Born to Be Free Podcast
 Episode 7 with Dr. Mel Houser 

[Introductory music; child singing]
Kids are born to be free. When you grow up, still wild and still free. 

Meg:
I am so excited to welcome you to this conversation with Dr. Mel Houser. Mel's story starts with them as a deeply hopeful med student who has to quickly confront all of the ableist and dehumanizing parts of our medical system. But what they did next is truly remarkable and provides a template for all of us who want our work to help our neurodivergent clients thrive in our communities in the most meaningful ways. Dr. Houser's work shows us how to find the barriers, dismantle them, and create something new. 

I'll tell you about our guest. Dr. Mel Houser is a family physician and founder and executive director of All Brains Belong Vermont, which is a non-profit organization in Montpelier, Vermont, with a mission to support the health and belonging of people with all types of brains. All Brains Belong has pioneered an innovative model that integrates medical care with social connection, employment support, and community education. 

Dr. Houser provides neurodiversity-affirming training to healthcare practices and workplaces around the country about how to create environments where people with all types of brains can get their needs met and thrive. They are the author of the upcoming book, 'A Failure of Imagination: How the Healthcare System Fails Neurodivergent People — And What We're Doing Instead'. Here's the conversation with Dr. Mel Houser. 

Hi, Mel. Welcome back to the podcast. 

Dr. Mel:
Thank you so much for having me. 

Meg:
Yeah, it's always so much fun to sit down and talk to you, and I always learn so much. And I'm going to start by quoting you to you. I've got to read the very first paragraph of your book. So, here's what you say: "You can follow every rule and still cause harm. You can show up with compassion, with training, with a genuine desire to help, and still leave someone worse off than when you found them. That's one of the hardest truths about working in healthcare, and one of the hardest truths about receiving care, too. When that harm becomes routine built into the system itself, it stops looking like harm at all. Instead, it just looks like how things are. We tell ourselves the system is broken, but in reality, it's working exactly as it was built to work — or not to work."  

Dr. Mel:
Okay, I'm crying because I've actually never heard any part of my book read to me back before. That was so meaningful. Thank you for noticing that and sharing that. 

Meg:
I'm auditioning to be the narrator for your audiobook. Just kidding. Okay. So, from there, you go on to talk about why you became a physician. You say, quote, "I want to be a person someone can go to when they don't know what's going on with their body. I want to be someone who can help them make sense of it and not feel alone. That's what I thought medicine was all about." So, Mel, let's just start there. How did you go from that optimistic med student to who you are now, someone who is visioning, creating, and sharing a truly inclusive but counter-cultural approach to medicine? 

Dr. Mel:
Yeah. I mean, so that last part that you read was an excerpt from my blog that I wrote as a first-year medical student, as I was getting started, right? And so, I didn't — I knew what medicine was in terms of the role models that I had and some of the beautiful moments that I had the privilege of being part of as a student. 

And I think that when, as time went by — first off, like when I started, I didn't know anything about brains. I didn't know anything about my brain. I didn't know anybody else's brain, like, this was just not on my radar at all. And then, a few years into practice all these years later, and I became the parent of a multiply neurodivergent child, I learned that I myself am Autistic, ADHD, dyspraxic, dyslexic, dyscalculic, all the things. But also, at that time, I think neurodivergent patients were really kind of gravitating toward me without either of us knowing we were neurodivergent, as that happens. 

And so, as I started seeing the ways in which the system was failing neurodivergent people, not just in healthcare, but in like all the places — I was spending all my time in the exam room problem-solving life outside the exam room. And I became intolerant of those ways in which the system was failing neurodivergent people. And so, things that made no sense, sort of the arbitrariness of some of the bureaucratic natures of healthcare, and really, the distinction between the healthcare system and the people in the trenches trying to do the things for people, like, and the ways in which nobody — not nobody, like, a lot of people didn't question that. 

It's like, "Oh, this is how we do it. This is how we do the thing." I just, I think that initial optimism combined with Autistic systems thinking and honestly, PDA rage, I just couldn't keep operating in that. So, I just needed to break free of the constraints of traditional healthcare, and truly partnering with our community to actually understand what people really needed, and wanted, and thinking what ideas we could put together to build something new. 

