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.
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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. |
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