Why has defining dyslexia been so controversial?

Listen to the fifth episode of the Quartz Obsession podcast season 3 on dyslexia.

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Kira Bindrim: As a lover of books, and a professional editor, both my job and my personal life revolve around reading and writing. I’m far from alone there: From homework to job applications to furniture assembly, reading is unavoidable when navigating the modern world.

But there’s one group of people for whom reading and writing doesn’t come easily. Since dyslexia was first identified in the 1870s, psychologists, teachers, politicians, and parents have questioned its definition, its causes, and even its very existence. As a result, dyslexia is known by enduring and sometimes contradictory myths, like that people who have it are all highly intelligent—or unintelligent and just not willing to admit it.

Fortunately, science is starting to save dyslexia from those stereotypes. We know now that there is a biological component to it, and that external circumstances make all the difference in how dyslexia impacts those it affects. That conclusion offers up important lessons, not just about dyslexia itself, but about the cost to society of letting any inequality fester.

This is the Quartz Obsession, a podcast that explores the fascinating backstories behind everyday ideas, and what they tell us about the global economy. I’m your host, Kira Bindrim. Today: dyslexia, an enigma in our minds.

I’m joined now by Katherine Bell, who is the editor in chief of Quartz. And so I’m very excited to be chatting with her today. I’m curious how you got interested in this topic, Katherine.

Katherine Bell: I became really interested in the brain after my younger daughter had two really bad strokes when she was two. At the time, she had some really bad brain damage. And the neurosurgeons and neurologists kept telling us that a two year old’s brain is incredibly plastic. And we really saw that in real time as her brain rewired itself and figured out how to do things in different spots in the brain. The biggest way that that has affected her life in an ongoing way—she’s almost nine now—is that she’s severely dyslexic. So I’ve learned a ton about dyslexia through that. And then, as a pretty big surprise, we recently found out that our other daughter is also quite dyslexic. And she is sort of the classic profile of a really smart kid who’s been compensating so well that she kind of tricked herself and her teachers and us all this time. So I have one kid who has dyslexia because of brain injury, and one kid who has developmental dyslexia. And now I really can’t stop thinking about how it works.

Kira Bindrim: I want to start by asking you about the history of dyslexia. When and how was it first identified?

What is the history of dyslexia?

Katherine Bell: It was first identified by ophthalmologists in Germany. They realized that they had patients who couldn’t read the eye charts, even though, as ophthalmologists, they realized there was nothing wrong with their eyes. So they realized it had to be something else, and it had to be neurological. It wasn’t until the 1890s, 1896, a physician in England named W. Pringle Morgan, which is such a great name, wrote a medical case study in a journal about a 14-year-old boy he calls Percy F, who was very, very smart, but had a huge amount of trouble learning to read. And the distinction between his abilities in math and other areas and his ability to read was so striking that he realized there was something going on.

Kira Bindrim: Before then, is it safe to assume that it was just being misdiagnosed? Like, is there something in that period in history that would expose the fact that people were struggling with this, force people to confront it in a different way?

Katherine Bell: Yes, I think dyslexia has been around as long as reading has been around. And one thing that’s really interesting is that, I think what was happening in the 19th century was that education was becoming much more widespread. And it wasn’t until there was really compulsory education for all young people, the disparities between people who could learn to read easily and those who couldn’t really became clear.

Kira Bindrim: Let’s talk about what’s changed in our understanding of dyslexia since that 1870 diagnosis up to today. Are their major breakthroughs or researchers whose work really shot forward our understanding of it?

Katherine Bell: So early on the one who I think has had the biggest impact and still is, is Samuel Orton, who was an American neurologist who was studying brain injury after the First World War. He did a lot of autopsies of brains and he realized that when there were injuries on the left side of the brain, those were often consistent with people who either had aphasia, or they had lost language in some way, or dyslexia. And so he theorized that what was going on was that the left side of the brain was having trouble controlling the right side of the brain. He realized that a lot of people with dyslexia were also either left-handed or ambidextrous.

