 So thank you, thank you everyone for joining us here for Brain Club, it feels like we've come full circle. This is how many of us gathered for so long for our first six months of Brain Club was all virtual. And so for those, I think, I know everybody here but there may be, I think there's some folks registered to watch the video, so I will introduce myself. I'm Mel Hauser, I use she they pronouns and I am executive director here at All Brains Belong and Brain Club is our weekly community lecture discussion series where we talk about everyday brain topics. And today has been a long time coming because we are going to talk about the brain rules of the healthcare system. We're talking about like what do I even mean by brain rules in just a second, but first some ground rules. All forms of participation are okay here. You can have your video on or off. You do not need to look at the camera. You can move around, fidget, snack, take breaks. Everyone's welcome, have kids and pets and stuffies and all the things. And you can communicate however works for you. You can speak type of chat box, raise your real hand or your emoticon hand, whatever works for you. And we affirm all aspects of identity here and respect and protect one another's access needs. We love to talk about access needs here because it's important and we all have access needs. And speaking of which, if you have the kind of brain like mine that benefits from closed captioning if it is not popping up for you automatically the way you do that either clicking your live transcripts you see button here or your more dot, dot, dot. And if you have the kind of brain that does not want captions on and you wanna throw them off those are the same ways to turn them off to click either show subtitle or hide subtitle. So I'm gonna tell a little bit of a story before I introduce our parents. So we're gonna be talking about the healthcare system here. And by way of disclosure, I have had to do so much on learning. And in short order, I was trained in the traditional mainstream medical education system practiced for a while in a mainstream healthcare setting. And I thought I knew what I was doing. I thought I knew how to communicate. I thought I knew how to take care of patients. I mean, I did, but I was not neuroculturally competent. I was not neuro inclusive. The way I was trained was the way I saw the world and that's how I thought it was. And then along came Luna, that's Luna. So actually that's on the left that's me six weeks before I gave birth to Luna and Luna made it very clear that though I was a doctor trying to take care of babies, turns out I did not know how to meet Luna's needs because Luna made it clear in no uncertain terms that our environment was causing significant disability. And she let us know all day, every day for many months. I'm gonna just fire a little bit of a content warning because we are going to be talking about the many ways in which the healthcare system does not meet patients' needs. And that can be hard because the thing is we all have brain rules. And by brain rules, I am referring to the things that we think are universal life truths, but we really made them up or someone else made them up or the system made them up or we grew up with them and internalized them. We internalized them from culture, the way we were trained, the places we work, like all the things that does not make them world rules, like objective laws of physics. And so the thing is the healthcare system, the brain rules of the healthcare system make it function but that doesn't make them world rules. And what I'm gonna share with you is, and I have to go a little out of order of the slides in which I created them, here we go. Autistic adults have poor access to healthcare. Almost 80% have difficulty accessing primary care and almost 70% with untreated healthcare conditions. More healthcare expenditures, healthcare interactions, more medications, and yet despite all of these like healthcare interactions, only a third of autistic patients actually have a good relationship with their primary care physician, despite over 70% reporting in a study that came out a couple of years ago, that they wanted one. And in fact, over a third of autistic adults don't even tell their PCP that they're autistic. And so not surprisingly, there were lower rates of running care. There's extensive barriers to care from the environment, the system as a whole, where the defaults of the healthcare system are a mismatch for patients' needs. And as a physician trained in the traditional medical education system, this is true. The literature shows that autistic patients perceive that providers have insufficient knowledge and skills and unhelpful attitudes. I'm muted somehow. Can you hear me still? Yeah, okay. So yeah. Yeah, okay. So when training is poor, not surprisingly, healthcare doesn't work out very well. Autistic patients are dying. Average life expectancy, 36 to 54 years with up to eight times increased risk of premature death, not dying of autism, dying from premature cardiovascular disease and suicide to nine times increased risk of suicide as compared to non-autistic adults. And so, and that risk I should also note is higher in those with lower support needs. So like I wanted to start this, that the system's not working. So what I wanna talk about is like, we can just sort of accept this as a premise, like this system's not working. So as we can zoom out and reimagine what healthcare could look like for truly neuro-inclusive healthcare. And we'll hear from our panelists, both healthcare providers and patients, reflecting on what could this look like? What's possible? Because I think it's really exciting to have the opportunity to reimagine what healthcare could look like. So what I'm gonna do is, I can just go back to my slides, although I never get the motor plan down to adjust my slides before I start talking. All right, here we go. Brain rules versus world rules conceptually. We did a brain club about this in the spring. But so what I mean by that is I described before, they like impact the way that we internalize our expectations of ourself, of other people, of systems. But also this really can become collective expectations, that this is like how it has to work. And this impacts everything. It impacts all of our interactions. So examples of this would be, well, an example I like to use at home is Luna often doesn't wanna wear shoes and clothes. So if we're trying to go downtown, get a cookie, and I say to Luna like, hey, if you'd like to go into the bakery, you gotta put your shoes on. And she's like, mama, that's a brain rule, not a world rule. I was like, yeah, that may be. However, it is not my brain rule. In fact, the bakery folks, they made that brain rule to keep them safe and to keep their customers comfortable. Because if you had a whole bakery full of people with their shoes off, like I don't think that this would be a comfortable environment for all people. And Luna's like, ha, all right. But it's up to you. You have all time that you can choose not through the bakery. So anyway, that's like how that works. Like you don't have to get rid of your brain rules. You just have to kind of know that they're not world rules. And so with that, I will introduce our panel. Maybe what I will begin with is I'm gonna introduce, David, do you wanna go first? Yeah, sure, that'd be fine. Okay, well, then I will introduce you, although you added to your introduction in a way that I thought was pretty funny in terms of your extensive graduate training in patient hood, right? So, David Bercher has seen the medical community from the