Green Mountain Disability Stories

Green Mountain Disability Stories
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Green Mountain Disability Stories

Stories by, with, and for Vermonters with disabilities, of disability in the Green Mountain State of Vermont.

  1. MAR 25

    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...

    57 min

  2. FEB 10

    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,

  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. 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.

    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 f...

    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. Lynn is the family member of someone with a disability. "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."

    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 ...

    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.

    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.

    1 hr
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    About

    Stories by, with, and for Vermonters with disabilities, of disability in the Green Mountain State of Vermont.

    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

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