Ethics Discussion at PEA Soup: Elizabeth Barnes’ “Valuing Disability, Causing Disability,” with Critical Précis by Tom Dougherty

23 Replies to “Ethics Discussion at PEA Soup: Elizabeth Barnes’ “Valuing Disability, Causing Disability,” with Critical Précis by Tom Dougherty”

1. I want to apologize in advance the length and turgid style of my comments. This is my first time on PEA Soup, or any blog, and I haven’t acquired the right level of informality. I hope my style will become more conversational as the exchange progresses. In any case, I’m delighted to make my debut commenting on such an excellent article. So here goes:
   In his concise and duly appreciative précis, Tom Dougherty sees the most pressing issue left by Barnes’s analysis as the breadth of the non-difference view; whether it covers all or merely some disabilities, a question that, in turn, may depend on how disabilities are defined. I think he’s right. Barnes declines to attempt a definition, identifying disabilities, for current purposes, by ostention. I don’t think she can avoid the definitional challenge for those purposes, because the plausibility of her analysis depends at some points on the scope of disability. Claims that seem plausible for blindness seem less so for Duchenne Muscular Dystrophy (DMD), two conditions that Barnes points to as disabilities. The problem is that the latter, as a “progressive” condition, has inherent transition costs – its natural course includes an increasing loss of function: muscle deterioration leading to early death. Many other conditions classified as disabilities have this general feature – they arise from a disease process that causes further loss of function, as well as, in some cases, frequent pain, discomfort, and disruption.
   This feature creates a problem for Barnes’ assumption, made in her Disability Baby case, it is possible “to cause someone to become disabled without any associated transition costs.” That assumption is highly plausible with respect to blindness. It is less plausible with respect to DMD. I don’t think it is unreasonable to speculate – and that’s all I am doing– that many people with DMD experience their muscle deterioration as a “deeply painful process.” Of course, knowing that have DMD, they can plan their lives in light of its expected course. I have no doubt that many, like Laura Hershey, live rich, rewarding lives in which the continuing loss of function is not experienced as traumatic. But such adaptation seems qualitatively different from that of a newly blind person. Once he loses sight, Ben, suddenly blinded in adulthood, resumes stable functioning without sight. He can modify, acquire, or refine skills, interests, and projects, making his life as fulfilling as any sighted person’s. It may be that an individual with DMD can also “adapt perfectly well” to her condition, but that would involve a somewhat different process, coping with ongoing loss, adjusting to frequent physical disruption, and so on. An infant or fetus, let alone an adult, caused to have DMD is caused to have a condition that by its very nature imposes significant transition costs – they cannot be stipulated away.
   To make this point clearer, imagine decomposing DMD into several distinct disabilities, each causing only the decline in function that is typical for a three-year period of DMD. Introducing more of these successive disabilities would eventually (when the child was old enough to experience and appreciate the further loss of function) raise the same kind of objection as blinding Ben, even if the effects were less sudden and disruptive. (We could also imagine that the individual on whom the successive disabilities were imposed had much the same uncertainty about when and how quickly they would be imposed as individuals with DMD typically have about the course of their condition.) If causing these successive disabilities were objectionable for the transition costs each imposed, why wouldn’t causing DMD in an infant be similarly objectionable – for its continuing or recurring transition costs?
   Perhaps Barnes would argue – based on her definition of disability in the first chapter of her forthcoming book (which I look forward to reading) – that the social construction or group solidarity involved in definition it also distinguished actual DMD from my fanciful case. Someone undergoing successive losses of function caused by a third-party might lack the basis for a social identity or group solidarity. But that is not clear to me. As the survivor of a kind of sustained abuse, she could find or create a social group with similar experiences, as long as she understood her experience in a sufficiently broad way.
   My case is fanciful, but the flip side is less so – the increasing mitigation of the harmful symptoms of DMD by research making slow and halting progress toward full treatment. As Dougherty notes, Barnes recognizes that there may be no objection to research that increases the life expectancy of people with DMD. But that life extension presumably results from slowing or even arresting muscle deterioration. Doubtless many people with DMD would welcome the alleviation of related symptoms as well, such as fatigue and breathing difficulties. They would not regard research to develop such partial treatments as “distracting and unhelpful” if it set realistic goals and was not pursued at the expense of social and environmental changes to decrease their exclusion and stigmatization. But if they endorsed such partial efforts, why would they balk at the development of a complete cure if it became available?
   Certainly, a cure would be a mixed blessing – those who had DMD might lose their fraternity; some might experience survivor’s guilt with respect to those who had died before a “cure” was available; some might be overwhelmed by the myriad of options afforded by a much-extended life. But none of these strike me as compelling or even good reasons to reject a cure. The value of the social bonds, shared experiences, and narrative coherence such a group offers does not require a positive or neutral attitude toward the condition around which the group formed, any more than it would for a group of Gulag survivors. Of course, the conditions that forged that group are evils that cannot be undone, not harms that can be mitigated or eliminated, as in the case of DMD. But I fail to see how people with DMD have reasons that Gulag survivors lack to assign positive or neutral value the condition that brought them together.
   I suspect that Barnes would respond that I’ve overlooked better, stronger reasons. But my point is mainly a comparative one. It seems perfectly reasonable for a flourishing blind person to have no interest in research to partially confer or restore sight, and to be at most curious about the prospect of full vision. If their lives were going sufficiently well in a reasonably inclusive environment, they might even view the prospect of sight with the dread I feel toward the prospect of a “sixth sense” like clairvoyance or telekinesis. Again, my point is that this attitude towards a “cure” seems more appropriate for someone with four or five senses than for someone with DMD.
   As I see it, Barnes has two options: she can explicitly affirm that there is no reason to regard life with DMD as worse than life without it, or to regard it as more objectionable to cause DMD in an infant than to cause non-DMD in an infant. I have worked for two decades to confront my biases about life with disabilities, but I simply cannot accept these claims, or see an argument that might persuade me to. It is quite possible, even likely, that some or many people with DMD have better lives than mine, on any plausible theory of well-being. But it is reasonable to assume what we cannot ascertain: that the life prospects of an infant with DMD are worse than those of an infant without it, on any plausible theory of well-being. The second option would be one I doubt Barnes would find appealing: to distinguish stable disabilities like blindness from diseases like DMD, and to limit her neutrality claims to the former. Drawing a line would be both difficult and exclusionary, treating some disabilities as “more neutral” than others. (I also share Barnes’ skepticism about the “risk of discrimination” option, since blind people may face almost as great a risk of underestimation, condescension and pity as people with DMD). I would welcome a way to recognize both the prospects for flourishing with almost any disability and the legitimacy of developing treatments to eliminate the disease processes causing the functional loss, pain, and disruption that seem integral to many disabilities.

