Green Mountain Disability Stories

Green Mountain Disability Stories
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Stories about living with disabilities in Vermont — the Green Mountain State. As told by, with, and for Vermonters with disabilities.

  1. 03/25/2025

    Episode 33: Karen J. Lloyd & Heidi Swevens

    In this episode of the show, we welcome artist and photographer Karen J. Lloyd. She talks with Inclusive Arts Vermont’s Heidi Swevens about coming to terms with incorporating disability into her identity, how Lyme Disease changed her life, and a painting by Lloyd that is part of Inclusive Arts Vermont’s CYCLES exhibit: an image of a red-and-gold phoenix on a tranquil blue background. Karen graduated from the University of Vermont in 2004, with departmental honors. The CYCLES exhibit has been on tour around Vermont for the past year, and is currently in residence at CDCI’s offices in Mann Hall on the University of Vermont campus, in Burlington, Vermont. https://youtu.be/5GsJ-bai5jc A full transcript appears below. Heidi Swevens: Hello, and my name is Heidi Swevens. I have been asked to do a guest host for the Green Mountain Disability Stories Podcast and I’m thrilled to be here with artist Karen Lloyd. So, for access, my name is Heidi Swevens, I use she/they pronouns. I’m the director of Community Partnerships and Exhibitions with Inclusive Arts Vermont, and I’m also a disabled artist and really thrilled to be here. I am a 50 something white human with blue eyes and pale skin and short brown hair. Today I’m wearing a turquoise turtleneck sweater and there’s a soft focus behind me and I’m really excited to be in conversation with Karen Lloyd. So, Karen, please introduce yourself. Karen Lloyd: Hi, I’m Karen Lloyd and I also, I use she/her pronouns and I am a 42-year-old fair skinned woman with very long strawberry blonde hair and green eyes. I’m wearing glasses and a turquoise heart necklace and a teal sweater. I am sitting in my living room today in Winooski. Heidi: Wonderful. And so the Green Mountain Disability Stories Podcast is about stories of people with disabilities in Vermont, and today we’re going to be talking with you about, we’ll start with a piece that’s in the CYCLES exhibition, phoenix, and then we’ll just see where the conversation takes us. So, Karen, if you don’t mind, just tell the audience a little bit about your piece that’s in CYCLES, “Phoenix”. Karen: Thanks, Heidi. So, my piece, “Phoenix Rising” is an acrylic on canvas and the original is actually is an eight by 10. It was the first piece I’d done in a while and it was a little over a month before my 40th birthday, so sort of the precipice of sort of that change of a new decade. And so a lot of self-reflection happening and I hadn’t done actually more full-sized painting in a while, but that one just hit me so hard and it really wanted to come out once that idea was planted. And so I worked on it for all the weeks basically leading up to my 40th birthday and finished it just before my birthday, which meant a lot to me to sort of have that timing. It really felt like the phoenix is this mythological creature that sort of represents rebirth and transitions and overcoming and persevering and being a disabled artist now for over a decade, it has felt like a symbol to me to look to even for my own inspiration. So, I think sometimes people think as an artist we’re putting out to the world, but it’s also been my own inspiration back to me and it felt like a symbol of everything I’ve overcome, having Lyme Disease actually starting when I was a UVM student and the challenges that happened even just to get to graduation in a good way. And even then persevering and graduating with honors, but that being very difficult and taking a lot more effort. And then going through the past 20 years really of struggling with all the effects of Lyme Disease and what came through that as fibromyalgia and the migraines and the brain fog and the fatigue. And so hitting that 40 and looking both back and forward of what is the rest of my life going to look like? And at the same time I was just about to contemplate the big decision of divorce. So, it was also a really big life stage change in my life as I was starting “Phoenix” and now I can look back two years later and I am officially divorced. And so having that painting of mine to even look through during the past couple years now, it has really sort of helped when it’s been difficult. And remembering the phoenix actually it rises from its own ashes, so there is that fire and it might be pretty intense at times and seem really dark and not so fun, but in the end the phoenix does come back and it rises and it’s beautiful and it’s strong and it really is something that I’ve held onto. This is sort of where it all began. You can see I have — it’s actually just like a TV tray table — by my glass sliding door with a view of my garden and beyond. Because my garden is a big inspiration to me. It’s my happy place when it’s not snowing in Vermont. And so from like roughly May to October, that tends to be a place I hang out a lot. I also have a few reference photos on my table of real peacocks and I did that so that I could see just the way they move, the way their feathers go and get an idea of how does a real bird have motion. And I wanted that to sort of be loosely reflected in my phoenix. It was kind of wild: the way I like, drew the phoenix is I didn’t even really draw. Heidi: Nice. Karen:  And this is just another more close-up of, so you can see the various shades of blues and teals, a little bit of the purple of the background and lots of movement and then just the most basic outline of the phoenix, and it was kind of wild. The way I drew the phoenix is I didn’t even really draw it. I painted the outline solid. And so that was even an interesting process because I didn’t draw just a thin outline and then go from there. I sort of painted its body, if you will, solid, if that makes sense. And then built up from there. Heidi: I was just going to say, as you’re describing this, I’m hearing you just also articulate and say how different this process was for you, which is maybe some version of a newness in the process for creating it, which may or may not be relevant. So, I didn’t mean to interrupt you even though I did, but I wanted to [inaudible 00:06:40]- Karen: That’s okay. Heidi: … it escapes me. Yeah. Karen: I never even really thought about it before, but that’s such a good point of, there’s actually quite a lot about the phoenix that was me trying new things and it just working out that way. It wasn’t like I necessarily even set out initially to, okay, let’s see how many different things we can do. But I guess looking back now, that’s true, there was a lot to this process even starting with the Sharpie drawing, which is not how I normally begin a piece of work. And I think I learned a lot from this piece. And even the drive to make it was interesting where because I had so much going on in my personal life contemplating divorce that we were really serious. I wasn’t really feeling a lot of art mojo in general. And yet with this piece, it just so badly wanted to be born, it wasn’t going to take no for an answer, it has to come out of me, which as an artist feels really amazing because we don’t always have that drive to such a level and I certainly don’t. And there’s times where we have to just push through with something, but it was the opposite where I could hardly wait to get to work on it again, even if it was at 2:00 in the morning. And so it was a lot of hours, but really happened through about a month really of time, which for me is actually pretty fast because I’m a slow maker when it comes to original art like paintings. Heidi: Yeah, I feel like we’re getting this really intimate view of your process, so thank you for that. Karen: I know we’ve talked about this in the past, Heidi, when we’ve done the networkings with Inclusive Arts is that it ended up through the process and by the end of it feeling like a self-portrait. And that was sort of amazing too because obviously I know I’m not a phoenix, I’m not a bird, and yet it ended up becoming sort of a symbol of myself is what it felt like. And so each little line really was a labor of love. And so even though it was very meticulous, it wasn’t in a bad way, if that makes sense, as much work as it was to do it, I was glad to. Heidi: For this piece, I am curious if the art, the creative process, disability stuff, is there any parallel, and maybe you could describe, you talked about the blues and adding to the background to take away from some of the body of the phoenix. Are there more visual details that you might add in now for the listeners as well? Karen: Yeah, so I think it does sort of even correlate with being a disabled artist of having to think of new ways of doing things, can’t always rely on maybe what worked in the past. So, for myself, when I look back, I always feel like I had two lives in a way. So, pre-Lyme and after Lyme. I first got Lyme disease when I was 19, and so I was actually in the middle of being a college student at UVM when that happened. And it was the summer of 2002 and I was working at a horse stable because back then I was really strong and healthy and had a lot of energy. And even though I was a smaller person, I was very strong. And so mucking stalls wasn’t an issue and I loved being able to be outside. I loved being able to take out the horses and having time with them and then all of a sudden everything changed and getting to the barn one day and I could barely even pick up a pitchfork that was empty. Just the pitchfork itself was so heavy to me all of a sudden. And that was the end of an era for me. I never regained how I used to be and only got worse for quite a long time. And so there’s been a lot of having to relearn how to be in the world and changing even my identity, if you will, how I view myself inside and having different limitations. And there’s also, you could say on the flip side, there’s other blessings too of having more empathy that unle

