Hearing about adult experiences may be so seminal a turning point for students. For educators with disabilities, however, deciding when, with whom, and how much to share their experiences is an extremely personal decision — one that comes with personal risks — given that, in wider society, there still is a stigma associated with educators with disabilities, resulting in the fear that disclosing a disability at work may jeopardize their chances for career advancement. Because of this, some choose to keep their diagnoses private; others start to talk about it publicly for the sake of students and their families; yet others do so after witnessing how their own children struggle to get appropriate accommodations in K-12.
After a graduation ceremony, a couple approached Ka’ohao School’s former principal Winston Sakurai and talked about how their son — a 5th grader — took a long time to complete written assignments and often reversed letters when he was spelling. Having heard echoes of his life in that story, out of sympathy he encouraged the parents to consult their pediatrician as well as their son’s teacher and principal so that not only the parents but also the son would not feel alone and isolated — like he once did.
As an elementary school student in Hawaii, Sakurai could not understand why he was struggling so much — and neither could his teachers; Somehow, the words appeared differently on the paper than they did in his head, despite the fact that he knew how to spell them. His parents often sat with him as he did his homework; This continued through grades K 12. It was not until a college professor suggested an evaluation that he was diagnosed with dyslexia. “How much more could you have done or how much more successful could you have been if you’d been diagnosed earlier?” was the doctor’s comments at the time — something that has stuck with him over the years, inspiring his devotion to ensuring that students with disabilities are seen, heard, understood, and engaged with access to the accommodations they need to succeed, especially when policies are being developed and purchases are being made.
Detroit schools superintendent Nikolai Vitti chose to keep his diagnosis of dyslexia a secret early in his career. It was not until his older child — a student in the Miami-Dade district at the time — needed special education services that he realized how unresponsive the system was to the needs of students with individualized education programs, or IEPs. Having become not only more familiar with, but more sensitive to the challenges of those with IEPs, he — a superintendent in Jacksonville, Fla., at that time — started sharing his child’s story in an effort to inspire students and give parents hope that it was worth fighting the system to get the resources that students need.
It was also then that Vitti started going above and beyond about becoming more open about his dyslexia. He backed the establishment of GRASP Academy, a district-funded school for students with dyslexia, to provide them with the intensive interventions they needed to catch up on grade level before returning to mainstream interventions so that they could feel more at ease. Here, the Orton-Gillingham method, an intervention strategy for working with students with dyslexia, was taught to all K-12 teachers in Jacksonville, which culminated in the district being fully staffed with certified special education teachers. Availing himself of his personal insights, he also assembled a team to enhance the learning experiences of students with disabilities by setting up meetings between parents and staff to regularly evaluate every student with an IEP.
Similarly, Sheridan School’s counselor Phyllis Fagell avoided talking about her ADHD while working with students for more than a decade. And everything changed once she came to know her administrator; She not only created a safe environment where staff could be open and honest about their struggles and shortcomings and ask for assistance but also continued to remind everyone that each person brought a unique perspective to the table that was valuable for seeing the big picture. It was her administrator that brought out the best in her — and she, in turn, was willing to do the same for her students.
Drawing on her experiences engaging with students with disabilities, both seen and unseen, Fagell made the case that, more often than not, it came down to educators taking cues from students and parents and asking parents whether they could talk to their children if they were struggling with something. In doing so, it was important that educators be clear that they were not diagnosing students — nor were they in a position to do so in the first place. Disclosure to students had to be done in the context of helping them understand that it was not about deficit thinking, but rather about thinking that their operating systems functioned slightly differently, and ensuring them that anything was possible just by starting from figuring out how their systems work.
Seven Bridges Middle School’s principal Joe Mazza also did not feel comfortable talking about his diagnoses of ADHD, depression, and anxiety until a few years ago. It was when he realized that the education system failed students as much as it did educators; It was still unclear how many educators with disabilities worked in K-12, despite the fact that some of them, like students, also faced uphill challenges getting adequate accommodations to do their jobs. And this gave him a unique perspective to analyze the education system and how to make changes.
First, Mazza advised that teachers have access to the proper professional development on brain science, not only to have empathy for and assist students with learning disabilities but also to completely avoid labeling, which can deeply wound students. In order to help his staff gain a better understanding of executive functions and cognitive development, he then started holding professional development sessions. He even went so far as to invite the authors of the book “Smart but Scattered: The Revolutionary “Executive Skills” Approach to Helping Kids Reach Their Potential” to hold sessions with staff, speak with parents, and review the school’s policies and procedures to identify and help students with learning disabilities. All of this was done so to encourage his colleagues to find ways to ensure equitable education for all, including students with disabilities, because “If you don’t have attention issues yourself, it’s really hard to have empathy for that student,” in the words of the principal who once often found solace on the baseball field as a child.
Likewise, to assist her fellow district leaders in broadening their notion of equity, Sharon Contreras, the former superintendent of North Carolina’s Guilford County Public Schools in Greensboro, N.C., shared her experiences as a person with a disability. She was diagnosed with sensorineural hearing loss in her late 30s, and now barely 1% of her hearing is still functional. It was then that she started to realize that she was not always including students with disabilities and that even in districts with equity offices, the focus often tended to be on race and, sometimes, gender, and less on disabilities. She, therefore, began to pay close attention to ways to make facilities more comfortable and welcoming for students with disabilities and how to enhance their learning experiences.
Contreras not only invited staff to training sessions on interacting with students with disabilities but also held annual back-to-school meetings for students who were deaf or whose family members were deaf. In doing so, she made sure that every gathering was made more easily accessible by giving careful consideration to where they were held, what kinds of support were provided, and whether interpreters were available for the participants. Additionally, she also tried to ensure that district healthcare plans covered or subsidized assistive tools, like hearing aids, because they could cost up to $5,000 — and because, as she recounted from time to time, she herself did not get a hearing aid for about three years after she was told she needed one.
Consistently sharing experiences can go a long way in significantly normalizing and de-stigmatizing lingering, outdated notions of aptitude and intelligence. However, again, it can be challenging for educators to strike the right balance between when, with whom, and how much to say, given that parents are understandably enveloped in doubt and anxiety when told that their children have been diagnosed with a learning disability and that 91% of the anxiety that children experience comes directly from a parent. Without a frame of reference, some educators and leaders without disabilities may find it difficult to see this even with the best intentions and end up excluding some staff, students, and families. That is why it is paramount that educators and leaders with disabilities share their experiences and accomplishments with students with disabilities so that they too can dream big.
