My son Otto started preschool this fall. The previous year, during every daycare pickup, our reunion was routinely punctuated by the same questions from the other 3-year-olds in the room: Why are you in that wheelchair? What happened? How do you get in a car? I am used to questions. I’ve answered them my entire life with little fanfare. But these kinds of interactions started to feel different as soon as my son was there to bear witness to them, over and over again.
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As we prepared for this fresh start with a new group of people, it felt like a chance to move out of autopilot and reset the terms with intention. I wanted an approach that felt better than the previous year’s, but I struggled to imagine what that might look like. What would it take to shift a dynamic that felt so innate and inevitable? Was it even possible for me to call the shots in a room full of all-consuming curiosity? And what exactly were my goals here?
I mulled it over with anyone who would listen. Some people thought I should have a class visit where I explained my disability to the kids, maybe read a relevant book, and answered all their questions. To be fair, I am a good candidate for this kind of conversation. I started using a wheelchair when I was 6 years old, and when I discovered disability studies in my late 20s during graduate school, I understood, for the first time in my life, disability as an identity. This changed everything for me. Suddenly, I was rethinking an entire meaty part of my life that had remained relatively unexamined. I started creating what I called “mini-memoirs” on social media that brought readers into my firsthand experience of disability – the feeling of being stared at as I grip the side of my car and drag my feet across the pavement every time I fill my tank with gas, of being prayed over by strangers for my healing, of realizing as a little girl that none of the princesses looked like me.
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My wheelchair became a prominent feature on my Instagram page. When I was younger, I took care to keep my disability out of photos, frequently cropping my wheelchair out of the image. On one occasion, I took out a pair of scissors and cut my legs off a print because they looked “too paralyzed.” As I took the reins on my account, I relished the chance to pull disability back into the frame – to throw more images into the world that disrupt and expand the stories and emotions so often put upon disability, to show my paralyzed legs and wheelchair existing in the middle of graduations and cute couple selfies and pregnant bellies. But also, somewhere in the soup of motivations, I started to understand the wheelchair as part of my brand – the image people recognize as they scroll. Over time, I rarely deviated from posts directly tied to disability. Even if it wasn’t at the center of the story, I made sure to connect the dots with a bold line for readers. These lines weren’t untrue, and they highlighted connections so often missed, but as a collection, they inevitably drew a portrait missing some dimension. Still, by definition, brands aren’t meant to capture every layer. They’re curated.
While disability is a newer identity to be included under the banner of marginalized groups, this embodiment catapulted my writing into the public conversation in 2020. It was a time when industries and algorithms sought to amplify overlooked voices like never before. Companies started disability affinity groups, and diversity, equity, inclusion, and accessibility (DEIA) programs had funding to bring in folks who could educate on their distinct experiences. It was within this landscape that my book, Sitting Pretty: The View From My Ordinary, Resilient Disabled Body, made its way into the world. The book captures large swaths of my life, focusing the narrative through the sharp lens of disability. Five years after its publication, I still travel around the country speaking about disability, ableism, accessibility, and inclusion. It’s a dream to do this work.
Which might explain why I was surprised this fall when I realized I wasn’t eager to visit my son’s class to educate on disability. This is my brand, my wheelhouse, my area of expertise! What was this hesitation? And yet I found myself much more excited to talk to the kids about their pet kitties or the sparkles on their shoes than my legs or my wheelchair. I understand my difference is unavoidably visible, and it might be unfair to expect these kids to accept that difference without question, but I noticed the longing. If every other parent who entered the class was allowed to be just another human in the room, I wanted that, too. I wanted these kids, and especially my son, to see that our family embodied one splash of difference in a sea of differences.
To be very clear, I’m not interested in being seen as “more than my disability.” I am deeply rankled any time someone says, “Disability doesn’t define you.” Disability is not an unfortunately placed pimple I need to hide or a tragedy I need to triumph over. I claim the titles disabled mother and disabled writer joyfully. So I don’t hold up my new, complicated emotions with pride or point to them as a revelation of the “right” way to feel. I hold them up – for you and for me – as an exercise in paying attention. Can a longing help us clarify the goals? The long-haul, one-day dream?
This longing didn’t stay contained within the walls of my son’s classroom. About a month after the school year started, I launched a podcast with my friend Caitlin Metz. At the top of the show, Caitlin and I introduce ourselves with our identities at the forefront: “I’m Caitlin Metz, a nonbinary illustrator and designer. And I’m Rebekah Taussig, a disabled storyteller and writer.” During our weekly recordings, I’m not thinking about branding – I’m looking at my friend across a screen, giggling and aching at the impossible project of being a parent and a person. So many times, as I pull off my headphones at the end, I realize, yet again, disability had been left somewhere in the background of the discussion, even in conversations where this particular point of view would be quite relevant, like our episode “Should We Have a Second Baby?” or our interview with cartoonist Sacha Mardou, “An Ode to Therapy.” In both, I mentioned disability only in passing. It was only in retrospect that I wondered, Did I miss the mark? Should I have talked more about disability today? This doesn’t happen every week, but enough to prompt a mini crisis. What ideas are worth sharing with a public audience? Am I failing to offer the content people want from me? Am I doing a disservice to my career? Soon the angst pressed deeper than branding or career building.
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I thought back to a few weeks before Otto started at the new school when I got a call from the director. Her voice sounded a bit nervous as she explained that they were going through their building, trying to make sure everything would be easily accessible for me when they realized they didn’t always know what to look for. “You’re the expert on what you need,” she said. “Would you mind coming to campus for a quick visit so we can move through the spaces together and see if anything isn’t working for you?” This school is the third place we’ve taken Otto for childcare and the first that asked me what I need as a parent who uses a wheelchair. I started to cry. “Thank you for asking me,” I said. It was a vulnerable, brave question that exposed them to my potential criticism. What if I didn’t like them calling attention to my difference or was upset because they didn’t already know what problems needed to be fixed or what the solutions might be? But the biggest message I took from the call was that they recognized my needs would be different from the other parents’, they wanted me to experience the ease of inclusion, and they knew it was important to ask the question: What can we do to make you feel at home here?
The truth is, many of us with disabilities aren’t just another parent in the room, person on the plane, or citizen trying to evacuate a fire. Do we have the luxury of being seen with dimension when so many people still don’t even know what ableism means? When interabled couples are still looked at with skepticism, when we’re still fighting for inclusion in schools, housing, and workplaces, when physicians across the country still perceive disability as a direct diminishment to quality of life? When 67 people die in a plane crash and the President of the United States baselessly suggests the tragedy is a result of the FAA’s willingness to hire disabled employees? I have a microphone, a platform, that so many people don’t have. Am I squandering the power of my voice when I speak about anything else?
I tell my podcast co-host I’m worried I’m not bringing enough disability into our conversations. I trip over my words trying to explain the competing feelings – the desire to talk freely about all kinds of things, the fears about blurring the edges of a brand that has brought good things to me and those who’ve followed along, and the very real weight of this greater responsibility to represent a group of people. Again and again, Caitlin asks, “Why do you have to choose?” Why must it be a conversation with one big, bold spotlight on disability or a conversation that ignores disability? Why isn’t there space for an organic unfurling, a messy tangle of threads that overlap and deviate? Where does this mandate come from?
When my parents moved our family to Kansas City in the middle of the school year, I showed up to a new second-grade class in my hot-pink wheelchair and sat next to my mom at the front of the room. “It’s a miracle that Rebekah is alive,” she explained, filling in the details of my childhood cancer and subsequent paralysis. “But now she has to do things a little bit differently than other kids.” The students stared, looking back and forth between my mom and me. I bowed my chin, peering up every few moments. “She just wants to be treated like everyone else,” she concluded emphatically. “Now, does anyone have any questions?” The hands shot up. It’s only 30 years later, considering how I want to show up to my son’s classroom, that I notice the irony of insisting that one person “wants to be treated like everyone else” when that person is the only one with a designated time for Q&A.
As an adult, I’ve learned approaches to educating folks on disability that are more informed and reflective, connecting my personal experience to a larger history and social patterns. Still, I learned my job early. My body inspired a response in those who saw me – fear, heartbreak, confusion, dismissal, curiosity – and I was there to help them understand, answer their questions, shift their thinking, make them feel better, insist again and again that I was a human just like them. There was no need to grapple with what I wanted to bring to the world; it felt clear what the world wanted from me. Learning to read those cues wasn’t just a neutral process. When you live in a disabled body, your care, your survival often depends on your ability to know what the people in the room – doctors, teachers, caregivers, peers – want from you. How can I ensure you’ll actually listen to me? Stick around? Advocate on my behalf? By the time I was 9 or 10, I started giving talks to auditoriums and sanctuaries full of people, providing them with a narrative of disability that could smooth out the wrinkles in their furrowed brows.
What happens when that body intersects with social media? Algorithms, likes and shares, podcast analytics, downloads per episode? With this kind of data, the mandate is made even more precise. Explain, educate, alleviate, illuminate, and crush my experience into little gems of wisdom I can throw out like candy over an audience. There is a voice in my head who represents the career coach or a best-practices-for-personal-branding article shouting from the sidelines. You’re losing your audience! Focus your content! Stick to your expertise, your unique POV! Stay consistent and cohesive! Five-step plans for building brands are pulled together from clear, observable patterns. Audiences are more likely to gather when you follow these rules and more likely to drift when your content veers too far from what they’ve come to expect. I’m certain there are a host of algorithmic reasons that drive this outcome, but I’m most interested in what the pattern does to our brains as we sort out how to represent ourselves online.
