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.

Denver_to_Albany
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.

FullSizeRender
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.

IMG_0702
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

Your Curiosity Is Not My Responsibility

I’m a part time wheelchair user. And I’ve found that the days I use the chair are 10 times more emotionally draining than those I do not, because everyone feels the need to comment on my wheelchair, my choice to use it, the fact that I am sitting, the list goes on. And when I say that everyone has something to say, I do mean everyone. Once, 6 different people made comments on my 25 minute public transit commute, only to arrive at work and have three more coworkers chime in. And when I don’t use the chair for a stretch of time, there’s a lot of “where’s the chair” inquiries. The answer? I’m just not using it. For me, it really is that simple. But for others, it’s not. Regardless of an individuals answer, the point is they shouldn’t have to have an answer. On principle, it’s none of your damn business.

My mobility is not casual conversation. The fact that in an abled-bodied person’s world it is gives way to glaringly uncomfortable privilege differentials. After all, I’m the one in the hot seat- pun intended- it’s my mobility and my choices in question. In my eyes the topic of mobility specifics is a little more personal than how much money I make, and a little less than the details of my sex life. Even if it’s a seemingly harmless question, like “is… this…new?” (an actual question I was recently asked by a coworker who had yet to see me roll), the call to engage is tiring. And in this case, it wasn’t harmless. “This” is a wheelchair. Not herpes. You can say it at work. Erasure is still erasure, however casual. Imagine if that was the response to a new haircut. It would immediately be insulting.

When I share my distress about this with other abled’s, even the most empathetic fall prey to defending the commenter, perhaps because they can relate on some level to the squeamishness. “They’re just trying to connect!” they’ll insist. Or “They’re just curious!” and, you know, that may very well be true. But the former implies that their desire to “connect” outweighs my personal space, that I should be ready to “connect” at a moment’s notice, regardless of what may be happening in my world, simply because another person wants to engage.

Furthermore, such comments and questions are not actually a want to connect. I know because Americans are some of the most connection-fearing people ever, myself included. Folks will stand on a rumbling bus ride before sitting next to a stranger. “Staring”, or really just looking at another person at all, is considered intensely rude. This is true even if what is drawing the attention is positive, like a happy baby. So no, my wheelchair does not just suddenly inspire people to make best friends and share in one another’s souls. And in this example, the coworker in question has been particularly cold to me. This was the longest exchange we’d shared in 10 months of working together, not for my lack of effort. And still she presumed an entitlement to this particular discussion simply because it struck her in the moment.

In response to the curiosity, I’m curious about a lot of things: Why is my bus driver so grumpy? Is that hot person in shouting distance single? But in these matters and so many others, I know to be curious in silence. Partly because it’s not polite, and partly because my voicing such thoughts is not actually conducive to anything for myself or others who may be involved. Yes, mobility inquiries sting personally, but also there’s no real means to an end. So what if the wheelchair is new? So what if it’s not? The lady asking didn’t really care one way or another, because one way or another, it doesn’t inform a view of me or our relationship.

It is most likely that this woman and so many others feel a level of discomfort, or at the very least, surprise, in having to interact with “this” and figure “this” into their day. And the only way they know to manage this is to put some of their discomfort or surprise onto the shoulders of someone else: I just happen to be the closest receptacle.

So, with all of that in mind I made a flowchart*. Yes, a flowchart. What else does one do when feeling stressed?? This is meant for whomever. It made me feel better to see in front of me a visual representation of my frustration paired with a solution. Because there is a solution, and I can guarantee you that it is not minimizing the exasperation of your wheelchair using friend with justification of curiosity, connection, or whatever else. I hope this helps change even just a few interactions. Because we all have responsibility here, but your curiosity is yours to manage, not mine.

Wheelchair_etiquette_flowchart

Today, this is where she stands.
(Or sits. When she wants. See above 😉 )

~ Sonya

*If you or your friend would like to share the flowchart on social media, in a class, or with any other group of people, please credit Where She Stands. If you would like to use it in an academic paper, a presentation, or any other formal capacity, please reach out to me first.