    57 min

  2. 02/10/2025

    Episode 32: Cosmo Duncan & Scarlett Duncan, with Catherine Armani-Munn

    Cosmo Duncan is about to graduate from high school, in Burlington, Vermont, and embark on his life as an adult. Cosmo, who has Down Syndrome, sits down to talk with his mom, Scarlett Duncan, and occupational therapist Catherine Armani-Munn. They talk about what life has been like for the family in Vermont, Cosmo’s new business, and some important differences between life in rural and urban Vermont. “I think that it’s really important to see the difference between the two Vermonts: the rural and the urban Vermont. And we are still good here in Burlington, but people who live in the boondocks? There’s nothing there. And if the person does not have a driver’s license, which a lot of people with developmental disabilities won’t be able to have, then they’re stuck.” –Scarlett Duncan https://youtu.be/GnqQGBGi13I?si=FTIeoSbHtREEniEK A full transcript of the episode is available below. Catherine: Welcome to Green Mountain Disability Stories. I’m so happy you’re here today! And I’m going to introduce myself: so I’m Catherine Armani-Munn and I am an Occupational Therapist or OT, state consultant with the I-Team. And here today, we have… Cosmo, do you want to introduce yourself? Cosmo: Cosmo Duncan. My name is Cosmo Duncan. I am 19 years old and I live with Down Syndrome. I have graduated with my friends, 2023, with my… But I spent longer time at the high school. I am a super senior. I will be alone– Scarlett: Done. Cosmo: … I mean done with school this June. Catherine: Thank you, Cosmo. And we also have? Scarlett: Scarlett Duncan. I’m the mom, his guardian and his fierce advocate, if I may say so. I’m excited that we are here. I’m always excited if we can get stories out that encourage other parents or other therapists or teachers, whoever, and how this can run and how beautiful the stories can be if it works. Catherine: Exactly. So today I’ve asked you, Cosmo and Scarlett, to share your story, but really focusing, like you said, Cosmo, you just graduated and you’re really entering that next phase of life of becoming an adult and living on your own. So I’d love to talk about today what your leisure activities or what brings you joy, because you’re going to be away from your school community soon. So really what you plan on doing once you leave school and you’re out in the community and how you’re going to find joy every day. So that’s what I would love to hear your story. Scarlett: Do you want to tell her that or do you want me to start you off? Cosmo: Yeah. Start me off. Scarlett: So maybe I give a little start-up, so he knows where to take off. Catherine: Yeah, exactly. Maybe a little back. Scarlett: So Cosmo is a super senior. That means he stays in the school’s district even though he doesn’t really have school anymore. He’s supposed to get transition services and other services. Due to workforce problems and funding problems, that has been really sketchy. Up to now, they have not been able to find a job placement or even an internship that would make sense, because the funding for the program he was in stopped in the middle of the school year. But exciting news, as we don’t seem to find the right placement, Cosmo is planning on his what? Cosmo: I am having my own business. Catherine: Oh, I can’t wait to hear more about that. Scarlett: So right now, that’s his biggest thing. It’s all worth it. He’s totally for it. Catherine: I believe that. So what have you found to be the best thing about the systems of support or the education that you’ve worked with here in Vermont, Scarlett or Cosmo? Scarlett: So the best thing here in Vermont is that everybody ever in our, well except one or two exceptions, I shouldn’t say everybody, but nearly everybody has always tried everything they could, and that was in their power to make things work. And as we are the pandemic generation up and running and also the PCV generation, which means we didn’t really have a high school, that took a lot of our educators to make it work. We always found everybody tried to make him feel belonging, which is more important than anything else. So that part of Vermont and the education is something that I value highly. From the educational system, I have to say we went through both rural and urban education system. The rural education system in Vermont is non-existent for people with a disability. There is nothing. There’s nothing. If there is, they can’t get there. And so, that is really something that has to change. We had to move, we had a beautiful house and we felt very happy where we were. But for Cosmo’s sake, there was nothing that we could offer him, whether it was school or in his leisure time. So to have him have his best life, we needed to move. And that’s fine, we are happy here now, but I think it’s very devastating that families have to come to the conclusion and we are not the only ones that had to do so. Catherine: Yeah. And kind of on the flip side of that question, what are some areas that these systems could improve, right? Scarlett: Yes. So I mean what could improve is you have to train the teachers to be inclusive. If we would have an inclusive school system, the other things would not matter so much. So when you went to school, Cosmo, who was the most inclusive teacher? Cosmo: Daniel Garvin. Scarlett: Daniel Garvin, our German teacher, right? Not because he was German, but because he never even thought there could be a difference in the students in his classrooms, whether they were other ethnicity or had a disability. It didn’t make any differences and it worked great. So it was just proof that if you intend to include everyone, it works, because everyone will help you do so. Catherine: Yeah. Scarlett: So that is really something that is amazing that there are some individual teachers who really make it work. And there was a program, right Cosmo, what was the best school time ever? Was it BCL? Cosmo: Yeah, BCL. Catherine: Could you Cosmo — because there might be some listeners that are not sure what that is — could you tell us what BCL is? Scarlett: What does it mean? Cosmo: Oh, I can tell. What it stands for is Burlington City and Lake Semester and I did it. I was the first one with a disability to finish it. Scarlett: So what did you do? Catherine: Yeah, what did you do there? Scarlett: Where was it at the time? Cosmo: It was on Arling Street. Scarlett: In which building? Cosmo: The Community Center. Scarlett: And what did you mainly do? Where did you go with BCL? Cosmo: Out in the community. We went to places in Burlington, Vermont. Catherine: And what were some things you did there? Scarlett: You talked to the mayor. Cosmo: I talked to the mayor. Scarlett: And you build. Cosmo: I build. Scarlett: Gardens. Cosmo: Gardens. Scarlett: What else did you do? Cosmo: And we had field trips. We went to Kesey Park in the New North End, Vermont. Scarlett: And you talk to native leadership, right? To Abenaki leadership? Cosmo: Yes. Scarlett: So it was something where you learned about the native, you went out with the research folk. Cosmo: I did. Catherine: So it sounds like you got to do a lot of different things in the community and meet a lot of different people. Cosmo: Yes. Scarlett: And they had very long and very difficult research work to do by themselves as homework. But they picked the topic within the unit they were doing at the moment, what they wanted to research could be anything loosely connected and you should have seen that. It was just amazing how all the students that are supposed to be no learners or dropouts and they suddenly thrived in that classroom. So did Cosmo. He wrote things that I didn’t think he could and he worked whole weekends just to get it done. So it was hard work. It was not a fun thing only, but it was purposeful. It had a purpose and they understood what they were learning, because they picked it themselves. So it was amazing. And I can only recommend more projects like this. In Europe that’s very common, project-based learning here is still not, but it can make a huge difference. Catherine: Yeah. So Cosmo, do you think doing those projects, did that help you figure out what you want to do with your business? Cosmo: Yes it does. Catherine: Because it sounds like you learned a lot of different skills by going all around the community and doing different things. Cosmo: Yes, I do. Scarlett: He did not only learn things, it is people learned about him and they learned about our other ethnicity students and they learn that other cultures can be really interesting and renewing for the community. And it’s a back and forth like that. Both sides learned a lot. And there’s just no place now that we can go and they don’t know Cosmo. I’m not worried. I can let him go and I know people know him and they would interact with him if he needed to. Right Cosmo? Cosmo: Right, ma. Catherine: Right? So Cosmo, could you tell me a little bit about what you’re hoping to do next or about your business once you finish this year? Cosmo: Yes. Scarlett: Get to start what you work at. Where did you work right now? Catherine: Oh yeah. Yeah. Tell me what you’re up to right now. I haven’t seen you in a while. What are you up to? Cosmo: I have been good. I’ve been very proud of me. I am self-advocating for myself. Catherine: That’s a beautiful thing, Cosmo. We all need to self-advocate for ourselves. Right? Scarlett: Who did you join, Cosmo? Cosmo: And I joined GMSA. Scarlett: The Green Mountain Self Advocates. And which group? Cosmo: I’m planning Voices [the Choices & Voices conference] every Monday. Catherine: That is so wonderful to hear. What a great group. Cosmo: And I went to several conferences in Burlington and in Massachusetts. Scarlett: But where did you work? Your friends, where did you work for a while and learned all abou

