Phenomenology provides a method for disability theorists to describe embodied subjectivity lacking within the social model of disability. Within the literature on body integrity identity disorder, dominant narratives of disability are influential, individual bodies are considered in isolation, and experiences of disabled people are omitted. Research on BIID tends to incorporate an individualist ontology. In this article, I argue that Merleau-Ponty's conceptualization of “being in the world,” which recognizes subjectivity as embodied and intersubjective, provides a better starting point for research (...) describing the experiences of those with BIID and amputees. (shrink)

In the helpful article “Why Bioethics Needs a Disability Moral Psychology,” Joseph Stramondo adds to the critique of actually existing bioethics and explains why disability activists and scholars so often find fault with the arguments of bioethicists. He is careful not to stereotype either community—rightly, given that bioethicists endorse positions as disparate as utilitarianism, deontology, virtue ethics, and feminist ethics, among others. Although Stramondo never explicitly mentions utilitarians or liberals, it seems probable that these are the main targets of his (...) discontent. The disability community, as he concedes, is also a broad church. Yet for this reason, I do not believe that you can read off positions on bioethics questions from either disability embodiment or disability organization affiliation. (shrink)

In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue in this way (...) have argued that disabilities like deafness unacceptably constrain a child’s opportunities. I argue, however, that this conclusion is premature for several reasons. Most importantly, we don’t have a good way of comparing opportunity sets. Thus, we can’t conclude that deaf children will grow up to have a constrained set of opportunities relative to hearing children. I conclude by suggesting that bioethicists and philosophers of disability need to spend more time thinking carefully about the relationship between disability and opportunity. (shrink)

From the standpoint of disability advocacy, further exploration of the concept of well-being stands to be availing. The notion that “welfarism” about disability, which Julian Savulescu and Guy Kahane debuted, qualifies as helpful is encouraged by their claim that welfarism shares important commitments with that advocacy. As becomes clear when they apply their welfarist frame to procreative decisions, endorsing welfarism would, in fact, sharply undermine it. Savulescu and Kahane's Principle of Procreative Beneficence—which reflects transhumanism, or advocacy of radical bioenhancement—morally requires (...) parents to choose the child who will, in all probability, have “the best life.” Assuming the emergence of potent biotechnologies, procreative decision-making would be highly standardized, for prospective parents would be morally obliged to maximize select capacities, including intelligence, self-control, and hedonic set-point, in their children. Welfarism, applied to reproduction, is staunchly objectivist about what course is incumbent on decision-makers, giving no credence to first-personal values, aspirations, and experiences. Though this dismissal of individual perspectives applies to everyone, its implications for disability advocacy are especially severe. With that advocacy in view, greater attention to “well-being” should, therefore, be severed from the welfarism of Savulescu and Kahane. (shrink)

Disorders of consciousness continue to profoundly challenge both families and medical professionals. Once a brain-injured patient has been stabilized, questions turn to the prospect of recovery. However, what “recovery” means in the context of patients with prolonged DOC is not always clear. Failure to recognize potential differences of interpretation—and the assumptions about the relationship between health and well-being that underlie these differences—can inhibit communication between surrogate decisionmakers and a patient’s clinical team, and make it difficult to establish the goals of (...) care. The authors examine the relationship between health and well-being as it pertains to patients with prolonged DOC. They argue that changes in awareness or other function should not be equated to changes in well-being, in the absence of a clear understanding of the constituents of well-being for that particular patient. The authors further maintain that a comprehensive conception of recovery for patients with prolonged DOC should incorporate aspects of both experienced well-being and evaluative well-being. (shrink)

Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of these patients? How are their lives going, for them? It has been argued that on a reasonable conception of well-being, these patients are faring so poorly that it may be in their best interests not to continue existing. I argue against this claim. Standard conceptions of well-being do not clearly support the (...) conclusion that these patients would be better off having life-sustaining treatment withdrawn, and in fact, it may be possible for these patients to retain a passable level of well-being. I suggest that further research into the subjective experiences of these patients will allow us to better promote their well-being. (shrink)

(2013). Acknowledging Levels of Racism in the Definition of “Difficult”. The American Journal of Bioethics: Vol. 13, No. 4, pp. 16-18. doi: 10.1080/15265161.2013.767964.

