Dyslexia, memory, and the limitations of diagnosing ‘learning disabilities’

dyslexia-imageWhat happens when we can’t trust our own brains? When we doubt our own memories and our bodies—even if only briefly and temporarily—and our ability to trust our bodily experience of the world is called into question?

Well this week it meant that I very nearly screwed up to the tune of roughly $10,000. I chair the review committee for a grant program, and in our final meeting a few days ago I was responsible for keeping everyone on track as we worked our way through this year’s applicants. The reviewers were deciding who would and wouldn’t get funded, a process that frequently provoked long and heated debate. As the non-voting chair, I was simultaneously managing the conversation and keeping records.

At the point when the debate seemed to be reaching a consensus I would call a vote, count the number of hands raised in favor or against, then make a note of the result on the list in front of me. Next to each name I wrote down a brief yes or no, while also repeating the decision out loud and shifting the discussion onto the next applicant. So multitasking in a fairly pressured situation, but not that daunting, all told.

Or that’s what I thought I was doing.

When I came to process the list of successful and unsuccessful grant applicants the next day, I began to get the sneaking suspicion something was wrong with the list of yeses and noes in front of me. I was sure that the person I was about to send a ‘happy email’ had actually not been funded. But there next to his name was the word yes in my own handwriting. I re-read the longer notes I’d taken. I surreptitiously checked with someone else who had been at the same meeting. And yup: in a handful of cases I had written the word yes next to a proposal that should have been a no. Once I’d discovered a couple of confirmed discrepancies, my whole list came into doubt.

In the end, we figured out how to reconstruct the correct list. But aside from the embarrassment of having to admit I badly messed up to my colleagues, no major damage.

However, it’s brought up more deeply rooted anxieties that I’m still puzzling over a couple of days later. The thing is: I can remember – or I think I can remember – that we decided something was a “no”, but the evidence of that decision in the form of a written record said the exact opposite. Moreover, at the exact same moment my hand had been writing the word yes on a page, the words “Ok so we all agree that’s a no” had been coming out my mouth. I wasn’t being secretly generous to our unsuspecting grant applicants. I genuinely had no idea I’d been thinking and saying one thing while my hand was writing something else.

This has rattled me. I am left with the sense that I can’t trust my own hands to form the words on a page that I want written. Or my mouth to voice the words that I want to say. I have been going over and over my memories of this fairly mundane meeting for the last few days, trying to figure out which are reliable and which my imagination. And not for the first time, I’m trying to figure out whether this falls under the mantle of dyslexia or not; what that might mean (or not) to me and to people like, say, my pissed off boss and colleagues; and ultimately how my experiences of my memory and language skills over the years, as someone who is literate enough to write for a living but keeps having these kind of word confusion problems, doesn’t seem to fit neatly so-called ‘learning disabilities.’

Ultimately the problem is: if I can write and read well enough to get a PhD, does frequently making language mistakes like writing the wrong word down make me just careless because I can’t possibly be dyslexic? Beyond my own personal puzzlement, what does this say about how society more broadly understands conditions like dyslexia? What other ways could we think about such conditions, if we think about them instead as the key to exploring different embodied experiences of the world?

***

When chatting with a learning science researcher recently, I wasn’t surprised to discover dyslexia is increasingly considered to be an inherited condition. One of my parents, several of my siblings, and probably now some of my nieces/nephews are dyslexic. What’s been fascinating, however, as we have all grown up, is seeing how much variety there is in how it manifests itself in our large family. One sibling reads slowly and can’t spell, but was fine with maths and is now a highly successful accountant. Another has enormous difficulty with both math and reading or writing in English, but was fluent in several foreign languages before reaching age 20.

As for myself, I’ve always felt enormously conflicted about considering myself as dyslexic. I quite obviously have no problems reading and writing in English, and never had. I’m an academic—reading and writing a lot, very fast, and to a high level of complexity is both my job and my favorite pastime.

But at the same time I have a lot of other ‘quirks’, so to speak, that are strongly associated with dyslexia. Like hearing one word and writing another. Stammering or transposing words in a sentence when I’m flustered or not concentrating. Having a great long-term or experiential memory but being completely unable to remember lists of facts that are not grounded in concrete bodily experiences at all. This last one including lists of directions, lists of facts, or even things like the order of months in the year.

So I have no trouble with writing or reading, words don’t jump out a page at me, and my mental arithmetic is fine. But while I can tell you the exact details of a conversation I had with you two years ago and what we were both wearing at the time and what I saw in the windows of the shops we passed by: I still can’t always remember my own phone number.

By this point in my life I don’t even think of these things as problems because I know how to navigate the world in ways that make them irrelevant. Being unable to spell stopped being an issue once spellcheck was widely available. I never go anywhere without a map, or I rely on someone else to do the directions. My phone number is taped to the back of the phone. These kinds of ‘problems’ are so easily solvable, it doesn’t seem worth investigating whether or not this ‘really’ counts as dyslexia. But there is still sometimes the occasional problem, like this one this week, which isn’t controllable and as a result feels horribly disconcerting.

