This is a continuation of my series of blogs recapping CHI
2019. You can catch up
with the first blog, if you missed it, and the second blog on self-care
at conferences, and the third blog on the social impact of our
research. In this final blog of my CHI 2019 series, I wanted to answer a
Frequently Asked Question: “How are you managing being at CHI with kids?”
The short answer: Not easily. It’s hard. It’s expensive. I have to make tough choices.
The longer answer: I was fortunate enough to be one of the inaugural postdocs to get a grant from Northwestern that helped cover the cost of my mother’s plane ticket. This grant was to help postdocs who have dependents still attend conferences. It’s meant to cover costs such as a caregiver at home or for a child or caregiver to travel with. My daughter is still nursing and has never taken a bottle, no matter how much convincing we try to do. So, we made the choice that she comes with me on my overnight trips until she’s ready to not do that anymore.
What does this mean, really? That every time I want to
travel, my daughter comes with. But if I am presenting or trying to network, I’m
also looking for childcare. It’s difficult to be watching a running toddler
while networking at cocktail hours or staying out late at dinners or
after-dinner drinks. So, for a long international trip like CHI in Glasgow, I
bring my mother who gets to spend time with her granddaughter while I’m off
networking, going to workshops, and giving presentations. I will be real and
tell you that this wasn’t an ideal set-up, but compared to the wrangling and horrible
experiences of going to onsite job interviews with her as a 5 month old, CHI
looked like cake.
I’ve learned to make tough choices. Do I go to this dinner or
an afternoon session? Do I skip the morning in order to be able to stay out
later that night? Do I bring the toddler to the poster session in order to give
my mother a break? Much like other people who have accessibility issues or
other needs, I have to prioritize what is most important to get out of a conference
and not feel guilty or like I missed out on all the rest. And this is above and
beyond the fact that I do have my own
set of physical needs and accessibility issues. I learned very early on in my
PhD that taking care of myself was the most important part and then
prioritizing everything else after that.
I’ve also come to rely on the support not just of my own
family, but of the wider network of Academic Mamas. I’m part of a large
Facebook group, and many smaller groups as well. These women have really helped
me figure out how to navigate the sometimes challenging and strange waters that
is academic life.
My daughter is going to be done nursing soon. There will be a
time, probably in the not so distant future, that I will miss these moments I
got to spend with my children while they were young. While doing my research well
and hopefully getting a job this coming year are important to me, I do have to
stop and recognize that these moments will not be here forever.
And I also would like to take this moment to recognize that
this is very hard. Being a full time
postdoc, going on the academic job market again, and being a mom to two young
children is supremely challenging. I relish the challenge. But I want to say to
other Academic Moms who might be reading this: I see you. This is hard work.
Take a moment to appreciate yourself and all that you do for your little ones.
But on a more positive note, this year at CHI, my advisor,
Gillian Hayes, won the social impact award. You can and I highly recommend
watching the full speech about doing socially impactful work in the CHI
community.
As researchers, we are in an enormous place of privilege to be able to do the work we are doing. This privilege did not necessarily come easily and those that are more junior have to work harder than ever to earn that privilege. We have worked hard to educate ourselves. Speaking of which, if you want the list of recommended books from Gillian Hayes’s talk check it out here. However, the number of articles coming out about grad student mental health (as in, they are not healthy) is growing. Young scholars coming from marginalized groups are finding it more challenging to stay in academia, with many leaving altogether. How can we leverage the privilege we have not only to help the communities we work with, but elevate them? How do we elevate those within our own walls that get discounted or even out-right oppressed? This work is hard, but we do not need to make it so very hard, especially if we have any hopes of increasing diversity.
Social impact in research means building relationships in the communities we work in. And relationships means building trust and a true understanding what people need. My own Autcraft work is an example of how I worked closely with a community to help them understand their practices and they were able to leverage my work to help them reach their own goals.
The road ahead is for you to choose, but remember the choices you make impact everyone.
As a sneak peek: Along with my cousin, the wonderful Annie Forsman-Adams, I am in the process of co-founding a nonprofit organization, The Kaina Institute for Equitable Research, to continue some of my community-based work. There are many paths to doing research that has a positive impact on communities and still furthers one’s own research agenda. Let’s all keep up the good work and push ourselves even further. Let’s see what kind of force for good we can be in the world.
Given that I’ve recently returned from CHI, I thought I would write up a few of my thoughts in a little mini-series of blog posts. Some, like this one, will be related to research, while others will be related more to going to the conference and my reflections on academia and HCI more broadly given my experiences in Glasgow.
One of the opportunities I had this year, as a newly minted PhD,
was to chair a session (that is, run the session of paper presentation,
introduce the speakers, hand out the best paper awards, ask questions if the
audience is shy, and, most importantly, keep to time). It was a fun job and
gave me a chance to engage with the speakers for some great papers! So, I
thought I would recap some of the highlights about play and technology that
piqued my interest during the conference.
These papers give a us a road map forward in terms of understanding children’s play in the 21st Century. What most excites me about this work is I can see the opportunity here to be inclusive. Children with disabilities can benefit from augmenting environments with technology. I have seen this in my own work and I can see the natural extensions of some of the work above to move into disability spaces. In fact, Microsoft seems to also be moving a similar direction with the announcement of augmented reality Minecraft. This space is new and exciting, and I think with a little forethought and care we can make this inclusive for everyone.
The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces
Preview: Play is an important part of childhood that is often inaccessible for children with disabilities. This work looks at how Autcraft, an online community for autistic children, uses different social media and games platforms to enable access to social play. First, the spaces the Autcraft community uses make the place that is Autcraft possible. Second, these spaces, though some of them are digital, are no more or less “real” than the physical spaces making up a schoolyard or playground.
Social play is an important part of childhood. It is how children develop and practice their social skills. Children engage in a wide range of playful practice roles and test the boundaries of social rules. These playful interactions are vital not only for children to grow into competent, functioning adults, but also to discover who they are and what kind of adults they want to become.
Disabilities and Access to Play
Disability is created when a person is trying to interact with the world and are not accommodated by their environment. An example of this would be a child who wants to play on a playground, but they cannot roll their wheelchair into the space. Access and disability are inextricably linked. Access, in general, is not a given experience for any single individual. Disability is created in the moment that access is faulty or denied to a person. What this means is that disability is not created within a person.
Because a person’s body and their environment are constantly changing, disability is not happening all the time, but rather, a person is disabled by the context with which they are trying to engage. As disability scholar Tanya Titchkosky states, “While we all have bodies — bodies that we act, sense, feel, or move in and through — only some bodies, only some of the time and only in some places, are understood as disabled ones.” Access, therefore, is dynamic and ever shifting.
Accessibility signs in front of rough, grassy terrain.
For children with disabilities, including autistic children, access to play is often limited or of low quality. One way to help autistic children gain access to play and socialization is through online spaces, such as social media, games, and virtual worlds. This paper extends previous work in this area, by exploring the disabled experience and how that affects access to play.
Access is really only noticeable when it is not available and creates disability. The disabled body becomes the oppressed body, when they are denied access (advertently or inadvertently), not only in a social sense, but also in a literal, physical sense. Children who do not conform to “normal” and “normal play,” then, are not invited to the game. This is done both literally and through the making play objects that a disabled child cannot use.
Among other activities, individuals with disabilities use online spaces to socialize — empowering themselves to do what they may not be able to in the physical world. Online spaces have different ways of creating access from physical spaces. In this ethnographic work, I explore how one community uses the sense of place and the digital experience in Minecraft specifically to give autistic children access to play with their peers. In this sense, they are using Minecraft to mediate their play experience, just like a physical world playground mediates another kind of play experience. One type of mediated experience is not better (or less mediated) than another. Rather, these experiences, from face-to-face to text to avatars on a computer screen, are diverse kinds of experiences. Simply put, playing in Minecraft with friends is still social play, even though it might look different from playing in a physical playground.
For this work, I studied Autcraft. 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 this study, I have been conducting an on-going ethnography within the community (see my paper for details). This study included analysis of activity within the Minecraft server, forums, website, Twitter, Facebook group, YouTube, and Twitch.
The Different “Spaces” of Autcraft
In this work, I found the Autcraft community actively creates access to social play using a variety of social media and other technology. By looking at the entire constellation of social media in the Autcraft ecosystem, we can understand how community members are engaging in a variety of social play experiences.
