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

I’m Sexy and Disabled: Now What?

Every time I approach a topic for Where She Stands, I put it through a list of pre-screening questions. Is it relevant, do I have enough to say to write about it in length, etc. One such question is How do I feel about the possibility of a future employer seeing this? A love interest? This post is the first where that thought has really stopped me in my tracks, so to speak. For this reason, this piece has been a year in the making. I feel strongly enough that sex and sexuality is important to put voice to, specifically my sex and sexuality as a physically disabled woman, that I am ready to face those repercussions should they arise. And honestly, as a single full time student, neither of the aforementioned entities give me much of a fright at the moment. So, I’m going to throw caution to the wind and publicly write about sex, the lack thereof, and the ‘why’ behind it all. Breathe, Mom.

I’m going to be very transparent about the fact that, like most (young) people, I am still very much navigating and learning about my relationship to sex, sexuality, and existing as a sexual being while living in a gender and ability status that is historically objectified, fetishized, and erased. This piece is in no way representative of any other person’s experience, nor is it likely to still be representative of my own in a year, two, or five from now. As a reader, give me grace in this vulnerability. If this makes you feel something, fantastic! That’s part of what I’m trying to do through this platform. But in those feelings, remember there is a real woman behind the words and anecdotes.

Okay, now that we have that ~housekeeping~ out of the way, let’s get into it. I cannot talk about sex and disability without first venturing into the even more abstract topic of self love/appreciation/recognition. There is this overly-romanticized idea of the magical power of self love perpetuated by abled-bodied people: “If you love yourself, others will follow.” That is some malarkey created by someone who has experienced very little rejection. I do not mean to equate love to sex, but there is a parallel here; the idea that if you find yourself attractive and sexually capable, you will naturally exude such vibes and others will just as naturally be drawn to you and your abundance of sexual confidence. This is not my experience as a person with a physical disability. It took some time, but I really love my body, and feel sexy in how I choose to present and relate to others. I enjoy wearing a tight dress, a good bra, lacy underwear, the like. I’ve found a rhythm in my unique gait, knowing my body in its teetering femininity.

But I can love myself as the day is long, and that appreciation and attraction is not reflected in the world around me, locally and globally. This is jarring. It’s the difference between being told I look ‘pretty’, verses being thought of as ‘hot’. Furthermore, it’s the difference between someone thinking I am hot, and actually making a move. I’ve been fascinated in how people get from point a to point b since middle school, because I never seem to get to point b. What I learned though, is that it isn’t me failing in some way to move things along; it was the other person who had internalized ableism going on. I say that with kindness and understanding: disabled people have been historically desexualized in media to the point that the idea of having sex with a disabled person is still considered scandalous to even the most progressive. There is this fear of hurting me with touch, even though my body has transcended more physical pain in it’s first 20 years than some abled people do in their life’s entirety. I just happen to be on the receiving end of that manifestation of fear and stigma.

It does change how I see myself, because I begin to see myself through that person’s eyes; that lens of ableism. More simply: I can know I’m looking fine as hell in my mirror in my room, and then step outside in the presence of ableds who dismiss my sexuality, and suddenly don’t feel so worthy or ready for that either. I accept being seen as platonic because of course, says that voice in my head, the hot girl across the room has other, more graceful options. Apparently I am not the only one that feels this way, where solid personal confidence does not translate to sex and dating. In her Ted Talk, Dr. Danielle Sheypuk says “I talk about self-esteem versus dateable self-esteem. Dateable self-esteem is a term that I came up with to address the phenomenon that I frequently see in people with disabilities, and that’s the fact that we do love ourselves. We have fabulous social circles, great careers, and loving families. But when it comes to our self-esteem, our dateable self-esteem, it’s in the gutter. I mean it takes a hit...I [also] work with my clients on feeling sexy, and taking the focus off the disability, per se. One time I asked a client: “So what do you find sexy about yourself?” And I was expecting a quick answer. She looked at me, looked down, thought, thought about it, looked up, and said: “You know, I don’t know. I’ve never thought about that before.”…So people with disabilities, it’s not that we’re not sexy, it’s just that we haven’t been told yet.” In my case, I have been told. By people who still won’t cross the line into sexual touch or allow themselves to see me as an option for them, despite what they may be saying or thinking (or looking at), or the consent I may be giving. In such cases, words mean little. It reads like disabled people should have sex lives, just not with me.

