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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.

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episode Episode 33: Karen J. Lloyd & Heidi Swevens artwork

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. A TV tray table laid out with a canvas of a phoenix with paints and photos of various birds. The table sits in front of a glass door leading to a small deck thronged with plants. [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/lloyd1-849x1024.jpg] 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. A close-up of the background of the painting, showing brushstrokes in bright blue, dark blue and lavender [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/lloyd2-848x1024.jpg] 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. A screenshot from Karen J Lloyd's Nature Heart Studio Facebook Page, showing a phoenix outlined in red Sharpie. Text: "A Phoenix Rising sketch with a red Sharpie marker on a Post-It note, created in a lightning fast 30 seconds before going to bed... I'm feeling really drawn to someday soon getting to further know this inspiring, mythical creature with an acrylic painting on canvas..." [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/lloyd3-843x1024.jpg] 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 unless you’ve experienced something you can never fully understand what someone else has gone through. And there’s no way I would’ve really understood what it was like to have a chronic illness or disability if I hadn’t gone through what I’ve gone through. And so I think in some ways it does enrich our lives too. And having that ability to understand more people than I would’ve ever had if I had lived my whole life being really healthy and always being able to rely on myself. And with this phoenix wing, it was like a part of it was broken off temporarily, it’s literally missing and chunk away and having to reimagine a new version of it. And having to trust that it could come out on the other side. And I’m glad now that I did because here’s the new version and I was much happier with it. It just felt balanced and I liked the flow of it so much better. Just the way that the feathers are breaking off just felt right the second time. So, it was worth taking the risk even though it was definitely nerve wracking initially. Heidi: Yeah, I mean I’m just appreciating the feelings and your experience as an artist and as a human and my hands are moving now. I don’t know if they’re on the screen, but I’m sort of in my body as I’m listening to you and I don’t know that I’ve considered how choice points and creativity also can bring the sensations of scared in a way as well as excitement and joy and thrill. Yeah, I think that’s why I paused there and just noticed– Karen: I think I already cared enough about the phoenix at this point that I’m afraid to ruin it. And I think as artists there’s always those pieces where you think, oh gosh, I went too far, I should have stopped earlier. And the one benefit to this being acrylics was it was a little bit easier to cover up as opposed to say if it was watercolors or something like that. And so I’m glad that I pushed through because I almost didn’t. It would’ve been easier to just be like, okay, this is just the way it is. Three photos labeled "Before", "Being Re-born" and "After" showing small changes to the phoenix in the painting [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/in-progress-montage.001-1024x576.png] And I think even for myself in the past, especially the past couple of years, I having to look to things differently and getting creative with solutions for even just my daily life and being a disabled person, I think a lot of people don’t even think about how something as simple as taking out the trash would be something to have to consider. But for myself, because I can’t do really heavy weight, it was finding new ways that worked for myself so that I could be independent about it because I have to ask someone for that help every single week didn’t feel good either. And so that balance of trying to find more ways that I could sort of live on my own that were not the way I had been living for 18 years. Heidi: Yeah, yeah. It’s just beautiful how this, to me anyway, that the story of your journey is coming through your description of the process for creating the phoenix. And the detail that you’re describing and the close-ups of … so the painting is an eight by 10, and when we kind of get to the culmination, I’ll ask if you can do sort of an overview of the verbal description, but all of these details, I mean I don’t know how tiny actually the brushstrokes are, but I remember hearing how, I mean just the detailed bits of it were so minute and so deliberate that as you described the details of what you’ve included in the piece and I know other artists have done this too. There’s symbolism, there’s meaning. So, it’s often more than just what you’re looking at when you go to a deeper understanding of a piece. And I’m really hearing that now. Karen: It was beyond just a very basic sort of phoenix symbol. It’s one piece of it that I’m actually especially proud of because whether I was painting of like a sad portrait of a pet or painting a mythological creature, I feel like the eye is really like the doorway to the soul, you know, or the window to the soul where it really gives an impression of its personality and really gives an overall sense of: who is this creature? With the phoenix, it was really important to me for it to have both the strength to it so that it seemed wise and it seemed strong and very sure of itself. But I also wanted it to show kindness and, you know, for it to really feel like it’s gazing at the viewer almost like with empathy. And so even though it’s a strong creature, it’s not one that’s out to harm. It’s not angry, It’s not you know, there’s no ill intent with it. And I really felt like I was able to capture what I was hoping to see was that I so for me, that was huge. And it’s you know, it’s the time here, this little piece of the canvas, but that little that little bit of canvas of his eye really, to me is what really sort of brings it all together, because it’s really sort of the soul of the painting and in this view of this close up, you can also see its head feathers. Close-up of the phoenix's head showing three small feathers. [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/lloyd8-854x1024.jpg] And those are very deliberately chosen to do the three because I was thinking of like the Trinity, which was a nod to my faith. And also I made them like little flames, both because it’s a phoenix, but also because it was going to be my birthday. And so they’re like the candles. This piece, I definitely wanted to include a lot of symbolism of myself. And so even though it’s not obvious because it’s not like I put in a strawberry blonde white girl into the painting and there’s no bunnies, there’s no horses, it’s not like it says Lyme Disease on it or something. It felt like there was so many symbols that I snuck in and when I look at it feels very personal. And so it was beyond just a very basic sort of phoenix symbol. And I’m laughing because I have a young teenager bunny, speaking about bunnies. Sky is having fun playing in the background right now, so if you hear banging. Heidi: And my cats are quiet for the moment. So, you were just describing how personal this is to you, or maybe I was suggesting the back and forth of that. And it’s also, this has been traveling in the show, traveling the state, it’s been online. I think the phoenix symbolism is something that’s very relatable to humans right now. And so while it’s deeply personal, it also is kind of universal or relatable and I think lots of time art can be that bridge for from human to human. Yeah. So, it’s really, I’m smiling, I’ve heard some of these details before just because we’ve known each other for a while in the context that we have, but it’s really fun to hear them again and I hope the audience is appreciating as well. Karen: So, its tail feathers were very much inspired by peacocks and so they have the very classic peacock eyes. And to me that was even a nod to, I was very much getting through the pandemic and just life in general with the help of meditation. And so I was on Insight Timer [https://insighttimer.com/] in particular quite a lot. And so I felt like kind of the head feathers being the Trinity to me. And that part of my faith that the tail represented that piece of my life of meditation. And so the third eye, so I did three eye feathers, so that was a very deliberate choice, a number of tail feathers. a painting of a phoenix doe in rich ruby reds and scarlets, with fiery wingtips and light yellow peacock feathers at the tail, rising against a background of busy teal brush strokes. [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/phoenix-on-background.001-1024x576.png] So, this is the completed phoenix, this was the final version and this is how people now see it out in the world. So, we have the background with all its beautiful blues and teals and all that movement. And then the phoenix itself basically centered on the canvas that was, as we said before, the eight by 10 and its tail flows down to the lower right corner. So, the very bottom of the tail actually touches the edge of the canvas on the bottom and its wings are very open and widespread and up. So, it has to me a very empowering feel because it’s opened the edges of the wing feathers, especially on the tops are lots of goldens, so yellows and oranges and very flame, what we would think of as sort of flame colors going into a deeper red as you get further into the wing. And then the most inner wing feathers being smaller and being shades of purple like lavenders and then sort of a wisteria purple and violets and sort of dark purples. And its face, it’s turning to the left and you can see its eye looking at the viewer and it has the three head feathers with the little flames. Its beak is gray. And then as a nod to the peacock, it actually has a little bit of white markings around the face, which is otherwise red. And then down it has that longish neck like a peacock. And then going into its body, its body being all reds, different shades of reds. And then it has gray for its legs and its feet with the little lavender toenails and then into the tail. And just like with the wings, the tail feathers also have some feathers that are disconnected. And so I thought of it as sort of the pieces falling away. So, there’s almost symbolic of discarding. So, some of the feathers not needed anymore can just fall off. And so there’s a bit of that. And even the idea of some feathers may be growing in, so sort of new appearing and the old that aren’t needed anymore going away. And there’s a little bit of tiny bit of purple detail at the base of the tail, and then it sort of goes into the real peacock-like feathers with the longer, or I don’t even know what to call them, the little tendrils of yellow and then the three eyes of the tail feathers. Heidi: Thank you. Thanks so much, Karen, for sharing the details of your creative process with the phoenix piece, and I’m wondering if there’s anything else you want to share about the phoenix, and then we’ll kind of pull back and go to a broader sense of Karen as a disabled artist and what else you might want to share about that. So, anything else about the phoenix? Karen: Sure. So, what comes to mind to me is when it’s been out in public, just the response from others because it’s such a personal piece to me. And so of course I put my own stories into the details in my mind, but anyone who’s viewing it, they’re not necessarily even knowing my stories, but hearing feedback from other people who saw it and how much it resonated for them and had such an impact for them really has meant a lot to me. And there’s two different times that in particular that’s really happened where the first was a couple years ago at the Champlain Valley Fair, I actually submitted it in the acrylic division, not for sale because I can’t have it sold, but it was on display. And the day that I went to pick it up, I never expected to have another sort of artist entry person come up to me and say anything. And this dad was so excited that I was there at the same time he and his son were, because it turns out that his child was so fascinated by my phoenix to the point that even when they went home, he was telling his parents how it was his favorite piece and the whole Champlain Valley Fair Art exhibit, which if any of you have been there before, it’s huge. There’s many different mediums, everything from photography to watercolors, acrylics, oils and some sculptures and a lot. They usually have a few hundred people. And so it is not a small show by any means. And to hear that it had that effect on a young boy really meant a lot to me that he wasn’t just in the moment like, wow, that’s cool that he actually was talking about it to his parents even afterwards and wants to create his own phoenix because of seeing that. Heidi: Oh yeah, well, I’m smiling really, yeah. [inaudible 00:25:26]- Karen: Yeah, just think of inspiring the next generation. And then the other, for me, really special moment just happened last Thursday. So, basically we had an art reception where I got to see you, Heidi, because it was Inclusive Arts, the CYCLES exhibit over at the University of Vermont at the CDCI in their hallway. A pale-skinned white woman with glasses and long wavy strawberry blonde hair worn loose past her shoulders, stands smiling next to the painting, "Phoenix Rising". She is wearing a nametag that reads "Karen Lloyd". [/blog/cdciresources/wp-content/uploads/sites/3/2025/03/lloyd15a-1024x720.jpg] And getting to speak with a woman who also was really moved by the phoenix and some of the things that she shared and how it was really resonating for her because of what she’s going through in her life. And then even some of the parallels of some of my stories and hers, even some of the commonalities, really powerful for me to sort of hear that. And as an artist, most of the time I’m creating, hoping that it has an impact to others. And this was unusually personal, and yet I think more than maybe anything else I’ve done for painting, it’s been the piece that has had an impact on others, which is really special. Heidi: Yeah, thank you for that. And am so grateful that you had a chance to actually experience the impact of your art from some people in the community. I think often I heard from artists or hear from artists and people create for themselves, there’s a part of creativity, and this is not academic or anything, but it just seems like the human part. There’s a part of creativity that we do for ourselves because we need to, because there’s things inside that want to come out because we’re inspired and it’s very private and there’s this whole other part, whereas how it’s received, the connections that it makes, the meaning that others receive from it, even if it’s not exactly what the artist had intended. There’s this sort of magical part of, or synchronous part of art being shared. So, I’m really, really glad to hear that you have that. Karen: Yeah, we don’t always get to hear what the viewer’s experience is, so even that is pretty special to actually get to hear the feedback in person. People are seeing art, but as the artist, we’re often not there, so we don’t get to hear what their experience of it is. So, it meant a lot to me to get some of these bits of feedback. Heidi: Yeah, yeah. Beautiful. We’re going to shift for a moment to sort of Karen as the artist with disability. So, I’m curious if you want to offer some thoughts about how disability and creativity and art intersect or relate for you as Karen in this moment, 2024. Karen: They very much so do, because when I went to UVM, I was originally there as an animal science major, and then I got Lyme and my brain didn’t work the same anymore. And I realized realistically, being a veterinarian and going to veterinary school, it was just not going to be in the cards in this life for me. And I switched to being an English major with an animal science minor, so I still, because I almost had that major completed, so I sort of kept that too, but it was graduating and then trying to work full time, my health was really impacting me, and I got to the point where it couldn’t be ignored. It just got to a level where I couldn’t hide it. I couldn’t work around it enough