Good Life Project - Rebekah Taussig | Sitting Pretty

Episode Date: October 26, 2020

Rebekah Taussig is a Kansas City writer and teacher with her doctorate in Creative Nonfiction and Disability Studies. For the last five years, she’s grown a global community on Instagram, where she crafts these “mini-memoirs” that take you into her world, experiences and identity, a part of which includes her near lifelong relationship with physical disability and the wheelchair that has given her freedom and mobility and much more. Rebekah’s memoir in essays, Sitting Pretty: The View from My Ordinary Resilient Disabled Body (https://amzn.to/3mgFNEw) takes you into her life, creating an eye-opening, funny, and insightful portrait of a body that looks and moves differently than most. In today’s conversation, we dive into all of this. I learned so much not just about Rebekah, her family, life and mindset, but also her passion for writing and creativity and people. You can find Rebekah Taussig at:Website : https://rebekahtaussig.com/-------------Have you discovered your Sparketype yet? Take the Sparketype Assessment™ now. IT’S FREE (https://sparketype.com/) and takes about 7-minutes to complete. At a minimum, it’ll open your eyes in a big way. It also just might change your life.If you enjoyed the show, please share it with a friend. Thank you to our super cool brand partners. If you like the show, please support them - they help make the podcast possible. Hosted on Acast. See acast.com/privacy for more information.

My guest today, Rebecca Kosick, is a Kansas City writer and teacher with a doctorate in creative nonfiction and disability studies. For the last five years or so, she has grown this amazing global community on Instagram, where she crafts these kind of mini memoirs that take you into her world and experiences and identity, a part of which includes her near lifelong relationship with physical disability and the wheelchair that has given her so much freedom and mobility and so much more. Rebecca's memoir in essays, Sitting Pretty, The View from My Ordinary Resilient Disabled Body, takes you into her life, creating this

really beautiful, eye-opening, funny, insightful portrait of a body that looks and moves differently than most. And in today's conversation, we dive into all of this. I learned so much, not just about Rebecca, but her family, her life, the mindset that has sort of fueled her lens, and also her passion for writing and creativity and how that has shown up in different ways throughout her life, especially more recently on Instagram and now in this beautiful new book. So excited to share this conversation with you. I'm Jonathan Fields, and this is Good Life Project. The Apple Watch Series 10 is here. You're going to die. Don't shoot him. We need him. Y'all need a pilot. Flight risk.

The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series 10, available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required. Charge time and actual results will vary.

Yeah, it's funny. I was catching up with your Instagram account and congrats, by the way. Oh, thank you. Good little baby Otto. I was really touched by it. I don't know whether it was your most recent post or like it was a pretty recent post where you're reflecting on this moment where you're like, shouldn't I be the mom who's sort of like bouncing the kid to comfort? And I was just really moved by that whole reflection. I wonder if you might share a little bit of that. Yeah. Yeah. It's interesting because I wrote the book before Otto and I found out that I was pregnant with Otto less than 24 hours after I submitted the manuscript. And so this baby has challenged a lot of the ways that I've seen my body in many directions. And one of them is a new way of accepting the

limitations of my body. It's one thing for me to feel like I can process my limitations as they affect me. But suddenly there's this baby that has very specific needs. So our Otto is a rather fussy child and he, as a lot of babies are, and he gets himself real riled up and really upset. And the only thing that really can calm him down is bouncing and pacing, which I have this very vivid picture in my head of what that looks like for a parent to, you know, pace through the halls and get the baby to calm down. And I just, I can't do it. And I, I try to approximate it. I try to hold them in my arms and kind of do my own kind of bounce, or I'll try to like hold them in my lap and kind of like take them through some swirly motions to try to get that feeling, but it doesn't work. And it's frustrating, especially when it first started happening. It was

devastating because how can I be a parent and not comfort my baby? So I've had to, I've really had to process what it means to be a parent with limits. And the thing that's interesting about it is I wrote about that on the Instagram. And of course, a wave of parents are like, that's it. There's so many ways that we feel those limitations. And my baby wouldn't even let me comfort him by bouncing and pacing. He would only let his dad comfort him. I mean, there's so many ways that we all experience that. I think as a disabled parent, there is sort of this extra layer of feeling like I have something to prove that I am a capable parent. And so there's an extra layer of insecurity and doubt wrapped up in that moment of the baby screaming in my arms and I can't calm him down. But yeah, I think Otto is forcing me to really lean into the things I've been saying for a long time,

which is that we all have limits and strengths and that's okay. Yeah. I mean, it was really, it was so moving to me to just sort of, to hear your reflection, but also it occurred to me as I was sort of thinking about it, for years you've been sharing your thoughts and you're a beautiful writer. And it's like, okay, so let me put words to this issue or this conversation or this experience and then let's put it out into the world and have a conversation about it. I mean, you devoted a huge amount of your educational efforts to really deepening into not just your own experience, but sort of like the universe of information. And now you're sitting here with a

five-month-old baby. And I'm just thinking to myself, all that goes out the window. My goodness. Yes. I feel so bare bones. Where are my tools? Why won't this work? What do you need? Yes. A hundred percent. You're so right. Yeah. It's like, you can't just sit down and say, okay, Otto, let's talk. Listen, but I try. Believe me, I try. I look into this child's eyes and he's squirming around. I'm like, what do you need? Look, I can work with you. We can do this. We can do that. I just need to know what the key is. Yeah, that's amazing. It made me think on so many more levels than I even thought. It was beautiful.

