This article analyses the phenomenon of epistemic injustice within contemporary healthcare. We begin by detailing the persistent complaints patients make about their testimonial frustration and hermeneutical marginalization, and the negative impact this has on their care. We offer an epistemic analysis of this problem using Miranda Fricker's account of epistemic injustice. We detail two types of epistemic injustice, testimonial and hermeneutical, and identify the negative stereotypes and structural features of modern healthcare practices that generate them. We claim that these stereotypes (...) and structural features render ill persons especially vulnerable to these two types of epistemic injustice. We end by proposing five avenues for further work on epistemic injustice in healthcare. (shrink)

It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, though we cannot (...) make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (shrink)

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

Any defense of universal norms involves drawing distinctions among the many things people actually desire. If it is to have any content at all, it will say that some objects of desire are more central than others for political purposes, more indispensable to a human being's quality of life. Any wise such approach will go even further, holding that some existing preferences are actually bad bases for social policy. The list of Central Human Capabilities that forms the core of my (...) political project contains many functions that many people over the ages have preferred not to grant to women, either not at all, or not on a basis of equality. To insist on their centrality is thus to go against preferences that have considerable depth and breadth in traditions of male power. Moreover, the list contains many items that women over the ages have not wanted for themselves, and some that even today many women do not pursue – so in putting the list at the center of a normative political project aimed at providing the philosophical underpinning for basic political principles, we are going against not just other people's preferences about women, but, more controversially, against many preferences (or so it seems) of women about themselves and their lives. To some extent, my approach, like Sen's, avoids these problems of paternalism by insisting that the political goal is capability, not actual functioning, and by dwelling on the central importance of choice as a good. But the notion of choice and practical reason used in the list is a normative notion, emphasizing the critical activity of reason in a way that does not reflect the actual use of reason in many lives. (shrink)

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by loss of (...) mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (shrink)

Chronic illness is a major cause of disability, especially in women. Therefore, any adequate feminist understanding of disability must encompass chronic illnesses. I argue that there are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability and feminist politics, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and “cure” of disabilities.

It is sometimes said that a society should be judged ethically by how it treats its least-fortunate or worst-off members. In one interpretation this is not a point about justice, but instead about moral virtues such as compassion and charity. In our response to the least fortunate among us, we display, or show that we lack, fundamental moral virtues of fellow feeling and concern for others in need. In a different interpretation, however, this point is about justice and a just (...) society—the justice of a society is shown especially in how it treats its least-fortunate members. (shrink)

With its implicit vilification of materiality, the notion of objectification has failed to produce a coherent and effective ethical analysis of heterosexual sex work. The concept of derivatization, grounded in an Irigarayan model of embodied intersubjectivity, is more effective. However, queer sex work poses new and different ethical challenges. This paper argues that although queer sex work can entail both objectification and derivatization, the former is not ethically objectionable, and the latter, although the cause for some justified ethical concern, must (...) be analyzed within the context of structural sexual injustice. (shrink)

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)

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on the QALY scale, below that of (...) someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it. (shrink)

The paper proposes a new method of researching public opinion for the purposes of valuing the outcomes of healthcare interventions. The issue I address is that, under the quality-adjusted life-year system, disabled patients face a higher cost-effectiveness hurdle than able-bodied patients. This seems inequitable. The author considers the alternative approaches to valuing healthcare interventions that have been proposed, and shows that all of them face the same problem. It is proposed that to value an outcome, instead of researching the general (...) public, the population that is to be targeted with the intervention should be researched. (shrink)

Cost effectiveness analysis is a tool for evaluating the aggregate benefits of medical treatments, health care services, and public health programs. Its opponents often claim that its use leads to unfair discrimination against people with disabilities. My aim in this paper is to clarify the conditions under which this might be so. I present some ways in which the use of cost effectiveness analysis can lead to discrimination and suggest why these forms of discrimination may be unfair. I also discuss (...) some proposals for avoiding discrimination without rejecting cost effectiveness analysis altogether. I argue that none of these proposals is ultimately convincing. I describe a different approach to the problem and conclude by answering the question in the title. (shrink)