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)

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)

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)

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)

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)

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)

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)

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)

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)

The Convention on the Rights of Persons with Disabilities (CRPD) came into force in 2008. People with disabilities, including people with psychosocial disabilities, were instrumental to its development. Article 12 and Article 14 of the CRPD, which respectively affirm the universal legal capacity and right to liberty of persons with disabilities, were viewed as key victories by disability rights movements. These provisions are particularly important for people with psychosocial disabilities who are routinely subjected to human rights (...) violations through psychiatric detainment and involuntary treatment authorized under domestic mental health legislation in many states. We aim to advance discourse surrounding the CRPD and its development by centring mad peoples’ voices and individuals with lived experience through a literature review and interviews with key disability rights advocates. Using Canada as a case study, we critically examine the implementation of the CRPD and the need to align mental health acts with our international human rights obligations. We argue that forced psychiatric interventions violate the rights of persons with psychosocial disabilities and cause inherent harm. There is an urgent need to move towards new paradigms of care that promote the dignity and autonomy of people with psychosocial disabilities. (shrink)

Disability is primarily a social phenomenon -- a way of being a minority, a way of facing social oppression, but not a way of being inherently or intrinsically worse off. This is how disability is understood in the Disability Rights and Disability Pride movements; but there is a massive disconnect with the way disability is typically viewed within analytic philosophy. The idea that disability is not inherently bad or sub-optimal is one that many (...) philosophers treat with open skepticism, and sometimes even with scorn. The goal of this book is to articulate and defend a version of the view of disability that is common in the Disability Rights movement. To be physically disabled is not to have a defective body, but simply to have a minority body. (shrink)

What is it for something to be a disability? Elizabeth Barnes, focusing on physical disabilities, argues that disability is a social category. It depends on the rules undergirding the judgements of the disability rights movement. Barnes’ account may strike many as implausible. I articulate the unease, in the form of three worries about Barnes’ account. It does not fully explain why the disability rights movement is constituted in such a way that it (...) only picks out paradigmatic disability traits, nor why only the traits identified by the movement as constituting experiences of social and political constraint count as disability. It also leaves out the contribution of people other than disability activists, to the definition of disability. I develop Barnes’ account. On my account, a person is disabled if she is in some state which is constitutive of some constraint on her legitimate interests. This state must be the subject of legitimate medical interest and be picked out by the disability rights movement as among the traits for which they are seeking to promote progress and change. My account addresses the worries about Barnes’ account. It is also able to include all disabilities, rather than only physical ones. (shrink)

Historically, philosophers have had little to say about justice and disability. However, in recent years and in response to disability rights movements, philosophers have started to consider the claims to justice of persons with mental and physical impairments. Importantly, some have charged that without extensive revision, social contract accounts of justice – which enjoy immense popularity among political philosophers – cannot address the needs and interests of persons with disabilities. In this article, I explain why social contract (...) accounts are thought to flounder when it comes to justice for persons with disabilities. Then I assess the merits of recent attempts to construct theories of justice inclusive of persons with disabilities. In particular, I consider Nussbaum’s capabilities approach, Kittay’s justice as caring, and various restatements of the social contract. (shrink)

The World Health Organization has in the last decade identified mental health as a priority for global health promotion and international development, to be targeted through promulgation of evidence-based medical practices, health systems reform, and respect for human rights. Yet these overlapping strategies are marked by tensions as the historical primacy of expert-led initiatives is increasingly subject to challenge by new social movements — in particular, disabled persons’ organizations. These tensions come into focus upon situating the WHO’s contributions to (...) the analysis of global mental health in light of the negotiation and early stages of implementation of the Convention on the Rights of Persons with Disabilities, particularly as it applies to persons with mental disabilities. (shrink)

