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An Interview with ‘Call Me By Your Name’ Author André Aciman

Andrè Aciman attends a screening of "Call Me by Your Name" during the 55th New York Film Festival in New York City. (Dia Dipasupil/Getty Images)

Jessica Gross | Longreads | November 2017 | 20 minutes (4,900 words)

I spend the first day in any new place, particularly when I’m traveling alone, feeling massively out of sorts and wondering if I should turn right back around and come home. By now, I know that by the end of my stay that initial despair will feel almost unreal. But last summer, on a trip to Vienna, my sense of dislocation was so acute I didn’t know if I’d last. I’d spent the long train ride over from Paris re-reading my great-grandmother’s autobiography—as told to my grandmother—which details my Jewish family’s flight from Vienna in 1938. Arriving in the city so many decades later, I still couldn’t shake the sense of terror they’d described. No matter how much I tried to talk myself down, I couldn’t seem to stop conflating the cold stares of the Austrians I passed on the street with the fact that this country had wanted my relatives dead.

So: It was fraught. Until, that is, a friend sent me an essay by André Aciman. In “Parallax,” the epilogue to his essay collection Alibis: Essays on Elsewhere, Aciman—a Jew and an exile from Egypt to Europe, who now lives in New York—writes of the dislocation that seems by now intrinsic to his personhood. He cannot, he writes, appreciate one place unless through the projection of another. “What we missed was not just Egypt. What we missed was dreaming Europe in Egypt—what we missed was the Egypt where we’d dreamed of Europe,” he writes. “Parallax is not just a disturbance in vision. It’s a derealizing and paralyzing disturbance in the soul—cognitive, metaphysical, intellectual, and ultimately aesthetic. It is not just about displacement, or of feeling adrift both in time and space, it is a fundamental misalignment between who we are, might have been, could still be, can’t accept we’ve become, or may never be.” I can’t remember whether reading this made me abruptly stop crying or, in the way that transcendent literature can, made me sob even harder.

Since then, I’ve read enough Aciman—a memoirist, essayist, and novelist—to know that dislocation is one of several central and vital themes. He also grapples with evasion of the present, and of pain; with ambivalence; and with desire. These last two are on particular display in his masterful novel Call Me by Your Name, which has now been adapted into a gorgeous film. Aciman expresses what it’s like to inhabit a human mind with more intricacy, subtlety and lyricism than almost any other writer I’ve read. We met at a café on the Upper West Side, where I tried to keep my reverence in check, and spoke about his distaste for realism, mitigating joy, trying to induce a sense of immersion in the reader, his respect for editors, and the new film. He began by telling me there was only one question I couldn’t ask: whether he thinks it did justice to the book.

Are there any other questions you absolutely loathe?

No.

How do you generally answer when people ask that question?

“I loved it!” Okay, now you’re asking the question. [Laughter] Okay, fine, I’ll answer.

As a writer, you have two choices. You can be very proprietary—in other words, you own the book, you own the story, and the movie has to follow, otherwise you get upset, you go crazy.

Or, you can say, “I’ve written the book. You want to make a movie, you want to make a play, you want to make an opera out of it? Do with it what you want. And if you want my opinion, I’ll give it to you; if you don’t want to hear it, I won’t give it to you.” I’m probably the easiest author to edit because I feel that an editor knows what they’re doing.  So if they say, “This sentence is horrible,” I’ll listen. I disagree one percent of the time. Read more…

Gossip and News, Strange Bedfellows

(Jason Merritt/FilmMagic)

On a recent episode of the Longform podcast, the hosts heaped praised on Jodi Kantor and her reporting for the bombshell Harvey Weinstein exposé. The episode was released the same day the New York Times published a story reported by Kantor, Melena Ryzik, and Cara Buckley in which five women accuse comedian Louis C.K. of sexual harassment and assault, a story that had existed in a similar whisper network among female performers for years.

The praise for Kantor, and for the investigations by the Times in general, reminded some listeners of Longform’s 2016 interview with Leah Finnegan, in which she spoke about her experience as an editor at Gawker. Host Aaron Lammer questioned Finnegan about a post published by Defamer in May of 2015, about Louis C.K.’s predatory behavior.

“Part of the reason I went to Gawker was that spirit of wanting to fuck shit up, being into gossip, wanting to talk about things people didn’t necessarily want to talk about,” Finnegan tells Lammer. She cites their stories about Bill Cosby, Louis C.K., and Fred Armisen — “recurring rumors about … men who do gross things” — as examples.

There are rumors that maybe have truth to them, but the Times would not report on them, because they can’t really nail it down. But Gawker will report on them. I think that that spirit is really important, saying what no one else will say, just so it’s out there.

Lammer responds with an oddly irrelevant bit of whataboutism. “Couldn’t you also say that Donald Trump is also saying what no one else will say?” He criticizes the Gawker post as “weird and thin, even for an allegation,” describing it as “some guy said his friend was in a backstage … with Louis C.K. and he whipped out his dick and asked her to do something with it.”

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How to Say You Maybe Don’t Want to Be Married Anymore

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Sarah Bregel | Longreads | November 2017 | 11 minutes (2,671 words)

I am peering out the screen door at the front entrance of my house. Anxious, I glance up and down the tree-lined street and then move to the back door to do the same. The dog follows my every move. I stop and stare at him, circle the dining room table twice, and start over. I’m practically panting, the same as he does when he chases his tail then flops on the carpet from exhaustion.

I’m listening for footsteps, to hear the gate click. I’m waiting desperately to catch a glimpse of my husband jogging up the road, dripping with sweat. For a brief moment I wonder if he has thrown himself into oncoming traffic.

