After ratifying the Convention on the Rights of Persons with Disabilities in 2014, Japan became the focus of an initial review designed to assess the quality of the newly implemented measures. One of the points that particularly caught the attention of UN Commissioners concerned Article 19 on independent living. This paper examines the opportunities and practicalities of independent living for people with disabilities in Japan, particularly those with intellectual disabilities (...) who are still mostly supported by their families. The notion of “independent living” and associated concepts of support emerged in the 1970s under the impetus of a group of people with multiple disabilities. After tracing this development, an overview of the living conditions of disabled people in Japan is presented, based on available statistical data, along with a brief description of the regulatory provisions and services supporting independent living. Finally, the analysis of a qualitative survey conducted people with mental disabilities experiencing independent living highlights the crucial roles of parents who are still often reluctant to their children living independently, underlining the importance of access to information. (shrink)

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

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)

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)

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)

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)

Ms. X is a person with cerebral palsy and schizophrenia. She has intractable bedsores that are a result of her immobility and to poor wound care related to her delusional thinking. Despite intensive community support, the wounds have worsened to the point that she has needed multiple hospitalizations to prevent systemic sepsis, a life‐threatening condition. She is capable of placement decisions and wishes for independence at home but is incapable of making wound care decisions and does not appreciate that (...) immediately returning home from the hospital, instead of going into a special care facility, would likely result in sepsis. The resulting dilemma about discharge planning highlights the complexity involved in weighing concerns around mental illness and capacity for treatment and placement of care. The extent of the care that is required and available in a community or health care system and the slow but relatively certain progression of the symptoms also make the decision challenging. Two commentaries take very different approaches in exploring the question whether Ms. X should be supported to go home or to a special care facility. (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 paper examines the movement for independent living among the Japanese with disabilities from the perspective of multiculturalism and human rights. The IL movement questions the conventional idea, widely held by Japanese without disabilities, that disabled people are in need of special care and cannot live independently in ordinary communities. The IL movement advocates: 1) the reinterpretation of “disability” as mere “difference”, 2) the equal right to autonomy and social participation for the disabled, and 3) the (...) unique right to care and support that enable the disabled to be autonomous. The IL movement thus projects a new “disability culture” that assigns different meanings to disability and calls for radical change in social relationships. The IL movement then is one of many forces that celebrates diversity and advocates pluralism in Japanese society in defiance of the myth of a “homogeneous monocultural” Japan. The IL movement highlights the right to care as a basic human right which is a precondition for the right to autonomy. Consequently, the IL movement reinterprets the notion of autonomy and enriches the concept of “human rights.”. (shrink)

Political theory contains two views of social care for people with intellectual disabilities. The favor view treats disability services as an undeserved gratuity, while the entitlement view sees them as a deserved right. This paper argues that David Hume is one philosophical source of the favor view; he bases political membership on a threshold level of mental capacity and shuts out anyone who falls below. Hume’s account, which excludes people with intellectual disabilities from justice owing to (...) their lack of power, but includes them in charity, is morally deficient. The shortcomings of Hume’s theory underscore the necessity of having a view of justice which ensures that people with intellectual disabilities are not marginalized. In defending the entitlement view, I integrate philosophical analysis and concrete examples of policy issues. (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)

