Ep. 15: When Kindness Gets Complicated: Rebekah Taussig on Motherhood, Messiness & Magic

Benjamin Thomas: Welcome to the Double Vision podcast. We are identical twin sisters who grew up with a rare retinal condition, which basically means we've had to do a lot of adapting. My name is Janelle and I'm the oldest by four whole minutes. So naturally I get to go first and I'm Joy. A lot of our life has been problem solving a lot of feelings and realizing that we're probably not the only ones navigating this. I work as a therapist and I tend to slow things down and look for what's steady underneath it all. And I'm a writer and creative. have a background in education and I navigate the emotional journey in real time. She does and we balance each other out. Janelle keeps one foot on the ground and Joy keeps things honest and alive. On Double Vision podcast, we talk about the social and emotional experience of being in a body. The stuff we all deal with, identity, belonging and self-trust. We talk about anxiety and overthinking and what it looks like to advocate for yourself and keep going, even when it's hard. We make space for the parts that don't show up on paper, but shape our whole lives. If you've ever felt like you're trying to figure out how to be yourself out loud, you're in the right place. Hi, this is Janelle and I'm so excited to share our recent conversation with Rebecca Tosik. Rebecca is a Kansas City writer who lives in a house of half-finished art projects, loud music, and a fussy family of tender-hearted snugglers. Driven by a lifetime of personal experience and bolstered by her doctorate in English from the University of Kansas with an emphasis in creative nonfiction and disability studies, she writes to Understand Reclaim. and participate in changing the cultural narratives we have around disability, motherhood, and what it means to live in a human body. She believes storytelling can change the world, literally. After almost a decade of teaching in the traditional classroom, she has pivoted to full-time writing and speaking. Author of the bestselling memoir and essays Sitting Pretty and the picture book We Are the Scrappy Ones, you can find her writing in time, on Instagram, and Substack. She travels the country speaking with universities, corporations, and medical communities about the power of disability storytelling and representation. From the very beginning, this conversation felt less like an interview and more like connecting with an old friend. We found ourselves sharing stories with so many common threads and themes around identity, embodiment, motherhood, resilience, and what it means to move through the world in a human body. It's one of those conversations that stayed with me long after we stopped recording. Before you listen, I highly recommend reading Sitting Pretty, the view from my ordinary, resilient disabled body. I truly think it helps set the stage for the conversation and deepens the experience of everything we discuss throughout the episode. And if you don't have time to read the entire book, you can read chapter seven as a standalone as we focus on stories from this chapter throughout the conversation. and make sure you stay all the way through to the end. One of my favorite stories she shares happens to be during our closing game, and it's such a beautiful final moment. This is Janelle getting us started today, and I wanted to begin by just expressing some gratitude towards you, Rebecca, for your work and how pivotal it's been, not only in my life, but in the lives of so many of the clients I work with as I've integrated your book kind of as like a bibliotherapy type of a. tool into my therapy work with clients adjusting to disability. were you aware that someone was using your book in therapy? No, no. I honestly am. Like you're saying that I'm like, wow, that is an honor. And I'm like rethinking what I wrote. Should it be in a therapy? I hope so. Yes. That's awesome. I'm so honored to think that it would show up in that space with you and your clients. Yeah. And I was curious, does it surprise you at all? that your experience as writing about your disability, being in a wheelchair, resonates so deeply with myself having a completely different disability as a person who's blind and also with my clients who have all different types of disabilities. What do you think it is about your writing and your stories that resonates so deeply with people with a variety of lived experience of disability? I mean, what a humbling thought. think on the one hand, would say it never ceases to shock me that anyone relates to the things that I write. Maybe it's because of that young adolescent, that younger version of me that felt like a little alien in the world. And I must be the only one because that's how it feels. And then at this exact same time, I think since I started writing online, I have seen that. connection over and over again. And while it does like surprise that alien child in me, the kid that felt like an alien, it always surprises me. There's also this other part that's like recognizing that theme or that pattern that there is something more universal or that connects on some different frequency. And I do feel really honored by that. I don't, it's interesting actually, there are ways that it connects. folks with all different kinds of disabilities, but I've also heard from people who are just ⁓ thinking about the experience of things like pregnancy or I've had a lot of conversations with people in like book signing lines who talk about like their own experience of what they would describe as fatness, right? Like their own experience in a fat body and talking about connecting from that angle. And that also surprises me. But I think Maybe there's something about the experience of living in a body and the ways that we can feel invisible or pushed to the edges or ⁓ there's something really deep about the experience of living in this world together in the particular bodies that we have. ⁓ I don't know, I feel like I'm using a lot of vague language to describe what that thing is, but there is something. deeper that I've noticed and does feel like magic, like something quite beyond me that I feel very humbled to be able to be inside of that frequency at all. You know, as long as it lasts for whenever it lasts feels like a little bit of, ⁓ it's an honor and a bit of magic to me. love how you're saying like that all humans, we're all living in bodies so we can all. relate to that. know, Joy and I first read your book, I think it was about five years ago, as part of our book club. And the other members of our book club are non-disabled, and they found it really relatable as well. So you just have this way of putting language and words to human experiences that really brings a lot of humor and lightness, and then also opens up for some deeper discussion and curiosity around. disability and just being in a body, not just disability, but being in a body. You're making my heart swell and my tears well. It's such an honor to hear you say that. It really does. It's very generous of you. And I hope that that's how people experience it for sure. That's exactly what I would hope and wish and want. This is Joy. And I really look up to you not only as a disability rights advocate, but also as a writer. I've loved writing since I was a child. the way that you use language and it's just really beautiful and I definitely aspire to that level of writing. I also used to teach English. I taught middle school English and I know you taught high school, right? High school and college? Yes, I did. Yes. ⁓ my gosh, middle schoolers. I feel like people who teach middle school are like the most special brand of people. Did you like it? Did you enjoy it? I liked aspects of it. It's not what I'm doing now. I'm still in education, but I definitely, ⁓ I think when I was, it was in my 20s, so I think I could relate and it was fun and I tried to make it fun. I I had also a lot of ⁓ adaptations I had to do in the classroom and different things that, you're always gonna have that one kid who kind of is gonna make life difficult and they're like, the disrespect, but then other ones who really. ⁓ you have that connection with and you feel like you're making a difference and everything. So immediately when I was reading chapter one, ⁓ I came across this quote about shame and the way that you worded it, actually wrote it down and if it's okay, I'm gonna read it. As soon as I read that quote, I was connected to the book and I just was like, ⁓ my gosh, this is a soul sister. I'm going to love this book forever. And the way that you put the word, you know, that. concept of shame into words. I know you talk so much about creativity and being able to kind of make things work and my vision is to the point where I can't read print anymore and so I have an extra earpiece within my earpiece right now to pull up this on my phone and listen to it with voiceover and read it. So we're going to see how this goes. In the midst of my verbal wandering, I inevitably reached for the word shame, the box where I had lived for so very long. The box I still find myself tumbling back into with less provocation than I'd like to admit. This is the shame that attaches so easily to a body that doesn't fit. The shame that buds, blossoms, and consumes when you believe that your existence is a burden, a blemish on the well-oiled machine of society." I just, ⁓ that still takes my breath away of that concept. And I'm just curious, how has your relationship with shame changed since writing that or over the years of really processing your stories. I don't reread my writing very often, but I think listening to you read that made my eyes well too. This is going to be an emotional conversation for me. ⁓ And I think maybe part of the reason that I'm hearing you read it made my eyes well is that I had this assumption that you understood that feeling. Is that right? Yes. Yeah, it is a both and because on the one hand, I think like being able to have these points of connection where with someone like you, who could read those words and say, me too, I felt that too. And kind of what we were just talking about a moment ago about other people relating to this work and getting to have these little glimpses of people saying me too, does change something. I think almost like on a biological, like wiring in my brain sort of way, I think there has been important shifts in me around ⁓ feeling shame or feeling like a burden on the well-oiled machine of society. And then there's also that slippery piece, which I name in that writing, which is that I can fall back into that more easily than I would like to admit. And what came to my mind when you read that bit was I wrote those words that you just read in like 2019, probably it's been bizarrely a long time. What a weird. thing time is. ⁓ I wrote those words in like 2019, which feels like a much younger version of me. But pretty soon after I wrote that I became a mom. And my transition into motherhood threw me into a greater shame spiral than I think I'd ever experienced before, maybe. ⁓ And I think part of it was the newness of trying to adopt a role for the first time, maybe with attached with like the high stakes of it and being perceived by others and feeling the skepticism of other people. I don't know. There's a whole recipe we could go into there. But I think writing that and having the experience of putting that whole book into the world where I'm like explaining ableism and I am giving the recipe for how this shame works and how to get out of it. You know, like it's just it's like I'm writing with the confidence of someone who knows and then it months later after the book came out. Well, actually, my son was born three months before the book came out. So I wrote those words, sent them to my publisher. It went into the bookmaking world. And then I had my son and then the book came out and I was in the middle of just deep shame or self-doubt, internalized ableism, all of those things. so I think it's a both and of like, think connecting with people who resonate with this experience. and seeing that we're not alone and for me to be able to recognize in other people that I don't want you to feel ashamed. I don't think you should feel ashamed. It helps me feel less ashamed. And also, that doesn't make me immune, I guess, or I can still be thrown quite profoundly, it turns out. ⁓ So I think I hold that in both hands, like this. this slow rewiring of my brain and also this way that I can tumble and being more mindful of that as I go, I guess. I don't know if that, you, either of you relate to that. Yeah, I love even how you phrase that, the slow rewiring of my brain, because sometimes I think we want these quick fixes, we want things to be better and we want to never have shame creep up on us ever again. And then, you know, the fact that it can come in this package, that's something as beautiful as motherhood and your child and then that can come along with it. I mean, that is it is so human. ⁓ And yet it's so surprising at times. Yeah, it was for me. I did not see that coming. What with my confidence of saying all these things out loud for the world and then, ⁓ here we are. I would also say that just to finish the end of. that story. I wouldn't want to leave it by saying like motherhood led me into a shame spiral. We're doing much better. We have adjusted. My son is, I was just saying before we started recording, my son is about to turn six. And I definitely am not where I was when he was first born. And I was first adjusting to that role, which is hard for lots of people for lots of reasons. It's definitely, ⁓ I don't know, this slow and steady trudge that is not free of stumbles, guess, or I don't know if that's the right analogy. with children too, you're kind of experiencing what how society sees you through their eyes then like so they are having to re experience. ⁓ they're you know, once they reach a certain age, I mean, I remember my daughter Lucy, when she was, you know, three or four years old. talking about, ⁓ I must have phrased it my bad eyes or something, because she was like, does Aunt Janelle have the bad eyes too? And just being this thing of like her realizing, and that's when I actually went to therapy was when she was little, because that's when I really, it really started to hit me. think up until then, it was like, you know, just something I kind of navigated. And then even since then, I mean, I don't think I needed as much care as when I. did during those early years. now, mean, Lucy's now 20. So, yeah. Wow. Wow. Wow. Yes. But you know, what I also like about that little, that bit of the story that you shared about her saying the bad eyes, I have felt as my son has gotten older, I think there has been this expectation that because he has me as a mom, that he will like be the perfect advocate or the perfect, you know, like the perfect little say everything right kind of kid. And I have felt very protective of him. ⁓ to feel like he needs to have that role, like that he just like somehow is like free of the societal, I don't know, expectations or tropes or whatever. mean, I feel like, I like my son, when he was like two, get, kids are always asking me about my wheelchair, ⁓ which I've been used to my whole life. But I kind of had this idea that I would have a son who would not do that to other people. ⁓ because he's used to wheelchairs, right? And we went to the farmer's market and, and I remember just like staring at him in shock as he like pointed to this person with a chair that was kind of different from mine and, just said like, what happened? And I was like, what? Like, how would you too? Like, how are you asking this question? Don't you know about wheelchairs? I don't know. I just, ⁓ I don't, he's not like this perfect little shiny. child of a disabled woman who's gonna know everything to say and is gonna have like, I don't know, ⁓ be the model for all of us. think it's all messy. And I don't ever want to hold him up on some kind of pedestal like that, even as I do think that he has insights that a lot of kids don't with this particular arrangement in his family. But anyways, I like knowing that other kids are also sorting things out. Yeah, I mean, there's a lot to sort out. is Janell again. There's a lot of messiness to all of this. And that's why I so appreciate, especially in your book, Chapter 7, really stood out to me the complications of kindness. And in particular, the story of the gala or gala, Joy and I were trying to decide which way it's pronounced. was a fancy fundraiser you went to. We're hoping you could kind of set the stage. You do such a great job in your writing of bringing some humor and really painting a picture of your lived experiences. Yeah, this is a complicated one to that. was complicated to write about. think because there is this man, my theme of my answers today is both. And I feel there's so much both. And with a ⁓ fundraiser like this, and I'm sure that your listeners will be aware of this kind of dynamic once I get into it. yeah, went to this. I'm trying to Gala. I'm how did I read it in the audio book? I don't even know Gala. And yeah, it was like everybody was dressed fancy. And the point of it was to raise money for a nonprofit that does a ton of great work ⁓ in my city to create like accessible playgrounds and accessible like they they have like a parking space campaign and they do a ton of amazing stuff. And so I was excited to go to this event. And then as time went on, as the evening progressed, I started to get like this weird niggly naggy feeling. ⁓ And one of the first things that I noticed was like there were no other visibly disabled adults there. I was the only wheelchair user, which started to feel a little strange. The thing that was the hardest to watch as someone who was like once a kid in a wheelchair, right? Like that was the way that I moved through the world from the time I was six years old. so the entertainment or sort of the like event part of this gathering was kind of parading these kids onto a stage and they were kind of put in the position of like asking all of these rich people for money or at least like. I think that was the setup, right? And there were like, yeah, it just created this kind of icky feeling of perpetuating some of these tropes about ⁓ what roles we play as people with disabilities and starting so young and thinking about what that does. Just, you know, like my own child brain of being in that position as a kid as well of like... these roles that we're trying to hold up and it's for a good cause and that's a great way to motivate people to spend or share their money, right? Like what makes someone donate faster than like the image of this kid in a wheelchair that was asking for money? I mean, it's effective and then also it's sort of icky and I hope I'm summarizing this experience. Yeah, you are. It's been a while since I read it. I wrote it. yeah, sort of the layers of this and as someone I don't know, sort of recognizing that experience from someone who lived it as a kid with a lot less awareness of those dynamics, right? Like as a kid, you're not necessarily protecting yourself in the same way that an adult could see the whole situation and kind of want to protect someone younger from being put in that position. ⁓ yeah, it was a complicated experience for me and I had a of feelings about it. Yeah. Well, and what's something that really stood out to me too is how you wrote You started to write or draft an email to, I the person who had created the event, and then you wrote that you never even considered actually sending it because not wanting to complain, essentially, about someone who was doing some really good work. I think what it brought up for me, I mean, so many of your stories brought up my own stories, but I'll share briefly that when Joy got her first guide dog quite a number of years ago, I was so excited and I flew down. to surprise her at her graduation in California. Before the actual graduation, I took a tour of this guide dog campus. It's a huge organization that does amazing work. kind of leading up to the actual graduation event, I already had an experience of ⁓ on the tour, there was a woman who was very excited about the animals and the wonderful work these animals do. And she was talking a lot about her estate and how she couldn't wait to. donate to a full estate and how does that work? like, there's like eight of us on this tour. So she wanted to make it really clear that she had a whole estate. And then she's like asking all about the animals. And then the person giving the tour gave a statistic about how many guide dogs are provided and how many people in the United States have sight loss. And then she goes, ⁓ that is so sad. And I was standing right there with my cane. So I'm already having kind of like what you described, like that icky feeling. And then that sort of builds till we get to the actual graduation. And they did such a ⁓ wonderful job with it. There's just so much thought was put into it. And at the graduation, they started to show this video that they had clearly, they had had a production company put this together. It was really well done. And the video part wasn't working though. Only the audio would work. So they ended up deciding not to show it at all. As the only member that I was aware of in the audience that also had blindness that all the students were up front including my sister I was really taken aback by that decision and and who knows maybe there was more that I didn't know about why it wasn't being played behind the scenes But I started to write an email similar to you and then thought this is ridiculous I don't like I'm in a complaint to this organization that does this amazing work and yet I left that experience feeling like gross, like you put in your book. And so I guess wanted to illustrate, like we've been talking in this conversation how much your writing and our work, and I's work are around being in a body. And at the same time, when you live in a body that's disabled or in a disabled body, there's experiences ⁓ that are different than people in non-disabled bodies that. we don't always have words for, but we know when something fills off. there are layers to that story, Janelle. ⁓ That was a whole experience. And especially with the backdrop of the joy that you were feeling for joy in the middle of it. Wow. And yes, that feeling of like, how can I complain about it? It's interesting hearing you tell that story because it's putting myself in your shoes or like the thread that feels similar. to the story that I shared is like, this feels like I'm being such a nitpicky, like I'm pulling apart a tiny detail when you do so much big good work. And I, in hearing you describe it, it's always easier for me when I think of, when I hear someone else's story than my own, but it's easier to see like, ⁓ but that's not a small thing, you know? Like that does feel bigger when I hear you tell the story that. And also it's like, easy to minimize it because I think we have, I don't want to project onto you, but for me, minimizing my discomfort is like what I've been doing since I was a child, know, you know, like minimizing my own experience and minimizing exclusion and minimizing stairs and minimizing invasive questions is like what I'm, my default position is. So. Yeah, don't know, listening to you tell that story is like, I'm like, yeah, you should write that email, which is like, but I'm not gonna write mine. This is joy. And I think I mentioned something to the head trainer. And I think he was kind of like, ⁓ yeah, I guess we didn't think about that. We could have just showed it or something like that. But it was kind of a little bit dismissive. But also, you know, they're probably thinking what's the big deal. And I think that kind of leads to what I've heard you say in other podcast interviews about this this book and how it sounded like some of the biggest reactions were about this chapter and the complications of kindness. even from family members who are like, what is the big deal? And I can like picture in my head certain family members being like, you need to be humble. Is this your pride not letting you know, like it's, it's, it's, it's different for people. Like you said it, I think I heard you say once that it was like kind of these two groups of people, one who had experienced this and another who hadn't. And so it's, kind of is two different camps. And I think the story that really stuck out to me personally is the one about you being prayed for even after you had declined to be prayed for in a cafe, in the middle of a cafe, because ⁓ something really similar had happened to me. And I think that's, to me, that's what distinguishes for me a good book that I'm reading. And then a great powerful book is one that helps you. you get into the person's story and you're in it with them. But another one helps you go back to your own stories and reprocess them. And that one, when I read this five years ago, it immediately brought me back to five years before when I was at a Barnes and Noble with my 10-year-old daughter. And we were just minding our own business and shopping and trying to buy little calico critters for her little sister, unaware that people were watching us and a woman sauntered over. ⁓ and very similar to your story, which I would love for you to recount for our listeners, but, you know, asked to pray for me in public. And yeah, well, I'll let you share your story. And then I want to tell you the end of mine because it was kind of interesting. I want to know. Yeah. And ⁓ joy, I've yet to have that experience in front of my son. I don't even I feel like shaky even thinking about it. Like with rage, I know it's like I don't know what I'm to do. If, when. I mean, it used to happen to me so much more often. Maybe I'm just not out in the world as much. I don't know. Yes, the story I recounted in the book. Yeah, I was grading papers in a coffee shop and this young, like beautifully angelic looking young woman, innocent and sweet, ⁓ came up to me and asked if she could pray for my healing, which for context, I just have like very deep roots in that world and experience. Tell me if I wrote about this in the book. I don't even remember if I did. The first time it happened to me, just for context, was when I was five. And ⁓ this man was redoing the floors in our house. his wife heard about me and wanted to come pray for my healing. And she came and put her hands on me and was doing her prayer and then told me to get up and walk. And I tried and fell multiple times. That was the first time. And then my mom, I don't remember this very well, but my mom said that after she left, I like was on my tricycle, which I usually would pedal with my hands as a little kid. I went all over the neighborhood with this little red tricycle. And I came back inside and I was like, mom, I think I can kind of pedal a little bit better. So just like. That's the beginning of this like ongoing regular experience that I have had. ⁓ in the book, I guess the story I recounted was in a coffee shop. I'm in the middle of grading papers, as is the case with all of these stories that I'm sure we could all tell. I was in the middle of living my life like you were with your daughter. Like we're just having a moment. I'm living my life. It's a great day. Having a good time and not longing for anything to be different. Yeah, this young woman comes up to me and ask if she can pray for my healing. And in my mind, I'm thinking like, it's so singled out. Like, if you believe in the power of prayer, surely I'm not the only one who needs it in this room. But there's lots of things that people are, like every single person here would have something that maybe they would want you to, know, like something you could beam up. ⁓ But. So I'm already defensive and I think I was like learning at that time. was like trying to create boundaries around these kinds of things. And I said something like, ⁓ no, thank you. You know, like with my sweet smile, no thanks. And she said, well, can I just pray for a blessing? And then it was like, well, okay, sure. ⁓ Cause I think I, I don't know. ⁓ My ability to wasn't taking no. She was not Yeah, she wasn't taking no and I felt bad for insisting that this, you know, she was just had this like, innocent sweetness to her. And I felt like I was just being like the cranky. I didn't want to be the cranky mean lady saying, no, get away from me with your blessing. I said yes. And then she ended up praying for my healing and then saying, whatever that looks like in whatever capacity. So it was like this like little side step sideways door towards like, I'm going to pray for you healing anyways. But, um, and it felt so bad. I mean, I just, you know, she leaves and I just felt like, shaken and demeaned and embarrassed and right. It's like this busy coffee shop and all these people are watching. so now I want to know, Joey, how did your story? What did you say? Well, same within the middle of the Barnes and Noble. I felt my body say no, but I guess it's the people pleaser. Again, you don't want to seem rude. mean, someone's asking to do something nice. But what's interesting is when I was reading your story, I asked Lucy than a teenager, so five years later, hey, do you remember that? Because I was trying to remember, I kind of blocked it out, like what happened. She said, ⁓ yeah, mom, it was so awkward. And then she was like, I just remember asking you on the walk home, do you want to be healed? And I thought, ⁓ my gosh, here's a 10 year old asking the question that an adult and everybody should be thinking, like that should be the main question. what, you know, do you even want to be healed? I... And I said, how did I answer? Because I'm not remembering any of this. she's like, And she said, well, you said that you wouldn't have Roja. That's my guide dog. you wouldn't have so many of your friends in community. And that, yeah, while you would want to, on certain days, see better than you do, that ultimately you don't know if you would change anything. And I said, ⁓ yeah, that is kind of still how I, know, but I was like, gosh, what kind of message did that send? Even on the way home, she knew that I was really kind of shaken by this, that I allowed somebody to lay hands on me to do something that I was uncomfortable with in front of my daughter. And I think that's more of like kind of the sadness I felt when I reflected back on it, like, gosh, what message did I send about people pleasing? and allowing somebody to do something you're uncomfortable with because, you know, I think she- it feels good for them. I she said too- the heart of both your stories, ladies, is like this idea of what someone else is wanting and that's what we were really exploring in our last episode where we shamelessly begged Rebecca to come on to this podcast. We were talking about like helping being about- the other person and oftentimes not even taking into account the person you're helping and what is their experience like. Right. Which is why it's interesting that people get so mad about this chapter. feel like it's very revealing because the idea is like if you really if it's really about helping other people don't you want to know how that's experienced like what the impact of that is. There are definitely people who feel really threatened or like. offended. ⁓ Or maybe it's sort of this like weariness of like, another thing that I am doing wrong that I, you know, I'm being chastised for, or another thing to keep track of. don't know. But I definitely experienced a lot of people who are like when that when the book came out, that chapter was actually reprinted in time. And I remember They posted it online and I remember one of the comments was like, ⁓ are you serious? Like we can't even be kind now. And it's like, if that's what it was, but that's what they took away. Yeah. Yeah. Yeah. mean, I guess it's given the content of, and the moments that are being described, I guess it's not that surprising, but it does, it is revealing to see kind of that reaction. I think a lot of us, myself included, really want to think of ourselves as kind people and people who do kindness. And honestly, I do want to live in a world where we are kind to each other. That's really important to me. I want us to offer that to each other. It's just a consideration of what that actually looks like might be different than what a lot of us have imagined for long time. Yeah, and just the reality that we all need help and that we all give and receive kindness throughout our lives. part of being human, and yet there are some complications to it, as you so beautifully write about. know, one thing that has been interesting since the book came out reminded me when you just said we all need help at different times in our lives. One of the things that's been interesting is that I have had a lot more conversations with people who have non-apparent disabilities after I wrote this chapter. And it is interesting that in a lot of ways, the way I describe people's reaction towards me ⁓ is kind of flipped for some people who have non-apparent disabilities. if people are clamoring to help me and assist me, a lot of times what I've heard from people is that if they have non-apparent disabilities, a lot of times people don't believe that they need help. so it is this, I think the ask of it isn't like, so don't offer to help people. I think it's more about pause and witness the person in front of you and believe them when they tell you that they do or don't need help. I think it's about like actually being present with people and not like seeing people as stereotypes or like the caricature you have of them in your head, whether that's like, they don't need help, look how capable they look, or they definitely need help, because look at that cane or look at that wheelchair, you know, whatever it is. The assumption, the assumption. Yes, yes. Either in any direction, I think it's like. It's like learning to see people as individuals that we don't know that much about yet and looking to them to help us understand, I think. Yeah. And what I'm really hearing in that too is just believing other people. Like I work with a lot of clients with chronic pain. It's like they're oftentimes don't feel believed or helped. so believe people in both directions. Like ⁓ when they say they want support or when they say they don't want support, they're expressing to you what their needs are. Well, and you never know what people have going on. I I was on this yoga retreat recently and I stepped on someone's mat and as I was walking in and I didn't have my cane with me and she's like, you're walking on my mat. And I was like, ⁓ I'm so sorry. And then later she saw me with my cane and she came up. She's like, I am so sorry. She's like, I had no idea, but I was thinking, why don't we all just give each other the benefit of the doubt and a little bit of grace, whether we know what's happening or not and just assume that people aren't trying to be rude. Yeah, it's yeah, I think it is is about all of that. Yes. And I think like, I am very guilty of this as well. I think there's something like almost like evolutionarily built into us or something that's like, able to make really quick assumptions about people like that's how we move through the world. And I think it's just like training ourselves to slow down a tiny bit ⁓ and see the humans next to us as like actual complicated human beings with a lot. that we don't see, like a lot that we don't pick up on right away. And we have to listen to each other. I love what you're saying about slowing down. think that's one of my favorite parts about being disabled is just how it forces me to slow down in so many areas of my life. Yes. Sometimes it's frustrating. And also I'm like, this is so good for me. This is exactly what I need. This is how it, yes, I'm so glad that I'm being pulled to slow down even when my impulse would be to go faster, faster, faster. ⁓ Slow is good. I would love to hear what you have going on now. I think you just published a children's book, right? I did. That was yes. ⁓ my gosh. Was that last year? When did that come out? Yeah, it's called We Are the Scrappy Ones. It started out as a poem that I wrote for this group of kids. I hung out with a group of teenagers at a camp for teenagers with disabilities who are like gearing up to make that really intimidating leap from childhood to adulthood, kind of preparing to be more independent. And I hung out with them for an afternoon and we were talking about a lot of different things. But I noticed that anytime we talked about disability in any capacity, the of the air in the room shifted and everything, all of our language turned into like medical jargon. And we were all talking about like diagnoses and surgeries and you know, like all of this. medical stuff. it was interesting to me because it actually really reminded me, I hadn't thought in a while about how that's exactly how I learned to talk about my body growing up was like, through this really medical lens. A lot of us who have disabilities, acquire disabilities, a lot of times we learn about that embodiment through medical people who explain it to us in medical jargon. And so I wrote this poem, to this group of kids because I wanted to think like, I want to invite you into a group that is vibrant and interesting and varied. I was trying to think of what would be a word that I could use to describe people who move through the world with disabilities. And that felt like a challenge because there's a huge range of experience, know, like disability can describe anything from like, traumatic brain injury, epilepsy, wheelchairs or low vision or whatever it is, right? Like could be so many different things. And I was like, what is the word that could describe a group that's that varied? And I came up with the word scrappy because it felt to me like the one, maybe if there's one thing that all of us in this giant sprawling group have in common. is like some kind of mismatch with between us and our bodies and minds and the world that has been built around us. There's some kind of mismatch. And I think that surviving that mismatch leads to a certain kind of scrappiness. And that scrappiness can look different for different people. But I think there's something inherent that like kicks in. If you're going to survive this mismatch experience, then your brain figures out ways to do that. And I think I see scrappiness in the people in this community all over the place. I wrote a poem. The first line of that poem was, are the scrappy ones. And I wanted it to just sort of be like an anthem or a song of belonging for the kids and young people and whoever. Oh, grownups can read it too. But I wrote it for like a younger audience to be sort of this anthem of belonging. I love that so much. And it's so true. And it kind of makes you sit up a little bit straighter as someone with a disability of like, I'm not, there's not something wrong with me. I am scrappy. And I could be creative and curious and all of those things that are not jargon that are used in the medical model. And I've really appreciated hearing you. I've heard you on different podcasts talk about how there's some validity without the medical model. that saved your life at one point. But then also we can go on to talk about these other models that are so important in how we frame things. So this has been so great. Yes. Thank you for saying that. It's not just that like, ⁓ I wish that doctors had never been in my life. Like, of course I do. They've been wonderful, saved my life and helped me manage pain and all kinds of things. ⁓ But it is interesting that it seems like that is kind of the predominant. lens that a lot of us are handed. And there is so much to this experience that goes well beyond like medical care. That was my attempt to bring some of that in. It's it is complicated. It is complicated for sure. Well, we have really enjoyed our conversation with you today. Again, we have so many more questions, so we definitely want to have you back on a future episode. But before we close, I don't know if you're familiar with this little game that we sometimes do with guests towards the end. today, we had Joy prepare just one would you rather question to close out the podcast? Yay! On like a typical weekday with your son, would you rather watch endless repeat episodes of a children's show that drives you bananas or go to library story time and have several people in a row talk to Otto instead of you or tell him how inspiring his mommy is? Oh no. Oh no. I put you in now. It's really tough with these would you rather. They're equally cringy. Today, I am feeling like I'm surprising myself because I'm feeling like the library hour is what I would choose. And I'll tell you why. It's because of what happened yesterday. I went to the bookstore with Otto yesterday. It was the first time I'd ever had an experience like this with him. So this little girl is doing what I'm very used to. which is just like, is she in that wheelchair? Why is she in that wheelchair? Which is of course common. There's no hate towards this child. It's just our reality. ⁓ And also I don't love it and it's not fun. And it's really not fun to have my son be a part of that. And so I looked at him and when we heard this girl asking and we made this face at each other. that we've never made before, which was just like, ⁓ here we go again. And I, and I, we put our foreheads together and I whispered at him and I said, do you think we should answer or should we just ignore her? And he said, ignore her. And so we just like, we were just like conspirators in this, like, we're just going to pretend like we don't hear her. And there was something about that. think it's not like I am like, excited for these moments to happen. But I do like the opportunity. And I feel like now that he's almost six, like we're able to talk about it together more. Like he has language and I have language to be able to like process it together. And because it is such a reality of life in public for me, it's sort of inevitable that that will happen for him. And I'm kind of excited for us to figure out how we're going to resist that or move through it or like I don't know, find our own little magic route through that together. So today I'm saying let's do the library. I'm sure if you ask me next Wednesday, I'll be like, no, I can't no more. But today that's how I'm feeling. just felt like goosebumps and tears well in my eyes as I heard that story because it just speaks to the connection that you have with your son and how some of these moments that can, yes, on the one hand be challenging. On the other hand, they're creating this real like inside, you know, kind of like an inside joke between you and Otto and this deep connection of you have like, we know what's up kind of like this, we're not going to let other people write our story for us. Yes, exactly. ⁓ I love how you said that. Now you gave me these goosebumps. I mean, Joy, it kind of reminds me of that moment you had with your daughter, which I know is not what you it's not. It didn't go exactly how you wanted. And and maybe you wished you would have modeled something else for her. But also, it's like What a cool conversation to have with a 10 year old. also like, I'm thinking, know that again, like you, it would have been great to have modeled this way that you would have wished you would have handled it. But also I feel like she's getting to process like, wow, there's this way that we can treat each other. And I don't, that doesn't feel like the right way to treat each other. And I can't imagine that that didn't like enter into her deep knowing and the way that she moves through the world with a different kind of consideration because she had not only witnessed that, was able to process it with you afterwards. I don't want to make any assumptions, but I just feel like there would be something meaningful about that exchange that you had with her about it. Not that we want to do that every day. Yeah, no, I agree. I think that there was and that there is. And even like on her, one of her college essays to get into school, she had written about kind of the culture of disability that that she was surrounded by growing up and just ⁓ how things are a little bit different and how, and the same in some ways. yeah, I think for all of our kids, as people with disabilities, that's the exciting thing of like that they get to have this inside view and then that will impact the way that they show up for others in this world. That's the cool part. I feel like at the beginning I was talking about like my son, don't, you he asked the wrong questions too. But I like also am starting to see the exciting parts that you just named of like, also this is, there is a lot of rich meaning and insight that can be absorbed through moving through the world in this kind of family. And I'm excited for that in some ways and hesitant and anxious, but also, you know, like, with this deep knowing that like, think that this can be a really meaningful way to grow up. So ⁓ we're trying, we're one day at a time. That's all of it. Well, thank you so much again. I truly enjoyed this conversation and really looking forward to having a part two. For real, I hope we really do that, because I would really love it. This has been really meaningful to me as well. And I really like what you guys are doing with the podcast and... I would love to do more of it. just let me know. Bye. Bye. Thanks for listening to Double Vision Podcast. The stories and perspectives shared here reflect our own lived experiences with blindness and disability and do not represent all blind or disabled people. This podcast is for conversation and reflection only and is not intended as therapy or replacement for professional mental health care. If you're enjoying the show, please rate and review wherever you listen. You can also leave us a voice message at 949-414- 8336 or email MAIL at doublevisionblog.com with any suggestions for future episodes or comments. Special thanks to our production team, TLS Productions and Benjamin J. Thomas.