So he really ended up studying dyslexia and being very well known for it. And he developed a lot of theories about how to teach children who have dyslexia, and they involved multi-sensory ways of teaching. So things like skywriting. My daughter does this where, for sight words, for words that you that you can’t sound out, the way they teach them is, with your hands, you write them in the air. And they also do things like tap the number of syllables on their arms. And so they’re using touch. And there’s a lot of visual support and oral support, where trying to teach reading through all these systems at once is really, really helpful. And part of the reason he’s doing that is he’s trying to use both sides of the brain in order to teach reading.

And he ended up working with a psychologist named Anna Gillingham. And the two of them together, created this system called the Orton-Gillingham system for teaching reading. And it’s still the most common one used today. So my daughter goes to a school where that’s the way they teach reading.

Kira Bindrim: It doesn’t sound like the worst way to learn reading for anyone.

Katherine Bell: Well, that’s really the answer. The way that we teach reading in schools in this country, at least in the US, really isn’t the best way of teaching reading in general, even to kids for whom reading comes easily. So a lot of kids, it’s sort of miraculous that they kind of learned on their own, and they they make it through, but we could teach reading differently to everyone. And that would solve a big part of the problem.

Kira Bindrim: It strikes me that we’ve talked about an ophthalmologist in Germany, we’ve talked about something in England—is dyslexia, does it exist in every language? Is it found all over the world?

Katherine Bell: It does, this is fascinating. For a long time, people thought it was only alphabetic languages like English or French, Spanish, but it actually occurs in all languages. And it does in syllabic languages like Japanese, and logographic languages like Chinese. But how that actually plays out does depend on the language you’re speaking. And what it depends on is how opaque or transparent the language is. And what that means is, how different is the way that a language sounds from the way it’s written? How complex is that relationship between sounds, and the written word, and how consistent is it? So in English, English is one of the hardest languages for this. It’s really difficult and inconsistent and confusing, because there are only 44 phonemes in English. And those are the smallest units of language, of sound. So they’re sort of like an atom in chemistry, or a nucleotide in DNA, in biology—they’re the smallest building blocks, and those are the part of language that people with dyslexia have trouble with. And then English, there are 44 of them, but more than 1,100 ways that you can write them.

Kira Bindrim: Why has dyslexia been so controversial? Why, from the 1870s has it been like, ‘Okay, now we understand this, and let’s work towards understanding it better?’ It seems like we’ve spent a lot of the intervening century continuing to not understand it.

Why is dyslexia so controversial?

Katherine Bell: Yes, it has been controversial since the very beginning. And I think that’s for a few reasons. One is that it’s an invisible disability. And anytime there’s an invisible disability, people fight over it. But the other thing is, there were a lot of connections between class and gender and those sorts of things that made things harder. So, because the school systems—and I’m mostly talking about the US and the UK. Because the school systems weren’t diagnosing dyslexia, weren’t handling it very well, weren’t giving children the support that they needed, it meant that it fell to parents and families to do that. And so it was really parents who had the means to do so—who had the financial means, the time, the education—who had the luxury of being able to fight for their kids, to pay for tutors. Those became the people who started organizations in the 60s and 70s, lobbying the government to take it seriously in the education system. I think this has happened in a lot of other situations, too, where a lot of those people were dismissed—a lot of them were mothers, and they were dismissed as worried middle-class moms who didn’t want to accept the fact that their kids were not as smart as they thought they should be. And then there were a lot of people in the government who didn’t want to take on the extra cost, who were really dismissive because they thought that people were using it as an excuse for poor parenting, poor teaching. So really, the kind of class associations and gender associations meant that it wasn’t taken seriously. More recently, there’s been some backlash against the dyslexia movement from people who point to the inequalities of the fact that it tends to be people who have more money, who get the diagnosis in the first place, who are very loud about getting their kids the support that they need. And so there are people who have argued for getting rid of the label entirely and just basically, you know, giving any kid with reading issues, the support that they need.

Kira Bindrim: After the break, moving through the world with dyslexia.

