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Deconstructing Disney: Queer Coding and Masculinity in Pocahontas

Illustration by Carolyn Wells

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

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

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

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

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

***

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

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

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

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

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

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

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

***

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

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

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

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


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

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

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

***

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

***

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

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

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

* * *

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

Editor: Carolyn Wells

When Refugee Families are Separated, Women Carry the Burden

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

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

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

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

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

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

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

* * *

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

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

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

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

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


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

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

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

* * *

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

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

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

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

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

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

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

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

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

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

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

* * *

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

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

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

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

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

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

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

The Silent Farm for Developmental Disabilities

Photo by Jesús Hellín/ Europa Press via Getty Images

This gentle essay by Mark Mann for Beside takes us into the understated world of David and Peter, who share a friendship spanning four decades, yet no words. Peter’s form of down syndrome means he is non-verbal, so ever since David first became his support worker they have been finding other ways to communicate — beginning with artmaking, to gardening, and ultimately, to farming. When David bought a 25-acre farm in 1998 he realized it was a place where he could “break the limitations imposed on people with developmental disabilities.” Abhorring the condescension he sometimes saw Peter face, on the farm David lets Peter take the lead in the quiet routines of  “preparing and sharing meals, tending to a few animals, and passing the time.”

This essay radiates with the peace that David has created for Peter in their silent sanctuary. It may not be a productive farm, but “rather than crops or yields, David and Peter’s harvest is each little detail noticed and celebrated: a trusting moment that passes between Peter and one of the horses, or the bright red sumac buds that David hangs above the kitchen table.”

Inspired by what David and Peter were doing at the Farm, others began joining them. David and Peter were connected to a larger network of families with members who were on the autism spectrum and used no spoken language, and some of these men became regulars. Neighbours started dropping in regularly, and friends and acquaintances from around Ontario began making the trip, to lend a hand and savour the atmosphere. (I was one of those, for several years.) The numbers have ebbed and flowed, but a small community has always coalesced around the Farm: loose, evolving, and delightfully unlikely. Today, it’s mainly just Peter and his close friend Kevin. Kevin doesn’t use spoken language either, but he, Peter, and David have found a rich and subtle terrain of conversation that goes beyond words: gestures, body language, touch, and eye contact.

… if everyone is feeling well, they make a trip to the barn. The 300-foot journey is as slow and deliberate as a religious procession, especially across the winter snow and ice. Once arrived, the atmosphere inside the barn is precisely like a cathedral, with its sombre light and air of stillness. One feels an instinct to whisper, and, like Peter and Kevin, to take careful, quiet steps.

The first order of business is to feed and water the sheep. On this particular day, we discover that one of the ewes has given birth. The little newborn is already skittering around on four legs while keeping close to its mother. Seeing the lamb, the quietness among the men intensifies. For several long minutes, they hover in the corner, taking in the scene. Kevin reaches out and removes some straw from Peter’s hat.

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Forget the Sheep, Pass the Dog

Photo by Cuveland/ullstein bild via Getty Images

Dogs have long had a place by people’s side, and hundreds of years ago in southern British Columbia, small-sized domestic dogs were particularly abundant — although for a rather surprising reason: their fur.  Elders from the Nuu-chah-nulth communities on Vancouver Island’s west coast and Coast Salish elders on the island’s east coast and the mainland have an oral history detailing these dogs — which were small, white, fluffy, and loved. Women weavers would care for the dogs, who lived isolated on small islands to prevent interbreeding with hunting dogs. They were fed a special diet and a couple of times a year were sheered like sheep for their wool coats, out of which the women made blankets.

As Virginia Morell explains for Hakai Magazine, the arrival of the Hudson Bay company, and with it a supply of cheap blankets, gradually destroyed the need for the wool dogs, which merged with other domestic dogs and disappeared. Proving their existence has been a challenge for archaeologists. However, over the years new avenues of research have shown the importance of these dogs — with a particular breakthrough being made in 2002, when historian Candace Wellman in Bellingham, Washington opened a drawer and found a woollen pelt. The owner? A fluffy white dog from 1859 called Mutton.

Sometime before 1858, Mutton, a wooly dog, had found himself a new keeper, George Gibbs, a 19th-century ethnographer with the Pacific Railroad Survey and the Northwest Boundary Survey. Gibbs studied the customs and languages of peoples in the Pacific Northwest, and in his notes on the Nisqually language, he recorded the name of the dog wool blankets as Ko-matl’-ked. Mutton likely came from a Coast Salish village in British Columbia. Gibbs named the dog for his love of chasing sheep.

Not too much is known about Mutton in life, though apparently goats also attracted him. In 1859, Mutton ate the head off a mountain goat skin that was in Gibbs’s care, bringing a colleague to near tears. Naturalist C. B. R. Kennerly had meant to send the skin as a specimen to the Smithsonian Institution in Washington, DC. “[Gibbs] sent it to me yesterday & when I opened the bag & saw the injury I could almost have cried,” Kennerly wrote in a letter. And more ominously, he added, “Mutton was sheared a short time ago, & as soon as his hair grows out we will make a specimen of him.” Which they did, at some point. In death, Mutton has shared the very essence of himself—his pelt—likely the only known wool dog hide to exist.

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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

All that Glitters

An illegal mining site in Madre de Dios, Peru / Ernesto Benavides for The Atavist

This is an excerpt from The Atavist‘s 10th anniversary story, “The Gilded Age” by award-winning reporter Scott Eden. Gold mined in the jungles of Peru brought riches to three friends in Miami—but it also carried ruin.

Scott Eden | The Atavist | January 2021 | 5 minutes (1,352 words)

 

The Atavist 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 magazine member.

In 1511, the king of Spain gave his New World explorers an order: Get gold, humanely if possible, but at all costs get gold. Humanely was not how it happened.

When gold was discovered on Hispaniola, the native population was forced into serfdom to mine it. Within a few decades, the Taino people had been almost completely “exterminated in the gold mines, in the deadly task of sifting auriferous sands with their bodies half submerged in water,” writes Eduardo Galeano in his seminal book Open Veins of Latin America. Rather than carry on, some of the enslaved people killed their children and then themselves. Francisco Pizarro’s men entered the Temple of the Sun in Cuzco, the Incan capital in modern-day Peru, and melted down breathtaking works of high-karat art because bars were easier to stack and transport back to Spain. Hernán Cortés did the same after he captured the Aztec treasure house. “They crave gold like hungry swine,” one Aztec observer said of European invaders. A conquistador named Hernán de Quesada, whose brother founded Bogotá almost incidentally while searching for El Dorado, also set off in search of the mythical golden city, taking 6,000 captured natives into the jungles and mountains of what is now Colombia. None survived.

Gold wasn’t the only metal the Spanish wanted. In Quechua, the language of the Inca, the mountain was called Sumaj Orko, “beautiful hill”—a perfectly shaped conical peak made almost entirely of silver that sits in present-day Bolivia. In 1573, colonists began conscripting indigenous people to toil in the mountain’s shafts, working under a form of forced labor known as the mita system. “It was common to bring them out dead or with broken heads and legs,” wrote a contemporary observer. The biggest boomtown in world history, Potosí, grew at the foot of Sumaj Orko; its population at one point rivaled Paris’s. Up to eight million people, many of them children, are estimated to have died working in Potosí’s mines.

Spain was merely a middleman for all the blood metal. The crown used its colonial spoils to pay off the massive debts it had accumulated in Europe’s banking houses. Gold and other precious metals financed the late Renaissance and, next, the industrial revolution.

The pillaging continued, bringing with it other forms of cruelty. In the 18th century, the miners who came to the Minas Gerais region of Brazil during a gold rush were also slave traders; they preferred buying their human beings from the West African slave port of Ouidah, because the people sold there were said to possess magical powers for divining the richest sources of gold. In 1886, after gold was discovered in Tierra del Fuego, a European engineer orchestrated a genocide there, exterminating the Selk’nam people, hunter-gatherers who had lived in the region for millennia. In the 20th century, General Augusto Pinochet abolished the rights of mine workers in Chile’s lucrative high-desert gold and copper pits. Vladimiro Montesinos, Peru’s murderous spy chief, allegedly took bribes from multinational mining corporations to help them secure control of Yanacocha, which in the 1990s was the world’s most productive gold mine.

By then a new kind of colonist had emerged in Peru. On foot, they came down from the Altiplano, from some of the poorest places on earth, migrating to low-lying rainforests where they’d heard gold was in the ground. They hoped that the tools and skills their forebears had used since time immemorial—shovels, portable sluice boxes—would help them find wealth.

They came to a remote department in the country’s southeast called Madre de Dios—Mother of God—that was covered almost entirely with dense jungle. In time, the new colonists earned enough money to rent heavy equipment. They could dig faster. There were no laws to stop them; squatter’s rights ruled. You took what you wanted. The miners began tearing down forests, clearing the way to search for the glittering flakes that could change a man’s life forever. Or end it.

Peru is the kind of place, in the words of one gold industry participant, ‘where you can do everything right and still get in trouble.’

There once was a sawyer who lived in the rainforest. His name was Alfredo Vracko Neuenschwander, but everyone called him Don Alfredo. He grew up in Madre de Dios. His father, also a logger, was an immigrant from Slovenia, but Don Alfredo treated the forest like he was a native. He took from it only what he and his family—a wife, a daughter, and two sons—needed to survive.

Don Alfredo was tall and slim, and he wore black horn-rimmed glasses that made him look like an Apollo mission engineer. His timber concession, which he obtained in 1975, was located in a part of Madre de Dios called La Pampa. To the west was the high sierra. To the east was the jungle, vaporous and immense. Don Alfredo and his family lived in a small compound—a house and a handful of outbuildings—in a one-hectare clearing he’d hacked out of the jungle. The roofs were thatch. There was no electricity. He’d built everything himself out of the wood—achihua, pashaco, copal, tornillo—found on the roughly 6,000 acres of his concession. His sawmill consisted of wooden poles propping up a metal roof over a large circular saw and an ancient planer manufactured by the American Saw Mill Machinery Co., in Hackettstown, New Jersey. Nearby was an orchard of yucca, papaya, banana, and cupuaçu, a football-shaped fruit with meat prized for its pear-like taste. Fat boas slid under the fruit trees. Flocks of oropendola birds shrieked in the canopy alongside howler monkeys.

For the better part of a decade, starting in 2007, Don Alfredo tried to save his land and the rest of La Pampa from informal gold mining. It was then, and remains today, an industry of wildcatters: people who don’t pay taxes, who don’t bother to seek government licenses or perform environmental-impact studies, who just start digging. Informal mining accounts for as much as 20 percent of the world’s newly extracted gold. In other words, up to one-fifth of the global gold business, worth more than $30 billion a year, according to some estimates, is a black market. And like all black markets, the illegal gold trade is vulnerable to the whole range of organized iniquity: bribery, human trafficking, money laundering, murder for hire, terrorism. The South American gold business is particularly fraught with these dangers, the Peruvian one perhaps most of all. It’s the kind of place, in the words of one industry participant, “where you can do everything right and still get in trouble.”

No one knew the ugly side of Madre de Dios better than Don Alfredo. On a sunny November day in 2015, he waited for the authorities to arrive. At his behest, they’d scheduled an interdiction—the Peruvian National Police would go into the jungle, find a mining site that Don Alfredo had recently reported, chase off or arrest the miners, and destroy their equipment with explosives.

Afternoon turned into evening. The police were delayed. The setting sun flared off the nearby Guacamayo, a stream that runs into the Rio Inambari, which flows into the Rio Madre de Dios (from which the region takes its name), which runs into the Beni, which joins the Mamore, which feeds into the Madeira—a tributary, at last, of the Amazon. Don Alfredo stood on the balcony of his home, listening for the sounds of arrival: the motors of police vehicles turning into his driveway off the Interoceanic Highway, which stretched from Rio de Janeiro to Peru’s Pacific coast. Completed a few years prior, the highway had transformed a series of rude dirt tracks and ancient footpaths into a modern thoroughfare navigable by trucks and heavy equipment, easing the way for miners to infiltrate ever more deeply into Madre de Dios.

Don Alfredo almost certainly would have heard the motorcycles approach, their rumble fainter than the phalanx of police vehicles he’d expected. The two bikes appeared on his property, carrying four riders. The men stopped in the driveway and dismounted. They were carrying guns and wearing black balaclavas.

Don Alfredo opened his mouth to scream.

 

Read the full story at The Atavist

The Geography Closest In

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

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

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

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

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

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

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

* * *

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

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

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

* * *

And then.

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

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

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

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

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

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

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

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

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

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

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

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

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

* * *

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

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

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

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

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

* * *

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

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

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

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

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

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

* * *

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

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

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

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

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

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

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

This excerpt has been lightly adapted for publication on Longreads.

* * *

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

Editor: Cheri Lucas Rowlands

‘Everyone Benefits from a Frozen Arctic’

Photo by Wolfgang Kaehler / Getty Images

At Granta, Canadian Inuit activist Sheila Watt-Cloutier recounts her community’s ancestral way of life: one based on hunting and gathering traditions that convey a deep respect for the animals and land that offer sustenance, and one that has been all but destroyed by government paternalism and climate change. She argues that the Arctic’s health is a barometer of the planet’s health and that the earth can still heal, provided we prioritize it over economic growth.

With the signs of spring all around me, and my dreams of soon being able to get out on the land again, in season to go berry picking with fellow Inuit women, it’s perhaps not surprising that my thoughts have turned to the place of nature in Inuit life. In our language we have no word for ‘nature’, despite our deep affinity with the land, which teaches us how to live in harmony with the natural world. The division the Western world likes to make between ‘man and nature’ is both foreign and dangerous in the traditional Inuit view. In Western thinking, humans are set apart from nature; nature is something to strive against, to conquer, to tame, to exploit or, more benignly, to use for ‘recreation’. By contrast, Inuit place themselves within, not apart from, nature.

From the start, the government’s policy to move us ‘off the land’ was misguided and paternalistic. The idea was to make the ‘administration’ of Canada’s Eskimos (as we were then called) easier. We were seen as a problem needing to be fixed. This would be mended by gathering us into settlements, building houses for us and ‘educating’ our children in English with a ‘Dick and Jane’ curriculum, an education that had nothing to do with what we knew to be the real world. We would partake of the government’s assistance programmes such as family allowances (which sometimes could be withheld if we didn’t send our children to school) and, when needed, social assistance payments and subsidized housing. Along with the provision of health services, these seemingly positive enticements were difficult to resist. Nowadays we recognize these offerings as coercive, though strangely packaged in well-meaning wrappings.

With the move, things happened very quickly. At first, we expected that this new world in which we suddenly found ourselves would be as wise as our own. But it wasn’t. It turned out that our new world was deeply dependent on external political and economic concepts and forces utterly at odds with our ways of being. In particular its structures seemed to have nothing to do with the natural world. Almost immediately, we started to give away our power. For a while we thought that if we were patient – as the Inuit hunters necessarily are – that patience would pay off. But we soon lost that sense of control over our lives, especially over the upbringing of our children. They were brought into the classrooms of southern institutional schooling, a concept totally foreign to us, where they were given an ‘education’ that had nothing to do with the knowledge and skills we needed for life on the land. All our traditional character-building teachings went out the window, and our social values began to erode. When we surrender our personal autonomy, we also give away our sense of self-worth, we lose the ability to define ourselves and to navigate our own lives.

Our Arctic home is a barometer of the planet’s health: if we cannot save the Arctic, can we really hope to save the forests, the rivers and the farmlands of other regions?

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Ten Outstanding Short Stories to Read in 2021

Author Kelly Link (Photo by Awakening/Getty Images)

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

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Neighborhood Watch: The Strange Aftermath of a ‘Karen’ Encounter

Roc Canals

As racial justice protests swept across America this summer, a handful of “Karen” videos — footage of white women calling the police on Black people, usually men, for no justifiable reason — went viral. Among them was a video shot in Montclair, New Jersey, a community about 40 minutes outside New York City that prides itself on being diverse and progressive. The people who filmed the scene were a Black husband and wife, both lawyers, whose backyard neighbor, a white woman, claimed they’d “pushed” her off their property for asking questions about the installation of a patio. As Allison P. Davis documents in her nuanced, provocative feature for The Cut, other white neighbors stood in solidarity with the Black couple:

While on the phone, Schulz paced in a circle. She approached a neighbor on the sidewalk, perhaps looking for someone to corroborate her story, perhaps just looking for sympathy. “Did you just see him physically push me?” she yelled.

“Oh, he absolutely didn’t push her,” reported the neighbor who had walked by. “I think she was looking to me — honestly, it did feel like a look of incredulity. Can you believe what he’s saying to me? I understand she was upset, but that’s just an insane trope that goes back so many hundreds of years of white women saying that Black men are assaulting them. And it was just really unbelievable she thought she would get away with that with witnesses.”

Over the phone, Schulz told the police, “I need an officer … the gentleman who is taller than me pushed me off his property.”

Neighbors began to yell things like “Shame on you” and “In this climate, you’re doing this?” while Schulz continued her defense, sometimes to the neighbors, sometimes to Norrinda and Fareed. “He pushed me ten feet … I came over here alone. I should have brought my son … Are you gonna say you didn’t put your hands on me?”

“It was like, Yo, this woman really believes what she’s saying,” Fareed recounted. “I feel like, in her mind, she really did start believing that she was assaulted. Maybe she was affronted by being told no. But for her, that affront was synonymous with me physically assaulting her. There was no difference in her mind.”

But when it came to neighbors supporting neighbors, the fallout of the incident was — in a word — complicated. There was a youth-led protest in front of the woman’s house, demands for a new ordinance about racist 911 calls, and letters that strangers sent to the Black family, apologizing for racism. In these, Davis saw something familiar:

That same summer, every white person I knew offered to march alongside me at rallies. I got texts from “Maybe: Susanna,” a person I didn’t really remember, dredging up a racial transgression I definitely didn’t remember. Borrowing the newly learned language of anti-racism, she apologized for any micro-aggression she had committed and apologized for making it my responsibility to explain HBCUs to her. I wrote back and told her “no sweat.” (It later turned out she had confused me with another Black colleague.) She was one of many who reached out to ask how they could be a good ally and wondered if there were times they hadn’t been. My phone was constantly buzzing with texts from white friends apologizing, checking on my well-being, offering me Venmo reparations and sympathy and empathy. I was appreciative but wary. They said they wanted to know about my experiences, but mostly they wanted to feel they had acknowledged that I’d had experiences with racism that they might have ignored, without exposure to all the grisly details.

In talking to Fareed, I often felt he was holding two opposing thoughts in his mind: relief that he lives in this intentional community that discusses race, that embraces the 24 percent, and loneliness at being at the center of a conversation in which everyone sees you and no one does. There can be an oppressiveness to sympathy, a way in which a newly galvanized community doesn’t let in room for doubt — for wondering whether the community would have been quite so galvanized if it hadn’t been the peak of a summer of racial-justice protests, if you still had locs or a shitty car in your driveway, or didn’t have a law degree, or your wife wasn’t the president of the PTA. When everyone is working so hard, when everyone is so vocally on your side, so apologetic for your experience, it’s easier to accept “Kumbaya” Montclair than to wrestle with those questions and ask other people to wrestle with them too.

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