Disability Studies Research Research Articles

“No-one’s contribution is more valid than another’s”: Committing to inclusive democratic methodologies

In this article, we explore the power and potential of democratic research methodologies in and beyond Critical Disability Studies research contexts. We centre two funded co-produced, participatory and arts-informed projects that have been co-designed and co-led with disabled young people and people living with chronic (respiratory) illness. We critically explore some key processes, which we suggest can mitigate forms of disablism and ableism inherent to research processes which traditionally make them undemocratic spaces of inequity. Our paper offers original analyses into the very notion of democratic research which have significant applications; driven as they are by the presence of disability. These include (i) Crip time - the recognition of (disabled) people’s need for flexible forms of time; (ii) virtual methods and intimacies as routes to equity in research leadership; and (iii) flexible and slow/er research approaches. We also draw upon the ways in which the Covid-19 global pandemic has reshaped methodologies and approaches to inquiry. We advocate that, as research communities, we must come together to keep hold of these new inclusive and hybridised ways of relating and engaging in what are problematically framed as “post-Covid” times. We conclude by emphasising the importance of always committing to disrupting power dynamics through centring flexibility, accessibility and inclusivity across our inquiry with marginalised others.

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.

New Narratives of Madness in Popular US Television

Abstract This article examines a 2010s wave of US primetime television shows centered around the experiences of mad or distressed characters. Drawing upon research in critical disability and mad studies, the article identifies positive trends in US media surrounding mental disability, distress, and medication. Although the portrayals of madness in the shows discussed are complex and not without issue, this article argues that these series make space for alternative narratives of madness in popular culture that do not rely wholly on stereotypes of crime, genius, or violence.

Mundanity, fascination and threat: Interrogating responses to publicly engaged research in toilet, trans and disability studies amid a ‘culture war’

Toilets are political spaces: inadequate toilet access means limited access to wider space and community. Between 2015 and 2018 I led a series of interdisciplinary research projects collectively known as Around the Toilet ( http://aroundthetoilet.com ), which centred the experiences of trans, queer and disabled people to explore what makes a safe and accessible toilet space. The research sought to consolidate commitments to feminist, queer, trans and disability politics. In this article, I interrogate the repercussions of doing work at these political intersections by focusing not so much on the research findings themselves, but on the ways in which the project has been responded to within a context which is anti-expert, anti-‘woke’ and one of perceived scarcity. I reflect on my experiences as a trans person, leading a public-facing research project which centres trans lives, within a context of increasing trans hostility. I will show how Around the Toilet has at once been understood as too mundane (a waste of taxpayers’ money; a humorous thing to be researching); a fascination (a good journalistic ‘hook’; focus on particular aspects of the work, whilst ignoring others); and a threat to social order. I argue that – during a time where ‘impact’ is valued and academics are expected to be ‘public-facing’ – universities need to recognise harms that can come from this, and resource the labour that it takes to mitigate these harms (if the risk is deemed worth taking). I also outline ways in which universities and those with varying degrees of institutional power can help to make the academy a more sustainable place to work for those targeted in current culture wars.

‘Doing’ normativity in disability studies: soft suggestions towards an empirical ethics of disability

As a field concerned with improving the lives of disabled people, disability studies has always been a normative field of inquiry. For this reason, Vehmas and Watson (2016) urge disability scholars to engage with normativity more explicitly. This article builds on Vehmas and Watson to consider how disability scholars can ‘do’ normativity so as to arrive at normative insights attuned to the lives of disabled people themselves. The article has two aims. The first is to examine how normativity has been ‘done’ in disability studies research up to the present. Here, the article locates three problems that hinder the pursuit of normative insights that have sufficient bearing on disability experiences. The second is to make some suggestions for more reflexively ‘doing’ normativity in disability studies in a way that does yield insights of this kind. For this latter goal, the article draws on ideas from the field of empirical ethics.

Praxis-Oriented Research Toward a Liberatory Disability Politics: A Contemplative Inquiry Approach

Knowledge extraction and the absence of reciprocity between scholars and grassroots practitioners in mainstream disability research are topics of concern for scholar-activists committed to disability justice in cultural and social studies research. Critical methodologies such as praxis-oriented research and scholar-activism in disability studies have sought to decenter Euro-American notions of expertise and nondisabled expert knowledge by centering disabled grassroots knowledge and leadership in all aspects of the disability experience. Overall, the literature demonstrates that emancipatory methods such as scholar-activism and praxis-oriented research have had a liberatory effect on disability studies inquiry. It also suggests that nondisabled researchers in other areas have yet to critically examine their role in perpetuating systemic ableism in their research practices. This article builds upon and extends the existing literature by considering disability studies scholars’ methodological interventions in traditionally dominant fields such as anthropology and policy studies. To keep with a praxis-oriented approach to research, the article uses a contemplative inquiry approach to discuss these interventions. Concluding remarks discuss the political significance of praxis-oriented research and its role in subverting unbalanced power dynamics between academic researchers and disabled grassroots practitioners, thus enabling a move toward a liberatory disability politics.

