The Short Bus: A Journey Beyond Normal

The Short Bus

Prologue: The Short-Bus Story

I have to admit, in the spirit of full disclosure, that I once harbored aspirations of becoming an after-school special. On June 2, 2003, I was waiting in the lobby of the Waldorf-Astoria hotel in Manhattan for Ernest, an independent movie producer interested in optioning the story of my life. We were to have breakfast that morning with a producer from Merv Griffin Entertainment, during which I was to pitch myself as the subject for an after-school special.

Shifting my weight back and forth, I turned over the situation in my mind. In less than twenty-four hours, I would be leaving New York to fly to Los Angeles, where I had grown up, to pick up an old short school bus (the kind used to take some kids with disabilities to special ed programs). My plan was to transform this vehicle into a makeshift RV and depart from California on a two-month journey around the United States.

On the road I’d interview and spend time with people, like myself, who had once been labeled abnormal or disabled. I wanted to see how they overcame—or didn’t—being labeled different. I wanted to see the lives they fashioned for themselves. Waiting for Ernest, watching old ladies with plastic faces and big diamonds pass by, I suddenly realized that my trip really wasn’t after-school-special material. I wanted to empower people, but I also wanted to be real, completely honest, and unsentimental.

A short-bus rider myself, I had grown up in special education, having been labeled learning disabled with attention problems at the end of third grade. I was one of those kids who grew up chilling out with janitors in the hallways; one of those kids who were always on a first- name basis with Shirley, the receptionist in the principal’s office; one of those kids who grew up hiding in the bathroom to escape reading out loud. I dropped out of school for a while in sixth grade and had a plan for suicide by the time I was twelve. A high school guidance counselor confided that people like me ended up flipping burgers. That prediction did not come true; I eventually graduated from Brown University with an honors degree in literature and published a book, in part about my experiences. I had believed, when I arranged to meet the producer, that all this could be the subject of a movie. Now I was realizing I had to tell it my way.

Ernest, who had a handlebar mustache and wore a blue western vest, tapped me on the shoulder and escorted me to the restaurant, where we were to wait for the producer whom I thought of as the Man. Kind and quiet, Ernest looked like a fusion of accountant and, given the mustache, retired porn star. As we sat and drank coffee, he told me about his work. He had read my first book, Learning Outside the Lines, and thought my story was pretty inspiring stuff. You are an American success story, Ernest said. I mulled that over as I ate my fancy eggs. Is that what I wanted, to be what television considered inspiring? After about fifteen minutes, the producer arrived, and Ernest rose to stand at attention. It was clear the Man made all the decisions.

I was used to selling myself, selling my story. So after the pleasantries, I leaned forward to deliver my well-rehearsed pitch, but something strange happened: when I opened my mouth nothing came out. My old song and dance about overcoming my disability seemed like a fraud. I had wanted this meeting but just couldn’t do it. I couldn’t speak about my resilient mom, or my determination to be successful, or even the injustice I faced in school. Did I tell you all that I’m about to leave for a trip around the country in a special ed school bus? I asked. Ernest looked downcast. After a little explanation of what a short bus was and who rode it, the conversation stopped. The Man adjusted his belt and said, Why the hell would you do that?

I did and did not have an exact answer to this question. My reasons for this trip shifted around like the sides of a Rubik’s cube; the moment I thought I had something pinned down, the other side was screwed up, jumbled, and needed to be rearranged again. Why would I go back to my experiences of disability when I had transcended all that? What did I hope to find out there back in the bus? Sitting at that table, I was at a loss. What emerged, however, was as close to an answer as I could muster: I’m going because of two kids, named Bobby and Clay.

I first met Bobby in the fall of 2000, somewhere in the middle of America, shortly after graduating from college, on my book tour. Book tour was actually an optimistic term. I’d planned this jaunt personally during a summer spent holed up in my pathetic apartment spamming disability Web sites and contacting unsuspecting moms. I’d offered to come to their towns, free of cost, sleep in their homes, and lecture to any audience that they could scrounge up. After managing to get some invitations, I packed my bags, perfected my authoritative yet sincere speaking voice, and set off for self-help stardom. I wanted to sell my book and cap off my rise-to-success story. (From hiding in the bathroom to Ivy League student to best-selling author.) I was under the illusion that I would be healed by fame, that recognition would save that little kid who used to hide in the bathroom during reading class.

