This study examined the disability support offices websites of twelve US higher education institutions anchored in multimodal discourse analysis and genre analysis to examine how semiotic resources are deployed to describe DSO services on their websites and to determine the discursive functions of advertisement they perform. The DSO websites were within four clicks from HEI homepages but had inconsistent navigation paths, making it difficult to reach DSO websites. DSO websites were foregrounding promoting and branding the institutions rather than (...) presenting the information about the services offered. This is achieved by using multimodal promotional rhetoric such as: situating accessibility as central commodifiable attribute, promoting the value of accessibility, establishing the superiority of the institution, constructing images of students with disabilities as empowered but dependent upon the DSO, and situating students within a college community. Implications for DSO websites functioning as advertisements are also discussed. (shrink)

Parenting a child with a disability presents unique challenges and requires additional care and attention. Parents play a crucial role in promoting their child’s development, fostering their independence, and nurturing their overall well-being. This research study aims to investigate the adequacy of resources and support available to families of children with disabilities, as well as the perception of parents regarding these aspects. A specially designed questionnaire consisting of 21 questions was used as the research instrument, which was distributed (...) to families through a Google form. The research sample was convenience-based and comprised 250 parents of children with disabilities. The findings of the study reveal widespread dissatisfaction among parents in relation to institutional support. The results indicate that a significant majority of parents (80%) do not receive adequate institutional support, while only 1% reported receiving it. Furthermore, not a single parent reported being satisfied with the coordination among medical, educational, and social institutions, with 56% expressing dissatisfaction and 44% indicating partial satisfaction. This study highlights the need for improved coordination among various institutions, increased parent education, and the provision of comprehensive support services to ensure a better quality of life for families of children with disabilities. (shrink)

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Article 12 (Equal Recognition before the Law) of the UN Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities: the recognition of legal capacity. Legal capacity means recognizing the right to make decisions for oneself. Article 12 is also moving in the direction of supported decision-making, as an alternative to substituted (...) decision-making. The objective of this paper is to show conceptually the connection between supported decisionmaking and the preservation of personal autonomy for persons with intellectual disabilities. This paper discusses supported decision-making based on Bach and Kerzner's model: (a) legally independent status, (b) supported decision- making status, and (c) facilitated decision-making status. Arguments will be made based on John Stuart Mill's concept of autonomy and arguments against it using Sarah Conly's argument for paternalism. (shrink)

The two target articles in this issue draw an important connection between disability bioethics and geriatric bioethics. Dominic JC Wilkinson makes a pragmatic case for using frailty as a fa...

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types, and this starts before the age of 18. Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this (...) generalization, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity. (shrink)

(OPEN ACCESS) In this article, I explore the implications of three moral grounds for the justification of supported voting – respect as opacity, respect as equal status, and respect as political care. For each ground, I ask whether it justifies surrogate voting for voters unable to either communicate or give effect to their electoral judgments, due to some cognitive or communicative disability. (Henceforth: incommunicability cases.) I argue that respect as opacity does not permit surrogate voting, and equal status does (...) not justify such support – although the latter account can make sense of the value loss involved in the persistent non-participation of individuals with cognitive and communicative disabilities. Finally, I argue that an account of supported voting based on the ethics of political care can accommodate a pro tanto moral permission to provide surrogate voting as a form of support in incommunicability cases, and it can account for the inclusive approach of the UN Convention on the Rights of Persons with Disabilities to supported decision-making. However, I show that in incommunicability cases, what the political community and individual caretakers ultimately owe to adult fellow citizens as equal members of the political community is some adequate form of political care – but not necessarily surrogate voting. (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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Although generally supportive of our overall position, both Zachar and Gala and Laughon raise questions about our research design. Herein, we respond to these questions by presenting counterarguments that support the soundness of this design.Subsequent to stating some broad agreement with our central thesis that mental disorder is best viewed as a disability concept and not a behavioral one, Dr. Zachar expresses a number of reservations about our work. We focus on the following discussion on what seem to (...) be the most significant of these.Dr. Zachar states the following : “In 8 of their 12 conditions, the dependent variable is evaluation of problematic behavior and the independent variable is disability... (shrink)

