Tag: research (Page 2 of 12)

SCMS 2022: The Serious Business of Accessibility in Playful Community Spaces

This is a summary of the work presented at SCMS 2022. This is cross-posted on Medium: https://medium.com/p/d8ebbe436fa2


Play happens everywhere and is a universal human experience. However, questions of accessibility still challenge many playful spaces. As diverse as people are, there are a diverse set of needs in order to access an activity, interaction, or experience. We find, though, that disabled individuals are often not accommodated in playful places.

I turn particularly to online playful spaces where some disabled people may find the primary source of their interactions. These online spaces become community places, where people with like-interests congregate, form relationships, and have fun. For playful communities, creating access means both grappling with platform design, including appropriation and modification of technology, and iterating on community norms and expectations to accommodate community members.

In this presentation, using data from ethnographies from two different playful communities, I will explore how the platform and community values are entangled and impact not only the playfulness, but also the accessibility of the space [3,6].

Methods

For both the case studies used in this work, I used ethnographic methods where I was embedded as a participant observer in the community for an extended period of time. In each community, I collected data from my own observations, public social media content, and community produced content. This work is qualitative and while I use some mixed methods, such as surveys, I mostly use that to triangulate what I am already finding in my qualitative work. This means that this work goes very deep into some community spaces and narrows in on specific aspects of my work. In order to preserve the safety of the community members, everything is paraphrased, abstracted, or anonymized as appropriate.

I identify as disabled scholar and activist, which means I approach most of my research with a critical disability lens. I look at spaces through a lens of deconstructing ableism that is occurring there, as well as trying to better understand communities from the perspective of making members feel safe, included, and cared for.

Autcraft

The first ethnography was conducted in a community centered around the video game Minecraft — Autcraft — was founded to create a safe space for autistic youth [5]. The Autcraft community uses various methods including modifying game software, leveraging other social media platforms, and adhering to a strict code of conduct for members to address not only the needs of autistic youth, but to accommodate other access needs [3].

The Autcraft community uses a variety of technological platforms in their community, but it is centered around the video game Minecraft. They use plug-ins and modifications to the software in order to make the game more accessible for the players. There are many different ways the community creates “access” through technological means and many of these technological implementations have been iterated on over time.

a screenshot of a Minecraft world with a person’s avatar centered in the middle of the screen. In the lower left corner is a large semi-transparent overlay of the text chat. The text in the box is white and close together.

The majority of communication in the game world happens via text or through avatar interactions, which are quite simplified compared to some other multiplayer games. This was another intentional choice by the community. If the text in the image above were happening live, it could be moving up the screen fairly quickly. While this is still preferred to other modes of communication, it has its challenges and takes some getting used to.

A text chat where the lines are spaced apart by dashes and the title are in different colors, one player’s name is highlighted in yellow.

After learning of a player in the community who was losing their vision, they added a new plug-in to the game in order to make the text chat more accessible. Now the different lines are separated by a symbol of the players choice, such as the dash. Specific titles and the player’s name is also highlighted in different colors. In making this change, the community ended up making text chat more accessible for many of the players.

The reason many people join the Autcraft community is because they had difficulty fitting in, finding friends, or, more broadly speaking, getting access to the play in a Minecraft space. Therefore, for many on Autcraft, being helpful and supportive is one of the most important parts of their sociality. The community has found it important enough to write into their rules and actively encourages this behavior through rewards, such as special titles such as member of the week.

Community describe hanging out with their friends on the Autcraft community much in the same way other youth online have. They spend time with their Autcraft friends online by interacting through forums, instant messaging, and “hanging out” in the Autcraft virtual world. And although not typically physically collocated, these youth on Autcraft consider these relationships to be meaningful friendships.

BTS’s ARMY

The second, ongoing ethnography is being conducted within the ARMY community, the fandom for the Korean musicians, BTS [4]. Much like the Autcraft community, the ARMY community is global. Unlike the Autcraft community, ARMY is a community made of loose-ties and more porous boundaries for community membership [2]. Therefore, how the community engages in play and accommodates access needs of members is notably different from the Autcraft community, as there are no central individuals making decisions about accommodations.

BTS posing with their diplomatic passports in blue suits
BTS posing with their diplomatic passports that they received as envoys to South Korea’s president to attend and give a speech at the United Nations General Assembly in September 2021.

