Personal Independence Payments,welfare reform and the shrinking disability category

The question of who counts and how we construct just who can ‘be disabled’ is central to our concerns in disability studies. As Stone makes clear, disability is exactly what a state deems it to be; the very malleable nature of the category has been exploited to widen or more commonly to narrow just who counts as disabled. This article will apply and adapt Stone’s thesis to current plans to revise the Personal Independence Payment extra costs benefit. Using official and disabled people’s narratives, the article will make clear the force with which new definitions of disability are being put forward. This process arguably risks doing state violence to a number of disabled people. These reforms have also used the language of independence in a way that fundamentally distorts the origins and potential of the term in an enabling society.     

Physically disabled women and sexual identity: a PhotoVoice study

The issue of sexuality for young disabled women is not often talked about in society. Our study aimed to explore four young physically disabled women’s experiences and perspectives regarding sexuality and disability. We used PhotoVoice, a participatory action research method which uses photographs, to capture and convey our participants’ concerns. Through their photographs they showed that everyday interactions with others, particularly strangers or meeting people for the first time, were made difficult by how they were always seen as having a disability. Other parts of their identity were not recognised. The change the young women wanted was for people to see them as young women and not just as disabled.     

Explanatory models for disability: perspectives of health providers working in Malawi

Health providers’ understanding of disability determines how disabled people are treated, and hence it is imperative to address conceptualisations of disability, as this will contribute to better opportunities and realisation of human rights for disabled people. This article will use data from a qualitative study exploring conceptualisations of disability by 22 health service providers from the total health care system in Malawi, including the professional sector (e.g. medical doctors and nurses) and the folk sector (healers and indigenous practices). We will discuss how these perceptions influence the lives of disabled people, using the case of a health service user with physical and speech impairment as an example. Our data show that health providers largely conceptualise disability according to the medical model for disability, contributing to the exclusion of disabled people. The bio-psycho-social model for disability, largely absent as an explanatory model for disability among our informants, is the most inclusive and rights based.     

Siblings with disabilities: a duoethnography on the intersections between a sibling relationship and disability

A growing body of research examines the intersections between sibling relationships and disability. However, much of this research focuses on non-disabled siblings and how the disabled sibling affects them, thereby continuing to center able-bodiedness and able-mindedness while further marginalizing disabled people. This research centers the voices of two siblings who are both disabled. Using duoethnography, the researchers engaged in a dialog interrogating how disability has played a role in our sibling relationship. Our dialog demonstrated the complexity of our experiences as siblings and as disabled people. We found that physical disability, a status we do not share, created role asymmetry and power differentials in our relationship. Conversely, we discussed how our shared experience of having psychiatric disabilities had a positive influence on our closeness, and enhanced our ability to provide mutual support and engage in reciprocity. This duoethnography has important implications for the inclusion of disabled siblings in future research.     

Disability and the promises of technology: Technology, subjectivity and embodiment within an order of the normal

The topic of this article is the promises of technology for disabled people. The starting point is that disabled is not something one is but something one becomes, and, further, that disability is enacted and ordered in situated and quite specific ways. The question, then, is how people become, and are made, disabled - and, in particular, what role technologies and other material arrangements play in enabling and or disabling interactions. Drawing on a study of the uses of new technologies in the lives of disabled people in Norway, and recent work in disability studies as well as social studies of science and technology, this article explores precisely what positions and capacities are enabled; how these are made possible in practice; the specific configuration of subjectivity, embodiment and disability that emerges; and the limits to this mode of ordering disability and its technologies. The argument is that in this context the mobilization of new technologies works to build an order of the normal and turn disabled people into competent normal subjects. However, this strategy based on compensation achieves its goals only at a very high price: by continuing to reproduce boundaries between abled and disabled, and normal and deviant, which constitute some people as disabled in the first place. There are thus limits to normalization. And so, notwithstanding their generative and transformative power, technologies working within an order of the normal are implicated in the (re)production of the asymmetries that they and it seek to undo.     

Disability activism in the new media ecology: campaigning strategies in the digital era

This article examines the changing nature of disability activism through the influence of social media. As disabled people in the United Kingdom have been subjected to acute austerity, this has coincided with a new era of disability activism channelled through increased social media participation. Drawing on the analysis of one group’s online activities and a qualitative content analysis of disability protest coverage in traditional news media during the 2012 Paralympic Games, this article positions this shift in the broader framework of ‘new media ecology’. We explore how emerging structures of disability activism have begun to offer a more visible profile to challenge government policy and negative stereotypes of disabled people. This highlights the usefulness of campaigning strategies for generating favourable news coverage for disability protest.     

Named social workers – better social work for learning disabled people?

