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.     

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.     

“Phil's Calling Grandma… ”: The Role of External Support in Human–Companion Animal Identity Pairings

This exploratory paper deals with human–animal role identity pairings such as parent–child or sibling–sibling and the necessity of support from other actors both for the formation of these idiosyncratic identities, as well as for their situational placement in social environments not limited to the nonhuman animal. Taken from a qualitative study examining identity formation counter to the nonhuman animal, I use in‐depth interviews of both people with and without human children to demonstrate how human‐to‐human relationships are formed by categorizing the companion animal as a “child” of sorts within the family structure. These relationships prove integral to the continued development and enactment of identities such as the animal “parent” or the animal “sibling” via three different groups: their own parents, partners, and, in one case, adult siblings. This creates positive affect and commitment to the identity across other social situations. Implications of these findings for identity theory and family research are discussed.     

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

‘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.     

Digital identities – overcoming visual bias through virtual embodiment

ABSTRACT

This study sheds new light on the role of identity in virtual environments when virtual representation of self is in support of disabled individuals and the potential impact of their virtual identity on work opportunities. It is widely understood that individuals who live with disability often experience a lifetime of bullying, exclusion, marginalization and rejection. They often experience workplace bias and discrimination. Yet, when they can create an identity and experience embodiment in virtual environments, the results can be extraordinarily powerful – even life-changing. This research builds on nearly a decade of ethnographic research in 3D online immersive social virtual worlds; seven of those years working with disability communities to answer the following: RQ1: In a virtual world where one can choose any avatar form, how does that visual sense of self-representation influence one’s ability to gain access to a social network, to be a leader in that network, and to find work? RQ2: How does realism in representation influence work experiences in these digital worlds? The results reveal the importance of choice in online representation of avatars in creating work and online social engagement. Implications contribute to our understanding of visual bias in the workplace and how emerging virtual reality technologies may open new avenues for meaningful work and social interactions for 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 as Providers of Support and Care during Middle Childhood: Children's Perceptions

This article describes some of the findings of a study undertaken to seek the views of 69 Scottish primary school children of their sisters and brothers. The study found that siblings were perceived to be a significant source of support and help to the children. Sibling support was particularly important to children with few other supportive relationships. Sibling caretaking which was viewed primarily positively both by the caretaking and looked after children, was found to be a common experience among the nine to 12–year-old children. Negative consequences of sibling caretaking included annoying, domination and abuse by siblings. Although over a quarter of the children's siblings were not living in the Same household, the majority of children perceived siblings to hold a special importance in their lives. Issues raised for parents and professionals concern the maintenance of relationships between siblings who do not live together; how to enhance the supportive aspects of sibling relationships, while offering protection against the negative aspects of sibling dichotomy; and facing the reality of sibling caretaking. Much more needs to be known about children's everyday experiences of growing up with their sisters and brothers, if we are to understand more fully the complexities of sibling relationships.     

Evaluation of a multi-site program designed to strengthen relational bonds for siblings separated by foster care

Sibling relationships in foster care settings have received increased attention in recent years. Despite growing evidence regarding the protective potential of sibling relationships for youth in care, some sibling groups continue to experience foster care related separation, and few programs exist to address the needs of these youth.This study describes and evaluates Camp To Belong, a multi-site program designed to provide short-term reunification to separated sibling groups through a week-long summer camp experience. Using a pre-test post-test survey design, this paper examines changes in youth ratings of sibling conflict and sibling support across camps located in six geographically distinct regions of the United States. The effects of youth age, number of prior camp exposures, and camp location were tested using multilevel modeling procedures.Findings suggest that participation in Camp To Belong may reduce sibling conflict, and improvements in sibling support are noted for youth who have had prior exposure to the camp’s programming. Camp-level variance in the sibling support outcome highlight the complex nature of relationships for siblings separated by foster care, and suggest the need for additional research. Lessons learned from this multi-site evaluation and future directions are discussed.     

