Leah Lakshmi Piepzna-Samarasinha's Care Work: Dreaming Disability Justice is an essential text for anyone engaged in disability community, activism, arts, and scholarship. Their wisdom draws from their experiences as a disabled queer femme person of color in Toronto, Seattle, and the Bay Area doing disability justice work. I therefore must name upfront that I have been a part of the problem. As a white, cishet, multiply disabled autistic woman, I have had great privilege within disabled and ableist spaces. I have been able to hide my disabilities and only became politically disabled once I could hide them no more. 1 Even then, I have seen whiteness dominate my disability organizations, whether online or on college campuses where I learn and work. In a sense, this means that Piepzna-Samarasinha's Care Work is not for me. Many of their essays read as love letters to the unseen queer BIPOC femmes whose labor keeps entire communities alive but who struggle themselves to receive adequate support. For the rest of us, these passages are a call to see our community members doing this work or to address the toxic aspects of ourselves and our organizations that exclude multiply marginalized disabled people so that we can be in community with them. It is also a precious opportunity for all of us to learn how to do this critical labor.

Although the disability rights movement has always succeeded because of the labor of LGBTQ+ and BIPOC folks, their contributions have historically been minimized and they were not given leadership over the movement. 2 It is no wonder then, that at the thirtieth anniversary of the passage of the Americans with Disabilities Act, we had to celebrate remotely because a pandemic rages largely unchecked. Many politicians and citizens refused to protect their communities from the spread of COVID-19 because their freedom to not wear a mask outweighed our right to live. One of the greatest sources of hope this summer for a more just future for disabled folks came from the release of the documentary Crip Camp: A Disability Revolution, which describes the 504 Sit-ins, Capitol Crawl, and passage of the ADA through the story of a disabled community formed by teenagers at Camp Jened. Produced by Barack and Michelle Obama's Higher Ground, the documentary introduced millions to the critical role played by Bradley Lomax and the Black Panther Party as well as LGBTQ+ organizations like the Butterfly Brigade. 3 The Crip Camp Impact campaign, led by Andraéa LaVant and Stacey Park Milbern, has channeled the awareness generated by Crip Camp into the education and mobilization of thousands of disabled people and their allies through Crip Camp: The Official Virtual Experience and the Crip Camp Educational Curriculum. 4 Guided by the principles of Disability Justice, a new surge of activism is emerging. Piepzna-Samarasinha directly contributed to the Impact Campaign, and Care Work is uniquely suited to help new activists build sustainable communities of care and resistance.

Paralleling their work with Sins Invalid and their volumes of poetry, Piepzna-Samarasinha's Care Work blends poetry and prose, encouragement and critique, and counsel and precedent to forge a more just world. The volume features some reprints and revisions of existing articles, blog posts, and conversations with other disabled activists, but each piece is made new when positioned in relation to the others. In addition to a preface introducing the reader to Disability Justice, the book concludes with a topical bibliography of suggestions for further reading. This framing reinforces the culture of interdependence fostered by Piepzna-Samarasinha's work and disability justice as a whole; she is never writing alone, but rather thinking and moving with her crip community. The essays are organized into four numbered but unnamed parts, which I understand roughly as building community, suggestions for radical access, surviving (sexual assault, chronic illness, and suicidal ideation), and caring for yourself. Reading them together gradually spins a web, with each essay as an intersection connected to the others with surprising reverberations. Piepzna-Samarasinha's writing models the webs of care they espouse—transfiguring, healing spell work, their "wild disability justice dreams."

One immediately beneficial aspect of Care Work is Piepzna-Samarasinha's practical advice. The essay "Chronically Ill Touring Artist Pro Tips" resonated with me deeply as a former performer, current academic, and chronically ill crip. It is paired with "Prefigurative Politics and Radically Accessible Performance Spaces," which urges the reader to assume the revolution has occurred and presume access is the norm. Design venues and shows to be inclusive of all. Instead of the "curb cut" or accommodations approach where you adjust only once asked, plan for your spaces to have ASL, wheelchair access for audience and performers, childcare, and fragrance-free guidelines. Make the world you want and you will attract the audience you want. But most importantly, as they share earlier in Care Work, abandon the checklist and start with love. 5

When describing "Care Webs," Piepzna-Samarasinha relates five different stories to demonstrate the various shapes networks may assume and to describe pitfalls that may be avoided, followed by a helpful list of questions to ask and keep asking about your own care web/collective. By listing attributes that indicate "Crip Emotional Intelligence," Piepzna-Samarasinha simultaneously provides acceptance of disabled experience and aspirational goals for personal growth, for example: "sharing resources and showing up, and having a spoken or unspoken rule that acknowledges that you both (the two crips in the situation) have stuff going on. You will offer what you can. You will stop when you have to. You will accept "no" to your offer without taking it personally." 6 The most urgent and critical guidance they provide relates to suicide, both from the perspective of the people "who dance with dying" and those who love them. This relates closely to "Protect Your Heart: Femme Leadership and Hyper-Accountability," which addresses the problem in movement work where vulnerability, love, and care work can be abused. Their wisdom lives in my heart and on a sticky note on my computer monitor: "If someone comes shooting, you can give yourself some cover, not hand them your heart. You are a renewable and also limited resource." 7 For those of us in the work, or for those starting to get involved, Care Work is an invaluable trove of wisdom to build sustainable practices.

Lastly, Piepzna-Samarasinha dreams glimpses of a crip future. Care Work concludes with a conversation between her and Stacey Milbern on "Crip Lineages, Crip Futures," which seems all the more poignant now that Milbern has become an ancestor. They discuss Milbern's notion of "crip doulas," those who bring us into the community, teach us to survive, and awaken us to the world of disability. Mentorship becomes a space of disability justice and a way of connecting our ancestors to our future. In one of the most direct descriptions of a potential future, Piepzna-Samarasinha lays out "A Modest Proposal for a Fair Trade Emotional Labor Economy." But we need not wait for their imagined future, as they provide blueprints for building it today. Emotional labor should be consensual, not automatically expected of femmes, and everyone should be free to say no. Those who are sick and disabled themselves possess crucial knowledge about care, and their expertise should be valued. Care webs must be reciprocal; in cross-disability spaces, one person may not be able to offer the exact same form of labor, but that is a feature, not a bug. Used properly, interdependence can flow naturally from a diverse coalition of bodyminds. Care labor ought to be embraced by all genders, with times of rest built into the system. Lastly, gratitude must be built into disabled fair-trade emotional economics: people should be seen and appreciated for the work they do.

The magic of Care Work is that it is a manifestation of care itself; Piepzna-Samarasinha's words are alchemy that can transform our movements from rights to justice, from quick flashes of defiance to sustained resistance amidst a tripartite apocalypse of Covid-19, police violence, and climate crisis. They remind us that we—the disability community—do have the answers, passed down from our ancestors and elders and nurtured by our siblings: "Our crip bodies are gifts, brilliant, fierce, skilled, valuable. Assets that teach us things that are relevant and vital to ourselves, our communities, our movements, the whole goddamn planet." 8

Endnotes

  1. Mia Mingus: "I often talk about the difference between descriptively disabled and politically disabled. And descriptively disabled people are just anybody who is disabled, but they may not understand themselves in a political way. And being politically disabled is really about folks who have an analysis about ableism, who feel a solidarity with other disabled people who understand their disabled experience as having political meaning and value and weight." Mia Mingus and Alice Wong, "Disability Visibility Project: Mia Mingus, Part 1," Disability Visibility Project, September 25, 2014, https://disabilityvisibilityproject.com/2014/09/25/disability-visibility-project-mia-mingus-alice-wong/.
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  2. Jennifer L Erkulwater, "How the Nation's Largest Minority Became White: Race Politics and the Disability Rights Movement, 1970–1980," Journal of Policy History 30, no. 3 (2018): 367–99. https://doi.org/10.1017/S0898030618000143
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  3. Susan Schweik, "Lomax's Matrix: Disability, Solidarity, and the Black Power of 504," Disability Studies Quarterly 31, no. 1 (2011). https://doi.org/10.18061/dsq.v31i1.1371; see also an example of more recent attention paid to Lomax's pivotal role: Eileen AJ Connelly, "Overlooked No More: Brad Lomax, a Bridge Between Civil Rights Movements," New York Times, July 8, 2020.
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  4. For more on these projects, see http://cripcamp.com.
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  5. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver, BC: Arsenal Pulp Press, 2018), 74–78.
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  6. Piepzna-Samarasinha, 71–72.
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  7. Piepzna-Samarasinha, 224.
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  8. Piepzna-Samarasinha, 75.
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