This paper contrasts the personal experiences of a man with learning disabilities and autism with staff in two different settings: a long-stay institution for people with learning disabilities, and the community. These experiences highlight some of the potential personal, professional and ethical conflicts facing staff working in learning disability services.

Personalisation is the new mantra in social care; this article focuses on how personalisation can be achieved in practice, by presenting an analysis of data from people with learning disabilities and their personal assistants, where traditional care relationships have often been shown to be disempowering. The focus here is on the ways in which both parties use references to shared knowledge, joint experiences or personal-life information. These strategies can be used for various social goals, and instances (...) are given where shared references are used during non task-related talk. Both parties are seen on occasion to attempt to refer to shared information, and dense layers of inference can result, which move the interaction onto an ordinary, more symmetrical and friendly footing. The article concludes that shared knowledge referencing creates a way to shift between the personal and the professional, to blur the boundaries, and to create a new and more personalised relationship. (shrink)

This paper will explore the power of history in affecting contemporary caring practice. Drawing on the author's personal experience as a social worker, researcher and parent of a daughter with learning disabilities, the article will consider the ways in which the experience of (and to an extent, nostalgia for) the ?heady days? of de-institutionalisation continues to influence staff perceptions about their work. In doing so, this article will critique normative notions of choice and control that are at (...) the heart of current moves towards self-directed support and personalised services. The author contends that staff who support people who have learning disabilities need something with which to compare and validate their practice. In the 1980s the hospitals were easily identifiable as something negative with which practice ?in the community? could be compared. In the twenty-first century the need for a comparator is still there, but the hospitals and many of their associated structures such as Adult Training Centres have gone. The paper argues that the family can be a contemporary structure against which current practice can be measured. (shrink)

Background: Humor, both producing and appreciating, underpins positive social interactions acting as a facilitator of communication. There are clear links to wellbeing that go along with this form of social engagement. However, humor appears to be a seldom studied, cross-disciplinary area of investigation when applied to people with an intellectual disability, this review collates the current state of knowledge regarding the role of humor behavior in the social interactions of people with intellectual disabilities and (...) their carers. Method: A systematic review utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was completed which aimed to explore the current state of knowledge and quality of empirical evidence relating to humor in people with intellectual disabilities. Following this, articles were grouped thematically and summarized. A comprehensive search of four electronic databases (1954–2017) and additional search strategies yielded 32 articles which met the final inclusion criteria. Results: Humor played a significant positive and negative role in the social interactions of people with intellectual disabilities. Research had investigated humor in the classroom and humor expression in different groups including those with autism, Down syndrome, Angelman syndrome, Williams syndrome and Rett syndrome. Few investigations directly studied humor appreciation and comprehension hence themes did not focus solely on humor production/appreciation. Humor comprehension was reportedly supported by gestures. Some groups with intellectual disabilities found non-literal humor (e.g. sarcasm, irony) more difficult to understand which may affect social relationships. Various types of humor were found to be appreciated. The role of humor in relationship development, social facilitation, creativity and stigma had all received some limited attention. Humor also played a role for carer groups in coping with and enjoying the caring role. Research varied in quality with few experimental studies and mainly quasi-experimental and well-conducted qualitative studies. Conclusions: This review revealed the importance of humor behavior in many aspects of the social lives of people with intellectual disabilities. Limited disparate research exists pertaining to humor in this group, suggesting the need for further robust research in this area, including more high quality primary research in the areas of humor production, appreciation, comprehension and stigma. (shrink)

People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas (...) about autonomy and think instead of it as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it. (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)

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has (...) multiple physical and intellectual impairments, for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided. (shrink)

People with learning disability sometimes display challenging behaviour. This can be managed by use of antipsychotic medication or behavioural therapy or both. There is no solid evidence, however, that these therapies are safe and effective. A randomised controlled trial of antipsychotic medication has been proposed to deliver such evidence. However, this presents difficult issues in the ethics of research with learning disabled people. In particular, is a trial the most efficient and fairest way to (...) evaluate practice in this area? This paper reviews the clinical situation, gives the rationale for the trial, and analyses the ethical arguments for and against such a trial. (shrink)

