Without extending the historical analysis, this article analyzes the relationship between the legal concept of person with regard to the notion of living independently. The concept is normatively established in Article 19 of the CRPD and is presented as a legal fiction. The legal technique of fictio iuris is the premise for analyzing contemporary problems, for example, the attribution of responsibilities to non-human personalities, such as robots. The article, however, develops the problem of attributing rights to persons (...) with disabilities. The contraposition of robots and disabled people, understood as opposing visions of anthropological and human models, is part of the philosophical dispute between humanism and post- or transhumanism. The conception of man appears different if created in the image and likeness of God, or as the fruit of evolution from primates, or as a transhumanist entity that can be replaced by the robot. The latter vision is rooted in the mechanization of the mind triggered by cybernetics and cognitive sciences and referable to problems of justice theory and political philosophy concerning the inclusion in society of disabled people. In this article I will limit myself to analyzing, against the background of this complex problem, the link between person, legal fiction and the right to disability starting from the criticism addressed by Nussbaum to Rawls based on the convention and following the methodology developed by Marchisio and Curto in order to clarify the legal connection between thirdness, disability, and person.However, I go one step further by including the issue of disability as justice within the evolution of the notion of the legal person, through the inclusion of fictio iuris and rhetorical methodology in positive law, as a criterion for the interpretation of art. 19 CRPD. (shrink)

The UN Convention on the Rights of Persons with Disabilities (CRPD) withits Optional Protocol is the first binding legal act and leading international instrumentregarding the rights of persons with disabilities. One of the principles of CRPDis “respect for inherent dignity, individual autonomy including the freedom to makeone’s own choices and independence”, whereby persons with disabilities are recognizedas holders of rights taking into account their specific situation. CRPD recognizes (...) inArticle 6 that “women and girls with disabilities are subject to multiple discrimination”and mandates signatory countries to “take measures to ensure their full and equalenjoyment of all human rights and fundamental freedoms.” The research was done inorder to examine the readiness of the state to institutionally cover the awareness of girlsand women with disabilities, their education on the issue of violence, access to servicesand information appropriate to the needs of each category separately, as well as systemicsolutions for their protection from violence. A qualitative research strategy was applied,and the research was conducted with representatives of the Centers for Social Work, representativesfrom the Ministry of Labor and Social Policy, professionals who are directproviders of services in the field of non-family protection, as well as the girls and womenwith disabilities themselves. The main conclusions that emerge from the research saythat girls and women with disabilities are more susceptible to violence, especially bytheir partners or family members. More awareness is needed to recognize and encouragereporting of violence. (shrink)

Whereas right-libertarians do not think that it is a requirement of justice that we raise revenues for persons with disabilities, both left-libertarians and liberal egalitarians think that there is such a requirement. An issue remains for the latter two theorists—how ought we to raise this revenue? Liberal egalitarians typically endorse either universal taxation or taxation of the wealthy. Left-libertarians, on the other hand, cannot so easily appeal to the methods of universal taxation and taxation of the wealthy, (...) as they are illegitimately coercive. One such method left open to the left-libertarian is one proposed by Michael Otsuka. He argues that both left-libertarians and liberal egalitarians should find the method of taxation of the unjust to be a reasonably strong way of raising revenue. In this paper, I point out problems with Otsuka’s argument, as well as directly criticize the method of taxation of the unjust. (shrink)

