Sign On the Dotted Line to Ensure Your Own Destruction

When small business loans from traditional banks dried up in the financial crisis, people like David Glass of Yellowstone Capital stepped into the breach with usurious loans, structured as cash advances to get around lending regulations, with triple-digit interest rates. And when borrowers can’t repay them — and sometimes even when they can — these lenders take advantage of some arcane New York state law to seize their assets. It’s ruthless, destructive, and completely legal, and Zachary R. Mider and Zeke Faux explain it all at Bloomberg Businessweek. 

In August, Bush closed his business, laid off his 20 employees, and stopped making payments on his loans. Yellowstone never filed its signed confession in court, but other lenders went after him over theirs. One sunny day that month, he walked to a wooded area near his home, swallowed a bottle of an oxycodone painkiller, and began streaming video to Facebook. To anyone who might have been watching, he explained that he’d taken out cash advances in a failed attempt to save his business. Now the lenders had seized his accounts, Bush said, his voice wavering. One had even grabbed his father’s retirement money.

“I signed ’em, I take the blame for it,” he said. “This will be my last video. I am taking this on me.” He asked his friends to take care of his family, then sobbed as he told his wife and teenage son he loved them.

Someone who saw the video alerted the police. They found Bush unconscious in the woods a few hours later—he credits them with saving his life. But the pressure from his confessions of judgment hasn’t relented. “I wake up every morning afraid what else they will take,” he says. “And every morning I throw up blood.”

Bush’s contracts with Yellowstone show that the company advanced him a total of about $250,000 and that he paid them back more than $600,000. Davis, who parted ways with Yellowstone in August, says he didn’t mistreat Bush or other borrowers and always followed the company’s protocols. “You know why people put the blame on me is because I’m successful,” he says. “It’s just haters.”

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Preserving Human Life Requires Preserving Insect Life

I get it. No one want gnats swarming their face while camping. They don’t want some many-legged thing scurrying around anywhere near them. But insects serve an essential ecological function despite their occasional irritations. For The New York Times Magazine, Brooke Jarvis explains insects’ shocking disappearance around the world and the dire consequences.

Even though science has identified a million insect species, millions more species likely remain undiscovered, though we may never find them before they go extinct. What that means is we have only a thin baseline by which to measure current changes to insect populations, and the generational reduction of life’s sheer quantity gives human beings an erroneous sense of normalcy. This is called “shifting baseline syndrome,” the sense that our depauperate world is how the world has always been. It is not. Disappearing insects are about so much more than insects.

In addition to extinction (the complete loss of a species) and extirpation (a localized extinction), scientists now speak of defaunation: the loss of individuals, the loss of abundance, the loss of a place’s absolute animalness. In a 2014 article in Science, researchers argued that the word should become as familiar, and influential, as the concept of deforestation. In 2017 another paper reported that major population and range losses extended even to species considered to be at low risk for extinction. They predicted “negative cascading consequences on ecosystem functioning and services vital to sustaining civilization” and the authors offered another term for the widespread loss of the world’s wild fauna: “biological annihilation.”

It is estimated that, since 1970, Earth’s various populations of wild land animals have lost, on average, 60 percent of their members. Zeroing in on the category we most relate to, mammals, scientists believe that for every six wild creatures that once ate and burrowed and raised young, only one remains. What we have instead is ourselves. A study published this year in the Proceedings of the National Academy of Sciences found that if you look at the world’s mammals by weight, 96 percent of that biomass is humans and livestock; just 4 percent is wild animals.

We’ve begun to talk about living in the Anthropocene, a world shaped by humans. But E.O. Wilson, the naturalist and prophet of environmental degradation, has suggested another name: the Eremocine, the age of loneliness.

Wilson began his career as a taxonomic entomologist, studying ants. Insects — about as far as you can get from charismatic megafauna — are not what we’re usually imagining when we talk about biodiversity. Yet they are, in Wilson’s words, “the little things that run the natural world.” He means it literally. Insects are a case study in the invisible importance of the common.

