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Switch at Birth — But How?

From left: Rita and Ches Hynes; Mildred and Donald Avery / Jessie Brinkman Evans for The Atavist

This is an excerpt from The Atavist‘s issue no. 113, “The Lives of Others,” by writer Lindsay Jones. In remote Newfoundland, a search for answers about a series of baby mix-ups leads to a woman known as “Nurse Tiger.”

Lindsay Jones | The Atavist | March 2021 | 5 minutes (1,556 words)

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Rita Hynes lugged her pregnant body up the rural hospital’s wooden steps. It was the night of December 7, 1962, and her rounded belly tightened with each contraction. At just 20, Rita knew what she was in for. She had given birth two years prior, to a girl. Rita wasn’t married then, so the priest from her Catholic fishing hamlet on the southern coast of Newfoundland had snatched the infant from her arms and slapped Rita across the face. The baby would be raised by an aunt and uncle.

Rita, a slip of a woman, with blond hair and a rollicking laugh, soon became pregnant again by the baby girl’s father, a burly, blue-eyed fisherman named Ches Hynes, who was 11 years her senior. The couple married in the summer of 1961, the same day their son Stephen was born. But their happiness was short-lived: Stephen died as an infant, in his sleep.

Now Rita was pregnant for a third time. At the hospital, she felt the intensifying crests of pain—at first bearable, and then searing as the night wore on. Just after midnight, she heard the cries of her eight-pound baby pierce the air. A boy! She named him Clarence Peter Hynes, after his godfather, who was a close friend of her husband’s, and her brother, who had died in a fishing accident. Clarence was deposited in the hospital’s nursery and tucked into a bassinet, while Rita dozed in the women’s ward. This time, she surely hoped, no one and nothing would take her baby.

Clarence, whom everyone calls Clar, grew up in a fishing town, St. Bernard’s, perched on the edge of Newfoundland’s Fortune Bay. He was the first in a steady stream of infants to arrive at the Hyneses’ home, a small taupe bungalow on a hill overlooking the quay, with its fish sheds painted the bright colors of jelly beans. As a youngster, Clar watched out the kitchen window for boats steaming into the crescent-shaped harbor and then furiously pedaled his bike down to the wharf. He earned $4 an hour unloading and weighing nets teeming with squid and silver cod.

Clar slept in a top bunk in a room he shared with his brothers. They were fairer than he was—Clar had a toasty complexion and a thick head of dark hair. When they wanted to torment him, his brothers called him Freddy Fender, after the Mexican-American musician. He grew to become a local heartthrob, with a chiseled brow and lean, muscular frame. Clar was a natural athlete who excelled at hockey and cross-country. Rita, a typical hockey mom, banged on the glass during his games and leaned over the railings to yell at the referees.

At 16, when Clar left home for Ontario to work on the Canadian Pacific Railway, Rita cried for days. She knelt on a chair at the kitchen window, clutching her rosary beads and praying to God to bring her son back. She kept all the letters he sent her in her closet. When Clar did return, driving his navy blue Chevy Camaro into the village after many months away, the teenage girls of St. Bernard’s swooned. “Oh, Clar is so handsome!” his sister, Dorothy, remembered hearing again and again—her friends were always talking about her big brother.

Clar was 24 when he met a woman named Cheryl at a motel bar in Marystown, farther down the boot-shaped peninsula from where he grew up. Clar had an on-and-off girlfriend at the time, but when he saw Cheryl he was smitten. With pretty, bow-shaped lips and curly blond hair, she was the belle of the bar. She’d recently moved back to Newfoundland from the Toronto area, where she’d worked as a hairstylist. Cheryl noticed Clar looking at her. She didn’t normally date guys from rural fishing communities, or “down over the road.” They were a hard bunch. But as she and Clar talked over beers and glasses of Screech rum and 7Up, Cheryl found him attentive and kind. They danced and chatted the night away. She didn’t want it to end.

They were married two years later in Marystown’s white, steepled Anglican church. The ceremony was packed to the gills with family. Rita wore a royal blue dress with puffed sleeves, and her husband Ches a dark gray suit. They were thrilled to see Clar tie the knot.

Rita was diagnosed with late-stage ovarian cancer a few years later, at 50. Clar nursed her as a mother would a baby. He held her and rocked her in the Hyneses’ old bungalow on the hill, making sure to face a window on the ocean so she could see the waves. Rita stayed with Clar and Cheryl at their home “in town,” as everyone calls Newfoundland’s capital city, St. John’s, during the futile treatment she underwent. Clar spoon-fed his mother bowls of fish and potatoes. He spent day after day with her right up until the end, so she would never be alone.

Five years after that, lung cancer took Ches.

Clar and Cheryl built a life together in St. John’s, raising three children of their own. When the fishery that had sustained generations of islanders collapsed, Newfoundland’s economy reoriented itself around the offshore oil and gas business. By 2014, Clar had a job as a welding foreman at Bull Arm, one of the industry’s major fabrication sites, where employees were building an oil platform that would eventually be towed out to sea.

