This Is What I Want People To Understand About My Disability
I’m an adult living with a developmental disability. My brain doesn’t store, organize, and retrieve information the same way other people’s brains do. I was born this way. Essentially, I take longer to process information — a psychological evaluation showed that my processing speed is in the lower 4th percentile — and I’m not so great at planning, organizing, or exercising self-control.
Being disabled has taught me to speak up, ask for what I need, and to never suffer in silence. My disability is a big part of my life, and when someone miscalculates the scope and nature of my disability, they’re also miscalculating how I think, feel, and see the world. Sadly, this has cost me friendships and opportunities. I haven’t always had the luxury of letting people think what they want to think. I don’t know where I’d be now if I didn’t relentlessly self-advocate.
Self-advocacy is so important. A recurring theme discussed amongst the disability community is the contrast between appearance and reality. Someone who cancels plans last minute might not be inconsiderate; they might be experiencing an unforeseen flare-up. Someone who leaves early might not be anti-social; they might be struggling with sensory overload. Someone who is always tired might not be unmotivated; they might be dealing with physical or emotional pain we don’t know about. Appearances can be deceiving.
Now, when many people see me, they think they’ve got it all figured out. My disability manifests outwardly as idiosyncratic behavior. It’s quite obvious that there is something “off” with me. When I finally get to explain why I’m the way I am, I’m often met with that astonished look: oh, wow — I was totally wrong. It’s funny how the most noticeable parts of my disability are also the most misunderstood parts.
If you were to have a face-to-face conversation with me, you’re bound to notice, sooner or later, that I carry myself differently. My facial expressions are less pronounced, and much of the time, I’m either wearing a big grin or staring blankly. My words can be muffled and at times monotone. I occasionally unfocus my gaze and blink rapidly. A common misconception is that I have a hard time reading social cues. I move in a labored way, and if you’re not used to me, you may find it hard to read my body language. But that doesn’t mean that I can’t read other people’s body language. What you’re seeing is just a minor glitch in my nervous system: the signals exchanged by my mind and my body get lost in transmission.
As you spend more time with me, you’ll probably notice other communication difficulties. I’m not great at saying the “right” things. Contextualizing is easy — what other people are feeling, what their motives are, and what they need to hear. It’s the logistical stuff that trips me up. Small talk is difficult, because I take so long to think of a topic I can bring up. I habitually come across as tactless, because I can never pull off the right wording and timing — all the steps get mixed up in my brain. In my irresolution, I often speak impulsively. I catch myself going on tangents and making unintended insinuations. Truthfully, my brain doesn’t register these remarks as awkward until I begin saying them out loud, and it’d take me hours before I could flesh out what I would’ve wanted to say instead.
Some days, I navigate social situations like a bull in a china shop, setting off a domino effect of awkward silences. I’d try to diffuse the tension, but I always feel obnoxiously corny and probably a bit insensitive, like I’m some balding, suburban youth pastor trying to appeal to a crowd of disaffected teenagers.
People tell me that I’m thoughtful because I’m aware of the way my disability affects my interaction with the world. At the drop of a hat, I can list all the social norms I break and all the social cues I do not reciprocate. Honestly, I don’t have to think about it. It comes naturally. I have been asked if I view the social world like a perpetual foreigner, astonishment in their eyes and a notebook in their hand, but that couldn’t be further from the truth. Though I don’t always act the same way as the people around me, I can easily follow along with what they’re saying or doing. I’ve spoken to friends who do not experience social difficulties, and we all interpret social situations very similarly. Assuming that I don’t understand simply because I struggle to express myself is no different than assuming that someone can’t read just because their handwriting is crappy.
Though I tend to spend more time talking about the social effects of my disability, my disability also affects me outside of social settings. Adaptive behaviors that most take for granted don’t come easily to me. Everyday, mundane obligations like cleaning my room and completing paperwork often take more effort for me, and I’m susceptible to procrastination and addictive behavior. Additionally, I experience lapses in attention and am easily disoriented, sometimes to the point where I don’t realize that I’m standing in someone’s way or walking too close to someone. My intellectual abilities are distributed unevenly, and it’s a lot more complicated than, say, being good at writing and bad at math (though I also definitely fit that description). While I love to learn about different viewpoints and explore big, difficult questions, I struggle to grasp “basic” concepts, including how to play card games, as my rigid thinking makes it nearly impossible to learn; while I can piece together real-life events in a heartbeat, I’m utterly confused by many movies, even when I’m taking notes the whole time.
