David Dobbs‘ new feature in our October 2017 issue, “The Touch of Madness,” tells a story that is both heartbreaking and uplifting, and all too familiar: A young woman with a bright future temporarily loses herself in mental illness, and finds the fraying of her social bonds to be more durably worse, in some respects, than the underlying condition itself. That young woman, Nev Jones, manages to pull herself out of the bottom of the well, finishing graduate school and going on to become a key advocate and scholar among reform-minded thinkers in the world of mental-health treatment and policy. But it wasn’t easy—and wouldn’t have been possible without the ideas and support of the practitioners and scholars she found shortly after her mental illness derailed her graduate studies.
We talked to Dobbs this week about how he came to this story, and what he learned after his exhaustive, years-long investigation into Jones’ experience, and the broader shift happening in the world of mental health.
Your story describes how the mental-health researcher and activist Nev Jones (and a growing number of others) are pushing for the medical establishment to think about schizophrenia—or related diagnoses of “madness,” as they are known colloquially—in a radically new way. What is new about it, and what makes it so radical?
Nev Jones and other scholars and advocates like her want us to see what they call madness, meaning schizophrenia, bipolar, and other serious mental ailments, less as biological phenomena, and more as cultural phenomena. They’re asking us to see these phenomena not only as a breakdown of brain connection, as they’re typically cast in the West, but as breakdowns in social connection. They want us to see how culture shapes madness: People with schizophrenia simply do worse in societies that define schizophrenia as primarily biological and that isolate people who are mad.
Who is Nev Jones, how did you find her, and how did she come to these ideas?
A few years ago in 2012, after the mass shooting in a movie theater in Aurora, Colorado, I wrote a blog post for Wired about how it’s not coincidental that some of the sickest and most paranoid and angry people who go mad in the U.S. resort to violence—with guns in particular. It’s an expression of madness that does not happen in places that are less gun-oriented and less violent overall. The idea was that culture shapes the expression of madness in that way. It got a lot of pushback, so I did another iteration of the blog post, and in doing that I looked around the Internet to find people who articulated the same idea better than I did, and one of those people was Nev Jones. She had related some episodes from her own descent into madness that were helpful in illustrating what I was trying to say.
To read Dobbs’ story, “The Touch of Madness,” click here.
At the time she was a graduate student and still in the middle of her recovery from a psychotic episode that she had in grad school, after the school bungled a few things in response to her psychosis and proved far from helpful. The societal response in her case seemed to aggravate her deep psychotic state that lasted for some time. She was able to climb out of that by connecting to other people and by studying and absorbing herself in the literature on how culture shapes madness. She connected with other people who studied it and wanted to get the word out. She proved effective at this, finishing her studies in community psychology at DePaul University, and then becoming more well known in what some people call the madness community. These are people who study it and advocate for those who have had it, whom they call people with lived experience.
She ended up getting an invitation to go to Stanford University’s anthropology department. What she was doing was tapping into a couple of decades of increasingly busy and deep work in academia, looking at how culture—broadly defined—affects our view of madness, in particular how it affects the experience of people who have schizophrenia. In Nev Jones, I found someone who was by all accounts one of the most dynamic and exciting experts in the field, and she was also someone who lived through this and had deep insight both from her scholarship and from her experience of becoming very sick for a couple of years, and used her insights on how cultures shapes madness to climb back out of her illness to a state of high-function and happiness.
You write in the piece about the failures of frontline institutions treating people with schizophrenia. What are those institutions, and what isn’t working about them?
(Photo: Twitter)
Usually the first encounter of someone who is struggling with psychosis is the in the ER—or if they’ve expressed it disruptively, or in ways that scare people, the police. ERs and police departments will vary a lot in the resources they can draw upon to help and the time they can give to the person experiencing a first episode. These are not good venues to be the first point of contact. A person entering a hospital will often be sedated and, when they wake up, find that they’re restrained. This is not a good thing to happen to you if you’re feeling paranoid. This is not to say ER personnel and police don’t mean well; it’s a matter of what they’ve been trained for and the actual capacities that their departments are blessed with. This is why the states are trying to get better, so that someone who’s showing signs of psychosis might sooner be referred to somewhere that offers more specialized care. This is the difference between encountering the medical system in an ER room and encountering it in a clinic that is designed specifically to treat someone in the initial stages of emerging psychosis. There is a big push to build more of these places, and for emergency rooms to know about them and refer patients. Housing is also a big component. It’s been shown that, for someone with a schizophrenic diagnosis, if you can simply give them housing, their entire course will go better.
