{"id":60366,"date":"2025-08-07T10:00:49","date_gmt":"2025-08-07T15:00:49","guid":{"rendered":"https:\/\/www.publicbooks.org\/?p=60366"},"modified":"2026-01-16T20:10:11","modified_gmt":"2026-01-17T02:10:11","slug":"will-care-save-us","status":"publish","type":"post","link":"https:\/\/www.publicbooks.org\/will-care-save-us\/","title":{"rendered":"Will \u201cCare\u201d Save Us?"},"content":{"rendered":"

Care was everywhere\u2014and nowhere. In the aftermath of the state\u2019s failure to respond to COVID-19, the concept of \u201ccare\u201d has soared to new heights, at least within the academic disciplines of disability justice and disability studies. Meanwhile, outside the academy, the pandemic was characterized by mass death, including here in New York City, the early epicenter of the pandemic in the US. The rationing of scarce resources like ventilators represented stark failures of state preparedness. It revealed the devastating free fall caused by a vacuum of care. Consequently, anyone writing about bodies, care, disability, and medicine over the last four years seemed compelled to answer the question: \u201cWhat about COVID? For that matter, what about long COVID?\u201d<\/p>\n

While the CDC has acknowledged its existence for four decades, myalgic encephalomyelitis \/ chronic fatigue syndrome (ME\/CFS) reached new prominence in the aftermath of COVID-19. The virus is causing syndromic postviral illness at massive scale, with many cases of long COVID diagnosed as ME\/CFS. Because its cardinal symptom is malaise (fatigue, dizziness, brain fog) after any <\/em>form of exertion, ME\/CFS impacts sociality at a fundamental and pervasive level. Sometimes referred to as the \u201csolitary confinement disease\u201d by the patient community, ME\/CFS renders one-quarter of people living with it bed- or housebound, but their profound debility has been underacknowledged by the state, medicine, and bureaucratic systems of support.<\/p>\n

I am an ethnographer of ME\/CFS, and have studied patient groups advocating for increased ME\/CFS awareness and care since 2016, four years before the pandemic. My interlocutors were some of the few people for whom the pandemic changed little about their everyday lives. After all, what is \u201cshelter in place\u201d or \u201cstay at home\u201d for someone already homebound? As restrictions were lifted, however, people with ME\/CFS and immunocompromised populations remained vulnerable to COVID; even after able-bodied people \u201cmoved on,\u201d attached to the fantasy of \u201creturning to normal.\u201d<\/p>\n

The lifting of these restrictions, in other words, itself represented another abandonment by the state, as disabled activists have asserted they have been dismissed and disposed of, and people with long COVID are left in debilitating isolation.1<\/a><\/sup> People with ME\/CFS and long COVID alike form solidarities and collectives at the same time that they face the stark limits of what state and collective support look like. It is time to figure out how we can have \u201cmore care\u201d without its coercions and inequities.<\/p>\n

But care can mean a lot of things: It\u2019s an affect (\u201cI care about you\u201d), structure (\u201chealthcare\u201d), and practice (\u201cproviding care\u201d) all at once.2<\/a><\/sup> It can contain love, create resentment, or, as disability rights activists point out, force dependency. In the context of solitary confinement, then, what kind of care is called for?<\/p>\n

This is why COVID\u2019s aftermath is a key context for recent books on \u201ccare.\u201d We all needed care during the COVID-19 pandemic, but dominant narratives\u2014that the pandemic is \u201cover,\u201d that there is a normal to which we can return\u2014obscure the unevenness with which care is distributed, especially for those with postviral illness. A historical critique of hegemonic arrangements of care, Premilla Nadasen\u2019s Care: The Highest Stage of Capitalism <\/em>(2023) points the way to a less violent, non-state version of care. Authored by a group calling themselves \u201cThe Care Collective,\u201d The Care Manifesto: The Politics of Interdependence <\/em>(2020) argues we need to place care at the center of life, and lays out what kinds of material conditions we might need to get there. Finally, Akemi Nishida\u2019s Just Care: Messy Entanglements of Disability, Dependency, and Desire<\/em> (2022) is an ethnography of care labor, both in the form of US state programs like Medicaid and in the form of grassroots care collectives.<\/p>\n

All examine care not in terms of rights-based independence models that exalt the autonomous liberal subject, but rather, by aiming to usher us into new modes of caring that are more humane, less capitalistic, and fulfill the needs of marginalized subjects who have been left behind by the state. And whether their aim is to address COVID-19 or not, all note that their books are situated in the pandemic context.<\/p>\n

