This article analyzes narrative illustrations in genetic counseling textbooks as a way of understanding professional habitus--the dispositions that motivate professional behavior. In particular, this analysis shows that there are significant differences in how the textbooks' expository and narrative portions represent Down syndrome, genetic counseling practice, and patient behaviors. While the narrative portions of the text position the genetic counseling profession as working in service to the values of genetic medicine, the expository portions represent genetic counselors as neutral parties. Ultimately, this (...) article argues that this ambiguity is harmful to the production of a professional habitus that is consistent with espoused professional values concerning respect for persons with disabilities and the promotion of psychosocial counseling. (shrink)

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a (...) way that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (shrink)

In developed economies, powerful legislative and regulatory frameworks, for people with disability over the last five decades, have provided major motivation for business compliance with disability in the workplaces. However, developing economy like India is marked by emergent disability legislation, weak institutional enforcement and an evolving disability rights movement. In the absence of strong institutional expectations, the private sector’s role in mainstreaming the disability agenda has been largely an act of voluntary participation. Drawing upon an (...) in-depth, multilevel, cross-functional qualitative study of four Indian information technology sector companies, this paper explores why these companies engage in pro-social corporate behaviour in favour of disability. The study locates itself in the context of conceptualization of PWD as employee stakeholders and the literature on strategic CSR. The findings reveal that strategic factors promote voluntary business engagement with disability at workplaces and contribute to understanding of workplace integration of minority employees. (shrink)

Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. Inthis (...) case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories. (shrink)

Canadian children’s literature rarely depicts characters labelled with intellectual disabilities, yet when it does it often remains mired in stereotypes that recycle prevalent myths and misconceptions. Even as more recent literature attempts to push back against such stereotypes, it nevertheless predominantly remains caught in these dangerous representational repertoires. This article offers a brief history of Canadian literary depictions of intellectual disability and a critique of the Canadian publishing spheres. Through a critical analysis of Lorna Schultz Nicholson’s book Fragile Bones, (...) we discuss the limits of representation of intellectual disability in children’s fiction. We also offer a critique of the ableist publishing climate in Canada and suggest that structural barriers prevent disabled writers from entering the literary marketplace on an equal playing field. These barriers to publishing lead to the vast underrepresentation of disabled authors and the misrepresentation of disability in general and intellectual disability in particular in Canadian children’s literature. (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)

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

Disability dance lays claim to the provocative possibilities of the disabled body, raising profound questions about the politics of art, affect, and embodiment. For scholars of religion, disability dance is a powerful—and as yet unrecognized—site for probing the sacrality and ethics enacted in disability culture. This article brings the biblical tale of Jacob and the angel into conversation with a contemporary performance, “The Way You Look (at me) Tonight,” an intimate duet between choreographer and performer Jess Curtis (...) and Clare Cunningham, an internationally acclaimed dancer who explores the artistry of lived disability experience. Using dance as a hermeneutic invitation to draw out ethical insights into risk, consent, and intimacy, I offer a disability-sensitive reading of Genesis 32—reading the angel as a body whose presence attests to the brilliant shock of disability difference and probing the psychic and somatic transformation that unfolds when Jacob comes into kinesthetic contact with disability and the sacred. (shrink)

What is it like to live with the label “Disability?” NIB editorial staff and narrative symposium editors, Jeffery Bishop and Naomi Sunderland developed a call for stories, which was sent to several list serves, shared with the 1000 Voices Project community and posted on Narrative Inquiry in Bioethics ’ website. The request for personal stories from people who identify with the label “disabled” asked them to: consider how the label “disability” interacts with other aspects of their life in (...) health care settings; does the term “disability” reflect their actual embodied experiences of impairment or does it fail to do justice to their particular experience of impairment; describe the kind of experiences that are possible because of the impairment(s); discuss how the label has affected their “authentic voice”; and many other concepts about what effects the label has on their lives. These authors share deeply personal experiences that will help readers understand their world, challenges, and joys. Thirteen stories are found in the print version of the journal and an additional five supplemental stories are published online only through Project MUSE. The stories are complemented by four commentary articles by Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. These scholars come from the disciplines of law, social work, media studies, medicine, and bioethics from Australia and the United States. Together, the symposium’s storytellers and commentators offer striking and informative insights into the everydayness of living with disabilities. (shrink)

