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White Looks

Getty / Illustration by Homestead Studio

Soraya Roberts | Longreads | August 2019 |  8 minutes (2,132 words)

 

They have a deep emotional investment in the myth of “sameness,” even as their actions reflect the primacy of whiteness as a sign informing who they are and how they think.

—bell hooks, Black Looks (1992)

 

I’m experiencing some deep angst about this essay. That anxious feeling where you’re standing on the edge of a cliff on a perfect day — no wind, no sound, no bird of prey — and you’re almost certain you’ll throw yourself off. Every time I email a black critic for this article, it’s even worse because I can’t even tell if I’ve jumped or not. Like I’m dead at the bottom of that cliff, but I have to wait for a reply to be informed. That I’m dead. This is what white people call “white fragility,” right? “Socialized into a deeply internalized sense of superiority that we either are unaware of or can never admit to ourselves, we become highly fragile in conversations about race,” Robin DiAngelo wrote. (As book critic Katy Waldman noted, many people of color could have written White Fragility in their sleep.) I am in fact biracial — my father is white, my mother is Pakistani (she grew up in England) — but I pass. I barely identify with my Pakistani side, except when I see a group of Pakistani people. Then I’m like Hey. I know you. (Even though I don’t.) I don’t think this when I see a group of black people. Although, what’s that line in Ibram X. Kendi’s How to Be an Antiracist? “To be an antiracist is to realize there is no such thing as Black behavior.” To be an antiracist is to realize there is such a thing as White behavior.
Read more…

Editor’s Roundtable: Antidotes to Loneliness (Podcast)

Neil Young. (Dave J Hogan/Getty Images )

On our August 23, 2019 roundtable episode of the Longreads Podcast, Audience Editor Catherine Cusick, Longreads Head of Fact-Checking Matt Giles, and Senior Editor Kelly Stout share what they’ve been reading and nominate stories for the Weekly Top 5 Longreads.

This week, the editors discuss stories in The New York Times Magazine, The Atlantic, and a collaboration between Texas Monthly and The Texas Tribune.


Subscribe and listen now everywhere you get your podcasts.


3:20 Neil Young’s Lonely Quest to Save Music.” (David Samuels, August 20, 2019, The New York Times Magazine)

16:58 “The Quickening. ” (Leslie Jamison, September 2019, The Atlantic)

28:45 How the Unchecked Power of Judges Is Hurting Poor Texans.” (Neena Satija, August 19, 2019, Texas Monthly and The Texas Tribune)

* * *

Produced by Longreads and Charts & Leisure.

The Top 5 Longreads of the Week

Venus Williams. (Jordan Mansfield / Getty Images for LTA)

This week, we’re sharing stories from Elizabeth Weil, Neena Satija, Dan McDougall, Leslie Jamison, and Amos Barshad.

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

‘Victims Become This Object of Fascination… This Silent Symbol.’

Dessert, c 1923, by Frederick G Tutton. (The Royal Photographic Society Collection/Victoria and Albert Museum, London/Getty Images)

Jonny Auping | Longreads | August 2019 | 14 minutes (3,848 words)

 

While reading Rachel Monroe’s Savage Appetites, there will probably be a point when you’ll think to yourself, “This person is obsessed.” You might be referring to any one of the book’s real life characters who took their obsession with violence to its most illogical extreme. You might actually be referring to Monroe herself, who doesn’t shy away from the notion that she might still have been digging deeply into these stories of bloodshed even if there were never a book to tell them through. Or, you might realize that you planned to sit down and read for only 20 minutes, but it’s been over an hour and you can’t tear yourself away.

Questions about the nature of obsession permeate Savage Appetites, which tells the stories of four women whose connections to violent crimes — either as investigator, killer, defender, or victim — became the obsessive center of their universes. Monroe, whose stories have been featured at places like The New Yorker, The Atlantic, and Texas Monthly, also weaves in personal experiences and historical context in order to take a macro-view of the true crime genre. What are the causes of our obsession with violent crime and, perhaps more importantly, what are the political and sociological consequences of it? Read more…

Better Late

CSA Images / Getty

Summer Block | Longreads | August 2019 | 11 minutes (3,179 words)

 
Here I am again, the only 40-year-old in the orthodontist’s waiting room. Dr. F works out of a strip mall in North Hollywood which, like every other business in North Hollywood, is across the street from an acting studio and a transmission repair center. In the waiting room a sullen teenage girl is frowning at her phone while her little brother drums the back of his heels against his seat. Four receptionists sit behind the front desk, each wearing perfect teeth and an embroidered lab coat, pointedly ignoring the drumming. Three large high-definition TVs are always on, and always playing Moana — but only the sad parts.

I have a significant overbite and a large gap between my two front teeth. As a child I wanted braces the way some girls want a pony. I was poisonously envious of all my friends’ braces, obsessed with the arcane magic of it: the little flat packets of wax, the seashell pink boxes of tiny rubber bands. Because my parents could not afford braces, I stopped smiling instead. In the last photo I’ve found of myself with teeth visible, I am 7 years old, posing beside my baby sister in a pale purple Laura Ashley dress, grinning a gummy, snaggled smile. In every photo since, my lips are tightly sealed, like a baby refusing a spoon. I’m not smiling in my senior pictures, nor at my college graduation, nor on my wedding day.

For years I planned on fixing my teeth when I could afford it, but by the time I finally could, I felt it was too late. I feared correcting an orthodontic mess as bad as mine would change the shape of my face. Would I still look like me when it was through? Did I want to? More than that, I couldn’t imagine living without constant low-level embarrassment about my teeth, like the roar of silence in a room after someone turns off the TV. I was used to my teeth. In some ways, I even liked them, in the way that all of us secretly treasure even the worst facts about ourselves just because they’re ours. Still I daydreamed about braces sometimes, about looking back at all my childhood photos and finding me in them now, smiling.

* * *

I didn’t learn to swim until I was a teenager. I didn’t learn to drive until I was 24. I didn’t learn to ride a bike until I was 37 and I got into graduate school 18 years after I finished my BA. I didn’t have my period until I was 17; I was still losing baby teeth in junior high. I didn’t drink until I was in college, and didn’t do drugs until after I’d left. I got my first tattoo at 30. I rode a water slide for the first time last summer; I played baseball for the first time last month. I didn’t find my first friend until I was in fifth grade, and I found my true love when I was almost 40.

* * *

At my first Invisalign consultation, I offered up an eager, toothy grin. The hygienist took my photo, printed it out, and stapled a copy to my chart, so whenever I return for checkups, I see it there. My hair is thin and friable, the color of damp straw, my neck ropy and straining. I look like an emu.

At my initial consultation, I explained to Dr. F that I was hoping to fix the large gap between my front teeth. Dr. F assured me brightly that the gap was just one of many, many things wrong with my teeth. A series of 3-D images and X-rays revealed that I had both a significant overbite and a crossbite, the latter responsible for the slight visible asymmetry of my chin. I had a major gap between my two front teeth, of course, but the spacing of my teeth was uneven throughout, crowded on the bottom and rangy on top. Several of my teeth were twisted, most uneven, and I had a chip in my front left. My front teeth were too big, or my gums too small — the effect was very horsey either way. 

