Video summary
The video introduces Brain Club, an educational initiative by All Brains Belong dedicated to fostering neuroinclusive culture and authentic systems change. Hosted by Mel Hower, the session revisits a conversation with Dr. Winnie Luby to explore how communities can shift broader awareness regarding neurodiversity without waiting for top-down policy mandates. The core argument presented is that meaningful change originates from the ground up, driven by people who directly experience systemic barriers rather than being dictated to by distant policymakers. This approach emphasizes co-creation, where solutions are developed collaboratively with those closest to the problem, ensuring that strategies like universal design and queuing safety are implemented based on real-time feedback and lived experience.
A significant portion of the discussion focuses on the psychological toll of navigating broken systems, particularly how these environments force individuals into survival responses that deplete their energy and inhibit authentic expression. The speakers share personal anecdotes illustrating the exhaustion required to suppress one's true self to fit arbitrary norms, such as standing when a chair is available or adhering to rigid social scripts during interactions. They argue that when people are forced to constantly monitor their behavior and apologize preemptively to avoid harm, they enter a state of fawning or shutdown, which prevents them from being effective in their roles. The consensus is that safety and the ability to be one's authentic self are prerequisites for genuine participation and effectiveness, whether in healthcare, workplaces, or schools.
The dialogue also highlights the concept of universal design as a practical strategy for replicating these inclusive models within traditional systems. By making accommodations like seating options available to everyone rather than requesting them individually, organizations can remove the burden from individuals to prove their need for support. The speakers discuss how normalizing these needs benefits everyone and reduces the stigma associated with asking for help. Furthermore, the conversation touches on the importance of trusting one's nervous system reactions as valid data about environmental safety, shifting the narrative from internal shame to external systemic failure. This reframing helps individuals understand that their stress responses are not personal deficits but signals that their environment is not yet designed for them.
In conclusion, the video advocates for a cultural shift where communities take ownership of creating safe spaces rather than waiting for permission or structural overhaul from above. The speakers encourage viewers to recognize that what feels easy for some is not necessarily easy for all, and that validating these differences is essential for true inclusion. They promote the idea of starting small by trying new things together and modeling authentic behavior, which can ripple out to influence others. The session ends with an invitation for the community to continue this work through upcoming hybrid events, reinforcing the belief that collective action by people experiencing the problems daily is the most effective path toward lasting systems change.
Read the full video transcript
All right. Um, so welcome everybody. I'm
Mel Hower. You they pronouns, executive
director of All Brains Belong. Welcome
to Brain Club. Today we'll be talking
about authentic systems change. Um, and
we are going to be revisiting a
conversation with Dr. Winnie Luby.
Before we begin, closed captions are on.
You just have to turn them on if you'd
like to see them. Depending on your
version of Zoom, you might see the live
transcript closed captioning icon. If
not, look for the more dot dot dot and
choose show subtitles. You can also do
the same and choose u hide subtitles if
you want to turn them off.
Um before we begin, thank you as always
to our brain club supporters who make it
possible for us to be here with you. Um
providing education about neurodiversity
and neuroincclusion. If you're new to
Brain Club, welcome. Um we are here at
All Brains Belong supporting the health
and belonging of people with all types
of brains and we do that in lots of
different ways including Brain Club.
Really glad you're all here being part
of what we're doing. Brain Club is our
education program where we demonstrate
our approach to neuroincclusive culture
for shifting broader community awareness
of the issues of concern and importance
to our community. It's also a space
where we broker alliances with other
communities who come to learn. Um and
hopefully uh we promote new ways of
thinking and being and we all take this
forth into the rest of our lives and
that's how culture change happens and
that's exactly the topic of today's
break club.
Everyone's welcome here at brain club.
Neurody divergent people and those who
support them. People who are exploring
their neuro identity and anyone with any
type of brain who wants to learn about
neuroincclusive culture. There are
multiple right ways to participate here.
You can have your video on or off. Even
if it's on, we don't expect anything of
you. Feel free to walk around or move or
fidget or stim or eat or take breaks or
anything else that needs doing. Um we
will have time for discussion after we
watch um our interview with Dr. Lubie.
