Above all, Leah Lakshmi Piepzna-Samarasinha is a dreamer. That’s the guiding impulse that seems to underscore all of their work as a poet, memoirist, organizer, and performance artist. A fixture in the disability justice (DJ) movement, Piepzna-Samarasinha, whose pronouns are she/they, has published multiple books, including poetry collections like Bodymap and the 2018 essay collection Care Work: Dreaming Disability Justice, exploring topics like the need to build an accessible future, the power of combining joy with rage, and the layered meaning of “care.”
In her new book, The Future is Disabled: Prophesies, Love Notes, and Mourning Songs, out now from Arsenal Pulp Press, Piepzna-Samarasinha leans into the notion of dreaming — not as an ethereal or unreal fantasy, but as an active possibility. They wrote the book during the COVID-19 pandemic, which initially offered a strange sort of hope along with the given fear and grief — hope that paradigms might shift, and that with this “mass disabling event,” accessibility and care might become more central to our society, dislodging long-held eugenicist values. While there have been pockets of this kind of growth, to a large extent the opposite has happened.
Piepzna-Samarasinha writes about the specific grief of losing one of their best friends, Stacey Park Milbern, during the early months of the pandemic, and about the ways in which ableism continues to dominate so much of society. But even as they navigate this grief, their work continues to center the possibility and the joy, to push for it and keep pushing, to rest and keep pushing, to laugh and keep pushing, to cry and rage and dance and keep pushing for it. Because Piepzna-Samarasinha continues to dream of a future that so many disabled people across the vast spectrum of disability are already building — a future of access and flourishing for us all.
Shortly after the release of their book, Leah Lakshmi Piepzna-Samarasinha spoke with Them over email about disabled futurism, the power of imagination, and their relationship with autism.
Your work is centered in disability justice, and in this book you lean into “disabled futurism,” a phrase coined by activist Alice Wong. Can you briefly describe the term and talk about the importance of the future and possibility in disability narratives like this one?
I don’t think there’s one set definition of disabled futurism. However, to me disabled futurism, or disability justice futurism, is all the work we do as disabled people and/or people involved in disability justice — particularly disabled 2QTBIPOC people — to imagine a future where disabled people survive, but more than that, we lead, we shape the world, we create futures infused with disabled knowledge and ways of living and imaginings; we, in Stacey Park Milbern’s words, “entice and demand” the world into changing.
In short, we imagine futures where the world has been cripped, we imagine a future for ourselves and a collective future. These don’t have to be utopic: I can think of many disabled or disabled-adjacent science-fiction writers who imagine futures where we are hacking our way through and surviving really unpleasant, fucked-up realities. Also, this is work we’re doing now, not in some far-off imagined future. We’re living within “apocalyptic” conditions (wildfires, flooding, extreme weather, power cuts, pandemics, state violence), and disability justice people are buying generators, doing mass mask distributions, creating maps showing where people can plug in their wheelchairs and life-saving medical equipment, pooling crip knowledge to continue to survive a pandemic.
I think sometimes when people hear the words “disabled futurism” they might imagine some high-tech, expensive future where we all have 40k prosthetics, but what I mean is the ways we’re building disabled communities and survival networks and tools, in the future and now.
Can you expand on the meaning and importance of imagination and its different manifestations in disabled futurism, for you as a writer and artist?
Shira Hassan once wrote that one way settler colonization gets to us is that it tells us we don’t have the right to imagine. I write a lot about the concept of disability justice dreaming and so do other DJ [disability justice] writers. I think as disabled people we dream a lot of wild shit into existence that the powers that be and ablest reality could never imagine, and we do it out of our places of being written off as “crazy” or “asking for too much” — like, yeah, we are Mad / neurodivergent and yeah, we are asking for everything, including shit the abled world doesn’t even know exists. We do it out of our own particular disabled knowledge: I and many other people figured out how to have whole lives and careers from bed or five minutes of spoons at a time. We have sex with ghosts — and on Discord, Stacey [Park Milbern] wrote about ramping a step by taking her sneakers off and rolling over them. We bring beds to protests. We’re told that we can expect nothing, or barely more than nothing, and we counter that by saying we want more than everything. We pull off such crip abundance from dreaming beyond what the ableist world says is possible.
