Embodying and enacting disability as siblings: experiencing disability in relationships between young adult siblings with and without disabilities

Abstract

Where one sibling has a disability, research has examined the role of disability in sibling relationships; however, the majority has reflected a normative understanding of sibling relationships and a deficit understanding of disability. Reacting to this history, this paper draws on the concepts of embodiment (absorption of bodily experience into self/identity) and enactment (performance of self/identity) to provide a new way of understanding the role of disability in sibling relationships. Using data from an Australian study of young adult siblings with and without disabilities, the paper discusses how disability is embodied and enacted in: how siblings engage in supportive and conflictual talk and everyday chat with each other; how they enact recreation and seek connection with each other; and how they strive to understand and experience their emotions about each other. The paper ends by discussing how embodiment and enactment allow a clearer understanding of disability in sibling relationships, which may be empowering for siblings.     

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.     

Qualitative inquiry of sibling relationships: reinforcement of disability devaluation through the exclusion of voices

People with disabilities share a history and culture of marginalization and oppression. In disability studies, disability has been re-defined as an inability or limitation in performance of the roles and tasks expected of individuals within society which excludes people from becoming full participants in social, cultural, and political affairs. Disability research has traditionally been ‘on’ rather than ‘with’ people with disabilities. This article examines how qualitative sibling disability research has been conducted, with a particular focus on the exclusion of people with disabilities.     

Children's perceptions of their disabled siblings: ‘she's different but it's normal for us’

This paper reports on a two‐year study exploring children's understandings of disability. It focuses on findings from interviews conducted with 24 children, aged 6 to 19, who had disabled siblings, exploring their perceptions of impairment, disability and difference. Most were very aware of their sibling's impairment but the majority did not see that as making their siblings different. Where difference was perceived, this was sometimes attributed to their siblings' experience of disability—unequal treatment and the hostile attitudes of others. Most children saw their disabled sibling as holding various identities and their shared biographies, as members of the same family, may have taken precedence over any perceived differences.     

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.     

That time I punched a boy in the forehead: sibling stories ahead of research

In the past month, I have been building relationships with community members at a prairie-based research site in Canada by telling a story about my own sibling advocacy. Namely, the story about that time I punched a boy in the forehead when I was a kid. I observe that this story helps build trust between me and the families invested in a new research project. This is a current issue because recent research on the utility of sibling stories suggests that these narrative accounts, diverse as they may be, are foundational to knowledge creation about disability. Yet these stories are under threat of pathologization when they are understood through a clinical lens, rather than a critical disability studies lens. I conclude by suggesting that sibling stories ought to be claimed as pivotal to critical understandings of disability experiences.     

Psychiatrist–consumer relationships in US public mental health care: consumers’ views of a disability system

The US public mental health system is a disability system. By this is meant that public programs for people with mental illness serve consumers who are seriously and chronically ill, functionally disabled and eligible for benefits by virtue of their disability. This study explores, through focus groups and qualitative data analysis, the perceptions of these consumers of their relationships with public sector psychiatrists. Thematic analysis finds relationships of three types – compliance, collaboration and contention – and constituent sub‐themes that specify these further. Issues of poverty and powerlessness arise in every category, but especially in contentious relationships. Although the converse is widely believed to be true, this paper argues that the economic and political empowerment of people with psychiatric disabilities is vital to the success of their clinical care     

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.     

Social constructions of fatness: legal proceedings in Canada as a case in point

This article uses reports of cases of Canadian legal processes to explore social constructions of fatness as disability, as well as illness, cultural aesthetic, and blame. The review of cases in Canadian human rights, civil, administrative, and employment law suggests that fatness has been constructed as a disability in Canadian law. This has led to favourable outcomes for fat persons seeking redress for discrimination. Illness, cultural aesthetic, and blame also surface as recurrent themes. To consider all four themes, a concept of mythopoeia – myth-making process – is introduced. This adds to models of social construction by focusing on where ‘un-reality’ is constructed in a non-hierarchical view of marginal identities. Fatness constructions/mythopoeia of disability, illness, cultural aesthetic, and blame overlap as well as diverge. This suggests that fatness may be an incomplete fit with current classifications in human rights law.     

