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The Top 5 Longreads of the Week

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This week, we’re sharing stories from Nicole Lewis, Omayra Issa and Ify Chiwetelu, Patricia McCormick, Tobias Buck, and ‘Cúagilákv.

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1. How We Survived Covid-19 in Prison

Nicole Lewis | The Marshall Project | April 22, 2021 | 3,610 words

“At the start of the pandemic, we asked four incarcerated people to chronicle daily life with the coronavirus.” Bruce Bryant, Jennifer Graves, James Ellis, and Christopher Walker “reveal what they witnessed and how they coped with the chaos, fear, isolation and deaths.”

2. Black on the Prairies

Omayra Issa, Ify Chiwetelu | CBC News | April 25, 2021

A multimedia, interactive exploration of Black life in on the prairies of Manitoba, Saskatchewan, and Alberta.

3. The Girl in the Kent State Photo

Patricia McCormick | The Washington Post Magazine | April 19, 2021 | 4,535 words

“I believe that one of our most important roles as teachers is to provide authentic opportunities for young people to heal.”

4. Herman and the Serpent

Tobias Buck | North & South | April 13, 2021 | 4,100 words

“How a retired diplomat in Wellington brought a notorious murderer to justice.”

5. Thriving Together: Salmon, Berries, and People

‘Cúagilákv | Hakai Magazine | April 27, 2021 | 2,000 words

“Western science is a curious little sister on this coast, mapping ideas and observations in spaces where Indigenous science has been foundational to kinship-building and ecological balance for millennia.”

Thriving Together: Salmon, Berries, and People

Longreads Pick

“Western science is a curious little sister on this coast, mapping ideas and observations in spaces where Indigenous science has been foundational to kinship-building and ecological balance for millennia.”

Source: Hakai Magazine
Published: Apr 27, 2021
Length: 8 minutes (2,000 words)

You Robbie, You Baka

Illustration by Zoë van Dijk

Brian Trapp| Longreads | April 2021 | 26 minutes (7,917 words)

 

At the request of the families involved, some names in this essay have been changed to protect privacy. It includes depictions of bullying and cruelty and contains language that some people may find upsetting.

***

When I first saw him, I thought for a second that it was my twin brother sitting in his wheelchair. It was the beginning of sixth grade, and I was on the dirty gym floor trying not to hyperventilate. I had just moved from a small Catholic school in Baltimore with a class of 25 gentle Christians to a large public school outside Cleveland, and our whole class was crammed into the gym for orientation. 

I spent the summer of 1994 studying MTV with my older sister, taking precise notes on how to be cool, and came that first day armed with a binder covered in band names written in black Sharpie: Mazzy Star, Red Hot Chili Peppers, Belly, Nirvana, The Crash Test Dummies. Never mind that I was thigh-chafingly fat and had boats for feet, wore surfing shirts hundreds of miles from any kind of ocean, and covered my bedroom in puppy centerfolds cut out from Dog Fancy magazine — I knew the names of cool bands, as if I could just walk up to a kid with a skateboard, whisper “Green Day,” and get invited to his house. 

Then, across the gym, I saw him sitting up high in his wheelchair, his wrists curved down like a praying mantis, his body stiff with cerebral palsy. He was skinny with choppy brown hair, his mouth pinched into a nervous grimace with an occasional smile. Just like my twin.

I’d hoped in the move that Danny and I could finally go to the same school, that I could give him wheelies down the halls, slip him high fives in between classes, use his dimpled smile to attract girls, and listen to him laugh when someone got in trouble. We could ride the bus together and play our call-and-response, where my brother heckled me with his version of my name and I gave it right back: “I-an! Danny! I-an! Danny!” I knew twins sometimes switched places and went to each other’s classes, waiting to see who’d notice the difference. With his severe cerebral palsy and bone-thin frame, no one would ever mistake Danny for me, though it would’ve been fun to try. I at least wanted my twin to be in the same building instead of an absence I always had to explain. But Danny — who in addition to CP had intellectual disabilities, was legally blind, and could only say 12 words — was deemed too disabled to be accommodated at my school, and was bused to a larger special ed program 30 minutes away.

So perhaps, in the gym, I was missing my twin and shocked to see this stranger where I wanted my brother to be. His name was Robbie Baka. I introduced myself and said “hi” to him a few times in the halls. Maybe I didn’t need the bands. Maybe, through my brother, I had found my first friend.

***

Initially, I thought Robbie was like my brother but upgraded. While their bodies shared a similar spastic choreography, Robbie could fully control his head, which he used to nimbly toggle his power chair around corners and down ramps, dodging classmates and desks as he navigated the middle school. While my brother was limited to “eh” for “yes,” “eh-eh” for “no,” and several people’s names, Robbie was fully verbal, and spoke with a squeaky voice grounded in his sinuses. My brother was almost all vowels, but Robbie could fit his mouth around every consonant, every “ch,” “sh,” “f.” My brother revealed his intelligence through the jokes he would laugh at or a well-timed “eh-eh!” but couldn’t, for instance, read a sentence or solve a math problem. Meanwhile, Robbie was in mainstream classes — he needed his aide to write and take notes, but he completed the same book reports and took the same tests as I did.

But I quickly learned Robbie was not cool. In the hallways, he sang Disney songs at the top of his lungs, belting out in his gratingly high voice “A Whole New World” from Aladdin. He lapsed into revelry with The Lion King’s “Hakuna Matata.” If he got started on The Little Mermaid’s “Under the Sea,” he would not stop. Then he’d somehow raise that voice an octave higher, and imitate his hero: “Whoo-hoo! Hey guys. It’s me, Mickey Mouse! Whoo-hoo!” If all that wasn’t awful enough, he was also a narc. He told on kids for saying bad words and throwing pencils into the ceiling. In his annoying nasal voice, he’d say, “Mrs. Schoffer, Nate threw a pencil!” Or he’d whisper to his aide, who passed up the intel to the teacher, a game of narc telephone. In the hallways, he drove recklessly, and would run over people’s feet without so much as a “sorry.” In choir, he shout-sang every song, ruining whatever harmony we had. And in history class, he’d derail the lesson to ask stupid questions: “Are there a lot of forests in China?” Sometimes his aide would raise her hand, and he wouldn’t even ask a question, saying, “Oh. Um. I forgot.” Only later did I realize that he was playing the heel, that he knew people like me thought he was annoying, and he wanted to annoy us even more. He wanted to run over our feet.

Robbie was one of the few physically diverse students at our school. In our grade of 130, there was one Egyptian, one Asian, and two Hispanics. Our only Black kid was adopted and swore he was Sicilian. Otherwise, it was an able-bodied white-out. Did I like thinking that the only visibly disabled kid in my school was insufferable? No. I wanted him to be as charming and funny as my brother but with all the words, to be one of the cool and witty crips you see on television nowadays: Speechless’ J.J., Special’s Ryan, or even that wheezy best friend from Malcolm in the Middle. But back then, they were not on television, and every time Robbie opened his mouth, I gritted my teeth.

Part of me hated Robbie for his abilities. What my brother could do with those functioning eyes, that coordinated mouth, that agile head. I rarely wished I had a “normal” brother. What I wanted were more opportunities for my actual brother to express himself: to drive his wheelchair where he wanted, to say, “Hey asshole. Shut up.” If Danny were like Robbie, he would just be more of himself. But what did Robbie do with his abilities? He was a rolling advertisement for Walt Disney. 

And part of me hated Robbie because I was terrified about my own social status. I barely talked that first year. A girl in my class nicknamed me “the silent dude.” If I was his friend, I would have to eat lunch with him and the kid who reeked, the boy who talked to himself and still played with Power Rangers, or the girl who got bit in the face by a horse. He was a dark star of unpopularity, drawing losers into his orbit. Contact with Robbie risked revealing the real me: the Brian with puppy centerfolds.

But no matter how much I hated Robbie, the cool kids hated him even more. Mostly, they ignored him, as if to say, Are you still here? Though sometimes the boys mocked him behind his back, strangling their vocal cords into high-pitched imitations and chopping their hands spastically against their chests. When he was alone on the bus, they bounced erasers and spitballs off his face. They wondered aloud whether, in addition to helping him urinate, his aide also helped him whack off.

At my Catholic grade school, when my friend said “retard,” I told him to stop. I told my mother, who told his mother, and then my friend called me sobbing to apologize. But here, “retard” was everywhere: “Why are you such a retard?” “God, are you retarded?” “You retarded retard.” “You el-retardo.” My generation loved the word “retarded,” using it as a catch-all for anything bad. It was the bottom. It was the worst thing you could be. And it was so fun to say. Maybe we liked how it rolled off the tongue: Curve back and then three quick taps on the roof of your mouth —  re-tar-ded. You could cut it up, remix it: Tarded. Tard. Re-re. Fuck-tard. At my new school, they said it so much that I got tired. I let it happen. I was the silent dude.

But here, “retard” was also Robbie. They made it personal. They said to each other: “You stupid Robbie. You’re such a fucking Baka.” In a twist of the penis game, they’d have competitions to see who could yell “Baka!” the loudest in a crowded room. “Baka! Robbie Baka!!!” In the end, I was relieved my brother wasn’t here. I didn’t want to find out what they’d do with his name. 

“Stop,” I said. “Don’t.” I defended Robbie from the worst of the bullying, but I would not beat up Jim for a thrown eraser or punch Phil for saying “you fucking Baka” every other sentence. I would not fight for him. Because even I found him annoying. If he were my brother, I reasoned, I would make them stop. If he were my brother, I would kill these kids. But he was not my brother.

***

In seventh grade, I brought a Sunny Delight bottle to lunch half-filled with vodka and finally made some friends. They were into cool bands, were in cool bands. We took guitar lessons together. We shared CDs. We smoked cigarettes. We smoked pot cut with pine needles. We slept over at each other’s houses and skimmed our parents’ hard liquor into foul brown tinctures we sipped from Schweppes bottles. 

