Disability Justice in Public Health Emergencies is the first book to highlight contributions from critical disability scholarship to the fields of public health ethics and disaster ethics. It takes up such contributions with the aim of charting a path forward for clinicians, bioethicists, public health experts, and anyone involved in emergency planning to better care for disabled people—and thereby for all people—in the future. Across 11 chapters, the contributors detail how existing public health emergency responses have failed and still fail (...) to address the multi-faceted needs of disabled people. They analyze complications in the context of epidemic and pandemic disease and emphasize that vulnerabilities imposed upon disabled people track and foster patterns of racial and class domination. -/- The central claim of the volume is that the ethical and political insights of disability theory and activism provide key resources for equitable disaster planning for all. The volume builds upon the existing efforts of disability communities to articulate emergency planning priorities and response measures that take into account the large body of qualitative and quantitative research on disabled people’s health, needs, and experiences. It is only by listening to disabled people’s voices that we will all fare better in future public health emergencies. (shrink)

The COVID-19 (Coronavirus disease of 2019) pandemic has led to intense conversations about ventilator allocation and reallocation during a crisis standard of care. Multiple voices in the media and multiple state guidelines mention reallocation as a possibility. Drawing upon a range of neuroscientific, phenomenological, ethical, and sociopolitical considerations, the authors argue that taking away someone’s personal ventilator is a direct assault on their bodily and social integrity. They conclude that personal ventilators should not be part of reallocation pools and that (...) triage protocols should be immediately clarified to explicitly state that personal ventilators will be protected in all cases. (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)

An increasing number of scholars at the intersection of feminist philosophy and critical disability studies have turned to Merleau-Ponty to develop phenomenologies of disability or of what, following Rosemarie Garland-Thomson, I call "non-normate" embodiment. These studies buck the historical trend of philosophers employing disability as an example of deficiency or harm, a mere litmus test for normative theories, or an umbrella term for aphenotypical bodily variation. While a Merleau-Pontian-inspired phenomenology is a promising starting point for thinking about embodied experiences of (...) all sorts, I here draw a cautionary tale about how ableist assumptions can easily undermine accounts of non-normate experience. I first argue that the omission or misguided treatment of disability within the history of philosophy in general and the phenomenological tradition in particular is due to the inheritance of what I call “the ableist conflation” of disability with pain, suffering, and disadvantage. I then show that Merleau-Ponty’s famous reading of the blind man’s cane is problematic insofar as it omits the social dimensions of disabled experiences, misconstrues the radicality of blindness as a world-creating disability, and operates via an able-bodied simulation that confuses object annexation or extension with incorporation. In closing, I contend that if phenomenology is to overcome the errors of traditional philosophy, as Merleau-Ponty once hoped, it must heed the insights of “crip” or non-normate phenomenology, which takes the lived experience of disability as its point of departure. [French translation forthcoming in Pour une phénoménologie critique, ed. Donald A. Landes, Quebec City, Les Presses de l'Université Laval/Paris, J.Vrin]. (shrink)

In the exploratory study reported here, we tested the efficacy of an intervention designed to train teenagers with Möbius syndrome (MS) to increase the use of alternative communication strategies (e.g., gestures) to compensate for their lack of facial expressivity. Specifically, we expected the intervention to increase the level of rapport experienced in social interactions by our participants. In addition, we aimed to identify the mechanisms responsible for any such increase in rapport. In the study, five teenagers with MS interacted with (...) three naïve participants without MS before the intervention, and with three different naïve participants without MS after the intervention. Rapport was assessed by self-report and by behavioral coders who rated videos of the interactions. Individual non-verbal behavior was assessed via behavioral coders, whereas verbal behavior was automatically extracted from the sound files. Alignment was assessed using cross recurrence quantification analysis and mixed-effects models. The results showed that observer-coded rapport was greater after the intervention, whereas self-reported rapport did not change significantly. Observer-coded gesture and expressivity increased in participants with and without MS, whereas overall linguistic alignment decreased. Fidgeting and repetitiveness of verbal behavior also decreased in both groups. In sum, the intervention may impact non-verbal and verbal behavior in participants with and without MS, increasing rapport as well as overall gesturing, while decreasing alignment. (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)

