Tensions of Trans-institutionalization in Disabled Childhoods: A Photo Essay (original) (raw)
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In this process-oriented article, the authors weave short personal narratives with theoretical reflections to examine the relationship between Disability Studies scholarship and parenting children with disabilities. The authors present three findings: first, their position as parent-teacher-scholars informs their work in Disability Studies. Second, the work of Disability Studies scholars has the potential to positively influence parents' understandings of disability; consequently, Disability Studies-informed parenting can influence parent advocacy for their children. Third, parent-scholars have the potential to create research that can positively impact parents, practitioners, and the field of Disability Studies. The authors conclude by arguing that there is a need for Disability Studies scholarship for and by parents. This work is significant because it challenges divisions between theory and practice, and articulates a need and responsibility for parents to grapple with alternative understandings of disability and alternative (collective) ways to create better social conditions for their children.
2016
OF DISSERTATION RETROSPECTIVE FRAMES OF DISABILITY: THEMES DERIVED FROM PARENTS OF CHILDREN WHO GREW UP WITH CONGENITAL DISABILITY Introduction: For children born with physical disabilities, the perspectives and actions of their parents prove significant to their childhood developmental outcomes clinically, educationally, socially, and with regard to community participation. The lived world and perceptions of parents who have children with disabilities however is not well investigated. This study sought to understand parents’ framing of theirs and their children’s disability experiences. Family systems together with family systems intervention models, and disability theory were used to provide structure to interview instrumentation and subsequent analysis. Child-centered and ecologic influences were also used to track the transformative processes over time that infuses parental themes. Methods: Methods for this study followed traditions of heuristic phenomenology. Openended parental...
2008
The intent of this dissertation was to move toward a constructive grounded theory that portrayed the ways in which parents of preschool children with disabilities make meaning of their children"s social relationships. The rationale for this inquiry emerged from the confluence of four complex discourses: typical child development discourses with particular attention paid to the importance of social development; family discourses with particular attention paid to the role of the family in a child"s social development; disability discourses with particular attention paid to the unique challenges families face in supporting the social development of their children with disabilities; and early childhood special education discourses related to family-centered approaches to educational intervention. Narrative vignettes were used to present the ground of the study. These vignettes were generated from conversational interviews with parents of preschool children with disabilities. Emerging meanings were constructed using a number of conventions of grounded theory analysis and include four conceptual categories: choosing your own reality, holding onto hope, striving to make connections, and struggling for recognition. Additionally, the core concept of living with "shifting pictures" in a kaleidoscopic world v is discussed. This kaleidoscope metaphor is utilized as parents seem to struggle to find a place of belonging for their children represented by symmetry, while simultaneously struggling to avoid social isolation represented by asymmetry. However, as the research process moved toward culmination a variety of issues began to surface including a narrative shift from the more specific understanding of social relationships to an understanding of the myriad of concerns families face when parenting a preschool child with a disability. These concerns are discussed along with a critique of my use of interpretative grounded theory methods. Implications for practice include the reframing of normal, and the use of empathetic witnessing and reflection as core concepts of early intervention pre-service training and practice. Possible directions for future study may be the effects of HIPAA (the Health Insurance Portability and Accountability Act) and FERPA (The Family Educational Rights and Privacy Act) on the social relationships of children with disabilities, and an exploration of what sense of belonging parents may or may not have for their children with disabilities. vi
Disability Studies Quarterly, 2013
Historically, research on families of children with disabilities has been framed by the medical model, which views disability as a biological deficit, necessarily associated with burden and grief. This body of research does not acknowledge the sociocultural contexts in which the meaning of disability is embedded, or the manner in which deficit-based hegemonic discourses shape the familial experience of having a child with a disability. In this paper, we problematize the medicalization of the phenomenon of disability and resulting research inquiries. We propose the use of narrative inquiry, theoretically grounded in sociocultural perspectives, as a critical research methodology for situating the lives of these families in cultural and sociopolitical contexts. Narrative inquiries complicate conclusions drawn from the medical model and contribute to new insights on the ways in which interpretations of having a child with a disability are mutually negotiated between individuals and society.
The present study examined the dynamic and complex nature of raising children with disabilities focusing on the processes that mothers went through as they came to embrace their children within their family life context over time. Narratives of parenting experiences were obtained via in-depth interviews of eleven mothers whose children were at different ages, ranging from 6 to 35. Their narratives showed that the process of embracing the child's disability is gradual. Many mothers in this study were fully aware of their children's limitations but at the same time, looking for better ways to support them. As mothers mature in their roles as caregivers and are able to transform their perspectives through a deliberate reflective process, their children can also become partners with their mothers and self-advocates who seek to take charge of their own lives in the midst of life challenges. The findings in this study pointed to the importance of a process-oriented approach with a strength-based focus while considering contextually rich family dynamics and how they change over time.
Societies
The right to live in the community is fundamental and is directly related to the possibility of independent living for persons with disabilities, a central principle of the UN Convention on the Rights of Persons with Disabilities (CRPD), ratified by Bulgaria in 2012. The opposite of these principles is living in an institution, and being compelled to reside in a space where one does not have the ability or one is not allowed to exercise control over one’s life and day-to-day decisions. Through oral history and anthropological reconstructive analysis, with a special focus on the cultural contexts and social meanings of personal experience, we explore how families of children with disabilities are simultaneously victims of the local disabling legacies, environments and practices, and key agents that effectuate and perpetuate institutional culture. We highlight the dynamics and interactions of the traumatic images on the legacy of state socialism, the actual barriers during the transit...
Journal of Child and Family Studies, 2015
The present study examined the dynamic and complex nature of raising children with disabilities focusing on the processes that mothers went through as they came to embrace their children within their family life context over time. Narratives of parenting experiences were obtained via in-depth interviews of eleven mothers whose children were at different ages, ranging from 6 to 35. Their narratives showed that the process of embracing the child's disability is gradual. Many mothers in this study were fully aware of their children's limitations but at the same time, looking for better ways to support them. As mothers mature in their roles as caregivers and are able to transform their perspectives through a deliberate reflective process, their children can also become partners with their mothers and self-advocates who seek to take charge of their own lives in the midst of life challenges. The findings in this study pointed to the importance of a process-oriented approach with a strength-based focus while considering contextually rich family dynamics and how they change over time.