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

Policy motives for work for people with a disability (PWD) are divergent along two discourses: work as a right vs norm. Work as a right, based on the UN Convention on the Rights of Persons with Disabilities (UNCRPD), portrays work as a potential gateway for inclusion. Work as a norm fits a neoliberal agenda. It considers labor market participation of all, including PWD, as a civil responsibility crucial for economic welfare. Critics argue that the (...) work as a norm discourse presents a risk for inclusion of PWD. Work is seen as a necessary condition for and not one of many ways to inclusion in society. To make the right to work for PWD work, critical scholars call to unravel whether and how the discourses of work as a right and norm for PWD become intertwined in policy. In response and through the lens of recontextualization, we study how discourses of work as a right and norm for PWD are received, reproduced and reworked in political debate in Flanders (Belgium) over time. We examine policy texts and parliamentary questions of four government terms (2004–2024). The findings illustrate how the work as a right discourse is gradually recontextualized into the work as a norm discourse to legitimize neoliberal policies of strict activation. In accordance, we see a gradual move towards neoliberal-ableism. Although the UNCRPD aims to eradicate ableism, its recontextualization and appropriation reinforces neoliberal-ableism. (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 (...) class='Hi'>Disabilities (and the Optional Protocol) are also considered. (shrink)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the (...) Rights of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (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)

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

A crucial question in relation to support designed to enable the legal capacity of people with mental disabilities concerns when support constitutes undue influence. This article addresses this question in order to facilitate the development of law and policy in England and Wales, by providing a normative analysis of the different approaches to undue influence across decisions about property, contracts, health, finances, and accommodation. These are all potential contexts for supporting legal capacity, and, in doing so, the article (...) compares approaches to undue influence that are rarely considered together. -/- Drawing on the UN Convention on the Rights of Persons with Disabilities, third sector and public body documents, and law in England and Wales, the analysis identifies six models that conceptualise undue influence in terms of: modes of influence; an overborne will; an inference from the situation; an overborne will understood as a mental incapacity; an overborne will in connection with vulnerability; and impaired discursive control. This final approach is a novel proposal for understanding undue influence. The analysis highlights key policy-relevant issues that distinguish the models, and generates a deliberative framework for navigating them, with the ‘overborne will’, ‘inference-based’, and ‘discursive control’ models identified as potentially fitting for the support context. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being used to argue for wider recognition of the legal capacity of people with mental disabilities. This raises a question about the implications of the Convention for attributions of criminal responsibility. The present paper works towards an answer by analysing the relationship between legal capacity in relation to personal decisions and criminal acts. Its central argument is that because moral (...) and political considerations play an essential role in setting the relevant standards, legal capacity in the context of personal decisions and criminal acts should not be thought of as two sides of the same coin. The implications of particular moral or political norms are likely to be different in these two legal contexts, and this may justify asymmetries in the relevant standards for legal capacity. However, the analysis highlights a fundamental question about how much weight moral or political considerations should be given in setting these standards, and this is used to frame a challenge to those calling for significantly wider recognition of the legal capacity of people with mental disabilities on the basis of the Convention. (shrink)

This article asks whether personal ventilators should be redistributed to maximize lives saved in emergency condition, like the COVID-19 pandemic. It begins by examining extant claims that items like ventilators are literally parts of their user’s bodies. Arguments in favor of incorporation for ventilators fail to show that they meet valid sufficient conditions to be body parts, but arguments against incorporation also fail to show that they fail to meet clearly valid necessary conditions. Further progress on this issue awaits clarification (...) of difficult normative, conceptual, and metaphysical questions about the possible boundaries of a person’s body. Rather than relying solely on incorporation arguments, we propose an argument against reallocation from widely accepted anti-discrimination principles. Possession of a personal ventilator is an obvious marker of disability identity; thus, reallocating ventilators from those that already possess them discriminates on the basis of a stigmatized trait – a paradigm case of presumptively wrongful discrimination. This discrimination claim, taken together with uncertainty about the bodily status of ventilators, yields a strong presumption against personal ventilator reallocation. (shrink)

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types, and this starts before the age of 18. Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due (...) to their disability. Moving away from this generalization, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity. (shrink)

