Adaptation to illness, and its relevance for distribution in health care, has been the subject of vigorous debate. In this paper I examine an aspect of this discussion that seems so far to have been overlooked: that some illnesses are difficult, or even impossible, to adapt to. This matters because adaptation reduces suffering. Illness severity is a priority setting criterion in several countries. When considering severity, we are interested in the extent to which an illness makes a person worse-off. I (...) argue that no plausible theory of well-being can disregard suffering when determining to what extent someone is worse-off in terms of health. We should accept, all else equal, that adapting to an illness makes the illness less severe by reducing suffering. Accepting a pluralist theory of well-being allows us to accept my argument, while still making room for the possibility that adaptation is sometimes, all things considered, bad. Finally, I argue that we should conceptualize adaptability as a feature of illness, and thereby account for adaptation on a group level for the purposes of priority setting. (shrink)

In this paper, I defend a version of the medical model of disability, which defines disability as an enduring biological dysfunction that causes its bearer a significant degree of impairment. We should accept the medical model, I argue, because it succeeds in capturing our judgments about what conditions do and do not qualify as disabilities, because it offers a compelling explanation for what makes a condition count as a disability, and because it justifies why the federal government should spend hundreds (...) of billions of dollars, annually, on aid and accommodations for disabled people. After responding to a pair of objections Elizabeth Barnes has raised against the medical model, I contrast it with Guy Kahane and Julian Savulescu's welfarist account of disability, and with Barnes's own mere-difference view. Both of these accounts face serious challenges, although elements of Barnes's view can—and, in my opinion, should—be adopted by proponents of the medical model. (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)

As reproductive genetic technologies advance, families have more options to choose what sort of child they want to have. Using preimplantation genetic diagnosis (PGD), for example, allows parents to evaluate several existing embryos before selecting which to implant via in vitro fertilization (IVF). One of the traits PGD can identify is genetic deafness, and hearing embryos are now preferentially selected around the globe using this method. Importantly, some Deaf families desire a deaf child, and PGD–IVF is also an option for (...) them. Selection for genetic deafness, however, encounters widespread disapproval in the hearing community, including mainstream philosophy and bioethics. In this paper I apply Elizabeth Barnes’ value-neutral model of disability as mere-difference to the case of selecting for deafness. I draw on evidence from Deaf Studies and Disability Studies to build an understanding of deafness, the Deaf community, and the circumstances relevant to reproductive choices that may obtain for some Deaf families. Selection for deafness, with deafness understood as mere-difference and valued for its cultural identity, need not necessitate impermissible moral harms. I thus advocate that it is sometimes morally permissible to select for deafness in one’s child. (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)

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the QALY trap and argues that all (...) are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination. (shrink)

I attempt to adjudicate the disagreement between those who seek to reconceptualize disability as mere difference and their opponents. I do so by reviewing a central conviction motivating the resistance, concerning the relationship between disability and well-being. I argue that the conviction depends on further considerations about the costs and extent of change involved in accommodating individuals with a particular disability trait. I conclude by considering three pay-offs of this clarification.

If it is within our power to provide a significantly better world for future generations at a comparatively small cost to ourselves, we have a strong moral reason to do so. One way of providing a significantly better world may involve replacing our species with something better. It is plausible that in the not‐too‐distant future, we will be able to create artificially intelligent creatures with whatever physical and psychological traits we choose. Granted this assumption, it is argued that we should (...) engineer our extinction so that our planet's resources can be devoted to making artificial creatures with better lives. (shrink)

The issue of whether biological and psychological properties associated with disability can be harmful, beneficial, or neutral brings up an important philosophical question about how we evaluate disability, and disability’s impact on well-being. The debate is usually characterized as between those who argue disability is intrinsically harmful, and disability rights advocates who argue that disability is just another way of being different, in part, because disability can also provide important benefits. I argue that this debate is a false one, as (...) neither view can capture the more complicated relationship between disability and well-being. I argue that many disabilities are best understood as a kind of pro-tanto extrinsic harm that is characterized in counterfactual terms. This means that our judgments concerning disability and harm must be context-sensitive. (shrink)

Guy Kahane and Julian Savulescu respond to my paper “Valuing Disability, Causing Disability” by arguing that my assessment of objections to the mere-difference view of disability is unconvincing and fails to explain their conviction that it is impermissible to cause disability. In reply, I argue that their response misconstrues, somewhat radically, both what I say in my paper and the commitments of the mere-difference view more generally. It also fails to adequately appreciate the unique epistemic factors present in philosophical discussions (...) of disability. (shrink)

