Becoming Disabled

When the world wasn’t built for you

Category: The Body

Sometimes suddenly. An accident. A stroke. A diagnosis that changes everything in a sentence. One day you were one person. The next day you were another. The suddenness is its own trauma. No time to prepare. No gradual adjustment. Just before and after. Sometimes slowly. The decline that creeps. The ability that fades. The thing you could do that you can’t do anymore. The slowness is its own cruelty. Watching yourself change. Hoping it will stop. It doesn’t stop. However it happened, you’re here now. In a different body. A different life.

The First Realizations

The world has stairs. So many stairs. You never noticed. Now you notice. The stairs are everywhere. The entrances that aren’t entrances. The buildings that don’t want you. The stairs are a message: you weren’t considered. The world moves fast. Faster than you can now. The pace assumes ability. The schedules assume capacity. The speed assumes bodies that work a certain way. Your body doesn’t work that way anymore. The world doesn’t slow down. People don’t know what to do with you. Around you. They stare or look away. Help too much or not enough. The discomfort is theirs. The burden of their discomfort is yours.

The Grief

You’re losing your body as it was. The body that worked. That moved. That did what you asked. The body you took for granted. You didn’t know you were taking it for granted. No one does. Until it changes. You’re losing your future as you imagined it. The plans. The dreams. The assumptions. The future needs revision. Radical revision. The grief isn’t linear. It cycles back. Returns when you thought it was done. Triggered by what you can’t do. By anniversaries. By seeing others do what you can’t. The grief is ongoing. Managed, not cured.

What Rebuilds

Identity rebuilds on new foundations. Not on ability. On something else. Values. Relationships. Purpose. The identity that doesn’t depend on what your body can do. The identity that survives the body’s changes. Joy rebuilds. Slowly. In unexpected places. The joy is still possible. Different. But possible. The joy is not betrayal of the grief. The joy is survival. The joy is life continuing. You are not less. Not less valuable. Not less worthy. Not less human. The disability doesn’t diminish you. The world’s failure to accommodate doesn’t diminish you. You are whole. Different and whole.

Good Company

Sitting Pretty — Rebekah Taussig, 2020
Taussig has been a wheelchair user since childhood, but this book isn’t a memoir about overcoming. It’s about looking, really looking, at the world’s design and noticing who it was built for. She writes about curbs, kitchens, job interviews, and the exhausting performance of existing in spaces that didn’t consider you. It’s warm, sharp, and furious in exactly the right proportions. The book that names the architecture of exclusion without ever letting it have the last word.
The Diving Bell and the Butterfly — Julian Schnabel, 2007
Jean-Dominique Bauby wakes from a coma with locked-in syndrome. His mind is intact. His body responds to nothing except one eyelid. He blinks an entire book into existence. Schnabel films much of it from inside Bauby’s perspective, you see what he sees, hear what he hears, feel the unbearable distance between the person inside and the world outside. It’s devastating and astonishing and it refuses to reduce a disabled life to tragedy or triumph. It just stays with him, one blink at a time.
Songs in the Key of Life — Stevie Wonder, 1976
Wonder was twenty-six and already living in a body the world wasn’t designed for. He made the most expansive, joyful, furious, generous album in the history of popular music. It’s about love, injustice, God, poverty, laughter, and being alive in a world that underestimates you at every turn. Nothing about it asks for pity. Nothing about it performs inspiration. It’s simply what happens when someone builds their own architecture because the existing one wasn’t built for them.