Search Results for: Olympics

The Endgame of the Olympics

burning torch next to smoking torch
imagedepotpro / Getty Images

Dvora Meyers | Longreads | August 2020 | 5,722 words (23 minutes)

A year ago, back when we were still allowed to gather in groups larger than a minyan, activists convened in Tokyo to talk about how they were going to end the biggest global gathering of them all — the Olympic Games.

The activists came from all over: past host cities like Rio, London, Nagano, and Pyeongchang; future host cities Paris and Los Angeles; cities that had managed to derail their bids, including Boston and Hamburg; and places like Jakarta, which is gearing up for a 2032 bid.

They were in Tokyo exactly a year out from the scheduled start of the 2020 Summer Olympic Games, attending the first-ever transnational anti-Olympic summit, which was organized by Hangorin no Kai, a group of unhoused and formerly unhoused people based in Tokyo. The activists, along with academics and members of the media, talked about common Games-related issues, like displacement and police militarization, and discussed strategies for resisting local political forces and the IOC to protect their communities. Elsewhere in Tokyo, Thomas Bach, President of the International Olympic Committee, and the rest of the IOC crew had arrived to mark the start of the 365-day countdown to the Opening Ceremonies.

Eight months after these two very different gatherings in Tokyo, the IOC announced that the 2020 Olympics were going to be postponed by a full year due to the COVID-19 global pandemic. By the time they made the announcement, most other major sports tournaments planned for the summer had been canceled or postponed and the athletes, many of whom were shut out of training facilities due to lockdowns, were calling on the IOC to act for over a week. Once the IOC made the inevitable official, the athletes were able to reset and refocus their training on July 2021.

That even a stripped-down version of the 2021 Games will happen is hardly a foregone conclusion. The pandemic may not be under control by then. Even if it is, and even if an effective vaccine against the coronavirus is developed in time, the Games still might not happen. The postponement is likely going to add billions to a budget that was already triple that of the original projection of the Tokyo bid that the IOC had accepted in 2013. Public opinion in Japan seems to be swinging against the Games, too. In a recent survey, 77 percent of respondents said that the Olympics could not be held next year. In another poll, a slim majority of Tokyo residents said the same thing.
Read more…

The Untold Story of the 2018 Olympics Cyberattack, the Most Deceptive Hack in History

Longreads Pick

As the opening ceremonies of the 2018 winter olympics began in Pyeongchang, a cyberattack targeted the games’ digital infrastructure, jeopardizing WIFI connections, event tickets, and even the official Olympics app, packed full of information on event schedules, maps, and hotel reservations. Andy Greenberg examines who was behind the attack and why they wanted to publicly embarrass South Korea.

Source: Wired
Published: Oct 17, 2019
Length: 32 minutes (8,126 words)

An Oral History of Bob Costas Having Pink Eye at the Olympics

Longreads Pick

A look back at Bob Costas’ eye infection during the 2014 Olympics, which led to Meredith Vieira becoming the first woman to host prime-time Olympics coverage solo and countless memes.

Source: Vulture
Published: Feb 16, 2018
Length: 13 minutes (3,452 words)

The Fallacy of the Olympics

The velodrome is seen from outside the Olympic Park, in Rio de Janeiro, Brazil, Sunday, July 30, 2017. The velodrome built for last year's Rio de Janeiro Olympics suffered minor fire damage Sunday when it was struck by a small, hand-made hot-air balloon. (AP Photo/Renata Brito)

The Olympics have a problem. Countries that have bid and won the “honor” of hosting the games are finding it increasingly difficult to manage the after effects — from rampant growth to financial demands — that accompany inviting the world for a late summer visit every four years.

The last host city that substantially profited from hosting the Olympics was Los Angeles, which “earned” $93 million some thirty-plus years ago when it hosted the 1984 games. The southern California event set the template for Barcelona and Atlanta, two cities that re-envisioned their respective downtowns and central hubs thanks to the Olympics, but in the years since, it has been increasingly more difficult for host countries to justify pursuing the games, leaving too many empty and unusable stadiums in the wake.

Take Brazil. A thriving economy and a commitment to athletic excellence led Brazil to target landing the 2016 games, but the subsequent combination of a recession and various scandals have left the South American country — the first ever to land the Olympics — in tatters. Wayne Drehs and Mariana Lajolo of Doubletruck,’s longform vertical, explored what has happened to Brazil just one year after the Olympics left Sao Paulo, Rio de Janeiro, and its other cities:

The opening ceremony in Brazil’s famed Maracanã was the most watched in Olympic history. More than 2.5 billion people from around the globe tuned in as 11,000 athletes marched on the stadium floor holding a cartridge of soil and a seed from a native Brazilian tree. The athletes placed the cartridges into mirrored towers. Olympic organizers called the procession “Seeds of Hope,” explaining the containers would be planted as part of an Athlete’s Forest in the Deodoro neighborhood of Rio.

But now, just over a year later, there is perhaps no greater example of the Rio Games’ complicated legacy. The seedlings sit in planting pots under a sheer black canopy on a farm 100 kilometers from Rio. Prior to last week, Marcelo de Carvalho Silva, the director of Biovert, the company responsible for the seeds, hadn’t heard from Olympic organizers in months. He had no idea what the plans were for the seeds, but he painstakingly watched over them for free, knowing what it would mean for his company — and the country — if something happened to them.

