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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 Rubber Industry’s Toxic Legacy in Akron

Longreads Pick

“The jobs that a whole generation of Akronites held are mostly gone, but the health effects of the toxins they worked around every day still linger.”

Source: Belt Magazine
Published: Mar 5, 2021
Length: 20 minutes (5,088 words)

The Fracking Lottery

George Hagemeyer in front of his new living-room wall mural. Credit: Tristan Spinski

Colin Jerolmack | Up to Heaven and Down to Hell: Fracking, Freedom, and Community in an American Town | April 2021 | 2,303 words (8 minutes)

Excerpted from Chapter 3: The Fracking Lottery

Like state-run lotteries (and unlike most of real life), the fracking lottery was also rather random from a sociological perspective, in that lessors’ socioeconomic status had little bearing on their chances of coming out a winner.7 In fact, some of the biggest winners were land-poor folks like George Hagemeyer, whose inherited properties were millstones before fracking. Not long before I met George, he was barely getting by on his custodian’s pension. Duct tape traversed his linoleum kitchen floor. The cabinets sagged. A faded wallpaper mural of a fall landscape that had enjoyed pride of place on his living room wall for forty years was peeling. A tarp had been hastily draped over the leaking roof of a ramshackle trailer parked in his front yard that George used as a shed. He drove a jalopy.

Not that George was one to complain. “If you wanna look at the bad things all the time, that’s all you’re ever gonna see. You hafta look at the good side, too.” The good side was that, out of seven siblings, he was the one who had been gifted his dad’s land. He planned to die here, but he worried about what would happen to the property afterward. The natural order of things, according to George, is for a father to entrust his son to be the land’s next steward. But George didn’t have a son, and neither his adopted daughter nor his teenage granddaughter showed interest in living on the estate. His brother, who used to live next door, on a sliver of the family farm, had already sold out.

George’s fortunes did not change overnight. Like the Shaners, he leased in the mid-2000s, before anyone in the region had even heard the word fracking. The going rate at the time was only $5 per acre, roughly the amount that wildcatters had been paying for decades for the right—which they almost never exercised—to probe for trapped pockets of underground methane. Given the region’s historic experience with vertical gas wells, which were low impact, few in number, and almost never put into production, a visit from the landman didn’t set off alarm bells for George. (Some lessors complained that gas companies intentionally glossed over how horizontal drilling would be different—i.e., far more disruptive for lessors and far more lucrative for the industry.) George ran the lease, which offered $12 per acre for the first year and $4.50 per acre for the remaining four years (for a total payout of $2,360), by his lawyer. He was told it was a good deal. George smirked. “How many times do you think I’m ever gonna hire that lawyer to do anything for me again? It’s between zero and none.”

Sociologist Stephanie Malin and colleagues argue that leasing disempowered lessors like George, “precisely because negotiations occurred privately between industry representatives and individual landowners.”8 Most lessors, including people with counsel, lacked full information on what they could bargain for. The structure of private land leasing played into the industry’s hands. In most instances, gas company representatives were able to convince landowners to lease through one-on-one negotiations—situations in which the industry held all the cards. It never occurred to George that he could have collectively bargained with his neighbors, as the Crawleys did; as a result, he arguably got fleeced.

When I asked George if he felt cheated, though, he responded, “I can’t holler.” He noted that he “made a nice chunk of money” for the pipeline under his field. More than the gleaming Ford Explorer SUV and the $8,000 Scag riding mower, what mattered most to him about the windfall was being able to start a college fund for his granddaughter Maddie. Her portrait—knees tucked close to her chest, her blond hair framing a shy teenager smile—was the only tabletop adornment in his living room. Tearfully glancing at her photo, George managed to blurt out, “I love that girl to pieces,” before momentarily going silent to collect himself. “She deserves everything.”

George hoped to be able to give his granddaughter everything in the near future. I stood with him on a scorching July afternoon in 2013 as he supervised the workers preparing to bring his moneymakers—that is, the six gas wells in his backyard—online (i.e., connected to the pipeline). Despite the heat, the roughnecks were required to wear thick fire-retardant suits. “Ugh,” George commented, “I’d rather go pick shit with the chickens than wear one of those damned things!” As was his wont, George chatted up the nearest hard hat, who happened to be a field analyst who told us he recently migrated here from the oilfields in Wyoming. “We’re hopin’ for some pretty good wells here,” the man remarked nonchalantly. “You are?” George asked excitedly, rubbing his hands together as if caressing an imaginary stack of royalty checks. “I am too!” he exclaimed, before becoming overwhelmed by belly laughs. The worker readily indulged George’s fantasy. Based on the wellheads’ high-pressure-gauge readings, he had “a feeling they’re gonna be some pretty good ones.”

Once the man walked away, George began chuckling as he imagined life as a “shaleionaire.” He told me he would be the lousiest rich person alive, because he would give it all away. In addition to planning to pick up the tab for his granddaughter’s college tuition and buy her a car for graduation, he wanted, he said, “to be able to take care of my brothers and sisters that were born and raised here.” On second thought, George conceded that he didn’t plan to give all the royalty money away. “I wanna protect my home as much as possible.” Materially, that meant remodeling his careworn kitchen and installing a new roof—ideally, a metal one. Legally, that meant rewriting his will so that part of his new-found fortune stayed with the property, meaning that his daughter would forfeit any claim to her inheritance if she attempted to sell or transfer ownership of the estate. George also entertained more fanciful visions, like constructing a pond in his field “big enough to put two islands in,” with “an arch bridge going from one to the other with a flowering cherry [tree] in the middle of each one,” and like buying out his neighbor and bulldozing the house, so he didn’t have to look at it.

When the money, such as it was, began rolling in, George had some fun. He purchased a kayak and a large passenger van to transport it, so that he didn’t have to bother attaching a trailer to his SUV. On one visit, I found his table littered with ads torn out of magazines for resorts in the Poconos, casinos in Atlantic City, and even a fourteen-day cruise in Alaska. He had taken to purchasing decorative plates painted with American flags and animals like deer and eagles—which he displayed on counters, sills, and almost any other flat surface he could find throughout the house—and to collecting limited-edition Monopoly board games (the crown jewel, which he said he picked up on a day trip to Corning, New York, with his granddaughter, was gold-foil-stamped and constructed of mahogany). And he sported a fancy new watch that he had seen on TV and had to have. ‘They said the list price was $1,500, but I got it for a little more than $500.’*

It took some time to get his kitchen remodeled, in part because George acted like a self-described “pain in the ass.” Seeming to relish a rare opportunity to play the part of a bigwig, George gleefully recounted how he fired two contractors for not following his detailed specifications (he said one bought the wrong sink; another “hung the cabinets too darn high!”). The kitchen was finally completed in the fall of 2016, and it was such a total transformation that it could have been featured on Extreme Home Makeover: all stainless-steel appliances, including (finally) a dishwasher; wraparound stained solid-wood cabinets; marble countertops; an embossed ceiling that imitated the tin ceilings of old; and, of course, a new tiled floor to replace the duct-taped linoleum. The bathroom, whose origin as an outhouse attached to the kitchen meant that it was perennially dank, was also gut renovated. Its newly installed cedar paneling (including on the tub), wall-to-wall carpet, and insulated walls emanated both figurative and literal warmth. The showpiece, which George couldn’t wait to present to me, was a walnut bay window installed in the laundry room, off the back of the kitchen. Previously, he had no view of his backyard from the kitchen. Its three panes now framed an archetypal rustic scene: the lush green expanse of his lawn extending toward distant tree stands, with the misty mountains looming in the background. (He shrugged off the occasional odor of industrial chemicals like benzene that wafted in from the well pad through his window, noting that the problem was easily solved by jamming rags between the window and the sill.) ‘They were gonna do that window with pine,’ George said with disgust. He went on, ‘Now, pine would’ve only set me back $800, and this cost ten times that. But you ain’t doing my window with pine! Over my dead body!’