The Life Worth Living investigates the exclusion of and discrimination against disabled people across the history of Western moral philosophy. Building on decades of activism and scholarship, Reynolds shows how longstanding views of disability are misguided and unjust, and he lays out a vision for an anti-ableist moral future. The introduction and first chapter are available to download here. -/- Table of Contents: Introduction: The Ableist Conflation. Part I: Pain. 1. Theories of Pain. 2. A Phenomenology of Chronic Pain. Part (...) II: Disability. 3. Theories of Disability. 4. A Phenomenology of Multiple Sclerosis. Part III: Ability. 5. Theories of Ability. 6. A Phenomenology of Ability. Conclusion: An Anti-Ableist Future. (shrink)

Disability has been a topic in multiple areas of philosophical scholarship for decades. However, it is only in the last ten to fifteen years that philosophy of disability has increasingly become recognized as a distinct field. Engaging a range of canonical texts across the Western intellectual tradition, I argue that the foundational question of continental philosophy of disability is the question of the meaning of ability. I then explore three pathways toward this question: the verdict of bodies, the bind of (...) bodies and worth, and the dogma of individual ability. I contend that unlike the question of the meaning of being, the question of the meaning of ability is not simply a problem of forgetting but instead primarily a problem of dehumanization. (shrink)

On September 26th, 2023, the National Institute on Minority Health and Health Disparities (NIMHD) officially designated disabled people as a health disparity population, marking the most significant event for disabled people's health as it relates to the NIH. In this paper, I discuss the larger socio-political context as well as the clinical import of this historic decision.

It is widely known that Black people are significantly more likely to be killed by the police in the United States of America than white people. What is less widely known is that nearly half of all people killed by the police are disabled people. The aim of this paper is to better understand the intersection of racism and ableism in the USA. Contributing to the growing literature at the intersection of philosophy of disability and critical philosophy of race, I (...) argue that theories concerning white supremacy should take more seriously the ways in which it functions as a process and apparatus of making abled and disabled. I conclude by discussing how understanding white supremacy in this manner is a valuable coalitional tool in fights for social justice. (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)

[This piece is written for those working in communication studies and in healthcare writ large, with the aim of bringing insights from disability studies and philosophy of disability to bear on discussion concerning disability in those fields.] Despite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still today structures many cases of patient–practitioner communication. (...) Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” of disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end. (shrink)

In this paper, I argue that the concept of normality in medical research and clinical practice is inextricable from the concept of ambiguity. I make this argument in the context of Edmund Pellegrino's call for a renewed reflection on medicine’s basic concepts and by drawing on work in critical disability studies concerning Deafness and body integrity identity disorder. If medical practitioners and philosophers of medicine wish to improve their understanding of the meaning of medicine as well as its concrete practice, (...) I contend that they should take seriously the import and centrality of ambiguity for biomedicine. (shrink)

Drawing upon the life and work of S. Kay Toombs, I explore the impact and import of phenomenological accounts of disability for the existentialist tradition. Through the case of multiple sclerosis, a noncongenital, late-onset, and degenerative disability, I show how the general structures that emerge from its lived experience largely support a mere-difference view of disability and highlight the need for an equitably habitable world. I further argue that phenomenological accounts of disability demonstrate accessibility to be the defining feature of (...) what it means to be embodied as we are. I conclude with a discussion of the more general philosophical relationship between disability, embodiment, and existentialism. (shrink)

The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions facing (...) medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the “common sense” of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart—and historically has thwarted—medicine from genuinely advancing justice . (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)

