Focusing primarily on the work of Samuel Beckett, Toni Morrison, Wole Soyinka, and J. M. Coetzee, Ato Quayson launches a thoroughly cross-cultural, interdisciplinary study of the representation of physical disability. Quayson suggests that the subliminal unease and moral panic invoked by the disabled is refracted within the structures of literature and literary discourse itself, a crisis he terms "aesthetic nervousness." The disabled reminds the able-bodied that the body is provisional and temporary and that normality is wrapped up in (...) certain social frameworks. Quayson expands his argument by turning to Greek and Yoruba writings, African American and postcolonial literature, depictions of deformed characters in early modern England and the plays of Shakespeare, and children's films, among other texts. He considers how disability affects interpersonal relationships and forces the character and the reader to take an ethical standpoint, much like representations of violence, pain, and the sacred. The disabled are also used to represent social suffering, inadvertently obscuring their true hardships. (shrink)

Since the mid-20th century, there has been a noticeable shift of interest in topics related to disability, illness, old age and the discourse of exclusion, both in practice and theory. Numerous artists, who often employed diverse strategies and aesthetics in their works, would confront similar themes, engaging in activities aimed at counteracting various forms and manifestations of social ostracism. This article describes and analyzes selected projects by Polish representatives of critical art and independent theatre which address these issues. The (...) primary aim of this text is not to catalogue as many artistic undertakings as possible but to highlight a certain trend and demonstrate the significance and purpose of art that boldly explores disability, illness, and deteriorating, ageing and dying bodies. Such themes are often taboo in consumer culture, while the task of art is to expose the mechanisms of exclusion and stigmatization and to draw public attention—often in a highly debatable manner—to topics that are omitted in the official discourse. The artistic projects discussed in the text demonstrate that persons with disabilities can be successful artists, dancers, performers, and actors. (shrink)

The present study's primary aims were a) to explore non-disabled adults' spontaneous representation of disability and the specific associations related to adults and children with disabilities; to investigate participants' general perception of specific inclusive educational practices and the potential impact of contact with disabled individuals on children. We used a mixed approach in a sample of 628 participants aged 18 to 82. Our results suggested that most explicit representations of disability were negatively valenced, i.e., people generally used (...) pessimistic and detrimental related words. Psychomotor deficiencies comprised the most frequent disability category associated with disabled adults, while autism was the most frequent disability related to disabled children. Participants considered that the inclusion of physically disabled children in public schools has a more positive effect on non-disabled children. The previous contact with a friend or a family member with a disability significantly and positively impacted the general attitude toward disability and inclusive educational practices. Results are discussed regarding their practical implications for the educational system and specific strategies related to inclusive public policies. (shrink)

Media reflect and affect social understandings, beliefs, and values on many topics, including the lives of autistic and disabled people. Media analysis has garnered attention in the field of disability studies, which some scholars and activists consider a promising approach to discussing the experiences of – and for promoting social justice for – autistic people, who remain underrepresented on scripted television. Additionally, existing portrayals often rely on stereotyped representations of disabled individuals as objects of pity, objects of inspiration, or (...) villains. Television may also serve as a primary source of public knowledge about disabled people and the concept of disability. It is therefore essential that such portrayals avoid stigma and stereotyping. We take a disability studies lens to critically analyze and compare representations of diverse people, who may sometimes be conflated in the popular imaginary, across television series about autistic characters, those with cerebral palsy, and a character with fetal alcohol spectrum disorder. We employ an intersectional analytic framework to problematize representations of autistic and disabled people, using television, feminist, and critical disability studies literatures. We analyze how the formal structure of television storytelling can either enable or disable its characters, as well as how portrayals of disability that display a sensitivity to concerns raised by critical disability discourse do not necessarily display the same sensitivity when they intersect with marginalized experiences of gender, sexuality, race, and class. (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)

A perspective is developed for approaching affliction as a social fact. Disability and disease are considered as two ways in which we suffer a disjunction which arises from the need to take initiative with respect to the inexorable, whether that means the mark of disability or the unconquerability of disease.The story of affliction always raises and masks in certain respects the problem of suffering as the collective representation of our experience of subjectivity where that experience passes through (...) the separateness of being marked to the singularity of being without hope. (shrink)

Representing disability -- Narrating disability -- Stravinsky's aesthetics of disability -- Madness -- Idiocy -- Autism -- therapeutic music theory and the tyranny of the normal.

This book reconceives disability as a set of social relations and practices, as experienced embodiment, and as an emancipatory movement, as well as a biomedical phenomenon. The author brings new attention to complex ethical questions surrounding disability, looking at not only the biomedical understanding of impairment, but also its cultural representations and social organization.

Relationships between disability and bioethics are often fraught, particularly when we are concerned with imagining possible futures. The futures imagined for disabled people are often futures without disabled people, utopias where disability has been cured, defeated, or overcome. How might we build better disability futures in a discipline so often committed to futures without disability? Here, I call for more creative inquiries into disability through research, representation, education, and engagement with disabled expertise.

In the virtual world, people can reconstruct their identity the way they want with avatars. Many expect the high degree of freedom in avatar customization will give new chances to socially marginalized people experiencing discrimination against their physical traits. Accordingly, research on a virtual embodiment of marginalized people has been steady with increased interest in equity and inclusion. However, even discourse alienates people with disabilities. In addition, there are few studies on the virtual representations of people with disabilities. Therefore, this (...) paper explores the shared perception of avatar-based disability representations among people with disability to help understand how they want to construct their disability with avatars. The study also gives direction for a barrier-free virtual world. We conducted semi-structured in-depth interviews with people with physical impairments who used virtual world services and performed a core-periphery analysis of social representations. This study expands the range of academic adoption of the social representations theory and provides insights for stakeholders such as service providers to design an inclusive virtual world. (shrink)

L’évolution de la terminologie relative au handicap intellectuel a été examinée pour comprendre les débats sur les préférences linguistiques. Les articles de journaux néerlandais publiés entre 1950 et 2020 et contenant des termes relatifs au handicap intellectuel ont été analysés à l’aide d’une analyse de contenu quantitative et qualitative. Les résultats ont montré que la terminologie liée au handicap intellectuel a changé dans la presse en faveur de celle adoptée par les organisations de personnes handicapées, les universitaires et le gouvernement. (...) L’utilisation de termes comme “faible d’esprit” ou “mongolien” est en recul. Cependant, les journaux ont continué d’utiliser certaines expressions dépassées et péjoratives. Dans des situations sans rapport avec la déficience, les termes liés au handicap intellectuel – en particulier les termes “idiot” et “retardé” – sont fréquemment utilisés pour renforcer une opinion négative. Les lecteurs de journaux néerlandais sont donc confrontés à une multitude déroutante de termes liés à des représentations disparates des personnes handicapées, qu’ils soient désuets et négatifs, ou positifs et inclusifs. (shrink)

Cinema serves as a mirror, reflecting the development or state of society. It plays an important function in entertainment and education and can bring about a shift in our perspectives and attitudes. The article includes a descriptive analysis of Deaf Culture as a prominent subject in the movies Sound of Metal () and CODA () and clarifies the most prevalent misconceptions about disability in both films. In recent years, filmmakers have made an effort to create true and authentic representations (...) of Deaf Culture, moving beyond the notion of a tokenized portrayal of the Deaf. They shifted the emphasis away from unwarranted sympathy towards perceptive analyses of Deaf characters with the aim of dismantling the embarrassing perception of deafness. Filmmakers have provided the Deaf population with a voice by giving real-life Deaf performers a place in mainstream cinema. Even though many efforts have been made, the article also shows that the mainstream media have not generally represented the Deaf Community favourably. Furthermore, the article looks at the psychological conflict that arises when hearing people and hearing-impaired people share the same room. (shrink)

The visible condition of a person in bodily pain or of a person who has lost autonomy, social status or self–representation, reveals to some degree an invisible reality which is present in every human being. Assuming the validity of this premise, my primary purpose in the following paper is first to reflect upon social and cultural attitudes that consider disability and vulnerability as a boundary and a threat; and secondly, to propose an alternative in transgressing the differences of (...) socio - anthropological boundaries in order to enable dynamic communication with fellow human beings, and ultimately, to bring about the true human flourishing. The structure of my argument is threefold. In a first part my focus is stressed upon concerns of those living with a physical condition of disability and a mainstream socio–cultural attitudes towards it. In the second part, my attention will be on the meaning of vulnerability associated with, but distinct from the notion of disability. Thirdly, I will elucidate my argument with concrete examples from the L´Arche community - where people with and without disabilities are living together in mutual interdependency and cooperation. (shrink)

