Search Results for: The Nation

“I Was at a Loss for Any Facts that Would Actually Stick”: An Investigative Reporter on Losing His Mom to QAnon

WASHINGTON, DC—JANUARY 06: Crowds gather outside the U.S. Capitol for the Stop the Steal rally. Photo by Robert Nickelsberg/Getty Images.

I Miss My Mom,” Jesselyn Cook’s HuffPost piece, is another read on losing a parent to QAnon.

At Buzzfeed News, Albert Samaha recounts his unsuccessful efforts to pull his mom out of QAnon. She had been an early adopter of the far-right conspiracy theory and has believed, since 2018, that Donald Trump is the anointed one — a savior in a war between good and evil. By 2020, it was clear to Samaha that there was no longer any “overlap between [their] filters of reality,” and he had given up trying to argue with her over basic, indisputable facts. After all, in her eyes, he was a dangerous member of the “liberal media” — a journalist of the “evil deep state.”

In the piece, Samaha traces his mother’s journey to QAnon, first explaining how she came to the U.S. from the Philippines and was initially indifferent to politics. But that changed during the 2000 presidential election, and in that race between George W. Bush and Al Gore, she “saw the candidates as pieces on God’s chessboard.” Later, she would declare her support for Barack Obama, but that period, writes Samaha, “turned out to be the final chapter of [their] political alignment.”

Meanwhile, she wondered where she’d gone wrong with me. Was it letting me go to public school instead of Catholic school? Subscribing to cable TV channels operated by the liberal media? Raising me in Northern California? She regretted not taking politics more seriously when I was younger. I’d grown up blinkered by American privilege, trained to ignore the dirty machinations securing my comforts. My mom had shed that luxury long ago.

She was a primary school student, living in a big house in the suburbs of Manila in 1972 when President Ferdinand Marcos declared martial law in response to a series of bombings across the capital and an assassination attempt on the defense secretary, which he blamed on communist insurgents. But Marcos had actually orchestrated the attacks as justification for his authoritarian turn — a plot exposed only years later. The successful conspiracy ushered the Philippines into a dictatorship that jailed dissidents, embezzled public funds, and installed a bribe-based bureaucracy my grandparents refused to participate in. Having a hard head runs in the family. To this day, my aunties and uncles debate if they would have been better off had their parents just given in to the new rules of the game.

The year my mom began falling down QAnon rabbit holes, I turned the age she was when she first arrived in the States. By then, I was no longer sure that America was worth the cost of her migration. When the real estate market collapsed under the weight of Wall Street speculation, she had to sell our house at a steep loss to avoid foreclosure and her budding career as a realtor evaporated. Her near–minimum wage jobs weren’t enough to cover her bills, so her credit card debts rose. She delayed retirement plans because she saw no path to breaking even anytime soon, though she was hopeful that a turnaround was on the horizon. Through the setbacks and detours, she drifted into the arms of the people and beliefs I held most responsible for her troubles.

In the early afternoon of Jan. 6, a piece of shrapnel landed in my text message inbox: photos of my mom and an uncle among a crowd of Trump supporters in front of the state capitol in Sacramento.

Outraged, I texted them both a righteous screed proclaiming my disappointment with how irresponsible they were, gathering with maskless faces even as COVID cases surged in California — and for what? It was one thing for my mother to risk her life at campaign rallies, but now she was doing so on the basis of a lie, a lie that only seemed to gain momentum. Would it ever end? Would my mother spend the rest of the pandemic bouncing from rally to rally, calling for an overthrow of a democratically elected government, breathing in the angry shouts of mask-averse white people who probably would’ve preferred she go back to the Philippines if not for the pink MAGA hat confirming her complicity?

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Stand By Your Dictator

Syrian President Bashar al-Assad (foreground L), his wife Asma visit the exhibition dedicated to French painter Claude Monet at the Grand Palais on December 11, 2010 in Paris at the end of their official visit in France. AFP PHOTO MIGUEL MEDINA (Photo credit should read MIGUEL MEDINA/AFP via Getty Images)

For some historical background on the war in Syria, read “The Graffiti Kids Who Sparked the Syrian War,” by Mark MacKinnon at The Globe and Mail.

Asma Assad, wife of Syrian dictator Bashar al-Assad, isn’t content to raise the kids while her husband oversees torture and violent attacks on his own citizens in a bid to squash a rebellion that has been ongoing for ten years. In this startling profile at 1843, Nicolas Pelham reveals that the London-born first lady of Syria has been ruthless in acquiring power, wealth, and influence at home with dubious “improvement” projects under a sham called the Syria Trust for Development, all while courting favor with the West, pretending to be someone other than a wife solely dedicated to her husband’s ongoing tyranny.

