Sleep. Tweet. Take a painkiller. Join a Zoom call. Think. Forget to recharge your cell phone. Breathe. Forget to take your medication. Dream. This paper is invested in small scholarship and messy, incomplete, imperfect paragraphs; in the kinds of work produced by chronically ill bodies in digital spaces during a global pandemic. These micro-essays explore disabled/crip/Mad forms of intimacy that flow between bodies and technologies. These notes merge personal experience with broader conversations, theories, and trends surrounding disability justice, access, and media studies. These reflections on being digital/disabled will be interspersed with photographs and Instagram posts documenting aspects of my experience of pandemic and lockdown life as a trans/nonbinary, disabled, and Mad writer.
While these micro-essays are positioned sequentially, they may be encountered in any order. You can read them all at once, your caffeinated and anxious heart racing against mine; you can read one a day or week or episode of your favourite drama; read while you’re waiting for your medication at the pharmacy or on hold with your insurance company on the phone. Listen with your screen reader or text-to-speech app or have your friend/roommate/sibling read aloud to you. I also want to invite you to share your thoughts through comments and annotations and voice notes: I imagine your ideas unfolding from this text like the leaves of spring trees unfurling and stretching new shoots into the sky.
I spent most of 2020 in my bedroom. Sometimes, I ventured out into the living room to look out the window at the construction across the street. Other times, I closed the blinds so no one could see me. My world became small. In many ways, it still is. Many people in my city have moved on from COVID-19, but I haven't. I have friends and family members who are immunocompromised. I have anxiety. My anxiety often tells me things are life and death, but these days, it’s actually true. I imagine therapists all over the globe staring at their CBT sheets in confusion.
I don't have the time, energy, space, or ability to write a long essay. I've been getting tension headaches from staring at the screen. My wrists and fingertips crackle with pins and needles, buzzing and snapping and keeping me awake at night. I don't have stamina, and to be honest, I never have. I have chronic pain, depression, and anxiety. But it's strange to me that when collectively we are fatigued and scared and lonely, our political and economic systems continue to tell us to work longer and harder and faster—to go back to “normal,” when normal meant throwing away the lives of immunocompromised and elderly people during flu season. When “normal” meant no sick leave. When “normal” has never cared for the fragility and beauty of human diversity and life.
I want to write an essay for those of us who don't have the energy or attention spans for longer articles; for those of us struggling to read books; struggling to stay awake; struggling to survive. I want more crip collections, more Mad and disabled forms of writing and talking and sharing our experiences. I'm writing micro essays. These thoughts aren’t finished, but I think of them as sparks—and if they land on the right kindling, they might just ignite. I hope to intervene in some of the ongoing discussions about digital media that are occurring in the public, private, and academic spheres, conversations that are taking place during an ongoing global pandemic when disabled bodies are both the most vulnerable and the most forgotten. Questions of access, care, and intimacy are being lost, subsumed by narratives of technological progress that emphasize speed and efficiency, as the caretakers of capitalism desperately hold onto a dying system.
My mother started quilting a few years ago; the bright triangles and squares of fabric spilling over the kitchen table. The whir of the sewing machine. I think about the relationship between her quilts and mine—arranging Instagram photographs or tugging at Twitter threads. Sara Ahmed writes that “Feminism is DIY: a form of self-assembly” (2017, 27). Contemporary digital culture can be understood as a form of crafting: we make, post, share, edit, mix, sample, comment, delete, and start over (Maguire 2018; Munster 2006; Poletti and Whitlock 2008). We need to identify the feminist/queer/crip media makers and users who are crafting collective care, activism, identity, community, advocacy, and disability justice through coding or cropping, hashtagging and liking.
While I’d like to share the many individual and collective voices and conversations that have held me together over the last several years, I am wary of making them visible, of drawing attention to the mutual aid work being performed and organized on disability Twitter and Instagram—after all, these corporate spaces have never been safe for marginalized bodies, and harassment and doxxing are real threats to our digitally-augmented communities. Instead, I’ll point to the more public-facing media projects that work with and through digital platforms and social media, like Chiara Francesca’s textual and visual work on poverty as violence, Annie Elainey’s YouTube channel on disability, queerness, gender, and race; Fady Shanouda’s podcast “Disability Saves the World”; Alice Wong’s Disability Visability Project; Jessica Kellgren-Fozard’s YouTube channel on chronic illness and queerness, Squinky, Jess Marcotte, and Kalervo Sinervo’s critical game “Rest Rest Coalesce!” We play, read, listen, like, comment, share, and participate in these conversations that become communities, in these diverse practices of care work.
DIY patchwork feminism is a form of small scholarship: hemming the edges of frayed paragraphs and half-finished ideas faded from wear and tear before arranging each piece on the page. Stitching these messy, micro thoughts together. Throughout this process of working with scraps, I want to hold on to Alexandra Juhasz’s concept of “cut/paste+bleed”, which emphasizes “attending to the bleed: where it hurt, where we helped, how we felt and knew and learned” (Juhasz, Getnick, Sakar 2018, 225).
