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Book part
Publication date: 27 December 2013

Sara E. Green, Rosalyn Benjamin Darling and Loren Wilbers

This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and…

Abstract

Purpose

This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and changes in professional training have affected research on parenting and/or the experiences of parents who are the subject of such research.

Methodology/approach

An extensive literature search was conducted, and 78 peer-reviewed, qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

Findings

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals, and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Social/practical implications

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities.

Originality/value of chapter

The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

Details

Disability and Intersecting Statuses
Type: Book
ISBN: 978-1-78350-157-1

Keywords

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Book part
Publication date: 17 December 2016

Sara E. Green

The purpose of this paper is to highlight both the value and critiques of Erving Goffman’s conceptualization of stigma as well as the emotion work needed to learn the…

Abstract

Purpose

The purpose of this paper is to highlight both the value and critiques of Erving Goffman’s conceptualization of stigma as well as the emotion work needed to learn the lessons it has to teach.

Methodology/approach

I use a personal narrative grounded in my experience as a member of the “wise” category (the mother of a young woman with cerebral palsy) and observations of the reactions of my disabled students as a vehicle for taking the reader inside the experience of the trials and tribulations of reading Goffman as a member of “marked” social categories and the more humanizing experience of reading Spencer Cahill’s work.

Findings

There remains much to be learned from reading Goffman’s Stigma. In many ways his work has set the stage for approaches to the study of disability that we are still discovering. Learning these lessons through is made difficult by the de-humanizing perspective Goffman brings to the work. He clearly locates himself and his readers in the category of “we the normals” who see the stigmatized as “not quite fully human.” For disabled students and scholars and their families, reading Goffman requires a good deal of emotion management. Reading Spencer Cahill’s work can help in that process. Goffman presents disabled students and scholars and their family members with confirmation of what we know to be true about our marked and not quite human status in the eyes of others and in the process gives us our “own.” Cahill helps us all see ourselves in the strangeness that is inside social life. There is great value in both.

Details

Sociology Looking at Disability: What Did We Know and When Did We Know it
Type: Book
ISBN: 978-1-78635-478-5

Keywords

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Book part
Publication date: 17 December 2016

Sara E. Green, Rosalyn Benjamin Darling and Loren Wilbers

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this…

Abstract

Purpose

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this summary, we explore whether shifts in academic discourse and changes in professional training are reflected in research on parenting and/or the experiences of parents who are the subject of such research. The detailed findings of the original analysis were published in Volume 7 of Research in Social Science and Disability.

Methodology/approach

An extensive literature search was conducted, and 79 peer-reviewed qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

Findings

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Originality/value

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities. The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

Details

Sociology Looking at Disability: What Did We Know and When Did We Know it
Type: Book
ISBN: 978-1-78635-478-5

Keywords

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Book part
Publication date: 13 May 2017

Sara E. Green and Shawn C. Bingham

In this chapter, we examine narratives of inclusion and exclusion told by professional performers with lifelong impairments who are successfully leading “inclusive” lives…

Abstract

In this chapter, we examine narratives of inclusion and exclusion told by professional performers with lifelong impairments who are successfully leading “inclusive” lives in order to bring their voices and experiences to the attention of academics, educators, policy makers, and service providers. We draw on stories told during in-depth interviews with 10 disabled comedians conducted as part of a larger project on the complex seemingly paradoxical relationship between disability and humor. We take an interpretive approach to our data collection and analysis consistent with principles of the emancipatory tradition in disability studies. These performers clearly value the inclusive childhoods their families provided. As children, they were educated in inclusive settings and participated in a wide variety of activities – often centering on the performing arts. Their rich and varied experiences (even the negative ones) have provided both fuel for performance and confidence to push back against attempts by others to exclude them from social and professional life in the everyday world. Their inclusive childhoods, however, are not entirely without a downside. In many cases, they did not develop a sense of disability pride, or even a disability identity, until they had opportunities to interact with others who have impairments during the transition to adulthood. For children raised in more inclusive settings, a conscious effort to provide opportunities to engage with other children and adults with impairments may be an important adjunct to inclusion.

Details

Working with Families for Inclusive Education
Type: Book
ISBN: 978-1-78714-260-2

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Book part
Publication date: 17 December 2016

Abstract

Details

Sociology Looking at Disability: What Did We Know and When Did We Know it
Type: Book
ISBN: 978-1-78635-478-5

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Book part
Publication date: 4 September 2017

Sara E. Green and Brianna Vice

The Social Model of Disability, which views social and economic barriers rather than individual bodily differences as the main sources of disadvantage faced by people…

Abstract

Purpose

The Social Model of Disability, which views social and economic barriers rather than individual bodily differences as the main sources of disadvantage faced by people living with impairments, has gained considerable traction in the literatures of both disability studies and the sociology of disability over the past several decades. Despite this success, however, concern has been expressed that there is a dearth of empirical evidence to back Social Model claims that people with disabilities are not emotionally distressed by their bodily differences or functional limitations, but rather by the layers of social and economic disadvantage imposed on top of their impairments.