Then I met Bobby Glass. I’d been standing in a school gym, answering questions, but I could not take my eyes off this young kid in the back of the line. He was no more than five feet tall, and while I autographed books, I watched him snake back and forth with the rhythm of the line. I couldn’t take my eyes off his colored eyeglasses. They were a deep purple, and they seemed custom-made for him. I nodded as people asked me questions: So what is the best medication for ADD? You’re so normal; most kids aren’t like you. How can my Jane go to an Ivy League university?

When Bobby had introduced himself he said, You ever seen these? He gestured at his glasses. I laughed. Seen ’em? I was told to wear a pair, man. These colored glasses were often prescribed as a way to fix dyslexia and other reading problems. I hadn’t seen them in a long time. They took me back in time. No shit? Bobby said. I’m sixteen now; they prescribed these for me when I was ten. Don’t need these things anymore, never did, but I keep them as a reminder of how they tried to fix me all the time: the shrinks, the school, my parents. Minutes later, after our bond had become undeniable, Bobby made a confession. He took off his glasses for a second, then said, You know I snapped once. I had had enough.

Bobby was in sixth grade the day that he decided to just give up. His mom had dropped him off at the bottom of the gravel pathway that led to school, hoping he would walk to class by himself. His clothes didn’t feel right that morning, although every day he wore almost the same thing: the same hat, the same pants, and the same red shirt.

At school, Bobby walked up and down the hall looking for that one spot where he could hide. This happened almost every day, and the teachers always laughed at Bobby. Sometimes other things would be said, things he would never forget. With him, teachers could say anything. All he could ever see of one teacher was a big dot. This was because of all the dots that she put on his work—a dot on every word that was not written nicely, two dots for the misspelled ones.

That day, the air was filled with the kind of silence that comes before a snowstorm or a lightning storm. Bobby felt the snow starting as he headed down the road home that day. I saw Bobby in my mind as he described walking home, visualized his purple eyeglasses moving silently through the snow. He entered the house the way he always did, past his dog, Jake. No one was home, and he knew no one would be there for a while, unless the snow got bad and his mom left work early. But it was quiet.

Bobby Glass’s note was found in his backpack after he tried to kill himself, after he was discovered, just in time. He had fashioned a noose above his bed.

When Bobby finished telling me his story, the cafeteria had long emptied. But he kept on talking. Did I tell you I just got into college, early admission to study math? It had nothing to do with those purple eyeglasses or anything they did to fix me. You know, they’ve come up with a lot of fancy diagnoses, a lot of talk about disorders and disabilities, but not much has changed, has it? Why? Jon, that’s my question because we seem more disabled than ever.

The fall turned into the winter, and I was still on the road, but because of the way Bobby’s tale sank into me, all the other stories seemed more vivid and important. These weren’t so-called success stories like mine, but the testimonies of kids who still locked themselves in bathrooms and threw up during reading class; memories from those who hid under their beds and had ulcers; tales of others who pulled out their hair and scratched their faces until they bled. I heard stories of people who grew up in segregated schools—in institutions for the disabled. I heard firsthand accounts from people who were sterilized.

But I also heard stories of transcendence—of artists who attributed their creativity to their disabilities, of people who learned to think beyond the labels pinned on them. What I was learning was the notion of disability as, inherently, a social construct. These experiences were not those of people intrinsically defective or broken but were tales of human variance, differences, and diversity.

All the stories that were coming to me as I traveled were so different. But something I couldn’t yet name held them together. I realized what this glue was, months later, when I gave a lecture at a special education class and came upon what could be the essence, symbol, and vehicle of my journey: the short bus.

