Disability Studies Quarterly Blog
Book and Media
Review by Amanda Apgar, Loyola Marymount University
Parents of children with disabilities often describe themselves as inhabiting an unfamiliar world. By this, they are sometimes referring to the new medical or educational landscapes they are mapping and the new language of acronyms they are learning; they sometimes mean the community of people with disabilities among whom they now find themselves in company. The “whole new world” framework is widespread, perhaps popularized by the (in)famous “Welcome to Holland” essay by Emily Pearl Kingsley, which compares having a child with a disability with departing on a long-awaited trip to Italy only to arrive in Holland, instead. Kingsley instructs that having a child with a disability brings one to a different place than expected, but that the only meaningful response is to fully inhabit that unfamiliar place: buy new guidebooks, learn the language, meet the people. Kingsley’s essay is meant to encourage, even as she emphasizes that Holland and Italy are fundamentally distinct.
In Worlds of Care; the Emotional Lives of Fathers Caring for Children with Disabilities, Aaron J. Jackson articulates less of a “Welcome-to-Holland”-variety of disability’s “whole new world” and more a series of individual portraits of men who have made their children’s care their “whole world”. Jackson makes other interventions into disability studies of parents of children with disabilities: for one, fathers are significantly underrepresented in studies of parenting and care work. The underrepresentation of fathers in this work is, of course, downstream of fathers’ relative absences and under-involvement in care labor more broadly, a point well-elaborated in literature of care work and feminist labor studies (see especially Kittay and Glenn). His subject generates a number of research questions hitherto underexplored: how does the embodiment of care labor interact with embodied masculinity? How does father-care expose gendered myths of carefulness? How does parenting a child with disabilities cause men to rethink their ideas of fatherhood? How does parenting a child with disabilities cause fathers to re-examine their own childhoods and being cared-for?
The children of the men in the study all have significant support needs, including in feeding, personal care, and communication. Their fathers have changed careers or quit working outside the home altogether, relocated, become advocates, activists, and organizers for disability inclusion, and in other ways have made caring for their disabled child their primary occupation. Jackson would have readers recognize that ensuring their children’s well-being is the center of their fathers’ lives, an orientation often wrongly assumed to be distinctly maternal. Indeed, Jackson’s primary project in Worlds of Care seems to be to shed light on the far-reaching and wholly transformative effect of dedicated, long-term care on fathers, too.
The book’s strengths are in its interdisciplinarity, multiple methodologies, and variable forms. While writing primarily with Merleau-Ponty and Heidegger on a phenomenology of father-care, Jackson also draws on narrative theory of storytelling, especially as this relates to identity construction, gender and masculinities, philosophy of the self and other, and disability politics of inclusion. The book shape shifts. It reads at times as a piece of social science, alternating interview transcripts and ethnography with analysis. But Worlds of Care is part autoethnography, creative nonfiction, and memoir, as well. Jackson skillfully constructs a phenomenology of father-care through sustained engagement with philosophy; he also writes a captivating narrative about the men in his study and about his own experiences as a father. Indeed, I would argue that the best part of Worlds of Care is the ease with which Jackson shifts from the intellectual terrain of theory to the embodiment of the everyday.
This same strength might make Worlds of Care difficult to teach. Each standalone chapter offers interesting discussions of memory, identity formation, and gender in relation to caregiving and disability, though some students might struggle to find footing amidst the disciplinary and methodological mobility. It is also worth noting that, like much parent-centered disability literature, Worlds of Care includes passages that illustrate the parent’s transformation by emphasizing the negative perceptions of disability they held before their children were born. These passages can be difficult to read. Similarly, Worlds of Care includes discussions of grief, profound despair, and suicide. In these ways, classroom conversations about Worlds of Care may be difficult to facilitate. These concerns notwithstanding, the father-centered stories in Worlds of Care make an important contribution to studies of parents of children with disabilities and especially to conversations on gender and care.
Glenn, Evelyn. Forced to Care – Coercion and Caregiving in America. Harvard University Press, 2010.
Kingsley, Emily Pearl. “Welcome to Holland.” Contact, vol. 136, no. 1, Jan. 2001, pp. 14–14. DOI.org (Crossref), https://doi.org/10.1080/13520806.2001.11758925.
Kittay, Eva Feder. Learning from My Daughter: The Value and Care of Disabled Minds. Illustrated edition, Oxford University Press, 2019.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.