Negotiating the Insider/Outsider Researcher Position within Qualitative Disability Studies Research

The subjectivity of qualitative researchers can be a contribution to qualitative research which at the same time requires commitment to on-going critical reflexivity regarding one’s positionality. More specifically, we address how to navigate the possibility that researcher subjectivity can culminate in role-confusion when the researcher is highly familiar with the research setting or research participants, when positioned as an “insider.” We do this by adopting a critical paradigm approach that investigates the efficacy of “unlearning” as a strategy for challenging one’s assumptions as a researcher, particularly those assumptions that challenge the co-construction of knowledge that extends from research presuppositions. Drawing upon theoretical and methodological literature, we argue that intersubjective reflection is crucial to the process of unlearning. By critically reflecting on subjectivity, it becomes possible to deconstruct our research approach and its underlying assumptions, as well as our research findings. In turn, this creates space to unpack our role in how these approaches, assumptions, and findings are formulated, as well as space to challenge and reformulate these based on dialogue with participants. Through critical reflexivity addressing subjectivity and positionality in the context of research relations, researchers are challenged to consider how their insider knowledge, based on their individual experiences and personal meanings, can impinge on the research process.

Ableist Rhetoric: How We Know, Value, and See Disability by James L. Cherney

Reviewed by: Ableist Rhetoric: How We Know, Value, and See Disability by James L. Cherney Emily Krebs Ableist Rhetoric: How We Know, Value, and See Disability. By James L. Cherney. University Park, PA: Penn State University Press, 2019; pp. 200, $101.95 hardcover; $33.95 paper. With the widespread normalization of COVID-19, many of the accessibilities afforded to high-risk groups at the start of the pandemic are slipping away. High-risk groups are facing the brutal realities of ableist rhetoric undergirding claims that it’s “encouraging” that the majority of people dying from COVID are “unwell to begin with.”1 Eugenic logics are hidden beneath rhetoric that seems mundane, perhaps even encouraging to nondisabled groups who call for “returning to normal.”2 As much as I empathize with those seeking relief from isolation, anxiety, and grief, I must also ask: To whose normal are we returning? Who is going back? And who will be left behind? It is with this context that I offer this review of James (“Jim”) L. Cherney’s book Ableist Rhetoric: How We Know, Value, and See Disability.3 This text serves as a jumping off point for rhetorical scholars because it offers a unique turn for disability studies, focusing on rhetorics ableism instead of disability itself. Cherney offers this lens not to replace disability studies research but to complement it with a focus on the basic mechanisms and logics of discrimination that de/value all humans. He identifies his work as an examination of ideology and rhetoric, meaning that he focuses on the meanings attached to disability rather than the material or scientific status of disablement. This approach is powerful because, while few people today openly mock disability, many regularly communicate using ableist rhetorics and logics. At the core of this book, Cherney argues that “contemporary culture accepts ableist rhetoric, not ableism per se.”4 He explains that while our current culture discourages blatant discrimination and bigotry, we also distance ourselves from association with this behavior in a way that erases our complicity in more covert forms of oppression. We do not consider ourselves fundamentally ableist, nor [End Page 227] do we identify rhetorics of ableism as impacting our systems of knowledge or values. However, we still routinely rely on logics that frame disability as “inherently undesirable and diminishing.”5 Cherney argues that this feels like a reasonable perspective because of the ubiquity of ableist warrants; they have become “common sense.”6 This is problematic because, in Cherney’s words, “When ableist warrants remain accepted ways of thinking in the culture, they limit the capacity of antidiscrimination measures.”7 In response, Cherney calls upon rhetorical scholars to attend to that which “goes without saying” in order to expose those allegedly pure logics as rhetoric, and thus, open space to identify and move away from ableist culture.8 Such work is particularly powerful given current discourses around COVID-19, high-risk populations, and resistance to precaution mandates. Thus, Ableist Rhetoric has the potential to serve a wide range of rhetorical projects in health communication and critical cultural studies in addition to more traditional disability studies work. Attending to ableist warrants is a powerful tool for disability justice because these rhetorics operate regardless of a disabled person’s presence or absence. As Cherney explains, attending to ableist warrants therefore allows a broader reach of disability studies—beyond the presence of disabled people/characters—to attend to the violences of anti-disability logics. Addressing ableist rhetoric in spaces where disability itself is not explicit is crucial because it attends to “prior questions”9 and requires scholars to “take a step back from procedural questions typically posed . . . to inquire about what makes certain meanings possible in the first place.”10 This means rhetoricians can address larger phenomenological issues about the nature of ableism and its relationship with other forms of oppression to catch ableism at it roots and reveal undercurrents of ableism that too often run unchecked. To open the project of investigating ableist rhetoric, Cherney addresses three primary rhetorical warrants in this book: (1) deviance is evil, (2) normal is natural, and (3) body is able. He offers case studies for each, which stem from his...