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Care\u2019s relationship to chronic illness and disability has a longer history. While the pandemic revealed a lack <\/em>of care, the deinstitutionalization movement of the 1960s and \u201970s revealed that violence and coercion, too, have been enacted in the name of \u201ccare.\u201d Medical fixes aim to \u201ccure\u201d disabled people, regardless of what the disabled person wants. Involuntary institutionalization and care homes also demonstrate that care can justify forced dependencies. Disability rights movements in the 1970s thus emphasized the importance of disabled people\u2019s independence. The move toward independent living\u2014highlighting that disabled people need not be controlled under the guise of care\u2014informed the beginnings of the field of disability studies, summed up in the \u201csocial model.\u201d3<\/a><\/sup> It is social conditions, rather than something wrong with the disabled person themselves, that create disability. The disabled person does not need to be \u201cfixed\u201d but to be free from societal constraints. The implication is that disabled people, with enough rights, can achieve full equality without the violence of confinement or social control.<\/p>\n

More recently, disabled writers have rightly criticized the emphasis on independence, which exalts the liberal, autonomous subject as the pinnacle of disability rights. The independence model also invisibilizes care labor in favor of a rights-based model, without a critique of capitalism: Even as disabled people are not worth any less than able-bodied people, they frequently need (underpaid) caregivers to meet basic needs. To address these pitfalls, disabled activists and scholars have put forward a model of \u201cinterdependency\u201d that emphasizes the reality that disabled people can and do need care from others\u2014and holds that this is not such a bad thing. This care can come in the form of paid or unpaid caregivers, or from other disabled people. Interdependency reconciles the need for a new ethics of care, the recognition of unpaid labor, and a critique of the autonomous individual. The question remains, however, how this interdependency is distributed, where it might take us in the ongoing ramifications of the COVID-19 pandemic, and importantly, who <\/em>can achieve it.<\/p>\n\n

\n\n
Related readings<\/div>\n\n
\n\n
\n
\n \"\"<\/a> <\/figure>\n <\/div>\n\n
\n\n
\n Reprints<\/a>\n <\/div>\n\n
\n Building a Society that Values Care<\/a>\n <\/h5>\n\n
\n \n \"Kathryn <\/a>\n \n Kathryn Cai <\/a>\n <\/div>\n \n <\/div>\n <\/div>\n <\/div>\n\n \n

In Care: The Highest Stage of Capitalism,<\/em> Premilla Nadasen wastes no time disabusing us of romantic notions of care. Refreshingly, Nadasen does not narrowly focus on a feminist critique of reproductive labor (i.e., that the burden of care is disproportionately placed on women, or that \u201chousehold labor\u201d is treated the same as other forms of work). Rather, Nadasen actually breaks down this assumed division between household labor versus \u201creal\u201d labor. The monetization of care, in other words, is crucial to our current economy.<\/p>\n

Indeed, the book\u2019s title is a nod to Lenin\u2019s Imperialism, the Highest Stage of Capitalism. <\/em>Nadasen chose this reference to highlight how embedded capitalism has become, if it captures even our most basic needs. While Nadasen makes this argument about our contemporary economy, she also points out we cannot have a critique of care without examining legacies of racial capitalism. \u201cFor many people of color,\u201d Nadasen notes, \u201cthere was little distinction between production and social reproduction,\u201d as racial capitalism extracts value from domestic workers\u2019 bodies. She wonders if the term \u201ccare,\u201d rather than social reproduction, characterizes these forms of labor at all. Nadasen demonstrates in detail how the concept of care can obfuscate more than it reveals. At times, Nadasen suggests we might dispense with the word all together.<\/p>\n

At the end of the text, however, Nadasen seems to embrace the term, albeit with the modifiers \u201cradical\u201d and \u201cgrassroots.\u201d Radical care, she writes, does not rely on the state, but instead \u201cgrows out of dire community need that emerges from the calculated failure of social welfare programs.\u201d This might mean transferring care needs to community spaces and away from the state.<\/p>\n

Nadasen provides several historical and contemporary examples of how these arrangements of care already <\/em>exist, from the Black Panthers\u2019 free meals, to disabled care webs,4<\/a><\/sup> to street medics responding to police violence during the George Floyd protests. Nonetheless, Nadasen acknowledges \u201cthe question of whether communal care can fully meet our needs.\u201d For instance, some people need access to medical technologies and life-saving medications. (People with long COVID may well have this concern on their minds\u2014how can care collectives research and develop treatments they direly need for a complex disease?) The dilemma becomes who is organizing care, and under what conditions.<\/p>\n

