I was not born a superhero. I was born a mutant, and gifted a body unruly and strange. A twisted foot, a limp. A young girl who took her time to walk, a child who couldn’t dance as others did. My early surgeries, wheelchair, and crutches marked my childhood in the same way that spider bites and accidents have marked our comic-book and big-screen heroes, except without any of the attendant power. I did not develop superhuman coordination in response to lopsided hips. Didn’t find my eyesight sharpened or my hearing increased to compensate for less-than-stellar muscular performance.
Marvel: as a noun, a miracle or event that causes astonishment and surprise. Also, a wonderful story or legend. As a verb, marvel comes from the Old French merveillen, which means to be filled with wonder. The connecting verb is the Old French merveillier – to wonder at, be astonished.
Always the wonder, always the surprise. With superheroes, and then, also, with disabled people. Surprise when disabled people wheel down the street, when they struggle onto public transportation with a cane and walker, when they go to the movies, when they get groceries. All by themselves.
I don’t know how you do it, passersby have said to disabled friends of mine, wheelchair users, those with canes. If I were you, I would have killed myself a long time ago.
Surprise. People were surprised by the bearded lady at the circus, by the dwarf who danced atop the bear. They came in droves in the late nineteenth century to see the deformities of Joseph Merrick, forever known to history as the Elephant Man. In the sixteenth century, they came to the French court to see Petrus Gonsalvus, originally from Tenerife, Spain, who had a hypertrichosis universalis mutation that made him excessively hairy. Petrus lived at court as a pet of the French king, Henry II. He was taught to speak Latin and dressed in fine clothes. Catherine de Medici, the queen, found him a wife, also named Catherine. (Portraits of them, thought to have influenced the image of the Beast in de Villeneuve’s Beauty and the Beast, are still stared at in museums.) They had seven children, five of whom also bore the mutation.
His daughters were called monsters, marvels, beasts.
As a young girl growing up in southwestern Ontario, I found royalty easier to believe in than mutation, mutant though I was. Stories of princesses and kings were what I saw in books and on TV, and so I did not think about what it might mean to be a superhero, to tell that kind of story. Princesses were always perfect, and perfect was what I longed to be.
Superheroes required an entirely different kind of magic. It was easier to believe in the magic of fairy godmothers than to believe in the possibility of superhuman strength. Easier to believe that a girl might grow up and fall in love with a prince than to believe that that same girl might grow up into a body that might be considered beautiful, that did what she wanted it to do all of the time.
You walk like you have a pickle stuck up your ass, the children said to me at school. Pickle! Pickle! Pickle! What are you going to do – pull it out AND EAT IT?
Marvel: a comic-book universe. The franchise began in 1931 under the mantel of Timely Comics and rebranded as Marvel in 1961. The franchise oversees some of the most beloved superheroes and superhero teams in the world today: the Avengers, the Guardians of the Galaxy, Iron Man, the Hulk. Captain America. The X-Men. Spiderman. Deadpool. Dr. Strange. Thor.
Captain Marvel. She is a blond woman, young and pretty. Thin and stylish – someone who can wear a skin-tight armoured suit as easily as a baseball cap and leather jacket. She takes no prisoners, and after a brief beginning of uncertainty, mired in amnesia, makes no prisoner of herself. Once a fighter pilot, she now commands the space between the galaxies. Her name, when we first meet her, is Vers. She is not a princess, not exactly. She’s something else – something bigger, larger, more.
Captain Marvel, née Carol Danvers. The latest iteration of Captain Marvel, a character who dates back to the Silver Age of comics. Previously, all iterations of the character were male. As I write this, in early April 2019, the Carol Danvers version of the character is – according to a 2016 Vulture interview with Kevin Feige, president of Marvel Studios – currently slated to become the most powerful superhero in the Marvel Universe. (We are several weeks out from Avengers: Endgame. Tickets for the first screening of Endgame sold out within minutes.) I saw Captain Marvel right when it came out, earlier this March. I loved everything about it – the sarcasm, the power, the joy. How refreshing to see a woman delight in her powers that way – how gleeful, how astonishing, to see someone rejoicing in the death meted out by her hands. How unbelievably powerful to see Brie Larson, as Carol Danvers, look Jude Law’s Yon-Rogg straight in the face and say, I have nothing to prove to you.
