abstract Emerging from the political activism of disabled people's movements and mainly theorised by the scholar Michael Oliver, the social model of disability is central to current debates in Disability Studies as well as to related perspectives on inclusive education. This article presents a philosophical critique of the social model of disability and outlines some of its theoretical problems. It argues that in conceptualising disability as unilaterally socially caused, the social model presents a (...) partial and, to a certain extent, flawed understanding of the relation between impairment, disability and society, thus setting a framework that needs clarifications and extensions and presents limits to the achievement of its own aim of inclusion. This article concludes by suggesting that, despite its theoretical limits, the social model acts as a powerful and important reminder to face issues of inclusion as fundamental, moral issues. (shrink)

This paper challenges the view that there is one medical model of disability monolithically and oppressively imposed on disabled people. Because the presence of disability may be ambiguous in any given case, multiple actors, lay and professional, may invoke particular medical models of disability and advance competing claims about an individual’s disabilities and related needs. The literature for parents of disabled children is seen as a resource on which parents can draw in making claims about their children’s (...) disabilities and disability-related needs. Particular attention is given to the assumptions that this literature makes about the identity, resources and dispositions of the audience. Ultimately, these assumptions favor disability claims made by white, highly educated, upper-income parents. (shrink)

Critical diversity studies (CDS) can be found within “traditional,” or “established,” university disciplines, such as philosophy, as well as in relatively newer departments of the university, such as African studies departments, women’s and gender studies departments, and disability studies departments. In this article, therefore, I explain why philosophy of disability, an emerging subfield in the discipline of philosophy, should be recognized as an emerging area of CDS also. My discussion in the article situates philosophy of disability in (...) CDS by both distinguishing this new subfield’s claims about disability from the arguments about disability that mainstream philosophers make and identifying the assumptions about social construction and antiessentialism that philosophy of disability shares with other areas of CDS. The discussion is designed to show that a (feminist) philosophy of disability that draws upon the work of Michel Foucault will transform how philosophers understand the situation of disabled people. By drawing upon Foucault, that is, I offer philosophers of disability and other practitioners of CDS a new understanding of disability as an apparatus of power relations. -/- . (shrink)

Gender seems to be everywhere in the norms governing our social world: from how to be a good friend and how to walk, to children’s clothes. It is not surprising then that a difficulty in identifying someone’s gender is often a source of discomfort and even anxiety. Numerous theorists, including Judith Butler and Charlotte Witt, have noted that gender is unlike other important social differences, such as professional occupation or religious affiliation. It has a special centrality, ubiquity and (...) importance in social practices. This observation moves us away from the classic philosophical question ‘what is gender?’ towards a more underappreciated one: ‘what is the role of gender’? To answer this question, I introduce the notion of social standing, which refers to our ability to enter into social relations. Social standing distinctions are an important feature of human societies. However, our existing philosophical tools do not adequately capture this notion: it is neither a moral distinction, nor is it reducible to hierarchy. I offer a conception of our entry into social relations as always conditioned by various shared representational assumptions about social subjects. When individuals are anomalous with respect to those assumptions, their social standing is in doubt. This explains important forms of uncommon and peculiar treatment across societies. I argue that forms of social devaluation on the basis of severe and visible disability in our society are central examples of diminished social standing. In our social context, being hard to recognize through the matrix of gender makes one representationally anomalous and imperils one’s social standing. Gender plays a fundamental role because gender legibility is a precondition for full social standing. Gender norms parallel ‘ability norms’ in this respect, linking notions of normalcy in scholarship on gender and in scholarship on disability. Social standing also explains two key phenomena about gender. Firstly, it tells us why our social practices and norms are pervasively gendered. Given the performative and relational nature of gendered positions, this is necessary for constant gender legibility. Secondly, social standing recognition accounts for social anxiety phenomena around gender ambiguity. These phenomena are reactions to anomaly as a threat to our social systems of meaning. In the final part of my dissertation, I consider some political consequences of my view. Understanding this special role of gender allows us to identify a distinct type of backlash to feminist social change that is particularly insidious. It is not driven by the hierarchical investments of the most gender-privileged, but rather by our collective investment in gender as a system of social coordination. I explore 2000s ‘raunch feminism’ to argue for this hypothesis. Gender’s role as a conditioning parameter of social standing puts systematic pressure on all would-be social subjects to be gender legible. This requires that individuals position themselves in recognizably gendered ways within social practices. But when gender differentiation is eroded, this positioning becomes tricky. This gives rise to a disorientation I call ‘meaning vertigo’. Meaning vertigo prompts attempts at reinstating a clear gendered system. In the process, gender equality suffers a serious set-back. To make substantial feminist progress, we must unseat gender from its central position in social domains like sexuality. I suggest that the best way to do this may be by foregrounding other aspects of social identity as systems of social coordination, instead of working on gender directly. (shrink)

