When disability-adjusted life years are used to measure the burden of disease on a population in a time interval, they can be calculated in several different ways: from an incidence, pure prevalence, or hybrid perspective. I show that these calculation methods are not equivalent and discuss some of the formal difficulties each method faces. I show that if we don’t discount the value of future health, there is a sense in which the choice of calculation method (...) is a mere question of accounting. Such questions can be important, but they don’t raise deep theoretical concerns. If we do discount, however, choice of calculation method can change the relative burden attributed to different conditions over time. I conclude by recommending that studies involving disability-adjusted life years be explicit in noting what calculation method is being employed and in explaining why that calculation method has been chosen. (shrink)

This article proposes a novel strategy, one that draws on insights from antidiscrimination law, for addressing a persistent challenge in medical ethics and the philosophy of disability: whether health systems can consider quality of life without unjustly discriminating against individuals with disabilities. It argues that rather than uniformly considering or ignoring quality of life, health systems should take a more nuanced approach. Under the article's proposal, health systems should treat cases where quality of life suffers because (...) of disability-focused exclusion or injustice differently from cases where lower quality of life results from laws of nature, resource scarcity, or appropriate tradeoffs. Decisionmakers should ignore quality-of-life losses that result from injustice or exclusion when ignoring them would improve the prospects of individuals with disabilities; in contrast, they should consider quality-of-life losses that are unavoidable or stem from resource scarcity or permissible tradeoffs. On this proposal, while health systems should not amplify existing injustice against individuals with disabilities, they are not required to altogether ignore the potential effects of disability on quality of life. (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)

Allocation of very scarce medical interventions such as organs and vaccines is a persistent ethical challenge. We evaluate eight simple allocation principles that can be classified into four categories: treating people equally, favouring the worst-off, maximising total benefits, and promoting and rewarding social usefulness. No single principle is sufficient to incorporate all morally relevant considerations and therefore individual principles must be combined into multiprinciple allocation systems. We evaluate three systems: the United Network for Organ Sharing points systems, quality-adjusted (...) class='Hi'>life-years, and disability-adjusted life-years. We recommend an alternative system—the complete lives system—which prioritises younger people who have not yet lived a complete life, and also incorporates prognosis, save the most lives, lottery, and instrumental value principles. (shrink)

In this article I seek to say what it is for something to count as a neglected disease. I argue that neglect should be defined in terms of efforts at prevention, mitigation and cure, and not solely in terms of research dollars per disability-adjusted life-year. I further argue that the trend towards multifactorialism and risk factor thinking in modern epidemiology has lent credibility to the erroneous view that the primary problem with neglected diseases is a lack of (...) research. A more restrictive contrastive model of disease is endorsed as better suited to the definition of neglected disease. (shrink)

Summary measures of health, such as the quality-adjusted life year and disability-adjusted life year, have long been known to incorporate a number of value choices. In this paper, though, I show that the value choices in the construction of such measures extend far beyond what is generally recognized. In showing this, I hope both to improve the understanding of those measures by epidemiologists, health economists and policy-makers, and also to contribute to the general debate about (...) the extent to which such measures should be adjusted to reflect ethical values. (shrink)

Estimates of the burden of disease assess the mortality and morbidity that affect a population by producing summary measures of health such as quality-adjusted life years and disability-adjusted life years. These measures typically do not include stillbirths among the negative health outcomes they count. Priority-setting decisions that rely on these measures are therefore likely to place little value on preventing the more than three million stillbirths that occur annually worldwide. In contrast, neonatal deaths, (...) which occur in comparable numbers, have a substantial impact on burden of disease estimates and are commonly seen as a pressing health concern. In this article we argue in favor of incorporating unintended fetal deaths that occur late in pregnancy into estimates of the burden of disease. Our argument is based on the similarity between late-term fetuses and newborn infants and the assumption that protecting newborns is important. We respond to four objections to counting stillbirths: that fetuses are not yet part of the population and so their deaths should not be included in measures of population health; that valuing the prevention of stillbirths will undermine women's reproductive rights; that including stillbirths implies that miscarriages should also be included; and that birth itself is in fact ethically significant. We conclude that our proposal is ethically preferable to current practice and, if adopted, is likely to lead to improved decisions about health spending. (shrink)

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/aids research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar as the scientific (...) opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting. (shrink)

