https://youtu.be/Hs2zqprOxtw

In this episode of our podcast, CDCI Community Services Coordinator Adrienne Miao connects with Michael Shor. Shor is an autistic psychologist, an advocate for people with autism, and a member of the CDCI Community Advisory Council.

A full transcript of the episode appears below.

Adrienne Miao: Hi everyone! Welcome to the CDCI podcast. My name is Adrienne Miao. I’m one of the CDCI core function coordinators. I’m the community services coordinator and I work as an OT [occupational therapy] consultant on several of the projects with the I-Team, the Continence Project and [Pediatric Professionals of Vermont]. And I’m very excited to be joined today by Michael Shor.

Michael, do you mind introducing yourself?

Michael Shor: Not at all. In terms of the the Center on Disability and Community Inclusion at UVM, I’m on the Community Advisory Council, which is basically a place where people with different relationships and perspectives, around disability can participate in shaping what the organization does. Otherwise, apart from that, I’m a person on the autism spectrum with a number of various neurodevelopmental diagnoses, like ADHD and various sort of, subtler differences with motor function and things like that.

Professionally, my sort of main job is I’m a psychotherapist.

I work out of a practice called St. Johnsbury Psychology Associates, with people across the state. And aside from that, I’ve also been working with the UVM Autism Collaborative and doing a certain amount has consulting and facilitation with some community-based research projects related to the autism spectrum. So that’s professionally.

Did your question cover other areas too?

Adrienne: If you’d like to share anything about your personal interests or what you’re engaged with this winter, that would be fine too.

Michael: Yeah. Yeah, that’s cool. So personal interests: I am really actually quite interested in a lot of things. I’m a — I call it scientifically-minded person? But really I’m interested really in the whole science, technology, arts and sort of spectrum. And do things actively in all those all those areas.

One of my big interests is neurodevelopmental differences. And as someone who was started to be diagnosed with neurodevelopmental differences, maybe… I guess it would be going on about 30 years or so ago. Maybe that would put me at 10, or something and probably even a little earlier than that.

And trying to understand things about it always sort of piqued my interest. Dealing with living in a not always very neurodiversity-friendly world, also had lots of challenges and also interesting sides to it as well.

And so, I ended up using my strengths to kind of both deal with those kinds of things and also to sort out how to do the things I am good at without a lot of interference from external and internal issues. So that got me driven to really understand the science, the social issues around these kinds of things.

By social I both mean societal, and I also mean like interpersonal. So since then I studied psychology and then got a master’s degree in social work. I am a practicing therapist working towards independent clinical licensure.

And then after I started doing that at some point I wanted to take the opportunity to get back into research. So I ended up jumping on an opportunity at University in Vermont back around 2017 with a new doctoral program that was there, and really looked at getting more involved with autism research, which is something that I had always wanted to do.

So that’s the sort of my quick “long intro”. *laughs*

Adrienne: Thank you so much. And we’re going to dive more a little bit into your both your career interests and your research interests, but I’m wondering just for anyone that may not be as familiar, could you just describe what you mean when you say “neurodevelopmental differences”?

Michael: Yeah. So that’s a complex question worthy of an answer.

By “neurodevelopmental differences”, I mean — well, okay so on the most basic level, I mean I have a diagnosis of autism spectrum disorder, for example. (Or we’re generally kind of going more towards calling ourselves “autistic people” at this point.) And attention, the attention issues and things like that.

So but what they really are is variations.

On the basic level, there are variations on how the brain is structured and functions for a variety of biological reasons.

And so some types of variations happen, like after you’re born, sometimes they’ll start appearing when you’re an adult. So for example like, the core symptoms of schizophrenia, for example, are an adult-onset mental health condition. With neurodevelopmental disorders generally, there’s really some aspect of them that exist when you’re born.

And over time, you don’t necessarily see all the differences immediately unless you look very carefully or some of them just don’t really show up until you sort of, go into situations where you use those parts of your mind or that kind of thing. So that’s why they’re considered developmental.

And some neurodevelopmental differences you can measure the day someone’s born if you do it carefully enough and some take time to kind of see.

And the other aspect of the neurodevelopmental differences… So when I was first diagnosed, autism was existed in a category called “pervasive developmental disorders”. And in some way I kind of like that term in the sense that because it’s not like, you know, you grew up and you had a stroke in one part of your brain and it just sort of stopped doing what it was doing.

It’s more like that most of these things affect function across a lot of different areas of processing and stuff. And so the symptoms we use to make the diagnoses or the features to make these diagnoses are just limited part of of what the actual experiences and maybe even loosely tied to the underlying biology of it.

Adrienne: Thank you. You took a really complicated question and gave a really clear answer.

Michael: *laughs*

Adrienne: And I appreciate that, Michael. You mentioned you received your diagnosis when you were maybe around 10 years old? And I’m just curious: did you grow up in Vermont?

Michael: I grew up in West Virginia. Are you curious about the diagnosis, like what the history of that is?

Adrienne: Only if you feel inclined. Yeah.

Michael: No, no, I think it’s interesting. I mean, I think it’s interesting. I think just from a societal view of the fact that, you know, I was born in a time that stuff was just evolving. When a new set of diagnostic criteria came out pretty shortly around when I was diagnosed with it, that made it more easier to get one of these diagnoses? On paper?

And I grew up in a small private school, and I started having learning issues where the way that I was taught different things just wasn’t working very well. And that’s really what spurred getting a evaluation done. And we ended up driving like two and a half hours to U.V., the University of Virginia to get a sort of multi-day assessment kind of done.

And that’s where they said, you know — they, you know, gave me sort of various kind of learning disability kind of oriented diagnoses?

And then they sort of said, “And it seems like there may also be–” they just called it “pervasive developmental disorder”, which isn’t actually a diagnosis; there’s pervasive developmental disorder not at the right specified, but they didn’t really say that. They were just sort of putting me in that third general category.

And then also: “And we think you might have ADHD, too.” So those are the bigger ones that I tend to talk about, but like really, I was also diagnosed with like dysgraphia, meaning difficulty in like handwriting, and working with that. I wasn’t diagnosed with dyslexia, but I really have dyslexia too. I was kind of kind of fine motor coordination issues and that kind of thing.

So I had this sort of whole host of things that came up at once in that process, and that’s what got me there. And eventually I got an Asperger syndrome diagnosis. And then as an adult when they switched that over to ASP, we you know, switched that over. But.

Adrienne: I’m curious when you think back now, what it was like for you to receive all those diagnoses, that information: was it helpful to you? Did you feel like it made a difference for your education?

Michael: So yes. But how it was, I think the diagnosis was mostly helpful, but I think in some ways it wasn’t done as well as it could be. And then I also– so like with the learning stuff, which is what  my family originally had taken me there for, we tried to kind of quickly make changes in my schooling situation with that.

So through the public school system, we got what they call additional services kind of stuff, which was like some occupational therapy and speech therapy. And the reality was some of that was fairly useful and some of it was fairly mixed. Didn’t got really great academic accommodations in a lot of ways with the stuff and never really did, honestly? And so since that was part of the purpose of it, I think there’s really not nearly enough either research or intention — at least at the actual like, educational level to really use that information well.

I think even today it’s extremely backwards, the lack of real systematic modification. And obviously, like, you at a college level, you see almost nothing other than sort of like time accommodation being done for like, learning differences. And really that’s mostly what the sort of K-12 places I did was willing to do at most and that’s really not enough. It’s not an appropriate approach to solving some of these things.

So it was mixed.

The autism spectrum thing, we just didn’t really know that much what to make of it, honestly, I think at the time. And until I was like 16 and like actually saw some documentaries on this thing, and was like, “Wait, yeah. That really is me, and that starts to explain some stuff” it just didn’t mean that much.

And I had talked to some practitioners who had some pretty misleading views on what the autism spectrum was.

So I kind of assumed that they knew what they were talking about. And that maybe I really wasn’t on the autism spectrum. But I really was on the autism spectrum.

And the ADHD thing: so much rhetoric around ideas like it was being over-diagnosed and drugs were just suppressing function and sort of stuff, that I realized over time, like — you know I’m not saying that medical management of ADHD is always good in the way it’s done, but I felt very misled in the end when I started to use medications for it as an adult and was like, “Oh, you know, that could have really changed my life in some very positive ways if I had really understood it and used it as a kid in a useful way”.

So yeah.

Adrienne: Do you feel like a lot of your personal experience is what has driven your interest: in neurodevelopmental disability, in this field, in psychology?

Michael: Yeah I mean, it’s a little bit of a combination of it. …Wait, can you repeat the question? ‘Cause I just blanked on what you said.

Adrienne: No problem. I was just wondering if in your personal experience, you feel like the gaps that some of the gaps that you saw in your own experience of the health system, the education system, have led to your current interest in being involved in this kind of research and advocacy?

Michael: Yeah, yeah. And I should say something else about this too, which is: like, well, before I had a diagnosis, I always knew I was different in a lot of ways from a lot of people? And everyone else knew I was different in a lot of ways from other people, too. And so I did learn things as you know, they got diagnosed or understood — that kind of thing.

But the other thing about it is, is that like… so like, the core features that you get diagnosed with with autism, I do see them as disabilities in some ways, I see those as things are useful to like, address and change to some degree? Which is think maybe is a more controversial thing to say than I wish it was now?

But the other side of it is that that whole spectrum of having a brain that functions differently has a lot of different aspects to it, and there’s a lot of tradeoffs to it. And it’s not so simple as like “this is a disability” or “this is not a disability, and this is just great”.

Really it’s a combination of these kinds of things, some of which are like really things I value about myself that come from not being neurotypical. And then there’s… so I always understood that I had strengths from things, and things that really [inaudible] sort of my individual personality and stuff out of it.

And what I ran into was a situation where it was like, once I dealt with the public school system, really, they were theoretically willing to try to do kind of remedial stuff around disability things? Although not very good remedial stuff usually. But there is never the focus of doing that because like, hey, I’m a human being who has a life path that needs to be supported in the process.

And so the areas of strength that I had, you know, kind of really got pretty short shrift in the process? And really actually also getting like support and accommodations in the areas that, okay, so the product of what I was doing may have already been beyond typical, but that doesn’t mean I don’t have a disability in the execution of the things involved in doing those things.

And so that really that — that one version of living on the autism spectrum that exists and doesn’t really get talked about a lot today. So like for me they’re really like… I mean, in a certain level, the only reason I care about being able to actually address and change some of the limitations of the disabling aspects of some of these things is because they are in the way of like, what I want to do, and what I believe in and that kind of thing in my life. Or or at least how they interact with my environment is in their way. But I think a combination of both.

And so I really wanted to help people who have things that are important about them, be able to develop them and express them and, you know, like we have a lot of…

If you’ve been exposed to the background — for people listening to this — if you’ve been exposed to background about neurodiversity, like there’s a lot of talk about like, you know, there are strengths and unique things we bring to the world, but maybe not enough focused on really looking at actually what they are, and actually how to support their development. Like consciously?

And I think it’s really important to do that from a young age. And I think actually even over time, we may be getting worse at that? Not even as good as when I was a kid in some ways? And in the guise of getting better at dealing with the more of the deficit, sort of this kind of aspect of it.

And so, yes, it was my own experiences, but also when I got into college and started meeting other people with these diagnoses for the first time — at least the first time I was aware that I was meeting other people with these diagnoses — I started to realize, like: I also had some really, really difficult experiences with all this growing up, and I also had some really very good experiences too.

And I think despite the difficulties, my experience is so much better than average, honestly, for people who are affected by the disability as much as I was.

And I really wanted to sort of try to understand how to kind of resolve that because I, you know, met people who seemed very like they have really wonderful things about who they are and what they, you know, bring to our community potentially.

But like, the reality is that a lot of us are depressed. And a lot of us don’t really have access to the ways of expressing those abilities.

And so people who really, in a lot of ways objectively would have an average level of function as a human being, but just in different areas and distributed differently, who haven’t been able to work, find relationship and other kinds of things like that.

And I just really felt like it needed to change.

And as I started and continue to actually learn about it, I realize sort of like how ignorant the field has been, honestly? About the actual experiences and perspective that exist because, you know, at least a lot of us are able to talk. We can potentially articulate these things. We have the full spectrum of levels of intellectual function that exist in the rest of society.

And yet, like when I started this, I couldn’t identify a single major autism researcher on the autism spectrum 50 years after diagnosis, had been described, right?

I just felt like it was important to change that. Because things that like typically developing people might consider like a base validity — for people not familiar with base validity I meant it appears like it might be possible — but through the things that may appear possibly true about autistic people, the people who don’t really maybe have the experiences themselves or even maybe know a single person who really does on a personal level, can come to conclusions that are wildly inaccurate.

And they can do research that costs hundreds of thousands of dollars based on premises that I could have told you in two minutes that this wouldn’t work or this wouldn’t come up with a useful outcome.

Adrienne: So you said a lot of powerful things and we will talk a little bit more about scientific priorities. And some of your research interests.

I do want to go back and just say I want to correct myself. I think I said “neurodevelopmental disability” and you said “neurodevelopmental difference”. And I know you said that from an early age you felt different than a lot of other kids.

And I want to go back to when you first started to identify with a larger community. I think you mentioned that when you went to college, it was the first time that you really were able to have a regular interaction with other people who maybe were more neurodevelopmentally diverse.

And I’m wondering if you could talk a little bit about how you picked the college, what the college experience was like and sort of how you started to first get into advocacy.

Michael: Well, slight process. So I said that I went to elementary school at a private school, so I went to seventh grade, skipped eighth grade and went to ninth grade at a public school and started having a lot of problems and my health had deteriorated. So I ended up homeschooling through high school. So that’s one of the things that affected my sort of educational course.

I ended up focusing my education on areas that I was good at learning and mostly kind of good at learning on my own because I couldn’t really get a lot of the kind of support I would have wanted in the areas I had trouble with. I had so much of a problem with math and the school situation that I never really was able to get it. It became kind of a PTSD thing, where just looking at a math problem I got a migraine kind of thing.

And so my interest has always been in the sort of science and technology realm as much as anything, and there just wasn’t any really easy way to bridge the gap to where I’d want to be with that. And I had trouble with organized writing and that kind of thing too, even, you know, like typed and stuff, which was better for me.

So I had to look for places that I thought that I would function well enough given the fact that I knew that I probably wouldn’t be able to systematically get any kind of better accommodation than more time to do things. That became clear as I looked for colleges.

The other thing is I was having problems with fluorescent lighting, that I think maybe now may have been as much of a sort of a PTSD response as that there are real sensory problems with it, too. But I think they melded together and started triggering things like migraines for me.

And so I had to find a place that would accommodate that enough for me to go through that. My experience was I just wasn’t able to sort of kind of prove that to people. And a place wouldn’t want to actually take it seriously and would accommodate that.

So I looked for places that were a bit more alternative and a bit more flexible in their education, not so oriented toward conventional grading and stuff like that. I applied to a few places. There’s not really a lot of alternate more alternative colleges that exist, and there’s, I’d say, even less now than when I applied. But I applied to a few places that looked decent and I got into Burlington College, which unfortunately is not in existence anymore.

