Ethics Review Forum: Barclay’s “Disability with Dignity”, reviewed by Francis

Welcome to our PeaSoup Ethics Forum on Leslie Pickering Francisreview in Ethics of Linda Barclay‘s “Disability with Dignity: Justice, Human Rights, and Equal Status” (Routledge, 2019). 

From the blurb:

The philosophical literature on justice and human rights has often been limited in scope and somewhat abstract. Not enough sustained attention has been paid to the concrete claims made by people with disabilities, concerning their human rights, their legal entitlements and their access to important goods, services and resources.

This book discusses how effectively philosophical approaches to distributive justice and human rights can support these concrete claims. It argues that these approaches often fail to lend clear support to common disability demands, revealing both the limitations of existing philosophical theories and the inflated nature of some of these demands. Moving beyond entitlements, the author also develops a unique conception of dignity, which she argues illuminates the specific indignities experienced by people with disabilities in the allocation of goods, in the common experience of discrimination and in a wide range of interpersonal interactions.

Disability with Dignity offers an accessible and extended philosophical discussion of disability, justice and human rights. It provides a comprehensive assessment of the benefits and pitfalls of theories of human rights and justice for advancing justice for the disabled. It brings the moral importance of dignity to the centre, arguing that justice must be pursued in a way that preserves and promotes the dignity of people with disabilities.

Excerpt from the review:

Linda Barclay’s Disability with Dignity is an eclectic account of disability justice that draws from resource-based theories, capability theories, and human rights.  Dignity understood as equal relational status is the unifying theme that pulls these theoretical pieces together (9). Barclay’s eclecticism has the strengths that these different theories bring different insights and may become mutually supportive. However, it risks internal tension if the theoretical pieces do not fit well with one another because of the justificatory structures that underlie them. Barclay avoids this risk by only going so far as the pieces mutually support similar conclusions. Yet this minimalism may make it more difficult to achieve Barclay’s aim of addressing what disability justice can reasonably pursue.

First, a very brief sketch of Barclay’s main points:

  1. It is useful to conceptualize disability by melding impairments and environments into assessments of effective functioning, as does the WHO.This account strikes a balance between strong social models that attribute disability to social factors and strong medical models that attribute disability to individual imperfections.
  2. Discussions of disability justice must transcend conflicts between social and medical models of disability to see how and whether social change is uniquely positioned to address disability injustice. Not all attributions of disadvantage raise claims of injustice. Even when more inclusive designs are practicable, they may be so “prohibitively expensive” (34) that failure to provide them is not unjust.Barclay’s examples are design of public transit systems to accompany those who must always lie down or insistence that everyone also sign when they speak in public, instead of mitigation such as alternative paratransit for bed-users or interpretation services for the hearing impaired.
  3. Accounts of disability justice must propose the right kinds of remedies for disadvantage and justifying these remedies in a manner that upholds dignity. Resource-based theories, capability theories, and human rights must be tested in light of these criteria.
  4. Applying these criteria requires an account of the metric of justice—what justice compares—and the rule of distribution—how what is compared by the metric should be distributed (35).
  5. Resource-based metrics are the wrong kind of remedy because they focus on the individual goods rather than changes in social structures to address disadvantage. Resource-based metrics can, however, uphold dignity, as mere need for additional resources does not demean. Children, pregnant women, people injured in accidents, and the very old are among Barclay’s examples, a mixed list at best: pregnant women and the elderly especially might find perceptions of their increased neediness demeaning.
  6. Capability metrics have the major advantage of not prescribing how individuals ought to live their lives. Their exercise may require either resources or structural change. However, capability theory may not deliver remedies in a manner that adequately reflects dignity as equal status. Capability theory must explain why capabilities matter to a good life without disparaging those who cannot exercise them effectively, such as people with cognitive disabilities who may be unable to participate politically, imagine, think, or engage in critical reflection (74). Barclay concludes that “it is likely that the threat to the equal status of some people is ineliminable” (76).
  7. Some requirements of justice should not be construed as resources or capabilities. These include the rights to vote, to due process, and to non-discrimination. So a minimalist floor of rights must be added into the mix of disability justice.

This eclectic account of disability justice has several major strengths.  It focuses not on the who but on the what of critical disadvantage.  It sees that social factors must be addressed; disability justice requires structural change. And it emphasizes achieving equal status for all.  Nonetheless, it is worth thinking about the extent to which such an eclectic and highly general approach can address some of the core tensions about disability justice.  Here, I focus on two: the exercise of legal capacity by people with intellectual disabilities and access to health care.