2. Barnes is surely right to argue that the “mere-difference” view of disability cannot successfully be undermined by pointing out that if it were correct, it would be permissible for me to painlessly cut out your tongue to make you mute and impermissible for me to use as-yet-undiscovered techniques to regrow your amputated limb.
   While I share David Wasserman’s concern about the sort of definition Barnes is talking about, I think she is not to be faulted for refusing to give a concise and complete definition of disability, since what counts as one is in some respects context dependent. The paradigm examples she gives serve perfectly well for letting us know the sort of thing she is talking about. What worries me slightly, though, is her refusal to acknowledge that some forms of disability are unpleasant—or worse—in and of themselves, quite apart from the damage caused by ableist social barriers to full functioning. I have in mind not only terribly serious disabilities such as epidermolysis bullosa, which can produce large, painful, fluid-filled blisters and continual scarring that fuses the fingers and toes; but lesser ills, such as the annoying sound of dried peas being shaken on a tin tray that Jackie Leach Scully says accompanies her hearing impairment. (Those of you who have not yet read Scully’s _Disability Bioethics_ are in for a treat.)
   Barnes might reply that yes, these cases of disability are bad in themselves. Not all disabilities are alike, and not all disabled people are or should be content with their condition. Nevertheless, cases of that kind don’t detract from her argument, namely, that there is no direct route from the mere-difference view to objectionable (im)permissibilities. Nor do they detract from the greater point, which is that by and large, disabilities are simply a variation on the standard body type. All types have their limitations and all have their compensations. This point, which has been made repeatedly by many in the disability movement, is worth taking far more seriously than philosophers of the Jeff McMahan variety have done.
   As Barnes says, it’s complicated. The proponent of the mere-difference view can resist the idea that Parfit’s case of Child Now involves any wrongdoing, as it isn’t wrong to cause a disabled rather than a nondisabled person to exist. Yet at the same time, she can think that further disabling a severely cognitively impaired child via growth attenuation is wrong. It’s just that the wrong-making reasons are other than that disability per se is bad. By the same token, the person holding the mere-difference view might well wish there were a cure for chronic fatigue syndrome and nevertheless think that the focus on a cure diverts resources away from assistive technology or desperately needed in-home care. And she won’t want to be complicit in the ableist assumptions that underlie such a focus.
   So, on the whole I think this is very well argued and quite seriously helpful. But if Barnes could say something about epidermylosis bulosa . . .

3. Thanks so much, Tom, David, and Hilde for the incredibly interesting and insightful comments. There’s lots I want to say, but unfortunately I’m going to have to say it in a somewhat scattershot way, just because I’m limited for time. (As you might have guessed, it’s kind of a busy time here at UVA. . .)
   I want to start with David and Tom’s question about the scope of what I’m calling the ‘mere-difference’ view. In defending the claim that disabilities are, in general, mere-difference, I’m saying something that’s compatible with some individual disabilities (actually, presently) being bad-difference. Part of the reason I think it makes sense to talk about disability in general (rather than specific disabilities) is just that this is the way the debate has been framed. People have said that the impermissibility of causing disability (in general) precludes holding a mere-difference view of disability (in general) – and that’s the claim I want to contest, so I follow that usage. But I also think that people who defend bad-difference views of disability often think that disabilities which are bad-difference are somehow bad-difference *qua disability* or *in virtue of the fact that they are disabilities*. And that’s a claim I’d want to contest. I think that it might be plausible to say that DMD, for example, is bad-difference, but bad-difference in virtue of its correlated shortened lifespan, not bad-difference just in virtue of being a disability. If you could eliminate the shortened lifespan, you could eliminate the bad-difference (without thereby eliminating the disability).
   This ties back to the discussion of ‘cures’. Again, in an ideal world I don’t think there’s anything at all wrong with creating the means to remove disabilities. But in our very non-ideal world, the focus on ‘cures’ (to use the pejorative term) can be really problematic. And one area where this is evidenced is the way in which people find it difficult to understand disabled people’s desires for treatments and medical interventions as anything other than desires for ‘cures’. Mary Wollenstonecraft’s ‘A Vindication of the Rights of Woman’ can be read as her defense of a mere-difference view of both the female sex and the gender woman. But I imagine Wollenstonecraft would’ve welcomed the relief that medical science has brought, over the subsequent centuries, to the harsh realities of living in a female body. However, just because she would welcome a reduction in high morality rate in childbirth, or treatments for common problems like endometriosis and fibroids, or the control over a menstrual cycle that birth control offers doesn’t mean she wanted a ‘cure’ for the female body. She might welcome the fact that it’s now much more pleasant to live in a female body that it used to be without endorsing the idea that female bodies need to be ‘cured’ or made more like male bodies.
   And just as there were physical aspects of being female that were pretty awful in the 1790s (and, let’s all be honest, some physical aspects of being female that are pretty awful now), there are also – of course! – some aspects of living with some disabilities that are pretty awful. I don’t think any of the mere-difference rhetoric that you see in the disability rights/pride movement tries to deny that. Sometimes, living in a disabled body just sucks (and sometimes that’s for reasons independent of how you’re treated). But disabled people can want ways to have those awful aspects of their disability alleviated without wanting to be turned into non-disabled people, just as females can’t want the awful bits of being female alleviated without wanting to be turned into males.
   All that being said, I do think we should be really careful making judgements about what kind of disabilities we might in fact think are (actual, present) bad-difference (even if we don’t think disability in general is bad-difference). I think our intuitions about this are likely to be pretty unreliable. Most fully sighted people, for example, assume that since sight loss comes in degrees, the less sight you have the worse off you are. In fact, this doesn’t seem to be the case at all – the people who report the most dissatisfaction with their vision are people who have a moderate amount of sight loss. I think there’s a tendency to think that the disabilities we think of as the most ‘severe’ will be the ones that we should judge as bad-difference. But some of the most vocal proponents of disability pride represent these ‘severe’ types of disabilities, and I think that should give us pause. Yes, the more ‘extreme’ or ‘severe’ a disability is, the more bad consequences it might have – but, on the flipside, the more potential to transformatively shape a person’s sense of self-identity it might have. So I’m somewhat suspicious – especially given the testimony of prominent disability activists like Barbara Hershey, Ben Mattlin, and Harriet McBryde Johnson (all of whom have/had what we might call ‘severe’ disabilities) – that we’re in a good position to ever say, of an individual disability, that *that particular disability* is bad-difference, even if we think we’re warranted in believing that some disabilities are bad-difference.

