Disabled‐2 (Dab2) is a multimodular scaffold protein with signaling roles in the domains of cell growth, trafficking, differentiation, and homeostasis. Emerging evidences place Dab2 as a novel modulator of cell–cell interaction; however, its mode of action has remained largely elusive. In this review, we highlight the relevance of Dab2 function in cell signaling and development and provide the most recent and comprehensive analysis of Dab2's action as a mediator of homotypical and heterotypical interactions. Accordingly, Dab‐2 controls the extent of (...) platelet aggregation through various motifs within its N‐terminus. Dab2 interacts with the cytosolic tail of the integrin receptor blocking inside‐out signaling, whereas extracellular Dab2 competes with fibrinogen for integrin αIIbβ3 receptor binding and, thus, modulates outside‐in signaling. An additional level of regulation results from Dab2's association with cell surface lipids, an event that defines the extent of cell–cell interactions. As a multifaceted regulator, Dab2 acts as a mediator of endocytosis through its association with the [FY]xNPx[YF] motifs of internalized cell surface receptors, phosphoinositides, and clathrin. Other emerging roles of Dab2 include its participation in developmental mechanisms required for tissue formation and in modulation of immune responses. This review highlights the various novel mechanisms by which Dab2 mediates an array of signaling events with vast physiological consequences. (shrink)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more specific clusters (...) of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

This essay argues that the systemic turn in deliberative democracy has opened up avenues to think about disabled citizenship within discursive processes. I highlight the systemic turn’s recognition of the interdependence of individuals and institutions upon each other in a system as key to this project. This recognition has led to three transformations: (1) a more generous account of deliberative speech acts and behaviors; (2) recognition of the role of enclaves; and (3) incorporating the role of discursive representatives. These (...) changes normalize the participation of cognitively disabled individuals and suggest institutional opportunities for more effective participation. (shrink)

A growing, interdisciplinary field of cognitive linguistics has developed in recent decades, bringing together research from many fields to explore the ways that metaphors provide structure and semantic content to thought and language. In this article, the American public school disability emotional/behavioral disorder (E/BD) is examined in regard to the primary metaphors that frame the basic concepts of the disorder. The metaphors of 2 versions of E/BD, psychodynamic and behavioral, are investigated. A series of critical questions about the E/BD construct (...) are posed, and possibilities for new metaphors are proposed. (shrink)

People accept conclusions of valid conditional inferences (e.g., if p then q, p therefore q) less, the more disablers (circumstances that prevent q to happen although p is true) exist. We investigated whether rules that through their phrasing exclude disablers evoke higher acceptance ratings than rules that do not exclude disablers. In three experiments we re-phrased content-rich conditionals from the literature as either universal or existential rules and embedded these rules in Modus Ponens and Modus Tollens inferences. In Experiments 2 (...) and 3, we also used abstract rules. The acceptance of conclusions increased when the rule was phrased with “all” instead of “some” and the number of disablers had a higher impact on existential rules than on universal rules. Further, the effect of quantifier was more pronounced for abstract rules and when tested within subjects. We discuss the relevance of phrasing, quantifiers and knowledge on reasoning. (shrink)

The Life Worth Living investigates the exclusion of and discrimination against disabled people across the history of Western moral philosophy. -/- Table of Contents: Introduction: The Ableist Conflation. Part I: Pain. 1. Theories of Pain. 2. A Phenomenology of Chronic Pain. Part II: Disability. 3. Theories of Disability. 4. A Phenomenology of Multiple Sclerosis. Part III: Ability. 5. Theories of Ability. 6. A Phenomenology of Ability. Conclusion: An Anti-Ableist Future.

Since the early 1990s, one of the most prominent objections to the use of prenatal or pre-implantation testing to prevent the birth of children with disabilities has focused on the negative judgments it expresses to and about existing persons with disabilities. Commonly known as the expressivist objection, it is based on the conjunction of two key claims: (1) the use or provision of tests to select against disability in offspring expresses negative judgments about existing persons with disabilities; and (2) the (...) expression of these judgments itself constitutes a wrong to those persons. Despite depending on both claims, however, philosophical discussion of the expressivist objection has largely centred on the first: while commentators continue to debate whether disability screening does or does not express negative judgments, relatively little attention has been paid to explaining how the expression of those judgements wrongs persons with disabilities. In this paper, I argue both that whether or not the expressivist objection succeeds will ultimately depend on whether a plausible explanation can be supplied for how persons with disabilities are wronged by the expression of negative judgments, and that the existing literature surrounding relational egalitarianism can provide such an explanation, albeit with important limitations. (shrink)

The ‘body’ has remained the pivotal and essential mechanism for analysis within disability scholarship. Yet while historically conceptualized as an individual’s fundamental feature, the ‘disabled identity’ has been more recently explained as a function of ‘normalcy’ through social, cultural political, and legal discriminations against difference and deviancy. Disability studies’ established tradition of consultation with philosophical endeavour remains apparently unwilling to exploit or utilize Martin Heidegger’s understanding of ‘Being’ and interpretation of Dasein as a possible framework for unravelling the complexities (...) of contemporary discrimination and oppression of those others. This paper in tracing Heidegger’s explanation of humankind, inspired by arguments proposed by Cerbone (Int J Philos Stud 2:209–230, 2000) and in consultation with Levin (The body: classic and contemporary readings, Blackwell, Malden, 1999), Aho (2009), Malpas (Heidegger’s topology: being place, world, MIT Press, Cambridge, 2008), and Rae (Hum Stud 33:23–39, 2010) among others, will interpret the ‘embodied’ reality of ‘Being,’ of being-disabled-in-the-world as primarily involved within the practical context and structured according to impersonal, normative social norms, rather than detached, theoretical contemplation or observance. (shrink)