The UN gave up trying to count the war’s death toll in 2016, when it had already reached nearly half a million. More than 10m Syrians are refugees.

In the first year of the uprising she advertised for a gardener and spent £250,000 on furniture. To circumvent sanctions she sent her hairdresser shopping in Dubai and used an alias when ordering from Harrods.

As the war continued, Bashar became more ruthless. One Western diplomat recalls the slow escalation of violence – using artillery against civilians, then air raids, then barrel-bombs. “They would…use it once, there’d be an outcry, but not to the point of international intervention,” said the diplomat. “So they would roll it out, and that would become the new normal.” International condemnation of Bashar’s crimes grew, yet this incremental choking of Syria, rather than all-out attack, helped forestall intervention.

On August 21st 2013 new footage appeared, showing people in the rebel-held suburbs of Damascus with bubbles foaming at their noses and mouths, and their limbs jerking. Hundreds died. A UN investigation later confirmed that they had been killed by sarin, a nerve gas. It was the worst chemical-weapons attack anywhere since Saddam Hussein had gassed Kurds in Halabja in 1988.

The financial success and ruthless machinations have eroded Asma’s carefully cultivated image. “Some still love her, put her photo on their Instagram page. But most now perceive her as a sneaky greedy person,” said one Syrian businessman. These days, though, no one accuses Asma of failing to understand how Syria works.

Late last year residents of the Damascus neighbourhood where Asma lives noticed a surreal change in the landscape. An old statue depicting a lauded colonel was joined by a new one: a vast sculpture of a horse’s head, at the direction of Asma’s business associates. Locals complained about the extravagance. According to reports in Gulf newspapers, the authorities had the horse’s head removed. Hours later it was back. The message was clear: in post-war Syria, Asma calls the shots.

State media gives increasing air time to “the Lady of Jasmine”. Huge posters of her image have been spotted in her parents’ hometown of Homs, covering entire housing blocks. Uniquely for a Syrian First Lady, ministers have taken to displaying her portrait in their offices alongside Bashar’s.

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Don’t F**K With the Pet Detectives

Laura Breiling

This is an excerpt from The Atavist‘s issue no. 112, “Cat and Mouse,” by writer Phil Hoad. With dozens of felines turning up dead around London, a pair of pet detectives set out to prove it was the work of a serial killer.

Phil Hoad | The Atavist | February 2021 | 5 minutes (1,558 words)

 

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It was the body on the south London doorstep that got everyone’s attention. On the bright morning of September 23, 2015, a woman walked outside her home to find a cream-and-coffee-colored pelt, like a small furry Pierrot. It had dark forelegs, and its face was a smoky blot. It was a cat, slit throat to belly; its intestines were gone.

The woman rang the authorities, who came and disposed of the body. Three days later, she looked at a leaflet that had come through her mail slot, asking whether anyone had seen Ukiyo, a four-year-old ragdoll mix whose coat matched that of the dead cat. The woman broke the bad news to Ukiyo’s owner, Penny Beeson, who lived just down Dalmally Road, a nearly unbroken strip of poky, pebble-dashed row houses in the Addiscombe area of Croydon.

Beeson was inconsolable. “I shook for the whole day,” she later told The Independent.

“R.I.P ukiyo I feel devastated,” her son, Richard, posted on Facebook. “Hacked to death and left on someone’s doorstep. Some people are so sick!”

A few days later, Addiscombe’s letter boxes clacked again as another leaflet was delivered. This one warned that Ukiyo’s demise wasn’t an isolated incident—there had been a troubling spate of cat deaths in the area. The leaflet was printed by a local group called South Norwood Animal Rescue and Liberty, or SNARL.

Tony Jenkins, one of SNARL’s founders, had recently become his own master. At 51, with a reassuring, yeomanly face and a golden tinge at the very tip of his long, gray ponytail, Jenkins was laid off after 25 years working for a nearby government council. He hadn’t gotten along with his boss, so getting sacked came as something of a relief. With a year’s severance in his pocket, “I was enjoying my downtime,” Jenkins said. That included being with his girlfriend, a 44-year-old South African who went by the name Boudicca Rising, after the first-century Celtic warrior queen who fought the Romans to save the Britons. Among other things, Rising and Jenkins shared feelings of guardianship toward animals. Their homes at one point housed 34 cats, a dog, two gerbils, and a cockatoo between them. The couple had formed SNARL together.

