It may seem obvious that causing disability in another person is morally problematic in a way that removing or preventing a disability is not. This suggests that there is a moral asymmetry between causing disability and causing non-disability. This chapter investigates whether there are any differences between these two types of actions that might explain the existence of a general moral asymmetry. After setting aside the possibility that having a disability is almost always bad or (...) harmful for a person (a view that we have critiqued at length elsewhere), seven putative differences are considered. Ultimately, it is concluded that none of these seven factors can ground a general moral asymmetry between causing disability and causing non-disability, though each factor can provide some moral reason to avoid causing disability in certain particular cases. (shrink)

I draw on my experiences of passing as non-disabled to explain how a disabled person can hide his disability, why he might do so, and what costs and risks he and others might face along the way. Passing as non-disabled can bring greater social acceptance and inclusion in joint-projects, an enhanced sense of belonging, pride and of self-worth, and an easier time forming and maintaining personal relationships. Yet hiding one’s disability can also undermine some of these same values (...) when doing so, for example, prevents someone from living up to normal social expectations or from sharing important aspects of himself with others. Hiding a disability can also interfere with a person’s self-respect, self-acceptance, integrity, and self-development. Although the chapter does not take a stand on whether hiding a disability is, overall, prudent, wise or morally justified, it draws out some lessons about disability from why someone might want to hide it. (shrink)

A persistent paradox apparently infects disability civil rights claims. On the one hand, these rights claims are often understood to apply only to those who are sufficiently impaired in body or in mind to qualify for them because of the disadvantage they endure. On the other hand, asserting significant impairments threatens to undermine the plausibility of these claims as civil rights rather than as welfare for those who are dependent and in need of extra help. Behind this paradox lies (...) a type of categorical understanding of disability civil rights: that disability civil rights are only for those who fall into a category of disability and that this category should be defined in a particular way, in terms of disadvantaging disablement. In this article, I dispel this paradox by deploying a critical analysis of Elizabeth Barnes’s account of physical disability in her recent book, The Minority Body. In her book, Barnes makes the important critical point that disability is not “bad” difference. Instead, she argues that physical disability is a physical condition that the disability rights community is working to promote justice for. I argue that this account fails as a project of ameliorative social metaphysics because it fails to understand the role of impairment in the construction of disability antidiscrimination law. I also argue that her account risks privileging physical disability and is thus problematic as a starting place for examining disability justice. (shrink)

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim (...) that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

A complete theory of the permissibility of sex must not only determine the permissibility of sex between typical adult humans. In addition, it must also adequately take into consideration sex acts involving non-human animals, children, and humans with intellectual disabilities. However, when trying to develop a non-discriminatory account that includes these beings, two worrying problems of animal sex arise. To surpass them, I argue for a reformulation of the standard theory. To produce a truly inclusive account our theory should be (...) focused on assent, dissent, the significance of sex, and the similarity of the beings engaging in the sex act. (shrink)

The republican ideal of non-domination identifies the capacity for arbitrary interference as a fundamental threat to liberty that can generate fearful uncertainty and servility in those dominated. I argue that republican accounts of domination can provide a powerful analysis of the nature of legal and institutional power that is encountered by people with mental disorders or cognitive disabilities. In doing so, I demonstrate that non-domination is an ideal which is pertinent, distinctive, and desirable in thinking through psychological disability. Finally, (...) I evaluate republican strategies for contesting domination, focusing on the limits of contestatory democracy, and proposing a participatory alternative which better addresses problems of political agency in the mentally disordered and cognitively disabled. (shrink)

Even though the digital church has been in existence for some time, it was mainly a transmission of onsite church services and programmes in the online space. The coronavirus disease 2019 (COVID-19) pandemic and its demands for a global shutdown to mitigate and contain the disease moved almost all social activities including church services to the online space. It is evident that persons with disability experience extreme exclusion from the church’s theology, praxes, and ethos. Unfortunately, this phenomenon is replicated (...) in the virtual space. Research proves that persons with disability were not considered in the migration of churches to the virtual space; hence, digital accessibility is minimal or non-existent during and after the COVID-19 era.Contribution: This article explores the various transformational stages of both the church and media while further exploring possible ways by which the virtual church may grant accessibility to persons with disability. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers (...) and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