Meg:
Yeah, when we talk about Autistic strengths, I think the ability to see systematic failure and say no to it is something that just is so important and so under-represented in our world, I think. I am involved in a lot of activism locally, and I always ask people things like, "How did you start to care about immigrants? How did you start to care about Palestine," right? Or things, anything, because people seem to, by default, only focus on what's in front of them and around them, and there have been very few instances that the answer isn't, "I'm Autistic," just anecdotally. 

Dr. Mel:
Wow! Oh, yes, that makes sense. Right, and you think about the ways in which Autistic people often get into trouble with that involuntary, nervous system response to things that are unjust, right? And just, like, "I can't tolerate this. This is not right, and I'm gonna involuntary, automatically have a response to that." And so, and that shows up not just in healthcare. It shows up in workplaces, just all the things. 

But yeah, that's a real strength. And when there are opportunities for that strength to align with, especially when you find other people that are working toward a similar goal, as opposed to you being the only counter-cultural one, you know, naming the thing that is right and true that the neuronormative culture can't acknowledge. 

Meg:
Yeah. And I just want to name for people who are listening and they're like, "Ooh, that's not me," that there's a role for everyone. I am not Autistic, but I share this trait of I cannot work in systems that don't work, and could be better, and that are unjust and unfair. We wind up working for ourselves, don't we, Mel? 

Dr. Mel:
Totally. When we can. 

Meg:
We make our own systems. But there are a lot of other people who can practice early intervention, speech therapy in the preschool, and see all the things that are wrong and do their best to show up for the kids in front of them, and those people are important, too. I'm not good at that, but it really, really matters, folks who are on the ground doing the work inside of the system, too. 

Dr. Mel: 

Definitely. And the non-Autistic allies that I see in various environments, school and beyond, I think that sometimes people who also are applying their strengths of perspective-taking, adapting communication to be, you know, maybe the oblique angle that strategically lands with an audience that really doesn't get it. So, it's really the team collaboration. I'm not a, like, that's not one of my strengths, and I think over time I'm losing that skill of adapting my communication to the oblique angle. So, partnering with allies who have that strength, I think that's also part of systems change. 

Meg:
Yeah. I love this. I love this unplanned spinoff conversation on the role we all play in systems change. One of the things that you really center in your work that isn't — it's not something we go in expecting, right? A primary care physician, we don't expect to see a lot of emphasis on social connection, but you do. And your book — your practice centers it, your book centers it. Can you talk more about social connection and why you've spent so much of your professional energy around this? 

Dr. Mel:
Totally. When I was in traditional primary care, I could feel that my patients were deeply lonely. I could just feel it sitting across from them. And honestly, I didn't have a lot to actually offer for that. I remember this one time, you know, closer to the end of my time in traditional primary care, I was seeing an eight-year-old Autistic child whose monotropic focus was Pokémon, and that's all he ate, slept, and breathed. It was Pokémon. But he had no friends, and he was getting bullied at school, and like he'd come in dysregulated and, like, that's the problem. It's the loneliness. There's no medicines that are gonna make this okay when you are harmed socially. And then, I went to the next room, and there was a nine-year-old Autistic child whose monotropic focus was Pokémon, who had no friends, who was getting bullied in school, like, all of that. 

And I just, like, just it was so clear to me that the most therapeutic thing that I could do is introduce those sweet little loves to each other. But the traditional healthcare system doesn't let you do that. And so, it was like, huh, well, this seems like not that hard. Why don't we build a model where people can get accessible medical care, where they can show up authentically, and name what they need, and get what they want, and we can talk more about, like, what do we do, what does our actual healthcare look like? 

But also, we can have community programs that people can opt into if they are looking to connect with community. Like, this can't be that hard. And so, we thought through the rules. How do you stay HIPAA compliant? How do you offer things as options that people can opt into that are distinct from medical care? 

And so, that was the original design of All Brains Belong, my non-profit organization, the idea that we really wanted to have something to address this, you know, deep isolation that so many people were experiencing. And the ways in which that evolved is that, you know, really thinking about, here's a human; what are all the ways we can wrap around and support this human and move obstacles out of their way? 

And so, it's like you come, you join a community, you make friends, you maybe get some support for employment. Maybe you — maybe we're also — maybe your employer is getting neurodiversity training to really, you know, understand how do we build systems where everyone can do their best work. 

