The Ocean Podcast

Deep Dive: Rebekah Taussig - Part 2

Episode Summary

Author and speaker Rebekah Taussig is once again with us, discussing the universality of disability, life during COVID, and dealing with the unexpected.

Episode Notes

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Rebekah Taussig is a Kansas City writer, teacher, speaker, and consultant with her PhD in Creative Nonfiction and Disability Studies. She’s spent most of her life immersed in the world of writing and reading – as a student, teacher, and author – because she believes the words we use and the stories we tell matter. She’s especially invested in the nuanced experience of marginalized identities, personal narrative, and creating a more inclusive world together and for all of us. You can find her writing published in TIME magazine (here or here), on her Instagram account, @sitting_pretty, or in her memoir in essays, Sitting Pretty: The View from My Ordinary Resilient Disabled Body released by HarperOne in August 2020. She lives in a tiny, old house with her fussy family of tenderhearted snugglers. You can follow her work and sign up for her newsletter at www.rebekahtaussig.com.

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00:35 Interview

30:55 Credits

Episode Transcription

Welcome to The Ocean, Episode 25; I'm Adam Mosley. Today we're picking up our conversation, once again, with author and speaker Rebekah Taussig. And if you were around for last week, you know, she's got so much more to share with us. And I'm so happy we get this opportunity. So stick around.

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Adam: Well, you know, occasionally you just get into one of these conversations, and it just goes on and on and on and dives into so many new topics. Rebekah Taussig was one of those conversations; we talked for well over an hour. And there's so much good content here, I just wanted you guys to hear more of it. So we're gonna pick up this conversation again, right where we left off last week.

One of the things that you talked about in the book, and honestly, I don't know if you say these words, or if it was just my interpretation, but it's kind of this idea that disability is a spectrum. And you know, one of the things I know you do say is that everyone, if they live long enough, will eventually become disabled. That, to me, like, that's just a little nugget that just really stuck out to me that personalizes some of the more academic theory stuff.

Rebekah: Well, I...yeah, the disability as a continuum is an interesting idea. And I don't think I say that explicitly. But I will say that I've actually come to think of disability as a web of continuums. So, it's a whole web of continuums that are constantly shifting, depending on time, and depending on space. So depending on, you know, we're always constantly traveling through time. And we're always shifting in different environments. And we have this whole host of abilities and disabilities that are constantly moving all of the time, depending on where you are in time or space. I mean, like, it's interesting. I just had a baby, and I went through the whole, like, being pregnant thing. And it's amazing how being pregnant overlaps so much with my experience of disability, but it's this very temporary moment in time, right? And I, you know, connected with other women who would never think about being pregnant as a disability, but like, by the time you're at the end of being pregnant, a lot of us are pretty much functionally disabled, you know? Like, you need the world to adapt around you, your body has different needs than it did before. So all that to say, I think we don't tend to think about...we tend to put disability in these really tiny, rigid categories, and I happen to live in a body that very tidily fits into that, right, like a wheelchair is the symbol for disability. So I'm disabled, and that feels black and white. But I don't think that actually like if you just kind of tossed that word out for a minute—"disability"—and just think about a body and having the body and what limits your experience in that body, and where and when and how and why do you have access in any given moment? I think that is a much sturdier way of thinking about our bodies in general. Like you mentioned, we are all susceptible to the frail...I mean, like, we all have bodies, we're all susceptible to the frailties of those bodies, and we will all age, and it's gonna happen. And as you age, things tend to wear down and break down and get complicated, you know, and some of us are experiencing that earlier. And some of us, you know, might not ever get to be older. And that happens too. But for the most part, we are in this together, you know, and I feel like COVID has heightened that in some ways. And I don't know, some people have ignored it harder than ever. There's that too. But we are all vulnerable. And so, as much as we can think about those vulnerabilities ahead of time and think of us as a part of something together now. I just think that's better.

Adam: Yeah, yeah. I mean, one of the things that you that you touch on in the book...I don't think you really go into a whole lot of depth on it is this idea that, well, first of all, that disabled people are more than their disability. Like, you are an academic, you're a teacher, you're a consultant. You're not just a person in a wheelchair, you're a person that actually has a brain and has something to offer the world. But also that in building our world with different disabilities in mind, that we actually create a better world for everyone. And one of the examples that you use is is the cutouts on the sidewalk. Can you just rehash that, for those who haven't read the book?

