Care Work: Dreaming Disability Justice
A study guide of Leah Lakshmi Piepzna-Samarasinha’s 2018 book ‘Care Work: Dreaming Disability Justice.’
Summary, part 2
Making Disability Justice Happen
Disability justice and intersectionality
When thinking about disabilities, one needs to center the different aspects of intersectional identities (e.g., how racism, poverty, and ableism overlap). For example, many Black and brown people who clean houses for a living have developed chemical sensitivities from exposure to cleaning products, so now there is a need to reframe how chemical and fragrance sensitivities are viewed. They may suffer from asthma or cancer because they disproportionately live in areas exposed to toxic waste and pollutants as a result of systemic racism and socio-economic factors.
Definition of Femme
Femme - A person who has one of a million kinds of queer femme or feminine genders and is part of a multiverse of femme-gendered people. Often complicated remixes that break away from white, able-bodied, upper-middle class, cis feminity, remixing it to harken to fat or working class or Black or brown or trans or nonbinary or disabled or sex worker or other genders of femme to grant strength, vulnerability, and power to the person embodying them (p. 136).
An example of disability intersecting with other identities, Piepzna-Samarasinha––a queer, disabled, femme-of-color––writes about her experience writing a survivor narrative titled Dirty River. The narrative discusses the incestual abuse she faced in tandem with her immigrant and disability stories, which are connected. It was difficult for Piepzna-Samarasinha to get a book deal because of the subject matter (survival and disabilities) and her identity as a queer person of color femme writer. Eventually, the book was picked up by a traditional publisher.
Piepzna-Samarasinha, reflecting on that experience, says:
“those feminist and queer and POC small presses of the 1970s and ‘80s were created in basements. Kitchen Table Press was literally created at a kitchen table. We always create the technology, from lipstick to Tumblr, we need to survive. And that includes publishing out writing, on our own terms, for the people who want and need to read it” (p. 172).
Disability justice is an able-bodied problem, too
Able-bodied people need to attack ableism in everyday life because their able body does not last forever. We must reinforce the idea that making the world accessible for disabled people makes the world more accessible for everyone.
That said, disabled people must be front and center when addressing disability justice. If disabled people are included in discussions but have no power or leadership, that is tokenism (i.e., the practice of making only a perfunctory or symbolic effort to do a particular thing––definition from Google). We see this when “abled people get ASL and ramps and fragrance-free lotion but haven’t built relationships with any disabled people” (p. 127). This performative inclusion is reminiscent of the charity model.
What disabled people bring to the table
People who are disabled have to think innovatively when making sure their needs are met. The fact that thinking innovatively is something people who are disabled have to do, but not something able-bodied people have to do, should not be the norm.
Disabled people should not have to rely on the people in their life who love them to be able to use the bathroom and things of that nature, instead, care must be provided on a community- and system-level.
Additionally, people who are disabled can have what Piepzna-Samarasinha calls crip skills, a term that describes “the skills that disabled folks have” (p. 69). Naming crips skills as crip skills challenges the “deficiency model by which most people view disability [that] only sees disabled people as a lack, a defect, damaged good, in need of cure” (p. 69). Some examples of crip emotional intelligence are:
Not taking it personally when someone may be rude, short, or fumbling with words because there is an acknowledgment of what that person may be going through;
Never assuming anything and always asking to ensure the respect of what people may need for their specific body and comforts; and
Understanding that accessing resources (e.g., food stamps) is not always simple
Pitfalls to watch out for
Spaces that are only for disabled individuals can create a space of healing through shared life experience, but it may make accessibility difficult. Space can expand by training abled-bodied allies to give care and paying people (potentially in art) for their energy. These spaces allow for people with disabilities to learn new information about cross-disabilities or disabilities they may not hold themselves. When creating a care web there are questions you should keep in mind. For instance, what is the goal of your care web? Who needs care and what kind of care? What are the best practices that allow people receiving care to receive care well?