Crip Digital Intimacies: The Social Dynamics of Creating Access through Digital Technology

Abstract

Disabled people are uniquely positioned in relation to the digital turn. Academic ableism, the inaccessibility of digital space, and gaps in digital literacy present barriers, while, at the same time, disabled, Deaf, and neurodivergent people’s access knowledge is at the forefront of innovations in culture and crip technoscience. This article explores disability, technology, and access through the concept of crip digital intimacy, a term that describes the relational and affective advances that disabled people make within digital space and through digital technology toward accessing the arts. We consider how moments of crip digital intimacy emerged through Accessing the Arts: Centring Disability Perspectives in Access Initiatives—a research project that explored how to make the arts more accessible through engaging disabled artist-participants in virtual storytelling, knowledge sharing, and art-making activities. Our analysis tracks how crip digital intimacies emerged through the ways participants collectively organized and facilitated access for themselves and each other. Guided by affordance theory and in line with the political thrust of crip technoscience, crip legibility, and access intimacy, we argue that crip digital intimacy emphasizes the interdependent and relational nature of access, recognizes the creativity and vitality of nonnormative bodyminds, and understands disability as a political—and frequently transgressive—way of being in the world.

1. Introduction

How do we make the arts accessible? How does access change when it is directed by disabled people and through a commitment to being disabled together? These were the research questions that we, the authors of this paper, were pursuing along with our co-researchers, partners, and artists-participants through online arts-based workshops called Stories of Access as part of our research project, Accessing the Arts: Centring Disability Perspectives in Access Initiatives. As we explore in this paper, the sudden shift of this project to a virtual context led to important learnings of the ways that a commitment to access in digital spaces can create and intersect with feelings of connection and intimacy.

This project was funded by the Social Sciences and Humanities Research Council (SSHRC) and brought together the School of Disability Studies at Toronto Metropolitan University, Re·Vision: The Centre for Art and Social Justice at the University of Guelph, and Creative Connector (formally Creative Users).1 Accessing the Arts: Centring Disability Perspectives in Access Initiatives consisted of five monthly workshops conducted online via Zoom throughout the summer of 2021 as well as initial and exit interviews. The workshops enlisted seven artist-participants (as well as some of their caregivers/companions) who identified as developmentally disabled and/or neurodivergent from a variety of backgrounds and artistic disciplines—ranging from live performance to community arts to photography to visual arts. In addition to these research activities, we also organized multiple social gatherings on Zoom in response to participants’ requests to be able to connect more informally between workshops. With approval from our university’s research ethics board and with participants’ consent, these workshops and interviews were recorded. We gave participants the option to use their actual name or use a pseudonym. All participants but one elected to use their actual name. Throughout the workshops, artist-participants engaged in storytelling, knowledge sharing, and art-making activities. Workshop activities and conversations centered around responding to the overarching research question: “How do we make the arts accessible?”. We analyzed workshop and interview transcripts using Virginia Braun and Victoria Clarke’s method of reflective thematic analysis [2]. This analytic technique allowed us to approach our data by taking into account our dual-positionality (as researchers and disability community members with an interest in community-generated meaning of disability) as well as attending to our research question about the transformative impact of centering disability when producing new knowledge and cultural practices. From there, we generated themes, including the following, from our data: disability, art, and community is a site of meaning-making; disabled people agentively engage art in therapeutic ways; and alternative and currently unrecognized pathways into the arts reflect a diversity of disability experiences and can point us towards barriers to accessing the arts. As we grouped the data into thematic categories, we began to notice how conversations and workshop dynamics aligned with disability culture’s concept of “access intimacy” (defined below) and queried how these moments of intimacy occurred or were emphasized by the way participants engaged with each other virtually. This led us to create the code “digital intimacies” under our “meaning-making” theme. Working with extracts bundled under this code, as well as our investment in concepts and practices in disability studies and culture, brought us to the central question of this paper: How do moments of collective access on digital platforms lead to digital intimacy, non-traditional but effective forms of teaching and learning, and community formation?

We conceived of Accessing the Arts: Centring Disability Perspectives in Access Initiatives prior to the COVID-19 pandemic’s descent on Toronto, Canada in March 2020. Much of our initial planning focused on mapping out an access plan. We approach accessibility, a cornerstone of our ongoing research, as an opportunity to envision and plan for research processes that are led by disabled people and in which disabled people can meaningfully participate. This research project aimed to mobilize a “critical access” perspective which, according to Aimi Hamraie [3], holds that disabled people’s “access knowledge” must be centered when conceiving of and driving access. Putting Hamraie’s concept into action, we designed our research activity to ensure that disabled people could not only participate in the workshops, but also co-design its access plan in accordance with their access needs, knowledges, and expectations. For example, research participants were invited to give feedback on our access plan—what was working and what needed attention and improvement—during access check-ins at the beginning of each workshop. To support this feedback process and the changes to our access plan that it would inevitably bring, we designed our access budget to accommodate a flexible and improvisatory approach to access [4]. Though we fully expected our access plans to shift in response to participants’ contributions, we did not anticipate the significant change of holding the workshops virtually in the midst of a pandemic. This new digital context required us to rebuild the access plan that we would present to our participants for their feedback, deconstruction, and rebuilding in the co-design process. For instance, we had a learning curve when it came to creating relaxed atmospheres in online workshops, and even determining appropriate durations for the workshops, given that, at the time, we did not yet understand how fatiguing our online lives would be. To address some of the access barriers that were anticipated, project partners equipped any artist who did not already have the technology needed to access these virtual workshops with iPads and hotspots with WiFi. We were then able to draw on our prior access knowledge to develop some of the new access practices that were required to conduct accessible research during the pandemic. For example, our commitment to audio describing visuals to provide access for Blind and low-vision participants and reading aloud written text to provide access for people who do not communicate through written language came together through a new access practice to read aloud comments in the Zoom chat. Other access practices were shared with us by partners on the project. For example, in an effort to work with artists who are typically not included in disability arts projects as participants and leaders, we partnered with BEING Studio, an art studio for artists who identify as neurodivergent and/or developmentally disabled. Through this partnership, BEING Studio shared access practices that they have developed for their community, such as creating plain language Zoom guides that explained tips and best practices for operating Zoom in clear and accessible language—a practice that addresses potential barriers caused by varying levels of digital literacy. We were also purposeful about making and ceding time for people to build connections. At in person events, this might typically happen when two people are waiting for their paratransit ride or while participants eat their lunches together. In a virtual context, we needed to intentionally structure moments in which digital intimacies might form. We facilitated the opportunity for connection by organizing Zoom hangouts at the request of artist-participants, as previously mentioned, and by conducting short ‘check-ins’ and ‘check-outs’ at the start and conclusion of each workshop at the suggestion of one artist-participant.2 This became a way of sharing with the group how they were doing/feeling at each session.

