Is It Ableism? Part 3: Defining Disability

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Is It Ableism? Part 2: Obvious Definitions of Ableism

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Is It Ableism? Part 1: Revisiting the Dark Ages

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Can We Stop Alienating Each Other?

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Frustration, Anxiety, and Tension Part 2: A Witch's Brew of All Three

In my previous post, I discussed the way frustration, anxiety, and tension can mount as you try hard to better yourself, only to be dismissively told that you're not trying. But what happens when these demons overwhelm you and you end up doing something stupid and get into even more trouble than before?

One particular incident happened to me at age eighteen, on a Saturday morning in 1998 during my senior year of high school. I was taking a figure drawing class at a local university, and during that time in my life, I was dealing with a lot and my anxiety was like a raw exposed nerve.

First, I had just finished what would’ve been my final summer at Camp Negev. I had been in the C.I.T. program that summer, and it was clear that I would not be hired as a counselor the following year. Camp was the only place I’d ever felt comfortable, and it was being taken from me. This was coupled with knowing I would not be allowed to go on the gap-year Israel program affiliated with camp. Triple that with the stress of getting ready to apply to art school to study animation. It was becoming apparent from looking at the other students’ work that they were much better than me. Did I even have a chance of getting accepted to art school? That was quadrupled with the constant feeling that my parents didn’t understand me and didn’t support who I was. Even if not their intent, they often made me feel I had to change.

What many people didn’t understand was that I was thinking about these issues constantly, as if a little bug were in my ear whispering harsh criticisms to me: “You can’t draw well enough.” “You’re a horrible person and nobody at camp wants you back.” “You can’t spend a year in Israel because there’s something wrong with you and you aren’t fit to be around normal people.” “You’re not feminine enough and you should have outgrown that tomboy stage years ago if you want anybody to accept you.”

To make matters worse, I noticed early on that the teacher of the figure drawing class did not seem to like me, often talking to me in a condescending manner. I don’t remember specifics, but I do recall that I was trying to convince myself it was just my imagination. After all, my own parents often commented that I "misinterpreted" and "read too deeply into things"-- even when I knew damn well what I was looking at. One day when I was in the bathroom, a girl from the class commented, “I don’t like the way the teacher talks to you.” At least there I felt validated, that this wasn't my imagination. I was also glad to know that somebody was on my side.

As time went on, it was becoming increasingly clear that the teacher not only didn't like me but genuinely disliked me. I watched in resentment as she got along well with the other kids and really seemed to like them. They also seemed to like her, often laughing together like old friends. Her loud, boisterous laugh got on my nerves, as if it were rubbing in my face how the others could get along with her and I couldn’t because there was something wrong with me. What indeed was wrong with me, I wondered, that made her feel that she didn't have to be nice to me? Once, she even chastised me for arriving two minutes late for the 10:00 class. A week or two later, she assured another student who apologized for arriving at 10:07 that "seven minutes is no big deal."

At some point during the semester, something happened that made the teacher take me into the hallway in frustration. Unfortunately, I don’t remember what it was, but I am confident that if I found a record of the incident somewhere, it would come right back to me. We had a tense conversation that ended in some kind of truce, for lack of a better term. At some point during the discussion I mentioned that other teachers I’d had in other classes at the school liked me.

But the dynamic between us did not improve.

In the second-to-last week of class, I was particularly on edge, the raw exposed nerve particularly irritable from the accumulating tension over the past few months. The teacher did her signature laugh when talking to one of my classmates. For some reason, it was at that particular moment that I had reached my limit. I whispered, “Aw, shut up!” At least, I had meant to whisper it, but I accidentally said it loud enough for her to hear.

The teacher yelled, “Excuse me? Who did you just tell to shut up?”

The room fell silent, all eyes on the teacher and me.

In a panic, I stammered, “Nobody. Myself.” The teacher grabbed me by the wrist like I was an unruly child and pulled me into the hallway. Eyes narrowed into slits, she leaned forward, inches from my face. She yelled at me about every imperfection I had: speaking out of turn, getting openly frustrated with my artwork, not always following directions (I guess she thought this was intentional). At one point, she said, "I have tried putting myself in your shoes. I realize that there is something wrong with you." She also said, “You are going to fuck yourself over if you think you can go through life acting like this. I have had it with you. You make me feel like shit! Oh, you know all those other teachers who you said liked you? I’ve talked to all of them and they said they didn't like you. I have been pulling every string that I can to make sure you don’t go to this school.”

