Here’s a lovely op-ed that speaks clearly to my experience, and with whose basic premise I have some disagreement.
The writer, Patricia Bauer, is the mother of a daughter with special needs. She argues against abortion for reason of disability. (Reading this op-ed actually comes on the heels of hearing about someone who had an abortion because her unborn was diagnosed with my son’s syndrome. I found that pretty upsetting.) Much of Bauer’s description of life with her daughter relates to moments I’ve had with my son. There was the moment when my husband and I looked at him, looked at each other, and each said, “He’s a person!” There are the people who ask, in various tones of voice and for various reasons, “Did you get any prenatal testing?” And the people who have the temerity to suggest that an abortion of the unborn with a genetic disorder is better for that unborn.
I don’t come by it naturally, but I’ve developed a pretty thick skin. Part of being a philosopher is giving papers and having people tell you to your face that your ideas are entirely wrong-headed and unworkable. People have said some pretty unpleasant things about me in response to blog posts I’ve made. None of them bothered me a whit – except one. I wrote a post saying that even though I support the right for prenatal testing, I am so glad I didn’t have it and that I ended up having my disabled child. A pro-choice commenter on another site said I was obviously selfish because I never considered whether it was better for my child never to have been born (I had addressed it, but in another post). Seriously, I was so pissed off, I swore off blogging forever (which lasted 48 hours or so). The idea that I committed a wrong against my son by having him is infuriating beyond measure. Those of you with kids, try imagine someone saying this to you about one of your kids. There may be exceptions, but the only people I ever hear say that a person would be better off never living are people who no intimate experience with someone with disability. (That is, of course, except if they say it for a person who is 1) someone with a terminal condition or 2) someone who irreversibly lacks consciousness or 3) someone who has the autonomy to decide her own death.) Or maybe an angry teenager. I didn’t write about whether I had harmed my son by having him because it so completely obvious to me that my son’s life is worth living for him. He’s a happy, socially engaged, loving, playful little guy who has made me interrupt writing this post about 16 times so I could sing him “Twinkle, Twinkle.” He’s developing. His life will be undoubtedly harder, but not worth living?
But as I suggested in that post, I wish to keep the issue of disability separate from abortion. Because it’s actually not relevant. Unless you are one of the very few people who think it’s okay to euthanize a born child with a genetic disorder (and I imagine most people would not be okey-dokey with me exposing my child on a mountaintop), the issue of abortion and the issue of disability are separate. Let’s say the fetus is a person at the time of diagnosis. In that case, if you would not euthanize the born child, you should not abort the unborn. Or let’s say the fetus is not a person at the time of diagnosis. In that case, an abortion for any reason whatever is permissible. Let’s assume a parent gets a diagnosis like my kid’s – more severe than Down syndrome, but not terminal and without unremitting pain. If you think it’s okay to abort this disabled unborn after the point at which you think it’s okay to abort any fetus, you’re basically endorsing eugenic infanticide. Some ethicists do (see the section titled Justifying infanticide and non-voluntary euthanasia). But if you 1) don’t endorse euthanasia of disabled infants, but 2) do support later-term abortion than you otherwise would of disabled fetuses, you’ve got some re-jiggering of your views to do.
I’m not sure when personhood starts, and I have thought and read a lot about this. I’m pretty damn sure it’s after conception, and feel tentatively that it is significantly earlier than viability (which is a point that makes little sense to me as a personhood cut-off). The reason I support a right to prenatal testing is out of respect for the perfectly plausible view (even though I don’t share it) that personhood starts much later than I suspect. I agree with Bauer that the world is better with disabled people in it. But if abortion is morally okay at the point of diagnosis, then you are not aborting a disabled person at all – because the unborn is not yet a person. If abortion is not morally okay at the point of diagnosis, then disability — except in extreme circumstances — does not suddenly make it permissible.
Clearly you’re the trained philosopher and ethicist here, Rose, so I’ll ask you.
Is it ethical of me to want to take a whole salmon and repeatedly hit that other blogger over the head with it?
Well, it was commenter, not a blogger. And on my CV, ethics is an area of competence, not specialization.
But I think it is not merely permissible, it is obligatory.
Not if by doing so, you’re injuring the salmon’s unborn offspring. At least, according to Roe.
Oh that was horrible.
In any case, abortion strikes me as one of those things that has a certain moral weight to it. As such, I imagine that the decision is one that sticks with a person for years decades. Walking through a grocery store and seeing a mother talk to her baby about how carrots are orange. Friends talk about their kids learning to walk. That sort of thing provides a constant reminder of what happened and what might have been.
