Disability Studies Research Articles

Wretched Refuse

The article moves beyond some of the more recognizable intersections of disability and camp—the flamboyant irreverence of disabled performers—to ask how a crip sensibility can modify our very definition and epistemologies of the camp aesthetic. Leveraging the definitional kinship between bodies considered disposable and objects slated for discard, a new cripistemology of the camp aesthetic redefines camp through relations of care—those practices through which we nurture that which is beyond recovery and past the point of repair. Building on but departing from important work in disability studies that emphasizes crip theatricality and camp spectacle, the article explores the different affects that circulate through the intimacies and animacies of camp objecthood.

Cripistemologies of Drug Use Against Transinstitutional Carceral Ableism

Across Canada, thousands of drug users are dying from a toxic illicit drug supply resulting from oppressive drug policies and regulations that reinforce the prohibition and criminalization of drug use and the pathologization and rehabilitation of drug users. Bringing together critical drug studies and critical disability studies, the article contributes cripistemologies of drug use to unpack some of the ways transinstitutional carceral ableism conjoins control strategies of punishment-therapy-abandonment to unite both medical and carceral approaches to disability and drug use that have debilitating and deadly consequences. Against transinstitutional carceral ableism, the article mobilizes cripistemologies of drug use to trouble and reject the disposability of non-rehabilitated drug users central to medical and carceral approaches and instead favour consensual and pleasurable drug use via care practices grounded in interdependence, mutual aid, and solidarity.

Black Crip Superpowers

This article contains some language that readers may find offensive. Black people have never been human. White heteropatriarchal paradigms in the United States depend upon the abjection of blackness, excluding us from the realm of human identities. It is this exclusion that generates the problem of unintelligibility; this lack of grammar in turn renders black bodies invisible and more vulnerable to violence. The article attends to the black disabled body as a source of new grammars , short-circuiting the separation of blackness from other modes of difference. These new grammars, or what the article articulates as crip superpowers , theorize new ways of thinking, knowing, and being beyond abjection. By building on the labor of black feminist, crip/queer, and disability scholars, this intervention into disability studies analyzes how marginalized bodies engage with issues of erasure and disability within the black community. The article offers a transtemporal reading of Essex Hemphill’s Ceremonies (1992) and Danez Smith’s Don’t Call Us Dead (2017) to examine how black disabled subjects have developed these new grammars across time and space. Through this affective connection between the past and our contemporary moment, we can, as it were, go home ; we can imagine, that is, alternative worlds, where we can be whole and free.

Critical Disability Studies at American Studies Association, 3–6 November 2022, Hilton New Orleans Riverside, New Orleans

Critical Disability Studies at American Studies Association, 3–6 November 2022, Hilton New Orleans Riverside, New Orleans

Strong and Weak Theories of Capacity: Eve Kosofsky Sedgwick, Disability, and Contemporary Capacity Theorizing

Abstract This article puts forward two ways of understanding capacity: strong and weak theories. The strong theory of capacity self-evidently connects capacity with ideal humanity or pedestalizes it as an analytic concept, while the weak theory of capacity allows space for interpretations about life unfolding without murmurings about capacity. By considering capacity in a way that distinguishes these two theories, the article contributes to contemporary thinking in which capacity has emerged as a key concept. My perspective draws on Eve Kosofsky Sedgwick’s ideas about strong and weak theories and is further influenced by methodological issues raised by disability studies scholars. I first recall Sedgwick’s ideas about strong theories, after which I focus on how capacity assumptions operate in Silvan Tomkins’ work, which has had an important impact on Sedgwick. I then identify two recent contributions in disability studies in the area of capacity-themed theorizing. I interrogate the ways in which these contributions share the habits of the strong theory and how they escape its problematic tendencies. Toward the end of the article, I outline how the weak theory of capacity could contribute new perspectives to the contemporary discussion.

Aging with and into disability: An introductory review with clarification of basic terms

Aging involves the progression of becoming older, encompassing physical, mental, and social changes that take place in individuals over time. The longer lifespan and decreasing fertility rates have brought attention to the difficulties experienced by elderly people with disabilities. A survey method was used to collect titles of articles from different electronic databases, both online and offline, in national and international journals, as well as chapters or full-length books in the fields of gerontology and disability studies. The resulting list of 95 entries up to March 2024 was examined using the SANRA guidelines (Scale for the Assessment of Narrative Review Articles: Baethge, Goldbeck-Wood, & Mertens, 2019), aided by a flow chart and harvest plot to visually present the findings. The main focus was on clarifying fundamental terms related to aging with and into disability, successful aging, atypical aging, psychological aging, premature aging, and others. This type of clarification, which is not yet available from a single source, is considered necessary for aspiring researchers in this field to choose specific topics or themes for further study. The findings provide valuable insights for future considerations and opportunities for additional research.

