A disabled memoirist on fairy tales, recovery, and finding a home far from home When I woke up after the accident, it felt like I had stumbled into a story that didn’t want me in it. The room was all white glare and hum, a place outside time. I could breathe, but below the waist there was nothing—no pain, no light, no message returning from the kingdom of legs. In the language of the old tales: a curse had been laid. A prince might sleep for a hundred years; I would wait for a word about whether I would ever walk again. The doctors spoke in riddles that weren’t meant to be riddles. “The MRI will show everything,” which is the kind of line a wizard says as he unrolls a map, not the answer to a human asking if his life is over. On the X-ray, my spine looked like a forest after a storm—one vertebra splintered, bone fragments like a scatter of broken twigs. Somewhere in another story a hero draws a sword from a stone. In mine, a surgeon would slide a titanium plate into my back. Different metal, different myth. What I remember most from those first weeks is the width of the distance. Not just the distance between bed and door or door and outside, but the distance between who I was and the place I now lived. Far and wide: that’s how the spell stretched. Even the simple acts—the sip of water, the turning over, the quiet cry—were quests. I learned that in some tales the hero refuses help and dies; in better tales, they accept a hand. I learned to take the hand. There is a fairy tale about a boy who descends to the underworld to fetch the living water. He walks past doors that promise sleep, past rooms full of feasts, and he does not stop. Rehabilitation is like that. A corridor that lengthens when you enter it. A set of parallel bars that look like a bridge to a country you don’t yet believe exists. You go anyway. You put your weight into your arms and lift. You fail. You return tomorrow. The spell loosens by single grains. I used to hate fairy tales, or at least what they did to bodies like mine. In those stories, a bent foot means a bent soul; a scar marks the villain, the outcast, the monster. Ugly equals bad, and beauty is the passport to a happy ending. They told us in school that the tales were symbols, not instructions. But symbols build houses in the head. You can live there long enough to forget there are other streets. When I became disabled, I learned how quickly other people moved me into those rooms: tragic inspiration, brave survivor, lesson in gratitude, the moral at the end of someone else’s chapter. What saved me—besides surgery, and time, and the stubbornness of the body—were the figures the old books also carried: not the kings and queens, but the helpers. Nurses with midnight voices, who could pass through a curtain like quiet witches and make the beeping stop. Physiotherapists who sounded, frankly, like villains (“Again. Again.”) until you realise villains don’t hold you when you fall. Friends who brought light like talismans: a pair of socks, a poem, a story that didn’t ask me to be anything but myself. Eventually I left the hospital and, later, I left my home. The war in Ukraine turned the map on its head. I crossed borders that had been only lines on screens and became weather. Trains and queues and papers. That’s another fairy tale I dislike: the one where the hero travels and “becomes a man.” I travelled and became someone without a country, then someone with a temporary one. Scotland, with its rain like a long sentence and its hills like old backs, let me in. I am grateful to a place that still believes in libraries. If the early chapters of my story were written by a cruel magician, these later ones were amended by a gentler witch. There were bursaries, improbably: a room at Moniack where the wind wrote on the windows, days at Hawkwood that felt like sunlight being banked for winter. Somebody somewhere said yes to a travel grant and my body—patched together with metal and will—was carried across rivers. Not every tale gives you a fairy godmother; sometimes it gives you a well-run office and a person who reads your email carefully. I have learned to call this magic too. Do I love fairy tales? Not the ones that taught me to fear my face, not the ones that confuse cruelty with justice. But I like the ones that admit how hard it is to come back. The ones where you descend and the world is not waiting for you, where you have to learn to write your name again. I like stories where witches are merely women with knowledge, where wolves are hunger—not evil—and where the forest is not a punishment but a living place you have to learn how to move through. There’s a scene I return to when I write my memoir. I’m at the parallel bars. I have done this dozens, maybe hundreds of times. I have failed; I have cried; I have sworn at the ghosts of saints. The physiotherapist says nothing that belongs on a poster. She says, “Heel first, remember.” I try again. A step is not a symbol. A step is a step. But symbolism is stubborn: it arrives in the room whether you invite it or not. I place my heel down, roll to the ball, shift my weight, place the other heel. Somewhere in the skull, an old door opens. Not the door back to “before.” A door to a new wing of the house. In my country’s stories, a house often stands at the edge of a forest, with a light in one window. This is where the living go to bargain with the dead. It is also where the living go to decide to keep living. On some nights in Glasgow the rain is so thick it becomes a wall you have to lean through. I walk, carefully. I still do not know exactly how the spell was altered—surgery, effort, luck, time—but I know the body is now a negotiated border. I carry a plate of metal in my spine. People sometimes call it a “fix.” I think of it as a hinge. Hinge is a word that admits movement and creak. A door that opens is also a door that can close; a hinge needs oil; the world is not obligated to stay light. But hinges mean we do not have to break the frame to enter another room. When I meet fairy tales now, I ask them to work for their bread. If a story wants my attention, it has to bring me something honest: rooms where disabled bodies are not metaphors for moral failure; kitchens where the talking beasts are not the only ones who can taste joy; roads where the test is not whether you walk without stumbling but whether you keep walking when you do. I don’t think I am a hero. Heroes did not spend months learning how to put on a sock without crying. Heroes do not sit in corridors waiting for numbers to be called, filling out forms whose questions have nowhere to put a life that does not fit. I am not a hero; I am a person who went to the underworld and came back with a single sentence: Still breathing. The title of my book is that sentence because it is not a triumph; it is a practice. You can do it badly and still be doing it. Once, after a long day of standing practice, I lay down and felt the old panic rise—the one that says the body is a trap and you will never be let out. I thought of the boys and girls in the books locked in towers. I thought of the people who came to the foot of the towers with ropes and bread and stories, because you cannot climb rope without something to climb toward. The panic dimmed. Not because I had escaped, but because I remembered that the tower has a door and I have friends who know where it is. That night I slept as if someone had sat by the bed and told me a story that ends, “and tomorrow we try again.” I’m asked sometimes what I would say to the child I was. In the old tales the answer is always an object—sword, mirror, cloak. I would bring a small hinge, heavy for its size, the kind you turn in your hand to feel the work it does. I would say: the door you want will not open all at once. But it will open. It will open enough. About the author:
Luca Ray (Borys Buravchenkov) is a Ukrainian-born memoirist based in Scotland. A disabled writer with a titanium spinal plate, he is at work on Still Breathing, a memoir about paralysis, recovery, and displacement. His work has been supported by Moniack Mhor, Hawkwood, and the Society of Authors.
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On Thursday my aunt died, on Friday my mobility scooter was stolen. Oh my god Matt, that’s awful that is fucking shit I can’t believe… is how my friends express their outrage that somebody would steal my main mobility aid from right outside my house. They struggle to find words of indignance about Eleanor’s death, which comes fifteen years after her secondary breast cancer diagnosis; her sister (my mum) died three weeks after her diagnosis in 2016. Eleanor was keenly involved in her evangelical church, but I never experienced her as judgemental or guarded. If I ever had something risqué to tell her about I would remember the time she told me: Matt, I am absolutely unshockable. She played trumpet, she fostered, she sewed, she cycled. And since my mum’s death, she was the closest person I had to a mother. Because my aunt has died, I decide to wear in a pair of new blue shoes, so I’ll be able to wear them at her funeral, dress code: colourful and casual. I plan on wearing a pair of blue Vans Sk8-Hi’s, rather than my old red and blue Vans Sk8-Hi’s which I’ve worn every day for two years and which are developing holes. Because my mobility scooter has been stolen, I have two weeks where I will have to walk, or get a bus or taxi, meaning more opportunity to work through the spike in my chronic pain caused by new shoes. * In Hans Christian Andersen’s fairy tale ‘The Red Shoes’, Karen is made shoes with scraps of red cloth, because she cannot afford anything else.(1) The first time she wears them is at her mother’s funeral, where an elderly woman decides to take her in. Karen is taken shopping for proper shoes; her new carer will not abide the ostentation of red shoes, but is tricked by Karen into buying them since she is blind. Karen wears them to her confirmation, where the shoes are cursed by an old soldier. When worn, the shoes dance uncontrollably, but Karen cannot resist abandoning the old woman on her deathbed to wear them to a ball. She cannot get the shoes off, and dances through nights and days. She eventually seeks out the executioner, who offers to behead her; she presents her feet instead, freed from her frenzy and able to repent her sin. * Sitting on the sofa in my mum’s house waiting for Eleanor to die. Memories of watching all 208 episodes of How I Met Your Mother when I became chronically ill aged 18, of sorting piles of Mum’s belongings after she died, dig into my back like lumpy cushions. My oldest cousin Deborah, fifteen years my senior, bought the house from me and my brother. Where she felt distant growing up, since my mum died she has become my closest cousin and one of my closest friends. Mum left her some money, which she used on the solicitor’s bills in her divorce from her awful husband; she also left the evangelical church and became involved in Quakers, all moves Mum would have approved of. Deborah, a nurse, is telling me about a patient with fibromyalgia who she says gave the condition a bad name. This woman, passed back and forth between rheumatology and the pain management clinic, had leg pain so long and so bad that she demanded the NHS give her an amputation. This is, of course, a madness. Pain from fibromyalgia does not originate anywhere apart from a confused mass of nerves; chopping off a leg would most likely mean pain would concentrate in another body part, not to mention the extensive muscular-skeletal problems experienced by amputees. I ask Deborah what she means when she says this woman gave my condition a bad name – that we should suck it up and present ourselves as palatable for the medics? that it made her think I really don’t fancy getting that one? – but she cannot say. I assure her my pain has never led me to wish for a limb amputation. * I identify with Karen: she chooses red leather shoes, perhaps to reenact the trauma of her mother’s funeral, attempting to make something right; when it feels too much to bear witness to the death of her second mother-figure, she abandons her to go dancing; she loses her freedom twice – once to the shoes’ power and again when her feet are amputated. The story is rich in themes, but ultimately, Amanda Leduc’s Disfigured: On Fairy Tales, Disability and Making Space led me to conclude that Karen’s frenzied dancing and eventual amputation constitutes disability and disfigurement as punishment for her immodesty before God.(2) * Twice upon a time my mother died. That is how this story would begin if it were no longer happening. But since it is happening now, in my body, in the room, in the shoes (there was an old lady…) I will tell it with the tense it is due. As her sister arrives from the other side to take Eleanor to be reunited with their mother, outside the window a field of sunflowers is going to seed. Leaving for home, I pocket a handful of possibilities. Since home is only a short flight away, I rub my wings together, and take off into the wind. I’m looking forward to sleeping in my own bed. The pain throughout my body ends where my wings begin. No witch cursed me to feel this pain, no fairy godmother blessed me with flight; each came to me one day with no more fanfare than a morning cup of tea. The very next morning I wake to find my wings lying petrified on the bed like a butterfly pinned. After desperately trying to stitch them back on, and after making some phone calls, I figure I can make it to the funeral, organised for the morning of the fourth day, if I walk and take the rest and recuperation I know I’ll need. In the corner of my bedroom stands a new pair of new blue shoes Eleanor gave me for my last birthday. Gifted a month after I’d got my wings, they’ve been left unworn. * My imagination, like us all, has been conditioned by the stories I’ve consumed. Leduc writes that ‘fairy tales often pivot on something or someone becoming different’, such as Disney’s The Little Mermaid changing her body to get the man she desires, which leaves us wondering how we can achieve contentment without fundamental bodily transformation.(3) Furthermore, when disability is not used to signify evil – ‘the deformed body giving face to the deformed heart’(4) – the disabled protagonist ends up cured of their disability, imparting the message that no happy ending can take place while disability exists.(5) A reoccurring theme in fairy tales is that rather than society changing to include and enable the outsider, it is the individual who changes.