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Care Work: Dreaming Disability Justice
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.
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.
266 pages, Paperback
First published October 30, 2018
About the author
Leah Lakshmi Piepzna-Samarasinha
27 books976 followersLeah 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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Displaying 1 - 30 of 615 reviews
January 26, 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.
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.
May 23, 2024
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.
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.
March 2, 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.
August 9, 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!
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!
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).
January 1, 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!
February 27, 2022
I feel a lot of different ways about this. Each essay hit me differently and I feel like this wasn't the most gender binary variant inclusive text for being written by someone who is part of the queer community. This is a piece I relate to in a lot of ways but I find really hard to read whenever the gender stuff comes up, because Leah reassigned a gender binary of "femmes" and "masculine people" without room for those of us who are different. At the same time, this disability activist community is all I have, and the care gone into this means a lot.
I have notes I made with it, and a lot of it is admittedly critical. But I don't want my words to actually stop someone from reading something that may remind them there are people out there like them. The stuff on suicide especially hit home for me. And that last essay/conversation. The writing of a eulogy in your own head to figure out how you want to be remembered. That's something I do too.
I will say, to those reading this, it's written in a series of essays that weren't written at the same time. So if you're worried that you'll lose the thread because your attention span isn't there for you, this is an accessible thing for that. I think it's mostly chronological, but over the course of years written.
I have notes I made with it, and a lot of it is admittedly critical. But I don't want my words to actually stop someone from reading something that may remind them there are people out there like them. The stuff on suicide especially hit home for me. And that last essay/conversation. The writing of a eulogy in your own head to figure out how you want to be remembered. That's something I do too.
I will say, to those reading this, it's written in a series of essays that weren't written at the same time. So if you're worried that you'll lose the thread because your attention span isn't there for you, this is an accessible thing for that. I think it's mostly chronological, but over the course of years written.
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.
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.
March 17, 2024
I’m not sure how to review this one. Listening to the audiobook on 2x speed did allow me to lose track of what was going on and what each chapter was about, especially at the beginning. So I probably missed a lot of information. But I just didn’t love the format of this book. I couldn’t tell if it was meant to be a memoir of the author’s life—some chapters were all about her accomplishments or her trauma survival—or an informative book on disability justice. I’m not sure I understand their definition of disability justice still.
Some of this was obviously helpful and relatable as a Black, neurodivergent, queer woman, but even with all of those identities, I’m still not quite sure this book was for me? Little of it was applicable to my life, but I can see how it could be helpful to others.
Also, I am not easily triggered by things in books, but I found myself not ready to listen to some parts, yet they were just thrown in there casually. This one should have definitely had a trigger warning at the beginning of certain chapters for the following: su*c*de, SA, r*ape.
Some of this was obviously helpful and relatable as a Black, neurodivergent, queer woman, but even with all of those identities, I’m still not quite sure this book was for me? Little of it was applicable to my life, but I can see how it could be helpful to others.
Also, I am not easily triggered by things in books, but I found myself not ready to listen to some parts, yet they were just thrown in there casually. This one should have definitely had a trigger warning at the beginning of certain chapters for the following: su*c*de, SA, r*ape.
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
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
April 30, 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.
March 19, 2024
This is a book that came to me exactly when I needed it. If you are involved in organizing/union/activist work in any way, PLEASE read this.
I am someone who is president of their union as well as neurodivergent, and when I crashed and burned for the entirety of this past February (I am now on meds and don’t wanna die, thx prozac 🙏🏻), it was in part due to the burnout of organizing, then bargaining, then taking on the presidency of a brand spanking new union all for 4 years straight. The absolute DREAD I had surrounding anything union-related, even something as simple as just receiving a union related email, when I was in the depths of this depressive episode had me second guessing so many things (though, to be fair, I had dread about…literally everything else in my life too. This feeling was not unique to my union work). Thankfully, after some rest, increased therapy, taking some time back in my parent’s house, and of course good ol’ meds (and I do recognize the privilege associated with all 4 of those things), I am starting to feel pleasure again, and therefore fulfillment again, when I do this union work (as well as in my work-work and in hobbies again). But it was scary there for a while. When you get so burned out that depression comes and steals away the things that used to mean so much to you??? Terrifying.
I listened to this book this time around, but I’m actually going to be buying a physical copy of this book to annotate because certain parts of this book spoke so vividly to me. I may update this review after I do that as well, who knowwwssss. In the meantime, here are a couple quotes that stuck out to me enough for me to repeatedly rewind the audio to transcribe them:
“Build capacity. Share the tools some place everyone can access them. Switch out roles. Plan for people giving care to have our own crises. Having only one person with the skills and capacity to coordinate stuff is a recipe for burnout.”
“We need to be able to respond to the increased state of burnout and depression in our movements.
I took that water and that knowledge back with me from Detroit, quietly determined that I would figure out a way to find the places where the movement work healed us instead of burning us out. And if I couldn’t find them, I would help make some.”
I am someone who is president of their union as well as neurodivergent, and when I crashed and burned for the entirety of this past February (I am now on meds and don’t wanna die, thx prozac 🙏🏻), it was in part due to the burnout of organizing, then bargaining, then taking on the presidency of a brand spanking new union all for 4 years straight. The absolute DREAD I had surrounding anything union-related, even something as simple as just receiving a union related email, when I was in the depths of this depressive episode had me second guessing so many things (though, to be fair, I had dread about…literally everything else in my life too. This feeling was not unique to my union work). Thankfully, after some rest, increased therapy, taking some time back in my parent’s house, and of course good ol’ meds (and I do recognize the privilege associated with all 4 of those things), I am starting to feel pleasure again, and therefore fulfillment again, when I do this union work (as well as in my work-work and in hobbies again). But it was scary there for a while. When you get so burned out that depression comes and steals away the things that used to mean so much to you??? Terrifying.