Um and during during that time you can
use mouth words or the chat. Um but you
also don't need to. Observation is a
valid form of participation.
And in addition to affirming all aspects
of identity, um this is a program
oriented around the collective
community. Really glad you're all here.
Some of the things that you will notice
here at Brain Club, this is for
education purposes only. This is not for
medical or mental health advice. It's
also not a support group or a place for
audience members to discuss one's own
trauma or make individualized requests.
Um, you will hear some systemic
critiques today um of broken systems,
but it's about systems. We criticize
systems, not people. So, we invite you
to listen, to learn, to observe um what
a neuro inclusive space might look like.
Maybe pick up some new words and
concepts and think about how what you
hear connects to your life.
If it's your first time at Brain Club,
keep coming back. U might take a couple
times to get uh get the lay of the land
and how we facilitate it. And Lizz's
going to put some frequently asked
questions in the chat. Um during the
interview with Dr. Lubie, we will
automatically mute everyone um so that
there are no auditory distractions.
All right. So, um big announcement.
Pre-orders are available for All Brains
Belong's new book, A Failure of
Imagination: How the Healthcare System
Fails Neurody Divergent People and What
We're Doing Instead. Um and um what what
you'll see um is that the theme of the
month is a failure of imagination where
we're going to be looking at systems
change and some of the things that we in
this community have created together and
what we've seen um and uh go through
strategies of replicating um all or part
of of of what we do here. Um, Lizzy's
going to put a link in the chat if you
want to read about the book and maybe
even pre-order it or you can also ask
your local library or bookstore um to
acquire it. It will come out November
6th.
What you'll see in this book um it's
oriented as such. So why and how we
created all brains belong together with
our community um and what we do here
both in health care and outside of
healthcare in workplaces and um in uh
establishing a neuroincclusive community
culture and then a stepbystep to how you
might um replicate um some of some of
what you read about and improve the
spaces that folks are in now. So um
hopefully something for everyone. Um,
what we're hoping you take away is that
we don't need to wait for top-down
systems change. That is policy change
from the top down by policy makers.
There are things we can do right now
together. Um, and that's what tonight's
spring club's going to be about. Um,
strategies for centering those closest
to the problem with the idea that
solutions come from people who get it,
who are experiencing the problems.
You'll read a lot about what universal
design looks like in healthcare and
workplaces and community spaces and
strategies for queuing safety and
facilitating culture.
So, at Brain Club this month, we're
going to um be be looking at some of
these behind-the-scen concepts and
starting with the big picture of systems
change from the ground up, meaning
people living um and experiencing the
problems, deciding to do something
different together, coming together and
just trying things. And then we're gonna
be talking about this tonight. Um, also
next week we have a special hybrid brain
club. This is a community storytelling
experience. Um, we'll be gathering u for
for anybody local to central Vermont.
We're going to be gathering outdoors on
the lawn of Kellogg Hubard Library in
Montpillar. Um, and then you can also
access as always brain club via Zoom as
you are today at the same link. Um and
so we'll be uh joined by all brains
belong community members both in person
and virtually sharing reflections on
what [clears throat] we've learned
together over the past 5 years. Um if
you've been um part part of this
experience um and you want to share what
what uh that's been like for you um we'd
love love to include your perspective.
Um Lizzie, can you put your email
address in the chat? If anybody if any
brain club regulars want to want to be
part of that and you haven't let us know
already, uh, feel free to shoot um,
Lizzie an email. Oh, that's great,
Brian. That's awesome. So, shoot Lizzie
an email or even just send a private
chat message tonight while you're here
and let us know that you want to
participate.
You can um, use mouthwords. Um, you can
write something. You can write something
for someone else to read. Um, you can
um, communicate um, via a device. You
can show art, you can share music, you
can share um really any way that you
want to participate.
