Disability Studies Research Articles

Deformed bodies and the decolonial turn: unthinking and rethinking the colonial episteme in animal’s people

ABSTRACT Through a reading of Indra Sinha’s Animal’s People, this article draws upon disability studies to evolve a decolonial theoretical framework that would enable us to unthink and rethink the hegemonic neocolonial episteme that constitutes the human subject as able-bodied. Conceptually premised on a social model of disability that lays emphasis on the role of environmental barriers and negative attitudes in shaping the experience of disability, this article problematises the narrative of ability by first denaturalising such narratives and then goes on to underscore and advocate the need to normalise all other modes of being that an ableist archive of knowledge deems as abnormal. To achieve the above goal, Sinha, in his novel, adopts the decolonial strategy of giving voice and agency to the globally marginalised, intersectional subjects and narrates the story of the victims of the Bhopal industrial disaster of 1984. Such a strategy provides Sinha with a basis for interrogating the ableist episteme of coloniality and forging a politics of decolonisation that deconstructs the forms of identity and solidarity fostered by a neoliberal economic world order. In short, the article seeks to map the broader implications of a disability perspective on a decolonial politics of identity and vice versa.

Graying arts access: crafting creative online programming to promote older adults' artistic engagement in and beyond pandemic time

IntroductionDeclared a global pandemic by the World Health Organization (WHO) in March 2020, the COVID-19 virus and attendant patchwork of local, regional, and national government-initiated public health responses to it unexpectedly opened possibilities for greater access to culture for disabled and chronically ill people in ways that were unimagined in pre-pandemic times. During the “emergency” period of the pandemic, the fields of critical disability studies and aging studies independently demonstrated the importance and value of shifting to digital technologies for disabled people and older adults respectively; however, to date, little scholarship has considered the value of digital technologies for older adults aging with and into disabilities beyond pandemic time.MethodsInformed by the theoretical insights of scholarship exploring critical access and the aging-disability nexus, this paper draws from empirical data collected during Phase 2 of Direct[Message]: Digital Access to Artistic Engagement, a collaborative, community-based, arts-informed research project based in Southwestern Ontario (Canada). Drawing from 50 qualitative interviews with aging adults from un/under/represented communities, findings explore the intersections of older age and disability, including dynamics related to gender, sexuality, migration, size, race/ethnicity, and other differences, as these relate to access to and enjoyment of creative spaces before, during, and “after” the COVID-19 pandemic.ResultsResults show that older adults aging with/into disabilities in Southwestern Ontario express an overwhelming desire and even urgent need to access interactive arts programming from the relatively safe spaces of their homes both within and outside pandemic time.DiscussionAs the normative world pushed for a return to ableist normative life in 2022, a year marked by “severe” rates of the highly infectious Omicron variant and the loss of effective public measures, such as community masking and widely available testing, participants described the need for continued access to creative and social participation via remote options that sidestepped socially exclusive and physically inaccessible spaces. Findings indicate a need for increased investment in digital arts programming for older adults aging with/into disabilities.

An Interview with June Maker

Dr C. June Maker, who is a professor emerita in the Department of Disability and Psychoeducational Studies at the University of Arizona, is on the editorial board for the Gifted Child Quarterly, Gifted Education International, Gifted and Talented International, and an editorial board member for other international journals. In 2015, she received the International Research Award from the World Council for Gifted and Talented Students and a Doctor of Letters Degree from Western Kentucky University. Her research is on performance-based assessments and creativity development. She is a frequent keynote speaker, and has made numerous recent contributions to the Australasian Journal of Gifted Education (Bahar et al., 2021; Maker and Pease, 2021; Maker et al., 2021; Maker et al., 2022; Maker and Bahar, 2024; Wu et al., 2021).

