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

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.
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~Sonya

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

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

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 Kovaleski(2). 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 leaked(3), 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 ban(4). 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 minority(5) in the United States.

The most obvious and concrete danger that Trump presents to those with disabilities is the repealing of the Affordable Care Act(7), and the block granting medicaid(9). 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 model(8) if I only saw ableist oppression through the lens of healthcare. Like most Republicans before him, Trump plans to cut social welfare services(9), 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 2016(10).

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

Dearest Able-bodied homie,

By virtue of the fact that I have Cerebral Palsy and you do not, we live very different lives. I fall once a week and it’s no biggie; you fall maybe once a month and it’s humiliating, hilarious, or both. I couldn’t put my own socks on until I was 12; you were way ahead of me. But even beyond the scars on my legs that are foreign to your two blank canvases, we are probably very different. I’m a white Jewish 19 year old queer cisgender woman in college, and I’m guessing you don’t fit that exact description. So this is me reaching across the great divide of human experience, because I’ve noticed something peculiar! You’ve been quite nervous around me, and those with bodies similar to mine, for quite some time now, and I’m here to let ya know that I see you, and there’s honestly nothing to be apprehensive about.

Okay okay okay. for fear of seeming convoluted- let me back track. Maybe “nervousness” is too strong a word. There hasn’t been anyone, abled or no, to come into contact with my limp or spastic mannerisms who has run away screaming in terror. At least not as of late. I think what I’m referring to is more of a hesitancy, or a general lack of sureness when it comes to touch, help, or moving together. And it’s, you know, gotten a little…awkward. But it so doesn’t have to be! If one is not used to interacting with peeps with physical disabilities all the time, hesitancy is understandable, and maybe you’re just confused as to what the right/polite/safe option is. So from one disabled writer to one abled reader, here are some pro tips on all the little things that no one explained, or was too afraid to ask.*

Most importantly: hugging, and casual touch in general. Excluding brittle bone disease, and a handful of other very specific/rare medical conditions, you are not going to break your physically disabled friend. This may sound hyperbolic, but this is often what it feels like when someone is coming in for a hug but then barely even touches me with the most ginger of arms, and we hang there awkwardly in an almost hug. If we have reason to make physical contact, most likely joy is a motivator in some sense, so my heart sinks when you then arbitrarily hold back your joy. It make seem small, but I swear to you it happens all. The. Time. Only once have I actually tripped because someone was hugging me with too much force, and that had less to do with my having CP, and more to do with the other person being four. And, in the unlikely circumstance that you do make me wobble, than the worst that happens is I fall, and I get up again and life goes on. In my experience, people with physical disabilities are more resilient, because our bodies are put through more in the day to day. In this way, pain is not an end or something to stop me from living my life, but an inevitable part of a larger journey. If you do knock someone over, whether it be because of hugging or anything else, please don’t make a scene. Life goes on, and you attracting a crowd only escalates the situation and brings attention to the fallen person that they may not want.

This “hugging hesitancy”, if you will, extends to touch more generally. I cannot tell you how many time someone has reached out to put a hand on my shoulder or my knee, but then awkwardly stops themselves before there hand actually reaches me. I can’t really put my finger on this, but the frequency of this experience is what really motivated me to write this. I’ve seen it happen to my other friends with visible disabilities as well. What is so disconcerting about this, is that it makes me feel untouchable, like there is a Palsy forcefield around me blocking even the most pedestrian touch. Again, your friendly gesture isn’t going to make me explode, which you know rationally.

I’ve seen this truth be even more prominent for people who use wheelchairs; just because a person is sitting down doesn’t mean they don’t also desire touch, or notice when you’re deliberately choosing not to make that connection. And at the end of the day, a wheelchair is just a chair, with wheels. That probably sounds so obvious, but in a society where so much meaning is tacked onto one item, it’s important to keep in mind that a wheelchair is just a tool that can be helpful for some people. To hug a person who is sitting down, simply bend down and hug them around the shoulders. Follow their lead. And if you can, get to the other person’s level when talking to them. Again, it may seem like small thing, but the effect of spending one’s day to day staring up at others can be staggering in terms of a person’s self image, communication skills, and expectations for relationships. Asking about things like touch may feel difficult or awkward, but communicating a little goes a long way, and helps foster a culture of consent**. Asking someone what their most comfortable with, regardless of ability status, shows that you care about them. Asking these questions privately as opposed to in front of others is always a good idea.

