Search Results for: Business

America’s Covid Swab Supply Depends on Two Cousins Who Hate Each Other

Longreads Pick

“The pandemic brought the business opportunity of a lifetime to Puritan Medical Products of Guilford, Maine. But even a $250 million infusion from the U.S. government has done little to quell an epic family feud.”

Published: Mar 18, 2021
Length: 17 minutes (4,250 words)

Doctor Fentanyl

Longreads Pick

“George Otto was a respected family physician with a bustling clinic in the northwest corner of the city. But he had a secret: after hours, he was running a booming fentanyl business. The untold story of the doctor who fuelled a drug crisis.”

Source: Toronto Life
Published: Mar 22, 2021
Length: 19 minutes (4,824 words)

Stand By Your Dictator

Syrian President Bashar al-Assad (foreground L), his wife Asma visit the exhibition dedicated to French painter Claude Monet at the Grand Palais on December 11, 2010 in Paris at the end of their official visit in France. AFP PHOTO MIGUEL MEDINA (Photo credit should read MIGUEL MEDINA/AFP via Getty Images)

For some historical background on the war in Syria, read “The Graffiti Kids Who Sparked the Syrian War,” by Mark MacKinnon at The Globe and Mail.

Asma Assad, wife of Syrian dictator Bashar al-Assad, isn’t content to raise the kids while her husband oversees torture and violent attacks on his own citizens in a bid to squash a rebellion that has been ongoing for ten years. In this startling profile at 1843, Nicolas Pelham reveals that the London-born first lady of Syria has been ruthless in acquiring power, wealth, and influence at home with dubious “improvement” projects under a sham called the Syria Trust for Development, all while courting favor with the West, pretending to be someone other than a wife solely dedicated to her husband’s ongoing tyranny.

The UN gave up trying to count the war’s death toll in 2016, when it had already reached nearly half a million. More than 10m Syrians are refugees.

In the first year of the uprising she advertised for a gardener and spent £250,000 on furniture. To circumvent sanctions she sent her hairdresser shopping in Dubai and used an alias when ordering from Harrods.

As the war continued, Bashar became more ruthless. One Western diplomat recalls the slow escalation of violence – using artillery against civilians, then air raids, then barrel-bombs. “They would…use it once, there’d be an outcry, but not to the point of international intervention,” said the diplomat. “So they would roll it out, and that would become the new normal.” International condemnation of Bashar’s crimes grew, yet this incremental choking of Syria, rather than all-out attack, helped forestall intervention.

On August 21st 2013 new footage appeared, showing people in the rebel-held suburbs of Damascus with bubbles foaming at their noses and mouths, and their limbs jerking. Hundreds died. A UN investigation later confirmed that they had been killed by sarin, a nerve gas. It was the worst chemical-weapons attack anywhere since Saddam Hussein had gassed Kurds in Halabja in 1988.

The financial success and ruthless machinations have eroded Asma’s carefully cultivated image. “Some still love her, put her photo on their Instagram page. But most now perceive her as a sneaky greedy person,” said one Syrian businessman. These days, though, no one accuses Asma of failing to understand how Syria works.

Late last year residents of the Damascus neighbourhood where Asma lives noticed a surreal change in the landscape. An old statue depicting a lauded colonel was joined by a new one: a vast sculpture of a horse’s head, at the direction of Asma’s business associates. Locals complained about the extravagance. According to reports in Gulf newspapers, the authorities had the horse’s head removed. Hours later it was back. The message was clear: in post-war Syria, Asma calls the shots.

State media gives increasing air time to “the Lady of Jasmine”. Huge posters of her image have been spotted in her parents’ hometown of Homs, covering entire housing blocks. Uniquely for a Syrian First Lady, ministers have taken to displaying her portrait in their offices alongside Bashar’s.

Read the story

Out There I Have to Smile

Illustration by Ashanti Fortson

Heather Lanier | Longreads | March 2021 | 16 minutes (4,473 words)

 
A few years ago on a gorgeous June day, I found myself in a windowless bathroom with forget-me-not wallpaper, my butt on a toilet, without any good reason to be there. It was a standard mothering move. Beyond the door, I could hear my two small kids laughing and eating cereal, so I stayed in this little space, smartphone in hand. In an hour, I was headed to a bowling alley with my kids, both of whom could now walk through a doorway on their own. And this was a brilliant new development, not just for the 2-year-old who’d learned to walk at the standard age, but for the 4-year-old, Fiona, who’d spent the past three and a half years in physical therapy striving toward this lofty goal. Forty-five percent of people with Wolf-Hirschhorn syndrome walk, said the report when I first got her diagnosis. Her ability to walk meant I no longer had to consider wheelchair or stroller accessibility. Her ability to walk independently meant she could navigate the tight turns around a bowling ball return without having to steer a clunky walker. So I was taking my kids bowling, as soon as I stopped pretend-peeing and reading on my phone.

I was reading a friend’s blog post about a recent appointment with her counselor. As soon as she mentioned her son, who has the same chromosomal syndrome as my daughter, she began to cry. 

The therapist asked, “Why do you always cry when you talk about him in here?” 

In here was the therapist’s office, maybe a subdued room with sage walls and elephant statuettes. Out there, my friend pushed her 4-year-old son in a wheelchair. 