But it was a great educational experience for me in a lot of ways. I was able to focus on the conceptual aspects of what I wanted to learn and it was challenging that the main sort of output modality was writing, there, but at least that was something I could get help with and work with on a timescale that made me able to do it versus like tests or something on class.

And I did end up becoming a good writer in the process and stuff like that.

But I guess my point is: if I had the strengths I had and I didn’t have the disability that I had, I probably wouldn’t have been that interested in neurodiversity per se, and I probably wouldn’t have taken some of the stuff though, seriously. And honestly, I would have probably become a physicist or an engineer or something like that.

Adrienne: Yeah, Well, and I loved how you described it that, you know, we all have things that we want to change about ourselves when we talk about, you know, things that we we may change, but we also all have interests and strengths that we would like to develop. And that, you know, is the hope of education, is that we can do both of those at the same time. I think that’s a really lovely way to describe it.

So, okay, take us a little bit past Burlington College then. How did you kind of make the next decision about work and education?

Michael: Okay, so when I got out of B.C, I had double majored there. I did a psych major and independent consciousness studies major. And the first thing that I thought of going into was consciousness studies as a field and sort of towards the end of that. And Burlington College is not a research-based institution at all.

So I hadn’t really had a lot of opportunity to have contact with that world at the end. So I went through the Tucson Conference on Consciouness, which is a great conference, but and started to talk with people about, well, like, what about graduate school and what would I be looking at doing there?

And I started to realize that’s a very small, undeveloped field in a lot of ways and the opportunities that existed weren’t that interesting to me and would be hard to get into with the background that I had.

So my other big interest with the autism spectrum stuff.

And so I was like, well, okay, I will apply to a bunch of research-based programs that my qualifications sort of theoretically fit for and that are researching autism in ways that I thought was interesting. And I did that.

And so as I got through some of those applications — which was hard to do too, because I had to deal with things like GREs and stuff, and they were really horrific to deal with at the time about disability stuff and possibly still are, I don’t know–

Adrienne: Were you able to get accommodations for the GRE?

Michael: I was, but by the time I did it actually like made it so that I couldn’t even get some of the applications due in time. And it took so much time just to even get some of the disability accommodations dealt with and stuff, that it also took away time to study for the stuff and really kind of be prepared and stuff.

One of the things a lot of people don’t realize is one of the huge issues around disability is just how recalcitrant places are about really providing accommodations and how much legwork that they require to do things that that should be super easy.

Anyway, my point is that like I got applications in on time, maybe two to four of those places.

And then then I was like, Well, what’s my backup at this point?

So I started looking at what my options were that I could still apply to once I got through the things that were most important to me. And I applied to a couple clinical programs at West Virginia University, which was, as I say, more of a backup plan than anything else.

And I didn’t get in to any. I didn’t even get interviewed for any of the autism ones that I did, which I think is interesting because I actually did have a decent background, and I talked about being on the autism spectrum and, you know, my interest in those kinds of things and stuff. I honestly felt it was rather rude for a place to not take enough interest to at least find out if I was a decent fit at that point, if that’s what their whole program is…

*laughs* You know?

Adrienne: Yeah, it’s surprising.

Michael: Anyways, I was like, well, I could try applying to these things again, which would take me at least a year. And I don’t know if I would be any more accepted than before, although I could do GREs and things like that, or I could take two years and do the social work degree.

So the social work program was the one program I actually got into that I had applied to and I was like, you know, maybe I can actually get some research experience because that was definitely the biggest feedback that I’d gotten about, you know, that people want research experience to do research.

And so I took that program.

I did everything I could to both get research experience during a clinically-oriented degree and also to get background in autism spectrum stuff and focus my work in that area.

And so I ended up doing both of those things. That was what happened there.

And when I’m in the middle of a program like that, too, like my ability to focus on like what the next thing is, isn’t that good, realistically. And so I decided to go ahead and try clinical work before trying to go back for research for a while.

Adrienne: And can I ask: I’m curious how your clinical work in social work has– how that sort of changed your engagement with your interest in autism spectrum disorders?

Michael: Yeah! A lot!

Both: *laugh*

Michael: Well, it was interesting. I mean, first of all, by that point, I’d gotten so many different perspectives and exposure on things and you know, so much also practice while living at an adult rate just with it that was also changing my perspective on things. But doing clinical stuff… when I started, I did some kind of intensive mental health things for an agency first when I started, but then when I really, really decided to become a therapist — and that didn’t work out super great for me for various reasons and stuff. One of the things I realized that I was doing it is that like the emotional impact of working with people in sometimes really difficult situations and situations that maybe overlap challenges that, I really was still having or, you know, dealing with in different ways and dealing with even just the prejudices of parents and other people in the situation is very difficult for me.

And I really couldn’t handle really doing that full time without a lot of sort of work on sort of how to be able to work with that?

That’s one thing that sort of kind of changed my interest and perspective with things.

The other thing is when that first job wasn’t really the right thing, in the end, I decided to create a private practice. And I really thought about like: how do we work with other neurodiverse people?

And I created something called the Mental and Social Health Center was my idea. My idea was to eventually make it into an interdisciplinary practice. And really try to offer a variety of stuff like community-based services and counseling, but things like occupational therapy and speech services or something, but in kind of high quality neurodiversity-friendly ways.

So that was my idea.

My first thing was just to be able to do it and do the work and figure out how things work. So I went into it without having any direct traditional psychotherapy experience yet. I mean, the thing that I did before that was basically family counseling to a degree, but this was different. And it was interesting.

So I found that bringing in and experiences around sensory things and that kind of thing was really helpful. I think it’s one of the more under-appreciated aspects of the condition. And every so often people try to like remove the whole category from the diagnosis? And in fact I think they did that with the latest ICD criteria — yet again. I just think it’s a really bad direction to go because it’s so functionally relevant to how we experience things.

I realize I’m giving sort of long sort of complex answers and, you know.

Adrienne: Well, it’s a complex topic! And no no — I think you’re bringing such an interesting perspective because you have occupied all these different spaces and roles, both personally and in your work and in your own experience with the education system.

So I want to go back. I do want to ask a little bit more about research, and I know some of your interest in sort of design and in sensory awareness, but I wanted to ask first about I know you said in college you started to interact with more individuals — and certainly in your work you were serving a lot of families and individuals — with autism.

I’m wondering sort of when you first saw yourself becoming an advocate and and how your ideas around advocacy have changed sort of over time.

Michael: Great question. So I’ll break that down I guess into two pieces. Okay.

So first is the question of when I first time I thought of becoming an advocate. I thought of myself as becoming an advocate when I was a teenager. So actually, really before that, at least in terms of self-advocacy, but I always knew that I wanted to address the societal issues around that.

And even before I, you know, I saw myself doing disability advocacy specifically, it, you know, in one way or another was something that I really wanted to do in some way, as long as I can remember. Like it was always like just kind of part of my personality, I think.

I’d always had the interest in it in some way or another. Once I went to college I did get more experience doing it more hardcore and really I had the intention from the beginning of like — I mean aside from choosing a little bit of an alternative place to go, I also wanted to choose a place where I could potentially influence the function of it and really be involved.

And so being somewhere really small, I decided to take on any kind of student role that I could where I would have access to like impact stuff with it and learn about that.

And so that’s one side of it.

The other is that there was a pretty active electronic community of mostly parents of people on the autism spectrum at the time in the Burlington area. And I got on their listserv and kind of you know introduced who I am, you know.

And so I met one person who really through his mother who is an older autistic adult through that, and became friends with him. And also just really tried to understand, like, what are the effects of this?

At the time he was in a group home situation, for mental health, group home oriented… and over time he ended up getting his own apartment and that kind of thing there. But that shaped on my interest really, having his experiences. And I met one or two people with different neurodevelopmental differences that my college and that kind of shaped it.

In terms of actually doing direct advocacy for other people, as soon as I really started having conversations with people with similar experiences and who were who were having difficulties with things, I really wanted to apply the skills that I had to giving them ways to, address things in their own life, and also just using my own ability to actively, directly advocate for other people or advocate for the changes that were needed for the people that were around me?

And I would say: so I’m a system thinker, naturally. Although historically, like one-on-one social stuff hasn’t always been that easy for me. Understanding like more like group dynamic social interactions and like kind of things that are organizational level and stuff that’s more intuitive. So I’m kind of a strategic thinker. Even when I was like a teenager, I thought like that I would find like, maybe like, like studying law interesting.

And I also realized that I would probably, you know, just bang my head against the wall every day if I was a lawyer with how much I would be bugged by it, too. (Just giving a perspective.)

But policy was always interesting to me, too. And so I guess one of my strengths like to be able to learn a lot of different conceptual and structural stuff about a lot of different systems and ways of thinking and kind of trying to tie them together to solve problems so that, you know, I think where some of the neurodiversity strengths come in.

Adrienne: How did you first hear about CDCI and and become involved working with CDCI?

Michael:  How did I hear first hear about it? When I first sort of started really looking at it was when I was a student at UVM and looking at different disability-oriented resources and stuff around the University.

If you search on “University of Vermont” and “disability”, CDCI will quickly come up. And so I think that was how I first really became aware of it. And I did a training that was cohosted with the Vermont Family Network and Vermont Developmental Disabilities Community Committee (or I forget what it’s called) . But anyway, they have something called Vermont Leadership Training. And I did that.

And, you know, again, started looking at actually like maybe apply to some committee and stuff, to be actively involved in in the area to do things. Once I was out of out of college and had some time that I wanted to put into it, I really wanted to have some way of being connected into the community of this kind of thing.

And I applied to join the Community Advisory Council there.

Adrienne: Can you talk a little bit about with what it’s like to be on a community advisory council, and what you do?

Michael: So it I think that it depends on exactly what role you choose to take on. The very basic thing is that we meet four or five times a year or something, formally, and the staff at CDCI presents some of what’s going on, some of the topics they’re looking at and that kind of thing. And being on the committee it’s a different opportunity to provide feedback with that but also offers an opportunity to get to know the people on the committee and also the people who are presenting things to the committee and and discover if there’s opportunities you want to engage in more interaction with — like what we’re doing now.

So, I see it personally as like it’s both a vehicle for formally filling an advisory function, but informally just to know what’s going on, and to give input on things so that things can sort of evolve and change and stuff.

Adrienne: And so and you’ve been involved now for how long?

Michael: I think it feels like about two years or so. Maybe. Yeah. I’m also involved with the UVM Autism Collaborative, which has some overlap and stuff and things too. And so that also blends together in my mind a little bit.

Adrienne: Yeah, Can you talk a little bit about your experience with the Collaborative?

Michael: So I joined that after I was a student there and you know, when I found that sort of committee and I just wanted to kind of get back involved with sort of research-oriented stuff, and sort of bringing an autistic perspective to the picture. And so that was interesting. I think at first when I was doing it that it was kind of a new thing.

And there was a variety of levels of whether people were actually really collaborating with research or just maybe talking about different things they were doing in the place and stuff. And I felt like there still wasn’t a lot of really sort of participatory research being done really in terms of a lot of UVM autism researchers, depending on what kind of research and stuff.

So I really wanted to also give input and see like some evolution towards both just sort pf more organization about having really good research done at the University and also more integration of like: how do we capture the perspective of autistic people and get them presented in a meaningful way? A lot of times in my experience in life, if I go in a situation and say, “Hey, I have this experience, this is a problem, I know it’s an issue.”

Like there’s either a direct, or instinctive response people have of like, “Well, you know, you’re one person, you have one perspective.”

But that perspective may have had 2,000 hours of education and focus behind it.

But you might not notice that or something, right?

So I think there’s there’s also in some ways the power in numbers about getting participatory research done and having things echoed by different people and even just knowing that like something that seems like a very clear from experience. Is it right? Is it limited to one portion of the autism spectrum or me personally or something and they don’t realize it?

So I think I can say that what I’ve brought is part of the reason that we’ve started really doing some larger participatory research projects out of out of UVM. And I’ve ended up being like a part of a couple of both of those projects now as a sort of limited employee with it.

And it’s been a really great experience to do that and have a chance to participate in a way that structured so that like it isn’t super overloading to the difficulties that I have in the situation, and using some of what I’m better at in that process too.

Adrienne: So I’m going to ask an unfair question because it’s such a big question, but you’re raising this issue of how to make research more accessible, more representative, more inclusive. And I wonder if you might be willing to just share some thoughts about where we should be heading. You’ve mentioned the need for more participatory research. You’ve mentioned how narrow really the pool of researchers is that it’s not very representative.

What would you like to see as some of the next sort of steps to make research more accessible for more people?

Michael: Well, I think the biggest both long term thing is that the education to be a researcher in a conventional sense of being a researcher, needs to be accessible to everyone who has the desire to do it, really.

And by accessible, I both mean like literally, like: can you even qualify for whatever it is, right? So like my experience of not even getting into the program was one piece of it.

So there’s a lot of level to it, right? If you haven’t gotten adequate support for all your K-through-12 education and then you don’t have a conventional background, like why is that required just for anyone who doesn’t have a conventional background to really be successful in shifting towards the research environment.

And I think just promoting that level of diversity in research-oriented sort of programs would be a major advancement for research in general. Even for people who don’t have a condition or something associated with it, because it brings a diversity of life experiences into it.

One of the problems can be that research can be so expensive and difficult to get into that that may be all that someone’s actually been able to do in their life, that data where they’re doing it. It’s expensive to have the resources put in, for people to be able learn different things, try them,, and then not use them in ways that are considered highly productive in those areas.

But there’s a benefit to having the opportunity to do that sometimes, and to try things can change things. I think one of the things, you know, is that having a more experimental mindset and willingness in certainly the educational system to say, “Well, like hey, lyou might not bring something that’s super conventional but if you bring something unconventional, how do we really support you in that situation?”

And that would be a major shift.

Even if it’s not through a conventional educational path, you know, later on, like now with like trying to just get people in the community involved in specific research projects, to start with, it’s the same mentality required: having that flexibility and adaptation to say, “Okay, like, you may not be able to work a conventional work schedule. How do we provide the wraparound to make this work?”

Or: “You may not be able to count on having the same level of ability to focus on a task at a specific time, but you would want to. How do we make this adapt around it?”

And so some of it exists at the institutional level, and some of it a problem with things like funders and stuff.

I think eventually we need to talk with places like NIH and stuff about how they conduct things like grants and stuff and really, you know, make some of that more accessible too.

There’s a whole other level, though, where there’s a lot of focus on precedent with research, essentially, basically?

And that’s not exactly how the research community talked about it, but if you’re trying to design research, the easiest way to do it is to mostly copy someone else’s. And it doesn’t mean that you can’t apply for a grant to do something really original with NIH and data.

But it does mean it takes an incredible amount of time to work the basic theory of things and to find the justification for doing something that like, experience might tell you is important.

f there’s not more room to cite experience and to talk about experience in the process. So that’s part of the reason I think it’s just so important to do some of the qualitative stuff that I’m involved with and haven’t described. But to get some of those things that say, Hey, this is a reason now to test this, and to look at it using other research methods and stuff because we’re limited by that paradigm of, you know, precedent.