This article develops a detailed, empirically driven analysis of the nature of the transition costs incurred in becoming disabled. Our analysis of the complex nature of these costs supports the claim that it can be wrong to cause disability, even if disability is just one way of being different. We also argue that close attention to the nature of transition costs gives us reason to doubt that well-being, including transitory impacts on well-being, is the only thing that should (...) determine the wrongness of causing or removing disability. Non-welfare considerations also defeat the claim that it is always wrong to cause disability. The upshot of these conclusions is that closer attention to the nature of transition costs supports disabled people who strenuously contest the assumption that their well-being is lower than nondisabled people. It also suggests that, in addition, disabled people should contest their opponents’ narrow account of how we should make ethical decisions regarding causing or failing to prevent disability. (shrink)

We współczesnej polityce rynku pracy udział biorą nie tylko takie podmioty publiczne, jak urzędy pracy, lecz także niepubliczne agencje zatrudnienia prowadzone przez podmioty komercyjne i organizacje pozarządowe. Agencje zatrudnienia, mając zróżnicowane cele, struktury i formy zarządzania, podejmują w znacznej mierze działalność aktywizacyjną, zaadresowaną do grup znajdujących się w szczególnej sytuacji na rynku pracy, w tym do osób niepełnosprawnych. Opracowanie ma na celu przybliżenie potencjału krajowych agencji zatrudnienia osób niepełnosprawnych, które są prowadzone przez organizacje pozarządowe. Artykuł zwraca uwagę na teoretyczne koncepcje (...) współpracy publicznych i niepublicznych służb zatrudnienia na poziomie lokalnym i regionalnym. Przybliżono także wybrane wyniki badania własnego, w którym przeprowadzono analizę źródeł wtórnych i indywidualne telefoniczne wywiady kwestionariuszowe. W podsumowaniu przedstawiono rekomendacje praktyczne i potencjalne kierunki dalszych badań. ** Contemporary labor market policy involves not only the public sector as labour offices, but also private employment agencies run by commercial entities and non-governmental organizations. Employment agencies have different objectives, structures and forms of management. They take a large extent of activation services addressed to people in a specific situation on the labor market, including disabled persons. Article aims to introduce the capacity of national employment agencies for disabled people, which are run by non-governmental organizations. Article draws attention to theoretical concepts of cooperation between public and private employment services at local and regional. The chapter also shows selected results of research conducted on the basis of an analysis of secondary sources and individual questionnaire telephone interviews. Summary contains practical recommendations and possible directions for further research. (shrink)

The present study was designed to investigate visually handicapped students' explanations for failure when the motive to maintain or enhance self-esteem was in conflict with the motive to present a favorable social image. Subjects experienced manipulated failure in a text comprehension task and were subsequently asked to give causal and responsibility attributions in the presence of either a visually handicapped or a non-handicapped experimenter. It was expected that visually disabled participants would claim a “handicap-bonus” from the non-handicapped experimenter by explicitly (...) presenting non-defensive attributions and accounts as well as handicap-related responses, while defensive explanations should be more pronounced when faced with a blind experimenter. The data provide support for the existence of presumed social expectations as determinants of individuals' verbal self-presentations. (shrink)

Discrimination between disabled and non-disabled people is still an issue of fairness and justice. In this COVID-19 pandemic time, this issue highlighted in a significant way. In hospital, the disabled persons to face today issues while triage like whether they have the right to get the ventilator first when there is limited ventilation support or their vulnerability could be the cause for being neglect or they do not have to have a quality of life. There are lots of ethical dilemmas (...) that we face today and these are not solvable overnight by the existing framework or policies. The existing paternalism, utilitarianism, or even ableism can not ensure making people living with disabilities (PLWD) rights equal. It is very clear that the professional expertise, policy or framework have so many loop holes that we are still struggling to take steps to effective and ethical decision making. This paper focuses the emergency of ethics based research, policy directions, and frameworks to eliminate those discriminations. (shrink)