This monograph consists of five parts: (1) introductory material including a conference overview; (2) papers presented at an international symposium on the topic of ethical issues in disability and rehabilitation as a section of the Annual Conference of the Society for Disability Studies; (3) responses to the symposium, prepared by four of the participants; (4) selected additional papers which offer views from perspectives or cultures not represented at the Denver conference; and (5) an annotated international bibliography. Representatives from 10 countries (...) discussed ethical issues and decision making in disability and rehabilitation. Conference papers include: "Genetic Engineering--The New Eugenics? Evolving Medical Attitudes towards the Quality of Life" (Hugh Gallagher);"Description of the Decision-Making Project" (Daryl Evans); "Treatment and Nontreatment Decisions with Respect to Extremely Premature, Very Low Birthweight Infants (500-750g)" (Ernle Young); "Allocation of Resources and Distributive Justice" (John Mather); "Quality Assurance as an Aid to Ethical Decision Making in Disability Management: Lessons from Recent Ethical Issues Involving Disadvantaged Groups in New Zealand" (Peter Gow); "Disability and Ethical Issues: A Point of View from the Netherlands" (Yolan Koster-Dreese); "Who Shall Live or How Shall They Live? Consumer and Professional Perspectives on Treatment/Non-Treatment Decisions" (Joseph Kaufert and Patricia Kaufert); and "Debates across Social Movements on Reproductive Technologies, Genetic Engineering, and Eugenics" (Theresia Degener). Conference commentaries include: "The Meeting of Disability and Bioethics: A Beginning Rapprochement" (Adrienne Asch); "A Plea for More Dialogue: Commentary on Ethics Conference" (Robert Slater); "Healing Our Wounds" (Martha Lentz Walker); "Theories and Values: Ethics and Contrasting Perspectives on Disability" (Harlan Hahn); and "Current Example of Ethical Dilemma" (Susan Lacetti). Selected additional papers include: "High-tech Medicine Is Basic Care" (Frederick Abrams); "Prevention of Disabilities as a Medical Question" (G. Schioler); "The Ethics of Disability Prevention: A Parent's Point of View" (Mrs. J. Baker); "A Reference Matrix for Issues of Life and Personhood" (Mike Miles); "Nazi Scientists and Ethics of Today" (Isabel Wilkerson); "Ethical and Policy Issues in Rehabilitation Medicine (Hastings Center Report)" (Arthur Caplan et al.); and "Differing Approaches to Prevention of Disability and Treatment of Impaired Infants Creates Controversies Worldwide" (Barbara Duncan). (JDD). (shrink)

This article puts forth a novel framework for understanding conceptions of disability using six models of disability: the “Social,” “Medical,” “Tragedy,” “Affirmative,” “Minority” and “Universal” models. It analyzes these models as three opposed pairs, each pertaining to a distinct aspect of the multifaceted experience of disability: (1) the cause of disabled people’s social disadvantage and exclusion; (2) the effect of impairment on individuals’ quality of life and well-being; (3) the dichotomy or lack thereof between disabled and nondisabled people. (...) The article argues that although each model is incompatible with its opposed pair, it is compatible with the remaining four models, in the sense that there is no contradiction in holding the views associated with these models at the same time. It therefore concludes that conceptions of disability are best understood as clusters of views on disability that are associated with compatible models. (shrink)

What does feminist disability studies contribute to feminist methods? Feminist disability scholars interweave life-writing about their experiences of disability or caring for a disabled person to challenge ableist stereotypes. As such, they foreground their own vulnerability to build disability identity and community. This style of life-writing, while essential, tends to calcify the dichotomy between the disabled and abled—a binary that the field of feminist disability studies aims to destabilise. Building on new work in feminist disability studies, I show (...) how some scholars use life-writing to cultivate an estranging sensitivity. This new sensitivity builds on prior feminist disability studies scholarship to estrange us from 1) the idea that disability is a cohesive identity and community, 2) that disability is always a socially desirable position, and 3) that allegiance to disability rights insulates us from ableist anxiety. By embracing the tension between solidifying and destabilising the meaning of disability, feminist disability scholars can leverage life-writing as a tool of resistance and thereby lessen the threat of conformity that life narratives tend to produce. (shrink)