Literatures of Madness: Disability Studies and Mental Health brings together scholars working in disability studies, mad studies, feminist theory, Indigenous studies, postcolonial theory, Jewish literature, queer studies, American studies, trauma studies, and comics to create an intersectional community of scholarship in literary disability studies of mental health. The collection contains essays on canonical authors and lesser known and sometimes forgotten writers, including Sylvia Plath, Louisa May Alcott, Hannah Weiner, Mary Jane Ward, Michelle Cliff, Lee Maracle, Joanne Greenberg, (...) Ann Bannon, Jerry Pinto, Persimmon Blackridge, and others. The volume addresses the under-representation of madness and psychiatric disability in the field of disability studies, which traditionally focuses on physical disability, and explores the controversies and the common ground among disability studies, anti-psychiatric discourses, mad studies, graphic medicine, and health/medical humanities. (shrink)

Given its subject matter, biological psychiatry is uniquely poised to lead STEM DEI initiatives related to disability. Drawing on literatures in science, philosophy, psychiatry, and disability studies, we outline how that leadership might be undertaken. We first review existing opportunities for the advancement of DEI in biological psychiatry around axes of gender and race. We then explore the expansion of biological psychiatry’s DEI efforts to disability, especially along the lines of representation and access, community accountability, first (...) person testimony, and revised theoretical frameworks for pathology. We close with concrete recommendations for scholarship and practice going forward. By tackling head-on the challenge of disability inclusion, biological psychiatry has the opportunity to be a force of transformation in the biological sciences and beyond. (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)

I argue that the lived experience of disabled people should be validated instead of a facile categorization. Thus far, a disabled sensibility is reduced to a categorical interpretation. Through my examination of a theoretical performance I illustrate how a disabled/able persona negates a disabled sensibility and allows an audience to experience the exotic disabled without examining their own `ableism'. Sobchack's and Clark's examinations demonstrate how both the techno-body and the cyberbody continue to devalue a disabled embodiment and sensibility. In the (...) final section of the article I explore how Deleuze's concept of `difference in itself' can free disabled people from the concepts of identity, hierarchy, representation and categorization that have been employed to devalue their embodiment and sensibility. Moreover, I believe that Deleuze's alternative theory of `difference in itself' can validate a disabled embodiment and sensibility. (shrink)

Samuel Beckett and Jorge Luis Borges have presented 20th century literature with a distinctive gallery of solitary figures who suffer from a series of physiological ailments: invalidism, decrepitude, infirmity and blindness, as well as neurological conditions such as amnesia and autism spectrum disorders. Beckett and Borges were concerned with the dynamics between illness and creativity, the literary representation of physical and mental disabilities, the processes of remembering and forgetting, and the inevitability of death. This article explores the depiction of (...) physically and mentally disabled characters in Borges' Funes the Memorious (1942)—a story about an Uruguayan gaucho who has been left paralysed after a fall from a horse which simultaneously endowed him with an infallible memory and perception—and Beckett's Trilogy: Molloy (1951), Malone Dies (1951) and The Unnamable (1953). It examines the prodigious memory of Funes and the forgetful minds of Molloy and Malone with reference to influential neuropsychological studies such as Alexander Luria's twofold exploration of memory and forgetfulness in The Mind of a Mnemonist (1968) and The Man with a Shattered World (1972). The article demonstrates that in contrast to Beckett's amnesiacs and Luria's brain-damaged patient, who are able to transcend their circumstances through cathartic writing, Borges' and Luria's mnemonic prodigies fail to achieve anything significant with their unlimited memories and remain imprisoned within their cognitive disabilities. It reveals that medical discourses can provide invaluable insights and lead to a deeper understanding of the minds and bodily afflictions of literary characters. (shrink)

Nicholas Brown reviews Ato Quayson’s Aesthetic Nervousness: Disability and the Crisis of Representation. Quayson’s most recent book is both brilliant in its literary analyses and ethically acute in its discussion of disability. But how do these two moments, the textual and the ethical, relate to each other?

Proprioceptive acuity is of great significance in basic research exploring a possible neural mechanism of fine motor control and in neurorehabilitation practice promoting motor function recovery of limb-disabled people. Moreover, body representation relies on the integration of multiple somatic sensations, including proprioception that is mainly generated in muscles and tendons of human joints. This study aimed to examine two hypotheses: First, different extension positions of wrist joint have different proprioceptive acuities, which might indicate different body representations of wrist joint (...) in the brain. Second, repetitive peripheral magnetic stimulation applied peripherally to the forearm radial nerve and extensors could change proprioceptive acuity at the wrist joint. Thirty-five healthy participants were recruited then randomly divided into the real stimulation group and the sham stimulation group. The participants’ non-dominant side wrist joint position sense was tested at six extension positions within the physiological joint motion range both before stimulation and after stimulation. Results showed that proprioceptive bias among six extension positions could be divided into lower-extension position and higher-extension position. One session rPMS could influence proprioceptive bias in lower-extension position but not in higher-extension position. However, proprioceptive precision was not influenced. To conclude, proprioceptive bias may vary between different wrist extension positions due to different hand postures being related to changes in body representation, and different functions relating to proprioceptive bias and proprioceptive precision may underlie two aspects of body representation. (shrink)

