Praxis: A Writing Center Journal • Vol. 19, No. 1 (2022)
Seeing the Air: Neurodiversity and Writing Center Administration
Karen Moroski-Rigney
Michigan State University
moroskik@msu.edu
On recognition
In Jackie Grutsch McKinney’s Peripheral Visions for Writing Centers, she writes lines oft-echoed in Writing Center Scholarship ever since: “Thinking of our writing centers as cozy homes, insisting on them as such in our discourse and scholarship, can certainly make us feel good . . . [but one] problem [with that] is the fact that homes are culturally marked. If a writing center is a home, whose home is it? Mine? Yours? For whom is it comfortable?” (McKinney). McKinney’s pointed questions engage writing center scholarship’s engagement with intersectional identities: writing center scholars work to root out sexism (Grustch McKinney, Miley), racism (Grimm; Young; Condon; Garcia; Martinez; Williams; Cedillo), and homophobia (Denny; Dixon) from our programs and journals. We are a discipline of pedagogy (Bruffee) and practice (Ianetta; Fitzgerald). We are open-hearted and committed to power diffusion, to rhetorical listening (Ratcliffe; Elbow), to seeing the potential and power in underestimated or yet unrecognized places.
Recognition is an act of storying: it requires context, belief, arrangement. Whose stories do writing centers recognize—that is, dignify with arrival and welcome? What narratives do writing centers recognize as story, rather than as only antagonism or alignment? Neurodiverse people may not story their experience of themselves or of writing center work in linear or recognizable ways: what a neurotypical or abled mind minded folks might see as disengagement/refusal may instead be a yet-unrecognized practice of storying the self, and storying the center.
In this article, I will weave together stories and scholarship of neurodivergence—a topic largely undiscussed by writing center scholarship—wwith concepts of welcome and performative inclusion/belonging in writing center work. Narratives of disability in writing center work haunt the writing center texts –rarely discussed, and when discussed only in terms that can be encapsulated or solved. We can only arrive if we’ve already gone, so to speak—our stories aren’t engaged or listened to unless they can be solved. Solving is not recognizing.
As “writing centers may try to create welcoming spaces, but this sense of welcome is somewhat undone by the activities that occur in that space,” (Camarillo) neurodivergent members of the writing center community are regularly denied arrival. Programming, curriculum development, mentorship and consultation strategies, and actual employment expectations (for directors and consultants alike) neglect and/or do not research the realities faced by disabled members of the academy (Anderson; Olkin), and only through intentional reconstruction and welcome can we foster recognition of disability in writing centers, and recognition of the place writing centers and their work occupy in the ableist structure of the academy.
This article is both narrative and scholarship, moving forward and backward and in and out of time, jumping from memory to analysis, attempting to “crip”¹ the practice of writing an article while simultaneously engaging my reader in a form they (you) find comfortable. It won’t be a traditional traipse through the ivory tower. The narrative model of this essay was chosen in the spirit of transparency, and borne of my hope that if someone else sees themselves in the lines of this text that they will seek support. And, perhaps even more importantly, that they will receive it.
Now, I want to tell you a story.
***
Tiny, prismatic flecks. I sit on the cement steps of my back porch with my head feeling like a shrinking balloon. Glitter in the air. All colors. Every color. So tiny I can’t hold them still with my eyes. I try. They move, like they’re shimmering, or maybe dancing. Always moving. I can both see the flecks and see through them. I don’t understand how that can be. I’m seven years old. I’m wearing red sweatpants that irritate my ankles and have some orange mark on the knee. What was that from? I don’t remember. I poke the orange mark, and beneath it, my leg hurts. A bruise. I don’t remember. My dad is painting our cellar door. I can hear the radio inside the house and the birds in the trees and the wind and the sound of the paint brush, and I can smell the paint and the grass and the scent of sunshine’s heat itself beating burning shining spinning—and still, these tiny flecks everywhere. Everything is swirling together, like it always does, and I’m vaguely unmoored, like I always am. It’s hard to pick out any one thing to feel at a time. So I feel it all. The colors smell like sounds and the noise tastes like a color and it’s hard to focus.
“Can you see the air?” I ask Dad, abruptly. He looks up from his painting, tips his head. His dark brown hair falls across his eyes and he uses an inverted wrist to push it back.
“Like smoke? Or fog?” he asks, then suddenly with mild alarm, “Wait. Why? Do you see smoke? Where?” I sigh.
“No. Just the air. Can you see the air?”
He can’t, he says.
Nobody can, he says.
I think to myself that I’ve got to be describing this badly, since there the air is, plain as day, ten million colors dancing in the light and it’s everywhere I go (unlike smoke) and it’s in all weather (unlike fog). I try to explain what I can see, but words are failing. My brother, aged ten, walks by dressed in his tiny camouflage outfit and brandishing his toy shotgun. Playing soldier. I notice the way his mouth and nose twitch as he considers me. My eyes take him in: hairbrowngreenmouthcornernosetwitcheyeswooden.
My brother turns, looks at me, and says “You’re weird.”
I decide to ask around. Mom can’t see the air either (Heartbreak! She is usually who understands me); my neighbor Veronica can’t see it either; my friends at school are similarly bewildered by my insistent question: Can’t you see the air? Eventually, I decide that one of two things is happening: I am either the worst possible descriptor of my own human life and am not getting my meaning across, or I do not see the air after all and nobody can, like Dad says.
Airing on the safe side, I decide that maybe both things are happening: that I’m not particularly adept at explaining the things I experience, and that I must be wrong about what I see. It feels better to be wrong than to be disbelieved—or worse, differentiated and alone. The constant visual static—the laughing, dancing, vibrating, haunting air—never goes away, even more than twenty years later, but I stop believing that I am seeing it. Never underestimate your own power to talk yourself out of believing your own experiences.
***
I will be thirty-one when I am finally diagnosed with both Adult Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD, Level 1 / Mild). Did you know that many of us autistics experience visual snow—an unexplained visual phenomena where a person can see constant, moving pixelation in the air?
You might call it a neurodiverse method of recognition.
***
On Recognizing Neurodiversity in Writing Centers
Writing centers hope to, as Romeo García suggests, “cultivate a mindfulness of difference and be mindful of spatio- and temporal attributes.”² However, at present, being a writing center director with both ADHD and ASD often feels like operating in a world where everyone is—a la Barthes (and in truly good faith)—studying and describing the air, describing air as “the Grand Unseen,” and coming up with new breathing strategies to encourage more people to inhale deeply more often. We have journals dedicated to air and the study of its ineffability.
But I do see the air, I try to say.
That’s not the point. That’s not how air works. And anyway, we’ve made sure the lights are on so you can see clearly, our field says back to me while not quite glancing in my direction, and surely our commitment to electricity means you can see clearly as anyone else. I stand still, close my eyes, practice deep breathing. I practice the lifelong meditative skill of accepting my own unbelonging, my not-yet-arrival, carving out a tiny space within myself where I can be believed at least by me. Even here, in the darkness behind my eyelids, I can still see the prismatic, immutable air.
The difference between what I can see and what you can see, and the physiological traits that foster that difference, are known as neurodivergence.
Coined by Dr. Judy Singer in the 1990s, the word “neurodiversity” intends to “shake up the existing orthodoxies of not only the medical and psychiatric establishments, but also of the disability rights movement.” Neurodiversity moves away from rhetorics of disorder and toward rhetorics of multiplicity, or the idea that there are many neurotypes and that not all-but-one are disordered. Neurodiversity’s framework leaves room not only for differences in our brains but also for all that is yet unknown about them—it doesn’t attempt to diagnose or cram unique experiences into one medicalized identity model; it allows for varied traits and subjective experiences; it is, in essence, a “queering” of mental disorder or neurological traits. We can, as Jerara Nerenberg puts it, “tell different stories” about neurodivergence (198). And so let me be clear: I am just one person whose experiences do not represent the whole of the neurodiversity buffet. Many people with autism and/or ADHD have traits wildly dissimilar to mine, or have some things in common with me and others not at all. There is no one way to recognize neurodiverse people, nor any one way for us to recognize you.
The flexibility and possibility of neurodiversity is akin not only to the flexibility and possibility of queerness (McRuer), but also to those same core practices within writing center studies. As a field, we have done such important work on the crucial intersections of race, sexuality, gender, and socioeconomic status and writing centers / higher education; I hope we will soon approach disability and neurodivergence with that same rigor and transparency. In Composition Forum vol. 39, Christina Cedillo cautions: “Foregrounding the material and embodied needs of audiences requires that we be upfront about why we do the things we do, that we eschew universal ideals in favor of plainly centering race and disability, whether our own or that of our students when we write and teach others to write.”
Writing center scholarship has infrequently done this type of foregrounding with regard to disability: inconvenient, perhaps, and in many ways difficult to study, the conversation about writing centers and disability usually seems to go about this far:
Are your doorways wide enough for a wheelchair?
A. Make them wide enough for a wheelchair. Very good.
Is something else wrong? More than the wheelchair thing? Refer them to the campus disability office. They can get help there. Oh. They’ve already gone? Do they have paperwork to prove it? We can’t be responsible for this.
We aren’t specialists. We can’t be responsible for this.
We can’t just change the rules for everyone all the time. We can’t be responsible for this.
We have one book in our field about disability (Babcock and Daniels’ 2017 text, Writing Centers and Disability) and the International Writing Center Association’s Position Statement on accessibility is a solid decade old. I truly don’t believe anyone in our field intends malice against disabled students or colleagues. But—here, quick, while no one is looking but you—check your syllabus, your handbook, your website, your institutional documents for your center: How many disabled folks have you hired? How many do you know/work with? What else do you know about disability? What else have you done to foster access? What else have you read about it? Anything? Sit with that. Everyone like me has to sit with that; just for this altruistic minute, you can too.
And to be clear, I’ve only asked about what concrete materials you’ve developed concerning students. I’ve not yet begun to touch the ever-present, haunting of the unwritten rules that follow faculty, directors, and administrators around—something Margaret Price writes about so powerfully in Mad At School: “The fact is, not all job candidates are equal in . . . kairotic space such as interviews, [wherein interviewers] single out and punish with particular force traits associated with mental disability” (105). We academics, we administrators—we mustn't disclose our infirmities, our weaknesses, our need for accommodations. Particularly in a field like writing center work where so much of a center’s success relies on the networking, planning, and improvisational abilities of its leadership—what psychologists would call “executive function”—the traits associated with invisible disabilities present particular challenges. Price writes:
Isn’t it the case that a person with Asperger’s, or anxiety . . . may unintentionally come across as dismissive, or even insulting? Isn’t it possible that short term memory impairments might impede a candidate’s ability to extend thanks, display knowledge of [the] unfamiliar . . ., and pay attention in approved ways? Are we comfortable treating these difficulties as dealbreakers in candidates? What sort of academic culture are we creating if the job candidates we accept are only those who can avoid outbursts, memory lapses, or outlandish coifs (120).
The spectre of disability and unbelonging prevents arrival: there is unmooring. There are phantoms in the air, and while I can see both around and through them they color the light. We aren’t seeing the same consultations, the same rooms, the same meetings, the same conferences, the same experiences. We are side by side at times, you and I, and still worlds apart. We can’t visit each other’s worlds, either. The best we can do is believe each other.
There is such a loneliness to that. And such possibility, too.
There is possibility in me, a disabled writing center director, and in light, and in air, and in what Price and others have called kairotic spaces (including the ones you may not see but others can). In her book The Body, Theorist Lisa Blackman writes, “We . . . need to move beyond thinking of bodies as substances, as special kinds of thing or entities, to explore bodies as sites of pentiality, process, and practice (5). Disability is both socially constructed (“. . . a political and cultural identity, not simply a medical condition” (Dolmage 5) and within/of the body—and each is a kairotic space. The experiences of disabled people within writing centers and what writing centers want to recognize or believe about themselves intersect in ways that can’t be teased apart. Blackman notes that “the sentient lived body is a good starting point for examining the complex intersection of nature with culture” (Blackman 87), arguing against Cartesian dualism. The body, the mind, the brain, the world they inhabit—they bind together. And too often, in the case of disabled folks, the story then disappears.
I want to appear out of thin air. To materialize. I want to stop being a ghost, both haunting and haunted, something only on your periphery. Disability scholar Eli Clare movingly declares that we unchoose disability in hundreds of ways (29). I’m trying now to choose my beautiful, disabled self. I had to wait thirty-one years to believe my own experience of my own life. I hope it will take me less time than that to convince you.
***
Spring 2020: An Interlude
A global pandemic strikes. My institution sends us all to work from home, and I discover nearly immediately that my quality of life benefits immensely when I have more control over my environment—control I’d never had before. No surprise knocks on my office door. No excess noise or lights. No abrupt changes. No interruption. No exhaustive socializing and small talk around every literal and metaphorical corner. I joke with others that while I am an “introverted extrovert,” I was clearly born to withstand quarantine. I move happily from day to day with only my wife and my cats; I see my parents and brothers (who live eight hours away) as often as I safely can. And in this blessed quiet, I finally have time to see myself more clearly through the dazzling, still-electrified air.
I notice the change, the quiet, the peace. I start to chart what stresses me, when various moods occur, what’s really going on when I feel fatigued or annoyed. I talk with my wife, and we agree that I experience many symptoms of ADHD—particularly as it appears in AFAB folks: I struggle with executive function and task switching, despite strong organizational coping skills; surprise interactions are hard for me, and I get both irritated and tongue-tied easily when caught off guard; I am incredibly, almost painfully sensitive to sound and light both as sensations and as distractions; my brain is always shouting at me; my attention span is all or nothing. I’m exhausted—truly exhausted—pretty much all the time, and I find the basics of everyday life very hard (though I never miss a meal, a shower, or a deadline). I’m tired of finding life very hard. I decide to pursue formal testing for neurodivergence.
***
Before the testing, I’m afraid of what I’ll find out; I’m afraid I’ll be told I’ll need medication for the rest of my life; I’m afraid I’ll find out that I am… limited, I think. In The Cultural Politics of Emotion, Sara Ahmed writes that fear “in its very relationship to an object, in the very intensity of its directedness toward that object, is intensified by the loss of that object” (65). And I am certainly afraid of the loss of my own possibility, of my mind. For an academic—a career mind—this is a frightening pill to swallow and so for months I turn away from it before finally convincing myself to begin the referral process.
But as a typical academic, I can’t leave well enough alone. I start researching everything I can about my symptoms. And the more I research, the more I learn, and the less sure I am that ADHD is all that’s going on. A typical ADHD diagnosis doesn’t account for all my most vexing struggles. I’m either the opposite of a medical miracle or something else is going on. I need to read more, I think to myself.
One night, we are driving back to Michigan from Pennsylvania and our car feels like a sacred, separate little rocket ship shuttling along in the dark. I love night drives—there’s less distraction and my eyes and mind are more at peace. Colors feel more vivid against the inky blue. I look over at my wife, who is driving.
“Do you have a monologue in your head?” I ask, remembering a social media discussion where some folks have total narration inside their minds—a running script, it would seem—and others don’t. My wife confirms that she does have a narrator in her mind, and that even if it happens very quickly, she can always internally recognize her words or thoughts before saying them. I sit in the silence. Not the answer I wanted. We are not alike. I am again unarrived.
“I don’t have any words inside,” I say, bracing myself for disbelief.
“What do you have?” she asks, instead of telling me I’m wrong.
I describe the inside of my mind: There aren’t words, just pictures, colors, light, sound, smell, and what I can only describe as “senses'' that seem like hazy, reconstellating forms of context. Everything is always moving. Sometimes, my “senses” feel like watercolor leaves drifting softly in a puddle of rainwater. Other times, there is lightning and neon and the force of a hurricane and nothing stays still. While I can think of words or hold one or two in my mind at a time, I don’t think in sentences. I think in images, in colors, in “senses.” It’s frenetic and difficult, but it’s also generative. Also, I’m quite used to myself, so it’s not as bad as it sounds on paper to live inside this brain of mine. I work best alone, though, because it’s awfully hard to convey what’s up here—gestures vaguely—to anyone else, let alone collaborate.
“I don’t ever really know what I’m going to say until I say it,” I tell her, “and it always feels like I’m meeting my words for the first time. Whether I’m writing or speaking. That’s why social stuff makes me so anxious.” I never know what I’m going to say or do until I’m saying or doing it, and I never know if it’ll be right since I can’t plan the words ahead of time. Even if I’m trying to plan how I want to come across. It’s exhausting.
My wife doesn’t tell me I’m wrong. She just listens. I pause, think, and then try again.
“What do you think in your head when you see things?”
She doesn’t know what I’m asking. I figure I will explain by example.
“Like here in the car, when my eyes rove around, my brain says, but like, without words: blue blue dark truck light radio 97.1 cars railing silver moon dark seat floor voice warm. Constant barrages of recognition.” My wife nods slowly.
“Is it like that all the time?” she asks.
“Yeah. Like a hurricane when I’m anxious. My brain just keeps hurling everything at me like it’s new and important and now, now, now.”
My wife’s brain does not think like this, she tells me, but she’s listening. I’m willing to talk.
I tell her that as a child, I was always told I talked a lot—sometimes, my mom and dad called me “Mouth.” I was, I think, always trying to make my insides visible. To process the noise, color, and light into something I could share. I only ever wanted to connect. But I probably also talked without stopping for most of my childhood, and I’m self-conscious now about oversharing information about my interests, feelings, or ideas. I’m permanently suspicious that I am annoying others. This makes it hard to make small talk, to lead meetings, to be sure of myself in times where it counts: Am I getting it wrong? What will I even say next? Who can tell! What a terrible thrill!
But even as I hear myself explain these things aloud to my wife, I realize that I know. I know, because I am a good little academic who has been reading, and reading, and reading. I have canvassed the literature. And I know with increasing dread that while I surely have symptoms of ADHD, I also seem to have very many symptoms of AFAB-presenting autism. This is a gut punch. How can someone like me be autistic? This disbelief is a painful and inaccurate bias I will work to unlearn over time.
I think out loud to my wife, listing out things that may confirm the possibility: my social unease, the sense that I am forever a performing monkey when around most people, my particularity about my appearance, my schedule, and my possessions, my unwillingness to voice or believe my own discomfort (and a propensity to get bruises or injuries I can’t remember getting), my intense interests and ability to both focus and produce in extreme quantities at some times and not at all at others, my passionate distaste for meetings of any/all kinds, the lack of a mind-based conveyor belt for thoughts and words to receive inspection upon before leaving my mouth, my strident opinions, my love of rationality. And then there’s visual processing issues: I can, after all, see the air.
I talk myself out. I wear myself out.
“I’m tired,” I say, putting on a true crime podcast and counting mile markers.
My wife reaches over and holds my hand in the dark.
I wonder if medication will give me words inside my brain.
I wonder what that must be like.
On Writing Centers and Excellence
I’m not yet three the first time I touch the piano. My brother is thirteen, and he plays the piano beautifully; I adore him—want to do everything he does—want to be just like him. He is loving and good, it seems to me, and I want to be good too. I watch him and learn him, liking the sounds of the music he listens to and the way he smiles at me and his willingness to have tea parties with me on the back porch even in January snow. I want to take piano lessons so I can be more like him. “If she can sit still, I’ll take her on,” his teacher tells my mom. I promise to sit so still. Very still. The stillest. Please, just teach me this thing.
In the years that follow, it turns out I’m as good as my brother. Maybe even better. Piano is solace: I can make meaning, emotion, and story with my fingers and not have to move my face at all. I now know that this departure from performing affect is a specific form of relief for me; in childhood it feels like a vacation from my body. I seem to always be trying to escape my body, but I don’t know why.
I will later recognize that affect—the way in which your body or face performs your emotional state to communicate that state to others—is hard for me (and for most autistics). It takes work, especially when I’m tired. But I don’t know that yet, not at age four or seven or even twenty-seven. I just know that my whole self can rest yet still be understood when I play the piano.
At my parent’s encouragement, I practice for an hour or more every day. Decades later, I learn that this ritualistic expulsion of tactile energy is likely a form of stimming³ or even fidgeting. I learn much sooner than that piano keeps me intensely calm and safe inside myself. So I play more, and more, and more. Achieving feels concrete, feels good. At age thirteen, I will win a youth competition and play in a concert at Carnegie Hall in New York City.
The piano is my first lesson in excellence. What I learn is this: If you are excellent, if you are perfect, if you don’t make mistakes or let on that you’re only feeling your way through, you will create things that other people will understand—and in understanding your creations, they will perhaps understand you. Though maybe this isn’t a lesson piano teaches me; maybe it’s a compulsion brought forward by neurodivergence that playing the piano only justifies. It doesn’t really matter either way. The belief sets.
