Care Work: Dreaming Disability Justice

Disability justice organizers read and assign Care Work: Dreaming Disability Justice to give disabled communities shared language for the mutual aid networks they build when Medicaid waiting lists and hostile agencies leave them without safe care.

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Navigator-side Compensations → Use Humans for Assistance

What it is

Care Work: Dreaming Disability Justice (Arsenal Pulp Press, 2018) collects 19 essays by Leah Lakshmi Piepzna-Samarasinha on disability justice organizing, collective care, and the survival practices QTBIPOC disabled communities build when state care systems fail them.¹ Disability justice organizers read the book to find shared language for the "care web," a rotating human-help network in which five to thirty people divide the labor of personal assistance, resource sharing, and access coordination rather than concentrating it on one attendant or one agency. Scholars assign it in academic courses, advocates cite it in policy arguments, and organizers use it as an on-ramp for communities building collective care outside Medicaid's reach.²

Piepzna-Samarasinha wrote the book from her position as a disabled, queer, Sri Lankan and Irish-Canadian author and commissioned performer with Sins Invalid, the disability justice performance project cofounded by Patty Berne and Leroy F. Moore Jr. in San Francisco in 2005.³ The essays move between memoir, theory, and practical organizing guidance. QTBIPOC disabled communities had practiced collective care before 2018 without shared vocabulary; Care Work gave them a name for it, a political-economic critique of the systems that made it necessary, and a framework that travels across contexts.⁴

Why it matters

The structural conditions that made care webs necessary emerged through a specific sequence of under-resourced state action. After congress passed the Community Mental Health Act in 1963 and authorized 1,500 community mental health centers to replace large psychiatric institutions, fewer than 700 were built. Those that opened received no stable federal funding.⁵ States closed expensive facilities without building the community infrastructure they had promised. For disabled people of color, the institution had always imposed colonial care rather than delivered it: Piepzna-Samarasinha documents that care institutions have "historically and contemporarily overlapped with other carceral spaces such as prisons and 'boarding schools' for indigenous peoples, sharing an imposed colonial benevolence under the guise of being in service to the 'common good.'"⁴ Disabled Black, Indigenous, and immigrant communities organized mutual care outside state systems before deinstitutionalization created a name for the gap, because those systems excluded, policed, or harmed them. The Black Panther Party ran free medical clinics and provided material support through its survival programs in the 1960s and 1970s; BPP member Brad Lomax brought that tradition directly into the disability rights movement when the Panthers supplied food and logistical support to protesters during the 1977 Section 504 sit-in in San Francisco, the longest federal building occupation in US history.⁶ Care webs entered this lineage when disability justice organizers Mia Mingus, Piepzna-Samarasinha, and Stacey Milbern convened Creating Collective Access at the 2010 Allied Media Conference in Detroit, organizing 23 disabled people and nondisabled allies into rotating pods that pooled physical assistance, created scent-free spaces, and established communal meals, an early named care-web experiment that Care Work documented and theorized eight years later.⁷

The formal care system reproduces its exclusions along predictable lines. Personal care agencies concentrate in areas of economic density, leaving rural and low-income urban disabled people unserved. Home health and personal care aides earn an average of $16.82 per hour, a wage that often leaves workers unable to afford housing in the cities where they provide care.⁸ Disabled people who seek Medicaid funding for personal assistance must disclose medical information, demonstrate incapacity, and satisfy documentation requirements that queer, trans, and BIPOC disabled people, particularly those with cognitive disabilities, mental health conditions, or undocumented immigration status, frequently cannot satisfy without support they do not yet have. For QTBIPOC disabled people, the formal care relationship often requires enduring inaccessibility in an intimate register: state-assigned workers who express homophobia, transphobia, or racial condescension provide care inside disabled people's homes. Loree Erickson established her Toronto care collective in 1999 after government funding left attendants underpaid and agency workers routinely imposed homophobic attitudes during care visits.⁹ Care Work describes what the care web makes possible: disabled people recruiting people they trust, distributing care tasks across many people rather than concentrating dependency on one, and holding care relationships within frameworks of reciprocity, the human help arrangement the formal system structurally cannot provide.

