379 – Rebekah Taussig of Shawnee, KS – Mother, Author, Podcast Host & Disability Advocate

Transcript:

Tom Couch: Special thanks to Amgen for sponsoring the Special Fathers Network Dad to Dad Podcast. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing and delivering innovative human therapeutics. Discover more about Amgen’s mission at amgen.com.

Rebekah Taussig: One of the most distinct memories I have is the sound of my dad’s voice reading to me in the quiet moments in that MRI machine. And anyone who’s been in an MRI knows that a lot of the time that you’re in that machine is like banging loud noises. You can’t even hear yourself think. And then in those moments of stillness in between, I would hear my dad’s voice reappear. Then for those moments when his voice would return, it was like the sun would reappear or something. You know, it was like very grounding.

Tom Couch: That’s our guest this week, Rebekah Taussig, mother, wife, author and podcast host. Rebekah’s website says she writes to understand, to reclaim, and to participate in changing cultural narratives we have around disability. It’s a fascinating conversation that we’ll hear on this Special Fathers Network Dad to Dad Podcast. Now say hello to the founder of the Special Fathers Network and the host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. One brief message. The Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing, heartfelt challenges. One of the highlights of the year is attending the in-person weekend retreat scheduled this year from September 5th through the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind groups and join a group of like-minded dads to become the best version of yourself. It might just transform your life as it has done for so many others. For more information, please see the show notes or simply go to 21stCenturyDads.org.

Tom Couch: Now let’s listen in to this conversation between Rebekah Taussig and and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Rebekah Taussig of Shawnee, Kansas. Mother, wife, author, fellow podcast host and outspoken advocate for those with disability. Rebekah, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Rebekah Taussig: Well, I’m thrilled to be here. This is going to be fun.

David Hirsch: You and your husband Micah have been married for seven years and are the proud parents of Otto, who is a typical five year old. So let’s start with some background. Where did you grow up? Tell me something about your family.

Rebekah Taussig: So I was born in Manhattan, Kansas, small college town. I’m the youngest of six kids, kind of a scrappy family, played really hard, close with my siblings. We grew up in the 80s and 90s and so my memories were kind of a different time where we would just sort of remember, run around the neighborhood, maybe be at a friend’s house. And then right around six o’ clock, my dad shouts into the neighborhood like supper time. And we all come running from wherever we are, scrambling from wherever we are. We lived in a really old house and I slept on the top floor in the top bunk of that house. We had a lot of rabbits and dogs and hamsters and just sort of a busy family with a lot of kids, a lot of people coming in and out and I was the littlest in that crew.

David Hirsch: So you were the caboose. That’s what I heard you saying.

Rebekah Taussig: That’s right.

David Hirsch: No doubt you were trying to keep up with your older siblings.

David Hirsch: So is your dad still alive?

Rebekah Taussig: He is, yeah. He’s going to be 75 this year and he is like hardy as a horse. He’s one of the healthiest, steadiest, takes care of himself. People I know.

David Hirsch: That’s fabulous. And what does he do or what did he do as a career?

Rebekah Taussig: He was a banker. I think it was like his first job out of college was a bank teller. And he stayed at that bank, kind of moving up in the ranks until he retired. It was 40 some years, I think it was 43 years that he worked at that bank and retired maybe like five years ago. So he was steady Eddie, really consistent and dedicated to that career. And then, you know, his, his whole world has kind of blossomed since retirement too. A whole other universe has been made available to him. But numbers guy, I can relate to.

David Hirsch: That as a fellow numbers guy. And my recollection was that he was very consistent with his work ethic. How would you describe that?

Rebekah Taussig: Terribly consistent, Yes. I mean just his whole lifestyle and work was very much a part of that. But his entire life he’s in such command of his minutes and

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Rebekah Taussig: his body. And so it would start every morning. My dad, as long as I’ve been alive, I think this started when he was maybe like a father of two. He would get up at 4:30 in the morning, every morning and he would go on a prayer walk, rain or shine, or tornado warnings Whatever it is, like he’s never missed a day, you know, sub degree weather, doesn’t matter, stayed out, you know, like we were up too late with the babies last night, doesn’t matter. Always 4:30 in the morning. And then he would come back and get ready for work. And for most of my childhood he would take the bus to work. He worked like in downtown Kansas City. So he would walk to the bus stop and leave our house at 6:30 in the morning. So I was usually not awake when he left for work. I would like sort of hear him getting ready and leaving for the day and then he would take the bus back home. So he would be home, I mean like to the minute we could expect him between like 6:32 and 6:37 every night. I mean so consistent and. But even beyond his work, I mean he would go grocery shopping every Saturday morning and he would bring all the kids in the family who wanted to go and we would get one treat. We could spend a quarter each so we could get like a soda from the soda machine or like a sucker or something. And then every Sunday he would make lunch for our family and he would usually use that as an opportunity to salvage whatever leftovers were leftover. So it would be like mashed potatoes with like some leftover goulash snuck in or something. You know, he would just kind of create his own little inventions to use all the food in the fridge and yeah, just like very consistent. We, you knew exactly what to expect from him any day of the week. For a while he would, When we lived in Manhattan, before he had to leave so early to catch the bus, he would make breakfast for us every morning and there was a different breakfast every day of the week. So it’s Tuesdays, it’s going to be scrambled eggs and Friday is going to be pancakes. Like he was very consistent about that. And with work, you know, I think one thing we’ve talked about before and that is in my book is just he never took time off. I mean he was never taking sick days. He was always showing up to work. I mean, honestly, regardless of what germs he might be carrying, which we maybe think differently about today in the world, like do we all really want you showing up to the office while you’re coughing? Maybe not, but he would, you know, I mean he just never, he never took any time off. I think the most consistent he would take time off for in reflection would be for me, like taking me to the hospital. Hospital. I was a really sick kid, which I’m sure we’ll talk about more in a minute. But he would. He would be there to go with my mom. The three of us would go. And, you know, he would be there for all of the surgeries and even just, like, MRI days where we’re getting checked on. And, he was just really consistent in showing up for those moments, too, so. Yeah. Quite a man, my dad.