This article explores how visual images of dependency and care reflect and reinforce perceptions of people who are ill, disabled, or otherwise dependent, those who sustain them, and the meaning of the work they do. Scenes of care are a valuable index for understanding cultural assumptions about who is deserving of care, how and where care should be given, and who is obligated to serve as a giver of care. It positions these images in the context of the emphasis, within (...) the disability rights movement, on independence. I argue that the insistence on independence entails a form of what Lauren Berlant calls "cruel optimism"—desire for the very things that undermine happiness and well-being—because they rely on a willful disregard of the inevitable interdependency that is a fact of all human existence, as well as the particular forms of dependency that pertain to many disabled bodies. The end of the article considers works of visual art that challenge dominant modes for representing how care is given and received. If the invisibility of caregiving is one aspect of our willful forgetting that all bodies are dependent, I'll argue that visual images of care are an essential resource for recognizing and reimagining its status in our society. One desired outcome of such reconsideration would be to complicate the meaning of autonomy—as it relates to choosing disability—as well as how the work of caregiving is acknowledged and valued. (shrink)

In developed economies, powerful legislative and regulatory frameworks, for people with disability over the last five decades, have provided major motivation for business compliance with disability in the workplaces. However, developing economy like India is marked by emergent disability legislation, weak institutional enforcement and an evolving disability rights movement. In the absence of strong institutional expectations, the private sector’s role in mainstreaming the disability agenda has been largely an act of voluntary participation. Drawing (...) upon an in-depth, multilevel, cross-functional qualitative study of four Indian information technology sector companies, this paper explores why these companies engage in pro-social corporate behaviour in favour of disability. The study locates itself in the context of conceptualization of PWD as employee stakeholders and the literature on strategic CSR. The findings reveal that strategic factors promote voluntary business engagement with disability at workplaces and contribute to understanding of workplace integration of minority employees. (shrink)

Selection against embryos that are predisposed to develop disabilities is one of the less controversial uses of embryo selection technologies. Many bio-conservatives argue that while the use of ESTs to select for non-disease-related traits, such as height and eye-colour, should be banned, their use to avoid disease and disability should be permitted. Nevertheless, there remains significant opposition, particularly from the disability rights movement, to the use of ESTs to select against disability. In this article we (...) examine whether and why the state could be justified in restricting the use of ESTs to select against disability. We first outline the challenge posed by proponents of ‘liberal eugenics’. Liberal eugenicists challenge those who defend restrictions on the use of ESTs to show why the use of these technologies would create a harm of the type and magnitude required to justify coercive measures. We argue that this challenge could be met by adverting to the risk of harms to future persons that would result from a loss of certain forms of cognitive diversity. We suggest that this risk establishes a pro tanto case for restricting selection against some disabilities, including dyslexia and Asperger's syndrome. (shrink)

Given that many people with disabilities have been excluded from political deliberation and subjected to infantilizing and degrading treatment from others, many members of the disability rights movement are understandably critical of policies and practices that speak on behalf of people with disabilities and presume to know what is really in their best interest. Yet, this analysis argues that a general principle of anti-paternalism is not desirable for disability politics. In particular, people with cognitive disabilities are (...) sometimes unable to make important decisions by themselves, and may require assistance from family members or more cognitively able and verbally fluent citizens to make their political voices and choices heard. Drawing from John Locke and Alasdair MacIntyre, this article reconsiders the relationship between paternalism and autonomy, suggesting that autonomous decisionmaking and expression are best thought of as collaborative processes undertaken between people with a range of capacities. (shrink)

What has come to be called critical disability studies is an emergent field of academic research, teaching, theory building, public scholarship, and something I'll call "educational advocacy." The critical part of critical disability studies suggests its alignment with areas of intellectual inquiry, sometimes awkwardly called identity studies, rooted in the political and social transformations of the mid-20th century brought forward by the broad civil and human rights movement. These movements pressed both the law and the social (...) order toward an expansion of rights for people previously marginalized or excluded from full participation in exercising the obligations and benefits of equal citizenship. The ideas of... (shrink)

The Japanese disability movement in the 1970s posed an important question about our inner eugenic thought. Their arguments should be one of the focuses of attention for bioethics and philosophy of life in the 21st century. Their philosophy is comparable with DPI’s declaration, “The Right to Live and be Different,” published in 2000. They thought that technology of selective abortion was dangerous because it systematically deprives us of a sense of security (=the fundamental sense of security) that our (...) existence is being accepted unconditionally. They were considered to be seeking “life studies,” which has broader and deeper meanings than contemporary bioethics. (shrink)

