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Grid-Locked by Gratitude

“Stop saying thank you!” mused my friend after I thanked her the tenth time for pushing me in a wheelchair around the Denver Botanic Gardens. At the time, I did not have a chair of my own and felt self conscious about needing assistance, despite having lived with disability for twenty years. Where did that embarrassment come from? Disability Justice leader Leah Lakshmi Peipzna- Samarasinha points out in Care Work: Dreaming Disability Justice that it comes from a long history of disabled people being put in danger by abled institutions and inaccessibility. The idea that we are just lucky to be alive contextualizes every interaction with abled society. If we are conditioned to being shut out, forced to acclimate to an inaccessible world, then the bare minimum of acceptance or accessibility feels like a gift. Or rather, I was taught to be overly grateful for being “accommodated” because to the abled people providing or advocating for the accommodations, the accommodations are “extra.” Abled society does not seem to understand that the meeting of basic access needs is not “extra” because disabled people do not start on a level playing field- by definition, disabled people have needs in order to exist at a similar level of comfort and, dare I say, productivity, as our abled counter parts. In the most basic sense, I could not have gone to the botanic gardens like all the people walking around had my friend not been pushing me, but a cultural history of exclusion indoctrinated me that this was a special allowance.

So-called “gratitude” has long been a tactic to maintain the oppression of Sick and disabled people. Because ableism boils down to such basic rights as one’s ability to enter and use physical space, the “fight” of disabled people has historically been to participate in the public sphere in the most basic way. As a result, our “wins” are things like the ability to use a bathroom, ride a bus, understand a lecture, attend a movie. If and when we strive for more than the bare minimum, we are called ungrateful. “You got your bathroom, so why are you still whining.” Striving for actual disabled wellness- Big Disabled Dreams- are radical because our basic needs are already considered Special. This is reflected in every part of disability services: Special Education, Special Services, even the existence of the over zealous ‘Special Needs Mom’ says that we should be aware of just how extenuating parenting us is. An entire identity is crafted out of caring for our many special, special needs. God forbid we ever forget we are burdensome to our families. Well, ‘we’ is figurative here- my parents knew better than to bring that language into our house.

While I typically refrain from speaking in sweeping statements about the disabled community, vast and uncategorizable as it is, I’m confident every disabled person has been called or thought to be ungrateful by an abled person at one point or another. In the Obama produced Netflix documentary Crip Camp, a young Judy Heummann breaks down in tears while addressing a crowd of community members after finally getting section 504 enforced. “I’m just tired of being grateful to use a toilet,” she says. A similar example that I have is in achieving fire safety for residential students with disabilities at Purchase College. After several months of intense protesting and policy work, administrators tried to buy me out by building me an accessible dorm that allowed me to evacuate independently. Even though my personal situation was “solved,” the actual policy in place did nothing actively to keep students safe, and it was clear I was being placated. As I continued to push, one administrator said I would “never be happy” and should “just be grateful” for the minimal changes I had seen. In one meeting, when I pushed for a specific policy change, an administrator said that “nothing is perfect.” I responded that this wasn’t dining hall food- that if one thing should be letter perfect, it is fire safety. They did not like that I held an expectation. 

When I would come in contact with a problem at my school or in my program after my situation was somewhat resolved, I’d think “I should just be grateful I’m safe, can I really complain if my life isn’t in danger?” Yes, yes I fucking can. Both in my situation in college and Judy’s position with the enforcement of 504, the concept of gratitude is weaponized to halt advocacy and grid lock disabled people in our own oppression. To the oppressor “gratitude” means being content with what you have. When really, being thankful for progress and yearning for more are not mutually exclusive. I can appreciate my ability to get in (and out) of a building, and still want and need more out of life. 

Sometimes, the expectation of gratitude is on a macro level like that of Section 504 and fire safety policy, but it’s harm snakes its way into the mundane. Once, I made the mistake of bringing up personal care assistance to my parents- how lots of people in my newfound disability community utilized personal care attendants and were living full lives. What might it be like, I wondered, if I had personal care help? “But you can live independently.” The conversation quickly devolved into how I was ungrateful for the independent living skills my parents had imparted. Of course I am appreciative I can live independently- it is a privilege I do not take for granted. My interest in personal care help was about going beyond the bare minimum- that maybe life could be enriched if I wasn’t exhausted by spending an entire day doing my laundry and putting it away. My yearning to make that experience better does not diminish my gratitude to be able to do it for myself. Because if being disabled has taught me anything, it’s that being too prideful can and will hurt you. As a disabled adult, trying to keep up with abled standards and making sure everyone knows I’m Happy To Be Here was literally exhausting me. But as soon as my (gr)attitude was called into question, that history came to the surface. I did not bring it up again.

Last Spring, I was placed with two new abled roommates randomly. They seemed nice and communicated directly, so I told them about my ability status within sharing space right away. I explained I couldn’t clean a bathroom, but would hire another student to come in to do it. They insisted that was unnecessary and they’d clean it. I confirmed that a few times before thanking them and then told them to tell me if that changed, as I’d be okay to bring someone in. They said it wouldn’t be a problem, and maintained our bathroom without comment for the rest of the semester. Then, on my way leaving campus at the end of the semester, I received a volatile text in the roommate group chat clearly not meant for my eyes, detailing how I was ‘lazy’ etcetera for “never cleaning.” I let the ableist rant unfold a bit before confronting the girl individually, who quickly backpedaled that her complaint “had nothing to do with my disability,” but they were put off by the task, as I “seemed ungrateful” because I didn’t express my thanks after the initial conversation. There’s that word again. I explained I was not going to grovel in my own home. We had an agreement, and I left communication open for that agreement to change. For the first time, I thought to myself on that bus with tears in my eyes, maybe I am ungrateful. I’m ungrateful for all the presumptuous young abled people who take their ability for granted; I’m ungrateful for being made to feel lesser than; ungrateful that I’m expected to grovel to take up space; ungrateful that my personal expectations are so drastically lowered because I’ve internalized that to strive for more means I’m ungrateful.

The lowering of personal expectations is the unfortunate fall out of the gratitude complex that grid locks so many people with disabilities. I’ve refrained from initiating with people I’m interested in time and time again because I “should just be happy they want to be my friend.” I’ve bitten my tongue when I have a valid reason to dissent a popular opinion because I “should just be grateful to be included” in the discussion. I’ve accepted a lack of elevators because “at least I can climb stairs when I have too.” I’ve suffered in silence when my chronic fatigue and chronic pain are flaring around abled people because how dare I poop on the party I was so graciously invited too. I’ve suffered in silence when my chronic fatigue and chronic pain are flaring around disabled people because a little voice in my head says I don’t have it as bad, that to complain about my symptoms when bodily discomforts are the norm of the group, is to ignore how capable and privileged I am on the spectrum of physical disability.

