People with mild to moderate intellectual or multiple disabilities may have serious difficulties in accessing leisure events, managing communication exchanges with distant partners, and performing functional daily activities. Recently, efforts were made to develop and assess technology-aided programs aimed at supporting people in all three areas. This study assessed a new technology-aided program aimed at helping four participants with intellectual and multiple disabilities in the aforementioned areas. The program, which was implemented following a non-concurrent multiple (...) baseline across participants design, relied on the use of a smartphone or tablet connected via Bluetooth to a two-switch device. This device served to select leisure and communication events and to control the smartphone or tablet’s delivery of step instructions for the activities scheduled. Data showed that during the baseline phase, three participants failed in each of the areas while one participant managed to access a few leisure events. During the intervention phase, all participants managed to independently access leisure events, make telephone calls, and carry out activities. These results suggest that the program might be a useful tool for helping people with intellectual and multiple disabilities improve their condition in basic areas of daily life. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis (...) that values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

Abstract‘Social inclusion’ is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. ‘Social inclusion’ can refer simply to full equal rights, but more often it is taken to mean something like ‘community participation’. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, (...) that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise. (shrink)

This paper expresses wonder about how bodies in motion can lead towards an understanding of lived meaning in silent lifeworlds. In such lifeworlds, expressions are without words, pre-symbolic, and thus embodied. To address the wonder, phenomenological philosophy and phenomenological methodology were employed to frame an approach that acknowledges lives with disabilities as qualitatively different from, and yet not inferior to, nor less imbued with meaning than, lives without.The paper focuses on spatiality as decisive in determining possibilities for persons to (...) express their perspectives through a wide range of movements. Movements take place in the continuum between the spatiality of positions as objective bodily sensations and the spatiality of situations as embodied interactions with others and the world. Thus, in order to access the perspectives of students with severe and multiple disabilities, transitions between and movements within different spaces are examined.Approaching an educational everyday life where students are restricted in the possibilities available to them for moving in and out of spaces, the study reported points to the importance of recognizing the relationship between subjective movements and the spaces enveloping them as what creates a spatiality that is meaningful to the subject. It is accordingly suggested that choosing which spaces to include in educational contexts are formative choices that express a view of humanity. The paper also emphasizes the importance of recognizing temporality as a pedagogical resource when detecting and acting upon students’ changing expressions. (shrink)

BackgroundAs moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research.MethodsA multiple-case study was conducted in a care organization for people (...) with intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level.ResultsAccording to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up.ConclusionsConcretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences. (shrink)

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)

The sub-title of a recent book on “belonging” for people with profound intellectual and multiple disabilities (PIMD) is “Pushing the boundaries of inclusion.” One aim of this paper is to establish where at least one of these boundaries lies. Enabling profoundly disabled people to be together with others is often inspired by the ideal that anybody and everybody can be fully included in their relationships with others. This inclusive ideal can take the form of relational equality—including people with (...) PIMD as equals in our relationships with them. I explore the scope and limits of relational equality, and where, as with some profoundly disabled people, equality is out of reach, I look at two relational alternatives. (shrink)

The sub-title of a recent book on “belonging” for people with profound intellectual and multiple disabilities (PIMD) is “Pushing the boundaries of inclusion.” One aim of this paper is to establish where at least one of these boundaries lies. Enabling profoundly disabled people to be together with others is often inspired by the ideal that anybody and everybody can be fully included in their relationships with others. This inclusive ideal can take the form of relational equality—including people with (...) PIMD as equals in our relationships with them. I explore the scope and limits of relational equality, and where, as with some profoundly disabled people, equality is out of reach, I look at two relational alternatives. (shrink)

Dis/Abling Practices: Rethinking Disability The paper discusses how ordinary acts of everyday life make up the complex and contingent scenarios of disabilities that create enabling and disabling (dis/abling) practices. Drawing on qualitative empirical data the societal visibility and relevance of dis/abling practices are analyzed by connecting disability studies and sociological ideas with insights from Science and Technology Studies (STS). The essay explores how (visual) dis/ability is the outcome of human and non-human configurations and suggests that dis/ability can be understood (...) neither as an individual bodily impairment nor as a socially attributed disability. Rather, dis/ability refers to complex sets of heterogeneous practices that (re-)associate bodies, material objects, and technologies with sensory practices. These practices, the paper concludes, draw attention to the multiple processes that (re-) concatenate the conduct of human affairs. (shrink)