Humiliated from having heard my own self-criticism come out of another person, I sheepishly said, “My teachers in high school like me.” Her response was an even more exaggerated version of her signature laugh, as if it were the most ridiculous thing she had ever heard-- how could anybody like me? Then she told me I could come back into the room and work but I wasn’t allowed to talk to her. She said if I had questions to ask the other students.

Needless to say, I only went back to get my things. Then, I found a payphone and called my parents who, thankfully, had cell phones back then. They were at a restaurant with a friend. Just as their food arrived, they got my call and had to leave to pick me up. When I found out this information, I thought to myself, "God, my parents can't even have breakfast without me fucking things up. What is wrong with me?"

My parents arrived, and I waited outside with my mother while my father went in to talk to the teacher.

When Dad came back outside, he told Mom and me about the conversation he'd had with the teacher. He said that as soon as the teacher realized that the guy who came into the room was my father, she sent her students on break and vigorously shook his hand with both of hers, obviously knowing that she was in trouble. Then, when my dad called her out on saying that she was going to make sure I didn’t go to the school, she said, “Oh I just mean if she comes I’ll make sure she gets more psychological support.” Dad said, “I’m her father and I’ll be the one to decide what psychological support she needs, not you.”

In a desperate attempt to explain the situation to my parents, amid tears I said, "It's my OCD!", invoking my recent (and ultimately incorrect) self-diagnosis of obsessive-compulsive disorder to explain why I had the issues that I did. Dad shook his head and said, "No. This is just another case of you saying the first thing that pops into your head." On the car ride home, Mom told me that what I had done was inappropriate and that I needed "to learn to behave appropriately." It frustrated me that my parents seemed to think I was acting like this because I wanted to.

Don't get me wrong-- my parents were pretty pissed off at the teacher, but at the time they failed to grasp the reality of situations like the above. I had tried so many times over the years to explain that outbursts like these were the end result of trying to contain myself and the unbelievable anxiety I felt, but they never seemed to get it. Aside from the autism spectrum being mostly unknown, concepts like "chronic anxiety" were not topics of mainstream discussion. "Anxiety" was understood to be a momentary discomfort, not something that engulfed your entire life. I didn't even use the word "anxiety" to explain myself; rather, I often invoked a rush of adrenaline and the fight-or-flight response associated with it. I only even knew what these things were because Dad once told me about something he had read about them in college.

Years later, I found some notes Dad had taken when he called the school the following Monday to talk to the director of the Saturday program. Apparently the other teachers hadn't wanted me in their classes either.

This incident happened almost twenty-three years ago, and this type of issue that I had is largely under control. But the memory still hurts sometimes. It hurts because this was not the case of a teacher who was mean to everybody else also being mean to me. And the message that I got from the incident was one that I continued to get well into my adult life: That I am just "too much". I've been long expected to understand that I have had this kind of profound and negative effect on people that violates them in horrendous ways, and that their extreme reactions, while not ideal, are understandable under the circumstances. In fact, despite how upset my parents were with the teacher, they actually urged me to go back for the final class-- which I had no intention of doing-- because in doing so I would convey the message that I wanted to be "mature". That carries the implication that my teacher's response, while wrong, was not egregious. And no, I did not go back.

It also hurts because when I discussed this incident in autism groups in Facebook and asked if anybody had similar stories, all the "similar" stories I got were ones involving them as elementary school kids missing directions or crying in class only to get indignant hell from a teacher. None of them were stories about them in high school getting in trouble, let alone for saying something stupid. I suppose it's possible that they're just not writing about them because they're too embarrassed. But I get the impression that many of them learned early on that if they just shut up they would stay out of trouble. I don't know if it means that I was exceptionally bad at masking, that it was actually a sign that I was mentally stronger, a combination of the two, or neither.

I realize that we as a society have come lightyears since the '90s and that if this had happened today, there is a good possibility that the teacher would have been fired on the spot. But unfortunately, I was a teenager in the '90s and I have this story in my knapsack. It still hurts, and it's still confusing.

I still have the same self-doubts sometimes.

