IMAGINATIONUPSIDEDOWN… THE WORLD OF THORNTON W. BLEASE
Children’s books are mirrors in which youth identify with the characters found in books they read. All children prefer to emerge themselves with characters that have similar feelings and experiences as they do. Books also serve as opportunities to learn about the world beyond their families and local communities. They are powerful vehicles for self- approval, and promotion of empathy and acceptance of one another’s differences.
Children’s Literature must be inclusive. It needs diverse characters, including characters with (dis)abilities- like me.
And like you.
Growing up with disabilities was easy and hard at the same time. In many ways, I was a typical child growing up, in other ways, very different. I was labeled as “twice exceptional.” That means I am gifted and I also have learning (dis)abilities, a constricting term to describe the fact that I am me, an individual, not an off the chart number on an IQ scale or a kid with limitations.
As a side note. I find IQ score interesting. When I was tested as a four-year-old, I tested in the profoundly gifted IQ range- 180+. Later, with a different test, one which teases out and highlights learning disabilities, my score was lower. The first test didn’t take into account the time restrictions built into the test.
My case illuminates the weakness of “test” and labeling. I am and never was a “label.” In fact, I never fit in a neat descriptive box anywhere. Labels are obstructive in most cases and used for convenience, less likely for the advantage of the (dis)abled. Whenever I garnered a “label” for one thing or another, I was treated as if that label defined me, as if I was whatever the label portrayed me to be.
One year at a gifted camp, the lead teacher was a “specialist” in learning disabilities. The teacher labeled me and sent home a detailed letter of my shortcomings, proud to help me. My parents discounted it, but the teacher didn’t. She treated me as a learning challenged problem that she was going to fix. And through her ambiance, the kids reacted accordingly and used me as their verbal battering ram. I was stupid. I was lazy. I didn’t belong in their gifted program.
Yet, this stupid kid produced an awesome project. The theme was music, and I created synthetic music scores to illuminate different emotional experiences. The project received much praise from the director and silence from the lead teacher.
This is about the time I began getting mixed messages about myself. I was brilliant and creative on one hand and stupid and lazy on the other. I could understand deep and profound concepts, but simple things such as money and time set my heart pounding and my hands shaking. It was very confusing and frustrating. It still is.
But I am lucky. I have always loved to learn. I prefer to visit a museum, aquarium, or zoo than a ballgame or a playground (although playgrounds were great to pretend to be a blood cell going through a blood vessel as you slide down a slide or a tornado spinning on a merry go round).
My mom tells a story that when I was three, I asked her if the mountains in our backyard were formed by the tectonic plates coming together, or were they volcanic? She says she had no idea (she has a BS in Chemistry) what I was talking about, so she said we could look it up when we got home. Apparently, I read the chart of the tectonic plates at a museum. Yet I am dyslexic. My learning disabilities are very real, often paralyzing, and most often confusing.
I have dyslexia but I read early and voraciously. However, reading out loud was an issue when I was young. I read my own way. I am not even sure now what that is. Phonics is indecipherable. I don’t think I memorized the words or the shape of the words. I just read.
I read Harry Potter when I was five. But I didn’t read each word, one after the other. My mind interprets and revises the words in print. My father figured this out when I was around four. He had me read out loud. I read, “The beautiful lady went to Madison Fifth Avenue to buy exquisite clothes.
He said, “Where does it say that?’
I pointed to the text.
“No. It says: The pretty woman went to New York to buy clothes.”
“My version sounds better.”
He agreed, but took an index card and had me read only a line at a time I read it correctly. My eyes see the word and my mind revises.
When I was four, I was given a huge Tonka truck. I said, “Thank You. Now I can do some momentum experiments.” I guess I was never very tactful. At least I answered. Most times I didn’t. My dad shrugged it off. He would say that I was deep in important thoughts. I didn’t waste my time. Which, I guess is not entirely untrue.
I couldn’t follow social small talk (it’s still difficult). Also, I couldn’t look anyone in the eye and talk to them at the same time. I understand now that it was too hard to focus on the conversation and their face at the same time. I didn’t understand it as a child, nor did I understand why it was so upsetting to people. Apparently, eye contact is important in our society. It is one of the socially conscripted norms that separate the “normal” from the “abnormal.”
