Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.     

‘Weightless?’: disrupting relations of power in/through photographic imagery of persons with intellectual disabilities

Missing in discussions of visual representations of people with intellectual disabilities are their own perspectives. Rooted in Derrida’s concern with the ‘right of inspection’ over visual representations, participatory arts-informed methodologies were used in research with people with intellectual disabilities. They critiqued and then used Photoshop to transform public photographs of labeled people. Responding to visual constructions of labeled persons as ‘weightless’/powerless, they revealed personal experiences of being denied control over their lives and representations. Yet their critiques and transformations reveal possibilities for their re-conceptualization as powerful, subverting stereotypes of labeled people and disrupting relations of power in disability imagery.     

Barriers to inclusive education in Greece,Spain and Lithuania: results from emancipatory disability research

Inclusive education is a key aspect of the European Disability Strategy 2010–2020. The aim of this study is to give voice to three local organisations of people with disability and for people with disability in Spain, Lithuania and Greece, discussing the EU policy for inclusive education in relation to personal experiences and national policies, as part of the Able’20 European project. The points of view of 58 young people with disabilities were collected through the ‘theatre of the oppressed’ approach as an emancipatory disability research tool, aiming at the empowerment of young people with disabilities and their organisations. The voices of young people show the presence of physical barriers alongside more challenging cultural and institutional barriers, which strongly limit access to inclusive education, showing an opposite trend to the EU policy, and overshadowing the social model of disability.     

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.     

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.     

Crip theory and the disabled identity: why disability politics needs impairment

This article highlights the importance of recognizing both the ontology of impairment as it relates to the creation of the disabled identity as well as why articulations of the disabled identity being ‘crip’ obfuscate potential politics. Examining how the disabled identity has been cast as a coherent social and political category, rather than the messy and complicated identity it truly is, I argue the adoption of a post-structuralist orientation by activists and advocates is bad for disability politics. Providing two examples, the first focusing on a publicized rape case of a person with an intellectual disability and the second on the importance of disability rights claims based on visibility of impairment, I show how articulations like those made in crip theory can have serious, negative implications for the lived experience of people with disabilities. I conclude with a call for disability studies scholars to engage disability politics in their work.     

Poverty and disabled households in the People’s Republic of China: experiences with a new rural health insurance scheme

This article discusses what in international literature has commonly been termed the ‘vicious circle’ of poverty and disability. Our aim is to shed light on recent policies that attempt to break the vicious circle in rural areas in the People’s Republic of China. Drawing on data produced from fieldwork conducted in the Inner Mongolia Autonomous Region, People’s Republic of China, our approach is to explore experiences that households with people with disabilities have had with a newly implemented rural health insurance reform. The introduction of this reform is significant as lack of insurance and high healthcare expenses are currently perceived as crucial to causing poverty in rural China. We show that people with disabilities have been able to access this new insurance. At the same time, as currently practised, the new insurance does not prevent poor households from sinking deeper into poverty when using healthcare services as healthcare expenses increase.     

Dementia,disability rights and disablism: understanding the social position of people living with dementia

This article considers the recent history and consequences of positioning people living with dementia in the realms of disability, disablism and disability rights. The geo-political focus is the United Kingdom and neighbouring resource-rich nations in the Global North. The first section examines the growing trend of identifying ‘dementia’ with ‘disability’, a trend fuelled by the expansion of dementia-related activism and research. The second section focuses on how researchers who have published in Disability & Society and other journals have applied the social model of disability to individuals living with dementia. The third section discusses three conceptual challenges that lie ahead for those who choose to research and theorise the dementia/disability connection. These challenges concern: theorising dementia as disability; understanding intersectionality in dementia contexts; and understanding ‘abuse’ in dementia contexts.     

The blurred edges of intellectual disability

The label of ‘intellectual disability’ can be a very blurred concept, because for those on the borders their label often arises from the interaction of the individual with their environment, from their socio-economic status, and from the social role which they choose to undertake. This paper explores the contested notion of intellectual disability in the context of people who have been in trouble with the law in England, and contrasts their situation with that of people who have been protected by best interests decisions under the Mental Capacity Act (England and Wales). People who are on the ‘borderline’ of having an intellectual disability, like any citizens, have a range of intersecting identities. Drawing on the notions of ‘interactional’ disability theory, we reflect on the shifting, relative nature of intellectual disability, and the need for the law to focus on support needs, rather than on impairment.     

‘I open the coffin and here I am’: disability as oppression and education as liberation in the construction of personal identity

This article presents a case study focused on the experiences of Rafael, a resilient young musician. The research is based on 180 records made through interviews, focus groups, observations and documentary collection, involving 190 informants. The data analysis shows that social systems create subordinated and stigmatised conditions of experience for people with disabilities which lead to social exclusion and reification. This understanding of disability as oppression (which is the ‘coffin of the dead’) can be combated by means of education, understood as resistance to inequality. This can be effected by questioning the social order and power relationships, thus striving to produce the possibility of being a subject. In this way Rafael has been able to construct his identity relatively autonomously, challenging social mandates that led him to exclusion and denied his existence as a subject. In his own words: ‘I open the coffin and here I am’.     

