The additional cost of disability: a new measure and its application to sensory impairment

This article introduces a method using consensual budget standards to estimate additional costs incurred by households that include disabled people with specified impairments. The article reports on a first application of this to UK single adults with sensory impairments. Using the Minimum Income Standard method, the research aims to identify the cost of disability by working with groups of disabled people to agree what additions to minimum budgets for non-disabled people are required for someone with a given impairment. This provides a more tangible account of the cost of disability than economic analysis of living standards achieved by disabled and non-disabled people, and adds to surveys of actual spending on additional items, which do not account for unmet need. The research on vision and hearing impairment yields new insights into costs arising from the way disabled people live their everyday lives, not just from spending on adaptations and equipment.     

Disability, Ethnicity and Childhood: a critical review of research

Whilst there is an increasing body of literature on the perspectives of carers of disabled children, there is little research giving the disabled child's perspective from either majority or minority populations. Indeed, the voices of black and Asian children in disability research have been almost silent. This literature review collates and analyses existing knowledge about the perceptions held by disabled and non-disabled children, and young people from black and Asian families concerning issues of disability and impairment. The Disability Movement has long proclaimed its belief in the full participation and self-representation of all disabled people. However, despite this laudable objective, the Disability Movement in Britain has mirrored society in general and for the most part been led by white, middle-class, heterosexual, articulate males. This review discusses the simultaneous oppression faced by black and Asian disabled children, and concludes that their experience is unique and different from that of white disabled children. Accordingly, it emphasises the need for further research about the subjective experience of black and Asian disabled children in order to meet their particular needs.     

‘It’s better if someone can see me for who I am’: stories of (in)visibility for students with a visual impairment within South African Universities

Issues of visibility, invisibility and the non-disabled gaze are very relevant to the lives of many disabled persons. With this article we tentatively show that, despite the physical ‘over’-visibility of disabled bodies, many intricate parts of their personhood remain obscured and invisible. Interviews with 23 students with a visual impairment revealed that they sometimes experienced stares and averted gazes from their sighted counterparts. In response, they often hid their entire impairment, or parts thereof, in an effort to conform and gain acceptance and to earn membership to a non-disabled peer group. Acceptance was often found in companionship with fellow disabled peers. Since these stories told of continuing exclusion for disabled students on tertiary grounds, further participatory research is recommended.     

Personal and Political: A Feminist Perspective on Researching Physical Disability

Feminist theory and methodology have much to offer in understanding how disability research has been experienced as alienated research by disabled people. However, feminist research has failed to apply its principles to disability and disabled women's subjective reality has found no place in mainstream feminist work. The paper identifies the challenges for feminism in addressing the interests and reality of disabled women, asserting that it is not helpful to focus on 'double disadvantage'. Disability research itself has much to learn from feminist methodology, in particular the principle of making the personal political. The role of non-disabled researchers as allies of disabled people is discussed, and the importance of research which turns the spotlight on the way in which non-disabled society oppresses disabled people. Finally, it is asserted that disability research and politics are of general relevance because the experience of disability is an integral part of a society characterised by fundamental inequalities and ideologies which divide people against each other.     

Interviewing Non-disabled People About Their Disability-related Attitudes: seeking methodologies

Within the field of disability studies there has been a concentration upon the representation of disabled people's experiences within a social context. However, research into non-disabled people's perspectives on disability and impairment has traditionally been based upon a psychologically-driven individualist model of disability which sees disabled people uncritically as 'the problem'. In this apparent epistemological divide, little work has been done on the exploration of non-disabled people's perspectives from a social model angle. This paper outlines a current study of the formation of such perspectives, and specifically explores the methodological conditioners of such an enquiry.     

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.     

Everybody In? The experience of disabled students in further education

The authors report on a study of student attitudes towards disabled students in three colleges of further education. They found that many non-disabled students were not aware of the various issues facing disabled students at the colleges. Social contact between disabled and non-disabled students was not extensive, although those who had attended school with disabled pupils were more likely to have friendships with disabled students at college. Whilst non-disabled students were strongly supportive of inclusive education in principle, many saw inclusion in the mainstream as conditional on the particular impairment of an individual. Disabled and non-disabled students supported the view that early social and educational contact results in greater mutual understanding, and is of benefit to all students.     