This article examines how disabled women relate to activism in Japan. It analyses the impact of the disability right movement on their life courses. The first part presents the history of disabled women’s activism, which emerged in the early 1970s, its internationalization and disabled women’s connections with feminist movements. Then, by examining the life paths of disabled female activists, this paper shows how they dealt with the specific constraints and obstacles they encountered in the areas of independent living, (...) marriage and motherhood. It then questions some contemporary aspects of activism that may be detrimental to disabled women, and presents initiatives aimed at eliminating some of their specific problems. (shrink)

This paper examines the movement for independent living among the Japanese with disabilities from the perspective of multiculturalism and human rights. The IL movement questions the conventional idea, widely held by Japanese without disabilities, that disabled people are in need of special care and cannot live independently in ordinary communities. The IL movement advocates: 1) the reinterpretation of “disability” as mere “difference”, 2) the equal right to autonomy and social participation for the disabled, and 3) (...) the unique right to care and support that enable the disabled to be autonomous. The IL movement thus projects a new “disability culture” that assigns different meanings to disability and calls for radical change in social relationships. The IL movement then is one of many forces that celebrates diversity and advocates pluralism in Japanese society in defiance of the myth of a “homogeneous monocultural” Japan. The IL movement highlights the right to care as a basic human right which is a precondition for the right to autonomy. Consequently, the IL movement reinterprets the notion of autonomy and enriches the concept of “human rights.”. (shrink)

Independence was a core value of the movement for disability rights. People with disabilities did not have to be dependent, advocates claimed; they were robbed of autonomy by poverty, social prejudice, and architectural barriers. Recently, critics have noted that the emphasis on independence equates personhood with autonomy, reason, and self-awareness, thereby excluding those who are incapable of self-determination. The stigma of dependency is communicated to caregivers whose work is devalued and undercompensated. These values are echoed in the (...) life writing of people with disabilities, which tends to present a singular narrative voice, even when the author requires assistance in the physical or intellectual work of composition. The 1979 Mexican memoir-testimonio Gaby Brimmer, collaboratively authored by the acclaimed journalist Elena Poniatowska, Brimmer, her mother, and her paid caregiver is a notable exception. Consisting of interwoven dialogue among its three informants, Gaby Brimmer enacts dependency at the level of form, while exploring the challenges and opportunities of interdependence in societies that devalue the giving and receiving of care. (shrink)

Based on a qualitative anthropological study of American mothers of infants and young children newly diagnosed with disability, this essay examines how mothers understand their children and define disability in relation to publicly available discourses of disability and identity. In seeking to improve their children’s opportunities in mainstream society, mothers appear to comply with the medical model. But over time and in the process of providing meaning to their experience, mothers retool models, drawing both on the social (...) and minority group models’ rejection of a problem-based definition of disability as inherently caused by impairment and on their own intimate engagement with impairment as an embodied experience. (shrink)

This article examines the rise of a feminist engagement with the disability rights movement. Three realms of social being—individual, society, and the state—interact in the making of the identities of disability. The emergence of Women With Disabilities Australia, suggests the ways women with disabilities come to identify with an autonomous women's group and the ways in which the particular forms of our activisms are produced.

Against the medical and social models of disability are two newer proposals. Elizabeth Barnes’ Minority Body proposes that it is the bodies which are advocated for and included in the disability rights movement which are rightfully called “disabled.” Savulescu and Kahane’s Welfarist approach proposes that disability is intrinsically tied to the effects of bodily states on welfare. They put the need for a consistent and relatively simple normative theory above accounting for standard case judgements about (...) who is and is not disabled or looking at all to membership of the disabled community. I argue that Barnes’ theory offers the best response to issues with the dominant models of disability. Further, I argue that the Welfarist theory operates in a space removed from the wishes and lived experiences of disabled people – separating ‘disability’ from activism entirely – to its detriment. Doing so compromises its explanatory power, over-generalizes the concept and prevents the insertion of meaningful boundaries. Barnes’ ‘solidarity thesis’ soundly conceptualizes disability whilst making room for activist voices. The centering of activist projects makes it stronger. (shrink)

As both the promise and the influence of feminism have grown, women with disabilities have, with increasing intensity, pronounced themselves to be disregarded within the women's movement to an extent little different from how patriarchal society devalues them.

