Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha

Care Work: Dreaming Disability Justice Reviews

• 
  Thomas

  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.
• 
  Corvus

  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.
• 
  Danika at The Lesbrary

  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.
• 
  Tyler J Gray

  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!
• 
  Sasha

  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!
• 
  Maia

  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).
• 
  Sarah Cavar

  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.
• 
  Samantha Shain

  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.
• 
  yuni

  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
• 
  Devin

  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’.
• 
  Andrea

  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!
• 
  Joy

  Disability justice is so often left out of social justice and anti-oppression work. Everyone should read this!
• 
  Charlott

  I just finished this book and still try to gather all my thoughts. In short: Please, go read this insightful, brilliant, nuanced essay collection.
  _
  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.
• 
  Shannon

  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!
• 
  Kathy

  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.
• 
  nat

  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.
• 
  candide_in_ohio

  By far the most life-changing, mind-blowing, paradigm-shifting book I’ve read in years-perhaps ever.
• 
  cat

  Oh, how I needed this gift of a book. (and by the way, you do too, likely)
  
  The words laid down by Leah Lakshmi Piepzna-Samarasinha in "Care Work: Dreaming Disability Justice" lifted my soul this week. Reminded me of the amazing resilience and gifts that every single one of us brings to this work of being alive and trying to make a better world. Centered me in the ways that we have to constantly be learning new ways forward that tear down old myths/structures/inequities. It also deeply reminded me that my struggling sick/disabled body is valid. That the ways that I need to move differently through the world now due to my chronic knee pain and my still-healing lungs are right and deserve both care and accommodation. That there is a different wisdom and a new world that I am growing when I care for my own needs and those around me - and that this is true in both my personal and professional life ....
  
  This book also echoed and cemented so much of what I believe about the brilliance and the pain of survivorship, and about the ways that living through all of it is the best act of political warfare that we can embody. That surviving is enough some days - and that healing is not something that happens and then is done.
  
  Seriously, you all, practically the WHOLE book is highlighted and marked up because I want to carry these words with me - write them on my heart and on flipcharts and on notes that I leave for myself and others everywhere that I go so that I (we) can remember that we are a collective of survivors and that is revolutionary.
  
  I am just gonna drop a bunch of wisdom from this amazing book below for you (and for me) to come back to when you need it.
  
  "A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met."
  
  "As it turned out, we had some really different understandings of trauma, healing, and survivorhood. She really thought that childhood sexual abuse was something to manage, something you could get over and “move on” from, a cut you stitch up with butterfly bandages. I thought, My abuse is not something to resolve, a number on a pain scale, a simple wound that can go away with Neosporin. My trauma is a fucking five-act opera, a gorgeous and tough dress made out of my best scars, a seed library, a Gutenberg Bible, a thunderstorm to climb and buck in a small plane, a mountain range, a supernova to map."
  
  "The promise of cure, of a simple way to be more at peace, that lies inside the “good” survivor is tempting. Of course we want to feel better. As a young survivor, I was in torment every single second of every day, and I wanted not to be. I wanted to fuck. I wanted to stop being so gone from my body that the whole world looked like a TV screen. I wanted to not feel like broken glass. I wanted to be able to think or talk about something other than my incest memories 24-7. I wanted those things because it hurt, and because of the rolled eyes, imagined and real, of the people around me who were impatient at me going on about all that depressing stuff all the time. There was more. I wanted to interrupt the cycles of abuse and intergenerational violence in my family. I wanted to grow up to have relationships that weren’t violent. To know pleasure, not martyrdom. Most of all, I wanted to be happy, and I wanted to know freedom, joy, and liberation. Even though, and especially because, I had no idea what those things actually felt like. These are powerful, fierce survivor freedom dreams. Dreams like these are where I see many survivors in our fiercest power as revolutionaries."
  
  "There is revolution in survivors remembering the omnipresence of rape, insisting that we remember shit right, and using our deepest dreams to create new worlds that we have never seen. There’s nothing wrong with wanting less pain, or a different experience of it. There’s nothing wrong with wanting to transform generations of passed-down trauma. But what gets more complicated is when those desires bleed into the ableist model of cure that’s the only model most of us have for having more ease and less pain. That model and its harsh binary of successful and fixed or broken and fucked is part of what contributes to suicidality and struggle in long-term survivors. I’ve seen survivors, including myself, struggle with feelings of failure and self-hatred when we’re thirty, forty, fifty, sixty, and older and we’re still triggered, grieving, and remembering—when we haven’t reached that mythic “cured place.” In writing this essay, I want to speak to how the thing that keeps me alive and thriving is my work as a disabled survivor to undo pick apart that binary and to name its poison as ablest. To bring together crip and survivor struggles and knowledge. To map a new model of survival where my scars and my still being crazy in adulthood are not signs that I’ve failed."
  