That December, 52 years to the day after Rita brought him into the world, Clar overheard a woman in the hallway just outside his office sing out to a coworker, “It’s Craig’s birthday!” The woman’s name was Tracey Avery, and she was a cleaner at Bull Arm. She was talking about her husband, who also worked at the site. How funny, Clar thought. “It’s my birthday, too,” he said with a laugh.

“Yes, b’y,” Tracey replied. (B’y is pronounced “bye”—the Newfoundland expression is one of surprise, like “oh really?”) “How old are you?”

When Clar told her his age, Tracey’s next words came tumbling out: “Where were you born?”

“Come By Chance Cottage Hospital,” Clar said.

Tracey stood stock still for a second, her mouth agape. Then she ran, leaving her mop and cart behind. Clar shivered.

In that moment, a secret began to worm its way into the light: Another child had been taken from Rita Hynes—and she wasn’t alone.

On ‘the rock,’ as Newfoundland is affectionately known, your bay and your bloodline still define who you are—they are the first things people ask about when they meet you.

Depending on how you look at it, the stirring of this long-buried truth was sheer coincidence—one of those wild things that just happens—or it was inevitable, born of the quiddity of place. Newfoundland, the island portion of the sprawling Canadian province known as Newfoundland and Labrador, is a massive triangular rock in the Atlantic Ocean, colonized centuries ago for its fishing grounds. It has a rugged coastline, with hundreds of communities nestled into crooks, crannies, and coves. Some towns have blush-inducing names such as Heart’s Desire, Leading Tickles, and Dildo, and each is its own remote kingdom, fortified by rolling bluffs. Extended families are vast and tightly bound. For a long time they had to be. In such an austere place, it was a matter of survival. Today on “the rock,” as Newfoundland is affectionately known, your bay and your bloodline still define who you are—they are the first things people ask about when they meet you.

Getting anywhere along Newfoundland’s 6,000 miles of mountainous coast has always been a challenge. In the early 20th century, people in many of the island’s approximately 1,300 outports—the local term for fishing towns—had limited access to health care. Cottage hospitals, strategically located to serve dozens of outports at once, were intended to eliminate unnecessary death and suffering. They were a place to have your appendix out, get stitched up after an accident, or give birth and recover under the care of qualified doctors and nurses. They heralded a new dawn for Newfoundland. According to Edward Lake, a nurse and health administrator who worked in cottage hospitals and later wrote the definitive account of their history, they were the start of the most advanced rural health care program North America had ever seen, forerunners to Canada’s publicly funded national system.

The first seven cottage hospitals opened in 1936. One was located in the village of Come By Chance, which had been given its curious name by English colonists. As the story goes, in 1612, white explorers came ashore in one bay, only to discover a well-worn path to another bay on another coastline. The path had been cut by the indigenous Beothuk people. (The Beothuk were wiped out in the 19th century by the encroachment of white settlers.) The route led to the mouth of a river flush with salmon. It was a fortuitous find, which perhaps explains why the colonists later christened the settlement they built there Come By Chance. More than three centuries on, the village would prove a prime spot for a cottage hospital, with more than 50 outports close by.

The cottage hospitals were cookie-cutter clapboard buildings designed to be inviting. From the outside they looked like quaint residences. Strangely, in Come By Chance, the hospital was built the wrong way round, with its back to the road. For those inclined to superstition, the error might seem like an omen—a foretelling of bigger mix-ups to come.

 

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The Struggle of Having a Pandemic Baby

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Coping with the pandemic over the past year has been tough for many people — but imagine dealing with this strange new reality whilst also bringing a whole new person, or even two, into the world. Sophie Gilbert experienced this firsthand, explaining in The Atlantic how the only people to really see her pregnant were her husband, doctors, and doormen, with the isolation only increasing once her twins arrived. With powerful honesty, Gilbert explains the difficulty of becoming a new parent when your support systems are locked down. Not only do you have to figure a whole lot out for yourself, but your new identity as a mother occurs in a vacuum, with no one bearing witness to the transformation, or to the loneliness. 

Every person who’s given birth during the past year, I’d guess, has experienced a version of the same thing—a sense of isolation so acute that it’s hard to process. I was used to loneliness being something like a dull throb, a kind of ambient hum that rose or fell depending on what else was going on. The isolation of pandemic new parenthood was different. It felt like a wound. It stung bitterly from the very beginning, and every day that went by only made it more raw. Every milestone that my babies hit without anyone being around to witness it was colored with some grief. Every month we spent in the square-mile perimeter of our neighborhood made it harder to imagine ever leaving. Thanksgiving dinner, which we scarfed down on the couch after the twins fell asleep, was surprisingly comforting, but Christmas made me ache for everything it didn’t have. I can now see the same fragments of hope on the horizon that everyone can—vaccines, maybe a return to the office, some eventual imitation of “normalcy.” But the life that I had is gone, and I don’t know how to imagine a new one that has room for my children and anything else. Every second during which I’ve been a mother has been defined by closing off, shutting down, and retreating into a space small enough where the four of us can be safe.

