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The Top 5 Longreads of the Week

Michael K. Williams on March 31, 2021 in Miami, Florida. (Photo by Rodrigo Varela/Getty Images)

This week, we’re sharing stories from Anand Gopal, Óscar Martínez, Erica Lenti, T.J. Quinn, and Matt Zoller Seitz.

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1. The Other Afghan Women

Anand Gopal | The New Yorker | September 6, 2021 | 9,900 words

“In the countryside, the endless killing of civilians turned women against the occupiers who claimed to be helping them.”

2. Mourning the Dead, and Fighting for the Living

Óscar Martínez | El Faro | August 27, 2021 | 7,800

“New York was one of the states hit hardest by the pandemic in the United States. The hundreds of thousands of undocumented migrants who live there suffered both the virus and its ravages: mass graves, widespread contagion, hunger, debt, overcrowded housing, unemployment—just some of the legacies of 2020. After years of struggle, many must start all over again.”

3. Cases of Missing Trans People Are Rarely Solved. A Married Pair of Forensic Genealogists Is Hoping to Change That.

Erica Lenti | Xtra Magazine | September 1, 2021 | 3,645 words

“Resolving any Doe case is, at its core, about restoring dignity to the dead. But that is especially pertinent in cases of trans and gender nonconforming people, who are routinely harassed, sexualized, overpoliced and dehumanized. The TDTF’s work is also about restoration, righting the historical wrongs of institutions that have overlooked trans people. It is not easy work, but the Redgraves consider it necessary. If we want to begin the process of undoing decades of harm that systemic transphobia has caused, they say, this is one painful but crucial place to begin.”

4. “Is This My Life Now?” Justin Foster’s—and My—Struggle With Long-Haul COVID

T.J. Quinn | ESPN | August 16, 2021 | 6,670 words

“From our first conversation, we connected about what it was like to suddenly no longer be yourself, and the constant self-doubt that came with it. If we can’t do the things we used to do, then who are we?”

5. Death of a Storyteller

Matt Zoller Seitz | Vulture | September 7, 2021 | 3,450 words

“Rare is the actor who can locate the specific in the universal and vice versa. Michael K. Williams was that actor.”

A Sketch Artist, a Grieving Mother, and An Unsolved Mystery

Michael Marsicano for The Atavist Magazine

Nile Cappello | The Atavist Magazine | August 2021 | 7 minutes (1,994 words)

This is an excerpt from The Atavist‘s issue no. 118, “The Girl in the Picture,” written by Nile Cappello and illustrated by Michael Marsicano.

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

 

PART ONE

For most residents of Holland, Michigan, there was nothing remarkable about March 11, 1989, a Saturday. Frost on the ladders of the city’s water towers thawed in the sun—spring was just over a week away. Mothers poured milk over cereal for kids watching back-to-back episodes of their favorite cartoons. Fathers who worked weekends drove pickup trucks to industrial jobs at local automotive and concrete companies.

But all was not well in the house on the corner of Lincoln Road and 52nd Street. It belonged to Dennis and Brenda Bowman, a married couple with two children. For the Bowmans, March 11 marked the last time they saw their 14-year-old daughter, Aundria, alive.

Dennis was the one who contacted the police. He told them that he’d come home from his job as a wood machinist to find Aundria missing, along with some of her belongings and $100 from his dresser. Dennis described Aundria—whom he and Brenda had adopted when she was an infant—as a troubled teenager who frequently fought with her mother and had run away to a friend’s house once before.

Dennis agreed to call around to the homes of kids Aundria knew to find out if anyone had seen her. But his wife soon took over as the family’s point of contact. It was Brenda who called the police regularly, and Brenda who corrected the amount of cash missing from her husband’s dresser to $150. That was enough for police to issue a warrant for Aundria’s arrest for larceny; the warrant listed Dennis as the victim of his daughter’s alleged crime.

With no foul play suspected, the police labeled Aundria a runaway and passed her case along to the Youth Services Bureau. Few people who knew the Bowmans questioned the official narrative. Over the years, there had been whispers about the family. Once, when Aundria was in middle school, she boarded the school bus bleeding from her wrist. Some kids gossiped about a suicide attempt, but others said Aundria had cut herself trying to get back into her house after her parents locked her out. There were rumors that Dennis, a former Navy reservist with reddish-brown hair, a goatee, and wire-rimmed glasses, and Brenda, a portly woman with curled bangs who’d once worked at the jewelry counter at Meijer department store, abused Aundria. But back then, what happened behind closed doors was considered family business.

Fifteen months before Aundria disappeared, Brenda gave birth to a daughter, Vanessa. Aundria went from being an only child to more than a big sister—she was a third parent to the chubby, redheaded baby. While other kids her age went to afterschool clubs and Friday night football games, Aundria stayed home changing diapers and cleaning bottles. She kept a photo of her sister in a school folder, where other teens might stash a magazine cutout or a polaroid of their crush. When she wasn’t with Vanessa, Aundria was anxious about the baby’s well-being.

Many people in Holland assumed that Aundria had gotten so fed up with her home life that she finally split. Maybe she’d gone looking for her birth mother. People heard that she’d hitched a ride at a local truck stop, had left town with an older boy, or was pregnant.

Brenda reported a series of tips in the weeks and months following her daughter’s disappearance, all of which seemed to confirm that Aundria had run away. At the end of March, Brenda claimed Aundria had been spotted at a 7-Eleven. In mid-April, Brenda said she received an anonymous call from someone claiming that police were looking for the teenager in the right area, but on the wrong street—whatever that meant. In June, she reported a sighting at a local property, where Aundria had supposedly been hanging out with a group of young men. And in October, Brenda said a friend had seen Aundria, pregnant and with dyed hair, in a line at Meijer. Police investigated but found nothing.

Aundria’s classmates went to prom and graduated, then got jobs or headed to college. Eventually they married and had children of their own. But Aundria remained forever 14. A single photograph formed most people’s memory of her. It was given to police when she first vanished. In it, Aundria is sitting against a blue studio backdrop and looking just off camera, with her green eyes cast hopefully upward and pieces of her dark, shaggy hair hanging over her forehead. Her smile is charmingly off-balanced. She looks suspended between adolescence and adulthood.

Photos of missing children were often printed on the sides of milk cartons or on flyers taped to the top of pizza delivery boxes. Aundria’s picture wound up somewhere else. In 1993, the band Soul Asylum debuted a music video for its song “Runaway Train,” featuring the images and names of missing kids across America. The video was a huge hit, with several versions airing on MTV and VH1. In the one that played in Michigan, Aundria’s photo appears just after the two-minute mark.

Reflecting on the video 20 years after its release, director Tony Kaye claimed that more than two dozen missing children were found because of the video. Aundria Bowman wasn’t one of them.

Back then, what happened behind closed doors was considered family business.

 

Carl Koppelman never expected to solve mysteries. He worked as an accountant until 2009, when his mother’s health began to decline. At 46, Koppelman became a full-time caregiver, and his days, once filled with reviews of spreadsheets and financial statements, now revolved around driving to doctor’s appointments and administering medications. When he wasn’t tending to his mother, Koppelman was online, exploring message boards, news sites, and social media. At the time, the story dominating headlines, and bordering on popular obsession, was the return of Jaycee Dugard.

In 1991, Dugard had been kidnapped while walking to a bus stop near her home south of Lake Tahoe, California. The blond, freckled 11-year-old was the subject of a nationwide search, but eventually the case went cold. Then, on August 26, 2009, Dugard reappeared. For 18 years, convicted sex offender Philip Garrido and his wife, Nancy, had held her captive at their home in the town of Antioch, more than 150 miles from where they’d kidnapped her. Dugard had given birth to two of Garrido’s daughters, who were now 11 and 15. To the embarrassment of local authorities, parole officers had visited the Garridos’ home several times during the years Dugard was missing. They’d failed to check the backyard, where the young woman was kept in a network of tents, lean-tos, and sheds.

Koppelman’s interest in the Dugard case led him to Websleuths, a forum where crime hobbyists and armchair detectives connect and collaborate on unsolved cases. Koppelman gravitated to posts about cold cases, the ones least likely to ever be solved. Until recently, Dugard’s had been one of them. How many more would benefit from fresh eyes and a little persistence?

Koppelman spent countless hours scrolling through the national database of missing persons and unidentified bodies, known as NamUs. There’s overlap between the two main parts of the database, the disappeared and the deceased—the trick is finding it. During late nights at his computer, in a dimly lit corner of his mother’s suburban home in El Segundo, California, Koppelman would try to match the characteristics of people who had gone missing with those of the unidentified dead. Finding a likeness could be enough to generate a tip for law enforcement.

When Koppelman noticed that the age and condition of some bodies might make it difficult for loved ones to recognize them, it sparked an idea: Koppelman liked to draw portraits for fun, and he was pretty good at it. He also had a CD-ROM of the image-editing software CorelDRAW, which someone had given to him as a gift. One day, with his mother napping in the next room, Koppelman installed the program on his computer. It was his first step toward becoming a forensic sketch artist.

He started creating lifelike renderings of Jane and John Does based on photos taken postmortem. He used CorelDRAW to open eyes, fill in sunken cheeks, and give faces more dynamic expressions. In complicated cases, where bodies had decomposed, he re-created facial structure. The goal was to make the dead more recognizable—to loved ones searching for them, and to police trying to identify them. Once he finished a rendering Koppelman sent it to NamUs, and the database would sometimes publish it. He also posted his work on Websleuths so other armchair detectives could use it in their identification efforts.

Eventually, Koppelman began working with police departments and the DNA Doe Project, which identifies human remains through genetic testing and genealogical research. Glad to help law enforcement generate leads and, in some instances, put a name to a face, Koppelman was almost always an unpaid volunteer. His renderings were instrumental in solving several cold cases, including the identification of the Caledonia “Cali” Jane Doe (Tammy Jo Alexander) in 2015.

