The Future Is Disabled: Prophecies, Love Notes and Mourning Songs

by Leah Lakshmi Piepzna-Samarasinha

Leah Lakshmi Piepzna-Samarasinha follows up their incredible book Care Work with The Future Is Disabled. Piepzna-Samarasinha writes about the last two years of surviving COVID-19 as a disabled femme of color in an ableist world that isn’t interested in protecting disabled folks. They also discuss mutual aid and disabled joy in the face of isolation and discrimination.

The pandemic has been incredibly difficult for disabled people who have been asked to “take one for the team” by wider society. Piepzna-Samarasinha writes encouragement to disabled folks, relishing in our community’s creativity in our fight for survival. They also mourn those lost in the pandemic and the care crisis so many of us still face.

Genres: Disability, Nonfiction, Queer, Social Justice, Essays, Disability Studies, LGBT

316 pages, Kindle Edition

First published October 4, 2022

About the author

Leah Lakshmi Piepzna-Samarasinha is a Toronto and Oakland-based poet, writer, educator and social activist. Her writing and performance art focuses on documenting the stories of queer and trans people of color, abuse survivors, mixed-race people and diasporic South Asians and Sri Lankans.

Reviews

[Danika at The Lesbrary · Rating 5 out of 5]

Leah Lakshmi Piepzna-Samarasinha is the author of two of my favourite books: Bodymap, a collection of poetry; and Care Work, a collection of essays about disability justice. So it's no surprise that I loved their new essay collection about disability justice during the pandemic and in the future.

This book is written for a queer, BIPOC, neurodivergent, disabled audience, which is also the focus of disability justice. Not only does Piepzna-Samarasinha discuss their experiences as a queer femme disabled person of colour, but in this collection, she also writes about recently realizing they're autistic and how that interweaves through those experiences.

I took so many notes while reading this that I could keep spouting off bullet points of what I think is powerful and essential from The Future is Disabled, but it would be a very long review and would not be as good as just reading it. I always get so much out of Piepzna-Samarasinha's books, and I'm looking forward to rereading it to get even more.

I can't recommend this book highly enough. Every book I've read about disability justice has expanded my mind and made me see new possibilities for the world and the way I live in it, and I know I've only scraped the surface of the wisdom and collective knowledge of this movement.

Full review at the Lesbrary.

[Corvus · Rating 3 out of 5]

DNF. I generally like LLPS's work, in spite of her giving dangerous medical advice in Care Work. There's some great stuff about disabled community and interdependence. There is some great stuff about disabled writers and finding ways to make events and workshops accessible as well as the struggles faced along the way.

There is far too much misinformation about autism and other neuro-divergence and some other disabilities. She is self diagnosed, and like many people who are, has a lot to say about what autism is. At first she said she was wary of speaking about autism, then spends good chunks of the book describing normal things that almost everyone does as being autistic. Saying "yeah!" While people are talking and you agree. Being quieter when you're stressed or talking more when you're excited. Wanting to hang out and watch a movie without talking. Meandering while telling a story and talking a lot. Like.... This is the problem with this stuff, the more self diagnosed people take up the most space with the loudest voices, the more people think that autism is something completely different or describing things that overlap with countless other personality traits and disorders.

What if we made a world where we realized all of us have needs and disabilities and we can meet everyone's needs regardless of if they have a specific diagnosis?

[Nathan Shuherk · Rating 4 out of 5]

A little less theory based than Care Work, and some very important and practical guides and advice in navigating the disability world in a time that seems to be making it harder and harder to exist. The “future” as a focus in this book was a very interesting lens but left me wanting more attention, especially surrounding climate change (it is certainly addressed often, but could’ve been even more prominent). For those that loved Care Work, I’d be confident you’ll love this as well.

[Sarah Cavar · Rating 4 out of 5]

An insightful account of the origins of and ongoing discourse around disability justice, as a movement rapidly entering mainstream discourse despite/because of COVID. The meta narrative of disability justice is underlined by the intensely personal account of its originator, Stacey Park Milburn’s, untimely death, and its impact on Piepzna-Samarasinha. There are some excellent insights into crip craft/writing and the beginnings of a rich DJ intertext of care practices highly relevant in an ongoing pandemic.

That said, the best parts of this book were weakened by its unwillingness to enter deeper theoretical conversations. That isn’t to say I expect this book to be a “theory text,” far from it, but I noticed the brief chapters ending prematurely rather than expounding on (for example) crip linguistics, disabled knowledge/practices in relation to mainstream publishing, and the shifting meanings of “access” and “collective living” and even “love” when enacted in increasingly precarious contexts. We’d get so, so close to a generative and underdiscussed topic, and then we’d move on, leaving some chapters thin and unfinished. I wish this book’s topics had been narrowed and deepened, especially in its engagement with other contemporary disabled writing (and that some kind of reference list / bibliography had been included!!!)

