CIIS Public Programs Podcast

transcript

[Cheerful theme music begins] 
 
This is the CIIS Public Programs Podcast, featuring talks and conversations recorded live by the Public Programs department of California Institute of Integral Studies, a non-profit university located in San Francisco on unceded Ramaytush Ohlone Land. 
 

In this episode, self-proclaimed queer, Black, biracial Glamputee Alex Locust joins writer, teacher, and creator of the instagram account @sitting_pretty, Rebekah Taussig for a conversation about her book, also titled Sitting Pretty, as well as her life and her work. Disability affects all of us, directly or indirectly, at one point or another. Rebekah and Alex challenge us to work together to build a more inclusive world. 
 

This episode was recorded during a live online event on July 22nd, 2021. A transcript is available at ciispod.com. To find out more about CIIS and public programs like this one, visit our website ciis.edu and connect with us on social media @ciispubprograms. 

[Theme music concludes] 
 

Alex: Hi, Rebekah. 

Rebekah: Hi, Alex. 

Alex: Well, I am so excited to be in conversation with you tonight, after reading your book, you know, seeing your platform. I thought maybe before we get into the juicy stuff, you know, I know sometimes when my heart's racing, kind of doing the easy bits first. So, I was thinking I could invite you to share your personal pronouns if you're comfortable and help model some access features or to offering an audio description of like the beautiful landscape that you're coming- zooming in to us from and then just naming any access needs that you might have so that tonight can be accessible for you.  

Rebekah: Let’s do it. Okay, so I use she/her pronouns, I am coming to you in my study. So, there is a wall of books to my left and kind of stacking up and creeping along the walls. We have an orange couch in the background and there's two cats kind of curled up in the corner over here and some more books and plants going on in the background. I'm a white woman wearing a red t-shirt with little eyeballs on it, and I've got some bangs and pink headphones on, not headphones. Headphones? Headphones. Yes. And access needs. I love that question. And I'm trying to think of what that would be tonight. I'll just let you know that I am getting over a cold and it's not a covid anything, but it is a cold that has me- sometimes I have a little bit of a cough so I'll just warn us that I might have to pause for my hydration breaks, but that is where I’m at tonight. Alex, what about you?  

Alex: Fabulous, thank you. My name is Alex. I use he/she/they, I'm open to all pronouns. In terms of an audio description for me, I'm reporting from my pink paradise, very pastel pink. I've got kind of a little camouflage moment going on. Long, black, curly mane. I'm a light-skinned Black bi-racial person. Got some, some nails, glasses, mustache. And access needs for me: I'm in a cozy chair, got some pillows. I got my water, I'm all set. I wanted to offer two quick things too and wanted to see if you wanted to add anything else, just before we jump in. I think in the beginning of your book, you offered this right? But like I think it's always helpful to name that disability is not a monolith, right? We're speaking from our personal experiences, we’re not ambassadors in any regard. So, I just like to, kind of like, couch that so that you can speak freely so that I can speak freely. And people understand, we're not speaking universally. And then I also wanted to invite you, you know, to just really feel free to like decline, reframe, pivot any questions that I ask. 

Rebekah: Alex, I’m already loving this conversation with you so much! [Alex: Yay!] Yes, thank you for starting us off with that too because I feel that, I feel that with me, every time I speak, every time I write, like, I am completely talking from this tiny narrow swath of my experience. And, and I think often particularly with some unrepresented identities, like disability, that so often it can feel or like we are speaking for so many people or as if our experiences are somehow blanketed across and I know that mine are so particular and I'm, I can really speak to those and I’ll do my best to be as specific with my particular experience, but that's kind of what I can offer. So, I love starting there. Thank you for that.  

Alex: Oh, absolutely, I think it provides that like, freedom to really speak authentically without the pressure of like, saying the right thing as, you know, this, this, this representative and so maybe with that right in the particular, since I’m so excited to like get to know more of the particulars of you beyond just, like, loving the book that you've written. I'm curious if you wanted to like maybe just introduce yourself to the audience a little bit more, beyond your bio in your own words and then just to give you an- if you have any like hope or intention for our conversation tonight. 

Rebekah: I love that. Okay. Alright, so beyond my bio. Yeah, I wrote this book and then like all of this life happened afterwards. So, I have this book out in the world that was born from a lifetime of very particular experiences and I grew up disabled, paralyzed, used a wheelchair to get around from the time I was six but I didn't really have language to- or community to really dig into or describe that experience or explore what that meant to me growing up.  

And so I was in graduate school, I was like late 20s, when I found disability studies as a framework, and I found community and I found language. And so, the book is really born from that experience, right? Like a couple of decades of living in this body and not knowing quite what to make of it, or how to think about it, or what words to use to describe my experiences feeling very alone in that experience. And then suddenly well into my adulthood, kind of finding words and community and people that helped me begin to reflect on all of these memories and all of these stories I grew up hearing and, and kind of rethink kind of my own story and who I was in the world, and who I could be and what all of this might mean.  

