In September 2017, Uncanny Magazine published my short story, “Clearly Lettered in a Mostly Steady Hand.” It’s a story that deals with being different and disabled in the first person, and in some particularly angry ways. Afterwards, I had some interesting conversations about why I wrote it in the first person. The comments included: The story makes people uncomfortable. It has a very strong voice. People might not want to picture themselves as inside the character. It’s too scary.

One reviewer addressed the story without ever mentioning the narrator. I heard afterwards: a story like that may be more popular when written in the third-person point of view.

But for my purposes with the story, writing third-person point of view felt a lot like sympathy does, when it is misapplied.

Many of us are taught young that sympathy is What One Does When Shit Happens. Hell, there’s a whole aisle of cards for that.

For my story, I didn’t want my readers to feel sympathy. I wanted to invoke empathy. To demand it. I wanted readers to feel what the main character felt, to imagine being her. I wanted them to experience her anger as well. And that, for many, was uncomfortable.

Expressions of sympathy, heard or said, can include many things—including comments about strength, of inevitability, of inspiration. They often hit the ears of the hearer with a different kind of impact than the speaker meant them. Often, such expressions aren’t a way to express support. They’re a way to establish distance.

“I think you are so strong.”

On the sliding scale of sympathetic statements after sharing bad news, or a tough day, or venting about a bad doctor or a tough outcome, there are highs and lows. The best of them can act as a bridge toward a bigger conversation. The worst can act as a wall that separates the lucky from the unlucky.

“I think you’re an inspiration.”

Some of these statements have the benefit of being non-helpy and non-advice-ridden. But they’re kind of useless except as filler that makes the speaker feel good about themselves (and sometimes a little superior), while doing little for the recipient.

“I don’t know how you do it.”

When I was younger, someone close to me got a tough diagnosis, and I was frightened for them. I wanted to comfort them, and the tools I had were inadequate. I turned to sympathy, saying, “I’m so sorry this is happening,” because I wanted to say something.

“(I think) It is God’s will.”

It was a statement that opened the door to more discussion, and that was good. Sometimes sympathy is useful like that.

“I wish this wasn’t happening to you.”

Other times, I’ve said something that has, in retrospect, been not only useless, but actively drawn a line of demarcation between me and someone else, and I wish I hadn’t. I’ve said, or thought many of the following: how brave. How strong. I don’t know if I could deal with whatever this person is dealing with.

“I feel your pain.”

But.

Beneath sympathetic phrases lies a chasm of distance, and it’s easy for both the speaker and the recipient to fall in. And once you’re in it, it’s hard to climb back out.

“I want you to call me if I can ever help.”

I’ve heard someone say, “How did this happen? You did everything right.” In a culture of sympathy, that’s the bargain we’ve made: there’s a line drawn between people, between I and you. It’s a feeling related to that fear of “this could happen to me too.” There’s also a little bit of curiosity. If you, the person experiencing the problem, could just tell me a few more details about this thing that is happening, I am certain that I could feel more sympathy towards you.

And that’s freaking dangerous.

And although sympathetic statements often start with an “I”—I think / I wonder if / I’m so sorry / I feel your pain—they leave a residue of “how can I avoid this,” or ward it off behind for the listener to mop up. Especially if the listener resists sharing more details. Then there’s resentment, a feeling that a kind outreach has been batted away. Even if this desire for details and the resulting resentment of the other person, so that the speaker can feel better, is based in fear.

“I’ve heard whatever doesn’t kill you makes you stronger.”

It’s the kind of fear that paints good health as a result of good behavior, good genes, or good morals instead of just luck. It’s the kind of fear that renders illness and disability as a reckoning, and worse, as a kind of pity porn that those dealing with a diagnosis are expected to reciprocate for everyone who gives them their time.

“I want you to tell me everything. Don’t worry, you won’t gross me out.”

