A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Intellectual Disability: Ethics, Dehumanization, and a New Moral Community presents an interdisciplinary exploration of the roots and evolution of the dehumanization of people with intellectual disabilities. Examines the roots of disability ethics from a psychological, philosophical, and educational perspective Presents a coherent, sustained moral perspective in examining the historical dehumanization of people with diminished cognitive abilities Includes a series of narratives and case descriptions to illustrate arguments Reveals the importance of an interdisciplinary understanding of the social (...) construction of intellectual disability. (shrink)

Nicholas Wolterstorff has presented an account of justice that has important implications for disability. He does not ground rights in intellectual capacities. Instead, rights are justly owed by virtue of the inherent worth bestowed by God to humanity, thereby protecting those with severe intellectual disabilities. Wolterstorff’s aesthetics, I claim, offer a vision for how these rights are rendered. By describing art as a social practice wherein justice can be rendered, and by describing justice as essential to Christian liturgy, Wolterstorff (...) allows liturgy to be a site where justice can and ought to be rendered to the disabled. Liturgy then becomes a social practice where one can learn to see those with disabilities differently, not as inherently ugly but as beloved by God and owed certain goods by right. (shrink)

Nicholas Wolterstorff has presented an account of justice that has important implications for disability. He does not ground rights in intellectual capacities. Instead, rights are justly owed by virtue of the inherent worth bestowed by God to humanity, thereby protecting those with severe intellectual disabilities. Wolterstorff’s aesthetics, I claim, offer a vision for how these rights are rendered. By describing art as a social practice wherein justice can be rendered, and by describing justice as essential to Christian liturgy, Wolterstorff (...) allows liturgy to be a site where justice can and ought to be rendered to the disabled. Liturgy then becomes a social practice where one can learn to see those with disabilities differently, not as inherently ugly but as beloved by God and owed certain goods by right. (shrink)

Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also a number of ethical issues. The aim of this (...) paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)

Meier et al. describe a pilot study that developed METHAD, an AI-based Medical Ethics Advisor tool that draws on the principlism approach and was tested using text-book cases and clinical et...

A brain-computer interface technology that can decode the neural signals associated with attempted but unarticulated speech could offer a future efficient means of communication for people with severe motor impairments. Recent demonstrations have validated this approach. Here we assume that it will be possible in future to decode imagined (i.e., attempted but unarticulated) speech in people with severe motor impairments, and we consider the characteristics that could maximize the social utility of a BCI for communication. As a social interaction, communication (...) involves the needs and goals of both speaker and listener, particularly in contexts that have significant potential consequences. We explore three high-consequence legal situations in which neurally-decoded speech could have implications:Testimony, where decoded speech is used as evidence;Consent and Capacity, where it may be used as a means of agency and participation such as consent to medical treatment; andHarm, where such communications may be networked or may cause harm to others. We then illustrate how design choices might impact the social and legal acceptability of these technologies. (shrink)

Extant business research has not addressed the ethical treatment of individuals with psychiatric disabilities. This article will describe previous research on individuals with psychiatric disabilities drawn from rehabilitation, psychological, managerial, legal, as well as related business ethics writings before presenting a framework that illustrates the dynamics of (un)ethical behavior in relation to the employment of such individuals. Individuals with psychiatric disabilities often evoke negative reactions from those in their environment. Lastly, we provide recommendations for how employees and organizations can (...) become more proactive in providing individuals with such disabilities equal employment opportunities for both access and accommodation in the workplace. (shrink)

The 2008 UN Convention on the Rights of Persons with Disabilities (CRPD) provides a landmark articulation of the universality of human rights. It affirms in strong terms that all human beings have a claim to full inclusion and equal participation in society, something denied to many because of disability. The CRPD is an ambitious document with far-reaching and fundamental implications. This interdisciplinary collection of essays takes up pressing philosophical, legal, and practical issues raised by the CRPD and the ongoing (...) process of its implementation. Combining clear legal and philosophical overviews with ground-breaking conceptual analyses, the collection aims to advance the academic debate about human rights and disability and to serve as a useful resource for policymakers, ethicists, disability activists, jurists, and all those interested in the human rights of persons with disabilities. With contributions by Jackie Leach Scully, Marcus Düwell, Jenny Goldschmidt, Sigrid Graumann, Caroline Harnacke, Jan Vorstenbosch, Esther van Weele, Joel Anderson, Jos Philips. (shrink)