But before all that, in 2009, when he was just starting out as an amateur sleuth, Koppelman got interested in the case of the Racine County Jane Doe. When she was found near the edge of a Wisconsin cornfield in 1999, the young woman had only been dead about 12 hours, but rain had washed away any evidence that might have been useful to investigators. It seemed likely that the young woman had been murdered elsewhere and dumped. An autopsy determined that she may have been cognitively disabled, and that she had suffered long-term abuse and neglect: She had broken bones and a cauliflower ear, and her body showed signs of sexual assault. More than 50 people from the farming community where she was found attended her funeral. But no one knew her name or what had happened to her. Her gravestone read “Gone, But Not Forgotten”—a hope more than a description.

Koppelman read everything he could find about the Racine County Jane Doe, combing through news articles and social media. He learned that she had hazel-green eyes, two piercings in each ear, and short reddish-brown hair. She was five-foot-eight and 120 pounds, and estimated to be between 18 and 30 years old. She was found wearing a men’s gray and silver western-style shirt embroidered with red flowers—a design, the manufacturer told police, from the mid-1980s.

On NamUs, Koppelman plugged in some general search criteria—gender, age, location—and clicked through the results for missing persons. With each one, Koppelman asked himself, Could this be her? In most cases, the answer was a clear no. The age didn’t match, or the location made no sense. But one entry gave Koppelman pause: Aundria Bowman.

Aundria and the Racine County Jane Doe shared physical characteristics, and their ages aligned: Aundria would have been 25 in 1999, when the Jane Doe was killed. Holland, where Aundria disappeared, sits directly across Lake Michigan from where the Jane Doe was found—it’s just four hours by car from one location to the other, tracing the lake’s southern shoreline and passing through Chicago. To test the possible identification, Koppelman created a composite image, superimposing Aundria’s photo with ones from the Jane Doe’s autopsy. He marked the similarities in red.

Koppelman took his theory to law enforcement, who found it compelling enough to investigate. To determine whether the Jane Doe was Aundria, police would need to compare DNA from the body with that of someone in Aundria’s family. Because Aundria was adopted, authorities had to track down her birth mother. Koppelman knew that could take a while, or that it might never happen, forcing investigators to find other avenues for identification.

As the police did their part, Koppelman kept poking around online, learning what he could about Aundria. One day at the end of 2012, he came across a Classmates.com page for Aundria—the premium kind you have to pay to keep active, in order to connect directly with former school acquaintances. Was this Aundria, alive and well, and trying to find old friends? And if it wasn’t her, who was it?

Read the full story at The Atavist

The Cult That Promises to Cure Addiction

Benjamin Rasmussen for The Atavist Magazine

This is an excerpt from The Atavist‘s issue no. 115, “The Love Bomb,” by Daniel Kolitz.

Daniel Kolitz| The Atavist | July 2021 | 10 minutes (2,100 words)

Prologue

On Super Bowl Sunday, three weeks into the 1980s, Dave Cherry had the house to himself. The 15-year-old was sprawled out on his parents’ gold bedspread watching the game, but on the list of things he cared about—Led Zeppelin, the possibility of alternate dimensions, acquiring and inhaling tremendous quantities of weed—football barely ranked. Inertia, a sense of having nothing better to do, was the only thing that kept him watching.

When the game ended, the network cut to Dan Rather, his posture as rigid as his hair. Rather introduced the subject of that week’s 60 Minutes episode: the Palmer Drug Abuse Program. “Few people outside of Texas had ever heard of PDAP,” Rather intoned, “until People magazine reported that Carrie Hamilton, the 15-year-old daughter of TV star Carol Burnett and producer Joe Hamilton, had become a drug addict, and that her parents had sent Carrie to PDAP, where she kicked her habit.”

Cherry, who lived in the suburbs of St. Louis, wasn’t familiar with PDAP, nor with Carrie Hamilton’s recovery, despite Burnett and her family making the daytime talk-show rounds—Dinah Shore, Phil Donahue—to praise the program and its founder, a recovering addict and alcoholic named Bob Meehan. “Some see Mr. Meehan as a miracle worker,” Rather said, “bringing God and clean living back into young people’s lives. Others say he gets those youngsters dependent on him and PDAP in place of their former dependence on drugs and alcohol.”

Meehan appeared on screen, looking like someone’s hazy misconception of 1970s cool: wide white sideburns, bushy blond goatee. Fury seemed to flash behind his orange-tinted aviators. Cherry, the son of strict Southern Baptists, was suddenly interested. Meehan was precisely the kind of guy his parents would despise.

“Now, I’m saying, this program works for a group of people. If it doesn’t work for you, try another one!” Meehan told 60 Minutes. “We’re not controlling you in any way, shape, or form. You don’t like it, leave!”

Meehan called his method of treating substance abuse Enthusiastic Sobriety, or ES. It was a kind of Alcoholics Anonymous for teenagers; it emphasized community and spirituality, but also insisted that participants needed to have fun. Cherry watched footage of cozy group confessionals and larger meetings that looked like pep rallies. Kids traded shoulder squeezes and looks of fervent understanding. A pretty woman, maybe 20 years old, cradled a younger boy’s head as another woman thanked him for filling a void in her life. “I love you,” she said, prompting claps and cheers from the people gathered around her.

A lonely kid, Cherry felt a stir of longing.

Meehan was so animated that, beside him, Rather looked like an expensive wax statue. When Rather questioned him about his $100,000 annual income, a combination of his PDAP salary and payments from a company that ran hospitals where PDAP referred teenagers for inpatient treatment, Meehan grinned. “If I wasn’t making money, you wouldn’t be here today, partner!” he said. Pressed for evidence of the high success rates PDAP touted in its advertisements, Meehan delivered a wandering monologue on the perils of methadone and the definition of success before telling Rather that if 60 Minutes or its host would like to give him $75,000 to conduct a study, he’d be happy to take it.

“Are you saying to me that you don’t have any data to back up your claim that you’re 75 to 80 percent successful?” Rather asked.

“The data we have is quite different from data anybody else has,” Meehan said.

“But when you boil it down, what you’ve got is a guess,” Rather pressed.

“Oh definitely,” Meehan said, inscrutable. “Definitely a guess.”

Rather presented dissenting opinions, from sources who described an environment that seemed designed to keep PDAP participants in thrall to Meehan. A mustached man in a tan leather jacket said that people were being “led to believe that we can’t make it without the program,” prompting Rather to remark, astonished, that this would make participation “never-ending.” Confronted with the notion that PDAP was manipulative and opportunistic, Meehan became even more energetic. “I’ve been a con all my life,” he told Rather. “Just, now I’m using it in a good way, see?”

The segment was in no uncertain terms a takedown. It aired on the highest-rated news program in the country, directly after the biggest event on TV. It should have been Bob Meehan’s undoing. But it wasn’t.

Over the next 40 years, Meehan proved to be a skilled shapeshifter and profiteer. Enthusiastic Sobriety, which as it turned out was even more destructive than 60 Minutes revealed, spread well beyond PDAP. It evolved, taking various names and forms; when one door closed, Meehan found another to open. Recovery programs that he ran or wielded influence over enrolled thousands of young people across the United States. Today, ES outfits run by members of Meehan’s inner circle still exist in Arizona, California, Colorado, Florida, Georgia, Missouri, and North Carolina.

ES also ensnared staff and some clients in what people who’ve abandoned it now call a cult. Meehan and his closest confidants—a group dubbed the Family—controlled every aspect of members’ lives. The story recounted here draws on interviews with 65 former clients, counselors, and loved ones of people involved with ES from its origins in the 1970s through to the present day. Their experiences echo those described in an active online community of former ES followers, who use Facebook and other social-media platforms to tell their stories. Some subjects spoke to The Atavist Magazine on condition of anonymity.

Flopped on his parents’ bed in 1980, Dave Cherry couldn’t have guessed the outsize role he’d one day play in ES, or the extent to which Meehan would come to dominate his life. Years would pass before the two even met. All Cherry knew on that Super Bowl Sunday was that he liked the guy. He thought Dan Rather had given Bob Meehan a raw deal.

***

Part One

Hard facts about Meehan’s life before PDAP are scarce, but he always told a compelling origin story—how he first shot heroin at 16; how the habit soon compelled him to pawn his parents’ furniture; how they committed him to a psychiatric ward; how he escaped and spent the next ten years on and off the streets, using not only heroin but also codeine, quaaludes, cocaine, speed, and alcohol. During this period, according to several people who knew Meehan, he claimed to have robbed several pharmacies, killed several men, and played drums in several small-time jazz ensembles.

In Meehan’s telling, his luck changed in 1971. Released from a Kentucky prison cell, he wound up in Houston, digging ditches for Rice University. At 27, he was mostly toothless—he wore dentures—and bald, save for a grimy curtain of hair running from the peak of his scalp down to his shoulders. A Fu Manchu mustache drooped past his chin. He’d mostly stopped using drugs but still wrestled with booze, and after another short stint in jail, this time for burglary and public drunkenness, he began attending Alcoholics Anonymous meetings at Palmer Memorial Episcopal Church.

The gatherings were presided over by Father Charles Wyatt-Brown, a soft-spoken priest beloved by his community. Wyatt-Brown took a liking to Meehan, who was outspoken in meetings. The two began having lunch together. Wyatt-Brown soon hired Meehan as his church’s janitor.

Teens made regular use of the church in those days, playing Frisbee on the grounds and popping inside to use the bathroom. Some of them were drug users, and Wyatt-Brown encouraged Meehan to befriend them, hoping he might set them on a better path. In fact, Wyatt-Brown said, Meehan’s attention was better spent helping children than vacuuming hallways.

Meehan was singularly charismatic, a perpetual motion machine with a comic’s timing and a gift for connecting with kids. It helped that he chain-smoked, cursed incessantly, and had a vast supply of dirty jokes and prison yarns to keep them entertained. Soon, with Wyatt-Brown’s permission, six young people began meeting regularly with Meehan in the church’s basement. They played cards, complained about teachers, talked about crushes. Sometimes Meehan took to the piano, leading sing-alongs. Within six months, the group’s ranks had expanded to 40, and Meehan was formally promoted to the role of youth counselor. Another six months later, attendance had reached 250, and Wyatt-Brown established the Palmer Drug Abuse Program as a nonprofit, with a board of directors to facilitate the program’s growth. Meehan was made director.