David Hirsch: Yeah, well, quite a role model in many ways.

Rebekah Taussig: Yeah.

David Hirsch: How would you describe your relationship with your dad?

Rebekah Taussig: What a big question, David. It’s evolved. It has changed over time. I think I’ve written about this a lot, and some of it I’ve shared publicly, and some of it I haven’t. I mean, I think as a really little kid, one of my most distinct memories of going through cancer treatments as a little, tiny person is the MRIs that I would have. And back in the day, these MRIs were, like, two hours long, and I would have to hold perfectly still in that machine for that whole time. And one of the most distinct memories I have is the sound of my dad’s voice reading to me in the quiet moments in that MRI machine. And anyone who’s been in an MRI knows that a lot of the time that you’re in that machine is like, banging, loud noises. You can’t even hear yourself think. And then in those moments of stillness in between, I would hear my dad’s voice reappear. And it almost felt like for, those loud moments in the MRI, it was like I was spinning out in outer space. And then for those moments when his voice would return, it was like the sun would reappear or something. You know, it was, like, very grounding, very powerful voice in my life. I think I was also a little bit in awe of him, a little bit intimidated by him. I would never want him to know how late I was sleeping in, for example, you know, Like, I would never want him to know that I hadn’t done anything all morning except read a book. You know, like, that kind of feeling. So there was awe, there was wonder. There was. I think it’s impossible for me to be able to articulate the gift of his stability in my life, because that is the only father I’ve ever known. I think I could never articulate or even understand the gift of that. so I have to recognize that that is a huge part of it, too. As I have gotten older, I feel like I have come to understand him as a whole person a little bit more and feel more comfortable just chatting with him on the phone. I think There was a time when I would have been nervous about that. I think his retirement has been a big part of the evolution of our relationship. That, he’s had more time to be a whole person, more time to

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Rebekah Taussig: have the energy for more. And I think watching him love my son has been a big part of the evolution of our relationship and the gratitude that I feel for the way that he loves my son. My son, adores my dad. He does these little books at school where they’ll ask him questions. One of the recent ones I saw was like, who is the funniest person that you know? And he wrote Papa. They delight in each other in this really unique way. So I could probably write a whole little book about just what that question that you asked me. But, yeah, in some ways impossible to pin down and name the enormity of his presence in my life.

David Hirsch: Yeah. Well, thanks for, at least scratching the surface on that. And, again, I can relate to your dad as a numbers guy and being very consistent. And coincidentally, that is my nickname as a grandfather as well. I’m Papa.

Rebekah Taussig: Oh, no way. I love it.

David Hirsch: Anyway, any other, father influencers? I’m thinking about your grandfathers, perhaps. What role, if any, did they play?

Rebekah Taussig: So my. My mother’s father I never met. He died well before I was born. He died quite young, actually, of a heart attack in his 50s and unexpectedly. But his presence just sort of. The lore of him has definitely shaped our family. He was a Lutheran pastor, and his call to that work or the thing that really drove him was caring for people and loving people and, taking care of people and. And so I think the way that his tender heart has been described to me, the way that he’s really thought about kind of people on the edges or the margins that need care, that has been a part of, kind of the map in my brain of values. My dad’s dad, maybe not surprisingly, given what I told you about my dad, definitely larger than life. A presence, an energy that, like, when he comes in the room, everybody’s like, oh, Robert’s here. You know, he was definitely like, a leader, a strong force. And he had seven children who gave, I think, 36 grandkids. And then he did not live long enough to witness this. His wife just died this last year at 101, but when she died, she had over 100 great grandkids. That’s just one little picture of the larger than life presence of Robert Taussig. And also kind of that scrappy toughness he grew up On a ranch. He became a veterinarian and had just a fierceness about him, a strength about him that has also sort of been a part of that map in my head of where I came from, who I came from, and who these people are. He died when I was in my 20s, unexpectedly. He was lifting weights into his 80s. But, yeah, I think all of the stories of these people just as much as even knowing at least my dad’s dad in real life, the stories have definitely been a part of the legacy behind me.

David Hirsch: Yeah, well, thanks for sharing. I would just summarize that you’ve come from good stock, at least on the, male side of the equation. And, my recollection was that, you’ve got multiple degrees from the University of Kansas, Master’s degree in English Literature, as well as a PhD in English language and literature. And I’m wondering, either prior to those degrees or maybe interspersed between them, what type of work were you doing?

Rebekah Taussig: And tiny correction. I got my master’s from UMKC, University of Missouri, Kansas City. And my PhD is from KU and in my undergrad was from UMKC as well. So. Yeah, that’s a good question. What was I doing before that? I mean, maybe some context that might be helpful here is that I didn’t really know what I was gonna do with my life or what the possible paths were. I mean, I. I really floundered with that transition from childhood into adulthood. And I got my undergrad was in creative writing. Like, what are you gonna do? What are you gonna do with creative writing? I don’t know that I was even imagining what I was gonna do with it. It was just like, this is. I’m good with words. This is what I want to do. So my first job was a florist in a grocery store. I just really didn’t have any momentum or any sort of path charted. So when I. When I went to college and realized that I, for the first time, that I really loved learning just for the sake of learning, I kind of just wanted to stay as long as I could. And I didn’t really know what I was going to do with any of that. So I. I just kind of followed a path driven by curiosity and interest and hoping for the best, that that would lead to something more. And, you know, when you are really digging into English as an academic interest, a lot of times that leads to teaching, or it leads to more academia. And I did that for a

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Rebekah Taussig: bit. So, like, I was teaching during grad school. I was a graduate Assistant teacher, which meant that I had like a few of my own Intro to English, Comp one, comp two classes. And as I taught more they gave me higher level classes. And so eventually I was teaching creative nonfiction and Intro to Fiction and things like that for like upper level undergrad classes. And then when I graduated and was like heading out into the great wide world post school, I mean, I stayed in school as long as anyone would possibly let me. And then it was time to go do something. so I, for a while I was teaching high school English at a small, like college prep school. I did that for three years. And the next sort of branch of the journey was that my book was coming out and I was gonna have a baby. And so I felt like I can’t do all three of these things at the same time. teaching takes up like as much energy and time as you will possibly let it. And I didn’t know how I was gonna balance the baby and the book and the teaching. So I just sort of took a leap out and said, I’m gonna step away from this for a while. And the stepping stones have continued to appear.