Frustration, Anxiety, and Tension Part 1: You're Not Trying

On YouTube I found an illuminating interview with special-needs educator Richard Lavoie. He recalls a time in the 1970s in which he was working as a teacher at a boarding school where he also tutored a fourteen-year-old boy named Craig who had severe learning disabilities involving reading and writing. One day, Lavoie asked Craig to write a story about his dog for a homework assignment. Craig turned in the essay the next day, and the day after he showed up early to his class to wait for Lavoie. He had worked so hard, spending the evening meticulously proofreading his work while his classmates were out playing basketball, that he was sure it was “perfect” and that his teacher’s feedback would reflect that. 

But Craig’s essay was so rife with spelling and grammatical errors that there was more of Lavoie’s writing—in red pencil—than Craig’s. 

I can completely relate to the unbelievable pain, disappointment, and frustration that Craig must have felt when Lavoie handed the essay back to him. Not because of any verbal learning difficulty I had—teachers often were impressed with my writing abilities—but because of the sheer agony I often felt when I worked hard to overcome an issue that was related to then-undiagnosed autism. Often, parents, teachers, and peers would identify a social faux pas that I continually exhibited. I would work on it, feel immensely proud of myself when I thought that I had overcome it, and then find out that something I did had pissed off everybody in the room. Sometimes what I had done was related to whatever issue I had been working on. Sometimes it was something completely different that would never have occurred to me would be seen as problematic. I felt like that no matter what I did, no matter how hard I tried, it was not good enough, that there was always something I was missing—and that I had nobody to blame but myself. 

Fortunately, Craig’s learning disability was well-understood by some educators in the 1970s; at the very least, Lavoie was one of them, and he knew better than to tell Craig, “You’re not trying” and realized that Craig’s struggles were largely beyond his control. Unfortunately, in the 1980s, 1990s, and well into the 2000s, autism—and the social disabilities that come with it—were not understood at all. Autism as a “spectrum” was largely unknown in those days and not something one would dream of diagnosing an honors student—let alone a female honors student—with. Any social faux pas that I committed was potentially seen as intentional, indicative of poor upbringing, my resistance to learn from mistakes, and sometimes even that I was a bad person.

Often, it was my own parents who told me “You’re not trying.” This is not reflective of them being ignorant about “invisible” disabilities in general but rather the prevailing ignorance about social disabilities—autism—throughout the era I grew up in. I struggled with math, and almost every night my father had to help me with my homework. Dad never would have dreamed of telling me, “I don’t see you trying” in that context. He and Mom, however, sometimes said that exact same thing when I made a social mistake. If I told them I was trying, they said, “You need to try harder.”

They had no idea how hard I was trying. 

One time, during my senior year of high school, Dad even said, “You’re not done” in relation to my efforts to improve myself, further cementing my perception that no matter what I did I would miss the mark. Additionally, I felt that missing the mark was the result of not just a failing on my part, but a moral failing. There were many times in my life where I hated myself, where I felt I was a horrible person who violated other people in egregious ways, rather than that I was just socially awkward. 

Lavoie’s experience with Craig inspired him to do a workshop for teachers, using techniques that convincingly simulated the learning disabled-experience for them. In 1988, at the time that it was made, there were still teachers accusing kids of not trying and telling them to “try harder.” There was even the ignorant perception that these kids were deliberately making the teachers’ lives difficult, just like many people in my life thought I was deliberately making their lives difficult. I can only imagine what kids with severe academic learning disabilities thought of themselves if they grew up in an era in which their needs were not understood. 

I will say this though—never ever tell someone, kid or adult, that they are “not trying.” Just listen. And while you’re listening, don’t tell them that you know exactly how they feel unless you truly have had a comparable experience. Lavoie told Craig, “I know exactly how you feel” after Craig cried over his failed essay—and he admitted it was the stupidest thing he could have said to him. I also realize that I might be guilty of doing the same thing when I compare my feelings of inadequacy to Craig’s. I want to clarify by saying that I relate in terms of that the emotions are similar. But just like I’ll never truly understand what it’s like to have severe writing problems, Craig will probably never truly understand what it’s like to be autistic. 

Neither did a particular teacher I had in high school. Stay tuned.

Masking (the autistic kind, not the COVID-19 kind)

As always, names and places changed...

In a journal entry dated January 31, 1996, I wrote, "Everything about me is wrong. I want to try to change it by June."