Learning disabilities are highly prevalent on college campuses, yet students with learning disabilities graduate at lower rates than those without disabilities. Academic and psychosocial supports are essential for overcoming challenges and for improving postsecondary educational opportunities for students with learning disabilities. A holistic, multi-level model of campus-based supports was established to facilitate culture and practice changes at the institutional level, while concurrently bolstering mentors’ abilities to provide learning disability-knowledgeable support, and (...) simultaneously creating opportunities for students’ personal and interpersonal development. Mixed methods were used to investigate implementation of coordinated personal, interpersonal, and institutional level supports for undergraduate science, technology, engineering, and math (STEM) students with learning disabilities. A one-group pre-test post-test strategy was used to examine undergraduate outcomes. Participants included 52 STEM undergraduates with learning disabilities, 57 STEM graduate student mentors, 34 STEM faculty mentors, and 34 university administrators and personnel as members of a university-wide council. Enrolled for two years, undergraduates were engaged in group meetings involving psychoeducation and reflective discussions, development of self-advocacy projects, and individual mentorship. Undergraduates reported improved self efficacy (p =.001), campus connection (p <.001), professional development (p ≤.002), and self advocacy (p <.001) after two academic years. Graduate student mentors increased their understanding about learning disabilities and used their understanding to support both their mentees and other students they worked with. Council members identified and created opportunities for delivering learning disability-related trainings to faculty, mentors and advisors on campus, and for enhancing coordination of student services related to learning and related disorders. Disability-focused activities became integrated in broader campus activities regarding diversity. This research explicates a role that college campuses can play in fostering the wellbeing and the academic and career development of its students with developmental learning and related disorders. It offers an empirically tested campus-based model that is multilevel, holistic, and strengths-based for supporting positive outcomes of young people with learning disabilities in STEM. Moreover, findings advance the knowledge of supports and skills that are important for self-regulating and navigating complex and multi-faceted disability-related challenges within both the post-secondary educational environment and the young adults’ sociocultural context. (shrink)

There is a view that what we owe to other people is explained by the fact that they are human beings who share in a common human life. There are many ways of construing this explanatory idea, and I explore a few of these here; the aim is to look for constructions that contribute to an understanding of what we owe to people with profound and multiple learning difficulties and disabilities. In exploring the idea of (...) sharing in a common life I construe ‘sharing’ as ‘participating in’, and ‘common life’ as the social life characteristic of the environment that someone lives in. My principal purpose is to render the idea of sharing in a common life in terms that help explain its eligibility as a ground for establishing the moral status of people with PMLD. The participatory options I examine each make some call on agency, if only as something hoped for in the future, including when hope flies in the face of expectation. Accordingly I look at conceptions of actual and potential participation in social life, and at the idea of treating people as if they have the potential to participate, even when the existence of any such potential is unlikely. I conclude with some thoughts on the relation between participation and the moral status of profoundly disabled people, and about how much, and how little, the argument has achieved. (shrink)

Exploring the dynamics of power: A Foucauldian analysis of care planning in learning disabilities services This paper draws upon a study completed in 2000 that focused upon health and welfare provision for people with learning disabilities in one English county. This study drew upon the theoretical insights of Michel Foucault to provide an analysis of the micro politics of care planning. This involved the analysis of text from two sources: the academic literature and interview (...) material gained from a number of professionals working in health and welfare services for people with learning disabilities. Drawing upon this research material, the first part of this paper briefly explores the relationship between policy, professional practice and the people who are the subjects of that practice. The discussion then moves on to consider Foucault's five methodological precautions and the way power produces a localised web of activity that identifies specific targets for management. In this process power draws into the web a range of informal and formal practices that initially lie outside of the web. The discourse produced through the activity surrounding care planning provides the evidence of this flow of power. This discourse then takes on the status of science (truth), which reproduces this activity. (shrink)

