In this brief paper, a case is made for the moral permissibility of assisted dying. The paper proceeds by highlighting a common critique from within disability rights scholarship and advocacy that emphasizes the vulnerability of people with disabilities and the risks associated with permitting assisted dying. The paper suggests that because medicine necessarily involves risk, primarily through the high likelihood of medical error, that the risk and harm being utilized as a justification to prohibit assisted dying by (...) disability rights scholars is in fact, not conceptually or morally unique. Finally, it is argued that because all medicine involves a risk of harm, and assisted dying is not unique in this respect, that one cannot effectively launch a critique of assisted dying on this basis. (shrink)

This essay critiques the fiercely utilitarian allocation scheme of Cameron et al. Children have no hope of recovery if their lives are cut short based on administrative protocols that misrepresent the nature of their conditions. Unilateral futility judgements - especially those based on a false predicate - are discriminatory. When considering the best interests of children, we should see possibility in disability and not advance ill-informed utilitarianism.

BackgroundThe expectation of pandemic-induced severe resource shortages has prompted authorities to draft and update frameworks to guide clinical decision-making and patient triage. While these documents differ in scope, they share a utilitarian focus on the maximization of benefit. This utilitarian view necessarily marginalizes certain groups, in particular individuals with increased medical needs.Main bodyHere, we posit that engagement with the disability critique demands that we broaden our understandings of justice and fairness in clinical decision-making and patient triage. We propose (...) the capabilities theory, which recognizes that justice requires a range of positive capabilities/freedoms conducive to the achievement of meaningful life goals, as a means to do so. Informed by a disability rights critique of the clinical response to the pandemic, we offer direction for the construction of future clinical triage protocols which will avoid ableist biases by incorporating a broader apprehension of what it means to be human.ConclusionThe clinical pandemic response, codified across triage protocols, should embrace a form of justice which incorporates a vision of pluralistic human capabilities and a valuing of positive freedoms. (shrink)

In response to three papers about sex and disability published in this journal, I offer a critique of existing arguments and a suggestion about how the debate should be reframed going forward. Jacob M. Appel argues that disabled individuals have a right to sex and should receive a special exemption to the general prohibition of prostitution. Ezio Di Nucci and Frej Klem Thomsen separately argue contra Appel that an appeal to sex rights cannot justify such an exemption. (...) I argue that Appel’s argument fails, but not for the reasons Di Nucci and Thomsen propose, as they have missed the most pressing objection to Appel’s argument: Appel falsely presumes that we never have good reasons to restrict someone’s sexual liberty rights. More importantly, there is a major flaw in the way that all three authors frame their positive accounts. They focus on disability as a proxy for sexual exclusion, when these categories should be pulled apart: some are sexually excluded who are not disabled, while some who are disabled are not sexually excluded. I conclude that it would be less socially harmful and more productive to focus directly on sexual exclusion per se rather than on disability as a proxy for sexual exclusion. (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)

Many disabled individuals adamantly oppose medical assistance in dying, quite rightly referencing pervasive ableism and, euthanasia’s dark history in the Aktion T4 program of Nazi Germany in which...

The disability rights movement grounds material critiques of the treatment of people with disabilities in a social constructionist perspective, locating disability in the social rather than physical realm, and demedicalizing the concept of disability. However, this conceptualization is threatened by the medicalization of nonnormative erections as the biomedical pathology erectile dysfunction (ED). Although use of medical treatments for ED can have positive outcomes for individuals, the medical community's tendency to include sexual difference in the rubric of (...) disability threatens to remedicalize that category. Furthermore, medicalized conceptions of ED often serve to refocus sexuality around phallocentric, normative sex acts and gender roles, undoing the deconstructive work of disability sex studies. Finally, although aging Western populations targeted for ED treatment represent potentially expanded bases for disability movement activism, the pathologizing of nonnormative sexuality may have the power to instead focus this group on individualistic use of medical interventions geared toward “normalcy.”. (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)

