World CP Day 2020: Make Your Mark

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I received an email recently, about World Cerebral Palsy Day.  This line, in particular, leapt out at me:

"People with Cerebral Palsy have mastered dealing with change, breaking down barriers and coming up with creative solutions their whole lives."

So how do we make our mark, in a society so focused on being noticed, and productive and a lot of things that those of us with disabilities usually...aren't able to be for one reason or another?

[A lit up sign reads: MAKE YOUR MARK]

***

I joked on a phone call recently that disabled people are made for quarantining.  Because it comes really naturally to me (and, I bet, for a lot of us.)  Also, with the majority staying at home for months, many previously inaccessible things have been made accessible now, which is helpful, if infuriating.

We are used to adapting.

So when Tara's job (in customer service at a grocery store) kept pressuring her to come back in the midst of the pandemic or quit, we knew some creative thought was in order.

While she was still on leave, we were thinking.

Then one day, she said, "You know, I know we try to avoid monetizing the help we give each other because it's just what we do for each other and it feels gross...  But how would you feel if I looked into becoming your PCA?"

I thought.  Then I said, "I'd feel good about it.  Like, not usually, but in the current state of things?   The bottom line is, I want you safe and alive.  This would allow you to work from home and would take a lot of unnecessary stress off of you."

"That's what I'm thinking, too," she said. "I just don't want you to think that I'm doing this because I think helping you is a burden.  It's not."

"I don't think that," I said.  "A big part of why I'm agreeing to this is because it protects you...and it protects all of us [disabled residents in our building, all high risk.]  And it allows us to keep quarantining."

"Right," Tara agreed.

***

That was months ago.  

We are no longer dealing with Tara being on unpaid leave for months at a time, relying on the generosity of friends who sent (and sent and sent) essentials our way when we really needed them.  (If you you're reading this, thank you!)

We got rid of cable, since our DVR / cable box quit working and we can't have anybody in to replace it.  Turns out, downsizing our cable is saving us $150 a month.  Which is a lot of money if you're us.  

That's not to say that we're taking money baths now.  It's that now I can afford new shoes for the first time in eight months (with CP, we need to replace them every three) and kitchen utensils, and warm clothes for winter.

And we know that being able to rely on each other - having friends who supported us when we could not - finding ways to cut costs - are privileges that not everyone has access to.

Still, I think a lot of disabled folx might agree that we make our mark by figuring out a way to bloom where we're planted, so to speak.

This is an unprecedented time, and we are all getting through it the best we can.

***

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