Most interpreters of Heidegger’s reflections on the body maintain that—whether early, middle, or late in the Gesamtausgabe—Dasein’s or the mortal’s openness to being/beyng is the ground of the fleshly or bodily (das Leibliche), but not the reverse. In this paper, I argue that there is evidence from Heidegger’s own oeuvre demonstrating that this relationship is instead mutually reciprocal. That is to say, I contend that corporeal variability is constitutive of Dasein’s openness to being just as Dasein’s openness to being is (...) constitutive of its corporeal variability. Understood in this way, Heidegger’s thinking puts forward what I call a corpoietic understanding of the body and of the meaning of ability. I show that, despite the ableist assumptions at play in much of Heidegger’s work, such an understanding is nevertheless grounded in the idea of access, a central concept in philosophy of disability and disability studies. After developing this idea of ability as access, I close by addressing the larger political stakes of using Heidegger’s work to think about embodiment and disability given the Third Reich’s mass slaughter of people with disabilities. (shrink)

In "Frailty Triage: Is Rationing Intensive Medical Treatment on the Grounds of Frailty Ethical?," Wilkinson (2021) argues that the use of frailty scores in ICU triage does not necessarily involve discrimination on the basis of disability. In support of this argument, he claims, “it is not the disability per se that the score is measuring – rather it is the underlying physiological and physical vulnerability." While we appreciate the attention Wilkinson explicitly pays to disability in this piece, we find the (...) distinction between disability and underlying vulnerability untenable both theoretically and practically. In this peer commentary, we begin with a brief overview of research in philosophy of disability concerning the meaning of the concept itself. We argue that this research demonstrates that many forms of disability do not involve underlying vulnerabilities, and, furthermore, that Wilkinson equivocates between "disability" understood as a medical category vs. "disability" understood as a feature of lived experience. We reject Wilkinson’s distinction on these grounds and offer further considerations to avoid disability discrimination in emergency and crisis standards of care contexts. (shrink)

Responding to Danaher et al. on self-tracking technologies, I argue that human lived experience is becoming increasingly mediated by generalized, statistical information, which I term our "infotality." Drawing on the work of Foucault, I argue that infotality is historically novel and best understood as the product of biopolitics, healthism, and informatics. I then critique the authors' "stance of cautious openness,” which misunderstands the aims of the technology in question and the fundamental ambiguity of the role information plays in the achievement (...) of human wellbeing. Self-tracking technologies are not primarily designed to change behavior; they are designed to create and sustain the desire for their use. I conclude by suggesting that infotality names a new way to fall for an old ruse: the promise that more information means more wellbeing. (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’. (shrink)

Drawing upon the practice of caregiving and the insights of feminist care ethics, I offer a phenomenology of caregiving through the work of Eva Feder Kittay and Emmanuel Lévinas. I argue that caregiving is a material dialectic of embodied response involving moments of leveling, attention, and interruption. In this light, the Levinasian opposition between responding to another's singularity and leveling it via parity-based principles is belied in the experience of care. Contra much of response ethics’ and care ethics’ respective literatures, (...) this dialectic suggests that they are complementary in ways that productively illuminate themes of each. I conclude by suggesting that when response and care ethics are thought together through the experience of caregiving, such labors produce finite responsibility with infinite hope. (shrink)

This short encyclopedia entry defines the concept of the normate.

Body Integrity Identity Disorder (BIID) is a very rare condition describing those with an intense desire or need to move from a state of ability to relative impairment, typically through the amputation of one or more limbs. In this paper, I draw upon research in critical disability studies and philosophy of disability to critique arguments based upon the principle of nonmaleficence against such surgery. I demonstrate how the action-relative concept of harm in such arguments relies upon suspect notions of biological (...) and statistical normality, and I contend that each fail to provide normative guidance. I then propose a critical theory of harm, one marked by substantive engagement with both empirical and reflective inquiry across the sciences, social sciences, and humanities. I conclude by discussing the implications of this theory and how it might enrich ongoing debates in bioethics, philosophy of disability, and the health humanities. (shrink)

