Barclay, Linda. Disability with Dignity: Justice, Human Rights, and Equal Status. New York: Routledge, 2018. Pp. 142. $124.00 (cloth).

Abstract

Previous articleNext article FreeBook ReviewsBarclay, Linda. Disability with Dignity: Justice, Human Rights, and Equal Status. New York: Routledge, 2018. Pp. 142. $124.00 (cloth).Leslie P. FrancisLeslie P. FrancisUniversity of Utah Search for more articles by this author PDFPDF PLUSFull Text Add to favoritesDownload CitationTrack CitationsPermissionsReprints Share onFacebookTwitterLinked InRedditEmailQR Code SectionsMoreLinda 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 inconsistency or at least internal tension if the theoretical pieces do not fit well with one another because of the justificatory structures that underlie them. Barclay attempts to avoid this risk by only going so far as the pieces mutually support similar conclusions. Yet this minimalism may jeopardize her aim of addressing what an account of disability justice can, as she writes, “reasonably prosecute by way of the entitlements of people with disabilities—to jobs, housing, personal resources, political opportunities, legal protections and the like” (1). After sketching Barclay’s accounts of disability, disability justice, and dignity, I illustrate these risks by deploying her account for two illustrative problems: supported decision-making for people with cognitive disabilities and accommodation of differences in access to health care.To conceptualize disability, Barclay draws initially on the International Classification of Functioning, Disability and Health (ICF) of the World Health Organization (https://www.who.int/classifications/icf/en/), a classification that melds impairments and environments into assessments of effective functioning. Reliance on impairment to conceptualize disability has been criticized as attributing lack of function to the individual only and not to the environment and as misrepresenting atypical function as disadvantage and hence bad. To this complex set of criticisms, Barclay replies that disability justice does require identifying the roles of individual and social factors in functional loss and disadvantage (23). She further insists that identifying such associations does not require normative evaluations of impairments or atypical functioning as bad. Instead, stereotypes, mistaken assumptions, prejudice, or structural arrangements may be at the root of any disadvantage associated with an impairment. For Barclay, the concept of disability refers to “individuals with an impairment associated with some disadvantage, especially loss of functioning either with respect to the ability to execute certain tasks or to participate fully in some aspect of social life. No assumptions are made about why impairments are associated with loss of functioning or other disadvantage: sometimes the causes may be entirely social, perhaps sometimes not” (27). But without the concept of impairment and accompanying distinctions among impairment, functioning, and disability, Barclay believes, we will lose much of what has been central to movements for disability justice (23).Barclay’s account of disability thus strikes a balance between strong social models that attribute disability to social factors and strong medical models that attribute disability to individual imperfections. But Barclay goes further, arguing that 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 to justice, she contends. Here Barclay correctly identifies the impetus behind social models of disability to the judgment that the role of social factors in disability disadvantage justifies social change. But she would divorce the contribution to disadvantage from the claim that justice requires social change (32). As a practical matter, Barclay believes, social design will advantage some and disadvantage others; despite aspirations of universal design, “it is not possible to design a social environment that is equally hospitable to all people,” nor unjust to fail to do so (33). 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. Moreover, on Barclay’s view neither the social nor the medical model is committed to the corresponding kind of remedy for disability injustice (41).Barclay’s account of disability justice insists on two criteria: proposing the right kinds of remedies for disadvantage and justifying and delivering these remedies in a manner that “upholds the dignity of people with disabilities” (45). Her account then draws from resource-based theories, capability theories, and human rights and tests each in light of these criteria. In developing the implications of these approaches for disability justice, Barclay distinguishes between the metric of justice (what justice compares) and the rule of distribution (how what is compared by the metric should be distributed) (35).On Barclay’s view, theories using resources as the metric, such as Ronald Dworkin’s, are inadequate to provide the right kinds of remedies for disability injustice because they focus on the goods individuals have rather than changes in social structures to address disadvantage. Resources may still matter for some people, however; Barclay contends that even with more just social structures people with significant cognitive disabilities or severe physical disabilities will still need additional resources for their support and care: “even cursory attention to the lives of people with very complex disabilities and their carers, including people with severe cognitive disability, tells us that individual resources matter enormously, and, in some cases, a lot of them are needed to secure against degrading and oppressive disadvantage” (48).On the other hand, perhaps surprisingly, on Barclay’s view resource-based accounts do meet the criterion of delivering remedies without demeaning people with disabilities. A common argument that resource-based theories demean sees claims for special resources as stemming from neediness due to individual bad luck and hence portraying people with disabilities as inadequate and dependent objects warranting compensation for deficiencies. The argument is that resource-based theories offer welfarist reasoning for disability justice. Barclay replies that mere need for additional resources does not demean; children, pregnant women, people injured in accidents, and the very old are among the examples she gives. (This is a mixed list at best; pregnant women and the elderly especially might find perceptions of their increased neediness demeaning.) Barclay concedes that some may respond to additional distributive shares with shame or pity but sees these as subjective responses that do not jeopardize the equal status required by dignity seen as relational equality. This reply, however, may not fully appreciate the objection that welfarism treats people as recipients of benefits rather than holders of equal status entitled to civil rights, an objection