At the end of the previous summer, I wouldn't have dreamed of writing something like that in my journal. I had spent almost two months at Camp Negev, where I felt accepted and appreciated for the first time. Entering 9th grade (the final year in middle school in my district) in the fall with my newfound self-esteem-- despite having endured several years of bullying-- I felt incredibly optimistic. 

That optimism, however, didn't last. Having been regularly teased since 2nd grade, the childish teasing escalated to bullying by 5th grade and to severe bullying by 8th grade. In 9th grade, it had reached a crescendo. I didn't feel emotionally or physically safe coming to school. Every day in ceramics class, kids threw balls of clay at me while the teacher told me to "just ignore" the physical assault I endured. In other classes where I was regularly forced into group projects (times have changed, but back then teachers seemed to think there was something wrong with you if you preferred to work alone), my ideas were shouted down or ridiculed simply because I was the one who thought of them; sometimes, a more "popular" student would propose the exact same idea that I had suggested just minutes ago, and the other kids would embrace it. Often, these group projects ended up turning into episodes of taunting, rife with bitingly personal comments: one of many instances of emotional abuse at the hands of the other kids.  

It was turning into the worst school year of my life.

One Saturday or Sunday that year, I spent the morning crying in my room. I didn't want my parents to hear me because I felt that they blamed me whenever I was bullied at school, saying things like, "You joke around too much," or "You don't know how to interact with people" or "you bring it on yourself." I can't remember if my parents heard me crying and then forced it out of me, or if the amount of time I was in my room made them suspicious, or if I purposely cried more audibly because I was so tortured that actually wanted them to hear me because I needed to talk to someone. Whatever the case, I eventually ended up telling them about an incident that had happened on Friday. If I remember correctly, it was some taunting that had occurred during a group activity in science class.

"Why do kids do this to me?" I finally wailed.

Mom, aggressively pointing a scolding finger at me, shouted, "Because you don't even try to fit in. Believe it or not, appearance does matter. Look at you! You look like a 6th grader! Let me tell you something: you're not going to high school next year dressed like this!"

How was I dressed? I was wearing a pair of tan jeans and a green Bugs Bunny sweatshirt. Mom then pointed out a bleach stain on one of the pant legs that I had failed to notice. She yelled, "How could wear pants that have a stain on them?" When I told her that I hadn't noticed the stain, she said, "This is what girls your age notice!" I didn't know what to tell her about that. But her comment made me feel like there was something wrong with me.

Then, my dad started in on me about my hair, the fact that I hadn't worn it down for the past year unless forced to. Although not transgender, I felt somewhat dysphoric about my thick, wavy, Ashkenazi Jewish hair sending the message "pretty bombshell model" to other people, because that wasn't me. I was a tomboy, androgynous as hell, and that's how I was comfortable presenting. But my parents made it clear, not just that day, but several times, that my androgyny was immature and unacceptable and that they-- and society-- wanted the "pretty bombshell model".

After a protracted fight, I retreated to my room again to cry, feeling even worse after talking to my parents. Clearly, my initial instincts to try to hide the incident from them were founded. I didn't feel supported in personality or how I dressed. The interaction with them left me humiliated and feeling like a worthless excuse for a human being. I thought about my previous summer at Camp Negev, how I had been accepted for the first time. However, I had arrived under extreme pressure: I told myself that this was my last blank slate until college, that I had to fundamentally change things about my personality if I wanted to be accepted and have friends. 

Between the criticisms about my behavior and my clothing, my parents were demanding that I do something that is now referred to in the autism world as "masking", and it was what I had told myself I would have to do if I wanted to make friends at Camp Negev. It's a phenomenon that a lot of autistic adults-- especially autistic cis women-- have referenced in discussions about growing up with undiagnosed autism. What is masking? Well, it's exactly what it sounds like: inhibiting your natural inclinations in favor of ones that are more socially acceptable. The author of this article summed it up like this: "fitting in, in order to avoid being coddled, babied, ostracized, hated on, harassed, or bullied for being different."

Holy crap, does that hit home. 

I occasionally tried to mask, but it backfired spectacularly. If I stopped myself from telling an inappropriate joke or talking about some movie that only I was interested in, all it did was delay the inevitable and I would do both. That's not to say there isn't a time and place to talk about movies or tell inappropriate jokes, but I had been trained to think that any time I did these things I had committed some horrible, unforgivable moral failure, that I had violated the other person in egregious ways and that any anger or emotional abuse that they responded with was justified. 