People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities in Wolaita Sodo town, Ethiopia. Both descriptive and explanatory study designs were used and quantitative data were collected. A self-administered questionnaire was designed and distributed (...) to randomly selected 403 (202 females & 201 males) unmarried youth. Data analysis was undertaken using SPSS software in which both descriptive and inferential statistical techniques were utilized for data presentation. The result showed that most (85.5%) of the young people without disabilities participated in the survey were not willing to have any type of personal relationships with persons with disabilities and the main reason for 44.2% of these respondents being the fear of reaction from family members. Furthermore, it was found that the level of willingness of youth without disabilities to engage in romantic love and marital relationships was not influenced by the socio-economic status of people with disabilities. Moreover, the result of binary logistic regression analysis showed that the willingness of respondents to have marital and romantic love relationship with persons with disabilities is significantly associated to the sex (OR = 2.376; P < 0.05; 95%CI = 1.210, 4.664), raised-up area (OR = 2.512; P < 0.01; 95%CI = 1.319, 4.783), age (OR = 2.886; P < 0.05; 95%CI = 1.012, 8.228) and the presence of person with disability in the family (OR = 3.945; P < 0.01; 95%CI = 1.648, 9.442) of respondents. The findings of the present research demonstrate that people with disabilities have continued to face stereotypes and discriminations. Such stereotypes extend to assuming them as asexual and unfit to carryout roles that arise from love or marital relationships which violates the rights of PWDs to form their own family and have children. It is therefore, important to raise the awareness of young people about the differences between disability and sexuality and that physical disability has nothing to do with sexuality and relationship formation. (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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This paper critically engages with Tom Shakespeare’s book Disability rights and wrongs. It concentrates on his attempt to demolish the social model of disability, as well as his sketch of an “alternative” approach to understanding “disability”. Shakespeare’s critique, it is argued, does British disability studies a “wrong” by presenting it as a meagre discipline that has not been able to engage with disability and impairment effects in an analytically sophisticated fashion. What was required was a measured presentation and evaluation of (...) the rich mix of theoretical and empirically based ideas to be found in the discipline, as the groundwork for forward thinking located within a social oppression paradigm. Shakespeare’s undermining of the discipline’s credibility in the eyes of outsiders and newcomers represents a diversionary missed opportunity by an influential writer and activist.Shakespeare’s book1 has certainly stirred up debate, and invited a flurry of angry reviews, in disability studies in the UK—the social science discipline that has been developing radical ideas about disability and disablism since the 1980s. Peopled by both disabled academics and like-minded non-disabled researchers and writers, the DS community recognises that Shakespeare’s book seeks to deliver a fatal wound to what he sees as its sacred cow: the British social model of disability.Shakespeare explains that what he calls the “strong” version of the social model of disability was formulated by Michael Oliver, a leading DS writer and disability activist, on the basis of the social and political ideas advanced in the 1970s by a group of disabled individuals fighting to free themselves from what they experienced as an oppressive care system that relegated and segregated people with serious impairments to residential institutions and to the category of the unemployable.2 3 In short, the social model asserts that “disability” is not caused …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 13.2 (2006) 133-141MuseSearchJournalsThis JournalContents[Access article in PDF]Dysfunctions, Disabilities, and Disordered MindsBengt BrüldeFilip RadovicRichard Gipps' and Jerome Wakefield's commentaries on our article are so different from each other that we have decided to deal with them separately. Gipps suggests that we adopt a different framework altogether. In his view, our main question—"What makes a mental disorder mental?"—is somehow defective, and it ought to be replaced by (...) an alternative question, namely, "What makes a mind disordered?" He thinks he can answer this question by providing an alternative account of the mental in terms of intentionality and suigeneris psychological understanding. He also suggests that mental disorders are "alterations within the intentional order." Wakefield, on the other hand, shares most of our "framework assumptions"; for example, he accepts the way we formulate our central question and how we present the different possible answers. The only part of our general project to which he objects is the attempt to find a principled account of what makes a mental function (dysfunction, mechanism, ability, or the like) mental. His main purpose is to defend and develop his own version of the internal cause view, namely, the idea that mental disorders are (harmful) mental dysfunctions. Because Gipps' comments are of a far more general nature than Wakefield's, we respond to Gipps first. This gives us an opportunity to make our "framework assumptions" more explicit.Gipps' Criticism of the Notion of Mental DisorderLet us first note that Gipps' suggestions are often vague. As Gipps himself puts it, his account is "clearly in need of much further clarification and elaboration" (121). This means that we sometimes have to reconstruct what he says to attribute sufficiently clear views to him.Gipps questions our assumption that there is such a thing as a general category of disorder, of which mental and somatic disorders can be regarded as subcategories. Or more precisely, he rejects the view that "disorder" is a proper category (or "semantic category," as he puts it), and he also seems to deny that "mental disorder" is a category. This is supposed to imply that our central question is somehow wrongly formulated, and to pave the way for his reformulation of this question (from now on, "the move").To determine whether Gipps' objection is valid or not, we need to know what he means by the term "category." However, all we are told is that a noun designates a (semantic) category if and only if it has a "unitary sense." Unfortunately, he does not specify what this "unitary sense" consists in. For example, does he implicitly assume that a noun designates a category if and only if there are necessary conditions for membership that are jointly sufficient? The example he offers (see [End Page 133] p. 118) suggests another possible interpretation, however. Here, he claims that the relation between the terms "mental disorder" and "physical disorder" are analogous to the relation between the terms "chemical reaction" and "emotional reaction." This suggests that the term "disorder" as it occurs in the phrase "physical disorder" and the term "disorder" as it occurs in the phrase "mental disorder" have different senses. This is an interesting suggestion that may well be correct, but Gipps does not offer any arguments for the assumption that "disorder" behaves like "reaction." Neither does he offer any examples of proper (semantic) categories.The Move from "Mental Disorders" to "Disordered Minds"In Gipps' view, mental disorders are best conceived of as disorders of the mind, and physical disorders as disorders of the body, and he therefore suggests that we ask what makes a disordered mind disordered rather than what makes a mental disorder mental. But why does Gipps believe that this move from "mental disorder" to "disordered minds" constitutes an improvement? The first reason has already been given, namely that the term "disorder" might not designate a proper category. But this is not a good reason for making the move Gipps suggests unless we assume that "mind" and "body" are proper categories. At this... (shrink)