patient side for 27 years and has also worked on the other side of healthcare in a semi medical, large assisted living facility in San Francisco working in information technology. And David's going to share with us experiences from seeing different styles of medical practices all the way from the typical 15 minute visit to other forms. So, David, take it away. Yeah, so anyway, I've been dealing with a health issue for 27 years. Finally knocked me out of work in about 2018. Many of you may recognize this model, but let me hear, see if you can hear this. Very against the medical community. I think we could all live without. Like when you go to see the doctor, you don't see the actual doctor first. You must wait in the waiting room. There's no chance of not waiting. That's the name of the room. And you sit there, you pretend you're reading your little magazine. You're actually looking at the other people. I wonder what these guys are going to do. Get very excited when they call you, because you think now you're going to see the doctor. But you're not. Now you're going into the next smaller waiting room. Now you don't even have your magazine. Now you've got your pants around your ankles. You're sitting on that butcher paper they pull out over the table. Anyway, that has been my experience for a lot of going through that routine of that. I later on ran into some practices where I actually got an hour visit. And that was very helpful. I think a large part of the problem I've run into is that for a doctor to understand you, you need to be able to tell them your story. And if you can't, you can't do that in 15 minutes. So I've gotten kind of an alternative route where I will write stuff up like I did with you and send in a long document. Some doctors will read it and a lot of them will never see it before you get there. Then it doesn't work and then the appointment because they're looking at this thing and said, do I need to read this first? So that falls apart. What I really was amazed about was when I was looking for somebody up here, they saw all brains belong. I was like reading the website. So they go, oh, this sounds pretty good. And then when I started filling out the form, I was like, wow, this is exactly the kind of thing I'm looking for. And then I sent you my mind maps and my emails. I think other doctors would have been just overwhelmed, but instead you're like, oh, this is so cool. This is so helpful. And I've never run into that before. So I think that inclusivity of being able to communicate in the way that you can. Some people are probably better in person. For me, it was definitely, I need time to really think it through, especially since I've had a long history of it. So your organization has broken so many of the brain rules that I've seen in health care. And I'm trying to think about some of the other things that I've run into a lot in health care. One of the things that drives me nuts is you go see one person and they're siloed. And then you go see the next person and they're siloed. And the cross information is like, they're OK or they're not OK. And it's not really a team effort. It's very different like if someone goes into surgery, you have an anesthesiologist, you have a surgeon, you have other people, they're all working as a team on one project. And I would think that would be such a good model to have something like that. I had one doctor where they had a doctor and a psychiatrist on the same office and they would work together. And I thought that was kind of interesting. But this is San Francisco where they can afford to have multiple different specialties in that same office. But some of the other things I ran into are not, a patient will express certain ideas and then they immediately dismiss them without any thought. And that's really been an annoying thing because I've seen so many specialists and I've read so much that I feel like a lot of times I go in with more knowledge on the subjects than they have. And I don't know if it's threatening or they're just busy or it could be a combination of things. But they dismiss that. I've also run into a lot of what recently seems to be more of a Vermont thing, but gatekeeperism, where they, I think they're in a system that's trying to save money because that's been a big push to reduce health care costs. And especially up here in the Northeast Kingdom, I will go on the sale. I actually had a doctor say, well, it looks like you've probably cost the health care system a million dollars. And that was not a very helpful thing for me. And then also another doctor was consistently blocking me from seeing other patients. So that kind of gatekeeperism thing was kind of weird. The other thing I thought was a brain rule is like, there's so much reliance on testing and not thinking through creatively. Because a lot of the tests, your symptoms might be in a certain set point in time. But then when you go on for the test, it might be weeks later and your symptoms are gone. And I've had that with EKG, EKG's been a Holter monitor. They'll do a three Holter monitor. It happens to be those three days where I don't have any skipped heart beats or anything like that. So yeah, so testing is a snapshot in time. Yes. And it is so frustrating, so frustrating when there's, I mean, I see this as a conflicting access need point when your access needs are to be listened to, to be heard. You can kind of see that it's a system thing, not necessarily an individual within the system thing. And we see this play out. And yes. So David, thank you. Thank you for sharing that. Because it's so hard for so many people. And believe it or not, there are people that think that it's only hard for them. So I am grateful for you sharing your story. Yeah, no problem. What I thought that we might do might be, I'm going to introduce Laura. Is it OK to go next? OK. So Dr. Laura Lewis is a professor of nursing at University of Vermont and a researcher studying the experience of neurodivergent adults. And look, I did that from memory without a visual support. And Laura also has experience working in a hospital setting. And so I think bringing all of these perspectives, take it away. Thank you, Mel. Thank you for inviting me. So my experience is as a registered nurse. And I will say that my clinical experience as a registered nurse was now most recently six years ago. And so I've come a long way in my research and in working with people who think differently and communicate differently a lot since that clinical time. But thinking through the brain rules of my clinical practice was honestly a really interesting exercise. I think of like Mel started this out with a lot of unlearning had to happen. And I think I've spent six years unlearning most of what I learned in the years that I spent in clinical practice. So a couple of things came to mind to me thinking about this. One is I think the biggest is that we are kind of taught that people want to look and act and feel and communicate a certain way. And that that way is that neurotypical mainstream way of thinking and looking and acting. And so if a patient comes in who doesn't think or look or feel or act the way that we sort of see the mainstream way of thinking, we kind of take it on as our job to get you there without really thinking through whether you want to be where we think in the box we think you need to be in or not. And I think that's been a big one for me is even as a researcher, the number of studies that I started without anybody's input on and thought, all right, how are we going to help autistic people to get in this box? And boy, they were really unhelpful and potentially