that will resurface in the example of access to health care below.Barclay then turns to capabilities rather than resources as the metric of justice. Theories such as Amartya Sen’s that emphasize opportunities to function have major advantages as remedies for disability injustice, Barclay argues. Capabilities as opportunities do not prescribe how individuals ought to live their lives. Their exercise may require either resources or structural change. However, Barclay is concerned that capability theory as thus understood may not deliver remedies in a manner that adequately reflects dignity as equal status. The core problem is that 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). By contrast, theories allocating standard packages of resources to everyone avoid commitments to accounts of the good human life—but at the cost of failing to meet the needs of many with disabilities. If resource theories give up the idea that each should get the same bundle of resources, however, they also must adopt a notion of well-being. Barclay concludes that “it is likely that the threat to the equal status of some people is ineliminable” (76).Although capability theory is preferable to resource-based approaches to the metric of justice, Barclay argues, it is incomplete. Some requirements of justice should not be construed as opportunities that people may decline to exercise, like the right to vote; rights to due process and rights to nondiscrimination are her examples. So, Barclay adds a minimalist account of rights into the mix of disability justice: “Human rights are instead best understood as specifying a limited subset of justice: the minimum that we expect every society to ensure for its members, irrespective of the differences between them” (83). In keeping with her minimalism, Barclay argues that the Convention on the Rights of Persons with Disabilities (CRPD) should be given an interpretation that avoids “rights inflation” (84) by insisting that accommodations for difference in the exercise of rights must be reasonable (89).Such a reasonable accommodation qualifier, however, brings us full circle to distributive requirements: what accommodations are reasonable? At this point, Barclay brings in her understanding of the requirements of equal status as at least a start to fill in gaps, noting first that “defenders of relational equality have offered very few concrete suggestions about the distributive requirements of a society where all enjoy equal status” (92). Among plausible intuitive suggestions, she calls on Elizabeth Anderson’s views about how severe inequality can “undermine the ideal of a society of equals” (92), along with arguments about how extreme economic and social deprivation can leave people vulnerable in many ways. Bringing in dignity, she concludes, “remind[s] us of the importance of preventing people from sliding into entrenched social inferiority, and that rights against discrimination are not sufficient to ensure this” (95).To summarize briefly, Barclay believes that for disability justice it is less important to focus on the who of disability than the what of disability disadvantage. Addressing the latter, she argues, requires considering when resources are needed, when changes in social structures are critical, and when protections of human rights must be invoked, all against and interpreted through a background of assuring equal status for all. Equal status is seen as a relational idea of how people stand with respect to one another. For some, equal status may not be possible if their impairments are such that what justice requires with respect to resource allocation, structural change, or rights protection will not enable them to enjoy fundamentally valuable aspects of life. Barclay’s emphasis on the what, rather than the who, of disability justice thus leads her to move theoretically from the requirements of justice to the individual, rather than from features of the individual to the requirements of justice. Nonetheless, the account circles back to the individual to the extent that some may not be able to enjoy equal status even when the requirements of justice are satisfied. It is here that her eclecticism arguably fails, as the examples of supported decision-making for people with cognitive disabilities and access to resources for health care may reveal.Persons with severe intellectual disabilities do present challenges for theories of disability justice. They often have concomitant physical disabilities and need resources for personal care, and some structural changes such as measures to address income inequality may not seem directly relevant to them. But Barclay’s efforts stop short of what should be possible from the perspective of disability justice. Consider here the insistence in Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) that 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 or powers of attorney for health care 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 simply 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 be able to possess whatever capacities are required for voting: “there are nonetheless some individuals who could never be brought to understand what voting is, how to do it, let alone be able to express their interests or will in doing so” (118). Then, she mounts a justification for extending the franchise to all with cognitive disabilities that, she says, is “without relying on empirically and normatively implausible claims that severe cognitive impairments make no difference to the capacity to vote” (115). Her justification then can only be 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 with Barclay’s, 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; indeed, as Barclay, Singer, McMahan, and others recognize, a purely interest-based approach would open the door to assigning similar moral status to people with cognitive disabilities and nonhuman animals. It is instead 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 in any way to cognize or express their views. The account would look more like what Barclay insists on in her final chapter about the importance of recognizing dignity in day-to-day interactions even with the most cognitively impaired. In this chapter, in objecting to such undignified treatment as hosing people down or leaving them in soiled diapers, she writes of the role of “culturally 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 “it 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 thinks that justice cannot reasonably require overly excessive resource expenditures on the disabled.The impact of this minimalism can be seen even more clearly in Barclay’s discussion of access to health care. The problem, as Barclay (and many others) sees it, is that the more complex health needs of people with disabilities may be very expensive. 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. 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