I sat through this litany of my many imperfections, my face set in a tight, conciliatory grin.

“Your gums show too much when you smile,” he said.

My teeth were supposed to be done last July, but I’m still waiting. Forty-year-old teeth are stubborn.

I was made to sign a stack of waivers and disclaimers acknowledging what Invisalign could and could not do for my teeth. Invisalign is a purely cosmetic fix, not a structural one. Invisalign can shuffle your teeth within your jaw like Scrabble tiles in their tray, but it cannot change the alignment of your jaw itself. Traditional metal braces would go further to fix some of the issues with my teeth, if I chose them, but they are more effective on adolescents whose bones are still malleable. My bones had spent 39 years solidifying into their present shape. At this point I’d need major jaw surgery to correct my overbite, Dr. F explained, and even then it wouldn’t change the size and shape of my palate.

“I thought there were palate expanders and things, I remember when I was a kid —”

“Oh yes,” Dr. F interrupted cheerfully, “you can fix absolutely anything when you’re young.”

* * *

My father has held many different jobs in his life, from taxi driver to short-order cook, shipping clerk, retail salesman, janitor. When he met my mom he was working at a factory that made drapes. Eventually he fell into being a purchasing agent and he worked for various manufacturing companies until, at age 63, his employer outsourced all their manufacturing overseas and pushed him into early retirement. But he couldn’t really afford to retire, and so he went to work as a substitute teacher. It was simply expedient, at first, but he loved being a teacher and he was good at it. Kids loved him, fellow teachers loved him, parents loved him. He went back to school to get his teaching credential to become a full-time elementary school teacher. He was the happiest I’d ever seen him. At 63, after a lifetime of jobs that were simply jobs, he had found his calling.

I tell this story all the time — because I’m proud of my father, but also because it comforts the listener, and it comforts me. I usually sum it up with some pat sentiment like, “It just goes to show, you really can do anything at any age!” 

* * *

When my children were with their dad, Zac and I would stay downtown in the industrial conversion loft he shared with three roommates and a cat he loved like a baby because he’d never had a baby. The building was a hulking concrete and brick shell choked with vines, its interior walls thrown together by the many resident architecture students. We’d order pizza and go sit up on the roof, where his neighbors gathered on summer nights for concerts and parties, or just to look out over the rooftops of the city and feel good about Los Angeles. 

Then we’d climb down a ladder through the ceiling to his bedroom, a concrete cube only a few inches wider than his bed. His clothes hung from an exposed metal rack, and a small air conditioning unit was mounted unsteadily into the small window above our heads. The room was dark and cool — freezing in winter — and cars rolled over the 4th Street bridge all day and night.  

* * *

Invisalign is a system of clear plastic aligners, each a mold of your teeth, that you wear at all times except when eating. Every Sunday night I put in a new set of aligners, top and bottom, one slight correction closer to perfection. Every two months I return to Dr. F’s office to pick up my next set of eight aligners, each in its own resealable plastic bag. My treatment plan was supposed to take 18 months, or 78 little plastic bags.

This is my 48th week of Invisalign and the gap between my two front teeth is definitely closing. When I’m wearing the retainers, the space almost disappears, and I get a little preview of what I’ll look like when I’m done. I am still, for better or worse, recognizably me.

* * *

The truth about my dad is somewhat more complicated. He does love teaching, and he is great at it. But he’s 70 now, still taking night classes, still attending training workshops, still working with a mentor. He works the equivalent of three full-time jobs. He is subject to age discrimination in hiring, to exhaustion and chest pains and second-guessing. Not to mention the decades he spent doing things he didn’t love until he found, belatedly, the thing he did. 

* * *

It didn’t occur to me that Invisalign would hurt, perhaps because they were just flimsy plastic sleeves and not metal braces. The day I had them put in, Dr. F filed down some of my teeth and cemented anchoring brackets onto others, without any anesthesia. My jaw ached from holding my mouth open for so long. Then there was the actual movement of the teeth themselves, a part of me that hadn’t moved since infancy now subjected to a sudden geologic violence.

When I got back to our house after my first appointment, I was starving but it hurt too much to eat. Zac took a bite of a Snickers bar, chewed it up, and spat it into my mouth.


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Zac had three children but no babies. He was 29 and I was 37. He said that with or without babies, he’d still choose me. I said he might change his mind. We went on a 14-mile hike and we argued about it the entire way, 7 miles up and 7 miles down. 

The night of the company Christmas party, I made a joke about how we’d probably never have kids, and he went outside crying. I caught up to him in front of a tequila-themed sports bar whose patrons were sloshing off the patio and we fought while people all around us shouted at the TVs. We were blocking the valet line, him still crying and me begging him to come back inside, while the black-jacketed valets carried on indifferentl around us, edging SUVs right up to the backs of our knees. At last we made it into our Lyft and we spoke to our bedroom ceiling until the room lightened into dawn.

* * *

The last time I spoke to my dad on the phone, he was thinking of going back to manufacturing. There are a lot of temporary jobs in Reno now, he said, and he has the experience. He loves his students and the work he does, but the administrative wrangling is wearing him out. He got his certification through a program called ARL, or Alternative Route to Licensure, and now it turns out some routes are better than others.

* * *

Today, Moana was bidding her dying grandmother farewell, on mute, while Dr. F frowned over my incisors. There was a gap between the tooth and the aligner that would necessitate new X-rays, new scans, and everything starting all over again.

My teeth ache a little now all the time, under a steady and unrelenting pressure just this side of ignorable. The aligners force a pinched, disapproving expression that ages me 10 years. Then there’s the business of taking them out for every snack, every drink, every meal, and keeping them clean. Nothing makes you feel more like an old lady than slipping your teeth out of your mouth, except perhaps leaving them to soak in blue liquid in a bowl on the bathroom counter.

With all the extra brushing and flossing I do now, I have plenty of time to inspect my teeth. Before all of my ire was directed toward that one gap, but now that it’s improving, I’ve started really looking at all the other problems with my teeth, the problems Invisalign can’t fix. My front teeth are too long and my incisors too pointy. My teeth are too yellow. When I smile my eyes scrunch up too much and my sharp nose points like an arrow directing attention toward my asymmetric chin.

Still, I’ve been smiling more often, though tentatively, and not in a way I would exactly describe as natural. I wonder if I’ll ever be able to smile as effortlessly as people who’ve had four more decades of practice. At times I doubt whether Invisalign has done anything much at all. Are they like Dumbo’s feather, simply giving me the confidence to bare the teeth I might have bared all along? I suppose that might be considered an uplifting ending, but then Dumbo’s feather didn’t cost him $3,000.