I listened to this book this time around, but I’m actually going to be buying a physical copy of this book to annotate because certain parts of this book spoke so vividly to me. I may update this review after I do that as well, who knowwwssss. In the meantime, here are a couple quotes that stuck out to me enough for me to repeatedly rewind the audio to transcribe them:
“Build capacity. Share the tools some place everyone can access them. Switch out roles. Plan for people giving care to have our own crises. Having only one person with the skills and capacity to coordinate stuff is a recipe for burnout.”
“We need to be able to respond to the increased state of burnout and depression in our movements.
I took that water and that knowledge back with me from Detroit, quietly determined that I would figure out a way to find the places where the movement work healed us instead of burning us out. And if I couldn’t find them, I would help make some.”
March 25, 2024
I would have loved to have someone like Leah in my life existing in the small Kashmiri community I grew up in. Having someone explain my femme-ness and my queerness to me the way they described the folks from the book would have been everything. I struggled the most with the timeline and trying to keep up with Leah as they moved from essay to essay.
September 3, 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!
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!
March 25, 2024
This was like the longest tweet ever. It wasn’t informative and it didn’t really paint a clear picture of who the author is. I was really expecting to like this book but am walking away confused and without any concrete takeaways.
August 15, 2020
not fixed and living life worth living, care webs, suicidality most useful essays; others less strong. prob would have appreciated more when this came out 2 years ago. wish relied less on “QTBIPOC” and lists of identifiers and did more definition/exploration of “femme” without just another binary of femme v. masc
March 24, 2024
Mmmmm did I want to like it? Yes! Did it have some redeeming parts? Also yes! But overall the writing was so. slow. And so not engaging. And the structure was so messy (if you can say there was a lot of structure). This is definitely more of a collection of ideas rather than a book and I wonder where the editor was on this one. Like I almost feel like the author was talking to themselves in a mirror about everything? Instead of trying to make it interesting for your readers? Positive though was I loved the care webs essay!
It also bugged me how often the author spoke about not being an expert on topics or trashing different areas of academia and then making large claims. Like there’s nothing wrong with being able to cite your sources? They even did it throughout the book? I felt like, while I agree wholeheartedly with everything they were saying, it all felt extremely opinion based. It also felt very very repetitive and I felt like I was reading the same handful of phrases in every essay?
Mmmmm unfortunately I would not recommend although I’ll be in search of something I would recommend.
It also bugged me how often the author spoke about not being an expert on topics or trashing different areas of academia and then making large claims. Like there’s nothing wrong with being able to cite your sources? They even did it throughout the book? I felt like, while I agree wholeheartedly with everything they were saying, it all felt extremely opinion based. It also felt very very repetitive and I felt like I was reading the same handful of phrases in every essay?
Mmmmm unfortunately I would not recommend although I’ll be in search of something I would recommend.
March 10, 2020
A good, thought provoking book that is an excellent introduction to the concept of disability justice and it’s history.
That said, I wanted more. Maybe I wanted the impossible? What is really at issue here for me is whether or not traditionally ‘femme’ (to borrow the author’s word) work (aka care work), can be monetized without creating another exploitative and oppressive system of control.
Are we for sale? Is our work for sale? Is care work for sale? These are the questions that unsettle me.
Right wing women often suggest that care work is women’s duty to god and to men, and must be done with a smile and absolutely for free. This is, of course, an extremely unacceptable state of affairs.
But can we not set limits to protect ourselves from exploitative care work, without charging money for it?
I want the best of all possible worlds.
There’s a lot more in the book than a discussion of the economics of care work, which is only mentioned in passing, and I recommend it especially for those unfamiliar with the concept of not needing to be ‘fixed’.
That said, I wanted more. Maybe I wanted the impossible? What is really at issue here for me is whether or not traditionally ‘femme’ (to borrow the author’s word) work (aka care work), can be monetized without creating another exploitative and oppressive system of control.
Are we for sale? Is our work for sale? Is care work for sale? These are the questions that unsettle me.
Right wing women often suggest that care work is women’s duty to god and to men, and must be done with a smile and absolutely for free. This is, of course, an extremely unacceptable state of affairs.
But can we not set limits to protect ourselves from exploitative care work, without charging money for it?
I want the best of all possible worlds.
There’s a lot more in the book than a discussion of the economics of care work, which is only mentioned in passing, and I recommend it especially for those unfamiliar with the concept of not needing to be ‘fixed’.
February 25, 2021
Disability justice is so often left out of social justice and anti-oppression work. Everyone should read this!
February 22, 2024
Wow! I’m really glad I got the chance to read this book. Care Work: Dreaming Disability Justice is a title that I’ve seen online for many years, but hadn’t ventured to read myself for some reason. It actually came up at the perfect time, given the recent Twitter discourse about whether exercise is a political necessity, ableism in “leftist” movements, and so on. While I am not sure if Leah Lakshmi Piepzna-Samarasinha (they/she) has weighed in on the most current round of nonsense, their contributions in Care Work are right on time for this discussion. In terms of full books, Care Work is the most in-depth exploration of disability justice principles that I’ve read so far, and what a great introduction.
I think this book is a perfect combination of criticism and imagination, where I learned not only about why our existing care systems are flawed, but also about the many solutions that are available using a disability justice framework. Piepzna-Samarasinha’s balance is very smart, as it helps readers digest a lot of information without feeling overwhelmed. The following sections will include some of my main takeaways from their essays, and my remaining questions.
Our familial care systems are broken
I was immediately struck by Piepzna-Samarasinha’s deconstruction of familial care as a sufficient system for disabled people. While I know from my own experiences that familial care systems are nowhere near perfect, I was surprised to hear how similar the coercive, abusive, and exploitative care provided by the government equated to the care provided by many nuclear families. This is all in line with what I’ve learned about family abolition—the family as the smallest unit of capitalism, and the training ground for the broader oppression we’ll experience in society. Still, this is something that didn’t fully “click” until hearing Piepzna-Samarasinha describe it. I also really enjoyed her ruminations about the need to break the binary disabled care recipient and abled caregiver. I think this is particularly important in family contexts, because I’ve seen how it can reinforce resentment and control otherwise.