  3. 11/12/2024

    Episode 31: Kate Adams & Winnie Looby

    Kate Adams is an Indigenous Vermont artist with multiple disabilities, and in this episode of the show, she sits down with CDCI Academics Coordinator Winnie Looby. They talk about Kate’s work with her horses on disability and trauma, the messages carried by geese, and Kate’s life as an artist with ADHD. https://youtu.be/kh-UXBCa2MU Content notes: this episode contains brief mentions of domestic violence, and adult child death. Please decide how best to approach those topics for yourself. A full transcript of the episode appears below. Read more: Episode 31: Kate Adams & Winnie Looby Winnie Looby: Could you introduce yourself and tell us a little about your relationship with disability? Kate Adams: My given name at birth was Katherine Mary Adams, and then I grew up being called Kathy as my nickname. But then when I was finally at a point of realizing I needed to get out of an abusive marriage, and I realized that every time I saw in writing or heard someone say Kathy, that I cringed. I realized I need to change my nickname for a new beginning. And so I changed it to Kate. And so that is what I used when I signed my art. At the time, I didn’t know I was disabled, so to speak. And I became acquainted with Vermont Inclusive Arts Council because I do love the outdoors, and taking photos, and images, and sharing them. And I saw so much awful stuff on Facebook and all this other media that I said, “Well, at least I could share some good things.” And also that was important to my daughter in the last three years of her battle with three rare aggressive breast cancers. She says, “Mom, send me photos of my boys of the horses, of the sunrises, of the ducks.” And at the time I thought she just needed it as a distraction, a break from her work, or a distraction from the pain. But I eventually realized that it not only was an expression of my love to her, knowing that though I couldn’t be with her in person through this new technologies, I could send images of her of things that we both loved. And so it was like expressing my mother’s love. And I wanted to find more ways to share my images. And I have tried in the past to do exhibits and sell photography, and I was privileged to be honored as to do an exhibit for the gallery here in Springfield on the photos of the Lakota and Abenaki peoples. But I find that it’s very hard to sell things that way. Plus, if you don’t have the money to pay for good matting and frames, and I do it thrift store style. Okay? So when I saw this notice in the weekly flyer that came that said, “Still accepting entries for this exhibit,” which was called Masked, I thought, “Here’s another way.” And so I inquired, and of course it said people with disabilities. And so I contacted Heidi [Swevens, of Inclusive Arts Vermont] and she, I want to say is such a blessing. And for anyone that is listening to this and has some of their own challenges, I want to just encourage you that the folks at Inclusive Arts Council understand, and they’re very wise and kind. And so we had a number of phone conversations because I qualified on their terms of disability, three ways. PTSD. Well, I have more than simple PTSD. I have complex PTSD, which let me tell you, it is more complex. I have ADH, which I didn’t know till about 15 years ago. And so you could now call me ADH late diagnosis, which I’m learning. From what I’m learning through Zoom stuff, that’s even more complicated, and being indigenous. And these were all in the category. And I said, okay, first of all, I don’t like the word disabled, because it’s been used and the images, and the stereotypes, it’s been used so much in our culture in a very negative way. And I learned through my horses. My horses are family generation bred. They’re the old type Lippitt Morgans, which really connect with people. They’re very wise. They are healer teachers if you’re willing to be open to learn what they have to share. And I have two of my horses are ADH. And I learned when I started sharing my horses, horses that there was this thing about me that I knew that I was smart. I’d been told I was smart. I was the first in my family to go to college. I graduated from UVM in education in 1971. And when I went to education, I was a little small town girl, the town of Burlington was like. And my roommate had rows and rows of shoes. I had one or maybe two pairs of shoes. And I learned that people there thought that if you were in education, it was only because you weren’t smart enough to be in some other field where you could make more money. All right? Well, I was in education because I wanted to be a teacher. I loved learning and I loved sharing learning. And so I learned with kids and people that came to learn from my horse connection program, I knew who was ADH. And I would say to them, “I am ADH, but I won’t use the D for disorder because we are not defective. We are different, but not defective.” And so I had conversations with Heidi about all of this because then I had to decide, what part of my art do I want to share? It’s going to be photography, it’s going to be having to do with the outdoors. And how do I want to deal with this theme of masked? I could just go with, I could have taken, let me be blunt. It would’ve been the easier route to go with PTSD. All right? And say, “Here is an image of the outdoors of the Canada geese. The goose is brooding on her eggs,” which I have one over there brooding this morning. And I’m over there taking pictures of her this morning. And I’m learning from God’s creatures what is healthy father mother, male female role, which is not what I’ve been taught in the culture that I was raised in, in education, in family, in church, religious. So I knew I could just take an image, which is what I’ve done for this particular exhibit. It is simply an image of God’s creative beauty that I saw the morning that was the last day that I would be with my daughter on her earth journey. And the encouragement, the message that it was to me. But for masked, I felt like I was ready after a long journey searching, and be careful and quiet, because of those that would look at me and see my whiter skin and say, “You’re just a wannabe. You don’t know if you’re really Abenaki.” So I don’t know if once the tribes even got recognized, if I was eligible to apply. But about seven years ago, I did genealogy study. And so I found my native ancestors in Northeast and Northwest Vermont. And so I knew I could proceed with applying, but still I was even scared to. But I felt I wanted to honor that part of my ancestry as well as my Scottish ancestry, because my MacArthur Scottish ancestry came to Vermont from the clearances in Scotland when the controlling conquering did a clearance. So the MacArthurs came to Vermont in the early 1800s. And they chose Vermont, which I can understand. They love the hills, the mountains, the valleys, the greens. And so I was getting up to the deadline with her, but they were very gentle, and they said, “Okay, keep working on it. Go ahead, submit it.” And so I submitted what is my photo collage. I wanted the image of the circle, the sacred circle, the healing part of the journey. And I was learning, and I had to find a way to express who I was and others of us with differences, without using the word disability in the way it’s been perceived by myself. And maybe I’m more affected because I’m in my mid-seventies. So I’ve come up through more decades of the not understanding. I mean, when is it that they finally use the term ADH? And also with the PTSD. My PTSD was from abuse of the first marriage and domestic violence. So if I saw a state trooper at a gas station where I was getting gas, I would stop and I would go up to him and I would say, “Thank you, because I know one of the most dangerous roles of your work is when you go to deal with a domestic violence case.” And when I see a Vietnam veteran, I will go up and thank them for their service, but not only because they were so horribly abused, emotionally, physically, etc. when they came back, but because before the Vietnam War, we women and children would’ve been abused within the walls of our own homes were called crazy. And it was after Vietnam, and when men came back, and when there was a car backfire, and the guy dropped to the ground, and there was these men and women, but especially men struggling with the after effects of being in the horrors of war. But now we finally come up with the term, post-trauma stress disorder. Winnie: Right. Right. Right. Kate: So my coming to peace about that they’re going to still use the word disability and that I understand. And it’s like, but how could I be a part of bringing a different understanding to the word? Because our words, where they came from, the context, how they’ve been used in our society have meaning and impact. And so I equate it now to a horse race. In the thoroughbred horse race, if you’ve got a really winning thoroughbred and you’ve got a younger horse that’s coming along and they want to put the two together, but to make it a little more equal and fair to that younger, less experienced horse, they will give the other horse a handicap. They call it handicap, but not in a negative way. It’s giving that jockey more weight to carry, which means a horse has more weight to carry. And we have movies recently that share about this kind of story. And so I said, okay, I guess it’s more, I have this handicap, but it’s not handicapped in the cultural use of the word. Person that’s called handicapped is considered, let’s just not go there. When I was doing my horse program and getting certification, there was a group called Riding for the Handicapped. And so I knew I needed to get certification and credentials at fro. So for a while, I went through their protocols and I fina

