Shelby Seier S3E141

Stuart Chittenden 0:01

This is lives, and I'm your host. Stuart Chittenden, my guest today is multidisciplinary artist, Shelby Seier

Shelby Seier 0:07

[Audio snippet] The most important thing is not to show your work or to complete projects. It is simply to show up to your own practice and to fulfill that innate fire within you.

Stuart Chittenden 0:22

Shelby Seier is an Omaha based disabled artist, cultural access worker and founder of all kinds accessibility consulting, where she practices access as an art form and a way to deepen relationships rooted in the Great Plains. Her multi disciplinary creative work spans improvisational quilts made from linens and pajamas to delicate drawings of beds and chairs, familiar objects of rest and care. Her background in theater and improvisational comedy informs her belief that accessibility, like art, thrives through responsiveness, collaboration and play. Seier’s work has been recognized with support from the Nebraska Arts Council. Amplify Arts, the Andy Warhol Foundation's Populus Fund, and an Access. Movement. Play residency at Movement Research, with support from the Mellon Foundation, Seier continues to reimagine how communities can create cultures of collective care.

Unknown Speaker 1:21

Shelby Seier, welcome to lives.

Shelby Seier 1:23

Thank you so much. I'm really happy to be here

Stuart Chittenden 1:27

This show, for listeners, obviously, is an audio medium, but that comes with its own constraints, and I wonder if you could help take us through a first exercise so we can make this show a little more accessible for other people.

Shelby Seier 1:41

Yes, happily, I've been nodding along as you were saying all of that. So I'm going to introduce the practice of a creative accommodation called a visual description, which is exactly what it sounds like. We are going to practice describing what we look like now. Looks are not everything. It's not the end all be all, however, our identities are absolutely going to inform the context with which we share today. And so I'll, I'll start a visual description, especially helps people who are blind, people who are low vision, or people who aren't, you know, looking and right now, that's everyone. That's a great equalizer. So I'm a woman in my 30s. I have blonde hair, it's pulled back today for ease. I am wearing glasses, that's an assistive aid, that's quite normalized, and I'm also wearing a mask. We're indoors. We're in a podcast studio. We're doing different things to clean the air, but I'm I'm covid conscious and virus aware as part of my disability identity, and you might hear that mask a little bit, but I think you know that visual thing may not have come up had we not taken the time to do this visual description, and it very much informs who I am and how I approach disability inclusion and it informs my own identity. Would you like to try giving a visual description?

Stuart Chittenden 3:09

I'd love to thank you, sure. So I'm a white man, balding, in my mid 50s. I too wear corrective vision, so I have glasses and not particularly relevant to my visual description, but I've worn glasses since I was a teenager, and I am sitting down. I'm probably three yards away from you. How this is set up? We both have microphones on stands in front of our faces. The room's relatively dark. There's black fabric on the walls as well as sort of white gray walls, just to dampen the sound so that we get good audio quality. Otherwise, visually, I'm just in pretty generic British expat clothing, I guess.

Shelby Seier 4:04

I can confirm.

Stuart Chittenden 4:07

Thank you. Pretty basic brown shoes and socks and khaki trousers and a blue shirt and a and a blue sweater as well. You mentioned as part of your description that you had some air cleaning elements here too. So what can't be seen is that I had a covid test earlier, and that tested negative. And also in the room is a small, I want to say it's, it's the size of maybe a pack of playing cards.

Shelby Seier 4:42

Thank you very good.

Stuart Chittenden 4:45

Yeah, so little white device. I'm curious about what that is. You mentioned air cleaning. So what is that?

