Four years ago today, I studiously avoided watching the inauguration. Instead, I wrote the introduction to Spoon Knife 2: Test Chamber, a volume that seemed even more vital then than it had when AutPress released its call for submissions ten months earlier.
Four years later, I still find the Spoon Knife 2 intro meaningful. Here it is, reprinted in full, for another inauguration day – and the entrance into another test chamber.
National Day of Testing: An Introduction
“You know what my days used to be like? I just tested. Nobody murdered me, or put me in a potato, or fed me to birds. I had a pretty good life. And then you showed up.” – GLaDOS, Portal 2
My debut piece in The Spoon Knife Anthology relied heavily on the mythology of Portal, a video game in which the player-protagonist navigates a series of nineteen test chambers, accompanied by promises of cake and increasingly sinister commentary from a sentient supercomputer named GLaDOS. As the player progresses, completing each chamber becomes increasingly difficult. Breaking out of them altogether becomes unavoidable.
Portal is primarily a puzzle game. The same test chambers that trap the player-protagonist and obscure the final goal also provide both the tools of escape and the necessary practice in how to use them. The moment of escape is devilishly simple but requires quick thinking; the game’s ending implies exactly how far one can test the chamber.
For several months after submitting my first Spoon Knife piece, the concept of the “test chamber” intrigued me. “My Mother, GLaDOS” was my first tangible test (of the) chamber, the first time I’d committed some of the rawest and most gaslit parts of my childhood to print and the first time, outside the safety of my therapist’s office, that I had ever criticized the malignant programming that tested me. I played with the concept of the “test chamber” for several months before generating the Call for Submissions that produced responses in the form of the poetry, fiction, and memoir that appear here.
The writers (and editors and publishers) of the book you now hold in your hands all have this in common: we all diverge in some way(s) from the normative, the expected, the acceptable. We’ve all been pathologized, scrutinized, corrected – often, in horrible ways.
As I write this, the United States finds itself in a new test chamber, one whose outputs will inevitably affect the rest of the world. Those of us who find ourselves already marginalized, like the authors represented here, will suffer first, but we will not suffer alone. All of us need the tools of defiance and resistance.
The Spoon Knife Anthology gives its readers the chance to name demands for compliance when we see them, and to try on the means of defiance and resistance. In Spoon Knife 2: Test Chamber, we explore what happens when those tools – and others – are applied to a particular purpose or demand. We test the chamber in which we find ourselves, and in so doing, we find the power to subvert it.
Dani Alexis Ryskamp January 20, 2017
For more literature on compliance, defiance, and resistance, visit autpress.com.
I’m a co-founder of Autonomous Press; I’ve published multiple works through Neuroqueer Books; I was the managing editor of Neuroqueer; my MA thesis was on poetry as a neurodivergent/neurotypical common language; and my current project is a paper outlining what is is we mean by “neuroqueer,” in which I’m relying heavily not only on the writings of the three originators of the term but also on being able to text them memes at 2 am.
So I guess I’m qualified to pontificate on neurodivergence in literature, lol.
The panel will include specific questions aimed at each of the participants, plus a half-dozen or so general questions. I have already forgotten what the me-specific question is, and I have no idea what my co-panelists will say, so the panel itself is worth seeing. I will insert the day/time/etc. info here when I have it.
Here’s a sneak preview at what’s banging around in my head in response to the questions for the panel.
Opening Remarks on Neurodivergence in Literature
I fully expect to riff off whatever everyone else says at this point in the actual panel presentation. For the purposes of this blog post, which has a somewhat different audience, I’ll start by defining some terms:
“Neurodivergence” is commonly used to refer to everyone whose brain isn’t “normal” (a term with its own problems that I’ll get to in a second). Currently, it’s often a catch-all term for things like autism, ADHD, and PTSD, as well as things like traumatic brain injuries or the effects on the brain from drug use. In disability activism, it sometimes gets tagged “our minds are not fine,” a play on early activists’ claims that physical disability should not preclude them from full social participation because “our minds are fine.”
When I discuss “neurodivergence in literature” for the sake of this blog post, I’m primarily interested in the ways in which author and narrator perspectives diverge from what we think of as “typical” cognition. I’m interested in divergences from both our idea of “normal,” or what already-is common and expected, and from “normative,” or what we believe should be common and expected.
The difference between “normal” and “normative” is one I don’t see addressed in the vast majority of conversations about neurodiversity/neurodivergence, to our detriment. Those two ideas interplay in ways that hugely impact how we understand cognitive, emotional and neurological differences, yet we rarely if ever tease them apart.
