The sub-title of a recent book on “belonging” for people with profound intellectual and multiple disabilities (PIMD) is “Pushing the boundaries of inclusion.” One aim of this paper is to establish where at least one of these boundaries lies. Enabling profoundly disabled people to be together with others is often inspired by the ideal that anybody and everybody can be fully included in their relationships with others. This inclusive ideal can take the form of relational equality—including people with PIMD (...) as equals in our relationships with them. I explore the scope and limits of relational equality, and where, as with some profoundly disabled people, equality is out of reach, I look at two relational alternatives. (shrink)

The sub-title of a recent book on “belonging” for people with profound intellectual and multiple disabilities (PIMD) is “Pushing the boundaries of inclusion.” One aim of this paper is to establish where at least one of these boundaries lies. Enabling profoundly disabled people to be together with others is often inspired by the ideal that anybody and everybody can be fully included in their relationships with others. This inclusive ideal can take the form of relational equality—including people with PIMD (...) as equals in our relationships with them. I explore the scope and limits of relational equality, and where, as with some profoundly disabled people, equality is out of reach, I look at two relational alternatives. (shrink)

The goal of inclusion is more or less credible depending in part on what it is that learners have in common. I discuss one characteristic that all learners are thought to share, although the learners I am concerned with represent an awkward case for the aspiration of inclusivity. Respect is thought of as something owed to all persons, and I defend the view that this includes persons with profound and multiple learning difficulties and disabilities. I also consider the implications (...) of respecting profoundly disabled learners for teaching and learning, and three aspects in particular: treating the profoundly disabled learner as a person; the close relationship between teaching and caring for a vulnerable learner; and individualised learning as an element of a successful teaching and learning environment. (shrink)

The goal of inclusion is more or less credible depending in part on what it is that learners have in common. I discuss one characteristic that all learners are thought to share, although the learners I am concerned with represent an awkward case for the aspiration of inclusivity. Respect is thought of as something owed to all persons, and I defend the view that this includes persons with profound and multiple learning difficulties and disabilities. I also consider the implications (...) of respecting profoundly disabled learners for teaching and learning, and three aspects in particular: treating the profoundly disabled learner as a person; the close relationship between teaching and caring for a vulnerable learner; and individualised learning as an element of a successful teaching and learning environment. (shrink)

Growing numbers of human beings live with profound and multiple learning difficulties and disabilities. Exploring the moral, social and political implications of this trend, Valuing Profoundly Disabled People addresses questions that are high on policy and practice agendas in numerous regions around the world, including the UK and the EU, the USA, and Australasia. In this important work Vorhaus examines fundamental moral and social questions about profound disability, and each chapter combines a comprehensive review of existing literature (...) with thought-provoking and original philosophical arguments. Vorhaus argues that there is a pressing need to consider the moral and political claims of people whose lives are characterised by extensive impairments, dependency and vulnerability. The book prompts readers to reflect on complex issues relating to the practices of caring, teaching and treating people with profound disabilities in contexts such as education, health care and social policy. Providing a much-needed contribution to the field, this book will be of interest to postgraduates, academics and researchers in a number of distinct and interrelated fields, including disability and impairment, human rights, philosophy, sociology, health and social policy, and education. The book will also be of great interest to practitioners and policymakers seeking to promote the aims of realising human potential and respecting disability. (shrink)

According to one prominent form of moral individualism, how an individual is to be treated is determined, not by considering her group membership, but by considering her own particular characteristics. On this view, so this paper argues, it is not possible to provide an account of why people with profound cognitive disabilities are owed respect. This conclusion is not new, but it has been challenged by writers who are sympathetic to the recommended emphasis. The paper aims to show that (...) the conclusion cannot be avoided, and to look at what is to be learned from an approach that leads us to this point. It suggests that any account of why profoundly disabled people are owed respect will have to supplement discussion of their particular capacities with a normative account of their humanity. (shrink)

In this paper I argue that reflection on competence and enfranchisement in relation to profound disability forces re-examination of the grounds of citizenship, with implications for theories of distributive justice in education. The primary purpose is less to point up that some people are disenfranchised without injustice; it is more to advance the view that, since enfranchisement is not an option for some profoundly disabled people, we require a conception of citizenship that is more sensitive to their distinctive (...) needs and interests. (shrink)