This article explores twelve short narrative films created by women and trans people living with disabilities and embodied differences. Produced through Project Re•Vision, these micro documentaries uncover the cultures and temporalities of bodies of difference by foregrounding themes of multiple histories: body, disability, maternal, medical, and/or scientific histories; and divergent futurities: contradictory, surprising, unpredictable, opaque, and/or generative futures. We engage with Alison Kafer's call to theorize disability futurity by wrestling with the ways in which “the future” is normatively (...) deployed in the service of able-bodiedness and able-mindedness, a deployment used to render bodies of difference as sites of “no future”. By re-storying embodied difference, the storytellers illuminate ongoing processes of remaking their bodily selves in ways that respond to the past and provide possibilities for different futures; these orientations may be configured as “dis-topias” based not on progress, but on new pathways for living, uncovered not through evoking the familiar imaginaries of curing, eliminating, or overcoming disability, but through incorporating experiences of embodied difference into time. These temporalities gesture toward new kinds of futures, giving us glimpses of ways of cripping time, of cripping ways of being/becoming in time, and of radically re-presencing disability in futurity. (shrink)

Challenging the undesirability of disability is a shared responsibility that requires us to imagine disability differently. In order to imagine disability differently, we need to understand how the neoliberal hegemonic social imagination—key to processes that create good disabled and able-bodied neoliberal subjects—works to curtail who is perceived to have a desirable body. In order to desire disability differently, we must begin with marginal, heterotopic imaginations whereby disability is not something to overcome, but rather is part of a life worth living. (...) In this article, I build on Foucault’s concepts of heterotopia, milieu, and the government of things, and Karen Barad’s agential realism, as well as draw on the work of Mel Chen and Rod Michalko in order to argue that the heterotopic imagination reconfigures how we consider disability to emerge, with whom, and where. By mobilising the heterotopic imagination, we can come to recognise that disability does not emerge as an individualised human body, but rather is an intracorporeal, non-anthropocentric multiplicity. To desire disability differently through the heterotopic imagination is not simply to allow the current formulation of disability to become desirable, but rather to radically alter how we desire disability, in addition to altering what disability is, how it is practised, and what it can be. (shrink)

While rapid advances in artificial intelligence hiring tools promise to transform the workplace, these algorithms risk exacerbating existing biases against marginalized groups. In light of these ethical issues, AI vendors have sought to translate normative concepts such as fairness into measurable, mathematical criteria that can be optimized for. However, questions of disability and access often are omitted from these ongoing discussions about algorithmic bias. In this paper, I argue that the multiplicity of different kinds and intensities of people’s disabilities (...) and the fluid, contextual ways in which they manifest point to the limits of algorithmic fairness initiatives. In particular, existing de-biasing measures tend to flatten variance within and among disabled people and abstract away information in ways that reinforce pathologization. While fair machine learning methods can help mitigate certain disparities, I argue that fairness alone is insufficient to secure accessible, inclusive AI. I then outline a disability justice approach, which provides a framework for centering disabled people’s experiences and attending to the structures and norms that underpin algorithmic bias. (shrink)

The Life Worth Living investigates the exclusion of and discrimination against disabled people across the history of Western moral philosophy. Building on decades of activism and scholarship, Reynolds shows how longstanding views of disability are misguided and unjust, and he lays out a vision for an anti-ableist moral future. The introduction and first chapter are available to download here. -/- Table of Contents: Introduction: The Ableist Conflation. Part I: Pain. 1. Theories of Pain. 2. A Phenomenology of Chronic Pain. Part (...) II: Disability. 3. Theories of Disability. 4. A Phenomenology of Multiple Sclerosis. Part III: Ability. 5. Theories of Ability. 6. A Phenomenology of Ability. Conclusion: An Anti-Ableist Future. (shrink)

Building on Deleuze’s theories of the becoming of bodies, and notions of the geographic maturity of the disabled body we formulate an emplaced model of disability wherein bodies, social expectations and built form intersect in embodied experiences in specific environments to increase or decrease the capacity of disabled children to act in those environments. We join a growing effort to generate a more comprehensive model of disability, which moves beyond a binary between the individual and the social. Drawing on in-depth (...) case studies conducted with 13 physically disabled children, we consider the intersections between their primary environments (homes, schools and neighbourhoods) and the multiple subjectivities they embody. Ultimately we make a case about the importance of responsive, situated models of subjectivity for the development of adaptations, and that physical and social adaptations must respond to these children’s complex and varied needs and desires. (shrink)

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability over the last fifty (...) years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

