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)

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)

Resumen: El presente trabajo se centra en el análisis del Anteproyecto de reforma de la legislación civil española en materia de capacidad jurídica de las personas con discapacidad publicado recientemente por el Gobierno español. Su objetivo consiste en determinar la adecuación de las principales modificaciones planteadas en este anteproyecto a las exigencias del artículo 12 de la Convención Internacional sobre los Derechos de las Personas con Discapacidad tal y como han sido interpretadas por su Comité en la Observación General Nº1 (...) Abstract: This paper focuses on the analysis of the prelimimary Draf Law of reform of the Spanish civil legislation on legal capacity of persons with disabilities, published by the Spanish Government on September 26th 2018. Its aim is to determine the conformity of the main modifications proposed in this preliminary Draft to the requirements of article 12 of the Conventionon the Rights of Persons with Disabilitiesas interpreted by its Committee in the General Comment Nº 1. (shrink)

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance (...) Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability. (shrink)

The distinction between students diagnosed with a learning disability and those considered merely slow learners is based on conceptually flawed assumptions that: 1) LD represents a brain dysfunction while SL does not; 2) LD is a well-defined disorder; 3) valid measurement instruments distinguish LD and SL; 4) special education for students with LD is fundamentally different from that for SL students. These erroneous beliefs are maintained because governmental legislation transformed a diagnosis of LD into an admission ticket to a (...) variety of government entitlements thereby subjecting it to political, legal, social and ideological forces. (shrink)

Sex selection and disability avoidance receive opposed treatment in bioethics literature, legislative practice and public opinion. However, some theorists question this state of affairs by drawing analogies between the harmful consequences of these practices. This paper shares their disapproval of gender selection and disability avoidance, but bases its resistance to these practices on an examination of the concepts of gender and disability. Here it identifies conceptual confusions as another cause of approval of sex selection and disability (...) avoidance. Further, in clarifying the nature of the concepts at issue, and their relationship with the subjects that they apply to, this discussion highlights the existence of relevant analogies between the concepts of gender and disability. Here the social construction and universality of gender and disability allow their differential treatment to be resisted at the conceptual level, creating a strong foundation for more consequentialist arguments against sex selection and disability avoidance. (shrink)

A growing body of literature in the field of embodied situated cognition is drawing attention to the hostile ways in which our environments can be constructed, with detrimental effects on people’s ability to flourish as environmentally situated beings. This paper contributes to this body of research, focusing on a specific area of concern. Specifically, I argue that a very particular problematic quasi-Cartesian picture of the human body, the human mind, what it means for these to function well, and the role (...) of technology in promoting such functioning, animate our Western sociotechnical imagination. This picture, I show, shapes the sociotechnical niches we inhabit in an _ableist_ manner, perniciously legislating which body-minds have access to a rich world of affordances and are seen as agential and valuable. Because the ableist quasi-Cartesian commitments animating our Western sociotechnical imagination are problematic and pervasive, I argue that exposing and reimagining these commitments should be a prime focal point of those working at the intersection of science, technology, and human values. I present insights from enactive 4E cognition and critical disability studies as fruitful resources for such much-needed reimagining. I also make the case, more provocatively but also more tentatively, that the ableist view of bodily and minded well- functioning animating our Cartesian Western sociotechnical imagination is not only damaging to embodied minds who deviate from the presumed norm, creating inaccessible worlds for some of us; it is in fact a threat to human and planetary flourishing at large. (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)

Breaking with discriminatory views and segregated education for children with disabilities, regions often referred to as Confucian Heritage Regions (CHRs) have been moving towards inclusive education. Although some of these regions have been at the centre of attention in global education recently, there is a lack of research and information about how they ‘do’ inclusive education. Considering that reinforcing legislative foundations is of foremost importance for its fulfillment, this study examines legislation on the education of children with disabilities in four (...) neighbouring CHRs: the Chinese Mainland, Japan, South Korea and China's Taiwan. The core principles that frame such legislation were analyzed and cross-compared. The findings show that despite the common Confucian heritage that is attributed to them systematically in studies of inclusive education – which is often said to influence the way disability is perceived and dealt with – the four Regions treat inclusion differently in terms of legislation. While some CHRs are clearly influenced by e.g. the USA, others are trying to design a specific perspective on inclusive education. The authors argue that the complex example of these CHRs can serve as an important template for studies on both inclusive and comparative education. The article also calls for the careful treatment of inclusive education beyond an essentialist and somewhat simplistic perspective that could reduce certain regions to a monolith. (shrink)