Contesting disabling conditions of life in the Global South: disability activists’ and service providers’ experiences in Guyana

This article addresses an important gap in our understanding of issues of impairment and disability, namely challenges facing disabled activists and service providers in the majority world context of the developing nation of Guyana. The article argues that developing a southern standpoint on impairment, disability, disability activism and service provision requires a reframing of disability issues as matters of distributive justice and not only human rights. Challenges facing disability activists and service providers in Guyana included trying to combat internalized ableism, financial and cultural barriers to political engagement and visibility, tensions in claiming or rejecting disabled identities and difficulties in accessing foreign aid funding for disability initiatives. The article concludes by stressing the importance of rethinking how we do disability studies so that it allows critical analysis of the dynamics of a global capitalist corporeal class order in the context of the majority world.     

Deaf adults: retrospective narratives of school experiences and teacher expectations

Seventeen Deaf adults were interviewed about their perceptions of teacher expectations during childhood. Using a six-phase thematic analysis methodology, five themes emerged: helpful and challenging teachers, preference for Deaf teachers, the experience of lowered expectations, the worst teachers, and self-advocacy. The worst teachers were the ones who did not meet communication needs rather than those with the lowest expectations. Participants often advocated for their needs and demanded more challenging schoolwork. Implications of this study are noted for self-advocacy and resistance theories of disability, and introducing cultural perspectives and understandings of disability and Deaf experiences into teacher preparation.     

Chinese Adolescents' Sibling Conflicts: Links With Maternal Involvement in Sibling Relationships and Coparenting

This study explored how maternal involvement in sibling relationships and coparenting behaviors were associated with adolescents' sibling conflicts. Adolescents (M_age = 12.25 years; 47.8% boys) and their mothers from 542 families in China participated in this research. Mothers completed questionnaires that assessed their strategies of involvement in sibling relationships, as well as their perceptions of the quality of their coparenting behaviors. Furthermore, adolescents completed questionnaires that assessed sibling conflicts. Results revealed that the mother's positive guidance was negatively related and their authoritarian control was positively related to sibling conflict. A significant interaction was also found between positive maternal guidance in sibling relationships and undermining coparenting behaviors. These findings underscore the unique and interactive effects of mothers' direct involvement in sibling relationships and coparenting behaviors in adolescents' sibling conflicts.     

Intersectional understandings of disability and implications for a social justice reform agenda in education policy and practice

This article explores the multiple and shifting ways in which disability intersects with other sources of social disadvantage. Disablism forms part of an intricate web of social conditions that subjugate certain forms of ‘student-subjects' and create compounding forms of oppression and exclusion that need to be addressed through relevant education policy and practice. Intersectional understandings of disability expose the multiple dynamics that impact upon constructing disabled students' identities. These identities should not be regarded as fixed and transcendental entities gauged against varied bodily, mental and psychological differences, but should be understood in conjunction with the ways in which race, gender and socio-economic status intersect with the experience of disability. Intersectional understandings of disability, drawn from intersectional feminism and disability studies, destabilize reductionist accounts of individual pathology and privilege new forms of pedagogical thinking and acting that prioritize a social justice framework in tackling wider systemic rigidities and oppressive educational regimes.     

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.     

When identities collide: masculinity,disability and race

This study is part of a larger project that examined the impact of violently acquired spinal cord injuries (VASCI) on identity among racial and ethnic minority men living in a major American metropolis. Like other individuals who sustain a disabling injury, individuals with a VASCI often struggle with the consequences of the injury vis‐à‐vis redefining their identities and their role in society. For the men in this study the negative association between disability and dependency affected the integration of the injury into their sense of self. The injury and resulting disability violated social understandings of what it means to be a man in their environments. The men noted the injury’s impact on their sense of safety, sexual encounters, body image and choice of intimate partners. Their social context shaped what it meant to be a man, played a role in their injuries and increased the challenges inherent in a life‐changing event.     

