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Green Mountain Disability Stories
Hosted by Green Mountain Disability Stories · EN
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 24: Phoebe Chestna and Ben Wimett
Mar 22, 202400:37:30Tap to summarizeIn this episode, occupational therapist Phoebe Chestna interviews Ben Wimett. Ben is a lifelong Vermonter, living down in Brandon, Vermont, with his dog, Pepper. Ben also has cerebral palsy, and works as an assistive technology provider with the Vermont Assistive Technology Project. And Ben’s here to share his stories of navigating Vermont schools (and snowbanks!), how power wheelchairs have changed over the years, and his advice to children with disabilities — and their parents. “The biggest advice I can give you is that if something happens, it’s not your fault. The biggest thing I can tell you is deal with the cards that you’re dealt. And I think the way my family did that is, yeah, I had to do things differently, but if I wanted to do something, we did it.” https://youtu.be/zPvoFnHCZ0c A full transcript appears below. Phoebe: Welcome to Green Mountain Disability Stories. I’m Phoebe Chesna, and I’m an occupational therapist (OT) with the Vermont Early Mobility Project. I have the pleasure today of having Ben Wimett join me, and we’re going to be talking about Ben’s experience over the course of his life as a power mobility user. Ben, I’m going to pass it to you to introduce yourself. Ben: Hi. As Phoebe said, I’m Ben Wimett. I’m a lifelong wheelchair user. I will be 40 this year, and I got into a powerchair for the first time when I was four years old. I also work with CDCI as an assistive technology specialist. I cover the southern region, parts of the central region for some of our programs, and really wherever they tell me to go. So that is me in a nutshell, other than three years of college. I’ve been a lifelong Vermonter. Don’t have any plans to leave anytime soon. Love the outdoors, hiking, fishing, hunting, photography. Yeah, that’s me in a nutshell. Phoebe: Thanks, Ben. Really appreciate you being here to share your story. I’ll just reflect to our audience that I have been an OT longer than Ben has been on this earth, so it’s been really interesting to learn about his journey accessing healthcare, accessing equipment systems, and all of those pieces. I also have the pleasure of living in the same community as Ben, and being appreciative of what an outdoorsman he is. So thanks so much, Ben, for joining us. Ben: Thank you. Phoebe: I’m really hoping that you can describe your journey through wheelchair use and mobility, going way back. Ben: What first approached me for this, I could remember going to Kids on the Move, or it was just referred to as VAC when I was really young, Vermont Achievement Center, and going down this long dark, dingy hallway to this room, and a bunch of people were sitting around in a circle in those little plastic colorful chairs from the ’80s, and they were all there and they kept asking me questions and all these funny things, and then they started bringing out wheelchairs and wanted me to get in it and drive it. And I remember my first … That was they wanted to teach me how to drive it, and I was like, why? It is just like a Nintendo. You want to go forward, you push it forward, you want to go backwards, you push it backwards. And I do remember they put me in it and instantly went, “Well, he’s four years old, but we’re not going to have to teach him how to drive.” And then I remember just … Comparing then to now, back then when I was younger, there was no … For my first wheelchair that I remember anyway, there was no measuring of seats, there was no custom seat cushions, there was no choices. You kind of got what you got, and then hopefully there was a PT, OT person that would kind of help you make modifications. I remember … I’ve always leaned to one side, so my first seating modification, it wasn’t anything formal. Somebody took a piece of wood and took two brackets and put it on the side of my wheelchair by where my armrest was. So when I started to lean, I could grab it, and pushed against it and set myself up. I think my first wheelchair might’ve had a seat belt, but if it did, it was pretty crude. It was something that somebody tied in there. Yeah. And now, fast-forward 36 years and I’ve got a wheelchair that’s full standing chair. I can get stuff out of high cupboards. I can walk around on sidewalks and level