This note examines two recent judgements of theEnglish Court of Appeal, Re S.L. and ReA., concerning the sterilisation of a womanand a man with learning disabilities. The casesare significant for health care lawyers in thatthey effect a reworking of the common lawdoctrine of necessity, which serves as thelegal justification for providing medicaltreatment to adults lacking capacity to giveconsent. The cases are also significant forfeminist scholars engaged in the project of`sexing' the subjects of legal discourse (forexample, Naffine and Owens, 1997). Thejudgments (...) of Re S.L. and Re A.,consistent with earlier sterilisation cases,fail to offer a conception of learning disabledsubjects as `sexed'. (shrink)

This thesis is an evaluation of the badness of disability and equality. It argues that disability poses a problem for equality and that, given the new advances in reproductive and gene technologies, egalitarians should strive to give an answer to how we should best reduce the inequality between disabled and non-disabled individuals of future generations. To support the claim that disabilities pose a problem for equality, I argue against the recently proposed Mere Difference View of disability. Firstly, (...) the view is not successful in responding to why, if disabilities are neutral, inflicting disability is still impermissible. Secondly, some intellectual disabilities, for example, do not bring about positive features capable of compensating for the negative features that they also bring about. If some disabilities are bad states of being, some disabled individuals will be worse off than non-disabled individuals other things being equal. Given that disabled individuals are subject to inequality due to their disability, I analyse how able traditional compensatory accounts of egalitarian justice are when it comes to improving this inequality. I conclude that given the existence of intellectual disabilities, traditional compensatory accounts are not fully satisfactory and that egalitarians should look at whether other means, like enhancements and preventive techniques, would do this job better. Paradoxically, techniques that lead to the reduction in the incidence of disabilities make things worse with respect to one new aspect of inequality, namely the concentration of inequality. In scenarios of disability reduction, where there are only a few remaining disabled individuals and a great number of non-disabled individuals, disabled individuals would be worse off than a great number of non-disabled individuals. This situation can potentially also have a negative impact in the wellbeing of the few remaining disabled individuals if the fact that disabled individuals become a very small minority puts less pressure in society to accommodate them. I conclude that reducing the incidence of disabilities can make things worse for inequality in at least one respect. This conclusion has crucial consequences for policy making. I recognise that the question remains about how this aspect should be weighed against the fact that scenarios of disability reduction promote utility - they contain more individuals with higher wellbeing - and against the fact that, under views that ascribe positive value to relations of equality, scenarios of disability reduction would also be, in one way, promoters of equality. (shrink)

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled patients may (...) also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

Recent debate among bioethicists concerns the potential to enhance human beings’ physical or cognitive capacities by means of genetic, pharmacological, cybernetic, or surgical interventions. Between “transhumanists,” who argue for unreserved enhancement of human capabilities, and “bioconservatives,” who warn against any non-therapeutic manipulation of humanity’s natural condition, lie those who support limited forms of enhancement for the sake of individual and collective human flourishing. Many scholars representing these views also share a concern over the status and interests of human beings with (...) various types of cognitive and physical disabilities, some of which may be ameliorable by enhancement interventions. The question addressed in this paper is whether valuing the enhancement of human capabilities may be reconciled with valuing the existence and phenomenological experiences of human beings with various disabilities. Can we value enhanced capabilities without disvaluing those whose capabilities fall below a defined threshold of “normal function”? Furthermore, if certain forms of disability, particularly cognitive disabilities, negatively impact one’s flourishing, could the enhancement of one’s cognitive capacities through biotechnological means enhance one’s flourishing. (shrink)