As this long piece of writing demonstrates, undoing the gratitude complex is deliberate and challenging work. Choosing not to grovel at the feet of those roommates and viewing our conversation as an agreement was a big step in the right direction for me. Writing this and naming everything is another. But the most important antidote to the belief that disabled people should just be content with the (structurally oppressive) status quo, is to keep dreaming big: to craft an alternative in our minds eye that goes beyond the bare minimum, a world where our gratitude is never questioned because it is understood to be inherent; to name our wants with reckless abandon and then take them as seriously as we take our Very Special Needs. I want so many things out of this life, and I am simultaneously so incredibly grateful for everything I have. But instead of proving that to you, I’m going to force myself to keep dreaming, do what I can to leave my shame behind, and go get it all.

 

Today, This Is Where She Stands.

 

Sonya

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What I Love About Being Disabled

“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

What Didn’t Kill Me Made Me Weaker

I’m sick. And I’ve been sick for a long time. And I’m really over being sick. Like, really ready to be done. But I don’t think it’s actually going to go away, so I’m learning to live with my body, even when it does not feel like my body. 

For as long as I can remember, the label ‘high functioning’ has followed me around. To be high functioning means in the most basic way that you can do a lot of stuff. It means you can go into the world and for the most part, make do. In the context of disability, there are clinical measurements to determine if a person is ‘high functioning’ or ‘low functioning.’ I don’t like these terms because the point of relativity is an abled, neurotypical standard, despite the fact that the folks being scrutinized are not abled and/or neurotypical. And sometimes the point of relativity is other disabled people: a ‘low functioning’ prognosis means nothing without the existence of its ‘high functioning’ counterpart. Because I had a minor brain bleed as Cerebral Palsy goes, access to early childhood therapies, and parents that pushed me, ya girl hit a lot of marks that abled people looked at and call ‘success’: I eventually walked and talked and fed myself. I dressed myself and went to mainstream school and by many standards, live independently, blah blah blah. If I seem cavalier about it, it’s because these markers of so called capability are arbitrary. There are lots of people with lots of different disabilities who don’t do the things I listed, or do them with assistance, and live full, happy lives. 

On the flip side you can be a Supercrip, fitting into all the molds abled society asks of you, and actually be quite unhealthy. That feels like my story right now. I orbited in abled spaces for most of my life- I exceeded medical expectations over and over again; I was always looking on the bright side, and truthfully pictured myself as abled until I was 18 years old. As ridiculous as that sentence is now, its true. I was determined to ‘not let my disability stop me’ because along the way, I’d internalized ‘high functioning’ and its implications. I was warned the effects of Cerebral Palsy would shift or worsen in my early 20’s. Not because Palsy itself is a progressive condition, but because the physical impact of aging and pushing your body to do the most takes it’s toll when ones body “settles” after adolescence. I didn’t believe the warnings because in my young mind deterioration happened to other people, not me. And when you’re 14, 22 feels like a world away. But it’s not. It’s here. I’m 22. And like clockwork, my Palsy changed drastically around the time I turned 20. My muscles felt tighter, and a wheelchair went from a convenience to an actual need. Strobe and sudden light began to bother me in a way that is difficult to describe- I don’t seize or fall, but I get this instant headache and begin to tremble. Experiencing chronic fatigue could be its own post entirely. Physical and emotional exhaustion will overtake me, and I’ll feel something near a drunken stupor until I can take a nap. My tired is not your tired.  These symptoms were not at all present in, say, high school. As a teenager, I felt as far away from my autistic peers’ experiences of overstimulation as a neurotypical person. But as time progressed, my symptoms intensified, and new ones found their way into my days. Not only do I understand overstimulation now, but my social life revolves around it: bars are usually a no go, as are many concerts. Crowds and strobe lights can quickly go from uncomfortable to dangerous. At first, I would just tremble when nervous, shoulders shaking invisibly, maybe a knee tremor, the occasional teeth chattering. Now, my entire body will shake for anywhere from a few seconds to hours on end. And I shake when I’m not nervous about anything. It can happen anytime, for no reason at all. It’s completely exhausting and out of my control.

Tangential to the shaking is the vomiting. Oy, the vomiting. The stomach is a muscle, so when the stomach spasms, I immediately vomit. It started a year and a half ago. I shake, and then I vomit, or my stomach clenches out of nowhere and I just vomit. Sometimes, I go weeks without vomiting and think it’s “done” just for it to return with a vengeance. At first, I was sure I was eating the wrong things, so I experimented with my diet with no luck. Then I was sure it was anxiety, so I went to therapy and chipped away at every trigger I could think of. I found distance from those who stressed me out, used my chair more to decrease physical strain, ate as clean as I could on a college campus and again saw no change. Sometimes, I vomit with an empty stomach, waking up heaving and heaving until my body can no longer hold itself up. I’ve become an expert at vomiting discreetly in restaurant bathrooms, a sharp contrast from literally puking overboard a ferry when it first started. Often, food itself is a trigger, causing me to near-starve myself in an effort to avoid it. I didn’t experience actual hunger for over a year, and was sure I was going to die. Spoiler: I haven’t yet. As a general note, my chronic illness symptoms are not life threatening, though they can be life-lessening. I lost weight, which is hard for me to gain back because of the super fast metabolism from ambulating with Palsy. And I have hypoglycemia, so not eating consistently messes with my blood sugar severely. I think my sugar is fine because I don’t feel hungry, and then I’m hit with familiar hypoglycemic can’t-make-a-decision wooziness. I thought the vomiting was gone for good (again) when I was prescribed Baclofen, a common muscle relaxant for people with Cerebral Palsy. I take it faithfully three times a day, and the first three weeks were bliss: no shaking, no vomiting. I started gaining the weight back. The accompanying drowsiness and forced sobriety felt like a small price to pay. Then on week four, it all returned without warning, vomiting everything I ate and losing my appetite once again. Now, I’m waiting for my doctor to approve a higher dose, and I’m praying it helps for real.  I’m still trying a myriad of other things to address the spasms and vomiting and fatigue. I am seeing doctors and therapists and reading about food and medication. I am meditating and visualizing and resting. Suddenly, Palsy seems like more than a ‘leg thing,’ doesn’t it?

I’m learning how to live my best life while chronically ill. This adjustment is sometimes self explanatory in so much as my comfort guides my needs, but is often upsetting because I lived in another body for 20 years. I drank alcohol, danced freely, stayed up too late, and ate what I wanted when I wanted. Sometimes, my life doesn’t feel like mine. It is mine, and it can be good- it’s just really different. Having language and community for my experience allowed me to accept this. Chronic Illness is defined as “a condition that lasts for a very long time and usually cannot be cured completely.” That’s me, and also a lot of other people.

Thanks to instagram and Google, I stepped into understanding myself as a chronically ill person much more smoothly than when I learned I was disabled offline. Say what you will about Mark Zuckerberg and the looming threat of government surveillance, but social media and the accessible format of the internet provides endless community and crowdsourced information for anything you could imagine. There are many people who identify as chronically ill, and many of them are like me, young and navigating unpredictable health while pursuing careers and love interests and dreams unrelated to whatever symptoms they are experiencing. There’s an ‘us’ having good days and bad days, pendulum swinging wide and fast. “Chronically ch(ill)” reads countless bios, with profiles teeming with posts about everything from catheters to colostomy bags, feeding tubes to chronic fatigue. More than once have I received a nervous direct message from someone somewhere far away that says something like “I see you have spasms?… has anything helped?” Or “You wear a fancy brace… can you tell me more about that?” Or simply “Hi! I’m stuck in bed and you seem cool…want to be friends?” The platform provides a social space that does not require one to leave one’s home or one’s bed, or do a cost benefit analysis of the threats of the outside world, like overstim or fragrance or general inaccess. This combats the history of isolation Sick and Disabled folks descend from.

Many identify as “Spoonies’ deriving from the spoon theory. Spoonies are not a theoretical population with green, sad faces in the margins. We are every age, every gender, every race; we are partnered and single; we are writers and lawyers and line cooks and actors and insurance representatives and public workers and parents; we span states and countries and languages; some run marathons and some are housebound; some were abled last year and some will never know stable health. And even on the days we think our own bodies may kill us, we continue to live our lives. I’m lucky to know myself; to trade tips and tricks; to share my blog; to say “I’m still here.”

 

Today, this is where she stands

Sonya

Art as a Refuge

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

At a Crossroads: Femme and Disabled

For as long as I can remember, I’ve been femme. I was twisting tiny earlobes long before ever getting pierced; my outfits were almost exclusively pink from the years 2000 to 2012; and I gravitated towards makeup and red nail polish well before I was old enough to wear either. While femme is all those things for me, it’s much bigger than how I choose to clothe my body or a set of preferences. Growing up in a household that was a living thesis statement on female masculinity (Literally. In 2017 my sibling wrote their undergraduate thesis¹ on butch culture and female masculinity by way of my parents’ circles), femme identity gave language and form to my queerness that departed from the monolithic representation of lesbianism that I saw in my parents, my (now non binary) masc-of-center sibling, and most of their friends: short haircuts and cargo pants, hairy arms and legs, a pride and attraction to the messy, defined at least in part in character and history by being the antithesis of society’s idea of what a woman looks like. This is not to say there were no femmes in my life, only that I did not see myself in their expression of gender or lesbian culture. My hesitancy to come out despite coming from a queer household came from not yet knowing the word “femme” or that there was a whole, acknowledged group of queer women who looked more like me. Looking back, I think I first settled on the word “bi” not because I was actually bisexual, but because it was not the word “lesbian.” I could not be a lesbian because my parents were lesbians, and I was not like my parents. Already I had been infiltrated with stereotypes of what it meant to be gay- and was affected by a sense of tweenage rebellion- so much so that I forgot the actual definition at play: a woman who loves women- which, gasp, applies to both myself² and my moms. 

While I’ve changed a lot over the twelve years since I first grappled with queer identity, my femme identity has not only remained, but grown and expanded. My parents’ generation comparatively clung to labels such as ‘butch’ and ‘femme’ to create a language to speak their truth in a world determined to silence them. In categorizing something, you are naming its existence. In contrast, my generation relishes in the rejection of labels in post marriage equality America, where the simplified idea that “love is love” has been triumphantly mainstreamed. As such, words like ‘femme’ are now often seen as restricting more than liberating. Young people may read this and think “Why is being a femme so important to you? You’re putting yourself in a box.” To that I say feminine expression is a major part of my gender identity. Though I am cisgender, I am not a feminine woman just by default. If gender is a performance³, then I enthusiastically opt into femininity as means to take care of myself. Aligning with ‘femme’ is my way of embracing the hard and soft, it is batting long eyelashes while changing the minds of people who, like I once did, think lesbianism is limited solely to the butch archetype. Femme is ingrained in me. It is standing in my power. While femme is no one thing for any two people, and I am in no way emblematic of all femmes, I know how it manifests for me. My whole day feels better if I make time to put on makeup in the morning; I feel empowered in putting together an outfit that matches how I see myself that day; and I must have agency in and resources for specific personal hygiene practices to be a happy, fully functioning human being.

The topic of personal hygiene is where physical disability intertwines with femme identity for me the most. Because for as long as I’ve been femme, I’ve been disabled. At every turn in life as a physically disabled person, someone is ready to diminish the importance of personal hygiene. Struggle to use a razor? Shaving isn’t really that important. Can’t button that shirt? There are shirts without buttons. Eyeliner not happening in the face of no motor skills? You look fine without it. Having surgery? Spongebaths will have to suffice for now; who really needs to wash their hair that often, anyway? These are more obvious examples to make a point, but the idea that function always outweighs form wiggles its way into my life in innumerable ways. Abled society taught me to dress myself. But technically, once I’ve learned to put a T-shirt and sweats on, I’ve dressed myself independently. I must push to present with any bells and whistles. This was a big motivator for me in learning independent living skills: If I had extensive care wants, or wanted to pamper in a certain way, I had better learn to do it myself. Of course, modern disability justice teaches that having personal care help is a tool like any other4, but that was not an option presented to me growing up. That’s a separate blog post. 

So for all intents and purposes, I did figure out how to do it myself, with my parents watching to ensure success. Some of this process was similar to others my age: I poured over youtube makeup tutorials and went through phases of loud color combinations to learn how (and how not) to use makeup, and stabbed myself in the eye countless times before I could get that coveted black line on my eyelids. But then some of this process was specific to my having Cerebral Palsy: spending so long trying to button the same shirt that I’d cry out of exhausted frustration; grimacing at the frizzy texture of my Jewish Italian hair, unable to operate hair tools in the days before the straightening brush; constantly having stains on my clothes from food that became victim of spasticity; wearing ill fitting clothing not made for Palsy posture or bent legs; my mom insisting on standing outside the shower to ensure I was properly thorough in cleaning my hair; and of course, cutting my legs in early adolescence in an effort to get a close shave enough that I worried if others saw my bare legs they would think I was self-mutilating. For a long time, my outside presentation didn’t match how I saw myself because disability and abled society’s lack of inventiveness prevented me from the No-Hair-Out-Of-Place-Totally-Put- Together-High-Femme that I understood myself to be. Perhaps I craved that prim togetherness because it was so hard to achieve. Over time, I both relaxed a little in my femme presentation and adjusted to my disabled truth. I found hair tools I could manipulate, my mom gave me an electric razor, I learned how to minimize and accept stains, and found one standard makeup look that feels sufficient for all occasions, among other things. Unsurprisingly, that one look does not involve eyeliner.