Advances in technology, research development, and teaching practices have brought improvements in the training, levels of autonomy, and quality of life of people who need support and resources appropriate to their circumstances of disability. This article focuses on empirically analyzing the usefulness of treatments that have been supported by technology to answer the question “How do technological ecosystems being used help people with special educational needs?” The multiple case study methodology was used to address six categories of analysis: (...) project data, objectives, processes, outputs and outcomes, technologies, and impact. The processes, open in communication, were characterized as transversal, ethical, and sustainable. The results yielded various technological ecosystems that support people with disabilities, deliver the help they need to improve their health, and provide enjoyable user experiences. At the same time, they promote the training and improvement of teaching methodologies and involve families in order to improve their knowledge, attitudes, and care of children, young people, and adults with functional diversity. (shrink)

It is now broadly accepted that disability is a concept infused with both descriptive and evaluative meaning, such that invoking the concept of disability necessarily involves making judgements of moral value as well as describing certain facts about individuals. This paper aims to map the complex terrain that shapes our current understandings of disability by outlining five distinct ‘discourses of disability’. It is shown how the similarities and differences between the discourses hinge on different ways of (...) making sense of the descriptive and evaluative dimensions of the concept, and the relationships between these dimensions. The paper concludes by considering the specific implications that these different ways of elucidating the concept of disability might have for the provision of clinical ethics support, both in terms of shaping ethical decision-making relating to people with disabilities and in terms of framing the process of providing clinical ethics support itself. (shrink)

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

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we analysed how their expression of (...) cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

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

In this paper, we conduct a secondary analysis of The Institute of Educational Sciences’ (IES) 2011-2012 Schools and Staffing Survey (SASS) data, a self-reported, nationally representative database to examine: (a) the average caseload of students with disabilities and emergent bilingual learners within and across social studies content areas, as well how social studies teachers’ caseloads compare with other content area disciplines and (b) the extent and perceived utility of professional development opportunities social studies teachers receive to support both students (...) with disabilities and emergent bilingual learners. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when (...) it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

Self-advocacy organisations support people in a wide range of political activities, alongside providing key social networks. The emergence of formalised self-advocacy for intellectually disabled people marked an important cultural shift. These groups soon became associated with the pursuit of social change and the attainment of rights. The role of the self-advocacy support worker, working together with self-advocates, has been pivotal. However, studies have shown there has been concern over the relationship between self-advocates and those who advise or (...) class='Hi'>support them. Both parties are aware of the potential tensions of supporters teaching people skills to take control, to manage their workers, whilst, perhaps inadvertently, assuming a powerful position in the relationship. This interesting paradox hints at ethical complexities inherent in the role. A key challenge facing these support workers is how they can support their employers to run successful organisations, without ?taking over?. Using material from both Chapman and Tilley's research of self-advocacy organisations in the UK, this article problematises some key ethical issues within the role. (shrink)

This article develops a detailed, empirically driven analysis of the nature of the transition costs incurred in becoming disabled. Our analysis of the complex nature of these costs supports the claim that it can be wrong to cause disability, even if disability is just one way of being different. We also argue that close attention to the nature of transition costs gives us reason to doubt that well-being, including transitory impacts on well-being, is the only thing that should (...) determine the wrongness of causing or removing disability. Non-welfare considerations also defeat the claim that it is always wrong to cause disability. The upshot of these conclusions is that closer attention to the nature of transition costs supports disabled people who strenuously contest the assumption that their well-being is lower than nondisabled people. It also suggests that, in addition, disabled people should contest their opponents’ narrow account of how we should make ethical decisions regarding causing or failing to prevent disability. (shrink)

