“The concept of community is ever-evolving. With the influx of technology and the change in the ways we interact, this discussion is relevant today more than ever. What is equally true is that we carefully construct the communities around us, because in most cases, we need them to survive. They are places where we can form our ideas and dreams. Places we can go for advice and support. People we can look to when we are feeling conflicted. We can rely on our community members to challenge us, support us, love us. When these spaces are safe, they help us to flourish and achieve our goals. And when they are toxic, they severely limit our human potential. Annie remembers first joining the Dwarf Fortress family, and how it wasn’t the complexity of the game that really fascinated her, but rather the massive fan base that really took her breath away. “
Tag: social media (Page 2 of 2)
Preview: Autism is a medical diagnosis that has attracted much attention in recent decades, particularly due to an increase in the numbers of children being diagnosed and the changing requirements for getting the diagnosis. In parallel online communities around autism—both those supporting individuals, families seeking treatment and those supporting embracing the autism identity—have grown. Other work has shown support groups can be useful for those encountering hardship in their lives. In this paper, I illuminate the tension in claiming the autistic identity within this community. The walls of the community work to keep community members safe, but also set them apart from others on the internet. I see that the Autcraft community goes beyond being a support group for victims of targeted violence, to one that redefines and helps community members embrace their own autistic identities.
What is autism and what impact does the label of autism have?
Autism has been the topic of much public concern in recent decades, especially since the sensationalized “autism epidemic” swept through the media. As a medical diagnosis, autism focuses on challenges for individuals; such as whether they are verbal, make eye-contact, or are sensitive to change. Often, as a label, autism is given to youth in order to gain accommodations in school, or for medical treatment. Autistic youth often experience various ways in which this label is used to disempower and disenfranchise them.
This is the case for many youth that are a part of an online community, “Autcraft,” a community centered on a Minecraft virtual world for autistic youth. While those with autism are often the target of harassment and violence in online spaces, the Autcraft community has been actively engaged in making themselves a safe space for youth with autism. Beyond simply keeping bullies out, however, the community has taken the label of “autism” and turned it into something positive—a label worth identifying with.
In the Autcraft community, I have found that the label acts both as a target and as a way for community members to redefine their identities.
Targeting Autism
Concerns over safety of children is an ongoing concern for parents and other caregivers. This is particularly true of those with autistic children, as those with autism tend to be targeted both by their peers and by strangers [32]. Much like other marginalized groups, “autism” is used as a derogatory term. Further, threats of violence can be found across the internet, including in the comments section of YouTube videos, a site used by Autcraft community members. This is especially meaningful as other related work has shown the embodied experience in these online spaces can be as impactful as in physical spaces [29]. Unfortunately, these threats of violence can also result in actual physical harm.
Harassment, threats of violence, and comments about autistic people killing themselves can have a large impact on those targeted, such as additional stress and other psychological harm [22]. The harm, however, does not stop with verbal and written threats. Like other marginalized communities, those with autism face the very real threat of violence against them [14,15].
Here is a video related to these threats of violence in the autistic community at large.
Redefining Autism
There is evidence throughout the
Autcraft community of those who are expressing their autistic identity. Autcraft
community members may be learning to understand and accept themselves or their
child as an autistic individual, but they are also learning to deal with
challenges found outside the Autcraft community where they may not find
themselves accepted and face opposition.
[alt-text for embedded tweet picture: autsome, adjective, Having autism and being extremely impressive or daunting; inspiring great admiration. “My autsome child makes me proud everyday!” synonyms: breathtaking, awe-inspiring, magnificent, wonderful, amazing, stunning, staggering, imposing, stirring, impressive; informal extremely good; excellent. “The band is truly autsome!”]