The use of Quality-Adjusted Life Years (QALYs) in healthcare allocation has been criticized as discriminatory against people with disabilities. This article considers a response to this criticism from Nick Beckstead and Toby Ord. They say that even if QALYs are discriminatory, attempting to avoid discrimination – when coupled with other central principles that an allocation system should favour – sometimes leads to irrationality in the form of cyclic preferences. I suggest that while Beckstead and Ord have identified (...) a problem, it is a misdiagnosis to lay it at the feet of an anti-discrimination principle. The problem in fact comes from a basic tension between respecting reasonable patient preferences and other ways of ranking treatment options. As such, adopting a QALY system does not solve the problem they identify. (shrink)

Comparative valuation of different policy interventions often requires interpersonal comparability of benefit. In the field of health economics, the metric commonly used for such comparison, quality adjusted life years (QALYs) gained, has been criticized for failing to respect the equality of all persons’ intrinsic worth, including particularly those with disabilities. A methodology is proposed that interprets ‘full quality of life’ as the best health prospect that is achievable for the particular individual within the relevant budget constraint. (...) This calibration is challenging both conceptually and operationally as it shifts dramatically when technology or budget developments alter what can be achieved for incapacitated individuals. The proposal nevertheless ensures that the maximal achievable satisfaction of one person’s preferences can carry no more intrinsic value than that of another. This approach, which can be applied to other domains of social valuation, thus prevents implicit discrimination against the elderly and those with irremediable incapacities. (shrink)

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability (...) over the last fifty years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

In the context of a global pandemic, there is good health-based reason for governments to impose various social distancing measures. However, such measures also cause economic and other harms to people at low risk from the virus. In this paper, I examine how to make such trade-offs in a way that is respectfully justifiable to their losers. I argue that existing proposals like using standard QALY (quality-adjusted life-year) valuations or WELLBYs (wellbeing-adjusted life-years) as the currency (...) for trade-offs do not allow such justification, because they give weight to utilities that are irrelevant in a life-and-death context. Drawing on work on restricted aggregation in ethics, I articulate an alternative framework for balancing claims arising from prospects of different kinds of harm and benefit, and show how it can be applied to reasoning about trade-offs in a pandemic context. (shrink)

Even where willingness-to-pay as a measure of welfare impact is adjusted for diminishing marginal utility, welfare economics is shown to favour policies that add to the life expectancy or that enhance the quality of life of persons who are already better-off. I propose an alternative, Equal Respect methodology, under an axiomatic claim that at the point of decision the prospective life years of all individuals are of equal intrinsic social value. This justifies equal valuation of (...) risk mitigation across all persons; similarly, all appraised impacts should be scaled to accord equal respect to difficult but no-less-valuable lives. (shrink)

The COVID-19 crisis has forced a difficult trade-off between limiting the health impacts of the virus and maintaining economic activity. Welfare economics offers tools to conceptualize this trade-off so that policy-makers and the public can see clearly what is at stake. We review four such tools: the Value of Statistical Life (VSL); the Value of Statistical Life Years (VSLYs); Quality-Adjusted Life-Years (QALYs); and social welfare analysis, and argue that the latter are superior. We also (...) discuss how to choose policies that differentially affect people’s wellbeing. We argue in favor of evaluating policies using a Social Welfare Function (SWF), which evaluates the possible distributions of wellbeing across individuals that may result from a policy. Such a function, we argue, should regard increases in the wellbeing of the less well-off as especially valuable. We then use a model to illustrate how such a framework can help evaluate two broad policy types in response to the pandemic: eradication of the virus, and more lenient control of the spread. Our model reveals how such evaluations depend on many empirical facts but also on key value judgments about the relative importance of health and on the extent of special concern for the worse off. The purpose of this brief is not to make precise recommendations, as conditions vary widely across countries and over time, but to provide a methodology. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public (...) values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

When considering the social valuation of a life-year, there is a conflict between two basic intuitions: on the one hand, the intuition of universality, according to which the value of an additional life-year should be universal, and, as such, should be invariant to the context considered; on the other hand, the intuition of complementarity, according to which the value of a life-year should depend on what this extra-life-year allows for, and, hence, on the quality of that (...) life-year, because the quantity of life and the quality of life are complement to each other. This paper proposes three distinct accounts of the intuition of universality, and shows that those accounts either conflict with a basic monotonicity property, or lead to indifference with respect to how life-years are distributed within the population. Those results support the abandon of the intuition of universality. But abandoning the intuition of universality does not prevent a social evaluator from giving priority, when allocating life-years, to individuals with the lowest quality of life. (shrink)

The Life Worth Living investigates the exclusion of and discrimination against disabled people across the history of Western moral philosophy. Building on decades of activism and scholarship, Reynolds shows how longstanding views of disability are misguided and unjust, and he lays out a vision for an anti-ableist moral future. The introduction and first chapter are available to download here. -/- Table of Contents: Introduction: The Ableist Conflation. Part I: Pain. 1. Theories of Pain. 2. A Phenomenology of Chronic (...) Pain. Part II: Disability. 3. Theories of Disability. 4. A Phenomenology of Multiple Sclerosis. Part III: Ability. 5. Theories of Ability. 6. A Phenomenology of Ability. Conclusion: An Anti-Ableist Future. (shrink)

