Image: The cover of the book is a white background. Across the top in blue-violent, capital letters is the author's name Leah Lakshmi Piepzna-Samarasinha. Below that in large mustard green capital letters is "care work" one word on top of the other. Between the two words, in the same letters as the authors name, it says "dreaming disability justice." Behind the title is an illustration taking up the lower half of the cover. It appears to be a brown-skinned woman with her left arm and left leg around a mass of white branches and perhaps mushrooms. I am sorry that I cannot tell exactly what she is hugging. Only her arm and her leg are visible behind the bramble of plants.
I wanted to put my only negative critique at the beginning of my review for people who skim because it involves one small section of the book that contains dangerous advice. There is a section in which the author shares her tips for touring, many of which are safe and helpful. While she does remark that these things will not work for every body, she does not explain further in ways that are critical for disabled and/or sick people reading.
One thing she recommends is, for chronic pain, to take 800mg of ibuprofen every 4 hours. She doesn't say for how long or when to stop. One day of doing this puts an adult well over the maximum safer prescription dose. I say 'safer" not safe because long term NSAID use can still be dangerous at "safe" levels. Overdosing ibuprofen (and other NSAIDs) can commonly cause deadly and debilitating illnesses such as stomach bleeding and kidney disease. I learned the hard way by developing both likely from too many NSAIDs in my youth because of chronic pain. My stomach has since mostly healed but I have to be regularly monitored by my nephrologist forever. Now, if that's your chosen risk level, that's totally ok for you. But, if you are going to recommend the practice to others, they need to also be informed of the risk.
Another thing she recommends is activated charcoal. It is true that activated charcoal can help with digestive issues and other things. It is also true that they give activated charcoal for overdoses and poisonings because it absorbs drugs and poison. If you are on meds, activated charcoal will absorb your meds, reducing or eliminating their concentration in your system and thus their effectiveness. As a person on 20 medications, I looked into activated charcoal at one point and luckily was reminded of being given it in the hospital in the past. This part is not explained in the recommendation, so if a person on medication- particularly the kind of medication you die without- follows this advice without more research, they could be injured or die.
So, please be careful with and research things before trying them. If you are not able to do the research, perhaps ask someone you trust to do it or your doctors if you have a good relationship with them.
Now that that is out of the way, let me move on to saying what a beautiful and important book Leah Lakshmi Piepzna-Samarasinha's "Care Work: Dreaming Disability Justice" is. I am not a big poetry person. I might say I don't often feel like I "get" poetry. Maybe I lack creativity or education. That said, I knew about Piepzna-Samarasinha from "The Revolution Starts at Home" and her general disability justice work. Every time a poem of hers came across my feed, I found myself enchanted. I promised myself that one day I would read a book of her poetry- a promise I have yet to fulfill. But, when I saw "Care Work" come out, it seemed like an excellent place to start. I went ahead and picked up her memoir "Dirty River: A Queer Femme of Color Dreaming Her Way Home" as well which I hope to read soon.
This book challenged me in ways I expected and those I did not. I don't want to make this review all about me, but I struggle to express the immense affect this book had on me without getting personal. I have had multiple chronic illnesses and disabilities since I was very young, but only recently began identifying with disability when they progressed badly enough that I had to stop working, most activism, and lose most of my social life through losing the ability to do many things I loved. I initially felt sad and lonely reading this book. I felt sad about all of the times I failed to implement or educate myself about disability justice in my activist days. I felt and feel sad that the kind of care networks Piepzna-Samarasinha discusses in this book seem so out of reach. I felt sad that I am not quite there yet as far as feeling worthy and empowered around my health and disability. I really want to be there.
The challenges came in realizing how much internalized ableism I have. They came in realizing how many times I failed to provide proper access and care, how many times I don't realize I failed, and how many times I have felt embarrassed, ashamed, and unworthy of accessing care. It challenged me to think about my masculinity (which I try hard to manifest as a caring and sensitive kind) with how my masculinity and that of others has manifested in failing to provide care and access. I initially tightened up a little with discussions around masculinity as the way I move through the world and especially medical settings has been a struggle (to keep it short, I've been asked to undress far too often in front of people and I was once getting a painful EMG of a nerve in my neck while two doctors stood over me calling me he and she competitively in front of a room full of med students- a common occurrence.) I have also often found myself a caretaker in my partnerships. Piepzna-Samarasinha did nothing to inflame this. In fact, she went out of her way to say she knows about many masculine people providing care and caring. She discussed ways in which feminine abled people have messed up. They were 100% my feelings to work through.
I am grateful for the look into myself and into my life. Real talk, it was my dad who abruptly and carelessly changed the subject without asking if I was ok when I told him I had cancer, it is my male roommate who I have to passively ask 10x over a period of weeks to carry something heavy upstairs for me, it was a male doctor who once told me in the hospital, "You need to suffer," it was a male psychiatrist who yelled at and insulted me as a teenager in an assessment "to see how long it would take me to break," it was multiple male doctors who told my mom I was malingering before I ended up hospitalized for multiple days with a 105+ degree fever followed by a botched spinal tap and missing months of school, it has been masculine people including trans ones and myself who have not been there, it was my single mom who sat with me in hospital beds as a child and youth, it was she and my femme and feminine friends who opened me up to accepting help when I was the sickest in adulthood, it was trans guys who identified as fem/feminine/not masculine who provided support, and so on and so on. The discussions around gender and masculinity in this are real and on point. So, if you're like me, sit with that discomfort and you will learn many things. The discussions of masculinity, femme-phobia, and care work in this are wonderfully nuanced and informative. If your knee jerks, that's on you.
I had no resistance to her discussions of race and whiteness in the book. One of the first things I noticed when I began delving into disability literature was how overwhelmingly white it all was. I am not saying this for ally cookies or whatever so please don't offer. I am trying to say that it was apparent even as a white person how limited the discourse and activism ends up being when you only have a minority of the world population having the most highlighted contributions. It was excellent reading Piepzna-Samarasinha's words and point of view as well as racking up new sources to check out via her impeccably well done citations and resources. I adore what many white disabled people contribute as well (hello, Eli Clare, you changed my life.) They are just one small piece of a very large puzzle.
Another thing that Piepzna-Samarasinha does well is catalogue Queer and/or POC disabled history in really informative ways. She discusses the lack of "elders" in movements who can tell these and other stories. Often the exclusion is due to lack of disability accessibility. All of us who do not die abruptly will become disabled eventually. She discusses the importance of having movements larger than a rotating door of 20-something middle class abled people. I wish this was something I had educated myself on better when I was younger and more able. Perhaps I would have created different networks and would have more to draw on now.
As you can see, this book made me think about myself and my life a lot. I don't know if approaching this review this way was me taking up too much space. But, I will say that though this book brought up a lot of feelings, it was not all bad. Piepzna-Samarasinha gave me hope that there is more out there. She describes beautifully care networks, friendships, other relationships, event set ups, activism, etc that can include sick and disabled people of all kinds. She describes them as real, possible, and already happening. She describes things I have longed for and things I never even thought of.
This book brings something huge to the table in terms of disability justice and discourse around disability in general. Reading this book opened up a whole other dimension for me. I can't recommend it enough to both newbies to the struggle and veterans. I think everyone can gain something from this book.
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