For instance, sometimes I suspect I have just spoken a sentence where the words were in the wrong order, but the person I’m talking to hasn’t told me because they are too polite. I start to doubt myself, trying to remember what I just said. Paranoia descends…

Then a while ago, at a party, J and I were chatting with a friend who was complaining that the drugs she was on gave her something she referred to as aphasia: i.e., she would struggle to remember and say a common word. “Huh.” I was thinking, as she described how awful this side effect was and how stupid it made her feel. “So I guess this means that forgetting how to say words isn’t a totally normal thing everyone experiences.”

 ***

I’d like to find out more about what all this means, but here is where I run into the limitations of dyslexia being primarily understood and studied as a ‘learning disability’. Information I’ve found about dyslexia is nearly always geared towards infants and school aged kids, with the expectation that it is their parents or teachers who are trying to figure out a diagnosis that will give them tools to help the child do better in school.

The implication is that there is no reason to understand dyslexia beyond helping kids pass exams at school. Obviously I think this is a very limited way of thinking about what dyslexia might mean, as both a diagnosis and a way of experiencing being in the world.

Certainly this framing affected my own understanding of it, while a child. At school I considered going through the process of getting a diagnosis at various points. But never seriously, because the point of diagnosis was to get official permission for extra time on exams. Students with a documented dyslexia diagnosis got an extra 15 minutes in public exams like GCSEs and A levels. I was doing very well academically and had a particular knack for exam taking, so I thought it would be unfair to request additional time. I was certainly curious about my abilities and disabilities, and even then would have liked some official answers to why I had such weird issues. But mere curiosity about myself, coupled with the sense that a diagnosis would be cheating if I was already doing well academically, didn’t seem like enough of a reason for requesting an appointment with the specialist.

Searching for more information as an adult, and knowing diagnosed dyslexics who do have problems with reading and writing, I still feel unsure about whether my memory and spoken-language problems fit the bill or not. For instance, reading this article on the neurobiology of dyslexia is fascinating but also alienating. Of the three “key constructs in reading and potential defects in dyslexia” listed in table 1, the first (phonological awareness) and third (reading fluency) are non-issues for me. But the second—‘Rapid automatized naming’, where you are tested on how quickly you can name words or images out loud when you see them… oh my. Just thinking about a test like that makes me panic. But I also feel a like an usurper for trying to claim kinship with people who have far more immediate and far-reaching problems with English language comprehension than I’ve ever experienced.

 ***

As far as I can tell, there appears to be some fuzzy disagreement about whether dyslexia is primarily a literacy problem, or involves a range of information processing problems that include but are not limited to language. The chicken-and-egg question, therefore, is whether framing it primarily as a writing and reading issue stems from the focus on children who are not doing well at school, or vica versa, because perhaps people who are fine at reading but still have other information processing difficulties are not being diagnosed as dyslexic.

For instance, I can’t help but wonder whether a child who had my memory problems but went to a different school at a different time would have been diagnosed as ADHD, on the reasoning that, if they weren’t having trouble with literacy, they must instead have a problem of concentration.

As it was, I was often accused of being lazy because my academic problems were confined to such narrow, specific places: learning lists of information by rote. At primary school I would study hard for weekly spelling and times-tables tests, but fail them over and over again. Because I was otherwise a good student, my teacher would berate me for not doing my homework. I really enjoyed chemistry at GCSE and got an A, but when I started the A level it required memorizing a book full of formulas. After I got an E in my AS exams, I dropped chemistry. When I started learning foreign languages I would memorize verb conjugations for hours, but ten years of Spanish classes later I still can’t talk fluently in the past tense. Many, many language instructors over the years have accused me of being lazy.

I can imagine how all those teachers could also have seen this as a concentration problem and suggested drugs. But I can concentrate fine, and at school I would frequently study for hours without difficulty: the problem was that the lists of information would be gone from my head the next day.

 ***

Trying to figure out my own experiences—why, for instance, I will never be able to spell the word bureaucracy; why I said “that’s a beautiful sunset” to J this morning; why I wrote a list of yeses while thinking I was writing noes; and why I still can’t even conjugate the verb hacer properly after ten goddamn years of learning Spanishhave led me to want to know more about the neurological and experiential links between memory and language, how we think we control our senses and bodies as we move through and interacting with the world, and how perhaps we don’t have nearly as much control over ourselves and our minds as we assume at all.

Moreover, I’m curious about how much variation there is, in all these things. It’s hard to figure out if how each of us sees the world is weird or not! It comes through moments like the one I had at the party: gradually discovering that other people don’t share common embodied experiences. As such, I’m fascinated by instances of (what seem to me to be) extreme variations of this, particularly among people who only realized they experienced the world differently as an adult. For instance, the woman with synesthesia for whom letters and words have a distinct color and shape. Or the people with aphantasia who can’t visualize things in their mind. Such stories bring back the old worry (the heart of so much philosophy classic sci-fi, from John Locke to the Matrix movies) that we can never truly know if what we see in the world is the exact same thing that other people in the world see.

But I feel like I’ll always be frustrated by the expectation that dyslexia is nothing more than a ‘learning disability’—something that stops kids being able to pass tests—rather than how I’d like to frame it: as an opportunity to explore the weirdness, variety, and unpredictability of the human brain.

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