Additionally, because ARMY tends to use public social media platforms, the amount of control they have over the technology is very different from Autcraft. One way the community creates access is by smaller sub-communities using whatever platforms work for them. Smaller groups of ARMY, then, might be found on a modified Discord server or in a group chat. BTS, and the band’s use of various social media platforms, might also dictate what platforms are the most popular among ARMY.

More often, the social infrastructure is altered and iterated upon in order to create access. Specialized accounts to create spaces for disabled or Deaf — or any other subgroup — exist to help foster support and push for more access. For example, as a disabled ARMY, I have been pushing for more alt text to be incorporated in community members’ posts on social media. This also means asking the social media platforms to create more access for users as well.

This sort of activity is important because much of ARMY’s play are fan edits, parody accounts, threads of music and videos, art, and commentary about BTS. In fact, ARMY and BTS often play together, each creating content, communicating via various social media platforms, and share the same goals. The play is very referential, often including layers of inside jokes. For example, there is a plethora of content that explicitly references BTS’s known love for chicken [1].

Selfie at a stadium with a woman with a purple face mask and purple shirt on next to a purple colored chicken badly photoshopped in
Selfie of me with the BTS ARMY chicken at the Permission to Dance On Stage concert in Los Angeles, CA in November 2021.

Like the Autcraft community, ARMY are mindful of social justice issues, especially with regard to access. In both communities, we see how play is both a playful activity, but also an important mechanism for more serious endeavors. This might look like an Autcraft member creating a series of YouTube videos of their game play as an anti-bullying campaign. Or this might be a member of ARMY creating a thread of edited BTS content to highlight the international sign the band used in their Permission to Dance video.

BTS dancing in Permission to Dance music video making "dance" sign
BTS doing the sign for “dance” in their Permission to Dance music video.

Both communities are also doing the work of correcting misconceptions and pushing back against stigma about themselves. These misconceptions occur because outsiders do not understand the community (often harboring sexism, misogyny, racism, and ableism towards both communities). Particularly, because these are communities of play, they are also often dismissed as ultimately inconsequential by outsiders. This is something both communities would vehemently protest, and do.

Creating Access to Play

Together, these studies show how communities leverage their playful qualities to appropriate and modify the technological and social make-up of the group in order to accommodate a diverse set of community members. From this, we are mostly left with more questions about “play” and “access.” Where is play taking place and can we support ideas of play for the sake of play at the same time play is also being used for more serious business? How is access being created in these various social spaces and what can communities do when they are at the mercy of the technology available to them?

In both communities, we see play being the platform for serious, even life-impacting, interests of community members (e.g., anti-bullying campaigns, grappling with both community-wide and individual trauma). With the advent of the COVID-19 pandemic, these communities became that much more important for its members, as they became the only means of socializing and forming relationships with people outside their homes and places of work. These playful communities were not just a place of leisure or a creative outlet. They are also a place to form meaningful connections with other people.

At the same time, these playful communities are addressing various questions of access. In this talk, I started to illuminate some of the ways communities accommodate disabled community members. The work these communities are doing should be noted because how communities play and what that play is doing for members of communities can be a starting point for understanding these otherwise marginalized groups.

And you can watch a pre-recorded version of the presentation here:

References

1. @bock_twt. 2020. Bantam Seoyeondon: BTS ARMY Shenanigans. In 2020 Rhizome Connect Virtual Conference and Convention. Retrieved September 5, 2021 from https://rhizomeconnect.com/2020/expo-hall/shenanigans/

2. So Yeon Park, Nicole Santero, Blair Kaneshiro, and Jin Ha Lee. 2021. Armed in ARMY: A Case Study of How BTS Fans Successfully Collaborated to #MatchAMillion for Black Lives Matter. CHI 2021: 14.

3. Kathryn E. Ringland. 2019. A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, 1–14. https://doi.org/10.1145/3290605.3300518

4. Kathryn E. Ringland, Arpita Bhattacharya, Kevin Weatherwax, Tessa Eagle, and Christine T. Wolf. 2022. ARMY’s Magic Shop: Understanding the Collaborative Construction of Playful Places in Online Communities. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems.

5. Kathryn E. Ringland, Christine T. Wolf, Heather Faucett, Lynn Dombrowski, and Gillian R. Hayes. 2016. “Will I always be not social?”: Re-Conceptualizing Sociality in the Context of a Minecraft Community for Autism. In CHI 2016.

6. Tanya Titchkosky. 2011. The Question of Access: Disability, Space, Meaning. University of Toronto Press, Toronto, Ontario, Canada.

New Article: Finding Community Online in ARMY – ACM XRDS Magazine

I am happy to share that our article for the ACM XRDS Magazine is now available.

“You’re my best friend.”: finding community online in BTS’s fandom, ARMY

The COVID-19 pandemic was a time of unexpected isolation for many, as well as a time fraught with uncertainty. In this article, we explore how many turned to playful online communities across a number of social media platforms as a place of connection and support.

You can find more information about my research with ARMY: https://kateringland.com/btsarmy/

My Commitment to my Community in my Community-Based Research

Just over a week ago, I pulled out of a conference that I was meant to be presenting at this week. So, instead of having a jam-packed week full of presentations and research, I spent the time reflecting (and taking some extremely needed downtime). Now that I’ve taken that time, I wanted to reiterate my commitment to my community in my community-based research.

To be clear: My community in this discussion is BTS and ARMY. I can get a lot more detailed on what that means, but suffice to say this means the people in online and offline spaces who identify as OT7 ARMY. (Happy to talk with you more if you’re curious, just setting the stage for this blog.)

Some of this will be repeating this thread on Twitter and also this thread, but wanted to have one place where this was housed that I (and others) could reference. 

Why Me?

I am an academic (I received my PhD in 2018 and now work as a professor) and I study how people use technology in their everyday lives. My expertise is in social platforms and play. What this means is I study games and other social media, but I also keep tabs on other technology. 

I research communities and focus on how people interact with one another, how they make and keep relationships, and how the platforms they use help people support each other.

I also have a focus on disability and disability activism. I am myself disabled and use that as a lens to approach all of my work.

I work in communities I care about. I’ve written about this in other threads, but this work takes a lot of time/energy and very careful planning. I wouldn’t do this if I didn’t deeply care about this community.

As a disabled, neurodivergent scholar, I am very very aware of what it means to be othered and marginalized. With that experience, I try to bring compassion & understanding to everything that I do.

Why Research ARMY?

I have several reasons.

ARMY is amazing and the amount of work that happens in this community has already been noticed by outsiders. I hope to highlight some of this, as well as finding out how we can design technological platforms to better support ARMY activities.

I study play and care, which are both things that ARMY excel at. I want to help other people see and understand that about our community.

People are already researching ARMY, whether members of ARMY like it or not. I would love it if the people doing the research were actually ARMY, so they could better contextualize their findings. Worse are the people (who we’ve mostly seen in the form of journalists, but some researchers as well) who have a bias against ARMY and seek to prove it through their research. I do research to give a different perspective.

People are dismissive or ARMY. We know this. By having published research, I hope that we can have concrete things to point people to when they are like this. I have found with other groups I have done research with, that having the published research is a way to showing legitimacy in the face of critics.

What Now?

I am currently conducting my research in my day-to-day life as an ARMY. What does this mean? I spend a lot of time observing what goes on around me and reflecting on it. I write a lot. Most of my writing goes unread by everyone except me. However, eventually some of my writing ends up in blogs like this one or articles that get reviewed by other researchers. 

Favorite BTS ARMY Moments

In fact, I have a survey open right now for ARMY to take. I am hoping to combine survey results with my own ethnographic work to improve the reach of my research and to help me triangulate some of my findings.

Survey is here: https://tinyurl.com/BangtanSurvey

I am also extremely committed to making sure ARMY also have all the interesting findings from my work. There are actually lots of things I’m learning and seeing that the research community doesn’t even care about (their loss). So I’m releasing those as I have time to put them together. Here’s an example video I made last week during my downtime.

How Do I Ensure ARMY Isn’t Harmed?

I have taken many precautions in my work to make sure that ARMY and BTS are not harmed to the best of my ability. I’m human and I am sure there will be times this isn’t perfect. However, I still do my best. I’m going to end this article by listing some of the things I have done or plan on doing in this regard.

  1. Transparency. Wherever possible I am transparent about what I am doing and how I am doing it.
  2. Care with who I am sharing any data and what they actually have access to. When it comes to tweets, for example, I do not have any direct quotes from ARMY in my published work. I do not include usernames unless I’ve been given very explicit permission (this has only happened once, for a very specific reason, and I didn’t user the full username).
  3. Making sure the community (and in this case BTS) are discussed respectfully and within community norms. (Yes, I have had to fight on this and I will continue pushing back.)
  4. Ensuring the places I am presenting about ARMY are safe for ARMY. This means pulling out of conferences and publications if I need to.
  5. Making sure there is enough context and historical background when discussing anything about communities. 

This blog will be a living document that I will come back to as needed in order to update as I work. I’m constantly iterating on my process and love learning from my community!


More about my research here: https://kateringland.com/btsarmy

Looking for Care in Playful Online Communities

We will be presenting this preliminary work at the CSCW 2021 workshop, “Future of Care Work: Towards a Radical Politics of Care in CSCW Research and Practice.”

There has been a recent effort to expand how we think about and design for care in digital spaces—including theorizing about care beyond formal or medicalized activities [1, 8, 9]. But there still remains unanswered questions about care in playful spaces, especially for adults. What types of care occur in these spaces? Our study examines this question by exploring fandoms on social media. We define fandoms as playful (online) communities that align around a particular interest (e.g., specific media or a person). Fandoms are meant to be for fun or pleasure and are often entirely separate from other parts of a person’s life, at least overtly [3].

In particular, our study in an ongoing ethnographic investigation of ARMY, a fandom that supports the Korean music group BTS. ARMY and BTS has piqued the interest of both mass media and academia in the past for some of their altruistic engagements including include supporting their community, artists, music, and social causes [2, 6], as well as BTS’s positive impact on mental health [5]. The care activities this community engages in is also bidirectional with BTS and ARMY caring for each other mutually. ARMY engages in many practices of care, even towards members of the band, defending them when controversies arise or posting words of concern for members’ health.

For this work, we are adopting a decolonial lens to understand care activities as relational and epistemically privilege the members of ARMY. This is especially important as ARMY has experienced delegitimization and stigamatization, including through discriminating on the basis of gender or age (e.g., [4, 7]). The need for a decolonial lens is heightened because of the origin of BTS (i.e., Korea) and the diversity of ARMY membership [2]. In this work, we aim to expand our understanding of care both by looking at playful online spaces where adults socialize and seek informal community support and through a decolonial perspective during data collection and analysis.

AUTHOR BIOS
Kathryn Ringland, PhD, is an Assistant Professor at the University of California Santa Cruz. Her areas of interest include human computer interaction, games studies, and critical disability studies.

Christine Wolf, JD, PhD. is interested in the intersection of CSCW, accessibility, and the future of work.

Tessa Eagle Tessa Eagle (she/her) is a third-year Ph.D. student in Computational Media at the University of California, Santa Cruz. She conducts research within human computer interaction and digital mental health.

Kevin Weatherwax is a fourth-year PhD student in Computational Media at the University of California, Santa Cruz. Presently he is researching satisfaction in robot-mediated collaborations, expressive curiosity for interaction design, and parasocial engagements with nonhuman agents as assistive technology for neurodivergent populations.

REFERENCES
[1] Cynthia L. Bennett, Daniela K. Rosner, and Alex S. Taylor. 2020. The Care Work of Access. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. ACM, Honolulu HI USA, 1–15. 
[2] BTS ARMY Documentary Team [@amidocumentary], On Wings of Love [@OWOLMovie], and Research BTS [@ResearchBTS]. 2020. BTS ARMY CENSUS. https://www.btsarmycensus.com/.
[3] Mark Duffett. 2013. Understanding Fandom: An Introduction to the Study of Media Fan Culture. Bloomsbury, New York.
[4] Emily. 2021. Fangirls, Fandom, and BTS – A Letter to the ARMY.
[5] Jin Ha Lee, Arpita Bhattacharya, Ria Antony, Nicole Santero, and Anh Le. 2021. “Finding Home”: Understanding How Music Supports Listerners’ Mental Health Through a Case Study of BTS. In Proc. of the 22nd Int. Society for Music Information Retrieval Conf. 8.
[6] So Yeon Park, Nicole Santero, Blair Kaneshiro, and Jin Ha Lee. 2021. Armed in ARMY: A Case Study of How BTS Fans Successfully Collaborated to #MatchAMillion for Black Lives Matter. (2021), 14.
[7] Lady Flor Partosa. 2021. We Are Not Robots: A Preliminary Exploration into the Affective Link between BTS x ARMY. The Rhizomatic Revolution Review [20130613] 2 (March 2021).
[8] Austin Toombs, David Nemer, Laura Devendorf, Helena Mentis, Patrick Shih, Laura Forlano, and Elizabeth Kaziunas. [n.d.]. Sociotechnical Systems of Care. CSCW 2018 ([n. d.]), 7.
[9] Austin L. Toombs, Shaowen Bardzell, and Jeffrey Bardzell. 2015. The Proper Care and Feeding of Hackerspaces: Care Ethics and Cultures of Making. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI ’15). Association for Computing Machinery, New York, NY, USA, 629–638.

