If you’ve been following the news over the last week or so, you’ve likely read of Zoraya ter Beek, the young Dutch woman recently approved for euthanasia on the grounds of mental suffering. 

As a story in The Guardian explains, Ter Beek has struggled — with trauma, depression, anxiety and more — since childhood. None of her treatments worked. Not medication. Not 30 sessions of ECT. After all of that, she’s still suffering, so why wouldn’t she want to die? Why wouldn’t she want a way out, even as she acknowledges anticipatory guilt over the pain she’ll be causing her family? 

It’s hard — no, impossible — for me not to recall my beautiful sister Lucy, who was just two years older than Ter Beek when she left this world by suicide after far too many years of struggling. None of Lucy’s treatments worked. Not medication. Not her many sessions of ECT. 

But what I realized, belatedly: Those treatments only made things worse. As I’ve written about before, they only caused her more pain. The suicide attempts, manic episodes, depersonalization, ants crawling up and down her legs, more than a dozen hospitalizations — all of that occurred after she was put on drugs, initially for depression, and then routed into a system that diagnosed and drugged her more. And more. 

Lucy died in 1992. Too little has changed since then, as Ter Beek’s tragic story shows. What also hasn’t changed is the notion of suicide as some kind of a rational “choice,” which a well-meaning friend expressed to me after my sister’s death. As I said then and say for the bajillionth time now, suicide is never a choice; it’s an action taken by someone trapped in interminable darkness who can’t see any other escape. 

The word “choice” implies options. Something plural, not singular. Something a person selects from a list of other possibilities. But when a person takes their own life, they don’t envision options. They’re not even choosing between life and death, because life itself is unseeable and unknowable inside that pit of darkness. 

What they need is the smallest glimpse of light — a spark of something that suggests yes, there can be a tomorrow, there can be recovery, there can be life, if only one heartbeat at a time. And too often, that glimpse never enters the pit. They can’t see any exit aside from death, especially after years or even decades of treatment. 

Since the announcement, Ter Beek has suffered extreme blowback from around the world, with some folks even saying she’ll go to hell. I am not one of those people. Yes, I feel profound empathy and sadness for her loved ones, who will spend the rest of their lives grieving. But I also feel profound empathy and sadness for her, because she feels there’s no other way. Maybe she was never given any real alternatives to the drugs and ECT, and maybe she was never informed of their harms. My sister wasn’t. Too many aren’t. 

So no one should disparage Ter Beek or drag her over the coals. Let’s regard her only with compassion — with comprehension of all of her suffering, and all the many failed treatments that likely made that suffering worse. 

If we want to point fingers, let’s consider the system. And condemn that instead. 

—Amy Biancolli, Family Editor 

parents@madinamerica.com

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More from Mad in the Family

More Editor’s Corners

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Kasdan is a longtime business and technology writer who pivoted to memoir writing on a quest to tell her sister’s story, joining the Westport Writers’ Workshop. Her book, published in October by She Writes Press, is a moving and nuanced portrait filled with love and grief, candor, and complexity. 

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: Deborah Kasdan, thank you for speaking with me today.

Deborah Kasdan: I’m glad to be here, Amy.

Biancolli: This is obviously a big topic. It’s deeply personal. The book covers so much ground, so many years: your sister’s entire life, your relationship with her, the family dynamics. There’s so much in it, and she was an indelible person. I know we don’t have time to dig into every last piece of it. But for a start, if you could tell us who she was, what you loved about her, so that as we get into this conversation and dig a little deeper into all that happened, people will have a sense of Rachel and what she means to you, still.

Kasdan: Well, Rachel was my big sister, first and foremost, born three and a half years before I was. She was a leader to me. She was a free spirit that became increasingly clear as years went on. She led me places. She advised me on many things—what to read, what to wear, what teachers to take, and she was a buffer between our parents and me, because she was the first child and she pushed the limits. And when she fought with them and got concessions about what we could or couldn’t do, it took some of the heat off me, it gave me a little bit of space.

And as you said, she was musical. She was artistic, poetic. She was my role model for a long time.

Biancolli: She was an inspiration.

Kasdan: Yes. Especially with the writing.

Biancolli: You describe her youth, and you describe the time she spent in Israel, traveling, having adventures, working in a kibbutz. It was after she came back when she had her first psychotic break, right? She believed she was being followed by two men from New York City to San Francisco. So could you talk about that a little bit?

Kasdan: Well, that was the first time I saw anything that made me wonder whether she was okay. My parents had been on her case a long time for a few years since she got back, wanting her to settle down and have some direction and go to college. She didn’t want to go to college, she went to work. She was very impulsively dashing around the country. So she came back from San Francisco when I was still in high school. She sat down and told me that she was being followed by two men. 

Now she had come back from San Francisco because her boss had called my parents and told her something wasn’t right. But I still didn’t know what that was. I didn’t know what that meant.  As far as I was concerned: my parents, her bosses, [maybe] they didn’t like her lifestyle, maybe the way she dressed. You know, she was kind of a bohemian. So I didn’t know what that meant. But then when she told me personally that two men were following her, I could see it in her eyes that she was afraid. I knew something was wrong. And maybe my parents had reason to be worried, something which I had resisted believing.

Biancolli: You have this memory that you describe in the book [of you] as a family watching Khrushchev give a talk on television to the U.N. And your dad had been an activist, a leftist. He was very liberal, and apparently he was on the FBI’s radar, because in the middle of watching this, they literally showed up at your doorstep, right? I mean, what a story. How could that not have fed into what ultimately led to her first psychotic break? It’s almost logical.

Kasdan: So logical that when my daughter read that—I don’t think she remembered when I told her about it, but she read it—she said, “Well, maybe she was involved in political activities.” So I finally did write to the FBI, and they had no file on her. So she wasn’t being followed. 

But yeah, my dad and my mom, too, were involved in left-wing politics. And ACLU was considered a communist front, and they were active in that, and my father had actually joined the party when he was in college—when a lot of people did. They called themselves fellow travelers, which means they would help out.

When some communists had to go underground, I think they helped out. Gave them a place to stay. So, of course they were on the FBI list. And every time my dad took a new job, they showed up to let him know that they knew where he was, and please, would he name any names? And of course he wouldn’t. That’s basically what they wanted.

So yes, [the FBI showing up during the Khruschev talk] must have fed into it for her. I thought it was a big joke. It was just funny. Me and my younger brother kind of laughed it off. But she was older. She was already a teenager, and she was very well read, very aware of what was going on. And she must have felt the danger that was inherent in this. She took it seriously.

Biancolli: And of course, now we know so much. There’s so much research connecting trauma with psychotic breaks. She was diagnosed with schizophrenia at age 23, and she was ultimately hospitalized many times, right? She was in and out of the hospital.

Kasdan: Many, many times. Yes.

Biancolli: And how did you feel as her sister with all of this happening? When she was first hospitalized, and what were some of the changes that you might have seen affecting your sister after she was first put on drugs and committed?

Kasdan: Oh, she changed after she was medicated in St. Louis. She changed utterly, just totally. The active dynamic person. She just became flaccid, she started getting tardive dyskinesia, the neuromuscular side effects of the narcoleptics. She was still feisty. I mean, when she had her privileges, she wanted to do what she wanted to do. She had a boyfriend who was a former patient at the hospital. 

So she led this kind of life that I wasn’t part of, and she was in and out. She still had opportunities to do things but she lost all her vigor, you know—her eyes weren’t the same, and she gained a whole lot of weight from the medications, of course. She still had interest in drawing. She was still writing poetry, and some of the poems in the book [were written] during those first few years. So she maintained some of her interests. But she was more tractable. She wasn’t as oppositional as she used to be, at least not overtly, that I could see. So it was hard, you know.  And the situation at home became pretty chaotic, with my parents and her. Nobody ever agreed on anything. So I became kind of depressed myself. I didn’t know what was happening. It was very confusing.

Biancolli: Well, how can it not be? My late sister, Lucy, wasn’t diagnosed with schizophrenia, but she was diagnosed with a million other things, and she spent years being hospitalized. Even though there are obvious differences, I was just so struck by so many parallels, and one that I wanted to ask you about was this: how difficult it is to see the change in your sister. Lucy was my big sister. She died in ’92 by suicide. The transformation was so hard to watch, because she was an aspiring concert pianist. So when I grew up, she was my genius older sister. Then, as soon as she started being treated, and being hospitalized and drugged—around the same time, she stopped being able to play the piano because she couldn’t concentrate. And in the context of the time, I didn’t really know what was happening. “Oh, that’s her ‘mental illness.’” But, looking back, well, almost undoubtedly, that was the drugs she was on.

So not to go off on this little side conversation about my sister, but I was really, really, deeply moved, because I get it. You’re watching your older sister, who you grew up admiring, and oh, my gosh, she was just everything to me. And then it was like the mute button was put on her in a lot of ways, not so much on her personality, but what she was able to do. And it’s hard. It’s really hard to see that happen to somebody you love.

Kasdan: Yes, she was putting together a book of poems those first years, and I think the project fell apart. The poems were made, of course. I have them. But you know, the idea of publishing them–somebody asked me recently, did she ever publish? No, she didn’t. But she would have, I believe, just like your sister would have given concerts, you know?

Biancolli: Another question I have for you in that regard: I’ve never stopped asking what ifs—you know, what might have happened in an alternate timeline. Well, what if something had changed? If this had changed, if that had changed? Would she have gone on to a career as a pianist? And would your sister have gone on to have a significant career as a poet? What if? Do you ask yourself that?

Kasdan: I ask the what ifs more in terms of what if her early life had been different? I have these counterfactual scenarios that would have prevented that anger and that lack of trust that fed into whatever caused her psychosis and remained. If she had not been hospitalized, and given all those medications, and had a treatment that was non-judgmental and was supportive: I think she might have continued her poetry. She was also interested in art. I mean she did switch around her interests a lot.

But I think she would have found a community, some bohemian community, and lived some interesting life and been productive and creative. She loved the kibbutz work. She loved the outdoors. I could see her in California, maybe on a commune, maybe in an artist community. I think she would have had an interesting life. She did love travel. She was always traveling. And I think she would have continued to do that. 

Biancolli: Well, it’s one of the things you bring out. And one later aspect of her story that you bring out is that ultimately she did find community. She wound up going out to the Pacific Northwest the period before her death at 59. She connected with a case worker. But he was compassionate, and he also saw inside her, in a way—saw her in a way that so many other people in psychiatric treatment seemed not to—and he saw the creative spirit and encouraged her to get back to her poetry, right?

Kasdan: He did, he did. You know, she was so, so damaged by all her hospitalizations and medications and whatever, that the people in the hospital had a hard time believing her educational level and her past—and I see it in the notes I obtained from Oregon’s State Records, a big carton full of hospital records. And they just saw nothing of who she was. Because she didn’t talk to them. She did not bear fools lightly. You know, she just ignored them or blew them off. 

So Steve, this case worker who helped her, wanted to get her out of the back ward of Dammasch State Hospital in Oregon. And she was in a trial program with this agency in Eugene, and as part of this trial program, she had a janitorial assignment in the agency’s reception area. He went to check on her. And he found the poem she had written on the typewriter there. That was the poem “Water.” He said, “I’m not a poet, but this sure looks good,” and he gave it to a senior colleague who read it and said, “Yeah, this is good.” And Rachel was not performing her janitorial duties that brilliantly. You know, there were limited places for this work-residential program. So at a staff meeting, he had his senior colleague, who was also a poet, read this poem. And he said you could hear a pin drop, and they accepted her into the program. He had to do a few maneuvers to get her in. You know, the big issue is getting housing, and it took a few tries before she found a place that she could stay in. She was not an easy tenant. But he respected her so much.

They talked about poetry, and books, and ideas. I just recently saw again his case notes in the Oregon State Records, and he said [they] talked about Ann Sexton and Sylvia Plath, and “she really knows her stuff.” Nobody in all those years in the hospitals ever talked to her about anything literary or intellectual. And he understood how people could seem impaired, or maybe just different, and also be very talented. So he understood this type of neurodiversity—whatever you want to call it—and he was not put off by her lack of trust. She could be very suspicious of people, with good cause, considering what was done to her, but she wasn’t able to control it at all times. So that sometimes prevented her from getting help that she needed. But he was able to get around that. 

Steve’s a good guy. He’s a good guy. He gained her trust by seeing her as a person, understanding her interests and overlooking all the things that were obnoxious about her. You know, her behavior could be very off putting, and that didn’t bother him. He just accepted her.

Biancolli: That’s a beautiful story. And of course in the book, this comes near the end, after your descriptions of all that she’s been through—and not just her hospitalizations, but she spent time unhoused, living on the streets at different points. And you also describe the impact on your family. But coming around to this period at the end where she found community, she actually had her own little cabin, right?

Kasdan: It was a little house in this no man’s land between Eugene and Springfield. It wasn’t really zoned, and the agency had a few cabins in the woods. So she wasn’t totally alone, but she had her own space and her privacy, and it wasn’t far from the university—and she loved sitting in on classes. And she loved to walk. She loved nature. So her favorite thing was just to take walks. This little house was near the Willamette River, and she made her way to the banks of the river. She had to walk across property that was owned by an Oregon factory, and they took an interest in her. So she knew how to make friends too, and so she just loved to. She loved that area. That was perfect for her.

Biancolli: I love that little story—again, going back to the point that she was finally being seen in a way that she wasn’t as a psychiatric patient. We see this so often: as soon as somebody gets labeled, treated, drugged, hospitalized, the system and society at large stops seeing and stops listening. And I just thought that was such a beautiful example of what happens when we listen. Nowadays, we have things like Open Dialogue and the Hearing Voices movement. Do you wonder how those might have helped your sister?

Kasdan: Yes, she needed to be accepted, she needed a place where she wouldn’t be judged. Everybody was so quick to judge what she did. And my mother, I think that she was just so afraid. She wouldn’t even let friends go visit her. My mom wasn’t a mean person, but I think that was something coming from her own fear. So I think she would have been helped by peer specialists, which they didn’t have, then, that I know of. And I think it would have helped the family to be able to talk to peer specialists—if they had talked to people who had been through the system and survived it, so that we wouldn’t be so afraid of what was happening, and we wouldn’t distance ourselves so much. 

I think that the family is a wasted resource. You know, she had three siblings and two caring parents, and we all loved her, and wanted to help her, but we didn’t know how. And I think if somebody had sat with the family, and given us reasons to hope and to understand examples of people who get through this, examples of recovery and healing, then I think that we could have mobilized in a more constructive way. What we tried just didn’t work out because we weren’t educated ourselves. I mean, we were educated as much as anybody was for those times.

Biancolli: Families still struggle to be seen and heard, like when they’re advocating for someone they love, but then it was even harder—because there was less awareness. Is that something that we should still be working on? On engaging families more? I know there are programs that involve peer workers coming in and talking to families and things like that, and there are more groups that are forming among family members themselves.

Kasdan: Trust and being non-judgmental were the main things that my family could have learned. Rachel was very difficult. I mean, she was very oppositional with my parents, and maybe she couldn’t have lived with them, maybe she had to find an alternative placement. But certainly, when her siblings were adults, and wanted to help, I felt horrible that I didn’t feel I could have her near me. I had my own family, and I felt terribly guilty about that, which brings me to the issue that I kind of sense today—where parents want to be in charge of their adult children who are vulnerable, for all kinds of reasons, and the siblings may or may not disagree with them. So you may have different viewpoints within the family, and the parents may not always be able to help. That’s where you need community, outpatient [programs] or facilities that can help with housing, and job coaching, or education coaching if they’re in college still. And then siblings might be able to support those efforts. 

We were separated geographically through some odd circumstances, and maybe that hurt Rachel’s situation—because even if you’re not living with your family, even if you’re not really close to your family, you want to be a part of the network when there’s a wedding or a Bar Mitzvah or an engagement or something. You want to be part of that. So I think there’s a big loss when there’s this geographic separation that doesn’t have to be maintained. I think it’s good to try to keep a viable network going, and I think families need support to do that, and not just parents, siblings as well.

Biancolli: I understand guilt after losing a sibling, after losing anybody you love to any kind of difficult circumstances. I’ve felt that guilt after each of the suicide losses that have affected me, and you can say, rationally, “okay, I did my best.” It’s easy for someone like me to say to you, Deb, that you shouldn’t give yourself a hard time because you did your best. But I also understand where the guilt comes from. And I think that’s such a huge piece of the family’s, the loved ones’, experience when someone is in distress and you want to help, you want to stay connected with them. In an ideal world, you want to maybe wave the Magic Wand and make everything better, but you can’t. I totally get it. I feel it, I really feel it, because this is part of the family experience that I think people don’t always talk about or understand, and you’re very open about your feelings of guilt in the book.

Kasdan: I think that if there hadn’t been such stigma—and there’s still a lot of stigma—I wouldn’t have been so closed off about it. I didn’t talk about Rachel, at work or with my friends. I didn’t deny her existence, and I occasionally found opportunity to mention her. But you know, it wasn’t a day-to-day, week-to-week thing that I would talk about Rachel, and I think closing off that part of myself made the guilt worse. I think part of the guilt was not acknowledging her existence in the full sense. Again, I didn’t deny it, but I didn’t really make her a part of my life.

Biancolli: I get it. I understand. And again, I know your story’s different, her story is different. But I understand, and I’m also wondering about writing the book—because I’ve written a couple memoirs of grief. And I’ve always found that whenever I write personal works, addressing grief and loss, it’s a way for me to create a narrative and understand my loved ones better. And I wondered if you had the same experience with what you learned about Rachel. What came to the fore? Were there healing aspects for you in writing the book, and was that one reason why you wrote it?

Kasdan: Well, it certainly brought me closer to her, because I just immersed myself in her—particularly her letters. And [there were] letters I had never seen before to my parents. I learned that there was love between her and my mother, and so much of my guilt was bound up with my relationships with other members of the family. But when I was able to step back and see them having their relationship that I was in the middle of, that was very healing. The letters between her and my mother, reading the hospital records—as terrifying as you can imagine. 

Yet I saw a very strong and independent-minded person. The poems, through the years: they did get darker and darker as time went on. But that she never gave up her writing was very inspiring to me, even after all she had gone through. She sent me, once—she was maybe being transferred to another hospital—her journals for writing her stories. Because she trusted me to keep them, and I thought about that. I said, “We’re connected with the writing, that connects us somehow,” and that was very healing. And to be writing about her, it almost felt like I was writing with her, and that was healing. That brought back, you know, the older sister I admired.

Biancolli: And again, I completely understand, because I’ve had that experience as well.  I was actually going to ask you whether you felt like you were, in a way, conversing with your sister. Visiting with her. Because whenever I write or even talk, it’s like I’m learning about the people I love who aren’t here any longer. And in a weird way—and you tell me if this sounds at all familiar to you—I almost feel as though I’m still maintaining a relationship with Lucy. Like, every time I write about her, I’m having a conversation with her, I’m learning from her, I’m hearing her voice. This is, at least, my experience of grief, and I’ve never heard that talked about. Do you get what I’m saying?

Kasdan: Definitely, definitely. And when the publisher’s designer came up with the cover art, I said, what? It didn’t make any sense. But the more I sat with it, the more I understood it. They had asked for a picture of the two of us together. So I [had a photo] when we were little, 6 and 3, maybe, and she took this picture and the designer and put it behind the platen of the typewriter. So it’s coming out of typewriter. 

And yes, we’re writing together. And I’m writing about her, and I’m talking about her. And she gets to have her own say, because her letters and her poems are in the book. So, yes, I feel it was a joint effort. Then every time I talk about the book, I’m talking about her and repeating her name, Rachel Goodman. I got in touch with people who knew her who I didn’t know, and we talked about her. And then having the book is a reason to discuss her and share our memories.

Biancolli: I know Rachel. I know Rachel Goodman from reading the book, and that’s the other beauty.

Kasdan: Yes, because she was so marginalized. I just weep at the amount of marginalization she endured, being homeless, brought to the emergency room, arrested. And she was considered a street person, and to me—to have her name out there, to have other people know her—is just wonderful.

Biancolli: I also wanted to ask you about the push, now, in different parts of the country for forced treatment. Obviously in New York City, you’ve got Eric Adams pushing to have unhoused people hospitalized, and then you’ve got everything going on in California. How do you feel about that? Does that break your heart? Does that make you think of Rachel?

Kasdan: Yeah, one of the reasons we left her on the West Coast when she landed up there, I thought if she was near me—I live not too far from New York City—she would have made her way to New York City, and she would have been one of those homeless people in New York City, at least for a while, between stays with me or in respite places. 

I mean, the irony is they don’t even have places when they sweep them up and put them in the hospitals. Hospitals can’t keep them, so they just go back. It’s a fake solution, basically. And I hear that in California, the counties that are supposed to implement those care courts are pushing back because they don’t have the funding to do it. So it all just goes back to no funding. They’re not even a real solution. 

So it’s just political theater, if you ask me. That’s my opinion. It’s just political theater, and the real solutions, which are community-based outpatient treatment, community-based housing solutions, and peer counseling, coaching—that’s where the money should be going. So, yes, it breaks my heart when people just, you know, pass the unhoused person on the street and say that they’re a nuisance to their lifestyle. Their quality of life—that’s the term they use. They spoil the quality of life for their community. 

Well, every person deserves a quality of life—and when you hog all the resources, you’re depriving other people of a quality of life.

Biancolli: And when they walk past someone, they don’t even want to see someone on the street. They don’t want to hear them.

Kasdan: Right, and there’s a person there. There’s a person with a history. There’s a family that loves them that may not have been able to help them. But there’s a person with talent and hopes and dreams and disappointments.

Biancolli: So you included your sister’s own voice in the book, her letters and poems, for instance. How important was that to you, since she was someone whose voice wasn’t heard?

Kasdan: When I first started writing, I was so in my own head, trying to figure out what I felt and believed. I had read her poems, but people who saw the initial manuscripts wanted to see more Rachel. And I said, well, I have her letters. I’ve been reading them. So I took care to excerpt them, weave them into the story, and I realized how important it was. I didn’t start that way, but I developed it, people encouraged me, and I became more emboldened as I did it. Yes, her voice works. And then picking the poems out to include became very meaningful to me.

Biancolli: One of them, a really beautiful poem, closes the book and inspired the title, Roll Back the World. Could you read that for our listeners?

Kasdan: Yes, that’s the one that she wrote when she was supposed to be mopping the floor. So keep that in mind. I do like to imagine—if I can just preface this—that as she wrote this, she was thinking about her time in Israel, because she was near the Mediterranean. And I like to think of her on the shores of the Mediterranean Sea when she wrote this:

Biancolli: That’s beautiful. 

Our guest today was Deborah Kasdan, author of Roll Back the World, A Sister’s Memoir, recently published by She Writes Press. For more information, see www.deborahkasdan.com. Deborah, thank you again, so much. Thank you for reading that beautiful poem by your sister Rachel. Thank you for writing the book, and thank you for joining us here at Mad In America.

Kasdan: Well, thanks Amy, for having me. I really enjoyed speaking with you. It’s very meaningful.

Biancolli: To me as well.

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The post ‘It Was a Joint Effort’: Deborah Kasdan on Bringing Her Late Sister’s Story to Life appeared first on Mad In America.

At night, after getting home from dance sessions, she’d take a shower, lie in bed with her phone, and scroll, scroll, scroll.

“I would be scrolling for hours—like an hour, two hours, looking at what these other girls could do and their bodies, and comparing them to me. I can’t do that. I don’t look like that,” says the teenager, who’s now 18.

Over the phone, she comes across as smart, candid, articulate, and direct, her bright soprano digging hard and deep into every question asked. She does not hold back. She does not want to hold back. After all she’s been through, she wants people to hear and understand.

This is what social media does, she says. It draws people in. It hurts people. In the worst cases, it kills people. It killed one of her close friends from grade school, a boy who was bullied so horribly, so repeatedly, in person and online, that he took his own life. The final blow, she says, was a happy portrait of himself with his family that he had posted one day.

The bullies piled on. One told him to go kill himself.

He did.

She learned the news at school. “They had an announcement saying that they were extremely sorry, but one of our former classmates had passed away due to suicide,” she says. “And the people who made fun of him—the same people who had posted these things about him—they were posting about how sorry they were for him and his family, and how much they always loved him.”

“I took a step away from social media at that point,” she says.

The young dancer’s story—at her request and her father’s, she’ll remain anonymous—illustrates both the lure and harms of social media, which has been drawing more and more attention of late for its ubiquity, its addictiveness, its corporate habits, and its role in the youth mental health crisis.

Every other day, it seems, some new article appears on declines in child and adolescent wellbeing and spikes in suicide attempts and self-harm. Every other day comes a story or a study pointing to the negative influence of online habits. In a recent batch of articles, new research from China shows the negative impact of screen time on kindergartners, with non-educational content linked with worse mental-health problems, and new research from South Korea shows a link between suicide and excessive phone use in teenagers. There are stories about school efforts to silence public displays of grief, about the impact of online racism on Black teens, about a disproportionate rise in suicidal ideation among Black youth, about the persistent popularity of social media among youths despite the documented risks.

Potential positives alongside the negatives

In the midst of all this, the conversation surrounding social media and youth mental health is a whirlwind of data and competing theories.

Many voices, Surgeon General Vivek Murthy among them, have denounced its impact on child and teen mental health and pointed to it as a significant factor in the dramatic, continuing increases in depression and suicidality among adolescents.

As the executive summary from his recent advisory on the topic states:

“Those who spend more than 3 hours a day on social media face double the risk of poor mental health including experiencing symptoms of depression and anxiety. This is deeply concerning as a recent survey of teenagers showed that, on average, they spend 3.5 hours a day on social media.”

Other voices, trying to dial things down, have suggested the plunge in teen well-being predates the rise in social media and point to other potential causes. They also point to a discrepancy in the impact on teens: some respond better, some respond worse. Social platforms can—in certain contexts, for certain teenagers—play a positive role, at least sometimes, as exhibited in research suggesting that young people from marginalized backgrounds benefit socially and mentally from “critical media literacy” skills that allow them to build online social support while avoiding harmful content. Even Murthy’s advisory cites this difference in impact, saying, “Social media can provide benefits for some children, including by serving as a source of connection for youth who are often marginalized, such as the LGBTQ+ community and people with disabilities.”

Or, as Kaitlyn Tiffany wrote in a recent piece for The Atlantic:

“Compelling evidence suggests that social-media platforms are contributing to the crisis, but it’s also true that the horror stories and the headlines have gotten out in front of the science, which is not as settled as many would think. A decade of work and hundreds of studies have produced a mixture of results, in part because they’ve used a mixture of methods and in part because they’re trying to get at something elusive and complicated. Rather than coalescing into a unified message that social-media use is an awful, indisputably destructive force—tobacco with a “Like” button—the research instead has been building toward a more nuanced, and perhaps more intuitive, takeaway.

Social media’s effects seem to depend a lot on the person using it. It may play a different role for different demographics, and the role it plays may also change for people at different stages of life. It surely doesn’t affect everyone in the same way.”

And yet, for a significant slice of the teen population, the negatives can be overwhelming. Bullying is nothing new in the realm of pre-teen and teenage dynamics—except that these days, public shaming is 24/7 and often tragically unavoidable. With smartphones in so many children’s pockets, cyberbullying prevails around the clock. And the younger the child, the rougher the impact. Particularly for girls.

According to a new study from Sapien Labs, 74% of girls who acquired their first smartphone at age 6 scored as “distressed or struggling” range on its Mental Health Quotient:

“This decreased to 61% for those who acquired their first smartphone at age 10, and 52% for those who acquired their first smartphone at age 15. Altogether, even among those who acquired their first smartphone at age 18, 46% were still mentally distressed or struggling. This high percentage of distress compares to less than 14% of those age 45 and older who grew up and lived much of their younger adult life prior to Internet ubiquity.”

Specifically, it notes: “Problems with suicidal thoughts, feelings of aggression towards others, a sense of being detached from reality and hallucinations declined most steeply and significantly with older age of first smartphone ownership for females, and for males as well, but to a lesser degree.”

Reducing time in the real world, and empowering bullies

If indeed screentime is a significant factor in the youth mental health crisis, the question is: Why? How does it work? What does it do?

For starters: It reduces the amount of time young people spend in the real world, immersed in real social interactions. According to a recent survey of American adolescents, American teens reporting daily (or almost) in-person get-togethers plunged from 44 percent in 2010 to 32 percent in 2022. And as study after study shows, a deficit in face-to-face social interaction can have significant negative effects on their mental health.

Second: It disrupts sleep, with the hours on social media or video games at bedtime contributing to chronic deprivation in tweens and teens and prompting or worsening bouts of anxiety or depression.

Third: It feeds into the epidemic of self-diagnosis raging across the internet, particularly among teenage girls, and particularly on TikTok with its “sick-role subculture.”

Fourth: It empowers bullies, giving them a platform with wide reach and few controls. As described by the young dancer at the beginning of the story, engagement on social media encourages bullying, shaming, and comparisons with others—their bodies, their lives—in ways that are much harder to escape than in pre-Internet, pre-smartphone eras, back when abusive behaviors were mostly limited to in-person interactions. The ugly dynamics at play on social media were once limited to middle-school lunchrooms and bus rides home. They were escapable. Now, they’re everywhere.

Fifth: It’s potentially addictive. In two books by psychologist Nicholas Kardaras—Glow Kids and Digital Madness—the author explores this addicting nature of screentime, the research indicating its often devastating harms, and the cultural habits that promote and compound them. As he asserts in Glow Kids: “Video games for the alienated kid and social media for the cheerleader are both just as addicting as heroin is to a junkie. With every burst of virtual gunfire, every text and tweet, there is a release—a little squirt—of dopamine, just as surely as cocaine tickles our dopamine neurotransmitters.”

Kardaras quotes researchers who described such media as “electronic heroin”—and in subsequent interviews, he called it “digital heroin.” In Digital Madness, he addresses his own history of heroin addiction and recovery from a coma, and delves into the “social comparison effect” as particularly harmful. “The dynamic whereby comparing ourselves to a continuous stream of ‘my life is great’ content may make a person feel ‘hey, maybe my life isn’t so hot after all.’” He continues:

“That’s why so-called social influencers mainly influence people to feel bad about themselves—and it’s why Instagram drives up suicidal thoughts and self-loathing. Imagine a poor, lost teen without a strong sense of identity and lacking genuine social supports, staring at glam Kim Kardashian Instagram photos all day. Or someone, recently divorced and alone, staring at their Facebook newsfeed and seeing a neverending stream of one happy family vacation photo after another from all their friends. In both instances, we can see how the effect can exacerbate the feelings of emptiness and despair—of ‘my life is a failure.’”

Such constant comparisons, combined with isolation, sedentary lifestyles, and other habits, “are the ingredients of our modern madness, a madness fueled by social media that’s driving our record spike in adverse mental health outcomes.”

A virtual addiction to digital heroin

Kardaras isn’t alone in such objections. Just ask those who’ve made their careers helping children.

“Kids literally get addicted,” says a longtime speech pathologist who works with toddlers on the spectrum and chooses, like several others interviewed for this story, to remain anonymous.

One child she saw “watched TV all day. He liked the bright lights. He liked the changes he saw. He was very visually stimulated—and you know, when we tried to unaddict him, it was very, very hard.” Bit by bit, they turned the light of the screen and the sound down—“slowly, slowly.” But hitting a point where he wasn’t drinking in the stimulation, “He would freak out. And we weren’t about to take away his drug. I mean, that would have been horrible, you know. He was literally addicted.”

Yes, she says, some screen time involves educational tools—teaching shapes, language, and the like. But the hours spent immersed and seduced by flickering images doesn’t promote development in children, not the way real-world engagement does.

“What they need now is to apply, and explore, and to socialize.” But too many parents don’t comprehend the distracting power of screens to pull children away from what they need most. “Well-meaning and loving parents get their kids addicted. . . . They just don’t realize it. They just don’t realize it. They’re busy.”

Kids’ brains are plastic, she says. They can learn. But they need to play. They need social interaction. They need movement. They need time in nature, she adds, noting Richard Louv’s Last Child in The Woods: Saving Our Children from Nature-Deficit Disorder.

“I have one kid that is just so unregulated, and I say to the parents, ‘You gotta take him outside and run him around, you know?” As a speech pathologist, “I do a lot of movement. . . . Movement is often what motivates them to talk. They want to be picked up,” she says. They want to bolt, play, have fun. “They want you to chase them, you know?”

All of this is familiar to Cris Rowan, a pediatric occupational therapist based in British Columbia. She wrote her own book on the topic, Virtual Child: The Terrifying Truth about what Technology is Doing to Children, and offers webinars designed to promote healthier habits for adults and kids both.

The way she sees it, screen time—now at an average of eight hours a day for children—deprives them of four fundamental, formative experiences: movement; touch; social connection; and nature.

As Rowan explains in a phone interview: “As an occupational therapist, I look at the systems surrounding a child. I look at five areas. I look at physical, social, mental, emotional, and cognitive when I am trying to represent what kids need to grow and succeed.” For that to happen, they “have to be doing things in those five domains.”

Time spent on screens affects all five categories—and shrinks time spent on all four types of experiences, which lead to physical coordination, emotional regulation, literacy, and a host of other factors that are critical to learning and active, social, healthy development. Both touch and exposure to nature, for instance, help activate the parasympathetic nervous system that calms stress hormones. Results of too much screen time, she says, can include problems with physical coordination, speech, and cognition; sleep deprivation; social phobias; and a failure to attach (or a decline in attachment) with parents.

In a follow-up email, she emphasizes the “brain-pruning process that happens with excessive screen time.” The brain, she says, “is like a muscle, use it or you lose it. Mindless media content, found in video games, social media, and pornography, doesn’t require frontal lobe function. Consequently, we are seeing atrophy in the frontal lobes” of children spending hours a day “on mindless content.”

And one last thought, she says: Look at the recent research demonstrating a higher risk of dementia, Parkinson’s disease, and depression for adults who use computers extensively or watch more TV. “This has immense significance when we think of children’s developing brains,” Rowan observes. If older adults can get dementia from too much screen time, “can you imagine what is happening to children?”

Adults are addicted, too

Decades ago, Rowan’s own son became addicted to early video games (Pong, Tetris) on a Commodore 64, spending more and more time on them and becoming less and less social. “I felt like I was losing my son. ‘Where’s Matt? Where’d Matt go? Where’s that nice little boy that would talk to me?’” Eventually she cracked down, tossed the box, made him do chores, and encouraged him to invite all of his friends over to the house. He got better.

But that was around 30 years ago. These days, screens are more ubiquitous, and the temptations are worse.

One problem is adults themselves are addicted to screens; another problem is the automatic reliance on phones to help sooth younger and younger children. Children as young as “six months old have cell phones in their hands. So we’re teaching the child to regulate their energy state with the device, not with the parent.” The result, she says, is “virtual autism,” a term coined by Romanian psychologist Marius Zamfir to describe the phenomenon of children diagnosed on the spectrum who spend hours a day on screens.

Rowan points to research conducted by Andrew Doan for the U.S. military that explores addictive online gaming, internet pornography use, and the physical and mental harms induced by both. In one article from 2015, he examined three cases of U.S. Marines who reported insomnia after playing video games from 30 to 60 hours per week, and exhibited “symptoms of blunted affect, low mood, poor concentration, inability to focus, irritability, and drowsiness.”

In another article from the same year, zeroing in on children and adolescents, he and his co-authors reviewed the scantly researched “Internet Gaming Disorder” (a term described by the American Psychiatric Association as a “potential diagnosis”) and make a range of recommendations for clinicians and parents, from ensuring children “have ample media-free time and access to non-gaming creative play opportunities” to “agreeing to a set duration before starting play and providing a visible timer for both parent and child to monitor use.”

Further: “At all ages, it is recommended that media not be located in the bedroom and that video game play not begin within half an hour before sleep time.” It also cites a study showing that parental monitoring and limits on social media use can have a protective effect in a range of contexts.

But by and large, despite all of this, Rowan says people remain grievously unaware. She’s working hard to raise awareness, arguing for the removal of cell phones from schools—which is getting some traction. She’s also been pushing the “weight of evidence” showing harms, as she outlined in an article listing 66 specific negative effects on children. And a brochure she wrote, “Social Media is NOT Social and NOT Safe,” has been widely distributed and reportedly reached President Biden. So, word is getting out there, she says.

All the same, there’s a reluctance to acknowledge such evidence. People make excuses, saying screens make things easier, or say it’s the parents who make choices for their kids.

“Why is nobody waking up to this? Well, because they’re addicted themselves,” Rowan says. Using Kardaras’ term, she describes screens as “a dangerous substance. They’re an addictive substance. You’ve heard the term ‘digital heroin’: It’s very harmful for children, but it’s also harmful for adults as well.”

And yet they use it. This is the paradoxical relationship many youths—for that matter, many people—have with social media. They dislike its toxic qualities, they see the harm it does to others, they know firsthand the damage it can wreak.

In short, they hate it. But they use it. Parents see the effects on their children. Young people see it in themselves.

“Social media sucks!”

A young woman says this. She’s light-haired, sharp-eyed, and standing with a clutch of three friends in their early 20s at the Sound Mind Festival in Brooklyn earlier this year. “Social media,” she says, “is the worst thing ever.”

“Strong agree!” says a second young woman.

“I am on Instagram and TikTok, but it’s evil. Evil,” says the first young woman. “For the brain. It’s a brain-killer. . . . It’s just, like, so toxic.”

There’s an edge to her voice as she says this, her dark observation tinged with self-awareness.

A third young woman, chiming in, says social media “promises connection—but it kind of, maybe, fails in that way. I think it promises that, but often makes someone feel more isolated.”

No one in the group wants to share their names or any other information. Nope. Too risky to put their real lives out there. But they are all on social media, and they all perceive—quite clearly, described with that same grim tinge to their voices—its risks and harms. They know because they’re on it, and they’re not getting off anytime soon. The first young woman would be an influencer, if she could—just for the income. “It seems like the easiest gig,” she says, putting it bluntly.

But at what cost, she wonders. Look at all the girls trying to be the next Alix Earle, TikTok’s ubiquitous “It Girl.” “She’s rolling in the dough—and all these girls, they’re trying to emulate an unattainable standard,” she says. “Effed. Up.”

Still, she’s hooked. She’s not about to get off TikTok or Instagram anytime soon.

“I’m addicted to the drug,” she says, that sardonic edge once again audible, and everyone laughs. Including her.

Grieving parents have their say

According to critics, including former Facebook employee Frances Haugen, who testified before Congress in 2021, social media giants like Meta (which owns Instagram and Facebook) knew about social media’s potential toxicity from the get-go. They understood the addictive qualities, the harms for teens and younger kids, the propensity for and encouragement of bullying, without properly instituting safeguards—all accusations made in lawsuits filed across the country by school districts and states, including 41 filed against Meta by attorneys general. The first was filed by Seattle Public Schools in January of 2023. As it stated in its announcement:

“By marketing to and targeting young people, the companies who own these social media platforms have created digital environments that can negatively affect the mental and emotional health of our students.

We believe that the companies should be held responsible for their actions and the harm they are causing by contributing to the increasing costs that school districts now bear in response to the increasing mental and emotional health needs of students.”

Along with the rash of lawsuits, certain states are also pushing forward with safeguards and even bans on social media use for children and teens: recently, Florida lawmakers advanced a bill that would prohibit youths younger than 16 from using such platforms and, at the same time, require all users to verify their age. Echoing Kardaras’ coinage with an even deadlier analogy, Republican state legislator and bill co-sponsor Fiona McFarland described the dopamine triggered by social media (in remarks quoted by Politico) as “so addictive, it’s like a digital fentanyl. And even the most plugged-in parent or attuned teen has a hard time shutting the door against these addictive features.”

In March of last year, Utah became the first state to institute such a ban, requiring parental consent restricting minors from social media platforms like TikTok and Instagram between the hours of 10:30 p.m. and 6:30 a.m. Again, age verification is now required before anyone in the state can engage on social media. Additional states are also pressing for age verification and parental involvement, although such state efforts are inspiring blowback from tech companies; Meta has already issued a loud objection to the Florida measure, and similar bans and safeguards have been held up by tech-industry measures in Ohio, Arkansas, and California as well as Utah.

Meanwhile, at the federal level, a bill dubbed the Kids Online Safety Act (KOSA) calls for safeguards and “reasonable measures in the design and operation of products or services used by minors to prevent and mitigate certain harms that may arise from that use (e.g., sexual exploitation and online bullying).”

Co-sponsored by senators Marsha Blackburn and Richard Blumenthal and discussed in a Senate Judiciary Committee hearing in late January, the bill calls for social media platforms to allow for the restricting of access to minors’ personal data and provide “parents or guardians with tools to supervise minors’ use of a platform.” Other strictures outlined in the bill include refraining from “facilitating advertising of age-restricted products or services (e.g., tobacco and gambling) to minors.”

Shortly before the hearing, the committee released internal 2021 emails from Meta documenting the rejection by CEO Mark Zuckerberg and other executives of efforts to make the platforms safer for kids. At the three-and-a-half hour hearing itself, senators heatedly criticized him and other tech execs from TikTok, X (formerly Twitter), Snap, and Discord before a crowd that included bereaved individuals holding pictures of their children lost to social media harms.

At one point, Zuckerberg stood and turned toward the gathering of observers behind him. He apologized to the grieving parents among them, saying: “I’m sorry for everything you’ve all gone through,” and adding, “It’s terrible. No one should have to go through the things that your families have suffered.”

Many such parents belong to groups advocating for KOSA, including Parents for Safe Online Spaces (ParentsSOS), an educational initiative created by 20 families who lost children to some form of online harm. Among them are those who died by suicide after being cyberbullied or “sextorted”—i.e., threatened with the posting of explicit images. The group’s website features a page filled with children’s and teens’ smiling photos and tragic stories, which include quotations from their devastated parents.

“Social media companies have run amok, leaving a trail of death through an entire generation of Americans,” says one mom, Amy Neville, whose son Alexander overdosed after someone on Snapchat sold him oxycontin laced with enough fentanyl to kill four adults.

Says another, Christine McComas, whose daughter took her own life after being cyberbullied and threatened on Twitter, then further bullied by kids in school: “Grace should still be here, and I believe she would be had she not been abused over social media or if there had been some way to make it stop.”

A catalyst that increases the effects of depression

For the young dancer who lost her childhood friend to bullying and suicide, none of this is an abstract topic of debate. All of this is real, and it’s hard. So are her own struggles to get out of bed, some days. “I’m very open to talking about this, because there needs to be more awareness,” she says.

For years she’s grappled with depression, anxiety, a bipolar diagnosis, suicidality, two occasions when she came close to an attempt, and five hospitalizations. Through all of that, social media has only exacerbated her self-doubts. Sometimes it’s hard to get out of bed and face anyone in the real world, she says. And when she does, it can derail her.

The teenager’s father, who also opts for anonymity—“I’m just a father of a child with depression”—is profoundly concerned about his daughter.

“You know, as the kids get to 8, 9 years old, they all want smartphones. And the text messages—to me, that should have been an early warning sign that maybe that stuff is too much for a child of her age. But I relented. And her mother relented. And we soldiered on. But she gets into her fifth, sixth, seventh grades, getting into junior high and the social media part of it”—combined with the stressors and sense of competition associated with dancing, it all got worse. Starting ballet with a school that emphasized “stick-figure type” bodies exacerbated everything.

“When the girls got into junior high, the social media part of it and all of that started to come around, it was bad. I mean, really bad. You know, the things these girls would say,” says the father. “And you know, when I was younger, somebody would pass a note around.” It was horrible, but limited. Nowadays, “Something like this happens, the whole school knows.”

Regarding social media, the dad says, “I’m not saying it causes depression. I’m only saying it amplifies it. It’s a catalyst. You know, just like you learned in chemistry class: A catalyst will increase the effect of things.”

“There’s so much screen time,” he adds. “There’s Snapchat, and TikTok, and Instagram, and shit, whatever else there is. . . . The lines between the real world and the cyberworld are blurred.” Sometimes, he says, she’s up in her bedroom for hours. And if he takes the phone away? “It’s world war.”

From his daughter’s point of view, as much as she dislikes social media, she can’t let go. That break she took following her friend’s suicide didn’t last long. She’s still on it, still looking at other girls’ bodies, whether they’re in ballet or not. Still feeling less-than.

“It has not changed,” she says. “There’s still a lot of judgment every time I look in the mirror.”

“He wanted to die”

There, again, is the hard truth—and the conundrum. Kids, teens, their parents, others: everyone understands the dangers of social media, seeing its impact on themselves and their loved ones. Ideally, those most affected can just shut down their devices, swearing off screen time and replacing it with real-world engagement.

But the reality is different. Consider the case of another child, a Northern California boy who started gaming around age 5. By age 10, in his last year in elementary school, he was having “major breakdowns.” Around age 11, obsessed with the video game Super Smash Bros., he made it to one of the highest levels before being defeated. “He cried, cried, cried. And then he was saying he was a failure, he no longer wanted to live any more, he wanted to die — for five and a half hours, saying things like that. . . . It was very, very scary.”

That’s his mom is on the phone. She agreed to speak after responding to a query on Facebook, and she has a lot to say—about her son’s struggles, the allure of gaming, the difficulties in their family after his breakdown. Her husband had grappled with depression himself. “My husband was like that, and now my son was like that,” she says.

Her son is 19 now. All those years ago, when he first fell apart, she threw away the video game, “and he cried and cried.” In the next couple of years, between withdrawal from the game and school stress, he continued to struggle—suffering panic attacks and suicidal thoughts. A year or two after the Super Smash Bros. meltdown, says the mom, “My son’s middle school called the mobile unit because my son said that he wanted to kill himself at the school. So they had two people with the mobile unit asking him, ‘Do you have a plan? Do you have a weapon?’ Fortunately, my son said ‘no,’ otherwise he would have been taken away.”

In his last year of middle school, he started inching back to normal as his mom adopted alternative parental practices. He’s in a better place now. A freshman at a university close to home, he’s more mature. Less glued to the screen. But he’s still gaming, she says. A few years ago, after discussing with her husband and negotiating limits with their son, they gave him another copy of Super Smash Bros. for his birthday. He only plays an hour a day, and that’s it.

There’s no way out of it, she says. Video games are “highly addictive.” That’s how they’re designed. “I’m still worried, because I have no idea what he and his friends—what kind of video games they play. . . . If something’s wrong, I’m going to ask questions and all that, but he’s older. He knows what is right, and what is not right, and everything is fine for now.”

Safe spaces on the one hand, cyberbullying on the other

In short, there’s no easy cure. Eliminating all screen time is virtually impossible; a more harm-reduction approach scaling back the number of hours can help, but even that isn’t exactly simple in an age when not just socializing but many aspects of education and employment occur in virtual spaces, especially since the pandemic. This very article, after all, was written on a Chromebook built to open windows in a zillion directions—to be published on a website built for readers in the virtual realm. As the California mom says, she used Mad in America to search for alternative resources and approaches in helping her son.

So screen time isn’t always evil. The Internet has the potential for good, making knowledge and history and insights and art and music and science available to anyone with access to the web. In many cases it can also build community, connecting those across the world in meaningful ways—something else that came to the fore during the pandemic.

As a school counselor on a Reddit board articulated in response to a query, “It really is a balancing act in terms of social media and mental health right? On one hand it can absolutely ruin students and their whole week. Yet, on the other hand, it can provide safe spaces and amazing representation for them. I have seen many students leave the high school I am at simply because of cyberbullying. Cyberbullying gets to a point where they mentally cannot take it.”

At the same time, “This is how students make connections with other peers just like them. A lot of my students find some social media to be safe spaces to discuss issues of mental health. . . . After COVID it became extremely difficult for students to reach out to peers in person because it was not a normalized experience for them.”

Looking ahead, the young dancer’s dad is worried but hopeful. “Whatever she does, she’s going to set the world on fire.” He’s proud of her. He believes in her. “She’s pushing through this, and she’s still fighting. I tell her, ‘You come from a long line of hard-headed people, and you keep on going.’” In an email following their initial interviews, dad offers this update: She’s started teaching ballet to kids aged 4-12, he says. “She is extremely talented. And thrilled to share her love of dance.”

On the phone from Texas that day, she answers the bluntest of questions with that same bright voice, that same, well-spoken candor. “Mostly I am in a better place, but it’s still a struggle—because each time I get in a good place, I don’t see myself staying there for a while,” she says. “So it’s a constant fear of ‘Something’s gonna happen, and things are gonna get back to the way they were.’”

When it comes to social media, should there be age limits? Should there be controls and restrictions? The dancer thinks so.

“Honestly,” she says, “for the young who are growing up, not even 10 years old, on social media and then looking at these girls”—comparing their bodies, feeling less-than—“is heartbreaking to me. So I really do feel like there should be some kind of age restriction, because I was one of those girls. And it’s taken me six years to even come to the realization that none of it is real.”

Beyond that: Across the board, there needs to be a careful and consistent monitoring of content that gets posted. That, she says, is critical. From her perspective, potentially life-saving. It might have saved her childhood friend.

“Social media should really keep in touch with what people are posting and saying. Because two or three days before someone who I’ve grown up with passed away, people were posting these things about him, telling him to go kill himself,” she says.

“And he did.”

***

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The post “A Dangerous Substance”: The Impact of Social Media on Youth Mental Health appeared first on Mad In America.

She’s also the author of several books, including Be Careful Who You Love: Inside the Michael Jackson Case, which she wrote after years of groundbreaking reporting on the topic; and her most recent, We’re Here to Help: When Guardianship Goes Wrong, just published by Brandeis University Press.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: Diane Dimond, welcome. Thank you for joining us today.

Diane Dimond: Thank you for having me, Amy. I appreciate your time.

Biancolli: Your book has so many stories, absolute horror stories—one after another, the stories of human anguish. But before we delve deeply into that, if you could, for our listeners who aren’t familiar with it: What is guardianship? In some states it’s called conservatorship.

Dimond: Well, that’s really where you have to start, because it’s such a secretive court system that most of America doesn’t know what the heck it is. Guardianship is a legalized system whereby states help with their citizens who need help, those who need protection because of various maladies, disabilities, physical or mental. They’re elderly, they have no family to take care of them, and they’re having memory issues. It’s a court system that we really need in this country to help the citizens who cannot help themselves.

After eight years of investigating cases and writing about them in my syndicated column and magazine long-form articles, I discovered that the system has been infiltrated by predators, financial predators who have simply, quite simply, bastardized the entire system. It’s not there—in many instances—to protect people. It’s there ready, willing and able to victimize people, and that’s what caught my attention. Thank you for saying there’s so many stories in this book, because I wanted to show the various ways that guardianship has morphed into this industry. Really, in my mind I like to call it a racket. It’s almost like organized crime in some instances.

Biancolli: That really comes through in your book—the abuse, the fact that this is state-sanctioned, literally, and state run. And it’s all behind closed doors. Most people don’t know what’s going on. There’s the level of horror in terms of what people have to go through, and then that horror seems even more extreme because it’s done in secret.

Dimond: Right, and it’s allowed because a judge has decreed that someone is “incapacitated.” Let me just quickly tell you how it all started. Anyone, and I mean anyone, from your landlord, to your next door neighbor, to your angry business partner, to your former lover can go to a lawyer and say, “Hey, I want some of that person’s money or property, what can I do?”

The lawyer will inevitably say, “Oh, guardianship. This is a panacea. Guardianship.” It might even be a family member, an adult child of an elderly person, for example, who can’t get along with their brothers and sisters about what to do with mom or dad. The lawyer will say, well, let’s write up a petition to the court and I’ll just give it to the judge and he or she will rubber stamp it. That’s literally what happens.

The judges that hear these cases, they don’t have time to vet what’s in this petition, and many times what’s in these petitions are just downright lies. Having gotten a petition from an officer of the court, a familiar lawyer in front of them, the judge says, okay, guardianship. It’s now in effect. Once someone is in the guardianship system, even if it’s a temporary guardianship, it’s almost impossible to get out of guardianship.

Amy Biancolli: That’s the other thing that I think most people are unaware of. The idealized version of guardianship is to help someone who is in fact either temporarily or permanently incapacitated by something, whether it’s brain trauma, perhaps it’s some type of disability, perhaps it’s Alzheimer’s.

Dimond: Perhaps they just had a stroke, and they’re going to recover.

Biancolli: They’re going to recover and usually, or frequently, it’s a loving family member who steps in and takes care, and is in charge of their finances. And you do, early on, describe some of those loving family members who actually perform their jobs in a caring and responsible fashion. But the book is looking at the flip side of that, the people who aren’t caring—the professional guardians primarily, but also some family members who abuse this profound power to sap resources and essentially take over someone’s life and finances. How common is this?

Dimond: Amy, I wish I could answer that definitively. Let me throw out some figures for you. First of all, nobody keeps track of guardianships in the United States. Nobody. There is no entity that says, okay there are 4,000 in Arizona and there are 11,000 in Illinois. Nobody knows. Then, how often does an abusive guardianship, a financially devastating guardianship, happen? I don’t know. But I’ll tell you: Over eight years I collected so many, I could have written a book that was twice as long as this book. I feel guilty that there were many cases I didn’t even mention in the book.

But here are some stats for you. Every year in this country, state courts hear guardianship cases. The targeted person is declared an incapacitated ward of the court. They are stripped of their civil rights. In most states, the vast majority of states, they can’t even hire a lawyer to defend themselves because they’re incapacitated. These state courts then confiscate the money, property, investments of all the wards and put it in the name of the guardian.

Every year in this country, state courts confiscate $50 billion worth of estates. So is it any wonder that financial predators have thought, “Hey, I got to get in on this, this is great”? Because only three states actually require a guardian to be licensed—California, Alaska, and Nevada. Many of them don’t even require them to get any sort of certification. It’s just a playground for predators. That is what it’s become.

Guardianships last an average of six years. If it’s $50 billion every year that the state courts are confiscating, that’s a pot of money of $300 billion just sitting there. Now, as you say, there are some great guardians, there are some great conservators and lawyers working in this field, and some of the guardianships work out just fine, especially if a family member is appointed as the guardian. But more and more, I discovered when a case comes before a judge, a judge decides, “Well, if it’s in court the family must be dysfunctional, so I’m not going to appoint you, brother Joe, as the guardian. I’m going to appoint a for-profit professional guardian.” They can charge you up to 600 bucks an hour, and hire any amount of other helpers to come on to service the ward. You can see how an estate gets drained pretty quickly.

Biancolli: As you point out, that $600 an hour can be applied to something like answering emails, something really mundane and small. I would at some point like to hear you describe a case, a specific case. One that really popped out to me is the story of Carl, the young man with disabilities. There are so many others that just broke my heart. But just to emphasize before you get into that: when someone becomes a ward of the state, they essentially lose their right to vote, they lose their right to spend their own money. They lose their right—as many of us learned from the Free Britney Movement and her whole guardianship struggle—to get married, lose the right to make all these basic human decisions, because they all have to be made by the guardian or the conservator. Someone who’s a ward is stripped of their civil rights, their basic human rights.

Again, there’s just so many stories. But is there one that to you typifies what happens, or illustrates it in a way that people will just hear and connect?

Dimond: You’re asking me to choose my children, here.

Biancolli: I realize. I mentioned Carl, this young man with developmental disabilities who was essentially informally adopted by a really loving family, and he wound up with this outside guardian. It was just an unbelievable nightmare. Here, he had this entire loving family advocating for him. But as you described, whoever is trying to become somebody’s guardian for the right reasons, they wind up being vilified by the court—and so the judge assigned somebody else. 

Dimond: Right. Carl DeBrodie was born to an addicted mother who neglected him, at the very least. The school bus driver, a wonderful woman, sort of adopted him. He was profoundly disabled, both physically and intellectually. She and her husband took in Carl. They just loved Carl, and Carl came to live with them. His mom didn’t really care that that happened, but they loved him so much. The whole big family did. But somewhere along the line, they thought, well, we should get this legalized.

They went to court to become his guardians. The judge said no. He assigned an outside guardian. That guardian—a stranger, complete stranger—had no idea what the loving couple was about or Carl’s needs, wants, or woes. They took him out of that home and put him in a group home. To make a long story short, that group home was run by a couple of criminals. I can say that because they are in prison. They made a slave out of Carl. They would take him home to their house, make him sleep in a damp basement, do the chores. Then they brought another person home from the group home, another disabled man, and had them fight in the basement for their own amusement.

In the end, Carl was killed. He was murdered, frankly. They stuffed him into a can of cement and put him in a storage locker only to be found months and months and months later. Nobody really knows the date of death of Carl DeBrodie. That’s one case.

There’s another case in Staten Island, New York. A young man, damaged at birth. He was deprived of oxygen and he developed a mild case of cerebral palsy. He walked a little differently, and he spoke a little differently, and his parents won about two million dollars in a malpractice suit from the hospital. As an infant, the court named a guardian for him. It’s the Shirley Temple Law that you don’t want the parents to spend all the money, so the money is protected till he’s 18 years old. His name is Michael Liguori.

At 18, Michael now wants his money. He’s graduated from high school with good grades. He wants to go to college. He has a problem with his hand and he wants to get surgery. The guardian says, no, no, no, no. Goes back to the judge and says, your honor, look at him. He’s intellectually disabled. Look at it. He can’t even walk right. The judge allowed that guardianship to go on for six more years. Six more years of the guardian and the people the guardian hired taking chunks of Michael Laguori’s money.

Michael called me last Christmas and said, “Diane, it’s over. I’m finally free.” I said, “What happened?” He said, “I didn’t want to—they hung on for a long time—but the guardian was insisting that I pay him $58,000 more, so I went ahead and paid him. And now I’m free.” I spoke to him about a week ago and I said, “Michael, do you know how much money is left?” He said, “No, I really don’t.” Because the guardian who was supposed to file this annual audit saying where all of Michael’s money has gone, he never filed it. He never filed an audit with the court, which is mandated by law. 

What happened to that guardian? Nothing.

This is the problem, Amy. I find these unscrupulous guardians all over the place, and when they get caught, mostly they get a slap on the wrist. Some of them now are actually being convicted, which is heartening. But it just breaks your heart. All of these stories, I can go on and on. 

Biancolli: I know you could go on and on, because there are so many stories like that in the book. Each time I read one, well, why didn’t law enforcement do something about this? I’m not a lawyer, I’m not a scholar when it comes to these things, but good lord, it’s criminal. On a human level, it’s just so deeply wrong. It’s appalling that there are so few cases where someone like Michael has some kind of a happy ending, even though he had to pay for it. That’s just astonishing. But to him it’s a victory. To him it’s a victory because it’s over.

Dimond: Now he finally can make his own decisions. Like you say, a ward cannot vote. They can’t decide where they live. They can’t write a check. They can’t have a baby. They can’t get married. They can’t write a contract. People on death row have more rights than a ward of the court. It’s stunning to me how powerful guardians are.

If you go to court and you think you’re going to be the guardian of your elderly mother, and the court appoints an outside professional guardian—and you don’t like what that guardian’s doing to your parent, and you complain to the court? That guardian can ban you from seeing your loved one. Permanently ban you. They can go back to court and they can say, “Your Honor, all of the liquid money is gone. I’ve gone through the checking account money and the savings account money. So now I need to sell the ward’s house and everything in it so that I have enough money to take care of them for the rest of their life.”

No matter that there is a last will and testament, a power of attorney, an estate plan, a trust, an irrevocable trust—in effect, judges nationwide nullify those legal documents and say, “Okay, go ahead, sell the house.” Now, that house maybe was bequeathed to the adult daughter or the adult son—or the heirlooms inside it, worth a lot of money. Suddenly they sort of disappear in the sale, and nobody knows where those things went. This is how powerful guardians are.

Some of them, they’re financial predators, but some of them are also just control freaks. They just get off on the control of it. I’ll give you a quick example. In Las Vegas, Nevada, there was a guardian named April Parks, and she was convicted. She’s doing 16 to 40 years in prison for stealing from her wards in Nevada. After she went to prison, her storage locker came up for auction. The man who bought it opened the door thinking, hey, what kind of treasure will I find here? What he found instead were the cremains—the cemetery urns—of 27 of April Parks’s wards. But in some instances, she hadn’t even told the family that the person had died. She made no attempt to get the cremains in a respectful manner to the family. She just shoved them in a storage locker and closed the door. You know, why? Why did she do that? Because she could. Nobody stopped her. The judge intervened.

I keep asking myself as I recall all these stories, where was the judge in all this? Why doesn’t the judge listen to the family? Well, because in the very beginning, the family was declared to be dysfunctional or greedy—after the inheritance before the person even dies—and so in the eyes of these judges, the families are tainted from the beginning. There’s no way they can redeem themselves. These are called equity courts. This isn’t like a criminal court or a civil court. In equity courts, there’s no due process guaranteed. There are hearings but there’s no trial. At the hearings the judge will mostly just listen to the guardian’s medical person who says, “Oh yeah, yeah, the person’s incapacitated.”

They’ll listen to the court visitor, the same one who always works with the guardian. “Oh, yes, I went to the home and it was a mess and this person needs protection.” It’s the same testimony in all these cases—and all these people work together to enslave people, frankly. There are processes that are far less restrictive than strict guardianship that judges could consider, but they don’t because it’s just easier to say, “Oh, petition for guardianship? Okay, guardianship’s on.”

Biancolli: Here at Mad In America, the readers and listeners are accustomed to stories of people who aren’t heard for whatever reason, because they’ve been slapped with a label. You give some examples in your book—for instance, a young woman who’d been diagnosed with depression, borderline, ADHD, and she was guardianized. She was making an argument for freedom from guardianship because she enrolled in college and she has a decent GPA. She’s obviously functioning. But because she’s been labeled—she has been deemed by somebody in the courts as incapacitated, however they might define it—she’s stuck. 

Once we label someone as somehow problematic, diagnosed, whatever it is, then we stop listening to them and we stop taking them seriously—and we start stripping their human rights.

Dimond: Now, think about what you just said. Is that the society we want to be? Is that what we want to do to people who have temporary issues? Mental or physical issues? We take them and we warehouse them away somewhere with a minder that can keep them away from everyone else—and oftentimes, I discovered, over-medicate them to ensure compliance. Is that the country we want to be in? 

Let me quickly tell you about a woman down south: 38 years old, single woman, successful, bought herself a condo. She had a car, she had money. You see, guardianship abuse happens with people with money. Keep that in mind.

While she was in a coma she was guardianized, and when she woke up she found herself in a group home, where she recovered. But she’s in guardianship. She’s “labeled,” as you say, incapacitated, and she couldn’t convince the judge, “Hey, I’m okay now.” That group home owner put her to work. She became the housekeeper, the grocery shopper. She was on the computer keeping the dosage of medications going to all the other residents. She really became enslaved. It took her years to get out of that guardianship because the judge just wouldn’t hear her, couldn’t imagine that somebody could get better from a traumatic brain injury. Give me a break. What century are we living in?

Biancolli: Yet here she was, doing all this work. I’m reminded of the story of Britney Spears, who was locked into this guardianship while she was raking in millions. How incapacitated was she? Of course in her case, I think she was stuck in guardianship for 14 years before she finally got free of it. For a lot of people, that was the a-ha moment when they understood or saw, for the first time, an example of the problems with guardianship. You do talk about her quite a bit at the beginning as an embodiment in pop culture of what’s wrong with it.

Dimond: I went back and really did some investigative work on that, and I truly believe that her guardianship—conservatorship, they call it in California—was established illegally. The judge in the case pulled some strings and appointed her favorite guardian, Sam Ingham, to be Britney’s co-guardian with her father. Sam Ingham made $10,000 a week for almost 14 years off Britney Spears, while she’s dancing and singing in Las Vegas and being a judge on the TV talent show and, as you say, raking in millions of dollars. There’s a California law, I discovered, that anyone who is a ward of the court who makes money should be given that money. But she never got it. I mean, she had a little allowance, but yes, that whole case really woke up America. But still, because it’s such a secretive system, the courtroom doors are closed, the case files are often sealed, there’s frequent gag orders issued. 

It’s all under the guise of HIPAA protection. There’s this federal law that protects people’s medical information, and so that’s a really convenient cloak used to keep everything secret, to keep the rest of us, really, in the dark. That’s why I wrote this book, because I got those case files and I talked to people who didn’t care about the gag order. They just wanted to tell their story so badly. And it was a lot of work, but it was a real passion project for me.

Biancolli: How many years did you spend researching this book?

Dimond: Well, since 2015, so about eight years. I first heard of the case in my home state where I grew up, New Mexico, but I couldn’t report on it because I couldn’t get the court documents. A dear friend’s father had been guardianized, and I just had to tell her, “I’m sorry, I believe what you’re saying, but I can’t confirm it. As a journalist, I have to have documents or other people confirming what you’re saying.” And I couldn’t crack it. 

Then a few months later, coincidentally, a private investigator I work with told me about a case in Pennsylvania. [The cases in] New Mexico and Pennsylvania were both elderly people, both held under guardianships that they did not want, that siphoned off their multimillion-dollar estates.

I began to write about the case in Pennsylvania, a woman named Betty Winstanley, just a fascinating woman. She was so interesting to talk to, and I actually went to a court hearing with her. When it was discovered I was there, I got tossed out of the courtroom, but I wrote about her in my syndicated column. I began to write about the exorbitant amount of money her guardian was charging, because I had the spreadsheet that the guardian had sent to the court. Don’t ask me how I got that, but I got that. I started to write about Betty Winstanley’s case, and Amy, I cannot tell you how many dozens and dozens of people contacted me from states across the country saying, “Me, too. Please tell my mother’s story, my brother’s story, my sister’s story, my dad’s story.” I realized, this is a nationwide problem. Nobody’s writing about this. Nobody’s talking about it.

But I’ll tell you, I found that there are some two million people in guardianship right now. Now, we heard about Britney Spears, but there are two million others living under guardianship now. Some of them, the situations might be just right—a family member who knows what the ward wants out of life and what their goals were. If they’re the guardian, that’s great. But that’s not what this book is about. This book is about all the ones that ran off the rails and enriched predators working within the system.

Biancolli: “Enriched” is the word, too, because one of the stories you tell concerns Marian Kornicki, whose story is familiar to people who read Mad In America. In fact, in your book you refer to her piece from January of last year, “Guardianship Destroyed My Family,” and she describes this nightmare situation. At one point she uses an analogy, a metaphor, that I think someone else used as well: Guardianship was used to “turn us into human ATM machines.” Whoever happens to be guardian or conservator of someone with wealth, they can basically do whatever they want with that person’s money. 

One other piece of it that I want to ask you about is the way wills are completely discounted. Someone might have expressed their desires. They might have said, “Yes, I would like to live in this little house and be near family, and then I want to leave my money to X, Y, and Z.” That might all be documented, but that can be discounted.

Dimond: And nullified by guardianship judges, yes. In Marian’s case, her sister, Terri, was stealing money from her parents. I mean, the district attorney came in and charged her sister with a crime, and still, the judge in the case said, “Well, I’m going to make both you sisters the guardians.” Well, why in the world would a judge do that? I’ll tell you why: Because the players in this abusive part of the system love conflict. They love it when a family member fights back, because that means there’s more court hearings. The guardian can charge more hourly fees, and then the guardian/conservator and the lawyers involved all have to write reports. That accumulates more fees. Who pays for everything? The ward of the court. If you fight back, you’re depleting your loved one’s money, but you’re also depleting, probably, your own inheritance. They’re using your potential inheritance against you to fight you. You see the Catch-22? 

It’s a system that is so stacked against families and wards in many instances. I found people who were not incapacitated at all, like Betty Winstanley in Pennsylvania, yet they were guardianized. She had a hearing problem, and so she’s [deemed] incapacitated. Her oldest son guardianized her in Pennsylvania and her $2 million estate. She wanted to move down to Maryland and be with her other two children, who, frankly were the only ones who ever came to visit her.

She told me actually on the phone, “My older son, he always had problems. He always fought with his siblings, and I think this is just his way of getting back at me, making me stay in Pennsylvania.” Did you think the Pennsylvania judge in that case was going to let a $2 million estate go away to another state? No, he didn’t. 

She died alone in a place where she didn’t want to be during COVID.

Biancolli: Throughout your book you tell stories like that. You also talk about the struggles and the plight of the elderly, and some of them are incapacitated or struggling with dementia. But at the same time, they should still have human rights. They should still have basic civil rights. They should still be treated as human beings, right? For the elderly, specifically, in your book you note an older man with Alzheimer’s who was found living in his guardian’s dirty basement, wearing a diaper. The guardian had stolen more than $640,000 from this man. I know that’s an extreme and horrific case, but there are also situations in nursing homes where people are drugged off their heads—where chemical restraint is so common.

You also describe in your book several cases of people who were taken from their homes and forced into facilities when they had family members who wanted to take them in. I mean, it should seem so obvious. We should be treating our elders better. Isn’t that supposedly something that we value? But apparently not. Apparently, once somebody has the slightest incompetency or incapacitation—some kind of disability, whether temporary or permanent, or they’re labeled with a psychiatric disorder—it’s, “Forget it, you don’t have any more rights.” Is that extreme, or is that pretty much the case?

Dimond: No, you said it very well. I wish I could have quoted you in the book.

My husband was one of my proofreaders. He said, “You know, every page makes me mad or sad. I can’t decide which.” 

But I do try to meld in: how does the system work? Who are the players you’re going to find in it? How do these guardians get into league with so many other people within the system, and they all know what’s happening? But nobody will tell on anybody else, because if you tell about the misbehavior going on, then you lose your place at the trough. Many guardians are becoming real estate agents now, so that when they go to the court and say, “Your Honor, I’m out of money, I’ve got to sell this house,” they get a commission off of selling the house.

There’s a judge in Polk County, Florida, right now who’s under the microscope, because he has bought up the homes of wards at very low prices and then he resells them for a big profit—and this has happened with multiple homes. If there are antiques in your house, a guardian knows an antique dealer who’s going to come in and buy the lot for a low price, and then sell it at a higher price and split it with the guardian. Cars, automobiles, collectibles, coin collections: all of a sudden they’re just gone, and the family can’t find them, and the guardian says, “Well, I don’t know. I don’t know what happened, Your Honor.”

There’s a woman named Rebecca Fierle in Florida. By the way, Florida is the worst possible state for abusive guardianships. Please, if you’re elderly, if you’ve got money, don’t retire there. I’m sure their chamber of commerce will be mad at me for saying that. But Rebecca Fierle was a guardian in Florida. She had more than 400 wards spread across several Florida counties. Now, one person cannot possibly serve 400 wards, I mean, you just can’t. But judges kept giving her more and more and more wards. That meant that immediately she got her name on everybody’s property, money, investments, homes.

She then proceeded, with no one’s knowledge, to put do-not-resuscitate orders on all of her wards. One particular man who had a little bit of money—not a lot, but he was a real problem for her, because he had a swallowing difficulty and often wound up in the hospital having to have a feeding tube. In addition to his DNR, she put a feeding tube cap order, and so the next time he had his swallowing problem and was about to asphyxiate himself, the hospital staff could only stand by and watch Steven Stryker die, because the guardian had put these orders on his medical chart. She had been beseeched by the doctors, “Please take that cap DNR off, because this guy’s going to—.” No, no, she said, “It’s all about quality of life, not quantity of life.” And so Steven Stryker died.

The State of Florida went back, did a big study and found all these DNRs on all these wards, and all this money she had gotten under the table from hospitals and whatnot. When it came to the court session, she was charged with dozens and dozens of crimes in the beginning. But by the time the trial came around, it was one count of neglect of an elderly person. And this is not in the book, because the sentence came too late: four months probation.

Biancolli: Four months probation.

Dimond: Yes. Rebecca Fierle has now registered herself as a life coach in the State of Florida. It would be my recommendation, if you need a life coach, you might not want to choose Rebecca Fierle.

Biancolli: Wow. What other recommendations do you have for people? What other advice do you have to people listening in terms of avoiding a guardianship for themselves or family members? What would you say to people?

Dimond: I’ve got a whole section in the book, and I’ll just be brief. First of all, if your family cannot come to an agreement about what to do with your vulnerable loved one, please don’t go to a lawyer first. Again, I’m sure the legal community doesn’t want me to say that—but go to family mediation first. 

It’s going to cost you a lot less, and it really is very effective when a mediator looks at all the adult children and says, “Listen, this is what’s going to happen if you start to fight amongst yourselves.” They will explain what happens in guardianship, and they will explain that the person you hurt the most is your vulnerable loved one you are trying to protect. 

If you are caught up in guardianship, try to—from the very beginning if you can, because often times these petitions just get approved without any family being in the courtroom or even the ward begin in the courtroom—engage a lawyer to suggest to the judge that they try something called Supported Decision-Making. This is a volunteer program where family, friends, even staff of the court in some states, will go in and just assist the person. They need help with their checkbook, or they need help with transportation, or they need help taking their medication every day.

It is an option, but in most states judges don’t even consider it, even when many state laws say there the judge may consider Supported Decision-Making. Well, that means they don’t have to. And they don’t.

Another thing is if you have children that are squabbling amongst themselves, and you have money, and you want to make sure you don’t get put into guardianship—everybody’s got a cellphone now, right? Set it up on your dining room table and speak to what your desires are. Do you want a guardianship, and who would you want to be the guardian? Do you want to stay in your home with healthcare aides coming in, and your money to be used for that instead of guardianship? Put it on videotape, because that’s a powerful piece of evidence to show to a judge.

May I recommend that at the very end of that—if you can—have a big family meeting while you videotape yourself. Tell your loved ones if they start fighting over this, and anyone tries to put you in guardianship, they are automatically disinherited. They don’t get any inheritance at all. Funny how that stops people from going after guardianship!

Biancolli: A motivator. What needs to change? I know that’s another massive question, and you spend a lot of time answering that in the book. Should guardianship be federally run? Do we need a national database to keep track of all of it? Should there be a national registry of guardians, a certification system nationally? You mentioned Supported Decision-Making as a good approach, but what needs to happen?

Dimond: Yes, yes, yes, and yes to everything you just said. I think guardians should be licensed by the state, and then if you do something wrong, you lose your license; you can’t practice in that arena anymore. I think all states need to have certification levels for guardians. But here is something we haven’t talked about, and I think really needs to happen: When a guardian is found doing something wrong like we have talked about here, and I talk about in the book, they need to be punished. 

There is a woman named Susan Harris in New Mexico who stole $11 million from her wards—she is doing 47 years in prison, by the way. They need to be punished, because that sends a signal to other bad actors. 

In addition, when guardians tell loved ones, “I’m sorry, you upset the ward, so you can’t visit anymore.” You go to the local police department and you say, “Hey, I can’t get in to see my elderly mother anymore, or my disabled brother. The guardian won’t let me.” You know what the law enforcement says? They say, “Sorry, there’s a judge’s rule. That there is a civil order, and we only deal in criminal matters.” You go to the district attorney. You go to the attorney general’s office. They all are hands off if a judge has ruled. They don’t want to go up against a sitting judge’s order. I think law enforcement needs to start paying attention to the fact that, no matter if there is a civil order in effect, if someone is being held against their will, that’s kidnapping. If someone’s money is disappearing, that’s either extortion or fraud or embezzlement. There are all sorts of laws that law enforcement should be looking into, and they just don’t. I think that needs to change as well.

Basically, we all need to start educating ourselves on guardianship, because even if you have a small military pension coming in every month, or you are disabled, totally disabled, you get $10,000 a month to care for you. Well, a guardian can step in and put you in a group home, an unsavory group home that costs $3,000 a month. What happens to the rest of that 10 grand? 

Read my book, frankly, or otherwise get yourself educated on my website www.dianedimond.com. There is a whole section called Guardianship Central. There’s lots of resources there. There’s a Frequently Asked Questions section, and there’s a glossary, because when you get embroiled in this system, there are all these names and phrases and positions of people within the system that come at you. “Whoa, what does all this mean?” I answer those questions for you on the website.

Biancolli: One more thing I’d like to just go back to—what should be foundational, which is civil rights protections of people, especially those most at risk. The WHO has identified forced treatment as a basic human rights issue. Why isn’t it more obvious? Why isn’t it foundational that we should be advocating for the rights of people who most need that advocacy? It should be foundational that people should have civil rights, but so frequently their civil rights are stripped from them. Why does this happen? Is this a classic case of “money is the root of all evil” or “power corrupts—absolute power corrupts absolutely.” Is that it in a nutshell?

Dimond: Yes, yes, and yes, you got it right on the head. There’s a lot of advocacy groups trying to reform guardianship right now. One of the major ones is CEAR, which you can find on Facebook, run by Terri and Rick Black, warriors in the fight. They’ve counseled more than 5,000 families about this. Tom Coleman at the Spectrum Institute fights for civil rights and disabled people. Again, what kind of country are we that we take the supposed or actually most vulnerable people and hold them incommunicado, strip them of their rights, put them in places where they don’t want to be, give them no voice of their own? I just don’t understand it, except to say nothing changes because of the lobbyists, the lawyers, the guardians, the guardian ad litems, the nursing homes, the hospital lobbyists.

When they have an elderly patient or a disabled patient in the hospital and their insurance is running out, they call their favorite guardian and say, “Hey, I got another one for you.”

Again, many guardianships work well. That’s not what I am talking about. I’m talking about the $15 billion every year that’s up for grabs, that bad actors with dollar signs in their eyes zoom in on, and the factitious guardianships they create. How about this one: there is a mechanic in Texas who was not getting paid by a wealthy man to work on his classic cars. The elderly man was having some memory issues, so the mechanic went to a lawyer in Texas and he said, “What can I do to get this guy to pay me?” The lawyer said, “Well, why don’t you guardianize him?” It worked. Suddenly this car mechanic in Texas was in charge of this multimillionaire’s entire estate. He got his $30,000-$40,000 he was owed, but he was in charge of the man’s entire wealth. It took that family a couple of years and a lot of money to get that man out of that guardianship.

But anyway, why do we do it? Because nobody stops it. The United States Congress has been having heartbreaking hearings on this since the 1980s. What comes of it? Nothing. They say, “It’s a states issue, we can’t do anything.” Well I call BS on that, Amy, because the Department of Justice goes into police departments in states when they think there have been civil rights violations, and they put those departments under watch. And they give them rules and regulations that they have to follow to keep civil rights safe. Well, why can’t they do it with guardianship? The answer is they can if they wanted to, but they don’t.

Biancolli: This has been an extraordinary conversation full of really sobering truths. Our guest today was Investigative Journalist Diane Dimond, author of the new book We’re Here to Help: When Guardianship Goes Wrong. For more on her work, see www.dianedimond.com. Diane, thank you so much for agreeing to speak with us. This has just been, as I said, an extraordinary conversation.

Dimond: Amy, thanks so much for being interested in this topic, because when I bring it up to some people, they say, “I don’t know, that sounds boring.” But it isn’t when you really delve into it.

Biancolli: It’s the opposite of boring. It’s so compelling, and it’s absolutely imperative that word gets out there that this is going on. So again, thank you.

Dimond: Thank you.

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post ‘A Playground for Predators’: Diane Dimond on The Abuses of Guardianship appeared first on Mad In America.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: I want to first thank our three guests for agreeing to be part of this panel, and I want to thank all of you out there for joining us. The topic is so compelling and important, what it means when a child of any age is in distress and what parents and other loved ones can do to support them. We’ll be hearing stories of crisis, but also stories of healing and hope. We will start with each of you introducing yourselves. Ciara, would you like to go first?

Ciara Fanlo: I would love to go first. I saw there are lots of people who are parents in the chat. [There] are people who work with teens and adolescents, and I’m here sharing the perspective of someone who was a troubled teen and spent many years of my adolescence in some form of psychiatric or residential care.

I have a story that’s probably similar to many of your children or the teens that you work with. I was full of curiosity, compassion, and energy when I was younger but as I started to grow up, I really struggled. My parents sought out lots of different interventions to try to help me. I spent time in hospital, at wilderness therapy and in a therapeutic boarding school. I have overcome my challenges. I am by no means healed or in any sort of final stage of healing, but I’m here to share some of my perspective and my story, and hopefully it’s of use and help to some of you.

Biancolli: Thank you for being here. Morna, would you like to introduce yourself?

Morna Murray: My name is Morna and I work in Providence, Rhode Island. I’m an attorney and I run a federally funded legal agency for people with disabilities, but I’m really here as a mom today and very humbled, frankly, to be here as a mother. What I have to share is about what my son has suffered. It’s not about me, and I hope that what I share today can help other parents as we support young people in our lives who we love and who may be experiencing distress.

I also want to say at the outset that while I work in the world of law and disabilities, I have never been comfortable with the terminology we use with disabilities and diagnoses. I hope that I do not offend anyone who does identify with certain terminology. I defer to people who experience differences themselves as to what language they prefer. But in our family, I have found that labels in general have been stigmatizing and unhelpful, and frankly, just inaccurate at times.

I came to this world after many years of searching for answers, not finding them, and having many people weigh in about my son’s atypical development. He has been diagnosed as having autism spectrum disorder, bipolar disorder, mood disorder, and generalized anxiety disorder, and I can’t say that any of those labels have ever really been helpful or really describe him.

I have learned a lot and I am very grateful that he now has a psychiatrist who does not believe in labels when working with him. I think more than anything over the years I’ve learned the value and necessity of humility, which my son’s psychiatrist defines as not having all the answers, a definition I really like.

Biancolli: Thank you so much for being here. I just want to add that I think it’s so important, the combination of people that we have participating in this event. Ciara, hearing your introduction—and we’re going to hear more from your story, and your experiences as an adolescent—then moving to Morna, your story, and what people need to hear from your story, what people need to know as a mother. Then we also have Sami, and he has the perspective of psychiatry. Sami, could you introduce yourself? Let us know what we should know about your work.

Sami Timimi: Thank you so much for inviting me to be part of this panel. I very much echo what has been said so far. I’m a Child and Adolescent Psychiatrist and I work in a little city in the UK called Lincoln. I’ve worked in the UK all my professional life and I’ve been a psychiatrist since 1989, so I’ve got a few years behind me.

One of the things that happened during my psychiatry training is that I began to be concerned about the claims for this model and that model, and for the treatments that we were using, which I could see from my practice seemed to be better at creating patients than alleviating people’s suffering.

It started me on a journey to find out about literature that just wasn’t talked about in the training that I was receiving. Most of my academic life has been spent thinking about the assumptions that we have. Where it’s led me is to an understanding that what we call diagnosis in psychiatry isn’t really diagnosis. It actually functions more as a commercial brand. The so-called science that we have behind what we call psychiatric knowledge is so lacking, and the outcomes from current mainstream services are so poor that it has led me to question why that is. What’s the root of this?

In my later years, I got around to thinking about the politics of all of this. What does it mean that we have financialized emotional lives? What does it mean that we’ve developed a system of mental health care that I call a McDonaldized system? One of the things that orientates my practice these days is the notion that we need to rehabilitate our emotions. I think the way we practice is we put our emotions in the category of things that are dangerous to us and things we should be suspicious of, and things that need to be controlled. I don’t think this is a system that sets out to harm people, but accidentally what I think it does is it sets you potentially on a course of an ongoing struggle with parts of you that you perceive to be abnormal in some way. Rather than getting meaning from your experiences, your emotional experiences just become meaningless torture.

Biancolli: Thank all of you for your introductions. Let’s dive into the questions for each of you so we can hear a little bit more about your perspectives and your personal stories.

Coming back to Ciara, I think we’d all like to hear a little more about your backstory as a “troubled teen” in crisis and what happened. I know you touched on this at the outset, but if you could expand on it a little bit and talk about your journey and the impact of what happened to you on your parents, to the extent that you want to talk about that. What pieces of your backstory were formative and what were your moments when you thought you could find another way?

Fanlo: My journey in the mental health system started when I was pretty young. I was eight when I first went to therapy. I was really sad and anxious as a child, and I struggled to make friends. I think my parents thought that that was abnormal, that I was going through something that I shouldn’t be going through or I was not developing in the way that I was supposed to be developing. I started going to therapy at eight, I started self-harming when I was 10, and I started taking meds when I was 12.

When I was younger, I just felt this horrible feeling of aloneness and I didn’t know how to make sense of that because I was so young. The self-harm started because I felt this urge to make sense of the way that I was feeling or make sense of the pain, and I wanted to make sense of the pain with more pain. I just did not know what was going on inside me. I think that was the first time I started feeling like I had something fundamentally wrong with me that wasn’t wrong with other kids, that I was always going to feel that way and that I had been born broken.

For a few years when I was younger, I was able to keep it together. I learned how to just put on a brave face and keep things under wraps, but when I got to high school it just completely fell apart. I just had what felt like a permanent pain in my heart. I was so sad. I felt like I was sad all the time and I filled up my head with these narratives that I’m not lovable, I’m not wanted, I’m not good enough, and I totally amplified those stories in my head.

I was just always running through these painful stories that had no purpose or had no point to them. There was no clarity or resolution in them. I was just beating myself over the head with these narratives and I felt unmoored, and like I didn’t belong anywhere. So because I was in so much pain I was like I’m going to do anything that I can to just try and dull how painful this experience is.

Maybe when I was younger and I was feeling sad and blue, my parents could have had a different approach to seeking medication for that. But when I was in high school I was cutting myself, I was running away, I wasn’t going to school, I was fighting with my parents constantly and I was making suicide attempts. I was going from one intense experience to another. I think the best way to say this is that I didn’t have this sense of internal coherence or direction. I would feel overwhelmed, and I would do something to kind of press the exit button and get out of the overwhelmed state. I would tell my parents a lie and run away from home or something. Then I’d come back and there would be all this drama and all this chaos from that. I would do something that was also intense to try and mitigate that experience like cutting myself or running away. Again, it was just like these constant cycles of self-destruction and dysfunction.

I was doing talk therapy and meds at home for many years. I took tons of different medications, and I went to many different therapists and did DBT, CBT, EMDR and neurofeedback, and nothing was changing. I still felt so wrong and broken inside. I went to a psychiatric hospital, and I was there for six weeks and I feel like I learned ways to cope with the pain there better. For example, I learned if I’m having a panic attack I can put my head in ice water. But I wasn’t getting to the root of why I was having panic attacks all the time. What was happening in my ecosystem in my internal emotional landscape making me feel this way so much of the time?

When I came back home from the hospital, I was on a home contract, which is a pretty standard practice for teens to go into residential. You agree to a series of conditions to be allowed to come home. I came home and nothing had changed and I was returned to all the same systems that I had left. It was only a matter of time before I was spiraling again.

Then my mom found a wilderness therapy program, and at that point, she had an inkling that she wanted something outside the medical model. She wanted something more natural and holistic. Wilderness therapy programs are far from perfect. I did feel very violated there and angry a lot, but wilderness and nature as a setting, as a container for therapeutic or personal work, is phenomenal.

You were asking about moments where I felt that something could maybe be different or that there could be another way, and that was the first time that I really felt there was another way to understand my struggles. That there was another way to relate to my sadness. That it wasn’t actually pathological, or it wasn’t a sign that I was broken, it was actually a feature of being a human. It was something that I needed to be present with and witness to and have kindness towards and curiosity towards.

For those of you who aren’t familiar with wilderness therapy, it’s backpacking, and I was in the woods for three months and away from devices and social media and all of that stuff. That was an essential experience for me—to be in touch with the earth and with my soul. That was a pivotal moment for me.

Then everyone goes somewhere after the wilderness therapy. Teens who are in this industry go to many programs. I went to a therapeutic boarding school after the wilderness, and that was a very intense environment. There’s a well-documented link between many residential programs and a cult called Synanon. So my school was one of the many that were based on the practices and methodology of a cult. It was a brutal place to be, and I was supposed to be there for two years. I ran away after about nine months, it was more an act of desperation. I didn’t know at that point what would work for me, but I knew what wouldn’t. I knew that it wasn’t what I was experiencing in that school.

I think that the seeds for that intuition of not knowing were laid from my time in nature, which again, I want to caveat by saying I had a powerful experience because of the nature element. I know that there are many people who have horrifically traumatic experiences in wilderness therapy. But I sort of left. I ran away from this whole paradigm of treatment because even though at that point I didn’t have the answers, I just felt so strongly that that wasn’t the way that I was going to heal. That kind of pathologization and the brutality and the criticism of it was not supportive to me feeling like a whole and healthy and functioning human.

Biancolli: I read your piece for the Guardian about your wilderness experience. What I gathered was that you almost had to reform your relationship with yourself as well as your family in some ways. Could you talk a little bit about what helped you and how those experiences inform the work you now do as a mental health coach and mentor for teens?

Fanlo: Yes, as Amy mentioned, I now work supporting teens and their families through the struggle. When people have asked me what helped me heal when I finally left the medical mental health model, I say that it was by finding people who inspired me. I went out in the world and I looked for people who had joy and who had integrity and who had passion and I admired, and I put myself in their orbit so that I could learn from them and their wisdom.

What was so hard for me when I was younger was that I had a very narrow view of the world. I was only 15-16 years old, so I didn’t have access to many adults besides my parents, the friends of my parents and the kids at my school. I felt like I was starving for real connection with people and wanting to know other ways of—as we’ve talked about—just relating to the human experience.

When I was an adult I went and tried to find that. I just tried to find people who I could learn from. I’ll say that I was functioning for a long time before I healed. To be honest, my time at that school was so horrific I was like, I cannot go back there. I will do whatever I have to do to not fall that far again. Then the other part of that was wilderness, again, an imperfect program, but adults always say to teenagers it gets better, you’re not always going to feel this way. But to me at that age, I was like, I don’t know what you’re talking about. To my memory, I’ve always felt this way, and I don’t believe that I can feel any differently. I don’t have any other reference point than this.

Even though it was complex, I did feel very differently after spending three months in the woods. That was a data point for me, like, I can feel different. Even though I don’t know how yet, I don’t know when I will, I know that I can feel differently. That knowledge that there was more possible and more available was fundamental for me. Then meeting people who were embodying that was also fundamental for me. Changing how I thought about these experiences. I think that how you choose to identify with an experience is more critical than the experience itself. I chose to see these experiences as more like initiations, but there were spiritual requirements of what I was supposed to go through to remember that I was whole and come back to who I was, and not as something that made me broken.

When I am working with teens and relating to them, there are many tools and frameworks that I can share with them. But I think the most important is being someone who they can see as not so different from them. When I think of how I would love any sort of therapeutic or healing offerings to be for people it’s drawing on the idea of ancestry, and going to the elders or the people who have gone before us, and coming back to this idea of community and learning from each other.

I tried to be someone like that. Someone who can relate to them and just help them feel that they’re not alone in what they’re feeling and that they’re going to be okay in the end, even if it doesn’t feel that way right now.

Biancolli: That’s wonderful. Because you have gone through similar experiences, your relationship is kind of like a peer, but with expertise.

Morna, if you can tell us a bit more about what happened to your son and his crisis—what he went through as a child and a young adult, and his journey since? Also, how that affected you as his mother, how you were treated, how you felt, and whether you were heard. I think we’d all benefit from what you have to say.

Murray: Thanks, Amy. And Ciara, thank you, that was so powerful. I resonated with so much of what you said. My son had developmental differences. He met his developmental milestones, but it was late. He was born in the early 90s, which is significant, because at that time in the United States, at least, it seems like half the kids in schools were on psychiatric medications or being recommended that they take Ritalin or some other medication.

Another factor that’s important in my son’s story is that his father and I are divorced. We divorced when he was five, but we are on very different ends of the psychiatric medication spectrum, which made life difficult for making decisions. However, given the fact that he has some difficulty with learning and he experienced a lot of social anxiety and anxiety in general, as soon as he entered school, we started receiving recommendations for him to be evaluated and medicated. There was a lot of pressure to medicate him from kindergarten on, which I resisted.

Let me also say in this story that I am the person who resisted in this story of ours. I’m not painting myself as some kind of hero. I didn’t know what I was doing most of the time. I was going on blind instinct. Also, I was raised to question things, and I wasn’t getting answers to the questions that I was asking. I think that the position that his father and other professionals took, though I’m not criticizing them, it’s much more mainstream, it’s much more typical. But I didn’t accept the answers that people were giving us.

In any case, fast forward to when he was 13, his psychiatrist prescribed Zoloft for him, which is an SSRI. My son at the time was underweight, small for his age, very gentle, and just the sweetest kid in the world. He started taking Zoloft, and for about two weeks he had a pretty good reaction to it, and then suddenly the bottom fell out. Within a couple of days, he wasn’t sleeping and he was becoming irritable. I called his psychiatrist, and she said just stick with it.

Then it became, like, overnight the world turned upside down. He couldn’t sleep. He went into what I have come to understand is a full-blown state of manic agitation. He was a completely different child. It was the greatest shock I’ve ever experienced. It was heartbreaking to witness and be present with him in the state that he was in, the suffering that he was experiencing.

I called his psychiatrist and she said to discontinue the Zoloft and to start him on Zyprexa, an antipsychotic. Again, I was lost. I was going to do whatever she told me to do, thinking that that was the way to help him stop this ungodly suffering that he was experiencing. My perception was that Zyprexa made him worse, which I reported to her and she said that was impossible. I have since learned that you can have medication-induced mania, but that was not something that I had found back then and certainly not something that a psychiatrist believed.

By the grace of God, I had some instinct that going to the hospital was not going to be a good thing, and I resisted him being hospitalized. I was lucky to have an employer who was very understanding and allowed me to take leave. I just stayed present to him during this episode, which lasted about two weeks. I did things to keep his environment calm and hoped that this extreme state of agitation would pass. I figured that it would pass and somehow we would go back to some state of normalcy. But that’s not what happened.

Once he was not agitated any longer and was on the antipsychotics, that led to an immediate diagnosis of bipolar disorder, which I questioned, as I didn’t understand—since he hadn’t had symptoms like this before. I was told by a psychiatrist that people with bipolar disorder often have manic reactions to SSRIs and that was the basis for the diagnosis. I was completely alone in questioning this, which was very difficult and somewhat crazy-making.

Again, this is not to criticize people who were acting probably with very good intentions. But it was crazy-making to see these kinds of decisions being made almost overnight about this child who had never experienced anything but anxiety up to this point and was highly sensitive to just about everything in his environment, including allergens, foods, and fabrics. It was very difficult. It started me into a phase of asking questions, not getting answers, being considered naive and argumentative, and being labeled anti-medication, when actually I’m not anti-medication.

As my son’s medications grew to address side effects—and I know this story is very typical for people now—he came to be on five and six psychiatric medications at the same time, which I questioned. I questioned the interaction of the medications. I was always told that they were perfectly safe, that they had been tested, and that anything that was going on with him was not due to medications but was due to the old chemical imbalance mental illness.

Maybe I should just stop there. That was his significant crisis that started us down the road of medications. He then went through a subsequent crisis as a young adult which led to a lot of good things, but it was very bad for a period of time as well.

Biancolli: Unfortunately, listening to this I know there are many, many people who can relate, and it’s not an unusual story that you’re telling. If you could maybe say what helped—and what can you say to other parents who are going through something similar?—that would maybe give a spark of light.

Murray: Yeah, I mean, it’s dark in this world many times, and I want to acknowledge that, but I have found help and I have found hope and support. He ended up in a setting that was geared around independent living skills and was at a lower level of medication than he had been in years—just about six years ago, at the age of 24. He changed the medication and had a negative reaction again, which led to a flood of medications again, and he ended up hospitalized. That is when I learned, you would think I would have known this by now, that going into the hospital you lose all control over everything. That prompted me to start looking around and saying this just can’t work, this isn’t helping him and is hurting him. The stuff that’s happening with him is creating the same symptoms that we were purporting to treat.

I started reaching out to people and I read Anatomy of an Epidemic. I had never heard of this before and started reaching out to authors who I will say were, without fail, kind, compassionate, and accessible, whereas I had difficulty reaching my son’s psychiatrist. I found that I could email authors of books, and they would respond to me within a day. I just started educating myself honestly and looking for alternatives. Knowing that as a parent, even being a person who worked in this field, you are not taken seriously by our psychiatric system. I know that there are people who do listen, so I’m not making a sweeping generalization. But as a whole, it is a patriarchal system that is not designed to respond to parents, particularly mothers.

I always found it curious that mostly male psychiatrists would label mothers as hysterical when their children were in crisis as if we were not supposed to be upset when our children are in crisis. But I did find providers, I found other parents, and I found people who could help and who could speak that language more than I could.

I learned to be factual and to be very non-emotional when dealing with people in the psychiatric system. I learned the value of keeping my son at home, not involved in any institutional setting, if he was experiencing any kind of semi-crisis. I will say too on a personal level, staying spiritually grounded, taking care of myself, and listening to my instincts—these are all things I learned throughout this process of being of the greatest support to my son and connecting with other parents.

I think that the more that we connect [the better], and the more that we talk about this, and the more that we push back on the fact that treating suffering like it’s some kind of pathological disease is not helping anyone at all. Parents are part of this, too, a big part of this. I don’t think parents want to make mistakes, but we do. It’s very difficult to stand alone in this environment, and so I do think that finding support whenever you can [is important].

I noticed there was a question in the chat earlier: How do you find a psychiatrist who doesn’t use labels? It takes a lot of looking. I started through Mad in America’s resources and just called and called and called until I found someone who is wonderful. You have to not give up. I guess that’s the theme of what I’ve learned.

Biancolli: Not give up, wow. That’s it in a nutshell. Unfortunately, another piece of it that is nearly universal is the way parents aren’t heard. That’s so important, the element of being heard, wanting to be heard, and having to adjust your own emotions to be heard. Thank you so much.

We’re going to move on to Sami now. If you could tell us a little bit about how you came to this place professionally. I’m just curious why you became a child and adolescent psychiatrist to begin with. I know you also touch on that in your book, Insane Medicine. But if you could tell people what you saw that brought you to your critical psychiatry perspective. You also talk in your book about the McDonaldized system and the branding. What did you see back then?

Timimi: When you’re telling any story, there is a choice about when you start the clock. I could start the clock by going right back to my childhood. I grew up in Iraq, as my father is Iraqi and my mother is English. I had to leave when I was 14 because of a deteriorating political situation. I came with my older brother and we each stayed in different bits of the extended family in England while the rest of the family was still in Iraq. There was that kind of culture shock and the beginning of understanding that there are different ways of viewing the world that make perfect sense. Different people in different contexts.

I also had parts of my family who were very religious and parts of my family who were very political, and they disagreed with each other. The political part felt that the religious part was taking them down the wrong line, and vice versa. I think from my growing-up years I’ve perhaps had some training in being able to look at belief systems and question who has the truth. During my training in psychiatry and then in child psychiatry, that was one of the things that I kept trying to find: What is the basis for these things that were being taught?

I remember one of the moments that really got me started on this critical journey was when I first went into child psychiatry. My first job in child psychiatry was in 1992, and in many ways, I consider myself a traditional child psychiatrist, because where I worked was predominantly systemic in its way of thinking. It was understood that children live in contexts because a lot of the decisions in their lives are not made by them, but by the people in various caring relationships to them. But also it understood that children are developing. The idea that things are always in motion and changing, rather than the idea of something static, was also part of the way we practised. In my first job in child psychiatry, we didn’t use any diagnosis, basically. The young people who presented to us were more or less categorized, if they were at all, by their presenting problem. It could be behavior problems, it could be self-harm or suicidal ideation. So in those days we just didn’t use those concepts.

Then, like most things that happen in America, eventually ideas start crossing over the pond, as we call it. ADHD was beginning to grow as a concept. I was working with a consultant in my latter training years where it was beginning to be talked about in the UK. This is the mid-90s. He said he wanted to do a project on ADHD amongst the local population because we were working in a part of London that had quite a sizable ethnic minority population. He asked me if I would join him and I did. I did all the background research looking at various papers and the history and so on. The thing that I just couldn’t get my head around was what is ADHD. Surely, it’s just not those behaviors of attention deficit, hyperactivity and impulsivity—and of course, that’s all it was. I couldn’t get a sense of what we meant by ADHD. That kind of started me on that journey of questioning.

It was very different to much of the rest of medicine, but not all of the rest of medicine, because you know what diabetes is, and there is what you might consider an empirical anchor, something you can measure. Diabetes is defined as blood sugar that’s too high, and you have a way of measuring that. Now, there are all sorts of debates about where the cutoff is, when to use diet and what the complicating factors are, and what might be the secondary causes of raised blood sugar. But we know what sort of thing diabetes is. The more I practiced in psychiatry, the more I realized that we don’t even know what sort of thing we’re talking about here. What we’re calling diagnoses are just descriptions. They don’t provide a function of answering that “why” question, not in the same way that you find in much of but not all of the rest of medicine.

I have to say that I feel very humbled by listening to Ciara and Morna, and I think they really explained the consequences for real people in their real lives of carrying on with believing that what we have is a diagnostic system. In other words, when you diagnose someone with ADHD or depression or bipolar disorder, you’ve said the reason for you having these experiences is because you have this condition. So we use it as if it’s a diagnosis, as if it has explanatory power, but it doesn’t. Description can’t cause itself. You can’t say low mood is caused by depression, in the same way that you can’t say the pain in my head is caused by a headache. The description is just another way of saying the same thing.

What then happens is how we then end up in the situation that Morna was in with her son, and Ciara was in, where you’re chasing this idea that there’s something wrong in you that requires you to keep putting new diagnoses and new treatments. I guess I came to realize that all the treatments that we provide, therapy as well as medication, when it’s done within the framework of diagnosis, they are better at creating long-term patients—and all the evidence says that.

Biancolli: What you’re saying is you’re affirming the stories that we just heard from your perspective as a psychiatrist, what you’ve seen in terms of the harms and the failures of the system. My second question for you is: When a parent with a child in crisis comes to you, what can you tell them that actually helps? What have you learned from your practice that actually helps? What do you say to them? How should they support their kids?

Timimi: Well, I like to see young people with their parents and I like them to be involved in those conversations. Of course, there isn’t a formula, because in some ways that’s the problem with diagnosis, with medication, and with most of the therapies that we used—they seem to imagine that there is a formula that you follow. But I do have a few principles that I try to keep in mind in my work. I think one of the ones that has become most important to me is that I feel in a way that there’s never been a generation as pathologized as the current generation. There is something awful about having created a system that locates a disorder, a dysfunction, a dysregulation, a pathology, a disease that locates the nature of the problem that you’re experiencing as being in yourself or in your child in some way.

The thing that I always try to maintain is that there is nothing wrong with you, there is nothing wrong in you. You do not have a disease, you do not have a dysfunction, your emotions are not dysregulated.

This goes back many years. I remember having this conversation with somebody who I’d been seeing for a good couple of years, and we tried all sorts of things. Then one day she was coming up towards the time where we would have to think about discharging her from our young person’s service. She said to me something along the lines that she’s never going to get rid of whatever this is inside of her. [It’s]There’s always going to be there, and she’s sort of given up hope.

It kind of spurred us on to having a conversation about what does she mean. It was then that I began to realize just how powerful it is when you construct your experience as being the result of something that she was labeling as a mental illness. She had labeled her experience as being a mental illness. Even in the times that she was feeling better, it was a bit like a shadow at the back of her mind that was always waiting to pounce, and that she couldn’t get rid of.

After that conversation, we only had a few more sessions. She began to realize that instead of fighting or feeling that she’s in some sort of ongoing struggle and having to suppress part of her, or having to try and find a way to control or get rid of it, that it’s about learning to live alongside [it]—because there’s nothing wrong in there. Listening to Ciara, I was reminded of so many stories I’ve heard like that. This is the bit that I find hard to predict. As long as you keep in mind that there’s nothing wrong with the person, there often comes a moment where the young person starts to click that this is not something that they should be trying to find a cure for. This is not something that they need to find a way to control or suppress, or even to express. It’s not about catharsis. It’s not about suppressing. It’s about learning, to just be with the way that you are.

For me, a lot of it is now about patience, and about keeping the idea that that opportunity will come. I don’t know how it will come. I don’t know when it will come. The young people I see, they’re bright, they’re creative, and they’re empathic. Even stories of suffering, I think, as well, we get too caught up with the trauma aspect of suffering understandably. But stories of suffering are also stories of survival. It’s being able to see that the person in front of you is more than just the problem that they’re coming in with.

Biancolli: The classic framing of questions is what happened to you” versus “what’s wrong with you.” You mentioned young people grappling with this idea that they have a lifelong illness, when in fact it’s just life. As someone just said in the chat, “I’m a human, not a pathology.”

But a couple of follow-up questions I have for you all—and you can just jump in with answers. One is: How important is listening and being heard? That’s been one of the recurring themes as a parent and as a teen. How important is that from each of your perspectives?

Then the other question that I’d like to hear your thoughts on is: How should the system change? How can it change in some sort of harm reduction way, in which practice can change?

Timimi: In terms of being heard,  I might be slightly controversial here, because it’s a kind of a banal question. All doctors imagine that they’re good at listening and observing. To me, it is: What is the framework that we have in our mind when we listen to people? Because the questions we ask, I think, are probably just as important as the answers that we hear. I just wanted to sort of complicate that a little bit more, because we need to listen but we also need to think about how the questions that we ask are framed.

I find sometimes that I can be listening to a flow, but I have certain points where I want to interrupt because I want to see if the conversation can move in a different direction. Or see if rather than talking to me, you are talking to your son or your daughter. Maybe you should be having that conversation with them and I can listen to that. I think there is something about the framework we have when we’re listening.

In terms of services, to me, there are all sorts of reformist things that we can do. But I’m personally somebody who’s looking forward to the time that we have a paradigm shift. For me, the paradigm shift is not to do with medication, it’s not to do with therapy, it’s to do with diagnosis. I think we have to understand that what we have is not diagnosis, and we have to drop the language and all the concepts attached to diagnosis and services being designed around an idea of diagnosis.

Biancolli: Thoughts on that, Ciara or Morna?

Murray: I was going to say something about being heard. It’s interesting because I think as mothers—and I’m not discounting fathers in this, but mothers do play a different type of role sometimes. If you get to a provider who appears to be listening to you, you unleash an entire lifetime of experiences often, and that can be a turn-off, I’m sure, to many providers. There is a pent-upness to wanting to be heard because you feel your child’s suffering so acutely and you want it to stop, or you want to provide something that is at least helpful. I guess I see it as almost being seen and understood and creating an authentic connection.

I think the first time that I experienced that was one of the hugest releases of my life, and it was so powerful. You can’t fake that. When someone’s connecting with you and hearing you, you know it. I know from my son’s experience that he does too, so it’s significant.

Biancolli: Thank you.

Fanlo: I wanted to echo what Sami said about the questions and the frameworks, because I remember going to doctors and having them ask me to rate my suicidality on a scale. It would be like are you at 8.5, or you were 5, and there wouldn’t be a further question driving me to go into what was going on, questions that were oriented towards my soul or my heart.

I think in terms of how I would like to see the paradigm shift, speaking from the teenager’s perspective and the treatment programs that exist for teens, they often identify the teen as the designated patient, or they are like the black sheep, like they are the person in the family who’s the most outwardly dysfunctional. A lot of programs fail to see that someone is a product of the ecosystem that they’re living in. This is not at all to place blame on my family by any means, but to think about the kinds of communities and structures that someone is returning to or living in. Community and a sense of belonging and a sense of love in the home can be preventative against a lot of these conditions. I think just focusing on the integration part of people who do seek healing and care is really important.

Biancolli: I have a couple of questions that came from the Q&A box. Starting with you, Ciara. Was there a way that adults built their relationships with you that made a difference to you as an adolescent?

Fanlo: Yes. There were a lot of adults who I felt looked at me like something to be fixed. We’ve talked a lot about how I was slapped with so many diagnoses and felt very limited in our relationship, because they saw me as someone who was borderline, or they saw me as someone who had oppositional defiance disorder.

I think that there were other adults who approached me with curiosity about my experience and unconditional love. I think that unconditional love is not focusing on what’s going wrong, it’s like focusing on the beauty of what [they] can become. When someone is in pain, when someone is suicidal, do you just look at the pain that they’re having and do you just look at their behavior, or do you see the bigger picture? Do you see all their potential and all that they can become in the whole totality of who they are? There were adults who related to me that way, and they would see me like me beyond how I was behaving in that moment. Having the experience of being related to that way helped me feel safe with them and open to building rapport with them.

Biancolli: Oh, that’s wonderful. I should have mentioned before I asked this question, which is probably for Sami, but if anybody else wants to hop in that’s great. But I should reiterate that Mad in America can’t provide or sanction any particular medical advice, so just general themes. With that said, one of the people in the Q&A box asked, What about people like my grandson, who has violent thoughts, and is a compulsive liar? How do I teach him who he is?

Timimi: That’s not a question that is possible to answer. I don’t know this person, I don’t know the grandson. I don’t know the situation, don’t know the history. Don’t know his strengths. I kind of believe that every kid has something great about them whether we choose to see them or not, whether in our stress as parents or in our own communities. If we have things that are causing various types of stress, financial, marital, school-based, whatever it is, just as human beings, it becomes harder and harder for us to see things other than the things that worry us.

There’s that phrase that you come home and kick the cat. It’s that idea that when you’re feeling stressed, you’re going to take it out on those around you, so there’s going to be tension in the home. If you look at things more broadly and politically, we have societies where there is a huge amount of stress in all sorts of ways and a huge amount of alienation. These are sometimes not great environments that allow you to just accept children for the way they are.

Often children then grow up feeling that to have some sense of value, they have to be good at something, they have to do something. It’s what I call the ‘compare and compete culture’. There are all sorts of background things that I think make it harder for us to see what it was that we loved about this kid or what it was that was great about them. The only advice that I can give is to try and remember that every kid has within them something that makes them fantastic.

Biancolli: That sounds like it’s essential and deeply human advice, because isn’t that true of everyone? We are all working in different ways, and we all have sources of strength and beauty. Any other thoughts, Morna or Ciara, on that question, before I move on?

Murray: Just that Sami should be the psychiatrist for everyone in the world.

Biancolli: He’s probably going to be getting a lot of emails after this. So Morna, do you know of any community or organization working to change the narrative in the system? The person who asked the question says, “I am doing that on an individual basis and looking to team up with others.” I’m assuming they mean the psychiatric system, the mental health system, and medication as pertaining to youth.

Murray: I don’t know of any particular organization focused on that. I think there are lots of little efforts going on in terms of parents connecting. My organization is called the PNA and I know one of the PNAs, the Maryland group, has filed a class action lawsuit based on polypharmacy of kids in foster care. That’s the first time I’ve seen something like that happening. But this is not mainstream stuff. I have disagreements within my own family and it can be difficult to make progress. Unfortunately, as Sami was describing—and I think we’re all saying, in a way, how isolationist all of this can be and how alienating this kind of treatment is. A lot of us are feeling very alone.

I guess I will also mention, and Ciara might be able to speak to this more pertinently, I do think that peer support is key for teens and young adults in crisis. Having peers to go to and then getting that sense that there’s nothing fundamentally wrong with me. I am not fundamentally flawed or pathological. I’m okay, you know? But no, I don’t know of a movement. I think we’re on the brink of it, I hope.

Biancolli: You’re right about the mainstream too—I mean, it’s very dominated by completely different narratives than what we’re discussing today. But for everyone, how can the current providers better educate families, children and other professionals to understand the adolescent transitional period not as pathology? Thoughts?

Timimi: I kind of wonder, how is it that we started this war on our emotions? Adolescence is a time, of course, when those emotions intensify and they start being accompanied by existential questions like, Who am I? Where do I fit in? What’s the meaning of being alive? What does the future hold? Who sees value in me? What do I look like to the rest of the world?

I often talk to families and young people because, sadly, we get a lot of people who come who are convinced, having Googled and spoken to others, that their young person has bipolar disorder or ADHD or something like that. I explain to people that adolescence is a bipolar disorder, get over it, you just have to accept. It’s a time when people feel the intensity of emotions.

There are very few things that I can predict. But the one thing that I can predict, which I say to people, is that you will change. That’s the only thing I can predict with certainty. Your interests may change, the music that you like might change, your idea of what you want to do in the future might change, the people you hang out with might change. That’s the one thing that I can predict with any certainty.

I don’t know how as a culture we got to this point where we’ve become so afraid of experiencing intense emotions that we started to label them as potentially problematic. Also there’s no mechanism in terms of what I would call ordinary and/or understandable ways of getting your head around them. You need an expert these days to help you understand what is wrong, and why is a person behaving like that. We’ve really narrowed the idea of what is expected and understood as ordinary. I don’t use the word normal, because the opposite of normal is abnormal. Whereas I always use the word ordinary, where extraordinary is the opposite. But we’ve narrowed this idea of what is within the realm of the acceptable and the ordinary.

In a lot of the work that I do now with young people and families, I tend to get as a consultant in the team the ones who’ve gotten stuck or have been through lots of therapy or have been in inpatient units, and they get sent out on all these medications. Most of the work that I do is essentially trying to deconstruct that and trying to help people appreciate that there’s actually nothing wrong with them, or rather nothing wrong in them.

Biancolli: I just keep writing down things that you’re saying just so I remember them. So many nuggets in there. Morna and Ciara, any thoughts on that?

Fanlo: I was thinking, when Sami was talking, that there does seem to be this prevalent obsession in the culture with things being good all the time, and being okay. This mentality that everything has to be happy and positive and just so. I think that we’ve forgotten that there are seasons to life and cycles to life. You wouldn’t expect an infant to be able to talk when they’re three months old. There are certain struggles that adolescents have that are developmentally appropriate, because when you are grappling with questions like where do I fit in, where do I belong, do I have value, and what is the meaning of me being here?—those can naturally stoke some feelings of anxiety, sadness, or existential dread. That doesn’t mean there’s anything wrong.

I think what’s so ironic is that when people try to fix the problem, it exacerbates the problem because it’s just endorsing the idea that there is a problem. If you have a child who is presenting with sadness, or anxiety about something at school, maybe that’s okay that they feel that way, instead of labeling it and then making it a huge thing. That’s going to be a thing, then, for years that they’re going to carry. It’s just a part of their journey, and it’s just part of what they’re experiencing. I really appreciate what Sami was saying about helping people unwind that assumption that something is wrong and, yes, like making every aspect of someone’s expression a pathology.

Biancolli: I was also struck that someone in the chat noted that prolonged grief disorder is now in the DSM. Grief, which has always had a little asterisk over it as the one extreme emotion you’re allowed to have because it makes perfect sense on a human level, has now been pathologized.

Murray: I wanted to just kind of add that people with developmental differences are often diagnosed with autism or whatever. I noticed somebody in the chat had said that they identify as neurodivergent, a term that I know my son likes. I think that’s even amplifying the adolescence changes that are going on. I love the chapter in your book, Sami, about Autism Spectrum Disorder. I’ve read that a few times now and it makes a lot of sense to me.

But the other thing that I’ve often questioned is the use of psychiatric medications for people with developmental differences and brains that are maybe wired differently—and how we know so little about that. But that on top of one of the questions that I used to ask all the time in my son’s teen years was, Isn’t this puberty, as well? All of those changes that are going on in adolescence are quite something, and calling it a war on adolescence I think is very accurate.

Biancolli: That’s one of the things I wrote down. There are just so many truths said so succinctly. Okay, this is another question. It seems that today parents have lost connection with their children due to millions of distractions and constant pressure to achieve some great thing. Are there constant unrealistic expectations for our children and from parents as well?

Murray: Yes, I mean, oh gosh, our poor kids are expected to be perfect and excel at every possible thing under the sun. Again, speaking as a parent now, I don’t even want to get into the history of mother blaming when it comes to developmental differences, but that is still alive and well. I am not here to drag that out, but it’s a barrier for young people. Forget about what it does to mothers, it cuts off that communication and just sort of puts somebody over there—as [if] their input is not valid.

Fanlo: Yes. I think there’s way too much expectation on teenagers. I think people say this all the time, but I can’t overemphasize its impact. I think that social media has started as a siren in the background. People are always comparing themselves and getting this huge barrage of information and being reminded of people’s successes all the time. There’s so much pressure to just be perfect in every way, like academically, physically, socially and so on.

I think that there is a lot of pressure on parents, because my parents didn’t necessarily have a lot of family nearby and people like aunts and uncles or grandparents that we could rely on during this time. It was so much pressure on them to be everything for me and figure everything out themselves, instead of having a broader family structure or broader communities where they didn’t have to hold everything on their own.

Timimi: I just want to echo what both Morna and Ciara are saying, because just as it’s become harder to be an ordinary kid, I think it’s harder to be an ordinary parent these days. These expectations on our kids—they transmit through to the parents. The whole mother-blaming stuff is not just in our culture, it’s also in our therapeutic cultures. It’s very widespread.

When things go well, mothers don’t get any praise for it. Occasionally fathers do for some reason. When things go badly it seems to fall on the mothers to be sorting it out. One of the things that I’ve come to think is important is that we also need to allow parents to be able to have a voice, to be listened to. One of the things I say to parents is that all good parents feel guilty most of the time about their kids. You worry, should I have done this? Should I have done that? Have I been too soft? Have I been too hard? Have I helped enough? Have I spoken to them enough? Am I close enough? There’s nothing I can do to change that. You’re going to feel guilty whatever I do, so we might as well just accept that and put that to one side. But we have created a culture where it’s just hard to be an ordinary parent and an ordinary kid.

Biancolli: I think on that note it is a good time to reflect on some of the themes of ordinary parent, ordinary kid. Sami, what you were saying earlier about the idea of ordinary as opposed to normal, abnormal: One of the things I keep hearing is that we should expand our understanding of what it means to be an ordinary kid or an ordinary teen.

Some other themes that have popped out were the importance of listening as we’re talking, and that there can be hope. I think these stories should be getting so much attention because personal stories convey such hope. Just the fact that Ciara, you’re here, and Morna, you’re here talking about your son—and just all of this, I think, conveys both the humanity of what people go through, the ordinariness, to use that term again, and also the hope. What other themes do you think emerged?

Murray: Well, I would say the critical need for non-pathologizing experts like Sami. I just can’t say enough about that. I know that we all know how rare he is, or someone like him. But that changes everything when someone like that is involved with your family. Suddenly everything is okay. It’s okay to breathe, and maybe things will be okay, and just changing that mentality leads to countless other changes in one’s interactions with your children, with your partner, and with your other children. I do think that is just so key, that acceptance and compassion and love for people.

Biancolli: This is the ultimate word, isn’t it? Love is acceptance.

Fanlo: Yeah, I would echo what Morna said about the importance of changing how we relate to and approach these pains that people have—changing the language, changing the mentality. I love what you said, Amy, about just expanding our idea of what is ordinary and seeing the humanity in people. I think people, when they get into these situations, can often feel like a patient or like an experiment. And how important and significant it is to relate to people as human beings and their struggles as core parts of their story, but not something that is a limitation for them.

Timimi: I would just add that the harder bit is how we find a way to change the public narrative. Because of course a lot of families do come, understandably, and young people, understandably, hoping or expecting that you’re going to make a diagnosis and have a specific prescribed treatment because that is what we are now teaching in the media and in the way our services work. That’s something that will need to change for us to be able to move towards greater acceptance and popularity of non-pathologizing services.

I’d just like to add what an honor it’s been to have shared a panel with Morna and Ciara, what wonderful people so willing to share your stories. I think is a very precious thing that you’re doing.

Murray: I would just echo thanks, and what an honor it’s been to be here with my co-panelists, and with you, Amy and Carina. Thank you so much. Thanks for the comments from everybody who’s been listening.

Fanlo: I’m so honored to be invited here to speak with two such phenomenal people and the whole Mad in America team for bringing us together—and to all of you who came to listen, and for all of your comments in the chat. Thank you so much for being here and for the work that you were doing in the world to be part of the change.

Biancolli: Just so powerful, hearing stories and observations. It offers a window into a new way forward for families, for individuals, for all of us humans. I want to thank all of you, Ciara Fanlo, Morna Murray and Sami Timimi, for agreeing to participate and for sharing your experiences and all that you’ve learned.

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Family Panel Discussion – Supporting a Child, Teen, or Young Person in Crisis appeared first on Mad In America.

An expert in collaborative dialogical practices, Susan Swim is also a researcher whose topics include family reunification, helping people recover from trauma after previously unsuccessful treatments, and process ethics—which she’s described as “what is right and good for every client in therapy.” 

She’s also on the faculty of the Houston Galveston Institute, where she first started teaching in the early 1980s. In the past she worked for the Taos Institute and taught at Loma Linda University in Loma Linda, California. She’s written extensively on many topics and is the former editor of the Journal of Systemic Therapies. 

Our other guest today is the father of a daughter who was first hospitalized at age 13 and endured years of psychiatric treatment, diagnoses, drugs, and more hospitalizations before embarking on a path to healing at the Institute. 

The father will remain anonymous. 

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: Thanks so much for agreeing to have this conversation, which is just so important. 

Susan Swim: Thank you, Amy.

Father: Thank you.

Amy Biancolli: I want to start off with a question for you, Dr. Swim, just to define something so that people listening will know what you’re talking about. The term “collaborative-dialogical practice”—that’s what you do at the Institute. For our listeners who aren’t familiar with these different approaches, could you define it and could you describe it in everyday terms?

Swim: Collaborative-dialogical practices used to be called collaborative language systems approach, and it was a type of theoretical—we call the theoretical posture—that we developed in the early ‘80s. And it was along with various other theorists, clinicians in the field, that we all came together, and we’re trying to understand how we could work with people in a different way than what was the traditional diagnosing and treating somebody. 

Our premises were that the diagnoses, and the deficiency language around the diagnoses, led to more trauma than the original trauma that people came in for. There were a lot of people, at that point in time, doing research about this, and studying this, and the basic premises were that through conversation and relationships, people get better—and it’s through normal, everyday conversations that do not contain even words that describe people in efficient ways. 

So if someone comes in for our services—and I use the word “therapy” loosely, because I think that some of us are trying to get away from even calling us therapists, or healers, or any of those types of things—but for people who want to engage in helping people overcome hopelessness and severe obstacles—we work with them as people. We talk with them in common language. We don’t say, “Hi, I heard your story. I think you’re bipolar, and this is something that you’re going to have to understand that you’re going to be limited through life, but you can find techniques to help you with it.”

Those conversations never take place. Our conversations are client-led, and what they feel is going on with them, and so most of the time those are conversations of pain and hopelessness. And collaboratively collectively, we generate new meaning through the participants that are talking about the suffering.

Biancolli: Thank you for explaining that. My follow-up question for you is also a question for the father who’s with us, which is: How does that play out? For the Father, how did your daughter, your family, experience this? How is it different from the usual treatments your daughter got? But to lead into that, if you could tell us a little bit about your daughter’s backstory and her difficulties—what she had gone through—and then what her treatments were, and how it was different at the Institute.

Father: Well, it first started from the school. The school wanted her to go to a psychiatric hospital, actually, and that was the beginning. Of course, now, they put her on medication. My daughter started finding other people that have issues, and they educated each other with the wrong ideas, and that’s how it started. And there was never-ending, never-ending, hospitalization after hospitalization and different medications that never healed her. 

And I was seeing the changes in her all the time, all the time: different medications, different doctors. Four years ago, I met Dr. Swim and her team, and it was right before COVID. So, we started taking my daughter to the horse ranch, and she felt really good at that time— till COVID came up and they had to close the place, and then things started getting worse again. She was getting better at the Institute. Then my daughter got bad again—and again, hospitalization after hospitalization. 

But almost two years ago, things started changing towards the better. When it opened up after COVID, we started going back to the ranch. She really liked horses, of course, animals—because it’s nature, and she’s a nature person. She always has been. It’s a beautiful life right now that we have. And she’s back to herself—like, my daughter, how I used to know her when she was a kid. She always is a helping person, wanting to help others. I wish you could see her now. She helps people. She goes to church now, and we’re so happy. We have our family back. It’s a beautiful thing.

Biancolli: It is beautiful. I’m curious about your daughter’s entry into the system. What was she going through? What was the distress that first signaled to people around her—whether it was teachers or whoever—that she required treatment? What was her initial distress, and what was her initial diagnosis? What triggered it?

Father: So in the beginning, it was bullying from the school, actually. Supposedly, she was going to hurt herself. That’s what we heard from the school. 

They don’t do anything about it, and they want to hospitalize her—because she wants to hurt herself. So that’s when the law came in, as police removed her from my house for a 72-hour hold. And that was the beginning. That was the beginning of all the bad things that started happening to her.

Biancolli: Thank you. Thank you for explaining that.

Swim: I moved here in 2002, and we started working with a lot of children that were very hopeless. And what happens is that these children tell a friend, right, that “I thought about hurting myself.” There’s no means, no plans, no intent, but there’s a zero-tolerance policy. 

Then it’s very easy for these children to be hospitalized—because they don’t know they’re going to be hospitalized. They’re taken away from school, sometimes in a police car, and they’re put into holding cells at local hospitals. So a lot of times these are locked rooms where the children go in. They’re 12 or 13, they can’t see their parents, they’re crying for their parents.

And then, because of these reactions—not only from the screening at the school, but what happens at the psychiatric facility holding area—those symptoms are seen as very escalated, right? So then something that might have been going to school one day and talking to a friend now has a massive, major diagnosis and treatment. I think this was something similar to what this family found themselves in very rapidly, and they weren’t really prepared for the loss of autonomy in trying to help their own child.

Father: Actually, that’s exactly what happened, Dr. Swim. Because the school, and the school district, heard it, and they put her in a psych ward for a 72-hour hold. That was the beginning.

Biancolli: So what you’re describing is a situation in which teachers and administrators are making a decision for your daughter based on something that somebody heard—but then they’re not listening to you as the father. I’m guessing, correct me if I’m wrong, that probably your daughter didn’t really feel heard. And does that point to the significance of having a conversation with the young person in distress? Is that what Now I See a Person Institute is trying to prioritize? Just see, literally see, that young person as a human being, as a person?

Father: Exactly. That’s what it was, actually. [With the school and the law] we didn’t have say-so, they didn’t listen to us. They have the power to do whatever they want, and that’s what they did. They didn’t listen to us. No matter what we said—even our minister came to our house, he was with us—they didn’t listen. They just took her away. “We have to hold her 72 hours.” And, exactly, they took her to a holding cell. Not jail, but it looks like jail, a 72-hour holding cell. And there you go. That was the beginning, yes.

Swim: I’m sure your listeners know the trauma that’s involved in this: A young child being put in a police car, taken and locked up, not being able to be with their parents, being told that they’re a diagnosis, and that they’re mentally ill. And it’s insinuated that their parents did something wrong. 

Just the very nature of separating the parents starts to chisel down that trust between the child and the parent—versus the child and, kind of, the new parental role models, who are the mental health professionals or the clinicians. This is not in any way an isolated incident, and the parents automatically, unfortunately, are suspect—that they did something wrong, that they did something negligent. 

When you have a young person, and this happens to them, the whole self-identity is so shaky. What they had known one day is much different than what they knew the next day, and people try to say it’s through the trauma, right? Through the trauma of what had happened before. But in our eyes, it is the trauma of the treatment. The treatment is so severe that it’s like being caught in a riptide. They don’t know what’s up, they don’t know what’s down, they don’t know who to trust. They are so fragile, and in that fragility, they’re hopeless that life is ever going to get better—and they eventually just do want to kill themselves because the pressure of living every day is so difficult. 

So a lot of our clients will be put in a hospital, and then out for a couple of months. Put back in, out for a couple. And by that time, they are seen as not being able to get well. And they have to have conservatorship, because they will not be able to take care of themselves.

In talking with all of our clients, they have this history of what happened when they entered into the mental health field. They thought they were going to have someone to talk to, to support them, to kind of comfort them —and not that they were going to learn a completely new language that describes themselves, the world, and their family. In our state, and most states, whenever a child is hospitalized, there is an automatic report to the Department of Children and Family Services [DCFS], and so can you imagine, if you have so many hospitalizations, how many times the Department of Children and Family Services is called in.

Biancolli: I would like to ask about the nature of trust, which is a word you used, Dr. Swim. And from what I’ve read about the Institute, and listening to your podcast, it seems like building trust is a huge piece of what you do. How difficult is it to acquire, maintain, and encourage trust with someone like the daughter that the father here is describing? And also, with the father? After having been through all of this systemic difficulty, trauma with the system, how do you manage to convey to these people that “we’re not going to judge you. We’re going to listen to you. We’re going to let you direct this conversation.” How do you do that?

Swim: At first we started doing this with horses—and one of the things, on that first day, I knew that we had something profound happening. It’s that when you go into a horse ranch, and you’re dressed in a pair of jeans and a pair of boots and a shirt, and everybody else is casually dressed, it very much evens everything. Even though there’s inherent power and hierarchy, it’s not screaming and yelling at you. You come into a normal, ordinary place where everybody is the same—except people are suffering more than others. 

There’s an abundance of ordinary things just to talk about, like the horses or squirrels or rabbits, or—oh my goodness, it’s endless, the conversations. And it goes so much with our theoretical presence of not being on problem-talk, of not talking about deficiency all the time, because that deficiency is just a little bit of who we are. We are so many other things that happen to us. This isn’t psychoanalysis.

This is about having real-life conversations with everybody about how each person is suffering, and how each person wants to be able to have a different type of path, a different way of participating in the world, both individually and with each other. So that’s why we incorporate a therapeutic team, because this is hard to do for one person—to honor and hold all of these narratives. We do see that as that we’re honoring the person, because we are hearing things that, perhaps, they’ve never spoken out loud before. 

We have called it “sacred conversations,” and the term “process ethics,” because whatever somebody utters is sacred to them, and so we want to have the reverence to meet that sacred space where generative conversations can occur. So if I’m thinking back to how this trusting relationship evolves, just being in what we call out of the office, it occurs just like it does if you’ve met somebody in a restaurant. 

You know, [marriage and family therapy pioneer] Lynn Hoffman used to call it “kitchen table talk.” Like you go to a family, and let’s just say that family’s getting along well, and people are talking right and left. There’s no rote ways of doing anything. We don’t replicate one client with another client. We do not replicate one session with that client and think that the next session is going to have even the same themes. It is all client-driven on what they want to see happen.

The therapist’s ego has to be very deflated in favor of what these people want to talk about. Even though I went to college for more than 12 years, I don’t care. Those things don’t matter. What matters is that the person that’s suffering is going to be able to get some type of alleviation. And you never know how that’s going to happen, because the pathway from that comes from the participation of everyone. 

The other thing is that because we are so different, just from the first few minutes engaging with people, automatically there’s this wanting to trust the newness that is there.

Father: Yeah, that’s very true, actually. It is very true. Again, at the beginning, we weren’t that jazzed about it, because we’ve seen so many different psychiatrists, psychologists, and nothing was working. But in the first-second week we really enjoyed it, because honestly, my daughter liked it—and we’ve seen the change in her, the calmness. Of course, maybe it was the horses, definitely the horses had something to do with it.

Biancolli: So you saw a difference in your daughter pretty quickly, then?

Father: Oh, definitely, very quickly, actually, first and second week. Yeah.

Biancolli: That’s remarkable. Was it because, as you said, she really liked the horses—but did she get a sense that she was being heard? She was being heard and seen, was that the difference?

Father: Yes, and she couldn’t wait to go. It was Wednesday that we used to go. She’d put her boots on because, you know, there’s horses there, and she wanted to feed the horse. But it wasn’t an office visit. It was an outside visit. 

I think it was the people. She was being heard, and she really enjoyed it. Yes, she did. I’ve seen it.

Biancolli: So Dr. Swim, I’m curious. You had written about “not-knowing” as a big piece of it, and the humility that’s required. And I realized that this was maybe a significant part of the founding, the origin story, of Now I See A Person Institute. If you could address that a little bit right now—how you came to this understanding of what actually would be healing for people, and what your hopes were from the beginning when you founded the Institute.

Swim: So I always say that I was very fortunate to be at the right place in the right time when I was going through my graduate school. And it was a time where you’ve read books like Psychotherapy: The Hazardous Cure—that people got better on a waiting list than going in for therapy. It was a time where you were critical of research. You know, you were taught to see how research tried to present what they thought they should present even before the research was started. 

So it was a time of—I don’t want to call it enlightenment, but maybe logic. And it was also a time where marriage and family therapy was just starting, it was just budding, and marriage and family therapy never focused on a diagnosis. It focused on the system, and how to help the system. So when I had the opportunity to open up the nonprofit—that was just on a whim, and I started with a couple of horses and my students at the university that I was teaching at. And I remember on the first day that we were there with the horses. I had owned horses all my life, so I had an idea that this was going to go well. 

And it was like night and day. It was night and day. The type of authentic, generative relationships that happen in a naturalistic environment that doesn’t yell “clinician” was massive. 

So that’s what we’ve been doing since 2007. With COVID, we couldn’t go to the horse ranch, unfortunately, and so we started doing what we call “out of the office.” So we would go into people’s backyards, or telehealth, or meet at parks—or anywhere that does not scream pathology-deficiency language.

Biancolli: Dr. Swim, this is going to sound like a really, really basic question. But is the ultimate aim just trying to help people figure out how to be happy? I mean, again, that sounds so basic, but is that ultimately what you’re after?

Swim: Yes, we have to get close enough to understand the type of pain that people are going through so that we can all talk together on how that pain can be alleviated. It’s not from a script of a theoretical treatment plan, you know. I was around when everybody was making the theories, right. And theories were never meant to be followed in steps of “You do A, B, C, and then you go this way, and then you come back.” You know, they were just ideas of what we can do to be helpful with people. 

But what I see, especially with younger students, is that this theory gives them so much self confidence that they can’t see the client because they’re just seeing the theory. So it’s not about bashing clinicians. It’s just the way that they’ve been taught. And I think that what we want to do is offer training to clinicians that helps them to see people, that helps them to be able to listen, because my friend Tom Anderson used to talk about this—listening always involves prejudice.

It’s so easy to have prejudice in our minds. You know, I always talk about how we have to be in the conversation. This is not a field to take lightly. It’s not just to have that 45 minutes, and then get paid by the insurance company and get the next person in. You know, we’re dealing with life-and-death situations here. And so we need to know how to listen. And for me, I know I’m not listening if I have other ideas that are coming up, like, if I’m getting frustrated with somebody. We need to ask ourselves, why am I frustrated? What’s happening? And then we can answer and say, well, maybe I’m worried about them or maybe this or that, and then you can bring that into the conversation. It can be an honest, transparent, genuine process. “I’m worried about you. How are we going to make sure that you’re safe?”

Biancolli: A two-way human conversation that acknowledges the complexity of the other person. That makes so much sense hearing you describe it.

Swim: I just had one more thing that I thought was important. This child was taken away for a year while they were watching TV. They were placed in foster care, and then they were placed in residential treatment. And residential treatment wanted this father to take conservatorship because [they said] this child would never get well, and would be a risk to themselves and to their family. I don’t know if you could talk about that.

Father: It’s so true. That’s what happened. I remember that somebody from DCFS comes. It was about one o’clock, and she knocks on the door. I open up the door. I said, “What are you doing?” She goes, “Well, we heard something.” I said, “Heard what?” And she opens up a case that my eyes were red. 

I’m a father. My daughter has been in a hospital. I just took her out of the hospital, I haven’t slept very well, my eyes are red, and she tells the court system that my eyes were red, maybe I was on medication. Just after that DCFS removed [my daughter] from our house. We cried so much. We didn’t have a chance to argue. And she got taken away, and she was about hour and a half away. 

And after that she went to residential. The court system put her in residential for almost six months. Finally, after two months we had visitation—to go visit her once a week. For almost a year, that’s what we did. It was terrible, terrible, a very terrible time that we had.

Biancolli: So essentially, they took your daughter away because you were so exhausted that you had red eyes?

Father: The psychiatrist told the DCFS that there was an issue at home. At 1 o’clock or 1:30 she came and knocked on the door, just somebody’s banging on the door. It was cold. I remember that night. And supposedly she says in a court filing that my eyes were red, you know. I’m not doing drugs, I don’t do drugs.

But that’s how the system works. Unfortunately, this is our system. That’s how the kids—they get taken away. And a lot of kids, they get lost in the system. We’re some of the lucky people, and I am lucky. I thank God. I thank Dr. Swim. 

Swim: I think it’s important to know that they wanted the parents to take conservatorship of this child.

Father: They did. And we almost thought about it, and I did talk to somebody. And he goes, “Are you sure?” But this is not the right thing. 

Biancolli: Your daughter is doing much better now. You said she’s not on medications. And she’s also in college right now, right?

Father: All together in the last five years she did a whole [180].

Biancolli: So as a father, this whole experience must have been incredibly difficult for you. 

Father: Not just for me. My wife, she suffered a lot. We all suffered, all of us. Not just my daughter, not just my wife or me, all of us suffered. Of course it was terrible, terrible. But we got lucky. We’ve seen the light [at the end of] the tunnel and our fate kept us going, and we’re here now.

Swim: I would like to say that this is something that is not common, but I have been in the field since 1983, and it’s very common: The child is removed from school and put into a situation that is very scary. And then, often—I’m not talking just about this case, but cases in general—they don’t know who to trust, right? Do they trust their parents? Do they trust the clinicians who are very, very convincing about what is happening? And pretty soon, these children are very, very confused. And it’s a journey for the whole family of reuniting, and how that reunification can occur. For us, this is an example of—and I hate to say this, but probably the majority of clients that we do see.

When we first see our clients, we have a lot of hope, because we have seen these types of situations over and over and over again. But they go through a lot of trauma within a system that’s supposed to be a little bit different. We see these families as heroes and heroines, you know, and they’re amazing. They’re wonderful. They’re loving. 

Biancolli: So, a question for both of you: What would you say, or do you say, to other parents to give them hope?

Father: Parents should be a parent first. Spend more time with your kids, listen to them, and if you have rights, don’t fall into the system. Don’t have a big ego as a parent—that “I’m right, you’re just a kid.” No, you have to listen to them. It would help a lot, I think. 

Again, in our situation, we didn’t have that many rights, you know, unfortunately. You got to fight on this one. It’s almost a fighting situation with the system. And don’t give up, no matter what. Don’t just believe the psychiatrist. And probably, if my daughter got taken away when she was 13, I really doubt that we could have got her back.

But she was going to be 18 when they put her in a facility at the end. They had to release it. The court had to release it. They go, “Okay, she’s going to be 18 in three months. Okay, you have to do this, this, and this.” If she was much younger, we wouldn’t be this lucky, probably. I really mean it, bottom of my heart. But again, don’t lose your faith. That’s it.

Swim: So this is the type of work we’ve been doing for 40 years, a long time. I age myself every time I say that. And the majority of our clients transcend. They heal. Their children come back. I’d say most of our clients do not continue on medication. Our clients do not continue to be hospitalized. Our clients, they’re redesigning their lives in the way that they want to redesign their lives, and we don’t see ourselves as therapists or psychologists or clinicians that we have the right to do that redesigning. This is for the families to do.

I know especially for the people involved in the story that we’ve been talking about today, it’s a wonderful outcome. Everybody’s super happy. We get to hear about college graduations and amazing, wonderful things. And things can turn around so incredibly rapidly as well. And so I guess my hope is that people do not lose hope.

Biancolli: That’s terrific.

Our guests today were Susan Swim, executive director of the Now I See A Person Institute and a father whose daughter found help and healing there. You can find out more about the Institute at www.nowiseeaperson.com. 

Thank you so much the both of you for this conversation. It was really powerful.

Father: Thank you.

Swim: Thank you.

The post ‘Sacred Conversations’: A Talk with Susan Swim and a Father Whose Daughter Found Healing appeared first on Mad In America.

I’ll never forget standing beside my sister Lucy as she was strapped to a gurney during a midnight admission to an E.R. in Cambridge, Mass.—one of 13 or 14 hospitalizations, I’ve forgotten which—and hearing her try to persuade hospital workers to release her.

She was profoundly articulate and compelling as she made her case, but by then she’d been diagnosed as borderline, which, of course, meant that anything she expressed in her own defense would be discounted as manipulative and disordered. 

I don’t remember what I said, exactly. What I wanted to do, then and always, was scream at everyone in screaming distance: Don’t you realize?! This woman is the sweetest, most caring, most extraordinary soul you’ll ever meet in your life! She’s funny as hell! She’s a pianist! She plays Beethoven like she knew him! Treat her with compassion! Acknowledge her humanity! Listen to what she says! 

This was back in the late 1980s, shortly after I dropped everything and went to live with her. I’ll never stop dwelling on that moment and the system that failed my sister. I’ll never stop trying to process her suicide in 1992, just as I’ll never stop working to process my husband’s in 2011. This is the nature of grief following suicide: It never truly resolves. Those of us left behind spend the rest of our own lives trying to understand why our loved ones’ were cut short—and what might have helped them survive. We envision alternate timelines in which they healed, recovered, perhaps blossomed, even thrived. 

Right now I’m finishing a novel in which I try to bring Lucy back from the dead. In it, I persuade an eccentric Harvard neuroscientist to put me into a coma, and I zip up to heaven on a quest to drag her home. It’s a bizarre little book, probably unpublishable. But I don’t care. It’s been a way for me to honor Lucy, visit her, see her in a new light, understand her better. It’s been a prod and a platform for questioning all that happened to her and imagining in a different reality, a different realm, one where she isn’t drugged and harmed, one where she isn’t hospitalized, one where she brings joy to herself and others through music and so much else. 

As it was, she couldn’t. Near the end of her life she couldn’t concentrate. She couldn’t play the piano. She abandoned her dreams of becoming a concert soloist. She couldn’t work. She couldn’t live with hope. By the close of her ordeal she couldn’t make it through a day, or barely a moment, without wanting to kill herself. 

From the beginning, she also couldn’t get the system to care about her. Once she started being hospitalized? Labeled as This, That, and The Other Thing, drugged on X, Y, and Z? Forget it. Her nutty sense of humor, her profound musicianship, her fondness for tea and chocolate, her kindness toward her goofball younger sister: None of that mattered, because she didn’t matter. Not to those who were charged with helping her. Not the way she deserved. 

The long arc of Lucy’s story began at birth, when forceps squeezed her temporal lobes and caused a form of epilepsy that remained undiagnosed for decades but prompted hallucinations and other extreme states from a very young age. Later on she recalled watching the grass wiggle without a breeze. At Harvard, during her conversion to Catholicism, she saw and spoke with God. But at the time, she had no idea. I certainly didn’t, as she hadn’t told anyone about her childhood experiences. Had she, perhaps her temporal lobe epilepsy might have been identified as the cause—and perhaps her course through healthcare might have taken a different route. 

Instead, she was slapped with one psychiatric label after another. BPD. Major depression. Antisocial personality disorder. Panic disorder. Histrionic disorder. Manic-depressive (now known as bipolar) disorder. Obsessive-compulsive disorder. The list goes on. 

And even after they identified her TLE, she kept being diagnosed with additional disorders and kept being prescribed all sorts of drugs, including some to combat the pileup of side effects. Beyond anticonvulsants, the long paper trail over the course of her treatment included three dozen or so prescriptions. Tricyclics. SSRI’s. At least one antipsychotic. Several sedatives, including Xanax, to which she quickly became addicted. Oh, and lithium. Also Cogentin, a Parkinson’s drug. Plus Cylcert, a stimulant, which came with a risk of liver damage. You name it, she was on it at some point, and I’m only exaggerating slightly. 

“You’re on so many drugs, you could die of organ failure,” one of her doctors told her. I didn’t like this guy. I didn’t see how anything he did helped my beloved sister. Instead, whenever some new drug dropped, he whipped out his pad and wrote her a script. 

This is or a different doctor, I can’t remember who, pushed her to have electroconvulsive therapy at McLean Hospital outside Boston—after she’d been diagnosed with TLE. There they rolled her into an oddly sunny room (or so my memory tells me) and plugged her with electrodes. I wanted to stay by her side as they zapped her brain, prompting a seizure, but I wasn’t allowed. Of course I wasn’t. 

None of this made any sense to me. Not the ECT, which rocketed her to an artificial high for a couple weeks before she crashed and burned, complete with memory loss. Not the multitudinous diagnoses. Not the nonstop cascade of drugs, then more drugs, then more. Yes, I knew Lucy was suicidal. We talked about it frequently—her pain, my fears. She made one previous attempt before her final one, later writing an autobiographical account of waking from her three-day coma that I’ve been fictionalizing and incorporating into my novel. 

But I also knew that she hadn’t been actively, acutely, horrifically, continuously suicidal until after she’d started seeing a psychiatrist. Until after she started being medicated. Before that she’d been struggling, yes, but she could make music. She could live without trying to die. In retrospect, after all that I’ve learned in my years reading and working for Mad in America, I wonder about the side effects. I recall some of the agonies Lucy described to me as facets of her TLE and “mental illness”—the suicidal ideation, the manic episodes when she bolted into the night, the “depersonalization,” the sensation of ants crawling up and down her body—and I wonder, now, whether she was actually suffering from akathisia and other iatrogenic harms of the very drugs she was put on and taken off, often abruptly. Perhaps she suffered from withdrawal, too. 

But we had no way of knowing, back then. While psychiatric survivors had started speaking out in the 1970s, there was no internet. There were no blackbox warnings about suicide risks, and the Hearing Voices movement was just bubbling up. There were no universally accessible resources and information on alternate approaches. Had Lucy met someone in person, some clinician or peer, who questioned the existing paradigm and offered another way, that might have changed everything. But she didn’t. 

All of which prompts an inevitable and endless rash of what ifs. What if my sister hadn’t been misdiagnosed repeatedly, her temporal lobe epilepsy unrecognized until far too late? What if she hadn’t gone on a satchel of psychiatric drugs, suffering harms no one acknowledged back then? What if she’d gone on them but recognized some of her symptoms as side effects? What if she’d encountered some other form of support? 

Maybe, had Lucy lived just a little longer or was born at a later time, she might have found a way. In my bonkers novel, I chew on all of this: Not just the what ifs but the mights. In one alternate timeline I envision on my jaunt to heaven, she might never have been misdiagnosed and overmedicated. She might never have been drugged and damaged. She might have been treated with utmost empathy and care. In another timeline, she might have weaned herself off all those drugs, recovered from all their harms, and learned to live with her TLE and hallucinations. Listen to them. Even grow with them. 

Then she might have fallen in love, gotten married, had kids, and been a fun, wacky aunt to her sister’s brood. She might have resumed playing the piano. She might have performed Beethoven’s “Waldstein” sonata before rapt audiences who gulped down her insights, who bathed in her warmth. Visiting her in the afterlife in my book, I can hear the music coming from the old Mason & Hamlin in our childhood home. I can watch her at the keyboard, swaying, pressing, leaning into the power and poetry with a heft and insight I haven’t seen or heard in 35 years. And I can picture, as I do, some miraculous split in the space-time continuum that allows her to come back. Make music. Be with me. Be well.

I know things aren’t exactly perfect in mental healthcare, these days. I know psychiatric treatment continues to harm countless people. Looking at the critical psychiatry movement and all the personal stories being told on MIA, I know that Lucy’s saga of drugs, hospitalization, silencing, and dehumanization is still too common. Consider the abuse of people in treatment, the loved ones trying to help, the surge in antidepressant usage among youth (most recently, in Australia and New Zealand), or the grieving parents calling for more attention to the risks of suicidality (in the UK). 

They speak out because they have to—because, once again, grief following suicide is a forever proposition. There’s no getting over it. There’s no making sense of it, not really. There’s only the constant urge to tell the stories of our treasured ones who tried to stick around, who tried to make a go of things, but couldn’t find any respite or recovery in the prevailing system. Not then. Not now. Not all these decades later. 

Maybe they didn’t matter to that system. But they matter to us, and always will. And the system needs to change.

In some other reality, Lucy would be calling for it.

The post My Sister Lucy’s Death and Life: Picturing an Alternate Timeline of Recovery appeared first on Mad In America.

He’s the author of eight books, most recently on antidepressant withdrawal, and the founder of the website PsychiatryRedefined.org—where he works to educate his colleagues/professionals on the science and practice of functional, integrative, and metabolic psychiatry.

Greenblatt serves as Chief Medical Officer and Vice President of Medical Services at Walden Behavioral Care, which is based in Massachusetts. He teaches at the Tufts University School of Medicine and the Dartmouth College School of Medicine.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: Dr. Greenblatt, welcome. Glad to have you here today.

James Greenblatt: Thank you, Amy. It’s good to be with you.

Biancolli: I have a lot of questions today, because you’ve done so much interesting work. But for a start, for our listeners, could you define functional medicine and integrative psychiatry? And how do those approaches differ from conventional psychiatry? What do people need to know going into this conversation about what you do and how it differs?

Greenblatt: Good start. We can have three buckets here. Conventional psychiatry, we’re all quite aware of, is pretty much a symptomatic-based polypharmacy treatment model. We have one tool and it’s a medicine for a symptom. The second, third and fourth medicine, I think we’re all aware of that, and the limitations of that. We throw in psychotherapy, but the model is medications. 

Integrative medicine, which has gained steam over the last 30 years, includes the terms like mindfulness and yoga and lifestyle and exercise, and diet. All these terms that the consumers had to push forward and finally have been embraced by our medical establishment—and that’s great news. We have mindfulness trainings at Harvard and Stanford, and we have lifestyle fellowships for doctors, but in my 30 years of practice that hasn’t been enough to make a dent in—I believe—the tragedy of our current treatment model in psychiatry. That’s where the term functional medicine comes in. 

Functional medicine looks at the root cause. It looks at that connection between genetic vulnerability and environmental stresses or deficiencies or toxins, and it’s based on objective testing. We look for nutritional deficiencies, we look at the gut, we look at genes. So if we add our traditional model, if we add an integrative model with a functional model, I believe, in my experience, it’s a recipe for dramatically improved outcomes.

Biancolli: You used a term just now, the root cause. So, could you describe a little bit what you do to determine that? Because, of course, what’s missing from psychiatric diagnosis and treatment is the test. In the mainstream narrative, everybody is always comparing psychiatric disorders with, say, someone with diabetes, but with diabetes you get a blood test to determine that you need insulin. Is there something specific in your modalities, in what you do, that, again, differs from the original approach? How do you determine that root cause that you’re talking about?

Greenblatt: This is both the exciting part and the challenging part, because the work-up that we would do on a patient in a functional psychiatry approach might look at 250 biomarkers. And the list is very long, but we could just take B12 deficiency [as an example]. How many psychiatrists are routinely looking at B12 deficiency? And we know it contributes to depression, anxiety. We’ve seen it contribute to psychosis and a whole host of other mental health problems. 

We could do Vitamin D deficiency. Some of the most common tests that we look at is actually celiac disease. As a root cause, I could tell you over the years, as a child and adolescent psychiatrist, how many kids have walked into the office with everything from anxiety to anorexia nervosa—and that when celiac disease was diagnosed and treated, the nutritional deficiencies repleted, those psychiatric symptoms disappeared.

So it’s not one test. We start all of our trainings with teaching psychiatrists: We have a neck. What happens in the body affects our brain.

Biancolli: The interesting thing to me, too, is that you’re talking about genetic causes or the idea of something being an inheritable tendency, an inheritable predisposition to some nutritional deficiency. Again, how is that different from the biomedical model, which says that “chemical imbalance” that you have—there is a genetic cause for that, and you could inherit depression from your parents, your grandparents?

Of course, I’m sure you’re aware that Mad in America trains a very critical lens on that view, that biomedical so-called “chemical imbalance” view that’s regarded as inheritable. And once again, I’m just really curious to hear: What is the difference? That’s one thing that, in general, really interests me about your work—those differences between what you do and what usual psychiatric practice does.

Greenblatt: Sure. The lens that the Mad in America and Bob Whitaker have been focused on is helping everyone understand the limitations of such a simple model. So’ our model is not [that] depression is genetic. Our model is [that] for individual A, the genetics has to do with their metabolism of a nutrient called folates. We look at a gene that metabolizes folate. For the next person, the genetics is how they absorb Vitamin B12. The next person happens to be the autoimmune disorder, celiac disease. 

So there’s powerful genetics, and we can’t deny that, but our traditional approach is just depressed: antidepressant. If you’re sad, we’ll give you an anti-sad pill, and Mad in America has exposed the profound limitations around that model. We just expanded a deeper dive into why, what’s going on, and it’s different for everyone suffering the same illness. There are certainly similarities, and that’s part of our teaching, but the core concept in functional medicine is biochemical individuality. Everyone is different, and we have to appreciate that—and look for it with objective tests. 

Biancolli: Is this part of the whole-body approach? Instead of taking a close look at one piece of a person’s biology or mind or emotions, or social setting, or history, or genetic history, family history—instead of just looking at one piece of that, looking at the whole picture? Is that part of it?

Greenblatt: That’s it, Amy. Pretty much, if we can do a better job of taking three-generation family histories, looking at all the parts of what makes us human—from relationships to our diet—absolutely, we would have better outcomes for our kids and adults with mental illness.

Biancolli: Just hearing you say that, it just seems so obvious. Whenever I have a conversation like this with somebody or I read an article making a similar argument—from a human standpoint it just seems really obvious, or it should be.

Greenblatt: It’s so obvious that for me, sometimes, that is both the [source of] optimism and the excitement, but also the anger and rage. Some of this information has been embedded in our research for 30 years, and our medical community and our therapeutic community have just ignored it. Or, what’s happening now, which is even more frustrating, we’re acknowledging it and not doing anything about it. 

Like sleep—sleep and adolescents. We know sleep increases risk for depression and suicide, and we know kids aren’t sleeping enough, and we know the mechanisms of what happens in terms of all these inflammatory markers. So we know all this stuff, and everybody admits it, but we’re not integrated into how we’re treating these kids in our emergency rooms after the second suicide attempt. But the information and science is there.

Biancolli: How did you come to this different take on psychiatry? If you could tell us a little bit about your backstory. From what I’ve read, you started out 35 years ago or so in a conventional child psychiatry practice. Is that right?

Greenblatt: Yes, it goes back a little further, because I walked into medical school thinking I was going to cure the world with brown rice and kale. I originally was interested in nutrition and mental health. Nine years later, medical school in child psychiatry, I came out as a child psychiatrist. The model in psycho-pharm and psycho-therapy, and quickly in private practice I realized that the meds were Band-Aids. Sometimes they helped, sometimes they didn’t, and I really got back to my roots. I’ve been studying and teaching other doctors this functional medicine model, which, as you said, is obvious and not that complicated.

Biancolli: I’m just curious about your a-ha moment. Did you believe in psychiatric drugs as treatment for disease at some point, and then was there one case, one instance—or was it just a wave of kids that you saw, and you just looked at them and thought, “This isn’t working”? What was your turning point, your epiphany, if there was one?

Greenblatt: It really wasn’t an epiphany, because I still prescribe medications—and this is what I think has been hard and polarizing for communities that clearly have tried to criticize or improve our psychiatric model. I’m desperate for that improvement, but there is a role for psychiatric medications—if you’ve ever seen someone who is psychotic or manic, or watching an ADHD child who can’t function, and then functions well. So there is a role for medicine, and I still believe that, but it’s certainly over-prescribed, over-used, and no one is looking for the root cause. 

So there were patients that I would see where they never have to take a medication, or my job was just helping them get off medications. There are other patients I’ve seen over the years, where medications have truly been life-saving. It just really is helping clinicians understand that difference, and our traditional model is really just focused on that one direction.

Biancolli: This was one of my questions – that you’re not anti-medicine. From your perspective, it depends on the circumstances and the individual patient?

Greenblatt: Absolutely. I’ve been treating eating disorders on an in-patient level of care, where they are all malnourished. So, I get to talk about nutrition, and malnutrition, and prescribe supplements like zinc and fatty acids. 

But in the traditional psychiatric community, I’ve admitted patients who are suicidal, manic, psychotic, and those patients can benefit from medications. Where I differ with my colleagues is they usually over-medicated, medicated too long, and the side effects are just ignored. So yes, I believe there is a place for psychiatric medications—used judiciously,  short-term, as we look at the root cause of the functional medicine model. 

Biancolli: As a psychiatrist you question psychiatry but still use the drugs, as you were saying, for some patients who get short-term benefits: Since you’re focused in most of your work on finding those root causes—not just the biological factors but all the causes—how is it different when you’re prescribing drugs that people don’t really understand when they do work, why they work? And the science is so unclear? 

Greenblatt: The important question is it has to be discussed, and I think that I’m 100%—no, we’ll say 90%—in agreement with the Mad in America narrative, the incredible writing and the articulate stories and questioning our current model. What has been frustrating for some of us in the functional integrative sphere is that on Mad in America, the narrative hasn’t offered solutions—and that’s what our focus has been on. How can we help these individuals who are emotionally, physically, psychologically, spiritually tormented due to their mental illness? 

My job as a child psychiatrist and adult psychiatrist—as a human being—is to offer the tools. One, first do no harm, and two, anything to be a benefit. So I’m looking to support a patient and a family, and I think the tools of integrative and functional medicine just offer a tremendous scientific-backed ability to look at it. Whether it’s Vitamin D [levels] in our minority populations that are very low, or celiac disease, or long-COVID—whatever the process is, we are investigating that, and we are going to treat it. 

In the interim, if I need a medication for a week or two or a month to support that patient’s journey towards health, then I believe there are some medicines that could be of benefit.

Biancolli: So, correct me if this is the wrong metaphor or analogy, but it’s like putting a cast on someone with a broken limb for some weeks or months so they can move forward and go through PT, eventually, if they’ve had an injury—or is that too strained an analogy?

Greenblatt: No, that makes sense. Let me give you two examples. One is a 12-year-old girl who’s been refusing to eat, has been in the medical hospital, the children’s hospital here, locally, being fed by an NG [nasogastric] tube. And gets to our eating disorder facility not eating and starts to get malnourished. And I give this child—and I probably could give you a thousand examples over 20 years—a tiny dose of a known medication. We’re talking about 1.25 mg of Zyprexa, [the brand name of] Olanzapine, an antipsychotic. 

And I’ve seen hundreds, if not thousands, of kids lose their rigidity and their delusions that are preventing them from eating—and they start eating. And we taper that medication, sometimes in weeks, sometimes in a month. That Olanzapine was lifesaving, and anorexia nervosa is the most lethal illness in all of psychiatry. So we have to do something. 

The other example I always use was a series of articles in The New York Times a number of years ago on mental illness in West Africa. So, at the time, if you were delusional you would get chained to a tree. Your family would bring you a mat and they would put shackles on your leg, and they would bring you food. [One] story talked about a visiting nurse giving this woman an injection of Haldol, long-acting Haldol injection, and I think it was a 19-year-old girl. It cured her delusions. She was unshackled from her tree, she went home to her family and got a monthly injection of Haldol. So, how can anybody say that that is an evil, dangerous medication?

Now, in our in-patient facilities, absolutely, our antipsychotics are over-used—and they cause side effects and diabetes, and weight gain, and it is poorly monitored. It is a disaster.

Biancolli: Are we talking about harm reduction in two senses? I haven’t asked you much so far about your work with Psychiatry Redefined, but it really intrigued me when I went to your website and saw your efforts to educate your colleagues, because you’re trying to get them to adjust their practices—and I wondered whether you have a harm-reduction mindset, actually, about the practice of psychiatry, getting people to adjust their thinking a little bit, change their practices a little bit, and whether or not that’s actually an equivalent of what you’re describing right now in terms of prescribing small doses of psychiatric drugs for patients who need it in some moment of crisis. Are you just trying to make things a little better? Is that the case?

Greenblatt: No. I think I’m going for the home run. The Psychiatry Redefined website has no medication trainings. It is 100% focused on an integrative and functional model. Again, I don’t know how many people have seen a 9-year-old hearing voices and seeing things, and unable to function, but I’m confident that rather than [using] multiple antipsychotics, that we can find the cause. And we’ve seen it. I’ve seen undetectable nutrient levels and serious gut problems that we know can create psychosis. No, Psychiatry Redefined is focused on a completely new model, looking for the home run, looking for the root cause—and if we can’t find it, we do understand. There are some [cases], certainly in my hospital work, that medicine is used, but Psychiatry Redefined is really only focused on this functional model.

Being in the real traditional world of psychiatry, it’s the only way I’m going to embrace my colleagues. I certainly think there is a lot we can just throw away and start over. It’s just not going to happen. So, absolutely, for my traditional work at the in-patient hospital for serious mental illness, there is a concept of harm reduction early on in treatment. But what keeps me going in this field is, as we train more doctors, they send us cases of complete remission of major psychiatric illness—and that doesn’t happen with the medication model, which is just symptomatic-based Band-Aid. 

Biancolli: You truly are talking about healing people—not just, “Okay, we’re going to write this prescription, and you’re going to be on it the rest of your life, because there is no cure for whatever diagnosis you have.” You’re saying, “Yes, we can heal from these things.” Can you give an example of that?

Greenblatt: Stanford now has a clinic called Metabolic Psychiatry, where they are looking at ketogenic diet, dramatically changing the neurochemistry of the body. With ketones fueling the brain, we’ve seen—and there are case studies—the reversal of psychosis, binge-eating disorder, depression, and helping people taper off medicines.

So there is very good research, actually, around the globe on ketogenic diet and looking at insulin resistance. We’ve seen infections, strep infections or tick-borne disease like Lyme, cause neuropsychiatric symptoms. Some of the most dramatic cases I worked with is something that’s ignored by the integrative and traditional community—is looking at a simple marker like cholesterol. And there is dramatic, 30-plus-year research understanding the role of very low cholesterol with suicide risk and depression. Very low cholesterol is considered under 130 total cholesterol.

So we’ve had kids admitted to an in-patient psychiatric unit for multiple suicide attempts. Usually, the low-cholesterol kids are violent. Aggressive attempts. And total cholesterols of 119. So, the brain doesn’t work well. By treating this, we believe, as a genetic, physiological difference unrelated to dietary intake, we’ve been able to stop these chronic depression and suicidal thoughts. 

Again, I mentioned hundreds of biomarkers that we can train our doctors to look at to determine the root cause. 

Biancolli: You’re saying there is actually a lot of science that shows the dangers of having very, very low cholesterol, but people aren’t aware of that. This is, again, something that Mad in America grapples with—that the science shows, for instance, the harms and deficiencies of say, SSRIs, all the side effects, the suicidality and all of that associated with SSRIs and other psychiatric drugs. But then most people aren’t aware of that—because there’s what science says, what research says, and then there’s what the mainstream narrative says. And I realize you’re more concerned with altering, expanding, adjusting the narrative for your colleagues, but how do you change the wider narrative? Is it possible?

Greenblatt: Absolutely. I mean, the last book we wrote is the textbook on antidepressant withdrawal, and all of our presentations are on suicidal ideation on SSRIs. What I have found working with our patients with eating disorders: When the SSRI suicide risk came out, the Black Box warning, I was practicing adolescent psychiatry in a hospital, and I never saw a suicidal ideation—it didn’t make sense to me. And then, 20 years ago, I shifted to this eating disorder in-patient program, and I started seeing a lot of kids started on an SSRI—intense suicidal ideation. So I started understanding the connection between malnutrition and this side effect. Why do some individuals get the suicidal ideation, and some individuals don’t? To me, that is one of the most profound questions. Why do some individuals have horrible withdrawal, and some don’t? 

So, if we stop focusing on the med and start looking at the individual, the individual’s biochemistry, we can answer some of those questions. I clearly want to change the traditional narrative of informed consent around many of these medications, but I believe some of them can be used safely. I’m less of a fan of some of the SSRIs than some of the other medications in these unique situations.

Biancolli: So you’re saying some people might have a genetic predisposition for withdrawal or side effects, and the informed consent would mean being told you might have this reaction? 

Greenblatt: I’m not sure it’s genetic as much as—I could predict those individuals that are going to have severe withdrawal by looking at these biomarkers. These are the individuals that have profound nutritional or metabolic problems. So we can predict who’s going to have withdrawal problems, and that’s why I wrote the book. 

We treat severe B12 deficiency, genetic variants of folate. If we treat all that first and then begin a slow taper of these medications, they often don’t have these withdrawal symptoms.

Biancolli: So, you’re saying whatever the root cause—the root cause in the sense of nutritional deficiency, or something else that’s going on—you’re not saying there’s necessarily a genetic cause for it. It’s just that people are responding a certain way to a drug. It can be largely related to these nutritional deficiencies. Is that correct?

Greenblatt: Yes. I mean, know these medications disturb serotonin metabolism. We know from animal studies, people end up having lower levels of serotonin over time. So a very major disruption in neurophysiology—and then you pull that medicine away, things wreak havoc, and horrific stories about antidepressant withdrawal. But let’s just take that celiac patient with malabsorption of nutrients like zinc and tryptophan and folate, and vitamin D. They didn’t know they had celiac. They could never stop their antidepressant without severe symptoms.

If we treat the celiac, if we replete those nutrients, they can safely taper off the medications without withdrawal.

Biancolli: So that’s the first approach: looking at it and saying why, or doing the test that you’re describing. And saying, “Do you have these deficiencies, do you have these causes that can be addressed?” before prescribing anything else. 

Greenblatt: Yes. I find it silly, but lots of people—antipsychiatry people or even psychiatrists—everyone had this theory, OK, taper five percent a week or 20%. Everyone has these programs, and none of it makes any medical sense. So someone walks into my office who’s tried to taper and has had withdrawal, and brain zaps, and dysfunctional, I would tell them do not taper your medicine for three months. Let’s do these tests, let’s replete the nutrients, as you described, before we begin to taper.

Biancolli: Okay. So, even the super-gradual tapers that a lot of people use—they’ll be very, very careful and cautious and it might even take them a couple of years. You’re saying, instead of doing that, take that person and figure out what else is going on.

Greenblatt: If you’ve been on SSRIs or benzos for many, many years, it is still slow, but we can dramatically minimize these withdrawal symptoms. The counting-the-beads and the suffering that people go through is not necessary.

Biancolli: There are so many people who don’t have access to the care that you’re describing. What can be done? Do you have a sense of wanting to change the system entirely, so that access to alternate therapies and modalities and approaches would be easier for people?

So many people wind up on antidepressants after a 10- or 15-minute meeting with a GP, and it’s easier for the GP to just write out a script. It’s more efficient from everybody’s standpoint. So, how do you correct that? How do you reach people who are suffering, and how are they going to even know that they might have something else going on that makes them predisposed to withdrawal?

Greenblatt: Well, that’s why we’re talking. And it’s going to take communities like Mad in America, like Psychiatry Redefined, and many others. So I don’t have the answer. I think for me and Psychiatry Redefined, I thought education would be a path. I used to give some of these presentations. I started in 1990, and I didn’t have as much research. It was usually clinical experience or people in my field, but now, in 2023, we have the research—so nobody can argue with some of the low cholesterol data, or the Vitamin D data. So it’s a little easier with our colleagues now, but it’s going to take the articulate thinking and writing of communities like Mad in America and our traditional community in mental health to make those changes.

I am optimistic. I tend to be optimistic. I think some of the younger psychiatrists and psych nurse-practitioners, they are asking for this information. Why? Because their patients are asking for it. Just like the health and fitness movement 40 years ago, it was the consumer that started pushing that—and now, there are wellness plans. I believe now the consumer is a little frustrated. The patient, if you will, with this polypharmacy guinea-pig approach. They are looking for alternatives. They are coming in to the prescriber and saying, “Is there anything else you can do besides the medicine?” So, there is a movement of people looking. We know the supplement industry and the health industry is booming. It’s a little disjointed, and we need our medical colleagues to jump in and lead it.

Biancolli: In this interview, you’ve emphasized the science, the science, the science—looking at these biomarkers and everything. The DSM [Diagnostic and Statistical Manual] is basically a construct. So, can that change? Does the DSM serve a potentially helpful purpose in some circumstances? And what would you, how would you—if you had total power over the DSM, how would you change it? Or would you get rid of it? As a psychiatrist, what would you do?

Greenblatt: I’d probably change my mind every two minutes, but my first thought is it’s completely useless, right? It’s a list of symptoms that are somewhat meaningless. That’s my gut thought: It ‘s really derailed us from looking at etiology and underlying cause. In my world, I have 10, if not 20, unique causes for that individual suffering with a checklist of major depressive disorder.

So I’d like to throw it out the window, but there is some role in being able to communicate to colleagues, do research, and maybe help a patient understand, “You are struggling with major depressive disorder.” But the truth is it’s been a useless concept of just symptoms—and that’s not what functional medicine is. We’re looking at underlying cause.

Biancolli: In your vision of psychiatry redefined, what are your hopes in terms of how practice changes? What’s been the response from your colleagues, and how does that feed into how you feel about your mission to redefine psychiatry?

Greenblatt: I would say 30 years ago, I was tiptoeing around. People would come to me as the vitamin doctor, and then I ended up working with eating disorders, where it was easy to think and talk and give grand rounds on nutritional deficiencies for our eating disorder patients. But in the past five years, as the research has exploded from the gut microbiome to Vitamin D, nobody can argue with the science. So there is not a lot of push-back, it’s just laziness in learning a new model. And it’s also trying to break some of the hold on a traditional psycho-pharm model.

But when you think about it, it’s common sense. We’re not looking to disrupt the infrastructure. We’re just looking to enhance the model. You said, what’s the fantasy? The fantasy is every child or adolescent coming to a physician with psychiatric problems, whether it’s your PCP or the child psychiatrist, they get a battery of tests. We’re going to rule out celiac disease. We’re going to rule out PANDAS [pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections]. We’re going to rule out an infection that could be causing your OCD. I mean, it’s tragic that people wait five or 10 years before someone remembers you had a tick bite, and all your symptoms started after the tick bite.

Biancolli: We’re so used to thinking about a physical symptom or a physical deficit as being in a box. Like it’s separate and distinct from what we’re going through mentally or emotionally. Is part of it the challenge of thinking in that more integrative, holistic approach where you literally integrate the pieces of ourselves, and how we think about ourselves, and how our own conception of what it means to function? 

Greenblatt: I think so. Certainly, for optimal brain health, I think what has helped is the research on the gut microbiome. We’re all obsessed with our gut and bowels. Over the course of 10 years, the research has exploded. So now people can appreciate that what’s happening in your gut can affect brain function. We have that science. So then, maybe we can appreciate, what’s happening in your liver, and your kidney, and your thyroid: Those all could also affect brain function and depression. Iron deficiency, anemia in adolescence, might cause depression. The list is endless, but I think it is a mindset. It is thinking holistically, and remembering we have a neck.

I don’t want to oversimplify the model. I just want to bring up one point—that this functional model, looking at nutritional deficiency in particular, it just optimizes someone’s brain health, if you will. It doesn’t dismiss [something] which is just so powerful and overwhelming in our field, [which] is trauma. It doesn’t dismiss the emotional abuse that is just rampant in our kids and adults. I believe the nutritional optimization just enables people to participate better in psychotherapy, in their healing journey, if they have suffered from trauma, or tragedies, or losses. 

So it is not that same, single-minded biological approach that our psycho-pharm model has disrupted, it’s just an adjunct. We still do a careful history. We still understand who we’re talking about, their relationships, their connections, and their life, and their story. And maybe medication is needed, maybe it isn’t. Oftentimes, if we can get the kids young enough, it’s not needed.

But the Zoloft, the 50 mg of Zoloft for that depressed adolescent, it’s just a Band-Aid that might or might not help. We know it has helped some people, and we know it causes side effects in some people, but it’s just that symptomatic potential Band-Aid—without looking at some of those nutritional deficiencies. If Zoloft did help, it would be very challenging to stop the medication. So the other problem is we’re teaching psychiatrists, and doctors, and nurse-practitioners how to prescribe medicines, but nobody is teaching them how to stop medicines.

I think our goal is just to educate—and now we have the science and the common sense, and we have consumers that are really not going to tolerate just the symptomatic-based model any longer.

Biancolli: Do you have a message of hope that you convey to patients, to families, to parents of kids with eating disorders or kids with ADHD? Do you have a message of hope that you convey to them when they come to you in distress? Or, do you have a message of hope for our listeners? What would you say?

Greenblatt: Yes. I think it comes in a couple of different forms. One: Clearly, my message is optimistic and hopeful. And I think framing this as biologically based—we’re going to test and look at you, the individual who is struggling—is helpful. Because once we take away the blame—if it’s a child or an adult, the self-blame, the guilt and the shame? That becomes devastating. 

So we frame it as a biologically based illness. It’s nobody’s fault. We’re going to look carefully, and then part of that hope is helping people just understand that the human body is based on its ability to change. Our cells turn over. Some cells turn over every three days, every seven days. With treatment, we can help you change—and I think that is the message of hope. Sometimes it takes extra nutritional support, sometimes it takes looking at some of these environmental factors. Some of it looks at the immune system. It’s at times complicated, but there is a model of healing. 

So it is clearly a model of hope, because we can use words like recovery and remission in this model. Our current psychiatric model, we don’t talk about recovery and remission.

Biancolli: Dr. Greenblatt, thank you so much. I so appreciate you taking the time to speak with me today.

Greenblatt: Thank you, Amy, and I appreciate all the work Mad in America has done over the years and is doing, and if we can work together with finding solutions, there is a lot more we can do

Biancolli: Our guest today has been author and functional psychiatrist James Greenblatt. For more on his books and his work with functional psychiatry, integrative medicine, and nutrition, see JamesGreenblattMD.com, and PsychiatryRedefined.org. 

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post ‘We Have a Neck’: Psychiatrist James Greenblatt on The Links Between Body and Brain appeared first on Mad In America.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Karin Jervert: I’m here today with Mia Berrin, the front woman of the American indie rock/grunge band from Brooklyn, Pom Pom Squad. The group, with Shelby Keller drums and Alex Mercuri guitar, cut their teeth playing packed Brooklyn apartments, but they quickly graduated to packed Brooklyn venues, alongside artists like Soccer Mommy, Adult Mom, and Pronoun. The band’s latest album is Death of a Cheerleader. We’re really happy to have her on and talk to her today. Also, Mia, so welcome. So glad to have you here.

Mia Berrin: Thank you so much. I’m glad to be here.

Amy Biancolli: Mia, I’m just curious to hear how you would describe the stressors of the music industry. Could you speak to that a little bit?

Berrin: I can absolutely relate to that. I’ve been a full-time musician for the past two and a half years, which has been a huge lifestyle change. Before that I was a student and I was doing day jobs. Working retail requires different skill sets than working in the music industry. In terms of the music industry, I quit my day job to go on tour, and most of my job since then has been touring. I’m back home right now for the first time. It’s the longest consecutive amount of time I’ve been home in two years, which has been three months.

For me, being bipolar, something like getting sleep is really important, taking my medication at the same time, making sure I’m eating properly, making sure that I’m drinking enough water, just doing all of the things that your body’s baseline needs in general, but also that your body needs as a baseline to maintain your mental stability and keep you seeing clearly. The way that the touring industry works, it’s just not conducive to anyone’s physical health really. Money’s tight, sleep is few and far between, options for food are usually not great. You’re not very active during the day, you’re usually on a long drive.

For me, because I’m still a smaller artist, we’re usually touring in vans versus sometimes we’re chasing after an artist touring on a bus, and while those artists can sleep on the bus, and they have a driver, and they can get to the venue early and have a little bit more time to relax just for the sake of saving money. Honestly, it’s just not realistic for us to expect to do something like sleep through the night while we’re on a tour.

Biancolli: That makes a lot of sense. I mean, one thing I’m also curious about is those stressors that you describe, and their effects on physical and mental health—is that different from how the music itself affects you? From how performing affects you? And if so, how would you describe it? What does music—performing with your band—do for you?

Berrin: That’s a good question. I’m thinking about a specific tour, we went on, we did a headline tour last year, around exactly a year ago, where I was just having a really difficult time, mentally, behind the scenes of that tour was really difficult for me. But the shows really kept me going. I think doing a headline is different than doing any other kind of tour because, in my experience, I would get to go out every night and see people who loved my music and were more familiar with me and familiar with my songs. They were singing my songs back to me, and it gave me a completely new perspective on the music that I had made because when I’m writing, I’m usually writing for me.

I think people—I’ve been hearing this phrase a lot because I’m writing my second record right now—but I’ve heard people say you have your whole life to write your first record, and only a year to write your second. For me, those songs have been a culmination of many years of my life, and many different places that I’ve been as a growing person, and meeting people who had similar experiences to me, or completely dissimilar experiences to me, who loved the songs and had some moments from their own lives that they could tie into the music. It was really mind blowing and so special. That really kept me going.

I think the love of the music and the love of what I do is the only reason I can continue to do this, because it is a job. If I just wanted to put out music, and throw it up on Bandcamp and say that’s it—that could be a way to live my life. And that would be just for the love of doing it. But I want this to be my career and I want to take it as far as I can go, and that’s just where I’m at as an artist. But that also means that I have to be prepared for the stressors as we were talking about that come with making this a career.

Every time I questioned that decision of whether or not I should have just thrown it up on Bandcamp and gone back to working retail, seeing the people in the audience react to my music, and hearing from those people is what reminds me to keep going.

Biancolli: That must be so affirming.

Berrin: It’s really special, and I think it’s kind of the cliché answer that you hear every musician say, it’s so unreal when you hear people singing back to you, but it really is. I mean it, as somebody who is generally pretty introverted, and not the social butterfly in the room. I found it very hard to connect with people growing up, and even now I have a very small circle of people that I let into my life. So it feels really good and affirming that my thoughts can connect people to me, even when I don’t always feel like I can connect with people one to one.

Jervert: Being open in the music industry as someone with a diagnosis like bipolar, how do you find that? We just talked about stressors in the music industry. So you’re being both open in the music industry itself and then you’re also being open with your fans and just the general public. It’s overcoming stigma of difference of any kind, it is hard in everybody’s day to day life, but when you’re this larger personality with a larger following, and you’re like, hey. It’s kind of like me with voice hearing. You just—you have this way of putting it out there, and what are the consequences? I have plenty of consequences in my life of saying it openly and in public in different ways, that I am a visions and voices person. So what is that like for you, what are the benefits? What are the consequences?

Berrin: That’s a great question. I think one of the bigger consequences, I think, being a public person, in general, is being exposed to a lot more opinions that any human being should naturally be exposed to.

Jervert: I just have to say I can’t and can imagine.

Berrin: I think every person who starts putting things out publicly is thinking, even if they think they’re thinking publicly is thinking very locally, localized inside your own mind, localized to your own community. So, I would say something that I thought would be completely non-controversial, whether that was something political or whether that was something surrounding my mental health that I was like everybody knows and agrees with this because “this is the normal way to think.” And then suddenly, you’re exposed to the fact that the internet is a lawless county with no borders, and anyone can find your stuff.

I think I was talking about the TikTok algorithm…I promise this is relevant…and how TikTok comments are a lot meaner than normal commenters. The reason I believe this, my unified theory of TikTok is that TikTok comments are a lot meaner because the algorithm is servicing you to people who they think will like your stuff based on things that they have watched in the past, but who are not necessarily looking for you.

I could say, oh, I had this experience on my tour expecting the people who follow me or my fans, they’re going to react well, and then get a comment, like, wow, they’ll verify anyone these days. It’s sort of like you’re not prepared for that kind of a comment because you’re thinking the people you expect to see this will see it. You’re speaking to your audience, you’re speaking to your localized part of the community, and I think when you’re first exposed to that, it’s very shocking, and very jarring.

For me, it made me want us to stop showing my personality altogether outside of my music, and I went through a period of time where if I was not releasing music. I only wanted to just post pictures of what I was wearing, where I was. I didn’t want to talk about what I was feeling. I didn’t want to talk about what I was thinking because once you reach a level of vulnerability, with the internet in that way, it’s like you’re allowing people to love you for who you are, but you’re also allowing people to hate you for who you are.

Jervert: Does it translate to the mental health stuff? Is there a specific vitriol that comes or the opposite, the positive consequences of connection and support around the sort of openness around that?

Berrin: To be honest, I haven’t talked a ton about my bipolar publicly yet. So I haven’t really gotten the opportunity to receive that criticism just yet. I think that the thing that has been difficult as it pertains to mental health is when my music came out, I got a lot of reviews that were like, Oh, it’s melodramatic. It’s moody. It’s so angsty. It’s so you know, over the top all of these feelings that she’s expressing.

Jervert: Which is what makes it awesome, by the way.

Berrin: Well, thank you. But also I think the idea of melodrama and to have my feelings be called melodramatic, it’s reductive. I think it’s reductive one as somebody with a mood disorder and two as a young woman because we’ve been hearing since the dawn of time, this idea of like women and hysteria and you’re being overdramatic.

Biancolli: What I love about your music is your songs are really crunchy and catchy. They’re tuneful. They’re hard. The lyrics are so vivid, and they’re blunt, and they’re emotionally searing, and they’re often heavy—and, in fact, one of your songs is called “Heavy Heavy,” and it grapples with depression.

You’re owning everything. You’re putting it out there. And when you brought up hysteria—for me, that’s one of the great examples. “Great” in not in the sense of being wonderful, but great in the sense of being a vivid example of women being told—being shouted down—by the patriarchy. “Oh, are you expressing yourself? Are you empowering yourself? Are you telling the men in the room what you think and who you are? Oh, you’re being melodramatic. You’re hysterical.”

And what you seem to be doing with your music is you’re saying, “Okay, this is me. I’m putting this out there and I’m owning it, and I’m empowered” I don’t mean to put words in your mouth, but is that how would you describe it?

Berrin: That’s totally fair. I think I’m putting it out there in the way that I am because it’s all I have. That’s the experience that I can speak to, and those are the states that inspired me to write music in the first place. People always ask me about Pom Pom Squad and the whole cheerleader thing. It’s a frustrating kind of thing to address over and over and over, not because it’s not a valid question. I think the cheerleader character is very polarizing in culture, and I initially adopted that character and named the band the way that I did because the cheerleader always felt like the archetype of the “good woman” to me or good girl, what you’re supposed to be as a young woman, and I started writing music when I was 16. So I was still in high school and I was struggling with the fact that I didn’t look like the girls that I saw on TV as being like valuable, societally valuable girls. I was not, I am not a white woman. I’m not straight. I wasn’t conventional in the beauty standards of whiteness when I was growing up, particularly, and I was angry, and I was frustrated, and I didn’t really see a place for myself in the world, in society because there is nobody that I could look to that modeled a career that seemed feasible to me or realistic.

My mom and I really loved listening to music together and going to shows together. When I was really struggling with my mental health in high school, that was something that she did for me that changed my life was taking me to shows—and if I got all my homework done on a school night, we would go out to the House of Blues in my hometown, or we would go out to these like little dive bars in my hometown, and I would just, it was a study for what I do now. I learned so much about performance by watching shows with her, and I think she loved the Smiths and the Cure, and like all music, and my dad really loved hip hop, and R&B and I think you kind of reached that age where you start with your parents music, and then you sort of find what your niche is. When I found out about Riot Grrrl and Grunge that was the game changer.

Jervert: That was going to be my next question. I want to hear more about your presence and identity as a person of color in the music industry, who is also out as a person with a diagnosis. How is this affecting your career?

Berrin: As it pertains to my experience in the music industry and the music that I write, my music is queer because I’m queer. My music is inherently related to the experience of being a person of color because that’s the only perspective that I have been given, and it’s a perspective that I feel grateful to have because I’m proud of who I am and it’s taken me a long time to be able to say that and stop seeing that as a detriment, and start seeing it as an asset because I’m proud that I get to have different perspectives to the mainstream.

But that said, it definitely impacts how I feel that I have to conduct myself around people. I think we’ve all heard at this point, certain stereotypes about people of color, and how they’re allowed to experience anger or how they’re allowed to experience rage. I mean, I think without kind of blowing up any individual person, there’s members of my family, who have darker skin than me, and who have been deprived of really critical, important diagnoses because they were being told, you know, oh, you’re having a panic attack when they actually had a heart condition.

It’s an added layer to the already sort of handshakey, secret code E-World of the music industry. You have to conduct yourself a certain way, you have to talk to people a certain way, you have to talk about yourself a certain way. To also add that, for me, an example that I always use is when I will go to a venue, Pom Pom squad is my project. And, I’ve had permanent band members for the past five years, who will continue to be my permanent band members and who I feel so lucky to have in my life.

But at the end of the day, it is my band. But the one man in the band would always get asked, what does she want in her monitor? How does she want her guitar mixed? And, at the end of the day, it’s me who’s standing at the front of the stage, and who’s making the calls. And in my personal experience, that was when I knew I wanted to get serious about music.

I decided to transfer to music school to learn about audio engineering, and music production—and business—because I knew that if I didn’t that I was going to be talked down to and that I was more likely to be taken advantage of. And it’s the best decision I’ve ever made for myself, because I have seen those contracts that I’ve been scared of. I have been in those situations where someone tried to tell me like, oh, well, we fixed that with your monitor. And I can say, “No, you didn’t, because I have ears, and I can hear it.” And I know what to listen for.

Biancolli: I’m curious about that moment. What was the moment you decided, okay, I’m not just going to do this for myself as a hobby, I’m going to make a career out of this. What led you to that moment? And was part of it, “Oh, I have to say something, I have to express something, I have to put my voice out there in a way that people can hear.” What led you to that? I’m really curious.

Berrin: That’s a great question. And also definitely pertains to my mental health. So up until my sophomore year of college, I grew up singing. And I started playing guitar when I was 14. But there was something in me that never connected the dots, that you could start a band or could make music myself. I was really focused for all of high school on being an actor. I love films, and I love visuals. And that’s a huge part of my artistic identity, and so at the time, that manifested as me wanting to pursue acting.

So when I initially got into NYU, it was to be in the Acting Program. And I was there for two years. And it took such a toll on me mentally. That was around the time that I started to notice that there was something wrong, “wrong with me” beyond just depression and anxiety. I would have panic attacks during classes. I would just start crying out of nowhere, I would get irrationally angry. I was falling behind because I was struggling, and how can you do something as physical and as mentally taxing as acting when you’re not feeling whole? That was my experience with it, at least, and I would fall behind—and I basically got told, there are no bad classes, only bad actors, which just made me shut down more and retreat into myself.

Biancolli: That’s horrible.

Berrin: It was, and I heard a lot of really ugly things from acting teachers about myself. I remember a teacher basically implying that there was like a semester meeting where they took everyone into a room and they said, here’s what you’re going to be typecast as, here’s what you’re excelling at, here’s what you’re not as good at. All the girls came out of their meetings, like, he told me that I’m beautiful, and I’m a leading lady. And I’m really good at X, Y, and Z. And I’ll be great for these kinds of movies. And I went into my meeting, and he basically implied that I’m not pretty enough to act and then was, like, but you’ll probably do relatively well, as an actress of color.

Jervert: Are you kidding me? Your story just reminds me of how little we understand difference, and allow for difference and allow for different pacing and different bodies, different everything. We’re just so close minded around, “Here is the path, If you can’t walk it, you’re nobody and you can’t get anywhere.” Right?

Where is the understanding of diversity and difference in the least. Like you’re talking about in the schooling environment—it’s just a crazy situation where people do fall behind and blame themselves.

Berrin: It was really appalling. There was also this kind of group mentality in that I would see people fall behind—peers, the people around me, and me included, because I was influenced by the people around me. It was like you were the joke, if you’re the one who was falling behind in the class. And you were getting in everyone else’s way. And then I became that person, essentially things with my mental health just got to a really bad place.

I was doing short films for students at the time. And I really enjoyed doing short films and meeting other film students and kind of seeing their processes. And while I was working on a short film, I met some guys at NYU who were studying music technology.

And they started, talking about building amps, and all the things they do and how they’re recording stuff. There are these moments in my life where I just adopt this kind of bravado that I don’t really even understand where it comes from. I think part of it is ego, and part of it is aspiration. I basically lied, and I was like, Oh, I have a band, and I make music and blah, blah, blah. They were like, Oh, really, and I was like, Yep, my band is called Pom Pom Squad.

I made up this whole thing. I don’t know, it was just a moment of ambition. And I’d started writing music in my bedroom when I was 16. So suddenly, these guys were like, Oh, well, we want to hear your music, and so I had to pull out these demos that I made when I was a teenager. And then I lied, and I said, I was working on an EP, and so then I had to go write an EP.

But basically that eventually became a music career. And what I wanted to do was that—I’ve been working with these guys. That was my introduction to music production as a concept, as I was trying to work out parts with them for music that I wrote and mix these songs. I would try to express an idea, because I’ve listened to a lot of music in my life. I’ve always been a music fan, first and foremost. I didn’t have the language to express what I wanted. And there’s one day where we finished a song, and I kind of sat back and let them take the reins on something in a way that I didn’t feel comfortable with. A couple months later, I listened back to the song and I was like, I just don’t like it. I don’t feel comfortable to release it. And I went to them. And I said, Hey, I really I don’t know, I don’t feel good about this. It’s just off to me. I want to start it over. And they basically were like, you’re being crazy, like you should just chill, it’s not a big deal. I let them, like, mollify me and I was like, okay, and I left the room, and as I was walking out of the room, I heard them all laugh at me. That’s when I decided I need to learn how to produce music, because I just never want to feel this again.

Biancolli: I’m sorry for all you went through. But in a way, that story—your origin story of Pom Pom Squad and how you came to this moment when you realized, “I have to own this”—to me, that is the embodiment of that “kick-ass cheerleader persona” that you took on. And I love that piece of it.

You’re saying, “Okay, I’m going to take this image of femininity that is just so stereotyped—and it has so many negative associations with weakness.”

And in that moment, you became that kick-ass cheerleader. So I’m wondering: Was that freeing for you? I’m just curious if there’s something, also, about the process of writing and making music—whether it helps you maybe understand yourself, and then express yourself in a new way?

Berrin: Definitely, I think the goal of my music first and foremost will always be to understand myself better. When I’ve written with anything other than that goal, I have not succeeded in creating the kind of work that I want to create. Because I’ve written two EPs. My second EP is the one that I had the biggest hand in production wise, of the two that I put out, and so I consider that my first EP.

My first EP was really about my diagnosis with bipolar and struggling with my mental health and learning a lot about myself. During that time, I wrote it when I was maybe 20/21—so very, very early into these discoveries. And it truly did help me find the language to understand my own brain better, and to communicate my feelings better. And with “Death of a Cheerleader,” that album was dedicated to my journey with my queerness and coming out and understanding these feminine archetypes that I had held myself to in my own life, that held me back from being a fully formed human being. But all of the projects that I’ve done have had a huge relation to where I was, mentally and with myself.

Jervert: I resonate with that process of a work of art moving something through you and out into the world in this prideful way around something that we’re supposed to be ashamed of, and then transforming it and letting it churn and actually come out as this beautiful part of our wholeness.

I really resonate with that. I wanted to ask you, since we’re talking about this experience with your first album, where you were churning, letting the music turn the bipolar diagnosis, and how you were coming to terms with that—and learning the language to speak about it. And to understand it as a part of your wholeness.

I also had the bipolar diagnosis. I don’t identify with it any longer. But for me, it was very much a dance of trying to find what was part of my creative uniqueness, the diversity of who I was, and then the other things that may or may not have caused stress or could be under the column of disease. Parsing those two things out for me became a 24/7 thing. Like, where’s my brain now? Is it diversity or disease? Is it creativity or disease? So that became a real exhausting thing for me that I eventually just had to let go.

The way I solved that for myself was I let go of the bipolar label altogether. I wonder what your experience with that as a musician. As this wonderfully talented, creative musician…how you parse the disease versus diversity, creativity versus disease of paradigm?

Berrin: That’s a great question. And I’ve never heard it put that way. That gives me a lot to think about as well.

When I was diagnosed, I was initially confused because I only ever heard people talk about bipolar as you’re manic—you’re having a great time, you think you can do everything, you’re on top of the world, and you’re depressed and you’re low. And I experienced those lows, but I had never experienced the manic “I can do anything” highs, and so when I was told that I was bipolar, I was like, there’s no way—that doesn’t make any sense. But the way my bipolar manifests is depression, baseline and then hyper vigilance and really high extreme anxiety, which— I didn’t understand they were related. I was going through the world thinking that everything was going to hurt me, you know?

But I think for me, the highs would manifest a lot of the times as anger, really extreme anger. And there were moments that I obviously wrote about that and wrote it out. But I think the past couple of years I’ve had a really important realization about my mental health, and this is something that I have been on my soapbox about. I think that a lot of young artists are tied to this myth of “you have to suffer for your art,” which I think is actually a really harmful myth. For me, I think that I viewed basically just putting myself in emotional pain as having the experiences I needed to be an artist. So I would put myself in these situations that were almost, “Well, I know this is going to be a great story.” I would put myself in the line of fire, whether that was romantically, or whether that was just making dumb decisions.

Putting myself in an unsafe situation because I was like, “Well, if you want to be a real artist, you have to have experiences, you have to struggle, you have to suffer.” For me as a person with the diagnosis, giving myself that sort of range of emotions was also like walking a very dangerous line with my mental health, because following those highs and lows, and getting really absorbed in the highs and lows, is very dangerous for someone with bipolar disorder.

I do want to speak to something you said earlier, though, in terms of craft, and the idea that a musician embodies what people in the general public are not allowed to. That’s really real, and so accurate, but I’ve also been thinking that there’s a different relationship between the artist and their work and an audience and their work. And in terms of experiencing these altered states, something that I get up on stage and do, for other people, is embody something that they can’t express themselves. But what I have to do as an artist—to continue to have this job—is I have to take what I felt in the altered state and craft it into something. And I think that, especially around women who make music and who make art, there’s the language of craft is often left out of the mix.

I’ll read a lot of articles about cis male artists, where they are like, “It was brilliantly crafted, inspired by events from her own life or from his own life.” And then I’ll read an article—let’s say a woman wrote the same album or a non-cis man wrote the same album—and it’s like, “She is a beautiful songstress.” It’s “he makes” versus “she is,” and it’s this language around women. You either have it or you don’t. Music is just this magical thing that happens to you.

But I think what I kind of want to make very clear about myself, and my artistry is, in terms of the whole “suffer for your art, you have to struggle for your art,” I can make art out of the altered states that I feel. But when I’m constantly living in these altered states in an effort to make more content, or make more art, that’s not conducive to actually crafting, because crafting is something that takes work and effort and sitting down at a desk and trying to bang out a paragraph of writing into three words, to fit the right line.

I think it’s like a piece of advice that I have for artists in general, who experience altered states, through their own mental disorders: Taking care of yourself is the best thing that you could do as an artist, because that’s what’s going to help you make your best work. The suffering is just going to happen, that’s just life. But you don’t have to feed into that in order to make your best work.

Your best work is going to be made when you can have clarity and perspective to be able to share those things. And that’s what allows you to go on stage and embody the taboo and embody the thing that the general public doesn’t get to experience.

Jervert: So I think my final question for you is what do you see the way forward in the music industry as far as people who are experiencing mental distress? We’d spoken with Chris [Bullard, organizer of the Sound Mind Festival] earlier, he said there are a lot of changes happening, there are people being more aware. But what do you think? How do you see the way forward in as far as the music industry and mental health?

Berrin: I think in terms of the music industry, I think we as an industry need to be more considerate of and work harder to provide mental health resources and access for people who need help. I think mental health can be every bit as debilitating as a physical injury. And what musicians do and what people in the music industry do is very taxing physically, mentally, emotionally. But it’s these emotions and these feelings and these experiences that this industry is built on, and so I think the industry needs to take care of its workers and take care of the people who are providing it—the fuel it needs to continue.

If there were no musicians, there would be no music, and there would be no music industry. So I think there just needs to be better care and more intention towards protecting people who have mental illness. And, I think there needs to be a system of healthcare in the music industry. I think therapy needs to be more normalized in the music industry. I think resources and access are the main things they’d need to change in music.

Jervert: I just want to thank you so much for coming today. And speaking to us, it’s been a really wonderful conversation.

Biancolli: It has.

Berrin: Thank you so much for having me. I really appreciate it.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Embodying Emotional Taboos: Musicians and Mental Health appeared first on Mad In America.

A psychologist, novelist, public speaker, poet, and singer-songwriter, Walker is a Missouri Cherokee descendent. For more than three decades he’s worked as a professor, psychotherapist, and consultant based in Washington State — including four years as a psychologist for the U.S. Indian Health Service (IHS) and, afterward, more than 20 consulting for the Confederated Tribes and Bands of the Yakama Nation.

In much of his writing, including Coyote’s Swing, he addresses the devastating impact of the Western, biomedical mental health system on Indigenous peoples — and their experiences, across the centuries, of intergenerational oppression and trauma both personal and systemic. Five years ago, Walker wrote a series of articles for Indian Country Today that zeroed in on such oppressive practices, including the harms of psychiatric treatment on Native individuals and the history of labeling Native children with “feeblemindedness” and, later, ADHD. 

He holds a doctorate in clinical psychology from the University of Detroit. 

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli:

David Walker, it is a pleasure to have you with us today.

David Edward Walker: Amy, I’m very glad to be here. Thanks for having me.

Biancolli: Coyote’s Swing — there is so much packed into that book. There’s a ton of history: Colonialism, imperialism, oppression, genocide. There’s your personal story in there, too. Stories of youth you’ve worked with, stories of your time with IHS and the reliance on the disease model, stories of your time working with the Yakama people. And this all comes together as this really absorbing read. But before we get into everything, I want to start with the title, Coyote’s Swing. People are going to be curious why you chose that. So if you don’t mind, if you could tell that story — and why and how it relates to the topic of your book.

Walker: So let me set a little context for this story too. The story of “Coyote’s Swing“ was told by an important person in the history of Yakama Nation — the recent history of William Charlie, who was Klickitat, one of the bands of Yakama Nation. William Charlie was telling this story to his friend, Lucullus Virgil McWhorter, a real personality and an early activist at Yakama Nation — a white ally who came from Ohio and wanted to basically be a cowboy. And at the turn of the last century and early 20th century, he had a ranch adjacent to Yakama Nation and befriended quite a lot of Native people, learned to speak the language, and became very close friends with William Charlie, who told him this story. So I’ll read the story and then I can explain why it informs the title of the book. Here it is:

“The Cat belongs to the white man and goes ahead of his travels everywhere. The white man followed Cat to America which until that time belonged to the Red man. Coyote [Spilyáy] was preparing to bring the Indians to a higher stand in life, bring them to education and a written language. Cat did not want this, so he fixed to get rid of Coyote. So he fastened a great swing to the sky. It was a big swing, and the people could swing far out over the world and be brought back by the swing again to their own country. 

Coyote came along and wanted to swing. Cat let him get in the swing and began swinging him. He shoved the swing farther and still farther out, until finally Coyote saw the ocean. He liked this. He asked to be swung over the water, which was done. Then he asked to be sent still farther. That he might see what was on the other side of the ocean.Then Cat shoved him harder, and Coyote saw the land on the other side. He wanted to see still more, and Cat swung him far out over the land beyond the ocean. The swing came back empty, and Coyote was never again heard from. He is supposed to have grown dizzy and fallen from the swing. It is believed that he landed in Germany, for those people are the wisest of all nations, more inventive, more learned than any other country. Coyote is supposed to have continued his work over there, for he had no way of returning to the land of the Indians.”

Biancolli: Thank you for reading that.

Walker: Sure. So I came across that story in a collection of stories pulled together by a folklorist named Donald Heinz. It was coming from the Lucullus Virgil McWhorter archives, which I think are at University of Washington.  I came across this story and I thought it so captured my sentiments about forced assimilation. 

This is basically what I feel: William Charlie is speaking to his white friend as he tells this story, letting him know that this is kind of a warning feature: That voluntary assimilation of new ways, and new cultural ideas, can quickly lead to being trapped. And for the Yakama person, loss of connection to the sacred land of the Yakama would be just a horrible thing. So that’s kind of the message there — that you lose your ways. And Coyote, of course, is the hero trickster of the Yakama people. So we see Coyote kind of get himself ensnared in this, and then he can’t come back.

Biancolli: So that entrapment in many ways, that’s what you’re talking about in the book, kind of the loss of agency, the redefinition by colonists of what it means to be Native people. Is that it — and also the entrapment in the mental health system, entrapment in so many different contexts? Is that what you’re talking about?

Walker: Yes, I’m talking about that, and I’m also trying to use this history — trying to figure out what was the history of the the Euro mental health movement in Indian Country. What’s the history of that? Where did that come from? I really wanted to understand that as a person who was working with Native people, and in doing that, in pursuing that, I discovered that it was very relevant to contemporary times. To now, to right this moment. I wanted to understand. 

I coined the term — and it’s all through the book in various places, because psychologists are fond of creating terms — “generational carry.” I wanted to come up with some way of encapsulating how these kinds of sentiments and beliefs and ideologies come down through generations and become almost so routinized that they’re practically unconscious — particularly in the minds of mental health providers, so called.

Biancolli: I was struck by that term, “generational carry,” and this idea that history — and its literal and figurative assaults on native culture and traditions, and people both broadly and individually, with genocide and everything — is still present in the lives of Native people. A lot of people hear about the data and they don’t connect the dots — like the alarming suicide rates, especially among young Native people. And tribally enrolled Native people, as you point out, have the shortest life expectancy and the highest mortality rate. And they’re facing poverty and powerlessness. “Generational carry” — it’s not that the past is past. The past is present in so many ways.

Walker: Right, and this is one of the things that I had to kind of do for myself — rethinking, what do we mean by history? If we break it down to his story or her story or their story, okay. The Native people in general that I’ve known frequently are very exceptional historians, and often know many stories passed down to them through their elders about what has happened to them, and what continues to happen, and what is happening. So I needed to be educated. I needed to be taught in my own experience — as I say, in the book, kind of what an academic might call sort of a re-socialization experience. 

I really felt, for example, from the very start that the psychology of Yakama people is located in their spiritual traditions. There is no post-enlightenment split between the mind and the spirit. So I had a duty as a person coming from outside trying to serve that, to try to understand — what does that mean? Let alone the idea that I’m coming as an English speaker, and encountering people who have been literally robbed of their language in many respects. So their language still continues, and they’re still fluent speakers on the reservation, but that language actually contains different ideas and different concepts and different ways than I was raised to think or feel.

Biancolli: That interests me too, the language element — which you address various points in the books — and the idea of having the Federal Government define who is technically Native and/or in a Federally recognized tribe. Whereas, from the Native standpoint, they have different modes and approaches to defining that. And I thought that was a really interesting piece of it: the power of language. Anybody who reads Mad In America or listens to this podcast knows the power of language and the empowering force of using your own language and saying who you are — and defining yourself. That’s a huge piece of the move toward empowerment.

Walker: Right. I was charged with a kind of responsibility by my kála, Levina Wilkins, who was manager for a long, long time —  she’s now sort of semi-retired — of the Yakama Nation language program [for teaching] Ischishkiin. She would often say to me, “It’s very difficult for me to express what I’m trying to tell you in English,” as she had been raised in Ischishkiin. 

Biancolli: Well, that’s really interesting. Could you back up a little bit and explain her role a little bit? If you could just speak to the significance of her role in your life and what that term means?

Walker: “Kála” is a term of endearment that means “grandma,” and she’s basically my adopted grandma. She’s not quite old enough to be entirely my grandma, but I see her that way — and she’s a font of wisdom for me. I met my kála first when we were talking as a result of “Pathways to Hope and Healing” conferences that we did on the reservation in the early 2000s. 

She was teaching in the schools in the language, in Ischishkiin, and she wanted to talk about that in relation to what we might do together in the school. We were working in Yakama Nation Tribal School, and also out in White Swan [WA], one of the reservation towns in Mount Adams School District. So we kind of combined forces. 

So she became really important to me, just from the standpoint of trying to be a good helper. And I basically asked her at one point, “Can I call you my kála?” — and she said of course. And I’ve spent so much time with her over the years. We’ve gone through a lot of thick and thin, with different personal and professional issues and trouble. So she’s still with us, and she’s quite elderly at this point. But I talked to her very recently. She’s a really special person.

Biancolli: Thank you for telling that story and explaining her role. But you just made a reference to some of the professional struggles you’ve had. So if you don’t mind, I’d like to go back to those four years that you worked in the IHS clinic, from 2000 to 2004. In the opening of your book, you write: “This book is like a song that arose out of grief. I remember saying, ‘I have to write something,’ as I walked out of a crisis residential center sometime in 2002 after trying to ‘evaluate’ a Native young man so sedated by psychiatric drugs, he couldn’t recall his own name.”

Wow. If you could just speak a little bit, to the impact of that on you: Was that an epiphany? Did that make you start thinking in different terms about this work you were doing?

Walker: I think I already came into Indian country with a somewhat unusual perspective on emotional difficulties that people have. I’ve never been a fan of the mental illness, medical model, psychiatric kinds of ways. I consider human beings expansionist beings, and so I was immediately shocked by some of the things I saw. 

I should also mention the caveat that I had to be really careful in the people and the experiences that I had in depicting them in the book. There’s all sorts of little end notes that refer to these being composite individuals, and so I’m always careful to say that the stories don’t refer to any particular individual — although that particular story you’re mentioning, I can go ahead and say that was one person that that happened to. But everything that has to do with more extensive cases that I mentioned, of people going through different problems with the mental health system, I composited as many of those as I could, because I wanted specifically to avoid identifying people. 

So, yeah, I was shocked, dismayed. And basically, I was pretty much alone in that perspective. This was business as usual. I really ran up against a lot of resistance to even commenting on such things, which was quite foreign to me from the perspective of collaborating and being a co-consultant with people — and just being a helper in general. I really ran into a lot of resistance. 

And I’m talking about mental health providers themselves. It was very much a shock. It was a shock to me to see, for example, that IHS had a very mainstream — don’t mind me saying this, a white Euro — approach to mental health in Indian country. There was very little cultural adjustment or rethinking of it.

Biancolli: So one thing I’m particularly curious about is the impact of all of this on youth, especially youths in the foster system. Could you speak to that a little bit — how they endure their own harms and different forms of oppression, and wind up on cocktails of drugs? That’s, again, another huge topic. 

Walker: It is indeed. And thanks for asking. I had a lot of contact with native foster youth while I worked at IHS. Afterwards, when I was working for Niix Ttáwaxt, which means “good growth to maturity”— and that is the culture-centered [behavioral health] program that Levina, my kála, and numerous other community members helped to support. The creation of which was very short lived, but it was a grand experiment, and so we got to know a lot of displaced youth. 

And Native youth — nationally, in the United States — are a little bit more than twice as likely to end up in the foster care system. In Washington State, they’re somewhat over four times more likely to end up in the foster care system. And this does have to do with poverty, and has to do with family violence. I see family violence very generationally tied to circumstances having to do with institutionalization in American-Indian boarding schools, and the descendant upheaval in family relationships that emerged from that period. So you end up with a circumstance where you can see the cross-pollinization of these larger oppressive phenomena in creating the English-language category of the Native foster child — the Native foster youth. 

I got to know these kids — and I would often see these kids in various difficult situations, crisis situations. I would see them in tribal jail, I would see them in juvenile detention, or they would be brought in by their foster parents, and I would meet with them. And their lives were filled with all sorts of complexities: traumatic violence in their past, physical sexual violence, many, many losses of important people in their lives, deaths by violence, deaths by car wrecks, from substance abuse issues, and these sorts of things. 

And I, for some reason — having been a former dysfunctional youth — had a pretty decent time being able to connect with them. Mostly by using the word “shit.” If I used the word “shit” in a sentence, it was almost always a bridge builder — to “Wow, this white guy has a potty mouth, and you know, I can relate to him. Okay.” So this was one of my strategies in trying to make a relationship there. 

Biancolli: Well, I’m laughing, but that makes total sense to me. Because you’re using a word that’s not a label. I mean, you’re using a word that’s a real word — that’s authentic. They know what it means. And it also acknowledges what they’re going through.

Walker: Instead of saying, “Let’s go do an intake assessment,” I’d say, “Tell me a little bit about the shit you’ve been through.”

Biancolli: And, see, any human being could answer that question and not feel like they’re being judged. So many of these conversations around the medical model versus other approaches boil down to “Oh, what’s wrong with you?” versus “What happened to you?” Or, as you say, “What shit have you been through?”

Walker: Right, so this was a way of getting kids talking. And my kála and I, and also another good, wonderful person, a Blackfoot woman named Verna — Verna was a counselor in both the school systems I consulted in — we created the “Pathways” circles together, where we basically took a non-directive approach. There were some outside boundaries and parameters to structure it somewhat, but we let the kids kind of decide what to talk about. And, yes, they were quite tentative at first, and sometimes kids acted up and this sort of thing. We just worked with that. And because Verna and my kála both treated that as a sacred space, as a spiritual space, which often had a blessing at the beginning of each circle, it set the tone where kids would open up with one another. That helped quite a number of foster youth to make connections with their peers in ways that they did not really have, [such as] solid family connections, obviously, given what they’ve been through. So that was really, particularly helpful to foster kids.

Biancolli: I was going to ask you about the circles that you participated in with these youth. I’m really interested, just generally, in the power of community when it comes to healing, and it’s something that the western model too often overlooks or at least downplays. So in your book, you describe participating in those circles. What is that healing about this in a way that the medicalized approach isn’t? Is it the nature of community? Is it the nature of inclusiveness, and in allowing youth to tell their own story or to be more active in — well, in this case a circle? It’s not treatment, but it’s healing, right?

Walker: You know, I’m coming from a Euro-American culture. I have Native heritage in my family, and I’m proud of that heritage. I do declare it, because I don’t want to forget my grandmother like my past generations did.

But also, I’m a white guy coming into this community, okay? And so I am immediately in a cultural encounter that’s going to highlight my own culture — which, as a white person, is not immediately apparent to me. That’s the problem of ethnocentrism writ large. And what I discovered was a kind of sadness, really, at the intensity of individualism and its effects on human beings. We live in one of the most individualist societies in the world.

I don’t think it’s really as familiar to a Euro-American person to encounter the degree of community that I encountered in Indian country, and the strength of that. Of course, I have Native friends who would say, “Well, there’s a downside to that — everybody knows your business,” and all this stuff. But the truth is that’s a huge strength and a huge asset. 

As I came to be included, and invited and brought into the circle, I realized, “Wow, this is really a life-changing experience.” Whether it was going to a sweat lodge or being involved in ceremonies of particular sorts, or simply gathering in a circle, I realized how fundamental a circle is to human experience. It’s the great equalizer. There is no person speaking to you, giving you a PowerPoint presentation up at the front of the room. There is no person who is elevated above others as being the knowledge bearer, whereas no one else knows anything. Okay? Instead, any knowledge you have to impart or give is seen on equal terms with everyone else. 

I would say it fundamentally changed me as a human being. As one of my mentors, Long Standing Bear Chief — who was Blackfoot, who tragically passed away in 2010 — would tell me, “Be a real human being.” That’s what the circle provides for you.

Biancolli: That’s profound. I mean, your description of it in the book is really powerful, and your description of it right now. What strikes me, too, is you’re right, the Western model — not just of medicine, but of our whole mindset — is so linear and hierarchical. And what you’re describing is the inclusiveness of the circle. If we were in a circle, and we weren’t stepping away from each other, we would see one another as human beings. We wouldn’t demonize one another.

And that’s actually the gist of the book, that people should be seen as human beings. You’re being inclusive, which is the nature of the circle.

Walker: I love to talk about circles, and I could go on and on about it. But this whole other facet of it is we’re also captured by the culture that we come into. And it’s better to be in a circumstance where your culture is brought forward, or in front of you, and to be able to see it — and to see the culture of mental health itself. I wrote the book out of a felt sense of moral duty to try to expose that culture in bold relief in relation to Native culture. To kind of highlight how different it is, and where did it come from. 

Biancolli: You talk about that in the book — saying that the psychiatric establishment, the system, is complicit. The western approach to psychology is complicit in all of that. At what point did that hit you? Did you get that sense in your work?

Walker: Probably the most important single source that kind of nailed me and hit me over the head was Pemina Yellow Bird. She wrote a paper called Wild Indians about the blessing of the cemetery for the Hiawatha Asylum for Insane Indians, which is located in the middle of a golf course in Canton, South Dakota. So Pemina’s paper really alerted me. I was going through a lot, getting in trouble at the Indian Health Service for my views. At that particular moment, as I read that paper, it sort of blew things apart for me — because I had not heard of Hiawatha Asylum for Insane Indians, and when I read about it, I was like, “Okay, now I see a professional ancestry here. Okay, and now I’m in it, and I’m a descendant of this practice, the socialization practice.” In my graduate education I never heard about this. No one ever alerted me to this [as I was] beginning to work with Indian people, and so it kind of blew my mind to see that paper.

Biancolli: Your description of the Hiawatha Asylum in the book is gut-wrenching — just the inhumanity. You also talk about the boarding schools, and the inherent bigotry and dehumanization and the labeling of kids, and the assumptions within the educational system that Native kids are “feeble-minded.” And today they’re being diagnosed with ADHD, and that’s all part of this huge, oppressive system full of assumptions about the Native peoples.

Walker: Yeah, that was another discovery — to see how long that “feebleminded” label was used. I was able to find this Israeli doctor…[Karl] Frankenstein. He had written about feeblemindedness. I believe he was in the late 1960s, early 1970s. And his descriptors for feeblemindedness were virtually the same as the descriptors for ADHD. 

I’ve been around in this work for such a long time that I actually saw Attention Deficit Disorder come out, and then the Attention Deficit Hyperactivity Disorder come out. And it came out of, you know, minimal brain damage, MBD [Minimal Brain Dysfunction], and all these other abbreviations. So when I saw the connection to the word “feeblemindedness,” that really was a kind of a discovery — like, okay, now we see how the heritage of this idea directly plays into ADHD. Not to mention the fact that up until about 2010, Native American boys in the United States led the pack in being diagnosed with ADHD per capita. 

That shifted markedly as the Center for Disease Control and numerous other parties put an emphasis on ADHD diagnosis among so-called marginalized communities and children of poverty — so then other ethnic groups began to catch up to those numbers among Native boys. So I really did begin to see ADHD as basically a school-based diagnosis that has to do with kids not fitting in and not really not being able to learn in schools that are tremendously underfunded. 

Biancolli: Isn’t it also a part of this deeply entrenched bigotry that’s hard, frankly, for white people in the wider system to acknowledge? Not recognizing the bigotry that’s innate in the system, and in our attitudes toward Native peoples? I’m wondering: Why isn’t all of this part of a wider conversation? A wider conversation about oppression of Native peoples, a wider conversation about mental health services, a wider conversation about what it means to be human? Why aren’t we having that conversation more broadly?

Walker: I’m just forming my opinion here, but you know, my feeling about it is we live at a time where there is a kind of a tension between two forces — academically, but also, I would say, culturally. And it has to do with: What is American history? Is American history the unearthing of the real history, which contains, certainly, pluses, but also significant minuses of a country founded on slavery? Of a country founded through the oppression and forced removal of people from the land that was theirs? Is that the history of this country, or is it a revised, homogenized history that is familiar to white Euro-Americans? So when you begin to illustrate various darker sides of that history, you provoke that contingency of people — because that’s not what they’re used to. And they don’t really want to know that, because it seems to sully the reputation of this country and undermines it in some way, which I think is absolutely untrue.

I think that it is the pathway to helping this nation to talk about the real deal of what really has gone down in this country, and to integrate that with more positive views that one might have of what this country has to offer. But I think that those tension points between those two forces — they’re very evident. If you look at the Texas Board of Education, which has an enormous sway over textbooks that are chosen in high school for American history, they’ve been singled out in their choices for not placing an emphasis on — and even, really, — distorting Native history. Not to mention the history of slavery in the U.S.

Biancolli: And of course, within critical psychiatry circles, the dominant paradigm that’s being challenged is the psychiatric disease model. The narrative that gets told, and voices that speak out saying, “No, you should tell the whole story, or a different story” — they get suppressed.

Walker: I think that’s true. And I think if you link that history to just the basic ideologies that inform mental health provision, and you start to say, “Oh, the mental health movement is actually intrinsically tied and complicit to this history,” that really blows people’s minds. They push back on that, because it’s like you pulled the rug out from underneath them. So there’s a lot of resistance to that idea. It’s interesting, because when I wrote Coyote’s Swing I knew that Native people and Native friends and colleagues would definitely read the book. But I wasn’t really charged with that responsibility. I was specifically charged by my kála — and several other people, but my kála was central to this — to write a book for white people, Euro-Americans, so they could understand themselves better because they’ve lost their way. And I took up that mission — and boy, you know, it took me a while.

Biancolli: I got that from the book. What’s next for you with that sense of on that mission? And also, what responses have you gotten? Have you gotten blowback? Have you heard from people whose eyes were opened? Have you heard from people who fell into defensive mode? I mean, what’s been the response?

Walker: So I had this sense of mission — but it became, kind of, a way of protecting myself, of defending myself, because I couldn’t connect with the dominant view.  And I wasn’t going to practice that way. So, what do I do? What do I believe, you know? As I encountered this history, I started to write about it. But I’m still aware that there’s a lot of connection — with what I’m saying — among Native people themselves and people who read Native media sources. 

Yet there’s a big pushback that I’m feeling from certain professionals in Indian country — “What do you think you’re doing?” That kind of stuff. And that put me in a predicament: You better finish up this book, and you better really articulate why you feel this way, and come up with some ideas about alternative ways of approaching so-called mental health in Indian country, which I believe should be owned in the indigenous languages of whatever that means to Native people.

Biancolli: What is the prognosis moving forward? Can there be change? How would that change be embodied, instituted? What do you envision?

Walker: First things first. I mean, I’ve characterized myself as a bit of an earthworm. People like me who are troublemakers, we kind of churn up the soil of what’s out there and kind of loosen it up by critiquing a system. Then there is an opportunity for receding and growing new ideas and new ways and new thoughts. 

I have some thoughts. I have some ideas. But getting back to the circle, I’m just part of this circle. How can I set up a way of encouraging people to look at new ideas and to rethink things?

You know, when I started [with the Indian Health Service], psychiatric labeling and psychiatric drugs were the dominant feature, and in many ways they still are. But there’s been a shift in the whys of that. Initially it was, “That’s the best way to go. This is the way we do mental health.” And now, I think, there’s a bit more of a critical nature. It was a tremendously underfunded agency, with its own internal dysfunction that has never been really helped — with good people working there who are supporting and bringing out new ideas. So there’s been more questioning. I’ve seen some evidence of that.

In the broader society, the so-called dominant society, I’ve seen the same thing. There has been an inner erosion of that particular biomedical view with people like you — Mad in America, Robert Whitaker, all the different people who are writing for that. Paula Joan Caplan, and all the different people that I’ve known over the years. So many people to list. But I think that it’s creating fractures in the system, and we do have many possibilities there. I’m very intrigued and really like the ideas coming out of the British Psychological Society, from Lucy Johnstone and crew. And all the people, John Reed and all those people in the U.K., with the Power Threat Meaning Framework. I like that. I like even Marie Garrau, who is coming from a sociological perspective and talking more about the indigenizing of these ideas that come into Indian country — and being evaluated and understood and either abandoned, discarded, or reframed through the sovereign control of Native people in their own ways of working with their own communities.

So right now, the entire mental health system that comes into Indian Country is controlled by the Federal Government, even though there are tribally granted programs through the Indian Health Service — programs that are tribally managed, but they receive grants from the Indian Health Service. Those grants stipulate that they must follow the central manual of the Indian Health Service for behavioral health, which is strongly biomedical, bio-psychiatric, in its perspective. So I want to see and hope for Native people controlling their own programming — and whatever they want to do with those dollars, and whatever they want to do with that kind of funding. And that’s not currently there. But I see a general erosion possible there with all that’s been going on around these controversies with the bio psychiatric model.

Biancolli: Thank you so much. This has been an extraordinary conversation. David, it was so great to have you. Thank you for joining us today. And thank you for all your work.

Walker: My great pleasure, Amy. Thanks for having me.

Biancolli: Our guest today was David Edward Walker, author of Coyote’s Swing. For more information about him, you can visit www.davidedwardwalker.com or check out his music on davidedwardwalker.bandcamp.com.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post For Native People, the Past is Present: David Edward Walker on Oppressive Mental Health Practices appeared first on Mad In America.

A former touring musician. Bullard performed with acts such as Willie Nelson and Kris Kristofferson. Subsequent to receiving his MBA, he oversaw portfolio management at Acumen, a global non-profit impact investing fund focused on poverty alleviation.

Bullard created the festival based on his personal experience of overcoming mental health stigma after he was diagnosed with bipolar disorder in his mid-20s. Prior to founding Sound Mind, Chris also founded a music support group program for those affected by mental illness with the National Alliance on Mental Illness in New York City.

He holds a BA from the University of Southern California and an MBA from Fordham University.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Karin Jervert: I am here today with Amy Biancolli for what is going to be a really wonderful conversation about music, musicians, the music industry, and mental health.

Amy and I will be at Sound Mind, and I will be on a panel on lived experience with Chris and the musician Langhorne Slim. The festival will address important issues within the music industry, like youth, lived experience, marginalized communities, stigma, and social justice.

Amy Biancolli: I am Amy Biancolli, family editor for Mad in America, and I also report and write for MIA. I am excited to be part of this discussion, particularly because I am a musician myself. I play some amateur fiddle and I’ve also written articles specifically on music and mental health.

Jervert: So happy to be here with you, Amy. And I am Karin Jervert. I am the arts editor here at Mad in America. So, Chris, Amy and I are excited to have you here today for this conversation.

Thank you for being here, Chris.

Chris Bullard: Thank you for having me. Such an honor and pleasure, and I just love the thoughtfulness of everything you’re doing and how much you all are building such an important dialog in the world.

Jervert: Thank you so much for that. I think this conversation is going to be a real wonderful exchange, and Amy and I have been looking forward to this.

Biancolli: Music and art are something that really is important to both of us. So, I’m very happy to have you here. Perhaps you could start off by describing the origin story, the backstory, to the Sound Mind Festival. What inspired you to start it?

Bullard: Yeah, it’s a great question. So much was built around my own personal lived experience. So, when I was first diagnosed with bipolar disorder, like many in their first episode, I spent 72 hours in the psych ward. One of the most beautiful parts of this experience was the way music was part of healing. I’ve always been a musician, and music was such an important way to connect and work through things, and there was a moment in the psych ward where I picked up a guitar and started strumming and playing. The song that always resonates in my memory was Sublime’s “What I Got”—“love is what I got.” There was this moment of everyone coming out of their rooms and in the courtyard, and joining together in song, in the middle of the psych ward.

I think what really hit me was: These were people with very different life experiences. From people who were homeless on the street to bankers, to consultants—and both mental health and music were these unifying forces. We were all experiencing the emotions and feelings and thoughts, as well as being able to connect to it and to each other through music. So that was a standalone moment that didn’t really hit me as an inspiration until much later.

Like you mentioned in the intro, an artist that I had the pleasure of playing with a few times was Willie Nelson. He and others started Farm Aid, which is an annual festival for family farmers. They do such an amazing job of using music as a connective force to bring people together around an important issue. It’s not just going to a festival to party and escape, which obviously can be such a joyous way to dive into yourself and others, but also for there to be an expressed purpose of supporting family farming.

As I look back on my own experience with music and how healing it was, and how it brought people together in that moment and many others—and seeing Willie do that with Farm Aid—I wanted to create a music festival for mental health. Like what had been done with Farm Aid, like what Global Citizen does every year for poverty and mental health. Music is such a powerful vehicle for expressing what’s going on within us. I had started this music support program in New York City. I just thought you know what, I’ll put on a benefit show.

It felt like a huge feat to put on a show with 250 people attending—and that feels small, now that we are going to have 5,000-plus at our festival this year. And what was amazing was just the evolution that it’s had over the years. We did it at this small event with the vision of building it into a festival, and then now, it’s a full-day event that also hosts panels and holistic healing options like yoga and meditation. And each year we’ve done it, it’s grown in terms of the number of partner organizations that are providing resources—and really, the goal is using music as the bridge to bring people together to open up these conversations with artists speaking about their own lived experience, and then elevating all the amazing resources that do exist.

And as you both know, there is no one simple path or option for healing. It’s what resonates with you and your own experience—and how do we have a two-way dialog about this? Bringing people together through a festival has definitely been amazing, to see that happen year after year. Even during the pandemic, we did it as a livestream event and had about 10,000 people tuning in on YouTube.

A big question in my mind, then, was how are we going to have this dialog component? And then you had in the chat people talking back and forth about their own experience and connecting offline after, and I think that’s been the biggest impact for me. Obviously, we’re elevating the resources where people can get support. But we’re also just opening up the conversation in a deeper way—with music’s ability to just open all of us to conversation, to connect. If you’re just going into a support group, for example, sometimes it can feel a bit stiff and tough to really open up and connect, especially for some people, and music has this unique ability to do that.

So the festival has evolved in size and, I would say, also in depth, over the years—with how we’re expanding on the experience to bring people together to both talk and do activities together in a great community format to build deeper connections.

Jervert: Yeah, and I also want to just note: When you were talking about your personal experience playing music in a mental hospital, I have a similar story with a piano and the Moonlight Sonata, which my grandmother taught me. And I remember just being alone. For me, just being alone in that room with a piano and music—and just remembering that engagement with the sound and the playing—it was just like an oasis of peace in a really, really horrific environment for me.

So, your way of connecting to the diversity of experience, and how music brings all of that together and can have the potential to bring in people with varied lived experience together in one experience of comfort and peace, and healing: Thank you for sharing all that. And so glad that that festival has gone from 250 to 10,000 over the pandemic. Wow, it’s amazing.

Bullard: It really has been. And thank you for sharing that. There are so many stories like that, of both musicians and—with things like music therapy now becoming more common—a lot of people who don’t consider themselves musicians are also using music as this tool for healing. I think music can also be a huge source of broader social change, as well. I mean, you look at the civil rights and social justice movements of the ‘60s and events across the country, integrating music as an important form of poetry and ways of connecting to the soul. Not thinking people as separate but, really, what commonly connects us. I used to and still do read a lot of philosophy, and there is this beautiful quote by Plato: “When the modes of music change, the fundamental laws of the state change with them.”

Biancolli: Both of these stories were so beautiful, and they spoke to me as well. Because just as an amateur musician, I’ve always felt that when I’m making music, I’m opening myself to—however you want to define it—to the universe, to other people. And there is an element of vulnerability when you’re making music. Both of you described that peace, but also that sense of connection with something larger. Then, when you make music with other people, it’s a way to communicate non-verbally, which is incredibly freeing—and you form bonds with people, potentially people you don’t know from all walks of life.

So every time I read the latest piece of research—and there are reams of it showing the healing powers, the way that music can help children learn, and help people with Parkinson’s, and how it helps mental health—my response is always, “Well, yeah.” So, I just want to thank both of you for sharing those stories, because that’s it. That’s music. That’s the beauty and power of music in a nutshell.

Bullard: Yeah. It’s really incredible. I love what you said about opening up yourself and collectively to something greater—it’s such an amazing part of it. I love working more closely with the musicians our organization works with. It’s amazing how much I hear that: “I’m not writing these songs. I’m just opening myself up to this higher power, or whatever you want to call it, and the songs are speaking through me.” That’s what many musicians find. It’s the way that they are writing. I think it’s so true what you’re saying. What science shows when you look at the brainwaves of people is they start to line up more when they are playing music together—or, really, doing anything together. For me, that’s almost like a scientific mirror of that phenomenon of just tapping into something that’s beyond our individual selves, which is so beautiful.

With the lens of people’s mental health journeys, that’s an important phenomenon to be aware of—what are you tapping into beyond what you realize was possible. That’s important to listen to, and important to tune into with others.

Jervert: Absolutely. And something I’ve thought about a lot is when the label of mental illness is put onto a creative being, an artist, that there are real ramifications in the political and social justice sense, and historical senses. You were saying, too, that music has a great way of changing the world, changing history, changing social environments.

So, for me, I want to deepen our understanding of artistic diversity as it relates to the labeling of mental illness, and how often that has been for marginalized people. Artists can be very marginalized in their experience, and that the diagnosis has served as a silencer over time for many artists. And when you open up this conversation, it starts to bleed into the thought or the discussion of your right to be diverse and creative and innovative, and different in the world.

Bullard: It’s such an important point. The right to be creative and different—the way you put it, I think, was great. The artist Langhorne Slim, who is actually playing our festival again this year, said something—I’m not going to quote it exactly—but something along the lines of, “When you look at an artist on stage, it’s like looking at them flailing about and performing and going wild. They are crazy.” And in a way, at least for many artists, it reflects these deeper aspects of ourselves that we are so often taught to push down in modern-day society—and really, society at large for quite some time. That’s both why it looks wild and crazy, but also why you identify with it in this deeper way, and why it connects.

It is so important for us to be mindful of that. And on the one hand, I do think the discussion around artists being open about mental health, being diagnosed with mental illness, has made a lot of people very comfortable in opening up and starting this conversation—which is definitely a positive I want to acknowledge. At the same time, the danger is, like you were saying, that creative expressions are being pushed aside because they are coming from someone with a mental illness or something like that. I think we need to be careful even in the language, especially artists of any type—again, music, writing, dance, any artist with influence, and that doesn’t mean you have 100,000 Instagram followers. It’s really us all. We all have so much influence, and just being so cognizant of how we’re labeling ourselves and labeling our work is tied to that.

What happens a lot in the music community, too, is sometimes it’s put on a pedestal to be struggling with things—the idea of the depressed artist, for example. You need to be depressed to create, or you need to be hooked up on a lot of drugs to be in that world.

Jervert: Right. The old “pain creates great art” kind of trope, right?

Bullard: Exactly, and I’m not denying that it can create great art. But you don’t need the pain. They are related, perhaps, but you don’t need to be living in pain for that.

And if you talk to anyone who’s gone through a recovery journey, they would definitely agree with that. I mean, I haven’t talked to anyone who said, “I was in a place of great pain and I was able to move through that, and now I’m clean and sober, but I miss my creativity.” You don’t hear that story. You hear, “I realized that I didn’t need it, and I can still tap into that creativity.”

Biancolli: That’s part of this conception we have of musicians and artists in general. But there is a paradox, also, isn’t there? We’ve been discussing how music is so good for you on so many levels, and you do not need to be in distress to create significant, beautiful music, to have a career. But at the same time, so many people who do pursue it as a career—they struggle.

The Sound Mind website cites a statistic, that 78% of musicians live with mental health issues, and I was curious about that. So, I Googled it and I found that statistic in a recent Swedish study of independent musicians, specifically.

This one study also showed that the numbers for young indie musicians were even starker, with 80% of them citing negative mental health issues related to their music careers. Could you speak to that a little bit—that paradox? That music is so good for you, but if you pursue it as a career, you can run up against these hurdles that can really affect you?

Bullard: It’s such an important phenomenon to really dive into, I think. There are so many aspects of it. Obviously, it’s not music that’s causing these mental health issues. But the way that the industry is set up—and our society is set up around music and really, all of the arts—makes it very difficult, especially now that touring is such a large aspect of revenue for artists. Touring can be extremely difficult on mental health, where you are constantly changing your environment. You’re likely getting less sleep than you normally would, and add on a culture that, at least historically, has been very heavily focused on drinking, partying, drugs. I think there’s more of an acknowledgment around that, and awareness around that, but there is still a long way to go.

And then, finally, in order to make it as a musician, you continue to bring on people around you to support you, so you can focus on the art. Then you have your manager and your agent, and your touring crew. Pretty soon, you are like the owner of a huge company—where all these people, at the end of the day, are relying on you and your creative output for their financial well-being and their livelihood. And that can be a lot of pressure.

That’s what you hear from a lot of artists who are canceling tours, or perhaps even not canceling tours due to mental health. They feel the pressure of “Yes, I can cancel this tour, or this album, or this date, but that not only impacts me, it impacts everyone around me.” Just having a family or loved ones could complicate your own decisions, because you’re worried about how this impacts everyone around you. That can be really tough. And as a result, especially for artists in the music community, it’s really important to tap into what you need—because you can’t take care of anyone else unless you can do what you need to be healthy.

Biancolli: Is this where some awareness within the music industry itself could play a role? What could help implement change? Does the music industry itself need to change—and is there a sense of any movement in that direction?

Bullard: Yes and yes. It does need to change, and there is a sense of movement and momentum. In the five years that Sound Mind has been around, we’ve been a part of a lot of discussions, both with labels and managers, as well as others trying to do similar work specifically for the music community. A number of organizations and consulting firms have popped up to try to help the music industry with context-based therapy, educating companies and employees of the companies how to take care of their mental health.

Especially in America, with our high-productivity mindset, with our careers being tied to our identity in many cases, it can be really tough. And this has to happen in all industries. As far as Sound Mind goes, we’ve really focused on: How can we start with the music industry, and take it from where it historically has been to a much better place? For me, that really just starts with leadership at all levels. It means people speaking up when they feel like their mental health isn’t being supported, whether that’s artists or crew members—sometimes crew members are working 16-hour shifts—as well as leaders saying this is a priority and we want to take care of everyone’s mental health.

For example, one of our board members runs an artist management company. They have little mental health retreats with their artists every now and then, and have regular policies in place to support the artists’ well-being. So, I think just sharing these examples is really important—and then, the leadership from every individual around making this a priority.

Jervert: Does the current narrative of mental wellness exclude states like what we call psychosis, hearing voices and things like that, from the category of wellness? It’s always using that language of wellness versus illness. Does this give us the path to actually de-stigmatize those states?

Bullard: The problem is that binary views in general are going to have this effect. It’s like black/white, queer/straight, mentally ill/well. I think what we’re coming to as a society, or at least what I believe is true, is that these are spectrums—and to acknowledge that within the spectrum, there is a shared humanity. Whatever we can drop back into that language—that connection of humanity—we’re able to really heal on a deeper level. And sometimes, we live in a world where there are binaries: black/white, up/down. But those are all constructs so that we can understand the world, and we have to remember that they are all just constructs that we invented.

So, I think the disease framework can, for some, help reduce stigma around talking about these things and make people feel less of it—because they might even feel a bond with others who share a diagnosis, for example.

I know for me, at least, there was a point where I identified with the disease framework. At the same time, I think a lot about shamanistic cultures where, if you’re experiencing altered states or things that are deeply troubling, there is typically a guide that has experienced these states and gone through them—and recovered. Support groups can be that or could be that, but so often in our society, sadly, the disease framework is often a very rationalistic one—where it’s this right/wrong and “we need to fix you.” Rather than, “Let’s incorporate and integrate this experience into that deeper sense of yourself”—and what we’re calling “illness” or “unwell” might be states that are less healthy for you to be a whole individual, or perceptions of the world that might be less healthy or whole for you to live your best life. And I don’t think those necessarily need to be held within a disease framework. It could be a spiritual framework.

So my answer is, I think it’s possible to do—but there is a lot of restructuring around the way we support people and talk about this, and educate people.

Biancolli: I’m just curious, if you are open to talking about it, to hear your a-ha moment. Did you have one? Did you have an epiphany when the light bulb went off and you started to question this binary framework for the world and the usual psychiatric drug-based treatments? Did you have a moment like that, and if so, could you describe it for us?

Bullard: It’s a good question, and I don’t know if there was a singular moment. A few different ones come to mind. I know from the second I was diagnosed with bipolar disorder, the feeling that it wasn’t a two-way dialog of learning was really counter to the way I thought things should’ve gone. It felt very much like, “This is what you have.” It was just, “This is the label of what this is,” and I felt my experience is so much richer than a label. I realized it’s just a word. It’s just a label.

I struggled with that response from the very beginning, and I think for me, it wasn’t until I started reading psychiatrists, and medical researchers, and philosophers who really had a different view of this—and people who would traditionally be not “woo-woo,” but considered accepted by the general rational society within which we live.

One of the first was Stanislav Grof. For people who don’t know, he did a lot of research around altered states, LSD. He founded Holotropic Breathwork and just saw that the spectrum of these are all related to what people call mental illness as well. These are all very similar states, and what we call mental illness might be actually a spiritual emergency or something emerging from deeper within. People like Carl Jung have talked about this and even William James, one of the founders of American psychology. And then, I also saw an amazing documentary that I recommend to folks, called Crazywise, that followed a number of individuals. It’s well-done. They paint a very full picture of the beauty and the struggle of people who are facing these deeper challenges. Some of what they talked about was the shamanistic culture, and how this is viewed from other societies.

It was, for me, a lack of exposure prior to my diagnosis of so many other ways to view this—that aren’t just me in my own head, rationalizing something. When I was first diagnosed, it was “Okay, I can think this was a beautiful experience of psychosis. I can think that there is deeper meaning here, but no one else around me is reinforcing that worldview.” Now, I have a whole community that agrees with this worldview and is trying to bring these worlds together and help educate others through lived experience.

So I think just that moment of awareness that other people share this worldview is really validating and really important.

Biancolli: Doubling back to the festival itself for a moment, you were just speaking now about the openness of many musicians to talk about this stuff, to be authentic and tell their own stories. So, the lineup that you have is really cool. It includes Iron & Wine, which is the stage name of singer/songwriter Erwin Beam. And then you have the folk band Hiss Golden Messenger. You had mentioned Langhorne Slim, the singer/songwriter. Then you also have singer and rapper KAMAUU, and then indie grunge band Pom-Pom Squad, featuring frontwoman Mia Berrin.

I’m just really interested: Why those acts? Does it have to do with their own experiences in the music industry, their own openness in talking about all this stuff? Was there something specific to maybe even the music itself—how they express things through their music?

Bullard: I mean, first and foremost, it’s artists who want to help support this cause of opening up dialog and deeper dialog. And most of those artists we’ve worked with in some capacity before. Mia from Pom-Pom Squad has been on our podcast. Hiss Golden Messenger, we did a prior event with. So, one, we have seen just the beauty with which these artists talk about these issues and care about these issues, and from very different angles. And part of that different-angles-and-perspectives aspect is really important, especially when we think about music. These are artists coming from multiple genres and viewpoints, different backgrounds of where they grew up, and music can speak to people in such different ways.

The music connects with people in such different ways. So, moving from folk to grunge to hip-hop to funk—whenever we program our events or even our digital programming, we’re trying to also be very cognizant of reaching everyone, and reaching them within different ways. Not only with what the artists themselves experience, but also the form in which they are experiencing it, which is usually their genre of music. So, that’s some of the thinking.

Biancolli: Are you thinking as well about the people who go to the festival? Whenever I go to any kind of a concert, or live music event, or festival—no matter what genre, there is this bond even among the people themselves. For instance, this weekend I went to hear Beethoven’s Ninth performed by the Albany Symphony and the choir Albany Pro Musica, and they were amazing. This sense of connection just among the people in the audience was profound, and I was dwelling on it even as I listened to it. I thought, “What is it about music?”

I actually interviewed an archeologist once, Steven Mithen, who talked about how innate it is for humanity to sit around a fire outside a cave during the Ice Age. Someone is making music, and the group bonds around it. Is that part of what you’re trying to do with Sound Mind? Not just the message of the music itself and the musicians, but to create that sense of bonding, of community?

Bullard: I love that you brought up the ancestral history of music, because that’s where my head was going. We’ve done this for centuries and millennia—as long as humans have existed and gathered—and used music as a way to connect and build these bonds. And that’s definitely a huge part of what we’re trying to do. So much of the narrative around mental illness can sometimes be divisive, even if it’s not trying to be, even if it’s trying to be helpful. And a huge goal of the festival, using music as a vehicle, is this is also a celebration. This is a celebration of all we go through, and how despite the hardship and different perspectives, that’s what makes life beautiful. That we get there.

You can’t have the light without the dark, and it’s okay to express these things—and that is a very big part of it.

Last year, we did it in Central Park in New York City at Summer Stage, and it was a beautiful event. At the same time, one of the things we saw that we really wanted was more experiential elements, where the audiences co-mingle and interact with art and interact with each other. And that’s why we’re doing it on the streets of New York this year. Last year, a lot of people were mixing, but it felt a little too much like there was a stage and then everyone else—as opposed to having so many different elements of an event where people could mix and mingle, and leverage the arts and music as a way to connect deeper in so many other ways. And build new bonds and friendships, hopefully, as well.

Biancolli: What do you want people to know? What should people know about music, about the music industry, about what it means to be happy, grounded, well, human, all of that? I mean, these conceptions that you’ve been discussing of mental health and recovery—is there anything else that we haven’t touched on in terms of what you hope are the takeaways, both from this conversation and from the festival?

Bullard: What I really would love people to walk away with is this idea of breaking down boundaries and barriers, and the classic example of the diversity of a rainbow is what makes it beautiful. When you go to a music festival and you hear all sorts of different genres in music, and types of artists on stage, and different stories being told, that’s what makes it beautiful.

Sometimes, if you go to an event that is just all the same thing, or very similar things over and over again, it becomes monotonous, and it doesn’t help you expand your own consciousness and experience and meet new people, or expand the way you’re viewing the world. For me, that is very tied to what we’ve been talking about in terms of our own experiences related to the framework of mental health, and that it’s not a binary issue of I’m well/I’m unwell. What are these experiences that I’m being faced with, or people I’m being faced with, and how can the diversity of this really add to the flavor of life? That reframing around mental health is really the potential music has in the conversation, and I think music has that potential across the board.

Even coming to perform with other people, the reason it’s so beautiful is because people have different voices and are playing different instruments—and we need to think in a similar way about different perspectives around viewing and interpreting the world. And as long as people are living healthy lives filled with love, and really can take care of themselves and others, we should be able to uplift all those different points of view.