[conway · Rating 5 out of 5]

Not to be dramatic but Leah Lakshimi Piepzna-Samarasinha’s work has changed the way I see myself and the world around me !!!!

[Ashton · Rating 5 out of 5]

beautiful, wonderful, incredibly meaningful and impactful. maybe(?) easier to read than Care Work for anyone looking to get into disability justice, but still contains in-depth, nuanced, and crucial conversations. there’s so much i love about this book. the way leah references and cites other DJ writers and thinkers really reinforces how broad and interconnected DJ work is, plus it leaves the reader with a lot of jumping-off points to dive deeper. some standout chapters to me include: chapter 1: we were maybe not going to save the world, but we were going to save each other - how disabled mutual aid is different than a led mutual aid, chapter 9: i wanna be with you everywhere (and i am) - disability justice art as freedom portal, chapter 11: autistic long-form, short-form, no-form, exchotextia: autistic poetic forms, and the entirety of part three (the disabled future.) there are so many points i highlighted in this book and will undoubtedly be coming back to. highly recommend.

[laurel [the suspected bibliophile] · Rating 5 out of 5]

Absolutely incredible.

I highly, highly recommend this one for EVERYONE to read.

[Stacy · Rating 3 out of 5]

I'm disabled but don't experience chronic pain and don't identify as queer, BIPOC, or neurodiverse, so I don't think I'm the target audience for this. Having said that, it was exciting to read about the communities the author is part of for mutual aid, art/expression, etc. I'm typically the only disabled person in my circles, so I haven't had that type of experience. The author is a talented, passionate, thoughtful writer, and judging by the rave reviews here, many people are finding this book validating and valuable. It's definitely worth reading if you have any interest in disability justice (which everyone should).

[Philip · Rating 2 out of 5]

Being a Queer, Disabled, BIPOC person, the idea that the skills learned by Queer, Disabled, BIPOC people are essential for our culture in this historic moment is seductive. The reality of the book, however, didn't live up to the seductive idea and I often found it to be mere autobiography (as opposed to autobiography with a point) and somewhat offputting. I could see that it might benefit others, though, and would not discourage anyone reading it if they so desire.

[Tara · Rating 5 out of 5]

This was a balm to read, it broke me and put me back together many times, I experienced every emotion and I know I'll return to it often. I listened to the audiobook read by the author, sometimes with the physical book and other times on a walk with my dog. It's sad and joyful and heartbreaking and comforting, I really needed it, it made me feel a lot less alone. I highly recommend it to any disabled folks, especially if you're feeling hopeless and abandoned by society and loved ones as they decide they're over caring about covid. I recommend it to abled folks who want to learn about what disabled folks have experienced, disability justice, how to make events and gatherings more accessible, anyone who needs a reminder on why centered disabled folks in justice work is so crucial, and just anyone doing or interested in social justice.

[Kj · Rating 4 out of 5]

A book every human being should read.

It's mic drop after mic drop, plus reflections on art-making and the erotic, plus practical and pragmatic advice on everything from rejecting grind culture to drafting accessibility riders for speaker events, all written with an eloquent mix of no-fucks-given and there's-space-for-everyone.

A total knock-out of disabled insight, anger, and voracious vitality.

[akacya ❦]

2024 reads: 210/250

leah lakshmi piepzna-samarasinha follows up care work with this exploration of living during covid-19 as a disabled femme of color in an ableist world. they discuss mutual aid and disabled joy in the face of isolation and discrimination. i loved this book. i’d highly recommend this to anyone interested in disability justice!

[Tamara-Jo Schaapherder · Rating 5 out of 5]

INCREDIBLE! I’m thinking a lot about utopia!

[Laurel · Rating 5 out of 5]

This is a fantastic deep dive into disability justice, masterfully written by a disabled futurist. It has given me lots to think about and unpack. I really recommend it!

[l.w. · Rating 4 out of 5]

(audiobook)
fascinating, mostly.

despairing and hopeful simultaneously, about the future and the now.

a lot of this book talks about disabled mutual aid. i think it had a lot of good to say, especially in the aspect of "disabled people can help too." our society hates disabled people and views us as Lesser, Always. we cannot contribute to anything, we must be doted on, we are only the takers and never the givers. this book proposed that's bullshit, and that we are powerful and generous too. we can help too.

i did find, however, that sometimes what the author was advocating for was just Friends. they propose the idea of good, mutually disabled friendship, and they present it as something radical. even as something exclusive—only disabled people know how to help each other out. i don't really believe this. i do believe in community, my disabled friends are fucking awesome and the community we've built is enviable, but i don't believe that friendship is unique. important, absolutely. rare, yes. but not exclusive. abled people have deep and powerful friendships too. disabled and non-disabled people can have interabled relationships that are magical.

