Living Independently: The PCA Journey — Part Seven

Our Beautiful Challenges — Marie W.O.W.C.P.

For a long time, I thought independence meant doing everything myself.

If I could do something without help, I was independent.

If I needed someone to help me, somehow that felt different.

As a woman with cerebral palsy who spent years dreaming about living independently, I think part of me felt like I had something to prove.

I wanted to show people what I could do.

But living independently has taught me that independence and doing everything alone are not the same thing.

In fact, sometimes having the right support is exactly what makes independence possible.

What Independence Looks Like for Me

Independence doesn’t look the same for everyone.

For me, it means having control over my own life.

It means deciding how I want to spend my day.

It means choosing my goals.

It means deciding who I want around me.

It means having a voice in how I’m supported.

And yes, sometimes it means asking someone to help me.

That doesn’t make the decision any less mine.

If I decide what I want to do and someone assists me in doing it, I’m still the one directing my life.

That’s independence.

My PCA Doesn’t Replace My Independence

Sometimes people see a person receiving assistance and assume the helper is the reason that person can function.

But I don’t look at my PCA that way.

My PCA is a tool in my independence toolbox.

The same way my walker helps me get around, adaptations help me accomplish certain tasks, and transportation helps me get where I need to go, a PCA provides another form of support.

The support doesn’t replace me.

It helps me live the life I’ve chosen.

My PCA isn’t the author of my life. I am.

I Still Decide

Having someone help me doesn’t mean that person suddenly gets to make my decisions.

I decide what I want to eat.

I decide where I want to go.

I decide what I want to accomplish.

I decide what kind of help I need.

I decide what I want to try on my own.

And I decide when it’s time to ask for assistance.

That’s why choice is such an important part of independence for me.

Sometimes I do something completely on my own.

Sometimes I adapt it.

Sometimes someone assists me.

The method may change.

But I’m still making the choice.

Support Can Give You More Freedom

There was a time when I might have looked at needing help as something that limited my independence.

Now I see it differently.

The right support can actually give me more freedom.

Instead of spending all my energy struggling through one physical task just because I want to prove I can do it, I can accept assistance and use that energy somewhere else.

Maybe I use it for writing.

Maybe I go to the gym.

Maybe I spend time with people I care about.

Maybe I advocate for something that’s important to me.

Or maybe I simply enjoy my day.

I don’t have an unlimited amount of physical energy.

Using support wisely allows me to decide where I want that energy to go.

We All Depend on Someone

The more I’ve thought about independence, the more I’ve realized something else.

Nobody truly does everything alone.

People depend on spouses.

They depend on family.

They depend on friends.

They depend on coworkers.

They pay people to repair their homes, prepare food, provide transportation, or help with things they don’t know how to do.

We don’t usually look at those people and say they’re no longer independent.

Yet when a person with a disability receives assistance, sometimes society sees it differently.

Why?

Needing help is part of being human.

My help may simply look different.

Independence Is Having a Choice

Today, I define independence very differently than I once did.

Independence isn’t:

“I can do everything myself.”

For me, independence is:

“I get to decide how I live my life.”

Sometimes that means doing something myself.

Sometimes that means accepting support.

Sometimes that means saying, “I need help.”

And sometimes it means saying, “No thanks, I want to try this myself.”

All of those choices belong to me.

That’s the part that matters.

I am not less independent because I have a PCA.

I’m able to live independently because I have built the right support around me.

There is strength in doing something yourself.

There is also strength in knowing when you don’t have to.

Independence isn’t doing everything alone. It’s having the freedom, support, and voice to live your life your way.

And that’s the kind of independence I’ve worked so hard to build.

✌️ 😊 💛

Seeing the beauty between the challenges.

— Marie W.O.W.C.P.