So the other point about this is like, I think for, let’s say like an institution like UVM, it’s not super easy to do this kind of stuff in some way. The cost of living in most places that you can do this kind of research is high, and you have to be able to pay for people to have a reasonable lifestyle and researchers and stuff.

Then you have to be able to pay to do the research activities too, right? But then also, like good science, really requires room for creativity and experimentation and and taking chances and things like that. So I think part of the problem is that we need society to recognize that it’s important to fund things in a way that that’s possible.

And we don’t have to be super conservative about all of the approaches being done to things because like it’s lots of people scrambling for a very tiny amount of resources to do something.

Adrienne: So can I ask you to talk a little bit about some of the research that you are involved in and some of your own research interests? I know you mentioned some of the qualitative components.

Michael: Yeah. The research team currently involved with iss funded by the Patient Centered Outcomes Institute, which is something that’s newer, and created by the Affordable Care Act. So a lot of people aren’t as familiar with it at something like NIH, but it’s actually, I believe, a bigger funder than NIH is, just in terms of how much money that that a grant does get. I learned about that kind of when I was a doctoral student.

But what we’re doing now is sort of starting to lay some of the basic framework of participatory research in in the Vermont community. So the first thing we wanted to do is actually collect information on what people feel like they need, to be involved as research partners.

So that’s the first project that we’ve done is basically to try to conduct some focus groups and other sort of qualitative methods of getting feedback from people in the community,  including from from parents and people on the autism spectrum, and sometimes sort of providers and other people too. When the first project was just basically asking basically, “Well, what do you need to show up? What will make you feel comfortable? Like how do we do this correctly?”

And then the second project that I’m involved with is around health care transition, so that’s really transitioning from child to adult healthcare. But effectively, that means you have to understand what’s happening with adult healthcare too. And child healthcare and how to make it work better in both of those things.

So my interest in some ways is a lot about just improving both those systems. I think the transition process is bad, but like if the systems worked right, that’s not the biggest problem, honestly, the transition itself?

But I think I think like our society doesn’t like to acknowledge adults with disabilities in a certain way.

The closer you have to children who are perceived as like more sort of innocent, the easier it is to get people to want to, like, embrace solving a problem. And the other reason is that people like want to make problems go away early, which is in some ways if you can and they’re just problems, and you’re not getting rid of something important, that’s fine. I agree with that. You know, like, I think it’s great to try to support speech development in young children and stuff and and make it clear that people aren’t dealing with the sort of emotive consequences of things?

But anyway, the so we’re looking at health care transition partly because, you know, there was an opportunity to do that that was created somewhat externally and we took it and we’re making it the best that we can with that paradigm, which is a good enough starting place in my opinion, to start asking these questions and stuff.

And so really the other component of all of this is just all the internal stuff that goes into figuring out how do we do this stuff? How do we do it right? Where do we run into challenges? We’re also actively really researching that from our own internal process of the people involved with the neurodevelopmental research at UVM really haven’t done this stuff before, mostly at least.

And so we’re kind of learning and inventing stuff as we go along. And I think it’s actually like even the sort of subtle background stuff that we’re doing? Is pretty pioneering. I think  in the areas we’re looking at, like we really didn’t find equivalent projects mostly in the past. There were some around healthcare transition, but mostly it’s not been done that much.

Adrienne: Wow.

Michael: My research interests are are broad. I’m interested in being involved in a variety of things, but definitely I’m interested in facilitating the existence of participatory research, and getting that going and getting things documented in terms of different ways people are experiencing things. My interest there is partly to make sure it’s done well because I think often if you don’t ask questions really carefully, like you’re not really giving people an opportunity to express themselves who haven’t had a lot of practice talking about a specific issue. And you can not see the depth of what’s happening. So that’s why one the reasons why I want to be actively involved in that kind of thing is to just make sure it works right.

My personal interests though also go a lot into more like the realm of the neurocognitive demands of things.

So like, ideally, I would love to see more youth — like I think some of the things that inspired me when I was really trying to look at going that direction years ago were like there’s been a lot of research doing things like functional imaging of brain processes but virtually nothing done to actually utilize that information? And nothing done to make that research even useful to the research participant?

And I feel like there’s powerful cognitive tools and even, you know, like research tools that could be used to help better understand individual people in certain ways that I’ve been really — I think the potential of that been really misunderstood by the research community and honestly ignored.

Okay, let’s say with something like attention, for example. I think that’s one of the areas I struggle with most now in my life, is to be able to intentionally focus on specific things and, really be able to be productive in them on some level of a schedule with it, which is really helpful, even aside from all the external demands and maybe overt demands on that kind of thing, to be able to say, “Hey, I really like this. I’m going to choose to put aside five  hours at 2 p.m. and do this activity” and to be able to count on my brain working well at that time would be helpful.

And I think there’s a lot that we can do to understand what the barriers to the different cognitive processes are, and how to facilitate them and how to accommodate them, that we’re not really using the research tools we have to do.

If I really had the ability to really do what I want to and have the resources I’d want to, which would probably include a lot of ability to delegate pieces of things, I would probably try to get into some of that area and really advance the development of it and stuff.

But I guess if I had my personal dream, I would really be able to facilitate a program of research and try to really integrate things across different and tools and other kinds of stuff, build good theory around things so there’s no pathway for theoretical research that really exists in the field.

But a lot of times like, you know, all the research that’s been done is just integrated, haphazardly at the beginning and end of experimental research papers that not really, I think how we should be doing it.

And so like that’s the other kind of thing too: trying to understand everything, building theory around things that integrate like knowledge and then communicating it at different level of communication that really provide things from even very simplified plain language stuff to complex stuff that gets into the full depth of research but it is friendly for either a layperson or a person not familiar with a specific area of research. It’s possible to do things and understand things and stuff.

And the other piece of that  communication side of things that I think of lot of times in my field, is that things are thought of in terms of services and stuff. And I think for a lot of us on the autism spectrum, information can be the service sometimes.

Like if we have information that really tells us ways of looking at things differently, doing things on our own, do-it-yourself is a really powerful tool that that avoids a lot of potential conflict with providers. It avoids a lot of funding issues, and if we have things accessible, I think that would be part of the big change of things to.

Adrienne: That feels like a really positive note to end on.

I think we could probably talk for hours and maybe we’ll come back and talk again, but I just really want to thank you for your time for sharing so honestly from your own perspective, as well as just your role within our organization. And we really appreciate the work that the Advisory Council does to help inform the design and the direction that the Center’s work takes.

Is there anything else that that you want to say at this juncture?

Michael:  I think it I think it’s a good place to kind of wrap things up. I would say that it’s been definitely nice to have the opportunity to talk about some of this. And there were things I think we were thinking of talking about that we haven’t had as much opportunity to as we could. But I’ve enjoyed the opportunity to just really express some of these ideas and stuff, and I think it’s not easy to talk about this stuff fast, because there’s a lot of experiences to communicate about that don’t overlap most people’s everyday lives.

So I do hope that we can potentially do more of these conversations and because I think the way we did it today is great and it takes a long time to get at  some of the most valuable things.

So yeah. I look forward to any, you know, future version of what we do and I hope anyone watching that has gotten a lot out of this. And so yeah.

Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/lngsQprGl50

Dr. Valerie Wood hosts an episode of the podcast that looks at the recent RISE VT project: Restorative approaches Implementation for School Equity in Vermont. Her guests are collaborators on the project: the CDCI’s Amy Wheeler-Sutton, and UP for Learning’s Lindsey Halman.

Together, they explore what they learned through the course of the RISE VT project, and where they hope restorative approaches for Vermont schools go next. For a research summary of the RISE-VT project, visit go.uvm.edu/cdciresearch

A full transcript of the episode appears below.

Valerie Wood: All right. Welcome everyone to this episode of the C D C I Connects podcast. I am your host today, Dr. Valerie Wood, and I am a research assistant professor at the Center on Disability and Community Inclusion. And I am so happy to be joined today by Amy Wheeler, Sutton, and Lindsey Halman. so let’s start with you, Amy. Could you introduce yourself?

Amy Wheeler: Yeah. I’m Amy Wheeler-Sutton. I’m the co-director of the Best project, which stands for Building Effective Supports for Teaching. And we are housed at the Center on Disability and Community Inclusion at U V M. We’re fully funded by the Agency of Education to do training and coaching and technical assistance for supervisory unions, districts, and schools for them to be able to better support the social, emotional, behavioral and mental health needs of Vermont students. I used to be a school counselor in a school that was implementing Positive Behavioral Interventions and Supports, or P B I S.

Valerie Wood: So Lindsey, could you introduce yourself?

Lindsey Halman: Yes. Hi. My name is Lindsey Halman. My pronouns are she, her. I am the Executive Director at Up for Learning that stands for Unleashing the Power of Partnership for Learning. We are a nonprofit based here in Vermont, our office in Vermont. We work with schools, elementary, middle, and high schools throughout the state. And we also work with schools throughout the country along with organ organizations that we partner with the our organization really focuses on three things. So what is, or the why is that in order for schools to really change and meet the needs of all young people young people need to be at the table to have a say in their educational journey. and so that is what we call Youth Adult Partnership are what is whatever the schools, we facilitate a process. So it’s whatever the schools or districts are focusing on as their lever for change.

And how we go about that is through Youth Participatory Action Research. So all of our youth-adult teams engage in YPAR, Youth Participatory Action Research to make change in their school communities. and our office is in Montpelier, but we work, like I said, throughout the state and throughout the country. and a lot of our work is focused on the social-emotional components of schools, the climate and culture. And we do a lot of work that is focused on restorative approaches within the school setting, but bringing youth and adults together to understand what that means to transform a school that really is restorative.

Valerie Wood:  Thank you both for those introductions to your work and a little bit about who you are as people leading that work. I just wanna take a moment to express appreciation as we’ve had the opportunity to work together. I’ve really learned a lot from both of your teams about thinking about what does youth-adult partnership look like and how we can, we can be infusing more of that in the different efforts that are happening around the state in different areas. And then thinking about what I’ve learned from the best project and the PBIS implementation and thinking about the relationship between what’s the kind of knowledge and skill base that our teaching professionals need to be able to engage in that work with students in the most positive and affirming way possible.

So thank you all for the great work that you’re doing because we are at the Center on Disability and Community Inclusion. I did just wanna dive a little bit more deeply into how you see your work touching on issues related to disability, and in what ways does you know, your work help elevate or meet the needs of people or students with disabilities? So, Amy, let’s start with you.

Amy Wheeler: Yeah. So while PBIS is for all students and to help the educators to support all students, the systems and data, and practices that are implemented as part of PBIS particularly support those who have or are at risk of having social-emotional or behavioral challenges or those with disabilities. And so as we are doing all of our work, we’re really thinking about how can we best design environments that are gonna be inclusive for all students, and particularly those who have disabilities. and thinking about our you know, connection with Lindsey’s work and other sort of approaches as we’ve kind of evolved over the past few years, we are really thinking about how we can infuse restorative principles into all of the training and coaching that we do, and really thinking about how student and staff and family voice can be elevated and at the forefront of what we’re doing so that things are being done with others rather than two or for them. We also help schools think about the alignment and integration. like you mentioned, there’s a lot going on in schools right now. Lots of different efforts and projects and work and thinking about how all of those can be aligned.

Valerie Wood: Great, thank you, you shared a lot. There’s a lot to unpack there, and you’re starting to touch on some of the work we did together, but before we dive more deeply into that Lindsey, could you just talk a little bit about UPS role in helping to meet the needs of people and students with disabilities?

Lindsey Halman: Yeah. So at Afro Learning one of our core values is that we believe that educational equity is a basic human right. And so for us, that means ensuring that there is inclusivity and accessibility in every aspect of a school, of, of school life. And as a former educator, I was a middle level educator for 15 years in inclusivity and accessibility and equity were really at the center of everything that I was thinking about. cuz because we know it up, and I knew as an educator that if I center those, those components, then everyone is gonna, you know, be able to access their education and, and it’ll be engaging. and hopefully it will allow for success for all young people. So if we really center inclusivity and accessibility, that means that everyone, everyone benefits ultimately from that experience. When we work with school teams, we really sup work hard to support the adults on the team before we even begin to think about how they can create a representative team that is reflective of their entire school community.

And even once we get going with our work, we ask the question to the youth and adults who’s at the table and who’s not at the table, and how do we ensure that we can make space for those that that maybe have not always been asked about their opinions and ideas regarding their educational journey. And so that is a question that is always on our minds as we are doing this work throughout the entire cycle with teams, is how do we make sure that the voices that have not historically been heard, how do we bring them to the center of this work or to, you know, to really amplify those voices.

Valerie Wood: Great, thank you. And then I’ll just share my role on the projects that we’ve worked on together was as the evaluator and as I’ve had time to reflect on what we learned from the work we did together you know, my lens is really systems improvement and what does it take to create a more inclusive, equitable system that allows all people to thrive and experience positive outcomes. And you know, it, it’s kind of the season where you know, kids in the public school system recently brought home report cards and I was thinking about, you know, the grading system and this kind of idea, like it’s not re if a student is quote, failing, it’s not really a student that’s failing, it’s the system that’s failing. That system has failed to engage that student in appropriate ways that tap into their natural curiosity, their natural motivation for learning. And so, you know, I have so much appreciation for the work you’re doing and thinking about how you are contributing to systems change. So all students are kind of in a supportive educational environment.

Lindsey Halman: Yeah, I think, can I just like put an exclamation mark on something you just said? Is the idea that someone’s failing a class or, you know something is a systems issue, it is not about the, the individual, the young person, and yet at the same time our young people are receiving those messages and therefore they are then holding that piece, which is so much bigger, it should be so much bigger than, you know, them feeling that they, you know, either shame or failure or, or frustration or whatever those feelings are, that’s then what we see as a reaction to the system, right? So what we’re trying to do as a team is change that so that those kinds of, you know, that we understand how, what are the things that need to happen in a system in order for young people to not ever feel that they are a failure. Because really that is a mark that is the report card for the system.

Valerie Wood: Thank you. Yeah. And for the viewing and listening audience, I think they’re getting a sense of how our different philosophical approaches are really complimentary and we’re all kind of pushing the system in a similar direction. but let’s kinda bring it specifically to the Rise VT project. so that is an acronym which stands for the Restorative Approaches Implementation for School Equity in Vermont. so the acronym the the approaches was not capitalized, which from a grammatical perspective was maybe not great, but we wanted an acronym that would make sense for us. And let’s do a little jargon busting just to level set for the audience. so Lindsey, I’d love it if you start off like, and I ask this question of both of you, cause you, I think you both have slightly different things to add here. How would you define restorative approaches?

Lindsey Halman:Yeah, that’s a great question. so restorative approaches sometimes people hear restorative justice, restorative practices. I like to think of it under the umbrella of restorative approaches because it is an approach. it’s a paradigm shift, it’s a philosophical shift of the ways in which we go about how I would say our daily life. But when we’re thinking about the educational system, it’s a real shift in how we approach everything from behavior to relationships, to curriculum to policies, to the structures and schedules. So when we kind of take this like new way of looking at a school from a restorative lens where it’s about this concept as Amy shared earlier, this concept of width, instead of doing two and four we, we look at it with a new, kind of a new framework that what would it look like to develop really strong relationships where people feel like they are in community with one another so that they are in a community that cares about them, that knows them, that knows their name, face values and stories.