Voicing (Medical) Complexity in the Theatre of Sarah Kane: 4.48 Psychosis (1999) and its Stage Adaptation by Deafinitely Theatre (2018)

This paper proposes a reading of Sarah Kane’s 4.48 Psychosis (1999) from a theoretical perspective combining medical humanities, disability, and performance studies (Henderson and Ostrander; Murray); the aim is to expand upon previous scholarship which sought to analyse Kane’s multifarious ways of aestheticising—and questioning—illness and pain (e.g. Guarracino, “Scene”; Simon; Soncini), by reading medical discourse through the notion of ‘complexity’ (Kuppers, Theatre; Siebers). Firstly, I will focus on how complexity comes to the surface through the dramatic text: as Jolene Armstrong has pointed out, the linguistic renderings of a psychotic mind—staged as a medical spectacle—make 4.48 Psychosis a peculiar case study because it is “less like a play than a prose poem intended for interpretative performance” (Armstrong 177). Secondly, I will look at how Deafinitely Theatre attempted to translate the dramatic text into a bilingual performance (i.e. in spoken English and British Sign Language), set in a mixed-reality environment (e.g. the incorporation of video material into the live performance). Ultimately, this dual dimension will hopefully shed new light on the degree of performability of (medical) complexity in 4.48 Psychosis.

Teachers’ Insights on Cultivating Inclusive Education for Students with Complex Support Needs

Background/Context: This qualitative study investigates teachers’ perspectives on providing inclusive services for students with complex support needs. Using a Disability Studies in Education (DSE) framework, the research focuses on understanding the challenges and strategies associated with promoting inclusive education, with attention to issues of social justice and equity. The study draws on the experiences of 11 teachers enrolled in a master’s program, exploring the relationship between teacher agency and its potential to foster inclusive educational environments for students with complex support needs. Purpose/Objective/Research Question/Focus of Study: The primary focus of the study is to explore teachers’ beliefs and practices related to inclusive education for students with complex support needs. The research seeks to answer the following questions: How do teachers navigate the cultural and systemic challenges in schools while promoting inclusive education? What strategies do they use, and how do their beliefs evolve within the context of promoting equity and social justice? Research Design: This study used narrative inquiry and thematic analysis to analyze data from focus group interviews with 11 teachers. A DSE lens guided the analysis, taking into account social justice and equity issues. Thematic analysis yielded two key themes: (1) beliefs and practices of school culture and (2) shifting perspectives within school systems Conclusions/Recommendations: Findings revealed challenges related to ingrained beliefs hindering inclusive practices, emphasizing the need for teacher education programs to prepare teachers to navigate contextual factors within schools and districts and address underlying beliefs about disability while promoting an understanding of and actions toward social justice in education. Overall, complexities were revealed surrounding inclusive education and the importance of teachers’ understanding of their beliefs and agency in promoting inclusive education for students with complex support needs. Implications for future practice and research included the need for systemic change, teacher education addressing ableism, and authentic partnerships between teacher preparation programs and schools.

When in Camelot: Space invaders, neurodiversity and popular culture

This autobiographical reflection builds on Nirmal Puwar’s Space Invaders, where she frames women and people not racialised as white as `out of place’ and `out of space’ in white male spaces and places. For me disabled while Black, her work showed we may extend that conversation into how Critical Autism Studies, Disability Studies, and non/fiction publishing of autistic and otherwise disabled authors have been framed as white-only - those not white are seen as add-ons to the frame. Lack of `Black British’ disabled history, further lead me to write disability back into the history of the officially named yet stigmatising `Educationally Subnormal’ Scandal of the 1970s. It is also not difficult to see how `Educationally Subnormal’ [ESN] morphed into ableist term `Special Educational Needs’ [SEN]. The terminology is different but the underlying implications and inequalities remain the same. Going to school in Northants villages for near to the first fifteen years of my life, and playing cricket in those spaces for much longer, Puwar’s work may also point to the experiences of UK Black and Asian people who live and work in towns and the countryside - and in some cases may be able to trace their family history there going back many decades. My in-progress PhD research on Caribbean Northamptonshire Post-1945 takes that further in conversation with media, while I’ve also felt like a `space invader’ to much Black British media centralised on inner-cities - notably London. I found myself in Black characters appearing in rural period dramas, further to shows like Doctor Who and Merlin. From my rural schooling to disability and my questions of popular culture representations, these are all extended metaphors for the possibilities that we might all be space invaders in one context or another - even around people who look like us. This piece is a needed intervention showing there are a million and one ways to be human - just the mainstream is playing catchup, as per usual.

A Viewpoint on the Ethics of Pseudostuttering Assignments: Guidelines and Best Practices for Their Use.