Background: Besides regulatory learning skills, learning also requires students to relate to their social context and negotiate it as they transition and adjust to medical training. As such, there is a need to consider and explore the role of social and cultural aspects in student learning, particularly in problem-based learning, where the learning paradigm differs from what most students have previously experienced. In this article, we report on the findings of a study exploring first-year medical students’ experiences during the first (...) semester of an undergraduate problem-based learning medical program at an African medical school. Method: We employed a qualitative case study approach using in-depth interviews with 23 first-year medical students. Participants ranged in age from 18 to 25 years. All students were bi/multilingual (some spoke three to five languages), with English as the learning language. We conducted an inductive thematic analysis to systematically identify and analyze patterns in the data using the Braun and Clarke framework. Results: Before medical school, students worked hard to compete for admission to medical school, were primarily taught using a teacher-centered approach, and preferred working alone. At the beginning of medical school, students found it challenging to understand the problem-based learning process, the role of the case, speaking and working effectively in a group, managing a heavy workload, and taking increased responsibility for their learning. By the end of the first semester, most students were handling the workload better, were more comfortable with their peers and facilitators, and appreciated the value of the problem-based learning approach. Conclusions: Our study highlights the importance of interrogating contextual sociocultural factors that could cause tension when implementing problem-based learning in non-western medical schools. Adjustment to problem-based learning requires a conceptual and pedagogic shift towards learner-centered practice, particularly concerning self direction, the role of the case, and collaborative learning. As such, there is a need to develop and implement research informed learning development programs that enable students to reflect on their sociocultural beliefs and practices, and enhance their regulatory learning competence to optimize meaningful and early engagement with the problem based learning process. (shrink)

Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not and that such judgments by medical practitioners in particular can be biased. Guided by their desire to do good and avoid harm, surgeons often rely on "the eyeball test" to decide whether a patient will or will not benefit from surgery. But the eyeball test can easily harbor a range of implicit judgments and (...) biases against patients with disabilities, including erroneous assumptions about QoL. We critique the use of the "eyeball" test and offer suggestions to reduce bias and ensure that patients’ values are more consistently prioritized in surgical decision-making. (shrink)

There is an ongoing and robust tradition of science and technology studies scholars conducting ethnographic laboratory studies. These laboratory studies—like all ethnographies—are each conducted at a particular time, are situated in a particular place, and are about a particular culture. Presumably, this contextual specificity means that such ethnographies have limited applicability beyond the narrow slice of time, place, and culture that they each subject to examination. But we do not always or even often treat them that way. It is beyond (...) common for us to speak about what one or another laboratory study reveals about the laboratory, or “science” much more broadly. Given the contextual specificity of our ethnographic laboratory studies, what justifies this presumed generalizability? Initially, this manuscript surveys typical responses to this question, but then it pursues an unusual one: the potential replicability of ethnographic results. This potential is hereby explored, via an ethnographic replication attempt—one designed and conducted in order to test the generalizability of a particular laboratory study, that of Latour and Woolgar’s classic Laboratory Life. The results of the ethnographic replication attempt are reported, and a remarkable degree of replicability is established. (shrink)

Research and practice about self-determination in the context of disability has centred on teaching skills and providing support to help people with impairments to be independent. However, limited research exists about the impact of Information and Communication Technologies, in particular social media and mobile devices, on the development of self-determination skills among people with disabilities. This paper presents the findings of a qualitative study which collected data from observations, a researcher diary, focus groups, individual interviews and data from social (...) media. The focus of the study was on young people with vision impairments who were transitioning to university life. The study found that the participants developed self-determination skills by using and adapting collaborative and interactive online tools and mobile devices according to their transition needs. This finding expands the understanding of the implications of new technologies for young people with disabilities’ personal development and the enhancement of self-determination. (shrink)

In recent years, an array of critical emotion theorists have emerged who call for change with respect to how emotion theory is done, how emotions are understood, and how we do emotion. In this chapter, I draw on the work that some of these authors have produced to analyze how emotional marginalization of trans and disabled identities is experienced, considering in particular how this emotional marginalization results from the long history of pathologization of trans and disabled people. The past (...) and current pathologization of trans and disabled people is produced through normative assumptions, values, and beliefs that uphold systems of normalcy, including assumptions, values, and beliefs about how we feel and express emotions. In order to examine these issues, I identify three different stages at which emotional marginalization may take place: emotion experience, emotional display, and emotion recognition. In other words, emotional marginalization of trans and disabled people can occur at any of these stages. The central concern of my chapter is thus to show how emotional marginalization, at each of these stages, affects trans and disabled people. (shrink)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more (...) specific clusters of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