While Nadasen presents us with these questions, she ends by acknowledging that there is \u201cno charter,\u201d as of yet, that would lead us to better systems of providing for human needs. She insists, nevertheless, that it is imperative that we imagine these.
\n<\/p>\n

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disabled activists and scholars have put forward a model of \u201cinterdependency\u201d that emphasizes the reality that disabled people can and do need care from others\u2014and holds that this is not such a bad thing.\u00a0<\/span><\/p>\n<\/blockquote>\n<\/figure>\n

<\/p>\n

The<\/em> Care Manifesto<\/em> stands in stark contrast to Nadasen\u2019s arguments about the state and responses to its abdication. Written by \u201cThe Care Collective,\u201d The<\/em> Care Manifesto <\/em>indicts neoliberalization and care economies, driven by profit rather than human needs. But it does not necessarily dismiss the state programs that Nadasen argues we must move away from.<\/p>\n

In fact, Nadasen cites The Care Manifesto<\/em> as an example of what she sees as too narrow a focus on \u201cthe liberal welfare state.\u201d The Care Collective argues that we need to \u201cput care at the very centre of life,\u201d asking, \u201cWhat kind of infrastructures are necessary to create communities that care?\u201d While Nadasen de-emphasizes state supports, the Collective cites policy changes that might better enable people to care for one another: for example, investing in cooperative housing; rent caps; healthcare; and childcare.<\/p>\n

These may seem like a simple revisitation of a Keynesian welfare state of yore. But The<\/em> Care Manifesto <\/em>does analyze how capitalism, at its very core, inherently diminishes caring capacities. Shorter working hours, for example, are \u201ckey to facilitating the conditions that can educate and expand our capacities for caring, encouraging mutual participation in democratic deliberations \u2026 of care. Once care is prioritized in this way, it becomes easier to find ways to recognize and try to meet our shifting dependencies.\u201d Thus, it is not that the welfare state is the ultimate solution; rather, the Collective points out how state policies, in tandem with capitalist economies, restrict how we might abundantly care for one another.<\/p>\n

What The Care Manifesto <\/em>demonstrates is that we need to understand the material conditions by which <\/em>forms of Nadasen\u2019s \u201cradical care\u201d might become more possible. I am more inclined to start with the Manifesto<\/em>\u2019s questions rather than jump to radical care as the solution.<\/p>\n

Under what conditions can people care for one another? How can we scale care to be noncoercive and abundant? Read alongside Nadasen, The Care Manifesto <\/em>helps us through these questions. We may turn to what Jina Kim has recently emphasized, a potential synthesis of Nadasen and the Manifesto<\/em>: \u201cDreaming of infrastructure\u201d yokes prefigurative practice to more scalable forms of care.5<\/a><\/sup><\/p>\n

It is true that not everyone can form radical care collectives if they are housing insecure or hungry. And it might not be so easy if they are too debilitated, like many people with ME\/CFS and\/or long COVID: because the state systematically dismisses their disease, fails to provide research funding, and denies disability insurance\u2014something that now, under the Trump administration, millions will be lacking due to the gutting of Medicaid and slashing of medical research under the NIH. Still, while the state may not be the be-all, end-all, the Collective suggests there are basic necessities\u2014heretofore unrealized\u2014that might help caring communities flourish.<\/p>\n\n

\n\n
Related readings<\/div>\n\n
\n\n
\n
\n \"\"<\/a> <\/figure>\n <\/div>\n\n
\n\n
\n Interviews<\/a>\n <\/div>\n\n
\n Can You Predict What You\u2019ll Need? Talking Time, Space, and Disability with Margaret Price<\/a>\n <\/h5>\n\n
\n \n \"Liz <\/a>\n \n Liz Bowen <\/a>\n <\/div>\n \n <\/div>\n <\/div>\n <\/div>\n\n \n

The division between Nadasen and The Care Manifesto<\/em> boils down to classic divides between socialist, communist, and anarchist ideas over scalability, resource distribution, and technological development. In other words, what do we get from exalting prefigurative care communities, when not everyone can access them? Are autonomous communities a good way to organize needs? Finally, how do we handle more-complex care needs\u2014such as medical technologies and the need to develop drugs and treatments\u2014all the more urgent after COVID-19?<\/p>\n