This article critiques the analysis of the comic and the tragic in disability discourse and the text by Ian Stronach and Julie Allan, using the work of Mikhail Bakhtin on the theory of the novel, of language and of speech genres. Taking Bakhtin's notion that to speak or to write is always essentially dialogic, the article introduces particular dimensions of audience, disability, feminism and poststructuralism in an attempt to explore the social organization of disability discourse and to (...) move beyond the artifice of the text's stasis. It argues that unless critical theory is matched with critical response, institutionalized inequality demands that the authority of an individualized `disability' text written by non-disabled authors remains intact - even when it is accompanied by an undermining discussion of itself. The text is commonly decontextualized and remote, and the role of the disable reader, especially their role as audience, is reduced to a `simple' one - a vessel into which the authors' authority is poured. This represents a particular kind of audience experience that maximizes the distance between the reader and the text's performance and, in the case of Stronach and Allan's work, ultimately destabilizes their arguments. (shrink)

This paper critically engages with Tom Shakespeare’s book Disability rights and wrongs. It concentrates on his attempt to demolish the social model of disability, as well as his sketch of an “alternative” approach to understanding “disability”. Shakespeare’s critique, it is argued, does British disability studies a “wrong” by presenting it as a meagre discipline that has not been able to engage with disability and impairment effects in an analytically sophisticated fashion. What was required was a (...) measured presentation and evaluation of the rich mix of theoretical and empirically based ideas to be found in the discipline, as the groundwork for forward thinking located within a social oppression paradigm. Shakespeare’s undermining of the discipline’s credibility in the eyes of outsiders and newcomers represents a diversionary missed opportunity by an influential writer and activist.Shakespeare’s book1 has certainly stirred up debate, and invited a flurry of angry reviews, in disability studies in the UK—the social science discipline that has been developing radical ideas about disability and disablism since the 1980s. Peopled by both disabled academics and like-minded non-disabled researchers and writers, the DS community recognises that Shakespeare’s book seeks to deliver a fatal wound to what he sees as its sacred cow: the British social model of disability.Shakespeare explains that what he calls the “strong” version of the social model of disability was formulated by Michael Oliver, a leading DS writer and disability activist, on the basis of the social and political ideas advanced in the 1970s by a group of disabled individuals fighting to free themselves from what they experienced as an oppressive care system that relegated and segregated people with serious impairments to residential institutions and to the category of the unemployable.2 3 In short, the social model asserts that “disability” is not caused …. (shrink)

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

Quality-Adjusted Life Years (QALYs) and Disability-Adjusted Life Years (DALYs) are two of the most commonly used health measures to determine resource prioritization and the population burden of disease, respectively. There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or health levels of individuals. But (...) even if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality. In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits,1for disregarding fair chances in favor of utility maximization,2and for raising problems when applied in the context of variable population size.3Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people.4Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition. (shrink)

Challenging the undesirability of disability is a shared responsibility that requires us to imagine disability differently. In order to imagine disability differently, we need to understand how the neoliberal hegemonic social imagination—key to processes that create good disabled and able-bodied neoliberal subjects—works to curtail who is perceived to have a desirable body. In order to desire disability differently, we must begin with marginal, heterotopic imaginations whereby disability is not something to overcome, but rather is part (...) of a life worth living. In this article, I build on Foucault’s concepts of heterotopia, milieu, and the government of things, and Karen Barad’s agential realism, as well as draw on the work of Mel Chen and Rod Michalko in order to argue that the heterotopic imagination reconfigures how we consider disability to emerge, with whom, and where. By mobilising the heterotopic imagination, we can come to recognise that disability does not emerge as an individualised human body, but rather is an intracorporeal, non-anthropocentric multiplicity. To desire disability differently through the heterotopic imagination is not simply to allow the current formulation of disability to become desirable, but rather to radically alter how we desire disability, in addition to altering what disability is, how it is practised, and what it can be. (shrink)

