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by Leah Lakshmi Piepzna-Samarasinha (Author) Format: Kindle Edition
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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.
This publication meets the EPUB Accessibility requirements and it also meets the Web Content Accessibility Guidelines (WCAG-AA). It is screen-reader friendly and is accessible to persons with disabilities. A Simple book with few images, which is defined with accessible structural markup. This book contains various accessibility features such as alternative text for images, table of contents, page-list, landmark, reading order and semantic structure.
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Review
Care Work: Dreaming Disability Justice is a collection profoundly necessary at this moment ... the essays share a fundamental hypothesis: to achieve social justice, ableism must be destroyed. Personal narratives and accounts of organizing are voiced from Black and brown and queer disabled people, radically reimagining the ways our society is structured, uplifting visions and models for care webs that create collective access. &emdash;Broadly (Best Books of the Year)
An instant classic, Care Work is equal parts on-the-ground dispatch from the disability justice movement and practical field guide to liberatory access. Rather than something to be begrudgingly tacked on, accessibility, Leah Lakshmi Piepzna-Samarasinha shows us, might be joyous and collective. &emdash;Smithsonian Magazine
Page after page, Leah Lakshmi Piepzna-Samarasinha documents the necessity, power, and sheer brilliance of disability justice. Be prepared for her words, stories, and political thinking to shake up what you know about care and access, revolutionary dreaming, and present-day resilience. &emdash;Eli Clare, author of Brilliant Imperfection: Grappling with Cure and Exile
As a Black disabled activist, cultural worker, and collector of art, books and music by people of color with disabilities for more than twenty years, I'm excited and thirsty for Leah Lakshmi Piepzna-Samarasinha's Care Work. As one of the original thinkers of Disability Justice, I'm overjoyed that artists and activists like Leah are writing books like this one that helps water the roots of Disability Justice. This book is coming from the bed, the streets and on stages that Leah has spoke, taught, performed and struggled on -- that's why it's so accessible and brings lived knowledge into our outdated, stiff institutions and activist movements. In this era of hyper capitalism, toxic hypermasculinity, and White supremacy, we desperately need Care Work. &emash;Leroy F Moore Jr., co-founder of Sins Invalid, co-founder of National Black Disability Coalition
Leah knows that the world we deserve is a world shaped by the honest, messy, skillful genius of disabled queer femmes of color. Reading this book allows you to live inside the gorgeous, uncomfortable, emergent, compassionate world that disabled femmes of color have been making all along. Leah cares for us all with this work, but not in the apologetic, default, mommy mode you may be trained to expect. This care is the survivor-sourced, survivor-accountable, saltysweet truthtelling we need to (guess what?) SURVIVE. &emash;Alexis Pauline Gumbs, author of M Archive and Spill, co-editor of Revolutionary Mothering
Leah writes brilliantly about sick/disabled/mad/neurodivergent genius, collective care work, and all-too-familiar patterns of abuse and trauma that happen even/especially in radical spaces/marginalized people's communities. Care Work is a necessary intervention for those in queer/trans people-of-color spaces and white disability spaces alike, but more importantly, it's an offering of love to all of us living at multiple margins, between spaces of recognition and erasure, who desperately need what Leah has to say. This book is an invitation to dream and to build and to love, as slowly and imperfectly and unevenly as we need to. &emash;Lydia X.Z. Brown, author of All the Weight of Our Dreams: On Living Racialized Autism
--This text refers to the paperback edition.
About the Author
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. --This text refers to the paperback edition.
Product details
ASIN : B07D5J6RWX
Publisher : Arsenal Pulp Press (30 October 2018)
Language : English
File size : 2787 KB
Text-to-Speech : Enabled
Screen Reader : Supported
Enhanced typesetting : Enabled
X-Ray : Enabled
Word Wise : Enabled
Sticky notes : On Kindle Scribe
Print length : 261 pages
Best Sellers Rank: 406,221 in Kindle Store (See Top 100 in Kindle Store)
26 in Healthcare Politics
51 in Lesbian Studies (Kindle Store)
59 in Disability Studies
Customer Reviews: 4.7 out of 5 stars 312 ratings
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Leah Lakshmi Piepzna-Samarasinha
Leah Lakshmi Piepzna-Samarasinha is a queer disabled femme writer and performer of Burgher/Tamil Sri Lankan and Irish/Roma ascent. The author of the acclaimed memoir Dirty River, the Lambda Award-winning poetry book Love Cake and Consensual Genocide, and co-editor of The Revolution Starts At Home: Confronting Intimate Violence in Activist Communities, her writing has also been widely anthologized She is the co-founder of Mangos With Chili, North America's touring queer and trans people of colour cabaret, and is a lead artist with the disability justice incubator Sins Invalid.