anymore. And so it’d be 11 years ago now that I officially became legally disabled. And my mom actually often will tell me that she feels like God gave me the gift of art because I would need that as a life purpose after my own plans got changed. And when I was a young kid, I had that dream actually of being an artist. That was my original dream was to be an artist. I remember being in third grade and I really wanted to be an illustrator and also a writer. So, I had these thoughts of making these children’s books that I would do everything I would do. All the beautiful illustrations that went along with the story. And so in a weird roundabout way, becoming disabled allowed me to focus on my art again in a way that I maybe wouldn’t have had if I was working a full-time job and doing all the things that people do when they’re not dealing with disability. And so it’s tricky because all the things that make it difficult to have a real job still impact me as an artist too. So, having the fatigue makes it hard to be as productive. Having the brain fog makes it harder to get anything done or to push through. And I actually struggle a lot with migraines. And so that’s been a big limiting factor also. And so it’s interesting because it’s kind of this weird thing where on the one hand, disability allows me to be an artist in a way that I don’t think I would have otherwise. But it also does create limitations for me that I’m not a very fast producer of art. I’m definitely much more limited in my output than I wish I was. So, that’s sometimes hard of, especially nowadays when social media is huge, and especially as an artist is helpful to be part of Instagram and Facebook to get our work seen. But sometimes it can be challenging to see what everyone else is doing who’s able-bodied and who’s healthy, and they’re able to crank out all these pieces and it’s like, oh. And so that struggle of having to not be so hard on myself that what they can do and what I can are not the same, and having to have some grace for myself that that’s just not my path as an artist. I’m not going to be the one who’s making record numbers of pieces. Heidi: As I listen to you describe that, I feel like the societal layers in my hands are kind of moving outward of expectations and ableism and the ways that sort of intersects with life or disabled people. It’s a part. And in some ways, society connects that with value that are very, I feel like very misled and not true. But there’s a lot of to challenge with the monetizing of value, and this may not be the place for it, but to hear you talk about your art and what might be helpful for artists that don’t have disabilities, it’s not like apples and apples for [inaudible 00:33:36]. Is that accurate or maybe [inaudible 00:33:38]- Karen: Yeah, that really resonates. I think there is a lot of ableism that happens even within the art community. I think it’s easy to think of artists and art and art community as being more progressive. And perhaps to some degree that is true, but I think there is a lot of ableism that it’s so internalized that people don’t even realize. And so there’s a lot of comments that happen that people don’t even understand how it comes off and how hurtful it can feel to those of us who are a disabled artist. I have definitely struggled with that at times where someone says something and it’s like, whew. And I don’t think they mean it the way it is, if that makes sense. Heidi: Yeah. Karen:  It’s just not an awareness often. Heidi: And I know I’ve worked through and continue to work through my own internalized ableism, so it’s something, it’s like a lot of the internalized isms. And when I was hearing you all the productivity and the things that you sort of wish for me that just, I felt that in my heart as because the world of what we understand is valuable or “successful” is not always the path. I think you said it very beautifully. So, that’s not my path as an artist. Karen: And there was a lot of grief. When I left, I was working at [Vermont Student Assistance Corporation] at the time, was my last full-time job, and there was a lot of grief in that officially applying for disability and basically admitting: I am disabled. That was hard. And I think a lot of that does come from even the internalized sort of anti-disabledness that we have in our society that we all want to be able-bodied because that’s celebrated. You know what I mean? And like you said about value, I think it makes it harder for those of us who are going through something and it’s not like we have a choice most of the time. Usually we don’t in these situations, and it’s simply what is happening and we have to learn to do the best we can with it. But I think for me, we all have, even those of us who are disabled, we still have that internalized because of the society that we grew up in and that we live in still. These expectations that are put on us by others, but also on ourselves. And so that’s something that I definitely struggled with for a long time and I think has gotten somewhat better compared to 11 years ago when I was first dealing with it. I think now I can even say a bit almost with pride, like, yes, I’m a disabled artist, whereas that would’ve been really hard I think initially to say that. Heidi: Yeah. Thank you for that, that add-on to the conversation, that initial question around the intersection of art and disability for you or creativity. And I would like to ask you next about challenges you face as an artist and then stay tuned for that. What supports your creativity? So, there’s a both and to that for this next little bit. So, you mentioned some of them, but just in case there’s any that you didn’t share for challenges, an artist in Vermont. Karen: I think sometimes accessibility if it’s not with an organization, so say if there’s an art reception, for example, if it’s not with an organization like Inclusive Arts Vermont or UVM CDCI where there’s more awareness of what is even accessibility and what needs could artists maybe have a typical art exhibit around here, at least in my experience has been, for example, just a lack of chairs. And for someone like myself where I have a lot of physical pain and a lot of fatigue, and that varies. It varies on the day, it varies even within the day. And on a rough day especially, I really am going to need to be able to sit down and if I don’t have the ability to at all, that would mean having to leave early or not being able to attend. And so I’ve really appreciated with VSA and then Inclusive Arts through all the exhibits that we’ve had, having that as just contacting you to just let you know, “Hey, I need a chair by my piece.” And to be able to have that as an option if I need to use it. And I usually do at some point take a break and it’s hard. I think that’s another thing with disability. People almost I think had this weird, I don’t know what to call it, a limitation almost of like, oh, you need to be in a wheelchair or using a cane to need that kind of accessibility. But that’s not true. So, many of us who are in between where, yes, I can walk and yes, I can stand, but I can’t do it for as long as most other people can. And so in my experience, that’s something that I hope changes in general in Vermont with art when there is a big show on an art exhibit that we have that open of, okay, what are needs? Maybe someone needs braille for descriptions, maybe someone needs ASL, having an interpreter on site, whatever it is to have that awareness of making it more inclusive, both for the participating artists, but also for the public who’s coming in who they might need those options too, for accessibility. And I’d love to see that change for the better. Heidi: Yeah. You were describing the experience of a non-apparent disability so that there’s some stereotypical or not what comes to mind and heart when somebody hears disability, like what they imagine, but there’s so many disabilities that are non-apparent that it sounds like you’ve had some experience trying to navigate that part of inclusion for yourself. Karen: Yes. I think it can be a double-edged sword. Obviously none of us would wish to be more disabled, but certainly when we’re out in public, if we look on the outside, if we have a very invisible disability, I think it’s easy for people to not respond in ways that are very helpful. And so, one thing that I’ve noticed being presenting younger too, even though I’m 42 now, but often people think I’m younger than that, but regardless, I know I’m not a senior citizen and I’m not in a wheelchair. And so something as simple as getting groceries for me, especially, because I actually broke my back a few years ago and that only added to some of my limitations. It never healed to be quite the same again. And so I have a lot of in my back, and so going to the grocery store, if I can have the cashier help with the bagging, because that motion really is hard on my body and I’ve learned which cashiers at which stores will be helpful and which ones to avoid. And then which stores in general have a very good environment. So, for me, Healthy Living, I’ll just give them a nice little shout-out, because it’s like they’ve been kind of a godsend to me as a customer where they are across the board, everyone there has always treated me kindly and respectfully when I ask for help. There’s no weird attitude. They’re very respectful, they’re happy to help me. And when I broke my back, they even would bring my groceries to my car for me, which meant a lot. And I think that’s one thing that is so nice about Vermont being sort of that sort of smaller local, so that being a local place and being more community oriented as opposed to a larger non-local company. And so that’s something I’ve definitely faced though, is by not being as obviously disabled, sometimes there’s difficulty around that. Heidi: And I know you and I have talked in the past about some of those things and sort of the challenges of being an artist, but then also being a human with a disability that there’s some overlap for sure. And if we don’t mind switching or just ask, you sort of went there with a shout-out to Healthy Living that what are things that support your creativity and your thriving? What are the things that work well for you or that you have learned so you can work well with yourself in all of the different ways that you might show up whether they’re wanted or not? Karen: And are you asking from a disability standpoint or just in general as- Heidi: Say wherever you want, but what supports your creativity is the sort of question there. Yeah. Karen: Yeah. I mean, of all the things, and I know I’ve mentioned this to you before, but my favorite rock band is U2 and their music. And the few times I’ve gotten to see them in concert have been just … Well, especially going to see them in concert, it’s been such a blessing when that’s happened and I never feel as alive as I do in those moments. And there’s just something about the music, and I guess it’s because it is that creative energy. Those of us who are artists, it’s like whether it’s music or a painting, there’s a similar energy there. And I always do my artwork with music, and most often that means U2 music. So, I usually have U2 songs playing, and it’s almost like part of me because I’ve listened to them so much. And so there’s a flow to hearing it that’s different than if it was, say, listening to the radio, for example, because I know those songs so well and they bring me joy. And there’ve been times, even if I’m making say my cards, I make my own art prints and then I put them on card stock and make them into cards. And sometimes my body is just like, oh gosh, I am so exhausted and maybe my back is really hurting because I’ve been bending over. And there’s usually a certain point where, gosh, I’d rather be doing anything else because my body is just so done. And by putting on some U2 music usually helps me to keep going longer than I would otherwise. It’s a nice distraction and helps keep my mind off of some of the pain a little bit. And obviously it can only do that for so long still, but it does help. And another big inspiration for me, it is definitely my bunnies. They’re such loves and I feel like I really got through the last couple years, especially because of my bunnies. Heidi: Thank you so much for that, Karen. Just a couple more questions, and one is, what advice would you give to other artists with disabilities in Vermont? Karen: I think the biggest one I would give would be to become part of the community, if you will. And so for myself, that actually happened because of VSA, which now is called Inclusive Arts Vermont. So, having an exhibit that was centered around disabled artists, it just gives a different feel than when it’s in a broader exhibit, which I’ve also been part of. And those are amazing in their own ways, but there’s something to be said about being in the room with other people who can understand on a deeper level. And we sort of share similar experiences. And even though our individual stories might have specific differences, and we might have a different reason for being disabled or a different diagnosis, whatever it is, but there are common layers underneath all of that, which is really special. And that sense of community has been really, really powerful and wonderful in my life and something that I really treasure. And I just feel like there’s a support there that is unique to anything else. And some of the connections have actually turned into friendships for me too, which has been really quite special and unexpected. And so I think to find those avenues. And one thing that through the Pandemic was really helpful for me both personally, but also as a disabled artist, was when Inclusive Arts Vermont had a networking over Zoom. And we would meet once a month and we would share our projects and maybe share ideas of what we were hoping to do or brainstorming together. And one thing actually that came out of that for me with my art was with the Phoenix to display it without a frame, because another artist sort of mentioned that and having it feel free and not caged in with a frame. And so it was amazing even from that where we can sort of learn from each other and get inspired. And so I would really recommend for other disabled artists to try to find whatever that is, your community of people and to reach out. Heidi: Yeah. Thank you. I’ve heard so many artists talk about this and other artists in CYCLES, and there’s a part of art that’s individual and we need each other. And so that balance, and I was, because I was part of the networking that you were describing, the Phoenix, you brought that to the group and it was remembering that the suggestion to not have it be trapped with a frame. Yeah. Karen: And I love that suggestion because it was so true. It was really appropriate to have it feel free like that. And so that is how it’s displayed now is without a frame. Heidi: And thank you so much, Karen. Is there anything else you want to share with the audience before we wind down our conversation? It’s been so wonderful to be in dialogue with you about art and creativity and all of the things. What else do you want to share? Anything else? Karen:  Well, for me, it’s been pretty amazing just the timing of the CYCLES exhibit, because of course it traveled to different locations around the state of Vermont, but it started at the UVM Davis Center, and then it ended at UVM CDCI, and it’s there in that organization’s 50th anniversary this year. And for me, it’s my 20th anniversary of graduating from the University of Vermont. So, of all the pieces for it to be my Phoenix and get to have it at two different locations at UVM this year, I just felt like that timing of that in particular was really special. And it meant a lot to me, because I loved my time at UVM and to still have that connection to it in a way, and for it to be through such a special peace of mind with my art. I was glad that that could happen. Heidi: Well, thank you Karen, and thanks for sharing more details about and the intimacy of the process with your piece in CYCLES Phoenix, and your connection with others who’ve responded to it, and just sharing your beautiful, vulnerable, artistic, creative human self today with me and with audience. Appreciate that. Karen: Thank you so much, Heidi. It’s always a joy speaking with you. ---------------------------------------- You can see more of Karen’s artwork and photographs at natureheartstudio.com [https://www.natureheartstudio.com/].