In this article, we present findings from a participatory action research program in France on the exercise of human rights and supported and substitute decision-making, inspired by the United Nations Convention on the Rights of Persons with Disabilities (“CRPD”). Bringing together persons with the lived experience of disability, academics, and health and social care and support professionals, the project used the method of “experience-based construction of public problem” to transform experience into collective (...) expertise. This enabled the exploration of support that persons in vulnerable situations, whose capacity to exercise their human rights has weakened, need to make decisions in their lives and participate meaningfully in public debate. The relationship between the awareness of rights and exercise of rights is discussed. We argue for the need to balance out the positions of different contributors in participatory action research, in a reasoned manner, by recognizing the scientific and citizen-based participation of all partners. (shrink)

The Convention on the Rights of Persons with Disabilities is increasingly seen as driving a paradigm shift in mental health law, particularly in relation to the understanding that it requires a shift from substituted to supported decisions. This article identifies two competing moral commitments implied by this shift, both of which appeal to the notion of autonomy. It is argued that because of these commitments the Convention is in tension with more general calls (...) in the medical ethics literature for preserving patient autonomy through support. The competing commitments within the Convention also present a particular challenge in putting the support it requires into practice. A discursive control account of freedom is used to develop some practical guidelines for navigating this new moral territory. (shrink)

The UN Convention on the Rights of Persons with Disabilities (CRPD) was passed in 2006 and came into force in 2008. It sets out a number of core values, including dignity, individual autonomy, non-discrimination, participation and community inclusion. Although the CRPD has been recognised as an important step forward by many disabled people and their supporters and provides the foundation for building a good life, the author argues that it does not necessarily equate with (...) it. The underpinning Western values of choice, independence and control are important, but leave out groups of marginalised people for whom these goals may not be achievable. They also present challenges and dilemmas for those involved in supporting/caring roles. In this paper, the author reflects on the implications of the CRPD for the lives of people with learning disabilities, in particular those with profound needs and explores whether it provides a genuinely coherent framework for an inclusive society. (shrink)

Hospitalized patients lacking the mental capacity to consent to treatment may demand to be discharged from the hospital against medical advice. Forced custody of these patients, including the use of restraints, may be required if the plan is to proceed with treatment. This raises ethical concerns with regard to depriving people of their liberty. The determination of the wishes and values of the patient and her best interests may sometimes vary, depending on the assessor or the clinical team (...) entrusted to perform the evaluation. We therefore propose the following triad for clinicians when determining the best interests for this group of patients to ensure ethical and legal soundness as well as in providing consistency in approach. Firstly, the treatment should serve as a rescue response. Secondly, any restraint deployed must be proportionate with a foreseeable end. Her liberty and autonomy interests should be enhanced by the treatment. Thirdly, the patient’s family must be supportive. This paper analyzes the use of the triad approach on two clinical cases, both assessed as lacking in mental capacity to decide on treatment and insisting to be discharged. Using this approach, we could justify how the contrasting outcomes, one in which the voluntary discharge was acquiesced versus the other, which was not acquiesced, were reached. We also examine the compatibility of the triad approach with the obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). (shrink)

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

In 2014 the Essex Autonomy Project undertook a six month project, funded by the AHRC, to provide technical advice to the UK Ministry of Justice on the question of whether the Mental Capacity Act is compliant with the United Nations Convention on the Rights of Persons with Disabilities. Over the course of the project, the EAP research team organised a series of public policy roundtables, hosted by the Ministry of Justice, and which brought together (...) leading experts to discuss and debate the issues. A one-day public conference was held at the Institute for Government in July. In September 2014, the EAP research team submitted its findings to the Ministry of Justice. (shrink)

In 2014 the Essex Autonomy Project undertook a six month project, funded by the AHRC, to provide technical advice to the UK Ministry of Justice on the question of whether the Mental Capacity Act is compliant with the United Nations Convention on the Rights of Persons with Disabilities. Over the course of the project, the EAP research team organised a series of public policy roundtables, hosted by the Ministry of Justice, and which brought together (...) leading experts to discuss and debate the issues. A one-day public conference was held at the Institute for Government in July. In September 2014, the EAP research team submitted its findings to the Ministry of Justice. (shrink)