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Care Work: Dreaming Disability Justice
Leah Lakshmi Piepzna-Samarasinha
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From other countries
sierra choquette
5.0 out of 5 stars Great Anti-Racism Tool
Reviewed in Canada 🇨🇦 on 19 April 2022
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If you want a deep dive into the depths of how abelism and racism manifest in our North America, I'd highly recommend this book. Lots of Canadian content, which is refreshing, and the essays are written in an easy to follow way. Great Book I will be reading more from this author as soon as I can.
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Mary Ann Thomas
5.0 out of 5 stars One of the most important books I've read lately
Reviewed in the United States 🇺🇸 on 14 November 2020
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Care Work is hands down one of the most important books I've read lately. It's a history of the disability justice movement which talks about practical models for care that don't rely on violent state or family structures. Piepzna-Samarasinha writes on healing justice and theorizes anti-ableist survivor healing. Each essay had so much gold and I plan on buying half a dozen copies to gift to those who need it. Personally, I found a language here about emotional labor that goes beyond gender binaries, that acknowledges they way femmes of color are the ones who are both willing to, and expected to, take care of everyone without adequate pay or acknowledgment.
5 people found this helpful
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Symone
5.0 out of 5 stars The book I didn't know I needed.
Reviewed in the United States 🇺🇸 on 29 August 2019
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I am an anthropology PhD student doing research on alternative approaches to healing practice and community building. I have been utilizing a healing justice framework primarily to ground my work and was only superficially knowledgeable about disability justice work and the particular kind of care work that Leah lays out in this text. This book has catapulted my work in many ways (providing nuanced definitions of access, care, ability, etc.) and was most successful at communicating why we must all have a vested interest in matters of disability justice as we work towards our collective liberation. I could go on, but I highly recommend this book to any and everyone, even (and perhaps especially) those who work outside of the social justice realm. It's about time we all take disability justice seriously and more intentionally center these issues in our everyday discussions about justice and liberation.
10 people found this helpful
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Ellie
5.0 out of 5 stars essential reading for crips & those who love us
Reviewed in the United Kingdom 🇬🇧 on 17 February 2021
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if you are a disabled person wanting to love yourself and your community better, or an abled person wanting to love the disabled people in your life better: read this and dare to dream of a better future for crips (and everyone else)
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Lucy Merriman
5.0 out of 5 stars Amazing
Reviewed in the United States 🇺🇸 on 16 June 2020
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Cathartic, practical healing book. As a sick / disabled person, I want to use Piepzna-Samarasinha's framework for looking at disability, our need for care, and our unique skills and powers, and draw together the disabled + queer community here in Ohio. We are so segregated! So isolated from each other. It can be so much better and more beautiful. "Care Work" is part-dream, part-map, part challenge.
4 people found this helpful
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A. Chen
5.0 out of 5 stars Excellent
Reviewed in Canada 🇨🇦 on 31 October 2020
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I love this book.
The seller has sent it in pristine condition. I was able to trust the seller.
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Emilio
5.0 out of 5 stars I really needed to read this
Reviewed in the United States 🇺🇸 on 21 February 2019
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This is fantastic work that really articulates a lot of things I've struggled to find out how to say myself. It's very validating for people who are disabled or exist in a less-than-abled space, where you're not where health and ability actually leaves you. I think anyone looking for radical social change in any sector should pick this up and take a read.
12 people found this helpful
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Nicole youn
2.0 out of 5 stars Not as I thought
Reviewed in the United States 🇺🇸 on 1 May 2022
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This book is nothing like the one we read in group I will be sending it back.
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Amazon Customer
5.0 out of 5 stars Satisfied Customer
Reviewed in the United States 🇺🇸 on 26 June 2019
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We have an Access and Diversity group and safe space at school where there are DVDs and books available for viewing and sharing. This was a great addition to the library. Thank you!
One person found this helpful
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Kate Moran
5.0 out of 5 stars Unbelievably brilliant book
Reviewed in the United States 🇺🇸 on 20 October 2019
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I just keep reading and re-reading it. One of the most amazing disability writers.
2 people found this helpful
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===
4.58
3,158 ratings419 reviews
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.