If someone made such a decision and is still haunted as they pass through trivial parts of their day (getting groceries, talking to friends), I can easily see how someone might try to reduce the weight of the decision they made by pointing out that it was not a choice at all but, perhaps, an obligation. People who fail to meet this obligation are walking reminders of the conversations not being held in the grocery store and the things that you can’t say when you talk to friends.
And what can you say about a child with a genetic anomaly? “I only wanted to give up my weekends until the kid was old enough for a sitter?” You can’t say that. It sounds monstrous when you say that.
Easier to think that you met your obligation… and the people out there still having babies anyway? They’ve failed to meet their obligation.
I suspect, to some degree, they hear whispers as they go through their day… otherwise, why would they say what they say so loudly?
Interesting. I’ve often wondered if that’s what parents who institutionalized their kids felt, but never thought about in terms of abortion.
I heard an interview with Ayelet Waldman where she was saying she had an abortion because the child had a genetic disorder. She was saying how difficult it was for her to have done so. I remember it rubbing me the wrong way at the time, but don’t remember why…maybe I was picking up a tinge of this?
Well done, Mike.
Was the salmon sustainably raised?
Trying to have a serious discussion with you guys is like swimming upstream. I feel like we’re always returning to the same place we started.
We thought about this a lot before we got pregnant, and decided to take it on a case-by-case basis … but that there were definitely diagnoses for which we were willing to say, “I am not competent to parent that child,” at which point — to us — the least-pain path seems to be to make sure there won’t be a child to be not-parented-well, at as early a stage in the process as can be managed.
To us, ethically, by producing a child for our family, we consent unconditionally to all future obligations involving that child that are unavoidable and inherent to the child (so, like, not protecting them from the police if they go into serial-killing as a serious hobby — but taking care of all helpful medical bills, education, housing, feeding, emotional nurturing in the best way for THAT child, etc). The point at which we personally feel we have the chance to choose not to consent is well before the child becomes air-breathing and self-motile, because once it’s a baby in your arms, you signed on for this, so man up, as it were.
Because of this, we did due diligence about the potential presence-in-the-fetus of the general range of “things we can’t handle as parents” that we decided ahead of time were ON that list. There was also a large range of things that some parents would consider terminatable (or adopt-if-found-able/have a crisis at the birth) offenses in a kid that don’t bother us personally.
We agree that each family has its own needs and standards, and wouldn’t necessarily attack or look down on any set of parents for choosing to place their “will not deal” lines differently than we have.
I wonder if that’s coherent at all; I’ve read it over several times and I think I’m saying what I meant to say, but it’s complicated. :->
I hear you, totally. And again, if abortion is permissible at that point (whatever it is) it isn’t the disabled person yet. It’s not like I didn’t want my third pregnancy to be a typical kid. And I am very pleased he is typical. I love my disabled kid to pieces, but I only want one of him.
Interestingly, more minor stuff than my kid actually had seemed not do-able. I remember hearing about a kid with fragile X and thinking that there was no way I could handle that. From my perspective now, the guy with fragile X is very high functioning. We turned out to be better at it than we would have thought. You probably would too.
We went through the same thing, except for us it was a “rush job” when we discovered to our chagrin that we were pregnant after having more or less decided not to have any more. Whoopsie! Our concerns mainly centered around the fact that we were both older than ideal — early and mid forties — and knowing that that raises the risk of certain genetic disorders.
So we had the testing, nothing heinous came up, and my wife gave birth to a perfectly healthy and normal little girl who just turned 8 a couple weeks ago. Can’t say we would have planned to do this — after all, I’ll be 62(!) when she graduates high school, but once the die is cast you take what you get.
I’ll never actually retire, of course, but there are worse fates in life I suppose.
Sorry if I misunderstand you, but you sound like a hypocrite. Abortion in general is great except if you decide to abort a fetus with genetic defects, then it is somehow bad/immoral/wrong, etc?
Not to put words in her mouth, but I think the distinction she’s trying to imply is this: If it wasn’t ok (FOR YOU by your personal standards) to abort a nondiagnosed child at X weeks gestation, it shouldn’t be ok to abort it just because you now know it has a diagnosis.
If I’m misconstruing her argument, I hope she’ll correct me.
Classy. Way to go out of your way to misread and dumb down something just enough to take cheap shots at the person posting about her relationship with her disabled child and her ethical struggles with complex issues.
Seriously, classy. No, no, I mean it. Really, really classy.
I’m sorry, did I sound sarcastic? No, that was top notch class.
Put Scott in the “bothers me not a whit” category :).
Of course you don’t misunderstand me! Of course I am saying that it is okay to abort any fetus at any time, unless it’s disabled! Because that is not completely insane.