Disability rights (DR) advocates have consistently opposed the legalization of physician-assisted dying (PAD) on the grounds that it wrongly discriminates against the disabled. This chapter distinguishes three variants of this objection. The first and perhaps primary one, based on “soft paternalism,” claims that PAD should not be legalized for the sake of those who might choose it. The second alleges that the laws harm all disabled people by encouraging support for PAD as the cheaper alternative to providing the (...) disabled more social support and protection from discrimination. The third alleges that legalized PAD harms all disabled people by expressing the denigrating message that their lives are less valuable than those of the able. The chapter finds that whatever the merits of the first two objections, DR advocates cannot consistently accept them while maintaining support for a legal right to reject unwanted treatment. It also finds grounds to doubt the cogency of the third objection. (shrink)

This paper considers the range of possible policy options that are available if we wish to attempt to treat people with cognitive disabilities as equal members of society. It is suggested that the goal of policy should be allow each disabled person to establish a worthwhile place in the world and sets out four policy options: cash compensation, personal enhancement, status enhancement and targeted resource enhancement. The paper argues for the social policy of targeted resource enhancement for individuals with cognitive (...) disabilities, in the form of providing cash with some limits on its use. Taking the example from the UK of ‘self-directed support’ it is argued that such policies can be cost-effective and advance the autonomy of people with cognitive disabilities, especially when compared with current policies of centrally provided services. (shrink)

Recent research showed the potential benefits of robot-assisted therapy in treating children with Autism Spectrum Disorder. These children often have some form of Intellectual Disability too, but this has mainly been neglected by previous robotics research. This article presents an empirical evaluation of robot-assisted imitation training, where the child imitated the robot, integrated into the Treatment and Education of Autistic and related Communication handicapped Children program. The sample included six hospitalized children with different levels of ID, from mild to (...) profound. We applied mixed methods to assess their progress, during treatment and three months later. Results show increased Gross Motor Imitation skills in the children, except for those with profound ID and the therapists’ positive attitude towards the humanoid robot. Furthermore, the therapists suggest how a robot could be used to autonomously collect and analyze the information obtained in the rehabilitation training for a continuous evaluation of the participants. (shrink)

This paper builds on the work of Tuffrey-Wijne et al. and explores the issue of vulnerability and persons with disabilities in relation to Euthnasia and Assisted Dying. The commentary draws on both the literature and on case examples from Canada. Specifically, it considers the issue of EAS as an alternative to, or substituted for, appropriate disability supports. Secondly, it considers the issue of the devaluation of disabled lives in general and within health care practice and ethics. It concludes that (...) current safeguards are inadequate and that as EAS regimes become more permissive the risk to disabled persons will increase. (shrink)

Philosophical interest in disability is rapidly expanding. Philosophers are beginning to grasp the complexity of disability--as a category, with respect to well-being and as a marker of identity. However, the philosophical literature on justice and human rights has often been limited in scope and somewhat abstract. Not enough sustained attention has been paid to the concrete claims made by people with disabilities, concerning their human rights, their legal entitlements and their access to important goods, services and resources. This (...) book discusses how effectively philosophical approaches to distributive justice and human rights can support these concrete claims. It argues that these approaches often fail to lend clear support to common disability demands, revealing both the limitations of existing philosophical theories and the inflated nature of some of these demands. Moving beyond entitlements, the author also develops a unique conception of dignity, which she argues illuminates the specific indignities experienced by people with disabilities in the allocation of goods, in the common experience of discrimination and in a wide range of interpersonal interactions. Disability with Dignity offers an accessible and extended philosophical discussion of disability, justice and human rights. It provides a comprehensive assessment of the benefits and pitfalls of theories of human rights and justice for advancing justice for the disabled. It brings the moral importance of dignity to the centre, arguing that justice must be pursued in a way that preserves and promotes the dignity of people with disabilities. (shrink)