Meg:
Yeah. I imagine, as a physician, that's a harder in, but this came from listening, right? This came from listening to your patients. There's not a clear, well-established pivot into providing social connection opportunities. But as I'm listening, I'm thinking about OTs, SLPs, school psychologists, like, all of us working in the schools, working in the community. There are a lot of pretty easy ins for creating social groups, creating clubs, creating those sorts of opportunities. So, I'm kind of like wow, if you can do it in that setting, we can all do this. I had — I've mentioned this before, but I had a middle school Lego club when I worked in the schools, and it was Autistic middle schoolers who built Legos together. 

Dr. Mel:
That's amazing, right? So, that is centering the Autistic cognitive style of monotropism, right? So, if my thing is Legos and some other kid's thing is Legos, that is going to be a much more authentic way of connecting. 'Cause the thing that's in my attentional tunnel is also in yours, and we both care about this thing. 

Meg:
Yeah. Yeah, and this is true for ADHD-ers too. I think about my nine-year-old ADHD-er whose monotropic focus is the Rubik's cube. And any kid or adult who will tolerate learning about or especially is interested in learning about is, like, deep, rich connection immediately. 

Dr. Mel:
Yep. 

Meg:
It doesn't matter who you are. 

Dr. Mel:
Totally. Yep, exactly. Absolutely, yeah. And we know from the research that loneliness has the equivalent impact on health as smoking 15 cigarettes a day. So, when you think about showing up in the ways people come in, like they come in with their immune function not being optimal, or digestive symptoms, or headaches, or brain fog, or pain, or fatigue, it's just like it's such a part, like, this nervous system response to being in a world that's not designed for you and that you don't have anyone in your life who gets it. 

And so, back to what you said about listening, we asked, for example, we asked kids, "How do you think we could help kids feel like they belong?" And a nine-year-old sweet little love was like, "You let us do what we love." And that's really what you're describing. Your child loves Rubik's Cubes, that's what he loves. And some other kid who loves Rubik's Cubes, that's what they love. That's gonna be a connection. 

Meg:
It is. It absolutely is. 

Dr. Mel:
It doesn't have to be hard. 

Meg:
Yeah. I hope, just from this part of the conversation alone, I hope people, what they take away is what does it mean to deeply listen to the needs, the underlying needs. Even the things that people can't quite say, but you can feel underneath all the things they're saying. And to feel empowered to create new opportunities, right? Not the disempowering, "I just do my session and bill for it," but what agency do I have to create more access for my neurodivergent and disabled clients? 

Dr. Mel:
Totally. 

Meg:
So, in your book, you share an anecdote from your journal. And this is a day that you were shadowing and you were a first-year med student. And you wrote, "There is a woman in the exam room and she's holding her toddler and trying to explain why she hasn't given him the antibiotic the doctor prescribed. Because she is broke, because she couldn't take the day off work to go to the pharmacy and lose her job, because she knows her child's body and thought he would get better on his own. And I am sitting here watching the doctor scold her." Can you talk a little bit more about this and your journey through being a human and being a physician, and what practices you have that help you really see your patients' humanity? 

Dr. Mel:
Yeah, I mean, that scene is just so hard to think about. I still remember it. I have chills. I didn't have language for this at the time. I have language for it now that I'll use, but I just deeply felt in my body that that was wrong. Like, that's my — like, that is wrong. I, yeah, I mean, now I have language. That scene is really about medical patriarchy and white supremacy culture, right? These are patterns that operate even when nobody in the room is consciously being racist or sexist or — it's really just, I think, so embedded in medical culture is about whose knowledge automatically gets treated as authoritative, as expert, and whose gets waved off. 

So, I guess, rejecting the whole hierarchy of all the -isms and elevating lived expertise as equivalent to medical knowledge. So, anyway, I think that talking about these concepts, naming them when we see them, like, trying to understand the historical roots of how did we get here. And it doesn't need — it doesn't need to be this way. I think that one example I could give was that when we first started All Brains Belong, patients were showing up — and we've talked about this on the podcast before — people were showing up with this pattern of intertwined medical conditions, and in ways that were, like, much more common than we were expecting. 

We knew there were conditions that were more common for Autistic and ADHD patients. We didn't understand that close to 90% of the practice would show up with things like hypermobility, mast cell dysfunction, dysautonomia, migraine, endometriosis, IBS; like, all these conditions that are intertwined. And so, when we were seeing so many of these sort of hard-to-categorize symptoms that people had been describing, and then we didn't figure this out on our own. We brought a task force together. We had interdisciplinary clinicians and patients really concretely elevating the wisdom of lived expertise. 