In the essay “Cézanne’s Doubt,” Merleau-Ponty explores the relationship between Paul Cézanne’s art and his embodiment. The doubt in question is ultimately about the meaning of his disabilities. Should Cézanne’s disabilities or impairments shape how we interpret his art or should they instead be treated as incidental, as mere biographical data? Although Merleau-Ponty's essay isn’t intended to be phenomenological, its line of questioning is as much about lived experience as it is about art criticism, art history, and aesthetics. I here (...) offer a reading of “Cézanne’s Doubt” as an exploration of one of the more fundamental issues for phenomenological methodology: the relationship between normality and the normate. I first defend this phenomenological and disability-centric or crip reading of the essay. I then argue that insofar as one takes oneself to be “normal” and insofar as doing so underwrites phenomenological inquiry, the problematic of the normate, not just that of normality, is central to phenomenology. (shrink)

[This piece is written for those working in social gerontology and aging studies, with the aim of bringing insights from disability studies and philosophy of disability to bear on enduring debates in those fields.] The guiding question of humanistic age-studies—What does it mean to grow old?—cannot be answered without reflecting on disability. This is not simply because growing old invariably means becoming impaired in various ways, but also because the discriminations and stigmas involved in ageism are often rooted in ableism. (...) We here draw on research in the philosophy of disability as well as the interdisciplinary field of disability studies to explore the relationship between ageism and ableism. (shrink)

Since the completion of the human genome project in 2003, genomic sequencing, analysis, and interpretation have become staples of research in medicine and the life sciences more generally. While much ink has been spilled concerning genomics’ precipitous rise, there is little agreement among scholars concerning its meaning, both in general and with respect to our current moment. Some claim genomics is neither new, nor noteworthy; others claim it is a novel and worrisome instrument of newgenics. Contrary to the approaches of (...) Foucault scholars in both camps, in this paper I utilize research in philosophy of disability to argue that genomics is indeed noteworthy as a unique form of biopower and that its primary function is to precisify impairments in contradistinction to disability. I call the force at play in this process genopower. (shrink)

Merleau-Ponty claims that the idea of objective knowledge is supported by "our reveries." My aim in this paper is to explore this argument with respect to the idea of health. As a case study, I focus on bioethical issues surrounding return of results of incidental variants with respect to the use of genetic and genomic screening technologies (GSTs) in newborn and pediatric contexts. Drawing on a range of Merleau-Ponty’s texts, I argue that this case suggests the modern idea of health (...) to turn largely on the desire for control over one’s fate. More specifically, this is a desire for control aimed at assuring that the meaning of one’s life will stay the same as indexed by one’s ability expectations. I term this a desire for existential homeostasis. I further contend that the desire for existential homeostasis is underwritten by multiple sorts of privilege and, insofar as it informs health as a reverie, it is a desire that is particularly apt to contribute to and maintain injustice in both theory and practice. (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)

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)

This is the introduction to the inaugural issue of The Journal of Philosophy of Disability.

This chapter canvases a number of ways that issues surrounding disability intersect with social epistemology. We begin with a discussion of how social epistemology as a field and debates concerning epistemic injustice in particular would benefit from further (a) engaging the fields of disability studies and philosophy of disability and (b) more directly addressing the problem of ableism. In section two, we turn to issues of testimony, “intuitive horribleness,” and their relationship to debates concerning disability and well-being. We address how (...) the regular lack of uptake of disabled people’s testimony can lead to a number of structural rather than merely individual epistemic injustices, and we also consider how the very nature of some disabilities make testimonial issues more complicated. We conclude by discussing various norms of social interaction and how they can systematically disadvantage Autistic people in particular with respect to all the issues discussed herein. (shrink)

On 26 July 2016, Satoshi Uematsu murdered 19 and injured 26 at a caregiving facility in Sagamihara, Japan, making it the country’s worst mass killing since WWII. In this article, I offer an analysis of the Sagamihara 19 massacre. I draw on the work of Julia Kristeva and Emmanuel Levinas to argue that claims about disability experience are insufficient to justify normative projects. In short, disability is normatively ambiguous.