This thesis is an evaluation of the badness of disability and equality. It argues that disability poses a problem for equality and that, given the new advances in reproductive and gene technologies, egalitarians should strive to give an answer to how we should best reduce the inequality between disabled and non-disabled individuals of future generations. To support the claim that disabilities pose a problem for equality, I argue against the recently proposed Mere Difference View of disability. (...) Firstly, the view is not successful in responding to why, if disabilities are neutral, inflicting disability is still impermissible. Secondly, some intellectual disabilities, for example, do not bring about positive features capable of compensating for the negative features that they also bring about. If some disabilities are bad states of being, some disabled individuals will be worse off than non-disabled individuals other things being equal. Given that disabled individuals are subject to inequality due to their disability, I analyse how able traditional compensatory accounts of egalitarian justice are when it comes to improving this inequality. I conclude that given the existence of intellectual disabilities, traditional compensatory accounts are not fully satisfactory and that egalitarians should look at whether other means, like enhancements and preventive techniques, would do this job better. Paradoxically, techniques that lead to the reduction in the incidence of disabilities make things worse with respect to one new aspect of inequality, namely the concentration of inequality. In scenarios of disability reduction, where there are only a few remaining disabled individuals and a great number of non-disabled individuals, disabled individuals would be worse off than a great number of non-disabled individuals. This situation can potentially also have a negative impact in the wellbeing of the few remaining disabled individuals if the fact that disabled individuals become a very small minority puts less pressure in society to accommodate them. I conclude that reducing the incidence of disabilities can make things worse for inequality in at least one respect. This conclusion has crucial consequences for policy making. I recognise that the question remains about how this aspect should be weighed against the fact that scenarios of disability reduction promote utility - they contain more individuals with higher wellbeing - and against the fact that, under views that ascribe positive value to relations of equality, scenarios of disability reduction would also be, in one way, promoters of equality. (shrink)

Recent debate among bioethicists concerns the potential to enhance human beings’ physical or cognitive capacities by means of genetic, pharmacological, cybernetic, or surgical interventions. Between “transhumanists,” who argue for unreserved enhancement of human capabilities, and “bioconservatives,” who warn against any non-therapeutic manipulation of humanity’s natural condition, lie those who support limited forms of enhancement for the sake of individual and collective human flourishing. Many scholars representing these views also share a concern over the status and interests of human beings (...) with various types of cognitive and physical disabilities, some of which may be ameliorable by enhancement interventions. The question addressed in this paper is whether valuing the enhancement of human capabilities may be reconciled with valuing the existence and phenomenological experiences of human beings with various disabilities. Can we value enhanced capabilities without disvaluing those whose capabilities fall below a defined threshold of “normal function”? Furthermore, if certain forms of disability, particularly cognitive disabilities, negatively impact one’s flourishing, could the enhancement of one’s cognitive capacities through biotechnological means enhance one’s flourishing. (shrink)

By unpacking some of the dichotomies inherent in the concepts of vulnerability and disability, the article problematises some of the current legal approaches to disability in Finland. It argues that where used to single out population groups or individuals due to their embodied characteristics, the vulnerability paradigm can be seen to create binaries both among the persons with disabilities, and between the “vulnerable” persons with disabilities and the perception of a rational, self-standing and autonomous human being. To mitigate (...) such binaries, the article explores an agency-centred discourse of vulnerability, one that recognises the co-existence of agency and vulnerability and sees agency as dynamic and responsive to the societal support structures that surround all of us. One of the central arguments of the article is that generalised approaches do, however, not suffice to make agency a reality for all persons with disabilities. Given the extensive diversity of intra-group variations between persons with disabilities, individualised solutions are needed for agency to be possible for all. To overcome objectification and de-agencification – and to enhance agency – this diversity of situations, needs and contexts of lived-in realities of individuals also needs to be expressly reflected in the legal language in addressing disability. (shrink)

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging (...) master narratives about disability hinder the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