Our institutional care systems are prisons
Of course, this topic is tied to the last one. When familial care systems fail, many disabled people are forced into psychiatric hospitals. I’m not going to lie—I was scared to read this section, because I am defensive about this topic due to some past experiences. In my limited understanding of the disability justice framework, I was anxious to read a series of perspectives that I felt did not understand that sometimes, families ask their loved ones to seek psychiatric care not because they don’t want to care for them at home, but because they have tried and failed to do so safely in the very worst moments. Reading Care Work was super helpful in this regard, because as Piepzna-Samarasinha explains disability justice perspective(s) on psychiatric wards in detail, I learned I actually agree with a lot of what the framework has to offer!! I learned that it’s less about blaming people for making use of their use of imperfect options, and more about trying to create care networks that result in better options. One topic they referenced many times that I’d like to learn more about is being a psychiatric survivor. Apparently in their hometown of Toronto, there is a strong overlap between disability justice activists, psych survivors, and PIC abolition. This seemed like a very promising connection, and one that I hope can become more prominent in other cities, too.
Our communal care systems are cults of personality
I was SO happy to see the author acknowledge that one of the main barriers to the glittering care networks they reference is social isolation, and the fact that many organizers (including disability justice organizers) keep talking about cOmMUniTy when they are really forming adult cliques. I think Piepzna-Samarasinha nails the way that popularity contests influence care networks when quoting one of her friends, who said that “I don’t ever want to depend on being liked or loved by the community for the right to shit in my toilet when I want to.” In general, these essays remark often on how we need to stop tying access to desirability, popularity, or even likability!!! Piepzna-Samarasinha makes multiple references to their support of fellow disabled people who are very rude or unlikable, and how even when they are not comfortable with directly supporting said unlikable person, this person is still very deserving of care and support from other sources. It’s a seemingly straightforward concept, but one that still felt really important for me to read about.
I was a bit disappointed by Piepzna-Samarasinha constantly returning to a care network that seemed very irreplicable (I think the person who organized it was named Lee or something similar? Hard to remember with an audiobook.) The author notes that this care network was heavily based on the popularity and vast social network of the person at the center of it, but still trots it out as a wonderful example too many times for my liking. I don’t know—this just rang somewhat contradictory for me, even in a book that is trying to show that we need tons of care models and systems, not just a single-fits-all approach. Like, the author is literally criticizing how most people only start caring about ableism when it impacts one of their close friends or family. However, the same author is promoting a care network that is mostly possible because people are attracted to someone, which causes them to care about supporting them?!? Make it make sense.
Other lessons
In some ways, the main thing this book did was open my eyes to the many possibilities for care work beyond what we see in our modern society. For these possibilities to become real, Piepzna-Samarasinha lays down a lot of key concepts from the disability justice framework, many of which blew my mind. These include concepts like the fact that everyone will become disabled at some point in life—something I know subconsciously (and through seeing my grandparents and parents age), but fear deeply. DJ frameworks practice a radical acceptance of this truth, not as something to fear, but an opportunity that is there to shape a world that can better support the billions of disabled people on our planet. This is partially because of how the disability justice framework reframes many concepts related to care. This framework sees providing access as an opportunity for love and relationship building, rather than a burden. It reframes the traditional “crash and burn” care models as the only possible outcome of supporting others, and instead offers care models that prioritize sustainability, slowness, and building for the long haul. Finally, this framework celebrates the immense knowledge and skills of disabled people, themselves!! Piepzna-Samarasinha shows how the disability justice moves beyond the “pathetic cripple” or “supercrip” binary to show disabled people as human beings who deserve care for themselves, and also regularly care for others—including abled people. There are so many great lessons in this book about items like how to travel and deal with various ailments, or how increased access provisions can support abled people, too. All of these lessons are examples of the “disabled brilliance” that is present within more sustainable models of care work.
I also learned a lot from Piepzna-Samarasinha’s discussion of how disability justice is a framework that allows for the understanding of how disability intersects with other forms of oppression. For instance, they skillfully outline how all this is very relevant for people of color. This relevance includes how our society’s punishment and disposal of disabled people is rooted in colonialism and slavery, and also how specific access needs (such as fragrance-free environments) can be tied to people of color’s higher likelihoods to be exposed to harsh chemicals in their work and home contexts, due to oppressive labor conditions as well as environmental racism.
The author makes a lot of points about the exploitation of femmes who perform care work. While I think these points mostly should’ve been extrapolated to all gender-oppressed people (more on this later), I did find a lot of them to be SUPER relevant to current challenges that so many people are having in our political organizations. Piepzna-Samarasinha discusses how care work often keeps movement spaces functioning, but is not seen as a respected skill, largely because of the kinds of people who perform this work. I really appreciated the ideas she had for resolving what she calls femmephobia in care networks, by creating a system of “fair trade care economics”, where everyone is able to opt in to the care they’d like to give and receive, and where a much broader group of people learn about the skills necessary for care work. This would create a system where there is less monoculture, more variety in care options, and ultimately greater room for boundaries, taking breaks, and so on! I love this idea, and really want to think about how I can help make it happen in my own life.
Remaining questions
Piepzna-Samarasinha is very honest about the things they don’t yet know about care work, in a way I found to be refreshing and humble. However, this means that readers (including myself) will leave this book with a lot of unanswered questions. Here are a few of mine:
1. I loved when this book discussed care models that don’t rely solely on paid help, while also acknowledging that care models that only function on popularity can’t be the sole solution. However, I am curious about how a disability justice framework incorporates labor rights for paid caregivers into this, too?
2. I have always related more to Martha than Mary. Because of this, I just have a really hard time understanding how even the most promising care networks don’t weigh more on some people than others, in a way that ultimately leads to resentment. So, I am eager to read more about issues of SCALE and BURDEN within care networks, along with a discussion about access needs that includes more frank conversation about burnout and demand avoidance.