The article addresses the problem of disability in the context of reproductive decisions based on genetic information. It poses the question of whether selective procreation should be considered as a moral obligation of prospective parents. To answer this question, a number of different ethical approaches to the problem are presented and critically analysed: the utilitarian; Julian Savulescu's principle of procreative beneficence; the rights-based. The main thesis of the article is that these approaches fail to provide any appealing principles (...) on which reproductive decisions should be based. They constitute failures of imagination which may result in counter-intuitive moral judgments about both life with disability and genetic selection. A full appreciation of the ethical significance of recognition in procreative decisions leads to a more nuanced and morally satisfying view than other leading alternatives presented in the article. (shrink)

This paper explores the interconnectedness of persons with disabilities, technologies and the environment by problematizing Western notions of the independent, autonomous subject. Drawing from Deleuze and Guattari’s reconfiguration of the static subject as active becoming, prevailing discourses valorizing independence are critiqued as contributing to the marginalization of bodies marked as disabled. Three examples of disability “dependencies”—man-dog, man-machine, and woman-woman connectivities—are used to illustrate that subjectivity is partial and transitory. Disability connectivity thus serves a signpost for an expanded understanding (...) of subjectivity and suggests a radically altered ethics that is no longer premised on individual rights. (shrink)

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End-of-Life Decision-Making report, (...) published in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision-making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities. (shrink)

Disability and long term incurable illness still attract a variety of demonisation and prejudice. This includes many of the same kinds of hostility that have faced women. Disabled people are blamed for their condition, regarded as bestial, grotesque and unclean. They are excluded from ritual spaces by Levitical law, modern prejudice and practical indifference. Feminist Theology has sometimes contributed to prevailing hostility, or at least, failed to counter it, in its insistence on the sacredness of the body. On the (...) other hand, Feminist Theology can provide a method of deconstructing the religious texts and imagery that make devalued people effectively invisible. Feminist critique of patriarchal structures, campaigns for full human rights, and consciously inclusive communities may offer a route for wider inclusivity and celebration of diversity. Eco-feminism is built on a framework within which scientific and medical advances may be properly and critically examined. (shrink)

Having encountered landmines in offering a critique of philosophy based on my experience as the mother of a cognitively disabled daughter, I ask, “Should I continue?” I defend the idea that pursuing this project is of a piece with the invisible care labor that is done by people with disabilities and their families. The value of attempting to influence philosophical conceptions of cognitive disability by virtue of this experience is justified by an inextricable relationship between the personal, the (...) political, and the philosophical. If one grants that the “special relationship” between mother and child requires moral recognition, then I need first to make vivid the case that this relationship in the case of a child who lacks some “normal capacities” is indistinguishable from any mother‐child relationship. If this is so, then I believe I can make a case that has as its conclusion that the moral personhood of even the severely cognitively disabled must be granted. Moreover, such recognition, I argue, necessitates the recognition of others who bear no special relationships to the child. (shrink)

In the helpful article “Why Bioethics Needs a Disability Moral Psychology,” Joseph Stramondo adds to the critique of actually existing bioethics and explains why disability activists and scholars so often find fault with the arguments of bioethicists. He is careful not to stereotype either community—rightly, given that bioethicists endorse positions as disparate as utilitarianism, deontology, virtue ethics, and feminist ethics, among others. Although Stramondo never explicitly mentions utilitarians or liberals, it seems probable that these are the main (...) targets of his discontent. The disability community, as he concedes, is also a broad church. Yet for this reason, I do not believe that you can read off positions on bioethics questions from either disability embodiment or disability organization affiliation. (shrink)

In both the literal and metaphorical senses, it seemed as if 1970s America was running out of gas. The decade not only witnessed long lines at gas stations but a citizenry that had grown weary and disillusioned. High unemployment, runaway inflation, and the energy crisis, caused in part by U.S. dependence on Arab oil, characterized an increasingly bleak economic situation. As Edward D. Berkowitz demonstrates, the end of the postwar economic boom, Watergate, and defeat in Vietnam led to an unraveling (...) of the national consensus. During the decade, ideas about the United States, how it should be governed, and how its economy should be managed changed dramatically. Berkowitz argues that the postwar faith in sweeping social programs and a global U.S. mission was replaced by a more skeptical attitude about government's ability to positively affect society. From Woody Allen to Watergate, from the decline of the steel industry to the rise of Bill Gates, and from Saturday Night Fever to the Sunday morning fervor of evangelical preachers, Berkowitz captures the history, tone, and spirit of the seventies. He explores the decade's major political events and movements, including the rise and fall of détente, congressional reform, changes in healthcare policies, and the hostage crisis in Iran. The seventies also gave birth to several social movements and the "rights revolution," in which women, gays and lesbians, and people with disabilities all successfully fought for greater legal and social recognition. At the same time, reaction to these social movements as well as the issue of abortion introduced a new facet into American political life-the rise of powerful, politically conservative religious organizations and activists. Berkowitz also considers important shifts in American popular culture, recounting the creative renaissance in American film as well as the birth of the Hollywood blockbuster. He discusses how television programs such as All in the Family and Charlie's Angels offered Americans both a reflection of and an escape from the problems gripping the country. (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment (...) to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

