The day after I hit my head, I took the train to Kendall Square in Cambridge, where I was meeting a friend near MIT. It was overcast, gray and cool for late May. My body, the same body which had sustained me through long hours at the library and scouring code, was surprising me: it couldn’t keep the horizon in one place. I gripped a railing as the vertigo took hold.
I remember the afternoon through glimpses. I sat at a local lunch chain, trying to focus on my friend’s anecdotes as I chewed a beluga lentil salad. In a rooftop garden, I read an entire book of poems – it was Odes by Sharon Olds – until a dull nausea forced my eyes shut. When I opened them, I watched as groups of Google employees flowed by, easily recognizable by their company gear, and tried counting the number of women until it made me sad. Eventually I looked at the sky. I don’t remember how I got home.
I was concussed – that much was obvious. The signals were clear: I had difficulty with screen use, reading, and sustained conversation. I felt foggy, vague in a way that I associated with intoxication. Everything seemed too far away, like reflections in a car’s wing mirror.
I had no way of knowing how much the injury I had sustained the night before would affect my life. Only in hindsight did I see the irony of spending the first injured day in a hub of technological innovation, when the discipline of computer science would remain off-limits to me for over a year.
My first year in computer science welcomed me into a brightly-colored, high-intensity bubble. Everything seemed possible with little consequence. I bought into the easy glamor of well-funded programs and excessive opportunities after graduation, both pleasant changes from the literary side of campus where I spent the rest of my time. When I chose the notoriously brutal introductory course, I knew the workload would be heavy. I did it anyway, partly because I liked coding and partly because I was too stubborn to turn back.
Intensity, I thought, was the price of admission, especially as a woman who had never touched an IDE before. There was no room for anything but peak performance.
That freshman fall, I learned about linked lists and JavaFX against the backdrop of the 2016 election. I was optimistic, excited to cast my first vote. Come election night, I felt as though I might throw up. As the FiveThirtyEight prediction needle swung wildly, my friends and I circled the block aimlessly, for what felt like hours. I woke late the next day and ate my breakfast in silence. My feet carried me to the computer science building and into the lab.
The introductory course had reached a new intensity as we coded Tetris, the penultimate assignment of the course. I was spending even more time at my computer, but I found that it bothered me less. When coding, I didn’t have to think about the burning state of the world – a stark contrast from my classes in the arts and humanities. I could lose myself in debugging until colored shapes fell and rotated in my sleep. When I coded the game’s last feature – a label that flashed “GAME OVER” at the game’s end – a quavering triumph rippled through me, quick and exhilarating. It was this feeling that kept me coming back – the accomplishment, the escape.
I hit my head three days after my first year ended. Within a week, my diagnosis prompted a period of what I could only see as pure nothingness – what my doctors called simply rest. I was not allowed to read, use anything with an LCD screen, think too hard, or do any other activity which might aggravate my symptoms.
Instead, I lay in dark rooms, eyes closed. I began to understand the ways in which my education had trained my body and mind to sit for hours at a computer, typing and processing without respite. Now, just looking at a screen for a minute would cause my vision to buzz and my head to ache. I was unspeakably bored. I longed for absorption as my anxious mind circled. When the pain came, I wanted even more to shed the world just as I had my first year, following the election – but the world I now wanted to shed was my body, the one thing I could never escape.
Computing taught me to codify my disregard for my body as I bought into a glitzy culture that has never valued rest.
I never stopped wanting this, throughout what would become eighteen months of injury. But I eventually understood that the slowness of disability – the alternate timeline that had welled up in my recovery, similar to what disability theorists have called “crip time” – directly contrasted with the temporalities I had learned in computing culture my first year. Where I had learned to push through exhaustion to hit deadlines, my recovery demanded that I listen to previously-ignored embodied cues. I submerged myself into a full, dull rest.
Ignoring my body was a skill I’d learned long before computing, but computing taught me to codify my disregard as I bought into a glitzy culture that has never valued rest or care. The intensity of computing, which I had correctly identified as the price of admission to the discipline, lends itself to a desire to transcend embodied life – and therefore glorifies the separation of the mind from the body, indeed the subjugation of the body at the rational mind’s behest.
In contrast, disability scholars base their work around the notion of “bodymind” – the inseparable experiences of the body and the mind. My bodymind was exhausted. There was a mismatch between its newfound sensitivity and the bright, noisy world – a mismatch which, I later learned, forms the basis of the social model of disability, the favored conceptual model in disability studies. Unlike the medical model, which characterizes disability as a set of individual impairments and diagnoses, the social model of disability states that disability is fundamentally a state of misalignment between a person and their environment.
