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The Invisible Lives of Young Women With Chronic Illnesses

Michele Lent Hirsch

Jessica Gross | Longreads | March 2018 | 18 minutes (4,580 words)

When Michele Lent Hirsch was growing up, she was hardly ever sick. In college, she had to have hip surgery; by her mid-20s, she had also been diagnosed with idiopathic anaphylaxis, thyroid cancer, and Lyme disease. In the midst of these issues, her father, who’d had multiple sclerosis, ended his own life. Now in her 30s, Hirsch has had years of experience moving through the world as a chronically ill young woman. In her new book, Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine, she interweaves personal experience and reporting to examine, through the lens of chronic illness, issues that she believes all women face.

Hirsch and I are friends—we get together every few months to talk about writing and our lives (she’s a poet, too)—and yet I didn’t know the depth of her experience until I read her thoughtful, complicated, and beautifully written book. I think that’s part of her point: to bring these under-discussed experiences into the light. We met at a restaurant in the West Village and spoke about how chronic illness throws issues of being young and female into sharper relief, how illness intersects with not only gender and age but also sexuality and race, and how, in the midst of these deeply challenging experiences, there is a basic need for empathy.

* * *

I imagine it was an intense decision to write publicly about your experience of illness. Can you talk about deciding to write the book?

I’d had this idea for an embarrassing number of years before I acted on it. I’d had hip surgery, I’d had anaphylaxis that almost killed me, but it wasn’t until I got cancer that I started to think, “This is a very particular experience that I’m having.”

I was diagnosed with cancer in 2011, right before my 26th birthday. Originally, I wanted to write an essay about the particulars of being young, female and sick and all the ways that illness bumped up against what was already difficult about being a young woman in the world. I mentioned it to a friend who was an editor and a writer, and she said, “That sounds bigger than an essay. That sounds like a whole book.” I thank her in the back of the book, because she was right.

For a few years, I didn’t believe her. I think that’s because so many women don’t talk about this stuff with each other, so you could be friends with someone and not even know that they have a chronic illness. But over the next few years, I started to see how often it just came up at parties or in conversation with a stranger or a friend of a friend. I began to realize that not only was this bigger than an essay, it was also way bigger than my experience. So at some point I said to my friend, “You’re right, it’s a book.” It is this vicious cycle: If you keep thinking you’re the only one, then you’re not going to share your experience, and then no one shares it, and then we’re all living in these weird, sad little silos. Read more…

Grief is a Jumble Word

Ken Otterbourg | Longreads | February 2018 | 14 minutes (2,710 words)

 

I woke up sad today. I was sad when I got out of bed, and I was sad when I went downstairs to get the tiny can of wet cat food for the four cats. I was sad when I nearly stumbled on the bottom step of the first landing in the basement. I was sad as I thought about what would happen if I fell and lay in the basement for several hours with a broken leg or a concussion while the cats ate the cat food and licked my face and the dog wondered where I was after he had heard the pop top on the cat food can that signaled it was soon to be his turn. But I did not fall. So, I was sad when I let Bailey out of his crate and watched him scratch his face against the carpet while I got his leash.

I was sad when we walked outside as the sun was coming up in the east and I could still make out Venus in a morning sky that was the color of hope flecked with a few clouds off in the distance. Venus helped but not enough. I was sad when we walked down Fourth Street. I was sad crossing Broad Street and watching the morning traffic build and all the people on their cell phones even this early. I was sad after Bailey took his shit in the monkey grass even though it was a good shit that indicated the virus that nearly killed him two weeks ago and caused him to shit blood that was the color of raspberry juice was gone and that the $550 I had spent during four hours at the emergency vet between 10 p.m. and 2 a.m. was definitely money well spent and necessary.

After we got home, I was sad scooping out his dog food into the bowl and giving him the remains of the cat food that stuck to the tiny can. The dog was happy and wagged his tail and swirled in delight. I emptied the dishwasher, and that didn’t make me happy or cause me to swirl in delight. It never does. I was sad drinking my coffee, which usually made me happy because it made me think of how much JoAnne loved coffee and how when I met her she used to drink a whole pot of it every day, so much that I wondered how she got any work done because she must have kept having to pee. But now things like that make me sad, and I would stop drinking coffee myself but I don’t think it would matter. I was sad eating my English muffin and banana and reading the newspaper and doing the Jumble and wondering if there is a list somewhere of all the five- and six-letter words that can only be arranged in one correct way and are therefore Jumble suitable. Those are the sorts of things that I think about, and many times a little nerdish insight or aha moment of that type is enough to make me smile. But they can also make me sad because there is nobody to share that insight with except the dog and the four cats and they don’t care, and it’s not the type of thing that you can save until later when you speak to an actual person because you would have to figure out how to slip it into a conversation so that it sounded natural and it never does. It’s the sort of utterance best delivered with no preamble across a kitchen table to the woman who loves you in spite of these tendencies and maybe even a little because of them.

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How Black Panther Asks Us to Examine Who We Are To One Another

Marvel Studios

Rahawa Haile | Longreads | February 2018 | 12 minutes (3,078 words)

(Spoiler alert! This essay contains numerous spoilers about the film Black Panther.)

By the time I sat down to watch Ryan Coogler’s Black Panther, a film about a thriving, fictional African country that has never been colonized, 12 hours had passed since the prime minister of Ethiopia resigned following years of protest and civil unrest. It would be another 12 hours before the country declared a state of emergency and enforced martial law, as the battle for succession began. Ethiopia has appeared in many conversations about Black Panther since the film’s release, despite an obvious emphasis on Wakanda, the Black Panther’s kingdom, being free of outside influences — and finances.

While interviews with Coogler reveal he based Wakanda on Lesotho, a small country surrounded on all sides by South Africa, it has become clear that most discussions about the film share a similar geography; its borders are dimensional rather than physical, existing in two universes at once. How does one simultaneously argue the joys of recognizing the Pan-African signifiers within Wakanda, as experienced by Africans watching the film, and the limits of Pan-Africanism in practice, as experienced by a diaspora longing for Africa? The beauty and tragedy of Wakanda, as well as our discourse, is that it exists in an intertidal zone: not always submerged in the fictional, as it owes much of its aesthetic to the Africa we know, but not entirely real either, as no such country exists on the African continent. The porosity and width of that border complicates an already complicated task, shedding light on the infinite points of reference possible for this film that go beyond subjective readings.
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We’ve Always Hated Girls Online: A Wayback Machine Investigation

Illustration by Katie Kosma

Julianne Aguilar | Longreads | February 2018 | 14 minutes (2,894 words)

Once upon a time, in 1999, when the internet was small, when it came through your phone and not just on your phone, when the first browser war had not yet been won, when you had to teach yourself a few lines of code if you wanted to exist online, when the idea of broadcasting your real name for anyone to see was unthinkable — in those early days, before Twitter revolutions, before Facebook Live homicides, when the internet was small and most people didn’t understand it, and only the nerds hung out there even then, it was already happening.

Even then, people hated girls on the internet.

* * *

Eighteen years went by before I thought about Sara again.

I’d just finished a project in which I had tracked down a fanfiction author I’d loved in the early 2000s. Jami had been relatively easy to find: It turns out that if you’d had a sprawling internet presence as a child, you probably have one now, under new names, on new websites. Not only had I found Jami, but I learned that she is now a successful, Hugo-nominated author. I was deliriously happy. She’d made it — this girl who’d written fanfiction had achieved the wildest dream and turned that talent into an actual writing career. I wanted the same for Sara, a tangible success that followed minor internet celebrity.

In 1999 Sara had a website hosted on Expage, and so did I. I didn’t know her: I was attracted to Sara’s website because it was incredibly well-designed for 1999, and because Sara, like me, was a middle school girl who loved the internet. Her “About Me” page listed her age as 12, same as me. I don’t remember how I found her site but I do remember that it’s what initially sparked my interest in web design and the internet in general.

Between 1999 and now, I would occasionally think of Sara. I’d been addicted to her website. In the design anarchy of Web 1.0, Sara had an eye. She had a sense. Her website looked like few others at the time, in that it looked good, like something you couldn’t make yourself. She knew how to hold an audience: she updated frequently, changing her layouts often and offered the code for free. Because of this, her website was hugely popular. Many years later I’d see her name mentioned in a discussion about early internet celebrities. I was there, I thought. I was one of her biggest fans.

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To Live and Die in Utopian New Zealand

Kai Schwörer/picture-alliance/dpa/AP Images

If the world is going to end with a whimper not a bang, then some of the world’s richest people are going to whimper together in New Zealand. People like Trump supporter and PayPal co-founder Peter Thiel have staked their claim on the small island nation as the ideal refuge during a global apocalypse. The narcissism involved in such survivalism is staggering but par for the course; capitalists like Thiel have destabilized our world economically and ecologically, and now they want to buy their way out of the destructive ramifications in someone else’s country. New Zealand has strict rules around citizenship and land ownership for foreign nationals, which is why Thiel’s secretive acquisition of piece of the South Island raised many concerns.

Curious himself, Irish writer Mark O’Connell searched for answers for The Guardian, to understand the peculiar ideological appeal of New Zealand to a certain class of Silicon Valley elite. What he found while touring the New Zealand countryside is unnerving and infuriating, particularly the way many billionaires plan to profit on global catastrophe, and the possibility that Thiel intends to turn New Zealand into his own country after its collapse. Fortunately, O’Connell sees the dark comedy of it all. He calls Thiel “a canary in capitalism’s coal mine who also happens to have profited lavishly from his stake in the mining concern itself.” He shows how Thiel is “a caricature of outsized villainy,” and “a human emblem of the moral vortex at the centre of the market.”

The Kiwis I spoke with were uncomfortably aware of what Thiel’s interest in their country represented, of how it seemed to figure more generally in the frontier fantasies of American libertarians. Max Harris – the author of The New Zealand Project, the book that informed the game-sculptures on the upper level of The Founder’s Paradox – pointed out that, for much of its history, the country tended to be viewed as a kind of political Petri dish (it was, for instance, the first nation to recognise women’s right to vote), and that this “perhaps makes Silicon Valley types think it’s a kind of blank canvas to splash ideas on”.

When we met in her office at the Auckland University of Technology, the legal scholar Khylee Quince insisted that any invocation of New Zealand as a utopia was a “giant red flag”, particularly to Māori like herself. “That is the language of emptiness and isolation that was always used about New Zealand during colonial times,” she said. And it was always, she stressed, a narrative that erased the presence of those who were already here: her own Māori ancestors. The first major colonial encounter for Māori in the 19th century was not with representatives of the British crown, she pointed out, but with private enterprise. The New Zealand Company was a private firm founded by a convicted English child kidnapper named Edward Gibbon Wakefield, with the aim of attracting wealthy investors with an abundant supply of inexpensive labour – migrant workers who could not themselves afford to buy land in the new colony, but who would travel there in the hope of eventually saving enough wages to buy in. The company embarked on a series of expeditions in the 1820s and 30s; it was only when the firm started drawing up plans to formally colonise New Zealand, and to set up a government of its own devising, that the British colonial office advised the crown to take steps to establish a formal colony. In the utopian fantasies of techno-libertarians like Thiel, Quince saw an echo of that period of her country’s history. “Business,” she said, “got here first.”

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The Hotel of Multiple Realities

Emily Carter Roiphe | Longreads | February 2018 | 14 minutes (3,466 words)

The Waiting Room

I was leaning on my husband’s shoulder one day as we were walking through a lobby that seemed a bit crowded for the part of New Mexico where we lived. On the soundtrack there was some desultory chatter and the hum of fluorescent lights.

“Where are we NOW?” I asked in exasperation.

“You had a brain aneurysm, sweetheart, you had brain surgery.”

“Is the surgery over?” I asked.

“Yes, for a whole day,” he said.

“So, we can go now?”

We’d been planning to go camping in Monument Valley, and I didn’t want to complicate our schedule. I’d had something wrong, but they fixed it, I felt fine, could we please get on with it? Then I saw his face. Usually, my husband is pretty cocky in public, thinking that he has me, and I am so wonderful, that he wants to make sure people notice, so he keeps up a performative patter of flirtatious banter about how brilliant, sexy, infuriating, and baffling I am. It’s his routine. There was something about his tone of voice now, that made me turn to look at his face; it was ashen. He looked terrified.

“What?” I said. “I feel fine. There’s nothing wrong with me anymore. I want to go camping like you promised.”

His eyes filled and he said, “Let’s go back to your room.”

First I thought, I have to do whatever, say whatever, be whatever it takes to get that look off his face, it’s making a bouquet of broken glass bloom in the dark place behind my ribs.

Then I thought, Room? What room? Are we in a hotel?

Then I realized I wasn’t walking, but perhaps, sitting and floating along. How was this possible, I wondered analytically. Am I walking or riding, standing up or sitting, falling down or getting to my feet? I wasn’t alarmed by these questions but I knew one thing instinctively: keep those questions to yourself, tell no one you have questions, or you can forget about that camping trip. I was very focused on the idea of going camping, a tent, all the stars in the wide open sky out there.
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The Great Online School Scam

Photo: Getty Images.

Noliwe Rooks | Excerpt from Cutting School: Privatization, Segregation, and the End of Public Education | The New Press | September 2017 | 18 minutes (5,064 words)

* * *

DeVos’s ties to—and support for—the profoundly troubled virtual school industry run deep.

In a 2013 interview with Philanthropy Magazine, DeVos said her ultimate goals in education reform encompassed not just charter schools and voucher programs, but also virtual education. She said these forms were important because they would allow “all parents, regardless of their zip code, to have the opportunity to choose the best educational setting for their children.” Also in 2013, one of the organizations that she founded, the American Federation for Children, put out a sharply critical statement after New Jersey’s school chief, Chris Cerf, declined to authorize two virtual charter schools. The group said the decision “depriv[es] students of vital educational options.” Yet another group DeVos founded and funded, the Michigan-based Great Lakes Education Project, has also advocated for expansion of online schools, and in a 2015 speech available on YouTube DeVos praised “virtual schools [and] online learning” as part of an “open system of choices.” She then said, “We must open up the education industry—and let’s not kid ourselves that it isn’t an industry. We must open it up to entrepreneurs and innovators.” DeVos’s ties to—and support for—the profoundly troubled virtual school industry run deep.

At the time of her nomination, charter schools were likely familiar to most listeners given their rapid growth and ubiquity. However, the press surrounding the DeVos nomination may have been one of the first times most became aware of a particular offshoot of the charter school movement—virtual or cyber schools. Despite flying somewhat under the mainstream radar, online charter schools have faced a wave of both negative press and poor results in research studies. One large-scale study from 2015 found that the “academic benefits from online charter schools are currently the exception rather than the rule.” By June of 2016, even a group that supports, runs, and owns charter schools published a report calling for more stringent oversight and regulation of online charter schools, saying, “The well-documented, disturbingly low performance by too many full-time virtual charter public schools should serve as a call to action for state leaders and authorizers across the country.” The jointly authored research was sponsored by the National Alliance for Public Charter Schools, the National Association of Charter School Authorizers, and 50Can, all groups that lobby state and federal agencies to loosen regulations to allow more robust charter-school growth. As one of the report’s backers said, “I’m not concerned that Betsy DeVos supports virtual schools, because we support them too—we just want them to be a lot better.” Such an upswing in quality seems highly unlikely to happen anytime soon. They are yet another trickle in the stream of apartheid forms of public education flowing down from the wealthy and politically well connected to communities that are poor, of color, or both.

In Pennsylvania, Michigan, South Carolina, Ohio, and Florida, poor students from rural areas as well as those in underfunded urban schools that primarily educate students who are Black and Latino today face a new response to the question of how to solve the riddle of race, poverty, and educational underachievement. Increasingly, despite little supporting evidence, a growing number of states and local school districts no longer believe that the solution is merely about infrastructure, class size, funding, or hiring more teachers. In states with high levels of poverty and “hard to educate” Black and Latino students, virtual schools are on the rise. Such schools are not growing nearly as fast in school districts that are white and relatively wealthy, nor are they the educational strategy of choice in most private schools. As much a business strategy as one promoting learning, virtual education allows businesses to profit from racial inequality and poverty. Sadly, this particular cure to what ails our education system more often than not exacerbates the problems. Read more…

The Internet Isn’t Forever

Illustration by Shannon Freshwater

Maria Bustillos | Columbia Journalism Review | February 2018 |2900 words (12 minutes)

This story is published in collaboration with the Columbia Journalism Review, whose Winter 2018 issue covers threats to journalism.

The Honolulu Advertiser doesn’t exist anymore, but it used to publish a regular “Health Bureau Statistics” column in its back pages supplied with information from the Hawaii Department of Health detailing births, deaths, and other events. The paper, which began in 1856 as the Pacific Commercial Advertiser, since the end of World War II was merged, bought, sold, and then merged again with its local rival, The Honolulu Star-Bulletin, to become in 2010 The Honolulu Star-Advertiser. But the Advertiser archive is still preserved on microfilm in the Honolulu State Library. Who could have guessed, when those reels were made, that the record of a tiny birth announcement would one day become a matter of national consequence? But there, on page B-6 of the August 13, 1961 edition of The Sunday Advertiser, set next to classified listings for carpenters and floor waxers, are two lines of agate type announcing that on August 4, a son had been born to Mr. and Mrs. Barack H. Obama of 6085 Kalanianaole Highway.

In the absence of this impossible-to-fudge bit of plastic film, it would have been far easier for the so-called birther movement to persuade more Americans that President Barack Obama wasn’t born in the United States. But that little roll of microfilm was and is still there, ready to be threaded on a reel and examined in the basement of the Honolulu State Library: An unfalsifiable record of “Births, Marriages, Deaths,” which immeasurably fortified the Hawaii government’s assertions regarding Obama’s original birth certificate. “We don’t destroy vital records,” Hawaii Health Department spokeswoman Janice Okubo says. “That’s our whole job, to maintain and retain vital records.” Read more…

Is This the Most Crowded Island in the World? (And Why That Question Matters)

(Alex MacGregor)

Alex MacGregor | Longreads | February 2018 | 19 minutes (5,053 words)

Geographers have an affinity for superlatives. Among the millions of named features on Earth, if something can claim to be the biggest, tallest, deepest, longest, or otherwise most extreme, it gets a lot of attention.

Asserting any superlative involves a degree of hubris. Our world has been picked over for superlatives, but how sure can we really be about any one claim? Any elementary school class will recite in unison that Mount Everest is the tallest mountain in the world — that is, unless the class happens to contain an Ecuadorian student. Ecuadorians correctly learn that the highest mountain in the world could be measured by distance from the center of the earth, rather than from mean sea level. By this measure, Ecuador’s Chimborazo is taller than Everest. An asterisk is warranted for even this basic claim.

Of much less prominence on the globe, but also a tricky superlative to nail down, is the most densely populated island in the world. A handful of the perhaps 100,000 islands on Earth have stratospheric population densities: Ultra-crowded islands exist in places as disparate as Kenya, Hong Kong, France, and the Maldives, but it’s regularly cited that, by the numbers, the densest of all is Santa Cruz del Islote, a 3-acre islet of about 1,200 people off the coast of Colombia. This claim has been repeated in numerous publications, most recently by The New York Times, and it’s even the subject of a short documentary. Journalists usually emphasize the bonds of family and community in a place so radically removed from western consumerism.

All of which makes for an uplifting read about a fascinating place. But what if the premise is wrong? I can’t comment on the experience of life on the island. But we’ve already learned to be wary of superlative claims, especially when westerners are the ones keeping score; what about this one? What if this is merely a very crowded island, and not the most crowded island?
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Blockchain Just Isn’t As Radical As You Want It To Be

Block chain concept. 3D illustration

Rachel O’Dwyer | An essay originally anthologized in Ours To Hack and To Own: The Rise of Platform Cooperativism, A New Vision for the Future of Work and a Fairer Internet | OR Books | August 2017| 6 minutes (1,600 words)

* * *

The current rhetoric around the blockchain hints at problems with the techno-utopian ideologies that surround digital activism.

A blockchain is essentially a distributed database. The technology first appeared in 2009 as the basis of the Bitcoin digital currency system, but it has potential for doing much, much more—including aiding in the development of platform cooperatives.

Traditionally, institutions use centralized databases. For example, when you transfer money using a bank account your bank updates its ledger to credit and debit accounts accordingly. In this example, there is one central database and the bank is a trusted intermediary who manages it. With a blockchain, this record is shared among all participants in the network. To send bitcoin, for example, an owner publicly broadcasts a transaction to all participants in the network. Participants collectively verify that the transaction indeed took place and update the database accordingly. This record is public, shared by all, and it cannot be amended.

This distributed database can be used for applications other than monetary transactions. With the rise of what some are calling “blockchain 2.0,” the accounting technology underpinning Bitcoin is now taking on non-monetary applications as diverse as electronic voting, file tracking, property title management, and the organization of worker cooperatives. Very quickly, it seems, distributed ledger technologies have made their way into any project broadly related to social or political transformation for the left—“put a blockchain on it!”— until its mention, sooner or later, looks like the basis for a dangerous drinking game. On the other side of things, poking fun at blockchain evangelism is now a nerdy pastime, more enjoyable even than ridiculing handlebar moustaches and fixie bicycles. Read more…