About being born

by Michael Bérubé on January 17, 2011

Well, things have been quiet around my house lately, except of course for the whole-house water filter that exploded two weeks ago while Janet and I were at the movies, drenching the basement with four inches of water (750 gallons, we learned from the nice young man whose powerful machines drained our house).  The water had just gotten within reach of the bottom of the spines of the books in one bookcase (does a book have a coccyx?), leaving a row of thinkers from Marshall Berman to Harold Bloom shrieking for help and drawing their knees up to their chests.  And of course Jamie lost a lot of stuff—Beatles books, art books, crayons, writing pads, pretty much anything that was on the floor (and there were many things on the floor).  But at least it was clean water, not like last time.  So there’s that.

And now that I’ve spent the weekend putting together new shelving and storage devices and tidying up in general, it’s time to pick a fight!  This time I’m over at the National Humanities Center blog, On the Human, complaining about bioethicists.  For example (from a discussion of Jonathan Glover’s book Choosing Children:  Genes, Disability, and Design):

This then is yet another version of the classic “trolley problem,” in which we are asked to decide whether it is better that people with X disability not be born at all (because the prospective mothers wait two months and have different children altogether) while some people with X disability go “uncured” in utero, or better that people with X disability be “cured” in utero while others are born with the disability because their mothers went untreated.I suppose this is the stuff of which bioethical debates are made, but may I be so rude as to point out that there is no such trolley? This thought experiment may be all well and good if the object is to ask people about the moral difference between foregoing a pregnancy that will result in a fetus with disabilities and treating a disabled fetus in utero (and miraculously “curing” it!). But it does not correspond to any imaginable scenario in the world we inhabit. (And there’s more: because, perhaps, “a disability is harder to bear if you know that people could have prevented it but chose not to do so,” [Derek] Parfit adds that “we assume that those born with the disability do not know they could have been spared it” [48]. Why not assume instead that those born with the disability are given a pony on their fifth birthday?) There simply are no known genetic conditions that present prospective parents with this kind of decision….


There is no scenario — I repeat, no scenario, none whatsoever — in which any woman knows that, if she foregoes conception now, she will have a normal child later on. Earlier in the chapter, in the course of demonstrating that some children’s disabilities truly do place crushing emotional burdens on parents, Glover had adduced the case of Julia Hollander, mother of a child with significant brain damage: “the cause of her problem was not genetic,” Glover notes. “When she was born, the placenta peeled away early, and this destroyed her cerebral cortex” (40). Yes, well: this is quite terrible, but it should at least give pause to bioethicists who concoct scenarios in which women decline to initiate a pregnancy now in the assurance that they will have a normal child if they only wait. The world in which bioethicists propose such things, the world in which [Frances] Kamm can chastise a woman who produces a “defective” child “when she could have easily (!) avoided it,” is a world without birth trauma, without conditions undiagnosable before birth (autism, pervasive developmental delay), without any sense of contingency — let alone an openness to the unbidden. Such trolley problems and what-if hypotheticals profoundly distort what it is like to contemplate having a child who may have a disability; indeed, they distort what it is like to have a child.

Just to be extra extra curmudgeonly, I’ll add that I don’t know why my contribution to the Forum is introduced by way of the opening statement “every life is sacred.”  Those who know me well know that I cannot utter the word “sacred” without my tongue cleaving to the top of my mouth; besides, I believe that the proper expression is that every sperm is sacred.  Seriously, folks, talking about the “sacredness” of life opens a hole in the argument big enough for Peter Singer and company to drive a bunch of trucks through.  But that’s only one of the reasons I don’t talk that way.

_____

In other news, I’m not really picking a fight in this comment thread on the recently-concluded convention of the Modern Language Association.  I’m just noting that someone is wrong on the Internet.

{ 86 comments }

1

John Quiggin 01.17.11 at 7:41 pm

It must be a conspiracy to flood out the members of CT, one by one.

2

chris 01.17.11 at 7:52 pm

There is no scenario — I repeat, no scenario, none whatsoever — in which any woman knows that, if she foregoes conception now, she will have a normal child later on.

Well, clearly. (Unless you count adopting a “normal” child — whatever you mean by that notoriously ill-defined adjective — as having one, which presumably the hypothetical mother doesn’t, or has other reasons for avoiding adoption, or she would have been doing that in the first place.) There’s practically nothing that can be diagnosed before conception — what are you even diagnosing?

However, there are a great many conditions that can be detected between conception and birth for which foregoing *birth* now can give you the opportunity to conceive again later, with roughly the same (high) probability of normality as any other conception (which is not a guarantee of normality but is very often treated as one).

And ISTM that the trolleyish sort of questions about giving up and trying again are generally dealing with conditions that are detectable after conception, but before birth [1]; is it better that those children be aborted and siblings without such a condition conceived, or that those children be carried to term and live and the siblings are never conceived? (Assuming that the total number of children the woman intends to have is the same in either scenario, which may not hold in practice.)

If you intend to have a generally applicable system for preferring one state of the world to another that can be used as an actual guide to behavior, then you can’t just throw up your hands at that sort of question but have to make some attempt to grapple with it (although an anti-realist can sidestep somewhat by saying that the answer is arbitrary, and therefore attempting to provide a definitive answer is misguided; a position that might be more appealing to more people if anti-realism weren’t simultaneously saying the same thing about, say, slavery).

[1] Although if neonatal infanticide were less intensely stigmatized in our society we might be including that in the debate too. The vast majority of parental effort in child-raising occurs after birth and it makes just as much sense to think of a newborn as “replacing” a sibling who will never be conceived as it does to think the same way of a fetus that might or might not be born in the future.

3

Michael Bérubé 01.17.11 at 7:58 pm

with roughly the same (high) probability of normality as any other conception (which is not a guarantee of normality but is very often treated as one)

Right …

(Assuming that the total number of children the woman intends to have is the same in either scenario, which may not hold in practice.)

Also right …

If you intend to have a generally applicable system for preferring one state of the world to another that can be used as an actual guide to behavior, then you can’t just throw up your hands at that sort of question but have to make some attempt to grapple with it….

And not right, I think. Because I’m not just throwing up my hands at Glover’s / Parfit’s question. I’m saying that the question makes no sense as a means to devising a generally applicable system for preferring one state of the world to another than can be used as an actual guide to behavior. The question in your previous paragraph — is it better that those children be aborted and siblings without such a condition conceived, or that those children be carried to term and live and the siblings are never conceived? — is a good question, but it’s not the question Glover and Parfit pose.

4

Brainz 01.17.11 at 9:43 pm

Bioethics suits Shaw’s wisdom: Those who can think ethically, do. Those who can’t think ethically, teach bioethics.

5

Thomas Jørgensen 01.17.11 at 9:51 pm

Well, since as the general rule, as written into law in most of the first world is that first trimester abortions are permissible for both any and no reason at all, then it follows that aborting one because testing indicates a medical problem with the fetus must also be permissible. Certainly it happens. A lot. Really a lot. The number of kids born with severe congenital diseases of any kind amenable to early screening is plummeting, because the answer of prospective parents put in the actual, as opposed to the hypotetical situation overwhelmingly that it is better to abort and retry, which as the technologies of prenatal diagnosis are rapidly improving is going to result in all genetical diseases more severe than colorblindness vanishing in about one generation, without a single gene being spliced.

Thinking too much about this gives me a headache because this outcome is eugenics without the bloodshed or coercion.. in fact, I dont see any way to prevent this “cleaning” of the genepool without pissing all over individual rights, nor can I see a logically sound reason to even try, as a healthier body politic must be a good thing, right? And now I feel dirty by association. Meh, could someone please perfect post-natal genetic reengineering so that this goes away?

6

dsquared 01.17.11 at 10:04 pm

I’m saying that the question makes no sense as a means to devising a generally applicable system for preferring one state of the world to another than can be used as an actual guide to behavior.

Yes. This. It’s come up a few times before – there is a big problem with a lot of moral philosophy of this kind when it comes to taking uncertainty seriously, and it always shows up in constructed perfect-information examples which pupport to assume away extraneous details while actually assuming away utterly essential details. It’s there in economics too of course – the whole field needs an equivalent of Nicholas Taleb, and also probably some defining world-shattering crisis to make them take him seriously.