In 2016, the Department of Health in England announced that it would pilot the role of Named Social Worker. We chose to be part of the pilot because we regularly witness too many people’s lives being defined by restrictions imposed by professionals. Erroneous associations between the concepts of risk and danger have become the norm in how learning disabled people’s decision-making is perceived and managed. However, we believe social workers educated in the social model of disability and grounded more generally in disability studies offer an alternative perspective. The pilot is an opportunity to test our hypothesis that social work practice rooted in social model thinking can successfully challenge oppressive practice and disabling barriers, thus providing the opportunity for social workers to genuinely be ‘servants not masters’ in the lives of disabled people.     

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?     

When they call me cripple: a group of South African adolescents with cerebral palsy attending a special needs school talk about being disabled

Central to the experience of disability are social and political forces and discourses which position people in particular ways. Little is known about the experiences of individuals with disabilities living in low-income and middle-income countries. We investigate the lived experience of a group of South African adolescents with cerebral palsy. In-depth interviews were conducted with 15 adolescents with cerebral palsy. Data were analysed using interpretive phenomenological analysis. The participants position themselves between the medical and social models of disability, in a liminal space between ‘normal’ and ‘disabled’, but do not identify with either group. They describe a ‘hierarchy of disability’ and position themselves in-between more serious sensory impairments and less serious emotional and learning disabilities. Being disabled is associated with being taken care of, infantilised and being powerless. Consequently they aspire to achieve independence and autonomy, and face danger, which are seen as signifiers that they are not disabled.     

The empowerment of marginals: strategic paradoxes

This article is about the disability movement in the Netherlands and its strategies for empowerment of disabled people. Only since the end of 2003 has the Netherlands enjoyed anti‐discrimination legislation for disabled people. But, how important actually is legislation for the empowerment of disabled people? To answer this question, we take a closer look at social movements and their involvement in empowerment and active citizenship. We criticise the disregard of differences and care in notions of active citizenship and propose instead the idea of a ‘varied society’ based on the notions of diverse and ‘careful citizenship’. One of our main arguments is that empowerment strategies necessary to create this kind of society are above all bottom‐up strategies. However, the highly organised disability movement in the Netherlands is confronted with strategic paradoxes that have ‘de‐powering’ consequences. Based on these paradoxes, five recommendations for the disability movement in the Netherlands are presented.     

ON BECOMING DISABLED AND ARTICULATING ALTERNATIVES

The topic of this article is the ordering of disability. The question is how people become, and are made, disabled. This is linked with a further question about how to investigate and represent differences such as those between ability and disability. How can studies that aim to contribute to opening up and remaking the conditions of possibility for disability avoid reproducing the same differences and distributions of power and agency? Indeed, disability studies have contributed to denaturalizing ability as well as disability. Many of these studies owe much to genealogical approaches focusing on the descent, regulation, and generative power of discourse. But then the problematic inference is drawn that this discourse imposes itself to order how people perceive and think, materializes in bodies and practices, and does so in a coherent manner. The objective in this article is to pursue a different approach that investigates ordering in practice, brings out the existing alternatives and explores the possibilities for articulating these. For this endeavour, the author mobilizes a specific strand of Foucauldian work and reworkings of it in science and technology studies. Drawing on a study of life after road traffic accidents in Norway, this article explores the following: how disability becomes enacted in everyday practices; the character of the modes of ordering that emerge in these practices; how this ordering is achieved; and the nature of the relations and interferences between these ways of becoming disabled. The argument is that in practice people slip and move between multiple modes of ordering that co-exist, are partially related in complex ways, and even folded into each other. Finally, the article considers the relation between openness and multiplicity – and their study – in view of possibilities for articulating alternatives.     

Organizing survival and resistance in austere times: shifting disability activism and care politics in Ontario,Canada

Following the 2008 financial crisis, all levels of Canadian government implemented austerity measures that dramatically restructured welfare, employment, and social service infrastructures. This has significantly affected how disabled people access services. We argue that this restructuring has been an impetus for new forms of disability activism and care politics in Ontario as disabled people fight for services necessary for survival. We discuss examples of politicized forms of care and resistance in Ontario, namely self-care, the Ontario Direct Funding programme, and collective forms of care. We contend that while these examples of care can be practical modes of resistance, they can all be co-opted and restructured to suit neoliberal ideologies and must therefore be continually interrogated.     

Research initiation based on idea-circles: from research object to co-actor

This article details an evaluation of a research project based on participatory research methods organized by the Swedish Disability Federation from 2008 to 2011. In Sweden there has been a lack of productive dialogue with the traditional academic world and the question was raised whether proposals for future research would be different if disabled people formulated them. Nine idea-circles with disabled participants and invited researchers from fields of interest close to the participants produced ideas, developed out of the life experience of being a disabled person. These ideas were developed into 72 research drafts that often reflected key advocacy areas, rather than operationalized research issues. The adjustment from the familiar discourse of political struggle to discussion of research was a complicated process for many. When asked to prioritize among areas for research, the representatives from the disability movement chose areas that are not stressed in mainstream disability research in Sweden.     

Pushing the boundaries of our understanding of disability and violence: voices from the Global South (Guyana)

Our knowledge about disabled people’s lives is largely based on research in the Global North. This article considers disability and violence in the Global South, specifically in Guyana. It aims to push conceptual and empirical boundaries of our understanding of violence and disability. Conceptually, it argues for a social model materialist theory of disability attuned to how material barriers to disabled people’s inclusion in society and space are reproduced through processes of exclusion unfolding across geographic scales ranging from the global, to the inter-personal and intra-personal. It argues that Lacanian psycho-analytic theory provides a complimentary lens for understanding why people engage in acts that construct disabled people as ‘deserving’ of violence. Empirically, the article broadens our understanding of disability and violence by focusing on poverty, violence as a cause of impairment and disability, and disabled women’s and men’s experiences of violence in a majority world context.     

Fatness as a disability: questions of personal and group identity

Both fat people and disabled people share common barriers to full societal participation and acceptance. While there has been a substantial amount of literature relating to these two groups as separate entities, there is a lack of contemporary research that investigates the relationship between fat and disability identity formation. The purpose of this qualitative study was to engage in a dialogue with fat individuals and explore the construction of their identities – whether or not they identified with having a disability and, if so, whether or not they viewed their fatness as a disability. Interviews with a sample size of seven participants who self‐identified as ‘fat’ revealed an unwillingness to adopt a disability identity based on their fatness.     

We did it together: a participatory action research study on poverty and disability

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.     

WORDLESS PAIN

Current health care discussions often deal with issues such as self-determination, consumer orientation, civil rights and choices for patients and people with disabilities. Other experiences of illness and disability, such as pain and suffering are often avoided in these discussions because these expressions seem to confirm the public prejudice of tragic victimhood of people with disabilities. Various scholars have sought to reintroduce the enactment of the sick and disabled body into the discourses around disability. This essay is a part of that endeavour. Drawing on ethnographic fieldwork from a centre for physical rehabilitation, this article questions the idea that suffering turns people into passive victims of their bodies. By articulating the ways in which participants deal with suffering during the day-to-day activities of rehabilitation practice, the paper seeks to demonstrate that people do not passively sink into their suffering, but actively deal with it in the multiple settings and conditions of their embodied living. Three different ways in which rehabilitation participants deal with suffering will be unravelled. First, suffering is translated in the sense that it is transformed and transferred. Second, people actively manage their situation and balance different kinds of misery. Finally, people create a space where suffering is allowed to exist.     

‘Now I’d like to sleep with Rachael’ – researching sexuality support in a service agency group home

Many intellectually disabled people living in agency services require significant forms of support to live safe and satisfying sexual lives. Research reveals that despite support personnel working in service systems now holding largely positive attitudes towards sexuality assistance, proactive practice is rarely initiated. This article probes what might lie within this attitude/assistance gap. This investigation reveals a complex picture of practices that rely on intellectually disabled people showing conformation to a ‘couple doing normal’ ideal, so as to be judged capable of being supported. It examines how wider social locations of meaning related to ‘intellectual disability’ and ‘sexuality’ might substantiate these judgement calls. The degree to which it can be said that worker’s own attitudes and values underpin their reluctance to provide support is then explored. Finally, why researchers and practitioners might need to reappraise the complex interactions that shape worker’s practice in this area is discussed.     

Application of the International classification of functioning,disability and health in Taiwan: victory of the medical model

Since July 2012, eligibility for disability benefits and services in Taiwan has been assessed based on the International Classification of Functioning, Disability and Health. This study examines disabled people’s experiences of this new assessment system: does it incorporate the social model or a multidimensional understanding of disability and assess the needs of disabled people adequately? In-depth interviews were employed with 24 disabled persons to answer these questions from the perspective of disabled people. The findings show that the new assessment model is still medicalised: social roles and social participation are not considered, the assessment process is dominated by professionals, users’ perspectives are not included and only those who are assessed to have a high level of disability are satisfied with the new system while many others would prefer the old assessment system. These findings have relevance for the analysis of needs assessments of disabled people in different countries.     

Sustainable lifestyles for all? Disability equality,sustainability and the limitations of current UK policy

In recent years, various environmental threats have been highlighted in relation to disability. Growing knowledge of the effects of climate change and particular impacts on disabled people have been highlighted by a number of authors, including a recent critique of disabled people’s ‘vulnerability’ with respect to environmental hazard. This article focuses on the issue of citizen involvement with climate change mitigation – and more broadly individual and household-level efforts to reduce our impact on the environment. These more mundane aspects of climate change mitigation, for example through transitions to more sustainable lifestyles, also have significant implications for disabled people. The article argues that disability equality is a key component of sustainability. Limitations are demonstrated in policy designed to address these issues using the example of current UK policy, and it is suggested that policy approaches to sustainability should also be a concern of disability studies.