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

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

The symposium in this issue, on equality and disability, helps to clarify some areas of continuing disagreement in disability studies, but also uncovers substantial consensus. All of the contributors appear to endorse John Harris's statement that “No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth, or value”.1 It seems safe to assume, moreover, that few if any readers of the Journal of Medical Ethics are likely to disagree with this, or indeed (...) to challenge Kate Diesfeld's initial assumption that “Generally speaking, it is both immoral and unlawful to discriminate between people on the ground of disability”.2Some, of course, might challenge Diesfeld's choice of the word “between” rather than “against”. What is generally agreed to be both immoral and unlawful is discrimination in the modern sense of treating people unjustly on the basis of distinctions that are not morally relevant to the matter in hand. It is neither immoral nor illegal, for example, for a transport employee to discriminate between members of the travelling public in order to offer some but not others the use of a wheelchair or a wheelchair ramp. Nor is it immoral or illegal for society to discriminate between its members through legislation which offers, to some but not others, special forms of aid or protection, based on the recognition of their respective disabilities.Legislation designed to protect people …. (shrink)

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

This collection pays tribute to Jerome E. Bickenbach’s work that spans from philosophical and sociological issues to international legislation designed to support the rights of people with disabilities. Eight essays critically engage with Bickenbach’s work to further advance the discussions he has initiated throughout his career.

pt. 1. Background you need. -- What is brain-compatible teaching -- The old and new of it -- When brain research is applied to the classroom everything will change -- Change can be easy -- We're not in Kansas anymore -- Where's the proof -- Tools for exploring the brain -- Ten reasons to care about brain research -- The evolution of brain models -- Be a brain-smart consumer: recognizing good research -- Action or theory: who wants to read all (...) that research -- Excellent sources of research -- Fun factoids on the brain -- What's in the human brain -- Brain teaser -- The brain divided -- The brain connected -- Brain geography -- Brain "cell" ebration: far-out facts about brain cells -- Learning happens but how -- Are today's kids different -- Boy's and girl's brain differences -- Learning disabilities; different brains -- The cranial soup bowl: understanding the chemicals in our brains -- pt. 2. The foundation for teaching is principles, not strategies. What are the principles -- Principle 1: the principle of change: brain is dynamic, not fixed -- Principle 2: the principle of variety: all brains are unique -- Principle 3: the principle of developmental sensitivity -- Principle 4: the principle of interaction: we have a social brain -- Principle 5: the principle of connectivity: the brain is an integrated system of systems -- Principle 6: the principle of memory malleability -- Principle 7: the principle of resource consumption -- necessity for processing -- pt. 3. So what; now what. Asking big questions: what's in a brain-compatible curriculum -- Brain-compatible test-taking success strategies -- Systemic change: the next level -- Big picture analysis: transformation happens -- Action research makes a difference -- The learning community -- What's next. (shrink)

Serious concerns about pervasive, persistent, and unjustified social inequalities have prompted a small—but growing—number of academic commentators to raise some hard and troubling questions for those who would like to legalize physician-assisted suicide. In various ways, these commentators have asked: In light of existing social inequalities—inequalities that operate, for example, along sometimes intersecting lines of race, class, age, sex, and disability—how persuasive are autonomy-based arguments in favor of legalization of assisted suicide when those arguments depend on a conception of (...) autonomy that either presupposes social equality or does not expressly account for its absence? How compelling are arguments that we ought to legalize assisted suicide out of feelings of mercy for the sick and dying, when such affective expressions may actually be the socially acceptable manifestation of private ambivalence that includes merciless discrimination? (shrink)

In this paper, I examine how an organization narratively constructs its prototypical disabled employee. Data comprise public narratives of the Government of India, the country’s largest employer of disabled persons. Narratives during 2008–2016 were considered as this timespan witnessed the design of inclusive legislation that emphasized defining disabled persons and their entitlements. Findings indicate that the label of “disadvantage” was consistently used to portray the target employee. Alongside other narrative material suggesting, for example that the target employee was someone who (...) required employment assistance, this label was supplied to external audiences to convert them into potential partners. This supply of narrative material further reinforced the portrayal of the target employee. Consistent use of this expansive label subsumed changing definitions of who is a disabled person, allowed for aggregations with diverse disadvantaged collectives, and accommodated changes in employment entitlements and ecosystem partners, thereby allowing the reading of change in stable narratives. The contributions of this paper lie in highlighting how the consistent use of an expansive label can cast narrative stability and change as complementary, and in suggesting that narrating a prototypical employee entails shaping the setting outside the employing organization toward employee categorization. (shrink)

Abortion prohibitions in some states include carve-outs based on the medical condition of either the mother or the fetus. These carve-outs, however, may be couched in limiting language structured by legislators rather than in language understandable in the context of medical care. In circumstances where legislative bodies fail to adequately incorporate medical professionals in the drafting of medical laws, the resulting vagueness or ambiguity may lead to a lack of utility or viability. This paper considers the consequences of such legislative (...) misreading of medicine. It does so with a particular example, Utah’s abortion trigger law, 2020 Senate Bill 174 (S.B. 174). S.B. 174 was enacted in 2020 (currently enjoined pending the outcome of _Planned Parenthood Association of Utah v. State of Utah_) and includes an exception for serious fetal anomaly—in other words, disability. While Utah is not alone in its inclusion of a disability exception for abortion, S.B. 174 is unique in the language it uses to carve out this exception: the law requires that the fetus has a “uniformly diagnosable and uniformly lethal” defect. This article explores the medical-legal mismatch in S.B. 174 through an analysis of the statute’s legislative history and its language, an academic and legal database review, and an application of the statutory language to multiple serious genetic diagnoses. In doing so, this paper unpacks just how mismatched these terms are and reveals the massive gap the law will leave between the legal consequences and the medical realities of abortion. (shrink)