Scanning Facebook one day in September 2015, about a week before Ukiyo was found dead, Jenkins stumbled upon a post from the nearby branch of the United Kingdom’s largest veterinarian chain, Vets4Pets, that described four gruesome local incidents in the past few weeks: a cat with its throat cut, one with a severed tail, another decapitated, and a fourth with a slashed stomach. Only the final cat had survived. Jenkins told Rising about the post. “That doesn’t sound right,” she said. “We need to do some digging.”

Digging was her forte. Always impeccably dressed, with an ornate gothic kick, and unfailingly in heels, Rising was a multitasking demon on a laptop. By day she worked for an office management company. By night she was part of the global alliance of animal rights activists. She was one of many people who used small details in online videos of a man torturing felines to identify the culprit, a Canadian man named Luka Magnotta. He was reported to police, who didn’t take the allegations seriously, and Magnotta went on to murder and chop up his lover in 2012—a crime recounted in the Netflix documentary Don’t F**k with Cats.

On the heels of Ukiyo’s death, Rising and Jenkins distributed SNARL’s leaflets throughout Addiscombe, warning of the threat to local felines. While to an uninterested eye some of the attacks might have appeared to be the indiscriminate cruelty of nature—the work of a hungry predator, say—SNARL believed they might be a series of linked and deliberate killings. Whether the crimes were perpetrated by an individual or a group SNARL wasn’t sure. It hoped the leaflets would help turn up more information.

SNARL soon had reports of more incidents in the area, for a total of seven: one cat missing, two with what SNARL subsequently described as “serious injuries,” and four dead. Rising said that vets who saw the deceased cats’ bodies told her the mutilations had been made with a knife. On September 29, SNARL sent out an alert on its Facebook page saying as much. The cats’ wounds, the group insisted, “could only have been inflicted by a human. Their bodies have been displayed in such a way as to cause maximum distress.”

That was SNARL’s official line. On Rising’s personal page she went further, emphasizing her belief that Addiscombe was dealing with a serial killer. “This is a psychopath,” she wrote.

While to an uninterested eye some of the attacks might have appeared to be the indiscriminate cruelty of nature, SNARL believed they might be a series of linked and deliberate killings.

On the afternoon of October 24, 2015, two miles southeast of Addiscombe, 47-year-old Wayne Bryant picked his way over the fallen leaves of Threehalfpenny Wood, named for a 19th-century murder victim found there with that sum of money in his pocket. The dry autumn air kept Bryant alert as his wide-spaced blue eyes scanned left and right and he listened to the wind hissing through the oak canopy. Bryant’s cat, Amber, like many domestic felines, kept regular hours with her comings and goings, but the previous day she hadn’t returned in the mid-afternoon as she usually did. When Amber didn’t show up the following morning, Bryant and his wife, Wendy, formed a search party.

A few years before, Bryant had suffered a serious spinal injury at work, causing a leak of cerebrospinal fluid and, eventually, several hematomas. Animals had always been a big part of his life—he and Wendy had a menagerie of rescue pets, from dogs to guinea pigs to lizards—but as he struggled with memory problems and long-term unemployment, the emotional support they provided became irreplaceable. Bryant had had Amber for eight years, since she was a six-week-old kitten. “A friendly little thing,” he told the website AnimalLogic. “A little curtain-climber.”

As they searched the woods, Bryant’s wife called to him. In a small clearing off a path, sheltered by a cluster of exposed tree roots, the ball of black and orange fur was unmistakable. But Amber was headless and tailless, except for that appendage’s very tip, which had been placed on her belly. The couple were sickened. They shrouded their beloved pet in a towel and took her home. Then Bryant remembered an article in the Croydon Advertiser about a group convinced that several recent cat killings were all connected.

A couple of hours later, Jenkins and Rising were at Bryant’s door. “I remember Wayne’s first words to me: ‘Ain’t no fox did that,’” Jenkins told me. “If I ever write a book about this, that’s what I’d call it.”

It was the first time either Jenkins or Rising had come face-to-face with a suspected cat killing. Neither of them had any forensics training. Unwrapping the towel that held Amber, they noted the clean severing of her head and tail, which seemed to corroborate Bryant’s view that no animal could be responsible. They asked the family to show them the crime scene. There was no blood on the ground, meaning that either her injuries were inflicted after death or Amber was killed elsewhere and moved to the spot in Threehalfpenny Wood where her owners found her. Rising and Jenkins took Amber’s body to a vet for further examination.