Chronically disabling health impairments affect an increasing number of people worldwide. In close relationships, disability is an interpersonal experience. Psychological distress is thus common in patients as well as their spouses. Dyadic coping can alleviate stress and promote adjustment in couples who face disabling health impairments. Much research has focused on dyadic coping with cancer. However, other health problems such as physical and sensory impairments are also common and may strongly impact couple relationships. In order to promote couples' optimal (...) adjustment to impaired health, the identification of disability-related relationship challenges is required. Furthermore, ways in which dyadic coping with these challenges may benefit couples could inform researchers and practitioners how to support couples in coping with health impairments. Accordingly, the aims of this study were to systematically review dyadic challenges and dyadic coping when one partner has a chronically disabling physical or sensory impairment. Out of 873 articles identified through database searches, 36 studies met inclusion criteria. The disability-related dyadic challenges identified in the review were changed roles and responsibilities within the couple, altered communication, compromised sexual intimacy, and reduced social participation. These challenges were reported to burden both partners and the couple relationship. Dyadic adjustment benefitted from a we-perspective, i.e., when couples viewed the disability as a shared challenge and engaged in conjoint dyadic coping. The results suggest that patient/care recipient and partner/caregiver roles should be de-emphasized and that disability should be recognized as an interpersonal experience. (shrink)

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

Research and practice about self-determination in the context of disability has centred on teaching skills and providing support to help people with impairments to be independent. However, limited research exists about the impact of Information and Communication Technologies, in particular social media and mobile devices, on the development of self-determination skills among people with disabilities. This paper presents the findings of a qualitative study which collected data from observations, a researcher diary, focus groups, individual interviews and data from (...) social media. The focus of the study was on young people with vision impairments who were transitioning to university life. The study found that the participants developed self-determination skills by using and adapting collaborative and interactive online tools and mobile devices according to their transition needs. This finding expands the understanding of the implications of new technologies for young people with disabilities’ personal development and the enhancement of self-determination. (shrink)

This article invites disability scholars to “get fat,” that is, to support the goals of the fat justice movement. I argue that the contemporary politics of fatness can productively be read through the lens of disability studies’ social model. At the same time, I mobilize feminist critiques of the social model to push fat disability studies toward a more in-depth engagement with the topics of health and illness. Additionally, I contend that feminist scholars’ accounts of our (...) personal relationships to fatness and disability can make crucial contributions to our scholarly work. These arguments take shape within a new interpretive framework that I introduce: “setpoint epistemology,” which brings together the feminist disability studies notion of “sitpoint theory” and the scientific concept of “setpoint theory.”. (shrink)

In "Frailty Triage: Is Rationing Intensive Medical Treatment on the Grounds of Frailty Ethical?," Wilkinson (2021) argues that the use of frailty scores in ICU triage does not necessarily involve discrimination on the basis of disability. In support of this argument, he claims, “it is not the disability per se that the score is measuring – rather it is the underlying physiological and physical vulnerability." While we appreciate the attention Wilkinson explicitly pays to disability in this (...) piece, we find the distinction between disability and underlying vulnerability untenable both theoretically and practically. In this peer commentary, we begin with a brief overview of research in philosophy of disability concerning the meaning of the concept itself. We argue that this research demonstrates that many forms of disability do not involve underlying vulnerabilities, and, furthermore, that Wilkinson equivocates between "disability" understood as a medical category vs. "disability" understood as a feature of lived experience. We reject Wilkinson’s distinction on these grounds and offer further considerations to avoid disability discrimination in emergency and crisis standards of care contexts. (shrink)

This article will review reasons why it is argued that the law on abortion on the grounds of disability is discriminatory, as well as recent unsuccessful attempts to address this discrimination in the law. These attempts include ones which would have moderately restricted access to abortion in certain limited cases, and another that might have opened to door to a number of different possibilities, including both to options that could have restricted access to abortion, and to other options that (...) might have increased access. Finally, this article will also examine reasons why some of the most important challenges surrounding disability equality cannot be sufficiently addressed through legal change alone. While there are strong reasons to support some form of change in the law, a more foundational change in values is necessary if we want to live in a more ethical society that is truly capable of welcoming disabled children. (shrink)

This article will review reasons why it is argued that the law on abortion on the grounds of disability is discriminatory, as well as recent unsuccessful attempts to address this discrimination in the law. These attempts include ones which would have moderately restricted access to abortion in certain limited cases, and another that might have opened to door to a number of different possibilities, including both to options that could have restricted access to abortion, and to other options that (...) might have increased access. Finally, this article will also examine reasons why some of the most important challenges surrounding disability equality cannot be sufficiently addressed through legal change alone. While there are strong reasons to support some form of change in the law, a more foundational change in values is necessary if we want to live in a more ethical society that is truly capable of welcoming disabled children. (shrink)