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Kira Bindrim: I want to come back to what is probably one of the fundamental questions people have, and one of the hardest to answer at the same time. When I imagine the experience of dyslexia, which I imagine for me is largely informed by how it’s portrayed in fiction, or in movies, or in TV, I am picturing letters transposing themselves, that sort of stereotype of what it is, that the letters have switched and I can’t see the word. Is that a reductive understanding of the experience of dyslexia? Are there better articulations of what it feels like? And I guess also the spectrum of what it feels like, because, I guess it’s not the same for everyone.

What does dyslexia feel like?

Katherine Bell: I think that is reductive. I think it’s the way a lot of us think about it. And from talking to friends of mine who have dyslexia who are adults, the experience varies quite a bit across the spectrum of severity, but also just between people’s experience qualitatively. One of the things that I’ve heard is that words look a little blurred together, sort of. Also words that sound similar to each other, you don’t see them as different, even though they they sound different. Some people do talk about the letters moving in the words. And it’s not just about reading—usually when we talk about dyslexia, we’re thinking about reading, but it’s very much about spelling as well. Spelling can be very, very difficult. And it’s also about speech. I mean, the actual problem is with being able to hear and isolate those smallest components of speech and connect them to written letters. And so that actually does affect your speech as well. So one thing that people talk about a lot is word retrieval—it can be really hard to remember a word. And, you know, I was talking to a friend recently about how she’s really scared about public speaking when she’s not prepared because of that exact thing where she has trouble thinking of the right word at the right moment.

The other thing is that, because when you’re dyslexic, you’re using different pathways in your brain to read or to spell or to remember words, those are less efficient than the ways most people do those activities. And they’re more tiring. So if you think about, for a lot of us who are lucky, reading becomes really automatic and you don’t even think about it and you read as fast as you can think. And for people who are dyslexic, they may, as they learn, be able to read accurately, but it’s a manual process and it never stops being a manual process. So it’s exhausting. It takes more attention. And that affects a lot of things, like attention.

Kira Bindrim: I’m sure this is also reductive. But it sounds to me, or reminds me of the experience of existing or living your life speaking your second language, where you’re everything has that extra step for you to translate it and get it out.

Katherine Bell: Exactly.

Kira Bindrim: So, I want to bring in sort of the recent history here, which is: what have we learned about dyslexia as we understand more about genetics and have things like brain imaging at our disposal?

Katherine Bell: So the genetic studies are still very early on. But what we have learned is that it is heavily hereditary. It’s not something that has a simple genetic makeup. And probably there are lots of different versions and different ways that our genes are affecting our ability to read and this system of decoding language. So there’s a lot to learn there. What has been really fascinating and has changed our understanding drastically in the last 20 years, is functional brain imaging technology. So PET scans and now functional MRIs have allowed researchers to look both at kids who don’t have issues with reading and watch what’s happening in their brains while they’re reading or spelling or speaking, and then compare it to kids with dyslexia or adults with dyslexia. And they’ve really seen a signature brain pattern that’s quite different. So there are parts of our brains that usually light up on brain imaging when we’re reading that don’t light up for people with dyslexia. And you really see other pathways being relied on. One thing that is a very new discovery that I thought was really interesting was that it’s not just about the specific locations in the brain that aren’t working as well or working differently, it’s also about how much different parts of the brain that are involved in the reading process are communicating with each other. And reading automatically requires a lot of communication between different parts of the brain. And when you watch somebody who’s dyslexic reading, their different parts of the brain are not communicating with each other as efficiently.

Kira Bindrim: We’ve been talking about the sort of contradictory myths around dyslexia. And we’ve talked a little bit about one of them, that it is this excuse for parents who are not prepared to admit that their kids are not as smart. And I think you’ve sort of debunked that successfully. I want to talk quickly about the other side of that, that it’s that dyslexia has also been characterized as a sign of extremely high intelligence. I find that kind of fascinating that it would have a reputation for both at the same time. Where does that idea come from, that that dyslexia is a sign of super high intelligence?

