Cet article remet en question les critiques conventionnelles des institutions dans le cadre des études sur le handicap et de l’activisme en s’appuyant sur un travail de terrain dans un foyer catholique et une école pentecôtiste pour les personnes ayant une déficience intellectuelle en Ouganda. Plutôt que de considérer les espaces institutionnels de ces organisations chrétiennes comme des exclusions ségrégatives de la vie sociale au sens large, cet article aborde le travail de ces institutions en termes d’inclusion – des inclusions (...) constitutives, en référence à la manière dont ces organisations pennent en charge non seulement l’existence de base, mais aussi la personnalité de leurs résidents et de leurs étudiants. En retour, une telle analyse permet de repenser les conceptions conventionnelles des institutions dans les pays du Nord ainsi que les distinctions entre les institutions totales et les institutions sociales. (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)

Comment expliquer la persistance des ateliers protégés dans l’insertion professionnelle des personnes en situation de handicap? Malgré les mouvements mondiaux en faveur de l’inclusion et de l’égalité d’accès au marché du travail ordinaire, les ateliers protégés restent un pilier important de la politique d’emploi des personnes en situation de handicap, en particulier pour les personnes ayant des déficiences intellectuelles ou des troubles neuro-développementaux. Cet article aborde l’avenir de l’emploi ségrégé à la lumière du droit international des droits humains garantissant un (...) droit au travail, notamment dans les dispositions relatives à l’emploi de la Convention relative aux droits des personnes handicapées (CRPD). De plus, l’article examine les appels du Comité des Nations Unies en faveur de leur abolition progressive, les tentatives du Comité de clarifier ce qui est considéré comme un emploi ségrégé, et le lien entre cette ségrégation et le principe de désinstitutionalisation. À la lumière des limites de la doctrine des droits humains pour aborder la persistance des ateliers protégés, cet article se tourne ensuite vers les recherches critiques sur le handicap concernant l’abolition des prisons, la désinstitutionalisation et les dispositions concernant l’esclavage moderne pour suggérer de nouveaux cadres théoriques ouvrant la voie à l’abolition de l’emploi ségrégé des personnes en situation de handicap. (shrink)

During the mid 1980s, the renowned American documentary filmmaker Fred Wiseman produced a four-part series of films that sought to record the operations of institutions in Talladega, Alabama, devoted to the care and training of people with disabilities. These films—designated as the Multi-handicapped Series—have received much less attention than Wiseman's earlier work, as if films about disability mark a drastic departure from his previous award-winning productions, such as Titicut Follies (1965) and Hospital (1970). The Multi-handicapped Series takes up general categories (...) of disabled populations as discrete documentary topics, Deaf (1986), Blind (1986), Multi-handicapped (1986) and Adjustment & Work (1986) as opposed to a specific location as in his earlier films. As a result, the latter series of films identify social and interpersonal structures developed in the name of specific conditions. Like Foucault's research on disciplinary tactics, Wiseman's films seek out many of the segregated social spaces typically occupied by persons classified as deviant: prisons, hospitals, charity networks, sheltered workshops, resident facilities, and vocational training structures. The Multi-handicapped Series focuses on the activities of professions and practitioners in education, administration, and therapy, as well as the institutional roles designed for bodies marked as disabled. Unlike its 19th century predecessor classification, feebleminded, the latter twentieth century U.S. policy answer has been waged as a matter of dividing disabilities into a binary structure of orthopedic or cognitive categories. Such a development has left many crossover bodies in a diagnostic no-body's-land. To analyze the history of these developments, this essay recognizes the formation of today's disability category as an effect of new regimes of power; a form of domination based upon the application of particularized diagnostic pathologies that provide the basis for cordoning off bodies which fail to fit neatly within the cognitive/orthopedic binary. As documents of the social spaces that are occupied by disabled people, Wiseman's films offer a rare contemplation of institutional practices and their application to populations viewed as nonnormative. (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)

This article discusses the experience of an Icelandic woman with intellectual disabilities who was sterilized and how she has dealt with it. It also reflects on some ethical and methodological issues that arise during inclusive life history research. The article is based on cooperation between two women, Eygló Ebba Hreinsdóttir, who was labelled with intellectual disabilities when she moved to an institution in Iceland in the 1970s, and the researcher Gu?rún V. Stefánsdóttir. Since 2003 we have worked closely (...) together on an inclusive life history project. The article is based on a recorded conversation between Ebba and Gudrun and the work of the Icelandic women's history group in which both participated for three years. Ebba was sterilized when she was 14 years old but didn't know about the sterilization until she was 27. The article describes the deep emotional impact and how she came to terms with it. (shrink)

If the COVID-19 crisis has brought any benefits, one is the increased attention paid to persons with disabilities in the contexts of clinical medicine and public health. There has been a great deal of insightful discussion since the outbreak about controversial disability issues the pandemic has brought to light. For a population often overlooked in both academic circles and the public square, mere visibility is a victory. There are at least two important respects in which the discussion remains underdeveloped, however.First, (...) much of the work being done has focused on disability considerations in policies governing triage and the rationing of critical care resources under crisis conditions. This is undoubtedly an... (shrink)

