Living Independently: The PCA Journey — Part One

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

When people hear the words Personal Care Assistant, or PCA, they may assume that having one means a person with a disability cannot be independent.

For me, it means almost the exact opposite.

Having a PCA doesn’t mean I’m not independent. My PCA is one of the tools that helps me live the independent life I’ve worked so hard to build.

My journey with PCAs didn’t actually begin when I first moved into my own apartment.

When I moved out on my own in 2020, it was right at the beginning of the COVID-19 pandemic. The world had shut down, and suddenly I was living on my own at a time when having people come into my apartment wasn’t always possible.

It was challenging, but it also taught me something important about myself.

I was more capable than I thought I was.

For about the first year and a half of living independently, I learned how much I could do for myself. I adapted. I problem-solved. I figured things out.

But I also learned another important lesson:

Being independent doesn’t mean you have to do everything alone.

Eventually, as the world began opening again, I applied for help through the PCA Waiver.

That was another step in my independence journey.

So, What Does a PCA Mean to Me?

A PCA is someone who assists me with some of the things that are difficult for me to do because of my disability.

That assistance might involve personal care, getting dressed, preparing meals, household tasks, getting out into the community, or other things I may need help with.

But there’s something important I want people to understand:

My PCA isn’t there to take over my life.

I’m still the person making the decisions.

I’m still the person deciding what I want to do that day.

I’m still working toward my own goals.

I’m still living in my own apartment.

I’m still Marie.

The help simply makes some parts of my life more manageable.

I Get to Be the Boss

One of the things I appreciate about being part of a PCA Waiver program is having a say in who assists me.

That matters tremendously.

Think about it: you’re allowing someone into some of the most personal parts of your everyday life. You need to feel comfortable with that person. You need communication. You need boundaries. And most importantly, you need trust.

Being able to choose the people who help me gives me more control over my life—not less.

But being the boss isn’t always easy.

I’ve had to learn how to communicate what I need. Sometimes I struggle with asking someone to do something because I know they’re helping me, and I don’t want to feel demanding.

I’m still learning that part.

But I’ve realized something:

There is a difference between being demanding and advocating for what you need.

That’s something I want to explore more throughout this series.

Independence Looks Different for Everyone

For years, I thought independence meant proving that I could do everything myself.

Living alone during the pandemic showed me how capable I could be.

Having PCAs taught me something different.

It taught me that knowing when you need support is also part of independence.

I can be capable and still need help.

I can make my own decisions and still need assistance getting something done.

I can be strong and still ask someone for support.

Those things don’t cancel each other out.

To me, independence means having as much control as possible over how I live my life.

Sometimes I do something completely on my own.

Sometimes I adapt it.

Sometimes I ask for help.

All three can be independence.

This Is Why I Want to Talk About PCAs

Throughout this month, I want to share more about what it is really like to have PCAs.

Not just the good parts.

I want to talk about becoming your own boss, learning how to communicate your needs, building trust, setting boundaries, accepting help, and what I personally look for in a PCA.

I also want to talk about something that I think is incredibly important:

The person receiving care should still be at the center of their own life.

A PCA should support someone’s independence—not replace it.

My disability means there are certain things I need assistance with.

But needing that assistance doesn’t make my life any less mine.

I’m still the author of my own story.

My PCAs are simply some of the people helping me turn the pages.

✌️ 😊 💛

Seeing the beauty between the challenges.

— Marie W.O.W.C.P.