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New Book Says It鈥檚 Time to Move Beyond Disability Rights and Embrace Disability Justice
Why you can trust us
Disability justice activist, writer, performer, and poet Leah Lakshmi Piepzna-Samarasinha鈥檚 (she/they) new book, (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鈥檚 previous book on disability justice, interdependency, and community, Care Work: Dreaming Disability Justice (which 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鈥攁n idea inspiring a movement that Piepzna-Samarasinha has been involved in since its 2005 inception by a collective of radical disabled people that included 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鈥攁nd particularly white men鈥攄isability justice, from its inception, has been created and led by QTBIPOC, and it aims to center and support them. As Piepzna-Samarasinha says, 鈥淒isability justice [is] a movement-building framework, not an academic theory. And if you say what you鈥檙e doing is DJ and it doesn鈥檛 center disabled Black and brown people, it鈥檚 not disability justice.鈥�
Disability justice is a movement that Piepzna-Samarasinha, citing Sins Invalid鈥檚 , says exists in the 鈥渃liffhangers鈥� 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鈥檚 PTSD, your community鈥檚 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 鈥渘ot something you can join a national organization to join, it鈥檚 something you can do at your kitchen table, starting where you are.鈥�
Piepzna-Samarasinha also points out that disability justice can be subject to some misconceptions, such as that 鈥渋t鈥檚 just the new word for disability rights and [that] it means the same thing, and that it鈥檚 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.鈥�
Referencing a seminal list of principles crafted by Sins Invalid, they add, 鈥淚 don鈥檛 think people read the and grapple with them and really get that we are a movement for the destruction of capitalism and colonialism.鈥� In multiple chapters of The Future Is Disabled, Piepzna-Samarasinha highlights the anti-capitalist and anti-colonialist principles that disability justice foregrounds鈥攁nd, 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鈥攏ot 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, 鈥淐ommunity building isn鈥檛 always seen as 鈥榬eal activism鈥� (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.鈥�
One of the core principles of disability justice is that of cross-disability solidarity and organizing. In The Future Is Disabled鈥檚 first chapter, 鈥溾�榃e Were Maybe Not Going to Save the World, But We Were Going to Save Each Other鈥�: How Disabled Mutual Aid Is Different From Abled Mutual Aid,鈥� Piepzna-Samarasinha writes movingly about disabled mutual aid. Although 鈥渕utual aid鈥� 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 鈥渢he ways we kept each other alive are often completely incomprehensible to abled people and neurotypical people.鈥� 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鈥攐r social-media-ready鈥攖o people outside the community.
Piepzna-Samarasinha elaborates that these intra-community strategies for mutual aid can be generally categorized as 鈥減ublic campaigns and information sharing, crip research, crip resources share, crip checking in and collective care, creating disabled community spaces, and getting people money.鈥�
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鈥攐r 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鈥攐ne 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鈥檚 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 鈥渁utistic long-form, short-form, [and] no-form.鈥�
Disabled joy is a cornerstone of Piepzna-Samarasinha鈥檚 disabled futurity. Their series of 鈥淭iny Disabled Moments鈥� throughout the book introduce readers to what Piepzna-Samarasinha calls 鈥渨riting the little big things down鈥濃�攆rom a moment of problem-solving with another disabled friend while on a hike, to misconceptions of there being 鈥渘o disabled community鈥� in certain places, to discovering a local free library of 鈥渂eautiful adaptive things鈥� 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, 鈥淚 wanted to write these small moments of [a] crip life story. When I see people writing or talking about DJ, care interdependence, etc., it鈥檚 easy for things to turn into a big general lecture, and that doesn鈥檛 help anybody; people just nod, but the complex dance of these moments doesn鈥檛 come through鈥攊t just becomes rhetoric. I wanted to write the moments where it really happens.鈥�
Piepzna-Samarasinha鈥檚 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鈥攁nd creating a disabled future鈥攊s no small feat. But, Piepzna-Samarasinha says, it is possible that 鈥淸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.鈥�
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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/
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