Sympathy contains the kind of fear that is often an undernote to the life of someone with chronic disabilities. That it’s something you did, a set of fail points that someone else can see, evidenced by what is happening. That’s the chasm—the distance. That’s the ugly underside of sympathy.

“This could be a blessing in disguise.”

Sympathy doesn’t necessarily see the person. It sees the problem and speaks to it. It takes as much as it offers. And it doesn’t offer much besides the speaker’s presence.

“Think on the bright side.”

But look at the difference between the statement above and the statement below.

“Is there anything else you want to share with me?”

Empathy listens. Empathy might not say much, and when it does, it could be an action, not words. Empathy (unlike the American healthcare system) understands that disability and illness is not an either/or. It’s a sometimes. It’s a thing that happens.

“You’re making a whole lot of sense, this is infuriating.”

Empathy can be uncomfortable. It means instead of looking at a person, projecting your feelings onto them, you need to try to understand what the person is seeing. Feeling. Experiencing empathy is often easier than having to be grateful for sympathy.

“That does sound really frustrating.”

The origin of the word sympathy is sym-pathos, or “feeling-with.” For empathy, it is em-pathos, or “feeling-in.” In the current era, especially when it comes to disability, while empathy has maintained that interiority of feeling, of being within a circle of support, sympathy has almost become a kind of taking. A feeling-for. In its worst instances, sympathy becomes a kind of chest-thumping grandstanding, where the act of feeling sympathy is more important than whatever has happened to create that pathos, that feeling that could be given any number of prepositions: with, in, for, to. There is a sense of otherness to sympathy. A sense of warding, sometimes. A silent phrase on the end of the statement that distances the speaker from the thing being said and the person they’re talking to.

“I know you like [apples], I’m going to leave some here in case you want them later.”

Empathy sometimes doesn’t even get expressed in words. It is actions. It’s the delivery way a community quietly (or loudly) comes together to support someone, without expecting anything from them in return. It is the person who sits with you silently until you are ready to speak.

“I’m listening.”

In its best forms, an empathetic community would be populated with doctors and nurses as well as family and friends. It’s incredibly empowering to have those gatekeepers to feeling better talk as if they’re on your side, rather than in opposition.

“Want me to come by and walk your dog/feed your cat this week?”

Empathy is a matter of standing in the place of or with versus speaking to or for.

“How are you feeling about things?”

In the linguistics of disability, the difference between empathy and sympathy is a matter of prepositions.

“You’re right. This totally sucks.”

It’s a matter of trying to see things in first person versus third.

And that’s why writing in the first person is important to me, especially in science fiction and fantasy, and especially with stories like “Clearly Lettered in a Mostly Steady Hand.” It might not be pleasant, but doing so is a way to provide that perspective which so often is othered, distanced, and given sympathy, not empathy. To narrow the gap between one point of view and the next.

When I was a kid, my family took me to Halloween Horror Nights at Universal Studios. I don’t remember the event very well, but they tell me I took it upon myself to try and scare the people trying to scare me. The one thing that did stay with me was refusing to go into the one attraction that was set up like a mental institution. I wasn’t easy to scare, but under no circumstances would I get anywhere near that one.

It was the same story with horror movies. I grew up watching all kinds of horror: slasher films with cousins, more psychological films with my mom. They were a fun kind of frightening, and I loved the thrill of it. As I got older, I started watching them with friends late at night, making fun of the cheesy ones and jumping at every sound when we stumbled across one that actually scared us. I loved a lot of what we watched, but I got uncomfortable whenever institutions came up, or they started talking about a villain as explicitly having a mental illness. Silence of the Lambs was a particularly troubling example. It made my skin crawl and got my hackles raised even though I didn’t really understand why.

Then I turned sixteen, got my first diagnosis of Bipolar II, tried to commit suicide, and ended up in a crisis unit for the first time. I look back on those early reactions and I laugh; it’s almost like I knew what was coming.