Along the same lines, there is a quote “In a society that profits from your self doubt, liking yourself is a rebellious act.” But sometimes, I don’t want it to be rebellious or earth shattering or a learning moment, I want that confidence to be as approachable and materialized as the next person’s. By virtue of my disability, sex with complete strangers is probably never going to be something I want. I already know that [sex] is going to take more pre-communication with the other party(s) involved than for other people, just like my going to an amusement park with someone is going to take more pre-communication than for others. And to have the ability to have such negotiations, I personally need to know the person; I need to trust them enough with my body before just jumping in bed. In so many ways, my life is not a Ryan Gosling movie, with no scripted dialogue on mechanics; instead just flurries of bedsheets and rainy make out sessions. All of this said, though, doesn’t mean I can’t have casual sex and enjoy it. Just because I have rapport with the person doesn’t mean we have to date for five years, buy a ring and ride off into the sunset on a white horse. If I feel comfortable figuring it out with them, and they with me, let’s do it and make our own terms for what the next days look like. There’s this prevalent idea that to be with me is a commitment or an ordeal by virtue of “signing up” for my bodily differences. And I probably will go for commitment someday, but that has nothing to do with my disability. Why shouldn’t we have our fun and leave it there? Or some iteration thereof. Sex is sex is sex is sex. And from what I hear from my friends with disabilities, disabled people are disproportionately more likely to be creative and open in approaching sex and relationship structures because by definition, we are used to thinking creatively about making the world work for our bodies, so why shouldn’t that transfer to my personal life? I have 15+ plus years of experience in advocating for the needs of myself and others- just think of how seamlessly I’ll learn what you want and tell you what I want.

As you’ve probably put together at this point, I am inexperienced at this point in life. While part of that is ableism, it take two to tango. My side of it is the mechanics, and not having examples of sex icons with disabilities to model my sexual existence. Smooth, slow movements are not my forte. I cannot just “go in for a kiss”. Spasticity has a way of ruining the moment. What is meant to be a gentle caress of the cheek can quickly devolve into me just like, grabbing the side of someone’s face. As a result, I am less likely to confidently make that move. And of course, not all indications of attraction are physical, but this lack of game, so to speak, is applicable to the rest because I never got to see what a successful “can I get yo numba” looked like from a disabled woman. Because as a group, we are not seen or represented as aggressors; initiators. But as a person, Sonya, gender and ability assumptions notwithstanding, is an aggressor, an initiator that goes after what (and who) she wants. It’s hard to explain this dichotomy to myself and my friends: that I’m 21 and want it, but am also already jaded from experiences of desexualization that I will resist the urge to make that move, because I’m already steeling myself off for a rejection that hasn’t even happened yet.

Because I know that at my core I am a bit of a hunter, though, and because I’ve had chances in young adulthood to see what this feels like, I am confident in myself as a sexual being- even if that being hides a little in the face of desexualization re: dateable self esteem. I’m slowly but surely navigating self pleasure in a body where motor skills and muscle control is lacking. I’ll dance in my underwear; put myself in front of a camera; lotion lotion lotion, bath salts; the right magazine. Much like the narrative around sexual pleasure, the mainstream narrative around self pleasure (especially for a woman) is so limited to penetration, that folks who don’t have that ability or interest or (let’s be real) work ethic, are alienated. And in my case, left to believe that self pleasure isn’t an option for them. Seeing all of this on a page in front of me it makes complete sense as to why it took me a disproportionately long time to know include myself in the sexual conversation. As children, we are taught that “private parts” and touching are taboo, even gross things with the potential to be dangerous. So even though I was blessed with pretty radically inclusive sex ed starting at 15, I still sometimes grapple to let go of the idea that talking about and engaging in sexual thoughts and feelings is not somehow perverse, because I was not granted applied social allowance or inclusion to explore and indulge. I had to show myself first, with virtually no flirtation or external encouragement from peers- I had to decide to be sexual, whereas others just get to be in the eyes of the world, for better or for worse.

There is another side to disability and sexuality that is a little more hopeful. There is a serendipitous trust in asking for physical help, and a serendipitous and beautiful intimacy in receiving it. I feel closer to so many of my abled friends because we’ve navigated touch via my “special” needs that others do not call on friends for. Arguably, my closest friends are more comfortable to socially touch me, because boundaries for touch were first restructured in a context of utility and need. Drying my feet after getting out of the shower while still post op; guarding me as we make our way down busy subway steps; sitting on the floor back to back so I don’t fall over; moving my hair out of my face while I pause going up steps, breath heavy; a long walk on the beach, sun setting as a friend holds my waist in her hands.