Martha Nussbaum has sought to establish the significance of disability for liberal theories of justice. She proposes that human dignity can serve as the basis of an entitlement to a set of capabilities that all human beings either possess or have the potential to develop. This article considers whether the concept of human dignity will serve as the justification for basic human capabilities in accounting for the demands of justice for people with profound learning difficulties and disabilities. It (...) examines the relationship between dignity and capabilities, suggesting that Nussbaum fails to distinguish between several conceptions of human dignity, whilst also identifying one of these conceptions as coming close to meeting several of her demands. It is difficult enough, however, to show how dignity is related to just one of our basic entitlements, and even that requires more than the resources available in Nussbaum's approach. (shrink)

One challenge to the concept of human dignity is that it is a rootless notion invoked simply to mask inequalities that inevitably exist between human beings. This privileging of humans is speciesist and its weak point is the profoundly disabled human being. This article argues that far from being a weak point, the profoundly disabled person is a source of strength and witness to the intrinsic dignity that all human beings have by virtue of being human. The disabled represent the (...) reality of human existence that is both strong and fragile. Although human dignity can be understood philosophically its depth is rooted in Christian theological insights. The profoundly disabled occupy a privileged position and share in a theology of mission since they testify to the interdependence of every human being and human dependence on God to a myopic world that only values strength, autonomy and independence. Content Type Journal Article Category Article Pages 185-203 DOI 10.1558/hrge.v17i2.185 Authors Pia Matthews, Theology, Philosophy, and History, St Mary’s University College, Waldegrave Road, Strawberry Hill, TW1 4SX Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 17 Journal Issue Volume 17, Number 2 / 2011. (shrink)

Metaphilosophy, Volume 53, Issue 1, Page 25-37, January 2022.

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently (...) impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population. (shrink)

In this relatively thin volume, Pia Matthews has managed a comprehensive and fluid covering of how discourse on personhood can shape new ethical commitments to individuals with profound disabilitie...

This article engages with debates concerning the moral worth of human beings with profound intellectual and multiple disabilities (PIMDs). Some argue that those with such disabilities are morally less valuable than so-called normal human beings, whereas others argue that all human beings have equal moral value and so each group of humans ought to be treated with equal concern. We will argue in favor of a reconciliatory view that takes points from opposing camps in the debates about the moral (...) worth of humans with PIMDs. The view in question, roughly, is this: most humans with PIMDs are persons in the morally significant sense and so deserve equal moral consideration to so-called normal human beings. Some humans with PIMD may not, however, be persons, but nevertheless deserve equal moral consideration to persons because they stand in a special relation to persons. (shrink)

Although almost completely ignored, Aquinas’s account of persons with severe intellectual disabilities is key to his understanding of human persons and their salvation. Aquinas extensively addresses questions of human impairment, and for Aquinas physical and mental impairment are not nearly as important as moral or spiritual impairment. Contrary to those who focus on Aquinas’s account of rationality and suppose he thinks that a person must exercise rationality in order to be moral and in the image of God, Aquinas’s view is (...) that persons with severe mental impairments have a distinct spiritual advantage, due to the impeccability of the gift of wisdom given them in their baptism. (shrink)

The formal justice model proposed by Anita Silvers in Disability, Discrimination, and Difference emphasizes the social model of disability and the need for full equality of opportunity, and it suggests that a distributive model of justice that gives special benefits to individuals with disabilities is self-defeating. Yet in that work, Silvers allows an exception for the "profoundly impaired." In this paper, I show how the formal justice theory falls short when it comes to defining and dealing with "profoundly (...) impaired" individuals and explore the ways in which making the exception raises serious theoretical concerns for the grounding of the formal justice model. (shrink)

This paper is about the moral status of those human beings with profound intellectual disabilities (PIDs). We hold the common sense view that they have equal status to ‘normal’ human beings, and a higher status than any non-human animal. We start with an admission, however: we don’t know how to give a fully satisfying theoretical account of the grounds of moral status that explains this view. And in fact, not only do we not know how to give such an (...) account, but the most satisfying account of moral status that we know (which we call ‘the standard account’) entails that our view is false. It entails that those with PIDs have a lower status than ordinary human beings and an equal status to non-human animals. Now, in this paper, we do absolutely nothing to try to show where the standard account goes wrong, and we do absolutely nothing to resolve the difficulties we see in developing an alternative account that supports our view. Indeed, we do not give any argument against the standard account or in favour of our own view. Instead, we raise the following question: in order to be justified in continuing to hold our view, are we obliged to give such an account? Our answer will be that we are not. (shrink)