My friend looked up at the ceiling a moment and thought. Why do I always cry when I talk about him in here? The answer hit her, and she sobbed. She managed this sentence, eked out between heaving breaths: “Because … out there … when I’m talking … about him … I have to smile.”

I put my hand over my mouth. The windowless bathroom. The forget-me-not wallpaper. I burst into tears. 

* * *

For bodies that don’t fit into a certain mold, for bodies we call disabled, out there can be a treacherous space. Out there has steps where you need a ramp. Out there has strobe lighting that could make you seize. Out there writes stories over your body (she’s sad, broken, wrong) when you just need toilet paper. 

For parents of kids with disabled bodies, out there can be exhausting. It maintains chipper myths about babies that your child breaks. What’s with that feeding tube? It tosses questions at your feet like it’s throwing you something between flowers and rotten fruit. Why’s she so small? What happened? What’s wrong? You answer with a smile, or you answer with fatigue, or you turn your head because none of your business

Out there is risky. Your son might sit in a classroom led by a teacher who doesn’t believe he can learn. Or your daughter might need medical care from a doctor who thinks she’s a tragedy. 

Out there is inconvenient. The doorway isn’t wide enough for your adaptive stroller. The wood chips of the town’s only playground are terrible for wheelchairs. The librarian concludes public story time with a craft that requires scissors, and you must now serve as your child’s occupational therapist, back hunched, palms sweaty, enabling the arduous work of cutting paper.

Out there is not exactly designed for your kind. 

* I use both person-first and identity-first language in this essay. As a nondisabled person, I don’t have a right to claim an identity for someone, so I err on the side of identity-first language until I know a person’s preference — and my daughter hasn’t indicated one. I also use identity-first language to stand with disability activists who argue that linguistic acrobatics to avoid the word “disabled” are a manifestation of our culture’s ableism. We do not say, for instance, “I am a person with femaleness.” #saytheword

As a white, straight, cisgender, non-disabled woman, I must imagine how this sentiment holds true for other bodies. My experience as a caregiver to a kid with disabilities* has put me in the closest relationship to this truth. Out there is not designed for many. 

Which is why in here spaces are so delightful. And it’s why, especially in early parenting, I often lingered in them for longer than I needed. Idling in the bathroom. Struggling to leave the house. In here applies little pressure. In here asks no questions. In here often lets you and your kin be as you are.

In preschool, my daughter Fiona walked stiltedly. Her gait was not the smooth coordination of typical preschoolers. She slapped her right foot down, and her left foot followed pigeon-toed, afterthought more than intention. She sometimes held her arms out, and because she was nonverbal, she said, “Ahh, ahh,” plowing toward whatever caught her eye. When we were out there, people sometimes looked at her because she was adorable and magnetic and thrilled by life. And sometimes people followed her with a calibrating gaze. I could tell that they weren’t admiring the cuteness of youth but instead trying to answer the question, What’s wrong? 

“You’re lucky,” a pediatrician said to me during a routine checkup. “At least you know what’s wrong. Some parents don’t even know that.” He looked up from my kid, his eyes sharp with intensity, and nodded. “You know what I mean?” But it wasn’t a question. 

Nothing is wrong with my girl, I wanted to say.

No, of course not, the doctor might have corrected. Inside he’d likely think, Yes, of course there’s something wrong, and then he’d recite the long list of diagnoses in her medical file: epilepsy, hypotonia, hydronephrosis, scoliosis, developmental delay….

Things her medical file has never listed: loves coloring, loves cheese, rocks a Converse sneaker, appreciates jalapeños, finds the beat, will increase speed tenfold for a turn at the swing.

Wrong can slide too quickly into another concept: tragic. There’s a prevalent Hollywood cliché (which bears no resemblance to real-life statistics) that disabled people wish to die. I didn’t need a child with Wolf-Hirschhorn syndrome to spot this cliché; I’d noticed it years before I had Fiona. Million Dollar Baby: a female boxer triumphs in fight after fight only to break her neck, end up quadriplegic, and ask her coach to help her kill herself; he obliges. Me Before You: a grumpy guy in a wheelchair is hell-bent on committing suicide, then falls in love with his caregiver who tries to show him that life is worth living. He kills himself anyway, because, well, you know, wheelchairs. The films are dramatic expressions of the old, ableist assertion that I’d rather die than live like that. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth. What my friend and I have known, without ever knowing we’ve known, is that our culture judges the worth of our kids by judging our contentment. I hadn’t named this until I sat in the bathroom and read my friend’s blog post on my phone, but along with all the obstacles to surmount or circumnavigate or abandon, out there obliges us to offer our cheer. Are we happy? If so, then maybe the lives of our children aren’t tragic. Out there I have to smile. 

* * *

In The Spirit Catches You and You Fall Down, Anne Fadiman tells the story of Hmong child Lia Lee, who has severe epilepsy. It’s a highly lauded book, and for good reason. But midway through, Lia suffers a massive seizure, nearly two hours long, and goes from a happy, hyperactive child to a  mostly unresponsive quadriplegic. “Vegetative state,” the doctors said, and I cringed, eager for Fadiman to take the phrase to task. Because Fadiman had thus far done a beautiful job revealing the cultural biases of both the Hmong family and their Western doctors, I figured she’d unveil the ableism inherent in ever likening a human to a carrot or a beet. I thought of Martin Pistorius, who spent 12 years in an unmoving body that doctors assumed was also “as good as not there, a vegetable,” but as he says years later in his TED talk, “I was aware of everything.” 

Fadiman fails here. She doubles down on the doctors’ sentiment, offering this description of patients in so-called “vegetative states”: “pasty-skinned carcasses with slack mouths, hair like straw, bodies that smelled of urine even after they were bathed.” Carcasses. The word cuts. It describes shells in which humans once lived. It should not be used to describe actual humans, still living. Fadiman agrees with the family when they think Lia’s soul is gone.

At this point in the story, Fadiman pivots to the mother, oh the mother, and how she adapts to her child’s altered life. Fadiman paints some beautiful portraits. The mother lovingly washes her daughter once or twice a day. The mother wears her daughter in a hand-embroidered cloth carrier. The mother feeds her daughter spoonful after spoonful of rice and then kisses her rice-covered face. “Sometimes I thought: this is not so terrible,” writes Fadiman. Mid-page, I thought Fadiman might lean toward valuing Lia’s new, altered life. Admittedly, she’d do so through the trope of Lia’s gifts to nondisabled people. Look at how much love she brings her family. But gift is certainly better than carcass. 

Instead, Fadiman pivots: “But whenever I began to be lulled by this relatively rosy picture, I was drawn up short by an explosion of rage from [the father] or, more frequently, by a sudden seepage of grief from [the mother].” The parents’ feelings tip the scales. Fadiman can’t see the value of Lia’s life if it brings not just love but suffering, if caring for Lia is not just a tender and physical act of love, but also a grief-stricken, arduous job.

Out there we all have to smile. 

* * *

Happiness is an encouraged performance in America whether you’re disabled or not. By analyzing photographs, Stanford psychology professor Jeanne Tsai found that U.S. leaders are over six times more likely to display “open, toothy smiles” than Chinese leaders. This same smile, what Tsai calls “the sign of American happiness,” also appears more frequently in American children’s stories and women’s magazines than in East Asian counterparts. “A lot of immigrants have talked to me about how exhausting it is being in the United States,” she told NPR reporter Maiken Scott of The Pulse, “because you have to smile all the time.” 

But the stakes of that performance are higher for disabled people and their caregivers. Princeton ethicist Peter Singer has kept his job even after arguing that parents of disabled babies should have the right to kill their kids. Because people with disabilities cause too much suffering, he says. 

The birth of a child is usually a happy event for the parents. …  It is different when the infant is born with a serious disability. Birth abnormalities … turn the normally joyful event of birth into a threat to the happiness of the parents and of any other children they may have.

Parents may, with good reason, regret that a disabled child was ever born. In those circumstances, the effect that the death of the child will have on its parents can be a reason for, rather than against, killing it.

Singer, whose book Practical Ethics is in its third edition, at one point suggests that his argument about murdering babies applies to disabilities that make a child’s life “so bleak” that it’s “not worth living.” (How would anyone determine a life “not worth living”? And who gets to decide such a thing?) But then he argues that hemophiliacs too could be justifiably killed in infancy because a woman will only have so many children, and the hemophiliac child might prevent her from having another, healthier baby. “It is … plausible to suppose that the prospects of a happy life are better for a normal child” than for a hemophiliac, he writes. 

I think of my college roommate, a gregarious extroverted gay man who competitively roller skated and also had hemophilia. While he blasted Latin pop through our kitchen and danced with joie de vivre and sang into a spatula, I, the “normal” non-hemophiliac person, brooded in my room to the tune of melancholy female artists like Tori Amos, while writing poems about romantic angst. Certainly, disability doesn’t determine happiness. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth.

But the bigger issue is this: Why should a person’s happiness — or lack thereof — be used in proving their right to live? And it’s not just Singer who delivers this message. Here’s disabled writer Nancy Mairs on the subject, from “On Being a Cripple”: “In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple isn’t playing by the rules. Early on I vowed that, if I had to have MS, by God I was going to do it well. This is a class act, ladies and gentlemen. No tears, no recriminations, no faint-heartedness.” 

You’ll hear parents of kids with disabilities negotiate this pressure to be happy all the time when they describe their children. “He has Down syndrome, and he’s nonverbal,” a father will say, “but he’s happy!” Or a mother will say, “She has cerebral palsy, and she doesn’t walk, but she’s brought us so much joy!” We can’t fault the parents. They add this caveat of happiness because they know it carries necessary currency. 

But this can be exhausting. It turns happiness into a rhetorical strategy, and makes the faces of disabled people and their caregivers a walking argument that should never have to exist in the first place. 


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* * *

During Fiona’s second year, I started a blog called Star in Her Eye. I wrote it because my child’s eyes were bursting with divine luminescence, and yet an unsmiling pediatrician called her a “bad seed.” I wrote the blog because parents at playdates were talking about babyproofing their outlets, and I was talking about the interesting sculptures at the cardiac unit of the children’s hospital. I wrote it because my girl was coming up with ingenious ways to communicate despite her verbal limitations, and yet because she didn’t babble, an early interventionist declared her “at zero.” I was in a very different field of parenting than the baby books described, and I needed to find my people. I also needed to write about ableism — how I was encountering it, how I was exhuming it from myself. A deep and abiding ethics guided my decisions about what to write and how, but I always wore the weight of my words. Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden. 

In December 2015, three years into the blog, the disability-themed online venue The Mighty published a satirical article called “Introducing: Meltdown Bingo.” In it, an autistic parent of an autistic child used a bingo card meme to make light of her son’s meltdowns. Readers were rightfully outraged, blasting the article for objectifying a kid’s suffering. (It was eventually taken down.) Critics also noted The Mighty’s slant toward publishing, as blogger Savannah Logsdon-Breakstone put it, “warrior mommy blogger content … focused on bemoaning how hard it is to parent a child with a disability. … This is a dangerous narrative.”  

The outrage fueled important conversations about disability representation (#CrippingTheMighty). But articles also popped up admonishing parents for writing about their kids at all. In an article published soon after, the advocacy website Ollibean suggested that parents should not write about their children if they aren’t able to offer consent, a principle that would eradicate the stories of certain intellectually disabled people, pushing them and their caregivers — disproportionately women — to the unwritten, invisible margins. During the years that I wrote the blog, Fiona could not offer me consent, and one of the things I often wrote about was our very efforts to help her communicate so she could loudly disagree with me. But that took time — many years with therapists and a speech device.

The challenges of parenting a disabled child — “the prejudice and ableism, fighting systems for an equal education, equal and accessible medical care, accessibility, insurance coverage for a new wheelchair or communication device,” the Ollibean article noted — are injustices built into a system that needs to change. This is 100% true. But the quote fell under the subheading, “It’s Not Your Disabled Child, It’s the System.” In other words, parenting a kid with disabilities isn’t ever hard because of the inherent difficulties of a disability. 

It was not hard, for instance, taking my infant daughter to a swallow study (to make sure she wasn’t dying from her own spit) and two kidney reflux exams (to make sure these vital organs weren’t at immediate risk of failure). It was not hard spending four years helping her learn to walk, or three years helping her tiny, fine-motor-limited fingers navigate a robust communication device so she could tell us what she wanted to eat. Likewise, it was not hard when my husband and I hovered over her body as she jerked in convulsions, her eyes pried open by erratic brain synapses, and it was not hard to check the clock while we did this. More than five minutes, and a seizure can cause brain damage. 

Of course it was hard. Or, it was not hard because hard is the word we use to describe cellophane-wrapped candy, while this is blade-sharp, a knife slicing through the gut. 

But if we can’t say it was hard, then how can we affect any change that would help people in power understand what kind of support we might need?

And yet, if I do say it was hard, then I am fueling, as Logsdon-Breakstone put it, “a dangerous narrative.” I’m risking the chance that people will see my kid, my glorious beautiful curly-haired feisty stubborn rascal of a kid, and think, That mom’s unhappy; that kid’s life is tragic

Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden.

My facial expressions out there are territory over which ideologies are fighting. My emotions out there have rhetorical power. And I will use everything I have to argue that my kid’s life has equal value to anyone else’s.

So I’ve smiled. Especially in those early years, I smiled at the nurse who called my kid’s name in the waiting room. I smiled as she led us to a room for X-rays. How cute, she said to my 38-inch 5-year-old in purple hospital jammies. I smiled after I unfolded Fiona’s walker with a loud click at the library, eliciting stares, and I smiled while the teacher talked me through Fiona’s low report card scores. 

It wasn’t a conscious thing, the smiling, until I read my friend’s story while sitting in the forget-me-not-wallpapered bathroom. But when happiness becomes a rhetorical move, it’s a lot less fun than regular happiness. “The freedom to be happy,” writes Sara Ahmed in The Promise of Happiness, “restricts human freedom if you are not free to be not happy.”

* * *

In “Special Olympics and the Burden of Happiness,” Lawrence Downes of the New York Times argues that Special Olympics doesn’t give itself the freedom to be unhappy either. Downes describes the hours-long medal ceremony at the 2015 World Games as a “cascade of triumphant moments” and a “carefully thought-out strategy” where music swells and the crowd cheers as athletes receive their awards. According to Downes, the organization intentionally uses joy as a rhetorical strategy to advocate for the healthcare, education, and other rights of people with intellectual disabilities. The article acknowledges the global plight of people with intellectual disabilities, many of whom are denied an education, sequestered in institutions, and suffer abuse and neglect. If Special Olympics is trying for a revolution of sorts, “its revolution is televised, happily,” writes Downes, “on ESPN.”

But Downes subtly critiques the efficacy of this strategy, calling Special Olympics “an organization so good at making its athletes and the public happy, so bursting with good will and smiles, that nobody has to take it seriously. It has waged a nearly 50-year battle for inclusion and acceptance for people with intellectual disabilities, and people still think it’s a track meet.”

In March 2009, President Obama told Jay Leno of The Tonight Show about his recent bowling score of 129. “It was like Special Olympics or something,” he said with a laugh. Before the show even aired, he was on the phone, apologizing to chairman Timothy Shriver. According to Shriver, Obama invited the athletes to the White House to school him in the sport and “help him improve his score.” If the silence in news reports is any indication, the match never happened.

* * *

Our bowling match did happen. I eventually wiped my tears and left the in here space of the forget-me-not bathroom. I drove my kids to the bowling alley, parked the car in a blue-painted spot, and hung the handicapped placard on the rearview mirror. One by one, I hauled my kids out of their car seats. I held their hands as we crossed the parking lot. I opened the glass door for them, and in they walked. Right through the door.

When we got into the lobby, my heart sank: The lanes about 50 meters ahead were dark like a nightclub. Red and blue and yellow laser beams flashed across the floor, the ball returns, the scoreboards, and the seats. Pop music blasted from above.

From the shoe rental desk, my friend Kristy, Fiona’s godmother, came to us with a worried expression. “I’m sorry,” she shouted over the music. “They just turned them on.”

I exhaled. Kristy had called in advance to be sure, and the guy on the other end had said no, they didn’t do laser bowling during the day. 

I paused, standing near the entrance, trying to figure out what to do. “It’s not like she’s had seizures from strobe lights before,” I said, recalling the EEG where a technician flashed a light in Fiona’s face and measured her brain waves. “It’s just … it’s a risk.” Further inside, I watched the laser lights spin around, casting erratic, broken-up rainbows. New seizure triggers can emerge without warning in people with Wolf-Hirschhorn syndrome.

We rented our shoes and paid for a lane. The red and blue and yellow beams swirled around us. Miley Cyrus blared. “You wanna go first?” Kristy shouted two feet from my face. Any farther and I wouldn’t have heard her. Her teeth glowed white from the blacklight. I went after Fiona, who was toddling down the lane, ready to walk its length. The bottoms of her Converse sneakers glowed. 

The place was mostly vacant. Had anyone seen us in the dark, they would have seen two adults and two kids having a leisure afternoon. They would have seen the adults center a kiddie ramp at the top of the lane and help the kids push their balls down the ramp. They would have seen the balls make their slow-rolling treks toward the pins and knock a few down. Yay! the onlookers would have heard Kristy and me say as we clapped. The kids sometimes clapped too, and sometimes turned around unfazed, heading for another spot in the darkness.

These onlookers probably wouldn’t have seen my furrowed brow, or my eyes, straining in the dark, to assess whether my daughter was having myoclonic blinks or jerks. They wouldn’t have seen me silently curse this bowling lane for turning a fun outing into a shitty, stressful event. 

Neither would they have seen Fiona seize, because — thank God — she didn’t. And they probably would not have seen me smile much, either. But if I had smiled that day, it would have glowed bright as an incandescent bulb. 

* * *

In the summer of 2020, I published a memoir, Raising a Rare Girl. How could I write a book about Fiona that avoided the trap of the “my kid’s so happy” narrative? Because it turns out, my kid is happy — often exceedingly so. Fiona, now age 9, has way more joie de vivre than me. Though not yet a swimmer, she plows her body into ocean waves and screams with delight. She yawps for joy at the mention of Kit Kats. She is really, really stoked to go for walks around the block. She and my old college roommate would get along smashingly. And yet a story that emphasizes the “look, my kid is happy!” narrative would lodge her right into the very pressure Nancy Mairs identifies: “In our society, anyone who deviates from the norm had better find some way to compensate.” 

And how could I write a book that also avoided the “my kid is so hard” narrative? Because that’s true, too.

I tried to write a book that showed my daughter’s inherent value — and our culture’s denial of it — whether she was happy or not. I ended up writing a book about what it means to be human. “This belief in the virtue of the ‘happy’ and suffering-free life sterilizes and shrinks us,” I wrote toward the end, “minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy.” What I tried to do was show, honestly, the joy and the grief, the hard and the beautiful, and say: It all belongs. 

* * *

You ask: Am I happy? I say, sometimes less than before. Because she wakes six times a night. Because regular trips to pediatric specialists are no strolls through the park. Because special educators sometimes see her as broken, in need of fixing. Because her needs often exceed my energy. Because every time I’ve hovered above her convulsing body at night, counting the minutes, I might have gained something like courage or “life experience,” but I also felt gashed  in a bodily place that I can’t find, I can’t name. 

Because loving someone has never been so hard.

You ask: Am I happy? And I say, sometimes ten times more than before. Because her fine, blondish-brown hair brushes my cheek when we snuggle. Because her sapphire blue eyes seek out mine every day. Because at age 5, after three years of speech therapy, she at last made a hard C sound. Come, she said, and I did. Because when she was 4 and I asked which hat she wanted to wear, this one or that, she pointed and said “gamma!” (meaning “that one”) with such high-pitched glee that it felt like I held not a red wool ski cap but a lifetime supply of joy. Because the stress of a swallow study, the labor of an orthopedist’s appointment, and the fear of EEG results make the good news of a clear airway, an unchanged scoliosis curve, and an unworrying set of brain waves all the more glorious. 

Because loving someone has never been so hard.   

What I ask is that my answer doesn’t matter in determining her worth.

