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Cabin Fever: A Reading List for the Perpetually Isolated

Sad child in isolation at home
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By Kara Devlin 

It was only a few weeks ago that I found out cabin fever — the restlessness, irritability, and loneliness that a person feels when confined to one place for too long — was a genuine, medical term and not just a casual way of joking about isolation. I was on a hypochondriac mission, tasked with discovering exactly why I felt so completely out of my mind after only one week in COVID-positive solitude. When I searched my anxieties and fears, dozens of incredibly validating affirmations popped up: You are not alone; your symptoms are real; you can get better. I had never taken being alone that seriously. It was a common, unavoidable condition of being alive, so why would I? 

My discovery that cabin fever was a recognized ailment encouraged me to see isolation in a new way. The severity of the condition was now obvious. As a kid, one day inside had been enough to send me climbing the walls, searching for anything to do. What I didn’t realize as I grew older was that isolation crept into my brain in a much quieter way. Loneliness, shame, unhappiness, and impatience replaced the agitation and boredom I had grown up with. The more I read, the more I realize how universal, yet unique, this feeling is. Why does being alone make us feel this way? 

Technology doesn’t help. Most of us can have all our wants and needs met from the comfort of our rooms — food delivered, friends found in anonymous chatrooms, entertainment discovered on endless streaming services. Technology, ironically, has brought freedoms to confinement. We could spend our entire lives within one small space if we chose to, as the economy molds to serve our desires. The lazy day watching Netflix, the guilt-laden Uber Eats order, even the bold Instagram message, have all emerged around a generation spending more time by itself than any before.

Of course, isolation is not just found through a physical landscape. The most harrowing form of loneliness can occur in a crowded room. Edward Hopper famously explored the loneliness of living in the big city through paintings likeNighthawks.” This ubiquitous depiction of urban isolation, a diner with no entrance and no exit, serves as a memorable illustration of loneliness. When you are inside of this feeling — the metaphorical diner if you will — there is no perceived beginning or end, and no consideration from those around you, as nothing exists beyond this world-swallowing experience.

During the pandemic, isolation transformed from a misfortunate occurrence to something so widespread it was impossible to avoid. Like most people, I spent weeks and weeks inside my house, with no contact with anyone except the members of my household. All aspects of isolation hit at once and were impossible to escape. I realized how easy it would be to continue living like this — perpetually isolated.

I wasn’t the only one who had this idea. The switch to working from home brought the overlapping isolations of technology and the pandemic together. However, this change was not an unavoidable curse cast upon working society: Only three percent want to fully return to the office now that we are able to. Solitude is not just wrought upon us; oftentimes, we choose it. The desire to be left alone by the bothers of the social world often overpowers the negative experience that isolation implies. 

I am drawn to the idea that reading can connect the isolated — that one story on loneliness can link together hundreds of confined minds to think, Maybe I’m not alone. The stories on this list do not just seek to analyze and dissect the effects of isolation; they serve as a powerful tool of connection.

***

The Hikikomori couldn’t go outside for years. Then Covid-19 trapped them again (Ann Babe, Wired, March 2021)

Ann Babe has written a number of pieces on the solitary experience of different Korean groups, including a powerful article on the isolation of Korean adoptees in America which looks into solitude as an inherent feature of minority identity.

Like many other people, the coronavirus lockdown was my first taste of prolonged isolation. It was a complete change from my regular lifestyle. But what was it like for those who were already isolated — people who had spent years of their lives locked in their rooms, having already chosen a lifestyle of reclusiveness? This describes the hikikomori, a unique subset of people, largely in Asia, who can live decades in almost complete isolation.

South Korean-based journalist Anne Babe thoughtfully explores the experience of these people during the pandemic. She sensitively lays out multiple, personal hikikomori narratives, displaying their anxieties, reservations, and fears, all without judgment. The effects of COVID on these people ran just as deep, despite the misguided thought that they should be used to it. Babe takes us into their worlds, reminding us that there’s not so much difference between us and them. 

Reflecting on the pandemic, Kim makes a comparison. “Someone who’s been living in the cold climate for a long period of time, like I have, is able to continue on in the cold weather,” he says. “But if that person is from a hot place, they will find it hard to adapt to the suddenly freezing climate. I would say I’m numb to the coronavirus situation because I am so used to being secluded in my room. But I wouldn’t say I’m completely indifferent to it, because I’ve experienced, briefly, the warmth of being part of society.”

The Future of Loneliness (Olivia Laing, The Guardian, April 2015)

Olivia Laing is also the author of The Lonely City, an enlightening book that pulls together personal narrative and art analysis to develop a beautiful understanding of loneliness.

As a Gen Zer, technology is an integral part of my life. It’s how I keep up with work, understand the daily happenings of the world, and, most importantly, how I talk to every single person I know. This reliance on social media for connection has potentially worrying effects, as Olivia Laing argues in her illustration of concerns for strictly virtual bonds. 

Written in 2015, Laing’s fascinating piece points out what we should have realized by then — that the internet is not the perfect tool for connection, that is just an illusion. We may believe it allows us to be seen while simultaneously supporting a level of privacy, but neither can truly be achieved. You will never be viewed for who you really are, just as you will never be concealed from prying eyes. Years later, her predicted anxieties have turned into daily reality. It is normal for every app to gather mountains of data on you, every mistake to result in a permanent “canceling,” and every relationship to spend at least half its time connecting through social media. Laing discovers the true nature of the online world and maintains tension to the last word as we discover more and more truths about our online activity. 

This growing entanglement of the corporate and social, this creeping sense of being tracked by invisible eyes, demands an increasing sophistication about what is said and where. The possibility of virulent judgment and rejection induces precisely the kind of hypervigilance and withdrawal that increases loneliness. With this has come the slowly dawning realisation that our digital traces will long outlive us.

Is Long-Term Solitary Confinement Torture? (Atul Gawande, The New Yorker, March 2009)

I spent my lockdown days in Scotland, under the daily COVID guidance of Boris Johnson, who created laws that only permitted going outside once a day, for exercise. For years, like most other countries around the world, we could not meet anyone outside our “bubble” — the small group of people designated as our close contacts. These restrictions on freedom led to societal concerns about the power of government to forbid even the most basic forms of contact, such as a hug, and led many to come back to the fundamental question: Is socialization a human right?

Gawande delves into this concern in this piece, which focuses on the emergence of solitary confinement as a regular form of punishment within the American incarceration system. He draws us in with stories of monkeys and prisoners of war, creating a compelling argument for the inhumanity of isolation from the get-go. He keeps this level of focus throughout, putting you through the experience of solitary confinement with his illustrative depictions. By the end, you’ll be writing to your local representative, asking them to reconsider their position on this brutal prison punishment. 

This presents us with an awkward question: If prolonged isolation is—as research and experience have confirmed for decades—so objectively horrifying, so intrinsically cruel, how did we end up with a prison system that may subject more of our own citizens to it than any other country in history has?

On Solitude (and Isolation and Loneliness [and Brackets]) (Sarah Fay, Longreads, March 2020)

There is an implied difference between solitude and isolation. Solitude is a choice, your own rejection of the world, your own contentment with being alone. With isolation, the rejection flips; you are pushed out of society, no matter how much you want to climb back in. This peculiarity is just one that Sarah Fay explores in this piece. Subtle contradictions are her strong suit, as she walks the line between being alone and being lonely, the various subtleties between autophobia and eremophobia, and the distinction between interaction and connection. Ultimately, Fay’s personality is the driving force of this article, compelling us to read on to uncover her personal revelations on solitude.

The key to connection was not to be needy of connection with others. We have to give freely of ourselves, act as social philanthropists who donate anonymously expecting no plaques or appreciation in return. (Turkle and others have pointed to this as the reason why social media doesn’t make us feel connected. Each tweet, post, or friend request is made with the expectation of a response: a retweet, a repost, a like, an accepted request.) 

