Tomorrow Is Too Long to Wait for Inclusion

The Pitfalls of Passing and Not Passing

a watercolor painting of a scene from the activision video game of pitfall. a person with a labcoat is swinging over a pond filled with crocodiles with a rainbow trail behind them.

By Kit Mead

I have never learned to pass—not fully. Sometimes I do look like a person you could see in the street or in the grocery store and never peg as neurologically different. But I never leave the house without my headphones to protect myself from the sensory assaults of the outside world. I tend to look harried and panicked in public with occasional handflaps. Sometimes noises escape. My stiff gait and mumbled words at the checkout counter give me away if it’s not apparent by now. I am autistic, with a few other comorbid diagnoses like anxiety. It renders the world too bright, too loud, too social at times. Other times, I am childlike and impish, scampering about with a few undignified squeaks. This is usually when I am comfortable with my situation.

I still pass better than many people. You might not guess I’m autistic, after all.

Both passing and not passing have their pitfalls. Despite social skills training, I never learned how to interpret conversations in a way that doesn’t make them slightly awkward unless you’re used to me. I simply don’t understand how to track the pauses in conversations and the times when I should speak and the flow. For other people, social skills training is more “effective,” depending on the goal. They pass, whether their training was with trained professionals or their parents.

Passing means you value us as slightly human:

As in music, I learned my part in life. I look you in the eye and smile. I have been taught to move through the world without making you uncomfortable. I modulate, adjust, check you for uneasiness, measure myself against memorized parameters every waking moment so you can pass me on the sidewalk without seeing disability.

You value me because I am useful in some ways now. You assume I will be more so when I finish my education. I run in your circles sans any illusion of membership.” –Larkin Taylor-Parker [source]

In the same piece, the author notes that it also takes “more practice to fake facial expressions than make a forty-pound horn play sixteenth notes. Tuba can be self-taught.” Learning to pass is often forced upon us: you shove us in a box, reshape us to take on the form of the box and then you praise us for seeming almost human. Personally, I do not experience this burnout and fatigue associated with passing. This is because I make little effort to do so.

But not passing also has its problems. I am not as visibly disabled as some of my peers. For me, the consequences are usually just stares and whispers from unknowing observers. In extreme cases, I had a shutdown on my college campus and the campus police were called – an unnecessary step. In my experience, it did not escalate further. This is not the case for many of my autistic peers, whose “infractions” – often no more than being visibly disabled and people of color – resulted in police using excessive force and/or hauling them off to jail. Not infrequently, my peers are written off entirely as not worthy of dignity, respect, human rights, the right to choose where they want to live, and education – and this is not an exhaustive list.

I am sometimes, but not always, human to you. I live in my own apartment, and I’m even adopting a cat, but I’m going to have to hire someone to come over once a month to help me keep my rented room clean and maybe help me figure out how to do dishes. I completed my college education, but it came with a price tag of more than money. I got thrown out of the dorms my first year. I struggled to graduate while my friends graduated at least cum laude, often resulting in feeling inferior and less worthy of the education and the school I was at. I went into burnout for parts of it, running on autopilot. My mental health tanked frequently.  I now work forty hours a week at a nonprofit that fights to protect the humanity of autistic individuals. Part of my success has been finding a job that lets me not pass as long as I do what I need to do. I have coworkers willing to prompt me out of my chair when I forget how to move.

And I might have a shutdown out in public that resembles a medical emergency and leaves me unable to speak to communicate my needs. Thanks to executive dysfunction, I recently lost my cell phone, but the new one coming in the mail will have Emergency Chat installed.

Whether or not someone passes seems to be the mark of how humanely our society treats us. When we pass, we are seen as human enough to run on the fringes of your circles. You permit us to do so. You expect gratitude. When we pass only sometimes, we do not run in your circles, but occasionally we are allowed to make appearances and seem human. We might end up mainstreamed in schools, or we might not. It’s iffy and situational and the decision is always in your hands. When we do not pass, ever, society  relegates us to the basement in segregated programs at school and in group homes. You  mourn the loss of someone you could teach properly. You lose any semblance of respect for them.

And this is why I am involved with neurodiversity… because our humanity does not have social skills requirements. It does not have speaking requirements. It does not have passing requirements. We are human. See us as such, and quit inventing societal games to keep us in line.

Photo Credit: Doctor Popular/Flickr

Kit Mead is an autistic disability rights activist originally from Atlanta, GA. They are now based out of Washington, DC, where they are the Technical Assistance Coordinator for the Autistic Self Advocacy Network. In addition to their work with ASAN, Kit has been published in QDA: A Queer Disability Anthology and maintains an advocacy blog. When not doing advocacy, Kit hangs out with their cat and writes poetry.

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