In the sixth episode of Disability Bandwidth’s second season, we spoke with Olivia Muenz, a disabled writer from New York, about her personal journey toward receiving a diagnosis and how her disability has influenced her writing. Olivia shared with us her experiences of how her disability has shaped her perspectives and motivated her to pursue writing as a means of expressing herself. We delved into Olivia’s use of an academic lens to explore disability in a unique and artistic way. Our conversation with Olivia was inspiring and enlightening, and we hope that our listeners find her perspectives on disability to be as engaging and thought-provoking as we did.

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Transcript

[00:00:00] (Music)

[00:00:05] Nikki Nolan: Welcome to season two at Disability Bandwidth!

[00:00:12] Sam Proulx: A show where we talk with experts in disability about their journey, life, and inspiration.

[00:00:16] Nikki Nolan: I’m Nikki Nolan.

[00:00:17] Sam Proulx: And I’m Sam Proulx.

[00:00:18] Let’s get started.

[00:00:21] Nikki Nolan: Do you mind introducing yourself?

[00:00:22] Olivia Muenz: Yeah so my name is Olivia Munez. I’m a young woman with brown hair. My hair is in a ponytail right now. Light skin, brown eyes, and have some books behind me as usual. I’m a multiply disabled writer, and I study critical disability theory as well.

[00:00:43] Nikki Nolan: Awesome. And how would you describe your role?

[00:00:47] Olivia Muenz: I’m in an interesting period in my life. I had recently received my MFA in creative writing and I stayed on to teach for a year, and I just moved back to New York. So I’m working for a sculpture artist and continuing to write.

[00:01:09] Sam Proulx: Nice. Anything you’ve written that’s come out recently or something that you’re working on writing that you’re kind of super proud of and excited about and thinking hard about?

[00:01:20] Olivia Muenz: Yeah, so all of my creative work is on disability and I tend to focus a bit on my lived experience. I have Ehlers-Danlos syndrome (EDS), and I focus a lot on the intersection between gender and disability. I’m also an experimental writer, so I like to think a lot about form and its relationship to the body and embodiment.

[00:01:44] Right now I have a chapbook that came out from Essay Press, so that’s currently available called, Where Was I Again? And a full length version of that book is going to be published. It’s a poetry collection but it’s a bit hybrid. And I wrote it after my first year of my MFA program.

[00:02:08] I didn’t have much opportunity to write outside of coursework that first year, which was a really big fear of mine before coming in because my fatigue is pretty severe. So I often don’t have the capacity to sustain thought and writing, which is difficult for a writer. So I was very excited for the summer when I had a full schedule and could maybe write more.

[00:02:36] And then I became bedridden for a few months and it was at that moment that I realized that I had been accommodating my physical impairments without question. But when it came to my cognition, I was trying to make it right neurotypically and I wanted to write clear sentences. And so I experimented with letting my brain write in whatever way it wanted to write.

[00:03:04] And it came out very easy. I wrote it in a very short period of time and it replicates that more associative way of thinking that I have that was augmented by the medication that I had to take at the time. So I really loved that book and it was the first time I wrote anything. Not despite my disability, but because of it more than just content, actually in the style and form and all of that.

[00:03:31] So that is coming out in March. And I’m also working on a lyric memoir that is fairly expansive on my ten year search for a diagnosis that really focuses on gender disability, the history of gender disability, particularly through the sexist experiences that I had in medicine and trying to get diagnosed and where that comes from.

[00:03:57] And so I look at that through the nature of my personal archive of my medical records and through my ancestral archives, to kind of weave in this history of America’s particular origins of healthcare. It’s very colonial origins and is considered just like the nature of no ability, especially when you have something like a clinical diagnosis.

[00:04:19] So I’m trying to finish that.

[00:04:21] Sam Proulx: Yeah. And it’s super interesting that you are writing and thinking a lot about these topics around gender and disability, around intersectionality, around kind of critical disability theory and expressing them and portraying them through the realms of poetry and creative art and creativity and storytelling.

[00:04:47] Because something that I’ve noticed, and I wonder about your thoughts on this, is that the academic community of people with disabilities does a great deal of important thinking about disability and identity and representation and theory and intersectionality in all of these things. But there is a kind of disconnect between the greater disability community and the academic disability community and that dialogue sometimes doesn’t seem to flow back and forth, maybe in the way that we would ideally like to see. Is that something that you’ve noticed and do you feel like what you’re doing is sort of part and parcel of that or is it just a kind of creative expression?

[00:05:45] Olivia Muenz: Yeah, that’s an interesting question. I think academia is a very isolated world in general. So comparatively between other disciplines, I’ve found critical disability theory to have the most stylistic flexibility. A lot of first person narratives that seem to be more dominant than any other area of theory that I’ve read, which I’ve found very interesting.

