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In this episode of Green Mountain Disability Stories, autistic physician Mel Houser joins CDCI Academics Coordinator Winnie Looby, as they talk about community access and belonging.

“I never really saw myself as…like, an advocate, in any way, really? Because people in Vermont, I think, many people, have been doing some good thinking around diversity, equity, inclusion and belonging — all these things that have unfortunately become very buzzwordy. And it’s just that diversity, neurodivergence, those topics have been missing from the community conversations on diversity, equity, and inclusion. So when I show up, and I talk about that, do I see myself as wearing the hat of a disability advocate? …I show up and name the thing about the oblique angle. It’s given me a lot of hope that that has landed in some brains that truly have never thought about this before.”

A full transcript appears below.

Episode 28: Mel Houser with Winnie Looby

Winnie Looby: Hi, Mel!

Mel Houser: Hi, Winnie.

Winnie: Hi. So I guess I’ll start. My way of doing this is very casual, so–

Mel: Perfect.

Winnie: –Hopefully it won’t feel like I’m interviewing you too much.

Mel: That’s why I agreed to do this because you were the interviewer and I would talk to you all day if I could.

Winnie: Aw, so sweet. Thank you. Okay, let’s see. So, hi, I’m Winnie Looby. I’m an Academics Coordinator for CDCI, and I’m interviewing today Mel Houser. My pronouns are she/her. I live and work in Burlington.

And to briefly describe myself, I have brown skin, glasses, graying brown hair, locks, and a white shirt. Mel, could you introduce yourself?

Mel: Sure! So I’m Mel Houser, I use she/they pronouns. Visual description, I am a white person with short brown hair and I am wearing a red fleece. And should I tell you anything about me at this point? Is that an interesting…

Winnie: Yep.

Mel: Okay, I’d be happy to do that. I am a family physician. I care for toddlers through older adults, mostly neurodivergent people of all ages, often multi-generational families. And I run a nonprofit organization called All Brains Belong Vermont. We try to make life better for people with all types of brains through medical care, social connection, employment support, and helping the broader community better understand neurodiversity.

The other thing I’ll mention about myself is that I myself am autistic, ADHD, dyspraxic, dyslexic, dyscalculic, and the parent of a multi-neurodivergent child.

And so I wear lots of different hats and I’m happy to talk about my experiences of disability and some of the trends of the work that I do and the people I support in Vermont.

Winnie: Awesome, awesome. Yeah, it’d be great if you could tell us a little bit about that, your experience with disability in Vermont overall.

Mel: Yeah, I would say that in reflecting on how to best respond to that question, I also really need to name the aspects of my identity that have so much privilege. And so as a white person, as an educated person, as a person who shows up and says, “I’m a doctor,” that impacts my experience of disability personally, and I need to name that.

I never really saw myself as an advocate in any way really. I saw you just make a face about that because people in Vermont, I think many people have been doing some good thinking around diversity, equity, inclusion, belonging, all these things that have unfortunately become very buzzword-y, and it’s just that disability, neurodivergence, those topics have been missing from the community conversations on diversity, equity, and inclusion. So when I show up and I talk about that, do I see myself as wearing the hat of a disability advocate? No, I’m not the most gifted, articulate disability advocate. I really am not. There are so many people in Vermont who do that really well. I show up and I name the thing about the oblique angle, and I think that it’s given me a lot of hope that that has landed on some brains that just truly have never thought about this before.

However, I will also say that in 2024, we are still in the middle of a pandemic, and the aspects in which my disability most is not accommodated in the world is through the lens of most public places are not safe for me. And I have to make a lot of choices when choosing between my health and full and meaningful participation in a lot of instances. So I’ve had experiences where there’s healthcare I’m trying to access, and as an immunocompromised person, the air in those healthcare environments is not safe for me to breathe. And I have had the experience of needing to opt out. That’s what I do. That’s how I cope. When something’s not safe, I opt out of it.

And so I’ve had to cancel several types of healthcare appointments. I’ve had the opportunity of being accepted to present at a conference and then even when upfront disclosing my disability and naming that I need to be able to present virtually, I’ve had that speaking opportunity revoked. These things happen and they happen all day long and they happen less frequently to me than someone who doesn’t have these multiple layers of privilege.

