Welcome to the Disability Justice Book Club Month 3
Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice
Led by Dr. Jennifer Gagnon (and her service dog Ziggy)
Supported by the EDI Scholars-in-Residence Program and the Peña Fund
Land Acknowledgment
We acknowledge that UBC’s two main campuses are situated within the ancestral and unceded territory of the xʷməθkʷəy̓əm (Musqueam) people and in the traditional, ancestral, unceded territory of the Syilx Okanagan Nation and their peoples
If this is your first time attending the book club
If you’re joining the Disability Justice Book Club for the first time this month – welcome! We are so excited to have you with us! Please review the Month 1 Discussion Guide which contains important information on the structure of the book club, the two different cohorts: 1) Disabled and Proud and 2) Disability Allies, and ways that we are incorporating Disability Justice into how the book club works. The Month 1 Discussion Guide is available online here.
Accessing the Text:
We will be reading Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice. The book is available freely and for purchase in a variety of formats. However, most free access is in ebook format through either UBC library or your public library, (the text is unfortunately no longer available in Open Access). If you are joining from beyond UBC, your institutional or public library are likely the simplest to access. As always, if you encounter any challenges accessing the text, or require a different format for accessibility, feel free to reach out directly to Allan Cho (allan.cho@ubc.ca) or Jennifer Gagnon (jennifer.gagnon@ubc.ca) for support.
E-book format
Paperback format
- Available at UBC Libraries (Call number and location: HV1568 .P53 2018, RBSC ASRS)
- Available at Vancouver Public Library here
- Available from the publisher here for $23.95
Audio format
- Available at Vancouver Public Library here
- Available from Audible here with a free trial
- Available from Spotify here with a premium subscription
DAISY format
- Available at Vancouver Public Library here
Confidentiality
A core practice of Disability Justice is confidentiality. Accessibility, safety, and inclusion all require that we are mindful to not disclose confidential information about the lived experiences of others. Many disabled folks have heightened concerns about confidentiality because of their experiences with ableism, discrimination, and marginalization. While some of us might feel comfortable sharing our experiences with disability and ableism, no one is required or expected to disclose. Folks may also not be “out” about their relationship to disability in all contexts and places at UBC and beyond. To further support control over disclosure of our identities and experiences with disability, we have created two cohorts for the Disability Justice book club 1) the Disabled and Proud cohort for folks who self-identify as disabled and who are interested in discussing Disability Justice with other self-identified disabled folks, and 2) the Disability Allies cohort for folks who do not presently identify as disabled or who would prefer not to disclose their relationship to disability. We always assume the presence of disability and access needs in all our meeting spaces. To support confidentiality and safety in these spaces, please treat the experiences of individuals as confidential and do not disclose anyone’s lived experiences without their enthusiastic consent. This Book Club is an opportunity to grow our knowledge and understanding of Disability Justice, and potentially “read yourself in” to Disabled community or explore how disability and ableism are already present in your experiences.
Discussion Guide
Page numbers refer to the ebook format available through VPL
- “I started writing from bed. I wrote in old sleep pants, lying on a heating pad, during the hours I spent in my big sick-and-disabled femme of color bed cave. I wasn’t alone in this. I did so alongside many other sick and disabled writers making culture.” “Preface” p. 11
“It [Disability Justice] means we are not left behind; we are beloved, kindred, needed.” “Preface,” p. 15
“Inclusion without power or leadership is tokenism.” “Ch. 7 Cripping the Apocalypse,” p. 82
- What does writing/working from bed mean or look like to you? How are advocacy and activism often inaccessible? How does Disability Justice shift activism away from the streets and into our beds?
2. “This is an essay about care –about the ways sick and disabled people attempt to get the care and support we need, on our own terms, with autonomy and dignity… It’s about our attempts to get what we need to love and live, interdependently, in the world and in our homes, without primarily relying on the state or, often, our biological families…. This is about some of the ways we are attempting to dream ways to access care deeply, in a way where we are in control, joyful, building community, loved, giving, and receiving, that doesn’t burn anyone out or abuse or underpay anyone in the process.” “Ch. 1 Care Webs, “ p. 29-30
“People’s fear of accessing care didn’t come out of nowhere. It came out of generations and centuries where needed care meant being locked up, losing your human and civil rights, and being subject to abuse.” “Ch. 1 Care Webs, “ p. 25
- How does disability justice change and complicate our idea of care, and of giving, receiving, asking, managing, refusing, and challenging care relationships? What is at stake in seeing care as work, labour, and love?
