Learning with Disabilities: How Personalized Learning Helps That Kid Find Her Community

I’ve always loved to learn.

I was always that kid growing up—you know, the one who tried to read dictionaries, served as the perpetual teacher’s pet and constantly peppered adults with questions that I’m sure made me seem more annoying than precocious.

Not only did I treat the local library’s children’s summer reading program as a life-or-death matter, but I inevitably ended my weekly trips there by severely overestimating the number of books my 60-pound frame could accommodate on the journey from the circulation desk to the car. I’d totter into the parking lot with two armfuls of novels and nonfiction alike, using my chin to hold the tower in place. My mom just shook her head.

Eventually I upgraded to a tote bag. I’d drop books in as I perused the stacks, then hoist the bag over my shoulder Santa-style, reveling in the fact that it was chock-full of knowledge on my obsession du jour: at times it was French, photography, Shakespeare and ventriloquism.

If you’re reading this book, you probably know a kid like that. Heck, maybe you were that kid.

Then you’ll understand what I mean when I say I very well could not have been that kid. In fact, I could have ended up the complete opposite.

I was born with a very rare neurological condition—estimated to affect about 50 people worldwide—that rendered me unable to feel pain, temperature and touch to the same degree as most people. I’m also deaf and have an assortment of other chronic illnesses.

Early on, my parents knew I’d need special supports—particularly where my hearing, or lack thereof, was concerned—but they were determined to ensure my education was equal to that of my peers. They’d both grown up attending private schools, and so had all my cousins. So, as I approached school age, my parents made an appointment at a respected local private school to inquire about enrolling me.

They were met with a sympathetic apology. “Your daughter is welcome to come to school here,” my parents were told, “but we can’t guarantee that we can provide the accommodations she needs.” As a private institution, the school wasn’t required by law to supply the same supports as its public counterparts. And while the people there weren’t unwilling to teach me, they knew they couldn’t give me what I needed to succeed.

And what I needed was a lot: an assistive hearing device called an FM system; a hearing specialist to help me learn to use it; in-school speech, occupational and physical therapy; an adaptive physical-education curriculum; an aide (when I was younger) to help with tasks like tying my shoes and doing art projects; an Individualized Education Plan (IEP); and an intervention specialist, to help manage it all.

Megan Zahneis, disability advocate.

I received all of those services—and more—at the public school district I attended from kindergarten through my senior year of high school. I couldn’t have asked for a better academic experience there, and I don’t at all fault the private school I could have attended for a lack of resources that was beyond their control. (Had I attended that school, I wouldn’t necessarily have been deprived entirely of those resources, but to get them would have required a significant amount of logistical maneuvering and disruption to my school day.)

My point is only that growing up with a disability had a profound effect on my education. Luckily, that effect was—and is—an overwhelmingly positive one. But sadly, the pendulum swings the other way for many kids with disabilities.

In America, we have plenty of legal precedent to ensure that students with disabilities don’t fall between the cracks of our education system. Legislation like the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) is what allowed me—and countless others—to succeed. It’s not a cure-all, but it “levels the playing field,” as many educators say, through protocol like that IEP, which provided the supports I needed at no cost to me or my family. These laws have established a foundation of educational equivalency for kids with disabilities—one that’s incredibly important and, unfortunately, not a universal standard.

But education for anyone, as we know, is (or ought to be) more than just a state-mandated curriculum or the run-up to a graduation test. Done right, education is life-long, life-wide and life-deep, cradle to grave and classroom to boardroom.

Arthur Chickering, a pioneering educational researcher, set forth in 1969 a sort of manifesto for the then-emerging field of student development. In it, he describes seven “vectors,” among them something he calls “discovering purpose.” That’s something we all aspire to. Chickering defines it as “discovering what we love to do, what energizes and fulfills us, what uses our talents and challenges us to develop new ones, and what actualizes all our potentials for excellence.”

Chickering was writing about college students—and student-development theory traditionally refers to higher education—but his findings are common sense for students in all stages of life, and such intellectual heavyweights as Sir Ken Robinson and Jean-Paul Sartre have discussed the importance of discovering one’s passion.

