People with cognitive disabilities are equal citizens, and law ought to show respect for them as full equals. To do so, law must provide such people with equal entitlements to medical care, housing, and other economic needs. But law must also go further, providing people with disabilities truly equal access to education, even when that is costly and involves considerable change in current methods of instruction. The central theme of this essay is (...) what is required in order to give such people political and civil rights on a basis of genuine equality. (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)

ContextPeople with mental disorders can acquire long-term disabilities, which could impair their functioning and quality of life (QoL), requiring permanent care and social support. Systematic data on QoL and functioning, which could support a better management of these people, were not available.ObjectiveTo analyze the QoL, level of functioning and their association with sociodemographic and clinical factors of people with mental disorders who underwent deinstitutionalization using assisted living facilities.MethodsA Cross-sectional study was conducted between (...) July 2018 and July 2019, through interviews using the World Health Organization Quality of Life (WHOQOL-BREF) to determine the QoL scores, and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) to determine the level of functioning. All adults (≥18 years old) with mental disorders, who underwent deinstitutionalization, users of assisted living facilities and assisted by the Psychosocial Assistance Centers III, in a city in the state of São Paulo, Brazil, were selected. For statistical analysis of the associated factors, Student’st-test was used for dichotomous variables and ANOVA for polynomial variables. Pearson correlation coefficient was used to measure the association between QoL and functioning scores.ResultsOut of 359 people who underwent deinstitutionalization with mental disorders, 147 met the eligibility criteria. The mean total score for the WHOQOL-BREF was 66.5 ± 13.4 and the mean score for WHODAS 2.0 was 10.4 ± 7.6. An association was found between people who were studying (n= 65.8; 95%CI, 63.5–68.1vs. n= 73.9; 95%CI, 67.5–80.3;p= 0.04) and better WHOQOL-BREF QoL scores or WHODAS 2.0 levels of functioning (n= 10.9; 95%CI, 9.6–12.2vs. n= 5.1; 95%CI, 2.5–7.7;p= 0.01). A weak negative correlation (r= 0.41) emerged between higher QoL scores and functioning improvement.ConclusionThis study indicates that the QoL of the sample is associated by their functioning levels, which, in turn, may reflect on their social interactions. Public policies that favor interventions increasing socialization of this population can result in better health outcomes. The QoL and functioning scores provide valuable insights to develop public policies more suited to this population profile. (shrink)

Mild and moderate mental illnesses can hinder labor force participation, lead to work interruptions, and hamper earning potential. Targeted interventions have proven effective at addressing these problems. But their potential depends on labor protections that enable people to take advantage of these interventions while keeping jobs and income.

People with disabilities face inequalities in mental wellbeing, for which social exclusion is a contributing factor. Musical activities offer a promising but complex intervention, making impacts on a population with highly varied characteristics and needs challenging to capture. This paper reports on a mixed methods, person-centered study investigating a community music intervention for such a population. Three groups of adult service users with varied disabilities, took part in weekly music workshops in different locations. (...) Music staff, housing and resource center staff, as well as participants and members of their families, took part in semi-structured interviews. A quantitative measure administered by service staff was used to rate service users’ social development. Two lay researchers, both individuals with a disability contributed to all aspects of the study. Interviews were analyzed through thematic analysis. Improvements in individuals’ self-expression, confidence, mood, and social skills were consistent with previous findings. Differences in effect between centers included: Group 1, some of whom had previous experience of workshops, showed an improvement in musical skills; Group 2 showed a mixed response, some participated with enthusiasm but others chose art activities over music workshops; Group 3 had lasting positive impact, this group had very limited opportunities for music due to their rural location. Quantitative analysis showed significant increase over all groups in communication, interaction with others, and joint attention. The intervention was beneficial for participants in separate locations in similar ways, but also highlighted that context and prior experience mediated effects in distinct ways. The lay researchers enhanced the qualitative analysis by emphasizing the importance of recognizing participants’ self-expression in non-verbal modes of communication and the importance of having music staff with a disability to provide a positive role model. This paper proposes that mixed methods person-centered research is the most suitable approach to capture and understand the multiple and varied effects of this complex intervention for a diverse group of participants. (shrink)

