In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

In any normal population, health is unequally distributed across different age groups. Are such age-based health inequalities unjust? A divide has recently developed within egalitarian theories of...

This paper examines five groups of women that were instrumental in the emergence of the category of “feeblemindedness” in the United States. It analyzes the dynamics of oppression and power relations in the following five groups of women: “feebleminded” women, institutional caregivers, mothers, researchers, and reformists. Ultimately, I argue that a feminist analysis of the history of mental retardation is necessary to serve as a guide for future feminist work on cognitive disability.

This paper explores the interconnectedness of persons with disabilities, technologies and the environment by problematizing Western notions of the independent, autonomous subject. Drawing from Deleuze and Guattari’s reconfiguration of the static subject as active becoming, prevailing discourses valorizing independence are critiqued as contributing to the marginalization of bodies marked as disabled. Three examples of disability “dependencies”—man-dog, man-machine, and woman-woman connectivities—are used to illustrate that subjectivity is partial and transitory. Disability connectivity thus serves a signpost for an expanded understanding of subjectivity (...) and suggests a radically altered ethics that is no longer premised on individual rights. (shrink)

This Introduction to the collection of essays surveys the philosophical literature to date with respect to five central questions: justice, care, agency, metaphilosophical issues regarding the language and representation of cognitive disability, and personhood. These themes are discussed in relation to three specific conditions: intellectual and developmental disabilities, Alzheimer's disease, and autism, though the issues raised are relevant to a broad range of cognitive disabilities. The Introduction offers a brief historical overview of the treatment cognitive disability has received from philosophers, (...) and explains the specific challenges that cognitive disability poses to philosophy. In briefly summarizing the essays in the collection, it highlights the distinctive contributions the collection makes to ethics, political philosophy, bioethics, and the philosophy of disability. We hope that the richness of the topics explored by these essays will be a spur to further investigation. (shrink)

What does dependency reveal about human learning? All humans are dependent, largely because we are variously vulnerable and disabled at more than one stage in our lives. In this paper the subject of dependency is approached largely in the context of our vulnerable and disabled states, including in particular, states of profound disability. The primary contention is that our dependent states should feature in accounts of how we learn, and of relations between learner and teacher, in ways that compare with (...) the attention given to personal autonomy and independence. (shrink)

Using Judith Butler's notion that bodies are materialized via performances, “resig-nifying” disability involves a “democratizing contestation” of staircases because they exclude those in wheelchairs. Paleoanthropologist Maxine Sheets-Johnstone shows how consistent bipedal locomotion, together with the knowledge that we will die, are ingredients of our pan-hominid speciation, not contingent constructions. As axiologically important as contestation is, it forecloses the possibility of achieving a mutuality with others that is wonderfully possible.

Medical technologies and assistive devices such as ventilators and power wheelchairs are designed to sustain life and/or improve functionality but they can also contribute to stigmatization and social exclusion. In this paper, drawing from a study of ten men with Duchenne muscular dystrophy, we explore the complex social processes that mediate the lives of persons who are dependent on multiple medical and assistive technologies. In doing so we consider the embodied and emplaced nature of disability and how life is lived (...) through bodies coupled with technologies and experienced as 'techno-body-subjects in situ'. Normative implications for theory and research, including bioethics research, are discussed. (shrink)

I explore the usefulness of Martha Nussbaum's capabilities approach in regard to the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims at empowering people with disabilities by granting them a number of civil and political, but also economic, social and cultural rights. Implementing the CRPD will clearly be politically challenging and also very expensive for states. Thus, questions might arise as to whether the requirements set in the CRPD can be justified from an ethical perspective. (...) I will first investigate if Nussbaum's capabilities approach provides support for the rights claimed in the CRPD. Second, I will investigate to what extent Nussbaum's capabilities approach is a useful tool to set priorities among rights in the course of the implementation of the convention. This is an urgent question because seen realistically, it will not be possible to realize all rights at once and thus some rights need to receive greater priority than others. I will argue that the capabilities approach can be regarded as supporting the rights specified in the CRPD, but that it proves unable to guide the implementation process due to an insufficient grounding of the capabilities. Employing the capabilities approach thus leads to only limited results. (shrink)

The author explores disability in K-12 schools where attitudes, beliefs, and practices shape the school culture and influence enduring perceptions about disability among school professionals, students, and their families. Drawing on recent conversations among moral philosophers who view disability as a central feature of human life that has yet to enrich understanding of ourselves and others, the author encourages the practice of reform grounded in a process that begins with a “suspicion of the self” and a willingness to risk the (...) personal. (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)