Search Results for: Dan P. Lee

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

Deconstructing Disney: Queer Coding and Masculinity in Pocahontas

Illustration by Carolyn Wells

Jeanna Kadlec| Longreads | April 2021 | 2,936 words (11 minutes)

Disney often codes their villains as queer: This is widely known and accepted. First noticed by scholars during the Disney Renaissance of the late ‘80s through the ‘90s, critical observations about characters like Scar (The Lion King) have since disseminated into pithy, viral tweets and TikToks. A quick Google search of “gay Disney villains” will turn up dozens of articles, all repeating the same litany of facts: That The Little Mermaid’s Ursula is based on the iconic drag queen Divine, that Hollywood often uses British accents and effeminate mannerisms in men like Robin Hood’s King John to signal moral decrepitude.

But those are observations without analysis, which is to say: pointing out the obvious without asking why or how. The subtext of these clickbait articles and listicles is often: Disney codes villains as queer because Disney thinks being gay is bad. Which is one way to read it.

However, simply saying “Disney is bigoted” has never sat entirely well with me for one reason: In spite of what the Supreme Court of the United States may rule, Disney is not a person. Disney is a corporation that wields the power of a nation-state, and, consequently, has one central obsession — the preservation and expansion of that power, a theme that is prevalent and evident in every story they allow their employees and contractors to tell. 

If queerness is consistently coded a certain way, it has something to do with how Disney wants power to function — who can wield it, and how. 

***

Millennials are the generation whose childhoods were shaped by the stories of the Disney Renaissance, a period generally considered to have begun with 1989’s The Little Mermaid and concluded with 1999’s Tarzan. It includes favorites like Aladdin, Beauty and the Beast, and Mulan — which, incidentally, are at the heart of the corporation’s “live-action” remake strategy, intended to further monetize a now-grown generation’s nostalgia for the stories that formed us, stories we can share with our own children (or group texts). 

The Disney Renaissance was birthed after a decade of HIV/AIDS ravaging queer communities; its height marked by political milestones such as President Clinton’s signing of the Defense of Marriage Act (1996) and the institution of “Don’t Ask, Don’t Tell” for LGBTQ+ members of the military. Divergent, non-normative sexuality was purportedly a threat to society, and Disney, ever the quiet institutional soldier, answered by providing a veritable stable of queer-coded villains who were ill-suited to lead or assume power. 

Indeed, there were so many queer-coded villains in this period that it’s hard to remember them all — let alone the different lessons they taught us. To wit, you probably remember Scar, Jafar, and Ursula, but you have probably forgotten Governor Ratcliffe from 1995’s Pocahontas: the fashion-conscious, social-climbing, crown-appointed governor in charge of the colonizing “mission” to the “New World.”

Pocahontas has one of the top-five highest-grossing Disney soundtracks of all time, but that’s generally where any lingering nostalgia dies. To say that the film itself is problematic is an understatement. While the screenshot of Chief Powhatan, Pocahontas’ father, saying “these white men are dangerous” has found a rich afterlife on social media, the film’s historical inaccuracy and deliberate whitewashing of colonization and its aftermath have cycled it out of many a millennial’s “comfort film” rotation, something that has generally gone unaddressed by the corporation. (The fact that Mel Gibson voiced John Smith hasn’t helped, either.) 

Pocahontas may seem like a strange vehicle for discussing queer villainy. But that’s the thing: Disney gets inventive when they need to circumvent white people’s historical responsibility for genocidal atrocities, and what better way to do that than to displace the heart of the film’s conflict onto contemporary cultural anxiety: queerness and its incumbent specter, masculinity. 

Divergent, non-normative sexuality was purportedly a threat to society, and Disney, ever the quiet institutional soldier, answered by providing a veritable stable of queer-coded villains who were ill-suited to lead or assume power.

Disney’s attitudes toward colonization and queer coding are, it turns out, inextricably linked. By using a queer-coded villain, the corporation entirely elides white responsibility in retelling a historical tragedy, letting the cowboy-type colonizers off the hook for any wrongdoing and, instead, reframing them as the heroes of the story. In Pocahontas, Disney pulls off the magic trick of telling a story about colonization and genocide where the only thing that’s actually punished is the “wrong” kind of masculinity. 

***

Governor Ratcliffe is not set up as the villain because he is a colonizer, or even because he is in charge of the mission to invade the Powhatan nation — or, as Disney has framed it, dig for gold. To criticize him for these positions would implicate and damage the purported “heroism” of every other white character on screen. 

Something else, then, must indicate his villainy, and Ratcliffe violates Disney’s favorite American norms — individualism, hard work, modesty — immediately. He wears bows in his hair and a literal feather in his cap. His twinky manservant, Wiggins, helps dress him, and is even in charge of bathing his dog … and let’s take a moment to discuss the dog. Unless fighting, Ratcliffe is rarely seen not carrying his white pug, Percy, who is always adorned in a collar that is fancier than anything the crew are wearing. Disney villains’ animal familiars tell us something about their personality, and Percy’s taste for luxury speaks volumes about Ratcliffe’s lifestyle. 

Ratcliffe prefers to delegate rather than do physical labor himself, a standard managerial practice, but not something heroes do. He belittles his workers when things don’t go well, seeing his crew as a means to an end and insulting them as “witless peasants” behind closed doors.

The narrative works to align the audience’s viewpoint with that of the other colonizers: in the words of one of the laborers, “Look at us! No gold, no food, while Ratcliffe sits in his tent all day, happy as a clam.” The audience is clearly meant to sympathize with the worker instead of Ratcliffe, the villainous manager, even if that worker is also occupying stolen land and explicitly fantasizing about killing Indigenous people. (What “audience,” exactly, is this for? You already know the answer.) 


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However, it isn’t just that Ratcliffe is a bullying, well-dressed boss in an environment where no one is impressed by designer wares. He’s deeply insecure and concerned about what other people think, as opposed to the naturally popular, carefree everyman that is the Captain of the ship (and Pocahontas’ eventual love interest) John Smith. In fact, we learn that this mission is something of a last-ditch effort to salvage Ratcliffe’s reputation with the king. For him, success means falling in line, trying to do right by the crown, to reap the reward. When he says “it’s not that I’m bitter,” we understand that he is, in fact, deeply bitter.

Ratcliffe’s real fantasy is power — bringing his enemies at court to heel, being so celebrated that “My dear friend King Jimmy will probably build me a shrine” — precisely because he feels so ironically powerless.

This is not the kind of chaotic, burn-it-all-down villain who has been canonized by drag shows. 

***

A casual Google search reveals that Ratcliffe does not even show up on most “Gay Disney Villain” lists. Something about him elides memory and decisive categorization as other, encouraging a certain slippage. 

He isn’t as easy to pin down as the Queer Villains of Excess: the Scars and Ursulas who you can spot by their muchness, their refusal to conform to rigid social structures, their wild desire to usurp the throne. Excess is the singular quality that usually drives queer-coded villains to crave power at all costs, their appetites monstrous and unnatural. 

