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)

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)

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)

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)

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)

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)

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)

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)

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)

The literature on epistemic injustice currently displays a logocentric or propositional bias that excludes people with intellectual disabilities from the scope of epistemic agency and the demands of epistemic justice. This paper develops an account of epistemic agency and injustice that is inclusive of both people with and people without intellectual disabilities. I begin by specifying the hitherto undertheorized notion of epistemic agency. I develop a broader, pluralist account of epistemic agency, which relies on a conception of knowledge (...) that accounts not only for propositional knowing, but also for other types of knowing that have been largely neglected in debates on epistemic injustice and agency. Based on this pluralist account of epistemic agency, I then show that people with intellectual disabilities qualify as epistemic agents and therefore as subjects of epistemic justice. Finally, I argue that this pluralist account of epistemic agency pushes us to revisit the current conception of epistemic injustice and to expand its taxonomy in two important ways. (shrink)

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.

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 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)

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: The Expert or Gatekeeper Family Member or Advocate The Nonhuman Animal The “Intellectually Disabled” References.

Drawing on the built environment concept of “inclusive design” and its emphasis on creating accessible environments for all persons regardless of ability, I suggest that a central task for feminist disability theory is to redesign foundational philosophical concepts to present opportunities rather than barriers to inclusion for people with disability. Accounts of autonomy within liberal philosophy stress self-determination and the dignity of all individual persons, but have excluded people with intellectual disability from moral and political theories (...) by denying their capacity for individual autonomy, seen as a chief marker of moral personhood. This paper modifies and extends feminist theories of relational autonomy by arguing for the need to view autonomy as a feature of persons that is manifested only through relations of support, advocacy, and enablement. An “inclusively designed,” relational account negotiates the tensions encountered in attempts to apply autonomy to people with high support needs, and politicizes the concept as an advocacy tool for people with intellectual disability and their allies. (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)

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)

Canadian children’s literature rarely depicts characters labelled with intellectual disabilities, yet when it does it often remains mired in stereotypes that recycle prevalent myths and misconceptions. Even as more recent literature attempts to push back against such stereotypes, it nevertheless predominantly remains caught in these dangerous representational repertoires. This article offers a brief history of Canadian literary depictions of intellectual disability and a critique of the Canadian publishing spheres. Through a critical analysis of Lorna Schultz Nicholson’s book (...) Fragile Bones, we discuss the limits of representation of intellectual disability in children’s fiction. We also offer a critique of the ableist publishing climate in Canada and suggest that structural barriers prevent disabled writers from entering the literary marketplace on an equal playing field. These barriers to publishing lead to the vast underrepresentation of disabled authors and the misrepresentation of disability in general and intellectual disability in particular in Canadian children’s literature. (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)

Joan Tronto defines care by three activities: maintaining, continuing, and repairing. These activities give care a maintenance quality, which is problematic given that caring often takes place within contexts of inequality and domination. Empirical research with paid support staff and people with intellectual and developmental disabilities (IDD) illustrate these problems: care practices tend to reinforce the social exclusion of people with IDD, particularly for people with challenging behavior. Yet, support workers’ care practices can facilitate a better quality of life (...) for people with IDD. This improved style of support maps onto Tronto’s fifth phase of care, caring with, which hinges practices of care on democratic principles of justice, equality, and freedom. As such, democratic care requires activities that Tronto excludes from care, including creativity, disruption, and pleasure. I use empirical research from the field of IDD to show how support workers and people with IDD practice creative, disruptive, and playful care to challenge persistent forms of exclusion, inequality, and stigma. (shrink)

Who should be diagnosed with intellectual disability and who should not? For borderline cases, the answer to this question may be as difficult to decide on as determining the borderline between being bald or not. While going bald may be upsetting to some, it is also an inevitable and relatively undramatic course of nature. In contrast, getting a diagnosis of intellectual disability is likely to have more far-reaching consequences. This makes the question of where the cutoff (...) point for intellectual disability lies more imperative. Philosophy of science may help psychologists to understand the nature of this dilemma in a more profound manner. This article builds on the sorites paradox to explore the vagueness that surrounds the concept of intellectual disability and the consequences of this vagueness for the diagnostic process. While epistemicists argue that vagueness is a consequence of our limited knowledge of the world that we live in, semantic theorists claim that there is nothing that we do not know, but that our language allows for indecisiveness. What these different lines of understanding mean for psychologists who are diagnosing intellectual disability, is described in this article. Furthermore, the article discusses practical implications of these philosophical underpinnings. (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)