Or my experience is such that the systemic ableism that is embedded not just in healthcare but in the public school system, my family has been impacted by discrimination in those areas in a way that people would not necessarily name. But when we think about exclusion, it’s the opposite not just of inclusion, but it’s like the opposite of equity in terms of who gets to show up. And my family, so many of my patients, they’re not able to show up at school because of the way the system really is set up to shove people into containers in a one-size-fits-all way. And it is painful. It’s painful to watch, it’s painful to experience, it’s just painful to see systems that are so broken that they are so beyond repair. So that’s my experience of disability in Vermont.

Winnie: Yeah, and you covered a lot of different layers there. So community healthcare: as you know my spouse has been recovering from cancer treatment. And we were kind of a good hygienic family anyway, but it’s taken on a whole new meaning. Now to keep him healthy means yeah, we opt out of stuff. We missed a family reunion, folks we hadn’t seen in a long time. Even though it was going to be outside, it was going to really tax his system too much to do it.

And it is hard, I agree that it feels like you’re kind of talking to the wall when you try to explain why things are a little difficult. I’ve heard students say, “Hey, it was okay for me to do things virtually before. It was okay to turn things in a little late before. Now we’re back to normal, whatever that is, and I can’t get those things anymore. I don’t understand.” Yeah, so it has been confusing. I try not to get mad about it, but yeah, it’s been really hard. Been really hard.

Mel: So what you just named, the get mad about it, that’s something that I personally have been noticing about myself is that when I either experienced myself or my family or my patients, that exclusion, that thwarting, I react with rage. And so that’s not good for anybody’s health, but it’s automatic, it’s an automatic nervous system response to these systems level examples of exclusion. Exclusion is painful.

Winnie: The idea too that something isn’t fair pops up for me, yeah.

Mel: Yeah. Especially in examples where they’re contexts that shouldn’t be optional. It’s one thing like I don’t expect to be a large public concert to be safe for me to attend as an immunocompromised person, but I expect to be able to access healthcare. I expect for my child to be able to go to the orthodontist. I absolutely expect for them to be able to access public school. I absolutely expect that. And when that’s not the case, I experience rage.

Winnie: I wonder too, because you named the privilege piece. Well, my kids are a lot older now, but I remember thinking, sitting in an IEP meeting, how many parents would feel too intimidated by that process to really push back about things. Or maybe they work a lot, they can’t take off in the middle of the day for a half hour meeting where five or six professionals aren’t even really listening to what they’re saying. That part I think gets to me more. I’ll figure it out, but sometimes people don’t have a lot of resources that way.

Mel: I absolutely agree with that. And honestly, that’s part of my rage. So for example, in this instance as an immunocompromised person with an immunocompromised child, to know all the right things to say, to know what my rights are, to at the beginning of the journey have more capacity to fight the fight, but then because of my own chronic illness, to really not have, even with the knowledge and the access to resources in terms of even people resources, people to ask for help and knowing the right people to ask these questions of, even that, the fact that I still could be coerced out of a public school system, what does that mean for the broader community?

Just the power dynamics that are so unsafe for children and families with disabilities to be able to get what they need in school is just … I have a lot of emotions around that and it’s when I see my patients, I would say that almost all of my neurodivergent kid and teen patients, almost all of them are not having their needs met in school. And when the health consequences of being thwarted all day long, to be receiving the explicit or implicit message that there’s something wrong with you, something that needs to be changed about you in order to fit into the container, that’s bad for health.

Winnie: Yeah, yeah. It kind of wears you down.

Mel: It does wear you down until you tell yourself that it’s your fault. And it stays with people.

Winnie: Right, so do you mean like once people give into maybe just give up because tired?

Mel: They give up, yeah.

Winnie: Yeah, yeah. Why do you think, I mean I have my own theories about why. I keep thinking about lockdown and how my health actually improved during lockdown because I was allowed not to be around people for a while and to regenerate and rest and stay out of public places and not have to worry about germs because I was home a lot and my health got so much better than it had been for a really long time. And so in my mind I’m thinking like well, okay, if we know that there’s lots of kids with disabilities who did better being home where they were able to do school online and be wiggly and all the things that felt more comfortable for them, if we know that college students were able to access their classrooms a lot easier, to get their work in a lot easier, there wasn’t a lot of pressure around deadlines and stuff come. I mean even people were a little more generous I noticed, a little more willing to go out of their way to be helpful. I wonder why there was such a rush to want to go back to how things were before. That’s just really disappointing.

Mel: I think that’s how systems work. I think systems built on power structures, they drive systems. And so systems will forever go back toward those over-rehearsed brain pathways of this is the way we do the thing, this is how we have order, and this is how we make sense of chaos. And it’s not the fault of any individuals I don’t think. It’s systems, systems that are not based on the reality that we all have different brains, we all have different bodies, we all have different needs. And when you say it that way, people are like, “Oh yeah.” People can make that shift in their brains, but well, the system is this way.

Winnie: Yeah, I guess too then I wonder how come you can talk one-on-one with folks and they understand where you’re coming from if they didn’t before, why is it so difficult then for more of those brains to get together to change systems? In my head, it’s just logical, but maybe I’m making it too simplistic.

Mel: I think it is overly simplistic. I think that really is how it is. It’s just the idea of when do people have access to the thinking part of their brains. And the path of least resistance when you are a person working in a system that is also not meeting your needs as a person who works in a system, whether that be in healthcare or school or certain corporate environments, when you don’t have your needs met, you don’t actually have access to the thinking part of your brain, at least not fully. And so I think the path of least resistance is to go along with the system. It saves energy.

And I think you and I have talked about this before, just the idea of to change a system, this top-down, make big structural changes. And so in early COVID, there were a lot of top-down changes that happened by necessity and a big dramatic shift, which then kind of opens the door for top-down changes. If you don’t have…

Like school, for example, opting out of school, there’s so much privilege required to be able to figure it out, do something else. Who’s going to be home? Depending on the age of the child, who’s going to be home, who has to work, all of that. Opting out of all the broken systems might not be possible, opting out of some of the broken systems may free up a little bit more bandwidth, a little bit more space to be able to handle and navigate the broken systems that you can’t opt out of. That might be how maybe I think about that.

Winnie: Yeah. Yeah. That’s great. Yeah, I hadn’t thought about that. I mean you get used to having to do things, have to interact with this entity, have to … Well, for example, pages and pages of paperwork for something very, very simple. Wanting my kids to … I didn’t have access to money for camps when my kids were little, and so having to get your taxes and all these forms and saying how you don’t have the money to be a part of this thing and can you have a scholarship? And so in the process, all these people are reading all of your business. You can’t have any privacy around anything going on in your life just to be able to access. Public assistance works that way. Food stamps works that way. WIC for mothers and children, we got that for a little bit when my kids were tiny. You had to bring your child with you to this office with a nurse practitioner I guess, and they had to weigh the baby and do all these things. I’m like, “They go to the pediatrician. Why are you doing all of this?”

Mel: That’s my baby. Yeah.

Winnie: Yeah, and I guess it was some kind of proof that you were feeding them. I don’t know what the purpose of that was. It was bizarre.

Mel: So that’s the thing. So when systems are designed and workflows are designed, I think it’s really important that the people designing them zoom out and imagine the perspective of the people that you’re interacting with, and then you actually [inaudible 00:19:20] and collect information about what is that experience like for you. And the idea that you would compensate people to share their lived expertise with you about their experience of your stuff. That’s how this should work. That is not how this works at all. I think even when it becomes trendy and buzzword-y to learn from people with lived experience, people talk the talk, but then they’re like, “Well, yeah, why don’t you help me recruit for a focus group?” “Well, how much are you paying my patients?” “Oh, I have no intention of doing that.” “Okay, then have a nice day. Thanks so much.” People don’t know, they don’t know how disrespectful it is to extract from other people.

