I live in parallel universes—the universe of special education and the universe of not-so-special education. For most of high school, I spent half of every school day in a resource room and the other half in AP classes. Every day I was split in two. Students like me are called “twice exceptional” because we have disabilities and we are also considered gifted.
“Gifted” and “disabled” are just two of my many labels. Autistic, attention deficit hyperactivity disorder, dysgraphia, Tourette’s, and microcephaly are a few other terms often applied to my apparently atypical brain. They are not, however, the way I define myself.
In one universe, I am expected to conform with the mostly unspoken expectations and assumptions about students with “special needs": that we are different from other human beings (and a little bit less human), that getting a minimal educational experience is good enough for us, that being taken to a pep rally means we’ve been “included,” and that “dis"-abilities that can be seen are more real than those that cannot.
In the other universe, I must conform with the rules of a peculiar society—the culture of “regular” education. In the world of regular education, if I need to get up and move around, I have to ask permission. If I need extra time to finish a test, I miss out on what the “regular” class is doing. If the teacher asks the students to choose a group to work on a project, I am rarely chosen.
In both universes, people don’t always say what they mean, but I am still expected to understand what they’ve said. Speaking the truth is OK, as long as it’s not too true. If I don’t look someone in the eye or shake their hand, I am seen as being rude.
I am told that I must “self” advocate, but I know that if I point out to my teacher that I have limited stamina and that using up my store to memorize all 43 African nations means that I will have little energy left for the higher order (and way more interesting) analysis project she also assigned, my comments will not be viewed as advocacy. (For sure, I must not point out the research that confirms the limited value of rote memorization.)
If I explain that my inability to explain how I arrived at an answer to a calculus problem does not mean I do not understand, or that I cheated, or that I am lazy, I know that my explanation will not be accepted.
On my college applications, if I disclose my disabilities, will I truly be viewed the same as other candidates, or as someone trying to gain an unfair advantage or elicit sympathy?
Although it is tempting to stay silent, I choose to speak out. Unfortunately, my voice is mostly drowned out by the voices of people who do not really see me, do not really know me, and who do not usually seek to hear my thoughts or ideas or dreams. I often feel like a stranger in a strange land.
Like many students with disabilities, getting an “appropriate” education has been a constant battle to be understood. Imagine having to negotiate with your mail carrier every day to get your mail. Or provide daily evidence that wearing glasses doesn’t mean you can’t read or that your glasses don’t give you an unfair advantage.
The battle started quite early and for me resulted in being home-educated until high school—less stressful for me and for my family. But all of us realized that I would need to experience a more typical school setting to achieve my goal of going to a top research university.
I am but one of millions of both students and teachers for whom the special education system is not working. That is why, with the help of my family and others, we started an advocacy group, JackBeNimble. We aim to reimagine the special education system. In our RISE! (ReImagine Special Ed) forums, we bring students, families, educators, administrators, and policymakers together to actually get to know each other, to hear each other, and to basically spend a few hours standing in each other’s shoes.
Our goal is to help communities reimagine their special education systems, so that they work for everyone. Closing the empathy gap through communication is the first step. It’s pretty ironic that it is an autistic person (me) trying to get “neurotypical” people to be more empathetic!
Now imagine an education universe in which there is no such thing as “special” or “gifted.” Imagine instead that every student has an individualized education program which they help create and which is delivered by educators who have the appreciation, resources, and training they need and deserve. That is the universe in which I want to be educated.
A version of this article appeared in the December 05, 2018 edition of Education Week as Navigating ‘Parallel Universes’