Linda Barclay

This article develops a detailed, empirically driven analysis of the nature of the transition costs incurred in becoming disabled. Our analysis of the complex nature of these costs supports the claim that it can be wrong to cause disability, even if disability is just one way of being different. We also argue that close attention to the nature of transition costs gives us reason to doubt that well-being, including transitory impacts on well-being, is the only thing that should determine the wrongness of causing or removing disability. Non-welfare considerations also defeat the claim that it is always wrong to cause disability. The upshot of these conclusions is that closer attention to the nature of transition costs supports disabled people who strenuously contest the assumption that their well-being is lower than nondisabled people. It also suggests that, in addition, disabled people should contest their opponents’ narrow account of how we should make ethical decisions regarding causing or failing to prevent disability.

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person’s digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients’ testimony and treatment preferences, which can be instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry.

Individuals with ‘severe’ cognitive disabilities are primarily discussed in philosophy and bioethics to determine their moral status. In this paper it is argued that theories of moral status have limited relevance to the unjust ways in which people with cognitive disabilities are routinely treated in the actual world, which largely concerns their relegation to an inferior social status. I discuss three possible relationships between moral and social status, demonstrating that determinate answers about the moral status of individuals with ‘severe’ cognitive disabilities are neither necessary nor sufficient for defending the imperative that they be treated as our social equals.

It has been argued by disability advocates that supported decision-making must replace surrogate, or substituted, decision-making for people with cognitive disabilities. From a moral perspective surrogate decision-making it is said to be an indefensible form of paternalism. At the heart of this argument against surrogate decision-making is the belief that such paternalistic action expresses something fundamentally disrespectful about those upon whom it is imposed: that they are inferior, deficient or child-like in some way. Contrary to this widespread belief, I will argue that surrogate decision-making sometimes expresses more respect for people with life-long, ‘severe’ or ‘profound’ cognitive disabilities than does the adoption of supported decision-making.. Specifically, I argue that in some cases supported decision-making can arguably express that people with severe or profound cognitive disabilities lack equal moral value. I also argue that supported decision-making for people with profound cognitive disabilities can arguably express that they lack complex and rich inner lives. If our aim is to ensure our behaviour and practices express respect for people with life-long ‘severe’ or ‘profound’ cognitive disabilities, then sometimes surrogate rather than supportive decision-making will be a better option.

Hojjat Soofi develops a modified version of Martha Nussbaum’s capability approach, which he offers as a conception of dignity for people living with dementia.1 He argues that this modified version can address what he identifies as four main criticisms of the concept of dignity. The first and most substantial criticism was developed by Macklin: that appeals to ‘dignity’ add little to moral debates or to the rich field of existing moral values.1 Soofi’s account of dignity does not evade this criticism: to the contrary, it represents another clear example of what Macklin complained about, namely, a moral proposal in which the concept of ‘dignity’ plays no substantive role. We have much to learn from Soofi’s rich account of how to ensure the flourishing or well-being of people living with dementia, but it has little to do with dignity as such. According to Soofi, Macklin’s argument is that ‘dignity’ is just another word for respect for persons or their autonomy. This is a rather truncated representation of Macklin’s argument, which is in fact broader. Her argument is that the concept of ‘dignity’ adds nothing to the vast array of rich moral values that already populate the field of ethics, mainly because it is a less precise restatement of these existing values.2 She explicitly …

Philosophical interest in disability is rapidly expanding. Philosophers are beginning to grasp the complexity of disability--as a category, with respect to well-being and as a marker of identity. However, 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.

The meaning of dignity in health care has been primarily explored using interviews and surveys with various patient groups, as well as with health care practitioners. Philosophical analysis of dignity is largely avoided, as the existing philosophical literature is complex, multifaceted and of unclear relevance to health care settings. The aim of this paper is to develop a straightforward philosophical concept of dignity which is then applied to existing qualitative research. In health care settings, a patient has dignity when he or she is able to live in accordance with his or her standards and values. Accordingly, health care practitioners respect a patient's dignity when they refrain from transgressing the patient's standards and values, or refrain from forcing the patient to transgress his or her standards and values. This concept is shown to explain and illuminate most of the key qualitative findings. It therefore provides a more coherent and synthesised concept of dignity in health care.