Shared Musical Lives makes the case for the epistemological and ethical significance of musical experience. Music can be a source of self-knowledge and self-expression, and hence reveal important dimensions of the self to others. This knowledge - of both self and of others - has a moral force as well. Shared musical experience can transform and establish new modes of being with others, cultivate virtues, and expand the moral imagination. The term sonification (which means translating data into non-verbal audible tones) (...) provides an organizing principle for the arguments in the book.Transposing the concept into a philosophical key, this book explores two forms of sonification: first, the process by which musical experience reveals dimensions of the self and relationships with others; and second, philosophical sonification, or the critical examination of philosophical concepts,arguments, and theories in view of what musical experience reveals. These two kinds of sonification are discussed specifically in the context of disability. In this book, author Licia Carlson brings the musical lives of people with cognitive and intellectual disabilities into the foreground in order to challenge and broaden existing conceptions of disability and music and provide new ways of thinking about the philosophies of music and disability. (shrink)

I argue against Appel's recent proposal – in this JOURNAL – that there is a fundamental human right to sexual pleasure, and that therefore the sexual pleasure of severely disabled people should be publicly funded – by thereby partially legalizing prostitution. I propose an alternative that does not need to pose a new positive human right; does not need public funding; does not need the legalization of prostitution; and that would offer a better experience to the severely disabled: charitable non-profit (...) organizations whose members would voluntarily and freely provide sexual pleasure to the severely disabled. (shrink)

By ruling out questions of impairment from the social critique of disability, Disability Studies analyses establish a limit point in the field. Of course the setting of “limits” enables possibilities in multiple directions as well as fortifies boundaries of refusal. For instance, impairment becomes in DS simultaneously a productive refusal to interpret disabled bodies as inferior to non-disabled bodies and a bar to thinking through more active engagements with disability as materiality. Disability materiality such as conditions (...) produced by ecological toxicities serve as active switch-points for creative corporeal navigations of the interaction between bodies and environments.In fact in this paper we want to propose a more “lively” definition of disability materiality to existing definitions of impairment as limiting expressions of non-normative bodies. We have no useful ways of explaining disability as adaptation and it’s time we begin the process of theorizing more active ideas of materiality that extend existing ideas of disability beyond simplistic conceptions of socially rejected biologies made available by social constructivist thought. (shrink)

This article considers disabled people's involvement with the UK environmental movement. It draws on findings from qualitative research with disabled people in the UK exploring experiences of access to sustainable lifestyles. A number of experiences of disablism (the manifestation of oppression against disabled people) and ableism (assumptions and valorisations of non-disabled normality) were described. Similar issues were also identified in relevant documentary sources and from research into disabled people's experiences in the context of other movements such as the wider anti-capitalist (...) movement. These findings suggest that ableism may be a significant feature of the UK environmental movement. If this is the case, there are important implications for the wider success of this movement's aims in terms of achieving environmental protection, as well as for the ongoing exclusion experienced by disabled people with regard to pro-environmental activities. (shrink)

This article is the result of a mutual interest in the radical philosophical dialogue discussed by Martin Buber. The radical dialogue is rooted in western European values of humanism, values that are challenged because they exclude women, people with disabilities, non-western, indigenous people and sexual minorities. With our basis in radical dialogue we are discussing flaws within the very concept of dialogue, how dialogue is challenged in encounters between people with severe disabilities and their helpers, and we are proposing a (...) new interpretation of dialogue in a posthuman area. To illuminate what might be at stake in relations where power is clearly imbalanced we use Pierre Bourdieus theory of the gift when asking ourselves: “How can we understand dialogue when there apparently is one dominant giver and one receiver unable to return the gift?” Discussing this question, we draw on Rosi Braidotti and her Posthuman Critical Theory to see if we can find new grounds to build dialogue on. (shrink)

The Mental Incapacity Bill not only paves the way for euthanasia, but invites wholesale abuse and homicide, writes Jacqueline Laing. On 19 October 2004, when the Mental Capacity Bill was at its crucial committee stage, the Law Society issued a statement of ‘strong support’, claiming that it empowers patients and in no way introduces euthanasia. Laing argues that the Bill threatens the incapacitated by granting a raft of new third parties power to require that health professionals withhold ‘treatment’, which, after (...) the controversial decision in Airedale NHS Trust v Bland [1993] AC 789, includes food and fluids delivered both by tube and, in certain cases, by spoon. The Bill further endangers the vulnerable, first, by allowing non-therapeutic research on the non-consenting mentally incapacitated, in breach of the Nuremberg Code and First Declaration of Helsinki, and secondly, by permitting new agents power to undertake on people with learning disabilities certain questionable procedures currently authorised by the High Court, such as non-voluntary sterilisation. (shrink)

