https://youtu.be/pPwhCrM7X44 In this episode of Green Mountain Disability Stories, autistic physician Mel Houser joins CDCI Academics Coordinator Winnie Looby, as they talk about community access and belonging. “I never really saw myself as…like, an advocate, in any way, really? Because people in Vermont, I think, many people, have been doing some good thinking around diversity, equity, inclusion and belonging — all these things that have unfortunately become very buzzwordy. And it’s just that diversity, neurodivergence, those topics have been missing from the community conversations on diversity, equity, and inclusion. So when I show up, and I talk about that, do I see myself as wearing the hat of a disability advocate? …I show up and name the thing about the oblique angle. It’s given me a lot of hope that that has landed in some brains that truly have never thought about this before.” A full transcript appears below. Episode 28: Mel Houser with Winnie Looby Winnie Looby: Hi, Mel! Mel Houser: Hi, Winnie. Winnie: Hi. So I guess I’ll start. My way of doing this is very casual, so– Mel: Perfect. Winnie: –Hopefully it won’t feel like I’m interviewing you too much. Mel: That’s why I agreed to do this because you were the interviewer and I would talk to you all day if I could. Winnie: Aw, so sweet. Thank you. Okay, let’s see. So, hi, I’m Winnie Looby. I’m an Academics Coordinator for CDCI, and I’m interviewing today Mel Houser. My pronouns are she/her. I live and work in Burlington. And to briefly describe myself, I have brown skin, glasses, graying brown hair, locks, and a white shirt. Mel, could you introduce yourself? Mel: Sure! So I’m Mel Houser, I use she/they pronouns. Visual description, I am a white person with short brown hair and I am wearing a red fleece. And should I tell you anything about me at this point? Is that an interesting… Winnie: Yep. Mel: Okay, I’d be happy to do that. I am a family physician. I care for toddlers through older adults, mostly neurodivergent people of all ages, often multi-generational families. And I run a nonprofit organization called All Brains Belong Vermont. We try to make life better for people with all types of brains through medical care, social connection, employment support, and helping the broader community better understand neurodiversity. The other thing I’ll mention about myself is that I myself am autistic, ADHD, dyspraxic, dyslexic, dyscalculic, and the parent of a multi-neurodivergent child. And so I wear lots of different hats and I’m happy to talk about my experiences of disability and some of the trends of the work that I do and the people I support in Vermont. Winnie: Awesome, awesome. Yeah, it’d be great if you could tell us a little bit about that, your experience with disability in Vermont overall. Mel: Yeah, I would say that in reflecting on how to best respond to that question, I also really need to name the aspects of my identity that have so much privilege. And so as a white person, as an educated person, as a person who shows up and says, “I’m a doctor,” that impacts my experience of disability personally, and I need to name that. I never really saw myself as an advocate in any way really. I saw you just make a face about that because people in Vermont, I think many people have been doing some good thinking around diversity, equity, inclusion, belonging, all these things that have unfortunately become very buzzword-y, and it’s just that disability, neurodivergence, those topics have been missing from the community conversations on diversity, equity, and inclusion. So when I show up and I talk about that, do I see myself as wearing the hat of a disability advocate? No, I’m not the most gifted, articulate disability advocate. I really am not. There are so many people in Vermont who do that really well. I show up and I name the thing about the oblique angle, and I think that it’s given me a lot of hope that that has landed on some brains that just truly have never thought about this before. However, I will also say that in 2024, we are still in the middle of a pandemic, and the aspects in which my disability most is not accommodated in the world is through the lens of most public places are not safe for me. And I have to make a lot of choices when choosing between my health and full and meaningful participation in a lot of instances. So I’ve had experiences where there’s healthcare I’m trying to access, and as an immunocompromised person, the air in those healthcare environments is not safe for me to breathe. And I have had the experience of needing to opt out. That’s what I do. That’s how I cope. When something’s not safe, I opt out of it. And so I’ve had to cancel several types of healthcare appointments. I’ve had the opportunity of being accepted to present at a conference and then even when upfront disclosing my disability and naming that I need to