4. Sorry. This post was to follow David’s.
   Somehow it didn’t load.
   Elizabeth Barnes article is a welcome repris from the usual dismal and dismissive ways in which philosophers characteristically deal with disabled people who testify to the goodness of their lives. Even when these philosophers want to take seriously the claims by disabled people that their lives are good, there is a lingering ceteris paribus clause: All things being equal it is better not to have the disability than to have the disability. This presumption, that disability is a bad difference, is largely bolstered by what is assumed to be the natural intuition: it is not morally permissible to cause a disability, and it is morally permissible, perhaps morally imperative to prevent a disability. If disability were a mere difference then it would be morally permissible to cause a disability and morally impermissible to prevent a disability. At first, this line of argument looks like a convincing reason to think that there is a disanalogy between disability and other neutral (or mere) differences such as race, gender and sexuality. The beauty of Barnes’s work is that it not only faces this objection to the view that disability is a mere difference view, but does so in a brilliantly convincing manner.
   There are three arrows in Barnes quiver that she puts to excellent use: that unjustified interference is a moral wrong, the acknowledgement of the costs and risks of transitions from ability to disability, and the skillful deployment of the analogy between disability and the presumably more neutral differences of race, sex and sexuality to undermine intuitions that ability is preferable to disability.
   It is hard to control the impulse not to rehearse all of Barnes’s arguments and luxuriate in their brilliance. But I will concentrate on just a few points where I feel I may be able to add some insights.
   Barnes has little to say about the experience of parents of disabled children, and for several reasons the omission is warranted. First Barnes is defending a position for which disabled people themselves are the best spokespersons. Secondly, parents who are themselves not disabled often hold on to at least remnants of what disability scholar Tobin Siebers calls “the horizon of ability.” Thus they aren’t always natural allies for Barnes’ position. And yet many of the philosophical arguments that Barnes counters invoke parents as actors, either as the irresponsible mother who blithely refuses to postpone her vacation with the consequence that she gets pregnant when her chances of giving birth to a cognitively disabled child are the highest, or as the pleasure seeking mother who takes an aphrodisiac that increases her chances of giving birth to a disabled (often mentally disabled) child, or, yet again as the responsible mother who takes every precaution to help ensure a well and nondisabled child. So it seems right to interject oneself as a parent, at least in these cases.
   Furthermore, even nondisabled parents of a disabled child have the experience of living with disability, and see the disability of a loved one with somewhat different eyes than the disabled person sees. Additionally, what often goes implied in the arguments about causing disability or giving birth to a disabled child is that cognitive disability is especially bad. Therefore the implication is that however much we might grant the idea that other disabilities are mere differences, surely we cannot grant the same for cognitive disabilities. What’s more, many of the more severely disabled children with cognitive impairments are unable to speak for themselves. Parents have a crucial role here. I will want to address the what for me personally is, an especially delicious section of the Barnes’ article, the one that addresses such arguments philosophical thought experiments about bringing a disabled child into the world when an able child might have been born in its stead. These arguments all depend on the ceteris paribus clause I mentioned at the outset. But given David’s posting, I will leave these thoughts aside and move to those that at least orthogonally intersect with his and Tom’s question about different kinds of disability.
   To address the question Tom poses, whether all disabilities are only socially constructed, an argument that Barnes appears to endorse in the article, I would answer that not all disabilities are mere social constructions or mere difference, but this is not to say the disabilities that are not “mere difference” are therefore simply “bad difference.” They are, following Tobin Siebers who says disability is a “complex embodiment”, a complex difference.
   There are different aspects of this complexity. Early mortality, debilitating pain, having always to be at the mercy of another for one’s essential needs, having an increased vulnerability to disease and abuse are aspects of certain disabilities that most disabled people do not desire. But even these uniformly disliked conditions can be turned into occasions for enriched lives. Early mortality may make life more intense; pain can teach us compassion for another’s suffering; extreme dependency may teach trust to one who never learned to trust before. Vulnerability for abuse is a tough one, but here a social cause is clearly present. We should be working to make a world that is safer for everyone. This is not to say that we ought to pain, early mortality, extreme dependency because they can offer occasions for enrichment, but it is to say about at least some of the difference of at least some disabilities: Its complicated. The negative features of disability count among the difficult things life presents for everyone, disabled or not. The able are no more immune from misery, and often are less adapt at turning it into something that enriches us, even as it robs us of other goods.
   Complexity from a parent’s perspective is somewhat different. Parents of disabled children, just as parents of able ones (who, as all of us, are all vulnerable to disability) are concerned about our children’s safety (preservative love, in Sara Ruddick’s felicitous phrase), and we are acutely aware of how much more vulnerable our disabled children are. Many typical human capacities work effectively to protect ourselves against dangers, and when we lose some of these we lose some self-protective tools. In the case of certain disabilities, there are compensatory ways we can learn to protect ourselves, but in the case of others all that is available is a reliance on caring and careful others who will be alert to dangers and abuse and be able to use the laws of the land to protect their vulnerable charges.
   Here the analogy with the difference of race, gender and sex is once again instructive. Those on one side of the difference are more vulnerable than those on the other: in a white dominant society, blacks are more vulnerable, women have greater vulnerability especially to sexual exploitation, and in parts of this country as well as in many parts of the world a LGBT person is still in mortal danger. Again, in itself this doesn’t have to make a difference a bad difference, but it does mean that we cannot stop at the equivalence. We really do need to attend to the difference.
   Another point about the analogy warrants a remark. Being LGBT today, being one race or another, and being one gender or another comes with an identity and a community. In the case of some disabilities this is also true. But other disabilities have to blend into the general population or remain for the most part, excluded. “Normals” have the many communities of “normals”. When inclusion fails, lack of access and social prejudice are doubtless factors. But social constructions are not always the end of the story. My disabled daughter’s many impairments have made inclusion into the wider community a near impossibility. We did locate a community for her and she has thrived there—but in the absence of community, disability can be a lonely space to occupy.
   Finally, as a mother of a child with the sort of disability that is feared beyond all others, I can nonetheless say, without any doubt, that my daughter has a great quality of life. It is not the life philosophers generally think of as a great life—a life of intellectual achievement—but it is one that has joy, love and an immersion in the experience of being alive. I can also attest that many times I cannot believe how lucky I am to experience a person as wonderful and magical as my daughter. My parental road may have been more difficult than many, but I don’t need a gold star for the extra effort. My daughter is my gold star. It was Spinoza who told us that everything worthwhile is as difficult as it is rare. My daughter’s rare and beautiful difference, and the difference she has made in the lives of her parents and others is a rich and complex difference… more than a mere difference.

5. Hi Elizabeth,
   As I’ve mentioned to you, I think your article is outstanding. Just a few questions/comments.
   I’m still not perfectly clear on the views you’re discussing. My hunch is that the essential claim of bad-difference views is this: screening off the prudential effects of living in an ableist society, having a disability tends to be, on balance, bad for a person (where this takes into account intrinsic and extrinsic prudential badness). There is an opposing good-difference view (replace “bad” with “good”). Then, the mere-difference view is the negation of each of those views. Are these fair characterizations?
   Another question I have concerns the fact that you only screen off the prudential effects of living in an ableist society. What if a society doesn’t qualify as ableist but nonetheless lacks the resources or technology to provide effective accommodations for certain disabilities? (And, of course, things may not be so simple. In a given society, there may be some costs that spring from ableism, some genuine limitations on accommodations,…) I’m tempted to think that you should screen off these other environmental costs/benefits as well. Or is there some reason to only exclude prudential effects that result from ableist attitudes, structures, etc.?

6. I want to applaud Elizabeth’s response that we ought not delineate in advance what disabilities are bad. Cognitive disability is usually put in that pile of disabilities. Indeed McMahan argued somewhere that in light of the social model of disability, severe cognitive impairment should not even be called a disability. This is a very harmful move since it suggests that since nothing that society can do will bring the severely cognitively disabled individual up to an acceptable level of functioning, such individuals are not owed goods and services that social justice requires we provide to the disabled. While severely cognitively impaired people may not be able to be “independent and productive” no matter what social accommodations are made, they benefit enormously from a social model of disability. Through services, forms of accessibility, greater inclusion, we have seen the blossoming of many who lived in the shadows. The tent of disability has to be a large one or if the more privileged disabled people are not to perpetuate the same sorts of oppression as they themselves experienced. And this is what I thing Elizabeth is warning us against.

7. “The tent of disability has to be a large one or if the more privileged disabled people are not to perpetuate the same sorts of oppression as they themselves experienced.”
   Very well said, Eva! I think so many of our judgments about what kind of disabilities are bad reflect complicated intuitions – and often incorrect assumptions – about the lives of disabled people, coupled together with questionable assumptions about what people *should* or *ought* to be able to do in ideal circumstances. If we create a hierarchy between the ‘good’ disabilities and the ‘bad’ ones, it may start to look, structurally, a lot like the hierarchy we currently have between the disabled and the non-disabled.
   One thing I should’ve said more succinctly above is just this: you can think a particularly disability is itself mere-difference without thinking that everything associated or correlated with that disability is mere-difference. Wollenstonecraft thought being female was mere-difference, but I doubt she thought high mortality rate in child birth or lack of control over reproductive cycles was mere-difference. Similarly, we can think that a disability itself is mere-difference while still thinking that some aspects of that disability are themselves bad, or stuff we’d want to get rid of. I think people find this tricky because they tend to think of being disabled as just a cluster of ‘symptoms’ (in a way we obviously don’t for things like sex or gender) – so to value being disabled just is to value those symptoms. But I think that’s an implicitly medicalized view of disability, and that (implicitly or otherwise) medicalized views of disability don’t really capture what it is to be disabled.
   Right – I should stop typing and get some sleep. Hilde, Eva, and Steve, I’ll reply to your comments in the morning. Again, thanks so much for the incredibly helpful, insightful, and thoughtful comments. This is fun!

8. This is a very interesting challenge to the bad-difference view, which I confess to holding unreflectively (as I suppose most non-disabled people do). In the spirit of Sobelian half-assedness, I’d like to make a few probably naive suggestions.
   First, I think that the bad-difference view should be formulated in pro tanto terms – if disability as such is bad, it’s pro tanto bad. If this is the case, the formulations of the bad-difference view that refer to net loss in well-being don’t capture the target. Take the following (ii):
   “Were society fully accepting of disabled people, it would still be the case that for any given disabled person x and arbitrary nondisabled person y, such that x and y are in relevantly similar personal and socioeconomic circumstances, it is likely that y has a higher level of well-being than x.”
   I think the bad-difference view would be better formulated in something like the following terms:
   (ii*) Were society fully accepting of disabled people, it would still be the case that for any given disabled person x and arbitrary nondisabled person y, such that x and y are in relevantly similar personal and socioeconomic circumstances, there is a burden on x’s well-being that y doesn’t have.
   If true, this would suffice to distinguish between the disabled and the gay, for example. ii* doesn’t claim that the badness of disability couldn’t be compensated for (for all it says, a disability could be a net benefit in some situations), only that there is something to compensate. This should be easier to argue for than the all-things-considered badness view.
   I find the arguments in the paper against the inference from the impermissibility of causing disability to the badness of disability convincing. Still, I find the mere-difference view troubling because of its seeming consequences for other people’s duties. Clearly, other people shouldn’t discriminate against gay or disabled people. But beyond that, it would be absurd to maintain that other people should be taxed to provide support or compensation for gay people, or that there should be insurance against being gay paid from public funds. If being disabled is a mere difference like being gay, the same follows. Yet it seems to me that Eva is right above in saying that social justice requires we provide services and goods to the disabled. How can this be reconciled with a mere-difference view? Is there any argument for it that doesn’t presuppose some version of the bad-difference view? (I wouldn’t be surprised if there’s a straightforward response – apologies for not being familiar enough with the debate.)

