Season 2, Episode 8: An Episode for Every Body

In this episode, co-hosts Sara Dixon and Daniel Pewewardy dive deeper into category 4: A Book About a Culture or Topic You're Unfamiliar With. Joining them is Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body (who is also from Kansas!) to discuss a topic that may be unfamiliar to a lot of people beyond media depictions: living with a disability. From navigating the world not built for bodies like hers, to writing, to becoming a new mother during a pandemic, Rebekah shines light on a topic that is still widely misunderstood.

Transcripts are generated using a combination of speech recognition software and human transcription. Some errors may occur. If you find a transcription error, please contact us with any corrections and we will make those corrections as quickly as possible.

[MUSIC]

SARA DIXON, VOICEOVER: Hello, friends. Thanks for joining us for another episode of Read. Return. Repeat: A ReadICT Podcast. We're calling this one An Episode for Every Body. I'm Sara Dixon.

DANIEL PEWEWARDY, VOICEOVER: And I'm Daniel Pewewardy. Today's episode features category four, a topic or culture you are unfamiliar with. I love this category because it gives us a chance to open up a dialogue and hopefully shed some light on something new. Lifelong learning for the win!

SARA, VOICEOVER: Our guest today is Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body. Rebekah grew up right up the road in Overland Park, Kansas.

DANIEL, VOICEOVER: After recovering from cancer as a young child, she was left without the use of her legs, and since then has used a wheelchair. In addition to her book, she writes short mini-memoirs on Instagram accompanied by an artistic photo, detailing her everyday life in a body that looks and moves differently than most. She has a Ph.D. focusing on creative nonfiction in disability studies.

SARA, VOICEOVER: She's a strong advocate in the disability community, and we're really psyched to talk to her today.

DANIEL, VOICEOVER: Can't wait.

SARA: All right. Hi. Welcome, Rebekah, thank you so much for joining us today.

REBEKAH TAUSSIG: Hey, thank you for having me. I'm looking forward to it.

SARA: Yes! We are very excited to have you on Read. Return. Repeat. Can you tell our listeners a little bit about your book for those who haven't read it yet?

REBEKAH: Yeah. Well, just a little bit of background on sort of the book's birth story, I guess: I've been disabled paralyzed since I was really young. And for most of my life, I didn't really make much of that or have language to think about it, or understand what that meant to me. And when I was in graduate school, I found disability studies and I was reading about disability justice history and finding more language and reading other people's stories. And it just really awakened a lot for me. And so writing has always been a space I go to understand. And initially, I just went to Instagram and started writing what I later came to call like mini-memoirs of just these little snippets of life from... you can't... can't see on the Zoom, here's my chair -- I started writing little stories in bits about life from that perspective, from what things felt like and looked like from here. And after I think about three years there, it was sort of... you know, like you can only write I think it's like 2,200 characters in an Instagram post. Actually, I know it's literally 2,200 because I have to work within that restraint anytime --

SARA: I guess I didn't even realize that Instagram had a cap but --

REBEKAH: Oh yeah, it does. Hard cap.

SARA: I guess that makes sense.

REBEKAH: Yeah, so at a certain point, it was like, I want to write more: wider, deeper, lengthier stories. And so that was sort of a natural progression into a book. And so the book was sort of born through that, that moment, that intersection of moments, I guess. And the book is really what I ended up doing when I wrote the proposal for that book was just looking through all that I'd written into, like, what themes keep coming up over and over and over again: things like love and romance, things like about accessibility, things about representation in storytelling. And so those became chapters in the book. And so I guess, I think it's sometimes called like a memoir in essays, like each chapter sort of stands alone, but it tells a larger story about, you know, my experiences in the world. And my thoughts on those experiences.

SARA: Awesome. Well, I read it and I loved it. I thought it was really interesting and insightful. And just like, I don't know, I really just enjoyed hearing about your life. So thank you for putting that into the world.

REBEKAH: Yeah, well, thanks for reading.

SARA: And also, it should be noted that it is on The Big Read list this year, isn't it?

REBEKAH: Yeah.

SARA: We're a Big Read community and so --

DANIEL: Congratulations.

REBEKAH: Yeah, thanks. Yeah, it's been... it's been a really special part of things to like, meet communities of people. I just got back from Las Vegas. They, the city of Las Vegas did it for one of their Big Reads. And, like, just so cool to meet people and people who have read the book and have little... you know, I think that this book, it's interesting because it's very specific to my life. But I think when you start diving into conversations about disability, it sort of sparks a lot of things in other people's lives. And so hearing other people's stories is my favorite, favorite thing. So it's been fun.

SARA: Cool. That's awesome.

DANIEL: So you talk a lot about ableism and how it exists in every facet of our daily life in your book. Can you elaborate on that a little bit? Why do people struggle with understanding ableism and how can we change minds about why we should address it?

REBEKAH: Yeah, well, just to sort of like start out the gate with like, a working definition so we know what we're talking about with ableism.

SARA: That sounds good.

REBEKAH: Yeah, I mean, I I get really frustrated by like the standard Oxford -- I mean, you hear me complain about it in the book, the standard Oxford English Dictionary definition of ableism is just so one-dimensional and uninformative, I think. So I think the standard definition would be discrimination against disabled people, which I think really conjures this image of like the one moment somebody discriminates, or is a bully to or doesn't hire someone with a disability, which of course all of that is part of ableism. But my way of thinking about ableism is much wider and deeper and maybe often shows up in a lot more subtle ways that maybe doesn't even have anything to do with intention at all, but sort of the way we built the world.

So the definition that I... that makes the most sense to me is that ableism is a process of favoring and building the world around a quote-unquote average body and mind, which is to say a mostly idealized body in mind, and then also discriminating against bodies that are perceived to move or hear or see or think or process or look differently from that vision. And so I think, you know, at its heart, it's a story. I mean, I think ableism is a story that we have as a culture that shapes what we think a good human life is, a valuable human life, and what that life should look like, and the rhythms of that life, and then we build the world around that idea. So it's a story.

And I think, you know, to answer your question, Daniel, I think one of the reasons that it can be really difficult for people to really wrap their heads around or understand ableism is because it's a story that has such deep roots and that we've told so many times over and over and over again, that we don't recognize it as a story at all. We think like, "This is just... this is just how it is, right? This is just how the world works. And this is how it should be." And I think, interestingly enough, like, when you look at it, disability as an experience is like one of the most fundamentally human experiences we have. I mean, 61 million adults in the U.S. have some kind of disability. That's like one in four adults, a lot of people. But also just like, if any of us live long enough, disability will tangle up in our lives in some way as we age or as we get injured or an illness. And so it's funny that -- not, funny is the wrong word. It's not haha, funny, but it's... it's really puzzling and interesting that something that could be so widespread and big and sprawling, and so many lives could... can tangle up and that we would continue to perpetuate a system that is so punishing for us. But I do think that part of it is that it's... it's just a story that we told so long that it's hard to recognize or see it, because it's pretty deeply embedded in our thoughts on... on what it means to be a human.

DANIEL: I know a lot about -- or have read a lot about racism as a systemic issue. And I never really thought about ableism being in that same way. It's not... like most people think of like racism as bigotry, but there's systemic issues. And yeah, that totally makes sense that it's... we also have a systemically ableist problem.

REBEKAH: Right, exactly! Like, okay, this is like the tiniest, tiniest example, like a super tiny example. But it just happened recently, so it popped into my mind. Like I just mentioned, I came back from Las Vegas recently. And on the flight, and you know, flying with a wheelchair is...

SARA: I read your article on that.