Bryant gave a statement to the police, and Rising went to the Royal Society for the Prevention of Cruelty to Animals (RSPCA), the UK’s main animal welfare charity. She later claimed that a representative brushed her off, saying that a fox probably killed Amber. Besides, the RSPCA dealt primarily with instances of cruelty in which the victims were still alive: It received more than 11,000 complaints a year in Greater London alone.

Jenkins was incredulous when he heard about the RSPCA’s response. “Although Croydon’s got a bad reputation, a lot of crime, I don’t think our foxes carry knives. And foxes certainly do not kill cats,” he said. At least, “it’s very, very rare.” He doubted that scavenging creatures would be interested in removing and eating feline heads and tails. Rather, they’d go for the nutritious internal organs, and SNARL hadn’t seen that kind of damage in any killing other than Ukiyo’s.

In October, there was another suspected cat killing in Croydon. Then SNARL began to get reports from farther afield, one in neighboring Mitcham and two in nearby West Norwood. Nick Jerome’s cat, Oscar, was found headless on his street. “None of us went to pieces over it, but it was obviously distressing at the time,” he said. In Coulsdon, on the southern edge of Croydon, David Emmerson discovered his cat, Missy, decapitated and tailless. His 18-year-old daughter, already struggling with the loss of her aunt the previous year, was devastated. Emmerson never told his autistic son the full story of what happened. The truth was too ugly. “I never grew up as a cat person,” he said, “but maybe because we got her as a kitten, she became one of us. Mine was the lap she chose to sit on when she sat down. I’m not sure why. I adored her.”

The RSPCA had its party line and wasn’t getting involved, but that didn’t stop the local press, which knew a good story when it heard one. By mid-November, reporters had made a lurid christening: The Croydon Cat Killer was on the prowl.

Read the full story at The Atavist

The Top 5 Longreads of the Week

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This week, we’re sharing stories from Leah Sottile, Elon Green, Lisa Whittington-Hill, Kate Morgan, and Virginia Morell.

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1. Did James Plymell Need to Die?

Leah Sottile | High Country News | March 1, 2021 | 26 minutes (6,500 words)

The toll of criminalizing homelessness in small cities and towns across the American West.

2. The Dissenter

Elon Green | The Appeal | March 2, 2021 | 37 minutes (9,288 words)

“Former Louisiana Supreme Court Chief Justice Bernette Johnson’s fiery dissents on mass incarceration and sentencing in America’s most carceral state garnered international attention. But the rise of the first Black woman on the court was characterized by one battle after another with the Deep South’s white power structure.”

3. OCD is Not a Joke

Lisa Whittington-Hill | The Walrus | March 1, 2021 | 12 minutes (3,114 words)

“People with obsessive-compulsive disorder are often depicted as Type A clean freaks. The reality is much worse.”

4. Once Upon a Tree

Kate Morgan | Sierra Magazine | Febuary 25, 2021 | 14 minutes (3,685 words)

“Before a disastrous blight, the American chestnut was a keystone species in eastern forests. Could genetic engineering help bring it back?”

5. The Dogs That Grew Wool and the People Who Love Them

Virginia Morell | Hakai Magazine | February 23, 2021 | 16 minutes (4,105 words)

“The dogs did more than provide fur. They were also part of village life: sometimes, a favorite wooly dog would keep a weaver company.”

The Dissenter

Longreads Pick

“Former Louisiana Supreme Court Chief Justice Bernette Johnson’s fiery dissents on mass incarceration and sentencing in America’s most carceral state garnered international attention. But the rise of the first Black woman on the court was characterized by one battle after another with the Deep South’s white power structure.”

Author: Elon Green
Source: The Appeal
Published: Mar 2, 2021
Length: 37 minutes (9,288 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. 


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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.”

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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

Congratulations, You Now Own a Newspaper

ALASKA, UNITED STATES - 1994/01/01: USA, Alaska, Inside Passage, Skagway, Main Street. (Photo by Wolfgang Kaehler/LightRocket via Getty Images)

At Columbia Journalism Review, Lauren Harris reports on the gritty determination of Melinda Munson and Gretchen Wehmhoff, a duo who became the owners of the Skagway News in a give-away. The pair, who are taking the paper into the modern age, are committed to making the publication a success — despite the effects of Covid-19 on a tourist town dependent on visiting cruise ships to survive.