There was no lightning strike moment of realization that my fear was misplaced, but as I continued watching horror, my opinion slowly started to change. Instead of uncomfortable, I started to get annoyed, even angry, at the patterns I saw. The people who were obviously mentally ill, the people who were like me, were never the heroes. If I was lucky, they’d be the victims, but never the last one standing, or even the one who took the bad guy with them in the climactic showdown. More often they were the bad guys: the villains, the tormentors, the people who were supposed to scare me. But it’s hard to be afraid of them when I understand them better than the heroes.

Just about everyone I know is some kind of mentally ill. I know people struggling with OCD or depression, a few who are on the schizophrenic spectrum. I myself deal with occasional hallucinations and delusions, violent thoughts, and other symptoms that would get me cast in the role of the antagonist in any horror movie. None of it has sent me on a killing spree.

Instead, I survive. I survive the images that go through my brain; the terror of being sure there is something outside my window or watching me from behind a cracked door, or that I’ll fall into the floor and be trapped there forever. I survive, and I keep going, and there is still no one like me in the horror I see. I survive every day I manage to get out of bed, but somehow, people like me aren’t allowed to be heroes.

Where is the horror with a protagonist who was paranoid way before anyone was out to get them, who survives because they’re already scared? Where is the horror with a monster that feeds on fear and can’t get their claws into the hero because frankly, the real monster isn’t nearly as scary as what their own brain already does to them? Where is the horror that doesn’t play into the idea that mentally ill people have to be either a killer or a victim?

I want horror where a person can be mentally ill, and still be the one who rises up, takes on the monsters, and brings them down. I want to see us fight and win in horror movies the same way we have to in life.

Epilepsy used to be called the sacred disease because it enraptures people, taking control of them and sometimes bestowing visions that can be heavenly or hellish. It was the realm of oracles and wise men. When the seizures overtook people, they were touched by the Gods themselves. But over time, people began to fear it. It became a sign of witchcraft and demonic possession, and during the Inquisition epileptics were burnt at the stake.

Most of this is rooted in a lack of awareness. Movies and television get it wrong more often than they get it right. Ignorance causes shame and doubt, and makes it harder for people to relate to those with epilepsy, even with friends and family.

Getting my diagnosis as an adult was difficult. I was able to find comfort in the stories of my youth where people were not limited by their disability, and were fully active and respected members of their communities. Geordi LaForge from Star Trek, whose assistive technology and comprehensive knowledge was an asset to those around him. Tyrion Lannister, who embraced his atypical body, and was stronger for having embraced it.

When I first started having seizures, I didn’t know what they were. It wasn’t like in TV or the movies—no falling down, convulsions, or foaming at the mouth. It’s hard to find people like me in media. I’ve never really known anyone I could relate to in fiction.

Epilepsy is different from person to person. Sometimes it’s just an unstoppable jerking of the limbs that goes away for a few minutes. Sometimes it’s the inability to use language correctly. Sometimes you get trapped in your body, and lose the ability to move or interact with anyone. For some people, it brings hallucinations and visions, which can be rapturous or torturous depending on the content.

Professor X’s seizures in the movie Logan are a good representation of what it feels like for me.  It captures the inability to do anything but just ride the seizure until it fades. It freezes your world. For the first time in my life I had something I could point to and say “This is what it feels like! This is me!”

Talking about my epilepsy is a source of tension in my family. It is simply Not Spoken Of. It wasn’t until more than a decade after my diagnosis that I learned that I wasn’t the only one in my family with epilepsy.

My great-grandmother was humiliated by her epilepsy. At the time, few in Puerto Rico understood what triggered epilepsy, much less how to respond to someone in the throes of a seizure. It was considered shameful, something not discussed in front of children. My mother and her siblings never understood the source of my great-grandmother’s ataques until they were well past childhood. She believed her seizures were the will of God, and by taking her medication she was avoiding God’s will.