    55 min

  4. 10/17/2024

    Episode 30: Jackie Feiss and Katy Gamelin

    Vermont-based physical therapist Katy Gamelin talks with CDCI’s very own Jackie Feiss about her experience of having POTS: Postural Orthostatic Tachycardia Syndrome. Jackie shares how she copes with this largely unknown chronic illness that affects all major body systems, along with the symptoms that led to her diagnosis, what it was like trying to get an accurate diagnosis, and some of the life hacks she’s developed in order to manage her life as an educational consultant, wife, and mom. “So, what three things am I going to prioritize today? I call it my ‘energy envelope’. And each day I might have a different amount of energy that I can give, based on my symptoms. So I really have to plan, you know? I wake up in the morning, and it’s like, ‘What can I do today?’ …It’s not that I want to be flaky, it’s just sometimes I can’t. I physically can’t. And that’s a hard pill to swallow.” https://youtu.be/nIL7seKJ14U A full transcript follows below. Katy Gamelin: So, hi everyone. This is Green Mountain Disability Stories and I am joined here today with Jackie Feiss. I will be your host. My name is Katy Gamelin. And just a brief description of myself before we turn it over to Jackie. I’m a physical therapist. I work at a clinic, outpatient clinic called Essex Physical Therapy, and that’s in Essex, Vermont. And I am a 50-year-old white female. I have probably shoulder-length blonde hair, wearing a blue shirt with a black sweater, and I’m sitting in my home office to record this right now. So let’s turn it over to Jackie and get to know Jackie a little bit. Jackie: Hey everyone. My name is Jackie Feiss. I am a 39-year-old white woman with brown hair that’s about shoulder-length. I’m wearing a black blouse and a pink sweater, drinking my cup of tea this morning. And I have a funky pair of glasses that are blue and brown. Katy: Nice. Jackie: I work at the Center on Disability and Community Inclusion as an educational consultant with the Vermont I-Team. And I know Katy because she’s my PT and she’s wonderful. Katy: So let’s talk about your work, what your life looks like on a day-to-day basis. Jackie: Yeah, so I live in Jericho, Vermont, and I am married, and I’ve got two little kids, two little girls who are nine and six. And my day to day looks drastically different based on how I’m feeling, but I am visiting schools, and seeing kids and teachers, and working on best practices and inclusive education. And I’m at home. Sometimes I am skiing, I am biking, I am outside. I am swimming in a pool or in the lake. Just being in nature is what our family enjoys doing. And on this side, I teach a dance class. I teach it now in an adapted way, but I’m able to do that again, which I really enjoy. Katy: That’s awesome. That’s great. So let’s talk a little bit about, you mentioned how your day-to-day looks different based on how you’re feeling. And that is because of what we’re here to talk about a little bit today. We’re going to talk about POTS as most people know it. So let’s talk a little bit about that and your experience with that disability. Jackie: Yeah. So I got diagnosed with POTS four years ago, and it was a life-altering diagnosis. Prior to having POTS, I had limitless energy. It was like, all right, I’m a mom of two young kids. I am married, in the thick of it. I’m working. And you just go, go, go, go, go. And you don’t even think about it. And you might be really tired at the end of the day, put your legs up and you’re just done. But you don’t have to manage and think about, “Okay, I can only manage three tasks in a day before I need to lay down. So what three things am I going to prioritize today?” I call it my energy envelope. And each day I might have a different amount of energy that I can give based on my symptoms. And so I really have to plan. I wake up in the morning and it’s like, “What can I do today and what do I have to give up and in order to be able to work and what can I do for my family while managing my work?” So it’s definitely something that is ever present, always on my mind, and something that I really have had to learn to manage over the last four years. I’ll say it affects every body system for me. And so it might present as light sensitivity, sound sensitivity, smell sensitivity. It might look like blurry vision, or I often tell Katy that it looks like there’s snow falling in front of my eyes. And that can be really disorienting when you are in public trying to navigate a very bright space. Sometimes it looks like pain, chest pain, feeling like I’m having a heart attack, but I’m not having a heart attack. Just pressure and pain. Sometimes it looks like tingling in my fingertips, numbness. It might look like a tremor. Sometimes a big tremor, sometimes a not noticeable tremor. It looks like my heart is speeding up really fast. So I had COVID a few weeks ago and my resting heart rate was about 120. And then you get up from there and it gets up to 200, and it can be very uncomfortable. It feels like you’re running a marathon while you’re trying to do simple everyday tasks like brush your teeth. Oh geez, I can go on. But it’s digestion. It’s getting a really big belly sometimes. I look like I’m nine months pregnant. And then the next morning it’s shrunk again. It affects everything that I do. Sometimes I slur my speech or I have brain fog and I can’t remember the word, and I’ll describe it. “It’s on the roof, and it has electricity, and it lights your house, and it makes your power bill less money.” And my husband’s like, “Oh, what are you trying to say right now?” So it’s getting creative too. Katy: Yeah, definitely. And you brought up just talking about how many different symptoms you have and all the systems that it impacts. I feel like that really touches on, that’s an important piece to note about dysautonomia in general. That’s part of the issue with these dysautonomias and also autoimmune disorders, that everyone looks different, no two patients look the same. And even within one patient you might have from hour to hour, even minute to minute, you might have a really different presentation. And I think that that’s such a key important thing. I’m going to say this out loud right away. I think that’s such a key important thing for healthcare practitioners to recognize because I think that’s part, and we’re going to get into this more I think down the road here in this interview. But I think that’s one of the challenges in the healthcare side of things is really understanding how much a diagnosis like this can encompass. I feel like we should take a step back and talk a little bit about what POTS is, just define it a little bit. Is that something that you feel like you’re comfortable doing? Jackie: Yeah, you want to do it together? I feel like between us, we could probably do it. Katy: We could do it together. Yeah. Jackie: So POTS is postural orthostatic tachycardia syndrome, which Katy said earlier, and it affects your autonomic nervous system. So all of the things that you regulate without thinking about it. Your blinking your blood pressure, your heart rate, your hormones, your digestion, all the things that your body does without you thinking about it. Katy: We often say autonomic is like automatic. That’s how you learn it. That’s how you can remember it really easily. The automatic system or the autonomic system. Jackie: And it’s typically treated by a cardiologist or a neurologist are the two people who tend to know more about it, but it is considered a neurological disorder. One that really impacts your, well, all your body systems. We talked about primarily, it’s diagnosed by an increase in your heart rate of 30 beats per minute change when you change position. So from laying down to sitting up, sitting up to standing up is really the only measure that they use to diagnose it, even though it affects everything. Katy: Yup. And then 40 beats in kids. So if you’re under 18, technically in pediatrics, it’s 40 beats per minute for the change. Yeah, and I think the mechanics behind that, in case that’s helpful for people to know, is just that the autonomic system, the blood vessels should contract. I do not have POTS, when I stand up, my blood vessels automatically because of my autonomic system contract, and it prevents my blood pressure from dropping really low or prevents the pooling of my blood down below my heart. And in people who have difficulties with our autonomic system in this way, that doesn’t happen. Those vasoconstrictions, they just don’t work. I shouldn’t say vasoconstrictions, I should say artery constrictions don’t work. And you get a lot of pooling down below the heart. And so that’s part of what, the heart has to work really hard to bring that heart rate back up to try to pull the blood back up towards your brain, which is one of the reasons why they use the heart rate to really figure out that and make that diagnosis. So I feel like that’s just helpful because maybe there are people who don’t know much about POTS. So we talked a little about what your everyday experiences, and what types of symptoms you have, and how much it impacts you. I’m just curious, I wanted to ask for everyone involved, what causes POTS? Some people talk about that or ask, might be thinking about that rather. What caused your POTS to kick in? Jackie: Well, it’s totally a mystery. So there’s several ways that you can get POTS. One is hormonal changes. So a lot of people get POTS right around the time that they become a young woman, because nine out of 10 times, it’s a woman that gets POTS or girls. So hormonal changes can cause it, or pregnancy. Getting a concussion can cause it. Having a large major surgery can cause it. Something about the anesthesia or just the changes. No on