Read the story

Out There I Have to Smile

Illustration by Ashanti Fortson

Heather Lanier | Longreads | March 2021 | 16 minutes (4,473 words)

 
A few years ago on a gorgeous June day, I found myself in a windowless bathroom with forget-me-not wallpaper, my butt on a toilet, without any good reason to be there. It was a standard mothering move. Beyond the door, I could hear my two small kids laughing and eating cereal, so I stayed in this little space, smartphone in hand. In an hour, I was headed to a bowling alley with my kids, both of whom could now walk through a doorway on their own. And this was a brilliant new development, not just for the 2-year-old who’d learned to walk at the standard age, but for the 4-year-old, Fiona, who’d spent the past three and a half years in physical therapy striving toward this lofty goal. Forty-five percent of people with Wolf-Hirschhorn syndrome walk, said the report when I first got her diagnosis. Her ability to walk meant I no longer had to consider wheelchair or stroller accessibility. Her ability to walk independently meant she could navigate the tight turns around a bowling ball return without having to steer a clunky walker. So I was taking my kids bowling, as soon as I stopped pretend-peeing and reading on my phone.

I was reading a friend’s blog post about a recent appointment with her counselor. As soon as she mentioned her son, who has the same chromosomal syndrome as my daughter, she began to cry. 

The therapist asked, “Why do you always cry when you talk about him in here?” 

In here was the therapist’s office, maybe a subdued room with sage walls and elephant statuettes. Out there, my friend pushed her 4-year-old son in a wheelchair. 

My friend looked up at the ceiling a moment and thought. Why do I always cry when I talk about him in here? The answer hit her, and she sobbed. She managed this sentence, eked out between heaving breaths: “Because … out there … when I’m talking … about him … I have to smile.”

I put my hand over my mouth. The windowless bathroom. The forget-me-not wallpaper. I burst into tears. 

* * *

For bodies that don’t fit into a certain mold, for bodies we call disabled, out there can be a treacherous space. Out there has steps where you need a ramp. Out there has strobe lighting that could make you seize. Out there writes stories over your body (she’s sad, broken, wrong) when you just need toilet paper. 

For parents of kids with disabled bodies, out there can be exhausting. It maintains chipper myths about babies that your child breaks. What’s with that feeding tube? It tosses questions at your feet like it’s throwing you something between flowers and rotten fruit. Why’s she so small? What happened? What’s wrong? You answer with a smile, or you answer with fatigue, or you turn your head because none of your business

Out there is risky. Your son might sit in a classroom led by a teacher who doesn’t believe he can learn. Or your daughter might need medical care from a doctor who thinks she’s a tragedy. 

Out there is inconvenient. The doorway isn’t wide enough for your adaptive stroller. The wood chips of the town’s only playground are terrible for wheelchairs. The librarian concludes public story time with a craft that requires scissors, and you must now serve as your child’s occupational therapist, back hunched, palms sweaty, enabling the arduous work of cutting paper.

Out there is not exactly designed for your kind. 

* I use both person-first and identity-first language in this essay. As a nondisabled person, I don’t have a right to claim an identity for someone, so I err on the side of identity-first language until I know a person’s preference — and my daughter hasn’t indicated one. I also use identity-first language to stand with disability activists who argue that linguistic acrobatics to avoid the word “disabled” are a manifestation of our culture’s ableism. We do not say, for instance, “I am a person with femaleness.” #saytheword

As a white, straight, cisgender, non-disabled woman, I must imagine how this sentiment holds true for other bodies. My experience as a caregiver to a kid with disabilities* has put me in the closest relationship to this truth. Out there is not designed for many. 

Which is why in here spaces are so delightful. And it’s why, especially in early parenting, I often lingered in them for longer than I needed. Idling in the bathroom. Struggling to leave the house. In here applies little pressure. In here asks no questions. In here often lets you and your kin be as you are.

In preschool, my daughter Fiona walked stiltedly. Her gait was not the smooth coordination of typical preschoolers. She slapped her right foot down, and her left foot followed pigeon-toed, afterthought more than intention. She sometimes held her arms out, and because she was nonverbal, she said, “Ahh, ahh,” plowing toward whatever caught her eye. When we were out there, people sometimes looked at her because she was adorable and magnetic and thrilled by life. And sometimes people followed her with a calibrating gaze. I could tell that they weren’t admiring the cuteness of youth but instead trying to answer the question, What’s wrong? 

“You’re lucky,” a pediatrician said to me during a routine checkup. “At least you know what’s wrong. Some parents don’t even know that.” He looked up from my kid, his eyes sharp with intensity, and nodded. “You know what I mean?” But it wasn’t a question. 

Nothing is wrong with my girl, I wanted to say.