Some prominent contemporary ethicists, including Peter Singer and Jeff McMahan, do not consider human beings with profound intellectual disabilities to have the same moral status as “normal” people. They hold that individuals who lack sufficiently sophisticated cognitive abilities have the same moral value as nonhuman animals with similar cognitive capacities, such as pigs or dogs. Their goal—to elevate the moral standing of sentient nonhuman animals—is an admirable one which I share. I argue, however, that their strategy does not, in (...) fact, achieve this goal and that there are better ways to advance it than to attach lesser value to the lives of profoundly intellectually disabled persons. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that (...) values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

Many accounts of the grounds for human moral standing rely on the possession of higher-order capacities of mind that serve as status-conferring attributes, to the exclusion of those with significant intellectual impairments. Interconnectedly, our relationships with those with profound intellectual disability (PID) remain beneath their potential. Taking as a starting point Peter Singer’s graduated account of moral status, its assumptions about PID, and its implications for what we owe those with PID, I argue that rather than conceptualizing PIDs (...) as severe cognitive deficit, we should characterize them as disabilities marked by the impossibility of successful, mutual linguistic communication. Considering existing relationships between non-PID and PID pairs, I center the potential for atypical forms of communication. I close with the beginnings of a more extensionally adequate grounds for moral status, where moral standing is a product of one’s being able to participate in the shared activity of developing and deepening relationships. (shrink)

Many accounts of the grounds for human moral standing rely on the possession of higher-order capacities of mind that serve as status-conferring attributes, to the exclusion of those with significant intellectual impairments. Interconnectedly, our relationships with those with profound intellectual disability (PID) remain beneath their potential. Taking as a starting point Peter Singer’s graduated account of moral status, its assumptions about PID, and its implications for what we owe those with PID, I argue that rather than conceptualizing PIDs (...) as severe cognitive deficit, we should characterize them as disabilities marked by the impossibility of successful, mutual linguistic communication. Considering existing relationships between non-PID and PID pairs, I center the potential for atypical forms of communication. I close with the beginnings of a more extensionally adequate grounds for moral status, where moral standing is a product of one’s being able to participate in the shared activity of developing and deepening relationships. (shrink)

Deliberative democracy harbors a recurrent tension between full inclusion and intelligible speech. People with profound cognitive disabilities often signify this tension. While liberal deliberative theorists sacrifice inclusion for intelligibility, this exclusion is unnecessary. Instead, by analyzing deliberative locations that already include people with disabilities, I offer two ways to revise deliberative norms. First, the physical presence of disabled bodies expands the value of publicity in deliberative democracy, demonstrating that the publicity of bodies provokes new conversations similar to rational speech (...) acts. Second, the inclusion of people with profound disabilities necessitates a form of collaborative speech in which individuals make claims collaboratively. Habermas offers an ideal site to pursue this analysis because he recognizes the theoretical tension between inclusion and intelligibility and because his personal testimony reveals important insight into the lived experience of disability. (shrink)

Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that (...) moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. (shrink)

The use of growth attenuation therapy (GAT) is becoming more common in order to enable a family to care for a child with profound cognitive and physical disabilities (PCPD) as they age into adulthood. The first published study on the use of GAT was done with the family of a six-year-old girl with PCPD by Daniel Gunther and Douglas Diekema in Pediatrics in 2006. The ethical application of GAT generated considerable discussion on the use among children with PCPD in (...) the medical and ethics communities. This paper discusses the use of GAT for children with profound cognitive and physical disabilities from a Catholic bioethics perspective. (shrink)

Caregivers should usually accede to parents’ requests for life-sustaining treatment. For such decision-making, the best interests standard is too limited. John Arras’s “relational potential standard,” con-joined to a contemporary care ethics framework, provides a better guide.

The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley’s rights, including a right to an intact, unaltered body, or on Ashley’s parents’ rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, (...) however, that caregiving is a central issue in the controversy, as Ashley’s need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called “holding.” We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family’s contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family “holding” for Ashley. (shrink)

In a recent paper we argued that a Moorean strategy can be employed to justify our continuing to believe the following proposition, even in the presence of philosophical views that entail it is false, without any philosophical argument against those views, and without any positive philosophical argument in its favour: -/- H>A: Humans have an equal moral status that is higher than the moral status of non-human animals. -/- The basic idea is that our confidence in the truth of this (...) proposition is greater than our confidence in the propositions that make up those philosophical views that entail it is false, and that this is sufficient to justify rejecting those views and to continue to believe H>A. -/- Roberts has recently responded to our argument by claiming: -/- (i) Although the Moorean strategy is valid, it is not powerful. (ii) A resort to the Moorean strategy reflects too great a pessimism about the accounts available that purport to justify H>A. -/- In this short rejoinder we explain why Roberts fails to establish his two claims. (shrink)