Together Alone: The Epidemic of Gay Loneliness (Michael Hobbes, Huffington Post, March 2017)

Isolation can often be interlinked with identity. People who are perpetually alone may come to the conclusion that this feeling is an inherent feature of who they are. This is particularly true with minorities, as each member finds themselves intrinsically different from the people surrounding them. Michael Hobbes reflects on this experience within the gay community, almost a year after the Supreme Court legalized same-sex marriage in all 50 states. Hobbes meets each man he interviews with a deep understanding — he is a gay man himself — as he intertwines his personal narrative with that of his community. He allows their revelations to propel the article, using his own logic to back each reflection. 

I’m always drawn to pieces that effectively communicate an experience I will never personally understand. Hobbes’ depiction is painful; it is raw; but, importantly, it is thoughtful. Each sentence takes care not just for its audience, but for the subjects it depicts. The level of consideration put into each word creates a simultaneously welcoming and challenging reading experience.

You grow up with this loneliness, accumulating all this baggage, and then you arrive in the Castro or Chelsea or Boystown thinking you’ll finally be accepted for who you are. And then you realize that everyone else here has baggage, too. All of a sudden it’s not your gayness that gets you rejected. It’s your weight, or your income, or your race. “The bullied kids of our youth,” Paul says, “grew up and became bullies themselves.”

Loneliness and Me (Claire Bushey, Financial Times, November 2020) 

The Loneliness Project also takes on the normalcy of loneliness with its online archive detailing anecdotes of isolation from hundreds of submitters.

Is loneliness shameful? Does it function as a reflection of who we are as people? These are the integral questions considered by Claire Bushey as she investigates the hows and whys of her own personal loneliness, which started long before the restraints of COVID. To Bushy, being alone is neither a curse nor a blessing: It is simply a way of being. She presents her findings as a blunt response to the ideas that surrounded isolation at the start of the pandemic — that this was a new, torturous experience for all. What draws me to this piece is its honesty: Bushey doesn’t hide behind convention and expectation; she lays out everything she feels and experiences as if it were essential. 

Lonely as a cloud? I am as lonely as an iceberg, an egg, a half carafe of wine. I am lonely as the body is hungry three times a day, hollowed again and again by an ache that does not ease except with the sustenance of connection. The feeling differs from the peace of solitude, which many enjoy, including me at times. Instead, it is a gnawing sadness. Even before the pandemic, a combination of circumstance and choice left me with fewer close ties than I wanted. Every day I forage for connection, and some days I go hungry.

***

Kara Devlin is a writer and student based in Glasgow, Scotland. Her writing has appeared in Her Campus, Medium, and others.

When Swimming As a Muslim Woman Becomes A Political Act

Longreads Pick

After interviewing 30 Muslim women about their experiences being harassed and excluded from places in America for wearing modest swimwear, Rowaida Abdelaziz shares the experiences of a few, who defiantly continue to swim in their burkinis.

Source: HuffPost
Published: Aug 22, 2019
Length: 10 minutes (2,502 words)

To Reflect, To Love, and To Protest: A Pride Month Reading List

Celebrating Pride Month offers us the opportunity to reflect, to love, and to protest. This year, queer folks around the country mobilized and protested, carrying signs calling for the end of ICE and separating families at the border, anti-gun violence, Black Lives Matter, anti-police presence, and President Donald Trump’s impeachment. I take pride in the increasingly mainstream intersectionality of the LGBTQIA+ movement. For me, the energy of Pride motivates the intense volunteer work I do year-round. Sometimes I get overwhelmed by the sheer volume of need, but Pride reminds me that there’s a whole community of LGBTQIA+ folks and allies who have my back. Below is just a sample of the excellent stories and interviews I read throughout June.

1. “I Found God at Queer Summer Camp.” (Jeanna Kadlec, Narratively, June 2018)

 

This essay stunned me from its first paragraph, and it inspired me to create this reading list. Jeanna Kadlec does a brilliant job explaining the layers of trauma ex-fundamentalist Christians grapple with daily, but her essay is shot through with joy, wonder, and hope. As my Southern, Christian college professor would say, I commend it to you. If you’d like to learn more about A-Camp after reading Kadlec’s essay, there’s a delightful roundtable of counselors and campers sharing their experiences.

2. “What It Means to be Trans & at the Beach in America.” (Lia Clay, Refinery29, July 2017)

I rejoiced in these beautiful photos and the accompanying meditations about cis allyship, the inadequacy of safe spaces, body positivity versus dysphoria, and establishing conscientious boundaries.  This is the first summer I’ve thought seriously about what I’d like to wear and how I’d like to be perceived at the beach. Last summer, I bought a pair of robin’s-egg blue swim trunks, but never wore them. I’m still not sure what to wear on top. A bikini with a t-shirt over it? A binder? Maybe I’ll wear something else entirely, something that hasn’t been invented yet. May these photos inspire you to have your freest summer ever and wear whatever fills you with comfort and confidence. Check out “14 Photos of New York’s Queer Beach During Pride” from Them, if your heart craves even more queer joy.

3. & 4. “I Detransitioned. But Not Because I Wasn’t Trans.” and “Why is the Media So Worried About the Parents of Trans Kids?” (The Atlantic, June 2018)

Skip the The Atlantic’s misguided attempt at a timely cover story and read Robyn Kanner and Thomas Page McBee’s thoughtful responses instead. Hire trans people to report and write trans stories, please.

5. “Journalist Jenna Wortham on Cultivating Community for Queer People of Color.” (Taryn Finley, Huffington Post, June 2018)

Jenna Wortham is a force of nature, a podcast host and tech reporter who balances creating brilliant work with enforcing her own boundaries and self-care. Interviewer Taryn Finley describes Wortham’s work “as a salve for the marginalized.”

6. “Heteronormativity is the Ultimate Karaoke: An Interview with Chelsey Johnson.” (Leni Zumas, Tin House, March 2018)

Chelsey Johnson is the author of one of my favorite books, Stray City. It’s a novel about Andrea Morales, a young queer woman living in ’90s Portland grappling with an unexpected pregnancy and shifting definitions of family and community. It’s a book imbued with warmth, one I wish I could read again for the first time. In this interview with Leni Zumas, author of Red Clocks, Johnson discusses “counter[ing[ the canonical coming-out story,” shopping for vinyl, her inner queer-theory critics, and how “the story of a straight white man fucking up” became Stray City.

7. “Meet Me at Cuties: The Queer-Owned L.A. Coffee Bar that Puts Community First.” (Molly Adams, Autostraddle, May 2018)

In this delightful interview, Iris Bainum-Houle and Virginia Bauman, founders of Cuties, discuss implementing and enforcing community guidelines in a queer-owned retail space, the day-to-day maintenance of a small business, and their advice for opening a business of your own. As a human who doesn’t drink, I treasure queer-owned gathering spaces that don’t make alcohol a priority, and I look forward to visiting Cuties next time I’m out west. (Related: I would absolutely pull a Stephanie and try to convince my friends to reenact The Planet of The L-Word at my local cafe.)

Longreads-centric Pride Month Reading List:

The Downwardly Mobile Generation

(RyanJLane/Getty)

It’s a fun little game, pitting the generations against each other. Isn’t it charming how each generation complains about the last? Won’t they ever get along?!

The millennial generation is portrayed as the worst of the bunch, killing everything you hold dear: marriage, family, career, home, community. They’re entitled and flighty, they just can’t settle down or decide what to do. They’ve broken the economy with their scattered interests and varied spending. They have the least job prospects despite the highest level of education of any generation.

You must forgive me for reading with glee Michael Hobbes’s detailed breakdown at HuffPost Highline of the most screwed generation, reaching adulthood in a perfect storm of economic inopportunity. He details how job insecurity, student debt, health care, racist zoning and the housing market have compounded over decades to create a life few millennials can afford. (For an even more in-depth account of millennials and human capital, read Malcolm Harris’s new book Kids These Days) If you want to call this passing the buck, then by all means. But for a generation that has internalized high productivity and blistering output with the nagging feeling that we are barely worthy of a job, it’s at least a reminder that it’s not all in our heads.

Read more…

Everyone Got The Pulse Massacre Story Completely Wrong

Longreads Pick

Over the course of Noor Salman’s trial for allegedly aiding her husband, Omar Mateen, in the 2016 Pulse Nightclub shooting, a different narrative has emerged than the false one the FBI erroneously constructed, and which the media tragically bought into. Melissa Jeltsen points out that not only was there zero evidence it was a targeted hate crime based in homophobia, but there was also no evidence to support Salman’s coerced confession that she and her husband had staked out Pulse beforehand. What’s more, the prosecution was sadistic in making its false case against Salman, who had endured domestic violence and rape at Mateen’s hand. The good news is that she was acquitted. The bad news is that she has been endlessly traumatized, first by Mateen, then by the FBI, the prosecution and the press, not to mention additionally by spending more than a year in jail away from her child.

Source: HuffPost
Published: Apr 4, 2018
Length: 8 minutes (2,146 words)

Eating What Feels Right: On Going Vegetarian

Photo by Anna Guerrero

Bert’s Market was a grocery store in my hometown of central Florida that I remember for three reasons: It was always freezing, the place reeked because they butchered their meat on site, and it’s where I learned where the meat we ate came from.

One day, my sisters and I were with our dad at Bert’s when he lifted a package in front of us and made it dance. I was probably too little to know what species of animal the shrink-wrapped feet had belonged to, but Dad confirmed they were once part of a pig when he oinked. My older sister Ashley thought it was hilarious. My younger sister Abby laughed along with Ashley. I cried. And the feet danced “wee-wee-wee all the way home.”  

That might’ve been the first time I said I’d never eat meat again.

When Abby and I were in middle school, we decided to give vegetarian life a try. That night before dinner we had a conversation with Dad about it.

“What kind of tacos are we having?”

“Beef.”

Abby and I decided we wouldn’t be vegetarians that day.

In my adult life I’ve experienced situations that have prompted further consideration of giving up meat; like when I became a pet owner, when I was in a car that hit a raccoon, when I walked the stables at a county fair and saw the animals drawing breath, or that time I witnessed a rabbit’s death in rural Ontario. Read more…

How Simple Human Connection Can Help Save People from Suicide

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In this deeply reported piece at the Huffington Post Highline, Jason Cherkis looks at how suicide rates in the United States are at an all-time high — leaving no gender or demographic unaffected — while those of other Western or industrialized countries “have been flat or steadily decreasing.” In examining a complicated, underfunded healthcare system in the US that’s ill-equipped to serve those struggling, Cherkis finds some hope in therapist Ursula Whitehead, who uses a therapy pioneered by Jerome Motto to help suicidal people. Through short letters and texts specially crafted to reinforce positive personality traits and avoid judgement of any kind, both Motto and Whitehead have found that they’ve been able to connect with those in despair.

Over the last two decades, suicide has slowly and then very suddenly announced itself as a full-blown national emergency. Its victims accompany factory closings and the cutting of government assistance. They haunt post-9/11 military bases and hollow the promise of Silicon Valley high schools. Just about everywhere, psychiatric units and crisis hotlines are maxed out. According to the most recent figures from the Centers for Disease Control and Prevention, there are now more than twice as many suicides in the U.S. (45,000) as homicides; they are the 10th leading cause of death. You have to go all the way back to the dawn of the Great Depression to find a similar increase in the suicide rate. Meanwhile, in many other industrialized Western countries, suicides have been flat or steadily decreasing.

What makes these numbers so scary is that they can’t be explained away by any sort of demographic logic. Black women, white men, teenagers, 60-somethings, Hispanics, Native Americans, the rich, the poor—they are all struggling. Suicide rates have spiked in every state but one (Nevada) since 1999. Kate Spade’s and Anthony Bourdain’s deaths were shocking to everybody but the epidemiologists who track the data.

Ursula Whiteside is, above all else, a bad pun and cat-based humor kind of person. She seems never to have met a GIF of a penguin, or of Beyoncé, she didn’t like. And her therapeutic practice draws heavily on these cornball ways. One of her clients had trouble getting out of bed in the morning, so Whiteside regularly texted her things like: “Here comes the magical wake up goat to make this day less baaahhh.” And the next morning: “The rabbit needs feeding! Only you can make this happen by hopping out of bed.” When that same client went on vacation last year, Whiteside sent a text urging her to feel “FREEEEEEEE!” accompanied by a cartoon of a dog sticking his head out the window. (These texts, like all others in the piece, were provided not by Whiteside, but by the patients.)

While her messages don’t mimic Motto’s plainspoken voice, they fully capture the spirit of his work. Whiteside started sending them when she went into private practice four years ago and immediately discovered how powerful they were. So many of her patients struggled between sessions. They bristled at the artificial boundary of a 50-minute conversation. The texts acted like evidence of a relationship, tokens her patients could hold on to as proof someone cared about them. It’s hard to overstate how different this is from the correspondence patients usually receive from the medical establishment. Whiteside has a therapist friend who calls the typical automated notices people get when they miss an appointment “I Hate You Letters.”

Still, Whiteside sets rules for her patients: They must agree to receive the texts. They don’t have to text back. If they do, they need to understand that they might not receive a response for at least an hour. She might be in a session with another client, or on her way to lunch. She also wants her patients to give her clear feedback on what they like and don’t like. One person said she hated the penguin memes and would prefer to receive pictures of nature instead. “You’re always paying attention to what they find funny, to what they are saying when they cry,” Whiteside said.

She sets rules for herself, as well: Typos are OK. Being a little annoying is OK. Each text should take no more than 90 seconds to write, because anything longer might read like it’s been workshopped too much, not enough like a message between friends. She also makes sure to time her texts so they don’t arrive only when patients are in crisis. Mostly, they should appear for no particular reason. She had been thinking about them, that’s all.

“I think people die when they feel completely alone,” Whiteside explained.

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How Jerry and Marge Gamed the Lottery

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At the the Huffington Post Highline, Jason Fagone reports on how a dyslexic cereal box designer with a penchant for puzzles and patterns figured out a loophole in the Cash WinFall state lottery game, earning $27 million in gross profits playing the lottery over nine years in two states.

Looking for a little more Fagone in your life? Read an excerpt of his book, The Woman Who Smashed Codes and learn how “know-nothings” Elizebeth Smith Friedman and William F. Friedman became the greatest codebreakers of their era.

So perhaps it was only fitting that at age 64, Jerry found himself contemplating that most alluring of puzzles: the lottery. He was recently retired by then, living with Marge in a tiny town called Evart and wondering what to do with his time. After stopping in one morning at a convenience store he knew well, he picked up a brochure for a brand-new state lottery game. Studying the flyer later at his kitchen table, Jerry saw that it listed the odds of winning certain amounts of money by picking certain combinations of numbers.

That’s when it hit him. Right there, in the numbers on the page, he noticed a flaw—a strange and surprising pattern written into the fundamental machinery of the game that, like his cereal boxes long ago, revealed something no one else knew. A loophole that would eventually make Jerry and Marge millionaires, spark an investigation by a Boston Globe Spotlight reporter, unleash a statewide political scandal and expose more than a few hypocrisies at the heart of America’s favorite form of legalized gambling.

The last time Jerry and Marge played Cash WinFall was in January 2012. They’d had an incredible run: in the final tally, they had grossed nearly $27 million from nine years of playing the lottery in two states. They’d netted $7.75 million in profit before taxes, distributed among the players in GS Investment Strategies LLC.

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The Top 5 Longreads of the Week

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This week, we’re sharing stories from Jason Fagone, Joe Zadeh, Victoria Myers, Andrew Dickson, and Steve Almond.

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

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.

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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.