When taking your first Fiction Form and Technique class, you can pretty much count on three things: half a dozen stories involving an “epic” party in high school, one to two overly-opinionated, Hemingway-worshiping students who totally know more than the professor, and one noir story where the murderer was the drunk detective the whole time. My first short story ever submitted was a Greek Myth Sirens spin-off that ended in suicide—not great.
A wonderful professor I had during undergrad used the phrase “first exit choices,” meaning your story’s plot is metaphorically driving down a highway and suggested we skip the first five exits, or rather ideas, and go to sixth, seventh, or eighth exits. By the time Fiction three rolled around, my classmates and I were doing just that—expanding ideas, sharpening plots, and being as weird as possible in all the best ways. Something I’ve noticed, which can happen in professionally published forms of writing too, was the continuation of writers improperly capturing disability: writers using disability as a plot device, prop, and/or metaphor to push the narrative forward.
What I don’t want is to deter writers from including disabled characters, but to bring awareness to the possible ableist prose that often ensues when they do. We live in a time where intersectional activism is extremely prevalent, and while I loved the advice to exclude racist dialects and sexist tropes I’d received in class, I didn’t hear much advice when it came to representing the disability community. It’s not that my classmates or professors are purposely enforcing ableism, but rather our society doesn’t talk about this particular –ISM as much as it should.
So how can you be a better disability-inclusive writer, you might ask? For one, your disabled character doesn’t always need an origin story. When writing your able-bodied character, you don’t always include their birth, right? It’s just the same with your disabled character, they were born, and now they’re tooting around. It’s not always by car crash, they’re not always in a mental institution; and no, they wouldn’t rather die in the end of your story than be disabled.
If you do want to explore disability activism, maybe research important issues that affects their community (and ours for that matter):
ADA (Americans with Disabilities Act)
Disability involving Veterans
Disability represented in pop-culture
Sometimes, when creating a character, (and this goes with writing any minority) ask yourself, “am I appropriating?” or “am I stigmatizing this character?” For example, creating disabled characters who are bummed about their disability, or characters who are bummed about having disabled children only propagates the stigma that disability is a bad thing. Creating strong disabled characters is just as important as making differently raced characters in any form of art.
Once you start acquainting yourself with disability activism you can’t not see tropes that are embedded in pop culture’s representation of disabled characters. As a comic book and general action hero narrative lover, I’ve noticed how most of the villains are assigned with disabled elements: A missing arm (Klaw), a breathing condition (Bane), mental illness (Joker) or exterior differences (Freddie Kueger). Now, I’m not saying there aren’t any disabled superheroes, I mean look at Dare Devil, Finn when he loses his arm, Luke Skywalker, Cyborg, or Oracle, but even those are widely debated characters that teeter within the rhetoric of the disability community because of their unrealistic representations of disability. My point is, if you’re into creating graphic novels/comics, try to not to default your villain as disabled, whether it be exterior, physical, or mental, or balance it with a disabled superhero, sidekick, etc.
Lastly, if you are or aren’t including a disabled character, try and avoid ableist language by knowing the origins of words. Look, we are writers and we love words, so why not do a little more research in the language you are choosing to fill your art with? For example, if you’re writing a poem about yourself, and you’re going through a tough time and feel fragmented, don’t use words like “My body lay still and lame.” The word “lame” is a derogatory term used against people with physical disabilities. And while you might not think that word is offensive, people with disabilities do. There are so many other words, people!
There is a reason we writers will go through three, five, ten drafts when working on a piece of work. We’re all driving down the same highway, and our destination is to create a well-rounded, interesting piece of work. Why wouldn’t you or I want to create an inclusive story, poem, graphic novel or whatever medium, that resonates in a powerful or fun way?
Paralysis is so often a metaphor. A simile to express shock or fear. It is a word you use, but you probably don’t mean it the way that I mean it. I mean to say my spinal column was damaged after my six-year-old body jackknifed during an automobile accident and that was the last moment I felt the skin below my chest or moved my legs of my own volition. Unless you count feeling my skin with my fingers and lifting my legs with my arms to move them where I would have them go. I do count this. Do not discount this.
