Humans, Disabilities, and the Humanities?

Bioethics is much too important to be left to bioethicists.

At the outset of his 2006 book, Choosing Children: Genes, Disability, and Design, Jonathan Glover asks:

Progress in genetics and in reproductive technologies gives us growing power to reduce the incidence of disabilities and disorders. Should we welcome this power, or should we fear its implications? (1)

The answer, over the next 115 pages, comes out to be something like “welcome this power, with some reservations”; notably (and sensibly enough), Glover rejects the idea that there is a bright line between using genetic technology to restore or maintain a person’s “normal” level of functioning, and using genetic technology to enhance functioning well beyond that level. His book thus could be seen as a reply to (or, at the very least, I teach it alongside) Michael Sandel’s The Case Against Perfection, which makes precisely that argument against “designer babies.” For Sandel, going beyond that “normal” level, blurry as the line might be, violates something important about our humanity: borrowing from theologian William F. May, Sandel insists that we must retain our “openness to the unbidden” (45), and that the attempt to extend our mastery over uncertainty paradoxically diminishes our freedom. Glover, by contrast, suggests that “eliminating a genetic disposition to shyness or laziness might help someone flourish, as might making them more cheerful or boosting their ability to sing or to learn languages” (75–76). “It is common,” he writes, “to say that genetic choices are acceptable when they are to avoid a disability or disorder, but objectionably ‘eugenic’ if they are to enhance ‘normal’ functioning. The medical boundary may seem the obvious line to defend against ‘designer babies.’ But making some enhancements may add to flourishing as much as eliminating some disabilities. If we are not motivated by the ugly attitudes [toward disability], if what we care about is really not disability but flourishing, the medical boundary may be impossible to defend” (36).

Two things strike me as remarkable about Glover’s book. The first is that he does not come to this conclusion without taking into consideration a wide variety of accounts of the lives of people with disabilities. For instance, even though he begins a discussion of blindness by writing, “since sight enriches our lives so much, it is hard not to see blindness as an obstacle to flourishing” (17), he proceeds to recount the stories of John Hull, whose terror at going blind was gradually replaced by a wholly new sense of himself and his world, and of “S.B.,” who became severely depressed after an operation restored his sight. “When blind he had lived with energy and enthusiasm,” writes Glover, “but when given sight he lost his peace and self-respect” (21). Glover’s opening chapter begins from the premise that “since the 1980s, ethical debate about disabilities and disorders has been transformed by the participation of those who have these conditions” (4), and credits the disability rights movement with having “brought out the extent to which society’s response to a medical condition contributes to whether or not it is a disability” (4). The second remarkable thing is that despite this careful consideration of the disability studies critique, Glover can nevertheless write, in a later chapter, “in this book disability has been contrasted with human flourishing” (88). Obviously, if your goal is to enhance human flourishing, and you see disability as inimical to flourishing, there is no way to account adequately for the ways in which people with disabilities might enjoy their lives more fully and thoroughly than people without disabilities.

How does Choosing Children do this? How does it credit people with disabilities for having transformed the debate, and then wind up back in the pre-transformation position of arguing that disabilities are to be contrasted with human flourishing? I think there are two distinctive problems with the book. One is that, like so many discussions of disability and bioethics, it conflates disability and disease at a key moment in the argument. The other is that it relies, at other key moments, on thought experiments and hypothetical questions that make no sense except in the “what if” world of bioethicists.

The first key moment involves Glover’s dismissal of the “expressivist” argument: “Choosing to have a child without certain disabilities need not come from any idea that disabled people are inferior. Nor does it entail that the world, or the gene pool, should be cleansed of disabled people” (28). This much is true; some prospective parents might feel, reasonably enough, that they are ill-equipped to raise a child with certain disabilities, and that this is more a judgment on them than on anyone with such disabilities. Moreover, Glover argues that we can contest the “ugly attitudes” toward disability so that such decisions about childbirth are not motivated by fear, prejudice, or stigma. Here, however, is whether the argument gets knotty.

I think that, other things being equal, it is good if the incidence of disabilities is reduced by parental choices to opt for potentially more flourishing children. But we should not deny the potential cost to which the expressivist argument draws attention. And we should try to reduce that cost as far as possible.

To do this, we need to send a clear signal that we do not have the ugly attitudes to disability. It is important to show that what we care about is our children’s flourishing; that this, and not shrinking from certain kids of people, or some horrible prospect of cleansing the world of them, is what motivates us. To think that a particular disability makes someone’s life less good is not one of the ugly attitudes. It does not mean that the person who has it is of any less value, or is less deserving of respect, than anyone else.

There are two ways in which we can show this. One is by making the comparison with other medical programmes. We want to defeat cancer, not because we lack respect for cancer and want to rid the world of them, but because of what cancer does to people. The existence of doctors, hospitals, and pharmaceuticals is not an insult to the sick, just a sign of the platitude that illness impairs human flourishing. And the same goes for programmes that aim to reduce the number of children born with HIV. The harm the expressivist argument points to comes through communication. And so, if we have the right attitudes, clear communication should reduce or even eliminate the harm. (35)

One might reasonably question whether thinking “a particular disability makes someone’s life less good” is not one of the ugly attitudes — or, if not “ugly,” at least “unjustified.” But what I want to point out is that the analogy to cancer and HIV construes disability as disease — indeed, as life-threatening disease. This seems to me to be a decisive mistake. Cancer, HIV, malaria, smallpox, polio, tuberculosis, cholera, bubonic plague: these are diseases whose eradication comes as close as anything can come to being an unqualified species-wide good. It is misleading, not to say tendentious, to understand all of disability in these terms. Are we racing to “cure” autism because it is like cancer? Do we want to “defeat” Down syndrome the way we want to “defeat” cancer? Glover argues carefully against many of the ugly attitudes that would stigmatize or seek to eliminate people with disabilities; but the idea that disability is best thought of as analogous to cancer cannot be called an “attractive” attitude.

As for those thought experiments and hypothetical questions: twice in his chapter on “Parental Choice and What We Owe to Our Children,” Glover relies on the work of bioethicist Derek Parfit. The first question is framed like so:

Suppose there are two medical programmes, each aiming to reduce the incidence of a particular inborn disability. People with the condition have lives that are still well worth living. But they still see it as a disability, something they would prefer not to have had. It can be caused by either of two medical problems in the child’s mother. The first problem affects the child during pregnancy. The second problem, which always disappears in two months, affects the child if the mother has it at the time of conception. (47)

The first program, then, targets the fetus in utero: “those testing positive are treated and so their children avoid the disability.” The second tests women before they become pregnant, and those who test positive are advised not to conceive until the two-month period has passed.

To this already ludicrously implausible scenario Glover, following Parfit, adds the crucial question: “suppose there is funding for only one of the programmes and so we have to decide between them. Is their moral importance equal, or does one of them have a stronger moral claim than the other?” (48) 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,” 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.

This is not a trivial objection. A few pages later, Glover discusses yet another hypothetical, this time in the context of determining what counts as a life worth living. In the course of asking whether “prospective parents [should] be under some moral pressure, at least, to consider whether it is right to bring into the world a child whose life is, by a small margin, just worth living” (54–55), Glover argues against the “zero-line view” in favor of a “minimum level” of flourishing. First, he poses an open-ended ethical question. “Some victims of horrendous abuse as children may later still find their lives worth living and be glad to have been born. Does this mean that a couple with a persistent record of terrible child abuse should still be serious candidates for fertility treatment? Should there not be some minimum level above the zero line?” (55). This should make us squirm: who among us wants to approve that couple for fertility treatments? But wait. How do we apply that question to matters of genetics and prenatal screening?

By way of bioethicists’ thought experiments, of course:

Many think the zero-line view sets the standard far too low. Where should the minimum level be set, and on what basis? Frances Kamm has suggested the line be normality. She discusses a hypothetical case (introduced by Derek Parfit) of a woman who knows that, if she conceives now, her child will have a life worth living but will be mildly retarded. The woman also knows that, if she waits, she will be able to have a normal child. Frances Kamm accepts that, having a life worth living, the child with mild retardation will not be harmed by being created. But she thinks the woman will still have done wrong by not waiting. This is not just a comparative point, based on the fact that the alternative child would have a better chance of flourishing. She says “even if she could produce no child except a mildly retarded one, it might be better for her not to produce any” and that the woman “would do wrong to produce a defective child when she could have easily avoided it.” (55)

There are three things to be said about this passage. The first is that Kamm is saying, in so many words, that it may be better that children with mild retardation — children who enjoy their lives — not be born. The second is that the Parfit-induced hypothetical that leads her to this stunning conclusion is, once again, totally implausible. 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 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.

The third thing to be said about this discussion, then, is the thing with which I began this post: bioethics is much too important to be left to bioethicists. Now you know why I say so.

11 comments to Humans, Disabilities, and the Humanities?

  • Marc Workman

    I enjoyed this review very much. I wrote a review of the same book for a class I took with Dr. Rob Wilson at the University of Alberta. It was later published in Vol. 118, No. 1 of Ethics for anyone that is interested. I also disagreed with much of Glover’s argument.

    I want to press on your two central arguments against Glover — not because I really disagree with them — but because I can then more effectively use them in future discussions.

    I think there is a distinction between disease and disability, and I think the failure to recognize this distinction leads to bad arguments and conclusions about disability, but I’m at a loss as to how to articulate this distinction. There seem to be some clear cut cases: HIV and cancer are diseases, spinal injuries and missing limbs are disabilities (impairments in the words of some), but, in most cases, the distinction isn’t clear to me. Is spina bifida a disease or a disability? We may not want to “defeat” Down syndrome in the way we want to “defeat” cancer, but I think we do want to reduce the incidents of Down syndrome in the way we want to with spina bifida. I’m not saying it’s right to want to reduce the incidents of either, but I don’t understand how the disability-disease distinction helps here. I hope not to focus on these two particular cases; my point is that there are marginal cases, and the disability-disease distinction seems muddy, and I wonder if this makes it less useful in the majority of cases.

    Turning to your second point. I agree that thought experiments can “distort”, but by setting aside distracting elements, they can also clarify. And I’m not sure that Glover and/or Parfit’s thought experiments are as farfetched as you suggest.

    With respect to the first thought experiment you discuss, I think the point that Glover is trying to make doesn’t come across. The relevant section has the heading: “Should we exclude ‘what we owe to people’ from reproductive ethics?” The question relates to the “non-identity problem” where something might be wrong even though no one is personally harmed. Parfit appeals to the thought experiment to show that impersonal moral claims have weight. At the risk of putting forward another outlandish, implausible thought experiment, I think I can come up with an analogous example that makes Parfit’s point.

    Suppose there are two women, Anna and Beth, and they are both alcoholics. Anna finds out she is pregnant and foregoes the offered treatment to give up drinking and continues to consume large amounts of alcohol throughout her pregnancy. Beth, on the other hand, wants to become pregnant, and after consulting with her doctor, who recommends waiting until after undergoing a treatment program, she successfully attempts to become pregnant and continues drinking throughout her pregnancy. Both women end up having children with FASD.