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by loss (...) of mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (shrink)

Based on a qualitative anthropological study of American mothers of infants and young children newly diagnosed with disability, this essay examines how mothers understand their children and define disability in relation to publicly available discourses of disability and identity. In seeking to improve their children’s opportunities in mainstream society, mothers appear to comply with the medical model. But over time and in the process of providing meaning to their experience, mothers retool models, drawing both on the (...) class='Hi'>social and minority group models’ rejection of a problem-based definition of disability as inherently caused by impairment and on their own intimate engagement with impairment as an embodied experience. (shrink)

I argue that despite criticism from some disability rights organizations, aid in dying is morally permissible. First, I suggest that disability-related concerns can be classified as emerging from one of two kinds of harm: person affecting, and personhood affecting. Second, I examine whether person affecting harm has occurred within those jurisdictions that have legalized aid in dying. I conclude that despite suggestions to the contrary, there is no evidence to demonstrate that people with disabilities have been adversely impacted (...) by legalized medical aid in dying. Third, I entertain these same arguments as a matter of principle and conclude the principled objections should not give us reason for concern. Fourth, I explore whether we have evidence to suggest the presence of increased personhood affecting harm where aid in dying is permissible. I suggest, through a focus on disability support services, that no evidence of social attitudes that diminish the moral worth of disabled people is present. Fifth, I examine whether we ought to have a principled concern with personhood affecting harm emerging from medical aid in dying. I conclude that to the contrary, to deny people with disabilities access to aid in dying constitutes a morally egregious form of personhood affecting harm. (shrink)

We need a feminist theory of disability, both because 16 percent of women are disabled, and because the oppression of disabled people is closely linked to the cultural oppression of the body. Disability is not a biological given; like gender, it is socially constructed from biologically reality. Our culture idealizes the body and demands that we control it. Thus, although most people will be disabled at some time in their lives, the disabled are made "the other," who symbolize (...) failure of control and the threat of pain, limitation, dependency, and death. If disabled people and their knowledge were fully integrated into society, everyone's relation to her/his real body would be liberated. (shrink)

Disability laws are crucial in ensuring a life of dignity for persons with disabilities. However, they remain limited and ineffective in the absence of adequate knowledge and awareness of the experiences with disability. The limitedness of disability laws has been spoken of in cases where the full realization of rights is subject to technological, philosophical, and market dynamics. In many cases, the law is also weakened by negative cultural beliefs and social perceptions of disability. And (...) then there are cases where disability laws perpetuate or tolerate oppression and violence. Despite their limitedness, disability laws offer normative content to facilitate engagement and critique for reform. In terms of what disability laws ‘ought’ to be, scholars write, that they should be about disabled people and the meanings provided by them. This objective has and can be fulfilled with the aid of disability studies that go beyond the inquiries of law with the right kind of research tools to theorize and re-theorize concepts and meanings about disability. Disability studies, in other words, represent the living conditions of disabled persons and the questions of how disability and/or impairment should be defined. This chapter examines the interaction between disability law and disability studies through the prism of the Convention on the Rights of Persons with Disabilities (CRPD). While discussing the models of disability (medical, social, human rights, and relational-community models) and agendas for reforming the CRPD, the chapter highlights the importance of new concepts and approaches. Further, the potential of disability laws, CRPD in particular, has been discussed keeping in mind the application of its core principles across different sectors (with a special focus on the Marrakesh treaty and copyright laws). (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical (...) debate. However, the social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)

Disability has been perceived as a social conditioning phenomenon and a sign system marking the body and mind. Accordingly, photographs of disability could shape our cultural perceptions about disability and disabled persons. In response to this position, we engage in a critical semiotic inquiry into press photographs of disability from The Star, a Malaysian mainstream English newspaper. We adapted Van Leeuwen’s social and visual actor networks to understand the visual techniques employed in depicting disabled (...) actors in these images. The depiction is examined in relation to their absence and/or presence in these published photographs. If absent, the inclusion of non-disabled is analyzed. When present, the social categorizations of roles, grouping and specific/generic depictions are investigated. Findings reveal disabled persons have been symbolically excluded and thus, socially othered. These exclusionary strategies imply disabling journalistic practices which should be cautioned as they could could potentially undermine the advocacy for an inclusive society. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

