Just Care: Messy Entanglements of Disability, Dependency, and Desire (Akemi Nishida)

Reviewed by Dana Cloud

Content Warning: This review contains descriptions of exploitative and oppressive institutions, systems, and language.

Emerging scholarly and activist work from disability justice communities has brought the questions of how care for, with, and by disabled people happens—and doesn’t happen—in contemporary capitalist society. For example, Shayda Kafai (Crip Kinship, Arsenal Pulp Press, 2021) and Leah Lakshmi Piepzna-Samarasinha (Care Work, Arsenal Pulp Press, 2018) have described how queer, disabled care collectives challenge the terms of neoliberal capitalism, a system characterized by austerity, debt, and the privatization of all formerly public goods, including health care. Built upon the principles of disability justice (intersectionality, self-leadership, the wholeness of each person, sustainability, anti-capitalism, solidarity, interdependence, and collectivity), such work not only describes projects of just care but also describes how a radically interdependent vision of care emerges as a radical political alternative to neoliberalism’s void of care.

Akemi Nishida’s Just Care: Messy Entanglements of Disability, Dependency, and Desire is an invigorating intervention into this conversation. Nishida asks a number of urgent questions, including how our society and the regimes of governance operating in it determine whose needs are sacred and whose lives are disposable, whose needs are met and whose are ignored, and how caretaking happens (and does not happen) in our society. She describes the ideologies of deservingness, independence, personal responsibility, and gender essentialism that determine who does and does not receive care and stigmatize those needing care. In addition, she explores how the care practices of an unjust society become mechanisms of oppression while also being “a tool which marginalized communities activate, engage, and sustain social justice fights” (6). This nuanced oscillation between disability understood as both structural incapacity and resistant capability characterizes the unfolding of this book.

A significant strength of this book is Nishida’s distillation and definition of theoretical concepts from disability studies, postcolonial feminist theory, theories of biopolitics and necropolitics, and affect theory. Paramount among these is care, defined as the energy and time we spend in intention to contribute to others’ well-being, vitality, and lives. “Care is relational. It ties together humans and living and nonliving entities. It manifests in physical, material, financial, emotional, cognitive, and spiritual care. It transgresses time and space. It is intergenerational and subjective.” At the same time, Nishida warns, “What one person thinks of as caring can be experienced by others as violence, control, pity, or debt.” Moreover, care is racialized and gendered, tangled in the power dynamics of colonialism, cisheteropatriarchy, and the neocolonial and ableist economy (14).

A second core definition central to this book is disability: the label given to those occupying identities recognized as disabled in a system that requires disabling conditions. The category of “disabled people” consists of “anyone who actively identifies as disabled, those who do not identify as disabled but experience disabling conditions, and those who are assumed to be and labeled as disabled.” In this context, “ableism includes discrimination against the mad, autistic, and otherwise pathologized bodyminds” (30).

Another definition of disability emerges during Nishida’s discussion of affect theory, which explores how sensual embodied experience is a source of knowledge and care. This theory captures how fluctuations in energy are part of the bodymind. Here disability is defined as that experience of capacitation and decapacitation at a visceral level. Drawing on the critical queer work of Jasbir Puar, Nishida describes how such bodymind experiences are products of “exploitative labor conditions, racists incarceration, policing practices, militarization, and other modes of disenfranchised enfranchisement [a compelling turn of phrase].” Disability is at once a product of pathologization, criminalization, dehumanization, and interlocking oppressions and “inherently transgressive, nuanced, and full of crip wisdom” (27).

Nishida’s book is uncommon in its consideration not only of the experiences of those positioned in the system as receivers of care but also of the exploitation, oppression, and disablement of those tasked with care labor in an under-resourced system. Nishida provides eloquent explanation of how what she calls a “care assemblage”—a patterned configuration of institutions, relations, and dynamics—operates in the United States in particular (43).

In the retreat of the state from the provisioning of care and the intensifying privatization of health care, the public resources of the Medicaid system are diverted into for-profit managed care operated by agencies that hyper-exploit workers, who themselves are disproportionately migrant women from the Global South. The care industrial complex subcontracts care work and profits from government resources diverted to it. In this assemblage, care workers recount being treated as mere bodies to fill positions, constantly debilitated in a situation defined by necropolitics: the socio-political power that controls people by regulating their proximity to death (79).

Even when managed by government agencies, the precarious enrollees in Medicaid and other assistance programs are subjects of surveillance, control, and humiliating processes of qualifying for such aid—being constructed as either the deserving or the burdensome, undeserving disabled (44). When people of color, the poor, and the very sick—and primarily poor, sick, people of color—access resources like Medicaid, they become vulnerable to even greater surveillance and control.