David Hirsch: Well, thank you for reflecting on, the circuitous, nature of your, education and work experience. And I don’t think most young people know exactly what they want to do when they’re younger. But you had that intellectual curiosity that kept you in the academic environment. And I think you probably accurately described it, maybe even how your parents would describe it. She stayed in the academic environment as long as you were allowed to. And you know, like you said, some, it leads to a path in academia itself or to teach or both.

Rebekah Taussig: That’s right.

David Hirsch: The way I think about it is that you can’t connect the dots looking forward. You can only connect the dots looking backwards and say, how did I get to where I am? And you made, you know, it sounds like a pretty, well thought out decision that I can’t do these three things. And as opposed to holding on to my work, and the book and then, you know, having Micah be a solo parent or maybe not giving the book the time and attention it might have needed just to be, a mom and a, an educator, you know, you made the logical decision, which is if you could swing it right from a financial standpoint, you know, your family wasn’t reliant on, on your income to sustain itself. You know, it’s very liberating. At least it seems like it would be very liberating, right, to be a full time parent. And, you know, have this second child of yours. Right. The book is like a child. It has a life. And if you can nurture it like you have, I think in a positive way, you know, it’s going to lead to other things. Right. Growth opportunities that, you couldn’t really fully appreciate or understand, you know, before it was out there. So, anyway, thanks for sharing.

Rebekah Taussig: Yeah.

David Hirsch: So, I’m sort of curious now what the backstory is on, your disability and how did it come about?

Rebekah Taussig: I was diagnosed with cancer just after my first birthday on my spine, which I’ve always struggled to understand what that could have possibly been like for my parents. And now that I have my own kid and I’ve watched him go through these ages, I really can’t imagine, let alone when you have five older kids above that. But, yeah. I was diagnosed with cancer in the late 80s. It was really aggressive, and my parents were sort of told that I probably wouldn’t live. And they flew me to New York City as this little baby, and they handed me over to one of the only. There was only two surgeons in the United States that would operate on me, and one of them was in New York City. I had surgery. And then the next two years of my life were chemo and radiation treatments. And I was still walking during that time when I. And then I guess it would have been about four. Like, a couple of years into that, I had a second surgery, more radiation. And by the end of all of that treatment and the accumulation of all of that, I, kind of slowly started dragging my legs more and crawling more. And my parents sort of noticed this change in me. So now, I guess the language would be like, incomplete paralysis. It’s kind of funny to reflect on because for a while I didn’t have a wheelchair. I would kind of use, like, this little aluminum walker. Sometimes my parents would push me in like this really, like a larger stroller. I crawled a lot of places. I was just sort of, like, figuring out intuitively how to get around. I mean, like, I mentioned at the front end that we would wander around the neighborhood. I had this little red tricycle that I would pedal with my hands. You know, I just kind of figured, I figured out how to get where I wanted to go. And then when I started school in first grade, they recommended that I get a wheelchair because I was just exerting so much energy trying to keep up with the basic pace of my class. And a wheelchair really freed me up quite a bit

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Rebekah Taussig: to put my energy into learning and all the other things that the kids in my class were experiencing. So I got my first wheelchair in first grade. I was the 90s, so it was definitely hot pink, and. And, I really didn’t want a wheelchair at first. You know, I think. I don’t know what. How it compares to kids getting wheelchairs in 20, 25, but I had only ever really seen wheelchairs as being something that, like, the people in nursing homes used. I. It was really frightening to me. And then when I got my first chair and I just felt the ease of it, I very quickly changed my mind. And I’ve had several wheelchairs since then, but that is definitely predominantly the way that I move through the world still.

David Hirsch: Yeah. Well, thanks for sharing. It sounds like it could have been a very traumatic experience for your parents, you know, having. Yeah, like you said, a large family, you being the caboose, and, you know, having these pretty consequential, health, care needs.

Rebekah Taussig: Yeah.

David Hirsch: And, I’m wondering as a youth, what was your first recollection about being different than your siblings or your peers? Can you reflect on that?

Rebekah Taussig: Yeah, it was nothing about my actual experience of my body. It was not anything of me realizing, like, oh, my legs don’t work the same way because I was just doing everything that I used to do, just figuring out how to do it differently. Right. Like, I continued to sleep on the top bunk of the top floor, and I just figured out how to do that differently. You know, Like, I just. Everything was the same, but different.

David Hirsch: I had a quick question about that.

Rebekah Taussig: Oh, yeah? Yeah.

David Hirsch: It seems like your parents might have said, oh, let’s switch. Let’s let Rebekah sleep on the bottom, bunk. But maybe there was something going on there that they said, oh, you know, if she wants to sleep on the top, let her figure it out.

Rebekah Taussig: Yeah, I don’t. You know, we should ask them.

David Hirsch: Yeah, I think so. While they’re still alive. That would be a good thing. Yeah.

Rebekah Taussig: Yeah. My main impression, and this could be totally wrong, this is just my childhood perception was that, they didn’t think about it very much. It was like. And I don’t know if that’s a product of, like, you have so many kids, and as long as it seems like it’s working, you know, like, I think that it was just like, as long as it was moving along, everything is. You’re juggling so much at once. Maybe that’s how it worked. I’ll ask them. I’ll ask them, David. But what I started to notice was the way that other people perceived Me, the kind of the reaction that other people around me had. I started to recognize that the sight of me, especially for people that were like, just meeting me for the first time or that I. Strangers that I would interact at the pool with or something, that the sight of me meant something to other people. And that could be a lot of things. It could be sadness. You know, I was like, bald for a long time as, like, this cancer patient. Just like really this symbol of something to people. For other kids, it was a lot of questions, like, trying to understand. I think for some people it was pity. For some people it was like, inspirational. But it just like I meant something right away to people that didn’t seem to be mirrored in the way that my siblings moved through the world. I think that’s what I noticed first, was just like, the way that people reacted to me.

David Hirsch: That’s fair. When you think back about your primary school years, what. What do you think the biggest challenge was?

Rebekah Taussig: I really point to our move as a pivotal shift for me. So when I was in Manhattan, as long as we lived there, I was going to school with people, many people who had known me my whole life. And so I really did feel kind of woven into that community as myself and as a whole person. And when we moved to Kansas City, I was in the middle of second grade. I think that was one of the pivotal times when I was really feeling the magnifying glass, sort of the gaze being quite pronounced and different than I had experienced in my previous school. The way I have come to describe it in retrospect is that I felt a little bit like the class pet of my classroom. There was an affection for me. I was never bullied. There was not cruelty for the most part, but I didn’t necessarily feel like I was equal with my peers or that I was accepted as just the same. And that is a difficult thing to articulate as a kid because, like, just for a tiny example, to illustrate what I mean, like, a lot of kids would want to push me around. they would want to push me to lunch or push me to recess. And I could push myself. It wasn’t like a need that I had, but it was sort of this. This way that people wanted to interact with me. And so I, like, started creating a list to keep track of people and give people turns, you know, like, well, you’ll get to push me on Thursday or whatever it is, you know, And. And that is confusing because it was like, people wanted to be near me, you know, it was like people wanting to interact with me, but

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Rebekah Taussig: the way that they wanted to was kind of odd or off or not the same as the way they had, interacted with each other. And it’s just a difficult thing to put my finger on, but I definitely felt like an outsider. I definitely felt separate.

David Hirsch: Yeah. Well, thanks for sharing. you can only look, backwards and sort of try to put it in perspective, because you wouldn’t have had the vocabulary or full perspective as a younger person. But, it does sound pivotal, the way you described it. Moving from Manhattan to Kansas City and leaving that environment where everybody just knew who you were and just accepted you because that was your situation. And then you get plopped into this new environment where the perception is that, you know, everybody else knows everybody. Right. Maybe they all grew up with one another, and I’m the new kid in the block like your siblings would have been, and new to their environment as well. but, you know, you stood out more because of your physicality or lack thereof.

Rebekah Taussig: Yeah.

David Hirsch: And, you know, it’s not good or bad. but, you know, maybe this is a step closer to the real world. Right. Where you’re not always in the environment that, you know, you grew up in or are most familiar with. And to operate successfully in the bigger world, you know, you need to be outside of your comfort zone. And that’s what I heard you talking about, which is you are navigating this situation outside of, you know, the comfort zone that you might have been, in had you not moved.

Rebekah Taussig: Yeah. That’s an interesting way to think about it, David. And I like the way you say not good or bad. I mean, it’s sort of just like, it is what it is. And what are the. It’s interesting to think about, like, what are the skills that you learn through that experience? Because now I’m plopped in the middle of places where nobody knows me all the time. And I do feel like I have developed a skill set for that that I may not even be fully conscious of. But that’s an interesting way of thinking about it.

David Hirsch: So you give your parents mostly high marks on the way you were raised. But, looking back, you question if there was a way that the. Could have. Should have maybe done something different, how would you explain that?

Rebekah Taussig: I. Yeah, I think this is a good question. And I. I think one of the things that I have, like, a way I’ve come to think about parenting is that, I think that my parents gave me the best of everything that they had, and I reaped all the benefits of that. And then there were things that they didn’t have that they wouldn’t even known that they didn’t have. And sort of over the course of my life, I’ve sort of pieced together those extra things. I think that it almost feels inevitable in parenting that we, like, we give the best that we have, and then there’ll be things that we don’t have. And life can be, you know, hopefully life is long, and hopefully our kids will go on and pick up some of those extra things. So I think, for me, I think the way that my parents raised me was very much that I was the same as my siblings and that they would not sort of coddle me or go out of their way to sort of make anything easier for me. You know, like the bunk bed. Right. I mean, we didn’t get a ramp to go into our house until I learned to drive, so. And I was 18 when I learned to drive. Yeah, Right. So, like, I’m getting into this house with stairs, and I, you know, every single day, I get out of my chair and climb up stairs, like, crawl up the stairs, and somebody’s gonna lug my chair. Like, that’s just the way that we did things. And so I think part of what came with that, ah, spirit of, like, you’re not any different than your siblings is that I didn’t really have the opportunity or bridge or space to meet other people who were like me. That was not a part of my. My upbringing. So, like, I didn’t play adaptive sports. I didn’t go to camps that had kids with different disabilities. Like, I didn’t know I would run into people who had disabilities. But there was no space to develop those friendships or to really foster conversations about what was unique about our life experiences or things that we might share that our siblings might not. I didn’t have any of that. And so I think that the gift that my parents gave me was this scrappiness that I treasure in myself. This, like, I can pivot, I can be adaptable. I can be flexible. I can find a way to. To make anything work. You know, that’s a gift to me. Also, I felt very alone in that I was confused by the way that some things were quite a bit harder for me than for my siblings. I didn’t really have language to understand why I was so scared of adulthood, why I struggled to figure out what kind of job I could have. There was a lot of, like, fraught narrative that I internalized about myself as, like, a romantic partner and not feeling like, anybody would want to be partnered with me. Like, a lot of things I was carrying that I felt really alone in. And so I was probably

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Rebekah Taussig: probably in my late 20s when I started to connect with more people who moved through the world the way that I do, when I started to read more stories, by people who, who understood my kind of the unique parts of my life experience. And that really was transformative for me. And of course, I wonder, like, what would it have been like to find some of that sooner? But, you know, I. Who knows? Who knows what that would have been? It, is easy for me to point to the gifts that I received from, the way, the little world that I was raised in. And thankfully, you know, I kind of was able to fill in the gaps a bit later. But it is, it’s both and it’s completely both and kind of tucked into there.