If he were my brother, I reasoned, I would make them stop. If he were my brother, I would kill these kids. But he was not my brother.

They did not make fun of Robbie. They just felt bad for him. When they met my brother, I was terrified about what they’d think. Would they concentrate on his crossed eyes, his tight and wispy arms, his bony knees, his pastel dog-paw bib, the cavernous gape of his mouth, the string of drool rappelling down his chin? Would they think: Retard. Re-tar-ded. Or would they wait to discover the person in there who laughed when you burped or said the word “bathroom,” who flirted with their mothers, who heckled me with his version of my name: “I-an!”

They were nervous. “Hi,” they said. “Does he shake hands?” They picked up his stiff fist as if it would break. 

My brother, shy at first, flashed them a smile. They smiled back. “Yeah,” they said, breathy with relief. “What’s up, Danny?”

When we were alone in the basement, they asked me questions: What happened to him? Will he ever get better? Can he not talk at all? How much does he understand? How does he go to the bathroom? Do you have to change his diapers? 

With our pool table and my mother’s apple cake, my house became the preferred sleepover destination, and their curiosity developed into acceptance. I’d carry my brother down into the basement, where he’d lie on the couch and listen to us make fun of each other. When they’d catch him laughing, they’d say, “See, even Danny thinks you’re a little bitch.” 

They’d use him to rib me: “Danny, how can you stand your little brother?” and Danny would respond, “I-an!” like I have no idea.

“Oh shit,” they’d say. “He’s making fun of you.” 

We’d play with his adaptive equipment. We took turns torturing each other in his electric hospital bed, jacking up both head and feet, folding our victims into pretzels. We put each other in his Hoyer lift, the small portable crane my parents used to lift him, which held us six feet aloft in its netting and made us vulnerable to kidney shots from below. We convinced one of our friends that Danny’s Hoyer could understand English and would move up for “yes” and down for “no,” hiding the switch behind our backs. The Hoyer moved up and agreed. It thought our friend was a “fag.” When one of us bragged that he could escape from anything, we duct-taped him to Danny’s wheelchair and parked Houdini screaming in the middle of the road. Through it all, Danny smiled and laughed.

They did not treat him like Robbie. They said, “What’s up, Danny? You player. You pimp. You ladies’ man. Dan, you’re the man. Dan the man.” I felt proud to be his twin brother.


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***

While my friends seemed to accept Danny, my other classmates still called each other “retard” and “Baka.” I pretended it didn’t bother me but I held so much anger inside my body. I started taking kung fu lessons. I replaced the puppy centerfolds with pictures of bald and fierce Shaolin monks crouched with spears. I bought a heavy bag and punched the skin off my knuckles. In kung fu class, my classmates said, “It’s like you want to kill somebody.”

They were right. While training after school in my basement, this was my recurrent fantasy: I am pushing my brother at a high school football game, and we walk where the middle schoolers cluster and gossip below the bleachers. I push my brother past the boys who torment Robbie and they say the usual: “You fucking Baka.” But this time, they say it to my brother. 

Cue the violins. “What did you say?” I drawl, readying my fighting stance, tightening my grip on Danny’s wheelchair handles. I’m a pudgy David Carradine. “Say it again,” I say. “See what happens.” 

They surround us, and they say it: “You retards. You fucking Bakas.”

Techno music. My opening salvo: Launch a flying double-side kick from Danny’s wheelchair handles, followed by tipping his chair back for a “footrest of fury.” Then I step out from behind Danny’s wheelchair to snap-kick their knees, to upper-cut their ribs, to crescent-kick their temples, to dragon strike their faces (palm smashing nose into the brain, fingers raking eyes).

When they’re rolling on the ground, writhing in pain, when they know they’ve lost, the last one standing lunges for my brother, and I stop him with a flying kick to the solar plexus and grind my foot into the back of his neck until I hear his bones click. If they survive, they won’t even be mainstreamed like Robbie. They’ll be bused out with my brother, and somewhere in the back of their brain-damaged minds, they’ll be sorry. 

Then I’d come upstairs covered in sweat and chug a glass of milk, my real brother safe in his wheelchair with no idea how many classmates I’d just murdered for him.

***

In eighth grade, my friends and I started a band, with me as the lead singer. My voice was too high and I got kicked out. No hard feelings. We traded copies of Penthouse and porno tapes, wishing that actual girls would let us touch them. We smoked better pot without pine needles. We got older siblings to buy us beer with fake IDs. We snorted Ritalin in the library. We wore hemp necklaces and cargo shorts. We played hacky sack in the middle of town, where we spat and smoked and slouched. We participated in zero extracurricular activities and declared so many things “gay.” When we grew tired of being cool, we escaped into my basement and pretended to be Jedi knights with pool-stick lightsabers.

When my friends slept over on the weekends, they marveled at Danny’s new augmentative communication device, which looked like a chunky proto-iPad. A small speaker on his headrest whispered phrases into his ear and he chose his option by clicking a switch with his wrist. The computer announced in a scary robot voice: “My bro-ther Bri-an is an id-i-ot.” My friends cheered.

But sometimes at school, my violence would squeak out. Once, in the gym, I watched sixth graders pour through the doorway as Robbie and his aide waited for someone to let them outside for recess. “Excuse us,” the aide said. “Please.” No one would stop. 

“Wait,” I said. “Wait!” And still they streamed through. Finally, I stepped into the doorway and hockey-checked a boy onto the ground. The line halted. He stared up at me with tears welling in his eyes. “Why?” he asked. “Asshole!”

Robbie’s aide shook her head. “You didn’t have to do that,” she said.

Yes, I did.

One day at lunch, at the beginning of ninth grade, my friends stared across the cafeteria at Robbie eating Mexican pizza. They watched as Robbie’s aide fed him cut-up bites with a fork, Robbie’s mouth clumsily masticating as the pizza fell onto the napkin stuffed into his shirt. They watched Robbie as he coughed, as his face bloomed red and he struggled to breathe, as he took long swigs from his giant water bottle. 

“Ugh,” one of them said. “Can you imagine what it’s like to be Robbie?”

“I know. You can’t even hold your dick to piss.”

“To never whack off?” said another. “Or touch a girl?”

I got quiet and still. Another friend shook his head: “Dude, I can’t imagine.”

“Someone has to take you to the bathroom? You can’t even wipe your own ass. I mean, look at her feeding him. Fuck.”

“Yeah, I can’t imagine,” said another friend. They all shook their heads, united in this not imagining. My fist clenched. My stomach knotted. But I was silent.

“If I was like that,” my friend said, “I’d kill myself. I’d blow my fucking brains out.”

They all shook their heads in agreement. It was only now that I slammed my fist on the table. “Stop,” I said. “Shut up.”

I stood. “You say that about him, you say that about my brother.”

“Come on,” they said. “We’re not talking about Danny. Don’t be so dramatic.”

These boys didn’t yell “Robbie” in a crowded room. They were my best friends, kids who’d slept over my house every other weekend, who called my twin “Dan the man” and made him smile by whispering in his ear that his brother was a “pussy.” They stayed for dinner and watched my mother feed my brother the exact same way Robbie’s aide was feeding him now, and when my brother coughed food into their faces, they’d yell, “Dan, you got me!” while my brother laughed. They’d watched with curiosity as I changed his diaper and fed him ground-up pills suspended in a cloud of apple sauce. They’d sat in the soft foam of his wheelchair, tried it out on their own bodies, and competed to see who could do the longest wheelie. I thought these were moments of play, of joy, but now I knew what they were really thinking: If I were like you, I’d kill myself.

Standing there, I wanted to flip over their lunch trays and bash in their heads. I wanted to punch their throats, rake their eyes, break their necks. But most of all, I wanted to run away and cry in the bathroom, to find new friends who wouldn’t say such awful things, who wouldn’t even imagine them.

“You are,” I choked out. “You’re talking about my brother.”

Their faces softened. They looked down into the tortured landscapes of their Mexican pizzas. “Alright,” they said. “Sorry. Now sit down.”

What did I think would happen if I walked away? If I went to sit with Robbie? What kind of adolescent hell did I imagine for myself? It is so difficult at that age to picture yourself cast out from the group. You cling so desperately to that “we” no matter what it costs. All I knew was that I didn’t want to be back in that silent year, that lonely and singular “I” on that dirty gym floor, awkward and alone with my binder of cool bands.

So I sat down. I wasn’t dramatic. We moved on. The next time someone said “retard,” I didn’t even flinch. I said it myself.

You retard. You Robbie. You Baka. You brother. You twin.

***

The rest of high school was both better and worse for Robbie. His bullies grew less cruel or more sophisticated in their cruelty: They mostly just ignored him. But if kids no longer yelled “Baka!” or threw spitballs at his head, he also grew more isolated. His middle school friends matriculated to the more diversified subcultures of high school: the goths, the freaks, the math nerds. His parents stopped throwing him birthday parties after freshman year when only three kids showed up. Sometimes the only person sitting with Robbie at lunch was his aide. And Robbie struggled with the more advanced classes and needed increased accommodations, doing subjects like math entirely in the resource room with the special ed teacher. While no genius myself, I was on the pre-college track. We rarely had a class together.

He still loved to sing, but had trouble with the increased rigor of high school choir. He struggled to learn and pronounce the songs sung in Latin and Italian, though when they started to practice “Candle on the Water” from Disney’s Pete’s Dragon, he already knew every word by heart. The more serious singers resented Robbie for his off-key voice, how he seemed to shout-squawk the lyrics, how in their beautiful wall of sound there was always the crack of his voice. He held them back. When they traveled to state-wide competitions, they were thankful that Robbie stayed home.

They’d sat in the soft foam of his wheelchair, tried it out on their own bodies, and competed to see who could do the longest wheelie. I thought these were moments of play, of joy, but now I knew what they were really thinking: If I were like you, I’d kill myself.