3. I *HATE* when people lie about Parable of the Sower/Talents. Lauren left LOTS of people behind/out of Earthseed, and killed people to protect her “chosen ones.” Why are we never mentioning this when endlessly praising this book?
4. I really liked how Piepzna-Samarasinha tries to connect femmephobia, care work, organizer chauvinism, and disability justice altogether. BUT: like nat, another Goodreads reviewer, notes, some of the arguments end up being unnecessarily binary. In so many places, the author seems to be using “femmes” as a stand-in for trans women and all AFAB people, which is not fair to transmasc people or agender people like myself, who are neither femme nor masc. I know many transmascs who are also expected to be permanently available for care work, and so Piepzna-Samarasinha’s binary of all masculine people as demanding and uninterested in reciprocating care work struck me as particularly unfair. In other words/how my friend Sam said this, I want this author to define what she means by femmes QUICKLY!!! Their use of this term, along with “Black and Brown”, is weird and inconsistent throughout this collection.
Final Thoughts
I would definitely recommend this essay collection, as I think it’s an important/helpful start for those not as well-versed in this area (like myself.) In terms of format, I do think this would’ve been a nice book to read physically. A lot of section headers, names, and source notes were hard to keep track of in the audiobook version. However, I am thankful to have accessed the audiobook due to the Queer Liberation Library, a free collection of eBooks and audiobooks available on Libby.
Reflection + Application Corner
This is the section tied to one of my goals in 2024, which is to more deeply reflect on the actions I can take in response to the nonfiction/issue-based books I read.
I think my main reflection from Care Work is the importance of finding multiple ways to be involved in sustainable, communal care networks. Admittedly, a lot of my care work has been tied up in supporting family members. I don’t think this is a problem, and it’s certainly something I hope to keep doing, with more eyes towards the autonomy of my disabled relatives, as this book has reiterated the fact that coercive and abusive care is a huge issue with familial systems.
At the same time, I am hoping to understand more ways to support disabled community members here in Durham. I am hoping to find out more about the Autism Support and Advocacy Center, a local organization that offers disability justice workshops and a host of other resources. For the reasons I mentioned earlier, I am a bit scared to join another organization full-time, but there are lots of opportunities to attend events, support specific programs, and become more involved in local care networks—or at least I hope this is possible! I think part of finding more sustainable care models for myself looks like figuring out how to become more consistently present in causes I care about, while also accepting that I am not a people person, and so my consistency requires my involvement in less social capacity. So, my search for behind-the-scenes and low-contact support options continues!
I think this book is a perfect combination of criticism and imagination, where I learned not only about why our existing care systems are flawed, but also about the many solutions that are available using a disability justice framework. Piepzna-Samarasinha’s balance is very smart, as it helps readers digest a lot of information without feeling overwhelmed. The following sections will include some of my main takeaways from their essays, and my remaining questions.
Our familial care systems are broken
I was immediately struck by Piepzna-Samarasinha’s deconstruction of familial care as a sufficient system for disabled people. While I know from my own experiences that familial care systems are nowhere near perfect, I was surprised to hear how similar the coercive, abusive, and exploitative care provided by the government equated to the care provided by many nuclear families. This is all in line with what I’ve learned about family abolition—the family as the smallest unit of capitalism, and the training ground for the broader oppression we’ll experience in society. Still, this is something that didn’t fully “click” until hearing Piepzna-Samarasinha describe it. I also really enjoyed her ruminations about the need to break the binary disabled care recipient and abled caregiver. I think this is particularly important in family contexts, because I’ve seen how it can reinforce resentment and control otherwise.
Our institutional care systems are prisons
Of course, this topic is tied to the last one. When familial care systems fail, many disabled people are forced into psychiatric hospitals. I’m not going to lie—I was scared to read this section, because I am defensive about this topic due to some past experiences. In my limited understanding of the disability justice framework, I was anxious to read a series of perspectives that I felt did not understand that sometimes, families ask their loved ones to seek psychiatric care not because they don’t want to care for them at home, but because they have tried and failed to do so safely in the very worst moments. Reading Care Work was super helpful in this regard, because as Piepzna-Samarasinha explains disability justice perspective(s) on psychiatric wards in detail, I learned I actually agree with a lot of what the framework has to offer!! I learned that it’s less about blaming people for making use of their use of imperfect options, and more about trying to create care networks that result in better options. One topic they referenced many times that I’d like to learn more about is being a psychiatric survivor. Apparently in their hometown of Toronto, there is a strong overlap between disability justice activists, psych survivors, and PIC abolition. This seemed like a very promising connection, and one that I hope can become more prominent in other cities, too.
Our communal care systems are cults of personality
I was SO happy to see the author acknowledge that one of the main barriers to the glittering care networks they reference is social isolation, and the fact that many organizers (including disability justice organizers) keep talking about cOmMUniTy when they are really forming adult cliques. I think Piepzna-Samarasinha nails the way that popularity contests influence care networks when quoting one of her friends, who said that “I don’t ever want to depend on being liked or loved by the community for the right to shit in my toilet when I want to.” In general, these essays remark often on how we need to stop tying access to desirability, popularity, or even likability!!! Piepzna-Samarasinha makes multiple references to their support of fellow disabled people who are very rude or unlikable, and how even when they are not comfortable with directly supporting said unlikable person, this person is still very deserving of care and support from other sources. It’s a seemingly straightforward concept, but one that still felt really important for me to read about.
I was a bit disappointed by Piepzna-Samarasinha constantly returning to a care network that seemed very irreplicable (I think the person who organized it was named Lee or something similar? Hard to remember with an audiobook.) The author notes that this care network was heavily based on the popularity and vast social network of the person at the center of it, but still trots it out as a wonderful example too many times for my liking. I don’t know—this just rang somewhat contradictory for me, even in a book that is trying to show that we need tons of care models and systems, not just a single-fits-all approach. Like, the author is literally criticizing how most people only start caring about ableism when it impacts one of their close friends or family. However, the same author is promoting a care network that is mostly possible because people are attracted to someone, which causes them to care about supporting them?!? Make it make sense.
