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On doing philosophy of disability when you have a disability

Brian Leiter

MOVING TO FRONT FROM YESTERDAY, AN INTERESTING DISCUSSION IN THE COMMENTS; MORE CONTRIBUTIOSN WELCOME

Stefan Sciaraffa (McMaster) calls my attention to a striking item by philosopher Elizabeth Barnes (Virginia); an excerpt:

I have sat in philosophy seminars where it was asserted that I should be left to die on a desert island if the choice was between saving me and saving an arbitrary non-disabled person. I have been told it would be wrong for me to have my biological children because of my disability. I have been told that, while it isn’t bad for me to exist, it would’ve been better if my mother could’ve had a non-disabled child instead. I’ve even been told that it would’ve been better, had she known, for my mother to have an abortion and try again in hopes of conceiving a non-disabled child. I have been told that it is obvious that my life is less valuable when compared to the lives of arbitrary non-disabled people. And these things weren’t said as the conclusions of careful, extended argument. They were casual assertions. They were the kind of thing you skip over without pause because it’s the uncontroversial part of your talk.

Now, of course, no one has said these things to me specifically. They haven’t said “Hey, Elizabeth Barnes, this is what we think about you!” But they’ve said them about disabled people in general, and I’m a disabled person. Even just thinking about statements like these, as I write this, I feel so much – sadness, rage, and more than a little shame. It’s an odd thing, a hard thing, to try to take these emotions and turn them into interesting philosophy and careful arguments. My first reaction isn’t to sit down and come up with carefully crafted counterexamples for why the views I find so disgusting are false. My first reaction is to want to punch the people that say these things in the face. (Or maybe shut myself in my room and cry. Or maybe both. It depends on the day.) It’s a strange thing – an almost unnatural thing – to construct careful, analytically rigorous arguments for the value of your own life, or for the bare intelligibility of the claims made by an entire civil rights movement….

Sally Haslanger once told me to trust my anger. That was some of the best advice anyone’s ever given me. I’m trying to learn how to take my anger and use it as motivation to keep writing, especially on those days when the thought of using philosophical arguments to push back against the status quo feels somewhere between overwhelming and pointless. And while feeling this way can be exhausting – in a way that writing about, say, metaphysical indeterminacy never was – it can also make the end result deeply special and meaningful in a way I wouldn’t have anticipated.

Thoughts from readers on the issues raised by Prof. Barnes?

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24 responses to “On doing philosophy of disability when you have a disability”

  1. grad student

    There are large swathes of practical philosophy that I avoid for similar reasons. There are tons of issues that many philosophers who have lived very sheltered, very comfy lives think they can just pontificate on and on about, even though they haven't really talked with people who have experience with or suffer from such issues, or done any research into empirical work on the matters, or really made any effort to become informed, or even consider that people in the room they're pontificating in might have something more than an abstract relationship with the relevant matter.

    I'm a woman, but this is one of the reasons why I have zero interest in or patience with feminist philosophy. Some of it's really really good, but a lot of it is obnoxious and offensive for the same reasons I listed above: people pontificating about things they haven't researched and clearly don't understand, but have shaped my life in profound and disturbing ways.

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  2. Tom

    I enjoy Barnes' work and understand the core worry about how causal philosophers can be about matters of life, death, and identity. But I really don’t think we should express desires for violence. I have seen this post praised by some, but praising that part seems to me highly unfortunate.

    As for the worry about coming into existence, this is tricky. But if someone has cancer, should he or she feel awful if someone else claims, in as respectful tone as possible, that we should select people in the future, when we can, without genetic predispositions to cancer? I don’t think so. Perhaps there are reasons we should avoid selection, but I don’t think this discussion should make people with cancer feel awful (or even if feeling awful can make sense in some cases, at least not feeling wronged by the discussion).

