Autonomy Is at Stake

 Autonomy Is at Stake

I’ve been thinking a great deal lately about the purpose of community supports.

For years, I assumed the goal was simply to help people remain out of institutions.

I don’t think that’s the deepest purpose.

Perhaps the purpose of community supports is something much greater.

To help preserve a person’s ability to remain the author of their own life within the community they have built.

That thought has changed the way I see everything.

Because people often confuse physical dependence with the loss of autonomy.

They are not the same.

My son Alex cannot physically carry out many of his own decisions because of catastrophic injuries.

He also does not need someone else to make those decisions for him.

Those are two entirely different things.

That has led me to a realization I can’t stop thinking about.

Autonomy is not measured by who moves your body.

It is measured by who directs your life.

Sit with that for a moment.

Because if we misunderstand that distinction…

we risk misunderstanding disability itself.

Support should never become permission to overlook a person’s voice.

Support should never become substitution.

Support should extend a person’s abilities—not replace their autonomy.

The goal of support is not to replace the person.

The goal is to help the person remain the author of their own life.

For medically complex individuals, autonomy is not an abstract concept.

It can sound like:

“Something doesn’t feel right.”

“I need repositioned.”

“I’m short of breath.”

“My chest tube is clogged.” 

Those are not simply preferences.

They are clinical information.

Listening to the individual is not separate from good medical care.

It is part of good medical care.

The longer I walk this journey, the more convinced I become that the greatest disability is not needing help.

It is losing the opportunity to direct your own life.

That is why autonomy matters.

That is why individualized support matters.

That is why relationships matter.

That is why continuity matters.

Because when the right supports are in place…

people don’t lose themselves.

They continue being themselves.

Perhaps we should stop asking:

“How much help does this person need?”

And begin asking:

“How can we best support this person in continuing to direct the life they choose?”

Those are very different questions.

One measures dependence.

The other protects dignity.

For people living with spinal cord injuries, ALS, muscular dystrophy, cerebral palsy, traumatic brain injury, and many other physically disabling conditions…

Needing help with your body should never be mistaken for needing help being yourself.

As I continue learning, one thought keeps coming back.

The purpose of community supports isn’t simply to keep someone out of an institution.

It’s to help preserve the person’s ability to remain the author of their own life within the community they have built.

If we lose sight of that…we risk protecting services while unintentionally diminishing the very autonomy those services were meant to preserve.

And perhaps that is one of the most important questions we should all continue asking.

Are our support systems helping people live the lives they choose…or are they slowly choosing those lives for them?

Because…

Autonomy is at stake.

And for many people, it is every bit as important to protect as health and safety.

#TheGoalIsLife 

• Autonomy is not measured by who moves your body. It is measured by who directs your life.
• Support should extend a person’s abilities—not replace their autonomy.
• Support should never become substitution.
• Physical dependence does not erase self-determination.
• Listening to the person is part of the assessment.
• The greatest disability is not needing help. It is losing the opportunity to direct your own life.
• The purpose of community supports isn’t simply to keep someone out of an institution. It’s to help preserve the person’s ability to remain the author of their own life within the community they have built.
• The goal of support is not to replace the person. The goal is to help the person remain the author of their own life.