Amy Brothers is a visual journalist and essayist. She believes stories should be told in the medium that fits them best. Her current work focuses on the struggles and strengths of dyslexia. The following essay describes her personal experience with dyslexia. Some of her other work can be found at amybrothers.com
An Essay by Amy Brothers
It was time to face what was inside. First page, “Your permission is requested to conduct the following evaluations… cognitive, social/emotional, physical, communicative, educational, life skills…” There they were: four typed pages, evaluating my personhood. Everything that was deemed “relevant” squeezed onto only four pieces of paper. The folder’s thinness seemed to reflect my insignificance.
I don’t remember when the word dyslexia entered my vocabulary. It seeped slowly into my consciousness until it became something I’d always known. There was no beginning, and there seemed to be no end.
Dyslexia an invisible condition that means it will take hours of extra work just to be average. It affects a person’s ability to decode (read), encode (spell) and pronounce language. It tends to be understood differently depending on who is defining it. In the same way a make-up artist sees someone’s eyes as a canvas, but an optometrist views eyes as a biological organ that must function properly for sight. A neurologist looks at dyslexia and sees a brain that is underactive on the left side when reading; a neurobiologist, meanwhile, looks at the firings of the brain and sees dyslexia and autism on opposite ends of the same spectrum. A teacher sees how dyslexics impact her lesson plans. And a mother sees it as the reason why her child hates school. These competing views have spawned a mess of theories.
My folder contained my version of this mess. It would tell me if I had been predicted to succeed in college. I’d never read it till now. I’d always been afraid to read in type that I had problems, that school would be harder for me than for most. I feared a self-fulfilling prophecy. But I had since gone on to graduate college with honors, summa cum laude. I had a piece of paper, a diploma, proving I had conquered whatever was said here. But still there was this nagging idea in the back of my head that my success was not real. Not finding a serious job after college seemed to prove that. I knew I had to face the folder to believe I could move forward.
I looked down and shivered at the first verb, “Amy is…” I stopped. Is the verb seemed a declaration of my value. Even though I was alone, I looked around the living room of my apartment with its second-hand tan couch and mismatched brown armchairs. My three roommates were out. Good. Whatever my reaction to “is” was going to be, I didn’t want witnesses. I exhaled slowly, and let my body settle into the floor. I breathed back in. It was a strange thing to see oneself reflected in the mirror of someone else’s typed truths.
I set the four pages, stapled in the corner, in front of me. “Amy is a 17 year old female…” Okay, not so bad. My eyes ran over the next paragraph. “Amy was evaluated for a suspected learning disability and was subsequently identified with a Perceptual/ Communicative Disorder that impacted her ability to maintain grade-level reading and writing skills…”
I already knew this, but the rush of blood to my ears was louder than the sound of the refrigerator. It was shame, a feeling familiar to anyone who has trouble keeping up with the status quo. What I didn’t know that day was how common this feeling is among people with learning disabilities. I hadn’t talked with other dyslexics about being dyslexic. But since then I have, and the more I’ve learned about dyslexia the more I see two competing narratives: one of epic failure and one of epic success.
I’d felt like a failure because of how hard I’d had to work to appear to be average. People who can’t read well are excluded from society. It’s as if their minds have locked them in a room they can’t get out of despite their best efforts; they get depressed and angry. One academic study analyzing suicide notes of high-scholars found that over 80 percent of the notes had mistakes similar to mistakes made by students with learning disabilities. Other studies showed that as much as 30 to 60 percent of the prison population might be dyslexic. Reading is not only a prerequisite to all education after the third grade, but also to most entry-level job opportunities. Even getting a driver’s license or ordering off a menu requires the ability to read. What kind of life is left for the illiterate? Statistically one in five people have dyslexia; this condition affects a lot of us.
The other narrative, the one of great success, calls dyslexia a gift. If you Google famous dyslexics you find names like Alexander Graham Bell, Pablo Picasso, Richard Branson, Steve Jobs, Steven Spielberg and many more people who have had a profound influence on the world. Studies have been done and books written about the inherent advantages of dyslexia. In the Dyslexic Advantage, Brock L. Edid and Fernette F. Eide explain that dyslexics may be weak in two-dimensional awareness but they are strong in three-dimensional spatial understanding; they may be weak in fine-detail processing but they are good in making connections and seeing the big picture. Dyslexics understand ideas through stories and can use past experiences or stories when problem solving but they also have weak short-term memories. They process information slower but excel at recognizing patterns and predicting outcomes.