And then from there, what happens when we have conflict or make mistakes in communities? How do we support young people and adults in, in school communities in thinking about what happened and the impact it has on community, that ripple effect and what they can do to make things right or make things or to move forward. and then it’s also about looking at our, you know, our practices is a way in which we go about teaching. Is that a restorative way? Are we doing it with young people or are we doing it two and four young people are policies? Are they about two and four and kind of punitive and following, you know, being compliant? Or are we asking young people to develop the skills to have agency to feel empowered to understand how they can access an engaging education?

So sometimes I think restorative approaches gets lumped with like restorative justice, but that’s just one element of it is around like, how do we create different systems around what we might call like discipline that are that really center relationships that center a young person repairing relationships with themselves, with others in their community. but it’s so much more than that too. It’s not just about when things go wrong, it’s about really kind of looking at a school through a very different lens and what would happen if every step along the way. It was about seeing each other as full humans and centering relationships and getting to understand what each of us bring as strengths, but what also what are our challenges and opportunities for growth and and supporting one another in that way. I’ll pass it over to Amy to add to that definition cause that was a lot.

Amy Wheeler: . Yeah, I don’t know if there’s anything to add. but for us, I really think about, you know a whole school approach that’s really taking a proactive proactive creating the systems for proactive healthy school climates. really slowing things down from the pace that often education is operating within to be able to create space for people to learn about one another, develop strong and deep relationships and then rely on those relationships when things do go wrong so that people are invested in the relationships within the school building to be able to really think about what are others’ needs what can we do to heal and move forward. and to, to have that be the approach rather than thinking about, you know, what rule was broken or how can someone you know be punished or have a consequence for when something goes wrong, but rather think about how can we work together to identify the needs and the harm to be able to, to heal and move forward together.

Lindsey Halman: Yeah, I was just gonna pick up on something that Amy said. I think that’s like a key piece for folks is that our schools tend to op, operate from a very reactionary place. And this is really getting folks, you said the proactive how do we build stronger communities? How do we make a climate and culture that when you walk into school, it feels, it feels good, right? And I think we’ve all had experiences where you’ve walked into a place and you can, and it feels really good to be there and, and into in a school where it feels joyful and there’s engaging learning, but we’ve also had the experience where we’ve walked into places and it doesn’t feel that way, that it feels it just, you get kind of that gut feeling or you can feel kind of that the climate and culture doesn’t really feel joyful and connected.

And so we’re really, you know, the goal is to support schools, like Amy said, that whole school approach in building those proactive practices and skillset. And it’s a mindset shift. So our mental models, many of us who are adults, we did not function. We did not grow up in a system that was restorative. And so it takes a lot of time to change those mental models. And so that is the paradigm shift that you really need to take that time, as Amy said, slow down to really start to practice a different way of being.

Amy Wheeler: And I think for me, like when I think about it in my personal life, what really hits home is that idea of when something goes wrong rather than pushing people away. So in a school setting, you know, sending a student out of the classroom or detention or suspension or for my own child, like send her to her room, you know, like rather than pushing people away when things are going wrong, how can we bring people closer and hold people closer to really solve the problem? And I think one of the misconceptions about restorative approaches is that it’s maybe a soft approach or it doesn’t hold people accountable. And I think the biggest aha for me was like, we’re actually, people are actually having to work harder to be held accountable than when they’re simply pushed away and, you know, serving an in-school suspension or an out-of-school suspension, and then they just arrive back and nothing has changed. They haven’t had to do any work to repair what has gone wrong. and so for me, restorative approaches is actually a more active form of accountability than some of those more traditional approaches to discipline.

Lindsey Halman: And I would just add an also another piece to that too. I totally agree. And our, our many ways, our traditional system, the punitive discipline system or our ways of just kind of transitioning from one class to another, you know it creates a cycle for young people. And one thing that is really at the that’s important when you’re learning about a restorative approach is really looking at the neuroscience, the brain-based research around it. We’re, we’re talking about young people whose brains are rapidly developing. And this is a time for us to be, well, first of all, relationships are key to that development, positive relationships and recognizing that we all make mistakes, but particularly when we’re younger because we’re still, our brains are still developing and forming, right? And so it’s an opportunity for us to really then dig into the neuroscience, the understanding of how our brains work and, and how our brains develop. And knowing that when we take a restorative approach, we’re actually helping create really healthy, healthy development in our brains and connections in our brains so that we can be more healthy, productive adults later on in life.

Valerie Wood: Yeah. I appreciate what you both shared, and it makes me think about the idea that as you’re going through school, from an academic standpoint, you’re learning something new and you know, you practice, you practice new math problems, you practice, you know dissecting new pieces of literature, and it’s expected that you make mistakes, right? You’re not gonna get 100% on the test without that practice. And so, you know, when I think about what you both shared, it’s like socially and emotionally restorative approaches has that same frame of reference that young people will make mistakes, they should be allowed to make mistakes, but what is the response to those mistakes? Is it very punitive and kind of saying, okay, well you broke a rule. And sometimes, you know, the rules are very subjective and they’re very like culture-bound. and so some students, you know, that are coming from different cultures may not even be aware of a rule where they may not buy into the value of that rule.

And so I really appreciate that a restorative approaches allows for that dialogue and that conversation to understand the different points of view. And yes, there are times where harm has happened and so that definitely does need to be addressed. But I agree with you, Amy, that it’s actually holding people accountable in a way that’s like because it’s more person-centered, it’s more powerful that it, in a lot of ways it’s easier just to be sent off to the principal’s office and you just sit there and you don’t obs the student does absorb any lesson from that versus to hear from other students, this is the impact your behavior had, and this is how you can make this right. but yeah, it is a paradigm shift, and in a lot of ways, as we learned helping teachers understand what it’s gonna take to do it and do it well is really important.

One of the things that I appreciate about our team is that Amy, you brought a lens, and I know Lindsey, you have this too but I’m gonna pass this question to Amy. But thinking about restorative approaches within an mt s s framework or multi-tiered systems of support, so you’re kind of our resident expert on MTSS at CDCI. Could you tell us a little bit more about what a multi-tiered system of support is, why it’s important, and how it relates to restorative approaches?

Amy Wheeler: Yeah. So in Vermont, we kind of rely on the Vermont MTSS field guide, and that really outlines, you know, that MTSS is a framework it’s adaptable and should be made contextually relevant for each school or district. but it really helps bring together all of the supports that are available for students so that all students do have an equitable access and outcomes from their school experience. And so really thinking about what systems need to be in place what data should schools be looking at to know whether they are seeing success how can they approach things from a perspective of continuous improvement and really thinking about and examining areas that are places for growth within the school.

Thinking about how all of the adults collaborate together, what different roles people play to meet the needs of students, and thinking about how they can best organize their resources effectively and efficiently to meet those needs.

So we know there are some schools where individual teachers have been trained in kind of implementing the practices side of restorative approaches and that’s great that that teacher’s gonna have a positive impact on the students that they touch. But in order for all students to really experience kind of what Lindsey’s talking about, about this, you know, kind of transformation of education to be coming from a restorative approach, it really has to have this kind of systems-wide framework and perspective to be able to make change in that way.

And then I think the other kind of key piece of MTSS is that every student gets the level of support that they need. So for restorative approaches, we would hope to see that all students are experiencing a restorative approach in all of the ways that Lindsey mentioned, you know, in the design of the schedule and the curriculum in experiencing those proactive community building circles at the universal level and also at the staff level. So having opportunities for staff to slow down and create space and come together to learn more about one another. and then when those you know, challenges do occur and things do go wrong, how can we amplify and intensify the supports that are provided for students to be able to get at what needs to be repaired.

And then in the most extreme cases when, you know, students have needed to leave the building, whether it’s for an alternative placement or an out-of-school suspension or something like that, how can we make sure that they are reintegrated into the school community in a way that is supportive and reflective of all of the needs that are at play.

Lindsey Halman: I really don’t think you missed anything. I would just say that like, it’s I would just say for anyone, our listeners out there that one of the most important components is that like you, you people don’t look at these things as separate, like restorative practices or what restorative approaches, M T S S, you know trauma informed that they all are part of the MTS system, MTSS system that you’re really thinking about, you know, what do all people need in our community? What’s gonna help us be the healthiest, happiest, most engaged learning community? And then from there, you’re looking at then individually what individuals need to, and for them to be successful. But all these things are integrated into that system. So it’s not an, it’s not an add-on or another you know, initiative. It’s a, it’s should be part of that system, that tier one level system or the integration of all the different supports. And I’m not sure if that really was an add-on to what you said, Amy, but just that I don’t you know, we often hear that restorative practices is just another thing that we need to do, but it’s not, it’s really part of that it’s part of the system building and it’s both the engaging all people in learning the same practices and then applying some more personalized support to those that might need it at particular times.

Valerie Wood: I have a question for you, Amy which is, do all schools in Vermont use an MTSS framework?

Amy Wheeler: So it is in legislation that all schools do form a multi-tiered system of support within their buildings and districts, and I think different districts and schools are in different places in terms of their sophistication with MTSS, but that is the kind of design and hope of Vermont education is that all schools are engaged in multi-tiered systems of support.

Valerie Wood: Thank you for sharing that. And it, it sounds like a really valuable framework that they can utilize to help organize their efforts and kind of you know, make sure that there’s collective efficacy that everybody’s kind of working in the same direction towards shared goals. So let’s talk specifically about the RISE T VT project. again, just to repeat that acronym stands for Restorative Approaches Implementation for School Equity in Vermont. this project was funded by the Vermont Agency of Education and this was actually the second time we got to work together as a team on a con a contract from the agency education, looking at implementing restorative approaches in school settings. so how would you describe the Rise b BT project as an elevator pitch? I don’t know if one of you wants to go first, but like, in a nutshell, how would you describe what we did together on this project?

Lindsey Halman: Well, I can, can I do, I’ll try my elevator pitch and then I wanna back up a little bit. Is that okay? Sure. So okay. In my elevator pitch, the goal of this project was to work with schools or school districts that had already that was that, that were already on their journey to implement restorative approaches in schools or to deepen their learning around restorative approaches in schools. So in this particular Rise VT project, we looked at four different sites around the state, geographically diverse. we had an elementary school, we had a K-12, we had a middle high school, and we had a large system and pre-K 12 Burlington School District. And the goal was to take each site where they are partner them with a coach from the restorative approaches collaborative that I’ll get to in a moment.

And then and support them, kind of not taking them back, but kind of assessing where they are, what have we done so far, where are we at, what are our goals? And helping to support them in moving this work forward while also ensuring that young people are engaged in that work as well with their adult partners. there was also, as part of this project we recognize that we were only working very closely with four sites, and that there’s a lot of, there’s a lot of different levels of understanding around restorative approaches in Vermont. So from that understanding, we recognize the importance of creating a learning module, which is really an incredible body of work that takes schools that are maybe newer to the journey on their own learning experience to understand kind of what are restorative approaches in schools and what do we need in order to get our structures and systems in place to support this. And simultaneously we worked with a f filmmaker to create stories of Vermont schools that are doing this work. Yeah,

Amy Wheeler: I think you covered it all. I, I just wanted to point out the kind of reason we selected sites that were already on their journey was recognizing the kind of limited capacity that schools and districts have right now still due to the ongoing impacts of covid and wanting to select sites that were kind of well positioned for success this year, knowing that as we, you know, continue to move on past covid more and more schools and districts will kind of be ready for this work. and so we positioned those modules to be available as schools are, you know, starting to explore and, and look at their own implementation and the prospects in their school to be able to utilize those resources that kind of live beyond the, the timeframe of this grant. and then we also formed a community of practice with the fore sites so that they could come together throughout the year to learn from one another and you know, talk about any challenges and also develop some, you know, shared understanding through, through content delivery of some, you know, maybe new practices they weren’t aware of or new tools to help them grow in their work.

Valerie Wood: Great. Yeah, thank you for adding that. So, just to summarize it, the Rise BT project, we had the four different sites that we’re working with. They had teams that we were working with to engage in this work. We connected them. Many of them already had coaches that they were connected to, to your point, if they didn’t, we connected them to a coach. They were part of a community of practice where we pulled them together to learn from each other. There was the videography and documentation work that was happening that helped them have a story of their school and their journey that can be part of a showcase of this work in Vermont for their own learning, also for the larger community viewing. And we have the modules. So that’s, those are the different components of the project. And so in, you know, now that you’ve had some time to reflect on the work together, what did we learn? What would you wanna highlight for those that are viewing or listening in terms of what we learned from the project together?

Amy Wheeler: You can go first.

Valerie Wood: Go ahead, Amy.

Amy Wheeler: I think the community of practice element was probably the most difficult this time. and I think a, a piece of that was related to having those communities of practice be held virtually. and amidst of time in school where there are a lot of staff shortages you know, shortage of substitutes to be able to cover for staff to be able to attend certain professional learning events and just kind of limited bandwidth to be able to be thinking about this work. And I think there’s a, a like a yearning to connect with other schools who are doing this work, and also that kind of may be put on the back burner when other needs are arising as more pressing. so I think that was a learning for us and something we would, you know, keep in mind moving forward that, you know, in-person connection is really important and staff are pulled in a lot of different directions right now that make both in-person and virtual professional learning challenging which I think cause the schools to really rely on their coach and those coaching supports.

So I’m, I’m glad that we kind of foresaw that and kind of amplified the importance of coaching, and put some more resources toward coaching than we did the last time. so that schools did have the time to engage more deeply with the coach and to be able to utilize that coach, however, made sense for their school. so some of the coaches led in-service training, and some of the coaches facilitated circles with students. and so they were able to kind of design how they were gonna use that coach most effectively.

And then I think the other learning like Lindsey mentioned is really just that value of the restorative approaches collaborative. So we really leaned on different members to be able to provide different knowledge and skills and support throughout this project. And I think it’s a group that people really value and that will continue beyond this project and thinking about, you know, what structures are in place to be able to support that group to continue essentially as a, as a volunteer organization, as a, as existing right now.

Lindsey Halman: Yeah, I would add I would agree with everything. I think, you know, learning as well recognizing that people had kind of limited bandwidth going into this project. we really relied in many ways on teams that already had strong youth-adult teams at their site. So Waka Elementary was one, they already had built a culture around youth-adult partnership Proctor Junior, senior high school and Proctor, and then Burlington School District and Twin Burlington School District being the very large district Proctor, like I said, small Rutland County middle high school, and then Twinfield, which is a pre-K 12. they, all the sites already had some level of understanding of what it means to partner with young people in this work. And we’re very open to that. And many of the schools, three, you know, men, many of the sites also had strong youth-adult teams already that were engaged in work.

So they were it just really enhanced the work that they were doing and also allowed them to move to action quicker. And, you know, I think that pairing of Community Justice Center staff with other members of the restorative approaches collaborative was a very powerful model. And what we’ve noticed as a success is that in many of the sites, those relationships continue beyond the funding from the AOE. So now the schools continue to do work, they’re finding creative ways to seek resources to continue that work with their youth-adult teams because they’re recognizing the power of having young people engage in the thinking about planning and implementation of restorative approaches.