Because of, aside from, or, perhaps, in spite of the way our access plan and workshop design attempted to allow for connections to form through online platforms, we discovered moments of digital intimacy throughout the sessions. In this paper, we attend to these moments for how they mobilize disability justice such as Mia Mingus’ “access intimacy” [5] and consider how the digital context of these workshops extends our understanding of these practices and the crip concepts which describe them. Mingus describes access intimacy as “that elusive, hard to describe feeling when someone else “gets” your access needs” [5] (para. 3). She distinguishes it from other kinds of (emotional, physical, and psychological) intimacy, offering that it is a feeling of safety when access needs are innately understood and appreciated, rather than being positioned as an obligation, charity, or a burdensome chore [5] (para. 3). To frame this concept in relation to the digital context of the Stories of Access workshops, we will first review a selection of scholarship that has used the term “digital intimacy”. We then contextualize our addition of “crip” through the concepts of crip technoscience, crip legibility, and affordance theory. We conclude by offering a series of examples of how crip digital intimacy occurred during the Stories of Access workshops, noting moments when it also reflects broader perspectives within disability culture. In doing so, we seek to contribute to disability studies scholarship that takes interest in how access, which is oftentimes procedural, is also required for and embedded in relationship building.

1.1. Digital Intimacy

As a term and concept, “digital intimacy” has been deployed broadly and somewhat indiscriminately across a range of disciplines. It is possible to find reference to the term—or to analogous terms like “online intimacy” or “ambient intimacy”—in contexts of medicine, digital art and performance, social media, online dating and cybersex, and migration and/or transnational relationships and kinship. It can emerge between individuals or at a broader social or cultural scale [6]. Some early scholarship evoked divisive attitudes towards digitally mediated experiences of intimacy, revealing a “moral pani[c] over the potential weakening of social ties and intimate relations in the digital age, but also in relation to the commodification of relationships built into social media platform infrastructure” [7] (p. 5). Yet, in general, the term is used to identify a sense of closeness or connection that emerges between people in the context of digital, virtual, or online spaces. Earvin Cabalquinto’s research on Overseas Filipino Workers (OFWs), as one example, investigates how individuals reignite familial relations by re-staging, experiencing, and negotiating their sense of home via mobile media. Cabalquinto demonstrates that digital media (specifically rapidly evolving mobile devices) not only allows for ongoing communication and the maintenance of relationships between overseas workers and their distanced family members, but also contributes to new spatial and temporal arrangements of domesticity as users engage in tasks like coordinating domestic duties and remotely tracking their children’s movements [8] (p. 797).

“Digital intimacy” is also used in the context of medicine, specifically, regarding patient-provider relationships and the monitoring of health conditions. Analyzing their own long-term experiences of living with Type 1 diabetes, Carrie Rentschler and Benjamin Nothwehr describe how the continuous monitoring of glucose levels can become “forms of intimate feeling and self-knowing” that are brokered through a range of technology and data, including glucose sensors, mobile app receivers, and networked insulin pumps [9]. Enrico Piras and Francesco Miele—in their study on the remote monitoring of patients with chronic health conditions—describe digital intimacy as “relationships characterised by a thorough familiarity made possible, sustained or reinforced through electronic devices by means of both data sharing and personal communication” [10] (p. 117). They note that while technology-mediated healthcare is often limited to sharing health data (and, therefore, not assumed to be a mode of improving patient–provider communication), in practice, health providers and patients often do exchange personal details and feelings. These exchanges frequently lead to a sense of intimacy, but, importantly, can also provoke a sense of too much intimacy, in that the exchanges can feel intrusive or demand high amounts of unacknowledged emotional labor from the receiving party [10] (p. 119).

Piras and Miele’s concern recalls the critical perspective of feminist technology studies, which highlights the uneven ways that digital modes of connection play out across gender, race, class, age, and geography. Throwing into sharp relief the eroding distinctions between public and private spheres, feminist critiques have brought needed attention to the fact that technological advances can reinscribe oppression even as they promise liberation [11,12]. The increase in digital health apps and wearables that track users’ biometric data (from daily step count to menstrual cycles) is one example, as these technologies tread a fine line between self-tracking, self-care, and self-surveillance, which require that the user freely offer up personal (i.e., deeply intimate) information on their physiology [13]. As Elissa Redmiles and Cody Buntain describe, users are engaged in “relationship exchanges” with technology providers, and using technology requires users to decide if they are willing to offer their personal data in exchange for the digital service or information they desire [14] (p. 311).