    52 min

  5. 09/30/2024

    Episode 29: Lynn McNamara, Nature Conservancy Vermont

    In this episode of Green Mountain Disability Stories, we welcome Lynn McNamara, from the Nature Conservancy Vermont. Lynn joins CDCI Communications Manager Audrey Homan to talk about what the Nature Conservancy Vermont learned in building accessible natural outdoor areas in Monkton, and Hartland Vermont. “I think the trails that we’ve improved accessibility on also seem to protect the natural features more. We’ve found that our accessible trails and boardwalks hold up better to increased traffic. We have less erosion, and even with some of the storms that we’ve had in the last couple of years, they hold up better because they’re designed to have better drainage so that the surface stays level and firm for folks with disabilities. But it’s also protecting the natural areas around them a little better.” Lynn is the family member of someone with a disability. https://youtu.be/7hLHuPpZa1Q A full transcript for the episode appears below. You can also download the transcript. Audrey Homan: Welcome to Green Mountain Disability Stories. Today on the show, I have Lynn McNamara, who is going to talk to us about some accessibility challenges that have come up in Vermont, in Vermont’s outdoor natural areas. And Lynn is something of an expert in this area. So Lynn, can you go ahead and introduce yourself? Tell us your name, your pronouns, what town you live or work in and give us a brief verbal description of yourself. Lynn McNamara: Sure. So my name is Lynn McNamara and I use she/her pronouns. I’m the Stewardship Director at The Nature Conservancy based out of our Montpelier office. So I’m responsible for overseeing the management and monitoring of all of our conserved lands here in Vermont. Audrey: Fantastic. And can you tell us a little bit more about how your stewardship position interacts with access to those lands? Lynn: Sure. So to start with a little more about The Nature Conservancy, which I will try not to use acronyms, but if I say TNC, I’m referring to The Nature Conservancy, which is a global organization and we’re focused on protecting the lands and waters on which all life depends. And we do that in many ways all around the world from things like investing in water funds in Belize to supporting climate smart forestry practices, restoring American bison in the Great Plains. And here in Vermont, we own and manage about 57 natural areas that protect rare species or natural communities, do things like improve habitat connectivity for wildlife, but also provide opportunities for people to connect with nature. We think one of the most important ways to get people to support our work and care about conservation is to get out and experience nature. So as the Stewardship Director, my role is to maintain or improve the condition of these special places that we’ve protected and at the same time, provide a safe and welcoming experience for visitors. And so that also intersects with disability access because we want to, as much as we can, make these places accessible for everyone. Audrey: Thank you. Now, can you tell me a little bit about your own experience with disability in Vermont as a family member of someone with a disability? Lynn: Yeah. So in my 25 years or so of living in Vermont, I’ve been so happy to see how much improvement has been to disability access over the years, particularly in the outdoors. The efforts in the last five to 10 years to have more accessible trails across the state has been really wonderful and has made it possible for me to get out in nature with my stepfather who has a mobility disability. So as a kid, we did lots of outdoor activities like hiking and fishing and biking, but after my dad injured his back, those things were no longer possible. And when I first moved to Vermont after college, getting around and seeing the state was really difficult for him, especially in winter when snow and ice can make otherwise accessible areas, even sidewalks, really treacherous and sometimes just not possible. But I feel like that’s slowly improved. And especially in the last few years, it’s been great to bring him to some places that have accessible trails like Raven Ridge or the Barnes Camp Boardwalk up in Smuggler’s Notch. So I feel like things have really been improving fairly recently. The entrance to the new accessible boardwalk at the Raven Ridge Natural Area, Monkton VT.   Audrey: So have your dad’s experiences influenced how you approach your stewardship work with The Nature Conservancy? Lynn: Yeah, they definitely have. I think the first time I brought him out to visit one of our preserves, I don’t remember, it was maybe five years, it was before COVID, probably five years ago or so, but I’ve been working at The Nature Conservancy for almost 18 years and so he wasn’t able to see my work before then. Not really. I’d send pictures and things. But I think like most dads, he’s proud of what I do. And being able to show him firsthand was just really special for me. And it definitely has made me think more about what can I do to make these places more accessible for as many people as possible? I think it’s easy for folks to think like, “Well, Vermont is very hilly and steep and there’s no way that could be accessible.” And yes, a lot of places in Vermont are hilly and steep, but there’s a lot that are not and there’s many ways to improve accessibility for a variety of disabilities. It’s not always just for mobility access. Audrey: Now, The Nature Conservancy of Vermont has done work in the area of making some of the natural outdoor areas more accessible for people with mobility disabilities. Can you talk a little bit about what some of those processes have been like? Lynn: Yeah. Well, when we first started thinking about improving accessibility was probably maybe around 2012. And that started with our Eshqua Bog Natural Area, which is in Hartland, Vermont, just a few miles outside of downtown Woodstock. And it was one of our most visited natural areas. It’s beautiful bog, really it’s a fen, but it’s called a bog, that is home to thousands probably of showy lady’s slippers that bloom every June. And we had an old boardwalk there that was built before my time, I’m not quite sure when, but it had slowly been heaving and was sinking into the bog. It had no railings or bumpers and it could get pretty slippery. Lady’s slipper flowers. Photo via CC 2.0, flickr user pverdonk   And as it deteriorated, we also began hearing from visitors that it was no longer possible for them to visit with their parents or grandparents who loved to see the showy lady’s slippers. So when it was time to replace the boardwalk, I pushed hard to make sure that it met accessibility guidelines so that it would be welcoming for everyone, but it would also provide increased protection for the rare plants that live in the bog because it wouldn’t be sinking into the bog anymore. We were going to raise it up to get a little more light to improve the habitat for the plants. And that also meant people were less likely to step off the boardwalk into the bog and not trample plants as much. But this was a huge learning experience for me. I really had no idea what I was getting into. I’m like: “Oh, we’ll just replace the boardwalk, no big deal.” But there’s a lot of permitting involved that I wasn’t prepared for. So while the project sounded great, it took probably a year longer than planned just to complete the permitting and the fundraising that we needed to do. But in the end, we were able to raise the money through we had a state recreation trails program grant, we had some private foundations who supported the project as well as a lot of fundraising just through individual gifts. There were a lot of people who really support that kind of accessibility project. So even though the price tag was pretty big, I think in around 2013 when that happened, that project probably cost I want to say around $125,000, which was definitely probably the biggest stewardship project we had ever done on one of our preserves. But it’s been a wonderful success and we’ve had so much gratitude from folks that live nearby, plus folks that have traveled really from great distances to out there and visit. The accessible boardwalk at the Raven Ridge Natural Area includes seating set off from the main path.   It’s just really been a wonderful experience all around. Audrey: What’s one thing you’d really like listeners to know about your work with The Nature Conservancy expanding accessibility in Vermont’s outdoor natural areas? Lynn: I think not just for The Nature Conservancy expanding, but for so many state agencies and municipalities and Green Mountain National Forest, there are so many people working to expand accessibility to nature in Vermont right now. And I think people should not be resigned that they’re not welcome in nature, that there are a lot of people across the state who are working to improve accessibility all over the place. And while sometimes it can be difficult to find the places that are accessible just because I’m not really aware of one sort of repository that can tell you where they’re… Trailfinder and AllTrails have filters, but I feel like they’re not always super accurate. But I would tell people to not only find those places, but also continue to push for increased accessibility and improved access routes and public transportation to those places so that you’re able to get out there. If your town has a park or a town forest, talk to the select border or city council if you live in a city about improving accessibility and see if you can get involved in the public process to really help your voice be heard. Access to nature has been shown to have great benefits both for mental and physical health and that’s important for everyone. Audrey: I absolutely agree. Are you getting a lo