Purpose– The purpose of this paper is to create a conceptual framework, based on a structured literature review, to analyze the digital disability divide and help find solutions for it. A digital disability divide exists between people with impairments and those without impairments. Multiple studies have shown that people without impairments are less likely to own a computer or have an Internet connection than are people with impairments. However, the digital disability divide is seen in relation not only to (...) access but also to accessibility and use. For people with impairments, new technological innovations offer solutions for everyday challenges, such as finding information, communicating with others and using electronic services.Design/methodology/approach– For this study, 4,778 conference and journal publications were systematically analyzed.Findings– A number of key findings emerged. This field is relatively new, and the literature is highly focused on the technological and social aspects of the digital disability divide, with technology and societal attributes being the core sub-attributes for a comprehensive model. The previous literature did not significantly study the consequences of the financial situation of individuals; rather, the predominant focus was on the have-nots and countries with low income potentials. Furthermore, motivation reveals a compelling case within the digital disability divide subset.Originality/value– The review provides a consolidated view of past research on the general topic of the digital disability divide and the attributes that affect it. (shrink)

This paper examines the impact of disability on wellbeing and presents arguments against the mere-difference view of disability. According to the mere-difference view, disability does not by itself make disabled people worse off on balance. Rather, if disability has a negative impact on wellbeing overall, this is only so because society is not treating disabled people the way it ought to treat them. In objection to the mere-difference view, it has been argued, roughly, that the view licenses the permissibility of (...) causing disability and the impermissibility of causing nondisability. In her recent article, “Valuing Disability, Causing Disability”, Elizabeth Barnes attempts to show that this causation-based objection does not succeed. We disagree and argue why. We begin by explaining that in order to defeat the causation-based objection it does not suffice to show that it is not always true that the mere-difference view licenses causing disability. Rather, license in some cases, in a way that undermines the plausibility of the mere-difference view, would be sufficient for the causation-based objection to succeed. Then our discussion turns to an important challenge for proponents of the causation-based objection: Some defenders of the mere-difference view are prepared to simply accept the counterintuitive implications of their position. A dialogue with such proponents of the mere-difference view requires arguments with independent traction. We present several such arguments to the effect that the mere-difference view needs to be significantly reduced in scope – and may turn out to be false altogether. (shrink)

Brain–Computer Interface research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design. The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain (...) a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering. (shrink)

Dehumanization Studies is a burgeoning field that has much to teach Critical Disability Studies and philosophers of disability. Conversely, a critical disability perspective can inform and challenge theoretical approaches to dehumanization. This paper attempts to forge a conversation between these interdisciplinary areas by exploring the phenomenon of dehumanization in relation to people with intellectual disabilities. It begins with a definition of disability dehumanization, and then explores the ways in which this form of dehumanization functions dynamically at multiple levels, (...) drawing from the history of ID and contemporary examples in moral philosophy. Ultimately it argues that it is essential to recognize the moral relevance of being human in order to challenge and prevent forms of disability dehumanization and de­fends this idea in the face of two objections (speciesism and posthumanism). (shrink)