One class I did have with him was 11th-grade drama, where I saw a different side of Robbie. There was a lip-synching assignment, which Robbie refused to fake. He sang “Daydream Believer” by The Monkees, his body exuberant as he spun and writhed around the stage to the beat. For the monologue assignment, he inhabited Hamlet in the famous “To Be or Not To Be” soliloquy, which he performed in a low strangled rasp that gave the words a doomed weight: “Nymph, in thy orisons, be all my sins remembered … .” During improv scenes, he couldn’t stop laughing. He seemed so happy to be performing. On stage, he was comfortable with himself in a way that I envied. Didn’t he know what people might think?

He once told a friend that he loved choir and theater because he liked to express himself; he liked pretending to be someone else for a while. Sure. But I suspect Robbie also liked inviting the audience’s eyes onto his body. When so many people either ignored him or stared at him against his will, up on stage he sanctioned that stare. Elevated and under lights, he was impossible to ignore. He invited us to look and listen, translating the characters into his own choreography. In the able-bodied white-out of our small town, here was his disabled body inhabiting our heroes. Here was the song in his mouth, no matter how much he mangled it, and no, mean girl, he would not shut up.

***

Our senior year, I got my wish. My twin brother finally came to school with me. For the past three years, he’d attended Rosemary Center, a specialized school in Cleveland for severely disabled students, but his teachers worried he wasn’t getting enough opportunities to work on his social skills. So for the first two periods of the day, he’d come to my high school for commons and choir, and then they’d bus him back to Rosemary Center in time for lunch. 

I developed spidey-sense. When he was in the building and I wasn’t with him, I tingled. I was a tuning fork for danger. I wondered: As his aide pushed him through the hallway, would the high schoolers whisper: Retard. Re-tar-ded. Would they imitate his moan? Would they chop their hands against their chests? Would they call each other, “You Danny. You fucking Trapp”? Would they take one look at him and think: If I were like you, I’d kill myself. I knew what my classmates had said about Robbie, and how easily their words could ricochet off his body and onto my brother’s, though I don’t think my brother threatened them the way Robbie did. Robbie was too close to normal — he dared to occupy their same space.

The tingle lessened when Danny was with me in commons, the free period in the cafeteria dedicated to socializing and homework. Robbie was also there but mostly sat in the front of the room, parked with his aide who loved to gossip with other teachers. He would always cheerfully greet my brother: “Hello, Mister Trapp. How are you this morning?” He was so nice and upbeat. He spouted inspirational quotes: “You can do it if you try!” At age 18, he still loved Disney, singing The Lion King songs and imitating Mickey Mouse, if a little less often. He told the kind of jokes found on popsicle sticks. I no longer thought Robbie was annoying. He just seemed immature.

We’d talk for a moment. My brother must have known Robbie was like him; he must’ve heard the spastic warble of his voice, saw with his limited vision the blurry outline of Robbie’s wheelchair. And Danny was the only student in a wheelchair Robbie would see all day. What would’ve happened if I’d let my brother linger? Would Robbie have become his friend? Maybe my brother would’ve liked Robbie’s popsicle stick jokes. Maybe the jokes were just an act, Robbie’s warm-up before he got to the dirtier ones, which Danny would’ve certainly liked. Maybe Danny would’ve called him “Eddie,” the name he gave to all his good male friends.

I didn’t give them a chance. Instead, I pushed Danny past him, into the senior lounge where we’d hang out with my friends in a carpeted corner with couches. Danny brought his Dynavox, his upgraded augmentative communication device. Like the old one, it scanned pre-programmed options across a plastic screen, but when Danny clicked, instead of the scary robot voice, it was me. Technology had improved so much that I could record his options into his computer, giving him my voice.

We asked, “Where’s the party at?”

We sang blues lyrics: “I want one bourbon, one scotch, and one beer.” 

We said, “Shit.”

My classmates gathered around, astonished at my foul-mouthed voice coming from his machine, my brother smiling from his wheelchair with his wrist cocked and ready to click another. 

From the computer, we said, “What’s up, bitches?” 

We said, “Hey girl, can I get your number?” 

We said, “Hey Thompson, you’re a fuck-face.” 

They howled with laughter. Even Ben Stanley, who had loved yelling “Baka” in a crowded room four years before, smiled at Danny. “That’s so bomb,” he said to my brother, and then to me: “You are such a badass.”

“Me?” I asked. “Why? My brother said it.”

“Right,” he said and winked.

But one day we got too close to Robbie and his aide, and my brother clicked, “Steve Cooper sucks balls.” 

Robbie rocked with laughter and said, “Mister Trapp, did you just say what I think you said?”

His aide shook her head. “Come on,” she said to me. “That’s not appropriate.”

“What?” I said. “Danny said it.”

She smiled at my gambit. “I see what you’re doing there.”

My brother laughed, knowing we were getting away with something. We were in trouble at school together like true twins.

But eventually, Danny’s speech therapist discovered our page, and we were busted. Our mother made us erase the most explicit options. From then on, she would monitor my additions. A year later, they erased me completely.

At 17, I had literally given my brother a voice, imagining what he would want to say. I knew my brother mostly through translation. Read his body language, listen to the tone of his “I-an,” analyze the context, and guess what he was thinking as “eh” or “eh-eh” options: “Do you want a milkshake? Are you mad at me? Are you sick of this song? Eh or eh-eh?” Through his Dynavox, I could finally lay down the tracks of his personality, and all he had to do was click himself into existence. 

And what did I do with this awesome power? I made Danny into a crude, potty-mouthed cartoon of a teenager, a mirror of my own ID. I programmed his computer to say “bitch” and “fag” without thinking about their relationship to the word “retard.” I’m not even sure my brother always knew what he was saying through the machine, though he certainly enjoyed his audience’s reactions. 

I knew what my classmates had said about Robbie, and how easily their words could ricochet off his body and onto my brother’s, though I don’t think my brother threatened them the way Robbie did. Robbie was too close to normal — he dared to occupy their same space.

For years, I’ve regretted that I treated giving my twin brother a voice as just another joke. But now I see what I did as a reaction to Robbie. I wanted Danny to be a counterbalance against Robbie’s cheerful Pollyanna personality, his squeaky-clean Disney songs, and his Mickey Mouse impressions. I wanted Danny to be funny and subversive. I wanted him to shock those who would pity him. I wanted my classmates to hear a disabled person say “fuck” and “shit” and “shut up, asshole.” I wanted him to make fun of them. And no matter what Danny really wanted to say, he obliged me. He clicked my version of himself out into the world.

In the end, we played the twin trick. We traded places and waited for them to notice. But to this day, I’m not quite sure if they mistook me for him or him for me.

And yet, despite my best efforts, I couldn’t keep Robbie and Danny apart. After commons, Danny joined Robbie in choir without me, adding his moans to Robbie’s squawks. Together they sang a duet against that beautiful wall of sound. 

***

After we graduated, I lost track of Robbie. I assumed he’d follow the path of most people at our high school: off to college, someplace like Wright State, an accessible campus with ramps and lifts, elevators and attendants where Ohio funneled its disabled students. I expected him to at least continue down the mainstream, for him to find gainful employment someplace with that agile head and coordinated mouth, where his coworkers would enjoy his cheerful presence but secretly wish he’d cool it with the Mickey Mouse impressions. I expected him to have a very different future than my brother, who aged out of the school system and moved on to a day program for people with disabilities at United Cerebral Palsy (UCP) in downtown Cleveland. 

On Christmas break my senior year of college, I went to UCP to visit my brother. In the workroom, among the line of people in wheelchairs, there was Robbie. He was still skinny but now had a buzz cut and stubble on his chin. “Well, hello there, Mr. Trapp!” His body seized in excitement, his arms clenching down. His voice was still grounded in his sinuses but it seemed a bit lower. He had become a man, just as I had. On a long white table were scraps of wood, plastic boxes with nails, screws, and containers of glue. There was a stack of square boards, each with a hole in the middle. They were packaging boxes for birdhouses. 

My mother had mentioned that Robbie was at UCP with my brother, that they actually rode together on the bus, but it was hard to believe. Wasn’t there something more he could do? They were both part of UCP’s sheltered workshop. They did “piece-work,” an absurd parody of work. Instead of earning a set wage, workers are paid “by the piece,” a salary commensurate with their productivity when compared to a “normal worker.” My brother, for instance, would click a hand switch that activated a paper shredder. At the end of the month, they’d mail him a check for 45 cents — negative 90 cents when you factor in the cost of postage and mileage for driving to the bank to cash the check. My mother asked UCP, “Can’t you just keep it?” They could not. 

Certainly, Robbie could make a better living somewhere in the community. Certainly, he could make minimum wage. He had been in the same classes as I was. What did he learn — why endure all the mocking and isolation — if he was just going to end up in the same place as my brother? Surely our high school had prepared Robbie for a different kind of life.

No, my mother said. Robbie had significant learning disabilities. He had health problems — asthma and gastrological issues — so here he was packaging birdhouses with my brother.

Robbie said he liked it here. “They treat me pretty good. Everyone is super nice.”

“I wouldn’t go that far, Robbie Rob!” someone else said from his wheelchair, and they all laughed.

Robbie squealed and said, “Don’t start!” He turned back to me. “And your brother has become a good friend.”

“That’s great, man,” I said. “I’m glad you’re doing well, Rob.” I shook his hand and went to the next room to visit Danny.

***

That spring, to save money, UCP contracted with a cheaper bus company. The bus was late. The bus broke down on the highway. The new bus driver barely talked to Danny or Robbie. A mouth breather, my mother said. He often called in sick, and then they’d send a substitute driver who breathed even more from his mouth. When the bus got a hole in its roof, they didn’t fix it. Once, when it was raining, my mother opened the door of the bus to find Robbie with a tarp draped over his head like he was a piece of furniture. Robbie was good-natured about it, but my mother complained: “You’ve got to be kidding me. Here’s a kid with health problems and you put a tarp over him?” They fixed the bus but not the drivers.