Coronavirus vaccines have made their debut. Now, allocation practices have stepped into the spotlight. Following Centers for Disease Control and Prevention guidelines, states and healthcare institutions initially prioritised healthcare personnel and elderly residents of congregant facilities; other groups at elevated risk for severe complications are now becoming eligible through locally administered programmes. The question remains, however: whoelseshould be prioritised for immunisation? Here, we call attention to individuals institutionalised with severe mental illnesses and/or developmental or intellectual disabilities—a group highly susceptible (...) to the damages of COVID-19, recent research shows, and critical to consider for priority vaccination. The language describing both federal-level and state-level intentions for this population remains largely vague, despite the population’s diversity across age, diagnosis, functional status and living arrangement. Such absence of specificity, in turn, leaves room for confusion and even neglect of various subgroups. We review data stressing this group’s vulnerability, as well as select state plans for priority vaccination, highlighting the importance of clarity when describing intentions to vaccinate, or even generally care for, diverse populations composed of distinct subgroups in need. (shrink)

Stress is increasingly being recognized as one of the main factors that is negatively affecting our health, and therefore there is a need to regulate daily stress and prevent long-term stress. This need seems particularly important for adults with mild intellectual disabilities who have been shown to have more difficulties coping with stress than adults without intellectual disabilities. Hence, the development of music therapy interventions for stress reduction, particularly within populations where needs may be greater, is becoming increasingly (...) important. In order to gain more insight into the practice-based knowledge on how music therapists lower stress levels of their patients with MID during music therapy sessions, we conducted focus group interviews with music therapists working with adults with MID from different countries and clinical institutions in Europe. Results provide an overview of the most-used interventions for stress reduction within and outside of music. Data-analysis resulted in the further specification of therapeutic goals, intervention techniques, the use of musical instruments, and related therapeutic change factors. The main findings indicate that music therapists used little to no receptive interventions for stress reduction, but preferred to use active interventions, which were mainly based on musical improvisation. Results show that three therapy goals for stress relief could be distinguished. The goal of “synchronizing” can be seen as a sub goal because it often precedes working on the other two goals of “tension release” or “direct relaxation,” which can also be seen as two ways of reaching stress reduction in adults with MID through music therapy interventions. Furthermore, the tempo and the dynamics of the music are considered as the most important musical components to reduce stress in adults with MID. Practical implications for stress-reducing music therapy interventions for adults with MID are discussed as well as recommendations for future research. (shrink)

Institutional and individual stigmatization represent major barriers that prevent children with disabilities from accessing education. It can be presumed that children with disabilities are labeled as such even in inclusive educational settings and that teachers’ attitudes toward inclusive education and children with disabilities play a crucial role in this context. Against this background, the present study aims to apply and conceptualize the mixed-blessings model in the context of stigma-related reactions to children’s disability labels in inclusive education and shed light on (...) the causal attributions of teachers that underlie stigma-related attitudes toward children with various disabilities. A 3 × 2 × 2 × 2 × 2 online experiment examined the ways in which disability-specific causes and symptoms, the type of disability in question, the children’s sex, and efficacy cues regarding educational efforts affect future teachers’ attitudes toward and expectations of inclusive education as well as their social distance toward children with disabilities. The participants in this experiment were N = 605 German student and trainee teachers representing different types of teaching professions. A multivariate analysis of variance revealed that, in particular, the cause attributed to the disability, the depicted type of disability and the probability of learning success led to changes in attitudes. Respondents’ teaching self-efficacy and their status as students or trainees emerged as moderators of the effect of pupils’ type of disability. As a result, teacher education and training as well as communication regarding pupils with disabilities require a high degree of sensitivity to disability-specific and efficacy-related cues to prevent professional or institutional stigmatization. (shrink)

BackgroundAs Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation (...) and implementation of this qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources.Main bodyOur field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management.ConclusionsConducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies. (shrink)

Retraction note: Ortega Camarero, M. T. (2023). Sheltered employment in Spain: Challenges for a new model of special employment centres. HUMAN REVIEW. International Humanities Revista Internacional De Humanidades, 17(3), 1-15. https://doi.org/10.37467/revhuman.v12.4729 The Editorial Office of Eurasia Academic Publishing Group has retracted this article. An investigation carried out by our Research Integrity Department has found a group of articles, among which this one is found, that are not within the thematic scope of the journal. We believe that the editorial process (...) was manipulated and, furthermore, acceptance decisions were made under possibly inappropriate peer review. (shrink)

