Fran’s Story

Fran’s Story: Please watch, and enjoy the Drax video to learn more about Fran, Parkinson’s Disease, Creations Park, and the benefits of participating in Second Life (SL), a virtual world.

The Drax File: World Makers – Episode 13 Creations for Parkinson’s

https://www.youtube.com/watch?v=nyiiWxNguGo&feature=youtu.be

Or please read the following articles regarding Fran’s experiences with Parkinson’s Disease, and her role in Second Life.

Thursday, September 10, 2015

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“This is Who I Am”: Why a Woman With Parkinson’s Sees Both Her SL Avatar & Her Physical Body as Real (Excerpt, Coming of Age in Second Life)

Fran Serenade Parkinsons Second Life

Coming of Age in Second Life, the award-winning book by anthropologist Tom Boellstorff, now has a second edition with a new preface, and it tells the inside story of Fran, a woman with Parkinson’s Reports who’s reported significant physical recovery from using Second Life. I was fortunate to first learn about Fran in 2013 from Tom, and even luckier that he’s letting me run a related excerpt from his book:

An island dance

I first met Fran on Namaste Island, next to her daughter Barbie and some other friends in a cabin with wooden walls. It was a support group for people with Parkinson’s Disease; I do not have Parkinson’s myself, but was conducting research about illness and disability. That is why I found myself sitting in this circle with Fran as our leader, sharing troubles, joys, challenges. I will never forget when Fran said “I was diagnosed with Parkinson’s Disease about six years ago. And when I got my diagnosis, it was like a punch in the gut.” Yet Fran not only supported others, but kept active on Namaste Island: “I’ll just walk around, go to the beach, even go horseback riding.”

NEXT: CREATING — AND BECOMING — HER AVATAR

Coming of Age in Second Life Tom Boellstorff

Image by Anthea Beletsis

My first dance with Fran was on this island too. It was at the Phantom of the Opera Masquerade Ball, a benefit for Parkinson’s Disease charities held in a high-ceilinged ballroom that was all chandeliers and marble, with a tiled fountain in the center. I bought a new tuxedo for the event and my shopping excursion meant I arrived a little late. Right away I saw Fran in her luxurious red ball gown, complete with long red gloves, a necklace glittering with red and white stones, hair done up in blond curls, and an elegant white-feathered mask. Next to her was Barbie, whose gown shimmered blue and violet, every bit as breathtaking. Fran and I spun around the ballroom, song after song. At one point she looked at me and said “It thrills me to see me dancing. This is who I am.”

Did you already guess that Fran and I were dancing not in the physical world, but in Second Life, a virtual world (Figure 1)? What you might not have guessed is that Fran was 85 years old when we first danced (Figure 2):

Coming of Age in Second Life Tom Boellstorff w Fran

Image by Tom Boellstorff

That is not the typical image of someone in a virtual world, and Fran was not the average Second Life resident, but anthropologists know that “outliers” can teach us a lot about the norm. Think with me like an anthropologist for a moment. When Fran said “this is who I am” while describing her avatar, she was not in denial about her physical body. She was saying that her virtual and physical bodies were both real, each in their own way. In this regard Fran was not an outlier at all. Her views captured beautifully a set of beliefs and experiences I commonly encountered in Second Life and other virtual worlds, and that other scholars have described as well. We should thus listen carefully when Fran said that being in Second Life was:

Greater than great, okay?…when I’m doing things like, I will dance… and I’ll watch my legs, and while I’m sitting here [in the physical world], my legs will be doing what I’m doing there that I cannot do here. I would fall on my face if I were to do something like that… I watch myself and I get thrilled that I am dancing! You see, I don’t think of me sitting in this chair: “me” is the person on the computer.

Her understanding of both virtual and physical bodies as real goes back to the first time she created her avatar with Barbie: “I said to Barbie ‘make me blonde’ and I am grey, and ‘make me young’ and I’m old, and so I do not look like my avatar at all. But if I look at her, I see Fran. I guess that’s who I am if I take a zipper and pull her out of me, that’s who I am.”

The difference between Fran’s physical body and avatar body was not about hiding anything, and she often talked about her “fabulous” life in the physical world. She was not denying her physical body and was certainly aware of her Parkinson’s Disease every day. Instead, Fran was taking advantage of a virtual world to make a reality in which her physical body was not her only embodiment. Over and over, Fran insisted that Second Life was as real as the “real world.” As she once put it, “Actually I feel like this is more real-world to me than my real world.” Her experience of having an avatar body was real, the places in Second Life where she spent time were real, and her relationships and activities in Second Life were real. All these aspects of virtual world social interaction were distinct from the physical world, but there could be influence between them. Barbie, Fran’s daughter offline, could be Fran’s friend online and their shared experiences were real. In the other direction, people Fran met online could become real friends, whether they socialized only online (because the person might be thousands of miles from Fran’s home) or met in the physical world (as happened, for instance, with me).