Intersectionality Within Critical Autism Studies: A Narrative Review.

The aim of this narrative review was to examine intersectionality within critical autism studies. A growing body of evidence has demonstrated the importance of intersectional frameworks in highlighting the diverse experiences of marginalized communities. Many disability studies researchers investigated intersectionality to elucidate the impact of race, gender, sexuality, class, and other constructs on disability identification. Within critical autism studies, a field that emerged to challenge the deficit-laden, pathologizing autism discourses favored by the medical community, intersectionality has started to become an integral component of the literature. This review highlights intersectional frameworks utilized to explore autism in both academic and nonacademic contexts, to provide a foundation for future study. Upon analysis, we found overarching themes regarding the explicit, implicit, and descriptive approaches to intersectionality, racial and gender biases within critical autism studies, and the multidisciplinary nature of intersectionality and critical autism studies. We finish the review with recommendations for how to more fully address the experiences of all autistic people-particularly of racial, gender, and sexual minority individuals-in future study. Our recommendations include utilizing intersectionality as an analytical lens for describing previously overlooked phenomena and questioning central tenets of methodology and processes, including developing research questions, analyzing data, and writing results.

Constructing Ableism

This essay builds upon research in disability studies through the extension of Garland-Thomson’s figure of the normate. I argue that biopower, through the disciplinary normalization of individual bodies and the biopolitics of populations, in the nineteenth-century United States produced the normate citizen as a white, able-bodied man. The normate citizen developed with the new political technology of power that emerged with the transition from sovereign power to biopower. I focus on the disciplinary normalization of bodies and the role of industrial capitalism in the construction of able-bodied norms. I argue that the medical model of disability is produced through a dual process of incorporation: the production of corporeal individuals and the localization of illness in the body.

Nothing About Us Without Us - Towards Genuine Inclusion of Disabled Scientists and Science Students Post Pandemic.

Scientists and students with disabilities have been severely affected by the COVID‐19 pandemic, and this must be urgently addressed to avoid further entrenching existing inequalities. The need for rapid decision‐making, often by senior colleagues without lived experience of disabilities, can lead to policies which discriminate against scientists with disabilities.This article reflects on disability declaration statistics and research in critical disability studies and social science to explore the challenges experienced by disabled scientists before and during the COVID‐19 pandemic and highlights recommendations and examples of good practice to adopt in order to challenge ableism in STEM communities and workplaces. It is vital that disabled staff and students are fully involved in decision making. This is particularly important as we continue to respond to the challenges and opportunities associated with the ongoing COVID‐19 pandemic and plan for a post‐COVID‐19 future.This time of great change can be used as an opportunity to listen, learn, and improve working conditions and access for scientists with disabilities, and by doing so, for everyone.

Who Gets Cured? COVID-19 and Developing a Critical Medical Sociology and Anthropology of Cure.