What might it have felt like, back when I was ten, to say those words to my classmates and know that they were true?
But then, I’m getting ahead of myself. A superhero narrative – or a fairy tale – means nothing if there’s no adversity to overcome.
‘The ideology of ability,’ notes Tobin Siebers, ‘is at its simplest the preference for able-bodiedness. At its most radical, it defines the baseline by which humanness is determined, setting the measure of body and mind that gives or denies human status to individual persons. It affects nearly all of our judgments, definitions, and values about human beings, but because it is discriminatory and exclusionary, it creates social locations outside of and critical of its purview, most notably in this case, the perspective of disability.’
In Angela Carter’s short story ‘The Bloody Chamber,’ her gothic retelling of the Bluebeard fable, our young unnamed narrator begins the tale newly married to a much older French marquis. She doesn’t love him but is drawn to him nonetheless; she shrugs off her misgivings about his previous history – three wives, all dead, the latest gone only three months when our narrator meets him – and is drawn to his magnetism, his wealth, and her own seeming power over him.
‘When I said that I would marry him, not one muscle in his face stirred, but he let out a long, extinguished sigh. I thought: Oh! How he must want me!’
On her wedding day, the narrator, wearing her wedding ring (an heirloom first given to her husband’s ancestor by Catherine de Medici), is brought by train to the castle where her libertine husband lives. It is gigantic and hollow and huge, filled with servants who disdain the narrator but put up with her as they have with so many of their master’s whims. Their marriage’s consummation, transpiring in ‘broad daylight,’ awakens both her disgust and her desire: ‘I had been infinitely dishevelled by the loss of my virginity,’ she says. Yet her husband then informs her that he must leave on business that very night, leaving her with her ‘dark newborn curiosity’ and a ring filled with keys. The key to his office, the kitchens, the study. On and on and on until there is only one left.
‘One single key remained unaccounted for on the ring and he hesitated over it; for a moment, I thought he was going to unfasten it from its brothers, slip it back into his pocket and take it away with him.’
But the Marquis doesn’t do this. Instead, he asks his bride not to enter this one last room.
‘“Every man must have one secret, even if only one, from his wife,” he said .… “All is yours, everywhere is open to you – except the lock that this single key fits.”’
The husband leaves on his journey, and our narrator tries, at first, to distract herself with the rest of the castle. She is an accomplished pianist, a prodigy, and her husband has paid for the blind young piano tuner from a nearby village to come and take up residence at the castle solely to keep the narrator’s instrument in tune. They strike up a friendship. The boy is sweet and kind.
But our narrator, alas, cannot forget the room. She ventures down into the bowels of the castle and finds that last locked door. Inside it, she discovered the bodies of her husband’s last three wives. In her terror she drops a key into the pool of blood on the floor and then, after escaping from the room, discovers that the blood has stained the key.
Her husband, having completed his business early, is on his way back to the castle. Terrified at the wave of anger that she knows will come, the narrator finds herself abandoned in the castle, as the servants have left her alone – abandoned by all, that is, except for the lovely blind piano tuner, who stays with her to the end, a friend to be there with her as she meets her end at the hands of her husband.
But then, just in time, she is rescued. As the narrator’s enraged husband accosts her at the front of the castle, the gleam in his eyes and fanatical voice hinting at her final end among the bodies in his basement chamber, the narrator is saved – not by the sweet young blind man, who remains innocent and useless, but by her mother, who has hastened to her daughter out of a creeping sense of fear for her safety and who comes charging up the causeway to the castle on a horse, her pistol held high and aimed perfectly at the evil husband’s heart.
The Marquis dies; the narrator inherits the castle and gives it away to a school for the blind. At the end of the tale, she lives with her mother and the blind piano tuner in a little music school on the outskirts of Paris.
One doesn’t often think of a mother when one thinks of a superhero, but Angela Carter was good at subverting expectations – in certain ways, at least. Her blind piano tuner is portrayed the way that most disabled bodies are, on the screen and on the page. If not monstrous and evil, then pitiful and useless, sweet though their souls might be.