Murray, S. (2020). Disability and the posthuman: Bodies, technology, and cultural futures. Liverpool University Press

In Disability and the Posthuman: Bodies, Technology, and Cultural Futures (2020), Stuart F. Murray presents an insightful exploration of the intersections of posthumanism and disability studies and offers a compelling framework for understanding how these disciplines can mutually inform and enrich one another. Embedded firmly within critical disability studies, Murray explores the productive potentials of an encounter between posthumanism and disability studies. His analysis mainly focuses on the disruptive nature of disability and its implications for envisaging a posthumanist future. While integrating posthumanism with disability studies is not unprecedented, Murray distinguishes his work through a unique emphasis on cultural representations, contributing a fresh perspective to the literature.

Beyond omission: analysing the erasure of disability and inclusion in the developmentally appropriate practices

ABSTRACT The 4th edition of the National Association for the Education of Young Children’s (NAEYC) guidelines for developmentally appropriate practice (DAP) had an opportunity to provide the field an inclusive blueprint. While there was an attempt in this edition to respond to decades of critiques (e.g. Bloch [1992]. “Critical Perspectives on the Historical Relationship Between Child Development and Early Childhood Education Research.” In Reconceptualizing the Early Childhood Curriculum: Beginning the Dialogue, edited by S. Kessler, and E. B. Swadener, 3–20. New York, NY: Teachers College Press.; Cannella [1997]. Deconstructing Early Childhood Education: Social Justice and Revolution. New York, NY: Peter Lang.; Escayg [2019]. “Who’s got the Power?”: A Critical Examination of the Anti-Bias Curriculum.” International Journal of Child Care and Education Policy 13 (1): 1–18. https://doi.org/10.1186/s40723-019-0062-9.; Langford [2010]. “Critiquing Child-Centered Pedagogy to Bring Children and Early Childhood Educators Into the Center of a Democratic Pedagogy.” Contemporary Issues in Early Childhood 11 (1): 113–127. https://doi.org/10.2304/ciec.2010.11.1.113.; Pérez and Saavedra [2017]. “A Call for Onto-Epistemological Diversity in Early Childhood Education and Care: Centering Global South Conceptualizations of Childhood/s.” Review of Research in Education 41 (1): 1–29. https://doi.org/10.3102/0091732X16688621.; Souto-Manning and Rabadi-Raol [2018]. “(Re)Centering Quality in Early Childhood Education: Toward Intersectional Justice for Minoritized Children.” Review of Research in Education 42 (1): 203–225. https://doi.org/10.3102/0091732X187595.), the new edition continues to centre dominant developmental approaches where adults hyperfocus on children’s differences or individual characteristics rather than on changing educational structures and practices that promote inequity (Ferri and Bacon [2011]. “Beyond Inclusion: Disability Studies in Early Childhood Teacher Education.”). The revised guidelines do not go far enough to address inequity and to give teachers and programmes tools for addressing injustice for all young children. This manuscript builds on previous critiques of DAP by explicitly addressing the exclusion of disabled children from the guidelines.

Theories and practices of disability from the Global South: a critical anthropological perspective

“Critical disability studies” (CDS) is an interdisciplinary field of research that examines social, political, economic, racial, gendered and historical constructions of bodily non-normativity across different geopolitical areas and scales. Despite its diverse and multiple contributions and objectives, current research in critical disability studies has been described as mainly focusing on disability issues in the Global North and as having universalizing tendencies. In this context, intersubjective perspectives and empirical data offered by ethnographic works in medical and disability anthropology and related disciplines have been either in accord or tension with the broader field of CDS. On the one hand, this review article illustrates the many ways anthropologists have adopted various research perspectives to explore bodily non-normativity outside settings in the Global North. On the other, it shows the importance of research by anthropologists working on topics related to disability, as well as their recent fruitful collaborations with CDS scholars and approaches. By exploring these epistemological and empirical entanglements, this paper concludes that deeper engagements between CDS and anthropology, as well as a more thorough focus on the ethnographic analysis of bodily non-normativity, can open new creative routes for the analysis of disability in various world contexts.

A Material Culture of Medieval Disability: Contextualising Norwegian Votive Offerings

In this paper, the potential for material culture studies within the history of disability is explored through a study of preserved anatomical votives from medieval Norway left in connection with miraculous healing practices. The Norwegian votives, which include wooden body parts of hands, arms, finger, feet and legs as well as mobility aids, are here related to the lived experience of the physically impaired. Anatomical votives have been interpreted as meaningful depictions of how an individual conceptualised the body part in question, which they sought healing for. Through a posthumanist approach, anatomical votives can, however, not only be seen as solely representational of a body part but as material extensions of the body. Preserved mobility aids, here identified as hand-trestles and a knee-brace, provide insight into the availability of aids for individuals with lower limb impairments in the medieval North. The study of the material culture of disability can elucidate cultural notions of disability in relation to physical impairment. While written miracle accounts have been identified as important sources for the study of medieval disability, their associated material culture is here presented as important data for the embodied experience of the physically impaired in medieval Norway.