25 de mar de 2025 - 56 min
episode Episode 32: Cosmo & Scarlett Duncan, with Catherine Armani-Munn artwork

Episode 32: Cosmo & 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 about jobs and job skills, Cosmo? Where was that? Cosmo: At Andy’s Dandy’s [https://andysdandysvt.com/]. Scarlett: What is Andy’s Dandy’s? Cosmo: In disability, and Andrew and his parents, his mom, they came up with it by themselves. [/blog/cdciresources/wp-content/uploads/sites/3/2025/02/Andy_s_Dandys_Baked_Dog_Treats_–_Handcrafted_in_Vermont_–_Shop_Now-1024x663.jpg]https://andysdandysvt.com/Andy’s Dandy’s is a dog biscuit company based in Richmond, Vermont, that offers training in employable skills to people with developmental disabilities. Scarlett: And it’s a business. What do they make? Cosmo: They make dog biscuits. Scarlett: Organic dog biscuits. Catherine: And where can you get one of these organic dog biscuits from Andy’s Dandy’s? Cosmo: Get them at the mall in South Burlington. Scarlett: At the Pet Food Warehouse. Cosmo: Pet Food Warehouse. Catherine: Wonderful. So what did you do when you worked there? Scarlett: Did you run through the stations? Cosmo: I ran through all the stations. At the end, I did the assessment. Scarlett: And what were you in the end? Say it. Cosmo: I was at the sales part. Scarlett: So they went through the stations from making the dough of cutting the cookies, of packing the cookies, labeling and bagging or whatever, and distributing. And some of the students were really good in the making of things and didn’t want to do anything else. And Cosmo, as you know, was bored quickly and wanted to do more. So they took him out in the sales department. Catherine: Oh, I bet you’re real good at sales, Cosmo. Scarlett: Well, he’ll sell a fridge to people who live in Alaska without any problems. And they suggested that he becomes a self-employed salesman for them, because they need a sales representative. Most of the students are young people that work there would not be able to do that. Catherine: You look very excited about this, Cosmo. That’s so great. Scarlett: Yes, it’s good, huh? Cosmo: Yes I am excited. Scarlett: And what’s the other job we are still working on? That Bill is trying to get for you. Cosmo: Internship at The Edge in South Burlington, Vermont [https://edgevt.com/]. Scarlett: And where at The Edge? Cosmo: Front desk. Catherine: So it sounds like, will you be able to work out at The Edge when you’re not working there? Scarlett: We go to the Y, right? Cosmo: We go to the Y. Catherine: I was going to say you go to the Y too. Cosmo: I always see you at the Y. Catherine: I love seeing you at the Y. It’s important to take care of ourselves, right? Stay healthy. Scarlett: Yeah, Cosmo’s just started to do weights too. He can do it now without being irresponsible. Catherine: So what are some other things you like to do for fun, Cosmo? Cosmo: For fun? Scarlett: Yeah, we wrote down some other the things, because being excited. We forget things very quickly. So what do you have? Cosmo: I have a band. Scarlett: You have your own band? Catherine: What’s the name of your band? Cosmo: Yeah. Professors of Mystery. [https://theprofessorsofmystery.bandcamp.com/album/sad-emotions] I am a frontman. I play the trombone and my mom on the drums, my dad on the guitar. Scarlett: And the bass. Sad Emotions by The Professors Of Mystery [https://theprofessorsofmystery.bandcamp.com/album/sad-emotions] Catherine: Do you ever play anywhere in Burlington? Cosmo: We did. I’m a appearance on stage. Scarlett: And then Radio Be [https://www.radiobean.com/]an. Cosmo: Radio Bean. Catherine: I was there. I’m a number one fan. Scarlett: Oh, we played there many times, right? Cosmo: Yes. Catherine: Yeah. So Cosmo, do you think you’ll continue playing in your band once you finish school this year? Cosmo: Yeah, we having a course tour. Scarlett: They got to have a tour. Catherine: I love it. Scarlett: A Vermont tour. Cosmo: I’m gonna stop by at your home. Catherine: An outside concert, right outside. So you have your band. What are some other things you like to do for fun? Scarlett: Can I say that? Cosmo: Dragon boat. And I did it through Champlain Community Services. Scarlett: Where do we meet Ms. Armani? Cosmo: When we run together. Catherine: I love running, especially with you. You keep me going. Scarlett: He is going on the treadmill now. He’s going to be faster this year. Catherine: And are you going to run the Burlington City Marathon this year in 2025? Cosmo: Yes I am. Scarlett: In everything? Cosmo: Yes. With my friend Luca and Chris Brennan. Scarlett: But first you have to run which race? Cosmo: The EDD 5K. [https://runsignup.com/Race/VT/Essex/DreamBig5kWalkRunRoll] Catherine: Yeah. It’s all part of the training. Cosmo: My friend has epilepsy, severe seizures. Scarlett: Don’t have to say his name, but you help him, right? Running. Cosmo: I do. Catherine: Yeah. Well it sounds like you’re busy and involved with lots of great things in the community, Cosmo. Cosmo: Yes. Catherine: Are there other places you like to go in Vermont that are outside of Burlington? Cosmo: Yes, I do. Catherine: Where? Cosmo: I like to go to St. Albans. And Leddy Beach. Scarlett: Leddy Beach is still Burlington. Where do we like to go? Where we went to the cabin. Cosmo: To the cabin in Florence and Vermont. Scarlett: To go what? Cosmo: To go fishing. Catherine: Oh, so you like fishing too. So it sounds like you are involved with lots of fun things. Cosmo: Yes, we do. Scarlett: And best of all, you like what? Cosmo: I like to do swimming. Scarlett: Yes. Catherine: So, do you like to swim in the lake or do you like to go to different water spots In Vermont? Cosmo: I go to the Y and… Scarlett: The lake. Cosmo: And the lake. Scarlett: And we went to… Cosmo: I went to St. Albans Park Pool. Scarlett: And we went to the waterfall. Remember that? That was fun. Catherine: Ooh, lots of beautiful places in our state of Vermont. Right? Cosmo: Yeah. And my friends’ grandparents house has a pool outside. Scarlett: Yeah, that’s outside. It sounds really great. So I think he’s very busy, but it’s not organized the way I wish it was. It only works if I do it. And that’s the part that I think needs to be worked on. And I think when they grow older also there’s no third place. You what the third place is yes, right? So there’s home at work and then there’s a third place. Catherine: Right. Scarlett: Where you could meet others where you belong. Like, you would go to a bar or whatever. Not so much for Cosmo, but for a lot of his friends, that’s not an option for many reasons, but they need third places where they can go and feel they belong and they can have fun and hang out. And there’s nothing, really nothing like that in all of Chittenden County, not only in Burlington, which is really, really sad for them. We try to facilitate things, but it’s still not the same. Catherine: Still. Yeah, I know. So it’s like what are we hoping for in the future of Vermont and how can we create spaces where everyone can access and you’re able to hang out with your friends and yeah. It’s a lot to think about. Scarlett: One place like Radio Bean, they have an alcohol-free time from 7:00 to 9:00, where there is no alcohol served. So whether they, for safety reasons, you can go there, if you don’t feel safe in the environment and also when you are not of age yet you can still listen to music and do things. And I think that’s a very good example that with just a little bit of adaptation of your place, you can make it more accessible for people. Not only with disability, but for everyone. I think that is just small things like that can mean a lot. Cosmo: Yeah, they do. Scarlett: (Don’t make so much noise with the chair). Cosmo: I’m doing long boat rowing. Scarlett: What was the race you raced and what did you win? Cosmo: I almost got first place. Catherine: That’s amazing. That’s a lot of hard work and dedication to get first place like that. Cosmo: Yeah. And my group I was in with, Eunice. Scarlett: You both. You are just great. You are great rowers, both of you. Catherine: So do you think you’ll keep doing that after this year? Cosmo: I do. Unfortunately my coach [inaudible 00:24:09] flew to Ireland. Catherine: Wow. Scarlett: That’s kind of why we picked this. It was a high school activity, but not through the high school. It’s through the Lake and Maritime Museum in Vergennes. But we picked it, because without any scene, they have adult rowing in the same place just an hour later. So when he’s not at school, he can just keep doing this without losing activities that he had before. And I think the continuity of these things is not always easy to achieve at the high school. And I’m really happy that we have a few things that just keep going. Catherine: Yeah, exactly. Your band, you’re rowing, running. And Cosmo, I think you said in the beginning, is your goal to live all on your own and have an apartment? Cosmo: Yes. That’s my goal. Catherine: And I think you’ve been using the bus, right? To get around in the community? Cosmo: Yes. Scarlett: What do they call you now? The GMT. Cosmo: GMT. Scarlett: Specialist. Cosmo: Specialist. Catherine: Wow. Scarlett: If you need to know how to get wherever you want to go just ask Cosmo. He tells you- Catherine: Exactly. You’re very good. Cosmo, did that take a lot of practice, learning how to navigate the bus system or how did you learn to do that? Scarlett: What did you do at, Cosmo? At the beginning? Cosmo: In the beginning we didn’t have a car. Scarlett: Yeah, we did. Cosmo: And we wanted to co-exist there. Scarlett: But at the beginning, Cosmo, how did you learn to do the bus? We drove you to the bus station. You would take the bus. We would drive with the car after the bus and make sure you got off where you had to get off and change when you had to change. And slowly, but surely you learn how to do it. And now sometimes there’s certain places where I don’t want him to go. So we have to find ways to avoid those places, like the transit station. Catherine: Yeah, right. Scarlett: But otherwise he’s very independent and he knows how to get to and where to go. And whether they go on the weekend or whether they don’t. I hope we keep this system. It’s not the perfect public transport system, but it’s good enough to get around in the closer area. And I think that’s great. Catherine: Exactly. And especially for your job too, right Cosmo? Will you have to use the bus system to be able to go to work and do your job as a salesperson? Cosmo: Yes, I am. I am taking the bus. Into Winooski, and then you come and get me. It’s a long walk from Winooski High School to Handy Dandy’s. Scarlett: That’s a long walk, yeah, but you could go to Costco and walk from there. That’s not so far. Cosmo: No, that’s not that far. Scarlett: Did I ever regret moving from rural Vermont to urban Vermont? No, I did not. I mean, I personally did the first years, because I didn’t have any friends and we didn’t have a nice big house, we had a very small house. But did I ever regret doing so? No. Cosmo has so many possibilities here and people open possibilities for him. Like the relay run, there was nothing like that where we lived before. And I think that is 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 that live in the boondocks and if the person cannot have a driver license, which a lot of people with developmental disabilities won’t be able to have, then they’re stuck. Catherine: Yeah. Is there a piece of advice you’d like to give people who are trying to access different types of services in Vermont? Cosmo: We do message. Catherine: I would love to hear that. Cosmo: My message is, be safe with your money. Scarlett: Be safe with your money and what is the other? Cosmo: Speak up for yourself. Catherine: Most importantly. And you do such a good job at that. Scarlett: And I think that is sad. It’s sad that everything you might need for your young child or the adult person with a disability may need, requires constant advocacy and constantly speaking up. You don’t get what you need if you don’t. And I think for a population that is not always able to do so, and do so appropriately, that just not acceptable. Cosmo: Yes we are. Catherine: Is there one thing you wish you knew earlier about accessing any of these services? Scarlett: Yeah, I saw the question before and I thought long about it. And I think there’s a lot of things I just found out that I have a right, in many things I knew, but in many things I didn’t. And I only now find out. If I had known that before I would’ve approached it differently. It’s a jungle of administrative paperwork that you just don’t easily see through what it all means. I still don’t. And yeah, I’m not very happy with that. It should be in plain language so that my son, who is an adult, also can do this. Apply for services, can make choices. He can’t, because there’s no way you can read these documents. Even I can barely understand what they’re about. So I’m very upset with this regulations for adult people with intellectual developmental disability, because they cannot make their choices that they could if they could get the information. So they always have to rely on somebody else. And that means they might not always get the information that they really want. Catherine: Right. Even maybe, Cosmo, if you had to go to the doctor, being able to call your doctor’s office and make an appointment or your eye doctor or the dentist. Sometimes. Cosmo: [inaudible] Catherine: Look at that. Scarlett: He’s got the cleanest teeth in all of Vermont. Catherine: Cleanest teeth. Scarlett: Yes. Cosmo: And my mom was laughing. She was. Scarlett: We were very lucky with his medical care since we are in Burlington. I have to say, lucky, it’s not necessary for everyone, but we were lucky. Cosmo: Mama was laughing. I love the dentist. Scarlett: Cosmo, one of his favorite places in this world is going to the dentist. And to give blood is actually also one of his favorite. Catherine: Wow. We all have our favorite things. Cosmo: Yeah. And I’m all quiet. Scarlett: No, it makes me laugh, because you just so… Catherine: We’re laugh-crying. Scarlett: You’re just so unique in everything who you are, that is just makes me happy. Catherine: It’s a beautiful thing. Scarlett: Yeah, it’s a very beautiful thing. Cosmo: Yes, we are. Scarlett: And of course he invites his dentist to every concert and they come. Cosmo: I do. Scarlett: Hygienist and doctor and helper. Cosmo: All come, they came. For my birthday I thought. They all came. Catherine: Yeah. And I think that just shows, Cosmo, how you do such a nice job advocating for yourself and inviting people in your community into your life. And that’s why you have so many great friends too. It’s a really beautiful thing. Scarlett: Yeah. And I think one advice that connects to exactly that, that I would give parents or caretakers or guardians is, assume that the people want to do the right thing and they want to help. Don’t come there with negative feeling, “You have to do this.” It’s not going to help. I have learned to be patient and always kind and trying to understand the position they they’re in, but they’re overworked or that they just don’t have the knowledge. We all don’t know everything. We cannot. Catherine: Yeah, we’re all learning every day. Scarlett: I think it’s a long journey if you have a child with a disability and if you don’t take your time being kind and patient with the people who support your child, it will not be a good journey. Not for you, not for the child and not for the people who try their best. So am I asking always the impossible? Yes. But if that is not possible, I try to understand why and support the people to do their level best. Most of the times it’s not the people that do the support work that are to blame. Most of the times it’s other dimensions that are to blame. Catherine: Right. It’s a journey. Scarlett: It’s a journey. Yes, it is. Cosmo: It is. Catherine: Yeah. Scarlett: Oh yeah. And maybe your listeners and viewers want to know what was the biggest thing you have done up to now in your life, Cosmo? What did you do? Cosmo: It is done. I give my commencement speech. Catherine: That’s quite the honor to be asked to do that. Cosmo: Yes. And that means I got some cards in the mail. Scarlett: Congratulating you. Cosmo: [to Scarlett] That made you cry. Scarlett: People wrote cards to him how great of a job he did and how they were impressed and they didn’t think maybe he could do it, but he did it. Catherine: But you did it. Cosmo: I did. If you hear it, think you might cry. Catherine: I did. I heard it and I did. Scarlett: I did too. Catherine: They’re tears of joy, because you have accomplished a lot in your life, Cosmo. And you always speak up for yourself. Cosmo: Same thing to my neighbors. They heard it. They did. Scarlett:Yeah. I think what is really tricky in this whole journey is that