* * *

We did everything at once. There wasn’t time or space to date casually, get serious, move in, calm down, get married and then have a baby. The first years we had so much living to do: moving once and then moving again, getting a pet, burying a pet, having sex until 2 in the morning and waking at 6 to pack the lunches, the ovulation test kits and love letters and the fractious night driving, the family vacation where all three children vomited in the car. Sometimes I think it’s easier to have young children in the early days of a relationship, when the fresh intensity of your attachment can mitigate all the stress and exhaustion. When the house is asleep I put my head on his chest and he sings to me, his low voice sounding far but not distant.

‘Oh yes,’ Dr. F interrupted cheerfully, ‘you can fix absolutely anything when you’re young.’

Strangers constantly stop us on the street to tell us we look so happy, excuse me, but they’ve just never seen such a happy couple before. 

The night we moved in together, into a three-bedroom rental house in Burbank, I cried because I wished I could have done all of it with him the first time. I sat on a hard-backed chair in the living room because we didn’t have a sofa yet. Zac moved in with only his books, his computer, and clothes. I had taken only a fraction of my things with me in the divorce, but still I had so much stuff: potted plants and a slow cooker, a sugar bowl from my old wedding registry, a box labeled “kids’ artwork,” plastic tubs of Christmas ornaments, and a 3-foot-tall wooden dollhouse.

That night Zac wandered into the empty living room in the middle of brushing his teeth. Through foam, he said, “I missed you.”

* * *

We got married at 3 in the afternoon on a warm day in June, 89 degrees and unusually humid for Los Angeles. I had ordered a dress for the occasion, pale blue tumbled with sprays of little red roses, but by the time it arrived I’d already grown too big to wear it, so about an hour before the ceremony I pulled on an old jersey dress with gray and white stripes that stretched over my pregnant belly like a dizzying optical illusion. My sister and her boyfriend flew down from Reno to be our witnesses.

Zac wanted a proper wedding, but I wasn’t sure. “I already had a wedding.”

“But I didn’t.”

We drove to the Los Angeles County Registrar’s office in Van Nuys. The office looked like a DMV, with linoleum floors and snaking lines of people clutching forms in their sweaty hands. The walls were painted avocado and lemon meringue, the colors of appetizers in a 1950s cookbook. A sign read “Birth, Marriage, Death” with an arrow pointing down the hall.

The couple in line ahead of us brought along a group of relatives, all dressed up and holding armloads of flowers. They went into the chapel for about 15 minutes and emerged looking excited. 

When it was our turn, we went in to find the justice of the peace, a short, energetic woman with dark brown curls wearing thick glasses and a black robe. She stood in front of a heart-shaped metal arch swathed in pale green tulle and fake flowers; on the wall behind her, little puff balls of orange, white, and yellow tulle hung from what appeared to be a giant coat hanger. The only other furniture in the room was a small table, covered in a white tablecloth and decorated with a vase of plastic flowers, and an empty office trash can. 

The wedding chapel was in a side room with its own door, but the partition wall stopped about two feet from the ceiling, so we could still hear the grumbles of the people on the other side, requesting certified copies of their birth certificate.

The justice of the peace asked if we had prepared any vows. We answered no and she politely carried on, as though she’d accidentally raised a sensitive topic and was now trying to tactfully change the subject. She asked if we had any rings to exchange. We said no again, and she made a comment about how we didn’t need rings — our real gift was the baby-to-be.

She asked us to hold hands and gaze into each other’s eyes, something we both found acutely embarrassing. She declared us man and wife. My sister took pictures and then we all went to Disneyland.

* * *

Our baby is named Margaret Héloïse. She was born on September 21 when I was 39 years old. September 21 is the start of a new season, but it’s a late season, too.

* * *

If you want to really surprise someone, try proposing to them a month after you’ve gotten married. We went out to dinner and Zac gave me his great-grandmother’s ring.

This summer we will have our second wedding. In the course of one year I will have gotten married, gotten engaged, had a baby, turned 40, and then gotten married again. Beatrice, 10 years old, has named herself a “junior bridesmaid,” a concept she read about in a bridal magazine. Five-year-old William will be the ring bearer, and we’ve dubbed Margaret the Baby of Honor. Arthur, 8, wants to pull her down the aisle in a wagon covered in flowers. 

My teeth were supposed to be done last July, but I’m still waiting. Forty-year-old teeth are stubborn. Each time I go in I tell Dr. F they’re good enough, but Dr. F is a perfectionist. The space between my two front teeth, the one that started all this, looks OK to me, but my crowded bottom teeth resist rearrangement. 

I’ve started printing out photos of me and Zac together, smiling. They’re mostly selfies, mostly not very good ones. Neither of us likes to have our picture taken, and it shows. But here’s one of us smiling in front of redwood trees, one at the beach. Some from his old apartment, one trick or treating with the kids. There’s one of us smiling at the Los Angeles County Registrar’s office, one at Disneyland, and a picture of me with Margaret, a few minutes old, wet against my chest — and I’m grinning wildly, artlessly, showing all my teeth.

* * *

Summer Block has written short fiction, poetry, and essays for The Awl, Catapult, The Toast, The Rumpus, and Electric Lit. She is writing a book about Halloween.

Editor: Cheri Lucas Rowlands

Can Tech Become Ethical, If It Learns to Be Mindful First?

Nano Calvo/VWPics via AP Images

No matter how recent advances many tech companies have made for humanity, they have also wreaked havoc on our world, from screen addiction to social fragmentation to a depressing sense of isolation. Conflicted tech workers are starting to face the fact that Big Tech hasn’t simply bettered the world, and some are seeking spirituality, psychedelics, meditation, and mindfulness to reconcile this with their traditional notions of success. For The New Yorker, Andrew Marantz examines what he calls “Silicon Valley’s Crisis of Conscience.” Silicon Valley has earned our skepticism, and it’s tempting to dismiss this soul-seeking as PR or another passing trend, like open offices or those little fold-up commuter bikes. “But ultimately if a handful of people have this much power,” asks Esalen institute’s past C.E.O. Ben Tauber, “then, isn’t that worth a shot?” Maybe. So what’s this all look like?

Near the end of a placid April morning in San Francisco, a nonprofit called the Center for Humane Technology convened more than three hundred people in a midsized amphitheatre named SFJAZZ—co-founders of Pinterest and Craigslist and Apple, vice-presidents at Google and Facebook, several prominent venture capitalists, and many people whose job titles were “storyteller” or “human-experience engineer.” One attendee was Aden Van Noppen, who carried a notebook with a decal that read, “Move Purposefully and Fix Things.” She worked on tech policy in Barack Obama’s White House, then did a fellowship at Harvard Divinity School, and now runs Mobius, a Bay Area organization dedicated to “putting our well-being at the center of technology.” “The Valley right now is like a patient who’s just received a grave diagnosis,” she said. “There’s a type of person who reacts to that by staying in deflect-and-deny mode—‘How do we prevent anyone from knowing we’re sick?’ Then, there’s the type who wants to treat the symptoms, quickly and superficially, in the hope that the illness just goes away on its own. And there’s a third group, that wants to find a cure.” The audience at SFJAZZ comprised the third group—the concerned citizens of Silicon Valley.