Access to the Autcraft community happens through three layers of interconnected environments: physical, liminal, and virtual. The physical space includes computer hardware and the environment in which players access the computer. This would be things like a bedroom, home office, or computer lab in the library. The liminal space includes the installation and configuration of the software, as well as user authentication. Finally, the virtual space includes the various social media.
When combined, these spaces allow play to happen because the children have access to play in a context in which they “fit.” When educators, therapists, parents, and researchers privilege face-to-face interactions, they are, in effect, creating disability in children who cannot or will not play in that way. In the Autcraft community, members can recreate the playground in an environment that is more comfortable for them. Community members leverage technology to create a playground where children are most able to play. And, having done this, autistic children engage in social play of which people thought them incapable.
The Autcraft community has used a constellation of platforms to enable social play for autistic children. Here the Autcraft community is using the constellation of technological platforms to help create the sense of place. These platforms cross into physical, liminal, and virtual spaces, working together to create access to play. Here the Autcraft community have leveraged virtual worlds to their advantage — in essence, transforming the disabled play experience into an enabled one.
How someone interacts with others is meaningful, regardless whether that interaction is online or offline. For the autistic children of Autcraft, playing in online spaces is preferable to physical-world, face-to-face interactions. The Autcraft community has defied the conventions set out by many educators, parents, researchers, and therapists by creating a space that privileges digital engagements over physical-world ones. In doing so, they have made a playground that is more comfortable for many autistic children.
Children need a place to play. There are two things to consider: creating a sense of place and allowing for both the real and unreal in these places. Therapists, educators, parents, and researchers tend to privilege the physical realm over all others for mediating sociality. Members of the Autcraft community turn this notion on its head, instead privileging virtual interactions over physical ones. But further still, I have shown how all these spaces — physical, liminal, and virtual — must work together to make play possible. The spaces the Autcraft community uses make the place that is Autcraft possible. These spaces, though some of them are digital, are no more or less “real” than the physical spaces making up a schoolyard or playground. Ultimately, it the sense of place in Autcraft that gives children access to social play.
A Minecraft sheep with hearts around its head.
For more details about my methods and findings, please see my paper that has been accepted to CHI 2019 (to appear in May 2019). I am pleased to announce that this has received Honorable Mention (top 20% of all papers) Full citation and link to the pdf:
Kathryn E. Ringland. 2019. A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces. In CHI 2019. [PDF]
Acknowledgements
I thank the members of Autcraft for the warm welcome to their community. Thank you to Chris Wolf, LouAnne Boyd, and Oliver Haimson and other members of LUCI for their feedback on various iterations of this work. Special thanks to Severn Ringland for his diligent editing and Kyle Lee for insights while writing this up. Shout out to my dissertation committee who helped me shape my thoughts: Gillian Hayes, Tom Boellstorff, Mimi Ito, and Aaron Trammell. I would also like to thank 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.
Players hanging out together in the Autcraft virtual world.
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.
March 1st is the Disability Day of Mourning when we honor those with disabilities who are the victims of filicide.
Across the United States, approximately 12% of people have a disability. People with disabilities are more likely to live in poverty and become the victims of crimes. Every year, people with disabilities are murdered by their parents, family, or caregivers. 650 people with disabilities have lost their lives in this way over the last five years.
On March 1st each year, we hold the Disability Community Day of Mourning to honor and remember those who have been victims of filicide — both adults and children with disabilities who have been murdered by those closest to them.
While vigils are taking place across the globe, memorials are also occurring in online spaces as well. [short video of character in Minecraft to show how it works] In the virtual world of Minecraft, there are communities created specifically to be safe spaces for children and adults with disabilities. One parent in the Autcraft community has created a memorial commemorating the names of those lost to filicide. [a screenshot or two of the memorial]
While communities, like the Autcraft community, do a lot of outreach to educate others about anti-violence and anti-bullying and work to create inclusive spaces, more can be done to help marginalized individuals.
To find out how you can help visit the Autistic Self Advocacy Network website and download the anti-filicide toolkit.
Sullivan, P. M. (2009). Violence Exposure Among Children with Disabilities. Clinical Child and Family Psychology Review, 12(2), 196–216. https://link.springer.com/article/10.1007/s10567-009-0056-1
Ringland, K. E. (2019). “Autsome”: Fostering an Autistic Identity in an Online Minecraft Community for Youth with Autism. In iConference 2019 Proceedings.
