Neurodiversity

Frictions

“Nothing about us without us.” That’s a guiding principle in the disability-rights movement. It applies to the mental-health justice and recovery movements as well because mental-health issues are often disabilities for those of us who live with them—sometimes because they are truly disabling and sometimes because our cultures disable us, our communities disable us, and those around us disable us because they don’t understand us (or try), don’t include us (or try), discriminate against us (often because of unexamined or dismissed bias), and subject us to their versions of who we are, which happens daily through language and actions and the way real and conceptual spaces are structured.

I bought a clicker, one of those old-fashioned ones that employees at the academic library where I worked in college used to track how many people came in each day. I’m going to use it for two weeks and track how many times I encounter instances of sanism, both in real life and on social media. I started doing something similar last week by making ticks on a piece of paper. But I like the idea of using a clicker in part because it’s an object I can hear and feel as I operate it, in part because it fits in my hand, and in part because it’s a bright color. I have the kind of sensory processing that appreciates those things. The clicker also feels more formal and official, and I can use it even when I don’t have a pen and paper with me, which makes it more practical. I may include notes about each instance, including the context, date, and time.

OK, I actually bought six clickers in an array of colors because they came in a set, but that’s beside the point. You may think that’s too many clickers. I don’t. I’m mildly tachycardic right now just thinking about their arrival. There’s a black one and a green one and a pink one and a red one and a white one and a yellow one. I’m actually trying to humanize myself in this paragraph and the last one because I made some big assertions in my opening paragraph, the kind that make people (in this case me) unlikable mostly because they fall under the information you didn’t ask for that I think you should know category but also because they may apply to you or those you know rather than some far-off “they” that we can all join in both hating and distancing ourselves from together.

“Nothing about us without us.” I take this principle seriously. It’s like no taxation without representation, only it’s like no characterization, no proclamations based on misinformation, no policy decisions, no representations in the arts and the media, no casual or formal conversations, no application of diagnostic labels especially when used in a pejorative manner, and no limited or completely erroneous lay insights without our representation. That means we are centralized, not marginalized. We are present, not absent. We are heard, not talked over, not silenced, not discounted. It means if we say there’s an issue, you listen. You don’t shift in your seat or put up a wall or fail to respond or shift blame to us. 

I’m no longer entering rooms where there are frictions only I appear to see and concerns only I appear to discern, one thousand frictions that are invisible to those who are not queer or neuroatypical or living with trauma or serious mental-health issues. That doesn’t mean those frictions don’t exist. It just means they may not exist for you, and if that’s the case, I’m happy for you. I’m glad a room is just a room is just a room. But your inability to see what others see, feel, and experience in those rooms—your failure to cultivate literacy about the things those who are oppressed and marginalized have to see in order to survive every day—is part of why rooms continue to not be the same rooms for you that they are for others.

These rooms are exhausting. Click click click (click click). If in addition to instances of sanism, I count instances of trans erasure (click), ableism (click), neurotypical bias (click), discounting of women and those who are female-bodied (click), jokes about diversity (or the lack thereof) in a space (click), and more,* there will be no end to the clicking in too many rooms, even rooms full of poets.

It’s impossible to know which rooms will be full of frictions. I’m trying to figure out what clues I can look for ahead of time and to develop a matrix I can use so I know when to call any given room quits. I no longer believe I can change hearts and minds with my presence, my words, or my work. I feel like, more than ever, I’m in a box called “crazy” and that terrifies people, no matter how I live, what I accomplish, how I treat others, or how wonderful folks think I am before they learn I have a DSM diagnostic label or that I’m queer or that I’m neuroatypical in numerous ways. I’ve seen that semipermeable membrane more times than I can count: the one where inclusion becomes exclusion and being part of becomes being removed from.

I feel like my attempts to address frictions only lead to more frictions, many of them in the form of irritation, denial, resentment, and even fear and disgust. But I will do what I can until I realize I can’t do any more. Then I’ll leave before I accept my own erasure and even start erasing myself. I can’t abide that or any other form of complicity.

I’ve mainly seen this level of friction in Utah. At least in other places, my experience has been that I become more human when I talk, when I write, when I take part in things. Of course, I was largely in the closet about my bipolar until two years ago. That may be part of why people accepted me as a human being and not as an amalgam of their stereotypes, biases, and misunderstandings about bipolar. Who knows what those places are like now, in this new world that has us all doing the work of marginalizing and dehumanizing others on some level.

The rooms with poets are the ones I must approach with care above all the others because I need to believe in poets, even if that belief is misguided. I’m not ready to let go of that yet. I know better. I think I know better. I want to know better but, more than that, I want to be wrong. I want to believe in poets the way some people want to believe in God. It’s like that for me.

I also can’t help but see something else in those rooms, wherever they’re located: a kind of arts-driven traveling medicine show meets multilevel marketing network. It’s not quite either of those things, but it does feel like a system that created itself and now uses its existence as a way of validating itself, one that enriches the few and relies on the many, and one that’s unhinged from actual oversight or governance by the institutions many of these poets actually work or once worked for, which means those institutions will not act based on anything that happens, up to and including sexual assault, in or near those rooms. It’s hard not to see it like that, especially after some of my personal experiences in such rooms, which makes it even harder to find spaces that are safe and poets who are doing good work in those spaces.

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* I’m just listing ones I’ve encountered recently.

Updated Immunotypical Privilege List

In 2014, I wrote a piece titled “44 Signs of Immunotypical Privilege” shortly after my diagnosis with common variable immunodeficiency. It’s a compilation of my experiences and those articulated by others living with various forms of primary immunodeficiency. The Irish Primary Immunodeficiencies Association published it on their site and had plans to make it into a brochure, though I’m not sure the brochure ever materialized.

My piece was inspired by Peggy McIntosh’s famous essay, “White Privilege: Unpacking the Invisible Knapsack,” written in 1998. I later updated my piece when “COVID” and “monkeypox” became household names. It’s now titled “46 Signs of Immunotypical Privilege.”

I plan to write a new piece titled “44 Signs of Neurotypical Privilege in the Poetry Community.” It won’t make people feel comfortable. That’s not the point. The point is that it needs to be written, and it matters, and I can’t see how to not do so after what amounts to an executive extermination order against those with mental-health issues. Ask Brian Kilmeade. He sees that order for exactly what it hopes to be and understands exactly what it allows those who hate us through and through to say, including my fellow Utahns.

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46 SIGNS OF IMMUNOTYPICAL PRIVILEGE

Every day, as an immunotypical person—

  1. I can go out when COVID is circulating without being in a high-risk category that makes me much more likely to be hospitalized, die, or develop long COVID.

  2. I can go out during flu season without worrying too much about how serious contracting the flu could be.

  3. I can see the exponential rise in monkeypox cases and not worry that I might be especially vulnerable to the disease.

  4. I know my immune system will respond to flu and COVID vaccines. I might even skip vaccination altogether without serious health consequences. Attenuated, live vaccines such as the one for monkeypox are safe for me because my immune system works properly.

  5. I can read about measles resurgences without feeling alarmed. After all, the measles vaccine isn’t contraindicated for me, and I know my body has mounted an immune response to the disease.

  6. I can touch door handles and other surfaces in public without much concern.

  7. If I get a slight cough, I don’t have to worry about it turning into bronchitis or pneumonia.

  8. My health status never goes from relatively normal to life-threatening in a matter of hours.

  9. When I take antibiotics, they work quickly, and I only need one round.

  10. I haven’t been on antibiotics dozens or even hundreds of times over the course of my life.

  11. I’ve never been on prophylactic antibiotic therapy. I don’t even know what that is.

  12. I don’t have to routinely take medicines such as prednisone that weaken my bones and put me at greater risk for osteopenia and osteoporosis.

  13. I don’t have to wonder what comorbidity might be lurking just around the corner and if it will be a noninfectious condition, a malignancy, or an autoimmune disorder.

  14. I’ve never heard the phrase “immune dysregulation” and don’t have to concern myself with what that might mean.

  15. For me, boosting immunity means popping more vitamin C or Airborne. I have no idea what immunoglobulin is or why it’s essential to the human immune system.

  16. When I attempt to eat out, I don’t have to think too much about how long items are left on buffet tables or how well food is washed and prepped by food handlers.

  17. When I’m out in public, I don’t have to worry when people cough into their hands or without covering their mouths.

  18. I can be sure that, when I go to classes, movies or restaurants, I’ll find a place to sit in which I’m free from issues that exacerbate my breathing problems, such as perfumes, fragrances, and cigarette smoke.

  19. I know I won’t have to pass on social activities because they would put my health at risk.

  20. I know family gatherings won’t pose a threat to my health, even if young, potentially unvaccinated, children are present.

  21. If someone I love is in the hospital, I don’t have to think about when I can visit, how long I can stay, or other health considerations. I can fully focus on that person and their health needs.

  22. I can attend school, have a full-time job, raise a family, and engage in recreational activities without also having to manage the many conditions that would affect me if my immune system didn’t function properly.

  23. I can leave meetings, classes, and conversations and not feel excluded, fearful, attacked, isolated, outnumbered, unheard, held at a distance, stereotyped, or feared because of my immune system.

  24. If I pick up a magazine or watch television, I’ll see images that represent me and my experience of my health.

  25. I never have to speak on behalf of all those who are immunotypical. My thoughts about my immune system can be my own with no need for political alliance relative to my immune function.

  26. My actual and potential contributions to society will not be challenged because of my immune system.

  27. I can go for months without thinking about or being spoken to about my immunotypicality.
  28. I’m not identified by my immunotypicality.

  29. I won’t lose friends who can’t relate to what I’m going through, who think I’m exaggerating about my symptoms, or who just can’t deal with having a friend with my health status.

  30. I know I won’t be discriminated against by employers who neither understand my condition nor have the desire to provide a reasonable accommodation, despite the legal requirement that they do so.

  31. I don’t have to be afraid that, when I talk with others about my health, they will suggest unsolicited supplements, dietary approaches or exercise programs.

  32. I won’t be told by friends, family, and even uninformed members of the medical community that my condition is really just a psychological problem such as anxiety or depression.

  33. I know nobody looks at me and makes assumptions about why I appear to be ill (or well), or why I am too thin (or too heavy), or why I am not fit (or manage to stay fit despite my illness), or why I do (or do not) eat what I do (or do not) eat.