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The Californians Who Can’t Budge

Thousands of people have fled their California communities in the face of rampant, destructive wildfires. But not everyone in the fires’ paths left. At Slate, April Glaser spends time with people who wouldn’t or couldn’t leave their homes — because they had loved ones who couldn’t move, because they wanted to try to save their homes, because the fires bore down too fast, because if they leave now they won’t be allowed back — and are trying their best to protect their families and communities.

“Time is different for me right now,” said Jeff Evans, who prevented fires from engulfing his home, where he remains now with parents Chuck, 91, and Janet, 82. Living with them are eight dogs Jeff rescued from all over their backcountry town of Concow, plus three dogs of his own. The Evanses are surviving off of a gas-guzzling generator. Jeff described how on the day the fire started, after things had calmed enough that Chuck could take care of any spot fires still threatening the property, he canvassed the area to look for others who could use assistance: “So I said I’m going to go up the road and see if I can help anybody. So, I went up Hoffman Road, and you saw the vehicles there on the side of the road?”

I did see the cars. They were lined up on the shoulder, adjacent to a lake, and had pink plastic ribbons tied to their side mirrors. Those ribbons, Evans told me, meant that there were no bodies inside and no need for further inspection. “That’s where most of the dogs came from—those cars,” he said. The cars parked there were abandoned with their keys inside by people fleeing their homes only to drive straight into a firestorm that was barreling down Concow Road, forcing them to jump into the lake and swim across for refuge.

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Leaving Barrio 18

At The Intercept, Danielle Mackey writes about what it’s like for young El Salvadoreans to try and leave gangs like MS-13 or Barrio 18. Of the four young people she followed, one is in hiding, one is being forced to buy her child’s safety with criminal favors, and one has been murdered.

Kids like Benjamin try to leave their gangs by hiding in plain sight. They bury their pasts and attempt to start over. They do it in myriad ways and so well that often they’re even unaware of each other. Alone, they shed skin like any wild creature and take on a new identity.

But their needs are akin to those of child soldiers or war veterans — and the devastating cruelty wrought by gangs leaves little public will to provide that kind of support. As a result, the process is like burrowing through a boulder with a screwdriver. Exhausting. Seemingly impossible. You sweat it out alone.

Benjamin, who joined Barrio 18 at age 12, is the fourth. He managed to negotiate a retirement from the gang, but it’s not an easy or peaceful one.

The first thing Benjamin did on his first morning of freedom was smoke pot. “Habit,” he told me. Also terror. Still in bed, he burned through five blunts, paralyzed by a refrain: “What will come of me?”

Every day of the past decade of his life had been determined by the gang. The gang’s interests were his duties, its members were his peers. The gang’s risks were his and its forms of protection were too. But not anymore. He didn’t even have a place to live; he had woken up in the gang house, and today he must leave. Then, a scarier thought: There was a trade-off implicit in his decision. Yesterday he had an identity, but today he had freedom.

He bounced between hostels until just before Christmas, when he found an affordable apartment in an old brick structure near the National University of El Salvador, four stories tall and packed with people. He was relieved to have a room. He needed to lock himself in it for protection from former enemies and police — “people who want me dead” — but also from himself. He had spent most days high on marijuana or acid or cocaine before leaving the gang, and his zealous new evangelical identity prohibited drugs, so he was antsy to wean himself off them. He needed to whittle himself down to his acceptable parts, his holy parts.

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The Queer Generation Gap

Soraya Roberts | Longreads | November 2018 | 10 minutes (2,422 words)

Should I be married to a woman? If today were yesterday, if all this sexual fluidity were in the discourse when I was coming of age in the ‘90s, would I have been with a woman instead of a man? It is a question that “The Bisexual” creator Desiree Akhavan also poses in the second episode of her Hulu series, co-produced with Channel 4 because no U.S. network wanted it. Akhavan directed, co-wrote, and stars in the show in which her character, Leila, splits with her girlfriend of 10 years, Sadie (Maxine Peake), and starts having sex with men for the first time. So, Leila asks, if the opposite had happened to her — as it did to me — and a guy had swept her off her feet instead of a woman, would things have turned out differently? “Maybe I would’ve gone the path of least resistance,” Leila says. Maybe I did.

