Disability Studies Literature Research Articles

Boon or bust? Heidegger, disability aesthetics and the thalidomide memorial

Disability Studies has begun to interrogate the aesthetics of disability, both in terms of artwork and sensuous apprehension more generally. The present paper is a contribution to this burgeoning literature. Here I seek to demonstrate what the aesthetics of Martin Heidegger offer to that project. I do so in three stages. I begin by reviewing some relevant disability studies literature, highlighting some general themes in Disability Studies’ recent engagement with ‘the aesthetic’, widely defined. Next, I turn to the phenomenology of Martin Heidegger, to add some further philosophical depth to this project. In third and final section, I apply Heidegger’s aesthetics to the recently unveiled thalidomide memorial, to demonstrate the empirical worth of his analysis of artwork. I conclude with suggestions for future Disability Studies.

Transformed Understanding or Enlightened Ableism? The Gap Between Policy and Practice for Children with Disabilities in Aotearoa New Zealand

The concept of inclusion in the New Zealand legislative and policy environment is articulated in a liberal human rights discourse intended to redress past practices of segregation and exclusion. Such discourse has provided the early childhood sector with new ways to speak about disability and inclusion. There is, however, a growing body of evidence to show that how teachers speak about inclusion is frequently not reflected in practices in Early Childhood Education and Care (ECEC) settings. The emerging evidence reported in this article is drawn from an ongoing research project which, in part, examines the views of inclusion elicited through semi-structured interviews with teachers, owners and managers in long-day ECEC—the facilities designed to accommodate adults’ usual working hours. The larger study aims to examine tensions and complexities for teachers, owners and managers in long-day ECEC alongside the views and experiences of parents of children with disabilities. The concept of ‘enlightened ableism’ is introduced to frame an argument that teacher-speak, while overtly liberal, may be combining with a nervousness about disability and inclusion that raises challenges for progressing inclusive practice. Furthermore, current discursive contradictions between liberalism and neoliberalism in the sector appear to be contributing to some teachers’ uncertainty about ways to progress beyond the rhetoric of inclusion. The study is embedded in the Disability Studies literature and informed by Foucauldian theorising about discourse and power. This paper responds to the question: Has legislation and policy transformed understandings about disability and inclusion or merely provided an enlightened rhetoric, which serves to mask the continuation of ableist practices and thinking in the sector?

Being-towards-death and Taxes: Heidegger, Disability and the Ontological Difference

Phenomenological disability studies seek to bridge the gap between the personal experience and cultural production of disability. This paper illustrates the manner in which the everyday experience of disability is shaped into a coherent object within the Canadian federal income tax regime. The Canada Revenue Agency's T2201 Disability Tax Credit Certificate is an essential component in this regard, allowing successful applicants access to tax credits and other programs aimed at offsetting the costs of impairment faced by disabled Canadians. This paper employs Martin Heidegger's notion of the ontological difference—the distinction between beings as merely present objects and Being as human experience—to highlight some of the difficulties faced translating human experience into bureaucratic categories. The argument proceeds as follows. First, the paper reviews the existing phenomenological disability studies literature and reviews the relevant work of Martin Heidegger. Next, the T2201 form is introduced and discussed in light of the ontological difference. By viewing disability as a merely present being, and not a way of Being, a great deal of experience is left out—especially that of exclusion. The paper concludes by highlighting the dividends of the second section, both in terms of future tax forms, and the future of disability studies.

The Youth Activist Forum: forging a rare, disability-positive space that empowers youth

As with many movements operating in neoliberal regimes, Canadian disability movements struggle to maintain momentum and engage youth leadership. Drawing on feminist disability studies, this article presents the findings of a participatory research project on the Youth Activist Forum, an event which brought together 38 youth with and without disabilities to meet new and established leaders with disabilities. We argue that the process of planning, hosting, and attending the Youth Activist Forum forges a complex rare space that facilitates empowerment for youth. We frame the space as ‘rare’ because: the activities and leaders are overlooked by the scholars documenting Canadian disability movements; it is a new experience for many youth participants, planners, and speakers that builds community; it reveals a lack of shared frameworks through uncomfortable moments; and in some ways, it diverges from priorities on the Ontario funding and non-profit landscape. We argue that while rare and difficult to create, this space is necessary as it facilitates empowerment, recognizes existing youth leadership, and helps us imagine the future of disability movements. We conclude by discussing the value of our findings for youth studies researchers, particularly those drawing on disability studies literature and seeking to engage youth on disability issues.

