Disability and Well-Being

Medical technologies and assistive devices such as ventilators and power wheelchairs are designed to sustain life and/or improve functionality but they can also contribute to stigmatization and social exclusion. In this paper, drawing from a study of ten men with Duchenne muscular dystrophy, we explore the complex social processes that mediate the lives of persons who are dependent on multiple medical and assistive technologies. In doing so we consider the embodied and emplaced nature of disability and how life is lived (...) through bodies coupled with technologies and experienced as 'techno-body-subjects in situ'. Normative implications for theory and research, including bioethics research, are discussed. (shrink)

This article proposes a novel strategy, one that draws on insights from antidiscrimination law, for addressing a persistent challenge in medical ethics and the philosophy of disability: whether health systems can consider quality of life without unjustly discriminating against individuals with disabilities. It argues that rather than uniformly considering or ignoring quality of life, health systems should take a more nuanced approach. Under the article's proposal, health systems should treat cases where quality of life suffers because of disability-focused exclusion or (...) injustice differently from cases where lower quality of life results from laws of nature, resource scarcity, or appropriate tradeoffs. Decisionmakers should ignore quality-of-life losses that result from injustice or exclusion when ignoring them would improve the prospects of individuals with disabilities; in contrast, they should consider quality-of-life losses that are unavoidable or stem from resource scarcity or permissible tradeoffs. On this proposal, while health systems should not amplify existing injustice against individuals with disabilities, they are not required to altogether ignore the potential effects of disability on quality of life. (shrink)

What is it for something to be a disability? Elizabeth Barnes, focusing on physical disabilities, argues that disability is a social category. It depends on the rules undergirding the judgements of the disability rights movement. Barnes’ account may strike many as implausible. I articulate the unease, in the form of three worries about Barnes’ account. It does not fully explain why the disability rights movement is constituted in such a way that it only picks out paradigmatic disability traits, nor why (...) only the traits identified by the movement as constituting experiences of social and political constraint count as disability. It also leaves out the contribution of people other than disability activists, to the definition of disability. I develop Barnes’ account. On my account, a person is disabled if she is in some state which is constitutive of some constraint on her legitimate interests. This state must be the subject of legitimate medical interest and be picked out by the disability rights movement as among the traits for which they are seeking to promote progress and change. My account addresses the worries about Barnes’ account. It is also able to include all disabilities, rather than only physical ones. (shrink)

One of the central claims of the neurodiversity movement is that society should accommodate the needs of autistics, rather than try to treat autism. People have variously tried to reject this accommodation thesis as applicable to all autistics. One instance is Pier Jaarsma and Stellan Welin, who argue that the thesis should apply to some but not all autistics. They do so via separating autistics into high- and low-functioning, on the basis of IQ and social effectiveness or functionings. I reject (...) their grounds for separating autistics. IQ is an irrelevant basis for separating autistics. Charitably rendering it as referring to more general capacities still leaves us mistaken about the roles they play in supporting the accommodation thesis. The appeal to social effectiveness or functionings relies on standards that are inapplicable to autistics, and which risks being deaf to the point of their claims. I then consider if their remaining argument concerning autistic culture may succeed independently of the line they draw. I argue that construing autistics' claims as beginning from culture mistakes their status, and may even detract from their aims. Via my discussion of Jaarsma and Welin, I hope to point to why the more general strategy of separating autistics, in response to the accommodation thesis, does not fully succeed. Finally, I sketch some directions for future discussions, arguing that we should instead shift our attention to consider another set of questions concerning the costs and extent of change required to accommodate all autistics. (shrink)

In this essay I ask what educational justice might require for children with autism in educational settings where “inclusion” entails not only meaningful access, but also where the educational setting is able to facilitate a sense of belonging and further is conducive to well-being. I argue when we attempt to answer the question “do inclusion policies deliver educational justice?” that we pay close attention to the specific dimensions of well-being for children with autism. Whatever the specifics of individual cases, both (...) an attitude and policy of inclusion must permit parents to choose pragmatic alternatives, i.e., different learning environments, if educational justice is to remain the overriding goal. (shrink)

Historically, frameworks impoverished by the omission of disabled people's own standpoints have supported systems and practices that patronize and thereby further oppress disabled people, even while intended to serve their supposed good.Philosophers and psychologists often omit disabled people's concerns and experiences, even when disabled people are in a position of epistemic privilege in regard to the topic under consideration. While numerous recent empirical studies do include the reports of disabled people—regarding their quality of life, for example—there is still much that (...) remains to be known about the ways that particular bodily conditions impact lived experience (Albrecht and... (shrink)

