Video summary
The Brain Club episode titled "Barriers to Rest" explores the profound impact of societal structures on the ability of neurodivergent individuals to rest and recover. Host Mel Hower introduces a community panel that examines how cultural messages equating human worth with productivity create significant harm, particularly for those whose brains work harder due to unmet access needs. The discussion highlights that these toxic narratives are deeply rooted in ableism—the discriminatory belief in the superiority of being "able"—which often becomes internalized over time as individuals convince themselves they are broken or insufficient simply because they cannot meet impossible standards of output. This internalization is exacerbated by a capitalist framework that demands constant busyness, forcing many to hold multiple jobs just to survive and leaving no room for genuine rest or healing.
The panelists delve into the concept of "rest as resistance," drawing inspiration from Trisha Hershey's work to frame resting not as laziness but as an essential act of defiance against a system designed to exhaust marginalized bodies. They discuss how structural issues, such as workplaces that do not allow for lunch breaks or sick leave, prevent even mental health professionals from modeling healthy behaviors for their clients. Furthermore, the conversation addresses the pervasive myth of "laziness," which is often used to shame individuals with chronic illnesses who suffer from systemic medical conditions affecting multiple body systems like the nervous and immune systems. The speakers explain that because healthcare providers are forced into a high-volume model where they cannot see patients holistically, many people go undiagnosed for decades or receive fragmented care that fails to address the interconnected nature of their health issues.
A major theme emerging from the panel is the necessity of shifting one's identity away from work-based definitions toward community-centered living and pacing strategies required by chronic illness. Many participants describe a painful journey of grief when they can no longer perform previous roles, such as being a full-time employee or an athlete, due to health crises like ME/CFS. This transition requires unlearning the internalized belief that one must constantly produce value to be worthy, replacing it with practices like pacing energy and accepting limitations without shame. The panel emphasizes that true recovery is impossible in isolation; instead, healing happens through community care, where individuals find validation and support from others who understand their experiences. Ultimately, the episode concludes by advocating for a cultural shift away from individualistic productivity toward collective well-being, urging society to recognize rest as a fundamental human need rather than a luxury or a sign of failure.
Read the full video transcript
Hello everybody. Um, I'm Mel Hower. I
use she they pronouns, executive
director of all brains belong. Welcome
to Brain Club.
So glad you could all be here and it's
nice to see nice to see returning folks,
new folks, folks who I know usually
participate asynchronously who are here
live. So lovely. All right, here we go.
So tonight we are going to be revisiting
a topic that we looked at last year,
barriers to rest. You know,
unfortunately, um, not just for neurody
divergent people, but for all people
living in this society, right? We get
the messages that we are what we
produce, we are what we do. Um, we don't
get the messages that we have value just
by being humans for showing up for for
our presence. Um, but like that's that
has such a such a harm these messages
that we internalize through our lives.
And so then, you know, if you're a
neurody divergent person for whom your
brain is just working so much harder
because your access needs are not met,
the things that you need for full and
meaningful participation, they are being
thwarted left and right by your daily
life. Um, it's exhausting.
And yet it's those cultural messages
that we've grown up with that actually
interfere with doing what needs doing,
you know, for our brains and our bodies.
And so we're going to be hearing from a
community panel of ABB community members
talking about this tonight.
Before we begin, closed captions are
enabled. You just have to turn them on
if you want to use them. Depending on
your version of Zoom, you u 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 hide
subtitles if you want to turn them off.
Thank you to the Alchemist for
sponsoring today's Brain Club and for
sponsoring our community health and
access fund, our mutual aid fund for our
patients.
If you are new to All Brains Belong, uh
welcome. Um we are here supporting the
health and belonging people with all
types of brains and we do that in lots
of different ways including brain club.
So, we're really glad that you're all
here being part of this work. And thank
you to our Brain Club supporters who
make it possible for us to be here uh
week after week providing neurodiversity
education and for being able to
compensate our panelists for sharing
their lived expertise.
If you're new to Brain Club, this is our
education program where we demonstrate
our approach to neuroinclusive culture
for purposes of shifting broader
community awareness of the issues of
concern and importance to our community.
