Leah Lakshmi Piepzna-Samarasinha is a queer disabled femme writer, organiser, performance artist and educator of Burgher/Tamil Sri Lankan and Irish/Roma ascent. Care Work: Dreaming Disability Justice is their fifth book of six, a collection of personal and political essays that examines disability justice and interdependence from a queer POC (person of colour) perspective. Reviewed by Cyprus-based writer, Eric Karoulla.
Note: Leah uses she/her and they/them pronouns interchangeably.
‘We begin by listening.’
– Leah Lakshmi Piepzna-Samarasinha, Care Work (2018)
The fact that Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice was a finalist for the Publishing Triangle Award is not the only reason you’d want to read it. (Or, indeed, the two books they have published in the year since Care Work’s release.) Like much of Leah’s writing, performing and editing, Care Work comes from a place of community and collective dreaming. As she writes: ‘When I think about access, I think about love’.
Care Work was created in the ‘chronically ill, Crazy queer femme of colour’ dreamspace of Leah’s bed (also known as their office). Disability and illness, caring for and between disabled people, disability justice, love and dreaming are the main focus of this book – but far from the only things it encompasses.
Beginning with a definition of disability justice and a personal history of that movement in Toronto and San Francisco’s Bay Area (with enthusiastic high fives to performance collective Sins Invalid and concepts like Mad Pride), Care Work imagines a collective future. Yet these essays aren’t a dreamer’s incoherent, unrealistic ramblings. Leah fills them with over 25 years’ experience of queer, POC and disability community organising. Alongside practical advice such as ‘Chronically Ill Touring Artist Pro Tips’, she goes on to share funny and embarrassing moments during crip sex; the smothering Catch-22 of ‘triumphant’ abuse survivor narratives and noble ‘supercrip’ stereotypes; and a love letter to sick/disabled, Crazy, queer femmes of colour. This book talks to the future and to the ancestors, highlighting how none of us would be here without them.
Strongly reminiscent of Audre Lorde’s tone in Cancer Journals, Leah’s intimate mix of past stories and future dreams confronts the reader with difficult and often unspoken questions. How do we create care webs that are fair to all parties involved, without people being afraid to request and receive assistance? Can activist movements be healing? Can we fight suicidality in our communities without pressuring people to ‘promise to live’, but instead by creating a less hostile environment so they’re supported in ways that make them truly want to stay? Can we help people survive once they get through the landmine terrains of youth? How can survivors grow old well? How do we make the struggle accessible and sustainable, so that we leave no body behind?
Describing Care Work solely as a survivor memoir undermines the rest of the text and its purpose. In many ways, it is a survivor memoir, but it’s also much more complex than ‘memoir’ seems to allow. Care Work is a fierce disability and healing dream/love letter/How-To guide that encompasses many issues that surround and intersect with disability justice. It’s your coolest, sick/disabled, crazy, queer femme of colour elder telling you to get your head out of your ass and listen (or read the captions). Listen to what neurodivergent, ill, disabled and deaf QTBIPOC (queer, trans, Black, Indigenous, people of colour) need – not just as an after-thought for a one-off event, but in order to live longer and better. Leah’s biographical and emotional elements aren’t sacrificed for the sake of discussions around politics, but rather interwoven with them, rendering Care Work a much-needed starting point for difficult interpersonal and community discussions. It makes a good companion book to Sins Invalid’s Skin, Tooth, and Bone: A Disability Justice Primer.
Disability and Intersectionality Summit 2018: Leah Lakshmi Piepzna-Samarasinha “Care Work: Dreaming Disability Justice?”
While all this is important in an abstract, general sense, these ideas and needs were not created in a vacuum – and Leah’s writing reflects this. With the ableist policies of Donald Trump severely affecting ill and disabled people in the U.S., ongoing racist oppression by the Canadian state of Indigenous peoples’ health and land rights, suicides linked to slashed benefits in the UK, and the violent racism and ableism that have bubbled to the surface with the emergence of the coronavirus Covid-19, Care Work becomes a source of hope, invaluable knowledge, and great company.
Care Work is available from Arsenal Pulp Press or your local indie bookshop.
Eric Karoulla bio audio:
Sandra Alland is guest editor at DAO from 25th March to 26th April. Check out all San’s commissioned pieces on their Project page. Audio versions of all pieces can be found on San’s dedicated SoundCloud channel.