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)

Body Integrity Identity Disorder (BIID) is a very rare condition describing those with an intense desire or need to move from a state of ability to relative impairment, typically through the amputation of one or more limbs. In this paper, I draw upon research in critical disability studies and philosophy of disability to critique arguments based upon the principle of nonmaleficence against such surgery. I demonstrate how the action-relative concept of harm in such arguments relies upon suspect notions of biological (...) and statistical normality, and I contend that each fail to provide normative guidance. I then propose a critical theory of harm, one marked by substantive engagement with both empirical and reflective inquiry across the sciences, social sciences, and humanities. I conclude by discussing the implications of this theory and how it might enrich ongoing debates in bioethics, philosophy of disability, and the health humanities. (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 develops the concept of wrongful depathologization, in which a psychiatric disorder is simultaneously stigmatized and trivialized. We use OCD as a case study to argue that cumulatively these two effects generate a profound epistemic injustice to OCD sufferers, and possibly to those with other mental disorders. We show that even seemingly positive stereotypes attached to mental disorders give rise to both testimonial injustice and wilful hermeneutical ignorance. We thus expose an insidious form of epistemic harm that has been (...) overlooked in the literature. (shrink)

With regard to recent historical developments, the Social Model has been of enormous emancipatory significance, chiefly as a counter-agent against rigid definitions of dis-/ability and the traditional role (marked by misfortune) imposed on disabled people. Based on underdetermined notions of “social construction”, this model presently threatens to unduly narrow reflections on the existential conditions of disabled agents, and to obscure crucial questions facing just social orders of the future. These notions imply an overemphasis on linguistic/mental and cultural acts in the (...) shaping of life courses, whereas physical, practical and existential pre-conditions of life come to be disregarded as purportedly freely available, (natural) features. Conversely, this argumentation sketch – a contribution to DisKo18 – works towards a reconceptualisation of disability rooted in external realism, assuming partially autonomous agents. The paper asks: What is the place of disabled people in the world, given that the elementary conditions and problems of life are not primarily of human origin, but arise out of a complex interaction with elements of external reality? What space remains to them in view of extant impairment-related restrictions? Based on a critique of constructionist tenets, possibilities for a just social order are discussed, considering (a) disabilities vs. (b) external, pre-social factors that limit the range of possible social solutions, with special regard to available resources. This approach is exemplified by placing disability in contexts of ecological sustainability. (Paper in German, short version). (shrink)

Recent philosophical work on sexuality has focused primarily on sexual orientation. Yet, there’s another normatively significant phenomenon in the neighborhood: sexual identity. Here, I develop a cultural theory of queer and straight sexual identity. In particular, I argue that sexual identity is a matter of inclusion/exclusion in relation to queer and straight cultures, which are differentiated in terms of characteristic practices involving kinship and political resistance.

The strong correlation between people’s socioeconomic position and health within high income countries is a well-documented fact. A person’s occupation, income and education level tell us a lot about that person’s prospects on a long and healthy life, such that we can speak of a ‘social gradient in health’, or a ‘socioeconomic health gap’. This association is often perceived to be unjust. Therefore, it is generally thought that governments should aim to reduce socioeconomic health inequalities. However, this idea needs ethical (...) justification, for it is not evident if and why exactly these inequalities are unjust. For instance, are inequalities in health unjust per se? Or because the underlying socioeconomic inequalities are unjust? And does justice require equal health levels, or a minimum level of health? What complicates the issue, is that the width of the health gap, or the steepness of the social gradient, depends on what health measures are used. Overall, the more subjective the measure, the greater the inequalities appear to be. But are all these measures equally morally relevant? This dissertation aims to give a better understanding of these philosophical questions. It does so by investigating the question of what we should understand by health in the first part, after which it addresses the question of how to evaluate socioeconomic health inequalities in the light of justice. The introduction begins with a description of the phenomenon of socioeconomic health inequalities, and how it has been addressed by politicians, epidemiologists and philosophers in the past and today. The chapter continues by formulating the central question of the dissertation – that of which health inequalities should be focused in the light of a concern with social justice. It explicates how this dissertation contributes to answering that question, by discussing the potential relation between the conceptualisation of health and justice evaluations, and by discussing which questions are addressed in each of the following chapters. The chapter 2 addresses the question of how health is conceptualised in the philosophical and public heath literature, and how theoretical concepts of health differ. It proposes to approach health concepts as a Wittgensteinian family of thick concepts and argues that while theories on health generally argue in favour of one specific concept, a comparison of concepts shows that we may need different concepts of health given the variety of health practices. By explicating the differences between five concepts of health, this chapter argues that each captures aspects of health that all seem relevant when we talk and think about health. Classifying these concepts based on their distinctions reveals them as members of a conceptual family: each of the discussed concepts differs from the others in at least one respect and resembles the others in several respects. Moreover, the discussion of the concepts shows that ‘health’ always both describes a condition and values that condition at the same time. Having both descriptive and evaluative dimensions, we can see health concepts as ‘thick concepts’. Given this evaluative dimension, it is important to reflect on the question of what understanding of health guides specific practices. Moreover, the distinctions revealed by the classification can serve as a conceptual toolbox for reflection on the assumptions and purposes of health practices. How such reflection could work is illustrated by a brief exploration of what health aspects are focused upon in three specific health practices. Chapter 3 presents a study into the question of how health is conceptualised by ordinary citizens and to what extent conceptualisations of health differ between socioeconomic groups. By making use of the method of concept mapping, this study analyses how different socioeconomic groups formulate their own answers regarding the question ‘what does health mean to you?’. It presents concept maps of health for three different socioeconomic groups living in the city of Utrecht that reveal that all groups have a multidimensional understanding of health. An interpretation of the concept maps reveals nuanced differences between groups. The multiple aspects of health were also ranked by importance. It appears that each group assigned most importance to mental health. All in all, the study shows that people in lower socioeconomic groups are more likely to show a conceptualisation of health that refers to 1) the absence of health threats, 2) a person within his/her circumstances, 3) the value of functional notions, and 4) an accepting attitude towards life. Chapter 4 addresses the question of what the theoretical and empirical study to concepts of health could imply for health equity practices. It does so by exploring further the suggestions made in chapters 2 and 3. Regarding the question of which health aspects should guide health equity policies, this chapter discusses the question of whether we should primarily look at subjective or objective health measures, and whether a universal or relative standard of health should be central. While justice-related concerns of impartiality and equal treatment may seem to favour an objective perspective and a universal health standard, it appears that we have good reason to account for the subjective perspective as well. It is also argued that a concern for recognition and participatory parity gives room for relative health standards. Th room for relative health standards confronts us with the question of how to deal with mechanisms like adaptive preferences that the concept maps reveal. It proposes a way out, by arguing for society-relative health standards. Chapter 5 examines the question of whether inequalities in health should be evaluated ‘directly’, thus independently of a distribution of their social determinants. It proposes a sufficientarian perspective, such that the central question of evaluation is that of whether everyone is – or can be – healthy enough. By discussing two sufficientarian approaches to health and social justice – by Powers & Faden and by Nussbaum – this chapter distinguishes two ways of setting a threshold level for health. Both approaches appear to provide an unsatisfactory basis for justice evaluations and lead us away from direct evaluation if we try to settle health minima that are less arbitrary. In anticipation to chapters 6 and 7, it is argued that the perspective of sufficient health for relational equality escapes this arbitrariness: compared to that of a decent human life, it better helps to answer both the question of what socioeconomic health inequalities a society is due to avoid, and the question of when socioeconomic health inequalities are unjust considering their consequences. Chapter 6 discusses to what extent Daniels’s theory of health justice provides a satisfactory answer to the question of what health inequalities a society is due to avoid. Daniels proposes an indirect evaluative approach by arguing that we should evaluate socioeconomic health inequalities in the light of Rawls’s principles of justice as fairness. That is, if socioeconomic inequalities are in accordance with fair equality of opportunity and with the difference principle, the corresponding health inequalities would be just. It is shown that the suggestion that Rawls’s principles regulate the social determinants of health neglects that not all social determinants of health belong to society’s basic structure as conceived of by Rawls and are thereby not subjected to the principles of justice. To acknowledge the social mechanisms leading to socioeconomic health inequalities in their full complexity, it is argued that we should broaden our understanding of society’s structure in accordance with Young’s notion of social structural processes. This renders the question of what health inequalities a society is due to avoid into a question of what we can expect from the side of the various actors that uphold the social structures that produce socioeconomic health inequalities. Lastly, it is discussed how a shift to Young’s theory completes the shift to non-ideal theorising that seem already initiated by Daniels, and that with this, the distinction between direct and indirect evaluation dissolves. Chapter 7 discusses to what extent equality in health is of instrumental value for a society of free and equals. It thus takes up the idea proposed in chapter 5, that an evaluation of the consequences of health inequalities is also due. Taking relational equality as an evaluative framework reveals three ways in which inequalities in life expectancy threaten this ideal. That is, via unequal risks to stigmatisation, unequal risks to unemployment and the risk of unequal pension enjoyments. It is thereby shown that these risks are especially great for those lower down the socioeconomic strata. It thus concludes that equality in health is of instrumental value to relational equality. The chapter continues to argue that our instrumental approach opens a new perspective: to mitigate the identified injustices by changing society, rather than by reducing inequalities in health. This is argued to be an advantage in the light of the realistic assumption that of the socioeconomic health inequalities will persist. The paper thus offers a complementary approach to both the evaluation and the mitigation of the injustice of socioeconomic inequalities in health. The discussion chapter summarises the central findings of the analyses of health concepts and discusses questions regarding the philosophical and practical merits of comparing theoretical health concepts, the need for developing new health measures or concepts and the importance or nonsense of studying citizen’s views on health. Repeating this for the dissertation’s second part, the central findings of the chapters on justice evaluation are summarised and followed by a discussion of questions and issues that have remained unaddressed so far. Here, central points of discussion are my take on rules of distribution, the distinction of direct and indirect evaluation, the role of ideal and non-ideal theory, the idea of relational equality, and personal responsibility for health. The chapter concludes by noting that also in the light of justice evaluations, all commonly used health measures are relevant for justice. Therefore, my recommendations for policy and further research entail that inequalities in each of these measures deserve attention by both policymakers and researchers. Specifically, policymakers and researchers should give attention to how exactly each of these health inequalities come about, in such a way that a discussion about the question of who can be assigned responsibility to alleviate them is well-informed; and both should give attention to the effects of health inequalities on the opportunities for people to live on equal standing, in such a way that when these opportunities are diminished, actions can be considered to aim to restore relational equality. (shrink)

