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

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the (...) analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a way (...) that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. -/- The tension between (...) the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (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)

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

Both mainstream and disability bioethics sometimes contend that the self-assessment of disabled people about their own well-being is distorted by adaptive preferences that are only held because other, better options are unavailable. I will argue that both of the most common ways of understanding adaptive preferences—the autonomy-based account and the well-being account—would reject blanket claims that disabled people’s QOL self-assessment has been distorted, whether those claims come from mainstream bioethicists or from disability bioethicists. However, rejecting these generalizations for a more (...) nuanced view still has dramatic implications for the status quo in both health policy and clinical ethics. (shrink)

In “Bioethics and the Moral Authority of Experience,” Nelson et al. explore what they refer to as “The Paradox of Experience.” The authors characterize this paradox formally as follows:(A) Personal...

Disability activists have sometimes claimed their disability has actually increased their well-being. Some even say they would reject a cure to keep these gains. Yet, these same activists often simultaneously propose improvements to the quality and accessibility of assistive technology. However, for any argument favoring assistive over curative technology to work, there must be a coherent distinction between the two. This line is already vague and will become even less clear with the emergence of novel technologies. This paper asks and (...) tries to answer the question: what is it about the paradigmatic examples of curative and assistive technologies that make them paradigmatic and how can these defining features help us clarify the hard cases? This analysis will begin with an argument that, while the common views of this distinction adequately explain the paradigmatic cases, they fail to accurately pick out the relevant features of those technologies that make them paradigmatic and to provide adequate guidance for parsing the hard cases. Instead, it will be claimed that these categories of curative or assistive technologies are defined by the role the technologies play in establishing a person’s relational narrative identity as a member of one of two social groups: disabled people or non-disabled people. (shrink)

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also a (...) power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (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)

In this paper, I make three arguments regarding Crisis Standards of Care developed during the COVID-19 pandemic. First, I argue against the consideration of third person quality of life judgments that deprioritize disabled or chronically ill people on a basis other than their survival, even if protocols use the language of health to justify maintaining the supposedly higher well-being of non-disabled people. Second, while it may be unavoidable that some disabled people are deprioritized by triage protocols that must consider the (...) likelihood that someone will survive intensive treatment, Crisis Standards of Care should not consider the amount or duration of treatment someone may need to survive. Finally, I argue that, rather than parsing who should be denied treatment to maximize lives saved, professional bioethicists should have put our energy into reducing the need for such choices at all by resisting the systemic injustices that drive the need for triage. (shrink)

In this paper, I argue that disabled people have a right to assistive technology, but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the (...) theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society’s dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension. (shrink)

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also a (...) power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (shrink)

With increased frequency, reproductive technologies are placing prospective parents in the position of choosing whether to bring a disabled child into the world. The most well-known objection to the act of “selecting against disability” is known as the Expressivist Argument. The argument claims that such acts express a negative or disrespectful message about disabled people and that one has a moral reason to avoid sending such messages. We have two primary aims in this essay. The first is to critically examine (...) the standard Expressivist Argument, which we analyze in terms of the expression of ableist attitudes. We distinguish three interpretations of the argument and argue that each version faces serious objections. Our second aim is to articulate two closely related arguments that also pertain to expressed ableist attitudes. The Expressive Harms Argument maintains that there is a moral reason to avoid actions that give rise to the perception of ableist attitudes in cases where this is likely to have negative consequences for disabled people. The Ableist Motivation Argument speaks against selecting against disability in cases where one would be motivated by ableist attitudes. While these two arguments face various objections, we seek to establish that they are more promising than the most natural interpretations of the Expressivist Argument. (shrink)

The hashtag #RepresentationMatters is widely used among disability activists on social media because disabled people are often simply ignored in popular culture. Several disabled characters inhabit the Avatar: The Last Airbender universe, but Toph Beifong is the most prominent. Toph is a major character who plays an essential role in the victory over the Fire Nation's imperialism. A rarity in media, Toph's character has as much depth as any member of Team Avatar. The “Irrationally and Infectiously Happy Disabled Person” is (...) a master narrative that contrasts with Disabled Person Better Off Dead, but which is also damaging to disabled people. Barnes argues that hermeneutical injustice appears when disabled people try but fail to make sense of their experience of flourishing with a disability because it is so commonly assumed that disability consigns a person to a horrific, tragic fate. (shrink)