It's also a space where we broke our
alliances with other communities, people
coming to learn about doing it
differently and that with the idea that
then everyone takes um these concepts
forth into the rest of our lives and
that's how culture change happens.
Everyone's welcome here at Brain Club,
neurodyivergent people and those who
support them as well as anyone who is
exploring their neuro identity or anyone
with any type of brain who wants to
learn about neuroinclusive 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 take breaks or anything else that
needs doing. Um during our pre-recorded
panel, you can use the chat if you would
like as you listen. Um you don't need
to. Observation is a valid form of
participation.
Um if you're new to Brain Clubs, some of
the things that you will notice, um this
is for educational purposes only. Though
you will hear our panelists talk about
some health concepts. This is not for
medical or mental health advice. It's
also not a support group or a place for
the audience to discuss one's own trauma
or their own experiences. We're really
here to center that of the panelists who
are making themselves vulnerable to
share their experiences.
So we invite you to listen, to learn, to
observe um and 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, it's
uh just keep coming back. It might take
a couple times to figure out the space
and how we facilitate it. And Liz is
going to put some frequently asked
questions in the chat. All right. So, um
our theme of the month, this is our last
month of our modified schedule. We'll
meet today and then on uh August 18th,
starting in September, we'll go back to
weekly brain club. Um so, uh our theme
is rest. We're going to be looking at
barriers to rest um with our community
panel today and then we'll hear from our
staff later in the month talking about
rest in healthcare.
All right. So, what this is going to
look like um is um we're going to watch
this pre-recorded presentation. I've got
a couple of slides in the recording that
we'll watch first and then we'll get
into our panel.
Um so, as I mentioned, we really uh
strive to center the panelists and
listen as they make themselves
vulnerable to us. We treat the chat as
equivalent mouth words. So, you know,
keeping the focus on the panelists,
sharing maybe what we relate to or
understand or expressing gratitude for
the panelists. Um, you're you're welcome
to do that as you listen if you would
like to. Um, okay. So, with that,
thank you to our actually before we
thank our panelists. I do want to um
talk about how at the be I think maybe
somewhere in the middle of the panel
you'll hear some panelists refer to this
amazing book rest is resistance um by
Tissa Hersy um and we'll put a link in
the chat to this um so when when you
hear this this is what this is what
folks are talking about.
Thank you to our panelists Ry Webaloki
Aspen Copper Simone Arnold Jay Green and
Caitlyn Blow.
Now I'll start our panel.
So before we uh begin with our panel, I
want to set the stage with some terms
and some context that you'll hear
discussed tonight. So ableism is the
discriminatory belief that it is
superior to be quoteabled.
This can be intentional. It is often
unintentional. It is often just like
baked into culture like so many of the
other discriminatory isms.
Discrimination based on race or gender
or sexuality. Um all of these isms, the
idea of grouping people and assigning
superiority of any group is not
consistent with a world that works for
everyone. And this is why we talk about
these themes at Break Club. um because
uh collectively we can um come together,
hear from hear from our community, have
these discussions and um try to do
things differently. But I think what
you'll hear in tonight's panel is
examples of everyday ableism that may
just like it's just
it creeps up. And um uh hold on, these
are out of order. uh internalized
abbleism,
which is the idea that just like any
other internalized ism, um internalized
abbleism is that when someone is exposed
to abbleist culture for a long period of
time, they internalize these messages.
I'm not good enough. I'm broken. I'm too
much.
