JACKSON, AARON J, 2021, Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities, California Series in Public Anthropology. Oakland, California: University of California Press, 216 pp., ISBN 9780520976955.
Keywords: caregiving, fatherhood, disability, embodied disruption, masculinity and moral reorientations
While care has traditionally been narrated in dominant patriarchal discourses as a feminine task, Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities by Aaron J. Jackson invites readers to explore the often overlooked ‘fatherhood’ in caregiving. What happens when fathers become primary caregivers? Particularly those involving children with severe disabilities? Through this ethnographic research, Jackson points out that the current socio-cultural norms that reify fatherhood and caregiving as predominantly feminine work need to be revisited.
Jackson’s dual identity as both an ethnographer and a father makes the book a blend of personal memoir and ethnographic storytelling, enhancing the text’s emotional resonance. He also uses creative nonfiction inspired by Clifford Geertz’s notion of ‘faction.’ He captures the pervasive voices of fathers—some of whom are part of support groups—whose “everyday” lives are far from ordinary. Their experiences are characterized by “existential disruptions” (3) that facilitate the complex identity and selfhood formation processes. This aligns with Veena Das’s concept of ‘ordinary realism,’ (Das; 2012) in which a rupture from the ordinary reveals more profound insights into human experience. Drawing heavily on phenomenology, particularly the works of Maurice Merleau-Ponty and Martin Heidegger, Jackson crafts an embodied, relational perspective that invites readers to understand fatherhood and caregiving as intersubjective experiences.
Jackson conveys his experience of affiliate stigma and the emotional toll that he undergoes as a caregiver of a child with a developmental disability. “My son’s body became a curious public spectacle in even the most prosaic spaces of daily life, and I felt this as palpably as though it were my own. Hearing the word “retard” muttered by a stranger made my bones quake with a feeling I had never experienced before” (7). The caregiving experience ushers him to a novel understanding of the world and the society he lives in, as it broke his identity from the ‘privilege of able-bodied, racial comfort’ to one of ‘societal exclusion and prejudice’ as he now identifies with his child’s marginalization, despite not being a person with a disability. This shift in perception reveals the emotional labor associated with caregiving, which the author describes in depth in the book, noting “our presence in the world is a co-presence because the other’s emotional presence is a fundamental constituent of our lifeworld’s dynamic, often grasped through the body” (133-134). Here, the caregiver’s own identity becomes intertwined with the stigma attached to their loved one’s condition. The realization that there are layers to society, and it comes out to you depending on your identity and role, makes him rethink his position in society echoing Goffman’s discussions of situational stigma.
The book contains six chapters and two interludes; the interludes are used as transitional scenes between the chapters, though they do not contain theoretical commentaries. The first chapter, ‘The Practice of Care,’ explores caregiving as a practice and frames it as a dynamic, multifaceted role that is not merely about providing physical needs but also involves emotional, moral, and relational commitments. Chapter Two, ‘The Depths of Time: Past Becomings and Habitable Worlds,’ explores the arrival stories of children of Jackson’s participants, illustrating how past experiences and future projections shape caregiving practices. The author notes, “…. parents’ embodied emotional histories and incursions of memory lend form to the ways these moments and others are experienced in the first place and over time” (28). Here, Jackson looks at the temporal dimension of caregiving, focusing on how the past, present, and future interconnect in the experiences of fathers caring for children with disabilities. The third chapter, ‘Bodies: The Fleshy Work of Caregiving,’ is about the physicality of caregiving. “Fleshy work” (53) is both an act of connection and an experience of strain.
‘Conditions of Possibility: Fathering, Masculinity, and Moral (Re)Orientations’ is the fourth chapter where Jackson bucks the status quo of traditional masculinity, defined and characterized through excessive emotional detachment, to question what it means to be a ‘good father.’ Traditional masculine ideals — such as emotional restraint, independence, and physical toughness — are often in conflict with the emotional and relational demands of caregiving, especially for a child with severe disabilities. What catalyzes a moral transformation in fathers, pushing them to reimagine masculinity in more inclusive and emotionally engaged ways to redefine their roles and responsibilities in ways that challenge normative gendered expectations is beautifully illustrated. Jackson explores the broader implications of this shift for father-child relationships and the fathers’ sense of self. When men perform caregiving, particularly the type of caregiving that requires vulnerability and emotional intimacy, they are remaking themselves as fathers and as men, echoing Bell Hooks’ concept of dominator models of masculinity. In Chapter Five, ‘Belonging and Being-for-Others,’ the shame and stigma accompanying caregiving is discussed. However, Jackson eloquently balances by discussing the joys and burdens fathers experience with equal importance. The readers also see how fathers’ identities are shaped not by autonomy or independence but by their relational roles and sense of responsibility toward their children through the experiences shared here.
The sixth chapter, ‘The Axiom of Equality,’ advocates for equality in parenting against gendered norms in caregiving by what Jackson calls moral cosmopolitanism. The author analyses care as a moral and political issue with a focus on how “moral personhood of disabled children and modes of agency [that are] overlooked in ascriptions of personhood dependent on language, reason, and self-consciousness.” (23). Rooted in a profound social justice sense, Jackson invites readers to consider a redistribution of care work. His examination of the emotional dimensions of caregiving provides a pivotal intervention into current debates about disability, masculinity, and the politics of care. While the book helps to push back against conventional gender roles, its rollback rarely considers how caregiving can be utilized to create a more radical version of masculinity. However, Jackson does not go far enough: the question of what kinds of fatherhood might emerge through such shifts remains largely unasked and unanswered. Is there space for more feminist fatherhood that is not just emotional engagement but also caregiving that deconstructs gender patterns of labor, authority, and family power structures?
Jackson’s work adds to the conversation around caregiving and pushes against many assumptions about masculinity, emotions, and fathering that have been taken for granted. The book speaks to current debates in feminist theory and disability studies, particularly concerning politics of care. It encourages readers to reimagine caregiving as a complex, mutually entwined process. This book will be valuable for parents, scholars in anthropology, sociology, psychology, and disability studies, as well as those interested in the intersections of care and embodiment.
References
Das, Veena. “Ordinary ethics.” A companion to moral anthropology (2012): 133-149.
Woodly, Deva, Rachel H. Brown, Mara Marin, Shatema Threadcraft, Christopher Paul Harris, Jasmine Syedullah, and Miriam Ticktin. “The Politics of Care.” Contemporary Political Theory 20, no. 4 (August 24, 2021): 890–925. https://doi.org/10.1057/s41296-021-00515-8.
Acknowledgements
I am grateful to Dr. Sudarshan R. Kottai, Assistant Professor, Department of Humanities and Social Sciences, IIT Palakkad, India, for his invaluable guidance, constructive feedback, and meticulous corrections, which significantly enhanced this review.
Nazmia Ebrahim is a Ph.D. scholar in the department of humanities and social sciences, Indian Institute of Technology Palakkad. She works within the critical psychology paradigm and is interested in exploring lived experiences and social dynamics of caregiving for persons with disabilities, focusing on how cultural, historical, and systemic factors shape care practices and identities.
© 2024 Nazmia Ebrahim