Meehan didn’t have formal qualifications to run a drug-treatment program. What he had was life experience and an eye for demand. White middle-class Americans shaped by the promise and comforts of the postwar era were terrified that substance abuse would steal their children’s future. The war on drugs began in 1971, with Richard Nixon declaring illegal substances “public enemy number one.” Within a few years, the so-called parent movement, which preached zero tolerance of marijuana, narcotics, and alcohol, would spread across the country. But Meehan recognized that a top-down approach wasn’t likely to appeal to kids. What rebellious teenager does what their parents or president tells them to do?

Meehan started developing Enthusiastic Sobriety, which was both a theory and a practice. In order to entice teens, he believed, clean living needed to be just as fun—and just as reckless—as the alternative. If teens wanted to grow their hair long, smoke cigarettes, stay out all night, or even drop out of school, parents should let them—whatever kept them off drugs and alcohol was a good thing. Thus liberated, kids could enter the alternate social world of PDAP, which had its own dances, campouts, and house parties, all of them substance-free.

Spirituality was part of PDAP’s deal; much like AA, the program was rooted in the possibility of redemption. If that didn’t seem cool to teenagers, Meehan would be the first to tell them they were wrong. He believed that peer pressure was what drove young people to experiment with drugs and alcohol, and he aimed to use the same tactic to keep them sober. As soon as they walked in the door of a meeting, PDAP newcomers were smothered in hugs and people saying “I love you.” The tactic, called “love bombing,” is now widely recognized as a method for luring people into cults. One PDAP participant recalled thinking, “These guys are like the Hare Krishna or something. They’re going to try to make me sell flowers at the airport next week.”

In the program’s early days, Meehan met and married Joy DeFord, a diminutive, dark-haired divorcée who ran Palmer Memorial’s Alateen program, for teenagers who had alcoholics in their families. Joy came across as a polished Southern belle, a calm counterpoint to her manic husband, though she had quirks of her own, including an interest in hypnotism and homeopathy. The Meehans had a daughter and informally adopted a PDAP participant named Susan Lowry. Joy began running PDAP’s parent group, which held meetings each week. Hers was an essential role—PDAP’s smooth functioning depended on parents buying into the developing ES methodology.

PDAP could be a tough sell for parents. Beyond the smoking and the late nights, there was the fact that PDAP’s counselors looked like they could have been former drug dealers. Some of them were former drug dealers. One young man showed up for his first PDAP meeting, struck up a conversation with a counselor, and quickly realized that he’d “bought dope from the guy before.” When the adults balked about who was supervising their kids, Joy calmed them down. A common refrain was “Would you rather they were dead?”

PDAP was free, funded entirely by community donations. Participants had to commit to 30 days of sobriety, during which they would attend frequent meetings. They could keep coming to PDAP after that—in fact, they were encouraged to make the program the permanent anchor of their existence. Meehan, a fervent follower of AA, implemented a version of the 12 steps in PDAP. Participants made moral inventories and direct amends to those they’d hurt, and they admitted that substances rendered their lives unmanageable. Meehan put his own spin on other steps. His second one was “We have found it necessary to ‘stick with winners’ in order to grow.” To keep old friends around—especially if they used drugs or alcohol, but often even if they were sober—was to court relapse or worse. Once someone had PDAP, they didn’t need anyone else. In the words of one former participant, PDAP was “a whole group of people who were just like me.”

Read the full story at The Atavist

If you or someone you know is struggling with substance abuse, resources are available from the Substance Abuse and Mental Health Services Administration, including a 24/7 national helpline: 1-800-662-HELP (4357). Additional information on rehab abuse is available via Breaking Code Silence.

Mormonism’s Sci-Fi Swan Song

The Book of Mormon on display by young LDS members attempting to persuade members of the audience at The Hill Cumorah Pageant to become believers and followers of the faith, prior to the dress rehearsal of the pageant in Manchester, NY, July 10, 2019. All photos by Heather Ainsworth.)

Andrew Kay | Longreads | July 2021 | 35 minutes (9,917) words)

This story was published in partnership with The Point Magazine.

 

Friday evening 

On a July evening in upstate New York, in a field long ago nicknamed “the Bowl,” a dozen men of divergent builds and ages line up in a row. They are wearing street clothes, and they stare — some at the ground, others at the sky — with the studied demureness of people who know they are being watched. Some 10 yards away a huddle of people acting in an official-seeming capacity size them up with laserlike intentness, shielding their mouths as they mutter impressions to one another. And all around them a hundred hushed onlookers have gathered, sharing whispered speculations about the outcome of something plainly momentous.

This is the culmination of casting day for the 2019 Hill Cumorah Pageant, a production put on by Mormons each summer and likely the largest outdoor theater event in America. It’s a spectacle that from the vantage of 2021 seems doubly alien: first because it is among the most bonkers, if least-known, of all pieces of Americana; second because it is an immense gathering of bodies, so my mental pictures of it, when I conjure them amid the pandemic’s late stages, appear like negatives of a vanished world.

The pageant is best described as cosmic cosplay: a volunteer cast of 770 Mormons from across the continent — electricians and nurses and adjunct professors, selected from an applicant pool of thousands — acts out key scenes from the Book of Mormon, the faith’s foundational text, before an international audience. (In 2019 that audience will total 43,000.) It has been happening since 1937, but in late 2018 the Mormon prophet, Russell Nelson, decreed that it must end; the last show, pageant organizers decided, would happen in 2020. Because of COVID-19, though, the finale will get postponed to 2021, and in time that too will be canceled — meaning this, the 2019 pageant, is the actual finale. That no one knows this now gives the events of this week a strange retrospective poignancy.

Since morning they have cast all 770 souls — all but one, that is — assigning parts both major and minor for a mythic drama that sprints through the panicked flight, from Jerusalem, of a party of fugitives in 600 BC, repulsed by that city’s godless decadence; their journey by ship to the Americas; their multiplying in time, then fissuring into two rival tribes; the appearance, hundreds of years later, of the just-resurrected Jesus before them — here, in the Americas, where Mormons believe Jesus walked and preached; the killing-off of the more virtuous tribe by the wickeder one, but not before the good tribe has buried a history of its doings through the centuries, inscribed on gold plates, for posterity; and finally, the unearthing of those plates 1400 years later by a young Joseph Smith, Mormonism’s founder, at the urging of a being named Moroni, on the very hillside (the Hill Cumorah) where the pageant is performed.

All this they will reenact just six days from now, when the pageant’s directors will elevate this ragtag army to theatrical competence. Then, on opening night, in costumes ranging from 19th century Yankee garb to whatever fugitive Israelites living in the pre-Columbian Americas might have worn, they will dramatize these scenes on a 10-level stage overlooking the Bowl. Striding about, they will trace memorized movements and lip-synch dialogue to a soundtrack from the ‘80s featuring an epic, John Williams-esque score. Many will dance, embodying that double helix of the sacred yet campy that Mormons have mastered. And when the show is over, per tradition, they will go forth to meet the crowd, and the actor playing Joseph Smith, a perennial fan favorite — this year, a cherubic grocery-store consultant with an MBA — will get mobbed as if he were Freddie Mercury or Kesha.

All of that, though, is yet to come. Now they must cast Jesus — or rather, the Jesuses, for though there is only one Jesus in Mormonism, he is played in the pageant by two men. The first role, by far the less prominent, is the Jesus who appears early in the show, in a vision to the prophet Lehi in Jerusalem, foretelling his birth centuries later; he is called “Vision Savior.” The second is the Jesus who, at the pageant’s pinnacle, visits the Americas: “New World Multitude Savior.”

The men in the row mill about now, striking sheepish smiles or mumbling quips. Then they take turns stepping forward and pacing back and forth, waving magnanimously and exclaiming, “Bring me your children!” while the directors assess their resemblance to the Son of God. One is a friendly-faced man with auburn hair and a dad bod, perhaps 42; another, 23 or so, has a thick middle-parted mane and looks like a young Eddie Vedder. Still another, about the same age, looks to be a disciple too of CrossFit — and when it is his turn to stride to and fro he teeters backward in his cross trainers, as if burdened by his own pecs. It is unclear whether Jesus can be jacked, but the answer would appear to be no: he and the Vedder look-alike are politely waved away by the directors.

Evening advances, and the sky turns a providential pink. The directors confer, engaging in an act that they understand, by their own account, in miraculous terms. They cast everyone based on spiritual hunches: as Mormons see it, every human is a kind of telegraph that clicks, at intervals, into clarity and articulacy, alive with vibrations from beyond. (Mormons call these intervals “personal revelation.”) They await this clarity together now — and I have the sense, viewing them and the anxious would-be Jesuses, that I am seeing something I am not supposed to see: that the powers that be in Salt Lake City, who know of my trip to the pageant — who have stipulated that I must be accompanied by an escort at all times and have, I keep imagining, reviewed my criminal record and even my browser history — would not want me witnessing this unchoreographed scene.

At last the pageant’s artistic director, a Brigham Young University theater instructor named Shawnda Moss, hastens alone toward the remaining men, dismissing all but two — one the man with the dad bod, the other a slender kid in his early 20s with blond hair and dark eyebrows. The crowd coos. Moss looks up at both and, on the verge of tears, declares, “I would like to cast the two of you as our saviors.” Then she turns to the younger of the two and says, “I would like to cast you as our New World Multitude Savior”; to the middle-aged man: “I would like you to be our Vision Savior.”

 

Interlude; or, What the Hell Am I Doing Here

 

All that summer I had been sleepwalking. Mornings I woke, and with a glazed-over slowness, a boredom, slouched through my workaday round. Long after work I slouched down streets, familiar streets, which in darkness came to seem projections of my own neural pathways — a circuitry I was sick of. “I feel like I’ve lost the ability to be surprised,” I told a therapist. I tried edibles — chocolates — and when the first did nothing ate a second, then a third, and then all three arrived at once, a stampede that left me rocking back and forth, repentant, ready to moonlight as a D.A.R.E. speaker.

It wasn’t “depression,” exactly; it was spiritual, a staleness that, as an irreligious person, I’d fought with all my life. Except this time was different: I was glimpsing it all around me — in my students especially, college kids to whom I taught writing. The boy with the 142 IQ who went full Brian Wilson and stopped getting out of bed one day. The girl who confessed to me, in chillingly dispassionate tones, that she saw no point in living out the rest of her days. Something was afoot: some gathering despondency, strongest in the young, that had no shortage of worldly causes — planetary, economic — and yet exceeded these. It was a ghostly deficiency. All the Christian faiths in America were hemorrhaging members — and panicking. Fewer than half of millennials now identified as Christian, while Zoomers had just been declared “the Least Religious Generation.” “Nones” outnumbered Catholics and equaled evangelicals.

