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In this collection of essays, Lambda Literary Award–winning writer and longtime activist and performance artist Leah Lakshmi Piepzna-Samarasinha explores the politics and realities of disability justice, a movement that centers the lives and leadership of sick and disabled queer, trans, Black, and brown people, with knowledge and gifts for all.
Care Work is a mapping of access as radical love, a celebration of the work that sick and disabled queer/people of color are doing to find each other and to build power and community, and a tool kit for everyone who wants to build radically resilient, sustainable communities of liberation where no one is left behind. Powerful and passionate, Care Work is a crucial and necessary call to arms.
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Leah Lakshmi Piepzna-Samarasinha is the Lambda Literary Award-winning author of the non-fiction books Dirty River: A Queer Femme of Color Dreaming Her Way Home and Consensual Genocide, and the poetry books Bodymap and Love Cake, and is the co-editor of The Revolution Starts at Home. A lead artist with disability justice performance collective Sins Invalid and co-founder of queer and trans people of color performance troupe Mangos With Chili, she performs and teaches across North America.Excerpt. © Reprinted by permission. All rights reserved.:
Preface: Writing (with) a movement from bed
When I moved to Oakland in 2007, I started writing from bed. I wrote in old sleep pants, lying on a heating pad, from the hours I spent in my big sick-and-disabled femme of color bed cave. I wasn't alone in this. I did so alongside many other sick and disabled writers making culture. Writing from bed is a time-honored crip way of being an activist and cultural worker, not often acknowledged by the mainstream but whose lineage stretches from Frida Kahlo painting in bed to Grace Lee Boggs writing in her wheelchair at age ninety-eight.
And disability justice was giving birth to itself as a movement; I got to be part of it, from bed, and so did the pieces I wrote. I wrote pieces that were tools we used to help create the first Creating Collective Access network, an experiment in access crip made by and for QTPOC disabled people. As my experience working with the disability justice performance collective Sins Invalid and its exquisitely high level of access for disabled artists refused to stay in one little corner of my life, it allowed me for the first time to write about my life as a disabled QTPOC artist without closeting the disabled parts. Finding and building with other disabled QTPOC creators prompted me to write pieces about what it meant to create performing arts spaces where access was a central part of the performance, not an afterthought. As queers and femmes in my communities continued to kill themselves, I wrote about suicidality, my own and others, as an ever-present reality in queer and trans of color and femme communities. As I was able to finish my first memoir after ten years, I wrote about that too--about what it takes to write femme of color disabled trauma stories , and how writing survivor stories is part of disability justice. I wrote this not out of a desire for fame or cultural capital, but a desire to be useful.
Culture makes culture. Culture can't be made unless there is a space where you think your words will be understood and celebrated. When there are few QTPOC arts spaces, QTPOC tend to think art isn't a viable career option. When there's no space to talk about disability in art -- when people at the poetry slam tell you “How touching” after hearing your crip poem and give you “sad face,” or just look confused--disabled artists of color won't make disabled art. So disability justice gave me a space to understand that me writing from my sickbed wasn't me being weak or uncool or not a real writer; that it was a time-honored crip creative practice. And that understanding gave me space to write from a disabled space, for and about sick and disabled people.
I got sick with fibromyalgia and CFIDS in 1997, and have been a survivor of violence with complex PTSD and neurodivergence all my life. But I didn't write and publish about disability until my third book of poetry, Bodymap, came out in 2015--almost twenty years after I'd first become chronically ill. Prior to having the great good fortune to run into Sins Invalid and other queer people of color talking about and writing about disability, I automatically thought of disability as something that you weren't allowed to talk or write about in QTPOC culture. Nowhere in the QTPOC, politicized spoken-word communities I was part of (or aspired to be cool enough to be part of) in the 2000s do I remember people writing poetry about disability or thinking about disability or access at all. (Do you remember any poems about disability justice making it to Def Poetry Jam?) And that state of affairs continued into my adult life in able-bodied QTPOC artist communities.
But in the past, disability justice culture has bloomed through the hard work of disabled people who are also queer feminists of color. It's not that there isn't ableist disregard for crip lives, both in the mainstream and inside our movements and communities, doesn't still exist. But I no longer worry that every single person I encounter will all be awkward or pity me or just not get it. I no longer feel like one of a tiny handful of people talking about access, or that no one will come to the crip show, or that all the disabled people are white. When I first started offering sick and disabled writing workshops for queer and trans people of color around 2010, sometimes no one would come out, or just a few people, or the idea would be shot down because the organizers were sure no one would come. But fast forward just five years or so, and when I went on tour with Bodymap in 2015 and read explicitly disability-focused work, almost all of my gigs were standing and sitting room only. When I did a writing workshop by and for sick and disabled people of color at the 2015 Queer Students of Color conference, the room was full of people who wanted to talk and write about everything from pesticide exposures they had received doing farm work to intergenerational trauma. There are articles weekly about disability and ableism on Everyday Feminism, Autostraddle, The Body is Not an Apology and other popular feminist and queer blogs. Everywhere, it seems, people are talking about care work, emotional labor, femme emotional labor, access and crip skills and science.
None of this happened because the able-bodied people decided to be nice to the cripples. It happened because of disabled organizing by disabled queer and trans people of color- often, with femme disabled POC in the lead. And so much of that has been through writing and storytelling and art as activism.