The exercise of legal capacity by people with intellectual disabilities is a core value of the Convention on the Rights of Persons with Disabilities (CRPD). States parties shall “recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and “take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” This provision of the CRPD has spurred the development of structures of supported decision making to replace mechanisms such as guardianships that transfer decision making from the individual to a representative for the individual. It is qualified by the requirement to “provide for appropriate and effective safeguards to prevent abuse” that “ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review” (CRPD, Art. 12(4)).

Barclay reads this qualification as permitting legal capacity to be abridged: “Severe cognitive impairments are not like ‘race’, sex and physical impairments, namely, features of the person that are never legitimate grounds to abridge equality before the law or the broadest right against discrimination” (105).  But an alternative is not to abridge legal equality or rights against discrimination for some, but to understand that the exercise of legal capacity on an equal basis must take different forms for different people.

Barclay’s most specific discussion of the exercise of legal capacity by people with disabilities concerns the right to vote.  She argues in line with the CRPD that relying on proxies to vote the interests of people with cognitive disabilities fails to respect dignity and that it is prejudicial to assume that no one with cognitive disabilities has the capacity to vote independently.  On the other hand, she thinks that it would be implausible to assume that everyone with cognitive impairments in the right environment could possess whatever capacities are required for voting. Her justification for extending the franchise to all with cognitive disabilities is instead instrumentalist: that any benefits of denying the right to vote are outweighed by the disadvantages for dignity of identifying and excluding some from the exercise of this right (116). What gets Barclay to this conclusion is her assumption that achieving the relevant capacities will be impossible for some, but this assumption depends both on an individualist construction of the capacities for voting and on insistence that interpreting and applying rights requires reference to justice.

The CRPD approach, in contrast, is that others must work with and for people with intellectual disabilities to exercise the legal capacity to vote, subject to appropriate safeguards against abuse.  This process is not just representing the interests of people with intellectual disabilities but constructing an account of choosing with the person with disabilities, albeit an account that will need to recognize that there are persons who will not be able to cognize or express their views.  The account would look more like what Barclay insists upon in her final chapter about the importance of recognizing dignity in day to day interactions even with the most cognitively impaired. In this chapter, she writes elegantly in criticism of undignified treatment as hosing people down or leaving them in soiled diapers.  Further, she criticizes the role of “[c]ulturally shared schemas about the natural unfitness of disabled people to participate in work, school, families, politics and society” in influencing “the availability and distribution of resources” (137). These distributions predictably reduce the “educational, career, political and other achievements of disabled people” and further reinforce the cultural schemas of inadequacy (138).  The result is that [i]t looks like a natural fact about the world, about disability, that disabled people are incapable of full participation” (138). It is puzzling why Barclay fails to see that her individualist construction of the capacities for voting may incorporate some of these culturally shared schemas.  Perhaps the explanation lies in her minimalism about justice, for she insists that CRPD rights must be interpreted through a lens of what justice can reasonably require and she thinks that justice cannot reasonably require overly excessive resource expenditures on the disabled.

The impact of her minimalism is even clearer in Barclay’s discussion of access to health care. The problem as Barclay (and many others) see it is that the more complex health needs of people with disabilities be very expensive.  This is a particular problem for the United States which does not offer universal access to health care, but it is also a problem in societies facing resource constraints. Barclay’s rights minimalism insists on limiting access to health care by a requirement of “reasonable accommodation” (89) that considers “issues of feasibility and cost … [that] legitimately influence the degree and nature of inclusion required of a just society” (89).  It is not discrimination, she contends, to refuse to provide equal outcomes when so doing imposes burdens on others (90).  Equal outcomes, to be sure, may not be achievable for anyone, even those without disabilities.  But what a civil rights approach requires when resources are limited is not imposition of a reasonable accommodation limit only on the disabled who are seen as exceptionally needy, but consideration of strategies of reasonable accommodation and inclusion for all.

Barclay’s book is an exceptionally thoughtful account of disability justice.  It aims to speak to people who espouse very different approaches to justice:  resource distribution, capability assurance, and minimum floors of rights.  It seeks to see what all three of these approaches can support.  This is a critical project for supporting disability justice.  But it also exposes tensions for theories of disability justice to continue to address.

18 Replies to “Ethics Review Forum: Barclay’s “Disability with Dignity”, reviewed by Francis

  1. Thank you to Leslie for such a thorough and thoughtful review of my book, and for providing an opportunity for further discussion.