I cannot stop pacing, cannot stop bobbing my head. It is heavy, a block of cement, weighing me down. I cannot eat, but I can drink wine. I have had the better part of a bottle already. I finish my glass, then fill it with water and chug it down three times, preparing for the worst come morning.

Our two small kids are downstairs watching TV. They’ve been planted there like eyes growing on the skins of potatoes for hours, and I have no plans to call to them and demand they shut it off. I can’t look at their faces for fear they might see through me. Later, I will dry my swollen eyes long enough to read bedtime stories and lay with them a while. I will say “Goodnight, sleep tight, don’t let the bedbugs bite.” I’ll close the door almost all the way then whisper through the crack, “There’s no bugs,” and slip out.

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Bootlegging Jane’s Addiction

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Aaron Gilbreath | Longreads | November 2017 | 26 minutes (6,465 words)

On a sunny day in 1989 when I was just 14, I heard Jane’s Addiction for the first time.

I was at my friend Nate’s house. As I sat on his bedroom’s itchy tan carpet, near the waterbed with the imitation leather rim, we watched their debut record spin. It was a live recording, and like many teenagers whose musical awakening came before the internet, we’d inherited it from a cooler elder — Nate’s sister’s boyfriend.

The album was recorded at a club called The Roxy, on the Sunset Strip. As a concert recording, some fans called it “the live album.” We called it “Triple X,” after the indie label that released it. Unlike other live records where applause fades in before the music starts, Triple X launched right in with no introduction: fast drums, soloing guitar, and a high-pitched banshee singer howling cryptic lyrics that went way over my 14-year-old head: “Oh, mama lick on me / I’m as tasty as a red plum / Baby thumb / Wanna make you love.” The song was called “Trip Away.” I had no idea what tripping was, but the music slayed me.

After a blazing crescendo, the audience clapped, seconds passed, and a slow bass line played a new rumbling melody. The drummer pounded a single beat over it: boom. Then two more ─ boom boom ─ building tension. The guitarist slid his pick down the guitar strings, smearing a wicked echo across the rhythm, then the banshee yelled “Goddamn!” and broke into “Whores.” “I don’t want much man, give a little / I’m gonna take my chances if I get ’em. Yeah!”

To a middle class kid in Phoenix, Arizona, this music had a primal abandon that I hadn’t yet encountered, but whose wildness attracted me.

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The Big Black Market for Spare Human Body Parts

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At Pacific Standard, Peter Andrey Smith reports on the black market big business of body brokers — those who prepare donated human remains for study by students, doctors, and scientists. A single human cadaver, parted out efficiently, can fetch $100,000 in a lightly regulated industry that’s ripe for fraudsters trying to make a buck on the donated dead.

In February of 2012, two duct-taped camping coolers—the kind you might take on a picnic—arrived at Delta Cargo, a freight-shipping warehouse on the northeast side of Detroit Metro airport. The airline’s ground crew tossed the coolers onto a pallet in a climate-controlled storage area. But the tape split, and a reddish liquid splattered out. Because the shipment was said to contain “five human heads with necks, two torsos, and one whole body,” it soon proved to be an expensive leak, requiring extensive biohazard remediation.

It seemed improbable that an entire body could fit inside two picnic coolers, so they pried open the lids. Inside were eight human heads, wrapped in trash bags and sitting in what appeared to be pools of blood. Eight faces, no names.

The United States is an excellent place to be in the body business. By one 2007 estimate, 20,000 human bodies are donated here annually. These donations come about directly. You can bequeath your body to anatomical gift programs operated by many universities, and you may become the “first patient” a surgeon operates on. Donations can also be arranged after death, through a network of independent firms, although in such cases your family may have only a vague notion of where your body will end up. Brokers do business with other brokers, who work with funeral homes and crematoriums that, in turn, get referrals from hospice centers—all of which means that, invariably, some donated remains end up dismembered, beheaded, and shipped around the world for profit.

You cannot legally sell a dead body—yours or anyone else’s. These brokers, instead, turn a profit off a corpse by charging for the service, not the actual goods. Their fees cover the “preparation” of cadaveric material as well as the “matching” and “placing” of remains. These re-allocation fees were once designed simply to cover the cost of transporting remains to and from medical schools.

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In the Wake of Weinstein and #MeToo, Why Does R. Kelly Still Have an Audience?

(Rex Features via AP Images)

At Rolling Stone, reporter Jason Newman recently revealed another round of sexual assault and abuse allegations against R. Kelly. The allegations are from one of Kelly’s former girlfriends, disc jockey Kitti Jones, who dated the singer from 2011 to 2013.

It was June 2011, and R. Kelly had just performed to a frenetic crowd at the Verizon Theatre outside Dallas, Texas. It had been nearly two decades since the singer’s raunchy lyrics and honeyed voice turned him into a R&B superstar and sex symbol. But despite multiple controversies over his alleged sexual relationships with underage girls, his still-dedicated fan base sent his latest album — the throwback soul LP Love Letter ­— to number six on the Billboard 200…

[Jones had] been into Kelly since she was a teen in the early 1990s, when she’d hide in her room with his music to escape her mother’s tumultuous romantic relationships. She’d buy every magazine he was in and, upon the release of his 1993 solo debut, 12 Play, took a limo to a third-row seat at her first Kelly show. She’d seen him in concert seven times since. “He was my Brad Pitt,” she says.

The story of Jones’s relationship with Kelly includes food deprivation, forced sex acts, and a dormitory-style, cult-like atmosphere with his other girlfriends. It echoes Buzzfeed’s July story, “R. Kelly is Holding Women Against their Will in a Cult, Parents Told Police,” reported by Jim DeRogatis, who has followed the cloud of allegations surrounding the singer since before his 2008 trial for child pornography.

Jones says she went to Rolling Stone to support the women mentioned in the Buzzfeed report, some of whom are younger than 21 and are, according to one woman’s parents “brainwashed” by the singer.

Reports of Kelly’s illicit, predatory behavior go back to his marriage to singer Aaliyah in 1994 when she was 15 years old and he was 28. (Vibe published an apparent marriage certificate in its December issue that year). Over the years I’ve personally heard from Chicagoans with memories of Kelly traipsing the halls of local high schools looking to befriend teenage girls. Much less clear than Kelly’s gleeful exploitation of women and girls — he calls himself the “Pied Piper” of R&B — is how and why he gets to keep an audience and a job.

Rolling Stone’s article came out just a week after accounts of producer Harvey Weinstein’s predatory behavior were first published in The New York Times and The New Yorker. The public responded with shock, outrage, and then action. Weinstein was fired from the company he co-founded, expelled from the Motion Picture Academy, and could face criminal charges. Some of his accusers, like Angelina Jolie and Gwyneth Paltrow, are powerful Hollywood players, but regular women also stepped forward on social media to tell their own stories of sexual violence, using the hashtag #metoo.

Accusers of other powerful, predatory men soon followed: actor Kevin Spacey, Amazon Studios executive Roy Price, NPR’s senior vice president for news Michael Oreskes, former New Republic editor Leon Wieseltier, and ex-New Republic publisher Hamilton Fish.

In a tough news cycle, the courage of survivors heartened me. I’ve been the victim of sexual violence more than once. I know many women who can say the same, but often, it’s only behind closed doors, in voices thin with internalized shame that we speak of these things if we ever do at all. Also heartening, of course, were the consequences forced on many of the predators — the public shaming of them, the loss of deals, relationships, credibility.

Weinstein’s victims, that we know of, were mostly white — with the exception of Lupita Nyong’o, who published a detailed account of her experience with the producer in the New York Times. Bim Adewunmi, a critic I admire, wrote that black actresses, who get fewer roles for less pay than their white counterparts, were mostly saved in this instance because of their lack of desirability in the eyes of the mainstream. Weinstein was reported to have turned down actress Sophie Okonedo for a role because he doubted that she was “fuckable” enough to draw audiences. Adewunmi’s thinking didn’t sit right with me; sexually predatory behavior isn’t fundamentally about desirability. Also, women of color — especially indigenous women — have a higher lifetime incidence of sexual violence than white women and are less likely to report it to authorities or use social services to get help. We haven’t been saved from anything just because multitudes of us aren’t on one predator’s list.

There was a lot of silence after Nyong’o spoke up, and with R. Kelly’s victims, there’s been a similar silence. Perhaps it’s news fatigue: Everything is exhausting and heartbreaking, and one can only be outraged so much. Still, it’s curiously telling who the outrage and action follows. There are black women writers and activists who’ve tried to wake us up to the horror of Kelly’s behavior, yet he continues to tour and record music. Right now, on this very day, about half a dozen girls and women may be held in a weird, multi-city sex cult in R. Kelly’s homes. Some of their parents have asked for help. Aren’t they worthy of our collective fury, too?

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What Makes a Disability Undesirable?

(Ton Koene / VWPics via AP Images)

Who gets to decide if a disability is bad? This is one of the fundamental questions raised by a recent STAT feature on the genetic testing of embryos, which also looks at how that decision is reached. Andrew Joseph follows two women who knowingly pursue a pregnancy with an embryo that has a mutation that would put their child at a higher risk for certain cancers. It was the only viable embryo the couple had, so if they wanted a baby they didn’t have much of a choice.

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The Intimacy of an Android: An Interview With Alex Mar

(Cait Opperman / Wired)

Alex Mar’s cover story for Wired‘s November issue, “Love in the Time of Robots” is an epic look at the life and work of Hiroshi Ishiguro, director of the Intelligent Robotics Laboratory, who has spent his life and career in pursuit of a more perfect android. He has made copies of his friends, family, and himself with his “Geminoid” project, and he delights in the moment when a human confronts its twin. What could have been a simple profile of Ishiguro goes much, much deeper — at nearly 12,000 words, it is one of the longest features that Wired has run in print — as Mar explores the origins of human nature and intimacy, and the desire to turn to a robot for comfort or companionship. “Most of us already allow technology to mediate what was once simple, direct human interaction,” Mar writes, “what really is the difference?” I spoke with Mar via email about her experience with Ishiguro and the freedom of writing at a length far beyond the typical magazine feature.

***

How many times did you meet with Hiroshi Ishiguro? How did your understanding of him and his work change with each meeting?

I’ve been in touch with Hiroshi for over two years and we spent about three weeks in each other’s constant company in Japan, between Osaka and Tokyo. He was immediately forthcoming with me, very open and direct. We had a great, natural rapport from our first Skype chat, and that was a big part of why I decided to pursue the story. Almost immediately he announced himself as less of a roboticist and more of an artist, which I could relate to more than an engineer’s perspective — he was turned on by big concepts and risk-taking.

Over time he did become more open about his family, a subject that’s pretty verboten for him, as he’s always been a firm believer in keeping his family life separate from his public, professional life. (Ironic, considering his first major experiment was an android copy of his then 5-year-old daughter.) He’s a charismatic figure, and he and his work have gotten plenty of press coverage internationally over the years. It took a moment for him to realize I was also interested in very minute details about his life — his childhood, his personal habits — things that he at first dismissed as too boring to discuss. It’s funny how often people assume that the kind of minutia that really makes a story, the intimate stuff, isn’t worth mentioning.

