Disability Lens Research Articles

Together in the Mikrokosmos: Exploring Disabled Embodied Experiences in Designed Sociotechnical Worlds

For geographically dispersed communities, including professional, academic, hobbyist, and fandom communities, in-person events and meetups play a crucial role in the function and health of the whole community. Building off prior literature, we take a nuanced look at large scale community events that blend online and offline interactions across digital and physical embodied experiences in order to build understanding of how this knowledge can be leveraged to build more accessible hybrid modalities for community events. Building on this foundation, this paper presents a comprehensive study using ethnographic methods to examine large scale community events, specifically stadium music concerts of varying modalities (e.g., in-person, live-streamed). Using a disability lens, we explore how such community events are experienced and technologically mediated, as well as how the community and individuals design and construct their own sociotechnical worlds across multiple modalities and embodied experiences. By centering the disabled embodied experience, we examine how community members navigate the concert environment, time, and the social experience of concert attendance. Based on our findings, we highlight the nuanced complexities of inclusive community-centered large scale, multi-modal events.

Inclusive entrepreneurship ecosystem for PwDs: a reflection on SDGs

PurposePeople with disabilities (PwDs) encounter several impediments to employment prospects, contributing to India's huge employment gap. Entrepreneurship offers a different avenue for PwDs to overcome these constraints. Entrepreneurship Support Organizations (ESOs) play a significant role in assisting PwD entrepreneurs. The present study aims to explore challenges encountered by entrepreneurs with disabilities (EwDs) in starting or sustaining a business in an Indian ecosystem. The study further aims to examine the status of entrepreneurial outcomes while comprehending the intersection of the challenges of disability and entrepreneurship. The study draws on stakeholder and social identity theories to understand this critical connection.Design/methodology/approachA qualitative approach is applied to study the phenomenon. Semi-structured interviews were conducted with 13 EWDs and 5 ESOs to explore the challenges faced and the available support in the Indian context. The study explores the level of coordination and roles these organizations play in fostering an entrepreneurial culture for PWDs.FindingsThe research findings explore novel challenges and facilitators of entrepreneurial pursuits of EwDs. The study further offers implications for policymakers to foster inclusive infrastructure, financial institutions to provide accessible credit options, and ESOs to amplify tailored assistance. Importantly, these dynamics have implications for advancing relevant Sustainable Development Goals.Originality/valueThe intersectional lens of disability and entrepreneurial challenges offered to study PwD entrepreneurship highlights new directions for exploring the phenomenon in deeper detail. Further, the theoretical underpinnings of stakeholder and social identity theories provide practical and indispensable insights into the phenomenon.

Nothing About Us Without Us: Improving Representation of Disability in Medical School Curriculum Through Explicit Inclusion.

Medical school curricula across the United States fail to adequately prepare students to provide high-quality care to and advocate for patients with disabilities. To address this shortcoming at one large, urban medical school, the Curriculum Committee at Sidney Kimmel Medical College (SKMC) formed a taskforce of students and faculty to evaluate the degree and quality of disability representation in its undergraduate medical education (UME) curriculum. Taskforce members solicited input from five community members in various fields of disability advocacy to craft recommendations that reflected this community's vision for disability education in UME. Community partners suggested areas of focus including clinical skills, accessibility of healthcare facilities, awareness of intersectionality with other identities, acknowledgment of bias, and respect for the patient's autonomy via their "right to risk." The taskforce report to the Curriculum Committee included 9 recommendations for curricular revision based on community partner suggestions, 6 of which were accepted and are being implemented into the curricular content for the class of 2026 and beyond. This novel approach to implementing curricular change could encourage other medical schools to evaluate their own curricula through the lens of disability and prompt curricular revision with the input of community partners with disabilities, students, and, faculty.

This Is Your Voice on T

Trans bodies and lives—and by extension, voices—are at the forefront of contemporary cultural, legislative, and political discourses in the United States and beyond. In this article, I apply a disability lens to concerns about exogenous testosterone (T) and transmasculine vocality, as well as larger anxieties around the transmasculine body as constructed or even irreversibly damaged. Inspired by the use of bodymind as a term in disability studies and activism, I propose bodyvoice as a term in vocal studies to express that the body, voice, and perceptions around them are often interdependent. On social media, the photographic transition timeline constructs a stagnant, binary, before-and-after narrative in contrast to the more fluid sonic transition timeline, in which trans people on T record and display a series of vocal changes, either spoken or sung, over time. The sonic transition timeline functions as a vital way of sharing embodied transvocal knowledge in an increasingly hostile climate.

