Dreams of Radical Care Work and Disability Justice

This semester, at my internship at a long-term care facility I met a man named Suluk who had been incarcerated for thirty-two years in a wheelchair, and who told me in no uncertain terms that the facility where he now lived was not at all different from prison. This facility is state-run and is a place where residents are supposed to receive care; however, I was told by my supervisor that if one of the residents gets sick, they are sent to another hospital for treatment because this one does not have enough resources. I also overheard multiple conversations between residents complaining about having to haggle for services or care, or how they could not even speak the same language as their care provider. The internship was with a non-profit based out of the hospital that brought arts programming and resources to a group of men of color who had become disabled through gun violence, and almost all of whom have been incarcerated at one time or another. While I have come to the conclusion that this is not a facility where residents receive much, if any, care, it is nonetheless a place where profound care happens.

One of the first things I observed was the group of men that I worked with were evenly split between folks who were paralyzed low enough down that they had use of their hands, and folks who had spinal cord injuries much higher and did not have use of their hands. Though all are disabled, those with better fine motor skills took on the task of helping those without whenever it was needed—opening things, placing things in the backpacks behind their wheelchairs or in their laps, and feeding them snacks. Acts of survival, of asking for what you need, whether that be needing someone to talk to or someone to feed you potato chips, should not be radical or exceptional. We should not be surprised that these folks care for one another because they are men, or of color, or formerly incarcerated. But in a world where sick and disabled and neurodivergent folks are dying because they cannot receive care or are denied access to it, carving out a space for mutual aid within an oppressive institution in a world that is quite frankly trying to kill us, is nothing short of radical activism. For these men who have been shot, incarcerated, disabled, and now incarcerated again under the guise of being cared for, being alive, and keeping one another alive are subversive acts.

The type of care work with which the folks I work with engage, as well as the importance of care work as a practice generally is largely erased in the academy, most notably by feminist discourses, but also within disability rights discourses as well. How often have we heard about “liberating” the woman from the burdens of the home, “leaning in” (an ableist term in itself), and how relegating women to the role of caretaker is demeaning and sexist? While none of these things are explicitly untrue, this second-wave feminist discourse centers the female caretaker as the subject to be liberated, rendering what I call the “caretaken,” those traditionally seen as in need of care, as objects of women’s oppression. This is not to diminish the fact that caretaking work largely occurs along lines of class, race, and gender. As Leah Lakshmi Piepzna-Samarasinha writes, “Care is feminized and invisibilized labor. Care is something that many (not all) poor/working-class folks do like breathing.”¹ However, mainstream feminist discourse also renders the caretaken invisible, pitting multiple marginalized groups against one another and forcing them to fight for scraps of freedom.

Disability rights movements and disability theory spaces within the academy, in their frenzy for civil rights legislation and integration of disabled folks into society, strive ardently to move away from the trope of disabled people as dependent objects. Tom Shakespeare, in his seminal disability studies article “The Social Model of Disability” argues for integration (i.e. assimilation) of disabled folks into society by postulating that it is not our bodies that disable us, but society itself. He writes, “Like gender, disability is a culturally and historically specific phenomenon, not a universal and unchanging essence.”² While this narrative seeks to decenter the body in an attempt to demedicalize disability, its claims erase the experience that disabled, sick, and neurodivergent folks have in their bodies and minds, creates a false construct in which disabled folks are the only people in need of access, and undermines creative ways of understanding access.

We are all dependent beings, whether disabled or not, and those dependencies manifest differently for each of us. As Aurora Levins Morales, a member of the Disability Justice movement writes simply and powerfully, “There is no neutral body from which our bodies deviate.”³ We are trained as wage-laborers living under a capitalist regime to believe that surviving and getting ahead means both ignoring your own needs and the needs of those around you, and admitting that you are indeed a fallible being feels deeply shameful and unproductive. As Leah Lakshmi Piepzna-Samarasinha so poignantly asks, “What does it mean to wrestle with these ideas of softness and strength, vulnerability, pride, asking for help, and not—all of which are so deeply raced and classed and gendered?”⁴ How can we imagine something greater? How can we conceive of care in a way that is radical and mutual and equitable for all parties, and shift discourses around care, “from an individual chore, an unfortunate cost of having an unfortunate body, to a collective responsibility that’s maybe even deeply joyful”?⁵

In June 2015, Patty Berne published “Disability Justice—a working draft” on the Sins Invalid blog, a document that not only critiques existing disability rights frameworks but proposes a framework for intersectional disability liberation that is radically different. She writes of traditional disability rights frameworks that, “its leadership has historically centered white experiences . . . and centers people who can achieve rights and access through a legal or rights-based framework.”⁶ Disability rights movements have heretofore been unable or just plain unwilling to engage in a vision of liberation that critiques and ultimately moves beyond the scope of the state, which consequently excludes a majority of disabled, sick, and neurodivergent folks for whom the state is the problem. The man I worked with at my internship, Suluk, was incarcerated for thirty-two years in a wheelchair after being shot and paralyzed by a police officer. Devastatingly but not surprisingly, this is not an aberration of state machinations, but exactly how the system was designed to work. A Disability Justice framework understands that appealing to the state for legitimacy undermines the profound violence perpetrated against folks like Suluk at the hands of the very state from which (white) disabled folks are seeking protection. As, Piepzna-Samarasinha writes, “our focus is less on civil rights legislation as the only solution to ableism and more on a vision of liberation that understands that the state was built on racist, colonialist ableism and will not save us, because it was created to kill us.”⁷

In its critique of white disability rights, Patty Berne and her peers seek to center the issue of colonial dynamics and emphasize decolonial struggles as a crucial facet of disability liberation. She writes, “able-bodied supremacy has been formed in relation to intersecting systems of domination and exploitation. The histories of white supremacy and ableism are inextricably intertwined, both forged in the crucible of colonial conquest and domination.”⁸ Piepzna-Samarasinha expands on this conception of ableism by writing, “disability justice asserts that ableism helps make racism, Christian supremacy, and queer- and transphobia possible, and that all those systems of oppression are locked up tight.”⁹ By understanding ableism as connected broadly to issues of colonialism, racism, and transphobia, among many other things, we can deepen our understanding of multiple systems of oppression and move towards liberation from a place of intersectional solidarity.

The Disability Justice framework does not only critique but offers ways of seeing bodies that transcend the binary of abled and disabled and ways of defining access that go far beyond the mere logistics of physical space. Patty Berne writes, “A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met.”¹⁰ By positing that all bodies have unique needs, Berne establishes a need for accessibility that is individualized, and as something that all people need, not just those with “non-normative” bodyminds. Indeed, in the ninth principle of Disability Justice, “collective access” Berne writes, “we value exploring and creating new ways of doing things that go beyond able-bodied/minded normativity . . . we can ask our needs be met without compromising our integrity, we can balance autonomy while being in community.”¹¹ The principle of collective access opens up the possibility of an entirely different way of being in community with others and getting what you need without the degradation and potential for abuse that comes with being made into an object of care. It dissolves the binaries between abled and disabled, caretaker and caretaken and gestures towards a community where wholeness is recognized simultaneously as need is acknowledged. As Aurora Levins Morales writes, “surely we can decide to mark ourselves, through an entirely different set of human acts, with messages of solace and solidarity, with a codex of healing.”¹²

Before we outline what this kind of care might look like, how we might envision caring communities, we must stop and acknowledge the work of those marginalized folks who have been forced into caretaking, a type of work that oppresses others and themselves in the same labored breath. We must acknowledge that the divide-and-conquer principle that is so clearly at work here, and the principle of dehumanization that runs rampant throughout medical industrial complex “care” spaces are both colonizer tactics that we have all been forced to internalize. We cannot hope to decolonize the world around us if we do not first decolonize our own ways of thinking, without questioning the narratives about ourselves and others that have become as familiar to us as breathing. Piepzna-Samarasinha writes, “This is about some of the ways we are attempting to dream ways to access care deeply, in a way where we are in control, joyful, building community, loved, giving, and receiving, in a way that doesn’t burn anyone out or abuse anyone or underpay anyone in the process.”¹³