    Now maybe disability is entirely different. There is an interesting debate about this which Barnes is at the center of. But since the vast majority of philosophers and non-philosophers still (I suspect) think that conditions like deafness or blindness are misfortunes that rival cancer in their badness. So the interesting question it seems to me is how to have the discussion in a responsible way. Could Barnes perhaps say more about how to communicate negative-difference-maker model in ways that are more productive and less painful to hear about? Perhaps she can name articles that do this effectively? Or is that merely holding/expressing a belief in the negative-difference view sparks rage? I think it would be important and helpful to get this part as clear as possible.

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  3. marktheknife

    @Tom: I don't see anything wrong with Barnes expressing her violent feelings. That's a valid human emotion, in response to a situation that I think justifies that kind of emotion. And I think the need philosophers put on others to separate their emotions from their work isn't always a great thing. Barnes' post in fact makes many points on similar topics at length.

    I think what Barnes really is calling for is straightforward, and doesn't require her to name a model article. She believes we should begin our philosophical arguments from a blank slate, instead of the status quo. At the point of the blank slate, we'd presume that all individuals are equally legitimate and worthy of respect and resources, because we haven't yet made the grounds on which people are assigned legitimacy, respect, and resources. We can then argue away from this point, but the key is that we in fact must argue; it seems to be the bare assertions or unsupported arguments that especially get to Barnes. This would also make it such that the onus isn't solely on her to establish the worth of disabled people, in contrast to the current situation.

    Barnes is correct here. The health of philosophy suffers when we don't thoroughly examine our arguments and assertions; starting from such a blank slate would help prevent this. And while we should feel comfortable to be offensive and unafraid of censorship in philosophy, for the pursuit of knowledge is well worth the cost of hurt feelings, when we make offensive arguments that also happen to be bad or unsupported arguments, we undercut support for this core idea. Lastly, I think it makes philosophical sense to begin from such a starting place. After all, as noted, when we begin our philosophical inquiries, we really have no reason to rank people anyway; that must be argued for.

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  4. AHN

    While it may be true in some superficial sense, I don't think it's fair to say that Prof Barnes was expressing a desire for violence period. She's clearly talking about her "first" reaction (which, admittedly, is a desire for violence), and there's nothing to indicate that she ethically endorses this reaction (particularly considering that she goes through the trouble of pointing out that it is merely her "first," not necessarily her last). Considering that she hasn't, as far as I know, acted on this first reaction, the natural conclusion would be that she in fact does not endorse this reaction. I think she is just trying to truthfully depict what her first reaction is, to let the reader in on what it feels like, not to encourage the reader to feel the same. I'd hope more philosophers/thinkers were as willing and able to express their (likely regrettable) first reactions to ethical issues that actually affect them–and that expression/depiction should not be discouraged or considered unworthy of praise.

    In fact, this is a bit indicative of how you may have misinterpreted her intentions. Her point is less that these positions are wrong or unworthy of endorsement merely because they make her feel bad–it is that the often flippant and casual way they are offered up, without any thought to the lived experiences of individuals actually affected by these issues. She specifically says, "…these things weren’t said as the conclusions of careful, extended argument. They were casual assertions." And that of course is not to say that all philosophers of disability (other than presumably Prof Barnes) are guilty of this. Also note that it's not just an issue of "tone"–it's an issue of disregarding lived experiences (which admittedly is hardly a novel criticism of ethical philosophers, though I think that a reminder is often needed and that Prof Barnes' post moreover adds more substance to the discussion).

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  5. Jean

    Ethical arguments can cause offense in lots of contexts. In an abortion debate, one side will offend people who have had abortions–it hurts to be called a murderer! In a debate about eating meat, one side will offend carnivores and animal farmers–no doubt it hurts being called indifferent to the suffering of animals. Same with the debate about disability and well being. It can hurt to be told your disability makes you worse off. (But I wonder if it hurts everyone. Is Barnes's reaction typical?) It might also hurt, but in another way, to be told you're guilty of irrational prejudice for trying to avoid having a child with a disability. I don't think there's a position you can take on disabilities that won't be painful and offensive to anyone.

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  6. Grad Student2

    It is always important to thoroughly examine our arguments and assertions. However, I think that Barnes' thoughtful comment drives home something we should keep in mind. Some people have to do the work of being a philosopher every day while also feeling like their value as a person is under attack, not just their ideas. That is a much harder road to travel. That is not only a reason to be careful in the way we phrase our arguments- to use examples when they are necessary and important, not cavalierly or because we find the scenario we describe funny- but also a reason to realize that many people face a more difficult challenge in just getting up the mental energy to do philosophy, for reasons that have nothing to do with their ability to think or their underlying capacity to do excellent work. We should be attentive when we are potentially creating environments that add to this burden.

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  7. Joshua Reagan

    @marktheknife:

    Your "blank slate" doesn't look so blank if it presumes "that all individuals are equally legitimate and worthy of respect and resources". Maybe this is a good assumption, but it's still an assumption. If "bare assertions or unsupported arguments" are so bad then it seems to me you can't start with an unsupported presumption of egalitarianism.

    I take no stand on the larger issues mentioned by Prof. Barnes.

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  8. Yet Another Anon Grad Student

    I suspect the sentiment Barnes rails against stems from a particularly base form of hedonism. These same people would likely say that Steven Hawking would be better off with an average intellect without a disability, presumably because this would increase the number of hedons produced by his life. Since this sort of hedonistic calculus is taken by these people to be a brute and unargued theoretical starting-point nothing more can or need be said against it. One may simply reject it with laughter.

    Though there is no doubt going to be a line somewhere. I know someone who had a child who was deaf, blind, paraplegic and had a severe mental disability such that she could do little more than moan and drool on herself (I'm not being hyperbolic). I don't think there is any reasonable way to say that this person had a life worth living. Indeed, I regard it an unimaginable cruelty that she was forced to continue to exist in what must have been a sort of living hell. I wouldn't wish that on my worst enemy.

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  9. Tom

    @ marktheknife: We clearly disagree about the ethics of expressing violent feelings, though that aside, I suspect we agree on the value of emotions more generally.

    To clarify, I wasn’t suggesting that offering model articles or examples of effective debates in this context was ‘required’ for anything, only that it would be helpful to know what causes members of our profession serious pain and what doesn’t. If someone says ‘basically everything that defends the negative-difference view does and would continue to do so no matter how it was done’ then some might not wish to engage these issues at all.

    I take it that you (and perhaps Barnes, but I was wondering about that and so was seeking clarification) are vouching for a different view, namely one where people do a better job of arguing for controversial claims, taking less for granted, and just being all around more sensible. If so, we have no disagreement. But some I have come across seem to argue for the other view. I have seen Jeff McMahan questioned here in ways that struck me as unfair; it was though his very position – which I didn’t think was answered philosophically–doesn’t deserve a platform. Now maybe certain views cause so much pain, regardless of whether they are true, that they aren't worth expressing. But if that's the question/issue, opposed to the truth question about the value of disability, one would wish to know.

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  10. Tom

    p.s. the comments section in the original post helped to answer my question. It seems that Barnes is open to debate on these matters, which makes sense given the spirit of her articles more generally. She says,

    "If someone has a very thoughtful, careful argument the conclusion of which is that, e.g., you really should leave the disabled person to die on a desert island if you have a choice to save some arbitrary non-disabled person instead, then I’m more than willing to listen, and I want to find out why they think this."

    Not that I remotely endorse the view in question about letting members of certain groups die on Islands (that sounds awful) but it answers my question that she is open to debate about the negative-difference maker view more generally.

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  11. AN

    Deafness and blindness are as bad as having a potentially fatal condition? That is just bananas.

    Disabilities very widely, and I'll admit that some of them impose grave burdens, such that we might imagine ourselves unable to cope with those conditions ourselves (although we might find, in the event, that we're able to cope with even those).

    But most disabilities impose conditions that can be lived with and worked around just like any other kind of human variation. There are millions of people living with disabilities all the time, and dealing with the hassles and the needed adjustments are just part of routine living. Most of us will "grow into" some form or other of disability as we age (if we're lucky enough to age!)… so this idea that people with disabilities are some kind of unknowable other suffering a vast misfortune is a huge failure of imagination. All kinds of circumstances and personal characteristics shape our opportunities/obstacles; are those all subject to this kind of "is it worse than cancer" weighing?

    Disabilities are (generalizing here!) a pain in the ass, but I'm pretty sure dying is worse.

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  12. Tom

    To AN: I agree, on reflection, and recant that unhelpful and potentially hurtful comparison to cancer. But please don't ascribe to me the view that disabilities in general are huge misfortunes. I never said anything of the sort about all disabilities and even in my (unhelpful) comparison to two particular disabilities, I never said or implied that these 'worse than cancer' or preferable to death. In any event, the larger point was one you yourself seem to agree with at certain points, namely, that the disabilities like the one's I mentioned are notable misfortunes.

    You deny that disabilities in general are vast misfortunes and acknowledge that many do adapt. That is fine. But it seems to be a difference-maker view nonetheless. And perhaps that very view could seem harmful to hold. So I am still wondering how many people with the relevant disabilities in question or otherwise find this view psychologically harmful.

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  13. marktheknife

    @Joshua Reagan:

    Your point (that egalitarianism needs to be established too) is well-taken. I guess what I meant more is — at a blank slate, there isn't even an idea of legitimacy or value. In that sense, everyone is equal at that time by default, as no distinctions have been made. That's what I am trying to get at. Then when you go onto establish these ideas of moral legitimacy and value and other distinctions, you have to argue why they make sense to apportion the way you do. Does that make more sense? I think it also comports with what Barnes is saying as well, though her actual philosophical commitments may best be put as "Please argue for and support your points."

    @Tom:

    I appreciate your clarifications for me of where you were coming from. Your concerns make sense, though I think we're agreed that Barnes and myself manage to evade them.

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  14. lecturer

    It's worth pointing out that Savulescu (presumably one of Barnes's main targets) does give a clear and straightforward argument for selecting against disabled (and less intelligent, good looking, etc.) embryos: on the three major extant theories of well-being (hedonism, desire satisfaction, and objective list), the odds are that a disabled (less intelligent, less good looking, etc.) embryo will not go on to lead as good a life as a non-disabled one. And parents have a duty to have the child who will be most well off of all the children they could have had. Does some part of this argument cross the line into unacceptable discourse?

    Maybe his argument that many disabled people are more likely to be worse off according to the three major theories. Now I don't see the claim in and of itself as unacceptable. But at least in what I've read, Savulescu doesn't give empirical evidence that, e.g. seeing impaired people experience less pleasure. Maybe one form Barnes's objection could take is to point out this lack of evidence.

    But suppose the relevant studies were done, this lacuna were filled and it turned out that people with traits X, Y, and Z, where some of these are disabilities, were less well off according to the main theories of well-being. If it seems like I'm being too cavalier here, consider a hedonist evaluating the life of someone with a biological disposition towards depression. Surely, *from the hedonistic point of view*, an embryo with this disposition is, all things being equal, less likely to go on to lead a good life than an embryo without it.

    The discussion is uncomfortable, but which part of it is out of bounds? Hedonism? The suggestion that depressed people experience less pleasure than others? The Principle of Procreative Beneficence? Bennett (http://philpapers.org/rec/BENTFO-3) gives an argument that procreative beneficence disvalues disabled people lives in an unacceptable way, but I don't find her argument persuasive.

    Furthermore, this uncomfortable discussion is kind of unavoidable, since people are actually using IVF and selecting in some of the ways Savulescu recommends. We need to have an honest discussion of this practice.

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  15. Tim O'Keefe

    lecturer, I don't think that Elizabeth Barnes is saying that we cannot have a discussion of these issues. (She's written a book on the topic!) And if you look at the comments on her post, she makes it clear that she isn't ruling certain statements _per se_ as straying into unacceptable discourse. She says,

    "I think one of the most important issues, in discussing or teaching these topics, is just to treat them with the care and respect they deserve. What bothers me most about the way disability is often handled isn’t so much that these things are in fact said, but rather that they’re casually assumed without much thought, support, or argument. They’re taken for granted. And that, more than anything, is what’s so infuriating."

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  16. A Philosopher?

    It seems like we're missing Barnes' point.

    Her point, it seems to me, is that typical discussions of disability focus on how disadvantaged an individual can be due to disability. But we should really be focusing on the social structure that puts a disabled individual at a disadvantage to begin with.

    For instance, we might say that it would be better to be born to rich parents in The Hamptons than from a single mother in inner city Detroit. This makes it sound like the life of the child born in Detroit is valued less than the child born in The Hamptons. When, really, the problem is not being born in Detroit but rather that where one is born can make such a difference. The problem is the social structure that allows the disadvantage, not one's geographical birthplace and genealogy.

    Same, then, with disability.

    BL COMMENT: In this regard, some may find this article by a former colleague of mine on the social model of disability interesting: https://www.law.uchicago.edu/files/files/pl166.pdf

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  17. lecturer

    Tim O'Keefe,
    The comment you cite (May 16, 4:01pm) helps. So I agree with Barnes's normative claim that we should give reasons for value comparisons rather than just assuming them.

    As for her descriptive claim that bioethicists "tend" to just assume their value comparisons without argument: in a way, I disagree–I've tried to explain how Savulescu does argue for his view. I think Singer and McMahan do too. I can't remember a published author who really just made the assumption she describes.

    On the other hand, I've indicated a kind of assumption that is sometimes made, and that it closely linked to the value comparisons. This is the empirical assumption that people with certain disabilities tend to experience less pleasure, have fewer desires satisfied, etc. To be fair, Savulescu says a bit to justify the assumption. But he doesn't cite rigorous empirical studies. So if the assumptions Barnes opposes are these empirical assumptions, then I agree.

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  18. anon

    @ lecturer in comment 17.

    In the quoted passage, Barnes is describing personal experiences in philosophical conversations e.g. in seminars. Seminars are typically attended by people with a wide variety of specialty and experience. In the quoted passage, Barnes doesn't claim that philosophers in the debates "just assume" these views "without argument."

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  19. Jean

    I imagine she's talking about seminars in which the main topic of discussion is something other than disabilities and well being. For example, a puzzle is presented about whether possible baby A should be preferred to baby B, even though they are different babies, on grounds that B would have a certain disability. The "meat" of the discussion is the babies being different, and how there can be an obligation to create the "better" one. The background assumption is that baby A is "better." Thus, it becomes sort of a casual, shared assumption that disabilities make life worse.

    I can see how this sort of discussion could have the wrong tone. We ought to be sensitive to the fact that people in a seminar room may have disabilities, or could have had them, or have relatives with disabilities. We shouldn't talk like disabilities belong to "them" over there, and not to us. That said, I don't think there's anything improper about assuming (in certain contexts where something else is the main issue) that disabilities make life worse, so long as that "them, not us" tone is avoided and so long as at some point, somewhere, that's carefully argued for.

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  20. lecturer

    anon, I'm not sure the first sentence of the quoted passage is supposed to restrict the scope of the rest of it in the way you suggest. Also, the discussion in the comments certainly aren't restricted to comments in seminars. But I can see the force of your interpretation on this point. And finally, I don't think she means to restrict her claims to personal experiences in the way you suggest. Anyway, if Barnes means what you say she means, then fair enough. The tendency she describes is a bad one.

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  21. Lewis

    Benjamin Kunkel's Utopia or Bust is an elegant introduction to the historical and philosophical literature.

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  22. WT

    "I’ve even been told that it would’ve been better, had she known, for my mother to have an abortion and try again in hopes of conceiving a non-disabled child."