    Before turning to Leslie’s two central concerns, it will be helpful to first say something about the general approach I take in the book. Leslie refers to it as both ‘eclectic’ and ‘minimalist’. While this is true, both features stem from the broader “non ideal” approach to political theorising. Non ideal theory means a number of different things. What I mean by it is what Sen had in mind when he denied that a ‘transcendental’ theory of justice is necessary in order to make progress toward a better world. I reject the common assumption that a comprehensive theory of justice is necessary to identify injustices and propose remedies. Why do I avoid articulating and applying such a theory to the case of disability? The book itself is meant to provide an answer: no single, comprehensive theory of justice will satisfactorily identify and provide the best remedies to the complex and multifarious injustices routinely endured by people with disability. I hope to have demonstrated this in my book. As I state in the introduction, we should use whatever normative resources we can to compellingly prosecute the case for justice. In my view, being eclectic is a virtue in this debate.

    I’ll start with Leslie’s second concern. According to Leslie, I would restrict access to health care if accommodating the health needs of people with disability was not ‘reasonable’, according to the ‘reasonable accommodation’ clause of most disability discrimination legislation and the CRPD. This is a fairly serious misunderstanding of my view, which I’m anxious to rectify. The sections of my book that Leslie quotes concern my discussion of Articles 9, 19, and 21 of the CRPD. But these three Articles are concerned with accessibility issues to which the ‘reasonable accommodation’ is typically thought to apply: to transport, buildings, housing, in-home supports and to information and communication. Health care is treated separately in Article 25 where it is stated that people with disabilities are to have “the same range, quality and standard of free or affordable health care and programmes as provided to other persons”. I agree. I do not discuss Article 25 in my book because it never occurred to me to consider seriously the proposition that people with disabilities should be denied health care of the same range, quality and standard that non-disabled people have access to. Fortunately, in every advanced economy apart from the U.S. this is uncontroversial public policy (which is not to deny of course that in practice people with disabilities can be subject to discrimination within health care settings). While Leslie prefers to characterise access to health care as a matter of non-discrimination, I argue at length in my book that it is implausible to suppose that everything that we owe to one another can be defended on the grounds of non-discrimination. Why try to shoe-horn complex debates about the distribution of benefits and burdens into a narrow anti-discrimination framework? Along with Anita Silvers, Leslie believes that justifying any distribution, including that of health care resources, on grounds other than non-discrimination is demeaning. In her longer review, she claims ‘welfarism’ casts people as exceptionally needy (by ‘welfarism’ she means any theory of distributive justice, rather than what is usually meant by that term in moral philosophy). I argue that such a view is very implausible. I ask whether people who receive pre and post natal care should feel demeaned because they benefit from a distribution of health care resources that others don’t need. Leslie thinks that indeed such people might find ‘perceptions of their increased neediness demeaning’. But the cases are endless. People with cancer need resources that those without cancer don’t need; as do people with heart disease, arthritis – and so on. For the record, most people with disabilities access health care for just the same range of reasons that others do: for common diseases, discomforts and functional limitations that are routinely treated by health care professionals across a vast range of the population. Many people with disabilities will require no more than the majority in terms of total resources utilised over a life-time. Why should any of us feel demeaned for accessing such resources? Rather than repeat the arguments in my book, I’ll again appeal to some ‘non-ideal’ theorising: while ‘civil rights’ might be the most effective way to promote access to universal and affordable health care in an outlier state like the U.S., it is an utterly foreign way to prosecute the case in other advanced economies which take such access as a basic, non-negotiable, distributive entitlement of every citizen.

    The other main issue raised by Leslie concerns people who are often said to have ‘profound’ or ‘very serious’ cognitive impairments. There is of course much debate about whether such impairments exist, and even more debate about which people fall into those categories. Leslie rejects my position as too minimalist in that I do not deny that some people will not have sufficient capacity to vote (although I argue that such people should have the right to vote in any case on the grounds that stripping people of voting rights or relying on guardian voters is an unacceptable threat to equal social status). In line with some of her previously published research, Leslie believes that we should reject an ‘individualist’ account of capacity, and instead understand that others can work with people with disabilities to assist them to make decisions. Leslie is puzzled that I do not grasp this possibility give that elsewhere in the book I argue that stigma produces false views that people with cognitive disabilities cannot be productive, or pursue educational and cultural opportunities, or form close relationships or make most decisions for themselves (with or without support). But my recognition of the widespread role of stigma in sustaining false beliefs about incapacity does not commit me to the strong view that all people with cognitive disabilities can achieve capacity if assisted in the right way. I do not wish to endorse such a strong view. Ultimately I am unconvinced by some of Leslie’s and Anita Silver’s previously published arguments in favour of universally achievable capacity. Rather than trying to rehearse these complex arguments here, perhaps I can instead note that I suspect our intuitions might also diverge on how we ultimately show respect for people with very profound cognitive impairments. My mother-in-law is in advanced stages of dementia and is often extremely anxious, confused and sad. When we try and reach judgements about what would make life better for her is it more respectful to believe that our decisions are also hers, or to concede that despite our best and most loving, attentive efforts, we sometimes just don’t know what she wants or wills (or, perhaps, would will)? In some of these vexed situations, I’d be inclined to distrust the confidence of someone who declares their decision is also hers, and much more comforted by a shared appreciation of our own limits. She remains her own individual person, with all the limitations that entails for our access to her mind.