And that's how we, the 'Everything's Connected to Everything: Improving the Healthcare of Autistic and ADHD Patients' resource, free resource, that listeners can check out. We built that as really a synthesis of what's in the literature, what's the evidence base, what is the clinical experience in managing these patients who have overlapping intertwined conditions, and what is the experience of patients? And that's putting all of that together. That's what we should be doing. We should not be shaming and blaming patients and, you know, the things that go on out there. 

Meg:
Yeah. Thank you so much for sharing. And it happens without us realizing it. The content that I refuse to take out of my trainings, even though I think there are people who would sign up if this wasn't in there or, you know, all the people who would hire me if I didn't have this content, is about being able to look at and care about people's identities, and look at and examine our own biases. And people wanna skip that. And when we skip it, the ruptures still happen. We just don't see them. 

Dr. Mel:
One thousand percent. Yeah, it's just like energetically when you are subconsciously ascribing superiority to a group of people over another group of people, that's bad for everyone. And so, whether it's in healthcare or workplaces or whatever, part of building a world that works for everyone is that you do the work of examining your unconscious bias. 

Meg:
Yeah. I was just talking to my husband about this yesterday as I was updating slides and thinking. I said out loud, "It'd be so cool to see workplaces in which white people were talking to each other saying, 'I'm looking at this case and trying to make sure I'm not bringing an anti-Black bias. Can you help me think through this?'" right? if we were having those conversations, there's only something to gain from it. 

Dr. Mel:
Definitely. And I've seen workplaces locally where that's part of the culture. Like, okay, part of building a workplace that works for everyone is that we look at, you know, like an equity audit of thinking about all of the places where people are shut out, the people who work here, the people we interface with. Like, where are all the places? 

Meg:
Yeah. 

Dr. Mel:
And little things, like even if we're gonna have a slide, you're talking about slides. What are the images looking like in my slides? Are they only white people? 

Meg:
Yeah. Straight people. Yeah. 

Dr. Mel:
Totally. 

Meg:
I don't usually talk about TV, but this came up in the conversation yesterday that we had been watching The Pitt, which is a medical drama. Did you watch it? And there's an episode where a provider says to another provider, "I wonder if you didn't do a pelvic exam on that patient because you treated them differently 'cause they were in a very large body. I wonder if their body looked different, if you would've done it." And the person said, "I don't know that that's true, but I'm gonna think about that. Thank you."

Dr. Mel:
What a great response, right? 

Meg:
Mm-hmm. 

Dr. Mel:
An openness to examining one's thoughts and processes, and getting feedback. You get feedback like that, and when I think back to my residency training, I had a faculty member who explicitly trained us on accepting feedback, like, actively receiving feedback in terms of, "I'm gonna try this on. I'm going to probe for additional evidence. I'm gonna talk about this with people I trust so that I can then appraise, you know, is this feedback that I'm gonna actually internalize, or is this feedback I'm gonna say, 'Okay, I'm gonna leave this here. That really doesn't apply to me.'" But you have to do the work in at least being open. 

Meg:
I love that. And then, being able to name out loud, "I'm gonna think about that and see if that does apply." 

Dr. Mel:
Yep. 

Meg:
Okay. So, there's a lot of really interesting and important content in your book. Can you just talk us through some of the key messages and what you hope providers of all sorts take away? 

Dr. Mel:
Totally. I would say that there's really four things I want people to walk away with. One, healthcare is more than medical care. And I'm gonna name the four things, and then we can talk about the ones that you're interested in, but healthcare is more than medical care. So, that solutions come from those closest to the problem. Three, we can talk about universal design, the idea of offering not a one-size-fits-all, but multiple flexible ways of participation. And four, that safety is the foundation for participation. And when we do the work of examining all the places in which people do not feel safe, not just physically unsafe, but psychologically, emotionally, sort of energetically, the cues from the environment that do not afford meaningful participation. 

So, those are the four things. So, when we think about, we've talked a little bit about this so far, but the healthcare is more than medical care thing. So, if patients are not able to access school, they're not able to find or keep a job, they are deeply lonely. Like, those things are part of health and people's access to basic needs. Like, really just thinking about all the ways in which the systems let people down, and partnering with the community to bridge those gaps because all of those things are part of health. And when we think about the — we talked about the loneliness piece, like, belonging to community, our practice, we think about that as a quality metric the same way that we track blood pressure or hemoglobin A1C for blood sugar. We track how to what extent do you feel like you belong to a community? 