Valerie Wood: Thank you for sharing Lindsey and Amy, I’ll just add a reflection that one of the learnings I took away is we really mean it when we say to do this work, well you need to ask people to slow down and focus on the relationship building. And I think about you know, the various different relationships that we’re forming. So some people were forming relatively new relationships with their coaches. Some teams were at different places with their youth-adult partnership. And so were the, if youth adult partnership hadn’t already been established at a site, what was kind of the work that needed to be done with the adults and the youth separately before bringing them together kind of level, setting expectations, and then you know, just the process for the different sites to connect with one another. And, you know, to what you, the point you shared Amy, was the timing of it, while of it all was that schools and the people that were participating it felt like they were more stressed than they ever had been.

And so at the same time that we’re saying, please, like, slow down to focus on this work and focus on the relationship building they’re getting a lot of pressures to multitask to literally try to like be present in a meeting, but also attending to a student crisis and kind of coming in and out of conversations. And so you, there’s no real solution to that. But one of the things we did put in the final report was for school professionals and really their administrators to think about if you have a team that’s eager to engage in this work, and again, I think it does go to that like systems approach what are the supports that can be put in place to really release that team from their day-to-day duties to be present in the activities of the project? Because that’s how, when they can fully attend to the, you know, the activity whether it’s, we frame it as a learning activity or just like a relationship activity, which is still a form of learning that split attention is so hard for anyone to manage. And so that’s how they bring it back to their site.

Lindsey Halman: Yeah, I think that’s like, I just wanna like put an exclamation point on this, that idea of time. I always think of like the comparison of like, there, there’s like the slow foods movement where people, I don’t know if it’s still a movement. I’m sure it is, but there is a lot of attention on like, what are we putting in our body? our bodies are what get us up and moving every day. It’s what gets us, you engaged in life and like, what are we putting in to help nourish those bodies? And so if we think about like, the body as a container, well the school is the container, what are we putting into those schools to really nourish and support engaging and joyful learning environments?

And so it’s the relationships, it’s not the math curriculum, it’s not the, you know, the, the really cool science lab. It’s, it’s the relationships. It’s like we need to nourish the relationships. We need to slow down and think about the relationship building those, taking time to really tend to the relationship, getting to know young people and getting to know each other as adults, colleagues too, in order to have a healthier system. So like the body system, you focus on the food going in, slowing down in the, in the school system, you focus on the relationships, slowing that down so that you can put more time into relationships.

Valerie Wood: I love that comparison, Lindsey. Thank you. And I think it leads nicely into our next question, which is, what was the most surprising thing you learned from this project? And it could be a personal reflection or it could be, you know, something related to the outcomes we looked at. So it’s, it’s meant to be a broad question. What’s the most surprising thing you learned?

Amy Wheeler: I don’t know if it’s the most surprising, but something that was kind of an aha moment for me was recognizing that the videography component, the documentation didn’t need to just showcase, you know, exemplars or like when this is really well implemented and kind of what schools are striving for, but that it actually would be more powerful to kind of embrace the, the difficulties and the challenges that schools come across. You know, what have they done to overcome them? What challenges are they still experiencing? and give that kind of full picture rather than kind of presenting a rosy image of, you know, a perfect implementation which doesn’t exist.

And I think that our videographer Ned was really able to get at that and to be able to kind of show both some, some really great successes and also where the kind of pain points are. so that was really helpful for me to kind of reframe, you know, videos don’t need to just be, you know, kind of this clean, polished version of, of what things could look like in schools.

Valerie Wood: So I was wondering what do you both see as some of the wider implications of this work together? What do you see as the, some of the real-world impacts?

Lindsey Halman: I’m hopeful that out of this particular project, that more schools will now have access to these really rich resources, the module, the videos, the report, the directory of practitioners. And so once you can start to see stories and hear stories and you think, okay, yeah, this, I too can do this, or we can do this together as a community. So I’m hoping it’s, you know in many ways like a movement building and that schools are really taking some time to think through. it’s been the, you know, the past couple of years have been incredibly challenging for schools and school systems and how can we continue to support schools in taking that time to focus on relationships and each other and community. Cuz that’s, that’s the only thing that’s gonna build our health as a system, right? And so I’m hopeful that that, you know, kind of like this will like light a spark for others and that they can learn from schools that are right down the road from them or in other parts of the state.

And that will have more and more schools engaging in this level of work. There are a lot of other schools that are already on their restorative journey and so I, it’d be great to just continue to network schools together to continue that like idea of a community of practice so they can learn from one another. Amy and I both served on the Act 35 task force, which was tasked with creating a report with recommendations for ways in which to go about reducing and or eliminating exclusionary discipline in schools. And a couple other things too that said, there was a list of recommendations that were created by a very strong group of young, of, of people professionals and young people from across the state that we hope that people will actually look at and think about how do we change our own policies.

I’m not, you know, even if it’s not state-level policy change, but local policy change and that we are seeing systems, one of our schools districts our sites, Burlington School District, they use the Act 35 report of recommendations to create a restorative code of conduct. And I think that’s a model for other schools to look at. So learning from one another, okay, what is our restorative code of conduct? What would it look like to really reimagine what our code of conduct could be from a restorative place? So I’m hoping that more and more policy change will occur and we’ll see more and more restorative codes of conduct and restorative policies in place so that so it’s not just, you know, practices that are happening in pockets in schools, but that it’s really a systems level approach.

Valerie Wood: Great. Thank you, Lindsey. Amy, any reflections you wanna share?

Amy Wheeler: Yeah, I think it’s gonna be important forward, you know, thinking about how we can help schools think about this in a streamlined approach, like Lindsey was saying, like, you’re not adding on restorative approaches or you’re not doing this instead of doing something else. and in something that keeps coming to mind is the workaround community schools in Vermont and thinking about how we can help amplify that work and think about embedding restorative approaches and practices into the work that those schools that are working on community schools work right now. how they can think that through and then be models for other schools in the state to be moving toward that community schools approach. and so that’s kind of keeps coming to mind about how we can increase our involvement there.

Lindsey Halman: Yeah, because one of the pillars that is also unique to Vermont of the community schools model is safe, inclusive, and equitable learning environments. And this is really fundamental to that work. So again, it’s not about like this piece here and this piece there, it’s about looking at it as an integrated systems approach. And I agree with Amy that I think that’s an area that we can really leverage around community schools and the model to create schools that really support all aspects of their community.

Valerie Wood: Thank you both for sharing. And when I think about the real-world implication implications I agree with you both that the need for this kind of work and this kind of approach, it’s only gonna grow. And I’ll share a story that was told to me by a friend of mine who works in the school system. So she’s a kindergarten teacher and she talked about the fact that she has kindergartners entering her class now that were at the beginning of the pandemic. They had all, they had no kind of pre-K education because everything was shut down, right? We had the temporary closing and then we had the more permanent year of learning from home, I guess is the term I wanna use. and so she has students that didn’t have the opportunity to practice those social skills and behavioral regulation skills that they normally would’ve gotten in a pre-K or early childhood education setting.

And she is just wondering like, how does she go about helping to meet the needs of so many students that have kind of escalated needs in terms of learning those skills? And so, you know, if I think about the traditional school model with a punitive disciplinary approach, right? You know, that looks like giving kids time out or sending them to go, I don’t know what they do nowadays, , because if my kids haven’t been in kindergarten for a long time, but that kind of exclusionary discipline where they’re somehow being removed from the classroom until they’re kind of like calm again and being regulated again. And we just know, we just know that’s not gonna work and that’s going to be detrimental for so many kids. And so more than ever, I think we need to get the word out about what restorative approaches are.

I do some myth busting as I think you both touched on earlier in the interview it’s not a kind of soft approach, if anything, everybody has to work a little bit harder, but in a positive way that has real implications for relationships and wanting to continue to be in school, wanting to continue to participate in your own education, wanting to continue to be an educator, right? How many educators have left because they’ve gotten burnout, right? But if they could focus on a positive relationship with their students, then you know, that becomes so much more gratifying than the tra what the traditional approach has to offer.

Lindsey Halman: I was just gonna say one thing, and it goes back to what I said earlier about the developmental stage and brain development, is that I think it’s easy sometimes as adults to maybe forget that our, you know, the social-emotional development, you know, that our young people have missed over the past two years is extraordinary. It’s like, you know, multiply it by 10, you know, that’s how much development, you know, they missed. And so again, going back to slowing down and go and, and perhaps really then thinking about, okay, if this was what was missed, we need to teach these skills. These are skills that need to be taught. We don’t just learn how to sit in a circle together and, and pass something around or, or not talk out to, you know, when someone else is talking and to listen deeply to one another.

These are skills that we must practice. They’re lifelong skills. They’re probably the most important valuable skills that if we take time right now to really think about how do we work together, how do we collaborate, how do we build a community that holds each other accountable? And that’s that hard work too. It’s like peer-to-peer accountability. I think that, you know, we, that’s gonna pay off so much more down the road if we can just kind of take a step back and say like, what is missing right now? You know, what have our young people missed in their development, in their development just because of the nature of our, of our, of our world right now? And let’s take some time to really learn and practice those skills so that they can be successful human beings.

Valerie Wood: Yes. I exclamation point on that too, Lindsey. and so if we do a little visioning towards that future that we wanna imagine together, thinking big, what are your hopes and dreams for restorative approaches in our state?

Amy Wheeler: I mean, broadly, I would hope that all schools and districts are moving towards transforming their learning environments to be taking a restorative approach and to be really keeping relationships at the center and understanding what that truly means. and I think, I think what’s going to get us there is a really sustained focus on this work. I think what we’ve struggled with the past few years is kind of, you know fits and spurts, is that the phrase? That’s okay. Where we’ve had some momentum and some resources to be able to devote to this work and then some lulls. and I think in order for schools to really make growth and to be able to sustain their focus on it, I do think there needs to be a statewide focus on this work with sustainable funding sources so that this work can continue. And I think what we know about implementation science is that these kind of one-year one-off projects while useful are not gonna lead to the type of outcomes that we’re looking for for our schools. and so thinking about how can we take a statewide approach to this so that all of our students can, can benefit from this transformation.

Lindsey Halman: Yeah, I would, I would just say ditto to that. And I hope and dream would be that like every school is using a restorative approach in, in their schools and is on the journey and some, some aspect you know, in the coming in the next year, 2, 3, 4, 5. But just like Amy said, it’s long. This is long-term work in order to have sustainable systems in place and to change a system that has been operating in a particular way for a hundred-plus years, right? And so to reimagine or transform a system, it takes time. So there needs to be resources in place and time for school communities to really dig into this work. And so that would be my hope too.

Amy Wheeler: I always say like, you don’t want your child or your nephew or whoever to have to be lucky to get like the teacher who has these skills, right? Or the school who is taking this approach. all students in Vermont should, should have equitable access to schools that are safe and inclusive, and equitable.

Valerie Wood: Great. Well, are there any closing thoughts?

Lindsey Halman: Thank you, Valerie, for letting us have this space.

Valerie Wood: Yes. Thank you for being here today, Lindsey. Amy, any closing thoughts?

Amy Wheeler: I don’t think so. It’s just been kind of nice to reflect on the whole process and see where we might be headed.

Valerie Wood: Great. All right. Well, thank you for your time today into our listening audience. We’ll see you next time. All right. Thank you everyone.

https://youtu.be/nhtCfZ121OM

In this episode, we are lucky enough to have author and disability rights advocate Hannah Setzer join us! Setzer runs the hugely popular instagram account @feedingtubefitness, and just released a new book: “I’ll Pray for You (And Other Outrageous Things Said to Disabled People)”.

She joins the director of the Vermont Continence Project, Chayah Lichtig, as they discuss disability, pre-conceptions, instagram as both a community for people with disabilities and a public arena, and of course, the outrageous things said to disabled people.

A full transcript appears below.

Chayah: So I would like to start with an introduction, and it’s just and I don’t know you at all, we’re meeting for the first time, but I’m introducing you based on, having read your book, followed you online, and also read a bit about you from different content on the internet. So when I get to the end, I would love if you fill me in if anything is wrong or if anything is — if I left anything out, and I’m sure I’m going to.

Hannah: Sounds good.

Chayah: So Hannah Setzer is a self-described joyful rebel. Some of the many hats she wears are homesteader, business owner, foster, and adoptive parent, community activist and organizer, social worker, and disability rights advocate with the Disability Law Center of Virginia.

Hannah is a fierce athlete and at this point is probably best known for her Instagram page, Feeding Tube Fitness, where she shares serious and funny fitness and health content, inspiration, thoughts, and the occasional dead-on rant.

She regularly encourages her online following to move in whatever way makes them feel good and offers physically and financially accessible ideas for fitness and movement.

Hannah is the author of the funny, touching, and thoughtful book “I’ll Pray for You: And Other Outrageous Things Said to Disabled People.”

Hannah: Spot on. Spot on. That was great. You should just like follow me around and introduce me to people. Cause that was better than I could do.

Chayah: *laughs* I could send it to you. And you know what, the farther I read into your book, the more impressed I was with all the extraordinary things that you do with your life and all the things that you’re passionate about.

Just so you know a little bit about me, because you know, before this moment you probably only knew

And a lot of our work is centered on this idea of access and participation regardless of skill, regardless of disability, and so I’m sure you can see why your message and your work online really spoke to me.

When you put out the call that you were looking for some places to publicize that you had written this great book, I really jumped at the opportunity. My two areas where I do the most of my work are like, early childhood practice, birth to three (or birth to five), and then also continence.

So continence care is a big part of my work. So that’s me; that’s what I do.

And so a lot of my questions are obviously kind of grounded in that. And you know, at any point during this interview, if you feel like what I’m saying or how I am kind of framing you or your work doesn’t feel authentic, totally feel free to let me know that. Totally feel free to help us realign. I do have a bunch of questions, but we’ll see where our conversation goes.

So the first question that I wanted to ask you is actually about the title of your book and the concept behind your book. The title of your book includes the words, “other outrageous things that people say to disabled people.” And you know, we’ve heard a lot of them in my line of work, and I don’t know, this might be like a sour jumping-off point, but I’m wondering if you could share a couple more of the ones that just like really have either rubbed you the wrong way or kind of like shocked you for how totally not insightful they were. *laughs*

Hannah: So it’s not always like things that people just say, sometimes it’s actions. And literally I can tell you an example that happened an hour ago, and I was like: good timing.

My husband and I stopped so he could get lunch at a food truck and when he stopped and he placed his order and the woman told him the total and I had cash, so I pulled out cash to hand to her and she said, “Oh, the food is for her, not for you?”

And he was like, “No?”

She was like,  “No,” like, “you don’t have to pay. You don’t have to pay.”

And he was like, “Here. Here’s the $14.50”, or whatever.

And she was like, “No, it’s for her, it’s not for you. She doesn’t have to pay.”

And my husband was like, “…what is happening?”

And I was like, she like, feels sorry for me, because I’m disabled and she’s not charging me for food because she thinks I can’t order my food by myself and then you had to order.

And he was like: “No way.”