***
Writing center practitioners must, too, be excellent. In a field known for its labor precarity⁴, we lack the option of assuming our colleagues know or value the work we do and we usually lack opportunities to delegate work we find personally challenging. Casual examples of this work include: developing tutor training courses and teaching them, mentoring students at both the undergraduate and graduate level, carrying out writing consultations ourselves if tutors aren’t available, responding to drop-in meetings and sudden incidents within the center—all things that require much executive function, and all things that are particularly fatiguing for a neurodiverse writing center director. We are never, it seems, not singing for our supper. But does the academy see it that way? Seems not: Robert Anderson notes that “When institutions treat disability as something inside a person’s body, they fail to see it in the campus environment” (188). And so: the consistent pressure to maintain funding, staffing, scheduling, training, and research for our centers becomes just “part of the job.” The academy locates my difficulties within me, not within an underpaid, undersupported, underresearched, overtaxed, jack-of-all-trades scholarly and administrative role whose constant (and necessary-for-survival) “people-ing” has very little to do with my credentials, PhD, scholarship, or curriculum development talents.
However, disengaging from or questioning this intensive work—or to enlist support in doing it, or to seek ways to do using methods that are healthier for disabled minds or bodies—remains taboo. Numerous studies (Baldridge and Swift; Santuzzi et al.) indicate that disabled academics rarely request accommodations in an effort to keep their disability status hidden—and with good reason: academia puts a high premium on equating normalcy with the quality of a person’s mind and work (Iantaffi). This is why diagnostic “functioning” labels for autistics are unhelpful: autism and excellence are not mutually exclusive, though ableism preaches otherwise. Diagnosis isn’t about how highly you function—it’s not about what you do well or how you cope: it’s about what’s hard. Using a stepladder all my life does not make me less short; successfully using coping strategies to manage my work/career does not make me less neurodivergent (or make my work less good). Still, misguided perceptions persist.
If being willing to pursue a disability diagnosis as an adult requires both introspection and humility for anyone, requires a smidge more for an academic. I am constantly using my brain to write, to mentor, to teach, to create. My brain is, in so many ways, excellent and it has always been how I have earned both belonging and love (from myself and from others). The diagnostic process—the pursuit of the possibility that my brain isn’t working “as it should”—breaks both my mind and heart. Inside my ribs, a seven-year-old Karen wonders: How can I need help and still be excellent?
On The Devil in the Diagnoses
The process of diagnosis is just as punishing as the impetus, and shows me just how dangerous an emphasis on formalized medical diagnosis is for anyone unable to slog through (or afford) a months’ long war with insurance, with scheduling, with finances, coupled with the deep anxiety of waiting. If I were a student attempting this process, much of the academic year would pass before I could secure a diagnosis, paperwork, and accommodations—a process Dolmage describes as not so much as asking “. . .for a special advantage within a world in which your needs are centered -- rather, it is to identify your needs within a framework in which everyone . . . seem to know what [you] need, and who [you] are, better than [you] do [yourself]; a world in which any small, real adjustment can be quickly inflated into . . . fictionalization; a realm in which asking for help is immediately stigmatized” (69). It is difficult enough to seek help and more difficult still to wait while help slowly, unenthusiastically arrives. If it arrives.
Stephanie Goodwin and Susanne Morgan succinctly describe another layer to the stress: even though universities are beginning to invest more in developing programs that support disabled students, “few models exist for parallel accommodations to promote the success of faculty members with [disabilities].” (Evans, et al. 198). All this could be for nothing, I think to myself, as I pick up the phone to schedule my referral.
Still, I am on my own side. I recall reading Jenara Nerenberg’s book Divergent Mind. Nerenberg suggests that the most helpful part of adult diagnosis for women is the diagnosis itself—the knowing, the connecting, the understanding—and that in seeing one’s self more clearly, the world too comes into better focus (203). I am banking on this.
On Parody as Coping Method
To be hummed to the tune of the Barenaked Ladies’ song “One Week…”
It takes two months just to call the doc.
She acts real shocked when you tell her why you wanna talk.
Two weeks, testing center calls.
They say the next appointment’s at the end of fall.
Six weeks ‘til the testing starts.
Six hours of answering questions with a racing heart.
One month til your follow-up,
which is a thirty minute call where the doc says she’s sorry.
She says you’re ADHD and ASD,
and that it’s plain to see --
but she’s got no resources to give you.
You feel panicked so then frantic you try to call your GP
but it’s Titanic, ‘cause you’re sinking ‘cause they never got your paperwork.
You tell the doc that you’d like meds for ADHD.
She says “Prescribed by me? It’s just, I’m not a psychiatrist..”
Eventually, you get off the call RX in hand:
you finally have a plan!
But your insurance won’t approve it.
Two months of changing doses, mild psychosis, and some creeping vague neurosis.
Finally you find a dose of it that doesn’t try to kill you.
Still see the air -- for real, it’s there!
But you tell no one, ‘cause you know they won’t believe you.
This was a much more succinct and perhaps even amusing way to describe what was, ultimately, (from when I first believed I had symptoms through when I finished titration) a seven-month stint in hell. (University accommodations took thirteen months to secure.) Each step takes tremendous vulnerability, takes weeks or months. Each step was “hurry up and wait,’ and changed not only how I felt about myself but how others felt about me: whether the “others” were my doctors, my wife, my friends, or my colleagues. I remembered reading Carol Ellis’s depiction of being disabled while working in writing centers—she recalled “becoming a case study in disability . . .” (Ellis 35). This terrified me, because I could feel the gap between my disability and my work disappearing. And not in the way I’d hope:
Common themes among . . . personal narratives of student affairs professionals with disabilities included significant differences in the experiences of practitioners with apparent disabilities and those with hidden disabilities . . . Being able to (personally and organizationally) to set limits, engage in self-care, and advocate for oneself are struggles faced by those whose impairments limit their energy or are exacerbated by stress or lack of rest; often this problem was made more difficult by writers’ desire to prove they had no limitations and could accomplish as much work as, and in the same manner as, their nondisabled colleagues (Evans, et al. 211).
Sounds familiar.
I spent months anxious, tired, reading too much about my symptoms. And I was so angry, too, that as an exhausting, pandemic-laden semester dragged on I was helpless to expedite my own process of getting help. I couldn’t bring myself to tell anyone what was happening, manifesting what Moira A. Carrol-Miranda describes as “the continuous act of positioning [my]self from within and from the outside” (279). I know what it feels like to have someone tell you that you can’t see the air; I wasn’t going to risk being wrong again without proof. And even with proof: What if others thought less of me? What if it ruined my career? These were and still are valid questions. In Shahd Alshammari’s “A Hybrid Academic Identity,” she writes that disability “holds negative connotations and is associated with lack, failure, and loss” (27). I think of Ahmed, of fear intensified by impending loss.
I feel fear. I feel loss.
Even the best autistic masking⁵ fails during seven months of extreme duress: in meetings, I was tired. Mentoring students felt very hard indeed. Planning programs and syllabi. Following up on emails. Delegating. Supervising. All of it felt impossible. Each day: a new sense of dread, winding together with an increasing awareness that most of my struggles were directly linked to symptoms I was now reading book after book about, and then trying to understand those books, and trying to anticipate what the psychiatrist would finally tell me at my follow-up appointment, and then to anticipate what titrating medication while trying to hold down a director-level position at work would feel like. For the first time in my life, I felt like a failure. Reader, I did not feel excellent.
But like any good autistic (I jest), I have learned to mask that sense of failure.
I have to.
Behind the (Autistic) Mask
I can’t allow feeling not-excellent to stop me, not when I can avoid it. Though my disabilities tack on significant cost to the tightrope-walk of high-performing academy work, I recognize the incredible privilege I have in that I can—at least, to the outside eye—push through most things, and that many disabled people’s limitations prevent them from cobbling together the facsimile of “fine” that I rely so heavily upon in my career and personal life. In the 2020-2021 Academic Year Of the Global Pandemic, I gave numerous invited talks, published articles, continued field service and university-level service work, taught multiple classes. I didn’t have any choice; I’m thirty-two years old and my academic career is at the pivotal late-early-stage where I need to continue to carve out my professional identity. The reality is that “the way time is organized and valued and productivity is evaluated -- both organizational issues -- can create barriers to disabled employees” (Evans, et al. 206). No matter how much I want to be gentle on myself, I just won’t get publications or visibility or a promotion or recognition if I don’t find some way to keep surviving the work. I want this to not be true, at least not all the time, but here we are. Price and others have argued for the idea of cripping time in the academy—finding alternative ways to meet expectations or even deadlines. But we’re just not there yet. Not in practice.
To be sure, this grinding pace we’re accustomed to in the academy is hard on everyone. Everyone. It’s just hard in specific and complicated ways for a person whose ability to regulate stimulation, rest, and stress is seriously compromised. It’s hard for me.
As an autistic woman, I am deeply trained by our culture and my own survival mechanisms to stay hyper-aware of what the people around me want or need me to be, and then… to be that. Autistic women often fly under the radar this way, with many of us often being told “I would have had no idea you’re autistic!” Well, sure, you wouldn’t, because the entirety of my public personality is constructed to make sure you don’t. I’ve been practicing all my life—that’s what masking is: trying to keep up with and fit into the body and bodymind the world expects you to occupy.
I have a complicated relationship with masking—I both resent it, in that it precludes me from entirely knowing who I am, and yet I desperately need it to get by:
It doesn’t matter if a surprise meeting gets added to my calendar and my very soul leaves my corporeal form because I can no longer sit still or perform my affect (“fixing my face”) for another solitary minute without suffering: I need to say “Sure thing, I’ll be there.”
It doesn’t matter if trying to represent the writing center at New Student Orientation fills me with such anxiety that I do not sleep for two nights beforehand nor for two nights after, and am selectively mute when I finally get home: I have to pack the swag bags and head to the student union, and Do The Thing. To see me out there tabling, you’d think I enjoy it.
That’s what I need you to think. That’s how I manage. However: I am no stranger to seeming better than I feel. That skill has taken a lifetime to build.
****
In high school, I am a Speech and Debate star. I am a national qualifier several times in the speechwriting category, and what takes so much practice for others seems to come naturally to me. Writing and memorizing a speech is one thing—but curating and then memorizing the affect you’ll marry to your delivery is second nature to an autistic AFAB person.⁶ I decide how I want to look, sound, and “feel,” and then I deliver. The same skills prove useful later for teaching. And for running a writing center. And, well, life. But there is a cost, then and now: After winning nearly every tournament every weekend, I come home completely depleted. The victory feels like a tangible achievement, yes, but I just want to hide. I tell my parents how badly I want to quit. They don’t understand why—I’m so good at it. I guess I am so good at it, I tell myself, and maybe this exhaustion is just part of giving something my best. The belief sets. In fact, it calcifies into a core personality trait I am working hard to unlearn (and, even more importantly, to help others unlearn).
There is an unspoken fourth thing, too, that I’ve mentioned before: Writing Center people are, implicitly, people people. “We” love collaboration, face to face interactions, engaging strangers and learning their stories, sitting in close proximity to one another and exploring academic intimacy, the energy-boost that comes from presenting a workshop or guiding a consultation. To be a Real Writing Center Person, I must excel at/love these things—or else how can I mentor the students who I hope will do the same? Margaret Price puts words to my anxieties:
How does one speak (either aloud or on the page) if one’s mind spins with anxiety, grapples with depression, freezes with panic, or is occluded by brain fog? What shall we do with notions of collaboration, activism, and community that presuppose all participants will arrive at the table ready and able to engage in ‘lively’ (and implicitly) logical conversations? (“Her Pronouns Wax and Wane,” 13).
I’ll let you in on a secret: I dread most of these social, collaborative things. I may be more a Writing Center Ghost, then, than a Real Writing Center Person. I haunt and am haunted by our spaces, our practices, our community, and the gaps in our scholarship. However, I’m hopeful: I don’t think someone needs to love high-octane personal interactions to be a successful writing center professional (whether at the student or administrator level). Instead, I think our field needs to think more critically about the ableism inherent in our most esteemed practices and traits (from reading out loud to nondirective consultation strategies to the neverending networking of administrators) and find other ways to honor the value of our work and of one another.
Disabled writing center practitioners deserve honor and recognition, too.
On Honoring My Beautiful, Prismatic, Disabled Self
Chess is one of my life’s great loves. I practice about an hour a day, every day. I read books about chess. I play against strangers online. I’m annoyed when everyone else falls in love with The Queen’s Gabmit on Netflix. After receiving an honorarium for a talk I’ve given, I buy a particularly expensive blue and boxwood Staunton chess set. It glistens. To play on such a fine board feels like being made of lightning.
Chess is order. Calm. Intelligent. Dramatic! Contained. Fascinating! Chess is pattern and forecast, and I play chess in a way similar to how I navigate the rest of my life. I have to think ahead, consider future steps, wonder what the other person is doing, calculate what risks to take, and try hard to see see see see see what the right next move will be. Often, in life as in chess, I find that it’s hard to make the pieces stay still in my mind and I can stare at the board for a long time without knowing what to do. Despite knowing. ASD often comes with deficits in visual processing, and I experience them while playing chess. Some folks take to chess naturally; others, like me, must pore over books and practice ad nauseum to improve. Yes, this is a parable as much as it’s a story.
Immediately after my diagnoses, I am terrified of taking medication: What if it changes me? Does it mean I’m dependent? Does it mean I can’t manage my own life without a pill? I decide I’ll only take it on workdays. Maybe not even every workday . . .
The morning I do begin taking medication for ADHD, I am unsettled by the way my body feels. A little tight. Anxious. Fluttery. Things that will go away in time as I adjust. But before they go away, I’m looking for a way to settle myself and I wander to my iPad and pull up my chess app. I start to play.
For the first time, the pieces stay still. I see all the answers immediately. I make the right moves. It feels fun and easy. I feel like I’ve got control of what I’m doing and planning. I slaughter a dozen internet opponents in a row and improve my score by hundreds of points. I am not miserable when my wife asks how practice went. Instead, I’m okay. I’m okay.
The parable completes.
I decide that I will take medication all my life if it means that the right moves won’t always be so hard to find, if it means I can recognize my own mind. I resolve to never disbelieve myself again.
***
On Recognizing Possibility and Access Intimacy
My work life during quarantine has been relative bliss. I’m home, with my wife and our cats, in my own space. I can burn candles and diffuse essential oils in my work space. I can work in natural light. I set my own schedule for work, for meditation, for exercise. I can see changes coming ahead of time. I’m comfortable in myself and I’m rarely asked (aside from Zoom fatigue) to put myself in situations where I’ll find it hard to cope.
I’ve gotten used to being surrounded only by people (and cats) who love me and want me to be comfortable. My access needs aren’t hard to meet here at home, and my wife graciously embraces them/me. She understands my access needs and so I no longer feel the need to constantly explain myself. Like the most practiced zen master, it seems her entire relation to me comes from a place of loving. Simply, she loves me. What I need, she wants me to have. Who I am, she respects and appreciates. What I say, she listens to and believes. And while this is perhaps true of many married couples, I posit that my wife has a harder job because I am not always easy to care for, understand, or know. I’m like a Jackson Pollock painting, but in person form. Stacia accepts and appreciates me as I am, seeing beauty where others see chaos.
Here, with her, I have what Julie Minich coins in her blog Leaving Evidence as “access intimacy: “that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” Minich describes “a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access. I don’t have to justify and we are able to start from a place of steel vulnerability. It doesn’t mean that our access looks the same . . .” . I feel safe in my relationship because I can plainly ask for what I need and I believe my request will be embraced not as special treatment, but rather as an act of care.
I think we can, as a field, do more of this type of care with and for one another. We can, as bell hooks reminds us, choose love: “Choosing love we also choose to live in community, and that means that we do not have to change by ourselves” (hooks, “Love as The Practice of Freedom”).
We can move toward access intimacy by listening to and believing one another—and by creating space for others like me to come forward in their truths, and ask for what they need. This means talking openly about disability (whether visible or invisible) and meaning it when we say we want to accommodate. It means openly developing possible accommodations like flexible scheduling, or allowing for rest and recovery, or even offering opt-outs of uncomfortable practices.