One of the key challenges of social policy in Poland in the early 21st century is to adapt its management to the requirements of a service economy. Essential conditions for the mixed economy of welfare have been already created after adjustments of the subsystems of national social policy during the first years of membership in the European Union since 2004. Labour market policies already include the relationships between providers from the public sector, the commercial sector, and the non-governmental sector. (...) However, the tasks and services of individual entities and institutions still lack coordination and integration. This paper focus on the examples of possibilities for their development by combining the activation policy with concepts of the governance and welfare mix. The paper presents the results of the author’s research on the implementation of welfare mix solutions in the field of professional activation of the unemployed people in Poland. Two case studies are included the implementation of outplacement programs that are based on the cooperation between different entities; and the cooperation between the public employment services and non-governmental employment agencies in the activation of people with disabilities in the labour market. Moreover, basic concepts of ongoing reforms of active labour market policies in Poland were discussed. The summary contains the practical recommendations and possible directions for further research in the field of integration of employment services. (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 (...) class='Hi'>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)

Some parents have taken steps to ensure that they have deaf children, a choice that contrasts with the interest that other parents have in enhancing the traits of their children. Julian Savulescu has argued that, morally speaking, parents have a duty to use assisted reproductive technologies to give their children the best opportunity of the best life. This view extends beyond that which is actually required of parents, which is only that they give children reasonable opportunities to form and (...) act on a conception of a life that is good for them. Does the selection of deaf children violate that responsibility? Morally speaking, parents should refrain from using assisted reproductive treatments or prenatal interventions in order to have a child with a disability. Deafness and other disabilities represent intrinsic disadvantages that cannot be offset by other advantages that families and society can offer to people. By the same token, neither should parents seek enhancements of intelligence or physical traits that would undercut intrinsic goods of human life in similar ways. These moral arguments do not, however, sustain the judgment that the law should necessarily interfere with parents' decisions in these matters, even if those choices are morally unwise. (shrink)

I am grateful to Philip Reed for his article ‘Expressivism at the Beginning and End of Life’. His piece compellingly demonstrates the import of expanding analyses concerning the expressivist thesis beyond the reproductive sphere to the end-of-life sphere. I hope that his intervention spurns further work on this connection. In what follows, I want to focus on what I take to be moments of slippage in his use of the concept of disability, a slippage to which many (...) disability theorists succumb. In short, I argue that there are crucial moments in his argument where Reed runs together cases of disability that should be kept distinct—at minimum for the context in which he discusses them. Namely, forms of disability the suffering of which justice can eliminate versus those that ‘no amount of accessibility and social justice could eliminate’.1 Disability studies scholars and philosophers of disability have long noted that certain types of disability are often ‘left …. (shrink)

Research on transition to higher education and young people with disabilities has increased in recent years. However, there is still limited understanding of transition issues and how digital technologies, such as social media and mobile devices, are used by this group of students to manage these issues. This article presents the findings of an empirical study that addressed this matter based on young people’s views and experiences. The qualitative study was conducted in the context of a group of students (...) with vision impairments transitioning to a New Zealand university. The findings draw from observations, a researcher diary, focus groups, individual interviews, and data from social media. The study shows that, like their non-disabled peers, the students actively engaged with interactive and collaborative digital technologies to make sense, individually and collectively, of different transition issues before, during and after the first academic trimester of their university journey. (shrink)

The question of how disability affects wellbeing has occupied a number of philosophers in recent years. However, this literature has proceeded without a careful examination of the fairly vast empirical research on the topic. In this paper, I review the scholarly literature and discuss some philosophically-relevant aspects of it. On average, those with disabilities have a significantly lower level of wellbeing than those without disabilities. Furthermore, there is strong evidence that this reduction in wellbeing is not due entirely (...) to ableist factors. Hence, I argue that it shows that the Mere Difference View of disability is most likely false. However, the literature indeed shows that disabled people typically live good lives. Thus, despite its rejection of the Mere Difference View, it still upholds a disability-affirmative view. These findings allow for a measured critique of some of Peter Singer’s writings on disability. (shrink)