Reflections on the BTS Conference 2021

A view of the galaxy with bright stars and a purple hue.

The month of May is proving to be a whirlwind and we are only 6 days in. But I wanted to take a moment out of my day to write down some of my reflections and experiences from my first ever BTS Conference.I have been to a lot of different conferences over the years, but this one definitely had a different kind of vibe and I loved it. This blog is more my overall reflections of the experience of the conference, rather than getting into the details of the research. If you want to see more of the blow-by-blow of my experience, I’ve added my conference tweets at the bottom of this post.

To get this out of the way…

I will admit that I had some concerns before the conference started given the tension over research in the community and newbie researchers talking to magazine outlets that I shall not name here. A part of my goal for tweeting during the conference (and this blog) was to increase the transparency to which these research activities are to ARMY as a whole. I want concerns and questions about research, the purpose, how it works, what the outcomes are answered before they get to the point that ARMY are only hearing about it after the fact in a media outlet. Fortunately, everyone at the conference (and from what I saw on Twitter) were open, transparent and understanding of one another.

Now the good stuff!

Because the conference was by topic rather than discipline, it had a diverse range of fields and types of people represented (from hobbyists to full professors). For me personally, this is my favorite kind of space to be in. There is something so magical about being in interdisciplinary spaces. Everyone brings their own expertise and backgrounds to the room to discuss specific topics and the conversations that are unleashed are always rewarding. Are there some frustrations and miscommunications? Sure. But by far, diversity and interdisciplinarity is always the best option.

Partially because the audience was both interdisciplinary and not necessarily “academic” (in the ivory tower sense of the word), the content and talks were approachable and accessible. The keynote speech on the first day by Dr. Crystal Anderson set a wonderful tone that I feel pervaded the whole rest of the conference. Right from the start, ARMY as the fans were centered as the experts in this space – not journalists or other academics. And certainly not nameless older abled white male academic whose opinion is so often valued by those outside the community (insert eye roll here).

Researchers studying both BTS and ARMY, at least at this conference, were here because they value both BTS and ARMY – many opened their talks by giving their backgrounds not just as researchers, but as ARMY. It was refreshing. Honestly, between the open passion about being ARMY and the diversity (oh the wonderful diversity) of panelists and attendees really made this the safest I have felt at a conference, ever.

The big take-away from the conference, for me, was: Vulnerability and being open about struggles helps to create a space for us to care for each other (both for BTS and ARMY). In online spaces, there are real people with their own pain and struggles behind the screen. Care is loving yourself & taking care of your community.

Slide with purple text with a title that reads, Balancing Mental Health and Misinformation. The body of the slides says, "Negativity, venting, purpose, belonging, healing... all coexist in the same online space"
A slide from the panel on Balancing Mental Health & Misinformation (in online spaces like Twitter)

The conference organizers (next year’s organizers or other research ARMY organizing these kind of events, feel free to slide me a DM if you want to talk about making the event more accessible) did a wonderful job of setting the tone and I came away with lots of ideas for my own research. I met a lot of other passionate ARMY also interested in furthering the same goals of bringing knowledge to our community. Overall, the whole experience left me motivated and with a feeling that I’m really glad I am both ARMY and researcher. Borahae!

This blog post was fueled by

Understanding Mental Ill-Health as Psychosocial Disability: Implications for Assistive Technology #ASSETS2019

Preview: Psychosocial disabilities can be found in a large portion of the world’s population and consist of different disabilities including mental ill-health such as depression and anxiety. Psychosocial disabilities has been widely understudied in assistive technology research, but there is a great potential for assistive technology to be able to support people with psychosocial disabilities. Our investigation draws on interviews conducted with 18 people who have complex health needs that include mental ill-health. This work highlights the potential role for assistive technology in support psychosocial disability outside of a clinical or medical framework.

What are psychosocial disabilities?

Anxiety, depression, and many mental health concerns can be categorized under psychosocial disabilities, therefore, recognizing the actual or perceived impairments these concerns create in daily life. Importantly, a large portion of the population (1 in 4 worldwide) have been diagnosed with a mental health condition. This does not even consider those who have not been formally diagnosed because they have not sought diagnosis or meet the “threshold” for clinical definitions. Therefore, people with psychosocial disabilities make up a large portion of the world population.

There are a number of issues surrounding psychosocial disabilities that we address in this paper. First, many psychosocial disabilities are experienced alongside physical disabilities. However, a holistic approach to supporting these disabilities is widely underdeveloped and understudied. Medical care, for example, is widely siloed for different disabilities and health conditions with treatment for physical and mental health concerns happening separately. Second, while disabled people often face issues such as stigma or oppression, for those with psychosocial disabilities these issues are complicated by the invisibility and unique history of mental illness and health. As a result, to this day, many people are hesitant to disclose their psychosocial disability and the severity of the impact of their disability. Third, for the field of assistive technology, there has generally been greater attention to physical disabilities than psychosocial disabilities. Our investigation draws on interviews conducted with 18 people with complex health needs (such as having diabetes, heart conditions, or cancer) along with mental health concerns. Our results suggest that mental health symptoms are disabling for these individuals, as they disrupt a number of valued activities and roles. In addition, these disruptions often recur over time, and may be mutually reinforced by physical health symptoms. Yet, despite the challenges of mental health concerns, many individuals avoided medicalizing their mental health symptoms or discussing them explicitly as “disabilities.”

Overview of Study Results

After interviewing participants in our study we found three themes: (1) disabling experience of personal health, (2) how they talk about their personal health, and (3) how they care for their mental ill-health.

Disabling Experiences of Personal Health

Disabling experiences from personal health concerns occurred for our participants across their lives, from both their physical and mental ill-health. Specifically, they had to plan around some of their mental health concerns in order to continue living their lives. For example, one participant knew they would not be doing anything too intensive or stressful during the month of February because they will be upset or depressed during that time.

Taken together, their physical and mental health impacted their experiences of disability, often impacting one another. For example, a participant who was having difficulty walking without an assistive device found the lack of exercise was impacting his depression to her detriment. Being able to use her rollator to go for daily walks helped lessen the disabling impact of her depression.

Talking about Personal Health

The way participants talked about their personal health differed depending on if they were discussing their physical health or mental health. Much of physical health experiences were discussed in a matter-of-fact manner. They used things such as diagnostic labels and they didn’t provide contextual information or circumstances around the physical health issues. In contrast, for mental ill-health experiences, they had a spectrum of ways of framing their concerns. Some did not take up the diagnostic labels. For example, they might describe some symptoms of depression but then insist they do not actually have depression. Others found that the context and circumstances influenced whether they had a specific diagnostic label. For example, they might only be anxious because of their financial situation and not otherwise have anxiety. Partially because of these framings, participants would wait until their mental ill-health was severe or quite disabling before seeking help. These framings and discourse around their mental ill-health also influenced who they would talk to about their mental health concerns. This appeared to be related to worries about issues such as stigma. Some participants were careful which friends and family members they discussed mental health concerns with, while others were even hesitant about discussion with certain medical health providers. Consistently, participants thought carefully about the consequences of disclosing.

Caring for Mental Ill-health

While participants varied in how they thought about and discussed their mental ill-health, they also varied in the ways they took care of themselves with regards to mental health. Because of the broader framing around health, many participants relied on the healthcare system to support and care for their psychosocial disabilities. Participants had a range in how they felt about medication, with some taking medication for mental ill-health and others not wanting to “cover up” their problems with medication.

However, beyond the medical healthcare system, participants all used other self-management practices to help with their psychosocial disabilities. They discussed a broad range of skills including exercise, being social, meditating using applications, posting reminders for themselves in frequented spaces, and cognitive exercises such as thought restructuring (a common therapeutic tool). They used these tools in order to be able to participate in their daily lives.

Neon sign that says "breathe"

Call-to-Action for Assistive Technology Community

Viewing the whole person beyond the medical context.

Our findings indicate that the complex co-occurring nature of physical and psychosocial disability should be recognized, such that ill-health is viewed holistically. Such an understanding requires health professionals to gather and understand rich contextual information about individuals, as would likely occur through recurrent, engaged contact in which individuals can share their personal experience of their physical and psychosocial disabilities. Assistive technologies could support this interaction by facilitating documentation of patterns and experiences occurring outside of health appointments, potentially contributing to care providers’ understanding of lived experiences of both mental and physical ill-health, and their interrelationship, and informing clinical conversations that are more person-centered and responsive to impairments in daily life.