I wanted my classmates to hear a disabled person say “fuck” and “shit” and “shut up, asshole.” I wanted him to make fun of them. And no matter what Danny really wanted to say, he obliged me. He clicked my version of himself out into the world.

I was three hours away on the other side of the state, in my last term of college. If I felt the twin tingle, if I sensed my brother was in danger that afternoon, I mistook it for an overdose of caffeine.

The bus driver pulled into the UCP parking lot to take my brother and Robbie home. I know almost nothing about this man, just what my mother told me: that he was skinny and quiet and in his forties. I know he was polite to her but wouldn’t talk to my brother. I know he worked for a company that paid him the least it possibly could. 

When I imagine him that day, I see him drive into the UCP parking lot, past the brick columns at the front of the building. He’s wearing the bus company polo shirt, the insignia that his friends make fun of at the bar after his shifts, before his shifts. His life has not gone the way he wanted. Like all of us, he was once a child and briefly beautiful but now finds himself driving this bus, making chicken scratch working for the only company that would hire him, so bored with loading the cripples on-and-off, on-and-off, while their mothers eye him suspiciously from the lawns of their nice houses. Maybe on his good days, he makes the best of it: He has a picture of his favorite niece dangling from the rearview mirror; he blasts Fleetwood Mac from the blown-out speakers and taps out beats on the steering wheel; he sometimes turns to classical and practices deep breathing.

But today is not a good day. How much does he drink before he picks them up? He gets blitzed in the neighborhood on his buddy’s porch, passing a bottle back and forth as the bus idles on the curb. Or he drinks in a corner bar, trading stories and shots of whiskey and cheap tall-boys. Wherever he is, he stands up and is drunker than he meant to get but cannot be late again. Maybe he’s battled addiction his whole life and cannot have just one even though he’d like to be a responsible custodian of these vulnerable people. Or maybe he thinks: I don’t have to be sober for this. Look who I’m driving? If we get in an accident, it would be a mercy. If I was like that, I’d … .

He stops the bus in front of the one in the power chair, who is running his mouth, as usual, talking to the other one, who stares blankly into space. They have that pretty aide behind them. He puts the bus in park. As he makes his way to the back, the aide opens the side door, and he stares at her through the metal grate of the lift platform. He feels like he’s in a cage. The hydraulic motor whirs as the platform lowers down perpendicular to his feet. No more hiding. He steadies himself. She won’t notice. “How you doing, sweet thing?” he asks. He has never called her that before. Too far? Or not far enough? She glares at him and pretends not to hear. “Damn. No offense,” he says and laughs. 

The platform lowers down to the blacktop, its lip curling flat, and the boy with the big head and the powerchair loads first, backing himself onto the platform. Robbie Rob, they call him. The aide buckles the belt, and clicks the switch to raise him to the bus floor. He shoves the chair into its space, fetches the Q-tie-downs, and straps him in. God, he hopes the kid doesn’t start singing those Disney songs. It’s too much for a man to listen to for 35 minutes. The kid continues talking endlessly to the other one, who, as far as the driver has seen, is like talking to a pile of meat. But sometimes when he glances back in the rearview, they look like twins.

The aide eyes him suspiciously like those mothers on their lawns. OK. On his best behavior. He’s not that drunk. He stands up straight. The quiet one with the bitch of a mom who got him in trouble for the tarp is already on the lift, waiting. He walks to the boy and pulls him in. “Come on, buddy,” he says. It’s easier today. It’s easier like this.

After he straps the boy to the floor, he climbs down the front steps to sign the pickup sheet. Maybe it’s here where he stumbles. Maybe his eyes are too heavy, his cheeks too flushed. Or maybe the aide has seen the signs this whole time: the swaying in the doorway, taking too long to strap in her clients, the “sweet thing” come-on and jovial laughing, the tell-tale slur. Before this, she’d worked as a bartender and knows what to look for in a drunk. She knows how to defuse his demands for another, how to call him a cab, but she’s at a loss on what to do when he wants to drive her two disabled clients half an hour into the suburbs. Now that he is ground-level, she gets a good look and is sure. She can smell it. “You’re drunk,” she says.

He laughs. “What’re you talking about?”

“You’re drunk,” she says again. “Wait right there.” She turns and runs inside the building to get help.

It’s easier today. He climbs back in the bus, slides the door shut, and fires up the engine. She comes back out and screams “Stop! Call the police!” He hits the gas and guns it out of the parking lot, the wheels screeching as he lurches right onto 101st Street. But it’s only a block to the stoplight on Euclid where the cars stream past one-way, and in the rear view he sees UCP staff members sprinting down the sidewalk, closing in. He lays on the horn and nudges the bus out into the lane. An SUV swerves and honks, nearly clipping his bumper, but the cars behind it brake and beep as he pulls the bus into the lane. There. Thank God. He drives straight, his hands at ten-and-two. He watches the UCP polo shirts grow tiny. He’s done it. He’s gotten away. Easy.

Except Robbie Rob, the one in the power chair, will not shut up. He’s been screaming since they left the parking lot. “Stop! You heard her! Stop! Pull over!”

“Quiet back there,” he barks.

“I heard her. You’re drunk! You’re drunk and you’re driving us! You’re drunk driving! Pull this bus over right now!”

The kid is thrashing in his chair, his face turning red. And now the other one starts, his teeth gnashing: “Ehhhh-ahhh-ehhhh.”

“Shhhh,” he tells them both. “That’s enough.”

He stops at the next light. He acts like everything is normal. He’s pointed the wrong way, going deeper into the city, at 95th Street, down in numbers, not up. He’ll have to turn around. He’ll drive the cripples home and pretend it was just a misunderstanding. He will nod to their mothers. They’ll have no idea. 

The light turns green and he hits the gas. “I’m taking you home, fellas. Relax. That woman was crazy.” He looks in the rearview mirror. Robbie Rob isn’t buying it.

“You think we’re idiots? Fuck you! Pull this bus over right now!” 

So the Disney kid can curse. He didn’t think he had it in him. He calls back, “You want to go home, don’t you?” He feels bad about the veiled threat, but that shuts the kid right up. He turns down a side street and goes east down Carnegie Road, finally in the right direction. “Don’t worry, gentlemen,” he says. “I got you.” He’s feeling good again. It’s easy. But then he swerves a little too much into the left lane and the cars honk. He needs to concentrate.

“You bastard!” the one in the powerchair yells. “Pull over right now, you bastard! Let us off!” The driver grits his teeth. That voice. How can one kid be so annoying? “Stop! Ahhhh!” the kid yells. He will not shut up. He will not give the driver a break.

The kid is yelling so loud that the driver doesn’t notice the sirens. But as Robbie pauses to take a breath, the driver hears the whoop whoop, sees the red and blue flashing in his rear view. “Fuck,” he says. It’s hospital security, the Cleveland Clinic police. They’re not real cops, right? He needs time to think. He could run the lights and speed through the intersections. He could barrel down side streets and ditch the bus in an empty parking lot. He could disappear into the city. And yes, there is a chance he could wreck the bus, that he could smash into another car and end up dead or maimed, not to mention what could happen to his passengers strapped to the floor. Their wheelchairs would not do well with the g-force, their skulls rattling against their headrests. If he overturned the bus, they’d hang from the ceiling like bats.

It could also be so easy. All he needs is to concentrate. All he needs is a little silence. If it was just the other one, the quiet one, he could do it. He could get away.

But the loud one will not shut up. The siren seems to make him worse and he’s thrashing more than ever, practically foaming at the mouth, and now the other one is moaning and for Christ’s sake they will not shut up. That Robbie Rob seizes with rage as he screams: “You bastard! My dad is gonna sue your ass, you bastard!”

And suddenly the driver wakes up to his own life: He is running from the cops in a short bus. He’s very drunk, and he’s kidnapped two disabled men in wheelchairs. And Robbie Rob, so annoying with that nasal voice, is right: He is a bastard. This is what a bastard does, and he is not a bastard. So he slows the bus and pulls off into a side street. He puts the bus in park, raises his hands, and waits.

When the cop opens the door, Robbie is still screaming: “You bastard! You fucking bastard!”

My whole life, I dreamed of protecting my brother. I would be there to put my body in between. I would be there to fight for Danny, to save him. But when my twin brother’s life was truly threatened, when a drunk man was speeding a bus down a Cleveland street with my brother in the back, it was Robbie, not me, who protected him. I cringe to think what would’ve happened if it had been just my moaning brother in the back, with the driver unable to interpret his sounds: What’s happening? Please stop. I’m scared. But there was Robbie being so annoying, yelling in that grating voice grounded in his sinuses, refusing to shut up. It was Robbie who fought for him. It was Robbie who may have saved my twin’s life.

***

When Robbie died five years later, I was away again, this time at grad school. My mother and brother went to his funeral. He’d passed away in his sleep. It felt incomprehensible that Robbie would die before Danny. With those functioning eyes, that coordinated mouth, that agile head, he seemed set up for one long life. But there he was, ashes in an urn. My brother was having his own health problems and my mother felt like she was attending a dress rehearsal for the death of her own son. She was right: My brother would last two more years, until the age of 28, one more year than Robbie’s 27. Now they’re both gone, twins in death, riding that bus together into the unknown.

I wonder, on those long rides home from Cleveland, if my brother ever called him “Eddie,” if he used it to heckle him when Robbie would light into his fourth Disney song that trip, or gush about their cute coworker with the long red hair, or for the second time that week ask him, “How can you tell a vampire has a cold? He starts coffin.” Maybe when I wasn’t watching, Danny learned to fit his mouth around the “r” and the “b” and added another word into his repertoire. I wonder if they passed each other’s names back and forth: Rob-bie. Danny. Rob-bie. Danny.