No, of course not, the doctor might have corrected. Inside he’d likely think, Yes, of course there’s something wrong, and then he’d recite the long list of diagnoses in her medical file: epilepsy, hypotonia, hydronephrosis, scoliosis, developmental delay….

Things her medical file has never listed: loves coloring, loves cheese, rocks a Converse sneaker, appreciates jalapeños, finds the beat, will increase speed tenfold for a turn at the swing.

Wrong can slide too quickly into another concept: tragic. There’s a prevalent Hollywood cliché (which bears no resemblance to real-life statistics) that disabled people wish to die. I didn’t need a child with Wolf-Hirschhorn syndrome to spot this cliché; I’d noticed it years before I had Fiona. Million Dollar Baby: a female boxer triumphs in fight after fight only to break her neck, end up quadriplegic, and ask her coach to help her kill herself; he obliges. Me Before You: a grumpy guy in a wheelchair is hell-bent on committing suicide, then falls in love with his caregiver who tries to show him that life is worth living. He kills himself anyway, because, well, you know, wheelchairs. The films are dramatic expressions of the old, ableist assertion that I’d rather die than live like that. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth. What my friend and I have known, without ever knowing we’ve known, is that our culture judges the worth of our kids by judging our contentment. I hadn’t named this until I sat in the bathroom and read my friend’s blog post on my phone, but along with all the obstacles to surmount or circumnavigate or abandon, out there obliges us to offer our cheer. Are we happy? If so, then maybe the lives of our children aren’t tragic. Out there I have to smile. 

* * *

In The Spirit Catches You and You Fall Down, Anne Fadiman tells the story of Hmong child Lia Lee, who has severe epilepsy. It’s a highly lauded book, and for good reason. But midway through, Lia suffers a massive seizure, nearly two hours long, and goes from a happy, hyperactive child to a  mostly unresponsive quadriplegic. “Vegetative state,” the doctors said, and I cringed, eager for Fadiman to take the phrase to task. Because Fadiman had thus far done a beautiful job revealing the cultural biases of both the Hmong family and their Western doctors, I figured she’d unveil the ableism inherent in ever likening a human to a carrot or a beet. I thought of Martin Pistorius, who spent 12 years in an unmoving body that doctors assumed was also “as good as not there, a vegetable,” but as he says years later in his TED talk, “I was aware of everything.” 

Fadiman fails here. She doubles down on the doctors’ sentiment, offering this description of patients in so-called “vegetative states”: “pasty-skinned carcasses with slack mouths, hair like straw, bodies that smelled of urine even after they were bathed.” Carcasses. The word cuts. It describes shells in which humans once lived. It should not be used to describe actual humans, still living. Fadiman agrees with the family when they think Lia’s soul is gone.

At this point in the story, Fadiman pivots to the mother, oh the mother, and how she adapts to her child’s altered life. Fadiman paints some beautiful portraits. The mother lovingly washes her daughter once or twice a day. The mother wears her daughter in a hand-embroidered cloth carrier. The mother feeds her daughter spoonful after spoonful of rice and then kisses her rice-covered face. “Sometimes I thought: this is not so terrible,” writes Fadiman. Mid-page, I thought Fadiman might lean toward valuing Lia’s new, altered life. Admittedly, she’d do so through the trope of Lia’s gifts to nondisabled people. Look at how much love she brings her family. But gift is certainly better than carcass. 

Instead, Fadiman pivots: “But whenever I began to be lulled by this relatively rosy picture, I was drawn up short by an explosion of rage from [the father] or, more frequently, by a sudden seepage of grief from [the mother].” The parents’ feelings tip the scales. Fadiman can’t see the value of Lia’s life if it brings not just love but suffering, if caring for Lia is not just a tender and physical act of love, but also a grief-stricken, arduous job.

Out there we all have to smile. 

* * *

Happiness is an encouraged performance in America whether you’re disabled or not. By analyzing photographs, Stanford psychology professor Jeanne Tsai found that U.S. leaders are over six times more likely to display “open, toothy smiles” than Chinese leaders. This same smile, what Tsai calls “the sign of American happiness,” also appears more frequently in American children’s stories and women’s magazines than in East Asian counterparts. “A lot of immigrants have talked to me about how exhausting it is being in the United States,” she told NPR reporter Maiken Scott of The Pulse, “because you have to smile all the time.” 

But the stakes of that performance are higher for disabled people and their caregivers. Princeton ethicist Peter Singer has kept his job even after arguing that parents of disabled babies should have the right to kill their kids. Because people with disabilities cause too much suffering, he says. 

The birth of a child is usually a happy event for the parents. …  It is different when the infant is born with a serious disability. Birth abnormalities … turn the normally joyful event of birth into a threat to the happiness of the parents and of any other children they may have.

Parents may, with good reason, regret that a disabled child was ever born. In those circumstances, the effect that the death of the child will have on its parents can be a reason for, rather than against, killing it.