Journal of Religious Ethics, Volume 49, Issue 2, Page 358-380, June 2021.

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

The sport of wheelchair rugby is the subject of a recent film Murderball, which tells the story of the apparently intense rivalry between the Canadian and United States men's teams. In part, the story is told through the lives of some of the game's leading players and coaches. Murderball deals with a series of ethical and political questions concerned with conceptions of disability, articulations of sporting bodies, and the value attached to sporting performance. In this paper we offer a critique (...) of Murderball and explore a number of themes including: (1) What can disabled bodies do?; (2) This is not the Special Olympics; and (3) ?Hot? and disabled. We conclude that these themes offer us new intellectual challenges for thinking about the physical education experiences of young disabled people and progression in disability sport. Indeed, we argue that Murderball moves disability issues into new intellectual terrain, thus increasing the ways in which people who work with young people and sport might need to take account of disability. (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)

The efficacy of traditional training programs (e.g., neurodevelopmental therapy) in promoting independent mobility and early child development across all three International Classification of Functioning, Disability, and Health levels lacks rigorous research support. Therefore, early power mobility training needs to be considered as a feasible intervention for very young children who are unlikely to achieve independent mobility. This perspective article has three aims: (1) to provide empirical evidence of differences in early independent mobility, motivation, daily life activities, and social participation between (...) young children with typical development and motor disabilities; (2) to discuss the contemporary concepts of and approaches to early power mobility training for young children with motor disabilities and the current need for changes to such training; and (3) to provide recommendations for early power mobility training in pediatric rehabilitation. Independent mobility is critical for social participation; therefore, power mobility can be accessible and implemented as early as possible, specifically for infants who are at risk for mobility or developmental delay. To maximize the positive effects of independent mobility on children’s social participation, early power mobility training must consider their levels of functioning, the amount of exploration and contextual factors, including individual and environmental factors. (shrink)

2. I’ve never put forward a “definition of the individual as a discrete, self-reliant, self-conscious person with at least an equal store of goods as others.” Again, that would be an absurd position to hold. Being unable to walk, see, or hear does not mean that one is not an individual. 3. Nor do I hold that “protected personhood”— not my ex- pression, by the way—is a conditional category based on attri- butes “that are at least equal to those of (...) the mundane norm.”. (shrink)