Knowing that stigma may also be a barrier to these conversations, technologies could aim to empower individuals to speak about their psychosocial disability within the health system and more broadly. In the physical health domain, some research has explored how individuals with invisible disabilities manage demands to repeatedly disclose their disability, as well as how this might impact the design of assistive technology. For example, assistive technology may help disclose or partially disclose a disability in order to help a person gain access or get support from people around them as needed (such as business cards explaining a psychosocial disability). In addition, technologies could support individuals gaining skills and experience relevant to disclosing a psychosocial disability. For example, through simulations of conversations with health providers, or by facilitating peer-to-peer communication so that individuals gain positive initial disclosure experiences that empower them to disclose further.

Reframe research and design to match user experiences.

Given the variety of ways that individuals with psychosocial disability use and view labels, and the numerous factors that influence these framings, designers of assistive technology must be mindful of how resulting tools are introduced to people. Framing in terms of “wellness,” for example, rather than mental ill-health or psychosocial disability may increase acceptability. It will also be important to frame technologies such that they appeal to individuals when they are not actively symptomatic, but when they might nonetheless maintain their good health through self-management. Within this exploration of framing, there is opportunity to meet individuals with disabilities where they are and find language and labels that work for them, rather than adopting a top down application of labels common in medicine. Future research might more directly investigate how individuals make decisions about adopting labels related to psychosocial disabilities and mental health diagnoses.

Moving away from a solely medical model of psychosocial disabilities.

Within the assistive technology community, tools to support those with psychosocial disability are rare. However, within behavioral science, interest in the use of technological tools to support mental ill-health is rapidly expanding. Digital mental health is the use of information and communication technologies to improve mental health. However, the majority of digital mental health tools are developed to address mental health concerns from a medical perspective (that is, a focus on psychopathology and symptom control). By viewing technology through this purely medical lens, designers may overlook opportunities for technologies to enhance other aspects of people’s lives. In order to find common ground in medical and social research and design for people with disabilities, we propose bringing the medical and assistive technology communities together to learn from each other. Adopting a view informed by a psychosocial disability model may suggest different outcomes of concern, centering the experiences and values of the disabled individual.


Researchers in medical fields, such as behavioral health, have done a great deal of work in creating support, tools, and care for individuals with psychosocial disabilities. And, in fact, some assistive technology has been based directly off this work. However, more work can be done to help merge a social model view of psychosocial disability with this work in medicalized fields. With a social lens, creating assistive technology for people with psychosocial disabilities can be supportive, empowering, and will re-center people with disabilities, allowing their experiences to be the catalyst of technological change.

handicap sign on pavement, dirty from road

For more details about methods and results, please read the full paper.

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.” In Proceedings of ASSETS 2019. [PDF]

Keeping Safe: Children Online with Social Media and Games

Large statues of Minecraft characters stand on a hill in the game Minecraft.
Statues of the administrators in Autcraft, screen shot from my field work, 2014.

Content Warning: Discussion of child abuse, online harassment, ableism.

Cross-posted on Medium: https://medium.com/@kateringland/keeping-safe-children-online-with-social-media-and-games-9ca60c168cfa

Today, two different items crossed my twitter feed. First, there was an incident involving a player on Autcraft. Second, a research blog was published showing there is no link between the quantity of tech use and mental ill-health in adolescents. I’ve been thinking about both of these postings much of today and I wanted to share some thoughts with you.

Social media and multiplayer games (such as Minecraft that they play on Autcraft) are by design extremely social spaces. That’s the point of them, to interact with other people. This can be a boon, especially for people who are isolated for one reason or another. But, as with anything that has the human element, there can be darkness as well. Games and social media have had their fair share of citations for toxic behavior.

Autcraft was created as a safe haven for autistic children. For the vast majority of community members, it has worked — see any of my other research posts about it. But today, the story broke that it did not work for one child. This child was targeted by another member, who clearly joined the community for malevolent reasons. It’s horrible and tragic and, honestly, I’m continually horrified by the things people intentionally do to one another. Throughout history children have been the target of violent behavior, especially those who are marginalized. Online platforms have just given perpetrators a different means of finding their victims.

Research continues to show that it isn’t the platforms or the hardware (think screens) that causes a problem for youth (and adults even). What continues to be a problem is malevolent people.

So what can we do?