Not All Steps are Created Equal

This post is a commentary on the following video. Make yourself smile and give it a watch.

https://abcnews.go.com/Health/year-cerebral-palsy-celebrates-taking-independent-steps/story?id=56370753

I had a moment like this. I know this awe and see this little one in her journey! I was 5, me and the fam were dancing to It’s Raining Men, and my little 5 year old mind was like “If I can dance unassisted, I can walk unassisted.” I turned to my mom and said “I think I can walk without my walker” and promptly set off across the house “I’m doing it!” I said “I’m doing it!” There was no video documentation because it was in the middle of a dance party in 2003- let’s be real.

A few things-

Walking is glorified to an extreme. Often when videos similar to this are shared around, I don’t give them a second thought because the underlying appeal to them is that the person has “overcome” their disability and “never gave up” on walking. This feeds beliefs that wheelchair usage is bad, and that physical ability is just a matter of willpower. In reality, there are real, hard to swallow limitations to the physical abilities of people with physical disabilities. Make no mistake: The walking itself is a small piece of why this is special. The truly miraculous part is witnessing a little girl understand that there are suddenly so many more options for her. Her life is no longer as prescribed by what she can and can’t do: she broke that expectation once and she can do it again, one step at a time.

This four year old already exhibits more bodily awareness than most people. It’s easy to be here for the victory, to share this video and share in Maya’s excitement. But few are here for the journey- the specific efforts that go into this moment. The most telling part of said journey is when she exclaims “I even took a big step!”. To most watching, each step seems about the same. But Maya knows what qualifies a “big step” she is already defining for herself how her body works in a world that won’t be able to know her body as well as they know others.

There is community in adverse experiences. Part of why this video is going viral is because it’s unexpected: an appreciation for an action that abled people take for granted by and large. But as I said in the beginning, I had this moment too, as did so many others. Disabled people are everywhere. There is no shortage of hard won first steps, but often, we at some point feel we are the only ones experiencing x, y, or z, because often community is lacking in the moment amongst abled majority. But we out here, cheering each other on, watching from the other side of 15 more years with disability.

So to Maya: keep taking those steps, big and small. There is so much more for you to call your own. Can you relate to this story? Did you have your own moment? Let me know here. Let’s share in that community!

Today, this is where she stands.

– Sonya

My Take on Medical Experience 6 Years Post-op**

Six years ago today I had a six and a half hour operation at Shriners Hospitals for Children in which six different surgical procedures were performed on yours truly. I was 14. Each year, I tell myself I’m going to say something to mark the occasion, but this is the first time girl can get her words together.

Firstly: let’s stop asking if I’m glad if I had the operation. That question feels out of place and makes me squeamish, mainly because it didn’t feel like I really had a choice even though, yes, on paper it was elective. And more importantly I did go through with it, regardless of the results or implications of that decision today. This is where I am; these are the legs I have. This question is irrelevant and offensive, because asking me to ponder a reality that can’t be mine is not conducive to my emotional well-being. I have nothing to compare the “now” to. I can’t look into a crystal ball and see what my life would be like if I’d opted out, nor is there any way to quantify which path is “better” if I could. Furthermore, if we could quantify such things, I can’t turn back the clock. I made my choice, and if I indulged people in this curiosity, I’d be pointlessly dwelling on an experience far far away.