And so, the book came out of that. I went online to Instagram to begin doing some of that work and and and capturing some of my experience with attempting to capture it with words in that tiny space and the book evolved from that, you know, when I sort of reached the edges of that space and kind of felt myself hampered and and hemmed in by the, I think it's like 2200 characters, you know? Not that I've had to like know that. [both laugh] 

But yeah, so the book evolved and came about from that space and, and then it was like less than 24 hours after I submitted the final manuscript that I found out I was pregnant, which was a really big surprise to me, and kind of changed things for me. And then, and then a week later it's like the next Tuesday, we found out my partner had cancer and then, you know, all of us kind of entered into a new world as Covid came to be a real thing and we responded to that. And so, I feel like so much has changed since the book came out too and I am living in that space very much right now, my son is 14 months old now and I feel like he's been intense and passionate and busy from like the second day he was alive but like every day is more of that, like, I don't know where this is going like how much more intense and busy can we get? I’m not sure. He's a lot and a lot of, a lot of good and funny and time-consuming and exhausting and all of that.  

Also, I feel like I threw out my husband's diagnosis, my partner, Micah’s diagnosis of cancer. And I also would like to say that he's doing well, he just, this week, marked his one and a half years of scans and blood work coming back showing no detection of cancer. So, I also would like to mention that. But yeah, I think that's a little bit about me beyond the bio, to kind of color in and add some shading to that. Yeah, life feels very different for me right now than it did when I was writing the book. And I feel like in some ways I'm sort of back at the beginning of like searching for language again, but yeah, that's a bit about, that's a bit of where I am right now.  

Alex: Yeah. I appreciate you. I love you saying adding some color, some texture, right? Some richness beyond the bio and I, you touched on a lot of things that, you know, I've got some questions that I’ll kind of be pulling from, but I really want to, something that resonated with me and what you shared in there was kind of that grad school experience, you know. I was born with a disability, you know, I'm in like a grad counseling program. I’m like 24 and I learned about the 504 protest and like had not heard about this like historic sit-in that disabled people, you know, facilitated and manifested and I just wonder, you know, you're talking about now, feeling like you're kind of searching for language again, or is like a that cycle might be starting over for you and I'm just curious, like, what was that feeling like when you found that language, when you found that community, when it was just kind of like that “aha”, right. It's probably a lot more than just an “aha” in that moment for you in grad school. 

Rebekah: Yes. And I like, I want to hear more about what that's been like for you because I like, I got goosebumps listening to you talk about that. Just remembering that moment. I mean, I wrote about this a little bit in the book, but I distinctly remember the very first piece of disabilities studies like literature that I read; I was like in my subsidized apartment, the ground floor, in my like really tacky velvet green chair. And I was like so burnt out on grad school like I don't know how that's been for you but just like, just exhausted by the relentless labor of- a lot of it, trying to prove myself every day, you know, like trying to prove that I belonged there, trying to prove that I knew everything, right? Because that makes sense as a student, you're a student. Trying to, you know, like scramble to pretend like I got every reference of like, literary reference and scholarship reference and just exhausted by the whole thing. And I like, I had told my therapist like that day that I was going to quit graduate school. I was going to be done. I was going to do something else. I was also really tired of being really poor. I'd been poor for a long time. You don't make a lot of money as a graduate student. And so, I was just like tired of scrambling to pay for things. I was just exhausted by the whole thing and it didn't feel like what I was putting into it was becoming anything that meant something to me and a friend of mine sent me this article by Leonard Davis and it wasn't anything we were reading in the class, he just thought, maybe it would be interesting to me and the title of it was something like Disability, the Missing Term in the Race, Class, Gender Triad, I think? Something like that.  

And I’d never even seen ‘disability’ in the title of a piece of scholarship, [Alex: Mmm.] like, just even like seeing that word in a space that wasn't medical. It was like the validation that this was like something worth thinking about, was even just that was really jarring to me. And then just going on and reading, like, for the first time ever looking at the social construction of the idea of disability. And the notion of normal and like, tracing that back like into the lexicon of like, when did this word, as we know it, appear and what is the context of that? And I had never, ever even considered that as a way of, I'd never even thought about the history of how these things would come to be arranged.  

And so, yeah, as I sat in my chair and just read that article, it felt like I think the way I've described it and it sounds dramatic, but it feels very true, is it felt like the physics of the universe were shifting around me. [Alex: Mhm.] Like, like this is a different world than I thought it was. And there's something about this, that makes so much more sense to me, like these suspicions that I had, there's a way that we can trace them and like there are words we can use to piece this together, where the, the experience I thought I was having, but maybe was the only one who saw it that way, you know, like there’re other people, other. And, and even just hearing the- in that article, I remember, there were just like these tiny snippets, describing stories of people with disabilities and just like the humanness of those stories. And like the recognition I found in that. So that was that one article, right? [Alex laughs] Like one article and my- I'm like changing as a person. [Alex: Totally.] And then and then it was the next wave of that.  