This book is devoted to applied ethics. We focus on six popular and controversial topics: abortion, the environment, animals, poverty, punishment, and disability. We cover three chapters per topic, and each chapter is devoted to a famous or influential argument on the topic. After we present an influential argument, we then consider objections to the argument, and replies to the objections. The book is impartial, and set up in order to equip the reader to make up her own mind about (...) the controversial topics covered. (shrink)

This paper explores the relationship between disability and quality of life and some of its implications for bioethics and healthcare. It focuses on the neglected perfectionist approach that ties well-being to the flourishing of human nature, which provides the strongest support for the common view of disability as a harm. After critiquing the traditional Aristotelian version of perfectionism, which excludes the disabled from flourishing by prioritizing rationalistic goods, I defend a new version that prioritizes the social capacities of human nature (...) and the goods of personal relationship. This relationship-centered perfectionism is able to accommodate and explain disabled thriving. I also show how these issues have important implications for specific bioethical debates and clinical practices, using a cluster of issues related to Down syndrome as timely illustrations. My goal is to sketch a perfectionist theory that gives a more plausible account of the relationship between disability and well-being, and that provides better practical guidance in cases involving judgments about the quality of disabled lives. (shrink)

This chapter is about personhood in relation to ethics and to conciliar Christian theology, and how concepts of personhood may discriminate against profoundly cognitively disabled human beings. (By ‘conciliar Christian theology’ I mean the Christian theology that is articulated in, or endorsed by, the first seven ecumenical councils.) -/- I believe we can learn several things about personhood by looking at these two topics together. By examining ancient and medieval concepts of personhood and some modern conceptions of personhood we gain (...) a better grasp of the variety of concepts and what substantive work they were intended to do. By becoming familiar with (part of) the history of concepts of personhood we are better situated to appreciate and judge the theoretical work that these concepts were intended to do and what consequences they have in ethical and theological theorizing. -/- In the first section I tell a select history of moral philosophers theorizing about personhood and discuss these in relation to human beings with profound cognitive disability. I focus on John Locke, Immanuel Kant, and Mary Anne Warren. In the “When Personhood Is Discriminatory” section I argue that concepts of personhood, especially modern concepts of personhood, are typically used in a manner that discriminates against human beings with profound cognitive disabilities. I give two arguments against discriminatory uses of personhood, the Moral Shift Argument and the Argument against Exclusive Personhood. Although the Moral Shift Argument is deductively valid, it probably has little persuasive power over those who do not share the moral belief that profoundly cognitively disabled human beings are equal members of the moral community. However, the Argument against Exclusive Personhood has more argumentative force because it denies the claims that personhood is “self-evident” and that it is “obvious” to everyone. In the following section I survey a select history of concepts of personhood in order to establish the claims that concepts of personhood are not self-evident and are not obvious to everyone. This history of personhood goes back to ancient and medieval Christian theorizing and debating about personhood. It shows that concepts of personhood are not “self-evident” but rather are theoretical posits that are posited in theory construction in order to explain certain putative theological facts. Given that personhood is a theoretical posit and is not “self-evident,” moral philosophers who aim to determine the extent of the moral community on the basis of a supposedly “self-evident” concept of personhood are not justified in doing so. Moreover, given the Argument against Exclusive Personhood, philosophical theologians who wish to articulate models of the Trinity or Incarnation that are consistent with the seven ecumenical councils will find that they, like moral philosophers, are not justified to assume, or to insist on, modern personhood for their models of the Trinity or Incarnation. My overall conclusion, then, is that modern personhood is bad for ethics and unnecessary for conciliar ecumenical Christian theology. (shrink)

Few subjects have generated so many newspaper headlines and such heated controversy as the treatment, or non-treatment, of handicapped newborns. In 1982, the case of Baby Doe, a child born with Down's syndrome, stirred up a national debate in the United States, while in Britain a year earlier, Dr. Leonard Arthur stood trial for his decision to allow a baby with Down's syndrome to die. Government intervention and these recent legal battles accentuate the need for a reassessment of the complex (...) issues involved. This volume--by two authorities on medical ethics--presents a philosophical analysis of the subject based on particular case studies. Addressing the doctrine of the absolute sanctity of life, Singer and Kuhse examine some actual cases where decisions have been reached; consider the criteria for making these decisions; investigate the differences between killing and letting die; compare Western attitudes and practices with those of other cultures; and conclude by proposing a decision-making framework that offers a rational alternative to the polemics and confusion generated by this highly controversial topic. (shrink)