Despite the caregiver-receiver dichotomy being defined in the contexts of exploitation and ableism, Nishida argues, some of the care workers and Medicaid enrollees she observed formed intentional, reciprocal caring relationships as bodily tasks are jointly and routinely accomplished in a co-capacitive way. In what she calls haptic relationality, people situated in such relationships develop bodily, sensual, collaborative relationships out of mutually experienced oppressions (100). Nishida acknowledges that the data (for lack of a better word) supporting this description are thin due to difficulties in interviewing care workers whose shifts are long and unpredictable and whose fatigue is profound. Even so, given the weight placed in this chapter on the disabling conditions of the U.S. care assemblage, without benefit of more descriptive accounts, it is difficult to see the enrollee-care worker relationship as a site of significant agency or hope.

More hopeful is the subsequent chapter on community-based care collectives. Such collectives have proliferated in North America from the 2000s to the present day. These collectives have been formed and sustained by disabled people who were fed up with the injustices of the neoliberal care assemblage. Some collectives seek to fill the care void left by the neoliberal state, while others emphasize shared experiences and events.

Drawing from her own experience in such collectives, Nishida describes how intentional collectives entangled in the mutual and reciprocal processes of care engage in a form of messy dependency, a conception of interdependency that is not a clean-cut reciprocal relationship but rather a political arrangement in which desire and agency are claimed in defiance of the neoliberal order and the norms of independence and productivity that work to discipline disabled people (130). Nishida appreciates but challenges the impulse of the independent living movement in favor of collective enactment of community-based mutual care (133).

Messy dependency is characterized by complex entanglements of desire and expectations. Sometimes nurturing becomes a demand. Sometimes there is pressure to enforce quantifiable reciprocity. Sometimes members discriminate against others on the basis of “likability,” for example, against people with mental disabilities that challenge harmonious affective norms (147). People in care collectives are not immune from the influence of cisheteropatriarchy. Even so, Nishida’s account reveals entangled relationships of dependency and interdependency that are complicated, rich, unruly, and generative. In this account, Nishida adds to the knowledge and recognition of such care collectives, including the collective Sins Invalid, which is the subject of books by Leah Lakshmi Piepzna-Samarasinha and Shayda Kafai.

Nishida raises the question of whether and how such collectives can make demands of the broader system, including improvements in public assistance and reforms affecting accessibility and inclusion. She argues that of course, we ought not let the neoliberal system off the hook. She mentions the Black Panther Party for Self-Defense (17) and the Street Transvestites Action Revolutionaries (STAR, 19) as mutual aid collectivities that were also outward-facing political projects. This discussion resonates with Dean Spade’s work Mutual Aid (Verso, 2020), in which Spade argues that mutual aid collectives are preparatory for and enabling of political direct action. However, there is no discussion in Just Care about how the collective care communities of the disabled might foster a transition into public action.

Nishida’s book poignantly taps the simultaneously agentive and constraining dimensions of care practices in the United States and acknowledges the limits of collaborative care relationships and communities as a response to the neoliberal void. Her argument opens the way for additional questions about how people situated as disabled in our society can discover and build spaces for education, radicalization, mutual aid, and direct action. The existence of radical care collectives informed by the principles of disability justice is powerful. Yet, how many people situated as disabled in capitalist society have access to intentional care collectives? Who has the resources of money, time, attention, and energy to form alternative spaces of providing and receiving care? As Nishida notes, the poor, Black, and Brown are overrepresented among the population designated as disabled. The necessity of accessing even meager health care resources and navigating day-to-day survival might render the idea of intentional care collectives as utopian and out of reach.

Moreover, the founding of care collectives explicitly on the principles of disability justice may mean that only those who already share those principles—those who have had access to political, cultural, and social movement education leading to a multi-dimensional political framework—would be the constituents of such groups. But how do people arrive at a complex political analysis necessary to initiate or even join such collectives? And would the arrival of larger numbers of people be sustainable in collectives that are, by definition, limited in both number and ideology?

Finally, how are care collectives engaged in work that challenges the neoliberal state to extend resources enabling people situated as disabled to make a live-able life? We know from the history of disability rights and disability justice movements that communities of care arising from the independent living movement; struggles against institutionalization; struggles for access to equal education, employment, and public space; and many other efforts have bloomed into mass collective direct action with observable impact on the law and social norms. For example, ADAPT’s public demonstrations in the lead up to the passage of the Americans with Disabilities Act had a significant role in that victory.

