This article is published in issue 40.2 of BlackFlash Magazine with the generous support of EQ Bank. Get this issue.

In BlackFlash Expanded’s inaugural issue, released during the Omicron wave, guest editor Christina Battle questions the art sector’s uncritical push to online programming and calls for artists, arts workers, and arts organizations to work beyond a default acceptance of Internet communications as we know it. She asks:

What does it mean that so many arts organizations have fuelled content on corporate platforms like Instagram and Facebook, while those same platforms simultaneously sit at the crux of society’s misinformation, challenging democracies and fuelling the rise of white supremacy and fascism? Where is the critique of our engagement with these platforms as a sector?

Quoting James Bridle’s New Dark Age: Technology and the End of the Future (2018), Battle reminds us of digital infrastructure’s significant physical presence and environmental impact. Despite her sharp critique, she emphasizes that her point isn’t to advocate for “a sector-wide retreat from … [the digital] at large,” but to think about “how we as a sector might advocate for using [digital space] in ways that offer care and critical consideration alongside it.” Responding to Battle’s prompt, I offer reflections and recent learnings on the relationship between lived experience, self-advocacy, and hybrid (i.e., digital and in-person) community building in the arts sector.

I begin by reflecting on my lived experience as an East Asian spoonie daughter of disabled settler-immigrants, speaking to how first-hand encounters with kinship, community, and education can inform and be informed by our digital lives. I consider how this lived experience speaks to systemic barriers but also to possibilities of change, and how it has contributed to my program design approach as an arts worker and my shared learnings from a recently closed, Turtle Island-wide digital project I led at the Toronto-based new media artist-run centre InterAccess. Finally, I share a few remaining thoughts on the current cultural-digital landscape and some leading ideas shaping it.

Lesson #1: Lived experience is technological insight.

In my mind, a potent image of my late father involves a computer. He’s staring at the blue-white glow of his CRT monitor, sitting in his wheelchair, turned away from me. The visual memory eclipses his face. In an uncanny parallel, I look at a screen whenever I want to remind myself of his features. In both circumstances, a digital display facilitates remembering.

In 1993, the first browser with inline image capabilities was invented, and I was born. Two years later, during the dot-com boom’s beginnings, my father received a Young-Onset Parkinson’s disease (YOPD) diagnosis. My father was the first to show me how remote electronic access can serve crip, mad, and access-barred communities. As his physical abilities changed, he increasingly relied on and enjoyed online/remote forms of community and personal activity. My dad—ever the social butterfly, lifelong learner, and photography enthusiast—spent hours online sending emails to his friends (I first learned about e-cards from my dad); researching camera equipment to add to his wish list; watching videos; playing music; and sharing digital media with friends through Ofoto, Shutterfly, Flickr (which later became Yahoo! Photos), PhotoBucket, and Picasa (now Google Photos). When he could no longer use a computer, phone, or tablet, he asked for assistance, and we clicked on buttons, scrolled, and browsed for him. I remember his excitement when I gifted him an iPad; it meant he could do much more while in bed. 

The last time I saw my father before he died was through a video call organized by his long-term care home during the pandemic, which seems sad but also privileged and fitting, given two observations. Firstly: most nursing homes were so overwhelmed by the pandemic they could barely meet proper long-term care standards, much less facilitate video calls. Secondly, I had spent the entirety of my formative, adolescent, and young adult life watching my father maintain his hobbies and social relationships through remote and digital means. In this latter context, that final video call provided a bittersweet narrative closure.

My own chronic illness has taken me through a journey of relying on remote access and digital refuges. It was on Facebook notes that I first tried to put my ongoing grief and burden of family caregiving (a sadness and responsibility so heavy it used to feel difficult to breathe) into words. The online experience supported me with a social media-based, digital version of body doubling. Even when physically alone, I was with people. In moments of severe depression, immobilized in bed, I stayed connected to the rest of the world and its goings-on with minimal eye and finger movements. Through Facebook, too, I first encountered disability justice via Mia Mingus and Alice Wong, whose writings were especially groundbreaking and freeing for me when I lived in a majority East-Asian-conservative environment saturated with respectability politics and distaste for anything that didn’t fit the model minority model. 

