As I’ve made the transition from childhood to adulthood over the last five years, I’ve come to realize that ableism and well-meaning ignorance still stings. For a long time I viewed disabled experience as a marathon: if I just learned to pace myself and listen to my needs, then dealing with the world’s bullshit would be a skill I honed as time passed. Until eventually, I wouldn’t be upset by it anymore. Sounds nice, but “growing thicker skin” is an antiquated concept that gaslights the feelings of marginalized people. Such a mindset puts pressure on the individual to pull themselves out of negativity in a way that is neither realistic nor helpful. Despite having built emotional resiliency, one can only “bounce back” so many times. The key in coping for me, I’ve learned, is not bouncing back, but bouncing to something else entirely. If I can shift my focus to something structured enough that my attention is required, but open and abstract enough that there isn’t a wrong answer, the stress over heavy things like how the world perceives me or ability based barriers is abandoned in favor of this other option. My best ‘other option’ is art- specifically various forms of performing arts.

​Now, if you’ve been in the performing arts world for a hot minute like myself, you are tired of hearing about the “transformative power of art” or how “the stage saves lives.” While such narratives can border or masturbatory, I have found that I have an expanded capacity for the tomfoolery of ableds- both interpersonally and systemically- when privileged with the time and resources to generate a work of theatre or dance. That’s escapism, I hear in the voice of a girl that constantly condescended at Arts School #1. My response from the vantage point of the end of Art’s School #2 is, maybe so. Is escaping from what brings me pain really bad, though? Is it really an escape at all if ableist behavior will inevitably find it’s way back to me? No, it’s not. There is no shunning of an experience that is inherently tied to me. There is only living with it, and my ongoing choice in how to live with it. During instances of extreme struggle both mentioned here and omitted, I don’t have the time or resources to be creating anything, and the difference in my wellness is acute. When navigating oppression, I am unable to focus on creating, and slip into a shell of myself going through the motions just enough so the piling barriers don’t actually kill me. As I come out of the other side of that, intentionally participating as an artist is how I choose to consciously interact with experiences of oppression without losing my mind or sense of self. 

A couple of weeks ago, I was feeling particularly low right from waking up. I could hardly get myself dressed. All I could see in front of me was a day of ongoing micro- aggressions. But I put on my three pairs of shoes one piece at a time, and dragged my ass to a rehearsal for a piece I had plans to drop entirely. I was playing Ani, a newly quadriplegic Spinal Cord Injury survivor in the 2016 play Cost of Living by Martyna Majok. I had been recruited to do this for no other reason than because I am the only disabled actress at Arts School #2. Feeling tokenized and underwhelmed by the process while still simultaneously facing Big Ableism in real time, I already had one foot out the door. But then I went to rehearsal. And while the rehearsal itself was nothing particularly juicy, the opportunity to act: to make my own choices, to saying words on Disabled Feelings that I didn’t have to come up with, and momentarily trading my own drudgery for someone else’s, was cathartic. I left the room with the morning’s negative thoughts far away, and went on to have a fine day.

I further counter the escapism argument with the assurance that theatre, dance, and film training has equipped me with storytelling platforms to go through disability experience more actively, as opposed to turning away from it. In high school, I made a feature length film on disability not because I was an inspired filmmaker, but because I was a young disabled person who needed to engage someone about what I was going through. I set out to do this during one of the most emotionally desolate times of my life. I had been isolated and tormented by my peers in high school for three years, and struggled to see a life beyond. This project, which was supported by my school with allocated time and guidance, served as a literal refuge: I would lock myself in a room in the library for two hours a day and just edit and plan, edit and plan. I was nowhere near my tormentors; it was just me, my ideas, and iMovie. Maybe I was momentarily escaping, but I needed to in order to survive. And- I’m going to brag now- the result was a bigger and better confrontation of and commentary on my experiences than any altercation in the lunchroom could have been: The Souls of our Feet is a poignant and informative film that has been viewed by thousands across the United States. 