Where do we make art? Where do we perform research? What are those spaces like and what is the relationship between our bodies, spaces, and the art or knowledge we create?
I've been spending a lot of time in bed. The bed feels like a particularly noteworthy crip space. Johanna Hedva writes “Sick Woman Theory” (2016) from bed. Leah Lakshmi Piepzna-Samrasinha, author of Care Work: Dreaming Disability Justice, has a section entitled “So Much Time Spent in Bed” (218, 180). What do we do in bed? Sleep, lie awake with our thoughts; think; write; text; masturbate; have Zoom calls; have phone calls with our doctors; teach classes; create art; watch YouTube; care for ourselves; care for others. What kinds of community, protest, and intimacy are available to those of us who are chronically in bed?
I want to draw attention here to Hedva’s insistence that “The most anti-capitalist protest is to care for another and to care for yourself” (2016). Lying in bed can be a form of protest, resistance, of struggle. A potential site of revolution and creation.
I want to know where other disabled media makers and scholars and writers and colleagues are doing their work. In their home office at 8 a.m., in bed in the sweatshirt they wore all week, with kids and dogs crying or screaming in the background? Where are we? Where do we create? How do these spaces shape our work? What do they teach us about society, access, and illness?
I tap at the keys in my flannel plaid pajamas to the sounds of construction and the pounding of my anxious moth of a heart.
Several scholars have already critiqued the academic essay as a form of ableist settler composition, built on colonial Western rationalism, logic, and linear thinking and argumentation (Price 2011; McRuer 2006; Tranksen 2005). Traditional forms of research and writing privilege the neurotypical, able-bodied, sane, masculine, settler scholar. Yet as an academic community we have largely failed to reimagine the forms of knowledge sharing that we could create and circulate. There are of course exceptions: arts-based research, for example, creative writing, and shorter form pieces are often accepted by formal publications.
But what about the important conversations happening on Twitter and TikTok and YouTube? What about the electric ideas shared over Skype or scribbled in our journals? I would love to see a collection of disability media scholarship that was entirely made from WhatsApp voice notes or Instagram photos and captions. I would love tweets to be cited in bibliographies and there to be space for emerging ideas, casual prose, bullet-point lists, creative design and artwork of all kinds in academic conversations. As universities turn to digital media and teleconferencing technology as teaching and learning tools in the pandemic, I'm still waiting for the publishing field more broadly to recognize the valuable contributions to scholarship made in non-traditional formats.
Mastodon, Twitter, Discord, Slack, WhatsApp, Instagram, midnight phone calls and shared Google Docs. The ways we connect with each other across vast geographical distances, in our pajamas, on our cell phones. We’re connecting through Commonplace, a digital publication, during a pandemic where chronically ill and immunocompromised people are the most at risk. We’ve been isolating, distancing, and quarantining. We’re anxious, depressed, fatigued, and in pain. We have valuable experience and insight to offer.
I’m interested in the kinds of knowledge being produced in the digital sphere by communities—by disabled people ourselves, connecting, disagreeing, and teaching one another about the complexities of our lives. What kinds of crip scholarship could be produced if we moved away from the traditional academic essay? What kinds of scholarship are already being created in non-traditional—perhaps creative, conversational, and collaborative—ways?
Traditional scholarship and composition have always privileged the able-bodied, which is not news to any of us, but we’re at a particular point in history where conversations of exhaustion, the body, digital media, and labour are in the foreground, and I’m deeply invested in centring the disabled body and producing crip forms of scholarship and knowledge.
As a community, as a collective, and as a society, we need to be more creative about the kinds of work we value as work.
I talk and write and think about rest a lot. Sometimes, I mean it. Sometimes, I know I’m full of crap. I have deadlines and the rent is due; there is no rest under capitalism. I convince myself that lying in bed without writing or building or planning or having a Zoom meeting is a waste of time, even when I’m bent over with menstrual cramps and vomiting, even when the chronic pain flares up in my lower back and I reach for my cane; through orthodontic jaw and tooth aches; tension headaches; muscle spasms; stomach pain; night sweats; nightmares; insomnia. The buzzing intensity of panic attacks and the dull ache of depression. My body is an orchestra of pain—synapses snapping along my fingertips, sensation slipping into the tendons of my wrist, twisting my abdomen, choking my lungs.
During lockdown I slept. I dreamed. I turned off my alarm and laid in bed past eleven, until time unhooked its claws from my soft body. I napped; imagined; listened to piano covers of pop songs on my phone. I gifted myself softness in the form of fleece-lined sweatpants, smooth bedsheets, flannel shirts that hang loosely over my shoulders and torso.
I gave away anything that hurts. I have enough hurt.