Hope

Duchenne muscular dystrophy (DMD) is a life-shortening genetic condition involving progressive muscular wasting for which there is no hope of recovery at present. The lives of people with DMD, cherished by their families, are systematically marginalised and undervalued by healthcare bureaucracies while enrolment in clinical trials of new treatments offers possibilities of longer-term biomedical solutions. How is hope preserved under such circumstances and what activities can promote a full and meaningful life for those with DMD Ethnographic research within the DMD community in Aotearoa New Zealand provided a basis for addressing these questions and for understanding different concepts of hope and social suffering, the value of life in DMD and disability studies, and how these are shaped by regimes of governmentality.

Study finds birders with disabilities face accessibility obstacles

A study conducted by Virginia Tech researchers sheds light on the challenges faced by birders (https://bit.ly/3xej5Id). The study concluded that one in three birders encounters accessibility obstacles during birding activities. Published in the journal Human Dimensions and Wildlife, the research combines the areas of disability studies and wildlife recreation.

Relaxed performances: supporting aural diversity and neurodiversity among classical concert audiences in the United Kingdom

ABSTRACT Current discourse at the intersection between sound studies and disability studies has highlighted the phonocentric nature of conventional understandings of listening – especially in relation to engagement with classical music performance. The perpetuation of ableist notions of “normal” and “expert” listening risk overlooking multimodal and embodied listening practices of the kind advocated by aurally-diverse and neurodiverse concert audiences. In this article, we evaluate the extent to which Relaxed Performances (RPs) may offer opportunities for such diverse ways of listening, through surveying the existing provision of RPs in the United Kingdom and reviewing three examples of performances by the Graeæ Theatre Company, the English National Opera, and the BBC Proms. We conclude that further work needs to be undertaken for emergent RP practices to be codified and become widespread, but highlight the importance of this work in making classical music performance more accessible and beneficial for people who experience differences in sensory processing.

Medical humanities and disability studies: In/disciplines. Series: Critical interventions in the medical and health humanities. By S.Murray, London: Bloomsbury Academic. 2023. pp. 134. £45.00 (hbk); £14.99 (pbk); £13.49 (ebk). ISBN: 978‐1‐3501‐7217‐3

Medical humanities and disability studies: In/disciplines. <i>Series: Critical interventions in the medical and health humanities</i>. By S.Murray, London: Bloomsbury Academic. 2023. pp. 134. £45.00 (hbk); £14.99 (pbk); £13.49 (ebk). ISBN: 978‐1‐3501‐7217‐3

Why Disability Is Technologically Mediated?

AbstractThe social model of disability is predicated upon the dichotomy of disability and impairment, which proves vulnerable to objections. Phenomenological approaches to disability in particular found this sharp distinction contrived, and accordingly implausible. Moreover, the social model ignores lived body of individuals and the inside-out perspective on disability. A phenomenological approach thus places the emphasis on the embodied nature of being-in-the-world. Yet, when it comes to the role of technology in disabled people’s life, and in particular assistive technologies, it does not do justice to the role they play, and as a result, technology is treated predominantly as instrumental. In this article, I suggest taking a more systematic approach to technology in disability studies and bringing its role into an interrogation. To that purpose, I will draw from the postphenomenology movement to show how technology may actively mediate individuals’ life and, perhaps more importantly, how disability is technologically mediated.

Interdependency, alternative forms of mathematical agency and joy as challenges to ableist narratives about the learning and teaching of mathematics

AbstractCatering for the mathematical needs of disabled learners equitably and productively requires the anti-ableist preparation and professional development of teachers. In CAPTeaM (Challenging Ableist Perspectives on the Teaching of Mathematics), we design tasks that emulate inclusion-related challenges from the mathematics classroom, and we engage teachers with these tasks in workshop settings. In this paper, we focus on evidence from one type of task in which participants engage in small groups with solving a mathematical problem while at least one of them is temporarily and artificially deprived of access to a sensory field or familiar channel of communication. In this paper, we focus on evidence of emerging resignification – discursive and affective shifts in the participating teachers’ sense-making about what makes the construction of mathematical meaning possible and valuably different – as they work on the tasks. By linking Vygotsky’s vision about the educational changes required to empower and include disabled learners with more contemporary ideas from embodied cognition and disability studies, our analyses show how engagement with the tasks affects participants’ realisation and appreciation of interdependencies between learners, teacher, resources, and emotions, highlights alternative forms of mathematical agency and gives opportunities to turn initial sense of impasse and despair into joy.