This is how disability justice and disability justice art and activism change the world, and save lives. In writing this book, I wanted to capture some of this history as it is being made and dreamed.
Concrete tools, liberation politics, poetry: This is disability justice.
I'd like to offer a quick definition and history of what, it is, we mean when we say the words “disability justice.” This is important for so many reasons, but especially because what always happens is that Black and brown femmes invent something -- a word or a movement -- and five years later, not only are those spaces who excluded this using the thing we created, they are erasing who created it and slapping it on the shit that fucked us over in the first place. This has happened with disability justice, as I'll explain more about in a second, and I both want to give the Black and brown people and femmes who invented the term credit, and be clear about what DJ means and what it doesn't.
In the words of Sins Invalid co-founder and executive director, Patty Berne:
“While a concrete and radical move forward toward justice for disabled people, the Disability Rights Movement simultaneously invisibilized the lives of peoples who lived at intersecting junctures of oppression – disabled people of color, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others. In response to this, in 2005, disabled activists of color, originally queer women of color incubated in progressive and radical movements that did not systematically address ableism – namely, myself and Mia Mingus, soon to be joined by Leroy Moore, Stacey Milbern, Eli Clare and Sebastian Margaret – began discussing a “second wave” of disability rights and ultimately launched a framework we called Disability Justice.
"...Disability Justice activists, organizers, and cultural workers understand that able-bodied supremacy has been formed in relation to other systems of domination and exploitation. The histories of white supremacy and ableism are inextricably entwined, both forged in the crucible of colonial conquest and capitalist domination. One cannot look at the history of US slavery, the stealing of indigenous lands, and US imperialism without seeing the way that white supremacy leverages ableism to create a subjugated “other” that is deemed less worthy/abled/smart/ capable... We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism and capitalism. Each system benefits from extracting profits and status from the subjugated “other.” 500+ years of violence against black and brown communities includes 500+ years of bodies and minds deemed “dangerous” by being non-normative.
A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them... Disability Justice holds a vision born out of collective struggle, drawing upon the legacies of cultural and spiritual resistance within a thousand underground paths, igniting small persistent fires of rebellion in everyday life. Disabled people of the global majority -- black and brown people -- share common ground confronting and subverting colonial powers in our struggle for life and justice. There has always been resistance to all forms of oppression, as we know through our bones that there have simultaneously been disabled people visioning a world where we flourish, that values and celebrates us in all our myriad beauty.”
When we do disability justice work, it becomes impossible to look at disability and not examine how colonialism created it. It becomes a priority to look at Indigenous ways of perceiving and understanding disability, for example. It becomes a space where we see that disability is all up in Black and brown/ queer and trans communities- from Henrietta Lacks to Harriet Tubman, from the Black Panther Party's resolution to support disabled organizers occupying the department of vocational rehab for two months to force the passage of Section 504 to the chronic illness and disability stories of second wave queer feminists of color--Sylvia Rivera, June Jordan, Gloria Anzaldua, Audre Lorde, Marsha P. Johnson and Barbara Cameron--whose lives are marked by bodily difference, trauma surviving brilliance and chronic illness most of whom never used the word disabled to refer to themselves.. While many of us may rely on state funding and services to survive and it may be strategic to fight for things like the ACA and the ADA to remain protected, our focus is less legislative and more on a vision of liberation that understands that the state was built on racist, colonialist ableism and the state will not save us, because it was created to kill us. a movement that asserted that we were powerful because, not despite, our disabilities. We moved together, with no body left behind.
To me, one quality of disability justice culture is also that it simultaneously beautiful and practical. Poetry and dance are as important as a blog post about accessible bathroom hacks- because they are interdependent. This book is an example of that both/ and. In this mosaic, you will find pieces of personal testimony and poetry, meditations on Gloria Anzaldua and Prince as disabled queer people of color, grassroots intellectual examinations of accessible performance spaces as prefigurative politics -- and also lists of how to tour as a chronically ill artist and notes on where to get accessible, fragrance-free POC hair products.
That is not usual, and that is on purpose. Like disability justice itself as a framework and culture, this book is a mix of very concrete tools and personal essays. I hesitated a bit on considering including the former. Serious cultural work isn't supposed to include lists of fragrance free curly hair products or instructions about how to tour while sick and hurt less, right? But: fuck that. The making of disability justice lives in the realm of thinking and talking and knowledge making, in art and sky. Bu it also lives in how to rent an accessible porta-potty for an accessible-except-the-bathroom event space, how to mix coconut oil and aloe together for a fragrance-free hair lotion that works for curly and kinky BIPOC hair, how to learn to care for each other when everyone is sick, tired, crazy and brilliant. And neither is possible without the other.
Care work in the Apocalypse
When I began work on this book in July of 2016 -- right after I quit the job within a giant corporate university that I had hoped would be an accessible way of making a living, but ended up giving me pneumonia for three months -- I thought I'd just slap together a collection of all the pieces of writing I'd down over the past decade. But this book showed me what it wanted to be. The theme of care work, as a place where disability justice and queer femme emotional labor and cultural work came together, came to me. And in this political moment, where the state makes no bones about not being there to save us, and where the things that do save us --airport demonstrations against Trump's Islamophobic and racist ban, care webs where we raise money for medical and housing surpluses -- are so clearly not the state, the work of this book feels right on time.
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