***

When giving directions, I have heard that instead of saying “hang a right,” the boys who tormented Robbie, now almost middle-aged men, sometimes say, “hang a Robbie,” a cruel artifact from their childhoods, an almost affectionate tribute to their tormentee, who by that time had been dead for almost a decade. After 25 years, his name was still a thrill to say out loud, to map the world with, to drive in its direction.

As I work on this essay, I write Danny’s name. I write Robbie’s too. As I approach the end, I feel terrified, like I’m that lonely and singular “I” again on the dirty gym floor, but instead of my binder of cool bands, I have this essay with their names. I want to retreat into silence again. I wonder what audience I’m writing for, if I’m still holding onto that “we” no matter what it costs. When you read their names, do you pity them? Do you secretly think: Retard. Re-tar-ded. Do you laugh along with my scenes of joy, of play, but really think: “If I was like that, I’d … .” Or can you imagine? Do you have a brother like mine? Do you look like my brother?

You Robbie. You Baka. You Brother. You Twin.

***
Brian Trapp is a fiction and creative nonfiction writer who has published work in the Kenyon Review, Gettysburg Review, Narrative, Brevity, and Ninth Letter, among other places. He teaches at the University of Oregon, and will be a 2021-2022 Steinbeck Fellow at San Jose State University.

Editor: Carolyn Wells 

Illustrator: Zoë van Dijk

Sensitivity reader: Ian Markauskas

The End of the Road

Longreads Pick

“Living in a van represented a new, glamorous ideal, unburdened from homeownership and a steady job — unmoored, even, from the physical world itself. If owning a home was no longer possible, there was endless space on Instagram.”

Source: The Drift
Published: Apr 25, 2021
Length: 22 minutes (5,559 words)

“We Can’t Rush This Kind of Power”: An Educator on Teaching Poetry to High Schoolers During the Pandemic

surreal moment of a butterfly entering the pages of a book
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During this period of remote learning during the pandemic, poet and educator Paola Capó-García decided to reimagine her senior English class into a more immersive and focused eight-week poetry course. Through poems, she thought, perhaps her teenage students could reflect on “the particular chaos of 2020” and begin to process the loss they’d experienced over the year. In a piece at Teachers & Writers Magazine, Capó-García recounts this special time spent with her students, and how she created a safe, quiet space for them to think, to write, and to heal.

Poetry is so often neglected at the high school level, deemed too difficult, too precious, or too esoteric to tackle. And when it is taught, it’s typically filtered through dead white men. But teaching Whitman and Frost does not fit into my politics as a teacher and human, and it certainly does not fit the narrative of the students my school serves. I’m not interested in widening the gap between them and poetry, between them and knowledge. My goal, now and always, has been to make poetry accessible, exciting, and useful to young people. To teach them that the way they speak and live is already poetic. To help them manage the messiness of 21st century youth with 21st century language. And in this extra-messy age of Covid and Zoom and rightful apathy, poetry felt like the perfect way to make sense of it all.

Between a raging pandemic, civil rights unrest, controversial U.S. election, and graduation on the horizon, the students needed a space to explore the enormity of their feelings. To address this, I designed the writing prompts around the concept of loss. The world we’re living in is punctuated by overwhelming loss, and it must be confronted and articulated in cathartic ways.

I value the elegy as a poetic form for teenagers because it invites healing; it’s a way to give grief a name and exit strategy. I believe that one of our most important roles as teachers is to provide authentic opportunities for young people to heal.

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Crosby, Stills, Nash & Young’s Lost Album, Human Highway

CSNY, January 1, 1970. (Photo by Michael Ochs Archives/Getty Images)

David Gambacorta | Longreads | March 2021 | 15 minutes (4,190 words)

They needed a song, but not just any song. It had to be a throat-clearing, lapel-grabbing, hey-what’s-that-sound number that could open what was shaping up to be one of the most anticipated albums of 1970: the debut of the super group to end all super groups, Crosby, Stills, Nash & Young. “We don’t have that song where you know that a listener will not take that needle off the record,” Graham Nash told Stephen Stills sometime in the fall of 1969, after they’d already labored for countless hours in a recording studio in San Francisco. “We need that song where we’ve got them from the very beginning.”

Nash, a skinny, shaggy former member of the British group The Hollies, and Stills, a soulful, straw-haired survivor of Buffalo Springfield, knew plenty about grabbing listeners by the ear. A year earlier, they’d discovered — at Joni Mitchell’s house in California, maybe, or Cass Elliot’s, no one’s quite sure — that they could create heavenly harmonies with David Crosby, the ex-Byrds singer who wore a droopy mustache, and the amused grin of a man who was in on some cosmic joke. They released an album, Crosby, Stills & Nash, that was filled with instant classics like the soaring “Suite: Judy Blue Eyes.” Then, at the urging of Ahmet Ertegun, the owlish Atlantic Records honcho, the trio turned themselves into a quartet, adding — with some reluctance — Neil Young’s reedy voice, barbed-wire guitar playing, and unpredictability to the mix. After the four of them played in front of 400,000 swaying, stoned people at Woodstock, their own concerts started to take on the feel of what Rolling Stone described as “mini-Woodstocks” that unleashed “effortless good vibes.”

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The Syrian Rebels Who Found Refuge in Books

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Darayya in Syria was rendered a ghost town by Asaad’s regime after civic resistance — becoming a town of rubble where a mere 12,000 starving survivors clung on. One of these survivors was Ahmad Muaddamani, who spoke to Delphine Minoui from The Guardian about a remarkable thing that he and his friends did to keep life in Darayya bearable — they built a library. In books, the people left in Darayya found a refuge and an “atmosphere of collective intimacy, as well as a sense of ethics, discipline and, oddly enough, normality” that was shared by both civilians and fighters of the Free Syrian Army alike.

Fearing reprisals from the regime, the organisers decided this library would be kept in the greatest of secrecy. It would have neither name nor sign. It would be an underground space, protected from radar and shells, where avid and novice readers alike could gather. Reading as refuge. A page opening to the world when every door is locked. After scouring the city, Muaddamani and his friends uncovered the basement of an abandoned building at the border of the frontline, not far from the snipers, but largely spared rocket fire. Its inhabitants were gone. The volunteers hurriedly constructed wooden shelves. They found paint to freshen the dusty walls. They reassembled two or three couches. Outside, they piled a few sandbags in front of the windows, and they brought a generator to provide electricity. For days, the book collectors busily dusted, glued, sorted, indexed and organised all these volumes. Now arranged by theme and in alphabetical order on overstuffed shelves, the books found a new, harmonious order.

These young Syrians cohabited with death night and day. Most of them had already lost everything – their homes, their friends, their parents. Amid the chaos, they clung to books as if to life, hoping for a better tomorrow, for a better political system. Driven by their thirst for culture, they were quietly developing an idea of what democracy should be. An idea that challenged the regime’s tyranny and Islamic State’s book burners. Muaddamani and his friends were true soldiers for peace.

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The Struggle of Having a Pandemic Baby

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Coping with the pandemic over the past year has been tough for many people — but imagine dealing with this strange new reality whilst also bringing a whole new person, or even two, into the world. Sophie Gilbert experienced this firsthand, explaining in The Atlantic how the only people to really see her pregnant were her husband, doctors, and doormen, with the isolation only increasing once her twins arrived. With powerful honesty, Gilbert explains the difficulty of becoming a new parent when your support systems are locked down. Not only do you have to figure a whole lot out for yourself, but your new identity as a mother occurs in a vacuum, with no one bearing witness to the transformation, or to the loneliness. 

Every person who’s given birth during the past year, I’d guess, has experienced a version of the same thing—a sense of isolation so acute that it’s hard to process. I was used to loneliness being something like a dull throb, a kind of ambient hum that rose or fell depending on what else was going on. The isolation of pandemic new parenthood was different. It felt like a wound. It stung bitterly from the very beginning, and every day that went by only made it more raw. Every milestone that my babies hit without anyone being around to witness it was colored with some grief. Every month we spent in the square-mile perimeter of our neighborhood made it harder to imagine ever leaving. Thanksgiving dinner, which we scarfed down on the couch after the twins fell asleep, was surprisingly comforting, but Christmas made me ache for everything it didn’t have. I can now see the same fragments of hope on the horizon that everyone can—vaccines, maybe a return to the office, some eventual imitation of “normalcy.” But the life that I had is gone, and I don’t know how to imagine a new one that has room for my children and anything else. Every second during which I’ve been a mother has been defined by closing off, shutting down, and retreating into a space small enough where the four of us can be safe.

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Don’t F**K With the Pet Detectives

Laura Breiling

This is an excerpt from The Atavist‘s issue no. 112, “Cat and Mouse,” by writer Phil Hoad. With dozens of felines turning up dead around London, a pair of pet detectives set out to prove it was the work of a serial killer.

Phil Hoad | The Atavist | February 2021 | 5 minutes (1,558 words)

 

The Atavist is Longreads‘ sister publication. For 10 years, it has been a digital pioneer in long-form narrative journalism, publishing one deeply reported, elegantly designed story each month. Support The Atavist by becoming a magazine member.

It was the body on the south London doorstep that got everyone’s attention. On the bright morning of September 23, 2015, a woman walked outside her home to find a cream-and-coffee-colored pelt, like a small furry Pierrot. It had dark forelegs, and its face was a smoky blot. It was a cat, slit throat to belly; its intestines were gone.

The woman rang the authorities, who came and disposed of the body. Three days later, she looked at a leaflet that had come through her mail slot, asking whether anyone had seen Ukiyo, a four-year-old ragdoll mix whose coat matched that of the dead cat. The woman broke the bad news to Ukiyo’s owner, Penny Beeson, who lived just down Dalmally Road, a nearly unbroken strip of poky, pebble-dashed row houses in the Addiscombe area of Croydon.