Disability raises profound and fundamental issues: questions about human embodiment and well-being; dignity, respect, justice and equality; personal and social identity. It raises pressing questions for educational, health, reproductive, and technology policy, and confronts the scope and direction of the human and civil rights movements. Yet it is only recently that disability has become the subject of the sustained and rigorous philosophical inquiry that it deserves. The Oxford Handbook of Philosophy and Disability is the first comprehensive (...) volume on the subject. The volume's contents range from debates over the definition of disability to the challenges posed by disability for justice and dignity; from the relevance of disability for respect, other interpersonal attitudes, and intimate relationships to its significance for health policy, biotechnology, and human enhancement; from the ways that disability scholarship can enrich moral and political philosophy, to the importance of physical and intellectual disabilities for the philosophy of mind and action. The contributions reflect the variety of areas of expertise, intellectual orientations, and personal backgrounds of their authors. Some are founding philosophers of disability; others are promising new scholars; still others are leading philosophers from other areas writing on disability for the first time. Many have disabilities themselves. This volume boldly explores neglected issues, offers fresh perspectives on familiar ones, and ultimately expands philosophy's boundaries. More than merely presenting an overview of existing work, this Handbook will chart the growth and direction of a vital and burgeoning field for years to come. (shrink)

IntroductionChildren with severe physical disabilities are denied their fundamental right to move, restricting their development, independence, and participation in life. Brain-computer interfaces (BCIs) could enable children with complex physical needs to access power mobility (PM) devices, which could help them move safely and independently. BCIs have been studied for PM control for adults but remain unexamined in children. In this study, we explored the feasibility of BCI-enabled PM control for children with severe physical disabilities, assessing BCI performance, standard PM skills (...) and tolerability of BCI.Materials and methodsPatient-oriented pilot trial. Eight children with quadriplegic cerebral palsy attended two sessions where they used a simple, commercial-grade BCI system to activate a PM trainer device. Performance was assessed through controlled activation trials (holding the PM device still or activating it upon verbal and visual cueing), and basic PM skills (driving time, number of activations, stopping) were assessed through distance trials. Setup and calibration times, headset tolerability, workload, and patient/caregiver experience were also evaluated.ResultsAll participants completed the study with favorable tolerability and no serious adverse events or technological challenges. Average control accuracy was 78.3 ± 12.1%, participants were more reliably able to activate (95.7 ± 11.3%) the device than hold still (62.1 ± 23.7%). Positive trends were observed between performance and prior BCI experience and age. Participants were able to drive the PM device continuously an average of 1.5 meters for 3.0 s. They were able to stop at a target 53.1 ± 23.3% of the time, with significant variability. Participants tolerated the headset well, experienced mild-to-moderate workload and setup/calibration times were found to be practical. Participants were proud of their performance and both participants and families were eager to participate in future power mobility sessions.DiscussionBCI-enabled PM access appears feasible in disabled children based on evaluations of performance, tolerability, workload, and setup/calibration. Performance was comparable to existing pediatric BCI literature and surpasses established cut-off thresholds (70%) of “effective” BCI use. Participants exhibited PM skills that would categorize them as “emerging operational learners.” Continued exploration of BCI-enabled PM for children with severe physical disabilities is justified. (shrink)

How is Nigeria’s failure to fulfil its obligations as a signatory of the United Nations Convention on the Rights of Persons with Disabilities to be appreciated or even resolved? Answers to this are sought through a seminal criticism of human rights, namely, Simone Weil’s 1942 essay Human Personality. Weil questioned the ability of human rights concepts to cause the powerful to develop the emotional dispositions of empathy for those who suffer. Weil’s insights provide a convincing explanation that (...) the indifference of Nigerian authorities towards the Convention may be accounted for by the weakness of human rights discourse to foster human capacity for empathy and care for those who suffer. Weil’s criticisms will serve as a point of departure for a particular way to circumvent this inadequacy of human rights discourse to achieve disability justice in Nigeria through other means. I argue that Weil, through her concept of attention, grappled with and offers a consciousness of suffering and vulnerability that is not only uncommon to existing juridical human rights approaches, but is achievable through the active participation in the very forms of suffering and vulnerability in which amelioration is sought. To provide empirical content to this argument, I turn to a short-lived initiative of the Nigerian disability movement, which if ethico-politically refined and widely applied, can supply an action-theoretical grounding for and be combined with Weil’s work to elevate agitations for disability justice above human rights to the realm of human obligations. (shrink)