In the UK, current policies and services for people with mental disorders, including those with intellectual disabilities (ID), presume that these men and women can, do, and should, make decisions for themselves. The new Mental Capacity Act (England and Wales) 2005 (MCA) sets this presumption into statute, and codifies how decisions relating to health and welfare should be made for those adults judged unable to make one or more such decisions autonomously. The MCA uses a procedural checklist (...) to guide this process of substitute decision-making. The personal experiences of providing direct support to seven men and women with ID living in residential care, however, showed that substitute decision-making took two forms, depending on the type of decision to be made. The first process, ‘strategic substitute decision-making’, paralleled the MCA’s legal and ethical framework, whilst the second process, ‘relational substitute decision-making’, was markedly different from these statutory procedures. In this setting, ‘relational substitute decision-making’ underpinned everyday personal and social interventions connected with residents’ daily living, and was situated within a framework of interpersonal and interdependent care relationships. The implications of these findings for residential services and the implementation of the MCA are discussed. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics CommentaryRenato Manaloto, Assistant ProfessorThe key ethical question in this case is whether it is acceptable for Dr. C to disclose information about the 16-year-old patient’s sexual and psychiatric health condition. The answer to the question is yes, if such disclosure serves the patients’ well-being and future interests.The patient, Miss M, may have had her own reasons for asking Dr. C not to inform her parents of her condition (...) — perhaps she was worried about their reaction, or believed that such disclosure was unnecessary, because she could already understand, have an opinion and make decisions for herself. In this respect, Article 12 of the United Nations Convention on the Rights of the Child provides assurance for “the child, who is capable of forming his or her own views, the right to express those views freely in all matters affecting” him or her. As a 16-year-old, Miss M plausibly senses her capacity for decision-making that is independent of her parents. Various developmental theories, such as those of Jean Piaget and Lawrence Kohlberg, affirm that her decision-making competence might have reached maturity by age 16.1 Seeing her wishes respected, Miss M may be encouraged to open up to Dr. C and receive suitable medical care or services, which may not be there if confidence in her doctor is broken. Her exercise of autonomous decision-making capacity may help in her recovery and restoration.Dependency of children on their parents is, however, arguably unavoidable as they are yet to possess capacities of decision-making equal to those of adults. Children are still, in the words of Aristotle, albeit pejorative, “incomplete adults […] unfinished human beings”, or “becomings” rather than “beings”.2 If [End Page 265] they live under the authority of their parents, they may be subject to “Constrained Parental Paternalism”. Constrained because: “It must be exercised for the good of the child and its exercise lasts only for so long as the child is incapable of making its own choices”.3Following this line of argument, parents may exercise authority over their children in ways that guide their decision-making and thereby promote their best interests. John Locke terms this “guiding the decision-making”, “informing the mind”.4 Immanuel Kant justifies “promoting the best interests of children” as: those who have brought a child into the world “incur an obligation to make the child content with his condition so far as they can”.5 “From this duty,” Kant adds, “there must necessarily arise the right of parents to manage and develop the child.” 6 Thus, parents may have not only an obligation, but also a right to guide the decision-making of their children.As persons who can understand and respond to the needs of their children, parents may be the best judges of the child’s well-being so that they may always be involved in the decision-making especially for significant decisions involving medical care the child. After all, making a medical decision can involve major life decisions. Medical choices may have long-term impact on a child’s well-being that makes parents’ involvement in such decision-making highly desirable. No amount of care by doctors for the child patient can match the invaluable insight and knowledge of the parents.In the case at hand, Miss M’s parents should be informed of her condition as they can provide her with essential support for her recovery and the restoration of her well-being. The mere fact that her parents protested about not being informed of her condition suggests that they wanted — in the sense of taking responsibility and supporting her future interests — to be involved in the medical decision-making. They believe that any harm or injury might have been prevented had they been informed. Miss M is also still under the care and custody of her parents. Not having reached the age of maturity, her parents have an obligation and a right to guide her decision-making.Nevertheless, in some countries, children between 13 and 16 years of age have the right to make medical decisions without parental involvement. In Singapore, parents’ participation in the medical care of... (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)