  2. I take it that what is being discussed here is not ethics, but some kind of public policy, which we identify by the term distributive justice. I want to comment specifically on a topic raised by the author in her reply to the review: briefly, that of welfarism. I apparently have a very different view on these matters. My concern is less with regard to some notion of societal justice and more with the individuals involved. Apparently, “Leslie” finds charity demeaning, and we ought to avoid at all costs being “demeaned.” I, on the other hand, think that we all ought to be charitable and all ought to recognize our dependence upon charity. While I can appreciate the importance of rights for social policy, I am not a fan of them when it comes to individuals themselves. For one, I don’t think they provide the cement that binds communities together. Instead, I would rather suggest that something like mutual dependence (dare I say a kind of love) is what binds communities to each other. This mutual dependence reflects our mutual weakness. To say that the reception of charity is “demeaning” is to say that our mutual dependence is demeaning, a view founded on the very attributes that tear communities asunder. Instead, I would argue that we, none of us, deserve anything. We are all weak and dependent beings. That we receive any good is cause for thankfulness and gratitude, attitudes that I suggest are paramount for flourishing communities. I have not much considered how these attributes are instantiated in public policy. Somehow public policy would manifest them. What I suggest is that public policy not devolve from the top down, but from the bottom up, i.e., that it be founded upon those attributes of individual weakness and mutual dependence. Lacking this, it will be no more than an automaton: a being without a soul, a make-believe semblance of a human community, “just” on the outside, empty on the inside.

  3. Thanks for your contribution Bill.
    I agree that we are mutually dependent, and that we should acknowledge our dependency on others. Some feminist moral philosophers have defended sophisticated variations of this view. However, from the perspective of disability one is wary of any emphasis on ‘dependency’ given how frequently people with disabilities are falsely cast as dependent on others: as essentially needy and incapable. Insofar as some people with disability might be ‘dependent’ that is often because of discrimination and exclusion which prevent them from securing their own needs. Leslie raises these concerns in her review.
    Distributive justice, which is a branch of political philosophy, is concerned not with charity, or with altruistic responses to dependency, but with what we owe one another. I disagree that we do not owe one another anything, notwithstanding the enormous debate about what that might be. Whether we begin from the facts of coercion, social cooperation, or reciprocity, questions arise about the fair terms of our engagement.

  4. Thank you for your reply. In what I said, I wasn’t thinking specifically of the “disabled.” You suggest that notions of “dependency” are loaded when it comes to the “disabled.” In my emphasis upon mutual dependence, I can see how that mutual dependence might weigh heavily on those that we might regard as not “pulling their weight.” That is, that mutual dependence might indicate a kind of utilitarianism: a mutual utility. Clearly, something more is required. Even children, while helpless and “unproductive” have a promised or invested utility. Consider, then, what I said about charity. You say that I endorsed the notion that we “don’t owe each other anything.” Perhaps that was somehow implied in what I said. In any case, I don’t agree with it. I specifically said that I don’t think we deserve anything. This is too important a principle for me to abandon it. One might say that if we don’t deserve anything, then no one is “obligated” to give me anything, but that does not logically follow from you not deserving what is given. I have problems with the word “obligated.” I’m not sure what that entails. I will only entertain a notion of it that is a kind of moral absolute, independent of time, place, or government. We should love our neighbors, but that doesn’t mean that they deserve our love. Were that the case, it is a conditional love; and if conditioned, we are falling into the utilitarian trap mentioned above about the “disabled.” Put simply, we ought to love the “disabled” (as for the “abled”), but not because they deserve it. One might say that everyone deserves this treatment by virtue of them being human or alive. I still oppose the idea. I am wary of any notion of positive deserts; and this because I think that once we have in mind this notion of deserts, it radically modifies our relationship with others. One might argue that deserts are seen as a kind of mutual transaction, whereby, I deserve to be loved (treated with respect, whatever) and you deserve to be treated the same, a kind of Gold Rule. My description of the paradigmatic relationship with the other is different: I deserve nothing, and I ought to love you. In this description I have explicitly kept silent about whether you deserve something. This is because my loving you is not conditioned upon your deserts. As such, we all live by charity and act according to it.

    There are likely problems with this position, but its an ideal that I have adopted for most of life. You are forcing me to consider it more closely. As such, it is more a personal ethic than a public policy. Inasmuch as the individual reflects the state, there ought to be a consistent public policy. It does affect my views on guilt and justice, but we’ll leave at that for the time being. Thank you.