Disabled people frequently find themselves in situations where their quality of life and wellbeing is being measured or judged by others, whether in decisions about health care provision or assessments for social supports. Recent debates about wellbeing and how it might be assessed (through subjective and/or objective measures) have prompted a renewed focus on disabled people’s wellbeing because of its seemingly ‘anomalous’ nature; that is, whilst to external (objective) observers the wellbeing of disabled people appears poor, based on subjective assessments, (...) people with disabilities report a good quality of life. In this paper, I examine an article by the philosopher Dan Moller in which he seeks to explain this ‘disability paradox’. Despite agreeing with his analysis that there is more to what people value than happiness, his explanation reflects some of the difficulties presented in philosophical accounts which seek to understand the lives of disabled people: this includes an analysis which fails to problematise definitions of wellbeing and who has the ‘voice’ to do the defining; which negates the multiple identities and subject positions that disabled people occupy; and which lacks recognition of the social contexts which mediate disabled people’s lives. I suggest that there is a need to incorporate disabled people’s voices into research which deepens our empirical knowledge about the relationship between impairment and wellbeing, including the social circumstances that shape disabled people’s agency. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 87-89 [Access article in PDF] Death, Disability, and Dialogue Gerald Casenave IN THEIR INSIGHTFUL and constructive review, "Death, Disability, and Dogma," Jennifer Clegg and Richard Lansdall-Welfare manage to create the very dialogue that they argue is lacking. Their contention is that the lack of dialogue between different realms of discourse has led to rigid service response by caregivers that attempt to address losses (...) experienced by individuals with intellectual disabilities. They argue that this situation arises because of the complexity of the cultural meaning of death and the uncertainty of the meaning for individuals with intellectual disabilities.Their essay, in itself, is powerfully cross-disciplinary. They review the concept of bereavement from different perspectives: social science research, psychiatric practice, and underlying cultural meanings. This review indicates that social science research has moved from attempting to develop definitive statements about the meaning of death. From their review, it is possible to discern that there may have been an underlying positivist orientation that assumed that a univocal meaning to the loss experience can be discovered. But the only universal fact about death is that there is a loss. It is a significant life event. Going all the way back to the early work of Holmes and Rahe (1967), it is clear that the impact and meaning of the same life event varies from individual to individual. There are multiple layers of meaning that include at least one's larger culture, subgroup values, family meaning, and finally individual interpretation. Clegg and Landsdall-Welfare see the current findings of social science as pointing to the need to be sensitive to the meaning of the death event for the specific individual. It appears to be inappropriate to impose normative stages onto an individual's grief experience.The finding from the review of psychiatric investigation of loss experiences is that bereavement can contribute to health problems. The loss experience is not necessarily pathologic. This compares to the acknowledgement that depression and anxiety are not necessarily illnesses to be treated, but basic human coping mechanisms that can become problematic. Similarly, the loss experience can be a traumatic experience with negative health implications.Clegg and Landsdall-Welfare acknowledge the limited nature of their review of the role of culture in the meaning of the loss experience. But even so, it is clear that the larger cultural context contributes critically to the individual's experience of loss. Oversimplification and reductionistic approaches to the death experience result in insensitive, stereotypic, formulaic, and consequently unsuccessful intervention strategies.The problem, as Clegg and Landsdall-Welfare see it, is that these discoveries and insights have not been effectively integrated into the discourse about and interventions for loss experiences for individuals with intellectual disability. This failure has occurred because of the strong continued [End Page 87] effect of the normalization orientation in the field of intellectual disability and vulnerability of the meaning of life for individuals with intellectual disability.They caution against hasty attempts to integrate the insights on loss from various sources into the discourse on bereavement in the field of intellectual disability. They cite the fragility of meaning of life for individuals with intellectual disability. This fragility leaves them vulnerable to being overwhelmed by the larger discourse with a resulting loss of identity. Their brief mention at the conclusion of their essay of other contested concepts in other clinical services gives rise to thinking further.Clearly, the fundamental challenge for any discussion of the meaning of a loss experience is the complex nature of our understanding of death. First, there are problems with basic definitions of death from the perspective of science. But from an intervention and treatment perspective, the greatest problem has to do with our larger cultural discomfort in even discussing death and loss. The issue of intervention concerning loss for a specific population, such as those with intellectual disability, is in part only a reflection on our confusion concerning intervention in loss for any person, regardless of their disability status. Here again is confirmation of fundamental likeness across individual differences. This is not to be confused with normalization; rather, it... (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)

In lieu of an abstract, here is a brief excerpt of the content:Disability Embodied: Narrative Exploration of the Lives of Two Brothers Living with Traumatic Brain InjuryDouglas E. KiddAny discussion of personal experiences with disability, inevitably lead me to recall the experiences of my brother, Richard Kidd. An examination of our journeys clearly illustrates the term disability. More so, our stories reveal the outcome of severe physical impairment dictates the limits of personal agency and autonomy. Perhaps an obvious conclusion, but (...) exploration of our experience is useful as we provide living testimony to eventualities that could similarly occur to others. In order to provide context for discussion of our disabilities, I will briefly recall how we acquired our traumatic brain injuries (TBI), as well as how our brain injuries are expressed. The article will demonstrate that due to the severity of the brain damage he acquired, Richard is entirely subject to the whim of the society he encounters, and thus disabled. The article will also discuss how the disabling attitudes I have encountered sought to diminish my humanity.Richard KiddRichard’s descent into impairment began in the early evening hours of December 31, 1987. As a pedestrian, Richard attempted to cross a street in Indianapolis, when a car without using headlights, slammed into him. In addition, the driver fled the scene of the accident. After stabilizing from the initial trauma—multiple compound fractures to both legs and severe brain injury—Richard spent approximately ten months in coma. After emerging from coma, Richard underwent months of therapy. Albeit with consistent direction from others, therapy enhanced Richard’s ability to hold a cup and use a spoon. These were significant victories for Richard and signaled the beginning of his recovery. However, within two years of his accident, monies ended for rehabilitation and Richard entered into custodial care at his first nursing facility. As time passed, his daily interactions with poorly supervised, unskilled, and underpaid nursing facility employees with little time to work with Richard meant it was more cost efficient for staff to simply spoon–feed Richard. Consequently, Richard lost the ability to participate in an aspect of his self–care. Richard’s humanity took years to gradually erode, but due to the severity of his impairments, he became viewed by those he encountered as an object of treatment, or reservoir of pain and pity, rather than an individual worthy of respect. Accordingly, [End Page 199] Richard became viewed as other. Thus began Richard’s descent into disability.A complete lack of dental care for decades provides a good example of Richard’s treatment as other. Richard’s experience also demonstrates that desensitized members of the medical, dental, and long–term care professions sometimes precipitate grave circumstances. The combination of an inattention to his needs and his limited ability to participate with his self–care meant that Richard typically went without dental treatment. His quality of life diminished further when aides at a nursing facility dropped him. During the fall, Richard’s face smashed into the floor and several teeth were shattered. More than a decade passed before Richard finally received follow–up dental treatment—that day nearly cost him his life. Due to prolonged neglect, all of Richard’s teeth required extraction. I do not question the dental surgeon’s assessment of Richard’s teeth. I am certain that all of his teeth needed to be removed; but Richard’s sedentary lifestyle meant that he had limited ability to cope with the trauma associated with having 24 teeth removed in one session. I feel certain the dental surgeon assumed Richard was like most other patients and could handle the stress associated with the procedures. However, Richard could not cope with trauma and blood loss the extractions produced. What is worse than the dental surgeon’s assessment of Richard’s ability to withstand surgery is the post–op personnel decision to discharge him to home, shortly after surgery. The nursing facility was ill–equipped to cope with the extent of the blood loss that ensued and soon Richard began to aspirate on his own blood. Accordingly, Richard was sent to the hospital where he proceeded to slip into coma. Richard remained in a coma for approximately four days and in hospital... (shrink)