This type of movement requires us to admit that we have not yet arrived—literally or metaphorically—at a world where disabled writers, staff members, consultants, or administrators are received in their fullness. There can only be intimacy or recognition if there is trust, and there is neither without interdependence. I am reminded again of hooks: “Until we are all able to accept the interlocking, interdependent nature of systems of domination and recognize specific ways each system is maintained, we will continue to act in ways that undermine our individual quest for freedom and collective liberation struggle.” She’s right. I’m writing this article because I’m trying to trust you, to depend on you. I want you to recognize me. I want to give other people like me the chance to be heard and believed. If even one person reading this becomes less scared to know themselves, I will feel joy.
Joy can be work. Joy can be hard. Joy, in any form, requires recognition. And part of that recognition requires transparency and intentionality in acknowledging where there’s still more work to do.
We can consider multimodal formats for our publications, including providing audio options of articles and books for readers who need them; we can develop Accessibility Committees within our service organizations and within our own centers, and those committees can continually audit our services, our conferences, our websites, our programs, our training—all of it—to ensure maximum access. We can encourage our mentees to research and write about disability as a powerful component of restorative justice. We can empower and believe the neurodiverse among us, encouraging those who live with disabilities to share openly about their experiences and to tell us what they see, experience, endure, and hope for.
We can ask ourselves hard questions about our own centers and practices. What of your centers’ physical spaces or programming: do you provide accessible space for consultations? And when your think about accessibility, are you thinking only about, say, space for a wheelchair but not quiet rooms for those with attentional difficulties or asynchronous or virtual sessions available for folks with social challenges? What about your hiring practices? Your training practices? What’s it like to work for your center—do you have remote, asynchronous, or flexible shift options? Do you provide accommodations for consultants who struggle with the uncertainty of drop-in consultations? What staff training do you facilitate on disability justice or access? Does your center have an accessibility statement? Do you know whether or not your website is accessible?
When we imagine a future for our field, do we collectively and intentionally imagine disabled and/or neurodiverse writers using our spaces? Do we imagine hiring and accommodating disabled and/or neurodiverse consultants? And maybe most vulnerable for me, at present: do we imagine hiring disabled and/or neurodiverse administrators? Will we publish their work? Will we take them seriously? Will we accommodate their access needs? Will we find ways to shape our workdays, conferences, publications, and field to better center their experiences? Will we empower those administrators to take up space, to seek accommodation, to demand validity?
I’m asking a lot of questions here, I know, and I’m asking them because as a field we need to answer them. So much depends on it. I’m trusting you.
Disabled writing center professionals deserve to move from the margins to the center. They deserve for their access needs to be met and respected whether or not their disability is visible to or understood by others. They deserve to feel safe at work. They deserve to feel wanted, celebrated, welcomed. To feel beautifully and wholly unsolved—yet recognized.
“I’m telling you stories. Believe me.”
-- Jeanette Winterson
Notes
From Hutcheon & Wolbring: “Work by Judith Butler and Michael Warner on the word ‘queer’ may illuminate these new uses as they relate to ‘cripple’ Warner notes that ‘queer’ is used not only to describe a particular identity or trait of a person but as a verb to describe a resisting of ‘the regimes of the normal’ (Warner xvii). ‘Queering’ is an always-changing and an often re-deployed “site of collective contestation and the point of departure for a set of historical reflections and futural imaginings” (Butler 228). In other words, ‘queer’ depicts a critical orientation to the world, a positionality, and a process by which power structures and oppressive assumptions are revealed and disrupted. ‘Cripping’ has taken on a similar flavour in disability studies. For example, Sandahl defines queering as ‘[spinning] mainstream representations to reveal latent queer subtexts [or] deconstructing a representation’s heterosexism’ (37) and cripping similarly as ‘spin[ning] mainstream representations or practices to reveal able-bodied assumptions and exclusionary effects’ (37). Wolbring, Gregor; Hutcheon, Emily (2013-08-20). "'Cripping' Resilience: Contributions from Disability Studies to Resilience Theory". M/C Journal. 16 (5). doi:10.5204/mcj.697.
García, Romeo. “Unmaking Gringo-Centers.” The Writing Center Journal, vol. 36, no.1, 2917, 29-60.
In Divergent Mind, Jenara Nerenberg describes stimming as “Movements -- such as flapping the hands or tapping the fingers -- that help relieve anxiety that comes with overstimulation. It can also take the form of mental stimming, such as repeating numbers, words, or letters (also referred to as echolalia” (73).
Fels, Dawn. et al. “Toward an Investigation into the Working Conditions of Non-Tenure Line, Contingent Writing Center Workers.” College Composition and Communication, vol 68, 2016.
“Women with autism are able to apply the systemic nature of their autistic brain . . . to the study and replication of people skills in order to imitate and participate socially. However, the mechanical (rather than intuitive) basis of these strategies means that at times of stress, it may be impossible for them to be maintained . . .” (Hendrickx and Gould 30)
“We are better at masking our challenges and blending in, perhaps because we are under more social pressure to do so . . . Many professionals will only give you a diagnosis if they judge that your ability to “function” is being severely impaired, which seems unfair since it effectively penalizes you for putting in the work to manage your challenges. Importantly, the diagnostic criteria [for autism] are skewed toward the male representation of autism.” (Cook, et al. 23)
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