United States Air Force planes fly across mountains of green forest; behind them, fine white streams of chemical spray fill the sky. The planes fly alone or in formation covering wide swaths of the entire landscape. These images of the herbicide spraying during the United States-Vietnam War are ubiquitous in media material about Agent Orange, the most heavily used of the fifteen herbicides sprayed during the war. This representation of the war does not include guns, grenades, tanks, bombs, or (...) dead bodies. Instead, contemporary documentary filmmakers offer images of airplanes and chemical barrels to provide evidence of another weapon of war, pan dead and leafless forests in an otherwise lush landscape of green, and zero in on children’s deformed bodies to show the lasting environmental and health effects of Agent Orange. In this essay I share preliminary thoughts from my new project on Agent Orange and film in the United States and Vietnam. The bulk of social science writing on Agent Orange has focused on American veterans and their fight to secure benefits, while film scholars have analyzed the Vietnam War in Hollywood movies and television. I investigate documentary film, the transnational activism that generates these films, and the representations of gender, disabilities, bodies, history and culture within them. Here I offer a close reading of two turn-of-the-twenty-first-century documentaries about Agent Orange in Vietnam. (shrink)

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

Dominant Western discourses of motherhood have depicted disabled women as incapable of being mothers. In contrast to these representations, recent literature in disability studies has argued that disabled women can provide maternal care and should therefore retain custody over their children. This literature is commendable, but its emphasis on custodial rights excludes from the category of “mother” those disabled women who cannot maintain child custody. In this article, I challenge this exclusion via an account of my experience with my (...) two mothers: my biological mother, who relinquished custody over me because of her inability to provide care, and my maternal grandmother, who raised me as her child. Theorizing this account, I argue that disability studies must adopt a conception of motherhood that recognizes both alternative kinship structures and mothers whose disabilities preclude them from fulfilling normative conceptions of maternal care. I develop such a conception by synthesizing Judith Butler's theorization of queer kinship with Donald Winnicott's rethinking of the maternal subject. I conclude by drawing on this flexible conception of motherhood to argue that my disabled mother's relinquishing of custody over me to her own mother was the very gesture in which she accepted and adopted a maternal role. (shrink)

We critically analyze four images of female Paralympians posing nude in ESPN The Magazine’s Body Issue from the years 2009, 2010, 2012, and 2014. Past literature shows that media portrayals of female Paralympians emphasize esthetically pleasing bodies, able-bodied images and asexualization. Weaving’s continuum of sexual objectification was applied to assess the varying degrees of sexual objectification showcased within each image. From a feminist perspective, discourses of heteronormativity and ableism were applied to outline the concerns with female Paralympic representation in (...) The Body Issue. We argue that by normalizing disability and sexual objectification, woman athletes are trivialized. (shrink)

This article focuses on the representation of female physical illness and disability in the works of two Arab women writers: Iraqi Alia Mamdouh’s Habbat al Naftalin [Mothballs] (1986) and Egyptian Salwa Bakr’s al ‘Arabah al Dhahabiyah la Tas‘ad ila al Sama’ [The Golden Chariot] (1991). It argues that the representation of female illness in these works centres upon the figure of the sick mother. Despite the limitations of this trope of illness, both novels offer a more complex (...) illness narrative than those of their Arab predecessors. By problematizing the representation of the sick woman/mother, both novels challenge the traditional role of the silent, sick female figure whose story remains outside the limits of representation. Finally, the article argues that this textual recuperation of the female suffering body is achieved through the employment of a mother— daughter plot which continues to represent the sick mother as socially and emotionally absent but which nevertheless renders her a central figure in the daughter’s narrative. (shrink)