[00:06:16] But now that you say that, I do think there is that disconnect. And I’m not sure why, because it’s something that I was really drawn to. I think sometimes, what I notice in disability theory is things become speculative, and it turns sometimes into an intellectual exercise rather than something that’s more oriented towards disability justice.

[00:06:46] And that might be a contributing factor. But I think there might also just be something in the nature of survival of disability that doesn’t exactly leave room for these more intense, like intellectual frameworks that have to dig into systems and all of that when you’re just trying to get your medicine that day.

[00:07:09] I found before, especially before I got a diagnosis, so much of my time was spent in online communities working towards that diagnosis on my own. And I didn’t have time as much to think about the social implications of disability or anything else within disability theory.

[00:07:29] Sam Proulx: Yeah, I, I think you could be right and I think you could have a point, but it’s just a thing that actually occurred to me a while back. When I was sort of noticing around the kind of covid pandemic, there have been a lot of doctors very focused on breaking it down and communicating their kind of academic pursuits to lay-people.

[00:07:47] And then in the same way, we can all think of Carl Sagan, the kind of popular science communicator we can think of as the popular social science communicator. We can think of people who, I dunno, literature or Shakespeare.

[00:08:04] Or whatever. And sort of communicate these in popular, accessible ways. But I can’t think of, and this could exist and maybe I just haven’t seen it, but like a popular disability studies communicator who’s breaking down the theories of the model of disability or any of these social implications and the thinking that’s going on for people who may need to get their medicine and just don’t have enough the energy to attend a master’s lecture, right?

[00:08:35] Olivia Muenz: Yeah. Yeah, I mean, I think the change that I’ve seen in a more, broad understanding of disability has been pretty significant since I first started engaging with it. And maybe like over a little over a decade ago. And I do think there, there is more public understanding of ableism in general, that it’s been more commonplace to see from any person rather than just disabled people, which has been a shift.

[00:09:08] But it has also been fascinating to watch Covid. I think a lot of other disabled people, especially chronically ill and just people that are isolated more or immunocompromised, or especially people with CFS [Chronic Fatigue Syndrome] or CF [Chronic fatigue] like conditions had like the experience that my life was fairly unchanged, especially in the beginning of the pandemic.

[00:09:32] I am isolated a lot of the time and long Covid has existed as CFS long before long Covid existed. But there has been that distance between people with long Covid to kind of insert themselves into this larger disability movement, which has been a bit confusing. Yeah, I don’t know that doesn’t give an exact answer to your question, but I think there’s a relationship there.

[00:09:57] Sam Proulx: I wonder if it has to do with the shame around the word disability, right? You can say you have long Covid and you don’t have to identify as a person with a disability. And I think some people still feel that shame. But I’m glad it’s not me. I mean, this is really coming from my experience.

[00:10:14] I did not approach my disability from a disability studies perspective and from an academic perspective. I approached it from, I work at Fable in the corporate world and we’re here making things better. I got exposed to it that way. But before starting at Fable, I couldn’t really articulate the social model versus the medical model.

[00:10:34] And we interact with people with disabilities every day who can’t. And yet it’s such an important thing. I don’t know. We’re way off topic now, and so we’ll bring it back to you and what you do. But your work makes me think about these things as you talk about it.

[00:10:49] Nikki Nolan: This is so interesting. Keep going.

[00:10:52] Olivia Muenz: Yeah, well it, that too just reminded me of the reason why I write creative work rather than academic work. And I do value academic work obviously, and I would still do that, but I do like the filter of literature rather than something more academic. And I don’t even know if it’s really about accessibility.

[00:11:17] It just feels more representative of the experience of being disabled than, something that’s a little more distant

[00:11:27] Sam Proulx: Yeah. Some of it maybe comes into not wanting to see ourselves as academic artifacts of study. There is that feeling sometimes when you’re engaging with a paper published by a disability studies program.

[00:11:40] Nikki Nolan: Interesting. I haven’t even thought of that. I actually, as a child, was studied very frequently by academics for my disability. Like they’d put me on medication and then make me do tests and stuff like that. And so I have a very strange relationship to like disability and academia and actually being a test subject. Which has infiltrated so much of my life of feeling like I was a pariah or like I was something that needed to be studied or that I was different or other.

[00:12:08] Sam Proulx: Yeah, and getting back to what Olivia was saying about the amount of change that we’ve seen over the last little while. Like if you really think about it, it’s only in the last 10 years that we’ve changed from test subject to participant, even just that change in language.

[00:12:24] Nikki Nolan: Or just even being involved. Even just going into how product design has evolved, where it was people used to just building things and now we’ve evolved to include people who were actually doing the things. So much of the world has evolved since I would say 2009.

[00:12:41] But I’m gonna pull us back in. What we’re really curious about Olivia is, what lights a fire in you? Like what gets you out of bed in the morning?

[00:12:49] Olivia Muenz: It’s an interesting question because if we’re phrasing it and what gets me out of bed in the morning, I feel awful every day when I wake up, you know? So much of my life feels like survival. And so I try to carve out value and pleasure where I can. And for me, that’s always been art.

[00:13:08] But more importantly it’s been disability representation and art. And having that kind of meaningful change for the condition of my life and for other disabled people has been really important. And I move between how directly I wanna engage with disability justice. I do think I would like to work more actively at a disability rights organization or something like that.

[00:13:30] There’s some capacity within art to have meaningful change. It’s very difficult otherwise that I really find value.

[00:13:38] Sam Proulx: As we talk about art, recording this at the beginning of a new year, and all of the stories that have been in the news recently around image generation and text generation and AI and all of this stuff. I am curious how you, as someone with a disability, and as someone who does struggle with energy levels and fatigue and things, think about this because I’ve heard from a lot of people, many of them not disabled, that these AI tools can be hugely beneficial to folks who don’t have maybe the energy to write all that they would like to write. The AI kind of fills these things in for them or helps in the creation of images, things like that.

[00:14:29] And yet there’s this pushback that it’s not really art and it’s kind of not great to use these things, interact with these things. And so I’m wondering, have you interacted with these tools and how do you feel about them? Do you feel like they could be an adaptive help for you or something that takes away from your being and from your creative process?

[00:14:55] Olivia Muenz: Hmm… I was just looking at this yesterday. I was trying out that AI TikTok filter. I really don’t have many thoughts on it. I don’t think the way that I write is fairly singular. I’m pretty voice driven and I’m a bit odd and I know that, and I can’t imagine AI being able to replicate how I sound because I don’t even know what I’m saying half the time.

[00:15:22] And for me, the content of the thing is at best half of what I’m doing. But I’m so much more concerned about the way language sounds. I’m very line level. Cause I started as a poet. So even if I’m doing narrative, the way something sounds and the language and the combination of everything together is more important to me.

[00:15:43] And I can’t imagine, like, for example, my poetry book only uses a period as a point of punctuation and it disrupts the sentence at the line level and creates this very disjointed thing that’s supposed to be disruptive and functioning like a fulcrum to pivot into something more associative rather than a building block.

[00:16:06] And I can’t imagine a computer having the capacity to engage with the meaning and content and understanding of what that is and then replicate it in language in an interesting or beautiful or whatever way.

[00:16:19] Nikki Nolan: It reminds me of Gertrude Stein. All of a sudden I’m thinking of Gertrude Stein’s writing.

[00:16:26] I don’t know. It’s really, really, really interesting. I don’t know if that’s a reference for you, if she’s a reference for you.

[00:16:32] Olivia Muenz: Oh yeah. I had to write an imitation of something in college for a class and I did an invitation of Tender Buttons and it did a whole additional section and it was the easiest thing I’d ever done. And it opened up this entire new world of poetry writing for me, leaning into that, that verbal cubism and the stream of consciousness and all that.

[00:16:57] That was a huge reference point and I think I kind of kept it on the back burner and just reengaged with it in this new way.

[00:17:06] Nikki Nolan: That’s so cool. That leads really well into our next question, what are some of those key moments that led you to this place?

[00:17:12] Olivia Muenz: Yeah, I think I’m kind of in two different trajectories. One in art and one in disability. I’ve always been in the art world because both my parents were on Broadway, so it was just my entire life and I went to NYU for music actually. And after two years of studying music, I just started writing more and transitioned into doing that.

[00:17:35] In terms of disability, I got sick when I was 18. I got more sick, but I’ve always been sick, so that was a point of confusion and I was vaguely unwell. And so in piecemeal I started approaching these symptoms, but was never really getting diagnoses for anything. And it wasn’t until I lost my health insurance when I was 21/22 after I graduated college.

[00:18:05] And my mom had been laid off and my dad was retired, so I had to go on Medicaid and I lost access to all of my specialists and everything was unaffordable and I couldn’t see anybody. And it was around this time, I don’t even remember what exactly was happening politically, but it was so much about Obamacare and the ACA.

[00:18:32] And I remember then, realizing that the government did not care if I was alive or not, which was a very privileged thing to realize so late. But it just totally changed me as I think it did, growing up secure financially and then suddenly not anymore. And having that within that context of health and having that prevent my access to care so much.

[00:19:04] It was through the internet, Twitter, I think that I started learning about disability and my understanding of disability was so limited. It was just basically like someone in a wheelchair was my understanding of disability. And then I started learning the actual definition. And at that time I’m like getting 25 migraines a month.

[00:19:27] I’m sick all the time. You know, there’s this endless array of problems I’m constantly facing that disable me and impair me to work, to lift all of that. And that’s when I started identifying as disabled and leaning more into it and learning about it and finding this whole larger community that I didn’t even know existed.

[00:19:50] Because I really didn’t have people in my life that had these same experiences for the most part. And the ones that I did were often other women or non-binary folk who had chronic illnesses who also didn’t know to engage with disability.

[00:20:09] Nikki Nolan: What outcomes have you experienced now that you’ve been talking about disability, really embodying and understanding disability?

[00:20:15] Olivia Muenz: It’s really hard for me to separate the medical from everything else. I think the larger disability community helped me get diagnosed, which I’m immensely grateful for. I essentially had to diagnose myself and it was through online communities that I got information about diagnoses, but I also got information about their experiences, how it affected their relationships, how it affected their work life.

[00:20:42] Having that framework of understanding has made me advocate for myself better. It’s made me advocate for everybody else better, and it’s something that I’ve implemented everywhere. I have positional power, like when I was teaching at university, I could make very meaningful changes to my students’ lives who very clearly were not having adequate accessibility in all of their other classes or had similar experiences to me where they didn’t fully know that they even were disabled.

[00:21:15] And so it’s really just created an entire trajectory of meaning for me and a way to move through the world, a given community that I always have access to, and a focus in what I’m doing, what I’m working on outside of art, and especially inside of art. It’s my entire focus creatively. I’ve often thought I’m really grateful to have that.

[00:21:42] But it’s also, I think, just made me an immensely better person having an understanding of disability. I think especially if you are at the intersection of one or more margins, you know how difficult your experiences are and you know the distance between what you live and what other people could possibly understand about that.

[00:22:07] And it makes the distance between you and the experiences of so many other people and you become much more deferential and understanding and receptive and responsible for that.

[00:22:21] Sam Proulx: And I suspect that, I mean, I can’t speak to it through my own life experience, but I suspect that having a disability that is in many ways invisible makes that a very different process and a very different journey to kind of arrive at that understanding of difference and then to reflect that understanding of difference back to other people. Especially when you are having things like migraines and when you are legitimately sick in ways that other people either may not be able to understand or may believe they understand and may falsely understand. I’m wondering what your journey has been like, kind of reflecting that understanding of yourself back to other people and getting other people to understand your needs and to accommodate in ways that are actually helpful and and useful?

[00:23:31] Olivia Muenz: Yeah, it’s pretty difficult. Individually and institutionally.

[00:23:37] Something I write about a lot is performativity, and it’s something I’ve had to consider a lot because in order to get diagnosed, I had to become the perfect patient and I had to be very informed, but still deferential. There’s a very, very particular way that I have to interact with doctors in order to be adequately believed, but also, not looking like I’m drug seeking, but also all those different things that can get thrown back at you.

[00:24:17] That’s been the most difficult part for me because it’s prevented care for so long. Even now having I thought, a diagnosis would give me a shield from that, and it hadn’t at all. The first doctor I saw after my diagnosis squeezed my knees and said, well, you look perfectly healthy to me, which just totally blew my mind, but it was like, okay, this is how it is.

[00:24:47] It’s really interesting because I used to really align myself with the invisible disability and it’s given me a lot in my life and still obviously has the ability to decide when I look disabled or not to whoever. But I also don’t even believe in invisible disabilities anymore. I saw somebody once say that.

[00:25:14] That’s really somebody who’s not aware of disability or impairment because there are always expressions that are visible of any kind of illness if you are able to pay attention to them. My demeanor entirely changes as a migraine is coming on. There’ll be a slight modification in the way that I walk depending on my joint pain of that day.

[00:25:36] There’s a lot that you can understand if you decide to, but I think most people don’t even have the capacity to. And I understand. I do understand it because I see other people with my same condition talking about a severe symptom they have, and I find myself disbelieving them instinctually, and I never know why.

[00:26:03] But there’s something about visual recognition that makes you believe something, feel it, internalize it rather than just intellectually understanding it. And I think that’s just been an impossibility for everybody in my life, no matter how close they are to me. The people that most understand it are the people that have lived with me, because I think that’s when I become most visible.

[00:26:29] I’m like, you know, vomiting in a toilet every 30 minutes for four days. You see what that’s like. But for most people, I’m tucked away in those moments. So you only see me when I’m interfacing in public. I think that’s an issue for a lot of disabled people. You don’t get to see the most severe moments because we’ve been tucked away in our homes, in group homes, in institutions, whatever it is.

[00:26:54] It’s been the response to disabled people historically. So yeah, it’s been difficult.