We propose six guideposts that states and hospitals should follow to respect disability rights when designing policies for the allocation of scarce, lifesaving medical treatments. Four relate to criteria for decisions. First, do not use categorical exclusions, especially ones based on disability or diagnosis. Second, do not use perceived quality of life. Third, use hospital survival and near-term prognosis (e.g., death expected within a few years despite treatment) but not long-term life expectancy. Fourth, when patients who use (...) ventilators in their daily lives (e.g., home ventilation) present to acute care hospitals, their personal ventilators should not be reallocated to other patients. Fifth, designate triage officers to assess patients individually on the basis of objective medical evidence, not stereotypes or assumptions. Sixth, include disability rights advocates in policy development and dissemination. (shrink)

In this article, I consider the ideologies that emerge when disability and LGBTQ rights advocates' ubiquitous calls for visibility collide. I argue that contemporary visibility politics encourage the production of post-racial and post-spatial ideologies. In demanding visibility, disability and LGBTQ rights advocates ignore, ironically, visible markers of difference and assume that being “out, loud, and proud” is desirable trans-geographically. I bring together disability studies and queer rural studies—fields that have engaged in remarkably little dialogue—to analyze (...) activist calls for LGBTQ and disability visibility. The discourses evident in such calls transcend movements and virtual spaces and emerge as some of the LGBTQ women in the rural Midwest whom I interviewed discuss their relations to LGBTQ sexuality and disability. I analyze several cases to illustrate how visibility discourses compel the erasure of material bodies, and in the process, render certain experiences obsolete. I close by considering how my critique of visibility discourses might influence critical discussions of identity politics more broadly. (shrink)

This article examines the unique disadvantages experienced by Black people and other people of color with substance use disorder in health care, and argues that an intersectional approach to enforcing disability rights laws offer an opportunity to ameliorate some of the harms of oppression to this population.

By considering the death of the disability activist Engracia Figueroa as the consequence of her wheelchair being damaged by an airline, this article asks whether law could accommodate a definition of legal personhood that encompasses the possibility of bodies augmented by prosthetics, technology, and mobility aids. The use of mobility aids by disabled people and the role of prosthetic penises in so-called ‘gender fraud’ cases offer two useful provocations to consider the ways in which legal personhood, if defined as (...) largely mapping on to an ideal, normative body, is becoming an increasingly inadequate legal concept in the modern age. Drawing on the work of Donna Haraway and the figure of the cyborg, this article argues that a more protean, flexible, and fluctuating understanding of legal personhood would offer both a more accurate and utopian conception of the body in law than the current essentialist approach found in a number of legal areas and particularly in English criminal law. (shrink)

Drawing from contemporary blog data, this article examines an emerging project termed “neuroqueer.” Neuroqueer is a collaboration of activists, academics, and bloggers engaging in online community building. Neuroqueer requires those who engage in it to disidentify from both oppressive dominant and counterculture identities that perpetuate destructive medical model discourses of cure. It is a queer/crip response to discussions about gender, sexuality, and disability as pathology that works to deconstruct normative identity categories. Blog members employ neuroqueer practices to subversively combat (...) exclusion through rejection of able-hetero assimilation and counteridentification in favor of disidentification. Of particular interest for this special issue are the ways in which neuroqueer perspectives build more fluid conceptualizations of both gender and intersectionality through conscious disidentification from neurotypical norms and medical notions of cure on which they are often unconsciously based. (shrink)