Rebekah: Yes, because this is one of my favorite things to talk about. I feel, I think we see this over and over and over again. I think when we build our world, when we build physical structures, when we build social structures, when we build classrooms, I think if we have the disabled body, the disabled person in mind when we design things, we will come up with the most innovative, flexible, inclusive designs for everyone. So curb cuts were designed with wheelchair users in mind, as ways for wheelchair users to move from block to block in their neighborhoods and be able to access their community a little bit more. But as soon as we created curb cuts, like, all kinds of people were surprised by how much easier the world suddenly was. Because parents with strollers and vendors with food carts and people with chronic pain who just didn't want to take a giant step up, but a smaller incline would benefit them. It just made the world easier for more people, not just wheelchair users. I think closed captioning is another really good example of that, right? Like, especially now we're all scrolling on our phones, you know, at work, or in the airport, or wherever. And we don't necessarily want everyone to know what the audio content is. So we're reading closed captioning all the time now. But closed captioning was created for people with hearing impairments. And so that's the kind of thing I love to think about. And I like to think about other ways we could do that. Like, what would it mean for us to have disabled people in mind when we are creating our ideas about love and romance? You know, like, what if that was part of what we thought, or what we imagined for ourselves, when we thought about partnership, was bodies that have vulnerabilities and limitations, you know, as opposed to imagining that we'll be partnered with someone who will never need caregiving ever.

Adam: And that really comes down to having representation in the room, right? Like in the writers rooms of TV and film, in the world of architecture, in the world of engineering. Because it's not always about the creativity of the person. Sometimes it's just about the perspective and thinking about those things.

Rebekah: Yes. 100%? Yes. Like, I think every table, every writers room, every design team could use that perspective and get it because it's not even a matter of being smart enough or creative enough, like you said, it's just lived experience—the things that we don't think of when we don't have to think about them.

Adam: Right. Right. You know, I think about in my life, the little things that my wife has sort of alerted me to because she's short, right? Like, I'm a little bit over six feet tall. She's like five feet tall. And so like things like upper cabinets that she can't reach without a stool, you know, and places that we sit where she goes like, yeah, my feet don't touch the ground here. I don't think about those things because I don't have those problems, right? The things I think about are like my knees crammed into the back of the seat on the airplane, you know, that she doesn't have a problem with and like, we're all just better together, right? Like, we're better when we have these different perspectives in our lives. That's one of the big pushes that listeners of the podcast hear me make all the time is that we're better when we have a variety of perspectives speaking into our journey. And it honestly, it's a more enjoyable journey, too, than being surrounded by people who are just like you all the time.

So you've you've mentioned a couple times—and by the way, the whole time that we're doing this interview, I'm watching your cats in the back. And they're like just cuddled up. You can see them there, like, snuggling with each other. They're so happy.

Rebekah: Ah, yeah, they need each other these days especially. Yeah, they that's their favorite. They're always with me on my Zoom calls. They're like fixtures. I forget they're back there.

Adam: So you've mentioned a couple of times that you had a baby. So ,that's something that came about between the time that you wrote the book and now. Which, by the way, you released the book, in the middle of a pandemic, which had to be a challenge, but also meant that you didn't have to go on some crazy book tour. That's a plus. But so, yeah, so you released the book, and you had a baby. What has that done to your world? Like, that whole motherhood thing?

Rebekah: Like I know! I know, it's been unbelievable. I finished the book on...like the full manuscript for it. I sent it off on a Monday evening, like, late at night, on a Monday evening. I was very surprised to find out that I was pregnant less than 24 hours later.

Adam: Oh, wow.

Rebekah: And then something you didn't mention, but was also happening at the same time was the next Tuesday, my partner, Micah, we were very shocked to find out that he had cancer. So all of the...yes, all of those things were happening at the same time. And then, right before our baby was born, there was the pandemic, which happened, all is continuing...still happening. His whole life has been under the umbrella of this pandemic. And it's weird to refer to it as an umbrella, because umbrellas shelter us from things. I don't think that that's a very good analogy. Yeah. And then the book came out when Otto was like three months old. So it's just been surreal. It's been like, What? Is there a normal world waiting for us after this is over? I don't think so. It just feels like everything has been thrown up in the air and look, and who knows where this will land or what it means. It's all in flux. And like you mentioned, everything's through Zoom. So I I'm doing like, library readings, and Zooming with podcasters. And it's all happening in this room, like, my house. So it's all like a little bit of a weird dream. And I think, you know, like we mentioned, we talked about like that feeling where you start to see something differently. And then suddenly, everything, like you realize, like that you have that Earth shift in your brain. (Earth shift in your brain? That's not a very good analogy, either.) But, like, when everything changes, Otto being born and the last nine-ish months with him have felt that way to me, as well. It's been a new...it's been a fresh turn of where everything feels different and new again. And in a way that I'm not very articulate about, you know.