Meanwhile, a host of weird pseudo-religions like QAnon had sprung up to fill the void, which terrified me. One morning I drove out to the country and, cresting a summit, saw a giant Q mowed into a hillside.

One day I saw a headline that woke me up: the penultimate Hill Cumorah Pageant was approaching. I knew about the pageant because, though I live in Wisconsin, I grew up half an hour from where it takes place. I’d never attended, but knew that once a year a wormhole materialized down the road, something akin to J.K. Rowling’s Platform 9 ¾ that bore you not to Hogwarts but a parallel universe of mature make-believe. The headline kindled my curiosity. I pictured Mormons — a pair of missionaries clacking their way down the street in those white short-sleeved shirts, black pants, and dress shoes, facsimiles of Gallant from Highlights — and it struck me that they were the antithesis of what afflicted me and those I knew. Something in their door-to-door deportment, their earnestness and brio, seemed a soft rebuke to my own disenchantment.

I would go and walk among them, discover what they were plugged into and even absorb something of their radiance. In the process I would return to where I was from — and where, I should explain, I first knew the jolt of something higher.

I would go and walk among them, discover what they were plugged into and even absorb something of their radiance. In the process I would return to where I was from — and where, I should explain, I first knew the jolt of something higher. I’m an older millennial, one of the legions of “nones”; my upbringing was an experiment in godlessness — secular and scientific, shorn of euphemism. My mom was an ex-flower child, my dad an alumnus of the original Woodstock who made kombucha and jogged on our home treadmill in just tighty-whities and blue Pumas. To teach my brothers and me about origins, they read aloud from that candid seventies picture book, Where Did I Come From? In it were illustrations of a plump, ruddy-cheeked couple with thicket-like pubes who, in one image, were in bed together, locked in a coital embrace. “It’s a little like a sneeze,” the caption read, “but much better.”

What happens when you raise a child in a vacuum of religion, untroubled by sin, bereft of any metaphysical framework? I spent Sundays watching MTV and playing outside; I discovered masturbation at around age 8 (privately dubbing orgasm “the super feeling”), then, convinced anything so delightful must be injurious, renounced it. At night I lay awake, brooding on eternity. The worldview of Where Did I Come From, however clear-sighted, reduced human life to biology alone; there were no sequels entitledWhy Am I Here? or Where Am I Going? What dogged me most was the endlessness of death: an electric shock coursed through my body when I tried to grasp the infinitude of it, how all the eons I could think of were, joined together, the briefest prologue to whatever lay beyond the grave. How was everyone I knew just going about their affairs — talking on the phone, dawdling at the mall — when it was obvious they were hurtling toward that blankness? Shouldn’t they be screaming?

At some point, to divert my brain, I took to reading late into the night. The books were science fiction and fantasy — and because I shared a room with my younger brother who fell asleep easily, I read them by the glow of a Nintendo Game Boy accessory called a Light Boy. I sat up reading, at first, Orson Scott Card’s Ender saga, Madeleine L’Engle’s Time Quintet and the requisite Tolkien novels, then weirder stuff: David Lindsay’s A Voyage to Arcturus, Arthur C. Clarke’s Childhood’s End.

The books drilled a hole through my world of Saved by the Bell reruns, and through that hole I could peer at a widened reality where good and evil lay as clearly demarcated as oil from water. Supernaturalism abounded: people died and rose again, often many times over. It was possible to believe that the sensible world was a fraction of what was — that a numinous realm hovered behind it where other life forms dwelled, watching and invisibly swaying us.

I now know that nearly all these writers — and with them heavyweights like Philip K. Dick, Gene Wolfe, and C. S. Lewis, plus recent voices like Stephenie Meyer — were, or are, ardent theists. I think I leapt at them because they were smuggling in religion under the guise of science fiction. Or was there a difference? I see myself sitting up in bed like a miner in darkness, equipped with the Light Boy and holding it, lamp-like, over books that together formed a vein of something — some ore of strangeness, of wonder, that I hadn’t known I’d needed but couldn’t now ignore.

 

Tuesday morning

 

It was a luminous July morning. I was being driven about the grounds in a golf cart by Neil Pitts, the pageant president, a man of 68 with the benignant and fatherly air of an elementary-school principal, who was indeed wearing a white short-sleeved button-down and black pants. We drove past the 10-level stage, an enormous Chichen Itza-like structure with a steel frame and façade of gray fiberglass sheeting, built into the lower half of the Hill. Pitts explained that the pageant began in the ‘30s, when Mormon missionaries living on the Joseph Smith Family Farm, down the road, put on impromptu skits from the Book of Mormon to amuse themselves. In 1937 it became standard and they moved it to the Hill Cumorah.

I see myself sitting up in bed like a miner in darkness, equipped with the Light Boy and holding it, lamp-like, over books that together formed a vein of something — some ore of strangeness, of wonder, that I hadn’t known I’d needed but couldn’t now ignore.

We entered Zion’s Camp, crammed with RVs and tents, deserted just now. We passed one tent with a huge banner-like photo draped across the front; pictured was a family of eight, arms around one another — good-looking, Rockwellian people who sparkled. Then we cut back across the Bowl, and Pitts described the seismic power of the sound system, complete with speakers below the stage that rumbled during the show’s most action-packed sequence — a scene called “Destruction,” when earthquakes and flooding rock the Americas as Christ is crucified. Though I knew this from my reading, I turned to Pitts and, with the artless fascination of a child, said, “So the consequences of the Crucifixion were felt here?” He nodded: “Big-time.”

We passed a pavilion called the Study Shelter, where meals and hymns happened, then skirted the cast area, full of tents where youths hung out when not rehearsing. At last we made our way back to the stage, where some 200 cast members had gathered for morning rehearsal. Pitts dished me off to my next chaperone, associate director Shelby Gist, a straight-talking woman in a streaming floral blouse and jorts. Gist stood at the center of a throng of players, telling them with the exasperation of a JV hoops coach when to depart the stage after a scene: “The exact line is, ‘Then he will pour out his spirit abundantly upon you.’ Then you can move!”

The cast dispersed to their stations about the stage. Many were clad in BYU merch, others in a popular T-shirt that read AIR MORMON, featuring a silhouette spread-eagled in space — but instead of Michael Jordan dunking it was an angel blowing into an apocalyptic trumpet. They ran through a “boat scene” depicting the fugitives’ voyage from Jerusalem to the Americas, in which they reared up a mast nested in the stage while spray geysered up. As the brassy space-opera soundtrack blared, I watched an attempted mutiny as Nephi — the Book of Mormon’s extremely sincere protagonist, its Frodo — got ambushed, only to shriek, “Touch me not!” in tones that would’ve made Elijah Wood blush; and, magically, the mutineers flew backward and collapsed.

I started laughing at this, adult live action role-playing that it was, yet found it captivating: it was the strangest cocktail of old and new, ancient yet American. The pageant was conceived as America’s answer to Oberammergau, a passion play performed in Bavaria since 1634 — it continues to this day — in which local people reenact Jesus’s last days. With this in mind I began to see this spectacle for what it was: the last vestige of a centuries-old tradition of outdoor religious theater, the heir to the medieval morality plays in which an “Everyman” faced some great temptation, undergoing a trial in which his soul hung in the balance — the creaky entertainments of the English countryside that Shakespeare watched as a child.

Yet there was something undeniably contemporary about this play and the religion it celebrated. I found it impossible to forget that this story had been written less than two centuries ago: the whole religion was as recent an invention as the lawn mower. And in its modernity it kept reminding me of that genre in which I’d taken refuge as an insomniac kid. It wasn’t just the soundtrack or the apparitions being staged; it was the terms I heard people casually using, like “spirit prison and “Melchizedek Priesthood.” It was the fact that the Jesus statue at the Salt Lake Temple visitors’ center is backed by a huge mural of the Milky Way — an outer-space Jesus.

A scene during the opening night of Hill Cumorah Pageant in Manchester, NY, July 11, 2019.

So when I learned the pageant’s script had been written by Orson Scott Card, the controversial sci-fi novelist I’d read by the glow of the Light Boy, it rather put me over the edge. Card told me, when I tracked him down: “I’m on the record many times over, calling Mormonism a ‘science-fiction religion.’” He meant Mormon cosmology, an interstellar system graced with a lore to rival Dune, which crystallized in the 1820s — the decade that brought Mary Shelley’s best-known novels — and continued to be built out in the decades that followed, which saw luminaries like Jules Verne and, later, H. G. Wells.

What was the point of this sci-fi faith? All around me were clues: the fact that the cast saw themselves as creators of a celestial city on earth, here in this field. They called that city Zion, an ancient name for Jerusalem that Mormons have revived; they believe themselves charged with forging New Jerusalems now, modern microcosms of the ancient one that take shape wherever people gather, commit to the greater good, and thereby grow godlike. Mormonism is filled with such cobwebby concepts — and rites — dredged up from antiquity and given strange new life in contemporary America: they believe the Garden of Eden is in Jackson County, Missouri. The earliest Mormons performed exorcisms in the age of the first fax machines. And this was key, to faith and pageant both. They depended on a furious effort to resuscitate what was buried in a premodern past — ritual energies, characters, symbols — in the midst of modernity: a landscape of decaying interstates and shuttered malls, where these antique constructs sat as awkwardly as mastodons. Keep going, those around me seemed to say, arms outstretched like so many Gatsbys toward a dream of divinely charted existence. It can persist even here.

Morning bled into afternoon. I followed my next handler, an ebullient Filipino-American woman named Cherlyn, toward the outer edge of the Bowl. There, by the road, I watched a group of teens practice a scene called the Harvest Dance. The soundtrack featured a jaunty Disneyish waltz, which the directors played on a boom box while the teens cavorted. Here I noticed something I would go on observing during youth rehearsals: the directors called out, “This actually happened.”