Theories of distributive justice are often criticised for either excluding people with disabilities from the domain of justice altogether, or casting them as deficient in personal attributes. I argue that the capabilities approach to justice is largely immune to these flaws. It has the conceptual resources to locate most of the causes of disadvantage in the interaction between a person and her environment and in doing so can characterise the disadvantages of disability in a way that avoids (...) the imputation of natural deficiency. However, I also argue that the capabilities approach cannot accommodate some of the stronger claims advanced by some disability scholars. No plausible capabilities approach can guarantee that social change will always be the just or fair remedy for disadvantage, and there is a small number of severe cases of disability where capability shortfalls will be attributed to the person’s ‘deficient’ physical and mental impairments. (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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Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we (...) address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (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)

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)

This paper explores the implications that arise when those of us with experiences of distress/mental health system encounters deploy lived experience as expertise to produce research. In recent years, some mental health service and research systems have conceded to disability rights demands of ‘nothing about us without us,’ and slowly, select people with direct contact with psychiatric systems and experiences of distress have been incorporated as experts by experience into mental health assemblages. In (...) my own professional encounters, I have largely benefited from these inclusive, participatory, and diversity-oriented best practices: using my experiences of distress, psychiatric encounters... (shrink)

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

Shared Musical Lives makes the case for the epistemological and ethical significance of musical experience. Music can be a source of self-knowledge and self-expression, and hence reveal important dimensions of the self to others. This knowledge - of both self and of others - has a moral force as well. Shared musical experience can transform and establish new modes of being with others, cultivate virtues, and expand the moral imagination. The term sonification (which means translating data into non-verbal audible (...) tones) provides an organizing principle for the arguments in the book.Transposing the concept into a philosophical key, this book explores two forms of sonification: first, the process by which musical experience reveals dimensions of the self and relationships with others; and second, philosophical sonification, or the critical examination of philosophical concepts,arguments, and theories in view of what musical experience reveals. These two kinds of sonification are discussed specifically in the context of disability. In this book, author Licia Carlson brings the musical lives of people with cognitive and intellectual disabilities into the foreground in order to challenge and broaden existing conceptions of disability and music and provide new ways of thinking about the philosophies of music and disability. (shrink)

This paper discusses the issues of deciding to have a child with mental retardation, and of terminating a pregnancy when the future child is known to have the same disability. I discuss these problems by criticizing a utilitarian argument, namely, that one should act in a way that results in less suffering and less limited opportunity in the world. My argument is that future parents ought to assume a strong responsibility towards the well-being of their prospective children when (...) they decide to reproduce. The moral point in cases in which our acts affect the well-being of future children should be expressed strictly in terms of parents' culpability. Future children thus do not have current moral standing but presently living persons have current obligations to consider the presumable effects of their actions on future people. I will also argue that there are morally significant differences between 'selective contraception' and selective abortion. (shrink)

This paper explores the role of friendship in the lives of people with psychiatric disabilities through the use of narrative. We suggest that the use of phenomenologically based investigation in experimental or other traditional research designs provides a more in-depth and complex view of the lives of people with serious mental illness. We offer the example of the Partnership Project, which provides people with psychiatric disabilities a consumer or non-consumer "partner" (...) class='Hi'>with whom to enjoy community activities and spend a weekly stipend. Through the lens of narrative, we examine the ways that friendship differs between people matched with either a consumer or non-consumer partner and delve into the importance of connection and friendship in the lives of people with psychiatric disabilities. (shrink)