The pandemic, after all, did not just reveal care\u2019s vacuum. It also demonstrated, in real time, that \u201ccare\u201d in the first place contains contradictions and dilemmas.<\/p>\n

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These problems are not merely theoretical, as Akemi Nishida\u2019s Just Care<\/em> reveals. Through ethnographically grounded research, she describes how disabled people navigate such problems in everyday life. She provides stories of care workers (funded through state programs) as well as community-based care networks comprised mainly of disabled people.<\/p>\n

Augmenting Nadasen and The Care Collective, Nishida\u2019s method allows her to articulate how these tensions\u2014between dependency and interdependence, the state and its failures\u2014play out in the day-to-day lives of disabled people and the ones who care for them, categories that are far from mutually exclusive.6<\/a><\/sup> Like Nadasen, Nishida highlights that caregivers are also debilitated themselves\u2014not always self-identifying as disabled, but through the conditions of capitalism. \u201cThe larger structure of care,\u201d she argues, \u201cshapes these individual experiences relationally\u2014that is, the structure in which care workers are consumed also depletes those situated as care recipients.\u201d<\/p>\n

Nishida provides a robust critique of the Independent Living Movement described in the opening of this piece. Simply looking to the depletion of these care workers shows independence is simply a myth. Austerity shows that the well-being of those that give <\/em>care and those that receive care are bound up in one another.<\/p>\n

After looking at Medicaid recipients, Nishida turns to care webs beyond systems of state support, which consistently (as Nadasen also shows) leave profound gaps in fulfilling care needs. These care collectives are alternatives to the state that, according to Nishida, are radically resistant to capitalism.<\/p>\n

But a question emerges: In the absence of state support, is caring for one another enough? Moreover, following Melinda Cooper\u2019s nuanced and provocative analysis of AIDS care networks, are such collectives resistant to or symptomatic of neoliberalism?7<\/a><\/sup> While Nishida emphasizes the former, she is clear that her project is not <\/em>one intended to justify the slashing of welfare systems, for example\u2014nor does she idealize the care webs she describes. Rather, her interlocutors are \u201centangled in each other\u2019s messy dependency.\u201d Messiness, here, is oppositional to hegemonic systems of care and capital, at the same time that it creates a perpetual challenge.<\/p>\n

\u201cCrip wisdom,\u201d a term both Nishida and Nadasen end on, is an important addition to discussions of care. \u201cCrip wisdom\u201d is a term disabled communities use to express how disabled people already have expertise in caring for themselves and one another. But as Nishida is clear on, having crip wisdom does not equate to giving and receiving perfect care. In fact, if there is one thing that is strikingly wise about Nishida\u2019s interlocutors, it is how they articulate care\u2019s shortcomings: It can fail when they are tired, when they have to work, or even when people simply don\u2019t like them.<\/p>\n

Being in relation to others is exhausting and inconvenient.8<\/a><\/sup> But perhaps crip wisdom is about both the means and<\/em> ends of care: how to care, but, also, how to understand care\u2019s perpetual limits.
\n<\/p>\n

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Under what conditions can people care for one another? How can we scale care to be noncoercive and abundant?<\/span><\/p>\n<\/blockquote>\n<\/figure>\n

<\/p>\n

I return now to reflect on my own interlocutors: What would it take for them to be cared for? Can this question be answered by these texts, taken together, especially in the context of new formulations of (inter)dependence in disability studies?<\/p>\n

People with ME\/CFS may be free from confining nursing homes, but so many are confined to their own homes. Many of my interlocutors lived in suburban isolation, with husbands that did not believe them but that they had to stay with in order to have health insurance. Or else they lived alone, receiving meager payouts through Social Security,barely scraping by; they grew increasingly estranged from friends and had limited means to even leave their houses (many cannot drive due to cognitive impairment and visual disruptions). No one I interviewed lived in what Nadasen might describe as \u201cradical care\u201d; what the Collective describes as \u201ccaring communities\u201d; or what Nishida describes as \u201ccare collectives.\u201d Indeed, participating in those very organizations of social life would wear them out, making them sicker.<\/p>\n

The reality, as Nishida points out, is that \u201cmany people are often stretched thin.\u201d But certain chronic illnesses like ME\/CFS\u2014defined by postexertional symptoms and <\/em>dismissal\u2014only further challenge utopic visions of smooth, egalitarian interdependency. Just as independence is a myth, so too is the notion that I can always help you as much as you can help me.<\/p>\n

