I’ll tell you a not-exactly-secret secret: I’m dyslexic. I’ve been dyslexic all my life: my neurons do not, as it were, fire quite like yours. (Or maybe you are dyslexic, too, and then our neurons have something in common.) When I was younger I never thought I’d publicly admit to being dyslexic—and then, my last year in grad school, I actually presented on it. I will tell you an actual secret now: I was so afraid I was shaking when I did so; I thought I would collapse midway through, thought I’d do more than uptalk and say “um.” I’ll always wonder if I damaged my chances in the extraordinarily competitive world of libraries by acknowledging what I am—and yet I am glad I did.
Here’s a truth: dyslexia is part of my identity, like having dark hair or freckles or a taste for Wisconsin cheese or heavily muscled football player’s legs. It’s not always a source of happiness—I mean, it rarely is—but then, I’m not always thrilled about my legs, either, even if they do mean I can walk or ski for miles. As a kid I memorized a lot—you would, perhaps, not believe quite how much—and I teamed up with friends, and I made it. Not always easily, not always prettily—a teacher once told my mother, in front of me, that I was developmentally delayed (definitely not the word she used)—but I made it. And then I learned to read on Shakespeare, and took off running. But don’t think I wasn’t compensating, because I was. We all learn to do it. But—and this is important—dyslexia isn’t something to be changed, or taken away, or reversed. I am not broken, and therefore cannot be fixed.
Recently, in a task related to my job, I happened to be scanning the card catalog for books pertaining to dyslexia, hoping to find fiction in which the dyslexic was treated as a normal person and not as, say, a magical (learning) disabled entity, which drives me nuts. So imagine my frustration when I stumbled across a book promising to “reverse” dyslexia. (I refuse to link to the book; it’s called Reversing Dyslexia: Improving Learning and Behavior Without Drugs.) We dyslexics already struggle with our self-esteem and are prone to anxiety1; the last thing we need is to hear that we suck, and are broken, and somehow “fixable”—maybe, if we spend the money/follow the plan/drink the snake oil.
Into the Woods. Gif from Giphy.
As a child, struggling to read and to do what was expected of me, I didn’t need to hear that another person thought I was broken. I needed to see myself reflected back at me—another reason why #WeNeedDiverseBooks, folks—and I needed people to believe in me, even when that was hard. I needed to know some of the things I’ve since learned, from researching dyslexia. As an adult, I’ve found out that lots of other dyslexics have trouble separating the conversational wheat from the chaff in a crowded room,2 and that many of us struggle with self-esteem, concealment, and anxiety.3 Hell, we apparently don’t even hear words right all the time, which makes it hard to connect letters with sounds and influences our common (in)ability to syllabify.4
And so, because in library school I was angry and alienated to find little or no mention of other people like me, I started researching, as it were, myself. You are not alone, the research whispers to me. I don’t always understand what the hell it’s saying to me—I often stick, particularly with the neurology texts, to introductions, conclusions, and discussions, which are sometimes understandable to a layperson with a good background in science—but I know that I’m not wrong, or broken; it’s just the way my brain happens to be made. It drives home the incredible preciousness of my ability to read: each word is like a treasure pulled from the dark, and, when I began to lose my reading comprehension at the end of my first Master’s, as I forced myself through sometimes as much as a thousand pages in a day, I was about as afraid as I have ever been. Words are, you see, rather my life’s work; I was reminded, forcefully, that sometimes, I need to make accommodations for myself.
I am often rather bad at accommodating myself, though I am fairly good at offering discreet accommodation to others. I am super-duper good at compensating, though! I definitely got skills! (I’m not sure this is something of which to be proud, but it has become part of who I am.) It’s probably part of why I listen quite as hard as I do, why I watch as carefully as I always have. Maybe it has something to do with my tendency towards careful sourcing and research—after all, when words have been a struggle (and when one sometimes mixes them up even in one’s speech), one must take extra care with one’s choices. And, as an inveterate reader ever since Much Ado About Nothing dragged me into literacy, I have sought out others like myself—rarely, alas, with any kind of success.
The first time I ran into a recognizable dyslexic in my reading, it was in Connie Brockway‘s As You Desire, a historic romance novel set in Egypt. The six-pack-abbed, profiteering/archaeologist/white-steed-ridin’ hunk of manhood hero was, quite recognizably (at least for me), a dyslexic. Brockway identified him as such in her author’s note at the end, acknowledging that his ability to read hieroglyphics might have been wild but she was stickin’ with it. (I don’t know: we all have our things, so why not have a dyslexic who could read hieroglyphs?) I have, quite literally, zilch in common with Harry Braxton, our man on the white horse, but for a common neurological difference.
