As an elementary school student in Hawaii, Winston Sakurai couldn’t understand why he was struggling so much, and neither could his teachers. He knew how to spell the words, but somehow when he put them on the paper, they didn’t appear the way they had in his head. “It was very frustrating,” said Sakurai, who, until the end of this past academic year was principal of Ka’ōhao School, a K-6 charter school in Hawaii. “It’s misspelled, but I can’t figure out why it’s misspelled.”
Sakurai’s mother often sat with him as he did his homework. By 3rd grade, his father’s co-worker suggested that a computer—a rare thing in the home in the 1980s—might help. He’s convinced the computer, a Commodore 64, which lasted all the way through high school, was one of the main reasons he made it through K-12. But it wasn’t until a college professor suggested an evaluation that Sakurai was diagnosed with dyslexia. The doctor’s comments at the time—”How much more could you have done or how much more successful could you have been if you’d been diagnosed earlier?”—have stayed with Sakurai over the years. They’ve shaped his commitment to ensuring that students have access to the tools they need to flourish.
He also thinks more broadly about the needs of students—not just those with disabilities—when policies are being developed and purchases are being made. He’s constantly asking, “‘Is there something that we are missing that we can actually help the students with?’ ” “That does not necessarily mean that it is a special education student,” he said. “It could mean a student … who needs additional supports.” Almost 7.2 million students and youth are served through the Individuals with Disabilities Education Act (IDEA), according to federal data for the 2020-21 school year. But it’s unclear how many educators with disabilities work in K-12. And like students, some of those educators also face uphill challenges getting adequate accommodations to do their jobs. As with the wider society, there’s still a stigma, educators with disabilities say, and some, especially those who are early in their careers, fear that disclosing a disability at work could jeopardize their chances for career advancement. “When you are an early administrator in [your] late 20s or early 30s, you don’t want to talk about what’s wrong with you,” said Joe Mazza, the principal of Seven Bridges Middle School in Chappaqua, N.Y., who only became comfortable talking about his diagnoses of ADHD, depression, and anxiety a few years ago. “You want people to know what’s great about you.”
Similarly, Phyllis Fagell didn’t publicly talk about her ADHD in a school setting while working as a counselor in public schools for more than a decade. Now a counselor at the Sheridan School, a private K-8 school in Washington, D.C., Fagell said the support from her administrator has made it easier to be open about her challenges. Fagell’s administrator has created a safe environment, where staff can be vulnerable and recognizes that Fagell brings “something different to the table that’s helpful to seeing the big picture.” “She also is somebody who is willing to admit her own shortcomings and ask for help,” Fagell said. “I think when you have a leader like that, it makes it safe to admit what you struggle with. She brings out the best in me, and I, in turn, can do the same for our students.” Leaders with disabilities who are comfortable sharing their experiences with teachers, students, and their school communities say they can provide students and families with answers to questions, especially those adjusting to new diagnoses, from their first-hand experiences. Sharing experiences can also go a long way in normalizing and de-stigmatizing lingering, outdated notions of abilities and intelligence, they said.
It’s a delicate balance, and how much to say and when to say it can be tricky. It often comes down to taking cues from parents and students and getting parental permission.
There’s a “black cloud” of doubt and anxiety that envelops parents when they’re told that their child has been diagnosed with a learning disability, Mazza said. “I think calming the anxieties of parents is really important in my work,” he said. “The research says that 91 percent of the anxiety that kids have comes directly from a parent. If I can step in and help with that before those things happen, that’s part of who I am and what I can bring to the job every day.” Fagell asks parents if it’s OK to talk to the child if they’re struggling with a diagnosis and to share with them the coping strategies she’s used. “When I disclose to students, it’s really in the context of helping them understand that it’s more about thinking that their operating systems work a little differently, and we just need to figure out how their operating system works,” she said. “It’s not about a deficit thinking; it’s strengths thinking. I often will point out what I see in them.” The goal, Fagell said is “to say this can be managed.” She shows students how she stays organized, a multisystem approach that includes a weekly planner, day planners, several alarms, and backup systems to ensure that nothing falls through the cracks. Those educators say their personal successes also show students, who may be struggling academically and socially, that anything is possible.
Further, their experiences inside and out of school—as students whose academic and social needs weren’t always understood or met—give them a unique perspective to analyze the education system, how it’s not meeting students’ needs, and to make changes. It’s important to ensure that teachers have access to the right kind of professional development on brain science to help students with learning disabilities so they don’t use labels like “lazy, nitpicky, and disorganized,” which can deeply wound students, said Mazza. He’s held professional development to help his staff improve their understanding of executive functions and cognitive development, inviting the authors of the book Smart but Scattered: The Revolutionary “Executive Skills” Approach to Helping Kids Reach Their Potential, to hold sessions with staff. They also spoke with parents and reviewed the school’s policies and procedures to identify and help students with learning disabilities. “If you don’t have attention issues yourself, it’s really hard to have empathy for that student,” said Mazza, who often found solace on the baseball field as a child. “ I encourage my colleagues to find ways to really become an expert on it.” Sharon Contreras, the former superintendent of North Carolina’s Guilford County Public Schools in Greensboro, N.C., has sensorineural hearing loss, a type of progressive but permanent hearing loss that can result from damage to nerves in the inner ear. After being diagnosed in her late 30s, Contreras now has only 1 percent of her hearing. That diagnosis has led Contreras to think deeply about the learning environment for students who are deaf and hard of hearing.
Are schools, for example, considering acoustics when constructing buildings with wide open spaces and how they affect students who are deaf or hard of hearing? “We build beautiful buildings, with these beautiful atriums where the sound is bouncing all over the place, and it’s just terrible to hear,” Contreras said. “Or we build them where individuals with mobility issues have to go all the way around the building to find the ramp to get into the school.” Contreras has thought a lot about how to make facilities more comfortable and welcoming for students with disabilities, especially those who have difficulty hearing. She’s navigated these challenges as an adult who has had to testify in statehouses, many of them old and not constructed with accommodations for people with seen and unseen disabilities. “All I hear is the magnification of my feet against marble when I am walking through, and the sound just bounces off the wall,” Contreras said of her visits to the statehouse in New York to lobby on behalf of the school district when she was the superintendent in Syracuse. After noticing during a school visit that the program for students with hearing loss was on the bottom floor of a building, Contreras worked to move many of the programs for students with disabilities into newer buildings. And as part of an RFP process for a nearly $2 billion bond program in the district this spring, all the firms were asked about their track record designing for and enhancing the learning experiences for students with disabilities beyond complying with state accessibility laws.
Guilford County has also offered significant training to teachers and staff on working with students with disabilities. During her tenure, Contreras invited staff to an annual back-to-school event for students who are deaf or whose family members are deaf. She’s also tried to ensure that assistive tools like hearing aids are covered or subsidized in district health-care plans. Contreras didn’t get a hearing aid for about three years after she was told she needed one partly because of the cost—which can be up to $5,000. It’s an extremely personal decision for educators with disabilities to decide when to share their experiences and with whom. Some have kept their diagnoses private; others started talking about it publicly to help students and families. Some did so after their seeing their own children struggle to get appropriate resources and accommodations in K-12. Others believe that showing vulnerability builds trust. Nikolai Vitti, the Detroit schools’ superintendent, did not share early in his career that he had dyslexia. That changed when his older child, at the time a student in the Miami-Dade district, where Vitti was the chief academic officer, needed special education services and the family realized how unresponsive the system was to the needs of students with IEPs, or individualized education programs.
That experience made Vitti not only more familiar with, but more sensitive to, the challenges of those with IEPS and the many reasons why school systems were not fully implementing those plans. “I thought it was important to tell my story because I think it gave a lot of students inspiration,” Vitti said. “I think it gave parents hope that it was worth fighting the system sometimes to get the resources that students need, and that moment of fatigue and frustration with trying to work through challenges with special needs can lead to success.”
But it was not until he was superintendent in Jacksonville, Fla., that Vitti became more open about his dyslexia—a decision that came with some personal risks. But their outspokenness prompted changes. Vitti and his wife, Rachel, supported the creation of GRASP Academy, a school the district backed with district and philanthropic funds for students with dyslexia that he said was not at all at odds with mainstreaming. “I think if the needs are so profound, students may get left behind,” Vitti said. “The vision was always to provide students with the intense interventions, [allow them to] catch up and be at grade level, and then go back to mainstream intervention so that they could feel more comfortable.”