Though the living room was relatively unchanged, George did make one significant alteration as an ode to his mother: he replaced her faded, flaking wallpaper mural. The new mural, also a fall scene that took up the entire wall, consisted of dozens of painted vinyl squares glued together. George had actually purchased it four years earlier with his pipeline bonus money, but it sat rolled up behind his loveseat for want of the additional funds required for a professional installation. Knowing that I used to rib him about the unfinished job, George proudly sat for a portrait session with the mural as a backdrop when I visited him in the fall of 2017 with a photographer. Although the declining productivity of his wells, along with the bottoming-out of natural-gas prices, reduced George’s monthly royalties from five figures to four figures in less than a year, he fulfilled his dream of surprising his granddaughter with a new Ford Escape for her high school graduation, in 2017. He joyfully recounted the story of driving Maddie to the dealership under the pretense that his own car needed repairs, and then parking by the white SUV and announcing, “It’s yours!” George sold his two-year-old passenger van to finance the $28,000 cash purchase, which was a reminder that his newfound wealth was finite. Yet the fact that George had grown accustomed to paying in full up front for big-ticket items was an indicator of how privileged fracking had made him. One way he expressed his gratitude was by donating $500 worth of food and new clothes to a shelter on Thanksgiving; he said he made his granddaughters tag along, ‘to show them how to be charitable.’

Thanks to land leasing, George had finally broken free of a lifetime of relative deprivation. Though he was hardly alone in turning to the fracking lottery in an effort to escape hardship, George certainly made out better than most. Of course, those who didn’t own any mineral estate couldn’t participate in the fracking lottery. What’s more, in some places—especially Billtown—tenants faced rising rents, and in 2012 residents of the Riverdale Mobile Home Park were forced out after a company bought the land in order to construct a water withdrawal site. In the rural places of Lycoming County where most drilling occurred, though, almost everyone owned rather than rented (in Gamble Town- ship, where George lived, only 10 percent of the population were rent- ers).9 And, unlike in parts of the Midwest, almost all the landowners here held the mineral rights. Everyone who leased got something, but it’s a minority, it seems, who wound up with life-changing money.10

The fact that few lessors hit the jackpot, while most of them experienced some degradation in their quality of life, has led some analysts to conclude that petroleum companies exploited the vulnerability of marginalized small-scale farmers and homeowners. Like the disproportionately impoverished group of people who buy lottery tickets, the thinking goes, many lessors felt they had little choice but to sign, because leasing was their only potential escape from economic insecurity. Some scholars call scenarios like this “environmental blackmail,” because, they argue, residents must choose between their health and their livelihood.11 In addition, fracking introduced new inequalities among neighbors: members of the Shaner clan earned enough royalties to endow college funds and hire maids; the Crawleys, just down the hill, received just a $7,000 one-time bonus, which came at the expense of their fresh-water supply (now laced with methane from a neighbor’s gas well). The Department of Environmental Protection shut in the faulty well, foreclosing the possibility of it generating royalties for the Crawleys.

As for his own misfortune, Tom Crawley resignedly concluded that “accidents happen” and optimistically pointed to the Shaners, implying that he could just as easily have been in their shoes. His neighbor Doyle Bodle, whose water was also impacted by drilling, reiterated that most lessors “are not having any problems,” and that even people not impacted by drilling can wind up with bad water, suggesting that geology itself shouldered much of the blame. “Losers” like Tom and Doyle saw themselves primarily as victims of bad luck—in particular, of an unfortunate location—rather than of bad actors or systemic inequity. And the fact that topography and luck largely determined the winners appealed to residents’ egalitarian sensibilities. Anyone could win, regardless of occupation, education, or wealth. In this way, private mineral ownership, a peculiarly American idea, made fracking compatible with the American Dream-even as it created new socioeconomic disparities, exposed landowners to significant environmental risks, and oftentimes left lessors holding the bag.

***

* Throughout this book, double quotation marks signify that the utterance was audio-recorded and transcribed verbatim. Single quotation marks represent my reconstruction of dialogue based on handwritten notes. I make this distinction to signal that utterances inside single quotation marks may be less reliable than those inside double quotation marks, as it seems almost impossible to capture speech verbatim with notes, even if they are written contemporaneously.

7. While it is plausible that wealthier and more educated residents were advantaged in negotiating lease and royalty payments, the biggest predictor of whether or not one hired a lawyer was not socioeconomic status but the size of one’s property (small landowners surmised that lawyer fees would eat up most of their leasing bonus). Dylan Bugden and Richard Stedman’s survey of lessors in northeastern Pennsylvania lends additional support to my claim that socioeconomic status did not play a significant role in determining outcomes in the fracking lottery. They find that “outcomes tend to vary by firm-specific rather than sociostructural factors.” See Dylan Bugden and Richard Stedman, “Rural Landowners, Energy Leasing, and Patterns of Risk and Inequality in the Shale Gas Industry,” Rural Sociology 84, no. 3 (2019): 459–88

8. Stephanie A. Malin et al., “The Right to Resist or a Case of Injustice? Meta-Power in the Oil and Gas FieldsSocial Forces 97, no. 4 (2019): 1811–38.

9. “Gamble Township, Pennsylvania Housing Data,” TownCharts.com, accessed July 15, 2020.

10. Public data only allow estimates of the total amount of money of leasing bonuses and royalties paid out to lessors by oil and gas companies, not how much each lessor received (see, e.g., Timothy Fitzgerald and Randal R. Rucker, “US Private Oil and Natural Gas Royalties: Estimates and Policy Relevance,” OPEC Energy Review, 40, no. 1 (2016): 3–25). Anecdotally, few if any journalistic reports of shale communities turn up more than a few local instances of shaleionaires. See, e.g., Tom Wilber, Under the Surface: Fracking, Fortunes, and the Fate of the Marcellus Shale (Ithaca, NY: Cornell University Press, 2012); Andrew Maykuth, “Shale Gas Was Going to Make Them Rich. Then the Checks Arrived,” Philadelphia Inquirer, December 21, 2017.

11. Stephanie Malin, “There’s No Real Choice but to Sign: Neoliberalization and Normalization of Hydraulic Fracturing on Pennsylvania Farmland,” Journal of Environmental Studies and Science 4 (2014): 17–27.

***

Excerpted from Up to Heaven and Down to Hell: Fracking, Freedom, and Community in an American Town. Published by Princeton University Press.

Switch at Birth — But How?

From left: Rita and Ches Hynes; Mildred and Donald Avery / Jessie Brinkman Evans for The Atavist

This is an excerpt from The Atavist‘s issue no. 113, “The Lives of Others,” by writer Lindsay Jones. In remote Newfoundland, a search for answers about a series of baby mix-ups leads to a woman known as “Nurse Tiger.”

