In January 2016, I wrote about an interview with Tom Boellstorff (Tom Bukowski in Second Life), a professor of anthropology at the University of California, Irvine, and which appeared in that august body’s newsletter, UCI News.
Within A (virtual) world without Parkinson’s, Heather Ashbach discussed Tom’s work, touching on the fact that it is now part of a National Science Foundation funded study examining how on-line environments affect social interaction and self-understanding as well as physical-world experiences of disability. Having commenced in July 2015, this study will run through run through until June 2018, and one element of the work is currently taking place in Second Life at Ethnographia Island. Jadyn Firehawk, one of the participating artists in the Ethnographia Island study, IM’d me about it, prompting me to hop over and take a look.
The formal title of the research at Ethnographia is Virtual Worlds, Disability, and New Cultures of the Embodied Self, and Tom is co-Principal Investigator alongside Donna Z Davis (Tredi Felisimo in Second Life), a strategic communications professor at the University of Oregon. Donna specialises in mass media & society, public relations, strategic communication, virtual environments and digital ethnography. The work they are undertaking focuses on the experiences of people with disabilities who are using immersive virtual spaces to represent themselves free of the shadow of any disability, and do things they may not be able to do in the physical world.
In their introduction to the work, Donna and Tom describe it thus:
Since some early human first picked up a stick to use as a cane, people with disabilities have been at the forefront of technology innovation. What can their creative uses of and adaptions to on-line social interaction teach us? The researchers will explore this question by studying how people with disabilities create and interact socially in virtual worlds, and how they use different kinds of devices in their homes to experience these on-line environments.
Twenty 32×32 metre studio parcels have been made available to applicants with disabilities, who have been invited to share their experiences, insights, and thoughts on their disability: what impacts has it had on them in terms of their experiences, social interactions, dreams, and how have they used it? How have they used it to change their experiences living with that disability?
How applicants use their space has deliberately been left open, although some pointers were given as to how they might think about using it: for expression through 2D or 3D art, thought media presentations / displays, as a space in which they can develop art or expression through external media such as blogs, or the creation of interactive spaces designed to give others insight into their experience or as a game – or any combination of these ideas.
The result is a series of studies, widely varied in nature and content, some of which – such as Jadyn’s own Reconstructing Identity After Disability. This is a beautifully presented and moving story of how she has come to deal with her bipolar disorder after the condition left her unable to continue in her career as an assistant professor at the University of Texas, Austin, and how the use of virtual spaces in Second Life and the friends she has made here have empowered her creativity in both the digital and physical realms.
“When I sent in my application to participate in the project, I did not know yet what I wanted to build,” Jadyn says of the installation. “All I knew was, I wanted to create an installation that somehow represents the many-faceted, (re)enabled life that SL has made possible for me, but I had no idea exactly what I was going to build.
“I started looking back in my inventory to things that dated back to my earliest days in SL, and realised it essentially documents my entire time in SL. From that I got the idea of perhaps doing my build as a sort of museum exhibit, telling the story of my time in SL.”
Involvement in the project has been both cathartic and insightful for Jadyn, providing her with a clearer view of the last fifteen years of her life, the changes her condition has wrought and a understanding of ow she has come to terms with it.
“I met Tom and Donna through the Parkinson’s disease support group at Creations Park four years ago, and I’m thrilled to be taking part,” Solas NaGaelai says of her involvement in Ethnographia. “Not just for the creative aspect but to be amongst others that have disability. I have a hunger for learning and adapting, and from what I see so does each individual involved in the project. The insight of dealing with their life challenges to me is a very enlightened experience, and helpful one.”
Solas was diagnosed with a particular form of Parkinson’s Disease known as Young Onset Parkinson’s Disease (YOPD) – the same form of the disease which struck Michael J. Fox. When first diagnosed, she was a full-time fashion designer. However, as the illness progressed, she was forced to leave that career behind. Fortunately, her discovery of Second Life provided Solas with a means to re-engage in her passion for design, notably through her Blue Moon Enterprise label.
For her piece, Solas has created a model based on Edmund Blair Leighton’s 1901 painting The Accolade. It’s an interactive piece in which visitors will be able take free costumes she has designed and dress as either the queen or the knight and take their places within the scene. As such it reflects both the creative freedom Solas has found in Second Life, and offered her the mean to present visitors with the opportunity to share in her love for a bygone era, as depicted by Leighton and his peers.
Virtual worlds, as Tom and Donna note, are just a part of the much larger domain of internet technology and on-line presence which we can use to define ourselves and potentially reach beyond our personal limitations, whatever form they may take. But studying the “whole” of the digital environment really isn’t that possible; as such, smaller scale studies like Virtual Worlds, Disability, and New Cultures of the Embodied Self allow researchers to focus down on smaller communities and groups and investigate specifics.
Through it, and the involvement of those participating in it, both Donna and Tom are confident they will be able to present a better understanding about how new on-line technologies influence how we think about our bodies, how we think about social interaction, and how we think about the role of the internet in everyday life, all of which will have implications for improving health care and social support for people with disabilities.
Visitors are welcome to tour the installations, and I recommend taking a look at the accompanying website when doing so – the links are given again below for convenience.
STOP PRESS NEWS
Having opened its doors in November 2015, Ethnographia Island had originally been set to run through until March 2016. However, as I worked on this article, Tom and Donna were in discussions concerning additional funding for the work.
On Friday, February 19th, they were able to tell me that the funding had been confirmed, and that as a result, Ethnographia Island is set to double in size with the addition of a second region.
“This means not only more spaces for individual disabled folks to have parcels for some creative building, but also some larger, collaborative parcels where groups of people with disabilities can let their imaginations run free!” Tom said as they passed on the news to me.
So, if you have a disability of any kind and would be interested in a parcel, please IM Donna (Tredi Felisimo in SL) or Tom (Tom Bukowski in SL), or email them at firstname.lastname@example.org or email@example.com. They would love to have you participate!
SLurl and Website Details
- Ethnographia Island (Rated: Moderate)
- Virtual Worlds, Disability, and New Cultures of the Embodied Self
This article is a joint presentation with the March Edition of Windlight Magazine.
5 thoughts on “Exploring disability, new cultures and self in a virtual realm”
Very interesting article as always! Glad to have this piece in the latest edition of Windlight Magazine
Thank you so much for writing this, Inara! You’re the best – great article.
Thank you Tom, Donna, Jadyn and Solas for your time and input to the piece. Looking forward to further visits to Ethnographia as things grow.
a wonderful article- technology has taken the world of imagination into a whole new realm which though I sometimes have thought has it’s downside, in this case has freed those with disabilities to develop their talents in a whole new way.
I went to my first Ethnographia Island meetup this morning, and I will be going back. Thanks for the writeup!
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