Exploring the Mysterious Racial Gap in Psychosis Rates

Alison Stewart: This is All Of It on WNYC. I'm Alison Stewart. We wanted to acknowledge one of America's most beloved writers, Nikki Giovanni, who died Monday. She was a public speaker, an educator, a poet, and an author who published more than 25 books, starting with 1968's Black Feeling, Black Talk. She was just 28 years old when she interviewed James Baldwin for the PBS TV show SOUL. She was a National Book Award finalist for her 1973 work about her life titled Gemini. Her admirers ranged from Oprah to Barack Obama to Teena Marie, who name checked her on the dance hit Square Biz.
Nikki Giovanni was 81 years old. Let's listen to one of her poems. Here she is on NPR in 2013 reading Werewolf Avoidance.
Nikki Giovanni: I've never blocked before, so this is new territory for me. I do poet, though, and that is always somewhere in the Netherland, I think. Poetry is employed by truth. I think our job is to tell the truth as we see it. Don't you just hate a namby pamby poem that goes all over the place saying nothing? Poets should be strong in our emotions and our words. That might make us difficult to live with, but I do believe easier to love. Poet is garlic, not for everyone, but those who take it never get caught by werewolves.
Alison Stewart: A new article in The New York Times Magazine takes a look at a troubling question in the field of psychiatry. Why do Black people experience symptoms of psychosis at nearly twice the rate of white people? According to the National Institute of Mental Health, psychosis is "a collection of symptoms that affect the mind where there has been some loss of contact with reality." For example, hearing external voices, experiencing visions or paranoia. It's a common symptom for conditions, like schizophrenia and similar disorders.
Often these cases arise in patients who have a genetic predisposition to psychosis, but they usually need to be a trigger of some kind, some kind of altering traumatic event. Sometimes these events take place during encounters with, for example, law enforcement or other areas of society that are unfortunately not free from systemic, institutionalized racism. Joining me now to talk about his reporting, please welcome Daniel Bergner, a New York Times contributing writer and the author of many books. He recently wrote a piece called America’s Hidden Racial Divide: A Mysterious Gap in Psychosis Rates. Hello, Daniel.
Daniel Bergner: Hi, Alison, thanks for having me.
Alison Stewart: Also, joining us is Dr. Deidre Anglin, a clinical psychologist who spent her life researching disparities and mental health processes and outcomes along the lines of race. Deirdre, thank you for joining us as well.
Deidre Anglin: Thank you for having me as well, Alison.
Alison Stewart: Deidre, psychosis is not so much a diagnosis as a symptom of different conditions. What are some of the different ways psychosis can manifest?
Deidre Anglin: Psychosis can manifest actually on a continuum. A lot of the research now suggests that folks may have a psychotic experience that doesn't meet criteria for something, like schizophrenia, but it might be sort of hearing a whisper or sort of seeing an illusionary kind of experience, and then it might go away, right? For some folks, these experiences create distress, and they are more than just fleeting and they persist. For those folks, they may also have anxiety and depression, and that makes their mental health status even much more burdensome.
Then all the way to the end of the spectrum, where you have folks who have a clinical psychotic disorder, such as schizophrenia, where you're having active hallucinations and thoughts that aren't in line with what most people think called delusions, where they then really drive your behavior or drive how you see the world in a way that isn't like what how most people see it. Often when it gets to that end of the spectrum, Alison, folks tend to withdraw because the world can feel more scary, because they're having a lot of internal symptoms, internal thoughts, internal hearing voices, et cetera.
Psychosis is a symptom spectrum that can be at the very low end, where it's more common, where 8% to 11% of the population may experience a psychotic experience, all the way to schizophrenia, where it's much more rare in 1%, 1% to 2% of the population.
Alison Stewart: Daniel, your article focuses on the racial disparities that we find in the data about who experiences psychosis. First of all, how did you come to the subject?
Daniel Bergner: I've been writing around this area for a long time. My last book, called The Mind and the Moon, is a look at alternative ways, alternative perspectives on coping with psychosis. It's a really personal look, featuring my brother's story. Through that, I became aware that there was this consistent data about this disparity 2 to 1, and upward of 2 to 1, I should say. This spans from the United States to Europe. Yet, and I brought this up with Deidre arly on, no one was writing about it.
No one in the mainstream press had touched it, which just seemed baffling to me, so I just went to my editors about a year ago. I said, "Just let me immerse myself in this issue. The data is not going away. It's not weak data. Why are we seeing this consistent disparity?"
Alison Stewart: Daniel, what are some of the initial things you learned about this issue that made you want to explore it even more?
Daniel Bergner: Well, I'd put the things in two categories just for the moment. One is, and I opened the story in The New York Times Magazine with this man, Earl, who I think many readers will find surprising because Earl has been in and out of institutions since he was a kid, put-on-heavy-duty antipsychotics, et cetera. He's talking to me about Hemingway, he's talking about The Old Man and the Sea. He's talking about striving despite feelings of overwhelming futility, and he's reaching out to help others.
For one thing, he's just recasting, I hope he's recasting, our preconceptions, which often just want to put push people with psychosis aside and out of the frame. The second thing was just the deeper I got into this, and as I got to know Deidre's research and research coming out of Europe with colleagues of hers, I just thought, "Wow, people are coming at this in ingenious ways, trying to isolate causes." Even though it's very difficult to prove causation, it's nevertheless possible to get close to causation. I'd say suggestions of causation, very close links between the experience of discrimination and the experience of psychosis.
Alison Stewart: Deidre, in Daniel's article, he describes a dynamic between genetic predisposition and a trigger that sets off a psychotic condition. What kind of triggers are we talking about?
Deidre Anglin: I think some of the triggers that you could think about are very much connected to trauma. Racism can be very traumatic. You could think about developmentally, a time where you are struggling with something in your family, a loss, a death in your family, or abuse, something like that, or a very scary encounter with the police, like that was mentioned in the article. The trigger can be even exposure to certain substances. There's a lot of different potential triggers, but I think it's not necessarily one trigger, then you're psychotic.
It's not one-to-one correspondence. I think one of the things that is relevant here is there's an accumulation of stress, triggers, and the accumulation of traumatic experiences over a period of time that can then sort of sensitize you to then have potentially express psychosis. That's one of the things that I think that's relevant here. These things start early in childhood. It's not like you just have one moment of a breakup and then you become sort of psychotic. It's definitely an accumulation over time.
Alison Stewart: Deidre, I want to explain something, and you said this in your talk at Columbia. When you're talking about racism, you're not talking about one person says something bad to you, right?
Deidre Anglin: Right, exactly, Alison.
Alison Stewart: Would you explain that a little more?
Deidre Anglin: Thank you for bringing that up. When I talk about racism, I really think of it historically and structurally in the institutions that we can't avoid. We all have to go to school. We have educated. We have to live somewhere in housing. We often have contact with the healthcare system. These systems, unfortunately, there's a legacy of structural racism within these systems. That means policies, if you go back to like redlining even. Jim Crow era. There are policies that dictate where people live. There's no segregation technically, but there is.
These kinds of things are structured where the further you are from perceived whiteness to some degree, the more likely you will are to be at the bottom of that hierarchy and experience disadvantage. This affects neighborhoods, communities, families, individuals in families, and over generations. This is not something that can just be like one bad word said to a person and then they feel sad. This is something that people live in and have to experience day to day through childhood, even in schools.
This is a structural process that has a long legacy in this country and in many countries. This is what I think is affecting the social environment that people are exposed to day to day that can make you more susceptible for mental illness, but also including psychosis.
Alison Stewart: Listeners, we'd like to hear from you if you have any friends or loved ones who have been through episodes of psychosis. We're also looking at experiences from the Black communities. We'd like you to give you a call. We'd like you to give us a call. 212-433-WNYC, 212-433-WNYC. Maybe you yourself have periods of psychosis. We want to hear about your experience. We want to know what it's like. 212-433-9692, 212-433-WNYC. My guests are Daniel Berg-- Hey, Daniel, pronounce your last name for me, please.
Daniel Bergner: Bergner.
Alison Stewart: Thank you. Daniel Bergner from The New York Times, contributing writer. Deidre Anglin, she's professor of psychology at City College. Okay, Daniel, you learned in your reporting that one of the links between race in particular and psychosis is termed "social defeat." What does it look like to the people who you talk to who experience the psychosis?
Daniel Bergner: I think it's better to talk actually, in lay terms here than in strict psychiatric terms. Let's talk about just a sense of helplessness. It's just a particular manifestation of discrimination. We should be specific, probably, because I think Deidre's research specifies perceived discrimination. What I'm getting to is there's this kind of loop. If you're perceiving discrimination, you have some predisposition. There's a feedback loop that's taking place that's excruciatingly painful and puts excruciating stress on the psyche. That's what I was hearing over and over as I was immersing myself with people like Earl.
I just want to add one bit of statistic, if I might, about the nature nurture issue, because I get this all the time. It's like psychosis and particularly psychotic disorders or genetic disease. That's it. I don't want to hear any more about it. I have on my desk probably the most mainstream and pretty conservative American Psychiatric Association textbook on schizophrenia. Even there, they will cite two really telling numbers. If you're identical twins and one identical twin has schizophrenia, the other has a 40% to 50% chance of having the disorder.
Now, that is a huge chance, but it's still with identical genes leaves a 50% to 60% element of environmental factors. If you have one parent, it's a 6% chance of also having schizophrenia. That leaves over 90%. There is a lot of room for environmental factors, and I think that's what researchers like Dre are really focusing in on and illuminating.
Alison Stewart: Daniel, part of this is otherness. You cited a study from back in 1932 about psychosis rates among Norwegian immigrants in Minnesota. What does suggest to you about the way the link between psychosis and any sort of outsider status?
Daniel Bergner: Look, being an outsider is stressful. Being a minority outsider is stressful. One of the moments I captured in the story with Deidre's help, is just the feeling that there's a kind of hyper vigilance surrounding you, and thus a kind of hyper vigilance comes up from within. That itself can be a really predatory set of feelings. I think for any listener, if you just close your eyes and imagine yourself as notably, markedly outside the dominant group.
Then in a discriminated against minority, you're going to begin to feel what that would be like and then multiply it times 10 if you have a kind of predisposition to somewhat delusory or hallucinatory thinking or voices.
Alison Stewart: Deidre, that study was from 1932, and it focused not necessarily on race, but on immigrant status and nationality. What's comparable and then what is incomparable between that sample group and the psychologies of Black Americans, especially when it comes to triggers?
Deidre Anglin: In thinking about what Daniel just said, I think about what's also the attribution associated with your social status. Some folks have nothing in particular other than being different. When you have things like you're potentially more likely to be feared, more likely to commit a crime, or burden to society, when you have a lot of negative and where people might fear you, that's going to bring forth another set of potential internal reactions, concerns, and vigilance in terms of as you walk the street day to day.
I think the kind of stereotype or the kind of attributions associated with your minoritized status is going to have an impact on how you experience racism and then what is salient for you. Then when things go wrong, so to speak, in terms of your mental health, that might shape that as well. I remember that seeing that in my experience, when I worked more clinically with patients with psychosis who were Black, the kinds of things that they were ruminating on or having delusionary kinds of thoughts about, it wasn't a coincidence that they often involved in people, the police, potentially coming for them, or for the women, it was around being potentially attacked sexually.
This was a part of their delusional system, but it wasn't completely devoid from what could possibly happen. I just wanted to kind of highlight, like these delusions aren't in a vacuum. They're often very connected to what is the potential experiences that folks have either had that are traumatic or that they may be more vigilant to because it's happening in their community.
Alison Stewart: Let's take a call. This is Jennifer calling in from Wilton. Jennifer, thank you so much for calling All Of It.
Speaker 5: Thank you for letting me on.
Alison Stewart: Tell me your story.
Speaker 5: Go ahead.
Alison Stewart: Yes, tell me your story.
Speaker 5: I moved here in the early 1970s. My mother was Black, my father was white. I could pass if I really tried, but my mother couldn't. If boyfriend's family found out that I had a Black mother, they broke up with me. This happened about four times. That's one thing. Now, I'm fine. I'm married to a white man. The psychiatry of this-- I have had psychosis. It is horrible. It's not that I don't try, but I cannot control it. Somebody cut in front of me at a gas station, and I just lose it. All my reason is out the window.
I don't take a weapon against them, but I'll scream and become ridiculous. Sometimes I don't remember everything that I've done, like the gym that I've gone to. I yelled at somebody for being on-- I forgot, something in the gym. I don't want to be tossed out of the place, but sometimes I have no control. That's the story.
Alison Stewart: Thank you so much for sharing that, Jennifer. We got a text that says many Black and brown New York tenants are traumatized by landlord harassment. Being pressured to give up their apartments in order to find safety is a secondary, complex trauma. Deidre, do you want to speak to that?
Deidre Anglin: Yes. Complex trauma is definitely very relevant here because when you think of leaders, like a psychological theory, Maslow's hierarchy of needs, right? At the very bottom is just like safety, like being able to be in a space, being able to have food, being able to have your basic needs met. When that is jeopardized consistently in a way that feels like you don't have any control, that can be traumatizing, especially if you think about, as a parent, if you can't give that to your children, that's another level of trauma.
I think there are a lot of various ways in which societal racism and other isms enact themselves in ways where people don't have their needs met. In a country where so many people have their needs met, it can be very confusing. Like, "Why is this happening to me?" That can be one aspect of how complex trauma can manifest not having your needs met.
Alison Stewart: Daniel, on the page for this story. It's a beautiful story. It's a long story. There's a place for comments, and there are a lot of comments in that section. I notice, the big argument, I think you touched on this earlier, and I'm paraphrasing here, is that the overwhelming cause for schizophrenia is genetic and outside factors can trigger or exacerbate the condition. To say that this is around Black folks only experience, that's not enough to explain why it happens to so many people. Two questions.
You're in the there having the argument, which I like. First of all, why would you respond to commenters when they have a strong opinion about your piece?
Daniel Bergner: I do it sparingly.
Alison Stewart: But you're in there.
Daniel Bergner: But I'm in there. I did do it this time around. Primarily, you're right. It's. It was about this argument that it's purely a genetic disease or disorder. That, not to belabor you with too much history, but around 1980, the field of psychiatry, especially in the United States, really clung on to this idea of a kind of medicalized biomedical model for our psyches and our psychological disorders. I think it's pretty clear by now, an overreach, but the public still sits with it and we cling to it. Perhaps we cling to it most where the disorder is most unsettling, and that's psychosis.
I guess I responded to those commenters because I wanted to shake us free of that, so that we could then really grapple with a profound problem that, again, the mainstream press, and thus most of the public was having no idea about, was completely ignoring. We had to get free of that it's all genetics in order to look with true empathy at people like Earl. Earl was just one person. I could have picked any number of others who can, I guess just to put it in writer's terms, who can really both break our hearts and wake us up.
Alison Stewart: Deidre, what advice would you give to someone who's experiencing this in their own life? Maybe a loved one who's going through something like this?
Deidre Anglin: First of all, hope you have support. Because honestly, it's, it can be stigmatizing. Psychosis is very stigmatized in our society. Sometimes you might reach out to family, and then not experience what you hope, which is open arms. One of the things that I think even Tom Insel, who was the head of NIMH for a long time noted was that we have these new programs called Coordinated Specialty Care Programs, and they are specifically for folks who might be having these like experiences early and not really sure what's going on, and you can go to these programs.
For example in New York, it's called On-Track New York, but they have them all across the United States. It's not like the first thing you do is they give you medicine, put you away type of thing. They really take the time to evaluate you, to evaluate your needs, to involve your family, to educate and to see where you are on the spectrum of psychosis and give you the support that you need, and not just medication, but psychotherapy, vocational. I worked with some of the folks in these programs, and they were Black folks and they've had generally positive experiences.
I'm not saying everybody's going to have a positive experience, but they felt heard. It took a while for them to trust because it's an institution, and again, it's another institution, but took a while for them to trust. They were able to really get the help that they needed. I would advise to not necessarily go right to the hospital, because they're in Queens, Brooklyn, Bronx, Manhattan, you have sites all over, they're at Lenox Hill. Their folks who work there are really trained to involve the full family, key members in the treatment process, and make it a shared decision-making process where you have some agency.
It's not you're just being medicated or told what to do. I would really strongly advise folks to look that up online, On-Track New York, because there's testimonials there as well from folks who have gone through it, who've been there. It's a very diverse group of folks that they highlight on the website. It's very inspiring, especially for someone like me who's seen the worst of it, but also has seen people really come out of it and be successful and powerful. I don't want folks to leave with a sense of like, "Oh, psychosis is like a death sentence." You know what I mean? It's like folks have really-- Again, intervening early is critical in the process.
Daniel Bergner: One thing I would add, just in addition to On-Track New York, the Wildflower Alliance, which unfortunately is not based in New York, it's based in Massachusetts, but you can look up Wildflower Alliance online and it will connect you to local places. That's the organization Earl works with, and it too provides support and probably in more alternative ways than On-Track, I think in really innovative, promising ways. Again, to echo what Deidre is saying, ways that offer hope, that aren't a sentence of doom, in fact, are quite the opposite.
Alison Stewart: If you'd like to learn more about Earl Miller and more of the story, you should definitely read the America’s Hidden Racial Divide: A Mysterious Gap in Psychosis Rates. My guests have been Daniel Bergner, New York Times Magazine contributing writer, and Deidre Anglin, professor of psychology at City College. Thank you for your time.
Deidre Anglin: Thank you.
Daniel Bergner: Thanks.
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