Adam: When you have a child as young as that you don't have to be articulate about it. You’re just trying to survive.

Rebekah: Ready for my next nap! Yeah, he doesn't love...he will do anything to not sleep. So that's been the last nine months as well. Yeah, I think that he is bringing up parts of that internalized ableism that we mentioned that I thought had been, you know, taken care of. That's all in the past. It brought up a lot of things like that about, you know, me having to grapple with what a mother looks like, what it means to be a mom, because this is a different kind of mothering than I've ever seen anyone do. I don't know, I didn't grow up having moms that used wheelchairs. And so we're, you know, we're figuring out most things from scratch. And it's pretty trippy.

Adam: Yeah, I mean, I think the common ground that you have with every parent out there is that with your first one, everyone is just figuring it out. So, you know, there are lots of books and there are lots of things but at the end of the day, like, it comes down to you and your kid and your partner, if there's a partner involved, just trying to sort it out and just figuring each other out.

Rebekah: You're trying so hard to sort it out.

Adam: But then, like you said, in the midst of that, Micah was diagnosed with cancer and dealing with that. And so first of all, how's Micah doing? Everybody wants to know.

Rebekah: Yes! Thank you for asking, because I keep getting emails from people who are like, oh, how's Micah? I'm like, oh, shoot. I don't have...that's such an awful cliffhanger for the book. Micah is doing. Wow. Micah, let's see. He's just rounding his, like, one year, check in and, you know, so far the cancer has not come back. His recovery has been a little more brutal, and in unexpected ways. You know, we didn't totally expect exactly how this recovery would go. But, I think the part about cancer not coming back is really the bottom line that matters the most. And so far, we're really grateful that it hasn’t

Adam: Yeah. Reading about that confluence of events—baby, Micah has cancer—I wondered...maybe this is not a thing—but I wondered if you had any sort of a shift in perspective, like, "Oh, I am now the caretaker." Like, I'm now the one that is required, expected to take care of these other people in my life.

Rebekah: Yeah, I definitely moved in and out of that, when I was pregnant. It was sort of a strange thing with Micah and me. Like, his treatment and my pregnancy were like, stacked on each other like mirrors. Because his treatment was supposed to be nine months long, and obviously, nine month pregnancy, and we would sort of morph to the other person's...like, when I was really sick, Micah seemed to be doing better, and he was with me. And then he would get really sick, and I would be doing better, and I would take care of him. It was really pretty miraculous—I'm gonna use that word—to watch. It also might have just been like, our body's sending messages to each other saying, like, okay, it's your turn...no, it's your turn. But you know, one thing that really did stand out to me, throughout the whole thing was, you know, we go back to that idea of people being symbols. You know, people would see my body and they would think "sick" or "disabled" or "frail." And they would see Micah's body and say, "healthy" and "strong." And, you know, even so much so that, like, when I would go with him to the cancer center. And people would look at me and say, "Can I check you in?" And I'm like, "This one. He's the one." Yeah. And so there was this way of realizing that, and then at the same time, my pregnancy was pretty normal. You know, like, everybody...I was high risk, and everybody was paying really close attention to me, but I Otto and I were pretty much fine the whole time, in a way that I think just really messes with our concept of healthy and not healthy. To go back to that continuum, you know, that's always shifting over time and that bodies are complicated, and there are ways that my body is weaker than Micah's. But there are ways that my body has been incredibly strong. And I was able to witness that with my pregnancy and birth of Otto in a way that was pretty incredible for me just to live through the larger scope of my life. I say that. Definitely would choose to pass on that situation, if we could have, you know, like, yeah, every time.

Adam: Keep the pregnancy, lose the cancer.

Rebekah: Yeah, that's right. That's right. Thank you for clarifying. That’s exactly what I mean!

Adam: The other question I had about that is, because you still have, you know, family, friends, all those sorts of things...as Micah was going through his...got his diagnosis, was going through his treatment, I'm sure that you had a lot of people, you know, saying, "Hey, we're gonna pray for him. We're gonna pray for healing." And, like, did that dredge up any of those old memories? How did that hit you?