Background: The use of therapeutic untruths raises a number of ethical issues, which have begun to be explored to some extent, particularly in dementia care services, where their use has been found to be high. Little is known, however, about their use by health professionals working in learning disability services. Research question: The study aimed to explore the frequency of use of therapeutic untruths by student learning disability nurses, and by their colleagues; how effective the students perceived them (...) to be as a means of responding to behaviours that challenge; and their level of comfort with using them. Research design: A correlational design was used to gather data from an online version of the Best Interest Scale, adapted for a learning disability context. Participants were 30 learning disability student nurses studying at a university in the North-East of England. Ethical considerations: The study was reviewed and received ethical approval from the first author’s university ethics committee. Findings: Overall, 96% of participants reported using therapeutic untruths. ‘Omission’ was the most frequently used type of therapeutic untruths, the most effective and the type that the students felt most comfortable using. Frequency of use of therapeutic untruths correlated significantly and positively with perceived effectiveness and the level of comfort that the students felt when using them, for all types of therapeutic untruths. Conclusion: The use of therapeutic untruths by the student nurses was consistent with that found in research in dementia care services in the United Kingdom and abroad. Further research to explore the generalisability of the results to the wider context of learning disability services is needed. The study highlights that there may be a need for more formal guidance and educational input to student nurses in the use of therapeutic untruths with people with a learning disability. (shrink)

Does life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these questions: they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or (...) disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues. This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult topics: How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified. This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with disability. (shrink)

People with neurodevelopmental disorders are often considered unsuitable or incapable of working in open employment. When employment is available, tasks are often limited, and opportunities for career development are restricted. Policy and funding constraints leave people with disabilities without an opportunity to develop skills due to the additional time and costs for employers. To overcome these barriers, virtual environments have been proposed as a safe and reliable solution for training. An important prerequisite for a wider (...) uptake of training in virtual environments are demonstrations that the training leads to improved performance in the real world. This is particularly true for people with neurodevelopmental disorders, as transferring learnings from one context to another can be challenging. A systematic review was conducted to assess whether training in virtual environments can be used to improve real-world vocational skills in people with neurodevelopmental disorders. After a systematic search in six databases, eight out of the initially identified 1,806 articles met the inclusion criteria. The findings from these eight studies demonstrate that people with neurodevelopmental disorders can transfer vocational skills from virtual environments to real-world settings. With substantial technological improvements, a surge in accessibility, and improved affordability, there is a need to build upon the promising results identified in this review. (shrink)

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)

This chapter is devoted to reflecting on the role of empathy in interactions with people with profound intellectual disabilities. We have a duty to respect people with intellectual disabilities. Respect involves identification with a point of view. We owe them an effort at identification with their perspective. However, if intellectually disabled people’s communicative abilities are impaired, our apprehension of their point of view might be limited, reducing our ability to identify (...) with them and respect them. To answer this challenge, I appeal to empathy. Through imaginative empathy, we can learn to identify with their perspectives. I argue that empathy is a good moral guide and can be helpful in developing respectful attitudes toward people with profound intellectual disabilities. (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.

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)