This is a conundrum that marks a previous generation — one that had to “fight for it,” as Akhavan’s heroine puts it, and is all the more self-conscious for being juxtaposed with the next one, the one populated by the fluid youth of social media idolizing the likes of pansexual Janelle Monáe, polyamorous Ezra Miller, undecided Lucas Hedges. Call it a queer generation gap (what’s one more label?). “I don’t know what it’s like to grow up with the Internet,” 32-year-old Akhavan explains to a younger self-described “queer woman” in her show. “I just get the sense that it’s changing your relationship to gender and to sexuality in a really good way, but in a way I can’t relate to.”

***

This Playboy bunny is chest out, lips open, legs wide. This Playboy bunny is every other Playboy bunny except for the flat hairy chest because this Playboy bunny is Ezra Miller. The star of Fantastic Beasts: The Crimes of Grindelwald calls himself “queer” but it’s hard to take him seriously. What was it Susan Sontag said: it’s not camp if it’s trying to be camp? And for the past few months, while promoting the Potterverse prequel no one asked for, this 26-year-old fashionisto has been trying his damndest, styling himself as a sort of latter day Ziggy Stardust — the monastic Moncler puffer cape, the glittering Givenchy feathers — minus the depth. Six months ago, Miller looked like every other guy on the red carpet and now, per his own request, models bunny ears, fishnets, and heels as a gender-fluid rabbit for a randy Playboy interview. Okay, I guess, but it reads disingenuous to someone who grew up surrounded by closets to see them plundered so flagrantly for publicity. Described as “attracted to men and women,” Miller is nevertheless quoted mostly on the subject of guys, the ones he jerked off and fell in love with. He claims his lack of romantic success has lead him to be a polycule: a “polyamorous molecule” involving multiple “queer beings who understand me as a queer being.”

The article hit two weeks after i-D published a feature in which heartthrob Harry Styles interviewed heartthrob Timothée Chalamet with — despite their supposed reframing of masculinity — the upshot, as always, being female genuflection. “I want to say you can be whatever you want to be,” Chalamet explains, styled as a sensitive greaser for the cover. “There isn’t a specific notion, or jean size, or muscle shirt, or affectation, or eyebrow raise, or dissolution, or drug use that you have to take part in to be masculine.” Styles, on brand, pushes it further. “I think there’s so much masculinity in being vulnerable and allowing yourself to be feminine,” the 24-year-old musician says, “and I’m very comfortable with that.” (Of course you are comfortable, white guy…did I say that out loud?) As part of the boy band One Direction, Styles was marketed as a female fantasy and became a kind of latter-day Mick Jagger, the playboy who gets all the girls. His subsequent refusal to label himself, the rumors about his close relationship with band mate Louis Tomlinson, and the elevation of his song “Medicine” to “bisexual anthem”– “The boys and the girls are in/I mess around with them/And I’m OK with it” — all build on a solid foundation of cis white male heterosexuality.

Timothée Chalamet’s sexuality, meanwhile, flows freely between fiction and fact. While the 22-year-old actor is “straight-identifying,” he acquires a queer veneer by virtue of his signature role as Call Me by Your Name’s Elio, a bisexual teen (or, at least, a boy who has had sex with both women and men). Yet off screen, as Timothée, he embodies a robust heterosexuality. On social media, the thirst for him skews overwhelmingly female, while reports about his romantic partners — Madonna’s daughter, Johnny Depp’s daughter — not only paint him straight but enviably so. Lucas Hedges, another straight-identified actor who plays gay in the conversion therapy drama Boy Erased, somewhat disrupts this narrative, returning fluidity to the ambiguous space it came from. The 21-year-old admitted in an interview with Vulture that he found it difficult to pin himself down, having been “infatuated with” close male friends but more often women. “I recognize myself as existing on that spectrum,” he says. “Not totally straight, but also not gay and not necessarily bisexual.” That he felt “ashamed” for not being binary despite having a sixth-grade health teacher who introduced him to the range of sexuality suggests how married our culture is to it.