Purpose In 2006, the United Nations established the convention on the rights of persons with disabilities. Simultaneously, the UN has adopted the sustainable development goals in 2015 and the 17 goals must be achieved by member states by 2030. Regionally, countries within the Caribbean community have formulated the Kingston Accord and the Declaration of Petion Ville. Both of these two instruments outlined a regional framework on the issue of persons with disabilities. The media, therefore, have axiological roles to play in (...) educating and informing all the stakeholders of these programmes, policies and legislation. It is within this context that this researcher did a qualitative assessment of how the media within Caribbean societies have been aiding the process of developmental transformation for PWDs. The main purpose of this paper therefore; is to show that if the varied programmes and policies relating to PWDs within the Anglophone Caribbean are to be successfully implemented, digital and traditional media will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. The main purpose of this paper therefore; is to show that if the varied programmes and policies relating to PWDs within the Anglophone Caribbean are to be successfully implemented, digital and traditional media will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. Design/methodology/approach The central argument guiding this paper is that if the varied programmes and policies relating to PWDs within the Caribbean are to be successfully implemented, the media, in all its forms, will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. The unequivocal questions that have been answered are how and what are the media doing to aid in the transformation of the lives of PWDs in the Caribbean? Are they fulfiling their social and ethical responsibilities? Findings The major finding is that the media in the Anglophone Caribbean has significant work to do to fulfil one of its social and ethical responsibilities in aiding the developmental transformation of PWDs in the region. Research limitations/implications The research is limited by the fact that there is serious data scarcity on the population of PWDs in the region. Serious research on the population is just emerging and this will change significantly over the next few years. Practical implications The practical implication of this study is that it will bring to the forefront of the media in the Caribbean, the importance of placing issues relating to PWDs on the development agenda in a consistent manner. Social implications PWDs will be brought in the mainstream of Caribbean society over time. Originality/value This is an original study and will undoubtedly contribute to a greater understanding of the media and PWDs in the Caribbean. (shrink)

National, European, and international institutions should implement social policies to help the persons with disabilities. Strategic sectors include education, training, and work, with the equal protection of the laws. In addition, this essay is focused on another crucial “sector" that is part of the primary law, which include tourism along with public transportation and non-discrimination. In conclusion, legislators, and public institutions, as well as transport companies must comply the principles of accessibility, equality, and social justice for the social inclusion of (...) persons with disabilities. (shrink)

This letter was submitted to the Senate Standing Committee on Legal and Constitutional Affairs, Government of Canada, on 29th January, 2021, as final debate over Bill C-7 was being undertaken in the Senate regarding MAiD and the strong opposition to the legislation expressed across the Canadian disability community. It draws on our individual and joint work on eugenics, well-being, and disability.

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)

In this article, I will examine the category ‘subject to be dealt with’, which was established by the 1913 Mental Deficiency Act. Designed to demonstrate the legislation's respect for individual liberty, the boundaries of the category established the grounds on which authorities had the responsibility to act upon those deemed to be ‘mentally defective’. In essence, ‘subject to be dealt with’ became the supposedly rational, measured qualifying category through which the condemnation of ‘defect’ could be operationalized. In both its actual (...) implementation and the realm of possibilities it entailed, the category of ‘subject to be dealt with’ facilitated a range of discourses and practices. It powerfully linked disability and the imperatives of segregation and confinement, a logic that was reinforced even by those critiquing the Mental Deficiency Act, at both its inception and its demise. As a category ‘subject to be dealt with’ at once intensively targeted carceral power on disability, while also working to more deeply ideologically enmesh cognitive and class deviance, naturalizing the broader carceral or institutional archipelago – of asylums, workhouses, special schools, prisons, and so on – to which disabled, poor, and racialized people have been subject. (shrink)

This article focuses on the issues related to obtaining the status of a military invalid and the changes in the policies and rules of this process in Russia in the post-revolutionary period. Particular attention is paid to the process of medical examination, its bureaucratic practices and forms of documentation. The key role of the examination for the material well-being and stability of the status of a military invalid led to several demands, dissatisfactions and calls for changes in the system that (...) had been in place since the beginning of World War I. This became possible with the emergence of new state aid institutions in 1917 (from the Ministry of State Patronage to the later People’s Commissariat of Social Welfare) and forms of self-organisation (the Union of Maimed Warriors). The problem of military invalids during the organisational changes of 1917-1918 is analysed from the perspective of the actors involved, their institutional positions and their motivations. These discussions are seen as a space to produce knowledge about the disabled body, as well as to control over it, and raise a number of questions about existing and proposed taxonomies of disease and injury, methods of diagnosis, and communities of experts involved in determining disability. Special attention is paid to the position and role of the military invalids themselves, who, in the conditions of the postrevolutionary period, expanded their sphere of action by referring to the “conquered” right to vote. On the basis of archival material from state relief institutions and departments of the Union of Maimed Warriors, legislative acts and periodicals, the article shows how the increasing concretization of the affected body was justified as a benefit to the state and to the disabled warrior, what community of experts was gathered around the disabled body, and what role the Act on the Results of Medical Examination played in the communication between a military invalid and state relief institutions. (shrink)