Pseudostuttering, or the act of voluntarily stuttering or stuttering on purpose, has been both regularly used by clinicians alongside clients in stuttering therapy and taught to students in stuttering courses for decades. However, in recent years, teaching speech-language pathology students how to pseudostutter in stuttering courses has been increasingly questioned by students on grounds that pseudostuttering may be ableist, a disability simulation, and of questionable clinical value. The purpose of this article is to discuss the value and ethics of pseudostuttering assignments as part of graduate clinical education for speech-language pathologists (SLPs). The history of pseudostuttering and the pseudostuttering assignment within speech-language pathology pedagogy, disability studies literature, and community perspectives are reviewed. In so doing, we incorporate views from the broader disability rights community, the stuttering community, and stuttering research and clinical literature. Stuttering literature and community perspectives not only confirm the value of pseudostuttering assignments but also underscore the critical importance of assignment purpose, framing, structure, and scope. Pseudostuttering continues to be a critical clinical skill for SLPs who work with people who stutter, and pseudostuttering assignments are an invaluable learning experience for speech-language pathology graduate students. However, assignments must be designed and implemented according to a specific set of principles and best practices. Assignment design that does not follow these principles and best practices is likely to perpetuate ableist constructs and inadequately prepare students to work with individuals who stutter. Graduate course instructors should educate themselves on these principles and engage with students who express concerns with the assignment.

Intersectionality and embodiment: important issues for disability studies

While viewing an intersectional analysis of inequality as fundamental, we published an opinion in this journal (Watermeyer & Swartz, 2023) pointing to how, in practice, it can be (mis)applied in a manner which underestimates the complexity brought by disability’s infinite diversity in forms of embodiment. This observation in no way implies that disability, or any other marker of identity for that matter, is somehow intrinsically more significant than any other. Instead, it indicates the need for due consideration of the palpable, phenomenological reality of diverse forms of embodiment, which bring unique interactions between body‑minds and contexts. In a critique of our contribution, Ned and colleagues (Ned, Motimele et al., 2024) interpret our position as an attempt to exclusively foreground disability, thereby contributing to epistemic violence and the erasure of the experiences of disabled Global South disability studies scholars of colour. Here, we respond to their critique, showing how we fully support arguments which our interlocutors view us as aiming to refute, while also questioning the voracity of observations regarding our scholarship. We then re‑articulate the essential claim of our original paper.

Examining Axiological and Ethical Assumptions in Physical Activity Intervention Research involving Individuals With Intellectual Impairments: A Review.

Adapted physical activity has been critiqued for its lack of attention to assumptions underlying both research and practice. In response to these critiques, the purpose of this paper was to perform a secondary analysis of a recent systematic literature review to examine the axiological and ethical assumptions of physical activity intervention research involving adults with Down syndrome since 1990 in light of the possibilities of critical disability studies. Findings revealed the dominance of normative movement ideologies and a focus on physical activity performance. Participants were not afforded research roles beyond that of subjects, and there was no evidence of results being communicated to them. In future, we hope scholars will consider the use of emancipatory frameworks where power is situated within the community involved and more inquiry that expands our understanding of the benefits of physical activity for individuals with intellectual impairment that decenters the focus on normative ways of being.

The patient’s voice: a cross-sectional study of physical health and disability in juvenile idiopathic arthritis