As a woman familiar with the shame associated with female sexuality, it’s difficult to ignore the difference in tenor of the response to famous young white males like Miller, Styles, and Chalamet and famous black women like Janelle Monáe and Tessa Thompson not only discussing it, but making even more radical statements. Appearing on the cover of Rolling Stone in May, Monáe said straight up (so to speak): “Being a queer black woman in America — someone who has been in relationships with both men and women — I consider myself to be a free-ass motherfucker.” The same age as Desiree Akhavan, 32, Monáe identified as bisexual until she read about pansexuality. She initially came out through her music; her album, Dirty Computer, contains a song called “Q.U.E.E.N.” which was originally titled “Q.U.E.E.R.,” while the music video accompanying “Pynk” has actress Tessa Thompson emerging from Monáe’s Georgia O’Keeffe-esque pants. While neither one of them has discussed their relationship in detail, Thompson, who in Porter magazine’s July issue revealed she is attracted to men and women, said, “If people want to speculate about what we are, that’s okay.”

The mainstream press and what appeared to be a number of non-queer social media acolytes credited Chalamet and Styles with redefining their gender and trouncing toxic masculinity. “[H]arry styles, ezra miller, and timothee chalamet are going to save the world,” tweeted one woman, while The Guardian dubbed Miller the “hero we need right now.” Monáe, meanwhile, was predominantly championed by queer fans (“can we please talk about how our absolute monarch Janelle Monáe has been telegraphing her truth to the queers thru her art and fashion for YEARS and now this Rolling Stone interview is a delicious cherry on top + a ‘told u so’ to all the h*teros”) and eclipsed by questions about what pansexual actually means. While white male fluidity was held up as heroic, female fluidity, particularly black female fluidity, was somehow unremarkable. Why? Part of the answer was recently, eloquently, provided by “Younger” star Nico Tortorella, who identifies as gender-fluid, bisexual, and polyamorous. “I get to share my story,” he told The Daily Beast. “That’s a privilege that I have because of what I look like, the color of my skin, what I have between my legs, my straight passing-ness, everything.”

***

When I was growing up sex was not fun, it was fraught. Sex was AIDS, disease, death. The Supreme Court of Canada protected sexual orientation under the Charter when I was 15 but I went to school in Alberta, Canada’s version of Texas — my gym teacher was the face of Alberta beef. In my high school, no one was gay even if they were. All gender was binary. Sex was a penis in a vagina. Popular culture was as straight, and even Prince and David Bowie seemed to use their glam sparkle to sleep with more women rather than fewer. Bisexual women on film were murderers (Basic Instinct) or sluts (Chasing Amy) and in the end were united by their desire for “some serious deep dicking.” I saw no bisexual women on television (I didn’t watch “Buffy”) and LGBTQ characters were limited (“My So-Called Life”). Alanis Morissette was considered pop music’s feminist icon, but even she was singing about Dave Coulier. And the female celebrities who seemed to swing both ways — Madonna, Drew Barrymore, Bijou Phillips — were the kind who were already acting out, their sexuality a hallmark of their lack of control.

“I think unrealistic depictions of sex and relationships are harmful,” Akhavan told The New York Times. “I was raised on them and the first time I had sex, I had learned everything from film and television and I was like ‘Oh, this isn’t at all like I saw on the screen.’” Bisexuality has historically been passed over on screen for a more accessible binary depiction of relationships. In her 2013 book The B Word: Bisexuality in Contemporary Film and Television, Maria San Filippo describes what has become known as “bisexual erasure” in pop culture: “Outside of the erotically transgressive realms of art cinema and pornography, screen as well as ‘real life’ bisexuality is effaced not only by what I’ve named compulsory monosexuality but also by compulsory monogamy,” she writes, adding, “the assumption remains that the gender of one’s current object choice indicates one’s sexuality.” So even high-profile films that include leads having sex with both genders — Brokeback Mountain, The Kids Are All Right, Blue Is the Warmest Color, Carol, Call Me By Your Name — are coded “gay” rather than “bi.”