and i understand my argument here, it's a "not all men." but i feel like i, personally, could not differentiate betweet Friendship and the type of mutual aid that this book talks about.

that is NOT to diminsh its important. this concept, regardless of what name you give it, is what living is about. it's the most important thing ever—and it's enjoyable, and it's love, and it's survival.

i dunno.

i enjoyed this book a lot. it's the first book specifically on disability justice that i've read, and it's wonderful. the futures that are imagined... are ones that i still fear to believe in.

i don't think it should be accepted at face value. i think it raises a very important view, and i think it needs to be engaged with critically. im not sure i'd recommend it as the first book on disability justice that someone reads, it is quite radical, but that does not diminsh its value. i enjoyed it. i love the possibility that i deserve to thrive. and it is still a nonfiction book on a current movement, which should be engaged with critically, regardless of the movement or the opinion.

[jellyfishiii]

wow this book really changed me as a person, i embarrassingly had no idea how big disability justice was before reading this and now i feel so amazed and in awe and inspired and also angry at how awful the fucking government was when covid started and how they’ve completely forgotten abt it like obviously i knew but also wow. like it is lowkey foucault’s conception of bio power and who the government lets live and who they kill. bc it is murder! i really appreciated the author’s perspective on covid as a whole esp as a mass disabling event.

the whole concept of access intimacy was lowkey a revelation to me but it’s really beautiful and put words to something i’ve definitely felt. it was so amazing to see examples of it like wow!! this is something that can exist! the author talks abt how disabled femme poc people often can’t have needs as a reality of survival and how that damages their relationship with asking for needs/asserting them. also made me think more about communication and different types of disability.

it was so cool to read about disabled organizing and how it differs from other types of organizing/protest and how important home is to that (and even before that just having access to a home with privacy). it really broadened my perspective and made me think about the importance/necessity of community and how mutual aid plays a part in that in new ways. overall amazing read, def a book i need to buy and highlight lol

also amy the author is sri lankan haha u should read!!

[Casey · Rating 5 out of 5]

This book was medicine for my heart! So urgent, always! So filled with disabled joy and grief! I just can’t recommend this book enough!

::

Compared with Care Work, this book felt like it was moving with even MORE cross-disability wisdom! There were practical notes, stories, theory! It felt like a second volume of Care Work while simultaneously being its own thing! More range, breadth, expansion, learnings! Yes! Yes! Yes!

I want to be with you everywhere! 💝

[kim child of the god of thunder · Rating 5 out of 5]

Since I read this, I’ve read at least three books that made reference to it! Such a good read. Disability justice needs to be in everyone’s radar, and yet it was refreshing to read a book where disabled, neurodivergent, and ill folks are the intended audience.

[Jacqueline Parry]

fighting the urge to quote this book in my grad apps

[Richard Propes · Rating 4 out of 5]

If I were to sum up Leah Lakshmi Piepzna-Samarasinha's "The Future Is Disabled" in one word, that word would likely be "grief."

Increasingly recognized as one of the most respected voices in the disability justice movement, LLPS's activism has nearly always gone far beyond. LLPS is a Canadian-American poet, writer, educator and social activist. Their writing and performance art focuses on documenting the stories of queer and trans people of color, abuse survivors, mixed-race people and diasporic South Asians and Sri Lankans.

With "The Future Is Disabled," LLPS remains as bold and occasionally controversial as ever. Their bold and uncompromising voice imagines a world where disabled people survive and thrive, yet there's a poignant lens here centered in grief over the 2020 death of Stacy Park Milbern and the undeniable impact Stacy's death has had on LLPS's personal, professional, and justice-centered life.

"The Future Is Disabled" is literally filled with prophecies, love notes, and mourning songs. As an activist, LLPS has always been someone to both agree and disagree with. Heck, that's part of activism. I've seldom, if ever, met someone with whom I was in 100% agreement. However, LLPS is so richly grounded within disabled joy that it's impossible to not align with them, love them, and respect them.

As a disabled creative myself, "The Future Is Disabled" was a brief detour away from reading for review and into reading for my own emotional and physical salvation. While at times I admittedly found myself cringing a bit (I'll confess that some of the writing on neurodivergence I have difficulty reconciling), I repeatedly found freedom in LLPS's vision, passion, love, and rage.

"The Future Is Disabled" is part memoir, part eulogy, part social rage, and always visionary in its 100% conviction that everybody and every body matters.