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader (...) implications for just and equitable healthcare delivery. (shrink)

If we were to write down all those things that we ordinarily categorise as disabilities, the resulting list might appear to be extremely heterogeneous. What do disabilities have in common? In this paper I defend the view that disabilities should be understood as particular kinds of inability. I show how we should formulate this view, and in the process defend the view from various objections. For example, I show how the view can allow that common kinds of inability are not (...) disabilities, can allow that minor kinds of inability are rightly not described as disabilities, and can allow that socially imposed inabilities need not be disabilities. In the second half of the paper, I show that this theory is superior to rival theories. I criticize the wellbeing theory of disability (Kahane and Savulescu 2009, Savulescu and Kahane 2011, Harris 2001) and conventionalist theories of disability (e.g. Barnes 2016). Finally, I show how the inability theory is consistent with the best versions of the social model of disability. (shrink)

ABSTRACT: In his A Conceptual Investigation of Justice, Kyle Johannsen suggests a theory of disability that holds that to have a disability just is to be worse off, sometimes referred to as the ‘medical’ or ‘individual’ model of disability. I argue that Johannsen’s understanding of disability might force some of his key claims into an uncomfortable position. In particular, for his theory to avoid the thrust of Elizabeth Anderson’s criticisms of luck egalitarianism, the assumption of the medical model of disability (...) must be dropped, but this comes at the cost of his criticism of John Rawls’ difference principle. -/- RÉSUMÉ : Dans son livre, A Conceptual Investigation of Justice, Kyle Johannsen semble invoquer une théorie du handicap selon laquelle le fait d’avoir un handicap, c’est être pire qu’une autre personne, un modèle parfois appelé le modèle de handicap «médical» ou «individuel». Je soutiens que la compréhension de Johannsen en matière d’invalidité peut mettre sa theorie dans une position difficile. En particulier, pour que sa théorie évite les critiques d’Elizabeth Anderson sur l’égalitarisme de la chance, l’hypothèse du modèle médical du handicap doit être abandonnée. Cependant, cela se fait au détriment de la critique du principe de différence de John Rawls formulée par Johannsen. (shrink)

This entry discusses the relationship between disability and well‐being. Disabilities are commonly thought to be unfortunate, but whether this is true is unclear, and, if it is true, it is unclear why it is true. The entry first explains the disability paradox, which is the apparent discrepancy between the level of well‐being that disabled people self‐report, and the level of well‐being that nondisabled people predict disabled people to have. It then turns to an argument that says that disabilities must be (...) bad, because it is wrong to cause them in others. Later sections discuss whether disabilities might be intrinsically bad or even bad by definition. The final section addresses the claim that disabilities are bad only because society discriminates against people with disabilities. (shrink)

In this paper I address the claim that it is morally wrong to seek the elimination of certain human kinds characterized by disability by preventing the representative members of the relevant kinds from existing. I argue that there are compelling reasons to take a qualified interpretation of this claim seriously. Specifically, the aim of this paper is to endorse one consideration that illustrates a morally problematic feature of seeking to eliminate human kinds. I defend the claim that it is morally (...) wrong to reduce the diversity of humans who recognize each other as agents deserving of equal respect and moral standing. I do not argue that this is the most important factor to consider when addressing the possibility of eliminating human kinds; I claim only that it deserves more serious consideration than it has so far received in the existing literature. This ‘diversity argument’ ought to affect the debate concerning the permissibility of eliminating human kinds that are characterized by disability in two ways: (a) it generates a prima facie obligation to preserve human kinds that ought to affect the way the concerns of disability activists are balanced against our obligation to prevent harm to future persons, and (b) the argument ought to change the polarized tone of the current debate by providing a broadly convincing reason to oppose the elimination of human kinds that shows distinct respect for the unique perspective of disabled persons and the value of their contribution to the moral community. (shrink)