I liked to write as a child. My words took me everywhere my body could not. I lived lifetimes amongst the stars. I visited the depths of the oceans and made my home in Scottish castles. I am the first person to set foot on Mars. I was a writer, my family told me.
My high school guidance counselor asked my mother if perhaps I would consider a career in radio. No one would have to see me. No one would have to know. The failures of my body would not matter. I could transcend my physical form through language. And in the beginning were my words and my words were with me but they were not me. They were only a part of me.
I fell twice this year exiting the shower. I almost didn’t call for help. My words failed me. My legs were twisted, my strength dwindling, my abdomen sore. My body threatened to break if I lost the half-grip I maintained on my chair, suspended. I couldn’t pull up. I couldn’t fall down. Instead I called out. My friend came. She raised my naked body from this in-between to its proper place again, seated. I never touched the floor. I don’t know if my tears did. You can’t understand. But let me try to explain myself to you.
I hold fast to the arms of my friends so I do not lose my balance. I read the news and I imagine the end of the world. I know my body has no place in it.
Mine is not one of those paralyzed bodies that found a way to do all things, extending itself beyond its limit. My rotator cuffs are worn and they ache. My legs spasm, seemingly without cause and without remedy. My fingers grasp and stretch and feel, even if what they feel is pain.
Paralyzed in the same manner, in the same second as I, my brother James’ body fails him too. He told me about a game he played with his friends. Everyone in the room was to select the person whose life they would never want. They all pointed at my brother. They pointed at the body that would ruin them. It was supposed to be a joke.
I’ve hated my body more than you’ve hated my body. But I need you to know something. My body is not an anchor or a prison. My body is not a metaphor. You don’t get to call it a metaphor. I am the only one who gets to do that.
Look at me. My life is not a ruined life. My brother’s life is not a ruined life, even though you don’t want it. My flesh is numb, but it is still here. I am beautiful even when you don’t believe it. Even when I don’t believe it. I may be the person you carry from the burning building, down flight after flight before the walls crumble in on us. You may want to discount me. But I am alive. My lungs fill with air and my chest expands and my palms press into the tread of my tires and I keep pushing. My body propels me forward in ways my words alone cannot.
My whole diaphragm shook with laughter until tears fell the day my father and I staged pet robots for a scavenger hunt photo op. In 7th grade, my arms wrestled the boys and won, pinning their wrists to the desk. My mouth savored sweet cherry after sweet cherry until my stomach churned, overfull. My knuckles grazed the walls of the Colosseum in Rome, making me a part of its history. My head was covered with prayers and hands anointed me with oil before a surgeon spread my back open like a book. My body hurtled through the heavens in the corkscrew curl of a rollercoaster and all I remember thinking is This is delightful. My face was kissed by Conan O’Brien at a taping of his show, beloved by me since I was girl. He told me I looked really beautiful and I believed him. My older siblings carried my body in my bathing suit across the sand and I floated in the ocean, waves rolling over my shoulders. At Epcot, the Mission: Space centrifuge spun, compressing me, simulating a force of gravity two-and-a-half times beyond that of our Earth, holding me down until the pressure relented and I was not sick like my cousins were; my body was well. It understood how to break free from the atmosphere even while their able bodies did not.
I am not nothing. I am more than the words you are reading. I am somebody, not nobody. A body. My body. The only body I have. It needs so much care but has given me so much in return. Inconvenient and alive. I hate it and I love it and I wish I were just my words but I am not and I am so grateful to be more.
Upon finishing Jojo Moyes’ popular novel Me Before You, I was heartbroken. But it wasn’t “a heartbreaker in the best sense” as promised by the New York Daily News. It was the kind that left me feeling helpless and sick—literally, like I might throw up, or punch someone.
A friend loaned me a copy, mentioning that the book dealt with disability and love. I forgot about it for a couple of weeks, until I saw a preview for the movie, released this month. The story features a young woman named Louisa Clark, whom the back cover describes as “an ordinary girl living an exceedingly ordinary life.” Louisa finds work as a caretaker for Will Traynor, a man who becomes a quadriplegic after an accident. From the preview, the two appear to fall in love, and yet Will also seems to be contemplating assisted suicide.
