Disability Studies Literature Research Articles

Co-Producing access(ible) Knowledge: Methodological Reflections on a Community-Based Participatory Research

This paper is a methodological reflection on a community-based participatory research (CBPR) project that used the photovoice method to unravel the educational experiences of disabled college students in China’s higher education institutions. Although CBPR endeavors to nurture equitable community engagement in research processes, there are practical challenges to address the full participation of people with divergent disabilities and access needs. Drawing upon the critical disability studies literature, and particularly upon the activist scholarship of disability justice that revolves around interdependency, collective access, and cross-disability solidarity, we provide an open discussion on the complexities, tensions, and challenges of envisioning and creating access for participants with different disabilities in a visuality-centered CBPR. Our findings suggest that access creation in CBPR should go beyond the checklist style of accommodation and instead be approached as relational, dynamic, and iterative processes that require ongoing reflection, (re)learning, and negotiation among researchers and participants. We implemented nonvisual photography to adapt to the visuality-centered bias in the photovoice method. Nonvisual photography empowered participants with visual disabilities to evoke multiple sensorialities in their photo-taking, displaying, and interpretation. Moreover, the participants without visual disabilities also learned and practiced collective access and interdependency through co-transforming the CBPR into an accessible space for all. The heterogeneity among participants with divergent disabilities and access needs challenged CBPR’s envisioning of a unified community with recognized commonalities. The inclusion of participants across disability groups created an opportunity for all participants to draw meaning from the ableist social and political circumstances that forged them as a community and to develop a sense of belonging and bonding in and through CBPR. In that light, disability justice and access should be reimagined and incorporated into CBPR.

Actually Accessible Data: An Update and a Call to Action

As funder, journal, and disciplinary norms and mandates have foregrounded obligations of data sharing and opportunities for data reuse, the need to plan for and curate data sets that can reach researchers and end-users with disabilities has become even more urgent. We begin by exploring the disability studies literature, describing the need for advocacy and representation of disabled scholars as data creators, subjects, and users. We then survey the landscape of data repositories, curation guidelines, and research-data-related standards, finding little consideration of accessibility for people with disabilities. We suggest three sets of minimal good practices for moving toward truly accessible research data: 1) ensuring Web accessibility for data repositories; 2) ensuring accessibility of common text formats, including those used in documentation; and 3) enhancement of visual and audiovisual materials. We point to some signs of progress in regard to truly accessible data by highlighting exemplary practices by repositories, standards, and data professionals. Accessibility needs to become a mainstream component of curation practice included in every training, manual, and primer.

4Disability Studies

Abstract This review of disability studies literature published in 2022 examines the field’s current investment in points of departure from ableist and neurotypical access to communication, work, and care. Such topics have been central to practices and theoretical concepts within disability justice movements, the neurodiversity movement, and the space of disability studies scholarship for at least the past fifteen years. While the literature surveyed in this review builds on that corpus, it is also imbued, whether explicitly or implicitly, with the continuing effects of the Covid-19 pandemic, the rhetorical impacts of the 2020 US presidential election and the responses or lack thereof to the longstanding accessibility needs of disabled and neurodivergent populations illuminated through global lockdowns. The review considers Akemi Nishida’s Just Care: Messy Entanglements of Disability, Dependency and Desire, Joshua St. Pierre’s Cheap Talk: Disability and the Politics of Communication, and the spring 2022 special issue on ‘Sex Work and Disability’ from Disability Studies Quarterly.

Identity construction among deaf adolescents and young adults: A literature review.