* * *

Heather Lanier’s memoir, Raising a Rare Girl, was a New York Times Book Review Editor’s Choice. Her recent essays appear in The Atlantic, The Wall Street Journal, and Off Assignment. She is an assistant professor of creative writing at Rowan University. You can find her on Instagram at @heatherklanier

Editor: Cheri Lucas Rowlands

Illustrator: Ashanti Fortson

Fact-checker: Nora Belblidia

Congratulations, You Now Own a Newspaper

ALASKA, UNITED STATES - 1994/01/01: USA, Alaska, Inside Passage, Skagway, Main Street. (Photo by Wolfgang Kaehler/LightRocket via Getty Images)

At Columbia Journalism Review, Lauren Harris reports on the gritty determination of Melinda Munson and Gretchen Wehmhoff, a duo who became the owners of the Skagway News in a give-away. The pair, who are taking the paper into the modern age, are committed to making the publication a success — despite the effects of Covid-19 on a tourist town dependent on visiting cruise ships to survive.

IN 2019, LARRY PERSILY, owner of the Skagway News, announced that he would give away his local Alaskan publication to a person or a pair demonstrating journalistic skill, self-motivation, grit, and—above all—affectionate dedication to the quirks and quiddities of rural small-town reporting. National news outlets picked up the story as a sort of lark, emphasizing the remote and small-town nature of Skagway, the rarity of the giveaway, and then, in a few short lines, the challenges of sustaining critical local news coverage. In such stories, Persily was a Willy Wonka figure, courting a successor.

Among the applicants were Melinda Munson and Gretchen Wehmhoff, teachers in the Anchorage area who cowrote a blog for Alaskan families. Munson and Wehmhoff envisioned a dream job not unlike that conjured in headlines: the freedom to write and the promise of a place in a tight-knit community. Over the course of months, Munson and Wehmhoff had several intense phone interviews with Persily; for some, they met in a room in the school building with the lights off, to avoid drawing the attention of their principal.

Persily took over the paper’s management in 2019, working from Anchorage—a distance of nearly eight hundred miles from Skagway, which he quickly came to believe was too far.

“You gotta be part of the town,” Persily says. “You gotta go to the basketball games. You gotta be a trusted part of the community.” He discounted applicants who envisioned doing the job “for a couple years” or who wondered about how much they could contribute annually to an IRA. “Small-town papers need small-town editors,” he says. “I wanted an owner who was going to live there happily ever after.”

GRETCHEN WEHMHOFF AND MELINDA MUNSON make a winning pair. Wehmhoff is garrulous and lively; Munson is eloquent and tempered. Munson writes and edits, in addition to managing childcare and remote schooling for six kids; Wehmhoff does everything else. Each shows an obvious faith in the other’s capabilities.

“Gretchen is a Renaissance lady: she can do layout, ads, business,” Munson says. “When Gretchen writes, she spits it out on the paper, then hands it to me to edit.”

“I wipe up a little bit of the spit,” Wehmhoff responds.

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When Death Came to Mauritius

TOPSHOT - An aerial view taken in Mauritius on August 17, 2020, shows the MV Wakashio bulk carrier, belonging to a Japanese company but Panamanian-flagged, that had run aground and broke into two parts near Blue Bay Marine Park. (Photo by - / AFP) (Photo by -/AFP via Getty Images)

On July 25th, 2020, the container ship MV Wakashio ran aground off the coast of Mauritius, an area known for “some of the world’s clearest lagoons, most pristine ecosystems, (and) healthiest fish.” The ship eventually broke in two, spilling oil into Point D’Esnay, contaminating the coastline’s vegetation and sea life. As Ariel Saramandi recounts in this essay at Granta, when the government failed to act quickly, the citizens of Mauritius took action. The community made booms to soak up oil and protested against government indifference and inaction — despite the threat of being arrested for criticizing the authorities.

We have our superlative reputation to protect, after all: some of the world’s clearest lagoons, most pristine ecosystems, healthiest fish. Tourism is the heart of the economy. The majority of the island’s most opulent hotels are found on the east coast. Plus, the government is heavily invested in the fishing industry. Our fish exports are a 250-million-dollar business, and parastatal fish farms dot the south-eastern lagoon. We are confident that the Wakashio will be removed imminently from the reef: it’s in the government’s self-interest. We hear talk of international assistance and are reassured.

Meanwhile, images show filaments of an oily substance on the shore. Then images show the ship beginning to tilt. The Minister of Fisheries said the photos ‘appeared to be manipulated and deceptive.’ ‘The ship is not sinking and will not sink,’ he said on 5 August 2020.6 All is under control.

The next day thick black streaks coat our lagoon. Oil like lacquer on the water.

Against all international recommendations, despite our outcry and outrage, the government sank half of the Wakashio in great haste on 24 August. Two days later, melon-headed whales washed up around the south-eastern coast. Dead, mutilated, glossy bodies. Authorities haul them onto the back of pickup trucks, tails hanging out. Authorities cover them in white sheets. Videos of dying whales bobbing helpless in the ocean. Video of a mother whale trying to nudge her dying baby above the waves so that it can breathe; she watches as it dies, then dies a little while later, too. Fishermen say the ship was sunk in a whale breeding ground, that some of the corpses they found were of pregnant females.

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The Untold History of America’s Zero-Day Market

Longreads Pick

“The lucrative business of dealing in code vulnerabilities is central to espionage and war planning, which is why brokers never spoke about it—until now.”