The social and cultural model of disability has challenged the historically powerful perception of disability as a deficiency. Disability is no longer conceived of solely in terms of an individual lack of capacities but also considered as a structural effect of disabling social institutions and normalizing thinking. The UN Convention on the Rights of Persons with Disabilities (CRPD) from 2006 marks a decisive step towards the recognition of humans with (cognitive) disabilities as legal (...) subjects who are entitled to enjoy all human rights on equal terms with others. A central claim of the CRPD refers to full political participation of persons with (cognitive) disabilities. This paper argues for strengthening the political participation of persons with severe cognitive disabilities. The normative starting point is the claim that they are our equals, both morally and socially. In spelling out this status equality for the realm of the political, I focus on what political equality and inclusivity means concerning franchise. I will argue that the disenfranchisement of persons with cognitive disabilities, as practiced in many countries, cannot be justified. Furthermore, enfranchising persons with cognitive disabilities is deemed a central expression of their recognition as equals. Thus, it marks a crucial moment of emancipatory transformation towards a more inclusive political system. In cases where severely cognitive disabled persons cannot exercise the right to vote themselves, forms of assisted voting and supported decision-making must be available. (shrink)

A. I. Melden’s earlier writings suggested that the justification for a given moral right is simply the social institution or context in which that right characteristically was involved: "the right that A has is the right that is his moral status or role with respect to B". On this view there is no justification for such rights independent of what can be provided by the particular practices in which they are embedded. Thus, to determine and ultimately to justify (...) the respective moral rights of parents and their children we should look to the "language game" in which they are mutually involved—that of family life—for this is the context in which rights and obligations of this sort have their primary and peculiar place. (shrink)

In 1990 the landmark Americans with Disabilities Act (ADA) became federal law with the express purpose to “establish a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities."l The act includes separate titles prohibiting discrimination on the basis of disability in employment, public services, transportation and public accommodations. Since it prohibits discrimination on the basis of disability in both public and private services and programs, in health care “it applies to (...) programs provided by the government, benefits provided by employers, and services pro- ”2 vided by physicians.Moreover, the ADA defines disability broadly to include “any.. (shrink)

In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide (...) forms of social support the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions. (shrink)

This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential (...) policy solutions. (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 (...) class='Hi'>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)

Criminalisation of prostitution, and minority rights for disabled persons, are important contemporary political issues. The article examines their intersection by analysing the conditions and arguments for making a legal exception for disabled persons to a general prohibition against purchasing sexual services. It explores the badness of prostitution, focusing on and discussing the argument that prostitution harms prostitutes, considers forms of regulation and the arguments for and against with emphasis on a liberty-based objection to prohibition, and finally (...) presents and analyses three arguments for a legal exception, based on sexual rights, beneficence, and luck egalitarianism, respectively. It concludes that although the general case for and against criminalisation is complicated there is a good case for a legal exception. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities, adopted on December 13, 2006, and entered into force on May 3, 2008, constitutes a key landmark in the emerging field of global health law and a critical milestone in the development of international law on the rights of persons with disabilities. At the time of its adoption, the U.N. High Commissioner for Human Rights heralded the CRPD as a (...) rejection of the understanding of persons with disabilities “as objects of charity, medical treatment and social protection” and an embrace of disabled people as “subjects of rights.”The text of the Convention itself, and the highly participatory process by which it was negotiated, signal a definitive break from previous international approaches that focused on disability within a medical model framework. In contrast to traditional approaches, the CRPD embraces a social model of disability, concentrating the disability experience not in individual deficiency, but in the socially constructed environment and the barriers that impede the participation of persons with disabilities in society. (shrink)