Does life have meaning? What is flourishing? How do we attain the good life? Philosophers, and many others of us, have explored these questions for centuries. As Eva Feder Kittay points out, however, there is a flaw in the essential premise of these questions: they seem oblivious to the very nature of the ways in which humans live, omitting a world of co-dependency, and of the fact that we live in and through our bodies, whether they are fully abled or (...) disabled. Our dependent, vulnerable, messy, changeable, and embodied experience colors everything about our lives both on the surface and when it comes to deeper concepts, but we tend to leave aside the body for the mind when it comes to philosophical matters. Disability offers a powerful challenge to long-held philosophical views about the nature of the good life, what provides meaning in our lives, and the centrality of reason, as well as questions of justice, dignity, and personhood. These concepts need not be distant and idealized; the answers are right before us, in the way humans interact with one another, care for one another, and need one another--whether they possess full mental capacities or have cognitive limitations. We need to revise our concepts of things like dignity and personhood in light of this important correction, Kittay argues. This is the first of two books in which Kittay will grapple with just how we need to revisit core philosophical ideas in light of disabled people's experience and way of being in the world. Kittay, an award-winning philosopher who is also the mother to a multiply-disabled daughter, interweaves the personal voice with the philosophical as a critical method of philosophical investigation. Here, she addresses why cognitive disability can reorient us to what truly matters, and questions the centrality of normalcy as part of a good life. With profound sensitivity and insight, Kittay examines other difficult topics: How can we look at the ethical questions regarding prenatal testing in light of a new appreciation of the personhood of disabled people? What do new possibilities in genetic testing imply for understanding disability, the family, and bioethics? How can we reconsider the importance of care, and how does it work best? In the process of pursuing these questions, Kittay articulates an ethic of care, which is the ethical theory most useful for claiming full rights for disabled people and providing the opportunities for everyone to live joyful and fulfilling lives. She applies the lessons of care to the controversial alteration of severely cognitively disabled children known as the Ashley Treatment, whereby a child's growth is halted with extensive estrogen treatment and related bodily interventions are justified. This book both imparts lessons that advocate on behalf of those with significant disabilities, and constructs a moral theory grounded on our ability to give, receive, and share care and love. Above all, it aims to adjust social attitudes and misconceptions about life with disability. (shrink)

En la actualidad Cuba desarrolla un Programa de Atención Integral al Paciente con Úlcera de Pie Diabético mediante el uso del Heberprot-P, esencial para disminuir la amputación y la discapacidad. El trabajo tiene el objetivo de realizar un diagnóstico sobre la aplicación del Heberprot-P en el Servicio de Angiología del Hospital Provincial Universitario Manuel Ascunce Domenech de Camagüey. Se realizaron encuestas a pacientes para identificar necesidades sentidas relacionadas con el tratamiento y para las actitudes manifiestas, y se hicieron entrevistas al (...) personal médico y de enfermería. El diagnóstico permitió corroborar la necesaria investigación con enfoque social del servicio de salud escogido a nivel territorial. Destaca elevar el trabajo de captación de pacientes desde el nivel primario de salud para garantizar un mayor alcance del programa, así como la trascendencia del apoyo familiar y la relación profesional de la salud- paciente a fin de lograr la calidad requerida. At present Cuba is developing a program concerning the care of patient with ulcer of the diabetes foot by means of Heberprot-P essential to reduce the amputation and disability. The aim of this paper is to carry out a diagnosis about social aspects of the application of the Heberprot-P in the Angiology service at Manuel Ascunce Domenech Hospital in Camaguey. Some surveys were carry out to identify certain needs related with the treatment and the attitude shown and on the other hand some interview were made to the medical and nursing staff. The diagnosis allowed to verify the need of the research with social approach. The paper highlight how to incorporate patients from the primary health level, in order this program has a higher scope and the importance of the family support and the professional relationship to accomplish the quality required. (shrink)