Design/Methodology/Approach

Using results of a community survey in a small town in Florida, we examine the degree to which workforce participation and other social and economic disadvantages mediate the relationship between subjective well-being and the presence of functional impairments or self-described disability identity.

Findings

We find that study participants who report functional impairments or identify as disabled report lower levels of subjective well-being than participants who do not. Findings also suggest, however, that these differences in subjective well-being can be explained by lack of workforce participation and other aspects of social inclusion and economic disadvantages that are associated with functional impairment and disability identity. Results indicate that work is one, but not the only, important aspect of community participation that mediates between disability experience and well-being. Results also problematize the conflation of functional impairment and disability identity.

Implications

Findings point to a need for future qualitative and quantitative research to address differences between functional impairment status and disability identity and to evaluate the relative importance of work and other forms of social inclusion and access to economic recourses to the well-being of people living with impairments and disability.

Originality/value

Findings of this study provide empirical support for, but also add complexity to, the Social Model perspective. They can be used to provide guidance to community leaders in terms of ways in which the lives of residents with disabilities might be improved.

Details

Factors in Studying Employment for Persons with Disability
Type: Book
ISBN: 978-1-78714-606-8

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Abstract

Details

New Narratives of Disability
Type: Book
ISBN: 978-1-83909-144-5

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Book part
Publication date: 25 November 2019

Heidi Steinour and Sara E. Green

The goal of this chapter is threefold: to bring the context of disability into literature on fathering; to bring voices of fathers into scholarship on parenting children…

Abstract

Purpose

The goal of this chapter is threefold: to bring the context of disability into literature on fathering; to bring voices of fathers into scholarship on parenting children with disabilities; and to examine what individual stories about a very particular kind of fatherhood might reveal about the cultural narrative of the good father, and the reflexive nature of cultural narratives and individual stories.

Methods and Approach

Transcripts of in-depth, life course interviews with 14 parents of seven young adults, and older teens with severe impairments associated with a variety of diagnoses were analyzed using narrative analysis strategies. Transcripts of the fathers’ interviews provided primary data and transcripts of the mothers’ interviews were used as supplemental material.

Findings

Fathers included in this study drew from normative notions of masculinity and widely circulating cultural narratives of fatherhood, even while participating in caregiving tasks that are at odds with this narrative. Five specific narrative tensions that highlight cultural understandings of the “good father” were evident in these stories: (1) evoking masculinity in the context of care work; (2) providing financial security in the context of the high cost of disability; (3) maximizing potential in the context of realistic expectations; (4) protecting in the context of uncertainty and helplessness; and (5) finding a “new normal” in the context of the unexpected.

Value/Importance

Findings add to what is known about mothering children with disabilities. Results also add a new dimension to fatherhood studies by illustrating how widely circulating cultural narratives of fatherhood are adapted in stories about fathering children with life-long assistance needs, and how individual stories might serve as a platform for social change.

Details

New Narratives of Disability
Type: Book
ISBN: 978-1-83909-144-5

Keywords

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Book part
Publication date: 21 November 2011

Sara E. Green, Julia Barnhill, Sherri Green, Diana Torres Hawken, Loretta Sue Humphrey and Scott Sanderson

Purpose – The purpose of this work is to explore ways in which parents of children with disabilities actively seek to create a place for themselves and their children…

Abstract

Purpose – The purpose of this work is to explore ways in which parents of children with disabilities actively seek to create a place for themselves and their children within supportive communities of others – despite structural and attitudinal barriers.

Methodology – Semi-structured, interactive interviews were conducted with six mothers and six fathers of older teens and young adults with severe impairments. Interview transcripts were analyzed for themes related to barriers to social participation and strategies used to create and sustain communities of supportive others.

Findings – Results suggest that, while there are indeed many barriers to social participation, these mothers and fathers have successfully utilized a variety of strategies in order to create a sense of community for themselves and their children including: garnering support from family; creating enclaves of “wise” individuals; and active social networking. Findings also suggest that children with disabilities can provide opportunities for parental community involvement in unexpected ways.

Limitations, implications and value – The sample is small and selective and the study used retrospective interviews to examine parental memories. Despite these limitations, the narratives of these parents provide a provocative look at the potential role of personal agency in the community experiences of parents of children with disabilities. The stories told by these parents clearly suggest that it takes concerted effort to construct a village in the face of significant barriers to social participation. Once created, however, that village of supportive others can provide life enhancing support for children with disabilities and their families.

Details

Disability and Community
Type: Book
ISBN: 978-0-85724-800-8

Keywords

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Book part
Publication date: 25 November 2019

Abstract

Details

New Narratives of Disability
Type: Book
ISBN: 978-1-83909-144-5

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