There is no treatment for concussions; the bodymind repairs itself at its own pace. Of course, it can and should be prodded. I soon began seeing a cognitive therapist who handed me inane crosswords and instructed me to do them while listening to music. These exercises were supposed to help resolve the mismatch of my sensitivity and the stimuli of public space. Between crosswords, I waited, letting the days wash over me in dark rooms, dreaming of a “better” that refused to come.
I spent six months away from school. At my doctor’s urging, I returned for the spring semester, head on fire and ears full of foam. I was still in recovery, which is to say that I was doing poorly. My nausea kept me hovering at my sixth-floor window, looking down with envy at the other students, who from afar seemed so strong and so well. On the floor of my dorm, friends sat and talked until my vision buzzed, at which point I would kick them out and collapse into bed.
It was one of three semesters I would spend without a single computer science course in my schedule. Instead, I took one linguistics class and one class in religious studies. I excused myself once per class to let the pounding in my head subside, and afterwards I wandered through campus in a bubble of noise-canceling headphones and sunglasses. Alex, Siri’s cousin on OS X, transcribed my essays and reading responses into Word documents. My list of accommodations encompassed everything that Accessibility Services could provide – breaks, extra time, notetakers, reduced screen use, last-minute extensions.
And still – the pain came. But I knew it would: I was there to re-adapt my bodymind to the demands of the world. I timed my work: each twenty-minute reading sprint was followed by ten minutes of rest. I performed physical therapy exercises every morning and walked briskly for thirty minutes each afternoon. At the advice of my doctor, I ate five small meals per day and removed simple carbohydrates from my diet to keep my blood sugar constant.
Through it all, I monitored my energy closely. I attempted to push my body to pure efficiency, seeing if I could accomplish just one more task without crashing. If I went too far, there was an escape hatch – half a pill of the controlled substance I’d been prescribed as a muscle relaxant. But it came at a price: a slow, heavy daze that settled over everything, even my symptoms, an opposite of optimization that would put me in bed for the rest of the day.
It was the closest I’ve ever come to biohacking, a phenomenon that I learned about through my class on American spirituality during our week discussing the spiritual underpinnings of digital technology. We read a chapter of Fred Turner’s From Counterculture to Cyberculture, which described the link between the counterculture movements of the 1960s and the early days of the Bay Area’s tech industry. Turner argues that this link was formative both to the early technology industry and to the technologies it created: many of those who went on to be key players in the creation of Silicon Valley tech culture were heavily involved in 1960s counterculture. They believed in the liberatory potential of a collective consciousness which transcended the bounds of the body – an altered state which they accessed through LSD at first, and later through computation. Quoting from a forum, Turner cites one counterculturalist as saying, “Am I this 6-foot body or am I something else that could exist beyond it? If we could get enough information maybe we could go beyond the flesh envelope.”
The counterculturalist echoed the notion of departing from the body, which appears in many disabled writers’ work. I too had wanted it, and for complex reasons. Johanna Hedva, a disabled artist and writer, writes at length about leaving the body in their performance work titled “My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want it to Matter Politically.” In this entangled state of loving and craving departure from the body, Hedva argues that care for bodies in the western medical-industrial complex is rooted in the separation and control of body and mind – when in reality the two are intertwined and unpredictable.
I felt this unpredictability in my own bodymind as it raced through essays and assignments one day and struggled to read a single page the next. On bad days, I experienced my bodymind as an arena of pain and disappointment, and I was angry with it. Like Hedva, I wanted to leave, a desire rooted in the basic impulse to escape pain.
Meanwhile, the counterculturalists’ yearning to escape embodiment was rooted in their wish to ascend to a more connected world, even as their own bodies – primarily male and white and able – remained sites of privilege. The counterculturalists could further see freedom from embodiment as the ultimate liberation, ignoring the ways in which our bodies are also things that do, in fact, matter politically – and the ways in which computation, that imagined tool of liberation, has come to be a tool of constraint, overwork, and exclusion, even for those it was meant to connect.
I finally came back to computer science for a web development class, eighteen months after my initial injury. Early in the semester, I approached my professor in his office with my paperwork from Accessibility Services.