So, we hope to see you either in person
or virtually next Tuesday. Um but uh for
now, we're going to spend the next um a
little bit over 15 minutes um and then
we'll have some time for discussion. Um
so, uh Dr. Winnie Lubie is a program
coordinator um of of the disability
studies certificate program at the
University of Vermont and program
coordinator for the UVM center on
disability and community inclusion. Um
she is also a member of our board of
directors at Albrins belong um and has
been so uh for almost the whole time
here. Um uh Dr. Luby um has a PhD in
educational leadership and polish stud
and policy studies with a concentration
in special education. Um uh and her
professional interests are on
interdisciplinary collaboration,
disability studies, early childhood
special education, technology, and
family school partnerships.
And so with that, um I'm going to play
our video. Um, you are welcome as you
listen, you're welcome to share anything
you're taking away um in the chat. Um,
and then we'll have time for some
discussion um afterwards.
I'm going to stop.
I actually think that I can just play
this cuz I actually shared sound for a
change.
Can make this bigger. Okay.
So, so the the idea of, you know,
systems change and we've like talked,
you know, you and I have talked about
systems change before and like how
that's like an important part of what we
want all brain belong to be doing like.
Can you can you say like what what that
what system change like that, you know,
mean means to you or could could mean to
you?
>> Yeah. Well, I think as we were talking
about um ideas and [clears throat]
energy and drive comes from the people
up rather than um you know this top down
where it's being dictated to you what
you should be doing or not doing or how
you should be doing it. Um and the
co-creation piece I think is is part of
that. um you know like uh if I think
about uh I always think about like say
public services like um like uh food
stamps or section 8 or social security
or those kind of things like those
systems would work so much better if
they actually paid attention to how
people are using it and the barriers
that they're facing with it right if
they were actually acting on the things
that aren't working. it would be so much
easier.
>> I could not agree more. And like it's
actually not that hard
to ask people, you know, even like and
we and and but I think it's a lens. It's
a lens of,
you know, I really I want to know I want
real time feedback on what I'm doing so
that I can make little tinkers and
adjustments. Um, I wonder if in like a
big system you just realized that you
couldn't even make changes, so why
bother asking feedback? I don't know. I
don't know. What do you just What do you
think about that?
>> Well, I think about um the importance of
having folks with lived experience in
those positions that can make change at
that level because of, you know,
otherwise you're kind of talking to the
wall. like you have a few people who
kind of get it and they're sympathetic,
but um if you have people in positions
of power who can actually
lead the way and model like this is a
different way to do it, I think that's
the way to have the change really. So
like having um you're working with
people about employment, I think that's
a really powerful model for sure because
then those people can model for other
people, right? That they can see that it
can be done. Um, [clears throat] like I
had a I I got asked to speak at a class
few months ago and I was very open about
my own like neurological challenges and
my family and da but I also talked about
how um I felt like I was in a very
privileged place to be able to have a
job that really valued all of those
parts of me, right? And I had feedback
from the students. They go, "Wow, it is
possible to like actually be myself
someplace and be
and be valued and have work and take
care of myself. Like I don't have to
bend myself into these knots that aren't
realistic or I don't have to feel bad
that I can't make my brain do something
different than if I [clears throat] just
do. Um and so I think that's where those
those changes happen, right? Like those
those small moments where you can
actually, you know, you never know how
you're changing somebody's life just by
talking about something, you know,
>> right? Um because I think that it's some
at least for me sometimes I don't even
really I don't have language to
understand my experience until I've
heard someone else name it and I'm like
oh I would never have come up with those
words but that is the exact thing that
goes on in my head. Wow. Whether I
whether I hear it or I read it or or
something.
>> Yeah. Yeah. Exactly. Exactly. That's why
it's just so I think it's important that
even though everybody can't be happy
with everything, I think it's still
important to have the platform in the in
opening there. Yeah. You're not going to
be able to to to please everybody.
>> Right.
>> Right. Because if you're pleasing
everyone, the only way to really do that
is if you are if you're serving a group
of people who has homogeneous goals. And
>> you know there might be
some some reason for that if that's true
and it's okay to have a homogeneous goal
like you know a shared goal like a
shared vision like you know um I believe
that I want to come to a you know a
space where I can be my true self like
we can agree on that goal um but but you
know it's more big picture as opposed to
I want this program to look like this.
Mhm. [clears throat]
Yeah.
>> Yeah.
Well, I think I think it's great that
you're still open to hearing all of that
even if some of those things people want
aren't practical or they're hard to deal
with or whatever. I think that you're
providing the platform is the important
part. Right.
We are so
proud of the model of cocreating
programs with the people we're serving
and we're so like we're just so into
that, you know, and it's like really
important to us, right? And then there's
this line there's this balance between
like you know some centralization and
some structure um and some you know
balancing the organization's needs with
the needs of the people in it. It's the
conflicting access needs.
>> I'm remembering when um my younger
daughter started preschool
um and she'd just been diagnosed with
autism. She's only four. Her language is
coming. Had lots of angry outbursts,
right? And so on the one hand, we want
her to be able to express herself and
tell us what's going on. On the other,
she had to learn how to operate in this
system where it wasn't okay to do that.
And it's still tricky, right? She's 18
now, and it's still tricky. Like, it's
okay to be yourself. And in this
situation, you have to [laughter]
put a lid on it, you know? Um, yeah. And
that's hard with people you don't know.
I mean,
>> I have always like and maybe this is
just my PDA, but um like I've always
just found most systems unsafe. Like
they just like you just like just even
as a little kid being like this makes no
sense. This is arbitrary. This is not,
you know, this is not open to feedback.
You know, I remember even being like a
middle schooler being like, you know,
why why don't you ask the students why,
you know? Anyway, um it it it it just
always felt like
not that systems are like really maybe I
could say this, most systems are really
designed to to perpetuate systems.
they're not really like, you know, so it
just it it has always felt intuitive to
me that starting over and starting
something new um that wasn't part of a
system
um would be more effective at least
faster a lot at least faster to get some
sort of impact to happen. Um, and maybe
it's maybe it's just my brain that I
delayed gratification is really hard for
me. I want the thing now. I want it
right now. Not because I'm gonna get
distracted. Um, but because like I just
it's just it's other words just too
hard. Um, anyway. Um but but I and and
and and I think at all brains belong
it's it's all these all these little all
these little things that would be really
difficult to do in let's say a
traditional medical system.
Um, but I think that
having the opportunity to share what
we're doing, um, has been really cool
because some of it actually is
reproducible
in traditional systems. But at least to
get into the weeds of like, well, this
is what our menu looks like, like this
is what universal design for medical
care looks like, and and you know, this
is this is this is actually doable. you
can just really anyway. Um, but because
I I I think like you're saying the
student who for the first time hears
that like it's a thing that you can be a
professional with a job and like not be
contorting yourself in 50,000 ways. Like
I think professionals also need to hear
that you don't have to be tortured by
the system you work in.
>> Yeah, I think so. I think it's a very um
powerful kind of I don't know if social
justice is the right word, but I think
the more people can be themselves in
those situations, the more effective
they're going to be. um the more
authentic it feels to interact with them
when they're being their whole selves
and they're not holding back something
because they don't think, you know,
these other folks will want to hear it,
but they can actually speak their minds
a little like um yeah, like I I I really
I really think
I think the more this is kind of like
cheesy and hippie dippy, but I feel like
if everybody felt empowered to be their
true selves,
and you're not hiring anybody. You're
just being yourself, right? And you pick
the kind of job you want. You have the
kind of family that you want. Um the
friendships that you want, everybody
happy, right?
We weren't like kind of feeling pressure
to clamp down some pieces of ourselves,
right? Um
>> totally. And think about how much like
cognitive effort is required to like
clamp down and suppress like all that.
Well, you know, it's funny you say that.
I don't maybe you know the story. I
don't know if you know the story um the
story of how Kid Connections got
founded. Do you know that story?
>> Oh.
>> Oh my gosh, it's the best. Okay, so um
[clears throat] a a then eight-year-old
on the Junior Advisory Board. Um we were
like in a backyard. Um and um I I said,
you know, we've been really thinking
about how do we how do we help kids feel
like they belong? Do you have any
thoughts about that? And this this swing
of love, he says, you let us do what we
love.
M
>> what do you what do you what do you mean
well if I'm doing what I love and that
kid's doing what they love like we're
going to feel like we belong
>> nice
>> so that's that was kid connections like
that I mean that is system changed from
the ground up this is like a sweet
little love with a sweet little idea
that changes the world you know we've
got 140 sweet little loves who now have
friends like
>> um and you know did did school solve
that problem no um right so so it's uh
it sometimes just doesn't have to be so
complicated.
>> I agree. I agree. Definitely.
Yeah, that's that's a great story. I'm
glad you told me that. [laughter]
>> Awesome.
>> Well, I I I think in my head um part of
why I'm really enjoying being a part of
all this this journey is because the the
kernel of what you're doing feels so
common sense, right? It's just so easy
and is if you're able to pass on the
word as much as possible, you know, I
can picture like, you know, 10 years
from now, but at least four or five
other practices like yours would be
amazing, right? Um [clears throat]
all over the, you know, all over the
country or wherever. Like I think that
would be really really great. Really
great. Yeah. And then for people to even
know that it exists, they're like, "Oh,
I can I can actually seek out practices
like that. I don't have to stay with
this thing that I don't feel good
about."
Yeah.
>> Yeah. Thank you for saying that, right?
Because I think like so many people,
they have they've never like even in the
healthc care space, they've never had a
healthcare experience that feels safe
and comfortable. They've never had a job
where they could show up as their true
self. They never had that. So they don't
know that that's possible. So you see it
hopefully you you see it because you're
experiencing it. But even if you don't,
you know, yeah, I hope I hope that that
does, you know, does help adapt people's
expectations of what they should be
expecting and demanding
um from the their environments.
>> Yeah. Yeah. That's amazing. Yeah. What
they should demand and expect, right?
like it's reasonable to expect that
you're going to feel safe when you go to
the doctor or any of those things. Yeah.
>> Yeah.
>> I I would say like as a patient um like
I maybe about a year ago I went in I
went in to get dental care and um there
was like so much COVID going on like
like so many people had CO in our
practice and I went in and like nobody
was wearing masks um and it felt really
unsafe and then it's an open air thing.
I'm going to I'll edit all this out, but
but I'm you know this open night hurt
thing and the person in the stall next
to me coughed
and I flipped out and I walked out and I
I it was very difficult for me to get
mouth words out but I was I was all I
was able to say is like it's not safe
here and I walked out. You know, I would
never have been able to do that without
my experience of transformation through
the EB village because I am surrounded
by people who think about safety and
think about like I have an internal body
signal that sends me a like sends me a
clue that like something in my
environment is not a fit for my access
needs. Like I didn't have that lens
before this.
Oh, wow. That's a really good Yeah,
that's a really good example. That's
good. Yeah. I I didn't feel like I could
talk about myself in any kind of deep
way until [clears throat] I got involved
with ABB really.
I mean, it just like it spoke to me
immediately as something that like, you
know what, Winnie, you're going to be
50some. Some point you're going to need
to be authentic with people. Why not
start right now?
that part of your journey. That's
amazing.
>> Yeah, absolutely. Absolutely.
>> You know, it's so interesting because
it's it it is like this grand social
experiment of like, hey, I'm going to
show up and try to be authentic. Um, you
want to do it with me? I don't really
know what that looks like. I've never
really had it before, but you know,
let's do it. And I I think there's so
many people who
are are are are hungry for such a thing.
>> So too. I think so too. And when I'm
with um you know in in environments
where I know people are, you know,
they're plenty nice, but I know they're
not giving us the whole story, right?
They're just kind of giving
[clears throat] a a mask of who they
are. And now I sit in those meetings and
I'm like, [sighs] that's too bad.
>> Yeah, it's too bad. It's like, oh,
yeah. Yeah. I I used to be like, "Oh, I
wish I could hold it in that good," you
know?
>> Yes. Like that's not even the goal
because like now my expectation is
authenticity.
>> Yeah. Awesome.
>> Oh, thank you so much. Is there anything
else you want to say before I shut off
the recording?
>> Uh, no. Just thank you for inviting me
and I really appreciate being a part of
all this. I really, really do.