people do not assume ability. They just don’t assume. So we go to the registration at the hospital. And he knows all these facts that are necessary to register. And they ask him and he answers and they look at me. They do not assume that he could understand. Catherine: Do you ever turn your back? Scarlett: No. I say the one sentence. I say, look, I’m just a Uber driver. Don’t ask me. I don’t know. Catherine: Yeah, I’m just the driver. Scarlett: I’m the Uber driver, I’m just driving. And now Cosmo has this and that might be interested to some parents. This is called a pacing board. [/blog/cdciresources/wp-content/uploads/sites/3/2025/02/pacing-board-shot.jpg]Scarlett, left, holds up Cosmo’s pacing board, a speech therapy tool used to slow down a person’s speaking rate. So when you have difficulties with your speech, and you might have seen Cosmo doing this during the podcast, you would say, “My-name-is-Cosmo.” So he speaks slowly and it’s reminding him of every language. And it was typical to find a way. And then I had this idea that we put it- Catherine: I was going to say, something that you usually have with you is your phone. Right? So that’s a nice tool to help you when you’re out in the community. Do you think it’s helpful? Scarlett: He puts the phone down and say, “Ask me.” Catherine: So it sounds like you found some good strategies to help you, Cosmo? Cosmo: Yes, I knew. And something about me and I was a peer mentor at [Champlain Community Services] and they run this through mid-November. Scarlett: You’re a great peer mentor. Cosmo: Yeah. Catherine: Yeah. Cosmo: My– I was– I’m on the TV show with The Joyful Friends. I am. Scarlett: And maybe an advice, because I said so easily, people don’t assume abilities. It is very quickly that we as a parent or caregiver fall into that trap and take over in that moment. Not because we don’t assume our child or our grownup can’t do it, but because the situation is demanding action. Catherine: Yeah, in the moment. Scarlett: Four years ago I stopped. So whatever they cannot understand, I want them to ask. I’m not helping and I’m not facilitating that anymore. Is that really hard for me? Yeah. Catherine: Yes. It must be, as a parent. Scarlett: I want to say “Hey this is Cosmo and he–” I help him in this situation, because he knows so much and you wouldn’t always know that this is the time you could say this, but in those situations he doesn’t need help. And the biggest thing we have to learn as parents with a child who has a disability like this is not to help too much. We help too much, we don’t help. We hinder them. And that is a very tough lesson and it’s still tough. Catherine: Right. Continues, yeah. Scarlett: You are not doing them good or a favor or you’re not being kind and loving if you over help them all the time. Something’s a hard lesson to learn. No? Cosmo: No, I have a surprise for you. Catherine: You do? Cosmo: Yeah. Catherine: What is your surprise? Cosmo: I’m on this TV show. Catherine: You’re on a TV show? Cosmo: I am. Catherine: Do you want to tell the listeners a little bit about that? Cosmo: Yes, I do. It’s at the very beginning. My mom, she drove me to CCS and it’s called Champlain Community Services. And I’m a peer mentor to  people. Scarlett: But how did you get to the TV show? I think that’s what Ms. Armani wanted to ask you. Cosmo: And my TV show is called The Joyful Friends. Scarlett: The Joyful Friends. But where did you do the TV show? Cosmo: Town Meeting TV. Scarlett: Town Meeting TV. Catherine: Well, today you’ve talked about so many great things that you’re doing and doing in the community and you’re involved in and it just shows that life is way more than disability, right? Cosmo: Yes. Catherine: Thank you so much for sharing your story with us. Cosmo: You’re welcome. Scarlett: Are you happy too? Cosmo: I am. I really miss Ms. Armani. Catherine: I miss you so much. Scarlett: We all miss her. Cosmo: Yes. Please come to my school for a visit. Catherine: I would love to. Cosmo: It would make me happy. Catherine: Do you have anything else you would like to share? Cosmo: No, we’re not. Scarlett: I have a question, Cosmo. Cosmo: What’s the question. Scarlett: What do you think is the most important for you living in Vermont and in Burlington? What is the most important for you there? What city do you like best? Cosmo: I like best is to being a community where I belong. Scarlett: That was a good answer. Cosmo: Yeah. Catherine: And thank you for being on Green Mountain Disability Stories, because this is exactly what this show is about, is featuring stories told by Vermonters with disabilities and all your experiences and your opinions. And so thank you so much. Cosmo: You’re welcome. Thanks mom. https://youtu.be/mBeypiGuiPA?si=MlMd8l_iLI1RtrHF

10 de feb de 2025 - 46 h 0 min
episode Episode 31: Kate Adams & Winnie Looby artwork

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 [https://cdci.w3.uvm.edu/blog/cdciresources/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? A large photograph of a stunning sunrise over marshes hangs next to an information window, at which sits a college-aged worker. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/11/kate-adams-piece-with-student-worker-1024x768.jpg] 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? A pale-skinned Indigenous older woman with gray hair pulled back in a bun rests a hand on a large gray wall plaque. Picked out in gold letters on the plaque: David. W. Howe Memorial Library. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/11/kate-adams-howe-library-1024x773.jpg] 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 finally just came to a point of saying, “I am not going to get my certification with a group that is going to use these words.” And I know they’re good intentioned because they’re finally getting some of these people connected with horses in wonderful, wonderful ways, but I don’t want to be associated with that word. So I’m kind of more independent on my own. And so that’s how, I guess that’s more than you needed for an answer to your first question. Winnie: I think you touched on a lot of the ones that were coming up actually. Kate: Yeah, stories interweave. Winnie: Yeah, they do, right? It’s kind of hard not to. For it to be an authentic representation of yourself, you have to include everything. Kate: And those of us now, I call myself ADH brilliant. And then I used to say with differences. But now what I say is data, delivery, dilemma, because it’s real. It’s real. Thank God for my new to me, three years with me, wonderful healthy husband. And he’s good with that kind of stuff so he can make sure my checkbook is in order. So we have a partnership where we each could bring the skills and gifts that we give, so I could chuckle about my dilemmas. And we call to find, where did I lay down the cell phone? What piles of papers is it underneath? Or was I cleaning the horse stalled, and it fell out in the dirt? And that is why we have this little gold thing because you don’t know how many cell phones I found years later out in the dirt of the horse barn. So it’s like learning what strategies I need to supplement the things that just don’t come automatically to my brain. And now, the new word is neurodivergent. I’m like, okay. So at least progress is being made in people’s awareness. Grateful, grateful, grateful. And so to become a part of this counts this inclusive… See, even remembering the words I have to stop at the inclusive arts… No, it’s Inclusive Arts Vermont [http://inclusiveartsvermont.org]. It’s been such a blessing for me, but not only for being able to share my art and my story, but meeting other people and coming to understand some of their struggles, and how they’ve been impacted on the limits in the culture around us who aren’t aware at these exhibits, that you put the names down at the level where someone that’s in a wheelchair can read them. People that aren’t aware don’t think of these things. And then Heidi needs visual. And I have to remember, if I send her an image, she’s going to have to put it on a special screen to be able to see more of it. And so I’m more careful what I send to share with her, like a sunrise in my saying a brief description that she can enjoy that. And for others, I met at the exhibit, I’d met her through art groups, Inclusive Arts Council, but she has worked there. It’s beautiful, stunning piece of work. And she has Lyme disease effects. So the lack of physical strength, the limits of what she could do physically, and that she has to ask people to come and help her move the couch in her house. Or that she can’t drive down to the exhibit, she has to get a ride. And then someone with cerebral palsy who is an artist. There’s this amazing creative brain. Someone will take him out, and then his eye sees things and has the adaptive camera stuff so that he could take images that share them. And the most important part is community. Caring, compassionate, community, where we’re willing to see and listen to each other, and celebrate our strengths so that we don’t feel like we’re always just seen through this lens of limited, which is the disabilities word and all of its connotations. Winnie: Right, right, right. Nice. Yeah. Well, I teach about disability culture, and I’ve always hoped that we could kind of speak more about disabled identity and what does that mean. And how we use our language, how each person has a choice as to what they want to call themselves or not. Or even that, you don’t have to necessarily have a label to get what you need. Right? I have students- Kate: That’s an interesting thought. Winnie: Yeah. Kate: Say more. Winnie: Making things universally accessible to folks. If you thought ahead about challenges folks might have accessing something, thinking about that ahead of time and making that, it’s not even accommodation. It’s just building it into what you want to do, so then someone can just come in and feel welcomed and included, and not have to ask accommodations or this or that, because that’s all loaded with a lot of internalized ableism. I think if we can move past, I think… Well, I talk about disability more as our environment is disabling. It’s not us as people. If the environment was for everybody, then we wouldn’t have that challenge. Right? Kate: But the exhibits and what work they’ve done, and bringing them to different galleries. and I’ve tried to go to several of the receptions because I could best represent myself in person rather than just what’s on the wall or just what I’ve written. And lots of times, people don’t even bother to read the stuff you’ve written. But at one of the galleries, it helped them realize we don’t have an accessibility parking spot out in front of the gallery. So if someone’s coming with a wheelchair, with wheels to roll with, but they have to park way down there. So that brought awareness to those gallery folks. And when I was at the State House, the man was… And see, I don’t remember names. That’s part of my blah, blah, blah. I am brilliant. But the detailed data, I don’t remember names, dates. I’m more like visual. But he spoke and he felt it was eye-opening for him too, because at the State House, they have school groups. Other groups come. And with all the art, they say, “Don’t touch, don’t touch, don’t touch.” And as curators, we know we don’t want salty sweat on the oil painting. But to be able to have pieces there that people could touch was like, well. And that was one of the reactions last year at the Davis Center. The students at the student offices said, “Wow, we could, think we’re supposed to tell people don’t touch.” Well, no, no, you can touch. We want you to touch. But I worked in corrections. When I got out of the first marriage, I was for a job. I’d gotten my degree in education. I got my master’s in curriculum development. I love teaching. But it was hard to find a job. So I have my daughter who I’m trying to protect. That’s another whole long story. And I did. I want to say finally, I did succeed in achieving that her visitations with him were only supervised. And I got her through therapy by going to therapy with her, and me being like the mother mare that went through the thickets with her checking out, “Well mom, are you really safe? Are you going to continue to protect me?” So after a year of that, then she said, “Okay mom, I don’t need you here anymore. I’m continuing this therapist on my own. Okay. So she did eventually hold him to account in her own way. Okay? So she healed, and she and I, and those who helped us helped break that chain of the generational cycle. And it’s a huge, huge loss to me to lose her presence here. But I got to go to a celebration of her life that was given by the people that worked with her at a mental health agency who wanted to honor her. And I got to hear as a mother, because she worked with families with children with differences, and she advocated. And so I got to hear those stories that I never heard about how she used what she’d been given to help so many others. And so I’m very grateful. And so I hope that whatever I continue to do will be continuing to honor her and others with differences, but who have a desire, who have within them a wonderful soul, wonderful spirit. And our mental, and thinking, and physical may look different than the traditional, but we’re alive. There’s too much that’s still wondrous about us. And I had a young man whose grandfather brought him to my horse program a number of years ago, and I knew he was ADH. They didn’t have to tell me. And he told me how difficult it been for him in school and family moving. And it was, I just did my horse connection with him with Jem. And then they asked to come back again later. And this time the parents were going to be with him. And the grandmother when she called to make the appointment said, “That’s the first time I’ve seen that boy smile was when he came back from your farm.” And so he came again. So he has a chance to be with my grandmother Mary Jem, whose now 32-year-old daughter, my wonderful stallion I’m speaking of. So he gets to do the connecting, the grooming, the understanding about safety, horse communication, connection. And he’s in front of the barn, and he gets up on Jem, and I say, and I’m thinking, “I’m using this as a teaching moment for the other adults that are around me.” I said, “You’re on one of my ADH horses.” He started lowering his head, and in shame, he whispered, “I’m one of those.” And I said, “Yeah, give me a high five.” That startled him. And he put his head up, “High five, because I’m one of those too. And I want to tell you what I know about you, because I’ve learned it about me and this horse. We are brilliant. We are brilliant, and we’re curious, and we have a lot of energy which other people, and even we don’t always know what to do with. You’re also very intuitive because look how good. You listened so well to me when I told you about watching Jem’s communication to you and how you treated her so respectfully. And so you’re intuitive. And yeah, you get bored easily, and you could get frustrated when people keep telling you to do something a certain way, and you either can’t do it, or it’s that you’ve already learned it, and would you stop boring me by repeating the same old thing?” And I said, “But you do get distracted, and it is a dilemma, especially for those around you.” I said, “But when there’s something that’s very important to you, you will focus and you’ll persist long after other folks would’ve quit.” There’s a quote that says, “A mighty oak grew from a nut who held her ground.” And that’s why I still do what I’m doing, even when it may not make sense to other folks around me. And there’s people that say, “Why don’t you go out and get a job where you could really make some money? Why do you do it this way?” And I’m like, I’ve had to… My beginning reaction is to listen to them. Oh God, have I messed up again? And sometimes there’s a struggle in the journey, and my own thought process is to say, wait a minute, unstyle this, sort it out. No, this is my choice. This is what I want to be doing. This is what I’m gifted at. And what a joy it is when that young man to go for a trail ride with me. Because I say, “Oh, don’t worry. We’re not going to go around in circles in a ring. I’m going to be leading you through the woods,” because Jem doesn’t want to go around and around circles in a ring either. So I feel my art is storytelling. My images, my words, it’s telling stories of my story, my family, my horses, my birds, my dog, other people’s stories. And if telling my and sharing my story helps them, like I said, I like what the original readings of words. And they wanted a visual description for my piece. And then they want you to write if you want to, they’re great about giving you permission. Yes, you can do it. Or no, you don’t have to do it, about what this has to do with the word cycles. And