(6) How, then, to retell this story without feeding the ableist narrative that the problem exists within the disabled person? * Wearing in new shoes is a whole-body process for me. The shoe’s sole determines the angle at which the foot rests while standing, which in turn asks the muscles of the legs to bear weight in subtly different ways, arranging the hips, back and neck in a formation novel to those specific shoes. One might think switching to a new pair of the same make and model would be fairly easy. For me, it is not. The old shoes’ soles have worn with my specific weight distribution as I walk, causing a subtle but definite difference. Additionally, the new soles are much stiffer, requiring the body to work harder to bend them when walking. And because the material of the upper is rigid, it presses on the foot in unpleasant ways, impacting the rest of the body. Think really bad reflexology. * At my grandparents’ pretending everything is ok. A few weeks ago, when we cremated their remaining daughter, they sat in a side block, away from the family; Grandad couldn’t deal with mourners coming over to express their sorrow. They tell me I look well. When I leave the room, they shout to each other: Doesn’t he look well? Yes love, he looks so well. The TV blares, drowning out all possibility of being anything other than well. In Coronation Street, Paul has degenerating Motor Neurone Disease.(7) A few weeks ago he gave in, accepting he needs a wheelchair. Today is his wedding, and he insists on walking down the aisle, supported by two women, egged on by an acoustic version of Ain’t No Mountain High Enough. In my notes for this essay I write: I am not like Paul. * I don’t love the term ‘invisible disability’; it lets people off from paying close attention to those around them. I think of the time Deborah told me I was moving like I was in pain. I think of my bitten nails, the matted fleece that shrouds me all winter, the state of the kitchen. But yes, unless you know me, I do look like a healthy young man. These days, when I’m not using my mobility scooter, I carry my walking stick, even if I don’t think I’ll need it. I wear my sunflower lanyard on public transport in case it gets busy. It’s good to have a visual marker of what’s going on inside. * It is a well-worn storyline: the disabled person who wants to overcome their disability for one special, significant and public moment. The preparation is full of expensive and painful physiotherapy which can produce only temporary results, and laden with anxiety from the goal’s pressure. While the public overcoming of disability is framed as an opportunity for the disabled person to achieve pride and self-worth, these measures have been created by the unrealistic and discriminatory standards set by the abled world. The disabled person would feel no need to cast away their burdensome wheelchair or walking stick… or comfy shoes (Shit.) were it not for the audience who tells them they would be lighter, freer, more worthy without. * Once upon a time my new blue shoes banished all my pain no try again (8) Once the shoes a gift sung motivational songs & I scaled mountains forded rivers no try again Once my shoes squeezed my feet blue they dropped off everybody rushed to my aid no try again * Since I’ll be walking for at least fifteen minutes today, I yank the laces through their eyelets, cinching my feet. I tie a double knot. As I set out, pedestrians young and old leap out of my way, many into oncoming traffic. Before long, I come upon a street sweeper, who insists on forming a procession in front of me to ensure no twig or pebble upsets my path. When I stop for lunch, and to rest for the remainder of the day, I have to duck the card reader flying at my head. The cashier says: I sorry didn’t sorry think sorry you sorry could sorry reach. The next day something has to change. I slip my aching feet into my shoes and loosen their criss crossing laces, tying a bow that barely holds. As I walk, every few minutes I come to a workman’s van playing invasive music and parked so high on the pavement that I have to walk in the road. An acquaintance bumps into me with a heavy bag which they leave in my care. After waiting an hour for their return, I am forced to add their load to my own. When my day’s travel is complete, I am led up an endless staircase to a room holding a bed of bricks and shingle. I ease off my new blue shoes to rub my red and aching feet. On the third day, I wake with a strange clarity. Picking up my new blue shoes, I flex them one way and the other, before putting them on. I tie a knot I have never used before, giving my feet enough room to wiggle whilst feeling held safe. I find a button outside my bedroom door, which presents a spiral slide for my descent. For the whole of my walk it is as if a sunflower were pinned to my chest: people step aside without making a fuss, and when I come to steps passers-by offer to take my bag as if it really is no trouble. My cousin meets me halfway and carries my bags to her house. In the spare room she has set up a memory foam mattress with an assortment of hard and soft pillows; a new jar of the vitamins I’ve forgotten to pack sits on the windowsill. * Eleanor’s funeral is the same day as my flatmate G’s top surgery. The surgery goes smoothly and when I get home G is in bed, high on codeine, their partner washing up in the kitchen. For the first two weeks, he sleeps on the sofa bed and is an all-round five-star nurse. On the first post-surgery weekend, Brighton Pride, when I pop back to check if they need anything, I find three friends have come round in their glitter and sequins to play board games and cook a meal. It doesn’t take long for a what about me to creep in, and as much as I try to untangle this thread of selfishness from the story, it won’t come loose. This outpouring of assistance snags on the deep loneliness of my condition. It tugs on my need to eke out requests for help and my perpetual desire for this to be the last time I need to ask, until these parts of me trail behind like shoelaces in the rain. I have never wished for amputation, but there are days I’d take a simple car crash. * The morning of the funeral I tie my new blue shoes carefully, along with red trousers and a yellow shirt. Arriving early, the church is already an aviary of colour. When I become tired of standing and greeting people, I join my family in the front row, listening to jazz and swing while we wait for the service to begin. It’s only when the cheesy praise music starts, all electric guitar and viscous vocals, that my crying stands up inside of me. During the eulogies my feet begin to hurt, so I kick off my new blue shoes and rub my soles through my socks on the worn carpet. It’s soon my turn to get up and read the poem I made for Eleanor’s 65th two months ago, and as I stand, my cousin takes my hand. She walks with me three paces to the stage, holds my hand as my sock feet climb three steps, and stands three paces behind me to the left as I figure out the lectern and mic. As I begin to read, I look up, and, in the eyes of the front row, I see myself reflected: a sunflower, but also a bluebell, a daisy, a chrysanthemum, a daffodil, a rose. * I wanted to end there: on stage, seen in all my pain. In all my complexity and contradiction. Shoeless. In The Wounded Storyteller, Arthur W. Frank tells us that an illness narrative must ‘tell the truth that the interruptions will continue’, that ‘tidy ends are no longer appropriate’.(9) So the truth is: I had to put my shoes back on, and I couldn’t remember the knot that was just right, and, despite all that walking, they weren’t yet worn in. References 1. Hans Christian Andersen, ‘The Red Shoes’, in Fairy Tales, trans. by Tiina Nunnally (London: Penguin Classics, 2004), pp. 207-214. 2. Amanda Leduc, Disfigured: On Fairy Tales, Disability, and Making Space (Toronto: Coach House Books, 2020), p. 69. 3. Leduc, Disfigured, p. 41. 4. Ibid., p. 80. 5. Ibid., p. 68. 6. Ibid., p. 187. 7. Coronation Street, ITV One, 2 October 2023, 20:00. 8. Here, I pay homage to Alice Oswald's poem 'Dunt: A Poem for a Dried-Up River' in Alice Oswald, Falling Awake (London: Jonathan Cape, 2016). 9. Arthur W. Frank, The Wounded Storyteller: Body, Illness and Ethics, 2nd edn (London: Chicago University Press, 2013). p. 59. About the author:
Matt Alton’s recent poetry, written in a mouldy basement flat bed, is forthcoming in Knee Brace Press and Written Off’s anthology Ey Up 4. Other poems have been published in Under the Radar, Ink Sweat & Tears, Lucent Dreaming, Flights, and Broken Sleep's Masculinity: an anthology of modern voices. His film-poems explore grief and inhabiting the city with a disability: Brighton, Unfinished was commissioned by Apples & Snakes and is available on YouTube; Ways to Speak Absence was a collaboration with artist Chris Alton, composer Kirsty Martin, and members of Hullabaloo Community Quire. Since 2025 he lives in Manchester, UK.
As I navigate a relapse of the chronic neurological condition with which I live: Myalgic Encephalomyelitis (M.E), my imagination places me in a seascape as a fierce wave of nausea tosses me up from my pillow and the mattress beneath me feels like foam and froth, upon which I am tossed like flotsam. Adrift on this raft of what feels like no return, I am drawn towards art for distraction, and focus on “After the Storm”, a piece of photomontage by Ashley Cook who specialises in printmaking responsive to her creative positionality ‘to express our need to find meaning and acknowledge[…] that we use stories to make sense of our existence’ (Cook, 2025). This work leans into the Greek myth of Sirens, culturally represented as malevolent bird-like creatures who tempt sailors to their doom. Yet Cook’s Siren defiantly faces the viewer, not the ship which remains intact upon the waves behind her. The vessel is a long, broad galleon which peacocks it’s sails the height of the clouded sky, and yet there is something fragile about these mainsails: thin, yellowing paper-like triangular sheets of canvas to which I imagine a torch set aflame. But perhaps this is not an imagining: the heat of a neuropathic jolt, a shocking fusion of numbness and molten pressure clamps around the base of my skull, before shooting up and across my face and I see the electrical activity of my body reflected in the sky above Siren, which is alive with plumes of hot cerise and purple swathes of swirling light, against which clouds of magenta explode like passionate bombs of warning. The look on Siren’s face and the sense of foreboding it imparts, makes me think that she is suspended in a moment in time before the storm or perhaps even during the storm. I wonder if this is another projection as I spin into a whirlpool of restless exhaustion, and my memory escapes to the Dumfries and Galloway coastline and my childhood holidays, to the bay in which we bobbed as a family, on a dingy made for two into which four had been crammed and from which I had dipped my fingers in and out of the cold, dark waves. Oh, for some cool darkness now, as my face fires from an unregulated heat within. I hear my mum calling, “watch out! watch out for the rocks!” and I am watching, waiting for an inevitable crash into a gale-force relapse as I have no life jacket; no potions or spells to seek for relief and I realise that the shore-bound ship of my bodily self has already been wrecked. There is wreckage to be found in Cook’s print, but you have to look closely and I have oh-so-much-time to do so. Siren’s rib cage is made up of pickings of drift wood, her waist merging into what looks at first like a nest of twigs and branches, but on closer inspection may be the skeleton of a bird, and this places her fully in the mists of myth: that she is half-women half-feathered creature. Her hips curve across and around brittle-brown and grey lines of bone, a determined female form of self-protection around which blue coalesces and tiny fish swim across. To her left lies her own reflection, ethereal in its underwater submerging. Like Ophelia, her hair waves away from her like strands of seaweed. But Siren has not been pushed down by the patriarchy. Even in her immersion, that is crystal-clear. There is a watery world of difference between the foregrounded Siren and her submerged reflection as the latter has no bird perched upon her head, only its remaining wings are stretched out in preparation to take flight. The fragile feathers arising from behind her neck make her angelic, her beneath the waves state one of a christening not exile. Under the weighted waves of my clinical fatigue, I perceive the bird on the upstanding Siren as an albatross. But isn’t that the sailor’s dead weight to carry, and aren’t I not only land locked but confined to the house, confined to a bed? This makes me both sailor and land dweller; a voyager between the realms of relapse and remission. This middle space may be mapped by writer and activist Susan Sontag, who talks of a “kingdom of the sick” wherein ‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place’ (Sontag ,1978: 3). I don’t want to reside in this other place, so imagine myself as a stowaway, seeking to remain undiscovered by the relapse pirates who would plunder my resilience. There are no pirates swashbuckling across the scene depicted in “After the Storm”. Possibly, there are not even sailors: I can only make out expressionist forms, mere dabs of colour at the ship’s helm and I wonder if their fuzzy outlines are to suggest a state of panic: their shanties long-silenced, their swaggering selves stilted by shock or stunned by the Siren’s song. But Siren’s mouth is closed and shaped by a contented smile. My own lips murmur sweet songs of blackbirds who sing in the dead of night (The Beatles, 1968). McCartney’s meditative melody helps to draw me away from the artificial night cast by my necessary eye mask and closer to memories of sunny days on the outside, under a cobalt blue sky when my eyes can tolerate a shaded spot of verdant green within which real blackbirds sing. McCartney’s lyric pulls along another refrain composed by Wolf Larsen. Larsen is the musical alter ego of Sarah Ramey, author of The Lady’s Handbook for her Mysterious Illness (2020), making Larsen, like the Siren and her floating reflection, a multi-faceted person. Her Lady’s Handbook lays out her overt physical pain and the medical gaslighting imposed on her in