  34. I don’t have to explain why I have a lingering cough, why I might sometimes need to wear a mask in public, or why situations and settings that are safe for others may not be safe for me.

  35. Because I have never had to wear a mask in public, I have never been asked to leave a public place because the manager or owner of the establishment believes I am putting others at risk, when in fact the mask is to protect me from the pathogens others carry.

  36. I don’t have primary immunodeficiency, so I never encounter people who make the assumption that, despite the condition being genetic, I somehow brought it on myself through my diet or lifestyle.

  37. People aren’t embarrassed to be seen with me because of my health status.

  38. When I talk about my health, I can be certain that friends, family, co-workers, and others won’t become uncomfortable and change the subject.

  39. My partner doesn’t suffer from undue stress and hardship because they’re my primary or only caretaker.

  40. Nobody tells me I should feel lucky to have primary immunodeficiency because it means I don’t have to work or accomplish anything during my lifetime.

  41. My doctors have seen a lot of patients who are immunotypical. This means I’m not put in the position of having to educate them about my immunotypicality, since they’re already familiar with it.

  42. When I present in a health crisis at the emergency room, I’m given prompt medical treatment, not told I’m merely having a panic attack.

  43. I’ve never had the experience of being misdiagnosed over and over again throughout my life.

  44. I don’t have old misdiagnoses in my medical record that can’t be removed without a great deal of time and effort on my part.

  45. I don’t have to deal with the financial burden of expensive, ongoing medical care and therapy.

  46. I don’t have to face insurance companies that must review coverage for my life-saving therapy before that treatment is approved; that sometimes make patients go off their therapy for months in order for those patients to prove they still have the condition; and that sometimes deny therapy because they don’t feel the patient is ill enough to warrant it, despite documentation to the contrary in the patient’s file.

Frictions

I’m thinking about the kinds of frictions marginalized folks experience in the literary community, namely when participating or attempting to participate in things like events, readings, residencies, and literary programs. It occurs to me that things other folks might miss or not understand or not be able to “see” can be experienced very differently by those in marginalized groups and can make spaces unwelcoming, othering, invalidating, and even hostile.

One example from my recent personal experience is the trans erasure associated with someone dropping the letter “T” from the acronym LGBTQ+ and instead saying “LGBQ.” That act changed the way I see the university where I planned to study writing and creative writing at the graduate level because the person who dropped the “T” is affiliated with the institution. Along with other frictions I’ve experienced, I no longer feel welcome at that school. Someone else might not notice an omission like that, or they may think it’s no big deal, but as someone who’s queer, that erasure is both obvious and painful.

I’m interested in the kinds of frictions others have experienced and the disproportionate ways frictions tend to aggregate, not only within one type of marginalization but across various forms of marginalization.

Realms Beautiful and Terrifying

Awake is my least favorite word when I don’t want to be. Our water purifier started making a high-pitched noise a few minutes ago, a steady ewwww like a piece of industrial equipment humming in the distance, at once piercingly but almost inaudibly. I unplugged it, but the sound made me hyperfocused on my tinnitus, so now I’m just a body that screeches and won’t stop.

I took some sleep medicine, something I rarely do. As I wait for it to kick in, night thoughts do their dark work. I don’t ruminate about minor issues like some folks. My waking nightmares are about my father, my family, Oklahoma, me, the ways in which I’ve been purged, and the things I feel like I need to purge that find me at night when I’m closer to my personal unconscious and the collective unconscious than I am during the day.

I had an unthinkable thought that was immediately ushered by my circuitry to every central and distal part of my body. My feet. My hands. My tongue. My scalp. My shoulders. My gut.

What if, I thought. What if it’s true?

This particular thought is a hard one to put on a shelf until I can process it in the light of day. The “what if” feels less like a possibility than a haunting, a visitation declaring what the world is and who I am in it. I don’t like either. I hope I’m seeing an old lady that’s really an owl, like in one of those optical illusions.

The unconscious realms are beautiful and terrifying. I’d prefer a different ratio of beauty to terror right now. I’d rather experience both while asleep, not while sitting in bed awake, my warm dog pressed up against my calf doing what I can’t do: slumber. I feel her breath on my foot. I feel her chest rise and fall. I feel how soft and small and fragile she is. I feel how much I love her and how much I don’t want to be a monster in a monstrous world.

Awake is my least favorite word when I don’t want to be. Terror is my second least favorite. Monster is my third least favorite. To be an awake, terrified monster inside of what is monstrous is nothing I’d wish on anyone.

The Brain

When I was a senior in high school in Oklahoma, a local bank sent toys out to folks in the community as a promotion. The toys didn’t come with instructions. To get them, you had to visit the bank, where they would try to get your business.

The toy was called The Brain. It was a gorgeous thing with a black base, moveable black wedges attached to black pins and transparent layers of clear plastic stacked on top of each other. Each layer had different shapes cut into it. Together, they could either lock or unlock each pin. The goal was to figure out how to move all the pins out and then back in.

It wasn’t easy, but I cracked the code. That’s not what’s important, though. What matters about this toy is that it was the first time I was able to wire up my brain and my muscles and my whole being. I not only cracked the code, I learned how to solve the puzzle in record time. My fingers moved without conscious thought or, rather, so fast my thinking couldn’t get in the way of the movement.

