How Culture Shapes Madness, my latest at Pacific Standard

The Touch of Madness,” published online today in Pacific Standard magazine, is probably the most important article I’ve ever written.

In the fall of 2007, an incandescently brilliant young scholar named Nev Jones — a force and intellect such as few of us ever encounter — arrived at DePaul University to begin her PhD program in philosophy. Two years later she was out of the program, deeply psychotic, thoroughly terrified, and almost utterly abandoned. Four years later she emerged, a different PhD in hand, with a story to tell:

Culture, from the reigning medical views of madness to the subtle and sometimes violent responses of those around the afflicted, profoundly shapes the experience and expression of madness. And the way we in the West react to madness makes it far, far worse.

By this view, when people in mental distress are shunned and relegated to a class of others needing care away from the rest of us, they are pushed outside of culture precisely when they need it most. They may seem utterly detached from reality. But they will keenly comprehend their exile.

This idea is not original to Jones. It’s a demonstrable fact supported by decades of research and solid, multidisciplinary work. But Jones articulates this with particular power because she knows intimately both the related literature and the experience.

This is her story: A story of what it’s like to have reality refashion itself, as one wrinkle in fabric’s reality after another gather the world into folds; to watch as those around you run or drift away; to find yourself alone in a place where the labyrinths of psychosis feels safer than the isolation one faces in the ‘real’ world. It’s a story of brilliance, madness, betrayal, friendship, courage, and renewal. It’s also the story of how the rest of us can help by changing the way we view madness, and how we can better understand those around us who’ve experienced or will experience psychosis.

I have faith that, despite the inevitable imperfections of my telling here, you will never forget Jones’s’ story.

A brief excerpt:

Words started to look strange. She began experiencing “inarticulable atmospheric changes,” as she put it—not hallucinations, really, but alterations of temporality, spatiality, depth perception, kinesthetics. Shimmerings in reality’s fabric. Sidewalks would feel soft and porous. Audio and visual input would fall out of sync, creating a lag between the movement of a speaker’s lips and the words’ arrival at Jones’ ears. Something was off.

Another time she found herself staring at the stone wall of a building on campus and realizing that the wall’s thick stone possessed two contradictory states. She recognized that the wall was immovable and that, if she punched it, she’d break her hand. Yet she also perceived that the stone was merely a constellation of atomic particles so tenuously bound that, if she blew on it, it would come apart. She experienced this viscerally. She felt the emptiness within the stone.

The Touch of Madness, at Pacific Standard.

A Sane Person’s Privacy Nightmare

A LinkNYC wifi tower. Photo by Billie Grace Ward, via flickr, some rights reserved.

At Slate today I examine the potential privacy nightmare posed by the emerging healthcare sector that wants to use data gathered from smartphone use to spot mental-health crises early and intervene before they get bad. The idea has huge potential for good — and for privacy disasters that could make the recent Equifax leaks look minor.

“You fucking dungeon!” the man, well behind us now, yelled one last time.

It was only later, when I tried to make sense of what he was yelling, that I realized that his cries voiced one of the most difficult and vital questions about how to use connected technology to aid the distressed. Who will have access to our most intimate conversations? In this man’s dungeon lurked a riddle.

A Sane Person’s Privacy Nightmare, Slate, Sept 25, 2007

 

Should fitness share the stage with beauty? My review of Prum’s “Evolution of Beauty”

Charles Darwin, 1883, by John Collier. National Portrait Gallery, London.

The Times Sunday Book Review, six days ahead of the Sunday paper, published today my review of Richard Prum’s “The Evolution of Beauty” (and a few other titles). I found Prum’s book “a delicious read, both seductive and mutinous” — mutinous in particular against those he feels have entrapped evolutionary biology in an “impoverished, even corrupted” gene-centric view “of evolution in general, and in particular of how evolution has shaped sexual relations and human culture.”

This adaptationist view, which sees all selection as natural selection based on fitness, should make room for a view that sees sexual selection, which is exerted through mating choices based on aesthetics and pleasure, as an evolutionay force independent and sometimes contrary to natural selection.

He nimbly mines both the animal and human literature to show how, for one human trait after another, adaptationist explanations miss the mark while aesthetic explanations hit home. His catalog of Things Natural Selection Can’t Explain but Sexual Selection Easily Can includes homosexuality, a tendency toward monogamy, both sex’s taste and capacity for sex outside of female fertility periods, the deweaponization of the human male through the evolutionary shrinkage of almost every body part except the brain and the evolution of human paternal care, which is highly unusual among our fellow apes and close primate cousins. To name just a few.

Consider, for instance, this handful of well-known distinguishing human traits: our constant interest in sex, permanent breasts, big penises, and, last but hardly least, women’s orgasms. Except for constant sexual interest (and possibly female orgasm) in bonobos, none of these traits evolved in our fellow ape species. Prum argues that they evolved in humans because they help women evaluate men’s prosocial-pleasure potential. When sex offers orgasm at relatively low pregnancy risk, it provides a way not just to reproduce but to assess potential mates’ attention to female desires, tastes and choices. Essentially, Prum says, humans evolved to negotiate and have sex as a sort of display ritual. The boudoir is our bower.

Help yourself to the rest over at the Times.

Many thanks to the wonderful New York Times Sunday Book Review editors Parul Sehgal and Gal Beckerman, who supported this review so nicely; and to colleagues Nathaniel Comfort, Eric Johnson, and Daniel Lende, who helped me improve it greatly with sharp reads on early drafts. Any errors, god forbid, are mine.

 

Does autism happen the way we think it does?

Illustration Kouzuo Sakai, courtesy Spectrum Magazine

My latest story, about how autism starts, starts like this:

One of the oldest ideas in autism — as old as the naming of the condition itself — is that it comes in two forms: one present from birth, and one that abruptly emerges in toddlerhood. The latter type, or so the idea goes, announces itself through a rapid loss of skills.

In this classic picture of ‘regression,’ a talkative, curious 2-year-old suddenly withdraws. He grows indifferent to the sound of his name. He begins to speak less than before or stops entirely. He turns from playing with people to playing with things, from exploring many objects and activities to obsessing over a few. He loses many of the skills he had mastered and starts to rock, spin, walk on his toes or flap his hands. It’s often at this point that his terrified parents seek answers from experts.

The distinction between regressive autism and innate autism has shaped both scientific and cultural views about autism (including the spurious vaccine-as-cause controversy). But it increasingly appears this divide may be illusory.

Get the full skinny at Rethinking regression in autism, at Spectrum.

On John McCain’s False Heroism

Major Thomas David Dobbs, my uncle, back in the day.

My latest at Slate went up a couple days ago, after John McCain performed a weeklong drama in which he first revived the Kill Obamacare movement and then, telling reporters, “Watch the show,”  helped bring it to a halt. It was a hero script, but I found it cruel and self-indulgent. I have another script to offer for his next show.

What My Uncle, a Fighter Pilot, Might Have Thought of McCain’s “No” Moment

Smartphone psychiatry? How NIMH director Tom Insel turned from brain scanners to social tech

Thomas Insel, photo courtesy of The Atlantic.

Around this time, Insel told me recently, he’d just finished a talk describing the wonderful things the NIMH was discovering about the brain when a man in the audience said, “You don’t get it.”

“Excuse me?,” Insel said. “I don’t get what?”

“Our house is on fire,” the man said, “and you’re telling us about the chemistry of the paint. We need someone to focus on the fire.”

“I heard that,” Insel told me. “I went home and thought, There’s truth to that. It’s not just that we don’t know enough. The gap between what we know and what we do is unacceptable.”

This is the story of how NIMH director Tom Insel, the most powerful psychiatrist in the world, decided to try closing that gap with smartphones — not as treatment, but as a way to assess mood, and then marshal the social and clinical support to intervene when need be.

The Smartphone Psychiatrist, at The Atlantic, July/August 2017

Did the gene-drug revolution just arrive?

Did the genomic revolution arrive last week, or was that just the snowstorm?

The answer depends on whom you listened to and what they thought of a study published on March 17 that showed a gene-based drug called Repatha reduced cardiovascular risk by 15%. Some called the study a triumph because it showed a drug developed through gene discovery could directly control a faulty gene’s output to therapeutic effect.

Others offered that the 15% reduction of cardiovascular risk was rather modest, being lower than the 20–25% predicted and not impressive next to existing drugs; opined that the drug is “an ingenious solution for a problem that’s mostly already solved; and noted that the the death rate itself didn’t change.”

It’s messy. My own quick take is that it’s a bit early to say Repatha settles the growing debate over whether we’re placing outsized bets on gene-based drug development. I’ve too many other commitments at present to get into this in any detail. Fortunately, Derek Lowe did get into it, three times. Amid the gush about the study’s results, his multiple examinations of this question remind us of how fraught and difficult these questions are.

Here are three snips from three his posts. I highly recommend reading all three in toto.

His quick first take, on March 17

This morning we have three-year data from Amgen and their drug Repatha (evolocumab), an announcement that has been eagerly awaited. And it’s honestly not all that impressive. There’s a 15% relative reduction in cardiovascular risk (heart attack, stroke, etc.) relative to placebo, but investors were looking for something more over 20%. Insurance companies were probably looking for that, too, and given the price they’d have been happier to see something more like 25%. Amgen is defending the data (as quotes in this Adam Feuerstein piece show), but I don’t think that’s going to do the job. The numbers shouldn’t have to be interpreted and spun; in a three-year study with over 13,000 patients in each arm, the numbers should be able to speak for themselves, and they don’t.

His March 20 post provides a thorough explanation — and then some perspective-taking:

The Amgen study, while successful, was not all that compelling. Yes, the relative risk for the composite cardiovascular endpoints used in the study went down, but not by as much as observers were hoping for (15% reduction versus 20 or 25%). And when you get down to overall mortality, there was no change at all, which has to be a disappointment. Amgen has been arguing that this was a relatively short study, and that the first measurements were also taken at a relatively early point in the treatment, and that the overall trend is for better numbers as the treatment goes on (which may well continue). But while these points may be valid, it’s a little rich for Amgen to be making them, because they designed this trial themselves, presumably to generate the most compelling results in the shortest amount of time. The fact that they’re having to make such arguments at all is a sign that the trial definitely did not come out the way that they’d hoped – you can be sure that the plan was not to have to say “Well, gosh, it’s really not bad if you look closely”.

and

What does this tell us, then, about genomics-based drug discovery? PCSK9 is about as compelling a story as we’re likely to see in this space, and if it has indeed come up a bit short, that’s food for thought. To be fair to Amgen, they may well be right about the continued improvements over longer-term therapy, in which case this story may have a better ending. But the slam-dunk game-winning ending is already gone. That may be the main lesson we can draw for now – here’s a terrific case, and it still didn’t blow everyone away when it finally got to multiyear human therapy. Everyone who’s following genetic-based clues to human therapy (a big crowd indeed) should keep this in mind.

In that second, longest post, he gives a hat-tip to the observer who called the study a triumph, saying that “PCSK9 is indeed the real thing, and just what people were expecting” back around 2000 when we sequenced the genome and thought it’d cure everything. It’s a conciliatory post. And yet…

So there’s a case to be made that this target really is the dawn of the era that we all thought was dawning years ago. I can appreciate the celebratory tone of Plenge’s post, but at the same time, if you’d told people back in 1999 how things had worked out, they would likely have been (at some level) horrified that (a) it took until the mid–2010s for something like this to happen and (b) that this is the main example that we can point to, and that the landscape is not littered with similar stories. That brave new world is not the one we live in, though, and for the one we’re in, this is a good result and we should make the most of it.

John Berger and Susan Sontag’s delicious shoptalk and big hair

What a fabulous conversation this is, between two giants we’ve lost. You see here, in this quiet, quietly intense, intensely curious conversation — in which (a true rarity) the act of listening is every bit as concentrated as the wonderful talk — why these two have long been touchstones for so many people who came of intellectual age in ‘70s or ‘80s. This is just delicious. Drop in anywhere and you find yummy.

