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.
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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.
For years, for the sake of some hack standup comic’s guaranteed cheap chuckle, the hallowed untruths have recirculated: Yoko broke up the Beatles. (She didn’t.) Al Gore claimed to have invented the internet. (He didn’t.) Some third thing. (It wasn’t.)
And our acceptance of these lies begat an easy swallowing of bigger lies, amid a deepening skepticism about the very notion of truth. After smiling faintly at the eleventh joke about Yoko, many among us came to believe it was based on a truth. The more who believed, the more who thought surely it must be true.
Knowing that previous human beings believed all kinds of old bullshit doesn’t keep us from swallowing new bullshit and asking for seconds. The earth is flat. Jews drink the blood of Christian children. Our crops failed because that woman who rebuffed our advances copulated with Satan. We would have won the war if only our leaders hadn’t sold us out and stabbed us in the back.
For about a week, now, my bedroom floor has been torn up due to under-floor flooding created by a malfunctioning window air conditioning unit.
The A/C unit began leaking during the summer months when I lay in bed with COVID-19, and, in my sickness, I initially did not notice the leakage. When I did notice, I was too sick to do anything about it, other than turn off the air conditioner. Summer in New York did not make that sustainable.
Months passed, I began to recover, and repair people began to work in people’s homes again as New York flattened the curve and began carefully easing restrictions. Six weeks ago, I hired an authorized air conditioning repairman to make a house call and check the air conditioning units. (There are three window units in the apartment; one leaked and all three were radically underperforming.)
I thought the fancy repairman had stopped my bedroom unit from leaking, and apparently so did he. On that basis, I authorized a floor repairman to rip up my bedroom floor and replace all the warped floorboards. It took me three weeks to get the floor guy to come here.
He came, he pulled up some of the floorboards, and he immediately stopped working. It was impossible to continue the repairs, he explained, because the under-floor was badly flooded. He asked why I had waited to so long to get him in. I told him I’d been trying to get him to come for three weeks.
So, anyway, he ripped up more of the floor, then went away and told me to wait a few weeks for the under-floor to dry out.
A week passed. The water under the floorboards didn’t seem to be in any hurry to evaporate.
Then this morning I couldn’t open or close my bedroom door, because the floor area near the bedroom’s entranceway had suddenly begun to buckle. By pulling with all my might, I was able to open the door, and I will have to leave my bedroom open until my floor is fixed.
Why was the leak spreading, I wondered. And then I noticed that the air conditioning unit had begun leaking again. There was a fresh pool of water on the floor beneath the unit that hadn’t been there last night.
So I called upon Damir, a porter-slash-handyman who works in the building. He’s exceedingly courteous and warm-hearted, happy to take on odd jobs, and remarkably competent at diagnosing and repairing the many things that can go wrong in an apartment.
(Be thankful I’m only boring you with this tale of the flood, and not listing the many other home repairs that have become necessary since around the time the quarantine began.)
Damir elevatored up to my apartment and immediately found the twin causes of the bedroom air conditioner leak. First, there is filthy gunk in the guts of the unit that prevents the water from draining. Second, because of the way it was first installed, the unit is angled forward into the room instead of tipped slightly backward. As a result, all that icy, backed-up water leaks down into my apartment instead of spilling harmlessly out the window and into the alley behind the building.
Over the months I was sick, enough water had quietly leaked into the room for all that cold wetness to find a weakness in the flooring—a point of entry—where the water secretly settled like a doom in the darkness under the floor.
Damir brought up a hand truck to lug the A/C unit down to the building’s basement, where he will hose out the guts of the machine. Then he will reinstall the machine and build a shim under it to tip it backward so future leaks go out the window. It looks like he may get everything finished by tonight.
While Damir was making ready to cart the A/C unit away, he emptied my vacuum cleaner and vacuumed up the bedroom. Meanwhile, I moved all the stored items (boxes, drinks, rocking horse) out of the hall that leads to the bedrooms, so there would be room for Damir to cart the huge air conditioner away.
Damir and I were both wearing masks, of course, and in my post-COVID weakness, I found myself breathing heavily while I lugged the junk out of the hall.
Remember, several weeks ago, I paid several hundred dollars to an authorized air conditioner repairman who didn’t do any of the work Damir is doing and didn’t even notice the cause of the flooding or recognize that the flooding would continue. Damir, a building porter, would seem to be a better air conditioning repairman than the authorized air conditioning repairman was.
If the work Damir does today finally stops the A/C from leaking into the apartment, then the next step, after the under-floor dries out, will be for the floor guy to finish pulling up all the floorboards, replacing them with new ones, and buffing and enameling everything to turn those planks into a floor.
The hardwood floors are one of the most beautiful things about this apartment; I hope, some months from now, some semblance of what they used to be will be restored. Although at this point, I’d probably settle for ugly linoleum and the ability to shut and open my bedroom door.
Update: 60 minutes later…
Damir cleaned and reinstalled the bedroom A/C, mopped up a lot of the flood water on my bedroom floor, built a shim to tilt back the window unit after installing it, and checked 60 minutes later to be sure it wasn’t leaking. (It isn’t.)
He also cleaned the filters in the living room unit and Ava’s bedroom. I thought I had cleaned them but I did a poor job. Two words: cat hair. It gets stuck in all the units, causing them to malfunction. Basically, Snow White + my poor home upkeep skills + five months with COVID-19, not really paying attention to what was happening in my apartment, led to all this.