According to the most important theories of justice, personal dignity is closely related to independence, and the care that people with disabilities receive is seen as a way for them to achieve the greatest possible autonomy. However, human beings are naturally subject to periods of dependency, and people without disabilities are only “temporarily abled.” Instead of seeing assistance as a limitation, we consider it to be a resource at the basis of a vision of society that is able to account (...) for inevitable dependency relationships between “unequals” ensuring a fulfilling life both for the carer and the cared for.**. (shrink)

Many studies have emphasized the importance of medical, insurance, and workplace systems treating individuals fairly in work disability prevention and return-to-work. However, ethical theories and perspectives from these different systems are rarely discussed in relation to each other, even though in practice these systems constantly interact. This paper explores ethical theories and perspectives that may apply to the WDP–RTW field, and discusses these in relation to perspectives attributed to dominant stakeholders in this field, and to potential differences in different (...) jurisdictional contexts. Literature was sought primarily in biomedical ethics, business ethics, and public administration ethics. In biomedical ethics, four ethical principles are dominant: autonomy, beneficence, nonmalevolence, and justice. Business ethics involve theories on Corporate Social Responsibility, social contracts, and organizational justice. Public administration ethics focus on constitutional theory, citizenship, social equity, virtue, and public interest. Several concepts were identified as relevant for ethical analyses in the WDP–RTW field, including justice; individual autonomy; nonmalevolence; economic and social responsibility; and social contracts. These concepts provide a vocabulary that may be used to analyze stakeholders’ actions and interactions in RTW processes. It was also noted how the power balance between stakeholders will influence which ethical perspectives will influence RTW. Jurisdictional differences that influence RTW processes with regard to stakeholder responsibilities were identified, as well as varying beliefs as to who is the client in different compensation systems. A social contractual approach may inform an analysis of cultural and legal differences. (shrink)

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

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)

This article questions the reason behind ethics in caregiving services for people with serious intellectual disabilities, the reasons changes have taken place in medicine, in the kinds of illnesses, social changes and changes in how hospitality is envisioned, which lead us to reconsider the usual way of doing things, the traditional morals on which their treatment has been based. However, the traditional ways of dealing with those disabled individuals have also become obsolete and are ethically reproachable: based on charity (...) and beneficence, goodwill and paternalism, if not on ignorance and vulnerability. (shrink)

The study examines the employment experience of workers with intellectual disability in the hotel sector in Australia. Through a qualitative case study, we interviewed managers and WWID, and held focus groups with supervisors and colleagues at three hotels. We have used the theoretical framework of corporate social responsibility to investigate HR practices that create an ethical climate which promote authentic work experiences for WWID. The study found that participative work practices provide evidence of how WWID fit in at the (...) workplace. When workers are confronted with work-related anxieties, the pragmatic nature of existential authenticity becomes a reality. Our findings reveal that managing workers ethically can lead to more authentic work experiences. In turn, this may promote social inclusion of WWID and improve their reported well-being. (shrink)

In recent years there has been increased focus on supporting the safety and wellbeing of children and young people with disability. This paper reports on a study that asked children and young people with disability and adults who work with them about practices that support their wellbeing and safety, including barriers and enablers to ethical practice. We used the theory of practice architectures to unpack the practices. Findings point to a range of practices that both young people and (...) adults regarded as important in creating the cultural conditions for young people to feel happy, safe and well, albeit placing different emphases on particular practices. Several tensions within and between these practices and the evolving requirements of disability and safeguarding policy environments were also apparent. While often not well articulated, the inherent tensions have implications when considering what children and young people need, particularly those with higher support needs. Findings suggest closer attention needs to be given to the intersection between individual and systemic factors in shaping ethical practice aimed at supporting the wellbeing and safety of children and young people with disability. (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)

In the polarized debates about abortion and voluntary euthanasia, disability advocates, who normally align with left-wing social forces, have tended to side with conservative and religious voices in expressing concerns about the impact of technological and sociopolitical developments on disabled futures. This paper draws on the social model of disability and the virtue ethics tradition to explain the alignment between the religious and disability perspectives, and the theory of transformative choice to highlight the limits and biases (...) of the pro-choice logic. Yet, it also recognizes the inherent contradiction of disabled advocates taking a paternalistic position against the personal agency of women and people facing terminal illnesses. A disability perspective serves the discussion of abortion and euthanasia as an encouragement to work together for the building of a society that enables people with diverse disabilities to exist and flourish, and helps pregnant women, people facing disabling and terminal illnesses, and politicians and social influencers to make informed choices. (shrink)

Cognitively disabled individuals have been marginalized by our larger culture; they’ve also been marginalized in philosophical discussions. This paper seeks to begin correcting this situation by examining how assumptions which shape our social interactions and expectations disadvantage individuals with a range of cognitive disabilities. After considering Rubella syndrome and autism in detail, I argue that we have a moral obligation to change how we approach social interactions with cognitively disabled individuals.