Singer, whose book Practical Ethics is in its third edition, at one point suggests that his argument about murdering babies applies to disabilities that make a child’s life “so bleak” that it’s “not worth living.” (How would anyone determine a life “not worth living”? And who gets to decide such a thing?) But then he argues that hemophiliacs too could be justifiably killed in infancy because a woman will only have so many children, and the hemophiliac child might prevent her from having another, healthier baby. “It is … plausible to suppose that the prospects of a happy life are better for a normal child” than for a hemophiliac, he writes. 

I think of my college roommate, a gregarious extroverted gay man who competitively roller skated and also had hemophilia. While he blasted Latin pop through our kitchen and danced with joie de vivre and sang into a spatula, I, the “normal” non-hemophiliac person, brooded in my room to the tune of melancholy female artists like Tori Amos, while writing poems about romantic angst. Certainly, disability doesn’t determine happiness. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth.

But the bigger issue is this: Why should a person’s happiness — or lack thereof — be used in proving their right to live? And it’s not just Singer who delivers this message. Here’s disabled writer Nancy Mairs on the subject, from “On Being a Cripple”: “In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple isn’t playing by the rules. Early on I vowed that, if I had to have MS, by God I was going to do it well. This is a class act, ladies and gentlemen. No tears, no recriminations, no faint-heartedness.” 

You’ll hear parents of kids with disabilities negotiate this pressure to be happy all the time when they describe their children. “He has Down syndrome, and he’s nonverbal,” a father will say, “but he’s happy!” Or a mother will say, “She has cerebral palsy, and she doesn’t walk, but she’s brought us so much joy!” We can’t fault the parents. They add this caveat of happiness because they know it carries necessary currency. 

But this can be exhausting. It turns happiness into a rhetorical strategy, and makes the faces of disabled people and their caregivers a walking argument that should never have to exist in the first place. 


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* * *

During Fiona’s second year, I started a blog called Star in Her Eye. I wrote it because my child’s eyes were bursting with divine luminescence, and yet an unsmiling pediatrician called her a “bad seed.” I wrote the blog because parents at playdates were talking about babyproofing their outlets, and I was talking about the interesting sculptures at the cardiac unit of the children’s hospital. I wrote it because my girl was coming up with ingenious ways to communicate despite her verbal limitations, and yet because she didn’t babble, an early interventionist declared her “at zero.” I was in a very different field of parenting than the baby books described, and I needed to find my people. I also needed to write about ableism — how I was encountering it, how I was exhuming it from myself. A deep and abiding ethics guided my decisions about what to write and how, but I always wore the weight of my words. Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden. 

In December 2015, three years into the blog, the disability-themed online venue The Mighty published a satirical article called “Introducing: Meltdown Bingo.” In it, an autistic parent of an autistic child used a bingo card meme to make light of her son’s meltdowns. Readers were rightfully outraged, blasting the article for objectifying a kid’s suffering. (It was eventually taken down.) Critics also noted The Mighty’s slant toward publishing, as blogger Savannah Logsdon-Breakstone put it, “warrior mommy blogger content … focused on bemoaning how hard it is to parent a child with a disability. … This is a dangerous narrative.”  

The outrage fueled important conversations about disability representation (#CrippingTheMighty). But articles also popped up admonishing parents for writing about their kids at all. In an article published soon after, the advocacy website Ollibean suggested that parents should not write about their children if they aren’t able to offer consent, a principle that would eradicate the stories of certain intellectually disabled people, pushing them and their caregivers — disproportionately women — to the unwritten, invisible margins. During the years that I wrote the blog, Fiona could not offer me consent, and one of the things I often wrote about was our very efforts to help her communicate so she could loudly disagree with me. But that took time — many years with therapists and a speech device.

The challenges of parenting a disabled child — “the prejudice and ableism, fighting systems for an equal education, equal and accessible medical care, accessibility, insurance coverage for a new wheelchair or communication device,” the Ollibean article noted — are injustices built into a system that needs to change. This is 100% true. But the quote fell under the subheading, “It’s Not Your Disabled Child, It’s the System.” In other words, parenting a kid with disabilities isn’t ever hard because of the inherent difficulties of a disability. 

It was not hard, for instance, taking my infant daughter to a swallow study (to make sure she wasn’t dying from her own spit) and two kidney reflux exams (to make sure these vital organs weren’t at immediate risk of failure). It was not hard spending four years helping her learn to walk, or three years helping her tiny, fine-motor-limited fingers navigate a robust communication device so she could tell us what she wanted to eat. Likewise, it was not hard when my husband and I hovered over her body as she jerked in convulsions, her eyes pried open by erratic brain synapses, and it was not hard to check the clock while we did this. More than five minutes, and a seizure can cause brain damage. 

Of course it was hard. Or, it was not hard because hard is the word we use to describe cellophane-wrapped candy, while this is blade-sharp, a knife slicing through the gut. 

But if we can’t say it was hard, then how can we affect any change that would help people in power understand what kind of support we might need?