I can’t drive or travel on my own, and I likely will not be successful in a super traditional career path, whether that’s working at a 9-to-5 office job or serving customers. I’m not nearly as independent as my non-disabled friends, but I’m no less of an adult.
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 do this 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.
I don’t know who I’d be without my disability because it’s an unsolvable equation. I never said math was my thing. All I know is that these are the cards I’ve been dealt, and I’m going to finesse the hell out of it. I take advantage of tools, including assistive technology and ADA accommodations, all of which I’m grateful to have access to. Fighting my limitations only gives it more power to hold me back. I work with, rather than against, my disability.
I leverage my knack for writing to thrive with my disability. Sharing my story has opened many doors for me, socially and professionally. My life is exhilarating and I’m so, so thankful. Currently, I’m working on my degree in Journalism and Professional Writing. Not bad, don’t you think? I don’t know what the future holds, but I have a good feeling. Sometimes it freaks me out that so much depends on my ability to write, but years of therapy have equipped me with emotional tenacity. I’ve overcome adversaries, including trauma and mental illness, all while being disabled. I think I’m one badass woman.
Limitations, no matter how profound, do not negate ability. Earlier, I used the analogy of handwriting to describe my social difficulties: in the same way a person’s handwriting says nothing about their ability to read, the way I behave around other people has no bearing on my ability to understand them. I could also take this analogy one step further: what if a person couldn’t read? Then what? Being unable to read isn’t synonymous with being unable to think, and there are many ways you might be able to reach this person: you could talk to them, use sign language, or draw with them.
Everyone should be given a chance, including those with highly stigmatized disabilities. I know other disabled people who struggle to grasp mainstream social rules, and though that isn’t my struggle, I know that they are empathetic and insightful, in their own, radical ways. If being a part of the disability community has taught me one thing, it’s that there’s more than one way to approach things. Human adaptability is a remarkable thing, and abilities come in all shapes and sizes. Removing the stigma surrounding disability is imperative. I’m grateful for those who have come before me, and I’m determined to continue advocating.
By now, you’re probably wondering: Asaka, what’s your disability?
My disability is known as autism and ADHD, though you can also think of it as a generalized learning disability. I say it that way, instead of “my disability is autism and ADHD” because I find it nearly impossible to define my disability through clinical metrics.
My whole life, I have contended with this burning question: what’s your disability? Ever since I started publicly speaking out about my disability, I’ve tried to negotiate with the societal expectation to label myself, but I’m tired of playing by someone else’s rules.
My reluctance to label myself is not a matter of euphemism — in fact, quite the opposite. There is nothing shameful about being diagnosed with autism and ADHD, but I don’t think these terminologies are as precise as we’ve been led to believe. Although I technically meet the clinical criteria of autism, there are a number of caveats, and my autism and my ADHD are so closely intertwined that I can’t parse apart the two. The whole thing is a semantic nightmare. When I started describing my disability in my own words, saying exactly what I meant rather than using shorthands like my autism and my ADHD, much of the confusion went away. Until I get to that, I think an open-ended statement, e.g. “I have a disability,” is good enough.
Just as clinical parameters, like diagnosis and severity, can’t contain the complexities of living with a disability, they don’t dictate how a person feels towards their disability. Every individual has a unique relationship with their disability, which may be reflected through language. Many identify as disabled, while some identify as a person with a disability. Personally, I’m not offended by either, though I’d say that disability isn’t what I have, or what I am, but what I experience. Nonetheless, I’m comfortable with whatever phrasing that flows with the rest of the sentence. Furthermore, some people think of their disabilities as illness or disorders, while others interpret them as differences. I resonate more with the latter, though my feelings may change.
What’s it like being disabled? It’s complicated. I want the world to remember that there’s more than meets the eye. I don’t expect any person on this planet to read my mind or know every circumstance surrounding my life. I’m not interested in perpetuating our stifling fixation with being correct. Instead, I hope that we can all stay curious, daring to imagine possibilities outside of cliches and generalizations. Documentaries, books, and social media posts can be informative, but rarely do they prepare us for real-life encounters and the plural, nuanced truths that make up the disabled experience. After all, educated guesses are just that — guesses. May we all keep on learning.