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New Book Says It’s Time to Move Beyond Disability Rights and Embrace Disability Justice
Disability justice activist, writer, performer, and poet Leah Lakshmi Piepzna-Samarasinha’s (she/they) new book, The Future Is Disabled: Prophecies, Love Notes and Mourning Songs (out now from Arsenal Pulp Press), proposes a disability futurism that eschews science fiction and social-media-friendly gadgets or adaptive devices that benefit a small number of disabled people. Instead, she envisions a more pragmatic and everyday approach that embraces interdependency, mutual aid, and community building led by disabled queer, trans, Black, and Indigenous people of color (QTBIPOC), and upholds disabled art and joy as radical acts.
The Future Is Disabled is a radical act of world imagining. Like Piepzna-Samarasinha’s previous book on disability justice, interdependency, and community, Care Work: Dreaming Disability Justice (which I reviewed in 2018), The Future Is Disabled moves much-needed conversations on disability, mutual aid, and community formation into the spotlight while pushing readers to confront their own biases and preconceived ideas about who belongs in the future. This is particularly crucial in the time of the mass disabling event that is the ongoing COVID-19 pandemic, and also climate change, which further disenfranchises and impacts disabled people around the world.
Those who identify as progressive are likely familiar with disability rights as a basic concept. What they might be less familiar with is disability justice—an idea inspiring a movement that Piepzna-Samarasinha has been involved in since its 2005 inception by a collective of radical disabled people that included Sins Invalid founders Patty Berne and Leroy Moore, and writer activists Mia Mingus, the late Stacey Park Milbern, Eli Clare, Sebastian Margaret, and Aurora Levins Morales.
While the disability rights movement has tended to be led by middle-class white people—and particularly white men—disability justice, from its inception, has been created and led by QTBIPOC, and it aims to center and support them. As Piepzna-Samarasinha says, “Disability justice [is] a movement-building framework, not an academic theory. And if you say what you’re doing is DJ and it doesn’t center disabled Black and brown people, it’s not disability justice.”
Disability justice is a movement that Piepzna-Samarasinha, citing Sins Invalid’s Berne, says exists in the “cliffhangers” of the disability rights movement. They ask the following questions:
[What] kinds of disabled work, culture, issues, needs, are not spoken to by a civil rights framework focused on laws and policy/legal changes? What happens when the ways we think of disability and disability issues are Black and brown ways? What if disability is your chronic pain from cleaning houses, my father’s PTSD, your community’s history of being medically experimented on, disabled wounds from colonial invasions, police violence, and living in jail? How does that flip everything?
The answer to these questions, says Piepzna-Samarasinha, is disability justice, which is “not something you can join a national organization to join, it’s something you can do at your kitchen table, starting where you are.”
Piepzna-Samarasinha also points out that disability justice can be subject to some misconceptions, such as that “it’s just the new word for disability rights and [that] it means the same thing, and that it’s not a very different political and cultural framework that centers the lives and leadership of disabled Black, Indigenous, and People of Color and queer and trans disabled people.”
Referencing a seminal list of principles crafted by Sins Invalid, they add, “I don’t think people read the 10 Principles and grapple with them and really get that we are a movement for the destruction of capitalism and colonialism.” In multiple chapters of The Future Is Disabled, Piepzna-Samarasinha highlights the anti-capitalist and anti-colonialist principles that disability justice foregrounds—and, just as crucially, writes about the practical strategies involved in building a movement that forwards ways for disabled people to exist and thrive without reinforcing capitalism or colonialism.
She also addresses the ways in which racial and LGBTQ+ justice intersects with disability justice, and emerges within disability futurism—not only through their own position as a disabled nonbinary femme of color, but by forwarding the leadership of disabled QTBIPOC, particularly in building communities, as the way into a more inclusive future that is distinctive from an increasingly outdated (and white/cisgender/straight) disability rights movement. Piepzna-Samarasinha writes, “Community building isn’t always seen as ‘real activism’ (whatever) but the work we do to create disabled Black and brown community spaces, online forums, hashtags, and artwork is lifesaving because it creates space for disabled BIPOC to come out as disabled.”
