As an elementary school student in Hawaii, Winston Sakurai couldn鈥檛 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鈥檛 appear the way they had in his head.
鈥淚t was very frustrating,鈥 said Sakurai, who, until the end of this past academic year was principal of Ka鈥櫯峢ao School, a K-6 charter school in Hawaii. 鈥淚t鈥檚 misspelled, but I can鈥檛 figure out why it鈥檚 misspelled.鈥
Sakurai鈥檚 mother often sat with him as he did his homework. By 3rd grade, his father鈥檚 co-worker suggested that a computer鈥攁 rare thing in the home in the 1980s鈥攎ight help.
He鈥檚 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鈥檛 until a college professor suggested an evaluation that Sakurai was diagnosed with dyslexia.
The doctor鈥檚 comments at the time鈥"How much more could you have done or how much more successful could you have been if you鈥檇 been diagnosed earlier?鈥濃攈ave stayed with Sakurai over the years. They鈥檝e 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鈥攏ot just those with disabilities鈥攚hen policies are being developed and purchases are being made.
He鈥檚 constantly asking, 鈥 鈥業s there something that we are missing that we can actually help the students with?鈥 鈥
鈥淭hat does not necessarily mean that it is a special education student,鈥 he said. 鈥淚t could mean a student ... who needs additional supports.鈥
Personal experiences shape leadership
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鈥檚 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鈥檚 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.
鈥淲hen you are an early administrator in [your] late 20s or early 30s, you don鈥檛 want to talk about what鈥檚 wrong with you,鈥 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. 鈥淵ou want people to know what鈥檚 great about you.鈥
Similarly, Phyllis Fagell didn鈥檛 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鈥檚 administrator has created a safe environment, where staff can be vulnerable and recognizes that Fagell brings 鈥渟omething different to the table that鈥檚 helpful to seeing the big picture.鈥
鈥淪he also is somebody who is willing to admit her own shortcomings and ask for help,鈥 Fagell said. 鈥淚 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.鈥
Making connections
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 firsthand experiences. Sharing experiences can also go a long way in normalizing and de-stigmatizing lingering, outdated notions of abilities and intelligence, they said.
We don鈥檛 think about individuals who may not be able to see, or hear, or walk when we design or when we plan events, and it just makes our lives so incredibly, unnecessarily difficult, when just a little empathy would go a long way.
It鈥檚 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鈥檚 a 鈥渂lack cloud鈥 of doubt and anxiety that envelops parents when they鈥檙e told that their child has been diagnosed with a learning disability, Mazza said.
鈥淚 think calming the anxieties of parents is really important in my work,鈥 he said. 鈥淭he 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鈥檚 part of who I am and what I can bring to the job every day.鈥
Fagell asks parents if it鈥檚 OK to talk to the child if they鈥檙e struggling with a diagnosis and to share with them the coping strategies she鈥檚 used.
鈥淲hen I disclose to students, it鈥檚 really in the context of helping them understand that it鈥檚 more about thinking that their operating systems work a little differently, and we just need to figure out how their operating system works,鈥 she said. 鈥淚t鈥檚 not about a deficit thinking; it鈥檚 strengths thinking. I often will point out what I see in them.鈥
The goal, Fagell said, is 鈥渢o say this can be managed.鈥 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鈥攁s students whose academic and social needs weren鈥檛 always understood or met鈥攇ive them a unique perspective to analyze the education system, how it鈥檚 not meeting students鈥 needs, and to make changes.
It鈥檚 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鈥檛 use labels like 鈥渓azy, nitpicky, and disorganized,鈥 which can deeply wound students, said Mazza.
He鈥檚 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 鈥淓xecutive Skills鈥 Approach to Helping Kids Reach Their Potential to hold sessions with staff. They also spoke with parents and reviewed the school鈥檚 policies and procedures to identify and help students with learning disabilities.
鈥淚f you don鈥檛 have attention issues yourself, it鈥檚 really hard to have empathy for that student,鈥 said Mazza, who often found solace on the baseball field as a child. 鈥 I encourage my colleagues to find ways to really become an expert on it.鈥
Accommodating students
Sharon Contreras, the former superintendent of North Carolina鈥檚 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?
鈥淲e build beautiful buildings, with these beautiful atriums where the sound is bouncing all over the place, and it鈥檚 just terrible to hear,鈥 Contreras said. 鈥淥r 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.鈥
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鈥檚 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.