Loss is an inevitable part of life and grief is a natural part of the healing process. In this sense, the grieving process is universal. People commonly associate certain losses with strong feelings of grief. Although the concept of grief is a direct reminder of death, grief and loss can happen in different ways – death, divorce, deployment or other situations of abandonment. Different effects can influence how people understand and approach the grief process such as importance (...) and place of the loss in life, cultural background, belief systems, etc. Having mentally retarded child is also a shocking and unexpected situation for parents who are dreaming about a healthy baby. Parents can experience grief at this process. In 1969, psychiatrist Elisabeth Kübler-Ross introduced what became known as the “five stages of grief.” These stages of grief were based on her studies of the feelings of patients facing terminal illness, but many people have generalized them to other types of negative life changes and losses, such as the death of a loved one, losses of dreams or unexpected disability situations. In this article, grief reactions of mothers who learns that she has a mentally retarded child during birth was investigated. It was determined that the five stages of grief proposed by Elisabeth Kübler-Ross (denial, anger, bargaining, depression and acceptance) are experienced by mothers. Also it was observed that, mothers need grief counseling in this process. (shrink)

In this paper, the author addresses the problem of socialisation of children with a history of disabilities and mental retardation by means of visual arts. It is important to look at the very sphere of life of these categories of children. As a rule, these children, for the most part, live in dysfunctional families, which makes it almost impossible to provide them with a form of socialization. This article focuses on the extent to which and how (...) a programme of socialisation of these children can be achieved through the medium of visual arts. At the moment there are works of modern pedagogues who have devoted their scientific researches to this problem, but there are few teachers-artists who deal with this problem. In this article the author devotes his creative attention to this issue and reflects on what means of fine arts and visual literacy can develop and guide in the right direction the socialization of children and young people with disabilities by means of fine arts. A number of scientific works devoted to this problem are seriously reviewed. The author is actively trying to draw the attention of the teaching community to the problem of prevailing social conditions, to reach an educational and cognitive level and, as a consequence, to a better product of the set task of socialization of children with special needs and disabilities in the learning process by means of subject disciplines: drawing, painting, composition, printmaking, etc. (shrink)

The history of the recovery movement began with a pushback against treatment, and the philosophies that it was founded upon still have relevant applications to contemporary social work practice. Financial aspects of service provision for people with serious mental illnesses have enabled other actors in the medical model of psychosis treatment to benefit, while disempowering and dehumanizing the consumers of those services. Since then, other movements like Psychopolitics and the Mad Movement have helped empower psychosis survivors (...) to advocate for their right to self-determination amid the epistemological pressure to identify as disabled. Social workers would like to believe that the field has moved beyond the philosophies that perpetuated institutionalization of people with serious mental illnesses. Contemporary examples, however, reveal how social services in the US maintain the status quo of sanism for psychosis survivors. (shrink)

This chapter contains sections titled: 1. Frontiers of Justice and the Challenge of Disability 2. The General Approach of Frontiers of Justice 3. Equality and Adequacy 4. Social and Economic Entitlements 5. Equality in Education 6. Equality in Political Entitlements Acknowledgments References.

End-of-life care is the only major reference to systematically explore the unique medical, social, legal, political, and ethical issues to consider while providing care to adults and children with intellectual and developmental disabilities who are facing terminal illness or life-limiting conditions.

1 This book is the product of a one-year project conducted by the Hastings Center, Institute of Society, Ethics and the Life Sciences, during 1976-1977. The Behavior Control Research Group-an ongoing, interdisciplinary working group com posed of philosophers, psychiatrists, psychologists, social sci entists, and lawyers-met four times over the course of the year with special consultants with expertise in the field of mental retardation. At those meetings, participants gave in formal presentations, which were followed by group discus (...) sion. As the project progressed, formal papers were delivered and subjected to further critical commentary. This volume, in two related parts, represents the deliberations of the group as a whole, and then offers individual papers prepared by some scholars in order to give a sense of the kind of specific arguments on which the general conclusions were based. We undertook the project to examine: (1) questions of competence and consent; and (2) the practical implications, lThe project, entitled "Ethical Issues in the Care and Treatment of the Mildly Mentally Retarded," was supported by the EVI5T program of the National Science Foundation under Grant No. 05576-14793. Any Opinions, findings, conclusions, or recommendations expressed herein are those of the authors and do not necessarily reflect the views of the National Science Foundation. ix x PREFACE in terms of care and treatment, that evolve from differing definitions and models applied to mental retardation. (shrink)