Invisible disabilities,visible Service Dogs: the discrimination of Service Dog handlers

This article examines the social experiences of Service Dog handlers using survey data from adult US Service Dog handlers (N = 482). The main research question examined is how disability visibility impacts the experiences of Service Dog-related discrimination. Analysis reveals that half of all Service Dog handlers report experiencing discrimination but those with invisible disabilities report experiencing significantly more discrimination. For those with invisible disabilities, the decision to use a Service Dog prevents them from ‘passing’ while at the same time opening them up to increased skepticism about the legitimacy of their disability.     

‘I couldn’t just entirely be her sister’: the relational and social policy implications of care between young adult siblings with and without disabilities

Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.     

Refugee resettlement and the Convention on the Rights of Persons with Disabilities

The Convention on the Rights of Persons with Disabilities (CRPD) created pathways for people who are refugees with disabilities to resettle and build new lives. Resettlement country Australia, in response to its CRPD obligations, created greater access to the waiver of visa health requirements for humanitarian entrants. This article chronicles key documents demonstrating that the CRPD has been an effective instrument for improving access to resettlement for people with disabilities. The article also describes new challenges to Australia’s compliance with the CRPD as it fails to address multiple discrimination of people from refugee backgrounds with disabilities, an area of concern to the Committee on the Rights of Persons with Disabilities for which it has issued guidance. This article proposes creating a United Nations High Commissioner for Refugees Resettlement Submission Category for disability to improve resettlement programmes’ compliance with the CRPD.     

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.     

Using discourse analysis to study the experiences of women with learning disabilities

There has been a steady rise in interest in qualitative research methods in the area of learning disability over recent years. Discourse analysis has found relatively little use though, particularly in studying the experiences of people with learning disabilities directly, rather than the accounts of non-disabled informants. The present study used a discourse analytic approach in examining the accounts of women with learning disabilities, in order to arrive at an understanding how they position themselves in relation to gender and disability. The results indicate that, while the learning disability literature and services are largely ‘gender blind’, for women with learning disabilities gender and disability cannot be separated. Instead, they may be faced with marked contradictions and dilemmas when they position themselves within dominant discourses of gender, while also subject to powerful discourses of disability.     

‘Trial by fire’: forms of impairment disclosure and implications for disability identity

This article examines the ways in which people living with non-apparent impairments, sometimes called ‘invisible disabilities,’ choose to disclose their impairments to friends, colleagues, and supervisors. Drawing on life-history narratives conducted with 12 men and women who acquired non-apparent impairment through accident, injury, or illness, this analysis demonstrates that people who have acquired non-apparent impairment use three primary forms of disclosure – confessional, pragmatic, and validating – serving as mechanisms by which individuals internalize the stigma associated with disability, pragmatically acquire accommodations, or resist and challenge ableist views. This analysis shows the ways that disclosure more broadly, and these forms specifically, play important roles in developing and negotiating disability identity.     

The care manager’s dilemma: balancing human rights with risk management under the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003

In New Zealand, the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003 provides diversion for persons with an intellectual disability who have been charged with, or convicted of, a criminal offence. This unique Act moves the responsibility for such ‘care recipients’ from the criminal justice system to a disability sector that values a social model of disability and philosophies of autonomy, choice and normalisation. This research identified dilemmas faced by care managers legally responsible for care recipients. Care managers experienced: tension between imperatives of risk management, rehabilitation and human rights; role ambiguity between ‘custodian’ or ‘therapist’; philosophical incongruity within their services; and ethical dilemmas over decisions to lengthen care orders. The changing care recipient population has intensified these dilemmas: services must now adapt to the needs of young, street-wise people with alcohol and drug problems and histories of criminal behaviour. The article makes recommendations about how these dilemmas can be addressed.     

What’s disability got to do with it? Changing constructions of Oscar Pistorius before and after the death of Reeva Steenkamp

Traditionally disability has been viewed in the popular imagination as either a highly positive or highly negative phenomenon. Disability and disabled people deserve to be seen in an integrated, holistic way and to have recognised as much diversity as characterises the human condition. The recent case of Oscar Pistorius fatally shooting Reeva Steenkamp has highlighted this tendency. Before this incident, Pistorius’ disability was viewed in a predominantly positive light. He had been described as a ‘supercrip’ who had, despite his physical impairments, ‘overcome’ his mobility limitations and was consequently attributed heroic status by some. However, after this fatal incident, the portrayal of Pistorius’ disability has, perhaps inevitably, shifted. This paper will offer possible psychosocial reasons for this tendency to view disability in a binary way.     

Disability advocacy in Kinshasa,Democratic Republic of the Congo

This article frames a discussion of disability advocacy in Kinshasa by arguing the importance of disability rights legislation for the quality of life of people with disabilities and by outlining the Democratic Republic of the Congo’s situation as a nation characterized by conflict. The author provides an overview of the recent positive steps the government has taken to affirm the rights of its citizens with disabilities, discusses the strong disability advocacy movement based in the capital city of Kinshasa, and identifies some of the challenges to Congolese disability rights legislation.