Disability and Well-Being

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 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” (2014), 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 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)

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)

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)

Disability rights activists often claim that disability is not—by itself—something that makes disabled people worse off. A popular objection to such a view of disability is this: were it correct, it would make it permissible to cause disability and impermissible to cause nondisability. The aim of this article is to show that these twin objections don’t succeed.

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)

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)

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)

Concepts We thank all three commentators for extremely constructive, insightful, and gracious commentaries. We cannot address all their valuable points. In this response, we elucidate and relate the concepts of addiction, disease, disability, autonomy, and well-being. We examine some of the implications of these relationships in the context of the helpful responses made by our commentators. We begin with the definitions of the relevant concepts which we employ: ¥? ? ? Addiction (Liberal Concept): An addiction is a strong appetite. ¥? (...) ? ? Appetites: An appetite is a disposition that generates desires that are urgent, oriented toward some rewarding behavior, periodically recurring, often in predictable circumstances, sated temporarily by their fulfillment, and generally provide pleasure. ¥? ? ? Disease (Naturalistic Concept): A disease is some biological or psychological state that results in subfunctioning of the organism in a given set of environmental and social circumstances, C. The reference class is a natural class of organisms of uniform functional design; specifically, an age group of a sex of a species. A normal function is a part or process within members of the reference class and is a statistically typical contribution by it to their individual survival and reproduction (Boorse 1977, 1997). ¥? ? ? Disability (Welfarist Concept): A disability is a relatively stable biological or psychological state that tends to reduce the amount of well-being that this person will enjoy in a given set of environmental and social circumstances (Savulescu and Kahane 2009; Kahane and Savulescu, 2009). ¥? ? ? Autonomy (Rationalist Concept): A person rationally desires or values some state of affairs if and only if he or she desires that state of affairs while (1) being in possession of all relevant. (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)

In his influential theory of health Nordenfelt bases the concepts of health and illness on the notions of ability and disability. A premise for this is that ability and disability provide a more promising, adequate, and useful basis than well-being and suffering. Nordenfelt uses coma and manic episodes as paradigm cases to show that this is so. Do these paradigm cases (and thus the premise) hold? What consequences does it have for the theory of health and illness if it they (...) do not? These are the key questions in this article, which first presents the relationship between pain and disability in Nordenfelt’s theory and the paradigm cases he uses to argue for the primacy of disability over pain. Then, Nordenfelt’s concepts of illness are outlined, highlighting its presumptions and arguments. The main point is that if you do not have an action-theoretical perspective, it is not obvious that disability is the core concept for illness. The compelling effect of the paradigm cases presupposes that you see ability as the primary issue. To those who do not share this presumption, people in coma may not be ill. There are alternative well founded arguments for the primacy of first person experiences for the concept of illness. Hence, we need better arguments for the primacy of disability over first person experiences in illness, or first-person experience should be more primarily included in the concept of illness. (shrink)

Many believe that severe intellectual impairment, blindness or dying young amount to serious harm and disadvantage. It is also increasingly denied that it matters, from a moral point of view, whether something is biologically normal to humans. We show that these two claims are in serious tension. It is hard explain how, if we do not ascribe some deep moral significance to human nature or biological normality, we could distinguish severe intellectual impairment or blindness from the vast list of seemingly (...) innocent ways in which we fail to have as much wellbeing as we could, such not having super-intelligence, or not living to 130. We consider a range of attempts to draw this intuitive normative distinction without appealing to normality. These, we argue, all fail. But this doesn't mean that we cannot draw this distinction or that we must, implausibly, conclude that biological normality does possess an inherent moral importance. We argue that, despite appearances, it is not biological normality but rather statistical normality that, although lacking any intrinsic moral significance, nevertheless makes an important moral difference in ways that explain and largely justify the intuitive distinction. (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)

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)

Attempts to determine or to select what kind of person or people to bring into existence are controversial. This is particularly true of “negative selection” or “selecting against” a certain type of person—that is, the attempt to prevent a person of a certain type, or people of that type, from existing. Virtually everyone agrees that some instances of negative selection are objectionable—for example, that selection against healthy people would be wrong, particularly if this were combined with positive selection of people (...) with serious diseases. But some people believe that all negative selection is objectionable and therefore that all “selection for existence,” whether positive or negative, is objectionable. For if negative selection is objectionable, it seems to follow that positive selection is as well, since the attempt to bring a person of a certain type into existence is simultaneously an attempt not to bring into existence a person who is not of that type. In short, positive selection is implicitly negative as well. (shrink)