Nishida might rightly caution us against getting caught up in the structuring dichotomies prescribed by neoliberal, cisheteropatriarchal society between public and private and between care and politics. Of course, the existence of disabled bodyminds is always political as a “fuck you” to the profit system’s demand for very particular kinds of productivity. To exist, Nishida points out, is to resist. This assertion is one of the main points of the book’s final chapter on bed activism: bed-centered critique of social oppressions emerging from people’s bed spaces in the moments of social movement building, writing, and practicing self-care, making art or making love (especially when the bodyminds engaged in lovemaking are stigmatized), and in less active moments of enduring pain, depression, and fatigue. These experiences are all sources of insight and knowledge that can lead to political organizing and powerful culture work from bed spaces. Bed activism is the “analysis, resistance, and vision emerging from beds by those whose oppressions, marginalizations, and transformative visions are deeply tied to bed” (159). Bed activism is a form of crip wisdom. Beds can be defiant spaces, as are collective care communities.

This insight resonates deeply with me. I identify as a mad, queer, revolutionary socialist. I often suffer periods of depression—moving and thinking slowly, requiring rest, and experiencing internalized ableism that tells me that I should be more productive both professionally and politically. My experience generates insight about the roles of gender oppression and the imperatives of neoliberal capitalism in my suffering. At the same time, I suffer in ways that limit my capacity to challenge those imperatives. I think it is important to recognize how defiance from spaces of limited activity is political while also recognizing the difficulty of participating in the public, collective defiance that might challenge the system as a whole.

The principles of disability justice include the value and necessity of solidarity across oppressions and struggles. Every oppressed, excluded, violated, exploited, and marginalized group in history has organized for inclusion, integrity, justice, and liberation. Every minority has rightly demanded solidarity from more privileged groups in order to succeed. This is how people claim agency from positions of socially structured disablement to press for change.

Justice seekers operating from the privilege of broader mobility should operate on the Marxist principle of “from each according to their ability, to each according to their need.” The care collectives Nishida and others describe enact that principle continually within their communities.

Other Left organizations and movements must also practice this principle in solidarity with care justice work in ways that can circulate the knowledge of bed activists across movements and communities, afford time and space to intersectional consciousness raising, and bridge care work with direct action. In very practical terms, this would mean making coalitional political meeting spaces fully accessible to all bodyminds, including accessible spatial arrangement and access, the provision of virtual participation options, ASL interpretation and CART or other live transcription, audio versions of written content, and descriptions of images and other visual materials. It would mean understanding when a person cannot always engage in routine organizational work—or, it would mean changing organizational routines and fully “counting” the contributions of people creating and circulating knowledge from beds or chairs as integral and valuable.

It would mean making every public protest event accessible: pacing marches to enable those using wheelchairs and other mobility devices to participate fully during—and, indeed, lead—processions; providing ample accessible toilet and washing facilities; providing ample seating at all events; providing rides along march routes for anyone who needs them; and providing emergency health care at all such events.

It would necessitate potential coalitional partners/accomplices asking what everyone needs and wants. Perfection is impossible. However, even well-intentioned (and often nondisabled) social justice activists have been leaving disabled people in the dust. Instead of counterposing public direct action with the practices of care, we might ask what it would take to eradicate that divide by broadcasting the knowledge and pressing the demands of disabled people among our coalitions. Moreover, those committed to social justice should be in solidarity with demands to hold the system accountable for the provision of care, even if the terms of such care will be dilemmatic.

Nishida’s book captures that dilemma between oppressive care assemblages and liberatory care collectives, access to care and control by the agencies of care, exploitation of care workers alongside their vital work, the capacity for self-definition and resistance in the context of a decapacitating society—the tension between and agency and constraint—in every situation she describes. I fear that that tension will be perpetual if the neoliberal capitalist system—and the injustices and oppressions that it requires—carries on without a mass challenge from below. The socialist Left is predisposed to regard mutual aid as “not enough” to build such a challenge. But none of us—in our bodyminds, kin of various kinds, communities, organizations, or other collectives—is enough in ourselves. We have the resources, across differences and oppressions and struggles, to make ourselves and our world more than enough. Because our society has abandoned social responsibility, “just care” is an urgent revolutionary project that every justice struggle should enjoin.

Title: Just Care: Messy Entanglements of Disability, Dependency, and Desire
Author: Akemi Nishida
Publisher: Temple University Press
Year: 2022

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About the Reviewer

Dana Cloud is a queer, mad communication studies scholar currently teaching at California State University, Fullerton. Her work, including four books and many articles in communication studies journals, is concerned with the intersections among politics, culture, and movements for social justice. At present, she is working on a two-volume textbook on the rhetoric of U.S. social movements. She is a longtime socialist activist and serves on the editorial board of Tempest magazine.