So, I like started reading everything. I like, I feel like another way but like Alison Kafer was someone for me. Reading Alison Kafer was another wave of like “oh they're still, that's like there's so much here and I'm seeing things differently, everything I look at feels different.” And then I think the next wave of that was finding people online and reading their very human stories, reading them wrestle with ideas and think and kind of the contradiction of experience of like what does disability pride mean and how does that show up for me? And you know, like these things that felt so tender and personal to me and seeing other people like the recognition of seeing other people also thinking about that and seeing different ways that they were processing that, like different from me. And yeah, it just, it changed, it absolutely changed the way it felt to be here on Earth. So, I don't- let- that- it sounds dramatic. But I wonder if, I wonder if you recognize any of that or how that's been for you. 

Alex: Oh, yeah, absolutely. I mean, first of all, as a Leo I'm very into drama. [laughing] So... 

Rebekah: Okay, we're on the same page! 

Alex: You’re speaking to the right person. I mean, even the way you're describing it right now. I've never thought about it this way, but it sounds so much like, you know, in like whether it's like a horror movie or a thriller or like something where the whole movie they've been planting Easter eggs that like at the end and then they play that montage where they like piece it all together and they're like, see, the killer was here the whole time. You know? And it's like ableism was here the whole time but we had no idea that that's what it was [Rebekah: Yes!] and it's just an insidious spectre that like lurks and creeps and undermines and like eats away at. But if you don't know its name, you can't banish it. You know, you can't exorcise it out and so yeah, I feel like I hear that in your story.  

I know, for me, it was like first semester of this grad program, I had been working in the psych research lab around chronic illness and disability. So, I was already seeing how psychology and research could like benefit and support disabled communities, which is like wholly different than all of my experiences with like the medical industrial complex prior to that. And yeah, just sitting in that class and watching that video about the 504 protest seeing Judy Heumann, you know, just like shouting at that, you know, elected official and be like, don't tell me, you know, that, you know how we feel. And I just like, I'm like, crying in class and like I don't cry in academia, like, that's not a thing. And it definitely felt like a, I would describe it as like, that kind of like that lightning strike, or like a bell that just can't be unrung. Like, it felt like as close to like a calling of like, okay, wow, I'm following in a lineage of these champions, right? And I didn't know about them. I still know very little about them, but they feel like, you know, ancestors. They feel like people that I owe so much to, right? And it felt like there was literally no turning back. I couldn't unlearn that that that history exists and to like do anything other than situate myself as like in a next generation of people committing to that cause felt like it's like that, I can't, there's nothing else like it like I love you describing like but the physics of my universe like my body chemistry just all like oriented to be like, well, disability justice like that's it, you know, similarly with Sins Invalid. Seeing them perform seeing like queer, Black and brown artists, disabled artists like perform on sexuality and I was like just- totally yeah, rocked my world. 

Rebekah: So good. I love that. I love. And I'm like, I'm like trying not to just like shout while you're talking. Because I know some like “praise hands” for that moment because I feel it too. And I am like I'm so eager. It's like this thing that I want to like I want everyone in on, right. Like like be a part of this field of - know this, have these words because I - I went so long without knowing, right? Like I'm just picturing both of us growing up as like, well, six-year-olds and 10-year-olds and 12-year-olds of just like, not having that. And I'm so hopeful for, for that next generation.  

Alex: Totally. Yeah, and, you know, I mean, reading your book, I just like, I felt that kinship, with, you know, your like tender, you know, precious self with the, you know, the scabby, knees all the bruises, right? Like I was tripping all over the place. Like I felt that, and you know I feel- I felt the way you described that sense of like, isolation and loneliness and otherness with an experience, that is so normal, you know? And, and so now to see you as an adult and like healing right in - in that way and through like, fostering community, cultivating community. I'm just I'm curious like how that feels for you to be in community with other disabled people, you know like we even just like prepping a little bit. We were so excited to like we're two disabled people in conversation. Right? And it's not like the one disabled character in a movie. So, you know what does disability community mean to you? How does that feel to be in connection with other disabled folks? 

Rebekah: I feel like we could talk about just this for the rest of the night. I don't. I mean like, there's just been so many waves of transformation. Like community, I feel like has transformed me or like, or has just kind of swaddled me in that healing that you described. I think…I think like to give one example or one picture of that. So, I was still in graduate school. I found like the literature and I'd like, just begun to sort of connect with a couple of people online, but that was kind of it for my experience of finding. Hmm. That history. Knowing that I was a part of something.  

And so, I went to this symposium - the University of Michigan and it was just for disabled creators, and it was just like, maybe it was, maybe like, 20 people. And it was the first time that I was in a space like that, where I was in a real-life space. Something, you know, we don't have a ton of these days anymore. But at the time, right? 2015, I think it was, we're all in this, this space together all these disabled creators and at the beginning of the week, we would do these…we would do these, I can't remember what they were called. I'm sure there's a term for them, but there it was like, like, intuitive movement, I think, right? And so, we'd just be in this space, and it was just kind of about moving your body however you're comfortable. I think there was sort of like a rhythm or a beat in the background and we just sort of like came into our bodies, felt present with our bodies and allowed them to move in whatever way was comfortable and felt good. And at the beginning of the week, I was so uncomfortable. And I remember, I think, like, for one of the days, I just like, I just like, went into the corner and like basically was just like in the fetal position and I was like, this is what I, this is how my body. This is where I'm at right now. And I guess there was something sort of already happening in me that I felt even like comfortable to do that in itself, in itself. But as the week went on and I was just with these people and kind of like eating lunch with them and like doing whatever kind of creative workshop exercises we were doing and just like coexisting. It was like I think maybe the last day we were there that I realized that I was just crawling. [Alex: Mmm.] I was just like, crawling around in that space in a way that I hadn't since I was maybe five or six years old.  

So, when I guess maybe just to give a little bit of context to that moment, I sort of became paralyzed slowly around the age of three. It's like cancer treatments that were cumulative and happened slowly. And so, at that time, it wasn't like a jarring experience for me that I remember, I just sort of started moving my body differently. I would crawl around the house, crawl up the stairs, crawl down the stairs, you know like face forward like as fast as I could, climb the kitchen cupboards, climb around on the sidewalks. I had a little red trike, I would ride around the neighborhood, hence, the scabby knees. So, I was just sort of comfortable moving however I wanted. I didn't even get a wheelchair until I was in first grade. So, there's this sort of this comfort space. And then very early, I started to realize that that was like not the way I was supposed to move my body. [Alex: Mm..mhm.] Right? And I learned that to sort of keep the disabled movements to a minimum and- and try to move as much as I could the way that I was “supposed to”, right?  

And so, it had been probably at least two decades since I had crawled in front of anyone. And I, and I didn't even realize I was doing it until I looked around with all these people who are also moving their bodies in the ways that, you know, made sense and- and or particular to their embodiment. And it was like this wave of like, recognizing how long it had been since I felt that comfortable. Just like the relief of being able to feel comfortable in my body around people. It was kind of, it was, it was beautiful, and it was kind of heartbreaking to feel like this, the long span of time that it had been. And I wonder if that resonates with you of the- of the thing unique comfort and the relief in my body that I feel when I'm in community with people who understand living in a disabled body or even disabled mind, right? Like the sort of wobbly intersection of body and mind. And I feel like I felt that again recently in a very different way, and I just get- I hope I'm not just rambling about this too much, Alex. [Alex: No, yeah! Yeah.] I want to like I feel like the way to describe it is like in the specific moments and another one that stood out to me was last summer, actually.  

Hannah Sawyerr is a disabled poet. And I connected with her, she also was- went to school at the same university as I did, but at very different times, but she had this idea of running workshops, like creative writing workshops to like just for disabled folks, who wanted to write. And- and I'm a teacher and I'm a writer. And so, I've done tons of workshops, but I had never done a workshop with like just disabled writers. And- and like, within, like, I don't know, 15 minutes of- it was Zoom, right? Like we weren't even in the same space but like, within 15 minutes of that- of that space. It was like, ah, something that feels mag-. I'm gonna like again. Here's my dramatic language, Alex, I know that you'll feel it with me. [Alex: Yes, yes!] It felt like there were sparkles in the room!  Like, it felt like there's something magical happening in just the feeling of being understood, of not having to- like there's so much, I feel like about being disabled in spaces that, I don't know, are unfamiliar or don't make space for that experience, where I think I forget or I lose track of how much I'm expecting to have to explain myself or I'm expecting to be misunderstood. So, so familiar. So automatic. I think that I even, I think that my body is, like, primed for that. And I think that's why when I'm in these other spaces, it feels like a physical relief of like, oh, I don't have to, I don't have to have, like my armor up. I don't have to, in the same way and I don't want to pretend, like it's all utopic like, as if there are ways that, you know, like that could be complicated, of course. But I do think that there's something so unique about- about that understanding and- and that like, really to me, what feels like a really rare kind of recognition. That feels like literally I feel different in my body and there are sparkles in the room. [Alex: Yeah.] I think that there's the term that I can't remember who coined it, but like crip magic, can't remember who coined that term. Hannah uses that all- Hannah Sawyerr, and she could tell you who coined it, but we started using that term a lot during the workshop. Like there's some cryp magic happening here. But yeah, I mean like for you, what happened? How has that felt to you? 

Alex: Yeah, I mean I- I can- I can really relate to that. I'm hearing that, that release, right? That relief. It's like, you get to lower, you know, you get to take off your armor, you get to lower your mask, right? You get to kind of feel that kinship, right? That- that connection. And what I find and I'm hearing this in- in what you're saying. And then you know also I’m curious, like from part of your writing. Like it also allows, I think for an opportunity to go deeper faster, right? Or maybe not deeper faster, but to explore the complexities of our identities. In a way, where like, If I'm interacting with someone that has no experience with disability and I'm like, and I want to talk about our racial experiences. I feel like you're not going to understand that without me having to educate you about disability first, right? Or if I want to explore disability and queerness with another queer person and they're not- have lived experience with disability, then I feel like, a lot- I mean we're kind of, we can talk about queerness, but I feel like maybe you're missing a lens. That’s really important, right? And so, I feel like when you're in a space with disabled folks, in my experience, it feels like it doesn't, like you said, it also doesn't just like absolve things. I've been around disabled people who are harmful or who have internalized ableism, you know, but there's just that opportunity to be like, okay, if we are seeing each other, if we are connected in this way, there's this opportunity to talk about queerness, to talk about womanhood, to talk about fatness, to talk about immigration status, like all of those kind of things in a way that feels rooted in a common like, language or like, shared heart space. I don't know.  

Rebekah: Yeah, that makes a lot of sense, Alex. That- that bit about like go deeper faster resonates with me for sure. I feel like, when I am talking with someone, even someone that I'm close with that I love, right? Like, even- even people and family members, I often do feel like I need to- there's like a part of my experience as a disabled person that I have to, like protect or defend or like I have to- It's almost like I have to present the world as more than black and white than I feel like it is in order to not like, I don’t know, imply something that I don't want to, or even something as simple as I guess. I have Disability Pride on my, on my mind, a lot lately because I guess, this month of July, I think that it's for, I think we're in it. And, and so that's a- that's a complicated thing. And being able to talk about, for me, I think the way that that's shown up is, like, even being able to talk about something like, some of the loss or frustration of disability is a different conversation with people who don't live that. Because as soon as I open that door, I'm like, afraid of what where that's gonna go in your mind, or where you might take that. Or but I feel like if we- if we- if we understand this as a whole life, then we can explore that- the depth and complexity and contradiction of that with a little bit more freedom or ease, and- and now I don't have to be worried that you're going to take that and- and like, move- take it somewhere that I didn't intend the- right? Or like, for- forget about the complexity, forget about the nuance or the 90 different turns of that. And I think sometimes, I can get in my head about that when I'm writing, and I don't know who's going to be reading it. And I think that, I think that I- I think I was grateful to have the space of a whole book to do that, but even- as even in a whole book, I know that there are people, I've seen it in reviews, you know, like, I know that there are people that that pick that up and then and then put it into a box that is smaller than I- I intended for it to be in or that I think it should be in. So, all that to say, yeah I think that the ability to go deeper faster, really resonates with me in my experience for sure.  

Alex: Yeah, you mentioned kind of what- like how people can misinterpret, like your- your storytelling right? Your- your writing and, you know, I love the little like asides of like, you specifically, like I'm talking to you, you know? And I'm also really grateful for you, as you know, like a disabled white woman to be able to both honor your experience. Like, I didn't feel like you shut- like this is your memoir, right? So, you were telling your stories. It didn't feel performative or like you are reaching to be like a savior or like, speak in a way where you're like, I'm an expert in all of these different areas. And it also felt like you, you consistently came back to being like, “and I recognize the power and privilege I hold here. I recognize ways that there are disabled people who are experiencing more marginalization than I am.” And, you know, talking about how white disability studies can be- or the whiteness of disability studies or interrogating white feminism, right? Of missing like an intersectional approach, and I'd love to just hear more about your journey to- to kind of like celebrating intersectional like, Disability Justice, you know? How is that- has it been for you? How's that for other people, where you are kind of advocating for exploring beyond just like, we’re just talking about disability here or yeah? 

Rebekah:  Yeah, yeah, I have to tell you. I'm so glad to hear you describe your experience of my voice that way in the book. Because I don't think there was a page that I wrote that I wasn't just, like acutely aware of that, right? Like, I mean, almost like there were times when I was like, I can't even write this book because like, who am I? Like you said. I'm a white woman. I'm straight. I'm cis. I'm thin. I'm like, all of these privileges that are tangled up in my entire experience in ways that I- It's like, I'm aware of them and I'm also aware of all that I'm not aware of you know, so like how do I even say anything about disability? This, as we've established, like this giant, sprawling, complicated…I don't- like experience even feels like too trite of a word to describe- or too small a word to describe what disability is- to speaking to that experience.  

So, I was thinking about that and almost every page that I wrote. So, it means a lot to me to know that you heard that and my attempt to acknowledge that as much as I could. And you know, like it. So, I'm- I'm aware of it to a certain extent in the book. And then I read Keah Brown's book, The Pretty One, I think, like, a couple of months after my book came out, which is a beautiful book, and everyone should read it. It's funny, it's poignant, it's like full of pop culture. It's so fun and smart. But I got to this chapter in her book. That is all about media representation, and I have a chapter in my book that's all about media representation. And Keah is a Black woman with cerebral palsy who is ambulatory. Like she, I think she uses crutches, but she doesn't use a wheelchair. So, like the spirit, you know, like this- There's this way that I recognize so much of myself in her experience. And then, there's this way that I, it's so different than mine. And I'm reading her chapter on media representation and I- it’s like opening this whole new door for me and thinking about her experience as a Black disabled girl, and the different ways that mean, I mean, like the ways that different media are hitting us, I think there's even a specific show that we both talked about and the different ways- the different things that we see there. And, and the extra layer of what she doesn't see there, represented back to her was like, I had completely missed it and I don't know I, I just bring, I guess I just bring that up to say that even being aware of that, there's also still so much- I know, I'm sure that the next book I read, will also, you know, point out to me like, there's just so much here and there's so much more to look at and consider. And, and so, I, I'm, I'm hoping to continue to understand more and recognize more.  