To you, abled homie, who has most likely never noticed the nuances of this interaction, such a casual thing may seem meaningless. But when you think about it, this phenomena directly correlates to stigma and a similar hesitancy around romantic relationships and sex with those with physical disabilities. If a subconscious bias of fragility or “untouchableness” is present, the likelihood of moving toward romance and/or sex is less, and that progression is slower and (probably) more frustrating. But that’s a whole other letter. For now, please please just try to keep in mind that you ain’t gonna break us, and while there are always those who don’t want to be touched, disabled people are just as much here for the hug as you are.

Today, this is where she stands

~Sonya

*I am one human, with one physical disability, who only has her experience to speak from. This advice is not going to “work” in 100% of all situations ever, but hopefully it will be generally applicable in most situations, and you can use your noggin to infer from there.

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

Yesterday was International Day of People with Disabilities! Is it a holiday? A regular Saturday? I’m not sure. What does one say to peeps with disabilities to recognize today? The possibilities are endless. I do know, though, that I have not 1, not 2, but 3 disabilities! Lately I’ve been reflecting more deeply on what it meant to grow up as a child with disabilities, and how came to where I am.

If I could go back and have a day with my five year old self, there is so much I would say. I would show her The Souls of our Feet, a film on disability that I made a couple of years ago, and  one of the accomplishments I take most pride in. Maybe a five year old wouldn’t understand it, but I could explain, we could discuss all that is brought up, and what’s already on her mind concerning the complexities of having Cerebral Palsy. I’d read this blog to her and show her that people are putting language to something that can feel so overwhelming.

I would bring her to see Shoes Off, a movement piece I’ve been working on that actually opens today. It might show her all the ways in which we too can dance, and that movement can be beautiful instead of a chore. I would bring her to a Phamaly show and introduce her to the amazing community I get to be a part of! Phamaly is the only professional theatre company in the world completely made up of actors with disabilities. I had the opportunity to intern with them this summer in Denver, Colorado, and it was the most incredible and fullfilling experience. Never before had I understood what it meant to have such a concentrated community of people with disabilities, and I wish I had known sooner. I would bring her to Emerson to introduce her to all the incredible allies here, so that she could learn to distinguish a truly supportive abled person from everyone else, and know at base that there are supportive abled bodied people, because it took me a hot minute to find them. I would take her for a walk to show her how far we’ve come, how smoothly steps are taken. Maybe that would give her something to look forward to when being pushed, and pushed, and pushed. It seemed like there was so much emphasis on making me “better”- what was wrong with me in the now? I hated physical therapy, and how hard I was made to work, when it was in fact that hard work that has gotten me to my current state of self sufficiency.

I would tell her she is beautiful, and that there is actually something quite pretty about CP. She won’t understand this in the moment; it’s something I had to learn for myself. But hearing it in this context might do her some good. Then, I would show her my scars, and warn her it’s going to hurt and be hard, and answer her questions. and tell her that people are going to tell her “no” but she’ll do it anyway. Her is voice is not too big, even when her sound seems to echo off of silent walls. In that vein, I’d tell her the endless meetings she’ll be sitting in soon are going to feel like the end of the world but they are not. I’d go to her exhausted parents and tell them they’re doing a good job, making the right decisions. I’d tell them thank you.

Why is the International Day of People with Disabilities important to you? I’d love to hear!

Today, this is where she stands.

~Sonya

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

Young women tend to travel in packs, I’ve found. But for as long as I’ve been a young woman, I have never traveled in a pack. Walks to and from places are often walks of one, elevator rides are many times me, myself, and I in a moving box. I’ve known for a long time that my relative packlessness is because of my disability. As an adolescent, I internalized this to mean that I am lonely as a direct result of having disabilities. But, what I’ve come to realize is that my being alone does not truly constitute loneliness, but it is a huge part of my reality because in having the body I have, I don’t possess the privilege to live on the able-bodied schedule in the day to day.

The most literal example of this is when I leave class with a friend, and we are walking together, and then they see the time, and apologize profusely and say “Im really really sorry, but I have to go” “It’s okay” I say. Their pace quickens, and we separate. And I mean it when I say it’s okay; I’ve developed an understanding that my pace is just different than those around me, so while I make time for that difference, not everyone else can because they don’t engineer their day the same way. And sometimes, I wonder if they know that on occasion I also really “need to go” as in I’m late or in a rush, but ultimately only have the option to go as fast as I already am. To me, it is second nature to think about commitments in terms of how long it’s going to take me to get from place to place. How much I can stuff into my day, and what that stuff is, fundamentally differs from that of the college student without CP or hypoglycemia.

