Bioethics promises a considered, unprejudicial approach to areas of medical decision-making. It does this, in theory, from the perspective of moral philosophy. But the promise of fairly considered, insightful commentary fails when word choices used in ethical arguments are prejudicial, foreclosing rather than opening an area of moral discourse. The problem is illustrated through an analysis of the language of The Royal Society Expert Panel Report: End of Life Decision Making advocating medical termination.

Bei der Bemühung um die Emanzipation von körperlich oder geistig beeinträchtigten Menschen kommt es häufig zu einer vehementen Kritik an einem "medizinischen Konzept" von Behinderung. Diesem wird aus Sicht einer "Bürgerrechtsperspektive" entgegengehalten, es gelte nicht, die Menschen zu korrigieren, sondern die Umwelt so zu verändern, dass Betroffene ungehindert am gesellschaftlichen Leben teilhaben können. Nach Auffassung der "Normalisierungskritik" sind es Stereotypen und Stigmata, die es Behinderten erschweren, ein selbstbestimmtes Leben zu führen. Beide Ansätze ignorieren oder bagatellisieren jedoch aus systematischen Gründen die (...) Art und Weise, in der Betroffene ihre physische oder psychische Schädigung subjektiv erfahren. Deshalb kann auch nicht auf die erheblichen Unterschiede reflektiert werden, die zwischen verschiedenen Formen der Behinderung bestehen. Es ist jedoch verfehlt, die Feststellung, dass Behinderte häufig in spezifischer Art bedürftig sind, mit paternalistischer Herablassung gleichzusetzen. Gerade für ein zuträgliches Verhältnis von Medizinern und Behinderten ist es wichtig, exakt jene Differenzen zu berücksichtigen, die zwischen akuten Krankheiten und verschiedenen Formen chronischer Beeinträchtigung bestehen. Nur so können Ärzte dazu veranlasst werden, von einer allzu "interventionsfreudigen" Haltung Abstand zu nehmen. (shrink)

Many believe that severe intellectual impairment, blindness or dying young amount to serious harm and disadvantage. It is also increasingly denied that it matters, from a moral point of view, whether something is biologically normal to humans. We show that these two claims are in serious tension. It is hard explain how, if we do not ascribe some deep moral significance to human nature or biological normality, we could distinguish severe intellectual impairment or blindness from the vast list of seemingly (...) innocent ways in which we fail to have as much wellbeing as we could, such not having super-intelligence, or not living to 130. We consider a range of attempts to draw this intuitive normative distinction without appealing to normality. These, we argue, all fail. But this doesn't mean that we cannot draw this distinction or that we must, implausibly, conclude that biological normality does possess an inherent moral importance. We argue that, despite appearances, it is not biological normality but rather statistical normality that, although lacking any intrinsic moral significance, nevertheless makes an important moral difference in ways that explain and largely justify the intuitive distinction. (shrink)

(2001). Disability: Societal Responses to Difference and Interdisciplinary Interventions by Bioethicists. The American Journal of Bioethics: Vol. 1, No. 3, pp. 62-63.

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)

(2001). A Neutral Ethical Framework for Understanding the Role of Disability in the Life Cycle. The American Journal of Bioethics: Vol. 1, No. 3, pp. 57-58.

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human (...) characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)

A rising number of patients require continuing or palliative services and this means that they will need to transition from one model of healthcare delivery to another. If it is generally recognised that patient vulnerability to inadequate services increases when the setting in which patient receives care changes, it is usually taken to be the result of poor coordination of services or personnel. Recognising that an integrated system is essential to adequate access, the point that I put forward in this (...) paper is that the centrality of acute care services affects the way in which chronic and palliative services are structured and, consequently, their availability. I argue that the problem originates in the manner in which some of the foundational concepts of the acute care model are imported into the other models of care delivery. In order to make this case, I review the three main models of healthcare service delivery by focusing my analysis along three axes: the goal of the care model; the predominant understanding of autonomy implicit in the model; and, the main actors in the care relationship. By examining how the various concepts translate from one model to the next, I discuss what I identify to be one of the main conceptual obstacles to less problematic transitioning, the notion of autonomy and the corresponding view of the patient as an isolated agent. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks. The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: rehabilitation and services for people with disabilities; chronic illness and cancer care; senior's health; community support services; children's health; health promotion; and mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (shrink)

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to HEC Forum’s (...) special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics’ relationship to both pediatric ethics and disability studies and introduces the issue’s five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles’ authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses to the disabled child. (shrink)

In this article I explore disability as far more than individual private tragedy, suggesting it has a social location and reproduction. Within this context we look at the power relations associated with bioethics and its largely uncritical use of the biomedical model. Within that context the topics of genetics, euthanasia, and biotechnology are explored. In examining these topics a social account of disability is proposed as rejected knowledge. Accordingly we explore the political nature of bioethics as a project.

Hastings Center Report, Volume 52, Issue 3, Page 37-48, May–June 2022.

(2001). Disability and Bioethics: Removing Barriers to Understanding and Setting the Agenda for a New Conversation. The American Journal of Bioethics: Vol. 1, No. 3, pp. 64-65.

(2001). How Long Has This Been Going On? Disability Issues, Disability Studies, and Bioethics. The American Journal of Bioethics: Vol. 1, No. 3, pp. 54-55.