I would not read that book for a few more years, but sitting in my apartment that day reading my file, I felt that I could easily end up in both narratives. I’d had professors and classmates tell me I could think well and bring insight to conversations. But being dyslexic also meant I couldn’t keep my papers free of spelling mistakes. I’d spell wedding “weeding” and wouldn’t realize it. I’d read my writing back, even out loud, and just read “wedding.” Spellcheck can only catch so much. My mom told me to tape the word “definitely” to my computer because it Autocorrects to “defiantly” and I don’t ever notice. Even when I realized I had the wrong word, I’d have to type it in the Google search bar, within the context of a sentence or with words of a similar meaning, to make sure the word was right.
I remember the first day I noticed I really had trouble with spelling. It was in 4th grade and my friend Caleb had found my journal. The journal had a white horse with a brilliant blue, green, pink, and yellow mane on the cover. I’d filled it with my 8-year-old life. I’d drawn a unicorn with a waterfall and a rainbow, I’d written about my worst nightmare, my first poem about the snow, and a cartoon dog that my friend had taught me to draw by starting with an upside-down heart. We were playing with our younger sisters in my parent’s attic when he found it.
“Is this your diary?” he asked.
I didn’t want to look too girly in front of him, so in my most grown-up voice I said, “No, it’s a journal; there’s a difference. Diaries are full of silly boy-crush stuff. This is serious. It’s full of things that matter.”
He flipped through the pages. It made my heart pound but I had to let him. I had to prove I was above silly girl things.
“Ha,” he said and pointed at my colored-pencil unicorn.
“I might be an artist when I grow up,” I said.
“I thought you wanted to be spy or a detective,” he replied.
“I do, but it’s still a good skill for a spy. It could be my cover.”
Caleb shrugged and flipped the page and started to read my poem about the snow. To my horror, he read out loud. “My - boats crun-sh on the new snow.” For a moment I hoped he might like what I wrote. But the hope melted at the sound of his laughter. “Boats, ha, boat. Your boats crush on the snow.”
“Boots,” I corrected in a small voice.
“No, it says boats,” he said.
Hannah, his younger sister, looked over his shoulder, “That might be an o.” I grasped the truth in an instant; bad handwriting was better than misspelling. “Yes it just looks like an a, but it’s really an o.”
Caleb kept reading. He pointed out all the misspellings a fifth grader could find. After a while, I stopped trying to defend every mistake and just waited for it to be over. It was my first realization that it didn’t matter what I said; if it was misspelled, no one would take it seriously.
But I wasn’t in the attic now. Whatever was in this folder, on these pages, was different. This was what grown ups thought, not my fifth grade friends. I thought back to the evaluation. I remembered there were three parts. There was a physical exam, a person who asked me personal questions, and another person who evaluated my intelligence.
“Amy you’re 5ft, 4in. 105 pounds?”
“Amy can you repeat these numbers back to me; 17, 10, 45, 6, 18?”
“Can you do it backwards?”
“Amy, can you arrange these blocks into this shape?”
“Amy let’s talk about your home life. What is your relationship with you father like?”
“And your mother?”
Instinctively, I mistrusted these questions. What did they have to do with a learning disability? They felt like insults disguised as questions. It was my responsibility to prove their implications wrong. Now I understand these examiners were simply checking off a list of things that weren’t causing the problem. They were searching for the reason behind the low-test scores on my PSAT. The evaluation was like my algebra homework: they plugged my answers into equations till they found what x equals. But reading their conclusions made me feel small and painfully ordinary, like people who never leave their hometowns, like people who want to grow up just to buy cars, like people who go just far enough to be comfortable. I wanted to do more or at least have a chance to do more. My hands looked slender and thin on the folder. I noticed the scar on the back of my right hand, three freckles on my left, blood pulsing underneath both. I felt the blood pumping through my small ordinary body to my brain with its bad short-term dyslexic’s memory. I was not so easily defined. I rebelled against the inevitable. I was more than four typed pages, no matter how personal the questions.