It is worth noting here that the only folks to pose this question to me are abled-bodied, who have overwhelmingly not had to make such a choice. A fellow crip has never wondered, or just known enough not to ask. This detail is telling of an important quality of the disability community as a whole. I try not to speak for others, but I can say confidently that as a group, we by virtue of what is handed to us in the day to day do not make a habit of wondering what would’ve happened if we’d went left instead of right. This is because folks with a wide array of ability status variations are handed a million smaller scale defining decisions that affect us in big way later on. For example, do I use my wheelchair or walk today? Which of the close busses do I catch to work today? How much time do I leave myself to get ready in the morning? These are all day to day variables that seem small to others, but determine my professional tardiness, safety, and well-being. Because of the nature of my symptoms, I have to answer these questions differently each day. So I’ve gotten used to not questioning my self care choices, but instead laying in the bed I made regardless of the outcome. Because while every once and a while I may miss the mark, stewing in this error doesn’t help me, nor does an Abled telling me I “should have planned better” This is the case for so many others with disabilities, so such etiquette is carried over to larger-scale choices, like surgery.

So, now that we’ve established I had the surgery, period, what the hell got high-school-freshman me to that point? After randomly being referred to the hospital by a well-intentioned stranger, I got my gait analyzed, and a surgeon offered me 6 all-or-nothing procedures that could “drastically improve” my mobility and long term experience with Cerebral Palsy. But at the end of the day, it wasn’t life-saving, and myself and my parents had to “opt-in”. I was falling a lot, and doctors had been telling me I’d lose the majority of my mobility by age 25 for as long as I could hold a conversation with a doctor. As a young girl who had never known wheelchair usage, I couldn’t conceptualize that, and the time was ticking on making “improvements” to my body because I was almost done growing. I didn’t have a lot of time to make the decision, and the amount of “what if’s” that lay in passing up the operation were too much to leave as a question mark.

To this day, I know I wasn’t adequately prepared for what I was signing up for. But I also know there was not necessarily a way for medical staff to adequately “prepare” a child for such an experience. What followed the actual operation on May 23 was a painful, medicated blur, to the point where I actually don’t think it’s worth trying to recount my 10 day hospital stay. What I can say about my experience with the hospital experience overall (pre-op, recovery stay, follow-ups/PT) is that ableism in the medical field is alive as of 2012/2013, and largely goes unchecked because of the good reputation the hospital may have, and because by and large medical professionals are given a pass because it is assumed that based on their clinical knowledge, they understand how to apply such knowledge to patients who are medically involved by way of physical disability and/or chronic illness.

Before I begin to explain some of the ways the medical world really f*cked [me] up, I’ll share explicitly that I am simultaneously so incredibly grateful for the medical care provided to me, and recognize the privilege I inherently hold in having access to such services. The biggest, most important lesson I’ve learned in all of this, is that I can hold both truths at the same time: I can live with and process trauma, grief, and exhausting experiences while at the exact same time feeling and expressing incredible gratitude, relief, and excitement. I have no time for nor business with those who shame me for parts of a complex experience that is mine and mine alone to reconcile.

So that said, here are some of the important details of my interactions with the medical community to date, specifically in context to the multitude of operations performed at Shriners Hospitals for Children that I feel is important for others to know about. Take this as you will:

– When the surgical procedures were first presented to me, the surgeon emphasized the cosmetic effects of the operations moreso than any long term medical/mobility benefits (“it will straighten you out! You will stand taller!”)

– When I checked the surgeon on this, he was surprised I, the patient, wanted more detail.

– In my ten day hospital stay, I met 16 different nurses, all of which were named either Judy, Carol, or Marie.

– Somewhere around day 6, one of the aforementioned nurses tried to incentivize me to practice transferring from the bed by telling me I “had to pee” and turning on the faucet in the room indefinitely. I fell asleep, and later awoke to the sound of my mother entering the room and slipping on puddles of water in the now flooding hospital room.

– Also somewhere around day six, a resident was entrusted to hold my leg that had 5/6 operations performed on it during a transfer, and dropped it, causing full hip flexion in immediate recovery.

– There was an overall ignorance of the effects of pain medication/narcotics. Staff did not seem cognizant that the drugs were affecting my ability to communicate, and causing me to become over-stimulated.

– My parents were not fully informed of the extent of the at-home care required until I was already in immediate recovery/imminently requiring said at-home care.