L’anthropologue Roy Wagner a défini l’invention comme une manière de contester l’hypothèse selon laquelle la vie ordinaire est en grande partie déterminée. Dans ce texte, nous explorons la notion de handicap comme notion ordinaire et comme notion conventionnelle, en mettant en évidence le contraste avec la notion de normativité vitale proposée par Georges Canguilhem dans la section II du Normal et du pathologique, qui se rapprocherait de la notion d’invention que Wagner développe. Dans cette seconde approche, le concept de normativité (...) vitale décrit les efforts d’adaptation de l’individu, qu’il soit avec ou sans handicap. Alors que dans la première vision du handicap, collective, la normalisation contribue à l’altérisation du handicap (la normalisation contribue à constituer le handicap comme altérité), l’approche de l’invention de Roy Wagner, si elle était appliquée au handicap, mettrait l’accent sur la créativité individuelle. Nous défendons l’idée que cette vision différenciée du handicap, tout comme le concept de normativité vitale de Canguilhem, ouvre de nouvelles voies pour l’émancipation du handicap/des personnes handicapées au-delà du champ des représentations. (shrink)

Disability arts has traditionally been understood as that which is led, created, and/or curated by disabled artists. While disability arts and culture in Canada has continued to grow and develop over the last number of decades, I have perceived a notable lack of neurodivergent artists being included at disability arts events and community gatherings. I question if this lack of representation may be due in part to this perception of disability arts as having to be (...) led exclusively by those with lived experience of disability. In this paper, I will critically engage with concepts of inter-abled artistic collaboration, interdependency and the need to re-imagine disability arts leadership structures to better include neurodivergent artists and their allies. I will further position my ideas around this topic within the context of the roundtable discussion on the future of disability arts leadership that took place at the Cripping the Arts Symposium in 2019. (shrink)

This text aims to describe the emancipatory force noted during the analysis of the specific interactions between protagonists, then the participation of the latter in think tanks. It is mainly based on research carried out with parents of children living with disabilities for almost two decades. It highlights the contribution of the concepts of empowerment and communication power. He underlines the structural adjustments observed during the group meetings, particularly concerning group facilitation techniques, data analysis strategies, problem-solving processes, as well as (...) the evolution of collective representations. Taking into account the recommendations made by the participants, the conditions of application, the categories of adaptive attitudes and organizational behaviors, a few strings of analyst will be highlighted ; they can help to make explicit the representations of empowerment, as well as the emergence of the parents’ communication power. (shrink)

This essay begins with a Berlin memorial to the victims of National Socialist “euthanasia” killings first unveiled in 2014. The open-air structure was the fourth such major public memorial in the German capital, having followed earlier memorials already established for Jewish victims of Nazi atrocity in 2005, German victims of homosexual persecution in 2008, and Sinti and Roma victims in 2012. Planning for the systematic persecution and extermination of at least 300,000 infants, adolescents, and adults deemed “life unworthy of life” (...) long preceded and extended beyond the 12-year Nazi period of massacre linked to other victim groups. Yet those constructing collective memory projects in Berlin appear to consider these particular victims as an afterthought, secondary to the other groups. Rather than address the commemorations themselves, this essay addresses the sequence in which they have appeared in order to demonstrate a pattern of first-victimized/last-recognized. I argue that the massacre of Jews, Roma, homosexuals, and others had to come into legal jurisprudence, scholarship, and public memory projects first before the murdered disabled body and its related memorialization could be legitimized as a category of violence important in and of itself. I argue further that the delay is rooted in a shared trans-Atlantic history that has failed to interrogate disability in terms of the social and cultural values that categorize and stigmatize it. Instead, the disabled body has been seen as both a physical embodiment of incapacity and a monolith that defies historicization. An examination of the broader foundation behind delayed study and representation that recognizes the intersection of racism and ableism allows us to reconfigure our analysis of violence and provides fertile ground from which to make connections to contemporary iterations still playing out in the present. (shrink)

In this article, I propose a new model for understanding the function of representation in bioethics. Bioethicists have traditionally judged representations according to a mimetic paradigm, in which representations of bioethical dilemmas are assessed based on their correspondence to the “reality” of bioethics itself. In this article, I argue that this mimetic paradigm obscures the interaction between representation and reality and diverts bioethicists from analyzing the tensions in the representational object itself. I propose an anti-mimetic model of (...) class='Hi'>representation that is attuned to how representations can both maintain and potentially subvert dominant conceptions of bioethics. I illustrate this model through a case study of Clint Eastwood’s film Million Dollar Baby. By focusing attention on the film’s lack of adherence bioethical procedures and medical science, critics missed how an analysis of its representational logic provides a means of reimagining both bioethics and medical practice. In my conclusion, I build off this case study to assess how an incorporation of representational studies can deepen—and be deepened by—recent calls for interdisciplinarity in bioethics. (shrink)