An outsider might have perceived all this as akin to, I don’t know, the Middle Earth Festival, but to the cast, of course, it was tantamount to a Gettysburg reenactment: not fiction but received truth, a kernel of vision they had internalized and that, acorn-like, ramified into all they said and did. They were meant to emerge from this with the pivotal episodes of the Book of Mormon lodged in their muscle memory. (Surely no attendee at the Middle Earth Festival marvels afterward, “I finally get what Gandalf went through at Moria.”) What did it mean to sacralize a science fiction, ramping up its imaginative plot points to the status of historical fact?

An outsider might have perceived all this as akin to, I don’t know, the Middle Earth Festival, but to the cast, of course, it was tantamount to a Gettysburg reenactment: not fiction but received truth, a kernel of vision they had internalized and that, acorn-like, ramified into all they said and did.

Standing at the roadside, I saw a line of 18-wheelers parked beside the Bowl, their cargo spaces open. They held chairs. A coordinated army of cast members approached the trucks, took hold of the chairs, and carried them to the Bowl, wave after wave, trundling them by the thousands and fixing them in rows on the grass. A small city was taking shape here in a matter of days. It was a huge extrusion in the physical world of one guy’s imagination, of a wild saga inscribed in the brains and bodies of his followers. The kingdom, I saw, was here. Whether the vision that had birthed it was fact or fiction, historical record or fever-brained concoction, hardly seemed to matter.

 

Interlude: The Vision

 

Two hundred years ago, in a wood three miles from this field known as the Sacred Grove, a teenager arrived on an early-morning walk. He was shy and apparently unremarkable — poor, uneducated, the fifth of 11 kids. Joe Smith. He’d grown quieter of late, tormented by his sinfulness and the hypocrisy of those around him.

Across the region people were starved for the supernatural, for more than the standard church service could provide. Unlettered hicks spoke in tongues; farmers saw stuff in cornfields, preached the Second Coming of Christ in the flesh — and soon. The Smiths were steeped in that enthusiasm, practitioners of a backwoods occultism that led them to scour the land for buried treasure. He had a divining rod — a forked hazel branch he carried through the countryside, which he believed pointed toward riches in the earth — and with it a seer stone he held to his eye for the same purpose. Ludicrous and Tom Sawyerish, maybe — but then, the Western world was in a cusp-moment, caught between premodern magical thinking and an Enlightenment rationalism whose conquest was far from complete.

So: a teenager awash in magic, on an early-morning walk. He came to a clearing in the woods, knelt down to pray but couldn’t speak. Suddenly he heard footsteps behind him, shot up, and spun around, only to find no one. He stood there unable to shake the thought that he was being stalked, tracked down “by some actual being from the unseen world.” He would die. Just then, a pillar of light tunneled through the trees and staggered him. You’re forgiven, said a voice. All the churches have grown putrid. Go off and live virtuously.

What happened next is either unutterably enchanting or unsuitable for adult discussion. He went up to bed one night and began to pray, and as he did so his room flared with light and a paranormal being in a white robe hovered before him. He stated his name as Moroni; he had come to tell Smith of a new gospel buried in a hillside nearby — he specified where — inscribed on gold plates and bearing “an account of the former inhabitants of this continent and the source from whence they sprang.” Buried with the plates was a pair of seer stones like those he’d used to hunt after gold, which he would need to translate them. Go and find them, the thing urged him, dig them up, and translate them for the world. Then he vanished and the room grew dark.

That was how it started: as a poor boy’s dream of treasure, transmuted into divine longing. Gold gave way to God. He bided his time — got married — then set out one night with his new wife, Emma Hale, toward the hill. He found the appointed spot and began to dig — and while he toiled the being materialized again, watching over him. Hours later Smith descended the hillside with the plates swaddled in his coat like a live thing. Hale never saw them directly, but rather caressed them under cloth, feeling their metallic hardness, the grooves of their inscription.

The characters on the plates, he said, were written in something called reformed Egyptian. They needed translating. So he retired to a room with an assistant and, placing the covered plates on a table and one of the seer stones in a top hat, gazed into the hat and did something oracular. In the darkness of the hat the seer stone glowed, and above it a parchment materialized, upon which the characters appeared, and below them their English translation. Smith spoke what he saw while the assistant, rapt, transcribed. He unspooled a saga of ancient American tribes from Jerusalem — their feudings, visit from Christ, the better tribe’s extinction. The work was finished by June 1829, hitting the shelves at a local bookstore as the Book of Mormon the following year. It was a feat of magic: Smith pulled a world religion out of a hat.

Whether you find the product unreadable (Mark Twain called it “chloroform in print”) or discover in it a mystical document on par with the Bhagavad Gita is a matter of personal temperament. If you are like me, you are apt to see in Smith an early writer of speculative fiction. It’s not just the supernaturalism of his saga; it’s that it has a strong element of the seriality that typifies the genre: whatever Smith’s plates really consisted of — and no one outside his innermost circle ever saw them — he used them as the basis for a sprawling piece of Bible fanfic. The Book of Mormon is a superfan’s paean to the King James Bible: there’s a reworking of Exodus, but instead of Moses there is Lehi, leading his people not to Canaan but to America. An ark of sorts bears them there. There are ancient submarines worthy of Jules Verne. Above all there are Jesus’s dealings in the Americas post-resurrection — The Further Adventures of Jesus Christ.

There’s a term known to lovers of science fiction — namely, retroactive continuity (“retcon” for short). It describes how writers take an existing series and reinterpret its details to make possible the series’ continuance. At its best, retconning can breathe new life into a stagnant franchise; at its worst it’s a cringey affront to the audience’s memory and intelligence, the author scarcely acknowledging some preposterous contradiction with what came before. Think of Star Wars: in The Return of the Jedi Palpatine dies decisively, hurled down a reactor shaft by Darth Vader. But in The Rise of Skywalker, in a WTF-caliber retcon, he’s simply…back. (“Somehow,” a character remarks airily, “Palpatine returned.”) Mormonism constantly retcons the Bible: in John 10:16 Jesus tells his disciples cryptically, “Other sheep I have, which are not of this fold: them also I must bring.” Does he mean the Israelites in the next county over? No, Smith revealed; he means he has to go materialize amid chocolate, maize, ocelots, preaching before Native Americans. For that matter, Adam and Eve lived in the Greater Kansas City Metropolitan Area.

Transposed to the religious realm, retroactive continuity becomes a gesture of defiance, a refusal to let the series — the Judeo-Christian franchise, nearly two millennia old — come to an end. The U.S. into which Smith was born was undergoing a spiritual stagnation not unlike our own: in the late 18th and early 19th centuries, religious participation was shockingly low. Just 17 percent of Americans in 1776 belonged to a church. In his “Divinity School Address” a few decades later, Ralph Waldo Emerson bemoaned “the universal decay and now almost death of faith in society.” “Half parishes,” he noted, “are signing off.”

How do you thwart a large-scale decay of faith? It is as a response to this question that Smith and Mormonism speak pressingly to us now. Smith’s answer was to insist that revelation was ongoing, that ancient scripture could be opened up and revised — continued — with new visions that drew on the old but retreaded them for a nascent U.S. “Men have come to speak of the revelation as somewhat long ago given and done, as if God were dead,” Emerson complained. So Smith revived it, retconning the Bible into a new myth, a sequel with America at its center: America was the site of Eden, of a Christ visit; in the end, it would be where humanity gathered to await the Second Coming.

“He waged a resistance movement against disenchantment,” Richard Bushman, Smith’s 90-year-old biographer, born into the church, told me. That was the conceptual engine at the heart of this sci-fi faith and the pageant that celebrated it. They were modern re-enchantment projects, huge sweaty efforts to counteract disbelief with the jumper cables of a resuscitated myth. Here, in the middle of contemporary life — on a hill in upstate New York — God was fully, thrillingly alive.

 

Tuesday late-afternoon

 

The cast Wi-Fi password was “ComeUntoChrist.” It was 4:30 now and hot, and I was tired and irritable. There was no coffee to be had on pageant grounds, I was beyond the reach of my 4G LTE service and, worse, weary of the constant supervision. They were so damned nice, the escorts — but their niceness couldn’t conceal the fact that I was being surveilled. It was odd: there’s a thriving subreddit called r/exmormon, where apostate Mormons vent and defiantly proclaim their indulgence in masturbation, Jim Beam, lattés. Had I been after dirt on the church, did Salt Lake City really think I needed to travel halfway across the country to get it?

But there was a Hill Cumorah Wi-Fi network, and it was cool if I used it (I imagined 90 percent of the internet being blocked) — and I was walking now with a handler named Kristin a stone’s throw from a restroom hut. I decided to stage a mini-rebellion: I would go into the hut and camp out, getting my internet fix and some alone time. What if Kristin gave up and left before I came out?

She walked me to the hut and I went inside, entering a stall where I stayed forever — answering texts, checking all the things. At last I washed up, drew a breath and left the hut, glancing about. The coast was clear. I felt an influx of giddiness that was choked off when, some 25 yards away, I spotted Kristin beaming at me and waving. I plodded my way to her like a guilty spaniel, but when I reached her she showed no sign of annoyance. “Hey!” she cried. I half-expected her to add, “How’d it go?!”

She handed me off to my next chaperone, Scott, the middle-aged ex-CEO of a street hockey league. Scott’s kindness was more than skin-deep, a preternatural goodwill that made me briefly forget my annoyance at being monitored. His affect was fully Fred Rogers, his eye contact unswerving as a Mack Truck. What was my background? he inquired. Former academic, I said. Scott gazed mutely into my eyes and thence my soul for some five seconds. “That’s why you’re so thoughtful,” he said at last.

We headed toward the stage. “The Church of Jesus Christ of Latter-Day Saints is the greatest organization in all the world,” Scott said, “because it can pull people together to get great things done like this, in such short periods of time.” He cited the church’s readiness to aid communities stricken by natural disaster: when Hurricane Katrina hit New Orleans, droves of Mormon volunteers rushed to the scene, bringing food and manpower well before the U.S. government had lifted a finger.

He cited the church’s readiness to aid communities stricken by natural disaster: when Hurricane Katrina hit New Orleans, droves of Mormon volunteers rushed to the scene, bringing food and manpower well before the U.S. government had lifted a finger.

