I’ve read several books this year that share a joyful excitement about changing our socio-political thinking. What if we turn everything we accept as true slightly on edge? What if we could get a different perspective? What if we could see progress as a myth, and community as the future? This list includes Adrienne Maree Brown’s Emergent Strategy, Anna Lowenhaupt Tsing’s The Mushroom at The End of the World, Jenny Odell’s How To Do Nothing, and, the subject of today’s review, Leah Lakshmi Piepzna-Samarasinha’s Care Work: Dreaming Disability Justice.
Like most able-bodied people, I came very late to any nuanced sense of disability justice. (I think many of us share a collective moment of reckoning when we begin care-taking for our parents.) As part of my growing awareness, I realized that the basic provisions that affect disabled people the most, and by far the most crucially, are also a bedrock of our fully shared human condition. When disability justice activists held a “die in” in the capitol building during the 2017 ACA repeal vote, they were acting from a place of great urgency for themselves, as the people most harmed by things like pre-existing conditions clauses, but their activism helped save us all. In our daily lives, trains and buses that can accommodate wheel chairs are also easier for people with strollers or suitcases or cranky knees. Not having to go down three flights of creepy back stairs to use a restaurant restroom (I’m looking at you, England) would make everyone happier.
Which brings us to a fine line in this conversation. I’m going to highlight several revolutionary threads of Piepzna-Samarasinha’s work, but these things are not for able-bodied people to take outside of their context. White feminism has a history of co-opting other movements that must change as we become more truly intersectional. Instead, we need to learn, to consider, and to ally ourselves with the people who are already doing this work. Disabled people are not here to teach us, except to the extent that (like Piepzna-Samarasinha in this book) they choose to, and they are definitely, definitely, not here to “inspire.”
With that framework in mind, rather than attempting to comprehensively depict the wide range of topics covered in Care Work, I want to highlight two particular clusters of ideas that I found to be especially powerful for shifting my thinking.
First, the ways we think about the health of our bodies, especially about the health of disabled bodies, need to change. Imagining “sick and healed” as two polarities is harmful. That dualism, that belief that “you’re either sick or well, fixed or broken, and that nobody would want to be in a disabled or sick or mad bodymind” is both ableist and an obfuscation of healing possibility. Instead, “bodies don’t need to be cured or fixed into normalcy to be valuable.” Our ideas of healing need to shift “away from being fixed and toward being autonomously and beautifully imperfect.”
The sick/healed binary also impacts our model of care, leading to a harmful, unrealistic expectation of one (tireless, enthusiastic, able-bodied) giver and one (grateful, pleasant) receiver. But nor is the communal care sometimes constructed as an alternative always a better answer. Piepzna-Samarasinha quotes her wheelchair-using friend: “I don’t ever want to depend on being liked or loved by the community for the right to shit in my toilet when I want to.” Everyone, Piepzna-Samarasinha notes, should get “access to many kinds of care—from friends and internet strangers, from disabled community centers, and from some kind of non-fucked-up non-state state that would pay caregivers well and give them health benefits and time off and enshrine sick and disabled autonomy and choice.” When people have value outside of their health status, we can imagine more radical alternatives for care.
Dualism also leaves us with an insufficient model for the future. Are there disabled people in the future you imagine, or have they all been “healed”? Instead of wiping out the lived experiences of a vast number of people, “we could create visions of revolutionary futures that don’t replicate eugenics—where disabled people exist and are thriving, not, as often happens in abled revolutionary imaginations, revolutionary futures where winning the rev means we don’t exist anymore because everyone has health care.” Disabled people are not “a fault to be cured.” Our vision of long-term thriving can include everyone, can be anti-ableist, must be anti-ableist.
Secondly, social justice movements are more powerful when they are deeply anti-ableist. Disability justice, because it is built from access needs up, centers “sustainability, slowness, and building for the long haul.” Those are exactly the skills that most social justice organizing has historically lacked, thriving instead on burnout, pushing past boundaries, and urgency: “Our movements are so burnout-paced, with little to no room for grief, anger, trauma, spirituality, disability, aging, parenting, or sickness, that many people leave them when we age, have kids, get sick(er) or more disabled, or just can’t make it to twelve meetings a week anymore.” Instead, movements can be recreated as spaces “where building in many pauses, where building in healing, where building in space for grief and trauma to be held makes [them] more flexible and longer lasting.”
It seems like we need so much urgency, that the world is falling apart and we need to act MORE and FASTER, not less and slower. But MORE and FASTER are not our values; they’re capitalism’s values, and their use recreates all of the systems of oppression that we are supposedly working against. Instead, in a paragraph that I’m going to quote in full, Piepzna-Samarasinha proposes a new model:
“And this innovation, this persistence, this commitment to not leaving each other behind, the power of a march where you move as slowly as the slowest member and put us in front, the power of a lockdown of scooter users in front of police headquarters, the power of movements that know how to bring each other food and medicine and organize from tired without apology and with a sense that tired people catch things people moving fast miss—all of these are skills we have. I want us to know that—abled and disabled.”
I do, too.
Jessica Thinks 