And yet, if I do say it was hard, then I am fueling, as Logsdon-Breakstone put it, “a dangerous narrative.” I’m risking the chance that people will see my kid, my glorious beautiful curly-haired feisty stubborn rascal of a kid, and think, That mom’s unhappy; that kid’s life is tragic

Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden.

My facial expressions out there are territory over which ideologies are fighting. My emotions out there have rhetorical power. And I will use everything I have to argue that my kid’s life has equal value to anyone else’s.

So I’ve smiled. Especially in those early years, I smiled at the nurse who called my kid’s name in the waiting room. I smiled as she led us to a room for X-rays. How cute, she said to my 38-inch 5-year-old in purple hospital jammies. I smiled after I unfolded Fiona’s walker with a loud click at the library, eliciting stares, and I smiled while the teacher talked me through Fiona’s low report card scores. 

It wasn’t a conscious thing, the smiling, until I read my friend’s story while sitting in the forget-me-not-wallpapered bathroom. But when happiness becomes a rhetorical move, it’s a lot less fun than regular happiness. “The freedom to be happy,” writes Sara Ahmed in The Promise of Happiness, “restricts human freedom if you are not free to be not happy.”

* * *

In “Special Olympics and the Burden of Happiness,” Lawrence Downes of the New York Times argues that Special Olympics doesn’t give itself the freedom to be unhappy either. Downes describes the hours-long medal ceremony at the 2015 World Games as a “cascade of triumphant moments” and a “carefully thought-out strategy” where music swells and the crowd cheers as athletes receive their awards. According to Downes, the organization intentionally uses joy as a rhetorical strategy to advocate for the healthcare, education, and other rights of people with intellectual disabilities. The article acknowledges the global plight of people with intellectual disabilities, many of whom are denied an education, sequestered in institutions, and suffer abuse and neglect. If Special Olympics is trying for a revolution of sorts, “its revolution is televised, happily,” writes Downes, “on ESPN.”

But Downes subtly critiques the efficacy of this strategy, calling Special Olympics “an organization so good at making its athletes and the public happy, so bursting with good will and smiles, that nobody has to take it seriously. It has waged a nearly 50-year battle for inclusion and acceptance for people with intellectual disabilities, and people still think it’s a track meet.”

In March 2009, President Obama told Jay Leno of The Tonight Show about his recent bowling score of 129. “It was like Special Olympics or something,” he said with a laugh. Before the show even aired, he was on the phone, apologizing to chairman Timothy Shriver. According to Shriver, Obama invited the athletes to the White House to school him in the sport and “help him improve his score.” If the silence in news reports is any indication, the match never happened.

* * *

Our bowling match did happen. I eventually wiped my tears and left the in here space of the forget-me-not bathroom. I drove my kids to the bowling alley, parked the car in a blue-painted spot, and hung the handicapped placard on the rearview mirror. One by one, I hauled my kids out of their car seats. I held their hands as we crossed the parking lot. I opened the glass door for them, and in they walked. Right through the door.

When we got into the lobby, my heart sank: The lanes about 50 meters ahead were dark like a nightclub. Red and blue and yellow laser beams flashed across the floor, the ball returns, the scoreboards, and the seats. Pop music blasted from above.

From the shoe rental desk, my friend Kristy, Fiona’s godmother, came to us with a worried expression. “I’m sorry,” she shouted over the music. “They just turned them on.”

I exhaled. Kristy had called in advance to be sure, and the guy on the other end had said no, they didn’t do laser bowling during the day. 

I paused, standing near the entrance, trying to figure out what to do. “It’s not like she’s had seizures from strobe lights before,” I said, recalling the EEG where a technician flashed a light in Fiona’s face and measured her brain waves. “It’s just … it’s a risk.” Further inside, I watched the laser lights spin around, casting erratic, broken-up rainbows. New seizure triggers can emerge without warning in people with Wolf-Hirschhorn syndrome.

We rented our shoes and paid for a lane. The red and blue and yellow beams swirled around us. Miley Cyrus blared. “You wanna go first?” Kristy shouted two feet from my face. Any farther and I wouldn’t have heard her. Her teeth glowed white from the blacklight. I went after Fiona, who was toddling down the lane, ready to walk its length. The bottoms of her Converse sneakers glowed. 

The place was mostly vacant. Had anyone seen us in the dark, they would have seen two adults and two kids having a leisure afternoon. They would have seen the adults center a kiddie ramp at the top of the lane and help the kids push their balls down the ramp. They would have seen the balls make their slow-rolling treks toward the pins and knock a few down. Yay! the onlookers would have heard Kristy and me say as we clapped. The kids sometimes clapped too, and sometimes turned around unfazed, heading for another spot in the darkness.

These onlookers probably wouldn’t have seen my furrowed brow, or my eyes, straining in the dark, to assess whether my daughter was having myoclonic blinks or jerks. They wouldn’t have seen me silently curse this bowling lane for turning a fun outing into a shitty, stressful event. 