But the necessity of my packlessness goes beyond walking at a different pace, and stems from very specific self care needs that can be difficult to communicate to those who aren’t used to that level of planning. Living busily with hypoglycemia means frequent eating often happens on the go, or I sit for ten minutes and run. While this is not uncommon for college students in general, they can often adjust when these quick eat-and-run’s happen to the schedule of one another, because their blood sugar isn’t going to plummet if they don’t eat every three hours, and because they can go from place to place quickly. In thinking about what/how to eat, I often have to think about what the closest on campus eatery is to where I’m going next, even though the others are only a half a block away. Because for me, the elevator rides, seemingly short walk, and actually getting my food can be the difference between on time and late. Others can expedite this process by power walking, bounding down steps, and smoother fine motor skills to organize what they’re carrying. To clarify, I’m not saying I wish I could do these things; I’m observing objective differences in the mundane as the differences they are.

Once in a rather intense moment in an acting class doing individual work, my instructor advised me to live in the moment more. “Do you plan a lot?” she asked gently. “Yes”. “Well, you should try throwing plans out the window. No more planning for later. Just go moment by moment”. I resisted the urge to roll my eyes and reminded myself that this was to be taken in the context of acting, which should ideally be a series of fresh actions based on momentary impulses. But in the context of the rest of my life, I had to stop myself from laughing at the size of this contradiction. Personal organization, and my ability to plan for myself makes or breaks my living in a world not built for my body. It may sound dramatic, but it’s no exaggeration when I say that personal hygiene, keeping a clean living space, timelines, academic success, socializing, eating, and energy expenditure all hinge on specific choices that I make for myself. Often, by virtue of living in an abled-dominated world, I am alone in making those choices.

Another specific example of this happened just a few days ago: I’m walking to a class that’s on the second floor of a tall building close by. The class starts in 10 minutes, and I run into a friend in the class on the way. “I need caffeine” she says. “Want to come to Starbucks with me?” “You’re not coming to class?” I ask, visibly confused. “Class isn’t for 10 minutes!” I pause, slightly dumbfounded that she can get to Starbucks and class in 10 minutes. It was going to take me 10 minutes just to get into the classroom. Once I got to the building, I’d have to wait in the long line of students for the elevator, just to go up one floor. I was always the only one on the elevator to get of at the second floor, because the others going there, like my friend, could skip the lines and leap up the flight of steps despite the rush of students coming in the opposite direction. Then, once I’m finally on the second floor after waiting in line for an undetermined amount of time to squish into an elevator, I have to wedge open a heavy door, and navigate the tight seating in a small classroom, backpack and all, and then get my stuff out of said backpack and onto the desk, ready to work, all in 10 minutes. “That’s okay, you go ahead” I say to my friend, despite really wanting to go with her. “I have to catch the elevator, and you know the Ansin line.” A realization washes over her. “OH, right!” she exclaims. “Of course, I’ll see you in class!” “See you in class” I respond. We part ways.

These times throughout the day add up. And in some ways, it can snowball into more obvious social isolation, because often more concrete social plans are made casually in passing, or at meals, so if I’m not present for those conversations, I’m left out. The seemingly obvious solution to a lot of this is to ask my close friends to adjust to my schedule. But it’s not that simple- I ask a lot of the world around me, or so it feels because I’m constantly put in place to ask for what I need. So it’s easy to rationalize with myself that this is unimportant. I’m social, I have friends, and go out regularly. So in a sense, it’s like “who cares if I eat alone?” But if I’m being honest, I care. The specificity with which I live my life, and past experiences of literally and metaphorically being left behind has lent itself to a lot of social anxiety. So in many ways, I’ve accepted my packlessness as a fact- sometimes just because always having to ask is exhausting and can become embarrassing over time.

It’s unrealistic to ask able-bodied people to work on my schedule, but something that is feasible though that would be helpful, is, as my social justice friends will say, to ask that they think about which demographic is or isn’t “at the table” and why that may be. This is to say that even if I’m not there when plans are made, the people making the plans would keep in their consciousness “is Sonya in the loop?”, and then act accordingly to keep me in said loop. Maybe there is more I could do to give myself a pack, since there are definitely times I feel that absence. But in the vein of being kind to myself, and not trying to hold the weight of the world on my shoulders (as I sometimes do), I’m going to choose to believe I’m doing my best to balance my needs with my wants, even when that means walking alone.