The philosophies of education serve as the guide of the teachers in handling the teaching-learning process. However, a belief will remain as a belief unless it is practiced. This study aimed to find the relationship between the philosophical beliefs and practices of the 30 teachers of the schools in San Roque, Mabini, Bohol - San Roque Elementary School and San Roque National High School, S.Y. 2019-2020. The study utilized a quantitative method descriptive survey research design. The research instrument used was (...) a self-constructed questionnaire in which the reliability was tested by a Cronbach’s Alpha using Statistical Package for the Social Science (SPSS) software. Simple percentage and weighted mean were some of the statistical treatments used. Kendall’s tau_b, a non-parametric test, was used to determine the correlation between philosophical beliefs and their equivalent pedagogical practices. All of the statistical treatments were also run using the SPSS software. Further, the researcher assured the proper observation of the research ethics protocol. Based on the results, the philosophies of Progressivism (3.63) and Perennialism (3.31) were the most and least prevailing philosophical beliefs, respectively. On the other hand, the most and least prevailing philosophies practiced are Progressivism (3.69) and Essentialism (3.19), respectively. Moreover, research findings revealed that there was a significant relationship between the philosophical beliefs of teachers and their pedagogical practices. In conclusion, this study claims that teachers’ pedagogical practices are dependent to their philosophical beliefs; and as the teachers believed on a particular philosophy of education, they practice it accordingly to the extent of their adherence to the belief. (shrink)

Recent programs aimed at the independent living of persons with disabilities, allow them to be costumers of sectors in which they have never had full access in the past. The Lisbon Treaty has distinctly recognized the existence of a community tourist area within the primary law, and CRPD has defined the principles of accessibility and accessible tourism as tools for the inclusion. In addition, tourism and transportation stakeholders must guarantee non-discriminatory services; they must approach persons with disabilities as every other (...) customer, by taking in consideration their needs and rights, especially when it comes to their accessibility, assistance, and information. Companies of transportation must cooperate with DPOs in order to define disability-related training procedures. (shrink)

In this study caring is shown to be a membershipbound activity to kin and gender categories with strong moral connotations. Being a daughter or being a son are good enough reasons for becoming a caregiver, more so for women than for men. Caregivers were interviewed within the research project The role of women in family care of disabled elderly conducted by the Social and Economic Research Department of INRCA, Ancona, Italy. Transcripts of the interviews were analyzed through a detailed (...) discourse analysis within an ethnomethodological framework. Interview data are treated as interactional encounters that occasion members to display relevant aspects of their identities and morally adequate images of being a caregiver. In the interview interaction, interlocutors display an orientation towards the production of a moral order in which duty and responsibilities are allocated on the basis of gender distinction. Males are generally described as not being responsible for caring tasks, except for situations in which females are absent or sick, that is, for serious reasons. Caregivers'' perception of time dedicated to caring is pervasive. Most caregivers said it occupied all their time, but gender differences were noticeable. Caring tasks are recognized as gender specific practices, thus failing to carry out these tasks is morally sanctionable when women are involved, but not so for men. Many caregivers described caring for older relatives as an intense source of stress, involving serious physical and psychological problems. The study on moral and identity issues related to caregiving highlights endangering constructions of caring. (shrink)

Rare neuromuscular diseases are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on (...) the QoL levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group, which participated in the intervention, and a control wait list group. QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability. (shrink)

Well-being is an important policy concept including in discussions around the use of artificial intelligence, machine learning and robotics. Disabled people experience challenges in their well-being. Therefore, the aim of our scoping review study of academic abstracts employing Scopus, IEEE Xplore, Compendex and the 70 databases from EBSCO-HOST as sources was to better understand how academic literature focusing on AI/ML/robotics engages with well-being in relation to disabled people. Our objective was to answer the following research question: how and to what (...) extent does the AI/ML/robot literature we covered include well-being in relation to disabled people? We found 2071 academic abstracts covering AI/ML and well-being, and 1055 covering robotics and well-being. Within these abstracts, only 39 covered AI/ML and 48 robotics and well-being in relation to disabled people. The tone of the coverage was techno-positive and techno-optimistic arguing that AI/ML/robotics could improve the well-being of disabled people in general or improve well-being by helping disabled people overcome their ‘disability’ or make tasks easier. No negative effects that AI/ML/robotics could have or has had on the well-being of disabled people were mentioned. Disabled people were portrayed only within patient, client, or user roles but not in their roles as stakeholders in the governance of AI/ML/robotics discussions. This biased and limited coverage of the impact of AI/ML/robotics on the well-being of disabled people disempowers disabled people. (shrink)