traumatic ways of thinking about research and clinical practice. So I think that is sort of the underlying brain rule that leads to a lot of other brain rules. Another one for me is what in terms of my views on self diagnosis in general when I first started hearing about people who said, you know, I self identify as autistic but I haven't gone through a diagnostic evaluation or anything like that immediately for me, well, then you're not in a research study. If you told me that as a nurse, then you don't have that and we're not going to put that in your chart and it's really insignificant to me. And now I look at that and think, wow, how much we miss the boat on collecting that information about people's own experiences and identities that, you know, it's a really paternalistic view to just decide we know better and if we didn't tell you that's who you are then you're not that and we don't put it in the chart. I think another brain rule is that our system works one way, one thing I'll say is like if somebody told me they prefer to communicate in writing, that's fine. So how can I support you in communicating orally because that's how we need to communicate? Instead of saying, okay, here's your writing, let's work off of that. And it comes from a good place but it's pretty messed up, frankly. And I think it comes from a lot of that brain rule education that we really enforce in nursing school still today. I think I'm trying to incorporate a lot of the things that I'm learning and how I teach nurses now but you can see it's still system wide that we really enforce this like here's the way we do things kind of mentality. And I think all brains belong to me as a beautiful example of throwing out the brain rules and what healthcare can look like. But I also, Mel, I mean, you deserve a ton of credit. It's been a lot of hard work. It's been a lot of starting from like the ground up and a lot of personal risk to kind of go against the system and the way that you've allowed things to operate at all brains belong. So Sierra and Mel, major kudos there. Another piece of that sort of like system building documentation, so when I was collecting a patient history all I'm thinking through is what documentation, what boxes I need to check. So you might be telling me a long story and I'm filtering it out to one box that I'm gonna check. And so a lot of that story got filtered through my perspective and then it's like a game of telephone by the time that the people who need that information hear the story, they've gotten this really watered down version where I've sort of decided what details are important. I shrink that down into what I can type in a note with the limited time I have and check a few boxes, that's it. So trying to think of like how to advice or like what I would like, I mean, ideally you blow that system up then you do it completely differently is the reality. But being on the patient end and not being always able to blow up the system and do it differently, I would say the biggest thing I can think of is if you have the luxury, trust your gut and if the provider doesn't feel like a good fit, then hop around until you find somebody who feels good. And I think that takes a lot of work and time and effort and it's not fair and it's not the way it should be, but I think that's the best I can think of with a system we have right now. The other thing, just one more detail, if there's time Mel, am I over talking here? I think we have, this is one I hesitate to say but there are a lot of stereotypes at least among nursing circles that I can think of. And I would go so far as to say it's discrimination that we kind of have these like quick judgments about certain things. And when I think about neurocompetent care and neuroinclusive care, it's not in alignment at all. So a couple of things that come to mind as to me used to translate to difficult patients, if you have a long list of allergies, if you have a long list of conditions, if you've seen a bunch of different providers, any one of those things, I see them on a history and I'm thinking, okay, this is a difficult patient, what are we gonna hear today? And so there is that point of judgment that comes into it. And again, it's not a point that I have like, this is what we can do about it, other than educating people to think differently and educating people on a different way of viewing those ways that we look at things. So often the people that have those long lists are going between providers because they're not having their needs met and they need to move around from different providers to get those needs met. And then we view them as difficult because their needs are on met. And we put that as almost a judgment on the patient instead of looking at that that person is probably the person who's had the most difficulty of anybody in the situation by a landslide. So those are kind of, that's my little list of things that I had thought of. Oh, that was thank you, Laura. Thank you for naming the things. Gabby's got a comment in the chat. I feel like that's a matter of compassion or compassion fatigue or burnout of the provider. Yeah, yeah. And I think that it's both, right? So it's the system driving the dissatisfaction stress, toxic stress on that pathway to burnout absolutely, Laura. Yeah, I just wanted to add that. So just like a quick insight into nurse experience on a inpatient unit. So I worked 12 hour shifts. I did three shifts a week, which was a great lifestyle. I had four days off a week, but a 12 hour shift is a long shift. And usually you'd work late. And the hospital that I worked on had what we called mandatory, if we were short staffed on the next shift, the nurses that work the day had to cover for the next shift. So very frequently I would work, we were half staffed for the last two years that I worked on my unit. So if you worked Saturday, Sunday, for example, you worked Saturday, 12 hours, the Saturday night staff would be short. So I would have to work a four hour block of Saturday night. So that might be the first four hours, the middle four hours or the next four hours. So potentially I could work Saturday, 7 a.m., 7.30 p.m. And then 11 p.m. to 3.30 a.m. Then be back at 7 a.m. to work until 7.30 p.m. that night and often mandated to work a 16 hour shift on that shift. So it was burnout central. And during that time, we used to have one nurse for every three patients and over the course of time that I worked there, we shifted to one nurse for every six patients. So it went up steadily over time. I'd never felt so burnt out and I loved the job that I was actually doing. I didn't have time to do it well. And it wasn't a matter of not caring. I just didn't have the tools to do that job in the way that I knew it had to be done. I was doing oncology and end of life care. So these are people who really needed a lot of support and I'd be running in to give them exactly, practically, physically what they needed and get out. I was not able to provide that emotional support. I was feeling really unfulfilled in my work. So when we think about like these things that are happening, I would hate to look at it as just that these are really crappy providers that aren't doing a good job. I can tell you, I think I was a good nurse. I like to think I'm a good person and I was doing a crappy job. And I know better, I'd like to see it better but we don't often have the tools to make change in that moment ourselves either. I'm so sorry that you had that experience and so, so many people have. And I think that they're like one of the brain rules that I am learning is that like brain rule is like, well, the