And I was like: “Yes dude. Like, that is what’s happening.”

So we left a tip, and we took the free food. Like, if that’s the choice that you want to make, and an assumption that you want to make, who am I to stop you? Like, hey man, I’ll take the food.

That just happened today. But my husband and I own a business. We sell physical handmade products and one time I was at the farmers market selling them. Just down there selling them behind that table, and a guy came up to me and said, “Who told you you had to do this?”

And I said: “What?”

He was like: “Is somebody paying you to be here?”

And I was like: “…no?”

He was like: “Well that’s not right. Somebody should be paying you.”

And I was like: “What are you talking about, dude? I’m just at a market. Like, other people are selling stuff too.”

Then he handed me $20 and was like: “It’s not right that you have to work for somebody else and not get paid. I hate having people exploit disabled people.”

And I was like: “Okay…”  I think he thought I was l somebody’s puppet, sitting at this table while they were out doing something. So I took his $20 and I was like, “Thanks dude!”

Chayah: *laughs*

Hannah: I was like, I own this business. Like, I’m the business owner, and this is my product I’m selling. And I think he just could not imagine the possibility that a disabled person person would own a business. Like be out selling stuff, without being forced to by some other person.

Chayah: Right.

Hannah: Yeah people, I mean are just like wild. Like and I had the lemon light on like the woman today. Like I have tattoos. Like, I don’t know. My face looks how it looks. I’m the one that had the money. I pulled out the money [at the food truck] today and the lady was still like,  “Oh, the food’s for her? It’s free.”

And I was like: that’s on you.

Chayah: It’s so interesting. I’m sure that you’ve heard this term of “visible disabilities” versus “invisible disabilities”, and how many people with invisible disabilities are treated incredibly poorly in society, because people may not realize that they need certain accommodations, right?

And in some ways I hear from you that you have the opposite thing going on in your life.

Where people see that you have this disability, that you have this facial difference, they see your trach — or whatever it is — and they make all kinds of assumptions about you. Which on the one hand right, even if you did require certain accommodations, they’re not doing it in a way that’s respectful or personal to you. That’s just demeaning you as a person, right?

Hannah: Yeah.

Chayah: It’s just so interesting. So many of the stories that you told in your book, it was so clear to me the resilience that you have developed. And resilience doesn’t just mean being super tough, right? Sometimes it means being super vulnerable. Just to say like, “This sucks, and I don’t owe you an explanation.”

Hannah: Yeah.

Chayah: I was thinking near the beginning of your book you wrote about all the people who tell you they’re gonna pray for you, and how often you hear that. And I was reading this other book last summer that I absolutely loved. The name of the book was “Maybe You Should Talk to Someone” — I don’t know if you’ve heard of it?

Hannah: I haven’t.

Chayah: But it’s a great book and it’s written by a therapist. And she talks about how she was getting sick. And how so much of the phobia about getting sick is that it puts you in touch with your own mortality. It puts you in touch with this idea that anything could happen to anyone at any time, right? Like, I could get in a car crash this afternoon that would change the course of my life. I could have a baby who had  a significant disability or some other need — I’m trying to wrap my head around what I’m trying to say.

It’s like that people will tell you that they’re gonna pray for you as if number one,  you’re not praying hard enough for yoursel and that’s why you’re like this, and also that you don’t care enough. Or that this is the thing that you need to care about and the thing that you need to be healed from. I’m just wondering if you could speak to that at all.

Hannah: Yeah, I think it’s just a big assumption that people have when they assume somebody who is different: to assume that different is negative or different means they have to be fixed so that they look the same as everyone else does.

So in the book I talk about a woman who came up to me at a church that I was visiting, and didn’t introduce herself — I didn’t know anyone in the church, this is my first time visiting this church — and she came up and put her hands on my head and started praying for me and speaking in tongues.

I was so uncomfortable, and took her hands off me and walked away.

Yeah, it’s just crazy the audacity that people have to assume that they know what I need in my life or what should happen in my life without even knowing my name. They know nothing about me. And it’s just very

Chayah: Yeah.

Hannah: Or… like you said, like that I don’t care or that I’m not doing enough to be fixed and be healed when they don’t know my medical history. They don’t know that I’ve had sixty surgeries in my life. I’m 32 and like, a lot of things have been tried. *laughs*

Chayah: Yeah.

Hannah: I think this is the best it is going to get, and that is okay.

Chayah: Totally. And also that like if you’re healthy and you like your life, right? And healthy is defined by the

Hannah: Yeah. And certainly that goes beyond disability. That goes into like weight and fitness and just runs the gamut as people — as society — still think that thin is the way to be and that is superior and that’s the goal you should be striving for. There’s many billions of people on earth and nobody looks the same and it’s beautiful that we’re all so different. I don’t know why it’s so hard to celebrate that cause it certainly shouldn’t be, but I dunno.

Chayah: Yeah, yeah. I wanted to talk to you about the chapter where you talk about being not being an inspiration? And now I’m gonna have my Terry Gross moment and I’m going to actually — if you don’t mind — read it because I just love what you wrote and I’m gonna read for a moment. You said:

I’m not inspirational. If I had a dollar for every time I was told I was inspirational, I would be sending all my friends to space in our own rockets because I’d be so rich. The world loves to label people with disabilities and medical conditions as inspirational. Living my life with surgeries and medical devices does not make me inspirational. Simply existing as a person in a world in society that doesn’t understand me and doesn’t accept me isn’t inspirational, I think we’ve twisted the meaning of ‘inspirational’. It’s become something that

‘Look at that person, they’re so inspirational.’

But if you actually look at their lives, chances are they aren’t doing anything inspirational.

Chayah: And then you go on to talk about your own life, and also, you know, friends of yours who have disabilities who are called inspirational just for existing. I’m assuming you’ve heard the term ‘inspiration porn’, right?  I work with kids who are often born with or very early on, there’s something identified as either a medical crisis or a pretty clear indicator that developmentally this child’s gonna need a lot more care and support.

Their families are often sort of processing and even grieving the fact that their life with their child and that their child’s life isn’t gonna be what they expected.

And a lot of times our work and our team’s work is to like remind families and their local providers — because we’re consultants — that this is a real whole person right in front of you. Regardless of

And I think the flip side of this coin is to like feel inspired like you were saying, by the very existence of people with disabilities, you know, buying toilet paper, getting on a bus.

And so the question for you is: what would you like folks to know about your experience of being told that you’re an inspiration while doing everyday things?

Hannah: I mean it’s just ridiculous. Like I said in the book, I think people often use it in earnest and kind ways. But I think it always tinged with a bit of like, “Ooh, I’m glad that’s not me. That has to be so hard.”

To be very honest I catch myself sometimes saying that too. Like if I’m watching a video on Instagram and a disabled athlete or someone doing something really impressive I often am like, “Dang. She’s inspirational.”

Then I have to sit there and think: why do I think that? Is it because she is doing this crazy athletic thing that I can’t do and that is inspiring me to strive harder to be able to do that particular exercise and particular movement?

So I think you just have to think why you are saying things and I have to do that too, certainly.

I said in the book like, my friend is in a wheelchair, and she gets told at the grocery store: you’re so inspirational!

And she’s like: “I’m literally just shopping for toothpaste. There’s nothing inspirational about this.”

I don’t mind being inspirational if it inspires you to do something? Like if there’s an action or a change in thought behind it? Like:

But if I’m simply… being told “you’re so inspirational” and there’s no like, “because” behind it, like “I want to be inspirational because XYZ” and that reason cannot be simply existing. It has to be because of something I’m doing. And in turn that has to make you want to hopefully take action behind changing something in your own life too.

Chayah: Yeah, yeah. I wonder like if I troll my own thoughts, I find you to be incredibly inspirational. And I find you to be incredibly inspirational the farther I read into your book. Because I was like, she does that, too. She does this other thing, holy cow. From the beginning of your book, you make it so clear that you’re like, if I believe in something and I care about something, I’m gonna go get it done and I’m gonna be a part of it.

And I find that so inspirational. And I wonder if like a lot of the message under people just labeling people as

And I think, I think it might be like a statement about… how each of us sees ourselves as not capable. You know what I mean? Like, oh, well if my life were hard then, you know… How many parents with children with special needs that I work with are like:

“I’m so tired of other parents telling me, ‘I couldn’t do what you do.’ It’s like, of course you would do what I do. It’s your kid, you take care of them. It doesn’t make me inspirational. It probably just makes me more tired. Like, I’m just out here trying to be me.”

You know what I mean?

Hannah: Yeah I hear that a lot in two other ways in my life. One as a foster parent, people would be like: “I can never do that. Like, you are so amazing”

And I’m like: “…But I’m nothing special. I just know the overwhelming statistics and how many kids needed

Are there kids in our town that need places to be like a safe place to remain? Yes? Okay, sign me up.

I also see it all the time on Instagram when I post fitness-related things and people are like, “Oh my gosh. I’m not disabled and I can’t even do that.”

I’m like: you probably could, you just don’t like to put in the effort. I am choosing to put in the effort. Maybe that’s inspirational, maybe it’s not. I don’t think every choice we make has to have inspiration attached to it.

There’s literally this determination and hard work that people can choose to do. That’s it. I pay to join the gym. I budget time in my day to go to that gym — that’s a choice that I make not having anything to

But I think when people are disabled, it always does come back to that because people want to

Chayah: Yeah. You know, that’s something I was wondering about as I was reading through your book and actually kind of aligns perfectly with my next question,which is about your Instagram presence, and your feeding tube fitness account.

I got a big kick out of you saying that you started your account because you wanted free leggings.

Hannah: Yeah totally.

Chayah: Totally right. I get that, for sure. And you also talk later in the book about your dawning

And I’m wondering: did the fact of having a visible disability impact your decision to build a social media

Hannah: I totally think just the fact that it was there.I like had a New Year’s resolution in 2018 to move my body for 30 days straight. And then 30 days turned into 50,  into a hundred, and literally my real life friends were like, “We’re tired of you talking about this. Can you make like a fitness Instagram and like, talk to other people?”

And so I did.

No, it was no real intentions.  I just didn’t know that the fitness industry was so big. I had done several half marathons and played like in intramural sports in college that had never been in like the fitness world like I am now. I just didn’t know how big it was and how not-diversified it was.

I have learned a lot from building this community that I never anticipated. Honestly it was four and a half years into my journey of movement, before I ever stepped foot inside a gym. I was just doing everything at home by myself. So I didn’t really know what it was like to move out in the community as disabled and at a gym. And in June of 2020 I got invited to go to the crossfit gym in my town and I was terrified cause I was like, “Huh. I have never done it like that.”

And clearly like not one single moment that I had been in that gym — not every day but many times since June — not one single moment have I felt out of place. Not wanted, not accepted — really from the minute

Like, some days, my feeding tube will just not be happy, and I go and it’s like, “Coach, I can’t do half the things today.”

And they’ll be like: “Alright, let’s do this, this, and this [instead].” Without batting an eye. Without feeling annoyed. Just: this is what Hannah’s doing today. No big deal.

Right now there’s a worldwide Crossfit competition happening. It’s over three Friday’s, and I’m going this afternoon and one of the things that you have to do is put a barbell on your shoulders, which I don’t do because of my trach. I was just doing dumbbells instead. And it’s like: okay, noted. Nobody cares.

I’m in there working hard, everyone else is working hard and I feel so supported, which honestly I did not know that you can feel in the gym just cause I had never been a part of one. So I’m grateful to have the gym I have and just to know that there are spaces in the fitness world where people are celebrated and accepted, and not assigned things that make them feel inadequate and less than. Like, no. We’re going to celebrate you and what you can do. If this is what you can do, awesome. Let’s do it.

Chayah: Yeah, there’s so many things about what you said that are really like lovely and really encouraging to hear, I think especially for people who are, you know, feeling a little more hesitant about like, getting into being part of like a fitness community.

And I also just wanna say that one of the first things that you said was basically that you kind of forged this on your own for years and that in and of itself is the part I find the most impressive. Because if I’m not following a class I’m gonna go sit down. *laughs* That’s my vibe these days.

I was thinking one of the things that I really love about your Instagram account, one of the things I come back to again and again is that, you know, you regularly celebrate your wins. Like, you know, a taller box jump, or a heavier weight for a certain exercise.

And then also I love that you guys do these like really funny and enjoyable stunts either with your husband

Hannah: I think, and I talk about this in my book too: I do not think that I am like, the most fit person in the world. The strongest, the fastest, the most beautiful and the most like, well-spoken. I don’t think any of those things about myself, but I am willing to put myself out there in the world in hopes that society at large can see a disabled person doing all the insane things that I do.

Because growing up I didn’t ever see representation of anyone that looked like me certainly. But there were not disabled people as a whole in the media, you know, like don’t need to be anything, magazines. So if I can go first, I’m happy to. Again: not because I think I’m the best and I should be out there as like the poster child of disabled anything but If I can be a gateway to another disabled person saying, “Oh my gosh, I can try this” or “I always wanted to pursue fashion and pursue modeling” or whatever, and they see the video that I had of me like walking on the runway — again not because I’m like A+ runway model — cause I’m not– but those things are things that other people train even if they’re not my things like I can do.

I am happy to go first, I’m happy to be out in world, doing these things, having it on social media, even if I am failing. But you know, people on Instagram, if I post anything at the gym I always get comments of like, “you’re doing it wrong” and blah blah blah.

Like, who gives a (beep)?

I’m out here doing it and hopefully that gives somebody else the confidence and the encouragement to do the thing that they want to do too.

Chayah: I think that’s super thoughtful and I feel like we’re just gliding like butter through these questions that I have here. Because my next question was about how you talk about how exhausting it can be to put yourself in the spotlight, and I hear you saying you know, that the people who you’re really wanting to touch are not all the people who want you to be an ambassador to the like, non-disabled world, but it’s really helping other people who have disabilities out there to see that there’s a community out there that they can feel connected to.

Hannah: Yeah, I think it’s really important and really beautiful to have visibility and representation. and

And I get sad every time I see those videos. It’s just so important. And I just think about all the little disabled girls and boys who are just longing for the day that they can feel included and see themselves as a Disney princess. They’re ready, you know?

Community is so important, and growing up I just didn’t have that. Honestly, it wasn’t until college that I had my first disabled friend. I grew up with my parents not using the term “disabled”.  They were just like, “Oh, Hannah has a medical condition.” A friend from college has cerebral palsy and she had parents saying: you have a disability; you’re disabled.

We had a lot of come-to-Jesus talks. She was like: “Hannah, you’re disabled.”

And I’d be like, “No, I’m not.”

And she’d be like, “Yes, you literally are.”

But because she was my best friend it’s okay that we had these conversations. That process, to me, of accepting this identity has truly just opened up this whole community that I didn’t know I was missing, and didn’t know that I needed until I found it.

And it was so beautiful.

I’m so appreciative that the story I told in the beginning about the lady at the food truck today, I posted that on Instagram and I instantly sent it to all of my disabled friends and I was like, tell me this hasn’t happened you because I know it has.

There is something about feeling known and seen, and like laughing about these ridiculous things with other disabled people that is unmatched in the world.

My husband is amazing and so kind and patient that he’s not disabled. So like today I had to tell him what was happening at the food truck.