  5. I’d like to pick up on something that wasn’t mentioned in Francis’ review. For me, one of the most illuminating sections of Barclay’s book was the final chapter, where she discusses the daily indignities faced by people with disabilities. She gives an example of a person who is told she is brave for simply getting on the train and going to work; another person who is left on the toilet with the door open, so nurses can keep an eye on her while they’re attending to other tasks; and yet another of someone who is regularly laughed and pointed at while going about his daily business. Such everyday interactions, she argues, can directly constitute a failure to treat others as equals – itself a profound moral wrong – and also contribute to social schemas that systematically position some as lesser within our society.

    I think there’s something really important about Barclay’s idea that dignity requires being treated as an equal in our day-to-day interactions. What I’d be keen to hear more about, though, is what this looks like in practice, especially when we focus not just on the most egregious cases – people with disabilities being collectively hosed off, or left in soiled underclothes for days at a time – but also on the more mundane interactions that take place both within healthcare settings and the broader public sphere. How we greet and address one another; who we look in the eye and for how long; how people are clothed and presented. These kinds of interactions presumably also contribute to equal standing, both in what they communicate to the participants themselves about their relative standing, and what they communicate to bystanders about participants’ relative standing.

    Where it all gets a bit messy, I think, is trying to work out which social meanings are relevant in any given encounter. I take it the norms of equal treatment in question are going to be relative to quite localized communities: what counts as treating someone as an equal in community x might be very different from what counts as treating someone as an equal in community y¬. This raises some issues I’d be curious to hear Barclay’s thoughts on. First, there’s the possibility that what counts as a norm of equal treatment from the healthcare worker’s perspective might be experienced as being treated as lesser from the patient’s perspective. This seems particularly likely when there is a large age gap between the healthcare worker and the patient, and/or when they come from different cultural backgrounds. Moreover, what would count as being treated as an equal from the patient’s perspective might be experienced by the healthcare worker as positioning them as lesser. (For example, I think many Australians find calling someone else Sir or Ma’am pretty obsequious; but for someone from the US South to not be called Sir or Ma’am can be experienced as a deliberate slight.) Relatedly, I worry that many of our social conventions are wrapped up in problematic gender norms, which create double binds for those trying to treat women in particular as equals. If we’re in a society where it’s a mark of disrespect not to hold a door open for a women, do we treat her as an equal if we hold the door, or if we refrain from doing so? It seems like whatever we do, there’s a sense in which we’re failing to treat her as an equal.

    One upshot of this might just be that we can’t truly treat one another as equals until we live in a society that’s egalitarian all the way down – but in the meantime, I’m wondering if Barclay (or anyone else!) has thoughts on the messiness of equal status, once we recognise its connection to everyday interactions?

  6. Thanks so much for these great questions Suzy. I agree that it is a very messy business knowing how to successfully treat each other as having equal social standing (which I call dignity). It is messy for all the sorts of reasons you raise in your comments: that there are different social conventions and norms, and that even when we largely share such conventions, we can disagree about how to ‘read’ a given token of behaviour.

    The central question is whether this makes the moral demand to treat one another as social equals an impossible ideal. I don’t believe this follows. After all, think about how we determine whether someone has been treated with ‘compassion’, ‘respect’ or ‘equal consideration’. In all of these cases we are also likely to come up against the prevalence of social conventions and shared understandings (among other things) that will affect people’s perceptions of whether someone has been treated in accordance with the relevant value.

    So I accept the messiness, and think that there will sometimes be unavoidable disagreement as to whether or not someone is treated as having equal social status. But this doesn’t leave us without any means at all to resolve disagreements. Here are some of the more obvious ways to work through the messiness:
    (a) Sometimes we can readily understand that there is a cultural difference at stake, such that the American who visits Australia quickly realises that he is not being treated as an inferior when no one calls him ‘sir’. Those of us who have visited the U.S. very quickly come to realise that we do not enjoy an elevated social status just because people call us Ma’am! (b) When people do not enjoy equal status, then we would expect norms of respect to come apart from social conventions for treating each other as social equals. The case you mention about holding doors (only) for women is a case in point. Cheshire Calhoun has made the point that conventions of respect can come apart from actually treating people with respect, in which she uses just this door-opening case. I’d say that conventions of respect can certainly come apart from treating people as social equals. There are extensive social norms of respectful behaviour in hierarchical societies whose primary function is upholding social status differences. Often we have no trouble picking this out (think of social norms under Jim Crow, or such norms in caste societies). It is for this reason I argue that dignity is not the same as respect (c) It is common enough for us to be mistaken about whether we are actually treating others as our social equals. Unfortunately, I don’t think this is unusual in caring for the sick or frail, or for people with disabilities. The carer or staff member who uses the sing-song voice, or jumps to help without being asked, or talks just that little bit too loud, might indeed believe that they are treating their patients or clients well. They might take themselves to be compassionate and caring. Perhaps they are (think about the defensive response: “I was only trying to help”). But as many older people and people with disabilities complain, such behaviours are often patronising, and assume that their recipient occupies some lower social standing. At the very least, it is not unreasonable for such individuals to reach that conclusion given the widespread stigma to which they are subject. I think all of us have had the experience at some time or another of thinking we were doing to the right thing, only to discover that the person on the receiving end has taken some offense because they ‘read’ our behaviour as assuming they did not occupy the same social standing as us. I think this kind of disagreement is probably unavoidable in any society where discrimination, oppression and hierarchy exist (which is every society). There is nothing to do here but discuss and contest. Sometimes the initial perception of having being treated as a social inferior will dissolve; sometimes it will be one’s confidence that one is treating others as equals that will take a hit. From such discussion and contestation more acceptable (albeit local) shared conventions can emerge (Do not call me sweetheart!).

