Even people who didn’t get deathly ill. Who aren’t still struggling to recover. Who didn’t lose a loved one—or more than one. Who didn’t bear the brunt of it because of their race and class. Who didn’t lose a job because of it.
Those who didn’t miss out on senior year. Or the play. Or the prom, quinceanera, or bat mitzvah. Those who didn’t sit alone for months. Didn’t shutter their family’s business. Didn’t die of a curable disease because the hospital was full.
Even those who had enough to eat and someone to talk to. Who did not lose their homes. Those whose animals survived.
Even the lucky ones who had internet access and books and music. And who, when a vaccine came along, had access to it, and were not dissuaded by madness.
Even the most privileged among us are living with trauma.
Not one of us has escaped. Not one is unchanged.
Take a moment to be gentle with yourself, and with all whom you encounter. Even the monsters are crying inside.
I DREAMED I’d boarded a ship that was slowly making its way to an exotic vacation locale, somewhere on the other side of the world. I’d bought a giant new steamer trunk for the voyage. I thought I’d have a cabin to myself, but, below decks, the ship was like a passenger train, with row upon row of seats. Voyagers had to sleep sitting up in these seats, and we had to hunt for a vacant seat. At first, I had a row of seats to myself, but I realized that the remaining seats would soon be filled, and perhaps by a group of noisy, aggressive people who knew each other. I’d be the odd one out. So I moved into an occupied row, next to a Japanese passenger who was already half-asleep, his hat pulled halfway down over his eyes, and was traveling by himself, like me. My arrival woke him, slightly, and he nodded to acknowledge me, then closed his eyes again. I realized, as I settled in beside him, each of us slouching away from the other for privacy, that I did not have my trunk with me, and did not know where it was being held. I couldn’t even be sure that it had made it onto the ship.
The ship docked at an American city for a quick break. It was a quaint old town, with buildings that seemed to date back hundreds of years, including a picturesque ruin or two. The dock was filled with similarly set-up cruise ships; this was obviously a major rest stop for the seaborne travel industry. The dock was infinite, an endless perspective of identical cruise ships, each disgorging thousands of passengers who merged into an oncoming throng. So many were coming that they raised the dust before them. I wondered how the quaint old town could possibly accommodate so many travelers.
I had wandered into the city for many blocks when I realized I didn’t have my wallet with me—it was packed in the trunk, presumably back on the ship. I came to this sudden understanding while trying to complete a trivial purchase at the register of a small store.
“I came on a ship, my wallet’s on board, perhaps we could call the ship and have them read you my credit card number?” I suggested to the frowning cashier.
I didn’t know.
“Where’s she headed?”
I suddenly didn’t know that, either.
“Look, I’m on a three-week cruise,” I said. “I don’t remember where I’m going. I don’t know why my family’s not with me.”
The embarrassing admission did little to improve my standing with the cashier.
I had given up and was trudging back to the ship when I realized I did not know where it was docked. I asked townspeople where the dock was located, but they frowned at me as if I were mentally ill or horribly disfigured, and scurried quickly away.
So I wandered, through blocks that resembled Dresden after the Allied bombardment, with no adults to be seen—only underfed, half-naked children, who darted past like hurrying ghosts, presumably scouring the bombed-out buildings for scraps of food or dry places to shelter.
After hours of walking at random, I began to pass buildings that looked vaguely familiar, and thought that I must be approaching the dock again. I could hear distant gulls, their cries half-muted and oddly modulated as they echoed off the broken buildings of the old city.
If I came out upon the dock, would I remember which ship I’d been traveling on?
What was my name? Could my luggage identify me if I knew where the crew had stowed it? Could I describe my luggage to help them search for it? No, it was new and I was unfamiliar with its design. I couldn’t even remember what I’d packed, except for a faint impression that I’d stowed the contents in many small boxes inside the trunk.
But to even reach that impasse of being unable to describe my luggage, I’d have to first identify my ship, and they all looked the same. My ship might already have left. And I didn’t even know its destination.
Apropos of nothing in particular, I present my all-time listening (first 5.25 rows) and more recent listening:
Because I’m weird that way: Sometimes I’ll listen extensively to a particular artist from my collection whom I might not have played in a while, simply to bump them higher in the mosaic or reposition them for a more pleasing composition.
If Spotify exposes you to new music, Last.fm helps remind you of great music in your existing collection that may have slipped your mind. (Not an advertisement. I use last.fm and get great pleasure from how it helps me discover and fuss with my music, as I once spent hours in the old days stacking and rearranging my LPs and tapes.)
And that’s how I stay out of the pool halls.
Public Service P.S: If you do decide to try last.fm, please, by all means, pay the small monthly subscription fee if you can. Doing so supports the under-resourced team that keeps the service going. It also removes the ads, making the site usable (the ads are a nightmare), and gives you the option to view your music as a visual grid, like those shown in my screenshots. The grid-view makes the site. It gives you, not just a visual record collection, but a visual artist collection, if you’ll allow the conceit. I love it.
Snow White pushed a stack of ceramic espresso dishes off of the kitchen counter this morning, to see how many of them would smash into a thousand tiny pieces. The answer was most of them.
I couldn’t find my broom, so I had to clean the scattered ceramic chips by stooping over a dustpan. Which made me wheeze and gasp for breath.
So the whole thing turned out great, because I’ll be able to tell my doctor, when I see him on Tuesday for my first annual physical in two years, that my COVID long-haul symptoms have not improved one bit. Which I might otherwise have lied to myself about.
Our static tools and linear workflows aren’t the right fit for the flexible, diverse reality of today’s Web. Making prototyping a central element of your workflows will radically change how you approach problem solution and save you a lot of headaches – and money. But most importantly, you will be creating the right products and features in a way that resonates with the true nature of the Web. A discourse on processes, flexibility, the Web as a material, and how we build things.
As a child, I loved summer—no school! I could stay indoors all day and read! But summer camp, which I dreaded, ended my romance with that season. Even as an adult, no longer forced “for my own good” to do things I hate, the humid misery of August in New York is a hell I wouldn’t wish on anyone. Where were we? New York has two glorious seasons: Spring and Fall. They last only a few days each, it feels like, but that bitter brevity contributes to their sweetness. Spring has a slight edge over Fall in my heart, especially after the twelve months we’ve had.
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Got vaccinated against COVID-19 today. Stood in line for just over 90 minutes outside a Lower East Side high school that was being used as an immunization pod. There was an old couple in front of me in line; the man initially thought I was standing too closely behind him and demanded I move back. Fair enough. I spent the remaining 90 minutes keeping my distance from the couple.
After a while I began to worry about the old man. His wife, no youngster herself, said he had just had heart surgery. She wasn’t getting immunized—perhaps she didn’t yet qualify. Mainly she was there to hold his hand and keep him from falling down.
Over the 90-odd minutes, as unobtrusively as possible, I set myself to guarding the old man in case he needed any help his wife couldn’t provide. At the last corner before the high school entrance, there was a little plastic seat. The old man’s old wife asked him to sit and rest a while, and I told them I’d watch their spot in line.
It had rained, but the sun was beginning to come out, and the temperature was warm for January. I did little stretches in place, moved forward occasionally (when the line moved), and let my mind wander.
I had my phone on me but I didn’t look at it for fear of draining the battery—there was an access code on the phone that I needed to present to a gatekeeper to get my shot, and I couldn’t do that if the phone died. Also I kind of dug the boredom. At home, I can look at screens for hours. But outdoors, standing in line, anxious about losing my place or not realizing the line had moved or losing my ID (I have an anxiety disorder and worry about many small, stupid things), I prefered to just be bored for 90 minutes. It was rather restful.
There were many workers helping move the line along, mostly young folks in their late teens and early 20s. Their work day had started at 7:00 AM and would continue until 8:00 PM. Thirteen hours of standing in place. Thirteen hours of answering the same questions. I made a point of learning their names and chatting with any of them who were willing to talk. Catastrophe may bring out the worst in some people, but it was bringing out the best in them.
One of the helpers, an MTA worker, told me he looked forward to standing 13 hours a day after weeks of sitting around at his regular job with nothing to do.
Eventually I made it into the building itself, and then I was getting a jab. Didn’t hurt. Uneventful. I thanked the doctor for his gentleness.
Afterwards I sat in a makeshift waiting room for 15 minutes to be sure I didn’t have an adverse reaction. Then I left, thanking cops, guards, doctors and volunteers as I did so.
Walked around the Lower East Side a few minutes longer and then caught a Lyft home.