    This thought experiment, though somewhat implausible, is not completely farfetched, and I think it maintains the thrust of Parfit’s own example. The point is that, if we assume Anna and Beth’s actions to be equally wrong, then the impersonal harm is what is at issue. This is because Beth’s child cannot complain that she was harmed since, if Beth had undergone the treatment program, she would have had a different child. And here is why this point is important:

    “If parents choose to have a child with one genetic make-up rather than another, where each kind of child would flourish, but the one chosen would have less potential for flourishing than the other, any criticism of the choice has to be based on the comparison. It cannot be based on any claim about the child not getting what he or she was owed.” (Glover, 46)

    You might deny that disability necessarily limits one’s potential for flourishing (that’s the sort of approach I take), but the thought experiment does seem to show that those who accept that disability necessarily limits one’s potential for flourishing cannot simply argue that having a disabled child was not wrong because the child was not harmed, not harmed since avoiding the disability would have meant having had a different child, and the child does in fact have a pretty good life overall. On this reading, the thought experiment may have scored the intended point, but it’s not much of a point to score.

    Lastly, concerning the second thought experiment, you write:

    “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.”

    This is true, but I wonder what the results would be of replacing the word “knows” with the phrase “has good reasons to believe”.

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

    This statement no longer seems true (return to Beth’s case above). Shifting from certainty to expectation probably weakens the original argument somewhat, but I suspect it doesn’t weaken it to the point that you would accept it. So it’s not enough to point out that no one can “know” these things.

    I hope this prompts some discussion of what are important ethical issues.


    Marc Workman

  • I’m with you, Michael: to suggest, not to mention assert outright, that disability makes someone’s life “less good” strikes me as both ugly and impossible to prove. Simply claiming that this attitude isn’t ugly, doesn’t make it true. Clearly Glover has a different view of fear, prejudice, and stigma than I do; I think the “less good” idea emerges from and encourages all three of these.

    I find arguments like the ones Glover and Kamm are making deeply troubling. Many of these arguments have their eyes on genetic conditions like Down syndrome. Although I won’t speak with authority about Glover’s book, having not read it, it’s clear to me that most conversations about prenatal testing—academic ones as well as the ones in the grocery store and on the internet—are ultimately about Down syndrome, and despite many folks’ best efforts not to be ugly, they often are.

    For example, in a conversation on the online magazine Double X in 2009, Ayelet Waldman discusses her decision to have a late-term abortion because her fetus had Down syndrome. She concludes the six-part conversation by explaining, “I absolutely believe that it’s fine to abort a mentally retarded baby. I have no doubt in my mind that I would do the same thing again. I’d go to any legal length to defend another woman’s right to do the same. But then aren’t I simply saying that people with developmental disabilities are better off dead? Or, perhaps more accurately, that we as a society are better off without them?” She follows this with, “Now I’ve got a knot in my belly. Where’s that think tank full of bioethicists when you need them?”

    Sadly, I don’t think they’d be all that helpful.

    I’d like to be provocative here and change the course of the choice/disability/disease conversation: I don’t want to reduce the incidents of Down syndrome. I find it to be quite wonderful, in an “openness to the unbidden” sort of way—because isn’t part of openness to the unbidden discovering unexpected, embraceable human diversity? When a friend or colleague has a child with Down syndrome, I don’t contemplate the child’s contrast with human flourishing, and reassure myself that this child’s “less good” life doesn’t reduce the child’s value or worthiness of respect. Instead, I’m delighted! Look at you! How fabulous! Another person in the world with Down syndrome!

    This is in large part because my daughter has Down syndrome, so I’m able to recognize the flawed foundations of many people’s fear, prejudice, and stigma. I’m sorry that my daughter may face challenges from the sometimes shitty world we live in, but I don’t see Down syndrome as in any way a tragedy, a lessening of her life’s goodness, or a deviation from the norm that should have been prevented. I’m eager to live in a world full of people who help us challenge and unsettle the norm in any number of ways.

  • It’s not so much that bioethics is too important to be left to bioethicists, but that it is too important to be left to philosophically-trained bioethicists.

    They love those thought experiments for a reason: the field aspires to the abstraction of science. Like any classic experimental model, their thought experiments work for them because they cut all the dense fibers linking the mother, the fetus, the potential baby, to the community, thought community, and society surrounding them. They satisfy philosophically-trained bioethicists the way the classic scientific experiment satisfies the old-model experimental scientist: highly controlled environment, pre-screened witnesses (no troublesome outsiders to the scientific high priesthood, like women or tradesmen or children), and well-controlled network for disseminating experimental results. Think: bird in the bell jar.

    Several alternative perspectives on bioethics come to my mind, perspectives that bioethics is adapting now, as it veers away (faster than we might realize) from the bioethicists bred in philosophy departments. First, there’s the feminist commitment to situated knowledges (thank you Donna Haraway) — based in the realization that the experimenters (WE) are implicated, indeed imbedded, in any production of knowledge: as observers, as those who ask the question, and as those who assess the truth value of the answer (as well as the epistemological context within which acceptable questions and answers are defined). Then, there’s Tod Chambers’ call for a bioethics that uses literature (and the affect it so powerfully musters) as a tool for thinking. This kind of fabulous work is going on already, in the Atrium cohort at Northwestern Medical Humanities. And finally, there’s Elizabeth Wilson’s most recent book, Affect and Artificial Intelligence, which gives us a moving history of affect-laden experiments even in relation to computers and the development of AI: Surely bioethics is ready to move on, to grant the same depth, ambiguity and affective power to questions that pertain to us as humans. Gotta go now, to watch some football. But thanks, Michael, for a very thought provoking posting.