As a quadriplegic myself, paralyzed from the chest down since the age of 6, I value writing that subverts common disability stereotypes. I willed this book not to portray a spinal cord injury as a fate worse than death.
“Please,” I prayed, “Not another Million Dollar Baby.”
And so I read. In the novel, after being sexually assaulted at the age of 20, Louisa barely ventures beyond her hometown. Will, a rich, handsome businessman, spent his life prior to the accident engaging in extreme sports, traveling the world, and bedding beautiful, leggy blondes.
While getting to know Will, Louisa learns that he plans to commit suicide at the end of six months. She and his family are determined to prevent this. Louisa makes it her mission to show Will how beautiful and good life can still be. They attend concerts, go on picnics, visit art exhibits, and even take a dream vacation together. Through these excursions, Louisa and Will eventually fall in love.
During their last night at a beach resort, Louisa tells Will she wants to spend her life with him. But he rejects her proposal; he doesn’t want to be a burden to her and he hates living with his disability. He says,
You don’t know me, not really. You never saw me before this thing. I loved my life, Clark. Really loved it … I led a big life … I am not designed to exist in this thing—and yet for all intents and purposes it is now the thing that defines me. It is the only thing that defines me. (325)
These words, written by an able-bodied woman, are weightier in the mouth of a disabled (albeit fictional) man. Smoke and mirrors perhaps, but the illusion is effective enough for the book to be a New York Times Best Seller for 76 straight weeks and counting.
In the end, Will goes through with his suicide at a clinic in Switzerland, freeing everyone around him, including himself, from the burden of his disabled flesh. And although they are unhappy, Louisa and Will’s family come to respect his choice. In fact, he convinces them that it is the only choice he has been permitted to make for himself since his accident. As a final act of love, he leaves his fortune to Louisa. The book closes with her sitting outside of a café in Paris, finally inspired to live her life to the fullest.
Ultimately, Moyes uses Will’s suicide to transform him into a romantic hero and the able-bodied masses call it beautiful.
Numerous essays and blogs criticizing this portrayal of disability in Me Before You already exist (including this especially comprehensive critique), but there are two important points I would like to make.
First, all of the characters who try to convince Will to live make the argument that life can be good in spite of his disability; I would contend that my life is often good because of my disability. Second, this book argues that Will lived a big life and simply can’t accept a smaller one; I would contend that some of the biggest things that life has to offer at first appear to be small. These apparent blind spots on Moyes’ part inhibit her from crafting a more nuanced look at disability.
While most of the novel is from Louisa’s point of view, multiple characters receive their own chapter-long perspective shifts, including Will’s mother; his father; his medical caregiver, Nathan; and Louisa’s sister. Notably absent from this list, however, is Will himself. Moyes never bothers to put the reader inside of Will’s mind, instead largely shaping him through the interior thoughts and opinions of the non-disabled people around him. This, to me, is a grievous defect.
Therefore, to remedy this and to explore the aforementioned blind spots, I wrote my own brief, alternate ending to Moyes’ novel from Will’s point of view.
NOTE: This alternate ending takes place during Louisa and Will’s final night at the beach resort after Louisa confesses her feelings to Will and he rejects her, announcing that he is still planning on going forward with his suicide.
“I wish I’d never met you.”
Those were the last words Louisa said as she stumbled away from me on the beach. Drunken strangers found Nathan and brought him to me, and he helped me to bed. He cleaned me; he changed me; he tucked me in, as though I were an infant. The only thing our routine lacked was a bedtime story. And then he went to his room.
Now, propped up on my right side where he left me, I lay still (what else was I going to do?) and thought. Thinking was pretty much the only thing I could do by myself these days.
The storms from the previous night left a breeze in their wake and I could feel the cool air through the crack in the balcony doors. My nose itched.
Bested again, I thought. You’ve won this time, Itch.