This paper examines the impact of disability on wellbeing and presents arguments against the mere-difference view of disability. According to the mere-difference view, disability does not by itself make disabled people worse off on balance. Rather, if disability has a negative impact on wellbeing overall, this is only so because society is not treating disabled people the way it ought to treat them. In objection to the mere-difference view, it has been argued, roughly, that the view licenses the permissibility of (...) causing disability and the impermissibility of causing nondisability. In her recent article, “Valuing Disability, Causing Disability”, Elizabeth Barnes attempts to show that this causation-based objection does not succeed. We disagree and argue why. We begin by explaining that in order to defeat the causation-based objection it does not suffice to show that it is not always true that the mere-difference view licenses causing disability. Rather, license in some cases, in a way that undermines the plausibility of the mere-difference view, would be sufficient for the causation-based objection to succeed. Then our discussion turns to an important challenge for proponents of the causation-based objection: Some defenders of the mere-difference view are prepared to simply accept the counterintuitive implications of their position. A dialogue with such proponents of the mere-difference view requires arguments with independent traction. We present several such arguments to the effect that the mere-difference view needs to be significantly reduced in scope – and may turn out to be false altogether. (shrink)

The so-called Disability Paradox arises from the apparent tension between the popular view that disability leads to low well-being and the relatively high life-satisfaction reports of disabled people. Our aim in this essay is to make some progress toward dissolving this alleged paradox by exploring the relationship between disability and various “goods of life”—that is, components of a life that typically make a person’s life go better for her. We focus on four widely recognized goods of life (happiness, rewarding relationships, (...) knowledge, achievement) and four common types of disability (sensory, mobility, intellectual, and social) and systematically examine the extent to which the four disability types are in principle compatible with obtaining the four goods of life. Our findings suggest that that there is a high degree of compatibility. This undermines the widespread view that disabilities, by their very nature, substantially limit a person’s ability to access the goods of life, and it provides some guidance on how to dissolve the Disability Paradox. (shrink)

We discuss applications of our account of moral status grounded in person-rearing relationships: which individuals have higher moral status or not, and why? We cover three classes of cases: (1) cases involving incomplete realization of the capacity to care, including whether infants or fetuses have this incomplete capacity; (2) cases in which higher moral status rests in part on what is required for the being to flourish; (3) hypothetical cases in which cognitive enhancements could, e.g., help dogs achieve human-like cognitive (...) capacities. We thereby show that our account does not have the counterintuitive implications alleged by DeGrazia and other critics. (shrink)

Walter Sinnott-Armstrong and Franklin G Miller recently argued that the wrongness of killing is best explained by the harm that comes to the victim, and that ‘total disability’ best explains the nature of this harm. Hence, killing patients who are already totally disabled is not wrong. I maintain that their notion of total disability is ambiguous and that they beg the question with respect to whether there are abilities left over that remain relevant for the goods of personhood and human (...) worth. If these goods remain, then something more is lost in death than in ‘total disability,’ and their explanation of what makes killing wrong comes up short. But if total disability is equivalent with death, then their argument is an interesting one. (shrink)

Disability-positive philosophers often note a troubling tendency to dismiss what disabled people say about their well-being. This chapter seeks to get clearer on why this tendency might be troubling. It argues that recent appeals to lived experience, testimonial injustice, and certain challenges to adaptive-preference reasoning do not fully explain what is wrong with questioning the happiness of disabled people. It then argues that common attempts to debunk the claim that disabled people are happy are worrisome because they threaten everyone’s well-being (...) and are further challenged by an argument from moral risk. (shrink)

One approach to defining enhancement is in the form of bodily or mental changes that tend to improve a person’s well-being. Such a “welfarist account”, however, seems to conflict with moral enhancement: consider an intervention that improves someone’s moral motives but which ultimately diminishes their well-being. According to the welfarist account, this would not be an instance of enhancement—in fact, as I argue, it would count as a disability. This seems to pose a serious limitation for the account. Here, I (...) elaborate on this limitation and argue that, despite it, there is a crucial role for such a welfarist account to play in our practical deliberations about moral enhancement. I do this by exploring four scenarios where a person’s motives are improved at the cost of their well-being. A framework emerges from these scenarios which can clarify disagreements about moral enhancement and help sharpen arguments for and against it. (shrink)

It may seem obvious that causing disability in another person is morally problematic in a way that removing or preventing a disability is not. This suggests that there is a moral asymmetry between causing disability and causing non-disability. This chapter investigates whether there are any differences between these two types of actions that might explain the existence of a general moral asymmetry. After setting aside the possibility that having a disability is almost always bad or harmful for a person (a (...) view that we have critiqued at length elsewhere), seven putative differences are considered. Ultimately, it is concluded that none of these seven factors can ground a general moral asymmetry between causing disability and causing non-disability, though each factor can provide some moral reason to avoid causing disability in certain particular cases. (shrink)