distressing detail, as she charts her decades of chronic illness experience. Conversely, her Wolf self sings haunting melodies in which the soul can bathe. The making of her music has often been stymied by her body, but she has succeeded in what all artists dream of: being heard. Her lyrics are a message in a bottle which has made headway from her home across the Atlantic to my solitary Scottish cove of isolation. I mentally unfurl the parchment and her words from “If I Be Wrong” (Larsen, 2011), call to me - What if I'm wrong, what if l've lied What if l've dragged you here to my own dark night Larsen’s use of the dark night speaks to me as a metaphor for illness, and the fear that she has dragged her companion towards her as a signalling of self-blame. I recognise this remorse, felt when family and friends have to whisper to me in the dark, or anxiously wait on the edge of the rocks for sight of me signalling my return from over the horizon of respite. Larsen’s lyrics become more explicit in their connections to the lore of luring inherent in the Siren myth - What if they're right, what if we're wrong What if I've lured you here with a Siren song? Her music is captivating; enchants me in a way that I feel listened to, despite my silence. She sings on - But if I be wrong, if I be right Let me be here with you tonight, I am indeed lured towards Larsen’s initial undercurrent of self-doubt as it is washed over by a more buoyant belief that she may be right to have opened up her world to others. I picture myself spotting land in the distance and there on the beach is a bounty of treasure. Something to be found gleaming amongst the seabed or the imagination when fastened to the mast of a real bed: a new technique for coping, a fresh routine to enhance resting, a carefully-honed skill that brings distraction, a pink-lined conch in the form of a letter or voice note which echoes soothing words of kindness and support. Sometimes, these new songs, sand-grain-sized fragments of relief, play too loud and the world has to be muffled or even muted. As I place heavy but necessary defenders across my sensitive ears, I resist for a moment; I’m am no Odysseus, the hero of Homer’s Odyssey, who famously ensured that he and his men avoided the Sirens' lure by plugging their ears with wax. I want to listen to more of Larsen and I think how short-sighted Jason was as he protected his Argonauts by drowning out the Siren’s melody, because he too had misappropriated their songs to that embedded excuse for male weakness: female sexuality. There is little sexual or sensual about Cook’s Siren. Her beauty arises from her confidence, her attractiveness is in her assurance that things will change and that she will be the one to bring about that transformation. How sweet it would be to sense a seaside-salted breeze, although I don’t need the expanse of an ocean, just a few drops of rain and the smell of the cooling tarmac, which is growing hot in the outside summer. Yes, outside it is early summer. Here, on the inside, a winter has been cast across my world. But it is a winter which will be followed by spring and I am reminded that Sirens are connected to the Goddess of earth and spring: Persephone, who was abducted by Hades because he had wanted her for a wife. She had been forbidden any words of refusal, never mind her own song. Persephone’s companions were given wings by Persephone’s mother, Demeter, in order that they may take flight and search for Persephone, or as others would have it, were saddled with wings as a punishment for having let her be taken. But how could wings be a punishment? Who wouldn’t want to fly, to soar, to be relieved of the albatross? And who wouldn’t want to grow feathers and bone, sinew of pink and tissues of white to make it easier to search for a sister and to bring her home? By this retelling, Sirens are not malicious creatures diminished to acts of allure, but women on a mission to protect and hold onto their community. As the sky flourishes above Siren with the bloom of a new dawn, she signals to me that the storm is over. If I don’t feel it quite yet, I know that eventually, I will: I have become fluid in my approach to time, patient in my paddling of the shallows until I find firmer sand on which to support and steady my limbs. I am attuned to the direction of the winds of time and what change they may bring. My gratitude is practiced and holds fast: for shelter, fresh water and sweet fruit and most of all, the knowledge that through the eyes of these fellow female artists and my sister-friends, I never was or will be castaway on an island forever and alone, and as I catch this drop of hope, the storm truly ends Works referenced Beatles, The. (1968). ‘Blackbird’, The Beatles (also known as The White Album) [CD]. Apple Records. Cook, A. (2022). After the Storm, [digital print]. Glasgow Print Studio, Glasgow. Available at: https://shop.glasgowprintstudio.co.uk/artists/43-ashley-cook/works/37171-ashley-cook-after-the-storm-2022/ (Accessed: 24th April, 2025). Cook, A. (2025). Introduction to ‘Wishful Thinking’. Available at: https://ashleycook.art/wishful-thinking/ (Accessed 2nd May, 2025). Larsen, W. (2011). ‘If I Be Wrong’, Quiet at the Kitchen Door [EP]. Ramey/Spotify Ramey, S. (2020). The Lady's Handbook for Her Mysterious Illness: A Memoir. Anchor. Sontag, S. (2013). Illness as metaphor and AIDS and its metaphors. Farrar, Straus and Giroux. About the author
Arlene Jackson is a postgraduate researcher at Manchester Metropolitan University. As a former nurse who now lives with chronic illness/disability, Arlene utilises her perspective from the other side of the medical fence to analyse and critique literary and scholarly representations of illness and disability. Her current project seeks to explore the meaning and value of fiction on audio format to individuals living with sensory impairments specific to Myalgic Encephalomyelitis. She has been published both creatively and critically, including in The BMJ Humanities, The Polyphony, Synapsis, Sentinel Literary Journal and Thimble Literary Journal. She is available for contact both at BlueSky @arlenejackson.bsky.social and here