The question of how to treat people with cognitive disabilities (PCDs) poses an important problem for Rawlsian theories of justice because it is unclear whether PCDs are included within the scope of moral personhood. Rawls’s Standard Solution focuses on nondisabled adults as the fundamental case, while later addressing PCDs as marginal cases. I claim that the Standard Solution has two weaknesses. First, it relies on a dichotomy between nondisabled and disabled that is tenuous and difficult to defend. Second, it (...) makes the theory circular in a vicious way.I argue that Rawls’s theory can be revised so that it solves the problem of how to treat PCDs while avoiding the two weaknesses of the Standard Solution. There are three constraints on any successfully revised Rawlsian theory: 1) it must be resourcist rather than welfarist; 2) it must provide some principled basis for limiting our obligations to PCDs; and 3) it must address the whole range of PCDs, including the most severely disabled individuals. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Disability and the Resurrection of the Body:Identity and ImaginationMedi Ann VolpeI love Star Wars. I watched Luke destroy the Death Star as a wide-eyed eight-year-old and I relished the downfall of the imperial walkers on the ice planet Hoth. I rejoiced with Luke at seeing his father, Anakin Skywalker (Darth Vader), restored in death to the Good Side of the Force, glowing faintly alongside Obi-wan Kenobi and the Jedi (...) master Yoda. In the 1983 version of The Return of the Jedi,' Anakin's Force ghost looked like the old, wounded, disabled man whose body Luke rescued from the second Death Star about to explode. Hayden Christiansen, who plays Anakin as a young man in the prequels Attack of the Clones and The Revenge of the Sith, was only two years old then; yet the 1983 film has since been edited so that his image is the Force ghost alongside Obi-wan Kenobi and Yoda. I find this troubling—and not just because I am a cantankerous old fan who likes things the way they were.For a theologian with an interest in disability,1 the swap calls to mind the worries of some disability theologians2 about continuity and discontinuity [End Page 993] in the resurrection: if disabilities that marked us or our loved ones in this life are eradicated, how does identity persist? George Lucas explained in an interview that, when Anakin Skywalker was "redeemed," he went back to being the person he was before he was consumed by the Dark Side: the real Anakin ceased to be when he became Darth Vader.3 But the replacement of the post–Darth Vader Anakin with the young, pre-Darth Vader Anakin creates enormous problems for thinking about the resurrection, even in the fictional Star Wars universe.4 Anakin seems to lose most of his adult life. Would he remember that he had been Darth Vader, or that he saved Luke's life? If he does not remember the event, how can this Force ghost be the same person that Luke rescued from Death Star 2.0? George Lucas's decision to replace Sebastian Shaw, who played Darth Vader in the original Return of the Jedi, with Hayden Christiansen introduces radical discontinuity into the narrative. The substitution does not give us the "real" Anakin; instead, we are left with neither Anakin nor Darth Vader, but a different person; someone Luke would not have recognized, and who might well not recognize either Luke or himself.In a similar vein, Nancy Eiesland mused that, without her disability, caused by a congenital, degenerative bone disease, she would be "unknown to [herself] and perhaps to God."5 Her perception of resurrection healing was that she would be as different in the resurrection as Hayden Christiansen is to Sebastian Shaw. Drawing on classical Christian teaching from Gregory of Nyssa to Matthias Scheeben,6 I will show in this essay that Eiesland's concern [End Page 994] is misplaced. Considering the way that the resurrection body is often portrayed, however, her concern is understandable. Disability theologians' qualms about the resurrection deserve a retrieval of the classical doctrine that addresses their suspicions about the discontinuity of identity in the resurrection and upholds the full humanity of people with disabilities, even profound intellectual disabilities.IIn one sense, the questions raised by disability theologians are not new.7 First-century Christians argued about the transformation that St. Paul envisaged, which involved continuity and change. In 1 Corinthians, he tells us "a mystery … we shall all be changed, in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed. For this perishable nature must put on the imperishable, and this mortal nature must put on immortality" (15:51–53). Christians debated the nature of the change involved in putting on immortality and in their debates asked questions about the continuity of identity. Early Christian thinkers, like the early-third-century theologian Tertullian (AD 160–220), were keen to establish that the ensouled body resurrected to punishment or reward was the same as the earthly... (shrink)

It is proved (Theorem 1) that if 0♯ exists, then any constructible forcing property which over L adds no reals, over V collapses an uncountable L-cardinal to cardinality ω. This improves a theorem of Foreman, Magidor, and Shelah. Also, a method for approximating this phenomenon generically is found (Theorem 2). The strategy is first to reduce the problem of `disabling' forcing properties to that of specializing certain trees in a weak sense.

In 1977 John Money published the first modern case histories of what he called ‘apotemnophilia’, literally meaning ‘amputation love’ [Money et al., The Journal of Sex Research, 13(2):115–12523, 1977], thus from its inception as a clinically authorized phenomenon, the desire for the amputation of a healthy limb or limbs was constituted as a sexual perversion conceptually related to other so-called paraphilias. This paper engages with sex-based accounts of amputation-related desires and practices, not in order to substantiate the paraphilic model, but (...) rather, because the conception of these (no doubt) heterogeneous desires and practices as symptoms of a paraphilic condition (or conditions) highlights some interesting cultural assumptions about ‘disability’ and ‘normalcy’, their seemingly inherent (un)desirability, and their relation to sexuality. In critically interrogating the socio-political conditions that structure particular desires and practices such that they are lived as improper, distressing and/or disabling, the paper constitutes an exercise in what Margrit Shildrick [Beyond the body of bioethics: Challenging the conventions. In M. Shildrick and R. Mykitiuk (Eds.), Ethics of the body: Postconventional challenges (pp. 1–26). New York: MIT Press, 2005] refers to as “postconventional ethics”. (shrink)

The distinction between students diagnosed with a learning disability and those considered merely slow learners is based on conceptually flawed assumptions that: 1) LD represents a brain dysfunction while SL does not; 2) LD is a well-defined disorder; 3) valid measurement instruments distinguish LD and SL; 4) special education for students with LD is fundamentally different from that for SL students. These erroneous beliefs are maintained because governmental legislation transformed a diagnosis of LD into an admission ticket to a variety (...) of government entitlements thereby subjecting it to political, legal, social and ideological forces. (shrink)

This article introduces Transition 2.0, a paradigm shift designed to study and support students with disabilities' transition to higher education. Transition 2.0 is the result of a qualitative study about how a group of young people with vision impairments used digital technologies for their transition to university. The findings draw from observations, a researcher diary, focus groups, individual interviews, and data from social media. The article discusses a conventional view of transition, referred to here as Transition 1.0, which has dominated (...) disability-related research and service provision in higher education. It counters this view by further developing the conceptual framework for Transition 2.0. The findings expand current conceptual approaches to transition by incorporating in the analysis the role played by digital tools such as social media and mobile devices. They also provide a new lens through which to study and understand student engagement in higher education. (shrink)