Ishiguro closely studies the small physical cues involved in human interaction in order to build a better android. (He notices, for example, that people never sit completely still.) But you seem to think his understanding of humanity is lacking. How did your understanding of his work change over time?

I don’t know if Hiroshi’s understanding of humanity is lacking any more than yours or mine. It’s more that his project is immense and requires a lot of hubris. He’s studying, measuring, and trying to replicate something that remains pretty intangible: the human presence, which the Japanese call sonzai-kan. The ineffable thing that signals to us that we’re sitting across from a living, breathing, thinking, feeling person. Plenty of people would call that a soul — something that, by definition, is impossible to replicate. So I think the bigger question here is: Do you think that human-ness is something that we can measure and weigh and build from scratch? Hiroshi’s answer to that, at least in public, is a resounding yes. But in private, I think that Hiroshi is conflicted. Personally, he seems to be struggling with his own deep desire for human connection — he spoke to me repeatedly of his feelings of loneliness — and I don’t know if he’ll ever be able to reconcile that with his work.

When did you suspect you would have to be a part of this story? How did you decide how much of yourself to put in?

I consider myself a “literary” non-fiction writer, but not a particularly confessional one. I believe in using the first person sparingly in journalism; in my longform stories I’ve tended to use it more as a light-handed framing device. But with my first book, Witches of America, about the present-day witchcraft movement around the country, I was surprised and a little bit horrified when I realized I needed to go all-in and insert myself as a character. I needed to be honest with myself and the reader about my curiosity about witchcraft, and to be frank about how subjective my experience of these Pagan rituals was — there’s no “objective” way to take part in a religious ceremony. My approach to the book became very personal and immersive, and any other approach would have felt dishonest.

When I returned from my first reporting trip to Japan, I had that feeling again: The subject of the story required a writer who was also a stand-in for the audience. I had to be able to describe in a very immediate way the experience of being around those androids, of being immersed in Hiroshi’s world and his way of thinking about humanity. When events in my personal life began to get all tangled up with the ideas I was absorbing in Hiroshi’s labs, I felt the only honest way to write this story was to weave that in.

Do you think that inventors who work at the edge of what is technically possible — with artificial intelligence, virtual reality, and so on — lose sight of what humans actually want, what we actually need? It seems like much of what Silicon Valley provides serves the interests of a narrow subset of people in the name of helping humanity.

It seems to me that the goal of a lot of research and development is to anticipate a need, or perhaps to create a desire where previously there was none. Android development is less about a concrete need — a robot doesn’t have to have a human face to perform surgery, or rescue someone from a war zone — but it does seem like an extension of the parts of our lives technology has already colonized. So many of our relationships are already virtual or text-based: entire friendships with people we almost never see in person, interactions with avatars people have created to stand in for themselves online. I’m willing to bet that internet porn, for those who are more or less addicted to it, is rewiring their sexual instincts and, to a degree, eliminating the need for actual human contact. And what about the constant need for affirmation that Instagram or Facebook satisfies? Are we really interacting with humans when we’re interacting on social media, or would that shot of cortisol to the brain be just as satisfying coming from a bot? If you go down this rabbit hole, it becomes possible to imagine a market for android companions, whether platonic or sexual, that goes beyond a “narrow subset” of people.

But putting that longer-term apocalyptic talk aside, here’s something else to consider: AI, android science, VR, etc. — these are clearly male-dominated fields, whether we’re talking about Japan or the U.S. Therefore the needs and desires research and development is addressing are, for the most part, the needs and desires of men — the fantasies of men projected onto the not-so-distant future. When I learned that Hiroshi had produced some two dozen attractive female androids, I thought, of course they were female, young-looking, and pretty. He may be a radical, independent thinker, but he’s ultimately following the dictates of an industry built by men.

This is one of the longest features Wired has ever run in print, over 12,000 words. Was having that kind of length helpful for this subject, or was it unwieldy at times to tell a story of that length?

My very first draft of the story was close to this length, and it felt natural. I’m very grateful that Wired was willing to give it that space, about twice their typical feature length. I think there was a consensus that this story needed that kind of room because of how it continues to evolve all the way to the last page. Hiroshi’s work has a breadth of scope that requires that much space if you’re going to push beyond “man who creates good-looking androids” terrain to get to something deeper. My editor Mark Robinson was a real believer in the piece and wanted to avoid any cuts that might subtract from what he thought made it different and strange and intimate.

There’s also the fact that, for whatever reason, 12,000 words is a sweet spot for me with magazine features. I like to hurl myself into the subject and write my way out of it, and it seems to land at that length nearly every time. But I believe that every story has a length that it naturally wants to land at, once you’re plugged into the writing process. That’s why it’s so valuable to have magazines that are willing to take this kind of risk and go long. This kind of freedom is the greatest gift an editor can give you.

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“No Fatties”: When Health Care Hurts

Illustration by Hannah Perry

Carey Purcell  |  Longreads  |  October 2017  | 4280 words (16 minutes)

Kasey Smith began gaining weight as a teenager. The numbers on the scale started increasing overnight, and no matter how few calories she consumed, they continued to go up. “It will even out,” she thought, crediting the change to puberty and hormones. But it didn’t, and her hair and skin began changing as well. “Something was definitely wrong.”

Each medical appointment, and there were many, concluded with doctors telling her to go on a diet. Smith (not her real name) remembers telling the endocrinologist about her frustrations with burning off the 900 calories she consumed each day and still gaining weight. “He looked at me and said, ‘Maybe you can cut back your McDonald’s to twice a week.’ I was stunned silent, and I went into the bathroom and broke down. ‘He doesn’t believe me. He thinks I’m just fucking with him.’”