This essay seeks to acknowledge the unsettling reality of children being intentionally maimed towards disability and disfigurement as economic commodity. The issue is easily invisibilized in modern education, and understandably so: the trauma triggered by these bloody realities can automatically disqualify the content for formal in school education as a form of “unwelcome truth”. Freire and Fanon, however, did not shy away from the horrific state of life for the oppressed and the wretched in their consideration of pedagogy. (...) The lived experience of maimed children is tragic, but it is lived experience nonetheless – acknowledged by hooks as “a way of knowing that coexists in a non-hierarchical way with other ways of knowing” (2014). In other words, this knowledge exists but is arguably not mobilized by society towards action. Critical consciousness, upheld by Freire as the key to seeing inequality to act upon it, is a goal beyond reach for the maimed children themselves. Here, we consider the extension proposed by Nicholls (2011), who discusses pedagogy of the privileged as an equally important parallel towards collaborative action against long-standing inequalities. In the context of these children having minimal access to education, we contend that privileged students must be the ones to carry forth the knowledge towards their own critical consciousness. Specifically, we explore what acknowledging children who are maimed could offer towards pedagogy, in relation to helping students to 1) minimize the act of “othering” in a global community; 2) reconsider the role of mass-media and media literacy in their critical consciousness; and 3) move away from surface-level, performative charity against societal inequalities. (shrink)

As parents of a young woman who very much resembles Ashley, we recognize the way her parents speak of their daughter’s preciousness, and of the love and joy she brings into their life. We know too well the hardships associated with rearing a child with severe physical and intellectual disabilities, especially in our own society, unyielding as it is to the medical needs even “normals” have. We would not have our daughter Sesha undergo similar interventions. We do not believe (...) she is a perpetual child, even if her intellectual capacities do not exceed those of a child, for she has lived for thirty-seven years in this world and with that has acquired knowledge, sensitivities, and sensibilities that no child of “comparable” capacities could have. (shrink)

Japanese bioethics has created a variety of important ideas that have not yet been reflected on mainstream bioethics discourses in the English-speaking world, which include “the swaying of the confused self” in the field of feminism, “inner eugenic thought” concerning disability, and “human relationship-oriented approaches to brain death.” In this paper, I will examine them more closely, and consider what bioethics in Japan can contribute to the development of an international discussion on philosophy of life.

Disability has been a topic of heightened philosophical interest in the last 30 years. Disability theory has enriched a broad range of sub-specializations in philosophy. The call for papers for this issue welcomed papers addressing questions on normalcy, medical ethics, public health, philosophy of education, aesthetics, philosophy of sport, philosophy of religion, and theories of knowledge. This issue of Essays in Philosophy includes nine essays that approach the philosophy of disability in three distinct ways: The first (...) set of three essays provide a careful analysis of John Rawls, and the application of his work in ethics and justice to societies in which persons with disabilities, especially cognitive disabilities, can take active part in the processes of civil society. The second set of three essays branch out into continental philosophy, and are especially engaged with issues of community membership, communication, translation, and hermeneutics. The third set of three essays address disability specifically through the arts and aesthetics; asking questions on the portrayal of disabled persons in the arts and its implications for normalcy, sexuality, beauty, and the sublime. (shrink)

In the intersection between eugenics past and present, disability has never been far beneath the surface. Perceived and ascribed disabilities of body and mind were one of the core sets of eugenics traits that provided the basis for institutionalized and sterilization on eugenic grounds for the first 75 years of the 20th-century. Since that time, the eugenic preoccupation with the character of future generations has seeped into what have become everyday practices in the realm of reproductive choice. As (...) Marsha Saxton (2000) and Adrienne Asch (2000, 2003) have forcefully argued, the use of prenatal screening technologies to facilitate the selective abortion of fetuses with features that signify disabling traits—the paradigm here being trisomy 21 in a fetus indicating Down Syndrome in the child—express a negative view of such disabilities sufficient to warrant terminating an otherwise wanted pregnancy. The eliminative structure of what Rosemary Garland Thompson (2012) has called eugenic logic persists in contemporary practices governing reproductive choice, social inclusion, and democratic participation and their relationship to disability. The tie between eugenics and contemporary disability studies suggests that eugenics and reflection on its history can also play a more positive role in disability politics. After focusing on eugenics in the first half of the paper, we will shift in the second half of the paper to eugenic resonances in contemporary thought and practice, concluding with some thoughts about ongoing practices of silencing and the very idea of eradicating disability. (shrink)