system has to be this way, right? Cause that's how it is. Like that's what healthcare is. Like how it is here. Well, you need a lot of money. No, you don't, like, I mean, you just don't. I would say like, I prefer not to think about it as like, you know, backing up against the system. I see it more as like a parallel play of like, yeah, in order to be able to practice in a less restrictive environment and meet the needs of my community. This was about like, okay, let's ask about people. Ask the people what they need and balance that with what I need and what Sierra needs. Like, that's it. And I think almost like, I remember in training, like I saw that it was like hard and that like experiences like you were describing Laura were happening. And it's like, oh, well, it's a foregone conclusion that like, this is what it's like to work in healthcare. I'm thinking, I'm trying to like, to shift the order based of the panelists, just based on what comes up. I was gonna like sort of trade off of clinicians and patients. But I actually think that, so Dr. Rachel Lovens who just joined us but is driving and had made a video ahead of time. I'm gonna play, because this topic came up in our discussion. So I'm gonna introduce Dr. Lovens and play that video. So Dr. Rachel Lovens is a member of our Governor's Board of Directors. She is an internal medicine physician, certified physician, executive educator and professional coach. She has a special interest in training in medical ethics, palliative care, wellness, communication, equity and inclusion. She's also on the faculty at Dartmouth and at Yale and is currently medical director of a patient education and engagement company that uses micro learning theory to help people with different learning styles. And Rachel was kind enough to humor me in making this video. Hang on a second, I've already broken. Oh, technology. I know, this is something I don't like a professional screen share or culture of interdependence. Here we go. Well, I know this is something I think about all the time when we talk because I have learned so much from you, so much. And yeah, so just to get that part out, I think that learning about this, learning about neurodiversity as a grownup physician that's been practicing for a long time or just as a person, really more as a person to change my perspective so that I can identify different patterns and see it less as, oh my God, this person is driving me crazy because they're not like me, but like this person's brain works differently than me and that has many benefits and it causes me frustration. But if I can understand it better, then two things happen. I get much less frustrated. I also learn how to appreciate, I learn what I'm getting from this other person whose brain is different from me, I'm much more patient and just aids in communication, which is communication is sort of everything in the universe. Like in my mind, communication is all the things. Oh, that is. Yeah, and we can't get anything done if we can't communicate anything. Right, and we can't communicate if we are not regulated and it's just like a journey of self-awareness and then you can pattern matching other people. However, you cannot tell other people about their brain rules that is often triggering. But what is very hard is that there are, I think, systemic barriers to regulation, self-regulation as a physician, right? Like there are things in the environment and in the system that are constantly depleting my bandwidth and taking away from my ability to, not only is it like directly dysregulating, but it is taking, depleting my bandwidth, which is required to like zoom out, like have those, like use those metacognitive skills and perspective things. Yeah, the zooming out thing. It's so important. And yeah, feeling overwhelmed. Feeling like you don't have enough time. People with huge needs and you can't meet all of them all the time and you're the one that has to meet everybody's needs. Those are really, really hard. Having an emergency, it's, yeah. And then, you know, we're not given enough, the system's not set up that we have enough time, time to meet people where they really are. And I think we just need to do better. And it's almost like the, the dysregulated, I mean, it's a dysregulated medical system full of dysregulated individuals who are being dysregulated by the system. That's right. Representing with foot on the gas. I have to get the thing done and I gotta do the thing and this is how you do the thing. And you rely on these like, I'm just gonna like follow the thing. And that, that interferes with the zooming out part of like, hey, patient dying, family here, can I imagine? Like for me, if I walk into like, when I was doing inpatient care, like I'd walk in and like energetically, I would be like, something would transform to be like, like non-verbally feeling the feelings of the people in the room. And like that is going to guide like so much of my interactions. But like, if you are so dysregulated that you can't even like pause to do that, you just show up with foot on the gas the same. But you have to, you have to listen to communicate well. So if you're dysregulated, you can't. You cannot take in the other person. Yes. So how do you think that leaves out in your, in your life as a physician? Yeah. It's really hard for me to tease out my life as a physician from my life as a person because it's the same. Yeah. Me too. I was saying, yeah. I mean, cause it is all about like relating to people. So I just feel like I'm not in any way perfect in any way. I'm better at slowing down. I'm better at listening and waiting and being more open to paying attention to how is this other person communicating with me? And not assuming that my way is the right way or everybody's way, you know? I mean, you know, I grew up with therapist's parents and it was very like, this is the way you're supposed to communicate, right? This is the way you're supposed to talk about your feelings and it's supposed to be easy to talk about your feelings. And that's just not true. And it took me freaking decades to learn that. And some people need a whole day to figure out what they're feeling before they can tell you. So I would love it if you would teach that to me and other healthcare providers. How do you, when you're in that situation, how do you sort of gracefully do that with your patient, with your spouse, with your child, with your friend? And I totally, I mean, it's totally true, right? So if I'm not regulated, I can't hear anything you're saying. I'm not gonna integrate anything. It's gonna take me a week to like take that in and like really think how I feel about something. So, and then if two people are dysregulated, forget about it. So, you know, I, first off, I'm like the worst video editor that is not my zone of genius. But I wanted to end with that clip because Rachel, I think that's the key to the universe, like we, if we are dysregulated and we also don't always know how dysregulation presents in other people, that is where the chaos comes from. Like just bringing some transparency to that, I think is, like that I think will get us a really significant step forward. This is a part of what I was telling you about was, I was with this person that I'm really close to and she said to me, oh, I wanna let you know I'm not at my best today. So, you know, like, you know, I might be not as good at communicating with you as I normally would be. I don't know what the world would be like if as physicians, we could even say to our patients, you know, I'm not, I'm whatever we wanna say. I mean, you have to, you can't just say everything, but