Lindsay Jones | The Atavist | March 2021 | 5 minutes (1,556 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.

Rita Hynes lugged her pregnant body up the rural hospital’s wooden steps. It was the night of December 7, 1962, and her rounded belly tightened with each contraction. At just 20, Rita knew what she was in for. She had given birth two years prior, to a girl. Rita wasn’t married then, so the priest from her Catholic fishing hamlet on the southern coast of Newfoundland had snatched the infant from her arms and slapped Rita across the face. The baby would be raised by an aunt and uncle.

Rita, a slip of a woman, with blond hair and a rollicking laugh, soon became pregnant again by the baby girl’s father, a burly, blue-eyed fisherman named Ches Hynes, who was 11 years her senior. The couple married in the summer of 1961, the same day their son Stephen was born. But their happiness was short-lived: Stephen died as an infant, in his sleep.

Now Rita was pregnant for a third time. At the hospital, she felt the intensifying crests of pain—at first bearable, and then searing as the night wore on. Just after midnight, she heard the cries of her eight-pound baby pierce the air. A boy! She named him Clarence Peter Hynes, after his godfather, who was a close friend of her husband’s, and her brother, who had died in a fishing accident. Clarence was deposited in the hospital’s nursery and tucked into a bassinet, while Rita dozed in the women’s ward. This time, she surely hoped, no one and nothing would take her baby.

Clarence, whom everyone calls Clar, grew up in a fishing town, St. Bernard’s, perched on the edge of Newfoundland’s Fortune Bay. He was the first in a steady stream of infants to arrive at the Hyneses’ home, a small taupe bungalow on a hill overlooking the quay, with its fish sheds painted the bright colors of jelly beans. As a youngster, Clar watched out the kitchen window for boats steaming into the crescent-shaped harbor and then furiously pedaled his bike down to the wharf. He earned $4 an hour unloading and weighing nets teeming with squid and silver cod.

Clar slept in a top bunk in a room he shared with his brothers. They were fairer than he was—Clar had a toasty complexion and a thick head of dark hair. When they wanted to torment him, his brothers called him Freddy Fender, after the Mexican-American musician. He grew to become a local heartthrob, with a chiseled brow and lean, muscular frame. Clar was a natural athlete who excelled at hockey and cross-country. Rita, a typical hockey mom, banged on the glass during his games and leaned over the railings to yell at the referees.

At 16, when Clar left home for Ontario to work on the Canadian Pacific Railway, Rita cried for days. She knelt on a chair at the kitchen window, clutching her rosary beads and praying to God to bring her son back. She kept all the letters he sent her in her closet. When Clar did return, driving his navy blue Chevy Camaro into the village after many months away, the teenage girls of St. Bernard’s swooned. “Oh, Clar is so handsome!” his sister, Dorothy, remembered hearing again and again—her friends were always talking about her big brother.

Clar was 24 when he met a woman named Cheryl at a motel bar in Marystown, farther down the boot-shaped peninsula from where he grew up. Clar had an on-and-off girlfriend at the time, but when he saw Cheryl he was smitten. With pretty, bow-shaped lips and curly blond hair, she was the belle of the bar. She’d recently moved back to Newfoundland from the Toronto area, where she’d worked as a hairstylist. Cheryl noticed Clar looking at her. She didn’t normally date guys from rural fishing communities, or “down over the road.” They were a hard bunch. But as she and Clar talked over beers and glasses of Screech rum and 7Up, Cheryl found him attentive and kind. They danced and chatted the night away. She didn’t want it to end.

They were married two years later in Marystown’s white, steepled Anglican church. The ceremony was packed to the gills with family. Rita wore a royal blue dress with puffed sleeves, and her husband Ches a dark gray suit. They were thrilled to see Clar tie the knot.

Rita was diagnosed with late-stage ovarian cancer a few years later, at 50. Clar nursed her as a mother would a baby. He held her and rocked her in the Hyneses’ old bungalow on the hill, making sure to face a window on the ocean so she could see the waves. Rita stayed with Clar and Cheryl at their home “in town,” as everyone calls Newfoundland’s capital city, St. John’s, during the futile treatment she underwent. Clar spoon-fed his mother bowls of fish and potatoes. He spent day after day with her right up until the end, so she would never be alone.

Five years after that, lung cancer took Ches.

Clar and Cheryl built a life together in St. John’s, raising three children of their own. When the fishery that had sustained generations of islanders collapsed, Newfoundland’s economy reoriented itself around the offshore oil and gas business. By 2014, Clar had a job as a welding foreman at Bull Arm, one of the industry’s major fabrication sites, where employees were building an oil platform that would eventually be towed out to sea.

That December, 52 years to the day after Rita brought him into the world, Clar overheard a woman in the hallway just outside his office sing out to a coworker, “It’s Craig’s birthday!” The woman’s name was Tracey Avery, and she was a cleaner at Bull Arm. She was talking about her husband, who also worked at the site. How funny, Clar thought. “It’s my birthday, too,” he said with a laugh.

“Yes, b’y,” Tracey replied. (B’y is pronounced “bye”—the Newfoundland expression is one of surprise, like “oh really?”) “How old are you?”

When Clar told her his age, Tracey’s next words came tumbling out: “Where were you born?”

“Come By Chance Cottage Hospital,” Clar said.

Tracey stood stock still for a second, her mouth agape. Then she ran, leaving her mop and cart behind. Clar shivered.

In that moment, a secret began to worm its way into the light: Another child had been taken from Rita Hynes—and she wasn’t alone.

On ‘the rock,’ as Newfoundland is affectionately known, your bay and your bloodline still define who you are—they are the first things people ask about when they meet you.

Depending on how you look at it, the stirring of this long-buried truth was sheer coincidence—one of those wild things that just happens—or it was inevitable, born of the quiddity of place. Newfoundland, the island portion of the sprawling Canadian province known as Newfoundland and Labrador, is a massive triangular rock in the Atlantic Ocean, colonized centuries ago for its fishing grounds. It has a rugged coastline, with hundreds of communities nestled into crooks, crannies, and coves. Some towns have blush-inducing names such as Heart’s Desire, Leading Tickles, and Dildo, and each is its own remote kingdom, fortified by rolling bluffs. Extended families are vast and tightly bound. For a long time they had to be. In such an austere place, it was a matter of survival. Today on “the rock,” as Newfoundland is affectionately known, your bay and your bloodline still define who you are—they are the first things people ask about when they meet you.

Getting anywhere along Newfoundland’s 6,000 miles of mountainous coast has always been a challenge. In the early 20th century, people in many of the island’s approximately 1,300 outports—the local term for fishing towns—had limited access to health care. Cottage hospitals, strategically located to serve dozens of outports at once, were intended to eliminate unnecessary death and suffering. They were a place to have your appendix out, get stitched up after an accident, or give birth and recover under the care of qualified doctors and nurses. They heralded a new dawn for Newfoundland. According to Edward Lake, a nurse and health administrator who worked in cottage hospitals and later wrote the definitive account of their history, they were the start of the most advanced rural health care program North America had ever seen, forerunners to Canada’s publicly funded national system.