In this vein, one of the biggest turn ons for me is automatic disability awareness. When I meet a person and I don’t even have to think about the clinical, but can just slip into social and sensual interactions because they know what to do, I’m just about ready to jump their bones. The question of mechanics, the thought of ‘going in for the kiss’, is no longer intimidating, because there’s an assurance that we’ll figure it out together, and they’re not expecting traditional grace. There is no fear in breaking me, so I have permission to be my full, spastic self. The sexiest thing I ever witnessed was while walking down the streets in Boston with a new friend who I felt the potential to be more. We walked at my pace, giggling as our fingers brushed, talking about our days. We’d hung out several times, and they knew my staunch sense of independence. Suddenly they just took my bag off my back without saying anything. My body didn’t flinch (spaz) at the touch. But, conditioned by people assuming I can’t carry my own bag, I said “I got it”. And they said softly from behind me “Oh I know you can, but I want to.” I just about died right there.

As good as it felt to be taken care of in that moment, I generally resist being consistently taken care of, because I worry an expectation that I need help managing will become the norm and a friendship or romantic/sexual option will devolve into I am delivering a service out of necessity. It is almost impossible not to become infantile in that person’s eyes at that point. And once I’m seen as childish in the eyes of someone I’m attracted to, there’s no going back. Because put bluntly, none of the people I want to fuck want to fuck a child. Almost ironically, I am a natural caretaker, and believe it is possible that one day I’ll meet someone who will see that and be secure enough to let a physically disabled woman take care of them.

If you’re still reading, I commend you. This is a lot of information, a lot of food for thought. I’m not sure how to close this one out. I vacillate between appreciating myself and finding motivation to go out and meet people via that appreciation, and feeling so drained by the realities of being desexualized that I fall into the “forever alone” rabbit hole. There are moments I put time pressure on myself, saying I won’t be this mobile and energetic forever, I should be sexual while I am young and able. But then the radical in me reminds that I will be sexual as long as I define that for myself. So if you are abled and have eyes for a disabled person, resist any urge to suppress it, and be gentle with yourself. If you’re disabled and sexually active, amazing. If you’re disabled and electively not, also amazing. If you’re disabled and ready and waiting, navigating as best you know how, I see you and believe our time is coming. In the meantime, imma be here in my little black dress enjoying my dance party in the mirror.

Today, this is where she stands.

~ Sonya

It’s Okay if your Disability Bums You Out

In the beginning of my Freshman year of college, an acting professor had an abled bodied student imitate my disability for a performance project. When I along with the others in the class vehemently dissented to this, the professor publicly insisted that I just wanted to see myself as abled bodied, because I resented my disability. Since it was an autobiography through movement, she condescendingly explained, to ask that my story be portrayed by an entirely abled body would be to take advantage of the project to see myself as something that I am not. It was a matter of discomfort with my own body, she screeched in front of my peers. The professor had known me for about 6 weeks.

That’s not true, I said through my anger, my 18 year old sense of self under attack. I’m happy with my body as is, you’re missing the point. I was employing a lifetime of indoctrination of “I’m perfect as I am”, not yet ready to accept that the reason this person’s words stung so much was because there was truth to them. That day in class has haunted me for years, the venomous You don’t like your body bubbling to the surface when anyone or anything brought up that very feeling. No. I would think, steeling myself: You’ve worked too hard on this vessel to be dissatisfied with it.

It wasn’t until very recently that I was able to allow myself frustration surrounding my disability and more specifically, the barriers I face on a day to day basis. I don’t remember a specific moment I really began to accept that ache, but I know that it came along with the realization that I’ve achieved the pinnacle of independent living, and was still jumping hurdles of inaccessibility and ableism. This is, for all intents and purposes, as good as its going to get. I’ve done my work. And I still have Cerebral Palsy after it all. And when things suck, things suck. At this point, who am I putting on a facade of impenetrable bravery for? My movement professor? I’m the one living with and navigating disability, and I celebrate the triumphs, so why shouldn’t I get to cry about it, too?

The answer is that abled society on a macro level, boiled down to several adults in my upbringing on a micro level, are and were uncomfortable. People who don’t have disabilities are often uncomfortable with the subject of disability because it reminds them just how random their own health is, so the fact we disabled people may even have strife with our “misfortune” is just too much guilt to bare. This manifests in an overly positive narrative surrounding disability, especially physical disability. Abled people LOVE stories of people “overcoming” disability, and seeing us fulfill hobbies and goals that abled people do all the time without comment. The constant push of the positive has an anxious quality to it, as if to say See? Their lives aren’t that bad! Look at them, having jobs and hobbies. Must be a sweet life of inspiration- I have nothing to worry about. This ideology is so prevalent that the more grimy parts of disabled experience are not only forgotten about, but erased entirely. As a result, I as a person with disabilities will hide feelings of sadness or resentment, that actually exist side by side to disability pride. Self love and hurt are not mutually exclusive.