David Hirsch: Yeah. Well, it’s good that you’re recognizing the things from a positive perspective as opposed to thinking, oh, I got slighted or lesser than. And, you know, your life’s turned out really well so far. You’re still a relatively young woman, you’re married, you have a child, you know, you have a career, and, you know, you’re able to pour yourself into the things that you’re excited about. You know, look at your peers. I suspect that there are some of your friends that you grew up with that aren’t married, that don’t have kids, that, you know, are sort of still floundering. So consider, you know, the path that you’re on. A, pretty successful one. So.

Rebekah Taussig: Yeah, I like that you say that too. I, you know, as I’m talking about this with you, I feel cautious and protective because I, I know especially for my mom, it’s really hard for her to hear me talk about anything that they maybe missed. I mean, and I can only imagine, right, I can only imagine one day when my son inevitably gets on a podcast and he’s gonna tell the world, you know, like, maybe this could have been better. I know that that’s painful for my mom, but what I hope and what I would love for her to feel in those moments is exactly what you’ve said of, like, we had to do something, right? Because look at this life that she’s. She’s living and that she’s built and, and being a part. That’s how I would hope that as a parent, I hope that I’m able to do that myself, because I can only imagine how hard that kind of after the fact reflection is from your own children.

David Hirsch: Absolutely. And if they raise six kids and you’re the runt of the litter, don’t read too much into that.

Rebekah Taussig: Oh, no, I love that.

David Hirsch: You know, mission accomplished. Right. Hopefully they’re looking back on their parenting and now grandparenting experience with, you know, a certain high level of satisfaction.

Rebekah Taussig: Yeah, right. Yeah.

David Hirsch: But, hey, you know, she lived, she let a. A, positive upbringing. Right. And, you know, you learned some really important life skills along the way. Right. That they didn’t further handicap you by, you know, making things easier for you and that, you know, you’re the person you are because of all these experiences. so. I love it.

Rebekah Taussig: Yeah, me too. Me too.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a great dad coin. Thank you. Now back to the conversation.

David Hirsch: So, let’s talk about your book, Sitting Pretty. The View from My Ordinary, Resilient Disabled Body, which came out in 2020. That was a pretty dramatic, period of time. Right. During the pandemic. Of all times, I thoroughly enjoyed listening to your book via audible. Your voice, your sense of humor. I’m so glad that you took the time to do that.

Rebekah Taussig: Before we talk about anything else, can we just start with awe? I am completely in awe, ah, of this moment we’re having right now, you and me. When I was younger, disability didn’t seem to exist outside my visits to the hospital and seating clinics for repairs on my wheelchair. For the most part, I felt really, really weird and not in a cool MTV’s Daria sort of.

David Hirsch: So I put together a list of questions that I wanted to reflect on. So the first is, let’s, start with the title, Sitting Pretty. You describe your body as an ordinary and resilient. what. What does that framing mean to you? And why was it important to lead with that message?

Rebekah Taussig: I don’t know that I would have chosen the Sitting Pretty as the title of the book, except that it was. It’s the Hand, my Instagram handle. and so I started out as writing on Instagram. Sitting Underscore Pretty was my handle for that social media platform. And when it was time to publish

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Rebekah Taussig: my book, my publishers were like, well, that has to be the title of the book. So. Yeah. And Sitting Pretty, I mean, that was my now husband Micah, and I, like, brainstormed that Instagram handle on a napkin in a coffee shop. We were thinking of all kinds of disability puns that were quite cringy. And for me, what it came down to is wanting to come up with, a phrase that would be a little bit subversive to the typical narratives of disability that we have. So that’s where the Sitting Pretty came from.

David Hirsch: So your book is, so honest and vulnerable. Were there any parts that felt especially difficult to share out loud that pushed you to maybe keep them in?

Rebekah Taussig: For sure, yeah. I mean, in different ways. Right. Like the. There’s a whole chapter on teaching More Than a Defect, I think is the name of that chapter. And I was still teaching high school when I wrote that chapter. So the things in that chapter are so fresh, and they were really painful for me to write. I mean, part of what you will see in that chapter is all of my fumbling and stumbling and my first experience teaching high school. And I’m trying to introduce a lot of the ideas that I had learned in graduate school about disability, kind of defining terms for them, like ableism and trying to sort of teach them a different way of looking at disability. And it was a rough year. We had a lot of hard moments. And also it felt really important, like what the ideas that came out of that, the tensions that came out of that felt like, worth looking at, Felt worth it to me to write that. So that was a hard chapter for me to write and a hard chapter for me to share and be seen in. Every day that I sat to write that chapter, I felt like I was diving into an ice cold pool of water. Like, here we go. All right.

David Hirsch: I love it. I love your transparency, and your reflecting on the fact that you were teaching high school at the time as well. Now, that’s a challenging situation in and of itself when you know you’ve got a bunch of, I was going to call them young adults, but they’re not even adults yet. You know, young people whose brains, you know, they’re very opinionated, but their brains are clearly not fully formed.

Rebekah Taussig: Right.

David Hirsch: And, there’s a lot of learning that goes on.

Rebekah Taussig: Yes. And that can be messy.

David Hirsch: Yeah, yeah, exactly. So you’ve been a strong advocate, for disability visibility. What does real visibility mean to you? And where do you think we’re still getting it wrong? Especially in the media or in education, for that matter?