The first seven cottage hospitals opened in 1936. One was located in the village of Come By Chance, which had been given its curious name by English colonists. As the story goes, in 1612, white explorers came ashore in one bay, only to discover a well-worn path to another bay on another coastline. The path had been cut by the indigenous Beothuk people. (The Beothuk were wiped out in the 19th century by the encroachment of white settlers.) The route led to the mouth of a river flush with salmon. It was a fortuitous find, which perhaps explains why the colonists later christened the settlement they built there Come By Chance. More than three centuries on, the village would prove a prime spot for a cottage hospital, with more than 50 outports close by.

The cottage hospitals were cookie-cutter clapboard buildings designed to be inviting. From the outside they looked like quaint residences. Strangely, in Come By Chance, the hospital was built the wrong way round, with its back to the road. For those inclined to superstition, the error might seem like an omen—a foretelling of bigger mix-ups to come.

 

Read the full story at The Atavist

When Refugee Families are Separated, Women Carry the Burden

Author photo by Jill Filipovic, used courtesy of St Martin's Press.

Ty McCormick | Beyond the Sand and Sea, One Family’s Quest for Country to Call Home | April 2021 | 3,518 words (20 minutes)

A few weeks after Maryan gave birth to her first son, Mohamed, word came from Dadaab that her parents and younger siblings were going to America. The Ashraf had been given priority for resettlement by the UN, and thousands of people seemed to be were leaving at once. Believing her brief marriage to Yussuf had run its course, Maryan took the first bus back to Dadaab with little Mohamed in tow. She had yet to tell her parents about her husband, in part because there was part of her that always doubted their marriage would survive. Now there was no hiding the fact that she was married and a mother. Sharif and Kaltuma would never approve of her plan to leave without Yussuf. But if they were going to America, she was going too.

The sight of Maryan with an infant child was a shock to her parents. Her mother broke down in tears, and she and Sharif both begged her to reconcile with Yussuf. “Think of the damage you are doing to our reputation,” they said. But Maryan was adamant that she was done with him. A day or two before the family was scheduled to begin the vetting process for resettlement, though, Yussuf showed up in Dadaab demanding to know why Maryan had left with their son. He had heard from family back in Moyale that the UN was taking her to America. Suddenly, the wife he had abandoned was his ticket to a better life.

Initially, Maryan rejected the idea out of hand. But her parents pushed and cajoled her. Divorce was simply out of the question as far as they were concerned. It wasn’t just taboo; it was unspeakable, a religious and moral failing that she would take to the grave. Leaving Yussuf behind, she realized, would wound her parents in a way she could never repair. What’s more, she harbored her own feelings of guilt at having agreed to marry him. You picked this guy, she thought. You can’t just walk away.

Reluctantly, Maryan agreed to give her marriage a second chance. She and Yussuf hadn’t had a legal wedding in Moyale, so they organized a hasty one at a mosque in Ifo in order to obtain the marriage certificate they would need to be resettled as a family. A sheikh named Jawad Abdi presided over the ceremony, and his signature is affixed to the bottom of a handwritten document from that day, specifying a dowry of “a cow of three years.” Sharif’s signature appears as a witness, above a statement clarifying that the improvised certificate, written in English and in Arabic, “should serve as proof of said marriage because currently marriage certificates are out of stock.”

Once they were officially wed, Maryan and Yussuf were given their own resettlement case with baby Mohamed, instead of remaining attached to Sharif, Kaltuma, and the rest of their children. That fateful decision, made to accommodate Yussuf, would end up splitting the family in two for years to come.

* * *

Maryan came off the plane in Phoenix carrying one-year-old Mohamed and a white plastic bag stamped with the blue insignia of the International Organization for Migration. In addition to immigration and work authorization papers, the bag contained a four-by-six-inch card bearing the lyrics to “The Star-Spangled Banner.” Unlike the generation of Somalis that would follow her, including her three youngest siblings, Maryan hadn’t grown up dreaming of the United States. The words “land of the free and home of the brave” held no meaning for her. All she knew was that she wanted a better life for herself and for her family. That meant being more than a mother and a wife, more than a woman for whom a suitable dowry was a cow of three years.

Their journey had lasted more than forty-eight hours, taking them from Nairobi to New York to Houston and finally on to Phoenix. Neither she nor her husband had ever seen an airplane up close, let alone ridden on one. Now as they exited the terminal at Sky Harbor Airport, Maryan suddenly froze in terror. In front of her was a glass-encased stairway that appeared to be collapsing. The steps were grooved and sturdy-looking, but they fell away, one after the other, each time she went to step on them. It took a moment for Maryan to grasp what was happening. The concourse had been relatively empty when they arrived at the top of the escalator, but now a small line had formed behind them and people were anxious to move.

“It’s okay, you can walk on it,” came the gentle voice of a woman behind her. The woman must have guessed they had just arrived from somewhere far away—Maryan in her black hijab looking fearful and confused, and Yussuf at a loss as well.

The escalator wasn’t the only thing about their new life that seemed odd. When Maryan would ride the Number Eleven bus with baby Mohamed, people would fawn over them and say what a cute daughter she had. It wasn’t until she made friends with a few Americans that she figured out the source of the misunderstanding: children’s clothes were gendered here, and Mohamed’s light pink pajamas were throwing people off. The grocery store was another locus of confusion. For months after they arrived, Maryan kept buying things by mistake because the pictures on the labels were misleading. A packet of tea bags, for instance, showed huge cubes of sugar, which was what she had intended to buy. Nothing was packaged this way back in Kenya. You bought things loose, not in bags or plastic wrappers. But Maryan was curious and outgoing by nature, and she didn’t mind learning by trial and error. In fact, she bought lots of things on impulse, without even trying to guess what they were. A box of shiny red strawberries jumped out at her, so she bought them on a whim, only to recoil in disgust at what to her was their strange, sour taste.

Many new arrivals in Tucson who had come from Dadaab, including Yussuf, had never lived outside of a small rural village. Some of the children had never seen the outside of a refugee camp. Maryan was unique in that she had lived alone in Nairobi. She also spoke decent English, and was used to a level of independence that was unusual in conservative Somali communities. This was a source of constant friction in her marriage, but it was also a font of opportunity in America. Because she could read and translate, she was an invaluable resource to the dozens of refugee families living in the area, the person inevitably called on to resolve all manner of misunderstandings with landlords, employers, and the police. It wasn’t long before the International Rescue Committee started hiring her for little jobs assisting other new arrivals, translating at job interviews or helping decipher training videos. She liked helping other refugees, and she could make as much as $75 for a single day of work.


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With the help of the International Rescue Committee, Maryan soon got a full-time job at Jack in the Box, cutting tomatoes and iceberg lettuce for Caesar salads. The pay was only $5 per hour, but the work was more regular than the translating jobs and the restaurant was close enough to the apartment complex that she didn’t have to waste money riding the bus. There were a few mishaps in the beginning, like the time she called a colleague fat and caused her to break down in tears. In Somali culture, girth signifies wealth, so she hadn’t anticipated this reaction. But on the whole, things went smoothly on the food-prep line. She made friends with her manager, a young woman named Nancy Rodriguez who was also a new mother in a tempestuous relationship. The two women liked to gossip and often confided in each other when things weren’t going well at home. Sometimes, Nancy would knock quietly on Maryan’s window at 3 a.m. or 4 a.m. Maryan would slip out of the house, careful not to wake Yussuf, and zoom off with Nancy in her silver Honda Civic. The two of them would drive for hours before the sun came up, talking and listening to music. Eventually, Nancy started letting Maryan drive, teaching her to maneuver along quiet back roads even though she didn’t have a license.

