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Popular Enough to Live: A Reading List About Crowdfunding Health Care

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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.”

The 1960s Rediscovery of Antoni Gaudí

Today, Antoni Gaudí is unquestionably perceived as an architectural giant—seven of his works are UNESCO World Heritage Sites, and after an unlikely decades-long campaign for sainthood the legendary architect could be beatified in 2016—but interestingly, this wasn’t always the case. Martin Filler explored the Spanish Catalan architect’s legacy in a piece for the New York Review of Books. According to  Filler, Gaudí languished in critical limbo for three decades after his 1926 death. It wasn’t until the 1960s that popular opinion began to shift:

Although the Expressionists and Surrealists had esteemed Gaudí as a fellow visionary, popular attitudes began to change dramatically in the 1960s, a decade of worldwide social and cultural ferment that made Gaudí’s work speak to a young generation alert to imaginative and expressive qualities long dismissed as pathologically bizarre, especially in architecture. Indeed, there is something almost psychedelic in his freewheeling aesthetic, characterized by distorted forms, propulsive patterns, kaleidoscopic colors, and quirky materials. The rediscovery of Art Nouveau during the 1960s carried Gaudí along with other newfound fin de siècle heroes of the burgeoning counterculture, including Aubrey Beardsley, Alphonse Mucha, and Louis Comfort Tiffany.

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For the Love of Lettering: Stories About Typography

I didn’t pay attention to font until I worked for my college newspaper. After months of poring over proofs in InDesign, I realized I was learning the differences between fonts, their specific names, where they fit best. I’m no typographer—I don’t have the patience—but I’m fascinated by the subtle ways type entrances us and the absolutely grueling work that goes into its design and placement. Now, not only do I know the difference between type design and typography, but I try to make an effort to appreciate the work that goes in to the books I love, the gig posters for my favorite bands, the fonts on my blog.

1. “Praise the Colophon: Twenty Notes on Type.” (Nick Ripatrazone, The Millions, March 2015)

Colophon: a statement at the end of a book, typically with a printer’s emblem, giving information about its authorship and printing. You know: the details about the typeface, the typographer, the publisher, the who, what and where of the book’s creation. Nick Ripatrazone researches the colophon’s history and its artistic purpose. He concludes, “I call for the return of colophons. The battle of the book is not to be won or lost in preferences of print or digital. The page will always remain. Letters will always remain.” Read more…

Oregon’s Somewhat Secret, Racist Roots

Photo: Ian Sane

Oregon’s natural beauty belies a nasty history. Slavery was never ratified, but the state made a point to exclude anyone who was black or multiracial from living, working or owning property in its constitution. Matt Novak explains at Gizmodo:

When Oregon was granted statehood in 1859, it was the only state in the Union admitted with a constitution that forbade black people from living, working, or owning property there. It was illegal for black people even to move to the state until 1926. Oregon’s founding is part of the forgotten history of racism in the American west.

Waddles Coffee Shop in Portland, Oregon was a popular restaurant in the 1950s for both locals and travelers alike. The drive-in catered to America’s postwar obsession with car culture, allowing people to get coffee and a slice of pie without even leaving their vehicle. But if you happened to be black, the owners of Waddles implored you to keep on driving. The restaurant had a sign outside with a very clear message: “White Trade Only — Please.”

It’s the kind of scene from the 1950s that’s so hard for many Americans to imagine happening outside of the Jim Crow South. How could a progressive, northern city like Portland have allowed a restaurant to exclude non-white patrons? This had to be an anomaly, right? In reality it was far too common in Oregon, a state that was explicitly founded as a kind of white utopia.

But it’s not just Oregon, scholar Walidah Imarisha explained:

“What’s useful about Oregon as a case study is that Oregon was bold enough to write it down,” Imarisha told me. “But the same ideology, policies, and practices that shaped Oregon shaped every state in the Union, as well as this nation as a whole.”

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The Man Who Fought the Synanon Cult and Won

Longreads Pick

Paul Morantz helped bring Synanon down—and almost paid with his life. Here, he tells his story to Gizmodo’s Matt Novak.

Author: Matt Novak
Source: Gizmodo
Published: Sep 27, 2014
Length: 29 minutes (7,264 words)

How Many People Does It Take To Power Times Square?

Times Square is one big, busy machine. Powered by American ingenuity and more than a few megawatts of electricity, these six square blocks stay bright 24 hours a day, seven days a week. You’ve seen Times Square in movies and on TV a million times. A lot of you have probably seen it in real life, teeming with chaos and glowing with capitalism. But how exactly does all that work? The shops and restaurants are one thing, but what exactly makes Times Square such a functional, perpetual spectacle?

That’s a complicated question. Obviously there are the workers themselves. Times Square supports some 385,000 jobs, a little over half of which are in that bright sliver of Midtown, while the other half are strewn across the country supporting Times Square operations from designing the content on the signs to keeping the power plants that power them on line. All together, they help generate about 11 percent of New York City’s economic output, or about $110 billion annually, according to the latest figures. These are the men and women who man the ticket booths, who sell the T-shirts, who clean the hotel rooms, and who keep everyone safe. And since about 350,000 pedestrians pass through Times Square on an average day—that number jumps to 460,000 on the busiest days—that’s no small task.

Adam Clark Estes, writing in Gizmodo about how Times Square—”New York City’s biggest gadget”—operates.

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Photo: Chalky Lives, Flickr

The Hidden Truth About the Cold War Roomba

Over at Paleofuture, Matt Novak looks back at the 1959 Cold War cultural exhibitions hosted by both the United States and the Soviet Union. For the United States, the Moscow exhibition was a chance to show off the newest products and technology from companies like IBM, Sears and Kodak—and perhaps the most important innovation of all when it came to highlighting America’s high-tech future:

Today the autonomous robot vacuum cleaner is passé. Or at the very least, no longer representative of something terribly futuristic. iRobot, the Boston-based company that makes the Roomba, has been churning those things out for over a decade. But in 1959, there was nothing more techno-utopian. The Exhibition had one, thanks to RCA/Whirlpool and a little bit of trickery.

The Exhibition had four demonstration kitchens, but the RCA/Whirlpool Miracle Kitchen was by far the most futuristic. It promised super-fast meal preparation, push-button everything, and automatic robot cleaners. There were even large TV monitors for monitoring different parts of the home, which reportedly impressed Khrushchev. But not everything worked exactly as the exhibitors claimed.

“They had a two-way mirror with a person sitting behind it that could see the room,” Joe Maxwell told me over the phone in his light southern drawl. “And they radio-controlled the vacuum cleaner and the dishwasher.”

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Photo: Library of Congress, via Shorpy

One of a Kind

Longreads Pick

Seth Mnookin reports the story of how one couple, Matt Might and Cristina Casanova, worked with researchers to diagnose their son’s disease and connect with other families whose children also had the same genetic disorder. Mnookin’s story also exposes some of the problems within the cloistered research community. We featured Might’s story about his search to diagnose his son’s disease in 2012.

Source: The New Yorker
Published: Jul 17, 2014
Length: 24 minutes (6,198 words)

When Your Kid Has a Disease No One’s Ever Heard About

The Mights couldn’t wait for the culture of scientific research to change: they had been told that Bertrand could have as little as a few months left to live. The same day that they learned about NGLY1, they began plotting ways to find more patients on their own. Several years earlier, Matt had written a blog post, called “The Illustrated Guide to a Ph.D.,” that became a worldwide phenomenon; it was eventually translated into dozens of languages, including Serbian, Urdu, and Vietnamese. The popularity of the post, combined with Matt’s rising profile among computer programmers, meant that almost anything he put online was quickly re-posted to Hacker News, the main social news site for computer scientists and entrepreneurs. He decided to use his online presence to create what he referred to as a “Google dragnet” for new patients.

For the next three weeks, Matt worked on an essay that described Bertrand’s medical history in clinical detail. Matt called the result, which was more than five thousand words long, “Hunting Down My Son’s Killer,” and on May 29, 2012, he posted it to his personal Web site. It began: “I found my son’s killer. It took three years. But we did it. I should clarify one point: my son is very much alive. Yet, my wife Cristina and I have been found responsible for his death.”

Half an hour after Matt hit “publish,” Twitter began to light up. By the end of the day, “Hunting Down My Son’s Killer” was the top story on Reddit. The next morning, an editor from Gizmodo, a tech blog owned by Gawker Media, asked Matt for permission to republish the essay. In less than twenty-four hours, the post had gone viral. The more it was shared and linked to, the higher it rose in search engines’ rankings, and the easier it would be for parents of other children to find.

In The New Yorker, Seth Mnookin reports about what one couple, Matt Might and Cristina Casanova, did when they discovered that their son had a rare condition that no doctor had ever heard about. We featured Might’s account of his family’s search to diagnose his son’s disease in 2012.

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Photo of Matt Might by: David Van Horn

The Top 5 Longreads of the Week—featuring Slate, Gizmodo, The Awl, Two Serious Ladies, Time, fiction from The New Yorker, and a guest pick by Anna Hiatt.