  7. Suzy I completely agree that the examples Linda gives in the last chapter of the book are absolutely compelling. They are some of the best parts in the book. I also agree with Linda that non-ideal theory how to approach problems in political theory. Where I think we disagree is that she thinks that more agreement may be possible among some foundationally different positions than I do. Instead, I would start on the ground with the kinds of examples Linda gives–and then consider how to build up from them to create more inclusive and dignity-respecting societies.

  8. Thank you so much, Linda, for your thoughtful reply to my review. Here’s a longer one to your comments about health care. I think there are two importantly different sets of problems about health care that we have in the United States (and the pandemic is laying them bare, even if they hadn’t already been). One set of problems is about discrimination: discrimination on the basis of race, sex, disability, non-citizenship status, sexual orientation, and so on. It has been documented over and over again that people of color get worse health care (whatever variable you control for that you think might be relevant to the care people are offered) and have worse outcomes. The ACA attempts to remedy some of this in facilities receiving federal funding, but is only a small part of the solution (even if it were effectively enforced). Tennessee discriminated against people with disabilities when it limited hospital days to 14 in its Medicaid program, but the Supreme Court said that states could decide what benefit they wanted to provide, as long as they allowed access to the same benefit for everyone. (Sam Bagenstos calls this the “access/benefit” distinction.) Anita and I tried to argue against this, that the ruling confused accommodations for individuals (which the Court erroneously interpreted as “affirmative action” demanding all medical care needed, certainly not something available to others) with reasonable modifications distributing the burdens of cost-cutting fairly.
    The other set of problems we have is the more general set of injustices that we have, including injustice affecting social determinants of health, access to health care, the role of private profit in health care, and I could go on….These are more general problems of injustice that start with the idea that health care isn’t a social responsibility but something that individuals should be expected to provide for themselves.
    So I agree with you that not everything can be shoved into the anti-discrimination box. I think where we disagree is about how to work out non-discrimination, not about justice more generally….

  9. Thank you all (author, reviewer, commentators) for this fascinating discussion. Suzy Killmister’s comment reminded me of the essay in last weekend’s NYTimes by Elizabeth Jameson (“To Feed Me Is To Know Me”: https://www.nytimes.com/2020/07/10/opinion/sunday/ms-disability-food-eating.html), where she describes her experience living with MS and being fed by others.

    Some of the experiences that Jameson describes fall into the category of indignities that Barclay very thoughtfully considers at the end of her book–being left facing the wall while others in a group say their farewells, waiting with mouth open for someone to finally deliver a morsel of food but watching as that person gets distracted by something else.

    Other experiences that Jameson describes, though, strike me as more similar to the messy cases that Killmister brings up–the appropriate pace of a meal with a loved one, for example. Like Killmister’s cases of cultural difference, these cases of personal difference aren’t obviously about straightforward indignity. Context matters, and in this case it’s the contextual preferences of the individuals.

    One of the saddest points in Jameson’s essay is when the series of stories build up to her saying, “Because of my disability, I constantly worry if I am being too demanding when I eat. When I communicate how I want to be fed, I sometimes feel I am a burden, but I also feel that this communication is essential if I am going to be treated as a person who deserves to enjoy her food, her sanity.”

    Whether it is cultural differences or personal differences, communication goes a long way towards identifying others’ preferences which are deserving of consideration. All too often, though, the burden of communication falls on those living with disabilities, which then leads to the feelings of being a burden shared by Jameson. A way to combat this, it strikes me, is to shift the burden to those living without disabilities. “Am I getting these bite sizes right?” is sort of the equivalent of “Do you prefer to be called ‘Ma’am’, ‘Ms. Thompson’, or ‘Sarah’?” Simply asking someone about their preferences is a way to show respect.

