Why we should rethink what mental health means (w/ Sandy Allen) (Transcript)

[00:00:00] Chris Duffy:
You are listening to How to Be a Better Human. I'm your host, Chris Duffy.

Jumping into cold water, talking to a friend (especially if they make me laugh), getting enough sleep, and exercising even the tiniest bit—those are a few of the things that help me when I'm struggling mentally, and I've been thinking about that list more explicitly this week because our guest, Sandy Allen, is a writer who covers mental health and madness, but Sandy also sends out a newsletter called What's Helping Today, and I think that framing—what is helping today—is a really different way of thinking about how we take care of our minds. Because often there's so much talk about self-care or mental health, but very few details about what that actually looks like. What actions should you take?

And there's an even greater need for specific concrete actions when things get more serious. That's something that Sandy looked at in his first book, A Kind of Mirraculas Paradise: A True Story About Schizophrenia. The book is half a memoir by Sandy's uncle and half Sandy putting his uncle's words into context, both in terms of their family and in terms of society at large. Here's a clip of Sandy talking about that book.

[00:01:08] Sandy Allen:
So I've tried to, in the first book and in my continued work, I guess just continued to not just like share a story about a quote-unquote “crazy person”, but do so in a way that actually engages with the science and the history and asks us all, like, “Hey, what if we really tune into the present of this issue?”

A lot of us, I think, wind up interacting with something like the mental healthcare system when we are already in crisis or in need, or we're already seeing a loved one struggle, or we don't have time to be thoughtful if we are already in an emergency. And so I think a lot of my work is about adding that situational awareness ahead of time.

[00:01:48] Chris Duffy:
Over the course of this episode, we're gonna talk a lot with Sandy about what it means to take care of your brain and of your mind. And we're also gonna talk about how we can talk more openly about the extremes of mental health and whether there might be new ways for us to think about them. How can we not see some people as scary and instead as part of a spectrum of human experience that we can all see ourselves in and learn from? But first, we're gonna take a short break. Don't go anywhere.

[BREAK]

[00:02:25] Chris Duffy:
Today we're talking with the journalist Sandy Allen.

[00:02:28] Sandy Allen:
I'm Sandy Ernest Allen. I'm an author. I wrote a book called A Kind of Mirraculas Paradise.

[00:02:35] Chris Duffy:
For people who aren't familiar with your work, how did you first get interested in writing about mental health?

[00:02:39] Sandy Allen:
I got tricked into writing about mental health for my whole career by my late uncle who is so, he's now a ghost. He fooled me into getting so interested in questions like how we could improve upon the mental healthcare system that we have, that I've wound up spending like, I don't know, going on a dozen, 15-something years like that, like investigating that question as earnestly as I could.

[00:03:08] Chris Duffy:
In A Kind of Mirraculas Paradise, it's kind of half the memoir of your uncle who receives this diagnosis of schizophrenia and him telling the story of his own life, and then half of it is your attempt to put that story in context, both personally in terms of your experience of his life and, and your family's experience of his life, but then also societally, like the way that we treat people who get these diagnoses and the way that we think about them and, and in many ways fear them.

[00:03:32] Sandy Allen:
It's a book that's unconventional in the sense that he started it. He was someone who lived very alone in the desert. He had lived, it turned out a very exciting life full of adventure that as a relative of his, I knew nothing about. I only knew him as this obscure kind of like scary figure maybe in the wings, you know, that you don't really wanna look into like that crazy person if everyone sort of told you to look away.

But he was someone who wrote down his entire life story on a typewriter and mailed it to me, and I had just started a creative writing degree. I mean, this was a while ago now, but I was like, “Huh, I don't wanna deal with this at all. This seems like a bad idea. This seems like some family stuff that I don't wanna get into.”

And when I read his story, what I instead found was, “Wow. This is someone who I never really took seriously and never really considered his humanity, let alone what he had to say about, like, life or the world or anything else.” And so it began a process of me trying to figure out how could I convey this to other people because his story was really phenomenal. And I found there was such a gap between that vague impression of a monster that I think we can have when we're thinking about something like the schizophrenic versus the person that I found him to be on the page, which was, like, a really sensitive and compassionate and interesting and complicated and kind of funky person.

And I also found that he had started to change my life in the course of me reading his story closely. And I eventually had begun writing my rendition of it, which I sort of refer to as a cover version. And as you say, I, when I then had a publisher for the book, I was really challenged to not just set this story down but bring in this wider context of how do we treat people who we decide are insane, and is that okay? And, and could we be doing better? You know, and, and the issue of police violence and mental health. Like, how do we actually as a society right now respond to something like somebody is in a severe crisis? And does that response, like, make any sense?

[00:05:26] Chris Duffy:
What do you think dominant culture gets most wrong about sanity and madness?

[00:05:30] Sandy Allen:
I would say that our dominant culture is insane. And I would say that most mad people are probably more tuned into reality than we would care to admit. And I mean that in part because what does SANE society include?

It includes war, it includes, you know, weaponized violence. It includes a lot of brutality. It includes a lot of people making profit off of others. It includes inequality. It includes all this stuff that I think what's funny about my career is I've ended up spending a lot of time really taking crazy people very seriously.

I have come into close contact with, like, the Mad Pride movement as a journalist. Like I'm a journalist who will show up at a Hearing Voices World Congress, but to me, this is the future, and part of it is these are people who are weird and different and they therefore compassionate, and they're building a different kind of reality.

And I became a bit entranced by all that, I think initially through Uncle Bob, but then realizing, like, “Whoa, there's a whole, there's a whole liberation movement already here.” You know? There are activists; there’s like a lot happening. The mainstream coverage of something like mental health—your nightly news is overselling how scary crazy people are. It’s overselling how criminal crazy people are.

It's a little scary how much we get away with just repeating stuff that is so not even science at all, but we all think it's true still because we hear it and we think, “Oh, well that must be true ‘cause I've heard it so many times,” but what we have as a failure of leadership. We have a failure of medical leadership. We have a failure of regulatory leadership.

But I do know that my job is to try to, like, listen to everybody and then try to ingest all that and try to give it to the public in a way that will hopefully, like, talk to people for real about all this.

[00:07:19] Chris Duffy:
It seems like one of the things that I think is really interesting and important about your work is that there's been a really necessary and, and I think really positive push in the last couple years around de-stigmatizing mental health care.

But a lot of that de-stigmatizing has come around things like talking about, you know, some anxiety or seeing a therapist or, and I'm not trying to diminish the, the pain and the seriousness of these. But the less severe side of mental illness is what has gotten the most de-stigmatized, whereas the part that is most disruptive to a life, right? The part where it's like a real crisis, that still has quite a lot of stigma around it, right?

If someone is, is struggling or has a family member who's struggling with, you know, like you said, hearing voices or, or struggling to—

[00:08:08] Sandy Allen:
Right.

[00:08:08] Chris Duffy:
You know, understand what's happening around them. That is a very stigmatized thing still, in my opinion at least.

[00:08:13] Sandy Allen:
I think that's true. From my point of view, I wonder, “What are we destigmatizing?” And you're kind of getting at this, like what side of this is suddenly promoted by this vision? Or is a word like “stigma” so beautifully vague that you know, you could, like, believe in anything and say, “I wanna destigmatize mental health.” That’s a meaningless sentence.

[00:08:35] Chris Duffy:
Yeah.

[00:08:35] Sandy Allen:
Doesn’t mean anything to me, right? So I hear it more as it's become a platitude, especially amongst, you know, a certain kind of person, especially in the post-Free Britney moment. And yeah, I don't know what we're talking about. I don't think people who are suddenly weighing in about something like Britney knew anything about the mental healthcare system.

I don't blame folks because I don't think people have been set up to know. You know, like what's the history actually show us? Like, I also hear your point, which is we have these other kinds of what we might think of as more extreme. You know, if you're thinking about schizophrenia-related stuff, psychosis, whatever, madness. Right?

That stuff remains, as you're observing, very stigmatized. There's kind of two population bases that are identified. There's sort of the, what they call like the “walking well”, and then there's like everybody else who's really crazy. And I think that those two populations have always been treated very differently by institutional mental health care.

In terms of the latter, like, what does mental healthcare look for as somebody who's got a very severe diagnosis in America today? It is not a pretty picture, right? Like, we are not giving people an opportunity to live, like, lives that re necessarily, like, full and promising because we have a very negative cast on somebody who's got a diagnosis like that.

We've got a medical system that looks at them very pessimistically. We don't have a society that invents, like invests in the kinds of interventions, or even just remembers the humanity of people. Like, because I am someone who's gotten to fly overseas and see how other countries work or have, I've read books, and I know that there are other ways we can even regard such people than the way that we do right now. It makes our system to me, the one that we have in America especially, just look very cruel. ‘Cause I think what it assumes of people is if you've had something bad happen to you or if it looks really scary to others, you are doomed. There's nothing for you.

And this is not to say that everybody who's had that experience is doomed. I hope that's extremely clear. I'm speaking from the point of view in broad generalities of how pessimistic a diagnosis is something like schizophrenia in America today. It's a hard situation in which people are often handed a very paternalistic answer that's not necessarily rooted in science, and they're not necessarily offered interventions that would be more helpful and would be more compassionate, and we don't necessarily have funding for such things in a country like this.

And then meanwhile, we have the reality of our psychiatric system, which in so many cases is our criminal justice system. And it's a paradigm that's rooted around control. The more marginalized a person already is, the worse they're gonna fare in the system itself.

And so there is also just this fact that we have a very punishing response, which I think is so backwards, right? Because ultimately, if I'm seeking mental healthcare for myself, I want something that is the opposite of being tossed in a jail cell or being injected with, I don't know what this chemical is and it changes my whole perception of reality or whatever else we might be kind of forcing upon people who are already in a crisis.

And just to say one more thing, if it's okay. So we have this conception that if you hear voices, you are schizophrenic. If you are schizophrenic, you are very disabled, or whatever. This isn't true at all. This is not true at all. But, the stigma against something like schizophrenia or voice hearing or whatever is so profoundly high that the population of people who are what we would think of as like, closeted voice hearers is high.

Something like the Hearing Voices Network, which I've spent years reporting on and studying in general, like, offers a different way where people are allowed to just bring that to the room and to be themselves and to have that as an identity. And so, I've been really inspired by the people I've gotten to know through my reporting who are activists involved in creating a new mental healthcare system from the point of view of being out and proud voice hearers.

You know, having that identity, which was once so marginalized, instead be worn as a sort of badge of honor and the premise from which they can offer care to everybody.

[00:12:43] Chris Duffy:
Okay, we're gonna take a quick break, but we'll be right back with more from Sandy Allen.

[BREAK]

[00:12:54] Chris Duffy:
And we are back. We're talking with author Sandy Allen. So, Sandy, you've already kind of referenced this, but people who have a mental health diagnosis are actually much more likely to be victims of violence than perpetrators. But there are almost no mental diagnoses that there's a test that you take, and it's positive or negative, right? It's not like, “Oh, do you have strep throat? Let's bring it in the culture.” And I think we often view diagnoses as though they are all like “it's a yes or a no.”

[00:13:22] Sandy Allen:
Yeah.

[00:13:22] Chris Duffy:
And in fact, that, that's not, they're up for interpretation and a lot of what you have written about is what changes if we interpret these symptoms and experiences differently.

[00:13:31] Sandy Allen:
I think that's a fantastic point. The first bit about not only do we overemphasize the criminality of people who are diagnosed with severe mental illnesses, but we have this, like, I think tendency to assume that something like a psychiatric diagnosis is as real as a COVID diagnosis, and there's this—I would say in plain sight, open secret, whatever we wanna call it, that that's just not the medical reality. It's unknown.

And so where does that leave us all, right? But like there is a tendency to move away toward what we might think of as a medicalized mental healthcare system and toward maybe what we might think of as a human rights point of view on this stuff.

And so what I'm talking about is neurodiversity. There's a lot of examples here, but if we think of a term like schizophrenic versus a term like “voice-hearer”. Now, I might be describing the same thing. So, one of those things has a slightly more negative cast to it, right? And so a lot of what this is about is about who has the power to define?

Systemically, is someone being told by the system, “Here's the negative word for what you are,” or should we create a system in which individual people are allowed to, for example, own and maybe even be very open about those ways that they're different inside? One of the things about voice-hearing, vision, seeing, psychoses, there's a lot of scientific murk in this area, right? There’s a lot of like, “Why does this happen to somebody?” And there's been a lot of decades of science looking at that. And in general, there's not a lot that is stable when you really, really dig down, except trauma. Trauma is one of the absolute best predictors for something like, will a person have an immensely challenging internal life, including the kind that might result in, yeah, crazy stuff, right?

And so that is the kind of thing where, again, I've been really inspired by the Hearing Voices movement because when you get in those rooms, folks aren't sitting there talking about their voices. They’re talking about their stressful lives. They're talking about the hard stuff that happened to them, especially often as young children, and especially stuff like sexual violence.

And so I think to the folks who are voice hearers, who have such challenging inner lives and who have nonetheless figured out how to do it. Like, if you meet somebody who's got a dozen voices in their head and I have, and you watch what it is for them to like live life and carry on a conversation, let alone lead a civil rights movement, you know, that's inspirational to me.

It's so scary, right, to imagine, “Oh, what if I were crazy?” or, “Oh, what if I lost everything?” But for me, I feel very honored that I've gotten to know people who show me, like, “No, it's okay.” You know, it's okay if you're fallible it. It's okay if your life falls apart or whatever that would mean for you because you can survive it.

It really, really matters if you believe in that yourself. And I think adding the “craziest”, you know, and I say that with very big air quotes all around it, but adding those people into our full vantage of this, I think will help us see, “Oh, that's me. That's us.” Like there's no big distinction between you and me and a voice hearer, right? And the more we can center that, I think the better we will do.

[00:17:03] Chris Duffy:
I think that one of the things that really stands out to me about your journalism and your work is how you reject a, a very common framework, which is that like, “This is something that happens to those people over there.” as opposed to “We are all people and we all are experiencing pieces of this.”

But you, I think, have also spent a lot of attention and time thinking about the less dramatic, right, the daily practices that we can all do to take care of our mind. Something that you put out that I love is a newsletter in writing that's called What's Helping Today. So, um, when you think about taking care of your own mind, what is helping you today?

[00:17:40] Sandy Allen:
What's helping today is I played piano and sang before we started this recording, which definitely helped me burn off some energy. Sang a little Under Pressure, Freddy, and Bowie. Yeah. “What's helping today?” is this phrase I've tended to say for a few years, and I made it the name of this newsletter now, and it's a concept that I like bringing to people's attention—what's genuinely been helpful to you today?

And so I'll have days where I’m, let's say, so overwhelmed by a panic attack, I can't do anything. And so I think on a day like that, or a day where I've got debilitating back pain that's so severe, I can't get off the couch, a practice like bringing my mind to “What's positive, buddy?” You know, like really going for it and maybe going, “Huh? Maybe a glass of water would help.”

And sometimes a thought like that, that's huge. And I think that often the, the tendency is to think in terms of these big solutions, magic bullet, pills. Like there's a sense of like, “We gotta knock it out.” War, right? And I don't think that's often how psychosocial spiritual, emotional wellbeing is actually had. I think it's a sort of ongoing, ever-evolving, you gotta deal with the crap of the day that washed in on your shore. You gotta deal with what whatever is inside you that you've never dealt with, or whatever.

And so yeah, what's helping today might be psych meds. What's helping today might be therapy. What's helping today might be some of these more traditional interventions. Right now, we have what can be a very narrow vision, and one that I think can deprive us even of the, I don't know if it's, if it's too much to say it, but the divinity of those small things, right? Like, when I am really looking into my dog's eyes, to use that example, that’s it. I don't know what's better in this world, right? And so I like creating a sort of more open, more holistic, perhaps vision of quote-unquote mental wellbeing that just honors that daily tiny stuff.

[00:19:48] Chris Duffy:
To solve it all, to have the answer that's gonna get us from zero to a hundred. That has, at least for me, been very unsatisfying and not productive. There's never been the light switch. I can never find the light switch that switches from dark to light. However, just getting through an hour—

[00:20:07] Sandy Allen:
Yes.

[00:20:07] Chris Duffy:
Five minutes. It has always then gotten better. When you just get through over time it does, and it's hard to believe that in the moment.

[00:20:14] Sandy Allen:
Totally. And so it's like that thing where it's like, “No, you gotta wake up every day and do your job and just be as strong as ever,” that is ridiculous. It does not take into account the realities of a human life. You know, we view madness as this error in the sane system. That's not it. Madness is an aspect of human life, which is a totally crazy endeavor. You know, there's an extent to which if we seek to delete madness, we're just gonna delete people, right?

What we need to be doing is recognizing that we are all potentially mad, that that is part of life, that that could happen to you. It could happen to me, and I think that especially people who've lived life a while really understand this already. For the most part, what I've found spending time in close proximity to people who've lived through even really what we might think of severe psychiatric challenges are often endowed with tons of wisdom on how to live life, especially the hard stuff.

[00:21:20] Chris Duffy:
You've referenced a few times that you've seen places and cultures that do have more, that have more compassionate or even more effective ways of, of dealing with these issues.

[00:21:30] Sandy Allen:
Yeah. Both.

[00:21:30] Chris Duffy:
Can you give us some of the places that you look at and think of as like visions—

[00:21:34] Sandy Allen:
Yeah.

[00:21:34] Chris Duffy:
—of, of this being done well?

[00:21:36] Sandy Allen:
Totally. And I don't think anyone, nowhere in the world is this being done, quote-unquote, “fully right” or whatever. I do think humanity is working this one out still, and in part, a lot of us are contending with the what we have, right?

But yes, I have gotten to do stuff like travel overseas to the Netherlands to spend a lot of time at what, what are called care farms. And so a care farm is a regular farm, but what they're farming in part is care. And so whether that's people with disabilities or elders with dementia, people with psych diagnoses, whatever, grief, burnout, all sorts of different challenges, population groups, even school children.

But all over Western Europe, Eastern Asia, you've got a tendency now to have farming settings that are becoming alternatives basically to psychiatric and other healthcare settings. So someone might have a lot of challenges in their life, but they can grow vegetables, or they can chop potatoes for lunch, or they can hold a kitten and have a nice day. And maybe that is an alternative to having sat around the nursing home facility for the whole day. Like, for a lot of people who've got disabilities and severe challenges, life can become very small and something like care farming instead invites people who've been maybe marginalized by diagnosis or disability into a new context and says, “Hey, what are you capable of?”

And so I have, like, I have hung out in the woods in Northern Montana with, like, folks who've got traumatic brain injuries and developmental disabilities who are chopping up firewood with axes and, and, and it is like the most amazing thing I've ever seen in my life.

And it's healthcare. And it's one of those things where it's not happening a lot in this country yet, but it's happening. And the reason it's happening is it's a good idea. You often have farmers who are then able to supplement income and you’ve got individuals who, yeah, otherwise might be sitting around doing something relatively unstimulating who suddenly have access to, whether it's growing vegetables or raising livestock or being outdoors or whatever it is.

[00:23:47] Chris Duffy:
You know, you were working at a very high-paced, prestigious job in journalism, in digital journalism in New York City, and you decided to move out to a rural area and really rethink your life. And I think that's something that a lot of people kind of fantasize about sometimes, but you, you actually did it.

[00:24:03] Sandy Allen:
There are many reasons why I moved out here to the rural upstate New York area where, where I do in, I guess, yeah, six years ago. But a big reason was that I was researching mental wellbeing and I kept seeing it. I kept seeing it, like, “Hey, being around green stuff, hey, being in nature, hey, being around like birds and stars in the moon and all that, that's really good for you, human.”

I think at some point investigating mental health, I had to decide for me, as a super anxious person with trauma history and all of it, did I wanna be surrounded by, like, the noise and stimulation of the city at the end of the day? I don't think I did, and it took me a long time to just be like, “Right. I don't actually like that as much as I like something like the total silence of the country.”

Which I know is not everybody's speed, right? But for me, I barely remember what reality was before I moved out here, in part because I think I am so much better tuned to this kind of life, but I had made that choice in part because I think as you look at mental health, so many of the authority figures are not living what looks like a mentally healthy life. How do you make, you know, mental healthcare solutions for all if you're really upset and sad and you know, all you do is work and it's kind of angry all the time? You know, that's a really hard job taking on tons of other people's pain. So where does all that go? And so I've had to, like a lot of us, kind of continue my quest and find something that might make sense for myself.

[00:25:43] Chris Duffy:
So thinking about folks who are listening and are trying to think about how to take care of their own minds and their own selves and change their own thinking and make it healthier for them, what are the three biggest things you think that people should do to take care of themselves mentally?

[00:25:59] Sandy Allen:
I do think along the “what's helping today” line, it's important for us to focus in on like, what are those things that give us a sort of like embodied joy? And to actually identify when you've run into that in, in your life.

Because I think sometimes we can live very unconsciously and not necessarily notice, like, “Oh, this activity is one that I like. I feel four years old and so happy when I do,” right? Like, we're not necessarily consciously tracking something like that. So that would be my first one.
So related to that, if you've got self-care practices already, I would encourage folks to think about what is the spirit in which you do those practices, because it's one thing to do yoga ‘cause you HAVE to, but if you're doing it because it genuinely feels good and you genuinely love it, then it's probably a good self-care practice for you. And so I would just encourage people to really tune in, into like, is this for me? Like, is this actually my thing or did I feel social pressure to do this? Because if you hate baths and you're forcing yourself to take baths because you think that that's for mental health, no, that's not… It, it has to come from your own little spirit inside.

And so the third, and this is related to the first two. Try to get in touch with yourself. Maybe you are already someone who sits in silence, you know, as a practice, and maybe you are someone who is in a therapy of some kind and therefore has that space to kind of like excavate or whatever.

A lot of us don't do that stuff. A lot of us live very unconscious lives. A lot of us don't actually wanna do something like meditate because it's really unpleasant ‘cause, like, your thoughts are bad and you don't wanna go there, right? Or whatever it is. But like, I do think it's important to try to find a practice that will help you tune in to whatever's actually going on inside you.

It's very hard, I think, to know how to live our lives if we're asleep to, yeah, what do we actually want? Who are we actually inside? I think your life will only be better if you honor whatever it is that's real about you, as opposed to pretending for everybody else's sake.

[00:28:22] Chris Duffy:
I, I know that you have thought about this a lot specifically through the lens of, of being a trans person and thinking about how these daily practices relate to your identity and to being true to who you actually are.

[00:28:34] Sandy Allen:
Yeah, I, I, for sure. I, I can't imagine my life if I hadn't done something like start to try to honor my interior life more, in part because I am trans and because when I did slow down enough and moved to the country and quit alcohol and other changes like that that I think were really important for me to, like, listen to what was going on inside more, what I found was like, yeah, I have been living a life that was handed to me that had really only been difficult to try to pull off.

And so once I instead became honest about who I am to everybody and started to take steps to actually, like, make that more manifest in reality for me, that journey has been absolutely intertwined with this journey to find better mental healthcare.

There is so much goodness I never knew about, and so now I live a more what feels like full and embodied, you know, existence and it's got joy that I never knew was possible. For me, being a trans person is like the greatest honor. I can't imagine anything better.

[00:29:51] Chris Duffy:
I love that. Well, Sandy Ernest Allen, it has been an absolute pleasure. Thank you so much for being on the show.

[00:29:56] Sandy Allen:
Thank you, Chris.

[00:30:01] Chris Duffy:
That is it for today's episode of How to Be a Better Human. Thank you so much to today's guest, Sandy Allen. His book is called A Kind of Mirraculas Paradise, and you can find more about him online at hellosandy.com. I'm your host, Chris Duffy, and you can find more from me, including my weekly newsletter and all sorts of other things I've made online at chrisduffycomedy.com.

How to Be a Better Human is brought to you on the TED side by Daniella Balarezo, Alejandra Salazar, Whitney Pennington Rodgers, and BanBan Cheng. They have all helped me today as they help me almost every day. This episode was fact-checked by Julia Dickerson and Matheus Salles who know that while everyone has their own interior life, we should also all be able to rely on the same set of facts to ground our reality.

On the PRX side, our show is put together by a team that would probably be amazing at running a farm together, since they're amazing at everything they do. Morgan Flannery, Noor Gill, Patrick Grant, and Jocelyn Gonzales.

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We will be back next week with even more How to Be a Better Human. Until then, thanks again.