Shelby Seier 4:50

Well, first of all, you did such a good job. And thank you for explaining the room that we're in. It's a fun room to be in, a unique room to be in. And what I have beside. Is a great little assistive aid tool called a Far UVC device. Far UVC is amazing technology that should be absolutely everywhere. Do you see? Do you sense the the ire in my voice, that it's not everywhere. I'm not a scientist. So there's plenty more to this. But to greatly simplify this device far UVC is a type of ultraviolet ray that's extremely safe for eyes and skin, and it's just this little passive thing that creates light rays that we cannot see, but that zap airborne particles kind of immediately. There's great potential for this to be used in restaurants, in congregate settings, in hospitals, in schools, and this is something that I'm very privileged to have. This is a an expensive tool that is an individual response to the to the climate we find ourselves in, but it's something that we all deserve, and we have this technology, and it should be ubiquitous. It should be everywhere. So thank you for asking about my my little companion here.

Stuart Chittenden 6:08

We've done such a good job of describing us. Now I want to invite you to describe yourself then. So what was your childhood like? What was your family context?

Shelby Seier 6:20

Great. Yes. So I was born in Omaha. My two parents are from Omaha. They met at University of Kearney. I grew up getting to do theater. We're very lucky that Omaha has, at the time, it was the third largest children's theater in the nation, which was a real feather in my cap, the rose theater. I spent a lot of time there. I went to Catholic school. I got to go to University in San Antonio, Texas to study theater. But my childhood was a lot of creative play and a lot of just getting lost in craft and spending hours and hours sorting my bead collection and making scrapbooks with my sister. I grew up with one set of grandparents in Omaha, and they were extraordinarily influential in my life, and they helped with caregiving and babysitting and my grandma, who's still alive. Hello, Joanne, if you're listening. She is an incredible seamstress. She no longer practices sewing, but I got to experience through osmosis her incredible aptitude at whipping up a project within one sitting. She she was so generous with her materials and supplies, and with her encouragement, that I would do my own little embroidery projects on the side, or, you know, tinker away, sorting her buttons or just digging through her hoards of fabric. I also really enjoyed snooping, and I still enjoy snooping. You're a curious person, so you might get it, but I love stuff. I love what we choose to keep. I love items with histories, and so, yeah, a lot of my childhood was just like spent opening drawers in my grandma's house and organizing her closet and finding an object and being like, what is this? Where is it from? Can I have it? And that is really reflected in my art, because in a show that's currently up, I tried to reward snooping by hiding little messages here and there, especially in the tactile works. What else about my childhood? I look back on my childhood and and a lot of my needs were not met, and that's not for lack of trying from the adults. It's from a complete lack of awareness and a complete lack of accurate medical care and access to medical information that could have really made a difference in my quality of life and how I experienced friendships and how I experienced navigating school. So, yeah, it was a mixed bag in childhood.

Stuart Chittenden 9:24

You are preempting a difficulty that I was having for myself coming into this conversation, which was navigating these twin elements of your life, that as an artist, and that is someone who shares being chronically ill in different ways. You live a life where these elements of who you are are intertwined, and you explore them and navigate them accordingly. It made me wonder, well, where do I start with a conversation like this? Because, on the one hand, you don't want to be defined as. As an illness. But then again, many of us don't want to be defined by the thing we do. So perhaps the truth is, these elements of who you are, maybe don't define you, but also are integral to how you've experienced life. With all that being acknowledged. I'm wondering if a place to start is for me to ask, When did you first get that inkling that there was something that was physically awry that was unexplainable to you?

Shelby Seier: 10:33

Great question. First off, I'm okay with being defined by my disabilities. I'm okay with and even welcome being defined as an artist. A lot of times there's a language emphasis on saying no, no, no, no, no. She's a person with a disability, but with implies relationship. And sometimes I feel like I'm in relationship with my disability. Sometimes I feel that it is this thing that is kind of sitting beside me. But more often than not, my disability is is really running the ship. It is determining what I can and cannot do. It is the core through which I navigate relationships. It is a cultural identity and a cultural experience. And so I have no problem being defined by by my disabilities, because so many people before me have done the great work of normalizing disability to allow me to step into this identity and step into this medical experience without shame. Now, shame comes from all around but when I think of my own disabilities, I don't feel shame about it because it's so normal. So many people experience disability. It's a it's a universal life experience that most, if not all, people will touch on to varying degrees. So that's my Preface. I love this question, and I think I probably knew a long time ago. I think I probably knew in my early years, like this is a mismatch, like I cannot keep up in school. The level of stress I'm experiencing as a kid is because of my physical experience and how difficult it is for me to keep up. But without that mirrored back relationally, it doesn't embed itself in the body, mind of aha, this is when, but I can say that I had a real onset of illness my sophomore year of college, and it was a point of no return, where it's like, I cannot keep up anymore. This is a very acute before and after, and that was, you know, over a decade ago. And now that I have information, I have diagnoses, I have community, I'm embedded in the disability community, both online and in person. Online is in person too. But you know the distinction I look back and it's like, Oh, I've always had this and different things made it worse. But this explains so much, my God.

Stuart Chittenden: 13:26

You mentioned diagnoses. Could you just tell me what these diagnoses are?

Shelby Seier: 13:30

Yeah, so I have a real fruit basket of diagnoses, which is pretty common for what I have. If listeners are curious. Something interesting to use in a search engine is the super pentad, which is an emerging theory about this constellation of diagnoses that is very present in the type of disability I experience so much build up drum roll so I have my primary disability is myalgic encephalomyelitis or me, which is inaptly also known as chronic fatigue syndrome, which just doesn't cut it in terms of explaining the neuro physical experience of This illness, which is quite understudied and underfunded and misunderstood, along with myalgic encephalomyelitis, I have all sorts of other things that that happen alongside this disability, like dysautonomia, which is dysfunction of the autonomic Nervous System. I have all sorts of hormone issues, all sorts of gut dysbiosis that I've worked through and tried to heal. I definitely have neurodivergence, endometriosis, scoliosis, other ‘osis. And it's just this big, complex case that a lot of doctors don't get a lot of training on. A lot of it is genetic. So I also have, like, a hypermobility disorder, and that's theorized to be genetic, and so much of it could be somewhat dormant, or, you know, maybe more manageable, but if you get things like a virus, if you have a head injury, which I did in the fifth grade, if you experience stress, acute stress over a long period, it exacerbates these things to a degree that makes it very hard to manage. And so what I was trying to say earlier is that interestingly and horrifyingly, this constellation of diagnoses and illness presentation is skyrocketing due to the ongoing prevalence of covid 19. So this virus is wreaking havoc on people, and they're not now left with things like dysautonomia, they're now left with an exacerbation of hypermobility disorders that was otherwise just fine or just managed. I experience a lot of collective grief, because I don't want anyone to experience what I have, and it's happening at a unmitigated pace, and then oftentimes people who experience this are bereft of care, are bereft of resources to treat it. So it's a big jumbled knot. And I do have hope that science is accelerating at a rate because of the pandemic that will offer relief and treatment. There's so much more awareness of what these things are now than there was a decade ago when I first was seeking care for them.

Stuart Chittenden: 16:49

So we'll dive into the consequences and implications of this a little further, but but to connect this then to this other element of who you are and how you encounter life, you talked a lot about the artistic expression that you embraced as a child. So what was it around that time that made you realize, oh, I am an artist. I want to pursue art. This is more than just playtime, which is great, but it's more than that to me.

Shelby Seier: 17:21

You know, I didn't identify as an artist until a few years ago. Really, I didn't think that I was capable of visual art until I tried it in 2021 and 2022 which is when I first started quilting and drawing respectively. But for most of my life, I was a theater person. The art that I was doing, I considered a craft, which I think is quite gendered. I agree with you, I was nodding along that it's not unique for young girls to do this practice. All of my friends were doing it, my sister and I did it together. It was a way that we spent time together. And so I always identified as creative. But I think my self criticism, or my hesitancy to identify as an artist was a kind of like an immaturity. I had to go through a lot to give myself permission to come out as an artist, to be an artist, to say, You know what, I'm gonna apply for that grant that's visually arts based. There's a huge gap because, you know, for a long time, my identity was about theatrical arts and about performance, and that became inaccessible to me in college with the onset of my of my acute disability. Being a theater person is so much of it is about being reliable and about showing up on time and having your lines memorized and being able to do physical things, and I lost that, and it was very chaotic when I lost it, because I was in the middle of a show, I was in the middle of a musical, and it was like very dramatic that I couldn't perform In the ways that I had signed up to perform, and that was a real affront on my identity, and as I experienced illness and sought care that became my full time job, and I just had absolutely no energy, and so I really lost that creative part of me, and in retrospect, not having a creative outlet made me sicker. My God did it made me sick sicker. Because if you have that impetus in you, if you have that drive, the most important thing is to let. Cut it out. The most important thing is not to show your work or to complete projects. It is simply to show up to your own practice and to fulfill that innate fire within you. And I wasn't doing that, and I got sicker and sicker due to a variety of things, but especially because I wasn't engaged in any sort of art or creative practice, and then I finally gave myself the outlet, and that's when I thought, Ah, I think I'm an artist.

Stuart Chittenden: 20:31

You touched on this a little, but I just want to quickly if once you became sick during college and that particular pathway seemed to close off in many respects. For you, I'm just wondering about feelings of grief, anger, denial, this kind of thing. I'm just I'm just wondering what that was like for you.

Shelby Seier: 20:53

I'm so grateful that you're asking about this, my experience of having a body, of being a person inside of a body, was one of extreme frozenness, of extreme denial, of extreme separation of thought and body for most of my life, even With the onset of disability as a sophomore in college, I didn't allow myself grief. I didn't allow myself to feel upset that this was happening to me, or to feel the the intensity of the unknown of not having diagnosis at the time and not having any sort of framework for what was wrong, of which many, many things were going wrong. And I think my lifetime of that disembodied experience absolutely fueled the onset of my disability. The greatest stretch of healing I've had lately is in embodiment. Is in understanding how my emotions impact my my abilities and disabilities and my health. My greatest relief in the past few years has been analyzing the ways in which I was codependent or a people pleaser, a little Midwestern Catholic school people pleaser, and how that made me sick. I didn't acknowledge my grief until I was doing this weird one off improv paid gig in Omaha, which is rare. It's rare to get paid to do improv in Omaha, there was a man, and I forget his name, but I'm really indebted to him, and he's a theater person. He teaches theater. He was a director. He said, Wow, you had to give up theater that's so sad, that is so awful. And nobody had ever done that to me before. I yeah, I keep on mentioning relationships, but that mirroring within my lack of skill sets at the time, that mirroring really gave me permission to acknowledge what I lost, and to acknowledge that, yeah, I thought my life was going to go a certain way. This is a huge gap. This is a huge hole, and that that opened up new processes for which to explore just how awful disability can be in terms of loss and in terms of ineptitude and can't like the DIS part of disability is so crucial. There are things I cannot do, and I need people to understand that, and I need people to honor that. And so, yeah, it's the grief is ongoing too, like I'm not going to magically just be okay with not being able to pursue theater. I don't want to give the impression that, you know, I abandoned theater. Theater abandoned me. It was still there, and I still had my foot in that world, but it was in a much different capacity.

Stuart Chittenden: 24:05

So I'd like to talk about your current artistic practice, and maybe a good way to begin that conversation is to use your exhibition on hold. That's the title on hold. It's produced by LaLa, and it's on display at the Alley Poyner offices in their lobby area. I wonder if you might just describe what that exhibition is like.

Shelby Seier: 24:33

Yeah, so you walk in and there's glass doors and there's a second glass facade entrance that you pass through. And to your left is a nice little display about what LaLa is as an organization. And then there's a wooden ornate mirror that has some text adhered to it in cobalt blue vinyl. And this text is meant to mirror a voice message that you might leave on a phone or a podcast. And then there's a few drawings along that wall. And then there's a big stretched quilt top that is a classic quilting pattern called House top, and it just looks like houses. So there's six houses on that stretched quilt top. And then you turn around and there's a big display, another ornate wood frame that has an improvised quilt inside of it that uses a lot of cobalt blue and little squares of various fabrics. And it has a bunch of plants at the base and a lot of candles and then a lot of trinkets. You noticed that all of the little glass animal figurines on this altar space have impairment, so they're all disabled. I'm glad that you noticed that. I don't think anyone mentioned that at the opening, so I was pleased that you noticed it. And then there's Yeah, you turn a corner, and there's another big stretched quilt top and a lot of framed drawings of beds and chairs. And then you go through another set of doors, and there's more framed drawings, and some of them have 3-D printed, tactile replicas of the work to offer access to non sighted people, to curious people, to sensory seeking people, or to people that just want to get their hands on something. There's also a completed quilt that is hung up in the in the previous space. But mostly I make stretched quilt tops, because I don't have energy to make a full quilt like making a full quilt is really intensive. There's a lot of wrestling of fabric and getting up and down off the floor and stitching and pinning and stretching and yada yada. And so I stretch just the top and I don't do top stitching, and I stretch them over wood frames using a staple gun, and that's the way that is easiest for me to complete a piece.

Stuart Chittenden: 27:10

Here's a quote that I heard you share with an interview. I think it was Omaha magazine. And you said, I sew without a plan, and let the fabrics speak to me. They tell me where they should go. And so I wonder if you wouldn't mind talking a little bit about the kind of relationship you have with the kind of dialog you have with the material that you use.

Shelby Seier: 27:33

Yeah, happily, well, I'm I'm glad to report that this is not an isolated experience. This is quite common with fiber artist. I ran into Celeste Butler, who's another quilter in Omaha, at creative reuse, and she said the exact same thing the materials talk, you just have to listen. There's another quilting friend I have, Ren Riley, who lives in California, who said the exact same thing without us prompting each other. And so there's a great relief in that phenomenon. All you have to do is be present and listen. It does take some honing of the practice of just being present with your materials, but once you tap in, there's a stress relief and there's a great freedom in just being like, okay, I'm going into the studio. I have an idea maybe, of what I want to do, but I don't need to fret. I do not need to worry it's going to happen. One of the only ways I've figured out how to practice mindfulness is to get pretty tactile and and to drop in and listen to the materials. It is one of the only ways that I can experience flow, which is a blissful state that is really nourishing to get to experience.

Stuart Chittenden: 28:54

If you go to this exhibition on hold, there are pieces that invite you to feel them and touch them and get us a sense of the actual material itself. What is it about that that is important to you?

Shelby Seier: 29:09

Having a sensory component to visual art is crucial because it fulfills my obligation and desire to make creative accommodations, to understand that life is not a universal experience, and to welcome in people who are previously excluded from spaces or just have no interest in being there because, you know, there's nothing for them. And it also is a little bit selfish, because it honors my trajectory in understanding art and viewing art. I didn't know how to view art for a really, really long time. I knew that I liked it. I knew that I liked the experience of going into a cool building that was quiet and walking through galleries. I knew it was important, right? I knew that, like, ooh, to be in a gallery is important. But I didn't know how to look at art. I didn't know what it meant to me. I didn't know how to have a conversation with art. I didn't know how to let it permeate my being. And so involving the senses is something that I think Western cultures are really bad at I'm always growing in that regard. We're a primarily like text based, visual based culture and society that's the dominant culture. And so not only is, you know, a tactile replica, offering access to non sighted people into sensory seekers, but it's it also slows people down. Art is is a way of combating the attention economy that is so fueled by what the phones are doing to our brains, right? And so if you're holding a tactile replica of the work, but you're also looking at it, slows you down. It gets you off your phone because your hands are occupied holding the object. It's also a way to interrogate the art in a way that is otherwise completely off limits. So there's little tactile sketches of fabric in my show, and you turn it around and it's sloppy, like there are matted bunches of thread, and the seams are wonky, and nothing like meets a right angle anywhere. And what I want to show people is that I'm not a machine. I'm not a robot. A real person made this, and you can too, like, I want to show that the back of my art is messy and the front is messy too. But like, I want people to hold that and just be like, I could do this. Oh, this. This demystifies the whole thing a little bit more, because what happens when, when we're at a distance? Distance from the art. Is it? It makes it almost impenetrable. It makes it an illusion. I just want people to be creative, and hopefully holding and touching things is a means of getting people there,

Stuart Chittenden: 32:25

Back to our visual descriptions and of each other. This is a judgment on my part, so I'm making comments about you that you're not making for yourself, but you appear well presented, pulled together, sophisticated, ready to be seen in public.

Shelby Seier: 32:41

Keep going. Thank you. You don't say…

Stuart Chittenden: 32:45

But you've already told us that inside there are aspects of your physicality, and therefore how you shape your emotional and psychic well being too, that are just invisible. And in many ways, they're invisible to you too, but they're invisible to certainly to me. And so there are these two sides, and I feel like, as you're describing this piece, that the surface presents in a certain way, but as soon as you turn it over, you realize it's a jumble. It's a mess. There's no good right angles. One might even question, do I know what I'm doing here, but, but if you look at the other side, no, there's art here. There is something real. And I just don't know if you ever think about it in terms of, you know, that kind of metaphor that, how it represents you.

Shelby Seier: 33:27

Oh, I love this so much. It totally does. Yes. Within the accessibility world, what you're describing is invisible versus visible disabilities. We have evolved in the language a little bit to now call it apparent versus non apparent disabilities, because I'm trained, because I spend a lot of time with disabled people, because I know my body mind so well I could tell you, Well, there's a lot of things that I didn't describe that could totally clue us into disability. So I did describe my mask. I think that that's a current indicator of, you know, either awareness of data and science and risk analysis, but it's it also cues that, you know, I have vulnerabilities. That's not universal. Some people mask and they're not disabled. But you know, my cuticles are I picked my cuticles. I'm doing that right now. My legs are tightly crossed. That's a pain management thing. That's because my muscular skeletal system is messed up. And so I'm like bracing myself to sit in this chair. You know, my hair isn't done that well, because I just didn't have energy this morning. And so I love that you connected the dots between tactile work and the front versus the back and the presented side versus the demystified side. And so much of my work is rooted in demystifying the disability experience and bringing the non apparent things to the forefront, and I find that there's clues all around, right? Like, you know, the way a person leans against a wall could indicate disability. The size of font on someone's phone screen can indicate disability. Disability is everywhere, but similar to looking at art, are we trained to be ready for it? Are we trained to meet the moment? And I find more often than not, we're not. And so a common creative accommodations are just one tool in teaching us collectively to get more curious, to touch, to feel, to explore, to understand, yes, the hidden side.

Stuart Chittenden: 35:54

Not just artistically, you advocate for a better designed, more thoughtful landscape in which we live our daily lives. What is it you do in terms of that kind of advocacy and education?

Shelby Seier: 36:09

I'm concerned with making people, programs, policies and places more accessible. So yes, it's about the parking spaces, but it's also about, how are we formatting the agenda for this meeting? Is there ample time for people to think? Is there ample time for people to communicate on non normative timelines. If people are communicating in non normative ways, how are we accommodating that? What awareness do we need to bring? What training do we need to bring? So it's multifaceted, and as a kid, I was very shy about owning what I wanted to be. I was a very serious child, even though I loved having fun and I was always doing bits and being silly and doing characters, but I had this very adult mindset, and I I somehow picked up along the way that being a ballerina or being an actress was a far fetched idea, or being an artist was untouchable. So I was very shy and reluctant to even claim a future career, and also, who wants to work. But I did say to my mom, like, okay, when I'm when I grow up, I want to be in theater and I want to be on stage, but I also want to help watch people's kids, of the people that are helping on stage, and then I also want to help with costumes, and I want to help with set and I'll also help with makeup design. Makeup design, and so I've just always been interested in everything, and consulting is a medium that allows me to drop in on these wonderful worlds that I otherwise would have no access to, and figure out, okay, how do we make fruit picking for a food justice nonprofit in LA more accessible to volunteers. Oh, my God, what a fun puzzle. And so, yeah, I'm just very lucky in that I get to drop in and use relationships as a means of making accessibility. And my practice is one where we're not repeating the same solution over and over, because I think that good accessibility is highly contextual. It's based on the capacities and the access needs of staff and volunteers and people who are stewarding the accommodations that I suggest. It's based on weather, it's based on resource availability, it's based on so many different things and so, yeah, I'm just a little detective problem solver, like the solutions are coming from me, but they're mostly coming from the people that are embedded in these places and programs.

Stuart Chittenden: 38:51

I love that vision of you as detective sleuthing out effective contextual accommodations. But I wonder, too, if maybe how hard it is for you to encounter a world that is apathetic or disinterested in only the work you do, but I would imagine in some regards you, you, at a quick glance, look ready to go, as we were talking about earlier, and that may very well not be the truth. But at this point, my detective interest is done, and I am now disinterested in whether or not you need a chair. You need things to go slower, or you don't have time to think, or, I don't know, maybe it feels like Sisyphus. You're constantly pushing this boulder up here, only to watch it come back down again. And yeah, I don't know what that does to you as an individual.

Shelby Seier: 39:47

Stuart, you are good at cutting, cutting, cutting into the heart of things which I love. I feel very comfortable in this place of deep inquiry and just getting to the heart of the matter. So it means so much that you've observed and extrapolated so many things that I want to talk about and think about at a deep level every day. So thank you for this space. It's heartbreaking. It's a very weird position that I've put myself in to be the example of disability for a lot of people, to be the conduit through which they learn about access needs and disability, through which they learn about ableism. I think that is tied to my religious upbringing somehow, maybe you know how, but I haven't quite figured out that jumbled, not yet, but yeah, you know, even in producing the show that's currently up on hold, it was so hard to both be the artist making the work and also the access coordinator. And it is so hard to be a disabled artist in Omaha, and people know that I'm disabled because I lead with it, intentionally and politically, that is a very conscious choice for me to be out and loud about being disabled, it is very heartbreaking and exhausting and discouraging to constantly remind people of my needs and to be the one advocating but also needing the thing. It's very hard to see solutions because of the skill sets I've developed that are so indebted to other practitioners in the accessibility field. I'm not the only one doing this. There's so many great people who have informed my work, but yeah, it is so challenging and discouraging to to see what needs done and to ask for that to be done, but to also be the person that has a lot of knowledge about how it could be done, because it gets extractive very, very quickly, and that's a balance that I haven't figured out. I also think that I'm intentionally not looking at that aspect of my life, because it is so sad and it. Is there's so much work to be done, we don't learn about disability history in school. Ableism is not often at the table when we're talking about diversity, equity and inclusion. It's the thing that often gets left out. However, disability is an identity that cross cuts every single other identity. It is so common, at least one in four adults in the US have a disability, if not more. Disability is not just a medicalized experience. External conditions are disabling if you're fearing for your safety, of which many people today are all the time, that's disabling, regardless of your diagnosis. If you're sitting in traffic and need to go to the bathroom, that's disabling. If there's a lack of public bathroom access, that's disabling. If your health care costs are skyrocketing, even if you're not using it all that much, that's disabling. If your water isn't clean, that's disabling. So it's so pervasive and and these frameworks are not ones that are common or practiced within group settings or institutional settings. So yes, to answer your question, it's very difficult. What I find fuels me is being in relationship with other chronically ill and disabled people, or being in relationships where I can talk about my access needs, and it's not a burden and it's not punished, and that keeps me going and keeps me afloat. And again, my material needs are met. I'm housed, I have food, I have heating I have clean water. That all makes it easier to be in this position and to do my job. I think without it, it would be a grind that I'd be unwilling to participate in, because why subject myself to ableism all the time?

Stuart Chittenden: 44:10

What have you had to unlearn?

Shelby Seier: 44:13

Ooh, everything. I mean, I grew up, I still struggle with perfectionism that's rooted in ableism. Ableism. There's many different definitions of ableism, but it's the assumptions about what a body mind can and can't and should do. So I'm always unlearning perfectionism. Perfectionism is tied to capitalism and the ways in which we are supposed to perform and serve money making apparatuses. So I'm constantly unlearning that early in my career, a lot of my feedback felt very young. It felt very led by an over achiever that was still inside of me that needed to be unlearned. Early in my career, I was I was very much like we should do everything all the time. We should make it as accessible as possible. And now I'm like, hey, what's what's actually possible for us? What would make you love accessibility? What would make you have fun with accessibility? It's going to be hard. This work is very hard. I'm not going to lie to you, but what are you curious about? Like, how can we how can we use curiosity as a fuel? How can we find what you're interested in to make you commit to accessibility every day, because it's a constant practice when done well, so I've had to unlearn perfectionism. I've had to learn all sorts of imperialistic and Western teachings in school about the American apparatus, an empire. I think hopefully a lot of us are constantly unlearning that Western dominance that was thrust upon us in schooling. I've had to unlearn ableism. I think that my relationship to ableism is so deeply embedded that it it will take my lifetime to unlearn it. I am constantly ableist towards myself. I am constantly thinking, you know, even with all of this work that I've done to accept my disability, I'm constantly chastising myself for not making it through my to do list. So I'm unlearning my relationship to productivity. I'm unlearning that my worth is tied to what I make and do rather than just being and then I'm unlearning convenience. That's a hard one. Convenience is really nice when you have a chronic energy impairment, and yet my politics are such that I really believe in interconnectedness. It's not even a belief. It's undeniable. We're all interconnected. But my desire, my leaning toward convenience, is. Could be disabling, and is disabling for other people, and it's disabling for the environment, and it's disabling for all sorts of ecosystems that are hidden from me and that feel far away. But I've been thinking a lot about, you know, my plastic consumption, and how that is disabling our planet, thinking about where our food comes from, and and my, yeah, my ties to convenience culture and how, how I can lean more on interdependence rather than convenience.

Stuart Chittenden: 47:41

I like to ask guests, for them, in their interpretation, what is the meaning of life?

Shelby Seier: 47:50

Oh, gosh, the meaning of life is to connect with other beings, to be delighted by a spectrum of things, even the smallest glimmer to the grandest natural landscape. It's to never arrive, to constantly be curious, to keep learning, to, you know, peer under a rock and see what's what's hidden underneath. To never think that one has arrived at, you know, any sort of like self understanding or or concept. I think the purpose of life is, is both to be still, but also to engage in a constant evolution and to be able to hold disparities. I just said to be still, but to constantly evolve. How do we do that? That's the purpose of life.

Stuart Chittenden: 48:47

My guest today has been disabled artist Shelby Seier. Thank you so much for being on the show.

Shelby Seier: 48:54

Thank you. This has been a total treat.

Shelby Seier: 48:57

Lives is brought to you by KIOS Omaha Public Radio, and is produced by your host, Stuart Chittenden, an existential coach and humanist thinker. Learn more about his work at stuartchittenden.com The music you hear playing in and playing out is performed by Andrew Bailey. Podcasts of today's show and others can be found at lives radio show.com or wherever you get your podcasts. If these conversations matter to you, please consider supporting the show. Members get early access, unabridged interviews, bonus readings and more. Find the membership tier that fits you at lives radio show.com forward slash support. Join us next week as we delve further into the practical and profound possibilities of living well. Thanks for listening.