Care Work by Leah Lakshmi Piepzna-Samarasinha

This book of accessible and passionately-argued essays about chronic illness life and community is essential reading
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The cover of Care Work by Leah Lakshmi Piepzna-Samarasinha

Able-bodied people are shameless about really not getting it that disabled people could know things the abled don’t. That we have our own cultures and histories and skills. That there might be something they could learn from us. [Chapter 2, ‘Crip Emotional Intelligence’]

Care Work: Dreaming Disability Justice is a book of beautiful, passionately-argued essays from Leah Lakshmi Piepzna-Samarasinha, a chronically ill, disabled, queer woman of colour who has been an activist, performer and writer for many years in Canada and the USA.

Written very accessibly, these essays cover a wide range of topics, with a focus on the ways that disabled people, particularly those also marginalised due to race, gender, sexuality and class, work to help each other survive through ‘care webs’, when the state and non-disabled people will not provide care, or when the existing systems do more to harm than help. This book is full of both eloquent personal reflection on what it’s like to live as a chronically ill person of colour, and hard-won practical experience and wisdom about community organising.

Essential history, politics and concepts 

I picked this book up after I stumbled across the author’s idea of care webs online, while searching for ways to organise within my own chronic illness community. These essays introduced me to some essential history, politics and concepts around community organising. One of the most important elements for me was the concept of Disability Justice –where it came from, what it means, and what it is not.

While always accessible, these essays convey some of the very complex issues at stake in disabled communities, particularly ones where people are marginalised in many different ways. That emotional labour holds communities together, but that sexist dynamics mean that that labour is often extracted for nothing and not taken seriously as ‘real activism’. That the care provided by the state needs to be better, but that state institutions may not be the safest way for people to be cared for anyway. That accessing the kind of informal care available within a community is often dependent upon a person’s social capital and ability to communicate, which will leave many out. Even the fact that having a collection of essays published by a mainstream publisher sets the author out as some kind of disability justice ‘expert’ when she is just one of a large group of activists who have been working incredibly hard for decades.

As the author puts it: “This book is… emphatically not the product of a single smart and special person’s brain… These ideas were crafted by collective disabled genius, science and labor. I am not the one right kind of cripple, the kind that is convenient enough to nod and ignore all the rest. I am all the rest.” [Thanks and Acknowledgements]

Crip sex, Prince and chronic pain, and wild disability justice dreams

Sick and disabled and neurodivergent folks aren’t supposed to dream, especially if we are queer and Black or brown – we’re just supposed to be grateful the ‘normals’ let us live. But I am the product of some wild disabled Black and brown queer revolutionary dreaming… [Chapter 7, ‘Cripping The Apocalypse’]

These essays cover so much ground that there are dozens of different reasons you might want to pick it up – other topics covered include crip sex, femme suicide, what ‘fair trade emotional labour’ might look like, and Prince and chronic pain. The short essay format makes it easy to digest when your brain isn’t at its best, and if you have problems with attention, there’s so much variety it’s likely to keep you focused. The essay ‘Crip Emotional Intelligence’, for example, which lists all the specialised ways disabled people show up for each other, is a concise five pages, and every single line had me nodding my head and/or tearing up. One of the greatest things I got from every page of this book was hope, that wild dreams of a fairer world can come true, though the road is hard and it may look messier in action than the non-disabled would want.

My life is bookended by library books, vibrator, and baths. Something more than simple self-care, and something other than the life of a lazy, privileged girl. It is a crip life, a chronically ill life. It is a life of dreamtime. [Chapter 13, ‘So Much Time Spent In Bed’]

This book has been an education and a comfort, has given me ideas and perspectives on community organising that I had either not considered before or had been unable to articulate, and will continue to be a bedside companion for me in my own ‘life of dreamtime’.


Buy Care Work: Dreaming Disability Justice (Arsenal Pulp Press, 2018) by Leah Lakshmi Piepzna-Samarasinha from Bookshop UK here. This is an affiliate link so Spooniehacker will receive a small donation if you buy this way. We pay our contributors and make no profit, so every little helps!