[00:27:01] Sam Proulx: We should only be seen when we’re inspiring, right? It is like a thing and sometimes a feeling. And it’s really interesting when you said you’re not sure that you believe in invisible disability as a thing. And it made me stop for a moment and reflect on what I mean by visible versus invisible disability.

[00:27:20] So I think just to take 10 seconds and clarify that, I think that what I mean by visible disability is a disability wherein both cause and effect are obvious, right? If you’re blind and your eyes aren’t focusing on someone, there is an obvious cause for the effects: the behaviors that change when you can’t see, or if you’re in a wheelchair.

[00:27:48] There’s the cause of not being able to climb the stairs. That is obvious. But when you have joint pain and can’t climb the stairs and take the elevator, people only see an effect, but can’t see the cause. I think that is what I mean, is that making sense?

[00:28:06] Nikki Nolan: Interesting.

[00:28:07] Olivia Muenz: Hm.

[00:28:07] Nikki Nolan: I haven’t thought about it like that either. That’s really interesting. Thank you for clarifying Sam.

[00:28:11] Sam Proulx: Yeah. Because people will judge. I never get judged for needing things because the cause of my need is obvious. Right?

[00:28:19] Nikki Nolan: Yeah. It’s actually super interesting all the things you were saying, Olivia and Sam, about being born with a disability that you don’t necessarily need a diagnosis versus having to have a diagnosis to understand your disability. And even touching that medical stuff that you were talking about, Olivia, I have had doctors just tell me that the pain I feel in my body is just life.

[00:28:43] That’s what life feels like. I’ve had doctors tell me that, which is so delightful. but I totally lost track of my thoughts. No, that’s a part of my brain. My brain has a really hard time if I don’t say something or write it down. But I was so fascinated with what you were saying, that I was focused on…

[00:29:01] Sam Proulx: I mean, it’s the interesting thing about diagnosis. The other thing that I wonder about and what you’re saying about being performative, is the doctors want patients to fit into the boxes, right? To get the diagnosis. And so, I think this probably applies to both of you. Is there an element of deciding, of figuring out your own diagnosis and then forcing yourself to act in ways that fit in that box?

[00:29:32] You can get the diagnosis. I wonder how much it is harming all of us as a whole because we are people fitting themselves into boxes to get diagnoses. And so then there is never a realization on behalf of the medical community that the boxes don’t work because the people that are diagnosing fit into them.

[00:30:01] I don’t know. It’s this thing I was talking about the other day about how blind people can’t be diagnosed as autistic because we are just blind, we hit too many of the symptoms. We need to rethink the way diagnoses work. But am I off the base with this idea that you’re like putting yourself in a box because it’s the box you’ve decided you need to be in?

[00:30:23] Nikki Nolan: Hmm, interesting question. I don’t know. I’ve also, like you, Olivia, I feel like the amount of energy that it takes to self-advocate to get the things that I need and towing that line between not seeming like I’m seeking pain medication or things like that for my migraines.

[00:30:42] I feel like, so I’m not officially diagnosed because it’s really hard to be diagnosed as a person who is assigned female at birth to be diagnosed with autism, and it’s also extremely expensive, incredibly cost prohibitively expensive.

[00:30:59] And so, I think just having that self diagnosis through the community, and really understanding these things gives me permission to be myself, opposed to me trying to measure up and fit into something to be properly diagnosed. It’s actually given me permission to be like, oh, now I see why I do this.

[00:31:21] And it gives me permission to be like, okay, cool. I’m masking now. I’m not masking. I don’t know if I’m answering your question actually. Olivia, what do you think?

[00:31:30] Olivia Muenz: Yeah, it’s funny you bring that up because that’s kind of been my recent terrain is getting adequate mental health and otherwise just diagnoses because it’s something that I deprioritized and trying to get my physical disability diagnosed. But autism is a very common comorbidity with needs.

[00:31:54] So that’s something that I’ve been looking into and it’s really funny how disentangled so many of these conditions are. It felt very similar to my pursuit of a diagnosis for my more physical disability. I made a whole long list of everything, but I was diagnosed at one point with chronic Lyme and CFS and fibro.

[00:32:23] You know, there’s just this whole umbrella of terms that I felt like I could get one square answer out of. I realized I was getting diagnosed and partly it was because I dated a doctor or someone who’s now a doctor who’s in the process of becoming a doctor during this time. And so I had his assistance, but I also watched the entire medical system, how it originates, what it looks like, which was so fascinating, and I could talk about that for hours.

[00:32:57] But there is this question around a clinical diagnosis and I’ve been clinically diagnosed two or three times, but I still have so much doubt even in myself. And I hold onto this diagnosis as a framework, but through this whole process, have had to let go of certainty and this ability to solve and organize and come to an end. And to abandon cure, even just having a direction for treatment.

[00:33:34] I think that’s been something that’s very difficult. But that’s something that I find is in such opposition to the way we’ve structured our healthcare system, which is so hyper-specialized and so embedded in capitalism so that doctors don’t have the capacity to engage with illnesses that don’t have a very firm blood test or something like that.

[00:33:58] When it’s something that is clinical, something that moves around the body instead of stuck in one specialty, it’s impossible to diagnose in this system because we’ve made it that way. And I don’t know if that answers your question either.

[00:34:13] Sam Proulx: It does. I mean, I’m not sure what my question was. I’m just exploring things here and these are great. I think it’s interesting to me that you said abandoned cure because the phrase that ran through my mind was abandoned. Because there’s sort of this pressure whenever you get sick with anything, even if you get sick with a cold, you’re like, oh, well where did I go last week?

[00:34:35] Who had it? How did I get it? What did I touch? We become so hyper-focused on cause and diagnosis. Maybe it seems like hyper focus on cause because we need to understand why someone feels the way that they do or is the way that they are so that we can accept that they are the way that they are.

[00:34:53] Whereas if we, maybe, if we just accepted that people are how they are and moved on towards helping people be how they want to be without needing to hyperfocus on the cause. Or you’ll get sick to your stomach and you’ll be like, oh, what did I eat? Is it food poisoning? We just hyperfocus on the cause and it doesn’t effectively matter.

[00:35:13] You are sick or you are having a migraine or you are where you are at the moment. And I don’t know.

[00:35:19] Nikki Nolan: Yeah, the accommodation, this all circles back to like, we should just make accommodations not just be disabled specific. I think it’s really important for us to understand what our needs are as humans and be able to have access to ways to live life to the fullest. And I think that like within the system that we live in, it’s not set up for us to be able to do that, to ask for help.

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[00:36:45] Sam Proulx: And we’re back. Let’s get right back to it

[00:36:48] Nikki Nolan: Let me pull us back to something you were already kind of talking about. What kind of community did you discover or create through this process that you’ve gone through?

[00:36:57] Olivia Muenz: I think that the larger disabled community has been immensely helpful for me. But I think I’ve formed more of a personal community with disabled writers and it’s kind of an outlier I found in literary spaces. And so to find each other in that has been really helpful because in my MFA program I was often the only person writing about disability or the only person that was disabled.

[00:37:30] And so I’d have all this literary feedback, but I wouldn’t have anybody able to engage with what I was thinking about. And that can be another isolating experience. So to have them, not only for thinking about writing, but even having people to commiserate with on how we fit writing into our lives when we’re sick.

[00:37:44] Because that’s been a really big problem for me, especially lately, is that I don’t know how to be a disabled writer in America. It doesn’t seem possible with my kind of disability especially. Disability is a full-time job. It’s administratively taxing, financially taxing, very laborious. And then if you’re also impaired, and you have fewer hours in the day.

[00:38:26] That really detracts. And then if you have to have a full-time job on top of that, that really is demanding in your life in and of itself. It’s already pulling you away from other parts like your social life, your immediate community that’s around you. And then to add this full-time job of writing, which doesn’t pay you, it makes it very impossible.

[00:38:52] And I still don’t exactly know how to fit this into my life long-term, but having people that know that same feeling has been.

[00:39:02] Sam Proulx: And then of course in your work, when you do get paid as a person with a disability, sometimes you get paid less just to sort of pile on there. Right. I’m also really interested as a writer, as somebody who does and is and I think has the intention to continue actively producing art and creative work.

[00:39:26] When we think about community, how do you relate with the consumers of your art, with the reader and the viewer and that kind of thing? And how do you want them to relate to you, right? Because there’s all kinds of literary theories about how art should be consumed from like death of the author, which I think applies really terribly when we’re talking about disability writing.

[00:39:52] How do you relate to consumers of your art and how do you hope that they relate to you in this communal way?

[00:40:03] Olivia Muenz: Yeah, the audience isn’t something that I’ve super actively thought about, even though I still do think, I think about it a lot. It’s an innate part of how I generate ideas and then the act of writing itself. So there is always that, that narrative concern and that general, almost like PR minded thing of who is interested and that’s why they would care about anything, which really applies to any kind of writer.

[00:40:37] But that was a question that was asked by my disabled professor in my thesis defense that was on my lyric memoir of what do you hope people will take from this? And it was something I was asking recently. So I’ve been thinking about it and I think I move along the lines of the spectrum of disability.

[00:40:58] I think sometimes I’m not writing exclusively to a non-disabled audience, but I have a non-disabled audience in mind where I’m trying to communicate this is my experience as a disabled person. This is really how it is. And other times I am writing only for disabled people and I do not care what a non-disabled person, what if it resonates with them or not.