Read the story

Why Hosting the Olympics Makes No Economic Sense

Before the 1990s hosting was usually a low-key affair. Los Angeles was the only bidder for the 1984 Olympics. It funded its games almost entirely with private money, as largely did Atlanta in 1996. Most football World Cups were played in scarcely renovated older stadiums.

But globalisation and new television channels showing sport changed that. Each new host raised the bar, with spiffy new sporting facilities. Politicians, needing to justify the rising cost, claimed that hosting would boost the economy. They invoked hordes of shopaholic visitors, the free advertising of host cities and the long-term benefits of the roads and stadiums that would be built. When Tokyo was named host of the 2020 Olympics, Shinzo Abe, Japan’s prime minister, said: “I want to make the Olympics a trigger for sweeping away 15 years of deflation and economic decline.”

Yet these claims of economic bonanza are false. Most economists agree that hosting big sporting events is an economic strain, says Stefan Szymanski, economics professor at the University of Michigan, with whom I have co-authored a book.

This is largely because the things a country buys for a sports tournament – stadiums, roads to the stadiums, extensive security – are rarely the things it needs for daily life. Often the venues become white elephants the moment the tournament ends. That happened in South Africa after the World Cup of 2010, and is forecast to happen to many Brazilian stadiums after this year’s tournament. London’s Olympic stadium eventually found a tenant, West Ham United Football Club, but the state is paying most of the costs of revamping the venue.

Simon Kuper, in the Financial Times, on the economics of hosting a major world sporting event. Read more on the Olympics.


Photo: rapidtravelchai, Flickr

We need your help to get to 5,000 Longreads Members.

Join Longreads now and help us keep going.

The Little-Known History of How the Modern Olympics Got Their Start

Longreads Pick

Tracing the modern Olympics back to their origin in rural England, where there was a very different set of competitive events:

“Ah, but in Much Wenlock, the Olympic spirit thrived, year after year—as it does to this day. Penny Brookes had first scheduled the games on October 22, 1850, in an effort ‘to promote the moral, physical and intellectual improvement of the inhabitants’ of Wenlock. However, notwithstanding this high-minded purpose, and unlike the sanctimonious claptrap that suffocates the Games today, Penny Brookes also knew how to put a smile on the Olympic face. His annual Much Wenlock games had the breezy ambience of a medieval county fair. The parade to the ‘Olympian Fields’ began, appropriately, at the two taverns in town, accompanied by heralds and bands, with children singing, gaily tossing flower petals. The winners were crowned with laurel wreaths, laid on by the begowned fairest of Much Wenlock’s fair maids. Besides the classic Greek fare, the competitions themselves tended to the eclectic. One year there was a blindfolded wheelbarrow race, another offered ‘an old woman’s race for a pound of tea’ and on yet another occasion there was a pig chase, with the intrepid swine squealing past the town’s limestone cottages until cornered ‘in the cellar of Mr. Blakeway’s house.'”

Source: Smithsonian
Published: Jun 29, 2012
Length: 25 minutes (6,278 words)

The Truth Is Out There: From The 1985 NBA Draft Lottery To The Olympics To Game-Fixing … Which Conspiracy Theory Can You Believe?

Longreads Pick

An investigation of sports’ biggest conspiracy theories, starting with the 1985 NBA draft:

“I believe in the fix. I believe in the hidden hand, that sports have a secret, redacted history. I believe that Game 6 of the 2002 NBA Western Conference Finals was a sham, that Spygate was a cover-up of a cover-up, that Super Bowl III was preordained, that Dale Earnhardt Jr.’s heartwarming 2001 victory at Daytona was, in fact, too good to be true, that Michael Jordan’s first baseball-playing retirement was anything but, that powerful forces don’t want me to write this because powerful forces don’t want you to read this. I believe that black is white, white is black, the 1990 World Cup draw was rigged[13] and Sophia Loren was definitely in on the con. Most of all, I believe that on June 18, 1985, inside the Starlight Room of the Waldorf-Astoria hotel in New York City, in front of Pat O’Brien and nearly 150 reporters and umpteen popping flashbulbs and an entire world utterly oblivious to the conspiracy about to take place before them in plain sight, David Joel Stern did not act alone.

“Of course, I might be crazy.”

Published: May 30, 2012
Length: 33 minutes (8,376 words)

Teen Mathletes Do Battle at Algorithm Olympics

Teen Mathletes Do Battle at Algorithm Olympics

Teen Mathletes Do Battle at Algorithm Olympics

Longreads Pick

Neal Wu’s last chance for international glory, and maybe America’s, too, begins with a sound like a hippo crunching through a field of dry leaves—the sound of 315 computer prodigies at 315 workstations ripping into 315 gray envelopes in unison. “You have five hours,” a voice booms across the packed gymnasium. “Good luck.”

Source: Wired
Published: Dec 1, 2010
Length: 18 minutes (4,531 words)

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. 

Kickstart your weekend reading by getting the week’s best Longreads delivered to your inbox every Friday afternoon.

Sign up

* * *

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