Yussuf was having a different experience in his new country. Much less comfortable than his wife in their new surroundings, he was even more determined to control her than he had been in Kenya. The International Rescue Committee had helped him get a job, too, first as a night-shift cleaner at the Hilton and later as a landscaper. But the work was hard and he was constantly confused and embarrassed. Unable to speak English and unwilling to learn, he took his frustrations out on Maryan. He disliked that she worked, and he hated that she thought it earned her a measure of autonomy. The way Maryan saw it, she brought in more than half of their income, so she should have at least half the say in how the household was run. Yussuf disagreed, often forcefully. Over time, their fights grew even more ferocious. She would yell and cry, and he would slam his fists against the tables and the walls. Sometimes, he would physically block her from storming out into the hall. More than once, the neighbors called the police. But there was part of Maryan that felt sorry for Yussuf, part of her that knew she couldn’t leave him in a place where he couldn’t survive on his own. Each time the cops came, she kept her mouth shut.

Yussuf seemed threatened by Maryan’s prominent position in the community. He grew incensed when people he didn’t know called the house asking for her, and more than once he ripped the phone out of the wall. He also tried to sabotage Maryan’s friendships by spreading rumors that she had neglected their son. Once, when he and Maryan were meeting with an employment counselor at the International Rescue Committee, he announced that he had forbidden her from working outside the home. The counselor calmly reached across the desk and lifted up baby Mohamed, who had been swaddled in Maryan’s arms, handed him to Yussuf and told him to take the bus home. “You can control your child,” she said flatly, “But in America, you can’t control your wife.” Enraged, Yussuf stormed out of the room with the baby, a torrent of insults pouring out of his mouth in Somali. “You just follow the cadaan,” he sneered at Maryan, using the Somali word for whites. “You just follow their rules, and you don’t respect our religion.”

* * *

Maryan began to dread being in the apartment. Whenever Yussuf was there, she would find an excuse to go somewhere else with the baby, whether it was to the Reid Park Zoo with Nancy, who had a yearlong entry pass, or to Chuck E. Cheese with other friends from work. But the bond between her and Yussuf wasn’t completely severed, and feeling lonely and isolated, she sometimes let herself be drawn back into his arms. A little more than a year after they arrived in Arizona, she realized she was pregnant again.

Ambia was born with jaundice, a common blood disorder that made her skin appear slightly yellow. “You have a cursed child,” Yussuf said, when he first laid eyes on her at the University of Arizona Medical Center. The doctors said she would be just fine, but that Ambia needed to stay overnight for special therapy under a halogen light. They discharged Maryan, though, and told her to go home with Yussuf, a notion that struck her as preposterous. She wasn’t about to leave her baby in the care of people she didn’t know to be treated with a light machine she didn’t trust. In Kenya, no mother would leave her newborn at the hospital, but here the impassive white robed physicians clearly expected her to. She broke down crying, and implored them to let her stay. Eventually, they relented, and Maryan and Ambia were given a room together for the next three nights.

The counselor calmly reached across the desk and lifted up baby Mohamed, who had been swaddled in Maryan’s arms, handed him to Yussuf and told him to take the bus home. “You can control your child,” she said flatly, “But in America, you can’t control your wife.”

A few weeks later, when they were back home at the apartment on North Alvernon Way, a bill arrived in the mail. When Maryan read it, she let out a gasp: $16,000, for the care she and her daughter had received. It was more than a year’s salary at Jack in the Box. A knot forming in her chest, she dialed the billing department, unsure of what exactly she would say. But after she gave her patient code and verified her date of birth, the woman on the other end of the phone sounded surprised Maryan had called. “I’m showing no balance owed,” she said. “It’s been paid in full.”

Maryan never found out who paid that bill. She wondered if maybe it was the employment counselor from the International Rescue Committee, a woman whose name she can’t recall but who was always kind to her. Two years later, after her second daughter, Najma, was born, Maryan got up the courage to ask the counselor if she had been the guardian angel who had wiped out her debt. The woman scoffed at the suggestion. “I don’t have that kind of money,” she said.

But the counselor did have ideas about how Maryan could earn more money of her own: by pursuing a GED. With a high school equivalency certificate, a whole range of new job opportunities would open up—ones that paid better than $5 per hour and wouldn’t leave her clothes smelling like fried food.

Soon, Maryan was spending several hours a day at Pima Community College while an elderly Somali woman in their apartment building looked after the children. Maryan liked being back in school, but in the beginning, she was bewildered by her classmates. They put their feet on their desks and ate food during class. Acting like that at Abdul Aziz Primary would have earned you a beating. Were these students not afraid of the teachers? Did the teachers have no self-respect?

One of her courses at Pima was English as a Second Language, or ESL. Most of the assignments were simple worksheets that involved identifying errors in grammar or spelling. But the worksheets were supposed to serve a secondary function as well: introducing foreigners to American traditions and customs. Tailgating at sporting events was the subject of one memorable ESL worksheet, which advised students that the boozy tradition was “a fun part of college life and for sports fans in Illinois.” Maryan often found herself giggling quietly over assignments like these, which struck her as random to the point of absurdity. They weren’t even in Illinois, she thought to herself. And why on earth would she ever need to know about drunken college football parties?

Six months later, Maryan had her GED. Not long after that she got a job at St. Joseph’s Hospital, mopping up the surgical theater after operations. The pay was better than at Jack in the Box, and she was able to afford a drivers’ education course and eventually a used car. She was also able to send more money home to her parents. There had been all manner of expenses to cover, including tuberculosis medication for her father, whose health had taken a turn for the worse. Lately, she had also noticed additional charges on her credit card statement for e-books that her brother Asad had downloaded from Dadaab. The books were expensive, certainly more money than she would have spent on small luxuries for herself. But remembering the monotony of life in Dadaab, she was glad her brother had become a passionate reader. She hated to think of him wiling away his days in the heat, waiting in humiliating food distribution lines, and cooking over a fire pit. Books seemed to light him up, and thinking of him that way made her happy.

The two of them corresponded more frequently as the years wore on and Asad matured into a reserved and sensitive young man. She would create email and social media accounts for him so they could communicate more easily, then give him the log-in credentials over the phone. Sometimes, she would get email alerts warning that someone was trying to access her accounts from abroad. Those emails always made her smile.

She had come to think of Asad not just as a little sibling in need of direction, but as a partner in caring for their parents—she as the breadwinner in Arizona and he as the caregiver and problem-solver at home. Now instead of talking to Sharif about difficulties with doctors or the UN, it was always Asad she coordinated with. His was a comforting voice on the other end of the phone, and as time passed she felt herself leaning on him as well. When he was young, she had tried not to burden him with her own struggles. But the worse things got with Yussuf, the less of her suffering she was able to hide. It was strange opening up to someone she remembered only as a small child, someone whom fate had taken away from her and whose life was now so different than hers. They existed in totally separate universes, and yet there were things that only he could understand.

* * *

Maryan had another phone besides the one she used to call home with her $20 calling cards. It was slim and black and its existence was a closely guarded secret. In the contacts, there was only a single number saved: 911.