My eyes were heavy, but I fought sleep. What was it she said to me that night at the wedding? That I never would have noticed her if I weren’t disabled? She called herself “one of the invisibles.” And she was right. I never would have seen her, in my other life. We never would have met. Louisa was only made visible to me after—no, not after, because of—my accident.
These seemed to be two incongruous concepts. On one hand, there was the life I lost, filled to the brim with ocean vistas, European cobblestone, and steep mountainsides that left my whole body screaming for rest and oxygen, while still craving more exertion. In those moments, I knew every single cell was alive and active. On the other hand, there was Louisa. Louisa in her red dress at the concert. Louisa at the wedding, her arms draped around my neck, her fingers pressed into my skin as I spun us around and around on the dance floor, her perfume-like joy spinning along with us. There was the man who could walk; there was the man who loved Louisa. These two Wills could never occupy the same universe.
On the beach, I could still hear the other hotel guests carousing. A woman’s high-pitched laughter at some inaudible joke. The crackle of distant fireworks. The shrieks they provoked. I wasn’t sure if I could actually taste a hint of acrid smoke in the air, or if it were just my imagination—my mind’s nose, if that were even a thing—but the effect was convincing enough.
Louisa’s life was so small compared to my old life. She hadn’t done a fraction of the things I’d done. While I was staking my claim at the top of Mount Kilimanjaro, the roof of Africa, she laid claim to nothing more than a closet-sized bedroom in her parents’ home and a job serving tourists at a second-rate café. It was my life’s purpose to see, to do, to conquer. And I conquered everything.
“Where there’s Will,” my friends used to joke, “There’s a way.”
Six months, I’d promised my mother after my failed suicide attempt. In that time, Louisa and my family tried to fill my days with excitement and action—a poor man’s facsimile of the life I once led. Although they were simply trying to be kind, pretending my life could be what it used to be was almost more maddening than anything else. I needed them to acknowledge that although some form of my body survived, Will Traynor was dead and would never be coming back. Trying to recreate my old life would never work.
And yet, there was Louisa.
I pictured her now on her side, asleep in her bed, knees pulled up high, clutching a pillow in her arms. Perhaps she cried herself to sleep after running from the beach to her room. Perhaps she was still awake, clenching and unclenching her hands, cursing the day we met. The thought pained me.
Louisa, the once-invisible-now-visible girl, came to love me only if I crossed that rainy street at the exact right moment two years ago.
And if Louisa herself were once invisible to me, were there other things invisible to me as well? Perhaps there was a whole host of unseen things that might now be seen. Perhaps I was so determined never to let the world pass me by that I passed the world by.
Louisa, with her crazy shoes and her black-and-yellow striped tights, lost to me if not for the accident. Entirely too small for me to see.
When did I decide that small was inherently less? I wondered.
I must have been young. Even as a child, my parents’ wealth afforded me such extravagant possibilities—winter vacations skiing in the Alps, weekly equestrian lessons. I never bothered with anything that seemed ordinary.
I spent so much time criticizing Louisa over the past six months for all of the things she was afraid to do, jealous that she could still live the big life I lost—if she would only seize it. But was I guilty too? Was I afraid to live an ordinary life?
The first time she shaved my face clean, her fingertips grazed my skin, adjusted the fold in my collar. She barely touched me while she worked. At the time, this was just more evidence of my own physical failings. I couldn’t even shave my beard without help. But there was a measured way she wiped my face when she was done, with the same care one might reserve for handling something precious. Would I have ever let a woman touch me like that if I weren’t disabled? Did I invest in obvious thrills at the expense of humbler joys—the ordinary that only through experience might reveal itself to be extraordinary, just like Louisa herself? My wealth and privilege allowed me to see everything I might ever want to see—except what was right in front of me.
Alone, in that dark hotel room, the noise from the beach finally quieting, I questioned for the first time whether all dependence should be counted as loss. Or was the breaking that took place more like a seed that must shatter completely before new life can emerge?
As this thought came over me, the faint rhythmic ticking of a leaky faucet kept pace with my pulse. For two years, I resented every single heartbeat. But now, there were entire days I didn’t feel like dying.
If the old me could scale a 90° peak, couldn’t I find a way to continue just a bit further? Would my own life be the one summit I never reached?