When we got to the stage I saw that dress rehearsals were underway. Here I had my first glimpse of the costumed ancient Americans. The latter, I should pause to explain, are the reason the pageant and the Book of Mormon can make for distressing experiences. The book posits that two tribes, the Nephites and Lamanites, lived in the pre-Columbian Americas, and that the Lamanites, having killed off the Nephites, became the peoples now known as Native Americans. What makes this origin story especially painful is its timing: the Book of Mormon was published in March 1830, two months before President Jackson signed the Indian Removal Act, which authorized the U.S. government to force Native peoples off their ancestral lands and relocate them west of the Mississippi. And it was marketed as a history of the Native Americans, who came, it revealed, from Jerusalem. While Indigenous people were being shunted westward in death marches like the Trail of Tears, their history was being quietly overlaid by the visions of a white kid from upstate New York. It was its own Indian Removal.

I should clarify that however gruesome these origins, the LDS church is now a multiethnic phenomenon with more members outside the U.S. than in it — and plenty of these members balance clear-eyed critique with a regard for what they find redemptive in the faith: often, its contention that revelation is continuous and anyone can have it. Still, this much is clear: Mormonism is a modern re-enchantment project that took shape on a continent populated, to begin with, by people who never saw themselves as bereft of wonder. “We as Indigenous people never were kicked out of our Garden of Eden,” Elise Boxer, both a practicing Mormon and an enrolled citizen of the Fort Peck Assiniboine and Sioux Tribes, told me. “That’s where we live.”

Gazing at the stage now, I saw that on either side, two groups of about 20 teens — white as Wonder Bread, clad in skirts rather like Navajo quilts — practiced a battle dance while the soundtrack blared. They brandished spears. One group played the Nephites, the other the Lamanites; it was a call-and-response. At its close the two groups chanted, “Hah!”

A couple take a selfie in the golden, end of day light, just prior to the start of the Hill Cumorah Pageant in Manchester, NY, July 10, 2019.

Closer at hand I saw other players decked out as ancient Americans. Some wore headdresses containing feathers, plus beaded necklaces and shirts decorated with pelts; another wore a kilt studded with turquoise. Still others were clad in a different sort of outfit that looked not Native but vaguely biblical: gem-filled headdresses, purple and emerald robes that undulated in the breeze. These were the fugitives who flee Jerusalem toward the start of the pageant. At one point I saw the (partially costumed) man playing Joseph Smith stroll by in a khaki nineteenth-century tailcoat and wig, plus cargo shorts; he paused to share a joke with a Nephite man in a feathered headdress and kilt. Watching them chortle together I wondered if I might be on whippits.

The redface, though. It was in such cartoonishly bad taste, it was hard to balance with the extreme kindliness, the charity, that the cast radiated. (Later I asked one of the escorts, “Is it okay for a nearly all-white cast to dress up as Native Americans?” She replied, “Please don’t ruin anyone’s day by asking them that.”) I thought of the Boston Tea Party, whose dissidents dressed up as Mohawk Indians. Writing now, I think of the storming of the Capitol — of the Q Shaman, whose aesthetic was less Viking than Native. Why, in precisely those moments when they wanted to trumpet their identity to the world, did Americans play Indian dress-up?

The redface, though. It was in such cartoonishly bad taste, it was hard to balance with the extreme kindliness, the charity, that the cast radiated. (Later I asked one of the escorts, “Is it okay for a nearly all-white cast to dress up as Native Americans?” She replied, “Please don’t ruin anyone’s day by asking them that.”)

Scott turned to me: “How would you like to be in a scene?” Over his shoulder I saw two teens in Native gear, at ease during a lull in rehearsal, doing the “Raise the Roof” dance. “We’re going to do a run-through of the New World Multitude scene. You can be a Nephite.” Processing this, I felt my visage crumple into a constipated expression. This was the climax of the pageant, when the risen Christ appears among the Natives. For an instant I pictured myself — tired, angry, emanating B.O. — unwillingly donning a headdress, then being embraced and kissed by Jesus. That image, in turn, being uploaded to the pageant’s Instagram, then picked up by the Salt Lake Tribune and going low-key viral. My alarmed friends blowing up my phone: “Yo, call me as soon as you get this.”

But it was to be a street-clothes rehearsal (aside from Jesus), which seemed less risky. Soon cast members, hundreds, began congregating at the foot of the stage. They arrived in waves. It was early evening and the atmosphere had grown expectant, alive with the ambient power that can only come from a concentration of bodies outside. And, of course, Jesus was coming.

Together we trekked up the hill, taking our places at stations on either side of the stage. I was a knot of anxiety: Was this okay? The Nephites were a made-up people; wasn’t it impossible to appropriate a culture that hadn’t existed? But then I recalled the faux-Native getup I’d just seen, the chants. I couldn’t possibly go through with it. Also, wasn’t I partaking in a sacred myth I didn’t believe in — and didn’t that mean I was appropriating Mormon culture? I felt mired in layers of wrongdoing; I was losing my shit.

Suddenly they flipped on the soundtrack and the scene started. All around me cast members were looking toward the top of the stage as if entranced, and I followed their gaze and stopped cold. It was him: it was Jesus Christ. Shoulder-length auburn wig with middle part. Synthetic beard. White robe, brown sandals. He looked like the Jesus from the gaudy religious pictures I’d seen in older relatives’ homes — except he was standing atop Chichen Itza.

He had a beam of light trained on him, and stood motionless with arms outspread and palms turned upward, a radiant wisp against the New York sky. He could have been a superhero. “I am the light and the life of the world,” he lip-synched. Joyous choral music ensued; the voice of God sounded through the speakers: “Behold my beloved son, in whom I am well-pleased.” As the carol continued, the hundreds of cast members filtered onto the stage, a massed and carefully patterned congregation. Scott, beside me, nodded: it was our turn.

We found our places and stood still. Jesus, still at the top of the edifice, dropped his hands. There was a central staircase leading down the stage, and he began to descend it, the beam of light staying with him. “Arise, and come forth unto me,” he mouthed. I scarcely recognized him from the casting ceremony. His name was Austin Reid, and he had gone from an early 20-something who ran an online outdoor-gear company to a sort of ghost, lordly and wraithlike and totally self-assured. “Thrust your hand into my side,” he pronounced — and a lone player walked up the steps and did just that. “Now you know that I am the God of Israel,” he said. “The God of the whole earth.”

Players rushed to greet him, in keeping with the script, but it seemed they were hardly acting — just viewing him as the thing he represented, genuinely magnetized. Some he touched, healingly; others he embraced. The chorus swelled to a refrain of “Hallelujah.” Near me a young mom held a toddler who cried, “We have to go! Take me to Jesus!”

I looked out across the landscape to the road below, where an SUV drove by, and imagined the driver sipping a coffee and glancing up at us innocently and then spraying the coffee. The road was Route 21, which I’d lived off of growing up. Then I glanced back at Jesus, encircled by players who, by tomorrow, would be dressed in the Native costumes I’d seen earlier. I felt full-force the scene’s terrible ambiguity. You could have called it, rightly, a disturbing symbolic drama in which a white Jesus literally descended to dispense wisdom and salvation to Indigenous people. In that sense it was the epitome of a colonial mindset that had produced the Indian Removal Act.

At the same time, it was a stunning piece of outdoor religious theater: ordinary people were acting out ultimate things amid gnats, birds, trees — and doing so despite a wider culture that had mostly abandoned outdoor theater and, increasingly, ultimate things. They were ushering in a new reality: the scene’s title meant not just the premodern Americas but life now, made annually novel, alive with ghostly energy, by this hillside ritual. It was a defibrillator to the heart of an old and disenchanted world.

 

Wednesday pre-dawn

 

I woke at 5:00 a.m. the next morning in my Airbnb, a rural guesthouse, peeled back the sheets and found a large white spider beside me. I barked, shot out of bed and, unthinkingly, dressed and set out driving.

It was still dark. It is strange to drive the roads of the region where one is from when one’s family is gone from there; stranger still if the region is western New York. If you are from this place, you can understand how a religion started here. There’s a feral rawness to its woods, and the roads that lead through them are lonely and trance-inducing. The fields are limitless: you ramble through them, and when you get to the end, seemingly, there is only more field, as in a dream or a prefiguration of eternity.

A woman recalls her story of deciding to join the LDS faith (being saved) during ‘Devotional’ at the days end, but just prior to the dress rehearsal performance of The Hill Cumorah Pageant in Manchester, NY, July 10, 2019.

I was thinking about Joe Smith. On a morning like this he’d had his first vision. What got me, though, was what came after: how he spent his life expanding this Bible fanfic into a cosmology that millions lived in. The way he disclosed that cosmology — it reminded me of nothing so much as the pulp science-fiction magazines that, a century later, marked that genre’s golden age: Amazing Stories. Other Worlds. (Scientology, itself a sci-fi faith, began in one of these.) Smith revealed his cosmos one mind-blowing installment at a time. His visions were serialized in a sense, separated by months sometimes; converts awaited each with the bated breath of cult fandoms biding their time till a new issue, volume or episode drops. Only the stakes were everything: their destinies, the nature of the universe, and of their souls.

Here is what he revealed: God was an embodied extraterrestrial who lived near a distant star called Kolob — and if by some marvel we could see him, “if the veil were rent today,” we would find ourselves eerily mirrored. It was the 1840s and telescopes had grown more sophisticated. People peered through them expecting to see God, and when they didn’t, they merely concluded he lay beyond the reach even of these new instruments. Smith’s story was of its time in that sense, but added a crucial wrinkle: God had been one of us but upgraded himself into a superior being. The purpose of our own lives was to replicate his ascent, becoming ourselves gods who would populate our own planets after death, parents of new creation. “God himself was once as we are now, and is an exalted man, and sits enthroned in yonder heavens!” Smith thundered to his followers just before his death. “That is the great secret.”