It does not do, it would seem, to be subversive in more than a few ways at once.
Steve Rogers, in the context of his life before World War II, could perhaps be said to have a disability. At the least, his physical reality at the start of his narrative as Captain America in the Marvel films is an impediment to progress; he wants to be a soldier, but his big heart is no match for the smallness of his form. His is not a body in demand – he isn’t useful by the standards of war and so he is overlooked, ignored, laughed at, forgotten. His desire to fight in the war is seen at best as cute, at worst as laughable. I can do this all day, he says at the beginning of his journey, as he faces off with a group of bullies in an alleyway. The bullies laugh because they know how society sees him – pitiful and useless, despite the vastness of his soul.
Look at you, they might as well be saying. Still wanting to be a soldier! (Still going out into the world, still doing things, still watching movies.) I don’t know how you do it. If I were you, I would have killed myself a long time ago.
‘From a narratalogical standpoint, it is not surprising that a genre so often associated with magical or extraordinary abilities portrays disability with such great frequency.’ Ann Schmiesing is speaking of fairy tales here. But she could just as easily have been speaking about the superhero narrative – which is, after all, nothing more than the fairy tale updated for the twenty-first century. Instead of a ball gown, a superhero’s cape. Instead of a pumpkin, a jet. Good triumphs here, too, and order is restored. A happily-ever-after with technology and modified bodies – a spider’s bite, then a genetic mutation – taking the place of a magic wand or spell.
As a disabled woman, I don’t know what it means to have your body represented onscreen in a way that isn’t somehow tied to magic. If the disabled body isn’t evil or mistaken (the hairy Beast, the green skin of the Wicked Witch, the disfigured face of Red Skull), it is always redeemed in the end – either through actual magic, as when the Maiden Without Hands has her hands grow back, or, as for many superheroes, through the magic of the compensation theory of disability. Daredevil loses his sight but develops supersonic hearing as a response to this bereavement; Charles Xavier of The X-Men loses the ability to walk but grows ever more powerful in the realm of the psychic mind. Jean Grey, a.k.a. Dark Phoenix, is ostracized and shunned because of how people’s marvelling turns into fear – but her powers are extraordinary, so in the end it balances out.
Steve Rogers doesn’t really have a disability in the strict sense of the term. His disability is only a metaphor – a slight against the unfair nature of the world in which he lived, a commentary on the preposterous idea of sending bodies off to fight wars in the first place. Even so, the serum that transforms him into a superhuman is a double act of erasure – erasure of the body that once was his and is no longer important, and erasure of the lived reality of those whose own bodies are seen to be an impediment to thriving. It is useful, for purposes of the superhero narrative, to see how the sheer force of Rogers’s soul is matched in the end by his physique. But what does it mean to know that Steve Rogers’s capacity for doing good is only reached once he is given a body that speaks to his soul’s power? What does it mean, as a disabled person, to watch Steve’s struggle and realize that your own potential will never be fulfilled in the eyes of the world – to realize that the world expects so much less from you as a result of your body that even the simplest of actions is treated like a galactic event? A broken body with a bright, pure soul. A superhero who is a superhero simply for getting up and getting coffee down the street. The disabled body is less; the disabled body must therefore be content with less, no matter how bright one’s soul might be shining.
Look at you, getting coffee, getting groceries, going on trips in an airplane. Pretending that you’re as able-bodied as the rest of us! It’s all just so inspiring.
At the beginning of Captain Marvel, Carol Danvers is disabled in several ways. She has amnesia and can’t recall her life beyond the six years immediately preceding her present. As the film progresses, we come to understand that she is also intentionally being disabled by her captors, the Kree, who are dampening her powers by keeping them artificially restrained.
But Carol, as most superheroes are wont to do, wrestles her way through to a happy ending. She does this both physically – through wreaking joyous, unrestrained havoc on her enemies – and emotionally, by distancing herself from the wild, perseverant machinations of Yon-Rogg and asserting her right to occupy her body and power in whatever way she sees fit.
