The Naming of Things: On Identity and Disability

I was twelve years old doing homework at the kitchen table, and Greg had already finished. We had tried working at the same time, but between Greg needing our mom to help him with every assignment and her need to check that we were not only finishing but excelling at our work, there was not enough Mom for the two of us.

I was making what my teacher called a spider chart to prepare for our first essay of the year. The center of the spider chart was supposed to be the spider’s body, and in that body we were supposed to write the “big idea” of the essay: a person, real or fictional, who was quirky.

I wrote the word “quirky.” The legs were splayed across the page, and on them I wrote my topic ideas: Homer Simpson from the Simpsons and Stu Pickles from the Rugrats. I looked at my spider; it looked stupid. It looked like a spider I would rather squash than make into an essay.

“What about Greg?” I asked my mom. The idea didn’t come from anywhere — it just happened. One second I was crushing spiders, and the next the spider had become my brother.

“What do you mean ‘What about Greg?’” she asked. “Are you saying that Greg’s quirky? Are you saying that he’s weird?” My mom was a pufferfish — frightening and sharp-looking. I felt small. I felt like I had pushed a button I hadn’t known existed.

“Yeah,” I said. “He is. It’s not a bad thing. He just marches to the beat of his own drummer, you know?”

My mom deflated. “You know, Matt, that’s a really great way of putting it. That sounds like a great idea.” I knew that already, but liked that she thought so too.

I called my essay “My Quirky Brother.” Even though the idea was mine, and the majority of the words were mine, the effort was ours. There was my desire to write about my brother. And my mother’s humility, her tacit acceptance that she had jumped the gun, the thought that maybe there could be people who could see the eccentricities and not think WARNING: DISABLED CHILD. My mother learned the word “quirky.” I learned the word “autism.”

I didn’t tell Greg about the essay even though the essay was about him. Was it embarrassment? Fear? That my brother wouldn’t find it particularly it interesting? Or maybe on some level, I knew it wasn’t really about him. Even though I wrote about how he “marched to the tune of his own drummer” and “taught me to be empathetic,” this is not what I thought about when I stood up and read my essay to the rest of my English class. It felt like I was reclaiming my identity. I knew the word ‘autism’ had power, that even though I wrote my essay about Greg, it was about more than him. It was an idea I could mold and twist in ways I saw fit. No matter how I manipulated this idea, though, Greg would always remain Greg.

By the time I was 14, we no longer shared our mother at the kitchen table. As Greg’s work took longer, my mother trusted me to complete my work on my own. But she still held standards that felt impossible to reach. She was certain that if she pushed me hard enough, I would get into Princeton or Yale. For Greg, she just wanted a college education.

My parents refused to compare us; I could do nothing but.

“Greg has it so much easier than me,” I told my mother one day. “He could get all Cs and you’d be totally fine with it.”

“I could bring you to a hypnotist, you know,” she threatened. “You could switch minds with your brother for a month and see how easy you think it is.” I was old enough to believe the threat was baseless but young enough to doubt my intuition. To even consider living my brother’s life was enough to make me balk. If I could re-live this moment, I would call my mother on her bluff, not to be a smart-ass but to try and answer the question that continues to nag me: Who is my brother?

My brother the quirk. My brother the martyr. My brother the autistic. At the end of my junior year of college the question became more and more urgent. Who is this person I grew up with? What is it like to live inside his head? I began to work on a collection of linked short stories — mini-explorations into the life of a family with an autistic son. For research I read Boy Alone, Karl Taro Greenfeld’s memoir about growing up with a severely autistic brother.

Even though Greg is not severely autistic, and rarely reads as autistic to strangers, I felt a kinship with Greenfeld. While our personalities and situations were vastly different, there were moments of interiority that felt as if they were taken from my own mind (“I always tell them: I don’t know what it feels like to have any other kind of brother.”). Moments that evoked the fears that I had yet to articulate (“I don’t know [my brother]. He is, I suspect, unknowable. Yet he remains the center of my life.”). Moments that reminded me of the unfairness of being told that Gregory and I are equal, that there is no difference between us, and yet there were the constant reminders of how lucky I should consider myself to not be autistic (“How wonderful that must feel. To not have to try or study or observe but to just be and for that to be enough.”).

Before Boy Alone I had not met anyone willing to so candidly discuss their experience as the sibling of an autistic person. I had my parents, and the families of children I worked with through my town’s recreation program, but nobody whose struggles I could identify with.

For my high school graduation my godfather gave me a copy of The Giving Tree and inscribed it with a note of how proud he was of me for being such a strong, courageous, older brother to Greg. It was a kind, entirely sincere gesture, and I knew that nobody would understand how angry this made me. (When I showed an earlier draft of this to my mother, she said I had to emphasize the kindness of the gesture). Gregory was the only kind of brother I knew, and I was the only kind of brother I knew how to be. That is not bravery; that is necessity.