Based on interviews and observations conducted in France between 2018 and 2019, this article discusses the notion of a “social welfare model” theorised by sociologist Katharina Heyer, by examining of the implementation of sheltered work policies in France. Facing the evolution of public policies in France, and their will to transform sheltered workshops into transition platforms leading to ordinary employment, can sheltered work establishments still be described as parallel and separate paths to the ordinary labour market? This (...) article shows that the organisation of work in a sheltered environment cannot be thought of in isolation from what is practised in an ordinary environment. Sheltered workshops can provide a response to the specific needs of disabled people, given the dysfunctional nature of the rights model in the ordinary workplace. Nevertheless, ordinary employment remains a reference when organising productive activities in the workshops: it helps define what constitutes work from leisure activities, and it constitutes a model from which to distinguish or to aspire to. (shrink)

This paper discusses a number of ethical issues that arise in the context of ethnographic research with people with severe intellectual disabilities and mental health problems living in closed institutions. These very vulnerable people have tended to live emotionally and physically deprived lives in segregated and bleak environments, and because they cannot communicate through speech, and often have seriously challenging behaviour, they have tended to become socially and physically isolated from society. Most research with people who do not communicate (...) verbally has been quantitative, or conducted through informal and formal carers. Ethnographic research, on the other hand, involves spending long periods of participant observation with people in their ‘natural’ settings, providing intensely qualitative material, in order to present data as far as possible from each individual's perspective. Such research provides rich and emotionally powerful material which is often distressing and even shocking. This raises a number of ethical issues in relation to the conduct of such research, including questions regarding consent – who can give consent for someone who does not have the capacity to give consent themselves? The ethics of publication of such research are also discussed. This paper outlines the reasons why such research, and its publication, is vital for the futures of institutionalized men and women with severe intellectual disabilities. (shrink)

Many social practices treat citizens with cognitive disabilities differently from their nondisabled peers. Does John Rawls's theory of justice imply that we have different duties of justice to citizens whenever they are labeled with cognitive disabilities? Some theorists have claimed that the needs of the cognitively disabled do not raise issues of justice for Rawls. I claim that it is premature to reject Rawlsian contractualism. Rawlsians should regard all citizens as moral persons provided they have the potential for developing the (...) two moral powers. I claim that every citizen requires specific Enabling Conditions to develop and exercise the two moral powers. Structuring basic social institutions to deny some citizens the Enabling Conditions is unjust because it blocks their developmental pathways toward becoming fully cooperating members of society. Hence, we have a duty of justice to provide citizens labeled with cognitive disabilities with the Enabling Conditions they require until they become fully cooperating members of society. (shrink)

What has come to be called critical disability studies is an emergent field of academic research, teaching, theory building, public scholarship, and something I'll call "educational advocacy." The critical part of critical disability studies suggests its alignment with areas of intellectual inquiry, sometimes awkwardly called identity studies, rooted in the political and social transformations of the mid-20th century brought forward by the broad civil and human rights movement. These movements pressed both the law and the social order toward an (...) expansion of rights for people previously marginalized or excluded from full participation in exercising the obligations and benefits of equal citizenship. The ideas of... (shrink)

Abstract:This essay criticizes recent trends in disability policy as restrictive of individual liberty and informed by too narrow a definition of what constitutes human flourishing. I defend the value of intentional community settings as one legitimate residential option for people with intellectual and developmental disabilities. Recent federal regulations (HCBS Final Rule) define intentional communities or disability-specific housing as presumptively institutional in nature, misunderstanding the positive, noninstitutional features of intentional, integrated communities created by and for people with developmental disabilities. In (...) addition, current disability policy, despite its stated concern for the autonomy of people with intellectual and developmental disabilities, limits individual liberty by strictly defining the types of settings eligible for Medicaid waiver funding, expressly excluding agricultural communities, disability-specific residential settings, and intentional communities. A robust commitment to the autonomy of people receiving Medicaid waiver services would allow them to choose to direct their program dollars, recognizing that some individuals may choose a life in intentional community or with others facing similar challenges to themselves over an illusory “integration” into a wider society that remains too often unwelcoming and difficult to navigate. (shrink)

In Japan, inclusion policies place great emphasis on participation in the local community. Sheltered workshops are evolving in this direction, and their number has risen sharply while mainstream employment was being promoted as well. The aim of this paper is to examine the forms of participation in local life offered by these workshops to their workers. It analyzes the strategies implemented by workshop managers to develop opportunities for interaction between disabled workers and the outside population, as well as their (...) impact on the image of sheltered work and disabled workers in the eyes of non-disabled members of the community. This study is based on a fieldwork conducted in 12 workshops in Tokyo, Kyoto and Akita. It shows that many Japanese sheltered workshops allow disabled people who so wish to work in contact with the local population, but also that there is a tension between emphasizing disability and asserting the status of the disabled people as workers. (shrink)