One of the most prevalent rationales for public healthcare policies is a human right to healthcare. Governments are the typical duty-bearers, but they differ vastly in their capacity to help those vulnerable to serious health problems and those with severe disabilities. A right to healthcare is out of the reach of many developing economies that struggle to provide the most basic services to their citizens. If human rights to provision of such goods exist, then governments would be (...) violating rights without doing anything wrong. I argue that such variable ability to provide healthcare depends not only on financial resources, but on institutional capacity, and that the latter represents a more fundamental challenge to the existence of a human right to healthcare than previously recognized. This challenge does not imply that government has no obligations to protect and improve the health of their citizens, but that it is best to think of such obligations as generated by conventional rights, namely rights arising from local legal and social conventions, which require governments to pursue health-related moral goals such as reducing suffering, closing opportunity gaps for the disadvantaged, and preventing the spread of contagious diseases. We need not think of such moral goals in terms of human rights. (shrink)

In this issue of Journal of Medical Ethics, Pugh1 offers a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach to the use of genetic test results to underwrite life insurance. We agree with Dr Pugh’s general contention that there is ethical and philosophical support for curtailment of insurers’ access to, and use of, applicants’ GTR in underwriting. However, we disagree with the contention that broad revisionary implications of certain theories (...) of justice render them unpersuasive. In fact, despite the competing theories, the United Nations Universal Declaration on the Human Genome and Human Rights has already made a clear statement on this issue. Article 6 of the Declaration,2 unanimously adopted in 1997 by 77 countries, along with a resolution for its implementation,3 states, ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Further, Article 25 of the UN Convention on the Rights of Persons with Disabilities prohibits discrimination against persons with disabilities in the provision of life insurance. These statements are not contingent on the acceptability of the degree of revisionary implications. They are clear, unambiguous statements about the obligations of signatory countries. Despite this, few countries have taken steps commensurate with this expectation, possibly due to the scale of changes required for proper ratification. However, genetic discrimination is recognised as one …. (shrink)

Compulsory psychiatric treatment is the norm in many Western countries, despite the increasingly individualistic and autonomous approach to medical interventions. Community Treatment Orders are the singular best example of this, requiring community patients to accept a variety of interventions, both pharmacological and social, despite their explicit wish not to do so. The epidemiological, medical/treatment and legal intricacies of CTOs have been examined in detail, however the ethical considerations are less commonly considered. Principlism, the normative ethical code based on the principles (...) of autonomy, beneficence, non-maleficence and justice, underpins modern medical ethics. Conflict exists between patient centred commentary that reflects individual autonomy in decision making and the need for supported decision making, as described in the Convention on the Rights of Persons with Disabilities and the increasing use of such coercive measures, which undermines this principle. What appears to have been lost is the analysis of whether CTOs, or any coercive measure in psychiatric practice measures up against these ethical principles. We consider whether CTOs, as an exemplar of coercive psychiatric practice, measures up against the tenets of principalism in the modern context in order to further this debate. (shrink)

Often advocates for persons with disabilities are resistant to what might appear to be the banal truism that, at bottom, disability is a decrement in health. Disability advocates have long objected to the “medicalization” of disability, when that means focusing entirely on a person’s underlying impairments and ignoring all of the manifold obstacles in his or her environment — e.g., physical, human-built, attitudinal, social, political, and cultural — that makes living with those impairments at least disadvantageous (...) and socially devalued. Over-medicalization is another and well understood problem that people with disabilities are justifiably concerned about. Yet it is somewhat of a mystery why anyone with an impairment would ever deny, or feel uncomfortable being told, that their impairment is a health problem. Surely, people with disabilities are unhealthy, by virtue of their impairments and to the degree according to the severity of those impairments. How could it be otherwise? (shrink)

The “expressivist objection” argues that prenatal screening leading to termination of embryos or fetuses with disabilities sends a harmful message to people with disabilities, such as the message that their lives are not worth living. I first argue that whether it sends such a message depends on how a reasonable person would see the motives behind the screening. I then argue that a reasonable person would see a harmful message, not when individuals terminate embryos, and not (...) for severe disabilities, but when the state allows the screening and termination of embryos with less severe conditions, such as Down syndrome. This sends the message that it is permissible not to pay a higher cost to support people with disabilities, when there is an abled alternative. This attitude is harmful to the welfare, rights and self-worth of people with disabilities because it reinforces the refusal to provide them with equal opportunity. The state therefore has a strong pro tanto reason to ban prenatal screening for less severe disabilities. (shrink)