The central issues raised in much of feminist literary theory's early scholarship remain prescient: how does narrative engage with the social‐historical? In what ways does it codify existing structures? How does it resist them? Whose stories are not being told, or read? In this article I use Doris Lessing's novel The Fifth Child (1988) as a text with which to begin to address the above questions by reading with attention to the mother story but also the ‘other’ stories operating both (...) within and outside of the novel; in particular I am concerned with the convergence of maternity, disability and narrative. The novel's co-implication of sexual difference and corporeal difference reveals the ways in which the mother's story is both made possible and authorized by the disabled body of her child, and by his inability to tell his own story. Yet, if The Fifth Child is a horror story that uses the disabled child's body as its ground, it is also about the horror of maternity, in its conception and attendant choices. In this fictional story as well as in the social‐historical narrative circulating at the time of its publication in the late 1980s, both child and mother are indicted in their otherness and it is ultimately impossible to separate one from the other. (shrink)

Intellectual Disability: Ethics, Dehumanization, and a New Moral Community presents an interdisciplinary exploration of the roots and evolution of the dehumanization of people with intellectual disabilities. Examines the roots of disability ethics from a psychological, philosophical, and educational perspective Presents a coherent, sustained moral perspective in examining the historical dehumanization of people with diminished cognitive abilities Includes a series of narratives and case descriptions to illustrate arguments Reveals the importance of an interdisciplinary understanding of the social construction (...) of intellectual disability. (shrink)

These accounts are astonishing in their shared concerns and beautiful in their variety of styles and language. This paper employs a hermeneutic spiral to ask a series of related questions in seeking a deeper understanding of the writers’ accounts of what Inga Clendinnen has called “falling down the rabbit–hole”—experiences of existential discontinuity born of illness and disability.... The narratives of the thirteen authors are shown to address ways of exploring intersubjectivity and situation; affliction and respect; and refusal, resistance (...) and solidarity. In conclusion, the paper identifies five lessons that can inform the thought and actions of all those who seek an ethical response to people living with chronic illness and impairment. (shrink)

This paper charts the concepts of grip and the bodily auxiliary in Maurice Merleau-Ponty to consider how they find expression in disability narratives. Arguing against the notion of “maximal grip” that some commentators have used to explicate intentionality in Merleau-Ponty, I argue that grip in his texts functions instead as a compensatory effort to stave off uncertainty, lack of mastery, and ambiguity. Nearly without exception in Phenomenology of Perception, the mobilization of “grip” is a signal of impending loss, (...) and is offered as a strategy for managing failure rather than as an example of sure-footed mastery. I read Merleau-Ponty alongside Mary Felstiner's Out of Joint: A Public and Private Story of Arthritis to explore these other, attenuated dimensions of grip. Finally, the paper turns to Harriet McBryde Johnson's memoir Too Late to Die Young as an example of a way of thinking disabled embodiment otherwise. (shrink)

Independence was a core value of the movement for disability rights. People with disabilities did not have to be dependent, advocates claimed; they were robbed of autonomy by poverty, social prejudice, and architectural barriers. Recently, critics have noted that the emphasis on independence equates personhood with autonomy, reason, and self-awareness, thereby excluding those who are incapable of self-determination. The stigma of dependency is communicated to caregivers whose work is devalued and undercompensated. These values are echoed in the life writing (...) of people with disabilities, which tends to present a singular narrative voice, even when the author requires assistance in the physical or intellectual work of composition. The 1979 Mexican memoir-testimonio Gaby Brimmer, collaboratively authored by the acclaimed journalist Elena Poniatowska, Brimmer, her mother, and her paid caregiver is a notable exception. Consisting of interwoven dialogue among its three informants, Gaby Brimmer enacts dependency at the level of form, while exploring the challenges and opportunities of interdependence in societies that devalue the giving and receiving of care. (shrink)