GenresDisabilityNonfictionEssaysSocial JusticeQueerFeminismLGBT
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304 pages, Paperback
First published October 30, 2018
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Leah Lakshmi Piepzna-Samarasinha27 books789 followers
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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.
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Thomas
1,445 reviews8,469 followers
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January 27, 2020
One of the most mind-expanding and heart-opening books I have ever read. In Care Work, Leah Lakshmi Piepzna-Samarasinha delves deep into the realities and politics of disability justice, a movement that centers sick and disabled queer and trans Black and brown people. She writes about so many important topics, including the importance of accessibility and how we should strive beyond accessibility too, the ways that we should honor and celebrate femme labor and pain as opposed to devaluing it, and questioning the survivor-industrial complex that states that survivors of abuse or trauma have to present a certain way to receive respect and dignity. She writes with openness and intelligence and invites readers into her world, which made Care Work such a compelling read.
I learned a lot about my own ableism and ableist assumptions through this book. Care Work has motivated me to challenge myself and other able-bodied and neurotypical folks on how to dismantle ableist practices and institutions, so that we can expand our compassion and empathy beyond ableist models. The essay about the survivor-industrial complex really resonated with me too. As a survivor of trauma and abuse, I often feel like I have to present myself a certain way – put together, intelligent-sounding, etc. – to minimize my painful life experiences and how they continue to affect me, even if they affect me less than they used to. This book has helped me to see how my individual struggle in that regard is linked to broader systems of ableism and capitalist ideology. Yes, I’m a trauma and abuse survivor and I still have bad moments and days and I’m still iconic and I don’t have anything to be ashamed of.
Overall, would highly recommend this book to everyone. For fellow able-bodied and neurotypical people it’ll most likely challenge you, in a way that you should be challenged and that you’ll grow from. I’ve already put another of Piepzna-Samarasinha’s books on my soon to be read shelf.
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Corvus
565 reviews149 followers
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June 10, 2019
I wanted to put my only negative critique at the beginning of my review for people who skim because it involves one small section of the book that contains dangerous advice. There is a section in which the author shares her tips for touring, many of which are safe and helpful. While she does remark that these things will not work for every body, she does not explain further in ways that are critical for disabled and/or sick people reading.
One thing she recommends is, for chronic pain, to take 800mg of ibuprofen every 4 hours. She doesn't say for how long or when to stop. One day of doing this puts an adult well over the maximum safer prescription dose. I say 'safer" not safe because long term NSAID use can still be dangerous at "safe" levels. Overdosing ibuprofen (and other NSAIDs) can commonly cause deadly and debilitating illnesses such as stomach bleeding and kidney disease. I learned the hard way by developing both likely from too many NSAIDs in my youth because of chronic pain. My stomach has since mostly healed but I have to be regularly monitored by my nephrologist forever. Now, if that's your chosen risk level, that's totally ok for you. But, if you are going to recommend the practice to others, they need to also be informed of the risk.
Another thing she recommends is activated charcoal. It is true that activated charcoal can help with digestive issues and other things. It is also true that they give activated charcoal for overdoses and poisonings because it absorbs drugs and poison. If you are on meds, activated charcoal will absorb your meds, reducing or eliminating their concentration in your system and thus their effectiveness. As a person on 20 medications, I looked into activated charcoal at one point and luckily was reminded of being given it in the hospital in the past. This part is not explained in the recommendation, so if a person on medication- particularly the kind of medication you die without- follows this advice without more research, they could be injured or die.
So, please be careful with and research things before trying them. If you are not able to do the research, perhaps ask someone you trust to do it or your doctors if you have a good relationship with them.
Now that that is out of the way, let me move on to saying what a beautiful and important book Leah Lakshmi Piepzna-Samarasinha's "Care Work: Dreaming Disability Justice" is. I am not a big poetry person. I might say I don't often feel like I "get" poetry. Maybe I lack creativity or education. That said, I knew about Piepzna-Samarasinha from "The Revolution Starts at Home" and her general disability justice work. Every time a poem of hers came across my feed, I found myself enchanted. I promised myself that one day I would read a book of her poetry- a promise I have yet to fulfill. But, when I saw "Care Work" come out, it seemed like an excellent place to start. I went ahead and picked up her memoir "Dirty River: A Queer Femme of Color Dreaming Her Way Home" as well which I hope to read soon.