The article discusses the key stages of the development of ‘disability studies’. Public awareness of the problems of inclusion, as overcoming social inequality, is in the stage of formation in Ukraine and needs a socio-philosophical implementation. he main purpose of the article is to analyze the problem of social space of the city, which is convenient for the life of citizens with different set of opportunities, and the expediency of including disability as a social phenomenon (...) in the broad philosophical context of study. The field of thinking about the city in the study is outlined in the following concepts: the right to the city, the urban space for human development, social communications and the just principles of being. It is important to understand the vector of the development of the socio-cultural field of the city in terms of overcoming the "soulless indifference" (bliss) and for the development of communication between the citizens. The novelty of the work is determined by the rationale for the transformation of traditional disability models in modern conditions of social development. The relevance of the study is associated with the complexity of the phenomenon of disability, insufficient knowledge of the factors and problems of inclusion of people with special needs in society. With the growing number of people with disabilities in society, the problem of developing a culture of disability becomes urgent, the low level of which should be considered a challenge. A culture of disability implies a mutual desire of people with disabilities and society to move towards each other. The practical aspect of the research is related to the need for change of social consciousness, inclusion of persons with disabilities in the social space, development of social competences of people with disabilities and transformation of these people from the object of social assistance into an active subject and participant of the processes taking place in society., implementation of projects based on justice and citizenship. (shrink)

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

People with disabilities suffer from pervasive inequalities in employment, education, transportation, housing, and health care compared to those who are not disabled. Moreover, people with disabilities are often subject to unjustified stigma and pity. In this paper, I will explain why these disadvantages violate relational egalitarian principles of justice. As I will show, my argument can account for both kinds of inequality that disabled people face.

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also (...) a power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (shrink)

Concepts We thank all three commentators for extremely constructive, insightful, and gracious commentaries. We cannot address all their valuable points. In this response, we elucidate and relate the concepts of addiction, disease, disability, autonomy, and well-being. We examine some of the implications of these relationships in the context of the helpful responses made by our commentators. We begin with the definitions of the relevant concepts which we employ: ¥? ? ? Addiction (Liberal Concept): An addiction is a strong appetite. (...) ¥? ? ? Appetites: An appetite is a disposition that generates desires that are urgent, oriented toward some rewarding behavior, periodically recurring, often in predictable circumstances, sated temporarily by their fulfillment, and generally provide pleasure. ¥? ? ? Disease (Naturalistic Concept): A disease is some biological or psychological state that results in subfunctioning of the organism in a given set of environmental and social circumstances, C. The reference class is a natural class of organisms of uniform functional design; specifically, an age group of a sex of a species. A normal function is a part or process within members of the reference class and is a statistically typical contribution by it to their individual survival and reproduction (Boorse 1977, 1997). ¥? ? ? Disability (Welfarist Concept): A disability is a relatively stable biological or psychological state that tends to reduce the amount of well-being that this person will enjoy in a given set of environmental and social circumstances (Savulescu and Kahane 2009; Kahane and Savulescu, 2009). ¥? ? ? Autonomy (Rationalist Concept): A person rationally desires or values some state of affairs if and only if he or she desires that state of affairs while (1) being in possession of all relevant. (shrink)

Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders. FASD is a spectrum of structural, functional, and neurodevelopmental problems with often lifelong implications, affecting communities worldwide. It is a leading preventable form of intellectual disabilities and therefore warrants effective prevention approaches. However, well-intended FASD prevention can increase stigmatization of individuals with FASD, women who consume or have consumed alcohol during pregnancy, and non-biological parents and guardians of individuals with FASD. This narrative review surveyed the literature on stigmatization related (...) to FASD. Public stigma appears to be the most common form of stigma studied. Less is known about FASD-related self-stigma, stigma by association, and structural stigma. Accordingly, the current literature on FASD-related stigma does not appear to provide sufficient guidance for effectively reducing FASD-related stigma. However, lessons can be learned from other related health topics and the use of a systematic approach for the development of health promotion programs, namely Intervention Mapping. (shrink)

In academic philosophy and popular culture alike, pity is often framed as a virtue or the emotional underpinnings of virtue. Yet, people who are the most marginalized and, hence, most often on the receiving end of pity, assert that it is anything but an altruism. How can we explain this disconnect between an understanding of pity as a virtuous emotion versus a social harm? My paper answers this question by showing how pity is not only an emotion, but also (...) a power relation. Using the ideas of Sartre’s Anti-Semite and Jew, I explain how pity is understood as harmful by the one pitied because he is acutely aware of how it obscures his unequal power relation to the pitier and denies the pitier’s role in creating this domination. This is all done with an eye toward what I see as the quintessential class of people who are harmed by pity: people with disabilities. (shrink)