(since we have trouble understanding each other, allow me to add that the above paragraph is ironic.)
Post boiled down:
If it is at point X in pregnancy when it is permissible to have an abortion, then it is permissible to abort a disabled child.
If it is at point Y in pregnancy when it is impermissible to have an abortion, then the kid having a disability does not suddenly make it permissible. It’s impermissible, with or without disability.
That seems to be supposing that personhood is an on/off switch, rather than a continuum, which would make any abortion a balancing of factors. I don’t think it would be controversial to say that, if an abortion is going to happen, earlier is better, even if later is permitted. With that in mind, might not the hardships (both for the child and for others) associated with a severe disability be a factor in the balance? That might make the cut-off from permissible to forbidden 10 weeks instead of 9 (to pick numbers out of a hat). That’s a long way from infanticide.
Totally agree that there isn’t an on off switch, and that there aren’t necessary and sufficient conditions of personhood. However, whatever conditions do count toward personhood, life being somewhat more difficult is not a relevant factor. The person is or is not a person, whether life is difficult or it isn’t. Life is more difficult for someone in gestation in poverty in a developing country, but they are no less a person that a fetus in a developed cpuntry at the same stage of pregnancy. In a case where the bads of life clearly outweigh the good, I think abortion is permissible not because that fetus is not a person, but because you are killing a person for her own sake.
And the difficulty for the parents can never be a relevant factor.
I didn’t mean that the prospect of a difficult life makes someone less of a person. Rather, that it may change the degree of personhood where abortion is still permissible.
The death of anything with any degree of personhood is, certeris paribus, a bad thing. But abortion is still permissible, even though it seems that fetuses have some degree of personhood. So clearly we feel that (at least in some cases) there’s sufficient reason for an abortion to justify the death of the fetus. Certainly, the prospect for increased hardship seems like an additional reason for abortion. It’s not even close to strong enough to justify infanticide (unless you include something like never attaining consciousness as a “hardship”), of course. But that doesn’t mean it has no effect.
There are half-weeks or so that I’m barely managing what we’ve got … but a lot of what she’s doing that burns my spoons is ‘normal’ toddler/preschooler behavior. She was much less exhausting to deal with, for me personally, when she could live in a carrier and just eat and sleep and be quietly amused, so maybe I would do pretty well with a less-mobile non-typical kid.
Generally, my internal ethical compass counts sins against Full People as greater than sins against Sorta People — our dogs are Sorta People, and so are some ages of not-born-yet babies to me. And I can see how exactly what buckets you put folks in could lead to some disabled folks being classified as Sorta People (but I don’t). But even Sorta People are entitled, IMHO, to more consideration and autonomy than Not People. Before a certain point, my internal ethical reflexes are certain that our gestatory product was definitely Not People, though I’m not entirely certain I could nail it down for you as hard rules and borderlines.
To me, with my particular upbringing and ethical beliefs, bringing a kid into the world and failing it (by giving it a horribly dysfunctional family situation, treating it like the kid you WANTED and not the kid you GOT, being so severely overwhelmed by life that you can’t be a workable parent for it, etc) is a far, far greater sin than opting out of a kid you haven’t yet, quite, got. I agree, the kid one chose not to have is a kid you’ll never again get in your family — you’ll miss out on their unique personhood, plus any other benefits they might have brought to you or mankind. I call this the Bedford Falls effect: you never know what that kid might have accomplished, if you’d had it. However, this sin (if I can describe it as that: removing potential good from the universe preemptively) is far lesser, in my mind and soul, than having the kid and failing at parenting it.
Some people are overwhelmed. We are not. From studies I’ve read, about 40% of parents with kids with severe disabilities have either anxiety or depression. That’s a lot, but it’s less than half. More likely not to occur if you have marriage stability, other children, and a few other factors that I’m forgetting right now. For milder stuff, like Down Syndrome, basically the rates of anxiety/depression are the same. We’re pretty much about as happy as we were before. There’s a lot of evidence that people drastically overestimate how happy or sad some longed-for or dreaded event will make them. Most people return to a set point.
I’m not at all trying to talk you into anything! Seriously. I’m just discussing what my exprience was. When we got the diagnosis, we thought our lives were over. That we were consigned to hell. I actually wrote an “It Gets Better” post for new parents in case they were googling. Most parents I know say the first six months to a year is worst, because you’re so scared about what life is like. But that’s actually the time when your kid is most similar to typical.