This contribution explores disability rights protection in Inter-American States within the framework of the OAS and in the context of the obligations established under the CIADDIS and the CRPD. Following the classical division between ‘primary’ and ‘secondary’ rules, the contribution first sketches key regulatory initiatives in the area of disability rights and second considers compliance and enforcement mechanisms. Along these lines, the first section illustrates similarities and differences between the CIADDIS and the CRPD and, within this (...) framework, essential regional regulatory initiatives. The second section assesses disability rights in select countries, based on periodic reports under the CIADDIS and CRPD. The section examines the four largest countries by population in the region, notably, the United States of America (US), Mexico, Brazil and Colombia. The third section explores the enforcement of disability rights via key cases before the Inter-American Commission on Human Rights (IAComHR) and the Inter-American Court of Human Rights (IACtHR). The purpose is providing a comprehensive understanding of disability rights in the region and identifying key regulatory problems and ways forward. (shrink)

This paper asks whether statutory social insurance programs, which provide contributory tax-based income support to people with disabilities, are compatible with the disability rights movement's ideas. Central to the movement that led to the Americans with Disabilities Act is the insight that physical or mental conditions do not disable; barriers created by the environment or by social attitudes keep persons with physical or mental differences from participating in society as equals.The conflict between the civil rights approach and (...) insurance seems apparent. A person takes out insurance to deal with tragedy, such as premature death, or damage, such as accidental harm to an automobile or home. Social insurance, for example, the United States Social Security old-age and disability programs, consists of government-run insurance to cover risks of advanced age and disability for which the private market has not provided affordable coverage. But the civil rights approach to disability posits that disability is not a risk, not tragedy, and not a damage or defect. Instead it is a maladaptation of society to human variation. This paper argues that a justification remains for social insurance under the civil rights approach to disability, and further suggests that expansion of social insurance for disability is both compatible with disability rights principles and supported by wise public policy. (shrink)

Can the rights of the disabled be justified by John Locke's theory of natural rights? Does an "ethics of caring" offer a better framework for considering these rights? When can we end a human life? With Anita Silvers, Patrick Sullivan, and John Loughney.

Can the rights of the disabled be justified by John Locke's theory of natural rights? Does an "ethics of caring" offer a better framework for considering these rights? When can we end a human life? With Anita Silvers, Patrick Sullivan, and John Loughney.

The case of Charlie Gard, an infant with a genetic illness whose parents sought experimental treatment in the USA, brought important debates about the moral status of parents and children to the public eye. After setting out the facts of the case, this article considers some of these debates through the lens of parental rights. Parental rights are most commonly based on the promotion of a child’s welfare; however, in Charlie’s case, promotion of Charlie’s welfare cannot explain every (...) fact of the case. Indeed, some seem most logically to extend from intrinsic parental rights, that is, parental rights that exist independent of welfare promotion. I observe that a strong claim for intrinsic parental rights can be built on arguments for genetic propriety and children’s limited personhood. Critique of these arguments suggests the scope of parental rights remains limited: property rights entail proper use; non-personhood includes only a small cohort of very young or seriously intellectually disabled children and the uniqueness of parental genetic connection is limited. Moreover, there are cogent arguments about parents’ competence to make judgements, and public interest arguments against allowing access to experimental treatment. Nevertheless, while arguments based on propriety may raise concerns about the attitude involved in envisioning children as property, I conclude that these arguments do appear to offer a prima facie case for a parental right to seek experimental treatment in certain limited circumstances. (shrink)

The increasing focus on disability rights—as found, for instance, in the U.N. Convention on the Rights of Persons with Disabilities —challenges philosophical imaginaries. This article broadens the philosophical imaginary of freedom by exploring the relation of dependence, independence, and interdependence in the lives of people with disabilities. It argues that traditional concepts of freedom are rather insensitive to difference within humanity, and that the lives of people with severe disabilities challenge philosophers to argue and conceptualize freedom not (...) only as independence and interdependence but also as dependence. After tracing this need through a Hegelian understanding, via Julia Kristeva's work on disability, and finally the CRPD, it concludes that a unified solution might not be possible. Hence, it argues that disability issues necessitate philosophical modesty. (shrink)