Much recent work on this concept, unsurprisingly, has been in connection to the COVID-19 pandemic, which radically altered many forms of intimate communication and connection [15]. For those with access to digital technologies and reliable internet, the online world became a dominant focus as it allowed for professional and personal connections to happen remotely or at a distance. For those whose work transitioned online, increasingly intimate relations were likely developed with laptops, cellphones, and tablets, as well as with various video conferencing platforms. These intimate digital relations may have also led to a sense of keener intimacy with friends, acquaintances, and colleagues, as people’s domestic lives—perhaps in the form of cramped bedroom workspaces or cats crawling across a laptop screen—were on digital display. Certainly, media and technology have long played a role in arousing emotions and generating affective expression [16]. However, Ash Watson et al. observe the “human–digital–home assemblages” that were created as people changed the ways they used digital platforms, technologies, and apps—often using these technologies with more frequency in order to receive and maintain feelings of affection, friendship, familial ties, emotional connection, and support, and to express concern for others [17] (p. 146). Writing during the pandemic, Meryl Alper, as well, observes that “kids on the spectrum”—meaning autistic and neurodivergent young people—use media to cope with uncertainty and engage with their emotions [16] (p. 191). Digital interfaces also became involved in other, more decidedly intimate spheres, mediating, for example, our connection to hospital rooms, funerals, weddings, graduations, and bedsides. Some of these intimacies may have been welcomed, others less so. But their presence in our lives over the past four years in particular is undeniable, even if—as T. Nikki Cesare Schotzko reminds us in relation to Zoom—the intention of such platforms is to create workplace efficiency and the unimpeded availability of the worker, rather than engender personal intimacies between users [18].

1.2. Crip Digital Intimacy

Recognizing that digital intimacy occurs in different contexts, forms, and arenas, we now seek to extend from these uses of the term to develop the concept of crip digital intimacy. In disability culture, crip is a reclamation of the derogatory use of the word cripple and a signifier of all the ways disabled and crip bodyminds interject our politics, our creativity, our ingenuity, and our resistance into systems of oppression and compulsory able-bodiedness [19]. This term—taken up within disability studies [20,21] and yet purposefully positioned beyond the structures of academia [22]—is linked to a history of disability arts, civil rights, and activism that rejects the idea that disability is something to be ameliorated or cured. Rather, crip points towards a radical critique of normality and a desire for difference; a term, as Mel Chen et al. note, that “indexes a wide range of positions, orientations, subjects and acts” and which “has the potential to remain open, allowing for disabilities and illnesses not yet marked as such… and for political orientations, affiliations, and solidarities still emerging” [22] (p. 3). Throughout the many activist, artistic, academic, and community “crip genealogies” that we might trace [22], our addition of the modifier “crip” is intended to illustrate a specific kind of access intimacy [5] that emerges between disabled people and within the disability community through the use of (and inside the container of) digital platforms. Crip becomes an important modifier that attunes us to the ways that we, as disabled people, come together to create (access) intimacies that are facilitated, mediated, and, perhaps, at times, also impeded by digital contexts.

Crip digital intimacy offers a response to how cyberculture studies and internet studies have tended to sideline the lived experience of disability. Elizabeth Ellcessor observes that even as critical cyberculture studies intended to place cultural differences at the center of its analysis, disability was often only addressed metaphorically or through its invisibility [23] (p. 1763). Gerard Goggin notes how research that is focused on quantifying the digital divide for people with disabilities typically relies on categories of disability that fail to capture the full range of disability experiences and the social experience of disability in relation to digital inaccessibility [24] (p. 257). As a practice that is played out in digital spaces between disabled people, crip digital intimacy brings attention to the social, as well as the affective and interpersonal, experiences of disability in digital space. This concept also intersects with wider issues of the inaccessibility of digital tools for people with disabilities. In their writing on disability and social media, Victoria Bury voices a frustration in digital media studies scholarship that assumes accessibility in the digital sphere: “I feel the need to stress—scream—that just because a space, platform, application, community, or body of knowledge is digital, it does not mean that it is accessible” [25] (p. 80, original emphasis). As Bury indicates, there are many ways that digital tools create barriers to use for disabled people, ranging from a lack of internet connectivity to a lack of digital skills to inaccessible hardware and online interfaces [26]. Importantly, digital inaccessibility is contextual and shifting, and barriers to digital space manifest in uneven ways. Addressing these barriers has been a strong focus in fields of assistive technology and in scholarship on digital inequality [27,28]. Increasingly, it has also been a focus in disability rights discourse—a note from the UN Secretariat at the 16th Session of the Conference of State Parties to the CRPD focused on “Digital accessibility for persons with disabilities” and described the “critical role of digital accessibility in empowering persons with disabilities and ensuring that they fully enjoy human rights and fundamental freedoms” [29] (p. 2). The report noted that—despite policy measures and digital accessibility standards—disabled people still encounter barriers that prevent their full access and participation in digital forms of education, telehealth, employment, and various government services.

Digital barriers are also linked to political economic structural inequities. For example, affordable screen reading software may be out-of-date and, therefore, fail to provide a Blind user with sufficient access to some online spaces [23] (p. 1764). Meanwhile, tools such as iPads may be more readily available to some users than others, an issue addressed in Alper’s research, which found that many families that include disabled technology users find iPads to be “fundamental to expression” [27] (p. 106). However, trying to obtain iPads for disabled children as per schooling requirements varied dramatically depending on parents’ levels of privilege. More privileged parents (who may have more than one iPad in the home) associated these devices with learning, fun, and entertainment. Less privileged users had to worry about “proper” iPad etiquette that came with school-borrowed iPads, including putting up with school-based surveillance and using obligatory protective cases that, at times, restricted children’s use of the technology and implied that the device would break under a disabled child’s care (positioning the child, rather than the device, as a liability). These examples show that inaccessibility in digital space is “bound up with overlapping power structures” including barriers embedded in political economies of technology which include social, affective, and interpersonal considerations [27] (p. 105).