– At the follow up where my first casts were being removed, the cast-remover handled my 5-surgery legs like a sausage link, whipping that sh*t around, causing my mother to scream at him that he “needs to be gentler or I will make sure someone else removes her casts”

– At the same follow up, an X ray tech moved a board to my legs with such force that my shins sustained bruising; when I became upset, she insisted on hugging me as I lay on the table.

– At my 6 week follow up, a PT expressed blunt dissatisfaction at my “lack of progress” saying that “most are up and walking at this point; you should be working a little harder.”

So, yep! That happened. As much as my parents impressed upon me that things “would get better” in the following weeks, because I was young, I couldn’t fully depend on/conceptualize long term thinking, and became depressed in my confinement to a bed and my house as summer carried on outside and I saw fun in the sun all over social media. Eventually, though, I made it to the weeklong vacation on Cape Cod we had planned for the end of July, and I got to have my fun and participate a bit more thanks to the friends I had there being so keen on actively accommodating me in my extremely fragile state.

The months that followed were rough, to say the least. I returned to school as a sophomore, using a big, attention-drawing walker and exhausting myself to get through the school day. I also was experiencing extreme exclusion and some harassment at the hands of my peers, and felt alone in this experience. The charity based actions of a few classmates from the summer had dissipated as the novelty of post-op Sonya wore off, and the status quo of scapegoating set in. I was also still on some pain meds, and struggling through an intense physical therapy regimen.

Eventually, things quieted and I found a new normalcy. When exactly, I can’t say. The following May I had a small follow-up surgery on my hip, and re-acclimated much quicker, despite increased fear this time around as a result of the trauma/physical pain I experienced in the year prior. But I went away to a pre-college program months later, and finished high school strongly. I would go on to college and independent living in Boston, before relocating entirely across the country, where I am now before returning to school. I don’t know if I could do these things if I hadn’t had the surgery. But I know I couldn’t have done these things without the body I have now, and for that body I am endlessly thankful, and have learned to love.

Following the years long recovery, I was granted medical autonomy from parents and doctors, and took several years off of anything medical- PT, working out, doctors, the like. Instead focusing on Sonya the young person. I went out with friends, stayed up too late, learned how to act, and saw what I could of the world, sharing my medical experiences with my new support system sparingly.

In the last two years or so, though, I’ve found relative peace with my experience in being allowed to create my own independent relationship to my body. I work out regularly, see a PT of my own choosing when I can (I have an appointment today!), got a wheelchair, and have been approved/am fundraising for a revolutionary brace called the Exosym*. I live everyday knowing I worked hard for this body, and that this body is mine to do with as I please. Endless shouts of thanks to my parents who saw their adolescent, hormonal daughter through all of this, and taught me how to claim my body as my own, even when it didn’t feel like it.

To those who hung with me through this gargantuan, hard piece of writing: thank you. What I want you to know is: I’m ok. “Hospital kids” are ok, living and learning through it all. My medical history is messy and scary to think about, maybe, but also just an experience like any other. To those in a hospital, maybe confused right now. You are doing your best, keep your head screwed on straight, and keep feeling all of the things. Feeling it all is one of the only ways we know we’re still here.

Today, this is where she stands.

~Sonya

* Find out more on the Exosym here

**This post was originally published on Spastically Yours on May 23, 2018- see it here

I Didn’t Choose To Be Complicated*

Lately, my many differences (or others fascination with them, rather) have been getting in the way of my life and interests moreso than usual. I’ve never really been one to turn to thoughts of “I wish I was able-bodied” or indulge myself in thoughts of internalized ableism*, but for the first time (basically) ever, the questions of how my life may have been different or easier if I was abled have been taking up a lot of space in my head.