Despite the rise in bisexual women on the small screen like Annalise in “How to Get Away with Murder,” Syd in “Transparent,” and Ilana in “Broad City,” GLAAD’s latest report on inclusion cited continued underrepresentation. While 28 percent of LGBTQ characters on television are bisexual, the majority are women (75 versus 18) and they are often associated with harmful tropes — sex is used to move the plot forward and the characters scan amoral and manipulative. This despite an increase in the U.S.’s queer population to 4.5 percent in 2017 from 3.5 percent in 2012 (when Gallup started tracking it). A notable detail is the extreme generational divide in identification: “The percentage of millennials who identify as LGBT expanded from 7.3% to 8.1% from 2016 to 2017, and is up from 5.8% in 2012,” reported Gallup. “By contrast, the LGBT percentage in Generation X (those born from 1965 to 1979) was up only .2% from 2016 to 2017.”

Here’s the embarrassing part. While I am technically a millennial, I align more with Generation X (that’s not the embarrassing bit). I am attracted more to men, but I am attracted to women as well yet don’t identify as LGBTQ. How best to describe this? I remember a relative being relieved when I acquired my first boyfriend (it was late). “Oh good, I thought you were gay,” they said. I was angry at them for suggesting that being gay was a bad thing, but also relieved that I had dodged a bullet. This isn’t exactly the internalized homophobia that Hannah Gadsby talked about, but it isn’t exactly not. My parents and my brother would have been fine with me being gay. So what’s the problem? The problem is that the standard I grew up with — in the culture, in the world around me — was not homosexuality, it was heterosexuality. I don’t judge non-heterosexual relationships, but having one myself somehow falls short of ideal. For the same reason, I can’t shake the false belief that lesbian sex is less legitimate than gay sex between men. The ideal is penetration. “That’s some Chasing Amy shit,” my boyfriend, eight years younger, said. And, yeah, unfortunately, it is. I have company though.

In a survey released in June, billed as “the most comprehensive of its kind,” Whitman Insight Strategies and BuzzFeed News polled 880 LGBTQ Americans, almost half of whom were between the ages of 18 and 29, and found that the majority, 46 percent, identified as bisexual. While women self-described as bi four times as often as men (79 to 19 percent), the report did not offer a single clear reason for the discrepancy. It did, however, suggest “phallocentrism,” the notion that the penis is the organizing principle for the world, the standard. In other words, sex is a penis in a vagina. “While bisexual women are often stereotyped as sleeping with women for male attention, or just going through a phase en route to permanent heterosexuality,” the report reads, “the opposite is presumed of bisexual men: that they are simply confused or semi-closeted gay men.” This explains why women who come out, like Monáe and Thompson, are considered less iconoclastic in the popular culture than men who even just make vague gestures towards fluidity — the stakes are considered higher for the guys. In truth, few feel comfortable being bi. Though the Pew Research Center’s survey of queer Americans in 2013 revealed that 40 percent of respondents identified as bisexual, this population was less likely to come out and more likely to be with a partner of the opposite sex. Famous women like Maria Bello, Cynthia Nixon, and Kristen Stewart have all come out, yet none of them really use the label.

“Not feeling gay enough, that’s something I felt a lot of guilt over,” Akhavan told the Times. It is guilt like this and the aforementioned shame which makes it all the more frustrating to watch the ease with which the younger generation publicly owns their fluidity. It is doubly hard to watch young white men being praised for wearing bunny ears in a magazine that has so long objectified women, simply because the expectations are so much lower for them. “I’m not looking down on the younger experience of being queer,” Akhavan said, “but I do think that there’s a resentment there that we gloss over.” In response, many of us react conservatively, with the feeling that they haven’t worked for it, that it is somehow less earned because of that. This is an acknowledgment of that resentment, of the eye rolling and the snickering with which we respond to the youth (ah, youth!). In the end we are not judging you for being empowered. We are judging ourselves for not being empowered enough.

* * *

Soraya Roberts is a culture columnist at Longreads.

But Who Gets Custody of the Dog?

America is an uneasy amalgam of people with very different ideas of what government — and life — should look like. So what if we codified the political and cultural divisions that already exist? Secession is one option, but almost no one actually wants that. The U.S. Constitution provides another mechanism that would allow a constructive split while still maintaining a federal government: interstate compacts.

In New York Magazine, Sasha Issenberg walks us through what that version of the U.S. might look like. Some of it’s great. Some of it’s not. All of it’s fascinating.

It was not just manufacturing and resource extraction that boomed in the Red Fed. As soon as the Blue Fed established its single-payer system, medical specialists began taking their practices to states where they wouldn’t be subject to the Regional Health Service’s price controls or rationing. Sloan Kettering now treats New York as little more than an administrative base; the majority of its hospital rooms are in Texas. Johns Hopkins considered closing its medical school when nearly half the faculty decamped en masse to Baylor. Wealthy Blue Fed residents willing to pay out of pocket now invariably travel to Houston when they want an immediate appointment with a specialist of their choice. The arrivals area at the George Bush Intercontinental Airport is packed with chauffeurs from van services run by clinics supported by specializing in such medical tourism.

Auctions of public lands across the interior west, along with the privatization of the Tennessee Valley Authority, generated a quick gusher of cash. Vowing not to let the new government wealth create more bureaucracy, Red Fed leaders deposited it all in a Free States Energy Trust Fund that would pay out an annual dividend to every adult and child in the region — a no-strings-attached cash transfer of hundreds of dollars per year. The Southern Baptist Convention encouraged its members to tithe their dividend checks directly into new aid societies to help the least fortunate. The most popular charitable cause has been a relief society to aid religious conservatives in the Blue Fed seeking to migrate to the Red Fed.

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A Stimulus Plan for the Mutual Aid Economy

Livia Gershon | Longreads | November 2018 | 9 minutes (2,142 words)

If you’re a highly educated white man without serious disabilities—a description that, not incidentally, fits a large majority of people who make and write about policy in the United States—the economy probably looks like this to you: a web of financial transactions between individuals and companies, with support and guidance from the government. To Leah Lakshmi Piepzna-Samarasinha—a disabled, chronically ill writer and performer—it looks completely different. “Your life is maintained by a complex, non-monetary economy of shared, reciprocal care,” she writes in her new book, Care Work. “You drop off some extra food; I listen to you when you’re freaking out. You share your car with me; I pick you up from the airport. We pass the same twenty dollars back and forth between each other.”

Throughout the book, Piepzna-Samarasinha details how activists in the disability justice movement, led largely by LGBTQ people of color, support and advocate for one other. She describes a neurodivergent person bringing shawarma orders to a social justice conference, crowdfunding campaigns to pay for rehabilitation, and collectively-written best-practice guidelines for closed captioning. When wildfires hit California last year, she writes, “Over and over, it was sick and disabled folks—particularly folks with chemical injuries, environmental illness, asthma, and other autoimmune conditions who had been navigating unsafe air for years—sharing the knowledge that being sick and disabled had already taught us.”

From the usual perspective of policymakers, all this might sound like barely a footnote to the larger systems that deliver the goods and services we depend on. But the labor that Piepzna-Samarasinha describes is, in fact, an integral part of the American economy. The AARP has estimated that the total value of unpaid care that family members and friends provided to adults with disabilities and illnesses in 2013, the last year it was counted, came to $470 billion. That’s more than two-and-a-half times Amazon’s total annual revenue, and it still only captures a fraction of the work we do for each other outside of paid labor. According to the American Time Use Survey, parents spend, on average, about an hour and a half per day taking care of their kids. If you imagine paying guardians $15 an hour, it would add up to $565 billion per year. (And that still only includes hands-on care, not all the hours we spend keeping an eye on the kids while catching up on email, cleaning up their messes, or trying to get back to sleep after waking up to feed a baby at 3 am.)

Collectively, we might place this labor into something called the mutual aid economy. Mutual aid—work we do for each other out of some combination of generosity and obligation, without money being exchanged—has always been central to societies. In the U.S. today, it’s particularly important in working-class, black, brown, and immigrant communities, where there’s not much cash to pay for Uber rides and emergency babysitters. Yet legislation to support those doing unpaid work is rare—and often controversial.