In response to such barriers, however, disabled users “often find work-arounds, community-driven solutions, or alternate ways of using digital media” [23] (pp. 1764–1765). We find myriad examples of this under the broad purview of what Hamraie and Fritsch describe as “crip technoscience” [30]. Crip technoscience points to the frictioned and interdependent ways disabled people engage with and reimagine technology (both digital and otherwise) in service of individual and collective access, of political action, and as a way to resist social and cultural demands to cure, fix, or eliminate disability. Examples of crip technoscience include collective access-mapping projects that crowdsource and share information on accessible venues, or the ad hoc ramps situated around Toronto by the StopGap Foundation that address the inaccessibility of single step storefronts, an issue that typically slips between the cracks of formal accessibility legislation requirements. While many different technical, material, discursive, and digital projects might fall under the umbrella of crip technoscience, they share a desire to center disabled people as knowers and makers, and to counter and resist what Ashley Shew describes as the “techno-ableist ideas” that dominate design and technology—ideas that would use technology as a means of overcoming or eradicating disability [31]. Rice et al. argue that disabled artists’ and makers’ experiments with crip technoscience call out and unsettle the “technofix” of disability technoscience, but also go beyond—“extending into the material realm, [disabled makers’] play with, transgress, subvert, and flip technofix practices in ways that activate non-normative vitality and access as creative life affirming praxis” [32] (np).

Though crip digital intimacy shares the political framing of crip technoscience, it can differ slightly in how it manifests in practice. Crip technoscience describes modes of hacking or tinkering with technology (digital or otherwise) to more critically accessible ends. While crip digital intimacy can certainly emerge in this context, it can also be found in more traditional uses of technology. In other words, with this concept, we focus less on the adaptation or reimagining of technology to, more so, consider the relational connections and affects that spring from the ways disabled people approach and relate to each other within digital spaces. As we explore in the examples that follow, the primary technology used for the Stories of Access workshops was the video communications platform Zoom. Participants did not necessarily hack this software or use it in non-traditional ways, but, we argue, engaged with the particular affordances of the digital platform so as to foster relations of crip intimacy. This was done even when Zoom presented access barriers.

Another critical component of crip digital intimacy is to recognize how it is influenced by the differing opportunities and barriers offered by the technology in use. Affordance theory—first introduced in the 1960s by ecological psychologist James Gibson—offers a framework for understanding how different technologies, objects, and environments provide varied opportunities for use and engagement. Gibson conceptualized affordances as the means through which an organism perceives and acts upon its environment. In contrast to the more popular model of perception at the time (which favored the idea that perception was mediated through representation and previous knowledge), Gibson argued that organisms could directly perceive the possibilities that were available to them within a particular environment, even a new environment. What is gleaned from this direct perception are the affordances that an environment or object offers—in Gibson’s words, “what [the environment] provides or furnishes, either for good or ill” [33] (p. 127, original emphasis).

Taking up Gibson’s work and also work on affordances in design theory, Jenny Davis’ study of how objects and technologies afford differently—depending on context but also the activities and uses that they encourage, demand, or refuse—is useful for thinking about how intimacies can be differently constructed through digital technologies [34].3 Davis seeks to shift focus to consider not what an affordance is but how things afford, how they shape our experience of them. She sets out a theoretical scaffold for understanding affordances that is oriented around mechanisms and conditions. “Mechanisms” refers to the “how” of affordances, i.e., the ways that technologies “request, demand, encourage, discourage, refuse, and allow particular lines of action and social dynamics” [34] (p. 11, original emphasis). “Conditions” capture the relational nature of human-technology interactions, i.e., the way that affordances vary depending on perception, dexterity (e.g., facility with technology), and cultural and institutional legitimacy (the way that one’s relation to technologies is impacted by location within broader sociopolitical structures and systems of power). Also applicable is Arseli Dokumaci’s work, which brings together affordance theory and disability studies. Building on but deviating from Gibson, Dokumaci advances “activist affordances” as the “possibilities of action that are almost too remote and therefore unlikely to be perceived, and yet are perceived and actualized through great ingenuity and effort to ensure survival” [35] (p. 6). Activist affordances describe the artful, everyday efforts of disabled people to realize more liveable worlds—the necessary ways we “literally make up whatever affordances fail to readily materialize in [our] environments” [35] (p. 6, original emphasis). Here, Dokumaci highlights the range and variation in how an organism relates to their environment in order to ensure their survival [35] (p. 17). She develops the concept of “shrinkage” to describe “the process in which possible affordances are reduced in a given body–environment relation. Shrinkage makes the field of possible affordances smaller” [35] (p. 18, original emphasis). Disabled people, when confronted by the conditions of “shrinkage” in an environment, devise ingenious tactics, approaches, and solutions in order to “actualize a more hospitable world” [35] (p. 26). This ingenuity is reflected in our discussion of crip digital intimacies and evident in how the artist-participants in Stories of Access approached their sessions together. In this way, crip digital intimacy resonates with what Gracen Brilmyer and Crystal Lee term “crip legibility”, a term that signals the ways disabled people “flexibly respond to, contort, or collectively organize themselves to fit within (or be understood by) existing information systems while building new systems of resistance and care” [36] (np). In the examples that follow, we track how crip digital intimacies emerged through the negotiation of these variations of responding, contorting, collectively organizing, and cultivating methods of resistance and care. Thus, guided by affordance theory and in line with the political thrust of crip technoscience, crip legibility, and access intimacy, crip digital intimacy emphasizes the interdependent and relational nature of access, recognizes the creativity and vitality of nonnormative bodyminds, and understands disability as a political—and, thus, frequently transgressive—way of being in the world.

2. Findings and Discussion

2.1. Crip Digital Intimacy in the Stories of Access Workshops

We now turn to describing examples of crip digital intimacy that emerged during the Stories of Access workshop sessions, which demonstrate how access intimacy can structure social relations.

2.1.1. Facilitating Access through Knowledge Sharing

During the Stories of Access workshops, facilitators began to notice moments wherein participants co-created access and generated community. Participants articulated their access needs to each other and also assisted—when asked and often unprompted—with ensuring others’ access needs were met. We identified crip digital intimacy embedded in these moments: short, sometimes fleeting, and seemingly unremarkable acts between participants or between participants and facilitators engendered by the digital context of the session. As noted above, in contrast to crip technoscience, these acts were not necessarily linked to a reimagining or a misuse of the technology beyond its intended application. That is, participants did not hack Zoom’s code or tinker with its interface, but they supported each other in finding solutions to the access barriers that the platform presented. These solutions had practical components but also came from the affective and relational intention of the participants, recalling what Sara Ahmed describes as the “forness” of an object [37]. Forness includes both the intended action of an object (its pragmatic use) and an affect and possibly even an affection, such as when we are in favor—or for—something. A dual sense of forness was present as participants supported each other in navigating access barriers related to the technology. For example, in one session, Jake was attempting to share a video he had made through Zoom. Workshop facilitators suggested we might watch this video independently after the workshop in order to keep to our schedule. This suggestion might have also been motivated by the imagined difficulty of troubleshooting the audio and video sharing, particularly remotely. But the artist-participants made it clear that they wanted to watch Jake’s video together. Jake and his mom (who was also in attendance to facilitate Jake’s communication with the group) were having difficulty getting the video to play with sound and another artist-participant, seeley, interjected to offer advice on how to enable the sharing of audio:

seeley:

This is seeley jumping in since I realized something that might be important. So Jake, as the co-host, I think might also need to go to the bottom toolbar in the zoom window where it says “share screen” because you have to also make sure to enable that you’re sharing your audio sound from your computer. So I think that might make a difference if you go down to the share screen button at the bottom because you are co-hosting. I think that you can open a little control page and kind of at the bottom of that page. There should be a little checkbox about sharing your audio or your sound.

Jake and his mom:

I can’t see that. We did press screen share, it says “you are sharing screen”.

seeley:

If you—it’s a little hard for me to know for sure because since I don’t have the host status, the control functions aren’t the same for me—but I think if you look at like to the right side of what would be a green button in the center of that that bottom toolbar that shows up on Zoom.

Jake and his mom:

It’s actually at the top, but that’s okay. So it says you are screen sharing and then it says use… share the sound? Maybe that? Maybe we’ll try to press that.

seeley:

Yeah, exactly. I think you need to enable that.

Jake and his mom:

Okay, so we said “share sound”, so let’s see if that makes a difference…

In this extract, seeley is providing instructions to Jake and his mom about how to share their video and its audio through Zoom. Prior to this interaction, there was a collective desire among artist-participants to watch Jake’s film, interrupting the desire of the facilitators to move on with the schedule. But seeley did not let the responsibility of showing the film, and the tech troubleshooting this required, fall solely on Jake and his mom. Instead, seeley “jumped in” when sie “realized something that might be important”. Reflecting on this extract in relation to “digital intimacy”, we infer that what seeley was noticing as important was a gap in digital literacy—an access barrier—that was not adequately addressed by the researchers’ access plan. Through a commitment to be disabled together in this online space, seeley connected to Jake to share hir own digital literacy to ensure that Jake’s artistic contribution was not left behind in the formation of this artistic community. Even though it was “a little hard” for seeley to know exactly what Jake was looking at on his screen without “the host status”, sie took the time needed to bridge the digital divide and help Jake and his mom navigate his own screen. And seeley’s intervention, and seeley and Jake’s interaction, was effective; Jake and his mom shared the sound in his video and were able to share his contribution in its fullness and the other artists were able to gain insight into and respond to Jake’s process.

It may be tempting to look past this short exchange between seeley, Jake, and Jake’s mom in service of the primary moment of Jake sharing his artwork with the group. When one is used to having their access needs met and their gaps in knowledge bridged due to their embodied privilege, because they are the “expected and desired” participant, or because they are used to their self-advocacy being responded to in affirmative ways, their requests for help are regarded as reasonable and attended to as such. Their inclusion continues to be facilitated. For those of us with these experiences, it might be easy to pass over these micro—but also wholly significant—moments as unnoteworthy. And this was the initial impulse of the facilitators: to move on and stick with the schedule when Jake could not quickly make technology work. However, in a moment of solidarity, seeley noticed and then interrupted this instance of continued exclusion by attending to the call to slow down. In this seemingly unremarkable, micro-moment of community rooted access facilitation, we observe a depth of access intimacy wherein everyday efforts toward crip legibility are enacted. As writer and disability justice activist Leah Lakshmi Piepzna-Samarasinha describes, access is “in the big things, but it’s also in the little things we do moment by moment to ensure that we all—in all our individual bodies—get to be present fiercely as we make change. Embedded in this is a giant paradigm shift” [38] (p. 75). Lee et al. note that a key component of meaningful digital engagement for disabled artists is providing “tailored education and training to enhance their knowledge and competence in managing and processing digital technology and information online” [39] (p. 42). As previously described, BEING Studio did create a Zoom guide and provide training on the fundamentals of using this digital platform to their artists, including Jake. Yet the above example demonstrates how training can also occur in more informal moments between colleagues and peers and foster a sense of access intimacy between them. As important as access documents are, they cannot replace the need for digital access intimacy that emerges in real time in response to the way access needs sometimes go unmet when logistics, the busyness of the moment, and multiple interpersonal dynamics take over.

From a disability culture perspective, we can also consider how this short exchange both reflects and is connected to a broader history of mutual aid, education, and collective access organizing within disability community. Disabled people have long shared hacks, tricks, tips, and workarounds to make technology more accessible and to advance disability justice—both central components of crip technoscience. For example, at the start of the COVID-19 pandemic, Piepzna-Samarasinha created a public Google document with survival, preparation, sanitization, and mutual aid tips and advice for disabled people. Cheekily titled “Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine”, this guide was widely shared and spurred various other versions (such as the “Fat-Assed Prepper Survival Tips” created by radical fat activists, which is also relevant to disability communities since fat justice and disability justice are interconnected through their critical concentrations on issues of embodiment and health) [40]. As a living digital document, the guide represents a blueprint for social relations that center disabled people, our safety, well-being, and care, and the desire for collective access. Though markedly different in how they materialize, both Piepzna-Samarasinha’s document and seeley and Jake’s exchange showcase moments of education and community support through digital tools, and thus, afford the possibility for access intimacy within digital space.

2.1.2. Zoom Chats and Emojis: Multimodal Forms of Communication

One important access element that Zoom offers is the possibility of multimodal communication, particularly through its chat function. Broadly, the availability of the chat function as a form of written communication provides the opportunity for participants to converse outside of normative conventions of verbal speech and communication. For some, the chat can allow for a fuller expression of their thoughts and ideas. As Alper explains in her critical examination of the politics of “voice” in relation to digital technology (especially for disabled and Augmented and Alternative Communication (AAC) users), the non-verbal “voices” produced through technologies of multi-modal communication, including typed chats, are never disembodied [27]. The practice of reading out the chat dialogue or inviting the contributor to read out their written comments themselves integrates what might be regarded as secondary directly into the conversation and also functions as an important access practice that allows non-readers and Blind people access to the conversation. For example, one artist-participant offered: “That’s what [anonymized participant] said too in the chat, she’s liking all these stories”. As this extract demonstrates, reading the chat aloud ensures that all participant contributions are shared equally. In contrast to the normative use of the chat function, reading the messages aloud takes the time to center these comments and provide necessary access while also amplifying contributions from participants who may not have the same space or authority as facilitators. Lifting up the chat in this way became important to fostering digital intimacy, given that participants used the chat to offer each other accolades and notes of support when sharing artworks or insights. Consider, for example, this extract in which a facilitator reads aloud a chat comment by seeley to another artist-participant, saying, “self trust and recognition of your own true feelings are important, and more important than what teachers might say critically”. Another way artist-participants used the chat function in order to meaningfully participate in the conversation and strengthen community bonds was through the use of emojis, which again, were affirmative. For example, when artist-participants were showing their work or sharing thoughts, others would contribute emojis in the chat, which was then read aloud during breaks in the conversation. These emojis served as digital shorthands to express that they agreed with, were impressed with, or generally supported what was being shared, for instance, as we see in this extract: “seeley’s giving you little confetti”.

The chat also allows us to participate in asynchronous conversations; we can share thoughts as they come to us immediately rather than having to wait for a break in conversation. This invites a rhythm of sharing ideas that might be dismissed as “rudeness” in other forms (e.g., interrupting someone as they are speaking) but is actually a productive way of participating in a conversation for many, including neurodivergent people. Again, rather than regarding this as an unremarkable use of a Zoom function, we regard and invite people to use the chat as an important modality within our access plan. Given that society privileges normative oral speech and communication patterns, Alper argues that what matters is not so much the mode of communication, but the social value ascribed to that mode: “If we take for granted that everyone has an embodied voice, then we run the risk of disenfranchising individuals who do not or choose not to communicate [in a normative way]” [27] (p. 40). Therefore, regarding the written chat as an integral part of the workshops allowed us to create important access practices and recognize significant moments of digital intimacy.

As much as digital platforms like Zoom are described as offering opportunities for fostering connection (and, as we are arguing, crip digital intimacy), we still find a strong discourse that focuses on how digital space impedes social connection and prevents meaningful forms of personal interaction. For example, a co-authored op-ed written by undergraduate and graduate students from York University in 2020 discussed the challenge of connecting with peers and of staying motivated during online classes—specifically during the early months of the pandemic when they were also not able to be physically present on the university’s campus. They note:

Students struggle to remain focused, motivated, committed, and there is no longer a sense of familiarity and community among students and professors. This is not to say that online learning can only produce negative outcomes, but rather, to acknowledge the difficult challenges it poses for all students [41].

There are undoubtedly differences between in-person and online learning, and the sudden shift to online course delivery during the pandemic presented many challenges for many reasons for educators and learners alike. However, positioning digital space as an impediment to the formation of community disregards the fact that, in disability communities, we have been coming together remotely and digitally for decades and have fostered ways of connecting across distance and creating a sense of ‘togetherness’ that are accessible and deeply impactful. The insistence that physical proximity is a requisite for community—or that a meaningful sense of ‘togetherness’ cannot happen digitally—is rooted in ableist understandings of what togetherness requires. In response to inaccessible public space and systemic discrimination, disabled people have developed culturally responsive ways to connect across email listservs, Twitter threads, podcasts, video chats, Google documents, mobile robots, and other technologies—modes of remote access so plentiful that they are being catalogued into a remote access archive by disability scholar Aimi Hamraie and their team at Critical Design Lab, an arts and design collaborative centered in disability culture and crip technoscience [42]. Technologies and digital spaces that allow for remote access have, for years, provided accessible routes for disabled people to participate in public dialogue and events and are a critical way that we have pushed back against the ongoing attempts to remove us from (physical and social) public space [43,44,45]. Further, these digital spaces and technologies have also been conduits through which robust disability communities have formed. Kelsie Acton and Aimi Hamraie write that remote access “continues to be a site of ingenuity, experimentation, and reinvention informed by disability experiences” [46] (np). Part of this reinvention happens in small ways, such as in the micro-moments of reading out comments from a Zoom chat, in noting that someone used the confetti emoji in response to someone else’s contributions, in being able to insert a comment when one is compelled to without having to wait for a conversational break, and, for some, in being able to see others’ support and affirmations in real time. And while coming together in person is often meaningful, and digital proximity is not an exact replication of physical proximity, the Stories of Access workshops illustrated the functional and affective meaning of these moments in digital space. They show how a commitment to being together and an intentionality when connecting through digital modes has become an important part of disability culture.