Considering Alternate Sources of Role Identity: Childless Parents and Their Animal “Kids”

Identity theory posits that role identity is negotiated between human social actors and is based in broader cultural expectations about how particular statuses should be performed. I argue that the formation of role identity in actors can also occur in relationship to nonhuman actors, if they are perceived as minded. Depending on context and human perception, identity can be formed as a result of interaction and developing “theory of mind” with nonhuman animals, directly implicating the animal. Using in‐depth interviews of childless and childfree companion animal owners, I demonstrate the existence of a parent identity in childless participants that would not otherwise be present were it not for interaction with the animal “child.” This identity is confirmed in participant narratives describing substantial behavioral output aligned with the U.S. cultural ideal of “parent.” Likewise, I find that significant others provide external support for the enactment of this role identity, allowing participants to verify self‐in‐situation. Overall, my analysis emphasizes the importance of considering nonhuman sources as occupying counterstatus positions in the formation of role identity while highlighting how these relationships affect interaction in the childfree and childless home, thus expanding scholarly understanding about both identity formation and emerging family types.     

Predicting supportive behavior of parents and siblings to a family member with intellectual disability living in institutional care

This feasibility study examines whether the theory of planned behavior can predict supportive behavior provided by either parents to their offspring-or adult siblings to their brothers and sisters-with an intellectual disability living in 2 Israeli institutional care facilities. Participants were 67 parents and 63 siblings who were interviewed at baseline regarding their intentions to visit their offspring or sibling in the institutional care facility, to contact the caregiving staff, and to accept visits at home. Parents' and siblings' behavior regarding visitation and supportive behavior was examined after 6 months by caregiving staff. Core findings indicated that subjective norms in siblings and parents predicted frequency of home visits. Perceived behavioral control predicted frequency of contact between siblings and staff. Differences between parents and siblings regarding their supportive behaviors are discussed with respect to social work practice.     

Using Attachment Theory When Placing Siblings in Foster Care

Attachment theory offers a useful model for determining if siblings removed from their birth parent's home and awaiting placement should remain together or be separated when placed in foster care. The paper draws from the attachment theory literature, social work literature, and the author's experience as an outpatient psychotherapist. Using the concept of a secure attachment environment, this paper argues that siblings can potentially contribute to, or detract from, a secure attachment environment. When siblings are supportive of each other they can contribute to it. When the sibling relationships are chronically abusive, the individual siblings within a sibling-set are precluded from achieving a secure attachment environment. In these cases the need for separation of the siblings is indicated, and must be considered.     

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.     

Sibling Discord: A Force for Growth and Conflict

Drawing on research findings and clinical experience, this paper considers the contributions that sibling envy, jealousy, and rivalry can make to healthy development as well as the way in which sibling discord may compromise development and in some cases lead to pathology. An account of the treatment of a depressed and anxious woman, Marcia, whose pain and rage at being displaced by her 4-year-younger brother contributed to her pathology, is offered. Through attention to sibling transferences, countertransferences, and the enactments that occurred during the treatment, the paper demonstrates how an individual may misperceive and misrespond to her children as well as her therapist as if they were a sibling rival or the mother who they experienced as rejecting them in favor of a brother or sister. The paper attests to the importance of recognizing siblings as persons in their own right who hold an important place in each other’s minds, rather than as simply displacement objects for parents, as they were often regarded in the past.     

Calling forth disability in the classroom

Disability theory discusses the interplay between impairment and disability as though they can be identified separately. More recently, scholars in the field have sought to move beyond the dichotomy to an interactional model. This article uses evidence from a longitudinal ethnographic case study to demonstrate how notions of interaction and relation need to be understood within context. Socio-cultural theory makes explicit a situated understanding of participation and experience and demonstrates how classroom environments ‘call forth’ disability. Findings reveal how classrooms as educational contexts mediate the experience of a student with a learning impairment. The evidence shows how a classroom draws on the wider regimes of competence at the institutional level to create particular experiences for students. The challenge for teachers and other support staff in schools is to reflect on and influence the dynamic of impairment/disability within their classroom and school context in order to support appropriate participation and learning.     

Sibling Relationships in Middle and Older Adulthood

Abstract

Research on various aspects of the sibling relationship in adulthood, with a focus on middle and older adulthood, will be reviewed. Attachment theory, which has often been utilized to explain relationships among siblings, will be discussed. Equity theory, as it relates to siblings' roles as caregivers, will also be examined. Closeness among siblings, social support, elderly siblings, and death of a sibling are among the specific topics that will be addressed. A number of factors contributing to the quality of the sibling relationship will also be considered. These include the gender and marital status of the siblings. Finally, future research ideas concerning adult siblings will be suggested.     

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 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’.