Policymakers’ neglect of the mutual aid economy causes enormous harm to those who give care—disproportionately women—and receive it.

In some ways, it may seem wrong to consider making soup for a sick friend, taking a disabled grandparent to the park, or playing with your own baby as work. These are often some of the most joyful ways we can spend time; these are activities that give our lives meaning. The trouble is, many—particularly the privileged and career-focused among us who influence public policy the most—lack a vocabulary to describe the labor of mutual aid. Given our market-oriented framework, anything we do for reasons other than money ends up looking either like consumption or like a way of making ourselves (and family members) more employable. Is playing yet another game of Chutes and Ladders with your little niece recreation, or is it a strategy to help her improve the rational thinking skills that will boost her future earnings? Really, of course, it’s neither. It’s part of a fundamental human drive to share emotional and material resources with the people around us. And that has economic relevance, too.

Policymakers’ neglect of the mutual aid economy causes enormous harm to those who give care—disproportionately women—and receive it. There’s a reason children under five are the most likely of any age group to be living in poverty: it’s often impossible for parents to provide necessary care while earning enough money to support their families. The AARP reported in 2015 that more than one in five people had retired earlier than planned to look after a family member, and caregivers aged 50 and older who leave the workforce to look after a parent end up losing an average of more than $300,000 in forgone income and benefits over their lifetimes.

Most caregivers say the work is stressful, and significant numbers report that it’s physically difficult or takes a toll on their health. Yet, according to Amy Goyer, a family and caregiving expert at AARP, many people see caring for their elders as “almost a given” no matter the costs. “You don’t complain about taking care of your loved ones, whether it’s your children or your spouse, or your parents,” she told me. Goyer has been caring for family members all her life. “It’s been financially crippling for me, but I would not change a thing,” she said. “I did what was important to me.”

***

The most obvious way to support care work is simply to pay people to do it. In some cases that’s exactly what happens. People with enough money have always been able to hire help, or to subsidize a family member devoted to caregiving full-time. Since the 1960s, disability rights activists have been pushing for laws and government programs to help people with disabilities live independently; their efforts led Medicaid agencies, the Veterans Administration, and some state and local programs to start paying personal care attendants to provide support with daily tasks like bathing and preparing meals. These programs have enabled some families to hire workers; in some cases, they have allowed family members to receive compensation for some of the care work that they might otherwise be doing for free.

But government agencies sometimes bar spouses or other household members from becoming paid caregivers. Such limitations seem to stem from a belief that spouses ought to provide care for free and that, if funds were available for some of the work that family members are already doing, interest in the program would overwhelm public budgets. (In practice, it turns out that this hasn’t actually been the case in the programs that do permit spouses to be designated care workers.)

In Maine this fall, voters had a chance to approve a referendum to create a universal home care benefit for seniors and people with disabilities. The measure, supported by a coalition of disability rights groups, unions, and community organizations, called for free home care for anyone who needs it, funded by a tax on people with incomes above $128,400. It would also have given home workers the opportunity to join a union and ensure that 77 percent of the program’s funds would be paid to care workers, as opposed to the agencies that employ them. But business groups, home care agencies, and, ultimately, all four of the state’s gubernatorial candidates came out against the measure. “The idea that we’re going to hit 60,000 Maine families and an untold number of small businesses is just going to be a disaster for our economy,” Newell Augur, the chair of a coalition of business and service-provider groups opposing the measure told Maine Public Radio. Opponents also disapproved of the universal nature of the benefit, which would mean that even wealthy seniors would receive public money. The bill was defeated. Organizers still hope to win a similar program through legislative methods, but for now Mainers—like most Americans—must continue cobbling together care for those who need it from extremely limited public and private programs and the generosity of individual caregivers.

We tend to consider paid caregivers as wage workers, but since they’re not just doing it for the money, advocating for themselves can be tricky.