It was an amazing moment, to find someone else, out there, in print–someone who (aside from his romantic perfections) wasn’t actually a magical disabled person, at all. He was just a dude with elastic morals on a white horse. The next guy I found was, once again, in a romance novel—this time the hero of Tessa Dare‘s second Castles Ever After book, Say Yes to the Marquess. Spoiler alert: Cleo totally doesn’t say yes to the marquess; she marries his dyslexic prizefighting brother, instead. (In case you’re wondering: the prizefighting seemed totally reasonable to me; we all compensate in our own ways, and I know my father was famed—not in a particularly good way—for hitting first, and hitting hard—and he was nowhere near as large as the fictional Rafe Brandon.)
I think my favorite fictional dyslexic, as of now, is Wylan Van Eck, one of the ensemble cast of Leigh Bardugo‘s amazing Six of Crows duology. The thing is, while Wylan doesn’t usually seem to have problems understanding people in crowded situations–although I should probably re-read it; he actually might—I know him, so very, very well. Unlike me Wylan’s family is wildly unsupportive—his father, upstanding soul that he is, wants Wylan dead—and it takes the morally elastic Kaz Brekker to recognize Wylan’s genius. (Brekker himself has a disability, one which, from what I have gathered, rather mirrors Bardugo’s own—although that hasn’t stopped some folks from saying that she “doesn’t know what she’s talking about,” which is, I guess, a good time to point out that disabilities, like everything else, are individual.) Wylan is, you see, really, really smart. He’s also deeply ashamed of his inability to read, and his self-esteem is definitely messed up. He compensates, and hides, and tries not to get backed into situations wherein he can’t help but reveal his difference. And, boy, do I get that. I can read—and read well—but I, too, try to hide, whenever possible. It’s so much easier, so much less frightening.
Flagrantly untrue, but a nice sentiment nonetheless.
Evil Willow, up there, has monumental self-confidence. I don’t. I do, however, have a bunch of degrees, and various academic honors. I’m a damn good researcher, even if sometimes it takes me a little to figure out spelling. (I have lots of tricks for that, no worries.) It’s still upsetting to see things assuring me that I’m broken but can be “fixed”—and, in truth, I don’t even want to think about what it’s like for a kid who’s already struggling with being different. I’d so love to see us reach a day where being different isn’t seen as wrong, or bad, or a problem to be fixed. For now, I’ll keep on trying to do my part to get there. We can only ever go forward—and, for me, that’s probably a really good thing.
1 This is cited in multiple studies, including the following:
- Alexander-Passe, N. (2006). How dyslexic teenagers cope: An investigation of self-esteem, coping, and depression. Dyslexia, 12(4), 256-275. DOI: 10.1002/dys.18
- Habib, L., Berget, G., Sandnes, F.E., Sanderson, N., Kahn, P., Fagernes, S., & Olcay, A. (2012). Dyslexic students in higher education and virtual learning environments: An exploratory study. Journal of Computer Assisted Learning, 28, 574-584. DOI:10.1111/j.1365-2729.2012.00486.x
- Heiman, T. (2008). Females with learning disabilities taking on-line courses: Perceptions of the learning environment, coping and well-being. Journal of Postsecondary Education and Disability, 21(1), 4-14. Available open-access from ERIC.
- Ingesson, S.G. (2007). Growing up with dyslexia: Interviews with teenagers and young adults. School Psychology International, 28(5), 574-591. DOI: 10.1177/0143034307085659
- Nalavany, B.A., Carawan, L.W., & Sauber, S. (2015). Adults with dyslexia, an invisible disability: The mediational role of concealment on perceived family support and self-esteem. British Journal of Social Work, 45, 568-586. DOI: 10.1093/bjsw/bct152
Sometimes, I wonder if this is behind some of my own occasionally debilitating anxiety.
2 Chandrasaekaran, B., Hornickel, J., Skoe, E., Nicol, T., & Kraus, N. (2009). Content-dependent encoding in the human auditory brainstem relates to hearing speech in noise: Implications for developmental dyslexia. Neuron, 64(3), 311-319. Retrieved from http://dx.doi.org/10.1016/j.neuron.2009.10.006
3 See note1 for this.
4 Blau, V., Reithler, J., van Atteveldt, N., Seitz, J., Gerretsen, P., Goebel, R., & Blomert, L. (2010). Deviant processing of letters and speech sounds as proximate cause of reading failure: a functional magnetic resonance imaging study of dyslexic children. Brain: A Journal of Neurology, 133, 868-879. DOI: 10.1093/brain/awp308.
“Accessible Options: Putting Learning Disabilities into Library School” (aka my presentation)
“Accessible Options” slides
“The Geek’s Guide to Disability” from The Bias.
A Pinterest board where I occasionally pin research about dyslexia.