7

Tim O'Keefe 01.17.11 at 10:08 pm

[Frances] Kamm, not [Florence] Kamm.

But why does Kamm think that? I presume it’s not for consequentialist reasons.

8

chris 01.17.11 at 10:25 pm

@5: Well, if the bad thing about the eugenics was the bloodshed and coercion, then achieving the same goal *without* bloodshed and coercion isn’t necessarily bad. Why should the historically applied means tarnish the ends by association? Many ancient buildings were built with slave labor, but does that diminish the beauty of the buildings? Or the very idea of building things (even without slave labor)?

I don’t think the change will be as rapid as you think, though — first of all, some people are ideologically opposed to such procedures, and some can’t afford them. Second, while the phenotype may be eliminated quickly, the genotype won’t — many genetic diseases only show up when homozygous, and few if any parents are going to abort heterozygous carriers, even if the tests can detect them.

Such trolley problems and what-if hypotheticals profoundly distort what it is like to contemplate having a child who may have a disability; indeed, they distort what it is like to have a child.

Are those intended to be different things? I thought part of your point against Glover was that any child you have *might* have a disability, and in some cases you don’t find out until it’s too late to abort (or the disability isn’t even created until birth or after, for non-genetic or partly-genetic conditions).

IMO, though, that doesn’t change the fact that “replacing” a fetus known to have condition X with a new fetus that might or might not (but in most cases probably won’t) is a pretty significant decision, and in some respects it does resemble a trolleycar problem, since one or the other of those potential people won’t exist as a consequence of your decision.

Maybe your point is just that from inside the situation it’s humanly impossible to achieve the detachment associated with armchair contemplation of trolley problems? If so, that’s probably true, but that seems to me to be an acknowledgment that human beings don’t make their decisions based on philosophy and logic — which surely everyone already knew.

9

chris 01.17.11 at 10:31 pm

Furthermore, to follow up on dsquared’s point: acknowledging the uncertainty associated with the new child doesn’t make the problem go away, because the decision is precisely to go from the known bad outcome (already-diagnosed disability) to an unknown outcome from a set biased toward no disability.

Trolleycar problems are often framed in terms of unrealistic certainty, but they don’t have to be; it just avoids layering complicated math on top of the philosophy (and I don’t think there are many probability/philosophy double majors, although I admit I haven’t checked).

10

EMG 01.17.11 at 10:35 pm

this outcome is eugenics without the bloodshed or coercion

Uh-uh. As adamantly pro-choice as I am in the individual instance, I don’t think it will do to describe abortion as “without bloodshed.” Even a pro-choicer has some sense that it’s better never to be conceived at all than to be conceived and aborted. Better, above all, for the woman. I may be eccentric, but I can tell you that if I had to abort for fetal abnormality (and it would take something a lot worse than Down syndrome), I’d be in no rush to get pregnant again. Abortion providers don’t work by waving a magic wand. There’s a procedure, and it’s not fun. Don’t act like the woman’s subjective experience is an afterthought. It’s actually very nearly the whole thing.

I also wouldn’t say that the situation you envision – universal selective abortion for all but the most trivial of abnormalities – is without coercion. In that situation, the availability and quality of clinical treatment for various conditions will first halt, then start moving backwards, then disappear. Now imagine you’re a woman with a fetus diagnosed with something no doctors anywhere near you (or none that you can afford) is able or willing to treat. Imagine seeking services for a population that no longer exists. Imagine how the neighbors will respond to the “irresponsible” mother of the only disabled child in the county or state, and imagine what that person’s life will be like once the parents are gone and assisted living has been erased from the books because “nobody” needs it anymore. Imagine the discussion the parents have with the geneticist or physician whose job it will inevitably become to transmit the new cultural norms. That’s not an uncoerced choice, not by a long shot. The only thing worse than not getting an abortion you need is being made to get one you don’t want. If we allow things to progress to that point, we’ll be in for an anti-choice backlash of Atwoodian magnitude.

11

ChrisB 01.17.11 at 10:53 pm

This isn’t anything new. The way Singerian bioethics works is that Singer constructs a hypothetical situation that leads to the practical solution he wishes to institute and then refuses to enter into any discussion on the facts of the situation on the grounds that that’s not his job. Beyond that, the history of the Persistent Vegetative State shows that when there’s a theoretical case that would, if it existed in the real world, save us all a lot of moral anguish that case becomes instantiated pretty bloody quickly. See my article at http://www.ncbi.nlm.nih.gov/pubmed/16350968:
“Before discussing ethical issues to do with patients in permanent (or persistent) vegetative state (PVS) it is necessary to address the foundational issue of whether PVS as a concept is able to provide a robust link to situations in the real world. The high reported rates of misdiagnosis and recovery in patients diagnosed as being in PVS casts doubt upon the applicability of ethicists’ thought experiments on Platonic forms to actual decision making in clinical situations. We should abandon the illusion that we can have access to logical certainty through diagnostic definition, and should instead frame our opinions and our procedures in ways that can accommodate a high element of uncertainty, and should in the light of recent studies give considerable weight to the possibility that patients, at present unable to express opinions on their care, will later become able to do so, if given proper treatment and adequate evaluation.”

12

Michael Bérubé 01.17.11 at 11:16 pm

Thomas @ 5:

The number of kids born with severe congenital diseases of any kind amenable to early screening is plummeting, because the answer of prospective parents put in the actual, as opposed to the hypotetical situation overwhelmingly that it is better to abort and retry, which as the technologies of prenatal diagnosis are rapidly improving is going to result in all genetical diseases more severe than colorblindness vanishing in about one generation, without a single gene being spliced.

As Chris says @ 8, it won’t be that simple — we won’t be living in the world of Gattaca by 2040, for precisely the reasons Chris suggests. The hard question is how to support abortion rights and women’s access to prenatal screening without giving in to the eugenic logic that we’d all be better off without people with autism, Down syndrome, congenital deafness, Huntington’s, etc.

Tim O’Keefe @ 7:

[Frances] Kamm, not [Florence] Kamm.

D’oh! Fixed. I got it right in the original post, tho. Apologies!

Chris @ 8:

Are those intended to be different things? I thought part of your point against Glover was that any child you have might have a disability, and in some cases you don’t find out until it’s too late to abort (or the disability isn’t even created until birth or after, for non-genetic or partly-genetic conditions).

IMO, though, that doesn’t change the fact that “replacing” a fetus known to have condition X with a new fetus that might or might not (but in most cases probably won’t) is a pretty significant decision, and in some respects it does resemble a trolleycar problem, since one or the other of those potential people won’t exist as a consequence of your decision.

Last thing first: yes, but that wasn’t precisely what Glover / Parfit were asking. Their question is much weirder; it’s predicated on a hypothetical in which (a) a woman might conceive a child with condition X because she has condition X herself, though it will go away in two months, and (b) you can “cure” condition X in utero, and (trolley) you have to screen for one condition or the other. Which brings me to dsquared @ 6, who reminds me that I should have said, when I replied @ 3, that hypotheticals like these actually help to reinforce the very mistaken idea that a conception / pregnancy that has no detectable “conditions” will be produce a “normal” child. The trolley problem simply wouldn’t work otherwise.

13

Substance McGravitas 01.17.11 at 11:31 pm

The hard question is how to support abortion rights and women’s access to prenatal screening without giving in to the eugenic logic that we’d all be better off without people with autism, Down syndrome, congenital deafness, Huntington’s, etc.

Why should I get to decide what the choice is based on?

14

Michael Bérubé 01.17.11 at 11:40 pm

While you were away, Substance, we elected you chair of the Committee on Human Reproduction. Quiggin was supposed to notify you, but he’s been busy with zombies.

15

EMG 01.17.11 at 11:45 pm

Why should I get to decide what the choice is based on?