The emergency phone had come from a domestic violence counselor. Because Maryan had high blood pressure and crippling anxiety, her doctor had come to suspect she was in danger at home and referred her to a shelter for battered women. Even before that Maryan had thought about running away with her children, but she didn’t know who she could trust or where to turn for help. Yussuf had succeeded in turning much of the refugee community against her, spreading vicious rumors about his wayward “Western” wife who thought she was better than other Somalis and didn’t value their traditions. Even the idea of domestic violence was viewed with suspicion by many of the refugees she had helped translate for over the years. “If you are married and your husband beats you up, you have nothing to say because he’s your husband,” was how she summed up their thinking.

She hated to think of him wiling away his days in the heat, waiting in humiliating food distribution lines, and cooking over a fire pit. Books seemed to light him up, and thinking of him that way made her happy.

Yussuf never hit Maryan, but his constant emotional and psychological abuse had slowly broken her down. She would wake up in the middle of the night, heart racing, unable to bear the thought of another day with him. Even so, she felt paralyzed. Faith had always been important to her, and while divorce was technically allowed in Islam, it would make you an outcast. There was part of her that felt she had a religious duty to stay in the marriage as long as her husband did. And nothing had changed her belief that leaving Yussuf would crush her parents and forever change the way they looked at her. Running away to avoid getting married had been one thing. Divorcing the father of her three children would be quite another. “It felt like there was something holding me down that was heavier than me,” she recalled. “Like I was in the ocean and the waves were just overpowering me.”

But the situation had become untenable. She had started breaking down in public, crying in front of coworkers and in the middle of shifts at the hospital. She had missed work after one particularly painful fight, and then she had missed another day and another. Eventually, her boss had let her go. Yussuf had finally gotten his wish: a wife without a job.

Not long after that Maryan found herself alone on a ledge, looking down at what seemed like her only avenue of escape. As Yussuf pounded angrily on the locked door of their apartment, threatening to break it down, she teetered on the edge of a sliding-glass window, the smooth pavement of the parking lot beckoning from twenty feet below. She had reached the limit of what she could take. But as she contemplated stepping out of her life, it occurred to her that Yussuf probably wouldn’t care if she died. The thought of his indifference filled her with rage, and she pulled back from the ledge. Suddenly, she knew what she would do, and it was something that would hurt Yussuf, too. The next day, she sold her car and bought four plane tickets to the farthest place from Arizona she could think of that was still in the United States. Then she picked up the phone to tell her parents she was leaving Yussuf and moving the kids to Seattle.

Excerpted from Beyond the Sand and Sea by Ty McCormick. Published by St.Martin’s Press.

Why Bumblebees Love Cats and Other Beautiful Relationships

Author photo courtesy of Fondazione Palazzo Strozzi, Florence. Photo by Alessandro Moggi.

Stefano Mancuso | The Nation of Plants | March 2021 | 3,311 words (19 minutes)

I am sure that many of the erudite readers of this little book know On the Origin of Species by Charles Darwin inside and out. If there is someone who still has this gap in their education, you are urged to fill it without any further delay. Darwin’s book is fundamental for understanding how life works. And it is surprising to think how this book, which literally changed the history of the world, is actually only a summary of the countless observations that Darwin gathered for decades throughout the scientific disciplines and throughout the world in support of his theory of the evolution of living species. His plan, in fact, was to write a colossal and minutely detailed work that was meant to report all the fruits of his decades of research. It would be a work invulnerable to any and all criticism.

As is well known, things did not work out that way. Alfred Russel Wallace’s announcement that he had arrived at Darwin’s same conclusions regarding evolution induced Darwin to change his plans and summarize in Origin his most brilliant and most evidentially supported deductions, leaving the rest of the material for subsequent elaboration. Nevertheless, the enormous corpus that he was working on did not go to waste. On the contrary, the first two chapters of his magnum opus, which was supposed to be entitled simply Natural Selection, became the two volumes of The Variation of Animals and Plants Under Domestication, and much of the rest of the material was readapted in the elaboration of his later works. In any event,
in the third chapter of On the Origin of Species, dedicated to the famous “struggle for existence” that is the dominant motif of the whole book, Darwin tells a marvelous story of relationships. This story is essential for understanding both the bonds between living beings and how difficult it is to imagine the consequences of intervening in those relationships.

Darwin writes: what animals could you imagine to be more distant from one another than a cat and a bumblebee? Yet the ties that bind these two animals, though at first glance nonexistent, are on the contrary so strict that were they to be modified, the consequences would be so numerous and profound as to be unimaginable. Mice, argues Darwin, are among the principal enemies of bumblebees. They eat their larvae and destroy their nests. On the other hand, as everyone knows, mice are the favorite prey of cats. One consequence of this is that, in proximity to those villages with the most cats, one finds fewer mice and more bumblebees. So far so clear? Good, let’s go on.

Bumblebees are the primary pollinators of many vegetable species, and it is common knowledge that the greater the amount and the quality of pollination the greater the number of seeds produced by the plants. The number and the quality of seeds determines the greater or lesser presence of insects, which, as is well known, are the principal nutriment of numerous bird populations. We could go on like this, adding one group of living species to another, for hours on end: bacteria, fungi, cereals, reptiles, orchids, would succeed one another without pause, one by one, until we ran out of breath, like in those nursery rhymes that connect one event to another without interruption. The ecological relationships that Darwin brings to our attention tell us of a world of bonds much more complex and ungraspable than had ever previously been supposed. Relationships so complex as to connect everything to everything in a single network of the living.

There is a famous story along these lines told for the first time by the German biologists Ernst Haeckel and Carl Vogt. As the story goes, the fortunes of England would seem to depend on cats. By nourishing themselves on mice, cats increase the chances of survival of bumblebees, which, in turn, pollinate shamrocks, which then nourish the beef cows that provide the meat to nourish British sailors, thus permitting the British navy—which, as we all know, is the mainstay of the empire—to develop all of its power. T. H. Huxley, expanding on the joke, added that the true force of the empire was not cats but the perseverant love of English spinsters for cats, which kept the cat population so high. In any event, underlying the joke is the simple truth that all living species are connected to one another in some way or other by relationships, visible or hidden, and that acting directly on one species, or simply altering its environment, can have totally unexpected consequences. Darwin tells us that trying to imagine the final consequences of any alteration in these relationships would be as “hopeless” as throwing up a handful of sawdust on a windy day and trying to predict where each particle would land.9 History is full of such attempts, almost always gone wrong, to modify the presence or the activities of single species.

T. H. Huxley, expanding on the joke, added that the true force of the empire was not cats but the perseverant love of English spinsters for cats, which kept the cat population so high.

Let’s take as an example the affair of the color red. When Cortés and his conquistadores first entered the Aztec capital of Tenochtitlán (present- day Mexico City), they found a very rich and very populous city (in Europe at the time only Naples, Paris, and Constantinople had larger populations). In the enormous market square, a quantity of goods never seen before, many of them of great value, were just waiting to be exported to European markets. Among them were bales of finely woven cotton and delicate yarns of an amazing carmine red. The dye used by the Aztecs to produce this incredible tone of red was obtained from a tiny insect, the cochineal, that lives on cactus plants (various species belonging to the genus Opuntia, the prickly pear). The color was so beautiful and precious that states under Aztec domination were required to furnish annually to the emperor a certain number of sacks full of cochineals as tribute. A fine brilliant carmine dye was, and still is, obtained from the dried bodies of these insects.

