Why Is There Still So Much Dyslexia Denialism And Ignorance? Ft. Literacy Advocate Cheri Rae

Because if you recognize that it exists, you have to then address it. So let's pretend it doesn't, let's not talk about it, and let's put every parent through a struggle.

Switching just a little bit to, I guess, culture, society, institutions, back to that a little bit, you know, something that we already experience and already know about, but, you know, struck me also when I was reading your book, because you really talk about all aspects, including some of the, you know, cultural exchanges that have happened and institutional stuckness and all kinds of things. There's a lot of pieces to it, it feels like.

So, and one thing that surprised me maybe the most is the denial aspect, where it seems like there's still a lot of denial that there even exists such a thing as this brain difference called dyslexia. And I was wondering if you could speak a little more, like, about that. I, in particular, was dismayed because I'm a writer also, and a creative writer, and I was, I didn't know about the whole historical thing between the International Literacy Association and what they, association and what they'd said.

And so, I just didn't even realize all that was going on. Like, I knew, I knew about some of the other stuff I'm going to talk to you, we're going to talk to you about, you know, with, with actually doing the, as you start to get to the practical, you know, support. But I did not realize there's actual denialism still around. Yeah, that gets to be pretty depressing. But, you know, I went to Dr. Marianne Wolfe, who has, at UCLA, she has the Center for Dyslexia, Creativity, and Social Justice.

And I asked her that question about, what about people who deny dyslexia? And she told me, look at the fMRIs. Since we can look at how the brain works, you cannot deny it. So, I think that's kind of going to the source and recognizing it's real, you want to deny it, go ahead, but we're not going to talk to you anymore. You know, it's like, I just, I don't even have a way to deal with that kind of behavior.

And there are plenty of educated people who make a living saying, well, they're all, you know, it's just a different way of learning. No, it's not even that. It's that it doesn't exist. And, I mean, yeah. And I think I say something in the book, you know, it's like denying that gravity exists. It's like, let's not even spend our time dealing with that. Just move on. And that's the only way I know how to address it.

It's obvious that it is. And when you can see it in real time on an MRI, there you go. Yeah, I think that's a great thing. Yeah, that's a great response, I think, to have because we do have the MRIs. Yeah, so I think the problem is it doesn't sort of stop at the denialism. So even if people aren't explicitly denying it, it still seems to be such a struggle to get kids identified to start with.

And so, you know, in our experience, our daughter was having trouble in school starting in kindergarten.

And we, you know, so much to the extent that we pulled her out of school at the end of first grade and homeschooled her for a year. And yet we didn't really consider, I mean, we sort of even talked about dyslexia as a possibility, but we didn't really, like, it wasn't the kind of thing where we said, okay, we need to get her, like, diagnosed with dyslexia. And so we didn't end up getting her diagnosed.

And nobody at the school suggested it, of course, right? And we ended up getting her diagnosed, was it in fourth grade? Yeah. Yeah. It was quite a bit later. It was quite a bit later that we, we finally got her diagnosed. And, and I guess, so I guess my question is sort of, and I think that our experience is not unique by any means. It seems to be fairly common. So I guess, you know, why is it still such a struggle to, to get these kids identified and diagnosed?

You know, there are a number of factors at that. One is that the education community is not knowledgeable about dyslexia. They don't teach about it really in, when teachers go to teacher school, they just don't. So they don't ever learn it. And I can't tell you how many teachers have literally cried on my shoulder saying, I don't, I don't know about this. I can't teach this child, but I got to keep my job.

So what do I do? You know, so there's a, there's a lot going on there. There's a lot of politics involved. I mean, here in California, the California Teachers Association absolutely is opposed to identifying children who have dyslexia. They don't want to screen. They've, they've been in denial about that for a long time, because if you recognize that it exists, you have to then address it. So let's pretend it doesn't. Let's not talk about it.

And let's put every parent through a struggle. And then there's another whole thing where they like to say, well, it's, it's a diagnosis. It's a medical diagnosis. So the school will send the kid, the family to the pediatrician and then the pediatrician goes, I don't know about dyslexia. I don't know what I'm going to do. And so then they send them back and it's just, it's time consuming and it works to delay and deny and to keep services from the child who's growing up as all of this time passes.

I've learned a lot about all of this stuff. And it's like, you know, economics is, is a big driver as well. So, you know, it's like, where are you going to put your resources? And apparently dealing with literacy these days, which is abysmal, not just in the dyslexia community, but larger community when you've got 50% literacy rates going on in this whole country, something's really wrong. And our priorities are wrong. And so it's a multifaceted question, but a lot of it comes down to just absolutely lack of knowledge.

And you asked me earlier about dealing with the, you know, the education establishment, when parents become very well educated about dyslexia, much more so than a superintendent, there's a lot of discomfort there. They don't want to hear, like my son said, they don't want to hear what you have to say because they're, you know, they're supposed to know that. So if I know it and they don't, then let's deny it. And I think that's where a lot of the problem comes in, where the animosity, because like every parent walks into kindergarten with their happy little child fingering it's going to be good.

