those presenting enthics courses—?

  18. I have a friend who had four abortions over the course of 15 years. She was just very unlucky. I really doubt there is anyone who ‘refuses’ to take care after multiple abortions and even if there is, i don’t see it as cause for disapproval, rather for concern that someone is being so self-destructive or acting out such negative ambivalence about fertility.

  19. Hmmm… yes, you’re right, suzeoz – ‘concern’ is a much better response. It still has, I think, an element of making a judgement about the behaviour being wrong in some sense, or why would you be concerned, but concern is a much better response than just disapproval.