  "And I ask the dangerous question: What if more survivors—and the therapists and healing spaces available to us—had a Mad, crip idea of healing, one that was not about cure but about increasing possibility, about learning, about trying to love all our survivor madness, and about shifting our communities to ones where crazy was really okay? What if there were models for long-term grief? Where we had more space in our jobs and homes where it was okay to grieve—like long-term lots of paid grief time off? What would it be like if our communities really, really believed that grief was sacred and valuable, a source of life-giving knowledge, instead of a pain in the ass? What if bad survivors were good survivors? What if all survivors were beautiful in our mess? And, even more dangerous, I want to venture: What if some things aren’t fixable? What if some things really never will be the same—and that might not be great, but it might be okay? I believe in healing and I believe in it happening in ways that are mind-blowing and far beyond what anyone thought possible. But I also wonder, what if some trauma wounds really never will go away—and we might still have great lives? Believing that some things just aren’t healable is anathema to most everyone, radical and not. We believe that with enough love and wonderful techniques and prayer, anything can transform. But what if some things can’t?"
  
  "It’s not about self-care—it’s about collective care. Collective care means shifting our organizations to be ones where people feel fine if they get sick, cry, have needs, start late because the bus broke down, move slower, ones where there’s food at meetings, people work from home—and these aren’t things we apologize for. It is the way we do the work, which centers disabled-femme-of-color ways of being in the world, where many of us have often worked from our sickbeds, our kid beds, or our too-crazy-to-go-out-today beds. Where we actually care for each other and don’t leave each other behind. Which is what we started with, right? As my friend and comrade queer yoga teacher Yashna Maya Padamsee, a 2010 HJPS co-organizer and writer, wrote in her often cited article “Communities of Care, Organizations for Liberation”: “If we let ourselves be caught up in the discussion of self-care we are missing the whole point of Healing Justice (HJ) work. Too often self-care in our organizational cultures gets translated to our individual responsibility to leave work early, go home—alone—and go take a bath, go to the gym, eat some food and go to sleep. So we do all of that ‘self-care’ to return to organizational cultures where we reproduce the systems we are trying to break.”
  
• 
  Laura

  I am grateful that the author wrote this book and that I had the opportunity to read it. Care Work is urgent, crucial, challenging, confronting, and so so needed. I was deeply personally affected by some of the chapters, feeling like personal experiences and feelings I've had were named in ways that I appreciate and will carry with me. I also feel like I've learned a lot, including about areas that I can do better, and will bring that learning into the work that I do -- I'm glad for those lessons, too. Highly, highly recommend.
  Content warnings: suicide, suicidal ideation, self-harm, substance abuse, emotional abuse, sexual abuse, sexual assault, rape, ableism, incest, child abuse, sexism, heterosexism, transphobia, xenophobia, racism, death, grief, body shaming, medical trauma
• 
  Sheri

  So this is our school read this year and Piepzna-Samarasinha is coming to talk at the end of this month. The book has been sitting on my to-read shelf since September and I picked it up a few days ago with a "must read over winter break mentality". And it was better than expected, in different ways.
  
  As a fairly academic minded person who likes structure and citations, I was at times annoyed with the meandering format of the essays. I also felt like a lot of it was repetitive. And yet, the beauty is that is the point. There are many ways to impart information and just because I have been taught to value a certain format does not mean that other formats are "lesser than" in any way. Piepzna-Samarasinha's writing is honest and vulnerable; it is repetitive and raw; it is exactly perfect in its imperfections.
  
  That said, I'm gonna leave the rest of this to her quotes:
  "A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met."
  
  "needed care meant being locked up, losing your human and civil rigths, and being subject to abuse."
  
  "accepting care means accepting queerphobia, transphobia, fatphobia or sexphobia from our care attendants."
  
  "the 'issue' isn't an individual problem that their buddy has--that beyond needing care, their friend is being impacted by the ableism of both the everyday world and much quuer and activist space."
  
  "our bodies don't need to be cured or fixed into normalcy to be valuable"
  
  "movements themselves could and should be spaces of healing, that care didn't have to be a sideline to 'the real work' but could be the work"
  
  "Mainstream ideas of 'healing' deeply believe in ableist ideas that you're either sick or well, fixed or broker, and that nobody would want to be in a disabled or sick or mad bodymind....but assumptions in both places abound that diable and sick folks are sad people longing to be 'normal', that cure is always the goal, and that disabled people are objects who have no knowledged of our bodies....Most sick and disabled people I know approach healing wanting specfic things--les pain, less anxiety, more flexibility--but not usually to become able-bodied."
  