Through the ratification and implementation of the Convention on the Rights of Persons with Disabilities, Japan’s policy towards people with disabilities and their rights has moved away from its traditional focus on economic and socio-cultural rights (known as “social rights”) to encompass civil and political rights (or “liberty rights”). Several factors have contributed to this development: firstly, the efforts of the Japanese disability rights movement, which benefited in 2009 from a favorable (...) change of government when the coalition comprising the Liberal Democratic Party and the New Kōmeitō was defeated in the elections by the Democratic Party of Japan; and secondly, the judicial developments surrounding the Law on Election to Public Office, as well as the support given to the victims of the former Eugenic Protection Law. As the first findings of the 2022 survey of Japan by the Committee on the Rights of Persons with Disabilities suggest, a better balance in the approach to social and liberty rights will be essential if Japan is to meet the main challenges posed by its disability policy. (shrink)

This article aims to present the problem of the impact of artificial intelligence on respect for human dignity in the sphere of care for people who, for various reasons, are described as particularly vulnerable, especially seniors and people with various disabilities. In recent years, various initiatives and works have been undertaken on the European scene to define the directions in which the development and use of artificial intelligence should go. According to the human-centric approach, artificial intelligence should be developed, used (...) and monitored with people in mind, their needs and rights. It is artificial intelligence that should adapt to the rules set by people, not the other way around. The source of all human rights and freedoms is respect for human dignity. This is evidenced by numerous European, international, national regulations and documents. Respecting this value is also one of the works on the AI development. One of the areas of our life into which AI enters more and more boldly and which in the near future, due to demographic reasons and aging population, may be almost dominated by modern technologies, is the medical and care system. The usefulness of industrial co-robots made us think about the possibility of using similar devices in the non-industrial sphere, including in the sphere of care, nursing and therapy. Actually, despite the impressive development of technology and AI, intelligent robots/devices used for care, nursing or therapy (so-called care/nursing or therapy robots) perform rather simple activities. They provide information, navigate, bring something and give it (e.g. medicines, food), help to get up. They are an important support for medical staff in this respect. Performing tasks that are more complex in terms of technology and movement, such as feeding, washing, intimate hygiene, dressing or undressing, is still beyond the reach of the currently used robots. The question we must ask ourselves is whether, in the future, care robots will be able to perform such tasks, and should they do so? Will this lead to the replacement of human medical personnel in the performance of the above-mentioned activities with such robots. Would anyone want to be "looked after" by a soulless machine? Should potential wards/patients, in other words all of us in fact, have the right to object to being taken into the care of an intelligent robot? There is no doubt that intelligent robots have great potential, especially when it comes to ensuring or maintaining the independence or mobility of people with various health limitations. However, we must not forget about the risks and dangers they may generate. Even a simple robot generates serious legal and ethical problems. Who should be liable for damage caused in connection with improper care performed with the participation of a robot? Robots based on AI systems are able to collect a significant amount of sensitive data, for example through the face and speech recognition function. There is considerable scope for abuse in this area, not only in terms of personal data protection but also in terms of informational self-determination, privacy and dignity. Bearing in mind the above risks, the creation of a new right to object to being looked after by a robot should be considered. (shrink)