Source: Wired
Published: Feb 14, 2021
Length: 18 minutes (4,708 words)

Justin Townes Earl: The Saint of Lost Causes

Justin Townes Earle (Photo by Erika Goldring/Getty Images)

We saw him live once, almost exactly two years ago. Just one guitar, one man, and his heart, laid bare for all to see through his songs. Justin Townes Earle’s singular, percussive playing style was both rhythm and harmony to the melody of his voice at that small venue in the middle of a cold Canadian winter. When a string broke on his guitar on the first song, there was no tech to do the fix, no second guitar to reach for. Earle rummaged through a case, grabbed a spare string and made the change, chatting amiably with the audience the whole time. It felt like you could get to know him. We knew he’d struggled hard. You could hear it in his entire song catalogue. But of course, there was so much we didn’t know, couldn’t know, don’t deserve to know.

In this tribute for Rolling Stone, Jonathan Bernstein interviewed 30 people, including friends, former bandmates, and Justin Townes Earle’s widow, Jenn Marie Earle, who share what Justin meant to them, six months after his death. They paint a portrait of a generous and loving man, who was not able to offer that same generosity and love to himself.

Onstage, Earle was an electrifying presence: six-foot-four, dressed in vintage suits, playing in a fiery style of finger-picking he’d picked up listening to the bluesman Mance Lipscomb. He assumed the public persona of a world-weary troubadour, one worthy of his cursed namesake, the self-destructive country-folk genius Townes Van Zandt, a friend of his father.

Justin was locking himself inside a dark room off the basement for hours to write, communicating with Jenn Marie through a grate connected to the kitchen upstairs. “If you need me,” Justin would shout, “just stomp your hoof, my little dear.”

“I’d seen him starting to become more distant, in many ways,” Jenn Marie says. “That song, to me, was an admittance, of choosing the fate of being locked away from what means the most to you.” The album Justin was writing in that unlit basement study, the last album released while he was alive, would be called The Saint of Lost Causes. “I think he was admitting that he was defeated, in a lot of ways,” Jenn Marie says.

As the years passed, Earle’s insecurities grew. “There was a huge part of Justin that didn’t believe in himself,” says Jenn Marie. “He saw the music business changing. . . . When his [2014 and 2015 albums, Single Mothers and Absent Fathers] came out, he was disappointed they didn’t do so well. I think that’s where a lot of his darkness, his struggles with substance abuse and addiction, started to come to the surface in the last few years: him feeling like he wasn’t good enough.”

“We have for so long looked at people who had addiction problems … we ask them the wrong questions,” he said in 2018. “We say, ‘What is wrong with you?’ The problem is, they hurt. So you don’t ask them, ‘What’s wrong with you.’ You ask them, ‘Why do you hurt?’”

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All that Glitters

An illegal mining site in Madre de Dios, Peru / Ernesto Benavides for The Atavist

This is an excerpt from The Atavist‘s 10th anniversary story, “The Gilded Age” by award-winning reporter Scott Eden. Gold mined in the jungles of Peru brought riches to three friends in Miami—but it also carried ruin.

Scott Eden | The Atavist | January 2021 | 5 minutes (1,352 words)

 

The Atavist is Longreads‘ sister publication. For 10 years, it has been a digital pioneer in longform narrative journalism, publishing one deeply reported, elegantly designed story each month. Support The Atavist by becoming a magazine member.

In 1511, the king of Spain gave his New World explorers an order: Get gold, humanely if possible, but at all costs get gold. Humanely was not how it happened.

When gold was discovered on Hispaniola, the native population was forced into serfdom to mine it. Within a few decades, the Taino people had been almost completely “exterminated in the gold mines, in the deadly task of sifting auriferous sands with their bodies half submerged in water,” writes Eduardo Galeano in his seminal book Open Veins of Latin America. Rather than carry on, some of the enslaved people killed their children and then themselves. Francisco Pizarro’s men entered the Temple of the Sun in Cuzco, the Incan capital in modern-day Peru, and melted down breathtaking works of high-karat art because bars were easier to stack and transport back to Spain. Hernán Cortés did the same after he captured the Aztec treasure house. “They crave gold like hungry swine,” one Aztec observer said of European invaders. A conquistador named Hernán de Quesada, whose brother founded Bogotá almost incidentally while searching for El Dorado, also set off in search of the mythical golden city, taking 6,000 captured natives into the jungles and mountains of what is now Colombia. None survived.

Gold wasn’t the only metal the Spanish wanted. In Quechua, the language of the Inca, the mountain was called Sumaj Orko, “beautiful hill”—a perfectly shaped conical peak made almost entirely of silver that sits in present-day Bolivia. In 1573, colonists began conscripting indigenous people to toil in the mountain’s shafts, working under a form of forced labor known as the mita system. “It was common to bring them out dead or with broken heads and legs,” wrote a contemporary observer. The biggest boomtown in world history, Potosí, grew at the foot of Sumaj Orko; its population at one point rivaled Paris’s. Up to eight million people, many of them children, are estimated to have died working in Potosí’s mines.

Spain was merely a middleman for all the blood metal. The crown used its colonial spoils to pay off the massive debts it had accumulated in Europe’s banking houses. Gold and other precious metals financed the late Renaissance and, next, the industrial revolution.

The pillaging continued, bringing with it other forms of cruelty. In the 18th century, the miners who came to the Minas Gerais region of Brazil during a gold rush were also slave traders; they preferred buying their human beings from the West African slave port of Ouidah, because the people sold there were said to possess magical powers for divining the richest sources of gold. In 1886, after gold was discovered in Tierra del Fuego, a European engineer orchestrated a genocide there, exterminating the Selk’nam people, hunter-gatherers who had lived in the region for millennia. In the 20th century, General Augusto Pinochet abolished the rights of mine workers in Chile’s lucrative high-desert gold and copper pits. Vladimiro Montesinos, Peru’s murderous spy chief, allegedly took bribes from multinational mining corporations to help them secure control of Yanacocha, which in the 1990s was the world’s most productive gold mine.

By then a new kind of colonist had emerged in Peru. On foot, they came down from the Altiplano, from some of the poorest places on earth, migrating to low-lying rainforests where they’d heard gold was in the ground. They hoped that the tools and skills their forebears had used since time immemorial—shovels, portable sluice boxes—would help them find wealth.

They came to a remote department in the country’s southeast called Madre de Dios—Mother of God—that was covered almost entirely with dense jungle. In time, the new colonists earned enough money to rent heavy equipment. They could dig faster. There were no laws to stop them; squatter’s rights ruled. You took what you wanted. The miners began tearing down forests, clearing the way to search for the glittering flakes that could change a man’s life forever. Or end it.

Peru is the kind of place, in the words of one gold industry participant, ‘where you can do everything right and still get in trouble.’

There once was a sawyer who lived in the rainforest. His name was Alfredo Vracko Neuenschwander, but everyone called him Don Alfredo. He grew up in Madre de Dios. His father, also a logger, was an immigrant from Slovenia, but Don Alfredo treated the forest like he was a native. He took from it only what he and his family—a wife, a daughter, and two sons—needed to survive.

Don Alfredo was tall and slim, and he wore black horn-rimmed glasses that made him look like an Apollo mission engineer. His timber concession, which he obtained in 1975, was located in a part of Madre de Dios called La Pampa. To the west was the high sierra. To the east was the jungle, vaporous and immense. Don Alfredo and his family lived in a small compound—a house and a handful of outbuildings—in a one-hectare clearing he’d hacked out of the jungle. The roofs were thatch. There was no electricity. He’d built everything himself out of the wood—achihua, pashaco, copal, tornillo—found on the roughly 6,000 acres of his concession. His sawmill consisted of wooden poles propping up a metal roof over a large circular saw and an ancient planer manufactured by the American Saw Mill Machinery Co., in Hackettstown, New Jersey. Nearby was an orchard of yucca, papaya, banana, and cupuaçu, a football-shaped fruit with meat prized for its pear-like taste. Fat boas slid under the fruit trees. Flocks of oropendola birds shrieked in the canopy alongside howler monkeys.

For the better part of a decade, starting in 2007, Don Alfredo tried to save his land and the rest of La Pampa from informal gold mining. It was then, and remains today, an industry of wildcatters: people who don’t pay taxes, who don’t bother to seek government licenses or perform environmental-impact studies, who just start digging. Informal mining accounts for as much as 20 percent of the world’s newly extracted gold. In other words, up to one-fifth of the global gold business, worth more than $30 billion a year, according to some estimates, is a black market. And like all black markets, the illegal gold trade is vulnerable to the whole range of organized iniquity: bribery, human trafficking, money laundering, murder for hire, terrorism. The South American gold business is particularly fraught with these dangers, the Peruvian one perhaps most of all. It’s the kind of place, in the words of one industry participant, “where you can do everything right and still get in trouble.”

No one knew the ugly side of Madre de Dios better than Don Alfredo. On a sunny November day in 2015, he waited for the authorities to arrive. At his behest, they’d scheduled an interdiction—the Peruvian National Police would go into the jungle, find a mining site that Don Alfredo had recently reported, chase off or arrest the miners, and destroy their equipment with explosives.

Afternoon turned into evening. The police were delayed. The setting sun flared off the nearby Guacamayo, a stream that runs into the Rio Inambari, which flows into the Rio Madre de Dios (from which the region takes its name), which runs into the Beni, which joins the Mamore, which feeds into the Madeira—a tributary, at last, of the Amazon. Don Alfredo stood on the balcony of his home, listening for the sounds of arrival: the motors of police vehicles turning into his driveway off the Interoceanic Highway, which stretched from Rio de Janeiro to Peru’s Pacific coast. Completed a few years prior, the highway had transformed a series of rude dirt tracks and ancient footpaths into a modern thoroughfare navigable by trucks and heavy equipment, easing the way for miners to infiltrate ever more deeply into Madre de Dios.

Don Alfredo almost certainly would have heard the motorcycles approach, their rumble fainter than the phalanx of police vehicles he’d expected. The two bikes appeared on his property, carrying four riders. The men stopped in the driveway and dismounted. They were carrying guns and wearing black balaclavas.

Don Alfredo opened his mouth to scream.

 

Read the full story at The Atavist

Inside the Mind of Jeff Bezos

Longreads Pick

“The way that Amazon does business – its pressuring of suppliers, its systematic annihilation of retail competitors, its incessant harvesting of its customers’ data, its treatment of its own workers as little better than machines – is, of course, inseparable from the personal wealth of its founder, Jeff Bezos, who earlier this week stepped down as CEO of the company.”

Source: The Guardian
Published: Feb 3, 2021
Length: 27 minutes (6,816 words)