Jervert: I love that so much, Chris. Thank you so much, and I love how you’re saying to just use these experiences, the diversity of this experience, to expand our compassion for one another and our understanding of each other’s wholeness. That’s just beautiful.

This festival—I am looking forward to it And Chris, you’ve done such a wonderful job with it. Thank you so much for founding it and putting it together. I admire how much you’re bringing in different voices and different perspectives, and trying to hold all of what we are as a community of people with these experiences. So, thank you for your work.

Bullard: I enjoyed this so much. You’re both so wonderful to talk to—and thank you for this opportunity, and again, for the work that you all are doing. I’m just so excited we all got to connect. Thank you so much.

Header photo credit: Hannah Cohen

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Chris Bullard—The Sound Mind Live Festival appeared first on Mad In America.

Greetings to all in the Mad in the Family community. I’m the new editor of this bustling corner of Mad in America, and I’m thrilled to start working with you all.

As I write this, banging away on a laptop at my kitchen table in Albany, New York, I’m filled with admiration and gratitude for everything Miranda Spencer has done with this Family Resources page: Establishing it, nurturing it, filling it with the latest research, stories, podcasts; encouraging dialogue; connecting readers on a wide range of topics affecting parents, children, and families.

These efforts are of critical importance, and not just for those directly affected. Such work is significant for all of us, here and everywhere, who are concerned with the prevailing psychiatric hive-mind that emphasizes diagnosis and disease — and deemphasizes the individuality and diversity of human experience.

Everyone has a story. Everyone has some bendy path that’s brought them to MIA, some rambling odyssey pocked with bumps and potholes. At some point on that journey, maybe you — or your child, or another loved one — got stuck or pitched off the road entirely, landing in mud and thorns. But somehow, tapping strengths unknown and unseen by others, you made it out. On your journey toward healing, you made it here.

And perhaps you have something to say about it. Something you want to share, whether with others in similar situations or with the wider readership. Perhaps both. Either way, I’m here to help.

I’m now in the midst of my third year with Mad in America, where I’ve reported on a variety of topics. But my own story — the one that brought me here — goes back much further, to my father’s suicide attempt and talk-therapy hospitalization in 1974; my sister’s many, many drugs and hospitalizations, leading to her suicide in 1992; my husband’s suicide in 2011; and my life since as a widowed mom of three (now all grown).

To be clear: I’m not a psychiatric survivor myself, and I can’t claim to know how it feels to endure such pains. But in an odd way, my losses and life experiences have illustrated the fraught history of psychiatry, showing me what works — and what doesn’t — in addressing mental anguish. And the pharma-driven disease model isn’t it.

For more than a decade now, Mad in America has worked to shape a different narrative. As you already know if you’ve spent time on the family page, this section of MIA is filled with family-themed articles, resources, and ways to connect. Among them are online support groups, pieces on the latest research, personal stories and other blog contributions.

Also included here is psychiatric drug info, plus explorations of issues affecting parents, schools, children, and youth. There are interviews, profiles of alternate approaches, stories from around the web, and Mad in the Family podcast episodes. And artwork: Mad in America’s “Beyond Labels and Meds” exhibition includes profiles of its extraordinary teen artists, showcased individually on the family page.

All of this builds on a platform for change, providing families with inspiration as well as relevant and necessary information — and giving them a voice. Because voice leads to empowerment.

As anyone who has brought a child into the world already knows, loving and steering them into adulthood is no small thing. They’re the center of your universe, which is forever changed. You’re forever changed. From the moment that baby is born, flailing and howling to be fed, you know you’ll do anything to help them thrive.

So if you have something to say, or something you think we should be covering, please feel free to reach out to me at parents@madinamerica.com. If you want to tell your own story, or your child’s, please reach out, too. If you just want to express some thoughts via email, but not for publication? Again, reach out.

I look forward to communicating with readers of our MIA family page, helping you connect with each other, and helping you tell your stories.

Communication, after all, is everything. Change can’t happen without listening and learning, then turning that knowledge into action.

I’m here to listen.

The post Everyone Has a Story appeared first on Mad In America.

Known for her warmth and decency, her activism and resolve, Brown is being mourned across many overlapping communities in mental health, human rights, civil rights, and disabilities activism. Her decades of work included campaigning for human rights, leading MindFreedom International, and working as a pioneering on-staff peer-support specialist for the New York State Office of Mental Health.

She was also a longstanding and deeply influential advocate for informed consent and an outspoken international critic of forced treatment. Her advocacy and activism, born and bred in New York, took her from New Zealand to Finland to Ghana, where her family had roots; in her work for NYS OMH, she was key in developing the Peer Specialist Civil Service and facilitated training on varied approaches to recovery. She also served as MindFreedom’s chief representative to the United Nations.

In a Facebook post honoring her sister, Jocelyn Brown described her as endlessly giving and always concerned for others. “She didn’t have a selfish bone in her body. . . . Celia was a pillar of strength,” she wrote, “and while many of her constituents depended on her to lead, to make power moves and to advocate for the disenfranchised, her physical state was ‘itty-bitty’ in the grand scheme of things. She stayed on course and continued to help, support, lobby and protest injustices in the mental health field.”

She thanked the community for its outpouring of tributes and expressions of grief from those who knew and worked with Brown.

“Celia was such a soft spoken beacon of hope for so many in NY and around the world, it’s hard to overstate the impact she had and the void she is leaving behind,” said Peter Stastny via email. A psychiatrist and advocate for change, he met Brown in the 1980s at the Bronx Psychiatric Center, where, working as a groundbreaking peer specialist, she was part of a team that visited the state’s outpatient clinics in an effort to inform and transform mental health services around the state.

A founder with Stastny of the International Network towards Alternatives and Recovery (or, as it’s now rendered, Rights-Based Supports), Brown recently helped organize a webinar on the challenges of peer work within the existing system. “I cannot believe that we will never do anything together again on this earth,” he wrote. “Many others will honor her vast accomplishments, but I can only say that she was a shining light in my life opening many doors to understanding the people we are meant to support and many opportunities for productive collaborations. Thank you, Celia, for all you gave to us with your heart and soul.”

Others shared similar memories of Brown, describing a woman whose humility and approachability belied the power of her commitment to change. Brown labored equally as both civil servant and activist, each role informing the other.

“You can see photos of her standing up and convening a conference, and in the same breath you can see photos of her with a bullhorn in the street,” said Harvey Rosenthal, head of the New York Association of Psychiatric Rehabilitation Services. “She could sit at the table. She could stand at the dais… She could certainly speak some powerful statements that brought a lot of people out — and in particular, I would say, for recovery, for rights, for racial equity. And peer support.”

Rosenthal, an advocate and provider in long-term recovery, first met Brown in the early 1990s while she was working for OMH. “She crossed the line so seamlessly between being a regional specialist for the Office of Mental Health, but also a profoundly grassroots, change-making, truth-telling advocate. But you couldn’t tell the difference.”

Brown’s lifelong work spanned multiple corners of the globe and diverse realms of rights campaigning, delivering talks on a range of topics involving recovery, peer counseling, and cultural issues. A founding member of the National People of Color/Consumer Survivor Network, in 2014 she helped create Surviving Race: The intersection of Injustice, Disability and Human Rights following the police killing of 18-year-old Michael Brown and the subsequent start of the Black Lives Matter movement.

Keris Myrick, a former head of the National Alliance on Mental Illness and a longtime presence in the peer community,  described her “tenacious fight for rights and recovery, particularly for people of color. For me personally, when the C/S/X/P movement” —  short for the consumer/psychiatric survivor/ex-patient movement  — “wasn’t welcoming or understanding of my journey as it is placed in a Black cultural context, and me as a large Black indigenous person who navigates the white dominated world in a way that I can survive, Celia got it. And was not only welcoming and encouraging, but also supportive.”

“She was a leader,” Myrick wrote in an email, “that mentored others and helped so many — not to find their voice, as we already had a voice, but she helped us to honor our voice and know our voice and know that experience has power and a place in our movement.”

In a conversation with Mad in America’s Leah Harris in 2019, Celia Brown spoke of the impact of Michael Brown’s death. “I just felt like, ‘What can we do?’ And then I started to think of my son, and my nephews. What if they go through this and they don’t survive? I was really afraid, especially for my son, he’s a young Black man, and everyone else. And then I started to think about, what can we do as a movement, because we’ve done so many incredible things, to be a part of this time in our history? So yes, Black Lives Matter came, but what about our movement partnering with them, and any other coalition that wants to fight for this?”

The nexus of civil rights, human rights, and the survivor-led push for change in mental health was all of a piece for Brown, whose own experiences of sexual abuse, racist practices, forced treatments and related trauma were formative in her life and work. As she described in a 2008 Madness Radio podcast interview with counselor and advocate Will Hall, she was first hospitalized at age 16 in 1980 — the start of an eight-year ordeal involving more hospitalizations, multiple drugs and diagnoses, and loss of agency.

The result of those labels, she said: “No longer am I Celia Brown. I am a diagnosis.” But as she told Hall, her mother — part of the civil rights movement — refused to sign a document committing her to long-term state care. Eventually, Brown transferred to group housing. And in 1988, she attended “The Self-help Vision Conference” in Troy, NY, which opened her eyes to another way forward and introduced her to other foundational players in the early movement. The label-shedding commenced.

As she described to Harris: “I met Judi Chamberlin, Howie the Harp, Joe Rogers, Ed Knight, a few people that were already in the movement. And they were talking about alternatives to the mental health system, and developing drop-in centers and a self-help consciousness, that everybody has a right to choice. I was in a program where that wasn’t happening. I had no choices, really, only the choices of what the program wanted me to do.

“And I was just blown away. I remember saying to Judi Chamberlin, ‘Who’s allowing you to do this conference?’ And they said, ‘No one, we’re empowered, we’re activists and we can do this.’ And that conference transformed my whole life. I always knew that there was something different, there had to be something where people were talking about choices and talking about their rights. And here I found it. I have to say that that experience really changed my life. I came back to my housing program and I started to organize.”

So began Brown’s subsequent and irrepressible quest for both awareness and meaningful systemic change, becoming a member of MindFreedom — at the time, known as Support Coalition International — and getting involved in innumerable campaigns, organizations, and initiatives involving human rights in varied contexts. Among the many groups she served in multiple capacities was the National Association for Rights Protection and Advocacy (NARPA), where she sat on the board.

In a page of tributes to Brown compiled on the NYAPRS website, Rosenthal and others spoke of Brown’s unyielding passion and efforts to shift both paradigm and practice within mental health. As he wrote in the opening tribute and announcement of her death: “Celia was and will always be one of our movement’s most cherished and most influential leaders, a very kind, devoted, determined and humble leader who led the way in the advancement of rights-based advocacy, peer support, trauma informed approaches, cultural competence and humility, peer specialist roles and numerous efforts to combat racism and discrimination.”

Laura Prescott, President of Sister Witness International, wrote of her Bronx accent, her advocacy for people reclaiming power, and the way she “wordlessly anchored a space, making it feel safe because she was there. I admired the way she let us into her world, sharing her joy, anger, sadness, and love with tremendous grace and courage. . . . To me she will always be an example of what can happen when we dare to live with our hearts full and open.”

Tributes also flowed in across social-media platforms, where colleagues and compatriots in the peer movement mourned her passing and recalled both her kindness and profound commitment to change. “I’ve been an advocate for over 30 years, and I’ve never seen this outpouring of grief and gratitude — and it’s so beyond New York,” said Rosenthal, adding that he’s seen many of “the greats” honored over the years. “But there’s something about Celia that crossed all boundaries.”

On Facebook, Daniel B Fisher — an Open Dialogue family therapist who works at the National Empowerment Center and the National Coalition for Mental Health Recovery — called Brown a “mentor” and noted her 12-year service on the board of the NEC, “giving us her wisdom, strength, and support. She had a uncanny ability to bridge divides in our movement. I can hear her caring, loving voice right now, that we must carry on, reach out across generations, and around the world as she fearlessly led us to do. . . . My heart goes out to her son Kevin, who grew up in our movement and to the rest of her family.”

In her post, Jocelyn Brown said her sister will be memorialized twice in the months ahead: “One ceremony will be in Ghana, West Africa in the beginning of April where her ashes will live in the waters of our Ancestors. And the other service will take place in New York in February. Celia needs to be remembered for her life’s work, including all the people she’s touched along the way. The date and time will be announced after the holidays.”

Meanwhile, she asked members of the community to pay homage to her sister with donations to help build “a homestay and educational center” near Elmina and Cape Coast castles, which held enslaved people on the coast of Ghana before crossing the Atlantic. She also asked them to contribute memories of Celia Brown to a documentary film project honoring her life and work.

In an email, attorney and PsychRights.org founder Jim Gottstein recalled the “amazing things” Brown did for the community. “There have been an immense number of accolades for Celia Brown on her passing, all deserved, and none hyped. . . . She was truly a gentle giant, who kindly stood up for what is right,” he wrote, noting her “instrumental” role in the passage of the UN’s Convention on the Rights of Disabled Persons (CRPD). “She always seemed somehow to be there, especially when she was needed,” Gottstein said.

In her last year, battling cancer, Brown “persevered.” Just three weeks before her death, she delivered a keynote address — on “Peer Support Facilitates Change: Improved Quality of Life” — at the annual conference of the United States chapter of the International Society for Psychological and Social Approaches to Psychosis (ISPS-US).

“She can never be replaced and no one can fill her shoes,” Gottstein wrote, “but she would want us to do what we can to stop the horrible abuse of diagnosed people and provide help instead of hurt.”

Or, as Rosenthal wrote in his opening tribute for the NYAPRs: “Celia was a humble but powerful changemaker and truth teller, whose love, kindness and inspiration touched everyone she met. She was both a Mother of our Movement and she was a very dear friend to me. Her legacy will live forever. Every time we stand up for recovery and peer support and march for choice, rights and social justice… Celia will be there.”

In her conversation with Will Hall back in 2008, Brown spoke of her efforts to help others as part of her own path toward healing. She talked about her human rights campaign to put psych survivors “on the map” alongside those with physical disabilities. And she emphasized, in speaking of the UN Convention, the imperative role of human rights in any and all efforts moving forward.

“We have the right to our own treatment — or not treatment. We have a right to what works for us. And we need to be listened to. We need our autonomy and self-determination. . . . We have a right to life. We have a right to education, okay? And we have a right,” she said, “to liberty and freedom.”

The post Celia Brown, R.I.P.: Psychiatric Survivor, Pioneer, and Global Activist for Change appeared first on Mad In America.

“Have you ever done everything a doctor told you, only to find yourself sicker than before you began treatment?”

So asks Bracken in the first paragraph of her memoir, a devastatingly honest, ultimately hopeful account of personal and family anguish marked by crashes both literal and figurative. She zips back and forth in time, describing both her mother’s decades in the system and her own long arc of anguish and recovery—and touching on her daughter’s story as well.

The multigenerational saga begins in 1959, with her mother’s hospitalization for depression, and cycles through a decades-long ordeal that led to 37 ECT sessions (with minimal anesthesia) and psych drug upon psych drug upon psych drug. As a kid, Bracken had questions (where’s mom? why are the grownups whispering?); as an adult, she found answers in 30 years’ worth of medical documents meticulously preserved by her father.

The revelations were many. A full list of Helen Dempsey’s meds in the appendix includes barbiturates. Amphetamines. Tranquilizers. Antidepressants. The benzodiazepine Dalmane. The anticonvulsant Dilantin. Beyond all those medications and ECT, Dempsey also received some talk therapy—“but I’m not sure how helpful it was for my mother to talk with her male psychiatrists,” Bracken writes, “especially given the medical establishment and cultural attitudes toward women at the time.”

Understanding her mother’s history became critical in understanding her own grappling with psychiatric harm, which began in 1993 with an intractable migraine and a descent into suicidal depression. We learn of her own sessions of ECT, her own hospitalizations, her own providers who failed to listen, and her own long list of meds, featured in the appendix below her mother’s. Benzos are on it. Antidepressants. Mood regulators. Opioids. Beta blockers. Headache drugs. When the headaches worsened, steroids. For anxiety, the antihistamine Vistaril. The list goes on.

At one point, meeting with her psychiatrist, she tells him: “I feel like a chemical waste dump.” After explaining why, he instructs her to hang on. After telling him she’s sick of being told to hang on while “all of the ECT, all of the pills” fail to help her, he puts her on Depakote. Yet another pill. Of course.

These and other interactions with psychiatry are equal parts infuriating and heart-wrenching. So are accounts of her ex-husband’s emotional abuse as he angrily disparaged, even mocked, her struggles and informed her she’d never be well. Such tales draw out the injustice and futility in pathologizing and medicating human experience, and the need—the imperative—to listen to that experience with curiosity and compassion.

Bracken found the latter, at last, with an energy healer who eased her pain and helped her taper. She ends her book with a call for change, making the case for fully informed consent: At the very least, doctors need to be genuine sources of drug information for their patients. “And we must demand it,” she writes.

*****

Misogyny in Psychoanalysis by Michaela Chamberlain (Phoenix Publishing House)

Psychoanalysis could sure use some psychoanalysis: That’s the chief takeaway from Chamberlain’s book, which is as adamant and inarguable as it is slim. She does not mince words in breaking down the mansplained misconstructions of womanhood that define the core tenets of Freudian psychoanalysis and influence practice and institutions to this day.  Even now, women too often feel unseen and unheard. (See Ann Bracken’s memoir, above.)

But naming a wrong, pointing at it and voicing outrage, is the first step in correcting it. Scriptures must be challenged, sometimes, with scrutiny. And this tiny book is one fiercely articulated rejoinder, a concise but complete critique of the assumptions behind the theorizing—and the male-dominated power structure that endures to this day.

“In all the groups I have been a part of, a divide has taken place between those who ‘get’ Freud and those who do not,” writes Chamberlain, reflecting on her years in the field. Finally, the reason for the divide became clear: “Rarely did the men find Freud off-putting or difficult to read, whilst the women would huddle to share notes and become anxious to make sense of the readings. It was at this point that it became apparent to me that I struggled with Freud because it was never written for me, it was written by a man for men.”

Consider the Oedipus complex and the associated concept of penis envy: For Freud and his followers, female sexual organs and psychology had built-in deficits. They simply weren’t enough. Women and girls were bound to feel incomplete, bound to feel castrated and frustrated, bound to yearn for something they never had. From the start, Chamberlain explains, Freud considered it “almost a ‘no go’ area for disagreement,” shunting aside any and all dissenting voices—female analysts included—from his inner circle.

Chamberlain, a UK-trained and -based psychoanalyst, doesn’t limit her arguments to theory: At various points, she delves into feminist performance art (Marina Abramović’s “Rhythm 0”) and music (Cardi B and Megan Thee Stallion’s “WAP”) that highlight and challenge misogynistic norms. Her aim is broad, her examples bold, and the general readership will grasp every point she makes. But the author wants her colleagues to grasp them, too—with the understanding that most women who point out misogyny in the ranks are eventually, inevitably discounted.

Because of what? Misogyny. It’s a closed loop, and generationally ingrained habits in how women are seen or not, how they’re heard or not, are tough to shake.

“There is something shameful in the history of psychoanalysis which needs to be acknowledged. But it seems that there is a paralysis in this move to acknowledgement, as the real shame is in the fact that the misogyny is not historical, it is present,” she writes, “and holds back true development. . . . It feels that psychoanalysis is caught in that same loop of repetition, too afraid to allow itself to be properly analysed and live with that part of itself.” Psychoanalysis is, as a result, a “boys club” that “maintains the benefits of white middle-class male privilege.”

The baseline question that needs to be asked: Why? Why hasn’t the contemporary practice of psychoanalysis “stepped outside its comfort zone and addressed its own insecurity? Rather than hiving off gender and sexual equality as a specialist subject, psychoanalysis needs to address its own misogyny.”

Let the shrinking begin.

*****

Madness: A Philosophical Exploration by Justin Garson (Oxford University Press)

Is someone whose thoughts and feelings take a strange turn deranged and disordered? Or are they instituting some tactic, some way forward, on their quest to make do and find meaning? Is there a reason behind their madness? Is there perhaps some innate design?

These are, quite literally, questions for the ages, and Garson tackles them all—and more—with a thoroughness, a calm and inclusive meticulousness, that impresses while it persuades. As he explains from the outset and unpacks at length, conceptions of madness mostly fall into one of two broad philosophical camps. On one side, madness is viewed through the lens of teleology—that is, as having purpose. On the other, it’s seen through the lens of dysteleology—that is, lacking purpose.

Madness covers several millennia’s worth of examples, from the mages, magicians, and Christians who considered madness an act of the gods or God; to the followers of Hippocrates, who blamed some clogged airflow or malfunctioning humor; to Kant, who saw failures in mental faculties; to Freud, who saw subliminal intent; to 19th-century physician Arthur Wigan, who considered the mind as dual and madness as inherent; to others who saw striving, problem-solving, and flights from a painful world; to the Diagnostic and Statistical Manual and the mid-20th-century shift from dysteleology to teleology; to the emergence of Darwinian medicine, which can view madness as both evolutionary disorder and adaptation.

To be clear: The above distillation barely scratches the surface of Garson’s book. On the topic of madness there are endless takes, expostulations, and theories, far too many to tick off here. As the author says in his own introduction, “An overview of this sort is bound to be far too condensed, too abbreviated, to serve as a working road map.”

But his intro sets the tone for the book that follows, which serves as both a deep-dive history of changing attitudes and a call to consider that history, and those attitudes, as dissenting schools of thought. Either madness makes sense, or it’s senseless. Either the mad are purposeful, or they’re patients. Either depression, anxiety, and psychosis serve a function—some coping mechanism, some watchfulness against uncertainty, some flight from a devastating world—or they need to be fixed. Corrected. Treated. In a pharma model, medicated.

Garson, a professor of philosophy at Hunter College and the City University of New York’s Graduate Center, is also the author of The Biological Mind: A Philosophical Introduction and other works exploring the intersections of brain and body. His new volume is a bit of an investment, retailing for around $60 (paper copy) or $55 (ebook), not abnormal for chunky tomes aimed primarily at academia. Which is a shame, because Garson’s book is wholly get-able. It’s also wholly relevant for anyone concerned about the disease paradigm and curious about the twists in thinking that brought us here.

In his epilogue, the author ponders another massive philosophical pickle: Are we actually mad by default? Cycling back to Wigan’s view of madness as unremarkable for a divided brain, Garson wonders whether “sanity itself is a thing that is surprising and remarkable”—the exception to the rule.

“The starting point for future philosophical inquiry,” he concludes, “is not: what is madness? What shall we compare it to? But rather: what is sanity? What shall we compare it to?”

Yet more questions for the ages. I look forward to reading his answers.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Books Under Review: Fall 2022 appeared first on Mad In America.

“I want that!” he shouted. She said she would hold it while they solved the problem—and right then, “he grabbed the necklace. And it broke. And he looked at me. He was so mad,” she says, “and he hauled off and hit me.”

The blow wasn’t anything major—only a toddler’s slap. “It didn’t hurt. It was more that it hurt my pride.” Still, he had smacked her, a violent move that in so many other circumstances, in so many other schools, would have led to some form of immediate and unequivocal punishment—likely followed by a close and potentially clinical assessment of his intensity. Especially if it was followed by further bouts of acting out. Especially if the child were tagged as disruptive, even disordered.

But not at North City Cooperative Preschool, a nonprofit run in conjunction with nearby Shoreline Community College that incorporates the Nurtured Heart Approach (NHA)—a paradigmatically different model for coping with challenging behavior that Childs had just adopted and started to incorporate in her own classroom. Telling the story these years later, she knows her response wasn’t perfect. Initially she called him “bad” for hitting her, and she shouldn’t have. She had just been trained in the NHA and she was, she says, still working at it.

But Childs took a breath—thank goodness she had one, she says. She dialed herself down. Instead of punishing him, she pointed out what he was doing right. She told the child, no, it wasn’t okay to hit, but he had stopped. He was already cooling off. “Look at you,” she said.  “You were so angry a minute ago. You hit me! But now I see you taking a big breath. I see you coming back to center, and you look like you’re about to solve this problem.”

The boy, wanting nothing of it, told her—begged her, really—to take him out into the hallway. She said no, they would handle it right there. “He said, ‘Call my mom! Call my mom!’ And I said, ‘We can call her in a minute, but you seem to be calming down and feeling better and better.’”

Finally, he gave up and said “okay.” “And to me that was just such a telling, magical moment,” Childs says. It became “one of my favorite examples of the power of Nurtured Heart.”

Childs is director, lead teacher, and parent educator at the preschool, which serves children aged 1 to 5. She’s also an advanced trainer in the NHA and a parent educator with the co-op school, bringing families into the loop with an approach that asks parents and teachers alike to drop every preconceived notion they have about what to do with troublesome behavior.

Indeed, those who aren’t familiar with the Nurtured Heart Approach—and that would be most people—might hear her story and think, “Wait, what? No punishment for that kid? The teacher just told him to breathe and then wound up praising him?” They might be even more surprised to learn that such stories are, in fact, standard operating procedure for schools and other settings that incorporate Nurtured Heart.

In a world increasingly bent on labeling children of high intensity with Attention deficit hyperactivity disorder (ADHD) and trying to mute that intensity with drugs, Nurtured Heart takes an entirely different tack. When kids act out, they’re encouraged to “reset.” When they do something positive, they’re recognized, but not with a boring, generic “nice job.” NHA affirmation is specific by design, pinpointing an example of generosity, kindness, courage, creativity, cooperation, or some other “greatness” in a manner making it likelier they’ll repeat that behavior in the future.

The result: Good stuff gets the energy and attention from others. Negative stuff doesn’t. In turn, the child’s intensity gets rerouted toward the good, reinforcing the novel concept that, hey, guess what, grownups might actually notice you, even lavish you with attention, for something besides challenging behavior. Intensity in and of itself isn’t a bad thing, isn’t a wrong thing, isn’t a cause for correction. It’s something to be acknowledged, even celebrated. It just needs to be nudged in a positive direction, and there it can blossom. There it can take the hot-wired spirit that can get a lot of kids in trouble—getting a subset diagnosed—and channel its energy in another direction.

“We’re all in the same boat. We all have intensity—it’s not just those kids,” says Howard Glasser, creator of the Nurtured Heart Approach, director of the Nurtured Heart Institute, founder of the former Children’s Success Foundation, and author of such books as Transforming the Difficult Child: The Nurtured Heart Approach.

“I want to build their inner strength,” he says. If a kid has strong feelings? Instead of taking a severe or corrective tack, say: “Regardless of these strong feelings—yes, you’re mad at me—here’s you handling being mad really well.”

“So it’s not about making intensity and worry and strong feelings go away,” he adds. Instead, it’s about using them as an occasion to recognize what they’re doing right.

Absolute no, absolute yes, absolute clear

Glasser is on the phone from Arizona, reflecting on the Nurtured Heart Approach roughly a quarter-century after first developing it. Its reach now extends into India; its practitioners include therapists, other clinicians, teachers of various grades, school counselors, administrators, parents; its philosophies and tools are being adopted in New Jersey public schools through a new state-funded program (Developing Resiliency with Engaging Approaches to Maximize Success, or DREAMS) that offers training in Nurtured Heart to districts across the state.

He realizes the message and tenets of NHA represent a massive shift in thinking—about schooling, about children and how to raise them, about how we regard those with intensity, about the medical model pathologizing them. Instead of something to punish and quash, intensity is something to reroute and engage in positive behavior. Instead of seeing bouts of acting-out as occasions for discipline and markers, potentially, for diagnosis and drugging, Nurtured Heart frames them as opportunities to encourage self-regulation in a neutral manner.

And that neutrality, according to those who practice it, is critical. Going back to Childs’ story of the little boy and the broken necklace: In a pre-NHA scenario, a teacher might have taken the child into the hallway to “help him regulate, and bring him down.”

From the kid’s perspective, that’s golden. “You’re getting all this juicy energy from what went wrong,” Childs said. Focusing instead on what’s right—“it is hard work,” she says. “But it touches my passion, because that child? They call it the preschool-to-prison pipeline. Starting in preschool, we are telling them how awful they are, how horrible they are, how they don’t belong. . . and I am absolutely committed to breaking that cycle. You do belong. You do belong, and this is why. I’m gonna show you, and I’m gonna show your parents.”

Often described as a “three-legged table,” the NHA rests on a trio of basic “stands.” As The Nurtured Heart Institute explains on its website, laying them out in non-negotiable all-caps, they are:

ABSOLUTELY NO! . . . I refuse to give my time, energy and relationship to negative behavior. I will not accidentally foster failure nor will I reward problems by responding to them in animated ways. I will save my time and energy for searching for success.

ABSOLUTELY YES! I will relentlessly and strategically pull the child into new patterns of success. I will constantly recognize the success and achievement that children are displaying no matter how small and present them with clear undeniable evidence of their value and how great they are.

ABSOLUTELY CLEAR! I will have clear and consistent consequences for children when a rule has been broken. “Here are the rules, and here’s what happens when you break a rule.”

That final stand, the clear one, requires a full understanding of what those rules are; in a classroom, they tend to be delineated plainly, in everyday ways and terms that the child will grasp and internalize. Then, when a rule is broken, a non-punitive, non-emotional, non-energized consequence occurs, and the child gets a reset. A redo. A chance to calm down, get back to center, start over. This is distinct from timeouts, particularly those that are issued as flat-out punishments with no attempt to emphasize other, more positive, behaviors.

After all, why would a kid want to avoid any bad behavior, if it gets a rise out of the adults in the room? If it prompts a parent or teacher to drop everything and escort them into a hallway, a corner, a seat somewhere for designated rule-breakers? Glasser, who’s fond of analogies and metaphors, has referred to grownups as “children’s favorite toys,” a comparison he explains at length in his preface to 2007’s The Inner Wealth Initiative: The Nurtured Heart Approach for Educators (co-written with Tom Grove and Melissa Lynn).

We’re loaded with features and we’re animated, reactive, and interactive. We also have the best remote control ever made. In addition to our ability to walk, talk, skip, dance, wax poetic, make faces, and do just about anything else under the sun, we can display a multitude of fascinating emotions and moods in a virtually infinite number of combinations, subtleties, and gradations. . . . No other “toy” could possibly compete.

So kids love pushing our many buttons, and will do almost anything to wind us up.

Another metaphor: In other writings and comments, he’s compared the notion of the reset to the forgiving nature of video games, which let the player make a fresh start after the most disastrous of turns. As he explained in both a recent Mad in America column and a podcast interview, heads can literally roll in a session gone horribly, graphically, almost comically wrong, and yet the person at the controls is allowed to restart. Rules are clear; rewards and consequences are obvious; resets are the norm.

“It’s the furthest thing from punishment,” he says. “So, game in, game on. . . . The kid wants to be back in the game.” And wants to be working hard for rewards.

Working together, and learning a new way to talk

A third metaphor, this one based on Glasser’s personal backstory, dates back to his 15 years in woodworking—more on that later—and his appreciation for structure. At one point, he worked at reconstructing an old farmhouse and barn. Say you’re working on the walls, he says. You need all of them, upright and aligned, to keep the building steady. If one of them isn’t quite right, the whole thing wobbles.

You need to level them with cables, but you can’t work the cables all at once. “Instead, you would crank the tension of all those cables little by little to get it to square, and get it to stable. And that’s kind of what we’re doing with the three stands.”

That is, he says, how Nurtured Heart’s three stands work: together. Aligning them takes time, patience, and attention to detail—and it helps when parents as well as teachers are active participants, learning to adjust the cables in their children and themselves.

In Washington State, the seven co-op preschools run by Shoreline Community College’s Parenting Education Program include two that incorporate the NHA approach with instructors who are also certified or advanced trainers. One is North City Cooperative Preschool, north of Seattle; the other is Crystal Springs Co-op Preschool, to the west.

At both, parents are active participants, taking introductory and smaller, ongoing classes in Nurtured Heart and regularly assisting teachers in school. The idea is to familiarize parents with the approach and help families get acquainted with a whole new set of ideas, a whole new way to cope with challenging behaviors—e.g., have they been inadvertently energizing a child who refuses to go to bed at night?—and a whole new set of verbiage. Words like “integrity,” “cooperation,” “collaboration” (not to mention “reset”) can take time to internalize and put into practice.

“I think most people who are motivated find their way through the language barrier,” Glasser says. Adds Dorothy Anderson, director and instructor at the Crystal Springs preschool: “It’s a different way to talk. It’s a different way of communicating. And sometimes, you know, people go, ‘Well, I don’t—I can’t say that.’ And I’m like, ‘Well, you have your own way to say it, and you don’t have to say it the way I say it. Because your child’s going to know that authenticity in your face.’”

Fortunately, children are sponges—and the younger they are, the more open and flexible they are. “They are soaking it in, they are listening, they are watching, we are modeling it,” says Anderson. “And as we model it, the younger ones—they’re just taking it in.”

In Anderson’s class, the kids range from 1 to 5. With the one-year-olds, the NHA lessons and language occur with the parents: What to do when their wee one is having a tantrum, for instance, or how to guide them into a reset. But by age 2, those same wee ones “already have heard the verbiage,” and they’re starting to use it themselves.

Recently, one such toddler was having a hard time, crying. But her older sister had just graduated from Anderson’s preschool class, so “she’s been hearing the verbiage”—and she knew what it meant. “I was able to say, ‘Look at your greatness and bravery. Look at how you calmed your body down. . . . So, how do we calm our body down? Let’s see. Can you take deep breaths?’”

She could. And she did.

But as anyone knows who has ever been or encountered a child, not all of them are alike. As with any modality, in any setting, using any vocabulary, their responses are inevitably diverse. “It’s not formulaic, in that you’re gonna read a bible on how to do these three stands. . . . It’s not like that,” Glasser says. “You’re a unique person, with unique features and a unique life, and you’re a unique kid—and you’re going to bring these stands to life in your own way.”

As a result, “A reset looks different for all kids,” Anderson says. The solution is communication—and an openness to playing by ear. “Like I’ll say, ‘Let’s breathe’—and a child will say, ‘I don’t want to breathe.’” Hmmm. So what then? The teacher explains to the child that soothing herself matters more than the breathing itself. How would the child like to reset? “I want to count.” So she counts—to five, then to 10, calmer at the last number she was at the first.

Bingo: reset.

“And I say, ‘Okay, so I notice you want to count when you reset. And so when we say ‘reset,’ what are you gonna do when your body’s feeling like it needs to reset? What are you gonna do? Count? Great.”

The usual approach: labels, drugs, and definitions of okay versus not-okay

In ways both large and small, the messages built into Nurtured Heart require a big pivot—rethinking both the response to a kid’s misbehavior in the moment and, beyond that, the entire, binary view of hardline child rearing and a cultural emphasis on obedient children versus disobedient, successes versus failures, goody two-shoes versus troublemakers.

And one more: Ordered children versus disordered. Any system based on kindness and affirmation is already unusual, but the NHA challenges the entire, existing characterization of childhood intensity as a problem insoluble, even incomprehensible, without diagnosis and treatment. The US Centers for Disease Control and Prevention (CDC), citing a 2016-2019 national survey of parents, now puts the number of 3- to 17-year-olds ever diagnosed with ADHD at an estimated 6 million, or 9.8%. Of that, around 265,000, or 2%, are 3- to 5-year-olds. Two point four million, or 10%, are aged 6 to 11. Boys are likelier to be diagnosed than girls.

As the CDC also highlights, those numbers represent a considerable increase since 2003, when roughly 4.4 million children aged 3 to 17 had been diagnosed, at some point, with ADHD. And of the children now being diagnosed, most of them are drugged: A 2016 national parent survey reported 62% of children with the diagnosis are being medicated; that figure includes 18% of 2- to 5-year-olds and 69% of 6- to 11-year-olds.

And yet, according to a recent study from researchers at Florida International University—which cites an even larger number, 90%, for the percentage of such kids being medicated—such diagnoses and drugging have not been shown to improve academic achievement in schools, which have simultaneously ramped up an emphasis on testing while the ADHD diagnosis and medication of children increased. Additionally, in an even more recent study, researchers found that children diagnosed with ADHD had worse quality-of-life outcomes—and were likelier to self-harm—than children who had the same symptoms but were not diagnosed.

Nor does the pathologization of childhood end there. Beyond ADHD, the DSM’s listings of childhood mental disorders include anxiety, depression, post-traumatic stress disorder, oppositional defiant disorder, obsessive-compulsive disorder, and conduct disorder—which first showed up in DSM-IV in 1994. Its fifth edition added two more: social communication disorder and disruptive mood dysregulation disorder.

Labeling doesn’t stop with the DSM, either: Consider the DC: 0-5 Diagnostic Classification of Mental Health and Developmental Disorders in Infancy and Early Childhood, published by the child-development professional organization Zero to Three. Many of its disorders align with the DSM’s and the International Classification of Diseases (ICD), including “selective mutism disorder,” which pinpoints a child’s fear of talking and drawing attention.

Others are more specific to the Zero to Three classifications, such as “inhibition to novelty disorder,” which roughly aligns with the DSM’s “other specified anxiety disorder” (i.e., a label for those who don’t have enough symptoms to be diagnosed with another anxiety disorder). According to Zero to Three, this new label, introduced in the fifth edition, “defines extremes of behavioral inhibition that impair the infant’s/young child’s functioning. Infants and young children with this disorder show an overall and pervasive difficulty approaching new situations, toys, activities, and persons and experience impairing levels of distress.”

Another label found only in the Zero to Three manual: “Excessive crying disorder.”

Sometimes used as an adjunct to the DSM and ICD, the manual has been published and republished in multiple languages through five editions—and it further whittles down the idea of non-disordered childhood behavior to a slimmer and slimmer concept.

“It’s concerning to me that we are creating scales where you point to this narrow definition of what’s okay and not okay,” says Alyson Schafer, a family counselor, parenting expert and author who has written about the over-pathologization of childhood. For parents, such labels might ease the sense that they’ve somehow failed their children: “There’s this need to feel like there’s an explanation outside our control,” she says. That, in turn, “really narrows the range of how happy should a child be, how much should a child cry.”

Or talk. What about a kid who’s reluctant to speak? Maybe, she says, they have older siblings who tend to do all the talking. Maybe they’re taking their time, observing everything, waiting things out. Such differences among children aren’t new; what’s new is the urge to stamp them as disordered.

“Humans haven’t changed, but our ability to diagnose them as sick has greatly grown, and this need to classify comes more from the medical model.” She prefers the wider view, the philosophical view, in considering the creativity of human beings to respond to and manage their environments. “What is it to be a person? What is it to be whole? . . . How do they function, and where do they fall down?”

In her own practice, she sees children on one drug who wind up on several, and the polypharmacy never helps. “It makes things worse,” she says. “Not better.” Beyond that, “I don’t need a book to tell me that you’re moving along at a human growth and development arc—for yourself. And we want people to move along in a healthy, pro-social way.”

“Where am I looking?” A whole-school, whole-life outlook

In the history of education and in the habits of parenting, a healthy, pro-social way hasn’t always been top priority. In most schools across the country, there’s an “algorithm of managing kids,” says Mila Schneiderman, co-founder and co-director of the Oholei Yosef Yitzchok Lubavitch pre-k and elementary school in Brooklyn.

That usual algorithm prioritizes testing, schoolwork, and conformity, and rewards children who mesh with the system. If a kid doesn’t fit in, “They’re either gonna be constantly punished or they just won’t care.” They’ll tune out. “They’ll do their own thing. So we’re really creating this nurturing school setting where children really get nurtured—beyond just the academics.” That, she says, was the goal.

Schneiderman created and runs the school with her husband, Rabbi Mottel Schneiderman, within the Chabad tradition. Now in its 13th year, the school was not part of Nurtured Heart from the beginning—that came later. A special-education teacher and mother of eight, Schneiderman had worked in various other schools before deciding, with her husband, to create their own. What stood out to her, as an educator, was the huge variation in rules and culture from classroom to classroom, “because it’s really dependent on who was the teacher in that particular grade.”

One teacher might have the kids earn points and win prizes, another might not. “Even within one school, it was like every classroom had its own culture. It was every classroom as its own country. . . and it really bothered me,” she says. At home with her own children, she wanted more consistency and clarity, a priority that carried over to the school. She wanted a “universal” approach—and not only for her own kids.

“So when we opened the school, we wanted to get a unified approach regardless of who the teacher is.” The culture wouldn’t be classroom specific; it would pervade the school, ground up. “And the children, they grow into the culture. . . . They grow into it. They know exactly what to expect.”

After exploring the options, Oholei Yosef Yitzchok tried using other approaches and techniques for a couple of years, but they didn’t quite stick. “Teachers would come up to me very often and say, ‘I said exactly what needs to be said—and it didn’t work.’ And I remember mentioning, ‘Yeah, but you need to speak from your heart.’ And I’m thinking to myself, ‘How can they speak from the heart?’”

The approach didn’t teach that. The NHA did. In July of 2021, they all went through the training, and right away, she noticed a difference. “It was very interesting. As director, I really felt that I didn’t have kids in my office any more”—because so many of the disciplinary issues that previously ended up there were resolved, instead, in the classroom. Not all of them, “but I would say like 80 percent. Which is huge, in my opinion.”

Leah Goldshtein, educational director at the school, describes the transformation of just one boy with challenging behavior. He would sometimes get violent, throwing chairs. A table, even. But every time he did something helpful, she recognized it with a compliment—“You opened the door without my asking”—and he showered them back. His behavior began to change, she says. “This image of a violent kid is disappearing.” His parents are observing the shift at home.

As a result of all this, the boy is seen differently: Not as a trouble-maker but, well, as a boy. Period. “He becomes a human being,” Goldshtein says.

Schneiderman describes a similar, broader transformation in how everything and everyone is perceived. Since adopting Nurtured Heart, the entire school setting has taken on a different vibe, a “milder” one. The community has swiveled in its priorities, its perspective, its consciousness—“from noticing what is working out versus what’s not working out. So I think this is the core of the Nurtured Heart Approach. It’s Where am I looking?”

On Dec. 26, Schneiderman and Goldshtein—both Nurtured Heart trainers—will offer a free introductory workshop for NHA-curious parents, with the option for further sessions. But even without training, the hope is that Nurtured Heart will seep naturally into different facets of school and home life.

“It’s a whole-school outlook. It’s also a whole-life outlook,” Schneiderman says. “We really needed to change, to focus on ‘how much I do have?’ versus ‘how much I don’t have.’ And by focusing on that, you actually attract more of what you focus on.”

Flipping the dynamics, and learning how to love an intense child

Growing up in the 1950s, Howard Glasser was one of those kids who didn’t fit in. He was smart. He was funny. But no one knew what to do with him—and, just like one of the children Scheiderman was describing, he tuned out. He didn’t find a niche at home or at school, and had the diagnostic paradigm been in place, he might have ended up on Ritalin with a diagnosis of ADHD. Not might have. Would have. As it was, his teachers and parents responded as most parents did in those days, in punitive ways, and he lacked support. He also lacked a sense of being comprehended and valued for who he was.

If only Nurtured Heart had been around back then, he says. “Man, it’s what I would have liked. It’s how I would have liked to have been seen, and heard, and appreciated—and I have no doubt that I would have responded well. I have a sense that I would have been super-responsive to being empowered, and it probably would have set me on track early in life.”

Instead, he pulled himself up by his bootstraps—or not. “I don’t know if that’s what I did. I think I just got lucky. . . . I think there’s a lot of grace involved. I just feel very fortunate I made it.”

Glasser knows he’s not alone. Many kids grow up in similarly difficult circumstances, with a similar sense of rebellion, of fighting, that barrel them along—only these days, children as young as 2 are being labeled and drugged, and the diagnostic model of mental and emotional distress continues to sprawl. Look at all the emphasis, these days, on blanket depression and anxiety screenings. “My belief is pharmaceutical companies would like nothing better,” he says, “than ‘no child left behind.’”

Glasser’s professional backstory, full of twists and turns, began with an interest in psychology—which he first studied as an undergrad at City College in Manhattan and later as a graduate student at New York University. After earning his master’s in counseling, he started in on a Ph.D., but eventually withdrew to focus on woodworking, making cabinets, furniture, and sculpture (a journey he describes at length in a 2014 Esquire article on “The Drugging of the American Boy”).

After a decade and a half, he moved to Arizona and worked as a therapist, tapping his own childhood experiences as he helped families with intense children too often labeled with ADHD. He saw what didn’t work in the existing methods, and he experimented with different tactics to find what might—often guided by observations and insights that would hit him, whether suddenly or gradually, and then not leave him alone.

One was this revelation, which he articulated in The Inner Wealth Initiative: “We adults have far more captivating, energized, animated responses to children when there is adversity. Adults tend to be more tuned-in when things are going wrong, displaying more emotion, discussion, relationship, intimacy, and presence.”

His idea: Flip the dynamics. Take the energy being thrown at—rewarding, enticing, compounding—negative behaviors and focus, instead, on the positive ones. The results were so striking, helping so many kids with ADHD, that Glasser was asked to speak and share his methods publicly. In the mid-1990s, he and likeminded clinicians launched the Tucson Center for the Difficult Child, where the new approach was gradually developed.

In 1999, he and coauthor Jennifer Easley published Transforming the Difficult Child: The Nurtured Heart Approach, which became the top-selling book on ADHD. He went on to write, co-write, or contribute to 14 more volumes, including the Inner Wealth book and 2005’s 101 Reasons to Avoid Ritalin Like the Plague. He now teaches at the University of Arizona, speaks around the world, consults in different capacities, and is widely regarded as one of the earliest and most influential voices challenging the prevailing diagnostic approach to high-energy children.

But Nurtured Heart emerged gradually, he says. None of it was sudden. “This approach was like getting a letter in the mail day by day by day—or building a house. ‘Here’s a brick. Here’s another brick.’ I didn’t get a truckload at a time,” he says. “So, you know, the fact that this amounted to an approach that eventually had a name and became potable. . . transportable. That’s mind blowing to me. And the fact that it keeps going is mind-blowing.”

And while he’s not close with his family, he says, he’s forgiven them. “I know they love me dearly, they just had no idea how to love me. . . and I want to spare people that experience. You know, part of my passion is I want people to have that better experience. I want that counter-cultural revolution so people can have that better life.”  He wants intense kids to grow up with parents who know how to love them.

Emphasizing the affirmative, but no “Pollyanna-ish pretending”

Back in 1944, Bing Crosby and the Andrews Sisters recorded a Harold Arlen-Johnny Mercer song, “Ac-Cent-Tchu-Ate the Positive,” that famously, swingingly extols the benefits of seeing the bright side.

You got to ac-cent-tchu-ate the positive
E-lim-i-nate the negative
And latch on to the affirmative
Don’t mess with Mr. In-between
You got to spread joy up to the maximum
Bring gloom down to the minimum
And have faith, or pandemonium
Liable to walk upon the scene…

Oh, listen to me children and-a you will hear
About the eliminatin’ of the negative
And the accent on the positive
And gather ’round me children if you’re willin’
And sit tight while I start reviewin’
The attitude of doin’ right

But as those who teach and practice Nurtured Heart repeatedly point out, inner wealth is more than self-esteem. The quest for it, the accumulation of it, requires more than simply “accentuating the positive.” It isn’t about being peppy for peppiness’ sake, or walking around with eyes shut and a fixed grin while the floor collapses into a pit of flames beneath you. It requires, most of all, attention to reality in its fullness.

“I kind of wince a tiny bit when I think of Nurtured Heart as a positive approach. You know, it’s actually born out of negativity. It’s predicated on energies of all sorts,” Glasser says. And yes, he adds, it really does strive to convert challenging energies into more positive energies. “So it is a positive approach in its form.”

But too often, “The danger of positive approaches can be that Pollyanna-ish pretending that you don’t see negativity.” That’s not the case with the NHA: A reset requires being aware of some line that’s been crossed—“what it sparks in us, what it triggers.”

The whole concept of “inner wealth” is based not on a blind emphasis on what’s right, but an understanding of one’s successes in the context and complexity of real-world challenges—for everyone, not just for challenging kids. In 2007, Glasser called it “a multifaceted inner experience of our greatness and deeply connected to our feeling that we have meaning—that we are important just by virtue of being alive.” But that doesn’t mean ignoring reality.

“You’re not praising children—you’re just recognizing them for what they’re doing, and you’re honoring them. And so much of people’s day-to-day occurrences just go unnoticed,” says Elizabeth Rezayat, Childs’ teaching partner at the North City co-op school and mother of one child now enrolled there plus one graduate. The same is true for children, whose good stuff isn’t getting any energy. “This kid just got his shoes on. This kid just got his coat on. This kid just packed his backpack, and he’s ready to go—and you’re yelling at him,” Rezayat says, “because he forgot to brush his hair.”

The affirmation goes both ways. As Childs wrote in a follow-up email, “It is the children who have really blown me away. Not only do they love pointing to their own greatness, but they also want to point to everyone’s greatness, including adults.”

The North City school incorporates something called “The Greatness Chair,” inspired by a book of the same name by NHA-trained child psychiatrist Kathleen Friend. The colorful seats—Childs made two over the summer, one for each classroom—explode with words like “brave,” “patient,” “flexible,” “empathetic,” “welcoming,” and “tenacious,” mainly gathered from Glasser’s NH list of “Emotionally Nutritious” words. Greatness chairs serve as cheerful substitutes for the standard, gloomy piece of classroom furniture filling the standard, gloomy disciplinary role: they’re the opposite of time-out chairs.

Anyone can sit in them—and when they do, “You either exclaim your own greatness, or somebody else is going to tell you about your greatness. So I’m excited about implementing those, because it’s more concrete for the littles.”

Among those happy to take a seat is Rezayat’s daughter, Zadie, who turns 4 in December. Recently, sitting in one of the chairs, she wore a pink shirt and a beaming look of contentment as Rezayat snapped her photo.

“Hey Zadie,” Childs asked her, “want to tell me about your greatness?”

“At night my mom cuddles me, and I cuddle her back.”

“You are the greatness of giving and receiving love.”

“Yup.”

Of the chairs, Rezayat says, “They’re absolutely beautiful.” The positive messaging was glued on with permanent sealant, so “those words are there to stay. And every single person, adults included, who sit in that chair, either intentionally or unintentionally, really get their cups filled.”

Outside the greatness chair, kids can do something that’s a complete disaster—and still, there are positives to be gleaned and recognized. Take the child who “tidies” her room by trying to cram some giant heaping mess into a closet. Rezayat’s NHA response: “Oh my gosh! You cleaned your entire room. Wow. Wow. I see you have a hard time closing the closet door—would you like some help organizing?”

As she says this, she’s laughing hard. This is how parenting goes. How teaching goes. How growing up goes—and, for that matter, life itself. The Nurtured Heart approach “can change everything in an instant,” she says. “And it’s up to us educators and parents—it’s up to us—to really use that and help our kids through tricky situations. . . and make sure that we are empowering them with love and lessons.”

Crunching the numbers, seeing the effects

All of this begs an obvious question: Does Nurtured Heart work? Research is being conducted by New Mexico State University, the University of Arizona, and Rutgers University (a collaborator on the New Jersey DREAMS project). But according to the numbers so far, yes, it does. It works in homes; it works in schools.

First, homes:

In “The Online Nurtured Heart Approach to Parenting: A Randomized Study to Improve ADHD Behaviors in Children Ages 6–8,” published in the April 2020 issue of Ethical Human Psychology and Psychiatry, the authors—Glasser included—found that children diagnosed with ADHD whose parents went through a six-week online NHA training saw a decrease in hyperactivity/impulsivity compared to the control group. They concluded, “The study provides preliminary data of the NHA’s potential to improve ADHD related behaviors.” Discussing the clinical implications, they added: “The NHA showed improvement by training parents, rather than a direct child-focused treatment approach, and thus could be diffused throughout the family, potentially yielding benefits for other children within the household.”

Past research into the NHA and its impact on parents and children “is limited, but promising,” the authors state. Among the previous studies cited is one from 1997, when mothers who engaged in an NHA intervention reported improved parenting skills and lower stress and depression; for their children, they reported improved behavior and lessened anxiety. It also notes a 2015 study of 326 parents who had gone through NHA courses, 94 who had not, in which the former group reported more positive attention to their child, less yelling, and less scolding.

In 2018, Sara E. Roth concluded a secondary data analysis of 219 NHA parents and 100 control parents, finding upticks in the NHA group’s confidence as well as perceptions of their children’s strengths. “NHA is a promising intervention for parents. . . . Parenting programs such as the NHA are important, since prevention is key,” she writes. “It is imperative that there be more opportunities to provide parents with the positive parenting inherent in the NHA program that allows them to confidently and competently parent their children from a young age in a way that allows for the positivity in the parent-child relationship to be primary rather than resorting to negativity.”

Second, schools:

In his preface to The Inner Wealth Initiative, Glasser describes Tolson Elementary in Tucson, Arizona—the first school to incorporate Nurtured Heart—and the dramatic shifts seen over seven years. Serving a predominantly poor and disadvantaged population, Tolson had, pre-NHA, the highest rate of suspension among 60 district schools. Annual teacher attrition was over 50 percent. Fifteen percent of students used special-education services; after adopting the NHA, that number shrank to fewer than 2%.

The book’s introduction lays out more of the changes seen with Nurtured Heart:

Since the Nurtured Heart Approach became integrated into the school’s classrooms, Tolson has had only one student suspended; no referrals to the juvenile justice system; no bullying; dramatic decreases in referrals for special education; no referrals for ADHD evaluations; and no new children on ADHD medications. Teacher attrition also fell dramatically. And Tolson’s standardized test scores have risen dramatically.

Granted, that’s just one school. But it was the first. And in the years since, the Nurtured Heart Approach has been adopted in a wide range of schools and settings, including those involved in the New Jersey DREAMS program’s pilot effort.

In a video showcase packed with interviews and clips from classrooms at participating schools, educators talk about the effects of NHA on their students and themselves—and students are shown taking part in Nurtured Heart projects designed to recognize their own and others’ greatness. We see photos of boards emblazoned with positive messages. We see pictures drawn by kids with self-affirming statements.

“You know, it feels good,” says Carlos Navas, a social worker at New Jersey Global Charter School, in the showcase. Anyone in the community can do something positive, “and all of a sudden you see somebody just pointing it out—like, ‘ Wow. What you did was amazing. As a matter of fact, everybody stop what they’re doing. Let’s clap it up. What this person did was great.’”

Not just students need it, he says. So do parents. Everyone could use the affirmation when things go well and the reset when they don’t.

“We all need a new beginning at one point in our life,” he says. “So do our students. They need a new beginning maybe five times a day.”

Helping kids before they’re “put in a box”

At North City, Rezayat teaches the “Busy Ones” (1-2 year olds), the “Rising Stars” (2-3), and a multi-age class. Childs oversees the preschoolers, aka the “Super Heroes.” Among them is Amy Dacuag’s daughter, Luna, who just turned 4. She’s a newcomer to the North City and to the Nurtured Heart Approach, but already, Childs said, she’s talking about her own greatness in school and at home.

Luna’s mom first heard about the NHA on the Therapists Uncensored podcast. “My ears were perking up—‘Oh, that sounds awesome.’” What popped out at her: “Before you even get a child into a clinic for therapy, before they even get diagnosed with anything, parents can do this at home. And oftentimes, it can turn things around. You know, they’re not pathologized. And I really loved that,” Dacuag says, adding that she’s not anti-medication or anti-diagnosis. “But if you can do this first. . . it’s just going to really reduce those potential negative aspects of kids feeling like they’re being put in a box, or that something’s wrong with them.”

A few months after hearing the podcast, she brought her daughter to an open house at the North City school. When she learned that it followed the Nurtured Heart Approach, her response, once again: “Oh, that’s awesome.”

A music therapist and early childhood specialist who had worked in non-NHA co-op school before enrolling Luna at North City, she was already attuned to other learning and behavioral approaches before stumbling across the podcast—and she already had concerns about Luna’s older brother, Wesley. “He can get really escalated with his energy,” she says. Not always a meltdown or a tantrum, “but his voice can get really loud. His body can get kind of wild, and he can lose his spatial awareness.”

His intensity had issues, last year, with a “really old-school, really punitive” teacher who didn’t know what to do with him. It also sparked a not-very-productive conversation with a child therapist she was interviewing. “His big solution was parent education for me, and he kept talking about time-outs. And I’m like, really? That’s all you’ve got?”

Only a month into using Nurtured Heart at home, she already sees a change in her son—and this year, his new first-grade teacher is calling in with positive reports. For Dacuag personally, “It’s training my eye to notice the best in others, and also myself. And in my own kids.” When she zeroes in on what’s great and remarks on it, “It really changes the whole energy. And you can really see them growing into their best selves. . . . So I feel that this approach has come at a really good time for me and my family.”

They even have a greatness chair—and, yep, Wesley likes it.  A lot. All of it. Just ask him. His replies will have the succinctness of any 6-year-old quizzed over the phone by a random grownup.

What does he like about this new way of talking about himself, of sharing stories? “Greatness,” he says.

Does he feel good when he hears about it? “Yeah.”

His mom, providing a reportorial assist, asks him how he feels when his teacher emails her with positive updates, and how it compares to last year: thumbs up. Then she asks how he feels when an adult gets mad at him: thumbs down.

When he sits in the greatness chair, how does he feel? “It made me feel good.” Then mom asks about his own greatness: What is it? When Wesley doesn’t reply right away, Dacuag reminds him that he helps his sister when she’s sad, fetching her a blanket or other special things.

“Do you feel like that’s something that’s great about you?”

“Yeah. Uh-huh.”

“What does it show? It shows that you’re. . . you can say it out loud.”

“I’m kind,” Wesley says, and he skedaddles off the phone.

Candles in the darkness, and cause for hope

On the other side of the continent, at the Oholei Yosef Yitzchok school in Brooklyn, Goldshtein talks about all this: About the effects of NHA on how we see, and what we say, as we respond to others and ourselves. Like Glasser, she’s fond of metaphors, describing the approach as a new lens that gives everyone a fresh angle on greatness within and without.

With the smallest ones, their youth and openness helps. “Their mind is more pliable, and they accept it in a more sincere way. With an adult, it’s like the brain is already wired. Like, it’s hard-wired for adults—it’s much harder to accept and take it, to hear it. The kids are so pure, so soft, it comes to them almost right away.”

She turns to another metaphor: “With children, they accept it as a balm. It’s a balm for dry skin.” And another: “Let’s say that each compliment, each time you focus on the good through NHA, using the tools of NHA, that’s another candle in a super-dark room. And the more candles there are, the more light is in the room.”

Slowly, the darkness abates. But lighting all those candles—that doesn’t happen spontaneously, on its own. “It’s a lot of hard work . . . It’s not a quick fix,” she says. Nor is it a magic pill, to deploy the most common metaphor for the medicalized approach.

In society at large, Goldshtein says, so much is punitive. So much is predicated on what we’ve done wrong and demanding payment for it, like a parking ticket. “There are all kinds of fines and fees and punishments out there,” she says. But she takes hope from various movements afoot, whether it’s people working to save the planet or efforts promoting kindness. Focusing on the good, and being proactive in achieving it: That’s the way forward.

Others talk about hope, too. Glasser included.

“What gives me hope is this approach has a mind of its own. It’s out there,” he says. He’s at a point, now, where others could take the lead if he ever had to step aside—“I see that as a beautiful thing. That it’s perpetuating. That there are people who love this work and are out there teaching it—and so that gives me hope.

“And I think it’s probably a good thing, too, that the deck is stacked. The world is giving us very clear signs that ordinary approaches don’t work—and the world is kind of stressed and more tightly warped than ever. . . . The viability of this approach is probably stronger than ever. It came of age by way of these more intense people in general, and it got stronger by way of intensity.”

Glasser never expected any of this, way back when. He couldn’t have known his career would lead to his work with an Integrative Medicine Program at the University of Arizona, or the Transformational Wellness program with its School of Public Health. He couldn’t foresee the online certification trainings, the adoption of the NHA in so many settings, or the upcoming NHA “global summit” featuring speakers from around the country and the world.

Among them is Sandeep Aggarwal, a teacher at a high school in North Carolina who helped bring the approach to his native India, just one corner of the planet where NHA is expanding its reach—something else he couldn’t have predicted.

Exactly how many corners is pretty much impossible to nail down. Glasser has no hard numbers of therapists, schools, and other environments that employ Nurtured Heart—but points, for a start, to the roughly 600 school districts in the state of New Jersey with plans to implement the approach. “And that’s just New Jersey.” Beyond that, “You have a pretty enormous number. You have, say, 5,000, 10,000. I’d say worldwide there’s quite a few, tens of thousands, of mental health professionals, therapists. That would be my humble guess.”

Yet the culture at large—in the prevailing narrative, and in the stories we tell—is still a far cry from acceptance of intensity and affirmations of greatness. Dacuag, who’s been spreading the word among colleagues, friends, and family, wishes resets and recognition were the baseline habits of everyday life. “Yeah,” she says. “I feel like it’s kind of the key.”

Anderson agrees, seeing Nurtured Heart as “a bigger tool, if we can get it out there.” As she tells parents at her school in Crystal Springs, everyone can benefit from learning to reset. She uses it on herself all the time, especially when a child acts out, “screaming in my face, and literally pushing me.” Everyone has hard days. “We all have these abilities to flip our lid and be totally out of sorts.” To see and own our emotions—then step away, and “not let that emotion define me”—is everything, she says. That, and a community of like-minded people providing support. It helped her through COVID, and it helps her now.

Anderson calls this “that little seed of hope, right? That dot. Seeing the one dot of what’s right in a sea of wrong. It can give you enough hope,” she says, deploying her own metaphor, “to make it to the next day.”

Envisioning a world with inner-wealth “billionaires and trillionaires”

For children, that seed of hope can shape their lives. Within the current, pathologizing model, with more and more being diagnosed with ADHD, ODD, and other disorders—and more and more of them being medicated—too many kids are locked into boxes at an early age.

“Parents that have children that are labeled—I think they get stuck in that label,” Anderson says, “and I think this approach gives them the ability to go, yeah, they might learn differently. They might have these different characteristics. But they still need to be told their inner wealth. They still need to be in a classroom and hear how amazing they are. They still need to be in a class and not be focused on what they’re not doing—but focused on their greatness, of what’s going on in that moment. As opposed to always being told or always being labeled the ‘bad’ kid.”

Ultimately, Anderson says, Nurtured Heart “is empowering the child to handle their own body—handle their own emotions—in a way that gives them the identity of who they are.” This gives them a sense of agency and ownership, learning to express themselves in a way that’s safe for them and others—and, Anderson says, “still be authentic for who they are.”

Were that the prevailing model, everything would change. Howard Glasser can picture it.

“I’d love to see a school system, a district, that has no-to-low medications to prove the point. I’d love to contradict the notion that intensity is the enemy—that ‘ants in the pants,’ hyperactive, inattentive.” All the words that normally corral a diagnosis: “I would love to show that those are just sign points of a kid with a little more lifeforce. . . and actually, the more intensity they have, the more potential for greatness they have. I’m a fan of inner wealth. I’m convinced that every kid can be an inner-wealth billionaire. It’s not the one percent, you know?”

But the dream doesn’t end there. In his vision, he also pictures a whole town, a whole city, a whole region, a whole state, where the adults all have that sense of mission. Where they all consistently reflect to the kids the great qualities they see. Where the kids learn to build their own inner wealth, then more inner wealth, then more.  The more people have, the more they’re determined to spread their inner wealth and nurture it in others.

“That’s the world I want to live in,” he says. A world with “inner wealth billionaires and trillionaires,” all of them paying it forward.

That’s his vision of the future. Making a 180, looking back at the past, Glasser sees that the universe unfolded the way it was meant to. Almost with intent. Because of his experience growing up. Because he studied psychology. Because of his 15 years woodworking. Because of all those kids he saw struggling as he once did. Because he was open. Because he attended the original Woodstock—that, too, was formative, as it was impossible to be there without wanting to change the world.

All of that prepped him. All of that shaped him, even singled him out, as the one to create Nurtured Heart. “I mean, it sounds pretty flaky,” he admits. “But the cosmic can opener came out and opened me up sufficiently.”

And if he could head back in time and tap young Howie on the shoulder? What would he say?

“I would say: ‘Hang in there, buster. You’re gonna find exactly what you need. . . . The beautiful thing is, you’re not going through the motions. You feel some pain now of not being appreciated and seen—and it’s going to help you. Help a lot of people, eventually. So just fasten your seatbelt, and stay on board.’”

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post The Nurtured Heart Approach Goes Mainstream: Research and Experience Support “Celebrating Greatness in Every Kid” appeared first on Mad In America.

Melissa Bond’s memoir of benzodiazepine addiction, withdrawal, and recovery is a gripping read. The book tears along with the pacing and gut-punch emotional revelations of a novel or a screenplay—and it’s easy to picture some of her darkest moments projected on widescreen in high definition. It is beautifully, brutally cinematic, its vivid storytelling bringing to life an all-too-common scenario: The saga of a first-time mom who has trouble sleeping and is handed a prescription for Ativan.

That prescription is doubled. Then doubled again. Then, on top of that, she’s put on Xanax. So it goes until Bond’s skin is on fire, her legs buckle, and she plunges into a hell all too familiar to those struggling with benzos. After doing some research, she has her awakening—and then endures another kind of hell as she starts to taper off. So begins the fiery episode of the title:

“Heat runs like a fierce, howling wind up my back. I don’t know where my body begins or ends. Colors explode in my vision, raging like a wildfire through my head. The blood orange night turns red and screams through my eyes. The room titls around me. Consciousness shuts again. Velveteen black. Silence. Time stretches and disappears. A dark figure hovers at the doorway, watching me. I can feel the dark like a cold fabric wafting.  I can feel Death wait and then turn. Hssssss. And then there’s nothing.”

And she collapses, barely willing her limbs to crawl.

Bond, a poet and journalist whose writing has appeared on Mad in America, slings words with lyric ferocity as she describes her agonies and her efforts to find some way forward. She also describes the ups and downs of her marriage and home life, as her husband retreats and their daughter—one of the story’s brightest lights—is diagnosed with Down Syndrome.

All of this is so relatable on a human level, and so rivetingly told, that it could—should—crack a wedge into mainstream readership. It could—should—reach others who, like her, might be considering benzodiazepines without a complete understanding of their addictiveness and iatrogenic dangers. And who, like her, might have doctors who fail to understand that themselves. Or if they do, don’t care.

“What kind of medicine is this?” she asks at one point. “What kind of medicine makes people this sick?”

Rhetorical questions both, but they have to be asked—and they deserve to resonate far and wide.

*****

Grifting Depression: Psychiatry’s Failure as a Medical Science by Allan M. Leventhal with Sharaine Ely, with a foreword by Mad in America founder Robert Whitaker (Peter Lang)

This concise, determined book is dense with history, dense with facts: In taking psychiatry to task for its many flaws, Leventhal trains his eye on the all-out scam of inferior, cherry-picked research being used to push psychiatric diagnosis—and then push the drugs being marketed as the primary treatment. He chose to zero in on depression specifically because, he writes, “It is the best example of the problem, having become in just a few decades, and without scientific justification, the #1 psychiatric diagnosis.”

The resulting volume covers considerable territory: The distinction between “depression” and sadness, a normal response to loss; the medicalization of the psychiatric field and the construction of the Diagnostic and Statistical Manual (DSM); the bogus disease theory; research compromised by psychiatry’s relationship with pharma, including the NIMH-sponsored STAR*D study that was slyly crafted to leave out negative results ; and the layers of harm endured by those who were duped into thinking SSRIs have far greater efficacy than they do.

Grifting Depression lays out everything in plain English, articulating the arguments and outlining the data with an astute knack for pointed repetition and everyday adages. It’s also packed with italicized declarations, each one pointing to some cause for frustration or bafflement with the state of affairs. Describing Stuart Kirk and Herb Kutchins’ 1992 FOIA request into the data used in assembling DSM-III, Leventhal writes: “No new scientific data were behind any of the diagnoses. . . . Nor were the decisions about the disorders medically based. No new medical data were cited for the diagnoses.”

With each such italicized snippet, you can almost hear him exclaiming; you can feel his anger at not merely the failures of science but the deliberate subterfuge that recast them as successes.

In its final chapters, the book outlines the history and principles of behavioral therapy and lays out the research confirming its efficacy and superiority to antidepressants. “It did not come from a committee of doctors voting on a treatment that just happened to be in their financial interest,” writes the author, whose long career as a clinical psychologist includes tenures with American University and the Walter Reed Army Medical Center. In this case, the science is there; the studies say so. He calls for more.

For Leventhal—and for anyone paying attention—the conclusion seems obvious. “Scientific evidence directly challenges how mental health care for depression is being delivered. It is past time for the contrived evidence supporting the medicalization of mental health care to be examined for what it is and what it has wrought,” he says, “and for things to change.”

*****

Trigger Points: Inside the Mission to Stop Mass Shootings in America by Mark Follman (Harper Collins)

In the aftermath of shootings in Highland Park, Illinois, and Uvalde, Texas, no book could feel timelier than Follman’s. Still, we know that each latest incident of American bloodshed will quickly be supplanted by the next. There will always be new shootings. Follman’s book will always feel timely—and, paradoxically, outdated.

But Follman, a journalist and national affairs editor for Mother Jones, takes a forward-looking approach to such bloodshed and the cutting-edge projects designed to prevent it—training a lens on behavior-oriented efforts to identify or predict, and thus reduce, the emergence of likely shooters. As he explains in his introduction:

“Greater recognition of warning behaviors, both among trained professionals and everyday citizens, has vast potential for reducing mass shootings. What if there existed a community-based model for intervening constructively with troubled people well before they armed themselves and went on a rampage? What if, instead of so much effort on shooter response, we put a lot more on shooter prevention?”

A vital question, and one he answers by profiling the FBI agents and others behind threat-assessment teams and related programs. Focusing on alarm-bell behaviors such as gun purchases and admiration of past killers, those he dubs “the new mindhunters” do their best to scout out shooters before they shoot—and engage family, friends, and community members in the process. Follman illuminates the mindsets of past shooters and details past incidents, most strikingly in a you-are-there depiction of the Virginia Tech shooting of 2007 that left 32 dead and prompted survivor Kristina Anderson to hit the speaking circuit in appeals to emphasize prevention.

Ultimately, Follman, and those he quotes, point to causes and conversations beyond the usual “mental illness” narrative that invariably pops up after such killings. As he and others note, most shooters have not been diagnosed with a psychiatric disorder; based on their lack of DSM-recognized symptoms, most wouldn’t be. They don’t “snap”; instead, they plan their atrocities methodically and act with resolve. Meanwhile, most people diagnosed with mental disorders aren’t violent.

But there’s a wider truth here, one not articulated in Trigger Points: That all of this only points to the failures, even the absurdity, of the DSM’s definitions of disorder and ongoing pathologization of normal emotion.  Grieving for more than a year might prompt one diagnosis; struggling after trauma prompts another. But what’s more disordered, after all, than stockpiling weapons, scheming to kill innocents en masse, and then ripping bodies to shreds with an AR-15?

Maybe, at some point, the conversation will shift to the broader implications of what it means to be sane—and what it means to be human.

*****

The Anatomy of Anxiety: Understanding and Overcoming the Body’s Fear Response by Ellen Vora (Harper Wave)

What is anxiety? Why do we feel it? How can we shake it off—sometimes literally? What do we need to learn about our deeply ingrained stress response, and about ourselves?

Answering such questions is the aim of Vora’s accessible read, which is both a dissection of anxiety’s mechanisms and a self-help book.

Among the many concepts outlined within is her marked distinction between “true” and “false” anxiety: The former is the body’s reaction to something askew in our lives that demands listening and requires change; the latter is its reaction to lifestyle and diet. In a chapter titled “Body on Fire,” she considers the impact of inflammation and autoimmune responses, which—“by evolutionary design”—lead to a social retreat and symptoms that “bear an eerie resemblance to what we call depression.” What helps? Eating right, sleeping well, time in nature. Creativity, community, connectedness. Also: “It’s important to foster our connection to pleasure, whether it’s through orgasm or opera or chocolate.”

All of this seems obvious, or should be—but the obvious is too often overlooked  in a paradigm fixated on diagnosis and drugs. Vora, a holistic psychiatrist who also works as an acupuncturist and yoga instructor, packs her book with alternative approaches and nuggets of wisdom. As she acknowledges, some of these might or might not jive with everyone’s personal schema and circumstances, needs and beliefs.

Nevertheless, the book is dashed with insights and optimism, some of it unexpected: Pointing to continually skyrocketing rates of anxiety, she observes, “Our genes cannot adapt so quickly as to account for our recent catapult into anxiety. It stands to reason then that we are increasingly anxious because of the new pressures and exposures of modern life—such as chronic stress, inflammation, and social isolation. So, odd as it may sound, this recent acceleration is actually good news.”

The Anatomy of Anxiety includes a few statements that either reassure “the lucky ones” who find some benefit in psych meds that she is not trying to dissuade them, or express support for such drugs in general (e.g., “I am grateful for the advent of antidepressants and other medications…”). This feels out of place, even discordant, in a holistically minded work that’s open about the drugs’ shortcomings and withdrawal risks. Overwhelmingly, the thrust of the book is rooted in non-pharmaceutical approaches, instead calling out the errors of the biomedical narrative and reframing anxiety in more getable, doable, and compassionate terms. Drugs have little to do with it.

In an appendix, she itemizes the herbs and supplements she sometimes recommends in her own practice—but notes that such bottled nutritional add-ons “are not the focus of my approach to anxiety. . . . I think the pill-for-an-ill idea of conventional medicine misses the point; just as I don’t think anxiety is a Lexapro-deficiency disorder,” she writes, “it’s not an L-theanine-deficiency disorder either.”

****

Desperate Remedies: Psychiatry’s Turbulent Quest to Cure Mental Illness by Andrew Scull (Harvard University Press)

How do you rebut the bible? With an equivalently epic tome.

Granted, Scull’s massive undertaking is 480 pages including notes, or only half the length of the DSM-5’s 947. And it was not, repeat not, pieced together by a committee flush with money from Big Pharma. But it was written with a sense of mission, calling out false prophets in the history of psychiatry with meticulous care and calm indignation.

“We need to be honest about the dismal state of affairs that confronts us rather than deny reality or retreat into a world of illusions,” he says at the outset. “Those, after all, are classically seen as signs of serious mental disorder.”

From start to finish, Desperate Remedies is a stunning assemblage of research, histories, individual stories, and the many serial outrages inflicted by psychiatry in the name of medical progress. Boiling its contents down to a compact review would be next to impossible: All the corruption, all the drugs, all the blasts of ECT, all the brain surgeries sliced through with breezy confidence by lobotomists.

Consider just one: Walter Freeman, who dreamed of being “the Henry Ford of lobotomy” and cranked out six-minute transorbital ice-pick swipes in what Scull describes as “an assembly line.” In the summer of 1946, he headed out west in a camper he dubbed “the lobotomobile,” stopping en route to demonstrate and popularize his techniques. Wholly discounted were those who died or suffered memory loss after such procedures.

Six years later, the first edition of the DSM was published—and so began another bendy leg in psychiatry’s journey, evangelizing and spreading another kind of harm.

A prominent sociologist and social historian who has authored several other books on medicine and madness, Scull digs wide and deep in his excavation of psychiatry. The book unpacks the influence of Freud; the history of asylums, institutionalization, and deinstitutionalization; the efforts of psychiatry to justify itself as a practitioner of hard science and somatic cures; the rivalries at play in various corners of the field; the ebb and flow of theories and treatments that rise up, seize the profession, become popular, and remain so despite science that demonstrates questionable results at best, injuries and death at worst.

In the end, he concludes, “We need a very different approach. The fixation on the biological has led to another kind of stasis. . . . We should seek, in confronting madness, to avoid premature and uncritical enthusiasms and easy solutions. It would help enormously if psychiatry were to be more honest about the limits and imperfections of its knowledge.” So it would.

The post Books Under Review: Summer 2022 appeared first on Mad In America.

Originally trained in systemic family therapy, Schwartz earned his Ph.D. from Purdue University and started developing IFS in the 1980s. He’s published five books, including Internal Family Systems Therapy, Many Minds, One Self: Evidence for a Radical Shift in Paradigm, and, most recently, No Bad Parts: Healing Trauma and Restoring Wholeness with The Internal Family Systems Model.

Schwartz, who taught for many years at the University of Illinois at Chicago and Northwestern University, is currently on the faculty at Harvard Medical School. For more on IFS, see ifs-institute.com.

The following interview has been edited for space and clarity.

Amy Biancolli: How would you normally describe Internal Family Systems to someone? Incorporating, for instance, a rundown of the various parts and the concept of everybody having an internal family?

Richard Schwartz: IFS is a different paradigm for understanding the mind that says that rather than being a sign of pathology, it’s the nature of the mind to have what I call “parts”—what other systems call sub-personalities, or ego states, or voices. In multiple personality disorder, they’re called alters. It’s the nature of the mind to have them. 

We’re born that way—and we’re born that way because they’re all valuable. We need their resources to make it in life and to thrive. Trauma and attachment injuries, and things like that, forced them out of their naturally valuable states into roles that can be destructive and sometimes were necessary at some point in your life. But they often are frozen back there, frozen in time during a trauma, and they think you’re still five years old. They think they still need to do what they needed to do back then.

I recently wrote a book called No Bad Parts, which was trying to make that case: that so many things we think of as psychiatric diagnoses and illnesses are really just the activities of a lot of these protective parts. 

When you suffer that way, some parts are very vulnerable and young—what often are called “inner children”—and they’re the ones that get hurt the most, because they’re the most sensitive. They take on what we call the “burdens” of worthlessness, or terror, or emotional pain. When they get burdened that way, when they carry those feelings, they’re not so much fun to be around.

Before they get hurt, or scared, or ashamed, they’re lovely—because they’re all kinds of innocence, and playfulness, and creativity, and openness. But after they get hurt, now they can have the power to overwhelm us and pull us back into those scenes and make us feel the things we didn’t want to feel again. We tend to want to lock them away inside, in inner basements or caves or abysses, and just move on, not realizing that we’re moving on from our most precious qualities just because they got hurt.

Those we call “exiles,” because they’re locked up inside, and we have parts that do their best to try and keep them that way. When you have a lot of exiles, you feel more delicate, and the world feels more dangerous, because so many things could trigger them, and if they get triggered, then they have the power to overwhelm you.

Then a lot of other parts are forced into “protector” roles, some of whom try to protect you by managing your life so that the exiles don’t get triggered. They’ll tend to want to keep you a certain distance from relationships, or make you look perfect so that you don’t get rejected, or make you achieve a lot so you get accolades to counter the worthlessness, or take care of everybody around you so that they depend on you. There are a lot of different “manager” roles.

But despite the best efforts, still, your exiles get triggered sometimes. So there’s another set of parts who are on standby, and if you suddenly feel a wave of terror or pain, they’ll immediately go into action to take you away in an impulsive way, in a reactive way. They’re desperately trying to get you higher than the flames of emotion of the exiles, or distract you until they burn themselves out. We call those “firefighters,” because they’re fighting these raw flames of emotion that the exiles carry.

So that’s the very simple map to the inner territory.

In addition to all of that—and probably the most important discovery of IFS—is that there is also a kind of essence in everybody that’s just beneath the surface of these parts, such that when they open space, it pops out—and contains all these wonderful what I call “C-word” qualities, like calm and curiosity and compassion and clarity. That is not a “part” like the others. That’s what clients said when I asked, “What is that?” They’d say, “That’s more myself, that’s not a part.” So we call that “the Self.”

It turns out that everybody has that. It can’t be damaged, and it’s just beneath the surface of these parts—so that when they open space, that “Self” emerges and knows how to heal, and knows how to help these parts transform, and knows how to heal external relationships. A lot of the work is designed to access that, and then when people are in that space, start to heal these parts.

Biancolli: If you could describe how IFS differs from the usual approach, the usual treatment, the usual biomedical paradigm: How is this different? What distinguishes it?

Schwartz: Yes, so there are a couple of different paradigms, one being that these diagnostic categories are symptoms of disease, and that they should be just treated as such, and not thought to be anything different than that. When you have a disease, you look for a medication, and so psychiatry has been very, very medication-focused. Then the other paradigm is that it’s some kind of cognitive distortion that needs to be corrected, and so CBT is set up to try and challenge the distorted beliefs that surround the issue. 

From my point of view, neither of them get to the limbic level of what is going on with people, which drives these activities.

Biancolli: Do you think that IFS digs a little deeper, or frames the issues differently? What distinguishes it from CBT, for instance?

Schwartz: Well, rather than thinking of the part of you that’s phobic, for example, as just a distorted cognition, we think of it as a young part of you that’s stuck in a place that’s probably pretty scary in your childhood.

Now, that’s a huge difference, because if you think of it as a cognitive distortion, you’re going to argue with it or try and expose it. There’s this whole thing called exposure therapy, where you try to have the person face their fear and desensitize that way. Which is torturous for many people, and often doesn’t work.

So instead, if you think of it as a young part of you that’s still very scared because it’s stuck in a terrible place, then you’re going to open your heart. You’re going to focus on it, ask it to show you what happened to get so scared in the past—to see yourself as a child, and you’re in a scary place. It’s been waiting for you to come and rescue it.

Once it feels like you really understand what happened, and how bad it was, then I would have you go in and be with it, back there, in the way that that child needed somebody at the time—until that child was ready to leave with you. We could literally retrieve these parts from where they’re stuck in the past. Once that happens, we can help them unload the fear, because now they trust they’re safe, and they don’t need it anymore. We have a process we call “unburdening” where we help these parts give up the extreme beliefs and emotions they got from these scenes.

At which point, it’s like a curse has been lifted, and they’ll transform into their naturally healthy, valuable states. Then we can bring in all the “protectors” who were trying to keep it locked up—or in some way, deal with it—to see they don’t need to do that anymore. They don’t need to make the person phobic, or anything. And help them into new roles as well. So it’s just a totally different paradigm.

Biancolli: Just to reiterate: Some of the many parts that people have might be, as you said, an “exile,” which could be an 8-year-old child who was traumatized. Then you’ve got the “protectors,” who are trying to make sure that child isn’t going to be in a situation where the child is triggered. Then you’ve got all these other pieces that are trying to basically cope with all that happened to them. 

Schwartz: Right.

Biancolli: Does it boil down to a lack of judgment? It’s inviting people to say, “Okay, you have this child inside you somewhere. Regard this child almost from a distance, with compassion, and look at the child without judgment? Look at these other pieces which might be more difficult, also without judgment?  Is the lack of judgment a big piece of it?

Schwartz: Just one piece of it. I don’t say, “You have this child inside of you. Let’s go find her.” I would say, “Focus on the fear. Find it in your body, and see if you can get curious about it, and then ask what it wants you to know.” And then people spontaneously will either see a child, or they might see an animal. They’ll see some image of the fear. Then I’ll help them get compassionate toward it, and so on. It’s very non-directive, in a sense. Just helping them get curious about what’s in there, and then, once they learn what’s in there, get compassionate about it and relate to it in a compassionate way.

Biancolli: So it’s more open-ended.

Schwartz: Yes. 

Biancolli: Following their leads. 

Schwartz: Exactly. 

Biancolli: Could you speak a little bit to your own a-ha moment—the origin story? How you came to IFS?

Schwartz: I was trained as a family therapist. I have a PhD in that. I was working in a psychiatric context, and I was very eager to prove that family therapy had found the holy grail. I decided to do an outcome study with bulimia, and with a colleague, rounded up 30 bulimic kids and their families—and found, to my frustration, that straight family therapy didn’t do much. 

Out of that frustration, I began asking what was actually going on inside of them, and they started teaching this to me. Because they would talk about how when something bad happened in their lives, this critic would start to attack them and call them names—and that would bring up a part that could make them young, and feel empty and alone and worthless. That feeling was so distressing that in came the binge to take them away from it. But the act of the binge would bring the critic back, and then that would, of course, make that worthlessness come back, and then that would make the need for the binge to come back.

As a systems thinker from family therapy, this sounded familiar—it sounded like one of these vicious cycles that people get caught up in. So I got very intrigued, and initially made the mistake of trying to fight with the critic, and trying to control the binge. I kept doing that even though kids were getting worse.

Then I had a client who, in addition to bingeing and purging, cut herself on her wrists—and that was so dreadful to me to have somebody doing that on my watch. So one session, I decided I wasn’t going to let her leave my office until the cutting part had agreed not to do it, and so we both badgered the part for a couple hours. It finally said, “I won’t. Okay.” 

Then she came back in the next session and had a big gash down the side of her face. I spontaneously just collapsed emotionally, and I just said, “I give up, I can’t beat you at this.” And the part said, “Well, I don’t really want to beat you.” 

That was a turning point in the history of this work, because I shifted from that coercive part of me to just being curious and just said, “Okay, then why do you do this to her?” And it proceeded to tell me the story of how, when she was being sexually abused, it had to get her out of her body, and it had to contain the rage that would get her more abuse. 

Now I’m not just curious, but I have an abiding appreciation for the role it played in her life, and I could convey that to her part. It broke into tears, because everyone had demonized and tried to get rid of it, and it talked more about how it still needed to do this. But as it did, it was clear to me it wasn’t living in the present, because her present context wasn’t dangerous. It was really still living back when she was six or seven, getting abused.

So with all of that, I just started to experiment with trial and error: Okay, how can we change some of this stuff? And not from a coercive place, more just curious. If I’m proud of anything, it’s that I allowed my clients to teach all this to me, and lucky to have some clients who could really straighten me out when I was going off in the wrong direction.

Biancolli: You just mentioned your coercive part. What have you come to learn about yourself? Have you applied IFS to yourself? What are the epiphanies you’ve had?

Schwartz: First of all, that I have a “Self”—that was news to me, too. And that I also had all these parts that had been running my life that were based on some of my own traumas that were getting in the way. Some of them sort of goaded me into creating this, because I came out of my family with a lot of worthless feelings and had to justify my existence. They helped me put up with all the slings and arrows I encountered trying to bring this new paradigm.

Then there were parts that would get in the way with clients, because I probably would have been diagnosed ADHD as a child, and so it was hard to maintain a real focus sometimes, and I’d be distracted with clients, or bored with clients. I was lucky, again, to have clients who would call me on that. If I’m proud of anything about that, I would own it and I’d say, “You’re right, there’s a part that took me out. I’m going to work on that.” So my main job was just to become a clearer vessel for bringing this, and get my ego out of the way, and all of my parts to let me lead in a more Self-led way.

Biancolli: Getting back again to the disease model, one is the idea that we just have one mind: In the book, you call it the “mono-mind.” Then there’s this idea that simply getting labeled makes you feel less-than. Is that essentially what you’re doing? You’re challenging that and saying, no, your job isn’t to slap a label on your clients. You’re trying to understand them, take cues from them, listen to them.

Schwartz: Yes. The pathological label tends to scare therapists and leads them toward more medical kinds of interventions, and isn’t necessary. I find that the DSM is an accurate description of what are mainly just clusters of protective parts that organize in different ways in different people. If you think of them that way, then you’re going to approach them with curiosity, and you’re going to learn how they’re trying to protect, and you’re going to honor them for their service, like you do the military, rather than call them pathological names and try to get rid of them.

Biancolli: There’s a way that I’ve heard people phrase it in terms of trauma: to ask not “what’s wrong with you?” but “what happened to you?” Is that in essence what IFS is trying to do?

Schwartz: Yes. I mean, we are framing all these symptoms as often the product of trauma—not always—if that’s what you mean. Yes, it’s the way inner systems organize after people have been hurt and then abandoned, basically. Because it’s one thing to get traumatized, but then the most pernicious part is the aftermath, where you lock away the parts that got hurt and try to stay away from them from that point after. Virtually everybody in our culture is taught to do that, and if you have a lot of “exiles,” like I said, you’re going to need a lot of extreme “protectors” that cause symptoms.

Biancolli: What were your goals in writing No Bad Parts? And do you have a sense of mission—of wanting to spread the word with these ideas?

Schwartz: Yes, that was my goal. I had been focused for most of my career on training therapists and been fairly successful on that, and it just feels like time to try and change the culture. This is a paradigm that could make a big change in our culture, and so my goal was to begin that process of bringing it more to the public.

Biancolli: You’re also doing training work for mediators, for conflict resolution, and from what I understand, there’s an international component, a policy component. Is this part of a wider effort to change how we relate to each other?

Schwartz: Very much, yes. I’d say in the last decade I decided, and it sort of happened spontaneously, to try and bring it to higher levels of system and not just to psychotherapy. I’ve had a number of different opportunities to do that, and so there are a lot of different projects in that direction.

Biancolli: The approach reminded me of the Hearing Voices Network, that whole movement of people who hear voices and don’t try to suppress them—try to listen to them and learn from them. Do you see a parallel?

Schwartz: Very much. I’m a supporter of that network. I haven’t been actively involved, but I would say they understand the voices in a similar way, and instead of being afraid of them or fighting with them, they’ve learned to listen, which is a good first step. It doesn’t necessarily heal their systems, but at least you’re not polarizing inside the way most people do when they start to “hear voices”—because the voice is usually one of these parts. It just needs to be listened to and brought out from where it’s stuck in the past.

Biancolli:  You also refer, at one point, to an inner orchestra—having different musicians playing different instruments, or singing different parts in a choir. When you’re making music with other people, you’re listening, and you have to cooperate or it falls apart.

Schwartz: Yes. 

Biancolli: That struck me as a really interesting analogy—and correct me if I’m wrong, but you’re also almost asking us to take a look at our different parts in a literary sense. Or is that pushing it?

Schwartz: What do you mean in a literary sense?

Biancolli: For instance, my favorite book is War and Peace. I love the family dynamics, and all the parts pop out, and you understand them almost by looking from above. I wondered whether it’s too much to say that, in a way, we have those parts inside of us. We’re all carrying around a story, a War and Peace. 

Schwartz: Yes. That’s very apt. I like the metaphor, and yes: You, as the reader, are just observing. With a book like that, you have some judgments about some of the characters, but mainly you’re just kind of watching the story unfold. So that is a good first step, is getting some distance from these parts and noticing how they relate to each other, and doing it from a place of mindful acceptance. But again, that’s just the first step. So what I try to do with IFS is say, it’s not totally compassionate to watch suffering beings parade by. Even if you’re accepting them, they need to be helped, and you have the wherewithal to do that.

Biancolli: Has any of this surprised you? Are you still surprised sometimes, or are you still having insights?

Schwartz: Yes. That’s the wonderful thing about this gift I’ve been given to bring. It’s been amazingly entertaining and adventurous. It’s been a constant learning process, and continues to be. I’m still learning new ways to work with the systems. I’m learning new things about parts, and I’m learning new ways to work with my own—or learning about new parts I need to work with. Put it that way. It can be quite an adventure.

Biancolli: This is a quote from your book: “Your inner world is real. […] They are inner beings who exist in inner families.” Have you met resistance with that? How often does somebody say, “Yeah, no, sorry, I can’t do that”?

Schwartz: Not nearly as often as it did as I was starting out. That was almost always the reaction, and I was guilty of it, too. I started to work with parts, but assumed that they were just metaphors for different thoughts and impulses and so on. I went to hear a woman named Sandra Watanabe talk, who had developed something called the “Inner Cast of Characters” back then, and she was talking about them as if they were real. I came up to her and said, “You don’t really think these are real, do you?” She said, “No, they’re very real.” And I walked away thinking, how naive.

Then a few years later, I was totally convinced of their reality, too—and have been ever since. 

And it is a tough sell in this paradigm, partly because multiplicity has been so pathologized, like we’ve been saying. That either you’re crazy and you have parts, you hear voices, you have multiple personality disorder—or you have this one mind that just has different thoughts. There’s no in between.

Biancolli: What will it take to change the paradigm—whether with IFS, or with any other approach? In general, what will it take for that to change?

Schwartz: It does seem people are very, very skeptical. Once they try it, and once they actually enter these inner worlds, not all but many of them really can shift fast. Because it is so real when they get in there. One approach has been to just try and get more and more people to try it, and that actually has panned out. I mean, IFS has become very, very popular and influential because, finally, lots of people have tried it.

Then the other approach has been to try and do a lot of research, particularly with difficult populations that traditional models don’t have much luck with. If I can show that we have these amazing results, then that’ll pique the interest—even if they don’t want to think of it as real—of the traditional bastions of the field, because they’re so desperate to find effective solutions to these problems. I’ve been talking to a state senator in Washington State about doing an outcome study with IFS and domestic violence, for example, because they’ve pretty much given up on treatment for domestic violence, because the model they were using was proven to be worthless. But if I can show that we can actually change that, because that’s the root of so many other issues, then people get interested.

Biancolli: Something else you talked about in the book was this obsession we have as a culture with sin, and the idea of somebody being innately wrong. Is that also something that people have a hard time overcoming? 

Schwartz: Yes. Particularly religious people have trouble. But that view of people, it’s had a big influence on our culture, the idea that there is sin and evil inside of us—which I don’t deny, because a lot of these “burdens” would qualify. But they aren’t the parts, and then the parts get misidentified as the evil impulse. So instead of trying to heal the part, you try to throw it out—the baby with the bathwater. So that’s what I’m trying to clarify.

Biancolli: I’m also interested in the exercises you have in your book encouraging people to observe their inner parts, understand their inner parts, and in some cases observe an inner part who tends to get triggered. Have you heard from readers who’ve responded to that? Have you gotten any feedback?

Schwartz: Yes. People seem to be able to do it. Some people get the audiobook version because they need to listen while they do the exercise. But a lot of people, I was amazed, could just do it from reading the exercises in the book. I really had no idea how well this would be received by the public, and I’ve been very heartened. I mean, if you just look on Amazon at the feedback, so many people say their life’s been changed just by reading the book and trying the exercises.

Biancolli: I was additionally curious about the “laws of inner physics” and the idea that if you simply ask a part not to overwhelm, that it won’t. That you don’t have to be afraid even of the darkest part. You can just ask it not to overwhelm, and it cooperates.

Schwartz: If they think it’s in their best interest. You’ve got to convince them that it’s in their best interest to not overwhelm. Yes.

Biancolli: Does it take a while to reach that point?

Schwartz: Not usually. Let’s say we’re working with an exile that carries a lot of pain, and the client complains—because whenever she opens the door to that, she’s overwhelmed, and can’t get out of bed for a week, or something. I’ll say, okay, let’s talk to that part. 

I’ll say, “You do tend to overwhelm her? Is that right?” 

“Yeah.” 

“Okay. What are you afraid would happen if you didn’t?” 

“Well, she’d lock me up again.”

“If we could get her to agree to not keep locking you up, and instead listen to you, would you have to totally take over that way?”

Almost always they say, “No. But I don’t think you can get her to agree to that. She hates me so much.”

I’ll say, “Well, I’ll make sure she doesn’t. That she listens to you. But to do that, I really need for you to not totally take over.”

And if they think it’s in their best interest, then they don’t need to take over. So that’s another way that if you can think of these as sentient beings—which they are—it’s all negotiable. You can negotiate most anything.

Biancolli: You can engage in a dialogue with them.

Schwartz: Yes. 

Biancolli: As you were saying, this is not just mental health, but the wider conversations around who we are. It sounds so simple, but ultimately, that’s not easy for a lot of us, is it?

Schwartz: No, it’s not easy—because we’ve been so socialized to think the opposite. That’s a tough sell on the meeting, but once people get the habit of it, it becomes a lot easier. But often, by that time, they’ve already exiled lots of stuff so there is just a lot of work we have to do to bring it back.

The post The Parts Within Us: An Interview with Richard Schwartz, Creator of Internal Family Systems appeared first on Mad In America.

She’s the founder and CEO of VictimFocus, a trauma-informed UK organization that challenges the blaming and gaslighting of victims—and advocates for change in how they’re treated. She’s also the author of the 2020 book Why Women Are Blamed for Everything: Exploring Victim Blaming of Women Subjected to Abuse and Trauma. 

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: Jessica Taylor, so grateful to have you here today.

Jessica Taylor: Thank you so much for having me.

Biancolli: At one point you say the book “has been burning away in my brain for years.” Why this book? Why was it necessary, why now?

Taylor: Ever since I figured out that mental health and psychiatry wasn’t what it looked like on the surface—which was many years ago, but it was quite a slow realization—I just had this urge to talk about it and to write about it. But at the time I was a little bit concerned that I was barking at the wrong tree, that I was some sort of conspiracy theorist. Then in my own practice, I saw mental health and psychiatry being used against women and girls on a daily basis. For me, it was this belief in the professionals, belief in services and authorities, that the best thing for them was to be diagnosed with a psychiatric disorder.

I just didn’t agree. That feeling got stronger and stronger and stronger as my career went on to the point where I just couldn’t ignore it anymore. I thought, isn’t this common sense? The things that I’m saying, they’re not that wild. I’m saying that if humans are traumatized, why would that constitute an illness and therefore, why would they require some sort of medication for distress? But actually, I realized that most people, when you make those arguments, don’t understand it. They’ve been really effectively groomed. They’ve been effectively persuaded that these people have illnesses inside their brains that are the equivalent to physical illnesses.

So when I started writing books, I had this thing in the back of my head that was, “Write it, write it, do it, put it out there, let people read it and lay the evidence out to everybody that women are being pathologized and oppressed via mental health and psychiatry.” When I got the multi-book deal with Why Women Are Blamed for Everything, the first thing that I said to my publisher when I first met him was, “I want to write a book on this topic—are you going to let me do that?” He said, “Absolutely do it.”

Biancolli: I want to address this quote—talking about why you titled it Sexy but Psycho. “Sometimes it strikes me that we are saying to women and girls: Look sexy. Be pretty. Act feminine. Be desirable. Be sexually available. Be fun. Be flirty. Be nice. But do not speak.” Then in a little bit you go on: “Do not talk about your traumas.” That’s such an universal experience in any context, but particularly after experiencing some form of trauma, some sexual violence. Could you speak to that?

Taylor: Women are so effectively objectified and sexualized in society that your only role, really, is to look pretty and sharp. There are slight deviations to that every now and then. But it won’t last very long. Like for example, if you’re a female politician you’re only really accepted if you’re also sexually attractive. If you’re a female politician that’s, for example, masculine presenting, or butch lesbian, or you don’t dress or look a certain way, then you’re very likely to be ignored or mocked relentlessly. The only role that you have in society as a woman is a sex object. If you step outside of that and have opinions—be assertive, or be challenging, or don’t want to conform to femininity at all, or you’re lesbian—then you are very quickly demonized in one way or another.

Biancolli: The absolute worst-case scenario is when a woman is a victim of violence—when she’s raped and she tries to talk about it. Obviously this is a big part of your book, and you tell the stories of different women. What happens to that woman who says, “Hey, this happened to me,” and wants to be heard?

Taylor: The most common response, which was found in research from the ‘80s onwards, is that the vast majority—and I think this is very important that women and girls know this—the vast majority of women and girls who disclose that they’ve been raped or abused will do so, first of all, to a family member or a friend. It’s never an authority first, generally speaking. But the findings from the ‘80s onwards found that about 80% of all of those women who speak to their family members or friends will be blamed, or disbelieved, or accused of lying by their family and friends. That’s actually the most common response from your family and friends—to be outcast, disbelieved, reframed as lying, attention-seeking or malicious. So that’s very common.

We all know that self-blame is extremely common. Even girls of the age of 11 years old will usually blame themselves and they will believe rape myths and stereotypes about what a real victim is, and they’ll measure themselves against that even from that young age.

Adult women do that as well. Something will happen to them in their relationship, by a stranger, or a friend or whoever it is that abused or raped them. The first thing a woman will start doing is measuring herself against this hierarchical stereotype of, “Am I a good enough victim? Was I drinking? Are there any witnesses? Who did I tell? What was I wearing? Did I bring it upon myself? Is there anything I could have done? Why didn’t I say something? Why didn’t I stop them? Why didn’t I shout? Why didn’t I fight back?”

Then also, “Is anyone going to believe me? They’re going to think I’m crazy. Are they going to think this is attention-seeking? Are they going to think this is some sort of mental health issue or a personality disorder?” We live in a society that is doing this, in my opinion—this really strange movement towards pretending that there’s no stigma in mental health and psychiatry, and that it’s completely neutral. But women at a deep level they know it’s not neutral, they know that there’s a chance that if they come forward and say, “I’ve been raped,” they’re going to get recast as hysterical, or mentally ill, or disordered in some way.

Biancolli: Repeatedly you make that point in the book—how women are instantly discredited as somehow psychopathic or mentally ill, which is a term that you completely reject. But I was also struck by that chart you have of two lists: ideal woman versus crazy woman, beautiful versus ugly, young versus old, disobedient versus obedient, dependent versus independent. You look at all this in the context of history. You talk about Eve—that women have been pathologized since Eve.

Taylor: Yes, that’s right. Because when I wanted to write Sexy but Psycho, I felt very strongly that it needed to be situated in the historical context of these things that we’re seeing—of women being positioned, as you say, as problematic and difficult and ill and disordered. This is thousands of years’ worth of narrative here. I spoke about ancient Greek philosophers who argued that women are defective versions of males.

Feminism is so in its infancy compared to the misogyny. The misogyny is thousands of years old, but feminism is a hundred years old. We are trying to undo, and we’re trying to unpick, embedded structures in society of women being inferior and seen as crazy that have been dominant for millennia. I wanted to make that clear in the book so that people could almost link the dots because, there’s so many of our systems today that are actually still based on things that are over a thousand years old, or 500 years old, or 300 years old. I think people have lulled themselves into a false sense of security that we’re a lot more progressive and intelligent than we think we are.

Biancolli: I think that happens with every generation, too: “We’re finally aware, we finally realize all our errors in the past, and now we’re a much shinier model than we used to be.” Is that a hurdle to overcome? Saying to people, “Hey, wait, wake up. No, things aren’t as great as you think they are”?

Taylor: Yes, I actually do think that, and that’s one of the things that people struggle with me the most—that I am often the voice of doom that goes, “We’re not as good as we say we are,” or “Actually, we don’t do that that well.” We are still kidding ourselves, all the time, that we’ve got this stuff figured out, that we know more about the brain than we do, that we know more about psychology than we do—and human behavior and human development. We have entire disciplines essentially built on this set of beliefs that we know much more than we actually do.

We need to take a massive step back and accept that a lot of what the public thinks about mental health and psychiatry is myth and assumption and stereotype and bias. That’s where people start to get very uncomfortable, because they don’t want to take a step back today.

Biancolli: As you pointed out, the system is designed to make us accept how things are: the patriarchy, the history of psychiatry, the DSM. You widen the lens to class, to race—the history of black people being pathologized. For instance, “drapetomania” as a diagnosis for enslaved people who were trying to be free. It’s the upper echelons of the patriarchy saying, “You’re innately wrong.” Women being told, “Your menses, you’re bleeding every month: you’re wrong. You’re going through menopause: you’re wrong. You have hysteria: we have to yank that uterus out of you.” Is that it? People in power saying to those without: “The fact that you have no power means you’re crazy. Basically, you’re disordered.”

Taylor: That’s essentially the conclusion that I’ve come to: that if you’re in power, you can define what’s abnormal and normal, and then you can place that on other populations. Which is what we already do anyway. Look at colonialism in history, when white people have gone over to another community, another religion, another country, and gone, “That’s all wrong. We’re getting rid of all that, we’re in control now.” People in power have been doing that forever. I don’t think psychiatry and psychology is any different.

It always makes me think about something my wife said to me a couple of years ago. We were talking about politics and psychology and ancient philosophy, and she said that a lot of these philosophers only had the reputation they do now because they were some of the only people in society that could read or write—so they basically just said whatever they wanted. They were rich, they were in power. They were the only people that could write down their thoughts and then communicate them to other people, and so they were seen as the most important thing—despite the fact that there were probably many other very intelligent thinkers that couldn’t read or write at the time. Therefore they were ignored because they were poor, or they were less educated.

So, basically, a bunch of men who were at the top of society at the time wrote some stuff down and everyone said, “That’s the way it works.” She just made me laugh. I think that’s what happened in psychology as well.

Amy Biancolli: Could you speak to that a little bit, and how it relates to the biomedical paradigm? The idea of everything being tied to something that’s wrong with us?

Taylor: That fascinates me, because one of the things that psychology is still not yet ready to do is accept that. Getting on to 60 or 70 years now, there’s been a crisis in psychology, whereby it tries to assert itself as a physical science. I really do believe that psychology’s obsession with trying to theorize human distress, human emotion, as these physical entities that can be measured and treated like illnesses is because psychology is trying to keep up with medicine, physics, biology and chemistry. Psychiatry has been trying to do the same thing. Psychiatry eventually, after a period of time, almost got seen as a version of, a branch, of medicine. However, it can never keep up with medicine. It doesn’t have the evidence base, it doesn’t have the measurability, it doesn’t have reliability or validity.

We’ve made zero useful discoveries in psychiatry and psychology in the last 100 years compared to medicine, and that’s the way it is. We need to accept that these disciplines are not as robust as they wish themselves to be. In one of my books, I said that psychology has moved more and more towards neuroscience and neuropsychology in the hope that the MRI machines will give us some insight into the brain and it will give us scientific data that looks like a physical science. It means that universities have cut their departments in order to afford MRI machines so that they can run studies with a sample of eight people. That is a ridiculous waste of money, because you can’t generalize. It’s not the same as the physical sciences.

I really love the fact that the brain doesn’t give away secrets. I really love the fact that you can’t dissect a brain and say, “There’s the thoughts, and there’s the memory, and there’s the consciousness.” The fact that we can’t figure out exactly how it works, and we can’t define consciousness, and we can’t define a thought, and we don’t know what dreams are for, and there are all of these things that we still don’t understand, I embrace that. But I know lots of scientists are looking for answers. They’re looking for resolution, they’re looking for a conclusion. Whereas I would rather remain open-minded and sometimes, cynically, I think maybe we’re not supposed to know, because we’re a horrible species.

Biancolli: It’s better if we don’t know.

Taylor: Yes.

Biancolli: That strikes me as parallel with what you were saying before. Professionals and people in psychology are saying, “We know what’s going on. Past generations didn’t know.” It’s like every generation has to be convinced that they’re at the cutting edge.

Taylor: Oh, yes, for sure. That really does come at the detriment of humility—that we can’t really explain it, that we are clutching a little bit at straws. If we look at it from that white-supremacist approach as well, we have ignored so much cultural wisdom around the world about the mind, and about what emotions mean and how humans behave.

That’s something that has really annoyed me in the last few years, that the sweeping control and influence of the DSM, psychiatry, and psychology as a white and very powerful and racist institution is then being pushed across the world—as a norm—that these disorders are all the disorders of humans. And now everybody has to fit into them, despite the fact that human behavior differs massively across religion, culture, language, society, community, tribes, everything. I find it so arrogant, I really do.

Biancolli: As you point out, women are seven times more likely to be diagnosed with borderline personality disorder, which has a reputation as being basically a garbage diagnosis. You call it the modern-day hysteria. Once somebody’s diagnosed with borderline, then anything they say is definitely not going to be taken seriously. My late sister really struggled with a stream of diagnoses, and she was on every conceivable medication. Was hospitalized 13 or 14 times. Ultimately died by suicide in ‘92. I will never forget her description of what happened when she got the borderline diagnosis, which was everybody stopped listening.

This is what women go through. Why is it not heard more often? What is it going to take until stories like that are heard?

Taylor: That is the power of the diagnosis, isn’t it? Those stories won’t be heard, because they’re not seen as legitimate stories, because the diagnosis overrides the legitimacy of the story. If you’ve been diagnosed with borderline personality disorder, especially as a woman, and then you try and speak out about it?

That diagnosis really just positions you as an attention seeker, a liar, unreliable, disconnected from reality, and also manipulative. That one annoys me the most, because there are so many professionals out there that I’ve spoken to and I interviewed for the book that were directly trained and told, “Do not listen to borderline patients. They will manipulate you, they will lie to you, they will control you, they will wrap you around their little finger, they’ll get you doing everything that they want you to do.”

Professionals will speak to me and they’ll say something like, “We don’t talk to the borderline patients, because they take information about you and then they’ll use it against you.” Whoa—how have you been trained? Even if, let’s say, for example, that borderline personality disorder is real, which I don’t think it is, but say it was. Let’s say that—let’s also accept that mental health is the same as physical health. These are just illnesses, they’re just the names of illnesses. How would you get away with training professionals not to listen to that particular set of patients?

Nobody in med school is told, “Don’t listen to the diabetics. They will lie to you, and they will control you and manipulate you.” Why is it allowed?

I’ve worked in violence against women and girls, now, for 12 years, and it is the most common diagnosis. I can usually predict it before it even happens—weeks or months before it’s come in. I know what’s going to happen, and then I know what medication. I know what the risk assessments are going to say. I know what the rest of their life is going to look like. It shouldn’t be like that. And the fact that it’s used as a slur by professionals as well, professionals in my own field—“She’s a bit borderline.”

Biancolli: Does that tell you that the DSM itself is innately misogynistic? Is there something in its essence, in the way that it’s compiled and the way that it’s spread almost like the gospel?

Taylor: The evidence base suggests already from previous pieces of research that the DSM is innately misogynistic, because being female positively correlates with every single diagnosis in the DSM. We also know from previous pieces of research that women are much more likely to receive multiple psychiatric diagnoses, whereas men are more likely to just get one diagnosis. As we know, with borderline personality disorder, you’re seven times more likely if you’re female to be given that. You’re also much more likely than that to receive a borderline personality disorder diagnosis if you’re bisexual.

Now, I find that fascinating, because bisexuality in women is seen as almost the ultimate deviance—that she sleeps with women and men, and that she’s sexually attracted to both. The DSM has always positioned that as an identity crisis: that if a woman is bisexual, it’s because she has problems formulating her identity. That, for me, is a red flag.

There’s a piece of research—a couple of years ago in the UK—that found that there is a higher proportion per ward of women with borderline personality disorder that are bisexual than straight or lesbian. Lesbians are definitely discriminated against. But I just find it fascinating that it’s bisexual women that are much more likely to be diagnosed with borderline personality disorder.

Biancolli: They’re demonized in a particular way, or in an additional way.

Taylor: Yes. Definitely, yes. 

Biancolli: Your work with VictimFocus.org, and calling out victim blaming—that’s been the focus of your career. You talked about all the different ways, in your book, how women are blamed via diagnosis. You say, “It’s amazing to think that there is no such thing as ‘men who batter women syndrome,’ but there is ‘battered woman syndrome.’”

Taylor: You want to just give up on everything, because it’s so obvious. It’s staring us in the face—the misogyny and the positioning of women who have been abused.

It is right there. For years, the argument was that women who say that they are being abused by their husbands or their fathers or boyfriends were the problematic ones—and so there never has been a formulation of some disorder for violent men who raped and abused women. But there are lots of psychiatric diagnoses for women who’ve been raped and abused by men. It’s not an illness to be distressed because you’ve been subjected to serious abuse, and violence, and oppression, and discrimination, and all the rest of it. That’s not a disorder.

But I also don’t think that committing those crimes is a disorder. Men live in a society that’s misogynistic and supportive of violence of all kinds, literally glorifying and sensationalizing violence of every kind, constantly.

These men that commit crimes like this, they’re not mentally ill. It’s not some sort of disorder, they don’t require therapy, they don’t require medication. They live in a society that congratulates them and sensationalizes what they do and actually supports what they do at every level. Actually, they’re behaving in a socially prescribed way. It’s not an illness.

Biancolli: Your work is focused on the idea that no, nobody’s really mentally ill, just everybody has gone through something. I know that’s a vastly simplistic way of explaining it. But how much of a shift does that require in thinking—rather than saying there’s something innately wrong with you, instead, let’s actually listen when you talk about your childhood abuse, or whatever it is that traumatized you?

Taylor: It does require massive systemic overhaul, and I get that scares people—and then it’s a lot of work. But it’s the only way to make the progress that we need to make in humanity. Because what we’ve done instead is we’ve set up very sophisticated and intelligent, progressive-looking systems that mean, for example, that you can only access welfare if you’ll take a psychiatric diagnosis and take the medication. You can only access certain forms of support if you’ll accept you’re mentally ill and take the medication. You can only get on therapeutic waiting lists if you’ll accept a psychiatric diagnosis and take the medication. Everything has become connected to these labels.

Biancolli: You were talking earlier about the effort throughout the history of psychology and psychiatry to rationalize, to justify themselves, as medical professions and as hard science. At one point in your book you say mental health is not the same as physical health. It’s not the same as a broken leg or painkillers.  The flip side hit me: When you break a leg after a fall and you go to the emergency room, we aren’t told there was a problem deep within our bones. We’re not told it’s in our genes. We’re not all told that it’s osteoporosis, unless we’re of a certain age. But they wouldn’t even say that without a test. The women you described in your book—and countless women—are told that they’re broken, that they are the problem. And in an almost existential way, right?

Taylor: Yes. There are many differences between mental health and physical health, but that is one of them—there is no test, and that it’s all just assumption and observation. There are no validated tests for any mental health issue—there’s no blood test, there’s no genetic tests, there’s no brain scans. There is nothing. We’ve created nothing in a hundred years.

The only thing that psychiatry and psychology relies upon is observational self-report measures, psychometric measures, and they are not a diagnostic test. They could change from one day to the next. They would change depending on how somebody understood the item, or whether they even spoke English as a first language. They are hugely biased.

People were extremely angry with me for saying that. I often wonder how much of that anger is that they want to believe that it’s a science, they want to believe that it’s scientific and that there’s proof that it’s genetic. Or that it’s some sort of neurotransmitter imbalance. Or maybe hereditary in some way. They want that because it sounds real and legitimate, and it almost validates how they’re feeling as a real illness. I think that people are scared that distress and trauma is just not good enough, like it’s not seen as a valid enough cause. Does that make sense or not?

Biancolli: I’ve been lucky to not get sucked into the psychiatric system myself, but I think back to after one of my kids was born. I had a regular checkup—and it was a young doctor I hadn’t seen before. He’s sitting there with a checklist, and he’s asking me various questions. He knew that I just had a baby. I’d mentioned that I wasn’t sleeping very well, and I confessed that I was down.

He whips out his prescription pad, and he writes out a prescription for Prozac. I say, “I’m not going to take that. I don’t want it.” He goes, “Well, here, just take it. You might change your mind.” “No, I’m not going to take it.” He says, “Take it.” He hands it to me. I went home and threw it out. I know I’m not the only woman who has given birth and been exhausted afterward, and then gone to the doctor and the doctor says, “Well, that’s abnormal.” What about this is abnormal?

Taylor: Yes, this is so important. I’m so glad you brought this up, because I wrote about this in the book—about pregnancy, birth, and periods and menopause. And also the postnatal period: I genuinely despise how likely you are to get pathologized in that period. And I’m sorry to anybody listening that has not yet had children—this is going to terrify you. But having children is really, really hard, okay? You get pregnant, your body changes in ways that you never imagined. You have a load of health issues that have come out of nowhere. Your birth could be traumatic or it could be fine, but either way, it hurts, and then you have to recover from that.

Then, all of a sudden, you’ve gone from being this individual with just your own choices in your own life to being the thing that keeps alive a small baby that you’ve never looked after before.

Loads of moms start off by having their baby sleep next to them, and they have this thing—“oh my God, is it still breathing?” Watching the chest go up and down. It’s terrifying. 

Then on top of that, you don’t have any freedom anymore. Your life revolves around the child and the sleep and the eating, and getting them changed and getting them ready, right? That is a normal, massive change. You would expect there to be some psychological impact—on top of the fact that you don’t sleep properly. Sleep deprivation kicks in after only two or three days. You are going to start feeling very ill very quickly, and that is normal.

Then if you’ve got no support, or if your partner is abusive, or if you’re a single mom, you’re going to get it even worse.

Biancolli: Did writing this book help in some way? Did it give you any insight or direction or understanding? Are there any positives that have come out of it? 

Taylor: I found writing the book quite difficult. There was the chapter on euthanasia that really upset me. I had to take several breaks whilst I was researching the use of euthanasia in psychiatry (in the Netherlands and Belgium) because that was when I started to get really angry. And there were a couple of the interviews with the women where I came out and just thought, “There’s no justice, there’s no appeal process, there’s no way of taking action or suing these wards for what they’ve done to these women.” At the end of the book, I talk about things that I want to create—the 10 or 11 things that we could do to actually change the system.

In terms of positivity, I know that there are quite a lot of large and very influential authorities that have read the book and are engaging with the arguments. I’m interested to see the meetings I’m having with them, and trying to convince them to look at an alternative away from the DSM, away from medicalization. There are a lot more people than we probably think reading the book and being, “Oh, hang on a minute, this does make quite a lot of sense, actually.” And so that keeps me going.

And I really want to build an advocacy scheme—that means that you can go and get an advocate that can sit in with you in these meetings, and challenge diagnosis and the use of medication. I really want to create that, and roll it out, and test it, and see if it works. Because a lot of women are in these appointments with a psychiatrist or a nurse or some other doctor, and they’re being told: “You’re mentally ill. Here, take this.” I just wonder, sometimes, if people could get an appeal or a second opinion, or they had somebody there. If a professional sat next to them and said, “Sorry, what is it that you’re prescribing, and why is it that you’re prescribing that?” Because if you’re in distress, you’re not necessarily going to be able to do that—but somebody else could.

I also want us to create an appeal process. There are a lot of women out there with psychiatric diagnoses on their file that is still harming them 20, 30, 40 years down the line—and they’re not even taking any medication anymore. They’re not even in any services, but the actual diagnosis is still on the file. I really want to see that taken off. You should have the right to have things removed. I want to build something around that, too.

The other thing from writing the book: The way I felt afterwards was almost, “Oh, thank God, I’ve got it all out. It’s all out. It’s in one book. It’s somewhere. It’s accessible. Anybody can pick it up and read it, and they’ll understand what I’m talking about.” I’m glad that I’ve done that. I don’t know where my life or my career has taken me. But I do know that that’s by far one of the most important things I’ve ever done, and I think that that book will outlive me.

Biancolli: Well, it was truly great to have you here today. Thank you for writing the book. Thank you for taking the time to share your insights with us.

Taylor: Thank you so much for having me.

The post Pathologized Since Eve: Jessica Taylor on Women, Trauma, and “Sexy but Psycho” appeared first on Mad In America.

The 2021 report, just published, was the project’s second annual effort. Authored by Thiagarajan and lead scientist Jennifer Newson, it surveyed more than 233,000 internet users in 34 countries. The overall objective, write the authors, is to “provide an evolving global map of mental wellbeing and enable deep insights into its drivers.”

Its results have considerable implications regarding mental health and the factors that contribute to it. 

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Amy Biancolli: So, just to hop into the results, Venezuela actually topped out the list of 34 countries for its aggregate score of mental wellbeing. At the bottom were English speaking countries: 30% reported themselves as distressed and struggling. Could you speak to that a bit? What are the contributing factors and ramifications?

Tara Thiagarajan: Well first of all, thank you so much for the opportunity to be here and talk about this. So, when we saw Venezuela at the top of the list, we were extremely surprised, because it’s absolutely not what you would expect, and our first reaction was, “That can’t be right, let’s go back and make sure we analyzed everything correctly.”

Obviously Venezuela has gone through all kinds of challenges, and you would really think that it would be one of the countries closer to the bottom. So this was really the impetus to start looking at all these different global indicators and drivers to say, what could possibly explain this kind of ranking?

I think what really has come out of that is a few key insights. There were a number of different cultural indicators that we looked at that were developed by other groups, such as the Globe Project, there’s the Hofstede project, which looked at cultural indicators of different countries. This is where we really saw the biggest correlations, and obviously, a correlation doesn’t necessarily mean that that’s the absolute cause, but I think in this particular report, our goal was to demonstrate what kind of factors seemed to be related so that it could drive further investigation.

To give you an example, countries higher on individualism and performance orientation tended to have lower mental wellbeing metrics, and conversely, countries which had high in-group and family collectivism tended to have higher mental wellbeing.

One of the goals of this project is to really be able to look at mental wellbeing across the spectrum, from what we call distressed – which would be people who would have profiles of clinical disorders – to thriving. People move along the spectrum, I think, across their lifetimes in different ways. And it seems that culture has a lot to do with where people are on this. 

So, the other side we looked at was economic factors. And obviously, when we looked at this list of countries, and where mental wellbeing was highest, it certainly is not a list that is economically ordered from highest –  those with the highest economic growth or GDP – to those with the least. 

In fact, it was somewhat the other way. So when we looked at the relationship of mental wellbeing to these economic factors and things like GDP, GDP growth, and Gross National Product, what we saw is that there was a negative correlation – maybe not as strong as the cultural factors, but still, a statistically significant negative correlation with mental wellbeing.

The question is really: How does the economic system drive culture? And how does culture end up influencing how people feel?

Biancolli: That really popped out at me. And what I found fascinating was the negative correlation between countries that prioritize individualism and achievement with mental wellbeing.

Thiagarajan: The mechanisms of economic growth hand-in-hand with certain cultural aspects of individualism. I think that’s the way it has evolved in the world today: that economic growth is associated with increased individualism, and this focus on individual performance, and so on. 

What we realize is that there is a great human need for belonging to a social fabric, and I think that, as we’ve seen, even with the pandemic and the kind of impact that the pandemic has had, that the social isolation has had a very profound impact on the mental wellbeing of people. It points to this idea that the more we isolate ourselves, the worse we start to feel about a number of factors, and a lot of different aspects of our mental state start to fall apart.

Biancolli: Now, the social self – could you just define that generally, and speak a little bit to the role that it plays? 

Thiagarajan: So, the social self is really a dimensional metric that we have compiled from the data that is acquired in the Mental Health Quotient assessment, which aggregates all the different aspects of how individuals see themselves in relation to others and how they are able to relate to other people. 

So, just to back up and give you a sense for how this assessment is designed and structured: It captures a large number of mental attributes or aspects, and many of these are derived out of the types of symptoms that form part of the traditional DSM-based disorders. So it really covers and maps to all the 10 major disorders, but also looks at these aspects, not just on the negative side, but on the positive side as well. 

Out of 47 elements that are captured, it aggregates a subset of those that relate specifically to how you see yourself and relate to others. So examples of some of the elements that would be in there are your self image, self worth and confidence, your ability to form relationships with others, your emotional resilience and interactions, and factors like that.

Biancolli: The DSM, of course, is closely associated with the framework around mental health, especially in English-speaking countries. It also offers a very mechanistic, biomedical view, and you are using this survey, this MHQ, to really shape a different portrait of the factors involved in mental health. Is that the case? Do you feel like this sends a different message?

Thiagarajan: It’s a different lens, let’s say. It provides a different lens to some of the same things. So I wouldn’t say it’s totally different. It’s certainly overlapping, because we’ve derived it out of all the things that people have considered as something that can go wrong, right? Something that is negative in our lives and those are considered – from a diagnostic perspective and psychiatry – as a symptom. 

How do we extend it from just being, “Are you having a serious problem?” to “Where are you on the spectrum? And where do you stand on this larger picture of mental wellbeing, from distressed to thriving” – as opposed to just carving out the negative end of it. So that’s one part. I think the second aspect is that we’ve also brought into play other factors that go beyond, “What are the symptoms in the DSM?” For example, there’s certain elements that were put forth as the research domain criteria (by) the NIMH. There are some other factors from psychology that have been included. The idea was, how do we get the most well-rounded, 360 view of an individual’s mental makeup?

Biancolli: So you’re using it as a tool?

Thiagarajan: Yeah. So, how do you get the 360-degree view in a short assessment-time window? And it has a lot of flexibility in that, because it derives out of all of these symptoms. The symptoms can map back to diagnostic criteria if you want to do that, but also gives you this ability to look more dimensionally at things. We have different dimensions that we assess – like your mood and outlook overall, the social self drive and motivation, resilience – and these are subsets where some of the elements certainly overlap. But it just gives you a different perspective on what that mental makeup of the person is or mental challenges the person is facing.

To go back to your question on what is the social self, it really is the dimension that seems to have declined most substantially, relative to all others, though followed very closely by mood and outlook. If we think about this from the perspective of different challenges to our social behavior and ability to integrate into the social fabric, it gives us a different way of thinking about solutions as well. And one of the challenges has been that a lot of the documentation – or the research around this declining mental wellbeing, or the crisis in young people – has focused on just the depression and anxiety symptoms. But it doesn’t give you the sense for what’s really driving it, and what’s really going wrong. So I think the social self really provides a different perspective.

This is an opinion – because it’s really sort of a synthesis, I would say, of the research we have, but certainly would need some more rigorous validation. But it seems to me that what has happened over the last decade – that’s when these changes have started to arise – really has a lot to do with the internet, which has changed the way social interaction takes place.

Compared to 10 years ago, when studies showed that young people had the greatest or highest psychological wellbeing, today what we’re seeing is that each younger generation is successively worse and worse. So it’s not the case that young people are worse off and then as you get older, your mental wellbeing improves. It’s more that when you look at these snapshots, in the past young people were always at the top of psychological well being, and now they’re way at the bottom. I think there are two factors that really are driving this. One is that with the advent of the Internet and Smartphones in everybody’s hands, what we’re seeing now is people are spending 7 to 10 hours a day online. And when you do that, you don’t have time left really to do other things that really enable the social self. And so we’re not building the social self or developing the social self in young people. 

So if we can look at what’s really driving this, or what are the factors that are really compromised in these younger generations now, it’s both the mood and outlook – but even more so, the social self. And if I were to make my best sort of hypothesis about why this is happening, the timing is very much associated with the increase in internet usage and Smartphone usage in the world, because prior to 2010, before the whole Smartphone really came into being in the ubiquitous way it is now, the trend was the opposite – where young people always had the best psychological wellbeing. 

The Mental Health Million project essentially surveys only adults 18 and above, but those 18-to-24-year-olds are the first generation that actually grew up on Smartphones and the internet. So there’s a clear potential developmental aspect to all of this. 

And by my estimation — and sort of a back-of-the-envelope calculation — if you look at generations that grew up before the internet, when you weren’t spending 7 to 10 hours online, you had a lot of time to go out and hang out with friends and just do silly things. Even for my generation, we always thought of it as, you’re out there just wasting time with your friends, and you’re not doing something productive. But really what we’re realizing is that, first of all, by the time we got to adulthood at 18 years old, if we grew up without the internet: We probably would have spent, by then, at least 10,000 and up to even 25,000-30,000 hours just engaging with other people.

Now, when you’re online 7 to 10 hours a day, it’s probably more like 5,000 — so up to one-fifth of what people probably did prior to the internet, and maybe even lower than that. And if you think about social development, like the capacity for prosocial behavior, it may be an innate capacity of humans in the same way that language is an innate capacity for humans.

But it has to be developed, right? You don’t have language unless you learn it, unless you practice it, and you get greater and greater ease with it as you do more and more and more. In the same way, I think that social behavior — it’s a very complex activity, right? You have to read facial expressions, you are reading body language, there’s tone, you have to understand all of these different social norms, and then you have to learn how to regulate your own response, your emotional response, what you say. And you learn how to resolve conflicts, you learn how to cooperate, you learn how to do lots of things. Some of it might seem like you’re wasting time, but it’s not. You are actually learning a lot of this ability to really integrate and relate to others.

Obviously, the second aspect is, then, what you do online — and I think what you’re doing online is creating this very distorted perception of your social reality. And that obviously has ramifications, I think. Lots of people have studied the impact to body image of people seeing these filtered faces, or photoshopped faces, on social media and so on. The virtual environment is more asynchronous. So it doesn’t give you the opportunity for that kind of social development and the kind of embedding in social fabric. And I think what we’re seeing is the consequences of that. But we’re not able to cope with that social environment in the same way.

Biancolli: I was born in ’63, so I grew up long before the advent of the Internet. Yes, you’d hang out in person with friends, and sometimes you would find yourself spending time with people you didn’t particularly like. But you’d learn how to navigate that. And you’d also learn how to be bored. I’ve often wondered whether that could be one of the downsides of the Internet age that we’re – that, as a rule, we don’t know what to do when we’re not online. And maybe that’s part of what we need to relearn or learn how to navigate.

Thiagarajan: That’s the thing, right? If you grow up on the internet — or the more time you’re spending with that – then I guess it takes time to reorient and say, “Well, I could do all of these other things, too.” Because what comes to your mind is what you’ve been familiar with and are doing every day.

There are two challenges. One is that, how do you create a balance in the world – to be able to provide and facilitate the ability to develop the social self – but also get the benefits of the internet?

Then the other factor is that social media, and all of this, happened so fast. And unlike our integration into the physical social world, where there’s so much instruction around it – “Look your aunt in the eye when you say hello to her,” “Sit like this at the table,” “Don’t say that to someone,” “That’s not a nice thing to say,” “Apologize to your brother” – nobody tells anybody what to do online, right? 

There’s no guidance for young people coming in online. And so the environment has become, in lots of parts of the internet and social media, very negative. And part of it is that perhaps we have to say, okay, first of all, we have to develop our in-person social skills and environment – because that’s fundamentally and profoundly important for the human psyche. But we also have this new medium, which offers a lot of great things, but we need to have some kind of guardrails and instruction for children on how to navigate. So that when you get on, it’s not a free-for-all – kids who grow up with no one telling them ever what to do or how to behave. 

Biancolli: That’s interesting – the lack of a finger-wagging aunty saying, “Don’t do that. That’s mean. That’s mean. Don’t do that.”

Thiagarajan:  Exactly. “That’s mean, do you know there’s a person at the other end of it? How would they feel?” And there is none of that. Nobody is instructed before they are let loose in these environments.

Biancolli: So, the data: You spoke a little bit at the beginning about being really surprised by the link between higher income countries and lower wellbeing. But if you could just expand on that, were there any particular ramifications, takeaways, insights that really startled you a little bit?

Thiagarajan: Well, I think it is startling when you think that there’s probably a balance between material prosperity and some of these other, very intangible factors of your social embeddedness, and so on. I guess the surprise, to me, was how much they seem to be in somewhat opposition to each other in the current environment of the world – the current economic state of the world. It’s just that our narrative has always been so contrary to what we’ve always thought: that material prosperity and wellbeing are one and the same. Of course, people have always said money can’t buy happiness. But here, it’s not just happiness that we’re looking at, but the whole host of mental attributes and functioning.

I think the surprising thing is that maybe these are actually much more important – and partly, measuring it in this way starts giving us the opportunity to quantify how much more important, or how important, is this? How important is that? And where’s the balance between two factors? And  I think that’s the real power of having large data like this.

Biancolli: I know there are all sorts of other factors. There are also elements such as political instability, environmental toxins. You talked about unemployment, education. To what extent should policy be addressed? Did you have feelings about how policy should change in response to these insights?

Thiagarajan: We’re in  just year two of this project, and as we progress, we’re going to have much larger data each year – and the idea is that we would sample at least a million people each year around the world. We should get there in the next couple of years or so. And when you get to large scale, you have the opportunity then to understand how all these various complex factors kind of come into play to impact mental wellbeing.

What is it that humanity is trying to accomplish,  right? We’ve talked for decades now just about economic growth – and GDP has been sort of the North Star for countries. But it’s because there has been this conflation of economic growth and material wealth with the prosperity of human beings. 

And when I say “prosperity,” there is only, to me, one metric of prosperity, which is the prosperity of the human mind. Because there is only one arbiter of reality, and that is the human mind. Without that there really is nothing. Ultimately, that’s what serves humanity. It’s not something else that may be at cross purposes to humanity’s prosperity of mind. So from a policy perspective, what really can come out of this data as we move forward is an understanding of what factors and policies – and what elements – are really going to drive that. And therefore, where should we put our efforts from a policy perspective?

Biancolli: Listening to all that you’re saying, I keep thinking this is almost an existential crisis you’re describing. You’re saying this is about the mind. This is about our perception of who we are and how we move through the world, right? Is this a turning point? An existential kind of grappling that we’re going through? How to be well, how to be connected?

Thiagarajan: I believe so. And I think, here’s the thing when you’re talking about a population-wide issue: We’re saying, in terms of mental wellbeing and the decline across generations, we’ve gone from – in people 65 and over – only about 6% to 7% having what you would think of as clinical-level distress to 50%. I mean, this is not trivial. 

So what we’re looking at, with this, is a situation where we’re going from maybe 6% of people having challenges to now half the population. And as these younger people become the older generations – that is, if this number stays the same or even gets worse – that half the population has mental health challenges.

When we look at it from the perspective of the MHQ, we’re talking about mental wellbeing on a functional life-impact scale, which means that when we look at these scores, what we’re able to see is that it has a strong relationship basically to functional productivity in life, right? The lower the MHQ scores, the more number of days people are unable to work or function. 

And so if half the population is unable to work or function, it’s not a problem any medical system is going to be able to solve – because who’s going to solve it? You need some population to be able to do the work, keep the water running and the electricity on, and all of that, and then treating half of the population. 

But that’s from a medical perspective. I think when you think about it more existentially, our ability as human beings to sort of engage with one another – and socially connect with one another – is really what allows us to build and create the world that we’ve created so far. And if we start to see that crumble, what does that mean for civil society, and the ability to come together to actually build the kind of institutions and global cooperation that we would need for our survival?

Biancolli: Even from an evolutionary biological standpoint, we’ve evolved this way because we’re social. One of the things I wanted to ask you about was this quote: 

Perhaps it is not material hardship itself that breaks us, but the lack of belonging and being in it together. Even as we must understand these relationships more fully, these data make clear that to nurture the human spirit we need a new paradigm.

The existing paradigm says, “Okay, when we talk about mental health, you over there are disordered. The rest of us don’t have to think about it.” But you used the word “spectrum” before. How we navigate our lives in the world is all on a spectrum of engagement and the spectrum of mental wellbeing. Is that kind of what you’re talking about, and is that the new paradigm?

Thiagarajan: Where we really need to start thinking about new paradigms is: What will serve us? A system where only 10% can thrive is not an effective system – and so I think that’s the paradigm that we need to start thinking about. How do we move toward a system where more people are thriving rather than more and more people falling off this cliff of mental wellbeing, where you are in a zone of negative functioning or inability to function effectively? Which is sort of how our scale is constructed. So when we construct these metrics, those who end up on the negative end are folks who are suffering, are struggling to such a degree, that it’s having a severe impact on their ability to function in the world.

Biancolli: I have to ask: What gives you hope? Moving forward, what are your aims and goals – and is there anything in particular that gives you hope for the future?

Thiagarajan: Human beings have been resilient through history. Human history is full of dark times that have ultimately resolved in some way, and so I think, just from that perspective, we should all have hope in that. But that doesn’t mean necessarily that you sit back and hope that it will just happen by itself. I think all of us have to be active participants in it. And what we hope to provide to enable that journey is this sort of large-data perspective that really allows us to see how we’re changing in real time – and what kind of things are actually driving those changes, and allow that dialogue and debate to happen?

So our data is available to all research, nonprofit, and academic researchers to really look at all these relationships. And I think if we start to think about understanding what’s really the most important driver, and what kind of things will really move the needle the most – and have this as a way of measuring it and tracking – if we are moving the needle, I think that can be really helpful. 

Biancolli: Well, thank you. Thank you so much for taking the time to speak with me today. This has been terrific.

Thiagarajan: Thank you so much.

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“I like to think of myself as a healer,” says Stuart Shipko in the introduction to his latest book, a compact volume that’s part pandemic diary, part memoir of his career in psychiatry—and part reflection on the profound, often-indescribable nature of healing itself. And as he makes clear, that can include more mystical transformations that fall outside the strictures of medicine.

Early on, he explains, he tried his hand at such alternate approaches, incorporating the lessons learned: How healing happens, and what healing is. He peppers the book with tales of such transformations, including a few that ultimately resolved in death. Among them are the woman, unconscious and nearly gone, who suddenly popped awake to say goodbye to her family; the man he healed of leukemia only to die of an abdominal aneurysm; the woman dying of heart failure whom he hypnotized, helping her eat again; the man with the horrifically fractured femur who healed overnight (“You did it doc, I’m fixed”) and promptly threw a party, overdosed, and died.

Ultimately, Shipko stepped away from such efforts and turned his career toward hospital consultations and expert testimony. (He’s also the author of Xanax Withdrawal and Surviving Panic Disorder: What You Need to Know.) But they were formative experiences, he writes. “I retained a sense that people are not machines, not easily reduced to an algorithm. . . Medical science may be less important than I thought.”

For readers of MIA, the most compelling parts of Standing Still and Looking Back are his reflections on the shifts in psychiatry and the ever-creeping influence of mechanistic thinking.  When he first trained in the field, depression was treated with therapy and regarded as “limited”—a duration of 6 months, perhaps. Some tricyclics were used, but short-term only; Prozac and other SSRIs didn’t arrive on the scene for another six years. Once they did, clients started going on them forever; depression became a “chronic relapsing condition”; medications became the “centerpiece” of practice.

Supporting people in their pain, and getting them off of medications, meant supporting them as human beings. “It did not require magic healing powers,” Shipko writes. Even when he did heal people outside the realm of medicine, he was only giving them permission to heal themselves—to “do what they needed to do,” whether that meant living or dying.

Sprinkled through the book are COVID-19 diary entries tracking the course of pandemic and politics, isolation and fatigue, emerging vaccines and hesitancy, all of which will feel familiar (almost too familiar) to an exhausted populace. But such ruminations dovetail with his tales of psychiatry, from which he retired at the start of the lockdown. Its practice had become “almost too painful,” he says. “It’s too much about the medications now, medications that are generally harmful over time and often never needed in the first place. Practicing psychiatrists are just shooting in the dark, drug dealers with a fancy credential.”

In the end, he adds, “The drugs often create mental illness instead of curing it.”

*****

The Grieving Brain: The Surprising Science of How We Learn from Love and Loss by Mary-Frances O’Connor (Harper Collins)

With this clear, confirming, compassionate, beautifully readable book, Mary-Frances O’Connor has written something more than a neurological exploration of the brain’s behavior as its owner grieves. She’s pulled together more than a discourse on the neurons scrambling to problem-solve when a beloved someone dies, on the neurological stamp that lingers on gray matter, and the real sense—verified by research—that someone we bond with in life still holds a place on the map inside our brains.

She uses all of that science to underscore the profound humanity in all who, moving forward after some terrible loss, feel themselves pulled into competing realities at once: Into the past, filled with death. Into the present, filled with life. In the odd conjunction of both, tacking from a neural landscape where the departed still takes up residence—and in the nitty-gritty dimensions of the world around us, where they’re unquestionably, irrevocably, painfully gone.

Anyone who has ever buried someone they love will feel seen by O’Connor, who uses both her research bona fides in neurobiology and her humanistic grounding in psychology to counter so many enduring assumptions about grief: That it plays out in neat chronological stages; that it reaches an end-point of closure and healing; that the gaping hole left by someone’s absence should close within some set time; that it isn’t normal, whatever that means, to collapse in tears and fling a coffee cup across the room before picking yourself up and getting through the day. (And if you find yourself saying I did that, too, you’re not alone.)

It’s the picking up, she notes, that makes the difference—and reminds us that the “dual process” of sorting through death in the past while pursuing life in the present is, well, messy. Resilience means pushing ahead in spite of it. As she writes: “It is not about believing that you are now a broken person . . . . It is about noticing how it feels at that moment, letting your tears come, and then letting them go. Knowing that the moment of grief will overwhelm you, feeling its familiar knot in your throat, and knowing that it will recede like the rain.”

The Grieving Brain was published before the latest DSM revealed its freshly minted “Prolonged Grief Disorder,” which caps grief at one year. But her book feels like a rebuke. Throughout, she makes a distinction between grief—the huge, acute wallop that knocks people sideways in repeating spasms of pain—and grieving, an ongoing effort in which the bereaved forge new lives and connections against a backdrop of loss.

Grieving is learning, she tells us. Living after a death doesn’t mean wiping it clean and moving on; the loss will always be there. It means “moving our attention from thinking about the past to thinking about the present and future. . . If we can stop judging ourselves, if we can have compassion for ourselves because we are human and because this human life comes with grief,” she writes, “we may find it easier to connect with others as well.”

*****

I Hear the Black Raven: A Petite Memoir by Claire Ishi Ayetoro (Equal Age Publishing)

I continued to wander the woods. Naked, unashamed, and unafraid. In and out of conscious awareness. I was driven reflexively, my brain and body hostage to my subconscious mind.

That’s just one brief excerpt from just one account of extreme states experienced by the author—and the paths she took through them, both literal and figurative. She does not shy from any hard truth or difficult revelation. As the subtitle suggests, the book is, indeed, small—in print, 4×7 inches and 164 pages. But it is as poetic as it is petite, full of plainspoken reminders that life is neither linear nor tidy. It’s far too complex.

“Listen to the raven,” says Claire Ishi Ayetoro in her “prelude,” underscoring the creature’s significance in varied cultures as a harbinger of good or ill. We all have black ravens in our lives, she says, revealing truths that we might not want to hear. The book is, in a sense, an account of her own efforts to listen; each chapter opens with a poem paired with a shadowy image of the bird.

Ayetoro—a nom de plume—is, as she makes clear, not skeptical of the standard disease model. She accepts her own diagnosis (“bipolar disorder is a beast”) and the drugs used to treat it, no matter how problematic they are, and cautions against resisting treatment. Yet she’s also candid about the side effects, rattling off the list from weight gain and insomnia to apathy and suicidal ideation.

And no matter what her stance on psychiatric drugs and the disease paradigm, she’s still human. She still has her own story to tell, and she tells with frankness and gut-punching impact. Late in the book she describes another extreme state—sparked by a prayer conference—that led to rocketing ecstasy, then spiraling doom, then the conviction she possessed two souls. After that, she bluntly details the gun she purchased and the plans she made to end her life.

Gradually, quietly, her small document of emotional and mental darkness turns toward light: After years in therapy, in and out of hospitals, trying different combinations of drugs, she’s “now in a good place.” And the black raven, we realize by the end, is not a harbinger of death but a messenger of hope.

Her song reached the depths of my soul. “My dear, light has come to you. You are transformed. Ayetoro, peace is coming. When it comes, embrace it and keep it close,” she says. “It is hard earned but can be lost.”

*****

Sickening: How Big Pharma Broke American Health Care and How We Can Repair It by John Abramson (Mariner Books)

Readers of Mad in America and other platforms critical of psychiatry will find nothing to raise eyebrows in this latest book from John Abramson, author of 2004’s Overdosed America: The Broken Promise of American Medicine and a frequent, dissenting voice on the topic of practices corrupted by Big Pharma and practitioners who fall in line. His new work brings that same skeptical perspective on a range of drugs—not just psychiatric drugs, per se—that have been widely pushed despite sketchy efficacy and documented harm.

These include Merck’s Vioxx, the now-recalled anti-inflammatory drug, which “more than doubled the risk of heart attack, stroke, and blood clots” and caused between 40,000 and 60,000 American deaths; Pfizer’s Neurontin, originally marketed as an epilepsy treatment but prescribed off-label for people diagnosed with bipolar disorder; new generations of insulin analogs, no more effective against Type 2 diabetes than long-established treatments, which “jacked up the price to unimaginable levels” and likely led to uncounted deaths among those who couldn’t afford it; and the statins being prescribed for those at low risk of cardiovascular disease without any real benefits.

In each case, the history of each drug’s ascent is an account of science stained by money—overtaken by it, subsumed by it, wiped out by it. In the rush to make wads of revenues, the actual, rational, methodical weighing of negatives versus positives fall by the wayside.

As he points out, six out of every seven clinical trials are commercially funded and, as a result, 34 percent more likely to “report favorable conclusions.” Not surprisingly, “97 percent of the studies most frequently cited in the literature are funded by industry.” This same pro-Pharma bias is evident, too, in review articles, meta-analyses, and clinical-practice guidelines, which are seven times likelier to recommend a drug when one or more authors had financial ties to its manufacturer. Also not surprisingly, roughly two-thirds of industry marketing budgets target prescribers.

Physicians are, he says, the “unwitting agents” in this wholesale dominion of a system, corrupted by money, that has contributed to sagging American healthcare and downward trends in American lifespan. He uses Plato’s allegory of the cave—“mistaking the shadows cast on the cave wall in front of them for reality”—to explain their unhelpful prescriptions and propagation of lies.

“My purpose in writing this book: to show how, by the skillful use of the tactics. . . pharmaceutical firms influence the behavior of health-care professionals,” he writes. “No longer the learned intermediaries our patients expect us to be, we have unwittingly become ‘unlearned’ intermediaries, serving the drug companies’ financial interests rather than our patients’ medical needs.”

Again, none of this will surprise anyone already versed in the problems—the harms and horrors—of psychiatry’s business-as-usual. But it’s still worth saying, and saying loudly.

***

MIA Reports are supported, in part, by a grant from the Open Society Foundations.

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