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.
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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
Disability is common within European folktale canon. Charles Perrault’s literary tale, “Ricky the Tuft,” features a deformed protagonist (Betts, 2009). Hans Christian Andersen’s “The Little Mermaid” becomes mute and suffers chronic pain (Hersholt, 1949). The Brothers Grimm added disability to stories in which none were present (Schmiesing, 2014). Disability is also a component of lesser-known tales. Consider “Conall Cra Bhuidhe” (Campbell, 1890). The story is Aarne-Thompson-Uther type 953, “The Robber and His Sons” (Uther, 2004) and recounts a man’s efforts to save his sons from execution, initially by stealing a foreign king’s horse, then by telling the monarch thrilling anecdotes. The text notably avoids common and problematic tropes regarding disability. Three stereotypes are specifically absent. Firstly, the sexless and unpartnered disabled person (Kingsbury, 2022). Not only does Conall have four biological children and a wife, the latter admits she would rather lose their sons than lose him. Secondly, the disabled character being a villain (Leduc, 2020). While the story does feature a blind, cannibalistic giant as an antagonist, any association between disability and evil is negated by the fact that Conall is missing a finger, making him disabled too. Thirdly, disabilities are cured as part of happy endings (Maaren, 2019). Conall lost a digit at some point during early adulthood and remains disabled by the narrative’s end. It’s even implied that he doesn’t wear a prosthetic or do anything to hide his condition. Despite these positives, the narrative contains problematic tropes. It uses disability as a form of punishment (Kingsbury, 2022). This applies to Conall and the giant. The former is forced to sever his finger because he boasted to his enemy, then wore a magic ring his enemy gave him. The latter is blinded for trying to kill and eat the protagonist. At least the context provides justification; people are likelier to suffer permanent injury during battle than when attending their abused stepsister’s wedding, as occurs in the Grimm’s tale “Ashputtle” (Manheim, 1983). Additionally, disability is treated as superficial (Kingsbury, 2022). This is most evident with Conall, both in the main narrative and the third embedded one. Despite his missing finger, he’s never shown to struggle with fine motor activities like climbing or tying knots. This unusually nuanced quality may relate to the informant. According to Campbell’s notes, the tale was recited by James Wilson, a blind fiddler from Islay, whose blindness influenced his telling. Assuming this information is accurate, “Conall Cra Bhuidhe” is a milestone in the history of disability representation because it’s the story of a disabled protagonist by a disabled narrator. “Conall Cra Bhuidhe” has a lot to offer in terms of disability studies and general entertainment. People concerned with the former receive a glimpse into the treatment of disabled people in nineteenth-century Scotland and get to experience a disabled character as the protagonist. As for the latter, people will find a story that appeals to our desire to protect the ones we love. Few other narratives are so multifaceted. Bibliography Betts, Christopher. (2009). The complete fairy tales. Oxford University Press. Kingsbury, Margaret. (2022, Feb 21). 9 ableist tropes in fiction I could do without. Book Riot. Retrieved from http://web.archive.org/web/20220221122918/https://bookriot.com/ableist-tropes-in-fiction/ Campbell, John. F. (1890). Popular tales of the west highlands. Edinburgh: Edmonston & Douglas. Hersholt, Jean. (1949). The complete andersen. New York: The Limited Editions Club. Retrieved from https://andersen.sdu.dk/vaerk/hersholt/TheLittleMermaid_e.html Leduc, Amanda. (2020). Disfigured: On fairy tales, disability, and making space. Toronto: Coach House Books. Maaren, Kari. (2019). The blind prince reimagined: Disability in fairy tales. Uncanny Magazine. Retrieved from https://www.uncannymagazine.com/article/the-blind-prince-reimagined-disability-in-fairy-tales/ Manheim, Ralph. (1983). Grimms’ tales for young and old: The complete stories. Anchor Books. Schmiesing, Ann. (2014). Disability, deformity, disease in the grimms’ fairy tales. Detroit: Wayne State University Press. Uther, Hans-Jorg. (2004). The types of international folktales. A classification and bibliography. Based on the system of antti aarne and stith thompson. Part I. Animal tales, tales of magic, religious tales, and realistic tales, with an introduction. Helsinki: Suomalainen Tiedeakatemia.