A Question of Friendship: Community Care and the Relationships of People with Learning Difficulties

There is evidence that a number of people with learning difficulties living in the community do not enjoy a range of satisfactory social relationships. This paper will examine the way that the issue of the apparent loneliness of people with learning difficulties has been approached in the community care literature. I will argue that there is a clear assumption in much of the literature that friendships between disabled and non-disabled people are of greater value than those relationships between disabled people. The low value accorded to friendships between disabled people is very damaging to their individual self-esteem, as well as to the possibility of political action based on a sense of solidarity. The paper will point also to the constraints that many people with learning difficulties face which render it difficult for them to form friendships and, therefore, reinforce their isolation.     

Children's experiences of disability: pointers to a social model of childhood disability

The social model of disability has paid little attention to disabled children, with few attempts to explore how far it provides an adequate explanatory framework for their experiences. This paper reports findings from a two-year study exploring the lived experiences of 26 disabled children aged 7-15. They experienced disability in four ways—in terms of impairment, difference, other people's behaviour towards them, and material barriers. Most young people presented themselves as similar to non-disabled children: it is suggested they may have lacked a positive language with which to discuss difference. It is further argued that Thomas's (1999) social relational model of disability can help inform understandings of children's experiences, with 'barriers to being' having particular significance.     

Being an inclusive researcher: seeking questions,raising answers

Abstract

In this article, I reflect on three incidents that occurred in my inclusive research work. As a conceptual framework, I use Bourdieu’s call for a reflexive sociology. My reflection is informed by the principles of the disabled people’s movement, especially giving primacy to the experiences and voice of disabled people. It is also informed by the strong link between the disabled people’s movement and disability studies, which requires academics (including non-disabled ones like myself) to be attentive to their activist role. Making sure that this role is carried out effectively, I argue, entails considering the various factors that make our work possible, and being attentive to the impact of our work. It also entails asking questions, of ourselves and others, and being especially attentive to questions that would go unasked unless we stop to reflect about our work, and the possible answers that these reflections can lead to.     

Hate speech harms: a social justice discussion of disabled Norwegians’ experiences

This article presents findings from a survey on hate speech reported by disabled people in Norway. Previous British and American research shows that disabled people are more likely than their non-disabled peers to be the victims of hate speech and hate crime. In our study, 38% reported at least one experience of hate speech during the previous 12 months. The respondents reported a wide range of consequences of hate speech related to psychological, social and societal issues. The findings reveal that people place restrictions on their own lives as a result of being exposed to hate speech, including raising their opinion in public debates. Drawing on the work of Nancy Fraser, we discuss the mechanisms that prevent disabled people from participating in society on equal terms. We conclude that to combat hate speech, transformative strategies need to be applied.     

The exclusion of older people in disability activism and policies — A case of inadvertent ageism?

Using Sweden as a case, the article discusses the tendency within disability activism and policies to overlook elderly people. From an analysis of a major Swedish government investigation on disability it is clear that disability policies in Sweden have come to rest upon stereotyped age norms that divide the life course into set stages, and there has been a tendency to define elderly disabled people as elderly rather than disabled. It is argued that this exclusion is partly the result of a successful endeavor to provide disabled people of younger ages with rights that are typical of non-disabled citizens. Justice and equality have been defined in comparison to citizens of similar ages: children, youth and adults of “active age”. Based on the analysis of the paper it is argued that activities of movements struggling to liberate oppressed populations may contribute to ageism, and that anti-ageist research must go beyond the idea that ageism is a simple matter of attitudes towards older people.     

Disability-based inequity in youth subjective well-being: current findings and future directions

This selective, critical literature review synthesizes recent research exploring disability-based disparities in the subjective well-being and living conditions of youth in high-income countries. Compared with their non-disabled peers, disabled youth report lower levels of happiness, lower global life satisfaction and higher rates of suicidal ideation. Emerging evidence suggests that the relatively poor subjective well-being of disabled youth reflects, at least in part, differential access to material and social resources rather than the presence of chronic conditions or impairment per se. These findings indicate that disability-based disparities in youth subjective well-being are socially patterned and preventable.     