If it is so obvious that international participants should share in the spoils of research profits, why isn’t it equally obvious that participants who share nationality with the researchers should do so as well? I argue that if one believes that some form of benefit-sharing is morally obligatory in research conducted in developing countries, it is very hard to escape the conclusion that it should at least in some circumstances be thought equally obligatory in research conducted within the borders of developed countries. I show that untenable assumptions about solidarity and altruism within developed countries are relied upon to deny fair treatment to research participants in developed countries — treatment that would be considered exploitative if meted out to citizens in developing countries.

Theories of distributive justice are often criticised for either excluding people with disabilities from the domain of justice altogether, or casting them as deficient in personal attributes. I argue that the capabilities approach to justice is largely immune to these flaws. It has the conceptual resources to locate most of the causes of disadvantage in the interaction between a person and her environment and in doing so can characterise the disadvantages of disability in a way that avoids the imputation of natural deficiency. However, I also argue that the capabilities approach cannot accommodate some of the stronger claims advanced by some disability scholars. No plausible capabilities approach can guarantee that social change will always be the just or fair remedy for disadvantage, and there is a small number of severe cases of disability where capability shortfalls will be attributed to the person’s ‘deficient’ physical and mental impairments.

The gendered division of labor is the major cause of gender inequality with respect to the broad spectrum of resources, occupations, and roles. Although many feminists aspire to an equality of outcome where there are no significant patterns of gender difference across these dimensions, many have also argued that liberal theories of social justice do not have the conceptual tools to justify a direct attack on the gendered division of labor. Indeed, many critics argue that liberalism positively condones it, presuming that it arises from the free choices of individuals, which must be respected. In this paper I will accept the feminist goal of equality of outcome across roles, occupations, income, and wealth, but will argue that liberal theories of justice are consistent with strong measures aimed at promoting such equality. I will show that liberalism has the conceptual resources to justify a concrete policy measure that goes considerably beyond the measures usually championed by feminists. The example I focus on is “daddy quotas,” which refers to the tagging of a significant part of parental leave for the exclusive use of fathers

Distributive justice decision making tends to require a trade off between different valued outcomes. The present study tracked computer mouse cursor movements in a forced-choice paradigm to examine for tension between different parameters of distributive justice during the decision-making process. Participants chose between set meal distributions, to third parties, that maximised either equality (the evenness of the distribution) or efficiency (the total number of meals distributed). Across different formulations of these dilemmas, responding was consistent with the notion that individuals tend to base decisions in part on the magnitude of these parameters. In addition, dilemmas associated with inconsistent responding across the sample tended to elicit the greatest spatial deviation of the cursor, potentially reflecting dilemma difficulty. One interpretation of these results is that individuals value equality and efficiency in such a way that moral dilemmas are resolved by comparing the perceived value of these qualitatively different parameters, consistent with a value pluralistic framework of decision making. A post-hoc analysis indicated that individuals also incorporated sufficiency concerns during distributive justice decision making. The results are discussed in relation to political philosophy

Most democratic countries either limit or deny altogether voting rights for people with cognitive impairments or mental health conditions. Against this weight of legal and practical exclusion, disability advocacy and developments in international human rights law increasingly push in the direction of full voting rights for people with cognitive impairments. Particularly influential has been the adoption by the UN of the Convention on the Rights of Persons with Disabilities in 2007. Article 29 declares that states must ‘ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected’. This article also argues for the right of all people to vote, including people with cognitive impairments, by adopting a uniquely strategic approach. Firstly, some of the strategic limitations of existing arguments in favour of extending the franchise are highlighted. Most such arguments are flawed because they run the risk of inviting disparaging philosophical commentary which compares disabled people to animals, or because they are based on implausible empirical claims, or because they inadvertently tie the case for voting rights for the disabled to other cases unlikely to ever enjoy widespread acceptance. This article, instead, justifies extending voting rights to all people with cognitive impairments based on a simple cost-benefit analysis that avoids all of these problems

Martha Nussbaum has argued for the superiority of her capabilities approach over the language of human rights. In this article it is argued that the capabilities approach is incapable of justifying something crucially important expressed in international human rights law: the requirement that every government treat all people as having equal status. Nussbaum has recently grappled with the role of equality within her approach, but has failed to offer a satisfactory explanation of its importance. The reason is that the value and importance of equal status cannot be fully articulated in the language of capabilities alone. While most philosophical conceptions of human rights also fail to incorporate the importance of equal respect, the limitations of the capability approach are more serious. For the purposes of specifying the duties of governments, capabilities are not the only things that matter.