My third-grade teacher announced our math quiz scores. “Thomas ~ 10, Julia ~ 9, Albert ~ 10, Marilyn ~ 0. “Why can’t you do simple percentages like Barbara! She gets all A’s,” Mom said. My older sister was popular, never had to study, great at tennis, softball, and cheerleading. The only student who received consistent zeros, I was an easy target for bullies. Some were teachers. My teachers did not seem to care or have the resources to help me with math, writing, or reading. In that era, dyscalculia and dyslexia were rarely known terms. Educators did not appear to understand the learning difficulties I had. Barbara, 12–years old at the time, pointed out the reversed ‘D’ I wrote during a homework assignment. Ashamed and humiliated, I wished to be Peter Pan who lived in Never Land and had wonderful adventures. Teachers discussed my grades with Mom and Dad. Marilyn is listless and daydreams in class, they said. I felt like Cinderella who endured abuse and was treated unfairly. Drawn to Grimm’s Fairy Tales, I empathized with “Little Match Girl,” casted aside, cold, hungry, starving for love and acceptance. Dad bullied me about my difficulties counting coins, paper currency, and figuring out how much change we would receive when shopping and buying gas. Attacked by two dogs, I had a breakdown before my senior year in high school. I stayed in my room all summer convinced I was dying from rabies. My days were filled with panic attacks, fearing the sight of water, and contracting lockjaw. A tiny red change purse with a yellow smiley face sat in the top dresser drawer with my tee–shirts. Like a monster, it hurled vicious words at me. Haunted by night terrors, I woke up clammy, my heart threatening to implode. Dad rarely spoke to me. Without warning, he barged into my room, pinched my shoulders with his huge construction worker hands, shook me, and said, “Get over this nonsense!” That did not work. Despite placing in the poor readers group, books became one of my coping skills. I dreamed of being a pirate on Captain Hook’s ship, The Jolly Roger, and journeys on the Mississippi River with Huckleberry Finn. From ages 6–14 my parents sent me away to sleepaway camp in the Catskill Mountains. Last to be chosen for softball, soccer, and tennis teams, I was sad and lonely. After a classmate died from leukemia, I was sure to die next. Obsessed with catching germs, I tucked a hand under my tee–shirt, grabbed doorknobs, and turned them. I did not use public bathrooms. I washed my hands until they bled. Mumbling my obsessive-compulsive disorder (OCD) and anxiety symptoms to the family doctor, he prescribed Valium. He laughed and warned Mom and Dad about teen–age hormones. He never mentioned Agoraphobia. My sister Barb predicted I would never leave home, destined to live a life of failure and despair. She provided the motivation I needed to plan my escape from home. “You’ll never pass your driving test or make the grades to go to college,” Mom reminded me, over, and over…. You’re living in a fantasy world.” Mom’s dreams of becoming an oil painter and living an independent life died when she married Dad. The valium worked. At summer’s end, I studied and struggled to pass my New York State Regent exams required for college. I overcompensated for my dyslexia by ruminating over each word on the test while stressing out on the time limit for each exam. Barely passing math, I scored better in Spanish, History, and Science. I went to driving school and passed my test the first time, proving Mom’s prophesy wrong. After graduating from high school, I commuted to a state university by car for one year. Higher education institutions did not provide learning disability services at this time. Still, would I have sought out help and suffer through the stigma attached to my needs? I maintained a C average, transferred to a private college, and moved into the dorms. Struggling to function on my own, I created coping skills. When my test scores were low, I asked professors for extra credit term paper assignments. Besides books, writing, and learning became my passions. Still, I had mini breakdowns during those years. Pressured to succeed and show Mom was wrong, I was obsessed with getting all A’s. I majored in education to support other students and parents navigating the learning disability maze of services and lack thereof. Graduating Cum Laude with a Batchelor of Science in special and elementary education, I earned a Master of Science degree in education, as well. After Mom’s death my fear of dogs escalated to dangerous proportions. I darted between parked cars and stepped into moving traffic to avoid loose and leashed animals. I ran away too, not a great reaction since dogs enjoy the chase. My boyfriend Ed grabbed me and pulled me to onto the sidewalks. Filling the hollowness I felt from Mom’s death, I overate cookies, cakes, and candy, gaining 60 pounds. The stress of my first job in the education field, coupled with difficult co–workers, I had another breakdown. Driving became a trigger. I stopped using my car. I did not leave the house except when Ed took me to the therapist and doctor appointments. Diagnosed OCD (obsessive compulsive), anxiety disorders, dyslexia, and dyscalculia as an adult, the psychiatrist prescribed anti–depressants and medications for anxiety. Desperate for relief from the mental torture, there were many days when hospitalization seemed to be my only option. My dad spent three months in a hospital for depression. I was determined to not be him. Pushing through the darkness, I received treatment at home for agoraphobia anxiety, and OCD. For eight months, under a therapist’s care, I walked down the stairs of our apartment, touched the doorknob, and climbed back up to safety. Taking small steps in my recovery, finally I opened the door and stepped outside. Another four months I walked one block. Then two and three blocks. Ed was worn out from caring for me. I realized he needed a break. Terrified of being left alone, I took the risk and agreed he could go on a sixteen–day tour of Ireland and Wales. I was jealous and determined to live a full life. Yet, dog fears threatened to stop me. I had Exposure Therapy with a trained psychologist. After six months of taking small steps toward the docile Labrador Retriever, then backing away, finally I pet the dog’s coat. My first experience with the dog was a success. Then, we stopped therapy. I should have had more sessions, but the therapist was afraid to retraumatize me. Vacations and moods stir up this trigger. If I am feeling confident and less stressed, small dogs look cute and non-threatening. Still, large dogs terrify me. Despite this trigger we have traveled on 25 cruises to the Caribbean, Mexico, Canada, England, Cuba, and France. COVID was excruciating. I still mask in the airport and go through lots of hand sanitizers on the plane, wipe the phones, TV remotes, and doorknobs in hotels. Last summer we went to Marina del Rey, California. We arrived on a Sunday. After checking into our hotel, lunch was next. Holding my cell phone, I searched the streets for dogs, while walking across the street to the restaurant. Taking pictures of these animals proved I did not get bitten when they came near me. Large and small dogs were everywhere. Yes, I knew that California was one of many dog–friendly states in the US. Dogs sat at the dinner tables beside their humans, ran off–leash throughout the shops, swam in the hotel pool and bay, and sunbathed. Deep breathing, exhaling, and looking at the sparkly water, boats, and perfect summer sky, I managed to distract myself from the triggers. After lunch we went back to our hotel. Exhausted, I watched the sunrays ripple against the water before taking a nap. Resting is another coping