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The first time I heard the word autism was when my mom told me about the movie
Rain Man. She was excited about it. I don't know if she had recently seen it in the theaters or if my parents rented it and saved it until I was in bed or what, all I remember is the fact that she was taken by the way that Dustin Hoffman pronounced "Judge Wapner." She spent days repeating it over and over to herself as she did the housework.
That wasn't the only line that she repeated. She also repeated the bit about going to Kmart to get more underwear. She actually said that whenever we actually needed to go to Kmart. I was only about six, and I did not know that I was autistic when she first told me about this movie that had fascinated her so much and made her so interested in how "those people" could manage to do so many intellectually sophisticated things when they couldn't even "properly express themselves."
I was six years old, but every time I heard "Wapner" or "Gotta go to Kmart" echoing down the hallway and into my room, I cringed. Something in me recoiled from it--not just from the idea of being seen in public with her while she did this, but from the idea that I had to endure the company of someone who would imitate a disabled person for her own amusement. At the time, I had no words for it. I simply knew that my mother's behavior made her Not Trustworthy.
It was a couple of weeks after she first started doing the bits from Rain Man before she finally explained what the movie was about. I don't know if it was my discomfort with her behavior that led to it or not. She did sit me down individually, without my brother or my dad, when she explained it to me. She told me that she found Dustin Hoffman's portrayal to be very emotionally deep even though he did not get to speak his feelings at length. She also told me that the movie was about how a younger brother stepped in to take care of his big brother after their parents died, and that the movie was about how terrible it was for that older brother to be kept in an institution where people regulated what he did and where he was allowed to go.
I was eleven before I finally saw the movie for myself. In between my mother's month of being obsessed with it and my finally seeing it for myself, she was institutionalized twice and diagnosed with bipolar disorder. If you ask her about it, she will tell you that she was in the hospital for three weeks before they came up with the diagnosis, and that she had to suggest it to the doctors herself. I'm not sure about that, but there are a lot of things about my childhood that I am not sure about. All I can go by is what I remember and what my family tells me.
What I do know is that my mother is Not Trustworthy.
During those intervening years, I also learned marginally more about autism than what my mother's understanding of rain man imparted to me. For example, I learned from my friend Aaron that his brother was autistic, but that Rain Man was not at all like the autism that Aaron knew from his relationship with his brother. His brother did need to go to a special school (as Aaron put it), but he was in fifth grade and he was doing well. He would stay in that school until he finished high school, but other than that he was just the quiet guy who joined us for Dr. Mario sometimes.
I used to try to understand what it meant that he was autistic, because I did not have a firm idea about what that meant other than that he did not think the way "the rest of us" do. I spent hours when I was alone in my room trying to imagine what it would be like to experience the world the way he did, even though I did not know how he experienced the world. When I was not doing that, I listened to my parents talk about family issues through the heating vent. I couldn't make out everything they said, but I could tell that they were going back and forth about special education access, how smart one of us was (I could not tell if it was me or my brother at the time), why my mother hated us hearing rock n' roll when we were in the car with my dad, and whether or not I would "fit in" better at a Catholic school where everyone had to wear uniforms.
Now, as an autistic adult who did not receive any information about his diagnosis until his late twenties, I wonder if the parts of their conversation that I could not make out would have been about autism. I don't know. I can't ask.
During these years, I expressed myself by drawing cartoons. They were hellishly violent, often incorporating imagery about nuclear Armageddon alongside falling anvils and other slapstick routines that I filched from Bugs Bunny. Some of them might have been borderline racist. I don't know, because I don't have the cartoons any more, but I drew them while watching the three hour blocks of classic Loony Tunes that aired in the early morning on TNT back in the late eighties and early nineties. The long blocks that were made up entirely of cartoons from the forties and fifties. So I might have drawn some racist cartoons without realizing it.
I do know that my cartoons bothered my mother. To me, they were just my take on Roadrunner and Daffy Duck and Tom & Jerry. If they were disturbing to the adults around me, then maybe that should have led to them asking themselves what scripts I was following when I decided that "funnier" also meant "more violent."
My fourth grade teacher encouraged me to express myself through these cartoons without judgment. Some of the other kids, my friends mostly, started drawing them too. Most of the rest of the boys in the class used the cartoons as a reason to bully me, though. It took two weeks of me getting beaten up after school before anyone intervened. Later that year, my mother went into an in-patient mental health program for the first time. The kid who beat me up never bothered me again after that, but by the time that happened, I had already armored myself against him by seizing all of the things he called me--Freak, weirdo, queer--for myself.
Except queer. My parents would not tolerate me using that word about myself. They said it was derogatory and that it was dirty. They said that no one would ever apply it to themselves.
The year I finally watched Rain Man was also the year that I was forced to work with a teacher who thought that fifth graders were "too grown up" to doodle during free time, and that we should either read books or write journals if we got our work done early. So, instead of drawing cartoons, I wrote stories. I wrote out all the hyperbolic slapstick violence that I usually drew with funny motion lines and cute voice bubbles. After a point, I was chastised in front of the class during a reading of my work because it was "sick" and "inappropriate".
My mother insisted on reading my entire journal just a few days or weeks later, I can’t really remember which. When I said no, she shut herself in her bedroom with it and read the entire thing. My screaming and throwing myself against the door only made her more determined. My embarrassment and my consent did not matter. The idea that I might have written something that I did not want to share did not matter. All that mattered was that I was hiding something.
Later that year, she sat me down to watch Rain Man. Neither of us said anything during the movie. At the end of it, I agreed that both actors had done a good job with their parts, but I did not know how to feel about the movie, except to feel even worse about the fact that my mother still found the "Judge Wapner" bit funny. I still didn't know that I was autistic, but I knew that the movie was wrong. I didn't have words for it, though.
A lot of people ask me why my choices about the language used to describe me--both my choice to embrace the word queer and my insistence on identity-first language (autistic) over person-first (person with autism) are what they are. Other people ask me why I think that it's so important to declare that my otherness is what I am.
All of the reasons people give me for not respecting my language revolve around the comfort of the people who are deciding things for me, not my own comfort. It's their othering that they want me to mask, not anything I have done to myself. Their aversion to speaking openly of the fact that I experience this othering is just a way for them to remain in denial about the fact that they contribute to it. I do not owe those people the right to be comfortable if it causes me discomfort to grant it, and most of them will forget about the encounter and their discomfort a little while after it’s over. I won’t. I have to walk around with the scars from each battle over the words that they use to label me.
My words are bandages that then become weapons as I heal, and I will not let anyone else force me to use less effective ones.
Even if I own my own home and work full time, a world where I defer those decisions out to others is an institution, a place where my movements are controlled and monitored by others who think they know better than me, and I am committed to living in a world with no institutions. A world where people like me have supports but where we are not "managed." Where our consent means as much as anyone else's, and where we can not be dismissed for communicating in the ways that are most effective for us.
I wrote Nothing is Right to call attention to the way that a lack of diagnosis and support creates an institutional environment that permeates every aspect of our existence and forces us to retreat from the limited choices forced on us. It's not about autistic people being in their own world or not understanding what's going on around them. It's about Autistics making their own world because they are too keenly aware of what's going on around them. A lot of people have asked me how much of that book is "true". I always tell them the whole thing is true, but not all of it really happened. Then they ask me how much of it really happened.
Too much. Not the whole thing, but too much.