As Independent as Possible

A mother is asked what her greatest hope is for her disabled daughter.

She says she wants her daughter to become as independent as possible.

It sounds like love. It is love. But it’s love aimed at a target that was never the right one.

I watched this in a video from Special Books by Special Kids, an interview with a family whose daughter has Cri du Chat syndrome.

Where the Framework Came From #

The independence movement didn’t come from nowhere. It was a reaction to something real.

For most of the twentieth century, disabled people were institutionalized, infantilized, and treated as incapable of making their own choices. The independent living movement that started in the 1960s and 70s was a direct pushback against that. It demanded that disabled people be seen as adults with agency, not as patients to be managed.

That fight was necessary. It won real things. The ADA. Deinstitutionalization. The right to live in the community.

But the movement defined freedom as doing things alone. It had to. Help was associated with the institutions people were escaping. So independence became the measure of a good disabled life, and needing help became a failure to achieve it.

The Blind Spot #

The movement was built by and for people whose main barrier was being denied agency. People who could do things themselves if only they weren’t stopped.

It was never built around people whose barrier is needing help to do things at all.

When those two groups get lumped together, the independence framework quietly tells the second group that their needs are a problem to overcome instead of a reality to accommodate.

I am in the second group.

What It Cost Me #

I grew up being told I was just blind. That the fatigue was effort. That the collapse was behavior. That I would be independent someday.

The school I attended pushed independence above everything else. When my body started collapsing, they read it as a failure of motivation. They sent me home. They stripped my valedictorian status, my scholarships, my assistive technology. They almost took my walk across the stage.

I heard my mom blame herself for doing too much for me. I heard her wonder if I wasn’t trying. She couldn’t find an explanation that wasn’t someone’s fault, because the framework she’d been handed only had two options. Either I wasn’t trying, or she’d done too much.

Neither was true. But those were the only two answers the system ever gave her.

The real answer wasn’t available to either of us. My brain and body were built differently. Independence was never the right goal. Support is not failure.

The Alternative #

There’s a community that doesn’t run on the independence framework. It couldn’t.

People with intellectual and developmental disabilities often can’t be independent in the way the movement meant, and pretending otherwise just hurts them. So that community had to build a different value.

Interdependence.

Support is not failure. Capacity varies. A person can be brilliant and still need help. A person can be verbal and still need support. A person can be intelligent and still need someone to help them eat, or get dressed, or make a phone call.

That’s not a slogan. It’s the only framework that actually works for the people it serves.

I spent thirty-four years feeling like the odd one out in rooms where independence was the goal. I’m finally finding the room where the goal was always something I already believed.

What I Want for the Next Kid #

The mother in that video wasn’t cruel. She loved her daughter. She was absorbed in a framework that hurts disabled people, and she didn’t know it.

I don’t want the next kid to grow up the way I did. I don’t want another mother to wonder if she did too much. I don’t want another school to read a collapsing body as a behavior problem.

The goal was never independence at any cost. The goal is a life where support is not a failure state, where needing help is not a moral failing, where a person can be exactly who they are without being told they’re doing it wrong.

Interdependence is not failure. Support is not failure. Safety is not failure.

That’s the hope I’d wish for a disabled child. Not that they become as independent as possible. That they get the support they need to live a life that’s actually theirs.