Smith’s was an extremely American drama — bootstraps individualism given mythic form by a man who’d spent his youth in poverty, hunting treasure. How could you get more upwardly mobile than to become a god? There was a catch, though: no one could attain godhood singly; we got there as units — by marrying and having children — which sounds like a championing of the nuclear family, and is, to an extent. Beneath this, though, lay something more poignant: an insistence that we need each other, that we’re interlocked by spokes of dependency, our souls’ progress conjoined. The Mormon heaven is social: in death we find ourselves surrounded, in thriving celestial hubs, by the people we loved in life. To the extent we perfect our bonds with them here, now, we are already there.

I went on driving, watching woods give way to drumlins, remote roads to residential ones. I made my way by instinct down one such road, scudding by silos and houses just lighting up, and veering at last onto a steep street I climbed and then pulled over. I looked at the silhouette of the house I’d grown up in, warm now with other lives. I’d not seen it in 15 years. In the stillness I heard our voices as they’d sounded when we were gathered in this place: children’s screaming laughter, my dad belting out Grateful Dead songs, my mom in her bathrobe laughingly chiding him. It occurred to me that in the Mormon heaven I would never lose these people. I saw my bedroom and me in it at night, already dogged by the insomnia that would rack me as an adult and driven, for distraction, to books. The reading was a kind of prayer, as all fiction-reading is. Hands close together, I lay summoning what was invisible, miraculous: aliens, unfathomed planets, unseen forces that governed all we did.

The memory of these stories blended in my head now with Mormon myth, and I had the sense that they had sprung from the same impulse. Mormonism and science fiction were modern inventions that responded to a new reality, one increasingly dominated by scientific thinking and the technology it bred. People found themselves in a Copernican universe far vaster and more impersonal than the biblical heavens, and one way to react to this new normal was to discover in space itself — its stars and planets and imagined denizens — the stuff of religious awe. So in science fiction, the wonder and terror long inspired by the Judeo-Christian God, and by angels and devils, gets remapped onto aliens; visitations become visitors. In Mormonism, God is an alien; we are all incipient aliens, bound up in a project of collective deification.

In the stillness I heard our voices as they’d sounded when we were gathered in this place: children’s screaming laughter, my dad belting out Grateful Dead songs, my mom in her bathrobe laughingly chiding him. It occurred to me that in the Mormon heaven I would never lose these people.

Why did it matter, this drive to enchant? I thought again of that spiritual desiccation I had glimpsed in myself and my students. And of what I’d seen on the ground that week: people supercharged by a modern myth that insisted on the sociality of salvation, a retconning finally of redemption itself, which held that we are delivered as collectives or not at all. It was a mythos for the era of disasters. It lay behind the Mormon response to Katrina, and lately COVID-19, which saw bishop’s storehouses, positioned around the globe, bring nearly one hundred million pounds of food to beleaguered populations in 2020.

Was the culture I belonged to — a culture of unbelief that wanted, nonetheless, to confront the catastrophes ahead, which threatened to tilt reality toward science fiction — capable of such feats of social strength? My time here had made me skeptical. Because belief was the crux of it, the impetus behind the directors’ calling out to the young cast: this actually happened. That was what elevated their story from sci-fi to scripture, from Dune to an architecture of revealed truths in whose image they remade the world. What did I or my friends — secular, overeducated, climate-terrified yet basically inert — have to rival that?

In order for people to abandon their self-interest and commit to a grand cause, writes Jane Bennett in The Enchantment of Modern Life, something has to happen to their aesthetic being — that part of them that is sensory and emotional. They have to fall in love. “One must be enamored with existence,” she writes, “to be capable of donating some of one’s scarce mortal resources to the service of others.” Put baldly, “You have to love life before you can care about anything.” Enchantment turns out to be the precondition for committed political life together — a way of charming people toward self-transcendence with a vision of existence that pulses with animacy and purpose. Ethical codes are stillborn without such visions; they can’t catch unless people are inflamed by some story of their lives capable of drawing from them, again and again, virtuous performances.

 

Thursday

 

Opening day. Morning.

Across the grounds people bustled. Some drove golf carts. On the Bowl, cast members did last-minute run-throughs while directors, clutching at walkie-talkies, fine-tuned and fretted. The air crackled with promise.

I had arrived late. There had been a dry run of the New World Multitude scene and I had played hooky, having decided against the part. Now I strode with Scott through the cast area, where a mood of serenity had set in. People were finding each other. They sat in clusters outside the tents, playing guitars and singing, touching each other reassuringly and laughing. I had never witnessed a pilgrimage. I saw people divorced from their workaday lives who — bathless, deviceless — had been deprived into clarity.

“Everything else is stripped away,” said a girl named Emily.

“It’s a very similar feeling, I would imagine, to when people converge on disasters, and they’ll sacrifice of their own to give to some cause,” added another kid, Jonathan. “Everyone’s made some sacrifice to be here. And love is at the center of that.”

I went on walking, surveying all I saw with the attention one bestows on something about to vanish. No one knew, of course, that this was the last pageant — that the pandemic would obliterate the planned finale — but there was something valedictory about it all. The show needed revision — the redface had to go — yet it seemed a pity that this huge, weird piece of Americana, which had survived into the age of TikTok, was ending because a 94-year-old man in Salt Lake City had demanded it should. The church’s official line was that it wanted people focusing on their home lives — scripture-reading, prayer — not theater. This sounded like a cover for wanting to save money, issued by an institution that as of 2020 had $100 billion in assets.

Morning blurred into afternoon, afternoon into evening. Somehow, the premiere was close at hand; the cast left to change.

For once unchaperoned, I followed a party of players toward a costume house at the hill’s southwest end. Here, as players disappeared behind curtains, I took in a scene that included an entire wall stocked with boxes containing beards, each labeled. There was NEW WORLD MULTITUDE SAVIOR and, beside it, UNBELIEVER #1. “They’re all made of human hair,” said a voice beside me. It belonged to a spectacled seamstress named Jackie. “A beard can take a year to make.” There were hundreds. She plucked a box off the wall — VISION SAVIOR, the lesser Jesus — and opened it. “Church members donate their hair for these,” she murmured, dangling a reddish pelt before my face. I gaped at what was at once the beard of God’s son and the Norelco trimmings of some ginger guy in Utah, then turned away.

All emerged from the costume house dressed and I followed, watching as they rambled down the hill. There they were joined by the clad players from the other houses, several streams of people made suddenly mythic, who came together in one teeming body aimed, I saw, for the devotional pavilion. Beyond them I glimpsed the Bowl, swarming now with spectators — thousands—staking out chairs. With a giddy solemnity the cast crowded into the pavilion, ranging in rows — characters from a Mesoamerican past brushing shoulders with those from Jacksonian America. A director led them in a last prayer, after which they sang a hymn called “God Speed the Right,” then marched out to meet the crowd.

I walked with them. The premiere was slated for 9:00 p.m., and it was 7:30; this time had been allotted for the players to mingle with the audience. I watched the graying cherub playing Joseph Smith — Willy Wonka-ish in top hat, tailcoat, and breeches — get swiftly engulfed by stans seeking selfies. Vision Savior, who worked in Big Oil and lived year-round in Saudi Arabia, flashed me a beatific smile, then turned to greet a family of eight.

I surveyed the acreage of people before me and, in the gathering darkness, ventured in. It was the most international of crowds. I met a family that had flown in from Honduras that day, and when the show was over would return by red-eye flight. I met a party of women from the Sichuan province of China who’d been born into Buddhism but converted as adults to Mormonism, enticed by the emphasis on family.

At this point I became aware that the weary cynicism that had steered me to this place was being dislodged by something else. A doubt about my doubt? The energy, the immense shared electricity coursing through this outdoor cathedral, unmoored me. A man in the missionary getup — mid-50s, indefatigable as a jackrabbit — pulled me aside, training laserlike gray eyes on mine. “I teach economics and finance at Columbia. These are not individuals lacking in intelligence,” he said, gesturing across the crowd. “They’re brilliant.” He had fused his spiritual and logical intelligence, he needed me to know, into “an incredible technicolor understanding.”

Whatever unsteadiness I was feeling, it seemed a consequence of being inundated by thousands of worshippers. I suppose I would’ve felt the same approaching the Kaaba at Hajj. I met two women from Massachusetts who spoke to me of the afterlife with such passionate certitude, such detail, they could’ve been returning tourists. “The amazing love that exists on the other side of the veil is outstanding,” one said. They spoke of becoming kings and queens in death — of deification — and with gentle firmness stressed how I needed to pray to receive personal revelation. When I asked how — was there a wikiHow? — they laughed: “Just talk to God. Just ask Him.” (Earlier, in private, the pageant president had told me the same, more forcefully: “You have to kneel down and ask!”)

At this point I became aware that the weary cynicism that had steered me to this place was being dislodged by something else. A doubt about my doubt?

All at once the cast vanished, full night came on and the show started. I found a seat. In the dark, a cluster of robed women appeared atop the stage, flourishing apocalyptic trumpets they pretended to play while an epic fanfare sounded through the speakers. The cast marched onstage, an army, some bearing flags — and as they assumed their places in an opening tableau there were whoops and whistles in the crowd.

All went semi-dark. A group of players danced and jumped while the narrator, an omniscient father-figure who sounded like Charlton Heston, set the scene: Jerusalem, 600 BC. Depravity reigns. Lehi, the Mormon Moses, and his son Nephi have visions foretelling Jerusalem’s destruction and Jesus’s coming. They need to flee. The visions took the form of “water curtains,” big cumulus mists plumed up from understage, through which apparitions shone: a manger, a tree, a middle-aged angel high above the stage who for years dangled from a cable but in 2019 stood on a hidden platform. The production quality lay between full-on professional and DIY.

It started raining; babies cried. Someone farted. I watched the fugitives cross the Atlantic in that wooden boat, limousines-long; their arrival in the Americas and campy harvest dance; the fracturing of the party into rival tribes.

The show’s climactic sequence kicked into motion. “Far away, on a hill outside Jerusalem, three crosses rose,” the narrator announced. At the upper-right corner of the stage a trio of crucifixes swung into view, thronged by flames, then vanished. A stage-wide inferno followed — the cataclysm that killing Jesus triggered here. I watched as firebombs burst, geysers shot up, and waterfalls plummeted; I saw the silhouettes of a few hundred cast running about screaming while, below us, the earth convulsed with subterranean sound.