Before the presentation, Van Noppen hosted a breakfast for a few members of the audience, including Justin Rosenstein, a former Facebook employee and a co-inventor of the Like button, and Chris Messina, a former Google employee and the inventor of the hashtag. Messina wore a polo shirt, revealing a tattoo on each arm: a hashtag on the right, a Burning Man logo on the left. “It’s not nearly widespread enough yet,” he said, of the industry’s capacity for self-critique. “But even to get a group of people together like this and publicly acknowledge the depth of the problem? That would have been impossible a few years ago.”

“A few months ago,” Rosenstein said.

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‘The Survivor’s Edit’: Bassey Ikpi on Memory, Truth, and Living with Bipolar II

Space Frontiers/Hulton Archive/Getty Images

Naomi Elias | Longreads | August 2019 | 24 minutes (6,573 words)

 

Bassey Ikpi remembers the Challenger explosion; she can recall the exact moment it happened, in 1984. She can remember, in exquisitely painful detail, how she felt watching that tragic accident unfold on live television, in 1984. Yet Google and the history books tell us it happened in 1986. “What is truth,” Ikpi asks, “if it’s not the place where reality and memory meet?”

The blurry line between emotional truth and fact is stylishly captured in an optical illusion of a book cover (designed by Matthew McNerney) for Ikpi’s new memoir-in-essays, I’m Telling The Truth But I’m Lying. The Nigerian-American author takes up the project of remembering, with great dexterity and compassion for herself. Ikpi opens up about living with bipolar II; “Imagine you don’t fit anywhere,” Ikpi writes, “not even in your own head.” We experience her life pre- and post-diagnosis; her adolescence in Stillwater, Oklahoma; her early twenties touring as a spoken word artist with HBO’s Def Poetry Jam; her sleepless nights; and her hospitalization.The latter proves to be a turning point, one that finally gives her a name for her mental illness and — as the book demonstrates — a framework for understanding the story of her life.

The diagnosis is clarifying; it allows her to see how mental health impacts her relationships to her family and friends, and to herself, often determining what she feels and remembers, and how she remembers it. In this way Ikpi also uses her book to interrogate the nature of memory itself — how fragile it is, how it can be colored and recolored by trauma and guilt and self-preservational drive. “I learned how to take the truth and bend it like light through a prism,” Ikpi explains in the book, “I learned to lie beautifully.” Rather than present readers with a sanitized cluster of biographical data, Ikpi offers a memoir that places the reader inside her mind, conflict and all. Read more…

The Little Book That Lost Its Author

Oliver Killig/picture-alliance/dpa/AP Images

Amber Caron | Boulevard | Spring 2019 | 16 minutes (3,262 words)

 

In Roald Dahl’s 1953 short story, “The Great Automatic Grammatizator,” Adolph Knipe, the story’s protagonist, invents a computer that can provide the answer to a math problem in five seconds. His invention is a technical masterpiece, and his boss sends him on a weeklong vacation to celebrate his good work. Knipe, however, doesn’t travel and doesn’t even celebrate. Instead, he takes a bus back to his two-room apartment, pours himself a glass of whiskey, and sits down in front of his typewriter to reread the beginning of his most recent short story: “The night was dark and stormy, the wind whistled in the trees, the rain poured down like cats and dogs.” It’s not a promising beginning, and Knipe knows it. He feels defeated, nothing more than a failed writer, when he’s suddenly “struck by a powerful but simple little truth, and it was this: That English grammar is governed by rules that are almost mathematical in their strictness!” His fate isn’t to write stories, he realizes, but to build a machine that can write stories for him. Read more…

Looking for Carolina Maria de Jesus

Illustration by Bex Glendining

Tarisai Ngangura | Longreads | August 2019 | 18 minutes (4,506 words)

Here in the favela, almost everyone has a difficult life to live. But I am the only one who writes of what suffering is. I do this for the good of the others.

 Carolina Maria de Jesus, Quarto de Despejo

* * *

In 1960, at the age of 46, Carolina Maria de Jesus published her first book, Quarto de Despejo: Diário de uma Favelada (Child of the Dark in English). It’s comprised of diary entries written on scraps of paper and assembled into a memoir about life in Canindé, a favela community in the Brazilian city of São Paulo. The book sold more than 10,000 copies in less than a week, was eventually translated into 16 languages, and distributed in 46 countries, making Carolina Maria one of Brazil’s most widely read authors. And for a while, the most famous person in the country. 

Starting in the late 1800s, the very first favelas, known as bairros-africanos, were inhabited by formerly enslaved people. Today, the country’s Institute of Geography and Statistics calls them “sub-normal clusters.” Favelas lack basic sanitation, electricity, and health facilities and are located primarily in city centers. After Quarto de Despejo’s instant success, Carolina Maria became a fleeting cause célèbre for the rights of favelados.

Carolina Maria de Jesus was born in the state of Minas Gerais, about 500 miles north of Rio de Janeiro, and came into the world some time between 1914 and 1921. Like many Afro-Brazilians born during this time, she didn’t have a birth certificate. She grew up with her mother, grandfather, younger brother, and later her stepfather in the town of Sacramento, where most homes were small and functional, to guard from rain and sun. Her father was a street performer who abandoned the family soon after Carolina Maria was born. Her mother cleaned houses and washed clothes for white families who lived on farms bordering the city. She died when Carolina Maria was in her early twenties.

After her mother’s death, Carolina Maria moved around trying to find her footing before settling in metropolitan São Paulo. She also made a living cleaning homes for wealthy white Brazilians, but after becoming pregnant, she was barred from the house she worked at and forced to move to a favela. She chose the neighborhood of Canindé for its proximity to a junkyard, where she sold bags of collected paper and scrap iron for pennies. Black people who were lighter skinned were referred to as morenas and morenos and had a greater measure of respect and access to more jobs, better restaurants, libraries, and social mobility. Carolina Maria, a dark-skinned black woman, was an outsider in more ways than one.

After the surprise success of Quarto de Despejo, she traveled across Brazil’s states, signing books and giving public talks on the dire conditions of favelas. The press called her a rags-to-riches heroine: the one who had been born surrounded by garbage and yet became a writer. Carolina Maria became a reluctant (and ultimately unwilling) spokesperson for “bootstrap success” — her image vaunted to encourage others to let nothing keep them from their dreams. Not crippling debt or inaccessible education. Definitely not hunger, and most importantly, not racism. In the years after Carolina Maria’s debut, nine more books followed; six were published after her death in 1977. But the renown that came from her first frank writings on poverty wouldn’t be repeated.  


