The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the second (...) by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

In recent years, bioethical discourse around the topic of ‘genetic enhancement’ has become increasingly politicized. We fear there is too much focus on the semantic question of whether we should call particular practices and emerging bio-technologies such as CRISPR ‘eugenics’, rather than the more important question of how we should view them from the perspective of ethics and policy. Here, we address the question of whether ‘eugenics’ can be defended and how proponents and critics of enhancement should engage with each (...) other. (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)

Many endorse the Bad-Difference View of disability which says that disability makes one likely to be worse off even in the absence of discrimination against the disabled. Others defend the Mere-Difference View of disability which says that, discounting discrimination, disability does not make one likely to be worse off. A common motivation for the BDV is the Options Argument which identifies reduction in valuable options as a harm of disability. Some reject this argument, arguing that disabled people's prospects aren't hindered (...) by having fewer options. In this article, I defend the Options Argument by arguing that, in disability cases, possessing a greater number of valuable options seems to overall improve well-being prospects. As such, the Options Argument appears to be sound and – although it doesn't establish the BDV – it lends plausibility to the BDV by identifying a potentially significant cost of disability. (shrink)

The Bad-Difference View of disability says, roughly, that disability makes one worse off. The Mere-Difference View of disability says, roughly, that it doesn’t. In recent work, Barnes – a MDV proponent – offers a detailed exposition of the MDV. No BDV proponent has done the same. While many thinkers make it clear that they endorse a BDV, they don’t carefully articulate their view. In this paper, I clarify the nature of the BDV. I argue that its best interpretation is probabilistic (...) and comparative: it is the view that a person is likely to be, all things considered, worse off with a disability than without. As such, Barnes – who criticises the version of the BDV that disability by itself, intrinsically or automatically makes a person worse off – misses an opportunity to attack the most plausible and relevant version of the BDV, and the best version remains unchallenged. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of QALYs gained through particular (...) interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (shrink)

Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. Inthis (...) case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories. (shrink)

This paper argues that the field of philosophy, and bioethics spe­cifically, engages in a series of speech acts that identify scholarship advocating for increased philosophical engagement with the experiences of disability as “activism.” In doing so, the field of philosophy treats these calls as not worthy of consideration, and therefore, to be ignored in “serious scholarship.” Further, this paper makes clear the ways that philosophy relies upon ableism through what Peter Railton calls the “culture of smartness,” which serves as a (...) form of ableist apologia as defined by Jay Dolmage. The paper concludes by using the example of ADHD to indicate how the prevalence of this “culture of smartness” serves to exclude disabled philosophers within the field. (shrink)

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

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)

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)

Science and technology, including nanoscale science and technology, influences and is influenced by various discourses and areas of action. Ableism is one concept and ability expectation is one dynamic that impacts the direction, vision, and application of nanoscale science and technology and vice versa. At the same time, policy documents that involve or relate to disabled people exhibit ability expectations of disabled people. The authors present ability expectations exhibited within two science and technology direction documents from Asia, as well as (...) in two policy documents generated and influenced by disabled people from Asia. As well, the authors discuss the impact of the ability expectations exhibited in these four documents with respect to the relationship between science and technology and disabled people. (shrink)