Pedagogy of the Confused

Originaly published on the Navigating College blog

I became politically aware when I learned how to say “I don’t understand.” This didn’t happen until I was 20 years old.

There are some things that are harder for me to understand than others. My confusion peaked in freshman year of college, when my Women’s Studies class moved from “101” material into more abstract, jargon-heavy content. Words seemed to fly through the air without being anchored to anything so mundane as a stable definition. At the same time, I realized that what I had been taught in high school about writing thesis statements no longer applied to college: I was going to have to relearn the definition of a thesis. This would have been fine, except for the fact that I didn’t understand any of the definitions that people were giving me.

I was filled with shame about this. What kind of college student didn’t know what a thesis was? How had an introductory Women’s Studies class got so beyond me? Did I really deserve to be at college? So if I had to ask for clarification, I often pretended to “get it” after a cursory explanation, when really I was still confused.

My problem with admitting confusion was that I had internalized the idea that my worth as a student was based on my ability to understand things within the same timeframe that others did. I did not feel entitled to ask for clarification when I was confused, because this would be admitting to having failed in my duty to understand. I wanted to tell the truth about what I was thinking, so that I could learn more thoroughly. But I was afraid of being thought of as unfit to be at college, because I had internalized the idea that good students didn’t get as confused as I do.

This semester, we read Pedagogy of the Oppressed in my Education class. The author, Paulo Freire, talks about the process through which an oppressed person learns about their oppression, a process he calls “conscientization.” I underwent this process in my freshman year, and it happened because I was so very confused. After I started hitting cognitive dead ends in my classes, I got online and started reading. I learned about privilege, ableism, disability rights. I became conscious of my oppression as a disabled person. And I began to see that the ideas about what a student should be – the ideas that had caused me so much shame – were not inherent in the universe. They were a product of prejudice.

Becoming politically aware meant that I no longer felt so terrible about not fitting into society’s idea of what a student should be. I started to think that perhaps society should widen its idea of a student enough to include me. I started to think that I deserved to understand the material, even if my process was slower than that of some of my classmates. Learning about disability rights has empowered me to be in control of my education, to ask questions without shame, to sometimes try to change my environment instead of always trying to change myself. And I have learned to utter the words “I don’t understand,” without apology and in a loud, clear voice.

Quiet Hall Woes

When it's midnight on a quiet hall and your next-door neighbor, who is ill with Random Fever Illness and has mostly lost her voice, knocks on your door and asks politely whether you and your guest will please stop singing along to YouTube videos because she can hear you, the correct response is a quick apology followed by compliance. The correct response is most emphatically not to turn to your friend and burst into giggles, then turn back to your next-door neighbor and say "We half-expected this."

A woman with Multiple Chemical Sensitivity told me once that people sometimes like to "test" her by wearing scented products around her to see whether they will trigger an athsma attack or some other kind of reaction, and then when they inevitably do, these people will say something like, "Sorry, I worried that might happen."

If you were aware of the possibility of that happening, WHY would you do the thing that causes it to happen?

Okay, some background on next-door-neighbor girl, who I'm going to call Judy. Judy is a very nice person and is usually really pleasant to me. But she does enjoy lound noises, and this means that several times this year, I have had to knock on her door and ask her to turn down her music/ flute playing/ midnight singing. And she always complies with my request, as she did tonight, though sometimes not without passive-aggressive comments. (To be fair, I have to add that I was definitely passive-aggressive earlier today when I responded to her friends' shrieks of laughter by asking if they were okay.)

And I had sort of thought that Judy's repeated rule-breaking and noise-making was just done out of her desire to hear loud sounds and not with any thought of me. I didn't judge her for this because everyone sometimes does things that they think are fun without considering what the implications will be for other people. But when she said to me -- through giggles! -- "We half-expected this"... That kind of changed my mind.

Because if you're doing something and thinking "This will probably make the person living next to me feel so bad that she is moved to ask me to stop," isn't the right response to refrain from doing that thing?

This might be unfair to Judy for a number of reasons. Probably the most important reason I might be shortchanging her is that, while I have asked her on several occasions to turn down her noise, I have never explained my disability or sensory issues to her. I have never told her that last year I was trapped in my room for four hours because loud music from the floor above messed with my brain so much that I couldn't remember how to get out. I have never explained to her that even a faint noise, even a constant noise, even a noise that she would easily tune out can make me feel like six kinds of shit. I've never told her that from my room I can hear the house fellow's baby crying and cars backing up and people taking showers and pulling paper towels from the paper towel dispenser, and layering her singing over all this -- at midnight, when I'm sick and exhausted and even more lacking in spoons than usual -- is just too much. I probably should tell her all this, and maybe I will, but at the same time I feel like I shouldn't have to.

Because this is a quiet hall and I chose to live on a quiet hall for a reason, and that reason is that in a quiet hall you are required to keep noise down to a level where it can't be heard in the hallway or other rooms. And you're required to comply with requests to turn down your noise.

I feel like people who want to be loud at all hours but still choose to live on quiet halls are like non-disabled people who use disabled parking spaces. They can live anywhere they fucking want; I can only live here.

You are also my brain: adventures in (in)(ter)dependent living

I’m at home right now and thinking, as I always do when I’m at home, about my brain.

I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.

But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:

At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).

At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.

Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.

There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.

At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.

I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.

Now what do I do about it?

Guilt-allaying things people tell me over the internet

So I think I've mentioned before that I deal with a lot of guilt due to the amount of late work I turn in in my classes, or the fact that I can't do all my reading -- various lapses of academic performance. But lately people have been saying awesome things, on chat or in emails or in blog posts that I read, that help me put the guilt aside for a little bit. I save these communications, and I take them out and look at them later, and I remind myself that people love me and I am okay.


"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."
-Asher

“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend

"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad

"All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you."
-Amanda, in an amazing post about executive dysfunction

I am a limited resource and I don't know what to do about it

I’ve found a new way to be productive and it’s exhausting me.

I’m not sure if it’s more or less exhausting than the potent combination of guilt and anxiety produced by procrastination – probably it’s just a different kind of draining.

Today, after two hours cloistered in a library cubicle, working diligently on a late paper, I got stuck on the stairs to the ground floor. A girl passed me on the landing. She said something , and I couldn’t hear what. I had my headphones on, but with the cord yanked out, so I just heard muffled quiet, and felt pressure. The girl glanced back at me a few times. I remembered how to climb the stairs.

Outside of the library, I stood rocking on my heels, getting cold, blowing out clouds, stimming out on stars. It took me a while to gather the energy to walk to my dorm. I felt I’d hit some kind of wall. I thought, I have come to the end of my brain. In high school I had some arrogant idea that my brain was somehow infinite, and only my time was limited.

The moisture on the ground was turning into frost, creating a sparkling effect that first dazzled and then overwhelmed me.

I’m pretty sure I used the last of my spoons to get to my room, or perhaps the penultimate spoon. I have a backlog of German homework to do, but I can’t do it anymore, so now I’m calculating how early I have to get up this morning, how best to bury and wrap my alarm to keep my sleep-deprived self from simply shutting it off and giving up. I’m at that point where I’m so tired that the steps between me and sleep – taking things off the bed, turning off the light, setting and wrapping the clock – seem insurmountable.

So I’m not sleeping. I’m thinking about thinking, worrying about worrying, writing about writing.

Better Living Through Flowcharts

Here’s a moment from Glee that stuck with me for a long time. Some of the main characters are talking in the choir room, and they look over and see that Brittany, the show’s “dumb blond,” has been sitting there the whole time. When they ask her what she’s doing there, she says that she took some cold medicine and fell asleep, and when she woke up, “I forgot how to leave.” Cue laughter as viewers think to themselves, “Brittany’s so dumb, she forgets how to leave a room.”

I didn’t laugh when I saw this, because this is actually something that I regularly do.

This is a bit difficult to explain. The concept of how to leave a room is something that I understand at all times, but within that concept there are tiny, practical steps that I have to keep lined up in my head. If I don’t have to take anything with me, the steps might simply be “stand up, walk to door, open door.” (This can create its own set of problems if I’m having difficulty making my body respond to the commands of my brain, which does occasionally happen.) But if I do have to take things with me, I have to organize and gather my things before I can leave. If I have to get dressed, or even leave and get showered and come back and get dressed, and leave and brush my teeth and come back and then gather my things – that’s a lot of steps.

Here’s what happens: I’m in my room in the morning, and I’m tired because I haven’t gotten enough sleep, and I can’t get all the steps lined up right. Maybe I’ve just removed my pajama top and I can’t remember what to do. Some part of my brain knows that the next step is to put on a bathrobe before proceeding to the shower, but I’m having trouble accessing that information. In this foggy state, I look around the room and I see my laptop. Aha! I can check all my favorite blogs! Ten or twenty minutes later, I realize that my class starts pretty soon and I haven’t even put my bathrobe on.

That’s pretty much a typical morning for me. Under more adverse circumstances, the problem gets worse. One memorable Saturday morning last semester, I awoke to pounding music echoing through my ceiling. That morning, the process of showering, dressing, and leaving took four hours. That’s four hours spent mostly in my room, crying in frustration because the noise was so awful and I wanted more than anything to go away, but I didn’t know how.

I was telling my girlfriend about the problem of getting stuck in my room, and she came up with an ingenious solution. (By the way, guys, this is why college is awesome: when I tell my friends about stuff like this, they are supportive and even come up with ideas instead of, say, laughing nervously or calling me a freak.) She proposed that if I made myself a list of the steps necessary to exit the room, I could reference this list whenever I was confused.

Because I am a giant nerd, the proposed list ended up as a flowchart:


[Image: a hand-drawn flow chart which gives the viewer detailed instructions in how to leave the room, with separate paths for showering and not showering, and later two different ways to pack for going out.]

This is currently taped to the door of my closet and I’ve referenced it several times. Hopefully it will help me keep on track in the mornings and get out of the room in an emergency. I’m very happy with it. I think part of learning to live more independently is finding ways to make my life easier.

Limitations

I had great plans for this year.

Last semester, I started out on a bad note, feeling stuck and overwhelmed and not getting any of my readings done. This year, I decided I would start out the semester more organized. I would plan better, and overcome my anxiety so that I could be prepared for my classes. Instead of feeling disconnected from the subjects I was studying, I would do all my readings and feel fully engaged. I would emerge knowledgeable and triumphant. It was going to be amazing.

So I started my semester with the goal of preparing for class. And for maybe two glorious weeks, I came to all my classes with all or most of the reading done, knowing exactly what we were going to be talking about and prepared to make insightful comments. Finally, I felt like a good student, a good person.

I did some of this by being more organized and planning better, and this was definitely a good thing. But ultimately, here is where the extra reading time was coming out of:

- down time, relaxing by myself
- social time with friends
- time spent doing laundry and unpacking
- sleep

As a result of this, the wonderful feeling of being a good student came with some unpleasant side effects. I felt unhappy, and sort of purposeless, with so much time spent cramming for class. I got more fatigued, until last Thursday I fell asleep in the middle of a really fascinating lecture. And I felt so mentally tired that I spent most of the weekend lying on my bed listening to an audiobook, panicking about getting my work done but somehow unable to attend to it. Halfway through Saturday I decided that if I wasn’t going to do work, I should at least get up and clean my room. I then continued to lie on my bed, despairing of my ability to do things.

Three weeks into the school year, I successfully burnt myself out.

The lesson learned from this lovely episode is that I can’t do all my reading. I don’t have the time to devote to it, the brainpower to process it all, or the emotional strength to deal a life of academic isolation.

I feel guilty about this – like I’m a bad student, a slacker, a cheater. I’m not the scholar I wanted to be. I also feel sad when I think about what I’m missing. I mean, in one of my history classes we’re studying Nazi Germany, a subject upon which I have spent countless hours perseverating. I want to do this reading, and I’m sad that I can’t.

But at the same time, I feel kind of liberated. I don’t have to walk around haunted by the specter of chapters unread, thinking I’m a failure, convincing myself I really will read those last 50 pages and then falling short. I can admit to myself that I won’t get around to reading those 50 pages, or the introduction to the next history text, or the poem we’ll be looking at in German on Friday. I can go out for dinner with friends, or read blogs, or do my fucking laundry, even if I haven’t done my reading. And I shouldn’t feel guilty about it (though I do). I know that by not finishing my reading, I’m preserving my brain to fight another day.

In Which Everything Seems Pretty Awful

The fall semester has begun and my executive dysfunction is seriously bothering me.

I’m currently being screwed over by my lapse in planning during class registration last semester. At that point, I somehow thought that I could take only one history class in the fall. Upon arriving at school, I remembered that I actually need a major and perhaps I should check up on the major requirements, and I discovered that I’m seriously behind in terms of history coursework. Additionally, I kind of want an education correlate in case I decide to go into special education or a similar field.

This means that I’m scrambling to register for new classes, which takes up a lot of my time, and if I get into new classes I’ll be behind on the readings for those classes, and I’ll have to catch up, which will take up a lot more of my time.

I should have planned for this last semester. I should have known I would need more history classes. I should have signed up to get field work credit for the volunteer work I did over the summer. I shouldn’t be writing this post right now.

I’d forgotten how much work I do at college. I have to work to make myself work. This might sound frivolous and lazy, as though I just can’t muster up the willpower to overcome a hedonistic urge to enjoy myself when I should be working. In fact, if you were to check up on me while I’m attempting to make myself do work, you would find me in distress as I attempt to focus on a task but somehow always end up doing something else. The guilt and anxiety that this produces are problems in their own right, and the worse I feel the harder it is for me to focus. Can you spot a pattern here? If you picked “downward spiral,” you’re correct.

As I write this, I am looking at the pile of clothing that I have yet to fold and put away, the bags I haven’t unpacked, the bookshelf I haven’t assembled. As I write this, I should be doing my German exercises, or reading for my history class. Yet somehow I ended up writing this, almost without noticing that I was beginning to do something counterproductive.

Maybe in a few days things will be sorted out. Maybe I’ll find new classes. Maybe this semester won’t end with gloom and doom and late papers in every class and the academic apocalypse. Maybe I’ll learn to get things done on time. Maybe I’ll get more control of my life. Until then, I’ll be playing catch-up. Again.

About Stimming

I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.

But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.

I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.

But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.

I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.

But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.

Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.

And then I went to college.

At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.

I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.

Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.

I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.

I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.

Anthropology

(You can click this to make it bigger if you like)

[Image description: a drawn comic in which I stand facing a lanky college guy. The guy is holding a cigarette and wearing a T-shirt which reads "I am totally not a hipster". I am holding a microphone, and a speech bubble indicates that I am saying to him, "May I have a moment of your time to ask you about irony?"]


This is a comic that I did about the challenges of interacting with people at college. Many college students, especially (but not exclusively) people who might be identified as hipsters, are really into irony. They are so ironic that they can even manage to be sincere in an ironic way. I'm not quite sure how that works.

Like a lot of people on the autism spectrum, I can have problems telling when other people are being ironic. I'm pretty good with plain old sarcasm (when someone says one thing but mean the opposite), but I can't get the hang of the meta-irony that hipsters use. Sometimes I have to ask people "What did you mean by that?" or "If you were going to express the same sentiments, but use words that were true, what would you say?"

This creates all kinds of awkward situations because people really aren't used to being asked these kinds of questions. One classmate began laughing, rolling her eyes, and exchanging looks with her friends when I asked her to clarify an ironic comment. And often, when I ask people what they mean by something they have said, they tell me that they don't know. This leaves me wondering: Do people really not know what they mean by what they say?

Do I fail to understand hipsters because they don't understand themselves?

Will other people ever make sense to me?