Katherine Bell: So I think what’s happening there is that, if you are an intelligent person, and you have dyslexia, and you have the right supports—you’ve had the right education, you have the means and the support that you need—then your brain and other things about you compensate for what’s difficult in ways that are really valuable to you, and to other people and to society and that make you smarter in really specific ways than you might otherwise be. So some examples of the kinds of strengths that people develop in order to compensate for the difficulties they have in reading and spelling are: being really good at communicating orally; being really good at seeing the big picture, so not getting too bogged down in the details; problem solving; leadership. So one area where we see a lot of people who are dyslexic succeeding wildly is in entrepreneurship. So one recent study showed that in the US, 35% of entrepreneurs are dyslexic (pdf), which is quite amazing. So, estimates of how many people in the general population are dyslexic range from 10% to 20%—it’s probably a bit closer to the higher end of that. It’s really a lot of entrepreneurs. And there are some really interesting theories about why. And they have to do with the strengths that people develop when they compensate for the fact that they’re not reading. One of them, which I thought was really interesting as somebody who’s been very interested in management for a long time, is that they’re really good at delegating, and that that makes them more successful as business leaders. So they’re less likely to be micromanaging the details and more likely to step back and see the bigger picture, see things that other people aren’t seeing. They’re really good at being convincing when they’re speaking. They’re really good at simplifying things in a way that is motivating to other people and that sells things. So the skills that they tend to develop make them really good entrepreneurs. In contrast, the same study found that only 1% of corporate managers are dyslexic. So big corporations, and all the memos and emails, are not great places to be dyslexic.

Kira Bindrim: Who are some people who have been open about their dyslexia that we might know of, or have heard of?

Famous people with dyslexia

Katherine Bell: There’s so many famous people with dyslexia. And a lot of them tend to be in either entrepreneurial fields, like Richard Branson; John Chambers, who started Cisco. And then a lot of creative fields, so Steven Spielberg; Jamie Oliver, the British chef; a lot of actors. Those are kind of the two areas that you hear about the most.

Kira Bindrim: So I want to put these two things together. What I’m hearing is, we have learned that there is a big hereditary and biological component, and also that external circumstances—who you are, your privilege in the world, your access to money—has influence on your diagnosis of dyslexia all the way through your experience, and even treatment of it. So if you are white, socioeconomically well-off, your struggle with reading and writing might be both perceived and treated differently than if you are poor, or poor and also part of a marginalized community.

Katherine Bell: That’s absolutely right. If you have the support that you need, and if you get the education that you need, it can turn into a strength and turn you into a successful entrepreneur. On the other side, if you don’t—if you’re not diagnosed, if you don’t get the education you need—it means that you are really disengaged in school, you often don’t make it through school. And then people who are dyslexic are really disproportionately represented not just as entrepreneurs, but also in the homeless population, in prisons. About 50% of people who are unhoused, and about 50% of people in prison—this is true in the US and in the UK—have dyslexia, which, I was really stunned to learn that.

Kira Bindrim: Yeah, I am as well. And putting the two numbers together—50% of prisoners and 35% of entrepreneurs—really kind of tells the story on its own.

Katherine Bell: Yeah, exactly.

Kira Bindrim: If someone’s experience of dyslexia is a combination, then, of their biology and their circumstances, I want to find some hope in that, because theoretically you can tackle the circumstances. But I think it would be fair to say that many countries, including ours in the US, do not have a strong track record of addressing systemic issues or socioeconomic issues. What do we know, or what do we understand at this point about the economic impact of dyslexia?

What are the costs associated with dyslexia?

Katherine Bell: It’s huge, both at a state level and at an individual or family level. There was a study recently done by EY and the University of California in San Francisco, on the state of California. And they found that in 2020, it cost the state $12 billion (pdf). They expect it to cost $1 trillion dollars in the next 60 years. That’s a lot of money, and that’s covered in prison costs; in special education costs that could have been avoided with early intervention; in litigation costs because a lot of schools are not giving students what they legally are entitled to in terms of special education and so that has results sometimes in litigation; unemployment costs; and then there’s the loss in GDP, which can be really huge. And what they also looked at was the investment that would be necessary in order to change that. And what’s so frustrating is that it’s a really good investment. We know what to do, it’s not that hard to figure out what to do to improve the situation. You just need to screen kids earlier, or at all. You need to intervene early with these really tried-and-tested systems for teaching reading. And you need to put reading specialists in every public school—it’s not that hard. And what they found in that study was that the return on investment would be between 800% and 2,000%. And then there’s also the cost to families. So in the US, the same study found that the average a family spends on a kid with dyslexia is $15,000 a year extra. And because we know it’s hereditary, a lot of families have more than one kid. So it’s a lot of money.