Events such as industrialization, population growth and old age have made the disability more visible. We think that the disabled people's attitude towards being disabled and religion is an important issue to be investigated in terms of formation of the social sensitivity about the learning of the thoughts of disabled people. In this context, it is aimed to investigate the function of the religion in terms of how the disabled identify, understand and overcome the problems related to (...) being disabled. The sample of the study consisted of 58 people, 20 (34.5%) female and 38 (65.5%) male. Semi-structured interview technique was used as the research qualitative research method and descriptive analysis technique was used in the analysis of the data. In the article, the relation between disability and religion has been tried to be understood in terms of sociology of religion in the context of functionalist approach. In general, disabled people evaluate disability (81.1%) as "examination", (10.3%) as "problem" and (8.6%) as "difference”. It is concluded that religion affects the thoughts of disabled person in a positive way to understand and accept the disability. It has been seen that the disabled people have applied to the state, social support systems and spiritual values ​​to overcome their problems. However, it is the duty of all social institutions to increase the social sensitivity to the disabled people.Summary: Events such as industrialization, population growth and old age have further increased disability. It is important that the social sensitivity towards disabled people and disabled people’s thoughts about disability should be learned. We think that the disabled people's attitude towards being disabled and towards religion is an important issue to be investigated. In this study, the functions of religion to overcome the problems related to the disability and the way how the disabled people define and understand the disability will be investigated. In this context, we think that an individual's overcoming the problems related to disability is an important issue that should be examined in terms of religion-referenced behavior.The sample of the study consisted of 58 people, 20 (34.5 %) female and 38 (65.5 %) male. Semi-structured interview technique was used as the research qualitative research method and descriptive analysis technique was used in the analysis of the data. In the article, the relation between disability and religion has been tried to be perceived in terms of sociology of religion in the context of functionalist approach.It is a fact that various approaches to disability in various societies have been made during the historical process. These approaches are known as moral, medicinal/medical, social, human rights and limitative models. Each of these approaches points to a specific direction and problems of disability. In other words, each model handles and predicts a different dimension of the subject.According to the Qur’ân, disability means not to be in a bodily sense, but to stay away from the truth and expressed in the way of not seeing the truth, not grasping and not hearing, that is, figuratively meaningful. Again from the point of view of the Qur’ân, the first cause of disability comes to people through the divine will and test. The others are due to people's own mistakes.The changing paradigm shift with the enlightenment process has changed the way people view each other. In this context, with the thought and modernization of enlightenment, people's view of human beings and environment has changed. The body which is thought as the trust of God has turned into a body in which one is his proprietor. Therefore, this situation brought the contest, the debate, the comparison and the alienation together.Today, people with disabilities face many financial, spiritual, social and cultural problems. Poverty arising from unemployment, livelihood, accommodation constitute financial problems that are the first to come to mind; access to places of worship, instruction of worship, fulfillment of worship, lack of spiritual care and support constitute spiritual problems; education, health, access and social exclusion constitute social and cultural problems.Disabled people ask themselves these questions related to disability: Why did it happen to me? If it is a test, why do not I start the test on equal conditions with healthy people? Here the disabled person consults the religion to understand and find an answer to the situation that he is in. Because religion is an important factor that responds to the search for meaning, it reduces the feeling of deprivation, and fulfills the task of compensation mechanism. In addition to this, religion gives life a goal and power to the person to overcome the problems he encounters with.In our research on the relationship between disability and religion, religion as in many subjects has contributed positively to the individual’s view towards the fact of disability and to overcome some problems. For example, as a result of the research, the participants evaluated "disability" (81.1 %) as ‘test’ (10.3%) as ‘problem’ and (8.6 %) as ‘difference’.They answered the question ‘How has the disability affected your religious thoughts?’, 71% of the participants expressed that it has affected in a positive way (as a test, made me closer to God, increased my loyalty to God, a motivation source). Besides, 23 % of the participants expressed that it hasn't caused any changes (already believed, fate, disability isn't an obstruct to worship) and 6 % of the participants expressed that it has affected in a negative way (my life is upside down, I am questioning this situation).In addition to those who answered the question ‘Has the disability affected your life?’ in a ‘positive’ way, there is a considerable amount of people who said that the entrances of the mosques are not suitable for the disabled people. In addition, the disabled people stated that they have problems with the way of worshipping (orthopedically disabled), listening to the Qur’ân, hearing the azan (hearing impaired), and cannot go to the mosques and cannot fast because of the health problems, all of which have affected their religious life in a ‘negative’ way. We can gather the answers given to the question in three categories about what kind of behaviors the disabled people do to overcome/eliminate problems. The first is that they receive a variety of services and assistance by applying to the state for material support in order to overcome the problems related to disability and the second is that the social support services are mainly given within the family and friends, and the third is they worship, pray and fast, which are must of Islam, to eliminate the spiritual distress.The rate of people, whose answers are ‘positive’ to this question ‘Does your religious belief have an effect to deal with the disability?’ because they believe the afterlife and who say they feel relieved by praying and worshipping, is very high (95%). Moreover, it is remarkable that the ones say they are ‘not positive’ still explain this with religious concepts such as test and examination which require patience. In short, religion relieves disabled people by fulfilling the task of compensation mechanism with understanding disability and overcoming problems.Almost half of the participants (45%) said no to the following question: Is there any kind of material/spiritual support given to you by the religious officials or religious people in your community? Some factors affecting this situation are that religious officials have no knowledge and education about how to treat disabled people and how to help them.As a result, disabled people face various financial and spiritual problems. They consult religion to solve some of these problems. The vast majority of the disabled consider disability as a test and a fate. Therefore, religion plays an important role for disabled people to understand disability and cope with it. Besides, disabled people have stated that they face various problems in fulfilling their worship and in accessing the places of worship. In this context, physically disabled people also need the supportive power of religion just like other disabled people. (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)