Winnie: Yeah, yeah. It’s like an expectation, and I guess that gets back to the power you were talking about. I’m wondering, I’m hoping people aren’t aware of how much power they have. If they were, they might be kind of sociopaths, right. I’m hoping [inaudible 00:20:26] a case where you get to a certain kind of hierarchy in society that means that you have more privilege than whoever’s below you, which means you have more influence over what happens in their lives. And it’s just kind of a given. And the people who are under here accept it as a given because they have to.

Mel: So for me, those dynamics feel so unsafe to my nervous system. And when there is a power dynamic, I think it’s really important that the person with more power is aware of their power and is aware of all the ways you can share it, all the ways that you can empower other people to have more power and take more power. Because I think part of an inclusive community is that people don’t power over other people because that’s a gross way of interacting.

Winnie: Definitely.

Mel: Even both as a doctor and as running a non-profit, anytime I am inviting or asking something of our community, I feel like it is my responsibility to be aware of the power dynamic of me asking. That it’s me asking. I try not to ask anything. I try to take myself out of the equation because those power dynamics feel unsafe. It feels unsafe to me to have them. And so most of what we do here for community engagement, we design it to account for those dynamics because that feels like the right thing to do.

Winnie: Could you talk more a little bit about restructuring things around power and privilege? How do you-

Mel: Absolutely.

Winnie: You can’t do that in a vacuum, right? So how are you supported in that work I guess with your colleagues or just out in the world? Are you finding other folks who support these same ideas, even if they aren’t doctors or your patients? Are you able to find [inaudible 00:22:59]?

Mel: Yeah, I think that … What a great question. I think that our structure here at All Brains Belong has been very much like a co-created community. So right from the very beginning, even before launching and opening, it was very much bringing people together and elevating lived expertise. And the organization was designed through that lens and continues to evolve through that lens. And it’s like anytime we’re going to do something I think through the lens of just thinking about how is this decision, how is this workflow going to impact other people? We bring that to our community advisory board. They give feedback on that first. We don’t do anything big that we think is going to affect people without getting community input. It’s not just like buy-in, it’s the right thing to do of what’s the point of the organization. The point of the organization is not to perpetuate the organization, the point of the organization is to serve the people. And so why would you not seek the people’s input?

Winnie: Nice, nice. Yeah, you hear buy-in a lot-

Mel: Gross, gross. So I have a PDA profile of autism, so technically speaking people might say that that is abbreviated for Pathological Demand Avoidance. That has been reframed by many as Persistent Drive for Autonomy, it’s a sub-profile of autism, for listeners who are not familiar with that term, characterized by really very sensitive threat detection. That is really what this is. So the way that my PDA impacts me is that power dynamics I experience, regardless of which side of it having more power or less power in a particular interaction, that dynamic feels unsafe to my nervous system. It always has. I remember being a little kid in school and being like, “This? This thing I’m watching? Uh-uh, unsafe.” I didn’t have words for that, but it has always made me feel really uncomfortable. I forget why I gave this background of …

What was the question you asked me? Sorry.

Winnie: Oh, I was talking about finding like minds or support.

Mel: What’d you ask me after that? [inaudible 00:25:41]. I think I brought this up just to say that … Oh, buy-in, that’s where it was. Okay. Yeah. So when someone is not just trying to get me to do something, that’s a whole nother thing, when I see that someone’s trying to get anyone to do something, how do you get them to do the thing? That’s what buy-in is to me. How do you get them to do the thing? That feels unsafe to my nervous system, it really does, of just why am I trying to power over someone else? I’m not trying to do that. I’m just trying to do the thing. I’m trying to … I don’t know. I’m trying to do the thing that the people need me to do. It’s not even like how do I do the thing that I want to do? It’s not even that.

Winnie: Right, right. So buy-in kind of, yeah in my mind, it means that you’re trying to get somebody over to your way of thinking about it.

Mel: Yeah, yeah.

Winnie: [inaudible 00:26:38] listening to what it is that they think or want.

