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)

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)

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)

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)

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. (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)

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)

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.

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)

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)

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 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)

[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 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 chapter canvases a number of ways that issues surrounding disability intersect with social epistemology, particularly how dominate norms concerning communication and ability can epistemically disadvantage some disabled individuals. We begin with a discussion of how social epistemology as a field and debates concerning epistemic injustice in particular fail to take the problem of ableism seriously. In section two, we analyze the concept of an individual’s “knowledge capacity,” arguing that it can easily misconstrue the extended, social nature of both knowledge (...) and capacity/ability. In section three, we turn to issues of testimony and their relation 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. In our fourth and final section, we discuss various norms of social interaction and how they can systematically disadvantage Autistic people in particular. (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)

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 contemporary, liberal “velvet eugenics.” 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. Insofar as genopower gears into powerful cultural tropes of self-knowledge and self-care and affirms individualistic solutions to social issues, the socio-political effect of genomics with respect to disability—despite the aims of many of its practitioners—is indeed to normalize what Rosemarie Garland-Thomson calls “velvet eugenics.”. (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)

Most interpretations 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 proffers what I call a corpoietic understanding of the body and of the meaning of ability, and I show that such an understanding is 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)

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)

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.

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)

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)