9. Good morning!
   I just want to thank everyone again for this discussion. And thanks especially, Eva, for you wonderful, heartfelt comment. For some reason, reading Eva Kittay’s papers always moves in a way that’s deeply personal, and in a way that other philosophy just doesn’t. As it turns out, even her blog comments can make me cry!
   Basically, I agree with everything you say, Eva. And I’m particularly grateful to you for bringing up your perspective as a parent. There’s so much about that section of the paper that’s dry and abstracted away from reality, and it’s wonderful to hear the real lived experiences of a mother.
   I want to clarify a bit about what I intend when I endorse a social constructionist account of disability. There’s a tendency, in social constructionist theories, to ignore the body. As Rosemarie Garland Thompson puts it, if you endorse a social constructionist account of disability you think that ‘disability is not a property of bodies’. And I think that shows up pretty clearly in the so-called Social Model of disability – which Tom Shakespeare has criticized so effectively for basically ignoring the disabled body entirely (and making ‘impairments’ something that we don’t talk about). This is a strand of thought that I’m much more sympathetic to in other social constructionist projects. When Sally Haslanger, for example, argues that whether you’re a woman is a function of what people assume your body is like (and the social functions they attribute to it), not anything to do with what your body is actually like, it resonates with me. But the same sort of view seems woefully inadequate for disability. There’s a wonderful passage from Eli Clare that I’ll just cut and paste here, since I won’t be able to summarize it nearly as well as he puts it:
   “‘Sometimes we who are activists and thinkers forget about our bodies, ignore our bodies, or reframe our bodies to fit our theories and political strategies. For several decades now, activists in a variety of social change movements, ranging from black civil rights to women’s liberation, from disability rights to queer liberation, have said repeatedly that the problems faced by any marginalized group of people lie, not in their bodies, but in the oppression they face. But in defining the external, collective, material nature of social injustice as separate from the body, we have sometimes ended up sidelining the profound relationships that connect our bodies with who we are and how we experience oppression.’”
   Whether or not that’s true for gender, sexuality, etc, it definitely seems true for disability. When I say that disability is socially constructed, I don’t want to deny the physical, embodied nature of disability. Rather, I want to suggest that the – physical, embodied – conditions we group together as disabilities are unified as a kind because of social, rather than natural reasons. I want to defend a social constructionist account of disability, but one that still does justice to the embodied reality of disability.

10. Hilde, thanks so much for your comments! Just to reiterate what I said in reply to David, I think it’s important to note that we can think that some *aspects* of a disability are bad or unpleasant without thinking that the disability *itself* is bad or unpleasant. Furthermore, I think you’re absolutely right when you say that “not all disabilities are alike, and not all disabled people are or should be content with their condition.” But I think this is exactly what someone who thinks that disability is, in general, mere-difference should expect.
    If I think that disability is mere-difference, I think it’s neutral with respect to wellbeing (it doesn’t by itself make your life better or worse). But it might make your life worse (or better) depending on what else it’s combined with. A lot of people experience Deafness (even acquired Deafness) as something positive. But it obviously wasn’t something positive for Beethoven. It was by all accounts the most painful experience of his life, and drove him to thoughts of suicide. Whether Deafness is harmful to a person doesn’t just depend on intrinsic features of Deafness, it also depends on what it’s combined with – personality traits, projects, interests. Something that can be positive and enriching for one person can be devastating for someone else.
    But that’s not unique to things we classify as disabilities. I have really flat feet. This makes absolutely no difference to my life (except on the rare occasions when it’s hard to find shoes). But if I’d worked and dreamed of being a ballet dancer, the shape of my feet could’ve been the thing that broke my heart and killed my dreams. This thing that is barely a blip on my radar could have, if combined with different interests and different projects, been devastating for me.
    So I guess my point is that the move from ‘disability x is bad for person y’ or ‘disability x is bad in circumstances z’ to ‘disability x is bad-difference’ is one we should avoid.

11. Elizabeth, speaking as one who has just begun to wear hearing aids in both ears, and who has worn glasses since I was about eight years old, I certainly agree that some disabilities make absolutely no difference to one’s life. We have fixes for those conditions that let us move about in our society just as well as people without those conditions.
    Something I don’t think you mentioned in your really lovely article was another point that disability activists often make, which is that all of us are certain to be disabled at some point in our lives. That makes disability a bit different from being a woman or man–very few of us will transition to another gender at some point in our lives. So, you’d think that would make us more accepting of differences in ability than difference in gender or skin color or suchlike, but I don’t really think we are. It’s terribly hard, I suppose, to see difference without turning it into deviance.
    Unlike Eva, I am not the mother of a severely cognitively impaired daughter, but I had a little sister who was so impaired she couldn’t sit, swallow, speak, or even smile. She died of hydrocephaly when she was 18 months old and I was seven, but I still miss her. I wouldn’t wish that particular disability on anyone, but that’s NOT to say her life wasn’t precious and that social resources shouldn’t have been expended on her care. It’s bad enough when philosophers argue that people like my sister have lives comparable to what they clearly think of as the “lower” animals, but it’s infinitely worse when they demote them to a standard of lesser moral considerability. That move just makes me want to set my hair on fire.

12. I have a version of Tom’s third question. I would have categorized mental health issues like clinical depression and bipolar disorder as cognitive disabilities, though unlike the ones I understand Eva to have in mind above in being compatible with independent living. I’m wondering whether you have a view about whether these are mere difference disabilities or not.