  10. I understand better now how you are thinking about the issue of health care Leslie. We have extremely serious inequities with respect to access to health care in Australia too: Indigenous people in particular have health outcomes and life expectancy far below that of the non-indigenous population. The reasons for this are very complex, but the provision of high quality health care in more remote areas is part of the issue. It is also the case that individuals can be discriminated against in the provision of health care, especially, again, indigenous people. For example, a recent study in Australia showed that people with intellectual disabilities are much more likely to die in emergency departments than people without such disabilities. There continue to be scandals on a regular basis of individual neglect and abuse, including a recent case where an Indigenous woman miscarried a late-term pregnancy because hospital staff simply did not believe her claims of low foetal activity. They assumed she was after drugs.

    So I didn’t mean to downplay the reality of this, and the central role of anti-discrimination law in addressing some of these injustices. Rather, in the book I was focussed on the more general question of what normative approaches (human rights, egalitarian theories, capabilities approach etc) can defend in terms of broad distribution of benefits. I focussed on where I thought they would each fall short with respect to disability. What I didn’t discuss, but perhaps should have, was whether any of them would fall short with respect to justifying free or affordable health care of high quality to all citizens. I took it for granted that plausible versions of each of them would justify such health care (certainly the CRPD does, as do most proponents of egalitarian theories and the capabilities approach). Given that at this level of discussion the provision of free or affordable health care for all citizens is also not contentious in most advanced economies, I did not discuss the issue in my book. (I think it is almost inconceivable in places like the UK, Europe, New Zealand or Australia that a government would pass a law limiting hospital stays to two weeks). As you put it, I was more interested in addressing the more general problem of what distributions can be justified, rather than focussing on how to deal with the violation of these avowed principles on the ground. I agree that anti-discrimination law has a vital role to play with respect to on the ground violations in all countries.

  11. Thank you for the link to Jameson’s amazing article. I agree that in many instances what we need is nothing more (or less) than open communication.

  12. This has been a rewarding exchange to follow. It seems to have resolved some of the disagreements between reviewer and author and clarified others. I wanted to weigh in on two points, one on which the contributors have some remaining differences, the other an area of consensus.
    The first concerns the CRPD’s commitment to the decision-making capacity of all persons. I find it slightly surprising that Leslie appears to endorse this approach, which — as I understand it (and I may well be mistaken) — creates an irrebuttable presumption of capacity. Leslie herself appreciates “the need to recognize that there are persons who will not be able to recognize or express their views.” The CRPD presumption does serve to counteract the pervasive tendency to underestimate the capacities of people with intellectual disabilities. Under its mandate, a determined effort must be made to identify and support decision making capacities that might otherwise be overlooked. But this is an instrumental benefit — no less instrumental than the justification Linda offers for a universal franchise. And there is a corresponding risk: that supportive decision makers will, in cases where the individual actually lacks the capacity to recognize, express, or even form views on the matter in question, impose their own values under the guise of “support.” In her own work with Anita Silvers, Leslie is keenly aware of this danger, but in this exchange, she doesn’t seem to give it sufficient weight.
    My second comment concerns the “messy business” of treating each other as equals in our routine interactions. Suzy questions whether we can really do so unless our society is egalitarian “all the way down:” Linda observes how cultural and geographic variability in social norms makes misunderstanding and disagreement inevitable. My suggestion is that even if we cannot fully treat each other as equals without structural equality and must accept frequent ambiguity and misunderstanding, we can try to construct practices that more clearly express social equality. This is the function of evolving rules of etiquette, as understood by thoughtful advocates like Judith Martin (Miss Manners). If manners have long served to express and enforce, social hierarchy, they can be refashioned to express and enforce social equality. This has already happened to a limited extent in the treatment of women, although as Suzy points out, much uncertainty remains. It has barely begun in the case of people with disabilities. The heavy-handed assistance frequently “offered” to people fully capable of making their way in the world is unwelcome and demeaning, and disability advocates have done an effective job of challenging the presumption of helplessness. But there are many occasions when it is reasonable to suspect that a stranger, with or without a disability, needs help, and it would be unfortunate if people with disabilities were denied needed assistance because others found it too awkward to ask. Among acquaintances and friends, good communication is the key, but in passing encounters among strangers, communication is part of the problem. It is here that established norms can help to reduce friction and express respect, as well as lifting the burden on people with disabilities to explain themselves to strangers.

