Search

This dissertation describes an ethnographic project exploring pain, communication, and disability. Assessing and relating to pain is a fundamental endeavor, not just of Western biomedical practitioners, but of any type of caregiver, and it is a task that is rendered even more difficult when pain is experienced by people who do not have access to words. The DisDAT, or Distress and Discomfort Assessment Tool, is a form developed in the UK designed to allow clinicians to avoid, or at least mitigate, distress among nonverbal patients by documenting their personalized distress and contentment cues. I conducted my primary ethnographic research for this dissertation embedded within and alongside a clinical team at my field site as they seek to facilitate the adoption of the DisDAT at their hospitals. In addition, I used creative autoethnographic photography to explore the resonances between my personal experiences of pain and disability and those of my interlocutors. Ethnographic methods used in this study included qualitative interviews, content analysis, participant-observation, and autoethnography.This ethnographic project takes the DisDAT tool itself as a starting point to explore several distinct but nested aims. I ask what the goals and difficulties of the DisDAT implementation project can reveal about bureaucracy and the pursuit of quality in the U.S. medical system as a while. I also explore how family members and professionals understand signs of pain or distress and translate them into the “vocabulary” represented by the DisDAT, along with how kinship and the work of care are constituted through the form. Finally, I use autoethnography to examine what claims can be made about the universality versus individuality of both pain and disability and the communication of pain experience through artistic work.These are complex theoretical questions, and also urgent pragmatic ones that caregivers must seek to answer every day. By engaging ethnographically with medical caregivers and family members of patients who are involved in the DisDAT project, I hope to assist them in answering these questions for themselves, as well as contribute to the evolving anthropologicalliterature on this topic.

This dissertation explores the intersection of medical care and authorial self-representation in Middle English literature, reading canonical literary works and medical texts alongside one another to reveal the shaping influence that healthcare practices and literary production exerted on each other. Informed by medical humanities methodologies, this dissertation argues that just as popular medical texts made use of literary techniques and conventions, so too did literary authors turn to medical discourses in their efforts to communicate experiences of illness or impairment. Approaching these two practices as inextricable makes possible an exploration of medieval authorship that accounts for the entangled nature of cultural care and medical cure.An introductory chapter provides an overview of medical practice in late medieval England, paying particular attention to the relationships between practitioners and patients and to the texts that record popular experiences of healthcare, such as remedy collections and autobiographical accounts. Figuring the patient not simply as a collection of symptoms and diagnoses but as embedded in a particular cultural and historical network of relations, the next two chapters redefine “embodied writing” in order to account for both the body itself and for the processes of maintenance and repair that define life within it. Chapter One suggests that the devotional verse of the fifteenth-century priest John Audelay, produced while its author was blind, deaf, and bedridden, forwards a poetics marked by the incremental forms of medical care he received. Chapter Two demonstrates that Julian of Norwich’s account of her obstructed revelatory Shewings utilizes medical figurations of visual impairment to conceptualize alternative forms of connection to the divine. In its second half, the dissertation reverses the paradigm that defines Chapters One and Two, exploring how medical writers drew on literary practices in their constructions of professional authority and personal experience. Genres like the almanac (Chapter Three) and the medical miscellany (Chapter Four) afforded unique spaces for literary experimentation and didactic connection. These chapters also move the dissertation into the fifteenth century in their consideration of how the transmission of medical knowledge shifted with the introduction of print.

This paper is the third in a series of narrative reviews challenging core concepts in oral health research and practice. Our series started with a framework for Inclusion Oral Health. Our second review explored one component of this framework, looking at how intersectionality adds important complexity to oral public health. This current manuscript drills into a second component of Inclusion Oral Health, exploring how labels can lead to 'othering' thereby misrepresenting populations and (re)producing harms. Specifically, we address a common oral public health label: vulnerable populations. This term is commonly used descriptively: an adjective (vulnerable) is used to modify a noun (population). What this descriptor conceals is the 'how,' 'why,' and 'therefore' that leads to and from vulnerability: How and why is a population made vulnerable; to what are they vulnerable; what makes them 'at risk,' and to what are they 'at risk'? In concealing these questions, we argue our conventional approach unwittingly does harm. Vulnerability is a term that implies a population has inherent characteristics that make them vulnerable; further, it casts populations as discrete, homogenous entities, thereby misrepresenting the complexities that people live. In so doing, this label can eclipse the strengths, agency and power of individuals and populations to care for themselves and each other. Regarding oral public health, the convention of vulnerability averts our research gaze away from social processes that produce vulnerability to instead focus on the downstream product, the vulnerable population. This paper theorizes vulnerability for oral public health, critically engaging its production and reproduction. Drawing from critical public health literature and disability studies, we advance a critique of vulnerability to make explicit hidden assumptions and their harmful outcomes. We propose solutions for research and practice, including co-engagement and co-production with peoples who have been vulnerabilized. In so doing, this paper moves forward the potential for oral public health to advance research and practice that engages complexity in our work with vulnerabilized populations.