“I’m here to talk about my accommodations,” I began. I explained my injury and my corresponding need for extensions and flexibility. He nodded absently and put the letter away. “I’ll also need extra time on exams,” I said, preparing to depart. It was my last accommodation, usually the easiest for instructors to grant.
He looked up. “I don’t give extensions on the final exam,” he said.
I opened my mouth, then closed it. With the pace of my improvements, I might not need the accommodations by the end of the semester. I weighed my options – I could easily protest and, if necessary, have Accessibility Services send him a strongly-worded email reminding him he was legally obligated to accommodate me, or I could just get on with my day.
Why didn’t I say anything? Cowardice, perhaps – or maybe it was just that after fifteen months of asking, I didn’t want to beg anymore. Though I did not end up needing the accommodation, I kept the grudge.
Culture in computing, like culture everywhere, is a slippery thing. It interacts with us each through the lens of identity, and so the same culture shows us each a different face. Most of the writing that exists on CS culture – this essay being no exception – discusses the ways in which it is exclusive, toxic, demeaning, or careless, especially to the marginalized. This is not trivial: given how discrimination enacts mental and physical stress, it is more than necessary to ask how CS culture excludes. It is far more difficult – and perhaps more complicated – to scrutinize why, and for whom, CS is a refuge.
This is the question that Dr. Amy J. Ko, a CS Education researcher at the University of Washington, asks about CS culture. Ko argues that understanding CS as a refuge helps us understand why it came to be the way it is, why it is so resistant to change, and also which of its aspects are valuable. In her 2021 IEEE talk titled “Deconstructing CS Culture,” Ko traces the history of computing as a sanctuary. She points out that early pioneers in computing were often socially or academically marginalized – people like Alan Turing, a queer and possibly autistic man, or women in mathematics who were shut out of the field after World War II. In their own way, the counterculturalists of the 1960s who helped found the tech industry sought sanctuary in computing too, seeing it as a means to escape the current world and to dream of a better one. Even many of the young men who have come to typify the “hacker” or the “geek” in the 1980s and 1990s often chose computing as a way to explore their interests without being bullied.
In all of these examples, computing is an escape from the world, rather than a way to engage with it. Ko’s characterization of computing as a refuge helps to justify the intensity of the discipline: why rest if computing itself is the respite?
I recognize my prior self in Ko’s examples. Hadn’t I, too, immersed myself in computing in order to think less about what was going on around me? Hadn’t I wanted the numbness, the absorption, the escape?
The web development course nearly broke me. The hours I spent in the lab shot up again. Despite the ways in which I had changed after my injury, and the reckonings in tech following the 2016 election, it seemed that the computer science department had remained exactly the same. My anxiety spiked, intense enough to disrupt my sleep and appetite. All the while, I was seething about the professor’s nonchalant refusal of my accommodation, and too exhausted to do anything about it.
By mid-semester, I dropped the course.
In the days following my decision, I made a strange discovery: I missed it – not the anxiety, but the familiar waves of absorption and accomplishment that came with coding and debugging. I realized that computation itself was a joy I was willing to fight for, despite the exclusionary infrastructure of courses and curricula that surrounded it. Within two weeks, I returned to the course. I caught up and finished it through what felt like sheer force of will.
The question remained of whether I still wanted to continue. After the combined stress of the course, the inflexibility of the instructor, and the occasional symptom, I could easily turn my back. Why, after everything, did I still want to return?
I wanted to simply be in my bodymind in a discipline I had come to love.
It wasn’t exactly the refuge I desired – it was something much smaller, much sweeter. Yes, I loved the clear structure and straightforward accomplishments: solve the problem, plan the project, fix the bug. More than that, I wanted the laughter in line for debugging help, the excitement of seeing “ALL TESTS PASSED!” in green in my terminal, the satisfaction of finishing something that two weeks prior had seemed outlandishly difficult, the evening’s embrace as I left the lab for dinner.
As it was, the price of all this was long hours and intense anxiety, but I no longer accepted that price as inevitable. I wished for a discipline where I could be with all parts of my bodymind, efficient and inefficient, in and out of pain. Unlike the counterculturalists of the 1960s, I had no dreams of liberation brought on by transcendental consciousness; unlike the hackers of the 1980s and 1990s, I had no need for computation as my sole escape. I wanted to simply be in my bodymind, as a woman living with trauma and disability, in a discipline I had come to love. I believed it was possible. Despite everything that had happened, I wanted a reason to stay.