The aim of this study was to investigate the experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation. Qualitative interviews were performed with 26 persons and thereafter subjected to qualitative latent content analysis. The experiences of personal assistance were very much in accordance with the said principles, the most important factor (...) being that one is met with understanding. The participants described situations in which their integrity was violated in that they were not treated as competent adults. This indicates the importance of future efforts in nursing to support personal assistants with ethical knowledge and supervision so that they can empower people with disabilities and thereby enable them to maintain their self-esteem and dignity. (shrink)

A number of commentators claim their disability to be a part of their identity. This claim can be labelled ‘the identity claim’. It is the claim that disabling characteristics of persons can be identity-constituting. According to a central constraint on traditional discussions of personal identity over time, only essential properties can count as identity-constituting properties. By this constraint, contingent properties of persons (those they might not have instanced) cannot be identity-constituting. Viewed through the lens of traditional approaches to the (...) problem of personal identity over time, disablement is most likely to be regarded as a contingent property of a person and not an essential one. Hence, on traditional approaches, the identity claim must be false. An alternative account of identity is sketched here. It is one which exploits the idea of narrative identity, and points to five basic features of personal existence. When accounts of identity are structured in relation to these five features, it is argued, disablement can be shown to be identity-constituting, and hence the identity claim can be accepted. (shrink)

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

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)

Suddenly unable to walk, I found resources for facing disability in the works of Aristotle and Nietzsche, even though their respective ethical schemes are incommensurable. Implementing Amélie Rorty's notion of crop rotation, I show how each scheme offers the patient something quite indispensable, having to do with how each has its own judgmentally-motivated psychological underpinnings. Aristotle's notion of empathy, wherein the moral move occurs whenever we take up someone else's good as our own, is empowering, especially to those who (...) face an imperiled embodiment. However, Nietzsche teaches us that pity is demeaning both to the pitier and to the pitied, because it falsely assumes that life should be easy so that we are filled with ressentiment when it isn't. Those facing disability need empathy, not pity. The richness of this distinction is vividly conveyed in narratives that show how empathy and pity play out in lived situations, thereby avoiding the dissociation that too often characterizes ethical theorizing. By honoring narrative accounts of how these relational moves are either snagged or successfully made, the attuned moral agency of medical practitioners can be fostered. (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)

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)

Narratives structure and inform how we understand our experiences and identity, especially in instances of suffering. Suffering in mental disorder (e.g. bipolar disorder) is often uniquely distressing as it impacts capacities central to our ability to make sense of ourselves and the world—and the role of narratives in explaining and addressing these effects is well-known. For many with a mental disorder, spiritual/religious narratives shape how they understand and experience it. For most, this is because they are spiritual (...) and/or religious. For others, spiritual/religious narratives still often influence secular approaches to mental disorder, more than approaches to other disabilities (e.g. intellectual, physical) or causes of suffering (e.g. physical disease). Such narratives are often harmful, especially insofar as they ‘over-spiritualize’ mental disorder; and undercut ‘spiritual meaning-making’. Here I address the impact of spiritual/religious narratives that helpfully avoid over-spiritualizing mental disorder while enabling spiritual meaning-making about it. First, I address the role of narratives in meaning-making more generally; then, I present results from my recent empirical study testing the impact of such narratives on participants’ meaning-making about their mental disorder. I conclude by addressing implications and potential worries. (shrink)

The character and extent of disabilities, especially cognitive disability, have posed significance problems for existing moral theories. Certain philosophers have even questioned the moral personhood of people with disabilities and have argued that people with profound cognitive impairments should not be granted the same moral status as those who are cognitively able-bodied. This paper proposes an alternative understanding of moral personhood as relational rather than individuated. This relational moral personhood finds its foundation in the clinical practice and psychoanalysis of (...) Julia Kristeva and the hermeneutic narrative identity of Paul Ricoeur. One consequence of this relational personhood is a new understanding of moral status through narrative co-authorship rather than intellectual or social capacity. Another consequence is a refiguration of narrative identity as narrative interdependence. (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 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)

Composers with disabilities and the critical reception of their music -- Musical narratives of disability overcome : Beethoven -- Musical narratives of disability accommodated : Schubert -- Musical narratives of balance lost and regained : Schoenberg and Webern -- Musical narratives of the fractured body : Schoenberg, Stravinsky, Bartók, and Copland -- Disability within music-theoretical traditions -- Performing music and performing disability -- Prodigious hearing, normal hearing, and disablist hearing.