Rethinking “Transition” in Central and Eastern Europe and the Former Soviet Union Through the Lens of Disability

ABSTRACT The concept of disability can serve as a valuable lens through which a host of established subjects can be revisited in a new light. These include welfare and “welfare dependency,” unemployment, gender relations, social movements, and grassroots activities, the impact of international norms such as human rights and their application in local contexts, and the impact of neoliberal reforms. Despite this potential, disability, unlike the concepts of class, “race,” sexuality, and ethnicity, has yet to make inroads into the field of postsocialist studies. It is precisely this lacuna which our special issue seeks to address.

Aboriginal Kinship Carers and Children with Fetal Alcohol Spectrum Disorder in Western Australia: Advancing Knowledge from an Indigenous and Disability Lens

Children and youth with fetal alcohol spectrum disorder (FASD) have limited access to assessment, diagnostic, and treatment resources – a distinct disadvantage in meeting their care needs in Australia. Limited knowledge exists on the intersection of FASD, Indigeneity, racism, trauma, and child welfare involvement. Notably, the lack of support for children with FASD increases the risk of adverse outcomes, including incarceration, homelessness, mental health problems, and early mortality. Children with FASD are often cared for in the child protection system by kinship carers, many without a diagnosis or the benefits of FASD informed care. Rarely considered is the Australian response to FASD or the Aboriginal worldview on disability. Qualitative research was utilized to conduct semi-structured interviews with six carers of Indigenous children with FASD–three foster carers and three relative or kinship carers. Seven core themes identified by carers included: FASD awareness, caregiver health, advocacy for the child, mothers of the children with FASD, loss and grief experienced by the carer, social costs, and children in child protection care. Carers identified that limited resources existed to address the disabilities and care needs of children, including training and respite. Financial disparity exists with relative carers receiving less income than foster carers. Carers demonstrated advocacy, resiliency, and resourcefulness in providing care. A lack of knowledge of FASD and core resources in child welfare services were identified as major challenges in providing care. This research examined the caregiving experiences of foster and Aboriginal kinship carers, caring for children with FASD in child protection.

Integration of a Disability Lens as Prerequisite for Inclusive Higher Education

PURPOSE. Occidental higher education often approaches disability as a disparate issue, failing to recognize that it is part of human diversity. Such an approach hinders inclusive education because it overlooks how disability is intertwined with other identities and concepts of exclusion. The overarching aim of this paper is to enhance understanding of (intersecting) disabling processes within education policy and practice and the impact thereof on students; and to raise educators’ awareness about how integration of knowledge from Disability Studies within pedagogy and their daily interaction with students, can positively influence disabled students’ wellbeing, their study opportunities and aid the overall process of inclusion. APPROACH. This paper offers a disability lens by (1) presenting a literature overview from a Disability Studies (DS) perspective about disability and exclusionary phenomena, in particular disablism and ableism; (2) substantiating how a current focus on accessibility hinders actual inclusion; (3) analysing a case-study through the presented perspective with attention to Dutch contextual factors. For the case-study, the first author and ‘Tess’ engaged in regular conversations during a year in which Tess shared her experiences as a student of higher education. In this paper, a selection of these experiences is presented from a reflexive perspective and with application of the presented frameworks. With this, the complex impact of exclusionary processes on interactions between students, educators and on the organization of university involved (social) events is illustrated. FINDINGS. The lack of nuanced, fluid and intersectional approaches to disability within mainstream education hinders the recognition of (epistemic) injustices. Exclusionary processes and practices in higher education remain unacknowledged, although they negatively impact disabled students and block their epistemic contribution. Moreover, the continued focus on accessibility hinders implementation of the international convention on the rights of persons with disabilities and deflects attention from the fact that inclusive education requires systemic change and a multi-layered approach. KEY MESSAGE. The current trajectory of disability inclusion is counterproductive without true systemic change. Integration of the presented disability lens is imperative for truly intersectional approaches to inclusion and offers educators a way to positively influence students’ wellbeing and identity development, even when policy changes are not yet achieved. Points of interest: Knowledge and attitudes about disability in higher education systems, in policies and practice, often do not portray disability from the perspective of disabled people themselves. There is also a lack of understanding how disability is part of human diversity and is intertwined with other identity aspects. Because higher education often focusses on including disabled people in existing systems by way of individual accommodations rather than on changing the design of the system, disabled students experience various forms of exclusion, varying from opportunities to study to the way they are approached by educators, that effect their wellbeing. The usefulness of disability studies theory is illustrated by applying them to the experiences of ‘Tess’, demonstrating how her personal and professional life was influenced by them. We argue that policies need to change and that educators themselves can work on true inclusion by recognising disability as diversity and by integrating up-to-date knowledge from the perspective of disabled people themselves in their approaches.

Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.