[00:41:23] If they understand it or not. If they do, great. But I’m writing this for disabled people and that’s often things that are more, especially just like the experience, the embodied experience of being sick, having that be recognized is really important for me, for disabled people.

[00:41:48] Nikki Nolan: I relate so much to what you were saying. I’m also an artist, side tangent, gonna talk about me. Sorry.

[00:41:56] Sam Proulx: Hey, I do it enough.

[00:41:59] Nikki Nolan: But I very rarely think of the audience. I always am just so cerebral in the way that I work and I’m constantly just going towards things that are curious to me. And I think that maybe it’s a downfall, but I can’t tell. But I never really think about who’s consuming my art or what they’re doing.

[00:42:21] I’m just really curious about an idea and go deep, as deep as you can into it so that it’s stimulating for me. And if other people get stuff out of it, it’s really exciting for me. But also, that’s not my end goal. My end goal isn’t the audience.

[00:42:37] Sam Proulx: Yeah. And yet it’s interesting that for both of you, audience is a necessary part. The dialogue and the communication is still necessary, right? I know people in the disability community who say, well, I write for myself. Like it or not, I don’t really care.

[00:42:54] I’m gonna continue doing it. That doesn’t seem to be the case for either of you.

[00:42:58] Nikki Nolan: Hmm. That’s really interesting. I don’t know. I don’t make money from my art. Like I’ve never tried to commodify myself, and so I don’t think that I do. I’m not really beholden to an audience, unlike the podcast. I do like podcasting. I think very specifically about who my audience is and try to dig at curiosity, but not so much when it comes to my actual creativity.

[00:43:22] Sam Proulx: Interesting. And yet we’re having this podcast because it is thinking about things that are interesting to us and interesting to other people.

[00:43:33] Nikki Nolan: Please let us know if these conversations are interesting to you. I’ve gotten so much amazing feedback about the podcast and how helpful it’s been for people. So I would say that feedback is important from your audiences, if that’s something that’s important, but we’re getting really close to the end. And so I just wanna ask, along your path, has there been anything that you’ve discovered that’s really surprised you?

[00:44:04] Olivia Muenz: What I was saying before about diagnosis was very surprising, I think, because I put all my eggs in that basket and I just went as hard as I could towards it and worked tirelessly and just didn’t pay attention to anything else. And then when it came, when things were unchanged, although a bit more directed, that was fairly difficult.

[00:44:36] And as I’ve kept moving since then, it’s been like five, six years since then. I’ve seen it as this very cyclical process. And it is a process. It’s never moving towards an endpoint, which is something that has really helped me in literary representation or just narrative representation of disability to move against what’s been historically represented, of this narrative arc where it resolves in either death or cure.

[00:45:15] Or using disability as some kind of narrative device, this clunky metaphor, and thinking about it through that cyclicality has been really helpful for me in how I structure my work. But also just how I move through my life and letting go of certainty if I can.

[00:45:36] Sam Proulx: That’s so interesting in the way that it resonates with what I do and talk a lot about in the field of corporate accessibility and making websites and products and things more accessible. There’s that same narrative. A thing starts off as inaccessible, something happens and then it becomes accessible and then it’s all done.

[00:45:57] It just hadn’t really occurred to me that there is some kind of resonance between the process of being a person with a disability and the process of making a thing more accessible. That’s not a question. I’m just sharing a thought that you gave me as you were talking.

[00:46:12] Olivia Muenz: I just think it’s probably very deeply indebted to this perfect idealized body that none of us can ever have. And so we’re all existing on this bell curve outside of it.

[00:46:26] Oh shoot, I forgot what I was saying. Classic disability stuff. I don’t know where I was going.

[00:46:33] Sam Proulx: Yeah. I think I hear there’s this idea that there is a classic idealized body in the same way perhaps that in utopian fiction there is a perfect world that we can somehow achieve or build towards or live in.

[00:46:47] Olivia Muenz: Yes, that’s exactly what I was thinking of. The fallacy of universal design and you know how it has to be this very responsive, dynamic thing rather than just something prescriptive that you can ask people to do.

[00:47:00] Sam Proulx: And has to be ongoing because like some, even if you had created something perfect in 1960, it would not be perfect now because we’re not living in 1960.

[00:47:08] Nikki Nolan: I think it’s important for people to realize that there is no universal solution to anything. Everything is always evolving because everything is always changing. We’ll never be perfect, but we should always be trying to make things better.

[00:47:23] Sam Proulx: Yeah. In the same way that disability will never be at stasis. What your disability means is always changing either because of internal factors or environmental factors. What it meant to be blind was a very different thing in 1950 than it is today and what it meant to be a woman was different and what it meant to have autism was different.