BackgroundWith increasing focus on patient-reported outcome measures (PROMs) in chronic rheumatic diseases, we aimed to evaluate the self-reported physical and psychosocial health in children with juvenile idiopathic arthritis (JIA) compared to matched population-based controls. Furthermore, we aimed to study the association of patient- and physician-reported outcome measures in JIA with patient-reported physical disability.MethodsWe used data from a Norwegian JIA cohort study (NorJIA), including clinical characteristics and outcome measures in participants with JIA and sex- and age-matched population-based controls. Self-reported physical and psychosocial health were assessed using the generic Child Health Questionnaire (CHQ). Comparisons between children with JIA and controls were performed by test of proportions for categorical variables and t-test for continuous variables. To evaluate the association of patient- and physician-reported outcome measures with patient-reported physical disability, assessed with the Child Health Assessment Questionnaire (CHAQ) in children with JIA, we used logistic regression to estimate adjusted odds ratio (OR) with 95% confidence interval (CI).ResultsIn total, 221 participants with JIA (59.3% females, median age 12.7 years) and 207 controls with available data were included. In the JIA group, 24.3% scored below the norm for physical health (CHQ PhS < 40) and 8.7% scored below the norm for psychosocial health (CHQ PsS < 40). The corresponding numbers for the control group were 0.5% and 1.9%, respectively. In the JIA group, 57.9% reported physical disability (CHAQ > 0). Several patient-reported outcome measures, such as poor physical health (CHQ PhS < 40), disease-related pain, and the patient’s global assessment of disease impact on wellbeing, were strongly associated with self-reported physical disability (CHAQ > 0), adjusted OR 19.0 (95% CI 5.6, 64.1), 14.1 (95% CI 6.8, 29.2), and 14.0 (95% CI 6.2, 31.6), respectively.Associations were also found for active disease according to Wallace (adjusted OR 36.3, 95% CI 10.3, 128.1), and physician-reported global assessment of disease activity (adjusted OR 6.2, 95% CI 3.1, 12.6).ConclusionsThe strong association between patient- and physician-reported outcome measures and patient-reported physical disability strengthens the importance of including the patient’s voice in a comprehensive evaluation of patient outcome in JIA.Trial registrationClinicalTrials.gov (No: NCT03904459).

Challenging charitable oppression: Social working in supportive housing

Abstract This article provides an autoethnographic analysis of my experiences of administrating and supporting transitional housing programs in Canada. Using anti-colonial, critical race feminist, critical disability studies, and mad studies framings, the article aims to highlight the sharp contrast between social work values and social care practice in housing work. I direct my gaze as a researcher toward myself as a social worker, exploring my experience social working in practice. A creative non-fiction approach to storytelling is used based directly on my experiences social working in supportive housing. These creative non-fiction pieces were analysed to draw out relevant themes. Themes include the discourse of dangerousness, challenging charitable oppression, and reproducing colonial carceral structures. The narratives are followed by analyses which demonstrate harms perpetuated in the neoliberalist social care landscape in Canada. My analysis is based on anti-colonial, critical race feminist, critical disability studies, and mad studies framings. Challenges discussed include interdisciplinary social care practice with those experiencing significant barriers to housing and the ethical implications of working under a charitable organization, along with suggestions for countering dominant ableist, sanist, and Eurocentric practice.

Filmmaking as a Tool for Investigating the Positive Spatial Experiences of Disabled People.

Current studies at the intersection between architecture and disability focus on addressing the immediate needs of disabled individuals and often overlook the potential of built environments to create positive experiences. Additionally, conventional approaches for investigating disabled people's spatial experiences often fail to capture the inherent nuanced sensory and emotional aspects. This paper describes the process of filmmaking and the use of film to explore its contributions and limitations in the understanding on how personal and contextual factors influence individuals' positive spatial experiences. The film Places and Small Pleasures, produced by the Cluster for Spatial Inclusion at the Royal Danish Academy in collaboration with Nossell & Co, serves as a case study for a reflective inquiry. The filmmaking process involved participant interviews, transcript analysis, storyboarding, shooting, editing, and final screening. The analysis of the interviews with four selected participants revealed key spatial attributes and contextual phenomena contributing to their described positive experiences. Four distinct narratives emerged, highlighting the participants' diverse bodily conditions, emotions and feelings in their favorite places. Representations of their experiences through the film incorporated verbal and non-verbal cues, their bodily reactions, and contextual phenomena, offering an immersive sensory richness for the viewers. By capturing the embodied experiences of the four participants within their personal and spatial contexts, the filmmaking process enhanced understanding and empathy, enriching disability studies and fostering academic discourse in this domain through positive stories.

