It Cost $1,700 To Feel Like I’m Allowed to Write this Essay
Olivia Wood
Keywords: disability, biomedicine, autism diagnosis
Categories: Disability, Illness, and Survival (When the World Doesn’t Want You To); Somewhere in Between: Grad Student Perspectives
The title is more true than I want it to be.
During the spring of 2021, after over a year of wondering, researching, and becoming increasingly certain I was probably autistic, I decided to get evaluated by a psychologist. A significant motivation behind my decision was that I desperately wanted to talk about it, to talk and write about myself as an autistic person, but I didn’t feel authorized (authorized) to do so without a stamp of approval from a doctor I had never met. I wanted to tell my parents, but I didn’t feel like I could without the weight of the medical establishment to protect my ethos, despite the fact that the medical establishment has a pretty well-established history of not protecting its subjects’ subjectivity.
My main goal after receiving my diagnosis was to tell my closest friends and family and begin to explain to them some of the many things I’ve learned during this process --- about myself, yes, but mainly the many things I’ve learned (and unlearned) about autism. I surprised myself when, after my final feedback session with my psychologist, my partner was the only one I told immediately. What made me hesitate to text or call all the other people I wanted to tell? Wasn’t the whole point of getting diagnosed to end this self-doubt and help me feel confident sharing with others what I already felt certain was true about myself?
Beginning M. Remi Yergeau’s Authoring Autism that same week I was diagnosed was perhaps not the smartest decision I’ve ever made. After four reading sessions, I am still only on page eleven. As you can imagine, it’s difficult to be reading a book directly addressing the ways that an autism diagnosis is used to rob people of their rhetoricity, ethos, and their very humanity. Especially when a large motivation of going through the formal process was to gain the ethos afforded by having an official evaluation to back me up. The whole point is that I want to talk about it, to share my experiences in light of this new understanding of myself. “See? I’m not making it up!” is what I want to say, but the “it” I’m not making up is exactly what creates new doubts about my own reliability as a rhetor.
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In May 2020, I was supposed to present, at the Rhetoric Society of America conference, a paper called “The Depression Is Inside the House (Or, How the Conventions of Academic Writing Alienate and Exclude Mentally Ill Readers).” It was a semi-autotheoretical piece based on my experience of reading the chapter “Uptake and the Biomedical Subject” in Genre and a Changing World. Reading this chapter was incredibly uncomfortable, as it implicitly asked me to set aside (but “set aside” is not violent enough-- perhaps negate, repress, or bury) my identity as a biomedical subject, a person receiving psychiatric care for depression and anxiety, in order to engage with its argument as a rhetorician. I felt displaced within my own mind.
From my conference proposal:
“Conventional academic writing about mental illness forces me, as a scholar living with depression and anxiety, to temporarily split my sense of self while I’m reading. The text asks me to read “as an academic,” not “as a depressed person,” and implicitly sets these identities up as inherently separate from each other. I am supposed to set aside my personal feelings and read disinterestedly and “academically.” I am supposed to have sympathy for the genre and the discourse tradition of treating mentally ill people as removed objects of study, forgive the text for obeying this discourse tradition, and not make a fuss. Why is this forced disassociation something that we—professional academics—expect of each other? It creates unnecessary mental strain and emotional pain in a profession that already experiences above-average rates of anxiety and depression. The statistics show that when we write about people experiencing mental health difficulties, we are also writing about ourselves, our colleagues, and our students. How can we change our writing practices to create a more hospitable—and honest, and caring—environment for our professional community and current undergraduates who may be interested in graduate study but feel excluded by the discourse?”
I never got to give my presentation; Covid-19 arrived in the United States, the conference was canceled, and I spent that May in lockdown with my partner in a studio apartment smaller than my college dorm room. Like many, I had tremendous difficulty doing much academic work during the first several months of the pandemic. I mostly spent my days doomscrolling, playing Animal Crossing, and writing about the pandemic for Left Voice.
But now I am returning to those ideas, revisiting the ways I am figured by my own profession, now that I’ve voluntarily undergone a new diagnostic process, and yes, taken up the genres and discourses of the biomedical model to obtain it. When I first wrote this paragraph, the formal report from my psychologist was still sitting in my inbox unopened. Our feedback session in which she verbally described my data, her conclusions, and her recommendations was perfectly fine, but I was afraid to read the clinical, objectifying version of her description of my being. Reports like that are ultimately written for others --- the client, despite being the report’s first and perhaps only reader, is not the audience. It even got my birthday wrong.
Have the norms surrounding academic writing’s imagined audience changed in the 893 days since my first day of Covid lockdown, in light of our industry’s discussions around the diverse range of material, emotional, and circumstantial barriers and demands on our time that academics face? From the disabled activists on my Twitter feed and the reopening plans for universities around the country, though, it seems like the answer is, “Not really.”
Right before New York’s stay-at-home order went into effect, I was crying every day, agonizing over whether to go home to my parents before I was trapped. I desperately wanted to regress to childhood, to no longer be responsible for my own upkeep, to displace some of the physical and mental load onto my mother. Having written that sentence, I am hesitating, afraid to admit such a selfish, sexist desire. I want to delete it. My partner, a playwright, often refers to the advice to “write what scares you.” So with that in mind, I am not deleting it, because it’s true. A terrible, global, dangerous, and impossible-to-process thing was happening, and yes, I wanted my mommy. For a variety of reasons, however, my partner and I decided to stay in Manhattan, in our little box.