And we measure that, and we hold ourselves accountable to that, and we look at participation in community programs. And when we see that someone is identifying as lonely, who is not participating in community programs, we wanna figure out how to bridge those gaps. So, we do focus groups where we pay people to come or fill out surveys, and we pay people to fill them out, with the idea of what are the barriers to participating in our community programs? And we did this last, a few weeks ago, and what we heard from people by compensating them to share their lived expertise, we heard that people wanted individualized text messages to invite them to specific things. 

So, yes, that's more time, you know, shaving off more capacity from staff to do the thing, but we care about these people coming to this thing. So, we now have a new workflow where we're piloting this through HIPAA-compliant text messaging, not just mass outreach with broadcast texting, but individualized outreach to the particular people who said that would help them. 

And they're showing up to community programs. We ask them what they need. We do the thing, and they're coming. So, if we care about the people showing up, we have to figure out why they're not showing up and try to do those things to the best of our ability. 

Meg:
I love that. Yeah, it's like the least bureaucratic thing I've ever heard. Like, "Hey, what's the barrier? Oh, that? Okay. We'll try that. We'll put that support in place."

Dr. Mel:
Yeah, yeah. And they could say that they want that, and we do that, and they don't show up. It's like, okay, well, we're maybe not gonna commit to this workflow. This is not a good use of resources. But no, we're gonna measure that. We're gonna look at that closely. 

Meg:
Yeah. Interesting. I mean, that's the same process we use as OTs — I'll speak for myself here — in strengths-based treatment planning. What do you need or want to do? What are the barriers? What are your strengths? How do you learn? What helps you? What is — I usually recommend people start with what is easy and likely to be helpful. And then, be willing to look at it. Do it messy. Do it the easy way first, not the high-effort way, and be like, "Did that help?" 'Cause if we do it the most expensive, time-consuming, high-effort way, then we're like, "No, I've color printed, laminated, and Velcroed that. I'm not changing it."

Dr. Mel:
Yep, yep, yep. 

Meg:
Right? But if you do it the quick way, you're like, "Oh, wait, that needs a tweak. I can tweak it. I'm still flexible." Like, being really responsive. I love how you're just mirroring that process with the community. 

Dr. Mel:
Totally. And we're also asking people, in their annual renewal paperwork, we're asking people, "A year from now, what do you wish were different about your life?" And then, throughout the year, on a quarterly basis, we're checking in with them about those things. And a lot of times we hear from people like, "Oh, I forgot I said that," and, "Wow, that's so meaningful that you're helping me think about that." And then, when people are moving closer toward their goal, they feel really good about that and being reminded of that. 

Particularly 'cause when we're checking in with them, a lot of times we know, like, "Oh, hey, I'm hoping that my goal is to leave my job and get one that's a better fit for me," and we know that has happened at the mid-year point. Like, "Hey, congratulations. We know that thing happened." And then, if people are not on track, it's like, "Okay, well, we don't wait 'til the end of the year. We're gonna partner with you to make a plan. How can we support you in doing the thing that is meaningful to you?"

Meg:
That's a really good use of the power that you hold, I think, as a physician, too. I keep thinking of an interview that I had with OT Brittany Soltani who, this one's on our Patreon, but she uses an approach called social prescribing, where she, as the professional, writes prescriptions for things like, "Try that dance class you've been wanting to try," or, "Make five minutes after dinner to make some art," right? 

Using our power to empower people to do the things that they already want to do that feel good in their life. So, when your physician says, "Hey, did you apply for that new job?" You kinda think, "Oh, maybe this is important. Maybe I am worthy of applying for this new job. Maybe I could try that."

Dr. Mel:
Yeah, and partnering with them to think about well, if that has not happened, it's probably 'cause it's too hard. I don't know why it's too hard — cognitively, energetically? Especially a lot of people that we take care of have complex chronic illness. So, maybe we need some help in thinking through how do we reduce those barriers, whether it's supporting the motor planning and executive functioning, whether it is even just the ideation phase, "I know I want something different, but I don't really know what that is." So, okay, hey, we have this community education program called Brain Club. It's free every Tuesday night on Zoom. You wanna come and listen to community panels of other people who've reimagined their lives and, like, how they're making that work. Like, just thinking about what else we can provide you with as a pathway to onboarding towards your own goal. 

