By the third grade I had progressed from being one of “those kids” to being the “special ed.” kid. I was found to have multiple language-based learning disabilities and attention deficit disorder. When the educational psychologist broke the news to my mom and me, it was as if someone had died. Tissues on the table. Hushed tones. Mirrors covered. Sat shiva for the death of my normality. The tragedy of my problem wasn’t lost on me, even at 8 years old. People thought something was wrong with me, and I knew it.
Let me tell you about my relationship with the school desk. From my first day at Penny Camp Elementary School in 1982, it was fraught.This is how it went down: Five seconds into class, the foot starts bouncing; 10 seconds in, both feet; 15 seconds, I bust out the drums! After a few minutes, it’s all over. I’m trying to put my leg behind my neck. No, that desk and I didn’t get along. For some kids it was just school furniture, but for me it was a form of enhanced interrogation that would have made Dick Cheney smile.I was shamed for not sitting still. Shamed at home at the dinner table with my dad, where I heard “Stop it stop it stop it what is wrong with you?” And I was shamed in school. I had a second-grade teacher, Ms. C — I have had many gifted teachers in my life, for which I am grateful, but Ms. C wasn’t one. When my foot was bouncing, she would stop class, point at me and say at the top of her lungs, “Jonathan, what is your problem?”
Sitting still was hard enough, but I also struggled with reading and was placed in the “dumb” group. Teachers didn’t actually call us the “dumb” group, but let’s be real: Everyone knew which group was the “smart” group and which wasn’t — my school had the California Condors, the Blackbirds, the Bluebirds, and then over in the annex trailer building, the Sparrows. I spent the day reading “See Spot Run” while the Condors were probably finishing up “War and Peace.”
Joking aside, no matter what the reading groups were named, kids knew their place on the intelligence bell curve. “See Spot Run” is not a bad book. Nice narrative structure. Good moral tale. But I didn’t want to be caught dead with “Spot” when I was 10 years old. So as I headed across the room to find my reading group, “Spot” went in my backpack, under my shirt, because as I walked by the other kids the taunts would start: “Jonathan, go back to the dumb reading group.”
Reading out loud in class was a special kind of hell. I couldn’t focus on the page and would excuse myself and hide in the bathroom, hoping I would miss my turn. I never did. Those 10 minutes in front of the class fumbling and stammering gave me an extra helping of humiliation and shame.
By the third grade I had progressed from being one of “those kids” to being the “special ed.” kid. I was found to have multiple language-based learning disabilities and attention deficit disorder. When the educational psychologist broke the news to my mom and me, it was as if someone had died. Tissues on the table. Hushed tones. Mirrors covered. Sat shiva for the death of my normality. The tragedy of my problem wasn’t lost on me, even at 8 years old. People thought something was wrong with me, and I knew it.
Wearing this label, I found myself in a variety of settings focused primarily on remediating my deficits. Ground zero was spelling. Every Friday was spelling test day. Every day leading up to spelling test day was remediation day. Monday I was drawing my spelling words in the sand. Tuesday I would build them with blocks. Wednesday, flash cards. And Thursday I would do interpretive dance to get those words into my head. Friday? I’d fail the test, every time. I was the round peg that needed to be squared, a revenue stream for the remediation industrial complex; I spent hours a day being fixed.
I was turned into a “patient” who needed treatment rather than a human being with differences to be empowered. Fixing takes its toll. My self-image plummeted. I had a great teacher named Mr. R who asked me to describe myself. I told him I was the “stupid” kid. I gave up hope.
In the middle of sixth grade my parents withdrew me from Penny Camp, and after trying out other options, I dropped out of school. I struggled with severe anxiety and depression at age 10.
I survived this time in my life because of my mom. On a good day, Colleen Mooney, on her tiptoes, is 5 foot 1. She barely graduated from high school and never went to college. She raised my brother and two sisters on welfare in San Francisco. She also has, let’s just say, an interesting voice and vocabulary. She sounds like Mickey Mouse and she curses like a truck driver. So you can imagine when I was having a hard time in school, if you were a principal or a teacher doing wrong by her son, you did not want her in your office. But she often was. She knew in her heart that her child wasn’t broken and didn’t need to be fixed.
My mom was right. When I think back on my school experience, I realize it wasn’t the A.D.D. or the dyslexia that disabled me. I’m not naïve about the bad stuff that comes with my brain. I struggle with executive functioning and organization, I have explored the feasibility of stapling my car keys to my forehead, and I spell at a third-grade level. But guess what? Good things come with this brain.
Research shows that learning and attention differences correlate with enhanced problem solving, creativity and entrepreneurship. What disabled me were limitations not in myself but in the environment: the passive learning experience where students sit at a desk most of the day; a narrow definition of intelligence conflated with reading and other right-brain skills; and a medicalization of differences that reduced my brain to a set of deficits and ignored the strengths that go hand in hand with many brain differences.
I’ve come to believe that I did not have a disability, as it is common to say, but experienced disability in environments that could not accommodate and embrace my differences. Ability/disability is not a fact in the world but a social construct, what Michel Foucault called a “transactional reality” created by public policy, professional power and everything in between. All of us, even the so-called normal, move in and out of states of ability and disability every day. It’s our strengths, weaknesses, eccentricities and differences that define our humanity.
As a society, America has the rhetoric of differences down. On the first day of kindergarten we are told that we are all special. But then the bell rings and that message changes: Now sit down, keep quiet and do what everyone else is doing. They tell you what to learn, when to learn and how to learn. We love the individual; now stop being different.
I never did get “fixed.” The rest of my education was up and down. I struggled in cookie-cutter classes and thrived when teachers accommodated my learning differences. My mom told me if I survived high school, college and life would be better. She was right.
In the fall of 1997, after two years at Loyola Marymount University, where my learning differences were fully accommodated, I transferred to Brown University, where I graduated with an honors degree in English literature. I still can’t spell or sit still, but I now use support and technology to mitigate my weakness and build a life on my strengths. I don’t feel stupid anymore and I know that I — and others like me — can live good lives despite these challenges.
A fundamental battleground for every civil rights movement has been the rejection of the idea that you’re the problem and a demand for cultural and systemic change. Whether one believes that people like me are disabled or persons with a disability, or simply different, we all require the same things: schools, workplaces and communities that are inclusive of the diversity of human minds and bodies. We have to fight for every person’s right to be different.
Jonathan Mooney is the author of “Learning Outside the Lines” and “The Short Bus: A Journey Beyond Normal.” He is a co-founder of Eye to Eye, a national advocacy organization for people with learning differences.
Disability is a weekly series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field.
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