And, you know, you bring the donuts and you, you, you, you're the class mom. And by fourth grade, they hate you. You know, you're bringing a lawyer to the classroom. So it's a, it's a, it happens so frequently from nice, nice people that feel betrayed by what happens in the educational institutions. And it shouldn't be that way. And we should acknowledge that it actually is. I think it speaks to how powerful cultural, cultural culture and institutions and that can be.

Because, I mean, I think it's hard to imagine when we imagine an individual teacher who, you know, presumably almost everyone is in it for the right reasons and thinks wants the best for the children. You know, it's, it's hard to see that that could, that then there can be these influences that really do affect the actual way that, that your child can learn from a teacher. Oh, right. I remember the day that my son was granted entry into special ed and my husband was a little bit, you know, skeptical.

And I, we left that meeting and I'm like, this is so great. These are the most dedicated people. They are, they are the most knowledgeable. They're really going to help him. And I believe that 100%. And they, they are, I'm sure they're very dedicated, but they're not knowledgeable. And in a lot of cases, what I've finally figured out is a lot of people who go into special ed are, are more motivated to work with developmental delays and children who have, you know, who are moderate to severe.

Right. But these kids who simply can't read, who they're like, what do I do with this kid? And so I don't really believe in, in putting kids with dyslexia in special ed. I don't think that's where they should be. I think they need just to be taught differently, but not there. It's not like, I don't think we're matching up very well there. So, you know, all these parents are like, oh, I got an IEP.

It's like, oh God, now you're in this land that you won't even believe where you're going. You know, it's legal land, not education land. Right. Yeah. I mean, we've found with our daughter, who's a sophomore in high school now, that we took the 504 land route. Oh, smart. That was smart. And that's, I mean, it's still a struggle. It's a struggle every day with teachers who don't, you know, want to necessarily give her the accommodations or like, you know, suggest maybe, maybe just try writing this essay by hand, you know.

But it's, I think, I do think she's much better off being in the regular classrooms with the accommodations. Yeah. I think so, too. I still remember when my son was in a classroom where the teacher gave him an F minus because she wouldn't give him these accommodations because he's so smart. He doesn't need them. He doesn't need them. Right. An F minus? I mean, seriously? Yeah. Yeah. I know that's one of the actually interesting things about sort of a tangent, but I think dyslexic kids often present verbally and stuff as being quite intelligent because they often are, right?

And it's that disconnect between the sort of raw intelligence and maybe verbal ability and then their ability to express themselves in written form. And that's just really hard, I think, for people to grasp sometimes. You know, when I, when I'm the dyslexia lady in classrooms, I bring this plate that my son made for me when he was in third grade. And it's, it's a cute little drawing and it has these words on it that you can't really read.

I mean, I can read them because I figured it out, but I use it and I show it to kids in class and I show them and they, I said, does this look like a smart kid? And they're like, no. And then I say, okay, but let's read what it says. It says, thank you, wind, for cooling me off and making a wonderful sound when you hit pine trees. Does that sound like a smart kid?

And they're all like, yeah. So it's a really good lesson about how the expression may not be there in writing, but the intelligence is in their brain. And it's like, what happens there? And I do remember a time he had a teacher who said, there's like, there's some kind of disconnect between his brain and his hands. I'm like, yeah. And now I wish I knew at that time to say yes. And it's dyslexia.

Let's see, I guess, next question, what are some of the, and I think you're actually, we actually led into that with a little bit with that tangent, but what are some of the other misconceptions and myths about people with dyslexia? Well, I think Jonathan Mooney, the advocate, says it really well. He calls him, he says that what people claim is that they're stupid, crazy, lazy. It's like, they're, they're not smart. They're not working up to capacity.

You know, they're, they're, they're putting one over on the teacher. You know, there's also that, oh, well, he's a boy. He'll learn when he's ready. Or, you know, it must be ADD. I mean, this is like all these wonderful things that people say. But when you have people like Henry Winkler and Charles Schwab and Steven Spielberg, who all were not identified until they were adults, and they're like angry about it. They're like, how come nobody knew?

And look at how creative and intelligent and, and wonderful these people are. So, you know, they were not stupid, crazy, lazy. They think different and way outside the box. So recognizing that is, is, is, is difficult, but it, with more knowledge, it, you know, we could, we could get rid of these misconceptions, you know, and not, not go to the negative so quickly. Like, what is going on? Yeah. Yeah. Yeah. I think overall, you know, it's a lot between the misconceptions and what's going on sometimes still with the cultural issues.

A lot of it's a lot of it's really still about the ignorance. Let's say that, a school district is, is, is past that, or some of the teachers have been, have been taught more about dyslexia and the, and best methods. and I think this probably is going to broaden out to best overall methods too, right? But, what, like, what would be a good system for dyslexia, dyslexic kids to be taught to read in schools and maybe other kids too?

