Dyslexia Is Not a Bad Word, Advocates Say. Schools Should Use It
The parents of the advocacy group Decoding Dyslexia Wisconsin pressed for years to see this 11-word definition enshrined in state law: "Dyslexia means a specific learning disability that is neurobiological in origin." Last month, they succeeded as Wisconsin Gov. Tony Evers signed a bill into law that includes the definition and makes Wisconsin one of nearly 40 states to require dyslexia guidebooks for school districts.
The push is part of a long and ongoing fight to get the learning disability defined in state law and persuade educators to say the word dyslexia. It comes amid a nationwide debate over dyslexia—what it is, what it means for children, and how schools should address it.
The public struggle is between renowned reading researchers who think "dyslexia" is an overused word and that the heavy-focus on phonics instruction called for to help struggling readers is an unproven overreach and the parents and disability advocates who argue on the other side that schools and teacher preparation programs are not doing nearly enough to help children learn to read.
"Understanding dyslexia is very important to those who actually exhibit the characteristics. We do more harm by not talking about it and sort of trying to sweep it under the rug," said Sherry Mee Bell, a University of Tennessee, Knoxville, special education professor. "Instead, people just continue to bicker over it, and children are the ones who are hurt."
The widespread belief that schools are not supposed to use certain words, such as dyslexia or dyscalculia, to describe children with disabilities is fueled in part by concerns that the districts would have to cover the cost of tuition at a private school if they couldn't meet the needs of the child. The practice was so prevalent in school districts across the country that, in 2015, the U.S. Department of Education issued guidance assuring states and districts to not feel reluctant to use the terms dyslexia, dyscalculia, or dysgraphia when describing a particular child's learning needs.
"One of the myths and taboos is that we're not even supposed to say the word [dyslexia] in schools," said John Humphries, the superintendent of the Thorp, Wis., schools. "Having a guidebook on dyslexia is really going to help parents be able to have important conversations with their schools about what reading difficulties look like and about improving instruction for kids who struggle."
The mandate to develop a guidebook on dyslexia did not come fast enough for some families.
For months, Kari Baumann traveled hundreds of miles to Illinois from her home in northern Wisconsin for private tutoring for her dyslexic son.
Before the tutoring, the 10-year-old was headed to 5th grade and reading at a kindergarten level. His struggles led him to question his self-worth and shed friendships, Baumann said.
"His friends [would] come over and want to play video games and my son couldn't read the video games," said Baumann, the state co-lead for Decoding Dyslexia Wisconsin. "He was starting to say things like, 'I'm stupid, I'm never going to be able to do anything in life. What's the point of me ever going to school? I can't read.'"
There is general consensus in the scientific community that dyslexia exists.
Yet, while dyslexia is a reading disability, not all reading disabilities are dyslexia—which is marked by a readers struggles with recognizing and decoding words, which can lead to difficulty with reading comprehension. Research has shown that some students with reading disabilities can decode or recognize words, but still struggle to comprehend written text.
The federal Individuals with Disabilities Education Act names dyslexia as an example of a disability included under the broader term "specific learning disabilities."
Yet, there are those, such as renowned literacy expert Richard Allington, who still deny that dyslexia exists.
But for most, the debate centers on who gets diagnosed with dyslexia and who does not—and what resources are dedicated to the issue.
A 2019 brief from the International Literacy Association cites the work of Donna Scanlon, a professor of literacy in teaching and learning at the State University of New York, Albany, in arguing that labeling struggling readers does not help identify their specific learning needs or indicate exactly what types of support and instruction will help them.
"The terms 'dyslexia' and 'reading disability' or even 'learning disability' tend to be used interchangeably," Scanlon said in an interview with Education Week. "Where do you draw the line or lines between who is dyslexic or reading disabled and who's not?"
Drs. Sally and Bennett Shaywitz, the founders of the Yale Center for Dyslexia and Creativity, want to broaden understanding of the scientific underpinnings of dyslexia, and push for public policies aligned with that knowledge.
Using brain scans, the couple discovered that, in children with dyslexia, neural circuits are disrupted in the occipito-temporal cortex, an area of the brain linked to skilled reading.
"These folks who deny dyslexia are saying that this is just a fancy way to say the students are struggling to read," Bennett Shaywitz said. "The scientists know about dyslexia. That has yet to get translated down to the level of teaching children to read."
Based on their decades-long longitudinal study, the Shaywitzes posit that 1 in 5 children in U.S. schools are dyslexic—a claim that critics, and even some dyslexia advocates, take issue with.