13. I would like to comment on this portion of Antti’s post:
    “Clearly, other people shouldn’t discriminate against gay or disabled people. But beyond that, it would be absurd to maintain that other people should be taxed to provide support or compensation for gay people, or that there should be insurance against being gay paid from public funds. If being disabled is a mere difference like being gay, the same follows. Yet it seems to me that Eva is right above in saying that social justice requires we provide services and goods to the disabled. How can this be reconciled with a mere-difference view?”
    I have outted myself as not taking a simple “mere difference”, nor a bad difference view, but a “complex difference” view. (And incidentally Elizabeth, Tobin Sieber’s “complex embodiment” was motivated by the sorts of criticisms that Tom Shakespeare made.) Such a complex difference view, which is how I understand the considerations that Elizabeth has raised, would seem to be response enough to Antti’s question. But I think that the gay-straight difference is, in different ways, also a complex difference and social justice, beyond the assertion and enforcement of negative rights, might have an important role to play in an ideal society as well. Consider the embodied aspect of being gay. One thing that is commonly considered a human good is the ability to procreate and to have family. Gays and lesbians who do not want to engage in heterosexual intercourse are disadvantaged with regard to this good. One could reasonably claim, I think, that either (or both) taxpayers dollars should be used to the finance technological means that allow such couples in having a genetically related (at least to one partner) child or that gays and lesbians should be given some priority in access to adoption and should be able to apply for government assistance in paying the expenses that are incurred in adoption. Similarly, while we can say that a gender difference is a mere difference it is complicated by women’s procreative capacities and by specific health needs (e.g. birth control devices and regular screening for cancers that primarily strike women). In an ideal world, one without misogyny, it is reasonable to think that these differences would receive support through taxpayers dollars. So what looks like an obvious disanalogy is less obvious than it first seems to be.

14. Quick follow-up reply to the part of Antti’s post Eva is responding to: I would have thought that there are two responses available to Elizabeth from what she has already said. First, insurance is concerned with the transition from non-disabled to disabled, not something I understood her current discussion to be intended to cover. My understanding is that her discussion is focused on the state of being disabled. Second, on the point about taxation for support, I would have thought that here she can rely on the analogy with being female she drew earlier. Being female is not worse than being male, just different. Nonetheless, there are dangers that those with female bodies are much more likely to face that those with male bodies, e.g. dying in childbirth. Those too are burdens it makes sense to tax society to help distribute the cost of.
    Does this seem right to others?

15. Hi Elizabeth, really interesting paper!
    I wonder what you think of cases that involve “interference” as a foreseen but not intended side-effect, as this seems to me to introduce a strong intuitive disanalogy between (severe) disability and other “mere differences” such as sexual orientation.
    Suppose a woman gets pregnant while taking some medication that is very helpful to her health. This particular medication, she learns, has a chance of altering a feature of her fetus. In case 1, it makes the resulting baby more likely to be gay. In case 2, it increases the chances of being born without limbs.
    My response to these cases is to think that in case 1 the woman has no reason to change her medication (it might even strike us as morally problematic for her to do so: “What is so bad about having a gay child that you would go out of your way to avoid it?”, one might be tempted to ask). Case 2 seems different. It seems positively wrong to continue to act in ways that foreseeably significantly increase the risk of birth defects, disability, etc., at least if reasonable alternatives are available.
    Simply put: Thalidomide was problematic in a way that it wouldn’t have been if all it did was make it more likely that one’s child would be gay. Mere principles of non-interference don’t seem sufficient to explain this, right?

16. Back to this part of Antti’s post:
    “Clearly, other people shouldn’t discriminate against gay or disabled people. But beyond that, it would be absurd to maintain that other people should be taxed to provide support or compensation for gay people, or that there should be insurance against being gay paid from public funds. If being disabled is a mere difference like being gay, the same follows. Yet it seems to me that Eva is right above in saying that social justice requires we provide services and goods to the disabled. How can this be reconciled with a mere-difference view?”
    Social support is often necessary not only during the transition from more able-bodied to less able-bodied, but for certain disabilities themselves, for example, people who need personal caregivers because they can’t reach particular parts of their bodies, or people who rely on interpreters in their interactions with the hearing world. But this observation does not militate against the mere-difference view. The temptation to suppose it does rests on the assumption that the world is divided up into able-bodied v. disabled, and the further assumption that it’s only disabled people who need accommodation, while able-bodied people who do the accommodating.
    But if you divide the world up that way, you’re missing a LOT of the ways in which we are all of us dependent on each other all the time. I, for example, need plenty of accommodation. Like any university professor, I need a university. I also need public roads so I can get myself to work. I needed the education that was largely paid for out of state funds. I need the recognition and response from other people that holds me in my identity as a professor. And so on and so on and so on.
    Some people need more accommodation than others, that’s true. But it’s not as if we have a social policy of accommodating only those Other people who are disabled. We’re all at each others’ mercy, and almost all in a position to give help where it’s needed.

17. I’m having trouble with the notion that a disability is mere-difference but might consist of differences, some of which might be genuinely bad. If disability A consists of two differences, one that is genuinely bad and one that is not, what about the person whose disability is just the genuinely bad one? Isn’t that a disability that is genuinely bad?
    Consider autism. Most people call autism a disability, but it seems to me that it’s not. My son has heightened memory along with nearly zero impulse control, low communication skills but incredibly good balance and agility, sensory processing difficulties but and tendencies to cause others harm and seek out dangerous activities for himself but also has little but love for everyone in his life. I would say the autism itself is not a disability, but components of it are disabilities. It’s a condition that includes disabilities and also includes features that are not disabilities. Those that are disabilities are precisely the ones that are bad. So it seems weird to define disability in a way that doesn’t allow that.
    On the mere-difference view, you’d have to say that autism is a disability that in general is mere difference but consists of components, some of which are genuinely bad, but we could never say that someone’s disability is all-things-considered bad. That seems to me to be drawing the lines in all the wrong places. The condition may not be all-things-considered bad for everyone with autism. But the parts of it that strike me as being unquestionably disabilities seem to me to be that precisely because they are the aspects that are unquestionably bad.
    His inability to control his impulses, which allows for no long-term planning, his sensory overload from busy rooms, his difficulty concentrating to learn to read, his difficulty expressing himself in more than a few words without just echoing people, and so on are certainly more difficult for him because of how society doesn’t accommodate him and that sort of thing. But they would make things more difficult for him even if society bent over backwards to provide for him as much as possible. Meanwhile, other aspects of autism seem intrinsically good, and others seem not-so-clearly good or bad, at least intrinsically. But it seems to me that the right thing to say is not that autism is a disability that isn’t accurately described as entirely bad. The right thing to say seems to me that it consists of parts that are not all disabilities.