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability over the last fifty (...) years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

State violence against disabled people and Indigenous people as well as disabled Indigenous people has long been endemic in the US. Recent scholarship in philosophy of disability and disability studies rarely addresses the underlying issue that causes such state violence: settler-colonial conceptions of land. The aim of this article is to begin filling this gap in the literature. We detail settler colonial epistemologies and argue that the property relation underwrites operative concepts of accessibility dominant across disability theory. We show how (...) such concepts of accessibility are Lockean and thereby defined terms of the project of settler colonialism. We instead offer an Indigenized account of access, which we term deep access, that does not rely on the notion of Lockean property and that provides a coalitional path for Indigenous futures and disability justice. On our account, decolonization is and must be a deep access measure. (shrink)

The diagnostic category of borderline personality disorder (BPD) has come under increasing criticism in recent years. In this paper, we analyze the role and impact of epistemic injustice, specifically testimonial injustice, in relation to the diagnosis of BPD. We first offer a critical sociological and historical account, detailing and expanding a range of arguments that BPD is problematic nosologically. We then turn to explore the epistemic injustices that can result from a BPD diagnosis, showing how they can lead to experiences (...) of testimonial injustice which impede patient engagement in meaning-making activities, thereby undermining standard therapeutic goals. We conclude by showing how our arguments bolster ongoing efforts to replace the diagnostic category of BPD with alternatives such as complex post-traumatic stress disorder. (shrink)

In recent years, multiple authors have voiced discontent with the theoretical and practical neglect of the concept of ability. This includes, but is not limited to, philosophers of disability who have long assailed the implausible accounts of ability utilized by most social and political philosophers. Historically, most philosophers took it for granted that the meaning of ability will come easily, or is even a given, when higher-order questions are addressed. The aim of this chapter is to animate discussions about ability (...) trouble, which is to say, to animate (i) concern over the lack of philosophical inquiry that takes the concept of ability seriously as a problem in its own right and to animate (ii) novel interest in and further research on the concept of ability—and, correlatively, disability. We first analyze a famous argument concerning moral status that exemplifies how treating the concept of ability as a mere matter of common sense can lead philosophical inquiry awry. We then turn to the role of the concept of ability in an account that does, at least prima facie, take the concept seriously: Sen and Nussbaum’s capabilities approach. While better than common-sense approaches, we draw a cautionary tale, suggesting that even there the concept is simplified in theoretically and practically problematic ways. We conclude with a number of open questions offered in the hope of inspiring future non-ideal research on the topic. (shrink)

On January 30, 2020, the World Health Organization declared a Public Health Emergency of International Concern (PHEIC) over what would quickly become known as SARS-CoV- 2 or COVID- 19. This emergency status was officially ended in the United States in May 2023 amidst much dissent and debate. Although emergency conditions resulting from COVID- 19 will likely wax and wane over the coming years, there is good reason to think that the incidence of severe global pandemics will increase over the next (...) century, as will declarations of emergency. The declaration of an emergency calls for urgent action, but it just as urgently demands careful reflection. Official “emergency” status licenses unparalleled executive intervention, completely reorganizing the lives of those who live under its decree. Such official recognition, however, is heavily dependent on the social context in and from which the emergency arises. Highlighting which circumstances rise to the level of an official emergency clarifies our reigning assumptions about what threshold of active harm—and in relation to which groups of people—demands immediate intervention. (shrink)

In this paper, we highlight some problems for accounts of disability and enhancement that have not been sufficiently addressed in the literature. The reason, we contend, is that contemporary debates that seek to define, characterise or explain the normative valence of disability and enhancement do not pay sufficient attention to a wide range of cases, and the transition between one state and another. In section one, we provide seven cases that might count as disability or enhancement. We explain why each (...) case might count, and on what basis, and why it is been neglected. Each case is explained as a transition in what we call capacity space. We then argue that no definition of disability or enhancement addresses all of these cases, except for strict welfarist accounts of disability that do not rely on a depiction of any particular capacity. We argue further, however, that this is a serious deficiency of welfarist conceptions of disability. We then address objections to our account. (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)

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)