Louisa, my visible girl. What other things have I missed?
I bandied on for so long about how this was my choice to make. But the thing about having a choice is that you can also make the wrong one.
The somber blues of the night would soon be giving way to subtler tones. And those subtler shades would soon be giving way to sunlight that would break through the thinly veiled windows. When that happened, Nathan would come and dress me, and help me into my wheelchair, and I would press my good hand forward on the motor’s control and roll myself over the dense hotel carpet until I reached the lobby. Louisa would be waiting for me, unlikely to make eye contact, but my own eyes would stay on her. They would follow her even as she avoided mine.
How odd that only through the loss of one ability did I gain a new type of sight.
I couldn’t promise her forever. I couldn’t promise I wouldn’t choose to end my life before sickness or time stepped in. But I could give her at least six more months. Not to appease her, like I did for my parents, but because it was my choice to make.
These next six months, I wouldn’t live a shadow of the life I once had, trying and failing to revive the past. But perhaps there was new life hidden inside the smaller-seeming things if I were willing to look for it, and perhaps those six months would give way to six more, and those six to another, until they kept expanding and growing and my life would be big again and I wouldn’t need to keep count anymore.
I am in a wheelchair. It’s the first thing that people notice about me—unless, of course, they’ve been hypnotized by my haunting blue eyes. But excluding that surprisingly uncommon occurrence, those who focus on my disability might conclude that my life is more difficult than the average bear. But actually, sometimes, I have it too easy.
Strangers praise me for maneuvering my chair successfully in public without plowing down innocent bystanders or careening into walls; they praise me for smiling or laughing; they praise me for being able to maintain a job and my own apartment without parents to look after me, or they praise me for making attempts at humor, even if I use bottom-of-the-barrel puns or the spare Dad Joke.
“You’re so amazing,” they tell me. “You’re really just…something.”
I smile and say thank you. But inside, I don’t know how to feel exactly. When I articulate this ambivalence to friends, some tell me I should be angry. I’m being condescended to and, dammit, I need to make the person understand how wrong that is! Or else, they tell me I should be pleased, as the person is simply trying to be kind—and besides, my friends go on, maybe they’re used to people with disabilities who just can’t do what I can do!
Neither reaction suits me. Frankly, I don’t have the desire or will to be angry about every accidental slight, especially when such compliments arise out of a desire to be kind. Or perhaps people imagine particular tasks or good humor would be nearly impossible for them if they were suddenly in my wheels—I’m sure that would be difficult. But only at first. For me, everyday tasks in my wheelchair are simply everyday tasks. Should I really believe the most trivial of accomplishments are the exception rather than the rule for people with disabilities? Shouldn’t our assumptions err less on the side of being surprised by ability?
There is a flip side to this scenario.
At the Senior Awards Night when I was in high school, I took home three of the top awards. One voted on by my peers and instructors as that year’s Best Girl, one for Excellence in English Studies, and one for Excellence in Social Studies. Years of hard work were finally being publicly recognized! But that night, my friend, toting two of his own awards, said, “I mean, of course the girl in the wheelchair won the Best Girl trophy.” I looked to my then-boyfriend for support, but he simply laughed and said, “I mean, you know why they voted for you.”
They were teasing me, but beneath their smiles I felt a jab. I wanted to fight their claims. I wanted to remind them how hard I worked—that I was 4th in our class because I loved school and learning, that they couldn’t diminish my accomplishments with the suggestion that it was unearned simply because I am disabled. But my arguments died in my throat. Maybe, I thought, they were right.
That same year, I won a full-ride scholarship to an Indiana university of my choosing. As part of the application process, I was required to write an essay about any barriers to my education that I’d successfully overcome. I wrote about my disability and the number of school days I missed for health reasons. I wrote about the time the school administration tried to keep me from enrolling in the Honors block for fear I couldn’t keep up with its academic rigors. And I wrote about the encouraging teachers and mentors who called me special without it being code for handicapped.