Well-being is an important policy concept including in discussions around the use of artificial intelligence, machine learning and robotics. Disabled people experience challenges in their well-being. Therefore, the aim of our scoping review study of academic abstracts employing Scopus, IEEE Xplore, Compendex and the 70 databases from EBSCO-HOST as sources was to better understand how academic literature focusing on AI/ML/robotics engages with well-being in relation to disabled people. Our objective was to answer the following research question: (...) how and to what extent does the AI/ML/robot literature we covered include well-being in relation to disabled people? We found 2071 academic abstracts covering AI/ML and well-being, and 1055 covering robotics and well-being. Within these abstracts, only 39 covered AI/ML and 48 robotics and well-being in relation to disabled people. The tone of the coverage was techno-positive and techno-optimistic arguing that AI/ML/robotics could improve the well-being of disabled people in general or improve well-being by helping disabled people overcome their ‘disability’ or make tasks easier. No negative effects that AI/ML/robotics could have or has had on the well-being of disabled people were mentioned. Disabled people were portrayed only within patient, client, or user roles but not in their roles as stakeholders in the governance of AI/ML/robotics discussions. This biased and limited coverage of the impact of AI/ML/robotics on the well-being of disabled people disempowers disabled people. (shrink)

Growing numbers of human beings live with profound and multiple learning difficulties and disabilities. Exploring the moral, social and political implications of this trend, Valuing Profoundly Disabled People addresses questions that are high on policy and practice agendas in numerous regions around the world, including the UK and the EU, the USA, and Australasia. In this important work Vorhaus examines fundamental moral and social questions about profound disability, and each chapter combines a comprehensive review of existing (...) literature with thought-provoking and original philosophical arguments. Vorhaus argues that there is a pressing need to consider the moral and political claims of people whose lives are characterised by extensive impairments, dependency and vulnerability. The book prompts readers to reflect on complex issues relating to the practices of caring, teaching and treating people with profound disabilities in contexts such as education, health care and social policy. Providing a much-needed contribution to the field, this book will be of interest to postgraduates, academics and researchers in a number of distinct and interrelated fields, including disability and impairment, human rights, philosophy, sociology, health and social policy, and education. The book will also be of great interest to practitioners and policymakers seeking to promote the aims of realising human potential and respecting disability. (shrink)

Background:Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy.Objective:To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy.Setting:Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual (...) class='Hi'>disabilities.Methods:Ethnographic field study.Ethical considerations:The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee.Findings:Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.”Conclusion:Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach. (shrink)

What are the main learning difficulties or advantages encountered by students with learning disabilities within e-environments? As a result of the Covid-19 emergency, e-learning is being increasingly used to support students’ learning processes. A number of countries closed their schools altogether, so face-to-face lessons were and have been replaced by distance lessons. A search of current literature via Scopus, Eric and Google Scholar electronic databases was conducted according to Prisma Guidelines. Other sources of literature (...) were also considered, starting from the references in the full text of the articles consulted. We used the following search keywords: “LDs” combined with the “AND/OR” Boolean operator and “e-learning platforms,” “well-being,” “psychological factors,” “emotional distress,” and “self-regulation.” One body of literature highlights the lack of inclusive accessibility standards and a lack of attention to specific tools for addressing LDs, which causes students to develop high levels of stress/anxiety and emotional distress, in addition to low levels of well-being, self-esteem and self-efficacy. Another area of literature looks at how students can develop high levels of self-regulation and emotional awareness, as well as high levels of inclusion. Results are discussed in terms of the promotion of e-learning that focuses on the psychological well-being of students and teachers use of technological tools. (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)