like permission to give a little bit of information about where you're at might do lots of wonderful things. Permission to be human, permission to be human. How screwy is it that's just not a given, you know? Not only is it not a given, but it is discouraged because what seems to be a professional is a brain rule. Like, it's, I was literally taught that it is inappropriate. Exactly, Laura's got in the chat inappropriate, unprofessional to self-disclose. Like you don't self-disclose like everything in the universe just the way that you don't self-disclose anything in the universe to literally anyone. It's really about like, I'm a real person. Like we're all real people. And then you create this culture where everyone is useful and everyone has value and everyone can show up authentically. David, sorry, you're raised hand blended in with your ceiling tile and I have the kind of brain that needs high contrast to see anything. Go ahead. No, I didn't want to interrupt you guys. I just do amaze how radical your model is for this whole thing. I think this is something that needs to be built out. I don't think it should be contained within just your practice. I think this needs to grow because this will serve so many more people. It's just amazing. Thank you. Gabby? Also in my car, as a provider of sorts myself, I think it's, and also like a young professional, like I have anxiety sometimes about like this pedestal that I imagine my patients are putting me on. Like I'm coming to my physical therapist and I'm going to get fixed in like four visits. It's just like that person might have walked in with something I've never seen before. And now I'm just like panicking internally because like these people are going to expect me to like have the magic wand and like all these things when like probably that's maybe half true and then half, you know, over projection. But so I think at the same time though, like when if I go to a PT for specific or a provider for specific thing, like I want them to have like those answers, you know, it's like, so it's almost like this double standard. But then as a provider, I have the con like myself, I have that context and that like experience to know like, all right, like I might not walk out of here like with exactly what I want, but like if I feel heard, if I feel like that person was really thinking about what I was talking to them about, then if I have really good follow-up with them, like those things almost matter as much, if not more than if I walked out of the office feeling like, they said these three magic words and you know what I mean? Like, so I think that's, it's just like when I was listening to Rachel speak, I was like, oh gosh, like yeah, that I feel like that anxiety kind of translates, can translate on to the healthcare professional. Yeah, it's okay to say you don't know something. Cause how are we supposed to know everything? Right, it's a brain rule that would possibly know everything. It's a brain rule that, yeah, yeah. So Laura's gotten the chat, another brain rule of both providers and patients, but it shows incompetence that we don't know about something. I mean, what I, it's also like just like basic customer service skills is like, I don't know the answer to your question and I will work with you to learn about this together. Like, I mean, that's, like how could that not be true? And I think that what I see in this practice is that why the brain rules world rules thing helps me is that it helps me decide like strategy and approach. When I recognize that someone has a brain rule, I do not challenge it. I skipped around my slides earlier cause I was just like throwing all the things together. But usually when I talk about this concept, it's about like, brain rules are cognitive self-regulation. They're like the things that you make up that make your world make sense. And you don't violate people's sense of safety. Like a world rule, they're gonna foot their lids. So yes, Sarah, and then I'm gonna introduce you. Go ahead. Oh, that's not, it's a yellow smudge above your head. It's not a yellow hand being raised. It was like a tag on the thing. I can talk if you can talk. No, I was gonna introduce other Sarah that had yellow, but I can introduce, I can, so I'm gonna introduce other Sarah first, hello. So Sarah Knudson, they are an ABB patient and 20 years prior to now, 20 years ago, Sarah has worked as a therapist serving Medicaid clients with Catholic Charities, Bill and Maria in Maryland, as well as in domestic violence, substance use, and LGBTQ settings. They have also served as the director of a mental health wellness and recovery center that was run by and for the peer mental health community. And after moving to Vermont, they helped set up the Vermont support line. Sarah, thanks for joining us. Oh, thanks for doing the work you're doing, Ellen and everybody here. Just the conversations here are just extraordinary. And I think that's one of the things that's so healing too about just being a part of this community is just the conversations and the variety of input and the variety of brains that are really thinking together about these important issues and really huge systemic challenges. I guess for me, my experience as a, I mean, I was in a mental health services since I was a teenager. And eventually, I was a brain-y kid and eventually by the time I'm 40, I figured that I'm never gonna get to the bottom of this thing unless I figure it out myself because I see other people using the mental health system to get better. I'm not getting better. I don't know why, but anyway, so I go to graduate school and get a mental health degree and then start practicing. And so I'd carry with me at that time, sort of both the client perspective, which is fairly ingrained as well as the, and I'm gradually being taught the systemic perspective. And I guess what strikes me as really troubling, I guess, in the arena of mental health is to the extent that I think that what we're really trying to do is it's about that a lot of this stuff is about really relationships with other human beings and that a lot of our needs are co-regulation with other human beings. Most of the stuff that the way that we're going about it isn't really set up to set up the kinds of relationships that I or other people would necessarily find co-regulating. And I mean, if I treated a family member, if I applied the same brain rules to family members that I applied to, that I was taught, they were taught to apply to mental health clients, I would be damaging those relationships beyond repair. So it's almost like we're, and the idea of the first time I meet you, I do this huge long intake that asks you these incredibly detailed questions and you don't get to talk about your problem because we're way too busy doing an intake, you know? And I know for myself that actually at one point in my life that put me under, I came carrying such a traumatic issue with a therapist and we spent three sessions doing an intake and by that time, I had broken down. By the time we finished the intake and it was just, I needed to share what I came to share. And I think other things that are really troubling is the mandatory reporting stuff. And I don't know, I mean, I can see that there's benefits but the harm to self or others, the abuse reporting, what that effectively does, the harm that that does. And I'm not saying that there aren't good public policy reasons, but the harm that there's also real harms that come out of those kinds of policies, those kind of systemic brain rules is like, what that effectively means is that there may be no one in my world who I can