Beyond GRASP, all K-12 teachers in Jacksonville were trained in the Orton-Gillingham method, an intervention strategy for working with students with dyslexia. In Detroit, where years of state emergency management left the entire system stressed, Vitti has again drawn on his personal insights and assembled a team to improve the experiences of students with disabilities and their families. Special education is now called exceptional education in Detroit. The district went from having about 100 certified special education teacher vacancies during the school year to being fully staffed. “For exceptional student education—that’s a major accomplishment,” he said. Salaries for those certified teachers have also increased, and the district set up meetings between parents and staff to reevaluate every student who had an IEP because of systemic misclassification during emergency management. Amid a number of other changes, numbers of complaints—a perennial issue—fell, he said. “Admittedly, we still have a lot of work to do, and I don’t want to give the impression that we’ve arrived,” Vitti said. But he said “a lot of our parents would say there is a new energy, a greater commitment, a greater sense of empathy, a much stronger responsiveness that they, as families and as students, have.” Hearing adult experiences also be significant turning point for students. Sakurai remembers a couple approaching him after a graduation ceremony and asking whether he remembered talking to them at an open house when their son was a 5th grader. They’d talked to Sakurai about their son taking a long time to complete written assignments and reversing letters when he was spelling. They knew he was smart, but they couldn’t figure out what was wrong. He heard echoes of his life in that story. He encouraged the parents to talk to their pediatrician, and their son’s teacher and principal.
Sakurai is clear that he’s not diagnosing students—nor is he in a position to do so. “A lot of it is just encouraging them to talk to professionals—whether it’s at the school, whether it’s the pediatrician who can provide referrals,” he said. “I feel for parents, and I don’t want them to feel like they are alone.” Contreras shares her experiences as a person with a disability with her fellow district leaders to help them broaden their notion of equity. Often, she said, they’re floored when they learn more. She had prided herself on being an “equity leader,” but after her diagnosis, Contreras realized that she wasn’t always including students with disabilities. And even in districts with equity offices, the focus often tends to be on race and, sometimes, gender, and less on students with disabilities.
“I talk about the trainings they can offer, about making meetings more accessible, about being thoughtful about where they have meetings, … what kinds of supports are in the meetings, do they have interpreters for the participants,” Contreras said. A simple thing she does in her own meetings is to tell people not to say they’re using their “outside voice” or think that by doing so themselves everyone will hear them. “We cannot just take for granted that people can hear you,” she said. Without a frame of reference, it’s hard for some leaders without disabilities to see that even with the best intentions, they may be excluding some staff, students, and families. “We are not trying to be exclusive … We think we are doing the right thing, but until someone shares the experience I think that it’s difficult for us to make improvements,” she said. That’s why she believes it’s important for educators and leaders with disabilities to share their experiences.
“I always say to those of us who have disabilities, don’t be ashamed and try to be open because it will help others, so many others, when we share out experiences,” Contreras said. It’s equally important to be open with students, educators with disabilities say. Vitti, who attended the Harvard Graduate School of Education, shares his accomplishments with students, so that they, too, can dream big. Contreras agreed. A few years ago, Contreras visited the district’s Jefferson Elementary School in Greensboro and was greeted by Leah Brown, a 12-year-old student who wears a cochlear implant. The visit came just days after Contreras herself was told that she may need a similar implant in the future, news she said was “devastating,” Mentioning this to the student, Contreras found herself at the receiving end of an enormous amount of empathy and compassion.
“She was like, ‘You’re going to be fine, you’re going to be great, you don’t need to worry about it,’ ” Contreras recalled. “It was like one of those movies where your role was reversed because she was comforting me.” The meeting was also meaningful for Leah, who was so excited that she told her mother, Nova Brown, that the most famous person in the world had visited her school—and that she was just like her: Black and deaf. Confused, Brown went to Twitter to ask who could it possibly be. “That was a big moment for her,” Brown said. “She was very excited, and told the story to pretty much everyone in the family.” It was also equally telling that Contreras got as much from the encounter as Leah, Brown said. “That was the first time I had had someone tell me that my child had an impact on their life,” Brown said. “It brought me to tears.”
Leah sent a card (with a crayon drawing of a cochlear implant on the superintendent’s ear) to cheer up Contreras. Leah, whose favorite subject is reading and wants to be an artist, babysitter, and a host of other things when she grows up, has found huge inspiration from having met Contreras. “If she can do it, and she’s like me, I can do it, too,” Leah said. Contreras has also gotten letters and e-mails from students, asking about her hearing loss: Did you have hearing aids when you were a little girl? Are you like me and can’t hear? Where did you get your small hearing aids? “Teenagers ask me, will anyone ever love them? And I assure them they will fall in love, they’ll break up, they’ll fall in love again,” Contreras said. “I let them know that no one who matters or is worth anything will ever hold it against them for having hearing loss or being deaf or wearing hearing aids or a cochlear implant.”
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