is a writer and teacher, living with two orange cats in a very small, very old house in Kansas City. She feels at home in a thrift store, likes her music loud and heartfelt, and is an energetic and candid storyteller.
Rebekah has been paralyzed for as long as she can remember. It wasn’t until her mid-twenties when she began unpacking what this meant to her while pursuing a PhD in disability studies at the University of Kansas. Her work bares very intimate and honest depictions of what it means to live in her particular body and studies the parallel between the stories we tell about our bodies and our tangible, lived experiences. She actively participates in the cultural perception of disability through personal essays, some of which are published in Under the Gum Tree and The Florida Review, while others are linked on her personal . has provided a platform for the creation of “mini-memoirs” where she explores sincere representation and the nuances of living as a woman with a disability. Currently, she is working towards a memoir that considers the familial, medical and religious narratives that shaped an early understanding of a body that is different than most. Rebekah asks questions of herself and others as she contemplates the complexities of disability. She is open and empathetic — encouraging all of us to listen, see and celebrate differences without shame or assumption.
We are so excited to share Rebekah’s voice as she leads us through a conversation on the conflicted intersection of design and disability at home. —
Photography by Micah Jones
Design*Sponge: Tell us a little bit about your work and studies on self-representation, narratives of embodiment and disability as an identity.
Rebekah: As I studied more about the ways disability is represented in stories across history, I learned one fundamental insight: the vast majority of stories told about disability are created by non-disabled people. Because people with disabilities are historically excluded from controlling these stories, disability in mainstream culture is often twisted into a humiliating, punishing, or patronizing shape.
For example, disability is often used as a metaphor (Mr. Potter in It’s a Wonderful Life, Colin in The Secret Garden), a plot device (Raymond in Rain Man), or as a tool to inspire compassion or “softness” in non-disabled characters and audiences (Tiny Tim). Characters with impairments are depicted as either “super-crips” triumphing over life’s adversities (Pollyanna and Forrest Gump) or pitiable, isolated victims who’d rather die than live in their impaired bodies (Maggie in Million Dollar Baby, Will in Me Before You.) Oh, and sometimes we get to be villains, too (Captain Hook, Darth Vader). These narratives reinforce that chasm between the disabled and non-disabled, and, in a way, this makes sense — the people telling these stories rarely know what it feels like to live in these types of bodies.
Here’s the exciting part: in the last 20 years or so, more and more people with disabilities have begun to tell their own stories. Part of this is a result of the memoir boom sparked in the late twentieth-century, but our increasingly digitized world is also curating spaces of self-narration for all kinds of people. People are writing memoirs, blogging, posting selfies, hosting podcasts, vlogging, and contributing to disability-themed anthologies. They’re using these spaces to tell stories of unique embodiment— expressing what it feels like to be seen, to move through public spaces, to experience intimacy, to live independently and dependently, to wake up in the morning in their very particular bodies.
This is powerful for lots of reasons. First, self-representation generates more stories about disability, more examples of what life can look like. These stories invite nuance — contradiction and imagination — to the experience of disability. They also provide more opportunities to affirm to other disabled folks that they’re not alone. Disability is traditionally framed as an individual’s personal loss, a burden to carry on your own, a freakish set of experiences unique to your weird life. But the more we hear each other’s stories, the more we see patterns and similarities. Stories help us forge connections, form bonds to each other — they expand our community and create stronger, deeper roots.
This is one of the ways I’ve seen disability take shape as an identity. When disabled folks see how we’re part of a group with shared history and experiences, we can collectively push against the narratives that either categorize us as broken, defected, inferior versions of our normal, better, non-disabled selves, or superheroes for continuing to go about the ordinary business of living. Instead, we can see ourselves as a part of a vibrant, dynamic, resilient, complex group — perpetually idiosyncratic and part of something much, much bigger than ourselves. While this doesn’t change everything, it does make a fundamental difference — we are not alone.
Design*Sponge: How and why did you choose your home? What are some of the ways you’ve seen stigmas played out by others while searching for living spaces?