18. Thanks for the constructive responses to my worry! In a parallel discussion on Facebook, I came to realize that my concern is most at home in some kind of luck egalitarian framework. For Dworkin, blindness is a paradigmatic example of brute bad luck that must be compensated for in terms of additional external resources, to a degree determined by a hypothetical insurance market, to ensure equal respect and concern for all.
    As it happens, I’m not a luck egalitarian. I’m much more sympathetic to the kind of democractic or social egalitarianism that Elizabeth Anderson, say, defends. According to Anderson, what we owe to each other is something like opportunity to function equally as citizens. Clearly, meeting this goal requires both organizing society so that it accommodates differences between people and providing different kinds of goods and services to people depending on what they individually need in order to participate in social life as equals (I’m trying to capture Hilde’s point here, in part). Since this approach doesn’t refer to people’s being badly off as a reason to provide services to them, it fits much better with a mere-difference view (although it doesn’t require it).
    (This may have been obvious to many all along, but since several people replied to my earlier comment, I figured I’d give some advice to my past self and others like him!)

19. Jeremy, after many years of living with my daughter’s disability and now finding a good community and good help for her, my notions of what is bad about my daughter’s disability have changed considerably. I realize that some of the most agonizing times were ones where she needed extensive medical treatment: for her scoliosis, her grand mal seizures, her many illnesses that were partly a result of the fact that she could not tell us what hurts, allowing illnesses to more become more serious than if she was able to complain earlier. None of these were direct effects of what most people would consider the worst of her disabilities: namely ones that concern intellection. I still worry a lot that we might miss some signs of an impeding illness and I worry about her vulnerability and inability to protect herself–which are more directly tied to her main disability. But I no longer suffer for her or myself about that main part itself (whatever that means). I don’t know how to classify parts of her “condition” as disability and other parts just as difference. Is her incredibly sweet disposition a consequence of whatever trauma there was to her brain before or at birth? I don’t know. She might always have been so sweet, no matter what the condition of her brain–and yet her sweetness has a character unlike other people I know. You’re right that I should say her lovely disposition is not a disability–its an incredible gift, and as my psychologist friend Walter Mischel said to me, what gives her great survival skills, that is, her capacity to make people love her. I think our children are disabled and different. Some aspects are positive, some neutral, and some that we either try to compensate for; or we try to guard against the worst of the possible consequences. Surely this complexity is just a more pointed and intense version of the complexity we all encounter in the bundle of capacities and incapacities, strengths and vulnerabilities that make up who we are. So perhaps we should say that there are strengths and weaknesses no matter whether inhabit bodies considered typical or atypical.
    To Antti: I think you are right on target when you attribute the distinction you were making to luck egalitarianism and I am with you in endorsing something like Liz Anderson’s view.

20. I’ve found the exchange about different aspects of disabilities very helpful, particularly Elizabeth’s comparison to sex/gender. I wasn’t suggesting that she needs to provide is a precise definition of disability, or a sharp line between neutral and non-neutral ones. In fact, the latter might be a hopeless and even hurtful endeavor. But the discussion makes it easier for me to articulate my misgivings about treating some disabilities as neutral or, even in part, as mere differences.
    The comparison to sex/gender seems apt for some disabilities, such as achondroplasia and certain types of deafness. Just as a woman could want safe, less painful childbirth, and controlled menstruation without wanting a “cure” for her female body, a person with achondroplasia could want a treatment for breathing or spinal problems without wanting a “cure” for atypical height or proportions. Similarly, a person who was deaf could want treatment for tinnitus without wanting to hear. In all of these cases, what is neutral is the difference “itself,” separated out from the associated conditions generally regarded as harmful, like shortened life expectantly, pain, discomfort, disruption, and further loss of function. Like exclusion and prejudice, these features are incidental to the difference in question, making it reasonable to value the disability but not the harmful features. I may be revealing ignorance or naivete, but I don’t see a similar contrast in the case of DMD, or other progressive conditions. Once you remove the muscle deterioration that causes breathing difficulty and early death, what’s left of DMD?
    Perhaps medically-arrested DMD would leave a stable condition that could qualify as a mere difference. Those with this condition would be physically weaker than average but might experience the world in interestingly different ways than “able bodied” people and develop adaptive skills giving them rich access to it. But such a “mere difference,” or a social group with that difference, doesn’t yet exist. There are groups of people with DMD who find the MDA Telethon offensive and seek to promote better access and inclusion rather than a still-elusive cure. But I’m not sure how the role of DMD in the social identities of their members makes DMD a neutral condition or mere difference. When I say I’m not sure, that’s not rhetorical. I really am uncertain, and would love to hear from Elizabeth or other discussants on this.
    Elizabeth’s responses suggest the picture of a core disability with essential features, whether somatic or social, and accidental features, somatic or social, that may be bad, good, or neutral. I doubt this is a picture she would endorse, though. Relatedly, I curious about her response to Jeremy’s proposal that multifaceted conditions like autism should be thought of as having disability and non-disability components, not as disabilities with neutral and non-neutral features. I’m not sure how much the disagreement is semantic. I think that some conditions/disabilities, especially neuroatypicalities, lend themselves to Jeremy’s components view more than others, from blindness to DMD. The “heightened memory” and “incredibly good balance and agility,” as well as the capacity for detailed visualization described by Temple Grandin, seem to be components of some varieties of autism in a way that keener hearing and echolocation are not components of blindness (although the latter are more likely to be developed, and perhaps more readily developed, by blind people than by sighted people).
    But I’m not sure how much the fit of a components view matters. What appears to distinguish neuroatypicalities from many other conditions classified as disabilities is how integral they are to the personal, not just social, identity of the individual. Ari Ne’Eman, founder of the Autism Self-Advocacy Network, argues that the question of a “cure” for autism is “intensely silly” because there is no way to separate out his autism from him. Although most of the congenitally blind people I have known would question the value of a “cure,” I don’t think it would be for Ne’Eman’s reason. Many of them don’t doubt that they could become sighted; they just don’t see any great advantage to it, and perhaps a serious downside. As Elizabeth and other discussants have pointed out, a lot of different conditions are classified or regarded as disabilities, and it’s tricky to generalize.