Inclusive design prescribes addressing the needs of the widest possible audience in order to consider human differences. Taking differences seriously, however, may imply severely restricting “the widest possible audience”. In confronting this paradox, we investigate to what extent Rawls’ theory of justice as fairness applies to design. By converting the paradox into the question of how design can be fair, we show that the demand for equitability shifts from the design output to the design process. We conclude that the two (...) main questions about justice find application in design: the question about the standards of justice and the question about its metrics. We endorse a Rawlsian approach to the former, while some revision may be due regarding the latter. (shrink)

The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large. Those who wish to improve their clinical practice might struggle, however, to keep up with developments across numerous disability communities as well as the ever-growing body of disability studies scholarship. To assist with this goal, I offer (...) an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes. (shrink)

In this article, I argue that phenomenological psychopathologists, despite their critical attitude toward mainstream psychiatry, still hold problematic prejudices about the nature of psychiatric conditions as illness or disorder. I suggest that phenomenological psychopathologists turn to resources in the neurodiversity and mad pride movements to critically reflect upon these prejudices and appreciate the methodological problems that they pose.

Marilyn Adams rightly pointed out that there are many kinds of evil, some of which are horrendous. I claim that one species of horrendous evil is what I call horrendous-difference disabilities. I distinguish two subspecies of horrendous-difference disabilities based in part on the temporal relation between one’s rational moral wishing for a certain human function F and its being thwarted by intrinsic and extrinsic conditions. Next, I offer a theodicy for each subspecies of horrendous-difference disability. Although I appeal to some (...) claims made by Marilyn Adams for this theodicy, I reject one particular claim. I deny that one must be aware that one participates in a horrendous evil when the horrific event occurs. To develop this point and its relevance for a theodicy for horrendous-difference disabilities, I engage with Andrew Chignell’s work on infant suffering. In doing so, I show that what partly motivates the claim is a time-bias, i.e., near-bias. By rejecting this time-bias, I show how it is possible, given post-mortem life, for persons with profound cognitive disabilities to participate in horrendous evils and how these might be defeated by God. (shrink)