IN 2019, LARRY PERSILY, owner of the Skagway News, announced that he would give away his local Alaskan publication to a person or a pair demonstrating journalistic skill, self-motivation, grit, and—above all—affectionate dedication to the quirks and quiddities of rural small-town reporting. National news outlets picked up the story as a sort of lark, emphasizing the remote and small-town nature of Skagway, the rarity of the giveaway, and then, in a few short lines, the challenges of sustaining critical local news coverage. In such stories, Persily was a Willy Wonka figure, courting a successor.

Among the applicants were Melinda Munson and Gretchen Wehmhoff, teachers in the Anchorage area who cowrote a blog for Alaskan families. Munson and Wehmhoff envisioned a dream job not unlike that conjured in headlines: the freedom to write and the promise of a place in a tight-knit community. Over the course of months, Munson and Wehmhoff had several intense phone interviews with Persily; for some, they met in a room in the school building with the lights off, to avoid drawing the attention of their principal.

Persily took over the paper’s management in 2019, working from Anchorage—a distance of nearly eight hundred miles from Skagway, which he quickly came to believe was too far.

“You gotta be part of the town,” Persily says. “You gotta go to the basketball games. You gotta be a trusted part of the community.” He discounted applicants who envisioned doing the job “for a couple years” or who wondered about how much they could contribute annually to an IRA. “Small-town papers need small-town editors,” he says. “I wanted an owner who was going to live there happily ever after.”

GRETCHEN WEHMHOFF AND MELINDA MUNSON make a winning pair. Wehmhoff is garrulous and lively; Munson is eloquent and tempered. Munson writes and edits, in addition to managing childcare and remote schooling for six kids; Wehmhoff does everything else. Each shows an obvious faith in the other’s capabilities.

“Gretchen is a Renaissance lady: she can do layout, ads, business,” Munson says. “When Gretchen writes, she spits it out on the paper, then hands it to me to edit.”

“I wipe up a little bit of the spit,” Wehmhoff responds.

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When Death Came to Mauritius

TOPSHOT - An aerial view taken in Mauritius on August 17, 2020, shows the MV Wakashio bulk carrier, belonging to a Japanese company but Panamanian-flagged, that had run aground and broke into two parts near Blue Bay Marine Park. (Photo by - / AFP) (Photo by -/AFP via Getty Images)

On July 25th, 2020, the container ship MV Wakashio ran aground off the coast of Mauritius, an area known for “some of the world’s clearest lagoons, most pristine ecosystems, (and) healthiest fish.” The ship eventually broke in two, spilling oil into Point D’Esnay, contaminating the coastline’s vegetation and sea life. As Ariel Saramandi recounts in this essay at Granta, when the government failed to act quickly, the citizens of Mauritius took action. The community made booms to soak up oil and protested against government indifference and inaction — despite the threat of being arrested for criticizing the authorities.

We have our superlative reputation to protect, after all: some of the world’s clearest lagoons, most pristine ecosystems, healthiest fish. Tourism is the heart of the economy. The majority of the island’s most opulent hotels are found on the east coast. Plus, the government is heavily invested in the fishing industry. Our fish exports are a 250-million-dollar business, and parastatal fish farms dot the south-eastern lagoon. We are confident that the Wakashio will be removed imminently from the reef: it’s in the government’s self-interest. We hear talk of international assistance and are reassured.

Meanwhile, images show filaments of an oily substance on the shore. Then images show the ship beginning to tilt. The Minister of Fisheries said the photos ‘appeared to be manipulated and deceptive.’ ‘The ship is not sinking and will not sink,’ he said on 5 August 2020.6 All is under control.

The next day thick black streaks coat our lagoon. Oil like lacquer on the water.

Against all international recommendations, despite our outcry and outrage, the government sank half of the Wakashio in great haste on 24 August. Two days later, melon-headed whales washed up around the south-eastern coast. Dead, mutilated, glossy bodies. Authorities haul them onto the back of pickup trucks, tails hanging out. Authorities cover them in white sheets. Videos of dying whales bobbing helpless in the ocean. Video of a mother whale trying to nudge her dying baby above the waves so that it can breathe; she watches as it dies, then dies a little while later, too. Fishermen say the ship was sunk in a whale breeding ground, that some of the corpses they found were of pregnant females.