Today, this is where she stands

~Sonya

​P.S- For more on this topic, check out this article on Everyday feminism about FOMO (Fear Of Missing Out) and disability: http://everydayfeminism.com/2015/12/fear-of-missing-out-ableism/
*This post was originally published on Spastically Yours some time ago- see it here

Have you seen her climb the stairs. Seen her fingers curled around the railing. Seen her foot lift, catch,land, pause. Lift, catch, land, pause. Seen her hoist herself forward, challenging gravity one more time.And then just one more time again, and one more time after that. Seen the effort she exerts now a routine that her body moves into without thought. There’s a reason it’s called a stair well. She can’t feel herself falling, does not know if she’ll remember how to swim upon making contact with the water.
Have you seen people see her climb the stairs. Have you seen a Birdseye view of her climbing their stares as she climbs the stairs. Have you seen them curve around her and apologize as they pass her. Heard the apology that comes out as though they bumped her, though there is no touch. Apologize as though witnessing her ascendance is forbidden. Apologize because they were taught that witnessing her ascendance is forbidden. Have you seen the discomfort in their faces, can you feel in your chest the breath of relief that they let out once they finally pass the taboo of her Lift, catch, land, pause.
Have you ever thought about the girl climbing the stairs. Ever thought that maybe her trek is not a trek at all, not something to be seen, not something to write poetry about. That maybe the struggle on her face is just the position it needs to take so that her body can do its job. That maybe upon getting to the top, there is no confetti cannon, no celebratory gospel choir singing praises in purple robes, she does not pass go, does not collect 200 dollars. That maybe upon reaching the top she just moves to the next part of the life that she has built.
Have you ever wondered what thoughts fill her mind while she climbs. Does it occur to you that the climber has thoughts? She counts in her head the number of people who pass her. Storing the apologies for a book she will write later. She wonders what it must feel like to be desired. Not any of this “what makes you different is what makes you beautiful” bullshit, but what it is like to really be at the center of somebody else’s want. As she climbs the stairs, her mouth is rendered dry but the only thirst she feels cannot be quenched with a cup of water.
Have you ever climbed the stairs with her. Matched the pace of her lift, catch, land, pause. Felt the rhythm ring in your ears as you stay by her side. Move slowly in silence, no words needed to acknowledge the intimacy present. An intimacy that is not necessarily sexual, but is somehow everything. Have you ever listened to her breathing go from steady to deep puffs, have you let yourself breath next to her, with no apology. No worry. No projected struggle. Have you ever lifted your hand to the small of her back as she makes her way upward, not to guide her or because her body is asking for support, but just to touch what others have deemed untouchable, just to let her know that you are there, climbing the stairs.
Today, this is where she stands.
~ Sonya
​
*This was originally posted on Spastically Yours some time ago- see it here

I am 14. My family and I have just gotten back from a folk festival, and my mom yells to me from the next room “You should try on the dress!” I look over to the blue silk knapsack and excitedly pull out the beautiful halter neck my mom gifted me earlier in the day. I undress and slip it on, liking the way the fabric feels against my skin. “Let’s see!” my mom calls again. I walk over to her, standing across from her bed, staring into the mirror hanging next to her on the wall. My face falls. “Ohhh Sonya, it’s so pretty” my moms oozes. “You don’t like it?” She asks when she sees my face. “Not really” I respond hollowly. “It makes my knees look-” My breath catches in my throat. Small, quick tears find their way onto my cheeks. I struggle to find words as my focus stays on the lower part of the dress, where it clings to my bent knees and crumples upon tightly meeting the outline of braces just below. What was supposed to be smooth and polished looks like a crumpled throw blanket. “You don’t have to wear it, honey” my mom says gently, a little surprised by my reaction. “I’m sorry” I say, as I leave the room to change. I don’t put the dress on again.

What it was about the image in the mirror that made me so suddenly emotional is still a mystery five years later. I don’t know what I expected to see, but it wasn’t that- my differences in form so brought to light. In a way, this story may sound unremarkable: teen girl gets upset over an unflattering dress. But for my young self who lived among people with straight knees and no braces, it was an abrupt, uninhibited confrontation that my figure did not and would not mirror all the smooth lines of those around me. This I knew on some level, but that dress was a reality check nonetheless. I knew I had Cerebral Palsy, and I actually had really good spirits about my identity as disabled person in the day to day, for a 14 year old at least. I’d accepted I was never going to wear a pair of Ugg boots that were all the rage two years prior, I accepted shopping trips that would last for hours, trying on piece after piece that hung the wrong way on my tilted hips, and didn’t have any particularly pressing negative generalizations about how I looked, disability and all. But for some reason, having such a vivid image of what that identity looked like in this dress was my tipping point.