The effective provision of psychotherapy services to individuals with intellectual disability requires consideration of ethical issues related to clinical competence, access to services, obligations to multiple parties, guardianship, and appropriate assessment practices. This article provides an overview of major ethical considerations with guidance for clarifying and resolving common ethical concerns. Psychologists are encouraged to expand access to psychotherapy services for this population while maintaining awareness of potential modifications, training needs, and boundaries of professional competence. The authors provide recommendations and (...) resources for effective and ethical treatment of psychotherapy clients with intellectual disabilities. (shrink)

Public health emergencies such as pandemics can put health systems in a position where they need to ration medical equipment and interventions because the resources available are not sufficient to meet demand. In public health management, the fair allocation of resources is a permanent and cross-sector issue since resources, and especially economic resources, are not infinite. During the COVID-19 pandemic resources need to be allocated under conditions of extreme urgency and uncertainty. One very problematic aspect has concerned intensive care medicine (...) and age discrimination has been among the most hotly discussed issues, as age has been touted as a probable criterion for selection. In this paper we analyse some documents originating from scientific societies and medical associations, mainly related to EU sphere and available in English, French, Spanish and Italian, concerning the criteria for admission to the intensive care units. We highlights how, in most of these documents, it is explicitly stated that “age itself” is not a criterion for patient selection. Our conclusion is that these criteria should be defined in advance of a crisis situation and be grounded in clinical indicators. Establishing “cut-off” policies with regard to criteria such as age or chronic disability is definitely an unjustifiable form of discrimination even in the context of a public health emergency. (shrink)

: This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEAF children. We explore whether (...) that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEAF are explored, as are ethical quandaries in parental surrogacy for DEAF children, and their parallels in transracial adoption. (shrink)

(2000). Disability, Geography and Ethics. Philosophy & Geography: Vol. 3, No. 1, pp. 98-102.

Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This ethical framework is derived from the (...) basic ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India. (shrink)

(2000). Disability, Geography and Ethics. Philosophy & Geography: Vol. 3, No. 1, pp. 70-80.

This chapter compares three different general accounts of personhood (Byzantine, Boethian, and Modern) and argues that if personhood is the basis on which one has equal moral status in the moral community and the disability-positive position is correct, then the Byzantine and Boethian accounts are preferable over the Modern accounts that are surveyed here. It further argues that the Byzantine account is even friendlier to a disability-positive position compared to the Boethian account.

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

(2000). Disability, Geography and Ethics. Philosophy & Geography: Vol. 3, No. 1, pp. 65-70.

(2000). Disability, Geography and Ethics. Philosophy & Geography: Vol. 3, No. 1, pp. 87-90.

The aim of this study was to investigate the experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation. Qualitative interviews were performed with 26 persons and thereafter subjected to qualitative latent content analysis. The experiences of personal assistance were very much in accordance with the said principles, the most important factor (...) being that one is met with understanding. The participants described situations in which their integrity was violated in that they were not treated as competent adults. This indicates the importance of future efforts in nursing to support personal assistants with ethical knowledge and supervision so that they can empower people with disabilities and thereby enable them to maintain their self-esteem and dignity. (shrink)