[Ems · Rating 4 out of 5]

Leah Lakshmi Piepnza-Samarasinha beautifully describes how disabled folks (with emphasis on BIPOC + queer folks) have been taking care of each other/ helping each other survive forever, but especially through the covid pandemic. I liked the centering of disabled joy and pleasure. The writings on Stacey Park Milbern were heart wrenching and powerful and led me to look into some of Stacey's work as well.
This one wasn't as groundbreaking for me as Care Work was, it got a bit repetitive in some parts, but still an important read for anyone interested in disability justice and disabled futures I would say.

[Jade · Rating 5 out of 5]

Lakshmi Piepzna-Samarasinha centres the pleasures and imaginations of crip, QTBIPOC communities. The Future is disabled offers socio-emotional skills to grow capacity for emotional labour. Tiny disabled moment # 6 warmed my cold, cold heart. Lakshmi Piepzna-Samarasinha reminds the audience that creating beauty is a life affirming practice.

[Sonia · Rating 5 out of 5]

Affirming and insightful and authentic in the best sense of that complicated word: messy, sometimes a bit meandering, grieving COVID as a "disabling event" and all of us who knew that isolation before the pandemic and will know it after. But ultimately hopeful, somehow, anyway.

[Bethany Schaufler-Biback · Rating 5 out of 5]

i love leah lakshmi piepzna-samarasinha

[Hilary · Rating 5 out of 5]

[Thank you Arsenal Pulp for a gifted copy]

Leah begins: “I believe in the disabled future.” I remember dreams of something like this, where disabled bodyminds are celebrated and respected and, to use language that Leah themself chooses, allowed to come home.

This book. It’s a mourning (because how many disabled people have we lost to the pandemic and medical violence and lack of access to the care they need?); it’s a catalog (because the contributions of disabled people are so often ignored, even as abled people learned crip ways that have always existed as a way of survival); it’s an act of love (because how else to describe how Leah always manages to write words that make me go yes, yes, yes). Leah herself also titles it as prophecies, because even under the weight of grief, this is first and foremost about crip dreaming, about creation, about fashioning better worlds where all bodyminds are made to feel safe, welcome, and dignified—and keep dreaming, Leah tells us, please keep dreaming—they dare us, guide us lovingly, to imagine our answer to the question: “What future would you create if you leaned into the wild crip imaginings you maybe have not let yourself imagine?”

If you are disabled, read this to be held in your grief, pain, and dreaming. If you are not disabled, this book is here to hold you too, and to remind you to be humbled by the glorious ways that crip bodyminds traverse this earth, and that the ferocity of our beings is something that cannot be ignored.

Arsenal Pulp—please keep publishing disabled voices! We love you for it.

[Care · Rating 5 out of 5]

Holy shit, this is OUTSTANDING. Every essay gave me a new perspective, new impression, new things to ponder and grow from. Can't recommend enough, I loved this even more than the author's previous Care Work which I also loved. I can't wait to revisit this and glean even more wisdom from it.

content warnings:
Graphic: Confinement, Death, Emotional abuse, Mental illness, Pandemic/Epidemic, Chronic illness, Grief, Medical content, Ableism, and Racism

Moderate: Child abuse, Fatphobia, Hate crime, Police brutality, Panic attacks/disorders, Religious bigotry, Terminal illness, Cancer, Genocide, Homophobia, Murder, and Forced institutionalization

Minor: Death of parent, Excrement, Self harm, Abortion, Suicide, and Transphobia

[Harmony Williams · Rating 5 out of 5]

This is one of those foundational, life-changing books for me. I've had PTSD for 15+ years, chronic pain for 5 years, identified as disabled for 4 (ever since I started using a wheelchair), but like many disabled and chronically ill people I've been isolated. It often feels like I'm stumbling in the dark and this book is a light to me. It reminds me that I am not alone. It orients me as to the current issues and the possibilities and the freedom disabled life can be. It gives me a base from which I can build and launch myself not as a lone person, but as a part of a community.

[amaldae · Rating 3 out of 5]

3.5/5

In part deeply validating in its grief and fury and love, in part annoying in its desire to claim everything as distinctly BIPOC Autistic/Neurodivergent/Disabled experience (I love the term echotextia though). I'm glad this exists but it wasn't as revolutionary as I'd hoped - I don't feel I got much from this to actually move forward with. I haven't read all of Care Work yet but hope it'll be something I could recommend more broadly to my disabled kin.

[Lindsay · Rating 3 out of 5]

This book was a heavy read. It was not what I expected and contained much more autobiographical elements, but it was a really good entry point into the world of disability justice. And it opened up my eyes to a lack of a disabled community in my life.

[sarah ♡ · Rating 3 out of 5]

This was uniquely perfect for me as the author wrote about their experience living in the Bay Area and Toronto, my two homes. There was some good information in these essays but I found things getting a little repetitive and I was losing interest as it went on.