actually trust to be fully in my court, fully on my side helping me make a decision without an allegiance to someone else. So unlike an attorney, in fact, it's safer for me to go to an attorney and with those kinds of issues than it is to go to a therapist if I have those kinds of issues. And I think the other pieces that so much of like the treatment plans and other things are, they're based on the assumption that life, that human beings are organized in kind of mechanical ways. Like you put ingredients in and then out comes a product. And what I think, but from what I've read much Rana and somebody, it's some tree of light, a Shambhala publication. And when I started to just try to say, well, what is the nature of life? And the theory is that life really organizes itself from within. So we're gonna have 37 trillion cells and each of us are organizing ourselves from within in our own unique way to make our system work. And then there are these impacts from outside. But so there's no f-ing way that I as an expert can organize, I as a quote unquote healthcare expert can be an expert on what your 37 trillion cells or how your 37 trillion cells are self organizing. It's just not, I mean, I just, I mean, my conscious window on the world is like six things. If you look at what our working memory can hold. So something in you is holding the roadmap for how to operate 37 trillion cells. And I here can keep in track of six things at once. There's just no way that I can do it. And that also suggests the mismatch between like if I only get an hour with you rather than, and if I only get to see, also the other problem was with therapy. I started going out the way I actually left for peer support in a lot of ways was the peer support didn't require, I just, it became really apparent to me with my clients that a lot of the issues that were really troubling people were not things like, were not like, they didn't, it wasn't that they needed to talk to me more. It was like they needed access that they couldn't get the systems that were supposed to help them to work for them. So I had to be going with people at the food bank and social services. And I sort of just did this wraparound care, which, you know, technically I can sort of fit into a treatment now, but it was always really kind of dicey, could I go? And then the, and, and, but when I would do that, I would learn so much more about people and about like, it's one thing to talk to somebody in an office in this nice safe environment and people talk to me one way in an office, they talk to social services totally differently than they talk to me in an office because they were upset at social services that was treating them like crap. And that was a very different conversation. And, and then that sort of just to extend that to what I learned in the peer community. Once I, once I, once I sort of joined and said, I, me too, I'm, I'm, I'm this thing, the conversations we had where we were just sitting around at center, I had no, so a lot of my clients followed me over to the peer community. I had no idea how much I didn't know about their lives until all of a sudden we were hanging out at the peer center. I mean, I just, you know, people told me things as a peer that they never told me as a professional. And so as a professional, I thought I knew people and I thought I had the full picture. And it was just like, I, I, I wasn't spending time with people because I didn't, I, and I didn't really know people because I wasn't a part of their lives. It was only when I joined the system and became a part of people's lives that I actually knew what was happening for people. And, and the biggest thing I learned was when I started to organize a suicide group, I started to organize suicide groups for people who, like online before, before, before COVID, I started to organize online peer support suicide groups and, and, and basically online mental health, like alternative for people, for people who are hearing voices or other stuff. I mean, it was just like, if the system isn't helping you, come join our, come join our line. And I get to people, talk to people around the country, around, around, in some, internationally, the conversations we had on that line about the diversity of issues and the diversity of things people were going through were just fascinating and stuff I could never have accessed as a provider if I had to wear my provider hat. And so that was the trade-off. And that was really the provider brain rules that kept me from actually learning what was going on with people. And the catch 22 for me is, well, now that I'm not like a provider and wearing a provider hat, no, none of the providers give a shit what I learned in like five years of talking to people around the, around the country and internationally about what's going on. They don't care. So that, that, that, but, and so it's like that status thing locks you out. But, but the providers don't actually, people who, if I had stayed in my provider role, I would still be thinking, I knew all this shit that I didn't have a clue what people were facing and what people really felt and what people were up against. So anyway, that's my experience. Thanks for listening to it. I love your brain. And in like full transparency, like I didn't know half this stuff about your experience. It's despite having spent a whole ton of time with you, right? So it's about like, when you break down that arbitrary distinction between health and the rest of life and you bring community together, you like, yeah, that's how it goes. Yeah. David's got in the chat, people built the systems we have, right? People can build new systems, right? That's the brain world, world rule thing. Like brain rules are human made. And they're everywhere. Rachel. I hope you can hear me. It's a tough, it's tough because the other side of it is that boundaries are very important. So, you know, there's a whole bunch of stuff going on right now with psychedelic assisted therapy. And it's incredibly effective. But there's all these stories about therapists who used it and had poor boundaries and it could be traumatizing to the patient. So I love everything I just heard and it's amazing. And the way we can connect to each other when we don't have those arbitrary rules, but boundaries are also important. So I just think it's tough. Rachel, I think that that example, I would say that it is a world rule to violate people's boundaries, right? Like making any other people feel unsafe. That's, you don't do that. That's a world rule. So I think that it's about like the nuances of what is it like to be human and be transparent about access needs, which is that we all have them. I don't know, what do you all think of that? Like is it all or nothing? Definitely not all or nothing. I don't know, like I'll stop talking to you a minute, but you know, Brene Brown and all of her work on being vulnerable and vulnerable. Right, and it's been a while since I read her, but I remember very much her talking about the importance and the deep importance and beauty of being vulnerable and how it's a strength, but you can't do it without boundaries. Yes, boundaries are important. So I would, go ahead, Sarah, yeah. So I would just challenge, I mean, I would just challenge Brene Brown a little bit because I don't know that Brene Brown has ever sort of switched hats and gone over to the peer movement and lived in the way that the adult movement is organized, which has its own way of thinking about boundaries and its own way of thinking, I mean, certainly the idea of taking advantage of other people is, I mean, I think that the question is