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.     

Saying the ‘F word … in the nicest possible way’: augmentative communication and discourses of disability

This paper examines a case study of a severely physically disabled man, Ralph, in terms of his interaction with his carers. He communicates using various systems of augmentative and alternative communication (AAC, such as symbol boards and high-tech devices), the vocabulary for which has mostly been selected for him by others. The starting point of the paper is the assumption that disabled people have traditionally held a disempowered position in society (relative to non-disabled people), and the question asked is to what extent is Ralph further disempowered by the limited vocabulary available to him in his AAC systems, and in the way others interact with him. The paper draws on the work of Bourdieu, according to whom ‘Language is not only an instrument of communication or even of knowledge, but also an instrument of power’ (1977, 648). I consider the tensions between the drive towards the empowerment of disabled individuals, as exemplified by the provision of AAC, and opposition to allowing access to certain types of vocabulary (especially expletives such as ‘the F word’), unless it is expressed in ‘the nicest possible way’.     

Orientating disability studies to disablist austerity: applying Fraser’s insights

Many disabled people in Britain have experienced profound challenges brought about by a government policy programme characterised by ‘austerity’. Drawing on the work of Fraser and Polanyi, this article explores new ways in which disability studies can become theoretically orientated to the task of explaining and challenging what has become an issue of overbearing importance for many disabled people. It is argued that Fraser’s notion of bivalency encapsulates the combination of cultural and economic challenges which characterise ‘disablist austerity’. Fraser’s development of Polanyi’s work is used to argue that disability studies should be orientated to large-scale economic challenges as well as cultural and discursive concerns that are more often the object of study in the field.     

Disability,politics and poverty in a majority world context

This paper argues that the spread of free market economics throughout the world has generated unprecedented inequalities within and between nation states. This has led to the systematic exclusion of people with perceived impairments from the mainstream of economic and community life in almost all societies, the generation of an international disabled people’s movement, and their demand for legal frameworks with which to address the multiple deprivations encountered by people viewed as ‘disabled’. It is argued that the poverty and exclusion encountered by disabled people and other oppressed groups in all societies will not be eliminated without fundamental structural change at the international level.     

Children’s conceptions of the word ‘disabled’: a phenomenographic study

The aim of this study was to investigate the qualitative differences in children’s conceptions of the word ‘disabled’. Two hundred and thirty children, aged 7–12 years of age, were instructed to make a drawing of what came into their minds when they heard the word ‘disabled’. A brief written commentary on their drawing was also requested. The drawings and comments showed that the children had a positive attitude towards the word ‘disabled’. They drew and commented that a disability had medical causes, a technical device was a prerequisite for disabled people, a disability had social consequences and that a disabled person needed support. The children also explained that there were obstacles which impaired disabled people’s performance of activities. Access to some environments and being an active part of society was limited for some disabled people.     

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.     

Do self‐assessment and self‐directed support undermine traditional social work with disabled people?

In recent years, self‐assessment and self‐directed support have become mainstream options within disability services. The Disabled People’s Movement has advocated the need for such change for a long time but this has been persistently resisted by many social workers. In this article, it will be argued that both self‐assessment and self‐directed support undermine traditional social work and that social workers need to begin to work alongside disabled people, rather than ‘for’ disabled people, in order to achieve substantial system change.     

Independent living: the frontier of communitarian welfare? 1

We hear so much about the ‘cost’ of care, today;and so little about the value society places upon ‘care’ and welfare, which, in turn, can promote economic, social and civic participation within society at large. The question of what should be supported and valued in contemporary society needs exploring critically. In the following I explore three well-established responses to the question of how society should support and deal with disadvantage. I argue that communitarian politics/thought and the independent living movement have key roles to play in forging a better society for disabled people.     

Representations of vulnerability,innocence and evil in the murder of a disabled person

Abstract

This article uses the murder of a young man with learning disabilities as a case study to comment on the representations used in the reporting of crime against disabled people. It uses social representations theory as a theoretical lens to assist us to see that portrayals of both victim and perpetrators by the media and others serves to distance them from each other, and from mainstream society. It highlights how this process of ‘othering’ serves to disadvantage disabled people and places a disproportionate emphasis on individual characteristics.     