We often find ourselves in situations where it is up to us to make decisions on behalf of others. How can we determine whether such decisions are morally justified, especially if those decisions may change who it is these others end up becoming? In this paper, I will evaluate one plausible kind of justification that may tempt us: we may want to justify our decision by appealing to the likelihood that the other person will be glad we made that specific (...) choice down the line. Although it is tempting, I ultimately argue that we should reject this sort of appeal as a plausible justification for the moral permissibility of our vicarious decisions. This is because the decisions that we make on behalf of another may affect the interests and values that that person will hold in the future. As I will show, this complicates the justificatory relationship between present decisions and future attitudes, since the latter can depend on the former. This is not to say that the predicted future attitudes of others can play no significant role in justifying our decisions on others’ behalf. Rather, appealing to the future attitudes in our moral justifications may play an important role in our practical thinking but only when we consider the future attitudes of all relevant possible futures. (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)

This paper argues that luck egalitarianism, especially in the guise of equality of opportunity for welfare, is in tension with the ideal of fair equality of opportunity in three ways. First, equal opportunity for welfare is compatible with a caste system in employment that is inconsistent with open competition for positions. Second, luck egalitarianism does not support hiring on the basis of qualifications. Third, amending luck egalitarianism to repair this problem requires abandoning fair access to qualifications. Insofar as luck egalitarianism (...) cannot support fair equality of opportunity, it cannot do justice to the claims of the disabled. Indeed, in the absence of fair equality of opportunity, disabled people are likely to be marginalized. (shrink)

Disabled people frequently find themselves in situations where their quality of life and wellbeing is being measured or judged by others, whether in decisions about health care provision or assessments for social supports. Recent debates about wellbeing and how it might be assessed (through subjective and/or objective measures) have prompted a renewed focus on disabled people’s wellbeing because of its seemingly ‘anomalous’ nature; that is, whilst to external (objective) observers the wellbeing of disabled people appears poor, based on subjective assessments, (...) people with disabilities report a good quality of life. In this paper, I examine an article by the philosopher Dan Moller in which he seeks to explain this ‘disability paradox’. Despite agreeing with his analysis that there is more to what people value than happiness, his explanation reflects some of the difficulties presented in philosophical accounts which seek to understand the lives of disabled people: this includes an analysis which fails to problematise definitions of wellbeing and who has the ‘voice’ to do the defining; which negates the multiple identities and subject positions that disabled people occupy; and which lacks recognition of the social contexts which mediate disabled people’s lives. I suggest that there is a need to incorporate disabled people’s voices into research which deepens our empirical knowledge about the relationship between impairment and wellbeing, including the social circumstances that shape disabled people’s agency. (shrink)

Journal of Social Philosophy, EarlyView.

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse off, apart from a non-accommodating environment; (...) (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

This paper will develop a set of concerns about a central feature of Ásta's account of social categories that she calls “conferralism.” I argue that generalist approaches to social categories such as Ásta provides are inadequate as a way of understanding the diverse formations of diverse categories, and that conferralism overemphasizes the power of top-down forces (what she calls “persons with standing”) to confer social identities. This approach then underplays the horizontal and bottom-up influences on category formation as well as (...) the historical formation of many social identities, especially ethnicity and race. Conferralism sets aside not only physical differences that play a role in some categories but also group-related historical experiences and practices that produce the “base properties” that justify the use of social identity categories. (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)

In this project I am concerned with the extent to which conceptual engineering happens in domains outside of philosophy, and if so, what that might look like. Specifically, I’ll argue that...

Big decisions in a person’s life often affect the preferences and standards of a good life which that person’s future self will develop after implementing her decision. This paper argues that in such cases the person might lack any reasons to choose one way rather than the other. Neither preference-based views nor happiness-based views of justified choice offer sufficient help here. The available options are not comparable in the relevant sense and there is no rational choice to make. Thus, ironically, (...) in many of a person’s most important decisions the idea of that person’s good seems to have no application. (shrink)

This article examines the cross-cultural bioethical concerns stemming from the potential use of CRISPR-Cas9 for genetic enhancement projects. It emphasizes the need to differentiate between basic and non-basic human rights when considering genetic enhancement, as recent international declarations lack this distinction. Basic rights possess a universal nature and are applicable across cultures, while non-basic rights are culturally specific and should be determined within respective regions. To illustrate this, the study explores the acceptance or rejection of non-basic rights related to genetic (...) enhancement in two distinct cultural categories: Type-A and Type-B cultures. Type-A cultures predominantly adhere to a liberal moral framework, while Type-B cultures are rooted in Confucian morality. Additionally, the article argues for two basic rights in genetic enhancement: the right to be free from bodily harm and the right to be free from deception. These rights differ from non-basic rights and should be universally upheld in all cultures. By analyzing a hypothetical case and drawing parallels with the He Jiankui incident, the article investigates the violation of these two basic rights in each scenario, regardless of cultural context. Consequently, both cases should be unequivocally rejected in both Type-A and Type-B cultures. (shrink)

