In the Press: a virtual world without Parkinson’s

Tom Boellstorff and his digital alter ego, Tom Bukowski (image: Steve Zylius / UCI)
Tom Boellstorff and his digital alter ego, Tom Bukowski (image: Steve Zylius / UCI)

There are probably few Second Life residents who keep an eye on blogs and the more well researched media reports on Second Life who are unaware of Fran Seranade’s story.  Now 88 years old, Fran is a keen Second Life resident, who spends time in-world with her daughter and son, enjoying much of what the platform can offer: dancing, Tai Chi, swimming, horseback riding, walking, exploring. All far removed from the physical world, where she suffers from Parkinson’s Disease, which deeply affects her ability to do many of the things we take for granted: such as simply getting out of a chair and walking to the next room.

Fran’s story, and that of Creations for Parkinson’s and their support of Team Fox, the fund-raising arm of the Michael J. Fox Foundation for Parkinson’s Research (MJFF)  first came to my attention in September 2013, thanks to an excellent article in the San Diego Union-Tribune by Pam Kragen. Fran’s story has also been related by Draxtor Despres in his World Makers video series, as well as being featured in numerous other SL-related blogs.

Fran Swenson (Fran serenade in Second Life), seen with her avatar and friends in Second Life
Fran Swenson (Fran Seranade in Second Life), seen with her avatar and friends in Second Life

It is now also the story used to introduce an article appearing in UCI News, the on-line newsletter of the University of California, Irvine, which explores the work of Tom Boellstorff, a professor of anthropology at the university.

In A (virtual) world without Parkinson’s, Heather Ashbach talks to Tom about his ongoing work with Fran and other Parkinson’s Disease sufferers using Second Life, which is now part of a US $276,900 National Science Foundation study that began in July 2015, and will run through until June 2018, examining how on-line environments affect social interaction and self-understanding as well as physical-world experiences of disability.

Tom's work has also been more broadly covered through The Drax Files World Makers #31, which I covered here
Tom’s work has also been more broadly covered through The Drax Files World Makers episode #31, which I covered here

Tom’s work as an anthropologist studying our digital interactions with ourselves and others has already given rise to two books, Coming of Age in Second Life: An Anthropologist Explores the Virtually Human, and Ethnography and Virtual Worlds: A Handbook of Method. With this study, he hopes to build on the knowledge he’s acquired over the last several yeas of study, and also learn which aspects of on-line social interaction are linked to specific disabilities and how differing platforms and devices are utilised.

“Billions of people now participate in on-line environments – social networking sites like Facebook, games, virtual worlds,” he notes in the article. “Since some early human first picked up a stick to use as a cane, persons with disabilities have been at the forefront of technology innovation, so it’s natural that they would be doing creative things in virtual worlds too.”

His examination of Parkinson’s and the effect Second Life has had on those suffering from it is not limited to Fran; the article specifically touches on the lives of Solas NaGealai, who founded the original Team Fox presence in Second Life (and whose story I covered in August 2014), and architect DB Bailey, and they are two among many Tom has talked to within Second Life.

Second Life has provided Solas wearing one of her own gowns
Second Life has provided Solas NaGealai to continue her love of fashion and design, and provided her with the means to directly support MJFF through Team Fox SL.

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, Solas 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 allowed her a way to re-engage in her passion for design, and she founded her own fashion label at Blue Moon Enterprise.

Prior to his diagnosis, DB Bailey was a noted architect who, among other projects, collaborated on the design of Los Angeles’ Walt Disney Concert Hall. Since the disease has forced him to step back from that career, he’s been able to use Second Life as his creative outlet as an architect and artist.

Tom’s work, which has involved in-world and face-to-face interviews and studies, has also touched upon the possible physical benefits some of those with disabilities report as a result of their use of Second Life. In Fran’s case, for example, she his indicated an improvement in her sense of balance and co-ordination as a result of using the platform. This is something Tom has suggested might be down to what is called “mirror neurons“, with Fran’s brain responding positively to the visual stimulus she receives as a result of her in-world activities. However, examining such potential benefits does not form a part of the current study, primarily because Tom is not a medical doctor; but he is of the opinion that they are worth  future examination.

The psychological and sociological benefits of using platforms like Second Life in matters of healthcare are clear, and have been the subject of many studies. With the promise of more immersive VR experiences and opportunities now on the horizon, a better understanding of how different platforms and mediums assist those with disabilities enjoy a richer, fuller life is liable to be of enormous benefit, and also offers an opportunity for broader public discussion on matters of disability and the use of technology.

As Tom himself notes in closing the interview with Heather Ashbach, “disability is a fascinating category of human experience because anyone can enter it at any moment – we’re all just a car accident away. And even if we avoid it, if we live long enough, age will present us with obstacles that limit our ability to function as we currently do. Studying how people adapt through the use of technology helps advance the public conversation on disability and digital technology.”

Altogether, an excellent read, and one thoroughly recommended.

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