ABSTRACT Amartya Sen’s capability approach is often used in disability research as a normative framework for describing and evaluating the well-being of people with disabilities. Nevertheless, recently, the possibility of going beyond description to the use of the capability approach as an explanatory tool has been raised. However, to allow the use of the capability approach in this way requires grounding it in an appropriate research paradigm. In this paper, critical realism is adopted for this purpose. It is argued that (...) critical realism can provide the ontology needed to justify finding explanations for the way that people with disabilities achieve their valued capabilities. The assumption here is that there are real, emergent structures and mechanisms that underlie empirical capabilities; and that these structures and mechanisms are related to people’s agency, as described by critical realism’s conception of the relationship between structure and agency. (shrink)

Liberalism welcomes diversity in substantive ideas of the good but not in the process whereby these ideas are formed. Ideas of the good acquire weight on the presumption that each is a person's own, formed independently. But people differ in their capacities to conceptualize. Some, appropriately characterized as cerebral, are proficient in and profoundly involved with conceptualizing. Others, labeled cognitively disabled, range from individuals with mild limitations to those so unable to express themselves that we cannot be sure whether their (...) behavior is mediated by concepts at all. Constricted cognitive capacities have been thought to prevent participation in the prescribed process for forming personalized ideas of the good. So liberal theory, when formulating principles and practices of justice, often disregards cognitively disabled peoples' perspectives. We put aside metaphysically driven notions about personhood and show how interpersonal processes of “prosthetic” thinking (different from surrogacy) can satisfy liberalism's standards, positioning cognitively disabled individuals as fully participating subjects of justice. (shrink)

Health care insurance schemes, whether private or public, are notoriously unaccommodating to individuals with disabilities. While most nonelderly nondisabled persons in the U.S. are insured through private sources, coverage sources for nonelderly persons with disabilities have traditionally been a mix of private and public coverage. For all age groups, the employment-to-population ratio is much lower for persons with a disability than for those with no disability. Moreover, employed persons with a disability were more likely to be self-employed than those with (...) no disability. As a group, therefore, nonelderly people with disabilities have not been as well positioned as others to obtain private health care insurance because in the U.S., acquiring such coverage usually is employer based. (shrink)

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. (...) We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a person's (...) decision‐making capacity. In this article, we array various approaches to decision‐making along a continuum of interdependence. An appreciation of this continuum can empower patients and elucidate ethical challenges that arise when people transition between different kinds of interdependence across the life span. (shrink)

Given that many people with disabilities have been excluded from political deliberation and subjected to infantilizing and degrading treatment from others, many members of the disability rights movement are understandably critical of policies and practices that speak on behalf of people with disabilities and presume to know what is really in their best interest. Yet, this analysis argues that a general principle of anti-paternalism is not desirable for disability politics. In particular, people with cognitive disabilities are sometimes unable to make (...) important decisions by themselves, and may require assistance from family members or more cognitively able and verbally fluent citizens to make their political voices and choices heard. Drawing from John Locke and Alasdair MacIntyre, this article reconsiders the relationship between paternalism and autonomy, suggesting that autonomous decisionmaking and expression are best thought of as collaborative processes undertaken between people with a range of capacities. (shrink)

Verbunden mit dem drohenden Verlust von kognitiven Kapazitäten und der Veränderung der eigenen Persönlichkeit, ist zu vermuten, dass bei Demenzerkrankungen ein Sinnverlust vom Erkrankten befürchtet wird. Es ist Aufgabe dieses Papers aufzuklären, was es mit einer solch meist diffus empfundenen Angst auf sich hat. Dazu wird ein Deutungsangebot gemacht, das auf die Sinnkonzeption Susan Wolfs zurückgreift. Es wird gezeigt, dass es möglich ist, bis zu einem gewissen Grad der Demenz ein sinnvolles Leben zu führen – ein Leben, bei dem subjektiv (...) Anziehendes und rational Wertvolles zusammengreifen müssen. Dies ist möglich, weil ein Mensch mit Demenz noch über entsprechende Fähigkeiten der Wertschätzung verfügt und eine Hilfsbedürftigkeit der Befähigung zu einem sinnvollen Leben nicht widerspricht. Bei einer sehr schweren Beeinträchtigung der kognitiven Kapazitäten wird es hingegen nicht mehr möglich sein, ein solches Leben zu leben; die solcherart erkrankte Person wird dies aber auch nicht mehr vermissen. Wenn das, was man mit der Demenzerkrankung zu verlieren befürchtet, durch das Sinnverständnis Wolfs getroffen ist, dann sollte man diese Überlegungen bei der Beurteilung einer empfundenen Angst berücksichtigen. (shrink)