In our country, mildly mentally disabled students are being educated in general education classes by means of integration. An individualized education program (IEP) is being prepared for these students when needed. However, the impact of BEP on students with intellectual disabilities in religious education has not yet been sufficiently discussed. The purpose of this research is to examine the impact of the IEP on the achievement of religious education of mentally disabled students and the level of religious learning (...) of these students. For this purpose, in addition to the education given in the general education class for the 6 mildly mentally disabled integration students studying in the 4th grade of primary school, 2 hours of education were carried out in the support education room per week during the education and training year. Semi-experimental study was designed according to the single-tasked multiple-start model. Education process was evaluated by Achievement Test, the Teacher Observation Form, the pre-test based on the Self-Assessment Form, post-test and retention tests. As a result, it has been seen that BEP has a positive effect on the achievement of religious education of mentally disabled students (ZEKÖ). In this framework, it has been found that students are influenced by the society, especially by their peers, when they are given time they constitute religious knowledge, they understand normal individuals religious behaviours, they are more emotional, they forget religious information that is not used in everyday life and when they accomplish they increase self-confidence and self-esteem and internalize values.SummaryPeople differ in their creation. This difference is greater in people disabled. In terms of individual traits and educational qualifications, individuals with disabilities who are severely different from their peers and who have difficulty in playing the roles they should play are evaluated in several groups. One of these groups is mentally disabled. Mentally handicapped people have various rights as normal individuals. One of these rights is the right to education. National and international laws guarantee the educational rights of individuals with intellectual disabilities. Similarly, Islam and his best practitioner, the prophet Muhammad, did not consent to the transformation of the mentally disabled into begging masses or to their isolation, but rather to integrate them into society. According to Islam, individuals with intellectual disabilities have the “capacity to acquire rights“, even if they do not have "capacity to act". This right requires them to receive an education that takes into account their differences, just like normal individuals. Because of their learning characteristics, mentally retarded students differ from their peers, therefore they cannot benefit from the educational activities organized for normal students. So, these students need a special education to ensure that the mentally disabled are successful and live in society without being dependent.Inrecent years, in our country as well as in the world, the principle of "least restricted education environment" is taken into consideration for mentally handicapped people who need special education, which approaches to co-education with their peers. This approach is tried to-be applied at all educational levels. Due to the diagnosis and evaluation in the Guidance and Research Center, a large number of mentally retarded students are placed in normal schools. These students, like other courses, take the Religious Culture and Moral Knowledge Course together with the normal students. However, depending on their learning, they have the right to receive separate training as 1-3 people at-the support training room. The instructional adaptations necessary for the education of these students made by the Guidance and Research Centers are carried out by the teacher who plays the basic role in the education of the students. One of the important elements in the education of these mentally retarded students who need special education is the individualized education program. This program is prepared by the cooperation and joint decision of all stakeholders who may contribute to student’s education. The status of the student to participate in the learning and teaching activities, the amount and the quality of the education to be received in the support education room are made within the framework of this program.One of the most important courses in the education of mentally retarded students who are educated by inclusion is the Religion Culture and Moral Knowledge course. Because this course has the potential to make serious contributions to the socialization of students and to maintain their lives independently. However, there are a limited number of studies investigating the quality of religious education at-the scientific level. Furthermore, it has not been observed that these studies have been quasi-experimental. This study aims to reveal the quality of education for the mentally handicapped students. For this purpose, it aims to determine the contribution of religious education in the support education room to the success of the student depending on the individualized education program. It also makes it possible to make conclusions about how mentally handicapped people use their mental skills to learn religion. Depending on the aim of the study, during the 2015-2016 academic year, primary school 4th grade students and 6 mentally disabled inclusion students were educated. The quasi-experimental study was designed according to the single-subject multiple-start model. The process of the education, in other words, the development of mentally retarded students towards religious learning; were evaluated by Success Test, Teacher Observation Form and Self-Assessment Form based on pre-test, post-test and retention tests.Findings of the study; Faith, worship, the prophet Muhammad, Qur’an and its commentary, are classified according to the fields of morality, religion, and culture. The post-test achievement scores of the students in all learning areas were higher than the pre-test achievement scores. This shows that religious education in the support training room based on individualized education plan contributes positively to the success of the student. The results of the retention test are close to the results of the final test. In addition, it was determined that the students were affected by the society, especially by their peers, structured the religious knowledge when given time, they understood the religious behaviors of the normal individuals, became more emotional, forgot the religious information that is not used in daily life, increased their self-confidence and self-esteem as they succeeded and internalized the values. Based on these results, the following recommendations have been developed.Support Education Rooms should be functionalized and special attention should be given to individual or group-based religious education based on the nature and objectives of the subject in these rooms.In religious education, by taking into account the performances of mentally retarded inclusion students (MHIS), the relevant dimension of religion should be given importance according to their contribution to their normal lives and they should be consistent and patient in this process.Since MHIS has different levels of learning and perception and different developmental characteristics at every stage of life, it should prioritize their proper use of their existing capacities based on their religious education, interests and curiosities.Since MHIS is influenced by the emotion dimension rather than the information dimension of religion, religious education for them should be oriented towards life, which is not academic, literal or doctrinal, but rather their life and feelings.Similar studies with different study group students must be done and the results of the study should be interpreted comparatively. 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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)

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)

This study investigated the effects of music therapy and pictorial illustration on the attention span of children with mild intellectual difficulties. A pre-test, post-test and control group quasi-experimental research design was used with a sample of children diagnosed with mild intellectual disability from three special schools in Ibadan, Nigeria. Fifty children were randomly selected and assigned to one of three groups: music therapy, pictorial illustration, or control. Twenty-four sessions of music therapy and pictorial illustration classes (...) were held with the experimental group only. The Moss Attention Rating Scale was used before and after the intervention to collect data on participants’ attention span. Analysis of Covariance indicated that there was a significant statistical difference between pre-test and post-test results of the two groups. The estimated marginal means of post-attention span by treatment indicated that pictorial illustration had the highest post-attention span score, followed by music therapy, while post-attention span score for the control group was the least. Based on the findings, it is recommended that teachers, caregivers, and parents of children with mild intellectual disability adopt pictorial illustration and music therapy as teaching strategies to enhance their attention span. (shrink)

The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley’s rights, including a right to an intact, unaltered body, or on Ashley’s parents’ rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. (...) We argue, however, that caregiving is a central issue in the controversy, as Ashley’s need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called “holding.” We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family’s contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family “holding” for Ashley. (shrink)

The COVID-19 pandemic has precipitated profound global transformations, and in the Philippines, Emergency Remote Learning (ERT) emerged as a vital response to address the educational needs of students during this crisis. While existing research has extensively examined the challenges faced by parents during ERT, limited attention was devoted to understanding the unique experiences of parents of children with intellectual disabilities (ID) and hearing impairments (HI). Using a qualitative descriptive case study within interpretative paradigm, this study aims to fill (...) this gap by exploring the challenges encountered and coping strategies employed by 15 parents in the Philippines who have children with ID and HI. Findings illuminate the multifaceted challenges faced by parents, encompassing their roles as caregivers and facilitators of their children’s education. Moreover, it reveals the support mechanisms available to these parents, while also highlighting the pressing need for additional assistance to better meet the complex needs of these children. The research also identifies the most effective strategies employed by parents to navigate the challenges of remote learning. The results serve as a critical resource for parents, educators, and policymakers, providing a roadmap for enhancing the support system for families with children who have ID and HI, particularly during times of crisis. (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)