Disability is not the only thing that makes me “different”. I also have two moms, a gender-nonconforming identical twin, was raised Jewish, and identify as queer myself, just to top it all off. This said, in a time and place where “intersectionality” has become quite the buzz word, the complexities of overlapping identity is not simply a “weird concept” as one professor so eloquently stated, but a reality I live with every day. A reality that is sometimes the cause of alienation, and other times put on a pedestal and oggled at. Regardless of how anyone reacts to the many things that make me, me at any given time, I, Sonya, am at the center of those reactions doing my best to navigate the rest of the world’s questions, assumptions, and impositions. And in this constant, exhausting navigation, I want to say: I didn’t choose to be complicated! I didn’t choose to be stared at, or probed, or barred opportunity, again and again and again. This is not to say that if I could change my identity today, I would opt to be of majority status. I am not self-hating. But I was not any more prepared or understanding of what it means to live as a Jewish, queer, disabled female in a world run by Christian, straight, abled men when I popped out the womb nearly 20 years ago than anyone else of privilege is watching from the outside.

More specifically, I am at odds with my identity as an actor and an artist. I am a part of a very rigorous undergraduate theatre program, and I am finding myself on the outside of art-making and continually barred from creative opportunities despite doing good work, exhibiting professionalism, and being an integrated part of the community. It is difficult to discern specifically when my identity plays a role in equality of opportunity (see: discrimination), and I try not to pull out various “cards” because I do not believe in disability as an excuse. However, it has become clearer that identity does impact my educational opportunity, whether or not I can put my finger on exactly how or when.

Recently, when discussing with a professor my trajectory through theatre, she said that for me to be strictly an actor would be too narrow, because I am “too interesting” to solely take on the experiences of others when I have so many of my own. But here’s the thing: I didn’t elect to be “interesting”; a person does not burst from taking on multiple experiences- that’s what life is. There’s no quota: I can take on a character’s wholeness while still holding onto my own. The ability to hang onto that duality is what I would argue qualifies good acting, as opposed to being an inhibitor. This professor went on to suggest I poor my energies into writing and pulling from my experiences. While I (obviously) don’t have anything against writing, being “interesting” does not obligate me to share my experiences any more than your Jane Doe, straight, abled girl, nor does my identity make my writing more worthy of being read than aforementioned Jane Doe. Choosing to learn how to act is my prerogative, and to imply that my identity, in all of it’s complicated glory, should influence that because I just have Soooo0oOOoo much to say, turns my stomach.

Furthermore, a peer recently brought up my body’s fragility while doing scene work, and though only brief, it took me out of the work and reminded me that even when I am doing “good work” I am still the disabled actor. This identifier follows me even when I feel I am completely “in my art”, which seems to discredit what I am doing. On top of that, an influx of students doing various projects on disability have asked to speak with me about my experiences. And for the first time, I am trying to learn to say no. In my past, no one seemed to care about learning about disability. Here at Emerson, able-bodied kids don’t just want to learn about disability, but they want to further the discussion. That’s amazing to me! So the idea of turning down an opportunity to help that effort seems counterintuitive. But the other side of this is that Emerson is majority able. So much so that when I say I am the only one, I am literally one of maybe 10 students with visible, physical disabilities out of a whopping 4000 Emerson students. That means that if any of the aforementioned 3,990 students want to speak to someone in their community about “the disabled experience”, or if there’s an incoming student with a disability vaguely similar to mine, guess who they come to? As cringeworthy as this may sound to some, I don’t blame anyone because the thought is sound- I’d rather they come to me than make up their own “alternative facts” about disability. However, it is incredibly alienating, and thus my dilemma. If I don’t contribute, I guilt myself. But if I do contribute, I am reminded of my incredible loneliness as a physically disabled student here, and take on the impossible task of represent a sprawling community of peeps with disabilities.

About a year ago, when dealing with an instance of straight up ableism in a class (which has since been beautifully resolved, thanks Emerson), the discussion of the incident was draaaaaawn out and a frustrated abled-bodied student said “I just want to act”. Famed comedian Mindy Kaling once said on navigating privilege/oppression within the arts something along the lines of “In the time I spend speaking about being an artist who isn’t a white man, white male artists make art”. It is in this spirit of focus, not self embitterment, that I say I didn’t choose to be complicated.

Today, this is where she stands.

~Sonya

*This post was originally published on Spastically Yours some time ago- see it here

Wish I Could Explain, Wish I Didn’t Have To*

I write often here about living with Cerebral Palsy because it is what I have a grip on and feel confident in putting into words. But, my experience with disability goes much further than CP, and I think I need to start talking about my other disabilities in order to gain the familiarity I have come to take for granted with CP. So, yup: here we go. I have Post Traumatic Stress Disorder, and it’s really really hard to keep up with and understand. When most people think of Post Traumatic Stress Disorder, they think of combat veterans and sexual assault survivors. Or, at least, that’s what I thought of when I was first diagnosed a year and a half ago. In actuality, though, PTSD can result from a wide variety of traumatic experiences, because (according to Merriam Webster) trauma is broadly defined as “a disordered psychic or behavioral state resulting from severe mental or emotional stress”. Think about what causes you stress. Trauma is the result of the extreme of that, often manifesting in one experience or event. Along the same lines, a “trigger” is anything that brings that stress to the forefront, which can literally be anything. Usually, it is something very specific to the person’s individual traumatic experience, making it impossible for others to know what one’s triggers are, unless very explicitly stated.

My Post Traumatic Stress Disorder is very much socially and emotionally based, as opposed to physically like that of a veteran or assault survivor. So what I am triggered by and sensitive to are vastly different than either of those demographics. I am triggered by and sensitive to a number of things that are seemingly random without the background  that my trauma is based in social situations. Triggers are easier to explain than general sensitivities, but still difficult to explain. I am triggered by brusque confrontations, and I am triggered by being actively left out by a group of people, or being a part of a group that for whatever reason, excludes people. By extension, I am triggered by many group dynamics themselves, and struggle to feel confident in groups of peers my own age. I get very anxious when having to socialize with a group bigger than two other people, and feel much more comfortable in one on one conversations than big group discussions where you have to independently jump in to further the conversation. Also, I am often triggered if a social routine is broken. If I always sit next to the same person in a class, and then one day the person elects to sit somewhere else, I will spend hours and hours analyzing that decision even if the reasoning behind it had nothing to do with me. By extension, the same can be said for larger choices others may make, like someone having to cancel plans or choosing to stop being my friend altogether. Seeing all of this on paper in a non-triggered state is excruciating, because right now, as I am in a rational mind, these things seem trivial and not worth my time, so it’s hard to admit I am so deeply affected. But PTSD is defined by losing grasp on reality, and being unable to distinguish what is happening in the here and now right in front of you. So when triggered, rationale is non-existent, and everything feels more dangerous and much closer to reality, mimicking the original physically, mentally, or emotionally dangerous circumstance.

Sensitivities are different than triggers, because for me, sensitivities are tasks that are just harder to accomplish because of being traumatized. Some of the esoteric things I am sensitive to are: asking people to take pictures with me, initiating hanging out, telling others to accommodate a social space to meet my physical needs, expressing that something made me feel angry as opposed to any other emotion, balancing seeing people from different circles at the same time, and probably what is most difficult is assuming any entitlement to space and moving with people (I.e sitting next to someone because I want to instead of asking if I can sit there and waiting for permission). It probably sounds strange, I know. What’s even stranger is the idea of verbally explaining any of this to anyone. How do I contextualize any of these things without oversharing and seeming needy? I can’t completely legitimize this for myself yet, so how can I expect others to? This silence often leaves me feeling lonely and socially awkward, because I’m made so exhausted and nervous by the aforementioned possibilities, that I’d rather avoid people altogether than run the risk of having to confront something on the list above.