Identity construction is an integral developmental task for adolescents and young adults (AYA). The intersection of deaf identity and disabling hearing loss (DHL) adds a layer to the complex process of identity construction. This literature review highlights the self-ascribed deaf identities of AYA and seeks to understand how AYA with DHL forge these identities. Knowledge areas for prospective research and practice are uncovered. A traditional literature review of qualitative empirical evidence on AYA's accounts of their deaf identity construction was conducted on seminal literature and peer-reviewed journals in psychology, disability studies and deaf studies. The emerging self-ascribed deaf identities of AYA are diverse. The identities include Deaf, hearing, hard-of-hearing (HOH), bicultural HOH, identities that detach from disability, bicultural DeaF, unresolved and fluid identities. Complex trade-offs exist where the construction of certain identities forgoes certain reasonable accommodations, interventions or relations that are critical for personal development and wellbeing. Current literature orients deaf identity formation around hearing status and Deaf-hearing communal dynamics. In-depth research comprising facets of AYA's personal, enacted and relational identities is required to conscientise rehabilitation professionals about the nuances of deaf identity issues and how to develop interventions that are supportive and responsive to the clinical and psychosocial challenges of AYA with DHL. This paper deviates from the d/Deaf identity dichotomy, revealing a spectrum of deaf identities that AYA forge. The rationales of AYA's deaf identities, underlying processes and possible vulnerable identities are unpacked. Recommendations for prospective research pertaining to identity construction among deaf AYA are made.

International engagement with North Korea: disability, human rights and humanitarian aid

This article examines disability rights in North Korea as an area of shared interest between humanitarian workers (who operate inside, with the consent of North Korean authorities) and human rights actors (who work outside, in defiance of the regime). Disability issues represent a notable deviation from the usual separation evident between these actors when it comes to their work on North Korea, insofar as the issue is one that both groups agree represents a critical area for engagement. Drawing from a small but deep pool of expert interviews, this article argues that international practitioners across these approaches recognise evidence of improvements in the area of disabilities inside North Korea and perceive potential for further meaningful change in a country that can be difficult to understand and challenging to achieve progress within. It further argues that the human rights model of disability provides a conceptual framing rooted in the disability studies literature, which allows for a clearer articulation of the shared meanings embedded in the different approaches to disability in North Korea.

How educational systems respond to diversity, inclusion and social justice: Disability, power, discipline, territoriality and deterritorialization.

This paper presents a critical examination of a vexed issue relating to how educational systems respond to diversity, inclusion, and social justice. Whilst there are unique factors specific to the various educational sectors; that is, to early years, schools, colleges, higher education and to the life‐long learning sector, this paper explores education and diversity in its broadest sense and recognizes that issues are as much cross‐sector as they are within‐sector. Further still, this paper shifts across disciplinary epistemic boundaries making use of Foucault's tools and the work of Deleuze and Guattari. Given this broader context, this paper primarily traverses the borders of schooling and higher education. It utilizes the notion of scales of justice and draws upon the work of Fraser and explores how this can offer insights into issues not only in relation to redistribution and recognition, but also to representation. It intentionally, draws upon (critical) disability studies literature; and the often‐forgotten discrimination known as disability. It acknowledges the various paradigms and terminological descriptors associated with disabled people, how these are intentionally, I argue, produced and re‐produced, subject to a process of misframing, misrecognition and maldistribution through various territorialized and often segregated educational spaces. In response, this paper offers a reading of dis/ability which moves through theoretical and conceptual understandings and advances the notion of deterritorialization in order to escape, engage and identify larger patterns of inequality. It offers different insights, provides an alternative mapping that can raise different critical questions about disability, also to issues of diversity, inclusion, and social justice.

“Dirty looks”: A critical phenomenology of motorized mobility scooter use

The use of motorized mobility scooters has become increasingly prevalent. Drawing on the critical-phenomenology and disability-studies literature, this study explored the embodied nature of scooter use among 20 new scooter users. The analysis revealed four themes: 1) Navigating the social environment and being (un)seen presented a paradox of how hypervisibility and invisibility can both exist; 2) Transitioning to scooter use revealed the affective component of becoming a scooter user despite the underlying desire to avoid unwanted attention; 3) Experiencing accessibility challenges en route and at destinations demonstrated that the inconsistency in accessibility along different routes unavoidably makes disability more visible; 4) Strategic and personalized use of devices for mobility illustrated how reliance on other mobility devices (e.g. canes and walkers) can be used as a strategy to circumvent the barriers and lessen the visibility of disability. The lifeworlds of “lived relation”, “lived body”, “lived space”, and “lived things” encapsulated the multi-faceted experiences of new scooter users. The critical phenomenology of scooter use emphasized the need for creative strategies to address the physical and attitudinal barriers as well as scooter design-related concerns.