Adopting “autism” and various forms of the word—as seen in the name of the community “Autcraft”—lends to a sense of identity with others who have the same or similar medical diagnosis. Aside from using “aut” or “autistic” in their user names (i.e., the names that are displayed with their avatars and forum posts, rather than a real-world name), the Autcraft community displays this acceptance through the creation of autism-centric words, such as “autsome.” According to a community post, “autsome” means, “Having autism and being extremely impressive or daunting” and “extremely good; excellent.” Scholars have described how those with disability are often held to a higher standard and those who are “extreme” tend to be held up as inspirational. This type of “inspiration” frames disability as something to be overcome, while achieving difficult objectives. However, I argue that having language such as “autsome” is meant to be inspirational not for others looking in to the Autcraft community, but for the autistic children who are otherwise dealing with a barrage of negative language about autism. This reframes autism as an identity that is worth embracing, rather than overcoming.
Autcraft community members actively work to reshape the mainstream dialog about autism. First and foremost, members try to lead by example, following a set of tenets set out by community founders that encourage and promote good behavior. Community members also engage in outreach to both educate others and to make their own expressions of their autistic identities more visible to others. Members of the Autcraft community engage in activities—much like creating memorials for victims of violence—that purposefully shed light on the hardships they have faced. These efforts are examples of how those with marginalized identities fight back against oppression. As scholars, by listening to these community members and understanding their activities, we can begin to elevate the voices of those who have long been silenced.
For more details about our methods and findings, please see my paper that has been accepted to iConference 2019 (to appear in April 2019). Full citation and link to the pdf below:
Kathryn E. Ringland. 2019. “Autsome”: Fostering an Autistic Identity in an Online Minecraft Community for Youth with Autism. In iConference 2019 Proceedings. [PDF]
Acknowledgements: I thank the members of Autcraft for the warm welcome to their community. Thank you to members of LUCI for their feedback and special thanks to Severn Ringland for his diligent editing. I would also like to thank Robert and Barbara Kleist for their support, as well as the ARCS Foundation. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine. 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.
Our lives are becoming increasingly intertwined with digital technology. People and technology work in tandem to create the context in which we spend our daily lived experiences. We use technology to connect to one another, both in the workplace and during our recreational time. Not only are we using technology to better connect to one another, but also to be understand ourselves.
In the field of Human-Computer Interaction, there is a whole sub-field of ubiquitous computing or the study of computing technology being embedded throughout our lives and society. The ubiquity of technology has been leveraged to help people keep track of their health, in the workplace, and has been commercially very successful for recreational use (Pokemon Go, anyone?).
An emerging field of research is Digital Mental Health, but what does that mean, exactly?
One area of interest is technology that supports (and/or treats) those looking to improve their mental health. This includes mental health apps for a mobile phone or website based care, for example. Technology will not necessarily replace traditional face-to-face therapies, but they could potentially augment them. A therapist might not always be readily available, but an app on a phone could be. Understanding the best way to design these apps is only beginning to be addressed by the research community.
Along the same lines is studying interventions that include technology in and for a clinical setting. This might include creating applications specific for a hospital setting or for out-patient groups. Another example might be building measures and treatments into a electronic medical record system. Users of these kinds of interventions would go beyond just thinking of a “patient” with mental health needs, but also doctors, nurses, and so on. One of the biggest hurdles here is the actual implementation of these tools – getting everyone in the system to actual adopt the technology, maintain it, and continue to use it so that it is effective.
Additionally, understanding the problems that might arise in digital spaces that lead to mental health problems can fall under the purview of “digital mental health.” This might include exploring the potential of “addictive” technology or spending too much time in front of screens. Research in this area might also look at perceptions of technology and how that might impact their use (or abandonment). Further, using some kinds of technology, such as social media, has the potential to be detrimental to a person’s mental health. In my own research, I’ve found that interacting in digital spaces can open up individuals to harassment and bullying.
Finally, understanding how people are already using technology to support their mental health. This includes how people already use technology as tools to support themselves and their mental healthcare needs. Individuals interested in improving their mental health may be using technology in a variety of ways. This includes personal tracking, using other apps, and connecting with others via social media.
