Culture profoundly shapes our ideas about mental illness, which is something psychologist Nev Jones knows all too well.
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I. THE FABRIC OF REALITY
By the time Nev Jones entered DePaul University’s esteemed doctoral program in philosophy, she had aced virtually every course she ever took, studied five languages and become proficient in three, and seemed to have read and memorized pretty much everything. Small and slightly built, with a commanding presence that emerged when she talked, she was the sort of student that sharp teachers quickly notice and long remember: intellectually voracious, relentlessly curious, endlessly capable, and, as one of her high school teachers put it, “magnificently intense.” Her mind drew on a well-stocked, seemingly flawless memory with a probing, synthesizing intelligence. With astounding frequency she produced what one doctoral classmate called “genius-level reflections.”
So Jones grew alarmed when, soon after starting at DePaul in the fall of 2007, at age 27, she began having trouble retaining things she had just read. She also struggled to memorize the new characters she was learning in her advanced Chinese class. She had experienced milder versions of these cognitive and memory blips a couple times before, most recently as she’d finished her undergraduate studies earlier that year. These new mental glitches were worse. She would study and draw the new logograms one night, then come up short when she tried to draw them again the next morning.
These failures felt vaguely neurological. As if her synapses had clogged. She initially blamed them on the sleepless, near-manic excitement of finally being where she wanted to be. She had wished for exactly this, serious philosophy and nothing but, for half her life. Now her mind seemed to be failing. 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.
“You look at your hand,” as she described it to me later, holding hers up and examining it front and back, “and it looks the same as always. But it’s not. It’s yours—but it’s not. Nothing has changed”—she let her hand drop to her knee—”yet it’s different. And that’s what gets you. There’s nothing to notice; but you can’t help but notice.”
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.
Initially she found these anomalies less threatening than weird. But as they intensified, the gap between what she was perceiving and what she could understand rationally generated an unbearable cognitive dissonance. How could something feel so wrong but she couldn’t say what? She had read up the wazoo about perception, phenomenology, subjectivity, consciousness. She of all people should be able to articulate what she was experiencing. Yet she could not. “Language had betrayed me,” she says. “There was nothing you could point to and say, ‘This looks different about the world.’ There were no terms. I had no fucking idea.”
Too much space was opening within and around and below her. She worried she was going mad. She had seen what madness looked like from the outside. When Jones was in her teens, one of her close relatives, an adult she’d always seen frequently, and whom we’ll call Alex for privacy reasons, had in early middle age fallen into a state of almost relentless schizophrenia. It transformed Alex from a warm, caring, and open person who was fully engaged with the world into somebody who was isolated from it—somebody who seemed remote, behaved in confusing and alarming ways, and periodically required hospitalization. Jones now started to worry this might be happening to her.
II. FIRST READS
Jones already knew more about madness than most people do. In the house where she grew up, in Boise, Idaho, in the early 1990s, she liked to sit in the book-lined living room and read. And even early on, when she was just 12 or 13, she took a special interest in the extensive library of books on philosophy and madness—deckle-edged volumes bought decades before and then left there by her mother’s first husband, a brilliant philosophy scholar who had become deeply psychotic and was institutionalized with a diagnosis of schizophrenia. That had all happened before Jones was born. Now, as an adolescent, she would sit for hours reading this man’s books: Camus and Sartre at first, some Hesse on the side, then, as a high schooler, Plato, Kant, Hegel, Nietzsche.
Reading philosophy helped Jones think. It helped order the disorderly. Yet later, in college, she lit up when she discovered the writers who laid the philosophical foundation for late 20-century critical psychiatry and madness studies: Michel Foucault, for instance, who wrote about how Western culture, by medicalizing madness, brands the mad as strangers to human nature. Foucault described both the process and the alienating effect of this exclusion-by-definition, or “othering,” as it soon came to be known, and how the mad were cut out and cast away, flung into pits of despair and confusion, leaving ghosts of their presence behind.
To Jones, philosophy, not medicine, best explained the reverberations from the madness that had touched her family: the disappearance of the ex-husband; the alienation of Alex, who at times seemed “there but not there,” unreachable. Jones today describes the madness in and around her family as a koan, a puzzle that teaches by its resistance to solution, and which forces upon her the question of how to speak for those who may not be able to speak for themselves.
Jones has since made a larger version of this question—of how we think of and treat the mad, and why in the West we usually shunt them aside—her life’s work. Most of this work radiates from a single idea: Culture shapes the experience, expression, and outcome of madness. The idea is not that culture makes one mad. It’s that culture profoundly influences every aspect about how madness develops and expresses itself, from its onset to its full-blown state, from how the afflicted experience it to how others respond to it, whether it destroys you or leaves you whole.
This idea is not original to Jones. It rose from the observation, first made at least a century ago and well-documented now, that Western cultures tend to send the afflicted into a downward spiral rarely seen in less modernized cultures. Schizophrenia actually has a poorer prognosis for people in the West than for those in less urbanized, non-Eurocentric societies. When the director of the World Health Organization’s mental-health unit, Shekhar Saxena, was asked last year where he’d prefer to be if he were diagnosed with schizophrenia, he said for big cities he’d prefer a city in Ethiopia or Sri Lanka, like Colombo or Addis Ababa, rather than New York or London, because in the former he could expect to be seen as a productive if eccentric citizen rather than a reject and an outcast.
Over the past 25 years or so, the study of culture’s effect on schizophrenia has received increasing attention from philosophers, historians, psychiatrists, anthropologists, and epidemiologists, and it is now edging into the mainstream. In the past five years, Nev Jones has made herself one of this view’s most forceful proponents and one of the most effective advocates for changing how Western culture and psychiatry respond to people with psychosis. While still a graduate student at DePaul she founded three different groups to help students with psychosis continue their studies. After graduating in 2014, she expanded her reach first into the highest halls of academe, as a scholar at Stanford University, and then into policy, working with state and private agencies in California and elsewhere on programs for people with psychosis, and with federal agencies to produce toolkits for universities, students, and families about dealing with psychosis emerging during college or graduate study. Now in a new position as an assistant professor at the University of South Florida, she continues to examine—and ask the rest of us to see—how culture shapes madness.
In the United States, the culture’s initial reaction to a person’s first psychotic episode, embedded most officially in a medical system that sees psychosis and schizophrenia as essentially biological, tends to cut the person off instantly from friends, social networks, work, and their sense of identity. This harm can be greatly reduced, however, when a person’s first care comes from the kind of comprehensive, early intervention programs, or EIPs, that Jones works on. These programs emphasize truly early intervention, rather than the usual months-long lag between first symptoms and any help; high, sustained levels of social, educational, and vocational support; and building on the person’s experience, ambitions, and strengths to keep them as functional and engaged as possible. Compared to treatment as usual, EIPs lead to markedly better outcomes across the board, create more independence, and seem to create far less trauma for patients and their family and social circles.
RECOMMENDATIONS FROM NEV JONES: A good resource for finding psychosis treatment programs in your area.
Work on such programs is especially important right now, as officials of the U.S. mental health-care system, responding to protocols and incentives established by the federal government under the Obama administration, have rushed to change their standard response to first episodes of psychosis. Jones stands to wield a transformative influence on these efforts, both directly through her work at USF and indirectly through her growing renown. Jones talks to anyone she can about why and how we should change our response to the mad. In the past five years she has talked to thousands of individuals touched by madness, scores of public, academic, and policy audiences, and policymakers and mental-health program designers both abroad and all over the U.S., from tiny Vermont non-profits to the City of Los Angeles. Her push to change the wider culture is working. As clinical psychologist Vaughan Bell, of University College, London, and London’s famed Maudsley Hospital, puts it, “She is shaking things up.”
Bell, who met Jones when she gave a series of talks in the United Kingdom in 2012, is one of many who feel Jones brings something unique to the forces of reform. To hear Jones talk, whether to a crowd or one-on-one, is to understand why. When she speaks you get all of her. She leans forward, she locks her eyes on yours in seemingly unbreakable contact, she bores into your thoughts. She gestures almost constantly. Sometimes she holds both palms up, as in an open plea. More often she holds her left hand out, as if offering the audience something, while her right, closed as if holding a pen or a conductor’s baton, drives the point gently but persistently home. Sometimes she enters a preacherly rhythm. “What would it look like,” she asks, “if we focused on the social obstacles people face, instead of just their symptoms? How would it change things if we put people through school instead of telling them to settle for jobs shelving books? What if we listened to what it feels like to be mad, instead of telling people their experiences are just sound and fury meaning nothing?”
In the first years of her speaking and advocacy, Jones sometimes came on too strong. She could press so hard that people pulled back. She’s learned to speak directly in ways flattering to those she seeks to reach. “It’s difficult to be critical but not alienating,” she’ll tell an audience. “It’s difficult to be ambitious but realistic.” Then she’ll tell them, in so many words, that they must change their thinking.
“Nev has a way of saying things,” says Cherise Rosen, a leader in first-episode psychosis response who collaborates with Jones and often sees her speak, “that gets people to see psychosis and schizophrenia in a new way. I’ve seen her pose questions that just stop a room for a moment—and then everyone is working around a new idea.”
Jones stands out because she so effectively represents two things. First, she conveys, as few do, the fullness and urgency of the intellectual and evidence-based arguments for change. And second, she makes uniquely vivid the human stakes involved, both in the destruction of people’s lives—to say nothing of their suffering—and in what the rest of us lose when culture casts them aside. For it happens that Jones herself was once deemed unreachable and flung into her own pit of despair. She re-emerged only because she found a therapist who listened, and a few strands of culture she wove into a lifeline.
Jones set out for DePaul in August of 2007, looking forward to a fresh new chapter. She hoped to free herself of snags and burdens that had long tugged at her. Her life to that point had been one of singular scholastic accomplishment, but in retrospect she sees that the traces and echoes of madness in her family gnawed at her: the pregnant absence implied by all those books; the debilities and isolation suffered by her relative Alex. When Jones was 17, her mother, wanting to leave parts of her own life behind, decided to move to Virginia. Jones decided she’d pass and moved instead to Buffalo to finish high school. Her housing fell through though, so she spent her senior year moving from one tenuous living situation to another. She won a full scholarship to Cornell University anyway.
But the rough year threw her off. Realizing she wanted something more real than school, she got a year’s deferral and joined an obscure non-profit she’d read about. The work, helping low-caste “untouchables” living through civil war in Nepal, proved dangerous and all too real; she saw a young man shot dead on the street, witnessed forced child marriages, and regularly walked past a prisoner’s camp from which she could hear screams of the tortured. Eventually she scraped together enough cash to flee to Japan, where, penniless and sick with parasites, she headed for a Zen monastery she’d read about. Once there, she found she liked sitting in meditation. It cleared the mind. Time disappeared. Winter passed. Spring arrived. Blossoms bloomed. July came. She was due at Cornell a few weeks later. She sat and wrote Cornell a letter informing the school that she had decided to become a zenni—a Zen nun, essentially—and because not even Cornell could offer so high a calling, it needn’t hold her space any longer. (“I wish I had a copy of that letter,” she says now, “because, God, the youthful arrogance.”) A dim, badly focused print shows her eventual ordination more than a year later. Shorn bald, she bows in a white robe to accept her new name, Ekun zenni—”profusion of wisdom.” Almost another year after that, she changed course yet again. Disenchanted with the monastery (a racket, she realized, that she wanted out of), she returned to the U.S. She was 19. In Portland, Oregon, she spent a year painting houses and tutoring illiterate adults until, realizing she was ready, she began to study philosophy.
She studied seriously, ferociously, without quarter. At the University of Oregon she joined with other smart, persistent young women to take over the philosophy club (no small feat in a discipline known for mansplaining) and make it the center of undergraduate philosophy. More important, her studies confirmed that philosophy offered her enough richness and challenge to bring to it all her intensity. She headed for DePaul with a 4.09 grade point average and summa cum laude honors.
She would arrive, it would turn out, all too perfectly positioned to learn how culture shapes madness.
IV. CULTURE’S CURRENCY
One of the first scholars to note culture’s profound effect on madness was Emil Kraepelin, the German neuropsychiatrist whose 1883 Compendium der Psychiatrie (later the Lehrbuch der Psychiatrie) became a widely used guide for psychiatric diagnosis. In the Lehrbuch’s early editions, Kraepelin described madness and most other mental illness as products of faulty brains and biology. He defined what he originally called dementia praecox, or “precocious madness,” as a condition distinguished by hallucinations, paranoia, detachment from reality, sometimes profoundly disordered thinking, and what Kraepelin then saw as an inescapable neural decline. In 1908, another psychiatrist, Paul Eugen Bleuler, recast dementia praecox as schizophrenia, or “split mind,” to connote a mind divided between reality and delusion.
By that time, 25 years after Kraepelin first called it dementia praecox, both Bleuler and Kraepelin saw schizophrenia as less hard-wired and more variable than Kraepelin originally had. Despite that, Western culture today continues to view schizophrenia as something essentially biologically fixed, invariably progressive, and, with rare exception, permanent. Today’s psychiatry remains largely the biocentric psychiatry of Kraepelin’s Lehrbuch—and schizophrenia its most confounding problem.
Most historians rightly cast Kraepelin as the founder of biological psychiatry—the psychiatry of brains, genes, and drugs, which still dominates today. Yet Kraepelin can also be seen as the founder of cultural psychiatry. Kraepelin eventually found that culture plays a primary role in shaping psychosis and schizophrenia. In Java, for instance, he saw schizophrenia patients whose symptoms, while similar to those he had observed in Europeans, differed in their combinations, intensities, frequency, and duration. Fewer of the Javanese patients heard voices or felt other people influencing their thoughts. They felt less initial depression but more agitation. Most strikingly, Kraepelin observed, the most severe cases, of the sort that in Europe filled asylums with permanent residents, were seldom found and did far better than those in Europe.
Once his eye was caught, Kraepelin started seeing culture’s effects everywhere. In his native Germany, for instance, schizophrenic Saxons were more likely to kill themselves than were Bavarians, who were, in turn, more apt to do violence to others. In a 1925 trip to North America, Kraepelin found that Native Americans with schizophrenia, like Indonesians, didn’t build in their heads the elaborate delusional worlds that schizophrenic Europeans did, and hallucinated less.
Kraepelin died in 1926, before he could publish a scholarly version of those findings. Late in his life, he embraced some widely held but horrific ideas about scientific racism and eugenics. Yet he had clearly seen that culture exerted a powerful, even fundamental, effect on the intensity, nature, and duration of symptoms in schizophrenia, and in bipolar disorder and depression. He urged psychiatrists to explore just how culture created such changes.
Even today, few in medicine have heeded this call. Anthropologists, on the other hand, have answered it vigorously over the last couple of decades. To a cultural anthropologist, culture includes the things most of us would expect—movies, music, literature, law, tools, technologies, institutions, and traditions. It also includes a society’s predominant ideas, values, stories, interpretations, beliefs, symbols, and framings—everything from how we should dress, greet one another, and prepare and eat food, to what it means to be insane. Madness, in other words, is just one more thing about which a culture constructs and applies ideas that guide thought and behavior.
But what connects these layers of culture to something so seemingly internal as a person’s state of mind? The biocultural anthropologist Daniel Lende says that it helps here to think of culture as a series of concentric circles surrounding each of us. For simplicity’s sake, let’s keep it to two circles around a core, with each circle embedding and expressing many of the larger culture’s dominant ideas and values—in this case, about what it means to be mad.
The outermost circle consists of a culture’s most tangible, recognizable institutions, practices, concepts, and social structures. This is the realm of government, universities, clinics; of laws about sanity and responsibility; of medical practices, standards, and diagnostic categories; of depictions of the mad in art or literature (Ophelia, Norman Bates) or history (Lizzie Borden, Rasputin, Jared Loughner); of the batshit-crazy assortment of slang we use to refer to madness—cracked, cuckoo, psycho, schizo, nutso, unmoored, unhinged, demented, mad as a hatter, off one’s box, loopy. Virtually everyone interacts with this outer layer of culture. It so thoroughly encapsulates our experience that we can easily forget it’s there.
The next, closer circle of culture is our social world—the friends, family, classmates, fellow workers, and neighbors whose lives rub against ours day-to-day. In Lende’s circular schema of cultural influence, it’s this closer social layer that most intimately and powerfully transmits to us the ideas, values, and opinions of the wider culture around us, while establishing a sort of customized subculture as well. Through this layer especially we observe, assess, and, in turn, influence the culture around us.
Finally, and most intimately and crucially, a central premise of psychiatric anthropology is that we connect to both these layers of culture primarily through individual interactions. The anthropologist Edward Sapir was one of the first to note this. “The true locus of culture,” he wrote in 1932, “is in the interactions of specific individuals”—specifically via “the world of meanings which each … of these individuals may unconsciously abstract for himself from his participation in these interactions.”
In a more expansive view, such interactions, defined broadly, are the base currency of cultural exchange: a long conversation between friends; a joke told and laughed at (or not); an eight-year-old watching Psycho; a teenager reading Virginia Woolf; a colleague who belittles someone you admire; a friend who won’t meet your eye. Such interactions don’t merely express and transmit culture. By constantly filtering, evaluating, and tweaking culture, they create it. Likewise, we sense and evaluate culture, and our places in it, in every social exchange that we take part in, witness, or hear of.
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 is portrayed vividly in a memoir written by a man of Kraepelin’s time, Daniel Paul Schreber. Schreber’s career as a prominent German judge ended when, in 1884, he went mad at the age of 42. His renowned Memoirs of My Nervous Illness, written during a remission and published in 1903, describes with astounding lucidity damned near every torment that schizophrenia can bring. Of these, Schreber’s worst agony was clearly the isolation his treatment forced on him. At the asylum he was placed in (the same sort Kraepelin visited to refine his view of dementia praecox), Schreber was miserable and spoke little. He writes that, while hospitalized there, he was “completely cut off from the outside world, without any contact with my family,” “forsaken,” “left to rot.”
The completeness of this alienation helps explain the anthropologist’s fascination with schizophrenia. Schizophrenia is where culture—Western culture, anyway—disintegrates.
5. CLOSE STUDY
Jones had chosen DePaul partly because the philosophy department had recently hired several young professors strong in feminist and Asian areas of study—an expansion, presumably, of the department’s more traditional continental horizons. She was especially excited about studying with Tina Chanter, a feminist scholar from the U.K. becoming known for her work on “abjection”—the marginalization of people by labeling.
To Jones’ dismay, she arrived that fall of 2007 to find the department not happily in transition, but miserably riven by a microcosmal culture war—part of a larger academic culture war going on in the U.S. then (and now)—that would eventually make the national news. The department was having trouble assimilating (or squashing, depending on whom you asked) the new diversity it had hired. Namita Goswami, for instance, an assistant professor specifically recruited for her expertise in Asian studies, would suffer tenure denial that she characterized as discriminatory, retaliatory, and contrary to department policy; DePaul said she was just a poor scholar. She was one of four women in the department who would eventually sue DePaul after being let go. (Three settled with the university in 2012, on terms kept confidential; the fourth case, Goswami’s, was settled out of court, on terms kept confidential, in 2015.)
The graduate students, meanwhile, found they were often judged by any position they took in these culture wars, and by their alliances and interests. Their annual reviews before faculty committees were “like trials,” says one of Jones’ classmates, designed to expose whose side you were on.
Jones, the lone woman among her entering cohort of a half-dozen new Ph.D. candidates, was irked by this infighting, which reflected divisions along lines of not just gender but philosophy and politics. Yet she also found the battle energizing, and, engaging it with her usual intensity, took pleasure in the camaraderie she quickly found with some of the other women in the department, both graduate students and professors, including Goswami and Chanter. Unsurprisingly, this put some distance between her and some students and faculty. To an extent, of course, this only strengthened her allegiance with those challenging the departmental patriarchy.