surfaces with my dog. I can do pressure relief stuff myself. I have lights, so I don’t have to worry about getting hit at night. I’m not going to say things have come full circle, because every time I think, “Well, wheelchairs have gotten as good as they’re going to get,” they come out with something different. Phoebe: Ben, is accessing and obtaining a new chair, a new design, different now? Is it easier? I hope it is. Ben: It’s so much easier. And I would say, even though for some people it’s still a wait, most of the time it’s a much faster process. I can remember my first chair, I think we waited over a year for it to get approved and built and delivered. I think I was about four and a half when it was fitted, and I think I was almost six when it was delivered. So it took a long time. Now when you go to a clinic there are … Well, it’s different. They’ve kind of changed the way they do. It used to be every provider was there bidding for your business, literally. And it was kind of weird because you felt like a client, but you also felt like an account, because they were all trying to, “Oh, well, we can do this and we can throw this in, we can da, da, da, da, da.” And it was a very different atmosphere. Now, which I definitely appreciate. You pick your vendor ahead of time so that when you get to the clinic and you get to the fitting, you don’t have three or four different varying opinions, and, “This is what we should do,” and, “This is the wheelchair brand he should go with.” As long as it is not your first chair, hopefully you have a pre-established relationship with a vendor. They know you, they have a good relationship with your therapist and they have a good relationship with you, and it’s a much more seamless process now. I would say even in the last five to 10 years that’s changed, and it’s a change for good. There is just so many more options available too. When you look at the power bases themselves, there’s anything from simple to rear wheel drive, front wheel drive, mid-wheel drive, standing, reclining, anterior tilt, power leg rest, air chambers in seats. All these things that when I think about my first wheelchair seat, I think it was literally something that my mom picked up at Joanne Fabrics in Rutland and put some sort of cover on, because the wheelchair did have a pad that was built into it, but it wasn’t … I can’t quite remember, but it wasn’t tall enough, or it didn’t provide enough padding for me to sit in it all day. But things really have come a long way, and now there’s guards to help me not lean and things to hold my knees in place and to cancel out my spasticity. Everything’s measured and double-checked. When there’s a custom-fitted wheelchair now, they mean it, and it hasn’t always been that way. Now what I struggle with is, even as an adult, and probably six, seven, eight wheelchairs in at this point, I struggle with finding a balance for myself that keeps me into that perfect therapeutic position, but also lets me have an active life and lets me still do things like lean over and grab something out of a cupboard, or bend forward to grab something. So when I’m in clinic, I’m constantly thinking to myself, “Okay, I see what they’re trying to do, but how is that going to impact my activities of daily living?” And I try to work with a therapist to find that happy medium. So yeah, and it’s good. I have therapists that know that I do have a pretty extensive background, so they’re like, “All right, Ben, you know what you need. Just go.” And I think finding a therapist that you work with really well, as well as an ATP from your vendor, and assistive technology practitioner, is really key. My practitioners know that when I have a fitting, I know what’s out there. I know the new technology. I’m going to ask, “Is this appropriate for me?” Thinking about families, and especially early mobility, I have a little bit of advice. It’s important to educate yourself, but it’s important to realize that you don’t have to know everything, especially if you have a relationship with your OT and PT, they’re going to know you and they’re going to work with the ATP from the wheelchair vendor, and they’re going to reiterate what they know about you, and they’re going to be your best voice. So you don’t have to know everything. You don’t have to be like me and start doing your own research. Phoebe: Yeah. I just want to interrupt you for a second...
Transcribe →Episode 23: Emerson Wheeler and Jan H.