It was because of this type of visual confrontation that for years, I couldn’t watch myself on film. When I came onto the screen in home videos, or would appear in the filmings of school plays, I’d find a convenient reason to leave the room, or would just close my eyes and offer small groans. The rhythm of my step next to that of the 50 other Who’s in Seussical echoed a little too loudly, and I was always surprised by how exaggerated my body seemed next to the other 11 year olds. The surprise was most likely the fact that my legs didn’t physically feel bent when I walked, but actually were bent. As one may imagine, this presented a lot of confusion, having been raised to believe there was nothing “wrong” with me. So, having such insecurities seemed to contradict the sense of beauty that many women in my life had consciously tried to cultivate in me. This dillema of “not seeing myself as disabled” raised the (very personal) question: What does it mean to look disabled?

Now safely outside of puberty and the adolescent pressures of middle and high school, I can definitively say that there is really no such thing as “looking” disabled (see: invisible disability, passing). But getting to a place where I truly understand this, and really actually enjoy the body I’ve been given, took a long time and was exhausting in the face of a beauty industry that churned out abled reality like it was going out of style. The short answer to how I found real, non cliché, more-than-a-Dove-ad self love, was by ripping off the band aid and forcing myself into the discomfort of actually looking at myself.

I started small, focusing on my face and my hair. I took note of my big brown eyes and the way my long locks fell when I flipped it against the part. Then, I developed a new tactic: I’d look at my legs each morning, accept that it didn’t mirror how I physically felt I stood or saw myself, and then only consider myself from above the knees in determining whether I “looked good”. Regardless of how I felt about my legs in the grand scheme, they were going to be the same day to day. So without ignoring it entirely, I stopped stressing about the constant, and turned my focus to the variables- the parts of my personal presentation that I could choose. Much of these choices included my CP, because my legs are not the only part of my body affected. This was an imperfect system, but choosing to acknowledge a particular part of me in a limited way let me stop obsessing. I focused on the rest of my body, and consequently, my thoughts on my legs or others perceptions of my legs became a minuscule part of my day.

My latest step in self love has been seeing the crookedness as pretty; finding the lines my body cut in the air as delicate. This started by accident. I was getting out of the shower once about two years ago, when instead of habitually looking at the floor, I lifted my head and looked in the mirror, sort of randomly. I stopped moving, and paused to look at the figure. She stood there in the glass frame without bracing or crutches or anything, and I realized I liked her as a whole. My legs were just a part of a larger whole, and I liked what the two planted feet held up. It helped, I think, that who I saw was post-puberty and post- operations; I liked the curve of my hips, as uneven as they were, I liked the smoothness of my belly, how faded the scars on my legs and hip were, remembering how angry and pink they once looked. My tree stood tall, even if there were some twists in the trunk, and I was no longer startled by the tension or the lopsidedness that stared back at me.

After that, I made a habit to put myself in front of full body mirrors, so that I could see myself in my body’s wholeness as much as possible. I got comfy with nakedness, so that I knew what I looked like in the absence of the shapen shirts and pants that distorted or covered what my body actually looked like. The shapes my body made slowly became routine in my mind. This eventually led to my taking my shoes off in front of others like it was no big thang, because I had an applied understanding that my feet and legs are just feet and legs, and any reaction bigger than that had more to do with the person reacting than my body itself.

Just because I like my body right now doesn’t mean I’m done with the issue of body image. I haven’t found all the answers, and my understanding isn’t complete, wrapped in a bow. More specifically, I’m still grappling with finding peace with how my body and self are seen externally. I’ve been taught that if you have love for yourself, then the world will have love for you too. Don’t get me wrong, I don’t feel “unloved”. But I do think I’m less likely to be seen as a sexual being or a romantic option by virtue of my disability. So, I am learning to find or live without that validation, as so many able-bodied people are. I don’t know if I “see myself with a disability”. But I do know that now, I not only see my body as it is in reality, but that I actually particularly like that reality. Am I 100% happy with how I look all the time? No, of course not. But with some tender love and self care, I generally feel pretty proud of my physical vessel.

Today, this is where she stands

~Sonya

*I originally posted this on Spastically Yours quite some time ago- see it here