All right, I want to I want to add some
commentary. I feel like I don't even
know when I personally evolved my
thoughts on this, but when we watch old
interviews, a lot of times I'll like
notice when there is, you know,
something that doesn't match my current
worldview. And the end right there
really did like this whole idea of of
authenticity and like I mean yeah of
course it would be best to feel safe
enough to be authentic. Um
but I wish what I I mean that that
interview was recorded maybe in March of
2024
and I mean that was a long time ago. Um
half half and all brains belong lifetime
ago. um just just like sort of
acknowledge that like when someone is
not able to be authentic, it's because
it's not safe and like the what's like
at the end when I was like yeah it's so
bad like it's bad that the environment
is not safe and I wish that I like would
have named that 2 and a half years ago.
I also think that like what did not come
up in that discussion at least you know
not that excerpt from it um it was a
longer interview that we watched um a
couple years ago um but it's just like
when there's not even capacity
to engage because the systems are so
broken that they are thwarting basic
needs and like the like the when you're
being harmed by a system it's just so
difficult to do anything and just like
the the weight of that and
the pain of that. And so it is hard when
some when like you know I think back to
like um Lizzie if you could find the um
the recording from nervous system 101. I
think it was like January 2025 maybe.
Um, but like the idea of like when you
are in a survival response and you are
like collapsing, you're in just energy
conservation, the bare minimum to
survive. Like if you if if you're in
that place, you can't actually move
through to really feeling better without
taking action, without moving into a
sympathetic nervous system state, like
an activated state. Um, and
like there's something about for me
moving through that activated state that
like
is what allows
anything else to happen. But when that
like shutdown collapse
um I think many of the people that we
spend our time with um the system is
just it's so big.
I'd love to open this up to what's
standing out to anybody else.
anything you're taking away from this
conversation um or
thoughts you're having about systems
change or otherwise
either out loud or in the chat.
Hey Sierra
say I had to take a phone call for part
of this so we might have already talked
about this. I'm sorry if this is
repeating, but I one thing I always that
this conversation brings up for me is is
that idea of like not being able to
choose what activates our nervous
system, not being able to choose. We
don't get to choose what makes us feel
safe or not. Um, and that can feel
frustrating and it'd be nice if we could
choose and if we um but remember that
like we we can't and other people can't
choose what um what makes their systems
feel um unsafe or not. Um and so
starting from that place of like okay
this makes my nervous system feel unsafe
and starting at I trust that I believe
that and that is the that is the
groundwork and then kind of going from
there versus I I I am so many times
spend a lot of time trying to
investigate like is this reasonable to
feel unsafe about like why am I feeling
unsafe about that and those questions
can maybe happen at some point but
needing to start with okay I trust my
nervous system's reaction.
>> Yeah. Yeah. Totally.
Um, this comment in the chat, it feels
like the systems that most need to
change to include all brains and bodies
are those least willing. I'm thinking
about students unable to stay in school
due to lack of safety. Yeah. No, a
thousand%. Right. And I mean, not only
do
our students and and you know, it's just
like it takes so much privilege to be
able to opt out of unsafe systems. And I
think that, you know, even even if a
family were to recognize that there's,
you know, a school environment that's
not a not a fit and is causing harm,
like
the privilege of actually opting out of
that, like you, you know, you have to be
able to
have caregiving, you know, a caretaker.
You have to be able like there's just so
much economic privilege and like all all
of that that I think that people people
are stuck in environments that are
obviously harmful.
Brian says it's such an important idea
that we can't choose what makes us feel
unsafe. Yeah, definitely. Yep. It's an
involuntary automatic nervous system
response.
And I think like
I say this often, maybe in brain club,
maybe maybe all day long, is like the
idea of part of reconnecting with
intuition for me has been to like trust
my nervous system. My nervous system
might be overalling it like 90% of the
time, but I'm like Sierra was saying
like I'm just going to believe my
nervous system that there is some kind
of threat here and I don't need to
examine it. I can just acknowledge that
I'm having a nervous system response
and I don't get to choose.
Standing out to others.
>> Hey Paul.
Hello.
um
[clears throat] just a smaller thing but
it's making me well not smaller but
making me think of um people basically
the service industry but a time when I
gone over to France like not so many
years ago and little [clears throat]
like uh grocery store around the corner
that we'd go to from our hotel the
cashier would sit in a chair and
yeah that makes sense they're going to
be standing around but I just feel
there's a lot of
Americans there the expectation you're
on your toes for me like where it
doesn't really impact the job at all. It
would just be great to see like if
someone wants to sit or stand whichever
you know as long as they're doing their
job that would be
it'll [clears throat] be fine with me.
>> Yeah. No, totally. Just the idea of like
when someone needs something
um it's not a big deal. you can just
have it. Um, as opposed to needing to
prove that you
deserve it or that you, you know, in in
in the way that, you know, things get,
what's the word I'm looking for? It's
like
I don't know the word I'm looking for,
but where I'm going downstream is that
now we have these tensions around like,
you know, why does so and so get special
treatment? It's like, well, what if
everyone had their access needs met?
Then we wouldn't be when people have
their needs met, they can handle seeing
someone else have their needs met,
but that's really rare.
I would add that like the the other goal
on top of that is that stools could be
available to anybody, any cashier who
needs them. like that idea of universal
design of having them available so the
person doesn't have to be the one to
think about the accommodation that might
be helpful, figure out if it's
reasonable, figure out how to ask for
it, ask for it, maybe even pay for it
themselves. Um,
but [clears throat] if we could have a
have a world where that is more not only
normalized but just like routinely
available. Um, pretty cool.
>> Yeah, totally. And you know, we talk a
lot at Brain Club about like power
systems. And so like part of, you know,
any kind of power dynamic is that the
the system should take care of the hard
thing, not put the burden on an
individual to solve for the hard thing.
Um, so you know, it should not fall to
individual employees to ask for chairs
that work for their bodies. Um,
and I think universal design flips that
on its head, which is that these are
available to anyone to everyone so that
multiple people have or like more people
have more opportunities for full and
meaningful participation.
I wanted to say something that Lubie
said that really struck me was uh you
know I'm 50some years old and I'm going
to have to be my authentic self at some
point and uh I really identified with
that you know um I've had a couple of
opportunities to be au my authentic self
and then I really like it and it's still
like there's so many times it's like oh
god it would just be so much easier to
do the thing that I think is going
seem normal, you know, and say or do the
thing that I think is going to just like
be nice and smooth and acceptable
instead of like trying to actually
express what's going on inside me, which
unfortunately doesn't always go over
really great. So,
but there are some people I know I can
be myself with and it's going to be good
and but even then it doesn't always it's
not always easy, but it really feels
good when I can do it.
I relate to that so much. Um I think for
me sometimes I find that I have these
over rehearsed neural pathways like
these habitual ways of showing up and so
you know even like today I was at the
bank and I had to there was like a
problem with our bank account and I had
to go solve for it and so what did I do?
I was stressed because I had to you know
it's like the burden the executive
functioning of going solving this
problem. Um, and what did I do? I like I
used this really neuronormative script.
Um, I poked my head in um to the person
who I thought who could solve my problem
and I said, "Do you have a minute?" My
gosh, why am I saying that? I hate when
people say that to me. Like, I don't
have a minute. And like, tell me what
you want to talk to me about. But these
things that just like come out, they
roll off the tongue because I spent
40ome years doing that. Um and so you
know even when people are
safe safe people I think many of us like
find ourselves repeating these habits
and like the old way it creeps up.
I totally agree with that. I find for me
that it often takes a lot longer
timewise to present as a more authentic
version of myself. I have to if I'm
having a conversation, I have to like
take the initial thought my brain has
and backtrack it and be like, "Oh, that
was my automatic thought. Backtrack
that. Okay, what do I actually want to
say? Okay, now I say that." It's like I
can only do that if somebody has time in
a conversation for me to spend five
seconds thinking about my answers before
I say them every time. um which is not
always not always feasible and not
always just what I want to do. Sometimes
you just want to get through the
interaction and and get out of there,
>> right? But like the processing time that
you're describing, like you need that
like processing time is an access need
and if it were afforded to you, you
would be able to say what is on your
mind maybe as opposed to like I got to
come up with the thing fast because
society expects me to move fast and
think fast and like all of that. Um I
did a a media interview for the book a
couple weeks ago and I I always ask for
questions in advance. I have figured out
that that helps my brain so much to like
organize my thinking a little bit. But
the journalist asked me something that
wasn't on the list and my automatic
response was like not a good response
and maybe like just anyway. So we
finished the interview and meanwhile
like the part of my brain that's like
rehearsing that and thinking it over of
like rehashing like oh I didn't like
that. I didn't like that. I feel really
bad. This was unexpected. It was
interrupting my flow and I feel stressed
and this was this is hard for me. And of
course it is because that's my brain,
but also like I get to ask for what I
need. So the guy was already down the
hall. I flagged him down and asked him
to come back and I gave him another
answer. Um, and fortunately like that
worked out, but like it's so stressful.