Rebekah: Yeah, that's such a good question. Um, oh, gosh, I almost, like, wanna pull Micah in here.

Adam: Go for it!

Rebekah: Hey Micah, help me answer this question.

Micah: Sure.

Rebekah: Did you hear the question

Micah: I…was not paying close…

Rebekah: That’s OK.

Adam: What? You don’t listen in closely on all of her Zoom calls?

Micah: Yeah, I wasn’t anticipating it.

Rebekah: We're talking about your cancer. And just the, you know, both Micah's family and my family are strong faith, prayer, committed to that perspective and faith system. And so when we brought your diagnosis to both of our families, there was a ton of surrounding us in prayer and like, specifically, like, on your side of the family, people praying for your healing.

Adam: Yeah, like, like miraculous. Yeah, yeah.

Micah: Yeah, my....man...Steven, my older brother, at the time, was a pastor at a pretty large church, and he would tell me that, like, people were praying for me. Because he was like, they would do the thing with all the pastors, like once a week, like getting together, praying over prayer requests. And I think that I was just kind of like always in that rotation. And they are like one of those churches where they believe in, like, miraculous results from prayer.

Rebekah: Yeah. So how did that like, help me remember? And I want to know what you would say, like, how did that feel?

Micah: I don’t think it bothered me, knowing that. You know, I think that we started to kind of joke about, beyond our families, like, praying for us—like, actually praying for us—is a lot of, we had to, like, break that news to a lot of different people at different times, so they knew what was going on with us. And it was kind of surprising how many of them would sort of round out that conversation by telling me that they would pray for me, you know, sort of, almost like a nervous tic.

Rebekah: What else do you say?

Micah: Like, I don’t know how to finish this conversation. Let's tell you that I'm going to pray for you.

Rebekah: Yes, yes. Because the alternative is, “I'll be thinking about you.”

Micah: I think another thing about that was that I started to kind of appreciate when people would just say that they were thinking about me. Yeah, because that, I mean, to me, like, "I'll be praying for you," most of the time, that just means I'll be thinking about you and that means something to people.

Adam: Right! It just means I’m ending the conversation now.

Micah: Yeah. Like, you're in my thoughts. And I think that I started to appreciate that more because I didn't have to go through that extra step of sort of saying, like, you're saying this, but…

Rebekah: It felt really, like, honest and forthright, I guess.

Micah: Yeah. Overall, I mean, I think some of the people who said they were gonna pray for me probably did.

Rebekah: Yeah. Well, and I think I also felt like, I think that there was a feeling for me that was like, sure! Do it!

Adam: You know what? Can't hurt, right? I have a friend that says…he’s a pastor friend of mine…he says, “I don't believe in an interventionist God. But sometimes I pray for people just in case.”

Rebekah: I’m gonna be…yeah, throw it up there!

Adam: Exactly. Micah, I'm curious if you experience any level of what Rebekah talked about, about being a symbol, and sort of being an object for people to sort of, like, rally around and have faith and pray and all that kind of stuff?

Micah: I think that that probably would have been more likely to happen if we had been like, attending a church, maybe, like, being surrounded by that.

Adam: Right, like, "Come on up, Micah. We're gonna put our hands on you and pray." Like, excuse me, I didn't ask for that.

Micah: Yeah.

Rebekah: That's a really interesting thing to think about, though, because we haven't talked about this, Adam, but like, one of the things that happens a lot with visibly disabled people, and happened with me all the time was, like, people stopping me...strangers stopping me in places and asking if they can pray for my healing. Yeah, I wonder what that would have felt like for you to have people pray for your healing?

Micah: Well, I think, you know, just based on my personality being the center of attention on any level for any reason would have been pretty brutal.

Rebekah: Yeah, I think but like, for me, growing up, I...or even later, I mean, all throughout life, when people do that, it's like, such an exercise. It's so clearly an exercise for them. Like, I know what this is. I know how this is gonna go. I know what's gonna happen at the end of this. And I…

Adam: But it’s a violation, though, right?

Rebekah: Oh my goodness. Yes, I definitely have felt...violated is the word, and I think for a long time, I felt like that was such a strong language. You know, I felt almost like guilty saying, or, like I was being dramatic by saying that, but yeah, I've definitely had experiences where at the end of it, it felt like something was done to me. I need to go and, like…

Adam: Without your consent.