Other lessons
In some ways, the main thing this book did was open my eyes to the many possibilities for care work beyond what we see in our modern society. For these possibilities to become real, Piepzna-Samarasinha lays down a lot of key concepts from the disability justice framework, many of which blew my mind. These include concepts like the fact that everyone will become disabled at some point in life—something I know subconsciously (and through seeing my grandparents and parents age), but fear deeply. DJ frameworks practice a radical acceptance of this truth, not as something to fear, but an opportunity that is there to shape a world that can better support the billions of disabled people on our planet. This is partially because of how the disability justice framework reframes many concepts related to care. This framework sees providing access as an opportunity for love and relationship building, rather than a burden. It reframes the traditional “crash and burn” care models as the only possible outcome of supporting others, and instead offers care models that prioritize sustainability, slowness, and building for the long haul. Finally, this framework celebrates the immense knowledge and skills of disabled people, themselves!! Piepzna-Samarasinha shows how the disability justice moves beyond the “pathetic cripple” or “supercrip” binary to show disabled people as human beings who deserve care for themselves, and also regularly care for others—including abled people. There are so many great lessons in this book about items like how to travel and deal with various ailments, or how increased access provisions can support abled people, too. All of these lessons are examples of the “disabled brilliance” that is present within more sustainable models of care work.
I also learned a lot from Piepzna-Samarasinha’s discussion of how disability justice is a framework that allows for the understanding of how disability intersects with other forms of oppression. For instance, they skillfully outline how all this is very relevant for people of color. This relevance includes how our society’s punishment and disposal of disabled people is rooted in colonialism and slavery, and also how specific access needs (such as fragrance-free environments) can be tied to people of color’s higher likelihoods to be exposed to harsh chemicals in their work and home contexts, due to oppressive labor conditions as well as environmental racism.
The author makes a lot of points about the exploitation of femmes who perform care work. While I think these points mostly should’ve been extrapolated to all gender-oppressed people (more on this later), I did find a lot of them to be SUPER relevant to current challenges that so many people are having in our political organizations. Piepzna-Samarasinha discusses how care work often keeps movement spaces functioning, but is not seen as a respected skill, largely because of the kinds of people who perform this work. I really appreciated the ideas she had for resolving what she calls femmephobia in care networks, by creating a system of “fair trade care economics”, where everyone is able to opt in to the care they’d like to give and receive, and where a much broader group of people learn about the skills necessary for care work. This would create a system where there is less monoculture, more variety in care options, and ultimately greater room for boundaries, taking breaks, and so on! I love this idea, and really want to think about how I can help make it happen in my own life.
Remaining questions
Piepzna-Samarasinha is very honest about the things they don’t yet know about care work, in a way I found to be refreshing and humble. However, this means that readers (including myself) will leave this book with a lot of unanswered questions. Here are a few of mine:
1. I loved when this book discussed care models that don’t rely solely on paid help, while also acknowledging that care models that only function on popularity can’t be the sole solution. However, I am curious about how a disability justice framework incorporates labor rights for paid caregivers into this, too?
2. I have always related more to Martha than Mary. Because of this, I just have a really hard time understanding how even the most promising care networks don’t weigh more on some people than others, in a way that ultimately leads to resentment. So, I am eager to read more about issues of SCALE and BURDEN within care networks, along with a discussion about access needs that includes more frank conversation about burnout and demand avoidance.
3. I *HATE* when people lie about Parable of the Sower/Talents. Lauren left LOTS of people behind/out of Earthseed, and killed people to protect her “chosen ones.” Why are we never mentioning this when endlessly praising this book?
4. I really liked how Piepzna-Samarasinha tries to connect femmephobia, care work, organizer chauvinism, and disability justice altogether. BUT: like nat, another Goodreads reviewer, notes, some of the arguments end up being unnecessarily binary. In so many places, the author seems to be using “femmes” as a stand-in for trans women and all AFAB people, which is not fair to transmasc people or agender people like myself, who are neither femme nor masc. I know many transmascs who are also expected to be permanently available for care work, and so Piepzna-Samarasinha’s binary of all masculine people as demanding and uninterested in reciprocating care work struck me as particularly unfair. In other words/how my friend Sam said this, I want this author to define what she means by femmes QUICKLY!!! Their use of this term, along with “Black and Brown”, is weird and inconsistent throughout this collection.
Final Thoughts
I would definitely recommend this essay collection, as I think it’s an important/helpful start for those not as well-versed in this area (like myself.) In terms of format, I do think this would’ve been a nice book to read physically. A lot of section headers, names, and source notes were hard to keep track of in the audiobook version. However, I am thankful to have accessed the audiobook due to the Queer Liberation Library, a free collection of eBooks and audiobooks available on Libby.
Reflection + Application Corner
This is the section tied to one of my goals in 2024, which is to more deeply reflect on the actions I can take in response to the nonfiction/issue-based books I read.
I think my main reflection from Care Work is the importance of finding multiple ways to be involved in sustainable, communal care networks. Admittedly, a lot of my care work has been tied up in supporting family members. I don’t think this is a problem, and it’s certainly something I hope to keep doing, with more eyes towards the autonomy of my disabled relatives, as this book has reiterated the fact that coercive and abusive care is a huge issue with familial systems.
At the same time, I am hoping to understand more ways to support disabled community members here in Durham. I am hoping to find out more about the Autism Support and Advocacy Center, a local organization that offers disability justice workshops and a host of other resources. For the reasons I mentioned earlier, I am a bit scared to join another organization full-time, but there are lots of opportunities to attend events, support specific programs, and become more involved in local care networks—or at least I hope this is possible! I think part of finding more sustainable care models for myself looks like figuring out how to become more consistently present in causes I care about, while also accepting that I am not a people person, and so my consistency requires my involvement in less social capacity. So, my search for behind-the-scenes and low-contact support options continues!