  • Benjamin Hippen

    It is well and fine to criticize Glover, Parfit, and Kamm for arguments rendered. But, it would be a category mistake to generalize such ruminations as representative of “bioethical debates,” or to suppose that elaborate Trolley Problems and Inconvenienced Violinists are representative of a vast body of scholarship, which have emerged from an equally broad diversity of disciplines. Open the pages of any of the major professional journals in bioethics (American Journal of Bioethics, Journal of Medicine and Philosophy, Journal of Medical Ethics, Cambridge Quarterly of Healthcare Ethics) would demonstrate that reflections in the vein criticized in this post would be identifiable, but rare. The “empirical turn” in bioethics has many branches and twigs, but those bearing the best fruit take as a first premise that good ethical analysis begins with the data as it is found, not invented for the purposes of provocative discussion. The data as it is proffers probabilistic and not causal explanations, which in turn poses thorny conundrums all on its own, since most humans, even highly educated ones who might be thought to know better, are notoriously shaky when it comes to correctly comprehending probability and risk.

    The “empirical turn,” properly understood, offers several useful correctives: It ashcans extravagantly constructed thought experiments, exposing the sheer circularity of the premises smuggled in to the latest Science Frisson from Parfitia. But (properly understood) it doesn’t pretend to dissolve the fact/value distinction by confusing the employment of scientific methodology with normative authority. There is still plenty of room for honest (and dishonest) disagreement.

    That space for good faith disagreement permits me to disagree with, and provide a counterexample to Prof. Berube’s categorical dismissal of perinatal manipulations as Parfitian effluvia. One such example is the prenatal diagnosis of congenital adrenal hyperplasia (CAH, a.k.a. 21-hydroxylase deficiency), and dexamethasone therapy for same. The CAH mutation exposes female fetuses to androgens throughout gestation, resulting in genital virilization and a variety of possible subsequent phenotypes, including irregular menses, fertility problems, fusion of the urogenital sinus (which often requires non-gender-reassigning surgery), as well as behavioral differences down the road, which you might be able to guess at.

    Dexamethasone is a steroid which, when taken during pregnancy, substantially attenuates the fetus’s exposure to androgens and the concomitant altered phenotypes described above.

    I stipulate that the question of whether or not ambiguous genitalia, or intersex conditions generically constitutes a “disability” may be a stretch, when compared to how the term “disability” is usually employed. But, for the purposes of thinking about CAH as a clinical entity which has an ameliorating therapy, and the ends of said therapy can be plausibly defended by reasonable people, it is an actual clinical scenario which does not require flights of imagination. Not far fetched, but no less difficult a set a problems to ponder for being plausible.

    That said, Berube’s impatience with Glover, Parfit, Kamm et ilk is widely shared by those of us who write and think about topics in bioethics. I would further venture that it is a category mistake to suppose that these scholars (Glover possibly, but only partially, excepted) are generally representative of the bioethics species. Rather, these scholars are philosophers who have turned their attentions (and their imaginations) to problems which interest them conceptually. But, whatever other value their reflections may have, these scholars do not often discipline their reflections with a mastery of the available evidence, and it is not, in the main, the stuff that bioethical debates are made of. I’d submit that one doesn’t have to look far for articles in the bioethics literature which is both competent in recapitulating the relevant empirical knowledge and is sufficiently sensitive to the phenomenological implausibilities of arguments by analogy to satiate Prof. Berube’s wholly defensible impatience with his current interlocutors.

  • The fundamental flaw in the work of the bioethicists whom Bérubé criticizes is that they fail to recognize the humanity in disability.

    Disability is a fundamental human characteristic. To appreciate disability is to embrace our humanity, in both senses of the word: our human condition and our highest ideals of moral obligation. To fear disability is to fear our humanity. And that fear of who we are—of our potential—underlies the drive to eliminate fetuses with detectable possible disabilities. We tend to think of “human potential” in terms of those characteristics that we perceive as desirable: better-than-average academic performance, better-than-average physical skills. But (by definition!) relatively few of us achieve better-than-average performance in anything. On the other hand, the likelihood for all of us is that sometime during our lives, later or sooner, we will achieve our potential to experience a disability. We ought to be prepared, by ensuring justice for people with disabilities and benefitting from their expertise.

    Bérubé makes the point, always worth reiterating, about how we can never know what our children’s lives will be like. To be prepared for parenthood is to be prepared to parent a child with a disability, period. Those who advocate prenatal testing and pregnancy termination on the utilitarian basis of maximizing welfare believe they can calculate something that is incalculable: the child with a prenatally detectable disability is just as likely to have a happy and flourishing life as a child who appears prenatally to be “normal,” and the apparently normal child who is produced “instead” is just as likely to end up having a miserable life for any number of reasons. As Adrienne Asch has observed (Parens and Asch, 2000, Prenatal Testing and Disability Rights, p. 235), to terminate a fetus on the basis of having detected a disability is to put far too much weight on only one aspect of who that fetus will become. It is the ultimate act of stereotyping.

    The bioethics discussions that Bérubé criticizes ultimately fail to fully acknowledge how much the quality of life of people “with disabilities” is determined by how society treats them. Yes, life with those characteristics that we term disabilities is often (not always) more challenging in some ways than life without. And because taking folic acid and avoiding alcoholic beverages during pregnancy increases the chance that our children face fewer obstacles, pregnant women should be encouraged to engage in these relatively easy-to-accomplish, benign behaviors. But that is a far cry from making freedom from prenatally detectable disabilities a condition for one’s existence. The vast majority of challenge in anyone’s life comes from the environment in which he or she lives. “Disabilities” are significantly more or less disabling depending on how people with those characteristics are treated and how the environment in which they live is constructed.