The inclusive society we live in promotes familial and extra-familial relationships for disabled people. The purpose of this research was to understand how adults with intellectual disability (ID) live with their families as well as with extra-familial peers and to identify their subjective and emotional experiences. Using an interdisciplinary approach including clinical psychology along with sociology – for the networks study – and philosophy – capabilities perspective, 23 adults ID were encountered for this qualitative research. Each of them were (...) met three times to discuss about relationships with their peers: 1/ during a semi-directive interview; 2/ with the Family Apperception Test (Sotile et al., 1988); 3/ with a sociogram. For this research, each tool was adapted in order to support the adults ID’s participation. Two structures were identified and seem to be impacted by the sibling bonds; the schooling career; the subjectivation of the disability. Analysis highlighted the importance of paying attention to the relationships with peers, since childhood to adulthood, by involving families and institutions. (shrink)

For years, the sexual and reproductive health of women with intellectual and developmental disability or disabilities has been insufficiently addressed by institutions and family members due to a lack of information, training, and, sometimes, religious issues. In this context, contraceptive digital pills can enhance the sexual and reproductive control of this population group. Digital pills could help to improve adherence to treatments aimed to prevent unwanted pregnancies, as well as allowing women and their caregivers to exert better drug intake (...) control. However, there are some ethical risks to consider that may outweigh these benefits. This study sets out to explore the ethical considerations that should be taken into account in the case of a potential roll‐out of contraceptive digital pills as a way of improving the sexual and reproductive health of these women. (shrink)

Rehabilitation for disabled children requires long-term programmeswhich are expensive to the family. This study aimed to estimate the costincurred by caregivers’ children with disabilities from Pahang, Terengganu andKelantan participating in Community-Based Rehabilitation and cost of seeking alternative rehabilitation. Costanalysis using the Activity-Based Costing method was used to estimatetwelve-months’ expenditure in 2014 institutional year on 297 caregivers ofchildren with disability, aged 0 to 18 years who attended CBR. Data werecollected using a self-administered costing questionnaire and presentedin median. Results showed that the (...) median direct and indirect costs,excluding medications and alternative care were nearly four times as highin Home-Based compared to Centre-Based vs. RM608. Both groups of caregivers spent a significant amount ofresources on alternative rehabilitation. The high costs incurred for alternativerehabilitation is a major economic burden to the family. (shrink)

The article elaborates on the emergence of a new social category: the “worker incapable of working,” which has not yet been recognized in the scientific literature. In Germany, people excluded from the labour market are increasingly employed in workshops for people with disabilities due to what is defined as a total incapacity to work. In addition to the objective of labour market participation of people with disabilities, these workshops assume the aim of (re)establishing their performance and monitoring their reintegration into (...) the general labour market. Changes in the profiles of people working in the workshops and their recent expansion are described, as well as the transformation of working processes and conditions, especially through digitalisation. The consequences of these transformations are studied within the framework of “activating” policies. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Expose of a BreakdownIngrid HindellIregard my pension as a social wage, and even though I wish it took my disability and the extra costs that brings into consideration, eighteen years ago, I felt privileged to be able to work in the community, not in a sheltered workshop.At this time, a number of us worked voluntarily for numerous little organizations when the government cut their funding and in effect, (...) took away our jobs.It was around this time that I started a “stress cough.” Foolishly, I didn’t take much notice. I was enjoying “life”—studying, working, taking part in a documentary called “Untold Desires” and being a member of the “Friendship Group”—in which a group of us tackled the subject and nature of friendship for people with and without disabilities....The processes and the cohesion of the group brought up a lot of “stuff” for me that I wasn’t able to articulate. It made me question the wisdom of my lifestyle up to then—of marrying a person without a physical disability, for example.My mother used to tell me to tell him to tidy the flat, not in the least realizing that: i) it was distressing that I couldn’t do this; ii) that given all our interests it was difficult to tidy up. (This situation was also not helped, I now realize, by us trying to live and run home businesses from my small three–roomed accommodation behind my parent’s home, without enough support worker hours....)The flat was always cluttered, not conducive to encouraging a feeling of ease in us bringing clients onto the premises. As Robert’s massage workload grew, so did our underlying tension, I see now. And when I was starting to counsel other people with disabilities the situation was made worse....Added to this, my mother had, just prior to this period in our lives, stopped giving us our main meal because we were becoming more and more interested in eating organic and vegetarian food.At the same time, listening to other group members’ stories made me realize how “undervalued” people with disabilities are in society as I had been brought up in a loving extended family and had not long been “out.”It made me realize how much people with disabilities were constrained by lack of governmental funding for recreational—especially relationship options—with each other and with able–bodied people. The government was trying to close down little advocacy organizations that could keep this issue in the forefront of policy makers’ minds. No wonder I was getting close to breaking point! [End Page E1]When I got really bad, my husband almost went mad himself trying to cope with me. I had been the outgoing partner in the relationship for the past 12 years. Now I was getting panic attacks and clinging like poison ivy....And the therapists I went to at that stage didn’t help. The Naturopath was so expensive she made me much worse. She had told a “friend” of Rob’s that she would treat me for $30.00 a time. She did not say that she would present me with an ever– increasing bill every time I had an appointment—to pay her back when I could! And that her admin assistant would keep commenting, in my hearing, that people wouldn’t pay their bills on time.... At last, when the amount got to $450.00, I paid her all my savings, and managed to quit.I now also believe she treated me with a totally inappropriate therapy—colonic irrigation—for far too long, any natural therapist would say nowadays—five weeks!I believe it made my mental state worse. People say that an unquiet mind can stress the body into illness but I believe losing too much weight too fast as I certainly did, stressed my mind, instead of other way around.By this time I wasn’t only having panic attacks. I had slipped into, what I recently discovered, was a clinical depression. This brought in its wake, a terror so real, so all encompassing that I wonder I lived through a day of it—much less four... (shrink)