You’re actually right. Comparing my disabled kid and my typical kid right now, day to day management of my disabled kid is less exhausting. Therapies and doctor visits are time consuming. All the gear he needs is a pain to schlep. Being treated differently in public. But my disabled kid is much better able to entertain himself, and is far less interested in asserting his own authority. He’s always giggly and cuddly. Of course, that may well change when he gets older. He will get frustrated when he can’t communicate well. God knows when toilet training is going to happen. The heavier he gets, the more I’m praying he starts walking soon-ish. It also depends if behavior problems emerge. There are ways of dealing with them, but it can be rough. We lucked out in the temperament department, here’s hopinh it sticks! But I won’t have to deal with a surly teen!
Sorry -for Down syndrome, parent happiness is about the same as typical.
And for some reason my last post didn’t end up properly replied to Rose’s reply @4 to me … hope it’s clear anyway. :->
I concur almost entirely with this post. The only exception I would carve out is for debilitating and progressive diseases like Tay-Sachs, in which there is no reasonable hope for anything other than a short, painful life. I think it is reasonable to argue that it makes otherwise morally questionable abortions (if one has moral qualms with abortion at all) less ambiguous.
I would make an exception for those as well, but it is basically a form of euthanasia.
For some reason I recoil more from that word than I do from the notion of aborting under those circumstances, which is admittedly an emotional rather than a rational reaction.
Is pain a necessary component here? Suppose testing at, say, four months gestation determined that the pregnancy would produce a baby who would live, quite peacefully, for at most a few weeks and then die. Is it ethical to terminate the pregnancy rather than go through it knowing the result? (You might infer from the specifics that this isn’t entirely hypothetical. Fortunately, we didn’t have to make that choice.)
I think this one, and the Tay-Sachs one, is a toughie. I tend not to think pain is a necessary component (I mentioned terminal diseases, not necessarily painful ones, in the OP for that reason). Abortion is wrong, when it’s wrong, because of the deprivation of a future of experiences. If there is no future beyond a couple of weeks, and that is certain (within reason), then abortion doesn’t seem wrong. But I’m okay with euthanasia for people who will never regain consciousness, too, so that’s a related question. Although I could see an not-implausible argument for someone saying deprivation of any future is not warranted.
I’m sorry you had to go through something where that choice was a serious possibility.
Sorry, the previous is all assuming that you believe that abortion at 4 months is generally immoral.
“Suppose testing at, say, four months gestation determined that the pregnancy would produce a baby who would live, quite peacefully, for at most a few weeks and then die.”
Imagine how much money will be spent keeping that baby alive. Because there’s no “just let the baby die” in modern America, unless you steal it out of the hospital and go live in your car.
Which, in one of those gruesome ironies so common in medicine, is one of the big reasons our infant-mortality rate is so much higher than other countries. If every dead baby is a dead baby, then your infant mortality rate is going to be gauged that way. If, instead, you have “nonviable” live births that you conveniently don’t report as dead babies, then your infant mortality rate gets better just by definition.
I’d be curious to see the impact on overall healthcare spending of giving birth to children with terminal illnesses diagnosed in utero. Not including preemies nor disabled non-terminal illnesses nor undiagnosed terminal illnesses.
My guess would be: not huge. But perhaps I’m wrong.
Because there’s no “just let the baby die” in modern America.
Yeah, there is. You just have to be a bit firm.
Great post, Rose. Thanks!
I never thought of the prenatal testing question. I wonder how I would answer or if I would answer. I’m shocked at what private questions strangers ask sometimes. I’ve gotten a few super-personal questions about my divorce from people I would consider acquaintances. It feels like prenatal testing is pretty personal.
I’m very glad you didn’t swear off blogging, Rose.
I’m not sure when personhood starts, and I have thought and read a lot about this.
This is basically where I am.
My approach to abortion is pretty much oppositional–I tend to err on the side of not doing violence when faced with uncertainty–but, then, as we’re dealing with uncertainty, my approach is at best prudential. I don’t have moral certainty. And even if such certainty were attainable, there are also relevant ethical questions pertaining to what the law should and should not do. Establishing that abortion is immoral–if such can be established–does not give one an absolute basis for using the law to force a women to remain pregnant against her will.
While I appreciate the distinction you’re making by having the ambiguity of personhood justify the uncoupling of abortion and disability, I wondered what your thoughts were by the general consensus that regardless of your view on personhood, using prenatal testing for sex selective abortion is unethical. Mara Hvistendahl’s book “Unnatural Selection” is up for a Pulitizer and addresses “gendercide” as something upsetting the natural balance. If, regardless of personhood, sex selective abortion is wrong for the impact it has on the natural balance, why, then, is eugenic abortion also not unethical for upsetting the balance of naturally occurring disability as a part of the human condition. It’s late, so this is better expressed in this column of mine here: http://www.mercatornet.com/articles/view/my_daughters_paradoxical_genes
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