skill. On Monday, we took a short walk to a coffee shop. The streets were empty except for people going to work. I distracted myself from the dog fear with taking pictures of flowers, trees, the bay, and the architecture of various buildings. Instead of running, from the triggers, I stopped and observed them. Today, I am stable and living a full life. I am a successful small business owner for 34 years, published writer and author. Teaching creative–writing to adults and teens, I provide encouragement, support, and resources to students needing assistance with written language skills. Following through on a weight–loss program, I lost 60 pounds after one year. My weight fluctuates between a 3-pound gain and loss, which is normal for maintenance. I must use a calculator to add and subtract. My reading and writing have improved. In October 2023 I earned my Peer Support Specialist certification. I am a peer group facilitator for DBSA (Depression, Bipolar, Support Alliance California). Peer Support Specialists are not therapists, doctors, or nurses, and do not prescribe medications. We offer support and resources through our lived experiences. I am not “The Little Match Girl,” starving for love and acceptance. Peter Pan and Captain Hook inspired me to dream. I married Ed. We celebrated 38 years of marriage in 2023. Every day I practice self–care by eating healthy food, exercising, listening to guided meditation, and using my coping skills in stressful situations. Courage, perseverance, therapy, peer groups, physician prescribed medications, and facilitating has spurred me on to achieve a happy life despite my fears, phobias, OCD, and learning disabilities. About the author:
Marilyn June Janson's dyslexia, dyscalculia, OCD, and anxiety disorders were diagnosed when she became an adult. Still, with courage, determination, and reliance, she earned a Master of Science degree in special and elementary education. Ms. Janson teaches creative writing, won three awards for nonfiction, and is a published author. She lives in Phoenix, Arizona with her husband Ed and Bella Rose, a cat.
When I was young, I loved fairy tales. I still own the copies of The Chronicles of Narnia my grandmother gave me before her passing. I could immerse myself in the stories for hours, but like every child, I eventually put down fairy tales and moved on. Last year, I saw a copy of Leduc’s Disfigured: On Fairy Tales, Disability, and Making Space on a library shelf at university and wondered how disability and fairy tales intersected. I decided to re-read some of the stories, using the knowledge from my disability studies course and my lived experiences as a physically disabled adult. I read a few and came to a realisation. Princesses don’t use walking frames because (if they were anything like me) they would constantly roll over their floor-length dresses and trip; Red Riding Hood wouldn’t have made it far in the forest with her wheels constantly getting filled with mud and leaves. Cinderella wouldn’t have got away as the clock struck midnight because she would be searching for a ramp, or trying to get down the staircase and need a rest break every few steps, never mind walking in glass-heeled slippers. I am the creature that handsome princes fight, I lurk and plot and scheme, or at least that is what fairy tales want children to believe. As a child, people my age would run away from me screaming because I have cerebral palsy and walk with a walking frame. I have a scissoring gait and awkward hands; I can be difficult to understand if I’m feeling incredibly upset or angry. It was easy for them to make me into something different, to run away screaming, “it’s going to get us!” and leave me alone, wondering why. As an adult, I have had parents tell their children not to get close to me in sharp tones, and children hide behind their parents at the sight of me. In the most extreme cases, I have had people cross themselves or refuse to touch something that I have touched. These experiences are entrenched in societal and cultural prejudices, but where do children, new and learning about this world, gain these notions? Literature provides a lens for children to understand the world we inhabit, it is their first interaction with the terms “good” and “evil”, the “normal” and “abnormal”, the initial introduction to what is considered “right” and “wrong”. Fairy tales provide “morals on how to be a proper citizen in society” (Seider, 2020). In her review of Leduc’s book, Disfigured: On Fairy Tales, Disability, and Making Space, Kuitenbrouwer (2022) states plainly, “In some way, it is story that gives us world at all” but the worlds of fairy tales are steeped in stereotypes and societal prejudice beneath their mystique. Beyond the knights in shining armour or the fanciful princesses and mystical creatures, there is a message. Disabled people are evil, disabled people are abnormal, disabled people are wrong, and disability is a punishment. The good characters are always perfect. Princesses are beautiful beyond compare; princes are handsome and charming. Their legs don’t bend inwards like mine, they do not have limp wrists that twist their hands in awkward ways. Their mouths do not have difficulty forming words, or problems with drooling. Their hearts don’t beat too fast when standing or cause them to feel faint or dizzy. Without the love of the perfect ones, the disabled person cannot be transformed into being as beautiful on the outside as they are on the inside. As a child, I wondered if I needed to be defined by the love of others to be seen as something other than Other. Doctors had tried to transform me into someone almost “normal”. They taught me to walk because they thought it made me “more human”. I had to learn to twist my hands in “normal ways” and force myself to learn how to hold cutlery and write and type in ways that caused me pain because I needed to be something “other” than myself. My transformation was not complete, it could never be complete because I did not need to be transformed to have worth. Disability as a punishment is a recurring theme. The prince becomes the Beast because of his poor behaviour, and the evil stepmother and stepsisters in Cinderella have their eyes pecked out by the pigeons who helped Cinderella, blinding them. Aslan wounds Avaris’ back to remind her of her wrongdoing and can remove speech from any Talking Beast in Narnia. What does that teach children? If someone is disabled, what have they done to deserve it? If that person exhibits what society considers “good behaviour”, they’ll be cured of their disabilities. If you are not good or on your best behaviour, you will end up disabled and be forever marked as “bad”, “wrong”, or “evil”? In fairy tales, disability can be “cured” with acts of kindness or immense love. The prince in the original Sleeping Beauty tale was “cured” of his blindness when the tears of the beautiful princess fell on his face and he was suddenly able