Concentrating on conversations is difficult. Having to look people in the eye and listen at the same time can be impossible because I have Central Auditory Processing Disorder. My ears work perfectly fine, but something happens between my ears and my brain. The audiologist told me that my brain can’t hear. He also told my parents that he will look for me in the newspapers. They asked the doctor why– it was a strange comment for the doctor to make immediately after giving a diagnosis of severe Central Auditory Processing Disorder. He replied that as bad as my auditory processing was, he was amazed that I had gotten so far in life and he’s convinced that I’m going to do great things. This only added to the conflicting feelings I had about myself. It seemed like I was a two-sided coin spinning and wobbling out of control. What exactly did CAPD mean and would I be able to work around it?
Apparently, when everyone else pieces one word after another to form a sentence and then sentences together to form paragraphs, I need the gist of the conversation and my mind and then works backward. It starts with the overall context and breaks it into paragraphs, sentences, and finally words. Following a conversation that I don’t control is difficult for me. There is no way to fix this in a social setting unless there is acceptance and patience, which is hard to find.
I always loved words, especially my words. Poems healed me. By the time I was three, there were so many thoughts in my head that I needed to construct poems to clear my brain. When there were too many words inside at one time, everything became jumbled. They had to fly out. I didn’t know why at the time. So, I emptied my brain and dictated my words to whoever wanted to listen (and probably others that didn’t want to, but I couldn’t read facial expressions). My parents wrote these poems down on paper, napkins, their hands. It didn’t matter. When the cacophony of thoughts flowed, words flowed.
At first, they were poems about nature and the world. Then, fantasy worlds filled with magical creatures were created. When I studied philosophy through Montclair University’s program: Advancement of Philosophy in Children, I wrote The Sophia Collection, a series of philosophical poems from the mind of an eight-year-old child. As I got older, life became more complicated and challenging, and the poems became more personal, a way of helping me understand my brain:
(2007)
Deaf Brain
Agonizing, To listen; To Focus, Tiring. Words jump in Are they a code? Take them in, analyze Shake out their meaning Like apples on a tree. Hopefully, the truth behind them will be revealed.
Nature’s Fishbowl: Central Auditory Processing Disorder In a fishbowl Sounds saturated, Water logged While life all around Abounds. Once inside Trapped words Like a goldfish in a bowl Swimming in circles Pushing the limits, yet going nowhere. Drowning Gurgling Fighting A desire to escape, to become Part of life, Around the brain’s reef. Uncertain desire To enter the frightening world, Nightmare outside of the tide pool Where tentacles entangle the words. Perhaps, a compromise A safety net A cerebral aquarium Free but safe. Until words learn to swim without drowning.
Looking back on it now, my life was very different before and after my tenth birthday. My early years were splatted with challenges, such as my experiences at the gifted camp revealed earlier in this paper.
Another example that will be presented later in greater detail occurred Montclair University’s Gifted Program. It only happened in this one class, I was an elementary student studying with Middle Grade kids. I was bullied. Unlike the other program, the teacher admired my knowledge and enthusiasm, which might have been the actual problem. The kids were physically abusive. However, they never shattered what I thought about my intellect. I wasn’t stupid in their eyes, but to this day, I don’t know why I was targeted.
Those early years were filled with following my curiosity and learning. On my terms. I didn’t know my retrieval problems, short term memory problems, or “testing problems.” Dysgraphia and spelling issues, yes, they were evident. But being homeschooled, I was able to work around them enough to relieve stress and anxiety.
Stanford University changed everything. I had been taking Stanford’s EPGY – Educational Program for Gifted Youth- online writing program when I turned nine. The classes were online, with internet classroom discussions. I studied the craft of both essay and creative writing. One of the short stories I wrote through the EPGY program, Spruce’s Revelation, won a national silver title in Scholastic’s Teen Art and Writing Awards. I walked across the hall of Carnegie Hall, which convinced me that I lived to paint pictures with words.
This was in 2006, about the time Stanford University was developing a new model of learning for Gifted High School students, Stanford University Online High School (OHS), which is now the number two private school in the country. Their goal in 2006 was to hand pick thirty students from around the world that needed a more academic challenging High School. The minimum age for the pilot t program was fourteen/fifteen.
I was recruited by a Stanford EPGY writing instructor. When my parents said that I was ten at the time, they didn’t rescind my invitation. I was elated. I could learn in more depth. The classroom discussions were lively and intense. All of my fellow classmates had the same intellectual curiosity as I did. It was a perfect program for me. Until I discovered timed exams.