Ironically, even the most chaotic queer-coded villains are rarely bent on creating their own power structures — they only ever desire the kingdom and, seemingly, the lives of their straight-coded, heroic counterparts. Jafar wants to be sultan, but has no conception of what to do with that power once obtained, to the point he cannot strategize enough to realize that the genie is beholden to others. Scar believes himself to be the rightful ruler of the Pride Lands, only to drive the kingdom into a barren wasteland: The queer failure of reproduction, on which society so purportedly rests, made manifest. “Fuck the social order and the child in whose name we’re collectively terrorized,” queer theorist Lee Edelman writes in No Future — the anthem of Disney villains everywhere. 

Disney gets inventive when they need to circumvent white people’s historical responsibility for genocidal atrocities, and what better way to do that than to displace the heart of the film’s conflict onto contemporary cultural anxiety: queerness and its incumbent specter, masculinity.

The opposite of excess is moderation, and restraining oneself to fit into the boxes society has prescribed — well, this is assimilation. 

Assimilation is when a group of people assumes the values, behaviors, and beliefs of another group — when something core and essential to one’s culture and sense of self and identity is lost in the interest of resembling the social majority. In the U.S., this has had many iterations around the suppression of non-English languages, the forced Christianization of Indigenous peoples, and more. For the LGBTQ+ community, it looks like our communities having been largely underground until the last 50 or so years, because social legibility meant imprisonment, exile, or death 

In many ways, for many people, various forms of assimilation are pure survival in a white, heteronormative, and otherwise profoundly difficult world. But assimilation used against one’s own community, assimilation used to turn the target off your own back and toward communities with less cultural power than yours, becomes an alliance with the oppressor. 

Ratcliffe is a queer-coded villain whose trademark is assimilation, not excess. This is why he slips and slides through millennial memory — hard to remember, hard to pin down. He isn’t an outsider, an icon to queer children everywhere, an individualist who has chosen himself at all costs, someone who we grew up both terrified of and wanting to become. No. He is trying desperately to fit in, to use the white supremacist system to his own benefit. But working for the system always comes with a price. 

***

There is a queer anxiety to Ratcliffe, because he knows his attempts to fit in are pretense. This is, as he says himself, “my last chance for glory.” Does he exile himself from the crew of colonizers because he thinks he’s better than them, or because he thinks they’ll see through him? Or both? Captain John Smith can have a beer with the guys. Ratcliffe, not so much.

Holding the title of “governor” in a servile bureaucracy doesn’t guarantee respect. Rugged masculinity and physicality — the kind Smith has — does. On a certain level, Ratcliffe both understands and resents this: “The men like Smith, don’t they?” he asks his manservant Wiggins. Even their voices tell the story: Ratcliffe is the villainous bureaucrat, complete with an English accent. Smith is the heroic adventurer — with Mel Gibson’s American accent intact and unfettered. 

John Smith has swagger — and a reputation that precedes him. “You can’t fight Indians without John Smith!” one of the colonizers declares in his introductory scene, as Smith literally rides a cannon onto the ship. Depicted as a natural leader, he’s respected by his men for his physical prowess and bravery that borders on stupidity. Smith has a martyr-like willingness to put himself in harm’s way for his men that, while not explicitly labeled as Christian, is certainly coded as such. “You’d do the same for me,” Smith says jokingly to his companions, after leaping into the ocean during a storm to save a man who fell overboard. He is, in essence, exactly the kind of leading man that Mel Gibson, the actor who voices him, spent a career playing — the mythic American cowboy and ideal leading man of Hollywood cinema. (Complete with the domestic abuse and antisemitism bona fides.) 

Queer-coded Ratcliffe is trying to earn a place in the system by being its most traditional guardian, but he also represents a kind of masculinity that has long since gone indoors to the Royal Court, concerned with accumulation through relationship and intellect. Americans recognize this as the masculinity of the educated, high-born (or aspirational) cultural aesthete, anxieties about which would soon manifest in the late ‘90s and early ‘00s under the term “metrosexual.” John Smith, conversely, represents the rugged, individualist masculinity that defines itself not by social status but by a cowboy mentality, by connection with God, family, and the land.  

In many ways, Pocahontas is structured like a Western, and John Smith may as well be John Wayne. John Smith saves the man who fell overboard; Ratcliffe is the government lackey in a suit who hunkers down in his cabin and only emerges once the danger has passed, clutching his pug while his manservant shields him with an umbrella. Government intervention is often a primary conflict in Westerns, resented by white colonizers played by actors like Wayne, who have gone west and figured out a way to live (with varying levels of hostility to the local Indigenous community) outside of federal oversight. The men in suits have effeminate mannerisms, a lot of education, and virtually no physical strength (coded as natural, God-given virility), with very little idea on how to practically connect to the world around them. Set aside for a moment the well-documented historical phenomenon of white, Black, and Latino gay cowboys throughout the 19th and 20th centuries, and apply the genre of American Westerns and their ideology of masculinity, expansion, and, consequently, who gets to have what in Pocahontas

What do the colonizers want, respectively, in Pocahontas? (Obvious question, but stay with me.) In Ratcliffe’s villain anthem, “Mine, Mine, Mine” — which is, and I cannot stress this enough, a duet with John Smith — Ratcliffe is singing about the gold allowing him to accumulate wealth and reputation and status, delegating the digging to the crew. Smith is the one actually singing about the land while climbing trees and waterfalls, activities which seem unnecessarily strenuous. But don’t they want the same thing: to take whatever land they land on in the interest of colonial expansion? Haven’t Smith and Ratcliffe already been shown to be very much on the same page about the murder and displacement of Indigenous peoples? But Disney’s edit would have you think otherwise. 

John Smith has swagger — and a reputation that precedes him. “You can’t fight Indians without John Smith!” one of the colonizers declares in his introductory scene, as Smith literally rides a cannon onto the ship.

Beneath the surface, anxieties about all-too-contemporary masculinity and what constitutes manhood are relocated to the center of the driving conflict of Pocahontas — one that allows a corporation to elide reckoning with the violent historical subject matter of the actual plot. 

And therein is the issue: Ratcliffe becomes the villain because Smith, his fellow colonizer, cannot be. 

***

In the end, Ratcliffe’s men turn on him. At first glance, it might seem like they are doing so out of sympathy for Pocahontas and her people, as Ratcliffe had been trying to assassinate her father, Chief Powhatan. But this is not it — the other white men don’t try to stop him when he first aims his gun, not until he accidentally shoots John Smith, who is shown taking a bullet for the chief (which is, please note, a fictional event that did not happen). 

“You shot him!” one accuses. “Smith was right all along!” another cries hypocritically, as all of them had been worked up in a racist war song (“Savages”), fantasizing about genocide only the night before. The white colonizers mutiny in favor of the preferred masculine archetype: The Cowboy. Ratcliffe is tied up, gagged, and set to be tried upon return to England. 