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)

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

Photo ID 279661800 © Sidewaypics|Dreamstime.com ABSTRACT Decolonization is complex, vast, and the subject of an ongoing academic debate. While the many efforts to decolonize or dismantle the vestiges of colonialism that remain are laudable, they can also reinforce what they seek to end. For decolonization to be impactful, it must be done with epistemic and cultural humility, requiring decolonial scholars, project leaders, and well-meaning people to be more sensitive to those impacted by colonization and not regularly included in the (...) discourse. INTRODUCTION Decolonization is complex. To successfully achieve decolonization, projects should incorporate the voices of those subjugated or silenced. Including such voices requires sincerely exploring who has been affected by colonialism or neocolonialism and how, as well as cultural sensitivity. In its basic use, decolonization refers to countries under colonial rule gaining independence or freedom from forms of subjugation. Additionally, scholars use the term to refer to efforts to dismantle neocolonialism and vestiges of colonialism. The process includes de-silencing subjugated voices.[1] I use decolonization in the latter way to refer to countries with technical independence. While arguably colonization ended formally with independence from colonizing powers, neocolonialism is the indirect, informal, and sometimes subtle control of the people, their economy, and political life despite formal independence from colonizing authorities. I conceptualize neocolonialism as a system that involves direct and involuntary control of another’s political, economic, or social life, impacting their worldview and ways of encountering the world. Decolonization may target actions, places, or systems like health care or AI to overcome the ills of colonialism and neocolonialism. It also may target knowledge and require rethinking how people develop their knowledge base. For example, if people grew up seeing an outside colonizer as superior, they would need to change their knowledge of superiority. Decolonization may target power, for example, changing who owns and distributes COVID-19 vaccines and who distributors exclude in the distribution of vaccines. Decolonization could require looking at those disempowered in the distribution process. Additionally, decolonization may target autonomy of persons by freeing people, ensuring human and individual rights, and respecting cultural traditions. Decolonization projects that try to de-silence by including the voices of those affected by colonialism and neocolonialism must examine inclusiveness in the context of the culture of the subrogated individuals. Examples of decolonization projects include making datasets inclusive of diverse peoples and places, returning to traditional food and eating practices, making sure hospitals in developing countries are led by locals and respectful of cultural traditions, returning unethically obtained artefacts or objects. Another project would be laying the groundwork for equality in formerly colonized countries to ensure that business ownership, education, and financial success will flow fairly to those previously victimized by colonization. Summarily, there are many strategies for decolonizing. However, it is worth asking whether the strategies have risks that undermine the goal of decolonization. I. Understanding Decolonization Discourses Many fields, from AI to politics, economics, health care, aviation, and academia, discuss decolonization. The content of the discourse on decolonization depends on the region and field discussing it. Rather than just reporting on decolonization, the discussions may be calls to action. For example, decolonization discourses reflect activism for cognitive justice, such as equal consideration of Indian or African knowledge systems in global health discourses.[2] In politics and political science, some scholars frame decolonization as an anti-western, anti-colonial movement by Africans to emancipate Africa/ns from subjugation or shift the continent to postcolonialism and post-neo-colonialism. This framing walls off non-African participants and may undermine their capacity to benefit the conversation.[3] There are other political scientists who actively support decolonization and see it as a field of activism in support of anyone and countries where colonization harmed people and development.[4] The point is that two ways of conceptualizing decolonization in politics and political science are discernible. One conceptualization is less inclusive since it alienates scholars and professionals from Western, high-income, or developed countries. The other is more inclusive. In humanitarian studies, including philosophy, some decolonization articles and conversations are efforts to end the destructive force of colonization. They focus on either the form, such as ecocide, genocide, and many others, or the geographic location, such as Africa, Asia, Latin America, and Oceania.[5] Finally, the feelings one brings into this conversation can adversely impact how one engages in them and who they listen to or are willing to hear from. For example, anger, rage, bitterness, and hatred are emotions that are not uncommon in spaces of decolonization conversations. Decolonization conversations that originate from a place of negativity risk deepening the psychological state of victimhood and prevent people from disrupting constructively or critically engaging in the conversation.[6] II. Understanding Decolonization Strategies Decolonization strategies mainly aim to de-silence victims of domination or subjugation. People have proposed many strategies for decolonizing. These strategies may be informed by what the target is for decolonization. Decolonization can target power relations in global health. For example, during the COVID-19 pandemic, public health organizations noted the power imbalance in vaccine distribution. Decolonization could involve de-silencing those affected by neocolonialism to bring about a more balanced distribution of power and a more fair distribution of the vaccine. By analyzing who was adversely impacted by the distribution and who ought to wield power, those engaged in decolonizing advocated for positive change and equitable power relations. Equally, when being is the target of decolonization, the language of unlearning or relearning and mental decolonization take centre stage in the decolonization discourse. For example, the quest to decolonize colonized minds aims to demythologize African inferiority and Western superiority. Demythologizing African inferiority enables those engaged in the decolonization discourse to cultivate and foster African agency.[7] Finally, when knowledge production is the target of decolonization, scholars use inclusion and cognitive justice. For example, they try to alter the knowledge that underlies global health ethics.