Ep. 29 / Fighting the Stigma of Mental Illness and Neurodiversity with Dr. Roy Richard Grinker

Dr. Roy Richard Grinker
Dr. Roy Richard Grinker

Welcome back! Today's guest is Dr. Roy Richard Grinker, Professor of Anthropology at George Washington University and Editor-in-chief of Anthropological Quarterly. We're discussing his newest book, Nobody’s Normal: How Culture Created the Stigma of Mental Illness, which came out in January 2021 from Norton.

Dr. Grinker conducted research on the epidemiology of autism, which he discusses in his previous book, Unstrange Minds: Remapping the World of Autism. Unstrange Minds was inspired by his daughter, Isabel, who was diagnosed with autism in 1994, and documents Grinker’s global quest to discover why autism is so much more common today.

Nobody's Normal cover Grinker

Building on Unstrange Minds, and based on research in Africa, Asia, and the U.S., his new book, Nobody’s Normal, tells the uplifting story of how we are successfully challenging the stigma that has long shadowed mental illnesses.

I found Nobody's Normal to be an accessible yet deep dive into how the advent of capitalism irrevocably changed Western society by creating many of the boundaries we take for granted today, including wellness and illness. Grinker challenged many of my assumptions about autism and how we as advocates engage in our push for more understanding and acceptance of neurodivergent individuals, and I am still thinking about his work many months after I finished reading.


🎧 Want to listen? This post is based off of Episode 29 of the Neurodiverging Podcast! Listen on Apple Podcasts Google Podcasts | Spotify


Show Notes:

  • Learn more about the author, Dr. Roy Richard Grinker: https://royrichardgrinker.com/
  • Buy Nobody’s Normal: How Culture Created the Stigma of Mental Illness on Bookshop | Amazon
  • Buy Unstrange Minds: Remapping the World of Autism on Bookshop | Amazon
  • If you'd like access to the Patrons-only aftershow, plus many other perks, please consider pledging $1, $5, or $10 a month to fund Neurodiverging. Find out more and pledge today at patreon.com/neurodiverging.

About Neurodiverging

Neurodiverging is dedicated to helping Neurodiverse folk find the resources we need to live better lives as individuals, and to further disability awareness and social justice efforts to improve all our lives as part of the larger, world community. If you’re interested in learning more, you can:

  • Click the subscribe button to make sure you are notified when there’s a new episode!
  • Take a look around at previous podcast episode transcripts and blog posts here on neurodiverging.com. Looking for something specific or have a question? Send me an email at neurodiverging.podcast@gmail.com

Speaking of Patreon I would love to give a very, very warm thank you to Zach, David, Theresa, and Sarah, Anon, Teresa, autstronaut, Klara and Marti! Thank you all so much for supporting this episode of Neurodiverging!


Transcript for Ep 29: Fighting the Stigma of Mental Illness and Neurodiversity with Dr. Roy Richard Grinker

[00:00:01] Danielle Sullivan: Hi, Richard, thank you for joining us a Neurodiverging today. How are you doing? 

Richard Grinker: I'm doing great. Thanks for having me, I'm excited to talk to you about my book. 

Danielle Sullivan: I'm very pleased. So, can you start by just telling us a little bit about your book, I really loved reading it, it was a great read.


Background of Nobody's Normal

[00:00:16]Richard Grinker: Thank you. Well, it's called Nobody’s Normal: How Culture Created the Stigma of Mental Illness. And I really intended it to be an upbeat book. So many books about mental illnesses, developmental disabilities are about tragedies, and about unhappiness. And I really have seen so much that is positive. I really felt like I wanted to figure out why I thought so positively about things these days. What were the factors that led us to these positive changes? And if we can identify those factors, can we reinforce them and continue on the same path? 

[00:01:00]Danielle Sullivan: Yeah, it was a really positive read, and it was also very accessible, for being sort of an academic book that covers a long period of history, it was a very accessible book, which I really enjoyed and appreciated. Was that something you set out to do specifically when you were writing it, or a happy accident? 

[00:01:18]Richard Grinker: Well, yeah, definitely. One of the things that you can do when you get to be a little more senior, and you feel like your job is secure, is you can experiment and try to write in new ways. And I've been writing for the general population now for about 20 years. Probably, this is my most accessible book.

But in 2008, I published, Unstrange Minds: Remapping the World of Autism. And it was a book that sought to trace the origins of the autism spectrum, and also to weave within it the story of my own daughter's experiences with autism. So, she was born in 1991 and she was diagnosed when she was a little over two, very early diagnoses in those days. And she is now almost 30 years old. And she was born just at the time that autism was becoming a much more popular term, and the spectrum was broadening and stigma of autism was decreasing, and people weren't thinking of it as this narrow definition that it used to be. 

And now she's living in this world where everybody seems to know what autism is, and where we have this spectrum broadening considerably and there are so many more opportunities for people with autism. And so that's not the kind of thing you can write about through an academic lens. It's something that you want people to get engaged with.

So when I approached this new book, Nobody’s Normal, I wanted to do the same thing. Not so much with my daughter, but my family. My great grandfather was a psychiatrist. My grandfather was a psychiatrist. My father was a psychiatrist. I'm married to a psychiatrist, I work on mental illness. And I thought, why not weave the history of psychiatry in, with that four generations of work in my family on mental illness, to use that as a lens for seeing how much has changed. 

[00:03:28]Danielle Sullivan: It was a really interesting approach and the personality, and all of your family history, that's woven into the book and the emotional resonance of your experience with your daughter's diagnosis and your daughter's life on the autism spectrum, really came through in the book and it made it like you said, much more engaging, much more able to be leaned into emotionally.

I also just loved looking at stigma and mental illness through the lens of, this is a human-created structural institution of how we think about health, how we think about the medical system, and just the history of the profession of psychiatry, could be really dry but wasn't, it was really, really interesting.


On the Spectrum

[00:04:08]Richard Grinker: Well, thank you. It is really amazing how recent it is, that we have accepted certain kinds of fixed categories, like, the idea that there are distinctly mental disorders versus biological disorders, or even race and ethnicity.

I mean, the history of capitalism is the history of making boundaries. And what we're doing now is we're challenging those boundaries, not only in the psychiatrist manual, the DSM but just in everyday life to talk about… when somebody says today that they're on the spectrum, maybe they would meet the criteria for ASD in a scientific study. 

[00:04:57]Danielle Sullivan: It doesn't mean as much as…

Richard Grinker: But maybe they wouldn’t. 

Danielle Sullivan: Yeah, maybe they wouldn’t. 

[00:05:04]Richard Grinker: And I think we're dissolving some of these boundaries to see ourselves, not as you have this or you don't have this, you're normal or you're abnormal, but that we all exist on a spectrum, on a continuum of all kinds of different things, whether it's autism, or anxiety, or depression, or whatever.

And this is not to say that we shouldn't do research and treat people and try to alleviate suffering, it's just that we're on a spectrum, and for some of us, we might go over the border into where we're suffering enough that we need to help. Anxiety, for example, is something all humans have to have to survive. If I didn't have anxiety, I would not look both ways when I cross the street, and I would be hit by a car and not be here. So, I have to have anxiety to survive. But does that anxiety perhaps at some point in my life, bleed over the boundary where now I can't sleep, or I can't work or my social relationships are impaired, and I need help.

So, there are people who are really critical of my view, that it's good to use mental illness developmental disability terms colloquially, they say, “No, that masks the real suffering of the real serious illness”. But I kind of think that when we use these terms colloquially, when you say if you're Neat-Nick, you're a little OCD, you're socially awkward, you say you're a little on the spectrum, that we're disarming those words, we're making it harder for them to hurt because they become part of our everyday discourse. And so you know, I have a difference of opinion there.

[00:06:49]Danielle Sullivan: It is a hard thing to think through, because I know, for example, just speaking from my background with autism communities, that a lot of us have really struggled first to get a diagnosis, especially if we're like me, a woman born in the 80s, that a lot of us haven't been diagnosed or discovered to have “autism” until we're in our 30s.

So, we've lived a long life of not having the supports we needed. And we've really struggled to get to the point where we can be autistic, can call ourselves autistic. And so, it can feel disempowering to take that label and apply it more widely to other kinds of people.

But at the same time, I hear what you're saying that, in lots of ways, the idea of autism or anxiety or any other mental health issue, can be used as a stigmatizing term and can be used to disempower people in the other direction. And so, for me, it's all about finding the language we can use to get everybody feeling empowered as best we can and able to access the treatment and support that they need, yeah.


What's the Diagnosis For?

[00:07:52]Richard Grinker: Well, when you're talking about empowerment, that's what the great thing about the Neurodiversity Movement is that it is like the civil rights movement, like disability rights movement, like transgender rights movement, it is a movement in which people take ownership of a term and they say, we're going to define ourselves by ourselves, and we're not going to accept some previously applied definition that was used to marginalize us. And I do think it's important to understand that the value of a concept, like any diagnostic concept, whether it's autism, or anything else, is different at different stages in life. 

[00:08:28]Danielle Sullivan: Absolutely.

[00:08:29]Richard Grinker: And so, for a 30-year-old, having this framework of autism can explain things to you, you can say, “Oh, I understand now, why I'm good at this, or I'm challenged at that”, I can understand, it's a framework that helps me to understand myself and even communicate about myself to others.

But if you're five years old, the word Autism is important for a different reason, because it drives a service, it drives your special education, or it drives your accommodation, or it drives the kinds of interactions that your parents or your friends, your experts or whoever you think are useful. So, a diagnosis is only as good as its value to us at a particular point in time. 

[00:09:24]Danielle Sullivan: Absolutely. Yeah. I agree with that. And we sort of danced around it a little bit, but you mentioned capitalism a couple of times as the system or the force that really brought about some of the boundaries that we're currently living under and some of the institutional structures we're currently living under. And to get more into the meat of your book, the formation of capitalism was when the idea of the ideal person changed, and I was wondering if we could talk… I think we have a very different understanding of, historically, what was a healthy person or what was a mentally well person and then now, what we consider. 

[00:10:03]Richard Grinker: Yeah, well, I spend a lot of time talking about capitalism, but as you say, it's not in a dry way, it's not dry history. 

[00:10:09]Danielle Sullivan: Oh, no, it's fantastic. 

The Origins of Mental Illness

[00:10:11]Richard Grinker: Yeah, but here's the thing, it's not that capitalism created mental illnesses, or even mental illness terms, is that capitalism created the conditions within which scientists proposed that there were different kinds of conditions and that you could define something as distinctly mental or distinctly biological.

And so, how did that happen? The ideal person in the past had been somebody who was in Europe, at least, living for God, and doing what he or she could on his family farm, or whatever they were doing. And with capitalism, we get a transition, where now the ideal person is not tied to their family or to religion. The ideal person is the maximizer, the producer, the autonomous, independent individual.

And so, kinship ties become loosened, urbanization begins, and all of a sudden family members are bringing unproductive members of their family to asylums. And the mandate for the first asylums in the early industrial revolution in France and England was not to take care of people who were sick, it was to house the idle, and to try and do something with people who were not contributing to the economy. 

And so, they lumped together criminals, paupers, people with physical disabilities, with mental illnesses. And all of a sudden, scientists had a large group of people together. And for the first time, they could look at them as a large group and say, “Hmm, there are different types here, we could classify these into different groups”. And that from the asylums is where we get the invention of prisons, there were no prisons before the asylums, because they said, let's move the criminals someplace else.

That's where we get the invention of a distinctly mental illness. It's even by the way, quite counter-intuitively, where we get the idea that there should be fixed sexes of male and female. I'm trying to say that, it's not that mental illnesses didn't exist before, people suffered depressions, and they'd suffered anxiety, but they weren't labeled, identified, stigmatized for a distinctly mental illness. They may have been stigmatized or marginalized for whatever they had, meaning they're not useful, or they're a problem, or they're violent, or whatever it might have been, but not because they had something called a mental illness. That gets invented.

[00:13:09]Danielle Sullivan: Pretty late in human history. 

[00:13:11]Richard Grinker: Yeah, I mean, all kinds of things get invented pretty late. I’m sure that there were men who had sex with men, and women who had sex with women, as long as anybody has a historical record, but it only became something called homosexuality, a kind of person, a type of human being, with some kind of inner personality or disposition that led to a certain sexual orientation in the late 1800s.

In fact, the word homosexuality doesn't even enter the Oxford English Dictionary till 1976. And its first usage in the psychological literature is in 1892. So, we really don't see some of these things until very, very late, where these terms of pathology come to be applied to a person as a whole, as if it completely constitutes them. 

[00:14:05]Danielle Sullivan: Yeah. So, your self-identity is, as the homosexual person, as the disabled person, and not much else, like, that's who you are. 

Richard Grinker: And if you're disabled, you're disabled because you are not fitting into…

Danielle Sullivan: You are not producing for capitalism. 

[00:14:22]Richard Grinker: … ideals of capitalism. And so, essentially, the ideology that we have today in the United States, where we just say, the autonomous, the producer, the independent person, in 1821, you better leave the house, stake your claim out on the world as this completely independent person, which we know that's an illusion, it's just an ideology, but that is something is born in the industrial revolution.


How Stigma Functions in Society

Richard Grinker: So, when I look at all of these campaigns, like, Stopping Stigma campaigns, they tend to focus on education and awareness, as if somehow the stigma of mental illness is produced by ignorance. It's not, it's not ignorance, and it's not lack of education or lack of awareness.

Stigma is something that is deeply rooted in the history of how we value certain kinds of human beings. The concept of abnormality, and normality, are both concepts that really are about what we value in a human being. And part of the goal of this book is to say that the way in which the Neurodiversity Movement, the way in which other kinds of movements are reevaluating what is a meaningful life, and what is a valuable life, is the thing that is changing the stigma. Not, somebody reads a book on autism. It has to do with what we now see as valuable.

The story that I tell in the book that still gives me goosebumps because I was there is when my daughter was graduating from high school, and she was asked to give a speech, and nobody with a disability has ever given a speech. And there were 3000 people, Daughters of the American Revolution Constitution Hall, across the way from the White House. And most of these kids didn't know her because she'd been in self-contained special ed classes. 

And she started to give her speech and she has a very unusual rhythm, kind of a singsong pattern. And she's also very formal too, in the way she talks. And you could hear whispering, and some snickering in the audience, just people murmuring, murmurs of the sounds of stigma. And then she gets to a sentence, where she says, “People with autism like me,” and then you could just feel the room get quiet.

And it wasn't that somehow she's now being stigmatized, quite the opposite. It was that people now had a framework for understanding her so that what had been seen as enigmatic or weird even, now made sense, because by that time, when she graduated, autism was something all these kids knew about. And it made sense to them and they were like, “Oh, now I get it, why she talks that way, she’s got autism, fine” and then they gave her a standing ovation.

[00:17:50]Danielle Sullivan: So, the framing has changed over time.

[00:17:55]Richard Grinker: How we define something changes over time, even the word autism if somebody had said they were autistic back in 1970, the audience would probably say, well get off the stage or why are they asking a person with autism to speak? Or they would say, well, they can speak therefore they're not autistic. There would have been something like that. 

[00:18:14]Danielle Sullivan: Yeah, I was thinking about how we were talking about how, with the formation of capitalism, you start to see these identities as being applied to the whole person, like we were just talking about a couple of minutes ago, and your story for me is a really good example of how that is still functioning in the current day that we're still seeing… now that we have this identification of autism for this woman, like, “Okay, we get it.” But outside of that, the stigma seems to be functioning within this unknowing space?

[00:18:46]Richard Grinker: Yeah. And I think also, it's not to say that there aren't still many conditions that are highly stigmatized, two of the most highly stigmatized psychiatric disorders are substance abuse and schizophrenia. Why? So, you might say, “Oh, well, it's because the person with substance abuse, maybe they're criminals, or the person with schizophrenia might be frightening, or whatever.” But I really think that it has to do with the fact that those particular conditions threaten those capitalist and industrial ideas of autonomy, self-control, and that's what characterizes the fear of those. And I'm very strongly opposed to attempts to eradicate stigma, by reframing everything in biological terms.


How Do We Reduce Stigma?

[00:19:37]Danielle Sullivan: I wanted to talk to you about that because I know towards the end of your book, you discuss that having a mental illness and framing it as a neurobiological, is coming from something neurobiological creates further stigma, as opposed to listing it. And as a neurodiversity advocate, a lot of us do lean on that "our brains are different” sort of talking point, like ADHD brains are different, autistic brains are different than neurotypical brains.

But I did hear what you're saying that you want to move away from that sort of neurobiological cause. So, we know that there are environmental causes, there are other reasons for our traits that define us as autistic. But what are different approaches that neurodiversity advocates could take that actually do work to lessen stigma, that aren't this theoretical, biological, “our brains are different” kind of approach. Do you have any ideas for that?

[00:20:28]Richard Grinker: Well, the only thing that has really worked to lessen the stigma of any developmental disability, disability, mental illness, is when society takes some of the blame.

When we decide that, it's the environment, that the person lives in, that is partly responsible for the degree to which they are able to do the things they want to do in life, the degree to which they're suffering. The simplest example of this is the person who's in a wheelchair and uses a wheelchair. And that person is disabled only, when there are no ramps or elevators when the environment makes it so that they cannot do what they want to do. Otherwise, we could say that they don't have a disability at all, right?

And similarly, when somebody has autism, if we don't value what they do, and how they do it, and the quirks and unusual and distinct aspects of their personalities, just as we value the different personalities of everybody else, then we're going to keep stigmatizing them.

But the person with autism today, in this environment of 2021, is able to achieve so much more than they could in 1970, or 1960. And that's not because they have a different condition, it's because we have a different society. We have a society that allows remote work, we have a society that has removed the categorical idea that you have a disease, you don't have a disease, and we're looking at things on a spectrum that is now valuing certain kinds of knowledge that people with, “autistic brains” may be good at.

The environment changes, even if potentially, the condition itself doesn't. And that's a little simplistic since we know that experience itself changes the structure of the brain, we know that, we know that social supports make a big difference. Now let's just take autism during the pandemic. There are people with autism, who during the pandemic have actually blossomed. They become more social... 

[00:23:01]Danielle Sullivan: I know many of them, yeah. 

[00:23:02]Richard Grinker: Okay. They've made new friends, particularly if they're in high school, and they're acutely aware of their differences, they may have much less social anxiety, because they're not having to face that difficulty in school and they don't come home exhausted, and they can explore other interests, like art or music or whatever it might be. But at the same time, there are a lot of people whose symptoms are changing. They don't have a cohesive family, they needed the structure that they've lost, they've regressed and lost certain kinds of skills that they worked really hard to develop. Their parents and/or caregivers, and, they don't know how to interact with each other in the way that they used to. 

And there are children now some of them who are going into residential placements because of the stresses and the decline of their skills that they had developed previously, they've regressed. And so, the environment makes a huge difference, you just can't underestimate that. And I think the pandemic has shown that, where some people have gone one way and other people have gone another. I think also, the research that is happening in the scientific arena, is really starting to show us that both the neurobiological research hasn't translated yet into anything to help people. So, you said ADHD brains are different, yeah, but that knowledge doesn't mean there's better special education. 

[00:024:50]Danielle Sullivan: No, it does not. 

[00:24:51]Richard Grinker: We know that people with schizophrenia have different brain circuitry, but that doesn't do anything to the history of discrimination or poverty or downward drift in schizophrenia. So, they're recognizing that there hasn't been that kind of translation. But they're also recognizing that it just seems folly to make these reductions. Take epigenetics, we know that somebody who has experienced trauma in their life can have alterations, not in their genes, but in the regulators and the enhancers that are adjacent to genes, that can be passed on to progeny. Lamarck wasn't entirely wrong, it seems, you can pass things on. And so people who have experienced great trauma, whether it's famine or genocide, or growing up under very adverse childhood circumstances, there can be intergenerational trauma. And in those cases, it then makes absolutely no sense to call something a biological condition or a mental condition. Because it's neither, it's just so much more complex than that. Sorry to be so long-winded.

[00:26:04]Danielle Sullivan: No, totally fine.

[00:26:05]Richard Grinker: You asked a complicated question. 

[00:26:08]Danielle Sullivan: I know, they're all complicated. One of the things I really liked about your book was that everything rested on everything else. I really enjoyed your history, I think it was a comparison between the WW1 vets and their reactions to traumatic experiences versus the WW2. 

[00:26:25]Richard Grinker: The wars, yeah. 

[00:26:26]Danielle Sullivan: Because you did sort of draw in to this idea that folks in WW1, framed their life in a certain way and so when they experienced significant trauma in the war, their reactions were these set of symptoms, but then by WW2, we had a totally different understanding. And the men who were injured or had great trauma in WW2 had completely different post-traumatic stress, “symptoms.” And that was just so interesting as an illustration of how the physical wellness of the body and the brain-based mental illness are so intertwined and are so fused together. 

[00:27:04]Richard Grinker: Well, that's just another example of how difficult it is to separate ourselves from the environments in which we live, right? If you live in a society that you know, legitimates suffering that is physical but stigmatizes suffering that is mental, you will experience mental suffering as if it is physical.

[00:27:24]Danielle Sullivan: It was so interesting, yeah.

[00:27:27]Richard Grinker: You'll have stomach aches and headaches and numbness and even partial paralysis, not because you really have a fundamentally different condition, because it's what Freud called the sense of symptoms. When we're sick, we have the symptoms that make sense to us, and to the people to whom we're trying to communicate. And so, by WW2, psychoanalysis is taking hold, and people are becoming much more comfortable talking about mood and anxiety and neurosis and things like that. And so, you see them start to experience suffering that way, to psychological terms.

But one of the reasons I focused on the wars, is that I was trying, as I said earlier, to figure out what are the factors that exacerbate or minimize stigma. And during and right after every war, I found all these articles in which people said, “The stigma of mental illness has disappeared because we've seen in WW1, that even the best and the brightest, when exposed to trauma will suffer.”

And then it changes and stigmatized again and then another war comes along and in 1945 or in 1946, the New York Times said of my grandfather, that he had eradicated the stigma of mental illness. And he made the claim, “Yes, these men were not abnormal that I treated through psychiatric therapies. They were normal people in abnormal circumstances.”

And I have to wonder whether this pandemic is going to do something similar. Can anybody say they haven't been significantly emotionally affected over the past year? That would be pretty tough for anybody to say. And what wars and this pandemic have in common is that everybody is subject to these stressors. And so, if everybody is subjected to those stressors, then certain forms of suffering become reasonable, acceptable, and even expectable.

 

Want to Hear More?

  • If you'd like access to the Patrons-only aftershow, plus many other perks, please consider pledging $1, $5, or $10 a month to support this show. Find out more and pledge today at patreon.com/neurodiverging.

Leave a Comment

s2Member®