It may appear that there are grounds for an alliance between opponents of enhancement and disability advocates. People from both camps condemn parents who aspire to improve the physical and psychological traits their children would otherwise be born with, a condemnation often expressed as an accusation of eugenics. Despite these superficial appearances, the author will argue that disability advocates have nothing to applaud in Michael Sandel’s critique of enhancement, which is based on false and sometimes pernicious claims about the value of ‘normal’ human beings. However, they will also argue that disability advocates fail to provide convincing reasons for condemning parental decisions to avoid or eliminate certain traits their children would otherwise be born with. Contrary to what disability advocates and opponents of enhancement suggest, it is often a violation rather than an instantiation of parental virtue to abandon judgements about whether one’s children’s biological givens should be changed

It has been argued that dignity is a useless concept that adds nothing to existing moral vocabulary: it is just a slogan. In this chapter, it is argued that only a concept of dignity can adequately explain a serious moral wrong inflicted on people with disabilities, namely their relegation to inferior social status. Far from being useless, it uniquely explains why fundamental changes to social relations are needed to secure justice. Moreover, dignity matters just as much for people with cognitive impairments as it does for everyone else. As such, fraught debates about the moral standing of people with severe cognitive impairment are largely irrelevant to explaining why they, too, should be treated as social equals.

Recent discussions of genetic enhancement have argued that unregulated access to genetic enhancement technology will have a mainly negative impact on equality, a development that an egalitarian approach to distributive justice should be concerned with and seek to address. I argue that the extent to which egalitarians should be concerned about unequal access to genetic enhancement therapies has been overplayed. Many of the genetic differences that exist between people, including those that arise from differential access to genetic enhancement technology, are simply irrelevant to egalitarian concerns. I also argue that most commentators have failed to appreciate that an egalitarian-inspired program of equal access to genetic enhancement technology may not be altogether favourable for the genetically disadvantaged in any case. The true implications of egalitarian justice in the genetic future have not been adequately explored

Philosophers and bioethicists are typically sceptical about invocations of dignity in ethical debates. Many believe that dignity is essentially devoid of meaning: either a mere rhetorical gesture used in the absence of good argument or a faddish term for existing values like autonomy and respect. On the other hand, the patient experience of dignity is a substantial area of research in healthcare fields like nursing and palliative care. In this paper, it is argued that philosophers have much to learn from the concrete patient experiences described in healthcare literature. Dignity is conferred on people when they are treated as having equal status, something the sick and frail are often denied in healthcare settings. The importance of equal status as a unique value has been forcefully argued and widely recognised in political philosophy in the last 15 years. This paper brings medical ethics up to date with philosophical discussion about the value of equal status by developing an equal status conception of dignity.

Recent political philosophers have argued that criteria of social justice that defend distributing resources to individuals on the basis of the disadvantages of their natural endowments are disrespectful and disparaging. Clearly influenced by the social model of disability, Elizabeth Anderson and Thomas Pogge have recently defended criteria of social justice that distribute resources to people with disabilities on the basis of eliminating discrimination, not making up for so-called natural disadvantage. I argue that it is implausible to suggest that just entitlements for people with disability can be secured solely by eliminating discrimination. Resources for people with disabilities must sometimes be justified on the grounds that some natural endowments pose disadvantages even in societies that do not discriminate. I argue further that there need be nothing at all disrespectful about this way of explaining disadvantage; nor have proponents of the social model of disability or political philosophers provided any compelling reasons for supposing that it is disrespectful. There is thus no motivation for Anderson's and Pogge's attempts to secure justice for people with disabilities by appealing solely to the imperative to eliminate discrimination