As Smith’s weight went up, her food intake went down. Her mother signed her up for Nutrisystem, and her diet hung on the fridge for everyone in her family to see. Shame and humiliation narrowed her life down to three questions: what to eat, what not to eat, and how to burn more calories. She began to form dangerous habits, sometimes eating little more than lettuce.

Smith ultimately received a diagnosis of polycystic ovary syndrome, a hormonal disorder that can lead to excess male hormones, irregular menstrual cycles, and weight gain. She was prescribed Metformin and quickly began to lose weight, but the damage had been done. The 18-year-old developed anorexia, leaving for college at 130 pounds and coming back four months later and 30 pounds lighter, her hair falling out in clumps.

No one thought anything was wrong.

“I would go to the doctor, and there were no red flags. It was ‘You look fantastic!’ Not ‘This is alarming.’” Smith continued starving herself for another year until she ended up in the hospital, undergoing a colectomy to remove a foot and a half of her intestines, which had twisted as a result of her severe calorie restriction.

One year after the surgery, her worst nightmare returned: She was gaining weight. Celiac disease was the cause this time, but it wasn’t diagnosed until after Smith was in the habit of purging the little food she ate every day. She would regularly run in the park and pass out afterward. “I would starve all day, then I’d eat something at night, then I would purge it. In my head, I’m thinking, ‘I’m literally not consuming anything. The weight has to fall off.’”

She realized she needed professional help, and Smith found a therapist who specialized in eating disorders and began treatment at The Renfrew Center, a residential facility in Pennsylvania. She continues to struggle with discussing her weight at medical appointments. After she told her endocrinologist about her treatment at Renfrew, his reply was “I see you need to lose some weight.”

* * *

According to the National Association to Advance Fat Acceptance, one out of three doctors responds to obesity negatively and associates it with poor hygiene, hostility, dishonesty, and noncompliance, viewing fat patients as “lazy, lacking in self-control, non-compliant, unintelligent, weak-willed and dishonest.”

“Doctors may think they are doing their jobs by focusing on patients’ weights,” said Dr. Rebecca Puhl, deputy director of the Rudd Center for Food Policy and Obesity. But the effects of weight discrimination, both physical and mental, can be harmful to patients. “I do see this in health providers just as much as the general population, which is that maybe stigma isn’t such a bad thing. Maybe it will motivate people to lose weight. Maybe it will provide incentives for weight loss. But that is not what we see in research. We see the opposite — that in fact, stigmatizing people about their weight actually reinforces behaviors in health that increase body weight and obesity.”

The doctor looked at me and said, ‘Maybe you can cut back your McDonald’s to twice a week.’

As weight discrimination has increased in recent years — roughly 40 percent of adults report having experienced some form of weight stigma — so have obesity rates. A positive correlation between experiencing weight bias and developing eating disorders has been documented, and two studies have reported that overweight children are more likely to binge after being teased about their weight. Nor do these habits change as we age. In a 2006 study of more than 2,000 overweight and obese women who were part of a weight loss support group, 79 percent said they turned to food after experiencing weight stigma. Another common response: refusing to diet.

Johanna Tan encountered that stigma when she gained 80 pounds in three months after beginning the hormonal birth control Depo-Provera. Her doctor suggested weight loss, and she chose a weight loss clinic. In the weeks after undergoing her doctor-mediated diet of 500 to 800 calories a day, Tan began experiencing episodes of chest pain so severe she made more than one trip to the emergency room. Her general practitioner blamed her symptoms on her large breasts. “Never mind that my boobs have always been this big, and this was a new symptom,” Tan said, laughing wryly as she explained she had been performing special exercises and getting massage treatments to help ease the symptoms. But it wasn’t her breasts that were causing the pain, it was her gallbladder. Gallstones had blocked her common bile duct, and if left untreated it could cause acute liver failure. The cause of the gallstones? Rapid weight loss. Neither Tan’s weight gain nor her loss had been correctly assessed by her doctors. (Depo-Provera lists weight gain as a common side effect. When Tan voiced concerns to one doctor, she was told, “Everyone gets more hungry. You just need to not eat more.”)

The assumption that any health issues a fat person experiences can be chalked up to weight has not gone unnoticed by the fat community. Marilyn Wann was motivated to pursue fat activism after what she describes as her Really Bad Day, when a man she was dating told her he was embarrassed to introduce her to his friends because of her weight, and she was denied health insurance because Blue Shield of California deemed her morbidly obese.

“This double whammy of social and institutional exclusion based on my weight woke me up,” she said. “Until then, I had hoped to avoid the impact of anti-fat attitudes by avoiding the whole topic. But hiding and silence and avoidance didn’t keep the yuck from finding me. So I recognized that I had to come out as a fat person. The next day, I went to a copy store and made up business cards for my new print zine, which I decided to call FAT!SO? — ‘For People Who Don’t Apologize for Their Size!’ Immediately, my life became less stressful. Of course, I still encounter anti-fat attitudes and weight-based exclusions, but I have drawn a line between me and the hatefulness. It makes a huge difference.”

Wann still experiences bias, especially at the doctor. “I know before I enter the door that the whole system prioritizes its prejudice over my well-being,” she said. “The prejudice is what’s necessary to the institution as it stands. The medical establishment, the insurance agencies, public health agencies that are government-based have always advanced their agenda on the back of fat people. … The institutions of our supposed health systems — in the government agencies, in the insurance companies, in all of the medical practices — are saturated or have deeply ingrained anti-fat bigotry.”