I think another one that has really hit me recently is- is reading about disabled women talking- Like fat disabled women talking about their experience in medical spaces. [Alex: Mm, yeah.] And- and you know, I feel like I have my own set of what I would call like, medical traumas in that space and then to like go back and think about all of those memories through the lens of like also being a thin, disabled woman and just like having that hit me in different ways and seeing that- seeing how that has been a part of my experience.  

And also, I mean, I think another part of it. Another way- I’m just like vomiting to you all of the different, like intersections that like, I- each way, you know, is like a new one that I'm realizing has shaped my experience. It's just the fact that I am not only visibly disabled, but I think, you know a wheelchair is even like this symbol of disability, right? Like when people think of accessibility, there's a like- that blue icon with the wheel on it. Right? And and I know that even that, even just being a wheelchair user. I don't know. I don't know how much I would call that a privilege, but just like this particular intersection of experience is- is unique. And I- I think that I will continue to unspool that for as long as I'm alive. [Alex: Yeah.] And like, recognizing that, but I think what I came to in the end through the process of like, writing this book and, and knowing like that's why I love the way that you started us off tonight, Alex because like, knowing there is no possible way for me to be able to not only represent disability. That's a giant category. You know like, whatever. 

Alex: Capital D, “Disability.” 

Rebekah: Right? Right? But even like, I knew that I was going to be missing things and they were- like I could point to as much as I could point to, but I knew that I would want to go back and add things, you know like a month later or a year later. And so, I think and that’s humbling, you know like, that's like there is like almost this way of saying like “I know that I'm not going to win at this thing that I want to win at” you know like “this thing that I want to be able to do, I'm not going to do it.” So I think what was important for me in the process of writing that book and a lot of it comes- I think a lot of that came together for me and my thinking when I was writing the chapter on feminist pool party and like that, just even just the intersection of womanhood and disability, was that like the- maybe the best thing I could do in addition to acknowledging and trying to point out as much as I could out away from just my experience, was just provide the most specific vivid capture of the very specific set of intersections that I embody. So, that, that experience was as full and as rich and precise and vivid for anyone that would pick up the book. So that, that there would at least be the experience of entering very deeply into one very specific story. And I think that that is something that I can do, could do. And so, I did try to be able to at least do that. And then say, now go read another, [Alex: Yes, yeah.] you know, like you know. Now go read, you know, something different than this and hopefully one that, like, offers a different way of thinking about it, but the point is, you know, like more- More stories, more voices. And yeah, it was, it was definitely- that is definitely something that I- is with me, and I hope that I'm growing in my ability to point to more voices and bring in the perspective of different intersectionalities of this experience because [audible gesturing, sighing] this is what I've got. 

Alex:  Yeah. Well, I just, I'm so grateful that you- you expanded upon that for yourself and you're just being so vulnerable in that process, I- I think in a moment of candor, like, I'm sharing with my roommate, how, like I just- your book. Just like the, you know, I use the word texture and I feel like it, just you speak to the- the nuances and all these like, little moments that I so related to and just like naming, like, you know, judging a book from a cover, right? I'm like, we are different, right? And I'm like, what am I- how am I going to relate to you as like a cis, straight white woman? And I think I was really surprised how much commonality there was, and I felt really seen. And I also feel like what you did and what I desire from- from white people, from white women, right, where I feel like we see these cases publicly of harm, right? Where white women vote for Trump, right? White women, you know, assault Black people, right? I don't know if you've ever read When White Women Cry, White Woman's Tears: Oppressing Women of Color, it's like a really great essay.  

Rebekah: Writing it down. 

Alex: Yes, to see you name all of these intersectional facets of disability, and then in that feminists pool party, like that conversation with your friend, talking about, like you've been handed this microphone, right? And who can you bring with you? It's like, that's what- that's what we need from white people, right? Is to not bathe in that, like, guilt or the, like shame of having privilege just like, okay, you have the privilege to like, tell a very beautiful story, to share your memoir. And then, who are you bringing along? Like, who are you lifting while you climb? How are you extending your platform? And so, I just, I think that's really exciting to see you, lift up Imani and Keah and Alice, right? And all of these people that are doing similar work in different ways and offering more marginalized perspectives, and I think you said something towards the end that I also wanted to make sure that we had time to talk about too. Within that, you mentioned disability and womanhood? And as a cis man, right? That's not my experience and I'd love to hear where you're at. You know. You mentioned being a new mom, right? Like that's a different part of the story that's not in the memoir. So where are you at in that journey right now? 