Yeah. Well, that's what we're learning, isn't it? Well, it's, you know, you can go back to the national reading panel in 2000 when it was a direct explicit instruction that's based on phonics. I mean, that's really what we need and it's based on thousands of research studies that are controlled and, and scientific at their very basic. And that's what it takes for everyone to learn to read. And in the case of a dyslexic brain, it simply needs more repetition and more time.

And they, you know, I just talked to someone the other day from the reading league and they're really, you know, they, they know what they're doing. And, and, you know, she said, the learn, the brain learns to read the same way, no matter who it is. And so it's just that dyslexics need that, that, that structured approach and much more of it, much more repetition and maybe broken down a little bit more than for regular, for kids that, that aren't, aren't struggling.

But we've got half of our kids are struggling to read. So my work is moving into the whole issue of literacy because frankly, it seems that I've kind of worn out my welcome about dyslexia. Nobody wants to hear about it anymore, but literacy is a cool buzzword. So now we're kind of like, oh, well, it's like an umbrella here. You know, we've got these 20% and then there's 30 more percent at least.

And we're being generous if we only say 50% because it's really bigger than that. So, yeah, I just saw, I just saw a, a video news article, a couple of days ago about a school district that kind of just realized, oh, this, this reading approach, they had the balanced, literacy approach. Isn't working and, you know, are shifting over to a more phonics based approach. And I thought it was interesting because what they emphasized, because I wasn't, you know, as knowledgeable as you are about it when I was watching this, they emphasized that, you know, here's the pictures, which sounds like a good idea.

You get context or whatever, but, but there wasn't, the connection wasn't being made between a sound or even a word like what was the written part and the picture. And so the kids were just looking at the pictures and guessing, like there wasn't that connective piece happening, which I thought was really helpful because, you know, I tend to be like, oh, all kinds of different help to learning styles, right? Like, let's say it's the phonics, but we're going to sing it, you know, like all those different kinds of pieces of learning style.

But I hadn't realized fully like that this approach wasn't making the, it wasn't like teaching that connective piece. I think that's what I, that's what really struck me between the words and, and, and the meaning. And that particular approach, they, they like to talk about the joy of reading and it's like, it's just this magical, mystical thing that happens. And if you use the three cueing system where you get pictures and you imagine what words should you use.

And you, of course, the classic example of that is there's a picture of a horse and the kid says, pony. And it's like, no, you know, it's not pony, it's horse, but it has no connection to reading. It's just saying stuff. And so that has been largely discredited. And my theory is that the Decoding Dyslexia movement made so many people aware. And then the wonderful investigative reporter, Emily Hanford came about and starts figuring out like, oh, we're going from dyslexia to literacy.

And she, you know, her soul to story and all of her podcasts have been so amazing in explaining why this balanced literacy approach is, you know, as she puts it, soul to story. It doesn't work. It's, there are some kids for whom it works, but they're not going to be as proficient if they, as if they would be, if they had the whole five components of reading that are required to be a proficient reader.

And all blended together. So, yeah, I'm pretty upset that we've all been thinking. And, you know, just, just yesterday, I got an email from a mom from a local district who was told by an administrator, oh, it's just a pendulum swing. Don't worry. You know, and it's like, you know, these fads come and go. No, science is not a fad. Sorry. Balance literacy is a fad. Let's get rid of that and go back, go to the basics of what reading instruction needs to be.

Right. Right. Yeah. Yeah. And I think also, this is a little more on the assessment side again, but, but what about, how do you, what are your thoughts on screening? I know you definitely do not think the wait to fail approach, you know, let's see how bad things can go first and then we'll decide that something needs to be checked out. What would, do you have some ideas about like what would be most helpful screening wise?

Well, there are like 40 states now require screening and, you know, it's so simple, like a 30 minute assessment to pinpoint where the issues are for a child. So, you know, it's phonemic awareness, knowledge of phonics, fluency, comprehension and vocabulary. If you can assess for all of those, whether or not they're dyslexic, you can teach them what they need to know and fill in those gaps. Because there's, reading is, you know, as Louisa Moat said, it is rocket science.

There's a lot that's involved in, in, in learning to read and also in teaching to read. So we've got to be more patient about it and take it more seriously. I would have, you know, supposedly there, supposedly there's 90 minutes and maybe they do five minutes of phonics. That's not enough. And I would probably, I would, I would think we need to imbue reading instruction in every part of our education. And then the other big thing that, where I think a lot of kids are being hurt right now and why they should be screened is background knowledge.

You know, I read an article just the other day. If a kid knows something or has been to a baseball game, they, they will understand a story about baseball better. And so background knowledge, and for a lot of kids, they're, they're from a more impoverished background. They don't have those advantages where they can make a leap when they're reading a story about a baseball player or something like that. So, yeah, that's a really important point.

Yeah. Yeah. yeah, we just had a, a bill in Colorado, a Senate bill, I believe to require mandatory dyslexia screening that did not make it out of committee. So, same with California. We're on like our fifth rendition of this one. We'll see if this one goes. They don't even get it out to the committee for a vote. Right. Yeah. Yeah. Yeah. Well, again, if you identify, then you have to address it.

And that's, that's the big stickler problem right there. Yeah. Yeah.