Maybe Greg needed to feel this, too. I tried to point him towards books like John Elder Robison’s Look Me in the Eye: My Life with Aspergers, hoping that, despite his lifelong animosity towards reading, he would find the same kinship I felt with Greenfeld. But after the first chapter he stopped. He just didn’t feel that connection.

Despite this, I insisted that Greg would benefit from seeing other autistic young adults, or even a fictional character like him. And it made sense that if anyone could write a fictional character that talked like Greg, it would be me. I was working on that collection of linked stories about him anyway — why not try writing as him, too?

I knew the way he talked, how he spent time, but even after growing up together I understood little of the way he processed the world around him. I asked him if he would mind keeping a journal for me. He seemed hesitant, unsure of exactly what I was asking for, but he agreed. Two months later, when I was home for a weekend in the summer, my mother proudly gave me the journal entries he wrote and recounted how eager he was to help me. He had messaged me several times asking me for more specifics: What was he supposed to write about? What did I mean by “write about his life?”

I was nervous when I began reading. Who was this person I had been writing about for so long? How would reading this journal change the way I felt about my brother? Would I still be able to call him autistic after reading about his inner life? For so much of my life I had taken on the identity of “sibling of autistic person;” if I couldn’t call Greg autistic, then what would I call myself?

There were four journal entries, none spanning longer than a paragraph. “Today I went to work and then I went to class.” “I had a test today and it was pretty hard but I’m glad it was done.” “I’m excited to go to Lake George next week with my family for vacation.”

I was hoping for something that felt authentic, something less concrete. What did he think about that class he went to after work? Did he think it was pointless? Did he think about how he’d rather be at the pool than taking a biology lab? What does he worry about? What are his dreams? How often does he think about sex? Does he like anyone? Does he like me? What does he think of me, as a person? Do I exist as a person to him or just as an older-brother figure?

Why did I not ask him these questions afterwards? Why did I not ask him to write more, to expound more? I don’t think it was because I was afraid of insulting him; I have edited so many of Gregory’s essays, pushed him to clarify his arguments so many times, that I know exactly how to frame this:

“Thanks so much for these, Greg. These are great, but can you write a few more? Would you mind elaborating on your feelings a bit? Can you tell me the kinds of thoughts you have throughout the day?”

Was I afraid to see what he actually though about, what fantasies he conjured when nobody was looking? Not quite — it was the possibility that I would learn nothing. It was the idea that, just like in any other relationship, learning his innermost thoughts would not change the way I see him: that Gregory was, at his core, my quirky, autistic brother.

“Quirky” stuck. Greg was quirky. The fact that he re-watched three second segments of cartoons over and over again was quirky. His compulsion to never be late for anything was just him being quirky. “My quirky brother” soon became “my quirky son” and “my quirky nephew” and “my quirky cousin.” When my brother turned 12, my mom explained to him the root of this quirkiness.

“Your brain’s wired differently,” she said. “It takes you longer to figure some things out, but if you work really hard you can. The brain is just a bunch of filing cabinets, and you need to look through more of them than we do. It means some good things too, though. You have a great sense of direction and you’re a kind person and you’re fantastic at videogames.”

To say that my brother has a great sense of direction is an understatement. One day, while my mother was driving Greg back from the Allegro School, a preschool designed for young autistic children, she took a wrong turn. She kept making wrong turns until she was helplessly lost in Morris County, New Jersey with her five-year-old autistic son. I don’t know what my brother saw — maybe it was a certain crossroads, or a statue, or even just the way the trees clustered in peoples’ front yards, but it triggered something. A memory, a sequence of places and words and actions that he had relived every weekday, a stream of consecutive images that burst forth from his memory.

“Take a left up at the light,” he barked. And from there more instructions: right here, go straight until you see the McDonalds, left at the Home Depot (or, as Gregory called it, “Home De-pot”). It only took them fifteen minutes to get home. We called him “the human compass” and then later “the human Mapquest.”

My brother understood “human Mapquest” and having “a differently wired brain,” but we should have known better than to assume this understanding would be generalized. I should have known better. Born 18 months apart, he may as well be my twin. We shared the same room, the same teachers, the same soccer coaches, and too often the same clothes. We share a streak of aggression and a fierce competitiveness. Growing up, we would have brutal, physical fights over the stupid small things: who would get to have the middle seat in a car ride, or who got to be Player One when we played videogames.

I knew that he didn’t understand reference. Whatever part of Greg’s mind that was supposed to interpret metaphor as something beyond its literality had never fully developed. One night in one of the many summers we stayed up late playing videogames and watching Disney movies we were too old for (more Country Bears than Toy Story), I asked him if he knew the truth about Santa Claus.

