Search Results for: Time

The Rich Versus the Very, Very Rich

Longreads Pick

“When a Chinese billionaire bought one of Britain’s most prestigious golf clubs in 2015, dentists and estate agents were confronted with the unsentimental force of globalized capital.”

Source: The Guardian
Published: Mar 2, 2021
Length: 22 minutes (5,700 words)

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)

 

The Atavist is Longreads‘ sister publication. For 10 years, it has been a digital pioneer in long-form narrative journalism, publishing one deeply reported, elegantly designed story each month. Support The Atavist by becoming a magazine member.

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

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

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

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

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

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

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

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

Who’s in the mood for romance now?

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

Read the essay

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 Joy of a Pointless Walk

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

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

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

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

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It’s Been One Year Since Students Started Widespread Distance Learning

Longreads Pick

“Someday, there again will be high school proms, science fairs in the gym, and nighttime football games packed with students bathed under white lights. But who will be forgotten and left further behind?”

Source: 5280 Magazine
Published: Mar 1, 2021
Length: 14 minutes (3,559 words)

Why Mother Maybelle Carter’s Work Was Never Done

Country singer songwriters The Carter Family (Maybelle Carter on Guitar, Helen Carter on accordion, Ernie Newton on Bass with dancers June Carter Cash and Anita Carter) on stage at the Grand Ole Opry in 1951 in Nashville, Tennessee. (Photo by Bob Grannis/Getty Images)

In rural America in the early part of last century, women who did full-time labor to keep households and farms running while raising children were considered unemployed unless they earned a wage. Country music pioneer Mother Maybellle Carter often did double duty, laboring at home by day, raising children, and playing shows at night for years. When she and her daughters formed a singing group called “Mother Maybelle and the Carter Sisters,” Maybelle took the girls on the road, sometimes playing two shows a day, six days a week, washing and pressing clothes and preparing the girls to sing and play on stage. Her double duties — which never really ended for the duration of her life —  included looking after Johnny Cash and helping him overcome addiction. At NPR, Jessica Wilkerson examines the many labors of Mother Maybelle and the women of her time.

The success of the Carter Family band also hinged on women’s labor. Maybelle may have abandoned wage work in the mills that attracted a generation of Appalachian girls, but she did not give up on the idea of earning a living. Modern working women, Maybelle and Sara blazed a new path in popular music and flouted gender conventions as front women in a band, with Sara on lead vocals and Maybelle lead guitar, unheard of at the time. But that path wasn’t always easy or glamorous.

Mother Maybelle and the Carter Sisters “were a self-contained road show,” doing all the work to set up a live show, without staff. Maybelle sewed many of the matching dresses the girls wore, pressed them before showtime and did the girls’ hair. June Carter Cash recalled, “We never went onstage with a wrinkle or uncurled hair.”

When you listen to Maybelle play the guitar, you can hear a lifetime and more of labor. It’s the work of her mother passing down the songs that accompanied mountain women as they weeded the garden or rocked a baby to sleep. It’s the work of Sara and Maybelle stealing moments to create music, of the mill girls working at a warping machine in the new textile factories, the life that Maybelle escaped. It’s the work of A.P. Carter and Lesley Riddle collecting songs, and Maybelle catching the songs in her fingers, recreating them for new audiences. Those songs provided moments of respite, too, for people who flocked to concerts or tuned in on the radio after hours of work on a farm or in the coal mines. The Carter Family worked so that people could relax. We can hear the work of soothing the weary, through gospel songs that promised better days ahead and old ballads that reassured listeners that they were not the first to suffer. Maybelle’s melodies supported her family, providing them a comfortable life when few women could say the same. Maybelle Carter chased the music and worked herself to the bone to give the world country music. And when those melodies were no longer as valuable, she patched together other kinds of work to make ends meet, because that’s what people like her do.

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 Dogs That Grew Wool and the People Who Love Them

Longreads Pick

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

Source: Hakai Magazine
Published: Feb 23, 2021
Length: 16 minutes (4,105 words)

The Top 5 Longreads of the Week

This photo taken on June 4, 2019 shows a facility believed to be a re-education camp where mostly Muslim ethnic minorities are detained, north of Akto in China's northwestern Xinjiang region. - As many as one million ethnic Uighurs and other mostly Muslim minorities are believed to be held in a network of internment camps in Xinjiang, but China has not given any figures and describes the facilities as "vocational education centres" aimed at steering people away from extremism. (Photo by GREG BAKER / AFP) / TO GO WITH AFP STORY CHINA-XINJIANG-MEDIA-RIGHTS-PRESS,FOCUS BY EVA XIAO (Photo credit: GREG BAKER/AFP via Getty Images)

This week, we’re sharing stories from Ben Mauk and Matt Huynh, Katie Engelhart, Devon O’Neil, Ariel Saramandi, and Tananarive Due.

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1. Inside Xinjiang’s Prison State

Ben Mauk, Matt Huynh | The New Yorker | February 26, 2021 | 28 minutes (7,000 words)

“Survivors of China’s campaign of persecution reveal the scope of the devastation.”

2. ‘We Are Going to Keep You Safe, Even if It Kills Your Spirit’

Katie Engelhart | The New York Times | Februaary 19, 2021 | 15 minutes (3,794 words)

“For the millions of Americans living with dementia, every day during this pandemic can bring a fresh horror.”

3. The Final Descent of Dean Cummings

Devon O’Neil | Outside | February 22, 2021 | 44 minutes (11,327 words)

“‘This isn’t a tale of savagery,’ said former H2O lead guide turned Cummings nemesis Will Spilo. ‘This is a tale of mental illness.'”

4. Death Takes the Lagoon

Ariel Saramandi | Granta | Febuary 8, 2021 | 16 minutes (4,066 words)

“Ariel Saramandi on the sinking of the MV Wakashio off the coast of Mauritius.”

5. “Dr. Lecter, My Name Is Clarice Starling”

Tananarive Due | Vanity Fair | February 23, 2021 | 19 minutes (4,811 words)

“The movie is so scary because it seeps into people’s consciousness through fears. It really works on fear more than anything else.”