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In the afterlife of the global slave trade and colonialism, black history is a study of spaces, silences, question marks, and asterisks. Growing up in Zimbabwe in the early 2000s, I learned of colonialism as if it had been a momentary blip in my country’s history, not a profound interrupting occurrence whose effects would forever shape how I moved and saw the world. When I left home for university in Toronto, I learned of Canada’s history as a celebrated haven for runaway slaves, but did not hear of Africville, a historically black community in Nova Scotia destroyed by provincial and federal negligence. I noticed the same kind of erasure when I arrived in Brazil’s city of Salvador, the capital of Bahia state, which I’d chosen to make my home base as I started my career in freelance journalism in 2016.

Of the nearly 5 million Africans brought to the country during the transatlantic slave trade (10 times more than brought to North America), the first landed in Salvador, one of the oldest slave ports in the Americas. It’s where the Malê revolt erupted, which Brazilian historian João José Reis called “the most significant slave revolt in Brazil.” Brazil has more African descendants than any other country in the world except Nigeria — almost 51 percent of the nation’s population is black or mixed race. On a national scale, Salvador is the state capital with the highest number of Afro-Brazilians, with more than 80 percent of its people identifying as black or brown. The cadence and speech of Soteropolitanos (residents of Salvador) is audibly tinged with Bantu vocal patterns, and the moda (fashion) would not be out of place in pattern-rich Senegal. Local food is stamped with unmistakable West African flavors and beloved street snacks include acarajé, a deep-fried black bean bun that is also found in Nigeria and Ghana. Dende oil, an extract from the fruit of oil palms that leaves distinct orange marks on clothing, is an integral part of every meal and was also brought over from Africa’s West. 

Carolina Maria, a dark-skinned black woman, was an outsider in more ways than one.

In the months following my arrival, I searched for writers to guide me through Brazil. Yet the authors I discovered online and on bookshelves did not reflect the faces I saw around me. When I refined my search, specifically noting ‘Afro-Brazilian’ in my digital prompt, I learned about Maria Firmina dos Reis, a prominent abolitionist and teacher; Abdias Do Nascimento, the pan-Africanist, playwright, and founder of Teatro Experimental do Negro (TEN); and Alzira Rufino, an activist and the first Afro-Brazilian woman to create a support service for female survivors of domestic violence. These writers exposed truths about their country’s treatment of black people, countering the myth of Brazil’s diverse, racial democracy. I also found Carolina Maria de Jesus, whose story was not only compelling, but was also to some degree a reflection of my own. I saw familiar breaks and patterns in her thoughts, dreams, doubts, and disappointments. 

Haunted by questions centuries older than her years, Carolina Maria constantly found equilibrium to be out of reach, even when it seemed as though she had finally achieved what she longed for. She landed at a crossroads so common to the “successful” black creative: a rapid abundance of opportunities contingent on total acquiescence, or nothing at all. She achieved renown for a season, then fell into obscurity and back, further still, into near poverty.  

It’s been more than 40 years since her death, and I wonder if anything has truly changed for black women anywhere who long for their art to be what takes care of them.

* * *

In 1962, The New York Times Book Review called Quarto de Despejo “a rarely matched essay on the meaning and feeling of hunger, degradation and want.” Carolina Maria’s debut pulled no punches and displayed no illusions about life in the favela. There was no long-suffering acceptance of martyrdom because a better life lay above. She’d hated where she lived, and even more so she hated those who allowed such places to exist. Quarto de Despejo literally translates to “room of garbage.” She wrote about culpability — whose fault was it that some people had to live among the garbage? Sometimes she blamed the people themselves, who, according to her, were lazy, drunk, vulgar, and illiterate. “I know very well there are contemptible people here, persons with perverted souls,” she wrote. This earned her no love from progressives, who found her sentiments self-righteous and demeaning to the poor. When she didn’t find fault with those around her, she chalked it up to sheer bad luck: “Is there no end to this bitterness of life? I think that when I was born I was marked by fate to go hungry.” More often, her mind would circle back to one answer — politicians. “When a politician tells us in his speeches that he is on the side of the people, that he is only in politics in order to improve our living conditions, he is well aware that touching on these grave problems, he will win at the polls,” she wrote. “Afterwards he divorces himself from the people. He looks at them with half-closed eyes, and with a pride that hurts us.” This was an entry she wrote on May 20th, 1955, a day she found herself particularly hungry and contemplating her place in a world where she was an “object banished to the garbage dump.”

 The 1950s were, on the surface, an auspicious time for Brazil. Under the presidency of Juscelino Kubitschek de Oliveira (like Carolina Maria, a mineiro, born in the state of Minas Gerais), the country’s economic and political stability grew. Edson Arantes do Nascimento, soon to be known as Pelé, became an international soccer star. Bossa nova was born and on its way to becoming one of the country’s most distinctive musical innovations, with Johnny Alf’s “Eu e a Brisa” drifting in and out of bars across the country. For Carolina Maria, none of this mattered. The police regularly intimidated, arrested, and detained favela dwellers. Corruption was rampant at social services, and social elevation was only possible if she married a white man and had lighter-skinned children. All this she wrote in her diaries, sharing her confusion, disgust, and anger. In her eyes, to be poor and hungry was an undeserved burden for anyone, and it was a national shame she cast a glaring light on.

* * *

Carolina Maria had three children, and her only daughter, Vera Eunice Lima de Jesus, born in 1953, is the writer’s closest living relative. As the public face of her mother’s literary works, Vera Eunice speaks at roundtable discussions where the work is featured, but she doesn’t own the rights to any of it. 

Vera Eunice also accommodates writers like me, who come to her for answers about her mother’s life of contrasts. It’s been more than half a century since she lived in Canindé, and while some memories elude her, others she recalls as though they happened yesterday. She told me she’d barely turned 7 when fame came knocking at their barraco. Made of pieces of discarded timber and asbestos, it was stuffed with bits of plastic and paper to act as both insulation and ventilation. Carolina Maria had built it herself. During the summer months, it was unbearably hot inside the cramped home, with the asbestos emitting heat all day. São Paulo is also known for its torrential rainfall, so when it poured the roof would leak, drenching their two mattresses. In that small shack Vera Eunice lived a life stifled by scarcity. “We would eat once a day. My oldest brother was a teenager and he was always hungry,” she said. 

These writers exposed truths about their country’s treatment of black people, countering the myth of Brazil’s diverse, racial democracy.

Like her mother’s writing style, Vera Eunice spoke to me in a direct, almost dry way — her voice strong and measured. “One day, my mother and I went out to look for food. We were passing this house and a white woman came running out and said she had a gift for us. My mother was so happy because we had not been able to find anything,” she said. “The gift was wrapped in newspapers so we rushed home and my mother quickly tore it open to see what it was. It was a pile of rats.” Carolina Maria had recounted this particular interaction in her diaries; it was a moment that scarred both mother and daughter. For the writer, particularly, this interaction showed that to outsiders she didn’t simply live amidst garbage, she too was disposable.