Since transition to higher education emerged as a research topic in the early 1970s, scholarly inquiry has focused on students without impairments and, what is more, little attention has been paid to the role of digital technologies. This article seeks to address this knowledge gap by looking at the university experiences of a group of first-year students with vision impairments from New Zealand, and the way they use digital tools, such as social media and mobile devices, to manage their transition-related (...) challenges. The article summarises the findings from a longitudinal qualitative project which was methodologically informed by action research (AR). The article explores and discusses scholarly inquiry of transition to university and introduces a conceptual framework which includes five overlapping stages, the transition issues faced by the students and the roles played by digital technologies. The article updates and expands the theoretical understanding of transition to higher education and provides empirical evidence for practitioners to support the needs, inclusion, and participation of young people with disabilities in the tertiary setting. (shrink)

Background We investigated the personal philosophies of eight persons with a tetraplegic condition (four male, four female), all living in Sweden with a chronic spinal cord injury (SCI) and all reporting a good life. Our purpose was to discover if there is a philosophical mindset that may play a role in living a good life with a traumatic SCI. Methods Two rounds of in-depth qualitative interviews were performed by the same interviewer, a philosophical practitioner by training (de Miranda). (...) The second round systematically covered the following elements: bodily sense, sense of self, sense of belonging, sense of the possible, sense of purpose and philosophical sense. This six-step method developed by de Miranda is called SMILE_PH, an acronym for Sense-Making Interviews Looking at Elements of Philosophical Health. Results All the interviewees, as a consequence of their trauma, reported having gone through a reinvention of themselves which implied questioning the meaning and purpose of their life in particular and life in general. A philosophical rather than realistic sense of the possible was abstracted toward teleological growth. All interviewees developed a sense of purpose based on self-interested altruism and solidarity with disabled peers. Conclusions To reinvent a good life with SCI, in addition to physical training and willpower, one needs to consider philosophical questions about the self and life, what Kant called the cosmic interests of reason: What may I hope? What must I do? What can I know? Our results indicate that we should, in the future, explore what the philosophical health approach may bring to rehabilitation processes in the months or years that follow the trauma. (shrink)

Disability laws are crucial in ensuring a life of dignity for persons with disabilities. However, they remain limited and ineffective in the absence of adequate knowledge and awareness of the experiences with disability. The limitedness of disability laws has been spoken of in cases where the full realization of rights is subject to technological, philosophical, and market dynamics. In many cases, the law is also weakened by negative cultural beliefs and social perceptions of disability. And (...) then there are cases where disability laws perpetuate or tolerate oppression and violence. Despite their limitedness, disability laws offer normative content to facilitate engagement and critique for reform. In terms of what disability laws ‘ought’ to be, scholars write, that they should be about disabled people and the meanings provided by them. This objective has and can be fulfilled with the aid of disability studies that go beyond the inquiries of law with the right kind of research tools to theorize and re-theorize concepts and meanings about disability. Disability studies, in other words, represent the living conditions of disabled persons and the questions of how disability and/or impairment should be defined. This chapter examines the interaction between disability law and disability studies through the prism of the Convention on the Rights of Persons with Disabilities (CRPD). While discussing the models of disability (medical, social, human rights, and relational-community models) and agendas for reforming the CRPD, the chapter highlights the importance of new concepts and approaches. Further, the potential of disability laws, CRPD in particular, has been discussed keeping in mind the application of its core principles across different sectors (with a special focus on the Marrakesh treaty and copyright laws). (shrink)

Since the completion of the human genome project in 2003, genomic sequencing, analysis, and interpretation have become staples of research in medicine and the life sciences more generally. While much ink has been spilled concerning genomics’ precipitous rise, there is little agreement among scholars concerning its meaning, both in general and with respect to our current moment. Some claim genomics is neither new, nor noteworthy; others claim it is a novel and worrisome instrument of newgenics. Contrary to the approaches (...) of Foucault scholars in both camps, in this paper I utilize research in philosophy of disability to argue that genomics is indeed noteworthy as a unique form of biopower and that its primary function is to precisify impairments in contradistinction to disability. I call the force at play in this process genopower. (shrink)

What is so striking about Breaking Bad is how centrally impairment and disability feature in the lives of the characters of this series. It is unusual for a television series to cast characters with visible or invisible impairments. On the rare occasions that television shows do have characters with impairments, these characters serve no purpose other than to contribute to their ‘Otherness.’ Breaking Bad not only centralizes impairment, but impairment drives and sustains the story lines. I use three interrelated (...) themes from Disability Scholarship to analyze Breaking Bad. The first theme, Bodily Control, is that good bodies are controlled bodies and that uncontrolled, messy bodies are frightening, bad bodies. Indeed, the messiness of impairment and disability is so bad, that impaired and disabled individuals are excluded or shut out or excluded from many areas of public life. The second theme, Normalcy, is that the effect of hiding away impairment, of attempting to conceal disability, is that society becomes defined by, and structured around, the concept of normalcy. Normalcy, being normal, attaining and maintaining normalcy, is the preoccupation of most in society. To fail to be normal, or to fall from what is considered to be normal, is a source of tremendous anxiety for most people. These two themes, Bodily Control and Normalcy are conceptually connected: impairment, disease and dying are so feared because they are socially invisible and, therefore unknown and unknowable. They are the undiscussable taboos. The third theme, Bodily Realism, is that having a realistic view of the body, which would at minimum require accepting the fact that human bodies are fragile things, prone to disease and accident and are ultimately destined to die, makes one more at ease in the world, and able to live better lives and live as a better person. Indeed, so the argument goes, our lives would be richer, more rewarding—emotionally and morally—if we cared less about normalcy because of a dread of abnormalcy, but instead learned to accept if not positively value the physical variability of human existence. (shrink)