In this article, I will propose a theoretical argument for the prohibition of unequal treatment of disabled and non-disabled individuals in health care resource allocation. I will first consider an argument for unequal treatment, which was put forward by Singer et al, and elucidate its far-reaching scope. I will then use the same argument in order to derive an argument that would prohibit unequal treatment of disabled and non-disabled individuals in almost all cases of health care allocation.Resumen:En este artículo propongo (...) un argumento teórico para prohibir el trato desigual entre personas discapacitadas y no discapacitadas en la distribución de recursos médicos. En primer lugar analizaré un argumento que apoya un trato desigual, el cual fue presentado por Singer y otros, y trataré de establecer sus alcances. Después utilizaré ese mismo argumento para derivar otro que nos llevaría a prohibir el trato desigual entre discapacitados y no discapacitados en casi todos los casos de distribución de recursos médicos. (shrink)

It is widely recognized that prioritizing health care resources by their relative cost-effectiveness can result in lower priority for the treatment of disabled persons than otherwise similar non-disabled persons. I distinguish six different ways in which this discrimination against the disabled can occur. I then spell out and evaluate the following moral objections to this discrimination, most of which capture an aspect of its unethical character: it implies that disabled persons' lives are of lesser value than those of non-disabled persons; (...) it constitutes “double jeopardy” or violates Frances Kamm's non-linkage principle; it conflicts with equality of opportunity; it conflicts with fairness, which requires ignoring (some/most) differential impacts of treatment; it wrongly gives lower priority to disabled persons for equally effective treatment; it conflicts with giving all persons an equal chance to reach their full potential; and, it is in conflict with giving priority to the worse off. (shrink)

In the Paraplegia Case, we must choose either to preserve the life of a paraplegic for 10 years or that of someone in full health for the same duration. Non-consequentialists reject a benefit-maximising view, which holds that since the person in full health will have a higher quality of life, we ought to save him straightaway. In the Unequal Lifespan Case, we face a choice between saving one person for 5 years in full health and another for 25 years in (...) full health. Frances Kamm has recently unfurled an Equal Respect Argument in an effort to support the position that while we ought to give each person a 50% chance of being saved in the Paraplegia Case, we are morally permitted to save straightaway the person who would live longer in the Unequal Lifespan case. The article tries to show that a Kant-inspired account of the dignity of persons is far more successful than Kamm's argument in supporting this position. The Kant-inspired account owes this success to its conceiving of respect for persons not primarily as respect for their pursuit of what is of value for them, but rather as respect for the value in them. (shrink)

The Rejected Body argues that feminist theorizing has been skewed toward non-disabled experience, and that the knowledge of people with disabilities must be integrated into feminist ethics, discussions of bodily life, and criticism of the cognitive and social authority of medicine. Among the topics it addresses are who should be identified as disabled; whether disability is biomedical, social or both; what causes disability and what could 'cure' it; and whether scientific efforts to eliminate disabling physical conditions are morally (...) justified. Wendell provides a remarkable look at how cultural attitudes towards the body contribute to the stigma of disability and to widespread unwillingness to accept and provide for the body's inevitable weakness. (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)

Prenatal and preimplantation testing technologies have offered unprecedented access to information about the genetic and congenital makeup of our prospective progeny. Future developments such as preconception testing, non-intrusive prenatal testing and more extensive preimplantation testing promise to increase that access further still. The result may be greater reproductive choice, but it also increases the burden on women and men to avail themselves of these technologies in order to avoid having a child with a disability. The overwhelming question for legislators (...) has been whether and, if so, how to regulate the use of these technologies in the face of compelling but seemingly contradictory claims about the advancement of reproductive choice and the dangers of eugenic or discriminatory effects. This book examines the evolution of this legislative oversight across a number of jurisdictions and explores the tensions and ambiguities that inform these laws. (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)