It is deeply satisfying to see the avowedly racist Ratcliffe in chains. But is the colonizing and racist rhetoric what he’s being punished for? No. The other colonizers are still walking free, many of them staying behind to continue to build up their Jamestown settlement. 

Colonizing isn’t worthy of punishment in this film, nor is racism, otherwise every white character — John Smith included — would be in chains. The reality is that Ratcliffe is punished for failing to assimilate within the crew successfully, for not embodying the right kind of masculinity, for not reading the room, and attacking the much-respected cowboy-esque leader who the men ultimately mutiny for. This is his crime: not trying to assassinate Chief Powhatan, but wounding one of his own. Meanwhile, Thomas, a colonizer who explicitly murders an Indigenous warrior, Kocoum, is given … a redemption arc, complete with Pocahontas’ forgiveness. 

How tenuous the conditions of acceptance for white gays doing the bidding of white supremacy. 

***

Ratcliffe is, simply put, a Corporate Gay, a Log Cabin Republican, a Cyrus Bean, the Disney equivalent of (allegedly) that one senator from South Carolina. Ratcliffe has bought into the idea that serving the system will benefit him, and that if only he does its bidding, things will ultimately work out. But queerness renders you automatically suspect within any system of power, even white supremacy. What Ratcliffe, and other white gays like him, fail to realize is that assimilation is not acceptance; it is merely borrowed time. 

There is a savvy to the Queer Villains of Excess like Scar and Ursula, who understand that there is no utility in trying to fit in, who know that there is no box possibly small enough to cram your queer ass into. But, truth be told, even these villains have boundaries they won’t cross, only ever wanting to kill the king and usurp his throne — but never outright abolish abusive systems of power. 

There is no queer revolution amongst Disney villains, see. There is no abolition, no truly radical liberation within the fairy tales that ultimately serve to codify what “happily ever after” means, and for who. In Disney, queerness is only ever an imitation of the hetero original, never a full expression of itself. Gay villains are depicted as the dog who caught the car: Once they get it, what do they even do?

* * *

Jeanna Kadlec is a culture writer living in NYC. Her writing has appeared in ELLE, O the Oprah Magazine, LitHub, NYLON, Allure, and more.

Editor: Carolyn Wells

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)

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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

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

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

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

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

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

Read more…

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

The Big Bear Reading List

Image: Carolyn Wells

Growing up in England, my knowledge of bears largely came from Yogi Bear cartoons, and on a childhood holiday to North America, it wasn’t Disneyland, but the thought of seeing a real-life Yogi that I was most excited about. However, despite my parents stoically driving a hire car down treacherous mountain roads as I lounged in the back bemoaning the lack of performing bears, it never happened.

It wasn’t until I moved to Canada many years later that I saw my first bear. I just turned a corner and there it was, a young black bear casually munching grass, completely unphased by my open-mouthed awe. Several years on, I have seen countless black bears; in fact, they rather enjoy relieving themselves on my front lawn after overindulging in next door’s apple trees. But my childhood wonder of them remains.

I am not the only one drawn to the subject; bears have inspired some wonderful articles, so I’ve compiled a reading list of six stories that not only look at bears, but the emotions and issues that they provoke.

1. Where Now Grizzly Bear? (Brian Payton, Hakai Magazine, January 2021)

In this article, Brian Payton shows grizzly bears to be intrepid explorers “destined to wander” — with male grizzlies swimming up to seven kilometers to find new territories. I found myself hypnotized by a map included in the piece, which tracks a grizzly bear as it travels an incredible 850 kilometers over five months. The positive side of grizzly bears turning up in new places is that, after decades of persecution, their numbers are finally improving and young males are looking to move away from “all these big dudes.” On the other hand, this means potential human conflict: “We know they will coexist with us. Their survival depends on our willingness to coexist with them.”

A bear emerges from dense vegetation and pauses on the shore. It’s early spring, and the young grizzly has only recently roused from hibernation, ravenous and driven. He lifts his head and gazes out across the falling tide to the opposite shore, where forested slopes are close enough to make out individual trees. The bear stands and sniffs the air.

Grizzlies can see about as well as we can, but it’s their olfactory powers—at least 2,000 times more acute than ours—that most likely set them in motion. We’ll never grasp how they perceive the world, let alone what they’re thinking. For some reason, this bear falls back on all fours, ambles away from prime habitat, and wades into the sea.

To reach the far shore, he dog-paddles west across Johnstone Strait, one of the narrowest navigable channels that make up the fabled Inside Passage. This stretch of water separates the North American mainland from the largest island on the Pacific coast, British Columbia’s Vancouver Island. It’s only three to 4.5 kilometers across but anywhere from 70 to 500 meters deep. Swift tidal currents can reach 15 kilometers per hour. Vessels of every description pass through, from kayaks to freighters, to cruise ships carrying thousands of passengers. At this time of year, the water temperature averages about 8 °C, but the bear has almost no fat left to insulate him from the cold.

2. Grizzlies at the Table (Jimmy Thomson, Beside Magazine, December 2020)

One place in which grizzly bears are more prevalent than ever is in Wuikinuxv, British Columbia. Jimmy Thomson’s beautiful piece highlights the respect that this First Nations community gives their frequent visitors. The bears are valued as an important part of the ecosystem: “In eating the salmon, the bears bridge the gap between the deep ocean and the treetops, dragging the wriggling essence of one ecosystem into another.” This article is full of such powerful imagery, and Thomson’s respect for the people who wish to defend these animals is apparent.

Adam Nelson pulls the band’s truck into the small landfill less than a kilometer from the village, as he does three times a week to keep bear attractants out of people’s homes, and honks his horn to avoid startling any nearby bears. He and Corey Hanuse toss the village’s garbage bags into the landfill and wait. Minutes later a large grizzly is tearing the bags apart.

An electrified fence around the landfill, installed at great expense, lasted three days. The bears pulled it open like a can of sardines and it hasn’t been repaired. Later, someone stole the batteries. The bears have become accustomed now to the easy food the dump has on offer, and most days it’s possible to find them snacking amongst the detritus. Better there than roaming the village.

3. Barbearians at the Gate (Matthew Hongoltz-Hetling, The Atavist Magazine, May 2018)

Bear intrusions are not so welcome in other areas. Matthew Hongoltz-Hetling’s article documents life in Grafton, New Hampshire, where residents believe “in untethering themselves from institution, foraging for food, and hunting game with guns, arrows, and knives.” Hongoltz-Hetling discovers a deep-rooted conflict in Grafton between man and bear, explaining the drama with a colorful array of local stories — about eaten cats and bear-fighting llamas, for instance — that tell us as much about the characters and colloquialisms of Grafton as about the bears themselves.

With bears reaching peak boogie man status, Hongoltz-Hetling also hears whispers of a darker side to the conflict — vigilante posses embarking on clandestine hunts of bears sleeping in their dens, even though “a person was (and still is) much more likely to suffocate in a giant vat of corn than be killed by a bear.” This article is an intriguing insight into small-town life — told through the bears.