I spent most of my PhD (2015-2020) advocating for digital access to resources, conferences, and lectures. I wrote and spoke against popular claims that social media cause depression, narcissism and addiction, pointing out the sexism and ableism of these claims, explaining that many disabled people rely on social media for connection and community, and arguing that social isolation is a product of late-stage capitalism and job precarity, not a side-effect of TikTok. However, in the rapid shift to online during the COVID-19 pandemic, it’s become important to clarify some of these points: for example, that Zoom meetings are not inherently more accessible than an in-person meeting. Access means something different to every person, and no single technology or format is universally accessible. The more formats you have available, the more accessible your class, group, or material will be.
There will always be a role for hard copies and physical presence, for radio and letter writing. Always. And this brings me to the postcard project. At my thesis defense in the summer of 2020, I offered to send postcards to anyone who wanted one, with a techno angst poem written on it. Several attendees said yes and send me their mailing address. I spent time picking out the right postcard, and then wrote a series of angsty poems about cyborgs, screens, and coltan mining. I also started up a postcard correspondence with several friends across Canada, the UK, and Jamaica. There are excellent scholars who study the history of letter writing and correspondence, and I am not one of them. But I think that sending physical postcards is a practice of relationship and community-building, slow conversation and dialogue, an art practice, and a form of collective care.
I’m interested in the kinds of analog technology and non-digital practices we use as disabled people during a pandemic to connect, communicate, advocate, and care for ourselves and one another. A couple other examples from my personal life: I used to rely on the website Habitica to make to-do lists, and now I use post-it notes. I bought a polaroid camera because I was too anxious to go to the store to get my photos developed during COVID. Sometimes when I send mail, I’ll add a polaroid of my cats in the envelope, which feels like analog Instagram.
How do we create access offline? What tools, tech, methods, and practices do we use to care for ourselves and others during a pandemic? What is the role of analog tech in the digital age?
If you could, would you rewind the last three years like a ‘90s VHS tape?
To 6 a.m. alarms and office Christmas parties and thousands dying from the flu? To not smiling with your eyes and 500 student lecture rooms and clothing that never fit us quite right? To crowded shopping malls and road rage, gym memberships, and $300 matching bridesmaid dresses?
Are those the qualities that make us a civilization?
If we experience time as linear, then we would have to admit that there is no going back; only forward; only crawling toward a future that has yet to be decided. Can we move forward differently? Can we create different worlds, shedding debt and prisons and guns and landlords like an insect shedding its exoskeleton?
Could we be new?
Before the mask, I was masking; performing with a practiced smile, forcing down the discomfort, anxiety, panic, fear, hurt, and pain. Playing a role. Before online classrooms, I was flinching under the flickering fluorescent lights, head aching from the chemical and perfume scents, animal heart beating too fast when the crowds swarmed around me and I thought I was going to suffocate to death.
When will this body be enough?
Without the structure of the formal essay corseting my thoughts into an hourglass concept, what shape could my ideas grow into? What if we cultivated our knowledge like the succulents on our windowsills or the mold creeping along the tile in the bathroom?
When will our words be good enough?
Without the weight of a white masculine bibliography tethering these sentences to the earth they’ll never form a cement foundation, but their absence makes me feel light—like a bird with hollow bones. So maybe I won’t build; maybe I’ll just drift, like the dandelion seeds I used to wish on as a child.
Maybe the exhale of a trans child over a dandelion is worthy of attention.
Good / enough is enough.
Ahmed, Sara. 2017. Living a Feminist Life. Durham: Duke University Press.
Hedva, Johanna. 2016. “Sick Woman Theory.” Mask Magazine, January 19, 2016. http://www.maskmagazine.com/not-again/struggle/sick-woman-theory.
Juhasz, Alexandra, Brian Getnick, and Iaila Shereen (VJ Um Amel) Sakr. 2018. “Ev-Ent-Anglement: Script to Reflexively Extend Engagement by Way of Technologies.” In Bodies of Information: Intersectional Feminism and Digital Humanities, edited by Elizabeth Losh and Jacqueline Wernimont, 203–29. Minneapolis: University of Minnesota Press.
Maguire, Emma. 2018. Girls, Autobiography, Media. London: Palgrave Macmillan.
McRuer, Robert. 2006. Crip Theory: Cultural Signs of Queerness and Disability. New York: NYU Press.
Munster, Anna. 2006. Materializing New Media. Hanover: Dartmouth College Press.
Piepzna-Samarasinha, Leah Lakshmi. 2018. Care Work: Dreaming Disability Justice. Vancouver: Arsenal Pulp Press.
Poletti, Anna, and Gillian Whitlock. 2008. “Self-Regarding Art.” Biography 31 (1): v–xxiii.
Price, Margaret. 2011. Mad at School. Ann Arbor: University of Michigan Press.
Transken, Si. 2005. “Creativity, Cultural Studies, and Potentially Fun Ways to Design and Produce Autobiographical Material from Subalterns’ Locations.” In Auto/Biography in Canada: Critical Directions, edited by Julie Rak, 145–72. Wilfrid Laurier University Press.