In this article, we examine disability and eugenics discourses and the ways they function in spaces where vulnerable persons have been historically excluded by the state and blamed for their own “immiseration.” We ask how queer theories of repudiation, abjection, and vulnerability lend insight into the ways that people with intellectual disabilities are discursively located outside normative discourses of home, care, and quality of life, and whether these discourses shifted to serve this vulnerable population when historically the very places (...) in question repudiated them, infringed on their human rights, and questioned their sexuality. To address these questions, we focus on the recent and impending closures of Virginia’s Training Centers, residential institutions for persons with intellectual disabilities now scheduled for staggered closures before 2020. (shrink)

In the fall of 2022, the UN Committee on the Rights of Persons with Disabilities published a set of new “Guidelines on Deinstitutionalization.” This proposal constituted a further element in a long series of controversies around deinstitutionalization policies. It was also part of an international dynamic to institute a new “model of disability,” which is presented as human rights-based. These two processes – the controversy on deinstitutionalization and the institution of a new model of disability – are intertwined and refer (...) to the same semantic field of de/institution/alization. To understand how they relate to each other, we need to distinguish between two registers of meaning, one political, the other analytical. At the intersection of these two registers, this article aims to situate the Committee’s position in the history of UN disability law. We show that the development of that law goes through a process of institution of the “human rights model,” which is inseparable from the process of deinstitutionalization of a previous approach which is symbolized by the figure of the specialized establishment. This socio-legal analysis is based on research in the archives of the United Nations and legal sources, as well as on some twenty interviews. (shrink)

BackgroundMoral Case Deliberation is a specific form of bioethics education fostering professionals’ moral competence in order to deal with their moral questions. So far, few studies focus in detail on Moral Case Deliberation methodologies and their didactic principles. The dilemma method is a structured and frequently used method in Moral Case Deliberation that stimulates methodological reflection and reasoning through a systematic dialogue on an ethical issue experienced in practice.MethodsIn this paper we present a case-study of a Moral Case Deliberation with (...) the dilemma method in a health care institution for people with an intellectual disability, describing the theoretical background and the practical application of the dilemma method. The dilemma method focuses on moral experiences of participants concerning a concrete dilemma in practice. By an in-depth description of each of the steps of the deliberation process, we elucidate the educational value and didactics of this specific method.ResultsThe didactics and methodical steps of the dilemma method both supported and structured the dialogical reflection process of the participants. The process shows that the participants learned to recognize the moral dimension of the issue at stake and were able to distinguish various perspectives and reasons in a systematic manner. The facilitator played an important role in the learning process of the participants, by assisting them in focusing on and exploring moral aspects of the case.DiscussionThe reflection and learning process, experienced by the participants, shows competency-based characteristics. The role of the facilitator is that of a Socratic teacher with specific knowledge and skills, fostering reflection, inquiry and dialogue.ConclusionThe specific didactics of the dilemma method is well suited for teaching bioethics in clinical settings. The dilemma method follows an inductive learning approach through a dialogical moral inquiry in which participants develop not only knowledge but also skills, attitude and character. The role of a trained facilitator and a specific view on teaching and practicing ethics are essential when using the dilemma method in teaching health care professionals how to reflect on their own moral issues in practice. (shrink)

Internationally, the prevalence of clinical ethics support (CES) in health care has increased over the years. Previous research on CES focused primarily on ethics committees and ethics consultation, mostly within the context of hospital care. The purpose of this article is to investigate the prevalence of different kinds of CES in various Dutch health care domains, including hospital care, mental health care, elderly care and care for people with an intellectual disability. A mixed methods design was used including two (...) survey questionnaires, sent to all health care institutions, two focus groups and 17 interviews with managing directors or ethics support staff. The findings demonstrate that the presence of ethics committees is relatively high, especially in hospitals. Moral case deliberation (MCD) is available in about half of all Dutch health care institutions, and in two-thirds of the mental health care institutions. Ethics consultants are not very prominent. A distinction is made between explicit CES forms, in which the ethical dimension of care is structurally and professionally addressed and implicit CES forms, in which ethical issues are handled indirectly and in an organic way. Explicit CES forms often go together with implicit forms of CES. MCD might function as a bridge between the two. We conclude that explicit and implicit CES are both relevant for clinical ethics in health care. We recommend research regarding how to combine them in an appropriate way. (shrink)

