I’m part of the 63 percent of Americans who don’t have money to cover an emergency costing $500 or more. I don’t own a car or a house, so in the unlikely event of the aforementioned emergency (knock on wood for me, please), my personal crisis would be health expenses uncovered by Medicaid. Like the people you’ll meet in the following stories, I too would turn to crowdfunding.
Everyone, in my opinion, deserves healthcare coverage, and crowdfunding shines a spotlight on the insufficiency of the United States healthcare system. It also demonstrates that the internet is far from democratic. Crowdfunding takes time, energy, and a knack for marketing. Not everyone has these privileges or skills, and when it comes to paying medical bills or seeking life-saving surgeries, that chasm can be fatal.
1. “Sometimes, It Does Hurt to Ask” by Caitlin Cruz (Digg, January 2017)
Just today, a trans man I follow on Instagram posted a picture of the letter he received in the mail saying his health insurance would not cover his top surgery. For trans and gender non-conforming people, the cost of life-affirming medications and operations are steep—financially, physically, and spiritually. According to GLAAD, 19 percent of transgender people don’t have any form of health insurance. Hormone therapy and gender confirmation surgeries can cost tens of thousands of dollars. Instead, many trans people have turned to the internet, using PayPal donations or hosting YouCaring or GoFundMe campaigns, to ask their friends, families, and total strangers for financial assistance.
2. “Is It Fair to Ask the Internet to Pay Your Hospital Bill?” by Cari Romm (The Atlantic, March 2015)
Donating to a medical crowdfunding campaign requires donors to be at once more intimate with and more judgmental of the recipients. At its most basic and most callous, the act of giving boils down something not unlike comparison shopping: Who, out of all the people who have shared their tragedy on the Internet, is the most deserving of money? And, before that, who can entice donors to click?
As medical crowdfunding has become more popular, so too has the idea of its so-called “perfect victim,” said Margaret Moon, a bioethicist and professor of pediatrics at Johns Hopkins University: the person whose inability to pay for their care came down to sheer bad luck—and bad coverage, if they had any insurance at all. “They’d done everything right, they’d explored all the possibilities and were still left short,” she said. “The people donating to these sites don’t know if somebody’s made a request because they just couldn’t figure out their insurance, or because their insurance failed them. Wouldn’t you be more willing to donate to someone who had played out their insurance?”
3. “Who Should Pay for Evan Karr’s Heart?” by Anne Helen Petersen (BuzzFeed, March 2017)
Evan Karr is a a precocious 13 year old Kentuckian who was born with tetralogy of Fallot, a heart defect. Evan has had three heart surgeries, and at the top of Petersen’s story, he’s gearing up for a fourth.
4. “The Real Peril of Crowdfunding Health Care” by Anne Helen Petersen (BuzzFeed, March 2017)
Most of the successful campaigns on a crowdfunding homepage fall under the rubric of “fighting unfairness,” a designation that expands to include one of GoFundMe’s most successful campaigns of all time (for Standing Rock) but mostly signifies struggles against diseases that seemingly strike at random: cancer, genetic disorders, and other afflictions ostensibly out of the victim’s control. Such conditions are often referred to as “faultless.”
It’s far harder to fund so-called “blameworthy” diseases—addiction and mental health in particular—that are popularly conceived as either the fault of the victim or somehow under their control. You rarely see campaigns for adult heart disease, for example, or “getting my life together as a single mom”—both are viewed as the result of “choices” instead of “needs.” If there’s already a hierarchy of affliction and need in this country, then crowdfunding often works to exacerbate it.
5. “Go Viral or Die Trying” by Luke O’ Neil, Esquire, March 2017)
Luke O’Neil’s feature for Esquire opens with an anecdote about Kati McFarland, a 25-year-old young woman with Ehlers-Danlos syndrome who turned to crowdfunding to offset the cost of medical care. McFarland garnered national attention when she confronted Sen. Tom Cotton about his perspective on the Affordable Care Act.
After reading several of these crowdfunding stories, I was feeling a little jaded. I couldn’t help but cringe at the following, from YouCaring’s director of online marketing:
“The secret prize for people who raise money on the site is they find out how much people care about them,” says YouCaring’s [Jesse] Boland. “The money is the primary ask but they end up being better off for having connected to their community, so they get a sense of peace and belonging.”
O’Neil also spoke to editors from Gizmodo, Uproxx, Upworthy, and the Washington Post about their experiences studying and spotlighting viral campaigns.
6. “Kickstarting a Cure” by Noah Rosenberg (Narratively, July 2013)
Jimmy Lin is the founder of the Rare Genomics Institute, which he describes as “Amazon-slash-Kickstarter for science.” Lin’s organization matches families with researchers and geneticists from RGI affiliates and helps them raise money to cover the costs of expensive tests:
“The biggest thing we talk about with our team is, ‘If this was our child who was sick, what extent would we go to to help them?’” Lin says of RGI’s efforts. “If this was our kid that was sick, this is exactly what we’d do.”
People often spoke of Pierce’s opponent, District Attorney Britt, in a whisper, as though he were the Voldemort of Robeson County. Stories of Lumbees and African Americans being coerced to plead guilty in court were as common as the ramshackle tobacco barns that dotted the landscape.
“It’s hard to comprehend how unwholesome and suffocating the system was,” testified Maurice Geiger — an attorney and founder of a nonprofit that monitored Robeson’s courts — in 1991. In a review of thousands of cases from the 1980s, Geiger estimated that at least 1,000 innocent people were wrongfully convicted every year; he also found that Britt’s office used a range of aggressive ploys to force guilty pleas. The court calendar was manipulated to make defendants appear in court for days or weeks on end while they waited for their cases to be called. Others were tricked into signing forms that waived their right to counsel — often easy to do, given the county’s adult illiteracy rate of 30 percent.
In a story co-published at In a story co-published at MEL Magazine and Narratively, TV producer Nicole Lucas Haimes details how one North Carolina man’s attempt to run an honest court entangled him in political corruption and the drug trade and got him killed. So far for him, there is no justice.
In 2016, I published my New Year’s resolutions on Longreads. As 2017 dawns, I thought I’d check in with my old self, dust off 2016’s goals and set some new intentions.
1. Alas, I never did make it to Iceland, but I did a lot of domestic travel in 2016. In Washington State, I touched the Pacific Ocean for the first time and slept on a sailboat. In Asheville, I got a new tattoo and swooned inside Firestorm Books & Cafe. I saw friends and family marry in Richmond and Chautauqua. I saw Deaf West perform Spring Awakening and the one-weekend revival of God Bless You, Mr. Rosewater in NYC. I even visited Foamhenge! (That’s me in the photo above.) I’m returning to Asheville in 2017; beyond that, I have no concrete travel plans. Feel free to sponsor me on a trip to the ends of the Earth and back! I’ll write about it! For now, I’m seeing the world via the following essays from 2016:
- “Here’s What It’s Like to Travel While Wearing a Hijab.” (Sarah Hagi, Fusion)
- “The Extreme Travelers Who Self-Exile in Siberia.” (Yann Laubscher & Albertine Bourget, Narratively)
- “What I Learned Tindering My Way Across Europe.” (Allison P. Davis, Travel & Leisure)
- “Meet a Man Who Took 14 Cross-Country Flights in 7 Days for the Miles.” (Ester Bloom, The Billfold)
- “Temples for the Literary Pilgrim.” (The New York Times)
We asked a few writers and editors to choose some of their favorite stories of the year in various categories. Here, the best in investigative reporting.
* * *
Senior Editor at The California Sunday Magazine.
Hands down the best reporting I read all year is Shane Bauer’s “My Four Months as a Private Prison Guard.” Bauer applied for a job at the Winn Correctional Center in Louisiana; though, let’s be real, as you’ll learn from the piece, applications are hardly necessary. Winn, which is run by the Corrections Corporation of America, the company that basically invented private prisons in the eighties, pretty much begged him to come onboard. After all, the pay is $9 an hour, the shifts are twelve hours long, and only some one-third of hires stick around. Bauer’s piece gets readers up to speed on the history of private prisons and their ubiquity today and takes readers deep into the particulars of the understaffed hellhole that is Winn–a place in which the guards, having so little support, are left to negotiate their own rules with prisoners. Bauer’s portrait of the prison community–and it is a community–is rich, illuminating without being condescending, in part because Bauer is, to some extent, a participant. Here’s a taste of an exchange between Bauer’s 19-year-old coworker, a kid all too keen to demonstrate his power named Collinsworth, and a prisoner he won’t deign to talk to:
“The best thing you could do is get to know people in the place.”
“I understand it’s your home,” Collinsworth says. “But I’m at work right now.”
“It’s your home for 12 hours a day! You trippin’. You ’bout to do half my time with me. You straight with that?”
“It’s probably true.”
“It ain’t no ‘probably true.’ If you go’ be at this bitch, you go’ do 12 hours a day.” He tells Collinsworth not to bother writing up inmates for infractions: “They ain’t payin’ you enough for that.” Seeming torn between whether to impress me or the inmate, Collinsworth says he will only write up serious offenses, like hiding drugs.