Audálio Dantas, a young journalist working for the newspaper Diário da Noite, spent a week in Canindé in 1958. He was researching life in the favela for what he hoped would be a story on the recently built playground donated by a politician soliciting votes from the poor. As the legend goes, he came across Carolina Maria threatening to put some neighbors in her diaries if they didn’t stop mistreating a group of children who were having fun on the swings. Intrigued, Dantas asked to see some of her work. He took a couple of her entries to his editor, and soon after, excerpts were published in the paper to great fanfare. Dantas later became bureau chief of O Cruzeiro, the leading weekly magazine from Rio de Janeiro. Although the newspaper exposure led to a book deal for Carolina Maria, it also attracted a barrage of harassment and a backlash that was unceasing.  

After the book came out, rumors began to circulate of Carolina Maria’s difficult disposition. Her politics during the book’s press tour failed to garner any favor when listeners realized that what she had written about sexism, political corruption, and poverty was not mournful musings, but rather her true convictions. She found it necessary to call out racial prejudice and in a country whose social stability and national identity was built on the idea of colorblindness through race mixing, her words were seen as not only inflammatory, but also blatantly false. When the novelty of a published black favelada wore off, the press coverage grew harsh; critics from well-known papers resorted to tabloid-like spitefulness. A writer from the paper O Globo called her “uncouth.” A literary critic from the largest newspaper in the country, Folha de São Paulo, found her work after Quarto De Despejo to be “pastiche,” and a later article would run in that same paper with the headline, “Carolina: Victim or Crazy?”

In the publishing industry, some writers are allowed to be all the messy parts of themselves, even when their behaviors and beliefs border on violent. The perceived strength of their work assures them a mythical cachet that leaves them faultless. This free pass was not given to Carolina Maria. She was not allowed to be mercurial and received little empathy. Some literary critics and political pundits questioned her competence, and she was forced to prove her legitimacy for the duration of her career. Those who want to protect her legacy face a similar interrogation. “Look, my mother wrote everything herself. We slept in the same bed and every night I would hear her get up to write,” Vera Eunice told me. “If we had no lights she would use candles and continue writing.” In 2012, Audálio Dantas talked about the events leading up to the publication of the first entries, which became the book Quarto de Despejo. “I had not written a single line. The story was in those books,” he said.

When her first press tour came to an end, Carolina Maria wanted to step away from diaries, to write novels, poetry, and to be taken seriously as an author. Her publishers, however, wanted her to keep doing what had amazed before. She refused, and for a while, she stuck to her guns, because for the first time she had the privilege to say no. Money had come in, and four months after Quarto de Despejo debuted, Carolina Maria and her children were able to leave the favela for the middle-class neighborhood of Santana, a 30-minute train ride from Canindé. 

* * *

To support Quarto de Despejo, Carolina Maria traveled so often and so extensively that airport workers would hug her at the arrival terminal. “Every day cards come from international editors who want to translate the book. Even I am astonished at the impact,” she wrote. She was happy, almost forcefully so. The kind of joy that’s laced with fear and doubt but is also desperately hopeful.

After settling down in Santana, Carolina Maria set about creating a haven for herself and her small family. In Canindé they’d lived without electricity, relying on candles when she could afford to buy them. In her new home, she put in 14 light fixtures. She bought shoes for Vera Eunice, who had always hated walking barefoot, and her two boys, João José and José Carlos stopped acting out. “I used to think João was rude. But now that we have food in the house he has transformed,” she wrote in Casa de Alvenaria, her second book, also a diary published just under a year after the release of Quarto de Despejo. “He has left rude João to be nice João. Hunger really makes people neurótico.” Memory of life prior to the book was still very clear and so too was the relief and gratitude for her new beginnings. As in Canindé, she still woke up before the sun, but now there was no hand-wringing as she worried about what she would feed her children. In Santana, when João José, José Carlos, and Vera Eunice woke up, they had breakfast with bread and their tea with milk and sugar. Once the children left for school, she would begin preparations for lunch, then dinner. She didn’t have to beg from people’s homes anymore or dig through the garbage, fearful of eating something dosed with poison by store owners attempting to dissuade favelados from searching for food. Carolina Maria could now go out to the butcher and choose any cut of meat that she wanted. She bought fresh fruit and vegetables from the market. “My life is now velvet. Now I have food. I have a house. I have things to wear,” she wrote. 

When the novelty of a published black favelada wore off, the press coverage grew harsh; critics from well-known papers resorted to tabloid-like spitefulness.

Carolina Maria could have chosen to write only the good things that came her way when she left the favela, but in Casa de Alvenaria, she wrote about her new life as bluntly as she had about her old one. She saw just how inflexible the middle-class reality was to her presence. The white maid she had hired constantly made it known that she believed their roles should be reversed, and Carolina Maria made note of her complaints: “My God in the sky. This is the end of the world. God is punishing me. The world has capsized. I, a white person, have a black boss.” Her new neighbors treated her with contempt and saw her presence as an eyesore. “I am sad and not content because when something happens here, everyone always blames my children,” she wrote. Outside of her problems at home, she also had trouble opening a bank account because she didn’t have the proper ID. She opened a joint account with Dantas, who was now not only her editor but also her agent. She had money, but anti-blackness does not dissolve with improved social status. It stings differently, but is noticeable all the same. 

While many critics saw Casa de Alvenaria as the inconsequential ramblings of someone with no direction, it was here I saw Carolina Maria most clearly. She was painfully aware of what both the press and her peers thought and said about her, so she attempted to tread the tightrope carefully. She knew people were watching and wilfully betting on her failure, so she wanted to write without risking the welfare of her children. “I am not crazy about this idea of writing my diary based off my actual life now. I am writing against the rich. They are powerful and they can destroy me,” she agonized. 

Her first book had kicked up the reactionary dust of white guilt, and she tried to settle what her words had stirred up, while making it known that her success did not end social inequality. Carolina Maria had written her second book while caring for her three children, showing up to book signings, pleasing her agent and publisher, and trying to maintain her own sense of self. She was exhausted. “Due to the success of my book I am now regarded as a bill of exchange. A representation of profit. A gold mine,” she wrote in Casa de Alvenaria. The freedom money should have purchased now felt like a cruel joke, and her feelings of despair culminated in one of the saddest thoughts present in her known works: “Looking at the sky, if I had wings I would lift my children up there, one at a time, and never again return to the earth.” She had few friends and those who came to see her would ask for money, which she usually gave. Carolina Maria had done what we’ve all been told needs to be done to be a good citizen, to be happy and fulfilled, far away from hardship: She had worked hard. And now here she was, uncomfortable in her own brick house. 

* * *

Carolina Maria de Jesus passed away in 1977 in Parelheiros, three hours from Santana and Canindé. She had moved there almost a decade earlier, after she could no longer afford to live in Santana. It was a poor, rural neighborhood on the periphery of São Paulo, known for its heavy pollution. She died from respiratory complications, exacerbated by the industrial waste sites surrounding her home.