Woven: the intersections of disability and doctoral study, and the lives of students who navigate these intersections

Purpose This paper aims to understand the experiences of disabled doctoral students at one Aotearoa New Zealand University, identifying barriers to accessibility and meaningful participation, and enabling practices. Design/methodology/approach This research was underpinned by the social model of disability and used an explanatory sequential mixed methods approach. A survey comprising closed and freeform questions was distributed to all doctoral students. From the 64 respondents, 12 also took part in an unstructured, narrative interview. Data were analysed using a combination of methods: descriptive statistics, thematic analysis and poetic inquiry. Findings Findings are presented mainly as data poetry. The poems centre on complexities faced by disabled doctoral students, and articulate challenges, enabling practices and possibilities for the future encountered by students in this study. Findings are additionally supported with quotes from narrative interviews, open-ended survey questions and descriptive data analysis. Originality/value The poetic inquiry approach gives voice to the collective experiences of disabled students. The poetic texts bear witness to the intersections of disability, impairment, chronic illness, neurodiversity and doctoral study, and the lives of students who navigate these intersections. These poems voice and seek to be lightning-rods for social change.

Individuals With Extensive Support Needs and Mixed Methods Research: A Systematic Literature Review Across Education Subfields

Mixed methods research (MMR) can support enhanced understanding of complex educational issues, like the inclusion and support of individuals with disabilities in community and school settings. In this systematic review, we explored the extent to which MMR has been used in research exclusively focused on disability across special education (SPED), general education (GE), and disability studies in education (DSE; n = 115 studies). We examined research explicitly considering individuals with extensive support needs (ESNs) in this literature. We highlight the prevalence of MMR exploring topics relevant to individuals with ESN and features of this body of work, including (a) participants in these studies, (b) the presence of theoretical and/or conceptual framing for the research, (c) the goals/aims of the research studies, (d) the purposes for mixing, and (e) the data-generation methods used by the authors. We discuss patterns in the data that reflect differences across subfields, presumptions of competence, and ways ableism shapes research studies. Implications for research and practice to improve inclusive experiences for individuals with ESN are discussed.

Normative implications of postgenomic deterministic narratives: the case study of epigenetic harm.

What do we mean when we talk about epigenetic harm? This paper presents a multidimensional view of epigenetic harm. It is a plea to take a step back from discussions of epigenetic responsibility distributions prevalent in ELSA literature on epigenetics. Instead, it urges researchers to take a closer look at the normative role played by the concept of epigenetic harm. It starts out by showing that the ways in which the object of epigenetic responsibility has already been conceptualized are all related to 'epigenetic harm': something negative that happens in which epigenetic mechanisms play a role, or rather something that needs to be avoided. Epigenetic harm is then characterized as a bridging concept between relatively neutral findings on epigenetics on the one side, and potential ethical and societal implications of those findings, primarily in terms of responsibility ascriptions and distributions, on the other. The paper proposes that a sufficiently nuanced account of epigenetic harm should include at least three dimensions. The dimension of causation alone leads to an overly narrow understanding of harm, and a wrong understanding of this dimension might prompt researchers to support an excessively simplistic epigenetic determinism. It is argued that a multidimensional analysis of epigenetic harm is less vulnerable to this threat and more reflective of the various kinds of harm that may be experienced by the subjects of epigenetic alterations. The paper applies insights from disability studies and feminist philosophy to draw attention to two other dimensions of epigenetic harm, namely lived experiences and relationality. The paper concludes by exploring what a shift towards a multidimensional approach to epigenetic harm might mean for epigenetic research and responsibility ascriptions by formulating some concrete implications.

Disabled Cinematic Technologies or the Crisis of the Image’s Register in Pedro Almodóvar’s Los abrazos rotos (2009)

The human body – and, by extension, the social corpus – has been the main subject of the critical apparatus of Disability Studies. However, I explore here how a ‘disabled technology’ might impact the works of memory and even the constitution of such bodies in Pedro Almodóvar’s film Los abrazos rotos (2009). Although the development of filmmaking technologies has traditionally been thought to serve the enhancement of the image’s readability, theorists such as Jean-Louis Comolli and Lev Manovich have pointed out the way in which these accomplishments reveal the medium’s flawed nature. Thus, this paper analyses the precarity of works of memory as resulting from the coalescence of the protagonist’s sensorial disability and from visual technologies’ impaired rendition of reality. I argue that the notion of disabled technologies not only expresses the crisis of the image’s legibility in the film but, furthermore, it entails a posthuman conception of the body itself as a (disabled?) technology.