With the improvements in medical care and resultant increase in life expectancy of the intellectually disabled, it will become more common for healthcare providers to be confronted by ethical dilemmas in the care of this patient population. Many of the dilemmas will focus on what is in the best interest of patients who have never been able to express their wishes with regard to medical and end-of-life care and who should be empowered to exercise surrogate medical decision-making authority on their (...) behalf. A case is presented that exemplifies the ethical and legal tensions surrounding surrogate medical decision making for acutely ill, never-competent, profoundly intellectually disabled patients. (shrink)

Drawing on the author’s experience carrying out qualitative research in the field of occupational therapy with people with intellectual disabilities, this article explores ethical issues inherent in ethnographic and case study research, where study designs can evolve over time. Such qualitative methodologies can enable deep understanding of research topics, but detailed description of methods and of the range of potential experiences participants may have is necessary to ensure that they are fully informed and ethics committees satisfied. Thorough consideration is required (...) of ethical issues related to topic relevance and design, recruitment, collection of data and portrayal of participants in the eventual case report. The article illustrates a way in which research of this type can be explained and justified, including how recruitment can be achieved of participants likely to lack capacity to consent to participation themselves. (shrink)

What does dependency reveal about human learning? All humans are dependent, largely because we are variously vulnerable and disabled at more than one stage in our lives. In this paper the subject of dependency is approached largely in the context of our vulnerable and disabled states, including in particular, states of profound disability. The primary contention is that our dependent states should feature in accounts of how we learn, and of relations between learner and teacher, in ways that (...) compare with the attention given to personal autonomy and independence. (shrink)

What does dependency reveal about human learning? All humans are dependent, largely because we are variously vulnerable and disabled at more than one stage in our lives. In this paper the subject of dependency is approached largely in the context of our vulnerable and disabled states, including in particular, states of profound disability. The primary contention is that our dependent states should feature in accounts of how we learn, and of relations between learner and teacher, in ways that (...) compare with the attention given to personal autonomy and independence. (shrink)

There is a view that what we owe to other people is explained by the fact that they are human beings who share in a common human life. There are many ways of construing this explanatory idea, and I explore a few of these here; the aim is to look for constructions that contribute to an understanding of what we owe to people with profound and multiple learning difficulties and disabilities. In exploring the idea of sharing in a common (...) life I construe ‘sharing’ as ‘participating in’, and ‘common life’ as the social life characteristic of the environment that someone lives in. My principal purpose is to render the idea of sharing in a common life in terms that help explain its eligibility as a ground for establishing the moral status of people with PMLD. The participatory options I examine each make some call on agency, if only as something hoped for in the future, including when hope flies in the face of expectation. Accordingly I look at conceptions of actual and potential participation in social life, and at the idea of treating people as if they have the potential to participate, even when the existence of any such potential is unlikely. I conclude with some thoughts on the relation between participation and the moral status of profoundly disabled people, and about how much, and how little, the argument has achieved. (shrink)

People with disabilities (PWD) comprise a significant part of the population yet experience some of the most profound health disparities. Among the greatest barriers to quality care are inadequate health professions education related to caring for PWD. Drawing upon the expertise of health professions educators in medicine, public health, nursing, social work, and physician assistant programs, this forum showcases innovative methods for teaching core disability skills and concepts grounded in disability studies and the health humanities. Each of (...) the essays offers practical guidance for developing curricular interventions appropriate for students at various levels of training and familiarity with disability to be implemented in classroom discussions, case-based learning, lectures, panels, and clinical simulations across the full spectrum of pre-health and health professions education. (shrink)

Robert Veatch’s The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality delves into deep questions of justice through the case of a child with disabilities. I describe what is basically right about this vision, as well as what is problematic from the standpoint of contemporary disability bioethics. From there, I dive into the notion of vulnerability that is at play in his work. He describes disability as necessarily a condition of weakness, (...) lesser-than existence, and neediness. When disability is viewed in this way as an inherently vulnerable state of being, the essential sociopolitical dimensions of disability receive inadequate attention, which, in turn, makes it impossible to identify injustices correctly. I connect these points to concrete challenges faced by disability communities during the COVID-19 pandemic, which have raised profound questions about the just use of scarce critical care resources. Any case drawn from the pandemic is a very different kind of case than that of the child in Veatch’s book, but a commonality is the question of who should get what limited resources when needs and urgency vary. (shrink)

The London‐based Oily Cart theatre company aims to produce shows that are suitable forallyoung people. This paper closely examines one of their productions,Splish Splash, which was developed for children with profound and multiple learning difficulties. The paper's central purpose is to understand the value of this type of theatrical experience for these children. It argues that Winnicott's conception of play, and his account of the conditions that enable the capacity for play to unfold, provide a persuasive theoretical framework that (...) makes sense of Oily Cart's achievement. Winnicott's framework can integrate the views expressed (in interviews) by adults who were involved with or observed the show; arguably it is also corroborated by more recent infant research. (shrink)

We are very grateful to the commentators for taking the time to respond to our little article, ‘What Makes Killing Wrong?’ They raise many points, so we cannot respond to them all, but we do want to head off a few misinterpretations.Our critics in this journal avoid one careless misinterpretation, but less informed readers have pressed this misinterpretation in popular venues, so we need to start by renouncing it. We do not deny that killing humans is morally wrong. To the (...) contrary, we argue that killing humans is almost always morally wrong, because killing humans is almost always disabling, and disabling is morally wrong. Here we do not disagree with common sense. We also do not deny that killing partially or even profoundly disabled humans is morally wrong. People who are disabled in some ways still retain many other valuable abilities. This should be obvious. To kill a person with some disabilities but many other valuable abilities is to disable that person, so that is morally wrong. Here again we do not disagree with common sense. The one and only surprising application of our theory is to humans who are alive but totally disabled. We argue that, apart from special circumstances, it is not morally wrong to kill live humans who are totally disabled, whereas many people think that it would be morally wrong to kill even in these extreme and unusual cases, because they assume that killing is morally wrong for reasons apart from disabling.What could those reasons be? DeGrazia mentions three possibilities. First, ‘the harm of killing —in those ordinary cases in …. (shrink)

Disability dance lays claim to the provocative possibilities of the disabled body, raising profound questions about the politics of art, affect, and embodiment. For scholars of religion, disability dance is a powerful—and as yet unrecognized—site for probing the sacrality and ethics enacted in disability culture. This article brings the biblical tale of Jacob and the angel into conversation with a contemporary performance, “The Way You Look (at me) Tonight,” an intimate duet between choreographer and performer Jess (...) Curtis and Clare Cunningham, an internationally acclaimed dancer who explores the artistry of lived disability experience. Using dance as a hermeneutic invitation to draw out ethical insights into risk, consent, and intimacy, I offer a disability-sensitive reading of Genesis 32—reading the angel as a body whose presence attests to the brilliant shock of disability difference and probing the psychic and somatic transformation that unfolds when Jacob comes into kinesthetic contact with disability and the sacred. (shrink)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts. We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by (...) loss of mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (shrink)

This chapter is devoted to reflecting on the role of empathy in interactions with people with profound intellectual disabilities. We have a duty to respect people with intellectual disabilities. Respect involves identification with a point of view. We owe them an effort at identification with their perspective. However, if intellectually disabled people’s communicative abilities are impaired, our apprehension of their point of view might be limited, reducing our ability to identify with them and respect them. To answer this challenge, (...) I appeal to empathy. Through imaginative empathy, we can learn to identify with their perspectives. I argue that empathy is a good moral guide and can be helpful in developing respectful attitudes toward people with profound intellectual disabilities. (shrink)

Should people with exceptionally profound disabilities be given an equal chance of surviving a pandemic, even when their care might require a greater use of limited medical resources? How might an ethics of care be used to shape a policy regarding these patients?

Disability raises profound and fundamental issues: questions about human embodiment and well-being; dignity, respect, justice and equality; personal and social identity. It raises pressing questions for educational, health, reproductive, and technology policy, and confronts the scope and direction of the human and civil rights movements. Yet it is only recently that disability has become the subject of the sustained and rigorous philosophical inquiry that it deserves. The Oxford Handbook of Philosophy and Disability is the first comprehensive (...) volume on the subject. The volume's contents range from debates over the definition of disability to the challenges posed by disability for justice and dignity; from the relevance of disability for respect, other interpersonal attitudes, and intimate relationships to its significance for health policy, biotechnology, and human enhancement; from the ways that disability scholarship can enrich moral and political philosophy, to the importance of physical and intellectual disabilities for the philosophy of mind and action. The contributions reflect the variety of areas of expertise, intellectual orientations, and personal backgrounds of their authors. Some are founding philosophers of disability; others are promising new scholars; still others are leading philosophers from other areas writing on disability for the first time. Many have disabilities themselves. This volume boldly explores neglected issues, offers fresh perspectives on familiar ones, and ultimately expands philosophy's boundaries. More than merely presenting an overview of existing work, this Handbook will chart the growth and direction of a vital and burgeoning field for years to come. (shrink)