Academically, meanwhile, she was impressing everyone with how fast and deeply she read, how forcefully she wrote, and how quickly her mind worked. She was killing it.
And Jones found Chanter to be everything she had hoped for—an inspiration, a protector, and a surprisingly warm mentor, despite her reputation as distant and cool. Jones fell for Chanter as only an ardent student can fall for a seemingly perfect master. The affection seemed to her mutual. Chanter was the “epitome,” Jones wrote later, “of everything I wanted to be.”
Yet even as Jones was impressing everyone and bonding with her fellow feminists, she was beginning to feel a resurgence of the memory and cognitive issues that troubled her, and, as the year went on, deeper and more vivid distortions in reality’s fabric. These began to go well beyond squishy sidewalks and vaporous walls. Her imagination seemed to grow powerful enough to make imagined things real, and both those imagined things and real things themselves began to seem more powerful and autonomous. Her ideas and thoughts started to seem like actual objects apart from her, existing in space, so that anyone could come into contact with them. Her thought-objects and other objects often took on auditory qualities, and she couldn’t tell whether she was imagining the sounds or perceiving them. She felt a terrifying sense of exposure, and, to protect herself, increasingly went mute.
Early in this period she grew worried enough to see a psychologist. After a few visits, the psychologist told Jones she couldn’t figure out what was amiss and could do nothing for her. Jones stopped going.
As winter set in and her perceptions grew stranger, Jones struck her classmates as increasingly odd. Now and then she stared into space and seemed oblivious to her surroundings. Jones now recalls that, at some point that winter, during one of her weekly visits with Chanter, she confessed to Chanter some of the perceptual anomalies she was experiencing. Chanter was concerned enough to walk her straight to the student counseling center.
“Are you hearing voices?” the director asked. Jones was not. She disliked this query and what seemed to her its accusatory tone. It felt like both a checklist item and a trick question. One that could bring trouble. She did not return to the counseling center.
Through the long winter, walking through darkness and dirty snow to reach the halls of philosophy, Jones battled to control her thoughts but continued to do well in class. At first, says Azadeh Erfani, a fellow philosophy doctoral candidate whom Jones became close to that first year, Jones just seemed anxious and depressed. Yet even as Jones managed to hide her deeper confusion, her perceptions became more peculiar and her social relations more taxing. She seemed to be wandering into unnavigable murk. At some point that winter she confessed her growing confusion to Erfani. In March, when many of the department’s women gathered at a restaurant brunch to catch up after a break between semesters, Erfani found Jones sitting alone on the carpeted steps leading to one of the side rooms. Morose and confused, Jones was barely able to speak. Erfani took her home.
Back in September, when the two women had begun their friendship, Jones had told Erfani about Alex’s schizophrenia, and confided that she sometimes worried about going mad herself someday. Now it became clear to both women that this might be happening.
6. FIRST CONTACT
In the weeks after Erfani rescued Jones from the restaurant steps, Jones, aided by Erfani, resumed her search for help. This was a fraught venture, because, in much of the Western world, an initial medical visit often accelerates a first episode. A 2013 review, for instance, found that a first hospitalization often caused psychotic patients distress rivaling that caused by the symptoms that drove them to the hospital. The care could wreak as much havoc as the ailment.
Irene Hurford, a psychiatrist and psychosis-response expert at the University of Pennsylvania, says it’s easy to see why. The initial admission to an emergency room or hospital, she says, is far too often traumatic. Many ERs, overwhelmed to start with and facing patients long distressed and long neglected, routinely resort to physical and chemical restraints. Many staff, reflecting the culture around them, see first-episode psychosis as a gate to doom—and convey that to the patients. “They are told all sorts of nonsense,” Hurford says. “‘You’ll be on medicine the rest of your life. You have to accept you have a brain illness.'” In reality, early symptoms of schizophrenia may indicate anything from a one-time event to the beginning of either an occasional episodic struggle or something deep and chronic. It runs the gamut. This is why best practice, as one 2001 study puts it, involves not a rush to judgment but “an embracing of diagnostic uncertainty.”
Yet many patients encounter not uncertainty but a view of schizophrenia as biologically hard-wired and inevitably progressive—”the terminal cancer of mental health,” as Richard Noll described the conventional wisdom from Kraepelin’s time, in his book American Madness: The Rise and Fall of Dementia Praecox. In patients, this view encourages hopelessness and despair; in friends, acquaintances, and family, a rush to the exits. In the West, the mere word schizophrenia can be enough to make people feel crazy and alone.
By contrast, multiple lines of research find schizophrenia is less crippling in developing countries. This is partly because, in many of these countries, people are likely to attribute madness not to a broken brain but to more normalized disturbances, such as temporary infestations of bad spirits. In his book Crazy Like Us: The Globalization of the American Psyche, Ethan Watters describes how, in Zanzibar, schizophrenia is seen as an unusually intense inhabitation of spirits, and psychotic episodes as passing phenomena. In one household Watters came to know well, a woman with schizophrenia, Kimwana, was allowed to drift back and forth from illness to relative health without much monitoring or comment by the rest of the family. Because her swings from psychosis to wellness and back were not treated as the disappearance and return of her “self,” as is common in the West, Kimwana, Watters writes, “felt little pressure to self-identify as someone with a permanent mental illness.”
Kimwana’s case resembles some of those that Kraepelin saw in Indonesia in the 1920s. In 1967, the transcultural psychiatrist Wolfgang Pfeiffer followed Kraepelin’s tracks there and found the same thing. In Indonesia, as the comparative psychiatry scholar Wolfgang Jilek later described, Pfeiffer found that “hallucinations … were accepted by the tradition-directed patient with equanimity and not reflected upon with delusional elaboration. Chronic residual states were well integrated into traditional society.” Madness was still madness. But when accepted as something that would pass, it often did.
Jones, hunting for help in 2008, desperately needed a place that would view madness that way. Like most patients in America, she found it hard to find.
The first place she visited with Erfani was a large hospital emergency room. Jones recalls the visit with a darker tone than Erfani does, but both agree the visit did not go well. As Jones remembers it, a nurse took the two of them into an exam room, spent most of her time querying Erfani, as if Jones’ own account would be useless—”as if I wasn’t there,” Jones says—and when she finished and grabbed the doorknob to fetch a doctor, turned to Erfani and said: “I’m not the one who makes the diagnoses. But I can tell you right now, having seen a lot of these people, I think she’s a schizo.” She concluded by saying, “You should have taken her right to Cook County”—presumably because Cook County’s hospital treated the indigent and had a locked ward. To Jones the whole thing felt like a dramatization of Foucault’s warning about medicine branding and outcasting the mad. The two friends waited until the nurse was down the hall, then slipped out of the building.
Erfani was becoming worried that Jones might harm herself. She was particularly alarmed at a recurring hallucination that Jones described: A man would point a gun at her head and talk to her. Jones claimed that this didn’t bother her. She said the man held the gun to her head in a “non-threatening” way. Erfani found this hard to credit. Jones told Erfani that she sometimes doubted whether Erfani or she herself or anyone else really even existed. Perhaps she was imagining everything, not just this man with the gun. Erfani began to worry that Jones was listening as much to the guy holding the gun as to the people actually around her.
After much calling around, Jones found the number of a local “first-episode” clinic—one specifically for people having first psychotic breaks—and phoned just before closing time. A therapist answered. “Of course I can see you,” she told Jones. “Can you come in at eight tomorrow morning?” Jones went in the next day and had a warm, supportive visit with the therapist, whom we’ll call Dr. Holland. Holland became Jones’ weekly talk therapist. Jones also saw a prescribing psychiatrist every few weeks.
Over the next six years, Holland proved smart, persistent, and unfailingly empathetic, and the clinic quite literally a lifesaver. Yet Jones, like so many, would find her diagnosis disorienting. Her psychiatrist told her, during her first visit that spring of 2008, that he had little doubt she was in the early stage of a psychotic episode. The episode might prove either brief and shallow or long and intense. Jones asked whether she had schizophrenia. He said she might. Jones was devastated. She alternated, she says, between “They’re wrong!” and “My life is over.”
In the weeks following, her delusions and hallucinations intensified. The sidewalks grew so soft that she sometimes overcompensated and stumbled. The meds the doctor prescribed made her feel jumpy and disconnected.
Jones knew she was acting odd. She worried first that her classmates could tell something was off, and then, as her self-consciousness slid into paranoia, that they could read her thoughts. She began to have vague and then troublingly specific visions of harming herself. Later she would recognize these, as well as other fantasies still to come, as examples of a psychotic phenomenon that Eugen Bleuler called “double registration” or “double bookkeeping.” In double bookkeeping, the psychotic person keeps two ledgers. She can perceive a hallucination or fantasy as utterly real to her but also not real to the rest of the world, and thus not something that she should really act upon. Jones later explained this idea to me as we were walking across the Stanford campus. She might well see a red rabbit grazing on the lawn before us, she said, and that rabbit might seem as thoroughly real as my presence next to her. But she would also recognize that the rabbit was not real to the rest of us, and that I was, and that she should not expect me or anyone else to perceive it. Likewise with the stone walls whose double nature Jones had so vividly perceived, stiff enough to break her toe but vaporous enough to blow into particles with her breath. In this double-bookkeeping version of reality, you could indulge the reality shown on the private ledger even as you lived according by the ledger that everyone else read from. It was usually fantasy, not intention. So it is with even many of the violent fantasies that some psychotic people have. While such fantasies are not uncommon (in non-psychotic people too), psychosis raises the likelihood of violent behavior only modestly, to roughly that of people who struggle with substance abuse.
Jones was still attending classes. Some of her professors had no clue anything was amiss. Most of her fellow students knew better. “She wouldn’t sleep,” Erfani says. “She’d do all these readings to prepare. She felt she needed to stay in the program no matter what. From our perspective, at the time, that didn’t seem like the best idea.”
Jones just hoped to last until summer, then regroup.
8. LOCKED OUT
Monday, April 21st, 2008, was a particularly fine spring morning in Chicago, with a warming sun and magnolia blossoms scenting the air. The kind of day that, after a tough winter, can seem a miracle, lifting one’s spirits and hopes. Jones, ready to start the week’s classes and only a few weeks away from summer, was enjoying the walk to campus when she noticed she had a voicemail from Dr. Holland.
Holland seldom had reason to call. Jones became anxious as soon as she saw the message. She would later see the call, and the news it relayed, as the moment in which she went from clinging to a safe place within a small subculture to being flung away from it. The effect would prove catastrophic and lasting.
Holland’s message said to please call immediately. When Jones reached her, Holland told her she had just spoken with Tina Chanter, and that Chanter had asked her to tell Jones that she should not come to campus until further notice, and that, if she did, she risked being intercepted by security officers. When Jones asked why, Holland explained that Chanter said that someone on campus—possibly a student, possibly faculty—had apparently expressed concerns about Jones’ behavior. (Chanter, when offered multiple chances to confirm or correct a detailed chronology of her role in this story, replied simply that her memory of the events does not match the version reconstructed here. She declined to be more specific.)
Jones was stunned. Her behavior? She thought she knew damn well what that was supposed to mean. Just two months before, about the time Jones’ confusion was starting to be noticeable, a student at Northern Illinois University, an hour west, had shot 22 other students, killing five, before killing himself. Ten months before that, a mentally ill student at Virginia Polytechnic Institute and State University had shot dead 27 fellow students and five professors. Both stories received massive media attention. A fear of such disasters spread across campuses all over the U.S. It was a bad time to act unhinged. To some around her, it seemed, Jones was a bomb waiting to blow.
Jones, furious, hung up on her therapist, sat beneath a magnolia tree and, between tears, furiously called people. She phoned and emailed Chanter but got no response. She got a message to Namita Goswami, the Asian studies professor who would later sue the university for being fired, who replied saying she’d speak to Chanter and get back; Jones doesn’t recall hearing from her again. Jones next tried Frank Perkins, one of the few male faculty members she liked. Perkins and Jones were due to travel together to a conference that coming weekend. Perkins responded that Chanter had asked him not to take Jones to the conference, lest there be “catastrophic consequences.” She called other faculty and friends, too, but no one answered. No one called back. She had become the unwanted mad. Every effort at contact seemed to isolate her further.
For hours she walked around “in a kind of blank, devastating reverie,” as she recalled later, “not wanting to go home, not knowing what to do.” She boarded the elevated train that ran north along the Lake Michigan shoreline. She would ride that train a lot that month, gazing at the landscape. The speed of everything passing by, she later wrote, “served as a kind of escape from what otherwise seemed a life that had just come to a full stop.”
Sometime the next day, Jones believes it was, she walked to Chanter’s office to ask what had happened. Chanter was out. Someone in the next office said Chanter was in class. She’d return soon. Jones sat in a chair down the hall.
“The minute she saw me,” Jones says, “she races by me into her office, closes the door.” Jones, choking back tears, knocked. As she remembers it, Chanter opened the door a crack and said: “I refuse to talk to you. Get out. Leave campus. Call your therapist.”
“Tina, please talk to me,” Jones recalls pleading, in tears. But as Jones recalls it, Chanter just repeated, “Call your therapist,” and pushed the door shut. For Jones, the thump of that door closing still resounds.
To this day, Jones does not know why she was barred from campus. She struggled to make sense of it. What had she said or done to provoke it? Who had said something to Chanter—if anyone even had? And what on Earth had they said? For at least a week she was told almost nothing. The mad, found guilty of losing touch with reality, are the last to be told what’s going on.
Even years later, no one with first-hand knowledge—not Chanter, not Holland (citing patient-confidentiality ethics), nor any others in the faculty or administration—will talk of what happened that day, or of key events that followed. We (and Jones) must rely heavily on the triangulation of distant memories, a handful of documents, and reasonable speculations.
If at times this article reads like a single-source account, it does so for two regrettable reasons: first, because much of this is a story of horror experienced in solitude; second, because only a single source, Jones, has been willing to speak regarding certain key events—perhaps the most crucial in her life—in which others played critical roles. Most of the DePaul faculty mentioned in this story, as well as the administration, were sent detailed chronologies of the events described here and declined repeated offers to correct, confirm, or comment. The only comment from DePaul was a statement made via email from the administration that the university has “robust policies and procedures in place for working with students with disabilities to provide reasonable accommodations.”
Though Jones has forgotten a lot, there is much she remembers. And with a few exceptions, as noted, whenever I have been able to check her memories against either documentation or the memories of those few who would speak about this period, her account almost invariably matches the record.
Yet if some things remain foggy, or dependent on only one account, a few things are clear about the weeks running up to the phone call she received amid the magnolias in April of 2008. Clearly everyone felt at sea. Clearly Jones was in trouble. Some of her schoolmates were trying to help her. And although I could find no report that Jones had made any specific threats in the weeks before she was barred from campus, it appears that someone told faculty—or at least Chanter, the faculty member closest to Jones—that they felt uneasy with Jones’ behavior. “People were alarmed,” Erfani says.
Clearly this put Chanter in a hard spot. Complicating Chanter’s position was her role as one of two people, along with Erfani, whom Jones had given Holland permission to talk to. We have no evidence Chanter ever learned anything from Holland; but even if she did, she could not ethically have shared information gained confidentially from Holland with other faculty or students, even if that information was reassuring. Today Jones recognizes the difficulty of Chanter’s position, and forgives her. She sees that, in a fraught situation, Chanter almost surely acted from a combination of genuine concern for Jones and pressure from others to do something.
What this meant, however, was that, as Jones spiraled into crisis, almost no one other than Jones’ therapist and psychiatrist knew what to do—and neither of them had any clout on campus. Thus culture took its course.
In retrospect it’s clear that, in the weeks running up to her phone call with Holland, Jones had entered the doomed space described by Erving Goffman in his classic 1963 study, Stigma: Notes on the Management of Spoiled Identity:
The more there is about the individual that deviates in an undesirable direction from what might have been expected to be true of him, the more he is obliged to volunteer information about himself, even though the cost to him of candor may have increased proportionally.
What candor had Jones offered that cost her so dear? Jones, searching through the dimness of memory, has come to believe that the simplest, most likely explanation for her being barred from campus is that one particular hallucination she confessed to one person, or perhaps two or three people, got badly misunderstood.
A week or two after she was told to stay off campus, Jones says (we can’t confirm this, because no one else will talk, so it remains very much second-, third-, and fourth-hand), Art Munin, then the assistant dean of students, having intervened to clear the way for Jones’ return to class, told Jones that Chanter had told him that someone had told her that Jones had told someone something that made them think Jones wanted to blow up the philosophy building. Erfani and others recall hearing that such rumors had triggered Jones’ banishment. Jones, meanwhile, feels certain she never made such a threat; among several schoolmates and professors I talked to, none had heard of her doing so.
Jones wonders if the rumor of a threat stemmed from remarks she made about her perception that the stone walls of the philosophy building were actually atomic aggregations so vaporous that if she “blew on it, the wall would come apart.” She distinctly remembers, and Erfani confirms, that she described this perception to Erfani; but Erfani understood it as a perception, not a threat. And although Erfani does not remember sharing Jones’ hallucination with anyone else, both she and Jones now wonder whether, in some transmutational chain of retellings among other students, or perhaps even as the word of this hallucination reached Chanter’s ears, Jones’ vision of puffing away a wall of weak atomic links had morphed into a scarier vision of her blowing a building to pieces with a bomb.
In other words, Jones’ career and life may have been derailed because a game of telephone went bad.
Although Jones’ exile lasted but a week or two, this brief banishment, she would later record, “set in motion a chain of events that were to forever change my life, perhaps as profoundly as the ‘diagnosis’ of schizophrenia itself.” It released a set of forces that no one understood and no one knew how to stop. And it may have done so not because Jones actually threatened violence, but because the culture around her was so ready to equate psychosis with violence that her diagnosis made her a threat. One of the questions here that comes quickest to mind—what did Jones do to provoke such a reaction?—may be a red herring. Her mere passage into psychosis may have been enough to provoke expulsion.
When Jones returned to campus after 10 days or so, she says, virtually none of her fellow students and few of the faculty would even look at her. As her classmates pulled back, Jones withdrew further. “She was just kind of gone,” says Kieran Aarons, a fellow philosophy graduate student who had also known Jones as a fellow undergraduate in Oregon. “She wasn’t disrupting anything, or having outbursts. But she was very clearly not in the room.”
In the weeks after her return, Jones became estranged not just from Chanter but from the rest of the circle of classmates who’d formed around Chanter. She eventually lost even Erfani, with whom she hasn’t talked since. Because it pained Jones to see her professors, she studied their schedules so she could time her entrances and exits from the building so as to avoid them. When that wasn’t good enough, she would enter a bathroom and lock herself in a stall for long periods of time, unable to face anyone. People noticed this too.
At this point she started having disturbingly vivid visions of killing herself. She felt utterly crushed, helpless, and alone.
“Nev was surrounded by people who knew nothing about mental illness,” Erfani says. “We didn’t know what to do, and we made a lot of mistakes.”
For all this, Jones holds her classmates and Chanter ever less to blame. “In my heart,” she says now, “I think Tina was horrified by what happened, both then and later.” She knows Erfani, too, was trying to do her best amid confusion and fear. She recognizes that, in a society terrified of madness, banishment is the default mode.
And banishment it proved. A circle of friends is itself a wall, the bonds of friendship its mortar. It surrounds and includes us. It shields us from outside threats. By bracing us in our distress, it guards us from our doubts and fears. But the bonds of such a wall can prove weaker than they appear. Jones’ had blown apart.
Jones, getting sicker all the while, staggered through that spring semester of 2008, and ended up taking one medical incomplete. That summer she took and aced a course in abnormal psychology. Before her lay the fall semester and the problem of how to get through her second year. After talking it over with Rick Lee, the philosophy chair (who’d just returned from a year of sabbatical), she began her second year by taking three courses, two of which, neurobiology and psychology, were outside the department. As school began, she says, she was in a bad state: She could scarcely make it to the end of a sentence, whether reading, talking, or listening. She told a friend that sometimes when she tried to read, the words would fly around and she would have to grab them and put them back in place. She felt “suspended linguistically, suspended in life.” Her turmoil that second year shows in her transcript, which registers light loads her first two semesters—three classes each semester, all A’s—and then, in the third semester, that spring of 2009, three incompletes.
No classes that second summer. Yet despite being in what she describes as a state of deep psychosis, she submitted at the beginning of her third year a remarkably lucid self-evaluation for a crucial annual progress review she would face the following month before the department’s graduate affairs committee. This was the annual review that Erfani and many others found so confrontational.
“I would be the first,” she wrote the committee, “to underscore the underwhelming nature of my performance … over the past year. There would be little point in marshaling excuses of any kind, though obviously there are significant extenuating circumstances that have made my academic life especially challenging.” She asked to be allowed to remain in school over the coming academic year, taking just one class per quarter, so as to finish a master’s degree rather than a Ph.D. This arrangement, she wrote, would allow her to keep her modest job and essential health insurance.
Of the actual review a few weeks afterwards—a meeting in which she faced a room full of faculty—she remembers only fragments. She recreated the meeting on her blog:
First, the decision: we are dismissing you, in fact you may not, even as an unfunded student, enroll in any further classes. From a professor I had, until that point, trusted completely: “the decision strikes the committee as simple—you clearly do not have your act together and we have no reason to believe you ever will.” Another professor: “you are a burden on the instructors.” And then some additional reasons, faculty talking more to each other than me: “look at all the withdrawals”; “she hasn’t attended a departmental lecture in almost two years”; “unambiguously uninvolved in the life of the department.” Someone (I’m not looking at them) interjects: “perhaps allowing her just one more term…?” Another “…keeping in mind that if we do this she will immediately lose all her health coverage….” Then: “Absolutely not, but we can discuss the reasons after she leaves.” Clearly she will not succeed. Now or ever.
RECOMMENDATIONS FROM NEV JONES: General information for families, patients, young adults, providers, or policymakers.
This and similar recollections from Jones are almost all we have of this meeting: how a professor friendly to her, for instance, and who had told her beforehand everything would be OK, sat silent, stiff, and pale, and looked away whenever Jones looked at him; how another professor told her point-blank, “You have no future in philosophy.” None of the several faculty who participated in the review have responded to multiple requests for interviews about what happened there. The sole record available is a letter that Avery Goldman, writing as committee chair, sent Jones on October 12th, 2009. The letter informs her, without any explanation, that the committee had denied her request. They offered to credit some prior classwork to fill out her master’s requirements without further study. But they told her explicitly she could no longer take classes.
If her exile two Aprils before had thrown Jones down a well, she now collapsed at its bottom and lay drowning. She could not think. Could not read. Could not tell who was real and who was not, what was actually happening and what she was imagining. Could not tell whether such distinctions even mattered. When she looked people in the eyes, she felt them enter her mind and read all her thoughts. She felt both formless and isolated, selfless and alone, borderless, “as if erased.” For one period many days long, possibly weeks, she surrendered completely to her demons and delusions. “I didn’t even get out of bed,” she said later. “And when I say I didn’t get out of bed, I mean I did not get out of bed. There were days I could not summon the energy, or perhaps the will, to walk from the bed to the bathroom.”
In retrospect, she says, she surrendered to a dynamic she had examined in one of the last philosophy papers she managed to finish, written when things were unraveling the spring before. Fifty years earlier, the British psychotherapist Donald Winnicott had proposed that the elaborate delusional worlds that typify schizophrenia in Western cultures are not arbitrary structures of a broken, schizophrenic mind, but a complex set of mental fortifications the person builds to protect herself against the real world, which she worries will seize and lock her away because she is insane. It’s madness as an Escherian stairway to hell.
Years later, Jones would find this vision a credible explanation of her own descent into madness. For a year or more after her expulsion, she often stayed in her head’s delusional worlds not because she had lost her mind, but because her mind felt safer in delusion than in her ruined reality.
“Everything is on fire, in flames, burning,” she wrote in her diary. “My thoughts are everywhere … a cloud, a pack of birds, a pack of wolves.”
Early in the summer of 2010, more than a year after she’d been expelled, Jones opened her inbox and found an email from a DePaul psychology professor she had studied with two summers before. Back then, in 2008, the professor had joked to Jones she should get her Ph.D. in psychology, because it was so much better than philosophy. Now she was making an offer: An incoming doctoral student had suddenly withdrawn, and they had no time to find a replacement through the usual channels. It was a funded spot, a free ride. Would Jones like to take it?
“I thought it was a cosmic joke,” Jones says. The odds of getting a last-minute offer like this, especially for someone recently dumped by the same university, were close to nil. Her initial reaction was, “There is no way I can do this.”
“What do you mean?” Holland asked. “Of course you can do this. You’re going to do this.”
She did. “I went back and said: ‘Thank you. Yes. I will.'”
Jones had many rough times in the first two years of her new doctoral campaign. But she was now heading up rather than down. She again had work she loved. She found several new colleagues of like mind in the department, including a new mentor and friend, Mona Shattell, a nurse who worked in community psychology, and who shared Jones’ evolving view of schizophrenia as a failure less of neural connections than of social and community bonds. Jones had stopped taking antipsychotics after she and her psychiatrist agreed they didn’t work for her, and she felt better for it. She completed her Ph.D. in four years.
The other lifeline was connection. Primarily through the Internet, Jones soon found other students, who, like her, had been diagnosed with schizophrenia or another serious mental illness and were pursuing graduate work. Like Jones, they wondered whether fellow academics struggled with psychosis and how they got through. Together they started a Google Group that soon included 40 or 50 other young academics trying to pursue academic careers despite their psychiatric diagnoses. Some were getting effective treatment. Some were not. For many of them, Jones says, the online group was the first time they’d been offered a connection back to the rest of the world. Outside the group they were outcasts. Within the group they were professionals.