The production of this dye remained, for almost two and a half centuries, a monopoly of Spain, which guarded the secret jealously and made it into a widespread and highly profitable commerce in Europe. The Spanish sold their dye to whoever could afford it, but above all to the English, who soon became its most enthusiastic and passionate buyers. Enamored of Spanish carmine, which they used to color their military uniforms (their famous red coats), the English found a way to buy it at a high price even during their frequent wars against Spain, in which those very uniforms were used. As Italians say, the heart will not be ruled. That special hue of carmine provided by the Spanish dyes was essential for the British army. Any other red would have made their coats less red, demeaning the glorious nobility of the uniform. After all, what kind of image would they have projected in battle with faded uniforms? Their enemies would have died laughing; and that was no way to win a war.

Enamored of Spanish carmine, which they used to color their military uniforms (their famous red coats), the English found a way to buy it at a high price even during their frequent wars against Spain, in which those very uniforms were used.

For the next 250 years, despite the best efforts of the English to free themselves from this commercial yoke, the secret of that prodigious dye remained unknown to all but a select fortunate few of Spanish producers. But no production secret can stay that way forever, and so in the closing years of the eighteenth century, British spies succeeded in spiriting away the tightly kept formula: in order to obtain the longed-for carmine, you needed cochineals, and to get cochineals you had to have prickly pears. With the right information in hand, all that remained was to find the right place to begin production. There was no shortage of candidates; the empire was enormous and spread over all the continents. The choice fell on the fortunate Australia. Prickly pears had never grown there, but its climate was perfect for their rapid growth, so both prickly pears and cochineals were imported.

The results were not long in coming. The cochineals died immediately on arrival in Australia, while the prickly pears, useless at this point, were abandoned to their Australian destiny. A destiny of conquerors. Unlike the cochineals, the prickly pears found the Australian environment ideal for their dispersion. With no natural enemies or obstacles and with lots of birds to disperse their seeds, in just a few years the plant spread throughout a vast territory. Having arrived in Australia from Brazil in 1788, the prickly pear was dispersed over an estimated seventy-three million acres, and its expansion did not stop there. It went on conquering new territories at an astounding rate of 1.2 million acres per year. Thus, large amounts of cultivated land, farms, pasture, and agricultural areas of Queensland and New South Wales were invaded by prickly pears, driving away farmers and impeding any kind of productive activity. The problem soon became very serious, forcing the authorities, starting in the second half of the nineteenth century, to look for possible solutions.


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In 1901, the government of New South Wales offered £5,000 to anyone who came up with an idea to block the invasion. In 1907, even though the reward had been doubled, it seemed that no one was able to provide an adequate solution. Naturally, there was no shortage of far-fetched proposals. Many people came forward with stratagems that were, let’s say, radical. Among them: increase the number of rabbits as predators of the prickly pear, another interesting story of species introduction gone awry. Or, another gem, evacuate an enormous area of land and use airplanes to spray mustard gas (the gas widely used in World War I) to exterminate the animal population, which was responsible for the dispersal of prickly pear seeds. Fortunately, neither of these proposals was taken into consideration, and for decades the only weapon against the devastating advance of the species was to cut down and burn the plants.

Then, in 1926, a solution was finally found: an Argentine lepidopteran (moth) known as Cactoblastis cactorum, a parasite of various species of Opuntia. By nourishing themselves on cladodes (as the modified leaves of prickly pears are called) the moth larvae managed to debilitate the prickly peril in many parts of Australia. This stratagem enjoyed an extraordinary and unexpected success. In a short time, except in the cooler parts of Australia, where the moth spread less effectively, the prickly pear menace was eliminated.

So it all worked out? In part. Although the introduction of the Cactoblastis in Australia is often cited as a successful operation, so much so that the community of Boonarga, just east of the city of Chincilla in Queensland, even dedicated its Cactoblastis Memorial Hall to the moth. Nature always wants the last word. Over time, populations of prickly pears resistant to the parasite evolved in Australia, and this is a first, though not fatal, complication that will, however, require a more careful control of the cactus population in the future. But the second and more important difficulty is that the Australian success in the use of the lepidopteran induced many other nations with analogous prickly pear problems to go down the same road, with totally unexpected results. As Darwin advised us, trying to predict what will happen in a situation like this is like trying to predict where a piece of sawdust will land on a windy day.

In the 1960s the Cactoblastis was introduced to the Caribbean islands of Montserrat and Antigua as a control agent of the local cactus populations. In Australia, the sawdust fell in the right spot, but in Central America, it didn’t. The moth, in fact, using all kinds of carriers, spread quickly to Puerto Rico, Barbados, the Cayman Islands, Cuba, Haiti, and the Dominican Republic. Through the importation of prickly pears from the Dominican Republic, it arrived for the first time in Florida in 1989, and from there it began to spread at a velocity of over a hundred miles per year along the coast of the Gulf of Mexico. During its expansion, by now completely out of control, this parasite has endangered many cactus populations in the United States and the Caribbean, threatening entire ecosystems, some of them unique. A classic example is the attack on the prickly pear on the Bahamian island of San Salvador, one of the main sources of food for the only extant populations of Cyclura iguanas.

And as if all this were not enough, hurricanes, involuntary transport, and trade have recently transported the Cactoblastis to Mexico, where it has been sighted for the first time on the island of Mujeres, just off the Yucatan peninsula. In Mexico, unlike in Australia, the prickly pear is a vital plant. It even appears in the national emblem and on the flag. Its fruit and cladodes are a staple food for the population. Prickly pears are used to feed livestock in periods of drought, and some species of Opuntia are still used by the cochineal dye industry. If the Cactoblastis were to spread to the Mexico mainland, the damage would be enormous.

But no other natural disaster provoked by humans following rash decisions based on inadequate knowledge of natural relationships will ever be able to rival what Mao Tse-Tung accomplished in the late 1950s. Between 1958 and 1962, the Chinese Communist Party led an economic and social movement in the whole country that came to be known as the Great Leap Forward. This was an enormous collective endeavor meant to transform China in just a few years from an agricultural nation into a great industrial power. The movement’s results, unfortunately, fell dramatically short of what had been hoped. The reforms through which the party intended to effect this radical national change involved every area of Chinese life, and some of them had devastating effects for the country.

In 1958, Mao was rightly convinced that some of the scourges that had plagued the Chinese for centuries had to be eradicated immediately and in a radical fashion. Keep in mind that when the Communists took power in the autumn of 1949, they found themselves governing a nation gravely distressed by a soaring incidence of infectious diseases: plague, cholera, measles, tuberculosis, polio, and malaria were endemic in most of the country. Cholera epidemics were very frequent, and the infant mortality rate ran as high as 30 percent.10

The creation of a national health service and a massive vaccination campaign against plague and measles were the first, meritorious, actions undertaken to improve the situation. Water purification and sewage treatment infrastructure was installed throughout the country, and imitating what had been done previously in the Soviet Union, health care personnel were trained and sent into rural areas to serve as proper health care administrators, educating the population in basic health and hygiene practices and treating diseases with all available resources. But, obviously this wasn’t enough; the diffusion of carriers that spread disease had to be curtailed: mosquitoes, responsible for malaria; rats, spreaders of plague; and, finally, flies had to be exterminated. These three scourges from which China had to be liberated were soon joined by a fourth: sparrows, which by eating fruit and rice cultivated laboriously in the fields were one of the most terrible enemies of the people. Chinese scientists had calculated that each sparrow ate ten pounds of grain per year. So for every million sparrows killed, food for 60,000 people would be saved.