In this article I draw on two scenarios from my personal life—the diagnosis of my newborn grandnephew with CHARGE syndrome and the diagnosis of my father with depression—to reflect on whether and when diagnosis may be harmful to patients. Despite the great differences between the two scenarios, I argue that in both cases the tendency of diagnosis to generalize, categorize, and stigmatize can lead to insidious and counterproductive effects. The perspective of disability studies can help physicians to anticipate, minimize or (...) avoid these negative ramifications. I also reflect on the matter of who "owns" a particular diagnosis, whose purposes it serves, and how. (shrink)

The so-called Disability Paradox arises from the apparent tension between the popular view that disability leads to low well-being and the relatively high life-satisfaction reports of disabled people. Our aim in this essay is to make some progress toward dissolving this alleged paradox by exploring the relationship between disability and various “goods of life”—that is, components of a life that typically make a person’s life go better for her. We focus on four widely recognized goods of life (happiness, rewarding relationships, (...) knowledge, achievement) and four common types of disability (sensory, mobility, intellectual, and social) and systematically examine the extent to which the four disability types are in principle compatible with obtaining the four goods of life. Our findings suggest that that there is a high degree of compatibility. This undermines the widespread view that disabilities, by their very nature, substantially limit a person’s ability to access the goods of life, and it provides some guidance on how to dissolve the Disability Paradox. (shrink)

(2013). Pain, Chronic Pain, and Sickle Cell Chronic Pain. The American Journal of Bioethics: Vol. 13, No. 4, pp. 14-16. doi: 10.1080/15265161.2013.768859.

En estudios sobre economía de la salud es usual la utilización de las unidades de medida que ponderan la cantidad de años de vida esperados y la presencia de discapacidad (DALY) o la calidad de vida (QALY) durante dicho período. El objetivo de este trabajo es indagar en los supuestos y las consecuencias éticas del uso de estas unidades de medida como criterios de prioridad o desempate en decisiones de triaje durante la pandemia de COVID-19. Se abordará, en primer lugar, (...) las conexiones entre estas categorías y la perspectiva estándar de la calidad de vida de las personas con discapacidad, según la cual la calidad de vida tales personas son comparativamente inferior a la del resto. En segundo lugar, se argumentará que dicha perspectiva es errónea y que, cuando influye en decisiones de triaje, retroalimenta injusticias estructurales no permisibles desde un marco ético de equidad. Por último, se discutirá la representación de la profundización de los mecanismos que producen desigualdad e injusticia estructural como un período de crisis que justifica estados de emergencia, excepción y urgencia. Esto permitirá mostrar que focalizar únicamente en la necesidad de aplicar criterios individuales de prioridad o desempate en decisiones de triaje durante el COVID-19 se presenta bajo una retórica engañosa que esconde los procesos sistemáticos de exclusión y explotación que han producido gran parte de las condiciones que generan los dilemas del presente, y que obtura medidas integrales, colectivas y a largo plazo. (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)

Disability-positive philosophers often note a troubling tendency to dismiss what disabled people say about their well-being. This chapter seeks to get clearer on why this tendency might be troubling. It argues that recent appeals to lived experience, testimonial injustice, and certain challenges to adaptive-preference reasoning do not fully explain what is wrong with questioning the happiness of disabled people. It then argues that common attempts to debunk the claim that disabled people are happy are worrisome because they threaten everyone’s well-being (...) and are further challenged by an argument from moral risk. (shrink)

This article explores the Nuffield Council on Bioethics’ recent report about non-invasive prenatal testing. Given that such testing is likely to become the norm, it is important to question whether there should be some ethical parameters regarding its use. The article engages with the viewpoints of Jeff McMahan, Julian Savulescu, Stephen Wilkinson and other commentators on prenatal ethics. The authors argue that there are a variety of moral considerations that legitimately play a significant role with regard to (prospective) parental decision-making (...) in the context of NIPT, for example, views on the morality of abortion and understandings of the impact of disability on quality of life. The variable nature of such considerations, both singularly and combined, suggests that any approach to NIPT should be sensitive to and understanding of similarly variable parental assessments and decisions. The implications of the approach developed for current and future policies in this area are explored, along with the impact of such arguments on ideas about procreative beneficence. (shrink)