Under Medicaid, family members and unrelated caregivers frequently report that administrators expect them to work more hours than they’re compensated for—and often, because they care about their clients, they do the work anyway. A 2015 study by researchers at the University of California backed up the hours discrepancy with data. “Caregivers are often expected to ‘gift’ hours of care above and beyond what is compensated by formal services,” they found. For example, “Sue,” a paid caregiver of a client with Parkinson’s and depression, told researchers she considered the client, “Jill,” like a sister. When a state budget crisis led Medicaid to cut the number of hours for which she was paid, she still made sure that Jill’s needs were met. But that meant neglecting her own. “Right now, I ask how am I supposed to survive?” she told the researchers. “I can’t have enough water to drink, and I am eating rice with fish sauce and that is still not enough.”

In economic terms, we tend to consider paid caregivers as wage workers, but since they’re not just doing it for the money, advocating for themselves can be tricky. That’s a problem that Caring Across Generations, one of the organizations behind the Maine ballot initiative, is taking on. Formed in 2011, Caring Across Generations advocates for public funding of long-term care and protections for care workers. “Systemically and culturally, we get away with kind of relying on that instinct of ‘Well, no matter what, you’ll kind of go through and sacrifice everything,’” Janet Kim, the communications director of Caring Across Generations, told me. “I think it’s a wonderful thing, our instinct to take care of one another, but we can be taken advantage of. When you look at the economics of it, it just doesn’t work.”

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Reluctance to support the mutual aid economy is baked into the U.S. tax structure, which encourages paid work outside the home rather than caring labor. The federal child tax credit and earned income tax credit, the two largest programs providing extra cash to families with children, are available only to working parents. And families can only get the maximum EITC if their earnings are quite low: A single mother with one kid can receive $3,461 if she makes between $10,180 and $18,660 a year. Above that income level, the benefit gradually phases out. In contrast, most other rich countries—including Canada, Japan, and almost all European Union nations—pay child benefits that directly compensate families for some of the extra demands of having children.

Piepzna-Samarasinha believes that preserving and expanding Medicaid and other benefits is crucial. Really, just about any policy that would put more money in the hands of working-class people, including those with disabilities, would help the mutual aid economy to thrive. The trouble is, the system as it exists spends a lot of its energy limiting care—rejecting applicants who don’t seem “disabled enough” even if they can’t get jobs, along with those who make too much money—and focusing on the dangers of fraud (which does exist, but is mostly committed by dishonest healthcare companies, not individual recipients). “It comes from a fundamental belief that disabled people are lying,” Piepzna-Samarasinha told me. “If the system were designed by disabled people it would look really different.” If she were in charge, a policy for the mutual aid economy would start by compensating caregivers for years of neglect: “Providing a kind of back-pay for those inadequate benefits could let people finally go to the dentist, or get physical therapy,” she said.

No one is truly independent, and that’s OK.

One policy idea that would guarantee support for disabled people and caregivers is a universal basic income. In a way, that’s the ultimate policy support for mutual aid—money paid to all of us, with the understanding that all of us do one kind of work or another that we’ll never receive a wage for.

That’s a wild dream, however, especially in a country where the Republican Party is continuing its efforts to cut Medicaid and the rest of the (already inadequate) structure for supporting caregiving. Democrats will likely be stuck largely playing defense at least until 2020. But it’s just such fantasies that have driven the disability justice movement this far. “It’s radical to propose choice in care,” Piepzna-Samarasinha explained. “The charity model is just ‘we’re going to give you these crumbs.’ There’s an underpinning, quite honestly, of ‘You’re really lucky to be alive. You don’t work. You can take what we give you.’”

Disabled people can show the rest of us that we all have things we can contribute to each other, whether we work for pay or not, Piepzna-Samarasinha added. No one is truly independent, and that’s OK. “We’re really taught that having needs is the worst thing in the world,” she said. “One way or another, everybody who’s sick and disabled comes to the place where you’re just like ‘OK, I have these needs, and it’s not the most horrible thing in the world to have them.’”

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Livia Gershon is a freelance journalist based in New Hampshire. She has written for the Guardian, the Boston Globe, HuffPost, Aeon and other places.

Editor: Betsy Morais

Fact-checker: Ethan Chiel