Can bears be calculating? Babiarz and other Grafton residents I spoke to sure seemed to think so. Dave Thurber, a Vietnam War veteran who lives up the road from Jessica Soule, recounted how, one dark winter night, he had a feeling that something wasn’t right. He peeled back a corner of the curtains covering his living room windows and peered out at the front lawn, where he spotted a bear delicately licking sunflower seeds from a bird feeder. When a car approached, the bear flattened itself against a snowbank like an escaping prisoner evading a watchtower spotlight. After the car passed, the bear resumed eating.

Rumors of the bears’ cunning had planted unsettling questions in the minds of Grafton residents: How close are we to a bear right now? Could one be just beyond someone’s front door or hiding behind a nearby tree, casing a pet or, worse, someone’s child?

4. A Death in Yellowstone (Jessica Grose, Slate, April 2012)

How do you manage conflict between humans and bears when it escalates? That’s a dilemma faced by many park rangers. In the Yogi Bear cartoons, Yogi was a cheeky chap who loved to steal the odd picnic basket from guests at his home in Jellystone National Park. In this article, Jessica Grose discovers the stark reality that a fed bear is often a dead bear — for national parks are, ultimately, a human creation: “Its boundaries are built and monitored by the government, and the rangers are responsible for keeping its … visitors safe.” If a bear gets too close, the rangers have to play judge and jury on its life.

This was the case with Grose’s subject — the Wapiti sow — a bear thought to have been responsible for two deaths in Yellowstone National Park. Grose’s piece is a harrowing look at bear attacks and how rangers weigh up a bear’s guilt like a criminal case, with “ non-acidic envelopes for storing evidence, tweezers for picking up multicolored grizzly bear hairs, tape measures for measuring bear tracks.” The death penalty is based on whether a bear was acting in a naturally aggressive way or not. But what exactly is natural? The penal code for wild animals is a hard one to decipher.

Wildlife biologists like Kerry Gunther help the park’s crime-scene investigators by speculating on a bear’s emotional state. Based on the evidence at hand, he tries to determine whether a given act of bear aggression might have been a natural behavior—the result of being startled while feeding on an elk carcass, for example, or seeing someone approaching her cubs. If a bear appears to have followed a hiker down the trail instead of backing off, or if it attacked campers while they were asleep, that would be more unusual—the result, perhaps of a deranged grizzly mind.

In a mauling case like that of John Wallace, in which there are no living (human) witnesses, sorting out these categories of bear aggression can be especially vexing. But there’s one piece of circumstantial evidence that almost always leads to euthanasia: a half-eaten corpse. Under normal circumstances, the grizzly diet in Yellowstone is about 60 percent vegetarian—roots and nuts, with the remainder coming from pocket gophers, trout, elk, and bison. If the rangers have good reason to believe that a bear killed a human being and then consumed his body, that bear’s behavior will be deemed unnatural—and its crime a capital offense.

5. Lessons From a Bear Attack (Eva Holland, Cottage Life, December 2020)

Not all bears are given a guilty verdict after an attack. When Mya Helena Myllykoski and her son were charged by a grizzly bear, the bear received a reprieve for acting naturally to defend a moose carcass. In her interview with Eva Holland, Myllykoski describes her relief that the bear was spared, and how instead of paralyzing her with fear, the attack inspired her to fight to protect bears. Holland explores the fascinating psychology behind Myllykoski’s “post-traumatic growth,” as well as describing the attack itself in spine-tingling detail. Her account demonstrates great respect for the wilderness she is writing about — in a previous piece, “When a Fatal Grizzly Mauling Goes Viral,” Holland discusses her reluctance to report on bear attacks at all: They are incredibly rare, and she questions whether writing about them is anything more than voyeurism for those outside of bear country. This perspective brings sincerity, thoughtfulness, and understanding to her work on the subject.

When she shares that detail—that she has felt a grizzly bear’s hot breath on her face—I feel something unexpected creeping up inside me, a little green shoot alongside the larger growth of fear and fascination as I listen to her story: envy. Irrationally, against all logic or instinct for survival, I envy that experience, just a little. When she tells me that she regrets not having a memory of that smell, I understand what she means. I want to know what the bear smelled like too.

We crave vivid and authentic encounters with the wilderness. That, in part, is why we go out there, why we leave the city behind for an afternoon or a weekend, or more. We want to see the stars turn overhead and hear loons, owls, and coyotes; we want to watch the mist burn off a river’s surface, or a thunderstorm roll across a lake. We want to smell crushed spruce needles and wet, decomposing logs and that sweet dirt scent when the mushrooms begin to pop up.

Wilderness can feed us. It can fill our lives up with rich sensory memories. But we take risks in going there, and we bring risk with us for the animals that live there too. Sometimes we pay a price for our curiosity and our desires—but more often, they pay the price instead.

6. This Man Protected Wild Bears Every Day for 13 Years — Until He Made the Ultimate Sacrifice (Nick Jans, Reader’s Digest, June 2019)

Timothy Treadwell took the meaning of bear advocate to a whole new level. I first learned about Treadwell through watching Werner Herzog’s 2005 documentary Grizzly Man, an incredible film that uses sequences extracted from more than 100 hours of video footage shot by Treadwell during the last five years of his life — years he spent living amongst grizzly bears in Alaska. Nick Jans has also written a beautiful book about Treadwell, The Grizzly Maze, depicting the journey that led Treadwell to the bears, and the stunning, eerie landscape of Alaska that is their home.

In this excerpt for Reader’s Digest, Jans explains how Treadwell was a controversial figure, a self-styled “bear whisperer” who refused to accept bears as dangerous animals, and “gave them names like Thumper, Mr. Chocolate, and Squiggle. He would walk up to a half-ton wild animal with four-inch claws and two-inch fangs, and say, ‘Czar, I’m so worried! I can’t find little Booble.'” Jans provides a moving portrait of Treadwell, culminating in a gut-wrenching description of his final demise — mauled by a bear. Accustomed to recording his life, Treadwell and his girlfriend, Amie Huguenard, had a camera turned on during the attack: “Treadwell did not die quickly. The tape runs roughly six minutes, and his cries can be heard two-thirds of that time.”

While many believe Treadwell encroached on the life of the bears, rendering his end inevitable, he was still a remarkable, larger-than-life character, and Jans manages to capture him with his elegant prose.

Those searching for the meaning in what happened to Timothy Treadwell offer compelling theories, impossible to either prove or refute but containing flickers of insight. Bear-viewing guide Gary Porter says, “I think Timmy made a fundamental anthropomorphic error. Naming them and hanging around with them as long as he did, he probably forgot they were bears. And maybe they forgot, some of the time, he was human.” Porter points out that old, dominant males generally avoid people and are intolerant of other bears. A subordinate bear that refuses to move is attacked and, if it doesn’t retreat, is often killed and eaten. Biologist Larry Van Daele calls such an event “apparently more of a disciplinary action than predatory.”

And he, too, agrees there may be something to the theory, especially given “the strange, ambiguous signals Timothy sent to bears.”