Mar 14, 202401:07:34Tap to summarizeJan H. lives in Southern Vermont, and in this episode, she tells her story of living with multiple chemical sensitivities to Emerson Wheeler, Health Equity & Community Engagement Coordinator at the Vermont Department of Health. Jan talks about how Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, or ME/CFS affects her options for housing, employment, healthcare, and just about every facet of her life. She also shares what other people can do to advocate for themselves as well as make it easier for her and other people with ME/CFS to be included in their communities. https://youtu.be/ZCY9ho40vMc A full transcript appears below. Emerson Wheeler: Welcome to the podcast Green Mountain Disability Stories. I’m Emerson. I use he/him or they/them pronouns. I’m a white person with short brown hair and rectangular glasses and a plaid blue button up shirt on. And I work at the [Vermont] Department of Health as a health equity coordinator for disability. And I’m excited to interview Jan today. Jan has multiple chemical sensitivity. She also has ME/CFS, which is more commonly known as Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, as well as two chronic pain conditions. She works part time from her home in Southern Vermont, and in her spare time, she advocates for improved indoor air quality, and runs a website called FragranceFreeFriends.com. Jan, do you want to do a little intro of yourself and your visual description? Jan H: Thank you, Emerson. I am a fair-skinned woman with dark, short hair and dark glasses frames. I’m wearing a green sweater and a headset for the interview. Emerson: Thank you. Do you want to start by just telling us a little bit about, like what it’s like to live with multiple chemical sensitivity and your other conditions? Jan: Sure. And, you know, I want to say just how much I appreciate being invited to this podcast because I feel like the health conditions I have are not, like, not super well understood. There’s a lot of misconceptions about things. So just thank you for having me on. For me, I came down with the Chronic Fatigue Syndrome, ME/CFS, about 23 years ago. You know, I was pretty much in the peak of my productivity. I was working full time, and I was on the board of my church, I was on the local Conservation commission. I got a — I call it just the worst stomach bug I’ve ever had. It was pretty horrible, but it didn’t last very long. But after that I was just never the same. I remember going into work and I was just dragging, and telling my boss like, “I haven’t had a good day in two weeks. I don’t understand what’s going on.” And there came a point where I couldn’t keep it up. Like, there was a standing room only meeting that they had for work. And I had to leave. And I went to the nurse and I’m like, “I don’t know what’s going on.” And so she, you know, told me to go home and go see my doctor. I was extremely fortunate to be diagnosed with chronic fatigue syndrome pretty early on. It’s a diagnosis of exclusion. They say, “Well, you don’t have thyroid — your thyroid is okay. This is okay. That’s okay. You must have chronic fatigue syndrome.” And she was knowledgeable enough to tell me that what I really needed to do was pace myself? Not try to push through? And just take really good care of myself and let my body try to restore itself. Over time… I got a lot better. I mean, there was a period of time when, you know, I wasn’t working. I was pretty much just lying on the couch reading. I read through the entire Bible. (I did skip some of that, like really lengthy stuff in the middle with all of the families and everything.) But I mean, I just I couldn’t do much. Just the smallest everyday tasks became utterly exhausting. I couldn’t access like, half of my vocabulary, which was infuriating for a person who really works a lot with words. And… there were other things that went along with it: body pains and stuff. And people are starting to hear about Long COVID now, which is very similar. And some researchers are saying that there’s a certain percentage of people who get Long COVID who are going to end up with ME/CFS. So I think it’s really timely, you know, to understand what chronic fatigue syndrome is. For me, I was working at home when I started working again. They set me up with remote access, which at that time was pretty uncommon. And so I’d been working at home for a number of weeks, and my work was pretty much just stuff on the computer. Luckily, there came a day when I got up and I’m like, “Boy, now I feel pretty good.” I think I called my boss up, I said, “I’m going to come to work today. I think I can come to work today!” By the time I ate breakfast, finished taking a shower and getting dressed, I was like, I can’t drive to work. And I had to call him and say: “Oops!” So it took a long time. But eventually, you know, I gained a significant amount of recovery. I’ve never been able to work full-time since then. It’s always been part-time, which, as you can imagine, has been financially very difficult. At this point, the thing that really impacts my life the most is the multiple chemical sensitivity. It’s not that I’ve gotten over the Chronic Fatigue Syndrome, but with time I started to realize that… it seems like it may even be that the chemical sensitivity is kind of what led to the Chronic Fatigue Syndrome. It was a major stressor on my body, and maybe that one illness just put me over the edge. The last straw or something. But living with the multiple chemical sensitivity… it’s, you know, it’s kind of