Because if you don’t, someone else will; and by someone else I don’t mean the pregnant woman. The question isn’t whether you get to have an opinion; in any given individual case of course you won’t. But reality is that every individual is influenced by societal norms, and it’s your duty to do what you can to help norms evolve in the right direction.

16

Substance McGravitas 01.17.11 at 11:50 pm

That’s a good joke but I’m still not understanding the “support” regarding “the hard question”. Are you talking about law or talk or what?

17

Substance McGravitas 01.17.11 at 11:51 pm

Thanks EMG.

18

Thomas Jørgensen 01.17.11 at 11:51 pm

.. bloodshed possibly a poor choice of words. “Murder one” was what I was thinking of.
Do note that this is not an abstract senario I am envisaging, it is a reality we are quietly living through today. The abortion rate upon diagnosis of downs syndrome is well north of 90%, and yes, this is not costless. However, i do not see it stopping until rendered unnessesary by superior technologies.
Which, fortunately, is not very far off. –
People with known genetic ilnesses in the family already use IVF, then screen the embryos extremely early (at the ” countable on hands and toes number of cells” stage) and simply only implant the healthy embryos.
At the same time, the scanning the genome of an adult for known genetic diseases is also getting much cheaper very rapidly, which means that being the unknowing carrier of a genetic disease will soon be nigh-impossible, at which point you get the same result without the abortions, as any couple where genetic ilness in the child is a possibility will know and take steps… and yes, this probably will become a social norm, if not outright legally mandated, because deliberately conciving and implanting an embryo that will grow up to be severely disabled probably counts as child abuse.

19

Thomas Jørgensen 01.17.11 at 11:55 pm

.. Or to put it as bluntly as possible. “We damm well will be living in a world in some respects very much like GATTACA in 2040″… well, at least as far as serious genetic defects go.

20

Yrruk 01.18.11 at 12:20 am

Not specifically apropos the argument in the post, but more in the interests of providing a reminder that unmentioned positions of the spectrum continue to be occupied (that common sense or feeling are not shared, that ‘we’ is always contested, yada yada):

There are those of us who find abortion wholly unproblematic (wrt the fetus; EMG’s point about the mother’s feelings is well-taken), who enthusiastically endorse a world without autism, Down syndrome, congenital deafness, Huntington’s, etc., and who, unlike Substance, do not do so from a position of mere “choice” or any suspension of judgment, personal or political, but from the position of “good” (and, at least in one case, from the position of “right”: parents are obligated to undergo genetic screening and mothers are obligated to abort in these circumstances (of serious congenital disease)).

EMG (post 10): “The only thing worse than not getting an abortion you need is being made to get one you don’t want.”

How is it that an unfulfilled want (to not have an abortion) could be a greater harm than an unfulfilled need (to have an abortion)? Especially when in the latter case the consequence of ignoring that need is also (if not wholly) born by the child.

And of course we’re (or should be) aiming for that world you describe in your second paragraph, where the population of humans born with a congenital disease shrinks eventually from some to few, one, and then none. Even if it should remain forever at “few” we’d have reached a situation better than the present by leaps and bounds. I would love to be able to be the only one with a congenital disease (or more than one!) and I don’t know how I could consider myself anything but a monster were I to wish differently (not that wishes are efficacious, but in spirit).

21

EMG 01.18.11 at 1:16 am

How is it that an unfulfilled want (to not have an abortion) could be a greater harm than an unfulfilled need (to have an abortion)?

There’s a large range of things which I need to be free to not do unless I want to do them. If sexual and reproductive behavior and medical procedures aren’t in that range, nothing is. Your right to maximize social utility ends where my ladyparts begin.

I’m not even going to touch your eliminationist rhetoric and conflation of mental/communicative differences with unbearable suffering. Yech.

22

Randy Paul 01.18.11 at 1:45 am

does a book have a coccyx?

If it’s written by Sarah Palin, Glenn Beck, Bill O’Reilly, Rush Limbaugh or David Horowitz, it not only has a coccyx, but a rectum and sphincter as well.

23

John Holbo 01.18.11 at 1:48 am

“It must be a conspiracy to flood out the members of CT, one by one.”

And that’s why I’m thinking about registering the warpedboards.org domain name!

24

elaine 01.18.11 at 2:15 am

Aside from the chutzpah of arguing (#18, #2) that women should be forced to undergo surgery (abortion) in certain circumstances, these arguments all rely on genetic determinism. I’ll grant certain things have genetic certainty (Down’s, Huntington’s). But a lot of what is being discovered is that an adverse outcome depends on both a genetic propensity and an environmental trigger. Not to mention the very little we understanding about epigenetics. So a healthy baby with a propensity toward breast cancer might not, in fact, have breast cancer. And the one with the clean genetic slate grows up only to die of the disease, etc. Assuming there even exists a human without a genetic predisposition toward something, we actually have very limited understanding of genetics and disease expressions.

And even if we can absolutely know the genetics, will that tell us how lives turn out? Take the example of bipolar disorder. It tends to run in families (so presumably a genetic component), but not everyone has the disorder, and it is eminently treatable. Someone successfully treated for the disorder arguably will fare much better than a nominally healthy person who ends up being crippled by depression due to life circumstances.

Assuming genes are all really misses the point — we shape our genes just as they shape us.

25

Michael Bérubé 01.18.11 at 3:21 am

Elaine @ 24:

I’ll grant certain things have genetic certainty (Down’s, Huntington’s). But a lot of what is being discovered is that an adverse outcome depends on both a genetic propensity and an environmental trigger.

The astonishing thing — and it’s been continually astonishing to me for over 19 years now — is how uncertain Down syndrome is. People think it’s pretty clear-cut, ’cause it’s a huge biochemical mishap, a chromosomal nondisjunction; but the range of its actual expression, in actual human environments, is so vast that I refuse to make any generalization whatsoever about the quality of life of a person with Down syndrome. Autism is (if anything) still more nebulous and unpredictable. Which is why it’s so very, very foolish to go around thinking that the elimination of such conditions is an unambiguous species-wide good, like the elimination of, say, smallpox or malaria.

Substance @ 16: what EMG said @ 15. Sorry I wasn’t in the mood just then for a less facetious reply, but that’s really all I meant by “support.”

26

Substance McGravitas 01.18.11 at 4:36 am

Fairly far OT: BBC radio trolley-problem documentary. Apologies if it’s been referenced previously.

27

faustusnotes 01.18.11 at 6:50 am

I get the sense of a rhetorical trick being inserted into this discussion – with phrases like “eliminationist rhetoric” and

giving in to the eugenic logic that we’d all be better off without people with autism, Down syndrome, congenital deafness, Huntington’s, etc.

that seem to conflate the desire to eliminate disease with the desire to eliminate people with the disease.

You may disagree with people who want rid of these diseases, and you may think they have a shallow understanding of disability, etc. but that doesn’t mean you should use this kind of language about them.

I think these accusations of eliminationist rhetoric are intimately connected with the fact that the “treatment” is abortion. But a lot of people honestly believe that when you abort a foetus you are not killing anyone, therefore there is no eliminationist intention, and it is genuinely seen as a treatment. You may disagree with that but if you’re pro-choice you need to recognize that not everyone sees a foetus as a potential person, and they will have a different moral calculus about diseases that can only be treated in the womb. This doesn’t make them “eliminationist” though it may make them callous bastards.

28

sg 01.18.11 at 6:50 am

oh and sorry that was sg, random accidental input mistake.

29

J. Otto Pohl 01.18.11 at 7:04 am

I will certainly agree with Michael Berube that eliminaing malaria would be an “unambiguous species-wide good.” I am starting a job in Ghana at the end of the month and malaria is evidently a major health threat in the country.

30

Michael Bérubé 01.18.11 at 11:17 am

Substance @ 26: but surely the best discussion of “would you kill the big guy” is this classic from two of the Internet’s foremost moral philosophers.

31

Michael Bérubé 01.18.11 at 11:28 am

And faustusnotes @ 27: autism, Down syndrome, and congenital deafness are not “diseases.” As I’ve said many times before, sometimes on this very blog, conflating disability with disease is pernicious, and leads inevitably to the conclusion that all disabilities should be prevented or cured. Like diseases!

And yes, people who want to prune the species of autism, Down syndrome, deafness and so forth are subscribing to a eugenic logic. Making the species better — it’s good genics! But one of my points is that one can be in favor of mitigation, palliation, prostheses, pain medication, antibiotics, and anesthesia without succumbing to the belief that disabilities (a) are diseases and (b) should be eliminated from the species whenever possible.

But yes, every single time I bring up the subject of disability on the Interwebs, people show up to say “of course disabilities should be cured/prevented!” Sigh. My suggestion is that you talk to some people with disabilities about this, and get a wider range of informed opinion.

32

strategichamlet 01.18.11 at 12:29 pm

” “of course disabilities should be cured/prevented!” Sigh.”

Michael,

I think what people are saying is quite a bit more interesting than this. I’m hearing “if possible, people with disabilities should have the choice to cure them” and “parents (really the mother in all cases other than the what embryos to implant that came up earlier) should have the choice to prevent disabilities (or at least if technologically possible, there seems no ethical way of forbidding them from doing so)”. Choice seems like an important distinction. Will anyone here come out and say they are against giving someone the choice to be cured of, say cystic fibrosis, for example? Or that parents should not be allowed to screen for it? Does anyone object to the term “cure” when applied to cystic fibrosis? There are so many types of possible disability that I don’t know that one can just say “conflating disability with disease is pernicious”.

33

sg 01.18.11 at 12:32 pm

Michael, I’m using the language of the piece, please don’t take it to mean I agree or disagree with the disability-as-disease idea. I’m not in any case talking about that, but about the implicit link between abortion-based “remedies” and eliminationist rhetoric.

If, for example, the only way to eradicate actual diseases like polio or HIV were abortion (rather than treatment of adults) would you be arguing that people who favour this approach “think we’d be better off without those people” ? No, you’d argue that people who favour this approach think the world would be better off without that disease.

So I think you’d be better off arguing the thing you’re actually talking about – that autism isn’t a disease – and not bandying about loose language about people wanting to be rid of adults with autism. They’re unrelated in most peoples’ minds. (which isn’t to say that there aren’t people who do think it would be a good idea to do some old-fashioned eugenics on people with autism. But you should save the argument for those people).

(And the related process of immediately accusing people of not unerstanding people with disabilities just because they disagree with you could probably be given the flick too).

34

Tom Hurka 01.18.11 at 12:44 pm

Chris at #2 and #9 makes the main point that refutes the intial post: adding realistic probabilities would make no philosophical difference to the case while adding needless complexities. Decision-making under uncertainty is a perfectly general problem. To isolate what’s distinctive in e.g. reproductive ethics you should therefore first ask about cases involving certainty and then combine your answer with whatever the best general view is about choice involving probabilities.

Berube’s post manages to get both names wrong. Not only is it Frances (not Florence) Kamm, but it’s Jonathan (not Julian) Glover. Is this the vaunted “close reading of texts” that they teach in English departments?

These anti-trolley posts (see dsquared ad nauseam) are the most tedious feature of CT. Can someone say “enough”?

35

Walt 01.18.11 at 1:06 pm

Michael, it’s a bold choice over at the Chronicle website to use your social security number as your user name. It really expressed your alienation from our brave new world of impersonal databases track every single aspect of our lives without compassion or understanding.

36

Michael Bérubé 01.18.11 at 1:51 pm

strategic hamlet @ 32:

I’m hearing “if possible, people with disabilities should have the choice to cure them” and “parents (really the mother in all cases other than the what embryos to implant that came up earlier) should have the choice to prevent disabilities (or at least if technologically possible, there seems no ethical way of forbidding them from doing so)”.

I’m totally OK with hearing (and saying) that. But more on choice in a moment.

There are so many types of possible disability that I don’t know that one can just say “conflating disability with disease is pernicious”.

On my reading, it’s precisely because there are so many types of possible disability that it’s pernicious to consider all of them as diseases.

sg @ 33:

Michael, I’m using the language of the piece, please don’t take it to mean I agree or disagree with the disability-as-disease idea. I’m not in any case talking about that, but about the implicit link between abortion-based “remedies” and eliminationist rhetoric.

Um, what piece? The only person who has used the phrase “eliminationist rhetoric” (which you somehow ascribe to me) is EMG @ 21. And when you referred to “these diseases” @ 27, you did seem to be subscribing to the idea that disability is disease. My apologies if I misread that.

So I think you’d be better off arguing the thing you’re actually talking about – that autism isn’t a disease – and not bandying about loose language about people wanting to be rid of adults with autism.

OK, but I really do run across people saying that we’d be better off without people with autism. Happens all the time.

(And the related process of immediately accusing people of not unerstanding people with disabilities just because they disagree with you could probably be given the flick too).

Flicked! But I wasn’t saying that simply because you disagreed with me. I was trying to point out that people with disabilities have a wide range of opinions on whether their disabilities should be mitigated or eliminated or cured. And if deaf adults want to choose cochlear implants (to take one current debate), I say let ’em. Just as long as we don’t stigmatize people want to forego surgery and identify as culturally Deaf.

Tom Hurka @ 34:

Chris at #2 and #9 makes the main point that refutes the intial post: adding realistic probabilities would make no philosophical difference to the case while adding needless complexities. Decision-making under uncertainty is a perfectly general problem. To isolate what’s distinctive in e.g. reproductive ethics you should therefore first ask about cases involving certainty and then combine your answer with whatever the best general view is about choice involving probabilities.

Chris makes that point, yes, but only by substantially changing the question from one that Glover and Parfit ask to one that Glover and Parfit should have asked. See dsquared @ 6.

Berube’s post manages to get both names wrong. Not only is it Frances (not Florence) Kamm, but it’s Jonathan (not Julian) Glover. Is this the vaunted “close reading of texts” that they teach in English departments?

Ooooh, snap! I am totally pwned. For the record, the reason I got both names right over at On the Human (and on my syllabus) but mistyped them here is that I are a total ignoramus. Hurka FTW.

These anti-trolley posts (see dsquared ad nauseam) are the most tedious feature of CT. Can someone say “enough”?

No, the most tedious feature of CT, as is known throughout the length and breadth of the Internets, is the “I iz serious commenter this iz not serious thread” character of comments like this.

And Walt @ 35:

Michael, it’s a bold choice over at the Chronicle website to use your social security number as your user name.

The number that appears in that thread is 22036873. Is it my Social Security number? I am reminded of one my favorite lines from the film After Hours — “that’s not enough numbers, but okay.”

It’s my Chronicle subscription number, apparently. Do with that what you will!

37

qb 01.18.11 at 2:08 pm

Hurka seconded. “Hey everybody, let’s have a thread where we all misunderstand the point of thought experiments… again!” It’s not about seriousness; it’s about tedium.

38

chris 01.18.11 at 2:32 pm

And yes, people who want to prune the species of autism, Down syndrome, deafness and so forth are subscribing to a eugenic logic.

Well, yes, but not in the “eugenics through mass murder” sense, which is how eugenics got its bad name in the first place.

It’s not genetic improvement of the species *itself* that’s bad (at least, not if people can agree on what constitutes “improvement” — maybe fairly clear-cut for cystic fibrosis, not so much for the autism spectrum), but the means historically used to pursue that goal.

On the other hand, people with a particular condition (I would say autism, but it’s vaguely defined and probably only weakly genetic, so may not really be a fair example) may see themselves as a minority of sorts, and potentially one that is the victim of stereotyping and other unfriendly behaviors by the majority; and from that perspective a policy that aims to ensure that no one else with that condition will ever be born bears a disturbing resemblance to genocide.

Even though it’s not genocide through mass murder, the simple fact that it’s a plan for that minority to not exist in the future is… I don’t know a word for it, exactly, but I’m not surprised that it would piss off present members of the same minority, even if no direct action against them is intended. (And really, what are their lives going to be like after society has collectively decided that it is better off without people like them, but they’re still around? It seems likely to, if anything, intensify societal hostility against the remnant population. People who learned in school that that terrible disease was eliminated forever 50 years ago will be disturbed to be reminded that some 60-year-olds still have it.)