This book challenged me in ways I expected and those I did not. I don't want to make this review all about me, but I struggle to express the immense affect this book had on me without getting personal. I have had multiple chronic illnesses and disabilities since I was very young, but only recently began identifying with disability when they progressed badly enough that I had to stop working, most activism, and lose most of my social life through losing the ability to do many things I loved. I initially felt sad and lonely reading this book. I felt sad about all of the times I failed to implement or educate myself about disability justice in my activist days. I felt and feel sad that the kind of care networks Piepzna-Samarasinha discusses in this book seem so out of reach. I felt sad that I am not quite there yet as far as feeling worthy and empowered around my health and disability. I really want to be there.
The challenges came in realizing how much internalized ableism I have. They came in realizing how many times I failed to provide proper access and care, how many times I don't realize I failed, and how many times I have felt embarrassed, ashamed, and unworthy of accessing care. It challenged me to think about my masculinity (which I try hard to manifest as a caring and sensitive kind) with how my masculinity and that of others has manifested in failing to provide care and access. I initially tightened up a little with discussions around masculinity as the way I move through the world and especially medical settings has been a struggle (to keep it short, I've been asked to undress far too often in front of people and I was once getting a painful EMG of a nerve in my neck while two doctors stood over me calling me he and she competitively in front of a room full of med students- a common occurrence.) I have also often found myself a caretaker in my partnerships. Piepzna-Samarasinha did nothing to inflame this. In fact, she went out of her way to say she knows about many masculine people providing care and caring. She discussed ways in which feminine abled people have messed up. They were 100% my feelings to work through.
I am grateful for the look into myself and into my life. Real talk, it was my dad who abruptly and carelessly changed the subject without asking if I was ok when I told him I had cancer, it is my male roommate who I have to passively ask 10x over a period of weeks to carry something heavy upstairs for me, it was a male doctor who once told me in the hospital, "You need to suffer," it was a male psychiatrist who yelled at and insulted me as a teenager in an assessment "to see how long it would take me to break," it was multiple male doctors who told my mom I was malingering before I ended up hospitalized for multiple days with a 105+ degree fever followed by a botched spinal tap and missing months of school, it has been masculine people including trans ones and myself who have not been there, it was my single mom who sat with me in hospital beds as a child and youth, it was she and my femme and feminine friends who opened me up to accepting help when I was the sickest in adulthood, it was trans guys who identified as fem/feminine/not masculine who provided support, and so on and so on. The discussions around gender and masculinity in this are real and on point. So, if you're like me, sit with that discomfort and you will learn many things. The discussions of masculinity, femme-phobia, and care work in this are wonderfully nuanced and informative. If your knee jerks, that's on you.
I had no resistance to her discussions of race and whiteness in the book. One of the first things I noticed when I began delving into disability literature was how overwhelmingly white it all was. I am not saying this for ally cookies or whatever so please don't offer. I am trying to say that it was apparent even as a white person how limited the discourse and activism ends up being when you only have a minority of the world population having the most highlighted contributions. It was excellent reading Piepzna-Samarasinha's words and point of view as well as racking up new sources to check out via her impeccably well done citations and resources. I adore what many white disabled people contribute as well (hello, Eli Clare, you changed my life.) They are just one small piece of a very large puzzle.
Another thing that Piepzna-Samarasinha does well is catalogue Queer and/or POC disabled history in really informative ways. She discusses the lack of "elders" in movements who can tell these and other stories. Often the exclusion is due to lack of disability accessibility. All of us who do not die abruptly will become disabled eventually. She discusses the importance of having movements larger than a rotating door of 20-something middle class abled people. I wish this was something I had educated myself on better when I was younger and more able. Perhaps I would have created different networks and would have more to draw on now.
As you can see, this book made me think about myself and my life a lot. I don't know if approaching this review this way was me taking up too much space. But, I will say that though this book brought up a lot of feelings, it was not all bad. Piepzna-Samarasinha gave me hope that there is more out there. She describes beautifully care networks, friendships, other relationships, event set ups, activism, etc that can include sick and disabled people of all kinds. She describes them as real, possible, and already happening. She describes things I have longed for and things I never even thought of.
This book brings something huge to the table in terms of disability justice and discourse around disability in general. Reading this book opened up a whole other dimension for me. I can't recommend it enough to both newbies to the struggle and veterans. I think everyone can gain something from this book.
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Danika at The Lesbrary
515 reviews1,271 followers
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March 3, 2019
This is a powerful, brilliant book. I learned so much, and it made me real confront my own ableism and sit with that discomfort. I was blown away by this. My full review is at the Lesbrary.
