How dyslexia became a social justice issue for Black parents

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This article was originally written by Dec 25, 2022


BOSTON – The worry nagged at Roxann Harvey from the time her children were in kindergarten. They couldn’t name all their letters, much less associate them with sounds. Teachers offered tepid assurances (some kids take longer than others) and frustrating advice (you should expose them to books). But Harvey worked in a library, so both there and at home, each child had shelves full of books. The teachers insisted they would catch up, Harvey recalled. “I started to wonder if I was being irrational.”

Yet as kindergarten and then first grade passed by, her children – a girl and her younger brother, two grades apart – never caught up. The gap only grew. For years, Harvey pushed the school to provide her children with help from a specialist trained in a multi-sensory reading program that helps struggling readers make connections between words and sounds – a scarce resource in many Boston public schools. The entreaties went nowhere. “Let’s give it time,” the teachers told her.

For both of her children, it wasn’t until second grade that teachers finally grew concerned. For her son, in particular, the blithe assurances gave way to ominous warnings: “We’ll all be lucky if one day he’s able to read an article in the newspaper,” one teacher told her.

An estimated 5 to 15 percent of the population has dyslexia, the most common language disability, which hinders a person’s ability to read words correctly and efficiently. But in Boston and countless other communities, Black and Latino families have a much harder time than their White peers accessing two key tools to literacy: an instructor trained in how best to teach struggling readers the connections between letters and sounds, or a private school focused on children with language disabilities. Nationally, these teachers and schools are scarce and coveted commodities, generally accessible only to those with time, money and experience navigating complicated, sometimes intransigent bureaucracies.

In recent years, some dyslexia activists across the country have joined forces with Black and Latino leaders distraught over unequal access – jointly positioning “the right to read” as a revived civil rights movement.

“A lot of people have started talking about dyslexia as a social justice issue,” said Nicole Patton-Terry, director of the Florida Center for Reading Research. “And you’re seeing them stand next to Black and Brown folks who just want high-quality education for their kids.”

In Boston, data shows that in the city’s schools – public and private – White students have greater access than Black or Latino students to the most intensive, effective reading supports. In the public system, campuses with larger White student populations tend to employ significantly more teachers trained in programs designed specifically for students having difficulty learning to read, according to a Washington Post-Hechinger Report analysis of previously unreleased data obtained through an open-records request in the spring.

At the handful of schools with a majority-White population, there’s an average of 3.5 such specialists. Schools that are 15 to 50 percent White have two specialists, on average. And schools where fewer than 15 percent of students are White – the district average – employ just one such trained professional on average.

Overall, 82 percent of White students (excluding those attending schools that don’t have any elementary grades) have access to at least one specialist at their school, compared with 70 percent of Latino students and 61 percent of Black students. More than half of White students attend schools with two specialists, compared with 36 percent of Black and Latino students.

Boston Public Schools declined multiple interview requests over the past four months. In a written statement from the district, new superintendent Mary Skipper said: “We’re responding to the need of the moment. One thing the pandemic revealed, in particular, is the further disparities in literacy achievement, which requires that we provide much more explicit evidence-based reading support for all students in every school.”

The focus is on shoring up capacity at “high-needs” schools, the district statement said. “Over the past two years,” it said, “the district has been executing on a plan to dramatically improve the delivery of literacy instruction with an emphasis on racial equity.” Dozens of BPS educators are receiving training in a specialized approach to reading instruction, known as Orton-Gillingham.

Nationally, there are persistent racial and socioeconomic gaps in reading performance. White eighth-graders outperformed Black eighth-graders by 24 points and Hispanic eighth-graders by 17 points, according to National Assessment of Educational Progress scores released in October. The reasons are multifaceted: Black and Hispanic students are more likely to attend schools with fewer resources and higher teacher turnover. They are more likely to come from low-income homes where getting basic needs met can interfere with school and learning. And they are less likely to have teachers from their racial and ethnic background, a factor that numerous studies have shown depresses academic achievement.

In recent years, a growing number of experts, advocates and parents have argued that educators are often too quick to blame poor reading outcomes on families, particularly low-income ones, overlooking schools’ complicity in perpetuating unequal access. “Blame for low literacy rates is placed not on the system itself, but on individual students and their families,” said a May report from Advocates for Children of New York.

Boston’s patchy and uneven safety net reflects a pervasive national problem, said Resha Conroy, founder of the New York-based Dyslexia Alliance for Black Children. “We’ve long talked about book deserts – geographic locations where there isn’t a lot of access to books,” she said. “We can apply this to structured literacy desserts – places where if your child needs a reading intervention or support, it’s very difficult to find. You have to go outside of your community.” (Structured literacy includes methodical and explicit instruction on how to build words out of letter combinations.)