39

ajay 01.18.11 at 2:44 pm

And faustusnotes @ 27: autism, Down syndrome, and congenital deafness are not “diseases.”

What is the distinction between a disability and a disease? I’m honestly not seeing a clear line here. If congenital deafness isn’t a disease, is haemophilia?

40

ajay 01.18.11 at 2:48 pm

Even though it’s not genocide through mass murder, the simple fact that it’s a plan for that minority to not exist in the future is… I don’t know a word for it, exactly, but I’m not surprised that it would piss off present members of the same minority, even if no direct action against them is intended.

Which explains why Franklin Roosevelt hated Jonas Salk so much.

41

Bruce Baugh 01.18.11 at 3:05 pm

Michael’s point in #31 needs emphasizing. I’ve been reading some about different kinds of autism lately, and accounts by people who live with different kinds of it, and talk of eliminating it in the certain conviction that it’s just a nasty evil thing that of course we want to eliminate comes perilously close to being certain that of course we want to eliminate whatever it is that makes some people daydream a lot, or have an unusual sleep cycle, or be very much better at math than verbal communication. A lot of what’s confidently asserted about disabilities of all kinds is just wrong, combining outright ignorance with outdated information and a refusal to make any effort to find out what people with these various conditions are actually doing with their lives now.

Michael’s post a while back about how little we can expect when it comes to the lives of people with Down syndrome is very much in order here.

And surely one of the recurring lessons of history is that we can do with fewer grand decisions being made by people who don’t actually know what they’re talking about, and that it’s worth some effort to see that we are not being part of that problem.

Perhaps we could have a eugenic crusade against smug over-certainty.

42

Bruce Baugh 01.18.11 at 3:17 pm

Oh, the point I left out: a lot of things that are in some sense disabilities are hardships only because of lack of accommodation. Ignorant arrogant certainty that one’s own way is by far the best and only really healthy way of doing things is what makes the trouble, not a condition that makes part of one’s life not work the same way as the certain one’s.

People who haven’t had the experience themselves can sort of imagine it with a simple thought experiment. Suppose doors were designed that you could only pass through if you were more than 5′ 5″ tall, and less than 5′ 8″, and that this was overwhelmingly standard practice, and requests or demands for greater accommodation of height variation were treated as pandering to cripples, political correctness gone mad, and like that. A lot of the barriers to comfortable, productive, happy life for people with various disabilities aren’t actually any more sensible than that, it’s just that we grew up with them and seldom have to deal with the unnecessary barriers they put up, for ourselves or people we care about. But they’re not any more sensible or justified because of that.

All these thought experiments about the right conditions for cleverly planned abortions and such are basically distractions. They free the speculators from needing to take up uncomfortable, actually obtainable changes in quality of life for people here and now. They remove any burden to consider things like means of contact, when to structure schedules and how to go about it, office and public space layout and design, transportation assistance, and a lot else. Nope, we can just work out how to off the people with the problems or genetically engineer them into being white male cisgendered Christians healthy people like our wonderful selves.

43

chris 01.18.11 at 3:51 pm

@40: Yeah, that’s one of the other sort. I think it has something to do with the counterfactual “if I didn’t have this condition, would I still be me?” People with polio answer yes, but people with autism (AFAIK) answer no — they’d be someone else. That’s why people with polio might not mind, or even consider it an improvement, if nobody else had polio, but people with autism (might) see themselves as a besieged minority.

Cures have a similar issue — if your mental processes are sufficiently different from a “normal” person, then a cure is, in a sense, suicide (or murder) — there’ll be someone in your body afterward, but it won’t be you.

It’s a slippery question, though.

44

Bruce Baugh 01.18.11 at 3:59 pm

One of the ways the kind of thought experiment Michael is reacting to is misleading, by the way, is that it deals with static situations: this child has X, therefore its experience will be always and only Y, you may now make decisions based on that knowledge. But a lot of things aren’t like that. Very little of the autistic spectrum is, for instance – one of the distinctive features of a lot of kinds of autism is precisely a great deal of variability in experience. I have one of the porphyrias, and this and other auto-immune disorders are also often highly variable. What I need today may differ a lot from what I need tomorrow, and my range of needs this year isn’t much like the range of two years ago, or 13 years ago, or what may well be the case 5 years hence.

Accommodation therefore can’t be static either, and it’s certainly therefore more demanding than any fixed standardization. But that doesn’t make it unwise, or undesirable, nor (and this is crucial) impossible or even impractical.

45

Bruce Baugh 01.18.11 at 4:16 pm

One last thought for now, and apologies for the cascade of comments.

A crucial feature of accommodation is that it must allow for experimentation, and flat-out serendipitous discovery. Michael’s written about the kinds of surprises he and his family have made about dealing with Down, the stuff that works, the out-of-the-blue successes and failures, and so on. My life with coproporphyria (and diabetes and stuff) is much the same – a lot of the things that most help me came into my experience as accidents, or as trying out something out of bored frustration with prior alternatives that weren’t helping, or a suggestion from an alert concerned friend, or whatever. Part of good life with a lot of conditions is knowing that things will keep changing in unexpected ways – the exact opposite of the mindset behind a lot of these thought experiments.

46

ajay 01.18.11 at 4:34 pm

I think it has something to do with the counterfactual “if I didn’t have this condition, would I still be me?”

Mmmmaybe. But this sort of argument is used by (among others) deaf advocates, and I don’t think you could argue very convincingly that a deaf person would no longer be themselves if they stopped being deaf; or that a hearing person would no longer be themselves if they went deaf, for that matter.

47

Sajia Sultana 01.18.11 at 5:54 pm

Well, I have bipolar disorder, and the two boyfriends I’ve had had bipolar disorder and depression, and I’m a Muslim woman living in a world that is hostile to practicing Muslim women who aren’t Hirsi Ali, so I’m pretty sure my children will have some sort of depressive tendencies. But I’m managing quite well, I just released an album and have joined a professional dance troupe, and I am reluctant to cure my disorder because it seems to be connected to the Romanticist nature of my creativity, although I am now trying to move into a more Classicist mode. So I fear that if I prevent bipolar disorder in my children I’ll suppress their creativity, and I would rather have them learn to deal with problems, which is what life is supposed to be about. I do know not all people with bipolar disorder feel that way – fancy that, people with the same problems have different solutions to those problems! I have a dear friend who is hard of hearing, and I certainly don’t think she should have been aborted, although she might have because her family is poor and they certainly wouldn’t have been able to afford genetic treatment.

48

Dave 01.18.11 at 6:24 pm

Oh man, the comments at the thing on the Chronicle, I have never vomited so much in the course of reading a comment thread. With every rhetorical flourish indicating the author must ahem take issue with the characterization of etc., I vomited and died. Academics, geez.

49

mds 01.18.11 at 7:09 pm

leaving a row of thinkers from Marshall Berman to Harold Bloom

There’s a thinker named Harold Bloom, too? That must gall the guy at Yale.

Anyway, given that (in the US at least) so many of the people who are against accommodation of people with disabilities are also against substantial funding for biomedical research and in favor of forced pregnancy, it seems that the criticism of the intentions of those who might want to minimize the (still usually involuntary) occurrence of disease and disability in the long term is not completely on point. I’m all for devoting many more resources to accommodation, palliative care, educational programs, etc, etc, etc, while also working towards the eventual removal of the need for it in as many cases as possible. I’m still not seeing how intrinsically horrible it would be if someday there weren’t people with Huntington’s, especially since it tends to involve dementia. How is a cognition-degrading condition primarily of middle age an essential part of someone’s personhood?

Regardless, I think we’re still pretty far away from a world in which “fixes” for all disabilities are actually universally available. And if we don’t make a lot more progress on being more tolerant and accommodating of diversity in people and their choices, we’re probably not going to get there, because our civilization will finish collapsing first.

Also, more cities need to bring back trolleys.

50

chris 01.18.11 at 9:42 pm

In case my posts at 38 and 43 weren’t sufficiently clear on this point already, I never intended the “people with X see themselves/each other as a minority, possibly persecuted” concept to apply to absolutely every condition that might possibly be characterized as a disease or disability (whatever distinction one might attempt to draw between those two words).