    28 min

  6. 09/05/2024

    Episode 28: Mel Houser & Winnie Looby

    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

    44 min

  7. 07/01/2024

    Episode 27: Mary Anne Lewis

    In this episode of Green Mountain Disability Stories, occupational therapist Adrienne Miao interviews occupational therapist Mary Anne Lewis. Mary Anne is also mom to Patrick, Desirée, and Dustin. Patrick is a Vermonter living with cerebral palsy and blindness, and as his mom, Mary Anne helps Patrick run his own successful business while she and her husband run a bed-and-breakfast in Vermont. MaryAnne shares what she and her family have learned about moving to Vermont and joining a new school, the overlap between her occupational therapist and parent roles, and the fine art of shipping jars of dry goods. “Patrick has used switches to control his environment for a long time. He has one switch that controls his music, another that turns on his fan and another that runs his blender. He also has another switch that is hooked up to a measuring cup on the end of a gooseneck. Patrick has used this device for years to help water the plants, help pour the milk for a milkshake, etc. As an Occupational Therapist, I was constantly thinking, ‘What could Patrick do vocationally, with his switches?’ And then it came to me that he could make layered jars of cookies, soups, etc., using his ‘pouring switch’. And thus, Purely Patrick was born.” https://youtu.be/YvVjE0gfJEc A full transcript appears below. Adrienne: All right. Thank you so much for joining me, Mary Anne. I’m so excited to get to talk to you! So this is the Green Mountain Disability Stories Podcast. My name is Adrienne Miao, and I am a community services coordinator at CDCI. And today, I have with me MaryAnne Lewis. I’m so excited to talk about her various connections to Vermont, to disability advocacy and to being a family member of someone with a disability. MaryAnne, can you tell us a little bit about yourself and about how you got into the profession that you ended up pursuing? Mary Anne: So I am an occupational therapist, currently retired, although I’ve maintained my license. I knew growing up I just always wanted to be in a helping profession. I was thinking I wanted to be a PT because I think, like the rest of the world, I knew more about PT than I did OT. It was actually my older brother who was an influence. He was studying pre-Med at a college that also had an OT major, and he said, “Why PT? Why not OT?” And I said, “Because I don’t really know much about it.” And he said, “Well, let me introduce you to some of my OT friends.” And so I spent a little time on the campus with him, and then I started volunteering for different OT departments to see what it was really truly like. And so he is exactly almost four years ahead of me, so he was gone off campus when I entered as a freshman, but it was really my brother who was influential in guiding me that direction. Adrienne: Well, okay. So this is a great transition to ask a little bit about your family. Do you mind sharing a little bit about your family? Mary Anne: No, not at all. So George and I had been married for seven years before we took the plunge to have kids. We had Europe on the bucket list and get a house on the bucket list. And so I was pregnant at 30, ended up in the hospital on the long term, high-risk OB-GYN unit. I had been minding my own business sitting in a grad class at Hopkins, and at that point, I was 20 weeks pregnant when my water broke. And so that was the beginning of a long and a short bed rest. So I was on bed rest in the hospital in entirety for six weeks, which feels like a long time, I wish it could have been longer. At 26 weeks, I had to have an emergency C-section and Patrick was born. So he was then in the NICU for about three and a half months, about 14 weeks premature. That was just about how long he was in the NICU. And then when Patrick — well, it was a process, but eventually, when Patrick was seven, we ended up adopting two kids. They’re siblings, and they were in the US foster care system, and they were out in Colorado. So we journeyed out there. There was quite a transition of getting to know them through their therapist, and they wanted George and I to just go and we said, “You know what? Patrick is part of the family, we’re not going without Patrick.” But we did realize there would be times when the very first meeting may not have been, it might’ve been overwhelming to meet Patrick at that point. So then my parents said, “Well, we’ll go along too.” So it was quite the contingency that went along to Colorado and it was a week of us visiting them at their foster home, to them staying with us at the hotel and just visiting the foster home, so it was a interesting transition. And so we went to Colorado as a group of five. We came back as a group of seven. So those two, Dustin and Desirée, had been in six different foster homes by the age of five and six. So they’re all very close. They’re about a year, at that point, they