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)

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)

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)

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)

Criminalisation of prostitution, and minority rights for disabled persons, are important contemporary political issues. The article examines their intersection by analysing the conditions and arguments for making a legal exception for disabled persons to a general prohibition against purchasing sexual services. It explores the badness of prostitution, focusing on and discussing the argument that prostitution harms prostitutes, considers forms of regulation and the arguments for and against with emphasis on a liberty-based objection to prohibition, and finally presents and analyses three (...) arguments for a legal exception, based on sexual rights, beneficence, and luck egalitarianism, respectively. It concludes that although the general case for and against criminalisation is complicated there is a good case for a legal exception. (shrink)

Accounts of adaptive preferences are of two kinds: well-being accounts fully theorized for their own sake and political accounts theorized to facilitate the political project of reducing oppression and marginalization. Given their practical role, the latter are often less fully theorized, and are therefore less robust to theoretical criticism. In this paper, I first draw on well-being accounts to identify the well-theorized elements that political accounts should want to adopt in order to strengthen their project and avoid common criticisms. Second, (...) I appeal to the political project to show the shortcomings of the well-being accounts on which I draw. (shrink)

Much academic work (in philosophy, economics, law, etc.), as well as common sense, assumes that ill health reduces well-being. It is bad for a person to become sick, injured, disabled, etc. Empirical research, however, shows that people living with health problems report surprisingly high levels of well-being - in some cases as high as the self-reported well-being of healthy people. In this chapter, I explore the relationship between health and well-being. I argue that although we have good reason to believe (...) that health problems causing pain and death typically do reduce well-being, health problems that limit capabilities probably don't reduce well-being nearly as much as most people suppose. I then briefly explore the consequences of this conclusion for political philosophy and ethics. If many health problems don't significantly reduce well-being, why should governments go to great expense to prevent or treat them? Why should parents be obliged to ensure the health of their children? (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)

The “disability paradox” is the idea that for those who become severely disabled, their own quality of life assessment remains at or slightly below the QoL assessments of normal controls. This is a source of skepticism regarding third-person QoL judgments of the disabled. I argue here that this skepticism applies as well to those who are in the minimally conscious state. For rather simple means of sustaining an MCS patient’s life, the cost of being wrong that the patient would not (...) want further support is high. Pair this cost with the reason to be skeptical of third-person judgments, and my argument suggests not withholding food and water from MCS patients. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

Volume 24, Issue 8, August 2024, Page 40-42.

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

In Canada, there is interest in expanding medical assistance in dying (MAID) to include advance requests (AR) for people living with dementia (PLWD). However, operationalizing the intolerable suffering criterion for MAID in ARs for PLWD is complicated by the Canadian legal context—in which MAID is understood as a medical intervention and suffering is conceptualized as subjective—and the degenerative nature of dementia. ARs that express a wish to receive MAID when the PLWD develops pre-specified impairments are problematic because people are unlikely (...) to accurately predict the conditions that will cause intolerable suffering. ARs that express a wish to receive MAID when the PLWD exhibits pre-specified behaviors that likely represent suffering are problematic because they are inconsistent with the subjective conceptualization of suffering. Further research is required to determine whether adopting an objective conceptualization of suffering is justified in these cases and, if so, how to reliably identify intolerable suffering in PLWD. (shrink)

Some philosophers and disability advocates argue that disability is not bad for you. Rather than treated as a harm, it should be considered and even celebrated as just another manifestation of human diversity. Disability is mere difference. To most of us, these are extraordinary claims. Can they be defended?

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (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)