August 5, 2023
Wonderful. Somehow, this book came at exactly the right time in my life, partly from some sudden (perhaps divine? it was that inexplicable) urge to look through an old flash drive and partly from being drawn to this work amongst my haphazard clutter of old college stuff because I’d been thinking hard about my heart.
Piepzna-Samarasinha has an unapologetic style, never mincing words and preaching facts so much so I can hear a chorus of “yasss icon” and snaps after every essay. Impassioned and incisive, ardent and piercing… phenomenal. Each essay is also an inviting conversation, in the figurative and sometimes in the literal. And to honor their style in my own way, starting now I’m going to scrap the typical review jargon I’ve been using for my past 3 books (yikes I guess I’ve only read 3 books this year, but 4 counting positive now) and write from my heart. So it’ll be a bit more personal. And it’ll be a bit of a long, but hopefully fun, ride.
I have a heart condition. I now know it’s called a congenital heart defect in doctor speak. I don’t know the specific science behind it because I don’t know the exact condition; I haven’t had the chance to see the medical report because the report was lost in bottomless piles of papers at home. I have known how it’s affected me my whole life because with it comes feelings. So many feelings.
It’s frustrating because “heart condition” or “have a heart murmur” feels too vague of an explanation to the curious askers. It’s alienating because I don’t know who else has a heart condition and I don’t know how to ask. It’s difficult because sometimes I try to do a group physical activity and push myself too hard, realize the solution is to communicate to others that I overshot and need a break, but am so out of breath I can’t even do that. It’s confusing because I thought I was only alive because of modern medicine and being born in the US, but the reason I was born here was because of a war that pushed my parents out of their country, (a war by the way that saw environmental warfare atrocities from Agent Orange that the land and its inhabitants and their ascendants are still trying to recover from), but the probable reason I have a heart condition is because I was born in the US to my mom who worked and works around unsafe chemicals every day 10/7 and “the body keeps the score” to quote an expression from the title of a book I haven’t read by Besser van der Kolk (in this case it’s my body) not to mention the forces of colonization that led to many Vietnamese femmes taking hazardous jobs in the nail industry in the first place under the guise of not-less-sinister assimilation to American culture.
But Care Work gives me imaginative and real answers that I didn’t even know I was looking for. I learned about entire cultures and lineages of SDQTBIPOC. That the ableist narrative pushes for a future that is done and dusted, cured and crusted. I learned that perhaps this random fear of and resignation to an early death isn’t so random. But also I can change that narrative and stop thinking from a deficiency model where there’s a “fix.” I learned how to interpret my relative able-bodiedness and neurotypicality (also, from what standards?) while understanding where my heart fits into the puzzle. In short, a look at wholly myself and an entire reemergence to where I can not assume and learn and grow and heal and do better. I learned that the codependency I found so shameful and embarrassing can be reimagined - what does it mean to receive care from the people in my life with compassion, self-compassion, and grace, self-grace? Actual community care meaning people in your community who love you in spite of how AHHHH and AHHHH you can be about everything and making it fun to care for you. I learned that the bed is a site of activist work and to not be ashamed for staying in bed, or for being brief sometimes, or for cancelling. Although that doesn’t mean license to be awful. I learned that I have a slow lifestyle and though I do envy faster lifestyles sometimes, it’s my very own speed of living. I don’t need to shape my heart into “normalcy.”
I’m going to end with a part that touched home for me: healing. So many people around me are healers. They make efforts and show up for their loved ones and themselves without asking. But I always operated from the thought that there’ll be one day where things just get better. Just like that. Now, I feel like my thoughts have been flipped on their head because of this book and all the disability activists pointing to reimaginings of healing and grief and brokenness. And indeed, it’s scary to reject a non-whole future. Piepzna-Samarasinha even writes “believing that some things just aren’t healable is anathema to most everyone, radical and not.” But they quote this from Eli Claire: “Even so, I know the past will again pound through my body-mind … I’ve come to know that there will be no cure. I claim brokenness to make this irrevocable shattering visible… Cure dismisses resilience, survival, the spider web of fractures, cracks, and seams. Its promise holds power precisely because none of us want to be broken. But I’m curious: what might happen if we were to accept, claim, embrace our brokenness?” And in response, they write: “I believe in sitting in the space of prayer, in the void of not always knowing who is disabled and what their legacy means as a disability justice space. I feel like we are passing knowledge back and forth, beyond the beyond. Being closer to the dead than the living is another kind of crip relationship.” I don’t have much more to say, just simmering…
If you made it this far, thank you so so much for reading. There’s so much more I can write, but you should go read the book yourself!
Piepzna-Samarasinha has an unapologetic style, never mincing words and preaching facts so much so I can hear a chorus of “yasss icon” and snaps after every essay. Impassioned and incisive, ardent and piercing… phenomenal. Each essay is also an inviting conversation, in the figurative and sometimes in the literal. And to honor their style in my own way, starting now I’m going to scrap the typical review jargon I’ve been using for my past 3 books (yikes I guess I’ve only read 3 books this year, but 4 counting positive now) and write from my heart. So it’ll be a bit more personal. And it’ll be a bit of a long, but hopefully fun, ride.
I have a heart condition. I now know it’s called a congenital heart defect in doctor speak. I don’t know the specific science behind it because I don’t know the exact condition; I haven’t had the chance to see the medical report because the report was lost in bottomless piles of papers at home. I have known how it’s affected me my whole life because with it comes feelings. So many feelings.
It’s frustrating because “heart condition” or “have a heart murmur” feels too vague of an explanation to the curious askers. It’s alienating because I don’t know who else has a heart condition and I don’t know how to ask. It’s difficult because sometimes I try to do a group physical activity and push myself too hard, realize the solution is to communicate to others that I overshot and need a break, but am so out of breath I can’t even do that. It’s confusing because I thought I was only alive because of modern medicine and being born in the US, but the reason I was born here was because of a war that pushed my parents out of their country, (a war by the way that saw environmental warfare atrocities from Agent Orange that the land and its inhabitants and their ascendants are still trying to recover from), but the probable reason I have a heart condition is because I was born in the US to my mom who worked and works around unsafe chemicals every day 10/7 and “the body keeps the score” to quote an expression from the title of a book I haven’t read by Besser van der Kolk (in this case it’s my body) not to mention the forces of colonization that led to many Vietnamese femmes taking hazardous jobs in the nail industry in the first place under the guise of not-less-sinister assimilation to American culture.