Insofar as many older adults fit some definition of disability, disability studies and gerontology would seem to have common interests and goals. However, there has been little discussion between these fields. The aim of this paper is to open up the insights of disability studies as well as philosophy of disability to discussions in gerontology. In doing so, I hope to contribute to thinking about the good life in late life by more critically reflecting (...) upon the meaning of the body, ability, and the variability of each. My central argument is that we should conceptualize age‐associated bodily variations and abilities not in terms of individual capacity, but in terms of what I call “the extended body.” It is in light of the meaning of embodiment and ability in general that we must think differently and more capaciously about the meaning of late life in particular. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

In this chapter, I describe my “post-diagnosis” experiences as the parent of an autistic child, those years in which I tried, but failed, to make sense of the overwhelming and often nonsensical information I received about autism. I argue that immediately after being given an autism diagnosis, parents are pressured into making what amounts to a life-long commitment to a therapy program that (they are told) will not only dramatically change their child, but their family’s financial situation and (...) even their entire mode of existence. Moreover, despite information overload, many treatment programs for autism rely on empty jargon and make completely unrealistic promises, so parents are left feeling overwhelmed and panicked. Even well respected therapy programs encourage parents to spend liberally. Indeed, autistic therapists, who help construct what I refer to as the Culture of Autism, advise parents to commit to a minimum of 35 to 45 hours of intensive therapy every week. The implications are clear: for a parent who works full-time, their autistic child becomes a second full-time job. Autism is big business right now, and therapists are pushing parents to the brink of desperation. So it is not too surprising that there is a desperate cry for a more permanent solution—which is why researchers seek to cure autism. But there are two ways to conceptualize cure. A Therapeutic Cure model (TC) conceives of a cure as a beneficial treatment for the patient that eliminates or ameliorates the harms of the disease or condition. But the notion of a therapeutic cure for autism is highly implausible, given the complexities of autism. Indeed, at this point, the vast majority of researchers have come to the conclusion that the idea of a therapeutic cure for autism is simply a non-starter. Therefore the bulk of research seeking a cure for autism focuses instead on a second approach, which I refer to as the Negative Eugenics Cure model (NEC). With this model, the intention is to eliminate the disease or condition without regard for the health or well-being of the organism carrying the disease or condition. So, with regard to autism, researchers are focusing on identifying genetic markers for autism that can be detected in utero, or in embryos, so that autistic fetuses can be eliminated and autism eradicated by preventing the existence of autistic individuals. I review both models and argue that both fail to provide convincing arguments that the “solution” either offers is desirable. Both rest on the assumption that autism renders a life not worth living which, all things considered, is false. Instead of pushing to cure autism, an idea pervasive in this Culture of Autism, I contend that autistics are individuals with lives worth living. Moreover, rather than expend millions on research to search for the means to eliminate autism, we should instead expend our resources to ensure autistic individuals have access to support they may need. If the phenomenology of autism were better understood and appreciated, the panicked demand for a cure for autism might abate and perhaps autism could be seen as having value in and of its own right. (shrink)

Drawing upon the life and work of S. Kay Toombs, I explore the impact and import of phenomenological accounts of disability for the existentialist tradition. Through the case of multiple sclerosis, a noncongenital, late-onset, and degenerative disability, I show how the general structures that emerge from its lived experience largely support a mere-difference view of disability and highlight the need for an equitably habitable world. I further argue that phenomenological accounts of disability demonstrate accessibility to (...) be the defining feature of what it means to be embodied as we are. I conclude with a discussion of the more general philosophical relationship between disability, embodiment, and existentialism. (shrink)

