'Sometimes teaching is embodying a boundary'

5 questions for writer and disability justice visionary Rebekah Taussig

Many of the people I interview for Examined Family are friends—people I know through professional collaborations or community organizing or my amazing social network of humans. This week is different.

I have never met Rebekah Taussig and don’t know anyone who knows her. I just fell madly in love with her work when I discovered it on Substack a few months ago, promptly reserved her book from the library, and inhaled that, too. The way she writes sucks me all the way in, even when I’m busy and distracted and thinking I’m just churning through some emails. There’s something about the visceral, shining humanity of her words and the way she moves through the world that satiates me. This is the kind of reflecting and living that I want to move towards in this moment of fracture and artificiality.

I hope you feel the same way. Without further ado, meet Rebekah…

Rebekah sits in her wheelchair in front of a packed bookshelf with a record player and family photographs. She is wearing Converse, jeans, a bright orange sweater, and a Golden Girls t-shirt.

Courtney Martin: I absolutely adored your writing about yourself as a little girl, innovating all along the way, still oblivious to so much of society’s bullshit. What part of her do you feel most alive in you today?

Rebekah Taussig: Oh, little one! At the question, my brain started turning over all the parts of her that feel pretty distant to me today – her unquestioning belief in her right to belong, her muddy, full-bodied play, her easy confidence. And then I remembered – dancing! I got my first wheelchair when I was six, and I quickly recognized the fluid ease the tool brought me. I made up elaborate dance routines with spins and wheelies. I pictured myself leading a troupe of dancers one day and dreamt of making flyers I could post to the fire hydrant in our front yard. I made up dances with my walker, too, practicing hops and turns on the sidewalk in front of our house, waiting to perform for my dad who was about to arrive home for work in his suit and tie. Dancing was delight and connection.

I don’t remember when I stopped dancing, but I know by the time I was in middle-school, the idea of dancing in front of anyone was MORTIFYING. I suppose in the way that is familiar to a lot of us, but also in the way that might be specific to someone who uses a wheelchair. My body’s particular way of dancing became embarrassing – horrifying, really – in its difference from all the other bodies in the room. I remember the bat mitzvah I attended where a boy from school asked me to dance; he put his arms on my shoulders, and we swayed awkwardly to Savage Garden’s “Truly Madly Deeply.” I thought we looked so silly, he must have asked me to dance on a dare. By the time my high school boyfriend asked me to homecoming, you couldn’t have paid me to do it again. I wore a black dress made of tulle. I think it was my mom who sewed straps onto the dress for a comfier fit. A friend’s big sister did my hair and make-up. My boyfriend and I made it all the way to the school parking lot, but never inside the doors. We spent the whole dance making out in his dad’s old Buick instead.

I do remember the day I started dancing again. I was in my mid-20s, just a few years out from divorcing that high school boyfriend, and sitting in a dark wedding reception hall without a date. Once again, I was wearing a black dress – this time my hair bleached white, my lips bright red – and Carly Rae Jepsen’s song “Call Me Maybe” started blasting. The urge to dance started in my shoulders. Then my neck, my arms, my sternum. That night I danced and danced and danced, one arm up, one arm spinning my wheels, body rocking to the beat. It was a delicious return to an embodiment I’d forgotten. These days most of my dancing is spinning around with my son in my lap or head banging with him to Florence & the Machine in the car. But unlike a lot of ways of being I’ve tried to return to or unlearn, letting my body move to the beat in whatever way it wants hasn’t been a hard one to hold onto.

One of the things you write a lot about is love and your lack of mental models for what love might look like for you. How do you think the cultural collage of disability and love/romance/sex has changed since you were a teenager?

It feels like a both/and situation. If we were to do a side-by-side comparison of the mainstream representations of romance/sex I had as a teenager next to the pictures teenagers have today, I would not clock an overwhelming shift in how disability is represented in the mix. This disparity remains a gross misrepresentation of just how often disability/illness ARE a part of romantic/sexual relationships, especially if we’re looking at the long arc of a lifetime (which is also relatively uncommon). I haven’t been out in the dating world for like 15 years, but from what I witness in my disabled friends who are, the same old patterns still exist. The shitty things people say, the immediate dismissal, the weird questions. It’s rough out there for everybody, and disabled people are often on the receiving end of an especially repulsive flavor of it.

And also. I can point to examples of disability appearing in stories of romance or sexual exploration that simply did not exist when I was growing up. The Netflix shows Sex Education and Special are two good examples. Hannah and Shane Burcaw’s YouTube channel Squirmy and Grubs and their essay collection Interabled. Alice Wong’s essay collection Disability Intimacy. I don’t read as much romantic fiction or fantasy, but I think there are more books in those genres that include disability to a varying degree of juiciness (anyone have any good recommendations??). And of course, while social media is a complicated tool (to say the least – I HAVE FEELINGS), it has definitely given us access to significantly more pictures of disability and relationships. Especially if you’re looking for it.

But more than anything, I think the most expanding cultural shift for all of us in the arena of romance/sexuality – disabled folks very much included – would be the breaking apart of rigid boxes we’ve historically placed around gender and sexuality. Queerness, I think, offers an expansion for all of us. It invites us to swipe all assumptions off the table and reimagine what this could look like. To really ask each other – What do you want? What really feels good to you? In Sitting Pretty, I talked about how all of our romantic/sexual relationships suffer when we lack imagination and cling to a rigid, narrow storyline of what sex is supposed to look like or the possible shapes of a romance. I think queerness could be one road to that kind of imagination. I guess I would just invite us to include disability in that conversation more directly and more often than we tend to now.

Rebekah’s book cover for Sitting Pretty - an image of her in her wheelchair that has been drawn on top of as if partially animated.

One of the threads through this book is the burden of teaching less marginalized people–how exhausting and eternal it can be. I’ve had a version of this conversation with so many friends. What do we do about wanting someone to evolve, but not having the energy or desire to do the teaching all the time?

Ahh, I also think about this All The Time. Just a couple of weeks ago on Halloween I was rushing into the house with a lap full of costumes, and this kid wearing a Harry Potter costume walked by. We exchanged happy halloweens, and then he asked, “What happened to your legs?” And I did not want or have time to get into it. I said, “Awww, you don’t need to worry about it!” with this tone like I was letting him off the hook. Don’t fret, kid! It’s Halloween! Anyways, I keep thinking about that little exchange, and I find this little fleck of guilt niggling me. I think there is this deep obligation to educate that a lot of us learned – to explain ourselves! Maybe especially for those of us that grew up in bodies that immediately, quickly signaled difference? I have a vivid memory of sitting next to my mom at the front of my new second grade class as she explained my body to the room. I think the idea was to get ahead of it? Like if you answer all the questions in one fell swoop, the questions will all be answered, and you will be made human to the onlookers. I’m not sure it works like this, though. And it’s taken me much longer to realize that how a person responds to questions like this communicates just as much as what you answer. For example, taking time out of a school day to explain one student to the rest of the class may satiate some questions about that body, but it is also showing the room that this body warrants explanation. So I guess, in answer to your question, I would simply say – sometimes teaching doesn’t require answering a question or giving a lesson. Sometimes teaching is embodying a boundary. Showing up without explaining. Being yourself out loud without interpreting for others. At least, this is a new way of thinking about it that I’ve been trying on.

You write, “The medical and social models of disability aren’t theoretical to me. They are just as much a part of my days as gravity or Netflix.” I think this speaks to one of the fundamental disconnects within progressive communities–those that relate to injustice theoretically and voluntarily, and those who relate to it experientially and without choice. One answer to bridging this gap is simple humility and tenderness. Are there other things you think we need to employ as we try to take seriously and personally the challenges and insights of “the other?” (This piece a friend recently passed on spoke to some of the dynamics well, too.)

Thank you for sharing this essay! (For anyone reading, you should go check out Chad Deshawn’s piece!) One of my favorite lines from Deshawn’s essay is that “Curiosity isn’t evil. It’s just incomplete.” Like what does one do with the information once all the questions have been answered?

I think the quote you mention in your question is from the chapter in Sitting Pretty when I first taught disability studies to a group of high school students? In it, I reflect on how personally I felt the material I was teaching. When I taught them about the social model of disability, I wasn’t going over a dried up bullet point list of distant theories. I was sharing ideas that transformed the way I experienced something as intimate and human as dancing. And so of course I was stunned – crushed, really – when I listened to some of them toss these ideas around like a Koosh ball, casually discussing whether it made sense to define disability as anything other than a defect.

What I hear you getting at in your question is what to do with the overwhelming gap between human life experiences. Even when we genuinely care about another person or group, we are often not up against the same stakes, don’t carry the same histories, don’t elicit the same responses from the people around us, haven’t felt the same injuries, don’t always hope for the same futures. The gaps between us can be immense.

And also, as a writer and storyteller, I think the best way to bridge that gaping gap is to sink deeply into another person’s stories. So often, I think we try to understand and explain through argument and cerebral persuasion. (And by “we,” I am raising my hand high to include me. Hello, please see that whole semester as a case study!) This is how we should think about people, this is how people should be treated, this is why you are wrong and I am right. It’s not that there isn’t a place for that kind of discourse, but I think it’s quite easy to get stuck there. And it’s hard to create bridges to others’ experiences – to be transformed by another person – when we are both spinning around in our own heads, arguing about ideas.

Storytelling drops us down to our gut to places that exist before language. It gives us answers to questions we didn’t know we should be asking. A compelling story can shift our thinking or propel us to action, but I find that there’s a sturdiness, a rootedness that comes when you start by slipping into someone else’s world. I would never claim that the outcome is guaranteed. Plenty of powerful stories have been picked up and tossed aside, read and forgotten. (I taught English for 10 years. LET ME TELL YOU.) And also, it remains one of the most effective tools for connection and expansion I’ve ever used or experienced.

A picture of Rebekah outside in front of a fence and house holding an incredibly cute bald baby in high-wasted tights and a t-shirt with leopards on it.

So much of this book is about imagination. How has being a mother changed your relationship to your own imagination?

Ooooh, fun. I love this question. Okay, one thing I’ve been noticing in my own thinking since becoming a mom is this subtle shift away from the immediate problems pressed right up against my nose and toward a much longer game. More and more, I find myself pulled into imagining a more distant world I want to exist for my son and his friends decades down the road.

I first noticed this shift in my attention/priorities about a year ago when my son started pre-school, and I became the object of so much predictable curiosity from the kids in his class. I’ve been disabled most of my life, and as we’ve already talked about in this thread, I’ve been answering kids’ questions about my body from the beginning. But this familiar ritual felt immediately and distinctly different once my son was there to witness the scene. The point was no longer about satiating momentary curiosity – instead, I felt a responsibility to actually model something deeper for them. Maybe give them a glimpse of the world I hope we can build. At first, I didn’t know what this world/modeling would look like in this case. I just knew that sitting there and answering the same questions over and over again by disclosing my personal medical history was not the picture of disability I wanted to give them. So I was forced to really consider what I hope it feels like to be disabled two or three or four decades from now. Because it’s not this, right? (And by “this,” I mean the moment with the kids and so much more.) It’s not relentless educating, saying the same thing over and over again, trying to convince someone you’re a human just like them. It’s not a world where someone needs to write a book like Sitting Pretty.

I started to dream of a future where we fundamentally accept that humans exist in an infinite variety of forms. That families and parents and kids and friends and neighbors and strangers move through the world in all sorts of ways, our minds work in all sorts of ways, our bodies look and work in all sorts of ways, we approach relationships in all sorts of ways, we talk in all sorts of ways. I want this to be so obvious that explaining it is a snooze fest. I want them to live in a world where asking someone to explain their most noticeable difference isn’t nearly as interesting as experiencing the actual person in front of us – How do they see the world? What makes them laugh? What fires them up? What new kinds of play might you discover together?

The trickiest part for the moment: what does it look like to usher in a new world when we’re still in this one? I don’t know. Right now it feels like the practice of toggling both. I still travel the country and speak to groups about things like ableism, because that is still needed. Sometimes I answer kids’ questions, sometimes I pass. My writing is a space where I find the most freedom to play. What is it like to tell disabled stories that aren’t designed to teach anyone anything? What is it like to write on all kinds of subjects from my particular, disabled, POV? This feels alive and juicy to me.

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We have donated to Imagine That! Kansas City in honor of her teaching us as an Examined Family with these gorgeous answers. She had this to say about the organization: “They are a local nonprofit and artist studio that supports Kansas City artists with intellectual disabilities. I especially love the way they empower and defer to the artists that work with them. There is a lot of creativity and dignity in this place.”

You can order Sitting Pretty here, and Rebekah’s children’s book, We Are the Scrappy Ones, here, and subscribe to her Substack here.

I was so inspired by Sitting Pretty that I ended up making a little book report on it (thanks for the endless inspiration Christie George of Practice Practice). Sharing a sample of it with you here: