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
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