Medical technologies and assistive devices such as ventilators and power wheelchairs are designed to sustain life and/or improve functionality but they can also contribute to stigmatization and social exclusion. In this paper, drawing from a study of ten men with Duchenne muscular dystrophy, we explore the complex social processes that mediate the lives of persons who are dependent on multiple medical and assistive technologies. In doing so we consider the embodied and emplaced nature of disability and how life is (...) lived through bodies coupled with technologies and experienced as 'techno-body-subjects in situ'. Normative implications for theory and research, including bioethics research, are discussed. (shrink)

Medical technologies and assistive devices such as ventilators and power wheelchairs are designed to sustain life and/or improve functionality but they can also contribute to stigmatization and social exclusion. In this paper, drawing from a study of ten men with Duchenne muscular dystrophy, we explore the complex social processes that mediate the lives of persons who are dependent on multiple medical and assistive technologies. In doing so we consider the embodied and emplaced nature of disability and how life is (...) lived through bodies coupled with technologies and experienced as ‘techno-body-subjects in situ’. Normative implications for theory and research, including bioethics research, are discussed. (shrink)

This article engages with debates concerning the moral worth of human beings with profound intellectual and multiple disabilities (PIMDs). Some argue that those with such disabilities are morally less valuable than so-called normal human beings, whereas others argue that all human beings have equal moral value and so each group of humans ought to be treated with equal concern. We will argue in favor of a reconciliatory view that takes points from opposing camps in the debates about (...) the moral worth of humans with PIMDs. The view in question, roughly, is this: most humans with PIMDs are persons in the morally significant sense and so deserve equal moral consideration to so-called normal human beings. Some humans with PIMD may not, however, be persons, but nevertheless deserve equal moral consideration to persons because they stand in a special relation to persons. (shrink)

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)

Writing is central both to the medical diagnostic codification of disability and to disabled people’s efforts to interrupt, complicate, or disrupt dominant medical narratives. This Symposium, like the George Washington University conference from which it takes its name, creates space for diverse modes and genres of claiming authority regarding diagnosis and its cultural and material effects. “Queer” and “crip” interrogations of diagnosis illuminate its status as a cultural phenomenon, embracing culturally disavowed embodiments and embodied experiences as tools for diagnosing inegalitarian (...) social relations and opportunities for cultural interventions. This Symposium traces the workings of diagnostic normativity manifested in experiences such as “disruptive deafness,” unstable bodily materialities, pathologized grief and other forms of affective distress, and “surgical assemblages.” It presents a diverse array of compositions, articulated on each writer’s own terms, addressing a range of embodied experiences through multiple genres and voices, ranging from conversation transcript to scholarly essay, poetry, graphic memoir, and personal essay. Here, laypersons interrupt monologic medical diagnosis, claiming space to compose themselves. Together, the authors trace instances of corporeal “correction” back to the noxious agents, both environmental and political, that consistently breach the boundaries of corporeality. (shrink)

This chapter articulates how people understand “microaggression” and offers a clarifying augmentation of that account. It attempts to define disability, and then talk through how analysis connects with the very few discussions of microaggressions within the context of disability. The chapter introduces the case of “Disabled But Not Really.” It leverages previous analysis to show how microaggressions’ mixed legibility is crucial to their role in maintaining an epistemology that polices disability in general and disabled people in particular. The chapter discusses (...) the ramifications this has for future analysis of both microaggressions and disability. It highlights the specific challenges faced by persons at the junction of multiple oppressed identities. Ontologically, the commitment is the rejection of the medical model of disability where “disabilities are just particular kinds of bodily malfunction”. The focus within that ontological analysis is primarily concerned with the social/political consequences of disability. (shrink)