Phenomenology provides a method for disability theorists to describe embodied subjectivity lacking within the social model of disability. Within the literature on body integrity identity disorder, dominant narratives of disability are influential, individual bodies are considered in isolation, and experiences of disabled people are omitted. Research on BIID tends to incorporate an individualist ontology. In this article, I argue that Merleau-Ponty's conceptualization of “being in the world,” which recognizes subjectivity as embodied and intersubjective, provides a better (...) starting point for research describing the experiences of those with BIID and amputees. (shrink)

Cases of severe and enduring Anorexia Nervosa (SEAN) rightly raise a great deal of concern around assessing capacity to refuse treatment (including artificial feeding). Commentators worry that the Court of Protection in England & Wales strays perilously close to a presumption of incapacity in such cases (Cave and Tan 2017, 16), with some especially bold (one might even say reckless) observers suggesting that the ordinary presumption in favor of capacity ought to be reversed in such cases (Ip 2019). -/- Those (...) of us who worry that such trends and proposals amount to (or at least pose a serious threat of) wrongful discrimination on the grounds of disability nevertheless feel the pull of judging many SEAN service users to be incapacitous with respect to decisions regarding (perhaps amongst other things) treatments involving feeding, artificial or otherwise. But it is difficult to get to grips with exactly what their incapacity consists in. Many such service users seem able to understand, retain, use and weigh information, and express a decision (i.e. they seem, prima facie, to satisfy the ‘MacArthur’ criteria). At the very least, they do not, generally. (shrink)

Both in the Netherlands and in Britain, practices of ‘life story work’ have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the ‘disabled authorship’ of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational (...) contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of ‘life story work’ as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self‐understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic‐interpretative methodologies in narrative ethics aim at a ‘sudden moment of intimacy’ in relationships of nurses and clients. The ‘epiphany’ of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology. (shrink)

In this paper, we explore how caretakers experience living with disabled companion animals. Drawing on interviews, as well as narratives on websites and other support groups, we examine ways in which caretakers describe the lives of animals they live with, and their various disabilties. The animals were mostly dogs, plus a few cats, with a range of physical disabilities; almost all had been rehomed, often from places specializing in homing disabled animals. Three themes emerged from analysis of these texts: (...) first, respondents drew heavily on the common narrative of disabled individuals as heroes, often noted in disability rights literature – while simultaneously drawing on, and challenging, ideas of disability as incapacity. The second theme was love and empathy. Several of our interviewees spoke of empathy being enhanced thro We discuss these caretakers' stories of animal disability in relation to both studies of human-animal relationships, and to disability rights, as well as to ideas about what constitutes care. What these narratives emphasize is a particular sense of sharing and reciprocity, felt through the body, especially when caretakers spoke of their own ill-health. They saw disability – the animals' or their own – not as limiting, but as enabling both to flourish within caring relationships. (shrink)

Narratives structure and inform how we understand our experiences and identity, especially in instances of suffering. Suffering in mental disorder (e.g. bipolar disorder) is often uniquely distressing as it impacts capacities central to our ability to make sense of ourselves and the world—and the role of narratives in explaining and addressing these effects is well-known. For many with a mental disorder, spiritual/religious narratives shape how they understand and experience it. For most, this is because they are spiritual (...) and/or religious. For others, spiritual/religious narratives still often influence secular approaches to mental disorder, more than approaches to other disabilities (e.g. intellectual, physical) or causes of suffering (e.g. physical disease). Such narratives are often harmful, especially insofar as they ‘over-spiritualize’ mental disorder; and undercut ‘spiritual meaning-making’. Here I address the impact of spiritual/religious narratives that helpfully avoid over-spiritualizing mental disorder while enabling spiritual meaning-making about it. First, I address the role of narratives in meaning-making more generally; then, I present results from my recent empirical study testing the impact of such narratives on participants’ meaning-making about their mental disorder. I conclude by addressing implications and potential worries. (shrink)