Applying a critical feminist disability studies framework, I look closely at televisual women inmates with mental illness to demonstrate how the dynamics between one’s body and one’s environment co...

Scholars in disability studies have recently sought to account for fatness, claiming an inseparable link between disability and fat scholarship. Interrogating the stigmas of fatness as a sign of ba...

Writing out of the togetherness of life with his son Adam Brock, Brian Brock’s Wondrously Wounded: Theology, Disability, and the Body of Christ offers a unique theological methodology that embodies...

In this dissertation, I put disability studies scholarship in conversation with black studies scholarship to read for the ways that medicine, law, and popular culture grapple with, create, and contest the boundaries of an acceptable range of white difference and diversity of embodiment and ability, and for the ways this negotiation takes place against an always already present “contempt for the categorized difference of the Other,” particularly the black Other. I situate this inquiry within several key debates in disability studies, most notably the debate between the “medical” and “social” models of disability, as well as what I will call the “discursive” extension of the social model of disability. To this end, this dissertation examines a set of laws, films, and historical documents through the combined frameworks of black studies, disability studies, and film and media studies to ask how racial ideologies and practices have constructed disability as a social and medical category in law, scientific inquiry, and cultural production since the mid-twentieth century. My methodology is insistently interdisciplinary, including archival research, legal analysis, the collection of original social science data from public databases, and film and literary analysis. I have organized the main chapters of this dissertation to explore four key developments over the last half century that address my central questions: post- World War II rehabilitation efforts and their relationship to the Tuskegee Syphilis Study; the War on Drugs of the 1980s and its relationship to the “special needs” category in adoption law; contestation over the “companionship services” exemption to the Federal Labor Standards Act; and the contemporary Transhumanist movement. Disability studies raises important questions about inclusion, access, representation, embodiment, space, and reproduction. By incorporating black studies and critical race scholarship, I analyze the way extant racial categories shape most profoundly: 1) what conditions qualify as a recognized disability, 2) who counts as a legible and legitimate disabled subject, and 3) how legal and labor practices govern and respond to disability so defined.

Individuals with intellectual disability are often left out of and overlooked in discussions on sexual health and sexuality. Given this, we undertook a participatory theatre research project to better respond to the needs of the individuals with intellectual and developmental disability regarding their sexual agency and sexual citizenship. The project, entitled Romance, Relationships, and Rights arose when the executive director of a community living agency approached researchers at the University of British Columbia’s Canadian Institute for Inclusion and Citizenship to learn about how they, as an agency, could better support their community. To disrupt sexual ableism and traditional theatre hierarchies, we collaboratively turned to participatory and disability theatre with the aim to advance and promote the sexual citizenship of individuals with intellectual and developmental disability, who refer to themselves as self-advocates - those who speak and act with agency. The challenges of equitable co-creation arose throughout the theatre process; the themes of deconstruction/co-construction and uncertainty and liminality reveal the iterative process of centering self-advocate voices.

People with learning disabilities’ experiences of punishment and prison life remain invisible within prison policy and research. With participants’ voices central, this paper makes visible the hidden harms experienced by a hidden population, exposing the multi-faceted and nested forms of harm that people with learning disabilities encounter while in prison as a result of direct and indirect discrimination. It highlights the ways in which they navigate prison life and respond to structural and inaccessible barriers that adversely impact their understanding of their sentence, access to services, and ontological security. By drawing together conceptual and methodological insights from disability studies and prison sociology, I offer new insights into the distinct yet challenging aspects of prison life for people with learning disabilities.

This essay explores the complex entanglement of new reproductive technologies, genetics, health economics, rights-based discourses and ethical considerations of the value of human life with particular reference to representations of Down’s syndrome and the identification of trisomy 21. Prompted by the debates that have occurred in the wake of the adoption of non-invasive prenatal testing (NIPT), the essay considers the representation of Down’s syndrome and prenatal testing in bioethical discourse, feminist writings on reproductive autonomy and disability studies and in a work of popular fiction, Yrsa Sigurdardóttir’sSomeone To Look Over Me(2013), a novel set in Iceland during the post-2008 financial crisis. It argues that the conjunction of neo-utilitarian and neoliberal and biomedical models produce a hostile environment in which the concrete particularities of disabled people’s lives and experiences are placed under erasure for a ‘genetic fiction’ that imagines the life of the ‘not yet born’ infant with Down’s syndrome as depleted, diminished and burdensome. With close reference to the depiction of Down’s syndrome and learning disability in the novel, my reading explores the ways in which the generic conventions of crime fiction intersect with ideas about economics, politics and learning disability, to mediate an exploration of human value and social justice that troubles dominant deficit-led constructions of disability.

