What "Independence" Actually Means When You Can't Get Out of Bed Alone

The word “independent” is one of the most loaded words in the English language and disabled people are forced to live inside it every day.

Non-disabled people use it to mean something specific. Doing things on your own, no help, and no assistance. You, by yourself, accomplishing the task. It’s the version they put on greeting cards for graduations and the version they use to decide whether a disabled person is succeeding or failing at being a “real” person.

By that definition, I’ve never been independent a single day of my life.

I can’t get out of bed without help. I can’t shower, get dressed, or transfer to my chair without another human. I can’t drive and there are days I can’t lift my own arm. If you’re using the greeting-card definition of independence, I lose every time. So does every disabled person I know along with every elderly person who needs help with stairs, every parent of a small child, every person recovering from surgery, every person on dialysis, and every person who has ever asked a friend for a ride to the airport.

Which should be the first clue that the definition is broken?

The Lie We’ve All Been Sold

Non-disabled people imagine they’re independent because the help they receive is invisible to them. They didn’t grow their own food, build their own house, manufacture their car, lay the roads they drive on, or generate the electricity that powers their phone. Somebody made their clothes, clean the streets they walk down, and is on call for the emergency they’ll have someday. The entire structure of their life is supported by other people’s labor, and they call themselves independent because none of that labor is happening in their bedroom in the morning.

That’s called invisibility, not independence.

The “independence” non-disabled people perform is a story they tell about themselves, sustained by a culture that hides the labor that makes their lives possible. The second the labor becomes visible, like needing a wheelchair or help showering, they panic. They finally saw the lie crack.

Disabled people see the lie earlier because we have to. The supports that hold up our lives aren’t optional or invisible. They’re scheduled and show up at 7am.

What Independence Actually Is

Here’s the definition I use, the one I think is honest and that disability advocates have been writing about for decades.

Independence is not doing things alone. Independence is having agency over the help you receive.

By that definition, I am extremely independent. I direct my own care, hire my PCAs, and set the schedule. I decide what gets done and how. The help is structured around my life, not the other way around. The fact that I can’t lift my own arm has nothing to do with whether I’m leading my own life. I’m leading it, the arm-lifting is just one task in the much larger job of being me.

By the same definition, a lot of non-disabled people are less independent than they think. The middle-aged man whose wife manages his entire schedule, calendar, household, food intake, social life, and who would be functionally incapable of running his own life without her -- he’s not independent. He’s dependent on a specific person whose labor he refuses to name. Disabled people get clocked for needing help, but he doesn’t. That’s a huge difference in who gets credit for the labor.

Why This Definition Matters Right Now

This is the entire fight over home and community-based services, the asset limits that keep disabled people in poverty, the Medicaid work requirements that just kicked in, and the question of whether disabled people get to live in their own homes or get warehoused in institutions.

The greeting-card definition of independence is what nursing homes are built on. The thinking goes if you can’t do things alone, you can’t live alone, so you have to live somewhere where someone else makes all the decisions for you. Once the definition collapses “needs help” into “can’t run their own life,” institutionalization looks logical. Loss of autonomy looks like care and extending life.

The honest definition of independence is what HCBS waivers and community-based care are built on. The thinking goes: people need help, the help can come into the home, and the person receiving the help can still be the one running the life. The help is just infrastructure like roads, electricity, and the people who make the food in the grocery store.

This is why disability advocates have been fighting for decades to change how the word is used. The greeting-card definition is a policy weapon used to justify taking choices away from people who need help. It’s how you turn human beings into care recipients instead of citizens.

What I Want Non-Disabled People to Understand

You’re not independent in the way you think you are because none of us are. Independence as the absence of help is a fallacy maintained by people whose helpers are invisible to them. The moment you need a caregiver, and you will, that fiction will dissolve. Your only hope at that point will be a system that defines independence the way disabled people have been defining it the whole time.

So, you have two options. You can keep performing the lie until your body forces you to drop it, panic for a few months while you adjust, and then quietly adopt the disabled definition of independence without ever giving us credit for getting there first.

Or, you can listen now. Believe the disabled people who have been telling you for decades what this word actually means. Support the policies that protect everyone’s ability to lead their own life with whatever help they need. Stop using “independent” as a compliment that erases the labor making your life possible.

I’m independent because I run my own life. The assistance isn’t the opposite of that, it makes it possible.

That’s the definition that’s been right the whole time. Catch up.

Solidarity forever.

-Steve