That’s why the disability equation extends far beyond what that private school could or couldn’t provide for me, or the obstacles and accommodations that were listed on my IEP. For students with disabilities, who may be more likely than most to find themselves pigeonholed into certain areas—or into traditional education as a whole—the principles of L3 Learning take on new importance. And where my experience distinguishes itself from that of many of my disabled peers is where “personalized education” takes on new meaning.

As with many educational success stories, mine starts with a good teacher—dozens of them, actually, who were willing to personalize my education not just by speaking louder or rearranging seating to make sure I could hear their lessons, but by engaging with me after class and in the margins of my papers—showing me that I was a worthy and capable charge, day after day and year after year.

In doing so, they avoided what I believe is a common pitfall when it comes to educating kids with disabilities: reducing them to their accommodations or to the benchmarks that are set to help them progress. It’s easy to do, given that a student’s accommodations may noticeably set her apart from her classmates, and that the school and national legislation each rightfully require adherence to certain standards.

While at face value, accommodations are beneficial—and, in many cases, necessary—they can distract from what matters more: finding and focusing on the disabled student’s strengths and interests. To tap into those properly, students need educators like mine.

My best teachers not only encouraged me to capitalize on the areas of study I enjoyed most, they also realized that they shouldn’t be my only influences. They recognized the importance of connecting me with others like me, who were successfully working in the same fields that I wanted to work in. In short, they championed the importance of disabled mentors for disabled students.

There’s a reason I gave up on my one-time dream of becoming a professional baseball player: because I never saw any disabled people on the diamond (well, that and the fact that my fastball topped out at something like 25 miles per hour). Yet I maintain my aspirations of becoming a professional writer; and that’s largely because I have admired the work of, and met in person, many disabled folks who write for a living.

That world was opened to me as a senior in high school, when I met Elizabeth, a novelist and blogger who’s one of the most astute editors I’ve ever had—and who also happens to be blind. Since Elizabeth and I first connected at a conference for students with disabilities, I’ve counted on her for incisive critiques of my work, motivation to put pen to paper, and affirmation that writers with disabilities can and do “make it.”

Just as I worried about how realistic a career in writing was, I often wondered whether many of the milestones of a typical life path—going to college, living independently, getting a job—were appropriate, or even attainable, for me. That is, until I was introduced as a preteen to a woman living with the same neurological condition as me. Though her symptoms differ somewhat from mine, Kim, I soon discovered, is a successful and capable adult who has a master’s degree, is happily and gainfully employed, and regularly gives back to her community by volunteering at local schools.

Without Kim—who today refers to me as her “little sister”—and Elizabeth, I wouldn’t be attending college or writing this chapter. And while my parents and other family members have been nothing short of incredible influences for me, there’s something special to be said about having mentors who have quite literally been there and done that.

Every disabled youth needs Kims and Elizabeths in their life, people who can expose them to an entirely new form of education: the personalized kind that 9 Billion Schools espouses, the kind that simply can’t be acquired in a classroom, the kind that comes in the form of community.

Every disabled youth needs Kims and Elizabeths in their life, people who can expose them to an entirely new form of education: the personalized kind that 9 Billion Schools espouses, the kind that simply can’t be acquired in a classroom, the kind that comes in the form of community.

We all feed off a sense of belonging—it’s human nature—and that notion is particularly true when it comes to students with disabilities. It doesn’t so much matter what form that community takes. I’ve found it in Kim and Elizabeth, in the student disability group that I helped create at my university and on the internet. What’s crucial is the purpose of that community: nudging the student toward whatever it is he or she is most passionate about.

For me, that wound up being not French or ventriloquism, but writing, storytelling and learning. You know, being that kid.

This essay was originally published in “9 Billion Schools: Why The World Needs Personalized, Lifelong Learning for All.”

Megan Zahneis is a student at Miami University studying journalism. There she is a member of the editorial board of the weekly campus newspaper, The Miami Student, and editor of The Miami Student Magazine. She enjoys exploring the intersection of leadership and disability through her work with the Miami University Students with Disabilities Advisory Council (SDAC), of which she is a founding member. With SDAC, Megan works to promote pride and identity in the Miami University disability community and has delivered disability-related presentations at several professional-development conferences. She also serves on the board of the Disability Rights, Education, Activism and Mentoring (DREAM) national organization for college students with disabilities and is a core staff member at the Ohio Youth Leadership Forum (OYLF) for high school students with disabilities.