    We owe it to ourselves, as a human community, to make our societies enabling for everyone. Then we will no longer fear disability—we will no longer fear our humanity.

  • Licia Carlson

    I want to thank Michael Bérubé for his provocative analysis. Echoing previous comments, I also think it’s important to acknowledge that bioethicists do not speak in a single voice (nor are they all able-bodied), and the positions he critiques are not representative of all philosophers. That said, his post is an important reminder of just how high the stakes are in bioethics—for philosophers and non-philosophers, disabled and non-disabled persons alike.

    Bérubé challenges the construction of far-fetched thought experiments and hypothetical scenarios in bioethics, arguing that they do not correspond to the “world we inhabit.” While I share his concern (and have made similar arguments elsewhere), I am equally troubled, not by the distance, but by the proximity that these bioethicists’ arguments have to many problematic assumptions in the real world about what it means to live a life with a disability. Pointing out the methodological limitations of thought experiments alone does not go far enough to hold philosophers accountable for the knowledge claims and normative judgments they put forth about disability. (And Bérubé clearly does not limit himself to this task.)

    This leads to one of the points I found most interesting in Bérubé’s post. He asks how Glover can acknowledge the gains that people with disabilities have made and the ways that their voices have transformed bioethical debates, yet “wind up back in the pre-transformation position of arguing that disabilities are to be contrasted with human flourishing.” Bérubé’s answer comes in the form of two critiques- a methodological point about the use of abstract thought experiments, and an argument against conflating disease and disability. Yet this tension between recognizing the perspectives of people with disabilities and perpetuating a view of disability as antithetical to flourishing also raises questions about epistemic authority.

    Thus, it is worth asking: How are first-person accounts of flourishing by people with disabilities handled in philosophical discussions? What role do they play, and how do bioethicists use them in constructing their arguments? For example, in some cases, claims about a “good disabled life” are viewed as anomalous: the response is, “yes, in some cases things turn out well, but this is in spite of the person’s disability and certainly cannot be expected or considered the norm.” Other philosophers have also challenged the veracity of such claims about flourishing. This can take a number of forms: second-guessing people with disabilities who claim that they have a high quality of life (e.g. the person is just in denial); questioning the very meaning of flourishing when used in this context (e.g. the person’s standards have changed because of her disability, therefore what she thinks is a “good life” is really an impoverished vision of flourishing); or chalking it up to a kind of compensatory mechanism (whereby the person feels happy subjectively but is really objectively worse off).

    Many, myself included, have lamented the exclusion of voices of people with disabilities from philosophical and bioethical discussions. Yet Bérubé’s reflections highlight the importance of critically examining the dynamics of inclusion as well. It is crucial to consider how and why certain perspectives are represented, challenged or dismissed in bioethics, and what kind of conceptual work they do (or fail to do) in philosophical arguments.

  • Perhaps it might be said that no one but the bioethicists thinks that bioethics ought to be left to them?

    Had there been a way of knowing that my teenage son would be autistic prior to his birth—and of what his autism diagnosis would entail (a great deal of difficulty, to understate the matter)—I would still have chosen to have him. I say this not in order to present myself in any ‘loftier-from-an-ethical/bioethical perspective’ than anyone, and not to make any dogmatic point. I still remember the moment when my OB-GYN told me about testing for Down Syndrome and told me the likelihood I might/might not have a child with a disability (I was in my late twenties at the time and there had been no complications in my pregnancy, up to that point). All the years of my liberal-humanistic education flashed before me and, too, the Take Back the Night marches, the discussions with students at the Women’s Center about reproductive choice, my anger at those who called my friends ‘baby killers’ when they held up pro-choice signs at rallies. I had felt Charlie (as my husband and I had already named him) kicking and wriggling and that feeling, that experience, made me know, ‘whatever’ Charlie might have, he was coming into this world and we would love him.

    Again, it was the experience of sensing Charlie that solidified my view.

    It’s not much of an argument about ‘the limits of bioethics in regard to prenatal testing for disabilities’ I’m writing here. Simply stated, ‘thought experiments’ have limited value when it comes to making real-life decisions about what to do after you’ve gotten the results of prenatal testing; about what to do if a child is born with a disability and, following Glover’s wording, is less likely to ‘flourish.’ I could have read a thousand books (by parents of autistic children and individuals on the spectrum themselves), and even more journal articles, but I still would not have had any real idea of what our life with Charlie would be like. I have learned a great deal from such books and journal articles, from conversations with parents of children with disabilities, with autistic self-advocates. But, in raising a child whose needs are very different from those of many, abstractions and hypothetical musings, while interesting, fall short in addressing the nitty-gritty of life.

    In formulating any sorts of policies or regulations regarding something like prenatal testing for disabilities, we ought perhaps to think of bioethics as one tool, and one not any more likely to lead us towards answers than any others. To respect human life in all of its diversity, and difference, and disability, we need always to consider not the individual we describe ‘by way of example,’ but the actual, supremely unique person who stands before us.

  • Eva Kittay

    Michael Berubé begins his fine commentary on Glover’s book with a word of appreciation. Glover is a bioethicist who actually has read up on the lives of people with disability. But though Glover acknowledges that a life with a disability might still be worthwhile, he maintains that it will be deficient as a fully flourishing life. Glover’s is one of the more thoughtful works on the subject. He even seriously questions the hubris that pervades many of the discussions and the choices people make. So it is a pity that Glover winds up with his position.