I wish I could vocalize my extreme discomfort in the moment and know the person hearing it would understand without judgement. But I also wish the people around me magically knew this part of me without my having to explain and possibly re-trigger myself in the process. Part of the reason I’ve never written about my PTSD before is because I don’t want readers (many of whom I know in real life) to jump to the conclusion that I am socially inept or dependent, or a weak person on the whole. Also, I’m not a hermit by any means. I have a healthy social life and good friends who I feel safe with. But, there is this huge blockage that stops me from enjoying this and engaging fully. I’m hard on myself, and get really really nervous often. But, you know, baby steps. In the foreseeable future, there are going to be times I feel the need to scream I want/need ____, and instead stay silent. There are going to be times I am triggered and hyperventilating, struggling to ground myself, much less let others know what I’m dealing with. But I’m going to therapy and doing the work, and I’m writing this post, and I’m able to claim PTSD as a thing that I have, even though I fall outside of what many think are the only qualifiers and don’t necessarily believe me. I’ve started to understand how it manifests for me, and I’m trying to trust that in time others will begin to understand as well.

Today, this is where she stands.

~Sonya

*This post was originally published on Spastically Yours some time ago- see it here

More than Mockery: Disabled Under Trump*

Americans both with and without disabilities were outraged when then Presidential candidate Donald Trump mocked New York Times Reporter Serge Kovaleski, who lives with a chronic joint condition called Arthrogryposis.1 Months later, the incident is still on the minds of many, including actress Meryl Streep, who used her Lifetime Achievement Award speech at this years Golden Globes as an opportunity to call out Trump on many accounts, specifically recalling the mockery of Kovaleski2. People with disabilities far and wide have wasted no time in responding to both the mockery itself and Streep’s speech. I’ve heard everything from intense outrage over the mockery, to gratitude that the debasing of someone with physical disability has been brought to national attention, to dissatisfaction concerning specific ways Streep acknowledged the issue, to people arguing that Trump never mocked Kovaleski in the first place.

As a result of the continued outcry and controversy, I’ve noticed that the only understanding of disability in relation to Donald Trump’s presidency is this single insensitive happening. This contrasts his relationship to other disadvantaged groups, where a recognition is present in how his actual policies affect them in addition to his general insensitivity. For example, criticism regarding his interaction with women doesn’t stop at the disgusting comments recently leaked3, but extend to his actual policy concerning reproductive health and access to safe abortion. Similarly, understanding of his islamophobia is not limited to commentary, but extends to protests against his Muslim ban4. This is not to say that I condone or mean to minimize his mocking of Kovaleski in any way, but only that to see mockery as the main issue at hand is to see the disabled population as nothing more than a victimized group who are bullied, as opposed to a disadvantaged minority that is legitimately oppressed through action. Because yes, words and imitation absolutely sting, and more should be expected from a perspective leader of our country. But we are a thick skinned group, and while the abled majority was up in arms about a few minutes at a speech in South Carolina, my community was collectively worrying about the slew of problematic policy that directly affects us all in some way. This policy goes largely unnoticed because the oppression of those with disabilities is often minimized or forgotten about, and it easier to call Trump a bully than to face the depressing facts of what he is about to do to the largest minority5 in the United States.

The most obvious and concrete danger that Trump presents to those with disabilities is the repealing of the Affordable Care Act7, and the block granting medicaid9. For the many who were born disabled and/or acquired disabilities at a young age, the words “pre-existing condition” are just a euphemism for their lived experience and status as person with a disability. This means that even those with some variation of health insurance prior to the enactment of the ACA have come to rely on the policy because of its revolutionary non-discrimination policy. Because disability can many times place restrictions on the jobs one is able to work, people with disabilities are less likely to poses employment-based healthcare benefits, and therefore are more likely to depend on the ACA for healthcare coverage. Additionally, many insurance companies do not have comprehensive mental health coverage, causing even people who have other paths to coverage to rely on the ACA or Medicaid to cover treatment and tools pertaining to a wide variety of mental illnesses and emotional disabilities. Furthermore, people with severe or multiple conditions are more likely to need the supplemented assistance of medicaid because of a demonstrated need a multitude of treatments, hospital/rehab stays, and/or tools to live their best life. This assistance would be non-existent following block granting.

I would not be a true practicer of the social justice model8 if I only saw ableist oppression through the lens of healthcare. Like most Republicans before him, Trump plans to cut social welfare services9, including SSI and SSDI funding, despite claiming differently. For some, this is the difference between poverty and thriving, or getting necessary day to day care in the best possible setting. Beyond the endangerment of the very lives and residences of people with disabilities, this jeopardizes caretakers and family members alike, as the (currently meager) sum often contributes to salaries for caretakers, and is used to support the families of recipients, just as one’s employment salary is often used to support one’s family members. In a more complex way, though, the mass cut of this funding reshapes, or attempts to eliminate, the role of disabled people in society. This funding allows the population of people with disabilities who are unable to work (or to work very little), a sense of autonomy in their choices and money management; to go out and see a play or eat amongst others or enroll in daily activities and programs. If it is non-existent, this population is limited to one space, a space that is often lonely. Suddenly, the average abled-Joe will see less people with disabilities in everyday public space, which perpetuates a dangerous, othering divide between the majority and minority, furthering the idea that those with disabilities do not lead “normal” lives that include a variety of ways to spend one’s time. Of course, there is also a large amount of people who are disabled and don’t receive SSI/SSDI because their disability does not hinder their ability to hold a reasonably paying position. But to assume everyone holds such privilege is to ignore the 2,321,583 applications for disability assistance that were submitted in 201610.

Of course, this is just scratching the surface of Trump’s inevitable effects on the lives of Americans with disabilities, and I encourage you to do your own research on policy affecting folks with disabilities. Also, it is important to remember that issues of ability are intersectional, with disabled immigrants and refugees impacted in a way completely separate than those born in the US, which I acknowledge my post presumes the experience. To my anti-Trump abled readers: while you are protesting, think about what you have not yet seen being protested; who’s not marching next to you. (Ableism in activism is a whole separate post.) When you call your elected officials to voice your dissent, remember your disabled neighbors. To my abled readers who support Trump: I am not here to convince you to change your mind. If you are reading this blog though, chances are you care about someone with a disability. And that person has to deal with more than mockery, they are affected by some extension of what you just read, no doubt. And lastly to my readers with disabilities: Hopefully you felt heard with this post. I’d love to hear from you specifically, as we all venture into this uncertain time. I am with you, I am struggling and scared too. But we are strong, and there is hope to be found in others and in allies. Please, don’t let anyone make you feel you have less of a place in conversations of oppression than you and I both know you do.

Today, this is where she stands

~Sonya

Sources:

1. http://www.usatoday.com/story/news/politics/2015/11/26/trump-blasted-mocking-disabled-reporter/76409418/

2. http://www.cnn.com/2017/01/08/entertainment/meryl-streep-golden-globes-speech/

3. http://time.com/4523755/donald-trump-leaked-tape-impact/

4. http://www.telegraph.co.uk/news/2017/01/29/everything-need-know-donald-trumps-muslim-ban/

5. http://www.forbes.com/sites/kathycaprino/2016/04/14/the-worlds-largest-minority-might-surprise-you-and-how-we-can-better-serve-them/#528907755f1c

6. https://www.theatlantic.com/politics/archive/2017/01/the-trump-administrations-first-blow-to-obamacare/514103/

7. https://www.theatlantic.com/politics/archive/2017/01/the-trump-administrations-first-blow-to-obamacare/514103/

8. http://files.eric.ed.gov/fulltext/EJ888640.pdf

9. http://www.vox.com/first-person/2016/11/9/13576712/trump-disability-policy-affordable-care-act

10. https://www.ssa.gov/oact/STATS/dibStat.html

Have questions about the sources above? Please reach out to me here! I am committed to only sharing reliable information, so if I slip, I want to know! Thanks for reading.

*This post was originally published on Spastically Yours some time ago- see it here