People with cognitive disabilities and their advocates often express uneasiness about prenatal testing and the selective termination of pregnancies because the fetus has a cognitively disabling condition. There are high rates of abortion in such circumstances, and new forms of noninvasive prenatal testing (NIPT) have been introduced to improve the detection of genetic conditions. This chapter argues that the feeling of disquiet about prenatal testing and selective termination is justified. Philosophers working in the field of bioethics often (...) offer reassurance that such feelings are unjustified. This chapter shows that such reassurances fail and presents an argument that bias against people with cognitive disability plays a role in prenatal decision-making. Feelings of disquiet are justified because it is justified to object to bias that is otherwise directed at oneself. (shrink)

In the virtual world, people can reconstruct their identity the way they want with avatars. Many expect the high degree of freedom in avatar customization will give new chances to socially marginalized people experiencing discrimination against their physical traits. Accordingly, research on a virtual embodiment of marginalized people has been steady with increased interest in equity and inclusion. However, even discourse alienates people with disabilities. In addition, there are few studies on the (...) virtual representations of people with disabilities. Therefore, this paper explores the shared perception of avatar-based disability representations among people with disability to help understand how they want to construct their disability with avatars. The study also gives direction for a barrier-free virtual world. We conducted semi-structured in-depth interviews with people with physical impairments who used virtual world services and performed a core-periphery analysis of social representations. This study expands the range of academic adoption of the social representations theory and provides insights for stakeholders such as service providers to design an inclusive virtual world. (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 republican ideal of non-domination identifies the capacity for arbitrary interference as a fundamental threat to liberty that can generate fearful uncertainty and servility in those dominated. I argue that republican accounts of domination can provide a powerful analysis of the nature of legal and institutional power that is encountered by people with mental disorders or cognitive disabilities. In doing so, I demonstrate that non-domination is an ideal which is pertinent, distinctive, and desirable in thinking through (...) psychological disability. Finally, I evaluate republican strategies for contesting domination, focusing on the limits of contestatory democracy, and proposing a participatory alternative which better addresses problems of political agency in the mentally disordered and cognitively disabled. (shrink)

Literatures of Madness: Disability Studies and Mental Health brings together scholars working in disability studies, mad studies, feminist theory, Indigenous studies, postcolonial theory, Jewish literature, queer studies, American studies, trauma studies, and comics to create an intersectional community of scholarship in literary disability studies of mental health. The collection contains essays on canonical authors and lesser known and sometimes forgotten writers, including Sylvia Plath, Louisa May Alcott, Hannah Weiner, Mary Jane Ward, Michelle Cliff, Lee Maracle, Joanne Greenberg, Ann (...) Bannon, Jerry Pinto, Persimmon Blackridge, and others. The volume addresses the under-representation of madness and psychiatric disability in the field of disability studies, which traditionally focuses on physical disability, and explores the controversies and the common ground among disability studies, anti-psychiatric discourses, mad studies, graphic medicine, and health/medical humanities. (shrink)

It is only in the past 20 years that the concept of 'recovery' from mental health has been more widely considered and researched. This book is unique in addressing philosophical issues - including conceptual challenges and opportunities - raised by the notion of recovery of people with mental illness.