    Berubé explains the oddity of holding these both two positions by noting first that Glover “conflates disability and disease at a key moment in the argument,” and second that Glover relies on “hypothetical questions that make no sense except in the “what if” world of bioethicists.”

    I agree. Mostly.

    I think Berubé’s analysis leans too heavily on the distinction between illness and disability. I think much of the work of explaining the oddity of Glover’s position can be attributed to a failure on Glover’s part to acknowledge that all lives generally are comprised of disadvantages along with possibilities for flourishing. Setting out choices, generally hypothetical ones, in which disability figures as the disadvantage that diminishes flourishing reinstates the very prejudice that apparently Glover wants to avoid. Furthermore, Glover, in maintaining that disability, diminishes human capacities for flourishing and does not take seriously enough the observation that the very atypicality that can disable also allows for heightened capacities for flourishing.

    Berubé is right to point out that Glover conflates disease and disability strategically. Yet is the distinction so sharp that Glover’s move is entirely unwarranted? No doubt there is a distinction. My daughter, for example, is severely disabled, but she is also robustly healthy. She is nonetheless more vulnerable to disease as she is unable to speak and alert us if she has pain or discomfort. While her disability isn’t a disease, it makes her more likely to get very sick when she gets sick, despite her otherwise robust state. A deaf person may be ill, but deafness is not an illness. Still deafness may sometimes be caused by an illness such as diabetes or by a syndrome that causes both disability and disease, such as Alport’s syndrome, which causes kidney disease and can cause deafness.

    Some chronic diseases however are more like disability than acute illness. The ADA definition of disability demands accommodation for the disabling effect of illness, especially chronic illness such as diabetes or AIDS. Although AIDS is a disease—no disability is contagious—it can be disabling as much as other disabilities. And how should we classify Chronic Fatigue Syndrome? It is medically approached as a disease, but it has no cure and can disable in ways other disabilities do. Deafness in contrast has something like a cure when cochlear implants work well.

    The original motive for maintaining a sharp contrast has been to promote the “social model” over the medical model. The classic position is that diseases are appropriately handled with the medical model, while disability is a human variant that requires not medical intervention but social accommodation. Although we can say that intersex is a genital variation, when it is a consequence of CAH, it must be treated as a medical matter since it is also potentially fatal. These conceptual and practical complications have persuaded many disability scholars to articulate either a biosocial model or a more complex social model.

    There is enough murkiness and indeterminacy in this area that gliding from disability to disease is not necessarily a foul move in this argument. Acute disease is a serious impediment to flourishing, especially if it threatens life or is the source of much pain and discomfort. Chronic illness like disability may impede flourishing — or not. My chronic sinusitis is a pain, both literally and figuratively, but it has little to do with my ability to flourish. If one is making the argument, as Glover is, that we should be choosing a child who has the possibility of flourishing and whenever possible we should choose the child that has the better chance at flourishing, then to elide the already muddy distinction between disease and disability is perhaps too convenient, but not entirely unwarranted.

    Still I believe that there is another problem with the argument that does not rely on the disease/disability distinction. We have to start by acknowledging that most disability is not merely a human variant (though some may well be), but it is also a disadvantage. That disadvantage may have its origin in the impairment itself. (My severely intellectually disabled daughter is surely disadvantaged when it comes to surviving on her own because of her intellectual limitations.) Or that disadvantage may be entirely or mostly the consequence of social attitudes, manmade structures, and failures to accommodate the disability.

    But just as important is the fact that disadvantage is a possibility, if not a likelihood, in any life. Some forms are systematic, like racism or sexism. Others have to do with bad choices or bad luck, with failed ambitions or failed love, with an accident suffered as one goes about one’s usual business or finds oneself engaged in war. Disadvantage can result from the loss of a loved one–through death or through a failed relationship. It can be a consequence of acting heroically or behaving recklessly. Disadvantage can face us if we suffer mental illness, physical illness, or drug addiction. Disability has no monopoly on disadvantage.

    At times, the limitation of a disability is of little consequence to one’s chosen mode of flourishing. But for people with disability, the impairment or atypicality can be at once the source of new ways of flourishing. (As Glover himself notes, there are different forms of flourishing.) Living with an atypicality or an impairment can be ruinous until and unless one finds possibilities opened by the limitation itself to make one’s life joyful and meaningful. If we have a supportive community or social situation these possibilities can emerge and be actualized. Many blind people, including those Glover speaks of, have shown us ways this is the case. Even a seemingly devastating cognitive impairment such as my daughter’s, may allow for an intensity in enjoyment that most of us miss. My daughter listens to her favorite music as it comes out of a radio, CD player or video machine with the attention I only apply when I am in the concert hall. Her appreciation is such that at times she can hardly contain her joy. As I understand a flourishing life, she has at least one element of it in spades. The caveat is that without the appropriate social environment, that capacity might not be recognized or encouraged. She needs me to turn the music on for her.

    Note that I am not saying that disadvantage itself is the source of new ways of flourishing—this is an unnecessary glorification of suffering to which I do not want to lend my voice. But the atypical body and mind give rise to ways of experiencing the world in ways that typicals might fail to understand or perceive. Yet despite this, and because the disadvantage of a disability is not always merely socially constructed, it is unacceptable to deliberately disable an individual. Parents who are dwarfs or deaf who intentionally choose babies with these conditions may be a different case—first because they do not deprive anyone of capacities they already have and second because the centrality of the parent-child relationship and the richness of the communities established by small people and the deaf provide additional opportunities for flourishing. Still we think, rightly I believe, that a blast that deafens someone harms that person—which is not to say that she cannot lead a flourishing life as a deaf person.