But it’s definitely an issue that needs to be considered, IMO. (The point about lack of genetic determinism is also an excellent one, but it varies from condition to condition.)

51

Bexley 01.18.11 at 10:03 pm

Armand Marie Leroi wrote an interesting article in 2006 in Nature about how the future is going to be like Gattaca. (Paraphrasing somewhat – he talks about increased conception through IVF and screening for genetic problems during the process).

http://www.nature.com/embor/journal/v7/n12/full/7400860.html

52

Bexley 01.18.11 at 10:10 pm

“Second, while the phenotype may be eliminated quickly, the genotype won’t—many genetic diseases only show up when homozygous, and few if any parents are going to abort heterozygous carriers, even if the tests can detect them.”

Following on from Chris at 8 – another reason why we might not end up in a Gattaca like world is heterozygote advantage. The famous example being sickle cell anemia – those with one sickle cell allele have higher relative fitness than either those with no or with two sickle cell alleles.

53

ChrisB 01.18.11 at 10:24 pm

“Decision-making under uncertainty is a perfectly general problem. To isolate what’s distinctive in e.g. reproductive ethics you should therefore first ask about cases involving certainty and then combine your answer with whatever the best general view is about choice involving probabilities.”
No,
(a) that’s not how the world works. Phrasing hard cases in terms of certainty is almost invariably not a stage in a process towards a conclusion, it’s a rhetorical counter in support of a conclusion.
(b) that’s not a very profitable deductive strategy where the initial problem arises largely from the uncertainty. My optimum investment strategy if I was able to predict the future really doesn’t help with my search for an optimum investment strategy.

54

Dingbat 01.18.11 at 11:00 pm

mds raises an important point by reminding us that “(in the US at least) so many of the people who are against accommodation of people with disabilities are also against substantial funding for biomedical research and in favor of forced pregnancy,” but doesn’t inquire as to their motivations, and I think that there are two points that can be raised here.

First off—and this is a tangled moral theology, but as the discussion above shows, there are many tangles in the left’s moral theology as well (moral theology is hard. duh)–there are at least two large principles at stake: meaningful suffering, and an unwillingness to redefine what is human.

Second–if you hang out with conservative Americans, I think you’ll find that they are not against accommodation, but rather aim for accommodation to occur on the level of the family and the local community. To band together as a parish, for example, and build a wheelchair ramp for so-and-so confined to a wheelchair, is a beautiful thing.

This is all tied up in a vision of society where one loves and trusts and makes large sacrifices for one’s own. There is a rationalist argument on the left that, well, we can all make a small sacrifice, pitching in an extra half a percent of our income in taxes, and build wheelchair ramps for all public buildings, but that, sensible as it may be, does not have the emotional appeal of asking everyone in a small group to make a large sacrifice for a person whom they know.

I don’t want to derail the discussion into Right and Left visions of society, but since some of these elements are present in all our thinking (protection of our own children, for example, fits far more comfortably into the Right’s than the Left’s vision) it may be worthwhile to lay out in broad strokes an alternative framework just to see what certain events look like from another perspective.

55

LFC 01.18.11 at 11:39 pm

— leaving a row of thinkers from Marshall Berman to Harold Bloom–

There’s a thinker named Harold Bloom, too? That must gall the guy at Yale.

OT, but I think this is rather unwarranted. I’ve read very little Bloom. However, I have a general policy against being nasty to those who appreciate Iris Murdoch (as Bloom does).

56

Substance McGravitas 01.19.11 at 12:16 am

There is a rationalist argument on the left that, well, we can all make a small sacrifice, pitching in an extra half a percent of our income in taxes, and build wheelchair ramps for all public buildings, but that, sensible as it may be, does not have the emotional appeal of asking everyone in a small group to make a large sacrifice for a person whom they know.

The case of autism is lately counter to that: it’s getting harder to find people who don’t have a relative or a friend with a kid on the spectrum. Justifying services to those on the spectrum may help justify services for others.

57

Gene O'Grady 01.19.11 at 1:46 am

Dingbat, I know anecdote, or personal experience, is not evidence or argument, but since you mention parishes I can say in my rather extensive experience of a couple of Catholic parishes that to a large extent (there are quite generous Catholic conservatives, but they’re usually quite, and perhaps the more effective for that) it is the conservatives in those parishes who resist the construction of ramps or catechism for Downs syndrome kids or other attempts at accommodation within the parish structure on such grounds as that it’s not really what the church is supposed to do.

On the other hand, I suspect most Mormons and some evangelicals have a better record on these issues.

58

lemmy caution 01.19.11 at 2:22 am

Here is a discussion of parfit’s example:

http://plato.stanford.edu/entries/repugnant-conclusion/

Parfit was led to the Repugnant Conclusion by his considerations concerning how we ought to act in cases where our decisions have an impact on who will exist in the future. Consider the following two scenarios (see Parfit 1984 chapter 16):

A pregnant mother suffers from an illness which, unless she undergoes a simple treatment, will cause her child to suffer a permanent handicap. If she receives the treatment and is cured her child will be perfectly normal.
A woman suffers from an illness which means that, if she gets pregnant now, her child will suffer from a permanent handicap. If she postpones her pregnancy a few months until she has recovered, her child will be perfectly normal.

What ought the women to do in the two cases? In case (1) the obvious answer is that the mother ought to undergo the treatment since her actual child will thereby get a better life. However, it is problematic to appeal to this kind of reason when we turn to case (2). If the woman postpones her pregnancy, then the child that is brought into existence will not be identical to the child she would have had, had she decided to become pregnant while she was ill (it will not be the same ovum and sperm that meet). Hence, the alternative for the child brought into existence during the mother’s illness is non-existence, and to claim that it would have been better for this child if the mother had postponed pregnancy is tantamount to claiming that non-existence would have been better for her. Assuming that the child has a life worth living, this seems wrong if not nonsensical

59

Patrick D 01.19.11 at 4:17 am

One of the keys here, which I think has been approached in a couple of comments above, is that we shouldn’t really be thinking about reducing disease or disability. We should be thinking about reducing suffering. My intuition is that people with Down Syndrome or one of the autisms don’t suffer because of their disability, but because of the response their disability elicits (fear, anxiety, stigma) or fails to elicit (respect, love, accommodation). In other words, it’s not about them, it’s about us.

On the other hand there are other situations where the condition entails suffering. Polio, for example, or any number of genetic conditions. Those we want to eliminate and rightly so.

Of course most real cases aren’t so clear cut, as the example of bi-polarity shows. I know people in my family who have it who would be glad to see it gone, especially if that spared their kids. But I know people who accept it and their acceptance gives it meaning.

The thing about “cure” is that it’s usually illusion and it’s almost always easier than accommodation. Which is why it’s often the lazy or selfish way out, at least for me.

60

Michael Bérubé 01.19.11 at 5:25 am

I should be in bed, but someone asked a question on the Internet. Ajay @ 39:

What is the distinction between a disability and a disease? I’m honestly not seeing a clear line here. If congenital deafness isn’t a disease, is haemophilia?

There is no clear line. Some disabilities have disease etiologies, some do not. Some diseases are disabling, some are not (or are gradually degenerative, like multiple sclerosis, or late-onset, like Huntington’s). I raise the question in order to ask which conditions can plausibly (and uncontroversially) be mitigated or cured, and which conditions are better addressed by means of social policy and reasonable accommodation. But honestly? The problem of how to think about the relations between disability and disease makes my head hurt. So, of course, I think about it all the time. Suggestions welcome, which is why I went after Glover’s “fighting cancer” example.

Bruce Baugh @ 41:

A lot of what’s confidently asserted about disabilities of all kinds is just wrong, combining outright ignorance with outdated information and a refusal to make any effort to find out what people with these various conditions are actually doing with their lives now…. And surely one of the recurring lessons of history is that we can do with fewer grand decisions being made by people who don’t actually know what they’re talking about, and that it’s worth some effort to see that we are not being part of that problem.