Disabling masculinity: the isolation of a captive audience

In this article, I propose that disabled people tend to engage with and interpret images of people with impairments in a variety of ways that have some degree of correspondence to their structural contexts and their differential access to discursive resources. Contending that gender concerns play a crucial role in the interpretative performances of both disabled and non-disabled participants, it is argued that soap operas are an alienating experience for men in general. I propose that the placement of impairment and disability narratives within the soap opera's structure, as a specific genre, is a particularly demeaning experience for disabled men. Finally, I raise some questions about agency and resistance in such viewing practices, making specific reference to the experiences of disabled men.     

Developing Social Firms in the UK: a contribution to identifying good practice

Social firms and related enterprises are developing rapidly in the UK as a means of providing employment for disabled people. This study examined the kind of enterprise that will best meet the aspirations of disabled people. A telephone survey identified the range of enterprises describing themselves as social firms, and examined their develop ment and operation. Alongside the survey, focus groups with disabled people and interviews with carers explored perspectives on the values that should underpin social firms. The results suggest that indicators of good practice include: user/worker participation in the firm's development and operation; the availability of expert advice to enable informed choice about payment, with payment at the minimum wage rates or higher for those who choose this; opportunities for workers to develop to their full potential; a workforce comprising disabled and non-disabled workers; the involvement of carers and local socio-economic agencies in developing the social firm.     

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.     

Managing manipulation: tools and challenges in creative collaborations with intellectually-disabled people

There has long been an ‘us’ and ‘them’ mentality when it comes to the production of disability narratives on screen, driven by an assumption that non-disabled people cannot accurately interpret the disabled experience. Given the appalling history of representations by non-disabled filmmakers, it is easy to understand why many academics and members of the disability community favour the complete control of disability content by disabled people. But this approach has failed the many compelling ‘disabled voices’ that go unheard because they do not reach audiences. The most practical solution is to forge new models of creative collaboration between disabled and non-disabled people, something I attempted to do with my PhD film, a comedy feature entitled Down Under Mystery Tour. I discovered that the most important tool in such collaborations is the utilisation and management of manipulation, one that prioritises skill and experience and best expresses the unique perspective of intellectually-disabled collaborators.     

The Constitution of Impairment: modernity and the aesthetic of oppression

Impairment has been set aside in debates about disability dominated by the social model. This paper seeks to go beyond the Cartesianism which produces this neglect. It suggests that radical disability studies can prosper from a critique of modernity which entails a shift from its singular epistemological origins in the critique of capitalism. The argument challenges the contention that the oppression of disabled people is reducible to social restrictions which are the outcome of a set of structural determinations. It suggests that the oppression of disabled people is also umbilically linked to the visual constitution of impairment in the scopic regime of modernity. The vision of modernity is impaired by the assumption that to see is to know, that is, by its ocularcentrism. In deconstructing the visual culture of modernity, it is possible to demonstrate that the non-disabled gaze is a product of this specific way of seeing which actually constructs the world that it claims to discover. Using the work of Sartre and, to a lesser extent, Foucault, this paper argues that impairment is constructed-not discovered-in the non-disabled gaze. The invalidation and disfigurement of impaired bodies is, therefore, not simply an economic and cultural response to them, but also arises in the mode of perception which visualises and articulates them as strangers.     

Does She Boil Eggs? Towards a Feminist Model of Disability

The Social Model of Disability is increasingly recognised as the theoretical and ideological underpinning for the collectivisation and politicisation of disabled people. This paper examines the Social Model from the perspective of disabled women. It then considers the position of disabled women in relation to both the women's movement and the disability movement. It argues that the former is oriented towards non-disabled women and the latter towards disabled men, with a consequent further marginalisation and disempowering of disabled women. Drawing on the history of black feminism, the author (who is a white non-disabled woman, and who teaches anti-discriminatory social work practice based on an integrated theoretical model) concludes by offering to disabled women a reframing of the analysis in which to explore their simultaneous experiencing of their gender and disability.     

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.