The “disability paradox” is the idea that for those who become severely disabled, their own quality of life assessment remains at or slightly below the QoL assessments of normal controls. This is a source of skepticism regarding third-person QoL judgments of the disabled. I argue here that this skepticism applies as well to those who are in the minimally conscious state. For rather simple means of sustaining an MCS patient’s life, the cost of being wrong that the patient would not (...) want further support is high. Pair this cost with the reason to be skeptical of third-person judgments, and my argument suggests not withholding food and water from MCS patients. (shrink)

It seems that we should want to avoid becoming intellectually disabled. It is common for philosophers to infer from this that those of us without intellectual disabilities are intrinsically better off than individuals with intellectual disabilities, and that there are consequently stronger moral reasons for others to preserve our lives than to preserve the lives of intellectually disabled individuals. In this article, I argue against this inference from what states we should prefer for ourselves to how much moral reason others (...) have to maintain these states on our behalves. I argue that there is an important sense in which an outcome contributes to our well-being to a certain degree, namely the extent to which others should want it out of care for us, which plays a central role in determining the moral priority of ensuring the outcome for us over ensuring distinct outcomes for others. But an outcome's contribution to our well-being in this sense can come apart from the extent to which we should prefer it for ourselves. (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)

According to what we call the Principle of Procreative Beneficence, couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB, explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competing principles of procreative selection such as (...) that of procreative autonomy. In the third part of the paper, we consider the relation between PB and disability. We develop a revisionary account of disability, in which disability is a species of instrumental badness that is context- and person-relative. Although PB instructs us to aim to reduce disability in future children whenever possible, it does not privilege the normal. What matters is not whether future children meet certain biological or statistical norms, but what level of well-being they can be expected to have. (shrink)

In this paper I look at the much-discussed case of disabled parents seeking to conceive (or “selecting for”) 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, as most assume, but rather 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. I conclude by suggesting that bioethicists and philosophers of disability need to more carefully consider the relationship between disability and opportunity. (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 disability rights movement has often been closely associated with the liberal values of individual choice and independence, or the?ethics of agency?, where enhancing the capacity to make autonomous decisions in various policy and practice-based contexts is said to facilitate disabled people's well-being. Nevertheless, other liberal values are derived from what will be termed here the?ethics of self-acceptance?. The latter is more disguised in liberalism and the DRM, as rather than emphasising the capacity to make autonomous decisions, self-acceptance focuses on (...) the positive acceptance of individual limitations, but again to enhance well-being. The further argument is that while the ethics of agency and self-acceptance often logically cohere and overlap, through promoting the values of self-respect and relational autonomy, dilemmas arise from our asymmetrical, or uneven, dispositions towards time, and present and future lives and experiences. For example, positively accepting individual limitations allows for a present-oriented immersion in?the moment?, but which often requires some suspension of future-oriented goals and aspirations. Understanding some of the implications of this asymmetry, and the dilemmas arising from it, provide important insights concerning approaches to physical and intellectual impairments and the subsequent debates within the DRM, social policy and welfare practice. (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)

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.

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)

This article presents an analysis of the concept of disability in Amartya Sen’s capabilities and functionings approach in the context of Information and Communication Technologies (ICT). Following a critical review of the concept of disability—from its traditional interpretation as an essentially medical concept to its later interpretation as a socially constructed category—we will introduce the concept of functional diversity. The importance of human diversity in the capabilities and functionings approach calls for incorporating this concept into the analysis of well-being and (...) quality of life in persons with disability—aspects in which ICT currently plays a major role. When one contemplates these technologies, it becomes clear that factors such as accessibility, design for all, and user participation in development and implementation processes are key strategies in promoting equal rights and equal opportunity for persons with disability in the different environments of the information society. (shrink)

This paper discusses the issues of deciding to have a child with mental retardation, and of terminating a pregnancy when the future child is known to have the same disability. I discuss these problems by criticizing a utilitarian argument, namely, that one should act in a way that results in less suffering and less limited opportunity in the world. My argument is that future parents ought to assume a strong responsibility towards the well-being of their prospective children when they decide (...) to reproduce. The moral point in cases in which our acts affect the well-being of future children should be expressed strictly in terms of parents' culpability. Future children thus do not have current moral standing but presently living persons have current obligations to consider the presumable effects of their actions on future people. I will also argue that there are morally significant differences between 'selective contraception' and selective abortion. (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)