Disability and Well-Being

Abstract:This paper considers novel ethical issues pertaining to near-future artificial intelligence (AI) systems that seek to support, maintain, or enhance the capabilities of older adults as they age and experience cognitive decline. In particular, we focus on smart assistants (SAs) that would seek to provide proactive assistance and mediate social interactions between users and other members of their social or support networks. Such systems would potentially have significant utility for users and their caregivers if they could reduce the cognitive load (...) for tasks that help older adults maintain their autonomy and independence. However, proactively supporting even simple tasks, such as providing the user with a summary of a meeting or a conversation, would require a future SA to engage with ethical aspects of human interactions which computational systems currently have difficulty identifying, tracking, and navigating. If SAs fail to perceive ethically relevant aspects of social interactions, the resulting deficit in moral discernment would threaten important aspects of user autonomy and well-being. After describing the dynamic that generates these ethical challenges, we note how simple strategies for prompting user oversight of such systems might also undermine their utility. We conclude by considering how near-future SAs could exacerbate current worries about privacy, commodification of users, trust calibration and injustice. (shrink)

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)

Will Daddario’s article, “What Acceptance Is,” brilliantly moves through aspects of grief, despair, and Acceptance; it allows grievers to meaningfully hold together aspects of loss that are otherwise fragmented and dispersed in our subjective experience of it. Daddario traces contradictions that permeate our experiences not only of grief and loss, but also of how we live in light of them. This includes the paradoxical relationships between accepting and giving, cure and poison, being open and closed off, centered and decentered, and, (...) as I will later add, of willingness and willfulness. His confrontation with acceptance resists the typical rectilinear picture (e.g., the “stages of grief”), ultimately providing us with a picture of the process out of despair that manages to retain its life and dynamic movement despite the fixity of language. ... (see more) -/- . (shrink)

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 schemas. 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)

The question of how disability affects wellbeing has occupied a number of philosophers in recent years. However, this literature has proceeded without a careful examination of the fairly vast empirical research on the topic. In this paper, I review the scholarly literature and discuss some philosophically-relevant aspects of it. On average, those with disabilities have a significantly lower level of wellbeing than those without disabilities. Furthermore, there is strong evidence that this reduction in wellbeing is not due entirely to ableist (...) factors. Hence, I argue that it shows that the Mere Difference View of disability is most likely false. However, the literature indeed shows that disabled people typically live good lives. Thus, despite its rejection of the Mere Difference View, it still upholds a disability-affirmative view. These findings allow for a measured critique of some of Peter Singer’s writings on disability. (shrink)

As the world population is rapidly aging, stakeholders must address the care of the elderly with great concern. Also, loss of dignity is often associated with aging due to dementia, mobility problems and diminished functional autonomy. However, dignity is a polysemic term that is deemed useless by some ethicists. To counter this claim, we propose four concepts to define it better and make use accurately of this notion. These are human dignity, dignity of identity, dignities of excellence and attributed dignities. (...) Finally, we explain the importance of solicitude and human dignity in the care of the elderly. This will ensure the respect, friendship and dignity of the elderly in providing geriatric ethical care. (shrink)

Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not and that such judgments by medical practitioners in particular can be biased. Guided by their desire to do good and avoid harm, surgeons often rely on "the eyeball test" to decide whether a patient will or will not benefit from surgery. But the eyeball test can easily harbor a range of implicit judgments and (...) biases against patients with disabilities, including erroneous assumptions about QoL. We critique the use of the "eyeball" test and offer suggestions to reduce bias and ensure that patients’ values are more consistently prioritized in surgical decision-making. (shrink)

A review of Elizabeth Barnes' The Minority Body.

ABSTRACT – Epistemic Injustice in the Education of People with Mental Disabilities. This article offers a perspective on inclusive education based on Fricker’s conception of epistemic injustice. What is the relationship be- tween inclusive education and epistemic injustice in the case of students with mental deficiencies? By adapting Fricker’s thesis to this extreme case, epistemic injustice can be explored via the social model of disability (SMD). Accordingly, we propose that epistemic injustice harms the entire educa- tional community and society. -/- (...) . (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)

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)

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)

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)

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

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)

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 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)

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 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)

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)

Consider two commonly cited requirements of love. The first is that we should love people for who they are. The second is that loving people should involve concern for their well-being. But what happens when an aspect of someone’s identity conflicts with her well-being? In examining this question, I develop an account of loving someone in spite of something. Although there are cases where loving in spite of is merited, I argue that we generally do wrong to love people in (...) spite of who they are, even where it appears that some aspect of their identity is in tension with their well-being. (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)

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)

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. (This paper won the APA’s Routledge, Taylor & Francis Prize in 2017.).

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)

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)

Philosophers concerned with what would be good for a person sometimes consider a person’s past desires. Indeed, some theorists have argued by appeal to past desires that it is in the best interests of certain dementia patients to die. I reject this conclusion. I consider three different ways one might appeal to a person’s past desires in arguing for conclusions about the good of such patients, finding flaws with each. Of the views I reject, the most interesting one is the (...) view that prudential value is, at least partly, concerned with the shape of a life as a whole. (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)

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)

This letter was submitted to the Senate Standing Committee on Legal and Constitutional Affairs, Government of Canada, on 29th January, 2021, as final debate over Bill C-7 was being undertaken in the Senate regarding MAiD and the strong opposition to the legislation expressed across the Canadian disability community. It draws on our individual and joint work on eugenics, well-being, and disability.