Once Upon a Blind Girl: Disability and Fairy Tale in Charles Dickens’s The Cricket on the Hearth

Abstract The paper offers a close reading of Charles Dickens’s Christmas novella, The Cricket on the Hearth: A Fairy Tale of Home (1845), through the lens of fairy tales and disability studies. One of the main characters of the story is Bertha Plummer, a blind doll’s dressmaker. Since her father deceives and hides the truth from her, Bertha is unaware of the real nature of her economic and social circumstances as a disabled, working-class woman. Her disability is crucial to the plot as it is strongly connected to the novella’s themes of domestic infidelity, disguise, and the lack of perspective or understanding. The paper analyzes how Dickens explores these ideas through Bertha’s blindness with the use of fairy tales. It relies on academic sources written about Bertha, fairy tales, as well as disability and Victorian gender roles. (GyK)

Embodying Tourette’s Syndrome in Young Adult Literature

The article foregrounds two protagonists with Tourette Syndrome (TS) from contemporary Young Adult (YA) novels written by authors with TS. Grounded in the interdisciplinary field of cultural disability studies in education (CDSE), each protagonist is analyzed for (1) physical manifestations of TS (external depiction), (2) emotional reactions about having TS (internal depiction), and (3) the response of parents and family members, friends, acquaintances, and strangers (societal depiction). Both main characters navigate a world in which they are viewed as abnormal, frequently working through internalized feelings of freakery as they struggle to become more self-accepting during their adolescent years. Such depictions “engage with disability as an isolating, hurtful, and joyful experience” (Bolt 11), allowing for the complexities, tensions, contradictions, and general messiness of embodying TS. These depictions suggest that the authors seek to provide readers with an empathetic understanding of TS, while allowing the simultaneous contemplation of ways in which the embodiment of TS informs us about our culture.

Care as survival and resistance for precarious lives

AbstractWidespread economic and social precarity has made care essential to sustain life while simultaneously unremarkable due to its ubiquity. Failure to attend to care inadvertently accepts associated inequalities and ignores the potential for resistance. I explore in this paper the potential for anthropological investigations of care to overturn assumptions of care as ordinary amid precarity. Drawing on transdisciplinary anthropological, feminist, and disability studies scholarship on care and my own ethnographic work with people with disabilities and their family caregivers in Appalachian Kentucky, I argue care is best characterized as an expansive conceptual frame to understand and contest conditions of protracted precarity. Moving beyond assumptions of care and caregiving as ordinary, I theorize care as a relational, moral, and practical act; situate care within the context of neoliberalism, inequality, and repression; and recognize the persistence of resistance enacted through care practices to center efforts for justice. Care as a focus of feminist scholarship and practice must move beyond oppression. Care is an everyday means for interdependent resistance amid the conditions of precarity, offering vital recognition of personhood and worth for precarious lives. Caring labor sustains life when industrial capitalism cannot. Care persists as a way to survive and thrive amid injustice.

When the ‘inclusive turn’ fuels the entrepreneurial city: Critical perspectives from Singapore

The rise of the notion of ‘inclusion’ in urban planning, seen in phrases like inclusive city, calls for a critical analysis of its evolving meaning and its spatial, social and political implications. Paradoxically, the meaning of urban inclusion has narrowed such that it now primarily refers to accessibility for people with disabilities. At the intersection of urban studies and critical disability studies, our article investigates the conceptions, criteria and modes of production underlying the implementation of urban inclusion in Singapore's ‘Enabling Village’, a purportedly inclusive space opened in 2015. We use a mixed‐methods approach, analysing official narratives and conducting site visits to understand the site as both an appropriated and a branded space. We show that, in Singapore, the inclusion agenda interacts with the city‐state's distinctive approach to planning and governance, where social issues are ‘engineered’ and give rise to replicable operational models. Our hypothesis is that implementing the inclusive city through the production and promotion of ‘inclusive’ urban projects such as the Enabling Village fuels the expansion of Singapore as a state‐led ‘entrepreneurial city’ (Harvey, Geografiska Annaler. Series B, Human Geography 1989; 71(1):3–17). In particular, operationalising ‘urban inclusion’ in this way allows for the reinvention of Singapore as a global urban model.