be able to present virtually, I’ve had that speaking opportunity revoked. These things happen and they happen all day long and they happen less frequently to me than someone who doesn’t have these multiple layers of privilege. Or my experience is such that the systemic ableism that is embedded not just in healthcare but in the public school system, my family has been impacted by discrimination in those areas in a way that people would not necessarily name. But when we think about exclusion, it’s the opposite not just of inclusion, but it’s like the opposite of equity in terms of who gets to show up. And my family, so many of my patients, they’re not able to show up at school because of the way the system really is set up to shove people into containers in a one-size-fits-all way. And it is painful. It’s painful to watch, it’s painful to experience, it’s just painful to see systems that are so broken that they are so beyond repair. So that’s my experience of disability in Vermont. Winnie: Yeah, and you covered a lot of different layers there. So community healthcare: as you know my spouse has been recovering from cancer treatment. And we were kind of a good hygienic family anyway, but it’s taken on a whole new meaning. Now to keep him healthy means yeah, we opt out of stuff. We missed a family reunion, folks we hadn’t seen in a long time. Even though it was going to be outside, it was going to really tax his system too much to do it. And it is hard, I agree that it feels like you’re kind of talking to the wall when you try to explain why things are a little difficult. I’ve heard students say, “Hey, it was okay for me to do things virtually before. It was okay to turn things in a little late before. Now we’re back to normal, whatever that is, and I can’t get those things anymore. I don’t understand.” Yeah, so it has been confusing. I try not to get mad about it, but yeah, it’s been really hard. Been really hard. Mel: So what you just named, the get mad about it, that’s something that I personally have been noticing about myself is that when I either experienced myself or my family or my patients, that exclusion, that thwarting, I react with rage. And so that’s not good for anybody’s health, but it’s automatic, it’s an automatic nervous system response to these systems level examples of exclusion. Exclusion is painful. Winnie: The idea too that something isn’t fair pops up for me, yeah. Mel: Yeah. Especially in examples where they’re contexts that shouldn’t be optional. It’s one thing like I don’t expect to be a large public concert to be safe for me to attend as an immunocompromised person, but I expect to be able to access healthcare. I expect for my child to be able to go to the orthodontist. I absolutely expect for them to be able to access public school. I absolutely expect that. And when that’s not the case, I experience rage. Winnie: I wonder too, because you named the privilege piece. Well, my kids are a lot older now, but I remember thinking, sitting in an IEP meeting, how many parents would feel too intimidated by that process to really push back about things. Or maybe they work a lot, they can’t take off in the middle of the day for a half hour meeting where five or six professionals aren’t even really listening to what they’re saying. That part I think gets to me more. I’ll figure it out, but sometimes people don’t have a lot of resources that way. Mel: I absolutely agree with that. And honestly, that’s part of my rage. So for example, in this instance as an immunocompromised person with an immunocompromised child, to know all the right things to say, to know what my rights are, to at the beginning of the journey have more capacity to fight the fight, but then because of my own chronic illness, to really not have, even with the knowledge and the access to resources in terms of even people resources, people to ask for help and knowing the right people to ask these questions of, even that, the fact that I still could be coerced out of a public school system, what does that mean for the broader community? Just the power dynamics that are so unsafe for children and families with disabilities to be able to get what they need in school is just … I have a lot of emotions around that and it’s when I see my patients, I would say that almost all of my neurodivergent kid and teen patients, almost all of them are not having their needs met in school. And when the health consequences of being thwarted all day long, to be receiving the explicit or implicit message that there’s something wrong with you, something that needs to be changed about you in order to fit into the container, that’s bad for health. Winnie: Yeah, yeah. It kind of wears you down. Mel: It does wear you down until you tell yourself that it’s your fault. And it stays with people. Winnie: Right, so do you mean like once people give into maybe just giv