It came to me in the form of an email. The department was hiring new responsible computing teaching assistants and was launching a new ethics initiative – a direct response to the critique of digital technologies which had followed the 2016 election and its scandals. I applied to work on the very web development course that had almost squeezed me out, pitching a new curriculum that included teaching web accessibility to students.
In this regard I can say that the concussion taught me: I recognized the price of inaccessibility, and I wanted everyone to know it. Even though I knew nothing about web accessibility, I remembered that navigating the Internet using screen readers had been difficult. I spent two months researching web accessibility and incorporating requirements into assignments, asking students to learn about skip links and alt text and ARIA landmarks. As I did so, I felt a responsibility to my past self bordering on purpose.
Then, of course, the pandemic began.
We all retreated into our screens, suddenly aware of the fragility of our bodies. I did what I’d done many times before: I lost myself in computation. I coded so much I dreamt in color-coded monospace. I noted the refuge that code had once again become.
That same semester, I became a health and wellness advocate in the department. I held open hours, where I tried to help other students get through crushing schedules of schoolwork, TA duties, and simply keeping themselves alive, hearing stories of professors who refused to record their classes or change curricula, and remembered my own experience of accommodation refusal. It angered me how much bureaucracy was still in place, how much students were still expected to function at their normal pace, how much remote learning had upended all of our lives. In each of us, I saw a small glimmer of myself upon return from my concussion, watching support systems strain and fail as often as they succeeded.
I wondered whether departments would bend, whether they would recognize that the workload and intensity of the curriculum was inaccessible not only during the pandemic, but always. From my position on internal committees within the CS department, I realized the answer was no – certainly not enough. Departments continue to prioritize the students who are able to use CS as a distraction, as a refuge, as a backbone of their routine, who can keep up with relentless workloads. Those who need accommodations or a leave of absence are treated as anomalies, only because they – we – are not permitted to be part of the norm, and as a result, are almost always left behind.
This is the tension that remains for me in computing: its status as refuge and its ability to welcome are in direct conflict. I have been on both sides of this tension, have both taken refuge and been unable to do so. Ultimately, I believe that treating computing as a refuge isn’t necessarily bad, so long as it is a choice. But the structures of computing curricula, of departments, of the software industry as they all stand now preclude that choice. Students can either bend to the intensity or be left behind; engineers can hack productivity or they can burn out. I believe we all deserve better. And I believe better starts with acknowledging that if computing can be a refuge, we cannot assume that it will be for everyone – nor should it be. For some it will be just another academic discipline. That is enough.
This past year, I graduated with degrees in computer science and comparative literature. It feels like a triumph because it is, but I am wary of characterizing it as such, mostly because it plays into the language of disability as obstacle in itself. Mine was not a triumph over my injury, though I did have to work to recover. Instead, I triumphed over toxic cultures and outdated academic infrastructure, as well as a calculated disregard for the body that is found everywhere, but especially in computing.
If there is anything to remember, it is that all of our bodies will surprise us. Whether in old age, injury, or illness, all of our bodies will trap us and we will think we want to escape them if we do not already. But the body cannot and will not be transcended; it holds us close. We cannot “go beyond the flesh envelope.”
What can be transcended is the built world – infrastructure, technology, culture. But it cannot be transformed alone. Moving slowly, moving together, we can work to shift the culture of computing as refuge that, in the end, keeps so many of us out. Instead, it can be a pleasant place to stop by, to learn, to take the knowledge to live fuller, more balanced lives – lives which may not even need an escape to a refuge, which can be enough on their own.
Works Cited
- Hedva, Johanna. (2016). Transcript of “My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want it to Matter Politically,” reading and audience discussion. https://sickwomantheory.tumblr.com/post/138519901031/transcript-of-my-body-is-a-prison-of-pain-so-i
- Hendren, Sara. (2020). What Can a Body Do? Riverhead Books.
- Ko, Amy J. (2021). Deconstructing CS Culture – Dr. Amy J. Ko – 2021 IEEE RESPECT Keynote. https://www.youtube.com/watch?v=c8TQ29I8lK4
- Turner, Fred. (2008). From Counterculture to Cyberculture. The University of Chicago Press.
Author
Shira Abramovich
This year, *The Collected Schizophrenias* by Esmé Weijun Wang moved me beyond words. I also read *Disability Visibility*, edited by Alice Wong, and highly recommend it as a collection of disabled perspectives! I also made a delayed discovery of Ilya Kaminsky’s *Searching for a Lost Odessa*, and it is sweet and sad and lovely.