Beeson was inconsolable. “I shook for the whole day,” she later told The Independent.

“R.I.P ukiyo I feel devastated,” her son, Richard, posted on Facebook. “Hacked to death and left on someone’s doorstep. Some people are so sick!”

A few days later, Addiscombe’s letter boxes clacked again as another leaflet was delivered. This one warned that Ukiyo’s demise wasn’t an isolated incident—there had been a troubling spate of cat deaths in the area. The leaflet was printed by a local group called South Norwood Animal Rescue and Liberty, or SNARL.

Tony Jenkins, one of SNARL’s founders, had recently become his own master. At 51, with a reassuring, yeomanly face and a golden tinge at the very tip of his long, gray ponytail, Jenkins was laid off after 25 years working for a nearby government council. He hadn’t gotten along with his boss, so getting sacked came as something of a relief. With a year’s severance in his pocket, “I was enjoying my downtime,” Jenkins said. That included being with his girlfriend, a 44-year-old South African who went by the name Boudicca Rising, after the first-century Celtic warrior queen who fought the Romans to save the Britons. Among other things, Rising and Jenkins shared feelings of guardianship toward animals. Their homes at one point housed 34 cats, a dog, two gerbils, and a cockatoo between them. The couple had formed SNARL together.

Scanning Facebook one day in September 2015, about a week before Ukiyo was found dead, Jenkins stumbled upon a post from the nearby branch of the United Kingdom’s largest veterinarian chain, Vets4Pets, that described four gruesome local incidents in the past few weeks: a cat with its throat cut, one with a severed tail, another decapitated, and a fourth with a slashed stomach. Only the final cat had survived. Jenkins told Rising about the post. “That doesn’t sound right,” she said. “We need to do some digging.”

Digging was her forte. Always impeccably dressed, with an ornate gothic kick, and unfailingly in heels, Rising was a multitasking demon on a laptop. By day she worked for an office management company. By night she was part of the global alliance of animal rights activists. She was one of many people who used small details in online videos of a man torturing felines to identify the culprit, a Canadian man named Luka Magnotta. He was reported to police, who didn’t take the allegations seriously, and Magnotta went on to murder and chop up his lover in 2012—a crime recounted in the Netflix documentary Don’t F**k with Cats.

On the heels of Ukiyo’s death, Rising and Jenkins distributed SNARL’s leaflets throughout Addiscombe, warning of the threat to local felines. While to an uninterested eye some of the attacks might have appeared to be the indiscriminate cruelty of nature—the work of a hungry predator, say—SNARL believed they might be a series of linked and deliberate killings. Whether the crimes were perpetrated by an individual or a group SNARL wasn’t sure. It hoped the leaflets would help turn up more information.

SNARL soon had reports of more incidents in the area, for a total of seven: one cat missing, two with what SNARL subsequently described as “serious injuries,” and four dead. Rising said that vets who saw the deceased cats’ bodies told her the mutilations had been made with a knife. On September 29, SNARL sent out an alert on its Facebook page saying as much. The cats’ wounds, the group insisted, “could only have been inflicted by a human. Their bodies have been displayed in such a way as to cause maximum distress.”

That was SNARL’s official line. On Rising’s personal page she went further, emphasizing her belief that Addiscombe was dealing with a serial killer. “This is a psychopath,” she wrote.

While to an uninterested eye some of the attacks might have appeared to be the indiscriminate cruelty of nature, SNARL believed they might be a series of linked and deliberate killings.

On the afternoon of October 24, 2015, two miles southeast of Addiscombe, 47-year-old Wayne Bryant picked his way over the fallen leaves of Threehalfpenny Wood, named for a 19th-century murder victim found there with that sum of money in his pocket. The dry autumn air kept Bryant alert as his wide-spaced blue eyes scanned left and right and he listened to the wind hissing through the oak canopy. Bryant’s cat, Amber, like many domestic felines, kept regular hours with her comings and goings, but the previous day she hadn’t returned in the mid-afternoon as she usually did. When Amber didn’t show up the following morning, Bryant and his wife, Wendy, formed a search party.

A few years before, Bryant had suffered a serious spinal injury at work, causing a leak of cerebrospinal fluid and, eventually, several hematomas. Animals had always been a big part of his life—he and Wendy had a menagerie of rescue pets, from dogs to guinea pigs to lizards—but as he struggled with memory problems and long-term unemployment, the emotional support they provided became irreplaceable. Bryant had had Amber for eight years, since she was a six-week-old kitten. “A friendly little thing,” he told the website AnimalLogic. “A little curtain-climber.”

As they searched the woods, Bryant’s wife called to him. In a small clearing off a path, sheltered by a cluster of exposed tree roots, the ball of black and orange fur was unmistakable. But Amber was headless and tailless, except for that appendage’s very tip, which had been placed on her belly. The couple were sickened. They shrouded their beloved pet in a towel and took her home. Then Bryant remembered an article in the Croydon Advertiser about a group convinced that several recent cat killings were all connected.

A couple of hours later, Jenkins and Rising were at Bryant’s door. “I remember Wayne’s first words to me: ‘Ain’t no fox did that,’” Jenkins told me. “If I ever write a book about this, that’s what I’d call it.”

It was the first time either Jenkins or Rising had come face-to-face with a suspected cat killing. Neither of them had any forensics training. Unwrapping the towel that held Amber, they noted the clean severing of her head and tail, which seemed to corroborate Bryant’s view that no animal could be responsible. They asked the family to show them the crime scene. There was no blood on the ground, meaning that either her injuries were inflicted after death or Amber was killed elsewhere and moved to the spot in Threehalfpenny Wood where her owners found her. Rising and Jenkins took Amber’s body to a vet for further examination.

Bryant gave a statement to the police, and Rising went to the Royal Society for the Prevention of Cruelty to Animals (RSPCA), the UK’s main animal welfare charity. She later claimed that a representative brushed her off, saying that a fox probably killed Amber. Besides, the RSPCA dealt primarily with instances of cruelty in which the victims were still alive: It received more than 11,000 complaints a year in Greater London alone.

Jenkins was incredulous when he heard about the RSPCA’s response. “Although Croydon’s got a bad reputation, a lot of crime, I don’t think our foxes carry knives. And foxes certainly do not kill cats,” he said. At least, “it’s very, very rare.” He doubted that scavenging creatures would be interested in removing and eating feline heads and tails. Rather, they’d go for the nutritious internal organs, and SNARL hadn’t seen that kind of damage in any killing other than Ukiyo’s.

In October, there was another suspected cat killing in Croydon. Then SNARL began to get reports from farther afield, one in neighboring Mitcham and two in nearby West Norwood. Nick Jerome’s cat, Oscar, was found headless on his street. “None of us went to pieces over it, but it was obviously distressing at the time,” he said. In Coulsdon, on the southern edge of Croydon, David Emmerson discovered his cat, Missy, decapitated and tailless. His 18-year-old daughter, already struggling with the loss of her aunt the previous year, was devastated. Emmerson never told his autistic son the full story of what happened. The truth was too ugly. “I never grew up as a cat person,” he said, “but maybe because we got her as a kitten, she became one of us. Mine was the lap she chose to sit on when she sat down. I’m not sure why. I adored her.”

The RSPCA had its party line and wasn’t getting involved, but that didn’t stop the local press, which knew a good story when it heard one. By mid-November, reporters had made a lurid christening: The Croydon Cat Killer was on the prowl.

Read the full story at The Atavist

Out There I Have to Smile

Illustration by Ashanti Fortson

Heather Lanier | Longreads | March 2021 | 16 minutes (4,473 words)

 
A few years ago on a gorgeous June day, I found myself in a windowless bathroom with forget-me-not wallpaper, my butt on a toilet, without any good reason to be there. It was a standard mothering move. Beyond the door, I could hear my two small kids laughing and eating cereal, so I stayed in this little space, smartphone in hand. In an hour, I was headed to a bowling alley with my kids, both of whom could now walk through a doorway on their own. And this was a brilliant new development, not just for the 2-year-old who’d learned to walk at the standard age, but for the 4-year-old, Fiona, who’d spent the past three and a half years in physical therapy striving toward this lofty goal. Forty-five percent of people with Wolf-Hirschhorn syndrome walk, said the report when I first got her diagnosis. Her ability to walk meant I no longer had to consider wheelchair or stroller accessibility. Her ability to walk independently meant she could navigate the tight turns around a bowling ball return without having to steer a clunky walker. So I was taking my kids bowling, as soon as I stopped pretend-peeing and reading on my phone.

I was reading a friend’s blog post about a recent appointment with her counselor. As soon as she mentioned her son, who has the same chromosomal syndrome as my daughter, she began to cry. 

The therapist asked, “Why do you always cry when you talk about him in here?” 

In here was the therapist’s office, maybe a subdued room with sage walls and elephant statuettes. Out there, my friend pushed her 4-year-old son in a wheelchair. 

My friend looked up at the ceiling a moment and thought. Why do I always cry when I talk about him in here? The answer hit her, and she sobbed. She managed this sentence, eked out between heaving breaths: “Because … out there … when I’m talking … about him … I have to smile.”

I put my hand over my mouth. The windowless bathroom. The forget-me-not wallpaper. I burst into tears. 

* * *

For bodies that don’t fit into a certain mold, for bodies we call disabled, out there can be a treacherous space. Out there has steps where you need a ramp. Out there has strobe lighting that could make you seize. Out there writes stories over your body (she’s sad, broken, wrong) when you just need toilet paper. 

For parents of kids with disabled bodies, out there can be exhausting. It maintains chipper myths about babies that your child breaks. What’s with that feeding tube? It tosses questions at your feet like it’s throwing you something between flowers and rotten fruit. Why’s she so small? What happened? What’s wrong? You answer with a smile, or you answer with fatigue, or you turn your head because none of your business

Out there is risky. Your son might sit in a classroom led by a teacher who doesn’t believe he can learn. Or your daughter might need medical care from a doctor who thinks she’s a tragedy. 