so I looked up the word cycles and I actually ended up writing a poem about it. So that was my expression that goes with the art. But that’s why for me, images, it’s words, pictures, stories. And sometimes they can help us learn or connect in a way that we just, either the way we are created we don’t get, or trauma can twang some part of our being that we’re in numbness or whichever. My primary reaction was fear, hiding, compliance. And so for me now, learning that when I’m angry, there may be just causes for anger, but how do I speak the truth in love? And in a way that could bring goodness. And I still have to ask John sometimes. “Okay, you better read this, John, before I send it.” So you’ve been on some of this journey yourself then, huh? Whatever the way we’re created, whatever our difference is. Winnie: Yeah, yeah, definitely. I asked if I could do the interviews for CYCLES, because I have done art first for all of this with CDCI. I went to art school for a bit. I still do some art on my own. And the way you talk about your life and your stories being intertwined with that expression, but then also wanting it to speak to other people, I still identify with all of that. You talk about it that way. It’s really nice. I thought, my tangent was- Kate: Do you have those sometimes too? Winnie: My students get really frustrated with me I’m sure. Kate: Well, it’s good for them to learn to adapt. And I want to say I’m grateful that there’s more awareness of teaching at UVM than when I went to school there. Okay? There was not much of any of this then. Winnie: I teach in the education department. And so I think students have told us that we’re the most open-minded department in a lot of ways, the way we understand people a little better than other departments might. But in my dissertation, I did a little bit of research about, I found these philosophers. What do they call them? Deleuze and Guattari, French philosophers that wrote this cool thing. And I didn’t read the whole thing. I just kind of read it like poetry. And they talked about rhizomes, like how there’s plants that grow in these tangles and things. So you might not understand why it’s so tangled up and what’s going on there. But for the plant, it makes sense. And I thought, “Yeah, that’s what it is. That’s what it is.” So my brain’s going here and going there, and it’s making all those connections. To me, it makes perfect sense. Kate: And I’m learning so much more. My minor was biology because I was just wanting to learn, and animal science. And I took any UVM horse course. As a matter of fact, I want to say my roommate and I actually started the UVM Horse Club back in however many years ago that was, so that we could bring our horses to the dairy farm over on Spear Street because they had these box stalls for the UVM horse management course, and they only used them one month out of two years. So we said, “We’ll start a UVM Horse Club and we’ll make a proposal that we could bring horses.” And so she and I used to gallop our horses on the corn fields there, and now look what it’s grown to in UVM intercollegiate team, but beyond. So we don’t even know sometimes the seeds we plant, and we may not see them or see the fruit of it. Maybe for a long time, we may not even ever see the fruit of it in this earth life. But it is encouragement to me when I realized, “Wow, look what’s come from that. Wow.” I like your tangent to the rhizomes because we’re finally realizing that trees and other plants do, they have all these interconnections. And when one tree is cut down, the other trees near it will still reach out. And you’ll notice that I have them out here because this was 10 acres. This is carved out of a piece of land that was logged and left in trash. Okay? But there’s big stumps. And sometimes, well right outside my cabin, I finally had to cut down the oak tree, even though I’d been trying to protect it, because my horses are like Vermont range horses. They will eat. They don’t even want to just be in pastures that are just the plain old green grass. So we finally, it had died. The tree part had died, so we cut it down. But there’s all kinds of saplings still coming up from those roots. And so now I’m protecting them. I said, “Okay, we got to put a rail over here so hawk can’t reach over and eat those.” But see, I feel that’s more of how we’re intended to be for each other too. Roots reaching out to support each other. Winnie: Yeah, absolutely. Absolutely. And you never know what connections, you were saying what the after effect might be. So in the doing, it’s very healing and nourishing. But also, there’s these great outcomes that you might never see. But it’s lovely to know that they could be there, I suppose. Kate: Yeah. So I just keep saying let me learn. And the Canada geese have been very special to me because as I was trying to find my journey from what I’d been raised in, in church community, I finally found more my home with the early Celtic Christians. And that whole group of people had to go into hiding because when the Roman Catholic church and whoever was the king at the time decided they were the ones they were going to yield to that, the Celtic Christians went into hiding or disappeared. And there were a few people that went to Scotland, and researched, and tried to regain, because what I found resonating for me was very much nature creation. Their prayers are so beautiful. They have prayers for each thing, for someone coming, for someone leaving, for lighting, the fire in the evening. The whole interrelated connectedness and a spiritual dimension that for me felt more authentic. And then when I learned more, I was always interested of indigenous ways, and especially the Plains Indians, because of course, the horse connection. So I was from a large family, my dad a mechanic. So not a huge amount of money, but wanted a horse. I did succeed eventually after showing that I could be responsible to care for my five younger brothers, sisters, kittens. Rooster chicks with curvy, earning money wherever I could, [inaudible 00:36:38], babysit. I was able to buy my horse when I was 14 years old. And two of the horses I have out here are her grandchildren. The geese taught me this is the mothering part of God creator, and you are important as a woman, and you are also created in God’s image. And you have seen these geese and how they interact each with their role, and how they help each other with their role, and how they teach the young ones. So a year ago on this pond, so now I’m back to my land in Ascutney at the base of Mount Ascutney, on a pond that’s next to me, next door to me, base of the mountain. I noticed last year a goose was sitting on the rock in the pond and made her nest. And I realized that she was the first generation that the geese females stay with their parents. The males go off. They’re looking for a mate. And so they’re kind of learning from their parents. And then the next season is when they start brooding. And so I got to witness her first year of building a nest and brooding. And let me tell you, those parents didn’t always do it very well. And they lost some goslings. But they learned, and they had their whole family around it because they had that family and then aunts and uncles. On my small pond out here in the back of my cabin, I ended up with four pairs of Canada geese with their goslings all coming to visit, and brood, and eat in my pastures. And she is over there now. She’s on five eggs. And even just watching how she builds the nest, it’s like I said to John, it’s like the image of the top of a volcano. She has drawn in the weeds. She’s drawn in green grass. She’s drawn in and built it up so there’s a base of warmth underneath, and there’s a wall to protect, to keep her warmth in. And that when they start to hatch, they don’t just crawl out and swim away or whatever they would do. And this morning she was adding her down, her fluff to them. And so there’s always more to learn and enjoy if we’re willing to look, and be aware, and listen, and be open. Winnie: In the last year, I’m a city kid originally. So last summer I decided I was going to learn the names of plants, like trees and flowers and the different birds, maps that would kind of record the song. Kate: Oh, yeah. Good for you. So have you learned some new plants? Winnie: I’m not so great with the plants, the birds. Kate: Oh, great. Winnie: I remember now what they sound like if I don’t have my phone out right away. That’s really cool. I feel very… Yeah, it’s really a nice part of the day. I had a dog also with a very, what do you call it? We were very connected, I think very [inaudible 00:40:03] relationship. The kids would go, “That’s your dog mom.” And he passed away last month, but part of my favorite part of the day was to take him for an early morning walk, and listen for birds, and take pictures of plants. And he would pose for pictures if he saw me. So I have a bunch of him posing in front of plants and things like that. Kate: So do you have some of those images? Winnie: I do, yeah. I’ve saved a bunch on my phone. Kate: I find that even with the images of Valerie, it just does, it can. Maybe doesn’t always, but it does. It brings back that memory, that closeness. And I realized eventually, I didn’t realize it I don’t think until after she left her earth life, that there was a spiritual connection too that I didn’t realize. It was like the creator was saying, “Thank you that you are stopping to see me in this image of this goose. I want to acknowledge you for what you did as a mother to protect your gosling.” And when you send her these images, it’s like you’re sending her a reminder of me, but she may not understand all of what, I don’t understand all of what she was enduring. Had to endure. But there are blessings when we make the effort for connections, and for me to realize that the images. And it’s also been true in the cancer right group that I’ve been in, the poems we write, and we’re sharing with each other how we’re seeing many of these, in this case, mostly women, but some men too. We’re dealing with the illnesses and the medical and the chemo. But when we’re together as the right group, we have a wonderful facilitator. And the share the prompts, and then we have time to write, and then we share with each other. It’s like we’re coming up out of the mud mire. We know we’re not just seen as somebody stuck down there in the mud mire. We’re seeing in our beauty, and our creativity, and the words, and expressions, and stories that people share. They’re very precious. So maybe next year you’ll be exhibiting one of these exhibits. Winnie: Yeah. A few years ago I did one, what was it called? The Flourish show that was at the Flynn. I made, what was it? It was kind of like a shadow box with medicine bottles and stuff like that in it. Yeah, it was fun. Kate: That’s intriguing too. Yeah, taking a variety of things. And were they of significance to you, or was it just your curiosity on putting the different types of objects together? Winnie: Both of those things, actually. Yeah. Because I like to make tinctures for my health stuff. And so I was learning about doing that at the time. And so I’d saved all this pretty little brown bottles, and [inaudible 00:43:35] up with string, and just made them pretty into a little box together. I put different smelling teas in little boxes inside of it and all that. I don’t know why I even made it, but it’s one of my favorite things that I’ve made before. Definitely. Kate: Have you seen my piece? It’s in the exhibit. If you haven’t, I would encourage you to do what I’m still learning how to do, to be able to access them so I can hear. Someone reads what we wrote to be with it, because it does explain about how this piece of art connects me with my daughter and the creator. And I told you about the geese. Ironically, that morning, so I’m waiting to go to be with her, and I’ve been told this is probably… I’ve been staying with her for six weeks. She kept defying and living past all the expectations. So she was just a loving, determined woman that was going to be sure she left things as prepared as best she could for her family, her children, and me I’m sure too. She gave me these earrings. And I was told, she’d worn them for decades because they’d been given to her by my youngest sister. And so there’s different things that could be remembrances. But I actually was sleeping in the front of my pickup that night, because I value everything about how many bales of hay does it cost. And a room was like $150. Well, that feeds Jem for a month, so we ain’t doing that. So I’m sleeping in my truck. It starts to get cold. I said, “Okay, I’m going to drive back up closer to Val’s house.” And I drove by her house and I’m like, “Okay, I’m not going to go. It’s just been there with her and I’m not going to disturb them.” I’m going to go to Belvidere Pond. It’s just half a mile from her house. And so as I approach it, and because I always am looking for sunrises, a lot of my sunrises I pick at the edge of my farm are through the woods. I could see the sun coming up. So that’s my morning walk is out there, and taking images, and sending them to Val or to others. So I see the sun coming up over. So I head for the pond. And then the sun’s just coming over, and there’s the mist of the valleys in the hills around the pond, and they’re glowing these different colors of pink, and purple, and blue. And then it’s reflected on the water. And then I drive up further to the pull-off, and I get out and I have my native flute and I have Psalm 91. Of course I’m going to speak about, “She will hold you.” Because I know she knows she was very much loved by me. So it was like, “You’re going to be entering a new birth canal and giving birth to you was very difficult.” And she was born with a broken collarbone, so it was traumatic birth. But I said, “And you’re entering a new birth tunnel now and just know God is with you and my love is with you.” And so I played on my native flute, and I did some wailing, which echoed from the hills. But guess who came? A pair of Canada geese came, and flew across, and landed over there long ways from me because they don’t know me, so they’re still wary. So there’s this lady singing and making lots of noises. We as a family of us two-leggeds and us four-leggeds, the dog four-leggeds, the horse four-leggeds, the bird two-winged. We’re all a part of the life journey and the last day journey. So I hold to those memories and treasure them. And some of the things I read about those of us grieving, that there’s no linear or rules, regulations that work. Forget the things people that don’t understand better tell you. And the depth of which you’ve loved means the grieving can be very intense at times. And it’s like you learn to grow and move through it, even though you feel like there’s this big hole in your heart. It’s not like this. I’m seeing it right now as we talk. It doesn’t stay an empty hole. Because the others, there will be twines that will come in and mend, and make a beautiful tapestry. And it’s like with tapestries, you get to usually see the finished side. But if you look at the backside, it just looks like a lot of mess and snarls. So I’m still on this earth life where a lot of it looks like a lot of mess and snarls. But I hope that by sharing what I’ve been learning and healing, growing from, can be a way that gives, I’d like to use the word encourage. We use the word sometimes to a point the words no longer have significance. We want to say, I want to encourage someone. Well, now I take it apart, encourage. So I want to encourage them to find the courage that is in them. I love the John Wayne statement that courage is being afraid and doing it anyway because you don’t even have to, or something like that. That’s a paraphrase. But sometimes in our journeys, we need to find that courage, create is placed within us. Often the best ways to find it and to help those seeds to grow is from a caring community around us that encourages us to rise up, to grow like a seed to the dark, cold, winter earth, and come up, and bloom. Thank you that you’re holding it kindly and with gentleness. Winnie: Yeah. Yeah. I think so much of what you’re talking about resonates with me on lots of different levels, so appreciate it. Kate: Thank you. Winnie: Yeah. A pale-skinned Indigenous older woman with gray hair pulled back in a low ponytail stands wearing a sequined medical mask next to a circular piece of art on a wall. The art features horses, a child, a man in Indigenous dress, and a bearskin rug. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/11/kate_adams_podcast_photo-922x1024.jpg]

12 de nov de 2024 - 54 min
episode Episode 30: Jackie Feiss & Katy Gamelin artwork