And the hurt is as real and consistent as every other part of disabled experience. For every video of a child with disabilities taking those triumphant, tentative first steps, there are a hundred tears that weren’t caught on camera. Enough hiding behind vague theory, though: I recently came face to face with my own hurt. It was days before my 21st birthday, and in the short time I was staying with my parents before school, I got a chest cold that completely overwhelmed my body. Coughing, in spasms, and exhausted, I could barely get out of bed. I had plans to go to meet a good friend of mine from college in a small beach town about an hour away the day before my birthday. I hadn’t seen her in a year, and we had plans to soak up the last bit of summer sun and go out to my favorite restaurant. I was so excited, having hung onto it since we made the plan weeks prior. But the night before I was supposed to catch the bus, I woke up unable to breathe, and had to cancel. That next day into and beyond my birthday, I felt like a shell of myself, barely eating and so exhausted. Meanwhile, my abled friends who I had just done a week of volunteer work with were getting back into their day to day lives which I had a front row seat to thanks to social media. They all just bounced back from a week of hard work and little sleep, whereas that level of exertion was just now catching up to me, and I spun into angst as I began to compare bodies.

When my mom got home from work the day that I was supposed to meet my friend, I was sitting on our dining room bench in the same T shirt I had worn yesterday, with a sea of used tissues around me and a blank stare affixed on my face. “How are you, honey?” she asked sincerely. “Not great.” I said hollowly. “I guess I just really wanted to see Jordanna.” “Mm hmm.” she said solemnly. “And I just…” my voice trailed off for a moment. “…Don’t understand why my friends get to jump back into everything while I’m stuck on the couch. This is not how I imagined 21.” I said, my voice cracking on the last part. My mom looked at me from across the table. “You can cry, baby.” And then I did just that. Tiny droplets that I wiped away quickly at first, and then full on blubbering. I started to talk about my movement teacher, and feelings of being trapped and inadequate in my limitations. My mom listened patiently as I took a breath and said that I loved my abled friends, but sometimes hearing about everything they’re doing just reminds me of what I’m not; what I can’t. And how I don’t tell them this because I want to know about their life, so that sadness builds in me as I remind myself again and again of the difference between myself and them, the difference I had convinced myself I am proud of. When I was done, my mom looked at me and said gently “That makes total sense. I’m so sorry you are feeling all of this.” And then we just sat at the table for a few minutes as I got myself together, and my mom started to tell me everything I am doing, reminding me not to discount my own path.

It is this presence of abled people like my mom that gets me through those moments now; the ability to simply share in harsh realities without jumping to fix anything. So far, disabled adulthood is full of those hard moments. Going back to school as an on-campus resident is reminder after reminder that I’m not like the others in my dorm. And I am learning to allow myself sadness when I’d rather be up and about like the others, while also knowing that on the whole, I love this life. Part of my ability to hold all of that is thanks to a newer, full support system of abled people who have a deep love for me and sit with me in it all.

If you are disabled and reading this; it’s okay if your disability bums you out now and again. It is after all, a dis/ability. To abled people reading this- resist the urge to share that sickly sweet facebook post about a disabled stranger. Fight the urge to solve every problem, and instead practice just sitting with it. And if my movement teacher is reading this- your comment really messed with me for a long time. I wish I had had the courage to tell you the truth then, but better late than never: sometimes, I do wish I was abled, because sometimes, this ‘disabled’ thing is really fucking hard. I’m holding it as best I can. I hope you can, too.

Today, this is where she stands.

~Sonya

 

Intent vs. Impact: Activists can be Ableist, too.

This is Where She Stands’ first guest post, written by Ariel Adelman

In the last decade, activist circles have embraced intersectionality as a principle and practice. Professor Kimberlé Crenshaw, a scholar of critical race theory at Cornell University, developed intersectional feminist theory two decades ago. Her pivotal paper redefined feminism as an intersection of various identities, particularly in the context of Black womanhood. Such identities include race, ethnicity, immigration status, religion, socioeconomic status, sex, gender, sexual orientation, health status, and dis/ability.