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Tyler J Gray
Author 2 books216 followers
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August 10, 2020
Nonfiction essays about disability justice, by disabled queer femme's of color. So much packed into this book! As a queer disabled afab person there was so much I related to, I swear it helped heal something inside of me, and as a white person there is so much that I learned from.
If you are abled, or white, or masc, or cishet...honestly, I recommend this book to everyone. Please, read🥰
I read it on Hoopla but I will so need to buy myself a copy so I can re-read and annotate it!
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Sasha
236 reviews18 followers
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January 2, 2021
This totally rocked my world. Exactly what I wanted and so much more! Feels like it would be great whether you are new to or seasoned in healing and disability justice. So much incredible food for thought on community care. Second to last essay - on survivorship and the false broken/healed dichotomy and how applying a disability justice framework blows that wide open - in particular hit hard!
books-i-own my-highest-recommendations
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Maia
Author 27 books2,188 followers
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December 16, 2021
Piepzna-Samarasinha is a queer, disable, femme writer, organizer, activist, educator. They have toured extensively with a disable performance art group, Sins Invalid, and several of the essays focus on ways to take care of oneself while traveling and touring venues that are likely less accessible than their websites claim. As someone who hopes to book tour in the future with a disabled co-author, this gave me a lot of food for thought about committing to booking only wheelchair accessible venues and other ways I might plan my own events to be more open to all, from hiring sign interpreters to having fragrance-free zones. I also really enjoyed the histories and stories of the early Disability Justice movement, the thoughts on chronic illness and creativity, and on care webs and mutual aid for disabled people designed by disabled people. This is a book I will likely buy to refer back to in the future (as I sadly now have to give back the library copy I've been hoarding for 4 months).
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Samantha Shain
149 reviews3 followers
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March 5, 2020
I learned a lot from reading this book and I think many of the ideas, especially the ones that I found provocative or controversial, will stay with me for a long time. Putting words to the overlap between ableism and misogyny was refreshing and cathartic to read. I think the author also did a good job engaging with the critique of call-out/cancel culture; however I think in other parts of the book I felt as though she participated in calling out community institutions that are not able to make disability justice an immediate reality. I wish the book incorporated more of a structural lens (I mean, there was lots of discussion of systems of oppression) but not about erroding public health supports in a way that has made it harder and harder for low income and disabled people to access services that they need and deserve, and communities/families may not be able to provide safely and reliably. This book reinvigorated me to fight for a social safety net as well as prioritizing disability justice in my own communities.
Some parts could have been edited for repetition, and overall I think that too much responsibility was put on individuals and small groups rather than building accountable institutions, but I'm still glad that I spent time with the text and I look forward to how the ideas here will continue to inform and influence me.
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Sarah Cavar
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May 1, 2021
It isn’t too often I find new disability justice texts that so productively challenge, excite, and center me. Care Work, an impeccably written and edited collection, does just that. I’m so glad I finally sit down with this one and just knock it out in one sitting; appropriately, I read this cover to cover in my bed, beneath my trusty weighted blanket.
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Andrea
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September 4, 2020
I am sure this is a very important book for a lot of people. It wasn't written for me. This wasn't really an introduction to disability justice, but more of a platform for an activist to connect with their community and that is really important and powerful.
I made it over 30% of the book and the writing felt informal, meandered into side stories and was redundant. I also thought the structure itself was confusing-- the essays are all by the same writer but aren't clearly differentiated. I felt like I was reading an introduction and waiting for the main subject. And I felt like I was stepping into a group conversation and not able to catch up and participate. That's okay!
For someone new to disability activism and rights and experiences, I'd highly, highly recommend Disability Visibility edited by Alice Wong. In fact, Leah Lakshmi Piepzna-Samarasinha has an essay in that collection and is a good way to experience their voice.
I feel bad for not getting this, but I need to move on!
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yuni
36 reviews13 followers
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September 8, 2019
a book i knew would completely alter my life before i was even close to finishing it
favorite chapters:
-care webs: experiments in creating collective access
-crip emotional intelligence
-cripping the apocalypse: some of my wild disability justice dreams
-a modest proposal for a fair trade emotional labor economy (centered by disabled, femme of color, working class/poor genius)
-suicidal ideation 2.0: queer community leadership and staying alive anyway
-two or three things i know for sure about femmes and suicide: a love letter
-protect your heart: femme leadership and hyper accountability
-not over it, not fixed, and living a life worth living: towards an anti ableist vision of survivorhood
i am relaxing into the miracle of being cared for well
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