I mean, I think a lot of people have had
the experience where you're replaying a
conversation afterwards and you like
then you come up with the perfect
response afterwards and you're like,
"Yeah, I wish I said it that way." Okay.
Like we don't usually get a chance to
revise in real time.
I'm going to read in the chat. Um Alvar
says, "I have to deal with a lot of
systems. Therefore, I get activated and
disregulated often in interactions with
those systems trying to get my needs
met. Um one thing I've been thinking
about lately is how to navigate the
shame and stress I experience after my
nervous system reacts." and I advocate
accordingly. Um, despite being kind and
respectful about things, 99% of the
time, systems don't appreciate it and
often let me know that. So, shame and
stress comes up. Yeah, I philosophically
don't want to apologize, but emotionally
do, I guess. Um, yeah. Right. So like I
think that's I don't know Alvar if this
is the same or similar to
like what I was saying before about the
like habitual ways of showing up like I
I habitually apologize because that's
actually how I stay safe. Like if I'm
apologizing it's kind of like a you know
I think for a lot of people apologies
are a fawning response like the
peopleleasing part of like this is how I
stay safe. these people that have power
over me. If I am apologizing to them,
they will hurt me less.
Um, Brian says, "Lots of us find that
some things that we think should be easy
are not easy for anyone." Yeah. Yeah.
Like even when my child says something
like, "That's so easy." I don't want I
don't want them thinking that like
what's easy for them is easy for
everyone. And just like I don't want
them thinking that what's hard for them
is only hard for them. Like it's just we
all have different brains and some
things come easier and some things are
more difficult. So it's like yeah that's
easy for me is the um the caveat they've
been turn they've been taught to say.
Um yeah comment in the chat I hate this
power thing. The power play. Yeah for
sure. like the power over
um is part of how systems perpetuate
systems and you know
yeah
um the chat uh what Albar said is so
relatable it feels more shameful when it
happens from the stress of navigating
the systems for my teens care and my own
Yeah. Yeah. Right. I mean, it's like
these systems that make us feel so bad
about ourselves. Like, we feel bad
because it's exhausting and we feel bad
because, and I don't know if this is
helpful, but like shifting shame from a
thing I experienced like a noun,
shifting it to a verb, they shamed me,
that reminds me that it's a them
problem,
not a me problem. I feel shame and you
know certainly I feel shame all the time
and I name it to people and then almost
always someone else says that they have
experienced something similar and that
helps me feel less alone and less
shameful. But like the verb shame that's
not a me thing. Someone else does the
shaming
All right. Well, as we wrap up tonight,
um
just as a reminder that next week we
have our uh special hybrid bl brain
club. I'm going to share screen again
one more time. Um, Lizzie, if you could
put a link in the chat to Kell Hubard
Libraries site about this event for
anybody who wants to come in person. For
folks participating by Zoom, it's just
the same same Brain Club link. Um, and
uh we we we hope we hope to see you um
in either pathway. Um, and again, if
anybody wants to share any reflections
about um, what being part of this uh,
grand social experiment has been like,
um, we'd love for you to participate
either either in person or virtual. Um,
and Lizzie, if you can drop your email
address one more time. Um, so anyone
who's even thinking about participating
might be able to take it.
Thanks.
All right. Thank you so much, everybody.
Um, we hope you have a good week. Hope
to see you next Tuesday. Bye.
>> [music]