Out there is inconvenient. The doorway isn’t wide enough for your adaptive stroller. The wood chips of the town’s only playground are terrible for wheelchairs. The librarian concludes public story time with a craft that requires scissors, and you must now serve as your child’s occupational therapist, back hunched, palms sweaty, enabling the arduous work of cutting paper.

Out there is not exactly designed for your kind. 

* I use both person-first and identity-first language in this essay. As a nondisabled person, I don’t have a right to claim an identity for someone, so I err on the side of identity-first language until I know a person’s preference — and my daughter hasn’t indicated one. I also use identity-first language to stand with disability activists who argue that linguistic acrobatics to avoid the word “disabled” are a manifestation of our culture’s ableism. We do not say, for instance, “I am a person with femaleness.” #saytheword

As a white, straight, cisgender, non-disabled woman, I must imagine how this sentiment holds true for other bodies. My experience as a caregiver to a kid with disabilities* has put me in the closest relationship to this truth. Out there is not designed for many. 

Which is why in here spaces are so delightful. And it’s why, especially in early parenting, I often lingered in them for longer than I needed. Idling in the bathroom. Struggling to leave the house. In here applies little pressure. In here asks no questions. In here often lets you and your kin be as you are.

In preschool, my daughter Fiona walked stiltedly. Her gait was not the smooth coordination of typical preschoolers. She slapped her right foot down, and her left foot followed pigeon-toed, afterthought more than intention. She sometimes held her arms out, and because she was nonverbal, she said, “Ahh, ahh,” plowing toward whatever caught her eye. When we were out there, people sometimes looked at her because she was adorable and magnetic and thrilled by life. And sometimes people followed her with a calibrating gaze. I could tell that they weren’t admiring the cuteness of youth but instead trying to answer the question, What’s wrong? 

“You’re lucky,” a pediatrician said to me during a routine checkup. “At least you know what’s wrong. Some parents don’t even know that.” He looked up from my kid, his eyes sharp with intensity, and nodded. “You know what I mean?” But it wasn’t a question. 

Nothing is wrong with my girl, I wanted to say.

No, of course not, the doctor might have corrected. Inside he’d likely think, Yes, of course there’s something wrong, and then he’d recite the long list of diagnoses in her medical file: epilepsy, hypotonia, hydronephrosis, scoliosis, developmental delay….

Things her medical file has never listed: loves coloring, loves cheese, rocks a Converse sneaker, appreciates jalapeños, finds the beat, will increase speed tenfold for a turn at the swing.

Wrong can slide too quickly into another concept: tragic. There’s a prevalent Hollywood cliché (which bears no resemblance to real-life statistics) that disabled people wish to die. I didn’t need a child with Wolf-Hirschhorn syndrome to spot this cliché; I’d noticed it years before I had Fiona. Million Dollar Baby: a female boxer triumphs in fight after fight only to break her neck, end up quadriplegic, and ask her coach to help her kill herself; he obliges. Me Before You: a grumpy guy in a wheelchair is hell-bent on committing suicide, then falls in love with his caregiver who tries to show him that life is worth living. He kills himself anyway, because, well, you know, wheelchairs. The films are dramatic expressions of the old, ableist assertion that I’d rather die than live like that. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth. What my friend and I have known, without ever knowing we’ve known, is that our culture judges the worth of our kids by judging our contentment. I hadn’t named this until I sat in the bathroom and read my friend’s blog post on my phone, but along with all the obstacles to surmount or circumnavigate or abandon, out there obliges us to offer our cheer. Are we happy? If so, then maybe the lives of our children aren’t tragic. Out there I have to smile. 

* * *

In The Spirit Catches You and You Fall Down, Anne Fadiman tells the story of Hmong child Lia Lee, who has severe epilepsy. It’s a highly lauded book, and for good reason. But midway through, Lia suffers a massive seizure, nearly two hours long, and goes from a happy, hyperactive child to a  mostly unresponsive quadriplegic. “Vegetative state,” the doctors said, and I cringed, eager for Fadiman to take the phrase to task. Because Fadiman had thus far done a beautiful job revealing the cultural biases of both the Hmong family and their Western doctors, I figured she’d unveil the ableism inherent in ever likening a human to a carrot or a beet. I thought of Martin Pistorius, who spent 12 years in an unmoving body that doctors assumed was also “as good as not there, a vegetable,” but as he says years later in his TED talk, “I was aware of everything.” 

Fadiman fails here. She doubles down on the doctors’ sentiment, offering this description of patients in so-called “vegetative states”: “pasty-skinned carcasses with slack mouths, hair like straw, bodies that smelled of urine even after they were bathed.” Carcasses. The word cuts. It describes shells in which humans once lived. It should not be used to describe actual humans, still living. Fadiman agrees with the family when they think Lia’s soul is gone.

At this point in the story, Fadiman pivots to the mother, oh the mother, and how she adapts to her child’s altered life. Fadiman paints some beautiful portraits. The mother lovingly washes her daughter once or twice a day. The mother wears her daughter in a hand-embroidered cloth carrier. The mother feeds her daughter spoonful after spoonful of rice and then kisses her rice-covered face. “Sometimes I thought: this is not so terrible,” writes Fadiman. Mid-page, I thought Fadiman might lean toward valuing Lia’s new, altered life. Admittedly, she’d do so through the trope of Lia’s gifts to nondisabled people. Look at how much love she brings her family. But gift is certainly better than carcass. 

Instead, Fadiman pivots: “But whenever I began to be lulled by this relatively rosy picture, I was drawn up short by an explosion of rage from [the father] or, more frequently, by a sudden seepage of grief from [the mother].” The parents’ feelings tip the scales. Fadiman can’t see the value of Lia’s life if it brings not just love but suffering, if caring for Lia is not just a tender and physical act of love, but also a grief-stricken, arduous job.

Out there we all have to smile. 

* * *

Happiness is an encouraged performance in America whether you’re disabled or not. By analyzing photographs, Stanford psychology professor Jeanne Tsai found that U.S. leaders are over six times more likely to display “open, toothy smiles” than Chinese leaders. This same smile, what Tsai calls “the sign of American happiness,” also appears more frequently in American children’s stories and women’s magazines than in East Asian counterparts. “A lot of immigrants have talked to me about how exhausting it is being in the United States,” she told NPR reporter Maiken Scott of The Pulse, “because you have to smile all the time.” 

But the stakes of that performance are higher for disabled people and their caregivers. Princeton ethicist Peter Singer has kept his job even after arguing that parents of disabled babies should have the right to kill their kids. Because people with disabilities cause too much suffering, he says. 

The birth of a child is usually a happy event for the parents. …  It is different when the infant is born with a serious disability. Birth abnormalities … turn the normally joyful event of birth into a threat to the happiness of the parents and of any other children they may have.

Parents may, with good reason, regret that a disabled child was ever born. In those circumstances, the effect that the death of the child will have on its parents can be a reason for, rather than against, killing it.

Singer, whose book Practical Ethics is in its third edition, at one point suggests that his argument about murdering babies applies to disabilities that make a child’s life “so bleak” that it’s “not worth living.” (How would anyone determine a life “not worth living”? And who gets to decide such a thing?) But then he argues that hemophiliacs too could be justifiably killed in infancy because a woman will only have so many children, and the hemophiliac child might prevent her from having another, healthier baby. “It is … plausible to suppose that the prospects of a happy life are better for a normal child” than for a hemophiliac, he writes. 

I think of my college roommate, a gregarious extroverted gay man who competitively roller skated and also had hemophilia. While he blasted Latin pop through our kitchen and danced with joie de vivre and sang into a spatula, I, the “normal” non-hemophiliac person, brooded in my room to the tune of melancholy female artists like Tori Amos, while writing poems about romantic angst. Certainly, disability doesn’t determine happiness. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth.

But the bigger issue is this: Why should a person’s happiness — or lack thereof — be used in proving their right to live? And it’s not just Singer who delivers this message. Here’s disabled writer Nancy Mairs on the subject, from “On Being a Cripple”: “In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple isn’t playing by the rules. Early on I vowed that, if I had to have MS, by God I was going to do it well. This is a class act, ladies and gentlemen. No tears, no recriminations, no faint-heartedness.” 

You’ll hear parents of kids with disabilities negotiate this pressure to be happy all the time when they describe their children. “He has Down syndrome, and he’s nonverbal,” a father will say, “but he’s happy!” Or a mother will say, “She has cerebral palsy, and she doesn’t walk, but she’s brought us so much joy!” We can’t fault the parents. They add this caveat of happiness because they know it carries necessary currency. 

But this can be exhausting. It turns happiness into a rhetorical strategy, and makes the faces of disabled people and their caregivers a walking argument that should never have to exist in the first place. 


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* * *

During Fiona’s second year, I started a blog called Star in Her Eye. I wrote it because my child’s eyes were bursting with divine luminescence, and yet an unsmiling pediatrician called her a “bad seed.” I wrote the blog because parents at playdates were talking about babyproofing their outlets, and I was talking about the interesting sculptures at the cardiac unit of the children’s hospital. I wrote it because my girl was coming up with ingenious ways to communicate despite her verbal limitations, and yet because she didn’t babble, an early interventionist declared her “at zero.” I was in a very different field of parenting than the baby books described, and I needed to find my people. I also needed to write about ableism — how I was encountering it, how I was exhuming it from myself. A deep and abiding ethics guided my decisions about what to write and how, but I always wore the weight of my words. Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden. 

In December 2015, three years into the blog, the disability-themed online venue The Mighty published a satirical article called “Introducing: Meltdown Bingo.” In it, an autistic parent of an autistic child used a bingo card meme to make light of her son’s meltdowns. Readers were rightfully outraged, blasting the article for objectifying a kid’s suffering. (It was eventually taken down.) Critics also noted The Mighty’s slant toward publishing, as blogger Savannah Logsdon-Breakstone put it, “warrior mommy blogger content … focused on bemoaning how hard it is to parent a child with a disability. … This is a dangerous narrative.”  