The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best (...) of the Western tradition's enthusiasm for progress: the idea of improving human lives through the practical application of scientific knowledge. (shrink)

I explore the usefulness of Martha Nussbaum's capabilities approach in regard to the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims at empowering people with disabilities by granting them a number of civil and political, but also economic, social and cultural rights. Implementing the CRPD will clearly be politically challenging and also very expensive for states. Thus, questions might arise as to whether the requirements set in the CRPD can be justified from an ethical perspective. (...) I will first investigate if Nussbaum's capabilities approach provides support for the rights claimed in the CRPD. Second, I will investigate to what extent Nussbaum's capabilities approach is a useful tool to set priorities among rights in the course of the implementation of the convention. This is an urgent question because seen realistically, it will not be possible to realize all rights at once and thus some rights need to receive greater priority than others. I will argue that the capabilities approach can be regarded as supporting the rights specified in the CRPD, but that it proves unable to guide the implementation process due to an insufficient grounding of the capabilities. Employing the capabilities approach thus leads to only limited results. (shrink)

This collection pays tribute to Jerome E. Bickenbach’s work that spans from philosophical and sociological issues to international legislation designed to support the rights of people with disabilities. Eight essays critically engage with Bickenbach’s work to further advance the discussions he has initiated throughout his career.

This paper asks whether statutory social insurance programs, which provide contributory tax-based income support to people with disabilities, are compatible with the disability rights movement's ideas. Central to the movement that led to the Americans with Disabilities Act is the insight that physical or mental conditions do not disable; barriers created by the environment or by social attitudes keep persons with physical or mental differences from participating in society as equals.The conflict between the civil rights approach and insurance (...) seems apparent. A person takes out insurance to deal with tragedy, such as premature death, or damage, such as accidental harm to an automobile or home. Social insurance, for example, the United States Social Security old-age and disability programs, consists of government-run insurance to cover risks of advanced age and disability for which the private market has not provided affordable coverage. But the civil rights approach to disability posits that disability is not a risk, not tragedy, and not a damage or defect. Instead it is a maladaptation of society to human variation. This paper argues that a justification remains for social insurance under the civil rights approach to disability, and further suggests that expansion of social insurance for disability is both compatible with disability rights principles and supported by wise public policy. (shrink)

This book uses the tools of analytic philosophy of disability (and Disability Studies more generally) and close readings of medieval Christian philosophical and theological texts in order to survey what these thinkers said about what today we call “disability.” The chapters also compare what these medieval authors say with modern and contemporary philosophers and theologians of disability. This dual approach enriches our understanding of the history of disability in medieval Christian philosophy and theology and opens (...) up new avenues of research for contemporary scholars working on disability. The volume is divided into three parts. Part I addresses theoretical frameworks regarding disability, particularly on questions about the definition(s) of “disability” and how disability relates to well-being. The chapters are then divided into two further parts in order to reflect ways that medieval philosophers and theologians theorized about disability. Part II is on disability in this life, and Part III is on disability in the afterlife. Taken as a whole, these chapters support two general observations. First, these philosophical theologians sometimes resist Greco-Roman ableist views by means of theological and philosophical anti-ableist arguments and counterexamples. Here we find some surprising disability-positive perspectives that are built into different accounts of a happy human life. We also find equal dignity of all human beings no matter ability or disability. Second, some of the seeds for modern and contemporary ableist views were developed in medieval Christian philosophy and theology, especially with regard to personhood and rationality, an intellectualist interpretation of the imago Dei, and the identification of human dignity with the use of reason. This volume surveys disability across a wide range of medieval Christian writers from the time of Augustine up to Francisco Suarez. It will be of interest to scholars and graduate students working in medieval philosophy and theology or disability studies. (shrink)