Disability and enhancement are often treated as opposing concepts. To become disabled in some respect is to move away from those who are enhanced in that same respect; to become enhanced is to move away from the corresponding state of disability. This chapter examines how best to understand the concepts of disability and enhancement in this symmetrical way. After considering various candidates, two types of accounts are identified as the most promising: welfarist accounts and typical-functioning accounts. The authors ultimately defend (...) a complex typical-functioning account as the best way to achieve a symmetrical understanding of disability and enhancement. (shrink)

The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large. Those who wish to improve their clinical practice might struggle, however, to keep up with developments across numerous disability communities as well as the ever-growing body of disability studies scholarship. To assist with this goal, I offer (...) an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes. (shrink)

I attempt to adjudicate the disagreement between those who seek to reconceptualize disability as mere difference and their opponents. I do so by reviewing a central conviction motivating the resistance, concerning the relationship between disability and well-being. I argue that the conviction depends on further considerations about the costs and extent of change involved in accommodating individuals with a particular disability trait. I conclude by considering three pay-offs of this clarification.

In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue in this way (...) have argued that disabilities like deafness unacceptably constrain a child’s opportunities. I argue, however, that this conclusion is premature for several reasons. Most importantly, we don’t have a good way of comparing opportunity sets. Thus, we can’t conclude that deaf children will grow up to have a constrained set of opportunities relative to hearing children. I conclude by suggesting that bioethicists and philosophers of disability need to spend more time thinking carefully about the relationship between disability and opportunity. (shrink)

Insofar as many older adults fit some definition of disability, disability studies and gerontology would seem to have common interests and goals. However, there has been little discussion between these fields. The aim of this paper is to open up the insights of disability studies as well as philosophy of disability to discussions in gerontology. In doing so, I hope to contribute to thinking about the good life in late life by more critically reflecting upon the meaning of the body, (...) ability, and the variability of each. My central argument is that we should conceptualize age‐associated bodily variations and abilities not in terms of individual capacity, but in terms of what I call “the extended body.” It is in light of the meaning of embodiment and ability in general that we must think differently and more capaciously about the meaning of late life in particular. (shrink)

The debate over human genetic engineering and enhancement has evolved to the point where dismissive critics have yielded some ground to proponents of engineering programs and their vision of our posthuman future. This is not to say that either human engineering programs or posthumanism has become mainstream but that we have reached a point in history where it is not genetic engineering that conjures dystopian futures in our moral imaginations but the absence of human genetic enhancement. As Ingmar Persson and (...) Julian Savulescu, chair of the Uehiro Centre for Practical Ethics at Oxford University, have argued in Unfit for the Future, if we do not morally enhance human nature, we will remain incapable of... (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the second (...) by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

Does disability make a person worse off? I argue that the best answer is yes and no, because we can be worse off in two conceptually distinct ways. Disabilities usually make us worse off in one way (typified by facing hassles) but not in the other (typified by facing loneliness). Acknowledging two conceptually distinct ways to be worse off has fundamental implications for philosophical theories of well-being.

It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, though we cannot (...) make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (shrink)

In 1977 John Money published the first modern case histories of what he called ‘apotemnophilia’, literally meaning ‘amputation love’ [Money et al., The Journal of Sex Research, 13(2):115–12523, 1977], thus from its inception as a clinically authorized phenomenon, the desire for the amputation of a healthy limb or limbs was constituted as a sexual perversion conceptually related to other so-called paraphilias. This paper engages with sex-based accounts of amputation-related desires and practices, not in order to substantiate the paraphilic model, but (...) rather, because the conception of these (no doubt) heterogeneous desires and practices as symptoms of a paraphilic condition (or conditions) highlights some interesting cultural assumptions about ‘disability’ and ‘normalcy’, their seemingly inherent (un)desirability, and their relation to sexuality. In critically interrogating the socio-political conditions that structure particular desires and practices such that they are lived as improper, distressing and/or disabling, the paper constitutes an exercise in what Margrit Shildrick [Beyond the body of bioethics: Challenging the conventions. In M. Shildrick and R. Mykitiuk (Eds.), Ethics of the body: Postconventional challenges (pp. 1–26). New York: MIT Press, 2005] refers to as “postconventional ethics”. (shrink)