Meg:
I love that. And for those of us supporting families in how they support their Autistic kids, one, we often have an Autistic parent, right, supporting that Autistic kid. So, identifying the barriers and supporting them through accessing whatever it is their kid needs in the community is a useful way to spend our time with that family. But also, I hear we're modeling self-compassion, that our Autistic kids and frankly adults can internalize, that really neutral, "I wonder what's hard about this. I wonder what could help." 

Dr. Mel:
Totally. And I think that part of the model here of patients coming to meet other patients in community, that helps with what you just said. Because you come in, you think you're the only one who's struggling. You have no idea. People don't talk about their struggles. You go on social media and you see people's pretty pictures and, like, all the things. So, you come and you hear real people talking about their real struggles, and you feel less alone. 

And people are in different phases of their journey of self-understanding, self-compassion, reimagining their lives. So, you see people who six months ago were where you are, and they're talking about how they moved from where you are to where they are, and the things that were helpful to them on that journey, and that's — it's hard to visualize sometimes that something can be different. So, hearing your own story reflected back to you through the stories of someone else's account kind of creates that map for you. 

Meg:
Yeah. Yeah. It's very powerful. There's a reason colonialism took our communities from us, because there's a lot of power in them. 

Dr. Mel:
Yeah. So, there's a leadership strategist, Larissa Conte, who talks about power literacy, just like an awareness of how power moves through systems. And I think that is really — that has been really important in our model. So, we are aware of the power that we hold. We are trying to redistribute that power. And that brings to our second point of the book around solutions coming from those closest to the problem, and the power that is shared amongst the community. 

And our programs come from the community. They ask us to do things, and we try to do the things that are within our capacity to do. And if we don't have capacity, we figure out, like, is this something that's aligned with our scope and our mission? And if it is, are there ways in which we can either redistribute some of the other things that we are doing to create capacity? We're not just gonna keep adding programs. And/or can we partner with the community to think about other ways of delivering this? And that has been really helpful. 

And then, also the community creates its own structure sometimes. We have a group of community members who last year when, you know, with all the political and economic changes and all the safety nets starting to crumble further, the community's like, "Hey, we wanna create a mutual aid fund, and we're gonna start it, and we're gonna donate medicines, and we're gonna donate funds, and the other patients can use this." 

It's not All Brains Belong giving them stuff. It's the community you belong to has created this resource that you can use when you need it, contribute to when you need it, and this completely came from our community 

Meg:
Yeah, it is very cool. I think that's a really interesting call to action for folks to look at where power is when their community is in a time of crisis, because there are times, and there will increasingly be times that's important to know. And I see that from Asheville, right, where we went through Hurricane Helene, and we were completely cut off. Oh, we didn't have water for 40-days and power for a couple weeks. But there was, like, a week where there were no roads in, and our worlds changed, and suddenly our neighborhoods were power centers. 

And now we know. Now we know where our power centers are. My neighborhood still has monthly potlucks post-Helene because it actually became a point of social connection, there's a lot of older folks in my neighborhood, that I think they weren't otherwise getting. And I just got an invitation to a joint wedding anniversary party for four couples in the neighborhood who have a joint 150-years of marriage. 

Dr. Mel:
That's amazing. So, sometimes it takes these crises to bring the community together. And I think that there is so much capacity for connection, and what you described is really incredible. 

Meg:
It is, but our structures take it from us, right? We're at work, we're on our computers, we're in our nuclear families, we're trying to get kids back in, like, our actual access to community is systematically taken from us. And then, every once in a while, everything shifts and you see that power and that connection. So, it's just something that comes up again. 

Dr. Mel:
Yeah, you see the discrepancy between the values that I hold, the things that I need, and how I'm spending my time and energy. And I think that brings us to the third point around universal design, like the multiple paths to participation. So, it may be when I think about going to a neighborhood potluck, like, one, I don't know who's gonna be there. I don't know what's gonna happen. I think I'm gonna probably be expected to make small talk. I think that I don't know what, like, is there gonna be seating that works for my POTS? Is there — is the food something I can eat? Is it culturally permissible for me to bring my own food to the potluck? There's all these barriers. And plus, I'm also exhausted from all the ways, the other ways in which I'm spending my time. 