Introduction The intersection of non-heterosexuality, gender and disability became a prolific field of research among both queer, crip and disability studies scholars, though focusing mainly on Western regions. The article discusses how women narrate their everyday intimate and care-related experiences situated in ableist and heteronormative regimes of Central and Eastern Europe (CEE). The aim of this article is to scrutinise the care regimes as experienced, navigated and reported by non-heterosexual women with disabilities in Poland, a country characterized by institutionalisation, lack of individualised disability support, and state homophobia. Methods The study is based on qualitative methods, namely semi-structured, in-depth interviews. We conducted interviews with 11 non-heterosexual disabled women living in Poland. The sampling was based on three criteria: gender, self-identification as a disabled person, and experience with being in a same-sex relationship (8 out of 11 participants were in a homosexual relationship during the time of the interview). All eleven participants identified as non-heterosexual women (most as lesbians, one as bisexual and one as pansexual) and had a congenital physical disability (including cerebral palsy, spinal muscular atrophy, muscular dystrophy). None of the interviewees had an intellectual disability. Results By tackling care regimes, our analysis explores women’s experiences in the context of discursive confusions resulting from being at the intersection of often-contradictory local narrations on gender, disability, and sexuality. We identified three intertwined processes to understand and explore how care regimes work in Poland: (1) the separateness between queer and disabled policies and discourses, (2) the co-opting/obscuring of homosexual relations between women by category of care, (3) familiarisation of care and its consequences for non-heterosexuality. Policy Implication We suggest that social support systems must better address the needs of non-heterosexual women with disabilities which are profoundly impacted by structural, political and cultural constraints and possibilities.

This article critiques how the chromosomal condition ‘trisomy 21’ (‘T21’) (‘Down syndrome’) was originally conceptualised using colonial, scientific and medical discourses on ‘race’ and ‘idiocy’. Nineteenth century discourses surrounding ‘degeneracy’ commonly intertwined the notions of ‘race’ and ‘idiocy’. In Observations of an Ethnic Classification of Idiots, Down categorises people with T21 as ‘Mongolians’ because of their purported similarities to ethnic ‘Mongolians’. The discourse-historical approach (DHA) to critical discourse analysis (CDA) is used in this article to examine how the ‘Mongolian idiot’ is constructed by Down as the ‘other’, being simultaneously a ‘racial other’, a ‘disabled other’, and an ‘idiotic other’. Down theorises that ethnic ‘Caucasians’ with ‘idiocy’ have ‘retrogressed’ to primitive forms as characterised by the ‘Mongolian family’. His report also essentialises the ‘Mongolian idiot’, defining their ‘degeneracy’ and ‘otherness’ in terms of their physical, behavioural, and mental characteristics. Whilst Down’s ‘mongolism’ has since been refuted, aspects of his report are reproduced in some contemporary medical and scientific discourses. Although these discourses are less essentialist than Down’s, they persist in constructing the ‘otherness’ of T21, by foregrounding its ‘abnormalities’ and ‘disorders’. Significantly, facets of ‘degeneracy’ appear in evolutionary developmental biology, connecting T21 with ‘atavisms’, though without the racial framework.

Using Critical Disability Studies and Critical Autism Studies lenses, this article examines the first season of the Netflix series Atypical, a comedy/drama coming of age story centred on an autistic teenager and his family. Atypical promotes heightened visibility for autistic people in popular culture. However, in its first season, its construction of autism reveals a broader cultural valuation of particular forms of disability that can be managed and reformed, reflecting a medical model. It also does not engage the intense invisibility and bias against non-speaking autistic people, which in turn bolsters ideals of normality ( Mitchell & Snyder 2000 ; Darke 1998 ). Notably, the show’s main character is played by an actor who is not autistic and who can control and manage his autistic characteristics, and its first season only included one small part for an autistic actor, a part that was created retroactively to fit with the show; this made it exemplary of a retrofit ( Dolmage 2017 ). At the same time, normality is reproduced through the deployment of conventional and gendered family roles to illustrate how autism should be managed primarily by women. Ultimately, through the processes of playing autistic, retrofitting, moralizing conformity, and reproducing conventional family roles, the show’s first season promoted a very palatable and normalized form of autism. However, reception of the first season and the backlash it received led to changes in the second and third seasons, providing an excellent example of how autistic advocacy can shape popular culture.