Establishing the balance of information and compassion while discussing a patient’s weight is constantly on Rebecca Zuckerman’s mind. “It puts medical professionals in a weird catch-22,” said Zuckerman, a fourth-year medical student at the Pritzker School of Medicine at the University of Chicago, who understands the motivation of fat activists but whose education includes the negative medical impacts of obesity. “It’s something I’ve struggled with personally. You can only explain it and tell people their options. You can ask if it’s OK to talk about weight loss or give more information. If they say, ‘No, I don’t want to hear it,’ you have to respect that.”

Still, the intense schedule of medical professionals, who are often allotted only 15 to 20 minutes per patient, often results in less-than-ideal communication. It’s easier to reach for the quickest conclusion: telling the patient to lose weight. Says Zuckerman, “A lot of doctors and nurses experience burnout, and they start losing empathy and don’t view the patients as people anymore. Your hands are tied to stay within those 20 minutes. Everyone’s trying to make more money, and the doctors are a cog in the wheel.”

That’s along with pervasive stereotyping about fat people in the medical community. In a study of 318 family physicians, two-thirds reported that their obese patients lacked self-control, and 39 percent stated that their obese patients were lazy. Even health care professionals specializing in nutrition thought poorly of their obese patients: “Attitudes toward obesity and the obese among professionals,” a study in the Journal of the American Dietetic Association, reports that 87 percent of health care professionals specializing in nutrition believe that obese persons are indulgent, 74 percent believe that they have family problems, and 32 percent believe that they lack willpower. In 2013, the American Medical Association labeled obesity a disease.

The misdiagnoses that occur lead directly to poor health outcomes. Johanna Tan ultimately spent three years in pain, leading to four weeks of hospitalization, a series of invasive surgical procedures, and lengthy rehab — procedures that wouldn’t have been necessary had the gallstones been caught earlier. While she was enduring severe pain following her first surgery and struggling to complete her postsurgical rehab, the hospital staff accused her of being lazy. “I spent two weeks in hospital post-surgery,” she said, “copping abuse for being lazy and not participating in my own rehab, before they realized they fucked up.” Tan said the nurses were condescending, saying, “I know it hurts. It’s major surgery. You still have to get up.” The pain didn’t ease until her doctors realized they had missed some gallstones and had to perform a second surgery. Tan wasn’t able to walk more than 10 feet at a time for the first month following her surgeries. It took six months for her to be able to walk further than a block.

* * *

Fat patients also often find themselves facing off with doctors who refuse to write prescriptions or referrals until patients lose an arbitrary amount of weight, a common scenario for those seeking joint replacement surgery. Despite being in “crazy amounts of pain,” Melinda Belles-Preston was required to lose 30 pounds before receiving an operation on her hips. Losing between one and two pounds a week, a healthy pace according to the Centers for Disease Control, would delay her surgery by several months. Heavier patients see longer lags. A required loss of 50 to 100 pounds can postpone a procedure for months or even years unless the patient undergoes weight loss surgery. Without surgery, the time spent in pain is prolonged, opening the door to painkiller dependence. It took Belles-Preston roughly six months to lose the weight, and she was in pain the entire time.

“Going in nutrient-deprived and starved is probably not a good way to send someone into heart surgery or major any surgery,” Wann said; her tone made it clear she was stating what she thought should be obvious. “Someone who’s been losing weight may have worse outcomes than someone who’s stayed the same weight. … It’s amazing how someone can just look at you and decide how a random number of pounds can shift you from someone who doesn’t deserve care to someone who does.”

Pain management was barely discussed when Virgie Tovar, activist and author of Hot & Heavy: Fierce Fat Girls on Life, Love & Fashion, went to the doctor after being injured on an amusement park ride. Suffering what she described as “debilitating back spasms” that made movement “electrifyingly painful,” she was told she had to lose weight before anything could be done for her. “It was like this dogged commitment to not helping me until I was at a different weight,” she recalled. “Let’s say I lose weight at what is considered a normal pace that doesn’t endanger a person’s life. For me to get to the weight you’re talking about is like 10 years. So I just get to be in pain until I’m at that weight. And if I’m still in pain after a decade of weight loss, then you’ll think about taking care of this?”

Ideally, preventive care helps patients avoid catastrophic health problems, but it’s not always accessible to fat patients, whether because of issues with doctors, issues with technology, or both. Fat patients have been refused medical screenings, such as Pap smears, mammograms, and colonoscopies, that are considered routine and vital for thin patients. The American Cancer Society advises women to get mammograms yearly beginning at age 45 and colonoscopies every 10 years beginning at age 50, but fat people often struggle to find facilities that will perform the screenings and are told they cannot fit in the machines.

A required loss of 50 to 100 pounds can postpone a procedure for months or even years… It took Belles-Preston roughly six months to lose the weight, and she was in pain the entire time.

The importance of an MRI comes from its ability to provide higher-quality images. But the machines that provide those images are small, and other options, like CAT scans or ultrasound, don’t provide a comparable alternative. “All those scans need to penetrate the body to create an image. If a body is larger and has more fat tissue to penetrate, the image quality is poorer and blurrier, and it’s harder to make out structures,” Zuckerman explained. “It’s harder for skilled radiologists to diagnose things in patients who are larger for that reason. … The fact is, MRI machines are tiny. Some people literally cannot fit in them. So we do something else like an ultrasound or CT that is not quite as good. It’s better than nothing, but it doesn’t give us the image quality that an MRI does. You run the risk of missing something because the picture that you’re getting is not clear.”

