I hope Rebekah’s words reach every corner of this globe. May her story fill you with
compassion, for yourself and for others.
What are your thoughts on body positivity?
To me, “body positivity” means that the tape that plays through my brain from moment to moment says more kind things to my body than unkind things. “You are strong.” “You are lovely.” “You are resilient.” “You don’t look like the bodies on that screen or magazine page, and that is more than okay.” “You are turning that burn into a scab, that scab into a scar, and that is magic.” “That scar along the length of your spine is a badge. You have fought some fierce battles, and look! You won!” These thoughts are the sort that lead me to feel acceptance, affection, admiration, and gratitude toward my body. I think “body positivity” also means that I listen to and respect my body when it tells me things. “I am hungry. Feed me.” “I am exhausted. Let me rest.” “My heart is racing. Acknowledge that I am anxious.” When I listen to and respond to these thoughts, I feel more aligned, more peaceful, more settled in my body.
What role has body image played in your life?
When I was about three years old, I was paralyzed by malignant tumors that had wrapped themselves around my spine. In other words, as long as I can remember, I have had relatively shriveled legs with limited sensation and mobility. I have also had scars scrawled over my back, ribs, hips, shins, and feet. Without the capacity to process or reflect on my unusual shape/abilities (I was such a tiny person when my body went through these initial changes!), I grew into a woman who felt shame in the image of her body and actively worked to ignore thinking about it. I remember the first time I saw video footage of my paralyzed body. I was fourteen years old, wearing a bathing suit and sitting in the sand next to Lake Michigan. Instead of seeing my smile, or recognizing the loving arms that had carried me across the sand, or remembering the way the sun felt on my shoulders, I froze in horror; my eyes glued to the image of my asymmetrical frame, my muscly shoulders and disproportionately narrow hips. Did I really look like that? I was mortified.
For years, I tried to find ways to hide my body’s particularities, obscure its differences. I felt like my body’s limitations were something to conquer, so I ignored its requests for rest or gentleness and felt like a weak failure when I couldn’t keep up. It’s important to note that this shame and resentment I felt for my body did not stay contained in one narrow category of my life; it leaked into all of the thoughts I had about myself. I saw myself as incapable of living on my own, getting a job, having a romantic relationship, or contributing anything worthwhile to the planet. This body shame can become quite a powerful force, no? It’s taken years of therapy and lip-biting effort to change the way I look at my body, and, by extension, my entire self.
What challenges have you faced related to body image and how have you overcome them?
It can’t help that the bodies admired and celebrated in the world around me look nothing like mine. Nor can it help that the representation of bodies that do look like mine are almost exclusively depicted as something “other.” Asexualized. Infantilized. Victimized. Aggrandized. Skewed into something wholly pathetic or entirely inspirational. The images around us do a lot of work to tell us who we are and who we should want to be.
One small and meaningful way I’ve found to resist this overwhelming barrage of images is through self-representation through social media. When I started my Instagram account, I was looking for some way – any way – to participate in what sorts of images representing bodies with impairments made their way into the world. I wanted to create and find really beautiful images of scars, paralysis, asymmetry, and deformity. I wanted more nuance, more celebration, more room for contradiction. While the experience of creating these kinds of images myself has filled me up, I’ve been floored by the other people on Instagram who were already doing this kind of work; their accounts are the most invigorating, glimmering, sturdy resistance to disability stereotypes and tropes typically found in mainstream outlets. Creating and connecting over these kinds of images has been a potent antidote to the cultural narrative typically told about bodies like mine.
If you could write a note to your younger self, what would it say?
Hello, little wonder.
How are you today? What feelings are beating behind that rib cage of yours? What is making you afraid? What is making you feel small? You seem so far away, and yet, I can feel your distress from here – your relentless fear of being seen and found wanting. Would it make a difference if I told you that I think you are stunning – exquisite like a mermaid? That I’ve discovered you are resilient – strong as steel plunged 1000 feet into the ground and rising 1000 feet into the sky? Would you believe me if I told you I’ve found others who see this in you, too? That the ones who see you as small and unworthy don’t matter so much? My guess is that you’re not quite ready to receive this yet. You’ve got some brutal years ahead of you, kid, and they’re going to teach you more than you can imagine. But I swear to heaven that, at the end of all of it, you’ll find the space where you are allowed to feel all that you feel, where you’ll experience comfort and joy, where you’ll be made big again. You may not be able to imagine that place yet, but it’s coming, darling. It’s almost here – hang on!