There was a tactile component to the game that was central to the experience. The moving pins clanked like a computer keyboard. To this day, I still look for keyboards that sound like The Brain. Tick-tick-tick-tick-tick-tick-tick-tick. Tick-tick-tick-tick-tick-tick-tick-tick. It wasn’t just one sound, either. The components in each layer of the toy rattled slightly alongside the ticking of the main pins. In the right hands, that toy was a tiny, quivering percussion instrument that sounded like ice cubes rattling in a glass. Its real calling wasn’t being a toy sent out to promote banks. It was being an instrument in an avant orchestra that only performs graphic scores.

The Brain made such an impression on me that, the other day, I noticed I was re-creating its rhythm and sound while taking my vitamins. Tick-tick-tick-tick-tick-tick-tick-tick. I have a complicated system for retrieving a vitamin bottle, tick, taking a vitamin while retrieving the next bottle, tick-tick, and so forth while also arranging the bottles, tick-tick-tick, in a particular way on the counter and then placing them back on the shelves, tick-tick, following another pattern once I’ve taken them all.

The Brain taught me how to be a better flutist, how to be a writer—how to live in language at all for that matter—and how to process and store information with exceptional efficiency. Runs of notes became compact units that could be compressed in my memory and expanded when I needed to retrieve them. Tick-tick-tick-tick-tick-tick-tick-tick.

Language became something I could enter into because I could type at least as fast as my thoughts. Tick-tick-tick-tick-tick-tick-tick-tick.

Memory in general became something I could store in chunks without taking the time to think the words I was thinking. Tick-tick-tick-tick-tick-tick-tick-tick.

Notice there are eight ticks, one for every pin. The Brain taught me to compress language, music, and thought in packets based in octals, like a computer. The Brain is actually billed as a computer. The side of the box reads, “Can you out-think the computer?” But that’s not what it was about for me. It was about streamlining my thoughts, perfecting my movements, bringing my whole self into unity, into the present, into being-ness, and not having to slow down or get mired in the difficulty of whatever I was performing or creating.

This was profound, and it was my way of making my dyslexia work for me rather than against me. It was an assistive technology that unlocked me as a person. It was an extension of me that led me back into me in ways that had been inaccessible before The Brain. It was a teacher. It was a sage. I will forever be grateful to the bank marketing team who mailed The Brain to my home and to the company that created and sold it.

Someone stole The Brain from me in college. I think it was my friend Terry Holsti. He played the trumpet and had a bag full of teeth and hair and giggled all the time and had a different moral compass from most people. He was fascinated by The Brain. He always asked me to give it to him. I hope it’s making him as happy as it made me. I really do.

O The Brain! It’s smart. It’s beautiful. It’s mysterious. It’s a see-hear-touch explosion waiting to happen with the patience of a lama. And it’s marked sold because it’s on the way to my house in Utah. I shall not navigate this place alone. I shall have The Brain by my side. Together, we will gleefully tick-tick-tick-tick-tick-tick-tick-tick who live in this area instead of allowing them to tick-tick-tick-tick-tick-tick-tick-tick run us out of here.

Wet Hair

Good morning. What are you all doing today that’s poetry-related or not at all poetry-related? I have some big poetry plans but first I need to work up the will to wash my hair.

Here’s the impediment: I have a strong aversion to wet hair, including loose strands of wet hair that cling to my hands and arms and legs, wet hair matting drains, the feeling of wet hair as it’s being styled, wet hair stuck in brushes, wet hair on the floor, and so forth.

I just got chills, the bad kind, as I wrote about wet hair. I hate the way it looks. I hate the way it’s so soppy and formless. I hate the way it tangles. I hate the way it drips. I hate parting it. I hate smearing hair products around on it. I hate scrunching it. I hate having to coddle it by wrapping it in a towel until it’s dry enough to allow me to dry it.

I hate the towel. I hate the way the towel throws me off balance like Lucy in that one episode where she has that giant headdress on and can’t get down the stairs and everyone is laughing but she’s mortified because all she wants is to get down those stairs gracefully. I mean, it really is a funny scene. I’m watching it now.

My life with my wet hair is never funny. If I could inject humor into it, things might be different. Maybe if I had some Vitameatavegimen I’d be able to deal with my wet hair or I would stop washing my hair altogether and just lie around writing trippy poetry while my hair grows greasier and greasier, which is also a state I don’t like in hair, but more Vitameatavegimen would probably cure me of that aversion, too.

This is part of my sensory processing differences, which make me love the majority of sensory experiences but detest a few specific experiences, like looking at, touching, cleaning up, and thinking about wet hair. Or greasy air. I like clean, dry hair. I love to touch it. I love the way the strands lie together smooth as bristles in a Purdy paint brush. I love the clean lines, the tapered ends, the glimmering color in each strand, the way it feels against my face. I love the expressiveness of dry hair. I love looking at photos of dry hair. I also love beard hair and have an entire Pinterest board devoted to beards, but that’s beyond the scope of this discussion.

I just need to wash my hair, then I can focus on poetry.