In Ontario, Canada, autism has become widely politicized. In the last 20 years, instances of personal and organizational advocacy developed into wider-scale policy and programs. Government press releases indicate Ontario’s developing response to autism as a social policy issue, while reflecting societal perceptions and priorities surrounding autism. Informed by Critical Disability Studies and Critical Autism Studies, this article uses a content analysis to explore the manifest and latent priorities of Ontario’s provincial government displayed in press releases between 2001-2019 accessed (...) through the Ontario Newsroom, an online repository of press releases and media advisories that features different initiatives published by the government of Ontario. Press releases were selected based on the search term “autism” and analyzed in two steps. First, this article presents the most frequently used words in press release headlines. Second, key themes within press releases are explored. Press releases emphasize the stories of non-autistic people, altruists, positivists, treatment-seekers, autistic children, and normative families. What is left out is a social representation of autism. Prominent themes display ableist perceptions of autism, reproducing power imbalances and inequity based on disability and family status. These findings reveal government objectives and priorities, reflecting broader societal perceptions of autism. (shrink)

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

Cet article analyse les représentations de soi dans une campagne menée sur les réseaux sociaux contre la discrimination des personnes handicapées. Nous nous intéressons plus particulièrement à la manière dont ces représentations sont liées à divers récits et discours, et à la manière dont elles adhèrent ou défient les discours normatifs, ou encore offrent des contre-discours. Étant donné que nos représentations culturelles sont influencées par les représentations auxquelles nous sommes exposés, nous discutons également les représentations potentielles de soi que cette (...) campagne propose à son public. Notre matériel empirique est constitué d’une campagne d’activisme numérique menée sur Instagram en Suède en 2016 et construite à partie d’un ensemble de représentations de soi (photos et textes courts). La recherche combine analyse du discours et analyse visuelle en mettant l’accent sur la manière dont les personnes se présentent, dont le handicap est mentionné et/ou présenté, et dont une présentation adhère à, ou conteste, un modèle de compréhension du handicap, tel que le modèle médical ou le modèle social. Globalement, nous trouvons un ensemble diversifié de revendications, toutes ayant pour objectif commun de reconnaître et de rendre visible la discrimination, et d’apporter des changements. Les récits identifiés montrent la variété de stratégies adoptées pour comprendre le handicap et les diverses manières dont les gens se rapportent aux discours établis sur le handicap. Grâce à cette campagne, les blogueurs ont pu trouver et apporter un soutien, mais ils ont également pris la parole en demandant au public d’écouter. La campagne examinée dans cette recherche peut en outre être perçue comme un effort et un pas en avant vers une visibilité et une politisation accrue du handicap. (shrink)

This essay considers Denis Diderot’s Letter on the Blind for the Use of Those Who Can See as a work that can contribute to a disability political theory. By recounting the experiences of visually impaired persons in their own words, Diderot opens up possibilities for a disability politics of self-representation, maintaining that sighted persons should listen to blind persons’ accounts of their own experience rather than relying on their own imaginings and assumptions. By using blind experiences to (...) challenge a philosophical problem that intrigued philosophers of the seventeenth and eighteenth centuries amid often-unsuccessful efforts to “cure” blindness through cataract surgeries, Diderot develops a powerful critique of the empiricist stress on vision as the primary source of perception and provides a remarkably forward-looking critique of disablist attitudes toward the blind. Through this philosophical discourse, he engages a political argument about the way knowledge is gathered, evaluated, and interpreted through relationships of power. (shrink)

In the social system in which we live, the imaginary body is an able body. The able-bodied has established its representations that are the projection of able-bodied subjectivities. In this article, I shall develop a psychoanalytic account of physical disability in order to open up possibilities for physical disability beyond its position as castrated able-bodiedness. Psychoanalysis, to me, is not simply about `sexuality' but can also be used to analyse `physical disability', indeed all aspects of one's subjectivity. (...) I shall propose the appropriation of psychoanalysis to explain the construction of subjectivity, whether it is able-bodied or disabled, in a way that parallels the male/female dichotomy. Within an able-bodied symbolic, in which the able-bodied takes itself as normal, it is impossible to illustrate the multiplicity of the disabled. Following Irigaray's claim that the ambiguity of female sexuality does not conform to male notions of sexuality, I argue that the complexity of the disabled body does not fit into the able-bodied norm of subjectivity. In this article, I shall be drawing on Irigaray's theory of embodied subjectivity to argue against the masculine-able-bodied-based theory of subjectivity found in Freud and Lacan. (shrink)