“Yeah!” he said. “Dad is Santa Claus, and did you know that Mom is the Easter Bunny too? It’s so awesome!” Instead of telling Greg that Santa and the Tooth Fairy were imaginary, my mom tried to go the more merciful route: “Well Greg, I just wanted to make sure you understand that Dad and I are really Santa and the Easter Bunny.” I then explained to him that, no, our parents were not actually Santa and the Easter Bunny. They were imaginary; what our mother had said was just a figure of speech.

Was autism just another Santa Claus for my brother? Before he learned how to name his disability, could he have possibly believed that, as our mother told him, our minds really were just made up of file cabinets? No matter how many times you say, “Greg thinks literally,” you inevitably return to a metaphor.

In his junior year of college, my brother confessed to me that he was terrified when he found out about autism. “I thought that I wasn’t going to survive in my journey when I experienced autism,” he said. My brother is most comfortable reciting his emotions in platitudes (Me: “What was it like to work as a camp counselor for children with special needs?” Greg: “I felt that I learned a lot from working with kids that need support, love, and guidance.”), but I had a hard time doubting this fear. Anxiety is finely ingrained within our blood; it is more us than our dreams are.

When I was a senior in high school, my friends and I often talked trash about a girl who became friends with a classmate’s mother. The two of them would get dinner together, shop together, and gossip about boys together. I was disgusted that my classmate could try and replace her own flesh and blood, that she could feel that desire.

I think about this girl whenever I write about Gregory. When I try to pin him on the page I can’t help but feel connected to her. When I sit at my computer, figuring out how to twist and break my memories to fit the confines of my container, I feel like I am trying to replace him. When I was twelve he became the syncopated drummer for my composition class. When I was eighteen he became the nucleus of my life for a college essay. These changes were comfortable. What harm is there in making your brother into a martyr, in turning your parents into saints? I wonder if the people who read my essays feel the same disgust I felt.

I took my first nonfiction writing class when I was 21, and, for a fact-embedded piece, I again wrote about my brother. I wove together the history of autism theories with my vision of Leo Kanner’s experience writing “Autistic Disturbances of Affective Contact,” the first medical paper to define autism. I wrote about how my teenage dream was to go to Brown and become a geneticist. Then I tacked on a piece about my brother. I remember feeling so accomplished, that my writing had matured so much since I the last time I had written about him. The final line came fully formed, three pages before I finished the draft: “Gregory is my Donald Tripplet; people deserve to know that he exists and that he is not just a list of symptoms.”

The critique was rough. My essay was really two different pieces smashed together: one about my brother and one about the history of autism. The prose was too florid. Someone in the class mentioned how they did not see enough of my brother. “You talk about how he is not a list of symptoms, but that’s all you talk about in this piece. I wish you had actually shown us who he is as a person.”

“I just don’t think you like your brother,” my mother said. It was a quarter to 11 at night and I was nursing a hangover. My parents and I were driving home after spending the day, a hot, sunny July day, up at my aunt’s house drinking by her pool. My father and I were stunned.

“No, I’m serious. I just don’t understand the double standard. You want to work with kids with special needs but you can’t stand being around your own brother.” There were forty minutes left in the car ride — forty minutes of arguing, and, eventually, a silence that threatened to collapse from under us.

I had gone to the local fireworks show with some friends from high school and did not invite my brother to come with us, even though I knew he did not have other friends to go with. He was upset. He went by himself. I saw him, but did not call out to him to join us. Nobody would have minded; Greg is kind and earnest, if a bit awkward around others, and he had grown up with us.

But I didn’t want him there. I lived with him, shared a room with him for almost my entire life, and I wanted space. I knew how lonely he was, how much it would have meant for him to spend time with my friends and me, but convinced myself that I could treat him as one of two things: my brother or an autistic young man. I would rather see him as a peer than as a charity case. What my mother saw as cruelty, I saw as a kindness.

She was not entirely wrong. I did like my brother, but not as a friend. I did like my brother, but only parts of him: the parts of him that giggled but wouldn’t tell us why, that would get flustered when I antagonized him, that would get too competitive when we played Mario Party.

But how could I ever truly like him if I insisted on defining him as exclusively “brother” or “autistic?” How could I truly treat him as a peer if I had to excise an aspect of his identity is in order to do so?

When I read past essays I’ve written about him, it is impossible to ignore that the Gregory I wrote about is a caricature, a conflation of symptoms and exaggerated pity. I cringe at the realization that I was not my brother’s advocate, as I so claimed. In these essays, I was nothing less than exploitative of his disability, seeking out the cheap emotional beats that made me seem more mature and talented than I actually was.