Disability rights advocates have traditionally denigrated charity as politically counterproductive and inherently demeaning. This article argues that this perspective mischaracterizes charity of a religious kind. Religious charity, I argue, must be understood immanently, through an exploration of the virtues cultivated in particular religious organizations. I consider two Catholic charities: L’Arche, a community for intellectually disabled people, and the end-of-life care facility Our Lady of Perpetual Help Home. At each organization, individual acts of charity are emblematic of an underlying (...) virtue that I call caritas or charity-love. This transforms them into gestures that advance goals that are consonant with those of the disability rights movement. In the case of Our Lady, this is even true of pity, perhaps the most despised emotion of the disability rights tradition. But while disability rights advocates have characterized pity as essentially devaluing disabled people, at Our Lady, it is an emotion that freely circulates, undoing hierarchical distinctions between ability and disability, and even human and divine. This redefined notion of pity—which I term misericordia—can, I conclude provide a new foundation for disability politics, one that radicalizes the goals of the disability rights movement, while also positing objectives that go beyond legal compliance. (shrink)

Assisted dying is a divisive and controversial topic and it is therefore desirable that a broad range of interests inform any proposed policy changes. The purpose of this study is to collect and synthesize the views of an important stakeholder group—namely people with disabilities —as expressed by disability rights organisations in Great Britain. Parliamentary consultations were reviewed, together with an examination of the contemporary positions of a wide range of DROs. Our analysis revealed that the vast majority do (...) not have a clear public stance; those that do exhibit a significant diversity of opinion. DROs opposing legislation on assisted dying have argued that it would be premature, misguided, inequitable and culturally undesirable. Some specify conditions that would have to be satisfied before they could support legalisation, such as radical improvements in health and social care services and the elimination of discrimination against PwD. DROs supporting assisted dying maintain that a change in the law would promote autonomy, end intense suffering, can be delivered safely and is supported by the DRO’s membership. The discussion considers the reasons why several DROs adopt a neutral stance and the argument is made that, whatever their overarching stance on the issue, DROs need to be involved in the policy debate so that the crucial perspectives of PwD are heard and addressed. This is an important message for countries around the world that permit, or are considering legalising, assisted dying. (shrink)

"In these essays, health care professionals, scholars, and members of the disability community debate the implications of prenatal testing for people with disabilitties and for parent-child relationships generally."--Cover.

The disability rights movement (DRM) has often been closely associated with the liberal values of individual choice and independence, or the ‘ethics of agency’, where enhancing the capacity to make autonomous decisions in various policy and practice-based contexts is said to facilitate disabled people's well-being. Nevertheless, other liberal values are derived from what will be termed here the ‘ethics of self-acceptance’. The latter is more disguised in liberalism and the DRM, as rather than emphasising the capacity to make (...) autonomous decisions, self-acceptance focuses on the positive acceptance of individual limitations, but again to enhance well-being. The further argument is that while the ethics of agency and self-acceptance often logically cohere and overlap, through promoting the values of self-respect and relational autonomy, dilemmas arise from our asymmetrical, or uneven, dispositions towards time, and present and future lives and experiences. For example, positively accepting individual limitations allows for a present-oriented immersion in ‘the moment’, but which often requires some suspension of future-oriented goals and aspirations. Understanding some of the implications of this asymmetry, and the dilemmas arising from it, provide important insights concerning approaches to physical and intellectual impairments and the subsequent debates within the DRM, social policy and welfare practice. (shrink)

Tom Shakepeare is an eminent, and somewhat controversial, contributor to disability studies. As he outlines, part of the explanation for his controversial status within that field stems from his engagement with disciplines outside it, including genetics and bioethics. For many in the field of disability studies, no genuine engagement should be sought with scholars in genetics or bioethics because—so the party line goes—these areas of study are inherently opposed to disability rights and otherwise pose genuine threats (...) to the status of disabled people. The present volume is unlikely to do much to reduce his controversial status.The book is divided into three parts. The first presents a detailed criticism of the social model with some, more positive, proposals concerning how disability is best conceived. The second part—perhaps the one that will be of most interest to JME readers—concerns bioethical issues in disability. The final part focuses on themes such as care, charity, intimacy and the role of the non-disabled in “the world of disability”.The main reason why this book is unlikely to reduce Shakespeare’s controversial status is that its central theme is a sustained attack on the so-called and widely held “social model” of disability. According to this model, the causes of disability lie in the social environment, not within the individual. So, change the social environment in appropriate ways, and disability disappears. Shakespeare illustrates the various ways in which this model is analytically flawed and has had a negative effect upon disability studies, research and the lives of disabled people. …. (shrink)