The article explores the potential “healing” role performance art can have when representing disabling trauma, and engaging, as part of the creative process, participants who have experienced in their lives significant trauma and physical, as well as mental health concerns arising from gender violence. It focuses on the show cicatrix macula, performed during the exhibition Speaking Out: Women Healing from the Trauma of Violence (Leicester, 2014). The exhibition involved disabled visual and creative artists, and engaged participants in the process of (...) performance making. It was held at the Attenborough Arts Centre in Leicester (UK), a pioneering arts centre designed to be inclusive and accessible. The show cicatrix macula focused on social, cultural, mental, and physical representations of trauma and disability, using three lacerated life-size puppets to illustrate these depictions. Working under the direction of the audience, two artists attempted to “repair” the bodies. The creative process was a collaborative endeavour: the decision-making process rested with the audience, whose privileged positions of witness and meaning-maker were underscored. Fayard demonstrates the significance of cicatrix macula in debunking ablist gender norms, as well as in highlighting the role played by social and cultural enablers. She calls attention to its potential for mobilizing positive identity politics, including for viewers who had experienced trauma. For example, the environment of the participatory performance space offered some opportunities for the survivor to become the author or arbiter of her own recovery. In addition, the constant physical exchange of bodies within this space of debate was well-suited to the (re)connection with the self and with others. (shrink)

The aim of this study was to characterize the knowledge about the joy in children with mild intellectual disability. The premises relating to mental functioning of these children suggest that this knowledge is poorer and less complex than the knowledge of their peers in the intellectual norm. The study used the authoring tool to measure children’s knowledge of emotions including the joy. This tool takes into account the cognitive representation of the basic emotions available in three codes: image, (...) verbal, semantic and interconnection between the codes - perception, symbolization and conceptualization which perform the functions of perception, expression and understanding. The study included children with the intellectual norm and children with mild intellectual disability. The obtained results mainly indicate the differences in how the happiness is understood by particular groups, to the detriment of children with disability. The character of the results is largely determined by the level of organization of knowledge about the joy and accompanying mental operations. The results will be discussed, among others, in the context of the adjustment of the programs of lasting increase of happiness for people with intellectual disability. (shrink)

The purpose of this paper is to explore the visual representation of dignity, through the particular example of the seventeenth century Spanish painter Diego Velázquez. Velázquez works at a point in Western history when modern conceptions of dignity are beginning to be formed. It is argued that Velázquez' portraits of royalty and aristocracy articulate a tension between a feudal conception of majesty and a modern conception of the dignity of merit. On this level, modern conceptions of dignity of merit (...) are understood in terms of a struggle to excel in particular activities, and thus to overcome the risk of failure. More radically, Velázquez' portraits of dwarfs and the mentally disabled are argued to be expressive of dignity, not by finding a positive representation of the sitter's dignity, or to find scales of activities by which they can be positively assessed, but rather by grounding their dignity, negatively, in a protest against indignity and humiliation. Drawing on Honneth's analysis of dignity in terms of a theory of recognition, it is argued that the indignity of the court dwarf lies in the fracturing of their communication with the rest of society. The task of repairing that fractured communication is achieved, not by representing a dignified ideal, but rather by drawing attention to the prejudices that serve to exclude the humiliated from full participation in society. In conclusion, it is suggested that the conceptualisation and representation of the elderly today finds effective exemplars in Velázquez' portraits of court dwarfs, rather than in his portraits of the elderly. (shrink)

En 2014, la Suisse a ratifié la Convention des Nations Unies relative aux droits des personnes handicapées, qui établit comme l’un de ses principes directeurs la participation et l’intégration pleines et effectives des personnes handicapées dans la société. La présente étude examine l’expérience vécue et l’agentivité des personnes handicapées vivant en Suisse en ce qui concerne les stratégies d’adaptation auxquelles elles ont eu recours en réponse aux obstacles à leur participation dans des domaines de la vie tels que l’éducation, la (...) formation professionnelle et l’emploi. Vingt-six personnes représentant quatre groupes de handicaps (mobilité, visuel, psychosocial, intellectuel et développemental) et trois cohortes d’âge (nées vers 1950, 1970 ou 1990) ont participé à des entretiens semi-structurés sur le parcours de vie. Les récits montrent comment les individus ont fait face aux contraintes structurelles de leur participation de différentes manières et en fonction de leur situation individuelle. Toutefois, les stratégies d’adaptation identifiées peuvent être classées en trois grands types (adaptation, évitement et confrontation), qui représentent différentes formes d’agentivité avec des perspectives différentes de démantèlement des contraintes structurelles. L’article examine les implications théoriques et pratiques en ce qui concerne la maîtrise des contraintes structurelles et l’amélioration de l’agentivité et de la liberté de choix des personnes handicapées. (shrink)