After her first seizure, my great-grandmother gave up cigars and dived deeply into evangelical Christianity. For her, it was an escape, a form of control. For her, prayer and her deep devotion to God gave her release from epilepsy’s trap.

Science fiction is my release. It’s helped me through periods of abuse, homelessness, and my diagnosis. The people in those stories found ways to rise above their problems. Playing tabletop games gave me a sense of control. As a player, I controlled my own actions. As a storyteller, I controlled the story myself. It helped me to understand that sometimes, situations come up that we can’t avoid, but we always have choices in how to handle them.

Epilepsy is a thief of a disease. It robs you of your time, energy, and control. You are not yourself when you’re having a seizure. My great-grandmother fell into convulsions and lost her sense of self, a condition that sometimes would last a whole day. Epilepsy traps me in my own body.  I see, hear, and think at my normal speed, but my body slips from my control. It limited my horizons, robbed me of opportunities and stole my dreams. For a while I thought I was dying. I had no control, and no answers. I spent time coming to terms with the idea that my life could already be over and there was nothing to do.

But after I was able to understand the limitations of my epilepsy, I was able to do so much more. I took up ballet, I had a painting headline a gallery show, and I travelled to Europe. It was while I was travelling that I met the man I would marry and start a family with.

My diagnosis set me free in a way that I had never expected. Once I had a name for it, I had a path. Once I had a path, I had a destination. Once I had a destination, I had a goal. Epilepsy does limit your life, but it’s more like the borders of a map than an obstacle in your path. It helps to define the territory you can travel.

I found a renewed sense of purpose once I had come to terms with those limitations, I found I had more options than I had believed before my diagnosis. I put aside my life of fear and embraced the opportunities that came my way.

Once we were prophets. Maybe we can be again.

It’s the middle of the big Wakanda fight scene. Thor and Captain America banter about haircuts, M’Baku and Okoye crack skulls, and for a moment, Rocket Raccoon meets James Buchanan “Bucky” Barnes. The audience is ready to laugh the second the raccoon eyes up the veteran. They know what’s coming.

Rocket compliments Bucky’s prosthetic arm, asks to buy it, and the audience tenses up.

Bucky says it’s not for sale and returns to battle.

Rocket mutters that he’ll steal that arm.

And the audience laughs. I don’t. I’ve lost count of how many times I’ve been wooed by Infinity War’s frenetic action and cosmic scope only to be yanked out by a joke or tragedy that’s at the expense of a disabled character. It feels like a gate built out of my own experiences, and the shared experiences of so many disabled friends who’ve been treated as pity cases and jokes.

Infinity War is a staggering achievement of crossover cinema. It’s the 19^th Marvel Cinematic Universe (MCU) film, referencing and continuing the stories of characters from across the decade of Marvel’s blockbusters. Vision ponders committing suicide for the greater good by asking Captain America why he once plunged into the Arctic Ocean. Gamora forces Peter Quill to take her seriously by making him swear on his mother. These moments are more powerful than most of the uses of continuity in the characters’ own series.

But when it comes to disabled characters, that continuity is wielded carelessly. They exist to suffer or be laughed at. In the greatest crossover in cinema history, disabled people are expendable.

War Machine

James “Rhodey” Rhodes is the straight man to much of Tony Stark’s comical narcissism. In Captain America: Civil War, Rhodey once again fought at Tony’s side in an attempt to lock up Bucky. In the melee, Rhodey wound up paralyzed from the waist down. Both that moment and Rhodey’s few later appearances in the film were all about humbling Tony. Tony’s feelings mattered more than Rhodey’s entire existence. It was a problem that intersected with the MCU’s long-running issues with people of color, and part of why Black Panther was so important.

In Infinity War, Rhodey gets one moment of relevance. He Skypes with General Ross, who is the very vision of patriarchy and military excess. Ross, Tony, and Rhodey used to be on the same side. Now Ross chides Rhodey for changing his mind.