What does it mean to you as an artist and organizer/activist to witness and experience the mass disabling events of COVID, climate change, racism, and capitalism? Where do you find grief and where do you find joy or possibility in those things, today?
These are two huge questions and I don’t even know how to answer the first, but I’ll take a stab at it: I find grief in the mass slaughter and eugenics hot war going on —the hundreds of thousands of disabled people who died in jail, nursing homes, institutions, and long-term care, most of whom may never be heard about in the media. I find grief in the deaths of my friends and comrades. I find grief and like, a nauseous “what the fuck?” in watching [not just] the state, but also people I know go into complete denial of the fact that the pandemic is still here, throw their masks and COVID community safety strategies in the trash, and also throw disabled and high-risk people in the garbage.
I feel grief and nausea and frozen when I witness how Washington is having 80-degree temperatures and smoke in October. This summer, in the area in the Northeast where I live, the drought was so bad I couldn’t go outside during the day as someone with heat intolerance because of my disabilities and the water got too filled with e. coli to swim in it.
I am heartened by the ways disabled people, particularly disabled BIPOC, have done some of the best and fiercest organizing against all of it. That’s where I find joy and possibility, and as an artist and cultural worker and activist, on a good day, I see a lot of my work as documenting it — both big campaigns and the small moments of reaching for each other, saving each other’s lives with a text or telling a story.
What, for you, is queer about disability justice and disabled futurism? What does the word “queer” mean to you and how does/doesn’t it inform or interact with disabled futurism and vice versa?
DJ was specifically created by a majority of crips who are trans, queer, gender-nonconforming and BIPOC. This differentiates it from a lot of parts of earlier disabled movements where there was a lot more white/male/cis leadership. I don’t think it’s an accident; it’s a central part of our imagining that we are people who don’t fit into hetero- and cis-normative ideas of what bodies are, what minds are, what relationships and families and futures are. When you’re a disabled neurodivergent (ND)/Deaf/sick trans, NB or queer person, you know on so many levels the power and dignity and wisdom of a body that doesn’t fit into the WSSCCAP [white supremacist sexist cissexist capitalist ableist patriarchy] or the medical industrial complex.
Can you describe how your own growing relationship with autism affected the writing process and content of this book, and your pandemic experiences?
The same way a lot of trans, nonbinary and GNC people had space to come into ourselves during the pandemic — because maybe we were in lockdown or working from home and there was more room to experiment with or being in our genders safely — there’s what my friend called The Great Unmasking of 2020-2022, especially of middle aged BIPOC femmes. Lockdown was a lot of things but I really came into being autistic because I didn’t have to get on planes or act normal, I was just in my house. So this is maybe the most unmasked book I’ve written. I’ve gotten a lot of feedback from folks who said, you’ve always been blunt but in this book you seem a lot less afraid, you get to the point a lot faster — and I think that’s why.
I also wrote this book very fast because I felt like it was going to be needed. I was talking to Brian Lam, the editor at Arsenal [Pulp Press] in July of 2021, asking him if there was any way the book could come out in fall 2022 and he was like “Yeah, but can you get it done by March 2021?” And I said, “Yes, if I work really neurodivergently!” I leaned a lot on hyperfocus during Omicron lockdown to write this book. And [as opposed to] other years where I would just lean on hyperfocus to survive being sick and needing to work, and then be in autistic burnout afterwards, I did a really good job unapologetically making time for rest and recovery in between the joys of many long-in-the-zone hyperfocus days.
What is something joyful for you right now?
There’s a trans disabled artist, Han Oliver, who has this print that sums up a lot of what I and other disabled folks are feeling. They write, “disabled & sick folks deserve not only survival but joy.” We’re both really good at making disabled joy happen, and we’re demanding the right to live in the whole world. In my recent TruthOut article, I wrote, “I want to live in the full world, like every disabled person. I want to be able to leave my apartment without fearing death, go to a party, have casual sex. I want to live in the world, not my safe immuno-bubble, for the rest of my life.” That still is what I believe.
This interview has been edited and condensed.
The Future Is Disabled is out now from Arsenal Pulp Press.
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