[8] “[D]decolonizing researchers aim to respectfully understand and integrate theory from Other(ed) perspectives, while also critically examining the underlying assumptions that inform their Western research framework.”[9] One common strategy that scholars use in decolonization is inclusion. It is worth asking, does including people who have been subrogated foster decolonization? Whether that is effective depends on whether included people are more heard or whether the strategies to include them create new forms of silencing. III. Inclusion and the Quest to Decolonize Evaluating how effective inclusion is in the quest to de-silence subjugated voices is important. First, inclusive strategies are not neutral. They are epistemically situated. This situatedness constrains meaning-making in different ways: how and what questions are asked, how social roles are constructed, organized or assigned, and who is admitted to the room where these conversations occur.[10] Inclusion strategies may reinforce (unchallenged) assumptions. For example, to address prejudices and stereotypes in global health images, Arsenii Alenichev and his colleagues[11] successfully inverted “one stereotypical global health image” by prompting a generative AI to produce “an image of a traditional Indian or African healer healing a White Child.” Although there were some problems with the image of the White child, this innovation is a significant, useful effort to de-embed or strip global health images of problematic pictures that mythologize White superiority and Black inferiority. Yet it is possible that using categories like traditional Indian or African reinforces unchallenged assumptions, raising key questions regarding how language and words create new stereotypes. It is common to define traditional as non-conventional, unorthodox, and informal. Yet studies continue to reveal that non-scientifically appraised healing approaches in India or Africa are not only effective but also real, meaningful, fundamental, and primary care-seeking behaviours in many communities in these regions.[12] Suppose inclusive strategies are not un-situated. These conversations may be had within the structures, language, and spaces built by or connected to colonialism. The spaces, language, places, and structures in which these conversations occur can limit who can participate and how they participate. Importantly, some conditions are not conducive to participation as equals. The allocated time for the discussion could also constrain how individuals express themselves. It is unclear who is ultimately heard. Furthermore, epistemic situatedness of inclusion can impact decolonization conversations when participants are beneficiaries of, products of, and trained by structures and systems they seek to dismantle. To enhance the decolonization project and its goals, a pressing task is to unveil and question how the circumstances may inhibit activism. If the vestiges of colonialism continue to structure the decolonization discourse invisibly, the vestiges may undermine decolonization. For example, a public health discussion that includes white Western doctors and Western pharmaceutical executives in Africa may have many local Africans at the table but could still effectively devalue their input based on built-in assumptions and biases that are vestiges of colonialism. Second, exclusion and inclusion are also not binary. Individuals may experience exclusion, even while included (the phenomenon called internal exclusion). In other words, inclusion can fail to be substantial or become a means of enhancing optics, “a way of (un)consciously weakening the radical claims being pursued.”[13] For example, in South Africa, many institutions have made significant efforts to diversify their faculties due to the promulgation of the Employment Equity Act 55.[14] The act requires South African institutions to implement employment equity that redresses the history of harmful discrimination in the country. The act further requires transforming departments and institutional administrations. Although many recognize and support the need to transform departments in South Africa, the rhetoric of transformation departs sharply from the lived experiences.[15] This misalignment between the plan and practice is evident in the underrepresentation of black people and females in senior management teams, professorships in many universities and health departments, and positions of power in some South African institutions. Those selected in the transformation of the departments have also complained of being overworked. The burden of extra work undermines their ability to develop agency and voice in the space they now occupy or fulfil key requirements that have implications for their career trajectory.[16] This is called the minority tax. Notably, "the minority tax… is the burden of extra responsibilities [placed] on faculty of colour to achieve diversity and inclusion and contributes to attrition and impedes academic promotion."[17] One challenge for decolonializing projects will be for decolonial scholars and those selected for decolonization objectives to have the humility to decline invitations, requests, roles, and platforms for which they are either unqualified or lack the capacity to fulfil. At its heart, decolonization strategies must empower those included rather than weaken them. Finally, inclusion can lead to a phenomenon known as elite capture.[18] Elite capture occurs when socially advantaged individuals in a group monopolize or exploit activism to their own benefit at the expense of the larger, struggling group. Elite capture weakens decolonization efforts from within, revealing that those likely to benefit from global inclusive efforts are those who fulfil globally constructed standards, those “already present in the room.” There is no better strategy to weaken decolonial movements than weakening the project from within by strategically positioning individuals who share physical properties with the victims of exclusion and silencing but intellectually, behaviourally, psychologically, and emotionally share more common ground with the colonizer. Such insiders may be unaware they are furthering neocolonial conditions rather than decolonizing. In relation to decolonization, particularly in global health, elite capture reveals that those whose voices are loudest in the room are not necessarily those more impacted by colonialism. They may benefit more from reinforcing colonialism. Opportunism weakens meaningful activism from within, preventing good initiatives and strategies from having their intended impact or taking substantive root.[19] This paper cannot do justice to elite capture, but it is worth noting its negative impacts. IV. Improving the Impact of Decolonization To end neo-colonialism, it is important to understand how it manifests and what to do at each level. Beyond the academic discourse, many tangible efforts exist to decolonize through de-silencing. Examples of these efforts include the ME2 movement that seeks to centre the concerns and experiences of sexually abused or harassed victims in the public discourse. At the funding level, many grant-awarding agencies like Wellcome Trust have dedicated huge budgets to studies that help them understand how they may have perpetrated colonialism or neocolonialism and what they can do differently going forward.