It was terrifying to be back in a special education classroom, the kind that I spent countless hours in as a kid. The irony of the situation was not lost on me: I had graduated from Brown less than a year earlier and now I was back in special education. I remember dreading my special education teacher’s condescending smile and her patronizing voice as she said, Try to act normal today, OK. I was there to give a lecture, supposedly no longer a short-bus rider but rather a role model of success for these kids. But I sure as hell didn’t feel that way. Sitting in that classroom waiting for the kids, my skin still crawled like it had almost twenty years earlier and my stomach filled with anxiety that felt like bees stinging my insides. I had a few minutes before I had to talk, as kids from other local schools arrived, so I found a seat in the back of the room, hoping to disappear.

I wasn’t alone for long, though. I could see out the window that the school buses were slowly arriving. Not big buses, like most kids rode to school, but short ones, the symbol of disability and pain in my life. I knew it well. Kids started filing into the classroom, filling it with the white noise of childhood. One voice, though, broke through.

His name was Clay, and he was probably about eleven or twelve years old. Clay got off his short bus, walked into the class, and went right to the back of the room and found a seat next to me. He was humming the tune to If You’re Happy and You Know It Clap Your Hands. He turned to me and, laughing, said, The tard bus is always late. I laughed. He continued, It has ADD. We’re working on getting it some Ritalin. That’s what the normal kids say anyway. Might as well beat them to the punch, don’t you think?

I reached my hand out. I’m Jon. I said. I’m Clay. You’re the guy who’s talking, right. I shrugged. I guess so. For the next fifteen minutes as we waited for the rest of the students, Clay and I shot the shit. Then we were quiet and watched the other students filling up the classroom. Sitting there with Clay was like looking at a ghost of myself. Clay was a punk with an attitude. He was the kind of kid who grew up in the hallway but had spirit that couldn’t be destroyed. Because he moved around too much, his teacher sometimes strapped him to his chair with seat belts that cut into his waist and made him bleed. Clay’s experience and his attitude reminded me of the kid I used to be. Before I started elementary school, I used to run around with cowboy boots and kick people in the shins. I used to yell at the top of my lungs, Normal people suck!

I looked around the special ed room and out to the short bus in the parking lot. Even at this point in my life, I couldn’t get try to act normal out of my head. I wasn’t like these kids who were really fucked up. I was past that now. I tried not to look at them. Clay tapped me on the leg and broke me out of my trance. A giant head wearing a helmet floated in front of me. He sat facing me with his arms crossed, like a little man, smiling from ear to ear. He didn’t say anything. He wants to give you a hug, Clay said. That’s his deal. He gives people hugs in the morning.

Stunned, I shrugged my shoulders, and the boy in the helmet leaned over and hugged me. He held on tight. Then, without saying a word, he left. For the rest of the time before my lecture, the boy in the helmet went from seat to seat and hugged every kid. I couldn’t take my eyes off him. His smile just kept getting bigger and bigger. Sometimes he had to stop and brace himself. Sometimes he fell over. But he got up and moved on to the next kid. Clay told me the jocks called him Helmet Boy and beat him up. His doctors told his mom he was retarded and should be institutionalized. In a different era, he might have been lobotomized or sterilized.

That little man broke something inside of me. I looked around the room and saw faces that were so familiar. The people I had forgotten about from my journey in special ed came rushing back to mind. I saw Steve, my best friend from junior high school, who could hardly read. I saw the way he looked at me the day I gave him the nickname Stupid Steve. I saw all the people I had tried to act like I wasn’t like, trying to be normal. In this classroom were faces that drooped with Down syndrome, faces that twitched uncontrollably, faces that were covered by the straps of their helmets, faces of the kids who threw up most days in reading class but held it in so the teacher wouldn’t know. There were faces of kids who were told every day that they needed to be normal, had to be normal, had to change themselves. These kids, beyond our surface differences, were very much like me.

Sitting in that class, lost somewhere between the past and the present, for the first time in a long time, I felt part of something. I had never felt a part of anything trying to be normal. I just felt like an outsider. But there were no outsiders in the special ed room and on the short bus because we are all considered to be freaks. But in this community being a freak was normal.

This united feeling went away, though, as the teacher quieted the classroom in preparation for my lecture. The room became dead silent. It was a bone-dry silence that seemed to crack. This was the silence of shame, and the only thing that broke it was the sound of these kids trying to disappear. Once the class was quiet, the teacher stood up and began her introduction. Now students, we are honored to have Mr. Mooney here. My eyes glazed over as I stood up and prepared to talk. But the teacher continued. "Mr. Mooney used to be like you. Be respectful of Mr. Mooney. Try to act normal, OK?"