whether people are taking advantage of other people or not. And I just, so I, but I'm not sure that, I think in order to have an intelligent discussion about what boundaries are good for human beings and what boundaries are actually help people, help people grow in relationships. That those conversations really could be had between the peer and the provider community and with us both listening to each other, I think we would find that I think there are, I just think that the provider community has decided what boundaries are maybe good for providers. And I personally haven't found those necessarily good for my relationships or my understanding of other human beings. Is it a world rule that individuals maybe get to set their own individual boundaries? So, yeah, maybe that's a way of splitting the difference there. Rachel? I want to correct myself because I think the boundaries that are needed when you're in the role of provider are very, very different than the role of peer because it's all about power differential. So, if there's no power differential, then it's a whole different story. Yeah, that's an interesting point. Yeah, absolutely, I mean, absolutely. And I think there's a question about that power, I mean, again, there's a question about the power differential that sometimes is actually damaging to the relationship and the way that the relationship goes. And that many of us have found gets in the way of speaking what needs to be spoken, gets in the way of connecting in ways that can potentially be life-changing. And so there's a real question about, again, I think that, yes, boundaries need, when there's, I agree that boundaries are even more important when there's a power differential and I would question whether the provider brain rules on power differentials are actually helpful to the relationships and to the healthcare that providers are wanting to provide. Yeah, and I think probably there's probably some of both. There's probably, like, it's probably not all or nothing. I agree, I just, I don't have the answers. I'm just saying that I personally have had experience on both sides of the, I have both have had both experience on both sides of the couch and on both sides of the being connecting with people in both ways. And I think the model that the peer community has set up for interacting with people combined with the experience that providers have could be potentially incredibly powerful and possibly way more powerful than what is currently happening in offices behind closed doors. Right, and I think that, and the fusion of both, right? So, and not all or nothing, but rather than, like, is there a brain rule to be like, that over there, that's separate. Yeah, that makes sense too. Yeah, yeah, absolutely. Sorry, I'm not meaning to polarize, not meaning to polarize, just meaning to just would love to invite a deeper conversation and deeper consideration of the issues that to me feel like my own experience has been that I actually get a lot more out of the peer relationships than I necessarily can get out or I can get potentially a lot more out of the peer relationships than I can get with provider relationships, although that's not universally true, but it can be. Yeah, Rachel has in the chat that she thinks that your comments, this whole thread is a fantastic challenge and love this topic. How can I learn more about the peer support community? Intentional peer support is a great, I mean, that's a great, that would be a great place that it's a Vermont organization, that would be a great place to make a contact. Probably Pathways Vermont is doing quite a bit of peer support. Another way is trying to get moving on doing that. I'm happy to talk more and see more what you're wanting to learn, so all of the above. Awesome, so this has been such a powerful conversation. I just wanna open this up to anyone in the crowd. Any comments or questions or anything coming to mind? So I wanted to just speak about my experience with the vaccine clinic with my kids. I first learned about all brands belong because of the vaccine clinic back in December and I have a seven year old and a 10 year old, neither of whom have a diagnosis. And one of the things that I loved about the marketing for it was that it was really clear this was for everyone. This wasn't just for certain people that had certain diagnoses. It was just anyone who could benefit from getting the vaccine in this way was welcome to come. And it was a huge paradigm shift for me because I had never even considered that something like a vaccine could be done in the way that all brains belong presented it. So the ad said something like, we can come to your vehicle and do it at your car. We wanna know what your child's special interests are so we can connect with them on that while we're doing the vaccine. Just all these different things that were presented as a menu of an options, as a parent seemed like, wow, how cool would it be if this is how it was every time I took my child to the dentist or the doctor to have such a customized experience. My oldest child had a lot of medical issues from the time he was an infant until well through his five year old year, we were constantly at doctor's and dentist's office. And it didn't really work very well for him. A lot of times I felt like physicians talked down to my child and just sort of didn't really look at a child as being a person. There's sort of just like a dynamic of I'm gonna tell you to do this thing and you just need to do it. And my kids are both very curious and wanna know why. Well, why do I need to do that or why should I do it this way? And so to be able to express that on a form ahead of time and share a little bit more about my child, their personality, their temperament, what they're interested in, just meet it such a lovely experience. We literally pulled away from getting the vaccine and both my kids said, well, that was fun. Can you imagine like getting a vaccine as being like, well, that was fun. But that's how it was for them. It was such a positive experience and how amazing, yes amazing to not have it be this traumatic thing where some adult was like, pull your sleeve up kid, I'm gonna jab you now, you know? It was just, it was so personalized and so unique in my experience, you know? And so I asked my kids, I knew that we were going to be talking about this tonight at Brain Club. And my seven year old said, I said, what did you think about the vaccine clinic? And he said, the vibe is way calmer than a normal vaccine. That was his actual quote. And my 10 year old said, I love that I could bring my plushies, even my really big one. So he has like this giant duck that he loves. And, you know, it's not the kind of plushie that you would like bring into a doctor's office and during COVID, do you really want to bring like your favorite plushies into the doctor's office? And so to be able to do it out of the back of our vehicle, while we were like holding our children and they were holding their favorite levies and they were in their familiar environment of the back of our vehicle, it just made for such a different experience than if we had gone into a brightly lit room and sort of like David was saying with the Seinfeld quote, you know, like you're waiting and then you're going to another room and you're waiting and that's hard for children. And so to just pull up, somebody greeted us within minutes, somebody came out, like it was a well-oiled machine and it was the first time they had ever done it. And so that experience was so special to me that I actually wanted to get more involved with all brands belong because of that experience