And so um the idea is that um we talk
about the social model of disability all
the time where it's not about deficits
of the person. It's about lack of access
in the world. So if I had a visible
disability and I approach a building
that does that has a ramp, I'm going to
have less less disability than if I
approach a building that does not have a
ramp. And so it is with invisible
disability as well. What we don't want
we do not want the square peg being
hammered to fit into the round hole. But
that's what we have in in in so much of
our lives. So, um, and I'd say that
that, uh,
layered on into this is that many
people, maybe the majority of our
community suffers from a constellation
of intertwined medical conditions that
impacted so many systems of the body,
nervous system, digestive system, immune
system, connective tissue. And many
people suffer for for decades. um and
the health care system interferes with
people getting um this like zoomed out
pattern matched. And so what happens in
the 10 to 15 minutes that say a primary
care clinician is um offered often
allotted um you know you get managed for
the one or two problems at a time
without zooming out and recognizing that
everything's connected to everything. Um
oh that's amazing. Okay. So, uh Lizzie
put in the chat already. Um if you want
to learn more about those medical
problems that are really common in in in
our community, um there's a link in the
chat as well as a tool that folks could
use um to introduce these concepts to
their primary care clinician. So, um one
of the other Hold on, I'm dragging this
down. There you go. Um,
you'll hear throughout the panel the
concept of rest is resistance. So, this
is a a a book by Trisha Hersy and
there's a website that I'll put in the
chat. Um the idea that
so many systems of our society um
interfere with people being able to do
what needs doing for themselves. And
we're going to explore that uh tonight
through our panel. So uh thank you to
our panelists uh Ry Webaloki, Aspen
Copper, Simone Arnold, Jane Green, and
Caitlyn Blow.
Here we go.
We had some community members ask us to
do a brain club on this topic with just
the idea of how in neuronormative world
like
we kind of grow up with the message that
you are what you produce and you need to
be busy and productive and like all of
it. Um what's been your experience with
that?
It's been something I've been trying to
something because you want to because
you feel like you want to
um maybe even leave something permanent
behind
um or just leave something that wasn't
there before.
>> I started hearing about rest as
resistance.
I don't know maybe 10 years ago when
that was first started to be a thing.
Um, I don't have references, but I heard
about it first in the beginnings of the
Black Lives Matter movement and um, the
original and earlier versions of that.
Um,
and, you know, as as as dealing with,
you know, racial forms of
microaggressions and um, and things like
that in in different communities. So
that was sort of where I I first started
to really hear about rest being an act
of resistance and um being an important
piece of um of healing trauma.
>> Like from your perspective like what are
the socioultural barriers to
rest?
>> Uh the biggest one is capitalism.
um and in like its many facets in ter
like the way we internalize productivity
a as like a virtue in a capitalist
society. Um and then also the pressures
created by capitalism especially where
we're at right now where a lot of people
are having to work two three jobs in
order to meet their both but most basic
needs. Um, which means often there's
literally our society doesn't give time
for rest. And this shows up in like so
many different ways. Even as like a
counselor going through a counselor
education program, they talk about
self-care. They talk about rest being a
thing. And yet, we never identify the
fact that there are structural issues
that stop that process. That agencies
don't like make their employees take
their lunch break. They don't make them
step away from their work when they're
doing these things. they overbook them
with clients. So like even uh mental
health professionals who in theory
should be like modeling this for their
clients, they themselves don't even have
the structural support to do those
things. So capitalism I think is like a
huge thing. And then of course there's
also like personal narratives that come
up around that that are passed down from
generation to generation that can be
informed by like so many things, right?
If you come from a family where for
generation and generation you face
poverty and like barely meeting your
needs, even if you make it right, air
quote whatever that means under
capitalism, you will probably be
carrying that narrative with you from
those like the people who came before
you and it creates this like internal
sense of urgency around doing all my
aspects of privilege. One of my layers
of privilege is that I pretty much only
interact with the ABB community.
So, um I don't have the drain on my
battery from the outside world as much
as I did even 6 months ago. Um but when
you're interacting with the outside
world, the outside world is like telling
you all these profoundly toxic messages
that are so incompatible with like
thriving as a neurody diverent person
with chronic illness. What do you think
about that?
>> Yeah. Um, I think it's it's it gets told
to us from like birth and then just
keeps getting told to us, especially
those of us with like invisible
disabilities. Um, which I feel like half
my disabilities aren't actually
invisible if people know how to look.
just sort of not be getting down on
myself for not doing something
productive. Cuz
a lot of the times
uh product productivity is equated with
something that can be useful to a whole
group instead of something that's just
useful to you. I think it comes with a
lot of shame and guilt. And I think even
within the communities who were starting
to talk about that as an act of
resistance and self-care and community
care, mutual aid, rest as mutual aid. Um
that in in those communities there was
still a reckoning about the internalized
shame of productivity of um you know we
should be able to go 95 miles an hour
and not you know go the speed that that
we need to on any given day. um based on
you know trauma triggers are based on
energy based on physical health, mental
health um you know based on mitochondria
ability to create extra energy um in any
given moment in time. Um, and I think
also emotional health and just um, like,
you know, having a bad day at school or
having a bad day at work, you know, can
can cause, you know, a direct impact to
your ability to do the next thing when
you get home or afterwards. Um,
um, and I I think that there's
there is like that word laziness, you
know. Um
um
I think that that's a really hard
message to delete or erase out of our
own brains. Um,
and
it's really hard to pull it out and look
at it and refute it because there's so
much evidence saying what laziness is
with so many examples of what society
wants it to be in order to contribute to
the GDP of America, you know.
Um, and so many millennia talking about
what that means. And so few
groups of people that are small talking
about
refuting that those thousands and
thousands of arguments over the
thousands of years that there's been
that
system of oppression. Hover.
>> I come from a background of of studying
and thinking a lot about systems and um
kind of how how broader societal
patterns influence our behavior. So I'm
going to probably go from from big to
small. So So from like a a big societal
perspective, um I think we live in a
very individualistic society. We live in
a a
society that values independence, um
that values um self-sufficiency, quote
unquote. Um
and so that gets kind of programmed into
you from a really early age, even if
your family is super community-minded
and serviceoriented.
>> But like it's this thing that gets told
to us and gets so ingrained in us. Um,
and I think that like
it's so hard to unlearn that
and to like
different differentiate. I feel like the
hardest part is differentiating like
being productive
um versus like doing things that you
want to do. Um, people are always like,
"But I still want to be a productive
person."
And when I ask that what what that
means, they're like, "I want to do the
dishes. I want to like have a job. I
want to
contribute to my family." Like, all of
those things are totally fair to want
and not doing them does not make you
unproductive.
And also, I just hate the word
productive now because
>> totally I have such a I have such a a
visceral response to productivity,
accountability. There's all these like
freaking work words that are like
neuronormative and gross.
>> Yeah. So, for me, like I don't use the
word productive because I don't like it
because I'm not a product and I am not
producing a product. Um,
so [laughter]
for me, if I am going to my job and
doing things that I enjoy, I am doing
things I want to do. When I clean up
around my apartment, which I really
badly need to do because I want to,
because it makes me feel better, I am
doing things that make me feel better.
I'm not being productive. I'm not
producing anything.
None of this involves capitalism. um
except where it like inherently has to
like I get paid for my job as I should.
Um [laughter]
but I think that like it's so hard to
unlearn this idea that like to be of
value you have to produce something. You
have to be productive or else like like
our society says that like if you're not
productive then what are you like you're
worthless. Um right? So you're
worthless. You have no value. Um, and
you know, you you you get further
marginalized
>> because you're isolated from a society
that is oriented around
producing
>> once you monetize a hobby. Is it really
a hobby anymore?
>> Right?
>> You get the messages around like I mean
even think about like school growing up.
Like most of us got the message of like
the point of school is to like go out
and get a job and like be productive and
make money and like like all of that
constant messaging from childhood that
to succeed is to succeed as an
individual. Um and then um
yeah, I think that really contributes a
lot to sort of the feelings of
internalized abbleism. um for me that um
so I've got the external abbleism of
like you have to work full-time um to
earn enough to pay rent and feed
yourself and um even then there are you
know a lot of jobs don't even pay enough
to me make full-time work uh a source of
u of a livable wage. So um
so um so there's that external abbleism
and then there's sort of the
internalized things which which for me
shows up as like oh I should be able to
do this. Um I talk a lot with my
therapist about not using the should um
kind of phrases. Um, so, um, you know,
uh, telling yourself, well, I should be
able to do laundry and clean the kitchen
in the same day without sitting down in
between those two chores is just not a
possibility for me. Like, I need to
separate those out. Um, doing laundry is
a is a Tuesday thing and cleaning the
kitchen is a Wednesday thing. Um, so
yeah, so that's like it's really
challenging to to overcome societal
messaging and also to do the work of
sort of deprogramming the internal
impacts of that.