I don’t have anything to prove to you.
I don’t have anything to prove to you.
I don’t have anything to prove to you.
I whisper the same thing to myself at night. The ‘you’ wears many faces.
Once, while I was sitting at my desk during lunch period in fifth grade, a student sitting beside me asked if I could reach under my seat to grab her pencil, which had rolled under my chair.
‘She can’t,’ my red-haired nemesis said behind me. ‘She’ll have to bend over and take the pickle out of her ass first.’
The rage that came over me was immediate and hot, overwhelming. I slammed my chair back into her desk so hard that it tipped her own desk over, pushing her so the chair she sat on teetered back on its hind legs. Wobbly and ready to collapse, exactly the way I felt. Her laughter was immediate, tinged with surprise and a sliver of terror. I heard the rest of the class laugh, too. Twenty-seven years later, I can close my eyes and hear that laughter exactly as it sounded on that day so many years ago.
I have never wanted to be a superhero, or a demon, something other than I was, as much as I did in that moment. To push the chair away from my desk and turn around and send that girl sweeping up through the air and back against the wall so hard that her skull cracked; to see her face split open upon impact and watch the blood and the brain matter trickle out down her cheeks. I wanted to stand over her as she screamed and grind her face into the floor. I wanted to turn an arm back toward the rest of the class who had laughed with her – who had always laughed with her – and do it to them, too. I wanted to see them cower, to see them lose themselves in awe. I wanted them to cry and scream and beg for mercy.
But I also wanted to be right to withhold that mercy – I wanted my anger to be justified, to make sense, to be understandable. To mete out punishment that was as clear and unbiased as that from a goddess. I wanted them to love me, to be terrified of me, to want to be me. I wanted all of this even though I knew, already, that in a few years I would go to a different high school and meet other people and move on from this part of my life. I wanted all of this even as I gasped in my rage and pulled my chair back up to its regular position and heard the girl behind me right her own desk and chair, her laugh shaky and hard. I wanted all of this through the rest of that afternoon as I stared at my desk red-faced and hot.
I wanted all of this through the next day, and the next, and the day after that one and the week after that. Limping through the hallways, limping through my life.
I have not stopped wanting all this.
Eventually I moved on to high school. I met other friends; life was indeed different. I travelled and lived in different cities and had lovers and felt beautiful and many of the things I had wanted came true.
I still have not stopped wanting all this. These triumphs, these vindications.
I go back, and back, to that day. I still want them to love me, even though I know it isn’t worth it – even though I know, more importantly, that my anger and rage at the unfairness of it all is directly tied to the fairy-tale/superhero lens through which I was already, unconsciously, viewing the world. If my world was unfair, surely that meant that things would swing back around eventually. Surely events would put themselves to rights, surely I would get my happy ending, too, even if it took a little while – because isn’t that what happened in all of the stories I was told? Life could be unfair but the world itself was a fair place. Be good, do good work, and you would either be rewarded or find the strength within yourself to put your world to rights. That’s just how it went.
I didn’t fantasize, back then, about what the world might look like if it actually was fair, if there was no need for superheroes at all. I didn’t imagine what life might have been like in a world without bullying. I took it for granted that the bullying would come, because I walked differently and occupied a different space and the world I lived in told me that was what happened to bodies that were different. It seemed easier to imagine a world where I had magical powers than a world where different bodies just existed together side by side.
The arc of the moral universe is long, but it bends toward justice. In an article for NBC’s Think on the famous quote from Martin Luther King – a quote that was itself inspired by a sermon by the nineteenth-century clergyman Theodore Parker – writer Chris Hayes notes, ‘The claim expresses a specific kind of informed optimism, an eyes-wide-open faith in humanity. Obviously, there is evil and trial and tragedy and hatred all around us and yet good, ultimately, does prevail. In the same way you can’t tell the earth is round as you walk on it, the trajectory of history is imperceptible as we struggle through it; but rest assured its contours are there.’
What happens, though, when your eyes have never been wide open in the first place? If you are a disabled person whose life has been one sidelined narrative after another – the disfigured witch or the monster or the dwarf, the ill child as beatific sacrifice so that her parents might see God and better themselves – where is the moral arc of your own story?