I remembered how strange it was to be asked about the relationship I had with my mother. How does any adolescent in high school understand the relationship she has with her mother?
“Your mother?” they’d asked, “What’s your relationship with your mother like?”
“It’s fine,” I’d said.
And it was, my mother had a background in nutrition and advocated for the health of everyone she met. This meant the only time we had soda pop or sweet breakfast cereals was sleepovers and at grandpa’s house. When I reached fourth grade, my mother decided to homeschool my three sisters and me. She turned our daily life into a series of experiments and learning opportunities. We were assigned a night to cook dinner for the rest of the family. We’d pick our favorite meal and she’d make sure it had the right amount of vegetables and proteins. I chose burritos and then on a yellow sheet of lined paper I’d write, “tomatto, tortyea, bens, shees”
“What’s this word? Tort-ye-a….Oh tortillas,” she’d laugh. “It’s tor-till-as.” From then on instead of pronouncing tortillas, she’d say it like its spelled tor-till-as. In the store we’d hunt down our items. For the beans she showed us how to look at the price per ounce. “Is it cheaper to pick two small ones or one big one?” We would flip over the plastic containers of sour cream to read the ingredients. She read to us “cultured cream” or cultured cream plus a lot of words I didn’t understand but knew were bad by the way she spat them out.
At home, she’d let us loose in the kitchen to make dinner. “Before you leave for college you have to know how to feed yourself,” she’d tell me. I was in sixth grade. I’d start out with confidence, but then falter: who really knows how much salt to add to ground beef? “Mom, taste this!” Soon I had used up all the dishes, eaten most of the grated cheese and half the beans had fallen into the stove burners. I’d proudly present the burritos at the kitchen table. I don’t know if they were actually good or not, but mom said they were.
But I hated when my mom talked to other people about my dyslexia. And I hated when she tried to make me read every day. I hated every minute of phonics. But now, folder in front of me, I was beginning to see that she had taught me more than I’d realized. It had little to do with phonics and everything to do with teaching me how to live.
It would take me a few more years before I was ready to talk to her about it. But afternoon I phoned my mom. After raising two dyslexic daughters, she was now working as a teacher and a tutor to dyslexic children. I wanted to ask her about when they first realized I was not learning like other children. The phone rang. I realized that I was nervous to talk about this. Although we had had many conversations about dyslexia, we had never talked about when I was first diagnosed as having a learning disability way back in kindergarten. I had no memory of being told I was dyslexic by my parents.
About half an hour later I’d learned dyslexia was one of the reasons she decided to home-school me. She told me of a time she visited my special-ed class. I don’t remember it being called this but I do remember being with my classmates for most of the day and leaving with a few other students for a special reading class. I remember two things about the class. My teacher drawing an “a” and an “e” with arms and legs holding hands the “a” had a word bubble, “When two vowels go walking, the first one does the talking,” she said. To me it looked like the “e” was kicking the “a” and the “a” was crying out “hey.” The other thing I remember was that every Friday we got to make a snack, once she even brought a toaster oven in and melted sugar over bananas and graham crackers.
What my mom remembered is that there were too many kids with different learning issues and only one teacher.
“There was no way one teacher could teach all these kids,” she said over the phone. She’d talked with the teacher and the teacher had said she was better off tutoring me herself, adding that if my mom told anyone, she would deny she said it.
“I didn’t blame the teacher or the public schools; it was an impossible situation. Ideally you should get help and there’re all kind of laws on the books, but in actuality, it doesn’t happen.”
Over the phone mom sounded slightly hesitant as if she was choosing the right vocabulary, as if she was still protecting me from something. I felt a subtle shift in the way we were talking, not as a parent and child but as two adults. I asked my mom if she’d ever felt like fighting the system and asking for better accommodations.
“I wasn’t going to make you go through the ringer as a child growing up. It’s just not right. Plus, this way I could teach you according to your strengths.”
And my mom did. She read history books to me and focused on the sciences, something I always found easy to understand.