“Maybe that big guy figured Timmy was just another bear,” Porter suggests. If so, it was a final, ironic compliment to a man who strove, among bears, to become as much like them as possible.

The Geography Closest In

Photo by Mats Silvan/Getty Images. Edit by Cheri Lucas Rowlands.

Miranda Ward | Adrift | Weidenfeld & Nicolson | January 2021 | 15 minutes (4,339 words)

The bald conclusiveness of a positive pregnancy test draws a clear line between yes/no, this/that, knowing/not-­knowing. For a moment at least it clarifies everything, or distils it, into a single and irrefutable piece of knowledge. This certainty, when it comes to the body, is rare (later a doctor will tell me: if everything in medicine were as reliable as a pregnancy test, my job would be a lot easier), so I hold on to that piece of knowledge, which is proof of my own productivity, for as long as I can.

But doubt, worry, have a way of threading their way through even the solidest conviction. Threat is everywhere: a light fever, an undercooked egg. Indeed the more I read the more I realise how fragile a pregnancy is, how it isn’t as simple as a positive test and a baby nine months later, which is something I suppose I always knew in the abstract but never had any real frame of reference for before. I was aware that some of my friends and acquaintances, for example, had had miscarriages, but I had not until now really understood what it meant, in both practical and emotional terms, to have to hold an awareness of this terrible possibility always alongside a hope, a longing, for it not to happen to you. Most of what I know about pregnancy, in fact, comes from fiction, from books, films, TV: the way certain signifiers – wooziness, weakness, nausea – are used to suggest a pregnancy before it is confirmed; the way, once it is confirmed, a woman must somehow both alter her behaviour drastically and hardly at all, vomiting copiously into a bin at work seconds before giving a presentation just as if nothing is amiss, but studiously avoiding, suddenly, a whole litany of food and drink; most of all the way a baby is almost always the inevitable result of a pregnancy. The plain fact of it – that at least one in four pregnancies end in miscarriage, perhaps more, since sometimes a woman might miscarry before she even knows she’s pregnant – had somehow eluded me, or else I had somehow failed to think of it in tangible terms.

What does that statistic actually mean, practically speaking? It means that nothing is a given. It means that there are people – a lot of people – for whom the result of a pregnancy is not a baby. It means that even the purest elation is often shaded, especially in the early weeks, when miscarriage is most likely, with fear.

I develop a set of superstitions for protection; certain shirts for luck, certain routes home from the library or the grocery store, certain songs skipped or repeated. An aping at control. And for a while everything is normal, in the sense that nothing is normal, in the sense that I feel slightly ill, weary, a little as if I am not myself. My overriding emotion is happiness, but there is also a part of me that feels as if I have become separated somehow from my body, as if it is acting of its own accord, and the thinking part of me is just along for the ride. There are psychological adjustments to make – I have to play the phrase I’m pregnant over and over to myself to believe it; I have to think about what is good for me not in terms of my body only, but also in terms of the invisible body-­to­-be inside me. There are physical symptoms, too, though they are mild (another thing I didn’t realise: that while some pregnant women are indeed debilitated by illness or weariness, not everyone is). I am never actually sick, though I am dogged by a whisper of nausea that asserts itself at odd times and leads me to keep a pack of digest­ives on my bedside table. I can feel a largeness, a tenderness, to my breasts, and although I know it’s far too early for the pregnancy itself to show I feel fuller somehow, heavier than I was before I knew, as if the knowledge itself has some weight or substance to it.

This is not an unpleasant feeling – because it is a novelty, and because the pregnancy is so unequivocally desired – but it is hard to escape a sense of uneasiness, too. I find myself tracing familiar routes around Oxford, where I’ve lived for years, ever since I moved to the UK after university; I know the roads well, and yet I feel every encounter between feet and pavement to be different now, because I am differently bodied. What I have is a sense, visceral and unignor­able, that my body no longer belongs wholly to me – and in a way it doesn’t. As I walk I feel not exactly a ‘we’, but a blooming plurality, an ‘I and…’, perhaps, the assertion of a possibility taking physical form. Where once I occupied my mind during walks with long, elaborate daydreams, there now seems to be no room for anything other than the immediacy of experience and the planning and execution of the tasks of my own daily life. I take to listening to radio shows and podcasts, tuning out my external surroundings and internal circumstances, focusing on the minute details of, say, a true crime story, losing myself in the voice of the presenter.

* * *

Geographers write about the inseparability of the body from our experience of place: we sense places, are bodily present in them, see them, hear them, smell them, move within them. How else do we know a favourite room or city or mountain trail? The body, as Tim Edensor writes, is the means through which we experience and feel the world.

To which he adds: bodies are not only written upon but also write their own feelings upon a space in a process of continual remaking.

What I am struck by in the delicate earliest weeks of pregnancy is that I am being both made and unmade; rewritten. The pregnancy is largely unspoken of: we have told our doctor, and our parents, which perhaps lends it a weight in the world that it wouldn’t yet have had we not told anyone, but day to day I move through the hours without anyone but us knowing, because the pregnancy is still invisible. When I stand in front of the mirror I see nothing different, but nothing the same, either. When I go to the swimming pool, as I do most mornings, an almost religious habit, the place of it has shifted, though the change is microscopic, under the surface. On a quiet morning I watch the play of sunlight on the bottom of the pool and I am in a foreign country. In the changing room, pulling off my wet suit after a shower, I am self­-conscious for the first time – can they tell? But I want them to tell, even though there’s no way they possibly could, even though when I think of it I have the sense not so much of the world tilting on its axis but of the axis itself having drifted elsewhere. I smile knowingly at a visibly pregnant woman undressing and she looks away, uncomprehending or embarrassed or both. I am the foreign country, or else I have lost the map of this place. Walking home, along the same roads I have always taken, the green of the trees fading into yellow, I feel somehow both lonely and plural.

* * *

And then.

One morning, a few weeks after that first definitive, positive test, I wake up and feel my old self again – that is to say, not ill, not weary, not plural or novel – and that evening I experience some mild pain, a quick gush of blood which soon slows to an ambiguous but ominous trickle, and a sense of doom. I am not sure what the appropriate reaction is: denial? Despair? I cannot summon the energy to cook or even to eat dinner; although it is still early I retire to bed, lying on top of the duvet, curled into a question mark. Alexander lies down next to me, his body settling around mine. He tells me the things I both want and don’t want to hear: that it’s OK, that we don’t know for sure that anything’s wrong yet, that he loves me. He’s meant to be playing football in twenty minutes. Do you want me to stay? he says. I’ll stay with you. No, I say vehemently, as if this is in fact an uncharitable suggestion, you should go, you should play, what can you do at this point, what can I do? Nothing. Even after he’s pulled his socks over his shinpads, laced up his boots, he hesitates at the door: are you sure you don’t want me to stay? I don’t want you to stay, I say emphatically. If I were being honest – with him, with myself – I’d say exactly the opposite: stay, please. Instead I lie back and stare at the wall for an hour until he gets home and we go to sleep.