Strategic approaches to disability disclosure on social media

Persons with physical disabilities often face isolation in face-to-face settings or limited opportunities to form relationships due to an ongoing, and often derogatory, disability narrative of difference. Unlike face-to-face interactions, social media let persons with disabilities control how and when they disclose information about their disabilities and offer new opportunities for relationship formation. This qualitative study establishes a theoretical framework for exploring how and why persons with physical disabilities choose to disclose their disabilities on social media platforms. Major findings from the study describe three strategic approaches (open, secure, and limited) to disability disclosure on social media. The study also examines the relationship between age of discloser and age of the disability as key factors in approach selection.     

Hmong Americans' Changing Views and Approaches Towards Disability

ABSTRACT

This article discusses how the concept of disability has evolved among Hmong Americans. The term disability has its unique cultural roots in Hmong traditions. Findings from a study of a sample of Hmong Americans in Northern California confirm the changing Hmong Americans' views on the issue of disability and their use of shaman. Families, community leaders, and shaman continue to be the primary support network and sources of consultation for many Hmong Americans.     

Family Subsystems Predicting Adolescents’ Perceptions of Sibling Relationship Quality Over Time

This study examined associations between parents’ relationship conflict and parent–adolescent triangulation, and changes in adolescents’ perceptions of sibling affection and hostility. The goal was to learn whether conflict in parents’ relationships spills over to siblings’ relationships, or whether siblings compensate by becoming less hostile and more affectionate. Using a subsample (N = 400) from the Flourishing Families Project (FFP), we found a trend for mother–adolescent triangulation predicting an increase in sibling hostility across 2 years. Fathers’ reports of relationship conflict were related to increased levels of initial sibling hostility, but predicted a marginal decrease in hostility over time. Findings support increased understanding of parenting dynamics associated with changes in sibling relationship quality, and have the potential to inform clinical practice.     

Gender and Disability in Male‐Dominated Occupations: A Social Relational Model

Evidence from male‐dominated sectors points to high levels of disability and the disabling nature of working environments. However, research of this nature assumes a medical model of disability that does not account for the social construction of disability or the lived experiences of disabled employees. Using data from seven focus groups (n = 44) and semi‐structured interviews with professional transport employees with life‐long hidden ‘impairments’, including dyslexia, dyscalculia, dyspraxia, ADD/ADHD and Asperger syndrome (n = 22), this paper explores the lived experiences of men and women working in a sector traditionally dominated by men, the transport industry. Key themes include homosociality, public–private divide and the impact of changing work practices. Further, the data revealed how those with hidden ‘impairments’ in part construct their identities in relation to both non‐disabled colleagues and those considered stereotypically representing disability (wheelchair users). This study furthers understandings of the relationality of gender and disability in the workplace, and the lived experiences of disabled employees.     

Disabled or differently-enabled? Dyslexic identities in online forum postings

This study presents a novel exploration into how people with dyslexia construct personal identities within anonymous, unsolicited, postings to an online discussion forum. An interpretational phenomenological analysis suggested three key identities: learning-disabled, differently-enabled and societally-disabled. These are discussed in terms of the extent to which they draw differentially on a discourse of disability as opposed to one of individual difference. The identities are to an extent malleable and overlapping according to context. Postings suggested overall that while some contributors constructed themselves as differently-enabled and celebrated dyslexia-related abilities, others sensed themselves having a disabled identity imposed upon them. Dyslexia is perceived as negatively construed within a society which promotes literacy and cognitive acuity as essential aspects of educational and social competence and where learning differences are poorly tolerated. In addition, this study highlights the potential of online forum contributions in the study of social influences in under-researched groups.