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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

Listen to the Sound of My Voice

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Not long after journalist Minelle Mahtani began hosting her own radio show in Canada, her mother was diagnosed with tongue cancer. In a poignant essay for The Walrus, Mahtani explains how she was suddenly confronted with the painful reality that, just as she was finding her voice, her mother was losing hers:

I remembered the words of poet Rita Wong. “Habitual placement of the tongue changes the mouth. When the tongue is still, are you quiet enough to hear the dead? Quiet enough to hear the land stifled beneath massive concrete? Quiet enough to hear the beautiful, poisoned ancestors surfacing from your diaphragm?” All the stories of my ancestors, buried in my mother’s mouth, stories I would never hear again.

For years, I saw my mixed-race self as solid proof of the promise of mending. Now, my body felt torn apart: voice, sound, soul gone fugitive. My mother was a poised, sophisticated Iranian woman. Her skin was light and she was Muslim. My South Asian father was dark skinned and Hindu. These descriptions do nothing to fully capture their characters, of course. But this is what people wanted to know, always want to know. People knew I was something different, exotic—that awful word—they just weren’t sure what. My mother’s presence had always steadied me, provided me with the faith and sanctity to honour my family’s complex and colonial histories. What would I do without her voice?

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

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

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

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

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

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Life and Love in the Utah Desert

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In this immersive piece for Outside, Mark Sundeen writes about his last two decades spent living in a trailer in Moab, Utah. An English major from San Francisco, when he first arrives in the “sweltering hamlet” Sundeen finds himself in awe of the rugged characters he meets. Ashamed of his own bookishness, he seeks to hide it and emulate their qualities, to become “the sort of man who is competent with chains and repairs, rough roads and icy curves.” He also finds himself drawn to the new type of women he meets, none more so than Wendy. Sundeen develops an obsession for the former rancher that lasts for years, to the detriment of other relationships. Sundeen describes his romantic history with great self-awareness, painting a vivid picture of the women in his life, as well as the arid atmosphere of the Moab desert that forms a backdrop to his personal development.

The upshot of seeing Wendy was that when I moved back to Moab in that summer of 1999, age 28, she rented me the trailer for $300 a month. I wouldn’t trouble her with complaints but would do any repairs myself.

I woke each night at 3 A.M. with my lungs clenched and visions of Q in my head. She’d been seen in Moab with that snowboarder. Now and then I’d call and tell her how she betrayed me. I wallowed in the fantasy of my unrequited longing.

The story I told myself eventually unraveled. I replayed the memories. That night she offered herself to me: I hadn’t declined out of some sense of chivalry. It was because, even as every molecule burned to make a child with her, I couldn’t envision us raising the thing. All I could see us doing was smoking in bed and engineering increasingly innovative paroxysms. Which was what I thought love was.

Q already saw me more clearly than I did. I had shown her my heart, and she’d seen the cautious vanity I couldn’t hide. In the future I wouldn’t be so embarrassed to be a delicate writer, and I would treasure the exchange of ideas about literature and writing with a woman. But not yet. I still couldn’t see past my own delusion.

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The Top 5 Longreads of the Week

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This week, we’re sharing stories from Max Blau, Venessa Wong, Hope Wabuke, David Dayen, and Mark Sundeen.

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1. The Coal Plant Next Door

Max Blau | ProPublica | March 22, 2021 | 9,852 words

“Near America’s largest coal-fired power plant, toxins are showing up in drinking water and people have fallen ill. Thousands of pages of internal documents show how one giant energy company plans to avoid the cleanup costs.”

2. This Is Where 150 Years Of Ignoring Anti-Asian Racism Got Us

Venessa Wong | BuzzFeed News | March 20, 2021 | 5,050 words

“For so long, we’ve thought keeping our heads down and being invisible in America might help us gain acceptance — but the recent wave of racist violence has shattered that myth.”

3. Disney’s Disembodied Black Characters

Hope Wabuke | LA Review of Books | March 23, 2021 | 5,395 words

“Green, blue — Disney has no problem with characters that are different colors, it seems, as long as that color is not brown. What does it say to Black kids watching when the world’s biggest children’s entertainment company cannot give them even one animated film that features a Black person that stays a Black person throughout? What does this say about Blackness to kids who are not Black? About whose life is being portrayed as mattering? And whose does not?”

4. Islands in the Stream

David Dayen | American Prospect | March 22, 2021 | 7,400 words

“Musicians are in peril, at the mercy of giant monopolies that profit off their work.”

5. Notes from a Moab Trailer

Mark Sundeen | Outside | March 23, 2021 | 8,655 words

“I didn’t hear from her. I had flings with other women, but nobody equaled her. Unable to maintain a relationship, I got a dog, a heeler mutt puppy I saw in a cardboard box at the supermarket. I named her Sadie. When Wendy returned a year or so later, she was with a new guy, a fisherman, long hair and a beard, engaged to marry.”

The Top 5 Longreads of the Week

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This week, we’re sharing stories from Alexander Chee, Matt Gallagher, Delphine Minoui, Lauren Markham, and Jamie Figueroa.

Sign up to receive this list free every Friday in your inbox.

1. Anti-Asian Violence Must Be a Bigger Part of America’s Racial Discourse

Alexander Chee | GEN Magazine | March 15, 2021 | 12 minutes (3,194 words)

“White people still drive the narrative about Asian Americans. We have yet to have control over our own stories.”

2. In ‘Cherry,’ the Bank Robber Is the Victim. What About the Teller He Held Up?

Matt Gallagher | The Intercept | March 13, 2021 | 26 minutes (6,700 words)

“Erasure doesn’t have to be an act. It can be a process too.”

3. Hunting For Books in the Ruins: How Syria’s Rebel Librarians Found Hope

Delphine Minoui | The Guardian | March 16, 2021 | 17 minutes (4,310 words)

“Most of them had already lost everything – their homes, their friends, their parents. Amid the chaos, they clung to books as if to life, hoping for a better tomorrow, for a better political system.”

4. The Crow Whisperer

Lauren Markham | Harper’s Magazine | March 15, 2021 | 19 minutes (4,800 words)

“What happens when we talk to animals?”

5. The Stories I Haven’t Been Told

Jamie Figueroa | Emergence Magazine| March 11, 2021 | 22 minutes (5,690 words)

“Jamie Figueroa brings her pen to the blank pages of her family’s history, navigating generational trauma and lost ancestral stories in order to reveal and reclaim her cultural and familial inheritance.”

Pop Culture Portrays OCD as a Blessing. It’s Not.

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We’ve been fortunate to publish Lisa Whittington-Hill in the past. Learn why Courtney Love deserves to be the girl with the most cake. Check out “Live Through This: Courtney Love at 55.”

At The Walrus, Lisa Whittington-Hill looks at how media has portrayed people with obsessive compulsive disorder (OCD) “as Type A clean freaks, Sheldon Cooper–like nerds, productivity machines, or eccentric weirdos.” With characteristic wit, Whittington-Hill says that these stereotypical portrayals betray the true experience of people with OCD. Pervasive, inaccurate stereotypes have allowed some to misuse the term to refer to someone who simply prefers organization over disorder. Think Monica Geller from Friends. Whittington-Hill says that living with OCD — a mental illness — exacts a far greater toll and for her, one that she pays by isolating from others.

The obsessions—the unbidden thoughts driving the compulsions—are comparatively less discussed. When I try to explain my OCD to people, they don’t understand the fears and anxieties that drive these compulsions or what the repeated actions are meant to accomplish. I don’t check taps because I am really into ornate faucet design. I do it because it is the only way to quiet my brain.

I once heard OCD described, very accurately, as a record skipping in your head. The checking routine I have before I leave my apartment can take anywhere from thirty minutes, on a very good day, to two hours, on a very bad one. There is a voice in my head that won’t go away, repeating: “You must check the fridge door to make sure it is closed, or the fridge will defrost. All your food will go bad and your kitchen will flood. It will destroy your apartment and the one below it.” I pray that my foot won’t hit the overflowing recycling bag in my kitchen that sits directly across from the fridge. If my foot hits it, it disrupts my very specific, everything-in-its-place checking routine, and I have to start all over again. Repeatedly checking the door helps to calm all the fears I have about what disasters could happen if the door were left open. These fears may seem irrational, even ridiculous, to others, but they are very real to me.

My OCD makes me feel like a bad friend, a bad coworker, and a bad daughter. I can’t show up places on time and I feel like I am always apologizing for being late. I can’t travel easily and I avoid doing so whenever I can. If I do have to travel, I start dreading it months in advance. My pre-leaving-my-apartment routine is nothing compared to my routine for leaving my apartment for a vacation. I often cancel plans so I can avoid having to leave my house at all—the thought of going through my checking is too exhausting to contemplate.

As a result, I isolate myself. I live in fear of people laughing at me, which they have. I avoid relationships because I can’t imagine someone staying at my house for a night. “Just go to bed. I’ll be there in a couple of hours, after I check the windows repeatedly to make sure they are closed because I am worried that, if they aren’t, someone will somehow scale the side of my building, climb three floors, cut the window screen, and enter the bedroom to kill us.”

Who’s in the mood for romance now?

I RECENTLY REALIZED that I went three months without using my stove, reasoning that, if I never turned it on, then I didn’t have to worry about checking it. If food needed to be heated, I microwaved it or used boiling water from a kettle, or else I didn’t eat it at all. That lasted until I began to think about checking the microwave and kettle, at which point I switched to sandwiches and cereal. My OCD has cost me so many moments and opportunities.

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The Joy of a Pointless Walk

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Every time I call my mum in England I get an update on two things — the weather, (both current and the range of rain, from drizzle to pouring, that has been experienced over previous days), and how many steps she has managed on her Fitbit. Walking is truly an English obsession, and in my time I have done my fair share of trudging over soggy fields, on a path to nowhere in particular. 

I, therefore, took great delight in reading Monica Heisey‘s essay for The Guardian detailing a Canadian’s perspective on the English love for the aimless amble. A particularly exciting walk might end with a pint of beer in a country pub — a reward for slurping through the mud, but England is currently in lockdown and pubs are closed, so Brits are embracing walking simply for walking’s sake.  Heisey writes of her experience of this great British pastime during Covid-19 with wonderful humor — so take a break from your lockdown walk, make a nice cup of tea, and give this essay a read instead.

I am, it seems, comfortably in the minority. After the Great Walking Holiday of 2020, I encountered pro-walking sentiment everywhere. Friends tracked steps with competitive rigour, fighting to be the first to reach 10k a day, or announcing grand Sunday schemes to cross London on foot. Planning a weekend in Herefordshire, I was inundated with recommendations for the county’s excellent walks. In fact, Airbnb reviews in the UK tend to focus on two things: whether or not the property provides an adequate electric kettle, and the quality and abundance of nearby walking routes. Recently, watching The Crown on Netflix, I had the disorienting and novel experience of feeling sympathy for Margaret Thatcher who, in an episode set at Balmoral, is dragged out on the royal family’s favourite pastime, “walking around in terrible weather wearing the thickest socks imaginable”. The prime minister has not brought appropriate attire (brown shoes, aforementioned huge socks, waxed jacket, head hanky), and is treated with scorn for it. But why?

There is something in the British that mistrusts pleasure. Why sit and chat in your lovely rented holiday cottage when you can walk through 40 different kinds of mud wearing the wrong shoes, everyone trying tensely not to be the first person to suggest heading home? Why take a gentle cycle ride near your hotel (or tent or caravan) in the Lake District when you can load yourself up with too much expensive gear and walk for hours, the only delight ahead a faux chipper “Hiya!” to the other miserable, sunburned walkers you pass, everyone somehow too cold yet also sweating in their moisture-wicking gilets?

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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