A Disorder of Written Expression
I am not afraid of doctors.
Sitting in the only unoccupied chair at the allergist’s office—straight-backed and wooden, a torture device more fit for my late granny’s dining room—what I must grapple with is my fear of paperwork. It’s my first time here, there are four full pages of questions on the clipboard in my stiff, shifting lap, and what I am experiencing is not fear in quotation marks. This is not the setup for an insurance joke or commentary on today’s tragic mix of bureaucracy and medicine. This is real, sour stomach fear.
Sweating fear.
Uncertain about the letters that make up the word “university”—which ones, their order, their number even—I write “college,” squiggling a curve between the “l” and “g.” Something vowel shaped. Afraid to misspell “husband,” I write “spouse.” My occupation is “teacher” and not “instructor” because I never feel solid about the ending “o,” the ending “r.”
I waffle.
I let my cursive peter out, become a wiggling line that can be read as absolutely any combination of letters. I squirm. I fidget, sliding my thighs in the stiff chair like a child caught in a lie. Every bit of this experience is a part of that lie. Writing the name of my state, the names of my past afflictions, the names of my body parts and ailments—none of it is easy. Each letter, each answer, hard. Despite my degrees, my publications, my career at the head of the classroom, I can’t spell the simplest words.
I fear someone will see this on these pages. Find out. See me. Someone will know.
*
It was 1985 or ’86 when my middle school sat us down en masse and provided each of us a placement test that came with a fresh No. 2 pencil and a tight eye on the clock. Soon after, I was sent to the school counselor, a man I don’t remember well. During my time at the school, he said very few things to me, but there is a vague sense of hatred that comes reeling back when I try to imagine his face, the way his hands set on his desk, the timbre of his voice. His office was very small, his desk very large.
In my mind, he is like the furniture, outsized and bland. Cold and functional. “Your reading is quite advanced,” he said. “An eleventh-grade level, at least.”
I sat there, a little thing in front of that sturdy desk. Very proud. It was the sort of compliment I’d brag about when I felt stupid later.
I spent a lot of time feeling stupid, enough to plan ahead.
He must have shaken his head and frowned, must have been worried about delivering the rest of his news. A man in his position could not possibly have been the villain, the B-movie sadist I see in my mind all these years later. I can’t imagine that an adult who’d chosen to devote his life to children smiled when he said, “But you have a first-grade writing level.”
But this is the way I remember it, him smiling. Somehow victorious.
I was in the fifth grade. Still, the insult was no huge surprise. Any time I passed a spelling test, it was cause for great celebration at our house, and enough people, children and adults, had laughed at the way I wrote for me to keep secret the little poems and stories I liked to jot down. Usually, only my mother saw them.
The counselor went on, explaining that I needed to talk to my parents about attending a school for gifted children several days a week—“You probably won’t like it,” he said. “Girls don’t do very well in Gifted.” There would be no discussion, however, about the fact that from that day on, whether my parents decided to send me to Gifted or not (and he made quite clear that they shouldn’t), I’d leave my normal classroom during spelling lessons. In order to “catch up,” I’d be sent to one of the first-grade classrooms. For an hour or two a day, I’d leave my friends and teacher behind and learn how to spell with the babies.
It was soon apparent that no one had told this plan to the teacher whose class I joined. She had no idea what to do with me and wasn’t even necessarily teaching spelling at the same time as my normal teacher. She told me to sit in the back of the class, handed me a workbook, and that was that.
Today, I don’t even know her name.
*
When I tell people I have a learning disability, they generally cock a concerned eyebrow or a compassionate smile. “Dyslexia?” they say knowingly, a sturdy sort of sympathy in their voices. And I want to say, “I wish.” I don’t, of course. I don’t say it, and I don’t wish it. Dyslexia can be devastating and is generally far more debilitating than what I deal with. But it is a known quantity. People understand it, believe in it. Dyslexia exists. It has existed since long before River Phoenix adorably taught America all about it on the ABC Afterschool Special Backwards: The Riddle of Dyslexia.
That was 1984.
A year or so later, the same year I was sent to what I began to think of as spelling jail (for my crimes against words), there was a boy in my class who, just like River’s character Brian Ellsworth, was dyslexic. He was equally adorable, and I had a crush on him. Like me, he left our class several times a week. But he went to the Special Education lab, and though I knew being labeled a “SpEd” was no fun at all, I envied him. It was definitely better than being the only ten-year-old forced to squeeze into a first-grade desk.
That boy in my class—let’s call him Brian in River’s honor—did things in the SpEd lab. I don’t know exactly what things he did, but I know that while I was in the first-grade class doing nothing, he was doing something. I peeked in on him when I roamed the halls, whether I was on my way to flip through a spelling workbook or sprinting to the bathroom, hall pass squished in my fist, or (eventually) hurrying to the bus that would grant me sweet freedom at the Gifted school my parents did decide I should attend. Wherever I was going, I would stop and look in on the SpEd lab. I was fascinated. A bit obsessed.
I stood to the side of the door so the teacher wouldn’t see me. “This isn’t a zoo,” she said when she did catch me, “and it isn’t nice to spy.” But I wasn’t spying so much as wishing. Wishing I was Brian. Wishing someone was helping me. What I knew, thanks to River and my love of after-school specials, was that despite what other kids said, the SpEds weren’t dumb. Their brains were just different. I wanted to be like that.
I wanted to be not dumb.
*
I didn’t have a disability back then.
I did, of course. As far as this issue is concerned, my brain has probably changed little since the ’80s. Over that same period, however, both the diagnosis and recognition of learning disabilities have changed quite a lot. When I was a child, my disorder was a unicorn. A figment of the imagination. Or more accurately, it was a like the giant panda, prediscovery. The people running into big, walking, stuffed animals in the Sichuan mountains certainly knew giant pandas were real. But everyone else shook their heads in disbelief and told the panda spotters to stop playing games, get to work, and try to live up to their potential. Or something like that.
The year I was born, premature, jaundiced, and covered in dark, downy lanugo (a furlike fuzz that made my mother think of a spider monkey), Congress enacted the Education for All Handicapped Children Act of 1975. In “The Learning Disability Mess,” Ruth Cockler explains that, even then, a key supporter of the bill noted that “no one really knows what a learning disability is.” This left those people who suffered from one with a real problem. Even our greatest supporters found our ailments nebulous. Everyone else was going to be a very hard sell, and still is. The more nebulous the manifestation of the disorder, the more problems a person has getting covered by the law. Children like Brian have a very specific set of easily agreed-upon symptoms that fit a pattern with a long history of study. Dyslexia was, after all, the first learning disorder to be described (as “word blindness,” in the 1800s).
But not all learning disorders manifest so neatly.
*
My mother took me to get tested a year or two after my meeting with the counselor. The school’s attempt to catch me up had yielded no improvement (shockingly), and she was hoping to finally get a real diagnosis. Now, sitting in my car, waiting for the rain to stop pummeling my windshield, I call her to ask about this. “They said you were fine. Didn’t have dyslexia,” she says. She sounds unhappy, guilty maybe. My mother is a small woman, with fine, wispy blonde hair always pulled into a ponytail. It’s her birthday, and I’ve made her feel bad. I have terrible timing. “I guess I was stupid,” she says, “to listen.”
The rain has mixed with road grime and turned my windshield into a terrible Rorschach test. “Not stupid, at all.” I try to will her to hear that I am smiling. “I mean, I don’t have dyslexia.” In the blurred windshield I see a donkey’s ass. I see myself ruining my mom’s birthday.
“I know,” she says. I can feel us nodding at each other through the phone.
*
I took that test in a simple room in a Miami office building. The woman and I sat across from each other at the sort of table adults have meetings around. I once again felt small. She asked me how I was, some questions about my life, my mood, my general state of being, and then moved on. “Do you know what a belfry is?”
“Bats in your belfry,” I remember saying, because it made her laugh. I liked that about her, that she could laugh. “It’s maybe a bell tower? A place where you would find bats?”
“Good.” She moved on to more vocabulary, and I wondered what it all had to do with anything. At one point she asked how many miles there are between New York and California. I had no idea. This was not the sort of thing covered in my elementary and middle-school classes.
“There are 2,000 between here and Louisiana,” I said. “We go there every year for Christmas.” Then I held my fingers up. Imagining a map, I pinched the air between Miami and Baton Rouge, tried to think of the length of space between the two. I carried that bit of empty air over to an imaginary New York, tried to count how many of those I’d need to get all the way to California. Whatever number I came up with, my math was off, of course. “Well, that’s not right, but I’ve never seen anyone try to figure it out like that before,” she said. She had me read a passage to her. There was a spelling test later. She asked me to write a paragraph. There were puzzles. Other hoops.
In the waiting room, she told my mother I didn’t have a set disability. I didn’t fit into any of the categories. “But she can’t spell, and if anyone tells you they can teach her, don’t waste your money. It isn’t likely she’ll be able to learn.”
*
Learning disabilities were added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980, and the DSM has (fairly drastically) changed its definitions of the disorders in subsequent editions. Additionally, Cockler tells us that legal definitions and guidelines for diagnosing the disorders have been mostly separate from clinical definitions and diagnostic guidelines. It’s almost as if the lawmakers and lawyers have not bothered to talk to the professionals and scientists. But this is not the worst of it. Each state has its very own, unique set of guidelines, meaning that symptoms in one state at one point in time may result in a child receiving a diagnosis and mandatory educational support, while the exact same symptoms in another time and place produce nothing for that same child but an end-of-visit lollipop and a pat on the head. For example, Cockler points out that “in 2008, 15.4% of all disabled children met that definition in Kentucky while 60.2% met that definition in Iowa.” That is a huge gap. As with real estate, location is everything. Whether or not a child is labeled “learning disabled” or just “stubbornly stupid” seems to be mostly based on where he lands in space and time.
*
I asked my mother if she always knew. We were in the car, on our way to the mall to stroll and enjoy each other’s voices. Or, maybe, we were still at her house, both of us famished and ready to go, but running our mouths anyway. I can’t quite remember, because what sticks about that day, instead of the concrete details, what I remember clearly despite everything that is fuzzy, is the way she nodded throughout. Her head moving easily. This conversation no big deal.
It’s the reason I survived being different. She’s always been easy about my problem, matter of fact. From first grade on, she taught me mnemonic devices and other little tricks that kept me from being held back in school. She never hid from the idea that I needed extra help. Instead, she turned studying for spelling tests into songs and games.
“I had to find a different route. Something better than what the teachers were doing.” She laughs. “No, I’m serious. It sounds stupid, but I had to figure out a better way to teach you. So, let’s say you couldn’t spell ‘cat’—well, you could always spell ‘cat,’ I guess. But, let’s say it was ‘cat.’” She starts to sing. “Cah-cah-ah-ahh-ahh-att-att.” It is not a pretty song, but I bob my head. Something deep in me responding to the familiar, halting tune. “I had to find a way to keep you going.”
“Did you pretty much always know?”
“I knew you were different, yeah.” She said something about how, even as a baby, I seemed smart enough to talk to like a friend.
“Not that.”
“I know.” She nodded again. A small strand of hair, new growth at her crown, light fluff like a newborn’s, bobbed with affirmation. “Yeah,” she said. “I knew you were different.” Then, her face changing, her tone changing, the easy part of her leaching out and leaving something that looked and sounded like pain, she said, “I got you tested.”
It is what she always says when we discuss this.
*
My mother worries that it is her fault that some things were harder for me than either of us would have liked, that it is somehow her fault that I didn’t get diagnosed sooner. But, of course, it isn’t. What were called “learning problems” when I was young did not even exist in the DSM until I was five, according to Susan Martin Robbins, a professor of social work who has made a study of the history of the DSM. Robbins tells me that, while an early version of the disorder I would be diagnosed with in my twenties existed back then, it was not in the childhood disorders section of the manual. “Hidden under ‘Specific Developmental Disorders’ there was a category for Developmental Expressive Writing Disorder,” she messages me on Facebook. It was added to the DSM III-R in 1987, a couple of years after my visit to the school counselor and just around the time I was tested. According to Noel Gregg’s book, Written Expression Disorders, it took years for diagnostic models for this learning disability (models that rarely agreed with each other) to be put in place. The reason I went undiagnosed is simple. At the time, my disorder was undiagnosable, a great panda only my mother and I and others like us could see.
*
On the first day of my college freshman composition class at Southeastern Louisiana University, my teacher, a large woman spilling over a small, three-legged stool, explained that our essays would be written in class. By hand. Trying to indulge neither the fight nor the flight response her words inspired in me, I stayed after class to talk to her.
“Does spelling count on our essays? I have trouble spelling,” I said.
“If you have a disability, you need to give me your paperwork.” It was neither a kind statement nor a mean one. It was fact.
“I don’t. It’s just”—I wanted to say, it’s just that I’m an adult with a first-grade spelling level. Instead, I say, “I don’t spell very well.”
She doesn’t look up. Doesn’t scrutinize my face. There is neither ridicule nor sympathy. “Of course it counts. Use a dictionary,” she says. She leaves the room.
If you don’t know how to spell a word, can’t pluck the first two or three letters out of the ether, then a dictionary is not much help. If you aren’t even aware which words you know how to spell and which you don’t, if you have no idea which to try to look up, then a dictionary won’t help you at all.
It is my second time attempting to start college, and I tell my boyfriend that I am quitting school again. I am an English major. I will not be able to pass English. I cannot stop crying.
“Talk to someone,” he says, every time there is a break in my sobbing. Every time he says it, I shake my head, go back to crying. He waits, says it again. We do this for a while. His dogged patience is one reason I later marry him.
Finally, I say, “Who?”
“There has to be somebody.”
He’s right. There’s Dr. Ply, my advisor. She is a tall, tall woman, in bright, flowing, beltless dresses.
When we meet, I stoutly refuse to stop crying while I try to explain my predicament. It’s hard to talk because I’m hiccupping between sobs. I am a melodramatic mess. It must have been most unpleasant for Dr. Ply, who shows no sign of aggravation. She hands me a tissue, looks up my teacher’s name. “Ah. Her.” It is not a nice word coming out of Dr. Ply’s mouth: Her. “You need a different teacher.” The sharp nod that follows is like my mother’s. It says that this is not a big deal. “Dr. Anderson has a son with a learning disability. And she likes to use computers.” I will have to switch from a composition class focused on literature to one focused on business. “But that’s fine, right?” she says. In Dr. Ply’s mouth, this isn’t a question.
Just that quickly, everything changes.
Dr. Anderson is perhaps not very personable. She seems to like computers more than people. She holds all her classes in the computer lab and every day asks us to email her, our classmates, and members of another freshman class at another, faraway university. It is my first email address. There’s no graphical interface. It’s DOS-based. The bells and whistles we now enjoy are nowhere to be seen. Including spell-check. It’s not long before Dr. Anderson emails me to come see her after class.
“I think you have a learning disorder,” she says. She’s a blunt woman. “You make the exact same mistakes my son does.”
I explain that I was tested as a child. I am not learning-disabled.
“You should be tested again,” she says. “You won’t pass the proficiency exam without accommodations. They will fail you.” To move out of freshman English, I need to pass the proficiency exam, which includes a timed, written component. It’s blind-graded by committee. Dr. Anderson will not be able to help me pass it.
It all seems impossible. I don’t have insurance.
“Can you get together a little money?” She tells me that Louisiana State University has a program to test people like me. People without insurance. People who need help. The fee is tiny compared to what the battery of tests would normally cost. She’ll call them for me. She will help me.
It is 1996, and I am twenty-one years old when I am diagnosed. I’m given the news over the phone: “You have what we call a disorder of written expression.”
The clinician explains there was evidence of my disorder in the math portion of the exam as well, though to a much lesser degree. “It has to do with symbol recognition. You may not have ever noticed, but it’s a problem in your reading, too.” She tells me the issue manifests with small units. It is at the word level that I have trouble, but I am fine taking in whole sentences and paragraphs, where my brain uses context to fill in rough spots. It can’t do that to help me spell.
Disorder of written expression.
The words were strange and beautiful. And they had an unexpected effect. Before the diagnosis, I never believed I could be a writer. I wrote story after story, poem after poem, but I believed it could never be a career.
Dumb people are not writers.
But finally, I was not dumb. Like Brian, I was just different.
*
Being diagnosed did not suddenly fix my problems. There was no SpEd classroom to slip into, no time machine to let me join Brian in getting help. But putting a name on it helped me lean into the coping mechanisms my mother had taught me as a child, and then to research new ones. I became interested in learning about learning. In the brain.
I became interested in teaching.
I started to write with discipline and care and proofreaders. I had not bothered before. I had simply believed there was no use in even trying.
These days, spell-check is everywhere, though it often has trouble understanding what I’m trying to type—unable to offer any guess at all. And when it does manage, I often have trouble figuring out which suggested replacement is the word I need. It does make life better than I could ever have imagined. There’s also a carelessness to the internet that makes it easy to hide online, a crowd of bad grammar, bad spelling, and poor communication that I am both grateful to disappear behind and yet don’t want to be associated with. Still, I get skewered pretty regularly. People seem to take extra pleasure in finding a mistake in a teacher’s online post. But that’s okay. I can handle a bit of laughter at my expense. Now.
Mostly.
I’d be lying if I said those mistakes no longer define me. They do. But so do many other things.
*
A few years ago, a new colleague gave me a lovely compliment, which I did not take with grace. “You’re a natural writer,” she said. Instead of thanking her, I spat my water across the table in a fit of laughter. Some of it stuck in my nose, burning and demanding attention. I’m not sure I made a very good impression.
I don’t know exactly how I got here, a professional reader and writer, but I am sure I was not quite born to it. In fact, I don’t believe the popular idea that some are born to the page. Many of us struggle to get there. Fight to understand how the letters and words work. People think it is strange that I am glad to be "labeled" learning disabled. But for me, it is not a label. It is simply a medical diagnosis that was the first step to winning that fight. It is not who I am, but it does help me understand what I do.
