This short encyclopedia entry defines the concept of the normate.

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more specific clusters (...) of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (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)

Disabled people face obstacles to participation in epistemic communities that would be beneficial for making sense of our experiences and are susceptible to epistemic oppression. Knowledge and skills grounded in disabled people's experiences are treated as unintelligible within an ableist hermeneutic, specifically, the dominant conception of disability as lack. My discussion will focus on a few types of epistemic oppression—willful hermeneutical ignorance, epistemic exploitation, and epistemic imperialism—as they manifest in some bioethicists’ claims about and interactions with disabled people. One of (...) the problems with the epistemic phenomena with which I am concerned is that they direct our skepticism regarding claims and justifications in the wrong direction. When we ought to be asking dominantly situated epistemic agents to justify their knowledge claims, our attention is instead directed toward skepticism regarding the accounts of marginally situated agents who are actually in a better position to know. I conclude by discussing disabled knowers’ responses to epistemic oppression, including articulating the epistemic harm they have undergone as well as ways of creating resistant ways of knowing. (shrink)

BackgroundThe expectation of pandemic-induced severe resource shortages has prompted authorities to draft and update frameworks to guide clinical decision-making and patient triage. While these documents differ in scope, they share a utilitarian focus on the maximization of benefit. This utilitarian view necessarily marginalizes certain groups, in particular individuals with increased medical needs.Main bodyHere, we posit that engagement with the disability critique demands that we broaden our understandings of justice and fairness in clinical decision-making and patient triage. We propose the capabilities (...) theory, which recognizes that justice requires a range of positive capabilities/freedoms conducive to the achievement of meaningful life goals, as a means to do so. Informed by a disability rights critique of the clinical response to the pandemic, we offer direction for the construction of future clinical triage protocols which will avoid ableist biases by incorporating a broader apprehension of what it means to be human.ConclusionThe clinical pandemic response, codified across triage protocols, should embrace a form of justice which incorporates a vision of pluralistic human capabilities and a valuing of positive freedoms. (shrink)

Berger and Miller assert that race and ethnicity based cultural competence is a failure because medicine grounds its conceptualization of cultural competence on a “flawed” understanding of r...

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘What’s the problem represented to be’. It argues (...) that the FDA presents its approval as an argument for equity of access to the treatment, describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability. (shrink)

The paper aims to present a critical analysis of the phenomenon and notion of exceptionalism in bioethics. The authors demonstrate that exceptionalism pertains to phenomena that are not (yet) entirely familiar to us and could potentially bear risks regarding their regulation. After an overview of the state of the art, we briefly describe the origins and evolution of the concept, compared to exception and exclusion. In the second step, they look at the overall development debates on genetic exceptionalism, compared to (...) other bioethical debates on exceptionalism, before presenting a detailed analysis of a specific case of early regulation of genetic screening. In the last part, the authors explain the historical background behind the connection between exceptionalism and exclusion in these debates. Their main conclusion is that while the initial stage of the discussion is shaped by the concept of exceptionalism and awareness of risks of exclusion, the later development centers around exceptions that are needed in detailed regulatory procedures. (shrink)

A diverse group of scholars reflect on the scholarship of Robert M. Veatch, the breadth of which is unmatched in modern day bioethics. Essays were written by both philosophers and clinician-philosophers, by contemporaries and mentees. They span the breadth of Bob’s work and include analyses of his ideas about death, dying and organ transplantation, human experimentation and research ethics, disability, equality and justice, the doctor-patient relationship, the history of bioethics, as well as his pedagogical approach to teaching bioethics to clinicians (...) across the health care spectrum. Recognition of Bob’s influence in the modern field of bioethics and the challenges that persist are clearly identified. (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)

Individuals with chronic spinal cord injury (CSCI) require complex and lengthy health services based on ethical philosophy. The virtue character that is most relevant to the egalitarian concept is fairness. The aim of the study is whether the character of fairness becomes the character of a doctor serving individuals with CSCI. It is a mixed method cross-sectional explanatory study, with questionnaires sent to doctors and individuals with CSCI, interviews with doctors, and healthcare system field observation. Sixty-two doctors and 33 patients (...) with CSCI participated in the study. The virtues most frequently chosen by doctors were love, gratitude, spirituality, zest, fairness, and kindness. The CSCI patients’ views regarding doctors’ characters were a postponement of personal interest, compassion, and loyalty to trust. All interviewed doctors indicated that they supported more than five of the 24 virtues. Doctors serve with ethical principles of virtue, even though the rewards received are inadequate. In fact, the use of health services by CSCI is still limited. Virtue ethics, especially the character of fairness, is necessary as a base of positive relationships between doctors and patients, to achieve equality of benefits for CSCI patients. Data obtained that the doctors’ character of fairness is still not the main choice. (shrink)

This paper examines prosthetic technology in the context of posthumanism and disability studies. The following research discusses the posthuman subject in contemporary times, focusing on prosthetic applications to deliberate how the disabled body is empowered through prosthetic enhancement and cultural representations. The disability market both intersects and transcends race, religion, and gender; the promise of technology bettering the human condition is its ultimate product. Bionic technology, in particular, is a burgeoning field; our engineering skills already show promise of a future (...) where physical impediment will be almost obsolete. I aim to cross-examine empowering marketing images and phrases embedded in cinema and media that emphasize how disability becomes super-ability with prosthetic enhancement. Though the benefits of biotechnology are most empowering to the disabled population, further scrutiny raises a number of paradoxical questions exposed by the market’s advance. With all these tools at our disposal, why is it that the disabled have yet to reap the rewards? How are disabled bodies, biotechnology, and posthuman possibilities commodified and commercialized? Most importantly, what impact will this have on our society? This paper exemplifies empowering and inclusive messages emphasized in disabled representation, as well as raising bioethical concerns that fuel the ongoing debate of the technological haves and have-nots. Furthermore, this paper challenges the ideals of normative bodies while depicting the disabled as an open, embodied site where technology, corporeality, and sociology interact. To conclude, I believe that an interdisciplinary approach that balances the debate between scientific advance, capital gain, and social equality is essential to embracing diverse forms of embodiment. (shrink)

We agree with Berger and Miller that the focus on cultural competence in medical education fails to name or confront key drivers of health inequity such as structural racism, social determin...

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)

Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term “social bioethics.” Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social discourse. As an exemplar, the authors (...) use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare. (shrink)