Is it self-evident that every Kenyan adult citizen should have the right to vote at national and civic elections or referenda? This is not always the case: certain segments of the population are expressly or implicitly excluded by law or practice from the franchise. This paper suggests that the concept of unsoundness of mind should no longer be the basis for excluding persons with disabilities generally, and those with intellectual disabilities in particular, from voting. It (...) traces provisions in law that disenfranchise persons adjudged to be of unsound mind; and provides interpretation using national law as well as international human rights norms to infer that general or automatic disenfranchisement is a human rights violation. It concludes that Kenya’s electoral authorities must ensure that neither their policies nor the practices of their officials disenfranchise some Kenyan adults from voting by equating such persons’ mental illness or intellectual disabilities with “unsoundness of mind”. (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal (...) design put forth in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (shrink)

Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbing questions to which it (...) leads. Surely parents owe it to their children to give them the best life they can? Increasingly we are able to reduce the number of babies born with disabilities and disorders. But there is a powerful new challenge to conventional thinking about the desirability of doing so: this comes from the voices of those who have these conditions. They call into question the very definition of disability. How do we justify trying to avoid bringing people like them into being? In 2002 a deaf couple used sperm donated by a friend with hereditary deafness to have a deaf baby: they took the view that deafness is not a disability, but a difference. Starting with the issues raised by this case, Jonathan Glover examines the emotive idea of 'eugenics', and the ethics of attempting to enhance people, for non-medical reasons, by means of genetic choices. Should parents be free, not only to have children free from disabilities, but to choose, for instance, the colour of their eyes or hair? This is no longer a distant prospect, but an existing power which we cannot wish away. What impact will such interventions have, both on the individuals concerned and on society as a whole? Should we try to make general improvements to the genetic make-up of human beings? Is there a central core of human nature with which we must not interfere? This beautifully clear book is written for anyone who cares about the rights and wrongs of parents' choices for their children, anyone who is concerned about our human future. Glover handles these uncomfortable questions in a controversial but always humane and sympathetic manner. (shrink)

We highlight exclusionary practices in management research, and demonstrate through example how a more inclusive management literature can address the unique contexts of persons with disabilities, a group that is disadvantaged in society, globally. Drawing from social psychology, disability, self-employment, entrepreneurship, and vocational rehabilitation literatures, we develop and test a holistic model that demonstrates how persons with disabilities might attain meaningful work and improved self-image via self-employment, thus accessing some of the economic and social-psychological (...) benefits often unavailable to them due to organizational-employment barriers. Our longitudinal study provides evidence of the self-image value of ‘doing’ in self-employment, highlighting the potential to reduce stigma and improve generalized self-efficacy and self-esteem. Implications for self-image theory, entrepreneurship training and development, and public policy related to persons with disabilities are discussed. (shrink)

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

How do we theorize the experiences of caregivers abused by their children with autism without intensifying stigma toward disability? Eva Kittay emphasizes examples of extreme vulnerability to overturn myths of independence, but she ignores the possibility that dependents with disabilities may be vulnerable and aggressive. Instead, her work over-emphasizes caregivers' capabilities and the constancy of disabled dependents' vulnerability. I turn to Judith Butler's ethics and her conception of the self as opaque to rethink care amid conflict. Person-centered (...) planning approaches, pioneered by disability rights activists, merge Butler's analysis of opacity with Kittay's work on embodied care, while also inviting a broader network of people to both interpret needs and change communities. By expanding our conceptions of dependency, feminist disability studies can continue the aim of both Kittay and Butler: to humanize unintelligible lives. (shrink)