". . . presence, tactile gentleness, and open-mindedness . . ."
Learning from Aaron J. Jackson's Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities (2021)
It is in the moral practice of giving care, in the doing, thinking, and feeling, that fathers come to understand their lives and those around them.1
Among the books I read this year, Aaron J. Jackson’s Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities (University of California Press, 2021) is my favorite. Jackson is an anthropologist from Australia whose work focuses on fatherhood, care, and disability, and his research is intimately connected with his own experience as father of a severely disabled child and as someone who has experienced radical dependency himself at the hands of Lyme disease.
Jackson blends personal memoir with anthropological investigation into the intimate lives of other fathers who also care for children with major cognitive and physical disabilities. These children, whether still in their youth or already young adults, depend on their dads’ daily support to navigate the world, in light of such things as pervasive developmental delays, seizures, and ongoing diapering. Worlds of Care tells the story of how these dads understand their own lives and the rhythms of care that provide the ground for meaningful interaction and connection between father and child. It’s the book Jackson says he wishes he could have read when his own disabled child was born.
The book is, in part, a work of academic scholarship, so it won’t be for everyone. Jackson draws gracefully on the phenomenologies of Martin Heidegger and Maurice Merleau-Ponty and places these in conversation with philosophical and other research into the nature of care and human interdependence. As a stay-at-home dad with a background in the philosophy of education, this is the sort of thing I hugely enjoy reading, and Jackson’s use of Merleau-Ponty in particular to honor and unpack the bodily and moral dimensions of caring fatherhood makes me giddily happy. But even if academic scholarship isn’t your usual cup of tea, if you’re willing to dig in, Jackson’s prose is luminous, especially his rich descriptions of intimate interactions between fathers and their children.
The basic argument of Worlds of Care goes as follows:
Having a severely disabled child radically disrupts a dad’s expectations about the future, himself, and the welcome that he and his child will receive from the rest of the world. As a result, they must reinterpret the meaning of their lives in response to the concrete and ongoing needs of their children.
These men grow into their caregiving lives through the intimate, everyday acts of their bodies, whether “routine feeding, scaffolding motor tasks and learning experiences, or holding and comforting a child through a seizure.”2 As they become ever-more attuned to the practical needs of their children over time, shared meaning blossoms and deepens between parent and child.
As father and child attune themselves to one another, dads must also reckon with cultural assumptions about masculinity and personhood they once took for granted but which now stand in the way of their becoming the dads their children need—assumptions that often devalue caregiving, vulnerability, and the disabled. And this opens up opportunities for moral courage.
I’d like to dwell on that second point for a moment, because its implications are vital for all parenting—and because it’s the source of some of Jackson’s most evocative prose. I’ll focus here on two passages from the book that illustrate mutual attunement between father and child.
First, Earl feeds his son, Zachary, a plate of pancakes, while talking with other fathers of disabled children over breakfast.
There’s a rhythm to the feeding: a joint awareness to the activity, even though neither Earl nor Zachary are attending to it explicitly. Zachary chews and swallows the forkful of pancakes he has been given and then opens his mouth for more. Earl scoops pancake pieces onto the fork and brings it back up to Zachary’s mouth. Zachary doesn’t have to wait with his mouth hanging open . . . . Sometimes Earl brushes excess food off Zachary’s lips before it falls, or anticipates spillages before they occur.3
All of this happens while Earl is talking with the other dads, and that conversation is his conscious focus. But thanks to countless hours of caring action over time, Earl and Zachary’s movements are carefully coordinated in the background, toward the substantive goal of nourishing the child.
Second, Jackson and his own son, Takoda, walk and kick a soccer ball together using an apparatus that allows them to link up and coordinate their movements, as one:
My feet are fastened to Takoda’s in a pair of joining sandals. I stand and adjust the tension in the straps so that our bodies are positioned correctly and are in alignment . . . coupled by a web of material, Velcro, and plastic . . . . Slowly, we find a rhythm and begin moving as one . . . . At times I lead. At others I trail . . . . Sometimes we move in unison and it’s hard to differentiate. We kick a soccer ball . . . . ‘Hey,’ I beam. He squeals and looks up at me. His face is awash with joy and his eyes are full.4
I find these two passages absolutely inspiring, for they evoke powerfully how the simple acts of a parent’s body—oriented patiently toward the child and offered, as Jackson puts it elsewhere, in a spirit of “presence, tactile gentleness, and open-mindedness,”5—form the ritual ground for shared meaning and trust between parent and child. Jackson is teaching us that a parent’s identity as a caregiver emerges and solidifies through just such moments of steadfast presence, within the interactive dance between parent and child, and reading Worlds of Care primed me to notice and attend with greater care to my rhythms of presence and attunement with my own children.