Integration versus segregation: the experiences of a group of disabled students moving from mainstream school into special needs further education

Although the latest education policy for disabled students is one of inclusion, some students are moving out of mainstream schools into specialist colleges for their further education. This research uses a combination of group and individual interviews to explore why this move away from mainstream education is made. Results show that these students' moved into specialist education because of the inadequate physical accessibility of their mainstream colleges, the quality of disability services available to them and their previous experiences whilst in mainstream school. These students were able to identify both strengths and weaknesses within mainstream and special education for disabled students, and believed that educational placement should therefore be a matter of choice depending on the physical, academic and emotional needs of the individual. It would appear, however, that for the students participating in this research, their local mainstream colleges were unable to cater for their needs, indicating that their decision to move into a special needs college was not based on a real choice. Mainstream colleges are challenged to create a truly inclusive environment so that disabled students are offered a real choice.     

‘A frog in a well’: the exclusion of disabled people from work in Cambodia

Based on ethnographic research conducted in north‐west Cambodia in 2000–2001, this paper examines why disabled people experience systematic marginalisation in the labour market. Although there are no official data on the relationship between disability and employment status in Cambodia, this research suggests that disabled people are more likely than their able‐bodied counterparts to be unemployed, in low status occupations, earn less or be out of the labour market altogether. Consequently, disabled people are more likely to live in poverty, experience social isolation and poor mental health. I argue that disabled people’s social status effectively shapes their work patterns through (mis)conceptions that associate ‘disability’ with ‘inability’ to work and to be employable. This paper illustrates how geographical processes fix disabled people in their socio‐spatial place, which together with ideological and structural inequalities distinguish and entrench their poverty from that of other social groups.     

Korean disabled artists’ experiences of creativity and the environmental barriers they face

This study explores the essence of disabled artists’ creative endeavours and investigates what constitutes the environmental barriers that hinder their creative activities. For the research 12 disabled artists were chosen from a list of renowned disabled artists. The study found that creativity is the same for both disabled people and non-disabled people, but for disabled people their surroundings often make it difficult for them to establish their identities. These findings clearly illustrate that the empowerment of disabled artists through art education is crucial. They also show that social attitudes toward disability need to change, since negative views regarding disability art are underpinned by negative views of disabled people. In addition, relevant policies to advance disability art should be instituted and supportive measures to solve the financial problems faced by disabled artists must be taken.     

Us and them: the influence of discourses of nationalism on media coverage of the Paralympics

Recent research suggests that the mainstream media representation of disabled athletes increasingly fits within the ‘norms’ of sports reporting. This study interrogates this suggestion, using the theoretical tools of cultural studies to compare representations of athletes from ‘our’ nation with athletes from other countries. The results suggest the change may be related primarily to athletes who can be constructed as being more like ‘Us’ through their national affiliation rather than to a revolution in how journalists see disability sport. For those focused on creating progressive images of disability (such as increasing the visibility, depth and complexity of reporting), this finding may offer a way forward. Through understanding the conditions under which athletes might become publicly visible, disability sport organizations gain tools that may enhance their promotional activities.     

Getting to know reality and breaking stereotypes: the experience of two generations of working disabled women

This paper sets out the results of a Spanish study of the experience and meaning of work among disabled women of two generations, with three types of disability (physical, visual and hearing). Performing a socially recognised activity such as a job is a source of emotional welfare and self‐esteem. Moreover, it confers a certain social status. For the participants in this study the kind of work involved, whether productive, paid and ‘extra‐domestic’ or ‘reproductive’, unpaid and done at home, acquires different meanings, since for disabled women, sexist stereotypes – already more or less accentuated in the culture – social attitudes towards disability and personal factors introduce relevant differences, while leading to conflicts and dilemmas that these women have to solve. At any rate, their sense of responsibility in performing all types of work should be emphasised as evidence of their sense of independence and personal competence, forming a keystone in their construction of a sense of identity and social integration.     