    This seems like quite a cruel and insensitive thing to say to someone as a direct personal remark. But apparently it wasn't a direct personal remark after all, for Barnes goes on to say, "Now, of course, no one has said these things to me specifically.. . . But they’ve said them about disabled people in general, and I’m a disabled person."

    So . . . a diagnosed disability (such as Down's Syndrome) is quite a common reason for potential parents to choose abortion on the ground that it would be better to avoid lifelong suffering and impairment that would otherwise occur.

    Are such decisions so verboten that even an abstract discussion is beyond the pale? If so, that puts a different tenor on the pro-choice/pro-life debate than most of us might prefer.

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  23. Yet Another Anon Grad Student

    As I pointed out over in the original thread, I find Prof. Barnes' demand for arguments a bit odd. Certainly some claims made by these people need evidence. For instance, the counterfactual claim that a deaf person would experience more suffering than her non-deaf counterpart is not at all obvious. The claim that she would have to overcome more obstacles than her counterpart is fairly safe, but this doesn't translate into more suffering or less pleasure. Really, this latter claim ultimately rests upon the claim that deaf people in general are less happy than non-deaf people, and this is an empirical psychological and sociological claim. Moreover, I suspect it is a dubious one. From my (admittedly limited) familiarity with the psych and cog-sci literature, it is my understanding that people's overall happiness has more to do with their emotional dispositions (which seem to be primarily determined by physiology and early-development) than with their circumstances. It may be (barring extreme differences in their circumstances, of course) that a deaf person and her closest non-deaf biological counterpart would be equally happy. The claims are even stranger from a preference-satisfaction conception of well-being. Apparently more than a few deaf people prefer to be deaf for cultural reasons. Given that, it would be hard to predict whether a deaf child would actually have many of her preferences defeated. The problem with all of these claims about well-being is that they depend upon a ceteris paribus clause that seems dubious when one takes into account the fact that many of these disabilities often play a formative role in regard to the subject's wants and preferences. Alternatively, one could take a teleological approach to the concept of well-being and argue that deafness is always a detriment to one's well-being simply in virtue of the fact that it deviates from proper-functioning. But of course virtually no contemporary ethicists accept such an account of well-being.

    That brings me to my main point. Perhaps Barnes accepts either a hedonistic or preference-based conception of well-being and simply finds the factual assumptions dubious. However, from what she says in the original post it appears that she is more generally opposed to these conceptions of well-being because they deliver what she takes to be the wrong results. In this case, Barnes is demanding that moral realists provide evidence for their conceptions of well-being. This is what I find odd. These conceptions of well-being are usually taken as foundational starting-points for consequentialist theories, and are typically based on equally foundational intuitions. What argument can a hedonist provide for her claim that well-being is determined by the quality of one's mental states? If you are a heavyweight moral realist then you think that you have a rational faculty of intuition that gives you special access to moral truths. It is thus hardly surprising that the people she has dealt with have dismissed her as being too emotionally invested in the topic. From their perspective such emotions are likely to interfere with one's cognitive access to the Good. Perhaps her goals would be better suited by undertaking an anti-realist critique of the intuitions in question. Or, like I said, she could simply focus on the factual side of the well-being claims.

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  24. Michael B

    2 350-odd years ago, Aristotle wrote a book about the good life in which he listed and discussed the virtues necessary to flourish, and suggested ways to cultivate them in ourselves and others. For those who could not achieve full eudaimonia, there was at least, practical wisdom to aim for – how to bring people up.

    Fast forward a few millenia and, rather than engage in practical debate and lobbying for better social structures or medical treatments – even assuming everybody disabled wishes to be 'saved' – now we are discussing who [always other than we] should be aborted* or left to die on an island, because they might not achieve the presumed full eudaimonia of the university-educated, able-bodied, philosophy practitioner.

    Next time some physicist tells me that philosophy makes no progress, I know how to respond.

    *A thing which no adult male will ever have to go through, but, yeah, continue to talk about what duties women have to their bodies.

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