When memorializing her life, the writer of her obituary in Jornal do Brasil called her vassoura de papel — a paper scavenger. This was in reference to her work collecting scrap paper and iron, which she’d had to start again after she moved. She’d kept writing and financed the three books published before her death with the royalties from her first book. But she died poor. Not like how she started, but not how she should have been. Carolina Maria had signed a financially crippling contract and she saw very little of the money received from the international licensing of her books. 

‘Looking at the sky, if I had wings I would lift my children up there, one at a time, and never again return to the earth.’

For Tom Farias, author of Carolina: Uma Biografia, a book on the writer released in 2017, Carolina Maria deserves to be highlighted in the same Brazilian canon as Jorge Amado, Clarice Lispector, and Paulo Coelho. “She was more than just her diaries, she wrote plays, songs, and poetry. She was an artist,” he said.

Since her death, she has been often acknowledged during Novembro Negro — Brazil’s Black History Month, when the achievements of living and dead Afro-Brazilian leaders are brought center stage. But on a day-to-day basis, it’s mostly other black women who have kept her memory alive. In Salvador, Denise Ribeiro taught a popular class at Universidade do Estado Da Bahia (UNEB) on the social relevance of Quarto de Despejo in 2008. A health and nutrition professor and former coordinator for the Municipal Health Secretariat of Salvador, she’s spent more than three decades studying health from a myriad of perspectives, with a focus on black feminism, traditional communities, and African spirituality. In her home, the names of well-known Afro-Brazilian women authors lined the spines of her library: Fatima Oliveira, Djamila Ribeiro, and Conceição Evaristo, alongside other voices from the diaspora such as Toni Morrison, Angela Davis, Alice Walker, Audre Lorde, and Chimamanda Ngozi Adichie. Carolina Maria was a fitting addition among the company of black women whose work forced the world to center blackness, even when it seemed inconceivable. “Carolina Maria had such a hard life and so much happened to her in that time,” Ribeiro told me. “Because I teach health, her book was so relevant to the things that affect the way black people live, and the reality is that her life is the life of so many people today. Nothing has changed at all.” 

Not that long ago, in March 2018, Marielle Franco, a queer Afro-Brazilian city councillor from Rio de Janeiro, was assassinated in her car just hours after speaking at an event for black women’s empowerment. Franco was born in Complexo da Maré, a Rio neighborhood made up of 16 favelas. It’s considered one of the largest communities in the city with almost 150,000 residents. In 2017 and 2018, more than 40 young people, the majority of them black and under 24, were killed during police raids in Maré, which happen frequently. In May of this year, eight people were left dead after another police operation in the area, which forced children to search for cover so they wouldn’t be struck by bullets. Access to electricity remains a problem with many using what’s locally known as gato, or cat. This device, made up of manually inserted wires, is attached to city electrical supplies and it diverts energy toward the overlooked favelas. Six years ago, the monetary amount of the diverted electricity came to $500 million in U.S. dollars. Prone to explosions, gatos are dangerous creations, but for many families, it is too expensive to get onto the formal electrical grid. Carolina Maria faced the same dilemma while living in Canindé during the 1950s.

* * *

Stories of black women creators whose work shook the world but who died underappreciated never cease to raise in me a familiar madness and a self-contained rage. It’s a hollow pain and a fear that hovers over my own hopes and dreams. But there is also a separate, wild appreciation for the existence of things deemed impossible. It is utter madness that Carolina Maria was able to write books at all, and it is madness that she made it enough for a girl from Zimbabwe to one day discover her work and see herself. In Carolina Maria’s writings, I saw a life that was lived even when living felt more like fighting.

During my last conversation with Vera Eunice she asked me to help her petition for a Carolina Maria de Jesus archive in the southern city of Curitiba. She also wanted my help collecting original print photographs of her mother because she has none. Most are in the hands of Dantas’s grandchildren. “Dantas took a lot of pictures of my mother,” she said. “Before he died we had been negotiating about his giving them to me, and now it’s even harder.” When I reached out to the Dantas estate to ask about the photographs of Carolina Maria, his executor did not offer a response.

In one of the most recognizable shots I found of Carolina Maria online, she is looking directly at the camera, head slightly tilted to the side. Her black skin, deep and smooth, her hair under a loosely tied headwrap. She spent most of her life unseen, living in shadows, and even when the light came, it didn’t brighten as much it blinded. She was the mirror, and what she reflected about her world was so startling it took time to properly process what she had released. When the noise died down, her unexpected work became an appalling reminder of a reality many would have rather just forgotten. In this picture, it’s as if she knew that she would not have many opportunities to really be seen, so she made it count. She looks determined, a little sad, a little proud. She was still, and for a moment she forced us to be still. Without anyone expecting it, a woman from the favela wrote a book that read an entire nation.

 

* * *

Tarisai Ngangura is a journalist and photographer. She documents black lives around the globe — their histories, legacies and movements. Her work has appeared in Rolling Stone, Jezebel, The New York Times, The Globe and Mail, New York Magazine, Hazlitt, VICE and Catapult.

Editor: Danielle A. Jackson

Copy editor: Jacob Z. Gross

Fact checker: Samantha Schuyler

On Representations of Disability: A Reading List

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Around the age of 3 or 4, Harriet McBryde Johnson sits in front of her family’s television set and thinks, “I will die.” The thought comes to her after an advertisement for the Muscular Dystrophy Association flashes across the screen, one that depicts a small boy’s journey from running bases as a baseball player to using a wheelchair and then to bed, one he never rises from. Born with a neuromuscular disease, this commercial, and then a telethon around the age of 5, are Johnson’s first encounters with depictions of disability in mainstream media, as she writes in her memoir Too Late To Die Young. From that first scene, the line I will die, I will die, I will die, serves as a sort of chorus, one that punctuates Johnson’s progression from kindergarten student to law school graduate to protestor and beyond. Johnson reclaims the line; as she moves through life, I will die is no longer a source of fear, but rather a lyric of defiance.

The negative representations of disability Johnson encounters in childhood do not leave her in adulthood, particularly in relation to her wheelchair. She protests against entities like Jerry Lewis, who claims, in a letter penned for Parade Magazine, that wheelchairs are a form of “steel imprisonment,” a “dystrophic child’s plight.” When, being photographed for The New York Times Magazine, the photographer asks to remove Johnson’s chair from the frame, saying that Johnson looks “frail.” The photographer argues that Johnson will look “beautiful and powerful out of the chair,” “brave,” but Johnson advocates for herself.

Johnson’s memoir reveals a litany of ableist assumptions directed toward her and other disabled people, as well as the emotional and physical tolls these perpetual violences take on her throughout her life. Harmful messages, distributed through television ads, telethons, looks others give her while she’s out, snide comments, the highly inaccessible way our world is physically built, seep so much into her consciousness that at one point, she sees wheelchair dancing as being “undignified.” It takes her years before she reckons with her own beliefs, questioning whether they are borne from what others have told her about her disability or about what she herself has experienced in her body. Then, she explains the joy that comes from moving through the world in her wheelchair, saying, “we can in our own way play with sight and sound, combine rhythm and form, move in our chairs and with our chairs, and glide and spin in ways walking people can’t.”

Though Johnson’s life experiences are unique to her, the underlying themes within her book resonate far beyond. I saw myself reflected in some of her passages, particularly when I thought back to my own experience using a wheelchair for a few months as a result of neurological symptoms, during which time I felt a sense of shame. Johnson’s reckoning with her own internalized ableism helped me realize that my feelings came not from my use of the wheelchair, which allowed me to move through the world, often with great joy, but from how I thought others might perceive me.

Her memoir, too, encouraged me to ask questions: How does pervasive ableism affect the way our society continues to be architected? In what ways have disabled people been represented in media and how can representation continue to evolve so that disabled people have more agency? How are invisible disabilities treated versus visible? What have other disabled people’s experiences been engaging with different accessible tools and technology? The essays curated here cover an array of topics related to those questions, as well as delve into intersections between disability and race, class, and gender.

1. Common Cyborg (Jillian Weise, September 24, 2018, Granta)

Jillian Weise writes against Donna Haraway’s ‘A Cyborg Manifesto,’ exposing numerous flaws in Haraway’s argument, namely, the fact that Haraway neglects to acknowledge disabled people. Weise discusses what it means to claim a cyborg identity, and how disability is treated by a group of people she names ‘tryborgs,’ who “preach cyborg nature,” but “do not actually depend on machines to breathe, stay alive, talk, walk, hear or hold a magazine.”

They like us best with bionic arms and legs. They like us deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture and consider ourselves cured.

2. What It’s Like to Be a Disabled Model in the Fashion Industry (Keah Brown, September 5, 2018, Teen Vogue)

In this essential reported piece, Keah Brown, author of recently published The Pretty One, interviews three models with disabilities — Chelsea Werner, Jillian Mercado, and Mama Cax — and draws on her own experiences with cerebral palsy to emphasize the need for increased representation of diverse bodies in advertising, media, and modeling.

Disabled people and disabled models are still left out of most campaign ads and runway shows. This lack of representation has implications: When you go so long without seeing yourself it is easy to interpret that lack of representation to mean you’re ugly and unworthy, that you deserve to be invisible or even worse, are grotesque.

3. How Designers Are Failing People With Disabilities (Justin Rorlich, March 6, 2014, Hazlitt)

With estimates that there are 1.3 billion disabled people in the world who control more than $8 trillion in disposable income, you’d think there would be competition within the wheelchair market to create products with sleeker, more efficient design. But no, as Justin Rohrlich exposes in this piece, hardly any work is being done within big corporations to advance wheelchair design. Instead, individuals like Andrew Slorance are taking matters into their own hands.

In no other market do we force people to simply take whatever product gets shoved down their throats, especially one of this size,’ Donovan says. ‘It’s really sort of unbelievable.

You’d think that companies would have figured out long ago how to sell to a cohort this size. For some reason, it remains barely-touched.

4. The Complicated Dynamics of Disability and Desire (Lachrista Greco, April 6, 2016, Bitch)

After a teacher in middle school tells Lachrista Greco she’s using her invisible disability as a “crutch,” Lachrista begins to make a connection between her disability and how wanted she feels in relation to others. In examining harmful cultural moments like Kylie Jenner modeling with a wheelchair, essays by other disabled writers, and personal memories, Lachrista explores how disability is connected to desirability, both in her life, and in our culture as a whole.

Jenner appeared on the cover of the magazine sitting in a brass-colored wheelchair—sexy, glamorous, and blank. It’s fetishization to the nth degree for Jenner, an able-bodied person, to pose in a wheelchair wearing a black latex bodysuit. It’s “crip drag,” as comedian and disability rights activist Caitlin Wood calls it.

5. The Amputee Cyclist’s Art of Self-Repair (C.S. Giscombe, May 23, 2019, The New York Times)

After seeing a banner that reads “Do you remember when prosthetics weren’t mind controlled?” while on a bike ride through the U.C. campus, C.S. Giscombe reflects on his own prosthetic; ruminates on intersections of race, class, and disability; and confronts ableism.

He was amazed — as some people are, ‘because of your handicap’ — that I was riding at all, and as we talked and climbed the topic of touring came up and he was quick to inform me that it was a thing sadly beyond my capabilities, though we had just met. ‘Typically, disability is viewed as a tragedy,’ as my friend the poet Jennifer Bartlett has observed.

6. Products mocked as “lazy” or “useless” are often important tools for people with disabilities (s.e. smith, September 20, 2018, Vox)

After seeing a device called a Sock Slider ridiculed on John Oliver’s Last Week Tonight, s.e. smith compiles a list of other tools mocked on the internet: “banana slicers, egg separators, jar openers, buttoners, tilting jugs for dispensing liquids, and much more.” In interviewing people with disabilities, disability scholars, and compiling research about costs of attendants, smith not only makes clear that the use of these gadgets enable some disabled people to live independently, but also examines the role of the internet in spreading harmful messages.

When content mocking the disability community — like memes about ambulatory wheelchair users getting up to grab something high at the store — spread like wildfire, commentary from the affected community is rarely attached. This has a dehumanizing tendency, creating a world that rewards judgmental, snappy commentary and eliminates nuance.

7. I Love ‘Queer Eye.’ I Don’t Love The Way It Portrayed People With Disabilities. (Jessica Slice, July 26, 2019, Huffington Post)

Representations of people with visible disabilities on television are far and few between, so when the Fab Five of ‘Queer Eye’ featured Wesley, “a Black man, loving father, 30-year old community activist and wheelchair user” on an episode, Jessica Slice had hopes that the team would empower Wesley to embrace his identity as a disabled man in the same way they encourage others featured on the show. Instead, the episode falls short in many ways, which Slice chronicles in this well-researched piece.

Critically, being disabled is not a negative. It’s an identity, just like being queer, Black or Latinx is an identity. If it makes you pause to hear ‘Black, but not really,’ or ‘gay, but not really,’ then you should have the same reaction to ‘disabled, but not really.’

8. (Don’t) Fear the Feeding Tube (Kayla Whaley, May 8, 2018, Catapult)

When her mom brings up the idea of a feeding tube, Kayla Whaley recoils. She feels shame and fear thinking about such a concrete change being made to her body until she speaks with others who have gone through the surgery. This essay, in addition to providing a history of gastronomy tubes, also chronicles Kayla’s emotional turn from revulsion to delight in relation to her g-tube, and the ways in which her feeding tube allows her to connect with her body in new and surprising ways.

More than that, knowing what was inside felt like sharing a secret with myself. Seeing inside my gut, learning to recognize its patterns and moods, felt intimate in a way that was wholly unexpected but altogether a joy.

***

Jacqueline Alnes is working on a memoir about running and neurological illness. Her essays have been published in The New York Times, Guernica, Tin House, and elsewhere. You can find her on Instagram and Twitter @jacquelinealnes.