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January 10 - January 26, 2025
When you have chronic illness, life is reduced to a relentless rationing of energy.
It costs you to do anything—to cook for yourself, to get dressed, to answer an email. For those without chronic illness, you can spend and spend without consequence: the cost is not a problem.
“Most medical literature tends to presume a white and middle-class subject for whom feeling bad is frequently a mystery because it doesn’t fit a life in which privilege and comfort make things seem fine on the surface.”
“wellness,” as it is talked about and sold in America today, is a white and wealthy idea.
“Psychologists have constructed a myth—that somewhere there exists some state of health which is the norm, meaning that most people presumably are in that state, and those who are anxious, depressed, neurotic, distressed, or generally unhappy are deviant.”
“PTSD better describes the experiences of an American soldier who goes to Iraq to bomb and goes back to the safety of the United States. He’s having nightmares and fears related to the battlefield and his fears are imaginary. Whereas for a Palestinian in Gaza whose home was bombarded, the threat of having another bombardment is a very real one. It’s not imaginary … There is no ‘post’ because the trauma is repetitive and ongoing and continuous.”
The ambiguity is moral as well as medical: a soldier who commits war crimes can share the diagnosis with his victims.”
There has been a slew of writing in recent years about how “female” pain is treated—or rather, not treated as seriously as men’s pain in emergency rooms and clinics by doctors, specialists, insurance companies, families, husbands, friends, and the culture at large.
“Nationwide, men wait an average of forty-nine minutes before receiving an analgesic for acute abdominal pain. Women wait an average of sixty-five minutes for the same thing.
(Studies have shown that white people will listen to other white people when talking about race far more openly than they will to a person of color.
Perhaps my dead need me too much. Perhaps I’ve never gotten over anything. Perhaps I’ve had some bad luck.
Perhaps right now I’m not only writing about personal issues but structural ones.
such conditions keep me from participating fully in my life, work, relationships, and society—
Participation in the stuff of life is always a negotiation with how I want to participate on my own terms and how my participation is dictated by terms over which I have no control.
“This is the oppressor’s language,” Adrienne Rich wrote in 1971, “yet I need it to talk to you.”
In Cree, one does not say, “I am sick.” Instead, one says, “The sickness has come to me.”
respects both the self and the illness as separate entities that can interact with and encounter each other, rather than one subsuming the other.
To be pathologized is to be allowed to survive.
America is an unlivable place for nearly all of its citizens, but especially the disabled.
living in a society that supports my body and its needs has proven almost inexplicably different from living in one that did the opposite.
Because Butler’s premise insists that a body is defined by its vulnerability, not temporarily affected by it, the implication is that it is continuously reliant on infrastructures of support in order to endure, and so we need to reshape the world around this fact.
all our bodies and minds carry the historical trauma of oppression,
it is the world itself that is making and keeping us sick.
For capitalism to support care would be the end of capitalism.
Under capitalism, the “well” person is the person well enough to go to work. The “sick” person is the one who is not well enough to work.
What is so destructive about this conception of wellness as the default, as the standard mode of existence, is that it invents illness as temporary.
The most anti-capitalist protest is to care for another and to care for yourself.
In these cases, there is a clear before and after, your life sliced into two parts—what you used to be like, and what you are now—and disability functions narratively in this story as the dramatic pivot.
You start asking for help, trying to explain your new self and all of its embarrassing needs. I need help, I need someone to carry this for me, open this, move this, I need, need, need.
You feel you are a terrible burden. You try to suffer the right way, be a good cripple, be the respectable kind of sick person. Your guilt and shame are worse than the disability itself.
Maybe when you hear someone praise the value of resilience, you want to smash something—you still sting from all the times trying to be resilient leveled you.
Maybe the blast radius of disability destroys everything and also makes new worlds. Maybe these are worlds of paradox: both a radical limitation of what you used to be able to do and an explosion of the horizon around what you thought would ever be possible.
As I have continued to live in the blast radius of disability, I have become better at detecting ableism, as if I’m gaining fluency in a language.
It should give us pause to notice that illness and disability—the most universal facts of life—are languages very few of us know how to speak, and, more than that, they are languages we are taught we should not speak in public, and if we do, we must use the language of ableism to do so.
The thing about illness and uprisings is that they both show up as surprises when they’re not.
Cutting the story of your life in half—before you got sick, after you got sick—feels good because it feels causal, chronological, breadcrumbs in the forest that haven’t yet been carried away by the birds, you just have to follow them to get back to where you were before.
The ableism that capitalism feeds on requires and enforces chronological time, enshrining quantity over quality, dictating eight valuable hours per day, forty hours per week.
Time without quality can work ceaselessly, for day is no different than night, winter no different than summer, time soaked through with the need to rest, mourn, care, breathe, no different than time driven by labor and profit.
when you can, maybe be curious about why your disability makes you hate yourself.
Note the logical leap here from a clinical perspective: that what cannot be controlled ceases to be real. So, is controlling reality what determines that it is real?
If the etiology is known, it’s a disease. If no one has a clue, it’s a disorder.
The extent that they allow trauma to reach is only interpersonal—never intergenerational, institutional, societal, political—yet it seems to me that the list of reasons why someone might feel that themself or their world is not real is far more explicable by phenomena that go beyond the interpersonal.
exploitation requires an accumulation of differences,
Capitalism objectifies the body. It views the body as an exploitable resource
etymological root for the words “privilege” and “private” is the same. It’s from the Latin “privus,” which means “individual.”
In illness, time slows down so extremely as to become still and unbearably heavy.
The future gets further and further away, and the present moment—the one soaked in illness—becomes huge and cruel.
We’ve known that a revolution can look like a horizontal body in a bed, unable to go to work. We’ve known that it might look like hundreds of thousands of bodies in bed, forcing the exploitative machinery of the world to a stop, separating life’s value from capitalist productivity.
See how hard it is to do? How impossible to sustain as the priority? The world isn’t built to give care freely and abundantly.
Revolutionary care will take all of us—it will take all of us operating on the principle that if only some of us are well, none of us are—which demands that we live, not for the myth of the individual’s autonomy, but as though we are all interconnected.
