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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.

Liat Ben-Moshe is a postdoctoral fellow in the Department of Disability and Human Development at the University of Illinois at Chicago. Her dissertation, as part of a PhD in Sociology and Disability Studies at Syracuse University, examined abolitionary demands to close down repressive institutions that house those labeled as criminals, mentally disabled, and mentally ill. Liat has written on topics such as the International Symbol of Access, inclusive pedagogy, academic repression, disability, anticapitalism and anarchism, queerness and disability, deinstitutionalization and incarceration, and the politics of abolition.

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.

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.

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.

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.