>> So
I think choosing rest is an act of
self-care. It is an act of resistance.
Um,
it's hard to see and answer the
question, what can I do if I can only
rest? You know, it's hard to answer
those questions. I remember in middle
school when, you know, the very like
tactile presentation of laziness as
academic schoolwork happens in fifth and
sixth grade. there's a shift between
being a kid and being in school for
words and reasons, you know, and there's
also an uptick in bullying and and other
yucky things hitting fans in lots of
ways. And um especially when people have
different identities that may be more or
less marginalized or visible to
communities. And so like the you must be
moving, you must always be doing the
thing like that also, you know, comes
from um coping mechanisms for
unrecognized neurode divergence. So
anyway, is that is that a thing you see?
>> Yeah. Well, also I see it sometimes as
like their own internalized shame,
right? Where often like they grew up
hearing that they were lazy, right, and
like myths around laziness and stuff.
And so they pass that on to their
children who they often like see the
parts of them whether or not they
consciously realize it that provoke
those feelings of shame. I can't tell
you the number of times I've worked with
uh clients who their parent who is
neurode divergent sometimes even
diagnosed and like the level of like
just like emotional abuse and sometimes
worse directed specifically towards
their neurode divergent child and it was
very clearly them projecting their own
self-hate and shame onto their child.
AB:
>> Absolutely. And I think that like so
that that child then grows up, right,
and is now the adult who can't rest. The
adult who is still having to prove that
they're not lazy and like all those
things that were in involved in the
internalized abbleism of their parent,
they've internalized that now as well.
And so it in addition to capitalism and
trying to have basic needs met, it is
also like I I I what what does that mean
about me if I'm not constantly
producing? Especially, you know, layered
on the capitalist version of like your
value comes from what you produce.
>> Um this is also where the
differentiation between self-care and
community care comes in where for a lot
of my clients, I focus on accessing
community care. Um because it's not that
they're doing bad self-care, it's just
self-care is not accessible to them
without community care at the same time.
Um and then the other part is like
examining the narratives about how they
believe things should be, right? So I
just did this recently where I was like
tell me about all of the narratives you
have around like adulting, right? And
>> internalized abbleism, you know,
executive functioning glorified like all
that.
Absolutely. So they're like, "Well, I
have to do this and this." And there's
like that perfectionism, right, which is
a symptom of white supremacy culture
comes out. And so we have to really
shift like what does it look like to
adult as a neurode divergent person.
>> And but during that process of going
through,
you know,
um all of that, the end was don't tell
anyone. This was very 2005. Don't tell
anyone. You've been passing so far. They
didn't use the word passing, but you you
know you've been faking it till you make
it so far. Keep faking it till you make
it. You know, keep keep pushing up
against this wall. Don't don't ask for
help because you'll be taking it away
from someone else who really needs it
with the message that of course you
don't really need it. And also, if you
ask for accommodations, you will not get
hired or you'll get, you know, booted
out of school or your teachers won't
give you good grades or, you know,
there'll be a there'll be a consequence.
There'll be a repercussion or a
retaliation for saying words. And so,
that was very 2005 and I very much took
that to heart. that can that can I think
a lot of people have known or even gone
through things um similar where
um because there's
um I think again tying into the whole
productivity thing you know doctors are
sort of forced to see as many patients
as they can in one day and so they don't
really give themselves time to look at
the whole person
And that can often lead to overseeing
something major or even something minor
that could turn into something major.
And that can lead to a whole lot of pain
and suffering in the long term.
>> Wild that I've I've had um some of the
conditions that I've been dealing with
my my entire life. Like they're
genetically based and I've had symptoms
or signs that I've had these conditions
my entire life. And it took until almost
35 to to get the diagnosis that actually
um that actually uh
fits the whole picture, explains
everything and points towards a towards
some practical treatments and solutions
to actually make life a little easier.
Like these wrist wraps, like I now that
I understand that my tendons and
ligaments don't hold my wrists together
as as tightly as they should, like I've
I've accepted that I need some kind of
support. Um, and now my my wrists and
elbows don't hurt as much because I'm
not over overusing my muscles.