Cet article s’intéresse aux considérations prises en compte par les employeurs en réponse à une mesure de politique sociale qui les oblige recruter des personnes en situation de handicap. Nous examinons si et comment les employeurs façonnent leur gestion des ressources humaines en fonction de leur contexte organisationnel. La décision d’embaucher une personne en situation de handicap est positionnée en référence au cadre théorique Contextual Strategic Human Resource Management (SHRM). Dans une étude qualitative menée auprès de 38 employeurs néerlandais considérés (...) comme inclusifs ou comme ayant une attitude positive, neutre ou vis-à-vis de l’emploi de personnes handicapées, trois questions ont été étudiées: (1) Suite aux nouvelles mesures législatives, quelles sont les considérations stratégiques que les employeurs prennent en compte dans leur décision d’embaucher (ou non) des personnes handicapées?; (2) Quelles conditions doivent être remplies pour considérer le cadre organisationnel comme propice à l’embauche de personnes handicapées; (3) Comment les employeurs embauchent-ils des personnes handicapées en fonction de leur politique de gestion des ressources humaines? Cet article prouve que les employeurs réagissent de manière contextuelle et stratégique à une pression institutionnelle, et qu’ils considèrent différents niveaux d’ajustement (environnemental, stratégique, organisationnel et interne). Une approche personnalisée est donc nécessaire pour motiver les employeurs à embaucher des personnes handicapées. (shrink)

L’article explore la question de la politique d’emploi et le fonctionnement du système de soutien à l’activité professionnelle des personnes en situation de handicap mental en Pologne. Les analyses sont basées sur des données provenant d’un projet de recherche plus large: Emploi et handicap. Reconstructions des expériences professionnelles des personnes en situation de handicap mental en Pologne. L’objectif du projet était de connaître la situation professionnelle de ces personnes en termes de politique d’emploi, de pratiques d’accompagnement sur les lieux de (...) travail et d’expérience professionnelle des salariés handicapés, de leurs accompagnateurs et des coordinateurs de projets de soutien professionnel. Le cadre méthodologique du projet s’appuie sur la théorie ancrée, basée sur le constructivisme social, dans la version présentée dans les travaux de K. Charmaz, l’analyse du discours et l’analyse sociologique des pratiques. Le matériau de recherche a été collecté dans 25 lieux de travail de personnes handicapées, dans différentes régions de Pologne, principalement au moyen d’entretiens approfondis, d’observations et de notes de terrain. Les analyses portant sur de la politique d’emploi polonaise indiquent une promotion de l’activité professionnelle des personnes en situation de handicap mental. Cependant, sa mise en œuvre est difficile. Les difficultés résultent de la mauvaise qualité du droit régissant l’activité professionnelle, de l’absence de solutions législatives adéquates, de barrières au niveau des employeurs et de l’absence de soutien financier suffisant. (shrink)

The wording of major human rights texts—constitutions and international treaties—is very similar in those provisions, which guarantee everyone the right to family, privacy, protection against discrimination and arbitrary detention, and the right to access the court. However, judges of lower national courts, constitutional judges and judges of the European Court of Human Rights often read the same or seemingly the same texts differently. This difference in interpretation gives rise not only to disputes about the hierarchy of interpretative authorities, but to (...) more general disputes about limits of judicial construction and validity of legal arguments. How it may happen, that the national courts, which apply constitutional provisions or provisions of national legislative acts, which are seemingly in compliance with the international human rights standards, come to different results with the international judges? Do they employ different interpretative techniques, share different values or develop different legal concepts? Do international judges ‘write’ rather than ‘read’ the text of the Convention? Who is, in Plato’s terms, a name-giver and who has a power to define the ‘correctness’ of names? The answers to these questions from the rhetorical and semiotic perspectives are exemplified by the texts of the judicial decisions on the rights of persons with mental disabilities. (shrink)

Following the acquittal of Dr Leonard Arthur in the case of the Down's syndrome infant the co-authors of the first paper in this symposium prepared a draft bill on the treatment of chronically disabled infants which has since been informally commended by the Director of Public Prosecutions. A second contributor, a law student, also argues for legislation as being the most effective way for society to have its standards clarified and observed. In a final paper Dr Havard, Secretary of the (...) British Medical Association, opposes legislation believing it would raise far more problems than it would resolve. The first article was originally published in the Law Society's Gazette. (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)