Whether I’m receiving help in the tasks or not, prioritizing my bodily presentation by way of femme expression is a rebellious response to the people- mostly medical professionals- that knowingly or unknowingly strip bodily agency from disabled individuals. When I had my big operation at 14, I was arguably at my peak of needing to present a certain way. One of my first days post op, I noticed I was hairless as I transferred from the hospital bed. “They shaved me?!” I asked my mom as panic rose to the back of my throat. “That’s totally normal” my mom tried to reassure, “sometimes hair gets in the way. To doctors, it’s all just the human body.” Tears stung my pubescent little eyes as I processed feeling violated by an act that was apparently routine. Was that in the consent forms? Why had no one thought to tell me this would happen? Why was it assumed I would be okay with this? What if I had preferred hair there? I actually preferred that I was clean shaven, but the principal deeply shook me. After I had been struggling to shave myself, some strangers accomplished it in no time, without my even knowing. The time and energy I had spent trying felt ridiculous in comparison, and I was suddenly someone’s doll to make look however under the guise of medical treatment. 

Similarly, I remember going over daily living tasks with physical and occupational therapists and becoming increasingly offended as they suggested I omit or further space out parts of my routine like hair care or moisturizing or shaving or flossing or jewelry in an effort to save time and energy. To them, my getting out of the house was a goal most achievable if simplified. The bare minimum was success because said goal only existed on paper to them. Even the nicest engaged in dehumanization of my disabled self because my emotional needs (and certainly not my gender expression) were not factored into success with equal weight as the physical task at hand. They were suggesting things they would never apply to themselves, coming to work with necklaces clasped, clean shaven legs, and mascara painted lashes. That contradiction is privilege at work.

Fast forward a little less than a decade. I have made my peace with this history, otherwise I would not be publishing it. On the whole, I feel proud when I think of the care I take in my presentation. I decided what “femme” looked like on my own despite many physical obstacles. My spending the little extra time on myself is an indicator of mental wellness and self love. You don’t become invested in the presentation of or repeatedly go the extra mile for someone you don’t care about. So like, that’s great, right? I’ve reconciled how I express myself as femme and disabled. But like all identities, how I see myself varies greatly from how the world sees me. And in a world where heterosexual is the default and disabled sexuality is still often omitted, I am grappling with the meaning of my queer sexual identity. What’s the point of being queer if, because of how the world sees you, dating is compromised? 

People often equate femme women with straightness because homosexuality is still often associated with gender-variant expression. Because I don’t look “visibly queer,” straight cis men approach me as often as they would a woman that is actually straight, because I am defaulted as straight. Similarly in queer spaces, other queers assume I am straight because of how I choose to present. This experience is also called being “straight passing” because being passed off as part of the heterosexual majority keeps me safe in environments where queer-appearing folks are in danger of discriminatory violence and prejudice5. The downside of passing for straight, though, is that I am less likely to be approached, pursued, or taken seriously by queer women. Presenting as femme results in people externally questioning my queer identity because either consciously or subconsciously, I don’t match up to what “queer” looks like in the other persons mind. I get more raised eyebrows, more “are you sure’s” and more apologies than my aforementioned masc-of-center identical twin.

This assumption of straightness is then compounded by the erasure of disabled sexuality, where I am less likely to be approached, pursued, or taken seriously as a sexual or romantic participant simply because I am visibly disabled. Disabled people are seen by the abled majority as less sexual on the whole, so the idea of disabled folks having fully formed gender and sexual identities that fall outside the majority is often left entirely unconsidered. The ensuing “rejection” is seldom a cut and dry “I’m not attracted to you” and instead is laced with nuance of forgetful indifference or being overlooked- surprise when I come out or express interest in someone despite my sending strong signals (the most common); An immediate, rigid “friend zoning”; Being strung along in a non-committal middle ground of intense though undefined queer intimacy; or a conscious fear of touch and intimacy with my disabled body that is non-negotiably a dead end. After a series of such experiences, I am left wondering “what is the point of proactively identifying as queer if I don’t get to fully participate in queer experience?” Knowing who I am can feel all for naught if there is such little external encouragement of that identity in real time. If a femme limps in the forest, and no one sees her at the crossroads, is she really out there?

To abled readers, or to straight readers, this all might sound depressing. This is where I am in my own personal understanding (see: a crossroads). And it’s not actually depressing: I’ve come a long way from the child who imagined marrying a man because that was the only scenario in which I could possibly wear a pretty dress, or from a time I fully saw myself moving as abled in my minds eye. And no longer do I allow being desexualized to stop me from making the move, at least not most of the time. It is a powerfully defiant (though possibly insane) choice to go after what you want knowing the odds are historically stacked against you. So if you read this whole thing, I hope you push yourself to dig a little deeper about what may at first just seem depressing. My writing on topics such as this is part of my effort to dig a little deeper when it is tempting to become downtrodden or overwhelmed by the complex factors at play in life. Walk with me, think with me. This crossroads in the forest is a fine place to be.

 

Today, this is Where She Stands.

Sonya

 

 

Images of me living my best femme life (2019). Photos taken by Ruby Marzovilla.

______________________________________________________________________________

Butch? An Exploration of Queer Community and Female Masculinity, the undergraduate thesis of AJ Rio-Glick at Bard at Simon’s Rock College

I currently identify as queer.

Butler, Judith. “Performative Acts and Gender Constitution: An Essay in Phenomenology and Feminist Theory.” Theatre Journal, vol. 40, no. 4, 1988, pp. 519–531. JSTOR, www.jstor.org/stable/3207893.

Lamm, Nomy. “This Is Disability Justice.” The Body Is Not An Apology, 1 Sept. 2015, thebodyisnotanapology.com/magazine/this-is-disability-justice/.

5 Chimsky, Mark Evan. “The Power And Privilege Of ‘Passing’ As Straight.” HuffPost, HuffPost, 11 Oct. 2017, http://www.huffpost.com/entry/the-envy-that-dare-not-speak-its-name_b_59dcb080e4b0a1bb90b830db.