Rebekah:  Thank you for asking. I, yeah, good question, you know. I was just, I was just saying to Micah, my partner Micah recently. There's that part in the book where- so when I, when I wrote the book and anyone who read it or will read it, I’m really candid about not being a mom when I- in the book and like, and in that I don't know if I'll ever be a mom and I talked about like, what it's like to be around women who are moms and to feel very outside of that. And when I became pregnant and then had Otto, our baby, I think that I sort of expected that some of that would be alleviated. I think- I think I sort of thought, like, I don't know. I never said this to myself, but I think there was a part of my brain that was like, “maybe I will belong more to this club” and it was like yesterday where I said to Micah, I was like, I think being a disabled mom in some ways makes me feel even more distant from this like, I don't know, imaginary, I think it is largely imaginary, but like very real which is a funny contradiction- this imaginary, very real, like space of womanhood. Like “certified,” “verified” like, womanhood and motherhood. I'm like, what- what we care about as mothers. What we worry about as “mothers,” I'm doing a lot of air quotes again. Like, what it means to be a mother. I feel very outside of that as a disabled mom. And I think when we were talking earlier about, like, when I- where I'm still searching for language and kind of feeling like I'm at square one again is very much about being a disabled mom.  

It has been- it has been so hard, Alex, to adjust to being a mom. And I feel like I am in some ways, I have been thrown like, right back at square one with a lot of things that I thought that I'd worked out for myself as just disabled woman and suddenly, it's like, I didn't learn anything. It's like, I didn't, you know, like I feel like I'm thrown back into this space of like, well, I think a lot of internalized ableism is coming up. I think that that’s how we would describe it. In these very simple moments. Like it started happening very early. Like again, like day two of Otto’s life. He- he just cried all the time. He was just one of those babies that was in a perpetual state of suffering. And, and Micah, my partner was like the only one who could soothe him, right? And so, there's so much happening here where I'm like, "well I'm the mom, you know, like what's wrong with me as a mother if I can't soothe my baby?" And also, he would soothe him by bouncing and pacing around the house, which I could not do. And so, there's also like, all of this stuff about like insufficiency as a parent, just, as the disabled one, and can I even be a parent to this baby if I can't soothe him and my- I literally can't do the things that he needs me to do. And also, side note why is my baby ableist? Like what is that? I thought that he would, you know- like, I thought he would know that, like, I'm his mom and that I am the- you know.  

Anyways so that was like day two and there's been different iterations of that that have continued in my dynamic with Otto. And I think that ultimately like a couple of months ago, I came to this place of like I don't even want to think of myself as his mom, I need, for right now, I like- I need to like, get rid of that language and that framework and that term. We're starting from square one, kid. Like, I'm this person with you who is going to be with you for the long haul, and who are we to each other, and, and where are we in this moment right now, right? And like, so I think one of those mornings when I was in that space, we were outside, and he had found like these dried crumpled leaves in the backyard. And I was, I just like, picked one of them up by its dry little stem, and I was just like, trying to show him how to kind of twirl it. It was like, this is where we're at right now. Like you and me, here's a leaf. Look at this, isn't this amazing? And he started to do it, he started to twirl this little leaf, and in this moment, I was like, oh, okay, like, we can, we can do this together, like we can be together. And so, I don't know, that's a very roundabout way to say in that intersection-- intersection of disability and womanhood, I think that this is a gnarly one for me, and, and I by no mean thought that I had figured it out or sorted it out in that chapter in the book. But I think I thought I'd gotten at least a little bit of a grip on it. It was one of the hardest chapters for me to write, as I think I'm candid about in the chapter. Like, it was very tangled and wobbly for me. And I think that becoming a mom has only affirmed to me that that is a-- that is a sticky spot for me. I think I grew up in a time and a space where the role of mother and, like, the expect- and like tied to womanhood, that womanhood is motherhood in some ways. I think that that was sort of how the- narrative that was ingrained in me from before I even had memories.  

I mean, like, there are videos of me from 1988 - grainy VHS videos of me - like, nursing my baby dolls, like this was just like this thing. And so, it's really, it's a fraught space for me. It's continued to be fraught. But I feel like I'm hopefully the-- at the very least I'm like learning to breathe through it and ride the waves and Otto and I can find our own, create our own subversive, you know, like space together. So yeah, I'm still searching for words, though. I still, you know, like I'm, I'm, I'm going to forever be working this one out, I think. But, that's where we're at. 

Alex:  Yeah, I mean, what I'm hearing is, you know, I'm as I mentioned earlier like my soup is like disability and queerness, and I always hear this really- I feel like they go hand-in-hand, crutch-in-crutch, right? Around like you're talking about like eschewing a label, right? You're moving away from, like, "I am a mom," which behind that contains all of what that means and more of like "we are connected." I love you. I care for you. I am, you know, and I feel like that's almost like a very queer approach, right? Which helps to alleviate you of all these expectations and pressures and sounds like also just like triggers, right, and trauma around pressure for your body to act a certain way with that, we erase the complexities of motherhood. And so, I just love hearing that frame, I've never heard somebody kind of frame it in that way where it's just like, this isn't about a label, it's about like this is, you know, I just care for this, you know, tiny nugget.  

Rebekah: Yeah. 

Alex: And spin leaves with me. 

Rebekah: Yeah. See, Alex, this is us doing the, like, going deep fast thing. Like, the recognition, I feel like the way that you see that and understand that is really- means a lot to me. So, I feel like I'm really scrambling for ways to describe it. So, the fact that you get that, thank you. 