Mel: Yeah. And there are some things like one of our free community programs, Brain Club every Tuesday night, it’s our virtual community education program about everyday brain life. We say at the beginning, “This is a community education program for purposes of educating the community about All Brains Belong’s approach to neuro-inclusive community culture.” We do name that. I’m not trying to get to win you over to see the world as I see it, it just so happens that the way we see it is there’s no right way to think, learn, communicate, be a person. If that’s controversial to you, you’re probably not going to have a very good time at Brain Club and I may as well just name that. That’s all … So it’s not like, “How do I win you over?” It’s like, “This is the culture, this is the norm. We’d love for you to come learn about that.” How do you do that?

Winnie: Yeah. I’m curious about, I know we’re talking about support too, but I’m wondering what would make somebody not want to be a part of something like that? You show them the science, you give them all the resources to look it up for their self if they didn’t know, what do you think would make people just not want to deal with it for whatever reason? Their own stuff that they don’t want to examine, do you think?

Mel: I think many of us have brains that derive safety from predictable systems, and the amount of unlearning that is required to shift so many of your own thinking systems, unlearning is really hard. You have to want to do it and you have to believe it’s possible. And the way I think it works for people is that you’re around other people who are on this journey of unlearning, unlearning their expectations for what their experience of their life is. And so if you’re on that journey with other people, that’s a very different story. If you have never had the experience of showing up as your true self in a community and transparently examining some of these things, I think you fall back on the old ways of thinking.

And most of us through most of our lives have been socialized with the message, “There is one right way to think or develop, socialize, communicate.” And I think the people who have the hardest time are the people who have professional training. So I think yes, the more rigid, but the more you’ve explicitly taught that there is one way to do the thing and this is how you do it, you have extra more unlearning to do than the average person.

Winnie: Oh yeah. Oh yeah. You get your whole license around they being tested on exactly what the right thing to do is.

Mel: Yeah, without recognizing that thing you were taught was just a system that just got passed down, at no time was that system necessarily compared to brain science. At no time was that system subjected to the lens of what does this mean about culture? Are there groups of people for whom this system doesn’t work? How would we know that? Well, we’d ask them. Did we ask them? No, we didn’t ask anybody. We just did the thing over and over again.

Winnie: Right, right, right. And for lots of other purposes, not even … It’s weird to talk about capitalism and disability, but I mean-

Mel: Oh, let’s do it. Let’s do it.

Winnie: It’s all enmeshed really. You think about … In one of my classes, we talk about perceptions of disability like say in the colonial period, some folks who lived here already before colonialism began thought that, “Hey, if you can contribute to community in any way, you’re a valued part of community, period.” But then skip ahead to industrial age where you have to be busy, idle hands are bad, being homeless is your own fault. We’re hearing that again. Yeah, I can’t not think about are all of our advancements and the cost it has been for just most regular people who just want to live their lives.

Mel: Yes. All those isms, they’re all enmeshed. And I think that at the beginning of this conversation, we talked about the oblique angle. I think like at Brain Club, when we talk about how things like urgency culture, perfectionalism, individualism, all these things are connected to white supremacy culture. When you name that for people, they’re like, “Oh, I need to reject all of that.” Yes, yes, you do need to reject all of that.

And so I think this ableism capitalism thing of your value comes from what you produce, your value comes from how much you earn or whatever, all of that stuff, it’s really harmful. It’s really harmful. There’s no way around it. And so as we talk about re-imagining healthcare and community, then the thing that we are spending some time now really talking about with our community is around re-imagining economics. How do you bring a community together? How do you help people figure out how to get their basic needs met through connection with other people? Going back to how did this used to work when you were part of a community, your value came from just being a person in community. And rewriting those brain pathways to make that so, I think that’s an important factor, and that’s what the second half of 2024 is going to be about for us integrated into a healthcare system, our healthcare system.

Winnie: Gotcha, gotcha. I had a question. I forgot.

Mel: Take your time to think about it.

Winnie: Let me take a drink of something.

Mel: Yeah, you take a drink or something. I’ll take a drink of something. And I probably have time for a couple more minutes.

Winnie: What’s one thing you’d wish you’d known about disability 10 years ago, and then one piece of advice you have for people with disabilities or their family members?