Rhodey gestures to the mechanical leg braces that allow him to walk and says he paid the price for being on the wrong side. He uses the braces to “stand up” to the hologram of Ross, embracing a masculine stereotype. He’s proud of his punishment.

Disability is not a price you pay for being wrong. If you’re disabled, people will tell you that it’s a divine plan, or that it’s the result of your laziness and lack of ambition. Most of my own disabilities are the result of medical malpractice, not a moral failing on my part. We are not paying a debt by living.

Black Widow and Captain America interrupt this moment, and the movie moves on. Rhodey never corrects this horrible message. He never matters again. He was only included so that his disability could augment how righteous the abled heroes are.

Nebula

Nebula’s arc in the Guardians of the Galaxy films is one of trauma. As a child she was always pitted against Gamora by their abusive father and Infinity War’s main villain, Thanos. Every time Nebula lost a fight, Thanos cut off a piece of her body. In an echo of Rhodey, her disabilities were supposed to be representation of her mistakes. Now her adult body is mostly comprised of prosthetic parts. She’s a ball of mutilation and anger issues.

My favorite part of Guardians of the Galaxy 2 is Nebula reconciling with Gamora. They have an over-the-top fight and finally spare each other, recognizing neither of them is the real problem. Thanos is. It’s sad, but in 2018 we still need reminders that the villain is the villain, not the people so hurt by him that they didn’t stop him.

The abled members of the Guardians begin Infinity War by running a mission and ogling Thor. They banter, they angst, and prepare a big fight scene against Thanos. They are real characters in this movie, in contrast to how Nebula is handled.

Nebula isn’t with the Guardians. She’s introduced into Infinity War as a failure. Thanos has already captured her. Her prosthetics, which mean mobility and freedom to real disabled people, are pulled apart to keep her helpless. The sight of her body splayed like so many Jenga pieces is perhaps the most viscerally upsetting single image in the movie. Then Thanos tortures her.

For a scene, Thanos is a stand-in for every sadistic physical therapist I’ve ever had. He reminded me of the surgeon who told my 13-year-old self that I didn’t need anesthesia for my biopsy, and then, with his scalpel inside my arm, chastised me for crying as his assistants held me down. These are not the things you want to think about during a popcorn movie, particularly not when the character never accomplishes more than crying. Nebula has more grunts and cries of pain than she has lines in this movie.

That’s because Nebula isn’t her own character in Infinity War. She and her disabilities are plot devices to further Gamora’s sympathy and story. Thanos isn’t even really torturing Nebula—he’s really torturing her sister by making her watch.

Gamora is the character.

Nebula is a disabled prop.

Like Rhodey, once Nebula has served her purpose for the abled heroine, she’s gone. It’s easy to forget she even survives the finale while standing behind Tony Stark.

Contrast that with Jim Starlin’s original 1992 Infinity Gauntlet comic, the inspiration for this movie. There, Nebula steals the Gauntlet from Thanos and begins his downfall. You can only hope that’s still to come, but you doubt it.

Thor and Rocket Raccoon

Rocket Raccoon has bothered disabled viewers since the first Guardians of the Galaxy film. His running gag has always been that he loves stealing prosthetics from disabled people. Is this an arm or a leg? Did he need it for an escape plan? Nah. Robbing amputees is just his hobby.

The audience always laughs, and I always feel kicked out of the movie. The director, writer, actors, and abled audience have this happy conspiracy to enjoy disability at the expense of my friends.

In Thor: Ragnarok, Thor lost an eye almost nonchalantly, not even pausing to reflect on his injury in the race to stop Hela. It was an awkward moment in a movie that’s mostly so funny. Was it a Norse cycle in which, having taken Odin’s place as the leader of their people, Thor had curiously come by his father’s disability?

It turns out that Thor actually lost an eye to set up a bonding moment with Rocket Raccoon in Infinity War. The two already got along and had a heart-to-heart about Thor’s habit of losing everyone he loves.