Episode 30: Jackie Feiss & 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 one’s exactly sure. Concussion, surgery. Sometimes it can be just a big life stressor, something huge that’s happened to you, although that is more rare than some of the other subtypes. And then the biggest one, I think where a lot of people get POTS is they get something like Covid and they become long haulers and develop POTS. And there’s a huge overlap between long Covid and POTS, and the symptoms there. So an infection. And for me in particular, all of those things were true except for… Well, I guess life stressor too, because I got it during COVID. So I had a surgery, a little tiny foot surgery. And one week later I woke up and was just never the same. But I had recently had a concussion. I had recently had a baby, the world had just shut down, so we were trying to work from home with our two little kids. So who knows? But right after surgery is when it came on for me. Katy: Yeah. And that’s what I was wondering if you felt like the surgery was kind of like the straw that broke the camel’s back, so to speak, for your autonomic system. Yeah, it seemed that way history wise. Yeah. Yeah. I think that one of the things that I feel like is interesting about Covid that’s happened is that I feel like it has started to shed some light on things that had been obviously pre-existing around POTS, some of the, EDS, things like that. But now we’re really seeing a lot of people having more difficulties with those. Or especially in the world of POTS, you’re having people diagnosed for the first time. So it’s just really shedding a lot of light, and it’s really bringing it a little bit more to the forefront, which I think is a good thing. I mean, it’s unfortunate that that’s what it took to have more awareness, but I do feel like at least there’s more awareness coming because of that. Jackie: Oh yeah. I remember four years ago while I was trying to get diagnosed, I would go visit my primary care physician or someone within that office as he was off caring for Covid patients. Every week for six months, I would go in, and I understand the system, and I was determined. I had these two little kids and I was crawling around my house, unable to participate. My dad took time off to come move in with us and help care-take. I couldn’t do anything, and I would just take myself to my doctor’s office. And I would have to take driving breaks and put my legs up. And I had no idea why. And I was just sure that I was dying, just sure that no one could figure it out. I took myself to the ER multiple times. Nobody had a clue, just like, “Lady, these symptoms are not connected. What are you even talking about? Could you just pick one of these symptoms, please, and we’ll go with that today?” And it took my next door neighbor’s dad who lived in Massachusetts and a FaceTime call where he talked to me, bless his heart, for two hours, and I told him everything. And at the end of the two hours, he was like, “You have something called POTS and you need to go see this kind of doctor and they’ll be able to help you.” And unfortunately, I know this podcast is specific to Vermont. One of the really tricky things about being medically complicated is that we’re a small little state and we cannot support all of the people that have all of these types of illnesses here in our state. So my care team really consists of you Katy, who knows about POTS in the state of Vermont. And then outside of Vermont, I travel, sounds ridiculous, but I travel all the way to Arizona, to the Mayo Clinic to receive good care. And I have to do that on a yearly basis and head out to Arizona. And without that care team there, things would be much harder for me. So they manage my care there because it can’t be managed here in Vermont. Katy: Yeah. And that’s one of the things I wanted to talk about was just what has been your experience in Vermont about having, with a diagnosis like POTS. And I know firsthand for you that it’s been very difficult. Jackie: Yeah, I mean, I feel like I should add… So I have POTS, and that’s the primary thing we’re going to chat about today. But I feel like I should add what I have in addition just to make it really clear to people. So I also have something called pelvic congestion syndrome, which is basically, my veins were narrowed inside of my pelvic region and causing blood to back up there. And it was really adding to my POTS symptoms. So I actually have a stent placed in my left iliac vein to help the blood pass through. It was 98% blocked, something like that. I have autonomic neuropathy. I had cancer on my right eye, so I have reconstructed right eye. I have an aneurysm in my right leg. We don’t know why. I have some sort of connective tissue disease that we’re in the process of trying to figure out, possibly MCAS. I have some symptoms of that, which is called mast cell activation disorder. And then I don’t make enough carbon dioxide in my body so it can cause hyperventilation. So I have to do a lot of breathing work every day to keep my body regulated with its normal breath that everybody else doesn’t have to think about. All of these things are sister disorders. They go together and they’re commonly seen as comorbid. (I don’t think I can say that word, comorbidities for folks.) But when you have this cluster and you’re trying to figure it out, you really need specialists to be able to tease it apart to say, > “Well geez, you don’t have any of the risk factors for someone for an aneurysm, and you’re pretty young, and everyone else that has it is an 85-year-old man plus. So let’s figure that out.” And our team here in Vermont just isn’t able to do that for me right now. I’ll add though that since my diagnosis when I used to say POTS four years ago, no one knew what I was talking about, but you Katy, and just a few other people. And now when I go to the doctor’s office, I will say that folks seem to have heard of it because of COVID and Long COVID. They still might not know how to treat it, but they have heard of it. And so that’s progress. And the diagnostic delay was seven years to eight years, and I think it’s going down. I don’t want to say exact, I think it’s maybe five and a half or six years now. Katy: Specifically for POTS? Jackie: For POTS, for a POTS diagnosis. So long diagnostic delays. Katy: For sure, in Vermont specifically. Yeah. So let’s talk a little bit about, well, let me ask this question since we’re talking about Vermont healthcare as far as just POTS is concerned. If you had anything to say, if you wanted to say something to the medical community at large here, do you have any advice as far as where do we begin for doing better with, well, let’s just stay with POTS, specifically POTS. Where would you start with that? Jackie: So that’s a great question and I would ask you the same one, because I’m so curious. I think that a lot of times, the symptoms of POTS can make doctors think this person is anxious. And we now know, there is enough research that POTS does not come from an anxiety disorder. POTS is not an anxiety disorder. I will say sometimes if I feel like I’m having a heart attack, and I can’t breathe, and I’m grasping for air, and at the same time I can’t get up because if I get up, I’m going to pass out and I’m crawling to the bathroom, those symptoms might make me feel a little anxious. But POTS in itself is not an anxiety disorder. But when you walk into a doctor’s office and you look like a healthy 39-year-old woman who can mask her symptoms well. So I come in and I’m dressed, I am showered, I have makeup on sometimes, and I look healthy. And I walk into a doctor’s office and I talk about some of the symptoms that I’m experiencing. I often get someone slaps me on the leg and says, “Oh honey, why don’t you take a week off work? Go drink a glass of wine, relax.” And what I want to say to those doctors is listen to those patients, listen to their experiences. I have far better things to do than going and visiting a doctor all the time. And when I’m there, if you rule everything else out, maybe it is anxiety, and I’m happy that we’re talking about anxiety. I feel like that was ignored for far too long. But it should be only diagnosed as an anxiety disorder if everything else is ruled out and not be, “I have no idea what this is, and so I’m going to label this person with anxiety.” And I think oftentimes, these chronic health conditions are young women who look healthy, and they shouldn’t have to prove that they feel sick. Katy: Yeah, I agree with that. Jackie: What would you add to that? Katy: I would add, so it’s basically what you just said, but I think there’s four pillars. If I were to get real specific, I think there’s four pillars. And the very first pillar is that really, I think as medical professionals, we need to do a better job at listening and trusting our patients. If you have someone sitting in front of you that is complaining about symptoms, start with believing that those are the symptoms that they’re actually experiencing. And it’s not just in their head. Because I do find so many of my patients will come back from a doctor’s visit and say, “I think my doctor thinks I’m crazy,” Or, “My doctor kind of alluded to this is all in my head,” or, “I was in the emergency department and they just sent me home and said there’s really nothing wrong with me. I must be anxious.” Just like what you just said. The amount of patients that I see in the clinic that say, > “The doctors think I’m crazy!” I can’t tell you how many times I hear that. So I think it’s listening and then trusting that the experience that they’re having is the experience that they’re having. Then I feel like education. I feel like we could just do such a better job educating our doctors, our upcoming doctors, and anyone in the medical field I should say about these, we’ll just group together these silent illnesses where people look really healthy, but they’re not doing well on the inside for whatever reason. So autonomic disorders, autoimmune disorders, things like that that don’t always appear like someone’s sick. And then in addition to that, even neurodivergence. That needs to also be brought into that mix for sure. And then the other piece is access, because I think we really need to increase our access in Vermont. Those are the three, I feel like the big, big things that really need to happen. And I think really if we were to educate doctors, I think if we were to have better ability to hear a subjective report and really believe their patients, I think that we would already get better access by those two pieces. Jackie: I think it’s all of those things 100%. But I also think it’s okay to say, “I don’t know. I’m sorry this is happening to you. I don’t understand it. I’m not sure why. Let’s get you to someone who can help you. I know of these bigger medical centers that have people who have expertise in this.” It’s something like there’s only 70 doctors in the United States who specialize in dysautonomia or autonomic nervous disorders, and they’re very hard to find. In fact, I was just looking for one. And the waiting time is one year to get in to go see those doctors, and it’s because there’s such a shortage of them. And so I’m doing my best to access things that I can find online. I go to Dysautonomia International’s recorded webinars, and I listen to those experts talk and I learn. I probably have spent thousands of hours watching webinars trying to help myself, because really the closest autonomic expert to us is in Boston. Katy: Yeah. So with that said, I think that leads us really well into, I think we should talk a little bit about, what have you found that works well for you? Let’s talk about some strategies. There are some good, tried and true things in relationship to POTS that I feel like everyone should know. And then there’s some cool hack things that I feel like you might be able to share with us. So I feel like we should talk about some tried and true basics, and then some of the cool hack things that you know. Jackie: Yeah, so the basics are salt and water because people with POTS have a lower blood volume, and so you want to build your blood volume. It’s like if you had a water bottle and you had it sideways, all the water would be at the bottom. And when you lift it up, the water’s not touching the top. And so you try really hard with salt and water together to be able to fill that water bottle all the way to the top. And that would be the equivalent of enough blood reaching your brain. A lot of the symptoms of POTS are because not enough blood is reaching your brain. So salt with water is huge. Compression, ideally compression underneath. Whatever you’re wearing all the way up through your abdomen is the best. Socks help a little bit. And you want it to be a little bit tough to get into it, but I find for me personally, I’ll wear them with fidelity if I wear Spanx and that works for me. And then exercise. And that’s the hardest part I think. I mean, I went from being a very fit human who enjoyed going on long mountain bike rides or skiing for a full day to not being able to walk. And so what I found was going through this exercise routine, which is called the Levine protocol. The first three months, you get worse, not better, and you use all your energy for a whole day in 10 minutes or less of working out. And it was the hardest thing I think I’ve ever done in my life. And so I paired it with something funny to bring some humor to it. So I watched Schitt’s Creek while I went through the entire Levine protocol because if you don’t laugh, you cry. Katy: Yeah, totally. I don’t think I knew that. That’s great. I love Schitt’s Creek. Jackie: Those are the tried and true first line of defense. And then there’s medicines. So I take propranolol, which is a beta blocker, and it really lowers my heart rate to make it manageable for me to function. And when I get sick, I might need more than on a day that I’m feeling fine. I think changing positions, there’s lots of things that your PT could help you with around position changes to teach your body to be able to go from laying down to sitting up, sitting up to standing in a way that’s more methodical than the average person so that you could eliminate some of those things. So I’ll give you an example. When I’m laying down on my couch at night watching TV with my husband, if I go from laying down to sitting up and then I go walk directly up the staircase, my heart rate will reach 200. I will be really uncomfortable and I’ll sit and do deep breathing exercises for a long period of time. But if I know that the show is coming to an end and I have not fallen asleep, then I will sit up. And I might even walk around the first floor, get myself a drink of water, and just regulate my body to being upright for several minutes before I try to do that staircase. And on a really bad day, I like to crawl up the stairs or [inaudible 00:26:36] yeah. I think those are the tried and true things. Katy: Yeah, for sure. I think you covered that really well actually. Yeah. It’s special. I feel like you have tricks. Jackie: I think one of the biggest complaints that POTS patients talk about is air hunker. It’s something that happens to me frequently is just this feeling like you can’t breathe, but when you check your oxygen, you’re at 100. And there’s a lot of research actually this year going into why, why do people with POTS have air hunger? And there’s a lot of guesses as to why that’s happening, but there’s no, “This is why this is happening,” yet. But one of the primary research articles that I read recently is about low carbon dioxide in your body and how that can, I don’t know how, but for whatever reason, that is directly connected to air hunger. So I have these airborne tablets that are just the airbornes that put in your drink if you’re feeling sick. And if you break them and you bite them a few times, which would be something you would want to chat with your doctor about, but you can breathe over the carbon dioxide, and it has the same effect as breathing into a paper bag when you’re hyperventilating. And it gives you back that carbon dioxide that your body is lacking. And oftentimes, that air hunger sensation goes away. And sometimes I’ll notice I just start yawning and I can’t stop, and 20 minutes later I’m still yawning and I’m like, “I don’t have enough carbon dioxide right now,” and I’ll do one of the airborne supplements and get that carbon dioxide back. So that’s always with me wherever I go is just a little bottle of airbornes. Katy: Yeah, that’s a great one. That’s a really good trick. Jackie: Katy comes to my house every other week for home PT. And when Katy is with me, we often do some craniosacral work. And it is amazing. After a few weeks of not seeing Katy, I have these snowflakes in front of my eyes and it just looks like it’s snowing all the time, and things are a little blurry. And Katy will come in and she sort of puts her fingers behind my scalp in a particular place. And it’s gentle. It doesn’t hurt. And oftentimes by the end of that