Dis/entangling critical disability studies

Recently there has been discussion about the emergence of critical disability studies. In this paper I provide an inevitably partial and selective account of this trans-disciplinary space through reference to a number of emerging insights, including theorizing through materialism, bodies that matter, inter/trans-sectionality, global disability studies, and self and Other. I briefly disentangle these themes and suggest that while we may well start with disability, we often never end with it as we engage with other transformative arenas including feminist, critical race and queer theories. Yet critical disability studies reminds us of the centrality of disability when we consider the politics of life itself. In this sense, then, disability becomes entangled with other forms of oppression and revolutionary responses.     

Moral wrongs,disadvantages, and disability: a critique of critical disability studies

Critical disability studies (CDS) has emerged as an approach to the study of disability over the last decade or so and has sought to present a challenge to the predominantly materialist line found in the more conventional disability studies approaches. In much the same way that the original development of the social model resulted in a necessary correction to the overly individualized accounts of disability that prevailed in much of the interpretive accounts which then dominated medical sociology, so too has CDS challenged the materialist line of disability studies. In this paper we review the ideas behind this development and analyse and critique some of its key ideas. The paper starts with a brief overview of the main theorists and approaches contained within CDS and then moves on to normative issues; namely, to the ethical and political applicability of CDS.     

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.     

Verification of Self Using a Mathematical Theory of Identity,Feeling, and Behavior

The current study tests the affect control theory of self, a mathematical theory that demonstrates a core social psychological principle: individuals strive for a stable and coherent self through identity selection and behavior. In the affect control theory of self, the self is conceptualized as self‐sentiments, which are measured on three dimensions: evaluation (good/bad), potency (powerful/powerless), and activity (fast/slow). In a longitudinal sample of college men and women, I find the self‐sentiment predicts how individuals describe themselves on a range of terms, including primary emotions and both stigmatized and esteemed traits related to mental illness and self‐esteem. It also predicts various productive and deviant behaviors five months later. Thus, the current study demonstrates the theoretical precision of the theory, its ability for understanding human behavior, and its potential for identifying at‐risk individuals.     

The emancipation of disability studies in Portugal

Despite the interest of the social sciences in issues of exclusion and inequality, the question of disability, as a key issue of reflection, remains absent from many academic areas. The emergence of disability studies owes much to contexts in which the activism of disabled people has revealed the structural conditions that oppress and neglect experiences of disability. Bearing in mind the specific features of the Portuguese socio-political environment, two lines of inquiry are developed in this text. Firstly, what are the challenges faced by Portuguese academics in making disability a central issue, enabling it to confront the silencing of the voices and experiences of disabled people in society? Secondly, how important is it for research to engage with an ethical and political paradigm that supports the rights of disabled people?     

Enabling everything: scale,disability and the film The Theory of Everything

This article looks at the representation of scale in the 2014 film The Theory of Everything, identifying moments that relate to three concerns: firstly, how disabled people experience scale issues at an all too practical level in daily life; secondly, how Hawking’s experience of scale at the level of both body and mind is (a)typical of the way it is experienced by disabled people generally; and, thirdly, how a focus on the film can prompt some rethinking of perspectives both within disability studies and within the conceptualisation of scale more broadly.     

Repositioning mothers: mothers,disabled children and disability studies

In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and yet the consequences and outcomes of these experiences, such as developing a ‘special competence’ is largely overlooked. Mothers can work to effect change on behalf of their children and, in some cases, for disabled people more generally, however, this role of activist mother is largely undervalued. The review of literature presented here leads us to conclude that further research needs to be undertaken exploring and highlighting the ways in which mothers of disabled children negotiate, manage and approach their daily lives, operating within what are described by feminist scholars as oppressive mothering ideologies and disabling environments.     

Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.     

Disrupting global disability frameworks: settler-colonialism and the geopolitics of disability in Palestine/Israel

In recent years, Israel has seen an increase in disability studies scholarship and disability rights activism. At the same time, critical disability studies scholars have begun calling attention to the role of colonization and neocolonial powers, too often obscured in disability studies work, in disabling oppressed nations. This article brings these critiques in conversation with disability studies scholarship regarding Occupied Palestine to argue that disability is inextricably intertwined with the settler-colonial project of the Israeli state. By highlighting the geopolitical production of disablement, this work suggests that social approaches to disability have largely effaced disability injustice rooted in geopolitical power imbalances.     

Narrative and its potential contribution to disability studies

This article seeks to expand our understanding of narrative and the analysis of stories researchers invite and collect in the domain of disability studies. What narrative inquiry is and various reasons why researchers might opt to choose to turn to narratives are highlighted. Painting with broad strokes, narrative analysis is then considered before a typology of different ways in which stories can be analysed is offered. Illuminated by the typology are two contrasting standpoints on narrative analysis (storyteller and story analyst) and three specific methods (structural, performative, and autoethnographic creative analytic practices) that each standpoint might use to analyse the whats and hows of stories. The article closes by suggesting that researchers might consider using a variety of analyses in order to assist us to understand the complexities of the social world in diverse ways.     

Citation analysis and discoverability: a critical challenge for disability studies

Disability is an identity, a culture/community/cause/power struggle; a rights movement demanding civil, ethical, political and social positions at tables of power, equality and social justice. This perspective forms the core of changes in the past 50 years in legal, social and political arenas that have taken place and is essential to understanding the growth, depth and nature of Disability Studies as a separate and legitimate field of inquiry. This study focuses primarily on studying the evolving literature in the core aspects of Disability Studies, using citation and text analyses to study trends in publishing patterns and the field’s impact on the wider academic enterprise. Lack of thorough indexing to key journals made traditional citation analysis impossible, leading to the use of dissertations as a means to tease out useful information on the state of Disability Studies today. The most significant finding of the study is the lack of adequate indexing of key journals in standard scholarly databases, which can only limit the potential development of both the field and its impact/influence on related disciplines and professions. The study also found the significant role that dissertations can play in tracking new research directions.     

In search of disability rights: citizenship and Turkish disability organizations

Criticizing modern citizenship’s emphasis on the ‘nation’ as a homogeneous body of citizens, recent citizenship conceptions draw attention to diverse group identities and their differentiated rights‐claims. By way of scrutinizing different disability organizations, this paper analyzes the struggles by people with disabilities in Turkey and examines whether these could be perceived as claims to new forms of citizenship. It argues that due to the institutional, political, cultural and historical specificities of Turkey, most non‐governmental organizations maintain relations of patronage with state actors. Far from initiating a rights‐based discourse, their activities cannot be perceived within recent citizenship frameworks. Yet, parallel to Turkey’s accession process to the EU and technological developments, alternative forms of organizing started emerging at the virtual level. These are the harbingers of a relatively more rights‐based discourse.     

Facilitated communication,Anna Stubblefield and disability studies

This article discusses the case of Anna Stubblefield, a US disability studies scholar and Professor of Ethics at Rutgers University who was sentenced to 12 years in prison for sexually assaulting a disabled man. Stubblefield claimed that he consented, using facilitated communication. The article argues that facilitated communication is unscientific and unreliable, and that the support for Stubblefield from some disability studies scholars raises serious ethical concerns.     

Ethical challenges of life story research with ex‐prisoners with intellectual disability

This paper outlines the ethical considerations when engaging in life story research with ex‐prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle‐based ethics. The significant disadvantage experienced by ex‐prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle‐based approach.     

Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflexive ethnography

A gap exists between research and practice within the field of intellectual disability. In particular, researchers suggest that personal choice enhances quality of life. Following Bourdieu's suggestion to focus on improving the practice of theory rather than the theory of practice, this paper is a reflexive ethnography detailing my struggles to provide choice to an individual who, it turned out, cannot think in the ways necessary to make choices that would improve his subjective quality of life. A narrative is included with the hope of revealing social processes outside and within the field of intellectual disability and to provoke discussion regarding problems with choice and quality of life in the field.     

When identities collide: masculinity,disability and race

This study is part of a larger project that examined the impact of violently acquired spinal cord injuries (VASCI) on identity among racial and ethnic minority men living in a major American metropolis. Like other individuals who sustain a disabling injury, individuals with a VASCI often struggle with the consequences of the injury vis‐à‐vis redefining their identities and their role in society. For the men in this study the negative association between disability and dependency affected the integration of the injury into their sense of self. The injury and resulting disability violated social understandings of what it means to be a man in their environments. The men noted the injury’s impact on their sense of safety, sexual encounters, body image and choice of intimate partners. Their social context shaped what it meant to be a man, played a role in their injuries and increased the challenges inherent in a life‐changing event.     

Intellectual disability and faith communities: perspectives of Catholic religious leaders

Faith communities create community and are important to many individuals with intellectual disability. However, relatively little is known about how intellectual disability is construed among faith leaders and the inclusion of people with intellectual disability in faith communities. To address these gaps in knowledge, we interviewed 12 Catholic priests, parochial vicars, and deacons to explore: their experiences with individuals with intellectual disability; their beliefs towards the involvement of individuals with intellectual disability within faith communities; and how religion informs their understanding of intellectual disability. We identified five religiously-anchored narratives of intellectual disability, and explore implications for individuals with intellectual disability and faith communities.     

In search of disability: a critical discourse analysis of a Key Stage 1 guided reading scheme

This paper employs critical discourse analysis to examine the representation of disability in the children’s Oxford Reading Tree Series Read with Biff, Chip and Kipper. The representation is found to influence self-identity and social attitudes towards disability, for it grants ‘normalcy’ a status of idolatry. Such elevation of normalcy elicits ‘normate’ culture, which, in turn, can generate ‘aesthetic nervousness’. This hegemonic tradition therefore produces a replicative process that is consequential to the production of future texts, social justice and an inclusive society.     

Embodying and enacting disability as siblings: experiencing disability in relationships between young adult siblings with and without disabilities

Abstract

Where one sibling has a disability, research has examined the role of disability in sibling relationships; however, the majority has reflected a normative understanding of sibling relationships and a deficit understanding of disability. Reacting to this history, this paper draws on the concepts of embodiment (absorption of bodily experience into self/identity) and enactment (performance of self/identity) to provide a new way of understanding the role of disability in sibling relationships. Using data from an Australian study of young adult siblings with and without disabilities, the paper discusses how disability is embodied and enacted in: how siblings engage in supportive and conflictual talk and everyday chat with each other; how they enact recreation and seek connection with each other; and how they strive to understand and experience their emotions about each other. The paper ends by discussing how embodiment and enactment allow a clearer understanding of disability in sibling relationships, which may be empowering for siblings.     

Experiences of Grandparenting Disabled Children in the UK: A Qualitative Study of Intergenerational Relationships

Contemporary patterns of family, work, and welfare make the experience of grandparenting complex and diverse. This UK-based qualitative study aimed to explore grandparenting in the context of childhood disability. Nine grandparents (aged 59–79 years) with disabled and non-disabled grandchildren took part in semi-structured interviews. Grandparents provided extensive instrumental and emotional care and support and sought a balance between involvement versus interfering. Grandparents actively drew on life experiences to engage with services to maximize support. Contemplating the future, grandparents had concerns for adult children as well as grandchildren. Developing policies to support grandparents of disabled grandchildren are urgently required.