Now, four years later, I find myself in a similar position after experiencing a trauma at Arts School #2 that continues to manifest in strange and surprising ways. After living through several (~25) dorm fire alarms without the ability to evacuate, I had an idea of a movement sequence that simulates the experience of being trapped in a building that may or may not be burning. I recreated the sense of urgency and panic I felt without actually mimicking disability or an alarm. The story has a beginning, middle, and end, and I was eager to bring it to life. I began to reflect on moments in my life that had emotional poignancy for me, and translated them into movement phrases in my minds eye. I often picture dance to process, because as a person with limited movement, seeing movement on abled bodies allows me to go beyond my frame of reference, and is therefore most entertaining for me to dream up. Once I had three short stories choreographed, I realized that if I could generate just a little more, I’d have a show. I went for more abstract ideas: how could I represent my physical and sensory experience of having Cerebral Palsy? A dynamic group number featuring flocking against an overlapping drumbeat became a glimpse into overstimulation, and hard, jerking movements juxtaposed by the clean lines of a pas de deux paint a picture of spasticity. This Body’s Heart was born, and I committed to putting the production up as my undergraduate thesis. Now several months into directing the process, I couldn’t be more thankful for the opportunity; an opportunity that in actuality only revealed itself by way of the traumatic lack of evacuation. And when the school calls on me to continue cleaning up its mess, which is often, I can now draw a hard line and say “No, I can’t meet with you. I need to do my senior project.” When they push, and say it’s my responsibility, I push back and say “My responsibility here is to get a degree. The day I get paid to be here is the day that responsibility changes.”

At times it feels as though my life is a cycle of trauma and recovery: monumental ableism happens, be it personal or institutional, and then there is a brief period of rest where I am left to pick up the pieces, processing said monumental ableism before the next wave hits. That’s not a sustainable mindset, because it is fueled by fear. When I started creating again, I had new energy for my mental health. I made a commitment to myself that I would not immediately react the next time I’m wronged. My approach won’t actively change the wrongs themselves; ignorance is ignorance. The commitment is to believing that I really am not implicated in the actions of the ignorant. As a friend reminded me, “This is not ‘your shit’. This shit is happening to you.” Re: not getting paid, my therapist then added “You don’t have to respond [to the shit that’s happening to you.] You are not obligated to clean up the messes of others, even if you are at the center of that mess.” The truth of not having to do anything or be prepped and ready to respond, is liberating. Because art is primary to ‘fighting the fight’ only when I allow myself- force myself- to look away from the fight. 

The activists in my life reading this will say that there is a way in which the two can merge- that all good art is political. I agree that I can and should make political art. But navigating actual oppressive instances while making art (or otherwise feeding my joy) is impossible, logistically speaking. My abled, white, cis, wealthy, ‘liberal’ academic advisor at Arts School #1 saw my disabled, bright eyed bushy tailed freshman self, and was so enthusiastic about my making theatre of the oppressed (in small, non-profit settings) my entire career. She was only seeing my experience of oppression as a subject within storytelling, not a beast of responsibilities unto itself. Regardless of the subject matter of a production, producing art takes time and focus that I don’t have if I’m going through bureaucratic channels to achieve basic rights and freedoms. So if I want to do the former, I have to let go of the latter for a while. And why shouldn’t I? While I was working as a Case Manager serving folks with disabilities experiencing homelessness, returning to arts school was a choice I had in front of me. The other choice though, was to finish building the adult life I had started to create for myself; continue doing what so many had presumptuously called “God’s Work”; see my clients through to success; stay in my apartment; work my way up in my human services job with a regular salary, even if the work was squashing me. From the outside looking in, I was a perfect fit for the field. But I was not happy long term. I needed another option. 

I needed to give myself permission to let go of the strife in front of me and take the other option. So I left. I said ‘hello’ to Arts School #2, and (after some more instances of oppression), I’m learning how to pull myself away from the conference room with suits, away from the inbox full of carefully worded Emails, and instead find my way into a rehearsal room. It is radical to opt out of one’s own suffering, because in dire situations, there is no choice. But I reject the idea that constantly “fighting” is just my deck of cards. Come see This Body’s Heart in April to see the artist that was molded from advocacy, from the hard stuff and the “have to’s” - come see what I’m choosing instead.

Today, This is Where She Stands.

Sonya

“Your disability doesn’t define you” or “You are more than your disability” are phrases that continually follow me around. My disability does define me. My hopes, fears, decisions, likes, dislikes, empathy, and shortcomings can all for the most part be tied back to my experiences as a person living in the world with a visible disability and chronic illness symptoms. Why should disability be minimized? Baked in those sentiments is the subtext that disability is a bad thing. By minimizing disability, my whole self is minimized because the presence of disability impacts so much for me. The irony is that the same people who are so sure disability doesn’t define me actually love who I am a lot. The folks who see disability as a negative are seeing me and my experiences through a lens of ableism and struggle- an easy trap that I sometimes fall into, too. Because to be clear, disabled existence is full of struggle. It takes about five minutes of browsing Where She Stands to see that I’ve been exposed to some heavy stuff: Life threatening complacency at the hands of my college, sexual rejection, traumatic amounts of social isolation… you get the picture.  Nestled within a lifetime of disability, though, is a vibrant, unique upbringing and identity that I wouldn’t trade for the world. You just have to look at it with open eyes and an open heart. Social media has shown me that lots of other people with a wide variety of disabilities and chronic illnesses feel the same: #disabilitypride has been tagged in over 52,000 instagram posts, and #disabledandproud is tagged on almost 20,000 posts. 

The predominantly abled spaces I inhabit are constantly telling me not to be proud. Folks express this bafflement at my ability to navigate, or to be at all optimistic, many do not share stories about disability, and some refuse to say the word ‘disability’ altogether. Juxtaposed by intense erasure, it is of course possible that the strong sense of pride myself and others exhibit is an act of defiance. While I know that having pride in something that can be a source of pain might be seen as rebellious, my pride is genuine and for myself. It is based on a sincere love for the body I have and the life I get to live. The high points of disability identity are not necessarily such lofty abstractions as “sincere love for body and life,” though. There are kickass parts of being disabled that are mundane and fun that no one talks about because for those who see hardship, joy running parallel is confusing. But life is more complex than that! I can’t speak for the other 52,000+, but this is why I am joyfully disabled.




I Don’t Sweat the Small Stuff

Because my safety is generally precarious and ableism can feel larger than life, I tend not to react to inconveniences my abled counterparts are frustrated by. This was most evident when I worked retail, and my coworkers would complain about a rude customer for the rest of the shift. I got my share of embittered patrons too, but pretty much as soon as they were out of sight, our interaction left my headspace. In the scheme of my day, that moment was so incredibly small. And my own experience of wanting to lash out at individuals taught me that when someone is unnecessarily rude because they can’t find the particular baseball bat they’re looking for, there’s usually a pile of other annoyances and injustices behind that. Annoyances and injustices that ultimately, I am not responsible for as a Cashier at Dicks Sporting Goods. Perhaps my bar is set low, but unless my life, liberty, or pursuit of happiness is at risk, you’re not going to hear me whining.




Disability (and Ignorance) is Really, Really Funny

By way of muscle tightness and misfiring neurons, my movements are full of jerks and quirks. Jerks and quirks that have catalyzed a water bottle thrown across the room, slaps in the face, and food on the floor all at the most inopportune times. Nerves around crushes and accidental caffeine overdoses alike have resulted in teeth chattering tongue twistedness that is nothing short of ridiculous. Well-intentioned misunderstandings with abled folks about my specific abilities result in hilarious oversteps to assist me, and the mixture of curiosity and ignorance has resulted in some downright ridiculous, giggle-inducing comments, and even better opportunities for rebuttal. Responses I’m personally proud of to date: “God will fix you!”/ “Why, do I have something on my face?” ; “Why do you walk like that?”/ “Mindblowing Sex”.




My Crisis Management Skills are Fire, pun intended

Because I’ve been at the center of many-a-crisis, whether that’s falling, inability to evacuate possible emergencies, navigating sudden symptoms of chronic illness, or surrounding myself with other disabled people who are also prone to crises, I’m better equipped than the average 22 year old to respond to a variety of situations that fall under the label “crisis.” I’ve been the person to take charge when a friend was dangerously intoxicated, while others sat slightly paralyzed in fear. I’ve talked many people down from panic attacks, and worked as an intensive case manager for a year, in which my job was to literally walk into someone’s life, assess the urgent situation they were at the center of, and figure it out. In my particular body in this particular world, things can go from fine to unsafe at the pace and frequency of a light switch. I’d like to think I’ve done a good job of accepting that reality, and twenty years later I’ve picked up a few tricks on how to act fast and make judgement calls I can stand by.




My Voice (and Bullshit Detector) is Strong

People seem to think I’m an activist because I enjoy it- I’m constantly being sent more advocacy tasks and disability related causes as though taking down the world’s ableism is my leisure activity of choice. It’s not. But the upside of facing oppression and being forced to advocate for myself is knowing what injustice looks and smells like. In parts of my life that have nothing to do with disability at all, I’m unafraid to share my feelings and opinions. This means I’m often the only woman to speak up in a classroom with bulldozing boys, or the person to ask the make or break question at work that others are also wondering. I have strong communication skills, intuiting how to approach different people about various topics based on circumstances. Because man, have I found myself in the middle of some fucked up circumstances. I know how people speak when they have ulterior motives. This is not to say I’m perfect or prepared to confront a problem at any time. But I know when someone is playing me, and generally know what to say to stop the games.




Disability Acts as a Douchebag Filter

Navigating space with a physically disabled person in a world that is inaccessible takes a certain patience. Bearing witness to and holding oneself accountable for ableism takes a certain maturity. And being close to a disabled person in any sense calls for a destruction of bias, because history preaches isolation. All of that said, shallow, entitled, and embittered is not the profile that’s attracted to me. If someone reacts to my body or ableism insensitively, that behavior shows itself quickly and a friendship is generally not then viable. You either sink or swim. It’s likely that if a person has a problem with the ways I live as a disabled person, other "-isms" aren’t far away. Ableism is an indicator that that person and I are not a match even outside of disability, saving me from emotional stress later on. On the flipside, the folks that are a big part of my life tend to be more critically thinking, empathetic individuals that are particularly excited about my personhood and disability identity. Our conversations are really meaningful and our bonds are long lasting.




Abled Bodies Seem Super-Human

Because my disability is congenital, my standard for what is physically ‘normal’ and what capabilities are ‘typical’ are based on, and possibly limited by, my specific experience with Cerebral Palsy. So when I see abled people do things with their bodies that I can’t, it inspires a sense of awe in me, because I can’t even conceptualize embodying what I’m seeing, even if it is an activity accepted as unremarkable among the abled majority. This is more relevant for me in so much as most of my friends are actors and dancers by way of my own involvement in the performing arts. As a result, many can do things with their bodies that are viewed as exceptional. Witnessing my friends physical accomplishments allows me to understand the human body in an even deeper way. I’ll never forget when a friend said to me that when she looked over at me during a dance showcase we were attending, she was amused by my face because she’d never seen my eyes so wide or my jaw so close to the floor. To me, what I saw on stage was nothing short of miraculous. 




Part of a Built In, Worldwide Community

Re: disability informing many facets of my selfhood, disability is a cultural identity, just like that of ethnicity, religion, and sexuality. There are niche jokes, understandings, and practices shared among people with disabilities that span across differences in disability types, ages, and upbringing. When I pass another person with mobility challenges, we are likely to share a little nod of acknowledgement; a small gesture that says we out here. At that moment, our diagnoses or what brought us to that place at that time doesn’t matter. Similarly, students at my school who recognize me as a vocal individual with disabilities have gone out of their way to introduce themselves to me. Many have invisible disabilities that are objectively different from my own, but that difference is not super relevant, because they’re simply seeking another person who knows how it feels to present ‘differently’ and has to go through similar bureaucratic hurdles on campus in the day to day. As random as these introductions may seem in the moment, I do my best to make time for them, because I love knowing there are others in my vicinity that can connect to this specific and strange existence.




Meaningful Trust and Platonic Intimacy

I lean on my friends for things that abled people don’t have too. Once a person gets through the aforementioned Douchebag Filter, it takes a little longer for me to trust them with helping me with physical tasks, or to confide in them about what I face moving through the world as a disabled person. So when that trust is eventually established, the bond I share with that person is particularly strong, and there is a language between us for touch, assistance, and communication that is unique to that person and I, and enriches my time with that person on the whole.




Increased Empathy and Gratitude

Hopefully this one is self-explanatory. Because I know what it feels like to be on the receiving end of micro aggressions and prejudice, a lifetime as a marginalized person has made me particularly empathetic to struggle and marginalization on the whole. I feel I can relate to people with marginalized identities other than ability status moreso than with people who I appear to have more in common with on the surface. Disability forced me to deconstruct and reconstruct what ‘normal’ means, so I am more equipped to meet people where they are when their normal differs from my own. The result is an awesomely diverse group of chosen family and friends, because we’re connecting to one another on more substantive qualities than how we look or our age. For that and so much more, I am grateful. Because my day to day health and ability to perform is precarious, I don’t take the ‘good days’ or my capabilities- physical or otherwise- for granted. I get really excited every time I get to the top of a set of stairs, or see myself standing on equal weight in a mirror, or introduce myself to someone I don’t know, or successfully talk myself down from a trigger, because these are all things that I've lived without the ability to do. And all idiosyncrasies considered, I feel really lucky to have the body and mind that I do, because they allow me to do a lot of cool things! 




I have even more to say! Including: employable skills, logistical perks, esoteric medical knowledge, the fact that disability brings out the good in people, aaaannnd I know who I am; my sense of identity formed earlier than average. BUT this piece is already a lot of words, so instead of expanding on all of that, I’ll wrap it up. If you want to talk specifics about what I mentioned briefly, send me a message here. When I reference the struggle of living with disabilities, it’s regarding other people’s ableism, not barriers presented by my body itself. Sometimes I dwell on the former because it takes up so much space in my life. But ableism is ultimately the doing of others. It is someone else's energy, someone else's time. I remind myself that when it spills over into my energy and time. But that does not diminish any of what I’ve named here. I have faith that I can reclaim the usurped energy and time with a mixture of good people, intentional fun, and a strong sense of discipline. In short: Haters can’t kill my vibe.




Today, This is Where She Stands.

~Sonya