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.

It is Possible to Adult too Fast

This past September I moved from upstate New York to Denver, CO for a job I didn’t yet have, with no place to live, and no ability to drive. That sentence feels ridiculous now, even though it seemed like the obvious thing to do at the time. The reality was less rom-com adventure, and more just straight up ridiculous. The next time your physically disabled, single, female friend who just turned 20 says she plans to move across the country alone to ~figure shit out~ show her this post. Not because she can’t, but because maybe she just shouldn’t. And okay, maybe the wandering soul in question doesn’t fit that exact description, but this advice is transferable to many young people who may have the urge to do something that is actually more logistically and emotionally difficult than it’s worth. Our rom-com culture glorifies overblown adventures in the name of self discovery, even if it’s at the expense of self care.

I had originally come to Denver in Summer of 2016 to work with my dream company- Phamaly Theatre Co. Phamaly Theatre is the only professional theatre company completely comprised of actors with disabilities. That first summer I completed an intensive internship, which was one of the best learning experiences of my entire life. Filled with disabled and disability aware people, the city of Denver had won my heart. When I landed a role in Phamaly’s production of Annie the year following, I jumped on the opportunity. But when my financial aid was cut in the middle of the run that July, I faced a choice: go back to school immediately or try my hand at a full time job. I chose the latter, moving 1,800 miles away semi-permanently to be what I thought was an administrative assistant, but was really a case manager in a program for people with disabilities experiencing homelessness. You know, some light cultural fare for my time “off”. I was suddenly in an entirely new reality: living on an air mattress, I was grateful for the experience, but realized I was unprepared to be this far away from my support system in a completely new job.

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The distance between Albany, NY and Denver, CO on a map of the United States, courtesy of Google Maps.

Our society loves the “teachable moment” the “I pushed myself and never looked back” stories. Mine was indeed a teachable moment. And from (almost) the other side of it, I can also say it was Too Much Too Fast, and if I had the chance to do it over again, I would take less on or maybe not even come to Colorado in the first place. I get that this is not always a feel good thought: girls takes leap; didn’t like what it felt like to fly. But there is real value in admitting you didn’t like something, seeing it through, and being able to be honest with people about what you did (and didn’t) take away.

Now that I have you on the edge of your seat with that rousing message of uplift, what didn’t I like- what wasn’t I ready for? My new position contrasted the artistic vibrance of my past experience, and I felt on my own in the newness of everything. I have a well rounded group of friends in Denver, but got here and realized they all have lives that weren’t changing like mine. I started to miss the bulk of my support system that is pretty evenly split between upstate NY and Boston. Of course now that I’ve been here for a year I’m getting ready to leave the friends I’ve finally made. But that’s the way the cookie crumbles, and I’m able to view it as having pockets of support all over the country. That said, it took time for me to build community alone in a new city, and the first several months dragged as I was constantly reminded of how few people I knew here. Thaaaank you social media ;).

There’s another side of the loneliness, which is the reality of having to single-handedly address logistical curve-balls without the support of, say, a significant other or close friend who shares the experience in real time. I wouldn’t say I’m resentful of the single life. That is until I got home at 11 PM from my second job and saw at the end of that 17 hour day that my bathroom and surrounding carpet was flooding with toilet water. It took the “emergency maintenance” personnel over an hour to arrive, only to insist this was not an emergency (???) and to quite literally yell at me while doing a substandard job at addressing the growing flood. In this scenario and so many others it would’ve been nice to have someone to share the brunt with right then; to act as a buffer with this mean man; to remind me to make a copy of the complaint I submitted the next day, and/or just to give me a hug and remind me I’m okay. The whole “me against the world” thing gets really exhausting really fast. And I don’t want to be against the world, but the amount of curve-balls thrown made it feel that way even when I was finally making friends.

And then there is my job. Oy, where to even begin. The very premise of working with a group of adults, all of whom are 10+ years older with ~degrees~ and ~families~ had me in over my head. I have learned that one can hold themselves professionally- be respectful and timely, and still unknowingly fail in adhering to an organization’s specific, long list of unspoken cultural guidelines. And everyone was perfectly nice, as was I. It’s not necessarily about “nice”. Perhaps in a place where there aren’t many opportunities for excitement, like a monotone office filled with smaller offices that all look similar, with similar work being done day in and day out, there isn’t much engage folks. So people create their own ways to engage, making an arbitrary set of ‘rules’ to work under.