In this open peer commentary, we concur with the three target articles’ analysis and positions on abortion in the special issue on Roe v. Wade as the exercise of reproductive liberty essential for the bioethical commitment to patient autonomy and self-determination. Our proposed OPC augments that analysis by explicating more fully the concept crucial to Roe of fetal personhood. We explain that the development and use of predictive reproductive technologies over the fifty years since Roe has changed the literal image, (...) and thereby the epistemological landscape, through which a prospective parent comes to know the fetus. The logic of Roe required a legal and ethical denial of fetal personhood to prioritize maternal autonomy over claims to fetal moral personhood. Our claim is that such a denial may be more complicated today. The fetal person genetic testing and reproductive imaging now presents to prospective parents has become an increasingly individualized, distinct medicalized picture of a developing person with which a parent can either identify or differentiate. In contrast, the fetal person of Roe was an abstract and vague figure stripped of most human particulars, a pregnancy rather than the specific individualized human entity reproductive technology now presents as a person to prospective parents. We discuss the implications of this shift and call for a more capacious analysis of reproductive ethics that works towards both reproductive and disability justice. (shrink)

This paper argues that epistemic errors rooted in group- or identity- based biases, especially those pertaining to disability, are undertheorized in the literature on medical error. After sketching dominant taxonomies of medical error, we turn to the field of social epistemology to understand the role that epistemic schemas play in contributing to medical errors that disproportionately affect patients from marginalized social groups. We examine the effects of this unequal distribution through a detailed case study of ableism. There are four primary (...) mechanisms through which the epistemic schema of ableism distorts communication between nondisabled physicians and disabled patients: testimonial injustice, epistemic overconfidence, epistemic erasure, and epistemic derailing. Measures against epistemic injustices in general and against schema-based medical errors in particular are ultimately issues of justice that must be better addressed at all levels of health care practice. (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)

White progressives in the U.S. are currently experiencing two profound reckonings that typically are assumed to be unrelated. On the one hand, the Dobbs verdict overturned the assumption that the right to choose with respect to abortion is too socially entrenched, juridically settled, or politically sacred to be denied. On the other hand, climatological conditions of possibility for comfortable existence are increasingly under threat in locales in which residents have come to expect to enjoy secure lives and livelihoods. This essay (...) highlights what Indigenous communities across the U.S. already know well. Namely, threats to reproductive freedom and climate crisis are neither new nor separable. Both phenomena have common colonial roots that continue to proliferate. Each is a result of the disruption and destruction of Indigenous kinship assemblages. Indeed, in aiming to remediate their current reckonings, white progressives routinely (if unthinkingly) support forms of settler state violence that perpetuate reproductive and climate injustice in Indigenous communities. We appeal to white progressives, notably including white feminists, to embrace the proposition that their reckonings cannot be properly understood, nor successfully addressed without prioritizing Indigenous futurity. We call for centering forms of Indigenous feminist praxis that facilitate robust Indigenous coalitions of anti-colonial resistance. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

Joel Pust has recently challenged the Thomas Reid-inspired argument against the reliability of the a priori defended by Alvin Plantinga, Nicholas Wolterstorff, William Alston, and Michael Bergmann. The Reidian argument alleges that the Cartesian insistence on the primacy of a priori rationality and subjective sensory experience as the foundations of epistemic justification is unwarranted because the same kind of global skeptical scenario that Cartesians recognize as challenging the legitimacy of perceptual beliefs about the external world also undermine the (...) reliability of a priori rationality. In reply, Pust contends that some a priori propositions are beyond doubt and that fact can be used to support the overall reliability of reason. This paper challenges Pust’s argument. I argue that while Pust successfully undermines a radical skeptical view of reason, he does not refute a more modest skepticism. I conclude with some suggestions for Cartesian a priorists. (shrink)

An influential argument due to Elliott Sober, subsequently strengthened by Denis Walsh and Joel Pust, moves from plausible premises to the bold conclusion that natural selection cannot explain the traits of individual organisms. If the argument were sound, the explanatory scope of selection would depend, surprisingly, on metaphysical considerations concerning origin essentialism. I show that the Sober-Walsh-Pust argument rests on a flawed counterfactual criterion for explanatory relevance. I further show that a more defensible criterion for explanatory relevance recently proposed (...) by Michael Strevens lends support to the view that natural selection can be relevant to the explanation of individual traits. (shrink)