REBEKAH: It's a scary process, right? It doesn't always go well. A lot of chairs get lost or damaged. And so it's kind of scary. But we, my partner Mike and I were just sitting on the plane waiting for my chair to return. And it was taking a long time, which, you know, makes us anxious, like, "What happened? Why is it taking so long?" But the flight attendant, she said something like, you know, I'm sure it's on its way, you know, just takes a while. It's not on purpose. And it was such a funny moment for me. I was thinking, well, I would never assume that it's on purpose, right? Like, I don't think that wheelchairs get damaged on planes on purpose. I don't think they get lost on purpose. I think that what we have created is a system of flying that makes it really difficult to have a mobility aid and that's why those things happen, right? They're not on purpose. And that's not to say that there aren't things that do happen on purpose, but just like you're saying, Daniel, like when it... when it's a system that has been created and if you have a disability, it can be very hard to fit into that system or belong in that system or feel safe in that -- or be safe in that system. So tiny, tiny example of something that is much bigger and more complicated, but yeah, we've created systems that operate that way. And that can be... it can make it difficult to participate in the world, if it's, you know, not built to accommodate you or with you in mind.

SARA: Yeah. I mean, honestly, it kind of even stems back to some of the language that we use. I mean, we just throw out these phrases like turning a blind eye, it falls on deaf ears. And that can, I'm sure, be very hurtful to people who actually, you know, have that disability. So, I mean, how has this language that we are using -- I think social media and different things have kind of made us realize that we're... we're being hurtful when we use these phrases unintentionally. And how has that changed in recent years? Are there are... there ways that we can do better?

REBEKAH: I definitely think people are more interested in and rethinking language or recognizing or thinking about the harm that phrase or word might cause someone. I mean, language is such an interesting piece of it, though. I mean, you could talk like the rest of the hour of language, because the examples that you gave -- falling on deaf ears, turning a blind eye, right -- those are... like language, to me, it's like, there are lots of ways that ableism shows up in our language, but I don't know that every example carries the same amount of weight. And that's not to say that they don't carry weight. But like if you think about the R word, right, and the impact of using a term derogatory, like intended to belittle someone, I think that's a certain kind of example of ableism in our language. And then you have these examples of like, turning a blind eye or falling on deaf ears, like turns of phrase that are like embedded in our lexicon. And I do think we should avoid them, I think we should change our language and try not to use those phrases.

But what's really interesting to me about them is that I think that they illustrate just how deep these roots of ableism are, right? Like it's more to me like a little piece of fruit off of the tree of showing like, we associate disability with almost like a moral failing in those examples, right? Like falling on deaf ears means that someone is just unable to listen or be... or hear or receive information, or turning a blind eye is like ignoring some kind of injustice or, you know, like, so we have these ways that... these signals to us culturally, that disability is equated with some kind of failing, potentially even moral failing. And that's interesting to me to see that, right? Like it's like this piece of evidence that we can like, looking at a crime scene or something. I'm doing lots of mixed metaphors here. But like, you know, like... like you can pick that up and look at it and say, like, wow, look at those roots. So I think, I think that when we start examining what disability means to us, those phrases start to hit us differently.

So like, for me, anytime I hear, you know, like, "I was paralyzed by fear," it's not that I'm, like, offended, it's more just like this ping in my brain, like, "How funny to you that... that is what paralysis means to you." You know, or not means to you, but means to us culturally. And so I think that, like, a lot of times we try to police our language by saying like, this is the list of things not to say. And I think that that can be, I mean, maybe a little useful, right? But like, I think the deeper work is like, what does disability mean to us? And what other... how could we, how could language like be inspired to express something differently? And I think when our ideas about disability do slowly start to change, like at the root, I think that that language just sort of like falls away, like... like a dead piece of fruit, right? Like it doesn't make sense anymore. Like it doesn't feel true anymore. So I don't know, that's a little bit of my thoughts on that, I guess. I could talk about that for a long time. But the language piece is just really endlessly interesting to me. And I think maybe part of it is, I think, a really common impulse that we all have.

And it's not a bad impulse is just to say, what's the right thing to say and what's the wrong thing to say? But to me, it's so much more about like, why and what are the implications of that? There's so many examples, like the ones you named earlier come up, but there's so so many ways that we do that in our language. And also -- and then I'm going to stop, but like, it is really fun to think about, like if we saw it culturally like disability meant to us something like imagination and innovation. What kinds of turns of phrase would come of that? You know, like, what ways would we talk about something like blindness? What sort of phrases and ways of thinking would come out of, I don't know, our... I just feel like I don't know what it would be, but I feel like that's like a really interesting thought experiment. That's all I'm going to say.

SARA: We could spend the whole interview like thinking about it because I just was like, "Oh, well, what would we say?"

REBEKAH: I don't know.

DANIEL: But I, the thing is that people, every word for lower intelligence that we all use, like stupid and dumb are all like on some level, ableist terms. And like, people are like, we don't have a word for it. Well, I mean, like, why does like everything... like when you're using those words, it's like, you just mean it's bad. You're like, why are we immediately quote, like, lower intelligence with being bad? Like, that's... that's the issue. Don't try to like, it's like, we could still use stupid, but it's like, should we even... like just say something's bad. Like, say it's like, that's kind of like --

SARA: I say stupid a lot.

DANIEL: I know, it's --

REBEKAH: Me, too. I know. It's a tricky... I mean, it's really tricky. But then it's like, okay, wait a minute, what do I actually mean? What am I actually trying to say? And that that can be a useful thing to, to just learn to be a little bit more articulate, I guess. Lame is one that like, a lot of people don't say as much anymore. I think that's falling away. But I mean, like, you say lame when you mean like, worthless, right? So like, what is it, where did that word become synonymous with worthless? And so yeah, it's just... it's interesting to think about. And I think that I, you know, I feel like I always want to say like, let's not... let's not like, punish ourselves, when we... when we like when those words sort of come out of our mouths, but also like, let's also think about them and try to be intentional when that comes up. Because it is, I mean, like it is, like we just said, we say some stupid comes out of our mouths still. So how do we like, eradicate that?

SARA: And I like that you're saying like, don't punish ourselves, right? Like, you use it. You use a phrase, you use a word, and okay, so you did, right? Like, try not to use it next time. How can we be more intentional in our language? I think that might be how people are more likely to change their turn of phrase, so that, you know, if you're just like, "Oh, you can't say that anymore," they do it out of, I don't know, just being rude.

REBEKAH: And if you don't know why, then it's not really fixing the deep problems that will show up somewhere else. Right? I think the much more important thing is to understand like, why and to be curious about it, you know, like to meet that, that challenge with some curiosity. And I think you're right, if it's like, "You never can say that again. And if you do, you're a horrible person." And it's like, well, I give up. That's gonna happen. So I think yeah, like, to look at... to bring curiosity to it, I think is important.

DANIEL: So COVID happened. And in many ways, it's still happening.

REBEKAH: Yeah.

DANIEL: How did -- I'm not the best at segues.

[LAUGHTER]

REBEKAH: I like it, let's do it.

DANIEL: How did restrictions and local stay at home orders affect you and your family? Compared to your pre-pandemic life, how did this experience make things easier or harder?

REBEKAH: Yeah, I mean, it's always both, right? I mean, I think most, there's so many specific stories, everyone has their own version of this. And I think there are so many both-ands of it amidst the chaos and loss. For us, you know, it was an interesting time, my... I was pregnant at the time and my husband was going through cancer treatments at the time. And so at the very beginning, I mean, the thing that was the worst was just that we had to make decisions about Mica's cancer treatment, because I guess that's not about stay at home orders, but just the threat of what would happen. We were finding out early on that, like people who are on chemo that got COVID were significantly more likely to have harmful lasting effects, or I guess death. I don't even know if we were talking about lasting effects at that point. So we ended up deciding not to do his last round of chemo. And that was really an impossible decision at the time. And I will also mention that he's doing really well. So we get to have that, that gift of knowing that that worked out okay for us, but at the time, we didn't know. And then yeah, so then we were at home with a baby pretty soon after that.

And I think that there were really wonderful gifts and deep losses of having a baby when we couldn't see anyone. So he... I mean, like, we didn't leave the house except to go to doctor's appointments for like, until he was like nine months old. So we lived in this tiny little house. And Mica was working from home still, and I was home and we just like, lived in a little island. And our son like, is obsessed with leaving the house now, like we can't stay home ever. But you know, so that I think there was that gift of like, we were able to spend a lot of time all together and... and I was like... that was my, that's our first and only baby. So like, there was a lot for us to figure out, there was a lot for me to figure out as a mom with a disability and how to transition through each week of him change -- of this baby changing. So we got to figure a lot of that out in privacy. We also didn't have the kind of support that we had expected to just because we weren't like seeing family and... and friends very much and. And that was hard. It's really hard to not share him.

And I'm trying to think of some of the other pieces of that time, it was just a really heavy and beautiful time, like so much at once like to have a kid and then to be scared and wanting to protect him and to be doing a lot of it alone. It was just a lot at once. I think we'll probably, us and so many other people will be unspooling that for a really long time. Like, what was that? Like what happened? How did that change us in good ways and not great ways? And, and what do we need to recover from? And yeah, you're right, like, it's not totally over. And so there's a lot of question marks that come with that too. And how to... Otto is, our son is in school now. And so there's this new I don't know, exposure level, I guess. Like, you know, toddlers are notoriously germ magnets. And we're just trying to take it day by day and yeah, try to figure out what that was and what happened to us in that time. It was a lot at once.

SARA: Did anything get like... you know, because you could, all of a sudden, there were so many delivery options, and like, you know, it made maybe staying home and living in your little isolated island possible? I don't know.

REBEKAH: Yeah, no, it did. I mean, it was totally, it was very possible to do it. And I think also like, I mean, we can talk about a lot of different things. But being a mom with a visible disability, I dodged a lot of scrutiny. Like we didn't have to be seen very much. And there was, like, a lot of relief that came with that. I mean, even now, I feel like I'm still building up calluses that I had before of like, oh, yeah, this is what it's like to be seen in public and watched and stared at and scrutinized. You know, like, even before my son was born, being visibly disabled in public is an experience of being watched. And so then you add a kid into the mix, and it's just like, off the charts. So yeah, I mean, there was the gift of... of privacy. And I heard that from a lot of people with visible differences, just like the relief of like, not being seen all the time and watched all the time. So I think that I was able to build some... some bonds up with Otto without people watching us, that was a that was a gift, too. And yes, delivery options. And I really felt mixed about that, because it was always like, oh, this is really convenient. And like, I don't... then also the person delivering it has to live out with exposures that we're not... that we're able to not take and what, how do we, but we want them to have a job. So what, how do we navigate this? Like it's a lot, it's a lot. It's complicated.

DANIEL: It's hard to be ethical sometimes.

REBEKAH: Right? Like, what, which path is the better? Yeah.

DANIEL: I was relying on like, if I'm like, if I'm doing something, and I'm like, oh, man, I don't know if I should, just read an article and I just have this little mantra that there's no ethical consumption under capitalism. Okay, we're doing Starbucks today. Okay.

REBEKAH: There's no, yes, there's no harmless path through here. So, yes, it's a good reminder. But we tried to give very big tips, I'll say that's one thing you can do is give big tips.

SARA: Studies have shown that COVID disproportionately affected marginalized communities and those of lower socioeconomic status. You also write about how systemic poverty disproportionately affects those in the disabled community. What are some common roadblocks that people living with disabilities encounter that makes attaining even employment and like stable housing, these things that we take for granted, challenging? I mean, what can what changes would you like to see that might address this problem?

REBEKAH: Oh, many changes. Yeah, I mean, I think this goes back to what were our earlier conversation just about how ableism works and like, how we build the world around a very narrow idea of the like, healthy body and mind and everyone who doesn't fit that kind of finds their way in some sort of marginalized space there. So I mean, like with housing, the amount of affordable, accessible housing in our country is abysmal, it's atrocious. I mean, I feel that in my own way every time I have to move, and I try to do as little as possible because it's just like... we looked for the house I'm in right now for two years, like... a lot of that was like during the COVID. And a lot of that housing stuff was difficult anyways, but this house was the first house that I entered in all the houses that we looked at in two years that already had ramps, and the person who lived here before us had them built for her dog, her dog was getting older. And so she builds all these ramps and they're beautiful. And it's like, wow, just to be able to get into a house by myself. And that's just for my situation. I mean, there are a lot of people -- and this was me, I guess earlier who also don't have a ton of money for housing, and inaccessible housing. And then when you're in that situation, in Kansas City where I live, there are like a few housing developments that you can put your name on a waiting list for. And those waiting lists are like years long, like all of them, because so many people need them.

Again, I just came from Las Vegas, and they were telling me about a similar situation in Las Vegas, they were specifically building a new housing, like unit accessible, it was supposed to be accessible, affordable housing unit, and they were able to build 70 units, which they thought was really substantial. And it, the waiting list was like 300 people long within like a week. I mean, it's just like, the need is so high and the availability of that housing is so low. So that's just people falling through the cracks, right? We built the... we build our houses and our housing developments to cater to a specific kind of, I would say body and mind and also like, when we think about affordable housing, especially right now, there just aren't places for people to live. And then when we're thinking about employment, there are a few things that make that complicated. And we could look at that from a number of different angles. I think in our country, in particular, the... there is, there's sort of this impossible setup with health benefits. So we have the idea that you have to like, you get health benefits through full-time employment. So if you have a disability, that means that you will need to maintain that full-time job with whatever expectations are in order to get those health benefits, which can be difficult for a lot of people with disabilities depending on the need and limitation and assets. Or you have the option of staying on like, like Medicaid. So like a government program, but you can only have certain income to stay on that.

So there's like this impossible space between like, that's – and this was this was me, like several years ago, but you like... let's say you're like, let's just say for pretend, imaginary situation, you're like in school, and you are on Medicaid because you have a low enough income that you can stay underneath the banner of those benefits. You're looking out at the job market and you're thinking, what kind of job can I get? It has to be high enough that I can get full-time benefits through that job or low enough that I can stay on my Medicaid benefits, right? But there's anything in between, which is a lot, anything in between won't be enough to support just like having health benefits. So that's a kind of elaborate way to say that there are ways that our systems are sort of set up that make it really hard to... to have a job that allows you, that supports you in the way that you need to be supported. So I think that that's incredibly frustrating.

But even beyond that, like if we were not looking at the system, but we were just looking at like employment -- and I think this is changing and I'm excited about this potentially changing -- but a lot of times it's difficult to have a disability and a full-time job, right? There are ways that, again, to go back to ableism and the stories that we have about what it means to be a human, a lot of times having a need feels like it makes you less valuable. And so disclosing whatever combination needs you might have in a place of work can be a difficult, intimidating thing to do. Thank goodness we have things like the ADA that... that are to protect us and say that even if you have a disability, that's not a reason to like fire someone or not hire someone. But the lived experience of disability in the workplace can be really... can be difficult and draining to try to navigate. I do think that employers are becoming more interested or open to the idea of thinking about disability in their work communities and how to support and honor that, like value the assets and support the needs of that person. But I think we have a ways to go, that's an ongoing conversation.