- “The care webs I write about here break from the model of paid attendant care as the only way to access disability support. Resisting the model of charity and gratitude, they are controlled by the needs and desires of the disabled people running them. Some of them rely on a mix of abled and disabled people to help; some of them are experiments in ‘crip-made access’ – access made by and for disabled people only, turning on its head the model that disabled people can only passively receive care, not give it or determine what kind of care we want.” “Ch. 1 Care Webs: Experiments in Creating Collective Access,” p. 26
- What is a care web? How would you map your own care web? What are some challenges that can arise in building a care web?
- “Many of us who are disabled are not particularly likable or popular in general or amid the abled. Ableism means that we — with our panic attacks, our trauma, our triggers, our nagging need for fat seating or wheelchair access, our crankiness at inaccessibility, again, our staying home — are seen as pains in the ass, not particularly cool or sexy or interesting…
And: I am still arguing for the radical notion that we deserve to be loved. As we are. As is.” “Ch. 3 Making Space Accessible Is an Act of Love for Our Communities,” p. 49
“Love as an action verb. Love in full inclusion, in centrality, in not being forgotten. Being loved for our disabilities, our weirdness, not despite them.” “Ch. 3 Making Space Accessible Is an Act of Love for Our Communities,” p. 49
- How can love promote inclusion not only for those that ableism deems “likeable” but also for those who ableism perceives as “unlikeable” or “difficult to love?”
- “There are official statistics now that show that at least half of the racialized people murdered by law enforcement are also physically or mentally disabled, Deaf, and/or autistic.
There are both protests where we name racism and ableism, and protests where the role ableism plays in our people’s deaths gets forgotten. At this moment in time, I remember that we are the first to remember theses connections, know why our people were murdered, and fight like hell to end this world that wants us dead.” “Ch. 4 Toronto Crip City,” p. 56
- How do we stop ableism from killing, especially those at the intersections of other forms of oppression? How can we de-centre whiteness, sexism, settler colonialism, heterosexuality, and other forms of oppression and privilege by rethinking our relationships to and with care?
- “It’s not about self-care—it’s about collective care.” “Ch. 5 Sick and Crazy Healer” p. 69
“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.” “Ch. 5 Sick and Crazy Healer” p. 69
“Most folks I know come to activist spaces longing to heal, but our movements are often filled with more ableism and burnout than they are with healing. We work and work and work from a place of crisis.” “Ch. 5 Sick and Crazy Healer” p. 62
- Why are the narratives of “wellness” “self-care” and “cure” not disability justice? How does mutual care resist the narrative of self-care? How do we resist without burning out ourselves and those struggling with us?
- “If care labour is, well, labour, and we participate in an emotional economy all the time, what would a just care labour economy look and feel like?” “Ch. 8 A Modest Proposal for a Fair Trade Emotional Labour Economy” p. 90
- In her answer, Leah Lakshmi Piepzna-Samarsinha emphasizes consent, drawing on disabled knowledge, reciprocity, rejecting sexism, time off, and a culture of appreciation. How would you answer her question of what a just Fair trade Emotional Labour Economy would look like?
- “For years awaiting this apocalypse, I have worried that as sick and disabled people, we will be the ones abandoned when our cities flood. But I am dreaming the biggest disabled dream of my life—dreaming not just of a revolutionary movement in which we are not abandoned but of a movement in which we lead the way. With all of our crazy, adaptive-deviced, loving kinship and commitment to each other, we will leave no one behind as we roll, limp, stim, sign, and move in a million ways towards cocreating the decolonial living future. I am dreaming like my life depends on it. Because it does.” “Ch. 7 Cripping the Apocalypse” p. 87
- How do we continue to do (and receive) care work in dark times? How do we continue to dream Disability Justice into being?
- “Stacey Millbern: “How have you found crip ancestors? ….
Leah Lakshmi Piepzna-Saarsinha: I stumbled upon them. I dug them up. I fought to find them. I dreamed them. Others shared them. I remembered them.” “Ch. 19: Crip Lineages, Crip Futures” p. 161
- Who are your crip ancestors? How does finding and honoring your Crip ancestors support you in dreaming crip futures?
Thank you for gathering with us today to discuss Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice