Content Note: This essay includes discussion of disability, financial precarity, poverty, and distress related to inability to work.
I’m 38 years old and I just had to ask my mom if I could borrow money. Writing that email was enough to send me into a sobbing panic spiral about potentially spending the next 50 years without stable income.
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
― Susan Sontag, Illness as Metaphor1
There’s a strange grief in no longer being economically useful. It’s one I became acquainted with quite young. But I didn’t learn its name until my disability fully overtook my life 5 years ago, and I stopped being able to work consistently.
A note comes across my substack feed about mindset and discipline. “I have severe back pain and anemia. Made myself get up and go to the gym. Always feel better after,” Maureen comments. Mahima adds: “So true, discipline is the highest form of self-love.”
We’ve been using our productivity as proof of our worth for too long now. I don’t think it’s accidental that so many of us experience unemployment or disability as a kind of moral failure.
Much of modern Western culture, particularly in the United States, was shaped by what sociologist Max Weber called the Protestant work ethic: the belief that hard work, discipline, frugality, and productivity were signs of virtue. In The Protestant Ethic and the Spirit of Capitalism, Weber argued that Calvinist and Protestant beliefs helped shape the cultural mindset that made modern capitalism feel like something morally good and necessary. Work was no longer simply something one did to survive.2
The theology faded, but its cultural imprint remained.
“Capitalism has defined ‘health’ itself as a capacity to submit oneself to labor.”
― Beatrice Adler-Bolton & Artie Vierkant, Health Communism3
Now the sermons arrive through self-help podcasts, hustle culture, billionaire morning routines, “discipline over motivation” posts, and endless narratives about personal responsibility.
Even wellness culture often mirrors this logic, framing the body as something to optimize endlessly through regimen and self-control. The ideal person under capitalism is tireless, independent, resilient, endlessly capable of overriding their own limits in service of output. You may be severely injured and anemic but don’t you dare skip gym day.
When you become chronically ill or disabled, you begin to understand how deeply this ideology has embedded itself into the psyche. The shame of no longer being able to work consistently feels personal. As though my body’s inability to keep pace with capitalism says something fundamental about who I am.
It’s there every time you meet someone new and one of their first questions is, “What do you do?” They’re not asking about your passions, your hobbies, or the mundane human tasks that take up most of your time. They’re asking how you make money. How you turn yourself into income.
In this way, illness strips people not only of income but of social legitimacy. I didn’t just lose the ability to work consistently. I lost the cultural permission to feel worthy.
We live inside economic systems that are fundamentally hostile to bodies that cannot produce consistently. Nearly one in four working-age disabled adults lives in poverty in the U.S., compared to fewer than one in ten non-disabled adults.4
This is before accounting for what disability itself costs.
Healthcare. Specialists. Medications. Supplements. Mobility aids. Physical therapy. Accessible housing. Delivery fees when you cannot physically shop for yourself. Ride shares when public transportation is inaccessible. Caregiving.
Even the common strategies people use to survive poverty often require forms of energy that chronic illness erodes. Comparison shopping requires energy. Cooking from scratch requires energy. Navigating bureaucratic paperwork requires energy. Applying for aid requires energy. Every survival task becomes metabolically expensive when your body is already struggling to survive.
And yet the systems meant to support disabled people are structured around scarcity and suspicion.
Disability benefits in many countries remain below survival level, effectively forcing people into permanent poverty in order to qualify for assistance. In the United States, SSI payments have remained far below the federal poverty line for decades. The Roosevelt Institute noted in a 2024 analysis, “The poverty of millions of SSI beneficiaries is a policy choice.” Almost any amount of savings can jeopardize benefits.5
It starts to become obvious after a while: support is not supposed to feel like dignity.
Many disabled people find themselves trapped inside what is often called the “benefits cliff”: the impossible bind of needing to work enough to survive, but not so much that they lose the healthcare, food and housing assistance, or disability income they depend on. Earn slightly too much, and vital support disappears.6
Capitalism is organized around consistency. The worker arrives at the same time every day and performs at roughly the same capacity. Chronic illness does not behave that way. Some days I can write for hours. Other days, sitting upright feels like scaling a mountain.
Invisible illness creates its own form of social suspicion. If you are not visibly disabled enough, people are always searching for signs that you’re exaggerating. You don’t look sick. You looked fine yesterday. But you posted online. But you went to dinner once. But you smiled in that photo.
And so many disabled people spend enormous energy trying to prove that our suffering is real enough to deserve care.
“The exhausted are the human evidence of each minute misunderstood to be an empire for finance, of each human body misunderstood to be an instrument that should play a thousand compliant songs at once.”
― Anne Boyer, The Undying7
Capitalism depends on the fantasy of the independent body. A body that is self-sustaining and unaffected by illness, grief, aging, or collapse.
But none of us survive alone. The worker who appears “self-made” is still held up by invisible systems of care: parents, teachers, partners, friends, farmers, sanitation workers, public infrastructure, medical workers, emotional support, collective labor.
And culturally, we’ve been diminishing the importance of care labor for a very long time. It’s there in the way we often don’t consider raising children to be real work. It’s there in the way caregivers for aging parents, disabled spouses, and chronically ill family members are so often unpaid and under-supported. Capitalism consistently treats care as secondary labor, even though no society could survive without it.
The shame that comes up for me around not being able to work consistently anymore is complicated. I hold gratitude and humiliation simultaneously, swirling in the pit of my stomach.
The idea of my life stretching on endlessly is no longer exciting or expansive. It’s become a source of terror about how I’ll survive. It’s exhausting constantly calculating survival.
I wasn’t always this sick. I remember coming home from my 9-5 to work on music all night. Sure, I was barely hanging on most of that time. But it was also a privilege I could blend in with my peers, even if just barely. My twenties were full of travel and fun and pushing my body past its limits, and the grief over my autonomy lost is heavy now.
I’m ashamed to have to ask for help, and anxious about the ways money changes relationships. I know it’s a blessing to have a family I can ask for support, but I worry I’ll become a burden. My internalized ableism whispers: What is my life worth if I can’t sustain it myself?
I’m still a work in progress in this regard. You can logically know that humans have worth beyond economic output, but knowledge is only the first step. The deeper work is trying to untangle the nervous system from the ideology. It’s trying to convince the frightened animal part of yourself that needing help does not make you less human.
I sometimes think disabled people are forced into a more honest relationship with reality than the culture around us. We cannot endlessly pretend our bodies are machines. We cannot always override pain through discipline and positive thinking. We are confronted, over and over again, with the fact that human beings are fragile.
Maybe this is part of why disability makes people uncomfortable. We interrupt the fantasy capitalism sells us: that worth can be earned and optimized through enough effort.
I still don’t know how to fully separate my self-worth from my ability to financially sustain myself. Some days I can intellectually reject these ideas while emotionally drowning in them at the exact same time. The fear is still there. The shame is still there.
But I am trying to believe there is more to a human life than how efficiently it converts energy into labor.
And maybe the real question is this:
If your worth is not determined by your productivity, then what remains of you underneath it all?
If this spoke to something in you, feel free to share it with someone who might need it too.