Neither would they have seen Fiona seize, because — thank God — she didn’t. And they probably would not have seen me smile much, either. But if I had smiled that day, it would have glowed bright as an incandescent bulb. 

* * *

In the summer of 2020, I published a memoir, Raising a Rare Girl. How could I write a book about Fiona that avoided the trap of the “my kid’s so happy” narrative? Because it turns out, my kid is happy — often exceedingly so. Fiona, now age 9, has way more joie de vivre than me. Though not yet a swimmer, she plows her body into ocean waves and screams with delight. She yawps for joy at the mention of Kit Kats. She is really, really stoked to go for walks around the block. She and my old college roommate would get along smashingly. And yet a story that emphasizes the “look, my kid is happy!” narrative would lodge her right into the very pressure Nancy Mairs identifies: “In our society, anyone who deviates from the norm had better find some way to compensate.” 

And how could I write a book that also avoided the “my kid is so hard” narrative? Because that’s true, too.

I tried to write a book that showed my daughter’s inherent value — and our culture’s denial of it — whether she was happy or not. I ended up writing a book about what it means to be human. “This belief in the virtue of the ‘happy’ and suffering-free life sterilizes and shrinks us,” I wrote toward the end, “minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy.” What I tried to do was show, honestly, the joy and the grief, the hard and the beautiful, and say: It all belongs. 

* * *

You ask: Am I happy? I say, sometimes less than before. Because she wakes six times a night. Because regular trips to pediatric specialists are no strolls through the park. Because special educators sometimes see her as broken, in need of fixing. Because her needs often exceed my energy. Because every time I’ve hovered above her convulsing body at night, counting the minutes, I might have gained something like courage or “life experience,” but I also felt gashed  in a bodily place that I can’t find, I can’t name. 

Because loving someone has never been so hard.

You ask: Am I happy? And I say, sometimes ten times more than before. Because her fine, blondish-brown hair brushes my cheek when we snuggle. Because her sapphire blue eyes seek out mine every day. Because at age 5, after three years of speech therapy, she at last made a hard C sound. Come, she said, and I did. Because when she was 4 and I asked which hat she wanted to wear, this one or that, she pointed and said “gamma!” (meaning “that one”) with such high-pitched glee that it felt like I held not a red wool ski cap but a lifetime supply of joy. Because the stress of a swallow study, the labor of an orthopedist’s appointment, and the fear of EEG results make the good news of a clear airway, an unchanged scoliosis curve, and an unworrying set of brain waves all the more glorious. 

Because loving someone has never been so hard.   

What I ask is that my answer doesn’t matter in determining her worth.

* * *

Heather Lanier’s memoir, Raising a Rare Girl, was a New York Times Book Review Editor’s Choice. Her recent essays appear in The Atlantic, The Wall Street Journal, and Off Assignment. She is an assistant professor of creative writing at Rowan University. You can find her on Instagram at @heatherklanier

Editor: Cheri Lucas Rowlands

Illustrator: Ashanti Fortson

Fact-checker: Nora Belblidia

The Top 5 Longreads of the Week

May 31, 1977 —Cambridge, MA — Photographs of American slaves, possibly the oldest known in the country, have been discovered in the basement of a Harvard University museum. Among the previously unpublished daguerreotypes discovered are these (L-R): a Congo slave named Renty, who lived on B.F. Taylor's plantation, "Edgehill"; Jack, a slave from the Guinea Coast (ritual scars decorate his cheek); and an unidentified man.

This week, we’re sharing stories from Clint Smith, Hanif Abdurraqib, Lise Olsen, Jaya Saxena, and Emma Carmichael.

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1. Stories of Slavery, From Those Who Survived It

Clint Smith | The Atlantic | February 9, 2021 | 29 minutes (7,250 words)

“The Federal Writers’ Project narratives provide an all-too-rare link to our past.”

2. Grief’s Anatomy

Hanif Abdurraqib | The Baffler | January 4, 2021 | 8 minutes (2,074 words)

“Hope awaits organizers like a trap.”

3. Undetected

Lise Olsen | Texas Observer | February 8, 2021 | 15 minutes (3,762 words)

“Prior to his arrest, local authorities had dismissed nearly all of those incidents as an unusual spike in natural deaths—a run of bad luck. But public records and interviews reveal that, time after time, investigators in Dallas made critical mistakes and overlooked or ignored signs of foul play.”

4. The Limits of the Lunchbox Moment

Jaya Saxena | Eater | Febuary 8, 2021 | 13 minutes (3,400 words)

“The story of being bullied in the cafeteria for one’s lunch is so ubiquitous that it’s attained a gloss of fictionality.”

5. Megan Rapinoe and Sue Bird Are Goals

Emma Carmichael | GQ | February 9, 2021 | 21 minutes (5,324 words)

“Sue Bird and Megan Rapinoe both had Hall of Fame–worthy careers before they met. But to reach new, boundary-obliterating levels of achievement on and off the field, they needed each other. And, as they tell Emma Carmichael, their work is just getting started.”