In the U.S., a lot of individual states, under various incentives created by programs that started under the Obama administration, are creating specific plans to find better ways of responding to first episodes.
Zooming out and back to where we started: What does it mean to say schizophrenia is or is not based in biology, versus being based in culture? It might be helpful to define the terms that reformers are using.
Nev and her peers are not making the case that physical characteristics like genes and brain chemistry are not involved. She’d tell you, of course the brain is involved, and we need to deal with that, sometimes with medication. But overlooked in the West’s heavy emphasis on the biological definition of madness and other mental illnesses is how vital social connections are to the experience of mental illness. When people have mental illness in the U.S., especially if it’s a psychotic disorder like schizophrenia, one of the first things that happens is their social networks fall apart and they’re left alone precisely at the time when they most need social connections. If you start to understand these things, it should change how you think society—friends and family, the broader culture, as well as the medical culture—should evaluate and respond to someone experiencing first-episode psychosis.
So in the reformers’ view, is the breakdown in social connections more significant for the outcomes for those patients than the breakdown in biological connections? Or just more significant than we generally credit?
They think that the social and cultural response to schizophrenia is at least as important in how things turn out for the person with schizophrenia as anything biological going on. The social response to someone suffering from schizophrenia has a chance to either ameliorate the problem and help them get better quickly and have the best possible course given whatever biological is going on, or it can aggravate things and make it much worse than it would be if they were treated differently.
To find psychosis treatment programs in your area, try these resources: One Mind Care Connect, NAVIGATE, OnTrack, and The National Association of State Mental Health Program Director’s Early Psychosis Virtual Resource Center.
Nev Jones told you about how a mass shooting involving someone diagnosed with schizophrenia shaped others’ perceptions of her during her first episode, while she was in graduate school. What does the media tend to get wrong about incidents like the one in Las Vegas just this week? We don’t know anything about the shooter’s motives yet, but the conversation on social media has quickly turned to mental illness, per usual.
The connection between psychosis and lethal violence is far weaker than most people imagine, because it gets emphasized so heavily. We keep pointing at these connections, and everyone remembers this handful of people who become psychotic and kill people. The increase in likelihood that someone will become violent because they’re psychotic is about the same as the increase in likelihood that someone will become violent because they have a substance abuse problem. There is one, and it’s statistically significant, but it’s very small.
Where did the conventional wisdom that folks like Nev are trying to revise come from? Describe the intellectual history you explored for this piece.
The picture of schizophrenia that we carry now here in the U.S. goes back a century or more, to some of the first people who described schizophrenia. The scholar Emil Kraepelin wrote about it in the late 19th century, what he called “dementia precox,” or early dementia. He described it as a biological phenomenon—medicine as a whole was moving to a more biological basis, largely for the better, and psychiatry was trying to follow suit. That was the foundation of schizophrenia: It was seen as something that went badly wrong in the brain, and Kraepelin described it as something “lasting.” His view actually changed. But that initial picture of schizophrenia as a serious brain disease in which the brain remained permanently altered—and therefore the person’s prospects were permanently altered—that has remained, to an amazing extent, despite evidence to the contrary.
Where is this issue headed in the next few years?
Aside from the constant warfare over funding for health care in Congress? In the psychiatry establishment—the American Psychiatric Association, for instance—there is a heightened awareness with every passing year. That’s one of the main goals for Nev Jones and other people who advocate along these lines: to increase awareness among the psychiatric establishment, partly so the establishment is more open to making people with lived experience meaningful and full partners in any organization that makes decisions about how to respond to mental health—whether it be a board that’s trying to help create a first episode psychosis clinic, or a clinic that is going to treat or work with psychotic people. Right now, if you have psychosis and you’re in this profession, it’s seen as a reason not to include you in treatment level activity, whereas it should actually be seen as a plus, because of the greater understanding and credibility that you’ll have with a patient. It’s encouraging that the APA is looking at this more.
What advice would you give to people—friends and family, or patients themselves—who think they are entering a first episode of psychosis or have been living with psychosis? What can people do to take care of themselves, or people they know?
An important thing is to try to keep a social network together. For family and friends, realize this is someone who’s not lost forever—this is someone who’s going through a tough time, that might last a few days or weeks, and is at least as likely to come out as is not. Connection is everything, along with good treatment. Try to contact the medical system in a way that doesn’t involve the emergency room. If you feel you’re slipping into psychosis, or something like it, if you can get to community health center or somewhere first-episode oriented, that’s a much better way.
This interview has been edited for length and clarity.