Jones had been keeping a blog, “Ruminations on Madness.” Although she later took it down, she used it for a time as “both beacon and homing device,” as she once put it, to build a network of like-minded peers. On the blog, written under a pseudonym, she could safely explore and come to terms with the innermost core of culture. This is the circle of culture that each of us carries within, in which we embed many aspects of the circles composed of our friends, our family, our social worlds, and of the outermost circle of institutions and their structures. Some of these embedded values and ideas—the ones we carry as self-stigma—can serve as models of behavior that can cripple us or separate us from others. They’re hard to set aside if we can’t take them out and examine them in a safe place.
For Jones, a key event in this healing process came in July of 2012, when a 24-year-old named James Holmes shot 82 people who were watching a Batman movie in a cinema in Aurora, Colorado. Twelve of them died. Holmes had withdrawn the month before from a University of Colorado Ph.D. program in neuroscience because he was battling mental illness. In the days before the shooting he had sought care but not received it. He was later diagnosed by one psychiatrist as having schizotypal personality disorder, and by another as having schizoaffective disorder.
James Holmes had enough in common with the Nev Jones of 2009 to present the Nev Jones of 2012 with an uncomfortable reminder of how toxic madness could become when society rejects and excludes the afflicted.
“I suspect it would strike most people as ‘mad,'” she wrote on her blog, “particularly perhaps, those who know me, to identify any sort of kinship, any common bond, with James Holmes, the ‘Batman shooter,’ mass killer, and ‘psychotic son of a bitch,’ as Colorado Congressman Ed Perlmutter has put it. After all, I cry even over the deaths of the small birds my cats carry in from the deck…. And yet school shootings, or acts of extreme violence in which the perpetrator is or recently was a college student, have punctuated my life in strange & powerful ways. I was diagnosed with schizophrenia just a month after Steven Kazmierczak (quickly identified as ‘schizoaffective’) shot six people to death [including himself] on the campus of NIU, just an hour [from] Chicago.”
Back then, in the weeks and months of her worst alienation after being shown the door at DePaul, Jones had become fixated on an image of herself dead, sometimes in a pool of blood, sometimes hanging, at the entrance door of the philosophy building. A suicide, obviously, to end her excruciating misery—but also a statement of despair, and a refusal to be cast away.
Like Holmes and others who’ve turned their madness outward, Jones had felt what seemed an insupportable anguish at society’s alienating view of her condition; and her ideas about expressing it rose from models of behavior reflecting a violent culture. Yet the crucial difference between Holmes and Jones—between Holmes and the vast majority of people experiencing psychosis—is that, while Holmes had sought to harm others, Jones had turned her madness on herself.
12. HOW TO BE MAD
Jones’ post about Holmes proved a critical step in ending her isolation and bending her trajectory back upward. It helped her see how culture shaped her inner torments. It allowed her to safely confess some of her worst memories and doubts in a way that disarmed them.
Jones’ blog posts also connected her and her ideas with wider circles of culture, including in media and academe. These connections provided her with new sources of affirmation and support, and brought her new friends. This attention opened up social and scholarly circles in which her ideas on madness found constructively engaged peers and critics. Among them was Stanford’s Tanya Luhrmann, a prominent anthropologist who studied how madness expresses culture. Luhrmann eventually met Jones and offered her a postdoctoral fellowship with the culture and mind group in Stanford’s Department of Anthropology. Thus began, Jones says, a period in which “my world got bigger.” And safer.
In June of 2014, four years after she hit bottom, and with a fresh Ph.D. in community psychology in hand, Jones packed her stuff and moved to Stanford. She quickly became an international influence, lecturing all over the U.S. and U.K. and consulting with federal and state mental-health agencies that were overhauling programs for responding to schizophrenia and psychosis. She continued this work after she left Stanford and continues it now at USF. She has thus tied a line from her innermost, private circle of internalized culture to social and professional circles through which she is directly changing still-larger institutional circles of culture beyond.
It’s not exactly a friction-free process. As a person of “lived experience,” as advocates call those who’ve felt madness’ touch, Jones regularly faces the tendency among fellow mental-health professionals to discount ideas put forth by people who’ve been mad. “We call it stigma,” says her mentor and colleague Mona Shattell. “But let’s just call it discrimination.” The extent to which many in the mental-health field disregard the experience of colleagues who’ve had mental illness, Shattell says, “is just terrible—we haven’t made much progress.”
Another colleague, Durham University’s Felicity Callard, sees the same thing. She says professionals who meet a colleague of lived experience at conferences or meetings tend to reduce the person in their minds to “an exemplar of a patient.” Even superb presentations “become simply the testimony of someone who has used psychiatric services.”
But the power of Jones’ thought and presence, Callard says, “makes it very hard to turn Nev into an n of one.” And to the extent such prejudice rises from fear that the once-mad colleague will ignore realities they’d rather not face, Jones’ willingness to confront not just her own experience but seemingly any contradiction, whether in herself or others, simply overrides it. This galvanizes others who’ve suffered psychosis. “She shows what might be possible,” Callard says. “She enables others to feel things can be said that we thought couldn’t be said.”
The first time I met Nev Jones, in 2015, we sat in a Starbucks in Boston, and she described how hard it was to watch, a few years earlier, her relative Alex emerge from and then fall back into psychosis. This happened when Alex’s brother became terminally ill. Alex, not well then, showed zero emotion on hearing this news, and showed none even when discussing the doomed man’s fate right in front of him. Yet while Alex’s brother was still alive but close to his end, Alex went back on medication. The medication wrought an immediate change. Jones, visiting Alex’s brother, watched as Alex, with a face full of sadness and sympathy, touched the cheek of this dying brother as tenderly as one person can touch another. Jones beheld again the loving, open person she had known as a child. When Alex later relapsed into madness, Jones wept for days.
Many months after Jones told me this, as I was finishing the reporting for this story, I thought about that conversation and emailed Jones to ask one last question: Did she ever worry about relapses? In the U.S., one in 10 people diagnosed with schizophrenia eventually commits suicide. “They kill themselves,” says Roberta Payne, the author of the extraordinary memoir Speaking to My Madness, “because they can’t stand the pain anymore.” Back in 2009 and 2010, Jones had nearly joined them. Yet when I asked her about relapses, she said she had pretty much stopped worrying about getting sick again. She knew it could happen. But she had become too busy to worry about relapses, and it was no use worrying anyway. “If your experience includes ‘psychosis,'” she wrote, “that becomes a part of who you are. It’s now a core part of my identity. It has given me such a strong sense of purpose.” She doesn’t mind, for instance, that she still experiences some stretches and wrinkles in reality’s fabric. She accepts an occasional soft sidewalk or vaporous wall. She can talk to someone and not fret if their words seem to take a moment to reach her ears.
“It’s like a heightened form of what they tell you before your first violin recital,” she told me. “If you mess up, keep going. People are only going to notice if you stop playing.”