[00:47:43] Nikki Nolan: Mm-hmm.

[00:47:43] Sam Proulx: Yeah.

[00:47:44] Nikki Nolan: So we’re getting really close to the end. What are some small ways that you feel people can start on a path towards inclusion, access, or furthering the rights of people with disabilities?

[00:47:56] Olivia Muenz: You kind of have to be aware of the diversity of experiences within disability. That was something I made a very concerted effort to do when I first learned about it because there are so many different disabilities and I have hardly anything in common with a number of them outside of both having the experience of disability.

[00:48:20] And I think that allows you to just understand all of the different ways it affects people’s lives. And I think there’s this understanding, I think the figure is like $18,000 more for disabled people to exist than non-disabled people. And I think most non-disabled people would think of going to the doctor and getting medicine and stuff like that.

[00:48:47] But the disability tax is so expansive. It’s on everything. I have my own room if I’m going somewhere. It’s endlessly accommodating of my disability. And so becoming aware of all of those ripples too can help you just anticipate it more. I think setting things up ahead of time without me having to ask has been just such a wonderful gesture by someone who knows about disability and is at least trying.

[00:49:21] But I think I really do think just, just general awareness and receptivity is some of the best work you can do. At least that was my experience in the classroom being a teacher. I would have professors that would have my accommodations and then not actually meet them. And I didn’t know why we didn’t have to do training around disability and accessibility. It’s a law that we have to abide by, but we didn’t.

[00:49:51] And yeah, just knowing why students were asking for that and knowing how to make space and how to get ahead of accessibility, I guess.

[00:49:59] Sam Proulx: Yeah. And sometimes I wonder, do you think the dialogue around accommodations is too open-ended? I especially asked this because of your experience in education in that when I was participating in it, I found that all of the burden is placed on our shoulders as people with disabilities. You’ll be asked, what do you need to study this subject that you’ve never studied before? Which is not necessarily a question that is answerable by you as the student, right? Like I don’t know. How do we make the accommodation dialogue better in that it doesn’t put all of the burden on us to know what we will need in the circumstance where the other person has the power and they’re the one that knows what’s gonna happen over the course of the year?

[00:50:53] Not me.

[00:50:54] Olivia Muenz: Yeah, pragmatic resources too are really wonderful. I remember when I was going back to school for grad school, I didn’t use accommodations in undergrad and I really should have. And so I made a point to do that in grad school. I went to my communities to see what other people wrote, and I was like, oh, yeah, that is something that I really need.

[00:51:18] But having those accessibility offices, whatever it is, having a resource of all of the kinds of options you could possibly have and could reference would be great. It would be wonderful if people just thought about it more too in general spaces. Just a quick checklist, is there an elevator?

[00:51:41] Are there any steps anywhere that I have to work around? Can we make this a scent-free space? You know, just those kinds of basic things that would be pretty affecting as a habit too, would be great.

[00:51:56] Sam Proulx: Yeah. Yeah, absolutely. That said, we’re getting to the end. This has been an incredibly great, dynamic, evolving, free flowing conversation. Thank you so much for being here with us today and for having it. You’ve mentioned some of the things that you’re working on and that you’re doing, and so I wanna close by asking, folks who are interested, where can they find you?

[00:52:21] Where can they hear more? And keep up with what you’re doing and what do you wanna promote?

[00:52:25] Olivia Muenz: I have a website www.oliviamuenz.com/ that has all of my publications and ways to contact me, including links to my Twitter and Instagram, which is just my name as the handle. the benefit of a weird last name. I’ve that book coming out in March, which I’m really excited about. And lots of other work across genres, if that’s an interest of yours that you could read online.

[00:52:52] I would love to connect with anybody for anything. Love disabled people.

[00:52:58] Sam Proulx: All right, sweet. And we will have links to all of that in the show notes. So if you’re driving while you listen to this or something, don’t feel the need to sort of look down at your phone. It’s all gonna be there for you. Always feel the need to reassure folks about that.

[00:53:11] Nikki, any, any closing thoughts?

[00:53:13] Nikki Nolan: No, thank you so much for being here. This was a really lovely conversation.

[00:53:17] Olivia Muenz: Thank you. This was wonderful.

[00:53:20] Nikki Nolan: Thanks for listening to Disability Bandwidth. If you liked this episode of Disability Bandwidth, please subscribe and share it with friends and family. Today’s episode was hosted by Sam Proulx and Nikki Nolan. Edited and produced by Nikki Nolan. Transcripts are written by Emma Klauber.

Music is created by Efe Akeman. Special thanks to everyone at Fable who without their support, this show would not be possible. You can find out more about Disability Bandwidth on Twitter and Instagram @disabilitybandwidth, or on our website at www.disabilitybandwidth.com.

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