Autism is one of the most compelling, controversial, and heartbreaking cognitive disorders. It presents unique philosophical challenges as well, raising intriguing questions in philosophy of mind, cognitive science, and philosophy of language that need to be explored if the autistic population is to be responsibly served. Starting from the "theory of mind" thesis that a fundamental deficit in autism is the inability to recognize that other persons have minds, Deborah R. Barnbaum considers its implications for the nature of consciousness, our (...) understanding of the consciousness of others, meaning theories in philosophy of language, and the modality of mind. This discussion lays the groundwork for consideration of the value of an autistic life, as well as the moral theories available to persons with autism. The book also explores questions about genetic decision making, research into the nature of autism, and the controversial quest for a cure. This is a timely and wide-ranging book on a disorder that commends itself to serious ethical examination. (shrink)

In a critical intervention into the bioethics debate over human enhancement, philosopher Melinda Hall tackles the claim that the expansion and development of human capacities is a moral obligation. Hall draws on French philosopher Michel Foucault to reveal and challenge the ways disability is central to the conversation. The Bioethics of Enhancement includes a close reading and analysis of the last century of enhancement thinking and contemporary transhumanist thinkers, the strongest promoters of the obligation to pursue enhancement technology. With specific (...) attention to the work of bioethicists Nick Bostrom and Julian Savulescu, the book challenges the rhetoric and strategies of enhancement thinking. These include the desire to transcend the body and decide who should live in future generations through emerging technologies such as genetic selection. Hall provides new analyses rethinking both the philosophy of enhancement and disability, arguing that enhancement should be a matter of social and political interventions, not genetic and biological interventions. Hall concludes that human vulnerability and difference should be cherished rather than extinguished. -/- This book will be of interest to academics working in bioethics and disability studies, along with those working in Continental philosophy (especially on Foucault). (shrink)

Substance use and misuse occurs at a very high rate among people with mental health problems and the relationship between the two conditions is complex. In this paper we argue that treatment of substance use in dual diagnosis clients must begin from an understanding of the losses suffered by those with mental illness. We outline the fundamental condition of effective agency, unified agency, which is disrupted in mental illness and show how this is needed to secure access to central social (...) and moral goods such as continuing employment and satisfying relationships. We argue that drug use will be disvaluable primarily in so far as it too prevents access to this set of agential goods and focuses the agent on synchronic well-being to the exclusion of diachronic well-being. The goals and methods of treatment for dual diagnosis patients should thus reflect the primary impairment to unified agency. (shrink)

The issue of whether biological and psychological properties associated with disability can be harmful, beneficial, or neutral brings up an important philosophical question about how we evaluate disability, and disability’s impact on well-being. The debate is usually characterized as between those who argue disability is intrinsically harmful, and disability rights advocates who argue that disability is just another way of being different, in part, because disability can also provide important benefits. I argue that this debate is a false one, as (...) neither view can capture the more complicated relationship between disability and well-being. I argue that many disabilities are best understood as a kind of pro-tanto extrinsic harm that is characterized in counterfactual terms. This means that our judgments concerning disability and harm must be context-sensitive. (shrink)

In this peer commentary on L. Syd M. Johnson’s “Inference and Inductive Risk in Disorders of Consciousness,” I argue for the necessity of disability education as an integral component of decision-making processes concerning patients with DOC and, mutatis mutandis, all patients with disabilities. The sole qualification Johnson places on such decision-making is that stakeholders are educated about and “understand the uncertainties of diagnosis and prognosis.” Drawing upon research in philosophy of disability, social epistemology, and health psychology, I argue that this (...) educational qualification is insufficient to address systemic ableism and other forms of epistemic bias in quality of life judgments. (shrink)

Fertility specialists, adoption agents, judges and others sometimes take themselves to have a responsibility to fairly adjudicate conflicts that may arise between the procreative and parenting interests of people with disabilities and the interests that their children or potential children have to be nurtured, cared for and protected. An underlying assumption is that having a disability significantly diminishes a person's parenting abilities. My aim is to challenge the claim that having a disability tends to make someone a bad parent by (...) arguing that the interests of prospective parents with disabilities and the interests of their children or potential children are often aligned and mutually supporting. (shrink)