Background: Common warts frequently occur over the hands and may overlie critical structures, including the extensor expansion of the digits, for which cryotherapy can lead to manual disability. Aims and Objectives: We aim to implement big data to infer knowledge on the interest of web users regarding the dorsal expansion-related manual disability in verrucae vulgaris patients managed with cryotherapy. Materials and Methods: We mapped the interest of users of the surface web in connection with five topics: cryosurgery, extensor digitorum muscle, human papillomavirus, manual disability, and verruca vulgaris. We retrieved longitudinal data [2004-2019] concerning the spatio-temporal variations of interest in these topics, using Google Trends. We are also reporting a case of interest while analyzing it using the Bradford Hill criteria. Results: Sixty-four nations contributed to the spatial (geographic) map, including ten countries from the Middle East and the north of Africa (15.63%). There was high temporal variability concerning cryosurgery 29.61 (+/- 0.94), extensor digitorum muscle 64.43 (+/- 0.86), human papillomavirus 0.01 (+/- 0.01), manual disability 2.89 (+/- 0.13), and verruca vulgaris 9.39 (+/- 0.20). Conjoint inference, via Post-Hoc testing and neural networks [machine learning], assigned the highest synaptic weight [effect size] to “cryosurgery” and “extensor digitorum muscle”, thus indicating that these topics are of prime interest for web users, including anatomists and dermatologists. Conclusions: We are conveying two messages: 1) Dermatologists are encouraged to collaborate with data scientists to realize the importance of big data for evidence-based dermatology. 2) Physicians should exercise extra caution in managing patients with verrucae vulgaris using cryotherapy.

This article takes a feminist disability studies approach to the analysis of the responses of women with visual impairments to representations of blindness, disability, and gender in advertising. E...

This paper describes how four ‘helping’ professionals came to embrace and teach critical disability studies (CDS) perspectives rather than biomedical approaches to impairment and disability that traditionally inform those professions (occupational therapy, physiotherapy, social work, and speech-language pathology). Sharing examples from our experiences, we describe how we came to question the normative, ableist assumptions of our professional disciplines. We then briefly outline literature demonstrating how critical approaches have been incorporated into professional research and practice and discuss possible obstacles and tensions in adopting more widespread critical approaches into professional spaces. We conclude by suggesting that continued development of connections among scholars and activists within CDS, rehabilitation and social work, and the community, is necessary to ensure that intersectional critical perspectives in relation to disability become a core component of professional training programs.

The present article critically reflects on the use of visual method and specifically emojis when interviewing young students diagnosed with autism. Based on disability studies and visual method, the following questions are discussed: What are the opportunities and limitations of using emojis in the individual interview situation? Which questions are possible to ask – and which are not? The aim of the article is to critically discuss the use of emojis in the individual interview situation. Four challenging phases in which use of emojis is multi-dimensional are illustrated. The phases are: Changed positions in the interview situation. Which questions are possible to ask? Which answers are possible to give? Use of emojis to evaluate the experience of being interviewed. The article highlights how emojis enable the expression of emotional nuances, while also giving rise to some difficulties in asking follow-up questions on a “deeper level”.

This article explores the semiotic relationships between Applied Behavior Analysis research, special education practice and restraint and seclusion policy by tracing the evolution of the concept of “self-restraint,” —a term from Behavior Analytic literature for a variety of “behaviors” in which a person restricts their own movement. I trace how “self-restraint” emerges as a new class of behaviors eligible for intervention, and how this marks certain bodies for restrictive practices such as restraint, seclusion and the use of aversives. I explore how rhetorical moves shape the educational landscape of disabled students and expose mechanisms of control that are shaped by scholarship. By using “self-restraint” as an example, I respond to the taxonomies of deficit disseminated through Applied Behavioral Analysis in schooling for neurodivergent students and make critical links between special education practice and Disability Studies in Education.

This essay brings together scholarship in biometrics and disability studies with conversations in transnational rhetorical studies to build a theoretical framework that examines the (re)emergence a...

This article explores the links between witchcraft and deformity in early modern English literature. Although historians of witchcraft have not examined the concept of deformity or stigma within wi...

Visual methods are often used in social science because of the potential for inclusivity and accessibility. In disability studies in particular, inclusive research is widely viewed as best practice and visual methods are often considered more accessible than traditional research methods. However, visual methods can encounter challenges at the stage of analysis: it is at this stage that either rigour or inclusivity are most likely to be compromised. This paper focuses on the use of interpretive engagement to overcome such challenges in the analysis of photovoice findings. Drawing on experience of using this method of analysis with 16 people with learning disabilities in the England, we first briefly outline some of the tensions that can emerge when attempting to improve inclusion in research, before going on to describe the analytic process used as way of addressing some of these tensions. The inclusiveness of interpretive engagement contributed to the rigour and meaningfulness of the findings by revealing layers of meaning which gave access to a multi-dimensional understanding of the phenomenon in question.