This conversational opinion article between two parties – Kate, a disability performance scholar and Sarah, an interdisciplinary artist-scholar with lived experience of disability – considers the dancing body as redeemer in the specific case of a dancer experiencing ‘chemo fog’, or Chemotherapy-Related Cognitive Impairment (CRCI) after undergoing oncological treatments for Hodgkin Lymphoma. This work draws on Pini’s own lived experience of illness (Pini & Pini, 2019) in dialogue with Maguire-Rosier’s study of dancers with hidden impairments (Gibson & Maguire-Rosier, (...) 2020). In an exploratory account based on an interview with one another, the authors ask: when our senses and perceptions of ourselves and the world we become are obfuscated, what is the nature of the new relationship between the performing self and its absent body/mind/world? How can we shape our narrative and articulate who we are, what we are doing or where we are going, if we are moving in the ‘fog’? Our discussion reveals how Pini’s dancing body elucidates healing, while recovering an agentic perspective in her experience of alienation and frustration tied to chemo fog and related impairments. With this work we offer an original perspective on how a dancing body can resist theoretical diagnosis. (shrink)

This article draws on recent research in the medical humanities to analyze two contemporary Chinese films: Zhang Yuan's Sons (1996) and Zhou Xiaowen's The Common People (1998). By portraying psychic and physical anguish in ways that refuse to divorce biology from culture, such films offer rare moral dialogues on biomedical issues and contribute a cross-cultural perspective invaluable to the task of responding to illness and suffering.

The untimely passing of Reverend Canon Dr Christopher Newell, AM, came as a shock to many in the bioethics world. As well as an obituary, this article notes a number of important themes in his work, and provides a select bibliography. Christopher's major contribution to this field is that he was one of a handful of scholars who made disability not only an acceptable area of bioethics—indeed a vital, central, fertile area of enquiry. Crucially Christopher emphasised that where we (...) do ethics is actually in everyday life—while we mourn his passing, his rich work and example will continue to inspire bioethical inquiry. (shrink)

In this paper, I examine how an organization narratively constructs its prototypical disabled employee. Data comprise public narratives of the Government of India, the country’s largest employer of disabled persons. Narratives during 2008–2016 were considered as this timespan witnessed the design of inclusive legislation that emphasized defining disabled persons and their entitlements. Findings indicate that the label of “disadvantage” was consistently used to portray the target employee. Alongside other narrative material suggesting, for example that the target employee was (...) someone who required employment assistance, this label was supplied to external audiences to convert them into potential partners. This supply of narrative material further reinforced the portrayal of the target employee. Consistent use of this expansive label subsumed changing definitions of who is a disabled person, allowed for aggregations with diverse disadvantaged collectives, and accommodated changes in employment entitlements and ecosystem partners, thereby allowing the reading of change in stable narratives. The contributions of this paper lie in highlighting how the consistent use of an expansive label can cast narrative stability and change as complementary, and in suggesting that narrating a prototypical employee entails shaping the setting outside the employing organization toward employee categorization. (shrink)

Several studies have shown that nondisabled people—especially healthcare professionals—tend to judge the quality of life of disabled people to be much lower than disabled people themselves report. In part, this is due to dominant narratives about disability. Teachers of biomedical ethics courses have the opportunity to help students to think critically about disability. This may involve interrogating our own assumptions, given the pervasiveness of ableism. This article is intended to facilitate reflection on narratives about disability. (...) After discussing two readings that illustrate the medical and social models of disability, I share my own approach to teaching on disability in my biomedical ethics course. I include student responses to the readings and ways that they report their thinking about disability changed through engagement with the medical and social models. (shrink)