This study assesses the extent to which job application forms violate the New Zealand Human Rights Act. The sample for the study includes 229 job application forms, collected from a variety of large and small, public- and private-sector organizations that together employ approximately 200,000 workers. Two hundred and four or 88% of the job application forms contain at least one violation of the Act. One hundred and sixty five or 72% contain two or more and 140 or 61% contain three (...) or more violations. The most common violations concern age, gender, nationality, and disability. The least common concern political opinion, ethical belief, religious belief, and sexual orientation. Despite widespread violations, many forms do have non-discriminatory questions that yield the same kind of useful information as discriminatory questions. Employers could incorporate these into their job application forms to bring themselves into compliance with the law. The same lessons also generally apply to North American employers, given the high degree of comparability between American, Canadian, and New Zealand anti-discrimination laws. (shrink)

This paper discusses legal and ethical issues related to genetic screening. It is argued that persons identified with actual or perceived deleterious genetic markers are protected by the American with Disabilities Act of 1990 and the Civil Rights Act of 1991, if members of a protected group, regardless of whether or not they are currently ill. However, legislation may not protect all employees in all scenarios, in which case, ethical principles should guide decision-making. In doing so a model of preventive (...) ethics is proposed to better understand the multiple levels on which this issue resides. (shrink)

This article defends the classical liberal view of human interactions that gives strong protection to associational freedom except in cases that involve the use of force or fraud or the exercise of monopoly power. That conception is at war with the modern antidiscrimination or human rights laws that operate in competitive markets in such vital areas as employment and housing, with respect to matters of race, sex, age, and increasingly, disability. The article further argues that using the “human rights” (...) label to boost the moral case for antidiscrimination laws gets matters exactly backwards, given that any program of forced association on one side of a status relationship (employer, not employee; landlord, not tenant) is inconsistent with any universal norm governing all individuals regardless of role in all associative arrangements. The articled also discusses the tensions that arise under current Supreme Court law, which protects associational freedom arising out of expressive activities (as in cases involving the NAACP or the Boy Scouts), but refuses to extend that protection to other forms of association, such as those involving persons with disabilities. The great vice of all these arrangements is that they cannot guarantee the stability of mandated win/lose relationships. The article further argues that a strong social consensus against discrimination is insufficient reason to coerce dissenters, given that holders of the dominant position can run their operations as they see fit even if others do otherwise. It closes with a short model human rights statute drafted in the classical liberal tradition that avoids the awkward line drawing and balancing that give rise to modern bureaucracies to enforce modern antidiscrimination laws. (shrink)

RESUMEN: Este artículo analiza el sentido e implicaciones del Artículo 12 de la Convención Internacional sobre los Derechos de las Personas con Discapadad a la luz de la Observación General Nº1 de su Comité y se centra en determinar su impacto en el régimen general de atribución de personalidad y capacidad jurídica y en el ámbito del Derecho Privado y de Familia del Estado de Qatar. ABSTRACT: This paper analyzes the meaning and implications of Article 12 of the International Convention (...) on the Rights of Persons with Disabilities in the light of the General Comment No. 1 of its Committee. It focuses on determining the impact of this General Comment to the general regime of personality and capacity attribution in the field of Private law and Family law on Qatar. PALABRAS CLAVE: capacidad jurídica, CDPD, derecho privado, legislación qatarí. KEYWORDS: legal capacity – CRPD – private law – Qatari legislation. (shrink)

The harm usually associated with psychopathy requires therapeutically, legally, and ethically satisfactory solutions. Scholars from different fields have, thus, examined whether empirical evidence shows that individuals with psychopathic traits satisfy concepts, such as responsibility, mental disorder, or disability, that have specific legal or ethical implications. The present paper considers the less discussed issue of whether psychopathy is a disability. As it has been shown for the cases of the responsibility and mental disorder status of psychopathic individuals, we argue (...) that it is undecided whether psychopathy is a disability. Nonetheless, based on insights from disability studies and legislations, we propose that interventions to directly modify the propensities of individuals with psychopathic tendencies should be balanced with modifications of the social and physical environments to accommodate their peculiarities. We also suggest how this social approach in some practical contexts that involve non-offender populations might be effective in addressing some of the negative effects of psychopathy. (shrink)

So-called “ugly laws” were mostly municipal statutes in the United States that outlawed the appearance in public of people who were, in the words of one of these laws, “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” (Chicago City Code 1881). Although the moniker “ugly laws” was coined to refer collectively to such ordinances only in 1975 (Burgdorf and Burgdorf 1975), it has become the primary way to refer to such laws, (...) which targeted the overlapping categories of the poor, the homeless, vagrants, and those with visible disabilities. Enacted and actively enforced between the American Civil War (1867) and World War I (1918), such laws and their enforcement can tell us much about the very sorts of people who were also, a generation later, subject to explicitly eugenic laws, such as sterilization legislation. And like eugenic laws and policies, such laws continue to affect the lives of people with disabilities to this day (Schweik 2011). (shrink)

