Sounds funny for a writer, but it’s been impossible for me to find the right words to describe what it’s like to be dyslexic. Thankfully, there are many talented dyslexics who are finding creative ways to show how dyslexia impacts our lives.
Photographer Kate Harr has done that with her Dyslexia Portrait project. In 2017, she interviewed and collaborated with people with dyslexia from around the UK to create a photograph that reflected their personal experience of dyslexia.
I was proud and honoured to be part of the project (though I’m not from the UK, Kate kindly made an exception).
Kate asked participants to describe their experience with dyslexia. It was a great mental exercise, and here is some of what I wrote and sent to her:
“I am @dyslexiclibrary, diagnosed at age 49 after a lifetime of struggling and not knowing why. I am a full-time writer, and I read all day. This is a tough question, it’s hard to describe, but I will try. I often wonder: how do others read? Here’s how I read: 1. When I first look at a piece of text, I see it as a big blob of text and white spaces on a page, and sometimes it is moving (not like flipping text though, more like waves and sometimes the words look like ants running away from me). 2. When I read, I have to break down that big blog of text: I try and focus on each word using the spaces and punctuation as guides. The spaces also give me a break–but they can also be distracting if there are too many. Sometimes I just rest my eyes on the spaces. 🙂 3. I don’t read from left to right. I have to hover over the text and zoom in on each word like a helicopter — sometimes I start in the middle of the sentence and work my way back. 4. It’s not like I can’t decipher words, it’s that I don’t immediately recognize them, it’s like reading a foreign language every time. Or like a CAPTCHA test. 5. Reading is very tiring for me; I don’t do a lot for pleasure, because I work with words all day. While I do not love the act of reading, I love words and playing with words, and I love learning.”
She took my ramblings and created this wonderful portrait:
She captured my experience perfectly. How I feel when I read, and how I feel about reading. The anxiety, fear and fatigue. The need to “take a breather” and to “hide in the spaces between the words.”
In fact, Kate’s image expresses more than I ever could express with the written word. I didn’t even realize that I had an emotional, even physical, response to reading. But I do. I really do. I get goosebumps every time I look at this.
Kate has exhibited her work in England, and is helping to raise awareness about dyslexia through her art.
Her project is currently on hold, as she is working and studying for a post-graduate degree. She also gives workshops at schools in the UK. From her website: “Using her experience of dyslexia, and her experience working on the project, Kate will work with your school, college or organisation, to deliver workshops to students that allow them to build confidence in their own skills, and express their difficulties – and creativity – through art and photography.”
I urge you to check out the portraits she has created, and the stories they tell. She is a truly creative dyslexic!
The fear factor and dyslexia
Since realizing my own complicated emotions about reading, I’ve discovered that dyslexia commonly causes anxiety, fear and fatigue, which in turn affects both our ability to read and learn to read.
I found it illuminating to hear Clinical Neuropsychologist Jerome J. Schultz, Ph.D. describe reading (or a page of print) as a “fearful stimulus” for dyslexics.
He says that reading sets off our “flight or fight response” which makes us want to run and hide (as you see in my portrait). For example, reading may trigger all those times you had to read in class when you were a kid; the giggles from your classmates; the frustration and judgement of a teacher or parent when you were slow to learn or understand; your own feelings of failure at school or work. For me, it’s living in a culture that equates reading with intelligence: so if I’m not a great reader, does that make me stupid? (of course not, but the stigma is still there). And if reading is hard work and makes me feel stupid, I’d rather do anything else.
“If you want to stay alive, you need to get out of here, and get out of here fast,” explains Dr. Schultz.
I’ve seen this happen in myself and my daughter; the fear factor can shut you down and turn you off from reading or learning completely. And remember, there is nowhere to hide: we are still a text-based society. We need to read to function in society. So this fear and anxiety follows you (even unconsciously) wherever you go. I’m a writer by trade, and read large amounts of heavy text every day, so my struggle is very real.
The good news is: Dr. Schultz says that reading instruction, and reading fluency, can help override the “fear factor” that dyslexics feel when it comes to reading. Build those skills and confidence, and you’re more likely not to run and hide when you face a block of text.
I’m not sure if I’ll ever be free of the fear, fatigue and anxiety that come with dyslexia. My reading skills are good, but my fluency needs work. I think that recognizing my fear is a good first step. We’ll see where that takes me…
What’s your experience with dyslexia? What would your portrait look like?
Dyslexia-anxiety-stress connection (International Dyslexia Association)
Video: Dyslexia and the fear factor in the brain (Jerome J. Schultz, Ph.D., Clinical Neuropsychologist, Understood)
Video: Dyslexia and anxiety (Jerome J. Schultz, Ph.D., Clinical Neuropsychologist, Understood)
What does the dyslexic person feel? (University of Michigan)