Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities

by Aaron J. Jackson

Overview

The stories of fathers caring for non-verbal children and how these experiences alter their understandings of care, masculinity, and living a full life.

Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care undertakes an exploration of how men shape their identities in the context of caregiving. Anthropologist Aaron J. Jackson fuses ethnographic research and creative nonfiction to offer an evocative account of what is required for men to create habitable worlds and find some kind of “normal” when their circumstances are anything but. Combining stories from his fieldwork in North America with reflections on his own experience caring for his severely disabled son, Jackson argues that care has the potential to transform our understanding of who we are and how we relate to others.

Product Details

ISBN-13:	9780520379855
Publisher:	University of California Press
Publication date:	04/13/2021
Series:	California Series in Public Anthropology , #51
Edition description:	First Edition
Pages:	216
Product dimensions:	6.00(w) x 9.00(h) x 0.90(d)

About the Author

Aaron J. Jackson is an anthropologist living and working in Melbourne. His research focuses on fatherhood, care, and disability.

Table of Contents

Acknowledgments ix

1 The Practice of Care 1

2 The Depths of Time: Past Becomings and Habitable Worlds 24

Interlude Gary's Arrival Story 51

3 Between Bodies: The Fleshy Work of Caregiving 53

4 Conditions of Possibility: Fathering, Masculinity, and Moral (Re)Orientations 76

Interlude Connectivities 113

5 Belonging and Being-for-Others 115

6 The Axiom of Equality 138

Epilogue 171

Notes 177

References 187

Index 195

Editorial Reviews

03/15/2021

Anthropologist Jackson sheds light on the lives of “men caring for children with major cognitive and physical disabilities” in his vulnerable and edifying debut. Studies of fatherhood are uncommon, he writes, and “ones that deal with fathers as caregivers even less so.” Through a mix of anecdote, reported stories, and research, Jackson examines such ideas as how a child’s diagnosis leaves parents without a framework for moving forward, how hands-on caregiving can result in emotionally strong relationships, how the contemporary culture of masculinity tends to exclude men from child-rearing, and how societal shaming can erase the humanity of a disabled child. Jackson also movingly traces his experience with his son’s disability, and, indeed, the work’s strength is in the author’s ability to lay bare moving narratives that are seldom told about disability and fatherhood. (Though when he veers into the philosophical, which he often does, the transition can be jarring and the writing can be jargon-heavy.) Heavier on observations than strict guidance, this study is deeply insightful: “Perhaps one of the greatest challenges for parents is learning how to comfortably inhabit this space between things... between their meaning-rich perceptions of their children and the devaluating gaze of the other,” he muses. Parents—especially fathers—caring for disabled children will find Jackson’s survey moving. (Apr.)

Publishers Weekly

"What makes Worlds of Care a compelling ethnography is its emphasis on relations, embodied interactions, and lived personal histories – making it a notable contribution to ongoing conversations on disability and caregiving. . . .  The text’s combination of personal memoir and the phenomenologically oriented ethnography of care brings to fore the relatability of its narratives for not only men but for individuals and parents – beyond genders, sexualities, geographies, and generations, both within and outside academia."

Exertions

"Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care undertakes an exploration of how men shape their identities in the context of caregiving."

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