Rebekah Taussig: To me, I think so. Much of it is about empowering people to tell their own stories. I mean, like I went into my PhD studying literature, 19th century literature, but part of my work was looking at the progression and the evolution and the history of disability narrative and the idea of people with disabilities telling their own stories for themselves, being in charge of that narration, deciding for themselves what these experiences mean is relatively new both in literature and in film. That most of the momentum behind these stories is like non disabled people writing the scripts, acting out the parts, writing the books. Disability has often been used as like a metaphor in a story or like a side character to teach the main character something. I mean it’s. We have a lot of momentum in the ways that these stories have been told and that plays out in the news as well. We often see people, like you mentioned media people telling news stories from the perspective of the non disabled reporter or even the non disabled person in the room. That’s where we have some of the tropes around, like stories that feature like the cheerleader who asked the kid with the disability to prom. And we’re all gonna like cheer for this tremendous act of kindness where that’s really centering and focusing on the experience of the non disabled people in the room. So I think part of the work, or at least what I see as a big part of my work, is wanting to empower people to tell their stories for themselves. That can be new for a lot of us. I would also add that I think part of the reason that we don’t have as much momentum behind telling our own stories is that oftentimes we are born into families that don’t share that experience with us. And both our families and us often learn about disability through hospitals and doctors. And like, that’s kind of the main way that some of our, we come to understand our own stories is through medical experiences. I mean, that was definitely the case for me. and so even understanding your own story through a medical arc of like injury or diagnosis, treatment, and then the outcome of that treatment as sort of being the arc you see for yourself. And so opening that up for people and hopefully like empowering us to reflect and be able to tell that story for ourself. What’s important to us, what do we think is the conflict or tension.

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Rebekah Taussig: That to me feels like a big part of my life’s work. Wanting those of us who move through the world with these bodies and minds to be invited and empowered and equipped to decide for ourselves what this all means.

David Hirsch: I love it. And that’s What I like about the world of podcasting is that I have this opportunity to shine a bright light on what I think are the positive things that are going on in the world of disability. Because everybody’s story is a little bit different.

Rebekah Taussig: Yes.

David Hirsch: Right.

Rebekah Taussig: Yes.

David Hirsch: And I think we all want to be seen and understood, and we don’t all have the opportunity, to express that.

Rebekah Taussig: Yeah, you’re right. I mean, I think that’s a huge part of it. David, is just like, every single one of these stories is unique, and a lot of times I feel like they get flattened for one reason or another. And I think you’re right. Having the space to tell our own stories, just like you invite people to do all of the time, I think that’s incredibly powerful. I know I’m biased. I think it’s incredibly powerful.

David Hirsch: I love it. So, you might or might not know that I’m, a father of five, and three of my five children are women now. They’re young adults. my girls are 28, 31, and 34. So the next question has sort of this in mind. There’s a powerful intersection in your story between disability and feminism. How do you see those two identities shaping each other? And where does the mainstream feminism still fall short?

Rebekah Taussig: Well, if you had asked me what chapter was the hardest to write, I would have said that one. That chapter was incredibly hard for me to write because I didn’t know how to explain it. And I still wrestle with that. Like, what did the intersections of these experiences mean? Disability to womanhood and womanhood to disability. I think what I came to in that chapter, and which still feels kind of true, is that in a lot of ways, disability erased me from the storylines typically imagined for women. Kind of threw me out of the agreed upon sort of list of concerns and list of priorities. So I sort of. I grew up in this world where I sort of came to understand that, like, getting married was one of the most important things I could ever do. And yet I also grew up in a world where my disability seemed to disqualify me from that. And the same would be for motherhood. Right. Like, I saw the ways that the world seemed to expect that my sisters would become m mothers, but never expected me to become a mother. So there was this way that I was sort of thrown out of that story arc. But then at the same time, I think that, like, the things that we typically list as some of the highest concerns for women are exacerbated by disability. Right? Like, employment, you know, like, a lot of conversations about women in the workforce have to do with, like, the glass ceiling and pushing through that glass ceiling. And yet, like, women with disabilities are much more likely to be unemployed by. Than their disabled counterparts. So there’s this really weird back and forth where you’re outside of the storylines, but actually you’re more vulnerable to some of the vulnerabilities. And both of those things are happening at the same time. I don’t feel like an expert on, like, what feminism even is in 2025. I don’t know what, what, what. How do we define it? I mean, I think what, in its simplest terms, it would be that, like, we want women to have options to be in the world the ways they want to be in the world, maybe. And I think. But I think that we would say that that’s true for all, all of us. Like, so maybe that is a way we would talk about the limitations. Is that a feminism that isn’t thinking about all of the people in the room isn’t really doing a full job. and I think, you know, it’s interesting. I have a son now, and just like, reading and learning more about, like, what it’s like to be a boy growing up in 2025. And they are very specific list of concerns that I have for him. Right. In ways that I want him to be cared for in the world and thought of and considered in the world. And so I think that if I would be thinking about, like, social movements that I would ascribe to, I, would want to be living in a world where we’re looking at all the different and unique vulnerabilities that come from all different kinds of embodiments and caring for people the best way that we can. Every single one of us is just like an endless web of intersections of different experiences. And there’s vulnerability built into a lot of that. and being mindful of that and being curious about what unique barriers people are facing, I think is important, important work.

David Hirsch: Yeah. Well, thanks for articulating that. So I’m thinking about, the parents of kids with disabilities who are listening. What advice would you offer when it comes to building confidence and independence from a young age?

Rebekah Taussig: Yes, great question. I mean, I think I would

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Rebekah Taussig: point to part of how my parents moved through the world. In part, I think that there not automatically lowering your expectations or being too afraid for your kid. I definitely took a lot of cues from my parents in terms of what they were worried about or not worried about. I think that, you know, if we were to point to some things that I could have benefited from as well. I do think there is something incredibly powerful about being connected to other people that are similar to you. Being in community with people who are similar to you, being among people who understand maybe some of the unique textures of your world, so you don’t feel so alone in that. I think that sort of solidarity and connection is really powerful, I think. And maybe what I would tag on to that is that picture of some role models. Not just people who are your peers in your age group who understand your experience, but someone who’s further down the road, who you can look to and imagine yourself into that storyline and maybe even if you’re lucky enough, like, mentor you, talk to you about what that was like, bring you into some of what, how their path unfolded. I think that’s really important. And, you know what? Luckily enough, in the world that we live in today, I think that’s more available to us than it was when I was growing up. It is not hard to find adults, or not as hard, I should say, to find adults who have been down this path. You know, they’re on the Internet. You can find their books even. Right. We have more options for role models, I think, in the world that we live in now. And I think that’s important.

David Hirsch: Yeah, I would agree. I think the world of technology and social media has, brought the world closer and closer. Right. We’re just literally keystrokes away from connecting with others that have similar situations to our own. so, you know, there’s fewer excuses right, today than there would have been a decade, or generations back, you know, for finding those connections, those peers, or the role models. And, I think it is really important to find other people who are in a similar situation. A relatable situation.

Rebekah Taussig: Yeah.

David Hirsch: Because, you know, why would you expect your siblings, your parents, you know, others that. That, you know, you might have grown up, with, whether they’re family or neighbors, etcetera, to fully understand or appreciate what it’s like. Yeah, it’s a pretty tall order.

Rebekah Taussig: Yeah.

David Hirsch: So, anyway, I think that was a really, really good reflection. 1. So, as a former teacher, what are some of the ways schools and educators can go beyond compliance and foster real inclusion in the classroom?

Rebekah Taussig: Oh, my gosh. Oh, I love this question. Yeah. I mean, before I say anything, I want to put a caveat on that. I think that teachers are already being asked to do a lot. I realized that tacking on anything more to what they’re already doing can feel impossible. And I think part of that is my wish, is that for more support in this incredibly important work. But I think a couple of things that come to my mind is being really curious and open to all the ways that we can learn and being really curious and open to all of the tools that can assist us in that. I think that. And hopefully this is changing, but I think even when I was teaching, I would feel a little bit of skepticism sometimes or resistance to an accommodation or adaptation that a student required or asked for. Even something simple like audio books. Like, I remember being with teachers who were like, that doesn’t count as reading. You can’t listen to the audiobook. And to me I just feel like, well, what is the actual goal of what we’re trying to teach? And does the audiobook really diminish that goal? Or is that actually very much in line with what we’re trying to do? Right. Like, being more open to all of the different ways that we can engage material, all the different tools that can help us get there. I think that’s important. Banishing the shame in needing a support, a tool, anything extra, and assuming from the beginning that this group of human children will learn in different ways, will express what they’ve learned in different ways. And kind of assuming that from the get go, I think, as opposed to assuming all of them will learn the same way and all of them will express that learning in the same way. And maybe there’s a couple of them outliers to this. I think really flipping that and starting from the assumption that we all learn differently and we have different ways of doing that and expressing that, I think I, know that’s kind of lofty and big, but I think that that’s, that’s how I sort of m. Began to move through my teaching was kind of flipping that assumption.

David Hirsch: Yeah, it’s a good insight. I think that we realize today that the one size fits all model where everybody at a particular age. Right. Just because your

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David Hirsch: your birthday.

Rebekah Taussig: Right.

David Hirsch: Has a certain year associated with it, that, you’re all going to be at the same level and, you know, recognize that, you know, some people have different abilities. It’s not, we’re not talking about physical abilities, we’re talking about intellectual abilities.

Rebekah Taussig: Yeah, right.

David Hirsch: There’s a wide range of intellectual ability and for some it just takes longer.

Rebekah Taussig: Yeah.

David Hirsch: Some learn visually, some are auditory learners and, and you know, the sooner the parent can understand what their child’s, strengths are. Right. As far as their intellectual ability, they can play to those strengths. Right. So if they’re having difficulty seeing something. Well, then maybe the auto version, the audio version of something is going to allow them to consume the information in a more comprehensive, meaningful way than struggling. Right. It’s like, you know, I think of it as a leadership type of concept. If you broke life into like 20 or 25 different attributes, there’s certain things that we would have as our drivers that would be our strengths. Right. One or two things that really, you know, propel us going forward. And I’ll just use a simple one. You know, let’s just say that math is not something that you’re good at and you bring a report card home and you get straight A’s, except for math. And, you know, it’s pretty obvious that you’re going to be spending more time with a math tutor and you’re going to be spending more time going over math homework and math problems. And, you know, is it possible that, you know, you might be able to get that grade up? Or is that just one of those things that, you know, you sort of struggle with? You’ll, you don’t have to be an, expert in all subjects and oftentimes we are focused on what’s not working. And a disproportionate amount of our energy and resources goes to trying to get somebody to do something that they’re just not apt to do.

Rebekah Taussig: Yeah.

David Hirsch: And, you know, if we were to funnel those same time and resources into what their drivers are, what their strengths are, you know, that’s going to allow them to differentiate themselves in the world. And as long as you can find something that compensates. Right. For maybe if it’s math like we were talking about, that, you know, you don’t have to be, you know, able to do mathematics in your head or high level equations, but you do need certain basic levels of competency. So anyway, so let’s switch gears and talk about podcast briefly, the title of which is Scratch this Parenting and Reparenting Off Script with your co host, Caitlin Metz. my understanding was that you started this back in 2024 and that, just listening to a number of the episodes the two of you love, yucking it up.

Rebekah Taussig: We can swirl around. Yeah, yeah, yeah.

David Hirsch: So, whose idea was this? Where did the idea for this come from?

