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!DOWNLOAD E-PUB ♶ 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 this book is fine, it does a lot of important work for so touchy a subject you may at points wish the whole affair wasprogrammatically organized and edited such a mild gripe implicates the paradox of access perhaps easier to bring to the publisher but not the easiest to read this paradox frames the long contemporary impasse that the loosely affiliated genealogical formation of queer crip political life has gotten very comfortably nested in, whether individual need emancipates the group, how, pace martyred kanak political figure jean marie tjibaou, autonomy is interdependence, a tour de force of boundarywork you will wish that the collection of essays and talks in leah lakshmi piepzna samarasinha s care work began and was satisfied to stay with a femme queer crip of color intramural dialogue isn t this what we came for piepzna samarasinha considers this paradox as it only exacerbates consummates the fostering of an intramurality similar to feminist conceptual artist constantina zavitsanos collective indeterminacy briefly near the end of the book only to resume bargaining with ability incarnate, or some state like regulatory totalitarian entity, what feminist post colonial critic eva cherniavsky would characterize as something like the neoliberal state as corporate service provider, with much gusto against such relational asymmetries counter hegemonic demands for resource redistribution through the rubric of access is useful but what if, true to affect theorist lauren berlantian cruel optimism, the semblance of the queer femme crip of color s insovereign coherence might seem to hinge crucially upon these little talks with the oblivious glare of ability incarnate a relation where, pace philosopher and literary critic elaine scarry, each world making destroying instance of pain is comprised of both certainty and doubt what goes lacking in the interlocutor of ability incarnate is what piepzna samarasinha repeatedly shrieks for and it is kind of excruciating that the historical and political essence of act up is never simply sought what does it mean to read care work and think this one can t miss the nonresemblance between these moments of queer disabled rage, one groomed by the individualized treatment methodology the other coalesced and found formation and fought to bring into existence it would not be an entirely condescending presumptuous prescription for healing to suggest some modes of care might benefit us to get passed inter generationally down here, the project ability incarnate refuses every single request for again i m speaking less literally andphilosophically of act up as a counter ableist ethical project or project based affectsphere or directed responsive collective energy it s a tension between danger and domestication, the insatiable collective appetite for total access as aids spreads at rocketing levels through black bodies one wonders what it would take to compel an act up like urgency back into queer fashion but despite these reasonable if i don t say so myself observations disability is strategically dreamed as an out for these kinds of accountability while demanding accountability from everybody else the ethical paradox of access briefly considered near care work s end but never fully given its due. 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 beat 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 wasI 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 getscomplicated is when those desires bleed into the ableist model of cure that s the only model most of us have for havingease 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 ifsurvivors 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 hadspace 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, evendangerous, 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. 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 withoutresearch, 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 andable Perhaps I would have created different networks and would haveto 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 isout 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. I went into this book with zero expectations and came away so delighted I learned so much about disability justice Piepzna Samarsinha s writing is heartfelt, concise, and inviting I can t wait to dive into their works In the vein of her other work, Leah Lakshmi Piepzna Samarasinha s Care Work is incredibly readable and accessible, full of beautifully written stories from her on the front lines experiences with Disability Justice, Mad movement, care collectives, and muchThis book is about pain and trauma and searching for better ways of being, moving, and relating in the world, and it s also full of hope and wild imagination Leah is careful to note that these are not her dreams alone, but she collaborates with many especially queer femme of colour crip, disabled, and Mad people to manifest these visions of a Disability Justice centered world And she gives so many concrete, actionable examples of how each of us can carry these visions into our everyday lives It ll take you deeper if you re already familiar with DJ Mad movement, and it s also a great primer if you re completely new. EVERYONE PLZ READ THIS 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. 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. A gift, as Leah does The kind of book I want everyone to read, but want especially to make sure the right people receive it and for it to not ever be misused because it really is such a gift Must reads really all of the book, it holds together so beautifully and even scaffolds as a collection Care Webs Experiments in Creating Collective Access 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 This is for all the times I ve relaxed into the miracle of being cared for well, that changed my understanding of what was possible, and every time I ve succeeded and failed at caring well 37 The community is not a magic utopia, just like our families weren t, and we don t all just magically love each other, or even like each other, let alone agree on every political issue I think about people I know who are mean or angry or bitter or hard to like and disabled and how that confluence is not a surprise or an accident, because many of us are indeed in a shitty mood, mean, or bitter from withstanding decades of ableism and the isolation that it brings I think about the people I know who I don t want to die lying in their own piss, but I don t want to be the one who changes their diaper either I think about the things I still can t ask friends to help me with cleaning the house when it s incredibly nasty after I ve been in pain for weeks, dealing with shit or blood I think about my friend s statement that she shouldn t have to rely on being liked or loved to get care 64 How about valuing a system of people contributing as they can, not necessarily equally or always 66 We make it, and we don t, and we make it sideways 166 But What if it gets better and transformsthan you ever expected, but there are also times when it s still crazy, hurts so bad Maybe hurts worse because it did get better, it got so much better, and also, the struggle did not stop 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 Maybe, as you survived and succeeded, it just gotcomplex 175 How do we claim this body broken beautiful as not a liability but a gift 184 I ve been praised for it all my life, this thing now being called femme emotional labor that is also crip, crazy, and survivor And I have internalized that this is my job and my worth, the thing I am skilled at doing, the thing that was my value when I was not seen as pretty or worthy of protection Also, I think if I or you say what needs to be said just the right way, the world will be saved and the revolution will come and I won t die 215 You are renewable and also a limited resource 224I m interested in creating the place where the body can remember itself, even though it hurts to do it Where feeling better is part of it, but it s not the goal Struggling better is the goal Susan Raffo 225 I was auditioning a new therapist 225 love this language Stacey We do not have a way to talk about becoming disabled orimpairedLeah to view coming into disability identity as a birth, not a death, which is how the transition s are seen by ableist culture 240 241 Stacey Milbern on the notion of crip duolaing Elderhood is not a state that just happens Disabled QTBIPOC elderhood is dependent on systems that support it being there like affordable rent, neighborhoods that don t gentrify, social spaces that are accessible, Section 8 or social housing that exists and doesn t have a ten year waiting list, guaranteed annual income, accessible work 245 Being closer to the dead than the living is another kind of crip relationship 249