Background -/- Previous literature suggests that those with reading disability (RD) have more pronounced deficits during semantic processing in reading as compared to listening comprehension. This discrepancy has been supported by recent neuroimaging studies showing abnormal activity in RD during semantic processing in the visual but not in the auditory modality. Whether effective connectivity between brain regions in RD could also show this pattern of discrepancy has not been investigated. Methodology/Principal Findings -/- Children (8- to 14-year-olds) were given a (...) semantic task in the visual and auditory modality that required an association judgment as to whether two sequentially presented words were associated. Effective connectivity was investigated using Dynamic Causal Modeling (DCM) on functional magnetic resonance imaging (fMRI) data. Bayesian Model Selection (BMS) was used separately for each modality to find a winning family of DCM models separately for typically developing (TD) and RD children. BMS yielded the same winning family with modulatory effects on bottom-up connections from the input regions to middle temporal gyrus (MTG) and inferior frontal gyrus(IFG) with inconclusive evidence regarding top-down modulations. Bayesian Model Averaging (BMA) was thus conducted across models in this winning family and compared across groups. The bottom-up effect from the fusiform gyrus (FG) to MTG rather than the top-down effect from IFG to MTG was stronger in TD compared to RD for the visual modality. The stronger bottom-up influence in TD was only evident for related word pairs but not for unrelated pairs. No group differences were noted in the auditory modality. Conclusions/Significance -/- This study revealed a modality-specific deficit for children with RD in bottom-up effective connectivity from orthographic to semantic processing regions. There were no group differences in connectivity from frontal regions, suggesting that the core deficit in RD is not in top-down modulation. (shrink)

Disability has been a topic in multiple areas of philosophical scholarship for decades. However, it is only in the last ten to fifteen years that philosophy of disability has increasingly become recognized as a distinct field. In this paper, I argue that the foundational question of continental philosophy of disability is the question of the meaning of ability. Engaging a range of canonical texts across the Western intellectual tradition, I argue that the foundational question of continental (...) philosophy of disability is the question of the meaning of ability. I then explore three pathways toward this question: the verdict of bodies, the bind of bodies and worth, and the dogma of individual ability. I contend that unlike the question of the meaning of being, the question of the meaning of ability is not simply a problem of forgetting but instead a problem of cruelty and dehumanization. (shrink)

Cecilea discusses with Shelley Tremain her experience as a first-generation U.S. citizen and first-generation university graduate; why she was motivated to study philosophy and become a professional philosopher; the launching of the new, open access, online journal, the Journal of Philosophy of Emotions (JPE); the “mismatch” between what she seemed like “on paper” and what she is is capable of; how societal, institutional, professional, and philosophical practices and policies must be adjusted to enable others like her to flourish as (...) professional philosophers; and any resources—such as articles, books, and videos—that she would like to recommend on the topics and issues that she has addressed in this interview. (shrink)

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)

In the present study an attempt is made to assess the comparison of adjustment and academic achievement among students in Dire Dawa university, Ethiopia. A total of 100 students studying in Dire Dawa university were randomly selected. They were administered in Students Adjustment Inventory (SAI) which measured adjustment of an individual in 4 areas (Campus Life, health, time management and social life). Academic achievement scores were collected from the respective university. One-way ANOVA was employed to find out the (...) significance of difference between students with different levels of adjustment in various areas and their academic achievement scores. Results revealed that only campus life adjustment had significant influence over academic achievement. Social life, time management and health adjustments did not have significant influence over academic achievement of the sample studied. (shrink)

Frontiers of Justice: Disability, Nationality, Species Membership, by Martha Nussbaum, Harvard University Press, 2006. How should we measure human development? The most popular method used to be to focus on wealth and income, as when international development agencies rank countries according to their per capita gross domestic product. Critics, however, have long noted shortcomings with this approach. Consider for example a wealthy person in a wheelchair: her problem is not a financial one, but a lack of access to public (...) spaces. Even if she were to hire porters to carry her in and out of stores and libraries, that would not really address her situation. There is a basic sense of dignity and self-respect that comes with being able to move around on one’s own. Even for a disabled millionaire, that will only be possible when public buildings are wheelchair accessible. To fully grasp what the handicapped need, we have to look beyond purely economic measures of well-being, and take into account the actual capabilities people can exercise in their daily lives. The example of the well-off person in a wheelchair illustrates what Martha Nussbaum calls the capabilities approach to human development. It was first pioneered in economics by Amartya Sen (who came up with the wheelchair example), and Nussbaum has for years been associated with a more philosophical variation, which uses the idea of capabilities to outline basic political principles. In Frontiers of Justice: Disability, Nationality, Species Membership Nussbaum takes this project even further, and applies the capabilities approach to issues of justice involving not only the disabled and the global poor, but animals as well.Yet for a philosophy called the capabilities approach, it is surprising how little theoretical work capabilities do in Nussbaum’s overall account. (shrink)