‘There is Beauty in the Way that I Think.’ Exploring Autistic Life Narrative in Cultural Texts of Hannah Gadsby

ABSTRACT Representations of autism in popular culture usually rely on stereotypes about autistic people rooted in clinical discourse of pathology, reproducing gendered, racialized and classed images of white, cis male exceptionalism. The dominant circulating narratives often ignore lived autistic experience and position autism either as a spectacle or as the unknowable other. Personal narrative allows autistic people to ‘story’ autism in its many different forms and create a space of critical interrogation. This article examines two cultural texts of Tasmanian comedian and author Hannah Gadsby, who addresses their late-life diagnosis of autism in their stand-up comedy show Douglas and their memoir Ten Steps to Nanette. By drawing on queer and feminist disability studies, critical autism studies and theories of life writing, this article analyses how Gadsby employs autistic life narrative as a form of ‘diversity work’ [Ahmed, Sara. 2017. Living a Feminist Life. Durham: Duke University Press] and tells their story in its tense relation to social and medical notions of normality as well as medical discourse of diagnosis. By doing so, this article argues that Gadsby’s use of life narrative contributes to a more diverse representation of autistic lives and offers a critical interrogation of what is considered social normality.

How do research participants with age-related vision loss talk about their experiences? A secondary discourse analysis of published qualitative extracts

Abstract Age-related macular degeneration (AMD) is a chronic, progressive eye condition that can affect individuals in later life and lead to loss of central visual function. In this analysis, we aimed to explore the discursive landscape of talk about AMD, drawing on extracts published in peer-reviewed qualitative studies on AMD. Drawing on procedures of qualitative meta-synthesis, we compiled a corpus of raw data extracts from 25 qualitative studies on AMD published in English, largely carried out in high-income countries. Extracts were analysed to identify dominant discourses and key interpretative repertoires (such as recurring metaphors, tropes and figures of speech). We adopted a Foucauldian discourse analytic approach, to consider the implications of dominant discourses, and their associated subject positions, for the subjective experience of living with AMD. Our analysis identified five distinct ways in which AMD was constructed in research participants' talk about experiences of AMD. They included: AMD as a mysterious affliction, linked to biological ageing; AMD as a total loss of independence; AMD as grievous loss; AMD as a condition to be stoically accepted; and – to a more limited extent – AMD as an opportunity for discovery. Drawing on theory from critical disability studies and gerontology, we suggest that the constructions identified are underpinned by broader societal discourses which construct ageing and disability in largely negative, medicalised and individualistic terms. Taking up subject positions within such discourses may compound feelings of isolation, hopelessness and powerlessness. We suggest there may be value in exploring talk about experiences of living with AMD within a broader range of everyday social, relational and environmental contexts.

Grandparenting children with disabilities: An introductory review with focus on theories and measurements

The research on the experiences of grandparents involved in caring for children with disabilities is a neglected area in empirical studies. Using a survey design, titles of articles from national and international journals, books, and databases were collected in the fields of family science, gerontology, and disability studies. Out of 165 references available to the author until December 2023, 82 entries were reviewed by analyzing aspects such as format, timelines, journal titles, and themes that resulted in the identification of 20 relevant research articles primarly focusing on theories and measuremen. Grandparents were found to face unique challenges such as emotional stress, isolation, lack of peer support, the demanding nature of caregiving, and concerns about the future of their grandchildren with disabilities. Financial burdens for medical expenses, therapies, and special education services were other areas of concern. Issues like intergenerational conflicts, language barriers in multicultural settings, transportation difficulties, and toxic grandparenting are also highlighted. The study revealed a scarcity of information on grandparenting theories and measurement tools across different cultures and time periods. It calls for researchers to reassess, revise, and update existing theories, paradigms, models, tools, and measurements to adapt to the evolving landscape of caregiving for children with disabilities in the digital era.

Enacting Reciprocity and Solidarity: Critical Access as Methodology

ABSTRACT Drawing on the growing field of critical access studies, this article positions critical access as a research methodology that aligns with feminist praxis and disability politics. We begin by mapping our central concept in relation to literature on feminist disability studies, crip methodology, feminist methodology, and critical access. We then demonstrate critical access methodology in practice drawing on our collective research programs. Our first example comes from a workshop exploring citizen photojournalism as part of Stretching Our Stories and takes up non-linear and unverifiable journalistic accounts by disabled people. We follow this with an example from Practicing the Social, a three-day online artistic research and knowledge mobilisation event, which foregrounds the complexity of structuring pace and time. We conclude by suggesting that approaching critical access as methodology makes it possible to embrace moments of friction. Throughout this article, we argue that access, when taken up critically, becomes a transformative process that can contribute to the development of a feminist research methodology that supports research directed towards crip-feminist futurities.