Rebekah: Yeah. Yeah. Like, it can feel really gross. And especially...there's so many parts of it that feel gross, but when you're in the middle of feeling good and fine, and I don't know, for lack of a better word, "normal," and you're going about your day, to be called into that like, "Oh, no, there's something wrong here that's supposed to be righted." But God is, you know, like…

Adam: “Hey, you’re broken! Let’s try to fix you.”

Rebekah: No one else in this room is broken. It's just me. I'm the one, right?

Adam: Turn it back on them. "Why don't I pray for you, you seem kind of messed up." There's so much we could talk about, like, just as we as we talk, I think about, you know, the parts of the book where you write about sexism and misogyny and those conversations with other women and how they played out in in your life. So if you want to learn more about that, you've got to read the book, sorry, just go get the book, buy it, read it, it's good stuff. But as we as we wrap up here, obviously, there's a lot that you poured into the book, and then you've had this this wild ride of a, you know, the past year, 18 months. What do you want people to take away from this conversation?

Rebekah: At the very least, I know that your listeners—a lot of them—most of them?—have a relationship with the church in some capacity, right? Grew up in the church, maybe.

Adam: Sometimes a very complicated relationship.

Rebekah: Yes. Yeah. I think that for those of us that grew up in the church, we really have been given a pretty small swath of narrative to think about disability, and like, what that experience can be. It shows up, like, in songs and in sermons, and we know how that story goes, usually, right? The broken one that Jesus came to heal. But I guess I would hope that this conversation would just sort of crack the door open a little bit for us to think about disability and that experience as being just as broad and dynamic and rambling as any human life. And just open up a little bit of capacity to start thinking about that differently. Maybe reading some books. I don't know, just start thinking about that experience as more than just that tiny little box most of us have been handed.

Adam: Yeah, yeah. I think of the story of the blind man, and the religious leaders of that time, you know, 2000 years ago, ask Jesus, like, what sin has this man committed? Or have his parents committed? And that is the the narrative, like you said earlier, like, maybe not as explicit now as it has been other times in the past, but certainly there's, within certain faith communities and theological structures, there's this idea that, well, if you have enough faith, then good things happen. And if you don't have enough faith, then bad things happen. So if a bad thing happened, you know, you must have not had enough faith. And, I think you're right, I think we have to get away from that. And we have to recognize as we're thinking about disability on these continuums, that, you know, at some level, we're all that that blind man or that, you know, whatever. Like we have bodies that that are enabled differently. And that change over time, like you say, in time and space. And I think for our listeners who are, a lot of us, in the process of deconstructing and sort of decomposing and recomposing our faith and the way that we view life and perspective, different perspectives. This has to be part of that conversation. It has to be an area in which we are actively informing ourselves. And I think your book is a great starting point. It's not academic, even though you are an academic. It's not scary. It's a really well-written memoir. And I think you are incredibly vulnerable in it. You're incredibly vulnerable in the ways that you've had to challenge yourself in the way that you view disability, which sort of gives the rest of us a little bit of permission to be challenged as well. And to not feel like we're being preached at but just like we're just all in on this journey together and figuring this out together. And so I'm really appreciative of that. The book is Sitting Pretty. It's available everywhere, so people can run out and grab that. If you want to do the ebook. If you want to do the book in print, go to your local bookstore, mask up, call ahead, whatever, but support your local bookstores. That's always important. And you can check out more information about Rebekah at rebekahtaussig.com, and we are just incredibly grateful, Rebekah, to have had you here as part of The Ocean.

Rebekah: I'm so glad you invited me. I really...like, this conversation meant a lot to me. I thank you so much for creating the safe space to have it.

Adam: Thanks for coming and thanks to Micah for his impromptu joining in.

Rebekah: Sorry, everyone!

Adam: Not sorry! Not sorry. We got we got two for one tonight.

Rebekah: Sorry, not sorry.

Adam: Alright. Thank you so much.

Rebekah: Thank you!

Adam: Once again, it was so great to have Rebekah on the podcast. I would encourage you to pick up her book and really begin to think deeply and often about how ableism shows up in your life and in the lives of those around you.

Until next week, I'm Adam Mosley and that's all I've got.

[THEME MUSIC]

The Ocean Podcast is produced and written by me, Adam Mosley, and recorded in Athens, Georgia. The theme music was composed by Irina Kakhiani. And the opening voiceover is by Rachael West.

This podcast is copyright 2021 by Adam Mosley. For reproduction, interviews, or bookings, email request@theoceanpodcast.com