Total darkness and silence ensued. Then the risen Jesus appeared, this little refulgent being clad in white and perched at the pinnacle of the stage. It had always borne the seeds of sci-fi, the Christian story — an otherworldly emissary, the logos incarnate, sent here on an errand to save us — and here Jesus looked like nothing so much as a lone visitor. His person was mediated by streaks of rain. It was so quiet across the Bowl, a deep and babyless silence. Lights slowly came on, and I watched the scene I’d acted in two days before: Jesus descending the staircase, the cast filtering onto the stage, all surrounding and venerating him. Around me, people started crying.

The scene ended and they told of the two tribes going to war afterward, of the Nephites’ dying off — but not before one of them, Moroni, had buried their history in this hill. It’s hard to convey the all-out weirdness of the next, final episode. “Centuries later, in the spring of 1820,” the narrator declared, “the Lord heard the earnest prayer of a young man named Joseph Smith.” There was Smith excavating the hillside while Moroni supervised; there he was sharing the good news with a bunch of New Yorkers in bonnets, corsets, suit jackets. It was impossible to ignore how meta — how postmodern, really — it was: the abrupt fast-forwarding 14 centuries, the found text which is the very text you’re watching, the author inserting himself into the story. It was at once deeply moving and reminiscent of a senior thesis by a screenwriting major.

The show concluded and the Bowl resounded with cheering. Anxious to beat the crush, I got up and hastened away. Rain fell more heavily. When I reached the roadside I turned and took in the scene a last time: the multitudes gathered on the grass like groundlings, as they’d gathered here nearly a century; the cast advancing to meet them; the whole thing an international city, the shadow-image of the ones they hoped to form in death. And the driven rain deluging it, in effect, out of existence.

The character of Jesus Christ rises above horn players at the end of the The Hill Cumorah Pageant in Manchester, NY, July 10, 2019.

I found my car and drove off, making my way back to the guesthouse, where I peeled off my wet clothes and stood a moment savoring the silence. Then, warily, I approached the bed. What I wanted to do I had never once tried, despite being almost 37 — and couldn’t at first. What brought intelligent people, brilliant people, to kneel?

Nevertheless, I lowered myself, placing my knees on the tile and feeling the soreness in my nearly middle-aged body, no longer that of the boy who’d arrived to bed each night seeking communion with the spirit world. To whom or what was I even kneeling? Jesus Christ? The phrase embarrassed me. The embodied God who’d preceded us in space?

A line from Wallace Stevens came to me: “The final belief is to believe in a fiction, which you know to be a fiction, there being nothing else. The exquisite truth is to know that it is a fiction and that you believe in it willingly.” I couldn’t decide whether this was sublime or Orwellian. Still, I brought my hands together and asked — to be more inspired, surprised, tuned to a godly frequency that as yet I hardly heard — and felt something unfamiliar: a peace that was either grace itself or the relief of giving up control. This I let linger, studying it, till it got really late — till the imprint of the day, of the whole mad pilgrimage, began to weaken, eroded by the sound of rain hitting the guesthouse, great percussive drops that drew me by degrees to sleep.

***

Andrew Kay is a writer, editor, and teacher who lives in Madison, Wisconsin.

***

Editors: Ben Huberman and Jon Baskin (The Point Magazine)
Fact Checker: Julia Aizuss (The Point Magazine)

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

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

Longreads Best of 2020: Investigative Reporting

All Best of Longreads illustrations by Kjell Reigstad.

All through December, we’re featuring Longreads’ Best of 2020. This year, our team picked and featured hundreds of in-depth investigations published across the web. Here are our top picks.

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

* * *

The Last Patrol (Nathaniel Penn, The California Sunday Magazine)

In July 2012, U.S. Army First Lieutenant Clint Lorance gave an order that killed two Afghan civilians on a motorcycle near an operating base outside of Kandahar, in a volatile region in Afghanistan. Lorance was convicted of murder. The narrative weaved by Sean Hannity and others at Fox News framed Lorance as a war hero; he was pardoned by Donald Trump in November 2019 and served six years of a 20-year sentence. The former Army officer, who had been advised to take interviews only from conservative media outlets, agreed to talk with Nathaniel Penn, and the result is an incredibly riveting and comprehensive piece on his case.

Arriving on the dirt road that led into the village, the patrol discovered two of the three Afghan men lying beside a ditch. They were dead. Their companion had run away. Near them, the motorcycle leaned on its kickstand.

It wasn’t at all the scene Lorance had imagined. “If I would have been up there,” he told me, “and would have known that they were stopped and off their motorcycle, I would never in a million years have said, ‘Fire at them.’ I would want to go talk to them and get intel out of them. I’d be like, ‘Who are you? Where are you from?’ I would want to know everything about them.”

A woman and two children stood near the bodies, weeping.

Holy shit, Lorance thought. Did we just kill good people?

The way to find out was to do a Battle Damage Assessment. Skelton was the intelligence specialist who carried the SEEK. But Lorance wanted Skelton to follow him into the village to carry out the mission and get the biometric enrollments. The engagement with the motorcycle had been necessary and unfortunate, but it wasn’t important. He ordered two of his men to conduct the Battle Damage Assessment while he proceeded into the village. They had the necessary training, even if they didn’t have the SEEK. They knelt by the bodies.

Captain Swanson, who had been alerted to the situation, was radioing Lorance from headquarters. What was happening? he asked. Were the dead men combatants or civilians? Had Lorance done the Battle Damage Assessment?

No, Lieutenant Lorance replied, they hadn’t been able to do the Battle Damage Assessment. The villagers had taken away the bodies.

As he spoke, he knew he had just made a critical mistake. He should have said that his men would get to the Battle Damage Assessment eventually, that they didn’t have time to do that shit right now. Because when you speak over the radio, “you might as well be putting your hand on the Bible,” as one member of the platoon told me.

In the years to come, Lorance’s decision not to use the SEEK device for the Battle Damage Assessment would prove to be crucial and polarizing. It would contribute both to his imprisonment and his pardon.

The weeping woman was screaming now. Lorance told himself that her tears didn’t necessarily mean he’d done anything wrong. The men whose bodies she was crying over could be insurgents. That shocked him — the idea that the Taliban had families, too. It had never occurred to him before.

Read more…

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. 

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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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Longreads Best of 2020: All of Our No. 1 Story Picks

All Best of Longreads illustrations by Kjell Reigstad.

All through December, we’ll be featuring Longreads’ Best of 2020. Here’s a list of every story that was chosen as No. 1 in our weekly Top 5 email.

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

The Secret Group Trying to Topple North Korea’s Regime

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When writer Suki Kim heard on the news that there had been a break-in at North Korea’s embassy in Madrid, led by a young man named Adrian Hong, she “sat upright.” She had known Adrian for several years. They had crossed paths at a Korean Students Conference in 2003, after which Kim went on to write the book Without You, There Is No Us, about her time as an English teacher in Pyongyang, and Adrian became an activist who spread awareness about human rights abuses in the Hermit Kingdom. Now he was being hunted by two governments. When Kim texted Adrian, he agreed to meet with her at a barbecue restaurant in Times Square. He told her that, yes, he’d led the break-in, but for good cause: He was now a leader of Free Joseon, a secretive international network of activists seeking regime change in Pyongyang:

“Regimes like this don’t collapse slowly. It happens instantly. Every revolution is that way, and this will be the same,” Adrian told me. “I don’t mean a revolution in a figurative sense. I don’t mean the revolution of the mind. Or some kind of fantasy where five hundred thousand people protest in Pyongyang and the regime just packs their bags and leaves and some transitional government comes in place. This is not like any other country, where offering them enough money will mean they will liberalize—any opening or reform will result in their insecurity. The only way to make them change is to force them to change.”

Adrian had no formal protection for his actions, not even from the U.S. government: If he was apprehended in New York for what happened in Madrid, he could be extradited and face up to 28 years in prison. In her New Yorker feature “Follow the Leader,” Kim recounts how Adrian went from working at NGOs to risking his life in the name of freedom alongside likeminded activists. One of them is Chris Ahn, who Kim called on to help with a high-profile defection. Ahn was traveling at the time:

“Holy shit, it’s perfect,” Adrian said, when Chris told him that he was in Manila. “You know what’s happened with Kim Jong Nam, right?” Chris did. The day before Adrian’s call, the eldest son of Kim Jong Il had been assassinated at the Kuala Lumpur airport, by two women who smeared a nerve agent on his face. The killing was assumed to have been ordered by Kim Jong Un, his half brother, in the interest of eliminating a potential rival. Adrian told Chris that he had just received a call from Kim Han Sol, who is believed to be Kim Jong Nam’s eldest son. According to Adrian, they were introduced in Paris, around 2013, by a mutual contact. Han Sol, who was wearing a pair of Gucci shoes, told Adrian that he was aware of his work with North Korea. The two men kept in touch. Adrian told me, “Never met a kid with so much money. Kim Jong Nam had stashed away a lot of cash during his life.” Immediately after his father’s death, Han Sol noticed that the Macau police who typically guarded his house had disappeared. He called the mutual contact to tell Adrian that he, along with his mother and his sister, needed to get out of Macau as soon as possible. It was easy to see why Han Sol would be of interest to various countries and their intelligence services. Considered by some to be the rightful heir of the former Great Leader, Han Sol represented valuable leverage to whoever captured him, dead or alive—Adrian called this a “zero-sum game.”

Adrian, who was in the U.S., asked Chris, “Can you go meet them at the airport in Taiwan tonight, and make sure that no one is following them?” Chris threw some clothes in his backpack and headed to the airport. It was after midnight when he arrived in Taipei. He had Han Sol’s flight number, and he found a small noodle stand by the gate, where Han Sol and his family could sit while he scanned the crowd for threats.

The family arrived early that morning, wearing sanitary masks to cover their faces, which wasn’t unusual in Asia even then. Han Sol was about five feet ten inches tall, wearing a long-sleeved shirt and a coat, and rolling a suitcase. His mother was a pretty middle-aged woman, who reminded Chris of his own mother. Han Sol’s sister, who was wearing jeans, looked to be in her late teens. Adrian had told the family that Chris would be wearing a black T-shirt and a Dodgers cap and would answer to the name Steve. Han Sol spotted Chris and said, “Steve?” Chris nodded and said, “Let’s go.”

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