>> Until recently, did you know how many
other people suffered with the medical
conditions that you have been afflicted
with for so long? Did you know how
common it was?
>> Um, lime. Yeah, lime and babesia and
bartella like the lime lime
constellations of evil. Um, yes, I knew
lots of people, but I also knew that
like we were all just crazy, right? Like
that was the internet presence of lime
was like y'all are crazy. Um, and it's
all in your head.
>> So that narrative was fed to you and did
you you you believed it like it?
>> Um,
that's a good question.
I have been called crazy since I was in
kindergarten.
So
in a way
yes I have been taught
externally to believe that about myself
and also taught to refute that
in order to keep surviving.
And there's a a interplay
between
how good I am at either one of those
things at any moment in time.
>> Sure.
>> Times the like
band-aid treatments for the one body
part actually makes other body parts
worse because our body parts are
connected. Um and there's not a a regard
for that either.
And in terms of the mind body um
connection specifically is that um I
don't know I think it might be getting a
little bit better over the years but
there's still a sort of
um
separation between what goes on in your
mind has an effect on your body and vice
versa. It's like it having like you have
to have the right in my experience you
have to have the right diagnosis to have
a perspective shift of like for me it
was like oh there's nothing I can do to
fix the fact that my wrists are just a
little weaker than other people's and
that the right thing to do is to accept
that I need some some supportive wrist
straps instead of um continually denying
myself access to something that I need
because it's it's different or because I
feel like I should be able to um
exercise my way into stronger wrists.
Like, nope, it's just not going to work.
>> Totally. And we can acknowledge how hard
it is to make that shift when you when a
person is getting messaging not just
from random people, but from their
health care providers like, "Nope, can't
you just be a little bit more active?"
It's like, "Does my mitochondria don't
make ATP?"
>> Yeah. And the other thing I think is
that um the way that to to bring it back
out to a wider systemic perspective, the
the way that um the way that the US uh
does like sick leave and you know
parental leave and just like medical
leave from work is so
so abbleless. It's um like yeah it's um
I think we would see I think there is
significant um evidence backing the
position that giving people more time
off to rest and more access to health
care and sick leave um makes a huge
difference. You're forced if you feel
you're forced to do um to be busy, to be
productive,
and you don't allow yourself moments to
just
um
remember that you're in a body that has
um needs, then obviously you may end up
crashing and burning in ways that can be
irreversible.
Yes. And I think like that experience is
just so common in our community here um
of like decades of like sucking it up,
pushing through
and until until a point where one can no
longer do that.
>> With that, you know, there comes a a a
loneliness um with with a I can't tell
anyone. Nobody believes me. Nobody wants
to believe me. because then it means
something else about maybe them or the
world that they see or their perspective
about what work is and what rest is and
what health is and what what good or bad
is. Um,
and I remember that it gave me the
opportunity to slow down from 95 miles
an hour to like 50 m an hour, but I
should have slowed down to 35, right?
Cuz that's like a generally nice way to
be. you can see you've got stopping
clearance. You you've got some margin
for error, right? But like at 50, you're
still going a little too fast. And at 95
is just like that's just bad news. So I
I very specifically found things that I
didn't have to do anymore, which allowed
me to rest. Like the people in people in
our community are who have chronic
illness, like they need to they need to
they need to pace. They need to freaking
pace. They're not going to get better
until they pace. And you know, pacing is
a privilege. Um and we can try to
support basic needs and try to connect
to resources and try try all these
things. But like if if if there is the
um component of shifting narrative or if
it's if this is a narrative issue um in
in in many ways I feel like that is part
of my job is to help people with that
narrative because they're not going to
get better if they don't pace.
>> Yeah. It's it's a multi-pronged approach
usually. So part of it is identifying
what supports can we access, what
supports do we need, and like what
narratives get in the way from accessing
those supports. It really motivated me
to like really think about my energy
budget and um do like take more breaks
kind of in between activities like um
yeah and just like do what I can from a
sitting or reclining position instead of
standing up. And um that was like about
a month ago or three weeks ago that I
finally started really really doing that
seriously. And it's it's definitely um
had some benefits for sure. How do you
reconcile? What do I do from my chair?