  "Many of our traditional BIPOC forms of healing were outlawed by enslavement and settler colonialism, and then stolen by white people who take our healing traditions, apply certification programs that exclude many of us, and sell them for a profit."
  
  "Foundations have rarely ever given disabled people money to run our own shit."
  
  "What if it gets better and transforms more than you ever expected, but there are also times when it's still crazy, hurts so bad? And no one prepared you for a life narrative where maybe struggle and therapy and herbs and miracles healed the pain, but the pain didn't go all the way away."
  
  "We don't know how to let people be both gifted and imperfect."
  
  "in that moment of feeling the deep grief and sadness over the impact of oppression, killing myself has felt like one clear way I can have agency."
  
  "Many disabled folks I knew, including myself, were wracked with grief and pain at the spectacle of white, able-bodied family cheering on her death; in their lack of valuing her life, we saw the ways our own lives weren't seen as valuable or brave....Jerika was told she was brave to think about dying, not that fighting for the systemic supports that would let her live well would be a brave thing to do."
  
  "we're only loved when we're competent, together, and holding it down."
  
  "If the only place we and our gender are loved is on a pedestal, and one mistake throws us off the pedestal into a pit of hell...well, that 's not a recipe for anyting like love or liberation."
  
  "suicide was a weapon of the abuser and the colonizer, a bomb they plant in our bodies to try to kill us, and that it was political for me to fight to survive and live."
  
  "We work so much. We don't sleep. We don't stop. We have our own somatics, a way of being in our bodies, of toughness and sucking it up and making it happen. We do it because we have to, because we love it, because it's a way of saying fuck you to everyone who's ever sadi we're lazy and it's our fault we don't have money. And this can be a gift. And it can also kill us. And there's so much in here about care and sensitivity and being able to breathe being coded as luxuries for the wealthy."
  
  "Expectations run high that you are either a magic mommy who fixes everything perfectly and infallibly and never says no, or you are a shit failure bitch who deserves every bit of rage thrown at you."
  
  "I believed that if I proved myself to be indispensable, to be useful, I would not be thrown away, I would have a place, I would be useful and thus loved, or something like loved, because my inside parts were not loveable but my usefulness was."
  
  "Denial of abuse's omnipresence--the belief that sexual abuse must be a rarity, happening someplace else by some fundamentally terrible person who looks obviously scary, rather than many violations created by complex, charming, gifted people we know and love, happening right next door--is a big part of what allows childhood and adult sexual abuse to keep going."
  
  Overall it is worth the read.
• 
  Mary

  This book is a turning point for me, so challenging and affirming. Lots of things to think about as a care provider, an activist, a queer & trans person, and as someone with at times debilitating mental illnesses. Grateful for it.
• 
  Taylor Gibson

  Fantastic read. Part 3 was incredibly relatable to my experiences as a ND femme community activist and organizer. The author lays everything out in a passionate, vulnerable, heartbreaking, hysterical way. I audiobooked this and the author is the narrator. Very good pace, pleasant and engaging voice.
• 
  Miles Madonna

  “through loving disabled people, i get to love myself”
  
  i’m crying. this collection of essays was fantastic. really inspired me to become more active in my local disability justice scene. leah lakshmi piepzna-samarasinha has such a valuable, insightful perspective. warning that this book can be pretty heavy at times, but in a necessary way. loved this so much
• 
  Maria

  I love this book!
  
  It helped me understand more about disability justice, how intertwined it is with taking care of and allowing space for all of us, whether we consider ourselves disabled or not.
  
  Read it if you too spend more time in bed or unwell than society makes you feel ok about. And if you want to practice being less abelist!
• 
  Sivananthi T

  Insightful read on disability justice, and how we need to transform spaces, institutions, mindsets as well as policies and laws.
• 
  Taz S

  I think EVERYONE should read this book.
  Amazing read with thoughtful words from the wonderful Leah Lakshmi Piepzna-Samarasinha as always. It's a book that gave me so many feels, thoughts, hope, inspiration, connection and poignant insight into things that disabled/sick QTBIPOC queers have been living through and saying about community and many other dynamics for yearsssss. It's about time to actually listen, y'all.
  I have a copy and can lend it to you if the library is taking too long and we know eachother IRL. 🙌🙏💞
• 
  Shana Zucker

  4.5 stars rounded up. An incredibly important written work. Especially as a healthcare worker, delving into disability justice and depathologizing crip culture are incredibly important to me to becoming a more intersectional, trauma-informed care provider.
  
  One thing that frustrated me in this book was how (surprisingly) the author spoke about suicide as something people “commit,” which is outdated, pathologizing, criminalizing language.