I also appreciate Jackson’s exploration of how exhaustion and hope are interwoven throughout the father-child relationships he explores. Exhaustion is part of the journey: as one dad puts it, “I’m into this twenty-three years . . . I’m fifty-six and I have to worry about whether Pearl will outlive me.”6 Still, these dads learn to discern, without condition, the everyday possibilities for connection and surprise with their children, exactly as they are. They also learn to reach out in solidarity toward other caregivers of severely disabled children, whether by starting a parent support group, keeping a blog, or advocating for policies that would improve the lives of families such as theirs.
Indeed, Jackson’s own book is an exemplar of this public-facing hope, for it demonstrates in vivid terms that severely disabled children are co-participants and moral agents in the meaningful activities that bind parent and child. His thick descriptions of interaction and shared meaning between dads and their children, such as the two stories I highlighted above, put the lie to ableist ethical philosophies that would deny full personhood to cognitively disabled people who can’t, say, read and argue about ableist ethical theories.
Finally, I want to highlight two points on which Jackson’s book has pushed me to dig deeper in my own thinking about fatherhood.
First, I’ve sometimes been asked why I focus so much on masculinity, when all parents, in some form or another, are challenged by the judgments of others, sometimes struggle with reactivity or resistance to the lived demands of caregiving in the moment, and endure crises of meaning. I don’t feel I’ve ever answered this question adequately, except to try to demonstrate the value of doing so through my own story-telling.
Jackson offers a great answer. He explains that cultural ideas about masculinity and manhood, especially as embodied by other figures in a man’s own life, put formative constraints on how men are prepared to interpret and understand their lives and their value as they enter parenthood. So, when men devote themselves to caregiving—whether full-time or in conjunction with other work, whether by choice or by no choice, and especially when the calling to do so is highly intensive, as for the dads of severely disabled children—they must reconcile the cultural backdrop against which they were taught to define themselves as men with the lived habits of care and connection that will enable them to thrive as caregivers, with this child, here and now. Depending on the man, this may entail a substantial disruption and reorientation of his values over time (and perhaps also a corresponding friction with his extended family and other relations), or it may be a journey of learning how to actually live out values that he already embraces in principle. But the underlying cultural task is inescapable, and that’s why talking explicitly about fatherhood as a process of learning and identity formation is important.
Finally, Worlds of Care made me revisit and question the personal definition of fatherhood that I offer in Fatherhood Is Learning, which describes fatherhood as “the courage to reflect and learn what kind of man my kids need me to be, so I can respond to them fully as they are—and as they wish to become.”7
On the one hand, my definition’s emphasis on reflection, attention, curiosity, and responsiveness to the realities of the present, in terms of the real child in front of me, resonates strongly with the journeys of the fathers in Jackson’s study. But the last bit about responding to the child “as they wish to become” gives me slight pause and requires some unpacking. Let me explain.
As I noted above, Jackson’s book is a powerful rejoinder to ableist ideas about what makes a life worth living. In one part of the book, he writes eloquently about the judgments that parents of severely disabled children receive—including from other parents of disabled kids—about whether they have truly “exhaust[ed] every opportunity” to improve the lives of their children. Such judgments presume that only a life of maximizing self-determination and achievement is worth living. Jackson calls us to ask: what if “seeking to live a good life in terms of self-determination and choice,” as conventionally imagined, “is not an option” for a particular child?8 Surely the parents of such a child are not failures if, instead of seeking yet one more remedy to “fix” their children, they see their children as fully human already and focus on the real possibilities for joy and connection in their kids’ daily lives.
I dwell on this because, after reading Worlds of Care, I asked myself whether the definition of fatherhood I’ve offered to others as a framework for reflection is subtly ableist. To my ear, at least, the phrase “as they wish to become” does have an ablest whiff about it: many parents (including me, in my less mindful moments) would all-too-easily interpret this language in terms of fostering a child’s growth into a life of self-determination and achievement.
However, I don’t think this is the most charitable or meaningful interpretation of the phrase. I see “as they wish to become” as an invitation to imagine futures through the experience of the child who is, to be curious about the child’s own horizons of meaning on their own terms, and to accept that these futures are theirs, not ours. And while this might, depending on the situation, involve helping a child along the way to self-determined achievement, it should always be a journey of fostering healthy conditions whereby meaningful connection and belonging can continue to flourish.
Understood in this way, I hope that the personal definition of fatherhood I’ve put out into the world resonates well with Jackson’s plea for us to imagine human flourishing beyond ableism. Still, though, I might have tweaked a few words, if I’d read Jackson’s book earlier. Without question, Worlds of Care has deeply influenced how I will unpack that definition in the future.
That’s what I love about Worlds of Care: it cuts directly to the moral core of what it means to act on behalf of, and in co-participation with, one’s child.
Read it.
Aaron J. Jackson, Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities (Oakland, CA: The University of California Press, 2021), 12. https://www.ucpress.edu/book/9780520379855/worlds-of-care
Jackson, 58.
Jackson, 56–57.
Jackson, 63.
Jackson, 109.
Jackson, 157.
See the Prologue of my Fatherhood Is Learning: Becoming the Men Our Kids Need Us To Be - a memoir in essays (2021):
Jackson, 157.