    Furthermore, although disability can present new possibilities for flourishing, there is no guarantee that these will be actualized by a given individual. For example, a soldier who becomes disabled by losing a leg, and who has been a successful athlete, might see her opportunities as a star athlete pass her by. Or she might take the missing limbs as providing an opportunity to develop herself in sports that maximize upper body strength. She might go further and invent a new and better wheelchair or prosthetic and thus become a successful—let us imagine a hugely successful—entrepreneur. But to say that war is therefore a good, and getting one’s limbs blown off is a benefit defies good sense and good moral judgment—even though this individual was able to grab hold of new opportunities that his injury and disability provided, and have an even better life as a consequence.

    In saying this, do I therefore concede Glover’s point? Recall the “what if” example of the mother who can avoid having a child with a mild intellectual disability if she waits two weeks. Does the position I have laid out force the conclusion that the mother is morally culpable if she does not wait? No, it doesn’t. To understand why, we have to see how philosophical thought experiments can mislead.

    “’What if?’ questions” are constructed to ignore real life situations. The reasons are twofold. First the messy nature of real-life questions does not allow us to isolate what might be the critical moral question or philosophical concept. The thought experiment creates an idealization meant to identify the “essential” elements of the matter. Secondly, by parsing these elements and placing them in an unfamiliar context, we can formulate discrete questions to test our intuitions. In these contexts we are stripped of prejudices that might otherwise cloud our judgment. That, at least, is the motivation. Donald Davidson, the premiere analytic philosopher of our time and himself the author of a very famous thought experiment (the Swamp Man who is created out of the chemical reactions of the swamp and emerges a fully formed adult) much later in his life said at a talk that he thought that we should abandon the use of such hypotheticals. His reply astounded his audience. He explained that we couldn’t explore our intuitions based on them because we really don’t know what they mean. What can we learn from a “what if” swamp man when no natural creature ever emerges fully formed? Berubé puts the point in terms of the trolley car and says: but there is no such trolley! Because no such trolley exists, we do not really understand how we would react in the posited situation. We weave spider webs to follow through the threads of our arguments. But these are too delicate for the hard realities we face. The examples are bereft of the contingencies that give rise to innumerable forms of disadvantage, isolating only one, that of disability.

    The result is a scenario that contrasts two fetuses. One has a disadvantage that we know about, namely the impairment/atypicality. The other is presumably without disadvantage. Yet we have no knowledge of disadvantages that this fetus, if brought to term, would encounter in its life. And given the complexity and vulnerability of life, some encounter with disadvantage is likely. In our thought experiments we are presumably weighing a life with a known disadvantage against a life without disadvantage when we should be weighing a life with a known disadvantage against another with some likely but unknown disadvantage. While the very unreality of the thought experiment is supposed to sharpen our intuitions, the information that would be necessary to weigh the desirability of the two possible lives is lost and the thought experiment instead only reinforces preexisting prejudices. Here truth and clarity come apart.

    Given an idealized comparison between a future child about whom we know that she will have a disability (with its concomitant disadvantages), and one about whom we cannot predict what disadvantages are in her future, the nondisabled child will win out every time. And this will be true whether or not we conflate disability and disease or not.

    The passage from Glover that Berubé cites illustrates the problem. Glover writes:
    “I think that, other things being equal, it is good if the incidence of disabilities is reduced by parental choices to opt for potentially more flourishing children.”

    But as we know, in life, other things are never equal. So why isolate disability? The prejudices (the ugly attitudes) are restated rather than derived from a valid comparison of the chances two possible future children will have for flourishing.

    When we figure disability as disadvantage, and the lack of disability as the lack of disadvantage, then the only conclusion is that we must choose against disability. If we see that the limitations or atypicalities that disable can produce other modes of flourishing, we will exercise choice with the humility that is the only appropriate attitude in the face of life’s many contingencies.

  • Tom Shakespeare

    Thanks to Eva Kittay for this wise and balanced post. I particularly appreciated her less dismissive account of thought experiments. But she doesn’t quite persuade me to back Berube over Glover.

    I think parents would generally do whatever they can to promote the welfare of their child. I do not think they necessarily focus on the risk of impairment above all things. But before and after birth, they seek to minimise whatever harms they can. Disability is only one among the many predicaments, those ‘thousand natural shocks that flesh is heir to”, but it is one that, to some extent, we can now avoid: and so many choose to try to minimise the chance of it happening, whether by avoiding alcohol in pregnancy, taking folate supplements, or opting for antenatal screening, or buying a car seat. True, many non-disabled people are miserable, and some are truly evil. But I do not think that the fact that disability avoidance does not guarantee a good life, means that it is any less sensible to try and reduce the risk of disability.

    To me, disability is not neutral, it is a decrement in health. Not a tragedy, granted, but not just another difference like sex or ethnicity. Disability may sometimes open one up to other possibilities (as might poverty, HIV and divorce) but that does not make it less of a predicament. Of course, environments contribute mightily to the burden, and it is a matter of justice for us to try and lessen those physical and attitudinal barriers. People are indeed disabled by society – but by their bodies too. (I also find the distinction between illness and impairment ultimately unhelpful). Those of us born with our disabilities are used to our form of life, and we rarely bother worrying about it – we cannot imagine any other way of being. But ask any disabled person how they would feel about losing further abilities, and most would be less sanguine, I think. (I was broadly happy to spend forty plus years with restricted growth. But I regret deeply spending the last couple of years as a paraplegic, despite the fact that I am probably as happy today as I have ever been).