The outrage fueled important conversations about disability representation (#CrippingTheMighty). But articles also popped up admonishing parents for writing about their kids at all. In an article published soon after, the advocacy website Ollibean suggested that parents should not write about their children if they aren’t able to offer consent, a principle that would eradicate the stories of certain intellectually disabled people, pushing them and their caregivers — disproportionately women — to the unwritten, invisible margins. During the years that I wrote the blog, Fiona could not offer me consent, and one of the things I often wrote about was our very efforts to help her communicate so she could loudly disagree with me. But that took time — many years with therapists and a speech device.

The challenges of parenting a disabled child — “the prejudice and ableism, fighting systems for an equal education, equal and accessible medical care, accessibility, insurance coverage for a new wheelchair or communication device,” the Ollibean article noted — are injustices built into a system that needs to change. This is 100% true. But the quote fell under the subheading, “It’s Not Your Disabled Child, It’s the System.” In other words, parenting a kid with disabilities isn’t ever hard because of the inherent difficulties of a disability. 

It was not hard, for instance, taking my infant daughter to a swallow study (to make sure she wasn’t dying from her own spit) and two kidney reflux exams (to make sure these vital organs weren’t at immediate risk of failure). It was not hard spending four years helping her learn to walk, or three years helping her tiny, fine-motor-limited fingers navigate a robust communication device so she could tell us what she wanted to eat. Likewise, it was not hard when my husband and I hovered over her body as she jerked in convulsions, her eyes pried open by erratic brain synapses, and it was not hard to check the clock while we did this. More than five minutes, and a seizure can cause brain damage. 

Of course it was hard. Or, it was not hard because hard is the word we use to describe cellophane-wrapped candy, while this is blade-sharp, a knife slicing through the gut. 

But if we can’t say it was hard, then how can we affect any change that would help people in power understand what kind of support we might need?

And yet, if I do say it was hard, then I am fueling, as Logsdon-Breakstone put it, “a dangerous narrative.” I’m risking the chance that people will see my kid, my glorious beautiful curly-haired feisty stubborn rascal of a kid, and think, That mom’s unhappy; that kid’s life is tragic

Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden.

My facial expressions out there are territory over which ideologies are fighting. My emotions out there have rhetorical power. And I will use everything I have to argue that my kid’s life has equal value to anyone else’s.

So I’ve smiled. Especially in those early years, I smiled at the nurse who called my kid’s name in the waiting room. I smiled as she led us to a room for X-rays. How cute, she said to my 38-inch 5-year-old in purple hospital jammies. I smiled after I unfolded Fiona’s walker with a loud click at the library, eliciting stares, and I smiled while the teacher talked me through Fiona’s low report card scores. 

It wasn’t a conscious thing, the smiling, until I read my friend’s story while sitting in the forget-me-not-wallpapered bathroom. But when happiness becomes a rhetorical move, it’s a lot less fun than regular happiness. “The freedom to be happy,” writes Sara Ahmed in The Promise of Happiness, “restricts human freedom if you are not free to be not happy.”

* * *

In “Special Olympics and the Burden of Happiness,” Lawrence Downes of the New York Times argues that Special Olympics doesn’t give itself the freedom to be unhappy either. Downes describes the hours-long medal ceremony at the 2015 World Games as a “cascade of triumphant moments” and a “carefully thought-out strategy” where music swells and the crowd cheers as athletes receive their awards. According to Downes, the organization intentionally uses joy as a rhetorical strategy to advocate for the healthcare, education, and other rights of people with intellectual disabilities. The article acknowledges the global plight of people with intellectual disabilities, many of whom are denied an education, sequestered in institutions, and suffer abuse and neglect. If Special Olympics is trying for a revolution of sorts, “its revolution is televised, happily,” writes Downes, “on ESPN.”

But Downes subtly critiques the efficacy of this strategy, calling Special Olympics “an organization so good at making its athletes and the public happy, so bursting with good will and smiles, that nobody has to take it seriously. It has waged a nearly 50-year battle for inclusion and acceptance for people with intellectual disabilities, and people still think it’s a track meet.”

In March 2009, President Obama told Jay Leno of The Tonight Show about his recent bowling score of 129. “It was like Special Olympics or something,” he said with a laugh. Before the show even aired, he was on the phone, apologizing to chairman Timothy Shriver. According to Shriver, Obama invited the athletes to the White House to school him in the sport and “help him improve his score.” If the silence in news reports is any indication, the match never happened.

* * *

Our bowling match did happen. I eventually wiped my tears and left the in here space of the forget-me-not bathroom. I drove my kids to the bowling alley, parked the car in a blue-painted spot, and hung the handicapped placard on the rearview mirror. One by one, I hauled my kids out of their car seats. I held their hands as we crossed the parking lot. I opened the glass door for them, and in they walked. Right through the door.

When we got into the lobby, my heart sank: The lanes about 50 meters ahead were dark like a nightclub. Red and blue and yellow laser beams flashed across the floor, the ball returns, the scoreboards, and the seats. Pop music blasted from above.

From the shoe rental desk, my friend Kristy, Fiona’s godmother, came to us with a worried expression. “I’m sorry,” she shouted over the music. “They just turned them on.”

I exhaled. Kristy had called in advance to be sure, and the guy on the other end had said no, they didn’t do laser bowling during the day. 

I paused, standing near the entrance, trying to figure out what to do. “It’s not like she’s had seizures from strobe lights before,” I said, recalling the EEG where a technician flashed a light in Fiona’s face and measured her brain waves. “It’s just … it’s a risk.” Further inside, I watched the laser lights spin around, casting erratic, broken-up rainbows. New seizure triggers can emerge without warning in people with Wolf-Hirschhorn syndrome.

We rented our shoes and paid for a lane. The red and blue and yellow beams swirled around us. Miley Cyrus blared. “You wanna go first?” Kristy shouted two feet from my face. Any farther and I wouldn’t have heard her. Her teeth glowed white from the blacklight. I went after Fiona, who was toddling down the lane, ready to walk its length. The bottoms of her Converse sneakers glowed. 

The place was mostly vacant. Had anyone seen us in the dark, they would have seen two adults and two kids having a leisure afternoon. They would have seen the adults center a kiddie ramp at the top of the lane and help the kids push their balls down the ramp. They would have seen the balls make their slow-rolling treks toward the pins and knock a few down. Yay! the onlookers would have heard Kristy and me say as we clapped. The kids sometimes clapped too, and sometimes turned around unfazed, heading for another spot in the darkness.

These onlookers probably wouldn’t have seen my furrowed brow, or my eyes, straining in the dark, to assess whether my daughter was having myoclonic blinks or jerks. They wouldn’t have seen me silently curse this bowling lane for turning a fun outing into a shitty, stressful event. 

Neither would they have seen Fiona seize, because — thank God — she didn’t. And they probably would not have seen me smile much, either. But if I had smiled that day, it would have glowed bright as an incandescent bulb. 

* * *

In the summer of 2020, I published a memoir, Raising a Rare Girl. How could I write a book about Fiona that avoided the trap of the “my kid’s so happy” narrative? Because it turns out, my kid is happy — often exceedingly so. Fiona, now age 9, has way more joie de vivre than me. Though not yet a swimmer, she plows her body into ocean waves and screams with delight. She yawps for joy at the mention of Kit Kats. She is really, really stoked to go for walks around the block. She and my old college roommate would get along smashingly. And yet a story that emphasizes the “look, my kid is happy!” narrative would lodge her right into the very pressure Nancy Mairs identifies: “In our society, anyone who deviates from the norm had better find some way to compensate.” 

And how could I write a book that also avoided the “my kid is so hard” narrative? Because that’s true, too.

I tried to write a book that showed my daughter’s inherent value — and our culture’s denial of it — whether she was happy or not. I ended up writing a book about what it means to be human. “This belief in the virtue of the ‘happy’ and suffering-free life sterilizes and shrinks us,” I wrote toward the end, “minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy.” What I tried to do was show, honestly, the joy and the grief, the hard and the beautiful, and say: It all belongs. 

* * *

You ask: Am I happy? I say, sometimes less than before. Because she wakes six times a night. Because regular trips to pediatric specialists are no strolls through the park. Because special educators sometimes see her as broken, in need of fixing. Because her needs often exceed my energy. Because every time I’ve hovered above her convulsing body at night, counting the minutes, I might have gained something like courage or “life experience,” but I also felt gashed  in a bodily place that I can’t find, I can’t name. 

Because loving someone has never been so hard.

You ask: Am I happy? And I say, sometimes ten times more than before. Because her fine, blondish-brown hair brushes my cheek when we snuggle. Because her sapphire blue eyes seek out mine every day. Because at age 5, after three years of speech therapy, she at last made a hard C sound. Come, she said, and I did. Because when she was 4 and I asked which hat she wanted to wear, this one or that, she pointed and said “gamma!” (meaning “that one”) with such high-pitched glee that it felt like I held not a red wool ski cap but a lifetime supply of joy. Because the stress of a swallow study, the labor of an orthopedist’s appointment, and the fear of EEG results make the good news of a clear airway, an unchanged scoliosis curve, and an unworrying set of brain waves all the more glorious. 

Because loving someone has never been so hard.   

What I ask is that my answer doesn’t matter in determining her worth.

* * *

Heather Lanier’s memoir, Raising a Rare Girl, was a New York Times Book Review Editor’s Choice. Her recent essays appear in The Atlantic, The Wall Street Journal, and Off Assignment. She is an assistant professor of creative writing at Rowan University. You can find her on Instagram at @heatherklanier

Editor: Cheri Lucas Rowlands

Illustrator: Ashanti Fortson

Fact-checker: Nora Belblidia