The Body, the Earth. The Participation of Disabled People in the Environmental Discourse

The essay aims to challenge the position of disability within environmental analyses and activism. I explore the broad environmentally focused discourse: namely, I will refer to the sociocultural texts, ideologies and worldviews that are implicated in the accounts of the environmental crises provoked by climate change. Which subjects have a voice, and which tend to remain in the background? Should the environmental discourse be understood as “neutral”, because of what is at stake on a global level? I will consider these concerns through the lens of disability. Firstly, I will explore how disability usually functions as a signpost for two issues: (I) disabled people are represented as victims of the precarious living conditions exacerbated by climate change and environmental devastation and, (II) disability is employed as a cautionary tale regarding the outcomes of environmental devastation. Secondly, I will examine a performance called “The Mermaid”, by Australian artist Hanna Cormick, which addresses the intersection of disability and environmental damage. I will read Cormick’s work through Donna Haraway’s concept of witness, proposing an update of environmental discourses. The aim behind this new framework is to positively situate disabled people: they should play an active role in addressing toxicity, capitalist extractivism and the entangled nature between the human subject and the environment.

SOCIAL PARTICIPATION AMONG OLDER ADULTS WITH UNMET NEED CONSEQUENCES: FROM A DISABILITY PERSPECTIVE

Abstract This study examines the relationship between social participation and consequences arising from unmet ADL, IADL, and mobility needs using disability studies frameworks. The aging field has yet to fully incorporate theoretical perspectives from disability scholarship into our understanding of health, wellbeing, accessibility and inclusion. By situating the experience of aging, aging with care needs, and having unmet care needs within a disability studies lens we gain insight into the ways we are called to redesign the provision of supportive services to ensure meaningful inclusion in community. To illustrate this idea, we use Wave 5 from the National Health and Aging Trends Study (NHATS) (n=7,070) to examine the relationship between ADL, IADL, and mobility unmet need consequences and social participation. Both social participation and unmet need consequences among older adults have been explored from healthcare, quality of life, and economic perspectives. However, there is a lack of scholarship linking these two concepts using a disability lens. Preliminary results from a series of linear regressions show a significant, negative relationship between presence of unmet ADL and mobility need consequences and social participation (p < .001). These findings indicate that experiencing unmet care needs may not only have detrimental effects on health, but on overall adult wellbeing and may be infringing on the ability of older adults to engage with community to the extent they wish. By applying disability frameworks, aging researchers are called to reexamine the ways in which we consider accessibility and full inclusion of older adults with care needs.

Disability Data Justice from the Ground Up

Disability advocacy organizations need access to disability data to advocate for human rights, disability justice, and sustainable development goals. Health informatics and Artificial Intelligence that has been developed through an equity-focused process provide important tools that can help address these needs. AI is prone to bias and might exacerbate discrimination and data ableism. A critical disability lens and community collaboration can help to address these biases, and multidisciplinary collaborations with grassroots and community-based organizations are crucial for advancing disability data justice. We have been engaged in a practice-led approach to building a disability justice-focused AI search engine. In the first section of this paper, we report on our co-design process, which included community consultations about disability data justice with local, provincial, national, transnational, and supernational disability organizations and advocates. In the second section, we demonstrate how we applied a transnational disability studies framework during our process of training a search engine AI to function from a disability justice perspective. We demonstrate the semantic and conceptual differences between a transnational approach and a disability rights approach, as a concrete example of how AI bias emerges. We argue that our participatory approach allows us to experiment with data repositories and search engines that confront AI bias and data ableism and reflect community needs.

The Revival of Human Rights: A New Perspective on Human Rights Through the Lens of Disability

ABSTRACT: This article argues that adopting the lens of disability may provide a way forward for the revival of human rights. It shows how it is disability that draws attention to resource deprivation that hampers the enjoyment of human rights. It does so by focusing on two novel aspects of the Convention on the Rights of Persons with Disabilities (CRPD): the general principle of participation and the adoption of a rights-based approach to dealing with disability. To illustrate this view, it uses as example the impact the restrictions have had on disabled people during the Covid-19 pandemic.

Fitting and Misfitting in Higher Education: The Experiences of Disabled Youth in the United Arab Emirates

Drawing on Rosemarie Garland-Thomson’s theory of fitting and misfitting, this article analyzes from a critical disability lens the experiences of disabled students in higher education in the United Arab Emirates. Building on evidence collected from three case studies of misfitting/fitting, I argue that advocacy resulted in innovative, hybridized, and localized solutions to misfitting for minority forms of embodiment. The article traces the operationalization of exclusion and inclusion processes through interviews with students, graduates, and higher education staff conducted from 2016 to 2018. The analysis underlines the importance of a rights-based and context-specific advocacy approach to accommodating minority forms of embodiment in higher education.