Legislation on Disability/ Functional Diversity in Spain has experimented a great advance since 1982 to 2013, leaving the initial orientation, based on care and rehabilitation, toward another one based on rights and social inclusion as main objectives. However, this legislation has not been effective because in the same lap of time another transformation made it useless: the suppression of social rights that came from Keynesian politics and the progressive neoliberal ideology implantation. The evolution of People with Disability/ Functional (...) Diversity labour situation illustrates the imposition of what we name neoliberal “ableisment” over PFD labour rights. (shrink)

In 2006, a WHO survey found evidence of a substantial increase in patient-led litigation against health authorities and funders over access to medicines around the world. New Zealanders have seldom litigated denials of access to health care. Part of the explanation lies in the fact that New Zealand has a legislated patients' "bill of rights", with enforcement through a complaints mechanism. Although the separate regime does not afford patients substantive legal protection in respect of complaints about lack of access to (...) care, this form of alternative, low-level resolution of health care disputes does condition disgruntled patients not to turn to the courts for legal redress in relation to their rights. But given the increasing need for prioritization arising from serious concern about the sustainability of the public health system, as well as a trend towards greater explicitness when it occurs, increased disappointment on behalf of patients and the public when care is denied or limited seems inevitable. This may well translate into increased patient-led litigation against health boards and funders. Part 1 provides an overview of the New Zealand health system, with a focus on the points at which resource allocation decisions are made, the identity of the decision-maker, and the methods by which priority-setting occurs. Part 1.1 describes inequalities between population groups in New Zealand, both in health outcomes and in access to health care. Part 2 describes the legal framework surrounding the health and disability sector, and discusses the lack of legislated rights to health and the limited right of access to health care in legislation, despite the existence of a legally enforceable Code of Health and Disability Services Consumers' Rights. (shrink)

The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger that the genetic (...) information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU. (shrink)

The concept of school inclusion applied to disabled children knows an international distribution and is more or less used in national contexts, but with wide variations in interpretation. The concept of disability tends to be supplanted by other terms such as «special needs». These notional transformations are at the heart of the tensions that exist within the education system and also perform in their relations with various external partners, including experts of disability and parents. The major issues are (...) those of the educational finalities of the institutions and practices for these children: separate or common socialization, people development or acquisition of knowledge, perspectives of skilled labor or not etc. Among the possible approaches to the current problem, the first step is the analysis of the regulatory and institutional legislative, established in France for so-called «disabled» children. The second step is favored by the approach of ethnographic field which has the advantage of showing the representations and practices of actors in everyday life. The example developed is that of an elementary school in the city of Paris, which seeks to meet the challenge of hosting the difference while maintaining the goal of «academic excellence.» In this tension, how are teachers, specialists, parents, children with disabilities among their peers? What finally are the evolutions outlook? (shrink)

The petitions received and the letters sent by the Papal Chancery between the 12th–14th century attest the recognition of invalidity by the Papacy. They acknowledge the existence of a physical or mental infirmity and allow the supplicant to adapt his or her missions of cleric or Christian according to his or her abilities. These documents lie at the boundary between the institutional word and practical sources. Supplicant’s solicitations bring about an intense and complex epistolary production, whose main actors are the (...) disabled individuals and the curial and ecclesiastical personnel. They reveal the specific legislation of the institution and lead to a definition of infirmity by the Papal Chancery, one that categorizes invalid bodies according to their physical or mental condition. Curia’s replies to solicitations, based on a case law system, constitute further evidence of the recognition of the disabled person’s condition. The supplications and letters thus constitute an excellent laboratory of analysis to study medieval disability in its relation to the Papacy as an institution. (shrink)

The Disabilities Act of 1990 and the Developmental Disabilities Assistance and Bill of Rights Act of 2000 of United States in act to prevent social exclusion of people with intellectual and developmental disabilities (IDDs) and to cut back on unneeded expenditures to society. However, despite the protective legislation, the rights of adults with neurodevelopmental disorders have not yet been fully realised. There are several obstacles to overcome the neurological development related health care services, including health care usage, educational and career (...) pathways, family and social lives, self-fulfilment, and quality of life. There are significant gaps in the transition process that affect the health care systems. Lack of transition and transfer planning, neurodevelopmental disorder health care pathway services have lack of experience, education, and expertise which result the inadequate growth of the health care quality and create communication gap in between service providers and service users. The aim of this short communication is to mention and clarify the ethical concerns of neurodevelopmental service evaluation. (shrink)