This article critiques how the chromosomal condition ‘trisomy 21’ (‘T21’) (‘Down syndrome’) was originally conceptualised using colonial, scientific and medical discourses on ‘race’ and ‘idiocy’. Nineteenth century discourses surrounding ‘degeneracy’ commonly intertwined the notions of ‘race’ and ‘idiocy’. In Observations of an Ethnic Classification of Idiots, Down categorises people with T21 as ‘Mongolians’ because of their purported similarities to ethnic ‘Mongolians’. The discourse-historical approach (DHA) to critical discourse analysis (CDA) is used in this article to examine how the (...) ‘Mongolian idiot’ is constructed by Down as the ‘other’, being simultaneously a ‘racial other’, a ‘disabled other’, and an ‘idiotic other’. Down theorises that ethnic ‘Caucasians’ with ‘idiocy’ have ‘retrogressed’ to primitive forms as characterised by the ‘Mongolian family’. His report also essentialises the ‘Mongolian idiot’, defining their ‘degeneracy’ and ‘otherness’ in terms of their physical, behavioural, and mental characteristics. Whilst Down’s ‘mongolism’ has since been refuted, aspects of his report are reproduced in some contemporary medical and scientific discourses. Although these discourses are less essentialist than Down’s, they persist in constructing the ‘otherness’ of T21, by foregrounding its ‘abnormalities’ and ‘disorders’. Significantly, facets of ‘degeneracy’ appear in evolutionary developmental biology, connecting T21 with ‘atavisms’, though without the racial framework. (shrink)

The Americans With Disabilities Act (ADA) promotes social justice by protecting disabled persons from discrimination and prejudice. It seeks equality of opportunity for them and protects their well being by giving them fair access to goods, services and benefits. These rights are circumscribed in the ADA, however, by constraints of cost, efficiency, utility, and certain social mores. The ADA offers little direction about how to set priorities when these values come into conflict, or about whether equality of opportunity (...) favors equivalent or preferential treatment for disadvantaged people. Until these ambiguities and potential value conflicts are resolved, a central moral and social problem remains unresolved: How can we demonstrate commitment to the rights and welfare of those with severe disabilities while placing fair limits upon their claims? Five special concerns are discussed: (1) eligibility and the allocation of health care; (2) the meaning of ‘qualified but disabled’ in employing people with mental disabilities; (3) equal opportunity and problems of envy and malingering; (4) ADA accommodation and public protection through testing and licensure; and (5) ADA protection and problems of backlash. Rather than simply wait to see what courts and administrative agencies decide, we should evaluate the moral conflicts, articulate criteria, and help make some difficult choices on morally defensible grounds. Keywords: disabled, health benefit plans, health care rationing, health care reform, health priorities, health services accessibility, Oregon, Rawls, selection bias, social justice CiteULike Connotea Del.icio.us What's this? (shrink)

For patients with mental health problems, de-institutionalization has meant a shift from institutional care to living in the community. However, several studies show that problems of stigmatization, loneliness and negative attitudes devalue the dignity and autonomy of these patients. The aim of this study was to gain a deeper understanding of how people with mental health problems experience living in an apartment of their own. The data collection method was focus group interviews. The constant comparative (...) method revealed the main category ‘preserving integrity’. The subcategories were: the need for control over information, similar relationships with both friends and neighbours (symmetrical contact), and ‘My home is my castle’. Participants who lived in a group home had little or no contact with their neighbours. The participants experienced lack of acceptance and loss of autonomy when meeting people. Integrity was a necessary condition in order for them to become equal citizens, experience autonomy and dignity, and have the opportunity to develop social contacts. (shrink)

IntroductionSelf-stigma arising from public stigma is a heavy burden for people suffering from mental health problems. Both public stigma and self-stigma encompass the same three elements: stereotype, prejudice, and discrimination. Public stigma has already been successfully explored by the Stereotype Content Model and the Behaviors from Intergroup Affect and Stereotypes map. However, this is not the case for self-stigma. Therefore, this is the first study that applies SCM and the BIAS map to self-stigma by examining whether the effects (...) of self-stereotypes on self-directed discrimination would be mediated by self-directed prejudices in people with mental health problems.MethodWithin a total sample of N = 823 participants, who took part in an online survey, n = 336 people reported mental health problems. Mental health and self-stereotypes, self-directed prejudice, and self-directed discrimination were assessed.ResultsStructural equation modeling supported the hypothesis that the stereotype dimensions warmth and competence negatively related to prejudice, while stronger prejudice was associated with more discrimination. Prejudice fully mediated the relationship between stereotypes and discrimination. The indirect effects of warmth and competence on active and passive self-harm were moderated by competence and warmth.DiscussionImplications for further research on self-stigma and the usage of SCM and BIAS map are discussed. (shrink)

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

Resource added for the Nursing-Associate Degree 105431, Practical Nursing 315431, and Nursing Assistant 305431 programs.

BackgroundAs moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research.MethodsA multiple-case study was conducted in a care organization for people (...) with intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level.ResultsAccording to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up.ConclusionsConcretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences. (shrink)

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we analysed how (...) their expression of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

This chapter contains sections titled: Introduction: Liberalism and Inclusiveness Liberalism: Political and Metaphysical Collaborating on Ideas of the Good Powers of Self‐Control Conclusion References.

A complete theory of the permissibility of sex must not only determine the permissibility of sex between typical adult humans. In addition, it must also adequately take into consideration sex acts involving non-human animals, children, and humans with intellectual disabilities. However, when trying to develop a non-discriminatory account that includes these beings, two worrying problems of animal sex arise. To surpass them, I argue for a reformulation of the standard theory. To produce a truly inclusive account our theory (...) should be focused on assent, dissent, the significance of sex, and the similarity of the beings engaging in the sex act. (shrink)

The aim of this paper is to analyse the ethical issues relating to privacy that arise in smart homes designed for people with dementia and for people with intellectual disabilities. We outline five different conceptual perspectives on privacy and detail the ways in which smart home technologies may violate residents’ privacy. We specify these privacy threats in a number of areas and under a variety of conceptions of privacy. Furthermore, we illustrate that informed consent may (...) not provide a solution to this problem. We offer a number of recommendations that designers of smart homes for people with dementia and people with intellectual disabilities might follow to ensure the privacy of potential residents. (shrink)

This study appeared in full in the last issue of Research Ethics Review : 160). DS is researching the experiences of black Caribbean and black African people who use mental health services. The mental healthcare organization serves a diverse catchment area and senior members of staff are keen to show that they are taking the views of black services users seriously. They have, therefore appointed DS to undertake a three-year research project about black people's experiences in (...) the catchment area. DS is planning to survey statutory and voluntary organizations to map the services they provide and then use focus groups to ascertain the views and experiences of users and carers. The aim is to identify what they find most helpful, what is not helpful and how services could be improved to become more culturally-competent. (shrink)

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

This paper spotlights ways in which sexual capacities relate to central human capabilities, such as the ability to generate a personally meaningful story of one’s life; be physically, mentally and emotionally healthy; experience bodily integrity; affiliate and bond with others; feel and express a range of human emotions; and choose a plan of life. It sets forth a dignity-based argument for affording older people access to sex robots as part of reasonable efforts to support their central human capabilities (...) at a floor level. The argument develops stepwise: (1) first, I dispel ageism and negative stereotypes about later-life sexuality, showing their deep historical roots in medicine and science; (2) second, I set forth a positive argument, grounded in capability accounts of justice, for deploying sex robots for older people with disabilities; (3) finally, after responding to objections, I conclude that sex robots are a reasonable way to support later-life sexuality for persons with disabilities. While often depicted as a product for younger, able-bodied people, this paper is a bid for reimagining sex robots as a product for older, disabled people. (shrink)

ABSTRACT In his book The End of Life James Rachels argues that in a situation of forced choice if we must choose between a more and a less complex human being we have good reason to choose in favour of the normal human. He argues also that since some humans have less complex mental abilities than some animals it will sometimes be right to choose a non‐human animal in preference to a human being. I do not consider Rachels’belief that (...) sometimes non‐human animals are to be preferred to retarded humans; I focus rather on the seemingly less contentious belief that in situations of forced choice, we should choose human beings with more rather than less complex lives. I reject this contention both because Rachels does not seem to have offered a worthwhile argument in its favour and also because I find his cavalier approach to the lives of people with intellectual disabilities morally offensive. En route I argue against his simplistic separation of human lives into the categories ‘simple’and ‘complex’on the basis of whether the individuals in question fall into what he seems to take as given—the clear cut categories ‘mentally retarded’and ‘normal’[1] [2]. (shrink)