2.1.3. Digital Burnout and Asynchronous Connection

Although crip digital intimacy offers many moments of interpersonal connection, it can also create challenging affects and experiences, particularly in moments when intimacy is fostered in potentially undesirable ways. That is, though we understand crip digital intimacies as community forming and as central to facilitating access intimacy in digital spheres, we recognize that experiences of intimacy are not universally positive—particularly for disabled people who are frequently subjected to overly intimate medical interventions and investigations, unwanted (and possibly even violent) offerings of care, moments of forced disclosure related to our bodyminds, and highly intimate public surveillance.4 Mingus contrasts their concept of “access intimacy” with “forced intimacy”, a term that describes the everyday ways that disabled people are expected to share parts of themselves or maintain unsettling relationships in order to meet their access needs [49]. Social context, interpersonal dynamics, and power structures all contribute to the ways that vulnerability, as a cornerstone of intimacy, can be experienced as fostering connection and trust, or as an invasion of privacy and safety.

The challenges of digital intimacy can emerge in seemingly mundane ways. For example, we held the Stories of Access workshops during the height of the pandemic, at a time where so much activity—from work, to workshops, to theatre and art exhibitions, to gathering with family and friends—was happening online. For many, pandemic lockdowns were extremely isolating, which contributed to a sense of urgency, and the feeling that one had to be online whenever there was the opportunity as it was one of the only ways to feel connected to other people. However, not everyone could be online, or even on screen, all of the time—particularly folks with acquired brain injuries [50]. It seemed necessary (and we think it was) to hold our workshops online to keep each other safe as COVID-19 infection rates spiked. Indeed, we required participants to be online for a few hours at a time and to attend a majority of the sessions. We did not provide an asynchronous method of participating; to be frank, we did not even think to incorporate this into our access plan as our impulse and desire to be together in real time during this period of isolation was too strong. However, now thinking about our interactions with artist-participants in the workshops and reflecting on some of the extracts gathered under the “digital intimacy code”, we realize that digital intimacy, like intimacy, can be at once necessary and life-giving as well as challenging, defeating, and injurious. Therefore, it is important to offer different ways of engaging in digital communities, both synchronously and asynchronously. In the extracts we share, artist-participants speak to how these digital workshops invited opportunity for connection and were fatiguing at the same time.

In the final workshop, seeley expressed how “affirming” it had been to be “connecting with a good shared cohort and team”. Sie continued, “It was very important to be in community in that way with you”, speaking to the importance of the “rhythm […] of checking in at least monthly [and] more regularly—weekly—if desired”. When asked how the pandemic had changed hir’s art practice, sie said:

Yeah, I mean I… burnout. Digital burnout. A lot of that to contend with and well over a year in now. So it has, I feel like, I feel like I’ve had some sense of pressure, you know? To… to support so many different people’s work that they’ve put in the effort to making in a way that can be shared online. But it’s also a certain point physically and cognitively hard on me to try to really take in those details through this screen focused way.

In these two extracts, seeley talks about hir’s experience of the increased demand for being online that came with the pandemic as well as the importance of synchronous online art and community spaces for building and maintaining vital experiences of artistic connection. Meeting online in a consistent way with a consistent group of artists was “affirming” and “important”. Also, the online demand to participate in digital arts and cultural events more generally was something to “contend with” resulting in “burnout”. The complexities of being in community that seeley articulates, which requires hir “to really try to take in those experiences in a focused way”, are both sustaining and draining. Though seeley’s description is specific to enacting community online, it accurately describes the complexities that have always arisen within disability arts. In disability arts and culture organizing, we have always been attuned to the fact that access frictions5 emerge in the requirement and desire to be together and the deep understanding that, for many, being in these spaces can be depleting. seeley also demonstrates hir dedication to actively be with others to build and sustain these community spaces. In this extract, seeley speaks to hir engagement with community through witnessing others’ work because, “they’ve put in the effort to making in a way that can be shared online”. The extract we shared in the Facilitating access through knowledge sharing section above demonstrates a similar dedication as seeley shares hir digital literacy skills with Jake to ensure that he can share his work and have it be engaged with by others.

The increased online access to events, work, and socializing during the pandemic was an important conduit for maintaining connection. It also represented a long-demanded access need for disabled people, one that many organizations had been reluctant to accommodate prior to the global shutdown (and which has since been revoked with concerning ease) [51,52]. For those who had adequate internet access, the hyperconnectivity and experience of being “permanently online” that accompanied the early months of the pandemic—which was, in many ways, a requirement for staying connected with others—contributed to digital overload that has been shown to result in “negative psychological outcomes such as lack of satisfaction, decrease in productivity, exhaustion, and burn out” [53] (p. 171). Zoom and other video conferencing platforms have also been identified as particularly tiring and anxiety-producing forms of digital engagement because they encourage self-monitoring and self-surveillance—so much so that the phrase “Zoom fatigue” is now common parlance in many social and professional contexts [54,55]. Experiencing digital fatigue can impede focus and may prevent intimacy from forming, thus creating a sense of disconnection and isolation from the experience. Though at times fatiguing, seeley reminds us that connecting online is critical for accessing the arts and facilitating artistic connection.