I never experienced this situation before. I couldn’t breathe. I couldn’t think. It is best described in the excerpt of my essay “Creative Tapestry,” which garnered my second national title with Scholastic Teen Art and Writing Awards:
My mind drifts… to a two-page book list with a syllabus and pacing guide adequate in preparation for the NY scholastic marathon. Mentally I type my nineteen- letter password to log into the live virtual classroom, and my mind is engaged with hurricane force. My enthusiasm escalates as I approach my first timed and highly pressured final exam. My head pounds, my heart pulsates, my windpipe becomes very sensitive. Like balloons being squeezed inside a trash compactor, my lungs tighten and my mind freezes. It is a blank slate, wiped clean with no information available. My hard drive crashes and freezes; the computer in my mind will not reboot. I sit still, unable to move, unable to conjure information any more complex than my name. My head pounds faster and faster, my legs are numb, and my hands are shackled under the control of a malfunctioning brain. (Scholastic Teen Art and Writing, “Creative Tapestry,” Blease)
Stanford University OHS worked with me and my family. After extensive testing with Drs. Eide, a plan including Speech Therapy, Vision Therapy and a Short -Term Memory program began.
Apparently, I never crawled, which is normally what ties the two halves of the brain together. Crawling, was the first thing the Vision Therapist worked with me on. The first couple times, fell flat on my face. I felt humiliated. Why was crawling so stressful? It got better as I worked at it. Cross lateral movements are important to connecting the two lobes of the brain together, and my lobes certainly needed connecting.
My (dis)abilities should have been evident to my parents when I started to write. I held the pencil with my left hand, wrote to the middle of the paper and then switched hands to finish the right side of the page. I couldn’t cross over the other side of my body with my left hand.My father thought it was great that I was ambidextrous.
After my experience in my first year at Stanford OHS, I started writing Wingfinger as catharsis. A different version of the current story, but in a lot of ways very similar to what it has become today. I found a journal entry that I wrote in 2010 illuminating why Wingfinger was originally “hatched”:
Journal December 2010 …Writing is my tool to understand the world…. Slowly, I tie together the pieces. As I write and explore, I develop a further understanding of the world. Yet understanding myself is a different matter. Can I learn to accept myself, including my learning disabilities? I hope that writing Dragon Valley is safe way to reflect on my experiences. Wingfinger, the main protagonist in Dragon Valley is an intelligent, but challenged pre-teen Wyvern Dragon…
“Wingfinger, you are late again!” shouts Mrs. Firebrain, Wingfinger’s exasperated teacher. “School starts promptly as the sun passes over the east side of the Will of Power Bridge. Why is it that you arrive when the sun passes through the center of the bridge, three out of every four days?”
“I’mmmm ssssorrrreee, Mrs. Firebrain,” stutters Wingfinger. “I, I, I coul—n’t fasstennn my global positioning around my neck correctly. I had to stop and fetch it a couple of times when it untied.” Wingfinger feels his cheeks flush with shame. He is a failure, he can’t tie his GPS computer, and he begins to wonder what is so—
Mrs. Firebrain interrupts, “What is so hard about tying your GPS computer? You put one strand over the other, and snake it up and under, then you yank it hard and make a loop de loop. The other strand swoops around the loop de loop, as it is pulled through, and, viola, a bow. What part of that don’t you understand?”
I remember my pediatrician telling me not to worry. I’ll be able to tie my shoes before I go to college. It’s inevitable. Well, to be honest, unless something extraordinary happens between Christmas and Labor Day, they were wrong. I still can’t tie my shoes. But honestly, I can live with no-tie shoes. However, testing under pressure remains an obstacle.
…Why am I so different?
Wingfinger… He pauses and looks into the stream… He looks at his reflection, shiny golden scales reflecting the sun’s luminescence, like electrical beams dancing. Every facet sends the beams a different direction, ping, ping, ping, bouncing off the scales like a pinball wizard. “Why must I be so different? And why does everyone mock me because I am different?” Wingfinger moans. “I wish someone could whisper an answer, because I don’t understand.”
And why is it so difficult to pay attention? I have ideas in my head that diverge in so many different directions; thoughts take me to many places that no one else dares to go, but at the same time they pull me in many directions, just like Wingfinger.