Bridging the divide: understanding collaborative action in disability-inclusive disaster risk reduction through socio-cultural activity theory

PurposeThis paper presents a methodological reflection on the use of socio-cultural activity theory (SCAT) as a framework to understand collaborative action and problem-solving between people with disabilities and non-disabled stakeholders in three disaster risk reduction (DRR) initiatives led by Disabled People's Organisations (DPOs) in Indonesia.Design/methodology/approachThis paper is based on case study research, using a multiple case design. It looks at the conception and implementation of three DPO-led DRR projects in Indonesia. It focuses hereby on the processes and outcomes of collaborations between DPOs and non-disabled stakeholders. It presents a reflection as to what extent the six elements of SCAT were present.FindingsThe investigation of SCAT's six elements captured the co-construction of DPO-led DRR projects and constant changes and transformation in implementation. The findings reveal the dynamics of the collaboration between DPOs and non-disabled stakeholders (e.g. funding donors, DRR experts, government and community groups) and its outcomes and learning points.Practical implicationsSCAT can provide a better understanding of collaborative learning processes and associated outcomes between DPOs and DRR actors. Such collaborations facilitate the timely and relevant inclusion of people with disabilities in DRR initiatives through DPOs' leadership in DRR. Furthermore, such initiatives can promote the realisation of the disability-inclusion principle of the Sendai Framework for DRR, which is underpinned by the all-of-society approach to DRR.Originality/valueThis paper presents a reflection on the use of SCAT in inclusive disaster studies, thereby enabling further investigation and understanding of how the collaboration between disabled and non-disabled stakeholders occurs, and its implication. This is a topic that has been rarely tackled in the disability and disaster studies literature and practice.

Greta Thunberg is ‘giving a face’ to Climate Activism: Confronting Anti-Feminist, Anti-Environmentalist, and Ableist Memes

ABSTRACT Anti-feminists, anti-environmentalists, and ableists use memes of activist Greta Thunberg, especially representations of her face, to angrily depict her as irrational and a monster. Participants in these interlinked groups create straw versions of feminist activists and distinguish men’s purported rational development of civilisation from emotional girls, women, and nature. Individuals perform such contemptuous operations, as I argue throughout this article, by misrepresenting Thunberg’s climate and feminist platform and shifting the debate from her environmental advocacy to her embodiment and emotions. I closely read these texts and employ academic literature on anti-feminisms, straw arguments, and straw feminisms to suggest how anti-feminists render simplified figurations. Given my consideration of how anti-feminist, anti-environmentalist, and ableist positions are enmeshed in dismissing Thunberg’s activism and physiognomy, I also outline environmental scholarship that addresses gender and disability studies literature on Asperger syndrome and enfreakment. These are complicated critical gestures, but they are necessary since the over 3,000 memes that I studied, and the associated politics, function by simultaneously dismissing girls, women, feminism, the environment, and people with disabilities. Such an analysis of online texts is pressing since anti-feminisms are designed to disqualify feminist thinking about oppression and the vitality of feminist dialogues with related political movements.

‘Who will clean up the mess?’: reflections on media coverage of a human–guide dog pair in Southeast Asia

This article analyses media representations of Lashawn Chan (dog) and Stevens Chan Kum Fai (human), who are considered the first recorded service animal–human team in Malaysia. The article reflects on the pair’s public relationship as an intersectional, multi-framework that is relevant to both disability and animal justice. Following both critical animal and disability studies literature, we read media reports of Lashawn and Stevens’ public encounters. These stories frame the pair as spectacle, threat, and resource. They reveal the influences of cultural and social conventions that utilise guide dogs as advocacy tools, as well as public attitudes towards guide dogs and their users in Malaysian and western contexts. The authors advocate for alternative representations based on interspecies interdependence.

