Living Independently: The PCA Journey — Part Four

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

Having a PCA is about much more than having someone come into my home and help me with certain tasks.

This person becomes part of my everyday life.

They may see me when I’m having a great day and when I’m struggling. They may help me with personal things that I wouldn’t trust just anyone to help me with.

That’s why choosing the right PCA is extremely important to me.

Being part of a self-directed PCA program gives me the opportunity to have a say in who works with me. Over time, I’ve learned that there are certain qualities I need in the people who become part of my team.

Here are seven things I look for in a PCA.

1. Teamwork

The first thing I look for is someone who understands that we’re a team.

I don’t want someone coming into my home and immediately taking over because they think they know what’s best for me.

I know my body.

I know my routine.

And I know what I can and cannot do.

A good PCA works with me, not around me or over me.

Sometimes I may need more help. Other times, I may want to try something myself.

Teamwork means figuring that out together.

2. Safety

When someone is helping me physically, I need to know that I can trust them to keep me safe.

Having cerebral palsy means I move differently, and there are certain ways I need things done.

A PCA needs to listen when I explain how to assist me.

They shouldn’t assume that because they’ve helped another person with a disability, they automatically know how to help me.

Every disabled person’s needs are different.

Safety begins with listening.

3. Understanding My Strengths and Weaknesses

I want a PCA who learns what I actually need help with instead of assuming I need help with everything.

There are many things I can do myself.

There are other things I can do with adaptations.

And there are things where I genuinely need another person’s assistance.

A good PCA learns the difference.

I don’t want someone doing something for me simply because it would be faster.

Sometimes independence takes me longer.

That’s okay.

Give me the opportunity to do what I can, and be there when I need help.

4. Trust

Trust may be one of the biggest things I look for.

When someone comes into my home and helps with personal parts of my life, I need to feel comfortable with them.

Trust doesn’t always happen immediately.

It’s something that develops over time.

I need to know that I can depend on the person.

I need to know they’ll listen to me.

And I need to feel safe being myself around them.

For me, the best PCA relationships aren’t simply about completing a list of tasks.

There’s a human relationship involved too.

5. Respect

I want to be treated like an adult.

That may sound obvious, but people with disabilities aren’t always treated that way.

Having a PCA doesn’t mean that person gets to make decisions for me.

It doesn’t mean they get to speak for me.

And it doesn’t mean my opinions suddenly matter less because I need assistance.

This is my home.

This is my body.

This is my life.

Respect means remembering that.

And respect goes both ways.

I also have a responsibility to respect the people who work with me.

6. Knowing When They’re Working

One of the interesting things about being able to hire people I know is that the relationship can sometimes feel very casual.

We may joke around.

We may talk about our lives.

We may have fun together.

I like that.

I don’t want having a PCA to feel clinical all the time.

But there also needs to be an understanding that when someone is working as my PCA, there are responsibilities that need to be taken care of.

There can be friendship.

There can be laughter.

There can be companionship.

But there also has to be professionalism.

Finding that balance is important.

7. Having Fun Together

Yes, I actually think this belongs on the list.

Life shouldn’t always feel like a checklist of things that need to be done.

I want people around me who I can laugh with.

Someone who understands my personality.

Someone who doesn’t make disability the center of every conversation.

Sometimes we’re getting things done.

Sometimes we’re talking.

Sometimes we’re laughing about something completely ridiculous.

Those moments matter too.

Because my PCA isn’t working with a diagnosis.

They’re working with me.

And I’m a whole person with interests, goals, relationships, dreams, frustrations, and a sense of humor.

The Right PCA Is Part of My Team

No PCA is going to be perfect.

And I’m certainly not a perfect boss.

We’re human.

There will be misunderstandings.

There will be days when communication could have been better.

There will be things we have to figure out together.

But when there is teamwork, safety, understanding, trust, respect, responsibility, and even a little fun, a PCA relationship can become something really valuable.

The right PCA doesn’t take away my independence.

They help me protect it.

I don’t need someone to come into my life and take control.

I need someone willing to stand beside me while I remain in control of my own life.

That’s the kind of PCA I want on my team.

✌️ 😊 💛

Seeing the beauty between the challenges.

— Marie W.O.W.C.P.