On her Instagram account, Rebekah Taussig shares photographs and “mini-memoirs” about what it means to live in her "particular (disabled, female) body)."
Taussig's new memoir in essays, "Sitting Pretty: The View From My Ordinary Resilient Disabled Body," reflects on her experience growing up in Kansas after being paralyzed at the age of three from cancer treatments. She also explores how "disability affects all of us, directly or indirectly, at one point or another."
Here are some excerpts from a recent conversation on Up to Date.
STEVE KRASKE: I can probably guess, but why did you want to write this book?
REBEKAH TAUSSIG: Part of it, like you might assume, is that I grew up a world that didn't really have any books like this. I didn't have any examples or stories that really felt familiar to me or that represented the nuance of my actual experience. So that was part of it.
But about five years ago, I started writing these, I call them mini-memoirs on Instagram, just about life in this body of mine. And (I) didn't really necessarily expect anyone to care because it felt like such a singular experience to me. But I was really surprised to find that people were interested — either they saw themselves in those stories or didn't and wanted to know more about them.
So I think both of those things really motivated me to kind of stretch my words out from the Instagram space into an actual book.
KRASKE: Now you have a doctorate in both creative nonfiction and disability studies from KU, and a concept that comes up a lot in your book is this word ableism. Can you define what that is for those of us not in the know?
TAUSSIG: Essentially it's a framework that really favors and almost obsesses over this notion of a perfectly able, infallible body, and really shapes the world in a way that does not consider or honor or respect bodies that deviate from that sort of ideal. And most of us honestly don't fit that ideal.
So, in a way, one of the things that the book explores is all of the ways that even if we don't identify as having this fixed identity of disability, there are ways that ableism kind of punishes all of us, just because most of us are existing outside of that ideal.
And even if we happen to be inside that ideal for a moment, we all are aging. And eventually, we're not in that tiny little hub of the ideal body.
KRASKE: You were part of a big family as a kid. You wrote about sharing bunk beds with your siblings and piling into the backseat of cars. What was it like growing up like that?
TAUSSIG: I had a great time, honestly. I'm the youngest of six kids. And I loved growing up in a family that was really busy and loud.
And, now I just had my first child. Otto was born in May of this year. And I'm thinking like, 'How did my parents possibly do this with six children?' I don't know how to recreate this for Otto at all.
But, for me, it was one of the most beautiful experiences of childhood. All of my siblings have three or four or seven kids, so they're definitely carrying that large family legacy on.
KRASKE: You write about how you didn't feel different from your siblings, even though you were disabled. Why was that, do you think?
TAUSSIG: Yeah, well, honestly, my family never really focused very much on my disability — for good or bad. I think that there are definitely enormous benefits to that. And there are some losses with that too. It took me a long time to start actually unpacking it for myself.
But when I was 3 I became paralyzed just from cancer treatments. And so that was sort of just like this seamless transition into, 'Now our youngest, you know, her body just moves differently.'
We didn't really focus so much on, on how that made me really different from my siblings. We kind of were all still just this group of tumbling around in the backseat of the car and the bunk beds, as you mentioned.
KRASKE: This is so interesting to me because you said you would physically pull yourself up to the top bunk, and your legs were all scabby from dragging yourself around. What do you recall when you look back on all that?
TAUSSIG: I think I felt really pretty empowered. I think I felt really comfortable.
But I loved my top bunk. It felt like I had earned it, you know, I didn't have it at first. And my brother moved on to his own room and I was like, 'Finally, the top one is mine.' So I wanted that space. It was coveted.
KRASKE: Could you describe how you pulled yourself up to that bunk?
TAUSSIG: My legs have a little bit of strength, but I really relied mostly on my arms. There was sort of like a ladder up the side of the bunk bed. And so I would really pull myself and then sort of prop myself up with my legs and then pull myself up to the next rung. And then eventually I would get far enough up that I could sort of like flop myself over the edge and I was on the top.
It didn't, it didn't feel like a struggle. And that's one of the shifts that kind of came to me as I got older was realizing the way that people saw me versus what it felt like actually to be in my body and to move in, in whatever way it made the most sense to me.
KRASKE: Do you recall when that shift first began for you? Was there a moment when it hit you that people saw you differently?
TAUSSIG: Several moments. It was wave after wave where I had to slowly realize like, 'Oh, wow, no, I'm different. People look at me differently. People treat me differently.'
It was in stops and starts. I talked a little bit earlier about the representation of disability in stories and mostly I was just kind of saturated in the representation of bodies that weren't like mine. So when I started to equate, you know, notions of like what beauty is, or what growing up to be a powerful woman would look like, I started to realize that I didn't match those images. That was a big part of it for me was recognizing, 'Oh, I fit somewhere outside of this.'
Rebekah Taussig spoke with host Steve Kraske on a recent edition of KCUR's Up to Date, produced by Mackenzie Martin. Listen to the full conversation here.
The University of Nebraska-Kearney hosts a reading and Q&A with Taussig on September 23, 7 p.m. - 8:30 p.m. Join by Zoom.