45 Things I’d Do If I Were Able Bodied

Someone is going to have a bone to pick with this post. Because it is taboo for disabled people to resent being disabled. And hey, I don’t resent being disabled on the whole. But I have thought more than once about what it might be like to be abled for, like, a week. Because who hasn’t? It sounds so easy. Abled people seem to understand in a vague way that disability can be hard. But they seldom make the effort to understand why. Disability isn’t some hyperbolized mountain to climb, but a series of weirdly shaped rocks that sometimes stab the bottom of your feet. A lot of the things listed here are things I *can* do, but not without excessive planning, assistance, and energy expenditure, and have more to do with widespread inaccess than my body itself. And even after all the planning and with the best assistance, the experience is often still limited. In a world that teaches that modification is key to the success of disabled people, it’s worth pointing out the labor inherent in the expectation to modify and automatically know what a given solution is. And sometimes I don’t want to modify or compromise or wait. I just want to do the thing, like every other 21 y.o out there. For example, I have studied ballet, but it’d be nice to participate more fully or take classes more consistently. I shouldn’t have to defend why I love being disabled for you to understand that part of being acclimated to abled society is being constantly reminded of all the things I can’t do. Because make no mistake, there are things that I- and all disabled people- can’t do. Hard stop. The sooner abled folks come to terms with that, the sooner real ability justice and access will be achieved, because there will be a widespread reaction to that fact that is based in realism and pragmatism rather than a reaction that comes from a place of idealism or erasure. To those who have the urge to respond to this with “It could be worse”: You’re right, it could. But you’re missing my point- it could be a whole lot easier, too. To be more specific, here’s 45 ways* in no particular order. Because a girl can dream. And complain.

*tried to come up with 50 ways…but was grasping for 45! Guess I’ve gotten used to the way things are.

  1. Go to the beach (and swim)
  2. Provide physical care for a sick person
  3. Have casual sex
  4. Make meals with more than one dish
  5. Drive
  6. Finish an acting program
  7. Clean my own bathroom
  8. Hit on a stranger
  9. Wear Rompers
  10. Live in New York City
  11. Eat spaghetti or tacos or chicken wings on a first date
  12. Go on more first dates
  13. Babysit
  14. Run for charity
  15. Hang lights/run spot
  16. Go to more concerts
  17. Study Ballet
  18. Make my bed
  19. Get CPR certified
  20. Hike a trail
  21. Get angry about minor inconveniences
  22. Watch fireworks
  23. Let my grades slip
  24. Wear cute shoes (heels!)
  25. Get everywhere really quickly
  26. Puddle jump
  27. Drink spontaneously
  28. Kiss them first
  29. Waitress
  30. Rollerskate
  31. Use tampons
  32. Try shrooms
  33. Pull an all-nighter
  34. Change my outfit midday
  35. Give birth
  36. Sit on the floor
  37. Shave regularly
  38. Wash my floors
  39. Sit at a bar/high top
  40. Try vegetarianism
  41. Speak with no filter
  42. Light candles
  43. Sing in front of people
  44. Woo someone
  45. Keep a low profile

 

Today, this is where she stands.

Sonya

What I Mean When I Say I’m Relearning to Walk

Earlier this month, I was fortunate enough to travel to Gig Harbor, WA to get the Exosym, a set of orthotic devices that completely change the way I move through the world, literally. Find out more about the Exosym here. For me, getting the devices came a year after discovering them, in which I applied, was approved, saved all my pennies, crowdfunded almost $12,000 over the course of several months, connected to providers and friends and others who have the devices, and dedicated myself to PT to prepare.

From the beginning I was told that if I wanted the devices, I would need to commit myself to a year or more of dedicated physical fitness and allow space for a sharp learning curve in what my body can and can’t do. Others with Cerebral Palsy refer to this period as ‘relearning to walk’. But what does relearning to walk at age 21 actually entail, and why are the results not as stark and immediate for me as they are for patients without CP? As you saw in the link above, the brace functions as an ankle brace with a strut system that diverts strain from one’s leg and repurposes that energy into one’s step.

For me, the panel on the front pushes my knee into complete straightness, an idea previously unfathomable, as Palsy kept my left knee in a permanent partial bend. Most who are correcting an injury as opposed to managing a congenital condition wear just one or two braces for pain management and stability. Myself, as well as some other patients wear two of such braces, as well as “knee sections” that attach to the lower brace and strap onto the backs of my legs with velcro. While everyone is different, it’s safe to say wearing all four pieces is rare within the community of Exosym patients. The knee sections provide increased knee stabilization, and act as a propulsion system, lifting me as I go from a seated position into standing, or up one step to the next. Part of the learning process is acclimating to standing straight- when I stand up, I can feel the devices pushing me into that final upright position beyond where I would typically hold myself in space. It’s like the last groove of a key fitting into a lock just before it turns. Another piece is allowing the rhythm my steps fall into when walking independently to naturally take place. There is an uncharted smoothness; a newly accelerated speed that if I’m not careful to regulate can read like a kid on a two-wheeler who doesn’t yet know how to use the brake. Most notably though, the whole system together elongates my entire posture, holding me up in an alignment that is closer to what is typical. No longer is my torso leaned forward over my hips, but sitting above them. My neck is longer, my shoulders back, and of course my knees are straight and my ankles supported, so I stand firmer and weight bearing equally between both feet is no sweat, where I previously sat in my hip and my right foot did 80% of the work of holding me.

All of these changes directly contrast the routines my body created over the last 20 years. With that comes growing pains, so to speak, as my body and brain scramble to reconcile this new, forced alignment. My back is over arched or hyperextended which contributes to back pain as I walk. My spine is like a piece of paper that was folded with a crease in one direction, which was then folded in the opposite direction to straighten it out. Now the paper lies relatively flat, but the creases are all over the place, leaving an awkward flex. The solution for this “flex” is integrating an arc in my back to address the hyperextension. But constantly forcing a change in one’s spine is awkward at best, and near impossible while walking and then of course having to think about other things.

The other piece that results in back pain, and the real determinant in how much I glean from the devices, is strength in my core and glute muscles. Ideally, everyone should support their movement from their core. When folks have joint issues later in life, it’s often a result of said joint(s) overcompensating for a lack of core strength or intentional engagement of that muscle group. This is to say that if someone needs a hip replacement, one likely cause is a formation of a habit earlier in life where they lift their legs from their hips in the absence of proper core strength. When thinking of if my core is “strong enough” it is only in proportion to my own body weight and mass; the goal is not a six pack or a certain number of crunches, but rather, an adequate amount of muscle engagement to support the movement of my legs with the added weight of the devices. So my process has to be two fold: strengthening my core muscles as is with a series of consistent exercises, but then also creating new “brain patterns” to eventually automatically engage my core while moving. Furthermore, my gluteal muscles were developed in a shortened position because of my aforementioned “bent forward” posture. They contorted to accommodate the way I stood, so although they actually became quite strong like that, now all three lengthened in a way that mirrors what is typical because of my straighter stance. Just because they were propped up correctly via a super-imposition doesn’t mean they can actually function like that all of a sudden. Again, there is a neurological retraining process, because my brain was only engaging in a limited way in part to fit the specifics of other effects of Cerebral Palsy. That remapping of the brain is the real work, because creating new habits when there’s already an existing, now inadequate neural pathway in existence for two decades is starting from scratch in a way that can only be compared to babies establishing their gait patterns the very first time they’re learning to walk. So to babies everywhere: engage that little core!! It’s easier to do it right the first time. It’s worth mentioning that this is actually my third time going through the process of learning to walk. My first was at ages 4-6, and then I remapped again at age 14-16 when I had a series of complex corrective surgeries.

The process of engaging all these muscles is complicated for someone with Cerebral Palsy in a way that is not true for a neurotypical person, because by definition, Cerebral Palsy is the misfiring of brain signals to the muscles. So trying to isolate muscle activity, much less force change against what a particularly stubborn brain has already established, is near impossible because you are working against misfirings and increased muscle tension (see: spasticity). This can manifest similarly to paralysis, where I have no idea if/when I’m engaging my muscles, or how exactly I’m supposed to make that happen, unlike how I “know what to do” to make my hand into a fist. In contrast, a person with typically functioning brain signals who puts on the Exosym comes in on day one with closer to typical posture, at least somewhat- developed muscles, and the ability to feel them flexing. By way of Cerebral Palsy, I can count the times my stomach or butt has engaged in a way I could feel over the span of my entire life on one hand. Because balance, coordination, and the ability to mobilize is all reliant on these muscles engaging simultaneously, neurotypical folks often strap on one brace and are literally off and running; the neural pathways they had set before the injury or onset pain condition come back to them without having to rewire much beyond acclimating to the sensation of the imposition of limited ankle flexibility. You can place abled alignment on a girl with CP, but you can’t actually take CP out of the girl. Spasticity, compromised sensation in locating my muscles, and muscle weakness resulting in poor balance are always going to be parts of my reality, though the brace now enables me to reach more within these limitations if I very deliberately address each one. I can have increased strength and balance, but that is while I’m unable to feel what’s going on, or engage on command.

This is the only part that made me cry in my two weeks training at Hanger Clinic. I stood with a resistance band strapped to my waist, attached on the other side to a planted apparatus behind me. I had to stand up straight while pushing against the bands pull, the only option to squeeze my butt to hold myself in a standing position. The trainer was watching my backside, saying “there you go” or “you lost it there”; “squeeze squeeze squeeze!”; “Oh, you just disengaged.” I grew frustrated quickly, because it was total guesswork on my part. I had no idea whether I was engaging the muscle or not, and his praise or critique felt entirely random. He was cueing me in the hope I would know what “correct” felt like, but that approach was rendered meaningless because I couldn’t feel anything. How was I ever supposed to intentionally use the elusive “glutes” to my advantage while moving my legs, if I couldn’t even feel a single squeeze while standing still? I felt embarrassed to be 21 and not know parts of my own body. I stood there, still pushing away from the band, growing tired as anything near a result felt further than ever. And what if this was just the way it would be, never able to feel a muscle that everyone else knew was there? Was back pain just my lot in life? I started to well up.

The trainer and the inventor, both of whom I worked closely with were patient and understanding, assuring me that eventually I would have more control. Even if, like others with CP, I can’t actually feel the difference. Like so much of this process, this concept of improvement that I may or may not be able to locate for myself is difficult to intellectually understand. But they are the experts who I continue to place my trust in. So I composed myself, and tried for my that muscle movement a little while longer. Eventually, I did feel the tiniest movements towards the top of the back of my thighs, and just like that, I knew I had a chance. I took the band off and had some water: I could relearn, but if this was a victory, then and only then did I fully understand the extent of the endeavor I had just embarked on, and that I was really truly starting all over.

Just in case new posture, accelerated steps, and discovering and building muscles I didn’t know I had the capacity to control weren’t enough, there is also an element of quite literally learning new foot placement, breaking down the mechanics of actually putting one foot in front of the other. It’s imperative that I walk heel toe, heel toe on flat ground; a pattern that comes more naturally to me on my right side then on my left, which creates the illusion that my step is in correct form even if my left heel stays just slightly raised off the ground. But then the rules change again on inclines, where I must walk on my toes on even the slightest uphill, and rest in my heels going down. And of course, there are rules for steps and turns that I previously didn’t ever have to entertain: to go down steps, the foot that follows behind the other onto the next stair has to hang half way of the step before I can go to the next, otherwise I could seriously injure my knee due to how I am held by the knees section. Where I used to nearly skip down foot over foot, my eyes are fixed on where my following foot is, and I have to stop and readjust with every step that I couldn’t throw my foot far enough out on the stair to reach over the edge. Similarly, I cannot turn my whole leg and torso to change direction in one movement, but must instead take about 5 tiny steps with both feet, so as to avoid twisting my knee within the brace.

Arc your back! While squeezing your core! And your butt! That you may or may not be able to feel! While picking up your legs and moving forward! That now have five extra pounds attached to them! Walk heel toe! On your left too! Unless you’re on a ramp, in which you must get up and stay up on your toes! It’s a lot to remember, and currently impossible for me to do all at once, resulting in frequent falls and frustration. This is up against the backdrop of my loved ones who don’t necessarily know that I’m thinking of all these details, but instead are romanced by the already evident improvements in posture and energy. Such a dichotomy is complex, because the encouragement is nice to hear and well intentioned. And it is impossible for everyone to understand everything, nor is it my responsibility or wish to censor people’s words or reactions. But that doesn’t change the imposter syndrome I am experiencing as I get used to being outside of the controlled environment of clinic, constantly confronted with my new inabilities and the dangers in navigating the world as it is. Right now, I often don’t know the answer to “What do you need”, which I’m realizing is an awareness the abled people in my life previously took for granted. I knew myself so well, that in almost every physical circumstance, I had an answer. Whereas now, at least for the moment, I am just as in the dark as abled onlookers, figuring it out with a sometimes risky game of trial and error.

That experience within itself is a good reminder that I actually don’t have to have all the answers, and that the expectation is a side effect of an internalized need to be SuperCrip. Also flying in the face of such a persona is the the fact that it’s taking me much longer to connect with a PT than I had planned for or anticipated, and I fall into a self consciousness surrounding everything I’m not yet doing. I’m trying to give myself grace here, reminding myself it is just three weeks into my first year in the devices. I’m lucky to have friends and family who are supportive of what the journey is in reality vs. expectations, and I am hoping I can embrace that difference as well.

I wrote this post with the hope of giving you, reader, more context as to the specific challenges of what some arbitrarily view as a curative measure. My Cerebral Palsy cannot be cured, nor do I ever want it to be. Nothing is that easy, and we all have to push against urges to simplify or dismiss the complex realities of physical disability and medical experiences. I am as excited about this moment as you are. If it doesn’t always seem like it, it’s because I have a lot to learn.

Today, this is where she stands.

~ Sonya

Exhausted by Oppression, Disabled Student Asks “When is it My Turn to Learn?”

If you saw my last post, you saw what was just one turning point in an all-consuming effort to be safely evacuated in an emergency at Purchase College. Since I posted that video three weeks ago, there have been countless more alarms, more meetings, and more Emails, each seeming to escalate a little more than the last. The long and short of it is that the plan of me calling someone just for them to call someone else does take too long, but the offices who hold the power to change that do not see the urgency, and legality, of the matter at hand. But this post isn’t about the logistical specifics; it’s about everything else. Because in the flurry to find a solution, the basic fact that I am at school in the first place to get an education gets lost. Even the most well meaning people- even other students- don’t hesitate to put more on my plate, not even realizing they’re doing it. “You could do this!”, “you should speak to this person!” The result of my trying to rise to this expectation, which is often one in the same as the expectation I hold for myself, is a level of social/emotional burnout (hehe- “burn” out…) that I’ve never experienced before.

If you’re an abled person whose response is to nitpick the details in search of a solution in an effort to be helpful, stop. Not only is it not your job to save the day, but it invalidates the work I’m doing. If you swoop in with specific thoughts of “why isn’t this being done”, you are presuming that in all my efforts, I just haven’t thought of it, and want to engage with you about it. Just like with a physical task, unless your help is solicited, keep your strategizing to yourself. Since your sudden need to “figure this out” is a product of your anger, you asking me to engage in your thought process, is asking the marginalized person in question to hold your anger. Furthermore, reverting to logistics is to deflect my own well-being, or lack thereof. To hear the stress someone is going through on such a large scale and your first question not be “how are you doing”, is to neglect that at the center of all of this is a single human being who probably just needs someone to ask how they are doing. Which really is the source of oppression in the first place: failing to see and treat individuals as human beings.

So how am I doing? Not great. There is a unique sorrow in being shown the people entrusted to educate you don’t care to do just that. And there is an exhaustion in that sentence having been relevant in my life three years before, and two, etc. When I first experienced discrimination in an institution of higher learning around this time of year three years prior, my thought process was “I just have to get through this, and then I can refocus on what I’m here to do.” So I went through the process, sitting through meeting after meeting where I was expected to walk professors and administrators through educating me. And then there was another instance, and then a new study abroad option was not made accessible, and I was told to Email someone to inquire. I left the school. I left knowing I was not reaching my potential, with no one within the school reflecting that maybe they were the problem. This was despite my going through all the motions I was told to reach success: study hard, ask questions, get good marks, get the internships, read the plays, see the shows. At the end of the day, I lacked applied knowledge my peers had, because large chunks of time were spent carving out a space for my disabled self.

And now all this time later, at an entirely different institution, I find myself in the same place: a model student, motivated and ready, unable to fully grasp the opportunity in front of me because all (and I do mean all) of my emotional capacity and time both in and outside of class hours are being called upon to meet basic safety needs. Tell me: How am I supposed to pay attention in class when I got 4 hours of sleep after thinking I was about to die in an emergency the night before? How does one lean on student support services when multiple administrative offices won’t answer the most basic of questions about policy that should already be in place? How do I network with peers or go to extracurricular events when I’m barely able to turn in assignments? When do I study amidst 7+ meetings a week that have nothing to do with academics? Where is my mental health if I am expected to maintain composed in all of these communications, despite being given reason to be scared and angry?

Anger is a privilege. People can only express anger when they know it won’t hinder their success, and when they are removed from whatever it is they are reacting to. Take Brett Kavanaugh, for example. His belligerent performance at the recent hearings were only passable because he knew his privilege would protect him. He had space from the issue, because he wasn’t endangered by his actions or the thought of sexual assault, so he could react however he pleased. It was Dr. Ford who was expected to remain composed, carefully planning each sentence so as to present objectively despite the horrific, intensely personal memory she was recounting. If I show anger within my own advocacy, my credibility is suddenly questioned. “You’re emotional” is used to suggest that feelings get in the way of legitimacy. I know I can present facts and figures just as accurately when I am “feeling things”, but I also know not to show when I am angry, because that is taken as a reason to write off what I am saying. My abled friends are outraged by my experiences of oppression because they can be. I’ve been taught that there is a time and place for anger, but that time and place won’t serve me.

But I am angry- infuriated, actually. I’m angry that everyone around me seems to be soaking up new information and experiences, while I am forcibly stuck navigating versions of the same thing over and over again. I am angry I am not respected enough to respond to in a timely manner until parents get involved. I am tired of always feeling like the friend with the depressing status update; the strong friend; the girl who “has been through a lot”. I am angry I am so vulnerable. And I am angry I am hitting my own glass ceiling, even though I can see the sun shining through from the other side. As I’ve touched on before, I am only as prepared for the “disabled experience” as much as the next 21 year old. Each time something like this occurs, I am surprised and angered even if this is just one of many experiences of oppression, and even if I have learned not to show my anger.

When I turned 19, I got a tattoo on my left leg that reads I am as I am. It serves as a reminder in times like this. I may know that I am as I am, but when do I get to experience an education “as I am?” The jury’s still out. Recently, as I strategized with my academic advisor, who has been my number one support “on the inside,” I started crying when she showed me a museum exhibit nearby. “You should go!” she said excitedly. “When?!” I said, louder than I had intended, hot tears streaming down my face all of a sudden. There are so many art installations and plays and films and concerts that I just can’t get to, because I have to stay here and ride everyone’s ass to make sure I can get out of my dorm and around campus. “Oh.” she said, fully taking in who sat in front of her. “It’s still in you. I can see it.” she said. “And I think this may actually be coming to an end, as hard it is right now.”

So today I am choosing to put faith in that this will come to an end, while leaning into my anger that it is only a matter of time until the oppression weed sprouts anew. I am holding onto the possibility of a world where oppression, my anger, and myself “as I am” can coexist.

 

Today, this is where she stands.

~ Sonya

Systemic Oppression as Explained by College Fire Alarms

Since I began the school year at the end of August, I have been sent on a wild goose chase to understand my school’s emergency evacuation expectations and procedures for residents with physical disabilities. After about six weeks, I finally got some answers. The amount of time and energy required for me to spend on this is an example of systemic oppression. Because in the same time I spent in crafting a safety plan abled people don’t have to think about, those same abled people were studying, socializing, working etc. The ongoing expectation for disabled people to spend exorbitant amounts of personal time, energy, and capital to simply exist in abled society, is oppressive in ways that reach far beyond the issue itself. Telling disabled people they should accept compromised safety, as I was over the course of understanding this plan, limits one’s well being and physical ability to thrive on the basis of disability.

So many people’s eyes glaze over when they hear systemic oppression. But it’s not some lofty, far away concept. I come in contact with it whenever I’m interacting with an institution that asks me to abide by policies and procedures crafted exclusively for abled bodies. Give the video a watch- the whole story in all it’s complicated glory was too much to write, so I switched things up this week and made a video diary*. Let me know what you think of this as opposed to the typical blog post. Have thoughts and feelings about my fire alarm experiences? Your own comparable saga? Share it here.

 

 

Today, this is Where She Stands.

Sonya

*I did not have the capacity to provide captions/a transcript for this video, and apologize and acknowledge that this is not truly inclusive. If you know of affordable tools to help me change this, please let me know here.

It Got Better

Three years ago right around this time, I was diagnosed with Post Traumatic Stress Disorder as a result of repetitive gaslighting, harassment, and social isolation at the hands of my peers over the course of my four years of high school. Reconciling this diagnosis and understanding my psyche has been and continues to be a journey. To honor that journey three years later, I wrote the following letter to my younger self, who for the intents and purposes of this post is just beginning sophomore year. This is an effort to confront a part of myself I’ve distanced myself from, because it’s time I got to know that experience for what it is now that I’m on the other side of the subjective rollercoaster that is psychological trauma. A victory letter, if you will:

Dear 2012 Sonya,

Hello there. Yes, you, in the white polo and plaid kilt. You’re tired, I know. So tired you might not have it in you to hear my voice. Your voice. I know I haven’t been around. I know that when I shed the uniform I shed you too. In our sophomore year of college, when stuck on what you are going through, what we went through, my roommate said “what if you showed love to that part of yourself- what if you loved her?” I didn’t know how. I didn’t know how to love you. And maybe I still don’t, but this call to you is some sort of beginning, some prologue that hurts as it stretches out the past and hangs itself dry in the center of my gut. I want to say sorry. Not because of something you or I did, but for what everyone else didn’t do. I’m sorry those girls are so horrible to you. I’m sorry nobody is doing anything; will do nothing. I’m sorry it is so repetitive. I’m sorry about how they look at you, talk about you. I’m sorry they don’t look to you, talk to you. I’m sorry about the scream sitting in your throat, I’m sorry you can’t let it out. I’m sorry it’s so hard. I’m sorry everyone is telling you it’s in your head; your control. It is not. I’m sorry there’s no waking up from this, no simple path away. I’m sorry you are the only one who moves the way you do. I’m sorry you are made to feel dirty for it. I’m sorry you are silenced. But mostly, I’m sorry you are alone. You deserve better. And I’m here to say it does really truly get better. I’m going to tell you about now. About later. About a life beyond invisible. Because there is life beyond invisible. And I know you can’t see it, don’t believe in it. But I can, and I do.

Everything is different. So different that I don’t even know where to begin. For starters, I laugh everyday. And not just at stories you tell yourself. But out loud, big expressions of joy brought on by friends. Yeah, real friends. They walk with me. By my side. They ask how I’m doing, because they care. It took a long time and a lot of therapeutic hours, but I no longer wonder if it’s real, worried how long I have before they evaporate into thin air. Now, I live in a world where I can tell others I’m tired. There’s no faking what body can do. I live in my vessel fully. I use a wheelchair. And a crutch. I know that freaks you out but please try to trust me when I say it’s empowering. I choose what I do with my body, and when I do it. It’s this huge job that is sometimes terrifying in its huge-ness, but we’re doing it, and we’re doing it well. I stand taller, when I choose to stand. I flirt and flirt and flirt; I know myself entirely separately from who your classmates think you are. Which I know is who you think you are. I’m sorry that is the only person you know yourself to be. I’m loud, and I am soft. I don’t think quite so much.

There are still residuals of your experience held mostly in my chest. I apologize more than I need to, for things that are not our fault. I have to remind myself to choose trust; to go with the flow; to not run away at the first signs of exclusivity. I am safe. And I am still working to believe that. But at least I can confidently say I believe you. I believe everything really did happen. I believe all the lunches eaten alone, all the bathroom tears, all the times you were talked over, stepped on, the recipient of an eye roll, the walks alone, the averted eyes, being blatantly ignored, and then wondering if you are really there, the struggle to understand why, the struggle to be heard in that struggle, the unwillingness to get out of bed; the unwillingness to walk into school in the morning, the weight you feel leave you when you walk out and see mom smiling at you in the car, and the weight that returns the next day when you have to go through it all again. And I am writing this to you now because it didn’t go away as soon as we graduate. It is as real today as it was then.

I am being intentionally vague in how we got here, the events that led me right to this triumph, because if time travel is at all real and you get a glimpse of this letter in some fever dream or daydream about a life beyond the polo and blue kilt, I don’t want my hindsight to affect your foresight. Make no mistake, we got here because you did the work. You cried and spoke and screamed and questioned and loved yourself and stuck it out, when maybe we wouldn’t have if you knew all the details of what was still to come. But I will tell you one thing, we have best friends. True blue, here-for-the-ugly, laugh ‘til you cry best friends who I know the ins and outs of, the day to day schedules of. A strange and bold concept to you, no doubt, with your supports right now so far away geographically and held at arms length. But that golden thing called friendship won’t always be so distant. There’s one in particular that I just can’t wait for you to meet- a forever friend, if you can believe. I told her about an ableist thing said to me, because she has told me to trust her, and I did. She said “You are working so hard and I see it and want you to know that I see it.” I see it. I see you. I’m seen. I’m heard. I’m here.

With love and Solidarity,

2018 Sonya

P.S- We will learn that so many people are going through versions of exactly what you are. So many, in fact, that a whole musical was written about it. It’s called Dear Evan Hansen. These are lyrics to a song called Waving Through a Window: “On the outside, always looking in. Will I ever be more than I’ve always been? ‘Cause I’m tap, tap, tapping on the glass, I’m waving through a window I try to speak, but nobody can hear. So I wait around for an answer to appear While I’m watch, watch, watching people pass I’m waving through a window, oh Can anybody see, is anybody waving back at me?” I hope you find solace in that, as I have.

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Me, newly a high school graduate in June of 2015, four months before I would be officially diagnosed with PTSD and social anxiety.

Today, this is Where She Stands

– Sonya