Editor's note: This article references the work of L'Arche founder Jean Vanier, who was accused by several women of sexual, emotional, and spiritual abuse. L’Arche International has condemned Vanier’s actions. We recognize the courage of the women who have spoken up and share this as context for Vanier's ministry and legacy.
Unlike almost everyone I know, quarantine has barely changed anything about my daily life. If anything, as a self-identifying disabled person, it has made the way I have been living my life feel more bearable, manageable, explainable. In this reverse expectation of living — where many people are struggling to find ways to deal with shrunken liberties, limited capacities, and constant anxiety that I have been forced by disability to live with — it feels like the world is somehow in solidarity with what I have been feeling all along. In solidarity, I therefore want to share some aspects of my life that have been redefined by disability that might now apply to others.
For almost two years now, from when I was diagnosed with various mental health disorders and learning difficulties, I’ve effectively been unemployed and out of school. I’ve been trying to figure out what it means to live with all these diagnoses: what combination of medication works best, what time to take it, what form of therapy with which therapist works best, in what culture and home environment to live in, etc. Many days, just making it to the grocery store feels like an achievement. The way I live felt so small and even shameful compared to the “regular and productive” lives of work, study, or family that I felt other people lived. No matter how much I tried to not compare myself to others, it still felt frustrating to see how limited my ability was after so much time, effort, and investment into recovery. The world used to always feel too fast, too productive, and too high intensity for me to ever really participate.
But quarantine life requires individual and collective obligatory isolation and idleness. In stark contrast to what a capitalist, productivity-oriented society demands, somehow amidst all this pandemic frenzy, I feel more able to fully breathe and be. I learned to slowly adjust my expectation of productivity as not primarily in terms of work output, but also in terms of healing and maturation.
Just as it takes many years of full-time academic study and paid work to build toward a “career”, it also takes many years of full-time inward study and emotional work to heal from trauma and learn to live with disability. Yet, adjusting to a “new normal” was not only difficult because of new physical barriers that I had to accept about myself, but also because it required an enormous amount of creativity and reconsideration about what it means to participate in an ableist world as a disabled person.
An integral way for me to learn about my “new normal” was through online spaces and communities. This is because a physical element of my psychological disabilities is paralysis and exhaustion, meaning that I often feel a physical-like barrier pushing against me when leaving the house or even my bed. On days when I was too tired or anxious to leave my room, being still able to access people, networks, and communities online, rather than remaining in complete isolation, has been as helpful as medication and therapy. In particular, Facebook groups that are publicly accessible to self-identifying individuals like Subtle Asian Mental Health or Progressive Asian American Christians provide me with a space to explore cultural or religious-specific forms of trauma in a safe way, especially in times when my immediate physical environment feel overwhelmingly and unbearably white, male, and inaccessible.
Meeting in person is not only difficult because of physical exhaustion, but also because of social expectations. For example, “grabbing a coffee” is perhaps the go-to social interaction between adults. This social activity usually entails meeting for a set period of time in which people exchange what has happened in their life since they last met. While getting coffee may seem like a casual and innocuous thing, it remains an activity largely inaccessible to me because I don’t have a way to meet this social norm. To friends who know about my diagnoses, I don’t have much to say about what’s been happening in my life because it’s pretty much the same since we last talked; to those who don’t know about my diagnoses, it’s very awkward and exhausting for me to try and explain.
Instead, I set up a private Facebook group for close family and friends to update them about what’s happening for me — regarding medication or therapy changes, how I’m feeling day-to-day, or small wins with cooking or gardening. That way, I don’t exhaust myself repeating information; they can just check for updates. While it often feels weird to have much of my personal reflections and friendship developments mediated by an online blog/diary, its efficiency of sharing the weight of burden and trauma with community has drastically reduced the amount of anxiety and isolation that I often used to feel, especially in moments of serious crises.
This is not to say that online worlds and presences should simply replace in-person contact. After working with adults with learning disabilities at a L’Arche-inspired community, I have come to agree with L’Arche founder Jean Vanier’s understanding that “the Word became Flesh” means that God chose to use the body, particularly weak bodies, as the primary access point for human understanding of God’s self. But I don’t think this emphasis on the body means simply that physical presence is important; I imagine too many of us can attest to how mandatory church or family gathering attendances have led to less rather than more love.
Rather, I believe the emphasis of physicality at L’Arche means that being bodies together relies on a centrality of mundaneness, familiarity, and repetition — through meal preparation, eating together, dishwashing, playtime, or TV watching — rather than perceiving the most important form of interpersonal interaction as direct communication (the Word), which many neurotypical people may consider to be a more “normal or adult” way for humans to interact together.
Despite the intense physicality that the life of L’Arche embodies, I believe that certain aspects of this physicality can be expressed digitally. A rather embarrassing and nerdy personal example is that I regularly follow several pro Age of Empires II players and casters on the streaming platform twitch.tv. The scene is almost exclusively men, many from Europe or North America, but also excellent players from China, Vietnam, and Latin America. Like at L’Arche, the comfort and “physicality” comes from a sort of mundaneness, familiarity, and repetition of experiencing same type of interaction with the same few players day in and day out. I pop in and out of streams every day to watch the same few players play the exact same game over and over again with each other.
As viewers, we constantly see and hear the same vocal reactions and cues, laughing together in livestream chat, for hundreds or thousands of hours, feeling a lighthearted comfort, familiarity, and kinship. Despite the community being online, there is a feeling of proximity, closeness, comfort and acceptance that is genuine and real, which I know has helped more than just me through difficult mental health periods.
I imagine many others feeling similarly when following Influencers who document mundane aspects of their life, or others who chat frequently in online forums. Though I understand how this type of online engagement may be seen as antisocial, obsessive, or overly one-sided, these forms of online engagement may also be the spaces for people who are otherwise excluded from “regular” forms of social interactions. At times when it feels like I can’t participate or contribute to any physical space because of disability, finding any avenue or space through which one feels able to participate is, I think, something to be encouraged.
Yet despite all of these desires to participate in alternative visions of society, I have consistently felt difficulty participating in leftist politics and imaginations. Though I am personally aligned with many leftist values, I can’t help but feel their idealist visions of community and solidarity-building among marginalized groups are too abstract, alienating, and inaccessible. Although I do identify as a woman of color and share in those struggles, I also have disability needs that often mean I’m stuck with just trying to do whatever I can to get through the day. Too often, I have felt judgment from leftist imaginations on my need to simply focus on the immediate and tangible, which for so many people with disabilities is literally all we can afford to think about.
Quarantine life has brought the immediate back into focus as the basis of reality that we live in. While I hope for the pandemic to end and for less lives to be put in danger, I also hope that the experience of quarantine, which has forcibly and suddenly shrunken our individual and collective freedoms and capacities, can be an opportunity for able-bodied folks to think about how this is, has always been, and will always be the “normal” that people with disabilities must live with. For as much difficulty and frustration that many people have felt, if quarantine can teach us to better cater to and accept people who cannot help but live what is deemed to be relatively small and unproductive lives, then I think we can all live with that.