Disability Culture and Cultural Competency in Social Work

Despite recognition of the importance of cultural and social diversity in social work education and practice there is a dearth of social work literature related to disability culture. A review of disability studies literature indicates that the disabled people's movement already affirms and celebrates the existence of disability culture as characterized by several agreed upon assumptions: disability culture is cross-cultural; it emerged out of a disability arts movement and its positive portrayal of disabled people; it is not just a shared experience of oppression but includes art, humour, history, evolving language and beliefs, values and strategies for surviving and thriving. Essentialist concepts of culture, as represented in assimilationist and pluralist social work approaches, provide social workers with the false belief that there are cultural competencies that one can develop that are sufficient to become more culturally sensitive. However, analysis of the critical theory underpinning disability culture demonstrates that an understanding of cultural politics is fundamental to social work education if it is to support the work of the disabled people's movement in demystifying and deconstructing the norms, discourses and practices of dominant culture which are represented as neutral and universal.

Disability as Constructed Difference: A Literature Review and Research Agenda for Management and Organization Studies

Disability theory and disabled people's voices have remained marginal in attempts to include a wider range of theoretical perspectives and voices in organization studies. This includes studies of the normative assumptions underpinning socially constructed categories of difference. This paper addresses this gap by reviewing the literature on social categories of difference, intersectional studies and studies across human resource management and diversity literatures. The argument here is that, while research has begun to move from an individualized discourse of disability, disability remains inadequately theorized as a constructed difference. The paper reviews the disability studies literature to identify the relevance of conceptualizing disability for work organizations, problematizes the concepts of disability and impairment and differentiates competing discourses of disability. The contribution of this paper is threefold. First, it offers an alternative social interpretation discourse which argues that disability is constructed as a negated difference through assumed ableism, which is a normative expectation of non‐disability. Second, it presents impairment effects as legitimate organizing requirements rather than individualized problems. The paper argues impairment effects, the effects of bodily and cognitive variation, have legitimate implications for how disabled people negotiate organizing contexts. Third, it develops a disability studies lens to advance theoretical approaches to the study of social categories of difference in the field of management and organization studies.

Complicating Intersectionality Through the Identities of a Hard of Hearing Korean Adoptee: An Autoethnography

Within education and social justice, the lenses of race, class, and gender are prevalent in analyzing multifaceted oppression, but there is a need to expand beyond those in order to obtain a more in-depth understanding of the intricacies of oppression. The autoethnographic approach enables me to use my experiences a Korean adoptee with a disability as an entry point to examine intersectional and interlocking oppression and to offer a different frame of reference that is absent in the literature: the integration of Korean adoptee and Disability Studies literature to further problematize each field and to complicate and advance the understanding of oppression. The critical self-reflexive process of writing allowed me to contest the prevailing representation and knowledge through my experiences and to develop an awareness of how we all are ensnared in this process of constructing/deconstructing oppression; thus personal and societal experiences of oppression and privilege are not easily separated. In order to shift toward a collaboratively oriented social justice, we must realize that focusing on one or multiple forms of oppression, but not all, cannot lead to true social justice change and transformation because all forms of oppression interact in a convoluted manner that reinforce or undermine each other in an entangled labyrinth.

