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So I’m ready to be disabled now. (Still a #spoonie, undecided on ‘crip’)

Yeah I’m not sure about the ‘crip’ term.

Conceptually I understand the idea of embracing and re-appropriating terms that are negative.

Yet as a black woman, the exercise hasn’t worked for me on the ground. If everyone can’t call me the B word or the N word without me having negative feelings about it, my preference is that no one does.

But I’ve decided to let it be okay for people who want to call themselves it, and to respect why, whether I fully understand or not, and whether it works for me or not.

Who knows, maybe I will embrace calling myself a crip, just as I now embrace the less-stigma-ed word, disabled. Instinct tells me there’s more reading & research to be done there.

let's transform how disability is perceived

Yes, I’m working on embracing the term “disabled” – before I was able to take the interim baby step of being called a spoonie, there were several reasons why I didn’t think I could affix this label to myself.

For a minute I wasn’t even sure if it was an insult. I remember thinking “do we call people that? Or is that weird “differently abled” thing legit?”

(Spoiler alert- despite the good intentions of several organizations that help the disabled, I’m yet to meet a disabled person who is cool with standing under the “differently abled” banner. Do you see how this speaks to disability being perceived as a negative?)

I internalized the ableist notion that it was something to hide and be ashamed of, for a while. And then, until I spoke to people with more serious disabilities, that I wasn’t sick enough to be allowed to use the label.

Or, before I spoke to other people with invisible illnesses, I wondered if I was sick in the right way.

I wondered if thinking of myself as disabled was me giving up.

But when I gave it some thought, all the ideas in my head about running from the label “disabled” – as well as the actions I forced myself to take to support this notion- came from outside me.

This struggle to make myself fit into what I thought was normal was not helpful in the least. Not to the people around me, not to family who wanted to help, not to myself.

All that did was make everything worse.

internalized ableism is real

I pushed myself to get better because I thought, “it’s just pain.”

That just made me have more bad days, making everything worse.

By then I couldn’t afford healthcare, I went to the ER on my bad days and long story short, one year of being a in a drug fog later?

100 pounds heavier and a new nerve damage aliment.

So did I stop then?

No. That would have been clear headed.

With the pain I was long past clear headed.

My mama even told me “the wheelchair services are there for people who can’t make the walk through the airport.”

Did I listen?

No.

It only took one time for me to stop being stubborn about it.

It was WAY more embarrassing and shameful having a breakdown in the airport and missing my flight.

And I realized that I personally didn’t remember being focused on the people in the airport sitting in wheelchairs, ever.

So why did I think it would draw unnecessary attention to me?

And why in the world did I care?

Thank goodness for turning 40. After that I ran out of fucks and sat myself down.

I’ll spare you the rest of the blow by blow and just say this.

If you have a currently manageable health condition, or even a chronic unmanageable one?

Don’t make it worse by trying to push yourself.

Not being able to do what others do doesn’t mean you’re lazy.

being disabled is not a negative thingI’m sure somewhere in the world there are 8 people faking it because they have a friend at whatever office approves disability payments.

So they can get the pittance that probably 75% of disabled people don’t have the stamina to apply for.

Or the money to hire a lawyer to reapply because most first applications are rejected.

Or attention because that’s the one thing every disabled person wants, someone gawking at them.

Okay so I’m not sure these people exist but here’s my point.

There’s some underlying crudiness in our culture that can make you feel like you’re somehow unworthy if you admit to not being able to do something.

That you’re sick or otherwise unable doesn’t seem to matter.

In a society where capitalism rules, being able to produce, to be useful in conventional ways is the perceived height of worth.

Therefore the perceived opposite is being unable. And being disabled is somehow seen as worse.

Only it’s not.

1- Disabled people are inherently worthy. We were born.

2- Disabled people do contribute to society. Perhaps not always in ways that don’t directly impact the bottom line of a balance sheet. But we do.

For example, in a fascinating essay I wish I could find, our bodies contribute to medical research.

Beyond the many unique ways we contribute through our disabilities, we make the same non-financial contributions that everyone does.

We provide love and companionship like anyone. We create art and are great friends.

Our Worth isn’t increased by how (or how much) we make money or what we can do with our physical bodies. Neither is our worth diminished by what we cannot do.

I’ve chosen to embrace the idea of being disabled by seeing it as a neutral fact about myself, like my hair length or how many teeth are in my mouth.

I hope that over time the perception of what it means to be disabled will transform, from spoonies to wheelchair users to those who live life laying down.

Maybe it’ll be easier for people to take care of themselves during the transition from a person with an occasionally inconvenient illness to a disabled person if people stop acting like it’s this terrible unbearable tragedy.

2 thoughts on “So I’m ready to be disabled now. (Still a #spoonie, undecided on ‘crip’)

    • <3 you back. (I need a plugin that lets all my emoticons show.)

      It's hard. Suddenly you're in this invisible parallel universe asking yourself if you're sick enough to embrace a label that admits that you might not get physically better, just stable. I'm here for you if you need to talk it out.

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