Disability and Chronic Illness Identity: Interviews with Lesbians and Bisexual Women and Their Partners

Disability rights activists and cultural workers are articulating disability identity and culture. Through interviews with lesbians and bisexual women with disabilities or chronic illnesses and their partners, the present study examined disability/chronic illness identity on the level of individual, couple, and community. Participants shared differing perspectives about how disability/chronic illness identity relates to other aspects of identity, and about whether disability/chronic illness identity is fluid or constant. They described several challenges they have encountered in developing disability/chronic illness identity. Couples talked about developing boundaries and balance in their relationships, and about how disability or chronic illness has strengthened their relationships. A number of participants spoke about identity as intimately linked with community. Implications for community building are discussed.     

Three Days to Walk: a personal story of life writing and disability consciousness in China

Through a close reading of Three Days to Walk, a memoir of disability by Chinese writer Zhang Yuncheng, this paper develops a new understanding of self-narrated life writing and its intersection with disability consciousness in the contemporary Chinese context. It examines the changing nature of disability life writing since the end of the early 1980s, a time when the images and voices of disabled began to emerge from effective cultural invisibility and silence. In a move away from state-sponsored ‘triumph over tragedy’ biographical narratives typical of the immediate post-Cultural Revolution period, Three Days to Walk is characteristic of a new popular trend to publish self-narrated life stories that reveal unique and intimate histories of disability experience both imbued with and propelled by a burgeoning sense of disability consciousness in the Chinese context.     

Disability Services and College Students with Psychiatric Disabilities

Abstract

Weiner (1999) has suggested that the process of accepting a disability and its associated limitations is often protracted for students with psychiatric disabilities, thus leaving many students unable to fully participate in services or in the design of academic accommodations. This research examines the relationship between psychiatric disability identity and use of academic accommodation services for 57 undergraduates with psychiatric impairments who are experiencing problems in their academic functioning. Willingness to utilize services was related to students' identification as having a psychiatric disability. Social work interventions are needed to support students in accepting psychiatric disabilities while concurrently crafting necessary accommodations.     

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.     

I am who I need to be: reflections on parental identity development from a father of a child with disabilities

In this article, I describe the process by which I internalized disability as a construct of my identity, as a result of my son being diagnosed with cerebral palsy. This process was focused on the skillsets I needed to develop to navigate structures associated with disability on behalf of my son. In doing so, an identity focused on negotiating/maintaining the borders between my own perspective as an able-bodied individual and the needs of my disabled son emerged.     

‘I am bodied’. ‘I am sexual’. ‘I am human’. Experiencing deafness and gayness: a story of a young man

This paper examines experiences of Deaf gay people through the eyes of a young Deaf man growing up in the predominantly hearing and heterosexual society of the Czech Republic. In the current disability and gender studies discourse there are several personal accounts of people with disabilities who also identify as gay or lesbian, but narratives about Deafness and gayness are rare or missing. To ‘queer’ the issue of Deafness and disability a little further, most Deaf people claim to be a linguistic and cultural minority, not disabled. Being Deaf and gay suggests a double identity and quite often exclusion from the majority hearing and heterosexual society. The story of 24‐year‐old Jan illustrates the struggle and challenges of a minority within a minority.     

Identity,impairment and disablement: exploring the social processes impacting identity change in adults living with acquired neurological impairments

The social model of disability acknowledges the impact of impairments but argues that disablement is socially constructed. Taking a theoretical perspective, underpinned by the social model of disability and elements of social identity theory, we investigated the relationship between impairment, disablement and identity change in adults living with an acquired neurological impairment. Through the thematic analysis, three themes emerged: changing self described the personal factors for identity change in people acquiring impairment; changing communities explored the contextual factors creating both socially constructed disablement and identity change; and influencing identity change considered strategies adopted by individuals to both counter socially constructed disablement and promote exploration of identity. A systemic change towards acknowledgement and valuing a disabled identity may counter socially constructed disablement and support enablement and social inclusivity.     

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.     

The medicalization of Nonhuman Animal rights: frame contestation and the exploitation of disability

Nonhuman Animal rights activists are sometimes dismissed as ‘crazy’ or irrational by countermovements seeking to protect status quo social structures. Social movements themselves often utilize disability narratives in their claims-making as well. In this article, we argue that Nonhuman Animal exploitation and Nonhuman Animal rights activism are sometimes medicalized in frame disputes. The contestation over mental ability ultimately exploits humans with disabilities. The medicalization of Nonhuman Animal rights activism diminishes activists’ social justice claims, but the movement’s medicalization of Nonhuman Animal use unfairly otherizes its target population and treats disability identity as a pejorative. Utilizing a content analysis of major newspapers and anti-speciesist activist blogs published between 2009 and 2013, it is argued that disability has been incorporated into the tactical repertoires of the Nonhuman Animal rights movement and countermovements, becoming a site of frame contestation. The findings could have implications for a number of other social movements that also negatively utilize disability narratives.     