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence (...) in relation to other human characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights. (shrink)

As a member of the New York State Task Force on Life and the Law and the author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, the author draws upon his work as a clinical ethicist during the COVID-19 Spring surge in New York to analyze the impact of ventilator allocation guidelines proposed by the Task Force on people with disorders of consciousness. While a non-discriminatory methodology was intended by the Task Force, the author (...) concludes that the guidelines would have discriminated against people with disorders of consciousness had they been promulgated. This was due to errors in exclusion criteria, the utilization of the Sequential Organ Failure Assessment (SOFA) score, and the Glasgow Coma Scale which assesses motor output and not consciousness. While allocation and triage decisions may be neccessary during a pandemic, the ethical integrity of these determinations depend upon proper metrics. (shrink)

Tensions exist between the disability rights movement and the work of many bioethicists. These reveal themselves in a major recent book on bioethics and genetics, From Chance to Choice: Genetics and Justice. This book defends certain genetic policies against criticisms from disability rights advocates, in part by arguing that it is possible to accept both the genetic policies and the rights of people with impairments. However, a close reading of the book reveals a series of (...) direct moral criticisms of the disability rights movement. The criticisms go beyond a defense of genetic policies from the criticisms of disability rights advocates. The disability rights movement is said not to have the same moral legitimacy as other civil rights movements, such as those for women or "racial" minorities. This paper documents, and in some cases shows the flaws within, these challenges to the disability rights movement. (shrink)

In Dependent Rational Animals, Alasdair MacIntyre attempts to ground the virtues in a biological account of humans. Drawing from this attempt, he also tries to answer the question of why we should care for the severely disabled. MacIntyre’s difficulty in answering this question begins with the fact that his communities of practices do not naturally include the severely disabled within their membership and care. In response to this difficulty, he provides four reasons for why we should care for the severely (...) disabled. I argue that three of these reasons are inadequate, and that the fourth is incomplete although it does point in a promising direction. I conclude that a more satisfactory answer requires a further extension of the central development from After Virtue to Dependent Rational Animals, and I draw from Wendell Berry, whose work MacIntyre admires, to provide an illuminating illustration of what such an answer might look like. (shrink)

Tom Shakepeare is an eminent, and somewhat controversial, contributor to disability studies. As he outlines, part of the explanation for his controversial status within that field stems from his engagement with disciplines outside it, including genetics and bioethics. For many in the field of disability studies, no genuine engagement should be sought with scholars in genetics or bioethics because—so the party line goes—these areas of study are inherently opposed to disability rights and otherwise pose genuine threats (...) to the status of disabled people. The present volume is unlikely to do much to reduce his controversial status.The book is divided into three parts. The first presents a detailed criticism of the social model with some, more positive, proposals concerning how disability is best conceived. The second part—perhaps the one that will be of most interest to JME readers—concerns bioethical issues in disability . The final part focuses on themes such as care, charity, intimacy and the role of the non-disabled in “the world of disability”.The main reason why this book is unlikely to reduce Shakespeare’s controversial status is that its central theme is a sustained attack on the so-called and widely held “social model” of disability. According to this model, the causes of disability lie in the social environment, not within the individual. So, change the social environment in appropriate ways, and disability disappears. Shakespeare illustrates the various ways in which this model is analytically flawed and has had a negative effect upon disability studies, research and the lives of disabled people. …. (shrink)

This article studies the response of the US disability community to the prevalent assumption that disabled people do not have a future, in the form of the disability rights movement. It provides an exploratory discussion of the key role played by utopianism in the response. In doing so, the article adds to critical theorizing on the importance of utopia to the oppression of non-dominant groups and to transcending that oppression. I use utopian studies scholarship to interpret the (...) activities leading up to the passing of the Americans with Disabilities Act in 1990 as a minor utopia, characterized by an ambiguous, grounded, and provisional effort to imagine alternative ways of being. I articulate the central role played by a positive vision of disability and disabled people for this inversion of the historically negative relationship between utopia and disability. The article turns to disability activists to show that the movement countered exclusionary utopian approaches by acting as if it had a right to envision and enact a different, better future for all from the perspective of disability and disabled people. (shrink)