Disability and Well-Being

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)

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)

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)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more specific clusters (...) of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

[Forthcoming Fall 2022] Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can (...) be detrimental to the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic frameworks. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

A review of Elizabeth Barnes' The Minority Body.

Testimony by disabled people concerning the relationship between their experiences and overall well-being has long been an object of social scientific and humanistic study. Often discussed in terms of “the disability paradox,” these studies contrast the intuitive horribleness of certain impaired states against the testimonial evidence suggesting that people in such states do not in fact experience their lives as horrible. Explanations for why such testimonial evidence is suspect range from claims about adaptive preferences to issues of qualitative research methodology. (...) In this paper, I argue that the problem lies not with the evidence, but the intuitions in question. Using the disability paradox as a case study, I further argue against the use of the concept of intuitive horribleness in social epistemology and beyond. I contend that testimonial and hermeneutical injustices are baked into most deployments of the concept, and even if one were to justify its use in select cases, it should be accompanied with prima facie suspicion. In conclusion, I discuss the implications of this analysis for the literature on transformative experience and also for the stakes of multi-cultural, historically informed philosophical inquiry more generally. (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)

It is commonly thought that disability is a harm or “bad difference” because having a disability restricts valuable options in life. In his recent essay “Disability, Options and Well-Being,” Thomas Crawley offers a novel defense of this style of reasoning and argues that we and like-minded critics of this brand of argument are guilty of an inconsistency. Our aim in this article is to explain why our view avoids inconsistency, to challenge Crawley's positive defense of the Options Argument, and to (...) suggest that this general line of reasoning employs a double standard. (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)

Luck egalitarianism’s commitment to neutralizing brute luck inequalities is thought to imply that the elimination of disabilities is an appropriate way to eliminate the unchosen disadvantage that often accompanies disabilities. This implication is not only intuitively objectionable to some, especially those concerned with disability justice, but is subject to objections from relational egalitarians that should be taken seriously. This paper defends the claim that disability elimination is not a natural implication of luck egalitarian theories of justice and that luck egalitarians (...) can avoid the related relational egalitarian objections. I take this to be the case because luck egalitarians can consistently endorse three commitments that, together, take disability elimination off the menu of possible ways to redress the disadvantage of persons with disabilities. These three commitments are: i) the rejection of the view that disability intrinsically makes a person worse off; ii) the endorsement of the fundamental equality of all persons; and iii) the view that luck egalitarianism advances a theory about the arrangement of social institutions. (shrink)

This paper has two goals. The first is to argue that the field of bioethics in general and the literature on ideal vs. nonideal theory in particular has underemphasized a primary problem for normative theorizing: the role of conditioning principles. I define these as principles that implicitly or explicitly ground, limit, or otherwise determine the construction and function of other principles, and, as a result, profoundly impact concept formation, perception, judgment, and action, et al. The second is to demonstrate that (...) ableism is one such conditioning principle and that it undermines the field of bioethics and the practice of biomedicine from achieving the aim of justice as fairness. After briefly addressing the history and critiques of principlism in bioethics, I lay out and defend my account of conditioning principles. I then argue that ableism is one such principle and demonstrate it at work through an analysis of a storied debate between Eva Kittay, Peter Singer, and Jeff McMahan. In conclusion, I contend that the ethical and philosophical dangers of conditioning principles are too easily exacerbated by ideal theory frameworks, and I do so by demonstrating how they are especially liable to generate epistemic injustice, especially contributory and hermeneutical injustice. (shrink)

The privation theory of evil (PTE) states that evil is the absence of some good that is supposed to be present. For example, if vision is an intrinsic good, and if human beings are supposed to have vision, then PTE implies that a human being’s lacking vision is an evil, or a bad state of affairs. The mere-difference view of disability (MDD) states that disabilities like blindness are not inherently bad. Therefore, it would seem that lacking sight is not a (...) bad state of affairs. Thus PTE and MDD seem to be in tension. This essay discusses that apparent tension and explains how it might be resolved without doing violence to either view. Given the prominence of PTE in the history of Christian theology, and the wide support for MDD among disability theorists, it is worth finding a way to harmonize these two views. (shrink)

Many endorse the Bad-Difference View of disability which says that disability makes one likely to be worse off even in the absence of discrimination against the disabled. Others defend the Mere-Difference View of disability which says that, discounting discrimination, disability does not make one likely to be worse off. A common motivation for the BDV is the Options Argument which identifies reduction in valuable options as a harm of disability. Some reject this argument, arguing that disabled people's prospects aren't hindered (...) by having fewer options. In this article, I defend the Options Argument by arguing that, in disability cases, possessing a greater number of valuable options seems to overall improve well-being prospects. As such, the Options Argument appears to be sound and – although it doesn't establish the BDV – it lends plausibility to the BDV by identifying a potentially significant cost of disability. (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)