As we talked, I sat cross-legged on the bed and looked out at the power cords coming to the building. After a pause mom added, “And I didn’t have the energy to fight it, but maybe I do now. There are kids out there who are not going to get it [the help they need]. It’s like they’re robbed of something everyone takes for granted.” Having a mom who can fight for you makes all the difference between making it and falling though the cracks. But not everyone has a mother with the economic resources or time to do this for her children.
“But how are your classes going?” she asked over the phone. The conversation shifted to how I was doing now. And ended with her telling me to make sure I was sleeping enough and eating right. She was still mom.
Back when I was evaluated, the questioners hadn’t asked about how my mother taught us how to cook, so I didn’t tell them. I’d answered, “Fine,” and we’d move on to the next set of questions.
Now, I laid on my living room floor, watched sunlight move on the scrub oak leaves outside then looked back down at the folder and read the next page, “Cognitive test results…” I don’t know what the numbers mean. I focused on words: “Amy’s general cognitive ability is within the Average range of intellectual functioning…”
It was so much worse than I’d expected! I felt so ordinary, so dismissed. I jumped down the page and found “…further evidence of weak mental control.” I found the paragraph about my weaknesses. I couldn’t read it carefully, but words like “short-term,” “auditory memory”, and “concentration” come in so fast they were out of order. I set my jaw and flipped to the last page titled, “Conclusion.” The first paragraph was something about my future plans and the last said: ”…age-appropriate cognitive functioning... weakness in working memory...significant implication for her post-secondary education.”
I shut the folder. Significant implication. I imagined this version of “is” as my first impression. It made me feel small and painfully ordinary. Significant implication for her post-secondary education. But I did graduate college. I had been on the dean’s list for seven semesters. True, it took me five years to graduate and I needed time and a half on tests and was allowed to use a calculator, but still, so close to a 4.0. I remembered checking my grades on the computer after my first semester. Three A’s and one A- I thought they’d be B’s and C’s.
Success is a fragile state for anyone. For a moment, as I looked at the file, my work and academic triumphs in college didn’t seem to matter. As a dyslexic I had learned that my life could come crashing back to “incapable” in seconds. I’d worked at a photography studio for seven years, and by the end I was in charge of designing all the promotional material. One day I had written a paragraph for a wedding magazine. I had researched the language of wedding photography and was proud of the design and the wording. But when my boss read it all she’d said was, “God Amy, did you fall asleep during every spelling class?” I crawled into a shell feigning indifference, hiding my humiliation. I didn’t defend myself. I had spent hours in special reading and spelling classes; I had gone over what I wrote three times before I showed her. I had even read it out loud. But it didn’t matter. My spelling mistakes had discounted everything. She rewrote everything, and I didn’t argue; she was the boss and my paragraph was flawed. I’d felt stuck, sinking inch by inch into the mud of an uncertain life. I had no idea how to prove to myself and other people that I was capable of more.
But now, lying on the floor with the cream-colored folder in front of me, I looked at the verdict of “significant implication.” I knew I’d have to be proving myself for the rest of my life. Having dyslexia meant that at any moment I could be thought of as “lazy” or “incompetent.” In the smallest moment, I could lose months of work and professional reputation.
I’d read it. It was done. I’d faced a professional’s evaluation of my weaknesses and, had not fallen apart. I would not read the folder again. I would use it only if I needed to prove to a school that I wasn’t being lazy when I couldn’t catch spelling mistakes. That is the only authority I would give the folder in my life. I might have been expected to fail or to barely make it. But I also knew it was possible for me to make great burritos even if I couldn’t spell the ingredients right.
Recently I learned that the word “failure” comes from a word that means to come before. And this is the lesson dyslexia has taught me: failure is never the end; there is always something that comes next. I had to learn early how to compensate; I became hyper-organized and a master of the to-do list. I learned how to manage my time, how to mentally allow myself more time. I also learned how to think well, because if you are going to have spelling errors in your papers it better say something worth reading. I learned how to keep working even when the world tells you your chances of success are slim. These are not life lessons for dyslexics alone, but dyslexics have to learn them early in life. Dyslexia is as responsible for my success as it is for my failures. In this way I see dyslexia made me who I am.