鈥淎ll I hear is the magnification of my feet against marble when I am walking through, and the sound just bounces off the wall,鈥 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鈥檚 also tried to ensure that assistive tools like hearing aids are covered or subsidized in district health-care plans. Contreras didn鈥檛 get a hearing aid for about three years after she was told she needed one partly because of the cost鈥攚hich can be up to $5,000.
Deciding when to speak out
It鈥檚 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鈥 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.
鈥淚 thought it was important to tell my story because I think it gave a lot of students inspiration,鈥 Vitti said. 鈥淚 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.鈥
But it was not until he was superintendent in Jacksonville, Fla., that Vitti became more open about his dyslexia鈥攁 decision that came with some personal risks.
But their outspokenness prompted changes.
Vitti and his wife, Rachel, 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.
鈥淚 think if the needs are so profound, students may get left behind,鈥 Vitti said. 鈥淭he 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.鈥
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.
鈥淔or exceptional student education鈥攖hat鈥檚 a major accomplishment,鈥 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鈥攁 perennial issue鈥攆ell, he said.
鈥淎dmittedly, we still have a lot of work to do, and I don鈥檛 want to give the impression that we鈥檝e arrived,鈥 Vitti said. But he said 鈥渁 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.鈥
Sharing experiences builds empathy and competency
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鈥檇 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鈥檛 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鈥檚 teacher and principal.
I think it鈥檚 important to share with everyone that you鈥檙e not alone, it鈥檚 OK, and that鈥檚 who you are.
Sakurai is clear that he鈥檚 not diagnosing students鈥攏or is he in a position to do so.
鈥淎 lot of it is just encouraging them to talk to professionals鈥攚hether it鈥檚 at the school, whether it鈥檚 the pediatrician who can provide referrals,鈥 he said. 鈥淚 feel for parents, and I don鈥檛 want them to feel like they are alone.鈥
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鈥檙e floored when they learn more.
She had prided herself on being an 鈥渆quity leader,鈥 but after her diagnosis, Contreras realized that she wasn鈥檛 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.
鈥淚 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,鈥 Contreras said.
A simple thing she does in her own meetings is to tell people not to say they鈥檙e using their 鈥渙utside voice鈥 or think that by doing so themselves everyone will hear them.
鈥淲e cannot just take for granted that people can hear you,鈥 she said.
Without a frame of reference, it鈥檚 hard for some leaders without disabilities to see that even with the best intentions, they may be excluding some staff, students, and families.
鈥淲e are not trying to be exclusive 鈥 We think we are doing the right thing, but until someone shares the experience I think that it鈥檚 difficult for us to make improvements,鈥 she said.
That鈥檚 why she believes it鈥檚 important for educators and leaders with disabilities to share their experiences.
鈥淚 always say to those of us who have disabilities, don鈥檛 be ashamed and try to be open because it will help others, so many others, when we share our experiences,鈥 Contreras said.
It鈥檚 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, the former Guilford County superintendent, agreed.
A few years ago, Contreras visited the district鈥檚 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 鈥渄evastating,鈥
Mentioning this to the student, Contreras found herself at the receiving end of an enormous amount of empathy and compassion.
鈥淪he was like, 鈥榊ou鈥檙e going to be fine, you鈥檙e going to be great, you don鈥檛 need to worry about it,鈥 鈥 Contreras recalled. 鈥淚t was like one of those movies where your role was reversed because she was comforting me.鈥
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鈥攁nd that she was just like her: Black and deaf.
Confused, Brown went to Twitter to ask who could it possibly be.
鈥淭hat was a big moment for her,鈥 Brown said. 鈥淪he was very excited, and told the story to pretty much everyone in the family.鈥
It was also equally telling that Contreras got as much from the encounter as Leah, Brown said.
鈥淭hat was the first time I had had someone tell me that my child had an impact on their life,鈥 Brown said. 鈥淚t brought me to tears.鈥
Leah sent a card (with a crayon drawing of a cochlear implant on the superintendent鈥檚 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.
鈥淚f she can do it, and she鈥檚 like me, I can do it, too,鈥 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鈥檛 hear? Where did you get your small hearing aids?
鈥淭eenagers ask me, will anyone ever love them? And I assure them they will fall in love, they鈥檒l break up, they鈥檒l fall in love again,鈥 Contreras said. 鈥淚 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.鈥