The Mental Incapacity Bill not only paves the way for euthanasia, but invites wholesale abuse and homicide, writes Jacqueline Laing. On 19 October 2004, when the Mental Capacity Bill was at its crucial committee stage, the Law Society issued a statement of ‘strong support’, claiming that it empowers patients and in no way introduces euthanasia. Laing argues that the Bill threatens the incapacitated by granting a raft of new third parties power to require that health professionals withhold ‘treatment’, which, after (...) the controversial decision in Airedale NHS Trust v Bland [1993] AC 789, includes food and fluids delivered both by tube and, in certain cases, by spoon. The Bill further endangers the vulnerable, first, by allowing non-therapeutic research on the non-consenting mentally incapacitated, in breach of the Nuremberg Code and First Declaration of Helsinki, and secondly, by permitting new agents power to undertake on people with learning disabilities certain questionable procedures currently authorised by the High Court, such as non-voluntary sterilisation. (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)

Disability rights advocates have traditionally denigrated charity as politically counterproductive and inherently demeaning. This article argues that this perspective mischaracterizes charity of a religious kind. Religious charity, I argue, must be understood immanently, through an exploration of the virtues cultivated in particular religious organizations. I consider two Catholic charities: L’Arche, a community for intellectually disabled people, and the end-of-life care facility Our Lady of Perpetual Help Home. At each organization, individual acts of charity are emblematic of an underlying virtue (...) that I call caritas or charity-love. This transforms them into gestures that advance goals that are consonant with those of the disability rights movement. In the case of Our Lady, this is even true of pity, perhaps the most despised emotion of the disability rights tradition. But while disability rights advocates have characterized pity as essentially devaluing disabled people, at Our Lady, it is an emotion that freely circulates, undoing hierarchical distinctions between ability and disability, and even human and divine. This redefined notion of pity—which I term misericordia—can, I conclude provide a new foundation for disability politics, one that radicalizes the goals of the disability rights movement, while also positing objectives that go beyond legal compliance. (shrink)

The purpose of the present study was to predict and explain the academic cheating behaviors of elementary school students with learning disabilities by applying the cusp catastrophe model. Participants were 32 students with identified LD from state governmental agencies although all both them and the typical students participated in the experimental manipulation. Academic cheating was assessed using an empirical paradigm where true achievement was subtracted from achievement in a test without proper invigilation. Data analysis supported the (...) proposed cusp catastrophe models, where mastery-related motives acted as asymmetry and performance goals as bifurcation variables respectively. These findings were confirmed with application of the interactive goal hypothesis, where the interactive approach and avoidance performance goal term functioned as a splitting factor in the relationship between adaptive motivation and performance. (shrink)

The development of speech language therapy students into clinicians is an area of increasing interest as educators focus on how knowledge, skills and attitudes are taught and learnt within the profession. The personal journeys of students through experiences of service learning have potential to further our understanding of the impact of civic engagement on the student experience and their learning. This paper explores the journeys of first year speech and language therapy students through a Thematic Analysis of reflective (...) letters written by students to themselves at the beginning and completion of a service learning module. Analysis demonstrates development of interpersonal and preclinical skills as well as an understanding of attitudes and values inherent in the social model of disability. The skills and attitudes developed by the students through participation in the Conversation Partner Scheme are consistent with social model principles that support therapists to fully address the long-term, real life needs of clients with aphasia (the acquired communication disorder that frequently follows stroke). The interface between the social model of disability and the role of service learning in nurturing the attitudes and values which underpin this model are explored. (shrink)

In this essay, I provide some insights on how to instruct students with learning disabilities. The first half of this essay deals with the theoretical issue of equal opportunity. I begin by examining the question of access and consider the various ways philosophy remains inaccessible to students with learning disabilities. Then, I use the legal definition of accommodation to argue that it is possible to make philosophy courses accessible to students with (...) class='Hi'>learning disabilities without fundamentally altering the nature of these courses. Finally, I point out several reasons for preferring the accessibility model of equal opportunity in education over the accommodation model. The second half of this essay proceeds to highlight several pedagogical practices an instructor can employ to create an inclusive college-level philosophy course under the accessibility model. Specifically, I provide recommendations for how to write effective accessibility statements, develop inclusive course design, ensure equal assessment opportunities, utilize technology in the classroom, and maintain strong academic relationships between instructors and students. (shrink)

