Green Mountain Disability Stories

Green Mountain Disability Stories
Green Mountain Disability Stories

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

  1. NOV 12

    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

  2. OCT 17

    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

  3. SEP 30

    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

  4. SEP 5

    Episode 28: Mel Houser

    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

  5. JUL 1

    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

  6. MAY 28

    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

  7. APR 29

    Episode 25: Adrienne Miao and Matthew LeFluer

    Adrienne Miao interviews Matthew LeFluer, a self-advocate with autism. Matthew works extensively on committees with disability organizations and the State of Vermont -- including the CDCI Community Advisory Council. Matthew has a lot of experience with disability service systems in Vermont, and he has a lot of advice for how to make those systems work better.

    57 min

  8. MAR 22

    Episode 24: Phoebe Chestna and Ben Wimett

    In this episode, occupational therapist Phoebe Chestna interviews Ben Wimett. Ben is a lifelong Vermonter, living down in Brandon, Vermont, with his dog, Pepper. Ben also has cerebral palsy, and works as an assistive technology provider with the Vermont Assistive Technology Project. And Ben's here to share his stories of navigating Vermont schools (and snowbanks!), how power wheelchairs have changed over the years, and his advice to children with disabilities -- and their parents. "The biggest advice I can give you is that if something happens, it's not your fault. The biggest thing I can tell you is deal with the cards that you're dealt. And I think the way my family did that is, yeah, I had to do things differently, but if I wanted to do something, we did it."

    38 min
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Ratings & Reviews

5
out of 5
2 Ratings

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 - 2024
  • Episodes
    31
  • 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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