session, it’s like the veil gets lifted and everything is clear. I will say a lot of people with POTS are also hypermobile, and I am hypermobile. And so I often can’t feel myself in space. And so I might be leaning this way and Katy will say, “Hey, did you know you’re crooked right now?” And so really working with a physical therapist to align my body, to train my body, to make sure I’m not injuring my body has been the one consistent thing over the last four years that has made a huge difference in my ability to function and function without a tremendous amount of pain. So thanks, Katy. Katy: Oh, you’re so welcome. Oh my gosh, that’s great. You just made my day. That’s nice. Yeah, and I think there’s more and more PTs. I feel like PTs are definitely… I think if people were watching and they’re like, “I feel like I want a PT, that might be a great resource.” I think there’s a lot of physical therapists that are kind of on the cutting edge of these types of things. We’re seeing a lot of Long COVID, and we certainly see a lot of connective tissue disorder things because it comes out so much in the physical. There’s so much physical, right? Someone who’s hypermobile, obviously they have dislocating joints or subluxing joints and pain, so it’s not uncommon for them to go to a physical therapist. So I feel like we’re seeing a lot of that. I saw we collectively as physical therapists. So that’s a good place. That’s always a good resource to try. If people haven’t tried that, I think that that’s a good option. I want to ask a little bit about your job. I feel like you work already, so you are already working with the I-Team with the Vermont I-Team and working with children with disabilities. And I am just curious. I don’t know if we’ve ever really talked about this, but I’m just curious how… We talked a little bit about how that, it can impact your job because it does sometimes impact whether or not you go in the field or whether or not you do more online meetings and things like that. I’m just curious how your own disability has impacted or informed your work. Jackie: Yeah. Well, I think I’m just about the luckiest human alive to be working at the Center on Disability and Community Inclusion and on the I-Team and develop a disability while working for this particular organization. It was just such a gift. So the first six months, I had no idea what was happening and I could not sit up. And nobody batted an eye, just, “Okay great. Work from your bed.” And I would run IEP meetings in a laying down position with my camera off. And as we figured out what it was, my colleagues without me asking went and Googled it, looked at all of the accommodations, sent me accommodation lists, just put into place: > “All right, Jackie’s going to be in the beginning part of our meeting today. We’re going to do anything that involves her first so that she can go rest.” They just made it possible for me to keep working. And then I started to figure out as… And this is all happening by the way, during COVID lockdown. I think it would’ve been different had we not been stuck at home working. Then all of a sudden I wouldn’t have been able to go in the field and maybe that wouldn’t have worked. But the timing of how all of this landed the first full year of me having POTS, we were home, working from home. So in that way, the timing was kind of a blessing. And then I started to figure out that my symptoms were, for the most part, cyclical, revolving around my [menstrual] cycle. And so now I can sit down and make my own schedule for the most part. So I can schedule myself in the field at schools during the part of my month where I feel capable, and I’m able to drive, and I can go to schools. What that looks like is still hard. When I’m at a school, the lights bother me, the sounds bother me, the smells bother me. So I have to really show up prepared. I might be wearing a baseball cap or glasses that are really not fashion-forward. They’re bright orange and heinous looking, but I wear them. It might look like I have a fan with me to cool me off because I turn bright red. And a lot of people use air freshener-like scents that trigger what I call a mast cell reaction where my whole face turns bright red and I feel like I have the flu. So when I’m out in the field, I have to prepare for that. I always have to have those things with me. Might mean I use a walker or I use a cane, or if I’m feeling good, I don’t need those things. And then on the weeks that are lower weeks where I have more symptom load, I tend to work from home, and I’m able to do that and have virtual meetings with folks in schools. And then sometimes, it’s a nice combination balance that I’m still learning. I get excited. I want to go do three schools in a day. And I know that at the end of that day, I’m not going to have much left to be able to give to my family. And so I prepare for that. I know next Monday, I’m going to be at three schools for the day. So I have a frozen dinner that I just picked up from Richmond Community Kitchen, and I’ll thaw it on Sunday night so that on Monday, I just have to stick it in the oven or my husband can just stick it in the oven. And I use my energy planning or my energy envelope to say, “Okay, if I’m going to be going to schools this week, what can’t I do?” Well, I don’t want to go grocery shopping, so I have my groceries delivered. And I use my resources within my community to support planning and budgeting my energy. Katy: That’s great. And it’s kind of like you use the word ‘energy envelope’, and some people call it the spoon theory, if anyone’s ever heard of that. Right? It’s kind the same thing where you only have so much energy during the day. You only have so much energy for the whole day. How many spoons do you have for a day, and how are you going to use those, or how much is it in your energy envelope? And how can you use that so that you’re not completely putting yourself behind the next day? Because once you’re out, you’re out. Yeah, you’re done. Jackie: The last thing I’ll say too is I think it’s about, for me, it was a big journey of letting go. I am a planner. I love to plan. I would plan weeks ahead of time, and I would be so excited to know all of the fun things that I’m doing. And I would tell my kids about, “We’re going to go do this weekend, and then this, and then this.” And I really can’t do that anymore. I have to go with how I’m feeling in the moment. And I was so excited. I took my daughter to go get her hair done this weekend, and we were at the hair salon for the very first time together, and I was feeling miserable. I just felt terrible. And I keep playing this thing in my mind, “I can do anything for 10 seconds. Here I go, I’m doing it.” And I just kept that playing in my mind quietly while we were at the hair salon. But other days, I’m still feeling good at the end of part one of our adventure. Great. Let’s go on to part two. And so not saying ahead of time, “Yeah, we’re going to go out and get our hair done and get ice cream,” but really letting that be a game-time decision. Katy: Yeah, that’s a really good point actually. I bet that was a hard thing to transition, because that’s kind of who you were, and then that’s a big piece of what you had to change. I bet yeah, that’s hard. Jackie: There’s power in letting go. Katy: For sure. Absolutely. Do you feel like you show up at work differently as far as just not so much with regard to your disability, but in relation to your clients, I should say? I bet that has given a totally new viewpoint. Jackie: I will say yes. I have several folks that I work with that are questioning if they have a POTS diagnosis. And there is particularly between hypermobility spectrum disorders or Ehlers-Danlos syndrome and autism, there’s a big correlation that is being studied right now. And also, the autonomic nervous system and the sights, the sounds, the smells are something that has always affected many of my students that are on the spectrum. And I have this feeling of maybe this person can’t tell you that the lights are bothering them. Maybe they can’t tell you why they’re taking off their shoes, because it is physically painful to have those shoes on, but let’s just work with what they’re showing us. They’re showing us that it’s too loud, they’re showing us that it’s too smelly or whatever it is. And I did not understand how painful lights could feel in particular. Lights pierce my eyeballs, and they hurt. For a long time, my husband actually wore a headlamp in our house while he was trying to grade his math papers because I could not have the lights on. We just lived in the darkness for two years. So it really gave me a new perspective on wow, this really hurts. And we have to really respect that it hurts and not teach you to tolerate it, but what can we do to accommodate it for you? Katy: That’s great. And you were probably already doing that to some degree, but you have this next level of compassion and understanding, a little glimpse of understanding of that. That’s awesome. One of the things I feel like I want to say before we move into anything else is just that I think it’s important to note your journey where, because people have heard you having, now you’re teaching dance, and you can ski sometimes, and you can go for walks outside, and you’re working sometimes in the field and sometimes at home. And those things are hard and they’re an effort. You have to consider your energy envelope. But that’s where you are now. And where you started from was you literally couldn’t sit up, you couldn’t walk. You were crawling around, you couldn’t tolerate light. And the only reason I want to just point out that spectrum is because I feel like you’re a good example if someone is hearing this when they’re in the beginning stages, and it’s really hard. I think it’s really a great, just to see how you can evolve, and it can improve, and there are things you can do to improve your situation, and to have a little hope to getting stronger and better. And I feel like that’s just an important note to make sure everyone’s catching that piece, because it has been a massive journey for you over the course of the four- Jackie: And Kate, I think that that’s true for so many people with these particular constellation of chronic illnesses is over time, things get less scary. Yesterday, I was in a meeting and my chest felt like it was going to, I don’t know, break. It hurt so bad. And rather than focusing on it, “What am I experiencing right now? What’s wrong?” I’m calm about it now. I’m not freaked out anymore. And so I’m able to just take a deep breath in and be like, “I’m in pain right now. Maybe in an hour from now, I won’t be anymore.” And you learn, you learn how much energy you have. And it takes time. There’s no magic bullet here, but over time, my life has evolved to be just as beautiful as it has always been. And would I wish this on someone? No, I would not. But now that I have it, this is just life. And I’m grateful for every day, and I am so excited when I can go do fun things, both little things, little adventures like bath time with glow sticks for my kids or big adventures going to the local fair this weekend. So I think it’s just about where you are in the journey and knowing that this particular journey takes time, and learning, and patience, but that you’ll get there over time. Katy: Yeah, that’s great. I feel like that’s such a good message. And then I just want to ask you, because we talked a lot about your I-Team work, and clearly you have educated yourself. You’re very informed about your diagnosis and have a great understanding. You also are doing some coaching as far as chronic illness and things like that. So can we talk a little bit about that as well? Jackie: I just feel like this journey is really unique when you have a chronic health condition that’s invisible. And it really helps to talk to other people who have experienced it. And I’ve had a lot of really giving, amazing people who have POTS, who I’ve reached out to and have graciously just given their time to me to have a conversation, to support me with tips and tricks that work for them, to give me hope, to problem solve with me. Because there are so few doctors, and you can’t call your doctor on speed dial, a lot of this community just supports each other and raises each other up. And I want to do that for other people. And so right now, just on the side, as people reach out to me, I’m doing a little bit of health coaching. It doesn’t have to be around POTS, but just chronic illness in particular, and just supporting folks to find those resources that they need in their community, and taking things one step at a time. Katy: Yeah, that’s great. I think that’s really exciting. I think we really need that here. And I agree. I think what I see so much is that really, it’s the community helping each other really figure this whole thing out just because we’re struggling in the medical community here in Vermont. So great. This was great conversation. Is there anything else that you want everyone to know? Is there, yeah. Jackie: I wrote down some notes, and the last thing that I wrote down that I didn’t say, and I want folks to know this, is it can feel really uncomfortable for people in the community to know what to do or how to help people that are living with this invisible illness. And for the people who are living with it, there’s so many times that you’re questioned that you want folks to know, > “I’m sick, I’m sick, I’m sick. Just because I’m having a good day, doesn’t mean that I’m all better. And it doesn’t mean this is going to go away. This is a forever thing.” And it’s this weird place that you’re in where you’re like, > “I don’t want to have to prove that I’m sick, but I also want people to talk to me about other things that don’t have to do with my illness.” So just, I think for folks that are trying to understand and support someone who is living with any of these types of invisible illnesses, you don’t need to say, I’m so glad you’re doing so much better now. Things seem so much better for you.” Or making comments about how you perceive their progress, because the progress is going to ebb and flow. And for me in particular, it’s ebbed and flowed in a nice upward trajectory, but there are days that it doesn’t feel that way. And then there are days that it totally feels that way. So just acknowledging like, “Hey, things seem good today. Yay, that’s exciting.” Rather than making blanket statements about, “Oh, you must be fine now.” I think that’s an important thing to know. Katy: Yeah, I think that’s a really good thing to know. And yeah, actually, you brought up a really good point. I actually had this on my notes and I’d forgotten to ask, but about allies, POTS allies. I mean, you just gave a really good suggestion there. Is there anything else? I’m sure there are people who are listening to this that don’t maybe have POTS, but they’re allies of people who do. Is there anything you feel like would be helpful for them to know outside of that? Anything specific outside of just recognizing that, just looking, taking a day by day, and not making the blanket statements? Jackie: I think I’ve been so fortunate with all the people in my life that have really stepped up for me since I’ve had POTS. I had folks that would come over, and pick me up off the ground, and put me in a chair when I couldn’t get myself up. And just being there for me, and just being okay with living within this realm of, “Okay, we’re going to make plans. We’re going to say that we’re going to go out for Thai food on Thursday. And if that doesn’t work for you or something comes up and you’re not feeling good enough, we’ll reschedule. Don’t worry about it.” Because 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. So I have a lot of friends who will be like, “Oh, you’re not feeling good enough to go out? Let me come to you.” Or just the flexibility of, “Let’s plan. We’re going to hang out on Thursday, and if that means we’re going to lay down and watch TV together, or we’re going to go out to dinner, who cares? We’ll figure it out on Thursday.” And those are the people who live in the trenches with me who I just couldn’t live without. Katy: Yeah. That’s awesome. I love that. That’s a really good message I feel like for allies to hear. And just remember, it’s not because they don’t want to hang out with you. Right? It has nothing to do with you. They may not just may not feel up to it. Yeah. That’s great. Well, I’m so glad. This was great conversation. I loved this. Jackie: Thank you so much for doing this, Katy. I really wanted to do this with someone who knew me, and knew me well, and has been a part of my journey, and I’m so glad you were able to do this today. Thank you so much. Katy: It’s an honor that you asked me, honestly. It really was. I really appreciate it. Yeah, thank you. Okay. Jackie: All right. Sign off. Katy: Signing off.