‘How Can Anyone Live Like That?’ Exploring the Conscious and Unconscious Implications for Disabled People of any Change in Assisted Suicide Law

This paper explores the issue of assisted suicide in relation to disabled people from a psychosocial perspective. The implications, particularly the unconscious implications, for disabled people and for the psychosocial dynamics around disability if assisted suicide was made lawful in the UK are explored. Assisted suicide is the subject of persistent attempts at legal change and while not, in theory, specific to disabled people, the issue brings some of the psychosocial dynamics around impairment and disability into focus, illuminating the attitudes and emotions with which disabled people must try to live. Psychoanalytic ideas in relation to trauma, loss, mourning and containment are drawn upon with particular reference to the work of Freud, Klein, Bion and more contemporary thinkers such as Garland, Sinason and Rustin. The paper draws on three texts by disabled people in order to explore emotional responses to profound impairment. Attachment theory helps in considering varying narrative styles. Disability studies literature and legal, social and political contextual issues inform the psychosocial perspective applied in the paper.

Ambivalent subjectivities: experiences of mothers with disabilities in Russia

Women with disabilities are still rarely imagined in the role of a mother. Narratives about motherhood that promote traditional gender roles and the primary role of motherhood in women’s lives (pronatalism) in countries like Russia emphasize the value of non-disabled and heteronormative bodies and minds. The lived experiences and the lived citizenship of mothers with disabilities disrupt societal assumptions about motherhood. However, the structural environment of pronatalism inevitably influences the ways in which mothers with disabilities understand motherhood and construct their sense of selves (subjectivities). Drawing on the framework of citizenship and the feminist disability studies literature, this article analyzes how the personal and the political are intertwined. The analysis is based on empirical data obtained from qualitative interviews with 14 mothers with disabilities in a provincial city of Russia.

Physicians' Perceptions of Barriers to Equal Access to Reproductive Health Promotion for Women with Mobility Impairment

In Canada, 15% of women report having a disability, most frequently mobility-related. Research with women with disabilities has for decades brought attention to barriers to reproductive health promotion. Research with physicians regarding why these barriers exist and how they can be dissolved has not occurred. Physicians were recruited through email and pamphlets to participate in 30-45 minute in-person interviews, audiotaped and transcribed verbatim. Charmaz-based qualitative analysis was supported by NVivo10TM software. Twenty-five interviews were conducted before theoretical sufficiency. Six themes were co-constructed: I-Physicians’ Perceptions of Barriers; II-Physicians' Perceptions of Consequences of Barriers; III-Resolving Barriers; IV-Physicians’ Sub-Understanding of Legal Right to Accommodation; V-Obligation of Physicians to Advocate for Accommodation; and VI-Language Suggesting Physicians’ Lack of Understanding of How Persons with Disabilities See Themselves and Want to be Seen. Physicians identified physical access barriers previously identified in critical disability studies literature, but did not identify the barriers of physician attitudes and lack of information provision as reported in this literature. Physicians perceived their additional time for pap smears and other surveillance strategies as barriers, particularly when not remunerated. Physicians were unaware of their legal obligation to accommodate under human rights codes, perceiving that taking extra time to provide accommodation was doing so out of the "goodness of your heart". Physicians used language illustrating many were unaware of how disabled persons see themselves and want to be seen. Education regarding disability rights and culture must be introduced immediately and prominently into all levels of medical education, with the educators being people with disabilities.

Un/covering: Making Disability Identity Legible

This article examines one aspect of disability identity among people with non-apparent or "invisible" disabilities: the decision to emphasize, remind others about, or openly acknowledge impairment in social settings. I call this process "un/covering," and situate this concept in the sociological and Disability Studies literature on disability stigma, passing, and covering. Drawing on interviews with people who have acquired a non-apparent impairment through chronic illness or injury, I argue that decisions to un/cover (after a disability disclosure has already been made) play a pivotal role for this group in developing a strong, positive disability identity and making that identity legible to others. Decisions to pass, cover, or un/cover are ongoing decisions that stitch together the fabric of each person's daily life experiences, thus serving as primary mechanisms for identity negotiation and management.

Engaging with materialism and material reality: critical disability studies and economic recession

Critical disability studies has been accused of preoccupation with cultural, lingual and discursive matters, and in doing so failing to adequately engage with the often-harsh material reality of disability. This has contributed to a circumstance in which disability studies has produced a lack of material focused directly upon economic processes. Concurrently, disabled people have encountered a momentous economic recession that has threatened their basic economic and human rights. This article seeks to address what is evidently a gap in the burgeoning critical disability and disability studies literature. That is, a gap largely uninhabited by attempts to apply a critical disability studies perspective to macro-economic processes. The article focuses predominantly on two facets of critical disability studies as identified by Goodley: the self and other, and intersectionality. The article concludes that critical disability studies has much to offer through the production of new understandings of economic processes.

Disability and the meaning of reproductive liberty

ABSTRACTThis article brings together three literatures: political theories of liberty, feminist theories on reproductive rights, and the disability studies literature on ableism. I engage with these debates to consider the meaning of a core political concept – liberty – by examining women with disabilities’ reproductive experiences and interests. In light of the dynamics of gender inequality and ableism, I seek to problematize the notion that reproductive freedom is synonymous with the negative right to privacy. Although governmental noninterference has allowed many women to gain control of their bodies and reproductive fates, the narrow focus on privacy – and the attendant issues of contraception and abortion – overlooks important dimensions of reproduction that are more likely to affect women with disabilities, including the structural factors that discourage disabled women from having children at all. The article concludes that feminist theorists should embrace a conception of positive liberty committed to actively dismantling ableist barriers to motherhood, including: inadequate access to assisted reproductive technologies; a lack of financial support for social welfare programs; and discriminatory attitudes that assume that disabled women are not “mother material.” Until these structural obstacles to “choice” are eradicated, genuine reproductive liberty will remain an elusive goal for many women with disabilities.

Confronting Ableism: Disability Studies Pedagogy in Preservice Art Education

This article discusses an action research project in which critical Disability Studies pedagogy was integrated into two Art Education courses for preservice art teachers. Research participants investigated Disability Studies literature and disability visual culture and designed lesson plans, teacher art examples, and artist’s statements that confronted ableism. Attitudinal surveys were administered before and after the project, and several participants were interviewed. First, the project is described; then, student outcomes are examined to illuminate Fiona Campbell’s research on ableism, specifically the two core elements that are central to regimes of ableism: the notion of the normative and normate individual and the enforcement of an able/not-able constitutional divide. Data suggest that preservice art teachers are ready and willing to engage Disability Studies pedagogy in pK–12 classrooms; as such, this study anticipates a Disability Studies Art Education agenda and exemplifies how Art Education can inform Disability Studies in expanding beyond academia.

My Two Moms: Disability, Queer Kinship, and the Maternal Subject

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

Bio-political Perspectives on the Expression of People with Disabilities in Music Therapy: Case Examples

The burgeoning interdisciplinary field of disability studies has understood disability not as medical pathology, but rather as a social and cultural construction. It involves political attempts to move the dividing line between dis/ability, ab/normal, as well as gender, race, or ethnicity, from the perspective of “claiming disability” (Linton, 1998) as a positive political and cultural identity. However, in the music therapy field, disability studies has been generally ignored because music therapy has traditionally been ensconced in a medical model rather than a socio-cultural or political model. In this article, I will discuss the issue of power relationships inherent in music therapy by referring to recent literature in disability studies.

The Story of My Work: How I Became Disabled

Perhaps the best opening line in disability studies comes from Georgina Kleege: “Writing this book made me blind.” Following this honorable tradition, I begin my explication of disability studies through my own experience with a similar starting point: “Feminism made me disabled.” Honoring as well the tradition of making theory through narrative, I also follow Helen Keller, who like Kleege situates her knowledge in the local. From these exemplary works of feminist disability studies, I develop an explication of how I grew disability studies and how it grew me. Throughout, I consider the categories of disabled and nondisabled and the ways in which they have developed in disability studies literature broadly. I conclude by asserting the importance of both access and identity and community for disabled people. Keywords: feminist disability studies, disability identity, misfitting, history of disability studies