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)

The COVID-19 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)

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)

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)

Insofar as many older adults fit some definition of disability, disability studies and gerontology would seem to have common interests and goals. However, there has been little discussion between these fields. The aim of this paper is to open up the insights of disability studies as well as philosophy of disability to discussions in gerontology. In doing so, I hope to contribute to thinking about the good life in late life by more critically reflecting upon the meaning of the body, (...) ability, and the variability of each. My central argument is that we should conceptualize age‐associated bodily variations and abilities not in terms of individual capacity, but in terms of what I call “the extended body.” It is in light of the meaning of embodiment and ability in general that we must think differently and more capaciously about the meaning of late life in particular. (shrink)

The 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. Acknowledgments. Notes. Bibliography. Index. (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. In this paper, I argue that the foundational question of continental philosophy of disability is the question of the meaning of ability. 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 a problem of cruelty and dehumanization. (shrink)

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 more generally. (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. [Forthcoming in Volume 53, Issue 1 (Jan-Feb), 2023, of The Hastings Center Report]. (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)

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 "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)

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)

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)

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)

The article introduces readers to the study of disability, both with respect to the interdisciplinary field of disability studies and the field of philosophy of disability. We then offer an overview of three central areas of philosophical inquiry where feminist work in philosophy and disability has made significant contributions: (1) metaphysics and ontology, (2) epistemology and phenomenology, and (3) ethical, social, and political philosophy.

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 more broadly. (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’.1 Disability studies scholars and philosophers of disability have long noted that certain types of disability are often ‘left …. (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)

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)

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)

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)

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

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)

In lieu of an abstract, an excerpt: "The idea of the life worth living is as old as human thought. Pick your tradition or epoch; whether it is characterized as religious, philosophical, ethnic, or cultural, one finds a constant: humans are in the business of distinguishing the good from the merely extant, the what-should-be from the what-is. A staggeringly wide swath of intellectual and religious traditions across the ages agrees on this point: organisms like us are not content with how (...) we find ourselves in the world. We instead strive to refashion our surroundings, to make new worlds, and to dream of, even worship, what might be. Nonetheless, often we tightly tie the good, the desirable, and even the stakes of the divine to the state of our bodies: how our bodies are, how we work or fail to work upon them, and how they fit or misfit, to invoke Rosemarie Garland-Thomson’s sense of the term. It is human to link worth with body and body with worth. To be sure, I do not mean 'body' in contradistinction to 'mind.' Put better, then: it is human, all too human, to link worth with bodymind." . (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)

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)

[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)

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)

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, 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)

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)

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)

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.

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

[Excerpt]: Bioethics has an uneasy relationship with embodiment. Only with vigilance does knowledge of the body as it is lived counterbalance the momentous inertia of knowledge of the body as an object brought about by modern medical sciences. As a field tethered to detached, technical ways of knowing the world, bioethics must toil to treat the body as more than mere material and machine. To be more is, among other things, to be social—to live in the thickets of interdependence and (...) the institutions and practices we build, hone, and defend to facilitate it. I take this tension to define the ultimate stakes of Melinda Hall's The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics. Hall homes in on transhumanism, the idea that we should embrace technology to vault beyond current human limitations. Yet the work serves as a reminder for all bioethicists and philosophers of how easily one can be led astray by otherwise irreproachable values when they are disconnected from the conditions and realities of human life, including being irremediably interdependent embodied beings. Put more acerbically, the book is a reminder of how thinking goes wrong when divorced from the principal sources out of which human appraisals emerge: our fleshy, messy, social bodies. (shrink)

In this paper, I argue that clinically-oriented practical and theoretical approaches to the problem of pain should more carefully heed narrative and phenomenological research. I begin with the work of S. Kay Toombs, contending that her phenomenological account of multiple sclerosis demonstrates how a degenerative condition attendant with pain ultimately effect a constriction of one’s world. Drawing upon two of artist Yosl Bergner’s depictions of the story, I then present a reading of Kafka’s “The Vulture” as a literary account of (...) the constrictive movement of acute, localized pain to chronic, systemic pain. I conclude by discussing the implications of literary and phenomenological accounts of pain for its diagnosis, management, and treatment. (shrink)

[Excerpt]: In the nonideal world against which philosophical ideas and ideals are tried, suffering is distributed unequally. A central, if not defining, question for many late-twentieth-century feminist ethicists is how and why so many forms of suffering are distributed by virtue of bodily difference. For over four decades, disability studies, a multidisciplinary field spanning the humanities and social sciences, has principally revolved around a basic question: is the concept of "disability" constructed like "race," "gender," or "sexuality"? In other words, is (...) it as much a construct as any category historically deployed to justify socially produced sufferings, inequities, and hierarchies and to disenfranchise, stigmatize, and... (shrink)

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)

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)

[Excerpt]: German philosopher Martin Heidegger argued that humans are defined by care. The term he used, “Sorge,” picks out a wide range of caring relations, including sorrow, worry, the making of arrangements, and even fending for another. Since coming to The Hastings Center, I've been struck by the genuine care definitive of its scholars’ relationship to their work. Care about newborns, the elderly, and nonhuman animals. Care about doctors, nurses, and health care institutions. Care expressed in the panoply of ways (...) biomedical knowledge and practices inform our havings, doings, and beings in the world. Perhaps in its better moments, bioethics just is care work. (shrink)