In the medical sciences, such as Psychology, it seems that additional training after earning a PhD via a postdoc is much more the norm than it is in fields such as HCI (although with the academic job market being what it is, postdocs are just becoming more common across the board). NIH has a number of grants for scholars to apply to at the various stages of their careers. Briefly, these are:
Training Grants such as the K and T
R
P50
They even have a handy infographic of how this breaks down over a career.
https://www.nidcd.nih.gov/training/awards
Basically, the grants are set up such that when you graduate with your PhD, you have a T lined up to do for up to 3 years. Then, while working in the T, you are applying to your K. The K then gives additional mentorship and training years as you transition into independent faculty. Finally, as you advance in your career, you are well-set up to apply to larger grants, such as the R01.
The T32, specifically, are training grants that include research activities with mentors, as well as training in grant writing, publishing, and career planning. Teaching is not an expected part of early career training, under these programs.
Two of the postdocs are from fields in Behavioral Health and two of us are HCI-oriented. We are then able to cross-train each other in our respective disciplines. We are also working closely together on projects, often with a Behavioral Health lead and an HCI lead. This gives us a chance to learn enough of another discipline to work on these projects, have some publications in venues appropriate to each field, and widen our breadth of our research.
This training grant is also an opportunity to know our own discipline more deeply by having to teach outsiders some of the nuances and our language. This has been especially enlightening to compare publication cultures, with HCI being a field that values our conference papers as compared to Behavioral Health, which is journal-oriented.
This postdoc fellowship has been a unique experience for me, as an HCI scholar. I am learning how to work on interdisciplinary teams, find common ground, and bridge our scholarly work in order to meet our shared goals.
How to handle multiple authors, get a your paper written, and not drive everyone crazy
For those just starting out in the paper writing process: Welcome! It’s an exciting journey! In the field of HCI, having multiple coauthors is normal. So, in the spirit of helping everyone out, here is a handy guide to help manage the project of getting a paper written when there are multiple coauthors. (And honestly, some of this is probably good if you’re solo on a paper, too.)
Versioning: how will you handle multiple versions of the paper?
Where will they be stored? Who will have access to them? What software will you
be using?
Along with versioning, set clear norms around document names and
stay consistent for the entire lifecycle of the paper.
Authorship: clearly identify tentative author order,
explain community norms to outside authors, establish expectations of %
contribution
This also means establishing when various authors on the
team will be involved. Some may come in at the end to shape the discussion
while others might help with literature review. This should be decided upon now
to avoid surprises down the road.
Set deadlines. Be flexible. Know that everything will probably
take 3x longer than you expect.
Step 2. Early-stage
Drafts.
Adhere to versioning established in
step 1.
Co-writing or tandem writing is fine for
early stages of writing. This includes splitting up the sections between
different authors. Be sure everyone is aware of what everyone else is doing to
avoid doubling up on the work.
When making big conceptual decisions
about the paper, consult all of the authors involved for feedback.
Step 3. Later-stage
Drafts.
After some agreed-upon time (as most sections are filled in, for
example), move to writing in sequence, rather than parallel. This helps avoid
having a choppy sounding paper and makes sure things like the overarching
thread is pulled throughout the paper.
This means someone will have the “lock” on the paper. Establish
norms around how this is specified and handled. This can be a simple “I have
the lock” to the group via email (or slack), meaning no one else should be
working on the draft. Or using file names in the shared folder to indicate when
a draft is “in progress” or “done.”
Step 4. Final Draft
& Submission.
Congrats on getting to a final draft!
Be sure all authors have signed off on the final version before submitting.
Be sure to send the final version after
submission for everyone’s records.
Step 5. Revisions
& Camera Ready.
Co-authors are great for sharing the
joy of an acceptance or commiserating over a rejection. Be sure to be clear about
who will be helping with revisions if needed.
If a paper is being resubmitted to
another venue, this entire process starts over again. Good luck!
*Other Thoughts*:
Clear, frequent communication is key.
Ghosting your co-authors isn’t cool.
This process is hard and everything I
mentioned above are skills. That means the only way to get better is
through practice.
What other things are important to remember about the writing process? Leave a comment below!
I’m happy to report my paper, “A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces” has been accepted to be presented at CHI 2019 in Glasgow, UK. Below is a link to the PDF. Stay tuned for a blog about this article.