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

While copious quantities of ink have been spilled on the topic of autonomy in the context of health care, little has been written about autonomy in relation to intellectual disability. After presenting the received account of capacity, we argue that it cannot account for the moral permissibility of limiting an individual with intellectual disability’s access to diet soda. In cases of preventative medicine and intellectual disability, the philosophical motivation for the received account of capacity is incompatible with (...) the actions it recommends. We consider and reject several potential solutions; then, drawing on applied behavior analysis and the phenomenon of automatic reinforcement, we propose our own solution. The article concludes by considering the broader implications of our discussion. (shrink)

The social contract tradition has been critiqued for harboring ‘domination contracts’ that exclude women, people of color, people with disabilities, and others from political life. In this article, I build on these critical analyses to argue that the liberal ideal of the reasoning and speaking citizen entails the anti-democratic disqualification of ‘silent’ citizens such as young children and many peoples with intellectual disabilities. The liberal veneration of voice and the corollary vilification of silence represent the internal logic of all (...) domination contracts, since it is by comparison to silent children and peoples with disabilities that groups such as women and people of color are viewed as justifiably excluded. I identify two distinct but interacting forms of liberal disqualification: (1) contingent domination contracts, which can be potentially disputed and temporarily resolved by proving a group’s fulfilment of the qualifications of speech and reason; and (2) structural domination contracts, which cannot be resolved for ‘silent’ citizens. Moreover, any viable challenge to a contingent domination contract must centre on the democratic inclusion of silent citizens, which itself will require the reconceptualization and redesign of political processes, as well as workplaces, economies, and other social institutions. (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)

This paper focuses on a hypothetical case that represents an intervention request familiar to those who work with individuals with intellectual disability. Stacy has autism and moderate intellectual disability. Her parents have requested treatment for her hand flapping. Stacy is not competent to make her own treatment decisions; proxy consent is required. There are three primary justifications for proxy consent: the right to an open future, substituted judgment, and the best interest standard. The right to an open future (...) justifies proxy consent on the assumption of future autonomy whereas substituted judgment justifies proxy consent via reference to past autonomy. Neither applies. Stacy has not been, nor will she be, competent to make her own treatment decisions. The best interest standard justifies proxy consent on the grounds of beneficence. It is unlikely that hand flapping harms Stacy. None of the three primary means of justifying proxy consent apply to Stacy’s case. (shrink)

Resumo: Este texto origina-se de uma pesquisa realizada em quatro universidades federais brasileiras, cujo objetivo foi analisar as narrativas de diversos profissionais sobre os processos de aprendizagem dos estudantes com deficiência intelectual na Educação Superior. Foram realizadas 29 entrevistas com 32 servidores públicos, sendo profissionais dos Núcleos de Acessibilidade, profissionais de apoio pedagógico, professores e coordenadores de cursos. As entrevistas foram gravadas, transcritas e analisadas através da técnica de Análise Textual Discursiva e fundamentadas pelos estudos de Lev Semionovitch Vigotski. Os (...) resultados indicam que a aprendizagem dos estudantes com deficiência intelectual na Educação Superior está relacionada aos seguintes fatores: estratégias utilizadas pelos estudantes para a compensação da deficiência; a coletividade que também atua para compensação da deficiência, favorecendo o desenvolvimento das funções psíquicas superiores; a mediação dos professores através da adoção de diferentes estratégias pedagógicas. Conclui-se que há possibilidades para a aprendizagem dos estudantes com deficiência intelectual na Educação Superior desde que haja estratégias institucionais e pedagógicas e que o grau do comprometimento intelectual do estudante não impossibilite a compensação e a aprendizagem, mediada pela colaboração, na zona de desenvolvimento proximal/imediato/iminente. Palavras-chave: Deficiência Intelectual; Educação Superior; Vigotski. Possibilities for learning students with Intellectual Disabilities in Higher Education: an analysis from Vigotski's studies This text originates from a research conducted in four Brazilian federal universities, whose objective was to analyze the narratives of several professionals about the learning processes of students with intellectual disabilities in Higher Education. Twenty-nine interviews were conducted with 32 public servants, being professionals from accessibility centers, pedagogical support professionals, teachers and course coordinators. The interviews were recorded, transcribed and analyzed using the Discursive Textual Analysis technique and based on the studies of Lev Semionovitch Vigotski. The results indicate that the learning of students with intellectual disabilities in Higher Education is related to the following factors: strategies used by students to compensate for disability; the collectivity that also acts to compensate for disability, favoring the development of higher psychic functions; mediation of teachers through the adoption of different pedagogical strategies. It is concluded that there are possibilities for learning students with intellectual disabilities in Higher Education provided that there are institutional and pedagogical strategies and that the degree of intellectual commitment of the student does not make compensation and learning impossible, mediated by collaboration, in the zone of proximal/immediate/imminent development. Key-words: Intellectual Disability; Higher Education; Vigotski. Posibilidades para la aprendendizaje de estudiantes con discapacidad intelectual en la Educación Superior: un análisis de los estudios de Vigotski Resumen: Este texto tiene su origen en una investigación realizada en cuatro universidades federales brasileñas, cuyo objetivo era analizar las narrativas de varios profesionales sobre los procesos de aprendizaje de estudiantes con discapacidad intelectual en educación superior. Se realizaron 29 entrevistas con 32 servidores públicos, siendo profesionales de centros de accesibilidad, profesionales de apoyo pedagógico, profesores y coordinadores de cursos. Las entrevistas fueron grabadas, transcritas y analizadas utilizando la técnica de análisis textual discursivo y basadas en los estudios de Lev Semionovitch Vigotski. Los resultados indican que el aprendizaje de los estudiantes con discapacidad intelectual en la Educación Superior está relacionado con los siguientes factores: estrategias utilizadas por los estudiantes para compensar la discapacidad; la colectividad que también actúa para compensar la discapacidad, favoreciendo el desarrollo de funciones psíquicas superiores; mediación del profesorado a través de la adopción de diferentes estrategias pedagógicas. Se concluye que existen posibilidades de aprender a estudiantes con discapacidad intelectual en Educación Superior siempre que existan estrategias institucionales y pedagógicas y que el grado de compromiso intelectual del estudiante no imposibilite la compensación y el aprendizaje, mediado por la colaboración, en la zona de desarrollo proximal/ inmediato/inminente. Palabras clave: Discapacidad intelectual; Enseñanza Superior; Vigotski. Data de registro: 22/03/2022 Data de aceite: 27/04/2022. (shrink)