to take up his former mantle and self after years of wandering a forest eating berries in despair. The disabled person would be “transformed” to escape their disability; the Beast turns back into a handsome prince, the Little Mermaid ends her life and her consciousness floats away in the hopes of gaining an immortal soul, and the ugly duckling becomes a beautiful swan, Hans the half-hedgehog, half-human becomes wholly human after he falls in love with a princess, the woman who has her hands cut off by the devil in “The Woman Without Hands” wanders the world surviving on pity and the charity of others and is cured of her disability as a “reward of faith” when she marries a king. Hodkinson and Park (2017) reflect on the theory of Harnett (2000), “This transformation of the disabled character, it is argued, shapes children to believe that disability is unrealistic and also that disabled people can be magically healed or cured.” Further, their research found that “the disabled character was either killed, missing or transformed into a ‘normal’ person within the majority of the books employing this form of ending”. This ending refers to the immortal words ‘happily ever after’, present in four of the five books Hodkinson and Park analysed to research normalcy and the perfect physical appearance. How many disabled children feel that they can have a “happily ever after” reading about what happens to those society considers “abnormal” and “ugly”? Leduc’s book argues that fairy tales condition disabled children to look at themselves as “other”. How did those children feel when I was a child, seeing me, the “other”, a figure from a fairy tale brought to life and walking among them? How did that early lens of morality interfere with their understanding of me as a person? Fairy tales tell me people like me will never have a happy ending. There will be no handsome prince or beautiful princess to love me and magically “cure” me, not that I needed transforming or curing in the first place. One cannot reduce the internalised negative messages towards disability to literature alone, but let’s change our outlook and make fairy tales with young disabled people as the heroes of their own stories, not through magical transformations or immense “healing” love, but through their character development and growth. We are representing ourselves in books, films and television now more than ever, and I hope that we will continue to expand in the media to truly show accurate portrayals of lived experiences of disability, so that every disabled child can have a character they can relate to and admire, so they will never feel how the disabled people before them felt. Disabled people might not get a happy ending in the old stories, but we are writing our own stories, our endings, on and off the page. Our stories are defined by us. References Hodkinson, A. and Park, J., 2017. ’Telling Tales’: An Investigation into the Representation of Disability in Classic Children’s Fairy Tales. Educational Futures, 8(2), pp.48-68. Kuitenbrouwer, K., (n.d). Kathryn Kuitenbrouwer Reviews Amanda Leduc's Disfigured: On Fairy Tales, Disability, and Making Space. Available at: http://hamiltonreviewofbooks.com/blog/2020/5/15/kathryn-kuitenbrouwer-reviews-amanda-leducs-disfigured-on-fairy-tales-disability-and-making-space. [Accessed on: 17th January 2023]. Leduc, A., 2020. Disfigured: On fairy tales, disability, and making space. Coach House Books. Seider, A., (2020). EXPOSING A MISINFORMED AND DISABLED FAIRYTALE. THE SOSLAND JOURNAL 2020, p.73. About the author:
Melanie Kennedy-Diver holds a master’s degree in Disability Studies from Liverpool Hope University and a BA (Hons) degree in Politics, Philosophy and Society from the University of Central Lancashire. She has an interest in literature and disability representations. Acknowledgements: Thank you to Sarah for reminding me about the importance of ending this essay with optimism and to another close friend for reminding me about the necessity of maintaining hope. To you I say, thank you for everything. Andersen’s The Little Mermaid: ‘if you take away my voice, what is left of me?' by Scarlett Ward3/3/2022
In Andersen’s The Little Mermaid, emphasis is placed upon how she lost her beautiful singing voice in return for legs which makes walking feel as though “a swords were passing through” her, all for a life so very different from her own. Hans Christian Andersen unwittingly tells the story of my relapse into Multiple Sclerosis and Bulbar Palsy. Having speech robbed, understanding of the written word swim before your eyes like being under water, and yes, every step of learning to walk again is like walking on knife point. Multiple Sclerosis is a progressive disease where your own immunity attacks your nerves. Something I didn’t know I had until suddenly my able body of 28 years collapsed, and I found myself in this state of The Little Mermaid, with a life I hardly recognised. Han’s mermaid asks, “but if you take away my voice what is left of me?” It is a question I find myself asking every day. As a poet, a performer, a workshop facilitator, my identity is in voice. I struggled to come to terms with who I would become without it. Although my speech has returned, it is impeded, I have found that I demand more time and patience from who is talking. Whilst before I was quite anxious about making myself heard, it’s as though I had to lose my ability to speak to gain enough confidence to talk to people. I demand space and I don’t tolerate interruption, no matter how well-meaning they are. I had a lot of internalised ableism about “sounding stupid” to work through, partly because of preconceived ideas of perfectionism within myself. That question “what is left of me?” is answered by my writing, my ability to live life every day despite my illness, my love of animals and family. I had to stop counting things I couldn’t do and start being grateful for things I can. There is a bloody lot left of me actually, even if I never fully get my speech back. What has emerged had been stubbornness, determinedness, and an unwillingness to quit. A week ago I couldn’t write, now I am writing an essay an using my voice. Those who know me will tell you this comes as little surprise. Andersen’s mermaid looked at her prince “sorrowfully with her deep blue eyes but could not speak” and is pitiful, described as a “foundling” or a “child.” What I find so compelling about Andersen’s mermaid is how she is infantilised, agreeing to dance on feet that are “bloodied” because she wanted to impress her prince. Rather than being someone who deserved pity, I bared my teeth and I climbed those stairs, I told my physio “again” when I reached the end of the corridor. The way that disabled people are treated in folklore as something to be pitied is so misplaced. I would rather drown under an ocean than allow anyone to feel sorry for me, because there is so much left of me than what my disability took away. |