As they say on blogs, this. Also, for ChrisB @ 53, this also too. And then Bruce again @ 45, and no apologies necessary or accepted:

Part of good life with a lot of conditions is knowing that things will keep changing in unexpected ways – the exact opposite of the mindset behind a lot of these thought experiments.

Yep. Which is why (to start yet another fight) I find antifoundationalist pragmatists more open to surprise and change than foundationalist anti-pragmatists. I think this is what Sandel means by “openness to the unbidden,” and his related argument that our sense of freedom paradoxically diminishes the more we think we can (a) engineer our children’s chances for flourishing and (b) (though this is me more than Sandel) craft thought experiments that rely on hypothetical forms of certainty.

61

sg 01.19.11 at 8:00 am

Michael, for those people who honestly think that the world would be better off without people with autism, then of course you should apply the accusation of eliminationist rhetoric. But for the rest (I hope the majority) of people who just don’t accept (or aren’t aware) that people can be perfectly happy with a disability, then I think it’s really important not to assume that they’re eugenicists just because abortion is in the picture.

lemmy wrote

Hence, the alternative for the child brought into existence during the mother’s illness is non-existence, and to claim that it would have been better for this child if the mother had postponed pregnancy is tantamount to claiming that non-existence would have been better for her. Assuming that the child has a life worth living, this seems wrong if not nonsensical

but this seems to me like a subspecies of the same specious confusion that arises from hidden insecurities about abortion and the sentience of foetuses. It’s a nonsense to propose that every ovum is a potential person. Surely under these conditions we should require that women do their utmost to become pregnant from every available ovum? This woman might decide she doesn’t want to impregnate this month’s ovum because she’s got a big meeting next week… but what about the potential child whose life she has dismissed with this callous and selfish action?

One thing these thought experiments certainly show up is a lot of confusion and uncertainty about abortion and “potential life.”

62

ajay 01.19.11 at 9:48 am

There is no clear line. Some disabilities have disease etiologies, some do not. Some diseases are disabling, some are not (or are gradually degenerative, like multiple sclerosis, or late-onset, like Huntington’s). I raise the question in order to ask which conditions can plausibly (and uncontroversially) be mitigated or cured, and which conditions are better addressed by means of social policy and reasonable accommodation. But honestly? The problem of how to think about the relations between disability and disease makes my head hurt

OK, that makes sense. I was just worried that there was some clear, generally accepted distinction between disability and disease that I didn’t know about. But if Berube is unclear, who can aspire to clarity?

63

chris 01.19.11 at 2:17 pm

@61: and furthermore, no matter which decision the woman makes, one of the two potential children will never exist, which is what makes it resemble a trolleycar problem. And this isn’t entirely a case of uncertainty either: a child who is never conceived will quite certainly never exist. (The quality of life of either potential child is, of course, highly uncertain. But they’re not the same bundle of possible outcomes, so they can still be compared to each other.)

There’s no way to avoid comparing “life for A, never having existed for B” and “life for B, never having existed for A” other than to give up on having anything to say about that kind of decision.

If you take a Rawlsian approach and don’t know in advance which person you’re going to be, can you assume that you’re the person that exists in each case? I think y0u can, since a 50% chance of nonexistence and 50% chance of outcome-distribution X is preferable to 50% nonexistence, 50% outcome-distribution Y precisely when X is preferable to Y. ISTM that this avoids the problem of comparing nonexistence to existence (at least in this specific case).

64

Norwegian Guy 01.19.11 at 4:39 pm

I have a bit trouble understanding Dingbat at comment no. 54. Or perhaps it’s just the conservative Americans I don’t understand.

But wheelchair ramps for all public buildings can’t possibly cost 0.5% of GDP. Do you mean half a percent of income in taxes every year, or as a one-time cost?

It makes perfectly sense to me to demand that new or extensively remodeled buildings can be accessible to people with disabilities. Compared to the overall cost of construction, this must be a very minor cost. Or why not just have the entrance at the street level? Doesn’t seam like an issue of left-right politics to me.

In addition, a wheelchair ramp is not only useful for disabled persons, but for other purposes as well. For instance, when transporting goods with a hand truck. More importantly, the largest group of user may very well be a core conservative constituency – elderly people with rollators!

65

chris 01.19.11 at 4:57 pm

More importantly, the largest group of user may very well be a core conservative constituency – elderly people with rollators!

Those *are* disabled persons, aren’t they? Their disability is being unable to walk for sustained periods without experiencing unusual levels of either fatigue, pain, or both (compared to the young or middle-aged people for whom most buildings are designed). Just because it’s an age-related disability doesn’t make it not a disability.

66

Norwegian Guy 01.19.11 at 5:08 pm

You’re right, Chris. Age-related disabilities are disabilities too.

67

ajay 01.19.11 at 5:09 pm

But wheelchair ramps for all public buildings can’t possibly cost 0.5% of GDP. Do you mean half a percent of income in taxes every year, or as a one-time cost?

Back of the envelope time – take a town with 10,000 people and a GDP per capita of $30,000 – the town’s economy’s worth $300 million a year. Half a percent of that is $1.5 million. It’ll have, say, four schools, a fire station, a police station, a town hall, a medical centre, etc. I reckon it would cost well over $1.5 million to put ramps into all of those. (Not just the entrances, remember, but everywhere inside as well; you’ll need ramps and/or powered lifts on the staircases.) It wouldn’t cost that much every year, of course, but as a one-off spend that’s probably rather conservative.

His wider argument is odd, but that’s a different point.

68

roac 01.19.11 at 5:12 pm

It makes perfectly sense to me to demand that new or extensively remodeled buildings can be accessible to people with disabilities.

Speaking broadly, US law has required just that since 1990, in Title III of the Americans with Disabilities Act. If you are interested in the details, a summary is here. Incidentally, the first President Bush personally overrode formidable resistance from the right wing of his administration to get this law passed. My information about this is secondhand, but authoritative.

Apartments are covered by a different law (the Fair Housing Act), which applies to all ground floor units in buildings of four or more units, and all units in buildings with elevators. To speak broadly, again, a person in a wheelchair has to be able to get into the apartment and all parts of it. (But if you need something like a roll-in shower, you have to pay for it.)

69

roac 01.19.11 at 5:28 pm

No. 67 went up while I was composing my last. Ajay’s examples are public facilities, which are covered by Title II of the ADA — Title III applies to privately-owned commercial buildings. The basic principles are the same for both:

New buildings have to be accessible;

If you do substantial renovations to a building, you have to make the renovated parts accessible;

If you aren’t renovating, you have to do whatever you can do cheaply to make the building accessible (the term of art is “readily achievable”). A ramp at the (or an) entrance is almost always in this category.

The major court fight over the scope of Title II, BTW, is whether you have to put in curb cuts when you repave a street. The courts have said you do. Curb cuts are pretty much omnipresent where I live and where I work by now, to the great benefit not only of people with wheelchairs or walkers, but parents with strollers, cyclists, people with rolling suitcases . . .

(A further BTW: I bet it is hard to find a medical building that is not fully accessible, covered by ADA or not, because of the user population.)

70

Steve LaBonne 01.19.11 at 5:54 pm

Yep. Which is why (to start yet another fight) I find antifoundationalist pragmatists more open to surprise and change than foundationalist anti-pragmatists. I think this is what Sandel means by “openness to the unbidden,” and his related argument that our sense of freedom paradoxically diminishes the more we think we can (a) engineer our children’s chances for flourishing and (b) (though this is me more than Sandel) craft thought experiments that rely on hypothetical forms of certainty.

Hear, hear.

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Bloix 01.19.11 at 6:16 pm

The logic that accords a value to “potential children who will not exist” carries us to the position that all women have a moral obligation to become pregnant at 14 and to bear a child a year until menopause. It is ridiculous to argue that the “quality of life” for the 20-some children that she won’t have must be weighed against the “quality of life” for her and the two children that she will have.