Closure for a Sister Disappeared

Novelist Daniel Loedel recounts the story of his older half-sister Isabel, who was disappeared in Argentina during the Dirty War, “the period from 1976 to 1983 in which the U.S.-backed military dictatorship kidnapped and killed tens of thousands of supposed dissidents in the name of fighting off communism.” In this harrowing piece at The Atlantic, Loedel seeks closure for a half-sibling he never knew, having been born 10 years after her death.

Here we must pull back the curtain, listen to what’s behind the silence. First, the cultural reasons: Although Argentina’s military dictatorship technically lasted only seven years, from 1976 to 1983, they were the bloodiest in the nation’s history, and few except the junta leaders themselves were put in prison. For years, people continued to encounter their former torturers at bus stations, their rapists in cafés. For years, the armed forces maintained power at a distance, with complete immunity. For years, there were no formal funerals for the disappeared.

The report from the Argentine Forensic Anthropology Team included 20 photos of my half sister’s bones—nearly as many photos as I had ever seen of Isabel herself.

The ones of the bones punctured by bullets—her rib, her pelvis, her humerus—did not move me as much as those of her skull. It was so old-looking, like one of those prehistoric craniums of Homo sapiens, the nose bashed in, some of the teeth missing, that earthen coloring. The skull had lain in a common grave, untouched for more than 30 years, before being taken to a lab, where it remained officially unidentified for about another 10. The sight of it destroyed me. In all the photos I had seen, Isabel looked incredibly young, with a cherubic beauty—round cheeks, light hair, searching blue eyes. She had been murdered and disappeared by the military dictatorship in Argentina in January 1978, when she was just 22. Staring at those photos of her skeleton in March 2018, I was eight years older than she ever had been. Never before had I quite grasped how much time she hadn’t gotten to live, to age and grow old, until I saw her bones, and realized they had been aging without the rest of her.

But no one told me what she was like, or who she’d been besides my sister. I gathered that she was rebellious, brave, idealistic. But the only attribute I comprehended with any sort of reality was: disappeared. My sister’s gone-ness, the silence around her, was so absolute that I barely dared to peek any further behind that curtain than my father did.

When he and I finally had an extended conversation about Isabel—whom I’d chosen somewhat flippantly as the subject for my college-application essay, as a way of conveying my own desire to do good in the world—I got the impression that she’d been killed for doing things like tagging walls and distributing political pamphlets. But Enrique later told me she was in fact one of the Dirty War’s rarer victims: She’d been in the armed resistance, living in hiding, with weapons in her home.

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The Top 5 Longreads of the Week

German flag fluttering front of Reichstag building. Berlin, Germany

This week, we’re sharing stories from Caitlin L. Chandler, Kelan Lyons, Daniel Loedel, John Colapinto, and Shay Castle.

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1. The Doctor vs. #MeToo

Caitlin L. Chandler | Columbia Journalism Review | January 19, 2021 | 25 minutes (6,432 words)

“How an HIV specialist in Germany is using media law to erase reporting of sexual abuse allegations against him.”

2. After killing his cousin, Clyde Meikle found purpose in prison through service. Now he’s asking to go home.

Kelan Lyons | Connecticut Mirror | January 16, 2021 | 20 minutes (5,342 words)

Incarceration led to a rebirth for Clyde Meikle.

3. My Sister Was Disappeared 43 Years Ago

Daniel Loedel | The Atlantic | January 17, 2021 | 14 minutes (3,508 words)

“A casualty of Argentina’s so-called Dirty War, Isabel haunted my childhood like a ghost. Then I started searching for her.”

4. The Day My Voice Broke: What an Injury Taught Me About the Power of Speech

John Colapinto | The Guardian | January 19, 2021 | 18 minutes (4,655 words)

“I had always known that the voice is a kind of aural fingerprint, something unique to every individual and from which listeners draw strong inferences. But in “speaking around” that injury, I was apparently projecting a new personality into the world: a more monotone, less enthusiastic, less engaged personality.”

5. Life and Death with a No-Good, Grumpy Dog

Shay Castle | Boulder Beat | January 2, 2021 | 14 minutes (3,688 words)

“The other thing people say when a pet dies is, ‘She had a good life.’ But did she?” Shay Castle pens a moving obituary for her dog, Sydney.

Ten Outstanding Short Stories to Read in 2021

Author Kelly Link (Photo by Awakening/Getty Images)

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

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Longreads Best of 2020: Investigative Reporting

All Best of Longreads illustrations by Kjell Reigstad.

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

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* * *

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

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

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

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

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

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

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

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

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

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

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

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

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Longreads Best of 2020: Arts and Culture

All Best of Longreads illustrations by Kjell Reigstad.

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

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* * *

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

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

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

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

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Longreads Best of 2020: Writing on COVID-19

All Best of Longreads illustrations by Kjell Reigstad.

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

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

* * *

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

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

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

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

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

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

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

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

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

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