“Wingfinger! Are you paying attention?” “Sorry Mrs. Firebrain, I am trying to direct the unicorns in my mind so they are all cantering in the same direction, but half want to wander off on their own”
…Trying to understand difficulties of the characters I’ve created is a safe journey to understanding my own trying social challenges. It’s a little less threatening and much less overwhelming when considered in the hypothetical situation of Wingfinger. So, as an author, I transfer many of the problems that I have faced, and still do not understand, to my characters…
“Goldsnigger, Shiny Butt, and Swamp Critter,” call the other dragons. Wingfinger does not notice when one of the bully dragons carefully places his claw out and trips him. Plop, thud! Wingfinger is on the floor, his tray toppled on top of his head, his foot twisted the wrong way. “Ouch!” The tears on his amber facescales make him look like a circus clown….
Caesar attempts to slip a black refuse bag made of smooth material over Wingfinger’s head. The fright-flight system in his body takes over as every muscle tightens. Tensing with potential energy like a compressed spring, his muscles are ready to explode out of his skin. His heart begins to beat faster and faster as if it is running in a race. Bum-bum, the beat speeds on to a bu-bu-bumm, bu-bu,-bumm rhythm, pounding harder and harder against his chest wall. Then his wings begin to twitch and twitter, finally they explode out from his back, and slash at the dragons that approach him.
I still cannot understand why the students in my weekend gifted archaeology class attempted to place a garbage bag over my head. Was it because I was so much younger than them; I was 9, and they were 13- and 14-year-olds? Or perhaps it was my difficulty with the artistic portion of the class? I cannot understand why it is so difficult to make friends. My brain jumbles conversations, making them difficult to follow. So, I try to control the conversations. I work hard at understanding what I have heard. In academic settings, I am able to compensate. I do all the preparatory work, all the reading before class, and I follow quite easily. This is not the case with social settings, since life is not taught through a textbook.
Will I ever understand how to engage in the social world effectively? I want to fit in, but at the same time I want to be different. And, I don’t know how to fit in, even if I wanted to. I don’t know how to begin to shape myself into a socially acceptable teen. I often wonder what it would like to be “normal,” and I know that even though my dad embraces me as I am, my mom would like for me to be a little more mainstream than I am.
Those thoughts were penned almost ten years ago. It was about the time, I decided to shelve Wingfinger and work on other stores and screenplays.
Wingfinger hibernated for over six years, but was always in the back of my mind. It has become a story nagging to be told. But, now my reasons for writing Wingfinger are different. I have overcome many obstacles in my life to get to the point where I am today. I am proud of myself, and know I should be. I work hard. I did not let my (dis)abilities define me. Obtaining an MFA at the age of twenty-one is proof. I now view my (dis)abilities differently; I see myself in a more positive light. I am not my limitations, but proof of what one can do with hard work and perseverance. My difficulties and obstacles will always be lurking, but I know if I change my approach and reactions to the obstacles thrown at me, I will always find a way to succeed. And the obstacles keep coming. I found out the reason I have learning (dis)abilities- a year ago I was diagnosed with Myotonic Muscular Dystrophy. It explains why my one calf muscle has atrophied and why I am so tired. It even explains why I have severe sleep apnea and restrictive breathing issues. They are just more obstacles that I need to work around, more challenges to accomplish my goals.
When I was younger, I didn’t think anyone else experienced problems as paralyzing as mine. I was alone in my struggles. No one could understand my challenges. Books with (dis)abled characters were not easy to find when I was growing up. I didn’t have a character to admire as a role model.
Today, Children’s Literature has been changing. (dis)abled characters are beginning to appear in print. More characters are needed, especially within the genre of Fantasy. Wingfinger not only exposes a story about developing self-confidence when all the odds are against you, but also introduces several other important themes: abilities and (dis)abilities are socially constructed and what is normal in one society may not be in another. They are closely tied with prejudicial ideation. And, your self-belief and self-worth is sub-consciously developed through a lens of a Looking Glass Self- one thinks of themselves from the reaction of others, not through some raw truths. Also, another very important message is that if one changes their reactions to bullies, obstacles and challenges the outcome can be different. Finally, belief and self-confidence go a long way in handling what life throws at you and true friendship and loyalty often comes in unexpected places.
Middle Grade readers are at a difficult stage in their life. They need to read books that reflect their struggles, presenting stories that weave plot and characterization through an optimistic and accurate lens. Wingfinger offers this and is wrapped in an epic adventure story with dragons, basilisk, and other compassionate monster-like creatures.
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