Inclusive education is a process that integrates students with special needs inmainstream schools, providing them with appropriate support and adaptations. Thispaper discusses the differences between mainstream and special education, focusing onthe right to education, aims and approaches, responsibilities and competences, curricula,focus of education, teacher preparation, learning conditions, teaching methods, learningstandards, assessment and evaluations, teacher competencies, educational researchand legislation. In Macedonia, inclusive education started in 1998 and is still in theprocess of development, aimed at the full inclusion of students with disabilities, (...) which isstipulated in the Law on Basic Education passed in 2019.The methodology includes an analysis of existing research and laws, as well as acomparative study of regular and special education. Data from relevant sources such asEuropean and national education agencies, UNICEF reports and laws on special educationwere used. This methodology enables a detailed overview of the current situationand challenges in inclusive education.The conclusion is that although significant efforts have been made for theintegration of students with special needs in mainstream schools, there are manychallenges that need to be overcome. Better support for teachers, more resources andfunding, and a change in attitudes of the society are needed. With appropriate measuresand policies, real inclusion and quality education for all students can be achieved. (shrink)

The case of Terri Schiavo, a young woman who spent 15 years in a persistent vegetative state, has emerged as a watershed in debates over end-of-life care. While many observers had thought the right to refuse medical treatment was well established, this case split a family, divided a nation, and counfounded physicians, legislators, and many of the people they treated or represented. In renewing debates over the importance of advance directives, the appropriate role of artificial hydration and nutrition, and the (...) responsibilities of family members, the case also became one of history's most extensively litigated health care disputes. The Case of Terri Schiavo assembles a team of first-hand participants and content experts to provide thoughtful and nuanced analyses. In addition to a comprehensive overview, the book includes contributions by Ms. Schiavo's guardian ad litem, a neurologist and lawyer who participated in the case, and scholars who examine issues related to litigation, faith, gender, and disability. The volume also includes a powerful dissent from the views of many scholars in the bioethics community. The book is intended for students, health care professionals, policy makers, and other in search of carefully reasoned analyses of the case that will shape our view of death and end-of-life medical care for decades. (shrink)

In 2019, a new national Ethics Review Authority (Etikprövningsmyndigheten, EPM) was created in Sweden. In 2020, Sweden’s Ethical Review of Research Involving Humans Act was revised, tightening this legislation, and increasing penalties for its infraction. This article draws on empirical material generated by artistic research conducted with a norm-critical contemporary music ensemble. Two of the musicians who collaborated with this research identify as disabled. Consequently, in accordance with EPM, my artistic research was subject to mandatory ethics review. Reflecting critically on (...) my own experience of seeking ethical approval for this artistic research project, I show how EPM’s process of ethics review enacts scientific boundary work in Sweden that privileges the interests of academic disciplines that are already well-established. As a corrective to EPM’s scientific boundary work I propose the application of an ethics of care that recognises the complex relationalities that exist between research institutions, researchers and research participants. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.2 (2003) 193-194 [Access article in PDF] A Comment on Christopher Ciocchetti:"The Responsibility of the Psychopathic Offender" Daniel W. Shuman Questions of responsibility for serious harm are complex and potentially divisive. The way in which we frame these questions and the criteria by which we assess answers to them are colored, in part, by the lens though which we view them. I am a law (...) professor whose writings includes issues relating to criminal responsibility of person with mentally disabilities and I come to this commentary from that perspective. For me questions of moral responsibility raise psychological and philosophical, as well as legal, questions.Ciocchetti's (2003) paper addressees the criminal responsibility of the psychopathic offender. Not sure quite what the author meant by this label, I began to try to understand the concept of psychopathic offender by picking up my DSM-IV-TR and found no reference to such a diagnostic category. Absent a handy reference in the DSM, I looked in the paper for some other definition or recognition of the category of psychopathic offender and found no satisfactory grounding in any body of sound research. Left with the author's unsupported assertions that such a category of persons exists and that they behave in ways the author asks me to accept without support, my lawyer instincts cautioned me to proceed carefully. The psychopathic offender the author describes might well exist, but I am not persuaded of that, nor would be my legal colleagues, absent proof.Next, to the author's thesis that "[t]he offender must have the capacities necessary to understand relationships to justify holding that offender responsible" (p. 176) and that because psychopaths lack this capacity they should not be held criminally responsible. Is the author proposing a new test for criminal responsibility? Certainly no test for criminal nonresponsibility based on mental disability (i.e., insanity defense) in Anglo-American jurisprudence, or any other with which I am familiar, makes status (i.e., a diagnostic category) exculpatory for criminal responsibility. Rather, every test addresses the impact of a mental illness or disorder on the cognitive or volitional capacity of the offender at the time of the offense. The author offers no reason to reject the approach taken for the last several hundred years [End Page 193] by Anglo-American jurisprudence. Moreover, to the extent that status or diagnostic category is relevant in the insanity defense in Anglo-American jurisprudence, character or personality disorders (the genus to which I take it that psychopathy belongs) are often specifically excluded from consideration. For example, the Texas Penal Code (Tex. Penal Code Ann. § 8.01 (Vernon 1994)) states that:It is an affirmative defense to prosecution that, at the time of the conduct charged, the actor, as a result of a severe mental disease or defect, did not know that his conduct was wrong. The term "mental disease or defect" does not include an abnormality manifested only by repeated criminal or otherwise antisocial conduct.The federal Insanity Defense Reform Act raises the same issue: The government relies on the legislative history of 18 U.S.C. § 17, which states: "The concept of severity was added to emphasize that non-psychotic behavior disorders or neuroses such as an 'inadequate personality,' 'immature personality,' or a pattern of 'antisocial tendencies' do not constitute the defense.".... The government argues that because Dr. Lorenz would have testified that Salava was not psychotic but suffered from antisocial personality disorder, his testimony was not relevant to either prong of the insanity defense under the statute.... As a general matter, the government's point is well-taken. It seems clear that Congress intended by its inclusion of the modifier "severe" to place certain "disorders" outside the purview of the insanity defense altogether. United States v. Salava, 978 F.2d 320, 323 (7th Cir. 1992) Nowhere in the paper does Chiochetti acknowledge or address these societal judgments of moral responsibility that have already rejected a far more modest version of his proposal in categorically ruling out character or personality disorders from inclusion as... (shrink)

