Creating Assistive Technology in Disabled Communities, Five Years On: A Reflection of Neurodivergency and Crafting Accessible Social Spaces
Kathryn E. Ringland, University of California Santa Cruz firstname.lastname@example.org
Christine T. Wolf, Independent Researcher email@example.com
Five years ago, our paper, "Would You Be Mine: Appropriating Minecraft as an Assistive Technology for Youth with Autism" won Best Paper at ASSETS 2016 (Ringland et al. 2016). In that paper, we reported on our ethnographic engagement with a community for autistic youth called “Autcraft.” In Autcraft, we found community members using do-it-yourself (DIY) making activities to transform their Minecraft game into an array of assistive technologies which enhanced their everyday lives. Although centered around the Minecraft game platform, the Autcraft community spans across an array of other social media platforms - such as Twitter, Facebook, YouTube, and Twitch. The creative ethos we found flourishing in Autcraft shares a lineage with past scholarship highlighting how disabled individuals have long adopted, adapted, and appropriated systems in order to serve as assistive devices. Five years on, we take some time here to reflect on what has happened since and what we are looking towards for the future.
We had three main goals in writing our original paper. First, we wanted to highlight the ways in which members of the Autcraft community did this DIY work, and how it emanated from the creativity and crafting of autistic youth. Members of the community crafted community spaces by modifying the virtual environment. For example, creating their own social spaces or spaces where they could go to have a sensory break in the virtual world. This empowered the younger members of the community to explore their own identity and creativity in playing around with the virtual environment to come up with configurations that better suited their individual needs. Younger members of the community also took on more decision-making and leadership roles within the community during our ethnographic engagement. For example, emboldened by these successful building experiences, young members would then lead their own crafting projects and create larger buildings and monuments and invite others to join them.
Our second goal was to expand our definition and understanding of what “assistive technology” means, especially in online disability community spaces. Like other disability communities, those in the Autcraft community appropriate mainstream, off-the-shelf technology in order to enhance, mediate, and otherwise alter their own activities and interactions. Minecraft and other social media became the means in which autistic members of the community mediate their own communication and maintain relationships formed within the community. While the game was, first and foremost, meant to be a fun hobby, it was also a means of building friendships, learning new skills (such as reading, writing, and leadership), and empowering marginalized youth. We must recognize and honor the disabled experience - and let our informants guide us. What becomes an assistive technology, how, and why are all questions we should explore together with disabled communities rather than assume these categories are pre-defined or static.
Our third goal for this paper was to recenter the disabled experience and disabled communities as the experts in their own lived experiences. This work followed closely in the footsteps of others who were integrating disability studies scholarship within their work, inspired by “Disability Studies as a Source of Critical Inquiry for the Field of Assistive Technology” by Mankoff, Hayes, and Kasnitz (2010) (the now-winner of the Impact Award at ASSETS 2021). As we will discuss below, there has since been a groundswell of work that centers the disabled experience and critically assesses the systemic problems with how disability is designed for.
When we wrote our paper in 2016, we were both PhD students at UC Irvine. We have since graduated and moved along our own paths as researchers, but still bring with us a critical lens of accessibility. We decided to co-write this article as a reflection of how the field has shifted, but with an acknowledgment of our own growth as researchers.
KER continues to study how marginalized communities, particularly those who have disabled community members, co-opt and adopt mainstream technologies as platforms for support. Her work has continued to be autoethnographic as she explores communities that she belongs to and the ramifications of her own disabled experiences. One of the key take-aways from this Minecraft work was the essential ingredient of play for the appropriation, or “playing with,” the technology to make it accessible and assistive. Therefore, this playfulness continues to be a factor in the accessibility and assistive technologies she studies. This playful technology has included continuing to explore the potential of Minecraft for neurodivergent youth. Democratic learning spaces for autistic girls, such as Yellow Ladybugs in Australia, shows the potential to take the lessons learned from this original work and expand it to incorporate empowering neurodivergent youth to create their own community spaces (Harrison and Ringland 2021).
CTW is interested broadly in questions of sensemaking and equity. These questions arise in a number of settings and domains, but lately her work has focused primarily around topics of data-intensive technologies like artificial intelligence (AI) and machine learning (ML). There has been an explosive growth of research in the area of explainable AI (XAI), where often very technical approaches claim to render inscrutably complex AI/ML models “explainable” to human users. AI/ML models are complex due to the vastness of data on which they are trained, and which they model in high dimensionality. But questions of AI explainability and sensemaking also make salient a number of issues around access (Wolf, 2020).
