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)

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.

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 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.

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)

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 (...) class='Hi'>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)

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)

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.

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)

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)

The disability rights movement 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)

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)

The right to active participation by disabled people in academic research has been discussed at length in recent years, along with the potential for such research to function as a tool in challenging oppression and pursuing disability rights. Significant ethical, legal and methodological dilemmas arise, however, in circumstances where a disabled person loses the capacity to provide informed consent to such participation. In this article, I consider disability politics and academic research in the context of the Mental (...) Capacity Act 2005, which sets out in Anglo-Welsh law the circumstances and requirements for research participation by individuals lacking the capacity to provide informed consent. Drawing on my own perspective on research participation in relation to physical and psychosocial disability, I consider the implications of my potential future loss of capacity for my right to participate in disability-related research. I examine the barriers to such participation and suggest that partial solutions may be found in the advance decision-making and advance care-planning frameworks of the MCA 2005 and related policy, but that current legislative and policy frameworks nevertheless still curtail my rights with regard to research participation on loss of capacity to consent. In so doing, I seek to provoke debate concerning what this legislative provision means for the disability rights movement, and the possibilities and challenges it presents to the movement’s commitment to ‘nothing about us without us’. (shrink)

While fetal surgery—and pregnancy termination as a possible therapeutic alternative—have been examined in a number of studies, very few have addressed the issues and tensions that arise when prenat...

PurposeInternational organizations are working on an unprecedented number of development initiatives relevant to people with disabilities. This makes it essential for the global disability community to be able to participate effectively in the decision-making processes associated with these programs. In light of this, this study aims to explore whether information technologies can help create a more inclusive global governance, forming the basis for equitable development for people with disabilities.Design/methodology/approachThe results of a global survey of disabled people’s organizations’ leaders are (...) discussed. This asked disability rights advocates about their experiences with accessibility and barriers to effective participation, low-cost accessible technological solutions for remote participation and freely available “off-the-shelf” online technologies – in particular social media platforms – to bridge the gap between the disability community and global governance processes.FindingsAlthough only a small number of international conferences offer accessible virtual participation through web conferencing and other tools, responses from DPO advocates suggest that there is a strong demand for this technology and provide evidence of its potential for improving accessibility in global governance. Furthermore, disability organizations all over the world have embraced social media platforms to liaise with their grassroots and enable them to part-take in policy-making processes.Originality/valueThis study highlights community-backed technological solutions to persisting barriers that systematically exclude people with disabilities from fundamental global governance processes, illuminating the nexus of disability, accessibility, and participation. (shrink)

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)

Laing contends that the practice of eugenics has not disappeared. Conceptually related to the utilitarian and Social Darwinist worldview and historically evolving out of the practice of slavery, it led to some of the most spectacular human rights abuses in human history. The compulsory sterilization of and experimentation on those deemed “undesirable” and “unfit” in many technologically developed states like the US, Scandinavia, and Japan, led inexorably and most systematically to Nazi Germany with the elimination of countless millions of (...) people for their race, class, political views, sexuality, religion or disability. Biometric databases exposing one’s medical data, DNA defects, IQ, political views, while in some ways appearing socially useful, demonstrates how vulnerable humans are, not just at the hands of political malfeasors and tyrants but insurance companies, government snoopers, false friends and determined social engineers. (shrink)

Infertile women in the developing world face an additional layer of vulnerability compared to their counterparts in the developed world due to social, cultural, political, and socioeconomic factors that truly render their infertility a disability. After exploring how infertility in the developing world fits the World Health Organization’s biopsychosocial model of disability, we will argue that feminists and disability rights proponents should jointly articulate and advocate for change.

I explore the usefulness of Martha Nussbaum's capabilities approach in regard to the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims at empowering people with disabilities by granting them a number of civil and political, but also economic, social and cultural rights. Implementing the CRPD will clearly be politically challenging and also very expensive for states. Thus, questions might arise as to whether the requirements set in the CRPD can be justified from an (...) ethical perspective. I will first investigate if Nussbaum's capabilities approach provides support for the rights claimed in the CRPD. Second, I will investigate to what extent Nussbaum's capabilities approach is a useful tool to set priorities among rights in the course of the implementation of the convention. This is an urgent question because seen realistically, it will not be possible to realize all rights at once and thus some rights need to receive greater priority than others. I will argue that the capabilities approach can be regarded as supporting the rights specified in the CRPD, but that it proves unable to guide the implementation process due to an insufficient grounding of the capabilities. Employing the capabilities approach thus leads to only limited results. (shrink)

This essay discusses the ethical challenges and dilemmas in allocating scarce medical resources during the COVID-19 pandemic, using the German legislative process as a starting point. It is guided by the right to non-discrimination of people with disability and generally contrasts utilitarian and rights-based principles of allocation. Three approaches that were suggested in the German discussion, are presented, the lottery principle, the first come first served principle and the probability to survive principle. Arguments in favour and against each (...) principle are discussed. The focus is on the utilitarian probability to survive principle, which was adopted in German legislation in 2022, and its discriminatory potential against people with disability. The essay suggests ways to mitigate the concerns of discrimination related to the probability to survive principle. It concludes that resolving the triage dilemma requires a balanced approach between utilitarian and rights-based concerns, which promotes both maximising the number of patients surviving and the right not to be discriminated against and be treated equally. It calls for a further debate on how many ethical values such as equity, fairness and non-discrimination we are willing to sacrifice for a higher number of survivors and when we are willing to sacrifice survivors to secure ethical values. (shrink)

This paper explores the questions of equality and social justice for people with disabilities in sports and, by extension, other civil societal practices that involve the pursuit of excellence. I argue that such practices come within the purview of justice depending on the interplay between political activism, institutionalized anti-discrimination statutes such as the ADA, and the internal norms of a practice. There are many ways to interpret the ADA, and a successful argument for a right to a pursuit of excellence (...) requires that the ADA be understood as an anticaste principle. That interpretation allows me to show how even voluntary, ostensibly apolitical social practices can stigmatize groups of people ??? people with disabilities, for example ??? and how such practices can be refigured to bring about social justice. (shrink)

The merit system is based on a person’s ability to achieve. The concept of merit hence rejects a process that awards any particular entitlement explicitly based on disability. Brian Barry says that under the merit principle, people can compete for positions or advantage. This paper argues that the idea of merit, as explained by Barry, is unjust. Iris Marion Young points out that a person with cognitive disability faces a different situation compared to other people. Under normal circumstances, (...) persons can have skills that enable them to do things with ease, something that is not readily available to individuals with autism or Asperger’s syndrome. The problem is also exacerbated by policies that do not recognize the diverse needs of individuals with impairment. In this regard, practical ethics demands that a law or national policy must ensure a level playing field for everyone. (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)

It goes almost without saying that there are no academic bioethical debates that are unique to the United Kingdom. The debates in which U.K. bioethicists become involved take place in international journals and in books with a worldwide readership. The contributions of those from these shores are frequently made in response to work by academics from the United States, Australia, Scandinavia, and a whole host of other countries.