The next morning I call my GP, who arranges an emergency scan for me at the hospital. The soonest the scan can be done is in two days, so in the interim period I carry on as usual: I go to meetings, answer emails, run errands. It’s not as hard to do this as I would have imagined it would be, and after all, what choice do I have? But it’s also indicative of the ongoingness that will characterise much of the next two months.

I cannot summon the energy to cook or even to eat dinner; although it is still early I retire to bed, lying on top of the duvet, curled into a question mark.

I would have imagined, too, that a miscarriage was a definite thing – yes/no, this/that, knowing/not­-knowing – a neatly shaped happening with a beginning, a middle, a definitive end, each closely following the other. Women say, ‘I had a miscar­riage’, and until now I have always heard their experience as being something contained, even while brutally uncontrollable: all those stories of blood-­drenched bathroom floors, of unimag­inable agony, of horror and shock, of sadness and then resolution (often in the form of a baby arriving a year or two on, as if some consolation must always be offered): what I understand now, of course, is that these stories are told retrospectively, packaged in the way that all stories, to some extent, must be. But when I phone the doctor I’m unsure, grammatically speaking, how to phrase my concern: do I say to him that I have had a miscarriage, that I’m having one, that I’m worried I might have one in the future? The idea of the miscarriage in progress perplexes the part of me that imagined that this is a thing that can only happen privately, violently, suddenly, because it is a thing that is happening without much noise at all, and meanwhile here I am transcribing an interview, here I am meeting with a freelance client, wearing a new skirt I bought yesterday from the charity shop, here I am buying groceries and planning dinner, with nothing but a question mark inside me.

Alexander and I take a taxi to the hospital for the scan; it’s early morning and the driver is playing loud Pakistani pop, which is somehow soothing, and drowns out my own thoughts. In the waiting room Alexander scrolls restlessly through his phone. A little plastic radio on a cabinet in the corner of the room is pumping out cheerful tunes punctuated by cheerful radio host banter. I take my book from my handbag and lay it on my knees, open at my marked place. Knausgaard, A Death in the Family. In his younger-­self narrative, the author’s father has just died, while in his current­-self narrative, his partner is heavily pregnant, lumbering around, practically bursting with new life. But I cannot read on. I become fixated on a single paragraph, a description of a piece of artwork, which strikes me as incomprehensible. I read it over and over again until my name is called.

The scan reveals an embryo with no heartbeat. I lie on the bed, naked from the waist down, a blue plastic sheet draped over my legs. Alexander holds my hand while the ultrasound technician swirls a wand around inside me, talking us through the image of my uterus on the screen. It is illegible to me – darkness, light, hazy shapes – but to her the meaning is crystal clear. I’m so sorry it’s not the news you were hoping for, she says. She gives me a wad of tissue to wipe myself with before leaving the room to let me get dressed. She leads us back to the waiting room, which is fuller now, no one making eye contact, the radio still humming; a doctor will see you soon, she says, to talk to you about what happens next. ‘Soon’ is an ambiguous word, and time becomes difficult to perceive; we are there for what feels like both an eternity and an instant. I take my book out again, stare again at that same page; Alexander unlocks his phone, moves his finger across the screen in a kind of robotic motion.

What I am struck by in the delicate earliest weeks of pregnancy is that I am being both made and unmade; rewritten.

Sometimes these things resolve naturally, the doctor says when we are finally called in to see her; sometimes intervention becomes necessary, or desirable. She schedules me for another scan the following week, so we can monitor whether there’s been any change: in other words, whether the products of conception, as the embryo is now known, have been partially or even wholly expelled. After the scan, she says, we can decide how to proceed; you don’t need to make any decisions now. Good, I think, though I’m a little hazy on exactly what kind of decision I might be called upon to make; she has described the various forms of intervention but I can’t quite situate them in relation to my own body, my own products of conception.

She is very young, the doctor, soft-­spoken, apologetic. She says to call if anything changes before my next appointment, if I have any concerns. She gives me a business card, circles a phone number that’s operational 24/7. To minimise the risk of infection, she adds, seemingly as an afterthought, you shouldn’t take baths or swim.

No swimming. Of course. But I am thrown by the thought of this: the removal of the most obvious physical coping mechanism I have for dealing with what is essentially an entirely uncontrollable physical situation. I realise I’ve said this out loud without really meaning to. A silence falls, either respectful or uncomfortable.

I’m a swimmer too, the doctor says suddenly, as I’m standing to leave, abandoning, briefly, her professional distance. I’d hate not to be able to do it.

After the appointment we walk to a Starbucks near the hospital. It’s dark and anonymous inside, and smells of sweet pastries and wee. I order a latte, two shots, why not, and we sit at a counter at the window, watching buses trundle by. It’s mid­-morning and the place is full of new mothers and their prams, though occasionally someone in scrubs or a suit hurries in and then out again. Alexander texts his boss to say he won’t be coming in to work today. Not just the day but the month, the year, stretches out before us, suddenly open. What will we do with it? What can we do? The coffee is too hot, tasteless, the milk burned, but I suck it down in a rush, turning the inside of my mouth furry. Before all this, the test, the pregnancy, the ungrowing embryo, we were planning a wedding; we had set the date, hired a venue, made arrangements with the registrar. We should have cancelled everything – my due date was too close to the wedding date – but we never did; too superstitious, or preoccupied, or both. Now, of course, I say, devastated, amused, we won’t need to change the date. We can simply pick up where we left off. I feel myself begin to rewrite the map again, to slip in and out of familiarity with myself and my surroundings. There’s a simplicity to it all, underneath the ambiguity, the anguish, that makes me almost giddy: for what is this but a reversion to my natural state, a return to old routines?

A thought – terrible, comforting – hits me square in the face then, that there’s relief to be felt. The awful thing, the dreaded thing, has happened, and I need no longer fear it. I hate myself for feeling this but can’t let go of it, either, because I think it’s a way forward, a way out, a small tremble of light.

* * *

The second scan is no more or less enlightening than the first: there is still an embryo, there is still no heartbeat. No change, in other words: an unwanted stillness.

The doctor gives me a leaflet, which outlines in clinical language the three ways of managing a miscarriage when preg­nancy tissue remains in the womb: expectant, medical, surgical. The first is the wait-­and-­see approach, taken on the assumption that the tissue will pass naturally out of the womb with time. The second involves taking a course of medication to stimulate the passing of the tissue out of the womb: a potentially painful, lengthy, and often messy process, not always entirely effective, sometimes necessitating the third approach anyhow, which involves surgical removal of the tissue.

I still don’t know how to decide what to do, so I put it off: if nothing’s happened in a few weeks I’ll opt for some kind of intervention. I want above all to trust my body to do whatever needs doing, but already it’s betrayed me once, so what do I know?

Still no swimming, obviously, the doctor says sadly. Other­wise, proceed as normal.

As normal. Nothing is normal, I start to think – but then again, in a kind of terrible way, everything is normal again, isn’t it?