For instance: When we say a person is “neurodivergent,” we mean they differ or diverge in some way from some other reference point – typically referred to as the “neurotypical.” What we often don’t do is distinguish whether the “neurotypical” reference point is “normal,” i.e. common or expected, or “normative,” i.e. someone we think should be normal or expected.
Sometimes it doesn’t matter, but sometimes it matters a lot.
Also, I personally make a distinction between talking about “neurodiversity in literature” and “neurodivergence in literature,” as well as between either of those ideas and “neuroqueering” as a practice. To me, “neurodiversity in literature” speaks more to who gets to be represented or do the representing, while “neurodivergence in literature” is more about what and how non-normal or non-normative bodyminds get represented. “Neuroqueering” is a specific species of “how,” and it’s not actually the topic here, which is a shame because I’m currently obsessed with it.
What is the Current State of Neurodivergence in Literature?
In three words: “New, but not.”
Literature has always been a way that people explore neurodivergence, just as neurodivergence has always existed within the human population. Humans as a whole have always been neurodiverse.
Right now we seem to be at an inflection point. The #ownvoices movement and similar changes to how we think about who gets to tell stories and who gets to star in them have made publishing more accessible to people, including neurodivergent people, not only to get published but to do so without having to mask their own neurodivergence.
Yet this inflection point comes with its own risks. Every time we define a set as separate from or different to another, we risk balkanizing it. That’s a risk we face with neurodivergent authors and characters currently: That we’ll reach a place where #ownvoices neurodivergent literature becomes a gimmick.
What Are Some Successful Instances of Neurodivergence in Literature (as an author or reader), and What Makes Them Successful?
Some of the most successful examples of neurodivergence in literature do not deal with authors, characters or readers with diagnosable conditions. Often they succeed because no one involved is diagnosable. Rather, the story moves the reader into the position of experiencing neurodivergence without getting to label it “oh, this is what it’s like to be autistic” or “this is what it’s like to have hallucinations” or whatever.
A few mainstream releases that come to mind include Jeff Vandermeer’s Annihilation, Yoon Ha Lee’s Machineries of Empire series, and Phillip Pullman’s His Dark Materials trilogy. Each book/series takes the reader on a rather intense departure from what we think of as normal/normative, rational cognition.
Yet in each case, there’s no tidy DSM diagnosis to slap on that experience. What’s the ICD-10 code for “becoming an eldritch being” or “eating a dead murderer’s memories” or “conversing with one’s heart as it walks around outside one’s body”? These authors and their works take readers into that experience without categorizing or defining it, and it leaves a lingering effect on the reader.
What Are Some Examples of Unsuccessful Works?
Nearly every book that tries to present neurodivergence by means of labels ends up reading as a failure to me. Joyce Carol Oates’s Carthage, for instance, is split directly down the middle as a success/failure, and the moment it makes the turn is the moment Oates outs the protagonist as autistic.
Prior to that point, the reader is immersed in the experience of being a depressed autistic woman in a claustrophobic small town. Oates actually captures that very well (I speak from experience, having been this person). Cressida’s decisions make sense in the context of that claustrophobia and her depression and her deeply rooted sense of being irrevocably different yet unable to explain it to anyone.
But the moment we’re told “Cressida has autism,” suddenly the entire story is about that diagnostic label. Suddenly Cressida is not relatable. The reader gets yanked out of the experience of neurodivergence and back into a world where “normal” is a very tight, specific set of feelings and behaviors.
Labels have such a powerful effect on neurodivergence in art, and it’s rarely a good effect. I have always appreciated, for instance, that Bill Watterson staunchly refused to respond to questions about whether Hobbes was a “real” tiger or a “stuffed” tiger or “just a product of Calvin’s imagination.” The truth of Hobbes, of course, is that he is any/all of the above, all at the same time. To carve off any of those facets in the name of “understanding” Hobbes is to murder him.
Incidentally, this is also why none of the characters in my own novels get diagnostic labels in the text. Several of the humans have diagnosable neurodivergences. But the one time I revealed one to a reviewer, the reviewer managed to miss every other neurodivergent experience in the text – and even to miss some of the labeled character’s most obvious symptoms!
What Do You Hope Will Not Happen Regarding Neurodivergence In Literature?
I really hope the entire concept of “neurodivergence in literature” doesn’t get reduced to a gimmick or a sales pitch.
I do think there’s an incredibly important role for #ownvoices authors and books. But I want to avoid a world where we start requiring authors to out themselves as some kind of diagnostic-label neurodivergent in order for their depictions of divergence to be taken seriously. Conversely, I want to avoid a world where we assume that every author who writes neurodivergence well can be reduced to a diagnostic label.
“No label, no divergence” is just neurotypicality under another name.
What Do You Hope Will Happen Regarding Neurodivergence in Literature?