and started helping out with the kid connections program and finding children with similar interests to match together and volunteer coordinating. And, you know, I'm really excited about what Mel has started. And I grew up in the state of Vermont and there's never been anything like this to my knowledge, nothing that's so customized and willing to flip mainstream on its head and say, let's look at this from a totally different angle, sort of scrap it and look at it differently. And so, you know, it was just a great experience and I really think it's, you can replicate it. You can replicate this model. It's not like, oh, was this really crazy thing? And, you know, it's only this one practice that can do this. You know, like Mel was saying, a lot of it doesn't even cost money. You know, asking the child what their interests are and connecting with them on that, but does it cost you any extra money as a provider? But man, it makes it a different experience for the kid. So, yeah, so I just, I wanted to just share my experience as a parent as somebody who came in and it's not an ongoing patient of all brains belong, but, you know, just had a really awesome experience. Oh, I love that story. I love that story so much. You know, because like, and I remember, I forgot there's a journalist who asked me like, so what do you do at the Vaccine Clinic? Like, we literally just ask the people what stresses them out and we don't do that. And then we ask them what comforts them and we do that. Like, that's literally what we do. It's it, it's free. Like the first, like the first Vaccine Clinic you came like, I mean, I didn't know how to staff. Like I was a volunteer position and like we just like, like, like we had all these like amazing community collaborators who were like, that's cool. I'll help you. I'll help you. And like, you know, and you brought the people together. You brought the community together and just like did what made sense. Which is, cause it, cause like, I remember even in medical school, I remember being told that it's like normal for kids to like scream at healthcare appointments and like, I remember as a medical student being like, that can't be a thing. Oh no, it's a thing. No, it's not. It's a brain rule. So anyway, that, Gaby's got in the chat, how do we show young slash future clinicians what ABB is doing in this model? We've had some medical students come do rotations and like come volunteer and we're always, we're always happy to talk with anyone. And in fact, tomorrow, oh, it's tomorrow. Tomorrow is our virtual open house at five o'clock. We do this every other month. And like that was an example. I was, I forget who I was talking with earlier, but we talked about like, well, the conflicting access need paradigm. Like what, like, how do you do that? Well, like virtual open house was a way of negotiating conflicting access needs. So because of my auditory processing and my doing all the things, and there's just no way that I could do a phone call with anyone who wants to talk to me, like wants to learn about the organization. And yet, not everyone can email. It's not accessible. Not everyone can use our secure text messaging. It's not accessible. Sorry, so some people want to have a conversation. Well, conflicting access needs, how are we gonna do that? Well, we created virtual open house. And so we do that every other month. I think this is our third one and they're great. And people get, people meet their own access needs. And I need mine. So, and then you're not having the story of like, Laura talking about like the 12 hours and the torture. Anyway, it doesn't have to be that way. And transparency is the way out of chaos. Like, I tell every open house it's not a perfect system. Like, yeah, if I did the usual things and like take out a loan and hire like a huge staff, like, I mean, just we don't have that. And so there is a finite capacity of what we're able to offer in this current form. And it's okay. And it's like informed consent of like, this is what this is like. Hi, nice to see you. Yeah, go ahead. We are, yeah, thank you. My name is Matthew. Just to go on what Mel says, we are in a unique paradox of what our minds can do and how other people look at our minds in their own specific way. But how to understand our minds is how to, you have to have that connection piece. And like what everybody says, the way I interpret what you're saying is, you know, we're in a unique, you know, position here to not only spread the word about what we're doing, but who are we, you know, sharing it with, you know, because the way I look at it is, you know, we're basically setting course, navigating through tough waves of uncertainty with the COVID-19 crisis and pandemic and new variant that just, you know, that you just found. It's just, you know, the way that the healthcare system is right now, it is totally uncertainty at this point because it's a way to make our case, but also it's a way to broaden what we're trying to do because as someone that a self advocate myself, but also sees it from an insightful point of view of the whole medical system, yes, there is disparity in the medical system. Yes, there is inequality in the medical system. Yes, there is discrimination in a medical system, but the way that other, you know, professionals, you know, see it as it's normal, this is not normal. This is us trying to make that pitch sale to them saying, hey, our minds may be different, we do things differently, but yes, we're gonna say what we need to say because we are human beings first, treat us as such, you know, because what we say could help you save lives. What we say could help you protect other people from, you know, tragedy or help them with a mental health, you know, crisis or mental health breakdown. We have to make sure what we're saying is does not as negatively impact the patients we, you know, serve to as well. It is not just a one way communication. It's a motel faucet factual communication. And what we have here is something that, you know, that could actually have the language actually easy to convert for those others to basically understand and actually to acknowledge. But thank you, Mel. Thank you, Matthew. And, you know, it is a world rule that when we have, you know, we have, not only do we have robust data of inequity, but if you listen to the people and they say they don't feel like their needs are getting met, guess what? Their needs are not getting met, that is a world rule. So, yeah. So... No, sorry, no. And world rules do not work for everyone, literally. World rules do not work for everyone. It's inaccessible for world rules. We have our own rules within our mindset to actually share about what our mindset rules are. What's in our mind actually? What's in our heads? How can we translate it to a way where it makes no sense for you? And usually, my rules triumph over world rules. Thank you. Thank you, Matthew. And I just wanna, I'm running out of time. I could talk about those all the day. But maybe I should also eat dinner and you should all do whatever comes next for you. So, I just wanna make sure to create some space for anyone who has, especially anyone who's not been able to participate yet, who had questions or comments. Feel free to unmute or type in the chat. Okay, well, I really appreciate it. Thank you so much to all of our panelists and to everyone who has joined us today. And we will, and thank you to Orca Media. And we will look forward to seeing you at... And we'll see you at virtual open house tomorrow. But if not, we'll see you next week for Brain Club, where we will be taking on the brain rules of education.