Brain–machine interfaces are systems that allow the control of a device such as a robot arm through a person’s brain activity; such devices can be used by disabled persons to enhance their life and improve their independence. This paper is an extended version of a work that aims at discriminating between left and right imagined hand movements using a support vector machine classifier to control a robot arm in order to help a person to find an object in the environment. (...) The main focus here is to search for the best features that describe efficiently the electroencephalogram data during such imagined gestures by comparing two feature extraction methods, namely the continuous wavelet transform and the empirical modal decomposition, combined with the principal component analysis that were fed through a linear and radial basis function kernel SVM classifier. The experimental results showed high performance achieving an average accuracy across all the subjects of 92.75% with an RBF kernel SVM classifier using CWT and PCA compared to 80.25% accuracy obtained with EMD and PCA. The proposed system has been implemented and tested using data collected from five male subjects and it enabled the control of the robot arm in the right and the left direction. (shrink)

Reflecting current debates on ‘organizational virtues’ as going beyond the capitalocentrist bias of contemporary economies and to see diversity as ‘ethical responsibility,’ this article explores ‘ethical organizing’ at the intersection of alternative organizations and diversity. Our interest in a diversity-oriented analysis of alternative organizations stems from the assumption that those which question taken-for-granted notions of existing economies and follow alternative values of autonomy, solidarity, and responsibility might also be likely to challenge existing diversity relations and, thus, potentially open up new (...) avenues for ethical organizing. Discussing our findings in terms of Lewis and Simpson’s (in)visibility vortex, our study shows that even though organizations position themselves discursively as ‘alternative,’ this positioning is not related to diversity issues. We conclude that a shift is needed to fully constitute ethical organizing, namely the establishment of a strong connection between alternative organizations’ virtues with, e.g., the feminist, anti-racist, queer, and disability rights movements. (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)

Transhumanists and other proponents of enhancement have been criticized for their attitude to disability. Melinda Hall argues that transhumanists denigrate disabled people by devaluing interdependence and vulnerability, and implying that disabled people are dangerous. It might also be thought that further development of enhancement technologies would have bad consequences within current, ableist and otherwise oppressive social contexts. This paper responds to these objections, arguing that enhancement needn't be in conflict with disability justice. While enhancements can be used and (...) promoted in ways that reinforce ableism and other oppression, ways of mitigating these problems might be found by drawing on ideas from the disability rights movement, and social justice movements more broadly. The development of more accessible environments, and a general openness to surprises about which traits promote well-being, can help to create conditions under which people have genuine choice over which enhancement technologies, if any, to use. (shrink)

Feminist research on community care and ‘informal carers’ identified this as a women's issue but failed to address the interests and experiences of older and disabled women – those who received ‘care’ One consequence is that such feminist research has implicitly, and sometimes explicitly, undermined disabled women's rights to a home, children and personal relationships. Using qualitative research, the article highlights the actual experience of women whose physical impairment means that they need help with daily living activities, looking at (...) the different circumstances in which such help is received. The disability movement's concept of ‘independent living’ raises particular issues for disabled women. ‘Independent living’ is about having choice and control over the assistance needed, rather than necessarily doing everything for yourself. However, gender inequalities may also inhibit the choice and control that women have in their lives. Assistance can be given within a personal relationship as an expression of love, but disabled women may also experience abusive, restrictive or exploitative relationships. Public services do not generally provide assistance in a way which enables a woman to have choice and control in her life, or even to carry out child-caring or homemaking tasks. The research on the various ways of receiving personal assistance found that those women who were able to purchase their own help were most likely to be living independently, in the sense of exerting choice and control in their lives. Feminist research can help to create a space for disabled women's absent voices, and add to the pressure for change in the way that personal assistance needs are met. This is a human and civil rights issue which has a key impact on the control that disabled women have over their lives. (shrink)

The advent of prenatal screening technologies has neatly paralleled the evolution of disability rightsDisability rights. During the 1970s and 1980s, the disability movement in many countries campaigned for barrier removal, better provision and recognition.