By ruling out questions of impairment from the social critique of disability, Disability Studies analyses establish a limit point in the field. Of course the setting of “limits” enables possibilities in multiple directions as well as fortifies boundaries of refusal. For instance, impairment becomes in DS simultaneously a productive refusal to interpret disabled bodies as inferior to non-disabled bodies and a bar to thinking through more active engagements with disability as materiality. Disability materiality such as conditions produced by ecological (...) toxicities serve as active switch-points for creative corporeal navigations of the interaction between bodies and environments.In fact in this paper we want to propose a more “lively” definition of disability materiality to existing definitions of impairment as limiting expressions of non-normative bodies. We have no useful ways of explaining disability as adaptation and it’s time we begin the process of theorizing more active ideas of materiality that extend existing ideas of disability beyond simplistic conceptions of socially rejected biologies made available by social constructivist thought. (shrink)

Disability theology has been a small but growing field over the past thirty years. This paper reviews the current methods used in the discipline and proposes ways to move the field forward. Two intersections between disability studies and Christian theological ethics are explored in particular: bioethics and critical theory. Bioethics helps to address the material health and wellbeing concerns of people with disabilities and the discriminatory attitudes about disability that stem from the medical field. Critical theory on the other (...) hand, examines disability through cultural productions that shape our ableist imaginary. Critical theory offers resources for countering or “disciplining” our imaginations. Both bioethics and critical theory offer unique entry points into disability, but each also contains limitations that reveal why disability theology must continue to engage multiple methods and discourses. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Third Way: Social Disability and Person-Centered AssessmentChristopher Heginbotham (bio)Keywordsimpaired functioning, psychopathic, personality disorder, neurological damage, psychotherapyJohn Sadler’s Fascinating Paper identifies a significant problem with existing diagnostic classifications. But in doing so he raises further unresolved philosophical, nosological, and practical problems. Although he is undoubtedly right in showing that the Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV (and International Classification of Diseases [ICD]-10) do not provide an adequate (...) categorization, he is I believe wrong to use the term “vice” to describe the cluster of wrongful acts.“Vice” conjures up images of Miami, drugbusting police, prostitution, and other activities that are characterized by one thing—by and large, these are actions undertaken knowingly, usually for financial gain. These are not the actions of people with impaired mental functioning as a result of mental disorder or neurological damage. It is of course true that human trafficking and enforced prostitution may mean women forced into prostitution against their will, but rarely are these women considered mentally disordered solely as a result of their prostitution. Yet it is capacitated, premeditated wrongdoing that is normally considered to be “vice.”By contrast, all the cases cited in the paper describe conditions that are almost certainly the result of some form of impaired functioning, either owing to early childhood experiences (Case A), familial culture and conditioning (Case B), or neurological damage (Case C). The common thread in these cases is impaired capacity—in Case A this could be described as due to psychopathic or personality disorder (I distinguish the two separately rather than describe the phenomenon as “psychopathic personality disorder”) as a result of multiple childhood traumas. Their presentation is not unexpected given the person’s history and, although the condition may have become refractory, it might be amenable to treatment with psychoanalytically oriented psychotherapy, given sufficient time and a nurturing environment (Bateman and Fonagy 2006, 2008; Cordess and Cox 1996; Levy 2008).The description of Case B leaves a lot of room for doubt and uncertainties. Did Ms A really try to smother her child? She confessed to one occasion, but was this under duress? Did she feel that if she agreed she would be treated more leniently? And if she was guilty, does it suggest “vice,” a premeditated act, or is there another explanation—attention [End Page 31] seeking because of low self-esteem or a personality disorder as a result of some abuse that had not been identified? Almost certainly from the description given this would not count, for me at any rate, as vice. Her actions may be odd, bizarre, or dangerous, but did they demonstrate a mens rea? Was Ms A making adequate evaluative judgments of her situation and that of her child? We know from clinical work with very damaged women in forensic mental health services that early physical, emotional, or sexual abuse leads in turn to women harming both themselves and their children (Bland et al. 1999; Cordess and Cox 1996; see also for example, Jeffcote and Watson 2004). Or perhaps, speculatively, her condition was Munchausen’s by proxy?Case C is horrendous but does not lend itself readily to the forms of psychiatric classification available. Indeed there is no easy way to describe such actions other than those of someone who is either incapable of understanding the nature and consequence of the actions that he has undertaken, or is simply “mad” in a folk sense. Prima facie this seems to be the result of permanent and little understood neurological damage. However, this case comes closest to the evil that is implied in the term “vice”; and might be diagnosed similarly to a celebrated English murderer, that of Peter Sutcliffe, the so-called Yorkshire Ripper. Sutcliffe was diagnosed as suffering from paranoid schizophrenia, although the jury at his trial found that he was fit to plead, and he was initially sent to prison, where he deteriorated. He is now, and has for some time, been in Broadmoor high secure hospital.The result of these comments is that I agree fully with John Sadler’s conclusions, but for rather different reasons. DSM-IV categories try and fail to offer a symptomatology for... (shrink)

The goal of inclusion is more or less credible depending in part on what it is that learners have in common. I discuss one characteristic that all learners are thought to share, although the learners I am concerned with represent an awkward case for the aspiration of inclusivity. Respect is thought of as something owed to all persons, and I defend the view that this includes persons with profound and multiple learning difficulties and disabilities. I also consider the (...) implications of respecting profoundly disabled learners for teaching and learning, and three aspects in particular: treating the profoundly disabled learner as a person; the close relationship between teaching and caring for a vulnerable learner; and individualised learning as an element of a successful teaching and learning environment. (shrink)

Neither secular moral theory nor religious ethics have had much place for persons in need of constant physical help and cognitive support, nor for those who provide care for them. Writing as the father of a fourteen-year-old daughter with multiple disabilities, I will explore some of moral issues that arise here, both from the point of view of the disabled child and from that of the child's caretaker(s).

The goal of inclusion is more or less credible depending in part on what it is that learners have in common. I discuss one characteristic that all learners are thought to share, although the learners I am concerned with represent an awkward case for the aspiration of inclusivity. Respect is thought of as something owed to all persons, and I defend the view that this includes persons with profound and multiple learning difficulties and disabilities. I also consider the (...) implications of respecting profoundly disabled learners for teaching and learning, and three aspects in particular: treating the profoundly disabled learner as a person; the close relationship between teaching and caring for a vulnerable learner; and individualised learning as an element of a successful teaching and learning environment. (shrink)

Growing numbers of human beings live with profound and multiple learning difficulties and disabilities. Exploring the moral, social and political implications of this trend, Valuing Profoundly Disabled People addresses questions that are high on policy and practice agendas in numerous regions around the world, including the UK and the EU, the USA, and Australasia. In this important work Vorhaus examines fundamental moral and social questions about profound disability, and each chapter combines a comprehensive review of existing literature with (...) thought-provoking and original philosophical arguments. Vorhaus argues that there is a pressing need to consider the moral and political claims of people whose lives are characterised by extensive impairments, dependency and vulnerability. The book prompts readers to reflect on complex issues relating to the practices of caring, teaching and treating people with profound disabilities in contexts such as education, health care and social policy. Providing a much-needed contribution to the field, this book will be of interest to postgraduates, academics and researchers in a number of distinct and interrelated fields, including disability and impairment, human rights, philosophy, sociology, health and social policy, and education. The book will also be of great interest to practitioners and policymakers seeking to promote the aims of realising human potential and respecting disability. (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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Disability has been a topic in multiple areas of philosophical scholarship for decades. However, it is only in the last ten to fifteen years that philosophy of disability has increasingly become recognized as a distinct field. In this paper, I argue that the foundational question of continental philosophy of disability is the question of the meaning of ability. Engaging a range of canonical texts across the Western intellectual tradition, I argue that the foundational question of continental philosophy of disability (...) is the question of the meaning of ability. I then explore three pathways toward this question: the verdict of bodies, the bind of bodies and worth, and the dogma of individual ability. I contend that unlike the question of the meaning of being, the question of the meaning of ability is not simply a problem of forgetting but instead a problem of cruelty and dehumanization. (shrink)

This article presents the themes addressed during the closing talk of an international study session on the work of trainee instructors in vocational higher education programs. The talk discussed professional development in internships, stances and actions in guiding and evaluating trainees, measures for working with and accommodating trainees with disabilities, and the issues and challenges involved in the work of trainee instructors.

