‘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.     

Negotiating identities: the lives of Pakistani and Bangladeshi young disabled people

Research has generally amalgamated minority ethnic (all called 'Asian' or 'black') disabled young people's experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their perspectives and experiences. In an attempt to address this issue my doctoral research explored the experiences and perspectives of 13 young Pakistani and Bangladeshi disabled people. By drawing on the substantive and theoretical findings which emerged from my analysis in this paper I shall consider how multiple aspects of identity, such as ethnicity, disability and gender, affect this population's identity and self-image and how this makes their experiences different from white disabled young people and other minority groups' experiences.     

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.     

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.     

‘The language is disgusting and they refer to my disability’: the cyberharassment of disabled people

Disabled people face hostility and harassment in their socio-cultural environment. The use of electronic communications creates an online context that further reshapes this discrimination. We explored the experiences of 19 disabled victims of cyberharassment. Five themes emerged from the study: disability and health consequences, family involvement, misrepresentation of self, perceived complexity, and lack of awareness and expertise. Cyberharassment incidents against disabled people were influenced by the pre-existing impairment, perceived hate-targeting, and perpetrators faking disability to get closer to victims online. Our findings highlight a growing issue requiring action and proper support.     

Disability in the UK: measuring equality

In this article we identify the key survey data for examining the issue of equality in the lives of disabled people in the UK. Such data is essential for assessing change in quality of life over time and for the evaluation of the impact of policy initiatives. For each data source we consider definitions, data collection, issue coverage, sample size and data access. It is evident that there is only limited survey data on the lives of disabled people in the UK. A number of national surveys include questions on disability, but many offer only limited coverage. There is a tendency to focus on the medical aspects of disability and a failure to clearly distinguish disability from other health issues. Moreover, disability definitions vary and sample sizes are often too small to compare differences by age, gender, ethnicity or locality. For effective policy development there is a need to identify and measure what leads to change in disabled peoples' lives.     

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.     

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.     

Globalising accessibility: drawing on the experiences of developed countries to enable the participation of disabled people in Zambia

This paper explores the accessibility situation in a developing country such as Zambia. The global view of accessibility for disabled people is provided to examine the accessibility situation in developed and developing countries, highlighting the role of the environment in achieving rights for disabled people. Recognition of disability rights relating to accessible built environments is a necessary element to ensure their participation. Limited disability research, lack of disability policies and systems, evaluation of disability rights and support from developed countries have been cited as contributing to the non-recognition of disability rights and low participation by disabled people in Africa. An international perspective of disability, accessibility and participation and the experiences of developed countries are examined and their potential for advancing accessible built environments for participation in developing countries considered. However, accessibility concepts, having been developed in western countries, are presented with caution acknowledging the geographical, social–cultural and economic differences that exist.     

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.     

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.     

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.     

Expectations and realisations: the employment story of a young man with cerebral palsy

Britain has laws and a range of policies which promote the employment of disabled people. The lack of progress to get disabled people into paid work has resulted in huge dissatisfaction for some. Evidence of disability and employment problems is often expressed as hard data, but what of the personal experiences of trying to find employment? This article is based on interviews with ‘Nick’, a young man with cerebral palsy who wanted to recount his preparation for work, including work experience, through school, the Connexions service and the local Employment Office. He explained how he felt his voluntary work and work experiences were not fully planned and ultimately unsatisfactory. Nick found paid employment, but soon discovered that there were too many problems for him to continue. He reflected on his experiences, including his own initial confidence, his despair at the ending of his paid employment and the realities of what employment means for him.     

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.     

Chinese disability independent living policy

Despite strong statements on disability rights in Chinese legislation since 1990, independent living policy as experienced by disabled people falls short of the social inclusion goals expected from such a policy commitment. Analysis of empirical research about disabled people's experiences shows that responsibility for independent living rests primarily with disabled people and their families. Only when they have no family does the government provide support, in the form of institutional care. Very little personal assistance or community-based housing is available. Minimum income support and the introduction of social services are slowly addressing the social exclusion of disabled people in China.     

The work of disabled identities in intimate relationships

This article details a thematic analysis of disabled men and women’s accounts of past and present intimate relationships. Drawing upon the sexual stories of 25 disabled people, informants’ intimate relationships are explored as a site of emotional work, and as a site of other forms of (gendered) work. This article critically questions the work carried out by informants and considers the ways in which it was shaped by their lived experiences of gender, sexuality, impairment and disability. The article concludes that the requirement to carry out forms of work within intimate and sexual life constituted a form of psycho-emotional disablism.     

Developing a model of disability that focuses on the actions of disabled people

Disabled people, writers on disability and disability activists stress the importance of disabled people being included in all aspects of society. I argue that a major omission from this inclusiveness is that no current model of disability focuses on the impact of the actions of disabled people on disability. Disabled people are not passive bystanders, powerless to reduce the restrictions of disability. On the contrary, we are central to actively limiting its constraints. I develop a model of disability, called ‘active’, which focuses on the effects on disability of the individual and collective actions of disabled people. I describe published findings which indicate that engaging in self-help, using support groups and deploying assistive technology can all reduce the limitations of disability. Recent increases in the number of disability support groups and developments in assistive technology have substantially augmented the potential for disabled people to combat the effects of disability.     

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.     

The Dialectics of Multiple Identities and the Disabled People's Movement

This paper explores the issue of commonality and difference in the disabled people's movement in relation to ethnicity, gender sexuality, age and class. Hitherto, disability academics have either ignored or tagged on the experience of disabled black and minority ethnic people, women, older people, and gay men and lesbians. When they are discussed, they have more often than not been discussed separately - for example, disabled black people's experience has always been discussed separately, disabled women, disabled gay men and lesbians and disabled older women. Hence it is not surprising if 'simultaneous oppression' is perceived to be the unique experience of a minority of disabled people. Here, I suggest that it is, in fact, the experience of a majority of disabled people since the majority is not a homogenous mass of disabled white heterosexual middle-class young men, but individuals from diverse backgrounds with a wide range of identities and experiences, and to accept that their only concern is disability is to fall into the same trap as the general population most of whom only see the impairment and not the person. It is imperative to note, however, that the blame does not lie with the social model of disability, as it is sometimes assumed, for that is merely a conceptual tool. The paper discusses the concept 'simultaneous oppression' as applied to the experience of black women and later disabled black people. It is suggested that this is too simplistic an analysis to capture the day to day experience of those who possess negatively labelled multiple identities. An alternative framework is suggested to link the experience of different groups of disabled people and, hence, offer a common ground for unity in the disabled people's movement.