21. Just a quick clarification: I was trying to say that most blind people I know don’t doubt that THEY could become sighted; i.e., that conferring sight would not threaten their identity. But italics don’t carry over in the cut&paste.

22. Sorry for disappearing! This was the first Thanksgiving in over a decade that I’ve been able to spend with family, so I decided to unplug for a few days and enjoy the holiday.
    Steve, thanks so much for your questions. I think your basic summary of the gist of bad-difference views is pretty much right, but I haven’t wanted to phrase it like that for a few reasons, the biggest of which is that, in other work, I try to distinguish between a feature being bad or harmful simpliciter and being bad or harmful *for a particular person*. So, to return to the example of flat feet and ballet, I want to say that flat feet aren’t bad simpliciter (they’re pretty neutral, as these things go), but they can still be *bad for* the aspiring ballerina. Wanting to make that distinction has affected how I frame this stuff.
    With regard to your second point, I think you’re right that I should screen off other societal/socially-mediated stuff besides ableism. That’s a great point!
    Richard, I guess I’m finding it hard to see why a defender of a mere-difference view should think that it’s ceteris paribus worse to take the helpful medicine that might result in your kid turning out to be disabled than it is to take the helpful medicine that might result in your kid turning out to be gay. I’m wondering if you think there’s an extra force to the intuition here (as opposed to standard Parfit-style ‘handicapped child’ cases) that I’m missing? If so, could you expand on that?
    I should emphasize that the ceteris paribus clause here is huge, though. Whether any given case like this is *in fact* worse could depend on all sorts of messy real world factors – like whether you have health insurance, whether you live in a society that will enable you to provide your disabled child with access to education, etc. (But I think the similar messy real world stuff could, just as easily, affect the case of gayness. It shouldn’t matter at all to prospective parents in Manhattan whether their kid will grow up to be gay. It probably should matter to prospective parents in Uganda.)
    You say: “Simply put: Thalidomide was problematic in a way that it wouldn’t have been if all it did was make it more likely that one’s child would be gay.” I agree! But it’s really important to note that the badness of thalidomide simply can’t be put in terms of creating disabled children. Somewhere around 40% of infants negatively affected by thalidomide didn’t survive infancy. You can think that’s really bad regardless of whether you think disability is mere-difference! While I’m on this point, I’ll add that I think disabled people are often brought out as emblematic of the bad effects of things like thalidomide and folic acid deficiency (when the actual consequences are so much more pervasive) in a way that reflects a lot of fairly ableist biases.

23. The thing to remember when discussing disability is that humans are not bodies. We are brains. Our brains contain everything about us that matters. Our bodies are just robots made out of flesh that our brains pilot. Our bodies are just tools we use to fulfill our needs. They are no different from houses, cars, computers, or power tools.
    So to say that someone is no worse off because they are disabled is equivalent to saying that poor people are no worse off because they have a cramped apartment, a car that gets 2 miles per gallon, a 15-year old computer, and a broken screwdriver. Most poor people are reasonably happy. They live lives that are worth living. But that does not mean they’d be no better off if they had a house, a car with decent gas mileage, a new computer, and a power-drill.
    Being able to do stuff more easily is good. Not being able to do stuff is bad. That doesn’t mean people who have trouble doing stuff aren’t happy and aren’t living worthwhile lives. It just means that their lives would likely be even more worthwhile if they could do more stuff.
    I am not physically disabled. But there are a number of things I currently cannot do that I wish I could. I cannot see through walls, fly under my own power, bench-press a pickup truck, or detect magnetic fields. I consider my inability to do these things undesirable. Because no one else can do them either I am not considered disabled. But if someone invented a “cure” that would allow me to fly, see through walls, bench press trucks, and detect magnetic fields, I would take it. And my life would be better for it. I live a happy, fulfilling life right now. But my life would be even better if I wasn’t weakened by my inabilities.
    Furthermore, if I had choice between having a child who could fly, lift trucks, etc; or having a child who had “normal” levels of abilities, I would consider it unconscionable to choose the “normal” child over the superhuman child. It is good to be able to do more things.
    You might wonder, then, what my opinions on disability and “diversity” are. In my view, the kind of diversity that is morally valuable is diversity in personalities and life-goals. Remember that humans are not bodies, we are brains. Having different bodies does not increase diversity, because bodies are just tools for brains to use. A world where everyone had the same personalities and life-goals, but varied in the appearance and abilities of their bodies, would be much less diverse than a world full of people who had identical bodies, but very different personalities and life-goals.
    So does that mean I would oppose “curing” cognitive disabilities? It depends. Saying “we are brains” is a bit of an oversimplification. What we really are is the portion of our brains that contains our values, personality, and memories. There are other parts of our brains that are just tools for those parts to use. If the “tool” part of our brains are not doing as well as they could (for instance, if someone is cognitively impaired) this should be changed. People’s intelligence and ability to reason should be increased whenever possible. And I don’t mean increased to “normal” levels, I mean they should be increased as much as possible. By contrast, if part of your brain has radically different values from the typical human brain (for instance, it is homosexual) then that should not be “cured” because there is nothing wrong with it. It is a matter of different values, not different ability.
    One other thing I cannot emphasize enough: The reason I believe disability is a “bad difference” is that it makes it harder to live your life, not because it makes you abnormal. Imagine I had a choice between having Disabled Child A, who uses a wheelchair and wants to grow up to be a programmer; and Disabled Child B, whose disability stops her from running, but not from walking, and who wants to grow up to be an athlete. I would choose Disabled Child A, even though her disability is more “severe” because it interferes with her life goal less (since one needs to run to be an athlete, but does not need to walk to be a programmer).