Rebekah Taussig: Oh, that’s, yeah, and tiny little note, it’s, in case people are looking for it on Apple podcasts or whatever. It’s, Scratch that. Parenting and Reparenting Off Script. Yeah, I mean, maybe they’ll find it either way, but, it was my idea. I am an avid podcast listener, and if you can’t tell David, I like to chat it up. And it’s my favorite thing. I had been brainstorming, like, different podcast ideas and trying to think, you know, what does the world need? And what kind of conversations are kind of missing from the bigger conversation. And of all the ideas that I had, talking with my friend Caitlin about parenting was the one that I just would want to do even if no one else was listening. It was like the idea of checking in every week and hitting record and talking about these things. I would do that whether or not there was a microphone in front of me. Happy Monday. Here we are. Here we are. Okay, today we wanted to kind of do a fun little exercise together and, like, invite our listeners to participate if they want, if it feels comfy and exciting. and I don’t know how many people have heard of this practice already, but Elizabeth Gilbert has. Caitlin and I became parents around the same time. Caitlin is a non binary parent, and I am a disabled parent. So we were both kind of approaching parenting in a way that felt kind of off script or, like, different than what is typically imagined for a parent. And we were really curious about, that and what it meant to embody parenthood in a way that was different than we had often seen around us. And so the premise of the podcast that we, we came up with together was being really interested in the ways that people are going about parenting in a way that is a little bit different and sort of scrapping together something that works for

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our unique ecosystem, and talking to other people who are kind of going about life off script and how they’re putting that new script together, what those revisions look like. So that’s how we started. And I guess we, I think we just recorded. We’re like, in the 42nd episode or something. We are much far behind. We are very far behind you, David. We are like little newbies in the world of podcasting. But, we’re having fun.

David Hirsch: Yeah, well, that’s really important. I love the energy, and, I seem like the most unlikely person to host a podcast, at least, you know, going back seven years ago. Like, know nothing about it, about interviewing people or editing or production and. But, you know, you have this kernel, of an idea, right? And, you know, if you’re sincere and consistent with it. Right. You know, you’re climbing the learning curve. That’s the way I think about it. Putting your thoughts out there. You know, everybody’s on a little bit different journey. And what you’re doing today might not be what you’ll be doing a year or three years from now, if it’s meant to be. You know, a lot of podcasts, I think the average podcast, if there’s like 5 million of them out there or something, they’ll have like five or six episodes. Right. And it looks like it would be fun and you know, it’s like part of my identity or something like that.

Rebekah Taussig: Yeah.

David Hirsch: And you realize this is a lot of work.

Rebekah Taussig: It is. Yeah.

David Hirsch: At least from my perspective. I, put five or ten hours average into each, the episodes before they’re recorded, just to be prepared. And you know, I don’t know that most people think that they would have whatever amount of time they’re preparing for their episodes. And then there’s the editing and production. Right. And if you don’t have that as a skill, you’re going to have to hire somebody.

Rebekah Taussig: Yes.

David Hirsch: Now you’re looking at some out of pocket costs to do things and you know, where is that going to come from? You know, we’re not Joe Rogan or NPR or something like that. And you know, you better find a way to at least supplement the, the cost that you have.

Rebekah Taussig: Yeah.

David Hirsch: So I just, just love the energy that you, the both of you bring.

Rebekah Taussig: Thank you.

David Hirsch: I want to go back to the idea, of advice and I’m wondering if there’s any advice that you can share with parents, specifically dads, that, you know, might find themselves in the situation that, you know, your parents found themselves in, you know, with a child that, you know, has a difference of some type.

Rebekah Taussig: Yeah.

David Hirsch: Physical or intellectual difference. What type of advice would you offer them?

Rebekah Taussig: I think if possible, and I realize this will be different depending on the situation, you know, the experience of your kid. But if possible, I think it is incredibly powerful to seek out narratives and voices of people who have experienced what your kid has experienced. So a similar diagnoses or embodiment or whatever that is seeking out adults who’ve been down that path. I will tell you, every single parent that reaches out to me and says, my kid has this disability or my kid uses, a wheelchair, I want to know what that experience is like. So I read your book. I just feel like weeping every time because the gift of that, of a parent who is really curious, who wants to understand, who recognizes that there might be a gap in that experience, but wants to bridge it and understand as much as they possibly can, I think that’s powerful. I Think that’s beautiful. I think that’s an expression of love. So I think seeking out those narratives, whether that’s a book or a YouTube channel or whatever it is, I think finding a way to slip into that experience yourself is powerful.

David Hirsch: Yep. Pearl of wisdom. Is there anything else you’d like to say before we wrap up?

Rebekah Taussig: David, I think you’re so good at this. I just have loved spending time with you. Thank you for the thought and the care that you bring to, to these conversations and for the giving, like the literal microphone to people to share their experiences so people know that they’re not alone. They can see themselves reflected in other families. I believe that’s deeply powerful and you’re doing it so well.

David Hirsch: Yeah. Well, that’s very nice of you to say. And I want to give a shout out to Time magazine for publishing, some of your work, because I think it was the Time magazine article that appeared in just March, I think it was, of 2025 that caught my attention.

Rebekah Taussig: Yeah, that’s right.

David Hirsch: So, you know, I think that it’s great that, you know, they find work like yours important because while fewer people are reading Time magazine, maybe the physical copy of it, I’m Still a Dinosaur. I love it that, they do have a very large, audience. And I think it’s really important. If somebody wants to learn more about your book, Sitting Pretty, the View From My Ordinary, Resilient Disabled Body, or your podcast, Scratch that, or just to contact you, what’s the best way to do so?

Rebekah Taussig: My website is kind of my hub. You can find links to my everything, on my website,

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Rebekah Taussig: my podcast, my substack, my Instagram, my book. I also have a picture book that just came out in April called We Are the Scrappy Ones that’s written for kids with all kinds of disabilities. so all the information about all of those things is on my website, which is just my name, Rebekahtaussig.com.

David Hirsch: I’ll be sure to include that and some other information in the show. Notes that will make it as easy as possible for somebody to find you.

Rebekah Taussig: Thank you.

David Hirsch: Rebekah, thank you for your time and many insights. As a reminder, Rebekah is just one of the individuals who’s part of the Special Fathers Network mentoring program for fathers raising a child with special needs. If you’d like to be a of member mentor father or are seeking advice from a mentor father with a similar situation to your own, Please go to 21stCenturyDads.org Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your help. Rebekah. Thanks again.

Rebekah Taussig: Thank you David.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Amgen. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing, and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

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