But Care Work gives me imaginative and real answers that I didn’t even know I was looking for. I learned about entire cultures and lineages of SDQTBIPOC. That the ableist narrative pushes for a future that is done and dusted, cured and crusted. I learned that perhaps this random fear of and resignation to an early death isn’t so random. But also I can change that narrative and stop thinking from a deficiency model where there’s a “fix.” I learned how to interpret my relative able-bodiedness and neurotypicality (also, from what standards?) while understanding where my heart fits into the puzzle. In short, a look at wholly myself and an entire reemergence to where I can not assume and learn and grow and heal and do better. I learned that the codependency I found so shameful and embarrassing can be reimagined - what does it mean to receive care from the people in my life with compassion, self-compassion, and grace, self-grace? Actual community care meaning people in your community who love you in spite of how AHHHH and AHHHH you can be about everything and making it fun to care for you. I learned that the bed is a site of activist work and to not be ashamed for staying in bed, or for being brief sometimes, or for cancelling. Although that doesn’t mean license to be awful. I learned that I have a slow lifestyle and though I do envy faster lifestyles sometimes, it’s my very own speed of living. I don’t need to shape my heart into “normalcy.”
I’m going to end with a part that touched home for me: healing. So many people around me are healers. They make efforts and show up for their loved ones and themselves without asking. But I always operated from the thought that there’ll be one day where things just get better. Just like that. Now, I feel like my thoughts have been flipped on their head because of this book and all the disability activists pointing to reimaginings of healing and grief and brokenness. And indeed, it’s scary to reject a non-whole future. Piepzna-Samarasinha even writes “believing that some things just aren’t healable is anathema to most everyone, radical and not.” But they quote this from Eli Claire: “Even so, I know the past will again pound through my body-mind … I’ve come to know that there will be no cure. I claim brokenness to make this irrevocable shattering visible… Cure dismisses resilience, survival, the spider web of fractures, cracks, and seams. Its promise holds power precisely because none of us want to be broken. But I’m curious: what might happen if we were to accept, claim, embrace our brokenness?” And in response, they write: “I believe in sitting in the space of prayer, in the void of not always knowing who is disabled and what their legacy means as a disability justice space. I feel like we are passing knowledge back and forth, beyond the beyond. Being closer to the dead than the living is another kind of crip relationship.” I don’t have much more to say, just simmering…
If you made it this far, thank you so so much for reading. There’s so much more I can write, but you should go read the book yourself!
March 16, 2024
Will say from the top that this is a book that needs to exist, as it has some hard truths that people, myself included, need to learn and know. That said, there were pros and cons with my reading. I think a physical read would've been a better intake experience than what I went with on audiobook. A lot of the times, I would end up lost or zone out on where we were, or which essay was happening. And the sheer number of organizations the author covers/lists very much ran together for me after awhile. But the parts I did enjoy in particular happened more toward the end, where the author delves into therapy accessibility and generational trauma, and how it can snowball.
Overall, I'm glad I read this, as it really does force you to look at the often harsh and ugly treatment of the disabled, and how it does sort of need to change from the ground up, but it's just some concepts flew over my head in a sense.
Overall, I'm glad I read this, as it really does force you to look at the often harsh and ugly treatment of the disabled, and how it does sort of need to change from the ground up, but it's just some concepts flew over my head in a sense.
July 18, 2024
the PERFECT start to disability pride month. i feel like i learned so much about so much and i’m grateful for that.
July 4, 2021
3.5 ⭐️
I learned a lot from this book and loved the parts about collective care (and it’s complexities), anti-ableist visions of healing, the intersection between disability and race, and how to make activism more accessible and sustainable for disabled and chronically ill people.
Throughout the book, however, Leah talks about gender in terms of a binary between “femmes” and “masculine people.” This is not only reductive and lacking in nuance, but suggests that butch women and masc-presenting non-binary people who are perceived as women have similar experiences to cis men and that it is only “femmes and feminine people” who experience misogyny and the misogynistic expectation that women should provide free care and labour. This is untrue and I think it’s really shitty to lump butch women into a gender category with cis men, particularly as she talks about “masculine people” being misogynistic. Perhaps it was a badly-worded attempt at inclusive language, but I expected better from a book about social justice written by a queer person.
I learned a lot from this book and loved the parts about collective care (and it’s complexities), anti-ableist visions of healing, the intersection between disability and race, and how to make activism more accessible and sustainable for disabled and chronically ill people.
Throughout the book, however, Leah talks about gender in terms of a binary between “femmes” and “masculine people.” This is not only reductive and lacking in nuance, but suggests that butch women and masc-presenting non-binary people who are perceived as women have similar experiences to cis men and that it is only “femmes and feminine people” who experience misogyny and the misogynistic expectation that women should provide free care and labour. This is untrue and I think it’s really shitty to lump butch women into a gender category with cis men, particularly as she talks about “masculine people” being misogynistic. Perhaps it was a badly-worded attempt at inclusive language, but I expected better from a book about social justice written by a queer person.
December 30, 2018
I just finished this book and still try to gather all my thoughts. In short: Please, go read this insightful, brilliant, nuanced essay collection.
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Leah Lakshmi Piepzna-Samarasinha writes about the history of disability justice (and fear of this movement being co-opted), rethinking care and access, suicidal ideation, new models of survivorhood, 'call-out culture', and making space for disabled/ chronical ill elders. Centering the experiences and knowledge of disabled/ sick/ Mad QTPoC, especially femmes, Piepzna-Samarasinha documents activist history (which gets often forgotten or over-written), offers practical tips (like her "Chronically Ill Touring Artist Pro Tipps"), discusses conceptual work (for example on 'care webs'), and shows attempts to make things works. There are essays, lists, and conversations with other artists and activists in this book and it all adds up to a memorable read; an emotional read. I learned so much.