Alex: Oh, absolutely. And to, to the generative power of disability, right? Like I'm hearing you process something that has offered you a new way of connecting to your child, that I think would benefit anybody, right? Like disability, I think it's so woven throughout your memoir is, like, disability is a generative force. It's, it's magic, it's additive, it's not inherently negative. And so, I think about queer friends, who really struggle with fraught relationships with their biological parents, right? You're my mom, you're my dad. You do not treat me like a mother or a father, right? And straight people in my life are dealing with racist family members, right? We are- you are my aunt, you're my uncle, and I'm feeling really ashamed, right, of how we're related, right? And so even just focusing more on like the value and the depth of connection seems like such a subversion of, like, "you are this, so that means you act this way." Because it's very clear nobody fits into those boxes in the same way, if at all. 

Rebekah: Right. Right. This is so funny that we like keep scrambling for them and, like, looking for them, and trying to fit in them, when it's so punishing, it's so punishing to us. But yeah, that's what we're doing for now. I mean, that's sort of how we've been surviving. Although he did just start saying "mama." So. 

Alex: You're like, "I'm back in." 

Rebekah: So, like, what do we do with that? 

[both laugh] 

Alex: Totally. Well, we just got our five-minute reminder and I really wanted to make sure that I could ask you this question. I have so many that I didn't get to ask. But, you know, we talked about, you know, the preciousness of like your younger self. You know, and like, how isolating and, and challenging it was and lonely, at that time. And you know in therapy now I'm working through like the idea of kind of that like queer crip time travel, right? Like the healing I'm doing now is healing my younger self, and so I wonder for you, is there anything that you would like to offer your younger self? You know, if she was tuning into this. Yeah, what would you want her to hear? Or what would you want to say to her in this moment of sharing your story, your memoir with, with this audience? 

Rebekah: Oh, Alex, now I'm like feeling mushy and soft and, like a little bit- okay. I'm thinking of her. And her hot pink wheelchair covered in smiley face stickers that, like, immediately started peeling and look really janky. What would I say to her? Ugh. I think, I think I would say, like, you have it right there, like you have all of it right there with you, in you. Like, hold on to that, lean into that, sink into that, because I think the impulse is so much to say, like, I need to like, go over there and buy that thing and like, put it on my face and like, put the clothes over, you know, like, obscure and hide and contort and change and- I just see her having everything she needs, more than she needs, like, right within herself. And I know that- where she's headed, I can see that part too, right, like, and I just- I would just say you don't need any of that. You don't need any of it. Sit- sit here with yourself, be with yourself, feel your body. Listen to your body. And you've got it all, we've got it all right there. I don't even know if that makes sense to anyone else. But that's what I would say to her. 

Alex: It makes sense to me. It feels like that, you know, disability justice principle of wholeness. You know, you've got everything you need, your body isn't missing any- your body, mind isn't missing anything, and yeah, and I love that as a- as a message. So, I appreciate you sharing that. 

Rebekah: Thank you for asking that. 

Alex: Yeah, of course. And I'll just close with a Patty Berne quote, because Patty is like, just a patron saint, a beacon for me. She-in Skin, Tooth, and Bone, kind of a disability justice primer. She says “All bodies are unique and essential. All bodies are whole. All bodies have strengths and needs that must be met. We are powerful, not despite the complexities of our bodies, but because of them. We move together with no body left behind. This is disability justice.”  

Rebekah: Yes! Yes! 

Alex: Yes! So beautiful! Thank you so much for sharing this space with me tonight. 

Rebekah: Thank you. I, dare I say there are sparkles in the room. [Alex laughs] Like thank you so much. This has been such a joy for me and I'm going to, I'm just going to love continuing to follow you and seeing what you're up to in the world. And I hope we get to connect many times more in the future because this is just such a joy. 

Alex: Yes, me too. Glamputee and Sitting Pretty. It's got, it rhymes, there’s a ring to it. You know? So yes. Thank you for your book. Thank you for your writing. Thank you for all of the community building that you're doing. And yeah, I can't wait to see what's next for you as well. 

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Thank you for listening to the CIIS Public Programs Podcast. Our talks and conversations are presented live in San Francisco, California. We recognize that our university’s building in San Francisco occupies traditional, unceded Ramaytush Ohlone lands. If you are interested in learning more about native lands, languages, and territories, the website native-land.ca is a helpful resource for you to learn about and acknowledge the Indigenous land where you live. 
 
Podcast production is supervised by Kirstin Van Cleef at CIIS Public Programs. Audio production is supervised by Lyle Barrere at Desired Effect. The CIIS Public Programs team includes Kyle DeMedio, Alex Elliott, Emlyn Guiney, Jason McArthur, and Patty Pforte. If you liked what you heard, please subscribe wherever you find podcasts, visit our website ciis.edu, and connect with us on social media @ciispubprograms. 
 
CIIS Public Programs commits to use our in-person and online platforms to uplift the stories and teachings of Black, Indigenous, and other people of color; those in the LGBTQIA+ community; and all those whose lives emerge from the intersections of multiple identities.  

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