Rebekah Taussig
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Rebekah Taussig is a Kansas City writer and teacher with her doctorate in Creative Nonfiction and Disability Studies. She has led workshops at the University of Michigan, Davidson College, and Yale University on disability representation, identity, and community. Her work appears in publications from TIME to Design*Sponge. Released by HarperOne in August 2020, her memoir in essays, Sitting Pretty: The View from My Ordinary Resilient Disabled Body provides a nuanced portrait of a body that looks and moves differently than most. She also runs the Instagram platform @sitting_pretty, where she crafts “mini-memoirs” to contribute nuance to the collective narratives being told about disability.
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S01E19 Rebekah Taussig.mp3 - powered by Happy Scribe
Welcome to the Enabled Disabled podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called PFG. My journey has been about self acceptance, persistence and adaptation. On the show, we'll explore how people experience disability. The stories we tell ourselves can both enable and disable our vulnerability is the foundation for strength and why people with disabilities can contribute more than we imagined. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.
Rebecca Tausig is a best selling author, writer, teacher and disability advocate. Ever since I spoke with Rebecca and B.J. Miller, UNFPA's podcast, I was looking forward to having her on enable disabled. Her book, Sitting Pretty, was not only a joy to read, but I wanted to ask her more about her experience teaching high school kids about disability and how she eventually got through to them. We also had a great conversation about herbalism and her fantastic piece in Time magazine, which she dived into love and suffering during the uncertainty of the pandemic.
I love Rebekah's thoughtfulness, open mindedness and ability to see vulnerability as a source of her strength. If you're enjoying the show and want to help us, the best thing you can do is please share the podcast with one other person you think will enjoy it. Thank you so much. Hope you enjoy the episode with Rebecca.
Rebecca, thank you so much for being on the show. It's such an honor to have you here.
Oh, it's an honor to be here. Thank you for inviting me.
You're welcome. You've been a very, very busy person, but we're going to get into that. But I would like to start out really diving a little bit more deeply into sitting pretty. The book that you wrote. And what I'm really interested in talking about, at least right now, in the beginning, is your teaching experience. Can you talk about you you started teaching at a high school and you created a class to give the students a sense of what it was like to have a disability, what it was like to move through the world to experience it.
Can you talk a little bit about what that process started like and how you how the students reacted and what the goals were?
Yeah, I, I had just finished my graduate degree and I had just come from this beautiful little bubble of academia where everybody was interested in expanding their minds about the idea of using the experiences of groups of people that are often unrepresented and or misrepresented. And so I was really writing this high of excitement for all that I found in graduate school that I discovered there and wanting to share that with the world. And I got this teaching job right after graduating.
And so I spent the whole summer designing this curriculum with disability studies in mind. And disability studies had totally transformed the world for me. And so I was building all of these assignments and this reading list with the idea that this was going to totally transform the lives of all my students and that they would that they would be thrilled about it. So the class was I don't even remember the original title of I came up with it. Now, I think I might have a syllabus linked on my website somewhere, but I think it was maybe like.
Something about disabled bodies and imagination and literature, and the idea was that we were I would kind of present them with the framework of disability studies and understanding the differences between the models of ways that we can look at bodies either through the social model lens or the medical model lens and introduce the notion of ableism like right out the gate. And the idea was just to give them a lens to look through the world with that they probably had never been handed before and to think about bodies in ways that they'd never been asked to and to rethink how we build our world in light of that.
And so pretty quickly, I just ran straight into a giant brick wall. I think day two, maybe maybe halfway through day one. It was it was pretty, but it was really immediate feedback. And here's the thing. In retrospect, and with a lot more time teaching in that environment, it was my first time teaching high school. I've never I've never taught that age group before. I didn't know anything about that particular community before. I was teaching at an independent high school in Kansas City.
And it was a community that had that has like like a lot of communities, small communities in particular, can have a lot of unspoken rules and expectations. And I knew nothing of that. And so I was showing up with a lot of energy and the naivety of you and and I. There were lots of things that really, honestly had nothing to do with the content that I was teaching that made that difficult, like teaching high schoolers for the first time.
That's a difficult thing to do. It takes a lot of honing to figure out how to design a lesson that engages that that age group. I was a new teacher in the school and I was teaching seniors and the seniors were like ready to disapprove of me because they had been there longer than me and there was all of these other things. But ultimately, I also do believe that the content itself was very difficult for them. And I don't I think that there's several reasons for that, and part of it might be their age and part of it might be their life experience.
But I do. I also think at its core, disability studies and thinking about or changing, shifting and adjusting the way that we think about disability is is really. I think there's a lot of fear, I think people have a lot of fear with that, and I think there's oh, sorry, go ahead and ask a question. I don't mean to interrupt. No, no, no, no. If we if we have two questions, the first question is, so what was your expectation and your transformation when you were a graduate student and you encountered disability studies for the first time?
Like how did that affect you?
As a really good question. And probably I should have started with that because, yeah, that's what I was bringing with me to the classroom. I so I've been disabled since I was three. So as long as I've had memories, I really don't remember. Not not I don't really remember my body walking and. I I was I was raised in a family that didn't make much of that, it wasn't something we fixated on a lot. I was the youngest of six and my disability was just sort of a part of things.
It wasn't analyzed. It wasn't talked about. And I think there's good and bad that comes with that, because while I was sort of just rambling about in my own way and didn't feel that different from my siblings, I also was experiencing life in a way that they didn't. And I didn't really have any anyone to help me think through what that meant or process my feelings around it. And so growing into my adolescence, I really came to adopt a lot of shame around my body.
And and disability to me came with. Language like burdensome, like being a burden and being a problem, and it was something I didn't want to be, so I tried to distance myself from disability, but of course I can't because this is literally the body I live in. So there was a lot of shame in in that part of my identity and existence. I wouldn't have even claimed it as an identity. And so I kind of lived in this world where disability was, of course, a part of everything, because it's the body that I live in.
But it was completely unacknowledged or unexplored. And and there were sort of this cloud of shame around it. And I had kind of traveled through life with that set up. And when I got to graduate school, I was I was my late 20s when I found disability studies that almost three decades into this body and the first piece of literature that I read was Leonard Davis, who is a disability studies scholar. And I read this article is like an introduction to his book, actually one of his books.
And in the article, he kind of introduces this idea that disability is not. An individual person does or let me rephrase that disability is not about. A woman with a cane or a woman with a wheelchair, it's disability is set up from an elaborate set of social systems and history and spaces and contexts. So it's not an individual person in a room. It's something that's much larger that all of us are part of this notion of disability and ability or normal and abnormal like these are notions or concepts that we create and and categories that we create and then build the world around them.
And and so this idea that disability wasn't just like this giant. This giant wait on me individually, everywhere I went, I was just the problem in the room, but instead that there were systems in place that made my body particularly difficult to live in. Right. There were barriers created that made it difficult to get it made it difficult to participate in my community in a wheelchair as opposed to just inherently being born into this body. That is a problem if that makes sense.
So it does. And did he link it? Did he link it as well to the medical model where everyone is classified as non disabled or there are these quote unquote abnormalities, which is how the medical model typically sees the disabled body.
So what he actually proposes in this article is that the thing that we should be examining isn't disability. The thing we should be examining is the concept of normal. We should be we should look at the construction of where this idea of a normal body even came from. And so he kind of takes us through the history, specifically in the 19th century, when things like statistics and eugenics were sort of coming into form where we were sort of evaluating and assessing and measuring bodies to figure out the average of everything.
And then everything that falls off of that tiny little narrow swath in the middle suddenly gets categorized as abnormal or something defective. And looking at I mean, he's it's this is his life. I mean, this is his academic work. So it's full of study and and history and science. And but he really takes you through the journey of looking at the way that that these categorizations were constructed. They did not exist in the same way. There was a time when certain sets of ideas came together and started to organize the world in this way.
And the thing that's really liberating about that is that that means that it doesn't have to be this way, that it could be constructed in other ways. So that that to me, that was what I discovered in graduate school or a part of it, a clumsy recap of what I discovered there. And so that was that was the idea I really wanted to take to these students was how else to to bring the question like how else could we organize things?
How else could we label or structure or what labels really aren't effective and how could we rethink that? And they weren't really excited to do that to my to to my despair. They weren't they didn't seem very invested in wanting to rethink that. And I wonder. How much, I wonder, I feel like I feel like the. And I can torture myself forever on this, like what what could what could I have presented to unlock that in a way that would be exciting?
Because I feel like it should be I feel like that should be a very exciting thing for a teenager to think about. And and maybe in time. Maybe in time. It will be I think it was such a new thought to them, and I wonder if if there are ways that we could make. That conversation more hospitable to teenagers with the shows that they're watching, for example, like if that was not a totally foreign concept to them, but that they had a little bit of an introduction to that way of thinking, it might have been easier.
I don't know. But it was difficult.
Here's an idea. I'm taking a really great writing class right now and one of the. One of the lessons that we were going over is most people when you're writing something or when you're presenting an idea, we we want to lead with the innovation because it's new, because exciting. It's powerful. When what we should actually be doing when that innovation is unfamiliar is that we should be anchoring them into something familiar first, something that can they can relate to something that feels safe and something that feels comfortable.
And then once once they have that anchor, they can start to explore the innovation, which I thought was a really interesting point.
Yeah. And honestly, that's something I learned about teenagers and in general, the longer high school. So this was the class we've been talking about was my first class, my first year. But with I don't think teenagers are unique in this, but they might be they might have a little extra dose of it. But I think one of the things that I learned was that you can get people interested. In rethinking an idea or invested in a topic, when you present it as something that is related to them, like if you make it about the world that they live in, and that's a really simple concept and one that I completely blew past on the front end.
I didn't even consider it. But, yeah, there are ways that that these ideas that we were thinking about are very much a part of the world, their everyday world, and and being able to kind of lay the groundwork of bringing them into that familiar space and then bringing them the tool to rethink that. I think that that that would be one of the ways that I could have done that differently. In retrospect. There's a lot of things I could have done differently, but I think that's a big, important one.
And so in that in that first year. Well, so our second question real quick, and then I want to dove in more deeply into that first year and how you changed the curriculum. But for people who don't know for our audience, what is ableism?
Yeah, well, the really short Oxford English Dictionary definition of it is discrimination against disabled people. Which might feel familiar to people based on their understanding of racism or sexism. I tend to think that it's a little bit more elaborate and sprawling than that. I think, because I think when you hear that definition, you think of individual acts of discrimination and then and then someone else someone has to do is think about how they don't do that. And then so then they have nothing to do with ableism.
Like if I don't discriminate against disabled people when I see them, then as if ableism only has to be like the school bully who is picking on the kid in the wheelchair. And that, of course, would be one example. But it's a lot more pervasive in common than that. So ableism in my mind has much more to do with structuring the whole world around a largely imagined idealized body. So the ways that we structure our physical spaces to the ways that we shape our classrooms, to the ways that we make our laws, and thinking about who do we have in mind when we build and create and design.
And more often than not, it's this imagined idealized body that is thin and has endless abilities and doesn't have any particular names and never ages. And that's the body that often we design within mind and ableism. Or I guess I would say in order to to move beyond ableism or, I don't know, irresistable as we think outside of that and we think about all of the ways that our bodies are different and have different needs and process differently and move differently and perceive differently age differently.
Yeah. Yeah. And and that's the model that we should be designing with in mind. So, yeah, that's that's my more elaborate definition. Immobilism.
I like that. It makes a lot of sense. And I think that's tied into a whole bunch of other things like universal design and. Accessibility and more spaces and being able to participate in the world in and in better ways, but I like the way where does where does language play a part in that?
Yeah. So I was going to say, I think it's really easy for us to imagine physical the ways that that works for physical design. Right. Like from buildings to like tools and technology. But it does apply to so much more than that. And like I'm even thinking about how ableism would show up in something like online dating or just dating in terms of online dating. I just online dating seems to be the way people date nowadays. So if you even think about how ableism would show up in something like dating, we would go back to that idea of who's the center of what we imagine for that.
So if you imagine that the only partner that you could be with are the only viable partner in a romance or that you would go on a date with would be someone who looks and perceives and processes in this very particular way. That would be an example of ableism. Right. But being unable to imagine or accept a romance that with a person that maybe is in a wheelchair or maybe has a limb difference or maybe has autism or hearing impairment or whatever it is.
Right. And so often when we think about how romance is is depicted to us in the story is told around this, how often is disability included in that? Like, really so language. Your question is that language, how does that shopin language are you thinking of things like language like lame or like terms like he was so blind to the truth, like phrases like that. Is that what you saying?
And things like that where I've been reading up on it, this was like a new concept for me too. And I, I think a lot of it is is valid on the linguistic side. I just worry that sometimes it goes too far when you are when you're doing something, you're a writer. So when you're describing something in the literature show book, do you are you cognizant of like you can't use or you shouldn't use the word blind in that way, even if that expression is something that you want that character to say?
Yeah, it's interesting. Yeah, I am mindful of it. I am I am thinking about it. When I pull words together for a sentence. I think you can go online and find whole lists of ablest terms that you're that you're not supposed to use. And the two I named are a couple of them. Lahm is a really common one. But actually, I sometimes forget when I'm just talking to people, and I, I sometimes do use that sometimes, but to me I think with language, I think that the terms that you would find on a list like that, like blinded by the truth or paralyzed in fear or or lame or dumb, I think those the.
Way we've come to use those terms is really only evidence of ableism. It's really only to me I see that as a side effect or a symptom of ableism is something that sort of would like bubble to the surface because the roots are so deep. And that sort of maybe a better metaphor would be like the roots of that are so deep. And then you have kind of believed that sprout off of that all the way down the road. And so to me, if you want to fix ableism, I think trying to trim the leaves on the edge of the tree is seems like a really what's the word inefficient like a little bit of an inefficient way to go about it.
You can continue to prune and prune and prune and try to fix and and clean those leaves up or whatever you do on that on the on that plant. But to me, I think that language will change when our cultural cultural perceptions change and the root of the problem changes when we fundamentally see paralysis or blindness differently, when we understand that experience differently. I think our language would change. So and that's a really long game way to think about it.
And I don't I think that I think that there is something useful about being mindful of language. I'm not saying just ignore it and wait for cultural change and then language will change. I think that there is something a little symbiotic about that. But I think that if all you're doing is obsessing about language and not addressing the root of it, that's not going to solve very much. But I think as we become more mindful of our language and we address the roots of it and kind of do that side by side, I think we can kind of move culturally together.
And I think our language will eventually change. I think we've seen that with a few terms already in language over time. And but I think that you can you can really drive yourself bananas trying to obsess about about language. And I think in writing in particular, I'm very mindful of it. But it's also really deeply embedded in our lexicon and and to to a point where we're like when people say lame, I don't think they're thinking about the root of where that word came from and what it originally meant or any of that.
So all that does I mean, we could talk about that for a while. How do you think about it? How do you think about, um, I'm struggling with it because I've been academically trained graduate school. Right. I went I was studying to be a professor and language is important to me and the words we use better. But I think that I think you're right that we should focus on the root cause more because we can drive ourselves.
Bananas or we can drive ourselves just we can spin in circles if we overanalyze language. So, for example, somebody who has one or somebody says, I'm going to go wash my hands, is that ableism?
So that feel like it's, you know, it never has. I mean, I say I'm going to go wash my hands just because that's the expression. Yeah.
Or I would say, like, I walked over there or like we went for a walk or like that kind of thing, which feels a little different than like a slur. Like lame. Right. Like so I mean, that's when we get into the conversation of language. There's so many different ways that we use these words in so many different histories trailing behind them, I think with wash my hands or go for a walk. I don't know if you felt this way before, but like some people like the thing that makes the thing that makes that an uncomfortable experience is when people get weird about it, when they're like, no, I mean, like role or like people just get really like in there.
And that makes me feel like, oh, shoot, we can relax. It's OK. Don't worry about it. I'm fine with you saying go for a walk. You know, I guess maybe that gets to the place where it's like, do we really want to expend our energy worrying about that or is there other things we can focus on? Before that, and again, like you said, language matters, the words we use matters, so it's not like we want to just say that doesn't matter.
But there's something in between that feels like it's got to be more effective.
Right. There's always a tipping point where it's just like, OK, maybe this is a little we don't need to worry about this. Let's just bring back some freedom of expression isn't the right word, but let's bring back some, I don't know, some playfulness or some context or some let's just focus our energies on tackling the root of the issues, because then once we do that, if we do that correctly, I feel like new words, new expressions, new ways of communicating are going to sprout up from that.
And then and then we're going to be enriched by that rather than like you said it from the leaves.
Yeah, yeah. I like that idea. That actually makes it kind of exciting to think about new expressions. What would that look like? What would that sound like.
That's cool. New names. So. Going back a little bit to the first year class, is there anything else that you think is important to share, like as you struggled through that first year and learning what the students were like and learning what their objections were? Did you feel did you feel any moments where you were, like, super discouraged or you weren't sure what you were going to do year? How did you how did you adapt to to really reach them and to reengage?
I definitely had had discouraging. I think the whole semester was really discouraging. It was it was actually really brutal. And in not just professionally, it felt like. Personally, it was really hard as a single person. And I tried a lot of things that semester, I don't know that anything was really ever a turning point that semester with that group of kids in the next year, I redesigned the class and I think maybe had learned a couple of lessons about trying to make things more applicable to the group, the students themselves.
And I broadened the course design to include other kinds of bodies. So we didn't just look specifically at disability. We also looked at gender expression and the ways that there are norms and expectations placed on bodies and and fitting into a gender. And we also looked at fatness and and talk about language like as soon as you even say that kids are like, are you allowed to say that? But we read Lindy West and Roxann Gay and and looked at the ways that size.
And and actually there's so many interesting ways that gender and fatness kind of correlate with the ways that we categorize and place bodies on a hierarchy with disability as well. So I expanded the class to include those other ways of thinking about bodies. And one of the turning points for that class was pretty early on in the semester, the kids started sharing about their own experiences and in particular they started sharing about their diagnoses with ADHD. There was like four of the kids in that class, that ADHD.
And that was that was really a tipping point, was when we when it became personal for four more people in the room. And to go back to what we were talking about earlier, that's important for learning and I think especially for teenagers, but I think for all of us and in a lot of ways. And so that was the turning point for sure. And that was the last time I taught that class. We sat at that school or anything like it.
And it was a much, much. More, it felt like enriching for everyone experienced, and I think I also protected myself a little bit more. I think I went into the first semester, that first experience, and was not even thinking about the ways that that could hurt me and didn't even try to protect myself from that. And it was just sort of completely exposed to any any and all of their criticisms and resistance and felt better and really personal.
And I think making it about them and less about me and pulling myself back from that was important. I think with teaching, the thing that's tricky is. I think a lot of times we do our best teaching when we genuinely and personally and deeply care about the content that we're teaching. But I think the flip side of that is that it can be really vulnerable to teach something you care about. And inevitably, there will be people in the room that don't care.
I mean, that's just part of it. And so finding the balance between holding back and sharing and bringing forth that thing that you care about while also protecting yourself is just a fine balance. So, yeah, it was a learning experience, to be sure.
But I think the word I think the word vulnerability is so important. Because so many people and this is this ties in beautifully to our next subject, but so many people are so scared to show any kind of vulnerability is a weakness. Right. Especially when you're at a more competitive school, a private school, and those teenagers are already so insecure and going through so much that to show vulnerability is that much more difficult for them because they're processing those things.
And to me, that makes it that much more important to teach. I wish more teachers had come across had taught about that vulnerability and how to how to see it differently, how to reframe it, how to show that it's not. It's not weakness, there's there's so much strength there and there's so much power. If we if we show it, if we accept it and if we share it, yeah, yeah, I think that that would be an invaluable tool for a lot of those kids.
But you're right, depending on the environment. They say there is potentially no line modeling that and in fact, the opposite, right, reinforcing the opposite. And so I think it's I think you're right. It is an incredibly powerful tool.
What is your experience been like with with that being able to express and show that vulnerability? Obviously. Now, I want to talk about your piece in time, because to me, that was. A masterpiece, and it was just it was the pinnacle of expressing that in a powerful way, but I always felt like for me having a very noticeable physical disabilities, that if I wanted to make my way in the world and if I wanted to have relationships and achieve or do anything, that I had to be comfortable with that vulnerability and be open to talking about it, expressing, relating, because I can't hide it.
Like I'm not walking around in some some wizard's cloak where nobody can nobody can see anything. Right. So like I have I have no choice. Did you did you, like, lose your how was your experience the same or different with you as as as a person with a disability. What was your kind of relationship with. Vulnerability and how you express it with people.
Oh, gosh, that's a really good question. I mean, I think on the one hand, you're right that being visibly disabled sort of like. Thrust you into that position like you can't hide, you can't be pushed into that position whether you want to be or not, it's not really your choice. But I don't know. I think that I think that I responded to that as a child and adolescents and young adult by having my likes the story that I would tell you and I had like.
But you don't need to worry because I'm happy this way. And I had my lines that I would give people. So I don't think that I really lean into vulnerability in that way. There is a vulnerability by being out in the world. But I think that I kind of protected myself against having to be vulnerable by having answers and being really positive and really over the top smiling. And so I think I. I really had this idea that in order to be accepted into the into the world, that it was that much more important for me to always be positive and always be smiling.
So I really never showed any of the negative feelings that I had. I did not share those with people. And I think because of that, they became bigger and more powerful for me. So I. Yeah, I don't I don't know that I think it took me a very long time to actually allow myself to be vulnerable, and I think that now I'm more in my writing. I don't know. In some ways, I think I, I, I make myself less vulnerable in like actual social situations in some ways, like I think when I was a teenager, I used to be like, yeah, you can hear me up a flight of stairs and.
Yeah, yeah. Just like right on your back, like across that mountain. No problem. But I'm cool. Like I think I used to to to like put myself in, in vulnerable positions and then pretend like they weren't vulnerable. And I think now like that that piece that you mention, that time piece is kind of like the pinnacle of vulnerability. I am literally sharing the thing that not only is it like Tinder, but it's like fresh, it's ongoing.
This is an anxiety that I have about being in public with my son now. It's not over. It's beginning. It's just beginning. But I, I so I think maybe there's something where I find strength in being vulnerable and writing and empowered to protect myself in my everyday person, that person's social interactions and feel more comfortable knowing where I want to put boundaries up. But I don't know. Sometimes I'm like, why did I write that and share that with the whole world?
Maybe I want to do that. Was that really the best thing to do to get it done? So I don't know. I don't know if if that is similar to you, though. Like, I don't know if that is. I'm not.
No, I think it is and it isn't. I definitely had my lines and positivity was always a part of it, but. When I when I started to come to terms with it, I say in college. I realize that the positivity wasn't just the fact that it was just the better way to be, but I was still open, especially with with close friends, not with everybody, obviously, but with close friends to share. These are my insecurities.
This is what I'm worried about. These are the things that I think I'll never be able to do and maybe I want to do. And and we work through that together, which is why those people are still my friends today, because they were there. They understood, they empathized. And we they helped me. Problem solved.
But I had I was just going to say, it sounds like you just had like a healthy church. So I want my positivity wasn't an act either. It was just that. I think eventually when it felt like it was the only thing I was allowed to be is when that actually became destructive. But I didn't I don't think that I ever figured out, or at least when I was that age, I didn't figure out how to bring people in on the other stuff.
And so I think that that's when it became a problem. And it sounds like you did you you had the people or you knew how to bring the people, how to connect with those people in a way that seems like probably sustained you.
Yeah, those those key relationships absolutely sustain me because and I'm not I wasn't trying to imply that yours was an act, it was just like it's a to me it felt like a mask that I put on. But it was it was an effective one. So I used it. But then when I analyze what the alternative was, I was like, this is a better framework to work in anyways. As long as I still share. I think the the concerns, the insecurities, the difficulties with people who I'm close with or why I was able to bring them in or have them understand.
Probably a topic for another show, because I think I have to give a thought, I don't know, I've just always been. I've just always been very trusting of the people that I'm close with and and that they'll at least. Try to understand, and that's always been enough.
You know, I'm glad it sounds like. Sounds like those people have been important in a good part of your life, and that has continued to that's really special and cool.
But but I still think that in the Time article where you wrote about your husband's health issue and the pandemic and having a new baby and all these things that you were juggling and pressures. It was still like I think of it as a as a both and right, like the picture that you shared of. Hugging your hugging your husband, and he's also holding you and supporting your weight and stretching your legs to me. That right there. Like that says everything, like the article fleshes out that concept in a lot of ways, but that's that's the that was like the aha moment for me.
Like the beauty of it is it's both vulnerability and strength and support and empowering. It was just like this. That that moment to me was was just amazing. So thank you. I'm happy you shared it and to me, it should. Did you feel like it made you stronger? Did you feel like it made you. How did it change you? How did you get it to it?
Right. It also said I knew I should say I was I didn't realize you were talking about that article. I thought you were talking about the article I wrote about parent being a parent to Otto in the pandemic and being seen as a parent. Sorry, sorry, sorry. So let's go back to the other article that might make my comments about it make more sense, because I was talking about something else. But yes, the joy in the tangle of joint pain article.
Yes, sorry I did it. Yeah. That one was that that piece of writing was one of the most difficult wrestling matches I've ever had in writing something. And I don't know how much of it was the topic, how much of it was just like being in the middle of the pandemic and trying to come up with a cohesive line of thought at all while my baby was still like not sleeping, which he still didn't really sleep, but he was really not sleeping at that time.
And so I think there was something really cathartic about going through that wrestling match and trying to figure out like, how does this all fit together? Like, it doesn't it doesn't look like it should. These pieces should not fit. I don't know what to make of this. I don't know how something can be both this and this and this and this when they all seem to contradict. So I do think there was something really cathartic about being able to hold onto all of it.
And I it means a lot to me to hear you talk about that moment with Mike as being an aha moment for you, because I think it was for me, too. I think that picture in my head. And I still really struggle to besides just talking about that moment and what was in it, I still really struggled to talk about what what that is like being held. In your vulnerabilities. And being accepted and loved and but not just like despite but like in that, not despite that, but in that like that moment wouldn't exist unless there was some amount of suffering that brought us there.
And I I hate to say that, like, somehow suffering is like a necessary ingredient for that kind of moment. But I don't know. I just I don't know at all. I know is that that was it was kind of the peak of pain and frustration for me and also at the exact moment like being held and accepted and snuggled at that. And that moment was. It was it was like. The high like reaching a high, like you're going off the top of the roller coaster moment and your stomach gets that like lift and butterfly, like you couldn't get there unless you were falling, I don't know, like something about that.
So thank you. It means a lot to me to hear you talk about that as being sort of a moment for you to know that that article really was really moving to me. I hope I'm going to link it and I hope everybody reads it and has to be interesting and see what they what they have to say. Did you get any interesting feedback or response from that article that was like memorable to you or made you made you happy that you wrote it?
Yeah, I definitely did. Yeah. People I think the main thing was people saying thank you for giving words to this, because I think that that I think that was a lot of the labor of it was like there are all of these messy feelings that we are processing, I think pandemic specific. But I think beyond I think I think even outside of the pandemic, that contradiction of the boats and is a is a troubling one. And I think being able to offer some language for that is something that.
We all need and so it interesting, though, because the the first piece I ever had in time was about kindness and the response to that piece was very different, which was a lot of people trying to reason with me out of my thinking on kindness and and disability. But, yeah, I think like this one, the the tingle of joy and pain, I think most of us just really want to have some kind of language around that contradiction.
And and so that meant a lot to know that people also feel that and also love for language for that, because I know that's a big thing for me.
I think I think that's part of the human experience. And that's one of those, you know, one of those one of those anchors that you gave your twist to and you named it in your way. But it was it doesn't matter who you are, it doesn't matter how successful, how privileged, how quote unquote, so culturally perfect. Everybody everybody suffers. Everybody has those moments of pain, of difficulty, of experiencing those contradictions.
I do think you're right. I think there is something kind of human about that.
And as far as you let's talk let's talk about parenting a little bit, and as you move forward right into that parenting space, then how you want to raise auto and what you want to teach auto and the spaces that you want to you want to hold for him. How do you see things like vulnerability? Like we talked about pain and joy and all these contradictions, like I'm going to try to. Let him and let him experience it for himself right then and disability and.
All these things like how are you how are you playing with that and thinking of what that's going to look like?
Well, it's impossible because I do not want them to ever experience pain, so what are we going to do? I don't know. Can you read all the lessons that come with pain without actually feeling pain ever, please? I don't know, I. Gosh, like trying to say anything coherent about parenting, I feel like I always am blubbering and blustering because it's so much it's it's so much more in every direction than I was prepared for. But.
I do I do hope that when it comes to vulnerability, I, I, I want to. Both I think it's I want to have experiences where he's vulnerable and he's caught and I don't know how to fabricate that for him except just with our family, our little family being able to do that and always be the safe place we can return to. I also want him to be a space where people can be vulnerable and safe with him. And I hope that the way that we're talking about even just caring for the cats is beginning lessons in that right.
Like being safe places for the cats is our first baby steps and thinking about how other people experience the world when we are near. And I. I also want him to to know when to have boundaries and when not to be vulnerable. Think it can be hard to know the difference. And I think he has a mom who tends to just be vulnerable all the time and then regret that 50 percent of the time. And he has a daddy who's who's who's pretty guarded.
So I don't know what that will mean for him. His dad is tends to not put himself into vulnerable situations and his mom does constantly. So I don't know. I would like him to have the balance of that and to get to know that boundaries are good and vulnerability is good. And it's a matter of figuring out when and how and with whom. I don't know, I feel so hopeful and the thing the thing about the thing, one thing about being a parent is having these hopes and desires and also just knowing inevitably that it won't go exactly as we planned and having to feel like how are we going to be OK with that?
I don't know. He's one. I don't know. I know it's a lot, though, and I appreciate you asking because I love to talk about him. But also I feel like of any part of my life, I have like fewer answers than than anything else when we talk about I am now. Let's touch base again in twenty five years.
I hope I hope that we can do that.
OK, let's get on the calendar or we'll do yeah we'll do five year check ins.
I would not be opposed.
Like for me, what I can share. So I have two nieces and a nephew. They're 11 is the oldest. Six is the youngest. And for me, it was it's been an interesting experience to see how they like how they ask questions like, Gustavo, why are you why why are you walk this way? Why do you have a prosthesis? Why do you how come you only have one arm? And it's been like when I was growing up and there were kids who were asking those questions like nonstop and couldn't get over it, it used to really piss me off.
And I used to just make up stories to have them go away with them. It's been different because I can see that they're doing it because they're trying to understand it's not coming from it's coming from a place of curiosity, of I want to understand why Uncle Gus is different from. Mom and dad is exactly uncle, so and it's been it's been great in that respect and we found, you know, we found common ground. I see that they they love to spend time with me.
We play games, we talk, we we do a whole bunch of stuff. We swim. But it's been. To me, it's actually helped with my vulnerability because I feel more comfortable and I see that they love me just the same. They're not it's not a judging thing. It's hey, I just want to understand and this is new to me.
Yeah, I have. I love that. I've had something similar with my nieces and nephews. I have twenty five nieces and nephews. And that ridiculous. That's so silly. I'm the youngest of six and all my siblings have kids. And I think one of the sweetest moments I ever had with nieces. And I have two of my nieces, my sisters, daughters at the time they would have been like four and three. They were really little. And they also do the thing where they ask a lot of questions.
And this one day we were just talking about my legs and they were coloring. And one and then they just started how this transition, but I think that they they started drawing on my legs as we were talking about my legs and they just did these murals on my legs while you were talking. And it was one of the coolest moments, I think, as a disabled person to just have an open conversation and then to have that sort of creative childhood energy and to actually create these art pieces, which is maybe a grandiose way of talking about what the scribbles looks like, but like maybe, maybe not.
Maybe it's even know. But to be able to have that, like, comfort and and a little bit of beauty in that conversation, I don't know what that would be like for Otto, because he is so like with my nieces and nephews, I'm kind of in and out and they'll forget and ask me, like, why can't you walk out of the basement with me again? Like, that kind of thing? I, I wonder what it will be like for him, because he it's so normal for him.
And I wonder what I imagine the questions will have a slightly different bent. I wonder if it would be like, why does her mom walk to the basement. What what is that about. I don't know. I don't know what that will be like for him, but he's really very comfortable with my wheelchair. And it's really interesting how in some ways I think my chair is an extension of me to him. So like, for example, our house is really little and when he hears my wheelchair breaks click or he hears my wheels in front of the bedroom door, you'll be like my you like that sound.
And this tool is so much wrapped up in me and his mom. I don't know. It's interesting to see that unfold and I am curious what it will be like. I think it'll be I think we'll be a lot that's fun about it and. To have that with your your nieces and nephews like the privilege of having that kind of relationship with a child as a disabled person, I think I don't know. It's been beautiful in my life so far.
That kind of like. I don't know, unexamined acceptance and curiosity without restraint is kind of unique, unique bond, it's it's been really refreshing and interesting. But I would guess and I'm probably going to be wrong, but I would guess that. It's going to seem, for lack of a better word, normal, he's going to actually wonder, like kind of like you said, like other people or this is it's going to be it's going to be like a total reframe for him.
Yeah. Which will be fun to watch. I was like, I want to see that. I don't know. I don't know. He's a funny little person, so whatever. I'm sure he will say things that I don't expect about it. But so far it's been a sweet thing for us. He he like when he was really tired, he will just kind of lightly hold his fingers against my will as I roll, just like lightly holds it there.
And and I don't know it just like I've never I've never had shared that kind of intimacy with my real with another person. I think I have that with my wheelchair, but nobody else really does. And I'm seeing that relationship to this tool bond for him in a really personal way. And it's I love it. It's very special.
That's amazing. That's really, really he sees it as a as a part of you. An extension of you.
Yeah. Nobody else really even like my partner. He's around the chair all the time, but Michael wouldn't have that bond with it. He knows how to put it in the car really fast, but he's not tenderly holding his finger on the wheels the way that auto would, so.
My last question for you. Second to last question. If it's OK, here we are right on time. Yeah, I think so.
Let me just check my child care tax line. Uh, we're good to go back into the last question for you. And this has this relates just that I wanted to talk at least a little bit about the movie. Um. Do you feel like if growing up, if you had if you had been able to attend a camp like that, not exactly like that, but something similar where you had the you had the experience of being around other people with different kinds of disability that that would have.
Had a profound impact or had improved the way you thought about yourself, identified, saw the world. I think that's a great question and I want to know what you I will give my answer, but I want to know what you would say to that, too, because I think one thing that's interesting for me to think back on and if this had happened, is that what could have changed the story arc and kind of maybe spared me some years of shame and the decisions that sprouted from that shame.
I did know, I think, that I had been around other disabled people as a kid and I never really enjoyed it. I but so I like I started writing the short bus when I was very little and it was like only for disabled kids. And I remember getting on that bus and being like, where am I? And I don't belong here. And having kind of like that really strong reaction to get away. And and I think and I have like this vague sense that I really resented ever being just like put in a group with disabled kids, which I don't think happened a lot.
But I think or like maybe if there had been like. Like at the hospital, if I had been sort of assumed that I would want to be friends with the disabled kid and I didn't really want that assumption made, but I think when I think back on all of those, that reaction that I had, I think a lot of it is. A reaction to being pushed out of something as opposed to welcomed into something and I think the framing of that.
So it's not just a matter of like meeting other disabled people, but I think meeting other disabled people in an environment of freedom and joy and play. I do think that would have made a huge difference. And I I know that I know that connecting to disabled, disabled people now has been transformative for me and in the most empowering way. And I do think that as a child, I don't know if it would have. It has I don't know if it would have felt as transformative, because in my mind, I wouldn't have already gone so far down this path of shame, like it would have almost been like caught me before I even knew that I needed it is how I kind of think about it, which I think is beautiful.
Like what? What an idea that I would have been able to take something like that for granted. So yeah, I think that that would have I think that would have been really important for me, but I think it would have been important. But it was it was framed as not like, oh, here's your consolation prize camp, because you can't go to real camp, but like, well, you're like a part of this really cool group of people come inside and and be a part of this that would have felt different.
What about you?
But first, I love the way I love that answer, and I think there's a. A lot of I agree and I agree with it, and I love the way you framed it as kind of being pushed into versus being welcomed and having it be something. Different or interesting that you're experiencing, because when I look back on it, I had very few interactions with anybody with a disability growing up. Me too. So most of the time it was.
At the doctor at the clinic, and you don't want to be there anyways, right, so it's like, OK, this this is a part of my life that I need. I need this, but I don't like it. And everything that's here I don't want to associate with. So it was it to me, it was just like, I'm going to push that away as soon as I leave because. I don't I don't. I don't want those, so you're making associations that aren't correct, but you're still making.
Yeah, yeah. And there was no other context for seeing other people. Besides that, and I remember meeting somebody in high school for the first time. Who use the wheelchair, and he was he was I met him at a friend's birthday party and he was he was amazing. And I was I was actually kind of. Mad at my friend that he didn't introduce me sooner because then we were going away to college and it was too late. It was kind of too late anyways.
And then in college again, there was there was one. Person in my dorm room who had polio, and that was that was a quote, we weren't good friends, but we were friends and that was a cool experience. But that's all I got. And it wasn't until I was playing tennis at a club in Chicago where the tennis pro said, hey, I teach a bunch of wheelchair tennis players twice a month on a Saturday. Would you like to come in and play?
And I was like, Yeah, that sounds great. And then my mind started to open and it became a totally different experience. Oh, wow.
How old were you then? The.
I was twenty two. Wow.
Yeah. Well into your young adulthood. That's really interesting. Yeah, well, is there is there a camp like that now? Like what? What is there? Is there a version of camp?
I don't know if there's not. There should be.
It's not what was it actually called? Jenene religious zone. Yeah. Yeah, there should be. I feel like I think that that needs to happen. And there maybe there is some kind of version of that. There's a lot in the world and disability that I don't, I don't know about, but. It seems like I'm really jealous watching the documentary and seeing Judy human in all her glory.
Yeah, she was she is a phenomenal human being. I hope. I hope I can meet her one day. And actually, everybody that was involved, that documentary was incredible. It was. It was the. It was funny, it was sad, it was difficult, it was empowering, it didn't hide anything. And I'm just the. I know that the person who started the camp passed away a while ago, but it would have been an amazing conversation with them to ask, why did you start this camp?
What was what was the inspiration? What was the experience that made you want to do this? Because it just it was a phenomenal idea.
Yeah. And I was one of the things I love about that camp that I feel like could not be recreated was the the 70s vibe of like not very much oversight and like no regulations and sort of like here it goes, all the kids and see what happens. Like, I, I feel like that was part of the beauty of that was just the freedom that they got to experience together. Yeah, I would like to I would like to know more about that person who started it too.
There's definitely there's a lot about that camp that would not know if anyone's watching, but. Yeah. So did you watch. What is something that you think I missed in this conversation that you know, because I love your questions and I feel like you're a very good interviewer, I understand why other people have felt healing and good feelings from just having the conversation with you. I feel like you're pretty great at this. I don't know. I don't know what I would have.
You had to. Do you think is there anything else we should talk about?
Um. Is there anything about what you're working on now that you'd like to talk about that you think would be interesting for people to learn about?
Sure. Yeah, with the TV thing.
Yeah, or anything else?
Yeah, well, I. I am trying to put together ideas for a second book. Good grief. I feel like mother, it has to be a part of it. But this interview or this conversation is any indication. I my thoughts are very wobbly on it. But in the meantime I'm sitting pretty as an option to be a TV show and we're kind of working on trying to make that real and keeping all of our fingers crossed that that this show can go out into the world and.
Should be a part of people's homes and lives, and we were talking before we hit record about how important it is that we have a TV show with the disabled protagonist living her life fully and and and all the messes of anybody, any protagonists. And if this show doesn't make it out into the world, I feel I think that another one will feel like it's time. And I think people know it's time. And I think it's important. And I'm really excited.
I feel like, you know, we talked a little bit about. Just sort of like what direction we're heading as a culture today, and I it when it comes to disability and I feel like one of I'm biased. I'm like a storyteller and a writer. So I have a bias in this game. But I feel like storytelling in this moment, particularly like storytelling on screens is one of the if not the most powerful force for social change available to us.
And am I am really excited and eager for there to be more stories of disability in the world, for people to explore into and feel and be a part of, because I think that's transformative. And I, I, I'm ready for that transformation. I'm ready for people to not only think when they think of disability, think about the ADA and like, is there a ramp here, but like think of the stories of disability and the textures of that life and and then.
And then bring change to their communities from that space of understanding. That's what I'm hoping for. So keep your fingers crossed and your toes and and put your hopes into the sky for me, but for all of us that we get to make this show or that there's another one coming around the bend that can do that work and not just one. Let's bring a whole host of them. We can also, like there's there's a whole range there's a range of human experiences around disability that have not even been lightly raised.
Right. Right. And they're interesting stories like we've already heard we've already heard about I don't know, there's so many old stories that just keep getting retold. And it's like we've got a whole fresh water here. Come on, partake. A lot of stories here to tell, so I'm excited for this and all of those I want more.
So absolutely 100 percent. Yeah, I can't think the only character that I can think of recently. On screen, that was a hero. He turned out to be a hero in the end and people loved him would be Tyrion Lannister from Game of Thrones.
I never watched Game of Thrones.
You should be interesting to see your take on it. They did. They did go into it. And he was he was a central role in the show and. He. People love the people, did not want to see people wanted to see him, and he was he was vulnerable, weak. His father hated him. And yet he was he was a hero. And he was he was intelligent. He was brave. He was manipulative when he had to be because that show was focused on that.
But I'd be interesting to see what you think about it. In the meantime, I really hope this show takes off. I'm super excited to watch it. Fingers crossed. We really we really need this kind of show in the world.
Thank you. Thank you. I think we do. And I think we need lots of them. So let's let's get on it. Let's write those scripts.
Absolutely. So where can people find you? Where can people connect with you? How can people learn more about you?
I am. I'm on Instagram the most. So at sitting underscore pretty. But I also have a website that I update. I recently updated it, but it takes me a while. I'm normally a little behind on that, but it's it's fresh and updated. W w w Rebecca tossing dot com has a lot of resources teaching syllabi and links to podcasts and articles and things like that. So you can find stuff there too. And the book's coming out in paperback this summer and July.
So if you want to get a paperback version, it's a little cheaper than the hardback and it's coming out in July.
Fantastic. Thank you so much for the time. Your generosity, your insight. It's always. Yeah. So, you know, that that that show that we did with Faye, and that was really like for me, the launching point, that was like, OK, I have to do a podcast now. I enjoyed it so much. And it was it's just. You and B.J. will always have a special place in my heart because because of that, obviously because of who you are and what you're bringing to the world, but because we share that special, it was a really special one for me, too.
I am. I'm really happy to have connected with you and look at you, go look at you with your podcast and all of the things that you're going to make in the future. I'm really excited. So thank you for inviting me and being patient with my ridiculous schedule. I really loved this conversation and chatting with you and I. Let's do more.
Thank you very much, Rebecca.
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