Preview: Those with disabilities have long adopted, adapted, and appropriated collaborative systems to serve as assistive devices. In a Minecraft virtual world for children with autism, community members use do-it-yourself (DIY) making activities to transform Minecraft into a variety of assistive technologies. Our results demonstrate how players and administrators “mod” the Minecraft system to support self-regulation and community engagement.
A calming, quiet garden in Minecraft.
“Need a place to calm down? Quiet? Peaceful? Choose a Calm Room to visit here. In these rooms [t]here is no chat. It’s a place to relax. Visit any time.”
If a child finds face-to-face conversations challenging and feels isolated from their peers at school, where can they go to make friends? How can people use currently existing systems to help those with disabilities, including children with autism? We studied how one online community, Autcraft, through a variety of social media platforms, augments and extends current platforms and transforms them into assistive technology for children with autism.
Autcraft is a Minecraft community for children with autism and their allies run by parent volunteers. The goal of the Autcraft community is to have a safe space for children with autism to play Minecraft free from harassment and bullying (for more information visit the Autcraft website). As part of our study, I have been conducting an on-going ethnography within the community (see our paper for details). This study included analysis of activity within the Minecraft server, forums, website, Twitter, Facebook group, YouTube, and Twitch.
Our analysis demonstrates how players and administrators “mod” the Minecraft system to support self-regulation and community engagement. This work highlights the ways in which we, as researchers concerned with accessible and equitable computing spaces, might reevaluate the scope of our inquiry, and how designers might encourage and support appropriation, enhancing users’ experience and long-term adoption.
Autcraft community members have modified Minecraft to do the following to help players internally regulate themselves and externally manage their engagement with others:
- Self-Regulation. Community members use Minecraft in a variety of ways to self-regulate, including both sensory regulation and mood regulation. Dealing with sensory overload can be a difficult experience for anyone with autism, particularly for children and adolescents who are still learning coping skills. Members of the Autcraft community have created spaces within the virtual world and the other platforms to help even the youngest members learn to deal with these sensory needs. Additionally, to help regulate mood, members are able to put into words their emotional experiences, safely share and vent their feelings with others, on the forums and through in-game chat. They can do this in Autcraft without the fear of reprisal from bullies or trolls—which is something they may fear in other online spaces. While this type of behavior may not be unique to Autcraft, the ability to vent in this safe space is possibly unique for the community members personally. They may have communication challenges in their physical environments that limit their abilities to express their feelings fully.
- Interacting with Others. Members of the Autcraft community have appropriated the entire ecosystem of technologies surrounding Autcraft to support interfacing and engaging with others. These efforts support engagement with both the internal community and across community boundaries by supporting sociality explicitly. One mod, teleportation, enables players to jump from one place to another in the Autcraft virtual world nearly instantly. This mod, which can be found on a variety of Minecraft servers, creates a “safer” virtual world experience and to support socialization among community members. Teleportation is available through various waypoints within the Autcraft Spawn area as well as through the text chat window. This teleportation functionality not only enables these quick avatar interactions, but also gives community members an ability that they do not have in the physical world. This helps support empowering these young community members to engage in socialization with their friends, when and where they choose.
Individual players appropriate the Autcraft virtual world to suit their own needs, shaping their virtual environment, embodied experience, and, in time, influencing the overall experience for everyone in Autcraft. As the children worked within the confines of the virtual world to make their environment more usable by appropriating with what was available, administrators are able to then iterate on these appropriated instances to re-appropriate the software itself. Thus, administrators, following the cues of the children within the virtual world, are able to instantiate these appropriations and make them available to everyone on Autcraft.
As a group, children with autism are doubly disempowered: both as children and as people living with disabilities. Here, however, we see how this kind of technological openness allows them to customize and create their own play spaces, a type of autonomy that is inherently empowering. This work explores how designers and researchers can learn by observing how even the youngest of users augment and appropriate mainstream technology to become assistive in their daily lives. This work highlights the ways in which researchers concerned with accessible and equitable computing spaces might reevaluate their scope of inquiry and how designers might encourage and support appropriation, enhancing the individualized experience and long-term adoption of assistive devices and systems. The appropriations we observed in Autcraft point to a future model where child-initiated modifications can guide research and design, providing greater access for disempowered communities.
For more details about our methods and findings, please see our full paper that has been accepted to ASSETS 2016 (to appear in October 2016). Full citation and link to the pdf below:
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. In ASSETS 2016. [PDF]
Acknowledgements: We thank the members of Autcraft for the warm welcome into their community. We also thank members of LUCI and the anonymous reviewers for their feedback on this paper, and Robert and Barbara Kleist for their support. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine.
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Preview: Members of the Autcraft community for children with autism and their allies use a variety of social media platform, centered around Minecraft. The community’s use of various technologies facilitates the expansion of how members can socialize with one another, giving them opportunity to explore their own sociality, expand how they would like to be able to socialize, and deepen their connection with other members of the Autcraft community.
Autcraft community members playing a game together.
“I love being a member of the [Autcraft] community and love spending time with my ‘family’ here. … A place I was accepted for … just being ‘different’ than others.”
If a child finds face-to-face conversations challenging and feels isolated from their peers at school, where can they go to make friends? Online communities have the potential to support social interaction for those who find in-person communication challenging, such as children with autism. Unfortunately, online communities come with their own set of problems – cyberbullying is particularly troubling. We studied how one online community, Autcraft, through a variety of social media platforms, practices and defines how they are social.
Autcraft is a Minecraft community for children with autism and their allies run by parent volunteers. The goal of the Autcraft community is to have a safe space for children with autism to play Minecraft free from harassment and bullying (for more information visit the Autcraft website). As part of our study, I have been conducting an on-going ethnography within the community (see our paper for details). This study included analysis of activity within the Minecraft server, forums, website, Twitter, Facebook group, YouTube, and Twitch.
Our analysis demonstrates how members of the Autcraft community search for, practice, and define sociality. These results indicate more broadly how people may increasingly find new ways to express themselves and create a sense of community as emergent forms of media change the nature of our social landscape. Our exploration of Autcraft adds to a growing body of work about social platforms by showing how flexible, multimodal communications not only “keep the game going” but also can have profound effects for self-expression and feelings of social belonging.
Autcraft community members engage in the following:
- Searching For and Finding Community. Minecraft serves as a bridge or means of entry for members of this community. The game plays a key role, coupled with other forms of social media, in supporting children who are particularly known to struggle with finding social support. Autcraft—including the game, forums, Facebook page, and community-related videos—helps community members to not feel “alone.” Much like for other youth online, Autcraft members describe “hanging out” with their friends in Minecraft. Although they may not be meeting in person, members consider these relationships to be meaningful friendships. Autcraft, by its very nature of blending social interaction with strict rules of behavior and appealing game mechanics, comes together to form a space of cohesion, not difference, and of support, not scorn.
- Defining Sociality and Community. Although Autcraft community members often seek out social relationships through Autcraft as an augment to in-person relationships, some do not wish to seek out these in-person friendships. Those who prefer the majority of their socializing to occur online struggle with what it means to be “social.” Acceptance is a cornerstone to making being “different” more tolerable and reducing the social isolation and loneliness that frequently surrounds difference.
- Practicing Sociality. In practicing their social behavior, social connections are formed and maintained through a variety of media technologies, allowing members to use communicative practices best suited for them, both as individuals and as a group. The community sets the stage for sociality by encouraging members to “Be Kind, Be Respectful, Be Responsible.” On an individual level, Autcraft provides powerful common ground for players, a key foundation to many friendships. Not only do those who join the community share a common interest in Minecraft, they also all have claimed to be either an ally of, or someone with, autism. This is a requirement the community regulates carefully. These two components of the community help lay the groundwork for friendship because they represent part of a person’s shared interest.
By using various platforms, members of the Autcraft community are able to form deeper friendships with one another, if so desired. Being able to foster these relationships across the myriad platforms creates cohesion in the community. Two members may meet through an advertisement on the forums for builders, build a project together, and then go on to create YouTube videos together of the experience. This facilitates the expansion of how members can socialize with one another, giving them opportunity to explore their own sociality, expand how they would like to be able to socialize, and deepen their connection with other members of the Autcraft community.
For more details about our methods and findings, please see our full paper that has been accepted to CHI 2016 (to appear in May 2016). Full citation and link to the pdf below:
Ringland, K.E., Wolf, C.T., Faucett, H., Dombrowski, L., and Hayes, G.R. “’Will I always not be social?’: Re-Conceptualizing Sociality in the Context of a Minecraft Community for Autism”. Proceedings of the 2016 ACM CHI Conference on Human Factors in Computing Systems, ACM (2016). [Acceptance Rate: 23.4%] [PDF]
Acknowledgements: We thank the members of Autcraft for the warm welcome to their community. We would like to thank members of LUCI for their feedback on this paper. We would also like to thank Robert and Barbara Kleist for their support. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine.
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Stigma associated with depression and mental illness is a widespread problem, often leading to negative health outcomes and discrimination for people with these conditions. Common stigma reduction interventions focus on two strategies: education (increasing basic understanding of the condition) and social contact (humanizing or ‘putting a face’ to the condition). These interventions have been explored in various formats, but little is known about the potential of leveraging online social media outlets to reduce stigma. We propose BlueFriends, an application that seeks to reduce stigma by displaying a shareable information visualization graphic aimed at increasing both education and social contact. This application will employ a predictive model of depression detection on Facebook. It will visualize the potential proportion of depression in a user’s online social network and display an interactive comparison of depression prevalence with other common prevalence levels in the US. BlueFriends expands current stigma reduction interventions by leveraging online social environments. By creating customized visualizations that users can share within their network, we hypothesize that Bluefriends will prompt collective stigma reduction and societal depression awareness.
So, I’ve finally found time to write my last day of CHI entries. I was sad to see CHI be over, but on the other hand, four days of solid conference is a lot of conference.
I first attended Vint Cerf‘s talk in the morning (he was one of the inventors of the internet). I thought the whole talk was interesting. He discussed how everything is now going on the internet and it’s important that standards be created so everything can talk to each and talk to the aliens when they come to visit from outer space. The best part of his talk, however, was when he ended the first part of his talk and launched into the necessities of accessibility. Now this just happens to be my area of interest. And apparently, not enough people are interested, unfortunately.
Vint Cerf talks about Computer Conversations
Star Trek and Ubiquitous Computing, Talking to a Mouse
Vint Cerf at the Podium
Slide on Accessibility
I then went the session on Autism. I enjoyed listening to all the papers presented. The first (Why Do They Still Use Paper? Understanding Data Collection and Use in Autism Education by Marcu et al.) covered why teachers and caretakers in schools were still using paper to keep track of all the student records. Basically it comes down to: there is no really good software solution yet for schools. The second paper (TOBY: Early Intervention in Autism through Technology by Venkatesh et al.) was about the Toby Play Pad, which is an app that is meant as an early intervention tool when parents find out their child is autistic. It targets four developmental areas: sensory, imitation, language (receptive and expressive), and social (eye gaze, joint attention). The third paper (Evaluation of Tablet Apps to Encourage Social Interaction in Children with Autism Spectrum Disorders by Hourcade et al.) was on a method to evaluate tablet apps for encouraging social interaction. The fourth paper (Investigating the Use of Circles in Social Networks to Support Independence of Individuals with Autism by Hong et al.) was about social media and using social networks to support youth with autism. This helps shift the burden off over-reliance on the primary caregiver and spreads it around to other people in the youth’s social circles.
In the afternoon, I also attended a panel with Vint Cerf discussing accessibility and what’s currently being done. It’s nice to know some big names in computing are concerned about this and maybe it will get more attention this way.
Finally, here is a slide show of the rest of Paris, in case I don’t get around to a post about that part of my trip:
