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All Brains Belong VT - Brain Club: Barriers to Rest 8/4/2026

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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.
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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. [music]