Rebekah: It took me seven months to find my current home. As a graduate student, I have a scrimpy budget, and as a woman with a disability, I need a living space I can enter and move through without barriers. Maybe these don’t sound like extremely narrow parameters — I certainly thought I’d find something soon enough. Instead, I discovered three basic categories of housing, none of which worked for me. 1) Places that were affordable, but inaccessible (e.g. stairs everywhere, inaccessible parking, laundry units, and bathrooms), 2) places designated for low-income, disabled people with waiting lists in the hundreds (I’ve had my name on three waiting lists for subsidized developments like this, and my name hasn’t reached the top on any list in two years), and 3) places that were brilliantly accessible (with sleek floors, wide doorways, and elevators) and spectacularly unaffordable. After scouring the internet for places, my boyfriend and I resorted to driving up and down streets looking for any building that might work. One night when we got home from a drive like this, he started crying. “How is it possible that this city doesn’t have any place for you to live?” To be honest, during those months of searching, I felt like my city was flipping me off. The message felt clear: we don’t want you here.
Eventually, my previous housing situation ended, and I still hadn’t found a place that was both affordable and accessible. As a 29-year-old woman, I moved back in with my parents. This was simultaneously wonderful (thank you, M & D!) and defeating. I was so grateful I had a place to go, which is not the case for many folks. At the same time, I was sleeping on my hot pink childhood bed, searching Craigslist every day for a place of my own. Finally, I found a little house with street-parking and only a few front steps. I thought, If I can find a way up that curb, and we build a ramp, maybe this could work? As soon as my boyfriend bumped me up the front steps and through one of the two front doors, my heart swooned. Home! It’s not an accessibility dream — I park my car on the street, pop my wheelchair up the curb to get to the steep ramp a KC non-profit built for me (for free!), and I can’t fit my wheelchair in the bathroom. I’ve found a routine that makes this set-up possible, though, and so far, I’ve been able to pay my rent each month.
In retrospect, I can see that my city wasn’t actively trying to send me the message that I’m unwanted here. Instead, the message might be something more like, “We’re just not thinking much about you at all” — a sentiment that intends no harm even as it pushes people out. I think my experience finding my home illustrates a key difference in what it feels like to move through the world as a disabled or non-disabled person. Non-disabled people hop on buses, walk down sidewalks, pop into a public restroom/shop/diner, and move into homes that are essentially designed with their bodies in mind. As a person with a disability, you are one of a few people who are thinking about how to accommodate your body. And when you meet someone who is thinking about your accessibility — like the organization that built me a ramp for my house, — it feels as spectacular as the sky slipping open and shooting gold coins and Skittles over your head.
Design*Sponge: Talk about your own process of styling your home. What were some of your decorating goals and how do you need your home to function? What have been challenging or unusual aspects of your home?
Rebekah: When I was about seven years old, my sister and I used to go play at the Beeman’s house. The Beemans were a family with three whimsical girls, a papier-mâché artist mom who entertained us by putting orange slices in her mouth and pretending to be a monkey, and an entomologist dad who read us The Wizard of Oz, doing all the voices. All the doorknobs were glass, the hardwood floors bowed in the middle, and the rugs didn’t match the patterns on the sofa. The walls and tables and desks were all covered in art made by children and masters. It was rich with textures and colors, cluttered and just right, energizing and cozy. Nearly 25 years later, the Beeman’s house is fixed in my brain as the picture of what a home should be — a place to feel inspired, free to create and dance and make messes and simply be — a place that swaddles you in stories and vibrant life.
One of the reasons I was drawn to the home I live in now was because its bare bones reminded me a bit of the Beeman’s house. This house was built in 1895, so all of the doorknobs are wobbly, and there are cracks in the walls. It has a farmhouse kitchen sink, a free-standing, claw-foot tub, and it’s full of unexpected quirks (like an extra front door and ancient knobs on the vents and locks). From the day I moved in, I set to work filling the rooms with colors and books and patterns and plants and artwork and thrift-store treasures. After almost two years of living here, this house has started to feel less like an inanimate structure and more like an active participant in the family — the one who holds space for our creativity, collects our stories, prioritizes our comforts, greets us in the morning, and swaddles us at night. These are the rooms where my kitties curl into warm nooks and corners, where my boyfriend and I wreak havoc in the kitchen trying to figure out new ways to cook fish, where we litter the dining room with decoupage and collage projects, and transform the study into a recording studio. At night, I am lulled to sleep by the sounds of the pipes knocking and my kitties’ paws padding across the hardwood floors.