Drawing upon the life and work of S. Kay Toombs, I explore the impact and import of phenomenological accounts of disability for the existentialist tradition. Through the case of multiple sclerosis, a noncongenital, late-onset, and degenerative disability, I show how the general structures that emerge from its lived experience largely support a mere-difference view of disability and highlight the need for an equitably habitable world. I further argue that phenomenological accounts of disability demonstrate accessibility to be the defining feature (...) of what it means to be embodied as we are. I conclude with a discussion of the more general philosophical relationship between disability, embodiment, and existentialism. (shrink)

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical and (...) intellectual impairments, for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided. (shrink)

Ms. X is a person with cerebral palsy and schizophrenia. She has intractable bedsores that are a result of her immobility and to poor wound care related to her delusional thinking. Despite intensive community support, the wounds have worsened to the point that she has needed multiple hospitalizations to prevent systemic sepsis, a life‐threatening condition. She is capable of placement decisions and wishes for independence at home but is incapable of making wound care decisions and does not appreciate that (...) immediately returning home from the hospital, instead of going into a special care facility, would likely result in sepsis. The resulting dilemma about discharge planning highlights the complexity involved in weighing concerns around mental illness and capacity for treatment and placement of care. The extent of the care that is required and available in a community or health care system and the slow but relatively certain progression of the symptoms also make the decision challenging. Two commentaries take very different approaches in exploring the question whether Ms. X should be supported to go home or to a special care facility. (shrink)

Learning social studies content is important for all students, including those with severe disabilities. However, there is a limited amount of research that specifically examines teaching social studies to this population of students. Therefore, educators must look to research-based practices in other academic areas (e.g., English language arts) to determine new strategies to teach this important content. Using a multiple probe across participants design, three fifth-grade students with severe disabilities were taught to answer comprehension questions during read-alouds (...) of social studies text using a modified system of least prompts and graphic organizer. Findings indicate all students improved on the correct number of comprehension questions answered independently. Implications for practice and ideas for future research to teach social studies to students with severe disabilities are discussed. (shrink)

The disability viewpoint is the fundamental for understanding social justice in a given population. Disability rights need to be obeyed in the inclusive preparedness and response to all the disasters or during the crisis period including COVID-19 pandemic. COVID-19 pandemic jeopardized the health and rehabilitation services globally. The impact is much more in low resource developing countries like Bangladesh. In general, people with disability (PWD) suffer from multiple medical and rehabilitation complications and they need frequent rehabilitation consultations or hospital (...) admissions in comparison to people without disability. As a developing country, Bangladesh has poor ratios of doctors, nurses and technologists of 1:0.4:0.24 (WHO: 1:3:5) to face the COVID-19 challenge. Rehabilitation services have been disrupted in almost two-thirds (63%) of countries of the world. Even though rehabilitation is the key to recovery following severe illness from COVID-19. There are many concerns and debates about the preparedness, response and mitigation the process of COVID-19 on the part of the national government. According to recent study reports, the lives of about 100% of PWD have been impacted by the COVID-19 pandemic. COVID-19 National Technical Advisory Committee is working for strategic planning, response and mitigation process but omission of a representative of PWD or a rehabilitation physician in the committee has created much dissatisfaction. The difficult COVID-19 testing process due to country wide shutdown of rehabilitation essential services and central pulling of rehabilitation physicians have side lined the PWD inclusiveness. It is expected that the rehabilitation preparedness, response and mitigation of the pandemic should be based on an ethics driven process. (shrink)

This article asks how people come to interpret themselves and others as autonomous given their multiple dependencies. We draw on a cross-case comparison of ethnographic studies with two populations for whom autonomy is both central and problematic: elderly patients in post-acute care, and young adults with disabilities in an independent living program. Analyzing the institutional efforts to make their clients “as independent as possible,” we find that staff members at each organization formulate autonomy as a temporal project through (...) an ongoing calibration of open futures, ideal pasts, and situational competence. Constantly adjusting and fine-tuning where in time autonomy “really” is, workers arrange present dependence so that the contours of the future remain open for their clients. In other words, they make use of temporal markers to produce recognizable autonomous subjects whose dependencies are momentary. Theorizing this temporal project enables us to see more clearly how all of us engage in the constant business of “doing” autonomy, and to better understand the role of institutions in producing autonomous selves. (shrink)

Intersectional feminist scholars emphasize how overlapping systems of oppression structure gender inequality, but in focusing on the gendered, classed, and racialized bases of stratification, many often overlook disability as an important social category in determining economic outcomes. This is a significant omission given that disability severely limits opportunities and contributes to cumulative disadvantage. We draw from feminist disability and intersectional theories to account for how disability intersects with gender, race, and education to produce economic insecurity. The findings from our analyses (...) of 2015 American Community Survey data provide strong empirical support for hierarchies of disadvantage, where women and racial minority groups with disabilities and less education experience the highest poverty levels, report the lowest total income, and have a greater reliance on sources outside the labor market for economic security. By taking disability into account, our study demonstrates how these multiple characteristics lead to overlapping oppressions that become embedded and reproduced within the larger social structure. (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 (...) class='Hi'>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)