The need for hospital equipment that can accommodate fat people has grown, and imaging devices are now available. This equipment is not available everywhere, however, and sometimes patients are referred to their local zoos. When Wann called the San Francisco Zoo’s medical department to ask about accessing its technology, the person on the phone sighed and said, “I wish people would stop saying that,” referring to requests to use the department’s CT and MRI scanners. While vet schools and zoos have larger-capacity devices, they can’t allow human subjects, and scanning humans in machines intended for animal subjects is banned by formal policies in most facilities. “That’s really beyond their certification,” explained Wann. They’re not licensed as an institution to practice medicine on people. Their entire institutional certification is being put on the line because our human medical system refuses to accommodate people above a certain size. It draws an arbitrary line and says, ‘Go beyond this line, and they’re monsters.’”

Without being properly screened, patients can’t be diagnosed. A 2008 review of previously published studies, 32 in total, reported that white, female, obese patients were less likely to be screened for breast and cervical cancer. A study from 2006 reported that only 68 percent of women with a BMI of greater than 55 were given Pap tests, while 86 percent of other women were tested.

In some cases, this is a result of fat patients opting out of health care entirely, even if they otherwise have the ability to access health care facilities and are insured: According to the International Journal of Obesity, 19 percent of participants reported that if they felt stigmatized about their weight by their doctor, they would avoid future medical appointments, and 21 percent said they would seek a new doctor.

“Fat people don’t go to the doctor often. They tend to avoid it,” writer and activist Kitty Stryker said. “A lot of fat people are ashamed of being naked. They don’t want to be touched. When I say I have a lower-back problem, I know they’re going to say, ‘Lose some weight, and that will go away.’ So what’s the point? Why bother continuing to try to get to the root of my health problems when I know the only thing they will ever tell me is ‘Lose weight’?”


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Patients often face added risk beyond concerns of being dismissed or the necessary treatment being denied: the possibility of weight loss treatments and procedures being strenuously suggested at inopportune or irrelevant moments. While the American Academy of Family Physicians recommends screening for obesity along with monthly sessions of counseling and behavioral interventions, the timing of these suggestions is crucial to the impact of motivational interviewing — and execution is often poor. Tan was mid-Pap smear when her doctor asked if she wanted a Weight Watchers pamphlet.

“The speculum’s already in and open. And she says, ‘I can tell you’re getting upset. Do you want me to continue?’” Tan recalled in disbelief. “I said yes because I didn’t want to have to make another appointment for my Pap smear. I was so mad, I was crying at this point. I couldn’t move. I couldn’t yell. She said, ‘I can tell I’ve made you upset, but weight is a serious issue.’”

Although familiar with the prejudice that came with her weight, Belles-Preston was still shocked when her general practitioner recommended weight loss surgery — while she was pregnant. “I walked out of the room. It was so incredibly offensive to me. I’m coming to you for medical advice about my pregnancy, and you’re talking to me about weight loss surgery, which is the furthest thing from my mind.”

“I have tons of resources and attitudes for confronting this kind of stuff, and it can still kill me,” Wann said as I marveled at her calm approach to discussing prejudice so severe it can result in death. “I understand not going [to the doctor]. I think it’s self-protective to some extent.… Every time I go to any kind of medical appointment I anticipate facing weight bias. I anticipate being denied the sort of services thin people would receive with no problem or being targeted for weight-based treatments that I don’t want and could harm me. I’m not interested in stomach amputation or stomach squeezing. I don’t think those are therapeutic practices in any sense. Every time I go see a doctor I’m aware they may casually say the only thing they want me to do is have my stomach cut off.”

* * *

The effects of that bias were traumatizing and long-lasting for Tan. Triggered by her uncomfortable experiences in hospital environments, Tan’s first job as an audiologist after graduate school provoked frequent panic attacks because of its location at a hospital. “I used to have to go to work early so that I could tamp down the panic associated with being in a hospital at all,” she said. “This fear of hospitals hasn’t quite gone away. Most recently, a few months ago, we had to spend a few days in ICU as my partner’s dad passed, and just being back in ICU rattled me so badly it was a month before I could stop popping several Valium a day.”

It was the adversarial relationship she had developed with doctors and nurses that contributed to Tan’s panic. And she’s not alone. For many, thin means healthy and fat means unhealthy. So small and slender equates with good health and is encouraged by medical providers, often resulting in strained relationships with their patients.

The idea that the lower the weight, the healthier the person, escalated into life-threatening conditions for Smith, who was frequently complimented on how healthy she looked while she was starving herself. “When you’re restricting [calories] you can brag about it,” she said, recalling her preparation for the colectomy. “[Doctors] asked, ‘Are you eating well and exercising?’ I said, ‘I’m very healthy. I exercise all the time. I only eat vegetables.’ It’s a funny dichotomy. Just because the scale is low does not mean that you’re healthy. A lot of doctors forget to be careful of that.”

But as the number on the scale climbs, the less flattering characteristics — greed, lack of control, messiness, lack of self-care, laziness, automatic unhealthiness — are associated with fat people, only to be furthered by the media’s portrayal of fat characters, who are typically the butt of jokes or seen as slovenly and undesirable. Women are often the punch lines, much more than men. BMI standards also are more harsh for women than for men, which is apparent in the statistics regarding weight loss surgery: Obesity rates in America are split fifty-fifty between genders, but 80 percent of bariatric surgeries are performed on women. In a 2014 study from Kansas State University, 72.8 percent to 94 percent of overweight and obese men were satisfied with their health as compared with 56.7 percent to 85 percent of overweight and obese women. There’s a reason all the stories and sources here are about and told by women.

“The truth is that there are reasons why fit people live longer, better lives,” Tovar said. “It’s because the entire culture is constructed to benefit them.” Weight discrimination is associated with an increase in mortality risk of nearly 60 percent for both women and men.