At the very same time, this older, eclectic style is often at odds with my particular disability. My exquisite, free-standing tub is not an ideal set-up for easy transfer, for example, and popping up the curb while I’m carrying groceries is a bit of an ordeal. If I kept looking or had more money or waited longer to get into an accessible, subsidized place, I’m sure I could find a home that better suited my mobility needs. While this would make it easier to get around, “disability designated” spaces often feel more like hospitals than homes. At this point, I’m making more accessibility compromises for style, but it’s not lost on me that a lot of people in the disability community would not want to or be able to make this kind of trade. For now, the toll of the curb feels worth the price to open my front door and slip into the space that feels like home, but I’m not sure how sustainable this will be in the long run.
Design*Sponge: What kind of design and decor home needs are not being met for those with different mobility?
Rebekah: In my experience, the world of design and décor rarely intersects with the world of disability. When I think about the things that are designed specifically to accommodate my disabled body — ramps and handrails and lifts, etc. — utility is almost always prioritized over aesthetic. These accommodations usually stand out as the thing-that-does-not-belong — the piece that is slapped on as an afterthought, the blight on the original structure. How many ramps are located by the dumpsters at the back of a building so we can hide the “unsightly” accommodation? (A lot, if you weren’t already counting.) Don’t get me wrong — I would much prefer any form of accommodation over none, but I do wonder how accommodation could be integrated into design, as opposed to being the tacky addendum.
There are exceptions to this. We’re starting to see more mobility aids designed with aesthetics in mind — with a little more funk and a little more flair. Activist Aimee Mullins is a great example of what can happen when disability is no longer seen strictly as a problem to solve but as an opportunity for imagination. Mullins had both of her legs amputated when she was quite young, and as an adult she has collaborated with artists and designers to create a collection of innovative, whimsical, stunning prosthetics. She wears legs made of solid ash, intricately hand-carved with grape vines and magnolias, legs that look like they’re made of glass, another set that gives the illusion that she’s walking on jellyfish. Instead of viewing her missing limbs as a something to hide or normalize, she sees this part of her body as a prompt for imagination, a portal to originality.
I have to wonder what might happen to our living spaces if we applied this type of inspired ingenuity to more of our living spacing. I think this approach would serve all of us, not just those that fit tidily into the “disabled” category. When cities started adding curb-cuts for wheelchair users, people discovered that they were also quite handy for parents with strollers and vendors with rolling carts. When we allow disability to expand our thinking of how a space can be designed, we create experiences that prioritize comfort, access, and flexibility for all of us. In other words, accommodation can be integrated without compromising beauty or ease for non-disabled people.
Design*Sponge: You quote Eli Clare, “We need images — honest, solid, shimmering, powerful, joyous images — of crip bodies…” Where do you see yourself and your voice in that?
Rebekah: This call from Eli Clare articulates one of the driving forces behind my Instagram account. I started reflecting on this idea a couple of years ago when I bumped into a rather simple insight: my nieces and nephews interact with the image of my paralyzed body differently than kids I don’t know. When I move about in public, I’m used to the unrelenting stares of children. Their eyes follow me through the produce section and down the juice aisle as if I were actually flying with a sparkling cape whipping through the wind behind me. In contrast, my nieces and nephews climb over my chair and onto my lap as comfortably as if the frame of my chair were an extension of me.
This contrast is meaningful and uncomplicated. My nieces and nephews see me regularly. The image of me spinning on wheels in the kitchen, carrying a baby or a cake on my lap, or loading my chair into my car is so ubiquitous, it’s lost all intrigue for them. This is not the case with most people who see a body like mine moving through the world about as often as they see a white rabbit with a pocket watch. But this contrast highlights the power of representation. With this small insight, I became more conscious of how different it feels to be around those who are familiar with “honest, solid, shimmering, powerful, joyous images” of disability, and those who aren’t.
Because I want more people to be familiar with the image of strong, dynamic, ordinary people with disabilities, I started creating these images for myself. I was surprised to confront my own engrained impulse to crop my disability out of photos, and I have determined to include it as much as possible. I add hashtags like #cripplepunk AND #beautiful, #disability AND #cutecouple to highlight that these can co-exist. Each time I upload an image and hit “share,” it feels like my contribution to the vast ocean of non-disabled images coursing through the interwebs.
