Nihil De Nobis, Sine Nobis

I am 30 years old before I see myself—my disabled self—in any kind of science fiction.

Nobody meant to write about me.

It’s early 2017 and I’m reading The Expanse series. Okay, I’m devouring The Expanse series, because my boyfriend and I watched the first episode of the television show so I immediately needed to see how the books went. Every few pages, James S.A. Corey describes space travel in their universe: specifically, the brutal force of gravity pushing against the human body as it accelerates to hundreds of miles an hour. The human body is not made to withstand pressures like this; each ship is equipped with seats that help bolster the crew, injecting them with drugs while gently cushioning them, designed entirely to keep them alive as they hurtle through space.

Despite the equipment that exists to protect them, the characters in the series suffer grievous injuries as they travel. Their organs rupture. Their blood vessels pop. Their bones dislocate. Under the extreme variables of space travel, their bodies mutiny the very same way my body revolts here, in real-time and real-space on Earth. The injuries are neither abnormal nor strange to them; pain is simply an acceptable risk for the glory of seeing the stars.

I have Ehlers-Danlos Syndrome, a degenerative collagen disorder that causes my joints to dislocate incredibly easily on a daily basis. If I turn around the wrong way while backing my car up, my ribs dislocate. If I pick up a heavy water bottle, my wrists dislocate. Bandaids tear off my skin, and I bruise in deep purples and greens if someone so much as looks at me the wrong way. Collagen, you see, is in almost every system in your body. Collagen is both the bricks and the mortar that hold the bricks together in the house that is your body, and it’s being built wrong from the moment the cornerstone is set.

But these characters! Even the most badass ones—the characters with whom I deeply identified, the women who wouldn’t take guff from anyone, anywhere—were being torn apart by spaceflight. Every time Corey described another injury, I would highlight it on my Kindle and crow out loud to my boyfriend (or text it to him, if he wasn’t in the room.) “Look! Dislocated ribs! They’ve all got dislocated ribs! I know how that feels! That happened to me this morning because I sneezed!”

Of course, these characters weren’t falling apart like so much spun sugar hit with water droplets because of a mutation in their DNA. There were only so many similarities between my life and theirs. The series wasn’t a manifesto about being disabled in space—a point driven home like a stake through my heart in a paragraph tucked neatly into one of the latest books in the series. One of the characters—Chrisjen Avasarala, a United Nations chief administrative officer with a filthy mouth and a brilliant mind—ends up in physical therapy to repair the damage done to her body after an extended stay in space. Much like our astronauts today, there is a constant battle against bone and muscle deterioration from even short trips outside of a gravity well.

In physical therapy, Avasarala is frustrated on leg day and working hard to recover. “If you want the leader of Earth, the hope and light of civilization, to get wheeled off the shuttle in a chair, you can stop,” her trainer snaps at her. “If you want her to stride out in front of the camera like a Valkyrie returned from the underworld and ready for battle, you’ll go for twelve [reps].” (I’m fairly certain President Franklin D. Roosevelt would like a word with that trainer.)

I read that paragraph and felt my heart drop down to my stomach, felt the roil of nausea and anger build in my gut. There, between the pages of a series that somehow felt like home because it was one step removed from describing my own disability, was ableism, run rampant and unfettered. Hell, it was practically encouraged! I felt my heart break just a little bit, yet another hairline fracture caused by disability discrimination. It felt like wheeling into a bar and not being able to order a drink because the countertop was too high, like any restaurant I can’t get into because there’s no ramp. It felt like someone parked in the disabled spots because it was “convenient” for them. It felt like someone asking me why I deserved to sit in accessible seating at a concert.

I narrowly avoided the temptation to throw my Kindle and watch the book shatter into a million plastic pieces. If it had been a printed paperback, I’m positive I would be able to show you the dent in the wall. “For the record,” I tweeted out to the hashtags The Expanse was using, “you can be a fucking Valkyrie in a goddamn wheelchair.” I can assure you that any human with the wherewithal, sheer willpower, and pain tolerance to put her skeleton back into place on an hourly basis absolutely deserves a place in any mythological pantheon. (Thumbs up to half of the James S.A. Corey collaboration, Daniel Abraham, for his response and apology to my tweets.)

Much like Valkyries, words have power. Every single author who has ever put words on a page knows and recognizes this power. That power is why we write. As we all know, with great power comes great responsibility. The way writers conceptualize disability in their work has ramifications. The trope of disabled bodies being lesser than non-disabled bodies, about accessible devices making you weak when you use them, is played out and exhausted. Even still, it carries over into the real world. It’s alive in the way people think about, accept, and include disability in our daily lives. When you sit down and write a made-up sci-fi story about Earth in the future, you’re perpetuating real ideas and concepts in readers here, on our Earth. The fact that no editors caught and redacted that passage speaks deeply about the ingrained, acceptable, unrecognized discrimination that is ableism, both within the publishing community and within our social mores.

I did finish reading the series, though I fell behind on the television show after being frustrated by space ships that were littered with staircases. This future was inaccessible when left to the imaginations of non-disabled creators. There’s a saying in the disability community: “Nothing about us without us.” Well, these stories are for us, by us, and about us, through and through.

Welcome to our future. We’re all fucking Valkyries here.

Ace Ratcliff

Ace currently lives and works in Oakland, CA with her fiancé, Derek, and their pack of wild beasts. She lives with hypermobile Ehlers-Danlos Syndrome, dysautonomia, and mast cell activation syndrome, all of which make for a particularly rebellious meatcage.

Ace writes about disability inclusion and representation and has bylines at io9, Huffington Post, Self Magazine, Bustle, and Bitch Media. She’s been featured in an Upworthy video which garnered more than 1.8 million views. Ace’s essay “Who Gets to Say #MeToo?” was published in Fireside Fiction‘s Fireside Quarterly July 2018 edition. Ace’s essay “Nihil De Nobis, Sine Nobis” appeared as part of Uncanny Magazine‘s Kickstarter campaign for Disabled People Destroy Science Fiction. Her poetry has been published in Breath & Shadow. Her short story, “The Ritual,” appeared in Phobos Magazine. She was a panelist at Worldcon 76. Ace’s voice as a disability activist has also been featured in The Economist, The Guardian, and Chuck Wendig’s terribleminds, and she’s gettin’ pretty good at podcasts.

When not freelancing, Ace is also the co-owner of Ace is the co-owner of Harper’s Promise, an in-home pet euthanasia, hospice and palliative care company. You can find link to her work at stayweirdbekind.com and she tweets @mortuaryreport.

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