This theoretical paper explores the role of an ethics of embodiment perspective in promoting meaningful work for people with disabilities in Alternative Forms of Work Organization (AFWO). Starting with a consideration of the importance of meaningful work within a broader project of disability inclusion, the paper addresses four main challenges that AFWO faces, as expressions of a neo-normative paradigm, in producing meaningful work for people with disabilities while considering issues of embodiment: (1) self-identity; (2) autonomy/flexibility; (3) abstract embodiment; (4) Intermediate (...) space/time. Referring to crip theory, a radical and provocative approach in disability studies that challenges normalization and compulsory able-bodiedness, the paper then proposes four illustrative cases that offer a critical and innovative view on embodiment. From the analysis of these cases, we identify four categories for a crip ethics of embodiment: (1) crip self-identity; (2) mixed ability organizing; (3) meaningful embodiment; and (4) non-normative space/time. We argue that these four categories provide new pathways for AFWO to promote meaningful work for people with disabilities and represent a potential turning point in reflecting on the neo-normative approach in organizations. (shrink)

pt. 1. Background you need. -- What is brain-compatible teaching -- The old and new of it -- When brain research is applied to the classroom everything will change -- Change can be easy -- We're not in Kansas anymore -- Where's the proof -- Tools for exploring the brain -- Ten reasons to care about brain research -- The evolution of brain models -- Be a brain-smart consumer: recognizing good research -- Action or theory: who wants to read all (...) that research -- Excellent sources of research -- Fun factoids on the brain -- What's in the human brain -- Brain teaser -- The brain divided -- The brain connected -- Brain geography -- Brain "cell" ebration: far-out facts about brain cells -- Learning happens but how -- Are today's kids different -- Boy's and girl's brain differences -- Learning disabilities; different brains -- The cranial soup bowl: understanding the chemicals in our brains -- pt. 2. The foundation for teaching is principles, not strategies. What are the principles -- Principle 1: the principle of change: brain is dynamic, not fixed -- Principle 2: the principle of variety: all brains are unique -- Principle 3: the principle of developmental sensitivity -- Principle 4: the principle of interaction: we have a social brain -- Principle 5: the principle of connectivity: the brain is an integrated system of systems -- Principle 6: the principle of memory malleability -- Principle 7: the principle of resource consumption -- necessity for processing -- pt. 3. So what; now what. Asking big questions: what's in a brain-compatible curriculum -- Brain-compatible test-taking success strategies -- Systemic change: the next level -- Big picture analysis: transformation happens -- Action research makes a difference -- The learning community -- What's next. (shrink)

On January 30, 2020, the World Health Organization declared a Public Health Emergency of International Concern (PHEIC) over what would quickly become known as SARS-CoV- 2 or COVID- 19. This emergency status was officially ended in the United States in May 2023 amidst much dissent and debate. Although emergency conditions resulting from COVID- 19 will likely wax and wane over the coming years, there is good reason to think that the incidence of severe global pandemics will increase over the next (...) century, as will declarations of emergency. The declaration of an emergency calls for urgent action, but it just as urgently demands careful reflection. Official “emergency” status licenses unparalleled executive intervention, completely reorganizing the lives of those who live under its decree. Such official recognition, however, is heavily dependent on the social context in and from which the emergency arises. Highlighting which circumstances rise to the level of an official emergency clarifies our reigning assumptions about what threshold of active harm—and in relation to which groups of people—demands immediate intervention. (shrink)

The paper by Susan M. Wolf and Jeffrey P. Kahn published in this issue of the Journal of Law, Medicine & Ethics notes that we are members of the Working Group on Genetic Testing in Disability Insurance and that the members of the Working Group do not necessarily subscribe to its recommendations. Although we agree with some of Wolf and Kahn's recommendations, we do not agree with recommendations 1, 3, 4, and 5 for individual disability insurance and recommendations 1, 2, (...) and 3 for group disability insurance. We use this paper to delineate our areas of disagreement, but we do not discuss areas such as employment law as they are not our areas of expertise.First, understanding our roles on the Working Group is important. As members, we provided technical expertise on disability insurance. Our input to the Working Group represents our individual opinions. (shrink)

The International Classification of Functioning, Disability and Health (ICF), designed by the WHO, attempts to provide a holistic model of functioning and disability by integrating a medical model with a social one. The aim of this article is to analyze the ICF’s claim to holism. The following components of the ICF’s complexity are analyzed: (1) health condition, (2) body functions and structures, (3) activity, (4) participation, (5) environmental factors, (6) personal factors, and (7) health. Although the ICF claims to be (...) holistic, it presupposes a monistic materialistic ontology. We indicate some limitations of this ontology, proposing instead: (a) a pluralistic–holistic ontology (PHO) and (b) a multidimensional view of the human being, with individual and environmental aspects, in relation to three levels of reality implied by the PHO. For the ICF to attain its holistic claim, the interactions between its components should be based on (a) and (b). (shrink)

“Gut issues” refers to any condition that affects our digestive systems and that causes pain or discomfort. The term points to the experience of our gut being an issue for us – interfering with our plans, undermining our bodily self-control, threatening our well-being. This paper aims to do three things: (1) to introduce and justify a disability theory approach to gut issues; (2) to use this lens to argue that the experience of gut issues has a social and relational dimension (...) that could be otherwise; and (3) to argue for a shared responsibility to ameliorate this dimension. (shrink)