Independence and effectiveness: Messages from the role of Independent Reviewing Officers in England

This paper draws on research into the role of Independent Reviewing Officers (IROs) in England, exploring the dimensions and challenges of their ‘independence’. IROs are specialist social workers whose function is to review the cases of children in public care and ensure that they have appropriate plans and that these plans are being implemented in a timely manner. IROs are ‘independent’ in the sense that they are not the social worker to whom a child's case is allocated, and do not have line management responsibility for the case, however they are employed by the same local authority. There are detailed regulations and government guidelines on their role, and high expectations, but what does independence mean in this context? The paper draws on a mixed methods study conducted by the authors in 2012–14, which included a survey of 122 files of children in care from four local authorities; interviews with 54 social workers, 54 IROs, 15 parents, and 15 young people; six focus groups; and nationally-distributed questionnaires for IROs (65), social work managers (46) and children's guardians (39). The study found five dimensions of independence: professional, operational, perceived, institutional and effective. The IROs and social workers generally took more nuanced and pragmatic approaches to their inter-professional working than prescribed in the policy guidance or the pronouncements of politicians and judges, seeing this as more likely to be effective. IROs are not, and cannot be, the solution to all the problems that exist in services for children in care, and the other professionals involved should not be seen as necessarily any less capable or committed to the best interests of the children. Rather, the IRO is part of an interactive system of checks and balances which, together, may increase the likelihood that professional judgement will be exercised effectively on the child's behalf.     

‘Resistance: Which Way the Future?’ A dual-screen installation related to the theme of disability and eugenics

This paper reports the part findings of an evaluation of a dual-screen installation entitled ‘Resistance: Which Way the Future?’ by the writer and director Liz Crow. Central to the installation is the experience of disabled people during the Holocaust period, the values underpinning this neglected period of history and how this relates to understanding the experiences of disabled people today. Simultaneously, this paper raises issue with a previous comment which suggested that disabled people and eugenics are a form of ‘emotive rhetoric’. On the contrary, this paper asserts that the link between eugenics and disability cannot be overstated, and is a significant moment in history where the lived experiences of disabled people – people described as having ‘learning difficulties’, surviving artefacts, and recorded testimonies – have still yet to be explored.     

Claiming loss in disability

Pervasive representations of disability carry associations with the idea of loss. These have been strongly rejected by the social model movement as stereotyping, which may perpetuate views of disabled people as ‘incomplete’, ‘vulnerable’ or needing rehabilitation. Discourses of ‘loss’, ‘acceptance’ and ‘denial’ remain a lens through which disabled persons are misknown. It is posited that ascribed notions of ‘loss’ serve to maintain feelings of control and mastery within the observer, quieting the destablising psychic threat which disability poses. Further, disabled people positioned as having to ‘deny’ imputed loss may be at risk of suffering self‐alienation relating to a mode of being which is (necessarily, understandably) preoccupied with ‘not being’ the personification of stereotype, at the expense of exploring aspects of identity and self; such an orientation embodies unstable foundations for an entitled, articulate disability movement. Conceptual ideas are based on the author’s experience as a disabled group psychotherapist working with severely physically impaired adults.     

Young,anchored and free? Examining the dynamics of early housing pathways in Australia

Young people are remaining in the parental home for longer, and returning there more often, before attaining residential independence. In Australia, these patterns have prompted concerns about a ‘boomerang generation’ whose housing aspirations and decisions have either been directly questioned, or viewed as symptomatic of broader affordability issues. Employing a longitudinal perspective, we argue that early residential pathways reflect a mix of stable and dynamic influences involving individuals, their families, and their broader relationships. Using data from a large cohort (n = 2082) of young Australians participating in the ‘Our Lives’ research project, we examine housing pathway formation between the ages of 12/13 and 21/22. Events such as parental union dissolution or partnership formation were found to encourage home leaving, whilst being employed at a younger age and having grown up rurally predicted both leaving and remaining out of home. Close, supportive relationships with family and friends served to ‘anchor’ respondents at home for longer, and parental socioeconomic resources enabled respondents to leave home and return if needed. The findings suggest that early residential independence reflects various factors, not all of which are in young people’s control, and some of which may hinder the longer term sustainability of their living arrangements.     

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.     

Neoliberal disorientations: changing landscapes of disability and governance in India

This article delves into questions of neoliberal disorientations experienced by disabled people in the context of a participatory development self-help group project from the World Bank in south India. I explore ways in which neoliberal development regimes produce exclusionary forms of inclusion by producing subjects who are ‘able-disabled’. I ethnographically examine ‘who gets counted’ and ‘what gets counted’ within the neoliberal governance framework, and what remains outside. Deconstructing participatory development approaches from a critical disability perspective, the article sheds light on processes of inclusion through exclusion in the neoliberal framework of governance. It highlights what is at stake for disability futures in the context of austerity in the Global South.