I believe that if we — all of us — can push more vibrant, nuanced stories of disability into our public consciousness, it will begin to create tangible differences in our communities. For example, I wonder — if the people in my city were more familiar with the stories of living life with a disability, would they have created more inclusive spaces for us to live by now? Would people feel less compelled to gawk in public? Would more disabled folks be employed or living above the poverty line? How might the world of dating and romance shift for us?
I believe that if we — all of us — can push more vibrant, nuanced stories of disability into our public consciousness, it will begin to create tangible differences in our communities.
Design*Sponge: We believe that all bodies are beautiful. What are some ways we can delight in our differences that do not encourage a victim/hero script?
Rebekah: The “all bodies are beautiful” mantra has nurtured in me a greater delight for the strange and inherent beauty, goodness, and worth our bodies hold. Part of the power of this refrain stems from its simplicity, but I think its strength will only grow as we learn to invite nuance and complication into the conversation. For example, I believe with all of my mind, heart, and being that every body on this planet is stunning simply because it is alive. At the very same time, somedays I look at my purple-gray feet and floppy belly and think, “gross — hide that!” Examples of these contradictions in me are everywhere. I believe that my disability has added an irreplaceable richness to my life, and I also resent the pain in my lower-back that keeps me from falling asleep. Some nights I feel entirely at home in my body — dancing and twirling and laughing without the slightest awareness of who’s watching — and some mornings I cringe, imagining what my dancing must have looked like to the people around me. All of these things are true at the same time, and I don’t think that means we’re failing. It means this is complicated — we’re complicated. Pretending otherwise doesn’t do us any favors.
As we move toward communities that recognize all bodies as beautiful, valuable, and good, I think it’s important that we don’t use this belief as another tool to erase ourselves or silence a subset of our stories. We are beautiful, and we are also messy and contradictory — we move in zigzags and loops — our stories don’t always fit nicely together like puzzle-pieces. We are never just one thing — a victim or a hero, healed or broken, happy or dissatisfied, enlightened or backwards. I believe that all bodies are beautiful, and I also believe that we are allowed to understand and appreciate our own beauty, when we are allowed to be all of ourselves at once.
We are never just one thing—a victim or a hero, healed or broken, happy or dissatisfied, enlightened or backwards. I believe that all bodies are beautiful, and I also believe that we are allowed to understand and appreciate our own beauty, when we are allowed to be all of ourselves at once.
Design*Sponge: How can we all work towards reshaping the cultural narrative on how different bodies are considered or ignored? What are some practical ways you see this happening?
Rebekah: The older I get, the more I understand how important it is that we listen to each other. I mean, open-handed, nurturing, genuinely curious listening. This is true for all of our human interactions, but when it comes to disability in particular, our collective voices are still so hushed and the assumptions about us are so deeply engrained. There are loads of ways to begin this work of listening. Subscribe to a blog or a podcast created by a person with a disability. There are so many disabled folks on Twitter and Instagram and YouTube using those platforms to discuss their insights on disability — follow them! Read disability memoirs and disability histories and disability articles — there’s now a section of The New York Times dedicated to publishing art, essays, and opinion pieces by disabled writers. As you let their voices wash over you, try your best not to clamp your fist over their words, forcing them back into a narrow category or rigid list of “do’s and don’ts.” Let their complicated, contradictory, honest stories become as familiar to you as family. Find ways to amplify these voices and share these stories. Spread them to your people. I think this is how we reshape our cultural narratives — by opening them up and letting them grow.
Design*Sponge: What are your goals as you continue to advocate, connect and share what it looks like to be a person in this world?
Rebekah: I’m just about to finish my PhD, and I’m hovering on the edge of what’s next — a terrifying, exciting place to be. I have some dream projects in mind — my cousin (who has a visual disability) and I are drawing up plans to start a disability-minded podcast together, and I’m eager to collaborate with other writers and artists to gather and share more people’s stories of embodied difference through print and online mediums. But when I think of the underlying drive I feel moving forward, I think a lot about myself as a little girl with poofy bangs, clunky leg braces, and a hot-pink wheelchair, slowly accumulating more and more shame in who I was. While my story is particular, it’s also common — there are a thousand different ways our bodies still invite ridicule, exclusion, or erasure in our communities. I want to help build more spaces that combat shame with celebrations of difference — where we shed our assumptions and learn to really see and care for each other.
I want to help build more spaces that combat shame with celebrations of difference — where we shed our assumptions and learn to really see and care for each other.