In this paper, I argue that Jonathan Glover, a prominent advocate of human genetic engineering, relies on a limited naturalistic account of normal human function in his defense of genetic engineering as a means of decreasing future instances of disability. I show that his concept of disability and the normative argument informed by it in his Choosing Children: Genes, Disability, and Design fails to incorporate the phenomenological dimension of embodiment, and that this dimension should be included in any account of (...) disability and human flourishing. Such inclusion, however, requires us to consider seriously the counterintuitive view that racial minorities are constitutionally disabled in racist societies. (shrink)

People who have not experienced diseases and health conditions tend to judge them to be worse than they are reported to be by people who have experienced them. This phenomenon, known as the disability paradox, presents a challenge for health policy, and in particular, healthcare resource distribution. This divergence between patient and public preferences is most plausibly explained as a result of hedonic adaptation, a widespread phenomenon in which people tend to adapt fairly quickly to the state they are in, (...) good or bad, and adjust their baseline utility accordingly.If patient utilities can be shown to be inappropriate for use in public policy decision making, the disability paradox fades away. This paper offers a critique of one such attempt: the idea that adaptation leads to adaptive preferences. I argue that none of the main accounts of adaptive preferences in fact characterise adapted patient preferences as irrational. Adapted preferences should not, therefore, be treated as synonymous with adaptive preferences. I suggest that much patient adaptation should be understood as a form of the ubiquitous human ability to respond to environmental change. Consequently, we ought not to discount patient preferences. (shrink)

Does disability make a person worse off? I argue that the best answer is yes AND no, because we can be worse off in two conceptually distinct ways. Disabilities usually make us worse off in one way (typified by facing hassles) but not in the other (typified by facing loneliness). Acknowledging two conceptually distinct ways to be worse off has fundamental implications for philosophical theories of well-being. (This paper won the APA’s Routledge, Taylor & Francis Prize in 2017.).

Ten years ago, I was diagnosed with a rare illness called Myasthenia Gravis. Myasthenia Gravis is a long-term neuromuscular autoimmune disease where antibodies block or destroy specific receptors at the junction between nerve and muscle; hence, nerve impulses fail to trigger muscle contractions. The disease leads to varying degrees of muscle weakness. Currently, I have only minor symptoms, I am not seriously impaired, and I do not suffer from any social disadvantage because of my illness. Yet, my life and my (...) body since my diagnosis feel different than before. In this paper I aim to make this feeling intelligible and propose that it is a state of what I call ‘latent impairment’. Latent impairment is a state of being ‘in between’, different from being actually impaired and also different from being abled-bodied. The theory takes its cues both from social constructionist theories of disability as well as theories of (chronic) illness and their focus on the importance of subjectivity. Furthermore, I suggest that a phenomenological understanding of latent impairment can show possible ways of becoming an ally to the DRM. (shrink)

This article brings together two debates in bioethics more substantively than has been the case until now. One is the methodological debate over "principlism," i.e., the theoretical framework for analyzing and solving ethical problems proposed by Beauchamp and Childress in Principles of Biomedical Ethics. The other is the normative debate about reproductive ethics, i.e., procreative rights and obligations in a time of pervasive opportunities for making detailed choices about the properties and capacities of future people. The obvious point of bringing (...) the debates together is to show how they can illuminate each other in fruitful ways consistent with the method of reflective equilibrium endorsed in PBE. Furthermore, discussions of reproductive ethics is almost absent in PBE, making it an interesting "test case" on how principlist theory can have an impact on and be affected by confrontations with new practices and considerations in biomedicine. Reproductive ethics is especially interesting due to the so-called non-identity considerations, which pose a challenge to common morality views on harm to and respect for persons. My focus is mainly on some methodological points about the import of concrete normative discussions for formulating basic normative principles. However, I unfold a number of substantial points in order to demonstrate this. It is my impression that most writers on principlism underestimate the effect of engaging with concrete problems. Specifically, I conclude that reflecting on procreative obligations provides strong reasons for specifying the basic principles in ways that uncover new dimensions of them and not just new applications. _Key words: _principlism, reproductive ethics, non-identity problem, nonmaleficence, respect for persons. (shrink)