Introduction: Deleuze, Disability, and Difference

Deleuzoguattarian thought occupies strange and marginal spaces in Disability Studies literature. While some scholars find great depth and richness in work that de-naturalizes language and bodily experience, some find it too far removed from everyday life. But in this issue there are only a few notes about the historical relationship between Disability Studies as a discipline and Deleuzoguattarian thoughts and practices, even though the contributors, as well as scholars such as Margrit Shildrick, Janet Price, and Griet Roets, have a longstanding engagement with the themes and methods. Instead, and as a welcome surprise to the editors, authors in this special issue write with and in (rather than for or against) Deleuzoguattarian thought. Many of the writings have taken the initial call for proposals seriously, using formal as well as thematic framings that illuminate the effects and labor of Deleuzoguattarian work in intriguing ways: what it does rather than what it is. At times, our contributors deconstruct conventional Literary Studies methodologies, evacuate the linearity and clarity of argument, and new forms of (rhizomatic) thought appear on the page. This has provided a challenge to the editors and the peer reviewers alike, and much of the writing here requires an active reader, an imaginative co-creator or co-presenter of textual production. But these features also provide the heart of the original inquiry, the drive we first discussed at a Society for Disability Studies party a few years ago as the idea for the special issue took shape. It has been a long time and the collection is still incomplete. One of the holes in this collection is the absence of work on and with mental-health difference. How can we have a special issue on Guattari and Deleuze, fighters against psychiatric institutions, without the voices and experiences of mental health-system survivors and their allies?1 The answers lie in structural issues of the home discipline of most contributors-namely, Disability Studies. Many potential contributors who submitted deeply intriguing proposals were overloaded, fell sick or experienced episodes of radical difference during the production of the issue, and were not able to work within the production modes academia allows. In a Deleuzoguattarian mode, we wish to offer their absence not (only) as a lack, but as an opportunity to read against and in the interstices of the texts assembled here. What is missing can become a machine that drives knowledge production, sees lacunae as opportunities and spaces of de- and re-territorialization (concepts that will be clarified in the articles). We invite the reader to question how the absences and presences of voices in this collection function as a microcosm of our shared critical landscape. Who finds voice, whose voices might be shrouded by the institutional practices we repeat and perform? Who speaks for whom, and why? How could the methods presented here, with their emphasis on writers with and allies of people with physical impairments, developmental disabilities or cognitive difference, become productive in other contexts? How stable are the categories we presented in the preceding sentence, the supposedly stable naming of certain kinds of difference? Would something like a wiki format, an assemblage over time, be a more appropriate format for Deleuzoguattarian issues than a stable collection of articles? How do structural issues of an academic life, such as job search, tenure issues, teaching evaluations, meetings, temporal and spatial synchronicity, and their alternatives, impact on the nature of scholarship in our discipline(s) and our writing practices? How can Deleuzoguattarian practices un- and redo an understanding of these concerns? Many themes hotly contested and discussed in Disability Studies find rich exploration on these pages: issues of developmental disability/learning impairment, non-neurotypicality, pain, alternative forms of physical embodiment, interdependence, the undoing of (textual) power dynamics, non-dialectical inversions, and dichotomies. …

Placing the ‘mad woman’: troubling cultural representations of being a woman with mental illness in Girl Interrupted

In this article, I examine cultural narratives about the lives and places of women with mental illness in the commercial Hollywood film: Girl Interrupted (1999). In contrast to most of the disability studies literature concerned with cultural representation, this article explicitly examines how the spatiality of ‘mad women's’ lives is constructed through film. Drawing on post-structuralist, and feminist perspectives on disability, and on conceptual ideas from the limited social geographic literature concerned with the lives of persons with mental illness, I explore the contradictory cultural narratives about the lives and places of women with mental illness constructed through this film. This approach recognizes that representations of ‘mad women’ and their places in society and space involve contradictory, tension-laden relationships between spectator and cultural product, complex discursive negotiations of meaning, and gendered processes of meaning-making, in some ways affirming mad women's lives and in others perpetuating negative stereotypes about women with mental illness and where they belong.

Disability and the Self-Reliant Family: Revisiting the Literature on Parents with Disabilities

An estimated 8.4 million adults with disabilities have children under age 18 living with them. Despite the large number of adults with disabilities engaged in parenting, studies of parents with disabilities have been relatively scarce, though the number is growing. This article reviews the literature on parents with disabilities as a whole and elaborates three themes relevant to parental support and care: parental capacity, “young carers,” and social networks. Also discussed are key concepts from the feminist and disability studies literature that can form the basis for a theoretical framework to guide research on parents with disabilities.

Adult Education and Disability Studies, an Interdisciplinary Relationship: Research Implications for Adult Education

Disability studies is an emerging field of inquiry that investigates the disability experience as a socially constructed phenomenon similar to issues of race, gender, and class. However, the literature of adult education shows that we are not making these same connections. Nor are we conducting a thorough investigation of how the manifestations of the disability experience affect and/or constrain the adult learning context. This article promotes the idea of an interdisciplinary relationship between adult education and disability studies as a way to investigate the disability experience within the adult learning context. An overview of adult education and disability is provided first, along with a review of the disability studies literature, its history, tenets, and critiques. Embedded within this discussion are suggested implications for adult education practice and theory. The author concludes her discussion with possible ideas for research that she argues will create new lines of inquiry within adult education.