By this, we mean access in a physical, tangle sense - access to apps and services, access to look “under the hood” of a particular model’s input/output sequence; but we also mean access in a broader sense of access to the larger promise - of bounty, of abundance, of participation, of capacity, of digital futures freed from the burdens of today that these cutting edge technologies make. But pressing and difficult questions arise in the wake of such promises. For whom is access made available? What are the prerequisites to these forms of access? We are just beginning to understand the contours of what we might call “data literacy,” or “AI literacy.” Are these literacy skills taught or are they learned on the go? Who dolls them out? What forms of gatekeeping exist? Further attention is needed to more fully chart the ways in which people come to make sense of the complex and messy data-rich worlds we are living in - and the attendant webs of power and politics which require our attention as we address questions of access.
Reflection of the Last Five Years
Five years later, questions of access to spaces that foster creativity, crafting, learning, and empowerment still exist. However, there have been two larger societal shifts in the last five years that have directly impacted research in this space. First, the COVID-19 pandemic that started in the beginning of 2020 left many people scrambling to move their work and socializing online, something which many disabled people had already been doing for many years. Second, culturally, there has been a shift towards more inclusive language and social spaces, with a strong showing of neurodivergent-positive communities on social media, especially.
Impact of the Pandemic
When many began to shift their work and social lives online during the COVID-19 pandemic, many scrambled to adjust. But for those who had been using online technologies for their social interactions and work, this shift looked much different. That is not to say that this shift was easy for anyone. Non-disabled colleagues had to learn the appropriate ways to make online work meetings accessible (see, for example, Das et al. 2021) and teachers scrambled to make sure their students had the technology and connectivity needed for online schooling. Some programming and research flourished, such as the Minecraft work for neurodivergent students mentioned above (Harrison and Ringland 2021). In fact, the larger concern now as we enter a phase of “new normal” is not to lose much of these advances in online interactions. As many disabled individuals have said, we do not want to lose the ground we gained in accessible interactions via online platforms simply because we are no longer quarantined in the pandemic.
The impact of the pandemic did not just affect work and school, of course. Communities that were already established and flourishing found their membership grow as many more people were seeking our social connection while isolated in their homes. Communities, such as the Autcraft community discussed in our paper five years ago, are still thriving and have become boons during the pandemic. In playful communities and spaces especially, there has been a number of studies looking at social games and their impact on relationships (Pearce 2021). More work is needed to understand the impact of these communities for disabled individuals, especially given the extra need for care as the stressors during 2020 and 2021 have required a re-examination of how we understand care in these contexts (Ringland et al, 2021). As we have seen more awareness of a more disability-centric, trauma-informed understanding of how to research with these communities, it will require new ways of understanding how technology can be “assistive.” For example, this will require theoretical frameworks such as those proposed by Bennett et al. (2018) on designing for interdependence (rather than independence).
The pandemic has also changed our own access to research. Many projects that were originally in-person, including designing, building, and testing assistive technology, have had to shift to online contexts or be put on hold until they can be done safely. This has also forced many of us to reconsider equity in how research is conducted and who our technology is actually reaching. For example, those who are rural or cannot otherwise afford internet connectivity, as those who are disabled are much more likely to be impacted by, how do we design technology to support them? Other questions also arise, such as if students no longer have access to school lunches, but are still facing threats of racial violence against them, what technology (if any) is important to them in those contexts? The pandemic has required researchers to re-examine the status quo for assistive technology and accessibility, with hopefully outcomes for a more equitable future.
Impact of Social Disruption and Social Change
In addition to the pandemic, which has impacted how we do research and what we are researching, we have also seen a broader social shift with our communal relationship with marginalized communities. There has been an explosive growth in online communities centered around disability and neurodivergence. For example, we’ve seen broader acceptance and support of communities such as those found around the “Actually Autistic” hashtag on Twitter (Zolyomi et al, 2020) and the ADHD communities on TikTok (Eagle and Ringland 2021). Platforms such as Twitter and TikTok, for example, have been appropriated for these communities, while not as flexible as modifiable platforms such as Minecraft, are still serving an important link for these groups. This burgeoning interest and social support for neurodivergent communities has been in tandem with broader social movements seeking to rectify racial and gender inequality.
Along with this acceptance and broader understanding of neurodivergence, we have seen a broader recognition and acceptance of many mental health challenges, a health outlet especially given the trauma brought on by the pandemic. This matches with our recent calls to the ASSETS community to integrate mental health more into the design and research of assistive technologies (Ringland et al. 2019).
As we look forward to the next five years, we hope that much of the progress in social technology will stay in place as well as the gains these technologies present for disabled individuals. Our paper five years ago was trying to show the importance of engaging with communities and letting them lead the conversation. By doing this, we were able to open the aperture and see assistive technologies in a broader frame - assistive technologies that Autcraft members were crafting for themselves. There is a powerful expertise that comes from the disabled lived experience. This is expertise the social computing field must honor. Both of us are disabled and we know this from our own lived experience: living with a disability means working within mainstream systems and technologies, creating our own knowledge and expertise to say to tactically navigate and at times subvert systems that either ignore or other us. By centering the disabled experience, as we did 5 years ago, and as we continue to do, we are able to see the vibrant, messy crafty care that emerges in everyday life as people co-opt their environment to make do. We invite you to do the same.
- Kathryn E. Ringland, Christine T. Wolf, LouAnne E. Boyd, Mark Baldwin, and Gillian R. Hayes. 2016. Would You Be Mine: Appropriating Minecraft as an Assistive Technology for Youth with Autism. ASSETS 2016, ACM.
- Jennifer Mankoff, Gillian R. Hayes, and Devva Kasnitz. 2010. Disability studies as a source of critical inquiry for the field of assistive technology. Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility. ASSETS 2010, ACM Press, 3. http://doi.org/10.1145/1878803.1878807
- Matthew Harrison and Kathryn E. Ringland. 2021. Building Inclusive Minecraft Communities for Players With Disabilities and Neurological Differences. Hybrid Pedagogy. Retrieved October 25, 2021 from https://hybridpedagogy.org/building-inclusive-minecraft-communities/
- Christine T. Wolf. 2020. Picking Apart the Black Box: Sociotechnical Contours of Accessibility in AI/ML Software Engineering. In International Conference on Applied Human Factors and Ergonomics (pp. 196-202). Springer, Cham.
- Maitraye Das, John Tang, Kathryn E. Ringland, and Anne Marie Piper. 2021. Towards Accessible Remote Work: Understanding Work-from-Home Practices of Neurodivergent Professionals. Proceedings of the ACM on Human-Computer Interaction 5, CSCW1, 183:1-183:30. http://doi.org/10.1145/3449282
- Katy E. Pearce, Jason C. Yip, Jin Ha Lee, et al. 2021. “I need to just have a couple of White claws and play animal crossing tonight”: Parents coping with video games during the COVID-19 pandemic. Psychology of Popular Media. http://doi.org/10.1037/ppm0000367
- Ringland, K.E., Wolf, C.T., Eagle, T., Weatherwax, K. “Looking for Care in Playful Online Communities.” Workshop: The Future of Care Work. In the Proceedings of CSCW 2021.
- Cynthia L Bennett, Erin Brady, and Stacy M Branham. Interdependence as a Frame for Assistive Technology Research and Design. 13.
- Annuska Zolyomi, Ridley Jones, and Tomer Kaftan. 2020. #ActuallyAutistic Sense-Making on Twitter. The 22nd International ACM SIGACCESS Conference on Computers and Accessibility, Association for Computing Machinery, 1–4. http://doi.org/10.1145/3373625.3418001
- Eagle, T.,Ringland, K.E. “Social Media-Based Community Support for People with Differing ADHD Diagnoses.” Workshop: CSCW, The Future of Research on Online Health Communities: Discussing Membership, Structure, and Support. In Proceedings of CSCW 2021.
- Kathryn E. Ringland, Jennifer Nicholas, Rachel Kornfield, Emily G Lattie, David C. Mohr, and Madhu C. Reddy. 2019. Understanding Mental Ill-health as Psychosocial Disability: Implications for Assistive Technology. Proceedings of the 21st International ACM SIGACCESS Conference on Computers and Accessibility, ACM.