We herein, describe the rationale, content, methodology and evaluation of a health humanities module in the new competency-based curriculum, and share our experience of the same. Providing training in health humanities to the healthcare trainees will definitely go a long way in having a professional and responsive Indian medical graduate, who is able to provide empathetic and holistic healthcare to all sections of the society.

Calls for justice-centered education approaches have gained traction over the years. Yet given the entrenched inequities that disproportionately harm multiply-marginalized students of color, it is evident that they remain incomplete. Using a specific incident as our launching point, we explore current conceptualizations of justice through a disability critical race theory (DisCrit) contrapuntal reading of four prolific intellectuals whose work is often not in conversation: Nancy Fraser, Iris Marion Young, Mia Mingus, and Talila Lewis. We query, (a) How does the author conceptualize justice? (b) How does the author consider difference in relationships to justice? and (c) How does the author (re)imagine potential ways to remedy injustice? By recognizing connectedness and maintaining tensions framed within DisCrit, this article enumerates expansive conceptualizations of justice through centering multiply-marginalized communities of color.

This article examines the everyday experience of visually disabled people with norms and normality and confronts it with three approaches discussed in disability studies: (i) the medical model, (ii) the social model, and (iii) critical disability studies. The most available model to the people in the study, as well as the most widespread approach in Czech society, is the medical model. However, the text shows that although other approaches are rather marginal, their logic is present in the everyday experience of the communication partners in the research. They can espouse the rigid, medical model, while, at the same time, confronting the construction of norms that both the social model and critical disability studies defy. This finding reveals both the normative and subversive character of disability, manifested in visually impaired experience.

While there are many resources for Christian communities and leaders to understand disability through a theological lens, quite often resources may not inform practice, and little is known about ho...

Therapeutic services for people with intellectual disabilities (ID) often follow a medicalized narrative, focusing on treatment of the individual without attending to social and political factors. ...

Although disability studies researchers have long recognized the interdependence of ability and disability as socially mediated categories, few studies have taken the next logical step of examining how ability is constructed and represented in literary texts. This article pursues that line of inquiry through an analysis of the representation of vision and its limitations in James Joyce’s Ulysses, arguing that the textual construction of ability arises through the myth of the diaphanous abled body—or the assumption that nondisabled experience occurs absent bodily interference—as it relates to an analogous formal process here named the sensorytextual screen. The author shows how presumptions of what constitutes an abled body inflect the (dis)abled realism of Joyce’s novel, which at once depicts and mocks ableist presumptions. Representations of blindness, sight, and low vision thus relate intimately with modernist experiments with description and literary point of view and do so at a very fundamental level.

Epilepsy is a neurological condition defined by time; it is characterized by a lifelong tendency for recurrent, unpredictable, and unprovoked seizures, during which people lose control over parts of body-mind function. Diagnosing seizures involves using electroencephalograms to represent and classify brain waves in relation to clock time. Drawing upon ethnographic fieldwork in a North American teaching hospital, this paper shows that as neurologists learn to diagnose seizures, they internalize clock time norms for normal and abnormal brain waves. The paper demonstrates how these temporal norms work to assign a set of aesthetics to brain waves: patterns that conform to clock-time norms are beautiful, whereas hard-to-classify patterns are ugly. These aesthetic judgments follow diagnostically complex patients in future hospital visits, who become known, for instance, as “the patient with the ugly EEG.” The paper critiques this ascription of labels to patients and situates the role of the electroencephalogram's clock time in this predicament. It concludes with a speculative design project that reorients the relationship between temporality and embodiment by using the heartbeat as a situated and co-produced alternative to the standardized and invariant clock. Ultimately, the paper argues that the aesthetics of medical technology are fundamental to clinical care, thereby opening up new directions for research at the intersection of critical time studies and disability studies.

If there is no crying in disability studies, then what becomes of those whose emotions are disabling or those whose disability is invalidated because it is considered just a feeling? The article ex...

Erving Goffman’s 1963 foundational discussion of stigma has been both embraced and critiqued in disability studies and other fields. In Goffman’s interactional and ahistorical analysis, stigma was ...

This essay considers disability studies scholars’ investment in “the social” as a site of rehabilitation, recuperation, and cure in order to argue that in urban India, the case is otherwise: the pu...