Joel Michael Reynolds

[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.

[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.

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.

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.

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.

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.