Train crashes cause, on average, a handful of deaths each year in the UK. Technologies exist that would save the lives of some of those who die. Yet these technical innovations would cost hundreds of millions of pounds. Should we spend the money? How can we decide how to trade off life against financial cost? Such dilemmas make public policy is a battlefield of values, yet all too often we let technical experts decide the issues for us. Can philosophy help (...) us make better decisions? Ethics and Public Policy: A Philosophical Inquiry is the first book to subject important and controversial areas of public policy to philosophical scrutiny. Jonathan Wolff, a renowned philosopher and veteran of many public committees, such as the Gambling Review Body, introduces and assesses core problems and controversies in public policy from a philosophical standpoint. Each chapter is centred on an important area of public policy where there is considerable moral and political disagreement. Topics discussed include: Can we defend inflicting suffering on animals in scientific experiments for human benefit? What limits to gambling can be achieved through legislation? What assumptions underlie drug policy? Can we justify punishing those who engage in actions that harm only themselves? What is so bad about crime? What is the point of punishment? Other chapters discuss health care, disability, safety and the free market. Throughout the book, fundamental questions for both philosopher and policy maker recur: what are the best methods for connecting philosophy and public policy? Should thinking about public policy be guided by an ‘an ideal world’ or the world we live in now? If there are ‘knock down’ arguments in philosophy why are there none in public policy? Each chapter concludes with ‘Lessons for Philosophy’ making this book not only an ideal introduction for those coming to philosophy, ethics or public policy for the first time, but also a vital resource for anyone grappling with the moral complexity underlying policy debates. (shrink)

What we know of citizenship, marriage and political status in Athens in the fourth century suggests that they were matters of no little public concern governed by a body of law which left few, if any, significant loopholes or anomalies. The ‘descent group’ criterion for citizenship had triumphed over the possible alternatives. The fundament of the system was the Periklean law of 451/0, re-enacted in 403/2, and prescribing double endogamy — that is, citizen birth through both parents — as the (...) normal qualification for a citizen . Whether this fifth-century legislation declared mixed marriages positively invalid or merely deterred them indirectly, through the disabilities falling upon the children, remains unclear. It is certain, however, that by the time [Demosthenes] 59 was delivered, in the 340s, both the parties to and the accessories in such marriages were breaking the law. ‘At that time an alien who joined the oikos of a citizen as husband or wife could be prosecuted by graphe and, if found guilty, was sold as a slave; the citizen man who thus received an alien woman into his oikos as his wife was fined 1000 drachmas. A man who, acting as her kyrios, gave an alien woman to a citizen for marriage could also be prosecuted by graphe, and if he was found guilty he was disfranchised and his property was confiscated’. (shrink)

The question of whether problems with the social determinants of health that might impact decision-making justify denying eligibility for assisted dying has recently come to the fore in debates about the legalisation of assisted dying. For example, it was central to critiques of the 2021 amendments made to Canada’s assisted dying law. The question of whether changes to a country’s assisted dying legislation lead to descents down slippery slopes has also come to the fore—as it does any time a jurisdiction (...) changes its laws. We explore these two questions through the lens of Canada’s experience both to inform Canada’s ongoing discussions and because other countries will confront the same questions if they contemplate changing their assisted dying law. Canada’s Medical Assistance in Dying law has evolved through a journey from the courts to Parliament, back to the courts, and then back to Parliament. Along this journey the eligibility criteria, the procedural safeguards, and the monitoring regime have changed. In this article, we focus on the eligibility criteria. First, we explain the evolution of the law and what the eligibility criteria were at the various stops along the way. We then explore the ethical justifications for Canada’s new criteria by looking at two elements of the often-corrosive debate. First, we ask whether problems with the social determinants of health that might impact decision-making justify denying eligibility for assisted dying of decisionally capable people with mental illnesses and people with disabilities as their sole underlying medical conditions. Second, we ask whether Canada’s journey supports slippery slope arguments against permitting assisted dying. All data relevant to the study are included in the article. (shrink)