Again, there were those who said the scholarship was given to me simply because I’m disabled—because I have a story to tell. But it’s not a story I parade around like a show horse when it suits me. My disability comes up again and again in my work because the car accident that left me paralyzed is the lens through which much of my life has been focused. It is an integral part of who I am.
A friend of mine recently told me she once opened the door for a woman in a wheelchair and the woman yelled at her for doing so, for assuming she couldn’t do it herself. Such a reaction is almost unfathomable to me, to repay kindness with rudeness rather than with appreciation or even a gentle correction. I never want to be like that woman; I never want my words to paralyze someone into inaction. I merely wish to acquaint others with one aspect of my experience.
I want others to know the questions I ask in regards to my life and to my writing that don’t seem to have good answers. Like how can I ever really “earn” something important when even the smallest accomplishments elicit praise? Or how many of the accolades I receive are simply because the bar for someone with a disability is so ridiculously low that even I could jump it? And even if those accolades have nothing to do with my chair, will there always be those who are ready to cast their doubts upon my worthiness?
When I wake up, at first I don’t remember—still in the fog of some delicious dream. But when I stretch my arms, there is no equivalent stretching of legs or toes; rather, I must lift my paralyzed limbs with my hands, placing my heels firmly on the footplate of my wheelchair, reminded once again that I am disabled.
This is a reality I cannot escape as I roll into the kitchen, propelling myself in this wheeled contraption that permits me some semblance of a normal existence. There awaits my cat, a creature so nimble he is able to hop on top of the fridge in two successive leaps, while I merely watch. Sitting. Always sitting.
My God, I think, I can’t walk.
I am forced to realize this again and again, as though I were in a real-life version of Groundhog Day or that one episode of every science fiction show that ever existed—you know the one. And as the new day’s sun reveals the tragic truth of my tragic situation, my only (admittedly still tragic) consolation is what a big damn hero I am.
I’m having fun with you. The truth is, dear reader, my disability is probably much more dramatic to you than it is to me. Perhaps you were even sucked in by the first paragraph, believing that’s really how I wake up each morning.
And thus begins another day as a disabled person…le sigh.
For me, the entire thing is a farce. Spending nearly 25 years in a wheelchair has given the concept some time to grow on me. I wake up, not regretting the shocking reality of my disability so much as regretting the shocking reality that it’s already time to get up for work.
In graduate school, I wrote a humorous essay about the perks of being disabled (sweet parking, no wait for roller coasters, being carried up and down stairs by strapping young gentlemen—you get the idea). But when my classmates read this piece, many mentioned its powerful, underlying pain. Another peer even told me of a friend whose mother committed suicide, and how her friend tried to make jokes to cover up the pain of such a tragedy and although she was no therapist, mightn’t I be doing the same thing?
When I reflected on these comments, I realized I wasn’t the one typecasting disability as painful. As a writer, though, this simple fact of my person is one that comes with a lot of baggage. The words ‘disability’ or ‘wheelchair’ or ‘car accident’ seem necessarily to imply ‘tragedy’ to many readers. Certainly, there are moments of my life that have felt tragic—that I have openly characterized as such—but I’ve found tragedy to be fairly unsustainable for long periods of time. It is not the whole, ongoing, or even most important truth of my life.
Being paralyzed is also enlightening and hilarious and, for me, completelynormal. And yet, too often, my normal days and my normal life are read as tragic days and as a tragic life because it’s too hard to fathom that a differently functioning body isn’t also an inherently worse body.
I’m still learning when and how to divulge my disability in writing. I know that such a revelation may color everything else I say, preoccupying my readers with what happened and when, wondering if I’ve recovered psychologically, wondering if they themselves would even be able to get out of bed in the morning if it happened to them. Or maybe just wondering whether or not my arms ever get tired. The simple truth is that disability has affected many aspects of my life, but often not in the ways you would think. And so I’m trying to learn how to communicate the different facets of disability that have nothing to do with tragedy. Or to show that sometimes, my wheelchair is merely a footnote to another story I’m trying to tell, as pertinent as my blue eyes or my long brown hair.
Oh, and for the record, until my consciousness is transplanted into a robot dragon’s body and I become Mecha-Ashley, my arms do get tired.