The Gregory I wrote about is a caricature, a conflation of symptoms and exaggerated pity.

I hope that I have matured, that I have learned to not use my brother’s disability as a garish pedestal upon which to stand. I have revisited the linked short stories I started in college. A year later, all I can see is a gimmick: a devaluation of my brother’s life, of all of my family’s lives, for the sake of standing out from other young fiction writers. I read one story, and I see a young man who feels so much anger at his family that he fails to see his own shortcomings. I read another, and I see a revenge fantasy on behalf of my brother. The Greg in these stories is less a character than a thematic prop.

My brother, obviously, did not need this. What my brother needed, and still needs, is to discover a way to navigate a world that will not hesitate to reduce him to a word. This past year he graduated cum laude from a college he loved. While there, he joined a fraternity in which he felt appreciated and liked. It’s wonderful, without a doubt, but along with this wonder came the end of his time as a student. There is no more homework that our mother can double-check.

Sometimes I was still awake when Gregory left for work. We both still lived at home, but we no longer shared the same room. I rarely knew if he was awake or asleep or even home, but I could expect to hear his car scraping the bottom of the driveway on his way to work.

He lifeguarded at our community center’s pool, and twice a week he worked the opening shift, 6am to 10:30am. It paid poorly, and he was the oldest lifeguard there. He covered any extra shift that was asked of him and was always on time, but still the owner threatened to fire Greg after he was unable to persuade a cantankerous swimmer to follow his instructions. He came home from that shift rattled, left the anger to our parents and me. We had all known his job could not last for too long but kept putting off the full-time job search. None of us missed the kitchen table routine, the hours of researching and helping him study and looking over his work and checking in to make sure he did not miss any of his deadlines, and we all dreaded its eventual return. This time, however, there would be no flashcards to memorize and no essay to craft. Gregory needed a resume, and he needed to learn how to interview.

I was almost two years out of college and still underemployed — an unpaid intern who scraped together freelance and part-time work and paid off his private-school loans with borrowed money. Despite this, I was the one my parents turn to when faced with the challenge of Greg’s employment.

“Do you think you can write Greg’s resume and cover letter?” my mother asked the night Greg almost got fired. I looked at her bug-eyed.

“You’re kidding, right?”

“Well, it would be a huge help.” After almost two decades of working with my brother, from spending hours allaying his meltdowns as a toddler to quizzing him before college exams, my mother was tired. “I know that you’re applying for jobs too, but you’d do such a better job of it than I would.”

“I can do the resume, but I won’t do the cover letter.” I conceded. “But this is really unfair of you to ask.” She knew that, of course, but I wanted her to feel it.

The resume was easy — I used my own as a template and just filled in the blanks. But where I could write about my accomplishments conducting independent research and holding leadership positions in clubs and groups, Greg had only his fraternity (which had only officially formed in his junior year), a few volunteer projects with his church parish, and the various lifeguarding jobs he held throughout college. His resume was a sad husk, more blank space than ink; it did not look like my brother.

My mother agreed. We decided it would be best to ask my aunt, a former marketing executive, for help. She had critiqued my resume and coached me for interviews when I first started hunting for internships, and she would be back from a consulting job in the Philippines soon. I was not expected to help anymore; Jean would be enough.

The day Jean came, I joined her and my mother for lunch at the kitchen table. I had not expected to help, but when Greg came up to the table, I did not leave. Jean, my mother, and Greg rehashed the past four years while I wrote. I had forgotten that Gregory was originally an education major, had completed internships and teaching practicums before realizing he would not be able to pass the Praxis and switched majors, that he had been a guest speaker for a conference on disability at a local university. I took two pages of notes in the hour and a half they talked.

While Jean and my mother taught Greg how to interview, I formed the notes into a cohesive document: cutting phrases, playing with kerning, and spinning duties into accomplishments. By the end, Gregory’s resume looked largely like mine, margins blown out and type spaced just widely enough to not look cluttered. There was no comparing this to the first draft — they looked like they belonged to two different people: one to the idea of my brother, and the other to Gregory.

This resume, a narrative unto itself, was the best essay of Gregory I have ever written. Tracing his employment, the fraternity, the internships — it is the only story I have ever truly told about my brother. In every other essay I’ve written, Gregory is not a person but an idea — the event that changed my family, the reason I am the way I am, the response to a prompt. I have been writing my own story and naming it after my brother, taking his history and transposing it upon my own. In trying to construct Gregory’s identity on the page, I have ignored the fact that I will never understand someone as intuitively as I do my brother. We have shared bathrooms, teachers, and hotel beds; I have woken up to his ragged snoring. Insisting to treat Gregory as either autistic or my brother is rejecting the obvious truth; he is both. He is my quirky brother.