Care Work: Dreaming Disability Justice
A study guide of Leah Lakshmi Piepzna-Samarasinha’s 2018 book ‘Care Work: Dreaming Disability Justice.’
Summary, part 1
Defining Disability Justice & Care Work
Disability justice centers queer, trans, Black, Indigenous, Person/People of Color (QTBIPOC) and what they need, how they live, and how they organize justice for themselves. Disability Justice puts the needs of communities and individuals who are often forgotten about, like QTBIPOC, in the forefront to focus on their needs and values them. This work destroys the structure that keeps ableism in tact.
Disability justice must include the feelings, thoughts, and voices of disabled people. People, organizations, and policy-makers are discussing ‘disability justice’ at length while leaving out its necessary and original context. Long marches and conferences continuously asking people to move around is not "justice" -- that is ableism. However, not everyone recognizes it as such.
Historical Context
Historically, people who were disabled were killed under colonialism and capitalism, and this has led to lasting shame within some marginalized communities. Now, the lives of the disabled people in those communities should be remembered.
Piepzna-Samarasinha provides historical context of the treatment of disabilities in North America. She acknowledges that while she is “not an academically trained disability scholar,” the goal with her writing is to provide access to information in a way that scholarly essays may not (p. 37).
After the British colonized the United States, disabled or sick bodies––especially those of Black, Indigenous, Person/People of Color (BIPOC)––were sold, killed, or left to die because they were not bringing in money. Historically, the disabled were killed under colonialism and capitalism, and this has led to lasting shame within some marginalized communities.
Today, much of disability justice is centered on caregiving (i.e., the activity or profession of regularly looking after a child or a sick, elderly, or disabled person––definition from Google). Not all disabilities then and now are viewed as real or valid disabilities, and some disabled individuals do not want a caregiver because they do not want to be viewed as incompetent. Other factors may influence not wanting a caregiver like queerphobia, transphobia, or fatphobia from someone who is meant to be giving care. Other individuals are not seen as disabled enough to receive disability benefits, while others do not want to be seen as disabled because they fear losing rights to things like marriage or housing.
Creating Collective Access through Care Webs
Piepzna-Samarasinha encourages the use of care webs, which are groups of individuals (who may be disabled, able-bodied/not disabled, or a mixture) who work together to provide care and access to resources for each other. Creating care webs shifts the idea of access and care of all kinds (disability, child, economic) from collective to collective while working through the raced, classed, gendered aspects of access and care.
Piepzna-Samarasinha discusses how predominantly sick and disabled Black and brown queer people have created ways for sick and disabled people to receive support and care through their autonomy without relying on the state or their biological families.
She also spotlights care webs from the past that may not have been viewed as disabled care like the STAR House started by Marsha P. Johnson and Sylvia Rivera. The STAR house created a safe space for trans people of color while also allowing shared access to gender-affirming supplies.
Piepzna-Samarasinha has lived experiences in care webs and helping people through different crises. She is impressed by how the community can come together to give care when the state/government may not be giving ‘good’ care or providing people with the resources they need. State-provided care can be inaccessible because of a lack of internet, shame, poor advertisement, ineligibility, or a complicated registration process. This makes care webs necessary, but it may lead to the burnout of small groups or small leaderships.
Additional Information
The Street Transvestite Action Revolutionaries (STAR) House stood for the was a gay, gender non-conforming and transgender street activist organization founded in 1970 by Sylvia Rivera and Marsha P. Johnson, subculturally-famous New York City drag queens of color. (Google)
Learn more here