The US disability care system concentrates profit at the institutional end and cost at the recipient end. Approximately 72% of the roughly 15,000 US nursing homes operate as for-profit businesses, and roughly 66% belong to corporate chains.¹⁰ Medicaid spent $228.6 billion on long-term services and supports in 2023, yet over 600,000 people sat on home and community-based services waiting lists in 2025, with average waits of 32 months.¹¹ Medicaid eligibility rules require many disabled people to maintain income below the poverty line to preserve their coverage, a structural trap that concentrates poverty in the population with the highest care costs. The 2024 US Census found that 20.3% of disabled Americans lived below the poverty line, compared to 11.1% of the general population, and that working-age disabled adults experienced poverty at more than twice the rate of non-disabled adults.¹² Care Work names this redistribution of the adaptation tax: network members absorb costs in labor and time rather than cash, a cost the formal market neither captures nor covers. Robyn M. Powell's 2024 Michigan Law Review article "Care Reimagined" documents how Medicaid's Electronic Visit Verification mandates, income and asset limits, and institutional bias impose surveillance and coerce unemployment, while care webs organized outside those structures sidestep some of those harms, though Powell argues that requirement-setting reforms recognizing disability-justice-centered care as a legitimate model could reduce the structural coercion Medicaid currently imposes.¹³

Sins Invalid's 10 Principles of Disability Justice, first articulated in 2005 and published formally in 2015, provide the political framework Care Work builds on directly. Principle 8, Interdependence, holds that disabled communities "move away from the myth of independence" and toward "mutual reliance" as the basis for collective survival.¹⁴ Piepzna-Samarasinha developed the care web as a concrete organizational form for this principle, translating it from philosophical commitment into documented practice. Mia Mingus named "access intimacy" in a 2011 essay on her Leaving Evidence blog as "that elusive, hard to describe feeling when someone else gets your access needs," an intimacy that formal care systems structurally cannot produce but care webs build and maintain.¹⁵ Care Work traces the care web lineage to Marsha P. Johnson and Sylvia Rivera's STAR House in early-1970s New York, where trans women of color organized collective housing and material survival outside state systems, and to the Panthers' survival programs, positioning the care web within a longer genealogy of collective care built by communities excluded from formal support. Claire Whiddington-Sadlowski's 2018 review in the Canadian Journal of Disability Studies identified the book's central contribution as documenting collective struggle and community building through the care web form, naming it not as a supplement to state care but as a distinct model of organizing care labor that multiply-marginalized disabled communities had built before the term existed.²

Disabled people of color who lack adequate care accumulate differential biological risk through mechanisms the health disparities literature documents. Iezzoni et al.'s analysis in the American Journal of Public Health found that adults with disabilities report cardiovascular disease at 3 to 4 times the rate of non-disabled adults and skip or delay healthcare because of cost at 2.5 times the rate of non-disabled adults.¹⁶ A 2023 study in Frontiers in Rehabilitation Sciences found that nearly 30% of Black and Hispanic adults with disabilities forewent services because of cost, compared to approximately 16% of white adults without disabilities, and concluded that racism and ableism "create amplified disadvantages for those experiencing both identities simultaneously."¹⁷ The Disability Visibility Project documents that disabled BIPOC face compounded barriers to obtaining the medical documentation that ADA accommodations require, barriers that medical racism and underdiagnosis produce.¹⁸ Care Work documents the partial relief care webs provide: daily access to physical assistance, medication management, and the material infrastructure of survival. The book also names the cost: care webs transfer labor into the time and bodies of network members who are themselves disproportionately disabled, poor, and managing their own care needs. The chronic stress of providing unpaid care while managing one's own disability accumulates in network members' bodies, distributing rather than eliminating the biological cost of inaccessibility.

Before 2018, organizers who convened care webs did so without shared language or a published framework they could teach; Care Work gave them both. Piepzna-Samarasinha named the form, documented its practices, traced its intellectual lineage to STAR House and the Panthers, and situated it within a political-economic critique of the care system it compensates for. Powell's 2024 Michigan Law Review article, which draws on that framework to propose Medicaid reform, demonstrates how the book's naming opened terrain for policy argument, moving the care web from community practice to a recognized challenge to institutional design.¹³ The structural conditions Piepzna-Samarasinha names have not dissolved: Medicaid waiting lists grew 14% between 2024 and 2025, and Congress has not changed the legal architecture Powell critiques.¹¹ The care web absorbs what the state does not provide, but it draws from an unpaid labor pool composed largely of disabled, poor, and structurally vulnerable people, which tethers its sustainability to the conditions of abandonment it compensates for.

Real-world examples

In the news

"Care Work: Dreaming Disability Justice" Draws Real-as-F*ck Maps of Justice and Care (November 2018)
-- Bani Amor, Autostraddle

Amor's review identifies the care web concept as the book's organizing contribution, describing Piepzna-Samarasinha's framework as a move away from state systems toward community-based human help organized around reciprocity rather than charity. The review introduces the "crip doula" concept, in which disabled community members guide each other through systems that non-disabled people navigate with less friction.

In the news

What Disability Justice Activist Stacey Park Milbern Taught Us (May 2020)
-- Devin Katayama, Ericka Cruz Guevarra, and Alan Montecillo, KQED

KQED documented Milbern's practice of interdependence: organizing a crowdfunded move and building personal care relationships through political community rather than state systems. Collaborator Andraéa LaVant described Milbern as "the epitome of interdependence. We help each other in order to live." Milbern cofounded the Disability Justice Culture Club in East Oakland, which distributed COVID-19 prevention kits to homeless encampment residents in March 2020, a care web response to a public health gap that government agencies had not filled.

Care Work documents the Creating Collective Access experiment that Mia Mingus, Piepzna-Samarasinha, and Stacey Milbern organized at the 2010 Allied Media Conference in Detroit, where 23 disabled people and nondisabled allies formed rotating pods that pooled physical assistance, created scent-free spaces, and established communal meals across a four-day conference.⁷ Mingus documented the same experiment on her Leaving Evidence blog that year; the book gave the pod structure a political analysis that organizers could carry into new contexts.

Care Work also documents Loree Erickson's Toronto care collective, established in 1999, which has grown to 25 to 35 active members each contributing roughly one shift per week.⁹ Erickson's collective appears in the book as evidence that the care web form can sustain ongoing daily care, not only conference access.

Elizabeth McLain's 2021 review in Disability Studies Quarterly highlighted the book's documentation of "multiply marginalized disabled people, especially queer BIPOC femmes whose labor sustains communities," characterizing the care web essays as essential for disability scholars and activists organizing collective access.¹⁹

What care sounds like (builder-side interventions)

Care at the requirement-setting and support-channels stages means funding home and community-based services at levels adequate to meet demand and building agencies that serve QTBIPOC disabled people safely:

"We are raising home care worker wages so that disabled people can recruit attendants who will stay."
"We are removing Medicaid's income eligibility caps so that disabled people can earn without losing their care coverage."
"We are training our agency workers in LGBTQ+-affirming care because disabled people deserve attendants they do not have to educate."
"We are funding home and community-based services at the same rate we fund nursing facilities so that disabled people can choose where they live."

What neglect sounds like (builder-side interventions)

Neglect means leaving disabled people to organize their own care infrastructure while the state underfunds community alternatives and subsidizes institutions:

"We don't have the budget to expand HCBS waiver slots this year."
"Personal care agencies aren't required to provide cultural competency training; that's up to individual workers."
"If we raise Medicaid income limits, people will stop working."
"Family members are the natural caregivers for people with disabilities."
"The waitlist is just a reflection of demand exceeding current capacity."

What compensation sounds like (navigator-side compensations)

Compensation describes the labor disabled people undertake to build and maintain care webs when adequate publicly funded care is absent:

"I spend about six hours a week coordinating my care web: checking in with people, adjusting schedules, managing whoever is sick or burned out this week."
"I had to ask a friend to help me shower this morning because my attendant canceled and the agency couldn't send a replacement."
"I've trained four people to do my transfers correctly. If any of them moves or burns out, I start over."
"I try to reciprocate by doing emotional support for other network members, but on bad pain days I can't give much back, and that guilt accumulates."
"The agency kept sending workers who weren't safe for me as a trans person. I eventually stopped using the agency and built my own care rotation through community organizing."

All observations occur within the context of disability justice organizing in the United States and Canada, particularly among queer, trans, and BIPOC disabled communities in San Francisco, Oakland, Toronto, and Detroit.

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What it is​

Why it matters​

Real-world examples​

What care sounds like (builder-side interventions)​

What neglect sounds like (builder-side interventions)​

What compensation sounds like (navigator-side compensations)​

Footnotes​

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