Category: 0x2a (Page 3 of 14)

My World Building: Story of a Disabled Academic

I wrote this blog post over a year ago and have sat on it since then. Today is the 5th anniversary of my most personally traumatic experience with the US healthcare system — the birth of my oldest child. Because of this anniversary I have chosen today to finally push the button and publish this. There is a lot going on in the world right now, but I am honoring myself by giving myself a little space to tell my own story.

Dirt path winding through a shady forest.
Photo by Zack Silver on Unsplash

I have found myself at a cross-roads these last few months. Where am I going to be working next? What kind of work do I want to do next? That’s the privilege of being a researcher with a PhD. I find the problems that are interesting to me, seek out funding to solve them, and then spend my energy doing just that. My recent soul-searching has been brought on because I am working on the latest iteration of my job application materials. How do I want to position myself as a job applicant? What facets of my researcher identity are most important to display?

At the same time as this soul-searching, I have been working closely with my dear cousin Annie. We have been gobbling up readings on Indigenous Studies and methods and thinking about a future research agenda that firmly re-centers disenfranchised communities at the heart of the research agenda, instead of privileging Western science and thought.

To this end, I’ve read Indigenous Methodologies by Margaret Kovach (you can read my twitter thread about it here). One of the key things I’ve learned is that personal story and who you are as a researcher are integral to the research process and to the outcomes of the research. As someone trained in Western science, I’ve been taught to obfuscate myself from the research. Clearly delineate where my data and I are in time and space. But that’s not entirely possible. In fact, in recent papers in my field of HCI, I am seeing more and more scholars (usually earlier in their careers) put “positionality” statements. We are here in our research. We chose our field sites and our data collection methods for a reason. If we are solving problems, hopefully, they are things we are passionate about.

Somewhere along the way, my story had been lost. Perhaps not lost, but very carefully hidden — tucked away only to come out in darker moments with close confidants. My friends and family have joked at how good I am at compartmentalizing. Now, at this cross-roads, I feel the need to reconcile these different parts of my life. I need to be more open about who I am, at least in a small way, in order to tell the true story about my research and my career.


I am bipolar. I was diagnosed at 19 years old during my first year of undergraduate. This is not unusual.

I was only diagnosed after a tumultuous few months of beginning college. Moving away from my parents and friends was hard. Having real autonomy over my own schedule was exhilarating, but also hard. I decided to see the school therapist. This is also not unusual for a first year college student.

The first couple of weeks of seeing the therapist were fine. We talked about my dreams and the stress of getting used to college level work. Then things, as they say, went off the rails.

One day I went to the therapist and said, rather off-handedly, I thought, that was feeling kind of low that day. I mean this was the reason I was seeing her in the first place. But instead of sitting down and chatting about it, she marched me down the hallway to the registered psych nurse. In what became a bewildering appointment, where I mentioned at least once a family history of bipolar (something I had suspected in myself since I was sixteen), I walked out with a bottle full of antidepressants. Turns out this was not a great move on the nurse’s part, but also the quickest way for me to prove my theory about being bipolar [this is sarcasm, I did not take the pills simply to test my mental health].

This was not the first time I had been discounted in my own health care. Women experience this all the time. However, this marked the moment in my life when I went from being mildly annoyed at being ignored by clinicians to experiencing true violence and oppression by the system. And this has followed me ever since.

It took months to get a diagnosis after that incident and was only made possible by my wonderful mother who knew who how to navigate the medical system. It took me additional years to really “recover” from the trauma of that first year of college. There were periods of trying different medications and therapy. Despite my initial engagements with mental health care, I did go back (to other clinics, more carefully researched). But there were lots of ups and downs trying to learn triggers, figure out what was going to work for me and what didn’t, and finding a new normality. Getting through this period of my life did not happen without the constant support of my family, my partner, and close friends. I would argue that I will never fully recover and that the emotional scars from that experience shape everything I do even today.

One real tangible way this has impacted me was my continual marginalization in my own healthcare. As soon as the official diagnosis was in my medical charts, I was no longer a reliable or trustworthy patient. I had “severe mental illness” after all. I was denied pain medication after a root canal. I was ignored by doctors and nurses and almost died during childbirth in what was otherwise a normal pregnancy. Let me say it again: I very nearly died. If it wasn’t for a kind night shift nurse two days after my c-section, I wouldn’t even have been told. I wouldn’t have been given the information needed when planning the delivery of my second child (at a completely different hospital in a different state).

This ripple effect just keeps going. My grades in undergrad were understandably horrendous. I had plenty of teachers and fellow students who didn’t believe in me and told me so. Having my ability and trustworthiness questioned repeatedly has taken its toll. This is, I imagine, what imposter syndome on steroids might look like. Some days I question if what I am experiencing and feeling is real or not — luckily, these days have become fewer and far between in recent years. However, those early days of mistrusting myself and hearing that mistrust echoed all around me still haunt every decision I make, especially the big life decisions.

My anger and pain became fuel. I wanted to do the work to help other people experiencing disenfranchisement. I have had wonderful mentors who supported me as I aspired for a PhD and a wonderful advisor who took a chance on me. I successfully completed a PhD in Informatics within the normative time frame (5 years) while being bipolar and while having two children (and almost dying).

I carefully toed the line in my research. Always studying disability, but never bipolar. Careful to help brethren close to me, but never to reopen those wounds hiding just below the surface. I discovered disability studies and social justice. Suddenly, the world was a better place because there were answers beyond subjugation in a medical context. I could push the boundaries of my own field by showing how oppression is happening right here in our own backyards.

Then I began a postdoc in digital mental health. I told myself I could handle it. It would hit close to home, but that it was going on 15 years since The Incident and my subsequent diagnosis. Unfortunately, I found the experience harder than I ever imagined. All of the sudden there are daily reminders of the “severe” nature of bipolar (because we focus on depression and anxiety). There are small cuts that bring back ghosts of oppression and violence. I lived in fear of “coming out” and the implications of what that means in a space that specifically studies mental illness. And I worried how this will impact my steps forward. How does this change my career trajectory? Can I still do the work I want to do and help the communities who need my help the most?

Those cuts remind me why I began this journey in the first place. I want to go to people where they are and help them. Whether that’s giving them access to healthcare or giving them a safe space that isn’t the institution that is our healthcare system. I want to bring back joy through sociality and play.

Beyond my own body of research, I want to be a mentor to others coming after me facing challenging barriers to their work. My advisor took a chance on me and I want to be able to pay that forward with future generations of students.

I’ll leave you with words 18 year-old me wrote, that, in some ways, are still hauntingly true today:

I am the shadow on the wall in your mind
I am the one gallantly dancing across the brick
But the shadow you see, it can’t possibly be all of me
I have faded into nothing
Becoming the invisible, the ignored, and the tormented
I am the shadow
On the wall In your mind.

Awarded UC President’s Postdoctoral Fellowship

Amidst all the quarantine madness, I realize I hadn’t yet announced what I’ll be doing for work next year! I’ve been award the University of California President’s Postdoc for this coming year. I’ll be working at University of California Santa Cruz in the Computational Media Department.

The UC President’s Postdoc is awarded to a limited number of applicants each year with the hope of improving diversity within tenure track faculty ranks in the University of California system. For the 2020-2021 cohort, there were 1032 applicants and they offered 37 awards. I am extremely honored to have been chosen!

I am transitioning to this new position at the beginning of July and I’ll be working remotely for the present, but I’m looking forward to continuing my research with disabled folks, play, games, and equity! I’ll be posting more in the future both about my experiences on the job market thus far and my plans for future research projects. Stay tuned!

A photo of a close up of a banana slug, “looking” at the camera.

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]

“Do you work for Aperture Science?”: Researching and Finding the Gamer Identity in a Minecraft Community for Autistic Children at #FDG19

Preview: For members of the Autcraft community, they are not only coming to terms with their identity as autistic individuals, but they are also playing with and practicing other identity roles. In this article, I briefly discuss the impact of the “gamer” identity. I also explore some possible implications for researchers who are interested in—or concerned about—games.

Disability and Play

Throughout history, disability has been a part of interactions and relationships in society as a way of creating the category of “other” and, therefore, ensuring the dominance of the category of “normal.” As an aspect of their life, a person’s disability seems all encompassing. This leaves little room for any other aspects of their identity or life. Not only is the person then defined by their inability to interact or engage in the world, but they are then not seen as having ability in anything. This includes those who play games. People with disabilities are seen as not able to play—or maybe not even interested in playing.

In this work I continue to analyze data from my virtual ethnography of the Autcraft community—a community for autistic kids who play Minecraft. You can read more about it here.

Background: Problematic Video Games?

There are a lot of concerns about video games, especially when it comes to children playing them. These concerns range from misbehavior, addiction, and bullying. This is especially true for autistic children. Many researchers have gone to great lengths to show the negative aspects of games for autistic people.

However, while many people don’t realize it, a lot of what is happening in these video games is a very social experience. As I have shown in my other work, the community members of Autcraft are playing with each other, making friends, and gaining confidence in their own social abilities.

Finding Identity

In this paper, I show how not only are the autistic community members of Autcraft embracing their identities as autistic people, they are also embracing and practicing the identity of “gamer.” They post to the forums about games, apply to be YouTube content creators, and embrace other aspects of nerdy game culture.

While they are trying on these different roles, this is complicated not only by their autism, but also by exploration of gender identity, among other roles. This is especially important given how hostile some gaming environments can be for those who are straight men. By focusing on one identity, it’s easy to lose sight of these other emerging aspects of the community members’ lives.

Implications for Research

There are two implications for research from this work.

  1. Promoting pro-social gaming. There has been a drive to understand the negative aspects of gaming, however less has been explored in the positive. Especially for individuals with disability or difficulty accessing other forms of sociality and play, games can be a great resource.
  2. Need for broader understanding of individual players. There is a need to look at players through an intersectional lens. Players are not only gamers (or not, depending whether they adopt this label or not), but also have varying ability and disability, gender identities and expressions, cultural and racial identities, and so on. By narrowing the scope too much, we sometimes will miss the important intersections of these identities and their impact on the person’s access to play (and social interactions).

For more details about our methods and findings, please see my paper that has been accepted to FDG 2019 (to appear in August 2019). Full citation and link to the pdf below:

Kathryn E. Ringland. 2019. “Do you work for Aperture Science?”: Researching and Finding the Gamer Identity in a Minecraft Community for Autistic Children. In FDG 2019. [PDF]

Acknowledgements: I thank the members of Autcraft for the warm welcome to their community. Thank you to Chris Wolf, Amanda Cullen, Severn Ringland, Kyle Lee, and the anonymous reviewers for their feedback on various iterations of this work. Special thanks to: Gillian Hayes, Tom Boellstorff, Mimi Ito, and Aaron Trammell. Thank you to Robert and Barbara Kleist for their support, as well as the ARCS Foundation. This work is supported by the National Institute of Mental Health (T32MH115882). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine.

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!

« Older posts Newer posts »

© 2024 Kate Ringland, PhD

Theme by Anders NorenUp ↑