Top Quotes: “Care Work: Dreaming Disability Justice” — Leah Lakshmi Piepzna-Samarasinha
“There have been a million ways sick and disabled people have accessed the care we need over the centuries, and I don’t have time to go over them. A light once-over will say that in many precolonial contact communities, there existed ways of being disabled that did not mean stigma, shame, exile, or death. Disabled Cherokee scholar Qwo-Li Driskill has remarked that in precontact Cherokee, there are many words for people with different kinds of bodies, illnesses, and what would be seen as impairments; none of those words are negative or view those sick or disabled people as defective or not as good as normatively bodied people.
With the arrival of white settler colonialism, things changed, and not in a good way. For many sick and disabled Black, Indigenous, and brown people under transatlantic enslavement, colonial invasion, and forced labor, there was no such thing as state-funded care. Instead, if we were too sick or disabled to work, we were often killed, sold, or left to die, because we were not making factory or plantation owners money.”
“We were locked up in institutions or hospitals “for our own good.” The Ugly Laws, on the books in the US from the mid-1700s to the 1970s, stated that many disabled people were “too ugly to be in public and legally prevented disabled people from being able to take up space in public.” The Ugly Laws were interwoven with a mass creation in the 1800s and onward of hospitals, “homes,” “sanitoriums, and “charitable institutions” where it was the norm for disabled, sick, mad, and Deaf people to be sequestered from able-bodied “normal society.”
These institutions overlapped with other prison/carceral systems, like residential schools, where Indigenous children were stolen, abused, and stripped of their language and culture, and prisons where Black, brown, poor, criminalized, trans, queer, and sex working people were locked up for profit. 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. The specter of “the home” and lockup still haunts everyone when we consider asking for or needing care.”
“Some/many of us live in the “cliffhangers,” as Patty Berne puts it, of the disability rights movement — the spaces where a white-dominated, single-issue, civil rights approach that depends on the ability to use lawsuits to achieve disability liberation leaves many of us behind. Some of us are disabled folks who are able to access care attendants to help us live that are paid for by the state, Department of Health, or Social Services. Some of us are disabled people whose disability the state never approves of — so it’s not “real.”
Some of us fear that letting anyone in to care for us will mean we are declared incompetent and lose our civil rights, so we guard the houses where we can be sick. Some of us know that accepting care means accepting queerphobia, transphobia, fatphobia or sexphobia from our care attendants. Some of us are in the in-between of needing some
care but not fitting into the state model of either Total and Permanent Disability or fit and ready to work — so we can’t access the services that are there. Many of us are familiar with being genuinely sick as hell and needing some help but failing the official crip exams because we can still cook, shop, and work, only slowly and when there is no other choice. Some of us are not citizens. Some of us make twenty bucks too much. Some of us will lose our right to marry if we go on state disability, or our access to work or housing. Some of us belong to Nations that will not accept state money.”
“Understanding that when someone says, “I feel like shit/l’m feeling sick,” the automatic reply shouldn’t always be, “Oh, stay home/don’t do it/let me do that for you!” That instead, you can say, “I’m sorry, without trying to fix it and say, “What feels possible today?””
“This is an excellent example of where disability rights bumps against disability justice. A rights framework says that the ADA and other pieces of civil rights legislation give disabled “citizens” our rights: we simply state the law and get our needs met. Disability justice says: What if you’re disabled and undocumented? What if you think the settler colonial nation we live in is a farce and a hallucination? What if you don’t have money to sue an inaccessible business? What if the people giving you accommodations and access technology — or not — are not paid for by the state but part of your community?”
“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. Ableism, again, insists on either the supercrip (able to keep up with able-bodied club spaces, meetings, and jobs with little or no access needs) or the pathetic cripple. Ableism and poverty and racism mean that many of us are indeed in bad moods. Psychic difference and neurodivergence also mean that we may be blunt, depressed, or “hard to deal with” by the tenants of an ableist world.
And: I am still arguing for the radical notion that we deserve to be loved. As we are. As is.”
“There are official statistics now that show that at least half of the racialiazed people murdered by law enforcement are also physically or mentally disabled, Deaf, and/or autistic.”
“Harriet Tubman had seizures and narcolepsy because a slave owner threw a weight at her head. While on trips she likely had to sit down, lay down, move slowly and rest. Her comrades didn’t abandon her then, and we can figure out how not to abandon each other now.”
“There is a deep parallel between the way being a survivor is seen only as a fault, never as a skill, and the way ableism views disabled people as individual, tragic health defects (if you doubt me, think about how disabled fetuses are never referred to as disabled fetuses but as birth defects).”
“Texting, now used by everyone, was created as assistive technology for Deaf people.”