One of the core principles of disability justice is that of cross-disability solidarity and organizing. In The Future Is Disabled’s first chapter, “‘We Were Maybe Not Going to Save the World, But We Were Going to Save Each Other’: How Disabled Mutual Aid Is Different From Abled Mutual Aid,” Piepzna-Samarasinha writes movingly about disabled mutual aid. Although “mutual aid” has become something of a buzzword in progressive circles during the past few years in the context of climate-fueled disasters and the COVID-19 pandemic, they note that “the ways we kept each other alive are often completely incomprehensible to abled people and neurotypical people.” This incomprehensibility can stem from such actions appearing private, as everyday mutual aid acts among disabled people are not the ones that appear especially heroic—or social-media-ready—to people outside the community.
Piepzna-Samarasinha elaborates that these intra-community strategies for mutual aid can be generally categorized as “public campaigns and information sharing, crip research, crip resources share, crip checking in and collective care, creating disabled community spaces, and getting people money.”
She further outlines how some larger mutual aid networks tend to stereotype disabled, chronically ill, and older people as those who need help from abled people, rather than as members of a collective who can contribute help—or simply not addressing the needs of disabled people at all. Disabled mutual aid collectives, Piepzna-Samarasinha argues, expressly demonstrate the ways that disabled, older, and chronically ill people can help fellow collective members rather than, as often happens with non-disabled mutual aid organizations, being shunted into the category of people-who-are-helped. Disabled and crip mutual aid collectives are one important facet of a disabled future, because these collectives help their members survive in the real world—one that so often dismisses the experiences and needs of disabled people.
One of the strongest aspects of The Future Is Disabled as a collection is the sheer amount of subjects the essays address, from the value of interdependence, to the author’s complex experiences leading Zoom workshops on care work during the pandemic, to the weight of disabled grief and the 2020 passing of the late disability justice activist Stacey Park Milbern, to creating disability art and performance as spaces of joy, to writing essays and poems using what Piepzna-Samarasinha terms “autistic long-form, short-form, [and] no-form.”
Disabled joy is a cornerstone of Piepzna-Samarasinha’s disabled futurity. Their series of “Tiny Disabled Moments” throughout the book introduce readers to what Piepzna-Samarasinha calls “writing the little big things down”—from a moment of problem-solving with another disabled friend while on a hike, to misconceptions of there being “no disabled community” in certain places, to discovering a local free library of “beautiful adaptive things” that makes accessibility devices available for disabled people to borrow. These short essays powerfully chronicle moments that may seem small, but that ultimately reveal larger connections and starting points for the disabled future.
Piepzna-Samarasinha comments, “I wanted to write these small moments of [a] crip life story. When I see people writing or talking about DJ, care interdependence, etc., it’s easy for things to turn into a big general lecture, and that doesn’t help anybody; people just nod, but the complex dance of these moments doesn’t come through—it just becomes rhetoric. I wanted to write the moments where it really happens.”
Piepzna-Samarasinha’s beautifully written essays in The Future Is Disabled also make clear that disability justice happens in many places: online, in performance spaces, in disabled mutual aid organizations, and among friends and relatives.
At the same time, they are clear that making disability justice happen on a larger scale—and creating a disabled future—is no small feat. But, Piepzna-Samarasinha says, it is possible that “[we] can still make a new world. That the stakes are high right now. That disabled people are going to keep figuring out how to survive and that it would be nice if the rest of the world got with us on that. That our grief is important. That we can be revolutionaries as grievers. That disabled people kept each other alive during COVID and still are. That we have the wisdom the world needs but that we have the wisdom each other needs. That we need everyone to make this shit happen.”
Anna Hamilton is a disabled, nonbinary writer. Their work has appeared in Bitch Magazine, Rooted in Rights, Bustle, Teen Vogue, the Daily Dot, Shondaland, and the Disability Visibility Project, among other places. They can be reached at https://annaham.net/about/