Later today I may have soreness or nausea or a headache that could last a couple of days. No big deal. I have to wait 28 days before getting my follow-up dose, and it has to be the same vaccine I got today—the Moderna vaccine, not the Pfizer. (The Pfizer has a waiting period of 21 days.)
When I got home, my daughter was awake and cuddling our big white cat. I went online to register for my second dose. There are no available locations in Manhattan in that time period, so I chose one in Brooklyn, and I’ll go there in February.
The first dose makes you 50% immune, they had told me. The second dose makes you 75% immune. Nothing makes you 100% immune. We will need to keep masking and maintaining social distancing for a long time to come.
“Ava, you need to understand that there’s something wrong with you, actually, quite a few things.” I listened closely, sitting in the large orange chair, making stick figures with my nails on the fabric. “You have this disease that’s very common with people your age who’ve gone through some of the things you have… it’s called autism, and together we can cure it with time.”
At age six, I knew what autism was, or at least I had a vague idea based on the movies I’d seen, and the bullying I’d observed given to my fellow child-outcasts. I didn’t really understand what the big deal about it was; I mean, my grandpas were both autistic and they were fine… kind of, along with my uncle, and some cousins—I didn’t see where Doctor A. was going with this speech.
“Ava, I have spoken to some of my colleagues, and we are going to give you the diagnosis of ‘unspecified mood disorder.’ No one can know that you’re autistic… there’s still hope for you.”
I panted, she continued:
“A lot of the kids out there in the waiting rooms outside aren’t gonna be able to overcome this, and I believe that you can. With the right treatment we can cure you of your autism… but you can’t tell anyone that you have it—not your mommy, or your daddy, or your friends!”
“Why?” I asked, feeling a ball of shame start to build at the bottom of my stomach.
“Because Ava, if they know, they’ll see you as different, and it will be harder for you to overcome, I promise there is hope for you Ava. There might not be hope for your dyslexia, or A.D.H.D., but I believe that if you stay with me, we will get you through this together.”
Ever since pre-k, I’d known I was different, but for a good couple of years, I didn’t have the shame.
Looking back now, I think it’s pretty obvious that I was not a neurotypical kid: at age four, I refused to leave the house without rubber gloves on my feet because I liked the smoothness on my soles. At age six, I couldn’t talk to kids my own age about anything besides the Wizard of Oz books, explaining my theories about their cultural symbolism, and how L. Frank Baum was an innovator and genius, not just because of his vivid imagination, but because he proclaimed trans rights (for the time), and pretty much invented the blueprint for the home landline—my teachers were not pleased.
What really brings light to my Asperger’s, though, is that my first crush, at age nine, was on Steve Buscemi’s character in Ghost World—I had never related more to a character (except for the protagonist of the same film, played by Jewish goddess, Thora Birch), and I liked seeing someone like me who only talked about his hyperfixations, and found it hard to talk to people. Sure, Terry Zwigoff didn’t mean to portray his character in a romantic light, but even to this day, I find Seymour and Steve Buscemi to be the epitome of male sex appeal.
I first started seeing Doctor A. when my parents separated, after I left a handprint of excrement on the walls of both of my apartments (thankfully, I have no recollection of creating that art). I had a hard time making friends or abiding by social norms, and when there were tiles on the floor, I would count every one of them. When I first moved into my (then) new apartment, I counted each log strip on the ground, and cried when the total wasn’t an even number, or perfectly aligned across the floor.
Doctor A. refused to give me medication for these issues, or for the depression and anxiety that I had at that early age, saying “It would impede [my] progress for these curable diseases.”
I am now sixteen years old, and I know autism isn’t a disease, it’s a neurological condition that people have from birth. I remind myself of that every day, but sometimes, facts can’t curb the shame.
When I started public school I was bullied very badly because I didn’t talk like a normal kid. I would only speak about things that I was interested in, couldn’t make regular eye contact (an issue I still have), and didn’t abide by any of the child-edikit that most kids learn by copying their peers. Kids beat me up in kindergarten because I was so “weird,” and my teachers chalked up my inability to pay attention in class and my unique behavior to my parents’ separation, which is honestly one of the least traumatic traumas of my childhood.
My parents eventually transferred me to another public school because I wasn’t accepted into my neighborhood school’s I.C.T. program, and my bullying was pretty unbearable.
When I transferred, for the first time in my life I was popular, but as my peers got to know me better, I quickly became isolated again. I eventually repeated the second grade because I hadn’t been able to learn anything in my previous school due to well… all that dogshit, of course; and being left back didn’t help me adjust socially at all. On top of the Asperger’s and being the new kid, I was now not simply the weird girl, I was also the dumb girl. Kids bullied me, calling me a ret*rd, and telling me to kill myself. This period of having no friends (apart from fourth grade when I actually had kind and qualified teachers) lasted all of elementary school and into seventh grade.
In fifth grade I forgot how to smile… when I looked at photos of myself, I freaked out because I was scared that I wasn’t smiling properly. Every day I would spend thirty minutes in front of a mirror practicing smiling, moving my mouth with my fingers, using my school protractor to measure the angles of my smile. I felt like a freak, and sometimes, when I look at photos of myself, or actors with great smiles, I forget how to smile once more. Every couple weeks I go to my bathroom mirror and practice smiling. Sometimes it’s for five minutes, sometimes two hours.
Socialization comes easily to other people. I don’t know how to make proper eye contact still: people always tell me I either never make eye contact, or stare at people so aggressively, it creeps them out. I also overshare to everyone about my political opinions and my sex life, because I still don’t understand social norms in America.
The other day I had an argument with my parents about not needing to wear pants when I go outside, underneath my hoody: “They won’t know what I’m wearing under this giant thing anyway… Why does it matter?” I still don’t know, and sometimes people think I’m faking not knowing these things to get attention. Truth is, I just don’t understand these unwritten social rules.
I don’t understand why I can’t talk about sex, why I should be ashamed of one of the most natural things in the world. I don’t understand common dress codes, I think they’re sexist, bullshit, and meaningless—and it’s not simply that I’m a feminist, it’s also that my Asperger’s impairs me from understanding these things that everyone else seems to have no trouble with.
Autism isn’t just social and mental, it is also physical, coming in the form of sensory processing disorders. If light is too bright, I can start crying; when people (including myself) chew too loudly, it feels like I’m being stabbed in the ear; and when I freak out or get really scared, my body shuts down, I can’t move, and I especially cannot say anything. I am ashamed because whenever strangers see these behaviors I am criticized. Even people who know and love me criticize me about these things. I feel like no one understands besides other people with these conditions.
That’s the thing, the shame is bullshit, the hatred I have over my Asperger’s is bullshit, wishing I could get rid of my autism is bullshit. The smartest and most talented people in the world are almost always autistic, and always atypical: Einstein, Stephen Hawking, Neil DeGrasse Tyson—but not just scientific geniuses, artists like David Byrne, Bob Dylan, Picasso, Max Ernst, Leonardo Da Vinci, and famous writers like Ernest Hemingway and Emily Dickinson.
You may have noticed that only one of the people on that list is a woman. That isn’t because men are more likely to be autistic, it’s that men are more likely to be diagnosed with autism, as women are taught to suppress their feelings and individuality.
And fuck it, the pros of my Asperger’s far outweigh the social cons, at least at this point in my life. My creativity and vivid imagination, my natural leadership, my ability to work alone and feel confident in my own choices, my unique empathy toward others and compassion for animals, the fact that when I become interested in something I’m practically a walking encyclopedia for that topic—my sense of humor, and the way that I always say what’s on my mind, a trait that women are told not to have, I have because of how my autism affects my executive functioning and my inability to abide by social norms.
I’m trying to stop freezing up when people ask me why I’m so strange, or if there is something wrong with me. I’m trying to not let people’s ableist comments get to my head, because I know deep down that in ten years these people won’t be able to produce an original idea to save their lives.
I have one thing to say at the end of this: fuck off, ableist assholes; fuck off, Doctor A.—I’m not ashamed of who I am; and fuck off, shame—you pit of piss at the bottom of my stomach, you don’t control me! The problem is society’s attitude towards people with neurological differences—not the differences, themselves. After all, in ten years, whatever cool ass shit I’ll be up to, the same kids who bullied me as a child are gonna wish they had my zesty Asperger’s funk.
Dear mom and dad, I know things are harder for me than the average teen, but I’m gonna be okay, because my brain is awesome, and my tits are huge. And to any other atypical person reading this, young or old, from mild A.D.H.D. to Rain Man levels of autistic spice, know that you have a powerful brain and are one of a kind, and these neurotypicals are really just jealous that we have all the hot geniuses and good music.