Conceptualising the psycho‐emotional aspects of disability and impairment: the distortion of personal and psychic boundaries

Recent feminist critics of the social model of disability have pointed towards a danger that disability studies may give relatively little attention to personal and emotional aspects of disablist oppression and impairment. We argue for consideration of the centrality of the distortion of personal and psychic boundaries as a key aspect of oppressive relational dynamics surrounding disability. Within the observer the disturbing psychic evocations of disability, and related defences, are connected to the maintenance of dynamics of unreal, collusory and alienating modes of relating, which may deprive disabled people of the recognition of subjective experience and personhood. Skewed socialisation of disabled people, involving inter alia the protection of the emotional lives of others, as well as the reality of inaccessible material resources, contributes to the internalisation of disablism and the ideological recruitment of disabled people as complicit in their marginalisation.     

A critique of arguments supporting disability avoidance

Many prominent bioethicists argue that positive consequences follow from avoiding disability in offspring by preconceptual, preimplantation or prenatal means. This paper critiques two variants of these positions: ‘Open future’ arguments that avoiding disability is in the interest of the persons who will be affected by it if born and ‘non‐person‐affecting’ claims that failures to avoid disability in offspring are wrong for reasons independent of their effect on affected offspring. Difficulties with both person‐affecting and non‐person‐affecting accounts are discussed in support of the charge that these arguments do not show that positive consequences follow from disability avoidance.     

Older Carers of Adults with a Learning Disability Confront the Future: Issues and Preferences in Planning

The Valuing People White Paper (Department of Health, 2001)requires services to secure a plan for all service-users withlearning disabilities living with older carers and promisesthem and their families more choice and control over how andwhere they live. This paper examines the views of the oldercarers (aged over seventy) of sixty-two adults with a learningdisability about planning for the future. Fifty-six took partin interviews in their own homes and six completed a questionnaire.All carers were white and recruited from one local authorityin response to the requirements of the White Paper. Findingsindicate that a significant proportion (thirty-four—55per cent) is either not ready or is unwilling to make futureplans. Barriers to planning include a perceived lack of needdue to the existence of two carers, a lack of awareness of timescalesinvolved in securing housing, difficulties in letting go, alack of confidence in available housing options, and the existenceof mutually supportive relationships. The findings show a needfor a proactive approach to information and support provisionto enable these families to work through a process of makingplans for the future. This is essential to prevent the needfor emergency placements in response to crisis and in turn toensure that adults with learning disabilities have genuine choiceand involvement in how and where they live.     

Disability and identity: the challenge of epilepsy

Through examining the case of people with epilepsy (which, as we demonstrate, has an ambiguous status in relation to both popular and academic conceptions of disability) we explore the fluid, negotiable and contingent nature of identity and, in particular, the identification as ‘disabled’. Disability, we argue, cannot be reduced to either biology or social oppression, or even primarily to biological or social factors: it is the outcome of a complex interaction between a multiplicity of factors – biological, environmental, social, psychological, cultural and political – which will interact and be experienced differently by different people, at different times and in different situations. Rather than conceiving of disability in ‘all or nothing’ terms and of differing explanations as competing and mutually exclusive, it would be more productive to see them as partial and potentially complementary contributions to the better understanding of a complex and multifarious reality.     

Looking inside the bag of tools: creating research encounters with parents with an intellectual disability

This paper examines the development of fieldwork methodology in a study that investigated the parenting experiences and parent support needs of a group of parents with an intellectual disability. It considers the ways in which the original planning for the project changed as the fieldwork unfolded, requiring adaptations to our methodological expectations and in the process deepening our understanding of the phenomena we were studying and reinforcing for us the importance of relationships in fieldwork‐based research. Three themes in particular are considered that became central to this research: research relationships; safety for participants/positioning of the researcher; suspending assumptions about impairment and disability and influences on life experiences.     

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.     

Citizens with learning disabilities and the right to vote

This paper asks, in the context of recent legislative changes, what can be done to support more citizens in England and Wales with learning disabilities to vote in national elections? This issue is addressed through (i) a review of recent disability access campaigns that have reported discrimination against, and the under‐representation of, adults with disabilities in UK elections; (ii) a review of recent research undertaken in the USA into the assessment of competence to vote and research undertaken in England that conclusively documents the under‐representation of voters with learning disabilities in the 2005 general election. It is proposed that a ‘functional approach’ to developing an individual's capacity to vote could help to fulfil Article 29 of the United Nations' Convention on the rights of persons with disabilities that gives all people the same political rights.     

Northern Crises

Abstract

Using feminist disability studies and intersectionality, this article draws upon the ongoing resource extractions in Labrador, Canada to argue for examining local communities and relationships as one way to understand gender and global social, economic and environmental crises. The article explores how crises in Labrador have been constituted and maintained around global agendas of economic and resource development, historical and current colonial practices and a limited and constrained international relations with local Indigenous nations. The lives of women and their communities in Labrador illustrate one wave of a global crisis that extinguishes diversity and connection to the land in a race to extract natural resources, maintain global military power and gain profit in the global economy. The actions over the past thirty years by NATO and the Canadian federal, provincial and municipal governments, coupled with transnational mining corporations such as Vale, have “normalized” crisis in the communities and reduced the capacity of these communities and Indigenous nations to respond to the issues arising as a result of the Muskrat Falls hydroelectric development project. Yet the women and their communities illustrate their agency and reject an analysis of them exclusively as victims. Together with researchers and activists, the women in Labrador have built a community of practice in the Feminist Northern Network.     

Essential Conditions for Research with Children with Autism: Issues Raised by Two Case Studies

This article discusses conditions for research into the social experiences of children with autism in real‐life contexts using material from case studies of two boys with autism and their friends in mainstream school settings. It is argued that essential conditions for research with children with autism in ordinary social contexts should include a participatory approach, take a wide perspective of group processes, and account for multiple influences on social behaviour. Socially focused, participatory research design allows the social competencies that children with autism do have to be seen and produces multiple perspectives on children's social activity. Children and adults thinking together and sharing their ideas about the nature of experience for a child with autism and their friends allows for shared interpretations and reduces the very real possibility of one researcher alone making wrong assumptions about the nature of the investigation.     

From leprosy to The Willow Tree: decoding disability and Islamic spirituality in Iranian film

The lack of attention in academic discourse to representations of disability in films from the Middle East has led to an incomplete picture of representations of disability in global cinema. For instance, the diverse meanings of disability in Iranian cinema and the influence of disability on the emergence of Iranian New Wave cinema have been almost completely ignored by scholars. A number of award-winning films from Iran have featured disability as central to their narratives – such as The House is Black (1963), Taste of Cherry (1997), The Color of Paradise (1999), The Willow Tree (2005), and The Painting Pool (2013). Disability in these films serves alternatively as a symbol of spiritual possibility, a mark of marginalization, and a covert social critique. These films examine the emotional, physical, and social implications of disability, while celebrating the cultural power of film to challenge social, religious, and artistic barriers.