This week, I virtually attended the Association of Canadian Archivists’ 2020 conference, “Seeing Archives Differently.” It was originally scheduled to take place on Coast Salish territory at the University of British Columbia in mid June. ACA was admirably proactive as COVID-19 reached North America, developing a fully virtual program that included subsidized registration for students and precariously or unemployed professionals. The virtual conference took place on a series of Zoom calls coordinated through the event management app Whova.
During my introductory remarks for a plenary on archives and climate change, I said that I was grateful for the opportunity to participate as a disabled person from my own bed. I argued that ecofascism seductively frames the needs of marginalized groups in opposition to environmental action, and that we should be vigilant against the temptation to purchase a “utopian” future with the bodyminds of disabled, QTBIPOC, and other marginalized archives workers. If I’d had more time to expand on my short remarks, here’s what else I would have said.
In recent years, I’ve spoken (or tweeted) in passing about some of the ways I’ve been disabled by traditional academic conference models. I am intentionally using the verb tense “disabled.” Where the medical model of disability argues that I am rendered incapable by my own broken and deficient body, the social model of disability emphasizes that we are disabled by the hostility and inflexibility of our environment. The social model reminds me that pain and discomfort is not the inevitable price of my conference participation, but a predictable outcome of the facilities, schedule, and amenities chosen by the planning committee. Similarly, my exclusion is perpetuated and sustained by the unspoken demands of academic professionalism.
You don’t need to know the names of my diagnoses. These clinical terms won’t tell you anything meaningful about my experiences as a person disabled by academic conferencing norms. What I can tell you instead is that sometimes I run half-marathons, win karate tournaments, and hike up mountains. Other times, I’m exhausted by the pain and effort of walking to the mailbox. Some days I can hold Warrior III for minutes on end. Other days, I lean against the wall when I shower so I don’t fall over. I can speak in the UN General Assembly hall to an audience of 10,000 strangers, but I can’t watch a movie in a theater unless I’m seated in the very back row. I can drive 1,000 miles solo in two days, but I can’t process a speaker’s remarks unless my body is moving. I can forge blades by hand, but I can’t always cut my own vegetables. Sometimes, lights are too loud for me. Sometimes, the sensation of another person’s body brushing against mine is an electric shock.
Sometimes I can’t eat solid food for the better part of a week. Sometimes I have less than 20 seconds to find a toilet. Sometimes my joints hyper-extend and fall out of place. Sometimes I’m so stiff that it takes me minutes to stand up. Multiple surgeons have told me I heal better than anyone they’ve ever seen, and yet I cannot prevent catastrophic infections from taking hold in my body. I’ve held many friends, family members, and strangers through some of the darkest moments of their lives. I’ve also had suicidal thoughts on nearly a daily basis for 20 years. This shifting landscape has been my home since 1988. Finding joy here — surviving here — requires a daily willingness to soften, adapt, and change.
Academic conferences typically leave me exhausted, in pain, and inevitably sick. I ride home bleary-eyed and aching all over. I spend the next day in bed with a heating pad, an eye mask, and ear plugs. I usually have to miss at least one day of work because of fever and inflammation. I have a doctor-prescribed heated eye-mask for the days when opening my eyes causes shooting pains. Sometimes, my body manages to suppress all of this after a few days of rest. If not, I’m laid out for weeks with pneumonia or bronchitis.
I endure all of this — for now, while I can — because I generally love the conference experience. I miss the electrifying energy of bearing witness to public testimony, the thrill of catching a friend’s eye in the audience, homecoming celebrations over hot food, exploring new metro systems, visiting weird local museums, eating food other people have prepared, and having an excuse to completely detach from work and family obligations.
I mourned for all of this as ACA 2020 moved online. And yet, I was able to participate in the conference on a level I haven’t enjoyed since probably 2015. I was able to:
- Control the lighting, humidity, air quality, temperature, and volume of my environment
- Easily access and prepare food that met my metabolic/digestive needs on a schedule that served me
- Change positions, move around, and flow through stretches as I listened to speakers
- Wear clothing that was comfortable and supported freedom of movement
- Manage pain and inflammation by laying in bed with a hot pad, soaking in a salt bath, slathering myself in arnica lotion, and reclining with my legs propped up on pillows
- Take brief restorative naps as needed, even in the middle of a panel
- Manage anxiety and trauma responses by laying under a weighted blanket or performing a high-intensity cardio circuit between sessions
- Manage my bodily functions in my own bathroom, without embarrassment or delay
- Monitor my vital signs for infection and directly control my exposure to infectious agents
- Visit my regular doctor to address a pressing issue
- Simply be in pain or discomfort without explanation or excuse
Some of these coping mechanisms are also available to me during a traditional conference, but they come at a higher cost. The culture, schedule, and built environment of traditional academic conferences demand that I take on these costs alone.
During sessions, I often sit on the floor against the back wall under the pretense of being near an electrical outlet. Sitting on the floor actually allows me to stretch and adjust my posture without distracting others. My lower profile also means people are less likely to watch and misinterpret my facial reactions; I can grimace at a squealing microphone, grit my teeth in pain, or close my eyes against the fluorescent lights without trying to look professional.
From this position, I can make it to the nearest restroom in time to prevent an embarrassing emergency, assuming I have mapped out all the bathrooms ahead of time and I get very lucky. I can take a nap during a traditional conference, but it means either a 10 minute walk to a friend’s hotel room or a 30+ minute trip to a separate location where I can meet all of my care needs. Once I leave the conference venue, I am usually too exhausted or emotionally drained to return. I can join a conference session live and in pain, or I can watch a recorded session alone, long after the event has ended.
Throughout ACA 2020, I imagined what it would be like to merge these conference experiences. If all conference sessions were live-streamed, I could retreat to a friend’s home or hotel room with a hot pad and still live-tweet the session or join the Q&A . If the conference facility had low-light spaces to sit and lay down, I could take breaks between sessions instead of needing to leave. If conference venues had regular snack bars with low-FODMAP options, I wouldn’t need to bring a backpack with my own food or skip conference sessions to eat. How much longer would I be able to enjoy social gatherings if they had chairs and benches? What would it be like to travel in a foreign city without a massive suitcase for all my specialized foods, equipment, and toiletries?
As I work through these issues in my own life, I am freshly grieving the loss of Mark Greene (three years ago this week). I did not have an opportunity to know him as well as he deserved, but we corresponded regularly over the course of four years. In one of our final conversations, Mark and I spoke at length about the experiences of conferencing while disabled.
“Unfortunately, I am no longer able to suffer the toil and humiliation of trying to travel long distances by public accommodation,” he once wrote to me. I shared reflections on my own conditions and how difficult I’d found the Society of American Archivist’s 2015 conference in Cleveland, where the convention center programming required participants to travel long distances between sessions and even longer distances between venues. Together, we lamented how exhausting it was to press for accommodations and inclusion year after year, and how humiliating it felt to be excluded from or pushed out of spaces and roles that we loved.
I wish he were here to review this essay. I wish he were here to see the emergence of SAA’s Accessibility and Disability section. I wish his career had not cost his body so much. I grieve for him and I grieve for so many colleagues whose participation is obstructed or marginalized by a one-size-fits-none conference model. I grieve for everyone disabled by rigid conventions that will not expand or shift to hold us. It is bittersweet to see so many “impossible” requests made manifest in this time of pandemic. We’ve seen what sufficient political will can make possible, so let’s make it possible for everyone.