were five, six and seven and so I had three kids on three IEPs. And so that’s probably a story for a whole other day. But they’re doing very well. They’re all on their own now and independent. Patrick lives with us, but Dustin and Desirée are living on their own. Adrienne: Oh, that’s wonderful. So can I ask, it sounds like you probably had to start explaining disability to children at a fairly early age when children were fairly young. Mary Anne: Yes, absolutely. And kids are actually sometimes more understanding and more accepting than adults are. Patrick loves the pool, he always has loved to swim. And so we planned it that the first time, and we knew that Dustin and Desiree really enjoyed the water, so we made sure we had a hotel that had a pool. Patrick was already in the pool, his wheelchair was off to the side. He was swimming happily in his way that he swims. I always say it’s like a convoluted butterfly, he really is amazing in the water. Image courtesy MaryAnne Lewis And so the kids met Patrick in the pool. And so I felt like that leveled the playing field a little bit, and everyone was just splashing and playing and having a good time. And I don’t even think they really realized initially that Patrick was not verbal. Everyone was just so excited and wound up and happy to be swimming. And then we just answered questions honestly as it came. We had sent them a big scrapbook ahead of time. And so in there we had pictures of Patrick in his wheelchair, pictures of the ramp at the house, pictures of the adapted lift van and some explanation of Patrick doesn’t see, Patrick uses different ways to communicate than we do, his legs don’t work like yours and ours do. And so they had some introduction before they had met Patrick. Adrienne: I love that. I just think it’s such a thoughtful and creative and a very OT way to think about play as the common thread, and bringing people together in a setting that’s very comfortable for children and very exciting. Mary Anne: So the funniest, we took a lot of pictures, as you can imagine, that first meeting in the pool. The funniest picture is my dad diving. My dad was a very good swimmer, diving right below above the sign that says no diving. And the kids never let him forget, especially as they got older and they like to look at those pictures, they’re like, “Look at grandpa, he’s a rule breaker.” Adrienne: This is where you got the silo thing. It was a… Mary Anne: Right, right. Adrienne: First down. Mary Anne: It’s not my fault. Adrienne: Had you worked in pediatrics at all or were you an adult OT? Mary Anne: No, I had worked in adult OT. I had always done adult rehab. One of my internships was in adult rehab and I really enjoyed it, and that’s what I was comfortable in. And so I had always done adult rehab. After Patrick was born, I thought, “Oh, there’s a whole world of pediatrics I never really thought much about.” And I quickly learned that they’re not just little adults. Adrienne: No, Right. Mary Anne: Like reflexes, let me go back to my textbook. I would’ve said internet had it been now, but there was no internet at that point. So I switched, I transitioned to a… I had been at that point, a director of a fairly large OT department in a hospital in Baltimore that had rehab. It had acute care and it had inpatient. But so I switched to a pediatric hospital and I feel like it was this symbiotic relationship. I was learning what I was doing with the kids and I’d take it home and do it with Patrick, and then I’d get an idea when he was at therapy and I’d be like, “Oh, that’s a good idea for such and such.” So it worked both ways. And I was there about two years, and then I transitioned to the Maryland School for the Blind. Patrick was actually there as a student in the infant toddler program. And so I went on Fridays to understand the program more. And I’ll never forget, he was on a platform swing with an OT, and she said, “So what do you do?” And I said, “Well, actually, I’m an OT.” So she said, “We just lost our supervisor. You want to come?” So I was like, “Well, I think that’s a conflict of interest.” Well, every Friday I met this therapist with Patrick on the swing, and every Friday she’s like, “Did you change your mind yet?” So anyway, I thought, well, summer’s off, there’s something to be said for that. And if it is a conflict of interest, I can find another OT job in a second, and Patrick can stay put. And so 16 years later, I was still there and loving it and probably would still be there to this day if we hadn’t moved to Vermont, which again is another story. Adrienne: So could you tell us a little bit more about Patrick and what it was like maybe in the early years when he started in the school system? Mary Anne: Well, so let me back up, because I don’t think I’ve really told you Patrick’s diagnosis. Adrienne: Yeah. Mary Anne: The first diagnosis that Patrick received was retinopathy of prematurity, a

    1h 6m

  8. 05/28/2024

    Episode 26: Long COVID and the Vermont Center for Independent Living (VCIL)