[20] In South Africa, promulgating the Employment Equity Act 55 was a tangible attempt to entrench decolonization concerns in a country's regulatory framework. Yet, these decolonization efforts could fail to be substantive if they do not reflect cultural sensitivity. Two key components of cultural sensitivity are worth highlighting here: epistemic and cultural humility. Epistemic humility is an intellectual virtue described as knowing one’s limitations and the limitations of the learning methods employed. At its simplest, it is the ability to admit when one is wrong. Cultural humility includes genuine attempts to learn about and embrace other cultures. Epistemic and cultural humility are signs of academic excellence and strength. Epistemic and cultural humility seriously acknowledge how the state of our knowledge, cognitive limitations, experiences, and backgrounds, while constraining us, also invite us to listen, learn, grow, and change. The limitations-owing account of epistemic and cultural humility suggests that “a person who is aware of her cognitive limitations and owns them is much better positioned to achieve such epistemic goods as true beliefs and understanding than someone who… simply has insight into the epistemic status of her beliefs.”[21] Epistemic and cultural humility may help prevent decolonization projects that unintentionally reinforce what they seek to dismantle. Epistemic humility calls on decolonizers to defer tasks for which they are not qualified to suitably qualified persons. Beyond this, humility supports brave scholarship that imagines and reimagines how featuring the same voices, faces, and perspectives possibly introduces new forms of domination or silencing. Cultural knowledge can lead to a more intentional way of seeking out the right people or a more diverse group than those frequently featured in decolonization conversations. This would give others more opportunities to navigate these spaces and should do so in ways that are familiar to them. One ought to be more sensitive to those who would ordinarily not be included in these conversations. Unless we radically and boldly reimagine these discussions, we risk alienating those most negatively impacted by neocolonialism. CONCLUSION Decolonization conversations are complex and the subject of academic debate. The strategies employed to decolonize can harm or help the victims of neo-colonialism. Inclusion of previously silenced individuals may not be enough to overcome the vestiges of colonialism, leading to a false inclusion, where those included feel excluded or contribute in ways reflecting their own biases and circumstances. Inclusion of an elite or people who do not truly represent the subjugated can lead to elite capture. For decolonization strategies to be impactful, for example, in the context of global health, project leaders and participants must engage in conversations employing epistemic and cultural humility. In many ways, epistemic and cultural humility can help us demythologize our assumptions of any cultural superiority or cognitive authority, allowing for diverse voices, cultures, and perspectives to emerge without domination. - [1] Caesar Atuire & Olivia Rutazibwa. 2021. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization [Online]. Available from: https://law.yale.edu/yls-today/news/african-reading-covid-19-pandemic-and-stakes-decolonization [Accessed July 29, 2021 2021]. [2] Bridget Pratt & Jantina De Vries 2023. Where is knowledge from the Global South? An account of epistemic justice for a global bioethics. Journal of Medical Ethics, medethics-2022-108291. [3] Anye-Nkwenti Nyamnjoh 2023. Is decolonisation Africanisation? The politics of belonging in the truly African university. Social Dynamics, 1-20. [4] Rianna Oelofsen 2015. Decolonisation of the African mind and intellectual landscape. Phronimon, 16, 130-146. [5] Caesar Atuire & Olivia Rutazibwa. 2021. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization [Online]. Available from: https://law.yale.edu/yls-today/news/african-reading-covid-19-pandemic-and-stakes-decolonization [Accessed July 29, 2021 2021]. [6] Pedro Alexis Tabensky 2008. The Postcolonial Heart of African Philosophy. South African Journal of Philosophy, 27, 285-295. [7] Nicholas M. Creary 2012. African Intellectuals and Decolonization, Ohio, Ohio University Press. [8] Bridget Pratt & Jantina De Vries 2023. Where is knowledge from the Global South? An account of epistemic justice for a global bioethics. Journal of Medical Ethics, medethics-2022-108291. [9] Vivetha Thambinathan & Elizabeth Anne Kinsella 2021. Decolonizing Methodologies in Qualitative Research: Creating Spaces for Transformative Praxis. International Journal of Qualitative Methods, 20, 16094069211014766. [10] Abimbola Seye 2023. Knowledge from the global South is in the global South. Journal of Medical Ethics, 49, 337. [11] A. Alenichev, P. Kingori & K. P. Grietens 2023. Reflections before the storm: the AI reproduction of biased imagery in global health visuals. Lancet Glob Health. [12] Jonathan K. Burns & Andrew Tomita 2015. Traditional and religious healers in the pathway to care for people with mental disorders in Africa: a systematic review and meta-analysis. Social Psychiatry and Psychiatric Epidemiology, 50, 867-877. [13] Anye-Nkwenti Nyamnjoh & Cornelius Ewuoso 2023. What type of inclusion does epistemic injustice require? Journal of Medical Ethics, jme-2023-109091. [14] 1998. Employment Equity Act. In: GOVERNMENT, S. A. (ed.) 19370. [15] Dina Zoe Belluigi & Gladman Thondhlana 2019. ‘Why mouth all the pieties?’ Black and women academics’ revelations about discourses of ‘transformation’ at an historically white South African university. Higher Education, 78, 947-963. [16] Juliet Ramohai & Khomotso Marumo 2016. Women in Senior Positions in South African Higher Education: A Reflection on Voice and Agency. 231, 135-157. [17] J. Trejo 2020. The burden of service for faculty of color to achieve diversity and inclusion: the minority tax. Mol Biol Cell, 31, 2752-2754. [18] Olufemi Taiwo 2020. Being-in-the-Room Privilege: Elite Capture and Epistemic Deference. The Philosopher, 108, 7. [19] Margarita Kurbatova & Elena Kagan 2016. Opportunism of University Lecturers As a Way to Adaptate the External Control Activities Strengthening. Journal of Institutional Studies, 8, 116-136. [20] Jeremy Farrar. 2022. An update on Wellcome's anti-racist programme. An update on Wellcome's anti-racist programme [Online]. Available from: https://wellcome.org/news/update-wellcomes-anti-racism-programme [Accessed August 10, 2022 2022]. [21] Katherine Dormandy 2018. Does Epistemic Humility Threaten Religious Beliefs? Journal of Psychology and Theology, 46, 292-304. (shrink)