The arc of the moral universe bends toward justice, but sometimes that arc takes a preposterously long time. And in the world we’ve built, it’s easier for us to imagine that only superheroes – or perhaps fairy godmothers — can bend the arc for us. Everything else just takes too long.
What might it have meant to me – at eight years old, at ten – to know, deep in my bones, that I didn’t have anything to prove to the classmates who told me that I walked funny, who sneered at the way I ambled through class? To understand that I wasn’t waiting to become a princess or a superhero or even waiting for an unconventional rescuer, but instead was not in need of rescuing at all because there was nothing wrong with my body?
What does it mean for me now, at thirty-seven, to understand that the world still sees my body in this different way? As a disabled woman, I am at once hyper-present and completely invisible. My limp can at times be mild, and so I can sink into the background – an undercover agent in the able-bodied world, which is a kind of superpower and disguise that doesn’t feel quite right, although it feels better than those long-ago days at school. My disabled body, bereft of both fairy godmothers and superhero change, is either an object of pity or an object of tender fascination, but rarely something other than that. We are sad Tiny Tims or we are everyday superheroes, inspiring those who can walk and run just fine with our inhuman strength in completing the impossible ordinary. Shopping in our wheelchairs, walking with our canes. Navigating the world with our guide dogs and scooters and other supports – augmentations that aren’t sexy like the claws that come racing out of Wolverine’s hands or the arc reactor in Ironman Tony Stark’s chest or the impossible body that gets to be Steve Rogers’s, but are nonetheless that we use to make ourselves be more.
Building a world that either accommodates these tools or makes it so the tools aren’t necessary in the first place (why the need for a body that can fight wars if you build a world where there are no wars?) is a particular kind of magic, it would seem. One that still eludes us all.
A little over two years ago, I walked to work at the hospital one day and felt, as I battled the wind, the familiar words that pound through my head on a regular basis, in rhythm to my lopsided, hurried gait.
You don’t walk like everybody else.
YOU DON’T WALK LIKE EVERYBODY ELSE.
It’s not unusual, this refrain. I think it every time I hear my footsteps on the ground. I hear it every time I catch my body passing by a window. And yet, for some reason, that day something changed.
It’s not that you don’t walk like everybody else, the little voice continued. It was my voice speaking something I had known all along.
It’s that no one else in the world walks like you.
Why did it take me thirty-five years to realize this? Something to do with the way we tell stories – something to do with how we understand the body in both its regular variety and in what we perceive as its superhuman form.
‘We are capable,’ writes Tobin Siebers, ‘of believing at once that the body does not matter and that it should be perfected.’ And so we fantasize about eradicating disability in the same way that we fantasize about superheroes and magic – taking it for granted that the different body is aberrant in the same way superheroes are aberrant, gifts though these differences may be; longing for an act through which we will individually restore the world because systemic overhaul is too grand an undertaking. We’re all for subverting stories until the subversion requires a change in the real world that involves work, at which point we fall back to our regular narratives and look to the one who’ll come to rescue us. We take it for granted that the world is flawed and in need of a Captain Marvel to save it; we take it for granted that the disabled body is a bug in the system and do not, instead, celebrate its difference as a feature.
But my walk, my legs, my body – I am, all of me, a feature. (We are, all of us, a feature.) I have no fairy godmother because I have no need of one. I am not waiting for an unconventional white knight to come crashing up a causeway to my castle because I have seen the castle and its darkest heart and nothing in it scares me anymore. I have no need of rescue. I want more than the stories that posit the strong as those who survive and protect the rest of us. I want stories where people are not applauded for embracing difference but instead reshape the world so that difference is the norm.
I have nothing to prove to the world because the world has everything to prove to me. It is the world’s responsibility to make space for my body, my words, my lopsided gait – our bodies, our words, our ways of moving through the world – to hold my childhood dreams of being a princess and a superhero close and help me understand that there is no need to want to be either. To start telling different stories about a body that might just look like mine, and reshaping the world to fit them.
I am already enough. There is no need to be more.