  13. I would be interested to know why ETHICS selected a nondisabled philosopher to write a review of Linda Barclay’s book. I think that a review of this book written by a disabled philosopher (especially a disabled philosopher whose work goes beyond the constraints of analytic political philosophy) would very likely revolve around different concerns and questions than the review that Leslie Francis has produced and the discussion here has, consequently, generated. Indeed, this review/discussion seem to reproduce the persistent (and growing?) dominance of nondisabled philosophers in the field of philosophy of disability.

  14. It seems to me that if anyone other than the reviewer had reviewed Linda Barclay’s book, the review and subsequent discussion would have been different, very likely very different. It doesn’t seem to me that we can meaningfully divide the world of reviews into those by the “disabled” and those that are not. Having not read the book, I don’t know how important the experience of being “disabled” is. If it is minimally important, then neither the author nor reviewer need not have such experience. Perhaps were the author disabled (as far as I can tell she is not), the book would have been different. Linda Barclay says of herself: “I am a political philosopher, with a primary focus on justice, equality and dignity. I have published extensively on the meaning and function of these ideals in relation to gender, multiculturalism and disability.” She is concerned for an appropriate understanding of dignity for all. She serves on a national counsel that explores what dignity might mean for the aged. She herself is not aged. She is a woman. Can she say anything, then, about what dignity would mean for a man? Are there as many dignities as there are people? If so, she is wasting her time. Is there a human experience that serves to help inform us of all humans? If none of this is true, we have to begin doubting the very project of doing anything like philosophy. By all means, let there be “disabled” philosophers. Let there be “strange” philosophers in the sense that Schutz means a Stranger. But we have to hope that there is something like an elephant and not simply parts without a whole or reference.

  15. As usual, thoughtful an helpful reflections David – thanks. I hadn’t thought about purposefully attempting to create norms or conventions that express equal respect. I think I’d been assuming that they more emerge slowly and less deliberately through the vagaries of social exchange.

  16. I’d be really interested to hear about some of the issues that have so far been neglected Shelley, and will do my best to respond to them (within the confines of my limited analytic political philosophy know-how!).
    There are certainly genuine normative considerations at stake about who gets to talk about whom in academic research. I think these issues are extremely complex when it comes to disability. Leslie’s work (both academic and outside academia) has focussed heavily on advocating for people with serious cognitive impairments and mental health issues, and then promoting their voices when they cannot do so themselves – in academic research, and legal and public policy settings. I’m unsure why you believe she is less qualified to do this than a philosopher with sensory or physical disabilities who may have little or no contact with such people and little understanding about some of their quite unique perspectives and experiences. I guess this in turn raises interesting questions about how we conceptualise the group ‘people with disabilities’. I’ve always found it odd that we lump such a very diverse group of people together, and especially so if we wish to do so for the purpose of deciding who can and can’t talk for or about other members of the group within academic research. The complexities pile on further within the context of professional relationships: how could I even be confident that one of my colleagues was not disabled unless I know them very well personally? This is obviously all very vexed, epistemically and normatively. The way I wade into this morass is to make a judgement about whether a contribution (paper, book, blog post) displays genuine engagement and understanding of the complex philosophical issues around disability, especially those raised by philosophers who are disabled. If it doesn’t, I tend to ignore it and am sometimes disappointed that others don’t choose to do the same. If it does, I view it as a legitimate and worthy contribution to the field. I’m very grateful for Leslie’s thoughtful review, especially coming from someone with such deep appreciation for the ways in which people with cognitive impairments have been silenced and oppressed.

  17. I will leave to the side Shelley’s presumption about whether I am, or am not, a “nondisabled” philosopher. I will simply point out that is a presumption that it is dangerous to make of anyone in a world in which many people choose, rightly or wrongly, not to disclose non-obvious disabilities because of the disadvantages that might ensue.
    Let me take up David’s point briefly. The point of the CRPD is the presumption of legal capacity and how to ensure that people are supported in its exercise. This is not an instrumental argument; it’s a view about how everyone ought to be regarded and supported in different ways. David is correct that there are grave difficulties about exploitation as well as about usurpation in the sense of believing that one can speak for someone else’s values or experiences. These difficulties are, I fear, far more universal than is generally recognized. What’s critical is to keep thinking about how to address them rather than to shove them aside.

  18. Linda, are you familiar with the work that I have done on the demographics of philosophy with respect to disabled philosophers? That is, are you familiar with the work that I have done on the dire under-representation of disabled philosophers, especially disabled philosophers of disability, in the profession? If not, here are a few things that you might consider looking at:
    https://philpapers.org/go.pl?id=TREIFP&aid=TREIFP.1
    https://philpapers.org/go.pl?id=TREDP-2&aid=TREDP-2.1
    https://www.press.umich.edu/8504605/foucault_and_feminist_philosophy_of_disability

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