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)

Consider: You can save either a human or a normal adult dog from a burning building (with no risk to yourself and at little cost), but not both. However, the human is a human with a severe intellectually disability (or, as we shall say, a “SID”). -/- Which one should you save? There is disagreement in the literature about which this issue. Two opposing camps exist, which we call “the intrinsic property camp ” and “the special relations camp.” Those (...) in the intrinsic property camp think that in most cases it is equally permissible to save either the dog or the human, and that in fact in some cases you should save the dog and not the human. Those in the special relations camp, by contrast, maintain that you should always save the human and not the dog. There is disagreement between these two camps about the answer to this question because there is disagreement between them about the moral significance of SIDs. Those in the intrinsic property camp believe that the moral value of a human with a SID is equal to (and in some cases less than) the moral value of a nonhuman animal such as a dog. (They thus believe that the value of a human with a SID is strictly less than the value of a normal adult human.) Those in the special relations camp believe that the value of a human with a SID is strictly higher than the value of a nonhuman animal. (But they are not thereby committed to, but may nonetheless believe, that a human with a SID has equal moral value to a normal adult human.) The questions we address in this chapter include: 1. Why do those in each camp hold the view that they do? 2. Which camp is right? (shrink)

This review essay considers three recent studies at the intersection of theology and intellectual disability. All three authors work out constructive proposals against a background of literature in which Nancy Eiesland and Stanley Hauerwas are central. Each explores the nature of intellectual disability through interdisciplinary study and draws this work into conversation with classical Christian theology. The essay welcomes these three books, and also suggests ways in which their constructive proposals might be strengthened. In particular, their (...) use of resources within late ancient Christian tradition fails to take into account some of the doctrinal formulations most congenial to their projects. (shrink)

Respect for autonomy grounds common ethical judgments about why people should be allowed to make decisions for themselves. Under this assumption, it is concerning that a number of feminist conceptions of autonomy present challenges for people with intellectual disabilities. This paper explores some of the most philosophically influential feminist accounts of autonomy and demonstrates how these accounts exclude persons with intellectual disabilities. As a possible solution to these accounts, Laura Davy’s inclusive design approach is presented, which is a (...) revised conception of autonomy that accommodates intellectual disabilities. While Davy’s approach to autonomy views people with intellectual disabilities as autonomous, it encounters limitations in regard to sexual autonomy, which incorporates certain judgments that are intuitively at odds with her recommendations. The remainder of this paper describes some complexities of sexual autonomy and determines why these are problematic for Davy’s account. After analyzing some of the challenges that sexual autonomy presents, I suggest a potential modification for consideration. This modification will allow Davy’s account to address the topic of sexual autonomy for persons with intellectual disabilities. My proposal is a matter of theory following practice. (shrink)

As a starting point, Clegg, Murphy, and Almack contend that frameworks of policy fail both to engage with ethical theory and to fit with the complex realities of how services are delivered. Both of these points are well-supported both in their engagement with literature and in the research presented. Their Deleuzoguattarian analysis and Deleuzean ethical alternatives provide fresh and challenging insights. The key question in this rejoinder is whether their critique goes too far, or not far enough. To begin, however, (...) it is worth making a comment on terminology. Clegg et al. begin with a passing comment to the effect that ‘intellectual disability’ was ‘formerly learning disability in the UK and... (shrink)

The mere difference view, endorsed by some philosophers and Christian scholars, claims that disability by itself does not make a person worse off on balance—any negative impacts on overall welfare are due to social injustice. This article defends the bad difference view—some disability is bad not simply because of social arrangements but because of biological deficits that, by themselves, make a person worse off. It argues that the mere difference view contradicts core doctrines of Christian faith. The analysis (...) focuses on intellectual rather than physical or sensory disabilities. (shrink)

The mere difference view, endorsed by some philosophers and Christian scholars, claims that disability by itself does not make a person worse off on balance—any negative impacts on overall welfare are due to social injustice. This article defends the bad difference view—some disability is bad not simply because of social arrangements but because of biological deficits that, by themselves, make a person worse off. It argues that the mere difference view contradicts core doctrines of Christian faith. The analysis (...) focuses on intellectual rather than physical or sensory disabilities. (shrink)

The common belief is that disability is bad for the person who is disabled, that it has a negative effect on well-being. Some disability rights activists and philosophers, however, assert that disability has little or no impact on how well a person’s life goes, that it is neutral with respect to flourishing. In recent articles Stephen Campbell and Joseph Stramondo, while rejecting both views, claim that we cannot make any broad generalizations about the effect of disability (...) on well-being. Whether they are right about physical and sensory disabilities, I do not know, but I argue that they are wrong about intellectual disabilities. A broad generalization about intellectual disabilities is justified: it always has a negative impact on quality of life, even though there is no single negative impact. The disadvantages of ID are plain but complicated. (shrink)

The study examines the employment experience of workers with intellectual disability in the hotel sector in Australia. Through a qualitative case study, we interviewed managers and WWID, and held focus groups with supervisors and colleagues at three hotels. We have used the theoretical framework of corporate social responsibility to investigate HR practices that create an ethical climate which promote authentic work experiences for WWID. The study found that participative work practices provide evidence of how WWID fit in at (...) the workplace. When workers are confronted with work-related anxieties, the pragmatic nature of existential authenticity becomes a reality. Our findings reveal that managing workers ethically can lead to more authentic work experiences. In turn, this may promote social inclusion of WWID and improve their reported well-being. (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)

Intellectual disability leads to a loss of autonomy and a high level of dependence, requiring support from another person permanently. Therefore, it is necessary to incorporate the assessment of caregiver burden in healthcare actions, to avoid putting the health of caregivers and patients at risk. In this sense, the study aimed to analyze the internal structure of the Zarit Burden Interview (ZBI) in a sample of caregivers of people with intellectual disabilities, to provide convergent and discriminant evidence (...) with a measure of the risk of maltreatment, and to estimate the reliability of the scores from the Classical Test Theory and the Rasch Measurement Theory. The study was instrumental. The sample consisted of 287 Peruvian informal primary caregivers of persons diagnosed with intellectual disabilities. To collect validity evidence, the internal structure (confirmatory factor analysis, CFA) and the relationship with other variables (convergent and discriminant evidence) were used, while reliability was estimated through the omega coefficient and Rasch analysis. The internal structure of the ZBI corroborated a unidimensional structure. In terms of convergent and discriminant evidence, the scale presents adequate evidence. Reliability levels were also good. Previously, the psychometric properties of the ZBI have not been studied in caregivers of people with intellectual disabilities, and it represents the first study of the scale in Peru. The results obtained will allow the use of this scale to design actions in the work with caregivers and studies to understand the psychology of the caregiver. (shrink)

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

This article questions the reason behind ethics in caregiving services for people with serious intellectual disabilities, the reasons changes have taken place in medicine, in the kinds of illnesses, social changes and changes in how hospitality is envisioned, which lead us to reconsider the usual way of doing things, the traditional morals on which their treatment has been based. However, the traditional ways of dealing with those disabled individuals have also become obsolete and are ethically reproachable: based on charity (...) and beneficence, goodwill and paternalism, if not on ignorance and vulnerability. (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 (...) class='Hi'>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)

Many mothers with intellectual disabilities lose their parental rights due to child welfare (CW) concerns. Despite the growing interdisciplinary scholarship on parenting with intellectual disabilities, there is scant research that has explored the discursive practices embedded within CW or family courts involving mothers with intellectual disabilities. The aim of this study is to explore portrayals of mothering with intellectual disability in CW court reports filed in Québec, Canada. A three-level critical discourse analysis was performed, focusing (...) on 10 reports that were retrieved from a publicly available legal database, and their larger discursive societal context. Analysis highlighted unequal power relations as discursive practice underpinned by the following discursive patterns: (1) The ideal caregiver vs the unfit mother (2) Devalued voices of mothers with intellectual disability (3) Professionals as holding authoritative knowledge and (4) Decision-making based on the best interest of the child. Revealing the hidden ideological assumptions embedded in discourse can help to challenge and confront injustice faced by mothers with intellectual disability within the CW system. (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)

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should (...) intellectual disability be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect. (shrink)