In this chapter, I describe my “post-diagnosis” experiences as the parent of an autistic child, those years in which I tried, but failed, to make sense of the overwhelming and often nonsensical information I received about autism. I argue that immediately after being given an autism diagnosis, parents are pressured into making what amounts to a life-long commitment to a therapy program that (they are told) will not only dramatically change their child, but their family’s financial situation and even their (...) entire mode of existence. Moreover, despite information overload, many treatment programs for autism rely on empty jargon and make completely unrealistic promises, so parents are left feeling overwhelmed and panicked. Even well respected therapy programs encourage parents to spend liberally. Indeed, autistic therapists, who help construct what I refer to as the Culture of Autism, advise parents to commit to a minimum of 35 to 45 hours of intensive therapy every week. The implications are clear: for a parent who works full-time, their autistic child becomes a second full-time job. Autism is big business right now, and therapists are pushing parents to the brink of desperation. So it is not too surprising that there is a desperate cry for a more permanent solution—which is why researchers seek to cure autism. But there are two ways to conceptualize cure. A Therapeutic Cure model (TC) conceives of a cure as a beneficial treatment for the patient that eliminates or ameliorates the harms of the disease or condition. But the notion of a therapeutic cure for autism is highly implausible, given the complexities of autism. Indeed, at this point, the vast majority of researchers have come to the conclusion that the idea of a therapeutic cure for autism is simply a non-starter. Therefore the bulk of research seeking a cure for autism focuses instead on a second approach, which I refer to as the Negative Eugenics Cure model (NEC). With this model, the intention is to eliminate the disease or condition without regard for the health or well-being of the organism carrying the disease or condition. So, with regard to autism, researchers are focusing on identifying genetic markers for autism that can be detected in utero, or in embryos, so that autistic fetuses can be eliminated and autism eradicated by preventing the existence of autistic individuals. I review both models and argue that both fail to provide convincing arguments that the “solution” either offers is desirable. Both rest on the assumption that autism renders a life not worth living which, all things considered, is false. Instead of pushing to cure autism, an idea pervasive in this Culture of Autism, I contend that autistics are individuals with lives worth living. Moreover, rather than expend millions on research to search for the means to eliminate autism, we should instead expend our resources to ensure autistic individuals have access to support they may need. If the phenomenology of autism were better understood and appreciated, the panicked demand for a cure for autism might abate and perhaps autism could be seen as having value in and of its own right. (shrink)

It is now a common opinion in Western countries that a child's impairment would probably place an unexpected burden on her parents, a burden that the parents have not committed themselves to dealing with. Therefore, selective abortion is in general a morally justified option for the parents. I argue that this view is based on biased information about the quality of life of individuals with impairments and their families. Also, a conscious decision to procreate should bring about conscious assent to (...) assuming obligations as a parent. This implies a duty of caring for any kind of child. Consequently, if the child's condition is not such that it would make its life not worth living, and if the parents live in an environment where they are able to provide their child and themselves an adequate well-being, they do not have a morally sufficient reason to terminate the pregnancy on the grounds of fetal abnormality. (shrink)

Disability is primarily a social phenomenon -- a way of being a minority, a way of facing social oppression, but not a way of being inherently or intrinsically worse off. This is how disability is understood in the Disability Rights and Disability Pride movements; but there is a massive disconnect with the way disability is typically viewed within analytic philosophy. The idea that disability is not inherently bad or sub-optimal is one that many philosophers treat with open skepticism, and sometimes (...) even with scorn. The goal of this book is to articulate and defend a version of the view of disability that is common in the Disability Rights movement. To be physically disabled is not to have a defective body, but simply to have a minority body. (shrink)

Much academic work (in philosophy, economics, law, etc.), as well as common sense, assumes that ill health reduces well-being. It is bad for a person to become sick, injured, disabled, etc. Empirical research, however, shows that people living with health problems report surprisingly high levels of well-being - in some cases as high as the self-reported well-being of healthy people. In this chapter, I explore the relationship between health and well-being. I argue that although we have good reason to believe (...) that health problems causing pain and death typically do reduce well-being, health problems that limit capabilities probably don't reduce well-being nearly as much as most people suppose. I then briefly explore the consequences of this conclusion for political philosophy and ethics. If many health problems don't significantly reduce well-being, why should governments go to great expense to prevent or treat them? Why should parents be obliged to ensure the health of their children? (shrink)

The ‘Ashley treatment’ has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are philosophically robust. (...) I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life, I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity, I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face. (shrink)

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in (...) the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)