    In this episode, executive director Jesse Suter talks about Long COVID with Krista Coombs and Kate Larose. Krista and Kate both work at the Vermont Center for Independent Living (VCIL), and both of them have firsthand experience of being, being with, and supporting COVID “Longhaulers”. (‘Longhauler” is a nickname for people with Long COVID). The three of them talk about changes in disability equity and healthcare in Vermont as a result of the COVID pandemic, as well as some of the work VCIL has been doing to support people disabled by COVID. https://youtu.be/QLLbmYUA5YE Important Links: VCIL Long COVID Peer Support Group (meets every Tuesday, 11am EST) UVM Health Network COVID Recovery Program Dartmouth Long COVID Clinic A full transcript of this episode appears below. Jesse: So hello, everyone. My name is Jesse Suter. I am a 50-year-old white bald man with short facial hair wearing a white-blue shirt in front of a blurred background. I’m here with Kate Larose and Krista Coombs to talk about their work focused on pandemic support and advocacy for Vermonters with disabilities. They lead the pandemic equity team at the Vermont Center for Independent Living. Thank you so much for doing this. I’m really excited to get a chance to talk with you. Kate: Thanks. Krista: Thank you. Jesse: So we’ll start with, or I’m going to ask you to please introduce yourselves by telling us who you are, where in Vermont you’re from, and your connection to disability. Kate: Go ahead, Krista. Krista: Okay. Hi, I’m Krista Coombs. I am a 51-year-old woman, white skin, long brown hair with some oversized blue glasses. I’m sitting on my bed where I often do work from home. I’m down in Bennington, Vermont. I’ve been living here since 2016. My family moved here from Philadelphia and I also grew up in our south of here in the hill towns of Massachusetts in a really rural town. We have a beautiful property here with chickens and dogs and cats and a big garden and fruit trees. I used to have an acupuncture practice since 2002, and then I needed to pivot as I became sick from COVID in twenty-twenty, and I’ve never really recovered. I became disabled and I’m not able to do the things that I once was able to. I have a family history of long illnesses from infections from once I was a child to now, and actually my grandmother died of bulbar polio when my mother was 7 and she was 27. I’ve always actually been concerned about viruses, and for some reason I was really taken off guard with COVID and I wasn’t really paying attention even though many of my friends were sick here in early February through early March 2020 as were we. I started shifting my focus to understand what was happening to myself and my family, and I started to study more seriously what people had been doing in the past to help with other infectious triggered illnesses with similar symptoms and conditions such as the ones we were experiencing.  Since we didn’t have a positive COVID test as I was sick before any of this was possible, that also made everything a lot more difficult, and I began to understand more and more about invisible illness and how under-recognized it is and how debilitating it could be. It took until the fall of 2020 for me to actually hear the word long COVID and immediately it was like a piece of the puzzle suddenly fit. Ed Yong had written an article in The Atlantic and that was the first I heard about it. I really didn’t want anyone else to be sick like we were or be alone going through it. I started talking to Kate at VCIL and I learned about the pandemic equity team and that there was a place for me there. My position at VCIL is long COVID advocate and I work part-time, flexible hours from home, and I started in March of 2023. In terms of my connection to disability, I’m newly disabled with chronic illness and I have many new diagnoses, especially this past year of 2023, such as something called myalgic encephalomyelitis, often called chronic fatigue syndrome, and also a newly identified immune deficiency that requires me to have home healthcare with weekly infusions at home. I’ve been mostly housebound and bedbound and I manage a lot of my symptoms that often fluctuate in severity. So far, the first two years were really the worst and I have stabilized a lot. I have a lot of difficulty with memory and organization, and a lot of my senses have all been scrambled, so I’ve been finding ways to accommodate my new disabilities. Jesse: Well, Krista, thank you so much for sharing all of that and welcome. Kate? Kate: Yeah, hi. Thanks so much, Jesse. My name is Kate Larose, she/her pronouns. I am middle-aged white woman with long brown hair, blue glasses, and today I’m wearing a blue dress with a silver necklace with pearls. So I became disabled about six years ago now. I experienced a traumatic brain injury. And at the time, I was working for a community action program working to support primarily folks who were living in poverty and people who had disabilities. And I thought I knew a lot about the realm of disability and systemic ableism at the time, given the work that I had done. And it wasn’t until I became disabled and really experienced firsthand what it’s like to be systemically excluded from things like the workforce, education, civic participation, health care, et cetera, et cetera, that I really started to get it and unravel my own internal ableism. Shortly thereafter, the pandemic began and my child and my husband are both immune-compromised and we tried really hard to make sure that we could do all the mitigations we could to protect ourselves. And unfortunately last year in April, once healthcare dropped masking, individual actions were no longer enough. My husband became completely disabled with long COVID in August, he spends almost 24 hours a day in bed. He hasn’t been able to work. I am now a caregiver for someone who used to be my caregiver, and we are continuing to navigate this both for ourselves and in the context of VCIL using our lived experience to make it easier for other folks too. Jesse: Thank you, Kate. And we’re going to talk about some of your work with the pandemic equity team, but I just want to say I really appreciate that you both have the lived experience. As you said, Kate, you have an understanding of this at a much deeper level and a much different level than most. So we’ll talk about that. I do want to take a step back because you both work at the Vermont Center for Independent Living, which we’re also shortening to say VCIL. Can you tell us a little bit about the organization and what VCIL’s connection is to long COVID? Kate: Yeah, thank you for that question. So at VCIL, we are people with disabilities working together for dignity, independence, and civil rights. So as one of over 400 centers for independent living across the country, we have in our bones as a center for independent living and as part of our history, this is what we do. I want to talk a little bit more when we get into it later on, the history, the intersectionality of post-viral illness as a foundational core of the work that we do and as a foundational core of disability rights today as we know it. But this is what we do around the state. We are a center for independent living with the pandemic equity team in particular, we continue to assess and respond to the current and ongoing pandemic related issues Vermonters with disabilities are experiencing, that includes COVID long haulers, and that includes developing resources and community, supporting people and advocating for equal access to education, healthcare, and civic life. Krista: This is Krista. I just wanted to add, for me, coming to VCIL, the model of independent living and peer support has been something that I wasn’t really aware of before, the power of peers and the power that everyone is unique with individual needs and what I was doing on my own was trying to identify what those were, and it’s so much easier to identify it with other people sometimes and get advice from people who also know some things that are similar in their lives. So peer support for me has really changed how I view things and it’s just a really powerful way of being together and sharing resources. Jesse: Great. Thank you both for sharing that. And Kate, I appreciate that you’re, I think, foreshadowing something that you’re going to bring up later in the conversation, the historical connections. So we’ve used the term long COVID a few times and how it affects Vermonters. So let’s start with what’s a good definition of long COVID, and you’ve both already shared a little bit about your experiences. You might want to share a little bit more if you’d like or maybe just start us off with a definition. Krista: Sure, I’ll take that. So the definition is complicated and it’s not really completely agreed upon. So I’m just saying that outright right now, The National Academies of Science has a working group that has been coming out with a definition probably in June and July of this year. And that has patients, researchers, all sorts of stakeholders involved in trying to figure out what the definition is. So to start with long COVID, it also has other names like post-acute sequelae to COVID-19, post-COVID conditions. Long COVID is a patient term. It was started in 2020 actually on Twitter and there’s been papers about it. So for me, I call it long COVID. And for these purposes, I probably will continue to call it long COVID throughout. So I’m going to use the WHO definition just because they start with symptoms that last more than two months that start within three months from onset. This is where it can get tricky. Some people will have symptoms that continue once they get the infection and just continue out. Other people will seem to recover and then three months later, all of a sudden they’ll have a huge decli

    1 hr
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About

Stories about living with disabilities in Vermont — the Green Mountain State. As told by, with, and for Vermonters with disabilities.

Information

  • Creator
    Green Mountain Disability Stories
  • Years Active
    2023 - 2025
  • Episodes
    33
  • Rating
    Clean
  • Copyright
    © UVM Center on Disability & Community Inclusion, Creative Commons 4.0 AT-NC-SA
  • Show Website
    Green Mountain Disability Stories