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