What do I do from my
bed? What can I um do from my computer
or what can I do without a computer,
without looking at screens? Some of the
days when you can't look at screens, you
know, how can you be connected when you
can't?
>> Totally. So, I think for me what comes
up there is it's also part of for many
an identity shift. um when someone
becomes chronically ill.
>> A lot of grief I think um is the right
word for it involved in um accepting
that I have some limitations right now.
>> Huge process. I I definitely went
through that. I was a jeweler for 20
years and I was teaching um neurody
divergent kiddos high school. I was
teaching calculus and um other subjects
that were complicated and hard but
mostly calculus is really hard. And um
overnight I couldn't do math at all. I
couldn't read a recipe. I couldn't
understand.
I couldn't help my kid with the
homework. And they were in like first
grade, you [laughter] know, like it was
this bizarre shift where um suddenly I
was also allergic to everything
including gold. And gold is
hypoallergenic. But it meant that both
of my careers that, you know, was my
survival with me and my kiddo um were,
you know, a rug yanked out very
violently from underneath me. I tried
really hard. I pushed really hard. Um I
ultimately crashed really hard.
losing the um
the things that I used to draw a lot of
selfworth from. A lot of um athletic
achievements, a lot of um volunteer
work, in-person volunteer work, um
things like that. Um
>> a really messy, mushy,
loopy kind of journey.
>> Yeah, I I love what you said about this
being sort of an identity change because
I'm I'm really used to defining my
identity along the lines of like I'm a
I'm a graduate student. I'm a policy
analyst. I'm a you know uh I'm a road
cyclist. I'm a rock climber. I'm a you
know these very active sort of verbyy um
identities that are specifically related
to a lot of um
high energy, high activity um kind of
things. Um, so now I get to figure out
um I got to figure out some new some new
things that I can do um to some new
labels and some new things. Um it's
really hard. I think the hardest one of
the hardest things has been um when I
meet new people and they ask like, "Oh,
what do you do?" Because they usually
mean like, "What do you do for work?"
And I'm like,
"I'm not working right now. I'm taking
time to recover from chronic illness."
And I
have a cat who I love, who I take care
of, who I play with. I have um I do a
lot of cross stitching uh embroidery
watch watch video essays about media
critique on YouTube you know like I I
have to find the things that and it's
it's an interesting thing to to
I feel like I'm I'm shifting my own
perspective and I hope that I'm also
shifting other people's perspectives by
um maybe uh
I don't want to like preach at them like
well what you just said is reflects the
abbleism in our society where people are
defined by work. I want to just be like,
well, actually, I'm not working and
here's what I'm doing to to keep myself
occupied and find joy instead.
>> Not any reflection on you. People should
not go around asking people that. It's
so abbleist. It's so gross. It's so bad
for a community. It's so bad for
building a world that works for
everyone. It's just bad. this has only
that you're already noticing a benefit
from a very short period of time um is a
really big deal and I think that's going
I I feel like this is a public health in
like intervention that you're doing
right here. It's like people need to
know this at at the same time that I
appreciate you saying that I'm modeling
good um practices around rest. I'm also
I also want to acknowledge that like
it's it's a it's a dayby-day thing, you
know, two steps forward, one step back.
It's it's very much like a an ongoing
learning journey and not a not something
I feel like I've really mastered. It it
it's a different type of strength than
doing the same old thing of like sucking
it up and cortically overriding and
pushing through. like it takes the word
that's coming up is like bravery, but
that's not the word I'm looking for.
It's like some other like fill in the
blank. It's a word that is a word that
is doing something different. Can you
talk about like how did you decide to do
it differently?
>> I think actually what changed was that
um I went to an all brains belong uh
group medical education session on
chronic fatigue which is one of the
things that is on my um CVS receipt of
diagnosis. Um, and uh, we talked about
the sort of push crashed cycle. Um,
which is what I was just talking about
that sort of pushing yourself too hard
and then crashing uh, and having really
severe uh, chronic fatigue symptoms. Um,
and it finally clicked for me like, oh,
this is what I do. I
>> figured out in community that I have I
have to it's not an option. I have to
opt out of the boom bus cycle
>> like that. So yeah, I think the the
solution to the sort of individual
individualistic society and the external
and internalized abbleism is like
connect with other people who can
validate your your experience and and
say like, hey, you're not alone in this
and find ways to find ways to find like
fulfillment and um contribute in ways
that feel meaningful that also don't
exhaust you completely.