I stood in front of the class shocked. In that small moment, something shifted inside of me. I wanted to shake that teacher and tell her to tell them that they were beautiful. I had usually begun my lectures to kids by recounting my academic success at Brown University. But not that day. Good morning, I said to the class. The first thing I want people to know about me is that I think normal people suck, guys, they suck. I had not said that for a very long time. The teacher was already giving me that You’re in trouble, Mister look. The rest of the kids were saying, Normal people suck over and over again.

Needless to say, the lecture did not last all that long. When it was over, I found Clay again and gave him my e-mail address. As I walked away, I heard Clay’s voice. He was singing what he had been humming earlier that morning, first quietly, then as loud as he could:

If you ride on the short bus clap your hands

If you ride on the cheese bus, clap your hands

If you’re a tard and you know it,

and you’re not afraid to show it,

If you’re a tard and you know it,

clap your hands.

What a simple, common, and destructive message: You’re not normal. How many people have been told, regardless of who they are, You’re not normal? But where did the idea of normalcy come from? How many lives has that idea screwed up? And how do people learn to reject the message that they have to conform to this way of being? In that moment, an idea was forming inside of me.

It would be easier to say that I left Clay and bought a short bus the next day, but that is not how life unfolds. I embarked on a different trip, departing for New Zealand in June of 2001, almost a year to the day after I graduated from Brown. The trip was set up over e-mail with a woman named Moira, whom I hadn’t spoken to until the morning of my departure when she called at 4:00 a.m. and said, Jonathan, bring your winter woollies; it’s winter in New Zealand. That was it, nothing more, and I boarded a plane and flew for two days.

When I arrived at the Wellington airport, I expected to be welcomed with a traditional Maori greeting, which included a band and fifteen dancers. (For such a distinguished and honored guest, nothing less would be acceptable, Moira had written.) But when I got off the plane there were no dancers, no signs with my name; in fact there was nobody to greet me. I wandered around the Wellington airport for an hour, alone, waiting for a woman I had never met. I began to get nervous until I heard Jonathan Mooney over the intercom. I finally found Moira, who was short (about five feet tall), stout (round like a kettle), with gray hair and gray wandering eyes. She greeted me and seemed nice enough, but when she spoke I couldn’t understand a word. She mumbled something and then motioned in the direction of the parking lot. I followed her to the car, a filthy two-door Commodore. The seats were ripped, and the interior reeked of smoke. When I got in, she talked as I watched the Wellington sky turn colors and wished I were a cloud speeding back toward the other side of the world.

She lived with her chain-smoking eighty-year-old mother in a middle- income housing project on the outskirts of Wellington. Coughing, I listened to this old broad talk about the labor strikes of the 1920s and ‘30s, the Cook Islands, and the fundamentally unjust outcome of the treaty of Wanganui. After the history lesson, we went to a rugby match. Finally, I was taken to Moira’s friend’s house, where I was to sleep in an open room on a crazy-looking pull-out bed. Before we parted, Moira said, Tomorrow you’ll meet our traveling crew and You should think about what you’re going to say, dear. That night I lay on the mattress on the floor, watching the night sky, terrified and lonely. This wasn’t the trip I was supposed to be on.

The next day I met my traveling companions. I learned that Moira had a traumatic head injury that affected, among other things, her sense of time, organizational abilities, and general personality stability. I also met my crew. There was Allen, our driver—a retired cop who I quickly learned was a recovering alcoholic. (Over the course of our six weeks together, Allen got it in his head that I, too, was in recovery. I didn’t have the heart to tell him that, in fact, I quite enjoyed drinking. But Allen was my only friend here, so for weeks I accompanied him many nights in small towns across New Zealand to AA meetings.) Then there was Mary, who, according to Moira, was my warm-up, an eighty-year-old spelling expert whose act consisted of a large phonics cube that was somehow relevant to teaching the structure of language. Mary had severe flatulence, so whenever she bent over—whether to get into the car or to pick up her beloved cube—she passed