    I would like to deconstitute the disability category a little. I think there is a danger in equating disability, as some utilitarian bioethicists do, with all the worst and most difficult forms of life – Tay Sachs or Lesch Nyhan or other profound limitations in which the possibility of flourishing seem truly remote. But I also think there is a danger, as some disability advocates do, of equating disability with the other end of the scale – with Deafness, or dwarfism, or Down syndrome, conditions which hardly diminish flourishing at all.

    Where I part company with Jonathan Glover is his perfectionism – his hope that we can not only put disability behind us, but that we can, and should, improve on average human nature and human embodiment. My messy, possibly incoherent, position is that we should accept a measure of diversity and difference, because human frailty is unavoidable, but that where the balance tips into suffering and restriction, we should do whatever we can to avoid it. While still valuing, supporting and including all those individuals who end up, despite our efforts, with profound disability.

  • Thanks to everyone for these wonderful responses to my post. They’ve helped me think things through a little more clearly, I hope, and they’ve corrected me on one very important point. That point has to do with my misunderstanding of Parfit’s thought experiment about postponement of pregnancy over against treatment in utero. I now understand (as I did not before) that the choice of one program or the other isn’t really a Trolley Problem; it’s a way of getting us to ask which conditions we might seek to ameliorate, which we would prefer to avoid (or eradicate), and which we think are within an acceptable range of human variation. And thanks to Marc Workman (whose review of Glover’s book I thoroughly enjoyed, not least because of its questioning of how Glover uses the standard of “normality” with only the barest of acknowledgments of how problematic this is), I now understand Glover’s deployment of the non-identity problem a bit better. I still worry that the postponement/treatment option is asking me to weigh the claims of a disabled child over against those of an entity that was never conceived (because the mother waited and had a different child), and I don’t know how to do this. But in another exchange with a bioethicist (who, like many of the respondents here, reminds me that bioethicists do not all walk in single file, and do not all board trolleys at the same time), I was asked about the difference between postponing a pregnancy so that the child is not born near Christmas, and aborting a pregnancy so that the child is not born near Christmas. This I understand.

    And I understand Benjamin Hippen’s important point about dexamethasone therapy for CAH, about which, I admit I did not know. I will merely point out that the dexamethasone treatment has no counterpart in pre-conception counseling, so the analogy with Parfit’s thought experiment breaks down there.

    But I think the empirical turn in bioethics, of which Hippen speaks, helps me answer Workman’s question:

    “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.”

    This is true, but I wonder what the results would be of replacing the word “knows” with the phrase “has good reasons to believe”.

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

    I think the results of that reformulation are significant. I would even go a bit further, and add “the most one can say is that a woman in such a position might have a reasonable expectation to hope she will have a normal child if she foregoes pregnancy now.” Because as Susan Squier suggests, the more we emphasize contingency, the more likely it is that our thought experiments will have some bearing on the way things are.

    Skipping down the thread, I’m not sure how I gave Tom Shakespeare the impression that I would oppose any and all efforts to promote the welfare of a child, or to minimize harm before or after birth. To pick up a line from Anna Stubblefield, folic acid is fine by me. Likewise with avoiding alcoholic beverages (and tobacco!) while pregnant. What’s not fine by me is the blanket statement that disability is a “decrement in health.” Some disabilities are, some aren’t; or they overlap with illness and chronic conditions in complex ways. (Jamie is the only one in my family who does not have asthma. My own allergic reaction to horses can be so severe as to be life-threatening, I am sorry to say.) I know Shakespeare knows this, because later in his comment he quite wonderfully assigns Down syndrome to the category of “conditions which hardly diminish flourishing at all.” This of course puts him in another universe from that of Ayelet Waldman, who, as Alison Piepmeier points out, clearly considers Down syndrome so profoundly debilitating as to justify late-term abortion. But in response to both Tom Shakespeare and Eva Kittay, I want to insist that even though I distinguish between disease and disability, I do not mean to draw a bright clear line between them. I don’t think there is such a clear line. As I said in this related thread, “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, as I noted in that comment, trying to think productively about the possible relation(s) between disease and disability makes my head hurt. I first tried to get at it in this essay, where I wrote about my student who refused the analogy between disability and AIDS on the grounds that he would never have any misgivings about the “discourse of the cure” with regard to the latter. “Even in the work of disability activists who would never give a moment’s thought to providing all deaf people with cochlear implants,” I responded, “there is a common sense that there are some human conditions we are better off without.” My point here, in this blog post, is that I simply don’t think that Glover’s analogy between disability and cancer is any better — and I think it puts Glover’s thumb squarely on the scales when it comes time to measure which lives are more flourishing than others.

    So yes, there are conditions in which disability can entail a less flourishing, or (not the same thing) a less happy life. Perhaps someday I’ll write up a companion piece to this one, in which I remark that some people in disability studies tend to underplay this fact, albeit for fairly obvious and understandable reasons. But this time around, I’m more concerned with people who (subtly or unsubtly, consciously or unconsciously) see all forms of disability as impediments to human flourishing. As Eva Kittay, Anna Stubblefield, Licia Carlson, Kristina Chew and Alison Peipmeier remind me (in variously challenging ways), so much depends on — and so much will depend on — the extent to which bioethics foregrounds the actual experiences, the actual sense impressions, the actual narratives, and the actual lives of people with disabilities.

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