In this essay, I home in on the difficulties with group-to-individual (G2i) inferences in neuroscience and how they impact the legal system. I briefly outline how cognitive shortcutting can distort legal decisions, and then turn my attention to G2i inferences, with a special focus on issues of intellectual disability and brain damage. I argue that judges and juries are not situated to appreciate the nuances in brain data and that they are required to make clinical decisions without clinical training. (...) As a result, they effectively ignore those responsibilities and simply decide cases in virtue of what they already believe to be true. How judges actually make decisions in highstakes criminal cases is troubling, but they are also hamstrung in a variety of ways. (shrink)

In ‘Liberal individualism and Deleuzean Relationality,’ Clegg, Murphy, and Almack argue that the ability to choose has become something of a dogma in the management of intellectual disability, and one that sits badly with the heterogeneity of those with intellectual disabilities. They argue for a move away from choice as the primary ethical category to an ethics of relationality, following from the work of Deleuze and Guattari, to offer a more nuanced and stable form of care. In this (...) commentary, I set out the theoretical considerations that Deleuze and Guattari take to underlie such an ethics, and then briefly question the focus of their uptake of Deleuze and Guattari. Although Deleuze and Guattari may... (shrink)

Medicalization is the process by which conditions, for example, intellectual disability, hyperactivity in children, and posttraumatic stress disorder, become understood as medical disorders. During this process, the medical community often collectively assigns a label to a condition and consequently to those who would be said to have the disorder. We argue that there are at least two previously overlooked ways in which this linguistic practice may be wrongful, and sometimes, unjust: first, when the initial introduction of a medical label (...) is done without the participation of those individuals who are being labelled, and second, when attempts by those individuals to renegotiate the labels are thwarted or otherwise rendered ineffective. In both cases, we argue, individuals are unfairly excluded from a linguistic practice that would be valuable for them to participate in. Furthermore, we argue that their exclusion depends in part on the authority of the medical institution to ignore their demands for participation. In making this case, we will propose the more general claim that participating in the linguistic processes of determining and renegotiating the words that will be used to describe oneself is an exercise of linguistic agency, a capacity that has both instrumental and intrinsic value. (shrink)

Dehumanization Studies is a burgeoning field that has much to teach Critical Disability Studies and philosophers of disability. Conversely, a critical disability perspective can inform and challenge theoretical approaches to dehumanization. This paper attempts to forge a conversation between these interdisciplinary areas by exploring the phenomenon of dehumanization in relation to people with intellectual disabilities. It begins with a definition of disability dehumanization, and then explores the ways in which this form of dehumanization functions dynamically at multiple levels, drawing (...) from the history of ID and contemporary examples in moral philosophy. Ultimately it argues that it is essential to recognize the moral relevance of being human in order to challenge and prevent forms of disability dehumanization and de­fends this idea in the face of two objections (speciesism and posthumanism). (shrink)