The hashtag #RepresentationMatters is widely used among disability activists on social media because disabled people are often simply ignored in popular culture. Several disabled characters inhabit the Avatar: The Last Airbender universe, but Toph Beifong is the most prominent. Toph is a major character who plays an essential role in the victory over the Fire Nation's imperialism. A rarity in media, Toph's character has as much depth as any member of Team Avatar. The “Irrationally and Infectiously Happy Disabled Person” (...) is a master narrative that contrasts with Disabled Person Better Off Dead, but which is also damaging to disabled people. Barnes argues that hermeneutical injustice appears when disabled people try but fail to make sense of their experience of flourishing with a disability because it is so commonly assumed that disability consigns a person to a horrific, tragic fate. (shrink)

Galasso (2024) shares findings from narrative analyses of relevant constituting material of and interviews with leaders in two national precision medicine research (PMR) programs: 100KGP of Genomic...

Describing someone as disabled means evaluating their relationship with their environment, body, and self. Such descriptions pivot on the person’s perceived limitations due to their atypical embodiment. However, impairments are not inherently pathological, nor are disabilities necessarily deviations from biological normality, a discrepancy often articulated in science fiction via the presentation of radically altered environments. In such settings, non-impaired individuals can be shown to be unsuited to the world they find themselves in. One prime example of this comes courtesy of (...) H. G. Wells’s “The Country of the Blind.” This paper demonstrates science fiction’s capacity to decouple disability’s normative quality from classical medical models stemming from the medical Enlightenment movement by challenging the idea of the biologically normal. It first provides a brief account of disability before exploring the concept of medical normality. It then problematizes the biologically consistent being, arguing that health is only understandable when environmentally situated. Next, the paper provides an overview of “The Country of the Blind” before analyzing how it challenges the idea of biological normality, framing it as a social product rather than a universal constant. Finally, the paper concludes that science fiction narratives effectively interrogate our world’s seemingly consistent trends by envisioning (un)desirable alternatives. (shrink)

Data about the accessibility of United States municipalities is infrastructure in the smart city. What is counted and how, reflects the sociotechnical imaginary of a time or place. In this paper we focus on features identified by people with disabilities as promoting or hindering safe pedestrian travel. We use a regionally stratified sample of 178 cities across the United States. The municipalities were scored on two factors: their open data practices, and the degree to which they cataloged the environmental features (...) that persons with disabilities deemed critical for safe movement through urban spaces. In contradiction to the dominating narrative of too much data and not enough analyses, we find that when it comes to data points that might be useful to persons with disabilities, data are lacking. This data gap has consequences both politically and materially—on one hand data could help enforce compliance with the Americans with Disabilities Act, on the other they would allow for safe route planning. We find that reading these data formats and collection patterns from the perspective of critical disability studies—particularly those whose work disrupts notions of “normal” —helps answer questions about potential benefits and harms of data practices. This lens has the potential to promote analysis that is as disruptive to injustices as it is practical. (shrink)

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim (...) that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

Disabled women's issues, experiences, and embodiments have been misunderstood, if not largely ignored, by feminist as well as mainstream disability theorists. The reason for this, I argue, is embedded in the use of materialist and constructivist approaches to bodies that do not recognize the interaction between “sex” and “gender” and “impairment” and “disability” as material-semiotic. Until an interactionist paradigm is taken up, we will not be able to uncover fully the intersection between sexist and ableist biases that form (...) disabled women's oppressions. Relying on the understanding that sexuality is one such material-semiotic phenomenon, I examine the operation of interwoven biases in two disabled women's narratives. (shrink)

even a brief review of disability narratives shows that many people with disabilities, encompassing a diverse range of impairments, encounter disruptions in their everyday interactions. Individuals with disabilities report that strangers and neighbors alike fail to communicate with them.1 Instead, people defer to friends, partners, and caretakers to offer some command over the interaction. These experiences might be understood as mere annoyances, part of the experience of impairment insofar as it undermines non-disabled individuals’ modes of interaction, leaving them (...) fumbling, seeking assurance that they are handling the situation correctly. But, read less cautiously, these frustrations are emblematic of a... (shrink)