This paper provides various perspectives of scholars on inclusive education throughout its history and the role of an inclusive teacher in inclusive education schools with specific focus on children with disabilities that attend regular classes with their non-disabled peers. The paper is based on the literature review of various research papers and studies that were published by prominent and specialized scholars, institutions and relevant organizations in the field of inclusive education, with a focus on disabled children (...) and their rights to have equal chances for education in regular schools with their peers. The paper further reflects teachers experience and perception on the inclusive education process and the challenges they face in this regard. Finally, the paper provides various views on what is expected by an inclusive teacher and what type of support and assistance they need to get from other educators and teachers specialized in education of children with disabilities in order to meet children’s needs in the context. The paper also describes the importance of inclusive teacher’s collaboration with the school management, children’s parents and caregivers and other relevant specialists in order to understand the specific background of child’s type of disability with the aim of adapting his teaching methodology, tools and materials as per child’s specific needs for an individualized education planning if needed. (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)

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)

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)

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)

L’article analyse l'implication des collectifs de personnes handicapées et des organisations connexes dans le processus d’élaboration des politiques du handicap au Japon et envisage de nouvelles formes de collaborations pour résoudre les problèmes politiques à venir, en s’appuyant sur l’étude des mouvements sociaux, des interactions stratégiques et de l’action collective coopérative. Il montre, dans un premier temps, comment la question de la dépendance persistante des personnes handicapées vis-à-vis des institutions résidentielles et des membres de leur famille s’est imposée comme un (...) problème fondamental de la politique japonaise du handicap, à la suite de la tragédie de Tsukui Yamayuri-en en 2016. Il retrace ensuite les grandes lignes de la politique japonaise du handicap depuis les années 1960 afin de bien saisir l’origine du problème en relation avec les mouvements des personnes handicapées et de leur famille. Deux exemples de coopération avec des collectifs de personnes handicapées et des organisations affiliées, qui ont eu lieu dans les années 2010, au moment de la ratification de la CDPH, sont présentés. Enfin, des pistes de collaboration plus étroite entre les collectifs de personnes handicapées et les organisations apparentées, en particulier les organisations de parents/familles, sont proposées en vue de favoriser l’émancipation des personnes handicapées vis-à-vis des institutions et de libérer les familles des responsabilités de leur prise en charge. (shrink)

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. (...) In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Adults with ASD: Lessons for Researchers and CliniciansCassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. WarrenRecent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services (...) in the United States for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a).For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.Grief and Joy: Opposite Sides of the Same Parenting CoinThe idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote:Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills.Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path.People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a... (shrink)

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

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)

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse off, apart from a (...) non-accommodating environment; (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled (...) patients may also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