As a disabled, sick, and neurodivergent woman myself, I must sit with the contradiction that I have experienced care as something that has left my mind and body deeply scarred, as something that is profoundly oppressive, and the fact that my whiteness gives me a privilege that many do not have. Moving towards liberation, towards imagining something greater, means recognizing and struggling with privilege and oppression that exist in the same body. It means recognizing that this work is for many more people than just you. It means sitting back and listening when folks discuss oppression that you have never faced, and very well may have been unknowingly complicit in creating. Piepzna-Samarasinha acknowledges these nuances and complications of solidarity and liberation when she writes, “I believe the only way we will do this is by being fucking real, by not papering over the places where our rhetoric falls flat, where we ran out of steam, or where this shit is genuinely fucking hard.”¹⁴ Before we discuss a future we have heretofore only dared dream of, we have to first acknowledge that this shit is genuinely fucking hard, that a vision of liberation that includes everyone is rife with conflicting needs. It may take us along time to get there, but if we must be slow let us be a “wild pack of slowness.”¹⁵ Let us move deliberately, “centering sustainability, slowness, and building for the long haul.”¹⁶

In outlining the history and current state of care in the United States, Leah Lakshmi Piepzna-Samarasinha writes, “In the face of systems that want us dead, sick and disabled people have been finding ways to care for each other for a long time.”¹⁷ That is to say, the type of care that I observed and participated in at my internship was not rare or exceptional, but rooted in a historical reality that institutional care has always been at best inadequate and at worst deeply oppressive. Piepzna-Samarasinha also argues that care institutions, like the long-term care facility that the men with which I work are living, have historically and contemporarily overlapped with other carceral spaces such as prisons and “boarding schools” for indigenous peoples.¹⁸ While these institutions may seem disparate in population and function, they share an imposed colonial benevolence under the guise of being in service to the “common good.” My conversation with Suluk about the relationship he observed between the hospital where he was living and the prison where he spent over three decades of his life was not isolated, but is something that sick, disabled, neurodivergent and other marginalized folks have experienced for hundreds of years.

Sick, disabled, and neurodivergent folks have been taught that our two options for survival are institutionalization or making ourselves and our needs as small as possible so as not to disturb the people around us. We have been taught that, “our care needs are a pain in the ass and a burden–to the economy, the state, our families, the person we have to share the bus stop with.”¹⁹ There is so much guilt and shame that comes with needing help, and often admitting that we need care puts us at risk for institutionalization and/or abuse. Normative care models espoused by the state and the medical industrial complex set up a plethora of false binaries that disabled and marginalized folks are forced to fit into if they want to survive. We must be completely able-bodied all the time or completely and statically disabled. If we can do something one day and not the next, we must be faking. We must look convincingly disabled or pass as abled. We can either be independent and refuse care, or be cared for and lose all of our autonomy. We have all been forced at one time or another, “to run away from accepting care because care meant control—by family members or partners or workers or strangers.”²⁰ The only way to avoid these binaries is by subverting where we can and submitting ourselves to the system where we must, because as dangerous as the medical industrial complex is, many of us need the knowledge and the resources housed within it in order to survive. Piepzna-Samarasinha writes, “Sick, disabled, Mad, Deaf, and neurodivergent people’s care and treatment varied according to our race, class, gender, and location, but for the most part, at best, we were able to evade capture and find ways of caring for ourselves.”²¹

The idea that Leah Lakshmi Piepzna-Samarasinha keeps returning to in her essay “Care Webs: Experiments in Creating Collective Access,” and indeed an idea that runs as an undercurrent through the Disability Justice framework is the idea of mutual aid, which “as opposed to charity, does not connote moral superiority of the giver over the receiver.”²² While mutual aid can most certainly be carried out between abled and disabled folks, Leah Lakshmi defines a specific type of mutual aid which she calls, “crip made access,” or, “access made by and for disabled people only.”²³ This idea is radical not only because it dissolves binaries between caretaker and caretaken, but it re-imagines who is able to give care, and acknowledges the wisdom of disabled folks who are uniquely able to understand what kind of care is needed, because we need care ourselves. As Piepzna-Samarasinha writes, “We’re so used to disabled care being professionalized, to assuming that medical and therapeutic professionals are the only ones qualified to intersect with our terrifying bodies.”²⁴ Able-bodied folks can of course engage in care work with disabled folks, by listening and following the lead of the person they are engaging in care with, but they are arguably the least qualified to give care and able to understand the kind of care sick, disabled, and neurodivergent folks need. It has been drilled into us so thoroughly that we do not possess adequate knowledge of our own bodies because we have not had the proper training or do not possess the proper degrees. When disabled folks begin to unlearn this harmful knowledge, we can make space for learning that, “disabled people caring for each other can be a place of deep healing.”²⁵