This monograph consists of five parts: (1) introductory material including a conference overview; (2) papers presented at an international symposium on the topic of ethical issues in disability and rehabilitation as a section of the Annual Conference of the Society for Disability Studies; (3) responses to the symposium, prepared by four of the participants; (4) selected additional papers which offer views from perspectives or cultures not represented at the Denver conference; and (5) an annotated international bibliography. Representatives from (...) 10 countries discussed ethical issues and decision making in disability and rehabilitation. Conference papers include: "Genetic Engineering--The New Eugenics? Evolving Medical Attitudes towards the Quality of Life" (Hugh Gallagher);"Description of the Decision-Making Project" (Daryl Evans); "Treatment and Nontreatment Decisions with Respect to Extremely Premature, Very Low Birthweight Infants (500-750g)" (Ernle Young); "Allocation of Resources and Distributive Justice" (John Mather); "Quality Assurance as an Aid to Ethical Decision Making in Disability Management: Lessons from Recent Ethical Issues Involving Disadvantaged Groups in New Zealand" (Peter Gow); "Disability and Ethical Issues: A Point of View from the Netherlands" (Yolan Koster-Dreese); "Who Shall Live or How Shall They Live? Consumer and Professional Perspectives on Treatment/Non-Treatment Decisions" (Joseph Kaufert and Patricia Kaufert); and "Debates across Social Movements on Reproductive Technologies, Genetic Engineering, and Eugenics" (Theresia Degener). Conference commentaries include: "The Meeting of Disability and Bioethics: A Beginning Rapprochement" (Adrienne Asch); "A Plea for More Dialogue: Commentary on Ethics Conference" (Robert Slater); "Healing Our Wounds" (Martha Lentz Walker); "Theories and Values: Ethics and Contrasting Perspectives on Disability" (Harlan Hahn); and "Current Example of Ethical Dilemma" (Susan Lacetti). Selected additional papers include: "High-tech Medicine Is Basic Care" (Frederick Abrams); "Prevention of Disabilities as a Medical Question" (G. Schioler); "The Ethics of Disability Prevention: A Parent's Point of View" (Mrs. J. Baker); "A Reference Matrix for Issues of Life and Personhood" (Mike Miles); "Nazi Scientists and Ethics of Today" (Isabel Wilkerson); "Ethical and Policy Issues in Rehabilitation Medicine (Hastings Center Report)" (Arthur Caplan et al.); and "Differing Approaches to Prevention of Disability and Treatment of Impaired Infants Creates Controversies Worldwide" (Barbara Duncan). (JDD). (shrink)

Disability dance lays claim to the provocative possibilities of the disabled body, raising profound questions about the politics of art, affect, and embodiment. For scholars of religion, disability dance is a powerful—and as yet unrecognized—site for probing the sacrality and ethics enacted in disability culture. This article brings the biblical tale of Jacob and the angel into conversation with a contemporary performance, “The Way You Look (at me) Tonight,” an intimate duet between choreographer and performer Jess (...) Curtis and Clare Cunningham, an internationally acclaimed dancer who explores the artistry of lived disability experience. Using dance as a hermeneutic invitation to draw out ethical insights into risk, consent, and intimacy, I offer a disability-sensitive reading of Genesis 32—reading the angel as a body whose presence attests to the brilliant shock of disability difference and probing the psychic and somatic transformation that unfolds when Jacob comes into kinesthetic contact with disability and the sacred. (shrink)

(2000). Disability, Geography and Ethics. Philosophy & Geography: Vol. 3, No. 1, pp. 80-87.

Drawing on the author’s experience carrying out qualitative research in the field of occupational therapy with people with intellectual disabilities, this article explores ethical issues inherent in ethnographic and case study research, where study designs can evolve over time. Such qualitative methodologies can enable deep understanding of research topics, but detailed description of methods and of the range of potential experiences participants may have is necessary to ensure that they are fully informed and ethics committees satisfied. Thorough consideration is (...) required of ethical issues related to topic relevance and design, recruitment, collection of data and portrayal of participants in the eventual case report. The article illustrates a way in which research of this type can be explained and justified, including how recruitment can be achieved of participants likely to lack capacity to consent to participation themselves. (shrink)

While disability theory and feminist theory share a great deal in their methodology and could potentially share quite a bit in their political commitments, there is a tension or conflict between these two approaches as they evaluate prenatal diagnosis. For the feminist disability advocate, this can be thought of as a type of ideological double bind. This paper will dissolve this tension by way of John Dewey’s version of American pragmatism. First, I will map out the landscape of (...) the prenatal diagnosis double bind by describing the skeptical disability arguments and supportive feminist arguments. Then, I will describe how Dewian pragmatism can dissolve the tension between disability advocacy and feminism by giving lived experience priority over absolutist ethical theories and recommending that we deliberately evolve our social institutions to work better in our social environment. Finally, I will suggest some reforms of the social institutions surrounding prenatal diagnosis, taking into account the interests of people with disabilities, caregivers who tend to be female, and pregnant women. (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)

This paper discusses ethical dilemmas related to social work practice with young adults with autism. It does so via the use of a case study taken from real life practice. The different viewpoints and ethical frameworks of the young person, the young person's parents and the Local Authority (or the Local Authority social worker) are considered and discussed. The competing rights of the 2006 United Nations Convention on the Rights of Persons with Disabilities (and the Optional Protocol) are also considered.

Stigma against mental disability within the medical field continues to impose significant barriers on physicians and trainees. Here, we examine several implications of this stigma and propose steps toward greater inclusion of persons with mental disabilities in the physician workforce.