I’d never seen this before, didn’t know it existed, and am so grateful to @muhus, who curates one of my favorite Tumblrs, for pointing it out.

 

How Trump’s lies are like Putin’s, and how the press should deal

Donald Trump, photo by Gage Skidmore via Wikimedia Commons

Masha Gessen shows again why she’s invaluable right now.

Lying is the message. It’s not just that both Putin and Trump lie, it is that they lie in the same way and for the same purpose: blatantly, to assert power over truth itself. Take, for example, Putin’s statements on Ukraine. In March 2014 he claimed that there were no Russian troops in newly annexed Crimea; a month later he affirmed that Russians troops had been on the ground. Throughout 2014 and 2015, he repeatedly denied that Russian troops were fighting in eastern Ukraine; in 2016 he easily acknowledged that they were there. In each case, Putin insisted on lying in the face of clear and convincing evidence to the contrary, and in each case his subsequent shift to truthful statements were not admissions given under duress: they were proud, even boastful affirmatives made at his convenience. Together, they communicated a single message: Putin’s power lies in being able to say what he wants, when he wants, regardless of the facts. He is president of his country and king of reality

Trump has exhibited similar behavior, apparently for the same reason: when he claims that he didn’t make statements that he is on record as making, or when he claims that millions of people voting illegally cost him the popular vote, he is not making easily disprovable factual claims: he is claiming control over reality itself. Those puzzled by Trump’s election-fraud tweets, because they seem like sore-loser behavior on the part of the winner, or by his dismissing out of hand the CIA’s findings about Russian interference—against the views of many leading Republicans—are missing the point: Trump was demonstrating his ability to say whatever he wanted about the election, precisely because he had won it

….

After the election, the media’s ability to do its job has been undermined even further. The standard model of reporting requires journalists to give the president-elect say in any news story about him. Thus we now have a series of stories in which reported facts are juxtaposed with a quoted Tweet that dismisses or contradicts the facts themselves. Even a factual narrative can no longer be aired without an immediate challenge contained within the news story itself—and without demonstrating that Trump has once again asserted his power to say what he wants, facts be damned, when he wants, convention be damned, and how he wants, logic and the English language be damned.

It is time to raise the stakes from fact to truth. With a president who lies in order to demonstrate power, fact-checking is indeed useless if it’s the entire story. The media have to find a way to tell the bigger story—the story about the lies rather than the story of the lies; and the story about power that the lies obscure. For mainstream media with long institutional histories, this is even harder than it sounds. The objective style in American journalism often means that nothing can be asserted unless someone in a position of authority utters it. Take Ukraine again: American newspapers have been reluctant to call a war a war because the US administration was not calling it a war. Words like “military adventurism” and “insurgency” had to stand in for the truth. But unless we are willing to live in a world that is not only post-fact but also post-truth, journalists will have to stand up to the soon-to-be president by exposing not only his lies but also other people’s truths.

Get the rest at The Putin Paradigm, @NYRB, by Masha Gessen.

How anger creates a false feeling of power – and thus Trump

How was Trump able to harness so much anger, even though he had proposed no solutions and offered no way to build anything new? Martha Nussbaum offers that he could do this because anger, and the desire to damage the object of  your anger, gives a false feeling of strength and agency. The anger feels like strength; the destruction like a plan. But in the end it can get you nothing, or worse.

From Emma Green‘s Q&A with Martha Nussbaum at The Atlantic, where they’re just killing it lately:

Green: When you look at this year’s campaign—something like a Trump rally, for example—do you see a kind of collective anger?

Nussbaum: Oh, absolutely. Often, we feel helpless in lots of situations in our lives. The way anger gets a grip on us is it seems to be a way to extricate ourselves from helplessness. People—and I think this is particularly true of Americans—don’t like to be passive. They like to seize control. I think what Trump has found, and very cleverly so, is that there’s a lot of helplessness out there in the middle of America: People who feel they’re not doing as well as they want; people who aren’t doing as well as their parents did. Jobs are going to China; jobs are going to other countries. He makes them feel that if they turn their helplessness into rage, they will accomplish something.

Of course, they won’t.

The Anger of the American People