So now I'm not even remembering what you initially asked me. You were talking about barriers but you were also talking about COVID. Was there a --

SARA: The COVID was just a segue. But no, I mean, I think you talked a lot, it just stems back to this whole conversation about systemic ableism. And I feel like a lot of what we're talking about just kind of goes right back to that, that main point. It just... we're gonna have to do better, I think.

DANIEL: Oh, yeah, the workplace ableism you bring up is like, it's... it's really disheartening when we tell people, especially people with disabilities, that you should, you can be whatever you want to be. Like, they go to med school, become teachers. And then like the insurance company's like, you're a liability, we can't hire you at this hospital. And it's, it's so disheartening, and just we got to do better and totally agree with everything you have to say, it's just...

REBEKAH: That narrative, like, I grew up on that in the ‘90s, like, you can be anything you want to be. And I think that I liked the idea of it. But if you just say that to someone, and then and then you just sort of like throw them out into the world and they are like, "Wait, what is this? What? What are the rules here? How does this work?" It's like, there's a huge disconnect. So like, I think we're gonna say that there's, there's more work to be done to make that like a reality, right?

DANIEL: And you wrote, you write a lot about being a mom while using a wheelchair. From the many wonderful moms I have met in my life, it's a tough job but also very rewarding. Tell us about your experience of motherhood, what aspects you find the most difficult, and what do you enjoy about being a parent?

REBEKAH: So much! Oh no, I have a hundred things to say! It's so much. Yeah, I, I will say that, I... I wrote this book that we've sort of been talking about, Sitting Pretty, the book. And then it was like, less than 24 hours later that I found out that I was pregnant. And so I wrote this whole book about like, disability and my story with disability and what it means to me. And then I immediately -- almost immediately, nine months later -- became a parent. And it threw me really hard, it was a huge adjustment for me. I'm used to understanding my body and my disability and what it means to me as myself, and then I just didn't have any muscles built in understanding what that would mean in kind of become, entering into this role of caretaker with a history of being seen as and sort of this... like we don't, culturally we don't imagine parents as disabled people, right? Like, that's just not something we have in our cultural imagination. We don't have representations of it. And sort of like picture, stereotypical picture of a mother in our culture is like someone who can, doesn't have limits, right? Like, it's the person who's like, like scrambling eggs with one hand and like going off to work with the other. You know, like it's this impossible picture of limitlessness. And it just was a transition for me. And a hard one.

I learned after becoming a parent, I went to this like virtual panel -- because COVID, everything was virtual -- went to this virtual panel of parents with disabilities, and one of them was a lawyer. And I learned at that panel, I think Otto was three months old at the time, that it's legal in over half the states in the U.S. for parents with disabilities to lose custody of their kids for no other reason than having a disability. There's laws on the books in those all those states. And the ADA is there to I mean, presumably combat that or... like the law is complicated, but those laws still exist on the books and that, I started meeting more parents with disabilities who had experienced difficulty things with custody. And so just like moving through the world. We talked earlier about COVID and like, not being seen, and then and then eventually being seen in the world as a parent with a disability, it was a scary experience for me with all this momentum against that image. So it's been a lot. And I think, you know, two and a half years in, we are really... I'm much more comfortable, we're... we're more comfortable, I'm more comfortable with that idea of that role, and who I am as Otto's mom and how disability fits into that. I think one of the things that has been really surprising to me is the way that I think that disability often kind of forces me to be the mom I actually want to be. I am, I have a lot more incentive to work with my son collaboratively. To move slowly. You know, we... we have a very slow rhythm that I appreciate, and value about us. And I think that if I had a different body and rushing and forcing was easier for me to do, I might lean on that more, but I'm really grateful that like, my body sort of pulls me in this other direction. And that we work together quite a bit. And I am glad we've kind of been encouraged to do that based on the situation that we're in.

And there are ways that disability, like a lifetime of disability really has equipped me for the task of parenting in a way that I think is kind of culturally counterintuitive. We think about parents needing to be limitless so any limitation is going to like detract from your ability to parent. But I find that my experience with disability makes me just a lot more comfortable and practiced with being flexible. With, you know, plans changing last minute or needing to leave somewhere early or cancel plans or go somewhere else than we were expecting. I think it makes me a creative problem solver, which you need in parenting. I think there are a lot of ways that this experience has better equipped me for parenting. But the adjustment was a lot. And I think it is for a lot of parents, right? It's not just something for someone with a disability. But there's an extra layer of complication, I guess. But it is something we're growing into. And I feel like we're... we're two and a half years in, I feel so much more settled in this role than I did like two months in. I know that it will continue to evolve. That's, that's inevitable, too, but kind of where we're at.

SARA: I'm just really kind of wondering, you know, because you're just talking about how Covid impacted your... that whole time of your life. And so how COVID may have helped you kind of not feel... not as a parent, because I don't have any kids. But you know, I see this in all of the people that I know who have -- who are parents and like it's just this constant, like, are you doing everything that you're supposed to be doing that society expects you to do as a mother? And so when COVID happened, and all these people who had children during that time, they kind of got to be separate from all of that, right? They didn't have that constantly in their face. And so did you feel like that was kind of your case as well?

REBEKAH: Yeah, yeah, I think so. I mean, I had nothing to compare it to. Yeah, I think so. I mean, I think all of us are... everyone who is a parent or thinking about becoming a parent or will one day become a parent, I think the more that we can, like, remove ourselves from that stereotypical image of a parent and this is what a parent should be, the better. There are as many ways to be a parent as there are people, literally, and this can look like anything, it just needs to look like something that supports and works for you and your kid or kids. That's it. Like, and that can mean anything, that can look like anything. And so I am really eager for us to move in a direction where parenting looks like different things. And you don't have one agreed upon version or... or I don't know. Yeah, I don't know that there's one agreed upon version. I think there's maybe like four agreed versions. "It can look like this, this, this, or this." And I think it can look like a billion different things. And I'm excited. I would like us to move in that direction. And I think that I think you're right, I think when we when we did have these little glimpses of like, who are we when no one's looking? Who can we be, who we want to be without that scrutiny or expectation, I think that there's a lot of, like rich things we can discover about ourselves and our relationships and I hope we can... for anyone that discovered that under the blanket of lockdowns, I hope we can carry that on. There's something really beautiful about getting to exist without... without that watchful gaze.

SARA: Yeah.

DANIEL: So --

SARA: So I'm thinking maybe we should take a short break. And when we come back, I want to talk more about the complications of kindness. And then just kind of like, you know, what you do in your normal everyday life. I think that'd be really wonderful to hear. So, we're gonna take a quick break, we'll be right back.

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SARA: Okay, and we're back. Thank you again to Rebekah for joining us on Read. Return. Repeat. We're just really excited to be able to talk to you today. So okay, next question. We live in an age of corporate nonprofits, social media, inspirational we'll call it voyeurism. Where charity and acts of kindness are more performative than really genuine. You talk about complications of kindness in your book. What makes kindness complicated? How do you feel about this now? You know, it's been a few years now, since you've written your book. And how have apps like TikTok changed this? You know, how can we differentiate between genuine acts of kindness and those that are just --

DANIEL: Kindness for clout.

SARA: Kindness for clout, yes.

REBEKAH: Yeah. Where do we start? I mean, I would first say that like that there's a chapter in the book called Complications of Kindness that we're sort of talking about. And it's a chapter that people get ruffled about. I think that there... people have that either, like, they're like, that's the best thing I've ever read, or I don't know how to think about this, help me. And so I think part of it is that we have I mean, like as a culture, we do have a really strong hold on our idea of kindness and our desire for like living in a kind world and wanting, wanting ourselves... to see ourselves as kind. And I think one of the ways that it's pretty easy for me to differentiate between acts of kindness and acts of would, what did you say, clout? What was it, Daniel?

DANIEL: Kindness for clout.

REBEKAH: Kindness for clout, yeah, yeah. Is like who, who is at the center of that story? Who... who are we, what is being celebrated or where did our eyes look? And I think so often, expressions of kindness really do have more to do with the person extending the kindness than the person on the other end of that. I think a lot of times when we think about kindness, particularly when it comes to disability, we think about helpfulness. Like that's maybe one of the first words that that would come up, like we want to be helpful. But I think the problem like fundamentally with that premise is that unless you know that person, you don't really know what is helpful, right? Like, you have to listen and learn a bit before you jump into that. And my experience as being a visibly disabled person is that a lot of people don't wait or listen. But that there... I often feel like I'm kind of like a moving rolling symbol of like, need for helpfulness and out in the world and I tend to attract a lot of that kind of that kind of attention. And that can be anything from like people -- I mean, like a lot of people like hold automatic doors open for me, which is a little funny, right? I mean, so that's a little harmless and silly, but like all right, I see what this is really about. Or sometimes that would be like people coming up from behind me -- this doesn't happen as much in the chair I'm in now because I hide my handlebars. But when I had handlebars, people just coming up from behind me, pushing me up a ramp. I'm like, "Who are you?" You know, so like experiences like that, you know, attempts at helpfulness not very helpful. And, you know, we can... we can, we can quibble about like the motives of those acts, but it seems like the very least they're not very helpful.

To me, when I think about kindness and disability, a word that comes up for me a lot is dignity. How can you hold on to someone's dignity and honor someone's dignity? And I think a lot of that has to do with looking to them as the experts, and as autonomous beings that get to determine, you know, like, empowering those people to be in charge of themselves and is a kind thing to do. But so often, I see both out in the real world and in the stories that we tell, so often, people with disabilities are used as like, props in stories about benevolent, kind people. And that starts with like, Tiny Tim inspiring Scrooge in A Christmas Carol like 200 years ago to, to like, viral news stories about like, the football player asking the disabled girl to prom. And... and a lot that's just like this great celebration of like, the kindness, look at these virtuous people who are trying to fix a disability. But beyond just like, maybe not even being helpful or who knows if that's really kind. It seems like it the... it doesn't even address things like stigma or ableism. Or like, why is it even worth a news story that this kid asked a disabled kid to prom? Like, why is that even in the news? What's the problem here?

SARA: We call it feel-good stories, right?

REBEKAH: Yes, yeah. And that, that's like the shortest like, like a quick, quick that's like, like puppies and kitties cuddling. It's like the kind of it's like, it gets so much attention. And you mentioned like TikTok and kind of like these social media accounts being maybe hosts for that kind of thing. And I'll... like honestly, I'm a little scared of TikTok. So, like, I don't know what's going on over TikTok except, but like, Mica shows me at the end of the day, and those are mostly just like, weird, weird videos that have nothing to do with this conversation. So I mean, I can imagine. I can imagine what that looks like over on TikTok.

DANIEL: It's --

REBEKAH: Yes, tell me what's happening.

DANIEL: Oh, it's just the the adversity on TikTok, it becomes like... like it's just, it's really complicated. Like, there's a lot of like... it seems exploitive a lot, like people with disabilities do oftentimes seem like, it kind of harkens back to like 1930s entertainment, and it's really kind of like cringy. And it's hard to... it's really complicated, because like, you want to like, oh, this person's out there. But then it's like, why is this being shared? What's the value here and things? And that seems like... and it's a really complicated thing.

SARA: It doesn't show up on my algorithm, so I don't know.

REBEKAH: Yeah, I don't either. I don't see it on Instagram. I see... I do see, like, some folks on Instagram, it seems like sort of making fun of tropes. So like, maybe there's the trope that's like, you have like the image of like, a young person with a disability. And the text says, like, my doctors told me that I would never have a future and I wouldn't walk. And then in the inspirational versions, like, and then that person is like, running, you know, like they... they overcame. And I see people making fun of that by having, "and I never did," and then they're living their full life in their wheelchair. You know, like I see some of that. I don't know, I don't know, it seems like there's potential for both, right? I mean, that's like, the scary thing about... the scary and wonderful thing about social media is that it has like... it can be the host for so much weird or harmful stuff. And then also can be the place where people challenge those very same things. And so it's... it's a Wild West, I don't know. It seems like, in some ways, what I like about it is that there is the opportunity for people to be subversive, they don't... there aren't the same kind of gatekeepers. So if we see the same things that are in mainstream media outlets, there is the potential for people to sort of go rogue and push against that. And I think that's great. I hope people do more of that, more and more and more of that, and not the opposite.

But I don't know if I answered -- oh, you didn't -- one of the other questions you asked was like if it's changed for me, my thinking on that has changed since because it's been a while since I wrote it. And I do want to say when I wrote the book, that chapter in the book, I was definitely coming at that, those thoughts about kindness from the perspective of someone who is visibly disabled, which is the person who attracts a lot of that kind of attention out in the world. And I did, I have talked with a lot of people since then with invisible disabilities and I kind of heard a lot of ways that that experience tends... tends to take an opposite form for people. So like, if I'm saying, I don't need help, I promise, no, believe me, I'm fine, leave me alone. A lot of people with disabilities, invisible disabilities, are often in the position of saying, like, you know, I really do need this support, I really do need this parking space, I really do. Like, please believe me. I know it doesn't look like I have a disability, but like, I have this specific need. And I... and so it's sort of like the opposite situation. And I think a lot of that has to do with sort of this impulse that we have to categorize people as soon as we see them. And we like feel like there's things that we know about them because of whatever we see or notice visibly. And I think that that impulse, as human as it is, is just so counterproductive and harmful.

Like I think that this... I mean, this is such an old idea. I'm not saying anything new here. But when we look at people, we... that doesn't, like we don't know anything about them, right? Like, we see someone with a visible disability, or we see someone who looks like they don't have a disability, that doesn't really give us very much information at all. There's so much more behind both of those figures that you're looking at, right, that can mean anything at all. And so I think just the practice of taking a beat and holding off on our assumptions. Being curious, I think all of that is, these are all more general genuine expressions of kindness because it allows people to show you and and lead you in getting to know who they are and what they need and what they have to offer as opposed to you jumping in and deciding before, you know, you've had that beat to learn. I think... I think that the root of both of those experiences of not being believed that you need help or not being believed that you do you need help, the same thing, just a different form. So that's changed for me. I thought a lot more about that since the book came out. And that feels worth noting. And I would probably have a whole extra couple of pages about that in... in a different edition. But yeah, yeah, kindness is complicated.

SARA: Yeah. I was just thinking, I was like, how would I describe... it's complicated, yes.

REBEKAH: It's complicated, yeah.

DANIEL: So you've had quite a success on Instagram. It looks like you're what, you're up to about what, 58,000 followers. Instagram has been a valuable tool for a lot of authors to engage with their audience. I think of like Rupi Kaur is a good example of that. But also means that you're very personal, you have to like, share a lot of your life and sometimes very personal details about yourself with the rest of the world. How big of a part has Instagram played in your development as an author?

REBEKAH: Yeah. Well, I would, I would say that in a lot of ways, I think that Instagram was just like, where I found my voice. Just like from the perspective of just purely being a writer, there's something really cool about getting to write a thing and share it immediately and have people interacting with that piece of writing right away. And also just having this consistent spot where you are... where you're honing your voice and you're figuring out how to tell those stories. So as it just like, in my skills as a writer, I think that was a really valuable experience. That's also how I met my literary agent. So that's kind of like a pretty quantifiable part of the journey. She -- it was, like, about three years into writing that she reached out to me and she also had a disability, Laura Lee Mattingly from Present Perfect Literary Agency, and she, she just saw that there was kind of the seeds of a book in what I was doing. And so, so all of that was really important in different ways.

And I think, you know, unfortunately -- and I do think it's unfortunate -- the publishing world is is just more and more interested in in what kind of following you have, right? Like who are your built-in readers? And I think it's really hard to get a book published without some of that followings built in. Not that it doesn't happen, but it's just getting harder. And so I think the fact that I did have a good chunk of people following me at that point really helped just get the book deal. So I guess it's been pretty valuable all the way from like, just the writing itself to the getting published. But it is interesting to figure out what that means to me now. I think it has, that space has changed for me in some ways. Just as it's gotten bigger, it doesn't, it doesn't feel exactly the same. When I was writing before, it felt like I knew who those people were, you know? Like we interacted enough that I knew, like some, like familiar people. And there are a few people that are familiar now. But so many of those people I don't, I don't know. And so that just changes the way that it feels. And Daniel, you were mentioning, like, you're like, often sharing really personal things about yourself. And I do think that since so much of my stories these days are around motherhood, there's also that extra layer of like --

DANIEL: Oh yeah.

REBEKAH: Like, is this a story that I can tell and how much of my son do I want out online? And should his face be in it? And you know, like, just like, in a picture and... and in what parts? Like, what do I want to share that is mine to share? Even though a lot of times, it feels like we are one and the same. We're not. He's a separate person, right? And he's gonna grow up and be able to read those things. And how do I feel about that? And there's just, it just has changed, it's changed in a lot of ways. And I, I really value all that it's given me and want to find a way to be in that space that feels good. And I'm kind of working on that. But it definitely feels different. So I think the main thing to me more than anything is that if I'm going to ever show up in that space, it has to be a way that feels honest, has to feel true and genuine. I don't want to ever use that space for anything that feels like a game, or like, I don't know, like, you know, there's lots of ways to use a social media account. But yeah, I don't know. And, you know, algorithms change everything too. So I don't even know when I do show up, who sees me. But it's definitely evolved. And I will be forever grateful for the gifts that I have gotten through that space. You know, those don't go away, the gifts that have already been given through that space: learning to be a writer, finding an agent, all of that doesn't... that doesn't go away just because the space changes.

SARA: Yeah, for sure. You say that Instagram helped you found your voice. Has writing, the act itself, always been an outlet for you? I mean, when you were growing up, little Rebekah, did you always imagine that you'd be a published author?

REBEKAH: You know, I don't... I don't know if I so much imagined that I would be a published author as I just thought I would be near books.

SARA: Okay.

REBEKAH: I did, like my sister and I when we were very little, we had this play house and we we did decide we were going to like make a whole library of books in that house. So we were like, very busy. It was like the ‘90s so that was like the perforated edges from the printer paper and you would like short papers and then take off the edges and like make our own little books. So we had -- and we had like little gold library cards. It was called like, the Gold Rose Library and we drew like the whole thing.

SARA: That's cute.

REBEKAH: Yeah. And you know, and then like, through elementary school, I had like a really fat notebook that I would write very angsty poems in, you know, like, we'd be at theater in the park and I'd have my notebook and I'd be by myself looking at people writing poems. So I was a really cool kid. And then, I mean, my undergrad is in creative writing. So I was writing, when I was an undergrad, I was writing really angsty sort of slipstream fiction, maybe Y.A. stories. And I had a lot of fun doing that. I mean, I think in retrospect, it's really easy to see that I was just writing story after story about outsiders, like people who didn't belong and didn't fit, which is interesting for me to look at now and say, like, that was a theme, that was a pretty important theme to me. And I think a lot of that had to do with disability in ways that I didn't, I didn't register at the time.

And I, eventually I kind of had put the idea of like, creative writing aside. I was more going like the literary track. So I was getting my... I got, my master's thesis was on Moby-Dick. And I was studying 19th century British and American literature. Pardon me, my cats are -- I don't even know what my cats are doing right now. Sorry. Yeah, I mean, I was on... I was studying 19th century, like big fat sensation Victorian novels and stuff. But I think at that point, so I'm still writing but like at a very different capacity. And I, I loved what I was doing. But I didn't really know why I was doing it. I didn't know... I did, it felt like I was sort of sacrificing my body and soul and mind and finances to this quest that was fun, but like, what's the purpose behind it? And I was about to drop out of graduate school when I discovered creative nonfiction and disability studies. And so I do think that there was always some kind of writing and expressing through writing and trying to understand myself through writing, that sort of eventually came to this place where all the pieces sort of clicked into place. And it felt like, oh, this is exactly what I should be doing. So yeah, yeah.

SARA: That makes sense, though. I feel like that's kind of how I fell into librarianism.

REBEKAH: Really?

SARA: Yeah, just it happened. You know, things made sense so I just followed this random path.

DANIEL: Yeah, kind of the same feel. Like, I need to do something. Because I was on a track to having like a film degree.

REBEKAH: Really?

DANIEL: Yeah. And then I was like, well, my parents were always very, like, very adamant. Like, you have to get your master's degree, you have to get your master's degree. And so it was kind of like an obligation. I was like, okay, well, I took the LSAT and I didn't do the greatest. So let's see what else I can do with it. I was like librarian. Actually, I would have been a terrible lawyer.

[LAUGHTER]

SARA: My parents were like, what are you going to do with an English degree?

REBEKAH: Oh, so I'm like kind of jealous, though. I feel like being like, like a podcasting librarian is the coolest job. What would your childhood selves have thought?

SARA: No idea.

DANIEL: No idea.

SARA: Podcasts wouldn't even have been on my radar at all.

DANIEL: It's like a radio show on the internet?

[LAUGHTER]

I do want to say I like the fan art that you are getting, that you've been getting on your Instagram. That's so cool. That's so cool.

REBEKAH: Oh, thank you!

DANIEL: Yeah, it was... yeah, because you don't see a lot of fan art for like people. Like it's only for fictional characters.

REBEKAH: Yeah. Yeah, I had there's a new one I need to put up there. There was someone that did like a line drawing – isn't that the kind of drawing where you have like one line and you never lift your pen up and you're not looking at --

DANIEL: Yeah.

REBEKAH: You're looking at the picture. And someone did that of me holding Otto. It was really cool. I actually, I have it up on his room now. Really cool. I know. People don't do that a ton, but every time they do, I'm like, I'm documenting this. This is the coolest. Fun.

DANIEL: So when you're not writing, Instagramming, and raising a child, what do you enjoy doing?

REBEKAH: Oh, I --

DANIEL: Do you play the piano?

REBEKAH: No, not really. This is my... this is my childhood piano and my parents were gonna get rid of it. I was like, no, so I found a place for it. Mica actually, my... my partner, went to school for music, like his degree is in piano composition. He can play the piano and that is very fun. No, I... you know what? I feel like I this is something that I have been thinking about a lot because you know how your life slowly gets busier and busier and you keep like adding more and then the things that you used to do for fun have smaller and smaller places in your life? And I really want to start turning, turning that back. But like so like for me, I love making things with my hands. So like painting and decoupaging have always been things that I like, quilting have been things that I love to do. I haven't done a ton of it in a while. But actually, that pot is one of my – I don't know if you can see it, that flowerpot is one of my decoupages.

DANIEL: Oh, cool.

REBEKAH: Thank you. Or like cooking, baking. I just love making things with my hands. And that can look like a lot of different things. But... and listening to podcasts, I'll tell you that. I do listen to a lot of podcasts and audiobooks. But yeah, I want to be... I want to do more. I want to get back to more of my like making things with my hands. This house that we moved into, the woman who lived here before us had like planted like all of these gorgeous flowers. I know nothing about them, but like trying to figure out how to like take care of them and I've gotten my hands very dirty this... this spring and summer. Like that kind of thing is, it feels really good to me.

SARA: So do you have any other projects coming up? Writing projects I guess is what I was going for.

REBEKAH: Gardening projects, no.

SARA: No, I said writing projects.

REBEKAH: I do have a children's book that's gonna come out. I think that it's slated to come out – is slated the right word? It's scheduled to come out, it's supposed to --

SARA: "Slated" is fine.

REBEKAH: 2024, so a little ways, but I'm really excited about that. I am not illustrating it. But I'm excited to see that come to life and to like, read that with kids. And I, you know, another thing I've been plugging away at, and who even knows what will happen with it, but the book was optioned right after it came out. And so I've worked with a couple of other co-writers and have been pitching shows sort of inspired by the book. So we've been, we've been at that for a while and we've pitched that a lot of places. But I'm still hopeful that there can be something. I just feel like we need more complicated stories of disability on screens, and I would love to participate in that somehow. So you know --

DANIEL: That would be amazing.

REBEKAH: Wouldn't it be fun?

DANIEL: Yeah.

REBEKAH: It should happen. So we'll see.

SARA: I mean, yeah. Representation in all its forms. Absolutely.

REBEKAH: Yeah. Yeah.

SARA: That'd be really cool. We'll look forward to that.

REBEKAH: Yeah, well, keep your fingers crossed.

DANIEL: You're like the third person that has like a developed like, was working on TV show that we've interviewed.

REBEKAH: Really? Is this a new thing?

SARA: No, I mean, I think it's just that we're interviewing really cool people.

DANIEL: Yeah, so it's really cool. Yeah.

REBEKAH: Fun, it's a whole new, it's a different world. But I am having fun and learning a lot.

SARA: Awesome.

DANIEL: So you're a disability activist. Stories do a lot about raising awareness of the challenges that... that you and others face in everyday life, but also the celebrations of just living a normal life and the desire to be treated like a normal person. As a person with a disability, what would you like non – more non-disabled people to know?

REBEKAH: We can say a lot there. I think one of the things that comes to mind is sort of what we were talking about earlier, like... like assumptions that we often make when we see someone and we assume, you know, I don't know, see a wheelchair and you think some kind of tragedy, some kind of triumph, you know, like some kind of pre-programmed, like pre-written story that kind of fills our brains with what that must mean. And I, I really do wish -- and I think this is part of why I want to write stories, I want more stories on screens -- it's just that, like, I really would like us to, like, break the bonds between those, the image of disability and those storylines.

Disability can look like so many different things, it can mean so many different things to that person. And that can change over time. And it can... and there's so many different stories that folks with disabilities can, can live and be a part of. I think so often when you do see stories of disability, so often the story is that person's disability, you know, when we see stories and on screens or in books, and I think in real life, that person is living so many different stories and disability may or may not be in the forefront of any of those. So I guess it's kind of feels like a little bit of a cop out answer because I'm saying like, the thing I wish that you knew is that you don't know anything.

[LAUGHTER]

I don't know. It's just like there's, this can mean so many different things. This can look like so many different things. disability can be, can show up so many different ways in a person's story. And I just wished that we moved through life and live through life that way with curiosity And that those assumptions would just fall away like dead leaves on a tree.

SARA: But not grow back in the spring.

[LAUGHTER]

REBEKAH: Important point.

SARA: But I think... but I think, you know, I think that's a really good lesson for us. You know, take a beat. Don't make assumptions about people, don't just automatically grab the handles of somebody's wheelchair and push them up a ramp.

REBEKAH: Don't ever do that.

SARA: Don't do it. You know, it... just regardless of where that feeling comes from, like just take a beat and be curious. So I think those are good lessons.

REBEKAH: Yeah, that sounds good to me.

SARA: Now, are there any other organizations or disability advocates that you would like to give a shout out while we're while we're talking about it, who were doing a great job making positive changes or, you know, other resources that you might want to share with our listeners, for anyone wanting to learn more?

REBEKAH: Yeah, okay, there's a lot. I mean, like if we're just thinking... let me, let's let's dip our toes in different pools. Like one person that I'm very fond of and have been excited about is, well on Instagram I think the account is called Disability Reframed. That is Ashley Harris Whaley. I wrote her name down so I wouldn't forget. Ashley Harris Whaley has an account where she just really breaking down a lot of basic ideas and assumptions about disability and it makes a lot of sense. She's a beautiful writer. So I like what she's doing over there. In terms of what I tend to be like, really excited about is the... is like books. So one of my favorite books that I read recently that I think everyone should read is What Can a Body do? Sara... what is it, Sara Hendren I think is her name.

SARA: We'll look it up before we publish.

REBEKAH: This wonderful book. I mean, it's like this most gorgeous like mind blowing. I mean, I think about disability and design a lot. But this book is just kind of looking at our built world and asking questions about how we've arranged things and how we could arrange things and with so much curiosity, and just the most exact sort of, like gorgeous prose. So I'm like, that book is so exciting to me. I'm like pointing up there, it's on my shelf. I'm really excited, I haven't read it yet but Alice Wong has a new memoir that just came out. Alice Wong is a very big deal in social justice. And, and she was the editor of Disability Visibility, which is a collection of essays written by folks, first-person essays written by... a whole lot of folks contributed to that collection. And they all have different disabilities, different perspectives, different experiences. But so there's that book, which is definitely worth reading. And also, I'm excited, Alice Wong's memoir, it's going to be amazing.

And then, let's see, what else? I'll just do a big shout out to Ability KC in Kansas City. I think that they're doing really amazing work. That's an organization here that does a lot of rehab for folks. And they have a... yeah, they're just doing really cool things. And I love the people over there so I'm shouting them out. Yeah, there's a million people on Instagram and I'm assuming TikTok and books we read but those are some of my favorites these days.

SARA: Awesome. Well, if you think of any more that you want us to share with our listeners, we'd be happy to put those in our show notes. So you can just email those to us if after we're talking you, you think of any others.

REBEKAH: I can send you a lot. Do you really want me to?

SARA: Send us what you want, we'll do it.

REBEKAH: Okay, cool.

SARA: You know, it helps to get more names out there and more people listening and learning stories. And I think that let's... let's do what we can.

REBEKAH: Okay.

SARA: The whole point is that of this of this category today is to learn about a topic that you might be unfamiliar with so there you go.

REBEKAH: All right. We could do that.

DANIEL: It was awesome talking with you.

SARA: Yes, thank you so much for talking to us today. It was such a pleasure. I really just can't wait to see what response we get from this one because I think it's going to be really interesting.

REBEKAH: Cool. Well, all right. Well, thank you both so much.