I hope we move away from the “normal,” “rational,” “common,” “typical,” “expected,” etc. as the default expectation, in reading and in life. I want readers to be ready for anything when they open a book, and willing to go wherever the book does.
My undergraduate class in Short Fiction was taught by a man who insisted that if a protagonist’s actions didn’t make sense, either the protagonist was mad or the writer was a hack. This, to me, is a prime example of neurotypical-as-normative dominating the conversation. There is no room from such a perspective to explore the myriad worlds of the human mind – to expand ourselves via reading as well as to expand the spectrum of human representations in text. There’s only “this has to make sense to me” or “it’s crap.”
I want to see labeling fade away. I want to see neurodivergence expressed in literature as actions and experiences, rather than lists of symptoms. I’d like to see readers get so used to experiencing characters’ mental/emotional states that they stop asking for diagnostic labels and actually find them jarring.
Authors don’t need to prove themselves or their characters by sharing diagnoses. They need to provide an experience that changes the reader. Readers, in turn, need to be open to that experience as one that can change them, rather than pushing it away with “oh, well, if this character doesn’t have these symptoms or that diagnosis then they can’t be neurodivergent.”
And I don’t think the road to that world is as long as it might be. I don’t think it was ever as long as folks like my Short Fiction professor want us to believe. Literature is a malleable medium; it’s always had room for the weird and often delighted in it.
I recently earned the dubious honor of being named a Quora Most Viewed Writer in the topics “ADHD” and “Adult ADHD.” As I understand it, that has more to do with the fact that I write about these topics a lot than it does with the actual quality of my answers.
As one might expect, the most commonly-asked questions in these topics can be grouped into a few basic categories. There are the medication questions. There are the closely-related “alternatives to medication” questions. There are the “is this a symptom/is so and so ADHD” questions. And so on.
The biggest category of questions, by far, is the “I’ve just been diagnosed with, or suspect that I have, ADHD” category.
I find myself fielding answer requests to questions in this category over and over. Since my answers to the most common iterations are always the same, it made sense to list them somewhere for posterity. Think of this as a FAQ for Folks Who Have, Or May Have, ADHD and Holy Crap What Does That Even Mean.
I took an online test and it said I probably have ADHD. What do I do?
First: No online test is sufficient to diagnose you with ADHD. For that, you need a doctor, psychologist, or similar professional with experiencing in diagnosing ADHD – and you’ll probably need to take one or more tests that can’t be administered online. So take that online result with a grain of salt. (After all, you can just as easily find an online test that will “diagnose” you as an Idaho potato or as Dorothy Szbornak.)
If you took the test because you suspect something is up with your brain and you wonder if ADHD is its name, schedule an appointment with your primary care doctor (or your psychologist if you happen to have one already). Bring along the results of your online test. They’re not official, but they can serve as a good conversation-starter.
Talking to a doctor is optional. If you don’t feel like the answers you gave on the test or its results are any big deal, you don’t have to make an appointment.
If you think the results are a big deal but you cannot talk to a doctor for any reason, Googling “non-medication treatments for ADHD” may give you some ideas about how to rearrange your life to better accommodate your brain. The good part of these interventions is that they often help people stay more organized and focused whether or not they have ADHD. So even if you don’t qualify for an official diagnosis, you’ll still be doing something good for yourself.
How did this happen? Did I give myself ADHD? What did I do to deserve ADHD?
ADHD is a neurodevelopmental difference: It is a specific type of way the brain forms in utero that is different from the way most brains form. Your brain was structured for ADHD before you were even born.
ADHD doesn’t happen “to” people, any more than having blue eyes or particularly small hands happens “to” people. You can’t give yourself (or your baby) ADHD, nor can you “catch” ADHD from some outside source.
There’s a lot we don’t know about how or why, exactly, ADHD forms. There does appear to be a genetic component – namely, if you have one or more relatives with the same symptoms you have (whether or not they were ever diagnosed), there’s a higher chance that you’ll have ADHD too. But some cases of ADHD appear even when there’s no obvious genetic link.
What we do know is that ADHD is not a punishment. You didn’t do anything to “deserve” it, and you can’t do anything to “deserve” not having it. ADHD is not a statement on your worth or value as a human being.
Does this mean I have a mental illness?
No. ADHD is not a mental illness.
As mentioned above, ADHD is a neurodevelopmental difference. It is a difference in the structure and function of your brain as compared to most other brains. It’s a very specific difference, once we can study and measure and identify pretty clearly through various tests. Most importantly, ADHD’s status as a neurodevelopmental difference doesn’t change based on how you feel about having it.
Why do your feelings matter? Because mental illnesses are typically defined as conditions that cause “clinically significant distress” to the person who has them.