Intellectual disabilities make people vulnerable to marginalization in churches and social spaces, but theology has not sufficiently attended to the topic and promoted the flourishing of people who have cognitive impairments. This article responds to theology's inadequate attention to intellectual disability and historical resources for reflection on the topic by reading medieval sources with intellectual disability in mind. I argue that Bonaventure's Itinerarium Mentis in Deum provides a model for imagining intellectually disabled and nondisabled people sharing the (...) journey into God and that Eckhart's view of intellect as the uncreated element in the soul includes people who are intellectually disabled among those who may be united with God. (shrink)

This article engages with debates concerning the moral worth of human beings with profound intellectual and multiple disabilities (PIMDs). Some argue that those with such disabilities are morally less valuable than so-called normal human beings, whereas others argue that all human beings have equal moral value and so each group of humans ought to be treated with equal concern. We will argue in favor of a reconciliatory view that takes points from opposing camps in the debates about the moral (...) worth of humans with PIMDs. The view in question, roughly, is this: most humans with PIMDs are persons in the morally significant sense and so deserve equal moral consideration to so-called normal human beings. Some humans with PIMD may not, however, be persons, but nevertheless deserve equal moral consideration to persons because they stand in a special relation to persons. (shrink)

In a challenge to current thinking about cognitive impairment, this book explores what it means to treat people with intellectual disabilities in an ethical manner.

This essay explores various roles that philosophers occupy in relation to intellectual disability. In examining how philosophers define their object of inquiry as experts and gatekeepers, it raises critical questions concerning the nature of philosophical discourse about intellectual disability. It then goes on to consider three alternate positions, the advocate or friend, the animal, and the “intellectually disabled,” each of which points to new ways of philosophizing in the face of intellectual disability.

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)

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)

The historical-cultural theory of Intellectual Disability overcompensation/compensation is referenced in several studies, but little empirical evidence is presented to corroborate this thesis. In this work, 13 current studies were analysed about the behavioural profile of people with Down syndrome, a case of neurobiological ID, published in the last 15 years, in order to verify the possibility of dialogue with the theorizing about compensation. Despite contributing to an up to date understanding of DS, the results point to similarities between different (...) scientific traditions allowing discussions regarding methodologies, data interpretation, language comprehension, and the impact of the studies for school inclusion and the development of people with ID/DS. It is concluded that the theorization in question is pertinent to developmental studies, dialogues with other perspectives and that its progress depends on investigations directed to the affective motivators/emotions of the person with ID/DS by means of more interpretative methodologies. Keywords: Down syndrome, compensation, behavioural profile, Intellectual Disabilities Development. (shrink)

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

Social contract theories generally predicate the authority of rules that govern society on the idea that these rules are the product of a contractual agreement struck between members of society. These theories embody values, such as equality, reciprocity and rationality, that are highly prized within our culture. Yet a closer inspection reveals that these features exclude other important values, relations and even persons from the realm of contractual morality and justice, especially people with severe intellectual disabilities. Jonas-Sébastien Beaudry explores (...) the moral status of intellectually disabled people in social contract thought and argues that this tradition needs to be revisited to include the most vulnerable. Addressing this problem will have concrete repercussions in law and policy, because many issues that people with disabilities face are connected to deeply rooted assumptions about their status as full citizens or full members of our moral, political and legal communities. (shrink)

The moral status accorded to an individual (or class of individuals) helps to account for the weight of the moral obligations considered due to an individual (or class of individuals). Strong arguments can be given to indicate that the moral status accorded, justly or unjustly, to individuals with intellectual disabilities is less than that accorded to those considered intellectually able. This paper suggests that such a view of the moral status of intellectually disabled individuals derives from individualism. Ontological and (...) normative components of individualism are identified. It is shown that individualistic, ontological criteria for personhood compromise the integrity of “dependent” individuals. And it is shown that the normative component of individualism further compromises the integrity of intellectually disabled individuals. An alternative view of the self is outlined in which dependence features centrally. It is tentatively suggested that such a view of the self may prove more congenial to enhancing the moral status of individuals with intellectual disabilities. (shrink)

Traditional welfare states were based on passive solidarity. Able bodied, healthy minded citizens paid taxes and social premiums, usually according to a progressive taxation logic following the ability to pay principle. Elderly, fragile, weak, unhealthy and disabled citizens were taken care of in institutions, usually in quiet parts of the country. During the nineteen eighties and nineties of the twentieth century, ideas changed. Professionals, patients and policy makers felt that it would be better for the weak and fragile to live (...) in mainstream society, rather than be taken care of in institutions outside society. This might be cheaper too. Hence policy measures were taken to accomplish deinstitutionalization. This article discusses the implications of deinstitutionalization for distributive justice. It is argued that the weakest among the weak and fragile stand to lose from this operation. For able bodied citizens deinstitutionalization entails a move from passive to active solidarity. Rather than just pay taxes they have to actively care for and help the needy themselves. The move from passive to active solidarity tends to take advantage of benevolent citizens and burden the socioeconomically disadvantaged. This may be a reason to reconsider the policy move toward deinstitutionalization. (shrink)

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