Just as disability studies unpacks independence, we also need to unpack care. Two prerequisites for \u201ccare\u201d emerge here. First, whether it be through Medicaid or care webs, care takes a certain type of person\u2014someone able-bodied enough to do it, or a likeable, socially connected disabled person with the energy to care. Second, it takes certain resources\u2014having time, having a job, having housing, as the Manifesto <\/em>points out. Against the romance of community,9<\/a><\/sup> we need to look at the material conditions that enable care in the first place.<\/p>\n

Do we need better, more radical, or collective care? Yes. But if we were to take dependence, isolation, and impairment seriously, I am skeptical that \u201cvaluing care\u201d can pull all of the analytic weight and political promise we project onto it, even as COVID-19 showed we desperately need it. Care can mean, as in Nadasen, the ways that capitalist economies absorb reproductive labor. It can mean, as in The Care Collective, ways to support the fundamental fact of dependency. Or it can mean, as for Nishida, an ethos that values disabled lives. An unproblematized notion of care\u2014that we can just make it more radical, better, or simply have \u201cmore\u201d of it\u2014risks beginning as a critique of the abdication of the state, but ultimately ends up justifying that very abdication.<\/p>\n

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This abdication, along with a capitalist economy that values energy at its very core, puts many chronically ill people, especially those with ME\/CFS, in a double bind: left behind and systematically denied what it would take to abundantly support themselves and therefore others. As Nishida shows us, the reality is that care is a thoroughly incomplete and uneven project. In contrast to viewing care as a means to an end, let us think about what makes care possible in the first place.<\/p>\n

My ethnographic research took place nearly a decade before the recent, thorough gutting of healthcare under the second Trump administration\u2019s \u201cBig, Beautiful Bill.\u201d Its effects cannot be overstated: Millions will die from it. The critique of state systems of support and new imaginaries of care has been one of the main strengths of disability studies and disability movements.<\/p>\n

But if you are too sick, you do not have the energy to care for others. If you are kidnapped by ICE and stripped from your community, you cannot care for your family. If you are poor and burdened by new work requirements for welfare, you don\u2019t have time to care. In the context of state abandonment, we have to unpack \u201ccare\u2019s\u201d complexities\u2014and discursive and material limits. Care doesn\u2019t have to be this way.<\/p>\n

  1. Emily Mendenhall, \u201cWhat Tony Fauci Says about Long COVID and Other Postviral Illnesses<\/a>,\u201d Scientific American, <\/em>November 10, 2023. \u21a9<\/a><\/li>
  2. Mar\u00eda Puig de la Bellacasa, \u201cMatters of Care in Technoscience: Assembling Neglected Things,\u201d Social Studies of Science<\/em>, vol. 41, no. 1 (2011), pp. 85\u2013106. \u21a9<\/a><\/li>
  3. Tom Shakespeare, \u201cThe Social Model of Disability,\u201d in The Disability Studies Reader, <\/em>edited by Lennard J. Davis (Routledge, 2010), pp. 266\u2013273. \u21a9<\/a><\/li>
  4. This term is borrowed from Leah Lakshmi Piepzna-Samarasinha\u2019s Care Work: Dreaming Disability Justice <\/em>(Arsenal Pulp, 2018). \u21a9<\/a><\/li>
  5. Jina Kim, Care at the End of the World: Dreaming of Infrastructure in Crip-of-Color Writing <\/em>(Duke University Press, 2025). \u21a9<\/a><\/li>
  6. See also K. Eliza Williamson, C\u00edntia Engel, and Helena Fietz, \u201cThe Chronicity of Home-Making: Women Caregivers in Dis\/Abling Spaces,\u201d\u00a0Space and Culture<\/em>,\u00a0vol. 26, no. 3 (2023), pp. 468\u2013482. \u21a9<\/a><\/li>
  7. Melinda Cooper, Family Values: Between Neoliberalism and the New Social Conservatism<\/em> (Princeton University Press, 2019). \u21a9<\/a><\/li>
  8. Lauren Berlant, On the Inconvenience of Other People <\/em>(Duke University Press, 2022). \u21a9<\/a><\/li>
  9. Miranda Joseph,\u00a0Against the Romance of Community<\/em> (University of Minnesota Press, 2002). \u21a9<\/a><\/li><\/ol><\/div>","protected":false},"excerpt":{"rendered":"

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