Mel: Yeah, I’m going to merge those. I remember early in my parenting journey and kind of like I mentioned, the people that have to do the most unlearning are the people with professional training, yeah that was me. So professionally, I have a whole bunch of neuro-normative training about how babies develop and the milestones you check off in the linear progression. We know that that’s not true at all, but that’s the way I was trained. That’s the way most doctors are trained. And so when my baby was not typically developing, I really, really wanted to intervene, through the lens of I want you to do the thing that I’m expecting babies are supposed to do, not necessarily through the lens of I want you to live your best life.

So the unlearning journey for me was to get off my own train, my own agenda, my own set of expectations, and get on the train of I’m on board to support this sweet little love in whatever they are endeavoring to do. It’s not helpful to think about what do they need to do five years from now, I got to make sure they have the skills to be able to do that thing five years from now. It’s if they are striving to be able to play this game for an hour over and over and say the same word over and over again because that brings them joy and that’s what play is, play is the pursuit of joy, my job is to get on the train of supporting what it is that brings them joy now.

And had I done that earlier, I think, and it’s never too late to shift the dynamic with your child, but had I shifted that earlier, I would’ve started being able to cue safety a lot earlier. Because again, the same way that my nervous system sounds the alarm when someone tries me to buy-in or get me to do the thing, I think there’s many nervous systems that when you are trying to get them to do the thing, that does not cue safety and in fact interferes with being able to do the thing.

Winnie: Right, right, right. You start learning how to mask or ignore what you need because you comply. I think I’ve noticed that a lot of special education, and I trained in special education, a lot of it is around getting kids to comply with what they’re supposed to do.

Mel: Right, as opposed to honoring your intuition, being able to say no, being able to … The expression we use in my child, “Be the boss of your body.” All of these things are so essential. And the idea that we don’t recognize that overriding intuition, not being able to say no, not having bodily autonomy, the way that we don’t connect that to future harm, how do we not connect them? They’re related.

Winnie: Yeah, definitely. Definitely. Yeah, absolutely. I’m glad you said that because I think about that a lot with my own kids and being in special education when they were very, very tiny, two of them. And I just wonder how their personalities would be different or their sense of self would be different if they hadn’t have been through that. Right now they’re homeschooling and their personalities feel completely different than they did when they were in school. They just seem lighter and funny. Their quirk has come out that I hadn’t seen before because we were trying to get them to do the thing.

Mel: Right, because you’re told that you have to, and there’s all those other systems that had you not done the thing that the system tells you to do, it ends up possibly not being safe, especially if you are … There are resources that are only accessible through interacting with systems, and that’s where all these things intersect and that’s where the harm is done.

Winnie: Oh yeah, you can’t get this thing unless you do this thing. This thing that you need, you can’t have unless you comply with this thing.

Mel: Right, right, and unless you’re on the train, the factory train to drive all these other systems.

Winnie: Gotcha.

Mel: Yeah. So on that hopeful note, I do do think it doesn’t always have to be this way. So it’s about first shining a light on it, naming it so that when you’re in it, you can at least zoom out, even if you don’t have privilege agency to opt out of it, to at least recognize that that’s what’s happening is the first step. Because the alternative is it’s happening and you’re like, “Yeah, here I am. I don’t have value. I just got to do the thing.” So I have value, my child has value, my peers have value. Everybody has value by being a person. And when I show up in systems that are not safe, that doesn’t mean there’s something wrong with me. It really just means it’s not safe for these reasons.

Winnie: So would you say that would be your advice for folks with disabilities and their families?

Mel: To sum up, we navigate this world not by ourselves, we have to be connected to other people. So it’s like find a community, whether it’s through All Brains Belong or elsewhere, just find a community of other people who are looking to reimagine the things that you’re looking to reimagine and do it together. That, it may not be a fast track, but it is a much faster track.

Winnie: Oh yeah, yeah, and helpful one too for you in the long run. Yeah.

Mel: Yeah.

Winnie: Nice.

Mel: Awesome. Thank you, Winnie.

Winnie: Thank you so much, Mel. I love talking to you.

Mel: I love talking to you too. I hope you have a great day.

Winnie: You too, bye.

Mel: Bye.