Still, Infinity War tosses in a scene where it turns out Rocket stole a prosthetic eye from someone and gives it to Thor. Neither of them cares who he stole it from. Thor pops it into place, and presto, Chris Hemsworth is handsome again, I guess because there was such a shortage of two-eyed hot men in this movie. His disability is erased. Perhaps once or twice you notice his eyes are different colors.

I immediately made mental notes of friends who I had to give a heads-up about this. I warned them because if you’ve lost an eye, this scene is not great. It’s a gross distraction from the charisma and determination of Hemsworth’s Thor, who has become one of the most lovable characters in the entire MCU.

Earlier in the movie, almost the entire Guardians of the Galaxy had a crush on Thor. He was supposed to be desirable while disabled. But they don’t let him stay visibly disabled because they know that’s not appealing to the audience. In this movie, visible disabilities are for people like Rhodey and Nebula—people who don’t matter.

Then Rocket says the eye was probably dirty and Thor should’ve washed it. Thor’s injury is resolved in a bad punchline.

The audience always laughs.

Bucky

Despite being central to the plot in Winter Soldier and Civil War, we never see Bucky’s mental illness dealt with. At the end of Civil War, he’s tossed into a Wakandan meat locker. We’re told the Wakandans will science him until he’s better.

He stays there until a post-credits scene of Black Panther, which establishes that his mental illness was erased off-screen. We don’t get a single minute of therapy or treatment. His decades of being serially tortured, abused, and forced to harm others for Hydra don’t matter. He is calm and conditioning his hair.

If you’ve been to trauma support groups, or A.A., or helped someone in therapy, you know the MCU has cut out the heart of Bucky Barnes. All of his growth is absent, and anyone who could have used the sight of a hero going through that is clearly not welcome in this fantasy. Our society hides the mentally ill, either in institutions, or in increasingly criminalized homelessness. So many veterans die without support.

This erasure is Bucky’s context in Infinity War. We get a brief glimpse of him contentedly farming in Wakanda with one arm. He seems as happy as he’s been since he was double-dating in the 1940s. Then T’Challa arrives, plunks down a weapons-grade prosthetic arm, and tells him to go fight. That’s enough off-screen healing for him. The arm is necessary to make him look “whole,” and to be wholly capable of violence. Because the movie is rushing to fit everything in, Bucky barely consents before T’Challa basically treats him like Hydra used to and sends him to battle. Bucky is still a weapon.

Bucky meets an end Hydra wouldn’t have minded: he dies with a snap of Thanos’s fingers.

All that work off-screen, all that trauma, and he’s gone.

Stephen Strange, whose controversial movie nevertheless was the MCU’s best attempt yet showing a disabled person attempting to recover their sense of purpose, also dies in that moment.

Falcon, who ran a therapy group for soldiers with trauma, dies in that moment. Falcon dies, and Rhodey walks right past him in an accessibility device.

Disabled characters should die in Infinity War. This movie kills half the universe; if none of us died, then we’d all be erased from relevance inside a protective plot bubble. If the ending of the movie works, then we’re angry for Bucky in the same way we’re angry for T’Challa and Peter Parker. Thanos winning is supposed to be upsetting. It’s Empire Strikes Back times infinity.

It’s a slap in the face because of everything else Bucky has been through, and how little Infinity War has thought of every other disabled character it has.

The MCU’s failure isn’t intentional; it’s from the lack of intention.

If Disney doesn’t grapple with these things, then it won’t get better. It’s why the rumor that Captain Marvel will be the “schizophrenic patient struck by lightning” mentioned in Dr. Strange’s movie worries me. I don’t trust the creative process of the current MCU to do justice to schizophrenia.

This isn’t about one movie, or the first movie in a two-parter. It’s about a decade of movies. Tomorrow’s another sequel. There are disabled consultants and disabled screenwriters who would love to help shape a more inclusive MCU. There are millions of disabled audience members who would be touched by better representation. All we’re asking is for Marvel to care.

Disability happened to me in an instant. One moment I was able, the next I was broken from the ribs on down, the result of a horrific car accident. But I was fortunate; I received excellent care from the first responders to my amazing surgical team to the dedicated physical therapy, occupational therapy, and nursing staff that comprised my caregivers for the three months I spent non-weightbearing. I was fortunate that most of my family survived, and that we had the love and support of many friends and our community. I was fortunate to have a body healthy enough that I recovered most of what I had lost.

Yet, that good fortune and my recovery is plagued by negative emotions. Frustration, because having been born able-bodied I can remember what I lost. Anger at what my body, as encouraging as its recovery has been, is no longer able to do. A sense of sadness, of loss, because the thing is I can’t really remember what it feels like to walk up the stairs without discomfort. It was through this able to broken to healed-but-never-the-same process that I connected with a character and fully felt like I saw a part of myself in a story.

As a reader, I first found Joe Abercrombie’s “The Blade Itself” and Inquisitor Sand dan Glokta when I was still able-bodied. I enjoyed the book and the character then, but it wasn’t until I came back to it as an able-turned-disabled person that I felt like I’d found someone I could relate to. Glokta’s morbid sense of humor, his bitterness both at himself and the world post-injury, the outbursts of anger, irrational as they are, and him not caring? That was me, especially in the early years after my accident when I was more inclined toward anger than annoyance. I bonded with Glokta all over again on the first page we meet him, in our shared loathing of stairs, our shared having taken for granted bodies that could skip up or down the damned omnipresent things without a second thought. “And down is worse than up, that’s the thing people never realize.” So, so true. He presents at first like he might fall into the “angry because I’m disabled” trope, but there’s more to the character than his disability, and his anger is multifaceted. He has good days and bad days (and he can’t be bothered to be your inspirational hero), with gallows humor to get him through. I recovered more than Glokta did, but the frustration when his body can’t do what he wants, the longing to be strong and able again, is a connection I don’t share with many characters.

But, I also feel guilt. I struggle with calling myself disabled, often defaulting to “less than abled.” Like I shouldn’t say I’m disabled anymore because in many ways I got better. My disability has become invisible over time as I’ve graduated from using mobility aids and the surgical scars are hidden beneath clothes. And, I’m glad; it’s easier to get around with both hands free and on my own two legs. I can hide my disability by avoiding situations where it would become noticeable. I can pass off my difficulty in kneeling or standing or sitting with bent legs for long periods of time by saying I have bad joints. That isn’t really a lie. But my experience is representative of only one side of disability, the acquired disability end, and I am only one person. The guilt I feel over calling myself disabled isn’t only a fear of rejection, but also a fear of appropriation because I do long for the things I’ve lost—to be able-bodied again. While that may not be unique to me, I struggle with wanting to tell my story while also respecting that the disabled community is not a monolith.

As a writer, the idea for “Contractual Obligations,” coming this year from Cast of Wonders, was born in those long months spent stuck in a bed, robbed of my independence, unable to get food or wash my hands or use a bathroom that wasn’t a bedpan. The story built itself during the nightly shots of blood thinner to stave off blood clots from my lack of movement. As I lay in bed, my legs strapped into a machine that bent my knees to break up scar tissue, the question “What would you do to get back your legs?” played in my head. It hounded me as I walked for the first time, hands gripping the parallel bars as my broken femurs and pelvis readjusted to my weight. While I went through basic balance exercises in PT and got annoyed because this shit used to be so easy, and realized that as great as my progress was I would never be who I was pre-accident. And thus, the story came to be. I wrote it and loved it because it was an outlet, but I worry because in a way it is also a cure narrative. At its heart it’s a story about an able-bodied person who doesn’t want to have changed, to feel less than what she was. In a sense, it is me.

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.