And so, like, when we think about access needs, what someone needs for full and meaningful participation, being able to preview what a thing is gonna be like is a really important aspect of access, and there's so many things that don't afford that. In about a month, I think September 15th, our new toolkit, we have a ‘Universal Design’ toolkit. It's free. It's a menu for participation options for healthcare, for employment, and for community gatherings. And so, it would be something that, you know, if somebody's gonna organize a potluck, they might skim it and say, "Huh, maybe there's a couple things I might incorporate here that might make more people feel comfortable actually showing up." 

Meg:
I love that. Yeah. And in your work, you have such good examples of the preview and the predictability before your social events. I'll be honest, I don't go to the potlucks. They're not my social scene. But during the hurricane I showed up empty-handed and ate. And I'd be like, "I'm so sorry. I would never come to a potluck without bringing food normally." And they're like, "Hey, actually, you have eight kids in your house right now," because we had a generator, we had everybody's kids, "You're doing work we can't, let us feed you." And there was no expectation of that. Like, I'll come and socialize and join in. That piece is there for the folks who need that social connection, but the neighborhood is here for anybody who needs it, regardless of how they participate. It really is a beautiful model. 

But what you bring to this is so much intention, right? Like, often nobody's thinking, "Oh, wait, what about the non-speaking Autistic kid who this is gonna be out of routine for? Is there a way that we can make this social event feel predictable and accessible for them?" Something that comes to mind for me, Mel, that you've talked about before is name tags that are like, "Please stop and chat with me," or, "I'm not looking to chat with new people." 

Dr. Mel:
Yeah, "I'm doing my own thing." We've got stickers — so, the two stickers, and so you show up to an event, you put a sticker on, you can change your sticker halfway through the event if now you're open to interaction. So, yeah, because having those just sort of normalizes, like, yeah, it's okay to actually take that other sticker, and it's fine. Parallel play for all ages is a thing, that's just part of what we do here. 

We had a gathering last fall where we had a lot of different things out, like, sort of strewed for people to participate in. You could take acrylic markers and paint on your, like, there were paint markers. You could paint rocks, and they were just out. And we had models for, "Oh, this is what you could do with this," and a lot of people did that. 

We had a puzzle, but we didn't have it out or started. We didn't have the scaffold that someone could easily sort of, or more easily join into an existing thing. It would take a lot of initiation to say, "I'm gonna go over to the puzzle table." And so, people did not go over to the puzzle table. So, like, little things like that about what actually affords participation to lower the barrier. 

Meg:
I love that. And we so often talk about how universal design is good for everyone. I imagine people listening were like, "Oh, I would feel so relieved to see on somebody's sticker that they wanted to talk." So, you start that conversation, and they're not warm in the way you expect, and you're like, "Did they even wanna talk to me? Oh, yes, there was an invitation there." Or you show up and you're like, "Oh, I'm gonna explode if one more person tries to talk to me," and you feel safe to say, "Don't talk to me right now." Or frankly, walking up to the puzzle and seeing it started, this benefits everyone. 

Dr. Mel:
Totally. Or like in a virtual meeting, we send out access need menus ahead of time, and to know that someone wants to be called on by name to be welcomed into a conversation because a lot of brains have a hard time joining in a conversation, as opposed to someone else might check off, "Never call on me by name." As a facilitator, that is so helpful to know those things. 

Meg:
I love that. I might try that at a training. That's such a good idea. 

Dr. Mel:
That's awesome. Yeah. Yeah, you can see our access needs menu for virtual meetings. It'll be part of the toolkit. 

Meg:
Awesome. Okay, so people will definitely want to look at the show notes for this episode. And I'm frankly most excited to talk about your fourth point, safety as the foundation for participation, so let's go there. 

Dr. Mel:
Yeah, no, I mean, a lot of our community members have spent their whole lives struggling to connect with people. So, what are the things that cue safety? And in the book, we talk about the whole culture being created around things. So, thinking about things like the sensory environment, the communication pressures, the expectations, explicitly naming, "We don't expect anything of you. You don't need to make small talk. You don't need to make eye contact. You don't have to put your camera on if it's virtual." Like, all these things that are explicitly named in a community agreement. I think, for a lot of our folks, the community agreement 'This is what you can expect when you show up here' cues safety. 

And just I think the mindset of cueing safety is the most important thing. Sometimes I need to get to know you a little bit about what cues safety for you. But I think there are some general practices like having a community agreement, and having a preview. And I'll give an example of something that did not go well. We had an event for kids. It was a virtual Stuffies meet-and-greet. And we'd done that before, and it went really well. We talked about this at your Summit a couple years ago. But we did a follow-up event where we had some volunteer facilitators who were neurodiversity-affirming OTs, SLPs, people that we thought would carry this forth. 