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As I grapple with how to hold my identities – in my son’s school, online, within myself – I watch the landscape shift in front of me. It’s not a new shift, but it gains speed in a matter of months, then weeks, then days. I hear about another university, another business, then the federal government cutting DEIA programs. I learn about Texas v Becerra, a lawsuit filed by 17 states that seeks to make Section 504 of the Rehabilitation Act unconstitutional. This law has protected disabled people in schools, workplaces, hospitals, and out in their communities for over 50 years. I’m under no illusion that all DEIA programs or 504 accommodations are executed perfectly. Meaningful reassessment and revision are always important to better reach the goals we set out to accomplish, but the swift toppling of these programs is not about getting better at creating a more inclusive world. The goal is to end the project.
I understand the longing for a world where humans aren’t organized into tidy identity boxes. I’m grappling with it in my own tiny universe. There are ways we are the same, and also it’s vital we understand the ways we experience life differently. I’m weary of a world that decides my brand for me – sees my body and expects explanations, solutions, one kind of story about one kind of thing – and also we can’t belong in a world where our inclusion is up for debate. It can feel almost impossible to embody both of these realities at once. We trade one for the other, erasure or spotlight – “I don’t see you as disabled” or “I follow you to learn more about disability.”
No one is standing over me, ordering me to choose, but brands demand focus, politics demand action, and yes, I’ve found, kids demand answers. The river moves in one direction. But where does that current take us? What parts of us get lost when our lives, stories, and selves are shaped only in reaction to the world outside of us? What stories remain untold? What happens to subtle stories? Unresolved stories? Surprising stories? Stories that hold no teaching moments or call to action but are no less real? What remains unimagined? As I look at my son and his little friends, sucking up the great wide world at alarming speed, I keep wondering about the end goal. When do we get to stop insisting that we’re whole humans and just get to be whole humans? How do we build that world while we’re still living in this one?
There is a little whim, a flickering spark in me that sizzles toward silliness and frivolity, wishing to blur the edges of a fixed brand and play freely in the wide open spaces of discovery. Following this impulse can feel self-indulgent to me, but I’m starting to notice something else. Unlike the never-ending work of looking out and reacting – to misconceptions, questions, injustices – the flickering whim comes from within me. No one is asking me to pay attention to it. There is no guaranteed audience if I do. But perhaps that is the power of it. Surely there is something revolutionary about a disabled woman learning the skill of listening to and protecting the glow that exists only deep in her gut.
In the end, I visited my son’s class as a reading buddy, which meant I was one parent among many popping in for an afternoon to read with kids one-on-one or in small groups. I brought a bunch of our favorite books and let the kids choose the one they wanted to read with me. Some of them included depictions of disability, most did not. One kid picked Caroline Cupp’s and Jessica Slice’s new book This Is How We Play, and we got to chat about learning to play checkers with their parents and building forts in our house. Two kids asked why I use a wheelchair. I answered briefly: “This is how I move through the world – how do you move through the world?” The conversations quickly turned to the cars and scooters and bikes they use to get around.
To be honest, this afternoon didn’t flip any sort of switch for an entirely new dynamic. It’s still not unusual for kids to ask me about my wheelchair. But showing up in this way gave me an image I keep coming back to. As we read together, one girl leaned in close, her side against my wheel, her elbow on my tire, a comfort and intimacy with a wheelchair that mirrored my own son’s. One wheelchair present, included, and integral within a larger scene unfolding in a larger context. One disabled parent figuring out how to set her own terms at a school invested in building a meaningfully inclusive community.
And maybe this is a glimpse at the long-term goal I dream of – disability as a living part of a greater whole. Neither hidden in the shadows nor forced into the spotlight, but integrated into a community, accepted as one valuable part of our shared humanity. I don’t know if that world is possible, but I’m looking for windows of space – in a classroom, a podcast conversation, my own creative interiority – to just be, to just exist as fully, absurdly human, disabled and everything else. This is not a project to minimize disability or ignore the reality of this world at this time, but a sideways route to play with resetting the terms – an embodied storytelling that practices the showing alongside the telling. Because I think I need new strategies for the days ahead. It’s feeling too easy to assume that all of the teaching and naming and advocating may all be for naught. Could following the whim be part of the deep collective work of imagining a different world? I’m trying to believe it could be just around the corner.