* * *

The present­-tenseness of the event, the miscarriage, which is not so much an event as a continual unfolding of uncharted territory, a vast grey area, makes it virtually impossible to talk about in any way that makes sense of what is actually happening. I don’t know what to tell people because the language I have is not elastic enough to encompass something which is past, present and future all at once. So I do what the doctor suggests: I proceed more or less as normal, going to meetings, going to the supermarket, scrolling mindlessly through Twitter, doing the laundry, eating, sleeping, working. I let myself lose track of time. At one point, in a notebook, next to a to-­do list, I write: The calendar is a kind of enemy, reminding me of the facts of things, the time it is actively taking to go through this process of miscarriage. I take to walking – long, slow strolls at the very edge of dusk, through parks and quiet suburban neighbourhoods that smell of woodsmoke and exhaust fumes. I feel my muscles going slack, and an irrational fear grows daily: what will my body become while I can’t swim?

My fear is really a form of vanity. I know that with each day or week that passes without a swim my body will start to look subtly different. I’ll lose, am losing, the public indicators of my fitness – the muscle, the shape of my arms and legs, the things that say to other people that I’m disciplined, that my body is under control. And I don’t want them to see what I know: that nothing is under control, that this body is not working properly, that athletically, reproductively, it is not doing at all what it’s supposed to do.

Mostly, though, if we’re honest, it’s the changes in our bodies that are in control of us, not the other way round.

Words come to me on my walks, as they used to on my swims. Some of them are obvious. Why is this happening to me? I think selfishly, inevitably, as I climb the hill to the park on a soft bed of wet leaves, fresh-­fallen after a night of howling wind. But other things, too, drifting like the smoke and the fumes. Disobedience. Betrayal. Softening, slackening, slowing. Undisciplined. Back at home, in my notebook, I write: I guess I feel disconnected from a part of myself. Not that I’m not still the same person or can’t be again, but that for a while I and some other part of me are not quite coinciding. I’m talking about the swimming, not the miscarriage, or at least ostensibly I am. I have a deep sense of geographical dissonance, like a dream of a familiar place in which the location of everything is slightly wrong, so that you round the corner and suddenly come upon a street that should be miles away, or discover that all along there has been an extra room in your house.

One Sunday afternoon, sitting in a booth at my local pub, I see a woman I used to see most weekday mornings at the pool; she always wore a bright pink cap, a navy swimsuit. She’s about my age, sitting with a friend, eating lunch. Perhaps it’s her local too, I think, for the first time realising, stupid as it sounds, that these people I’ve been brushing up against at the pool are people with lives outside that context, just like me.

Occasionally I log on to Facebook and check the page for the triathlon club I belong to. I look through the list of times from a recent 400-­metre time trial, spotting familiar names, noting the improvements, and wonder how much I, too, could have improved by now. For a moment I’m gripped by something which feels a little like jealousy but isn’t quite – desire, perhaps, something almost carnal. But then the desire, or whatever it is, fades: I’m here now, and maybe, if I can admit it to myself, I’m actually a little relieved that I’m not sweating away in a pool, that I don’t have to worry about how fast or smoothly I can cut through the water, how hungry I’ll be later, how tired.

* * *

The poles of the earth have wandered, the journalist John McPhee once wrote: even that which seems most permanent and solid is, in its own way, shifting. It’s true literally – think for example of the tectonic plates, the movement of the continents, which still, on average, drift a few centimetres a year apart, about the rate at which our fingernails grow, as the geographer Doreen Massey frames it, a reminder that the body is never in stasis either. In other words the whole world is a continual work in progress; the present is not some kind of achieved terminus, Massey writes. To underline this idea, she describes the slow movement of what she calls the ‘migrant rocks’ that came, over the course of millions of years, to form Skiddaw in the Lake District. Solid and eternal as it seems, she says, the mountain is not timeless. Like she and her sister, staying in a hotel in Keswick, it’s just passing through. It was once elsewhere. It will be elsewhere again someday.

It’s easy to lose your footing here, to feel that nothing is solid, but I’ve always found something comforting about this idea that place is essentially unfixed. The rigidity of permanence would be too much to bear, surely: who wants to be stuck in the same place forever? Who can know and love anywhere and not see that a point on a map is one thing, a living, breathing place quite another?

It’s a concept that scales well – if the world is a work in progress, then so too is a city or a street or a swimming pool. So too is the body, which is, after all, as the poet Adrienne Rich puts it, the geography closest in; it’s the first place, the place we must make peace with – subject, like all places, to the pressures of time, of external rhythms and events, changing from moment to moment, year to year, getting older, bigger, smaller, more or less capable of performing certain tasks, more or less like it was at the beginning.

There’s a simplicity to it all, underneath the ambiguity, the anguish, that makes me almost giddy: for what is this but a reversion to my natural state, a return to old routines?

Sometimes we’re in control of that change, or we think we are. Exercise in particular gives us the illusion of power over our own physical futures. Take your recommended thirty minutes of activity a day and stave off all kinds of bodily evil. Lose a bit of weight, add a bit of muscle, establish a routine, live forever, or longer, anyway. The geographer John Bale wrote of exercise as a literal form of recreation: through time, repeated action, the body is re-­created so that it works better. It incorporates knowledge, becomes stronger, fitter. Progress. Maybe next week, or the week after, I’ll be faster than I was last week. All it takes is discipline, resolve, another few thousand metres racked up. Most of all denial: of the body that wants, of the possibility of vulnerability or limitation. A few years ago, I remember, I became obsessed with watching Olympic swimming races; I trawled YouTube, read interviews with the athletes, fascinated by all their talk of sacrifice and discipline. And isn’t this why I watched in the first place? To see what happens when we write certain kinds of want out of our body, and one singular, possessive, demanding want into it: to be the best, the fastest, the one standing on the highest platform of the podium?

Mostly, though, if we’re honest, it’s the changes in our bodies that are in control of us, not the other way round. The fact of the matter is that not that long ago, my body was capable of run­ning 13.1 miles, of swimming 3,000 metres without complaint; not that long ago, my body was actually hosting another body, or the beginnings of one.

And now everything is different, and everything will be different again someday, and different again, and different again.

This excerpt has been lightly adapted for publication on Longreads.

* * *

Miranda Ward is a freelance writer, editor, and lecturer. Her memoir Adrift: Fieldnotes from Almost-Motherhood is published by Weidenfeld & Nicolson in the UK. She grew up on a cattle ranch in California and now lives in Oxford.

Editor: Cheri Lucas Rowlands

Ten Outstanding Short Stories to Read in 2021

Author Kelly Link (Photo by Awakening/Getty Images)

The #longreads hashtag on Twitter is filled with great story recommendations from people around the world. Pravesh Bhardwaj is a longtime contributor — throughout the year he posts his favorite short stories, and then in January we’re lucky enough to get a list of his favorites to enjoy in the year ahead.

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Longreads Best of 2020: Arts and Culture

All Best of Longreads illustrations by Kjell Reigstad.

All through December, we’re featuring Longreads’ Best of 2020. In an unprecedented, strange, and chaotic year, we’ve leaned on writers’ reflections and commentaries on the world around us to help us make sense of moments, of our lives. We revisited a wide range of arts and culture stories featured by the team this year and selected eight favorites that resonated with us.

If you like these, you can sign up to receive our weekly Top 5 email every Friday.

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I’ve always loved how Teju Cole observes and moves through our world: a flâneur of modern life, always with a notebook or a camera in hand. Here, we follow Cole on a pilgrimage to Italy as he chases the life of Caravaggio, an artist (and fugitive and murderer) whose emotionally charged, often violent scenes and chiaroscuro technique I studied closely in my AP Art History class. In Rome and Milan, Cole revisits Caravaggio’s paintings “to learn the truth about doom” — to sit with unease, and to experience the artist’s pain and turmoil (“I would find in him the reprieve certain artists can offer us in dark times”).

Cole then travels south, to Naples and along the coast of Sicily, and later to Malta, to the places where the painter spent his exile; he captures both the mundanity and intimacy of encounters with guides and strangers, like his meeting in Syracuse with D., a young migrant who arrived by boat from Libya eight months earlier. (They share a silent, beautiful moment with “The Burial of St. Lucy.”) Part-travelogue, part-profile, part-art criticism, and part-commentary on the ills and horrors of our world, it’s a stunning piece with masterful scope, but also turns inward — a read you’ll likely sit with quietly long after you’ve finished.

I sat on a bench in the middle of the room, the two paintings set at a right angle to each other. I was awe-struck, out of breath, caught between these two immensities. The very act of looking at an old painting can be so strange. It is an activity that is often bound up with class identity or social aspiration. It can sometimes feel like a diverting, or irritating, stroll among white people’s ancestors. It can also often be wonderful, giving the viewer a chance to be blessed by a stranger’s ingenuity or insight. But rarely, something even better happens: A painting made by someone in a distant country hundreds of years ago, an artist’s careful attention and turbulent experience sedimented onto a stretched canvas, leaps out of the past to call you — to call you — to attention in the present, to drive you to confusion by drawing from you both a sense of alarm and a feeling of consolation, to bring you to an awareness of your own self in the act of experiencing something that is well beyond the grasp of language, something that you wouldn’t wish to live without.

He was a murderer, a slaveholder, a terror and a pest. But I don’t go to Caravaggio to be reminded of how good people are and certainly not because of how good he was. To the contrary: I seek him out for a certain kind of otherwise unbearable knowledge. Here was an artist who depicted fruit in its ripeness and at the moment it had begun to rot, an artist who painted flesh at its most delicately seductive and most grievously injured. When he showed suffering, he showed it so startlingly well because he was on both sides of it: He meted it out to others and received it in his own body. Caravaggio is long dead, as are his victims. What remains is the work, and I don’t have to love him to know that I need to know what he knows, the knowledge that hums, centuries later, on the surface of his paintings, knowledge of all the pain, loneliness, beauty, fear and awful vulnerability our bodies have in common.

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Longreads Best of 2020: Writing on COVID-19

All Best of Longreads illustrations by Kjell Reigstad.

All through December, we’re featuring Longreads’ Best of 2020. This year, our editors featured many COVID-19 stories from across the web, and below, we’ve narrowed down 11 picks that really resonated with us. This roundup is focused on reported features; we initially included a few pandemic essays in this category, but those will instead appear in the upcoming Best of Essays list. 

If you like these, you can sign up to receive our weekly email every Friday.

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How the Pandemic Defeated America (Ed Yong, The Atlantic)

The Atlantic‘s coverage of COVID-19 was exceptional this year, and Yong’s deep, thoughtful September feature lays it all out. How did the U.S. get here? Everything that went wrong was predictable and preventable, and despite all of its resources and scientific expertise, America’s leaders failed monumentally to control the virus at every turn.

The coronavirus found, exploited, and widened every inequity that the U.S. had to offer. Elderly people, already pushed to the fringes of society, were treated as acceptable losses. Women were more likely to lose jobs than men, and also shouldered extra burdens of child care and domestic work, while facing rising rates of domestic violence. In half of the states, people with dementia and intellectual disabilities faced policies that threatened to deny them access to lifesaving ventilators. Thousands of people endured months of COVID‑19 symptoms that resembled those of chronic postviral illnesses, only to be told that their devastating symptoms were in their head. Latinos were three times as likely to be infected as white people. Asian Americans faced racist abuse. Far from being a “great equalizer,” the pandemic fell unevenly upon the U.S., taking advantage of injustices that had been brewing throughout the nation’s history.

Inside the Nightmare Voyage of the Diamond Princess (Doug Bock Clark, GQ)

Another devastating read, “The Pariah Ship” by Michael Smith, Drake Bennett, and K. Oanh Haat, recounts the nightmare journey of Holland America’s MS Zaandam.

The pandemic has exposed the flaws of tourism, and cruise ships are a symbol of the disastrous effects that COVID-19 has had on the travel industry as a whole. Princess Cruises’ Diamond Princess, which departed on January 20 this year from Japan’s Port of Yokohama, was the first ship to suffer a major outbreak. Clark’s account of the voyage and subsequent quarantine of the ship’s 3,711 passengers and crew is riveting yet terrifying. He weaves stories of numerous people on board, from the more-privileged (a pair of traveling couples called the “Four Amigos”) to the overworked and underprotected (like security crewmember Sonali Thakkar). His reporting of the U.S. government’s response is superb, especially from the perspective of Dr. James Lawler, the infectious-disease expert called in to lead the evacuation of American passengers back to the U.S. We also get a glimpse of what the experience is like for the ship’s captain, Gennaro Arma, who was eventually the last person to disembark.

The Amigos, reduced now to three, along with the 325 other American evacuees, were still waiting on the buses. They had spent three hours idling on the pier and then, once they drove to the airport, sat on the tarmac for two more hours. Now, as the delay extended into a sixth hour, the passengers were nearing revolt. They were exhausted. And more problematically for the largely elderly passengers: The buses had no bathrooms.

Meanwhile, in Washington, D.C., where it was still Sunday afternoon, the fate of the waylaid evacuees was being decided. Around the time the passengers were exiting the Diamond Princess, Japanese officials had blindsided their American counterparts with the news that some of the passengers boarding the buses had actually tested positive several days before. Soon many of the highest-level members of the Trump administration’s coronavirus response team, including Dr. Anthony Fauci, were arguing about what to do. Representatives from the CDC continued to fear spreading the virus. William Walters, the deputy chief medical officer for the State Department, wanted to bring everyone home anyway. Those urging the evacuation noted that the planes had been prepared with isolation units to contain the sick.

As the debate raged, the evacuees were demanding to be let off the buses, quarantine be damned, to find a bathroom. Carl was breathing so hard his masked breath fogged his glasses as he strained to control his bladder. Some seniors were crying. Finally, a few were allowed to relieve themselves in bottles beside the bus or were brought to a nearby terminal.

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