January 22, 2025 • 54 mins
Margaret continues talking with Samantha McVey about the decades-long project in Northern Japan full of worker-cooperatives and new ways of living.
https://www.dinf.ne.jp/doc/english/resource/bethel/bethel_0805.html
Karen Nakamura, A Disability of the Soul
https://aeon.co/essays/japans-radical-alternative-to-psychiatric-diagnosis
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Episode Transcript
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Speaker 1 (00:01):
Cool Zone Media, Hello, and welcome to cool people who
did cool stuff. You're a weekly reminder. Then what Margaret
is it doesn't have a producer. She forgets to do
the credits, but not this time because I and Margaret
Hill Joy. That's one of the credits. Another credit is
Samantha McVeigh our our guest. I was gonna say host,
(00:22):
but I'm the host.
Speaker 2 (00:23):
Uh, you're the host. I'm definitely not leading this charge.
Speaker 1 (00:26):
You sure I can send you the script? You could
just read it to me?
Speaker 2 (00:29):
Oh my god, could you imagine fun? Could you imagine
what happens?
Speaker 1 (00:34):
Especially because my script is like, I mean, it makes sense,
but it's not like perfect anyway, whatever, it's not exactly
what I read.
Speaker 2 (00:41):
Mine is like plot points, and I was like, good luck.
Speaker 1 (00:45):
When I first started doing the show, I was like, oh,
I'm just gonna do plot points. And Sophie was like,
you're gonna write a script and I was like, I'm
gonna write a script and I'm so glad. But it's
a different it's a slightly different format. You know.
Speaker 2 (00:57):
I was gonna say you were just heavily researched, and
our heavily research, but not to this level. Right, like
we have a lot of like quotes and numbers and
statistics like that's what we have.
Speaker 1 (01:06):
I think totally the kind of thing you can do
in like several hours as you're getting ready for an episode.
Speaker 2 (01:12):
Yeah, yeah, I don't have to read a lot of books,
although I have.
Speaker 1 (01:16):
Well, thank you for helping me prove my point that
I will forget the credits. But I remember that was
just finish the credits, our producer. I mean, there's actually
literally nothing that says I have to This is like
the way I do it, and so then I feel
like I always have to do it the same way.
Our producer, Sophie Licktraman, who isn't here right now, and
so it's just.
Speaker 2 (01:35):
Us we miss you, I.
Speaker 1 (01:37):
Know, and our audio engineers Rory Hi, Rory Hi, Rory.
Our theme music was written for us by Unwoman. And
this is part two in a two parter. So don't worry.
You're halfway there or unfortunately you're halfway there. I guess
depends on how much it's sad, I know, but it's
a two parter about Bethel House, which is a group
(02:00):
of mostly schizophrenic folks in Japan who have fundamentally changed
a lot of understandings around how we can deal with
psychiatric care and it. If you want more background, you
can also listen to our Fountainhouse episodes, although that's thousands
of miles away. But we were just talking about how
Bethel House has built a perfect slacker worker owner culture
(02:24):
and one of their core principles, this is the one
that challenges me the most. One of their core principles
is meeting before eating. That is to say, everything is
a meeting. I don't think it's specifically trying to say
like you can't eat until you finish a meeting. I
think what they're saying is like meeting is even more
important than food. But I'm not one hundred percent certain,
(02:45):
even though I've read a couple different takes on this,
everything is a meeting at Bethel House. As an anarchist,
I am used to this. I also dread it, But
when it's stuff that actually matters to me with people
I care about, it's not so bad. Every morning they
have a meeting with whatever members show up. Right, if
(03:06):
you join the Battelhouse, you're not like forced to come
a certain forced to do anything. But if you show
up to the meeting, every person in the room, staff
and members both will go around and discuss how they're doing,
both physically and psychologically, and then how many hours they
feel like working that day.
Speaker 2 (03:27):
They set their own schedule.
Speaker 1 (03:28):
I like it, yeah, and then basically the person who
facilitates the worker, owner, business or whatever that day will
then be like, okay, well if you're working from twelve
thirty to one fifteen, then you know, and they like
do all the balancing to make it work right. This
takes a long ass time at this morning meeting talking
about how they feel and how long they want to work.
(03:50):
It also means that everyone's health is everyone's business. And
it also means you know who's really grouchy and wants
to be left alone that day? And that's really relatable.
Sometimes when I'm in meetings, I kind of start off
by being like, I'm grouchy, going to mostly stay off Mike.
As for those staff members, they have no lanyards, they
(04:12):
have no uniforms, there's nothing to distinguish them from members.
These are like the social workers and stuff who they
hire to to help them. After the check ins, people
from each business give detailed reports down to reading like
all the mail order orders that have come in the
mail and stuff. And the reason for that is that
this fairly rotating cast of people doing the work right,
(04:35):
and so you don't want to feel like, well, I
worked yesterday and if I don't work today, everything's going
to fall apart. And so there's like really detailed report backs.
For example, my friend while while he was there, they
had a radio station and they you know, ran radio broadcasts,
and he went and he asked and he was like, well,
(04:56):
what if no one wants to work at the radio
station today? And then the guy was like, well, and
then there is a radio station today, that's fine. If
no one feels like doing the work, then it probably
shouldn't get done. Eh.
Speaker 2 (05:08):
I was gonna ask that question. What happens when they
just wake up to say I don't want to do this
today and no one does whatever needed so they just like, yeah, okay,
not getting done today.
Speaker 1 (05:17):
Then it doesn't happen, huh, and they just deal with it.
Speaker 2 (05:20):
I like that attitude.
Speaker 1 (05:21):
And this is actually one of the things that differs
from the clubhouse model the fountainhouse model, which also has
kind of an emphasis on worker owned businesses and emphasis
on getting work done and what happens if like a
Fountainhouse member has a job outside of Fountainhouse, like they
have a job at like a regular business. Is that
if they can't work because of their you know, mental
(05:42):
health issues, then a staff member from Fountainhouse will go
and do the work, right, like one of the social
workers who's hired by them will like go. But with
with Bethel House, it's like, well, it just doesn't get done.
That's okay, not even as like a passive aggressive like, well,
I guess we don't have a radio station today.
Speaker 2 (06:00):
You know, Yeah, I guess you can't.
Speaker 1 (06:02):
We can't have that today. Oh well yeah, and whose
fault is that? And so that way, like the number
of businesses they have like kind of ebbs and flows, right,
so it's not even like seen as a failure that
they like used to have more and they have less
now or whatever. You know, Like businesses come and go
as people feel like doing them. It's so interesting, and
(06:22):
they run a bunch of successful businesses with this model.
Most of them are supplementing their income with social services
and things like disability payments and things. But yeah, they
run businesses interesting. And this doesn't mean they don't have worries.
(06:44):
They actually cultivate worry to some degree. Psychiatric hospitals are
designed to remove your ability to worry. This is a
way that it gets praised. So Bethel is designed to
make sure you can worry. Problems should be welcomed and solved,
not fear and run from. And when they have problems
(07:04):
socially at Bethel House, which they do constantly, right, these
are welcomed as well. There's a psychiatrist who works at
the hospital who also works with Bethel House's name is
doctor Kawa mura or at least he did. Again, a
lot of like the book that I'm referencing came out
in twenty thirteen, and most of the ethnographic work and
it would happen in two thousand and five. And you know,
but doctor Kawa Murha, a psychiatrist at the hospital said, quote,
(07:28):
it's overwhelming the richness of their self expression. They're very loud.
I think it's important that they are able to express
anger and get into fights with their peers. When you're
angry at someone, in reality, you want their love. So
being able to express your anger is extremely healthy. If
you aren't able to express anger, what happens is that
(07:48):
the anger turns into malice in contrast to anger, Malice
is the desire to destroy the other party and is pathological.
Speaker 2 (07:58):
That sounds very Buddhist.
Speaker 1 (08:00):
Yeah, probably. Yeah. Oh it's interesting, yeah, because it's like
such a like mm.
Speaker 2 (08:05):
Hmm, it's kind of that whole like balance, yeah, ideals
and like like if you're true like Buddhism and like
nothing this level. But but the fact is that it
has to have a way to have a resolution and
whether if you how you handle it, what that resolution
will be.
Speaker 1 (08:23):
Yeah, that's interesting, that's cool. I really yeah, like I
really like this idea. It really like through me when
it was like anger means that you want someone to love,
and I'm like, no, I'm angry at people all the time.
And then I'm like, I mean one is just words
being different things depending on the context in which we
use them, right, but clearly because there are like I've
been in social circles where we all start yelling at
(08:43):
each other and arguing and stuff, right, and often that
is around like I feel isolated and I'm not heard
because you don't care about me, and so now I'm angry,
you know. Also, as part of their meeting culture, besides
just being willing to argue is that they sing a
whole bunch of songs, including one called the Welcome to
Bethel Song, and I'm not going to sing it.
Speaker 2 (09:05):
Oh, come on, you're a musicians. Come on, I know what.
Speaker 1 (09:08):
It's not in my head at all. But I have
the lyrics, okay, and it These are some of them,
it's not all of them. Isn't schizophrenia terrible? With its hallucinations,
voices and delusions. You just can't stand not doing anything,
so you end up cutting yourself. Isn't insomnia terrible? Making
noise at all hours of the night, you keep your
family up, no one in the neighborhood slept all night.
(09:31):
Isn't mental illness terrible? It is our gift from God.
Even if we're different from normal people, we're all first
class sickos. I like that.
Speaker 2 (09:43):
Yeah, me too, first class Yeah.
Speaker 1 (09:47):
And you know they're describing that, the fact that they're like, well,
this is hard. I kind of wish this wasn't the
way I was, but like, it's all right, this is
who I am. I'm not trying to fix it. I'm
trying to live with it. Most of any given day
is meetings. There's the Friday afternoon meeting in which people
(10:08):
talk about the entire week. There's also social skills training meeting,
so it's like meeting is kind of being used flexibly here.
There's also like workshops and stuff. Right, yeah, so they
have a social skills training meeting and people can go
to this. Everything is optional, as I understand it, and
you can go and then talk about social situations coming
up and then like workshop them and be like how
(10:30):
should I handle this social situation? And you can ask
for help, you can get for feedback about what you've
already done. They roll play situations and then talk about
what they could have done better, and then like switch
and you're like, now you're going to be the guy
who's talking to you instead. You know. M many, but
not all of the members live in various group homes
that work is housing co ops. I don't know about
(10:52):
the ownership structure, but they're all equals living there as
far as I can tell. I read one really relatable
piece by a hardcore shutting who described how she liked
living in a group home because even when she ignored
everyone all the time, she still always ate because people
figured out how to feed each other. She was like,
I would have starved to death. I was living alone.
Now people make sure I eat and then I ignore them.
(11:13):
All Over the decades, Bethel House has expanded, but not wildly.
So there's about one hundred or one hundred and fifty
people currently involved in it, depending on which source I'm reading.
They've bought several properties as people leave the tiny dying town.
They bought an abandoned print shop and named it New
Bethel where the meetings are now or were again. I
(11:36):
don't know, I don't know what's happening today. They also
bought an old bookstore the owners fled in the middle
of the night to avoid creditors. That's like how much
of a dying town it is, you know? The downstairs
is a storefront called burra braza, which is derived from
a word for basically like window shopping or loitering, people
who drop by shops just to wander around, and so
(11:57):
they like even name it after like, eh, can you
buy some of you want? I don't know whatever, you know,
like worker owner members might start with seaweed packing in
order to practice socializing with just coworkers. Right, You're like,
I don't talk to anyone, No one understands me. And
then you're like, okay, well go pack Seaweed. They're like, okay,
(12:18):
I got kind of used to talking to the people there.
Now I might go to the store and deal with
strangers and then be like, Nope, tomorrow I'm back to
seaweed packing, or tomorrow I'm back to hanging out by
myself in bed, you know. And then upstairs of the
no longer bookstore of the everything store is Sunshine House,
which is a woman only group home of Bethel members,
(12:41):
and they have a group that I think is really
cool because it's called They have a weekly group called
Women Anonymous, which is modeled on Schizophrenics Anonymous, So it's
basically just being like, we're going to have our like
group therapy talk for just women, and they talk about
women's issues, like how to deal with the patriarchy within
Bethelhouse because it's not fucking perfect. And I even like
(13:06):
with that, I get annoyed because I mean a lot
of the work that has been done around this, like
a you know, a woman wrote the primary book on this, right,
but it's like mostly primarily naming you know, a male doctor,
a male minister, but other women are heavily involved in
even the initial shaping of the culture, and like, as
has happened so many times on episodes, I've done like
(13:28):
a little less likely to be the figures that are
focused on, and so I usually have far less information
about them. Right. One of the things that they've worked
hard to do is honor the voices that people deal with.
And this is again it's not like a hooray, we
have issues, but it's a way to say, like, you
know what, there's something interesting here too. People who hear
(13:49):
voices are honored, and they sell a bunch of merch
festooned with their visions, right, which I think is just
a cool way to do it.
Speaker 2 (13:58):
Technowledge it.
Speaker 1 (13:59):
Yeah. Yeah. Hallucinations are personified as Gensho sons honorable voices,
which is a way to separate them out from the
people who see them. Right. So it's like that wasn't
you that did that? That was a Genho son, And
their main brand icon is a Genho son presented as
a pac Man figure. And one of the things is
(14:21):
like running to eat that guy who's like sort of
the mascot, you know, right right, I love that. Yeah,
And these are contrasted with okiakusans, which are honorable visitors,
which are negative self thoughts, and these are seen as
coming from inside the person. Everyone gets okiakusans, but schizophrenics
are the ones who get genho sons. Is the way
(14:42):
that they present it, right, So the people who get
visions are sort of honored for that, but not in
a way where you're like, Oh, everything's totally real, don't worry, right,
you know hm. And they teach techniques about how to,
for example, get the positive voices in your head to
fight back against the negative voices in your head, because
everyone has voices in their head, including you, because you're
listening to a podcast, and some of those voices you're
(15:04):
about to hear aren't our voices, but instead other voices,
and it's up to you to determine whether you think
they're positive or negative influences on your brain space. Here's
your test, and we're back. And so all the while
(15:30):
people are not cured, they're learning that they can participate
in their own corner of society and interact with mainstream
society as kind of a block. Take Kiyoshi, one of
the founding members, the guy Who's chased by pac Man.
As a kid and young adult, Kiyoshi was hospitalized for
seizures and hallucinations on a number of occasions. It's actually
(15:51):
interesting because he's like, he's more or less called schizophrenic,
but as he's pointed out, he's like, that wasn't really
the right diagnosis for what he had had psychiatric problems,
you know, right, And while he was at Red Cross Hospital,
he started helping out of the church. This is before
Bethel House is the kind of the founding of Bethel House. Right,
He would like, go and chop firewood and shit, right,
(16:12):
And when he was discharged, he moved into the church
with a few folks and then kept helping out, including
he was one of these first people packing seaweed. And
this didn't cure him. He wasn't like, oh now I
can totally get a regular job. He was still troubled.
This is according to his own sort of autobiography that
he wrote about Its actually, okay, there's a tangent. It's
not in my script. There's this whole interesting thing where
it's presented as sort of a cultural difference that psychiatric
(16:35):
treatment and therapy is much less talk therapy and much
less about the past, and so Bethel House is like
not very focused on let's talk about what happened in
the past, except as a way to study the patterns
of how we can move forward. And now I don't
remember why that was related, but I remember finding it
really interesting.
Speaker 2 (16:55):
Yeah.
Speaker 1 (16:56):
Yeah, And so he's he's still troubled. He picks fight,
he screams, he has seizures, he has all kinds of issues, right,
but he's able to get by a little bit. He's
able to live a slightly a life that suits him more.
He started teaching at Sunday School and leading some of
the prayer groups. And this is his first experience with
(17:16):
real responsibility in his life. And this is kind of
part of what leads into Bethel House existing. And he
found joy and meaning and community in his life and
was part of a project that has radically changed society.
Even though he still got so anxious that he picked
fights and flailed around and got seizures like decades later, right,
(17:38):
it ruined his romantic relationships. Every time he got serious
with somebody, the anxiety would kick in. He'd have to
check himself into the hospital for a few days. Early
antipsychotic medications gave people dry mouth and without saliva, his
teeth rotted out but he lived a really full and
I don't know anyway. I actually I couldn't find out.
I kept trying to find out whether he was alive
(17:59):
or dead. Then I didn't succeed.
Speaker 2 (18:01):
Oh okay.
Speaker 1 (18:03):
Like most members, he lives off of his very modest
income from the worker cooperatives and also from disability benefits
Japan has or again pad I don't know whatever had
a voluntary program that provided the elderly and disabled with
financial planning to make sure they aren't scammed, which is
cool as shit like because we like constantly try and
(18:23):
figure out, like, well, what do you do about the
fact that old people keep getting scammed out of their money?
Right right? Well, currently you could do financial planning with
them and help them take care of their money so
that no one can scam them out of it. It's cool.
Speaker 2 (18:37):
That's amazing.
Speaker 1 (18:39):
And there's a Bethel Bank that provides loans to its members. Wow.
They have a complicated relationship with the rest of the town.
It started off rocky and not everyone loves them still.
They are rather neuroatypical and often contentious people, but they
provide a lot for their community, including just like raw
(19:00):
tourist dollars like every town on some levels, like, well,
a lot of people come here because you I guess
we don't hate you that much. Really, thousands of people
come visit every year.
Speaker 2 (19:11):
They actually come to visit, like the organized methyl the organization.
Speaker 1 (19:15):
To come like to the shops and stuff, to come
to the workshops that they lead. And they talk about
we're gonna get to the self study thing, I keep
promising him, dangling self study in front of you.
Speaker 2 (19:26):
You really are. I love it.
Speaker 1 (19:27):
And so once self study as a concept starts spreading
around Japan, people want to go to where it started.
Speaker 2 (19:34):
Does it become like the new like yoga retreat?
Speaker 1 (19:38):
Well, it's funny is that they still like the housing
that they offer that Bethel House itself offers is like
really cheap, like ten dollars a night to sleep on
a futon in a room full of people.
Speaker 2 (19:50):
You know.
Speaker 1 (19:51):
Yeah, once again we value our lack of profits. These
people absolutely could turned into like a money cult, you know. Yeah,
and they just didn't. They didn't turn into a cult
and they didn't turn into like a scam. You know,
my friend, a social worker at a clubhouse. Person keep
(20:12):
talking about when for a while, for example, right, he
wanted to see like, how are these people doing this?
This is amazing work that's comparable to his own work.
And he would go in and sit on a sit
in on meetings. And they also and this brings hundreds
of Taurus all at once. They throw a Bethel Festival
every year. One of the main events at the Bethel Festival.
(20:33):
This is the part I probably should have led with
because it's so cool. Televised all across Japan is the
Hallucinations and Delusions Grand Prix.
Speaker 2 (20:42):
What does that mean?
Speaker 1 (20:44):
Members would tell the most outrageous true stories of their
own delusions and compete. Really, people would describe all the things,
and as they describe these things, everyone the audience and
storyteller alike would laugh at this. So it's not like
they're not being made fun of. There being like you
wouldn't believe what I thought was happening last week, you know, right,
(21:05):
And then the audience votes for the best story. But
because everything has to be the most wholesome version of
everything that's ever happened in the history of the world,
best is not defined by the funniest or the like wildest.
It's defined by the one that involved the most people,
Not like the delusion that became a communal delusion, but
(21:26):
that was like handled by the most people. That really
showed that everyone came together to help the person deal
with it.
Speaker 2 (21:34):
Oh. Interesting, So the person who needed the most help
essentially like the most like like resources to bring them back.
Speaker 1 (21:41):
Or like got the most help, you know. Like, Okay, Well,
the example the only example I've found so far, it's
in the documentary in the book, and I haven't found
another example in any of the articles because all the
articles that I've found mostly referenced the documentary in the book,
with other exceptions with some original research. But around the
Grand Prix, I didn't learn that much more. Right, There
was a man who was convinced that he saw a
(22:01):
UFO and he wanted to leave on it, and so
his fellow members right were like, yeah, yeah, no, there's
totally a UFO, but you actually need a UFO driver's
license or they're not going to let you on, so
you should get the driver's Like, we'll take you to
(22:22):
the Rokawa Space Agency where you can get your driver's license.
And they took him to the psychiatrist, the friendly one.
Speaker 2 (22:30):
Okay, I was gonna say, did they take them to
the hospital.
Speaker 1 (22:32):
Yeah, yeah, they took them to the hospital.
Speaker 2 (22:33):
Yeah yeah, okay, okay.
Speaker 1 (22:36):
But like a friendly hospital, you know, not just.
Speaker 2 (22:38):
Like yeah I knew what was going on, which is
an amazing connection to have a supportive, actual hospital with professionals.
That's got to be a key proponent to that as well.
Speaker 1 (22:50):
Yeah, there's something very there's something very like the balancing
of opposites to create a whole new interesting thing happening
where it's like, say, chiatric hospitals are part of Bethel, right,
and so is this like kind of mad pride vibe
where they're like hell yeah, Like people who are like
hearing stuff will wear like a pin that day being
(23:12):
like I'm hearing stuff today, you know, to like signal
to everyone like right, and they like they're like all
into honoring mister and missus voices what they'll call the
voices sometimes, right, you know. But also still the hospital's
part of it.
Speaker 2 (23:26):
Yeah, I mean they understand the seriousness and that medication
is necessary and that all of these things are a
regular part of treatment. I think that's a constant conversation
because also they're helping to destigmatize and they're in a
comfortable zone that they can be and not have to
hide things which makes things worse, or not feel like
(23:47):
they have to hide things, which can make symptoms way worse.
So that's an amazing concept. Yeah, yeah, no, I I
think it's so cool. Yeah for sure. Also having a
festival around it.
Speaker 1 (24:00):
Yeah, and then just because they keep doing everything that
I randomly think is cool. So Bethelhiuse itself doesn't spread, right,
there's not a Bethel house in different towns now, but
its ideas are spreading even if they aren't direct clones.
That there's no direct clones that I'm aware of. Their
ideas have this major impact. I think most listeners know well,
(24:23):
especially now because I mentioned it a moment ago last episode.
I have a particular interest in disaster preparedness and seeing
that space taken back from like weird right wingers who
want to build bunkers full of rice and beans. And
I heard you on your very own podcasts say that
you're starting to get into this too.
Speaker 2 (24:39):
I'm starting to really look at things and then look
at things differently and start researching. So I'm here for
all the suggestions.
Speaker 1 (24:45):
Yeah, the world is a change in place, and it
surely is. We should be ready. You'll probably be able
to guess. You know who literally taught all of Japan
how to do disaster preparedness, especially for disabled people. I'm
fraid to guess is fucking Bethel House? Was it? Yeah?
Speaker 2 (25:03):
They I was seeing something sinister. I'm not gonna lie.
Speaker 1 (25:05):
Wow okay, oh yeah yeah no no see but now
you're on cool people, THEYD cool stuff.
Speaker 2 (25:09):
No, it's positive again, this is my thing, okay yeah
yeah yeah.
Speaker 1 (25:13):
And like I don't think that like every they didn't
like design the curriculum for the entire country, except they
kind of did around disability.
Speaker 2 (25:22):
And preparedness, which is amazing.
Speaker 1 (25:24):
Yeah, Urukawa gets hit by earthquakes a lot, and Bethel
House works hard to make sure that their members are ready,
and they work with the rest of the community too,
in cooperation with the town's administration. They work with Mutual
Aid distribution after disaster, and all of their locations, all
of the group homes, all of the offices, all the
workplaces have evacuation manuals and they do trainings and drills,
(25:48):
making certain to include how to evacuate people who use
wheelchairs or have other like physical disabilities because for the
specific thing that they're generally doing right in this particular
case is preparing to get to high ground, which is
something that's particularly hard for people with mobility issues, and
that's what they focus on. Every location has disaster supplies
(26:11):
for crisis and then after they do these drills, they
get together and they analyze how well they did and
what needs improvement. Members with physical disabilities reported feeling like, Oh,
I won't be forgotten and abandoned in an emergency, and
I was able to reach higher ground in time. And
it was this sea change moment, right because a lot
(26:34):
of people with mobility issues have also told me this.
They're like, Oh, I'm just expecting to be abandoned. I
don't wanna get in anyone's way or whatever. And they're like, no,
we all got to safety because we tracked who had
what kind of mobility needs, and we took them into
account and we accommodated them and we did it right.
And so the Japanese National Rehabilitation Center for Persons with
(26:58):
Disabilities at their model and adopted the nationwide.
Speaker 2 (27:03):
That's amazing. Yeah, I think we need to look at
their model. I mean that's the little thing that's popped
up recently, obviously with all the crisis that have happened
around our country alone with the wildfires. I know, that's
a huge conversation and the disability community about the fact
that people have been left behind and so many people
have been forgotten, and it's because of the discrimination and
(27:26):
the lack of awareness in including this disabled people in
this conversation and preparing. I mean, to be fair, they
still didn't prepare for anyone. Let's just be real honest,
like totally. Yeah, it is bad all around, but the
lack of awareness and the fact that people they're invisible
havel to time. People with disabilities are invisible most of
(27:48):
the time, especially when it comes to crisis moments. That's
amazing and that is lovely to hear. That is amazing inspiring,
and that we need to learn what they did and
we need this manual.
Speaker 1 (28:01):
Yeah, desperately. Yeah, I am curious because I think that
it gets into specifics of like I read, I read
a transcript that it's going to be in the sources
for people want to look. I read it like a
I think it was a transcript of a talk given
by someone outside from Bethel speaking outside of Japan about
their disaster preparedness, and like you know, I think it
(28:21):
has to do with things like keeping track of each
other and knowing who has what needs and then making
sure that your plan includes those things. And yeah, making
sure that you have a plan at all, you know,
is like, right, the biggest step. And so when there's
no plan, people who are very able, you know, like
(28:41):
twenty five and workout all the time and have no
other problems, they are going to be do better than
everyone else, right, right, But if we, if we start
doing some preparedness around it, we can do so much better.
Speaker 2 (28:54):
Right. One of the things that they, I'm sure is
key is that recognizing everyone and allowing everyone have a
voice those meetings that it puts faces on these individuals
and you remember who they are personally, and that makes
a whole different conversation in what you're trying to do
and who and who you need to include in these conversations,
(29:15):
you know, And I think that's an amazing feed that
As an introvert myself, hearing about these meetings made me
tired totally just scaring about it. I was like, oh God,
another one and another one, Like I'm glad, but no,
I'm gonna be the one that's like just feed me.
I don't want to talk to you. If I'm having
(29:35):
a day that's full of visions, I got enough people
to talk to. We don't I just need you to
give me food. But that type of togetherness, that type
of accountability, that allowing them to work there through their
own situations brings a lot to the autonomy, as well
as being visible and given voices. But I think that
says a lot to that, which again there are ten steps,
(29:59):
one hundred steps, a thousand steps ahead of so many
other mental health treatment centers. So that's often again medication
only and or don't know how to allow autonomy for
people with disabilities totally.
Speaker 1 (30:13):
And like, you know, it's funny because when I was
reading about like oh everyone was locked up in their
home back in the day, and I'm like, wow, that
sounds terrible. And then I'm like, I mean there's a
like people with disabilities sort of deal with that anyway,
like like all kinds of disabilities like still and like today,
you know, people with mobility issues often don't. I mean
many people do. I'm not trying to make huge generalizations,
but there's like more of a struggle because the society
(30:36):
at large doesn't accommodate people with me. You know, mobility
needs and so like people are left out right, and
so it's like a group of people who all experience
that or some version of something right, you know, people
who deal with psychiatric issues or whatever are able to
then be like, well, of course we don't leave anyone behind,
(30:57):
even the people I can't stand. I yell at them
all the time that probably should, but they do, you know,
But of course we're gonna help get the wheelchair up
the hill, you know, or whatever.
Speaker 2 (31:04):
But we can work through it. At the Friday meeting
when I tell them it wasn't you, it was the
pac Man, Yeah, totally. Which again, like I said, I
envisioned a blue Why was it a blue pac Man
that I envisioned when you said pac Men to me,
I don't know.
Speaker 1 (31:16):
I mean, it's a yellow pac Man and the things.
Speaker 2 (31:18):
That I I know it's a yellow pac Man is yellow,
but in my head it was blue. Yeah, speaks to
my own conversations in my head. But I think it's
also an amazing like when we talk about other ring
people and having them being so unique and then making
it making them ostracized for that. But in this portion
(31:40):
and there's in this community, they love that and they
celebrate that, and then they celebrate that in a way
that all gives them a willingness to share a yeah,
and then a willingness to sit in it. Yeah, and
it allows them to sit in it. And I think
that's one of the biggest problems we have. Like you
continue to talk about how it's not a cure, we
know a lot of we have now finally come to
(32:00):
the point of understanding this is not a cure thing.
This is a treatment thing. And but that treatment does
not mean you have to make suppress everything and for
you to be the status quo. That's not what it
should be, because that's too much, that's too overwhelming, that's
too hard for a person who does who may not
have these diagnoses, who you would consider being on the
(32:22):
more on the.
Speaker 1 (32:24):
More neurotypical side of things.
Speaker 2 (32:25):
Yeah, thank you. I think a moment with that. But
this conversation of allowing them to be, which gives them
a lot more freedom to destigmatize again these types of diagnosis,
which is part of the problem. Yeah, rant done.
Speaker 1 (32:42):
No, No, I just I was thinking about because I
just get so excited about it. But you know what,
I also get excited about coming up with cynical ways
to transition to ads.
Speaker 2 (32:52):
Oh that okay, I'll give you that. That's not you're
just going to say ads. I'm like, don't lie to me.
Speaker 1 (32:56):
No, no, I'm done. I used my one liar earlier
and I claim it. Advertisers are good or whatever, but
some of them might be. I love when we have
the like ads that are like gopher walks in the forest.
You know what, I'm going to go free one go
for walks in the forest, Bring people you care about,
don't get lost, bring supplies, bring supplies, and then whatever
(33:17):
else is being advertised, and we're back. So I've been
holding out this whole time on self study.
Speaker 2 (33:32):
Yeah, I'm still waiting.
Speaker 1 (33:34):
Well, now it's time.
Speaker 2 (33:35):
Okay, tell me about it.
Speaker 1 (33:37):
There's the thing that they are doing that seems to
have the widest impact. Now, again, this is not creating
direct clones, but people looking at parts of their model
and being very inspired. And there's a word that comes
out of Bethelhouse from the early two thousands, tojisha canq
you Tojisha is an older part of that. It's the
older word out of that, and it's a word for
(33:59):
people who are marginalized in Japanese society. It's sort of
self identifier that's hard to translate directly, kind of what
you're saying earlier about people who are othered. You know,
this is a word for people who are othered, and
it's a self identification word for it. It comes out
of court proceedings as a legal term for someone who
is dealing with discrimination. In the nineteen seventies, disability activism
(34:22):
in Japan was picking up steam. People with physical disabilities
were able to say like, hey, we need accommodation. A
related movement of people with mental health issues started saying
us too, but had a harder time clarifying exactly what
was needed in terms of accommodation. And during this time, folks,
including sexual minorities started identifying as toojisha, And so it's
(34:44):
kind of a cool word that includes like all of
these different people who are struggling, even if it's like
entirely different. It's not just ability or disability. It's like
all these different groups of people. There's actually a genre
called tojisha manga right now, which is comics about mental
health issues. But thanks to Bethel House in the early
two thousands, there's a phrase or word or whatever it's
(35:06):
a typhonate it. I don't know I accounts as a word
or not. I don't know enough my own English grammar
to tell you tojisha kenk you. And this gets translated
to the science of the self or self supported research. Basically,
a schizophrenic member of Bethel set his own house on
fire in the early two thousands and then kept asking
(35:29):
himself and the therapists and stuff like why do I
keep doing shit like that? I don't really want to
set my house on fire, you know, And the social
worker responded that maybe he should begin to study himself seriously,
like start a serious study of the self, and the
idea spread around the Bethel community. As aon magazine put it, quote,
(35:52):
instead of being passive patients who felt they needed to
keep their heads down and be ashamed for acting differently,
they could now become active researchers of their own ailments.
So jisha kenk allowed these people to deny labels such
as victim, patient, or minority and reclaim their agency. And
this is similar in some respects, but goes beyond when
(36:15):
I learned in cognitive behavioral therapy, which if I'm do
you every want to hear me shout out a thing
that did me a lot of good in my life.
It was cognitive behavioral therapy. It doesn't work for everybody.
That's a kind of whole thing about it, but sure
helped me with anxiety. And a study of the self
sort of is a weird part of that, and it's
based a little bit on that, but it doesn't end
(36:36):
at the self. These self studies are then shared in
a community to keep quoting aon about it quote. At
Bethel House, members found it liberating that they could define
themselves as producers of a new form of knowledge, just
like the doctors and scientists who diagnosed and studied them
in hospital. Wards. The experiential knowledge of Bethel members now
(36:59):
forms the basis of an open and shared public domain
of collective knowledge about mental health, one distributed through books,
newspaper articles, documentaries, and social media. And so it's a
sort of citizen science around mental health. By sharing their
experiences and findings, they're able to then look around the
(37:20):
room and be like, how generalizable is this thing that
I'm experiencing? And I feel this all the time. With writing,
I will talk about some experience or feeling I've had
that feels like real dang unique to me, right, And
I'm like, well, no one's going to resonate with this
weird shit, and then find out that people do.
Speaker 2 (37:40):
Mm hm.
Speaker 1 (37:42):
So Jisha kenk you started spreading. And this is when
more of the tourists started coming to Bethelhouse because they
were like, this idea has meant so much to us.
These self studying people started giving talks around the country
and the world about what they'd learned, and this is
also what led to the hallucination and delusion Grand Prix mm.
(38:03):
And it's no longer a Bethel House thing or just
a Bethel House thing. In twenty fifteen, it started up
at the Research Center for Advanced Science and Technology at
the University of Tokyo, who have further sort of systematized it,
developing ways to run the knowledge produced by this self
study through tests basically and kind of create this whole
(38:25):
alternative parallel science structure, but not one that's just like
based on vibes and feelings, like it's like, actually, it's
like a rigorous study of the self and then applying
it to be like it's the like who else feels
the way that I do? But in a like But
then you take notes then you like do studies on it,
(38:45):
you know, And it started largely by this schizophrenic group,
but it is being used by people with autism, people
with addiction, kids with learning disabilities, people with physical disabilities,
people with mental disabilities, all kinds of people. And then
because it's the study of outsiders, right, they've even worked
(39:07):
with people who are outsiders for being incredibly lonely in
competitive fields, Like this has been used by an Olympic
athlete and an astronaut, you know, like because you're you're
isolated if you have those jobs, right, Yeah, so like
the idea that the isolation is the thing. So then
you have people who are isolated by even being at
(39:28):
the top. Right, I got really excited about this. How
did this compare to what you're expecting out of Yeah, go.
Speaker 2 (39:37):
Ahead, I'm wondering, like because it does like in a
way of like being a social worker myself and being
in that world. When I think about we would always
laugh about the fact that all social workers diagnose themselves, Yeah,
in such a harsh manner. And then like every time
they find out a new diagnosis or a new type
(39:57):
of symptom, like yeah, that could be me. Oh god,
I am like how often we will do that for
ourselves and then have to like regroup and be like wait, wait, wait, yeah,
but does this mean this? So like it makes me
kind of laugh in that level of like it's really
especially for people who are on that level of studying
this helping in these industries or fields and then coming
(40:19):
and just seeing that that you're just diagnosing or you're
just analyzing every damn person and yourself and you're analyzing
yourself in that situation. For me, I analyze so much
of like, oh my god, I think I said this
wrong and this word is this this like so in
my head. So in my head it is like have
I always been doing this? And I just don't come
(40:40):
with a solution like right for me, I need to
go to this place, I think.
Speaker 1 (40:48):
But then if you're doing self study in a like
rigorous way, you would know the answer of have I
done this before?
Speaker 2 (40:54):
Right?
Speaker 1 (40:55):
You would be able to say, like, you know, I
think about like I use cognitive behavioral therapy to lessen
anxiety attacks that I was having that were ruining my life. Yeah,
And one of the ways that I would do that
is I would literally track each ebb and flow of
panic as it was happening, and so I knew going
(41:17):
into a panic attack that I could be like, well,
if it starts at about an eight on a scale
of one to ten, I'm in for about a thirty
minute ride, right, you know, or actually at a NATO
was probably starting out about two hour ride.
Speaker 2 (41:29):
But like, let's go say that's a high number.
Speaker 1 (41:31):
You know, if I come in at like a six,
I'm in for like a thirty minute ride, you know,
And I know it's going to drop down to a four,
and then it's going to go up to a seven,
and then it's going to go back to a three.
I like you track it. Yeah, so you could say
to yourself, like, well, how often do I come home
from social situations completely convinced that everyone hates me? Right?
(41:51):
And then you'd even be able to be like, upon
further study, it turns out that everyone does not hate me,
you know.
Speaker 2 (41:57):
Just these three people?
Speaker 1 (41:58):
Yeah exactly, Yeah, like the person I actually offended. Actually,
the thing that always happens to me is I will
leave social situations and be like, oh, I really screwed
that up. Everyone hates me, and I'll like call to
like apologize to people. That's something I said, and they'll
be like, no, I'm not mad about that. I'm kind
of bad about this other thing.
Speaker 2 (42:17):
But this other thing that you did that was real bad.
Speaker 1 (42:20):
Yeah, why do you leave the dishes in the sink?
Everyone's mad at you? You know, I'm like, ah, you know.
Speaker 2 (42:24):
Yeah, No, I think it's very interesting. Again, this gives
a lot of control to where it's not you as
the patient, you as the person that needs to be
solved and fixed, as opposed to you recognizing your patterns
and just finding intervention plans or or not even intervention
plans necessarily, but just how you can best maintain that situation. Yeah,
(42:48):
and that's very spot on. I mean, that's the fact
that they did this this early, that early on is
significant obviously, Like that's why it's being studied because it
is this a thing that's again, but they're all all
of their phrases are so like newer to me, Like
that is so becoming more accepted today, that whole level
of like just care for yourself, you know it just okay,
(43:11):
live in thing that is now, it's not a big deal.
You hear those voices, Honor those voices, you know, as
opposed to suppress them. Deny them and pretend like everything's okay,
which would have been like fifteen twenty years ago to
see that that's they were obviously leagues ahead, where it
does show a level of humanity and understanding disability, which
(43:34):
is again a big portion of what's missing in all
kinds of treatment.
Speaker 1 (43:38):
No totally, and like by being their own experts, and
you're talking about how like all social workers are self diagnosing,
it's kind of like, like all my therapist friends are
the people who are like the least hinged in their
sheer therapist friends who are listening to this currently, I
love you, You're great. The people who are like therapists
neurospicy in their own lives, you know, and like often
(44:01):
need to hear their own advice. You know. Yep, But
it kind of like makes sense, right, It like makes
sense that people who are like care about this stuff
might have some relationship to it, whether they're like fully
in it or not. And then also the fact that
because they do go beyond just like these are my
own patterns, they then say, well, now we're creating a
(44:21):
body of work together. So I don't just say, oh,
I know what my panic attacks are, Like I can
go and be like why I can't right now, but
like you could theoretically be like, what are other people's
panic attacks? Like right, you know we have this whole
body of work with charts and graphs of like, right,
you know what can cause this or whatever?
Speaker 2 (44:41):
Anyway, No, yeah, it is. It lays a lot of groundwork,
and especially when you again talk about interventions and treatments.
Nothing is one size fit all, so would this type
of conversation with everybody doing the self actualization type of thing.
But it does help he give unique experiences and unique
(45:03):
pinpoints and give different options of treatment. When you see
these types of diverse reactions and conversations, because again, like
the original pac Man dude, I've already forgotten his name, apologies,
Blue pac Man. In my head, it's okay Kiyoshi Kyoshi,
like his experience is very different, and he was able
to do one way to thrive, not completely to the
(45:25):
point that he wanted to, I'm sure to a certain
degree about having relationships and doing all of that, but
he was able to thrive and fill find a community
like that type of level and being able to do
that individually and then having that collection as data for
others who are in similar situations. That is phenomenal and
it takes a lot of research and money in time.
Speaker 1 (45:47):
Yeah, well it did it with that much money. But yeah,
they but they had to have resources. They had to
build their whole own infrastructure to support it for sure.
And it really it gets at the fact that like
sometimes a group of people who just get together to
be like, well, I don't think society is very well
set up for us. We should do something about it. Yeah,
(46:09):
can have impacts that are so huge. Again, even Bethel
House hasn't replicated. Yeah, but some of the things that
they hundred of them got together and figured out starting
with the four of them or whatever, you know, like
have potentially changed the way that science can work, you know,
(46:29):
like have this like huge impact. And it it's the
kind of thing that before I started this podcast, like
you know, there's that Margaret Meade quote. It's like, oh,
never be convinced that the small group of people can't
change the world. It's the only thing that ever has
or whatever, right, And that's always like the quote is
like overplayed, you know, because it's like usually when ten
people get together to completely change the world, unless they're billionaires,
(46:51):
they which cause they're going to make it worse. Right,
You're not going to change the whole world if you
set out to change the whole world, but when you
set out to be like this local thing that we
want to accomplish, and then accomplish it in a way
where we can talk to people about how we accomplished
it to see if other people can do other things.
(47:11):
You know. Yeah, well, okay, to go back to my script.
So this framework, the citizen science kind of thing that
they're doing, it's not one hundred percent unique. It is comparable,
for example, to the citizen science advocated for by act Up,
who we did an episode on, which is that Radical
AIDS group. People living with or dying from AIDS became
(47:37):
some of the world's most respected and impactful experts on
their own ailments because no one else was doing it right,
and even if they had to break a lot of
laws in order to prove that they knew something about
their own problems. And I want to give Kiyoshi, the
founding member we were just talking about, he gets the
(47:58):
final word in the documentary Bethel, and I think it's
worth closing out with here too. He said, quote, I
want viewers to know that people with psychiatric disabilities aren't abnormal.
If you have psychiatric disabilities or are ill right now,
please live life with all your energy. Living life is important.
Life is something that God has given us. And even
(48:20):
if you are ill right now, please live life with
all your energy. Just because you are ill is no
reason to close your soul to the outside world. People
with psychiatric disabilities or people with physical disabilities, for people
who are about to begin life, or people who are
at the end of their life, I think the most
important thing is to live now. It is really like that.
(48:41):
I really like even the whether you're starting or ending
your life. Like one of the things that I didn't
end up writing into the script, one of their little sayings,
was something like I don't mean to be diminutive with
their little sayings, but you know, they have a bunch
of little pithy sayings, right, And one of them is
like celebrate a life and decline or something like that.
(49:01):
And at first I didn't understand it, but it was
explained later more that it's like you need to accept
that sometimes most of the time, most of your life,
you're past your peak, right, You're past your like physical
and cognitive, you know, whatever or like things get worse
(49:22):
and it's okay, Like that is a natural cycle of life,
is that you like things get harder and eventually they're
over right, but like that's all right, and you can
do amazing stuff and like live your best life wherever
you're at on that scale anyway.
Speaker 2 (49:42):
No, I mean that absolutely makes sense. I think about
a creator, a disabled creator who talks about the fact
that being able bodied it's actually very temporary.
Speaker 1 (49:52):
Oh yes, whether it's age or.
Speaker 2 (49:54):
Like you know, age or or accidents or whatever. Yeah,
you will be a part of that.
Speaker 1 (49:59):
Yeah.
Speaker 2 (49:59):
Community. Now you just have to acknowledge that everyone has
the right whenever you know, whoever they may be the
disabilities and or whether it's invisible or not, that to
be treated as human kindness and like to be prepared
that you still have to live life like this is.
It shouldn't have to be like the tragic inspiring tales
(50:22):
of those people who suddenly get into an accident can't
walk in so they choose to die like that. That's
not the story that needs to be celebrated necessarily, Like
that's kind of like, oh, yeah, why are we talking
like that? But to live to age, to get to
that point as a privilege. The fact that you have
lived that long where you've gotten to this point and
being able to celebrate that is is a part of
(50:44):
that journey. I say this as my back is killing me.
Speaker 1 (50:49):
I think anyone who's like done a little bit of
aging is like on some level a where like when
you hear that quote, yeah, the idea that you know,
being able bodied is temporary, Like right, that's like, oh yeah, no,
I I can see how that's true, and it makes
it you know.
Speaker 2 (51:04):
Like whether it's your knee, yeah, my knees are popping.
But yeah, this is an amazing story and everything from
like the fact that again they've created their own community,
which again we see throughout history, if something's not there already,
people are like, well I'll create that, I'll do it.
And those people are phenomenal because without even trying, they've
(51:26):
done something incredible that people look at and be like
oh wow, okay and learn from and then they go
into being able to provide a community that has a
lot of life lessons. I need those sayings on a
poster with Kittie on it, right, those inspirational ones.
Speaker 1 (51:44):
Only it would be like it's okay if you fall
off the branch. It wouldn't say hang in there and
be like right, it'd be like hold on, why you can?
I guess good luck, enjoy that moment, look at the view. Yeah,
it happens to us.
Speaker 2 (51:55):
All happens to us. All.
Speaker 1 (51:58):
Yeah, well, I guess at that. The equivalent of that
is the meme where it's a bunch of raccoons and
it says, uh, death is coming, eat trash, be free free.
Speaker 2 (52:09):
That's metal sounding.
Speaker 1 (52:11):
Yeah, that might be more of a meme in my
community than the broader community.
Speaker 2 (52:15):
I like it. I love raccoons.
Speaker 1 (52:17):
I need that. Yeah. Well, thanks for listening to me
talking about Batthelhouse. And if people want to hear you
talk about stuff, where can they do it?
Speaker 2 (52:26):
You could come listen on stuff mom never told you where.
We talk about a lot of different things. We talk
about women in the apocalypse like you were talking about,
We talk about women in religion. We actually talked about
why soup is feminine? Apparently. Oh really did you know that?
Speaker 1 (52:40):
I love soup? I do do.
Speaker 2 (52:41):
I've made four different ones this week.
Speaker 1 (52:43):
Amazing good.
Speaker 2 (52:45):
It's soup weather, y'all, it really is. So. Yeah, you
can hear different conversations about that you can hear old
conversations from old hosts talking about like why uh pockets
were not given to women and how it is with
such anistic Yeah, you know, all the good things. We
have a book that's been out for two years, but
if you want to go read it, it has a lot
of other information as well. And yeah, you can find
(53:06):
me on Blue Sky McVeigh sam or on Instagram.
Speaker 1 (53:11):
I think that's it awesome if you want to hear
what I write, I guess read what I write would
be the proper verb to use. I have a substack
It's Marter Kildro dot substack dot com and every week
I post an essay about stuff and holding on to
hope or whatever, letting yourself fall off the branch I
don't know, and most of the big important essays on
(53:34):
that are free. And then every other week I do
a more personal essay that's just for paid subscribers, but
don't if I think it's like super socially useful, I
will make it free so you can check that out.
You can go look up The Immortal Choir Holds every
Voice on Kickstarter. It'll be launched in March of twenty
twenty five. If you're listening to this far in the future,
(53:54):
just go buy the book somewhere or scavenge one from
what's left of a library in the apocalypse. I don't
know if you're listening to like twenty twenty seven, that's
going to be your only option. But you know, twenty
twenty five, twenty twenty six, you probably still have a
regular commerce available to you. And yeah, we kick starting that.
It's the third book in the Daniel Kaine series. And
you can follow me on all the various social media's,
(54:15):
except that's not true, not all of them, Instagram and
Blue Sky. I guess I'm technically still on X but
I don't. I hate it, so all right bye everyone.
Speaker 2 (54:26):
Bye.
Speaker 1 (54:32):
Cool People Who Did Cool Stuff is a production of
cool Zone Media.
Speaker 2 (54:36):
For more podcasts on cool Zone Media, visit our website
Foolzonemedia dot com, or check us out on the iHeartRadio app,
Apple Podcasts, or wherever you get your podcasts.
Cool Zone Media, Hello, and welcome to cool people who
did cool stuff. You're a weekly reminder. Then what Margaret
is it doesn't have a producer. She forgets to do
the credits, but not this time because I and Margaret
Hill Joy. That's one of the credits. Another credit is
Samantha McVeigh our our guest. I was gonna say host,
(00:22):
but I'm the host.
Speaker 2 (00:23):
Uh, you're the host. I'm definitely not leading this charge.
Speaker 1 (00:26):
You sure I can send you the script? You could
just read it to me?
Speaker 2 (00:29):
Oh my god, could you imagine fun? Could you imagine
what happens?
Speaker 1 (00:34):
Especially because my script is like, I mean, it makes sense,
but it's not like perfect anyway, whatever, it's not exactly
what I read.
Speaker 2 (00:41):
Mine is like plot points, and I was like, good luck.
Speaker 1 (00:45):
When I first started doing the show, I was like, oh,
I'm just gonna do plot points. And Sophie was like,
you're gonna write a script and I was like, I'm
gonna write a script and I'm so glad. But it's
a different it's a slightly different format. You know.
Speaker 2 (00:57):
I was gonna say you were just heavily researched, and
our heavily research, but not to this level. Right, like
we have a lot of like quotes and numbers and
statistics like that's what we have.
Speaker 1 (01:06):
I think totally the kind of thing you can do
in like several hours as you're getting ready for an episode.
Speaker 2 (01:12):
Yeah, yeah, I don't have to read a lot of books,
although I have.
Speaker 1 (01:16):
Well, thank you for helping me prove my point that
I will forget the credits. But I remember that was
just finish the credits, our producer. I mean, there's actually
literally nothing that says I have to This is like
the way I do it, and so then I feel
like I always have to do it the same way.
Our producer, Sophie Licktraman, who isn't here right now, and
so it's just.
Speaker 2 (01:35):
Us we miss you, I.
Speaker 1 (01:37):
Know, and our audio engineers Rory Hi, Rory Hi, Rory.
Our theme music was written for us by Unwoman. And
this is part two in a two parter. So don't worry.
You're halfway there or unfortunately you're halfway there. I guess
depends on how much it's sad, I know, but it's
a two parter about Bethel House, which is a group
(02:00):
of mostly schizophrenic folks in Japan who have fundamentally changed
a lot of understandings around how we can deal with
psychiatric care and it. If you want more background, you
can also listen to our Fountainhouse episodes, although that's thousands
of miles away. But we were just talking about how
Bethel House has built a perfect slacker worker owner culture
(02:24):
and one of their core principles, this is the one
that challenges me the most. One of their core principles
is meeting before eating. That is to say, everything is
a meeting. I don't think it's specifically trying to say
like you can't eat until you finish a meeting. I
think what they're saying is like meeting is even more
important than food. But I'm not one hundred percent certain,
(02:45):
even though I've read a couple different takes on this,
everything is a meeting at Bethel House. As an anarchist,
I am used to this. I also dread it, But
when it's stuff that actually matters to me with people
I care about, it's not so bad. Every morning they
have a meeting with whatever members show up. Right, if
(03:06):
you join the Battelhouse, you're not like forced to come
a certain forced to do anything. But if you show
up to the meeting, every person in the room, staff
and members both will go around and discuss how they're doing,
both physically and psychologically, and then how many hours they
feel like working that day.
Speaker 2 (03:27):
They set their own schedule.
Speaker 1 (03:28):
I like it, yeah, and then basically the person who
facilitates the worker, owner, business or whatever that day will
then be like, okay, well if you're working from twelve
thirty to one fifteen, then you know, and they like
do all the balancing to make it work right. This
takes a long ass time at this morning meeting talking
about how they feel and how long they want to work.
(03:50):
It also means that everyone's health is everyone's business. And
it also means you know who's really grouchy and wants
to be left alone that day? And that's really relatable.
Sometimes when I'm in meetings, I kind of start off
by being like, I'm grouchy, going to mostly stay off Mike.
As for those staff members, they have no lanyards, they
(04:12):
have no uniforms, there's nothing to distinguish them from members.
These are like the social workers and stuff who they
hire to to help them. After the check ins, people
from each business give detailed reports down to reading like
all the mail order orders that have come in the
mail and stuff. And the reason for that is that
this fairly rotating cast of people doing the work right,
(04:35):
and so you don't want to feel like, well, I
worked yesterday and if I don't work today, everything's going
to fall apart. And so there's like really detailed report backs.
For example, my friend while while he was there, they
had a radio station and they you know, ran radio broadcasts,
and he went and he asked and he was like, well,
(04:56):
what if no one wants to work at the radio
station today? And then the guy was like, well, and
then there is a radio station today, that's fine. If
no one feels like doing the work, then it probably
shouldn't get done. Eh.
Speaker 2 (05:08):
I was gonna ask that question. What happens when they
just wake up to say I don't want to do this
today and no one does whatever needed so they just like, yeah, okay,
not getting done today.
Speaker 1 (05:17):
Then it doesn't happen, huh, and they just deal with it.
Speaker 2 (05:20):
I like that attitude.
Speaker 1 (05:21):
And this is actually one of the things that differs
from the clubhouse model the fountainhouse model, which also has
kind of an emphasis on worker owned businesses and emphasis
on getting work done and what happens if like a
Fountainhouse member has a job outside of Fountainhouse, like they
have a job at like a regular business. Is that
if they can't work because of their you know, mental
(05:42):
health issues, then a staff member from Fountainhouse will go
and do the work, right, like one of the social
workers who's hired by them will like go. But with
with Bethel House, it's like, well, it just doesn't get done.
That's okay, not even as like a passive aggressive like, well,
I guess we don't have a radio station today.
Speaker 2 (06:00):
You know, Yeah, I guess you can't.
Speaker 1 (06:02):
We can't have that today. Oh well yeah, and whose
fault is that? And so that way, like the number
of businesses they have like kind of ebbs and flows, right,
so it's not even like seen as a failure that
they like used to have more and they have less
now or whatever. You know, Like businesses come and go
as people feel like doing them. It's so interesting, and
(06:22):
they run a bunch of successful businesses with this model.
Most of them are supplementing their income with social services
and things like disability payments and things. But yeah, they
run businesses interesting. And this doesn't mean they don't have worries.
(06:44):
They actually cultivate worry to some degree. Psychiatric hospitals are
designed to remove your ability to worry. This is a
way that it gets praised. So Bethel is designed to
make sure you can worry. Problems should be welcomed and solved,
not fear and run from. And when they have problems
(07:04):
socially at Bethel House, which they do constantly, right, these
are welcomed as well. There's a psychiatrist who works at
the hospital who also works with Bethel House's name is
doctor Kawa mura or at least he did. Again, a
lot of like the book that I'm referencing came out
in twenty thirteen, and most of the ethnographic work and
it would happen in two thousand and five. And you know,
but doctor Kawa Murha, a psychiatrist at the hospital said, quote,
(07:28):
it's overwhelming the richness of their self expression. They're very loud.
I think it's important that they are able to express
anger and get into fights with their peers. When you're
angry at someone, in reality, you want their love. So
being able to express your anger is extremely healthy. If
you aren't able to express anger, what happens is that
(07:48):
the anger turns into malice in contrast to anger, Malice
is the desire to destroy the other party and is pathological.
Speaker 2 (07:58):
That sounds very Buddhist.
Speaker 1 (08:00):
Yeah, probably. Yeah. Oh it's interesting, yeah, because it's like
such a like mm.
Speaker 2 (08:05):
Hmm, it's kind of that whole like balance, yeah, ideals
and like like if you're true like Buddhism and like
nothing this level. But but the fact is that it
has to have a way to have a resolution and
whether if you how you handle it, what that resolution
will be.
Speaker 1 (08:23):
Yeah, that's interesting, that's cool. I really yeah, like I
really like this idea. It really like through me when
it was like anger means that you want someone to love,
and I'm like, no, I'm angry at people all the time.
And then I'm like, I mean one is just words
being different things depending on the context in which we
use them, right, but clearly because there are like I've
been in social circles where we all start yelling at
(08:43):
each other and arguing and stuff, right, and often that
is around like I feel isolated and I'm not heard
because you don't care about me, and so now I'm angry,
you know. Also, as part of their meeting culture, besides
just being willing to argue is that they sing a
whole bunch of songs, including one called the Welcome to
Bethel Song, and I'm not going to sing it.
Speaker 2 (09:05):
Oh, come on, you're a musicians. Come on, I know what.
Speaker 1 (09:08):
It's not in my head at all. But I have
the lyrics, okay, and it These are some of them,
it's not all of them. Isn't schizophrenia terrible? With its hallucinations,
voices and delusions. You just can't stand not doing anything,
so you end up cutting yourself. Isn't insomnia terrible? Making
noise at all hours of the night, you keep your
family up, no one in the neighborhood slept all night.
(09:31):
Isn't mental illness terrible? It is our gift from God.
Even if we're different from normal people, we're all first
class sickos. I like that.
Speaker 2 (09:43):
Yeah, me too, first class Yeah.
Speaker 1 (09:47):
And you know they're describing that, the fact that they're like, well,
this is hard. I kind of wish this wasn't the
way I was, but like, it's all right, this is
who I am. I'm not trying to fix it. I'm
trying to live with it. Most of any given day
is meetings. There's the Friday afternoon meeting in which people
(10:08):
talk about the entire week. There's also social skills training meeting,
so it's like meeting is kind of being used flexibly here.
There's also like workshops and stuff. Right, yeah, so they
have a social skills training meeting and people can go
to this. Everything is optional, as I understand it, and
you can go and then talk about social situations coming
up and then like workshop them and be like how
(10:30):
should I handle this social situation? And you can ask
for help, you can get for feedback about what you've
already done. They roll play situations and then talk about
what they could have done better, and then like switch
and you're like, now you're going to be the guy
who's talking to you instead. You know. M many, but
not all of the members live in various group homes
that work is housing co ops. I don't know about
(10:52):
the ownership structure, but they're all equals living there as
far as I can tell. I read one really relatable
piece by a hardcore shutting who described how she liked
living in a group home because even when she ignored
everyone all the time, she still always ate because people
figured out how to feed each other. She was like,
I would have starved to death. I was living alone.
Now people make sure I eat and then I ignore them.
(11:13):
All Over the decades, Bethel House has expanded, but not wildly.
So there's about one hundred or one hundred and fifty
people currently involved in it, depending on which source I'm reading.
They've bought several properties as people leave the tiny dying town.
They bought an abandoned print shop and named it New
Bethel where the meetings are now or were again. I
(11:36):
don't know, I don't know what's happening today. They also
bought an old bookstore the owners fled in the middle
of the night to avoid creditors. That's like how much
of a dying town it is, you know? The downstairs
is a storefront called burra braza, which is derived from
a word for basically like window shopping or loitering, people
who drop by shops just to wander around, and so
(11:57):
they like even name it after like, eh, can you
buy some of you want? I don't know whatever, you know,
like worker owner members might start with seaweed packing in
order to practice socializing with just coworkers. Right, You're like,
I don't talk to anyone, No one understands me. And
then you're like, okay, well go pack Seaweed. They're like, okay,
(12:18):
I got kind of used to talking to the people there.
Now I might go to the store and deal with
strangers and then be like, Nope, tomorrow I'm back to
seaweed packing, or tomorrow I'm back to hanging out by
myself in bed, you know. And then upstairs of the
no longer bookstore of the everything store is Sunshine House,
which is a woman only group home of Bethel members,
(12:41):
and they have a group that I think is really
cool because it's called They have a weekly group called
Women Anonymous, which is modeled on Schizophrenics Anonymous, So it's
basically just being like, we're going to have our like
group therapy talk for just women, and they talk about
women's issues, like how to deal with the patriarchy within
Bethelhouse because it's not fucking perfect. And I even like
(13:06):
with that, I get annoyed because I mean a lot
of the work that has been done around this, like
a you know, a woman wrote the primary book on this, right,
but it's like mostly primarily naming you know, a male doctor,
a male minister, but other women are heavily involved in
even the initial shaping of the culture, and like, as
has happened so many times on episodes, I've done like
(13:28):
a little less likely to be the figures that are
focused on, and so I usually have far less information
about them. Right. One of the things that they've worked
hard to do is honor the voices that people deal with.
And this is again it's not like a hooray, we
have issues, but it's a way to say, like, you
know what, there's something interesting here too. People who hear
(13:49):
voices are honored, and they sell a bunch of merch
festooned with their visions, right, which I think is just
a cool way to do it.
Speaker 2 (13:58):
Technowledge it.
Speaker 1 (13:59):
Yeah. Yeah. Hallucinations are personified as Gensho sons honorable voices,
which is a way to separate them out from the
people who see them. Right. So it's like that wasn't
you that did that? That was a Genho son, And
their main brand icon is a Genho son presented as
a pac Man figure. And one of the things is
(14:21):
like running to eat that guy who's like sort of
the mascot, you know, right right, I love that. Yeah,
And these are contrasted with okiakusans, which are honorable visitors,
which are negative self thoughts, and these are seen as
coming from inside the person. Everyone gets okiakusans, but schizophrenics
are the ones who get genho sons. Is the way
(14:42):
that they present it, right, So the people who get
visions are sort of honored for that, but not in
a way where you're like, Oh, everything's totally real, don't worry, right,
you know hm. And they teach techniques about how to,
for example, get the positive voices in your head to
fight back against the negative voices in your head, because
everyone has voices in their head, including you, because you're
listening to a podcast, and some of those voices you're
(15:04):
about to hear aren't our voices, but instead other voices,
and it's up to you to determine whether you think
they're positive or negative influences on your brain space. Here's
your test, and we're back. And so all the while
(15:30):
people are not cured, they're learning that they can participate
in their own corner of society and interact with mainstream
society as kind of a block. Take Kiyoshi, one of
the founding members, the guy Who's chased by pac Man.
As a kid and young adult, Kiyoshi was hospitalized for
seizures and hallucinations on a number of occasions. It's actually
(15:51):
interesting because he's like, he's more or less called schizophrenic,
but as he's pointed out, he's like, that wasn't really
the right diagnosis for what he had had psychiatric problems,
you know, right, And while he was at Red Cross Hospital,
he started helping out of the church. This is before
Bethel House is the kind of the founding of Bethel House. Right,
He would like, go and chop firewood and shit, right,
(16:12):
And when he was discharged, he moved into the church
with a few folks and then kept helping out, including
he was one of these first people packing seaweed. And
this didn't cure him. He wasn't like, oh now I
can totally get a regular job. He was still troubled.
This is according to his own sort of autobiography that
he wrote about Its actually, okay, there's a tangent. It's
not in my script. There's this whole interesting thing where
it's presented as sort of a cultural difference that psychiatric
(16:35):
treatment and therapy is much less talk therapy and much
less about the past, and so Bethel House is like
not very focused on let's talk about what happened in
the past, except as a way to study the patterns
of how we can move forward. And now I don't
remember why that was related, but I remember finding it
really interesting.
Speaker 2 (16:55):
Yeah.
Speaker 1 (16:56):
Yeah, And so he's he's still troubled. He picks fight,
he screams, he has seizures, he has all kinds of issues, right,
but he's able to get by a little bit. He's
able to live a slightly a life that suits him more.
He started teaching at Sunday School and leading some of
the prayer groups. And this is his first experience with
(17:16):
real responsibility in his life. And this is kind of
part of what leads into Bethel House existing. And he
found joy and meaning and community in his life and
was part of a project that has radically changed society.
Even though he still got so anxious that he picked
fights and flailed around and got seizures like decades later, right,
(17:38):
it ruined his romantic relationships. Every time he got serious
with somebody, the anxiety would kick in. He'd have to
check himself into the hospital for a few days. Early
antipsychotic medications gave people dry mouth and without saliva, his
teeth rotted out but he lived a really full and
I don't know anyway. I actually I couldn't find out.
I kept trying to find out whether he was alive
(17:59):
or dead. Then I didn't succeed.
Speaker 2 (18:01):
Oh okay.
Speaker 1 (18:03):
Like most members, he lives off of his very modest
income from the worker cooperatives and also from disability benefits
Japan has or again pad I don't know whatever had
a voluntary program that provided the elderly and disabled with
financial planning to make sure they aren't scammed, which is
cool as shit like because we like constantly try and
(18:23):
figure out, like, well, what do you do about the
fact that old people keep getting scammed out of their money?
Right right? Well, currently you could do financial planning with
them and help them take care of their money so
that no one can scam them out of it. It's cool.
Speaker 2 (18:37):
That's amazing.
Speaker 1 (18:39):
And there's a Bethel Bank that provides loans to its members. Wow.
They have a complicated relationship with the rest of the town.
It started off rocky and not everyone loves them still.
They are rather neuroatypical and often contentious people, but they
provide a lot for their community, including just like raw
(19:00):
tourist dollars like every town on some levels, like, well,
a lot of people come here because you I guess
we don't hate you that much. Really, thousands of people
come visit every year.
Speaker 2 (19:11):
They actually come to visit, like the organized methyl the organization.
Speaker 1 (19:15):
To come like to the shops and stuff, to come
to the workshops that they lead. And they talk about
we're gonna get to the self study thing, I keep
promising him, dangling self study in front of you.
Speaker 2 (19:26):
You really are. I love it.
Speaker 1 (19:27):
And so once self study as a concept starts spreading
around Japan, people want to go to where it started.
Speaker 2 (19:34):
Does it become like the new like yoga retreat?
Speaker 1 (19:38):
Well, it's funny is that they still like the housing
that they offer that Bethel House itself offers is like
really cheap, like ten dollars a night to sleep on
a futon in a room full of people.
Speaker 2 (19:50):
You know.
Speaker 1 (19:51):
Yeah, once again we value our lack of profits. These
people absolutely could turned into like a money cult, you know. Yeah,
and they just didn't. They didn't turn into a cult
and they didn't turn into like a scam. You know,
my friend, a social worker at a clubhouse. Person keep
(20:12):
talking about when for a while, for example, right, he
wanted to see like, how are these people doing this?
This is amazing work that's comparable to his own work.
And he would go in and sit on a sit
in on meetings. And they also and this brings hundreds
of Taurus all at once. They throw a Bethel Festival
every year. One of the main events at the Bethel Festival.
(20:33):
This is the part I probably should have led with
because it's so cool. Televised all across Japan is the
Hallucinations and Delusions Grand Prix.
Speaker 2 (20:42):
What does that mean?
Speaker 1 (20:44):
Members would tell the most outrageous true stories of their
own delusions and compete. Really, people would describe all the things,
and as they describe these things, everyone the audience and
storyteller alike would laugh at this. So it's not like
they're not being made fun of. There being like you
wouldn't believe what I thought was happening last week, you know, right,
(21:05):
And then the audience votes for the best story. But
because everything has to be the most wholesome version of
everything that's ever happened in the history of the world,
best is not defined by the funniest or the like wildest.
It's defined by the one that involved the most people,
Not like the delusion that became a communal delusion, but
(21:26):
that was like handled by the most people. That really
showed that everyone came together to help the person deal
with it.
Speaker 2 (21:34):
Oh. Interesting, So the person who needed the most help
essentially like the most like like resources to bring them back.
Speaker 1 (21:41):
Or like got the most help, you know. Like, Okay, Well,
the example the only example I've found so far, it's
in the documentary in the book, and I haven't found
another example in any of the articles because all the
articles that I've found mostly referenced the documentary in the book,
with other exceptions with some original research. But around the
Grand Prix, I didn't learn that much more. Right, There
was a man who was convinced that he saw a
(22:01):
UFO and he wanted to leave on it, and so
his fellow members right were like, yeah, yeah, no, there's
totally a UFO, but you actually need a UFO driver's
license or they're not going to let you on, so
you should get the driver's Like, we'll take you to
(22:22):
the Rokawa Space Agency where you can get your driver's license.
And they took him to the psychiatrist, the friendly one.
Speaker 2 (22:30):
Okay, I was gonna say, did they take them to
the hospital.
Speaker 1 (22:32):
Yeah, yeah, they took them to the hospital.
Speaker 2 (22:33):
Yeah yeah, okay, okay.
Speaker 1 (22:36):
But like a friendly hospital, you know, not just.
Speaker 2 (22:38):
Like yeah I knew what was going on, which is
an amazing connection to have a supportive, actual hospital with professionals.
That's got to be a key proponent to that as well.
Speaker 1 (22:50):
Yeah, there's something very there's something very like the balancing
of opposites to create a whole new interesting thing happening
where it's like, say, chiatric hospitals are part of Bethel, right,
and so is this like kind of mad pride vibe
where they're like hell yeah, Like people who are like
hearing stuff will wear like a pin that day being
(23:12):
like I'm hearing stuff today, you know, to like signal
to everyone like right, and they like they're like all
into honoring mister and missus voices what they'll call the
voices sometimes, right, you know. But also still the hospital's
part of it.
Speaker 2 (23:26):
Yeah, I mean they understand the seriousness and that medication
is necessary and that all of these things are a
regular part of treatment. I think that's a constant conversation
because also they're helping to destigmatize and they're in a
comfortable zone that they can be and not have to
hide things which makes things worse, or not feel like
(23:47):
they have to hide things, which can make symptoms way worse.
So that's an amazing concept. Yeah, yeah, no, I I
think it's so cool. Yeah for sure. Also having a
festival around it.
Speaker 1 (24:00):
Yeah, and then just because they keep doing everything that
I randomly think is cool. So Bethelhiuse itself doesn't spread, right,
there's not a Bethel house in different towns now, but
its ideas are spreading even if they aren't direct clones.
That there's no direct clones that I'm aware of. Their
ideas have this major impact. I think most listeners know well,
(24:23):
especially now because I mentioned it a moment ago last episode.
I have a particular interest in disaster preparedness and seeing
that space taken back from like weird right wingers who
want to build bunkers full of rice and beans. And
I heard you on your very own podcasts say that
you're starting to get into this too.
Speaker 2 (24:39):
I'm starting to really look at things and then look
at things differently and start researching. So I'm here for
all the suggestions.
Speaker 1 (24:45):
Yeah, the world is a change in place, and it
surely is. We should be ready. You'll probably be able
to guess. You know who literally taught all of Japan
how to do disaster preparedness, especially for disabled people. I'm
fraid to guess is fucking Bethel House? Was it? Yeah?
Speaker 2 (25:03):
They I was seeing something sinister. I'm not gonna lie.
Speaker 1 (25:05):
Wow okay, oh yeah yeah no no see but now
you're on cool people, THEYD cool stuff.
Speaker 2 (25:09):
No, it's positive again, this is my thing, okay yeah
yeah yeah.
Speaker 1 (25:13):
And like I don't think that like every they didn't
like design the curriculum for the entire country, except they
kind of did around disability.
Speaker 2 (25:22):
And preparedness, which is amazing.
Speaker 1 (25:24):
Yeah, Urukawa gets hit by earthquakes a lot, and Bethel
House works hard to make sure that their members are ready,
and they work with the rest of the community too,
in cooperation with the town's administration. They work with Mutual
Aid distribution after disaster, and all of their locations, all
of the group homes, all of the offices, all the
workplaces have evacuation manuals and they do trainings and drills,
(25:48):
making certain to include how to evacuate people who use
wheelchairs or have other like physical disabilities because for the
specific thing that they're generally doing right in this particular
case is preparing to get to high ground, which is
something that's particularly hard for people with mobility issues, and
that's what they focus on. Every location has disaster supplies
(26:11):
for crisis and then after they do these drills, they
get together and they analyze how well they did and
what needs improvement. Members with physical disabilities reported feeling like, Oh,
I won't be forgotten and abandoned in an emergency, and
I was able to reach higher ground in time. And
it was this sea change moment, right because a lot
(26:34):
of people with mobility issues have also told me this.
They're like, Oh, I'm just expecting to be abandoned. I
don't wanna get in anyone's way or whatever. And they're like, no,
we all got to safety because we tracked who had
what kind of mobility needs, and we took them into
account and we accommodated them and we did it right.
And so the Japanese National Rehabilitation Center for Persons with
(26:58):
Disabilities at their model and adopted the nationwide.
Speaker 2 (27:03):
That's amazing. Yeah, I think we need to look at
their model. I mean that's the little thing that's popped
up recently, obviously with all the crisis that have happened
around our country alone with the wildfires. I know, that's
a huge conversation and the disability community about the fact
that people have been left behind and so many people
have been forgotten, and it's because of the discrimination and
(27:26):
the lack of awareness in including this disabled people in
this conversation and preparing. I mean, to be fair, they
still didn't prepare for anyone. Let's just be real honest,
like totally. Yeah, it is bad all around, but the
lack of awareness and the fact that people they're invisible
havel to time. People with disabilities are invisible most of
(27:48):
the time, especially when it comes to crisis moments. That's
amazing and that is lovely to hear. That is amazing inspiring,
and that we need to learn what they did and
we need this manual.
Speaker 1 (28:01):
Yeah, desperately. Yeah, I am curious because I think that
it gets into specifics of like I read, I read
a transcript that it's going to be in the sources
for people want to look. I read it like a
I think it was a transcript of a talk given
by someone outside from Bethel speaking outside of Japan about
their disaster preparedness, and like you know, I think it
(28:21):
has to do with things like keeping track of each
other and knowing who has what needs and then making
sure that your plan includes those things. And yeah, making
sure that you have a plan at all, you know,
is like, right, the biggest step. And so when there's
no plan, people who are very able, you know, like
(28:41):
twenty five and workout all the time and have no
other problems, they are going to be do better than
everyone else, right, right, But if we, if we start
doing some preparedness around it, we can do so much better.
Speaker 2 (28:54):
Right. One of the things that they, I'm sure is
key is that recognizing everyone and allowing everyone have a
voice those meetings that it puts faces on these individuals
and you remember who they are personally, and that makes
a whole different conversation in what you're trying to do
and who and who you need to include in these conversations,
(29:15):
you know, And I think that's an amazing feed that
As an introvert myself, hearing about these meetings made me
tired totally just scaring about it. I was like, oh God,
another one and another one, Like I'm glad, but no,
I'm gonna be the one that's like just feed me.
I don't want to talk to you. If I'm having
(29:35):
a day that's full of visions, I got enough people
to talk to. We don't I just need you to
give me food. But that type of togetherness, that type
of accountability, that allowing them to work there through their
own situations brings a lot to the autonomy, as well
as being visible and given voices. But I think that
says a lot to that, which again there are ten steps,
(29:59):
one hundred steps, a thousand steps ahead of so many
other mental health treatment centers. So that's often again medication
only and or don't know how to allow autonomy for
people with disabilities totally.
Speaker 1 (30:13):
And like, you know, it's funny because when I was
reading about like oh everyone was locked up in their
home back in the day, and I'm like, wow, that
sounds terrible. And then I'm like, I mean there's a
like people with disabilities sort of deal with that anyway,
like like all kinds of disabilities like still and like today,
you know, people with mobility issues often don't. I mean
many people do. I'm not trying to make huge generalizations,
but there's like more of a struggle because the society
(30:36):
at large doesn't accommodate people with me. You know, mobility
needs and so like people are left out right, and
so it's like a group of people who all experience
that or some version of something right, you know, people
who deal with psychiatric issues or whatever are able to
then be like, well, of course we don't leave anyone behind,
(30:57):
even the people I can't stand. I yell at them
all the time that probably should, but they do, you know,
But of course we're gonna help get the wheelchair up
the hill, you know, or whatever.
Speaker 2 (31:04):
But we can work through it. At the Friday meeting
when I tell them it wasn't you, it was the
pac Man, Yeah, totally. Which again, like I said, I
envisioned a blue Why was it a blue pac Man
that I envisioned when you said pac Men to me,
I don't know.
Speaker 1 (31:16):
I mean, it's a yellow pac Man and the things.
Speaker 2 (31:18):
That I I know it's a yellow pac Man is yellow,
but in my head it was blue. Yeah, speaks to
my own conversations in my head. But I think it's
also an amazing like when we talk about other ring
people and having them being so unique and then making
it making them ostracized for that. But in this portion
(31:40):
and there's in this community, they love that and they
celebrate that, and then they celebrate that in a way
that all gives them a willingness to share a yeah,
and then a willingness to sit in it. Yeah, and
it allows them to sit in it. And I think
that's one of the biggest problems we have. Like you
continue to talk about how it's not a cure, we
know a lot of we have now finally come to
(32:00):
the point of understanding this is not a cure thing.
This is a treatment thing. And but that treatment does
not mean you have to make suppress everything and for
you to be the status quo. That's not what it
should be, because that's too much, that's too overwhelming, that's
too hard for a person who does who may not
have these diagnoses, who you would consider being on the
(32:22):
more on the.
Speaker 1 (32:24):
More neurotypical side of things.
Speaker 2 (32:25):
Yeah, thank you. I think a moment with that. But
this conversation of allowing them to be, which gives them
a lot more freedom to destigmatize again these types of diagnosis,
which is part of the problem. Yeah, rant done.
Speaker 1 (32:42):
No, No, I just I was thinking about because I
just get so excited about it. But you know what,
I also get excited about coming up with cynical ways
to transition to ads.
Speaker 2 (32:52):
Oh that okay, I'll give you that. That's not you're
just going to say ads. I'm like, don't lie to me.
Speaker 1 (32:56):
No, no, I'm done. I used my one liar earlier
and I claim it. Advertisers are good or whatever, but
some of them might be. I love when we have
the like ads that are like gopher walks in the forest.
You know what, I'm going to go free one go
for walks in the forest, Bring people you care about,
don't get lost, bring supplies, bring supplies, and then whatever
(33:17):
else is being advertised, and we're back. So I've been
holding out this whole time on self study.
Speaker 2 (33:32):
Yeah, I'm still waiting.
Speaker 1 (33:34):
Well, now it's time.
Speaker 2 (33:35):
Okay, tell me about it.
Speaker 1 (33:37):
There's the thing that they are doing that seems to
have the widest impact. Now, again, this is not creating
direct clones, but people looking at parts of their model
and being very inspired. And there's a word that comes
out of Bethelhouse from the early two thousands, tojisha canq
you Tojisha is an older part of that. It's the
older word out of that, and it's a word for
(33:59):
people who are marginalized in Japanese society. It's sort of
self identifier that's hard to translate directly, kind of what
you're saying earlier about people who are othered. You know,
this is a word for people who are othered, and
it's a self identification word for it. It comes out
of court proceedings as a legal term for someone who
is dealing with discrimination. In the nineteen seventies, disability activism
(34:22):
in Japan was picking up steam. People with physical disabilities
were able to say like, hey, we need accommodation. A
related movement of people with mental health issues started saying
us too, but had a harder time clarifying exactly what
was needed in terms of accommodation. And during this time, folks,
including sexual minorities started identifying as toojisha, And so it's
(34:44):
kind of a cool word that includes like all of
these different people who are struggling, even if it's like
entirely different. It's not just ability or disability. It's like
all these different groups of people. There's actually a genre
called tojisha manga right now, which is comics about mental
health issues. But thanks to Bethel House in the early
two thousands, there's a phrase or word or whatever it's
(35:06):
a typhonate it. I don't know I accounts as a word
or not. I don't know enough my own English grammar
to tell you tojisha kenk you. And this gets translated
to the science of the self or self supported research. Basically,
a schizophrenic member of Bethel set his own house on
fire in the early two thousands and then kept asking
(35:29):
himself and the therapists and stuff like why do I
keep doing shit like that? I don't really want to
set my house on fire, you know, And the social
worker responded that maybe he should begin to study himself seriously,
like start a serious study of the self, and the
idea spread around the Bethel community. As aon magazine put it, quote,
(35:52):
instead of being passive patients who felt they needed to
keep their heads down and be ashamed for acting differently,
they could now become active researchers of their own ailments.
So jisha kenk allowed these people to deny labels such
as victim, patient, or minority and reclaim their agency. And
this is similar in some respects, but goes beyond when
(36:15):
I learned in cognitive behavioral therapy, which if I'm do
you every want to hear me shout out a thing
that did me a lot of good in my life.
It was cognitive behavioral therapy. It doesn't work for everybody.
That's a kind of whole thing about it, but sure
helped me with anxiety. And a study of the self
sort of is a weird part of that, and it's
based a little bit on that, but it doesn't end
(36:36):
at the self. These self studies are then shared in
a community to keep quoting aon about it quote. At
Bethel House, members found it liberating that they could define
themselves as producers of a new form of knowledge, just
like the doctors and scientists who diagnosed and studied them
in hospital. Wards. The experiential knowledge of Bethel members now
(36:59):
forms the basis of an open and shared public domain
of collective knowledge about mental health, one distributed through books,
newspaper articles, documentaries, and social media. And so it's a
sort of citizen science around mental health. By sharing their
experiences and findings, they're able to then look around the
(37:20):
room and be like, how generalizable is this thing that
I'm experiencing? And I feel this all the time. With writing,
I will talk about some experience or feeling I've had
that feels like real dang unique to me, right, And
I'm like, well, no one's going to resonate with this
weird shit, and then find out that people do.
Speaker 2 (37:40):
Mm hm.
Speaker 1 (37:42):
So Jisha kenk you started spreading. And this is when
more of the tourists started coming to Bethelhouse because they
were like, this idea has meant so much to us.
These self studying people started giving talks around the country
and the world about what they'd learned, and this is
also what led to the hallucination and delusion Grand Prix mm.
(38:03):
And it's no longer a Bethel House thing or just
a Bethel House thing. In twenty fifteen, it started up
at the Research Center for Advanced Science and Technology at
the University of Tokyo, who have further sort of systematized it,
developing ways to run the knowledge produced by this self
study through tests basically and kind of create this whole
(38:25):
alternative parallel science structure, but not one that's just like
based on vibes and feelings, like it's like, actually, it's
like a rigorous study of the self and then applying
it to be like it's the like who else feels
the way that I do? But in a like But
then you take notes then you like do studies on it,
(38:45):
you know, And it started largely by this schizophrenic group,
but it is being used by people with autism, people
with addiction, kids with learning disabilities, people with physical disabilities,
people with mental disabilities, all kinds of people. And then
because it's the study of outsiders, right, they've even worked
(39:07):
with people who are outsiders for being incredibly lonely in
competitive fields, Like this has been used by an Olympic
athlete and an astronaut, you know, like because you're you're
isolated if you have those jobs, right, Yeah, so like
the idea that the isolation is the thing. So then
you have people who are isolated by even being at
(39:28):
the top. Right, I got really excited about this. How
did this compare to what you're expecting out of Yeah, go.
Speaker 2 (39:37):
Ahead, I'm wondering, like because it does like in a
way of like being a social worker myself and being
in that world. When I think about we would always
laugh about the fact that all social workers diagnose themselves, Yeah,
in such a harsh manner. And then like every time
they find out a new diagnosis or a new type
(39:57):
of symptom, like yeah, that could be me. Oh god,
I am like how often we will do that for
ourselves and then have to like regroup and be like wait, wait, wait, yeah,
but does this mean this? So like it makes me
kind of laugh in that level of like it's really
especially for people who are on that level of studying
this helping in these industries or fields and then coming
(40:19):
and just seeing that that you're just diagnosing or you're
just analyzing every damn person and yourself and you're analyzing
yourself in that situation. For me, I analyze so much
of like, oh my god, I think I said this
wrong and this word is this this like so in
my head. So in my head it is like have
I always been doing this? And I just don't come
(40:40):
with a solution like right for me, I need to
go to this place, I think.
Speaker 1 (40:48):
But then if you're doing self study in a like
rigorous way, you would know the answer of have I
done this before?
Speaker 2 (40:54):
Right?
Speaker 1 (40:55):
You would be able to say, like, you know, I
think about like I use cognitive behavioral therapy to lessen
anxiety attacks that I was having that were ruining my life. Yeah,
And one of the ways that I would do that
is I would literally track each ebb and flow of
panic as it was happening, and so I knew going
(41:17):
into a panic attack that I could be like, well,
if it starts at about an eight on a scale
of one to ten, I'm in for about a thirty
minute ride, right, you know, or actually at a NATO
was probably starting out about two hour ride.
Speaker 2 (41:29):
But like, let's go say that's a high number.
Speaker 1 (41:31):
You know, if I come in at like a six,
I'm in for like a thirty minute ride, you know,
And I know it's going to drop down to a four,
and then it's going to go up to a seven,
and then it's going to go back to a three.
I like you track it. Yeah, so you could say
to yourself, like, well, how often do I come home
from social situations completely convinced that everyone hates me? Right?
(41:51):
And then you'd even be able to be like, upon
further study, it turns out that everyone does not hate me,
you know.
Speaker 2 (41:57):
Just these three people?
Speaker 1 (41:58):
Yeah exactly, Yeah, like the person I actually offended. Actually,
the thing that always happens to me is I will
leave social situations and be like, oh, I really screwed
that up. Everyone hates me, and I'll like call to
like apologize to people. That's something I said, and they'll
be like, no, I'm not mad about that. I'm kind
of bad about this other thing.
Speaker 2 (42:17):
But this other thing that you did that was real bad.
Speaker 1 (42:20):
Yeah, why do you leave the dishes in the sink?
Everyone's mad at you? You know, I'm like, ah, you know.
Speaker 2 (42:24):
Yeah, No, I think it's very interesting. Again, this gives
a lot of control to where it's not you as
the patient, you as the person that needs to be
solved and fixed, as opposed to you recognizing your patterns
and just finding intervention plans or or not even intervention
plans necessarily, but just how you can best maintain that situation. Yeah,
(42:48):
and that's very spot on. I mean, that's the fact
that they did this this early, that early on is
significant obviously, Like that's why it's being studied because it
is this a thing that's again, but they're all all
of their phrases are so like newer to me, Like
that is so becoming more accepted today, that whole level
of like just care for yourself, you know it just okay,
(43:11):
live in thing that is now, it's not a big deal.
You hear those voices, Honor those voices, you know, as
opposed to suppress them. Deny them and pretend like everything's okay,
which would have been like fifteen twenty years ago to
see that that's they were obviously leagues ahead, where it
does show a level of humanity and understanding disability, which
(43:34):
is again a big portion of what's missing in all
kinds of treatment.
Speaker 1 (43:38):
No totally, and like by being their own experts, and
you're talking about how like all social workers are self diagnosing,
it's kind of like, like all my therapist friends are
the people who are like the least hinged in their
sheer therapist friends who are listening to this currently, I
love you, You're great. The people who are like therapists
neurospicy in their own lives, you know, and like often
(44:01):
need to hear their own advice. You know. Yep, But
it kind of like makes sense, right, It like makes
sense that people who are like care about this stuff
might have some relationship to it, whether they're like fully
in it or not. And then also the fact that
because they do go beyond just like these are my
own patterns, they then say, well, now we're creating a
(44:21):
body of work together. So I don't just say, oh,
I know what my panic attacks are, Like I can
go and be like why I can't right now, but
like you could theoretically be like, what are other people's
panic attacks? Like right, you know we have this whole
body of work with charts and graphs of like, right,
you know what can cause this or whatever?
Speaker 2 (44:41):
Anyway, No, yeah, it is. It lays a lot of groundwork,
and especially when you again talk about interventions and treatments.
Nothing is one size fit all, so would this type
of conversation with everybody doing the self actualization type of thing.
But it does help he give unique experiences and unique
(45:03):
pinpoints and give different options of treatment. When you see
these types of diverse reactions and conversations, because again, like
the original pac Man dude, I've already forgotten his name, apologies,
Blue pac Man. In my head, it's okay Kiyoshi Kyoshi,
like his experience is very different, and he was able
to do one way to thrive, not completely to the
(45:25):
point that he wanted to, I'm sure to a certain
degree about having relationships and doing all of that, but
he was able to thrive and fill find a community
like that type of level and being able to do
that individually and then having that collection as data for
others who are in similar situations. That is phenomenal and
it takes a lot of research and money in time.
Speaker 1 (45:47):
Yeah, well it did it with that much money. But yeah,
they but they had to have resources. They had to
build their whole own infrastructure to support it for sure.
And it really it gets at the fact that like
sometimes a group of people who just get together to
be like, well, I don't think society is very well
set up for us. We should do something about it. Yeah,
(46:09):
can have impacts that are so huge. Again, even Bethel
House hasn't replicated. Yeah, but some of the things that
they hundred of them got together and figured out starting
with the four of them or whatever, you know, like
have potentially changed the way that science can work, you know,
(46:29):
like have this like huge impact. And it it's the
kind of thing that before I started this podcast, like
you know, there's that Margaret Meade quote. It's like, oh,
never be convinced that the small group of people can't
change the world. It's the only thing that ever has
or whatever, right, And that's always like the quote is
like overplayed, you know, because it's like usually when ten
people get together to completely change the world, unless they're billionaires,
(46:51):
they which cause they're going to make it worse. Right,
You're not going to change the whole world if you
set out to change the whole world, but when you
set out to be like this local thing that we
want to accomplish, and then accomplish it in a way
where we can talk to people about how we accomplished
it to see if other people can do other things.
(47:11):
You know. Yeah, well, okay, to go back to my script.
So this framework, the citizen science kind of thing that
they're doing, it's not one hundred percent unique. It is comparable,
for example, to the citizen science advocated for by act Up,
who we did an episode on, which is that Radical
AIDS group. People living with or dying from AIDS became
(47:37):
some of the world's most respected and impactful experts on
their own ailments because no one else was doing it right,
and even if they had to break a lot of
laws in order to prove that they knew something about
their own problems. And I want to give Kiyoshi, the
founding member we were just talking about, he gets the
(47:58):
final word in the documentary Bethel, and I think it's
worth closing out with here too. He said, quote, I
want viewers to know that people with psychiatric disabilities aren't abnormal.
If you have psychiatric disabilities or are ill right now,
please live life with all your energy. Living life is important.
Life is something that God has given us. And even
(48:20):
if you are ill right now, please live life with
all your energy. Just because you are ill is no
reason to close your soul to the outside world. People
with psychiatric disabilities or people with physical disabilities, for people
who are about to begin life, or people who are
at the end of their life, I think the most
important thing is to live now. It is really like that.
(48:41):
I really like even the whether you're starting or ending
your life. Like one of the things that I didn't
end up writing into the script, one of their little sayings,
was something like I don't mean to be diminutive with
their little sayings, but you know, they have a bunch
of little pithy sayings, right, And one of them is
like celebrate a life and decline or something like that.
(49:01):
And at first I didn't understand it, but it was
explained later more that it's like you need to accept
that sometimes most of the time, most of your life,
you're past your peak, right, You're past your like physical
and cognitive, you know, whatever or like things get worse
(49:22):
and it's okay, Like that is a natural cycle of life,
is that you like things get harder and eventually they're
over right, but like that's all right, and you can
do amazing stuff and like live your best life wherever
you're at on that scale anyway.
Speaker 2 (49:42):
No, I mean that absolutely makes sense. I think about
a creator, a disabled creator who talks about the fact
that being able bodied it's actually very temporary.
Speaker 1 (49:52):
Oh yes, whether it's age or.
Speaker 2 (49:54):
Like you know, age or or accidents or whatever. Yeah,
you will be a part of that.
Speaker 1 (49:59):
Yeah.
Speaker 2 (49:59):
Community. Now you just have to acknowledge that everyone has
the right whenever you know, whoever they may be the
disabilities and or whether it's invisible or not, that to
be treated as human kindness and like to be prepared
that you still have to live life like this is.
It shouldn't have to be like the tragic inspiring tales
(50:22):
of those people who suddenly get into an accident can't
walk in so they choose to die like that. That's
not the story that needs to be celebrated necessarily, Like
that's kind of like, oh, yeah, why are we talking
like that? But to live to age, to get to
that point as a privilege. The fact that you have
lived that long where you've gotten to this point and
being able to celebrate that is is a part of
(50:44):
that journey. I say this as my back is killing me.
Speaker 1 (50:49):
I think anyone who's like done a little bit of
aging is like on some level a where like when
you hear that quote, yeah, the idea that you know,
being able bodied is temporary, Like right, that's like, oh yeah, no,
I I can see how that's true, and it makes
it you know.
Speaker 2 (51:04):
Like whether it's your knee, yeah, my knees are popping.
But yeah, this is an amazing story and everything from
like the fact that again they've created their own community,
which again we see throughout history, if something's not there already,
people are like, well I'll create that, I'll do it.
And those people are phenomenal because without even trying, they've
(51:26):
done something incredible that people look at and be like
oh wow, okay and learn from and then they go
into being able to provide a community that has a
lot of life lessons. I need those sayings on a
poster with Kittie on it, right, those inspirational ones.
Speaker 1 (51:44):
Only it would be like it's okay if you fall
off the branch. It wouldn't say hang in there and
be like right, it'd be like hold on, why you can?
I guess good luck, enjoy that moment, look at the view. Yeah,
it happens to us.
Speaker 2 (51:55):
All happens to us. All.
Speaker 1 (51:58):
Yeah, well, I guess at that. The equivalent of that
is the meme where it's a bunch of raccoons and
it says, uh, death is coming, eat trash, be free free.
Speaker 2 (52:09):
That's metal sounding.
Speaker 1 (52:11):
Yeah, that might be more of a meme in my
community than the broader community.
Speaker 2 (52:15):
I like it. I love raccoons.
Speaker 1 (52:17):
I need that. Yeah. Well, thanks for listening to me
talking about Batthelhouse. And if people want to hear you
talk about stuff, where can they do it?
Speaker 2 (52:26):
You could come listen on stuff mom never told you where.
We talk about a lot of different things. We talk
about women in the apocalypse like you were talking about,
We talk about women in religion. We actually talked about
why soup is feminine? Apparently. Oh really did you know that?
Speaker 1 (52:40):
I love soup? I do do.
Speaker 2 (52:41):
I've made four different ones this week.
Speaker 1 (52:43):
Amazing good.
Speaker 2 (52:45):
It's soup weather, y'all, it really is. So. Yeah, you
can hear different conversations about that you can hear old
conversations from old hosts talking about like why uh pockets
were not given to women and how it is with
such anistic Yeah, you know, all the good things. We
have a book that's been out for two years, but
if you want to go read it, it has a lot
of other information as well. And yeah, you can find
(53:06):
me on Blue Sky McVeigh sam or on Instagram.
Speaker 1 (53:11):
I think that's it awesome if you want to hear
what I write, I guess read what I write would
be the proper verb to use. I have a substack
It's Marter Kildro dot substack dot com and every week
I post an essay about stuff and holding on to
hope or whatever, letting yourself fall off the branch I
don't know, and most of the big important essays on
(53:34):
that are free. And then every other week I do
a more personal essay that's just for paid subscribers, but
don't if I think it's like super socially useful, I
will make it free so you can check that out.
You can go look up The Immortal Choir Holds every
Voice on Kickstarter. It'll be launched in March of twenty
twenty five. If you're listening to this far in the future,
(53:54):
just go buy the book somewhere or scavenge one from
what's left of a library in the apocalypse. I don't
know if you're listening to like twenty twenty seven, that's
going to be your only option. But you know, twenty
twenty five, twenty twenty six, you probably still have a
regular commerce available to you. And yeah, we kick starting that.
It's the third book in the Daniel Kaine series. And
you can follow me on all the various social media's,
(54:15):
except that's not true, not all of them, Instagram and
Blue Sky. I guess I'm technically still on X but
I don't. I hate it, so all right bye everyone.
Speaker 2 (54:26):
Bye.
Speaker 1 (54:32):
Cool People Who Did Cool Stuff is a production of
cool Zone Media.
Speaker 2 (54:36):
For more podcasts on cool Zone Media, visit our website
Foolzonemedia dot com, or check us out on the iHeartRadio app,
Apple Podcasts, or wherever you get your podcasts.
Host
Margaret Killjoy
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