But then I texted my disabled friends, and they’re like, oh yeah. They got it right away, totally. They knew.

Chayah: I mean that is really such a story of sort of social media and the media sphere being like, a force for good that you talk about all the people that you managed to connect with through that. I wanted to read one more thing that you wrote, and it’s after you talk about some experiences you had as a kid: you talked about going to the zoo and a child there singling you out and bullying you.

Then you said,

These days kids can get picked on by millions of people all across the world at the tap of a finger. We speak out against all these horrors, but we give life to more and more pathways to have access to people.

There’s more representation now than ever, but it still comes at the cost of hurt people behind screens. A new kind of exhaustion sets in when you allow yourself to be public and thousands of people are entering your home and saying whatever they want to via a four-inch iPhone screen.

Oh man. My heart just really  went out to you when I read that. And I was wondering if you’d be willing to speak from your experience now being very much in the spotlight and in a very public identity. What can communities of allies do to make virtual spaces safer and more supportive for people like you who are really putting yourselves out there?

Hannah: Definitely listening to us when we speak, and respecting the words that we use. My best friend Ashley that I was just talking about, with cerebral palsy, she has a big account as well on Instagram and she’ll refer to herself as a disabled woman. I do the same on my account. And every time we get hundreds

If I’m out here in the world calling myself a disabled woman then you need to listen to that and respect that, and use that terminology. I’m sorry if that makes you uncomfortable because society has not always used that term in a positive way. But we are the experts on ourselves, and that goes for everyone.

You’re the expert on you; I’m not. So if you said this is what I want you to call me, this is how I want to be talked about. Okay! I respect that!

It’s really just as simple as that.

When disabled people are talking, listen and respect what they say and don’t try to tell us that you know differently or that you know them better than they do.

I think that’s just a common courtesy that society in general is missing these days: respecting people and who they are and they let out in their lives.

And definitely it applies to disabled people, but I would say society as a whole.

Chayah: Thank you that’s really, really well said. It’s your point about like how the word disabled was really considered to be sort of a dirty word for such a long time. And for people, you know, for people with disabilities to reclaim that word and say like, no it’s not a bad word and it can describe me and that’s okay.

I think, you know, I think it goes back to this idea that people are afraid, right, often afraid of like,

“Oh my gosh, what if that were me? I wouldn’t want someone to call me disabled.”

You know?

Hannah: Yeah. I have friends in wheelchairs that refer to themselves as crippled. And I think a lot of disabled people are reclaiming this vocabulary and this terminology and like I said it might make you uncomfortable but I think it’s something that we just have to be okay with and accept and respect. I think that there’s the other like minorities too. It’s not just a thing that disabled people are reclaiming terminology. I think that is happening in a lot of different groups these days and like.

I’ll talk to older generations and say disabled person and they’ll say, oh no you’re

And I’m like, no.

It’s crazy. Disabled persons. One less word to say. It’s easy, it doesn’t have a bad connotation.

And they’ll be like, “No, person-first language is better and has you as a person.”

I’m like: Yeah. I’m a disabled person.

It’s just like: I’m still a person either way, I’m just trying to save a word.

Chayah: Yeah, yep, that’s absolutely spot on. I had a another question that was kind of about media representation of you and media representation of disability. And when I was preparing for this interview, I read your book and I also searched online to find, you know, information that maybe you hadn’t posted about, or kind of details about more things about you.

And what I found really difficult was to find information about you and your work.  I don’t know if you have  sense of what I’m about to say, but every single headline — with no shade thrown to anybody — every single headline references your disability in a degree of detail that seems wholly unnecessary. Right?

One headline was like, Woman Who Can’t Smile Becomes Disability Rights Advocate.

Another one was, Woman Can’t Close Her Eyes or Shut her Mouth after Dr. Blunder.

And it was like, if I’m reading correctly, that happened when you were an infant. But this is an article about your fitness and activism work as an adult. I was like, what would it be like for me? Like: Woman Who Got Stung By An Entire Beehive Gets A Job.

I’m wondering like if you have thoughts about the representation of your disability and publicity of you or your work.

Hannah: I would be honest: some of that is on me. Because I had no idea how to talk to the media. Within like six months of starting that Instagram account I just had no concept of like, hey, you shouldn’t say everything to a journalist because they will use everything you say. Probably against you.

So I just didn’t know and I just didn’t understand about the headlines and about the articles like that.

I am much more aware now and also like make people send me the headline ahead of time and send me the article ahead of time so I can say: no, this is not what we’re doing.

That was just like a live and learn moment. Like, holy crap the media is crazy.

I went viral from a FaceTime in the UK, I wasn’t even viral here in the US. And I guess in the UK they have a lot more like, Daily Mail and just like kind of trashier sites. Story after story after story. Tabloid press basically. So that was the first time I went viral. And then it was just like, I had no idea what I was getting into. Definitely had learned along the way how to say things much more diplomatically. But yeah, the media’s crazy. Period. Case closed, right.

Chayah: Yeah. I mean you’re so right. I think part of it was like, you know, when I read your book and I saw all of the extraordinary work you’re doing, right. And your your tagline in your book, which says: “my disability is the least interesting thing about me.”

It’s so interesting still how like just all this media representation focuses so much on your disability, you

Anyway, I wanna ask about your accessible park, accessible playground project. You and your husband Brandon have been working on trying to create an accessible playground in your town. Can you share any more about what or who inspired that? Who was the inspiration — to use that dirty word again — and what are you hoping to bring to your community with that playground?

Hannah: Yes. One thing about me is if I have an idea, I have to make it happen. Sometimes to my detriment. I was like talking with my husband Brandon last night and my husband was like, you know, the difference between you and other people is you dream big dreams, but you are willing to put the work in to make them happen. And not everyone’s like that.

And like, yeah, but it’s also exhausting.

But Brandon and I live in a small town, and at the time that we had this idea in 2020, 2021, there was no like, local coffee shop here. There’s just like McDonald’s and Dunkin’ Donuts and you know, coffee shops are places of community. You can go and work and meet people and hang out. And so we were like, oh wait,

Not that we know anything about starting a coffee shop but we had the idea and who knows.

And some of my friends were like, oh it would be so nice if you had a accessible playground that the kids can play at when the moms and dads are hanging out having a coffee, and we said oh my gosh, like yeah! that’s Why didn’t we think about that?

And then honestly, things like went crazy from there cause we’re like, our town also doesn’t have a laundromat. We should also start a laundromat! Again not that we know anything about having a laundromat. And then somewhere along the way a consignment shop got added on — we like essentially had this like vision of, I don’t know, like a strip mall I guess. I don’t know why. A whole town center. Really we’re like

So we were talking to other people, looking at buildings, blah, blah, blah — just like insane.

And they’re like, “…one day.”

But Brandon was like, “Well what if we just focused on the playground?”

And I said, oh yeah, that sounds like a good idea. So we were like, okay let’s build an accessible playground here in our town. Because the closest one to us is about an hour away. And on the other side of the city There’s a few others in Virginia, but not anywhere close to us really. So we filed the paperwork to become a nonprofit and the nonprofit is called Growing Inclusivity.

We looked honestly for a year for a piece of property that we could do this on and we’d put offers in on property and got denied a lot of times. And then finally like had a funny happenstance meeting with the owner of a golf place and he was like, I have land, like put it here. And we were like, are we allowed? What are you saying? Like after a whole year where we were posting, looking at properties, getting denied, fundraising the money, and he was just like yeah lets do it.

So we signed contracts and partnered with a local golf place, Independence Golf here in Powhatan [Virginia]. He was like, here you go, do whatever want. He just like totally helped the vision, and he cares about the community.

I was like: this is amazing. I’m in.

So yes I still have no idea how it’s going to happen, because it’s like a $2 million project, and we have like a

Chayah: Well I was gonna ask you yeah. How do people donate? I’m assuming you’re still fundraising, so how could people donate?

Hannah: It’s just growinginclusivity.com and there’s a big thing that says donate.  I have no idea if it will happen, when it will happen. But my husband Brandon is like someone that’s more like reasonable and rational than I am. Like, I had an idea and I’m like okay like two hours later I’ll be like, why hasn’t this happened yet? Where is it?

And Brandon will be like, hey there, this isn’t literally like a five to 10 minute project. And then it hasn’t happened in like five minutes. He calms me down because I  will work myself up. So now I’m like, it’ll

Chayah: That is awesome. That’s sounds like a really wonderful project. It’s so cool that you found a landowner and business owner that was excited about kind of bringing you on board too that’s so cool.

Well, we have been talking for quite a while and I wanna let you get on with your day. I know you have a CrossFit competition to get to. I have one more question for you that is really near and dear to the work that I do every day working with the, you know, teens and families of children. Usually, like I said, really young children with disabilities. Do you have any — I almost don’t like this question because I don’t assume

Hannah: I think it’s hard cause I don’t have a family with a disability. I have four kids who are all over the place with ADHD, but they don’t have like medical conditions, which is that’s all I had known obviously is medical conditions and surgeries and things like that.

And that was not to minimize anyone with ADHD. Like they are wild and it’s insanity round here all the time.

But I think people that have kids these days are going with all kinds of conditions are so honestly lucky

I was born in 1990 and my parents didn’t have the internet, they couldn’t like google medical terms, they couldn’t google like, what happens after this surgery? It was really just my doctors and my parents hoping things went well, with their expertise and with what they had, you know.

But they were all making the best decisions that they could at the time and I’m really grateful because I’m still here.

And the other thing if my parents had had a community of people that like all over the world that they could learn from and share wisdom with and teach things to, like I just think that’s a game changer.

So I know sometimes you can get too in the weeds on the internet. You have to be the person that has boundaries, and that’s on you. So yeah I just think there’s so many ways to learn things and to be connected.

My son had a baby recently that had a very rare medical condition and she was able to get connected like with people within our own city. It’s like before the internet and before like technology she could have lived in the same city and not ever known that there were people in 20 miles away that she could talk to and relate to. And so I think that’s really special and really important because just like I talked about finding the disability community for myself, it was kind of just as important for my parents to find that as well.

And on the flip side of that,  if you’re a parent of a disabled kid, find them places to be with other disabled

Like I don’t want my kids to —  since I’m disabled — to not understand that a disabled person can use it besides me. So I just want people in general to have community and have like a sense of belonging in all circumstances, and not just like in their special needs classroom at school, and then they don’t have

Chayah: Thank you. Once again I’ll just say that was really well put. Hannah, I just wanna thank you so very, very much for taking the time to meet with me. Taking the time to create the presence that you have online for, you know, for all of the people out there who benefit from your humor and your insight and your presence.

Again, I’m just gonna hold your book up for everyone out there: “I’ll Pray For You and Other Outrageous Things Said to Disabled people”. We didn’t even talk about your amazing animals. That’s like a whole other, it’s like a whole other conversation that you represented in your book. I also grew up with a pig, a not mini pig. So we could talk about that.  I hope you have a really wonderful afternoon

Thank you this has been so fun.

Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/WLKszz0dsao

“Neurodiversity and access is the next frontier of our DEI conversations.” –Mel Houser

In this episode of the podcast, we welcome medical student Elizabeth “Biz” Barker, and Dr. Melissa Houser, who is also the executive director of the non-profit All Brains Belong VT. Dr. Houser also sits on the CDCI Community Advisory Council.

Both physicians identify as having a disability, and Dr. Houser also has a family member with a disability. They’re here to talk about ableism in the medical system, and how it begins in medical school: how we expect learners to perform as they learn medicine has a huge impact on keeping ableism going in healthcare.

Biz: Would you like to start?

Mel: Sure! I can do that. So I am Mel Hauser. I use she/they pronouns. I am an autistic family physician with a clinical focus on providing primary care to neurodivergent patients across the lifespan. I’m the executive director of All Brains Belong Vermont, which is a nonprofit organization in Montpelier that uses universal design principles to provide healthcare, neurodiversity related education and social connection opportunities for kids and adults. And I guess I’ll also mention that I am autistic, ADHD, dyspraxic, dyslexic, dyscalculic.

And I did not learn any of these things about myself until I was 37 years old.

So it’s been a journey of like rewriting the narrative of my life through that lens. And, and learn learning about, you know, the things, the things that make me, me the things that allow me to do my work in, you know, meaningful ways and the things that are like really, really hard.

Biz: Yes. Thank you so much, Mel. I appreciate it. Did you want to give a self-description?

Mel: Oh yeah. Thank you for supporting my working memory. I’m a white person with short brown hair and I’m wearing a light aqua shirt. And I have a gray pillow behind me, and I’m at the corner of a wall that is copper and aqua.

Biz: Amazing. Thank you. So well, I’m Elizabeth Barker. I’m a fourth year medical student at the University of Vermont. I am dyslexic, which I was formally diagnosed with when I was in eighth grade, but had always known I was a bit different. Now I considered myself a “neurolurker”, discovering all the other ways that my brain does not fit the typical mold, but is still beautiful in its own ways. Other than that, I’m hoping to go into family medicine primary care. I’m applying into residency all over the nation, so still very much so in the process of becoming a doctor, but hopeful for my future. And I am a white female who uses, she/her pronouns. Forgot to mention that brownish, blondish hair, and a very orange room wearing a white shirt. All right. Do we wanna jump into our first question?

Mel: Yeah. So, you know, we were thinking about the medical education process and and, and, and how, you know, our experience even, you know, separated by, you know, over a decade really the, the, there are some things that are missing.

Biz: Mm-Hmm. . Yeah. So a bit of context. Mia, Mel first met when she was my advisor during my first year of medical school during a class called Professionalism, what was the C?

Mel: Communication.

Biz: Communication and Reflection, which was a really phenomenal medical school class that during our first year, second year, and part of our third year brought small groups of medical students together and kind of took time to reflect on the many other various aspects of the world in general that affect medicine.

We looked at a lot of social determinants of health; lots of other popular news articles that kind of were intertwined with medicine and healthcare in general. And this was one of the places that me and Mel first had a presentation on divergent aspects of healthcare, which was really fascinating but definitely was one of the few parts of my medical school education that really touched on it.

So as me and Mel went through our years of healthcare, Mel was brave enough to jump out and really start taking this on. And I was really lucky to be able to follow her and also learn healthcare from the kind of general typical model, but also other ways that it could be viewed. Other ways that it can be improved upon to support all people.

Mel: Oh, that’s so beautifully said. I’ll also mention that I did my medical school training at UVM also and I really do think that I got excellent training in health equity, cultural competency, like, just like, like, like that lens that in a way that perhaps was, was a bit ahead of its time.

Having that diversity, equity, and inclusion lens you know, has been a, a value of UVM for a really long time. And, and, and I would also say that neurodiversity and access are the next frontier of the DEI [diversity, equity, and inclusion] conversations. I think that that’s where I’d like to see, see things going because I think that there are you know, everyday life practices for, for, for, for patients experiences and for physicians experiences that, that relate to neurodiversity and access that are unrecognized.

Biz: Absolutely. For sure. All right. What was our first question that we wanted to jump into?

Mel: Yeah, so, so you know, the, the, when we think about like, gaps in medical education you know it’s, it’s tempting to say to say that, but like, where do we start?