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of (...) Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy. (shrink)

Over the past decade, representations of pregnant embodiment, foetal imagery and the maternal body have become the subject of intense feminist investigation across fields as diverse as philosophy, science and cultural studies. This body of work represents a sustained intervention in the politics of reproduction and the politics of representation that builds on earlier feminist discourses on motherhood. Within this article, I want to address the limits of, and ruptures in, the representation of the maternal body in relation (...) to particular examples of visual art practice. The article focuses on four pregnant figurations that seem to constitute certain limit points in the representation of maternal embodiment: the `phantom' pregnant body; the elderly prima gravida; the pregnant woman with disabilities; and young women undergoing abortion. My argument is that, in these particular visual texts, `being pregnant' is represented as an unnatural rather than a natural state and as a cultural rupturing of feminine and maternal norms. This seems to offer a useful starting point from which to interrogate the relations between prevailing discourses around the maternal subject and the unstable subject of pregnancy. (shrink)

This essay addresses the link between sex trafficking and European citizesnhip by examining several anti-trafficking campaigns launched in post-socialist Europe. In illustrating which techniques are used in the production of images, it points to the highly symbolic and stereotypical constructions of femininity (victims) and masculinity (criminals) of eastern European nationals. A close analysis of female bodies dispayed in the campaigns indicates that the use of victimizing images goes hand in hand with the erotization of women's bodies. Wounded and dead women's (...) bodies are read as attempts to stabilize the current political and social transformations in Europe by capturing women within the highly immobile boundaries of the sign ‘Woman’. The essay suggests that the representation of violence is thus violent itself since it confirms the stereotypes about eastern European women, equates the feminine with the passive object, severs the body from its materiality and from the historical context in which trafficking occurs, and finally confines women within the highly disabling symbolic register of ‘Woman’ as to maintain an imaginary social order in Europe. (shrink)

Pattadath and Rose, in their thoughtful responses, create room for textual dialogue by making connections and thinking about madness, lived experience, and research and knowledge production in other contexts. I am grateful for this engagement, and the opportunity to clarify my own thoughts, as well as generate new ones.Rose makes crucial points about the relative silence in many critical fields outside of Disability and Mad Studies and their “probably unknowing refusal to see madness as political”. This is often the (...) case, and can be extended to disability and chronic illness more broadly. At times, critical scholars in other fields show how the psy-disciplines are tools used to... (shrink)

The following paper examines the cyberpunk transhumanist graphic novel Transmetropolitan through the theoretical lens of disability studies to demonstrate how science fiction, and in particular this series, illustrate and can influence how we think about disability, impairment and difference. While Transmetropolitan is most often read as a scathing political and social satire about abuse of power and the danger of political apathy, the comic series also provides readers with representations of impairment and the source of disability as (...) understood by the Social Model of Disability (SMD). Focusing on the setting and fictional world in which Transmetropolitan takes place, as well as key events and illustration styling, this paper demonstrates that the narrative in this work encompasses many of the same theoretical underpinnings and criticisms of society’s ignorance of the cause of disability as the SMD does. This paper aims, by demonstrating how Transmetropolitan can be read as an allegory for the disabling potential of society as experienced by individuals with impairments, to prompt readers into thinking more creatively about how narratives, seemingly unconcerned with disability, are informed and can be understood via disability theory. (shrink)

This article describes research to build an embodied conversational agent as an interface to a question-and-answer system about a National Science Foundation program. We call this ECA the LifeLike Avatar, and it can interact with its users in spoken natural language to answer general as well as specific questions about specific topics. In an idealized case, the LifeLike Avatar could conceivably provide a user with a level of interaction such that he or she would not be certain as to whether (...) he or she is talking to the actual person via video teleconference. This could be considered a extended version of the seminal Turing test. Although passing such a test is still far off, our work moves the science in that direction. The Uncanny Valley notwithstanding, applications of such lifelike interfaces could include those where specific instructors/caregivers could be represented as stand-ins for the actual person in situations where personal representation is important. Possible areas that come to mind that might benefit from these lifelike ECAs include health-care support for elderly/disabled patients in extended home care, education/training, and knowledge preservation. Another more personal application would be to posthumously preserve elements of the persona of a loved one by family members. We apply this approach to a Q/a system for knowledge preservation and dissemination, where the specific individual who had this knowledge was to retire from the US National Science Foundation. The system is described in detail, and evaluations were performed to determine how well the system was perceived by users. (shrink)