She is the one people see. The one they think they know. But it is only the bones of her. Without me, she is incomplete. I am the night to her day, the weakness to her strength. The wax to her bone. In May 2020, I had a short story published by Reflex Press called “Wax Sister, Bone Sister”. It is based on the Zimbabwean folktale “Sister of Bones” (which I first read in Alexander McCall Smith’s 2004 collection The Girl Who Married a Lion) with motifs from three more Sub-Saharan folktales: “Children of Wax” (Zimbabwe, Ibid.) , “The Wife Who Could Not Work” (Zimbabwe, Ibud.) and “Of the Fat Woman Who Melted Away” (Nigeria, African Myths Ed. Jake Jackson, 2019). “Sister of Bones” tells of a weak sister and a strong sister. When the strong sister dies, the weak sister must take on the departed sister’s chores. The work becomes too much for her. She sings to the river in which her sister drowned, and the crocodiles take pity and put the dead sister’s bones back together. This Bone Sister helps the weak sister carry water, but must remain by the river. So, there are two sisters at the end of the tale: the strong one at the river and the weak one in the village. I developed fibromyalgia in 2016, following a chest infection. At first, when it was undiagnosed, the pain was so bad and the drugs so strong that I was bed-bound. Later, I became able to resume a more “normal” life. But as anyone with the same or a similar condition will know, levels of pain and fatigue can fluctuate wildly from day to day. Sometimes I can go for a five-mile walk or redecorate my hall. Sometimes I can’t even get a bra on. Hence, the motif of the weak and the strong sister. Usually when people look at someone with fibromyalgia or similar conditions, they see only one version of us. We either get overpowering pity that we don’t need, or the cringe-inducing comments, “You don’t look ill,” “You’re looking well” (usually when you haven’t slept properly for three nights), or “Yes, I’ve been quite tired, too.” Most of our friends only see us on our good days, because that’s when we’re able to get out. They don’t see us on those mornings when we’re silently willing the cat to walk over us, just to stimulate any kind of movement in our muscles. They don’t see how, in order to be productive, we must be efficient in the short space of time we have before we collapse on the bed again. What I like about “Sister of Bones” (and its cousin stories listed above) is that it does see us. Both the weak sister and the strong. I come from a line of strong women. I was never one of them, even before I developed fibromyalgia. “The Wife Who Could Not Work” and “Of the Fat Woman Who Melted Away” both depict a woman who is ostracised by the other women in her community because she must sit in the shade all day and not work. They call her lazy. They shame her into working, with disastrous results. I’m not saying my family treats me like that. (Far from it). But those of us with chronic illness or disability can feel that kind of pressure, either from society or from our own thoughts. We can feel guilty about the little we are able to do on our “bad days”. Perhaps we had to give up a job and we now feel guilty about not contributing to the household budget. Perhaps we encounter shaming from others for being on benefits, especially when our disability is not visible to the general public. These two stories recognise that there are perfectly legitimate reasons why some people cannot work. The village learns a lesson. It’s a lesson we all need to learn. The Fat Woman Who Melted is made of oil. The Children of Wax similarly melt if they go into the sun, and must hide away. I find this wax motif very powerful, especially where my fibromyalgia intersects with my depression/anxiety and my asexuality. (I retold “Children of Wax” in my 2020 collection Asexual Myths & Tales). It helps me articulate something about “invisible” disabilities and an “invisible” orientation. That’s why I made it part of “Wax Sister, Bone Sister”. I am the sister no one sees. The silent sister, the indoor sister, who oozes down the stairwell, who quivers in pools on the kitchen floor. The one who – come morning – must be scraped from the slats of the bed. Flaking. Falling. It is inevitable in all these stories that the sisters, wives and children must come out of the shadow and into the sunlight. People must see them melt. It is the same with us. People need to see our “invisible” health conditions, with all their contradictions. The Wax Sister and the Bone Sister. *** Read "Wax Sister, Bone Sister" by Elizabeth Hopkinson. About the author:
Elizabeth Hopkinson is the author of the Asexual Fairy Tales series. She was featured in the BBC’s We Are Bradford project, and was on Stonewall's first ace/aro panel. Her short stories have appeared in The Forgotten & the Fantastical and Dancing with Mr Darcy, along with many other anthologies and magazines. Her story “A Short History of the Dream Library” won the James White Award. Elizabeth has appeared at Leeds LGBT+ Literature Festival, Ilkley Literature Festival Fringe and Swanwick Writers’ Summer School. She lives in Bradford with her husband, daughter and cat. Elizabeth is a romantic asexual and is committed to asexual representation in fiction. She is currently crowdfunding More Asexual Fairy Tales. http://www.elizabethhopkinson.uk |
