My (In)Visible Disability: The Lay of the Land

It’s occurred to me that I haven’t really talked about what my day-to-day life is like, with my cognitive disability. Previously, I’ve made abstract, generalized statements about what I tend to do, without describing what this looks like in practice; I’ve said time and again that my disability makes me think differently, but I never explained how my disability alters my perception in tangible ways. Even when I think I’m being specific about my disability, my descriptions often come off theoretical and rather removed, like I’m writing an abstract for a dissertation, rather than narrating my story. My own lack of clarity f me, not only because it goes against good writing practices, but it does no justice to the struggles, victories, and the irrefutable realness of my day-to-day life.

But I have to try — trying, that’s how it all started, right?

Yesterday, I chased out the elephant in the room. Today, I’m going to shatter the fourth wall.

Last autumn, my friend Natasha and I decided to grab some lunch at TCNJ’s dining hall, like we had been doing for the last several weeks. As we fumbled through a sea of people to find an empty seat, Natasha saw that there were banners. “It must be for homecoming.”

“Banners? Where?” I said.

“Up there,” she pointed.

I swiveled around, and was greeted by colorful pennants dangling from the industrial, dimly-lit ceiling.

“Is it new?” I looked down.

“Yes!”

She was taken aback by my sheer oblivion. Natasha, who has a visual impairment, was surprised that someone can have 20/20 vision (at least, with glasses) and yet miss such an obvious change in their environment. Not only did I not notice the banners on my own, I was unable to determine whether these were new installations or if they had been there all along. In the 50+ days I’ve been attending the college, I never paid any mind to what the ceiling looked like.

Things like that slip by me, because I can only pay attention to a few things at once. Very frequently, the world around me disappears. I have less control over my thoughts: I’m just as likely to be distracted by the chatter in my head as I am trying to quiet it. A wide array of mundane tasks, from keeping a conversation going to making sure that spaghetti doesn’t slip past my fork, require immense concentration. Whatever the reason may be, I explained to Natasha, my brain is almost always working overtime, and that leaves little room for the sort of situational awareness that comes easily to so many other people.

I’ve recounted the Banner Incident everywhere: at an ADHD support group, with a professor as I reviewed my accommodation memo with them, and with Natasha herself when my inattention lent itself to other baffling behaviors. I think the fact that I couldn’t see what someone with a visual impairment could see illustrates the real and serious impact my neurological differences have.

Since I’m not very attuned to my surroundings, I’ve always found it difficult to pick upon things other people did with ease. When I was in elementary school, I always forgot to turn in my homework even when I completed it on time, because I didn’t notice my classmates leaving their seat to turn in their homework. To this day, I don’t always notice the events unfolding outside of my peripheral vision. When I have to acclimate to a new environment, I can’t learn through casual observation alone; I’ll sometimes need explicit instruction, and I make this clear to anyone who works with me.

Various idioms can be used to describe how I navigate the world, such as that I can’t see the forest for the trees or that I walk around with perpetual tunnel vision. But I’d rather you not use these metaphors, because they don’t capture all that I’m capable of.

I may navigate my physical surroundings in a shortsighted way, but that doesn’t mean that my outlook towards life is shortsighted.

Far from it, in fact. I’m often overwhelmed by my ability to process information at such a large scale.

My inner voice looks much different than most other people’s. Rather than talking myself through everything, my mind switches through flashbacks, hypothetical scenarios, and short phases.

When I speak, I’m not editing my thoughts — I’m translating it from scratch. To many people, I appear to lack a social filter, but it’s not that I don’t have one. It’s just very hard for me to “run through” what I’m about to say before I speak, unless I’m writing. Often, people would assume that I must not know what I did ‘wrong’ — or fathom why— when I accidentally upset or annoy other people, but that’s not true. I’m taken aback by what falls out of my own mouth, all the damn time!

Most of my fears, hopes, and motives are subconscious. I understand my thought processes by working my way backwards. I read between the lines, looking for the narratives that lie behind these loosely related montages. I guess I’m armchair psychoanalyzing myself in a sense, but it’s not so much imagining or theorizing as it is translating — looking at what I’m feeling at any given moment and telling myself: Whoa, whoa, whoa, slow down… Care to elaborate a little more? It’s also not nearly as hard as it may seem. My instinct takes over. I know it right away when I’ve managed to put a finger on what I was thinking, because I get that unmistakable feeling of epiphany: YESSSSS THAT’S IT. That’s exactly what I was thinking!

Due to the non-linear nature of my thinking, I see the world like a super-zoomed-out camera: I can see the big picture, but I can’t seem to make out the finer points or focus on one thing at a time. While many situations call us to look at the overarching ideas rather than small minutiae, my brain takes it to a challenging extreme.

Even though autistic people are often described as detail-oriented, I’m the complete opposite. When a friend is speaking to me, I find it very difficult to retain any concrete facts they may share with me. With great effort, I can keep track of the bare-bones plot elements needed to understand someone’s emotional state, but once I recognize the sentiment behind what is being said, much of the other information scatters from my short term memory into my trash pile. My friends understand that I know them as human beings, even though I often get their life events all mixed up. That requires a level of faith that I don’t take for granted.

Now that I think about it, it makes perfect sense that I keep falling back on abstruse, theoretical language to describe my disability. Some writers tell blow-by-blow accounts like they’re reciting the alphabet; I am not one of them. Since I’m not detail-oriented, my recollections of events tend to be blurry. I have vivid memories of dramatic, pivotal moments in my life, but the routine, everyday stuff tend to slip away. The thing is, the biggest impact of my disability reside in mundane, day-to-day interactions, and I wish it was easier for me to shed light on these.

Though my detail-blindness can be incredibly frustrating, it gives me the ability to skim through the purviews, making unusual leaps that lead to creative innovation.

That’s the other thing about having a zoomed-out view of life: I can go from Point A and Point Z in a flash of light. I always describe my way of thinking as non-linear.

My brain makes connections that aren’t always obvious to others. A several months ago, I attended a lecture about ethical frameworks. The professor listed three ways we can determine whether a decision is ethical or not: we can ask ourselves what kind of person would perform this action (virtue ethics), what the outcome would be (utilitarianism), or whether the action itself would adhere to pre-determined moral duties (deontology). When the professor opened the floor up for discussion, I suggested that these ethical frameworks serve as the basis of commonly used persuasive strategies: ethos (appeal to credibility), logos (appeal to logics), and pathos (appeal to emotion), respectively. My professor nodded and restated something that he had said earlier, but didn’t directly comment on the comparison I was making. Later, I rehashed the class discussion with a friend that was also in that class. “I knew what you meant, but it was a bit of a reach,” she told me.

“I wonder if the other people in the class knew what I meant,” I prodded.

“Someone who doesn’t know you would’ve thought that you weren’t paying attention.” She looked at me apologetically, “Or that you were just… really thick.”

When I revisited this conversation months later, I couldn’t help but to feel a bit angry. Not at my friend, or even at the people who would assume that I was not grasping the materials, but at society, for perpetuating such a narrow view of intelligence. My classmates probably would’ve figured out on their own that I had a disability, but hypothetically, if they didn’t realize, and found out later — would things change for the better? Upon finding out that I have a diagnosed disability, they may go from thinking, “This institution is such a joke, she probably BS’d her way onto here,” to “Poor thing, she doesn’t understand,” but that’s not as big of a difference that one may think it is. They would still be holding onto deep-rooted idea that different is wrong, this time cloaked in an overtone of sympathy.

I haven’t let that deter me from embracing my atypical mind. I also think that many people appreciate my unmethodical way of thinking, whether they realize it or not. In high school, I was never the traditional, straight-As student, but I consistently scored high in research papers. Comparative reading came pretty easily to me. I’m quick to identify the main themes, and map out all the ways in which they intersect, depart from, and elaborated upon one other, all at the same time. As I grew older, I developed an almost acrobatic ability to reframe. I became the person who says, “Maybe we’re asking the wrong question.” I became the person who tries to bridge divides by cutting through the layers and getting at what each party is really trying to say, which usually ends up being pretty similar. I like the way I see things, and I have a feeling that a lot of it comes from the divergent thinking intrinsic to my disability. You might picture me saying this with a jaded grimace, given all the serious and not benign challenges that come with my disability, but I say that with fascination. Believe it or not, disability doesn’t always have to be negative.

I always gravitated towards writing as a mean of self-expression, because it’s in a format that works best with my brain.

In fleeting interactions, my sense of insight is often overshadowed by my garbled words and flighty demeanor. Writing opens up a breadth of time and space to put my thoughts into words.

When I’m typing on my computer, I feel incandescently powerful (and yes, I exclusively use electronic devices to write, because I have the tendency to skip from one sentence to another, before they are even finished). This how I leverage the strengths and mitigate the weaknesses comes with my way of thinking.

Granted, writing doesn’t eradicate all the challenges that come with my disability. I’ve always struggled to write in a clear, concise way, and for years, my therapist was the only person who could comprehend what I had written. Even now, I constantly get frustrated trying to streamline my omnidirectional mental map into into a string of sentences. Every day, I’m amazed by my own tenacity. I’m just glad that I found what works for me. What more could I ask for?

Though my brain sees connections with rapid simultaneity, many of my other mental processes are slow and painstaking. I’m sure I’ve mentioned this before, but my processing speed tested in the lower 4th percentile. Let that sink in (pun unintended?).

My slow processing speed often masquerades as pseudo-listening. There are times where I appear to be following along perfectly fine, nodding and saying uh huh and the whole enchilada, just to later ask someone to repeat themselves. To some people, this can read as: I was listening — JUST KIDDING! I couldn’t care less about what you were saying but wanted to shut you up so I went along. Say what now? In reality, what I would say is: I tried very hard to pay attention, but I got distracted, and didn’t even realize I missed something until now. Or, more likely: I was paying attention, but I couldn’t think fast enough.

While many people’s processing sync up with the expected cadence of nodding and the uh huhs, mine tend to lag behind. When someone is speaking to me, I always nod and interject, both out of habit and to signal that I care, but sometimes I’m second or two behind in registering what is being said. Sometimes, I catch up by the time it’s my turn to speak, but other times, I end up missing a sizable chunks of information. My brain can very much feel like a direly understaffed assembly line.

When I fall too far behind, I can get so overwhelmed that my mind goes completely blank. Nothing registers, no matter how many times it is repeated to me. I may hear the sound of someone talking, but the meaning doesn’t penetrate.

Some people have characterized these episodes as “shutting down,” but I don’t like that phrase, because it has an emotionally charged connotation: oh, she’s already given up. She’s too busy thinking negative thoughts.

The truth is, my brain physically cannot process the sheer onslaught of information.

Likewise, my disability comes with a form of mind-body-disconnect that isn’t psychosomatic. I used to dissociate pretty heavily, and the combination of psych meds, talk therapy, and meditation have helped immensely. But even when I feel safe, present, and grounded in my body (as I usually do these days, thank goodness), my body and my mind doesn’t always properly exchange signals. It has less to do with how I feel at the moment, and more to do with how I’m wired mechanically.

To put simply: I’m clinically klutzy. I have a hard time navigating crowded environments and I even find housekeeping tasks difficult. I love music, but I don’t love dancing. I used to do performing arts as a kid, and I always stuck out like a sore thumb whenever I had to dance because I couldn’t stay on beat or gesticulate properly. Free dancing makes me want to crawl out of my skin, because anything other than lightly bopping my head and shifting from feet to feet doesn’t come naturally to me. Still, I haven’t let that stop me from attending concerts and parties and being a riot.

A diminished motor skills is also responsible for my speech impediment, which fluctuates in severity. I know that I speak in an odd timbre. I also tend to slur together my syllables, and I easily run out of breathe. I have to concentrate on what I’m doing with my lips, tongue, throat, and jaw. I sometimes over-correct my speech, causing my voice to change throughout the day. If I’m multi-tasking or have little energy, I lose control.

Ironically, I also have auditory processing issues, which means that I find it hard to register what someone is saying at a phoenetic level. I have trouble telling apart different vowels, consonants, and syllables, even when my concentration game is 10/10. The other day, my roommate told me that we didn’t need to get our keys to leave our room, because she was going to get a chair to “prop the door open,” but I thought I heard her joking about wanting to “chop the door open.” I went in my bedroom and came back with my lanyard, just to see my roommate waiting in the hallway… behind a chair placed between our door. Laughter ensued.

It’s funny that I have a speech impediment that makes me sound mumbly to others and a neurological hearing problem that makes other people sound mumbly to me.

In a way, it’s very helpful, because it gives me an idea of how I might sound to my friends, and vice versa. I think I’m going to say, “We’re even now,” the next time someone mishears me because of my speech impediment; I don’t know why this isn’t a running joke with all my friends yet. You have to have a sense of humor to deal with stuff like this.

I’ve had people ask me what it was like growing up with my disability.

To be completely honest, I don’t always like talking about the way I was when I was a little kid. I don’t want people to use childhood habits that I barely remember as some sort of a benchmark to measure the present, adult me against. I’ve even considered keeping my past completely private for that reason, but privacy in general is kind of a lost concept for me. The allure of poignant, evocative prose (and a best-selling memoir, someday? Literary agents, HMU) have totally desecrated any sense of reservation my parents (and those people that visited middle school to give lectures about being smart online) had tried to instill in me.

Anyway, I had a completely different set of challenges as a child than I do now. I’ve changed beyond recognition, but I’m afraid that most people won’t understand.

Many people think that the challenges one has as a child are indicative of the challenges they will have as an adult. This fixed belief doesn’t also come from outside the disability community, but also from within the disability community. Many disabled adults, especially those who grew up without proper supports, insist that all neurodivergent traits are immutable, and that anyone who claims to have grew out of them has been trained like a circus animal to perform socially normative behaviors. I know that this is such a prevalent narrative in autistic circles, but as with many other things, I can’t relate.

As a child, I was a textbook case of autism. I spent a lot of my time hyperfixating on concrete details of my life, like whether my dog’s leashes were the similar enough shade of pink. I was an advanced reader, but my rigid thinking set back my social and emotional maturation by years. One time in fifth grade, I anxiously went to my therapist, struggling to mentally process the sight of my new BFF sporting glitter eyeshadow earlier that week. “It makes me feel more confident,” she explained. For the next few days, I ping-ponged between two extreme emotional states: intense jealousy for the girl whose was allowed to wear makeup to school, and aching compassion for what I saw as a misguided attempt to cope with her insecurities. I needed numerous therapy sessions to be coaxed out of my simplistic way of thinking and catch up on emotional literacy that my peers had mastered years ago.

Today, I would describe myself as a hyper-abstract, big-picture thinker whose favorite word is nuance (I still dislike glitter eyeshadow, but that’s because I think matte looks better, at least on my face). Even though these qualities weren’t obvious until I was a teenager, I can’t help but feel as though they’ve always been a part of me. Like I said, so many things are hard for me because I see things at such a macro level and can’t just focus on one thing at a time. These things are foundational to my strengths and weaknesses, and, contrary to what some may think, are not learned behavior that I could tear off like a charade.

People say that I march to the beat of my own drum, and I think that statement captures it all, whether we’re talking about my current life or my developmental trajectory.

After years of research and self-reflection, I arrived to the understanding that much of the idiosyncrasies I exhibited as a young child had more to do with a temporary developmental delay, and less to do with how my brain was meant to work by default. I’ve heard some neurodivergent people describe themselves as “consistently inconsistent,” and I love that! While I’ve always been different in some capacity, the specifics ways that I am different have changed over the years. Another aspect of my life that I notice inconsistency in is the way I apply my abstract thinking skills (and according to a recent neurological assessment, an IQ of 110).

For example, I have difficulty deciphering plot of TV shows, movies, novels. When I was in high school, I’ve gotten so many points off assignments because I completely misinterpreted the books and the documentaries I had to analyze, and I still struggle to follow along with most shows, movies, and novels — even with the captions turned on, IMDB opened on my phone, and notes being taken on my laptop.

And yet, in most real-life situations, I’m good at reading between the lines. In fact, I think I might have an overactive inference, the same way many people say they have an overactive imagination. When I took Journalism 101 on my first semester at TCNJ, I made the same mistake many rookie journalists made: editorializing. At first, I was physically incapable of sticking to the facts. I filled in the blanks with my own assumptions, whether it was about a township’s history or an interviewee’s emotional state. I didn’t realize that I was doing it, until my professor pointed it out.

I’m obviously pursuing a college degree and enjoy learning about big concepts like epistemology and existentialism, but I struggle with basic mathematical reasoning. When I was in middle school, I got by with memorizing formulas, but once I entered high school, the complexity of the learning materials exceeded my (already low) memorization skills. I couldn't solve these equations without a teacher sitting by my side, reminding me what to do every step along the way, because I didn’t understand why; all those “rules” sounded like a series of unrelated, false statements, as if someone said the sky is yellow because the grass is red but the floor is soft because it’s made of glass. (no, that wasn’t supposed to make sense). Now that I no longer have to take math classes, my reasoning difficulty rears its head as difficulty understanding personal finances and a total inability to play card games other than Joker.

I’ve at times felt like I had to downplay parts of my experience and my history because they don’t neatly fit into a digestible narrative (or a counter-narrative, really). Due to the unusual nature of my disability, I feel like an outcast, even within many disabled communities. To tell my story is to swim against the current of common knowledge and conventional wisdom. Even the space that I carved out here feels precarious, like the smallest of a trickle could wash it all away.

I try to be very clear, eschewing the sort of ambiguity that would allow readers to project their own understanding of disability — even if that understanding is not wrong in itself.

And surely, it would be wise to leave out information that could further confuse or distract the listener? But to do so is to minimize important parts of who I am. Like the empathy I developed from being a little kid who struggled to make sense of the world. Or the pangs of loneliness I get because I’m unable to consume a large portion of popular media. Or the sense of vulnerability I feel when I enlist my family and friends to make decisions for me, because I cannot wrap my head around certain concepts. These are the things that make me who I am.

A big part of thriving with a disability is self-awareness and self-knowledge. My perception of the world is a bit different from most other people’s perceptions. I became vaguely aware of this in middle school, and as I grew older, I expanded on this revelation by noting and reflecting on recurring patterns in my own life. Publishing pieces about my disability and being involved in disability advocacy has helped tremendously with this.

Having to answer others people’s questions, real or hypothetical, challenged me to clarify my own understanding.

I’m still learning new things about my brain, as I encounter new situations and learn new skills.

In recent years, I became increasingly aware that my recollection of events are less detailed than that of other people. I recognized that I wasn’t as good as retaining details than the other people I knew, because I’m more inclined towards big-picture thinking. But that alone couldn’t explain the total, black-out lapses in my memory.

Over time, I began to notice other contributing factors. For example, I wasn’t overhearing many of the conversations taking place right besides me, because my mental bandwidth was already full. Also, my slow processing speed was causing huge chunks of information to spill over my head, even when they were being directly communicated to me. I’m becoming better at anticipating my blind spots, even as I continue to trust my instincts and refuse to be gaslit.

Like they say, small things add up. I’ve become adept at identifying the compounding factors that make things easier — or harder — for me.

I use this information to live a life that is stimulating and ambitious while remaining realistic.

In order to cultivate self-awareness as a disabled person, it’s important that you give yourself the permission to find “easy” things hard. Recently, I went to a night market with Natasha, and even though I had a great time overall, I struggled quite a bit with the booths where they served food. I found it nearly impossible to keep track of what was being served and how long the line were at each booth, especially when all my brainpower was being used so I don’t bump into people, knock something over, or stand in someone’s way. For the first 10+ minutes, I walked around aimlessly, unable to decide which line to get behind. I would’ve been dawdling for God knows how long, if I didn’t recognize what my limitations were. Instead, I headed towards the nearest booth, as I explained to Natasha that I was getting disoriented. Later, I discovered that there was a map for the event posted online, so now I know to look for that before I arrive.

It has become clear to me that the difficulty I face doesn’t exist in a vacuum. Everything is interconnected. Not only can my various limitations compound, alongside a lack of accommodations, to make certain situations harder than others, they are woven into my unique brain wiring, intertwined with its strengths. It might be tempting to dismiss adages like “I think differently” “My brain works/is wired differently” as meaningless fluff, as just another feel-good psychobabble intended to circumvent, but to me, the language of difference feels pretty faithful to my lived reality, even if it is not perfect.

It leaves room for mixed feelings, all those shades of grey, and the messiness of it all.

I’ll leave you with what I wrote last year:

Sometimes I wonder how different my life would be if I woke up tomorrow and was no longer disabled. It seems, at first glance, that my disability is composed of additions and subtractions: I do this thing that other people don’t do, and I don’t dothis thing that other people do. But I’m sure that the equation is much more complicated. My world has always been filtered through my atypical neural pathways. I have a mind that un-methodically hops from one thought to another, devotes its time differently than most, and has its own rules of engagement. My mind came without an instruction manual, but it is mine, and the only one I’ve got. Now and again, I am reminded of its constraints; the rest of the time, it melds into my POV, like my left-handedness and the fact that I wear glasses. Being disabled is hard, but it’s given me an interesting perspective in life.

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No I don’t just write about disability. Get to know me: byasakamae.com

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Asaka Mae

Asaka Mae

No I don’t just write about disability. Get to know me: byasakamae.com

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