But they were not immersed enough in our culture. So, they were, like, doing stuff like making small talk and asking direct questions. And we got feedback like, "This is not what I was expecting in an All Brains Belong event." And we were mortified. We were really mortified. So, now we're like, "Oh, okay. Well, if we don't have capacity to immerse people in a culture, we can't actually let anyone else facilitate events," because it's so important to us more than anything else to cue safety to participants at all times. 

Meg:
You know what, though? That brings me to one of the things I think of with creating safety is moving through rupture and repair. 

Dr. Mel:
Yeah. Yeah. Definitely. Right. And so, being able to, you know, "Thank you for the feedback, and this is what we're doing in response to what you've shared." And the people that gave that feedback a few years ago, they're still involved in community. They come to events. So, the repair — and I think just modeling for folks that it's okay to have ruptures and that you can always repair, both immediately and on delay, and normalizing that. And we talk about that at Brain Club a lot. And I think that a lot of us did not have repair modeled for us as children, and so we move through our lives, and we don't really even know how to do that. And so, having some simple scripts that people can start applying. 

Meg:
Yeah, 'cause rupture happens regardless of if you're comfortable with repair or not. So, rupture's happening with your clients, with their families. The difference is if we're so uncomfortable with rupture and repair that we choose not to see it, then our clients or their families or whoever has less power is kind of stomaching all of it rather than that existing in the space between us. 

Dr. Mel:
And that happens in healthcare all day long. And so, what people end up doing, so either you dread it, and you go, and your blood pressure's up, and your heart rate's up, and you feel terrible. Or you don't go because your nervous system doesn't allow you to go back. You opt out of the thing that cued a lack of safety to you. 

Meg:
Yeah. Yeah. I have an interview early on in the podcast with AC Goldberg who says, "I go to providers who aren't inclusive of trans and gender non-conforming people, and I come back, but only because there is nowhere else for me to go, not because I feel safe there or have a good relationship there." If people wanna really think deeply about safety, if you're listening to this and you're like, "Hmm, what else?" or, "I haven't thought deeply about safety," I wanna redirect you back to any episode that we have with Dr. Gillian Boudreau, because — Mel just enthusiastically nodded. I feel like her work really changed the Learn Play Thrive community and our podcast listeners, but she does the safety piece very well. As we wrap up, is there anything you wanna add or bring us back to? 

Dr. Mel:
Yeah, I think that if I could bring people back to that community care aspect, the community coming back together, like, that is public health. That is the way forward. I think waiting around for systems to fix themselves when people's ability to survive is on the line, I think, you know, we don't need to do that. That's that top-down systems change, which is important and we can continue to talk about and strive for; but that bottom-up systems change, that can be done right now. 

So, it's really an invitation. You don't even — you don't need to start an organization. It's just, I think probably everyone listening has someone in their life who needs something that maybe someone has capacity to share, whether it's a ride, or a meal, or a check-in, or just showing up. I think that kind of instinct multiplied across ordinary people is what actually holds a community together when the system fails them. 

Meg:
That's right. It's how we take our power back, and feels good to everybody. Thank you so much. Where can we find you, All Brains Belong Vermont, and your book? 

Dr. Mel:
Awesome. So, you can find us at allbrainsbelong.org. And for the book directly, allbrainsbelong.org/book. But on the website you can find things like the 'Universal Design’ toolkit, the 'Everything is Connected to Everything: Improving the Healthcare of Autistic and ADHD Adults' toolkit. All these things are free. Also, I invite you to come to Brain Club, which is most Tuesday nights. And you can — that's also free. It's a free community education program on Zoom, and so you can also find that on our website. 

Meg:
I'll link to everything at learnplaythrive.com/podcast in the show notes as well. Thank you so much, Mel. This has been so wonderful. 

Dr. Mel:
This has been awesome. Thank you so much. 

[Ending note]
Thanks for listening to the Born to Be Free podcast from Learn Play Thrive Continuing Education. If you enjoyed the episode, please rate our show on your podcast player and share the episode on social media. For more in-depth episodes, visit patreon.com/learnplaythrive. 

[Ending music; child singing]
Wild, young, and free; the kids are playing today. When you grow up, still wild and still free.