like an allergy, but not it’s not a “classical” allergy. Again, they don’t understand it super well. But the MCS affects like every aspect of my life. Like: the products I can use where I can live where I can work who can come into my home how I shop when I can be out in my yard or not. And the reason is because it’s not just the chemicals that I choose to use, but it’s the chemicals that other people use that are volatile, that get into the air and I breathe them in. Caused me a lot of trouble. And that’s the stuff that I, you know, have very little control over. As you can imagine, it can be pretty hard in the workplace. That place I was working when I first got sick, they had a lot of chemicals there. And although I was in an office job, it was in the same building. And you walk past the chemical areas and whatever. And I didn’t think much of it at the time, but I did develop kind of an allergic asthma and then I came down with the CFS. So I think it was all related. But just as far as what it’s, you know, what it’s like to live with MCS? (And I would say I’m speaking for me, because people’s experiences are so different in terms of the chemicals that they react to. Everyone’s different — and even I’m different over time. It used to be I just reacted to like, 3M desk cleaner and aftershave of the dude who worked next to me. And over time either, I think it’s a combination of I’ve picked up more sensitivities? But also the chemicals that are used in consumer products have changed over the years since I first got sick. Chemists are inventing all kinds of new molecules all the time. And sometimes they smell interesting. And sometimes they smell good — at least to that chemist. And they say, “Well, maybe we can market this to the to the scent-marketing companies.” Who then market to the laundry product companies and cleaning, chemical companies and body care companies. So those molecules get into these products that everybody uses. And those kinds of products are not regulated the same way foods and drugs are. People are absolutely astounded when I tell them that just because it’s on the shelf doesn’t mean it’s safe. Because there’s nobody in charge of regulating… the safety of like, what you breathe in from cleaning products, perfumes, shampoos, laundry products, things like that. Air fresheners is a huge one! So that was a big core dump. Okay, maybe I should pause and see if you have any questions about what I said? I don’t know. What do you think? Emerson: Thank you for sharing all of that. That’s why you called it Fragrance Free Friends, your group. Because the fragrances are a big part of this? Jan: Yeah. So, for a lot of people, the fragrance chemicals are really one of the worst triggers. Like I said, everybody’s different. But, you know, I belong to various support groups on Facebook and places, and we hear a lot about people reacting to fragrances. But there’s other volatile things. You know, things that are used in cleaning chemicals and whatnot that are also a problem. And I can talk more about what the symptoms of MCS can be for different people. But the reason really that I called my website Fragrance Free Friends is because a lot of people are reacting to these things and have never heard of Multiple Chemical Sensitivity. They just know, “Oh! you know, this is how it started happening for me: when I drive my grandmother to go shopping, I feel I don’...
Transcribe →Episode 22: Winnie Looby and Leah Schulz
Feb 21, 202400:27:23Tap to summarizeIn this episode, UVM faculty member and academics coordinator Winnie Looby interviews Vermont artist Leah Schulz. Leah’s art directly references her experiences of multiple disabilities, as well as addressing and incorporating elements of who she was before she became disabled. Leah’s painting “Cyclical Choices” (2023) is part of an exhibit of work by Vermont artists with disabilities. The exhibit is being produced by Inclusive Arts Vermont, and is being shown at the UVM Davis Center, in Burlington Vermont, before being shown around the state, and then returning to Burlington for an extended residency with the UVM Center on Disability and Community Inclusion. We’ll hear from Leah about her journey as an artist, as well as how disability shapes her art, and what it’s like to be back on the UVM campus — this time as an exhibitor, instead of a student. https://youtu.be/ijV7C7AnelI “I have drawn a diagram of my pain cycle over and over again in my journal and it goes like this: something happens to induce more pain or symptoms, it sends me into a flare and my reaction is to panic, a feeling like a free fall, and then freeze up and curl into the fetal position. I would try and help myself, reaching out – seeing specialists, and researching possible diagnoses and treatments, but I was getting crushed over and over again by a cycle of uncontrolled symptoms.” –Leah Schulz Dr. Winnie Looby: Okay, So welcome to Green Mountain Disability Stories. I’m Winnie Looby and I am a lecturer and program coordinator for the Center on Disability and Community Inclusion at UVM. And today we’re here with Leah Schulz, who’s a Vermont artist. Her work is being included in a recent exhibit of art by Vermont artists with disabilities through Inclusive Arts Vermont. Leah, could you introduce yourself, please, and tell us who you are and what you do? Leah Schulz: Right. Thank you for having me. I have been listening to the podcast and you guys have had some great guests, so I’m really honored to be here. Thank you. So yes! My name is Leah Schulz and I am a watercolor, linocut, and acrylic artist. And I live in Williston, Vermont, with my husband and my cat, Norman. I am actually a UVM grad. I got my MBA from UVM in 2015, and my background is in consulting and I also used to work for the [Vermont] Division of Aging and Independent Living (DAIL). So I have had a career working in the field of disability as well. So I like to share my diagnoses, because you really never know when someone is searching for a diagnosis and they hear a diagnosis, especially of rare condition, so I like to share that information because I really never know when someone is looking for that. *laughs* And so I have Ehlers-Danlos syndrome. Mast Cell Activation Syndrome and hyper adrenergic POTS and small fiber neuropathy, and erythromelalgia (That’s a tricky one.) And then I am currently studying to be a certified personal trainer and Reiki practitioner as well as wellness coach and certified nutrition counselor. So: that work I hope to do with disabled people to help them regain their strength… as I have been doing for the last few years, so excited about that work as well. Winnie: Yeah, it sounds great! I love how your career path has kind of gone along with your personal path. So you’ve made some some — you’d call it lemonade out of lemons experiences, and then your, you know, generously giving of yourself to other folks. I think that’s incredible. So I have some questions here and we can kind of follow them, and kind of just be organic about it. It’s up to you. So I’m curious how your disability and your art kind of interact. What’s that influence? Leah: Yeah, I wouldn’t be an artist if I wasn’t disabled. I have my bachelors in Biology, and Peace and Justice Studies, and I have an MBA in Sustainable Entrepreneurship. So I sort of used that side of my brain and thought that art was not something that I could do or that I was good at, or I had the time to be doing something so enjoyable, which is funny to say now. So when I became too sick to work five years ago, I suddenly couldn’t really use that other side of my brain. And art became my lifeline. It was something that I could actually do to pass the days. And in those early days of getting sick, it was really what saved me, mentally, and brought new life and new perspective into my life? So I very much feel like it’s tied to my disability in a lot of ways. And then I learned that art is a lifeline to community because I was suddenly no longer on campus or in the work environment. And my ability to share my art — online — was really my only connection to other people in a lot of ways. And then I also found that art is… a radical act because it says, “I’m still here, I still exist, and I may not exist in person in these spaces, but here, me sharing these things? Is a connection that says I’m here.” And when you tie your feelings, your expression, your experience of disability in your art? That becomes even more the political act. Because it makes people look, and see, and reminds them that disabled people exist. Winnie: Wow. Yeah. I’m like you said, it’s a radical act. I definitely agree with that. Prior to UVM, I did a lot of art school and all of that and I was kind of what my career path was going to be? Both: *laughing* Winnie: And then I really got into education. And I definitely did a little research, as a doc student, around artists and disability and the role that art played in their lives, right? And they all mentioned the community piece. They all mentioned like the, personal kind of self-care piece. So I think that’s fantastic, where you put that. Awesome. So I’m curious how… so can you tell us a little bit about your piece that’s going to be in the show with Inclusive Arts? Leah: The theme is cycles. Yeah. Someone sent me the prompt and said, “You know, I think you should you should consider this opportunity.” And I read the prompt and pretty much immediately started sketching. I think the idea of cycles is something that I have been really in the depths of over the last few years, and in particular the pain cycle. I was fortunate to work with a provider that helped me understand sort of the concept of a wave. So my painting is of a diving board sort of in the sky and this little figure dives off the diving board and sort of free falls and then tries to come together and get into a dive position and then dives into an ocean. “Cyclical Choices” (2023), by Leah Schulz. Displayed at the UVM Davis Center, Burlington VT. In the ocean, they split off in three different directions. One goes straight down to the bottom and they sink into sort of a meditative pose. Another direction they go is they ride that wave and they come up to the surface and they look around, and then they turn and they swim and try and ride that wave. And then the third is they turn and they climb and they climb back up the ladder and start ready to get back into that diving position. And so my piece is called “Cyclical Choices” and is really about that diagram that I have drawn over and over, over the last few years of saying, “Okay, we’ve got these symptoms. I feel like I’m in freefall because I have these feelings about it, I have these tools, and how can I get into that position of addressing those patterns?” And then I work through some of those and then more things come up and how do I address those? And sometimes you sink to the bottom of that a sort of lived there for a little while, and sometimes you can resurface and ride it out and get out of that pain cycle. And some...
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