Karen Wixson, a former dean of the colleges of education at the University of Michigan and the University of North Carolina, Greensboro, is concerned that the couple conflates all reading difficulties with dyslexia, overstating the prevalence of the learning disability.
"Do I believe [dyslexia] exists? Yeah, there are kids that have some hardwiring problems ... [but] it's not 1 in 5," said Wixson, who currently works as a senior strategy advisor on the National Assessment of Educational Progress (NAEP) reading assessment for the Educational Testing Service and is a member of the International Literacy Association.
State-level dyslexia legislation could mandate screening assessments and instructional programs that rope in children who don't need the heavy phonics-focused support such bills often call for.
"Maybe half the kids that end up having to go through that program don't need it, don't want it," Wixson said. "It's just not, to us, an approach that's sensible or sensitive to individual kids' needs."
The International Literacy Association's concerns have filtered down to its state affiliates.
Allington, a past president of ILA, said he was "reasonably sure" that dyslexia doesn't exist in a presentation at the organization's affiliate conference in Tennessee this past December. Allington, who also attacked proponents of state legislation that provides students with targeted interventions, resists the idea that there are one-size-fits-all approaches to help students who struggle with reading, whether they have dyslexia or not.
"If only [Tennessee Governor Bill Haslam] had called me, I would have said, 'Just veto it and shoot whoever made this bill,'" Allington said, of the state's Say Dyslexia law, passed in 2016.
He also criticized Decoding Dyslexia Tennessee, a parent advocate organization that pushed for the bill, saying that they "managed to find some idiot ... to put it into law."
In the days after Allington's remarks, state Education Commissioner Penny Schwinn took to Twitter to refute his statements, writing that "Dyslexia is real ... The 'Say Dyslexia' law is important and right."
In an email to Education Week, Allington offered something of a mea culpa for his statement, saying he should have been more cautious with his words.
"Yes, I am sorry I made those comments about hanging or shooting some of the dyslexia advocates," wrote Allington, who retired as a literacy professor from the University of Tennessee, Knoxville, in 2017, "sorry, because the hubbub my comments have created will likely diminish the validity of my arguments ... Arguments based in facts not fantasies."
Allington's statements have had another unintended effect: stoking activism in the state and elsewhere, said Anna Thorsen, an advocate with Decoding Dyslexia Tennessee.
"His intent was to shut us down," she said, "but instead I feel this reorganization and this energy from policymakers, from educators, of really wanting to solidify that dyslexia is real."
For some families, experiences with dyslexia have been far from fantasies.
Katie Kasubaski home schools her two children, a 12-year-old girl and 10-year-old boy, both of whom are dyslexic.
Kasubaski pulled her children out of her local school system because she was dissatisfied by a lack of support and acknowledgement of their disability.
"It was devastating because you just think at some point they'll just learn to read," Kasubaski said. "I read to them all the time. I read so much that I would lose my voice and we would listen to audiobooks."
"You have to wonder when people make statements like dyslexia doesn't exist, if they ever see children, if they ever sit and work with a child with dyslexia," said Nancy Mather, a University of Arizona professor emerita in the department of disability and psychoeducational studies who's written several books about learning disabilities.
While Decoding Dyslexia Wisconsin celebrated the passage of the state's first law last month, its legislative push is far from over.
Advocates there are now advocating for a slate of bills that would require education agencies to hire dyslexia specialists and schools to identify and address students with dyslexia.
Leaders of the 2,200-member Wisconsin State Reading Association oppose the bills. During a February public hearing, the group's leaders argued that focusing specifically on the needs of students with dyslexia could drain resources from other students.
"I'm not discounting anything that dyslexic students and their families go through," said association president Debra Cromer, a reading specialist in the Bangor, Wis., schools. "I'm just saying we need to be looking at all students and their needs."
Under the new state law, representatives from the state reading association and the International Dyslexia Association-Wisconsin will co-chair the advisory committee that develops the dyslexia guidebook.
"It was really unfortunate saying things like, by virtue of addressing the needs of children with dyslexia, the schools won't have enough time or will have less time to support the children who don't have dyslexia," Humphries, the Thorp superintendent, said of the association's argument for not supporting the legislation. It's "contrary to our duty to support all children."
Vol. 39, Issue 24, Pages 1, 16Published in Print: March 4, 2020, as Dyslexia Is Not a Bad Word, Advocates Say. Schools Should Use It