Deliberative democracy harbors a recurrent tension between full inclusion and intelligible speech. People with profound cognitive disabilities often signify this tension. While liberal deliberative theorists sacrifice inclusion for intelligibility, this exclusion is unnecessary. Instead, by analyzing deliberative locations that already include people with disabilities, I offer two ways to revise deliberative norms. First, the physical presence of disabled bodies expands the value of publicity in deliberative democracy, demonstrating that the publicity of bodies provokes new conversations similar to rational speech acts. (...) Second, the inclusion of people with profound disabilities necessitates a form of collaborative speech in which individuals make claims collaboratively. Habermas offers an ideal site to pursue this analysis because he recognizes the theoretical tension between inclusion and intelligibility and because his personal testimony reveals important insight into the lived experience of disability. (shrink)

Robert Veatch’s The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality delves into deep questions of justice through the case of a child with disabilities. I describe what is basically right about this vision, as well as what is problematic from the standpoint of contemporary disability bioethics. From there, I dive into the notion of vulnerability that is at play in his work. He describes disability as necessarily a condition of weakness, lesser-than existence, (...) and neediness. When disability is viewed in this way as an inherently vulnerable state of being, the essential sociopolitical dimensions of disability receive inadequate attention, which, in turn, makes it impossible to identify injustices correctly. I connect these points to concrete challenges faced by disability communities during the COVID-19 pandemic, which have raised profound questions about the just use of scarce critical care resources. Any case drawn from the pandemic is a very different kind of case than that of the child in Veatch’s book, but a commonality is the question of who should get what limited resources when needs and urgency vary. (shrink)

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

The untimely passing of Reverend Canon Dr Christopher Newell, AM, came as a shock to many in the bioethics world. As well as an obituary, this article notes a number of important themes in his work, and provides a select bibliography. Christopher's major contribution to this field is that he was one of a handful of scholars who made disability not only an acceptable area of bioethics—indeed a vital, central, fertile area of enquiry. Crucially Christopher emphasised that where we do (...) ethics is actually in everyday life—while we mourn his passing, his rich work and example will continue to inspire bioethical inquiry. (shrink)

In the polarized debates about abortion and voluntary euthanasia, disability advocates, who normally align with left-wing social forces, have tended to side with conservative and religious voices in expressing concerns about the impact of technological and sociopolitical developments on disabled futures. This paper draws on the social model of disability and the virtue ethics tradition to explain the alignment between the religious and disability perspectives, and the theory of transformative choice to highlight the limits and biases of the pro-choice logic. (...) Yet, it also recognizes the inherent contradiction of disabled advocates taking a paternalistic position against the personal agency of women and people facing terminal illnesses. A disability perspective serves the discussion of abortion and euthanasia as an encouragement to work together for the building of a society that enables people with diverse disabilities to exist and flourish, and helps pregnant women, people facing disabling and terminal illnesses, and politicians and social influencers to make informed choices. (shrink)

This article explores how meanings around risk, health/safety, and workers’ bodies are constructed in an academic context. I do so through the study of a single academic in Australia who sustained a back injury at work. Through an analysis of in-depth interviews and documents, I attempt to show the embodied experience of an injured worker’s struggle for care, recovery, and survival in the neoliberal academy. Writing from the nexus of workplace health and safety and critical management literatures, the raw testimony (...) of this injured academic lays bare the violences that are enabled within a wider culture of self-discipline, individualism, and performativity in the university. The story presented in this article exposes how physiological and psychological injuries can be exacerbated through the very health and safety procedures that are designed to prevent and alleviate harm. Please note that this article contains references to suicide and suicidal ideation. (shrink)

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) (...) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals. (shrink)

The call for a narrative medicine has been touted as the cure-all for an increasingly mechanical medicine. It has been claimed that the humanities might create more empathic, reflective, professional and trustworthy doctors. In other words, we can once again humanise medicine through the addition of humanities. In this essay, I explore how the humanities, particularly narrative medicine, appeals to the metaphysical commitments of the medical institution in order to find its justification, and in so doing, perpetuates a dualism of (...) humanity that would have humanism as the counterpoint to the biopsychosociologisms of our day. (shrink)