The rhetoric of the social model of disability is presented, and its basic claims are critiqued. Proponents of the social model use the distinction between impairment and disability to reduce disabilities to a single social dimension—social oppression. They downplay the role of biological and mental conditions in the lives of disabled people. Consequences of denying biological and mental realities involving disabilities are discussed. People will benefit most by recognizing both the biological and the (...) class='Hi'>social dimensions of disabilities. (shrink)

Feminists have indicated the inadequacies of bioethical debates about human embryonic stem cell research, which have for the most part revolved around concerns about the moral status of the human embryo. Feminists have argued, for instance, that inquiry concerning the ethics and politics of human embryonic stem cell research should consider the relations of social power in which the research is embedded. My argument is that this feminist work on stem cells is itself inadequate, however, insofar as it (...) has not incorporated an analysis of disability into its considerations of the ethical and political issues that surround the phenomena. Thus, I consider claims that disability theorists and anti-disability activists have made about the research. I conclude by indicating that stem cell research must be situated within a cultural matrix that operates in the service of normalisation. (shrink)

The contrast between third- and first-personal accounts of the experiences of autistic persons has much to teach us about epistemic injustice and epistemic agency. This paper argues that bringing about greater epistemic justice for autistic people requires developing a relational account of epistemic agency. We begin by systematically identifying the many types of epistemic injustice autistic people face, specifically with regard to general assumptions regarding autistic people’s sociability or lack thereof, and by locating the source of these epistemic injustices in (...) neuronormativity and neurotypical ignorance. We then argue that this systematic identification pushes us to construe epistemic agency as resulting from a fundamentally relational and dynamic process between an individual, others around them, and their social, cultural, or institutional environment, rather than as a fixed and inherent property of individuals. Finally, we show how our relational account of epistemic agency allows us to introduce the novel concepts of epistemic disablement and epistemic enablement. We argue that these two concepts allow us to more accurately track the mechanisms that undermine or facilitate epistemic agency, and thereby to better understand how epistemic injustice arises and to design more effective interventions to foster greater epistemic justice for autistic people. (shrink)

The biomedicalist conceptualization of disablement as a personal medical tragedy has been criticized by disability studies scholars for discounting the difference between disability and impairment and the ways disability is produced by socio-environmental factors. This paper discusses prospects for partnerships between disability studies teaching/research and medical education; addresses some of the themes around the necessity of critical disability studies training for medical students; and examines a selection of issues and themes that have arisen from (...) class='Hi'>disability education courses within medical schools globally. The paper concludes that providing there is a commitment from senior management, universities are well positioned to apply both vertical and horizontal approaches to teaching disability studies to medical students. (shrink)

Pre-implantation genetic diagnosis became well known in Malaysia after the birth of the first Malaysian ‘designer baby’, Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims to explore participants’ perceptions of the (...) future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the ‘slippery slope’ of PGD were raised during the discussions. This study also highlights participants’ legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk–benefit balance, since its application will impact the lives of so many people in the society. (shrink)

The dominance of the biomedically informed view of disability, genetics, and diagnosis is explored. An understanding of the social nature of disability and genetics, especially in terms of oppression, adds a richer dimension to an understanding of ethical issues pertaining to genetics. This is much wider than the limited question of whether or not such technology discriminates. Instead, it is proposed that such technology will perpetuate the oppression and control of people with disability, especially if the (...) knowledge of people with disability is not utilised in bioethical debates. (shrink)

Pre-implantation genetic diagnosis became well known in Malaysia after the birth of the first Malaysian ‘designer baby’, Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims to explore participants’ perceptions of the (...) future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the ‘slippery slope’ of PGD were raised during the discussions. This study also highlights participants’ legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk–benefit balance, since its application will impact the lives of so many people in the society. (shrink)

This paper revisits the dynamic discussion about journalism’s role in representing and amplifying disability arts at the 2019 Cripping the Arts Symposium. Chronicling the dialogue of the “Representation” panel which included artists, arts and culture critics, journalists, and scholars, it reveals how arts and culture coverage contributes to the cultivation of disability, D/deaf, and mad art. Given that the relationship between journalism and disability communities continues to be fractured in Canada, speakers were invited to reflect on journalism (...) and disability arts in relation to their own engagement with media as subjects, authors, and critics of disability arts reviews. The methods for presentation were cripped in multiple ways to provide the fullest access possible. The panel concluded with examples of ableist fault lines in representation practices where the disabled figure is an absent “ghost” in journalistic representation, warnings against journalistic reliance on traditional and objective narratives, and a call for artists to claim and write their own stories. Ultimately, disabled, D/deaf, and mad artists need both control over artistic endeavours and output and influence over representation. This article reconnects journalism and disability communities, ultimately demonstrating that representation is a critical, co-constitutive process that can become more aesthetically and politically oriented toward social justice in its focus on disability, D/deaf, and mad arts. (shrink)