First of all–mini spoiler alert–you can make a diamond out of someone’s ashes! That’s just one of the odd little twists in Alice Gregory’s nail-biter about the most unlikely of nail-biter subjects–an architect’s archive. The architect in question is the very on-trend (and truly talented) Luis Barragán, who designed geometric buildings with vivid colors throughout Mexico. And the problem is that a Swiss manufacturing family owns his archive. The woman in that family for whom the archive was bought is determined to carefully catalog his work herself and protect his legacy and so she has refused to grant anyone access to his archive for the last two decades. This story is about a contemporary artist’s clever plot to persuade her otherwise. Gregory’s excellent structuring lends suspense and urgency to questions about how to best maintain a virtuoso’s legacy. Who should be allowed access to his archives and who should determine who should be allowed access? Read more…
Autumn is my favorite time to walk around my city. The swirling skies, the cool weather, the breeze, the crunchy leaves—it’s dynamic, and, best of all, I don’t sweat as much.
In Wanderlust: A History of Walking, Rebecca Solnit writes, “Walkers are ‘practitioners of the city,’ for the city is made to be walked. A city is a language, a repository of possibilities, and walking is the act of speaking that language, of selecting from those possibilities. Just as language limits what can be said, architecture limits where one can walk, but the walker invents other ways to go.”
I love this quote. Despite the fear I feel sometimes as a woman walking alone, walking places gives me a sense of control. I’m not at the mercy of someone else’s schedule. I can take a new, weird route or linger by the Canadian geese in a recently renovated lake. In the following essays, Antonia Malachik discusses the cultural implications of our aversion to walking; Garnette Cadogan relates how his walks are coded by his skin color, depending on where in the world he is; Adee Braun praises the New York eat-and-walk—and that’s not all. You can read these on the move. Just don’t trip, okay?
1. “The End of Walking.” (Antonia Malachik, Aeon, August 2015)
We’ve featured Antonia Malachik’s article on Longreads before, but it fits this week’s theme too perfectly to ignore:
“In many parts of the US, pedestrianism is seen as a dubiously counter-culture activity. Gated communities are only the most recent incarnation of the narrow-eyed suspicion with which we view unleashed strangers venturing outside on foot, much less anywhere near our homes. A friend of mine told me recently that a few years ago, when she lived in Mississippi, she was stopped by police constantly simply because she preferred to walk to work. Twice they insisted on driving her home, ‘so I could prove I wasn’t homeless or a prostitute. Because who else would be out walking?’”
2. “A Walking Tour of the Places Where I Hit Rock Bottom.” (Michelle Tea, BuzzFeed News Reader, October 2016)
Author and activist Michelle Tea takes us to four of her old haunts: a clown-themed strip club, a bar, her old apartment, and an on-ramp.
3. “Walking While Black.” (Garnette Cadogan, LitHub, July 2016)
In an essay that remains sadly, horrifically relevant, Garnette Cadogan describes his risk-tainted wanders through Kingston, Jamaica; New York City; and New Orleans:
“Walking while black restricts the experience of walking, renders inaccessible the classic Romantic experience of walking alone. It forces me to be in constant relationship with others, unable to join the New York flaneurs I had read about and hoped to join…Walking as a black man has made me feel simultaneously more removed from the city, in my awareness that I am perceived as suspect, and more closely connected to it, in the full attentiveness demanded by my vigilance.”
4. “Mastering the Art of the New York Eat-and-Walk.” (Adee Braun, Narratively, September 2014)
My friends and I paused on a classic Manhattan street corner so we could purchase hot dogs on our ill-fated attempt to catch our bus back to Maryland. Certain denizens of the Mid-Atlantic are familiar with the Day Trip to New York City: You wake up earlier than is reasonable in order to board a stale, at-capacity charter bus full of crabby Marylanders (or wherever), and a few restless hours later, you’re deposited somewhere outside Times Square or Chinatown or the Javits Center. Then, you see a show (anecdotally, the most common reason for these jaunts), or go to the Strand bookstore (guilty), or something else. After we saw our show of choice (cliche, I know, but it was a one-weekend remount), we partook in that hallowed New York tradition: the eat-and-walk.
At Narratively, Adee Braun has written a love letter to the eat-and-walk, a lesser-known American export and beloved regional pastime.
5. “Ghosts and Empties.” (Lauren Groff, The New Yorker, July 2015)
Lauren Groff’s command of language will entrance you in this short story about an on-edge mom who takes evening walks in her North Florida neighborhood.
At Narratively, Batya Ungar-Sargon provides a look into the phenomenon of Hasidic Jews being treated with heavy psych meds to steer them away from sexual behavior considered by the religion to be taboo. Men called askanim, refer members of their community who engage in anything considered sexually deviant to a handful of specialized psychiatrists, who treat their subjects’ theological transgressions as mental illness. Transgressions include but are not limited to: masturbation, same-sex attraction, and responding to the kind of sexual ennui that might result from marrying at 20 by engaging in affairs.