This article addresses the precarious place of transgender and gender non-cis persons in relation to their discrimination-protections in recent legal, medical, and ethical policies in the United States. At present, there exists a contradiction such that trans persons are considered "pathological" enough that they are included in the latest iteration of the American Psychiatric Association's Diagnostic and Statistical Manual (DSM-V) as "gender dysphoric," but they are not included in the category of "disabled" under the Americans with Disabilities Act (ADA). As (...) such, trans persons in America are subject to the stigma of pathology (albeit with medical treatment) without the full protections of the ADA. By contrast, transgender and non-cis-gender Americans find their queer cohorts who are HIV-positive to be fully protected by the ADA. We ask whether transgender and non-cis-gender persons should embrace their (already pathologized) personhood as a disability. Sometimes "choosing disability" affords more rights than it deploys stigma. (shrink)

In this paper, I make three arguments regarding Crisis Standards of Care developed during the COVID-19 pandemic. First, I argue against the consideration of third person quality of life judgments that deprioritize disabled or chronically ill people on a basis other than their survival, even if protocols use the language of health to justify maintaining the supposedly higher well-being of non-disabled people. Second, while it may be unavoidable that some disabled people are deprioritized by triage protocols that must consider the (...) likelihood that someone will survive intensive treatment, Crisis Standards of Care should not consider the amount or duration of treatment someone may need to survive. Finally, I argue that, rather than parsing who should be denied treatment to maximize lives saved, professional bioethicists should have put our energy into reducing the need for such choices at all by resisting the systemic injustices that drive the need for triage. (shrink)

Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbing questions to which it (...) leads. Surely parents owe it to their children to give them the best life they can? Increasingly we are able to reduce the number of babies born with disabilities and disorders. But there is a powerful new challenge to conventional thinking about the desirability of doing so: this comes from the voices of those who have these conditions. They call into question the very definition of disability. How do we justify trying to avoid bringing people like them into being? In 2002 a deaf couple used sperm donated by a friend with hereditary deafness to have a deaf baby: they took the view that deafness is not a disability, but a difference. Starting with the issues raised by this case, Jonathan Glover examines the emotive idea of 'eugenics', and the ethics of attempting to enhance people, for non-medical reasons, by means of genetic choices. Should parents be free, not only to have children free from disabilities, but to choose, for instance, the colour of their eyes or hair? This is no longer a distant prospect, but an existing power which we cannot wish away. What impact will such interventions have, both on the individuals concerned and on society as a whole? Should we try to make general improvements to the genetic make-up of human beings? Is there a central core of human nature with which we must not interfere? This beautifully clear book is written for anyone who cares about the rights and wrongs of parents' choices for their children, anyone who is concerned about our human future. Glover handles these uncomfortable questions in a controversial but always humane and sympathetic manner. (shrink)

The British Parliament stated that health services would be covered by the Disability Discrimination Act 1995 . However, when people with disabilities are at their most vulnerable, for example when in hospital or subject to medical procedures, the antidiscrimination law fails them. A review of cases indicates that when people with disabilities are subject to medical treatment, the legislative protections are allowed to vanish. Instead, medical decisions are justified on obscure notions such as “best interests”, often with irreversible or (...) even terminal results. This article examines the relevant provisions and limitations of the act, the features of notable non-treatment decisions, and the act's potential to guide future decision making. It argues that antidiscrimination legislation should be assertively applied to protect vulnerable people. (shrink)

In 'Benefit, Disability and the Non-Identity Problem', Hallvard Lillehammer uses the case of a couple who chose to have deaf children to argue against the view that impartial perspectives can provide an exhaustive account of the rightness and wrongness of particular reproductive choices. His conclusion is that the traditional approach to the non-identity problem leads to erroneous conclusions about the morality of creating disabled children. This paper will show that Lillehammer underestimates the power of impartial perspectives and exaggerates the (...) ethical force of partial perspectives, which in turn commits him to providing weak justifications for the choice made by the couple in his example case. (shrink)