As a whyte woman I defer to POC, especially WOC and QPOC, in almost any space, as should be done. Some of my own intersections include being Jewish, an immigrant, raised working class, queer, and both chronically ill and disabled.

Efforts to intersectionalize activist spaces should inherently require physical and emotional accessibility. Creating a truly intersectional forum implies acknowledging and including disabled and/or chronically ill people; otherwise, the space and its creators are derelict. The bare minimum so adamantly demanded remains unmet when people cannot participate in the discussion, whether physically or emotionally.

Such hypocrisy inspires the question of why accessibility is so often ignored in so-called intersectional spaces run by “woke” leaders.

This is more of a rhetorical question than anything. Part of the answer lays in lack of visibility, some of it in lack of education, and still more in the catch-22 of inaccessibility. When disabled activists do not have a voice in sociopolitical arenas, the discussion remains inaccessible, further preventing improvement, in turn perpetuating the silencing of disabled voices, and so on.

 

A more important question may be, What does inaccessibility look like? Most abled people can identify physically inaccessible locations with a little thought and empathy. On the other hand, these same people often have a hand in creating or maintaining emotionally inaccessible activist spaces through unempathetic, condescending, and sometimes violating treatment of us — despite good intentions. This is largely found in people’s reaction to seeing disability. Probing questions and insensitive remarks usually start off the conversation. For instance, I recently attended a rally organized by my (able-bodied) boyfriend and some of his comrades. I knew some of the organizers from other activism, but was also introduced to many people that day.

To contextualize these interactions, know that I am a very part-time wheelchair user. I am usually insistent upon standing or walking for as long as possible, sitting when needed (which is often). I don’t enjoy using the wheelchair but I know when I absolutely need to use it.

 

Some of those who knew me saw me in a wheelchair for the first time asked, “What’s wrong with your legs?” or “What happened?” Some asked this with barely a hello beforehand. A few rally attendees were scarcely introduced to me when they asked why I was in a wheelchair.

Oh my god, Karen. You can’t just ask someone why they’re not walking.

Still worse were those who didn’t ask me, instead opting to ask my boyfriend — as if it were too uncomfortable for them to see me using a mobility device. If you’re going to be rude enough to ask, at least ask me directly; I promise my chair doesn’t have self-launching missiles aimed at people asking ridiculous questions (yet).

The main reaction I noticed from people I already knew was pity. Pity. Why is being in a wheelchair pitiful? It’s the opposite —it helps me move! It increases my mobility! It is absolutely none of your business!

One notable reaction was that of an acquaintance named Nobu, an indigenous rights activist whom I know from the OccupyICE protest (downtown Los Angeles, outside the federal building on Aliso Street). Many OccupyICE protesters were already aware of my disability, but had never seen me in a wheelchair. Nobu and others had been very helpful and accommodating before.

He waved hello, asked me how I’m doing, then casually asked, “Why the chair?” I replied, “I’m just that disabled hoe, you know?” He pumped his fist and said something to the effect of “Hell yeah!” – and left it at that. Abled allies, if you must ask someone, that is how it is done. Mobility devices are an awesome thing and should be treated as such.

 

In order to make activism more accessible, leaders must rethink how organizing occurs. If a movement or organization has physical meetings, ensure that everyone can participate. For instance: ensure that the physical location can be easily accessed in terms of transportation and actual entrance; remember to include an interpreter if relevant; find locations free of barriers to mobility devices and that offer pain-free paths of access; and utilize technology like video conferencing to include those who may not be able to physically get there. Just as importantly, do not stigmatize self-care. If a disabled or chronically ill person decides they cannot physically attend, it is not up to you to evaluate the validity of their decision; instead, it is up to organizers to ask how to accommodate them and remain open to new, radical ideas for accessibility.

So how does one be a good abled ally?

The same way one is an ally to any other marginalized group: No assuming you understand; educating yourself; using that education to evaluate the accessibility of all spaces, and then calling attention to areas that need improvement; elevating our voices; and of course calling out ableists when relevant.

 

Today, this where she stands.

Ariel

Ariel is a third-year student studying classical voice and international relations at the University of Rochester. She co-founded Students for Chronic Illness Visibility, a new organization dedicated to raising awareness and making campus accessible for chronically (ch)ill students. A member of Kappa Alpha Theta Fraternity, Ariel participated in efforts to educate her community about eating disorders, particularly during National Eating Disorder Awareness Week. While some of her time is occupied by going to therapy for myofascial pain syndrome and tarsal tunnel syndrome pain, Ariel also enjoy being gay, drinking excessive amounts of caffeine, and singing baroque arias.