Joseph is one of many Hasidic Jews in the United States and Israel who are taken by community operatives like askanim to see psychiatrists for what are essentially religious, rather than psychiatric, difficulties. I spoke to twenty individuals in the New York area who had all been sent to the same five or six psychiatrists (and all knew others who had been through the same thing, often cycling between them), where they say they were prescribed anti-psychotics, hormones, or anti-depressants for masturbating, questioning the tenets of the community’s faith principles, experimenting with or even fantasizing about same-sex partners, or displaying “too high” a sex drive. The “symptoms” that psychiatrists take as evidence of disorders can vary, according to their patients. One woman told me that, when she confessed to an askan and later to a psychiatrist that the strictures of her life made her feel stuck, she was prescribed anti-depressants. When that didn’t solve anything, her askan took her to a second psychiatrist, who told her that she was getting a sexual high from her job, where she interacted with men, and diagnosed her with bipolar disorder. She was prescribed Abilify, an anti-psychotic medication. Another young woman, who had kissed a girl at school, was compelled by the principal to see the same psychiatrist. She was prescribed anti-psychotic medications, “to make you feel better and to decrease your temptations,” the doctor told her. “You’re not going to want to misbehave as much.”
When I was little, mystery books were my favorite. I read the Boxcar Children, the Bobbsey Twins and the Happy Hollisters. In school, there was Cam Jansen, Sammy Keyes and Harriet the Spy. When I visited my grandparents, I read my mom’s childhood books: Nancy Drew, the Hardy Boys and Trixie Belden. My mom gives my grandfather the latest Mary Higgins Clark release every Christmas.
In high school and college I abandoned mystery novels and turned to spooky TV shows instead. My family was “Monk”-obsessed; when “Monk” ended, we watched “Psych.” I threw myself into “Lost” during finals and “Criminal Minds” on school breaks. Post-college, I binged “Fringe,” “The X-Files,” “The Killing,” “The Fall,” “Miss Fisher’s Mysteries”—the list goes on. Now that I work in a bookstore, I’ve started to read mystery novels again. To celebrate, here’s a reading list about fictional detectives and the authors who mastermind their literary crime-solving, as well as real-life detectives searching for the truth. Read more…
In the past two weeks, Cleveland, Ohio hosted the Republican National Convention and Philadelphia, Pennsylvania hosted the Democratic National Convention. Donald Trump and Hillary Clinton earned the nominations from their respective parties; they will face off in November. Not everyone is thrilled with this outcome. Ted Cruz urged delegates to vote with their conscience and didn’t endorse Trump, and Bernie Sanders supporters walked out of the DNC or protested outside the convention. I’m equally intrigued and exhausted by the political realm right now, so I’m relying on the thoughtful analyses and on-the ground reporting by talented writers.
1. “The R.N.C. on TV: Ivanka’s Weaponized Graciousness.” (Emily Nussbaum, The New Yorker, July 2016)
The dangerous choices of the postergirl for the Family Trump, who, you know, probably isn’t actually a Republican. If you haven’t read Chimamanda Ngozi Adichie’s short story about Melania Trump, read that, too. Read more…
I can see your future / there’s nobody around.
It was a typically brutal Maryland summer, and I worked for a small music publishing company. I was often alone, collating or alphabetizing or organizing something, armed only with my iPod. I alternated between Belle & Sebastian’s The Life Pursuit and Keane’s first two albums. When my workday was over I’d walk the half-mile to the church on Main Street where my mom was a secretary. Or I’d go to the local library, its silence so different from the tense quiet of the publishing office. With my soundtrack, these walks became existential adventures. Even now, as I hit play on “Another Sunny Day,” I am still walking down the sidewalk, my sternum swollen with something adjacent to love.
I like thinking about this time in my life. I think I am still looking for something that feels like those walks. They felt endlessly, stupidly romantic. I didn’t need anything except a charged battery. It’s unrealistic that my entire life should feel like a two-mile radius in the town where I had a dissatisfying part-time summer job. I think what I miss is a path with a destination. Then, I could take as long as I wanted on my walk or try a different route, but I knew where I was going. I don’t know where I’m going anymore. That’s what this part of my twenties is about, and that’s okay, but it’s deeply unsettling. I’m too anxious to take in the view or to consider an alternate path. I am desperate for news of the future.
1. “The Cat Psychic.” (Rachel Monroe, Hazlitt, May 2016)
When she returned from a month-long trip, Rachel Monroe’s cat, Musa, didn’t want to be near her anymore. He avoided their apartment and stayed outdoors for long stretches of time. Distraught, Monroe did something she never thought she’d do—she called a pet psychic to see if she could repair their relationship. Read more…