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

Consider two cases. In Case 1, you must decide whether you save the life of a disabled person or you save the life of a person with no disability. In Case 2, you must decide whether you save the life of a disabled person who would remain disabled, or you save the life of another disabled person who, in contrast, would also be cured as a result of your intervention. It seems that most people agree that (...) you should give equal chances in Case 1: saving the life of the person with no disability would be unfair discrimination against the person with disability. Yet, in Case 2, it appears that many people believe that you are at least permitted to save straightaway the person who would have no disability after your intervention. There would be no unfair discrimination against the other person. I argue that these judgments present a puzzle for theories of resource allocation in normative ethics. The puzzle is straightforward for consequentialists: the two cases have the same outcomes, but the judgments are different. But the puzzle also presents a problem for nonconsequentialist views. After introducing the cases, I show this by reviewing a number of proposals for solving the puzzle. I argue that none of these proposals are successful. I then make my own proposal and conclude by spelling out its implications. (shrink)

While some philosophers believe disabilities constitute a “bad-difference,” others think they constitute a “mere-difference” (Barnes 2016). On this latter view, while disabilities may create certain hardships, having a disability is not bad in itself. I argue that chronic pain problematizes this disability-neutral view. In doing so, I first survey the literature on chronic pain (§1). Then, I argue that Barnes’s mere-difference view cannot adequately accommodate the lived experiences of many people who suffer from chronic pain (§2). Next, I consider two (...) ways Barnes might respond and I explain why these responses are not workable (§3). Finally, I conclude with a brief discussion of disability variantism, the view that just as some disabilities can be neutral or even positive for some individuals, other disabilities like chronic pain can understandably make some people’s lives miserable not because society has failed them but simply because some conditions can openly conflict with well-being (§4). (shrink)

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

One challenge to the concept of human dignity is that it is a rootless notion invoked simply to mask inequalities that inevitably exist between human beings. This privileging of humans is speciesist and its weak point is the profoundly disabled human being. This article argues that far from being a weak point, the profoundly disabled person is a source of strength and witness to the intrinsic dignity that all human beings have by virtue of being human. The (...) class='Hi'>disabled represent the reality of human existence that is both strong and fragile. Although human dignity can be understood philosophically its depth is rooted in Christian theological insights. The profoundly disabled occupy a privileged position and share in a theology of mission since they testify to the interdependence of every human being and human dependence on God to a myopic world that only values strength, autonomy and independence. Content Type Journal Article Category Article Pages 185-203 DOI 10.1558/hrge.v17i2.185 Authors Pia Matthews, Theology, Philosophy, and History, St Mary’s University College, Waldegrave Road, Strawberry Hill, TW1 4SX Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 17 Journal Issue Volume 17, Number 2 / 2011. (shrink)

In "Disabilities and First-Person Testimony: A Case of Defeat?" Hilary Yancey argues that in at least some cases we have “no significant reason to distrust” the evidential value of first-person testimony concerning the impact of a physical disability on that individual’s well-being. Her argument is premised on a defeasible principle of trust: One should trust the testimony of others regarding p whenever one recognizes that the testifier is in a position to know p. Since the subjective component of wellbeing is (...) fist-person privileged, that is, ordinarily the subject herself is in the best position to know, an audience to such testimony must be aware of a defeater in order to shift the burden of proof and block the testimony from counting as evidence. In the body of the paper Yancey argues that 1) conflicting first-person testimony does not constitute an inescapable content defeater and 2) neither irrational adaptive preferences nor low life expectations inescapably undercuts the reliability of these testifiers regarding matters of their own subjective well-being. The burden of proof is not globally shifted by either kind of defeater, Yancey argues, so at least some first-person testimony about disability must inform our beliefs about the nature of disabilities. In my comment I ask and attempt to answer three questions on Yancy’s behalf, then invite her to set me straight if I have it wrong. I go Kantian along the way. 1. Whence arises the worry, and why focus on these defeaters? 2. How common is PNT, anyway, and why does it matter? 3. On what grounds should we distrust PNT in particular cases? (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)

Bien que l’agenda international ait souligné la nécessité de diversifier le personnel enseignant, les recherches portant sur les étudiants en situation de handicap en formation initiale d’enseignant sont assez rares. Pourtant, la formation des enseignants est confrontée à un véritable dilemme: l’obligation de proposer des aménagements raisonnables tout en respectant un parcours de formation qui soit conforme aux standards de la profession (“dilemme de la compétence professionnelle”). Cet article propose une revue systématique concernant (1) les principales questions liées aux étudiants (...) en situation de handicap dans le cadre de la formation initiale et (2) les différentes formes que revêt le “dilemme de la compétence professionnelle” au sein du programme. Vingt études empiriques, publiées entre 1990 et 2018, ont été incluses. Sept domaines thématiques et trois formes de dilemme (institutionnel, personnel et culturel) sont ressortis des analyses. Les principales conclusions montrent que le parcours personnel des étudiants en situation de handicap dans le domaine de la formation initiale est difficile et complexe. Bien qu’elles révèlent le rôle crucial du “dilemme de la compétence professionnelle,” elles montrent aussi la nécessité de le redéfinir en tenant compte du rôle actif joué par les étudiants en situation de handicap dans l’adoption de stratégies d’adaptation, au-delà des aménagements raisonnables obtenus. La possibilité d’une pluralité de profils de compétences dépassant l’idée stricte d’un profil uniforme est également discutée. (shrink)