Leah Lakshmi asks us in her essay, “If collective access is revolutionary love without charity, how do we learn to love each other?”²⁶ Revolutionary love is sitting with the reality that saying these things may be easy, but doing them in a way that is equitable and does not leave anyone behind is infinitely harder. It is not shying away from the ways in which this work is hard, and terrifying, and dangerous, or from how it will be called crazy and irrelevant by feminists or disability rights folks or the medical industrial complex. Revolutionary love is recognizing that needing care and wanting autonomy should not be mutually exclusive and striving to create a space where that is possible for not just you but for your community as well. Some might argue that care is not activism, but Piepzna-Samarasinha writes, “Without the life support we [are] giving each other, we wouldn’t be able to stay alive to do activism, or life, at all.”²⁷ For sick, disabled, and neurodivergent folks, staying alive is activism, caring for ourselves and each other with dignity and love is activism, not submitting to the frameworks they try to force us into is activism.

Suluk died two months after our conversation at the age of sixty-six, of something he should not have died of, in a place he should not have been. But this is part of the reality that we shared: that things like this happen to folks like us more often than they do not happen. It is not fair that it took me this long to realize the urgency of this work. It should not have taken my meeting Suluk, and his dying to understand the ways in which our experiences intersected and diverged from one another, and to understand the value of that. It is not fair that I get to write this paper and he does not. But this is part of the imagining: understanding that our theory is flawed and our rhetoric is flawed and that we are flawed, and moving forward anyway with that understanding, not despite it or without it. There is unity in difference. Piepzna-Samarasinha writes that, “we have the opportunity to dream and keep dreaming ways to build emergent, resilient care webs,” and that dreaming cannot happen within the walls of the academy, it must happen in the bodies and minds of people like Suluk, and the others I work with.²⁸ This dreaming must not be theoretical, but actual, we must dream it by doing it, not waiting for that perfect moment when we have all of the answers and the stars align. “I want us to dream mutual aid in our postapocalyptic revolutionary societies where everyone gets access to many kinds of care,” Piepzna Samarasinha writes.²⁹ This can only happen if we are aware of when we need to step forward and ask for the care we have been too ashamed or afraid to ask for, and when to step back and offer that same care to someone else.

1. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018), 66.
2. “The Social Model of Disability,” The Disability Studies Reader, 5th edition, edited by Lennard J Davis (New York: Routledge, 2017), 197.
3. Aurora Levins Morales, Kindling: Writings on the Body (Cambridge: Palabrera Press, 2013), 9.
4. Piepzna-Samarasinha, Care Work, 33.
5. Piepzna-Samarasinha, Care Work, 133.
6. Patty Berne, “Disability Justice—a working draft by Patty Berne” Sins Invalid, June 10 2015, http://sinsinvalid.org/blog/disability-justice-a-working-draft-by-patty-berne
7. Piepzna-Samarasinha, Care Work, 23.
8. Berne, “Disability Justice—a working draft by Patty Berne.”
9. Piepzna-Samarasinha, Care Work, 22.
10. Berne, “Disability Justice—a working draft by Patty Berne”
11. Berne, “Disability Justice—a working draft by Patty Berne.”
12. Levins Morales, Kindling, 38.
13. Piepzna-Samarasinha, Care Work, 33.
14. Piepzna-Samarasinha, Care Work, 35.
15. Piepzna-Samarasinha, Care Work, 52.
16. Piepzna-Samarasinha, Care Work, 53.
17. Piepzna-Samarasinha, Care Work, 41.
18. Piepzna-Samarasinha, Care Work, 39.
19. Piepzna-Samarasinha, Care Work, 34.
20. Piepzna-Samarasinha, Care Work, 37.
21. Piepzna-Samarasinha, Care Work, 38.
22. Piepzna-Samarasinha, Care Work, 41.
23. Piepzna-Samarasinha, Care Work, 42.
24. Piepzna-Samarasinha, Care Work, 57.
25. Piepzna-Samarasinha, Care Work, 65.
26. Piepzna-Samarasinha, Care Work, 33.
27. Piepzna-Samarasinha, Care Work, 63.
28. Piepzna-Samarasinha, Care Work, 35.
29. Piepzna-Samarasinha, Care Work, 65.