Activism and Advocacy / Connecting / Getting support / Spoonie Challenges

Welcome to Disability (a House with Infinite Rooms)

Hi there. You’re new here.

You and maybe one hundred forty-one million, five hundred thousand others. That’s a guess. An imperfect one, because the data is young and ever-changing and because lots of folks lived in this house before a brand-new Goldilocks broke in and started judging our food and lodgings. Too metaphorical? Probably. Let me try again.

Hey, Long-Covid folks, welcome to Disability.

ID: A beige tiled hallways with what seems like endless cherry-wood doors on either side.
Photo by Pixabay on Pexels.com

Some of us already lived here before this virus set up shop in our limbs, our organs, our Scottish-Moors-in-Wuthering-Heights foggy brains. Some of us are stacking up disabilities like cord wood, waiting for it to burn us out. We pre-exist, but only on the condition that we don’t upset the normies.

(I also see you, all my folks who crystal-balled the future we live in now. My Disabled peers and pals who double-masked and triple-masked but couldn’t cover up the words “acceptable loss.”)

Today I’m talking to the newbies. The folks who, maybe just two years ago, thought Disabled was a them word and not an us word.

Welcome. Take a seat. Or a bed. Or a bathroom floor, cool on your back, staring up at the light while it flickers. We don’t stand/sit/lie on ceremony here. Okay, I can’t say that. We’re humans, and I’m sure lots of us are assholes, and lots of us are angels, and most of us are just tired.

My brain is scatter-y, and I’m trying to say something to you. So let me try again.

I’m trying to say hi there. You’re new here. (I’ve already said that.)

And I want to make it easier for you. (I probably can’t.)

I’m going to try anyway because hope sometimes looks like trying. (Except when it doesn’t.)

Here’s what I want you to know:

First, don’t listen to me. There are a million how-to, life hack, find-a-God, philosophical diatribes about this and some of them will have one useful thing that keeps you going. You’re about to become a gatherer. You might be looking for one big answer and my experience is, there isn’t one.

There’s 1/1000th of one, a thousand times over.

What you think and feel about where you are today is going to morph and change and grow and break down and rebuild, over and over. Look at the fields of advice and only gather what works for you (or kinda-sorta works for you). Guard it. Plant it. Grow more. Try something different. This house has infinite rooms and a big old freaking garden full of half-grown maybes and wilting yeses. Be prepared to hate it all. To give up, then un-give up, then un-give up a little bit harder.

This is a big house, though. That’s the truth. You’re about to learn how bendy and un-helpful statistics can be, but here’s one anyway: one in five people under 75-years-old live in this house—and about half of folks over 75. There’s a community here for you, in some of these rooms. There’s so many of us that, with a bit of searching, you can feel less alone in your still-often-aloneness. There are people you can rage with, mourn with, and laugh-until-you-ache with.

There are people you can learn from and people you can disagree with (which is another useful way to figure out what works for you).

Speaking of disagreeing…

You know how, when you were a kid, there were homes the grown-ups in your life told you to avoid? You’re going to go through some of that now. If you say, “I’m Disabled,” folks are going to fight you on it. They’re going to insist you seem fine, as though Disabled and fine can’t co-exist. They’re probably going to suggest in no particular order, that you: do yoga, exercise, lose weight, get some sun, try essential oils, use your will-power, and pray to something or someone. Since you’re a gatherer now, some of that might even get picked and added to your basket. But underneath it, what most folks are saying is our house, our Disabled house, isn’t one you should hang out at. You most definitely shouldn’t move in. If you must, then please don’t put our address on your résumé. Don’t mention it at parties. Don’t take pride in the spaces you build here. After all, they’ll say, you could move out if you really wanted to. Maybe they’re afraid if you can’t move out, it means they might—someday—have to move in.

It’s not your job to allay their fear. It’s not your job to make our house fancy enough that they’ll be okay with it being so near to theirs. It’s your house now. You get to claim it however you want, whenever you’re ready.

Oh, and a warning: Unlike most new clubs/houses/muddled metaphors, the hazing can come from outside. It might be as small as an eye roll or as large as a job loss or a relationship ending. All those statistics you used to click past about how many people will maintain a friendship when a friend is Disabled? Probably best to keep clicking past them. Unless you need some anger to fuel you.

You’re going to lose people. That’s a fact. The losses can stack up too, until we’re back at the cord-wood metaphor that I’m too over-stimulated and ripped open to revisit with any grace. Fill your text-reader or your fridge door or your subconscious with glib memes that say “it’s better to have four quarters than a hundred pennies” or “go where you’re wanted” or “you will be too much for some people…those aren’t your people!” It probably won’t make the losses hurt less, but it might. Gather them if they help. Ignore them if they don’t. You have to learn what language your survival speaks.

Dang it.

I have so much more I want to tell you. I want to take a lifetime of learning from others who generously taught me and pack it up so you can skip the weird parts and the impossible parts.

I want to tell you you’re about to exist between contrasting truths. For instance, you will exist between a truth that says your life is valuable exactly as it is and a truth that says folks would let you die so they can go to a baseball game. You’re going to meet people who truly believe they’d stare down a gunslinger to save a life, and those same people won’t wear a mask to keep you safer. You’re going to have to watch folks support charities that claim to represent you (but would never hire you) while they complain you’re just not trying hard enough. I’m not telling you this to scare you, or even to prepare you. I’m telling you this because it’s true and maybe if you know it’s coming, it won’t knock you about so ferociously. It probably still will, but now you know you’re not alone. Like I said, big house. Big freaking house.

Oh! One last thing: be kind to yourself. Not buy yourself a bath-bomb or a five-dollar coffee kind. The sort of kind that accepts you may not make it to the bath today, or to a coffee date with a friend. The sort of kind that adapts to what you need, when you need it. To be kind is to treat someone like kin. So, give yourself the same space you’d give those you consider family. Then give yourself more. You’re going to need to be kind to yourself, and to the others who live in this house with you, because sometimes we’re all we have.

Okay, I’m going to stop now. I don’t want to overwhelm you (or me). Plus, what I said at the beginning is still true. There could be one thing in this whole letter that speaks to you. You could think the whole thing is bull-hockey. If one-fifth of the planet is Disabled then there are a huge number of people to look to for the pieces you need to gather. None of those pieces have to come from me.

Still, I can say this, again and again:

Welcome to Disability, a house with infinite rooms and infinite truths. Including yours. Share it when you find it. I’m still building mine.


Headshot of H.E. Casson
H.E. Casson

H. E. Casson (they/them) is a queer poet and performer whose words have been shared by Cast of Wonders, Lunate, The Quilliad, Serotonin, and Taco Bell Quarterly—among others. They are a Best of the Net nominee and have been selected for the Best Indie Speculative Fiction 2020 anthology. H. E.’s voice can be heard in the Moonbase Theta Out and Disenchanted podcasts. You can visit them and see more of their work at hecasson.com and as @hecasson on Twitter.

One thought on “Welcome to Disability (a House with Infinite Rooms)

  1. Pingback: What Language Our Survival Speaks | H. E. Casson

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