17 de oct de 2024 - 51 min
episode Episode 29: Lynn McNamara and the Nature Conservancy Vermont artwork

Episode 29: Lynn McNamara and the 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 a wooden boardwalk leading across a heavily planted bog, under a thick layer of mist. Rolling hills barely visible through the mist in the background. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/09/boardwalk-entrance-1024x768.jpg]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. A group of lady's slipper flowers: orchids that have a large fuschia bowl petal hanging below a creamy white trio of top petals. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/09/453202890_e06ff35a1f_c.jpg]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. A plain wooden seat sits to one side of a plain wooden boardwalk leading across a fen, toward a bank of thick green pine trees. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/09/seating-and-boardwalk-1024x768.jpg]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 lot of feedback on your work with the bog area? Are you getting a lot of feedback from people with disabilities on ways that they’re enjoying the upgrades that have been or ways that they’re still pushing for additional access? Lynn: Yeah, we’ve had a lot of feedback both at Eshqua Bog and our Raven Ridge natural area that’s in Moncton that has an accessible boardwalk and trail that ends at a beaver pond, so there’s a little wildlife viewing platform there. And we get a lot of feedback that people are so happy that it’s accessible, but not just from folks with disabilities. Improving access for disabilities really improves the experience for everyone. So we hear from families with small children or people who’ve never really been out hiking much. Having a nice wide safe trail can be much more welcoming than a very primitive narrow trail to somebody who’s never really been out. So we’ve had great feedback. And we’ve also put up some trail counters, we’re trying to measure improvements in visitation. And in places where we’ve improved accessibility, we generally probably have gotten like three to four times as many visitors once the trail is improved. Audrey: I hadn’t realized that the improvements generated that much more interest. That’s amazing. When the Nature Conservancy was going through this process of having to learn about accessible trails and accessible pathways and walkways, were there some ways in which you felt like Vermont as a place or state was supportive of the efforts that the improvements that the Nature Conservancy was trying to make? Lynn: Yeah. I know I talked about the permitting processes previously, which were at first a little overwhelming to me because I hadn’t really done that before. And in both of the places we’ve created accessible trails required Act 250 permits and I know I say that and it might scare people. But the Act 250 permit process, we need wetlands permits as well, the staff at the state, the permitting staff, were very supportive of these projects. I think for them, it was wonderful to see somebody trying to improve accessibility, even if it was in a wetland. So they wanted to make sure that we were able to navigate the permit process well. And so we had a lot of supports from the regulatory folks. So I would say: don’t be afraid of the permitting process. Yes, those permits can seem daunting, but it wasn’t so bad. Same with fundraising. The cost of some of these can also seem overwhelming, but we’ve really had great success in fundraising for these projects. There’s state funding, there’s private grants available and there’s just a lot of private donors who are interested in supporting these kind of projects. Audrey: I think the flip side of that question is when you were going through this process with The Nature Conservancy of Vermont, were there any ways that you felt like Vermont was particularly forwarding the process or there are spaces in which Vermont could create friendlier systems for these accessibility upgrades? Lynn: Of course, fundraising. Yes, fundraising is easy, but these projects are also very expensive. So having more sources of funding that are larger. Sometimes I think the Recreation Trails program grants about $50,000, and honestly, that doesn’t go all that far for some of these projects. But some of the more recent grants, like the VOREC grants at the state that have an accessibility focus, those are a bigger chunk of money. So from a fundraising perspective, it’s really great to get a big chunk of money, especially at the start of a project because that can help bring in some smaller gifts to finish up the project. Also, one thing, as I mentioned earlier, that I think would be great in Vermont would be to have a central place where people could go to find where these accessible trails are located. And I’m just not aware of if there is a place, I’m not sure if you are, or more accurate information on AllTrails or Trailfinder, just a place where people could just if you’re looking to get out in nature, you could find a nice list with links, I think that would be great. Audrey: It’s interesting that you mentioned the VOREC grants because one of the VOREC grants went to the Vermont Trails and Greenways Council. And their project is actually to build a hub, a website that pulls all the information about accessible trails together into one place. So that exactly what you said, you can look up your favorite place before you head out there to see if the trails are going to meet your needs. Lynn: Oh, that’s wonderful to hear. Audrey: Yeah. Obviously, we hope that all trails become eventually accessible because earlier you were talking about how the feedback you’d gotten came not just from people with accessibilities, but also from people pushing strollers, that comes under the heading of a situational disability, having to navigate that stroller over rocky terrain or through a narrow dirt corridor between high grasses. But it’s just as important for those people and that family to get access to that natural area as it is for someone in a wheelchair or someone using a cane to also be able to navigate that trail. Lynn: Yes, definitely. Audrey: So what’s one thing you wish you had known about disability or about Vermont or both 10 years ago? Lynn: I think one thing we’ve really seen is how improving disability access improves access for everyone. And I really hadn’t realized that prior to working on these projects. But as we said, in addition for folks with say situational disability like people with kids in strollers, I think these accessible trails and boardwalks can really provide different opportunities. We often see photographers or other artists out there setting up on the boardwalk and it just makes for an overall more welcoming experience for everybody to get out in nature. And 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 increase traffic. We have less erosion. And even with some of the storms that we’ve had in the last couple 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. A wooden boardwalk gradually turns to gravel as it enters a thickly wooded area. [https://cdci.w3.uvm.edu/blog/cdciresources/wp-content/uploads/sites/3/2024/09/boardwalk-to-gravel-1024x768.jpg]The boardwalk at Raven Ridge Natural Area, where it meets the path leading to the caves.   Audrey: I love hearing that. I had no idea that the more accessible trails actually were sort of more fiscally responsible because they need to be replaced fewer times than previously. I’m wondering because I live in Hinesburg, where as a town, we’re talking about building a green space in the middle of town that is for everyone’s enjoyment. And so far, the biggest topic of contention has been the walkways because people want paths that go through this green space that are technically accessible but also fiscally responsible because everybody is having this conversation around the way that towns and municipalities use tax monies. So what’s one piece of advice you could give to someone living in Hinesburg or someone in a town that has a similar situation going on where they’re trying to have these discussions with the select boards and with other townspeople? What’s one piece of advice you have for those people in terms of advocating for accessible trails and walkways? Lynn: I think yes, money is always going to be contentious, but that shouldn’t be the primary deciding factor on whether these spaces truly are going to be for everybody. There are grants that municipalities are eligible for. And I think maybe towns are a little more fiscally conservative. There’s always going to be loud voices on every side of when money and taxes, property taxes, come up. But I would say I think towns have a responsibility to everybody and maybe even more so to folks with disabilities. For many years, folks with disabilities and others were disenfranchised a bit and didn’t have a voice. And I think now we do. And it’s important for towns to advocate for everybody in their town. Audrey: I love that. I love the idea that people with disabilities are a constant presence in conversations around building these natural areas at the town level. I love that that should be standard when you’re having conversations with the select board to remember that people with disabilities are part of every single community. So a couple last questions and then I’ll let you go because I know you’re super busy. But has your dad been out to see the lady’s slippers yet? Lynn: He has not and I’m not sure why. I think they generally bloom around June 21st, which just always feels like a very busy time of year for everybody. He lives in Massachusetts and it just hasn’t worked out to go there. But I have taken him to Raven Ridge and he’s been to the Barnes Camp Boardwalk up in Smuggler’s Notch and really enjoyed that as well. So next year for sure, we’ll make sure we get to Eshqua Bog to see the lady’s slippers. Audrey: Excellent news. And then the last question I have is simply if you have any one piece of advice for other disability advocacy organizations or other outdoor natural area advocacy organizations on where to start with pushing forward with accessibility in the natural outdoor areas around them? Do you have any one piece of advice you could offer? Lynn: I would say for folks that are involved in making spaces more accessible, for managing these places, is to not be afraid. As I said, I had zero experience when I started working on this 12 years ago or so. If I could do it, anybody could do it. There’s a lot of help out there. There’s a lot of resources at the state. There are grants. And I’m happy to talk with folks if you want to reach out to me for more details about some of the projects I’ve worked on. And I think this is something that’s really important for Vermont, for Vermonters. And having advocates, both who are managing lands and who want to get out more, will just continue to improve accessibility for everybody. Audrey: Amen to that. Really love that. Lynn: Great. Audrey: Lynn McNamara, thank you for joining us from The Nature Conservancy Vermont to talk about accessibility in Vermont’s natural outdoor spaces on Green Mountain Disability Stories. Lynn: Thank you, Audrey. It’s been my pleasure.

30 de sep de 2024 - 27 min
Muy buenos Podcasts , entretenido y con historias educativas y divertidas depende de lo que cada uno busque. Yo lo suelo usar en el trabajo ya que estoy muchas horas y necesito cancelar el ruido de al rededor , Auriculares y a disfrutar ..!!
Muy buenos Podcasts , entretenido y con historias educativas y divertidas depende de lo que cada uno busque. Yo lo suelo usar en el trabajo ya que estoy muchas horas y necesito cancelar el ruido de al rededor , Auriculares y a disfrutar ..!!
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