And no. I’m not going to shave my head to address the issue. (I have both the wrong face and the wrong head for that.) I won’t wear a wig, either. (They’re too hot, and I don’t like the way wig hair feels, even if it’s human hair. I hate how heavy they are and how they feel against the scalp and how the lace has to be trimmed, and the glue that has to be used, and the powder that has to be applied to the part, and the very real possibility that one would become dislodged in the wind. I live in extremely windy areas. Wigs are a no-go.)

So, yeah. What are y’all up to today?

The Subtle Ordering of Words

One thing that was interesting about the first piece she read was the subtle ordering of the words and how each word relates back to the other words even though the whole piece is rather sparse.

My husband just walked through the front door and said that to me. It’s what he was thinking about on his morning walk with our dog, Lexi—last night’s poetry reading by Mary Ruefle. He didn’t even say Mary Ruefle or Ruefle to identify her. He just said her, like he was saying aloud the last part of something he’d already started saying to himself during the walk.

My husband doesn’t write poetry or read poetry or even like poets much because of what happened to me in 2009. He’s still not sure exceptions to the rule in poetry are actually exceptions. He’s not sure there are actually any rules at all where behavior toward female and female-appearing poets is concerned.

I’ve tried to tell him the exceptions are exceptions and that there are ways to stay safe within the poetry community. I’m navigating all of that myself. My initial response was to leave poetry and never write again. But that is not living. I managed to eek along for seven years. I took up birding. I took up weaving. I love birds, and I love fiber, but I also love words. I loved words first—well, second right after classical music—just as soon as I was able to navigate language, which wasn’t easy because I’m dyslexic.

What a joy I found language to be. An absolute delight. A place to play, work, imagine, create, build, live, linger. I was thrilled to see that Ruefle’s reading had an effect on my husband, that her reading helped loosen language up for him. He’s a software engineer who doesn’t have a lot of flexibility with words and finds writing and speech tiresome. He’s also dyslexic but went in a different way in his life: away from language rather than toward it. Or, rather, toward a completely different type of communication, the many languages of code.

We have a safe word for poetry readings and other outings. It’s a phrase, actually. If either of us says the phrase, that means we’ve seen or sensed some kind of red flag, and we need to leave the situation. After what happened last year with the couple at Snow Canyon State Park in Utah, we’ve realized we can never be too careful. We’re especially careful around poets.

I’m glad the safe words weren’t what was rattling around in my husband’s head this morning. Mary Ruefle doesn’t know it, but she and the entire audience at the Poetry Center helped my husband feel like I’m safe, or at least safer, in poetry these days. And he feels safer, too. Now, he can play inside poems like Ruefle’s and find new things to love about language—within those sparse words that do so much vital work.

Yesterday, I was discriminated against when I disclosed my dyslexia—a documented, ADA-protected disability—to my coworkers. I’d been struggling all day to do my work but was unable to do so because of a modifiable issue in my immediate workspace. The employee I share a cubicle with was gathering with others. They were engaging in loud, boisterous conversations, including those that did not pertain to her work or to work at all. This went on for hours.

Eventually, when I was trying to send an email but was unable to accurately type a single sentence because of the noise and distraction in my immediate vicinity, I decided to share my diagnosis with the folks who were gathered in my space. I thought explaining how noise affects my ability to read and write would help them understand and be supportive. Instead, I was met with dismissiveness, sarcasm, and a refusal to be supportive. When I said, “I’m dyslexic,” one employee threw a hand in the air and sarcastically replied “Congratulations?” then staring me down as if I’d done something inappropriate. It was the equivalent of saying something akin to, What do you want, a medal?

I can’t imagine anyone responding that way if another documented, ADA-protected disability had been disclosed, such as a physical disability for which someone was requesting a ramp when only stairs had been provided. The response was unfathomable and unacceptable. I realized then that I will never be able to advocate for myself in that workplace or to feel a sense of safety, inclusion, and belonging there.

Immediately after this incident, I attended a one-on-one training that was not accessible. When I disclosed my disability to the instructor:

1. did not treat it as a disability,

2. made comments that were not acceptable and would never have been made if it were a different type of disability,

3. continued the training despite my having explained why it wasn’t working for me without modification to the way it was taught and what was being asked of me.

One comment the trainer made when I told him I needed my own keyboard and mouse—which are assistive technologies for me—if he wanted me to do extensive typing as part of the training, was that “everybody” has trouble with that keyboard and mouse. Even after I was clear that dyslexia is a disability, that it’s protected under the ADA, and that it’s not the same situation others without a learning disability may have with the keyboard, he continued to make that statement. It was minimizing, dismissive, and uninformed.

Again, if this were another form of disability, that would not have happened. His approach was no different from telling someone in a wheelchair who can’t use the stairs that everybody has issues with the stairs, then continuing to expect the employee to scale the stairs somehow without any other alternative.

I cannot take on the responsibility that job requires within a culture that is discriminatory in general and toward me in particular. Even with an accommodation request, which I’ve never had to make before in my career, the culture will not change quickly enough for this to be a tenable workplace.