March, April, and May 2020 are mostly a blur for me, until the Black Lives Matter protests began. This issue is supposed to be about care work, but I feel like I largely failed at my care work during this period, both care for myself and for my partner, who was simultaneously dealing with pandemic-induced unemployment alongside several other personal and professional setbacks unrelated to the pandemic. When I felt like I had much brainspace at all, it went toward teaching and political agitation. I know I did the laundry and cleaned the apartment, and I know I converted my class to an asynchronous online format and continued to be involved in union organizing, but I don’t remember those things. Looking back at my records, events I remember taking place during March and April actually took place months before, and events I remember taking place at the very beginning of lockdown actually took place weeks later. We lived. We were able to pay the rent and buy our necessities. Neither of us got sick. That’s about all I can say for my own successes during this period.
I was supposed to be studying for my comprehensive exams. Based on my exam blog archive, I appear to have read only six books during the first six months of the pandemic. I wrote 25 political articles during the same time. On paper, this seems like an accomplishment, something to be proud of, or at least an example of pushing through and still producing (note the word choice) in difficult circumstances. It doesn’t feel like it, and I don’t say that to be modest. It felt like the only even vaguely positive outlet I had for my stress and anger and fear. Memory is notoriously unreliable, so perhaps I felt differently at the time, but in my memory, it was writing I did for myself, to cope, not to produce.
Since my diagnosis, I’ve been doing a lot more writing for myself and for my relationships with others. I wrote a 10-page autism education Google Doc to send to my family when I texted them about my diagnosis; I read a book of advice for building successful relationships between an autistic partner and a non-autistic partner, and I wrote a summary to share with my partner --- another 18 pages. One of the suggestions from the book is to put things in writing as much as possible: write notes to yourself, take notes during serious conversations, write out calendars and to-do lists, ask your partner to text you advance (written) notice if they want to have an important conversation, etc. I’ve been keeping a journal of social interactions I have particular trouble with, so that I can analyze them more effectively. I have another document of scripts for emotionally-fraught conversations, developed through extensive conversations with my partner. On my summer to-do list, I have a section for self-assigned “emotional homework.” While it’s wonderful to have a context for understanding my difficulties and tools from the autistic community for addressing them, this knowledge brings along with it an awful lot of work, not only for myself, but also for my partner, the person who interacts with me the most and often puts her own emotional needs on hold to help me with mine.
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In large part, I have a certain subset of the rhetoric and composition community to thank for my journey to self-understanding as an autistic person. Shortly before the 2019 CCCC conference, I connected with Cody Jackson on Twitter due to my interest in his presentation. Cody’s tweets about his own autistic experience sparked for me that first thought: What does it mean that I relate so much to this? As a result of watching Twitter conversations about conference accessibility with Cody, with Ruth Osorio, with Ada Hubrig, with Jesse Rice-Evans, and with others, when the time came, 4Cs 2019 was the first time I gave myself permission to ask for accommodations at conferences. When someone asked if anyone in the room would like a paper copy of their presentation, I raised my hand. When I saw the table with colored nametag badges designed to signal your willingness for social interaction, I took one. I formalized for myself my conference self-care rule, which is to always plan to skip one entire time block to sit alone and do nothing. My body has forced me to obey this rule since I first started going to conferences, but this time, I embraced and planned for it. It’s the only way I’m able to recharge enough to be able to participate in evening activities.
Growing up, I always thought that in order to “need” accommodations, you had to not be able to do the task without them. I always thought that because I was academically successful, I didn’t “need” any. It wasn’t until I gave myself permission to try out accommodations that I realized just how much better my life is with them. An amusingly trivial but nonetheless pivotal moment leading up to my decision to pursue a diagnosis was when I found myself ordering a second weighted blanket to be delivered to my parents’ house in advance of my visit so that I wouldn’t have to sleep without one. This seemed so obviously, hilariously neurodivergent, yet I still didn’t feel like I was “neurodivergent enough” to tweet a joke about it until I had a diagnosis in hand.
Now, I own not two, but three weighted blankets, and I recently purchased a pair of noise-canceling headphones: total game-changer. The noise-canceling headphones feel like a weighted blanket for my brain, especially now during the summer, with our window AC units constantly humming. On top of this, my partner is happiest with a high level of stimulation --- she’s always listening to music, or a podcast, or keeping the TV on in the background --- and this gives us more options for accommodating our respective sensory needs. I’m wearing them right now.
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I first reached out to the editors of this special issue to talk about this piece in April of 2021, months before I received my diagnosis. They were among the only people I even told I was pursuing an evaluation, other than my partner and a few close friends. I was so nervous to write that email, even though I had full faith they would reply with exactly the sort of kind, encouraging response that I received a few days later. Why does the genre of “diagnosis” loom so large in my mind? Why did it feel like I had to get a “permission slip” from a doctor who doesn’t know me in order to write an essay about my own brain? Even though I know why, and I know it’s a form of internalized ableism, it cost me and my family, who helped with a portion of the costs, $1,700 out-of-pocket anyway.
Since I began writing this piece, I haven’t read much more of Authoring Autism, although I do want to finish it. Even though Yergeau’s purpose is to analyze and criticize the way autism is written about, reading their summaries of how our disability is viewed weighs heavily on me. The only thing that enables me to keep going is their use of I, me, my, our, and we. Unlike the chapter I was supposed to present on at RSA 2020, I don’t need to divide myself in half to read it. Their authorial voice is there with me, a constant reassurance that yes, they say this about us, and it hurts, but they are wrong. Of course we can be autistic and scholars at the same time. Of course we are rhetorical agents, with purpose and intention and audience awareness. Of course we can write, and write as ourselves.
Bio
Olivia Wood (she/her) is a lecturer in English at the City College of New York and a PhD candidate specializing in queer rhetorics, specifically bisexuality, at the CUNY Graduate Center. Her work has appeared in the Routledge Handbook of Queer Rhetorics, the Journal of Bisexuality, and LGBTQ+ Studies: An Open Textbook, among other places. Olivia is also a proud union member and a writer and editor for Left Voice.