A crip response to this digital burnout and fatigue might be to “relax” online spaces by encouraging attendees to keep their cameras on or off as they choose or to move around or depart/rejoin the call as needed.6 Another might be to offer asynchronous and/or offline modes of digital engagement and connection. While the Stories of Access workshops all took place synchronously, in real time, and this allowed for artistic and community connections to form and for moments of access intimacy to occur across the group, seeley’s description of digital burnout has encouraged us to consider how to create opportunities for—or even recognize the enactment of—crip digital intimacy in asynchronous modes of engagement. Asynchronicity, or engaging in experiences at different moments in time, is a long-standing practice in disability culture that is key to providing access to people who may not be able to participate in real time and is aligned with the concept and practice of crip time. Crip time is a reimagining of how we approach and organize time that responds to the embodied and material experiences of disability. Refusing the linearity and rigidity of clock time, crip time “bends the clock to meet disabled bodies and minds” [57] (p. 27) so as to account for shifting access needs, energy levels, and lived realities.

Disability activist Imani Barbarin recently offered insights into the importance of asynchronous connection on TikTok (@crutches_and_spice). Barbarin describes learning of this concept from the disability-led critical design collective The Disabled List. As Barbarin explains, when conversations are asynchronous—when they can happen “without a time limit, and can span weeks, months, years, and people can still continue to go back to threads and discourses”—disabled people are given more and diverse opportunities to exist in, contribute to, and participate in the public sphere [58].7 In this framing, asynchronicity is a mode of crip time that allows disabled people to connect to and learn from public discourse in our own time and in accordance with the limits and desires of our bodyminds. This is no small feat, particularly given the high speed at which information flows across digital space. While we recognize that experiences of time, time pressure, and digital connectivity are highly subjective and individual (and also intersect with structures of power and positionality), we view asynchronicity as one way to mitigate digital burnout because it offers flexibility in when a user’s engagement takes place. By opening up the space of the “not yet” or the “later”, asynchronous engagement allows for a different temporal rhythm within digital space.

The potential longevity of asynchronous content can provide ongoing access and connection for disabled users and builds up an important digital archive of disability advocacy and activism. For example, Beth Haller describes how the recent proliferation of disability podcasts has not only provided important resources and advocacy for topics and experiences of disability, but is also powerful for its temporal reach [59]. Haller quotes disability activist and podcaster Alice Wong, who notes:

What’s really exciting about podcasting or just anything that’s posted online is that we really don’t know where it’ll go, who it’ll reach, and that’s exciting. ‘Cause there’s this infinite potential out there that someday, somebody might discover an episode 5, 10 years down the line, and it just might spark something in them. And that, to me, is really what it’s all about. It’s just putting something out there in the world for everyone [59] (p. 97).

The potential legacy and longevity of digital content that can be accessed asynchronously is poignant. Not only does it provide access for people who may not be able to engage with the material in the moment it becomes available (and, thus, can be a strategy for mitigating digital burnout), but it also enacts a digital archive that leaves traces of disability history, kinship, and knowledge. The historical and ongoing attempts to remove disabled people from public life—through eugenic impulses and practices such as assisted death, forced isolation, and discrimination—make this an urgent project. The title of Mingus’s disability justice blog—Leaving Evidence—underlines this point. As she writes,

We must leave evidence. Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were, who we never should have been. Evidence for each other that there are other ways to live--past survival; past isolation [60] (para. 1).

3. Conclusions

How do we make the arts accessible? With this as the guiding question for the Stories of Access workshops, what became a central learning was something that is well known in disability communities, but less acknowledged more broadly: the relational and affective advances that disabled people have made within digital space and through digital technology toward accessing the arts. Disabled people are uniquely positioned in relation to the digital turn—academic ableism, the inaccessibility of digital space, and gaps in digital literacy continue to present barriers for many, while at the same time, disabled, Deaf, and neurodivergent people’s access knowledge emerges at the forefront of innovations in culture and crip technoscience [30]. How we make the arts accessible is deeply interwoven with access knowledge. As we have shown in this paper, access knowledge is activated in moments of crip digital intimacy, wherein the social, affective, and interpersonal elements of disabled people’s commitment to being together take new forms and offer access affordances in new ways that meet the current ethos.

The knowledge shared and generated through the Accessing the Arts: Centring Disability Perspectives in Access Initiatives research project which hosted the Stories of Access workshops demonstrated this through the various forms of crip digital intimacy that were on display during the workshop sessions. Often occurring through micro-moments of access, crip digital intimacy responds to the affordances of the digital world. Additionally, although distinct from forms of intimacy borne through physical proximity, we argue that crip digital intimacy can be equally community-forming and meaningful. This intimacy was born out of an attention to access, and an intention to ensure that all participants could engage and contribute fully to the sessions. Ongoing negotiations around the ever-changing nature of access are foundational to disability culture and are at the core of how disability community is formed and evolves.

Writing on the social media platform Tumblr, Victoria Bury describes how they have “forged some of the most intimate relationships in my digital and material world” through this site, “mainly through processes and practices of translating alternatively-embodied and affective experiences into digital (textual, audio, visual) form” and sharing these with other users of the site [25] (p. 82). While Bury notes the disparaging comments and “digital stigma” they have received in response to what they share on Tumblr, they argue, still, that the platform—as a form of microblogging—not only affords possibilities of collectivity and kinship but also “a digital space from which I can see crip horizons and futures” [25] (p. 88). Crip horizons is an expansion of José Esteban Muñoz’s assertion of queerness as an ideality through which we can strive for new worlds and new ways of being. He notes, “We may never touch queerness, but we can feel it as the warm illumination of a horizon imbued with potentiality” and later adds that “it is not simply a being but a doing for and toward the future” [61] (p. 1). As a politics of futurity, crip horizons similarly allow us to imagine worlds “where access and disability thrive” [62] and where we move ever more assuredly “towards the magnificence of our imperfections—and towards an aesthetic uniquely situated and held in disability art” [63] (nd). Crip digital intimacies offer us one effort in the direction of such a horizon—efforts that occur in the mundane but deeply impactful ways that we intend towards access for ourselves and each other while sharing digital space.