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“People are dying waiting”

TORRENCE, CA - DECEMBER 29: Hospital doctors and nurses treat Covid-19 patients in a makeshift ICU wing on the West Oeste at Harbor UCLA Medical Center on Tuesday, Dec. 29, 2020 in Torrence, CA. The hospital has no open beds for incoming patients and have worked tirelessly to create additional beds for the influx of Covid-19 patients. (Dania Maxwell / Los Angeles Times via Getty Images)

At ProPublica, reporters David Armstrong and Marshall Allen tell the story of 53-year-old Miguel Fernandez, a Latino man from California who contracted the virus last fall. The center of a tight-knit, multigenerational family, Miguel fought for his life in hospital as his loved ones pushed to get him life-saving extracorporeal membrane oxygenation treatment — a specialized therapy that doctors are now in the horrific position of having to reserve for younger patients with the best chance of surviving, as critically ill COVID-19 patients overwhelm a healthcare system stretched far beyond usual limits.

But starting in early November, the daily number of COVID-19 hospitalizations surged in Los Angeles County, rising eightfold between then and the wave’s crest, which arrived just after New Year’s Day. Within weeks, overflowing hospitals faced exactly the types of care-rationing decisions experts had feared. Hospitals set up tents to increase capacity, and ambulances circled for hours as they waited for beds to open. By early January, Los Angeles County emergency medical personnel were directed to conserve supplemental oxygen by only administering it to the neediest patients, and to stop transporting to hospitals cardiac arrest patients who couldn’t be revived in the field. State officials dispatched refrigerated trucks and thousands of body bags to the region.

Miguel didn’t want to go to the hospital. He knew people like him were dying. Latino Angelenos have suffered the highest COVID-19 death rate in Los Angeles County — almost twice the rate of Blacks and about three times the rate for whites.

The separation was especially difficult for Alejandrina, who had been married to Miguel since 1991. Miguel liked to tease her when she watched her Mexican telenovelas: Why do you watch those shows when you have me? On Mother’s Day earlier in the year, Miguel had surprised her by buying a pair of rings, getting down on one knee and proposing again. The couple made plans to renew their vows on their 30th wedding anniversary this summer. When he became sick with COVID-19, Miguel assured Alejandrina he would get better so they could get married again. She promised she would wait for him.

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Taking Your Butt to a Higher Level

Getty Images

A decade ago, a BBL (Brazilian Butt Lift) was a relatively rare occurrence, but in her piece for The Guardian, Sophie Elmhirst discovers that since 2015 the number of butt lifts performed globally has grown by a whopping 77.7%. Kim Kardashian can take a big chunk of the credit for this, as the proud owner of the most famous bottom in the world, “a bottom so scrutinized, so emulated, so monetized, that it no longer feels like a body part, but its own high-concept venture, its own startup turned major IPO.” However, no one knows how long the fashion for a bottom that resembles “a bauble wrapped in skin” will last, or what will happen when it ends. While it remains in vogue, there are many women willing to run the gauntlet of having fat strategically molded into their rear ends — and some have paid for it with their life.

A patient has to wait weeks before they know what their bottom will ultimately look like. The fat takes time to settle, and Glancey has to remind her patients that at best, only about 50% of the fat “takes”. The rest is absorbed by the body and ejected through the lymphatic system. To optimise the amount of fat that survives in the body requires a surgeon’s skill. Glancey compares it to creating a garden: you can’t put plants too close together, they need space to thrive. “When I say this to patients, they just say put more in,” she said. “And I say, well, it doesn’t work like that.” Glancey sticks to the UK guidelines and limits how much she will insert – 300cc per buttock, a little less than a can of Coke. She tells her patients to complete the BBL over more than one operation, adding a little at a time.

In Turkey, the most popular destination for cosmetic surgery patients travelling abroad in Europe – and the third most popular in the world, after Thailand and Mexico – the limits are less conservative. Some surgeons openly advertise on social media that they will insert more than 1,000cc into a patient’s buttocks. Glancey says that she regularly sees patients who have returned from Turkey unhappy with the results, often because a significant quantity of fat has died and left them lopsided or misshapen.

The risk involved in performing a BBL is not only about the quantity of fat, but how it is inserted. (Also, whether it is fat being inserted at all: a number of recent deaths associated with buttock augmentation occurred because the patient was being injected with silicone.) During the operation, the danger occurs at a very precise moment: the insertion of the cannula into the buttock. As it goes under the skin, the cannula has to remain above the gluteal muscle. If it goes below, and fat enters the bloodstream, fat droplets can then coalesce, travel through the blood and cause a pulmonary embolism, a blood clot in the lungs – the cause of death in the case of the British woman, Leah Cambridge, who had a BBL at a private clinic in Izmir in 2018.

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