This article discusses the acquisition of a physical impairment/disability through voluntary body modification, or transability. From the perspectives of critical genealogy and feminist intersectional analysis, the article considers the ability and cis*/trans* axes in order to question the boundaries between trans and transabled experience and examines two assumptions impeding the conceptualization of their placement on the same continuum: 1) trans studies assumes an able-bodied trans identity and able-bodied trans subject of analysis; and 2) disability studies assumes a cis* disabled (...) identity. The perception of transsexuality and transability as mutually exclusive phenomena results from a nonintersectional analysis of transsexuality as an issue of sex/gender, but not of ability, and of transability as an issue of ability, but not of sex/gender. Difficulty recognizing continuities between these phenomena thus stems from an ableist interpretation of sex/gender and a cisnormative* interpretation of ability. This article aims to: 1) enrich intersectional analysis in trans and disability studies and transability scholarship; 2) complicate disability studies, in which disabilities are often presumed to be “involuntary,” and encourage the decentering of a cis* subject; 3) encourage trans studies to decenter an able-bodied subject; and 4) advocate for increased dialogue and the creation of alliances between trans and disability studies and movements. (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)

Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of (...) disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflect on the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness. (shrink)

In this article, I develop an account of genius inspired by Kristeva’s writings on feminine genius in order to argue that certain ill and disabled people should be considered geniuses in the face of social conditions and medical practices that too often marginalize, restrict, and silence them. In contrast to Kristeva’s notion of feminine genius, which relies on an Oedipal developmental story, I argue that we should understand genius as (1) the intimate revolt of (2) a singular subject who (...) (3) occupies a marginalized social position and who, through their revolt, (4) creates a work. Conceiving of genius in this way, I contend, opens up the possibility of recognizing Kristevan genius from marginalized positions other than that of women while remaining true to Kristeva’s account of the intimate. Having developed this account, I offer an example by suggesting that Susan Wendell is one such genius. Finally, I move on to argue that, by taking Kristeva’s theory of the semiotic seriously, we may discover genius among those with “severe cognitive disabilities,” and discuss Eva Kittay’s daughter, Sesha, as an example. My hope is that this concept may help us be attentive to the singular accomplishments of those who face exclusion and silencing as a result of illness or disability. (shrink)

The literature of bioethics suffers from two serious problems. (1) Most authors are unable to take seriously both the rights of the great apes and of severely disabled human infants. Rationalism—moral status rests on rational capacities—wrongly assigns a higher moral status to the great apes than to all severely disabled human infants with less rational capacities than the great apes. Anthropocentrism—moral status depends on membership in the human species—falsely grants all humans a higher moral status than the great (...) apes. Animalism—moral status is dependent on the ability to suffer—mistakenly equates the moral status of humans and most animals. (2) The concept person is widely used for justificatory purposes, but it seems that it cannot play such a role. It seems that it is either redundant or unable to play any justificatory role. I argue that we can solve the second problem by understanding person as a thick evaluative concept. This then enables us to justify assigning a higher moral status to the great apes than to simple animals: the great apes are persons. To solve the first problem, I argue that certain severely disabled infants have a higher moral status than the great apes because they are dependent upon human relationships for their well-being. Only very limited abilities are required for such relationships, and the question who is capable of them must be based on thick evaluative concepts. Thus, it turns out that to make progress in bioethics we must assign thick evaluative concepts a central role. (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)

Cette étude vise à identifier les facteurs associés à l’insatisfaction des jeunes adultes finlandais qui présentent une incapacité physique majeure, avec ou sans déficience intellectuelle concomitante, à la suite de leur transition des services santé pour enfants aux services pour adultes. Les pédiatres neurologues ont utilisé la grille d’évaluation clinique du Système de classification de la fonction motrice globale (étendu et révisé) de niveau IV ou V afin de diagnostiquer l’incapacité physique majeure spécifique à chacun des 74 participants (âge moyen (...) : 20,2 ans). Trente-neuf (53%) participants présentaient une déficience intellectuelle concomitante, selon la CIM-10 (QI inférieur à 70). Les pédiatres neurologues ont développé l’instrument Severely Disabled Youths’ Life Situation and the Functioning of the Service Systems in Finland afin de recueillir et traiter les données. Enfin, les tests de Fisher examinaient les corrélations entre l’insatisfaction des facteurs de soins et les soins de santé. Des régressions logistiques binaires ont permis d’associer l’insatisfaction à l’égard des services santé à la nécessité d’utiliser de nouveaux appareils d’assistance, à la difficulté accrue d’accéder à des rendez-vous médicaux et à l’ignorance des médecins à l’égard des problématiques du handicap. L’étude recommande la création de cliniques neurologiques multi-professionnelles qui accueilleraient les jeunes adultes qui présentent des incapacités physiques majeures, avec ou sans déficience intellectuelle, et qui initieraient les médecins aux caractéristiques de ces catégories de patients et à leurs enjeux spécifiques. (shrink)