When my depression hit an all-time low from 2016 to 2019, online activity kept me connected to the communities that mattered to me. It helped me stay updated with the sector, a necessity for anyone working in cognitive labour-heavy and creative industries. Still, I was so low energy, I couldn’t finish the final requirement for grad school, a Major Research Paper. Stuck with an unfinished degree and student debt snapping at my heels, I started to spiral. I had hardly enough spoons to brush my teeth, I lived in a mouldy apartment with no tenant rights, and my father was dying. How could I find the energy or time to step into a white cube to philosophize about art? It felt like I couldn’t write or read an email to save my life. During these times, I learned the hardest lessons about surviving in capitalism: that sometimes, what a person needs is for someone to send them money to help with securing new housing, without the paperwork, the credit check, the grant proposal; that a friend doing your dishes can be better than any thoughtful gift; and that working entry-level positions in the hospitality sector did more for my racialized spoonie survival than reading Marx and waxing poetic about “acts of care” ever could. 

The truth about my art school experience in both undergraduate and graduate settings is that I spent most of it dependent on digital documentation and practice in order to save my energy from long commutes and taxing in-person visits to galleries and libraries. My in-person experiences were reserved for class participation requirements (which I often failed or passed by a hairline, in many cases) and barely staying afloat otherwise, financially and mentally. It’s these experiences that I return to when I think about digital access as an arts worker supporting artists with creative, community, and professional development. If art is about life, digital art should engage with how digital technologies and lived experience collide, co-exist, and wrestle with each other. And if artists centre lived experience in their practices, arts workers must assist them by developing compassionate but responsible and critical support structures for cultural practice. As a counterpart and accompaniment to our in-person and analog world, digital technology reflects, shapes, and is powered by our material existence. To remember this digital-analog dynamic is to avoid the pitfalls of overzealous luddism and technophilia alike.

Lesson #2: Digital labour is hidden labour.

In October 2020, the month my father passed, I began working as the Education and Outreach Coordinator at InterAccess. After struggling to survive in the arts sector with an unfinished degree so recently, working a full-time arts administration job gave me a dual sense of clarity: I was learning about an organization’s parameters and muscle memory internally, but the feeling of being shut out from the sector was still fresh; the urgency to make organizations work for the artists and arts workers they marginalize felt personal. 

One facet of my job involved developing and delivering skill-building workshops for artists. By April of that year, InterAccess had switched to online programming in response to COVID closures. The Fall 2020 education line-up, programmed by Cléo Sallis-Parchet, the outgoing Education and Outreach Coordinator, included a broad range of hands-on workshops hosted over Zoom. One of my first major responsibilities in the role was to host these events. Facilitating these sessions was both inspiring and instructive. I saw hands-on technical skill-building combined with artistic-cultural discourse in ways I hadn’t experienced elsewhere. I was likewise inspired by the peer-to-peer learning model that previous Education and Outreach Coordinators and studio members had implemented in the studio and workshops. I became excited about people with arts and humanities backgrounds coming together and learning from people with technical expertise and vice-versa. And I felt excited to have all this happen online—a place where I, a chronically fatigued and ill person, have often found refuge from the tiring demands of in-person learning.

Nonetheless, challenges appeared at the outset, and more became evident as I took on the responsibility of program design. In my new role, I faced difficult questions about the digital divide, tried to work around unstable Internet connections, tested and analyzed workarounds, fought the finickiness of the tech stack, varying software and hardware requirements, and planned obsolescence. I learned about the necessity of breaks for participant screen fatigue, even as my myopia has increased by two degrees over the past year, resulting from my failure to implement these breaks for myself. I realized, as well, the lack of resources for online-specific workshop development: artists often came to me asking for guidance on how to adapt their content to online settings. I tried juggling the hidden subtleties and labour behind proper digital community-building and knowledge stewardship; I intimately learned how complex questions about ongoing consent, community review, and remuneration are embedded in the act, storage, and distribution of event recordings and their accompanying captions, transcripts, and notes. Above all, I came to know the nuances and significant labour involved in making digital programming accessible, culturally specific, and impactful. If my experiences before this position taught me about the interconnectedness of lived experience, digital life, and cultural community, working at InterAccess taught me how much I have yet to learn from other people’s first-hand experiences and what it means to support others at an organizational level.

However, as valuable as this learning process was, I was burning out. I felt like I had no time and support for documenting or applying these learnings in a concrete and sustainable manner. I felt alone and like I had no resources or time to articulate my struggles or learnings. So, when the Canada Council for the Arts launched their Digital Now funding program in Spring 2021, I jumped at the chance to articulate and gather support for the changes I wanted to make.

Lesson #3: Losing momentum is necessary for changing direction. 

Early on, I knew I wanted the proposed Digital Now project to platform the new media excellence and capacity-building approaches of Black, Indigenous, and disability justice (BIDJ) communities. From the Independent Living movement and Black Panther organizing to Idle No More and Black Lives Matter, BIDJ models of cross-cultural, horizontal organizing and thinking exemplify best practices in navigating network protocols for mutual aid, survival, and success. The resulting Digital Now project, “Rhizomatic Pedagogies” (“RP” for short), was thus envisioned to platform new media excellence in and promote technological capacity-building for BIDJ folks, using a two-pronged approach consisting of:

1. a closed cohort seminar series for BIDJ-identifying artists and cultural workers; and
2. an accompanying public program.

During the grant-writing process, I built a research, development, and training (RDT) phase into the beginning of the project. The RDT phase would involve preliminary research about new media innovation in the target communities, project-relevant training, and consultation with BIDJ-identifying subject matter experts. At the time, I had no idea the RDT phase would end up taking up over 75% of the project and that programming would end up taking a back seat. I naively underestimated the work required to platform and support Black, Indigenous, and Disability Justice communities meaningfully.

Measured against the timeline and deliverables promised in the grant proposal, the RDT process was painfully slow. Listing all the targets in the grant and dreaming up its direction had been comparatively easy: the closed cohort program would be asynchronous to accommodate time-strapped and low-energy folks and account for the digital divide; the cohort members would be paid to receive new media training; all (if not the majority) of the project funds would be dedicated to people who identified as Black, Indigenous, and/or part of a disability justice community; and all events would have captioning, note-taking, recordings, and transcripts available. Once the research, training, and consultation began, I realized the lack of supportive frameworks for the project. Even beginning the consultation process was difficult: what questions and prompts would we use? How could we ensure that the consultation did not result in findings and insights that already exist in open-access resources? How could we create an accessible and equitable space for consultation? The gaps and complications unfolded exponentially. We lacked community guidelines for transformative justice, harm reduction, conflict resolution, and cultural knowledge stewardship. Our accessibility policy covered the bare minimum related to our legal obligations to provide accommodations. Our shortcomings in existing capacity, care, and consideration for what it meant to support intersectional communities felt heavier and heavier as I proceeded through the RDT phase. 

Looking into asynchronous programming and approaching it from an Indigenous cultural knowledge stewardship framework, for example, I saw the glaring insufficiency of existing approaches to documentation and recording. Asynchronous programming can eliminate barriers for communities facing challenges such as limited Internet access, inflexible schedules, or low energy. This is an accessibility-focused issue. But to offer asynchronous and accessible programming, one must have detailed recordings and documentation. Contracts at art organizations don’t commonly explore the implications of recording events in-depth; many lack considerate clauses about confidentiality, sacred knowledge, personal and vulnerable sharings, and proper citation. Alternatively, some organizations default to another extreme, not recording at all, because they’re unsure how to engage knowledge stewardship’s complexities. What would implementing suitable cultural knowledge stewardship protocols into our recording and documentation process look like? What would it mean to support this intersectional relationship between culturally specific—especially Indigenous—knowledge-keeping and access issues for disabled communities? Conversations with community members and research-based findings from the RDT phase suggested that we needed to completely rethink our approach to documenting events, rewrite new contracts, pilot new policies, and develop new participant and contributor onboarding processes.

I’d be lying if I said these questions didn’t exhaust and disorient me. In fact, they caused significant delays to project deliverables. But, in retrospect, it’s delays and obstacles like these that remind us that high-speed, high-volume output isn’t everything—and that stopping or moving slowly can help us uncover new directions for care and consideration.

Conclusion: Digital relations are material relations; they are finite and laborious, with limited spoons.

I stare at the screen, my eyes straining to focus and my shoulders and back flaring up in chronic pain from desk work and too much time on my phone. But when I remember the work of the racialized, Black, Indigenous, Queer, Trans, and Disability Justice advocates I know and have learned from, who have used digital technology to supply rather than deny people of their bodily and psychological needs, to foster community and social connection that materialize in-person, when I remember the ways I stayed alive because the online world reminded me I am not alone, I realize we need not fall victim to the capitalist myth of profit-driven limitless space and infinite, shapeless labour.

If spoon theory helps abled and chronically ill people arrive at a mutual understanding about the limited energy of a person impacted by disabling circumstances, I wonder what it can do for our thinking around collective care and community, in and out of the digital world. After all, spoon theory is a metaphor for limited energy as much as it is a tool to make hidden and personal challenges tangible to our peers. In a sector rife with burnout, perhaps it’s time to be honest with each other about the spoons we have, individually and communally. Maybe the question is not about how spoon theory defines our incapacity but how it defines our need and capacity for resource sharing and interdependency. Perhaps the limits of our energy are not dismal markers of failure but important demarcations for where we want to focus, prioritize, and sustain our collective power.

As arts workers, how do we ensure that our increasingly digital forms of communication and the demands of technological acceleration do not erode and strain us and the communities we serve? Based on what I’ve learned recently, I’m inclined to say the answer necessitates a recognition of two overarching truths. First, digital practice is physically taxing and laborious, with significant analog barriers, not only in the sense that Internet access consists of physical infrastructure, but also that it takes up immense time and effort to build equitable and materially impactful forms of digital community. Rhizomatic Pedagogies began as a project seeking to present programming for online space. In the end, though, it was less about presenting events than the changes made in back-end policies, fee structures, planning approaches, contracts, agreements, feedback tracking and reflection (the algorithms and network protocol development, if you will)—and less about the selection of specific, experimental, and advanced digital technologies than the embodied and candid conversations and realizations about the hidden labour required to sustain digital communities in mutually beneficial, harm-reductive, and meaningful ways. I don’t know that it could have been approached in any other way.

Belinda Kwan is a neurodivergent curator, writer, and arts administrator based in Toronto, Canada. She currently works at the new media artist-run centre InterAccess. Her past, present, and upcoming projects are documented on www.belindakwan.com.

Image caption: A redacted, zoomed-out image of a 36-page fillable PDF documenting the due diligence conducted and measures taken to ensure that Rhizomatic Pedagogies’ program design is equitable and accessible. This was created in preparation for a consultation process at the beginning of the project. Courtesy of Belinda Kwan.

1. Christina Battle, “Considering the Space of the Online,” BlackFlash Magazine, February 3, 2022, https://blackflash.ca/expanded/considering-the-space-of-the-online.
2. Battle, “Considering the Space of the Online.”. In this specific quote, Battle is referring to Instagram and social media, but a full reading of her editorial suggests this statement is also directed at other digital platforms and kinds of online engagement.
3. Spoon theory, coined by Christine Miserandino in 2003, is a metaphor illustrating the limited physical and/or mental energy available for daily activities. It represents the need to plan ahead to avoid energy depletion caused by chronic illness. This metaphor has been applied to various disabilities, mental health issues, and forms of marginalization, highlighting the hidden burdens faced by individuals living with them. A “spoonie” is generally understood as someone who subscribes to spoon theory due to their lived experience of chronic illness; however, as the concept’s use expands, it may have legitimate use for folks facing oppressive systems and other barriers to access unrelated to chronic illness or disability. See Christine Miserandino, “The Spoon Theory,” ButYouDontLookSick.Com (blog), 2003, https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf,  and Cleveland Clinic, “What Is the Spoon Theory Metaphor for Chronic Illness?” November 16, 2021, https://health.clevelandclinic.org/spoon-theory-chronic-illness/.
4.  I’m referring here to the NCSA Mosaic, a browser widely acknowledged as a major contributor to the Internet boom in the 1990s. Web historians and cultural commentators generally share the perspective that Mosaic’s image capabilities led to the browser’s success and the Internet’s rise in popularity. See Erik Gregersen,  “Browser (Computer Program).” In Encyclopædia Britannica, June 20, 2023, https://www.britannica.com/technology/browser, and Gary Wolfe, “The (Second Phase of the) Revolution Has Begun,” Wired, accessed July 10, 2023, https://www.wired.com/1994/10/mosaic/.     
5.  The “dot-com boom” or “dot-com bubble” refers to the tech sector’s rapid growth in the late 1990s. See John Cassidy, Dot.Con: How America Lost Its Mind and Money in the Internet Era, (New York: Harper Perennial, 2003), and Roger Lowenstein, Origins of the Crash: The Great Bubble and Its Undoing (New York: Penguin Books, 2005).
6.  American Parkinson Disease Association, “Early Onset Parkinson’s Disease,” accessed July 10, 2023, https://www.apdaparkinson.org/what-is-parkinsons/early-onset-parkinsons-disease/.
7.  Amy Marschall, “How Body Doubling Helps When You Have ADHD,” Verywell Mind, April 28, 2022, https://www.verywellmind.com/how-body-doubling-
   helps-when-you-have-adhd-5226086.
8.  Disability justice is an intersectional social justice concept and framework that treats disability and ableism as connected to other forms of oppression and identity including those based on race, class and gender. See “What Is Disability Justice?” Sins Invalid, June 16, 2020, https://www.sinsinvalid.org/news-1/2020/6/16/what-is-disability-justice.
9.  Mia Mingus, “Leaving Evidence,” Leaving Evidence, accessed July 10, 2023, https://leavingevidence.wordpress.com/, and Alice Wong, “Creativity and Recovery: An Update,” Disability Visibility Project, February 22, 2023, https://disabilityvisibilityproject.com/2023/02/22/creativity-and-recovery-an-update/.
10. In computing, the tech stack refers to the combination of various technologies used to build and operate an application or system. See “What Is a Tech Stack: Examples, Components, and Diagrams,” Heap, accessed August 9, 2023, https://www.heap.io/topics/what-is-a-tech-stack.
11.  Miche Xu and Shanthiya Baheerathan, “The ‘Unfit in Canada: A History of Disability Rights and Justice,” Disability Justice Network of Ontario, accessed July 27, 2023, https://www.djno.ca/history-of-disability-justice-right.
12.  Leanne Betasamosake Simpson, Rinaldo Walcott, and Glen Coulthard, “Idle No More and Black Lives Matter: An Exchange (Panel Discussion),” Studies in Social Justice, 12, no. 1 (July 12, 2018): 75–89, https://doi.org/10.26522/ssj.v12i1.1830.
13.  It’s worthwhile to note that spoons, in spoon theory, are not meant to impose strictly standardized metrics for productivity. Instead, spoon theory is adaptive. It calls for attentive and recurring evaluations of energy as impacted by internal and external factors, and it calls for a forgiving and compassionate understanding of how capacity changes. The number of spoons is always temporary and provisional; it is an in-the-moment evaluation of what we can and should do to prioritize our well-being. It is a testament to how metrics can be useful, but only when those metrics respond to and serve the ever-changing goals of lived experience and community desire.
14.  The images accompanying this text are redacted examples of the massive spreadsheets and long documents I used to manage RP. They are intended to visualize the hidden labour of arts administration and reflect the complex and challenging questions posed by a project like RP. What is lost and gained when we take meaningful conversations, feedback, and lived experience and put them into rows and columns of digitized data? By no means do these images reflect the depth and importance of those conversations; nonetheless, they demonstrate the volume of information, communication, and digital labour and tools required by a neurodivergent person like me to remain functional and helpful within an organizational context and instrumentalize and systemically apply the analog feedback and learnings I encounter. The content redaction reflects the ironies of transparency, accessibility, confidentiality, and opacity at play in artistic-cultural organizations; the blurred-out text can be interpreted to represent the black-box, barriered aspects of arts organizations and technological applications more broadly, but it also speaks to the confidentiality required in thoughtful knowledge stewardship processes. At the time of writing, even though RP has closed according to its funder’s requirements, there’s still much work to be done regarding personal and community-centred check-ins as to how the knowledge will be shared with the public and the broader communities involved with the project, resulting in the general, rather than detailed, discussion of the events and learnings that transpired during RP.

This article is published in issue 40.2 of BlackFlash magazine. Get this issue