Given its subject matter, biological psychiatry is uniquely poised to lead STEM DEI initiatives related to disability. Drawing on literatures in science, philosophy, psychiatry, and disability studies, we outline how that leadership might be undertaken. We first review existing opportunities for the advancement of DEI in biological psychiatry around axes of gender and race. We then explore the expansion of biological psychiatry’s DEI efforts to disability, especially along the lines of representation and access, community accountability, first person testimony, and revised (...) theoretical frameworks for pathology. We close with concrete recommendations for scholarship and practice going forward. By tackling head-on the challenge of disability inclusion, biological psychiatry has the opportunity to be a force of transformation in the biological sciences and beyond. (shrink)

Introduction This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate. Case description Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia (...) became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia's parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged “mental age” and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention. Discussion The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman. (shrink)

This chapter argues that, sometimes, disabled bioethicists actually have a duty to do public philosophy. It contends that this duty can be justified with ethical, epistemic, and prudential reasons. Any triage protocol will discriminate against disabled people if one uses a broadly inclusive definition of disability that subsumes diseases or chronic illnesses that can be disabling in their effects, like cancer or kidney failure. The most obvious reasons justifying a duty to do public philosophy as a disabled bioethicist are ethical. (...) One example of this testimonial injustice vis à vis disability and well‐being occurred during the early days of the COVID‐19 pandemic when medical triage protocols were being developed to ration critical care resources. Discriminatory triage protocols also diminish a disabled person's autonomy. The COVID‐19 pandemic amplified these costs in many ways but also created an opportunity for philosophical reflection that demonstrates the importance of more public‐facing work. (shrink)

While disability theory and feminist theory share a great deal in their methodology and could potentially share quite a bit in their political commitments, there is a tension or conflict between these two approaches as they evaluate prenatal diagnosis. For the feminist disability advocate, this can be thought of as a type of ideological double bind. This paper will dissolve this tension by way of John Dewey’s version of American pragmatism. First, I will map out the landscape of the prenatal (...) diagnosis double bind by describing the skeptical disability arguments and supportive feminist arguments. Then, I will describe how Dewian pragmatism can dissolve the tension between disability advocacy and feminism by giving lived experience priority over absolutist ethical theories and recommending that we deliberately evolve our social institutions to work better in our social environment. Finally, I will suggest some reforms of the social institutions surrounding prenatal diagnosis, taking into account the interests of people with disabilities, caregivers who tend to be female, and pregnant women. (shrink)

In his article "Markets and the Needy: Organ Sales or Aid?" T. L. Zutlevics briefly touches upon the conceptual link between the practice of living1 suppliers2 selling their kidneys and prostitutes selling sexual services. In an attempt to defuse Gerald Dworkin's (Dworkin 1993) appeals to autonomy that undergird his justification of establishing a controlled market in transplantable organs from living suppliers, Zutlevics writes:Whilst initially appealing, this argument is problematic in that it justifies a great deal more than allowing the poor (...) to sell their organs. The situations of the poor can be so desperate that even actions which cause extreme harm would constitute an improvement in their situation. . . . .. (shrink)

Recent scholarship suggests that the practices of selling sex and selling kidneys can be understood as examples of serious harms that are sometimes chosen by autonomous individuals who find themselves in difficult straits. This analogy between kidney sales by live suppliers and prostitution deserves careful, rigorous consideration. Ideas about autonomy, paternalism, systemic oppression, commodification, and the human body are at the core of each controversy. This paper seeks to use the well-developed, radical feminist literature opposing prostitution and critiquing the liberal (...) tradition’s account of autonomy to explain why the sale of kidneys by live suppliers should continue to be prohibited in the United States. (shrink)