As scholars envision a new regulatory or statutory neurorights schema it is important to imagine unintended consequences if reforms are implemented before their implications are fully understood. This paper critically evaluates provisions proposed for a new Chilean Constitution and evaluates this movement against efforts to improve the diagnosis of, and treatment for, individuals with disorders of consciousness within the broader context of disability law, international human rights, and a capabilities approach to health justice as advanced by Amartya (...) Sen and Martha Nussbaum. Framed in this way, any neurorights regime would need to satisfy several criteria. First it would be obliged to balance both positive and negative rights in the furtherance of human capabilities. Second, it would need to be future oriented and informed about the science it sought to regulate and not fall prey to science fiction fantasies that remain ungrounded in reality. Third, it would need to be specific and avoid generalizations that would lead to conceptual confusion and litigation that could delay scientific progress. Finally, it would need to harmonize novel neurorights with long-established norms in international disability and human rights law. A failure to meet these criteria will destine any novel neurorights regime to the periphery. At this juncture Chile’s nascent constitutional venture into neurorights fails to satisfy these criteria. While there yet may be a role for a more capacious and bivalent articulation of neurorights that account for capabilities and precedent, the current Chilean neurorights reforms are vague and premature. As such they should undergo additional scholarly scrutiny and should not be adopted by other jurisdictions. (shrink)

This paper provides a commentary on “Vascular amputees: A study in disappointment” and its significance in the development of the disability rights movement, as well as the movements for values-based medicine and person-centred health and social care.

Professor Elizabeth Barnes has produced a tightly and carefully reasoned philosophical examination of the significance of disability. It provides a clear defense of certain core principles of the disability rights movement in contrast to the many professional philosophers who consider that movement to be ill-conceived. An example of this tradition can be seen in the volume From Choice to Chance: Genetics and Justice, coauthored by four of the most prominent bioethicists of the turn of the (...) century. I confess to the prejudice implied by my label of 'mainstream... (shrink)

Reflecting current debates on ‘organizational virtues’ as going beyond the capitalocentrist bias of contemporary economies and to see diversity as ‘ethical responsibility,’ this article explores ‘ethical organizing’ at the intersection of alternative organizations and diversity. Our interest in a diversity-oriented analysis of alternative organizations stems from the assumption that those which question taken-for-granted notions of existing economies and follow alternative values of autonomy, solidarity, and responsibility might also be likely to challenge existing diversity relations and, thus, potentially open up new (...) avenues for ethical organizing. Discussing our findings in terms of Lewis and Simpson’s (in)visibility vortex, our study shows that even though organizations position themselves discursively as ‘alternative,’ this positioning is not related to diversity issues. We conclude that a shift is needed to fully constitute ethical organizing, namely the establishment of a strong connection between alternative organizations’ virtues with, e.g., the feminist, anti-racist, queer, and disability rights movements. (shrink)

En las últimas décadas el movimiento social a favor de los discapacitados o Disability Rights Movement (DRM) ha irrumpido en la arena pública. Como los feminismos de segunda y tercera ola y el movimiento GLBT, el DRM reivindica que el colectivo de personas con discapacidad, al igual que las mujeres y las minorías sexuales tienen una historia y una serie de valores e ideales de vida buena que permiten hablar, según los casos, de Cultura de la discapacidad (...) (Disability Culture) o de Identidad discapacitada (Disability Identity). El texto analiza las posibilidades y desafíos de esta apropiación del modelo etnocultural y del reconstructivismo, y más concretamente de las dificultades de la aplicación del paradigma del multiculturalismo central al tema de la discapacidad. (shrink)

Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation (...) on par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals. (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.

Emerging New Voices in Critical Animal Studies: Vegan Studies for Total Liberation, co-edited by Nathan Poirier, Anthony J. Nocella II, and Annie Bernatchez of the Institute for Critical Animal Studies, is a brilliant radical engaging intersectional book promoting total liberation from new fresh critical animal studies voices throughout the world. This captivating critical animal studies collection, influenced by historical and ongoing radical movements such as green anarchism, Black liberation, prison abolition, feminism, Queer liberation, disability rights, and decolonization, is (...) one of the most powerful texts in the last decade within the animal liberation movement. We must begin to listen to new and young scholars for social justice to evolve in order to end speciesism and all forms of oppression. Read, share, reflect and act on this interdisciplinary collection of scholar-activists from sociology, anthropology, criminology, economics, philosophy, cultural studies, eco-theology, environmental studies, and education that will transform the global movement for radical social justice and propel total liberation forward. (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,3 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.4 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 to provideing a comprehensive understanding of disability rights in the region and identifying key regulatory problems and ways forward. (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.