In this opinion piece, I argue that a sociology and anthropology of cure is accelerated by various features of the scientific and social responses to the COVID-19 pandemic. I illustrate how the pandemic has made the general public rethink popular notions of “cure,” foregrounded ethical dilemmas and inequalities in who has access to “cures” and also revealed deep uncertainties correlated to a future where there is no such thing as cure anymore. Such developments in the pandemic response illustrate the need for a critical interdisciplinary agenda to interrogate the social, ethical, cultural, economic, political and technological innovations of cures nationally and internationally. The race for a vaccine for the SARS-CoV-2 virus that causes COVID-19 illustrated the urgency to find a cure during a pandemic but also deep anxieties, as the general public realizes they have to leave behind absolutes of “cure” and deal with uncertainties of who now gets cured? In medical sociological and anthropological literature, absolutes of cure have long been criticized in research, amongst others, focusing on changing ideas of: inequalities in who becomes incurable or curable, for example, during the HIV/AIDS epidemic (Schoepf, 2001; Nguyen, 2010), inclusion in clinical trials (Petryna, 2009), or due to genomic advancements (Inhorn and Wentzell, 2012); environmental, lifestyle and embodied (epigenetic) risks which have reconceptualised understandings of nature and nurture (Kavanagh and Broom, 1998; Lock, 2013; Gale et al., 2016), as “situated biologies” mean rethinking notion of bounded bodies in favor of how biology is affected by environment (Niewohner and Lock, 2018); expectations and hopes of new biotechnologies and artificial intelligence that bring to the fore the way in which scientific advancements can politically shape subjectivities, temporality, emotions and care (Brown and Michael, 2003; Brown, 2005; van der Niet and Bleakley, 2020); “promissory futures” of biomedical and scientific innovations, such as in the field of regenerative medicine, become correlated to neoliberal policy-making and economic investments (Brown et al., 2006; Selin, 2008; Morrison, 2012); novelty, for instance in epigenetics, becomes socially constructed (Pickersgill, 2020); clinical forecasting is relationally imbedded and negotiated in clinical practices (Timmermans and Stivers, 2018); and dealing with uncertainty of conditions with no cure, where instead experiments become perilous options for patients (Fox, 2020). The above is just a sliver of the breadth and depth of knowledge built on a continuum of cures, but the very notion itself of “a cure” and how the concept is changing, is never explicitly questioned as such. Yet, as illustrated, just as comprehension of COVID-19 is marked by social understandings of inequalities in infection, environment, prevention and intervention (Lupton and Willis, 2020; Trout and Kleinman, 2020), knowledge of cure is socially and culturally informed too. Public health pandemic responses to COVID-19 have focused on scaling up disease prevention and control efforts, public health information, laboratory systems and development of private and public partnerships to develop diagnostics, therapies, antiretrovirals and vaccines. Furthermore, critical social commentaries have been noted in terms of ethics of access to: care; life-saving equipment like ventilators; therapies (e.g., remdesivir); vaccines; as well as debunking the idea of recovery and immunity. Presently, with hopeful vaccines on the horizon (Horton, 2020), a “critical bioethics of cure” is developing, informed by differing ethical norms and values in society, associated to who gets access to vaccines and how they will be allocated (see, Emanuel et al., 2020). For example, in the United Kingdom (UK), the disability community has warned of overt discrimination in lack of ethical inclusion in pandemic preparedness and response (Armitage and Nellums, 2020), “ableism” (Campbell, 2009) of foregrounding of able body in withholding, triage or rationing of care as cure, as well as warning of “social” deaths in our disablist language use, and real deaths in revoking of rights in health and social care policies (Abrams and Abbott, 2020; Tidball et al., 2020). Disability studies researchers, while long critical of the medical model and curative imperative (Clare, 2017), are pointing to an unethical “curation” or “social sorting” (Grover and Piggott, 2010) in how the able body now gets protection against an infection, access to critical care, therapies and vaccines (Scully, 2020), according to a new curative “imperative of health” (Lupton, 1995) or distributed “logic” of cure (Mol, 2008). The logic of cure describes how an “imperative of cure” becomes normalized in our social and cultural lives and is increasingly commodified but not distributed equally nor a choice. Neoliberalism and promises of late modernity have been incorporated in such a logic of cure, in terms of a “biopolitics of cure” in how patients, doctors, researchers, pharmaceutical companies and financial investors create momentum around specific infectious diseases, genetic disorders, chronic or neurological conditions and now in its acceleration for the general population during the COVID-19 pandemic.

Disability and Mental Health: Reflections on the Contemporary Hindi Cinema

© Media Watch 12 (1) 7-19, 2021ISSN 0976-0911 | E-ISSN 2249-8818DOI: 10.15655/mw/2021/v12i1/205454 Disability and Mental Health: Reflections on the Contemporary Hindi Cinema Shivanee & Manoj Kumar Yadav National Institute of Technology (Hamirpur), India Abstract Contemporary research in disability studies has conventionally focused on mental health, chronic diseases, and illness as generic concerns in literature, arts, and […]

Exploring the wellbeing of Australian families engaging with the National Disability Insurance Scheme in rural and regional areas