A Professional Comedian’s Fundamental Right to Publicly Bully a Child Because of His Disability? Scrutinizing Ward v. Quebec Human Rights Commission Through a Disability Lens

A Professional Comedian’s Fundamental Right to Publicly Bully a Child Because of His Disability? Scrutinizing Ward v. Quebec Human Rights Commission Through a Disability Lens

Strange Vocations

Every vision of education relies on an inchoate anthropology—an implicit understanding of what it is to be human. This article seeks to bring the anthropologies implicit in modern and classical visions of education to light. Uncovering their respective understandings of freedom and disability reveals why we should accept the anthropology implicit in a classical vision of education. This understanding of anthropology through the lens of disability leads us to the heart of classical education by illuminating the strange vocations both of persons with disabilities and of classical educators. Further, it has important implications for the practices of classical schools in welcoming students with disabilities and learning differences.

Citizenship, Pain, and Disability in Samuel Beckett’s Waiting for Godot

Citizenship is popularly associated with able-bodiedness, both physically and cognitively. However, disability studies over the last few decades has revealed the extent to which the idea of the nation as composed of able-bodied constituents is little more than fantasy, one that can create or galvanize barriers to full political and social participation. Part of this task has involved re-evaluating key works of canonical literature through the lens of disability. In the following paper, I apply this approach to Samuel Beckett’s Waiting for Godot and argue that Beckett’s play disrupts not just the fantasy of a nation composed of able-bodied citizens but the language of able-bodiedness itself, which has implications for how we conceive of citizenship and participatory politics. While impairment has been critiqued in Beckett before, the extensive examples of pained and impaired characters in his works have often been subsumed under broader philosophical themes, such as existentialism, nihilism, or Cartesian dualism, and rarely linked to issues of citizenship, politics, or the social and built environment. I explore how Beckett’s approach to theatrical and linguistic performativity contributes to how he staged the experience of pain and disability that has implications for how we conceive of and practice citizenship.

Peculiar Places: A Queer Crip History of White Rural Nonconformity

Peculiar Places: A Queer Crip History of White Rural Nonconformity

Neurodivergence, Embodiment, Empowerment, Pathography: Expressions from the Margins

Abstract G. Thomas Couser (1997:533) asserts in “Disability, Life Narrative, and Representation,” “The autobiographical act models the agency and self-determination the disability rights movement has fought for....” With autoethnographical prose, focusing on individual and community psychosocial implications of trauma, the paper offers story and analysis centered on embodied experience. This paper grounds lived experience of severe traumatic brain injury (TBI) with a lens of de-medicalizing disability. This paper provides windows on largely hidden and little understood forms of impairment from a frequently marginalized individual. The paper examines the experiences of a severe TBI survivor by exploring the temporal dissonance of impaired cognitive processing. The paper uses pathography to give emphasis to relevant Critical Disability Studies and Critical Trauma Studies scholarship. The paper explores how the intersections of living with multiple impairments (disabilities) while pursuing autoethnography as an unaffiliated researcher strengthens disabled identity, empowers the drive for self-determination, and provides agency to assert oneself politically to better reduce stigma and minimize oppression by the dominant culture. This paper examines the confluence of composing personal experiences of severe TBI survival with Disability Studies scholarship that promotes centering of self and (re)creating identity.

Dis/abled decolonial human and citizen futures

ABSTRACT This article utilises the dual methodological lens of disability and decolonisation in order to critically examine, in interdisicplinary and global perspective, what it will mean to be both a ‘human’ and a ‘citizen’ in the 21st century. I propose the development of an epistemological framework and methodology of the dis/abling and decolonising of knowledge on humanness and citizenship in order to anticipate demographic, environmental, and technological futures. Firstly, I critically examine how critical disability approaches challenge the able-ist premises of liberal political theory. Secondly, by critically analysing US immigration and US/UK eugenics movements, I illustrate the able-ist, raced, and colonial constructs of human-ness and citizenship using a dual decolonial and disability methodological lens. Finally, I look towards anticipating human and citizen futures through the case of artificial intelligence, where I illustrate both its reification of a raced and able-ist status quo on the one hand, and the potential for changing terrains of the bounds of human-ness and citizenship.

Disability inclusion in beach precincts: beach for all abilities – a community development approach through a social relational model of disability lens

ABSTRACT In this paper we examine a community development approach to including people with disability in a sport context within beach precincts for a project called Beach for All Abilities. The aim of this research is to investigate innovative and transformative solutions that enable inclusion. The research design used multiple methods and data sources across 30 projects and three geographically diverse precincts. The theoretical framework brought together community development and the social relational model of disability to inform the research. The findings show how the funded organisation working in partnership with not-for-profit, commercial and government programs, facilitated processes and practices enabling greater access and inclusion for people with disability in the beach precincts. These included solutions to constraints in the built, outdoor and natural environments across mobility, vision, hearing, intellectual and mental health disability from low to very high support needs. Yet, the overall program had a major shortcoming in establishing ongoing beach-related activities for people with disability. The paper concludes with implications for longevity, limitations, and future research.