Historically, philosophers have had little to say about justice and disability. However, in recent years and in response to disability rights movements, philosophers have started to consider the claims to justice of persons with mental and physical impairments. Importantly, some have charged that without extensive revision, social contract accounts of justice – which enjoy immense popularity among political philosophers – cannot address the needs and interests of persons with disabilities. In this article, I explain why social contract accounts are thought (...) to flounder when it comes to justice for persons with disabilities. Then I assess the merits of recent attempts to construct theories of justice inclusive of persons with disabilities. In particular, I consider Nussbaum’s capabilities approach, Kittay’s justice as caring, and various restatements of the social contract. (shrink)

Peterson, Karlawish and Largent offer a defense of supported decision making in health care for people with dynamic and diminishing capacity. They are to be warmly commended for bringing sup...

Given the explanatory stalemate between ‘embedded’ (EMB) and ‘extended’ (EXT) cognition, various authors have proposed normative and moral arguments in favour of EXT. According to what we call the “extended cognition moral narrative” (EXT-MN) (Cassinadri, 2022), we should embrace EXT and dismiss EMB, because the former leads to morally preferable consequences with respect to the latter. In this article we argue that two arguments following the EXT moral narrative are flawed. In Sect. 2.1 and 2.2, we present respectively King (2016) (...) and Vold’s (2018) ‘argument from assessment of capacities’ (AAC) and Clowes (2013), Farina and Lavazza’s (2022a) ‘cognitive diminishment argument’ (CDA). The AAC states that we should embrace EXT over EMB since the former is better at attributing cognitive credit to individuals with learning disabilities who use assistive tools to complete their learning tasks, thus avoiding their marginalisation. The CDA states that EMB implies a morally undesirable picture of the agent in terms of cognitive diminishment. In Sect. 3, we clarify and criticise the underlying assumptions of the AAC and CDA: the “cognitive credit assumption”, the “marginalisation assumption” and, more generally, an ableist conception of disabled agency. In Sect. 3.1, we discuss the role of moto-perceptual skills and metacognitive credit involved in complex cases of tool-use, to demonstrate that the EXT-MN is uninformative in addressing these cases. To conclude, in Sect. 4 we argue that AAC and CDA fail to present EXT as descriptively and normatively superior to EMB. (shrink)

The literature on epistemic injustice currently displays a logocentric or propositional bias that excludes people with intellectual disabilities from the scope of epistemic agency and the demands of epistemic justice. This paper develops an account of epistemic agency and injustice that is inclusive of both people with and people without intellectual disabilities. I begin by specifying the hitherto undertheorized notion of epistemic agency. I develop a broader, pluralist account of epistemic agency, which relies on a conception of knowledge that accounts (...) not only for propositional knowing, but also for other types of knowing that have been largely neglected in debates on epistemic injustice and agency. Based on this pluralist account of epistemic agency, I then show that people with intellectual disabilities qualify as epistemic agents and therefore as subjects of epistemic justice. Finally, I argue that this pluralist account of epistemic agency pushes us to revisit the current conception of epistemic injustice and to expand its taxonomy in two important ways. (shrink)

Severe brain injury is a leading cause of death and disability. Following severe brain injury diagnosis is difficult and errors frequently occur. Recent findings in clinical neuroscience may offer a solution. Neuroimaging has been used to detect preserved cognitive function and awareness in some patients clinically diagnosed as being in a vegetative state. Remarkably, neuroimaging has also been used to communicate with some vegetative patients through a series of yes/no questions. Some have speculated that, one day, this method may allow (...) severely brain-injured patients to make medical decisions. Yet, skepticism is rife, due in part to the inherent difficulty of assessing decision-making capacity through neuroimaging communication. In this thesis, I provide the first systematic analysis of this problem. I present and defend a strategy for assessing decision-making capacity in brain-injured patients who can only communicate through neuroimaging. (shrink)