Being the parent of a child with a disability and complex medical condition has been described as one of the most life-affirming, meaningful and challenging things a person can do. Co-ordinated supports are important to ensure the inclusion, participation and wellbeing of all family members. Australia’s National Disability Insurance Scheme (NDIS) is designed to support Australians aged under 65 years who have a disability. Concerns have emerged regarding inequities in access to services provided within this scheme. The aim of this study was to explore the experiences of families living outside urban areas and engaging within the scheme. Utilising interpretative phenomenological analysis, this research provides important insights into the contextual factors that influence the subjective wellbeing of all family members and the manner in which the market-based NDIS may produce inequities in wellbeing outcomes for families. Points of interest This article looks in detail at the lived experiences of families navigating supports provided under the National Disability Insurance Scheme (NDIS) and other primary service systems in rural regions across Eastern Australia. Each family included within this study experienced multiple episodes of delays, feelings of isolation and fears that their family member was missing out on essential supports and services, despite having approved funding packages under the NDIS. All participants in this study highly regarded, valued and respected their children and worked to ensure their safety and wellbeing. Their frustration was not for their children but for the failure of the NDIS to demonstrate these values. This paper is an important contribution to research in disability studies, and also has the potential to influence further development in this field and in shaping the future of the NDIS.

A wheelchair in the Cape Flats (South Africa). Negotiating one's mobility and identity with a locomotor disability

As a tool for social participation and inclusion, the wheelchair constitutes an interesting entry point to study the everyday experience of people with physical disabilities. This paper offers to discuss how people learn to use the wheelchairs, how they move with them, and how the chair influences their inclusion. Based on an eighteen-month ethnography in a Coloured township in Cape Town (South Africa), such a reading of the wheelchair calls for a relational and intersectional approach of citizenship. Defined broadly as one's relationship to their body, their environment, their relatives, and the State, citizenship is experienced through a web of social, institutional, and material relationships. This approach ultimately raises issues of inclusion, belonging, and stigmatisation. After presenting the context of the research, I discuss the notions of active citizenship, modern citizenship and the right to the city. The conclusion comes back to the ideas of relational and intersectional citizenship as a way forward for research in disability studies and in South Africa.

Clear Indistinct Ideas: Disability, Vision, and the Diaphanous Body in Joyce’s Ulysses

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.

Knowledge Translation from Disability Studies to Policy Makers: Literature Review and Expert Consultation

Disability policy is currently receiving more attention than it has in the past 35 years. How have disability studies researchers participated in these processes, providing the results of their research to ensure the best possible evidence-based policy? This paper reviews the literature on barriers to knowledge translation from disability studies researchers to policy-makers, as well as the incorporating the recommendations of a high-level expert panel of experienced policy makers in disability portfolios. The principal barriers identified are: awareness of the policy process, awareness of government’s agenda, timing of information, format of the message, and commitment to the relationship. The panel offers five recommendations to address these barriers.

Contextualising disability and dentistry: challenging perceptions and removing barriers.

This paper explores the contextualised relationship between disability and oral health, locating questions about the oral health and oral health care of disabled people within wider debates about the material, social and cultural barriers that disabled people face when accessing health care. Sociological and disability studies research is drawn on to highlight potential barriers to oral health for disabled people and outline alternative ways of looking at, thinking about and challenging these barriers. Starting with a brief look at definitions and understandings of disability and the impact of this on attitudes, research on the multi-level barriers faced by disabled people within oral health care is then highlighted. The article concludes with some thoughts on how research from other disciplinary traditions can be useful in helping to make dentistry more prepared to appropriately and successfully meet the needs of disabled people, both in a special care setting but also, more crucially, in a general dental setting.

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.

Beautiful Monsters: Sickness, Disability, and the Extraordinary Body

This essay builds on work by disability scholars such as Rosemarie Garland-Thomson and Kate Ellis to discuss the progression of the physically disabled body into the extraordinary body in horror films, including Alien: Resurrection (1997), Planet Terror (2007), and A Quiet Place (2018). Applying disability studies research in parallel with theories about the non-normative Gothic body, it argues that contemporary horror builds on the subversive Gothic; avoiding physiognomical prejudices, which suggest that external physical difference is caused by deviance within. This work draws from practitioners such as Fred Botting, Susan Sontag, Joshua David Bellin, Sharon Snyder, and David Mitchell, as well as director Breck Eisner, developing theories such as the transgressive – sometimes dangerous – figures of the supercripple and the hyper alive, before going on to discuss the fear of sickness underlining metamorphic monster narratives. The transgressive nature of the Gothic aligns with the metamorphic properties of sickness and disability, disrupting the healthy/sick, human/monster binaries. Therefore, this work argues that the key to characters with disabilities surviving – or even thriving – in horror and science fiction is to accept and create a symbiotic relationship with their disability, transforming the non-normative body into the extraordinary one.