>> So grateful to you for naming all of
these things. This is like exactly the
point, right? And so if everyone is
trying to overcome and unlearn all of
these things individually, these things
cannot be unlearned individually. At
least not I don't I mean not to say that
also as a person new to chronic illness,
um I I don't even know what this would
be like to not spend my whole day around
other people who get it. I have no idea
what that would be like. that would um
I've never tried. I wasn't I wasn't sick
until 6 weeks into starting ABB and um
and where I I I slipped on the ice and I
landed on my head and I got ME/CFS and
then I got CO a year later. Um and like
the the the the whole journey of doing
everything my my experience of doing,
you know, in an a parallel journey to
you and parallel to like almost our
whole community. Um is that we do it
together. We do it together. We figure
it out. It feels really radical like why
like what do you mean I'm going to like
interact with other people? Why would I
do that? Other people suck. Um anyway,
what has been your experience of of of
meeting others in the ABB community?
>> Yeah, I it's been wonderful. Um really
wonderful. I think that
>> all of us have so many things in common
and also so many unique things that make
us us. And I think
the value is just being people and
recognizing the genius of all people
with all brains and all bodies and all
ways of growing and all ways of knowing
things. And
panel was was so so so powerful. Thank
you again to Ry Webaloki, Aspen Copper,
Simone Arnold, Jay Green, and Caitlyn
Blow.
Given us all so much to think about.
um to to me what stood out themes from
our panelists that I think were
reinforced in in multiple passes by
multiple people was the role of of
capitalism and abbleism and and all the
isms really that impact self-v valueue
and identity and especially when we
think about the intersectional
experiences of people who are otherred
for multiple aspects of identity and
then you layer on also these
um and and on top of that um for for
many who have have chronic illness,
particularly uh chronic illness that
they are learning to transition an
identity with um because it's new. Um
and um uh since since many people in our
community have chronic illness that
specifically includes um problems with
how the body makes and uses energy, this
idea of pacing or adjusting activities
about how the body spends energy is both
a requirement for recovery and an
exceptional privilege to be able to do
and still get one's basic needs met.
and of course the systemic barriers to
chronic illness recovery, systemic
abbleism and the practical realities of
of economics
um and barriers to care and barriers to
connection and and and all of it. Um,
so, uh, with that and we went over
a a bit, but I really app
Thank you again to all of our panelists
and thank you to everyone who
participated in the chat. I'm going to
wrap us up with a couple of
announcements.
Um, so again, no brain club next week,
but we'll be back the week after on
August 18th. um looking at burnout
prevention um and and and incorporating
rest um working in healthcare.
Also, if you can save the date for uh
the first brain club of September um
September 8th, we're going to be doing a
hybrid brain club. For those of you who
are local to central Vermont will be
gathering outdoors on the lawn of
Kellogg Hubard Library in Montpillar and
then of course on Zoom as we as we
always do and it's going to be a
community storytelling
and we we hope that you'll participate
in in uh one one path or another. Um and
it's to celebrate the it's launch week
for all brains belongs new book um a
failure of imagination how the
healthcare system fails neurody
divergent people and what we're doing
instead. Um so um you know you heard
community care come up um throughout
today's panel and really um the all
brains belong story is a story of
community care. Um and uh if you're if
you're interested in in uh getting
notified when the pre-orders will start
in a week or two if you're interested in
in finding out about that um I'm going
to put this link in the chat or Lizzie
if you could put that link in the chat
that would be awesome.
Allbrains belong.org/book-list.
Oh, thanks Lizzie. That's great. All
right. And so, uh, with with that, thank
you all so much, uh, for for being part
of this conversation, and we'll look
forward to seeing you in two weeks.
Thanks, everybody. Bye.
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