The present study aimed to analyze the stability of the memory of a stressful event (medical examination within a hospital setting) over time in young people (age range 12 to 21, Mage = 15.11 years old, SD = 3.047) with mild or moderate intellectual disability (IQ = 54.32, SD = 13.47). The results show a stability of the memory of what happened an hour and a week after the event in relation to the people involved, the apparatus (...) used, and the parts of the body explored. No interaction effects were found between the stability of memory over time and the level of intellectual disability. The level of disability (mild or moderate) only affected the description of the doctor who performed the exploration and the explored parts of the body, showing better results for people with mild disability. In addition, the results highlight the relationship between memory and IQ, especially verbal IQ. (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)

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)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically (...) different take on what social inclusion for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (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.

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)

People with mild to moderate intellectual or multiple disabilities may have serious difficulties in accessing leisure events, managing communication exchanges with distant partners, and performing functional daily activities. Recently, efforts were made to develop and assess technology-aided programs aimed at supporting people in all three areas. This study assessed a new technology-aided program aimed at helping four participants with intellectual and multiple disabilities in the aforementioned areas. The program, which was implemented following a (...) non-concurrent multiple baseline across participants design, relied on the use of a smartphone or tablet connected via Bluetooth to a two-switch device. This device served to select leisure and communication events and to control the smartphone or tablet’s delivery of step instructions for the activities scheduled. Data showed that during the baseline phase, three participants failed in each of the areas while one participant managed to access a few leisure events. During the intervention phase, all participants managed to independently access leisure events, make telephone calls, and carry out activities. These results suggest that the program might be a useful tool for helping people with intellectual and multiple disabilities improve their condition in basic areas of daily life. (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)

When police officers interview people with intellectual disabilities who allege sexual assault and rape, they must establish rapport with the interviewee but deal with their distress in a way that does not compromise the interview’s impartiality and its acceptability in court. Inspection of 19 videotaped interviews from an English police force’s records reveals that the officers deal with expressed distress by choosing among three practices: minimal or no acknowledgement, acknowledging the expressed emotion as a (...) matter of the complainant’s difficulty in proceeding and rarely explicit reference to their emotion. We discuss these practices as ways of managing the conflicting demands of rapport and evidence-gathering. (shrink)

Liberalism welcomes diversity in substantive ideas of the good but not in the process whereby these ideas are formed. Ideas of the good acquire weight on the presumption that each is a person's own, formed independently. But people differ in their capacities to conceptualize. Some, appropriately characterized as cerebral, are proficient in and profoundly involved with conceptualizing. Others, labeled cognitively disabled, range from individuals with mild limitations to those so unable to express themselves that we cannot be (...) sure whether their behavior is mediated by concepts at all. Constricted cognitive capacities have been thought to prevent participation in the prescribed process for forming personalized ideas of the good. So liberal theory, when formulating principles and practices of justice, often disregards cognitively disabled peoples' perspectives. We put aside metaphysically driven notions about personhood and show how interpersonal processes of “prosthetic” thinking (different from surrogacy) can satisfy liberalism's standards, positioning cognitively disabled individuals as fully participating subjects of justice. (shrink)

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

This paper uses themes from Catholic social teaching to challenge Church and society to prioritize a group that is left behind by social injustice: people with intellectual disabilities. It provides background information on intellectual disability, summarizes moral principles of Catholic social doctrine, describes sociological facts about how people with intellectual disabilities are left behind by social factors, and prescribes actionable solutions for treating them as equal members of society. The goal is to identify how (...) to shape a society at all socio-ecological levels in ways that better protect the dignity, solidarity, and participation of people with intellectual disabilities. Although the analysis references the US and is limited to intellectual disabilities, its lessons apply to other countries and disabilities as well. (shrink)

Galasso (2024) shares findings from narrative analyses of relevant constituting material of and interviews with leaders in two national precision medicine research (PMR) programs: 100KGP of Genomic...