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)

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)

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)

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

This chapter contains sections titled: Introduction Investing in Science: Child Health and U.S. Medicine in the Twentieth Century The Impact of Specific Medical Interventions The Changing Definition of ID The “Flynn Effect” and the Impact of Improved Public Health Conclusion References.

This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential policy (...) solutions. (shrink)

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

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical (...) model and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities related to their information privacy when using information technology. Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in (...) situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but (...) not in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a (...) compelling vision: the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

This chapter contains sections titled: Introduction Definition of Disability Causes of Intellectual Impairment Evolving Terminology for Intellectual Impairment The Bell Curve and IQ: Levels of Intellectual Disability Cognitive Developmental Thresholds Intellectual Disability and the Brain: Fluid and Crystallized Intelligence Neuroplasticity in Brain Development Developmental Perspective on Intellectual Disability: Cognitive Developmental Thresholds Moral Development Implications of Recognizing Personhood and Autonomy Participation in Research Summary References.

This essay explores the boundaries of the moral community—the collection of agents eligible for moral responsibility—by focusing on those just inside it and those just outside it. In particular, it contrasts mild mental retardation with psychopathy, specifically among adults. For those who work with and know them, adults with mild mental retardation are thought to be obvious members of the moral community (albeit not full-fledged members). For those who work with and theorize about adult psychopaths, by contrast, they are not (...) members of the moral community (albeit not in such a full-fledged fashion as the insane). Both psychopaths and adults with MMR have a disability, and the essay is interested in how disability sometimes exempts one from the moral community and sometimes doesn't. It will be through two associated puzzles that we will eventually come to see the complicated tripartite relation between disability, responsibility, and moral community. (shrink)

Augmentative and alternative communication systems have been successfully used to help pupils with intellectual and developmental disabilities for functional communication skills. Whereas the effects of the GoTalk NOW application available on the iPad have been investigated, no such study has been conducted in Saudi Arabia. This study investigated the effects of the “model, lead, and test” technique paired with the GoTalk NOW app, which is used to teach four children with intellectual and developmental delays to correctly (...) request. The participants were four children from 6 to 8 years of age with intellectual and developmental disabilities. A multiple baseline design was implemented across all participants. All four participants made clear progress using the GoTalk NOW app on the iPad, and implementation of the MLT technique was successful in helping the participants request correctly and independently. This study provided a practical, effective, and easy-to-use method for special education teachers to teach children with disabilities. It contributes to expand the range of teaching options for children with intellectual and developmental disabilities. (shrink)

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

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)

Children with developmental language disorder (DLD) have significant deficits in language ability that cannot be attributed to neurological damage, hearing impairment, or intellectual disability. The symptoms displayed by children with DLD differ across languages. In English, DLD is often marked by severe difficulties acquiring verb inflection. Such difficulties are less apparent in languages with rich verb morphology like Spanish and Italian. Here we show how these differential profiles can be understood in terms of an interaction between properties (...) of the input language, and the child's ability to learn predictive relations between linguistic elements that are separated within a sentence. We apply a simple associative learning model to sequential English and Spanish stimuli and show how the model's ability to associate cues occurring earlier in time with later outcomes affects the acquisition of verb inflection in English more than in Spanish. We relate this to the high frequency of the English bare form (which acts as a default) and the English process of question formation, which means that (unlike in Spanish) bare forms frequently occur in third‐person singular contexts. Finally, we hypothesize that the pro‐drop nature of Spanish makes it easier to associate person and number cues with the verb inflection than in English. Since the factors that conspire to make English verb inflection particularly challenging for learners with weak sequential learning abilities are much reduced or absent in Spanish, this provides an explanation for why learning Spanish verb inflection is relatively unaffected in children with DLD. (shrink)

This Introduction to the collection of essays surveys the philosophical literature to date with respect to five central questions: justice, care, agency, metaphilosophical issues regarding the language and representation of cognitive disability, and personhood. These themes are discussed in relation to three specific conditions: intellectual and developmental disabilities, Alzheimer's disease, and autism, though the issues raised are relevant to a broad range of cognitive disabilities. The Introduction offers a brief historical overview of the treatment cognitive disability (...) has received from philosophers, and explains the specific challenges that cognitive disability poses to philosophy. In briefly summarizing the essays in the collection, it highlights the distinctive contributions the collection makes to ethics, political philosophy, bioethics, and the philosophy of disability. We hope that the richness of the topics explored by these essays will be a spur to further investigation. (shrink)

“Additional needs children” is a term often used in the education system to describe children with school-based problems characterised by learning difficulties arising from academic, social and emotional stressors including, but not limited to, clinically diagnosed Neurodevelopmental Disorders (NDD). What has seldom been investigated is what biopsychosocial characteristics and other common comorbid behaviours are associated with academic learning difficulties. Thus, the aim of this study was to investigate the relationship between anxiety levels (Spence Children’s Anxiety Scale- Parent Report), autism traits (...) (Autism Spectrum Quotient – Child Version) and sleep quality (Sleep Disturbance Scale for Children) in ‘additional needs children’ with a diagnosis of Autism Spectrum Disorder (ASD), Language Impairment or Mixed Diagnosis without an intellectual disability. The results demonstrated that the ASD group reported more impairments associated with comorbid anxiety and sleep compared to the other clinically diagnosed groups. Similarly, greater anxiety level was positively associated with a greater number of autism traits and poorer sleep quality regardless of diagnostic group. This suggests that higher anxiety symptoms are a core biomarker of children who often first come to their teacher’s attention with reading and learning difficulties (i.e. “additional needs”), irrespective of the primary cause of school-based problems. (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)

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.

Heterogeneous nuclear ribonucleoprotein U (HNRNPU) is a nuclear protein that plays a crucial role in various biological functions, such as RNA splicing and chromatin organization. HNRNPU/scaffold attachment factor A (SAF‐A) activities are essential for regulating gene expression, DNA replication, genome integrity, and mitotic fidelity. These functions are critical to ensure the robustness of developmental processes, particularly those involved in shaping the human brain. As a result, HNRNPU is associated with various neurodevelopmental disorders (HNRNPU‐related neurodevelopmental disorder, HNRNPU‐NDD) characterized by (...) class='Hi'>developmental delay and intellectual disability. Our research demonstrates that the loss of HNRNPU function results in the death of both neural progenitor cells and post‐mitotic neurons, with a higher sensitivity observed in the former. We reported that HNRNPU truncation leads to the dysregulation of gene expression and alternative splicing of genes that converge on several signaling pathways, some of which are likely to be involved in the pathology of HNRNPU‐related NDD. (shrink)

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)