As reports of genocide, terrorism, and political violence fill today’s newscasts, more attention has been given to issues of human rights—but all too often the sound bites seem overly simplistic. Many Westerners presume that non-Western peoples yearn for democratic rights, while liberal values of toleration give way to xenophobia. This book shows that the identification of rights with contemporary liberal democracy is inaccurate and questions the assumptions of many politicians and scholars that rights are self-evident (...) in all circumstances and will overcome any conflicts of thought or interest. _Rethinking Rights_ offers a radical reconsideration of the origins, nature, and role of rights in public life, interweaving perspectives of leading scholars in history, political science, philosophy, and law to emphasize rights as a natural outgrowth of a social understanding of human nature and dignity. The authors argue that every person comes to consciousness in a historical and cultural milieu that must be taken into account in understanding human rights, and they describe the omnipresence of concrete, practical rights in their historical, political, and philosophical contexts. By rooting our understanding of rights in both history and the order of existence, they show that it is possible to understand rights as essential to our lives as social beings but also open to refinement within communities. An initial group of essays retraces the origins and historical development of rights in the West, assessing the influence of such thinkers as Locke, Burke, and the authors of the Declaration of Independence to clarify the experience of rights within the Western tradition. A second group addresses the need to rethink our understanding of the nature of existence if we are to understand rights and their place in any decent life, examining the ontological basis of rights, the influence of custom on rights, the social nature of the human person, and the importance of institutional rights. Steering a middle course between radical individualist and extreme egalitarian views, _Rethinking Rights_ proposes a new philosophy of rights appropriate to today’s world, showing that rights need to be rethought in a manner that brings them back into accord with human nature and experience so that they may again truly serve the human good. By engaging both the history of rights in the West and the multicultural challenge of rights in an international context, _Rethinking Rights_ offers a provocative and coherent new argument to advance the field of rights studies. (shrink)

As a disabled activist, I much prefer Aristotle's concept of ‘eu zen’, or ‘living well’ to that of ‘well-being’. ‘Eu zen’ is part of Aristotle's treatise on ‘eudaimonia’, which Grayling describes as: ‘…. a strong and satisfying sense of well-being and well-doing, of flourishing as only a rational and feeling human individual can flourish when his life and relationships are good’ (emphasis added). Aristotle's concepts are preferable because they promote ‘well-being’ through familial, social and civic activity, whilst recognising that (...) such activity requires resources, both human and material. These concepts are akin to those advocated by disabled people within the ‘independent living movement’; i.e. that the individual's ‘choice’, ‘control’, ‘dignity’ and ‘freedom’, over their lives and lifestyles, are supported by an inclusive community. However, both sets of principles are now being undermined by neoliberal managerial social work practice, which not only deny basic human rights which underpin ‘eu zen’, but lead to fear and a sense of ‘commodification’ or de-personalisation among disabled recipients. Relevant examples will come from experience, both personal as well as that from other disabled people. (shrink)

The aim of this study was to conduct an interpretative phenomenological analysis exploring the experiences of differently abled first-year students from a psychofortological perspective. Ryff’s psychological well-being model was used as a theoretical underpinning. Through the course of an academic year, three male participants completed semi-structured interviews and reflective writing exercises. Data were analysed using interpretative phenomenological analysis. A cross-case analysis yielded themes related to participants’ dynamic processes of finding purpose, direction and independence, as well as belonging, positive relations, self-acceptance (...) and mastery. Collectively, the findings demonstrated how the participants moved from viewing themselves as disabled to differently abled, and that, despite numerous challenges, psychological well-being can be facilitated through the first-year higher education experience. (shrink)

As a subject for philosophizing about education, there are few topics as rich and significant as the role of public schools in fostering respect for sexual and religious diversity. The liberal state, it is said, has a clear mission to teach students to respect the rights of others to lead fundamentally different ways of life, and to provide students with the tools needed to make similarly fundamental choices about their own lives. The liberal state must do this, however, (...) without undue or excessive infringement on the rights of children and parents who believe that some common ways of life are, writ large, morally objectionable. This symposium paper features three arguments, each formulated by a different student in education or a related field. The first argues that LGBTQ role models must be provided in schools (through school resources or in person). The second argues that teachers are being placed in a very difficult position when such provision causes controversy with the surrounding community. The third argues that parents must not be given unchecked power over their children’s exposure to LGBTQ role modeling. (shrink)

The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that were put in (...) place to protect the rights and well-being of participants are described, and it is argued that the approaches used in this study met the requirements set out in the Mental Capacity Act 2005. Although this paper is based on research involving people with intellectual disabilities, it has implications for research involving other groups who may also lack capacity to consent, including people with mental health problems, head injuries and dementia. (shrink)

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

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)

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

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)

Although almost completely ignored, Aquinas’s account of persons with severe intellectual disabilities is key to his understanding of human persons and their salvation. Aquinas extensively addresses questions of human impairment, and for Aquinas physical and mental impairment are not nearly as important as moral or spiritual impairment. Contrary to those who focus on Aquinas’s account of rationality and suppose he thinks that a person must exercise rationality in order to be moral and in the image of (...) God, Aquinas’s view is that persons with severe mental impairments have a distinct spiritual advantage, due to the impeccability of the gift of wisdom given them in their baptism. (shrink)