It should be fairly uncontroversial that a woman and her partner have no obligation to bear a child at any time unless they want to. The child that won’t exist because a woman wants to finish school before she has a kid, or because she’s not sure her partner is the man she wants to father her child, or for whatever other reason she may have, is a not a child. Therefore its hypothetical interests are not interests. Human beings have interests, rights, and obligations. Imaginary creatures do not.

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Steve Nordquist 01.19.11 at 7:54 pm

Those situations are common; workers subject to petroleum leaks, confined space working conditions, badly kept kitchens…though I see it’s postulated just the women (who mind, like men avert thinking of themselves as on track for conception in the context of their particular job stress) come to mind. That said, the trolley extending up through medical theory and into the puffy strata of practice, in state-affiliated (let’s say it’s SC) hospitals, (until we’re looking at leaks and confinement all over again) is almost always hypothetical without the hospitaler.

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Michael Bérubé 01.19.11 at 8:17 pm

The logic that accords a value to “potential children who will not exist” carries us to the position that all women have a moral obligation to become pregnant at 14 and to bear a child a year until menopause. It is ridiculous to argue that the “quality of life” for the 20-some children that she won’t have must be weighed against the “quality of life” for her and the two children that she will have.

Yeah, I totally don’t get that moral calculus either. I’m supposed to weigh the quality of life of child “A” against the hypothetical quality of life of a being “B” never conceived?

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Caveman's Anti-defamation Council of America 01.19.11 at 9:01 pm

IMO, the fetal/embryonic (?) ‘defect’ is not fully ‘cured’, unless the underlying ‘genetics’ is also cured. Unfortunately, genetics are always a factor in a defect (though at only ridiculous level in the case of congenital defect caused by injury, such as vehicle accident)

Though i wonder if AI consciousness with desire for physical existence will make this all irrelevant. In hopes of gaining pathetic type of immortality in the history of the future kind, I’ll add: “hi there!” to this digital cave-painting

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chris 01.19.11 at 9:24 pm

@71,73: I sort of agree, but if you’re not considering quality of life for beings not conceived, what about beings conceived but not yet born? That’s where this whole thread started, isn’t it? Deciding whether to abort a fetus diagnosed with some genetic condition (disease, disability, or whatever) and conceive another that may not have the same condition, and how you ought to frame that question if you want to think about it instead of just gut-reacting?

That pretty much forces you to compare “A will exist, B won’t” with “B will exist, A won’t” since those are the predictable parts of the outcomes of the decision you’re faced with. (There’s also the option of aborting and not trying again, but presuming you had some reason for wanting to reproduce in the first place, that’s probably not going to be satisfactory.)

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Salient 01.19.11 at 9:38 pm

I’m supposed to weigh the quality of life of child “A” against the hypothetical quality of life of a being “B” never conceived?

Perhaps one could reasonably (I think “is supposed to” is too strong) weigh the projected quality of life a child would experience if one happened to develop from zygote “A” against the hypothetical quality of life a child would experience if one happened to develop from zygote “B” … uh, but maybe I’m misreading your response to Bloix as facetious/antagonistic when I ought to be reading it as sincere/complementary.

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Salient 01.19.11 at 9:41 pm

I sort of agree, but if you’re not considering quality of life for beings not conceived, what about beings conceived but not yet born?

With the caveat that I might be misreading: there’s a big difference between “if this child existed, it would have value Y” versus “because this child will not come into existence in scenario 2, it has value -Y in scenario 2.”

(I think one of Bloix’s points is, we shouldn’t do the latter. Former’s ok.)

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chris 01.19.11 at 10:05 pm

The whole concept of quantifying and comparing value like that seems slippery enough that I’m worried it’s only providing a veneer of pseudo-objectivity, but if so, I have no idea what’s underneath. (The abyss of moral epistemology, most likely. Are any moral statements true, and if so, how can you find out which ones?)

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lemmy caution 01.20.11 at 12:07 am

“the position that all women have a moral obligation to become pregnant at 14 and to bear a child a year until menopause. “

This is pretty much the conclusion that parfit finds as the inevitable consequence of utilitarianism and a few reasonable sounding assumptions.

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Bloix 01.20.11 at 5:35 am

#76 – “what about beings conceived but not yet born?”

If you believe that abortion on demand is a right, then you must necessarily believe that foetuses are not people and have no right to be born and no interest in being born.

You can’t have a morality that says that it’s moral for a woman to have an abortion because she wants to finish her dissertation before she has kids, but it’s immoral for her to have an abortion because she caught German measles during her first trimester.

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sg 01.20.11 at 8:57 am

… and this is why the debate (and these trolley problems) gets so caught up in emotion, because people are confusing the means (which they’re uncomfortable with) with the end (eliminating disability). If the treatment for these disabilities were a mere vaccine, then people would be arguing directly about whether the disabilities in question need to be eradicated, contrasting them with diseases etc. But for some reason, because the treatment involves abortion everyone suddenly thinks that the aborter believes that all existing children with the disability would be better off dead. Or that the world would be better off without them (to use Michael’s point above).

IMHO, this is a leap of logic that says more about the attitude of the leaper towards abortion than it does about the attitude of the aborter towards the disability.

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chris 01.20.11 at 2:42 pm

If you believe that abortion on demand is a right, then you must necessarily believe that foetuses are not people and have no right to be born and no interest in being born.

Actually, no; it is sufficient to believe that even if they are people they have no right to compel their mothers to endure 9 months of pregnancy and the accompanying risk of permanent injury or death for their benefit if the mothers do not choose to do so. The fact that the alternative is death (for the fetus) is just one of those unfortunate features of the universe. It’s the same general principle as no compulsory organ harvesting — there are some things you just can’t have a right to demand of someone else, even if you’ll die if you don’t get it.

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mpowell 01.20.11 at 5:20 pm


If you believe that abortion on demand is a right, then you must necessarily believe that foetuses are not people and have no right to be born and no interest in being born.

I feel the need to chime in here and agree with Chris. This is a relatively common misunderstanding in this debate. One argument for defending abortion on demand is that fetuses have no rights. But a more general one is that their rights are trumped by the mother. Of course, there could be consequences for the specific types and timings of abortions that are available depending on which argument you accept, but both are available.

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czrpb 01.20.11 at 9:14 pm

so that you/he/Michael can point here to say: See?! See!! Those people DO exist!!

AND to add to the hypotheticalness of things here: i have often wonder what you/he/Michael believe about self-perception and identity: say that you/he/Michael was hit with brain cancer such that small parts of your/his/Michael’s brain needed to be removed, until you/he/Michael had no brain left (and kept “alive” on machines): would you/he/Michael ever refuse treatment and stop?

if so why and when? when would you/he/Michael believe you/he/Michael was no longer “yourself/himself/Michael’s-self”? and if so, ought you/he/Michael just change your/his/Michael’s self-perception and identity?

now even though i will be seen as a right bastard for questioning at all, all this applies to the “disabled” ’cause they are people to: they/we all have our identities and this is where i (feel i) am right there with you/him/Michael: our selves are all equally important (to ourselves).

BUT (of course eh?): how can you feel you are you because of what you think, do, and can think and can do? i mean those crazy free-climbers who say: “if I could not climb I would just die!” are a$$hats yes? are they not insulting the (us) ground-bound? why you/he/Michael do(es) not conform to the desires of those who love him about how he might change is/are you/he/Michael just being selfish? there really is no you/he/Michael yes? because if so, then you are valuing one type of existence above another: which is wrong and impossible.

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Bloix 01.20.11 at 9:38 pm

A right is by definition an interest that society will vindicate ( eg through the courts) over another interest in certain circumstances. A right that is always trumped in all circumstances is no right at all. If you believe in abortion on demand then you must accept that the foetus has no rights.

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chris 01.20.11 at 10:11 pm

In some systems of rights (and even laws), a fetus has a right not to be wrongfully* afflicted with lasting injury or disease, even if it doesn’t have the right to not be aborted; and that right can be enforced after birth. Although if the injured fetus *is* aborted or stillborn for reasons unrelated to the fetal injury, the courts would likely hold that no real injury had resulted.

[*] “Wrongfully” here is shorthand for the usual requirements of causation, negligence or voluntariness, etc.

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