DANIEL & SARA: Thank you.

VOICE: The Wichita Public Library offers free programs for all ages. Our children's department offers storytimes for infants, toddlers, and preschoolers. For teens, there's always fun stuff going on from escape rooms to learning how to code. Adults can work on their job skills with our technology training classes, and can even get certified to use the library's 3D printers. No matter what you're into, there's a library program for you. Find out more by checking out our event calendar at wichitalibrary.org/events. Your Wichita Public Library.

DANIEL, VOICEOVER: And now here are a few staff recommendations for category four, a book about a topic or culture you are unfamiliar with.

BILL: Hello, my name is Bill. I'm a part of our youth services department and I'm here to talk to you about the book that fits in the unfamiliar category. The title is Jaco the Galactic Patrolman by Akira Toriyama. This book is one of our manga books out of our teen graphic novel collection. Since it is in the Japanese manga style, the book reads from right to left instead of the more familiar left to right format of western books. This makes it a little more of an adventure to read. The story follows a retired scientist named Omori who lives alone on a deserted island. His quiet life is interrupted when Galactic Patrolman Jaco crash lands his spaceship on the island and needs a more he's helped to repair it. Although Jaco was continuously pointing out to Omori that he is an alien, Omori sometimes finds it hard to believe. Omori's life is further complicated when he gets a visit from a government agent named Katayude while panicked about somebody discovering Jaco who is an alien, Omori isn't prepared for the message Katayude delivers: he must leave the island in one week. His stress is not helped by the revelation that Jaco has been sent here to intercept a violent alien that's on its way to Earth. The story is filled with fantastic silly humor throughout. It seems like every time Jaco tries to do the right thing, things spin out of control. It also has plenty of excitement, action, and a little bit of drama that makes it a nicely rounded story. It leads to a surprise ending that will thrill fans of the Dragon Ball series of manga and anime. The author, Akira Toriyama, is probably most famous for creating the Dragon Ball series that has been around for decades and spawned various manga and anime series such as Dragonball Z and Dragon Ball Super. It has also spawned a number of movies that are still being produced today. Jaco the Galactic Patrolman serves as a prequel story to the original Dragon Ball series. I hope you will be adventurous, step out of your comfort zone, and give this or any of our manga titles a try. For more information about this or any of our other categories, visit our website at www.wichitalibrary.org/readict.

MEGAN: My name is Megan and I work in the circulation department. My recommendation for category four, an unfamiliar culture or topic, is A Knock at Midnight by Brittany K. Barnett. During the war on drugs. thousands of people were unjustly sentenced to life in prison without parole. Due to the 100:1 ratio of crack versus powder cocaine, a majority of these people were people of color. This influenced the author as a young lawyer to begin fighting to free people like Sharanda Jones. Sharanda was a kind hardworking woman who owned multiple businesses. One day she was torn from her young daughter and sentenced to life without parole on her first-time drug offense after years of being out of the drug scene. Her sentence was purely based on the testimony of others trying for a lighter sentence. Thousands share Sharanda's story. Brittany K. Barnett works to free these people now that the lawmakers have agreed the sentences were too extreme. This has been my recommendation for category four. For more reading recommendations, please visit wichitalibrary.org/readict.

ZAC: Hello, my name is Zac. I'm part of the Technology Training department at the Advanced Learning Library and I've got a book I'd like to recommend that I think fits the unfamiliar culture or topic category for ReadICT. It's a Japanese manga series by the title of Goodnight Punpun, written and illustrated by Inio Asano. Goodnight Punpun is a coming-of-age drama story set in modern Japan and it follows the life of a child named Onodera Punpun from his elementary school years to his early 20s as he copes with his dysfunctional family, love life, friends, life goals, and hyperactive mind while occasionally focusing on the lives and struggles of his school mates and family. Now, Goodnight Punpun is a perfect example of how you shouldn't judge a book by its cover. When we take a look at the cover for Goodnight Punpun's first volume, you'll see a cute cartoon bird front center. That's actually our main character Punpun as a child. See, Punpun and the members of his family are in fact normal humans within the story. They're just depicted to the reader in the form of these cartoon birds throughout the whole manga while everyone else is drawn human-like. So far, this description probably makes the manga sound like a silly comedy story or something light-hearted, but I find this important to bring up because the biggest reason I'm recommending Goodnight Punpun is because of the dichotomy between the protagonist being drawn as a cute cartoon bird and the darker themes presented throughout the story such as domestic abuse, mental illness, and suicidal ideation. You won't expect any of those topics to be present in a store with a cover like this and that's kind of the point. The author, Inio Asano, once said in an interview that, "I wanted to take the readers coming to the book because they thought Punpun was cute and upset them. I wanted to say to the reader, here's a different kind of manga. Look at what kind of depths of reality manga can plumb." So with all this in mind, Goodnight Punpun is by no means a light read, and I wouldn't call it an entertaining read in the traditional sense either. However, it's one of the most beautifully drawn mangas I've ever read and you really don't know you're on a roller coaster of a story until it drops out from beneath you. So if you've never read a manga before, or maybe you're in the mood for something on the heavier side and not particularly feel-good, consider giving Goodnight Punpun a read for something unfamiliar. For more information on ReadICT, visit our website at wichitalibrary.org/readict.

SARA, VOICEOVER: That was awesome. I am so glad that we got to interview Rebekah today. It gave me so many things to think about and I hope it does the same for our listeners.

DANIEL, VOICEOVER: Yeah, I liked her she talked about ableism as a systemic issue. Also shout out to Rebekah's cat who made several cameo appearances during the episode.

SARA, VOICEOVER: I loved it. I just really, I thought that's great.

A list of the books discussed in today's episode can be found in the accompanying show notes. To request any of the books heard about today's episode, visit wichitalibrary.org or call us at (316) 261-8500.

DANIEL, VOICEOVER: To end up the show, staff member Ian we'll read a submission from our local short story program, a poem submitted by Eden Penny titled "If I Dare Breathe." To find out how you can submit your own work to this can be distributed through our short story dispensers, please visit wichitalibrary.org/shortstory.

SARA, VOICEOVER: This is one of the many short stories and poems you can get from one of our short story dispensers located at Reverie Roasters coffee shop, Evergreen community library, and the Eisenhower airport.

IAN, VOICEOVER: If I Dare Breath by Eden Penny.

If I dare breath, and I come back empty
Maybe I'll learn to hold my breath.
If the earth falls beneath, and my feet meet air
Maybe I'll learn to fly.
When thrown in water, I learn to swim.
When left in the dirt, I learn to fight.
In comfort, I learn nothing.

DANIEL, VOICEOVER: Thank you Rebekah Taussig for talking with us today. We'd also like to thank Megan, Zac, and Bill for their book recommendations for category four, a book about a culture or topic you're unfamiliar with. And where will we be without all of you, our listeners? Thank you so much.

SARA, VOICEOVER: Thank you for your support. To participate in the ReadICT Reading Challenge, please visit wichitalibrary.org/readict. Stay connected with other ReadICT participants on the challenge Facebook page. Find out what's trending near you, post book reviews, look for local and virtual events, and share book humor with like-minded folks. To join the group, search ReadICT challenge on Facebook and click join.

DANIEL, VOICEOVER: You can follow this podcast through the Anchor app or stream episodes on whatever platform you listen to podcasts with. If you like what you heard today, be sure to subscribe and share it with all your friends.

SARA, VOICEOVER: This has been a production of the Wichita Public Library and a big thanks goes out to our whole production crew and podcast team.