This information was the basis for the “Four Pests Campaign,” and sparrows were public enemy number one. Today, any proposal for ecosystem modification as radical as this call to eliminate four species from a territory as vast as China would, obviously, be considered ill-considered. But in 1958, lots of people thought it seemed like a good idea. So the party’s campaign to recruit the citizenry to combat these four pests was begun. Millions of posters were printed up illustrating the necessary eradication and the means to implement it.

Chinese scientists had calculated that each sparrow ate ten pounds of grain per year. So for every million sparrows killed, food for 60,000 people would be saved.

For the battle against sparrows, the people were told to give no quarter and to use all available means. One of the directives was to frighten the sparrows with noise, produced in any way possible, so they would be forced to fly constantly without ever coming to rest, until they fell to the ground exhausted. Pans, casseroles, gongs, rifles, trumpets, horns, plates, tambourines—any source of noise was put to use. Here is a description of what happened by a Russian observer, Mikhail A. Klochko,11 who was working as a consultant in Beijing when the four pests campaign was launched:

I was awakened early in the morning by the sound of a woman screaming. Rushing over to the window, I saw a young woman running back and forth on the roof of a nearby building, frenetically shaking a bamboo pole with a large sheet tied to it. Suddenly, the woman stopped yelling, apparently to catch her breath, but an instant later, down at the end of the street, a drum started beating, and the woman went back to her blood-curdling screams and the mad shaking of her peculiar banner. This went on for several minutes. Then the drums stopped beating and the woman fell silent. I then realized that, on all the upper floors of my hotel, women dressed in white were waving sheets and towels that were meant to prevent sparrows from landing on the building. This was the opening of the Great Sparrow campaign. All day long I heard drums, gunshots, and screams and saw fluttering sheets, but never at any time did I see a single sparrow. I cannot say whether the poor birds had perceived the mortal danger and flown off in advance to safer terrain, or if there had never been any sparrows in that place. But the battle went on without abatement until noon, with the entire staff of the hotel mobilized and participating: porters, front office managers, interpreters, chambermaids and all the rest.

Although Klochko’s account makes it seem that all this activity was not very effective, the actual results were, unfortunately, devastatingly successful. The government acclaimed the schools, working groups, and governmental agencies that achieved the best results in terms of number of pests killed. The estimates provided by the Chinese government, totally unreliable for their enormity, indicated a billion and a half rats and a billion sparrows killed. Even though they are enormously exaggerated, these figures nevertheless tell us of a massacre whose dramatic consequences would soon be evident. Sparrows, in fact, do not feed exclusively on hulled grains. On the contrary, their main food supply are insects.

In 1959, Mao, realizing his mistake, replaced the sparrows as a target pest with beetles, but the damage had already been done. The almost total lack in China not only of sparrows (which had to be reintroduced from the USSR) but of practically all other birds led to an immeasurable increase in the insect population. The number of locusts began to increase exponentially, and immense swarms of insects making their way through the fields of China destroyed most of the crops. From 1959 to 1961, a series of ill-starred events partially related to natural disasters and partly caused by the mistaken reforms of the Great Leap Forward (the idea to exterminate the sparrows being one of the worst), led to three years of famine so harsh that it caused the deaths of an estimated 20 to 40 million people.

Playing with something whose working mechanisms are not well known is clearly dangerous. The consequences can be completely unpredictable. The strength of ecological communities is one of the engines of life on Earth. At every level, from the microscopic to the macroscopic, it is these communities, understood
as relationships among the living, that allow life to persist.

***

Excerpted from The Nation of Plants by Stefano Mancuso, translated by Gregory Conti. Soon to be published by Other Press.

***

9. R. C. Stauffer, ed., Charles Darwin’s Natural Selection; being the second part of his big species book written from 1856 to 1858 (Cambridge: Cambridge University Press, 1975).

10. David M. Lampton, “Public Health and Politics in China’s Past Two Decades,” Health Services Reports 87, no. 10 (Dec. 1972): 895–904.

11. Mikhail A. Klochko, Soviet Scientist in Red China (London: Hollis & Carter, 1964).

Becoming a Parent During the Pandemic Was the Hardest Thing I’ve Ever Done

Longreads Pick

“I spoke with a number of mental-health experts, many of whom told me that rates of postpartum depression have gone up significantly since the pandemic began. “It’s gotten really, really bad,” Juli Fraga, a psychologist in San Francisco, told me. “I hear about the isolation, and how it feels like Groundhog Day; the heartache of not knowing when you’re going to see your family; and the anxiety of bringing home a new baby … and not being able to have any support, especially early on in the pandemic.””

Source: The Atlantic
Published: Mar 10, 2021
Length: 14 minutes (3,660 words)

‘My Body is Unserviceable and Well Past Its Sell-By Date’: The Last Days of Avril Henry

Longreads Pick

“In his bestselling 1994 book How We Die, Dr Sherwin Nuland observed that, by the logic of hospital administrators and the US Department of Health and Human Services guidelines, “it is illegal to die of old age”. Instead, “everybody is required to die of a named entity”: cancer or heart attack, stroke or traumatic injury. Plain old age – the natural wearing down of systems, the exhaustion of finite cellular life spans, the loss of internal equilibrium – did not count as a cause of death and was never a checkbox option on official paperwork.”

Source: The Guardian
Published: Mar 9, 2021
Length: 18 minutes (4,580 words)

The Sickness That Stole the Trees

Portland Press Herald

There’s a pandemic you’ve probably never heard of, one that started in the Bronx and claimed some 4 billion lives over 35 years and 300,000 square miles. It was a blight—a fungus—that ravaged the American chestnut tree, a keystone species in the ecosystems of the eastern United States and a linchpin in the economy of Appalachia. “By almost any metric,” Kate Morgan details in “Once Upon a Tree,” her new feature in Sierra Magazine, “the American chestnut was a perfect tree.” Men came for the coal in the ground where the chestnuts had once stood, stripping black rock from soil already laid bare by sickness—an insult to environmental injury. A century later, it’s possible that Darling 58, an iteration of the chestnut birthed in a petri dish, could save the species if its seeds are sown in abandoned mines. That’s the hope of people like William Powell, a professor at SUNY College of Environmental Science and Forestry in Syracuse, New York, who has been on the frontlines of chestnut restoration since the 1990s:

Healthy chestnuts produce a large amount of seeds, but they don’t readily germinate on their own because they are often eaten. That’ll be true of the Darling 58 offspring too. “After 100 years, it might travel a mile,” Powell says. “It will spread, but it’s not a weed.”

Turn the coalfields into thriving, mature chestnut forests and the trees could do the rest, seeding themselves into adjacent forestlands. Slowly, from these debased landscapes, a new forest would expand outward. Imagine autumn in a sloping grove, broad, craggy trunks climbing the hillside, their long golden leaves wafting down to catch in the branches of rhododendrons and the needles of evergreens below. Black bears, fat on sweet chestnuts, drag their feet on the loamy ground and salamanders skitter through vernal pools in the forest that was and the forest that could be.

“We call this a century project,” Powell says. “To get it to look even somewhat like it did before the blight is going to take centuries. It’s for the next generation—it’s planting a tree you’ll never enjoy the shade of.”

Read the story

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