How do you encourage body acceptance or positivity amongst others?
I think that accepting your own body – and actively demonstrating that acceptance – goes a long way toward cultivating body acceptance in other people. Sometimes I think we don’t even know what body acceptance looks like. We’re used to hearing relentless self-criticism, seeing the constant pursuit of perfect angles and filters and the lists of magic foods or clothes that diminish our imperfects. It’s actually jarring to encounter those people who are settled, accepting, fine-as-they-are. The ones who don’t say harsh words about their endless deficiencies, don’t cringe when they see the photo that caught the moment they were laughing so hard their face turned red and splotchy. They are the ones who relish in the joy of that face, who allow themselves to be seen dancing like a fool. And sometimes they revert to a place of inevitable insecurity, because of course. But when they do, they see it for what it is – maybe not right away – this takes time! – but eventually, they do – they remember that they are made of the stuff of miracles, a body no more and no less magical than the caterpillar in her cocoon. I’m learning to live from that place by watching those who model it for me.
If body positivity was a recipe, what would the ingredients be?
Do you have a favorite body image quote?
“And I said to my body. Softly: ‘I want to be your friend.’ It took a long breath. And replied ‘I have been waiting my whole life for this.’” – Nayyirah Waheed
“Your body is the house you grew up in. How dare you burn it to the ground.” – Sierra Demulder
What are your favorite ways to practice self-care?
Cuddling with my chunky kitties, my ear close to their warm, purring bellies; sitting in a giant recliner with my two year old niece as she “reads” stories to us; whipping the fluffy cloud of egg-white batter for an angel-food cake; listening to my ladies sing their hearts out (namely, Dar Williams, Regina Spektor, Patty Griffin, Deb Talan); bubble baths and candles and red wine and microwave popcorn and Freaks and Geeks.
Are there any body parts you have struggled with but now accept and/or love? How did you learn to love these parts of you?
Like most people I know, I could rattle off a list of every “imperfection” on my body from the weird age spot growing on my right cheek to the jagged, red scar running along the top of my big left toe. The more time I’ve spent with my body, however, the more the meaning attached to each of these body parts has shifted. Instead of seeing my body as an object held against an “ideal” image, always found deficient next to the one perfect size and shape and proportion, I’ve come to see my body as a record of stories – so many brutal, radiant, powerful stories. For example, I have a pretty large nose. When I was younger, this plagued me. I found 1001 ways to make it look smaller in photographs, and resented it as the part of my face that would forever impede my shot at being beautiful. Now I see my nose as a connection to my family, keeping me close to my father and his father, and a whole host of ancestors I’ve never even met who share this slice of DNA with me. I used to wish my scrawny legs could be full and firm; now I thank my body for fighting like a badass princess warrior, battling to hold on to the bits of nerve endings that remain after her brawls with cancer and chemotherapy and radiation and invasive surgeries. I used to see my scars as embarrassing deformities; now I look for tops and dresses with scooped backs to display the map of my strength. And so it goes: respect instead of embarrassment, affection instead of shame.
Do you have a body image role model? Who is it and why?
I’m enchanted by Aimee Mullins. The woman had both of her legs amputated when she was quite young, and now she is an athlete, actress, fashion model and TedTalk superstar. The thing that draws me to Mullins isn’t necessarily her tremendous accomplishments in the world of sports and modeling (although, she’s worked hard for those successes, and good for her!). I’m much more drawn to the way she sees her body (and the bodies of those categorized as disabled); instead of viewing her missing limbs as a deficit – something to hide or normalize, she sees this part of her body as an opportunity for magic, a place for imagination, a chance at more. Through the variety of whimsical prosthetics she wears (e.g. legs made of solid ash, intricately hand-carved with grape vines and magnolias, legs that look like they’re made of glass [actually made out of bowling ball material], and legs that look like jelly fish, and so on), Mullins has shifted the conversation about the “deficits” of impairment into a dialogue about potential. While she doesn’t wear these extravagant kinds of legs every day, she views her body with curiosity and openness. I want to be more like that.
Rebekah is a writer and a teacher pursuing her PhD in creative nonfiction and disability studies at the University of Kansas. While she writes long-form pieces about her connection to disability, she also has an Instagram account, that she uses to 1) reflect on what it means to live as a woman with a physical impairment, 2) connect with others who are also processing what it means to live from a particular body, and 3) share more beautiful, nuanced photos of a body that looks and moves differently than most.