Trainees with disabilities in health-related professions are often subjected to structural ableism in medicine: the discriminatory manifestation of lowered expectations towards people with disabilities by medical professionals. In this case study, I reflect on my experiences as the first individual with significant disabilities to be offered a postdoctoral fellowship in clinical bioethics at the National Institutes of Health. I focus on the following question: What arrangements need to be in place in order for someone with my level of disability (...) to thrive as a clinical bioethicist? By telling my story, I show how the process of accommodating trainees with disabilities often requires creative problem-solving and a considerable amount of institutional resources. I also describe the team-based method that my mentors and I developed to enable me to complete rotations on the NIH’s bioethics consultation service. If more trainees with disabilities are to succeed in clinical bioethics trainee programs, the field will have to grapple with how to develop an infrastructure for providing disability related support across training programs. This article is the beginning of a dialogue about how to build such an infrastructure. (shrink)

Although spiritual practices such as prayer are engaged by many to support well‐being and coping, little research has addressed nurses and prayer, whether for themselves or facilitating patients' use of prayer. We conducted a qualitative study to explore how prayer (as a proxy for spirituality and religion) is manifest—whether embraced, tolerated, or resisted—in healthcare, and how institutional and social contexts shape how prayer is understood and enacted. This paper analyzes interviews with 21 nurses in Vancouver and London as a (...) subset of the larger study. Findings show that nurses' kindness can buffer the loneliness and exclusion of ill health and in this way support the “spirit” of those in their care. Spiritual support for patients rarely incorporated prayer, in part because of ambiguities about permission and professional boundaries. Nurses' engagement with prayer and spiritual support could become a politicized site of religious accommodation, where imposition, religious illiteracy, and racism could derail person‐centered care and consequently enact social exclusion. Spiritual support (including prayer) sustained nurses themselves. We propose that nursing's equity‐oriented knowledge encompass spirituality and religion as sites of exclusion and inclusion. Nurses must be supported to move past religious illiteracy to provide culturally and spiritually sensitive care with clarity about professional boundaries and collaborative models of spiritual care. (shrink)

This paper focuses on the integration of generic software such as enterprise resource planning into organisational life. These applications have gained prominence as the IT systems of choice in many organisations. The perspective that dominates the literature studying these applications reflects a rationality based on alignment of the software and organisational processes and fails to consider the ethical issues that arise when a new work system is being constructed, such as the possibilities for end‐user participation. Drawing on the strand of (...) research that studies implementations of new technologies as social relations, this paper considers the experiences of end user groups as they engage in adaptation of the software and embed technology in contexts of local use. Design and use activities are complex and multifaceted and the embedding of software for local use represents an overlap between them. This paper explores whether the shift towards large scale generic software allows for a blurring of a boundary between what are construed as design activities and use activities in applications for office work. It is significant to the construction of this boundary that office work is gendered female in the U.K. where clerical and secretarial work is usually done by and considered to be suited to women. The paper draws on a case study of the introduction and integration of a generic software application for supporting the administration of student records at a UK university to explore the social relations of end‐user participation in the implementation of these software packages. The paper presents an analysis of the implementation activity, IToffice worker relations, and the different constructions of skills and knowledge understood to be required as the workers attempted to deal with this software application. (shrink)

It has been argued that dignity is a useless concept that adds nothing to existing moral vocabulary: it is just a slogan. In this chapter, it is argued that only a concept of dignity can adequately explain a serious moral wrong inflicted on people with disabilities, namely their relegation to inferior social status. Far from being useless, it uniquely explains why fundamental changes to social relations are needed to secure justice. Moreover, dignity matters just as much for (...) people with cognitive impairments as it does for everyone else. As such, fraught debates about the moral standing of people with severe cognitive impairment are largely irrelevant to explaining why they, too, should be treated as social equals. (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)

This paper explores the relationship between disability and quality of life and some of its implications for bioethics and healthcare. It focuses on the neglected perfectionist approach that ties well-being to the flourishing of human nature, which provides the strongest support for the common view of disability as a harm. After critiquing the traditional Aristotelian version of perfectionism, which excludes the disabled from flourishing by prioritizing rationalistic goods, I defend a new version that prioritizes the social capacities (...) of human nature and the goods of personal relationship. This relationship-centered perfectionism is able to accommodate and explain disabled thriving. I also show how these issues have important implications for specific bioethical debates and clinical practices, using a cluster of issues related to Down syndrome as timely illustrations. My goal is to sketch a perfectionist theory that gives a more plausible account of the relationship between disability and well-being, and that provides better practical guidance in cases involving judgments about the quality of disabled lives. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Pathology of the Mind: Disorder Versus DisabilityRichard G. T. Gipps (bio)Keywordsorder, disorder, ability, disability, mental illnessAlfredo Gaete (2008) describes mental disorders as impairments in intentionality, phenomenal consciousness, and intelligence that cause harm to the affected person. I found persuasive Gaete’s claim that the concept of ‘mental disorder’ is best understood as nontheoretical and nontechnical. I also find compelling his argument that a previous contribution of my own—which relied (...) in part on specifying different senses of ‘disorder’ in psychological, physiological, and social cases—was misguided. Further, his suggestion that we ought at least to attempt analysis in terms of necessary and sufficient conditions before we seek out less definitive characterizations (in terms of family resemblances) also persuades me, although I find myself less sanguine than he about the general possibility of achieving such analyses.One of Gaete’s principal claims is that mental disorder is helpfully understood in terms of an absence of a capacity—that is, as a disability. There are two related objections—or two aspects of the same objection—that I would like to offer the author with respect to this claim. These may well not be conclusive, but will I hope at least function as foils against which the author can usefully sharpen his argument. One objection suggests that there is a viable distinction between the concepts of mental disorder and mental disability, as commonly used in clinical contexts, which the account offered seems unable to respect. The second suggests that the account may not be able to theorize what is argued to be the essential contribution of the concepts of order and disorder (as opposed to ability and disability) to the everyday concept of mental disorder. Accordingly, it questions the power of a disability approach such as Gaete’s to capture the essential nature of mental disorder.In his paper, Gaete classifies mental retardation and developmental, or (what in the United Kingdom are known as) learning, disabilities (autism, etc.) as cases of mental disorder. I found this surprising because it is not common linguistic practice in the psychological circles in which I operate. It would also seem to make a nonsense of commonly accepted ideas like: “Mental disorders are more likely to occur in patients with developmental disabilities (e.g., in autism, Asperger, or Down syndrome) than in the general population.” (For an example, see Campbell and Malone [1991]). On Gaete’s classification, it would appear that people with autism eo ipso have a mental disorder, and [End Page 341] hence the commonly accepted idea would need to be interpreted as merely a statement about comorbidities of different disorders of the same general (i.e., mental) type. But that is not, I believe, how the term is commonly used, and Gaete’s suggestion must therefore be treated as revisionary rather than descriptively analytical.One way of reconstructing a rationale underlying the distinction between mental disabilities and mental disorders is as follows. A developmental disability involves a failure of (certain aspects of) the mind to grow and reach an expected level or type of organization. A mental disorder by contrast involves a disturbance or disorganization (not simply an impoverishment) within the mind at whichever level of organization it has reached. As the mind develops, and reaches new levels or types of organization, the forms which mental disorders may take accordingly change.Autism and schizophrenia provide helpful illustrations of this distinction. Autism represents a failure of (among other things) the social mind to develop in childhood. The person with moderate to severe autism may attain at best a very shaky grasp on the realities of other minds and social conventions. That is, the degree of mental structure they obtain—their social competencies or capacities—will likely remain limited. It is this fundamental deficit that marks out the disability, and not the social anxieties or other such disturbances that can beset the autistic person.Schizophrenia, by contrast, tends to occur at late adolescence, when the individual has developed higher levels of—albeit often fragile—mental structure. Yet it is not the fragility of such mental structure, but rather the disruptions that can occur within such structures as have developed, that mark them out... (shrink)

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

In this article I explore disability as far more than individual private tragedy, suggesting it has a social location and reproduction. Within this context we look at the power relations associated with bioethics and its largely uncritical use of the biomedical model. Within that context the topics of genetics, euthanasia, and biotechnology are explored. In examining these topics a social account of disability is proposed as rejected knowledge. Accordingly we explore the political nature of bioethics (...) as a project. (shrink)