The Bronx, with a larger share of Black and Latino residents than any other New York City borough, is one example of a structured literacy desert, Conroy said. It is the lone borough without a school focused entirely on children with language-based learning disabilities. And Conroy could find only one private tutor in the Bronx advertising expertise in an evidence-based program for helping struggling readers, compared with scores of such tutors in the other four boroughs.

Conroy became involved in racial equity in literacy after witnessing the treatment of her son, who is Black and has dyslexia, by the public schools in New York’s Westchester County. “I saw low education expectations for my son, and I heard loaded language suggesting that it was okay for him not to read,” she said during a 2022 conference focused on literacy. “I saw the stage being set to make the failure to teach him to read acceptable.”

In Boston public schools, several forces contribute to the uneven distribution of reading specialists. Research has shown that White students are more likely than Black students to be classified as dyslexic, even after controlling for literacy skills and socioeconomic status. That diagnosis typically makes it easier to obtain school-based supports. White teachers may be less likely to suspect dyslexia or another reading problem in Black students, because on average they hold lower expectations for Black students’ academic potential, according to numerous studies. (In Boston public schools, about 59 percent of the teachers are White, compared with about 15 percent of students.)

Boston’s special-education system is much more effective at assigning and attempting to remediate behavioral and emotional disabilities than reading problems, according to Elizabeth McIntyre, senior counsel at the EdLaw Project in Boston. That is partly because there is an extensive set of separate classrooms – and even entire schools – for children with emotional and behavioral disabilities but nothing similar for students with profound reading challenges.

Edith Bazile worked as a special-education teacher and administrator in the district for 32 years. “I would see everything addressed for some students except for what really needed to be addressed, which is the reading disability,” Bazile said. (The district does have a network of separate classrooms or strands for students with learning disabilities, some of whom have dyslexia. “Many teachers” in these classrooms have training in specialized reading approaches, according to the district. But unlike many other districts, Boston does not advertise any of these programs as having an explicit focus on language and reading disabilities.)

District officials have vowed to shore up reading instruction across the board. The district has been committed to phonics and the science of reading for years, its statement says, including investing in Fundations, “an explicit and systemic phonics program” for kindergarten through third grade, since 2014. The district says it has also significantly expanded professional development in the science of reading, including training over 800 educators in LETRS (Language Essentials for Teachers of Reading and Spelling), which schools educators in the “science of reading,” including how students learn to “decode” letters on the page and form meaning from words.

Harvey suspects that multiple factors influenced how long it took her to get reading help for her children. Her daughter’s second-grade teacher eventually endorsed time with a reading specialist, and the girl began 45 minutes of small-group instruction with the specialist each day. Her son, however, had behavioral challenges in addition to academic ones, and the school focused overwhelmingly on the behavior. Small for his age, with consistently high energy, he would run out of classrooms and hide under tables or inside recycling bins. Nearly every day, school staffers would call Harvey, asking her to come pick him up early.

In second grade, school officials recommended transferring the boy, who has autism and dyslexia, to a program exclusively for youths with disabilities – one that Harvey knew would be more focused on behavior than reading. (A state audit chastised the system for sending so many boys of color into such programs.) “By second grade, there was a really strong drive to push him out of [regular] school,” Harvey said. School officials complained that he wasn’t motivated to learn. “They were trying to build a track record of a ‘problem child,'” she said.

She believed her son’s behavior would improve if he got some help with his reading. But the school, she said, refused to give him the same kind of extra help that her daughter now received. One time, Harvey rewrote the plan the school had produced outlining her son’s special needs and services (called an individualized education program), irate over inaccuracies and language that “blamed the child,” she said.

None of her son’s evaluations suggested that he lacked the intellectual capacity to learn to read. The boy, a Pokémon aficionado, has an unusually strong curiosity and memory, reciting at request the backstories and special powers of Pokémon creatures and amassing 600 Pokémon cards, his mother said.

Harvey’s efforts eventually paid off during that second-grade year. The same reading specialist who worked with her daughter volunteered to work with the boy during her lunch hour. To Harvey, it wasn’t a coincidence that the woman was one of the few Black teachers at the school. Harvey believes the specialist saw the child’s potential in a way that other teachers failed to.

With the help of the sessions, Harvey’s son began to progress, learning new letters and sounds every week.