Let's kind of take a jump back in time. We jumped into the deep end of the pool. You have, basically your entire life since you were around three years old, you've had some form of limitation in mobility, originally from, I guess, the result of very young pediatric cancer. But it also sounds like you grew up in a household where there were a lot of kids. And you were kind of encouraged to just like, look, you're like, go do what you need to do. I mean, like, not super coddle.

No, no, not at all. And it's interesting that as people read it, I'm realizing more and more how striking that is to other people. You know, when you grew up in your family, you think that this is just like really normal. And it seems like the more people that read the book, I get a lot of feedback. That's like, wow, talk about that. Um, that interesting family that you grew up in because yeah, I, like you said, I was paralyzed by the age of three and we didn't have any changes made to our house, no accommodations. And my parents kind of just had me continue to crawl around and figure out how I wanted

to move. And I didn't get a wheelchair for a few years after that paralysis. So yeah, we were kind of scrambling all around together. I have five older siblings and I was just very much one of them. Yeah. I mean, your typical family with six kids, by the time the sixth one comes along, no matter what, it's kind of like just fend for yourself, kids. It sounds like there weren't really any accommodations made for you beyond that. Yeah. no, no, no. I mean, I, I, I, my goodness, I cannot imagine being my parents. I can't, I, I mean, besides the six kids also now you have the youngest one now

has cancer and you're flying to New York. They flew me to New York city, um, a couple of times for these big surgeries. And I was in years of chemotherapy treatments. And where is there space to be on top of any of that? So we just kind of rolled with the punches. Yeah. I mean, it sounds like also you reflect a fair amount on how that shaped you, not just physically, but also just how it shaped you on every level, emotionally, psychologically, resilience-wise, in terms of beliefs and expectations, like those seeds were planted so early in your life. And the roots are really deep. Yeah. And it's interesting to think about the gifts and limitations of that. And I feel like I'm learning that more because in some ways, the resilience part of it, the being able to show up

anywhere and just sort of be like, ah, we'll figure this out. And if we don't, we'll be okay. And like, that's an incredible gift. My partner, Micah, grew up in a very different family than mine. And so as we partnered up, I've seen that contrast really profoundly. And he is part of a family of problem solvers. And we figure out how to rearrange things so that there is an ease and there's a different way we can approach things. And I'm just like, nah, let's just kind of wing it. And Micah's like, oh, actually there might be a better way. And I don't have that skill as developed, nearly as developed to think about taking a step back, reevaluating and making a different plan, which is interesting, I think, as a disabled person. I don't know how, I don't know, it seems

like a lot of times disabled people learn to be planners and learn to structure things, not all of them, obviously, as I can testify, but I just kind of wing it pretty much on the regular. Yeah, I mean, it's interesting to share the thought that most disabled people end up really sort of like in planning mode or thinking ahead mode, which from the outside looking in, like from my perspective, like the thought process in my mind, I was like, well, okay, I can understand how that would make sense because, whether it was just the family experience that you're brought up in or whether it's just the way that you're wired, that no matter what, your innate way of being is just, let's just roll with it. It's interesting to think about that because there's so many parts of who I am that I can't decipher the thread. Is this because of my family of six kids? Is this because of my disability? Is this who I am? Did I come prepackaged with this impulse? I wonder that about a lot of

things. And I wish I could look at the like behind the scenes, lift the curtain and look at the wiring and know. I think especially with disability, there is this interesting game to play to think, impossible to know, but to wonder, who would I have been for good or bad? I don't know. Yeah. I mean, it's such an interesting question, right? Because for you, this touched down in your life at such an early age that there isn't really a lot of memory or formation or before that. Whereas if you look at somebody else who may have experienced through illness or injury or accident or trauma, a loss of function, a loss of mobility, you know, in their teens or twenties or thirties or forties, and they have this sort of window of

like life before and life after, like that just doesn't exist for you. No, I don't have that at all. I don't have that at all. I have the tiniest little flashes of sensory memories from before, but I don't remember moving my body differently. So I have, yeah, there isn't a before for me really. And I have a lot of siblings to sort of compare myself to. they are all walking and there's ways that we are very similar in ways that were very different. And so that's kind of a one way to sort of tease out a little bit of that, but who knows? I don't know. Yeah. I mean, it's interesting. So your parents are basically like, okay, so this is the ethos we're going to set. And the,

you know, like the expectations are are the same as for everyone else. Have you talked to your five siblings over the years? Because they're each their own individual person with their own sensibilities and internal feelings about their experience of you when you were all young kids. So yes, a little bit, to varying degrees, my oldest sister is 12 years older than me. So she was a 15, 14, 15 year old when this was all happening. So her perspective is really different from obviously mine and some of my younger siblings who weren't as aware and didn't feel as responsible. I think she felt more of a burden than most people in my family, like maybe even more than my parents in some ways that she felt a responsibility to care for me, older than me. So she was in a very similar way. I don't know that she remembers me before this either.