西方残障身份发展理论述评及本土化思考

积极的残障身份认同对残障者本身具有重要意义,残障身份发展是残障者实现身份认同的路径,理解残障身份发展的过程也可以让残疾人工作者更好地为残障者提供教育、康复等相关服务。本文通过梳理较为典型的西方残障身份发展理论,结合国内残障身份相关研究及本土社会文化背景展开讨论。文章认为,在西方残障身份发展理论框架下,残障者形成积极身份认同的关键在于认同并融入一套在残障社区内共享的残障文化,而在我国社会文化背景下,目前并没有一套成体系的残障文化,残障者也难以体会残障的文化身份感,国内残障者的身份认同缺少本土残障文化依靠。     

Coming Out and Coming Home

This paper draws on the testimonies of British disabled lesbians and gay men about their experience of coming out as gay, and coming out as disabled. They reflect on the different aspects of their identity, and the interrelation of their sexuality and their disability. The respondents share their experiences of exclusion and marginality in both the disability and gay communities, and discuss where they feel most at home as disabled lesbians and gays.     

‘My grandchild has a disability’: Impact on grandparenting identity, roles and relationships

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents' sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent's views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying.     

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.     

Cheats,charity cases and inspirations: disrupting the circulation of disability-based memes online

With the increasing part online self-performance plays in day-to-day life in the twenty-first century, it is not surprising that critiques of the way the daily social drama of disability plays out in online spaces and places have begun to gain prominence. In this article, I consider memes as a highly specific style or strategy for representing disability via social media sites. I identify three commonly circulating categories of meme – the charity case, inspiration and cheat memes – all of which offer representations that people with disabilities find highly problematic. I then investigate the ways in which disabled people have begun to resist the representation and circulation of these commonly circulating categories of memes, via the production of counter or parodic memes. I focus, in particular, on the subversive potential of these counter memes, within disability communities online and within broader communities online.     

Parent,carer, person: future plans and the identities of parent carers for people with disabilities

Parent carers are often central in future planning for their children with disability; however, little is known about the implications of planning for parents’ futures and aspirations. In understanding these, parents’ own identities are important, but how these identities intersect with their planning is not well understood. This study explored how parents were positioned in discussions about planning. Interviews with parents and planning service staff highlighted three positions among parents – carer, parent, and person – representing multiple, intersecting identities. These impacted on and were impacted by planning in particular ways. Understanding these processes may assist programmes to support parents more effectively.     

Women’s perceptions of how their dyslexia impacts on their mothering

Women with children have been depicted as struggling to justify themselves in the shadow of intensive mothering ideology. However, little is said about women who have a disability such as dyslexia, and how disability may intersect with intensive mothering ideology to present additional challenges. In this paper, life-story interviews are drawn upon to start to unpack the ways in which mothering and dyslexia may intersect. The themes discussed include: fear and perceived challenges of having a child with dyslexia; how mothers perceived their impairments manifest in their mothering, including poor organisational skills, short-term memory, reading and spelling; and how mothers may attempt to reframe the apparent contradiction between a ‘good’ mother and a mother with dyslexia by, for example, portraying themselves as a positive role-model for their child and better able to identify and cater for their child’s needs.     

The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews,values and mythologies

Intellectual disability is commonly conceptualised as stigmatised identity with which one has to live. However, within the literature the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability, with an emphasis on the identities and social roles of people with an intellectual disability. Informed by a contextualist perspective, this research was conducted within a participatory framework. The co-researchers involved in this research were 18 members of an advocacy agency. Photovoice and conversational interviewing were used to collect data and causal layered analysis was used to deconstruct the data. Analysis of the interactions that emerged across the causal layers revealed a complex dynamic of worldviews which served to construct people with an intellectual disability as incompetent, inherently different and not quite human. For genuine, transformative change to occur, developing an awareness and understanding of social processes, such as dehumanisation, is crucial.     

Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

This article examines the experiences of citizens with dementia who campaign for social change, with a particular focus on the effects of campaigning on citizenry identity and psycho-emotional well-being. In diary-interviews, 16 people with dementia recorded and described their experiences of campaigning. Findings revealed that although campaigning can be energising and reaffirming of citizen identity, because it (re)located a person within the realm of work, individuals may experience dementia-related fatigue and oppression linked to normative expectations about what someone with dementia ‘should’ be like. The discussion is linked to critical debates within disability studies about the psycho-emotional aspects of impairment and disability, and concludes that the struggle for citizenship has only just begun for people with dementia.     

Searching for self in a world of labels

Searching for Self is a performance poetry piece that demonstrates the difficulties of identity construction in contemporary life. The author challenges the ‘self’ and ‘other’ dichotomy, and in so doing she attempts to reduce the distance between the ‘client’ and ‘expert’; the researcher and researched; the service provider and service user; and theory and practice. The poems are linked to the authors’ experiences of being labeled with a disability.     

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.