The social cultures I’ve slipped in and out of prior to this are very different- the boundaries are clearer, and if there is confusion about a boundary, it is acceptable to voice said confusion candidly in a more casual setting. In the job there was an expectation to talk about your personal life and hear about others, but what was okay for one person to say was not okay for another based on hierarchy and seniority. This caused stress around how much I was sharing or not sharing, and I felt uncomfortable that my superiors would confide in me as much as they did, worrying I wasn’t responding appropriately. Meanwhile those who were confiding were protected by their status in the office. Because of how new I was, and how young I am, and being the first physically disabled employee, I immediately felt pressure to prove myself as capable within the job. Maybe some of it was self imposed, but there were definitely some raised eyebrows and quick dismissals that weren’t of my imagination.

All of this considered, I think I did okay, handling situations with as much grace as I could. But again, just because I managed doesn’t mean I should have stayed in that position of unsureness. This confusion carried over into the work as well, the messiness of which only furthered the blurred social lines. There were contracting and under-staffing issues early on, which is why I ended up taking on case management so quickly. Before I knew it, I was working a lot of overtime and doing crisis management on an admin salary, and not until after the storm blew over did I ever even consider resigning and going home. It never occurred to me that I didn’t have to be in the position I was; that the program would survive without me and a part time job at Michael’s craft store in the comfort of my parents company was really just a few emails and a plane ticket away.

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PC: Brian Bernard. Photo: A very focused Sonya presenting to colleagues. To left: co-worker, work wife, and saving grace Alexandria Kollar. 

I failed to consider this as a viable option because however stressful, I felt empowered on some level by the job I did have. It may have been a struggle from start to finish, but at least I did it, right? Along with the romanticizing of taking big leaps, american society has a phobia of “giving up”. Walking away from anything is internalized as defeat on a cultural scale, and trickles down to individual decisions. In an unhappy marriage? If you haven’t sat in that discomfort for a certain amount of time in an effort to “work it out”, divorce is frowned upon. Same applies here. What kind of callous person would walk away from the opportunity to help vulnerable people to instead work a retail job? Certainly not me, no sir. I had moved across the country! This was my time to fly my east coast nest. The idea of leaving felt ridiculous- ruining the lifetime movie that was only halfway through, so I didn’t even give myself the option until I only had a few months left and leaving was no longer justified.

It is worth noting that in the times I felt the overwhelming exhaustion, I had Phamaly, the arts, and the glimpse of a future career to keep me grounded. The second job I mentioned was doing accessibility research on their production of Into the Woods. And when I first arrived for the case management job in September, I jumped into work on a Sketch show. Were these opportunities “worth” everything else I endured? I don’t know how to quantify that, but I am so so grateful for Phamaly and the fact that I was present and involved for so much, even if the rest of my experience this year wasn’t all curtain calls and applause.

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PC: Morgan Eller for Vox: Under Construction, Produced by Phamaly Theatre Company and Community College of Aurora, Nov. 2017. Picture: Flower Troubles written and performed by Sonya Rio-Glick

At this point, with just days until I leave Denver, I am left with gratitude for all I have learned, hard to swallow pills and all. I will miss the sense of independence I enjoyed, and my new close friends. Despite everything I’ve described. I don’t at all feel regret, because like it or leave it, this is where I am. Because of this experience I am all the more grateful for the opportunity to return to school closer to home. It’s so close I can taste it. With that in mind, if you are reading this and realizing you  feel stuck where you are, don’t hesitate to make that change! Sure there is risk involved, but if you take a risk and don’t really like the outcome, I hope my testimony is enough for you to find a way to make another change. I’m beginning to realize that life is simply a series of turns that we don’t have control over. But we can control whether we’re making the turns, or others are for us. If there’s one thing I’ve learned, it’s that I’m no longer going to accept a given circumstance simply because it’s been put in front of me. I hope you can commit to the same.

Today, this is where she stands

Sonya