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Leah Lakshmi Piepzna-Samarasinha writes about the history of disability justice (and fear of this movement being co-opted), rethinking care and access, suicidal ideation, new models of survivorhood, 'call-out culture', and making space for disabled/ chronical ill elders. Centering the experiences and knowledge of disabled/ sick/ Mad QTPoC, especially femmes, Piepzna-Samarasinha documents activist history (which gets often forgotten or over-written), offers practical tips (like her "Chronically Ill Touring Artist Pro Tipps"), discusses conceptual work (for example on 'care webs'), and shows attempts to make things works. There are essays, lists, and conversations with other artists and activists in this book and it all adds up to a memorable read; an emotional read. I learned so much.
July 19, 2019
This is definitely my #1 top recommendation of the year and one of the best and most important books I've EVER read. I want everyone I've ever met to read this book, I want everyone I'm ever going to meet to read this book. If I had a million dollars right now I would buy copies of this book for everyone I know.
Update: Re-read it 7 months later. Still feel the exact same way.
Update: Re-read it 7 months later. Still feel the exact same way.
January 26, 2023
Something unprecedented and LOUD. From a 40-something queer, femme, disabled South Asian poet and writer about the abundant knowledge + skills of sick/disabled folx and how care work + healing justice is vitally necessary to anchor the work of all justice/activism. Healing justice sustains, remains, feeds the people fighting where ableist-centered activism burns us out.
Some snippets: Disabled people as doulas birthing other people (me included) into disability acknowledgement + justice. Indigenous ways of perceiving and understanding disability as priority and kindred. Critical crip lenses for evaluating "what would allow us to give and receive care" (emphasis added) — not! just! offer! it! A meditation on Gloria Anzaldúa's own sick and disabled life, and what it has meant for so many sick and disabled writers that they are able to dream wild dreams for everyone else because they have been slowed, bed-bound, and denied participation from other parts of life. OH, how I felt that when she juxtaposed the trendy glorified bath-time and bubbles self-care movement vs. the dirty + daily + revolutionary work of self-care as love, self-care as survival that femme disabled POC like she and myself know intimately — not because we like to treat ourselves, but because we want to live.
There is a section very nearing medical advice that seemed dangerous to include without much disclosure that the solutions offered (simply take X dose of Advil, or activated charcoal, or Y herbs) are hiiighly limited by one's preexisting medications/conditions and other factors — dangerous not necessarily to anyone well-read or very cautious about what they take to manage pain and exhaustion, but perhaps younger readers or anyone who might heed this advice with no further research.
Sidenote, I loved that in one part, Leah literally writes how she pushed to get this book press-published so readers could borrow copies from the library (self-published books are less likely to make it into libraries). I listened to this on audiobook because I requested my library to add it to their collection, and they did (the next day!). It feels great making beloved resources available to the public + immediately seeing it get picked up by a waitlist of readers who may not have heard of it otherwise.
Some snippets: Disabled people as doulas birthing other people (me included) into disability acknowledgement + justice. Indigenous ways of perceiving and understanding disability as priority and kindred. Critical crip lenses for evaluating "what would allow us to give and receive care" (emphasis added) — not! just! offer! it! A meditation on Gloria Anzaldúa's own sick and disabled life, and what it has meant for so many sick and disabled writers that they are able to dream wild dreams for everyone else because they have been slowed, bed-bound, and denied participation from other parts of life. OH, how I felt that when she juxtaposed the trendy glorified bath-time and bubbles self-care movement vs. the dirty + daily + revolutionary work of self-care as love, self-care as survival that femme disabled POC like she and myself know intimately — not because we like to treat ourselves, but because we want to live.
There is a section very nearing medical advice that seemed dangerous to include without much disclosure that the solutions offered (simply take X dose of Advil, or activated charcoal, or Y herbs) are hiiighly limited by one's preexisting medications/conditions and other factors — dangerous not necessarily to anyone well-read or very cautious about what they take to manage pain and exhaustion, but perhaps younger readers or anyone who might heed this advice with no further research.
Sidenote, I loved that in one part, Leah literally writes how she pushed to get this book press-published so readers could borrow copies from the library (self-published books are less likely to make it into libraries). I listened to this on audiobook because I requested my library to add it to their collection, and they did (the next day!). It feels great making beloved resources available to the public + immediately seeing it get picked up by a waitlist of readers who may not have heard of it otherwise.
July 22, 2022
A great collection of first person stories from a diverse community of queer and people of color disability activists! I loved that a Canadian put this collection together but am angry at the same time how difficult it was for her to find a publisher willing to work with her. These stories are a much needed look at a section of the disabled community that has unique challenges and often don't get much of a voice. Great on audio and extremely powerful. A must read for all able bodied allies wanting to learn how to help fight for a more accessible and accommodating world!
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July 25, 20242024 reads: 201/250
in this collection of essays, leah lakshmi piepzna-samarasinha discusses the politics of disability justice, centering queer, trans, black, and brown people. i have not read nearly enough books centering disability justice, and unfortunately even fewer centering queer, trans, and non-white people, so i learned a lot from this book. this was also written with disabled people being the intended audience, which i loved to see. i can’t wait to read more from leah lakshmi piepzna-samarasinha!
in this collection of essays, leah lakshmi piepzna-samarasinha discusses the politics of disability justice, centering queer, trans, black, and brown people. i have not read nearly enough books centering disability justice, and unfortunately even fewer centering queer, trans, and non-white people, so i learned a lot from this book. this was also written with disabled people being the intended audience, which i loved to see. i can’t wait to read more from leah lakshmi piepzna-samarasinha!
April 16, 2024
excellent and necessary.
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