Kira Bindrim: It makes me want to zoom out a bit because dyslexia—what we’re what we’re talking about is dyslexia as a complex and nuanced disorder that has a lot of influence on socioeconomics and class and race, and all these other things that come in. And it strikes me that it is also then one of many complex and nuanced disorders that have all of those same struggles. What do you think are the bigger lessons here that we’re learning from dyslexia?

Katherine Bell: I mean, I guess one is that, in a situation where you have an enormously complex and often emotionally-devastating situation that affects so many people but a really simple fix for it, you should really just be implementing that and not worrying too much about whether everybody deserves it or why it’s happening. It would not be that hard to fix this problem, and I think there are other things like that. There’s a real continuum of how severe it can be and what it looks like, and I think people get really hung up on debating where the edges of it are, and who has it and who doesn’t, when really, we should just be helping people.

The other thing I think is interesting is the idea that something has been seen as a weakness in a particular economy or time in history, that that can become a strength. So in thinking about the future economy, I think that’s really interesting, because some of the things that are hard for people with dyslexia are becoming less important over time. So as work becomes more automated, computers and AI are taking over some of the things that people used to have to do that are hard for people with dyslexia— reading and writing and remembering facts, those sorts of things. But the creativity, the problem solving, leadership—those sorts of things are becoming more and more valuable to companies.

Kira Bindrim: So if we look at everything we’ve talked about up to this point, if we look at the trajectory of our understanding of dyslexia from the 1800s up through today, and now we cast it forward 50 years or 100 years, where do you see dyslexia at that point, in terms of our understanding of it, or treatment of it, or anything like that?

How to support people with dyslexia

Katherine Bell: I guess, in part that depends on where we are with genetic treatments for things in general. So if we do figure out some of the genetic controls of our language systems, those might be things that, in 100 years, we’re fixing lots of those. I think that there’s a danger in that because neurodiversity is really valuable, to have people thinking in different ways. And, as we’ve talked about, there are a lot of ways in which people who have dyslexia are thinking differently in ways that are important for society. I do hope that we will have learned some things about education and about what’s important with education, and that when we have evidence that a different way of teaching works, that we will pay for it.

Kira Bindrim: I have one more question for you. And it’s just that I want to know the most interesting thing you learned in the course of, not just researching, but this experiencing it. Having become an expert on dyslexia, what is a factoid that you just cannot get out of your head?

Katherine Bell: One thing I love is about the founder of IKEA. So he is another successful entrepreneur who is dyslexic. He really struggled, in the early days, all of the products in at IKEA were labeled with numbers, they all had just numerical codes. And in his version of dyslexia, he really struggled with remembering strings of numbers. So he renamed all of the products and had them renamed with systems of words that he could visualize and remember more easily. So they became names of Swedish towns, or names of Swedish islands, or common men’s names in Sweden for different suites of products. So I love that, that there’s a reason why every IKEA product has a specific name attached to it.

Kira Bindrim: Yeah. Thank you, Katherine. This was fascinating. I feel like I learned a lot.

Katherine Bell: Thank you so much.

Kira Bindrim: That’s our Obsession for the week. This episode was produced by Katie Jane Fernelius. Our sound engineer is George Drake and our executive producer is Alex Ossola. The theme music is by Taka Yasuzawa and Alex Suguira. Special thanks to Katherine Bell in New York.

If you liked what you heard, please leave a review on Apple Podcasts or wherever you’re listening. Tell your friends about us! Send them a voice memo about your new favorite podcast. Then head to qz.com/obsession to sign up for Quartz’s Weekly Obsession email and browse hundreds of interesting backstories.