I often commented that I had to think about everything before I said it. People who I told this to said that everybody has to do that. No. That's not fucking true. There's a difference between occasionally having to stop oneself from saying something that might not go over well and having to think about every goddamned thing before saying it. It caused severe anxiety in me that I am still feeling the aftermath of today. It was frustrating and painful trying to find a balance between being myself and being what I had to be in order to be accepted. Since I very rarely tried to mask, friends at camp often commented that I was one of the strongest people they knew. At home, my parents dismissed my strong sense of self as rigidness, stubbornness, and being set in my ways.

I am almost finished a book by Sarah Kurchak called I Overcame My Autism and All I Got Was this Lousy Anxiety Disorder. Kurchak succeeded in masking when she was young and, like many women who used masking as a strategy in their youth, suffers severe anxiety and trauma. Had my mother known this woman as a kid in the '90s, she probably would have seen the adjustments she made and said, "See? She knows how to take advice." Only fairly recently have she and Dad finally seen this sort of thing for what it is-- masking, which is ultimately detrimental to the mental health of autistic people.

In her book, Kurchak said something very relatable about the mindset that masking (or, in my case, attempting to mask and failing at it) leads us to:

[The aftermath of a mistake] follows the same pattern: I make a mistake. I react poorly to it. Before I can take the time to properly process what has happened, what it might mean and what I should do, my mind is already racing with worst-case scenarios. Then it gets stuck in a repetitive loop. Even if I do manage to recognize that my thought process is starting to spiral, there's nothing I can do to stop it at this point. It's like a broken record skipping over and over and over and over the same self-loathing sound bite.

It made me think about how in the summer of 1995 I had told myself that going to Camp Negev was my "last blank slate until college", as if who I was, was so wrong that I had to fundamentally change myself in order to deserve friends. I was fourteen years old, and back then it didn't even dawn on me how horrible it was for a young kid to have to think like that. But that was my reality back then, what society had taught me. Adults didn't even bat an eye about it. I even remember asking my shrink, who I have since dubbed Dr. Bonehead, "What if I mess up and I'm not able to make any friends?" He said, "Well, I guess it will be a disappointing summer." In response, I quipped sarcastically, "Boy, you're insightful."

The other day, I was telling Chuck, a counselor from my 1997 Israel trip (affiliated with Camp Negev) who I recently reconnected with and befriended, about how I had "spent the year in sober reflection" after that summer. Why had I been in sober reflection, let alone for an entire year? Because that summer, when I was sixteen, I had had a huge crush on Chuck and constantly followed him around like I was Pepe LePew. In addition, I had been dealing with unbelievable anxiety due to some issues with my parents that had escalated right before I left. On top of that, the fact that there were about 90 kids my age on the trip (as opposed to 20 kids my age or fewer at camp) was overwhelming, and I was also frustrated about the sudden overemphasis on hookup culture and substance use. I was having frequent meltdowns, which back then society dismissed as childish temper tantrums.

Between the stress from my parents, the crush, and the culture on the trip that contrasted sharply with camp, my anxiety was in the stratosphere. I was a loose cannon, my mood spun on a dime, and I even got into a physical fight with someone. These were all mistakes-- stupid mistakes-- to be sure, but why did I have to spend an entire goddamned YEAR feeling guilty about my behavior? Why did I eventually entertain the notion of finding all the email addresses for my counselors and contacting them, apologizing for being so difficult and letting them know that I was trying to change? Kids on that trip did a lot of stupid things because, well, they were teenagers. It's just that my behaviors were a different kind of stupid, but not necessarily worse. Hey, you know what? I wasn't malicious, and it wasn't like I was setting things on fire. And boys get into physical fights all the time; people see that as "normal". 

Wouldn't this have been a better way for me to contextualize the mistakes I had made that summer?:

But the reality was, throughout my teenage years and into my twenties I was expected to be in sober reflection about my behavior constantly, especially when I failed to mask, which was most of the time. Bottom line, people cannot live that way. And the fact that it's mostly cisgender women who try to mask their autism tells me something very damning about our culture (there may also be a biological component to this, but obviously it's not easy to tease out) and the way women are expect to be constantly nurturing, anticipating what other people need and practically having an orgasm while doing it. 

Remember those rubber masks you would put on every Halloween and how uncomfortable they were? This is that.

The difference, of course, was that you knew you were expected to take the masks off.