Biz: Yeah, for sure. Well, I think we should start with maybe recognizing all the really amazing parts that medical education does reach upon what you were saying. UVM does seem a bit, a bit before its time and does reach past the basic model of medicine to include a lot of other aspects of healthcare.

But where it’s lacking is also very evident.

I think that for me, one of the biggest things that really jumped out to me when being in the typical medical school education system was a lot of this mix of imposter syndrome and the realities of not knowing what we don’t know. There was a lot of emphasis on evidence-based medicine in our first couple years and throughout medicine, and I find this extremely important.

But it also happened to teach us to, in medicine, kind of approach a lot of things with skepticism if there isn’t previously done data and science and evidence to back up practices so on, on top of imposter syndrome. And this idea of only being able to do what we have evidence-based medicine for can kind of sometimes paint medical providers into corners, is what I’ve seen.

Mel: Yeah. And like, just to say say, say a little bit for, for folks who don’t or maybe are not familiar with that imposter syndrome term. So, you know, just like the, the, the phenomenon of somebody doubting their skills, talents, accomplishments or like a, like a, like a internalized feel, feel feeling of like you know, the fear of being exposed as like incompetent. Like, oh, they’re gonna find out that, like, I don’t really know what I’m doing. So I mean, this is certainly not unique to, to my experience. To your experience. And this is pretty common as you know, described to me by colleagues in all, in all kinds of professions.

But, but very common in healthcare training is like the vibe of, you know you know, explicitly or, or implicitly being told, you know, “Fake it till you make it!” Like that I think drives imposter syndrome. It’s mm-hmm. not healthy.

It’s actually OK to not know something and to authentically show up and say, “I need help. I don’t understand this. I actually have no idea.” Like, that’s like normal. It’s like so profoundly normal.

Biz: Absolutely. And a lot of the culture of medicine, is the imposter syndrome is almost taught to be embraced in a way to kind of, like you said, fake it till you make it. But I think that, like you said, it’s, it’s not healthy. It leads to people trying to compensate in ways that don’t benefit them and long term aren’t sustainable.

And I think it also leads to a lot of people not being able to accept other aspects of other patients.

So in medicine, on top of the imposter syndrome, I feel like we’re taught to be superhuman and to ignore all the things that we can’t do perfectly or ignore our health and try to be something greater than we are. Which I think that also leads to doctors not seeing patients in the full ways that they can.

Mel: That’s a really good point. You know, I think that there’s so much of the hidden curriculum in medical education. So there’s, you know, from, from the physician lens of like, you know my, my duty, my calling is this, and, and, and there’s a part of that, but that it’s, it’s not a zero sum game.

So, you know you, you, you, you, you are a human and you have needs, you have, you have access needs, the thing, you know, access needs being, you know, anything anybody needs to fully and meaningfully show up in life.

And, and, you know, the, the, the culture of, you know, don’t, you know, never take a sick day and, you know you know, put the patient first and like, is that maybe an overgeneralized cultural concept?

Like does put the patient first? Like, like, can you do that without ignoring your own access needs?

Biz: Absolutely. Exactly. And then with that, you just start to not even consider it that there are access needs when we’re told to be one way and perfect and human, non-human, just all the time, then we don’t accept the ways that we are human and the way that lots of people are human, and we do have different access needs. And if doctors can show up as their authentic selves that need accommodations and that need different access needs, then our patients can show up themselves as well.

Mel: Yeah. You know, I think that’s a really good point. When I think about some of the common practices in medical education, not just in mine, in yours, but you know, my mentors and my colleagues who train in all different kind of systems, it’s, it’s just, I think pretty common. Like, for example, the concept of pimping where you are put on the spot in front of asked direct questions I mean, my experience was that that was really stressful and uncomfortable and painful and interfered with my learning in those circumstances. Mm-Hmm. both like, you know, both as the direct recipient of this practice or of like watching my colleagues being humiliated and dissipating my future humiliation. Like all of that was just, you know, unnecessary for my learning experience. But I do remember the, you know, what I’ll call like a brain rule, you know, the assumptions, the cultural assumptions that you get kind of indoctrinated and brainwashed into as opposed to like, you know, true laws of physics like, or true world rule, like the brain rule of like, well, you know that’s, that helps brains learn. You know, brains learn under stress, brains under, under fire. Yeah. I mean, maybe, maybe some brains do. Mine doesn’t.

Biz: Exactly.

Mel: And, and in fact, we all have different grains and like some brains may benefit from that concept. Some brains do not. And if we really want to be providing environments that are inclusive of all brains, we may not wanna have default practices.

Biz: Absolutely. When there’s only one way of doing something, it leads to othering,

Mel: Which Right. Because if, if, if, if, if you are, you know, oh brains learn under fire and humiliation and my brain doesn’t, there must be something wrong with me. Air go fast tracked imposter syndrome.

Biz: Exactly. And in the same way that we don’t believe there should be one way to access healthcare, because everybody has a different brain and needs a different way to access healthcare, I think we both agree that medical school needs multiple different ways to demonstrate the same medical knowledge and skillset that everybody possesses in just different ways.

Mel: Absolutely. and so when there is, for example you know you, you, you must demonstrate your knowledge via an like an, an oral boards if you have the kind of brain that organizes information best visually but you, you didn’t have a choice. If you , I remember as a medical student on rounds, again, these like, you know, high pressure verbal pre anyway you know, you shouldn’t need your notes on rounds because if you need your notes, that means you don’t know your patience. Mm-Hmm. , and I’m like, oh my God. Maybe may, maybe I’m not really cut out for this because turns out I have working memory differences mm-hmm. where the visual support actually gets mima. That’s like what the point of a to-do list is, or keeping a calendar. It’s the same neurologic process, but it is like overly glorified to quote, not need the accommodation which is, you know an example of ableism

Biz: Mm-Hmm. . Exactly.

Mel: Name the thing.

Biz: Name the thing. Exactly. And the same kind of brain rule applies to the way that we think about ourselves, then turns into how we think about our patients. So if our brain rule is that we don’t, we don’t need a visual aid to get through our presentation, then we might have the brain rule that patients don’t need a visual aid to get through their patient visit. So if we can accept that we all have our own access needs and we all need our own supports, then it’s easier to accept that patients have their own access needs and need access to their own supports. And just creating that brain rule that accepts that we all have different needs.

Mel: Right. Cause that’s a world rule. It’s actually a thing that we all have different brains that have different needs.

Biz: Exactly. So by having negative brain rules in medical school and having negative brain rules about the way that we need to show up changes the way that we think our patients need to show up.

Mel: Right. And I, I, you know, I i I, I do think that there was an acknowledgement of the hidden curriculum in medical education. Like, I remember even that being talked about as a trainee, and it is true. It’s just that there’s, there’s even more threads of the hidden curriculum that are unhelpful. You know, so for, for example you know, I, I, I, I remember you know as a, as a trainee, you know, my, my clinical supervisors make might make some comment like, oh the patient with the list as though there were something stigmatizing something negative about being, like, having the kind of brain that organizes your information in writing and brings with you a visual support or up that patient has a positive cell phone sign and implying that like, you know, they must not actually be in the amount of pain that they say they are because there is one correct way to look when you’re in pain, which is of course not a thing. Mm-Hmm. . But there’s like so much of that, those like just the, the attitudes, the attitudes of being judged and dismissed. And so like, you know, not only is this not helpful, but but it hurts patients.

Biz: Yeah. Cuz patients can tell when they’re being dismissed and that doesn’t just lead to a negative patient interaction in that moment, but a further distress between patients and the medical system as a whole.

Mel: Totally. I’m really glad you brought that up. You know, there is extensive literature that neurodivergent patients experience barriers to accessing healthcare. And, and, and, and in addition to environmental barriers, sensory processing, you know the, the, the defaults of, you know, that, you know, you gotta pick up a phone to make a p you know, make an appointment. You gotta fill out the 20 page packet to become a new patient. Like, besides that stuff, it, there’s actually literature that patients perceive that healthcare providers have unhelpful attitudes. They, that like patients feel it, you know, feel it when, when they’re being viewed through a, a, a, a, a deficit-based lens.

Biz: Absolutely. And a lot of healthcare does that views a lot of healthcare through a deficit-based lens versus a social model based lens. Which

Mel: Yeah. Can you say more about like the medical model of disability versus the social model of disability?

Biz: Absolutely. So the medical model of disability kind of puts the deficit in the person as in the person is deficient. The social, social based model looks at the person with the disability as whole in themselves and not their environment is deficient to meet their needs. And I think that in medical school, we’re taught constantly about abnormalities from the baseline that is the study of medicine, but we seem to pathologize anything that’s not the typical, the norm, the, the middle of the bell curve. So when we approach things that the social-based model it doesn’t lead to the additional inter internal conflict, the internal shame that is put on people with a quote unquote disability, it puts the shame and the othering onto the person versus the need for accommodations and the need for our society to change to accept them as they are.

Mel: That is so well said. You know, I think that when it comes to visible disabilities the concept of the social model is is, is is is quite clear. You know, if I am a wheelchair user and I approach a building that has a ramp, I am going to have less disability than if I approach a building that does not have a ramp. And when it comes to invisible disability though, like, I mean, I’m not a, I’m, I’m, I’m, I’m, I’m, I’m gonna acknowledge there are things about my disability that, that make things hard, make things really hard, and the amount of disability I’m gonna experience is going to be relative to how accessible my environment is.

Biz: Absolutely. The same way that for me as a medical student, when we have to write out our notes, my typing in my writing is a bit slower because of my dyslexia, and it’s harder for me to process my thoughts and get them down onto paper when I’m typing in, in a kind of loud workroom. But being able to use dictation or text to speech softwares allow me to talk my notes out which allows me to do them much more efficiently. So in a way, it’s, it’s allowing me to do the same thing, but util needing less of my energy to change how I function so that I can get the same task done.

Mel: Right. And so, you know, all brains have a finite capacity of, of, of, of bandwidth. And if you’re gonna spend all your bandwidth doing the thing in a way that doesn’t work for your brain, you’re not gonna have a whole lot of left in your bandwidth budget. And I think that, you know, universal design offering flexible, multimodal ways of engagement benefits everybody. So there are people you know, in your example of using speech to text assistive tech and other assistive technology, I, I, I think there are, there are people even who, you know, are, have typically developing brains who benefit from that shared just having like multiple choices. It’s not like this is the default and okay, you’ve disclosed the disability now, now you get the accommodation that you, you know, often unfortunately have to work, send like a whole bunch of your bandwidth budget to even active.

Biz: Yeah, exactly. So for example, yeah, using the dragon in the hospital is much easier for me than using another form of accommodation like text to speech because it’s already set up for most everyone. So instead of it having to be set up individually, just for me, it being there for everyone is like the wheelchair ramp just being there for everyone.

Mel: Right. And if you have the kind of brain for whom, like using Dragon is hard, like what happens, you can type, like there’s multiple choices. And when you think through like the stages of the workflow of like, you know, anytime there’s like the one choice and there’s, you know, like that, that’s not neuro inclusive

Biz: Mm-Hmm. . Exactly.

Mel: So, you know, biz, we’ve, you know, we, we’ve, we’ve both seen patients who are dissatisfied with their healthcare experiences. And, and you know, as we connect that to some of some of the elements of the hidden curriculum that’s part of healthcare system culture you know, do you think there, there’s there’s anything about the medical education process that may be contributing to that?

Biz: Definitely, yeah. That a, that brings me back to kind of what we were talking about earlier with imposter syndrome. The idea that you are superhuman and you know everything, even if you don’t feel like you know everything, the kind of the fake it till you make it idea that you’re never wrong idea. I think that this sets a lot of people up throughout medicine to kind of think they know everything, even though we are all constantly learning or getting really attached the idea of something they heard once. And then not knowing more and kind of sticking to that one thing they, they were taught previously, like a brain rule, a brain rule that they were taught and then was never challenged by anything else in education. I think this can lead to a lot of patients presenting with symptoms that don’t fit a typical illness script that we’re taught.

Mel: Right. Because as trainees we’re told that a lot of times, either, you know, explicitly or implicitly fake it till you make it, is implying that you’re not allowed to say you don’t know mm-hmm. , and, you know, like in, in, in, in, in full transparency, you know, my my experience is that when you tell a patient, I don’t know, let’s learn this together, they love it, you know, they, they appreciate it. Like be a real person. In, in, you know, as, as, as someone who, you know, I run, I, I I I, I run a healthcare organization that, you know, has a, you know, a different, like a totally different model. You know, it’s, it’s, it’s the, the people who come here are generally those whose needs were not met by the traditional healthcare system and what they like. So, so basically most times I see new patients, I am hearing stories of their experience of, you know, feeling like they weren’t listened to or they were, they were dismissed or, or, and, and, and, and the stories they tell, you know, like I can zoom out and say, you know, probably the, the, the, the healthcare provider didn’t maybe really say that in way, but doesn’t even matter because their experience, like the, what they took away, how they remember feeling in those encounters, that’s what matters.

Biz: Absolutely. Absolutely.

Mel: So as we wrap up biz, like, do you, what do you, what do you think should be our, our take home points?

Biz: Yeah, definitely. I think that a big thing medical school is so much information, always, and all the time and always changing that maybe it’s not so much how and what we teach or not necessarily what we teach and what we learn about directly versus how we’re taught to approach problems and how we’re taught to approach the unknown. Especially things that we haven’t been taught or things that maybe necessarily go against what we were taught how to approach those questions in patients with openness and compassion and curiosity.

Mel: I love that. So, you know, fake it till you make it is not good for health, physician health or patient health. Maybe we could summarize that.

Biz: Absolutely.

Mel: So say one, you know, acknowledge when you don’t know something. Exactly. and, and, and in order to learn about that thing, it may involve looking at other fields to help answer those questions.

Biz: Mm-Hmm. . Yeah. Absolutely. Is there any other main

Mel: Take? Yeah, I’d say like, my, my, my, my main second point is just like neurodiversity and access is the next frontier of the d e i conversations. And you know, not, not, not just to be able to offer neuro culturally competent healthcare to our patients, but taking a look at the access needs of our neurodivergent learners, most of whom have no idea that they are neurodivergent

Biz: Mm-hm. And that will also help with the immense burnout we’ve been seeing in medicine. So again, it’s not, we’re not here just to help our patients, but to help our medical colleagues as well.

Mel: Exactly. Because, you know, it is an epidemic of physician burnout, physician suicide, I mean, this is real. Right. So, so, and looking at the systemic issues that are incompatible with neural cultural competence.

Biz: Absolutely.

Mel: All right. Well thanks biz. It’s been nice talking with you.

Biz: Thank you. I’m so glad we got to do this.

Mel: Yay. Bye everybody.

Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/UIreD4b60bI

On this episode of the podcast, CDCI Executive Director Jesse Suter is joined by UVM University of Vermont Distinguished Professor Emeritus of Education Michael F. Giangreco.

Giangreco shares memories, observations, and advice from his more than 30 years of service at CDCI. Dr. Giangreco is a widely published and respected innovator in the field of special education, as well as being the author of the much-loved cartoon series, Absurdities and Realities in Special Education.

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