Fat activists are working to provide recourse at the community level; patients share the names of fat-friendly doctors or establishments, and Wann uses her social networks to help people get referrals for doctors and other medical providers. She also assists people with planning responses to doctors and providers who inflict weight bias. Fat activist Stef Maruch maintains a list of doctors who do not inflict bias or are fat positive, and Wann encourages people to update it whenever they can. NAAFA also publishes brochures and tool kits to assist fat people in navigating bias and fighting anti-fat legislation. A monthly newsletter updates recipients with the latest research and provides referrals to practical tools like products made for people of size. After Hurricane Harvey devastated Texas, NAAFA released a special-edition newsletter and sent plus-size clothing and supplies.

Obesity rates in America are split fifty-fifty between genders, but 80 percent of bariatric surgeries are performed on women.

The organization has also updated the brochure it gives health care providers treating fat patients. It was last updated in 2011, and per the recommendation of one of NAAFA’s advisers, its language is being revised to be much more aggressive when discussing weight bias with medical professionals. “Up until this point we’ve been trying to inform and be a little bit gentle,” explained Peggy Howell, NAAFA’s vice chairman and public relations director, citing the research scientists, Ph.D.s, and professors in medicine, law, nutrition, social work and more who serve on NAAFA’s advisory board. “The advisers came back and said, ‘I think we need to take a different approach. I think we need to be more assertive about this. There are lots of studies that support that this bias does more harm than good to the patients.’” The nonprofit’s 2011 brochure states, “NAAFA is working to help ensure that health care providers provide the best possible care by keeping in mind the special needs of their fat patients.” The new brochure reads, “We currently live in an environment that stigmatizes anyone who does not meet the aesthetic or medically defined categories of an ‘attractive’ or ‘healthy’ weight… [it] creates and sustains fat phobia and oppression, which includes weight bias, prejudice, stigma, discrimination, bullying, violence, and cultural imperialism. … Sometimes the internalized biases of health care providers directly contribute to further stigmatization of fat people.”

There is some movement on the medical end as well, driven by health care providers seeking training and resources. The Rudd Center has developed educational videos, which have been tested and found to reduce weight bias. Viewing the two 17-minute films — “Weight Prejudice: Myths and Facts” and “Weight Bias in Health Care” — resulted in improvement in attitudes toward obese people. The Rudd Center has also created a media repository of 400-plus photos and more than 80 B-roll videos that portray children and adults with obesity in non-stigmatizing ways, intended as a resource of respectful, rather than stereotypical, images for the media as well as scientists and health professionals to use when making educational presentations.

“We’ve created online courses and all different kinds of resources to use to try to increase awareness about this issue and educate providers that this is more than a social justice issue,” Puhl said. “This is a full public health issue. The stigma is making their patients’ health worse.”

For many fat people, the response is too little, too late. “I would rather doctors have signs on their door saying, ‘I don’t treat fat people,’” Wann said. “It would save everyone time and money if they had a sign on their door that said, ‘No fatties.’ At least they would be honest and own their bias.”

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Carey Purcell is a New-York based writer who covers culture, politics and current events from a feminist perspective. She has been published in The New York Times, Vanity Fair, Politico and other publications. She has been a featured guest on AM Joy and Good Morning America, and her writing can be read at CareyPurcell.com.

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Editor: Michelle Weber
Illustrator: Hannah Perry
Fact checker: Matt Giles
Copy-editor: Sylvia Tan

The Female Fracker: A Rare Species in North Dakota

A pumpjack lifts crude oil and produced water from a fracture at a location over the Bakken Formation near New Town, N.D., on June 7, 2016. The USGS estimates that the oil rich region contains a mean undiscovered volume of 3.65 billion barrels of oil. (Photo by Alex Milan Tracy)

At Proximity, Blaire Briody brings us an essay adapted from her book, The New Wild West: Black Gold, Fracking, and Life in a North Dakota Boomtown. Briody profiles female fracker Cindy Marchello, who left Utah to work the oil fields of North Dakota after her 28-year marriage collapsed and the bank foreclosed on her house. At age 56, Marchello was the only woman on her crew, working rigs where six-figure salaries and hefty bonuses attract those without college degrees and few job prospects. Marchello worked hours upon hours at a stretch in an environment rampant with misogyny, living in a camp with 200 men where every six weeks, one of their coworkers died a violent and premature death in service of big American companies thirsty for oil.

Most of Marchello’s 12-person crew regularly clocked 120 hours a week—with some logging an occasional 140- or 160-hour week. That meant they worked, ate, and slept while on the well site, though sleep was never a priority. Most workers took catnaps in an 18-wheeler’s sleeper cabin. “When you’re out in the field, there’s not much sleep,” said Marchello. “You get used to it.”

The long hours, sleep deprivation, lack of training, extreme weather, and dangerous work were a particularly lethal mix. In 2011, North Dakota became the most dangerous state to work in, with the fatality rate nearly doubling since 2007. By 2012, the state job fatality rate was 17.7 deaths per 100,000 workers, more than five times the national average and one of the highest rates ever reported for a U.S. state.

Many workers I met said they saw a limit to the number of years they could stay in the oil field. They witnessed what happened to those who stayed too long—divorce, estrangement from their children, health problems, debilitating injuries, or early death. People often said oil field years were like dog years—for every year you worked in oil, you aged about seven years. Marchello estimated that with her oil field years, she was 92. “Mine quadrupled because I was so old when I started,” she said. But pulling herself away from the high paycheck and transitioning to a slower pace of life was easier said than done.

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