I will not continue to subject myself to comments like the ones those employees made, and I shouldn’t have to. I invested a great deal in this position financially, emotionally, and otherwise. I turned down one offer and terminated the interview process with another potential employer to be at UA. I’m not going to be able to see my brother-in-law before he dies because I needed to be present at work. I started work two days after being in the emergency room for a serious, chronic medical condition that’s affecting my heart. I did all of that because I thought UA and UA Libraries lived their mission and would be safe places where I could learn, work, grow, thrive, and give back in spades to AIS, UA Libraries, and the University of Arizona as a whole.

In addition to the issues I’ve recounted above, employees use ableist, sanist, and otherwise dehumanizing language regularly. I was subjected to instances of discriminatory language, behavior, and attitudes multiple times a day. As someone who was supposed to be helping to shape the culture there and ensure the library is a trauma-informed space and community, I didn’t have the ability to effect change because I wasn’t empowered to do so. That was clear from day one. I was literally told by a high-level leader to just keep taking notes about what was happening. That’s right. Discrimination is occurring. Ableism and sanism are occurring. But all I could do was take notes that I kept to myself. Until when. When would something be done?

The reality is that I am a queer, female, trauma survivor who thrives despite having multiple disabilities. Only some of my identities and statuses are currently being protected at UA Libraries. This queer-positive environment is sorely lacking in inclusion in other areas. It’s always the disabled, the disenfranchised, and poor, the silenced, the struggling, and the utterly destroyed among us who continue to be harmed by people’s dogged adherence to bigotry, as if it has to be funneled somewhere rather than being eradicated entirely.

Can’t be racist anymore? Be ableist or sanist! Can’t be sexist anymore? Be ableist or sanist! Can’t be transphobic anymore? Well, it’s your lucky day. We’ve got some fancy schmancy ableism and sanism right here for the taking!!! Step right up! We’re running a two-for-one sanism sale! Buy one ableism, get a sanism for free!

But here’s the thing: Where we discriminate against one, we discriminate against all. Since this country was founded, ableism and sanism have been part of its fabric. And now, they appear to exist in order for bigots to express their generalized bigotry in the only way that’s currently palatable, which is by attacking human beings based on their disabilities.

Ableism and sanism affect the most vulnerable folks in our communities. We need to do better by them. All of us. And that includes the people working in our academic libraries.

I expected equal protection across statuses, but ableism and sanism appear to be endemic at UA Libraries. It’s unfortunate. It’s actually devastating.

Some acts of bravery require resignation. My act of bravery this morning was to resign.

P.S. On my way out yesterday, I saw the bumper sticker on an employee’s car. It read, Ask me about my lobotomy. Fuck that noise.

Two Sleeps

Before the Industrial Revolution, people slept in two shifts. The first was from early evening until sometime in the middle of the night. The second was from early morning until it was time to get up and start the day’s work. The waking period in the middle of the night wasn’t just for reading or sitting by the fire. People played cards, canoodled, had little get-togethers, and more. It was dark and cool and simply a good time to be awake. A romantic time. A playful time. A productive time.

In 2008, when I had one of my bouts of thyrotoxicosis—which made sleep difficult and resulted in severe sleep anxiety—a therapist told me about two-sleeps. She could see my sleep patterns falling into that rhythm and encouraged me to embrace that rather than fighting it. I had charts and graphs and other excessively detailed stuff documenting my personal sleep woes because that’s how I roll. It was a lot, the way my personal wardrobe database, which I maintained for six years, was a lot. (I can be a lot or, as I like to say a lot a lot—think quirky, colorful, dysfunctional.)

Hold up, the therapist said. Maybe, just maybe, instead of being hypervigilant about your sleep, you could try this approach instead. Hers was for sure the better plan. It was hard to let go of my recordkeeping and data management, but I did it at her urging.

The change in perspective and approach got me through those long months until my thyroid function returned to normal. I should note that thyrotoxicosis isn’t like hyperthyroidism in that you can’t treat it. You just have to wait it out. The whole process from thyrotoxicosis (or thyroid storm) to hypothyroidism to a return to a euthyroid state takes about a year.

A long damned year that’s difficult, creatively productive, and hard on a marriage, or at least has been hard on my marriage. It’s not easy to live with someone who has a snack-and-book midden stashed in the bed because they need to eat constantly and must always have reading material ready for those inevitable jolts from sleep. And also a slew of notepads and a handheld recording device so flashes of brilliance can be documented, such as aphorisms that float in on the ether and strange dreams that can’t not be cast in stone or at least scrawled in pencil in feverish, sloppy detail. (Pencil because, while graphite is an inferior writing material, I have a no ink-in-the-bed rule, as should everyone. We have sheets to think about, folks. We don’t need to add fighting ink stains to our list of daily tasks, especially not when we’re thyrotoxic.)

It’s not easy to live with someone who’s in fight or flight for the better part of a year, edgy and jumping at every little sound, balled up at times saying I can’t take it when will I feel normal again, whose OMing her way through moment after excruciating moment, who asks her mother-in-law in Iowa to have a bag packed in case she needs to come take care of her when she’s thirty-six years old and her mother-in-law has better things to do like tending to her gorgeous, gazeboed yard and going to church and keeping her husband from wandering into the back of the garage never to be seen again because he’s finally going to put that classic car together, the one that’s been a tangle of pieces and parts strewn about the property for four decades. In short, someone who’s devolved into a twitchy little miscreant. It wasn’t easy on Jon. I wasn’t easy on Jon. But two-sleeps made a big difference.

I still approach my sleep this way if I wake up in the middle of the night. It’s a two-sleep night, I think. Rather than toss and turn in bed, I get up and do what I do, which is read and write and, sometimes, snack. Tonight, I’m up with GI distress and heartburn because of unfortunate but yummy birthday dinner choices yesterday evening. I came home and crashed, accidentally, at 8:40 p.m. and woke a few minutes ago bloated and nauseated, like a puffer fish that didn’t mean to puff and can’t unpuff and whose innards are on fire.

Is this a good time to write? Who knows. Will I produce anything of value during these waking hours? Based on this journal entry, it doesn’t seem like I will. I just know it’s not a good time to be horizontal. It is a good time to take Pepto Bismol and be vertical. So that’s what I’m doing until my second sleep begins. (Technically, since I’m sitting down, I’m vertical then horizontal then vertical again.)

Metadata paralysis is a real phenomenon, and folks like me live the experience every day. If you see someone with obvious symptoms of metadata paralysis, let them know you care. Take interest in their metadata tree. Say things like, “Good work. What a lovely metadata tree you’re working on. So many branches. I can’t wait to see what it grows into.”

Part two of this essay will be redacted in its entirety because it’s boring. Why? It’s self-indulgent and not self-reflective. The metadata here is value: subset one, possesses; subset two, doesn’t possess.

I’m falling asleep sitting up. Hello, theta waves. Bring on the strange brilliance.

I get it. His name is Jack Tripper and he trips all the time as part of his physical comedy. He also trips out on what others are doing and saying, so he’s also a metaphorical tripper.

Quick on the draw isn’t something anyone’s ever called me with regard to understanding plays on words, but they did call me fast fingers in grade school because I learned to count like lightning on my hands during math drills as a workaround for my dyscalculia and working-memory deficits. I won those drills. Laugh away, children, laugh away. What the world needs is a dyscalculia superhero named Fast Fingers.

Dyscalculia is either part of dyslexia or it’s a separate but similar entity. It depends on what metadata you use, that is, how you organize the information pertaining to each phenomenon.

Dyscalculia. Dyscalculia. Dyscalculia. That looks funny. This calculia. Miss Calculia. That’s Ms. Calculia to you. Dana “Ms. Calculia” Martin. Now there’s a name. A Dana by any other name still can’t count to ten without using her fingers.

They gave me a free dessert because it was my birthday. That’s what happened with dinner. And also a plate of fried everything. That part wasn’t free. I paid for the plate of fried everything. My metadata here is dinner: subset one, fried everything; subset two, dessert.

I didn’t have to eat it. I wanted to eat it. Then I didn’t want to eat it but kept eating it. I’m trying hard to eat. I need to eat. My metadata here is health: subset one, presence; subset two, absence. Or is it life: subset one, congruous with; subset two, incongruous with?

My throat is getting dry. The Pepto Bismol is coagulating, if that’s the right word, near my uvula. One time, a big, hard thing traveled from my sinuses down into my throat. I choked on it for a while, then coughed it into a tissue, thereby saving my own life. It was fossilish and had ridges like the roof of a mouth. This incident (or shall I call it an *indecent*) happened in from of my mother-in-law. The metadata here is mother-in-law: subset one, what not to do in front of; subset two, what I did in front of. Additional metadata is bodies: subset one, amazing; subset two, strange.

As with bodies, also with minds: subset one, amazing; subset two, strange. Or is the main category bodymind: one thing, not two? As in, we mine the bodymind when we should be embodying it. As in, why is the bodying of the bodymind something we mind, whether it’s ours, yours or mine? As in, what’s mine is my bodymind and is not to be mined.

This is a real mindfield. Good night. I’m off for part two of my two-sleeps night. May our collective dreams break the bough, rattle the house, and set free a wee mouse who runs the mazes of our minds. Wouldn’t that be amazing.

Fight

From grade school forward, I was bullied, harassed, sexually assaulted, and raped by my classmates. The lesser infractions started when I was younger, with the exception of the CCSA I experienced at an older boy’s home where my mother had me go every day after school until she got off work. The more serious incidents occurred when I was an older student.

Things got much worse after my father died when I was thirteen. Most of my peers didn’t even know he was dead. His fatal heart attack occurred the Friday before spring break. My mother made me go to school the week after spring break ended. She didn’t like the way it would have looked for me to have taken any time off.

It was around that time that the orchestrated bullying began rather than the sporadic outbursts that had occurred earlier. It was a sport—I was a sport—for a growing group of students, even other students who were LGBTQ+, who were neuroatypical, who had serious health issues that made them the target of kids who didn’t like weakness, paleness, physical differences and the like, or who were scared, marginalized, and unpopular for other reasons. I was the most unpopular. I was everyone’s target and, for some, a ticket to greater inclusion and popularity if they could demonstrate a shared hatred of and derision for me.

In groups, my classmates would call me names, ridicule me, and more: in the school’s hallways, inside classrooms, on the bus. My neighbor across the street, a student I’d been friends with up until my father died, would even open her door and, alone or with her friends who were over, call me bitch or slut anytime she saw me in the yard or driveway.

What was I to them? Prude. A slut. Stupid. Ugly. A bitch. Slow. Retarded. Flat-chested. Boyish. Easy. Gay. (Only they didn’t use the word gay. They used words that were darker, words that catch in my throat to this day. I lived in terror of them finding evidence to back up that last claim. What would they say—what would they do—to me then?)

They were like plaque, those students, the way they gathered, the way they clumped up like something clogging an artery that would otherwise function properly. After my biology class, I’d go to my locker, which was just outside the classroom. It was a lower locker. JL, a tall, funny, wildly adored boy had the locker above mine. One day, he started ramming my face into his crotch and simulating oral sex, holding the back of my head, forcing it into his genital area over and over as he pretended to orgasm. I thought it was only going to happen once, that someone would stop it. A teacher. Other students. School officials. They didn’t. JL repeated the abuse anytime he caught me at my locker. It became a joke most of the students in that building participated in. They’d linger after class, stand in groups gawking, laughing, as he simulated rape.

Though this wasn’t my first experience with CCSA, it was my most public, on display right there in the bustling, glimmering hallway where the floor tile and walls were all paste white, chalk white, as white as the flour babies the girls in some kind of love and marriage class had to carry around to prove they’d one day be able to take care of a child.

I began leaving class early to go to my locker or lingering after the bell rang so I could switch my heavy books out after class had started. It worked for a while until JL caught on.

I went to the school counselor. She told me boys will be boys. The more I resisted what JL was doing, she said, the more he would do it. It was, in essence, my fault. What happened to me was *my* fault, not JL’s. The counselor didn’t do anything. I asked her if I could be assigned a different locker. She refused. I asked her if she could talk to him. She saw no need. JL continued to force my head into his crotch whenever he could.

I got a large backpack. I put all my books in it. The backpack was tremendously heavy, weighed down by my literature, chemistry, physics, biology, Latin, music, and other books. I’d managed to overcome my learning disabilities, which I’d been bullied for in grade school. I fought my way into language, into mathematics, into all the letters and numbers that confused and frustrated and bewildered me all through grade school and early middle school. I knew being smart was my only way out. Education was my way out. College was my way out.

I knew my classes were more important than anything. I didn’t want to end up like JW, who got pregnant and was never seen again. Or like MW, whose entire family disappeared overnight. Or like RY and KA and LL and LB, all of whom ended up addicted to drugs, some of whom were raped, and one of whom was gang raped. (I failed to avoid being raped, twice, but that’s another story.) I forced myself to learn how to read and do math with no help from anyone and without my learning disabilities being recognized. By junior high, I was in advanced classes. I wasn’t going to let JL or anyone hold me back. My backpack gave me the freedom to avoid my locker. My shoulders and back hurt from lugging it around, but at least I could be mobile and move away from any tangles of students forming in or between the school’s buildings, ready to attack me verbally, physically, sexually, or in some combination of the three.

Years later, I spoke with one of those classmates, a brilliant student named PD. She explained why she and the other students did what they did. You were unflappable, she said. No matter what we did, we could never get a response out of you. So they did more. And more. And more. It was a challenge.

They were trying to break me. They never broke me. I’m still not broken.

They didn’t know what kind of family I’d been born into, what I’d already survived in my own home. What I survived every day.

Unflappable. A challenge. The word is strong. The word is a survivor. The word is fierce. I was fierce, but the body and mind can’t take eighteen years of constant abuse from within the family, from within the school, from within the community, without repercussions. We aren’t designed to withstand that kind of treatment. But we are designed to heal. This is what healing looks like, believe it or not. Right now, it’s me at age fifty-one waking from a nightmare in which I’m a teenager being sexually assaulted poolside, writing this down, and processing these emotions and memories on my own terms all these years later, as I have for many years up until this point. It’s a Mobius strip, healing. It’s a process. There’s no clear beginning and no clear end.

It’s life. It’s the life I’ve had up to this point and the one I fight for every day. It’s the me I fight for, and the others I fight for, and the fight I continue for those I’ve known and loved who have fallen because they could no longer fight. My comrades. My kindreds. The ones who didn’t make it. It’s JW and RY and KA and LB and, most recently, KB. And it’s DG. Dana Guthrie. Dana Lynn Guthrie, the name I was born with, the name I got from my father and the parts of him that I still carry with me. He was a boy, too. Boys who’ll be boys. Men who’ll be men. Fathers who aren’t always fathers.

The birds are singing. Wake up. It’s time to wake up.

Yesterday, The Human Rights Campaign declared a state of emergency for LGBTQ+ people in the United States and released a guidebook that includes laws it deems discriminatory in each state, information about LGBTQ+ rights, and resources to help people relocate to states with stronger LGBTQ+ protections. Those who are LGBTQ+ are more likely to experience child sexual abuse, sexual assault, and rape. We can live with ongoing bullying, harassment, and discrimination all our lives, including during critical developmental years. We’re more likely to be stigmatized and marginalized, to receive less and poorer healthcare (including care that is neither trauma-informed nor LGBTQ-literate), and to receive inaccurate diagnostic labels when we seek mental health care—labels that are biased and don’t account for the relentless, systematic abuse we’ve faced and survived or that shift the blame for those experiences to us. Conversion therapy, which is legal in numerous states, may even be employed.