It appears that there is a leg length discrepancy, but none specific has been determined. She has right ankle clonus, an extensor plantar response on that side, but the deep tendon reflexes otherwise are not increased. I measured the calves equally, but I did think that the right foot was smaller than the left. The arm and hand on the right side appear normal and facial movements are symmetric.
I reviewed the accompanying CT and MRI scans (which have been returned with the family). The initial CT examinations show asymmetric dilatation of the cerebral ventricles, the left lateral one being larger than the right. On cursory viewing, it would appear that the child has a mild left lateral ventricular dilatation in association with porencephaly.
Porencephaly: derived from the Greek, meaning ‘holes in the brain.’
However, historically there is no particular reason why she should have that problem. On further examination of the CT studies, and more particularly, the subsequent MRI views, it would seem that Amanda has an intraventricular cyst lying amidships in the left lateral ventricle. I believe that the latter scan definitively shows a spherical mass with an appropriate wall and which appears to be lying entirely within the ventricular cavity. That would seem to rule out the possibility of a porencephalic cyst which is usually juxtaposed to the ventricle and often doesn’t have a discrete ‘membrane.’
The importance of all of this is that the nature of this lesion be precisely defined. I would thus agree that Amanda requires a traditional ventroculo (or cyst to) peritoneal shunt, with the object being to place the ventricular catheter within the cyst cavity. If that can be achieved, then contrast should be run through the ventricular catheter in the cyst in an effort to determine whether it communicates with the rest of the ventricular system. There is the possibility that the cyst is isolated from the ventricle and also effectively occluding the outflow from the ventricle itself. In the event that the cyst can either not be cannulated, or is isolated, then it is quite possible that the ventricle will have to be explored and the cyst removed. The parents obviously wondered whether it might be neoplastic, but I believe that it is not and that it likely is of a congenital origin such as ependymal or arising from the solar plexus.
Neoplastic: of or relating to neoplasm or neoplasms. A neoplasm is an abnormal growth of cells that multiply and grow out of sync with the cells around it. In layman’s terms, it is called a tumour.
Ependymal: the thin lining of the ventricular system of the brain. The ependyma helps to produce cerebrospinal fluid, which helps to cushion and protect the brain, and acts as a reservoir for neuro-generation, that process by which nervous tissues and cells regrow and repair.
Solar plexus: a group of ganglia and nerves located in the abdomen, behind the stomach. The solar plexus, also known as the celiac plexus, is responsible for keeping the organs running smoothly and shifting the body’s metabolism in response to stress.
Thirty-some-odd years later, as I go over my doctor’s notes in the sun-filled warmth of my parents’ house, it isn’t hard for me to see poetry in here, and also a quiet kind of magic. A growth in the brain, deriving from the process by which cells regrow and repair, perhaps connected to another mechanism within the body that prepares an individual for disruption. A life that was meant to be one way but ended up growing into something else, carrying everything within itself necessary to weather the change.
But the fact that I have lived to realize and understand this is hardly an individual triumph, personal success and even superhero story though it might seem be. I am where I am because of my parents, who saw something unusual in that two-year-old’s walk all those years ago; because of Dr. Humphreys and the countless other physicians who consulted and operated and monitored me through the long years that followed my surgeries.
I am where I am because of the universal health care in my country, which ensured I could undergo neurosurgery without leaving my parents in lifelong debt. (Because somewhere along the way, someone with power decided it wasn’t fair for Jack and his mother to keep all of the wealth they stole from the giant.)
I am where I am because of those difficult days on the school playground, which taught me hard but valuable lessons about empathy and growth. (Because the goal isn’t to climb to the top of the social order and become like the Emperor, but to dismantle the social order in the first place.)
I am where I am because a nurse in my workplace saw the changeling in my skin and pushed me to get help.
I am where I am because I grew up a storyteller, and understood the ways that stories can move and shape us even before I understood exactly how to tell them.
I told the family, said my surgeon in those long-ago notes to my GP, that I would write you about this matter and they are going to think further upon the recommendations given to them.
Sincerely yours, R. P. Humphreys, MD, FRCSC
I am where I am today because of the community that carried me through.