  1. Hold social media and games companies accountable for creating better safety features on their platforms. There’s still lots of room to grow here.
  2. We need more research to study how to keep kids safe in these online spaces, especially marginalized youth. For example, Autcraft is being forced to ban all private messaging between players because of this incident. Is this really the best way to assure player safety? We need more research to find out. This includes funding this research and having the human resources. This sort of work will not only take trained researchers (and/or researchers in training), but also community partners, such as the one I’ve been fortunate enough to have with the Autcraft community.
  3. Better educational sources for both parents and children. Social media literacy is inherently a part of online safety. Children need to understand who they are talking to in these online spaces. Parents need to know who their child is talking to and playing with. It’s okay to not fully understand a game, but basic literacy is essential. Children are playing in what are essentially digital 3-D spaces and feel very physical. Even if these children are never meeting other players offline, there can be real psychological harm.
  4. Create policy. I realize the current political climate is awful. But we need up to date policies to keep our privacy and safety a priority. Right now the tech companies are calling an awful lot of the shots and I promise they only care about the welfare of children if it’s impacting their bottom line. (Also see point 1). Policy can happen both locally and nationally. Call your representatives. Write letters. Run for office.

It’s going to take a village to keep our children safe on the internet. The answer is not to ban screens or games. There’s so much positive happening there. I just hope with a concerted effort we can make more safe spaces for our children to play.

‘Mock’ TV Interview

For this week’s blog, I thought I would share my “mock” TV interview that I did through the RSG program at Medill School of Journalism. Over the next couple of blog posts, I plan on distilling some of the lessons I’ve learned about doing interviews and talk about my experiences – both with this TV interview and the podcast.

Sneak preview: you should have at most 3 core ideas or things you want people to remember no matter the kind of conversation or talk you are giving. If someone is at a BBQ tomorrow and telling other people about their conversation with you (or the talk they heard you give or the interview they heard of yours), what do you want them to be able to remember and relay?

Without further ado, here is my very first live-to-tape TV interview!

My Paper Pipeline

Being early career as an academic researcher, publications are the biggest metric of success (or failure). The saying does go, “publish or perish.” I wanted to share how I keep track of my own publications. This system used to be analog, but I’ve finally gotten to the point in my career where I have too many projects and other floating responsibilities to rely on notebooks or paper calendars alone. This is where Trello has been a life saver. I’ve moved all my project management exclusively to Trello. In this blog, I would like to share my “Papers Pipeline.”

Picard pointing with text that reads "Publish or Perish. Make it so."

For those who don’t know, Trello is a project management platform that consists of “boards.” Boards are then made up of “lists” and the columns contain “cards.” Both lists and cards are moveable within a board. They can just be picked up and dragged to a new location. This makes for really easy task management. Imagine a board for writing a research paper. You might have 4 lists: to do, doing, done, and additional resources, notes, and information. To do list might contain cards labeled things like “draft lit review” or “finish introduction.” As these get completed, you can then move them along the lists from doing (as you’re doing them) and done (when they are done). These boards can have multiple users, so you can imagine the possibilities as multiple coauthors organize themselves around the task of completing a paper. (Yes, tasks can be assigned and there’s a commenting ability, etc.) I plan on having my students use this as a way to keep us all in communication for various research projects.

So, my paper pipeline is a board that I have starred and is at the top of my list whenever I log into Trello. My lists are as follows:

  • Ideas (things that might lead to good papers or seeds for future projects, essentially my “promise box”)
  • Needs reviewing and reworking
  • Data Collection
  • Data Analysis
  • Draft on Deck
  • With Coauthors
  • Out for Feedback (from labmates, etc)
  • Under Review
  • R&R (Revise and Resubmit)
  • Camera Ready (Final version prep)
  • Published (This is a good time to add to your CV!)
  • Dust Bin (Graveyard of papers/ideas that didn’t pan out)

Then within each of these lists, I have cards. There are cards for the start of a potential idea or something I want to come back to after I have finished current work. I rename cards as I go along and the paper becomes more coherent. I add labels for the papers I am lead author on or mentoring students on (thanks, Jen Nicholas for that great suggestion!). I can add notes or links to documents. I also attach other Trello boards that specifically are dedicated to each paper (with those to do, doing, done lists mentioned above).

In this image you can see the different columns or “lists” with each “card” as a different paper.

This method gives a really nice visual layout of the work. You can see right away if there is a backlog of papers on my desk that I need to get out for feedback or to coauthors. I can also quickly assess what’s currently under review (and potentially get a sense for what is coming back soon).

I highly recommend this method for getting organized. What have you found that helps? Are there other great tools that early career researchers should know about?

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