In Boston, families of color also have dramatically less access to private schools focused on reading remediation – and not just because they are less likely to be able to afford the tuition. The Carroll School and the Landmark School, the two largest and best-known schools for Boston-area children with language disabilities, enroll just a handful of Black students, according to the most recent data from the National Center for Education Statistics. Both of the schools are in predominantly White Boston suburbs. At Carroll, 3 percent of the school’s 442 students were Black in the 2019-20 school year, and at Landmark, 3 percent of its 506 students were Black that same school year. (Landmark says 16 percent of students identified as people of color last school year. Carroll says that in recent years, a quarter of the school’s new families have identified as people of color.)

Many of the students who attend Landmark get public assistance with tuition. They participate in what’s known as private placement: a federal guarantee that school districts must pay costs at a private school if they can’t meet the needs of a child with a disability. Families often have to spend thousands – even tens of thousands – on private evaluations to prove their child has a disability and then lawyers who can help build a case that the school district has failed to meet their needs.

Jonathan Reovan and his husband have spent more than $50,000 over the past 18 months in an effort to get their two Black adopted children – a 9-year-old girl and a 13-year-old boy who both have dyslexia, among other special needs – access to private placement and stronger reading services in Boston. The money has paid for a lawyer, an advocate who charges $150 per hour, neuropsychologists, and an intensive tutoring program for their daughter. The couple hope to recoup some of it from the school district. But they’ve felt the financial strain in the meantime, especially since Reovan left his job as a financial analyst at Harvard four years ago to advocate full time for the children. “We’ve drained the retirement funds – there’s practically nothing left,” he said.

“It’s a terrible equity issue,” Reovan said. When it comes to private placement, “you have to pay to play.”

Even when a school district agrees to private placement, families often discover that they hardly have their pick of private schools. One Boston mother spent years fighting to place her 11-year-old daughter, who is dyslexic, only to learn that the girl “didn’t fit the profile” at Landmark, according to the mother and McIntyre, who represented the family. School officials told the mother that her daughter had spatial-reasoning challenges that they could not address but provided no other details.

Josh Clark, Landmark’s head of school, said it is true that there is “a specific profile of students that we think we serve well” at his school, and that includes many students with not just a language-based disability but also attention-deficit/hyperactivity disorder. Black and Latino students are more likely on average, he adds, to get diagnosed with an intellectual or emotional disability, because of “an inherent bias in the referral and screening process.” And they are less likely on average to have the resources to access private placement. Both of those factors contribute to the racial disparities in enrollment. “I think that Landmark is earnest in its efforts, and we know that we should do more and will do more to address the vast need across the community,” Clark said. Landmark is working with more than 50 public school districts, he said, to strengthen their language-based programs.

Reovan has experienced consistent challenges in finding language-focused private schools that will accept his children. He applied in February for his daughter to attend the Carroll School, planning to pay the $59,000 tuition out of pocket initially, and then sue the school district to get reimbursed. But Carroll officials said the girl’s “cognitive profile” did not align with her peers and refused to admit her, Reovan said.

“They are very picky,” he said. “If you have anything beyond simple dyslexia, they tend to reject you.”

Carroll’s chief enrollment and financial assistance officer, Stacey Daniels, said student diversity is a priority, but she added that the school groups students in cohorts with comparable cognitive, academic and social-emotional backgrounds. For some applicants, she said, the school doesn’t have an appropriate cohort. “For the last six years, we have been truly, deeply focused on compositionally changing the student body,” she said.

In October, Reovan made the difficult decision to move with the children to the family’s second home in rural New Hampshire. In Boston, the public and private systems tried to steer the boy toward a school focused on behavior rather than reading, Reovan said. Meanwhile, the school district denied the family’s request for tutoring reimbursement for the girl. “We exhausted so many options for [our son] and we were met with such fierce resistance to helping [our daughter] just learn to read in Boston Public Schools,” Reovan wrote in an email.

Both of Harvey’s children made steady progress once they got specialized, small-group help. Yet the struggle hardly ended. Harvey, who now serves as chair of the Boston Special Education Parent Advisory Council, said she has had to push back several times against attempts to curtail her children’s services: “At points in meetings, I heard: ‘They seem to be doing well. I don’t think we need this anymore.’ And I had to be very clear about the fact that they still weren’t reading on grade level.” Last school year, Harvey’s daughter exceeded the final level in her reading program, and she’s closing in on grade-level reading skills: As a starting ninth-grader, she tested at the seventh-grade level. And she loves it: Harvey says she sometimes reminds her daughter not to read while she walks, so she doesn’t trip.

Although she never had the money to pay for private tutoring for her children, Harvey considers herself lucky. She came into her battle with the city’s education bureaucracy with assets that not every Boston public school parent possesses: an extensive education herself, and the flexibility to advocate several hours a day when she needed to. And although, at 12, her son prefers the Dog Man books, he could read a newspaper if he wanted to.