She doesn't remember me before paralysis either. But I don't envy her position of being a little girl growing up next to her sister, who's the cancer patient, because I think I did receive and consume a lot of attention from not necessarily from my family specifically, but just from the world around us. We go somewhere and I'm bald and sick and cute. And I think a lot of people knew our story and she was kind of in the shadow of that in a lot of ways. So she, I think, has developed as a person from growing up in that position too. She is a caretaker and she's relentlessly positive and interested in making all the people around her very happy. And I have to think that a lot of that had to do with her

growing up where she did in our family at the time that she did. And then I have three brothers in the middle between those two siblings. And I don't know as much about what they think of all of that. It would be interesting to hear them reflect on that for sure. Because I think it shaped our whole family. I mean, it's kind of both ways. Our family was already that way and it shaped the way that we responded to it. But I think it also kind of reinforced some of those habits and probably made us buckle down in some of our coping mechanisms. Yeah. I mean, you also, you write about your dad in your book and it's fascinating because, you know, sort of like on the one hand, especially when you're young, you see him as this like

stoic guy who wakes up at 4.30 every morning, goes for a prayer walk. If it's freezing sleep, whatever it is, goes to work, misses one day of 40 years of work or something like that. He is there like clockwork. It's like 17 p.m. every day. Who is this person? So you make all these assumptions based on just the way that you see him being when you're a kid. And then later in life, you learn that he was kind of living a very different internal reality. Yeah.

I think he carried a lot more anxiety than I realized that he did. And I think we all go through that with our parents of seeing them as just heroic and not having weaknesses or holes in their armor. And he especially, I mean, he is a larger than life, unreal person. Who lives that way? I don't know very many people, if anyone, who lives like Tim Tosig. But I do think that he, I mean, imagine being responsible for such a big family with a sick youngest child. My mom also has a lot of health complications. And so I think there was a tremendous amount of pressure on him to keep us all safe and

afloat. And so I imagine that for him, having the 4.30, I'm up, I'm on my walk, the weather be damned. I think that that had to be a way of holding on to some amount of control and feeling like there was something solid. And it is interesting as he's gotten older and he's retired and he doesn't have all of those very rigid parameters, although he still does get up at 4.30 every morning. That is something that he has held on to.

It's interesting just to see him change as a person. I saw him as so fixed in a lot of ways, like this is Tim Tosig, my dad, and he will always look and be like this and his life will always look like this and he will always have this energy when he comes in the room and he's really changed and softened and relaxed as he's gotten older and settled into his retirement. But yes, he's pretty fun to write about because he just, I mean, he just like writes himself. Any detail you pick up about Tim Taussig is just like, really? Wow. What a person. Yeah. I mean, and it occurs also, you know, like as you, as you write about him and then as you share more about him now that there is, you know, whenever I see that the level of sort of like routinization and ritualization that you describe in somebody's life. And when that is sort of like that is sustained for not just months, but years and decades, you know, part of it is I wonder, well, like, is there some sort of underlying OCD or something

else going on there? But then the other side is what I have seen so much is ritualization as coping mechanism. And that when you wake up and you know that every day, these 30 different things are going to happen in the same way at the same time, and I can control these things. It gives you these 30 touch points, just really touchstone, knowing that there's this other part of your life where you have no control. It gives you enough consistency and certainty so that you can breathe and make it through each day. It sounds like at least that was part of what was going on for him. Oh, I think so. I do think so. And I wonder if he would ever talk about it that way.

He's a very matter-of-fact person and has sort of a very settled answer for things before your question is really out of your mouth a lot of times. But I think so. I think it would make sense. I mean, he had plenty of reasons to be coping, I think. So I think it makes make sense. I mean, like he had plenty of reasons to be coping, I think. So I think it makes a lot of sense. And of all the coping mechanisms that people have, I think it was one that kind of like benefited us in the sturdy, safe structure that he kind of built around us through that. I don't think coping mechanisms always go that way. So. Yeah. So let

me ask you about the flip side of that though, because I see it as a really powerful coping mechanism. And at the same time, I also wonder whether that sets this inadvertent expectation that this is the way to be and that no matter what comes your way, you have these certain things to do. I remember this beautiful conversation earlier this year, I think it was, with a guest whose mom told this mythological story about the early days of raising kids. And then when she had her own child that really struggled and was suffering and went into a dark place, the mythology of her mom set an expectation that actually made her experience worse. And so I wonder whether there's sort of like this flip side where it's like when there's this, not even an articulated, but just by your behavior, you're modeling this sort of like perfect mode of being, whether that creates an expectation that makes it almost like, you know, really tough to live up to when you sort of like become an adult. Oh yeah. And I think especially as I was, as I was growing up and

trying to imagine what adulthood would be for me, he towered above me as this impossible model of what an adult working adult looked like. And I, I, because he was such a powerful person in my world, I didn't really know that there could be another way. Like, it just seemed like this is how a person grows up and becomes an adult and what work looks like. And I did believe that I needed to have that kind of rigid schedule and set up and kind of no weaknesses. I mean, you don't ever take a sick day for any reason. You don't even take an extra long lunch. He would bring his bran muffin and carrots to work. I mean, you can picture it, I think. And so I think that picture was so incapacitating and overwhelming for me as I got older and

tried to picture myself doing something like that. Now that I am an adult and a working adult, it's interesting because on the one hand, I think I know and believe strongly that work and adulthood can be a lot more flexible and fluid and that weaknesses are not failure. And actually, they can be kind of the interesting part of things. And at the same time, he's still a very powerful voice in my head. And I still kind of look at things through, I have the Tim Tosig lens with me all the time. And I can, I guess at the very least, I recognize that it's a lens and I can say, okay, that's one way to look at it. And maybe there's another way to look at it, but it's still with me. Like I, it's not like I am just have risen

above that space and somehow I, I, I, it doesn't shape how I see myself or the world around me. It still does. But I know that there are other ways of looking at it, I guess, too. Yeah. I mean, I guess at a certain point, you have to kind of just accept who you are, your own lens, your own personal experience, and validate that as being as true and as valuable. But man, I mean, it's hard for anybody to do, you know, as kids, as teens. And I guess maybe that's a curiosity of mine, you know, because I think when I think about what I just said, and I use the word anybody, in my mind, I'm probably translating that to able-bodied

person, right? And then I'm wondering, okay, so am I actually just making the assumption? Well, that's like the struggle that truly anybody grapples with. Is it different in some way, shape, or form if you're disabled versus able-bodied? The thing that we'd be grappling with would be notions of work or notions of being different from our parents? Or what is the thing that you're thinking? I think it's about expectations, about sort of like what is an appropriate way to be. And also when our own personal experience starts to inform the way that we want to step into the world, that we want to be in the world, and that sometimes conflicts with the expectations set by our parents. To me, that just feels like this universal experience that we all move through.

Yeah. I think it's interesting. I think a lot of people with disabilities often find, I mean, obviously everyone's experiences are different, but I have heard a lot of people talk about people around them having very low expectations for them. And that's an interesting piece of it too, of thinking if you grow up having people expecting very little of you, of what you'll do or what you might become, how do you get out of that shadow as well? Or do you have to have somebody else counter that for you? I have a disabled friend who is a writer, Erin Clark, and I'm reading her memoir right now, which is really a gorgeous book, If You Love Me, Throw Me off the mountain. And it's interesting to see the ways that our

experiences are the same and really different because I was kind of in this cocoon of support and coziness. And Erin was kind of like thrown out like into the woods, so to speak, not literally, but she was like kind of fending for herself really early on. And in some ways I feel like she developed this really hearty sense of self-determination and confidence from that lack of support and kind of like no expectation either way. And I feel like I somehow swaddled in this busy home that felt very predictable and safe with Tim Tosic at the helm, grew up with a lot of doubt and insecurity and worry about what I was capable of. So it's interesting. I don't know. It's interesting to think about how disability plays into what you become and what forces are shaping that in one direction or another. I mean, it's almost like you could have the same

family and a very different will of a child in response to that. It could go either way. Because I would think in my head, I would imagine that the child that is kind of swaddled in this very loving, supportive family would grow up to be, have a hearty sense of confidence and, you know, be ready to tackle the world and did not work out that way for me. And I would think that Erin would, you know, need extra boosts from other people, but she's like completely self-possessed. So I don't know. Yeah. But I mean, I'd say it's a really interesting, bigger point too, which is when you started to speak, one of the things that you said right away was, you know, like, of course, I can only speak from my experience, not for all disabled people. And I think also like this, it's this part of the conversation, right? Is that, you know, okay, so there's you and there's Aaron growing up in two different households and having two totally different experiences. But if you had swapped households, you know,

like would you still be the exact same person? And it also zooms and looms out to this idea of, you know, like when, and you write about this actually in a really beautiful way, this phenomenon of like, Hey, Rebecca, tell us a disabled point of view. You know, it's sort of like you're, you're, well, you're in a wheelchair. So, you know, like speak on behalf of all people who are in a wheelchair, which is kind of this crazy thing when you zoom the lens out and think about it. It is. It is, and it isn't. I mean, it's so many things at the same time. I think

that there are ways that every single person who is disabled, it has as unique of and idiosyncratic experience as any other human being alive. And so in that way, you know, we were even talking earlier about how some people are injured later in life and how different that experience is and their family that they're in and what time they grow up and their unique DNA. I mean, there's so many ways that those experiences are different. And then at the same time, there is this really amazing thing of being in a space with disabled people where there is something where you're like, oh, you understand things that I'm not used to the people around me

understanding. So I think both of those things are true at the same time. I would never and could never speak for all disabled people. There's no way it's a ridiculous and absurd thought, but there is something really almost magical. This summer I did a Zoom writing workshop with just disabled people. And I'd never been in a writing workshop with just a group like that. And we all kind of halfway through kind of looked up and we're just like, what is happening? This is the best feeling. But I think that that's the same. I mean, that's just like the human experience. There's a way in which we are all human and we're all endlessly different in that.

And then there's ways that because we're all human, we connect. Like it's also so singular. And then there's like these rings of almost like connections between groups that become smaller and bigger, depending on what characteristic or trait we're thinking. I'm not sure if that makes sense, but I think it's both at the same time, the same and different at the same time. Yeah. I mean, to me, that actually does make a lot of sense. You know, when you think about just the concept of belonging, you know, and, and how people connect, where do they connect around? Very often it's around shared life experiences, shared lens, shared values, shared beliefs, shared attributes, shared family, shared religion. You know, there's sort of like these things that, so it makes, it makes a lot of sense

that disability might want to be one of these, almost like it's a shared experience that is different in some way than like other parts of the world. And then even within that, there are going to be all sorts of different subsets, the same way there would be in any other type of thing where it's like, okay, so you've had, you, so you've been living with Friedrich's ataxia and it's sort of like where the shared commonality, the shared experience goes even deeper and more granular and would potentially foster the, like create the opportunity for the fabric to be woven even more tightly. Yeah. Yeah.

That actually does make a lot of sense. Yeah. I like the way that you said that. That makes a lot of sense when you say it too. I have a cousin that I grew up with who has a visual impairment and we have known each other our whole lives as cousins, as family, and never really talked about our disabilities together at all. And it wasn't until I started my Instagram account and Alex started reading my posts that she was like, that resonates so much with me. I mean, visual impairment wheelchair, so different, but we pretty quickly after she started reading those posts, we just got on the phone and talked for hours about all

of these things that we never really knew we could talk about or, or connect over. Um, and of course there's ways that our experiences are so different in really interesting ways, the ways that these patterns of disability show up for us in ways that are both recognizable and singular. But yes, that weaving together of those points of connection from different directions and in different kind of layers of identity is a beautiful part of being a human. And disability fits into that in a really beautiful way. I guess what I'm saying is I don't know that I knew disability was a part of that until a lot later. And I think Alex didn't know that until a lot later. We were living side by side with those layers clinging to us, but didn't really know that

that was a point that we could connect through. And once we did, it was so powerful. Yeah. I mean, I wonder also if part of the experience of that is both shared experiences, but also one of those shared experiences is also to a certain extent being other, but in different ways by a sort of ableist culture. And that that is something that alone, like, you know, like regardless of why, you know, like you have that experience, like having that experience, you know, like feeling sort of like feeling or being told that or just sensing that, well, you know, like people are perceiving you as being other than and treating you

differently becomes this source of sort of like shared like communion to a certain extent. Yes. And I think that actually, I think that's exactly right because I think that's part of why neither of us knew to talk about it or knew that this was, we didn't even have the language when we were younger to talk about that or identify that point of connection because we didn't even know what ableism was. Ableism is like this incredibly powerful force that has been largely invisible, I mean, unnamed and unknown for a lot of people for a lot of time. And so it's interesting that

both of us would be kind of developing underneath that powerful cloak with no ability to point to it. So I think you're exactly right, that experience of being othered. And then there's a way in which that connects you to other people that are othered for different reasons, but of course, only so far, because there are ways that we receive that othering differently. So again, we're talking about the same thing, just that back and forth lens between we are the same and we are different. Yeah. Whether you're in your running era, Pilates era or yoga era, dive into Peloton workouts

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We've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is? You're going to die.

Don't shoot him, we need him. Y'all need a pilot. Flight Risk. So we both use this term ableism, but I don't really describe. What are we talking about when we talk about ableism? Well, I think the traditional definition is discrimination based on disability. In the book, I do spend several pages trying to unpack that because I think it's a lot more complicated than that and a lot more interesting than that. So I think that the definition that I develop after several pages of musings in the book is that ableism structures the world around a idealized, largely imagined body. It's the endlessly youthful body, the body that doesn't feel any pain, the body that doesn't have any needs really, and the beautiful thin fit body.

And then the bodies that deviate from that idealized form, the further the deviation, the greater the punishment for those bodies. So a body that is paralyzed and doesn't walk would receive the brunt of an ableist structure that hasn't considered that body that kind of, and I mean that in a physical tangible form, but also socially. So the structure of our buildings and the ways that our buildings are designed, but also in the stigma of what it means to love that disabled person or that person that deviates from that norm or how we structure our work, what our work schedules look like. So yeah, ableism would be the systems in place that are created with this bent towards this idealized body. And then all of the bodies outside of that are going to be punished to some varying

degree, depending on how much they deviate from that, which, you know, punishes almost all of us. I mean, eventually it does punish all of us because we all age and we all wear down and get old and our bodies take on pain and complications. And that's part of living in a human body. So ableism, you know, when that word comes up, I think a lot of times we think about things like, I don't know, the person who doesn't have an accessible placard on their car and parks in an accessible spot. You know, that's a common example, but I think it's a much broader, more sweeping, complex force that shows up in every corner of the universe. From my perspective, I see it everywhere from the things that show up on our TV shows and the stories that we tell on

our screens to the way that we have expectations for our children, you know, like to go back to our earlier conversation about the expectations that parents have for disabled kids a lot of times. So I think it's kind of built into the air we breathe in a lot of ways. Yeah, that makes so much sense. It's interesting as you were sharing that part of what was happening in my brain was I'm thinking to myself, well, like, I wonder if it's a type of thing where if you aren't touched by it, you don't even realize that any of this exists. And then my brain said, no, wait, actually, there's probably no person who's not actually touched by this. So it's not a matter of if you're not touched by this, it's a matter of if you have no awareness of the fact that you are touched by this, no matter who you are every moment of every day, you just may be completely

unaware of how. Yes, I think so. And I think that's exactly right. I think we all are touched by it eventually, even if it's just in the early days of loving someone who's touched by it. But I think that one of the things about ableism that I've noticed and felt and seen is that we believe that this is just how the world works. Like this is just how it is. It's not created. It's not something that we're building or making. We're deciding together. It's just how things are. And therefore, if I'm punished by that, well, it makes sense. Like that's natural. So I'm thinking of like, like housing is an interesting example of that. In Kansas City, where I live, most houses are very inaccessible. And as people get older, and their bodies age, and they don't necessarily

want to walk up three flights of stairs in their house to do the laundry and then to go to bed or whatever the arrangement is in that house, people are scrambling for ranches. There's this mad dash. If a branch goes on the market, people, it's gone in an instant because so many people have a need for that kind of house. And so it's just interesting to think about design in that way. We have built our world in a way that really doesn't anticipate or prepare for that stage in life, but there is a way that we could have more flexible design or more options in our design. And that's like one very tiny, tiny example of it. But I think that like part of the process is identifying ableism as something that we have

created that doesn't have to be in place. We don't have to run things the way that we do. We don't have to think about bodies the way that we do. I think that's part of what's important about having some of this language and the lens is to be able to start imagining something different. Yeah. And also to acknowledge that this thing actually exists. Yes. When I first started hearing the word ableism, which was not until I was in my late 20s, I did a Google search for it because I was like, let's learn about ableism, which was not until I was in my late twenties, I did a Google search for it because I was like, let's learn about ableism. And you know how, um, you know, Google provides the prompts of the different common searches. And like so many of the searches

were like ableism exists or like, is ableism real? Or like all of these like really basic, basic, um, like, wait, what is this a thing? Um, and yes, yes, it absolutely is. And once you start, once you start noticing it, you will notice it everywhere. Um, it exists. Yeah. That's fine. I have, um, I have a friend actually who was, um, an architect for a long time and her whole mission was to try and create plans for houses that age with you so that, you know, like because of the average person, like you said, at some point, we're all going to be touched by some level of limitations, mobility, illness. And a lot of the way that we live, including the homes we live in from the beginning as something where it would adapt to our needs, no matter who we are, no matter how old we are, so we can actually just stay and be in community

for the entirety of our lives. Yes, yes, yes, yes, yes. Being community. I think that's so much of it is the idea of like all being together in one space. I mean, that's the same thing with disability is like, well, let's create like one special bus where we'll put all the kids and disabilities on that one, you know, like that separation and that the way that we'll solve this problem is to create this space way over here where those people can go and be away from us. And we can kind of forget that they exist and continue to create these spaces that don't accommodate them and eventually won't accommodate us. And we'll just perpetuate that cycle as opposed to staying close and being near and staying in community. And, you know, I think I love that idea that your friend has about like designing homes to accommodate that. Because I also think if we did that, it wouldn't just accommodate us as we get older. It would accommodate like us in surprising ways

and ways that we don't even realize like, oh, this actually is an easier way for me to like chop vegetables in my kitchen. Or now my child can interact in this space too, or I actually am temporarily injured and now I can, you know, interact in this space in a way that still works for me. I think that is, that is just like endlessly exciting for me to think about. All of the, all of the points of access that pop up when we think about design from the perspective of flexibility and accommodating more experiences. I think that's endlessly exciting to me. Yeah. I imagine, and I know you write about this also, the notion that of trying to think ahead,

and we talked about this a little bit earlier also, I guess you don't spend a lot of time thinking about sort of like what may or may not happen, but the idea of, you know, will, will a space that I'm going to be okay for me, you know, like imagine if there were an entire community or you just like, if we reached a point where you just kind of knew that, well, yes, it will be. And it's like, it's not a thought, you know, you know, if, if you don't struggle with a physical disability, you're like, it's not that it's not just, it's just not a part of your experience. Not that you don't even think about it. It's just not a part of what you consider before you say yes or no to developing a new relationship to going to an amazing experience. But how incredible would it be

if there was a way to slowly start to even remove the consideration of that from the experience of what do I say yes or no to? Who do I say yes or no to? It's hard to even imagine. It's hard to even imagine what that would feel like. It feels like a dream world in some ways, the ease of that. I think I forget sometimes how much anxiety I build up in a lot of those unknowns and unpredictable things. And wanting to be the person that kind of goes with the flow and trying to attempt that, but sort of stealing myself for the inevitable inaccessibility that will pop up at any given moment that accumulates and wears on a person over time. But I think we can do things differently. I think we can move in a different direction. Yeah. That accumulation and the wear,

you know, I think that's a really, it's probably, let's talk about that a little bit also, because, you know, there's this phenomenon of, okay, so in various different ways, you know, like I am experiencing being ostracized, feeling othered in different ways. And I've got to build up like the emotional reservoirs to find a way to sort of like navigate that. And then at the same time, there's this cultural expectation that, well, you know, also you should also make those same people who may unwittingly be the source of this othering feel comfortable around you. So it's sort of like, hey, let's compound this problem. Yeah. You we can. Yeah. I didn't really even reflect on that dynamic too much until I started online dating. And I wrote about that in the dating chapter, but how weird and impossible that... What an enormous ask for a person to have to juggle so much at one time. It is, it is exhausting to have, yeah, to have to be the person that is like on a, on a first date with someone you're like having to think about the accessibility of the space and you're having

to worry about like how you're going to like move down the street while you're walking with this person, while you're having a casual conversation with them and you're trying to assert your humanness and that you're like an interesting person. And also don't worry about me. You don't have to take on the burden of my disability, but also could you kind of help me here? And like, it's just like such a, it's so messy. I mean, dating in general is messy. And then when you add that layer into it, it's like, good grief. How does anyone do it? I don't know. Yeah. I mean, it's sort of like layers on top of layers, which brings up this interesting question and topic, which is in those interactions, whether you're dating, whether you pass somebody on the street or whatever it may be, part of the impulse, I think, for a lot of people

when they interact with somebody who they see with, whether it's a physical disability, emotional, cognitive disability, is to become hyper kind, which is if the relation status for kindness in this context on Facebook would be, it's complicated. Yeah. Yeah. No kidding. Yeah. The complications of kindness. It's such a fraught topic. And it's of all the things that I write about and talk to people about, I think this is one that continues to be the most, people get the most defensive and uncomfortable. And my parents still have a really difficult time understanding anything that I'm saying about when I talk about this because it is, it's such a harmless quote unquote harmless thing. And it's, there's a way that's like, are you really complaining about people just like trying

to be nice to you? Like good grief. Do you have nothing else to complain about? Who, who do you think you are? But it's, found since the book has been out and the excerpt of the book that talks about kindness was in Time Magazine as well. And so a lot of people read that and I got a lot of email responses about it. And I started to sort of sense kind of this line of a pretty clear line of division between the people who knew that feeling, who knew what it was like to go out in public and always be ready for the barrage of kindness to rain heavily on them, and the people who didn't know that feeling and who had not felt that way before. And honestly, it was really validating for me because to hear, to get so many messages from people saying like, that is exactly how I feel every day.

And no one has ever said that before or use that language or described it that way. It was incredibly validating to me because in some ways I have felt a little cautious about talking about it as much as I have because of that dynamic of like, what are you really complaining about? But I think my experiences with it are kind of that dynamic of like, what are you really complaining about? But I think my experiences with it are kind of the tip of the iceberg. I think that it represents a much deeper impulse and pattern in the relationships that we have or our understanding of disabled people. So it represents sort of a deep rooted belief in the inherent helplessness of disabled people. Even if no one would want to say that or be thinking that overtly, I think that there is sort of this gut feeling like probably this person needs help, or I probably should help

this person. It's almost like a guttural response, like the symbol of the disabled person appears, and there's this gut response to do something to intervene. I think it also taps into some of these complicated histories that we have with charities and the fraught dynamic of putting disabled people up on the stage or on a screen as sort of the thing to make you feel bad so that you'll get your wallet out and give money. So it kind of feeds into that dynamic. I mean, it does represent a pretty complicated social dynamic that we have when it comes to disabled people and how we kind of, how we think of integrating them into our society and what role they play in our society, I guess. And it's, you know, it is, it's really nuanced, you know,

because on the one hand you're like, oh wait, so should we just treat all disabled people like unkindly? Well, no, of course not. Right, right, right. That's not the point. But the point is like, you know, the notion that going to the extreme opposite side also is not entirely good. You know, like entirely good. There's harm caused by that as

well. I think it's really foreign to a lot of people until you really start to think about it. It is. You're so right because that is another response that I've gotten from a lot of people is like, what do I do? And what are you proposing I do? And I'm the kind of person who's kind to everyone I see. So what do you want me to do? And you want me to fundamentally change who I am and become a cruel person? How does this work? But I think the bottom line is, I think it comes down to, I want to be seen for who I am and not as an object or a symbol or a shorthand for something. And I think when we go out in public, there are specific manifestations of people that signal things to us.

Like a pregnant woman is one of them as well. We see that and we think that we know a lot of things about that immediately, about that experience or what that person needs or what that person's story is. And we don't, we don't know actually. And I, I guess I, when I talk about kindness, the only thing I'm really asking for is just to be seen for someone to stop and see me before they do the next thing. To me, I think it really is that simple. But I know that it feels really complicated because it's hard to know what to do. Or we want like a set of rules so that we can go into public and have our rules and

know how to behave. And I don't have a set of rules. Because there are times when I'm in public and I would really like someone to help me out with something that happens all the time as it does for you, I think too, and most of us. So it is complicated. Kindness is complicated. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping.

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So you just said, I really want people to see me just for who I am first, which zooming the lens out, you know, is another curiosity in my, so we've been talking a lot about disability in the context of you spending five years writing and sharing on Instagram and then writing a book. Part of your education is education was disability studies, but it was also writing. So it's not like, hey, here's Rebecca and she's my disabled friend. That's a part of your identity, it's part of you, but it's not the entirety of it. You're a human being, you're a woman, you're a mom, you're a partner, you're a writer, you're a creative

individual. So I was really curious because there's clearly a really powerful creative impulse inside of you and you're a beautiful writer. And I know that you've got to have a lot more writing, a lot more books inside of you. At least I'm making that assumption, but I kind of feel like that's there. And so my curiosity is that the opening move for you, for Rebecca, the writer was to focus your, your, your, your talents and your craft on this one part of you, were you at all concerned in making that decision that by making the sort of like the out of the gate book about this one part of you, that you would then sort of be pigeonholed as the person who is this and writes about this rather than, well, she's just a beautiful writer.

Yeah. A hundred percent. What a lovely question. Thank you for asking that question. I still worry about that. It is interesting. And I love that you asked me that because I feel like so many of the conversations that I've had about the book since it's been out have been much more disability specific and ableism like we talked about today, which makes sense because it's what the book is about. Yeah, but in terms of thinking about me as a writer and having other things to say or other books to write, I am a little worried about that. And I do value my writing as it relates to any part of me, any story that I want to write. I am a little worried about that. And I do value my writing as it relates to any

part of me, any story that I want to tell. And I think there is a way in which people will look to me to say things about disability more than anything else. And I wonder if that is kind of where things are headed for me. I don't know. I don't know what it will, I don't know how it will continue to unfold and what other books come out. But I want my writing to be valued for good writing, which is why I love the way that you talked about it and what you said about it. That I care so much about the flow and rhythm

and texture of every sentence in that book because I love language. And I worked to cultivate a voice in that book. And all of that is its own thing, separate from disability. And then, of course, everything that I write is seen through this lens of the body that I live in. That's how I look at everything. Even if it's not explicitly named, that's going to be a part of everything. And both of those things are true at the same time. So we'll see how that unfolds. I don't know how that will continue, but I hope that at the very least, I just, I want to be able to keep writing and do more of it,

regardless of, I guess, I don't know what those projects will look like. But the book, I mean, in some ways, this was the book that was going to be written because it was an extension of what I started online, which was about unpacking all of the things I was kind of learning and reprocessing about living in this disabled body that I live in. And that was very much what I was thinking about all of the time and processing all of the time. It was kind of new for me. It was pressing. It was the thing that was on my brain. So now I'm wondering, I'm sorry, I'm like thinking this through in real time as I hadn't really thought about it. No one has asked me that. But now like as a mom, so much of what I'm thinking about is like this, this new experience and

processing what it means and trying to figure it out. And what would it be like for me to write a book about motherhood and where would disability, obviously disability would be somewhere in there, but would it be marketed as a disabled, like a book about motherhood and disability, or could it just be a book about motherhood and also disability as a part of that? I don't know. So I feel like so much of it comes down to marketing, like how it's pitched, what's on the jacket and what's the picture on the front. And I don't know how that will play out, but I have other things that I care about and want to write about and process.

And I know that I will continue to as I'm experiencing right now. So I hope that people let me do that, I guess. And that I don't, I'm only allowed to write books with wheelchairs on the cover. I hope that's not the case. Yeah. I mean, it's like you said, no matter whether it's sort of like an overt focus of your writing or completely not, the fact that you know you are who you are you've lived your life in the body that you have your your mind and your experiences your emotions and your craft have been shaped by your physical lived experience it's always going to come out in some way shape or form even when you have no idea that you know you're referencing

something it's like it will always be there, even if it's not like, well, let me now write a follow-up book about, like how to raise a child when you're disabled. Also, so I just said, when you're disabled, I'm curious also, there's a language pattern that I have been sort of correcting myself with, which is, so when I say when you're disabled

versus living with a disability, I've been corrected over the years in all sorts of different contexts with people saying, well, no, like, you know, like when, when I say like you're disabled versus you're someone who's living with a disability, it, it moves it from an identity based thing to, no, that's not my identity. It just happens to be something I'm living with. Just like, you know, like you're living with this and with that. I'm curious sort of like what your, what your exploration around that is. For me, I, well, first of all, I feel comfortable with you using that language for me either way. I, I really appreciate people being careful and

mindful about language with disability because it matters. It makes a difference. It feels different. Right. But I would say personally, I personally, I'm pretty flexible and open about that. I don't feel offended either way. But when I describe myself and what resonates with me, I say disabled person. I think it is part of that kind of letting that be a part of my identity and not trying to distance myself or keep myself separate from it. It feels like close to me. So that language makes sense to me, but I understand why people would, would prefer person with a disability or living with a disability, or it's such a personal thing. And the way that it feels to you is so personal and to have an identity thrust on you, that doesn't feel like an identity or to have it

separated from you when you feel like it's close, you know, it feels different to a person. And, and it seems like there are lots of different, I mean, there is not one standard set. Like this is how you should always refer to disabled people or people with disabilities. You know, there isn't one, which makes people squirm because they want it. So I really appreciate your mindfulness around that. And for me, I do feel comfortable either way. Cool. I mean, that makes so much sense to me. And it comes back to really the beginning of a conversation. It's like, treat each person as one person. I think it really comes down to that. A hundred percent. I agree.

Yeah. This feels like a good place for us to come full circle as well. So hanging out here in this container is a good life project. If I offer up the phrase to live a good life, what comes up? Oh man, I should have been prepared for this, shouldn't I? What comes up to live a good life? I think for me, acceptance of who I am and not being at war with that, not trying to have a wrestling match with who I am and trying to be something different or striving to be something better than who I am or above who I am or separate from who I am. I think learning who I am and understanding that person and accepting that person as she is for who she is has been a huge, huge shift for me in my life. So for me with disability specifically, I guess, growing up as a disabled person and growing up in sort of a way that was dissociating that part of

myself from me and erasing it and cutting it out of pictures and trying to be the non-disabled Rebecca was an exhausting, painful, kind of like unproductive or like stifled way to live. So for me, I think once that was aligned and once I was able to look at myself as I was and value that person, that was the good. That was good. Thank you. Thank you so much for listening. And thanks also to our fantastic sponsors who help make this show possible. You can check them out in the links we have included in today's show notes. And while you're at it, if you've ever asked yourself, what should I do with my life? We have created a really cool online assessment that will help you discover the source code for the work that you're here to do.

You can find it at sparkotype.com. That's S-P-A-R-K-E-T-Y-P-E.com. Or just click the link in the show notes. And of course, if you haven't already done so, be sure to click on the subscribe button in your listening app so you never miss an episode. And then share, share the love. If there's something that you've heard in this episode that you would love to turn into a conversation, share it with people and have that conversation. Because when ideas become conversations that lead to action, that's when real change takes hold. See you next time. Apple Watch, getting you 8 hours of charge in just

15 minutes. The Apple Watch Series X. Available for the first time in glossy jet-black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were gonna be fun on january

24th tell me how to fly this thing mark walberg you know what the difference between me and you you're gonna die don't shoot if we need them y'all need a pilot flight risk