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)

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)

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)

I am grateful to Philip Reed for his article ‘Expressivism at the Beginning and End of Life’. His piece compellingly demonstrates the import of expanding analyses concerning the expressivist thesis beyond the reproductive sphere to the end-of-life sphere. I hope that his intervention spurns further work on this connection. In what follows, I want to focus on what I take to be moments of slippage in his use of the concept of disability, a slippage to which many disability theorists succumb. (...) In short, I argue that there are crucial moments in his argument where Reed runs together cases of disability that should be kept distinct—at minimum for the context in which he discusses them. Namely, forms of disability the suffering of which justice can eliminate versus those that ‘no amount of accessibility and social justice could eliminate’.1 Disability studies scholars and philosophers of disability have long noted that certain types of disability are often ‘left …. (shrink)

This chapter argues for a normative distinction between disabilities that are inherently negative with respect to wellbeing and disabilities that are inherently neutral with respect to wellbeing. First, after clarifying terms I discuss recent arguments according to which possession of a disability is inherently neutral with respect to wellbeing. I note that though these arguments are compelling, they are only intended to cover certain disabilities, and in fact there exists a broad class regarding which they do not apply. In section (...) three I discuss two such problem cases: Locked-in Syndrome and the Minimally Conscious State. In section four I explain why these are cases in which possession of the disability makes one worse off overall. I do so by explicating the notion of control over one’s situation. I argue that disabilities that significantly impair control over one’s own situation – e.g., Locked-in Syndrome and the Minimally Conscious State – strongly tend to be inherently negative with respect to wellbeing, while disabilities that do not strongly tend to be inherently neutral. The upshot is that we must draw an important normative distinction between disabilities that undermine this kind of control, and disabilities that do not. (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 life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these questions: they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or (...) disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues. This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult topics: How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified. This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with 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 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)

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)

This is a critical response to "Defending Eugenics", published in MBR in 2018.

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)

This paper endeavors to provide an explanation of health and the make-up of healthcare through distributive justice theories and access to the development of capabilities as the basis of a just healthcare structure. It also looks at matters around first level attention in healthcare as fundamental in the development of capabilities and access to functional diversity. It amounts, therefore, to a redefinition of bioethical contractualism, applied at the structure as basis of justice and the capability development.

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)

People who have not experienced diseases and health conditions tend to judge them to be worse than they are reported to be by people who have experienced them. This phenomenon, known as the disability paradox, presents a challenge for health policy, and in particular, healthcare resource distribution. This divergence between patient and public preferences is most plausibly explained as a result of hedonic adaptation, a widespread phenomenon in which people tend to adapt fairly quickly to the state they are in, (...) good or bad, and adjust their baseline utility accordingly.If patient utilities can be shown to be inappropriate for use in public policy decision making, the disability paradox fades away. This paper offers a critique of one such attempt: the idea that adaptation leads to adaptive preferences. I argue that none of the main accounts of adaptive preferences in fact characterise adapted patient preferences as irrational. Adapted preferences should not, therefore, be treated as synonymous with adaptive preferences. I suggest that much patient adaptation should be understood as a form of the ubiquitous human ability to respond to environmental change. Consequently, we ought not to discount patient preferences. (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 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)

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)

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)

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)

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)

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.

The Eugenic Mind Project is a wide-ranging, philosophical book that explores and critiques both past and present eugenic thinking, drawing on the author’s intimate knowledge of eugenics in North America and his previous work on the cognitive, biological, and social sciences, the fragile sciences. Informed by the perspectives of Canadian eugenics survivors in the province of Alberta, The Eugenic Mind Project recounts the history of eugenics and the thinking that drove it, and critically engages contemporary manifestations of eugenic thought, newgenics. (...) An accessible, original work of scholarship adopting what the author calls a standpoint eugenics, this book focuses on the roots of eugenic thinking past and present. It will provoke and enrich discussions about human nature and human diversity, the social uses of biotechnology, and social policy governing future generations. You can download the preface and acknowledgements here. (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)

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)

Eilers Miriam, Gru¨ber Katrin, and Rehmann-Sutter Christoph’s latest edited volume, The Human Enhancement Debate and Disability: New Bodies for a Better Life, may at first seem to be just another book about human enhancement, on which there is a significant detailed literature. But, in fact, this book provides a novel16 perspective to the human enhancement debate by observing it through the disability lens, even as it gathers contributions from various experts from diverse fields. This interdisciplinary approach shows how disability and (...) human enhancement are tightly correlated in the debate on the latter. (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 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)

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)

I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly cognitively (...) compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (shrink)