In fact, this is how psychiatrists and psychologists draw the line between a “personal quirk” and a “mental illness.” If the person isn’t distressed by the symptom, they aren’t likely to be diagnosed with a mental illness. The “illness” part happens when the symptom or quirk starts to interfere with your daily life, even when you don’t want it to.
ADHD can certainly feel like a mental illness, especially if it’s not treated. After all, if you could sit still or concentrate on demand, you probably wouldn’t be looking for answers about why you can’t do that. But even when your distress is managed – usually by managing symptoms – your brain structure will still be different in ADHD’s unique ways. You will still have ADHD; you’ll just have managed ADHD.
Untreated ADHD can also cause or contribute to a number of other mental and emotional conditions, like depression and anxiety. Some of the symptoms of ADHD, like the inability to concentrate or to get started on a task even when you want to do it, also appear in conditions like PTSD for some people. Some people find that they can’t get a reliable ADHD diagnosis until they deal with other conditions first.
What if the doctors want to put me on medication? Aren’t ADHD meds basically meth?
First: Whether or not you try medication for ADHD, and which medications you try, is between you and your doctor. Your doctor will not follow you around and shove pills down your throat.
That said, ADHD meds come in two basic forms: stimulant and non-stimulant. Stimulant medications for ADHD are generally Schedule II controlled substances, which means they’re subject to a lot of rules and restrictions in the United States. (Medications on Schedule II are understood to be addictive, but also to have useful medical properties, so they’re not banned for all uses like those on Schedule I.)
ADHD meds and methampetamine are both potentially addictive stimulants, but the similarity ends there. Meth is a Schedule I substance with no recognized medical value. It is also notorious for doing significant damage to the human body and brain.
In addition, the risks of addiction to stimulant medications appear to be somewhat lower for ADHDers than for people without ADHD. They’re not zero, but if you have ADHD, your chances of being able to use a stimulant medication without developing an addiction are higher.
Stimulant medications treat ADHD, generally speaking, by increasing the amount of dopamine circulating in key areas of the brain, like the anterior cingulate cortex – the part responsible for impulse control, focus, planning, and response to reward and punishment. (Sound familiar?) By increasing dopamine circulation, the meds help ensure that these parts of the brain have the dopamine they need to function – but not more.
Extra dopamine, beyond what your brain needs to function, is what causes the feeling of a drug “high.” It also leads to greater tolerance and dependence over time, as your brain adjusts to the extra dopamine.
But since ADHDers don’t get extra dopamine from stimulant meds, their brains never make the adjustments that result in tolerance and dependence. Their brains just work like they’re supposed to, because they finally have the right amount of fuel.
Non-stimulant meds for ADHD are generally not controlled substances, but they also tend to be less effective for many people. The only way to know if any ADHD medication will work for you is to try it yourself under your doctor’s supervision.
Am I stupid? Am I retarded? Am I a freak? Does this mean my life is over?
No, no, no (or maybe but in the good way), and only if you let it.
Sadly, these are the questions about new ADHD diagnoses that I field the most. As the choice of derogatory language indicates, they’re very often asked by people who still have a very particular idea of what is “good” or “bad” in the human brain – and they fear ending up on the “bad” side of that fence.
However, ADHD doesn’t mean you are an [insert slur here], because no insult or slur can capture who any person really is. That’s where their power to hurt comes from – the fact that they reduce a glorious complex living human to a single point of derision or hate.
ADHD means nothing about who you are as a person. It means that you think differently and respond to some stimuli differently from most people. It means that ways to accommodate your style of thinking and approach to the world probably weren’t ever taught to you by your parents or in school.
But, if you’ve gone undiagnosed for many years or decades, you’ve probably heard a lot of messages that feed the idea that there’s something irredeemably “wrong” with you. A lot of people with ADHD – even those who were diagnosed and treated as kids – grew up hearing things like “You just need to focus more,” “I can’t believe you’re so lazy,” and “If you’re so smart, how are you so dumb?”
When you first get an official diagnosis and start treatment, you may also benefit from talking to a therapist about your childhood and life pre-diagnosis. An ADHD diagnosis, especially for older teens and adults, tends to stir up a lot of painful memories of being punished or harassed for things that you didn’t know were ADHD symptoms at the time. It’s important to be kind to yourself and to take those stirred-up pains, if any, seriously.
Finally: ADHD doesn’t mean you’re doomed to a life of failure. In fact, getting ADHD properly diagnosed and treated can help you unlock levels of success you always wanted to reach but never could figure out how. Many highly successful people have ADHD; some even use their ADHD to their advantage.
If an Internet quiz told you you have ADHD, you might have ADHD – or you might not. It’s up to you to decide what to do next. ADHD or no ADHD, you remain in charge of your own life.