Disability, work, and welfare

This article engages with debates relating to social policy and disabled people’s exclusion from the British labour market. Drawing on recent developments from within the disabled people’s movement, in particular, the concept of independent living and the social model of disability, and the associated disability studies literature, a critical evaluation of orthodox sociological theories of work, unemployment, and under-employment in relation to disabled people’s exclusion from the workplace is provided. It is argued that hitherto, analyses of work and disability have failed to address in sufficient depth or breadth the various social and environmental barriers that confront disabled people. It is suggested therefore that a reconfiguration of the meaning of work for disabled people - drawing on and commensurate with disabled people’s perspectives as expressed by the philosophy of independent living - and a social model analysis of their oppression is needed and long overdue.

Pushing Forward: Disability, Basketball, and Me

Wheelchair basketball offers an ethnographic space through which this article connects a familial story of survival to the author’s evolving engagement with disability. The author has been looking for role models, for people who might offer guidance to help his family cope with his daughter’s disability. The story of Melvin Juette, a Chicago gang member turned world-class wheelchair athlete, was the inspiration for embarking on a research project about wheelchair sports. Melvin’s perseverance in the face of adversity illustrates the dynamic interface between agency and structure and suggests a way to move beyond the “supercrip” critique that is prevalent in the disability studies literature. Melvin’s story and others like his have emboldened the author and helped him to view social difference as enabling rather than as disabling.

Impairment, Disability, and Loss: Reassessing the Rejection of Loss

Psychological theories of loss and grief, which suggest that people must go through stages such as shock, anger, denial, and despair before finally reaching a recovered stage of acceptance, have often been applied to understanding the experience of disability. However, this has also been firmly rejected within the U.K. disability studies literature, which draws on the experience of disabled people from a critical perspective. The result is not just a rejection of ways of understanding loss but a high level of caution in exploring disability from a psychological perspective. This article explores these debates and then considers if more recent theorizing about loss and grief has in any way addressed these criticisms. The disenfranchised grief, dual process, and meaning reconstruction models are each considered and questions are raised about their potential to contribute to disability studies.

Disability, facilitated sex and the role of the nurse.

The aim of this paper is to explore the role that nurses can play in acknowledging and facilitating the sexual needs of disabled patients within an holistic framework of nursing care. Contemporary nursing claims to offer patient care within an holistic framework; this framework should encompass the biopsychosocial needs of patients, as defined by patients themselves. In spite of the importance of sexuality and sexual expression to the psychosocial welfare of patients, sexuality is often excluded from nursing practice. Literature is reviewed from nursing, disability studies, and a variety of social science disciplines. The paper begins with a discussion of the concept of 'holistic care' and the ways in which this has been interpreted in the nursing literature. The biopsychosocial approach and the notion of 'whole person' holism seem particularly significant, although the lack of attention to patient sexuality is identified. Literature from the social sciences is used to explore the significance of sexuality to individual self-identity and psychosocial welfare. This literature also highlights the way in which the denial of sexual identity is a significant feature of power relations. The disability studies literature catalogues the way in which disabled people are generally infantilized by society and perceived as asexual. This literature also highlights the professional neglect of disabled sexual identities. Using a variety of literature, the concept of facilitated sex is explored as a continuum of activities and the role of nursing, within a holistic framework, is examined. The paper concludes by arguing that an holistic approach to nursing care should include an appreciation of patient sexuality. In particular, it suggests that nurses can play an important role along the continuum of facilitated sex.

Seeing the Invisible Children and Young People Affected by Disability

This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.

Blindness Prevention in Mali:Are Improvements in Sight?

International public health policy for the prevention of disability is premised on the homogenizing stance that there is a universal, static conceptualization and experience of disability. A review of key debates in disability studies literature illustrates the extent to which subject formations, including the notion of the Disabled person, are shaped by social, cultural, political, and historical contexts. Research on blindness prevention in Mali is then presented as a case study of the lack of fit between WHO and local definitions of disability. In addition to engaging with disability studies scholarship, this article is also a response to the call made by medical anthropologists to think critically about the relationship between poverty and health inequalities.