What we learn is that as with other Second Life residents, Fran’s physical body and avatar body were both aspects of her reality. The avatar body made it possible to wear a ball gown and go to a virtual ball—on occasion, to be asked to dance by young men who might not have taken the time to get to know Fran had they met her only in the physical world. It allowed Fran to run a support group for people with Parkinson’s Disease who were scattered across the physical world. If we pay careful attention we learn something else as well. What is important is not just the avatar body, but the virtual world that avatar body inhabits (Boellstorff 2011). It is not just the avatar body dancing, but a ballroom to dance in; not just a support group, but a wooden cabin on Namaste Island where the group can meet. This aspect of virtual worlds—that they are places—is a topic discussed at length in Coming of Age in Second Life. It is a great example of how not all aspects of online technologies are the same. You do not have this shared experience of place when texting on a mobile phone or emailing from a laptop, though both of these forms of communication are real in their own way.

Note that I do not contrast Second Life (or other aspects of the internet) with the “real world.” Instead I talk about the “physical world” (or the “actual world”). Why? Because things online can be real or unreal, and the same goes for things in the physical world. You can learn a language online, or make a friend, or lose money playing poker: all real. On the other hand, you can put on a costume and engage in play or fantasy without ever using the internet! One topic I address in Coming of Age in Second Life is the reality of virtual world identities, relationships, and cultures—and what this tells us about the human journey in a digital age. Fran’s conclusion that what she was doing in Second Life was real was consistently shared by others I met during my research. You did not always do “real things” in Second Life (you could pretend to be a dragon, for instance), but even such roleplaying and fantasy was only possible because the broader virtual world was real.

Excerpted from Coming of Age in Second Life: An Anthropologist Explores the Virtually Humanreprinted with permission of the author.

Published on Nov 1, 2013

“My avatar represents how I truly feel inside” says 86-year old Fran Seranade. And despite her Parkinson’s condition she navigates her blond, blue-eyed, and stunningly dressed digital alter ego with bravura through the immersive universe of Second Life: one moment she is a mermaid and another she ice skates with her friends in winter wonderland.

More News:

http://nwn.blogs.com/nwn/2013/02/second-life-killer-app-help-disabled.html

Wednesday, February 13, 2013

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Second Life’s Best (Perhaps Only) Killer App: An Immersive, Open-Ended Social Platform for the Disabled

Fran Serenade Parkinsons Second Life

One point stood out strongly for me in last week’s post about Fran, the 85 year old woman who believes using Second Life has helped recover some physical ability despite her Parksinon’s. This from her daughter, Barbi, who built a place in SL for her mother and their family (her brother, like her, also plays Second Life) to share and support others with Parkinson’s and their caregivers:

She feels and thinks young, so it is thrilling for her to watch her avatar run and dance again (very much like the movie Avatar). She loves meeting fascinating people from all over the world. Fortunately she is a basically happy person and has never been depressed, but SL increases the joy in her life.

This is the case even if Fran’s physical recovery experience is only unique to her, and it’s a theme repeated by many other SL users who are disabled in real life in some way or another, be it a support group for people with cerebral palsy or military veterans suffering from PTSD (often in addition to physical wounds that confine them physically as well). Many other examples abound, with the commonality being the immersiveness from Second Life’s realistic 3D graphics creating a “you are there”-ness which gives them a context for person-to-person socialization, and individual exploration in a simulated “outdoors” environment. This is great in itself, and it also suggests something that SL has searched fruitlessly for, in the ten years it’s existed: A killer application that’s unique and important and in many ways indispensable.

Second Life could have been (or might still be) a killer app in other categories, but so far, that hasn’t obtained. Consider:

  • Second Life is pretty good at making machinima, but has poor frame rate and lip sync options, compared to a platform like, say, Source Filmmaker.
  • Second Life is pretty good at 3D building and modeling, but not compared to more powerful and more popular platforms like, say, Maya or Google SketchUp.
  • Second Life is pretty good as a social game or roleplaying game, but is much less popular than, say, IMVU on the one hand, and World of Warcraft on the other.
  • Second Life is pretty good as a sandbox building game/toy, but, Minecraft, say, is much more popular and easier to play.

And so on. I’ve long wondered what Second Life’s killer app is supposed to be, but over the years, every time I think one candidate is emerging, a competitor shows up and usually beats it on some level. Except in this one application, of providing a meaningful online place for the real life disabled. Consider:

  • Second Life is immersive and open-ended: While MMOs are also immersive, the traditional game structure constrains the immersion, and limits user options and creativity.
  • Second Life is flexible: The flexibility leads to a wide diversity of content and social experiences, while as a system with an open source viewer, makes it possible to create versions of Second Life intended to work well for people with particular disabilities. (Including versions of Second Life controlled by thought.)
  • Second Life is social: While many disabled people use Second Life, it also has a relatively large, general active userbase of 600,000 or so, making it possible for them to connect with others from many places and backgrounds, giving them a robust online community not defined by disability, but by shared interests beyond it. (This came out in my discussion with Barbi, who mentioned that Fran loves to attend live jazz performances in Second Life.)

I can’t think of an alternative platform which is superior in all these things at the same time. And here’s the true irony: Because Second Life is pretty good as a social game and a content creation tool, it’s great as a platform for the disabled. Perhaps greater by far than anything else on the market.

And maybe this is the best future of Second Life as a commercial product: A platform that doesn’t have to be great for everyone, but good enough for a large enough number — who in turn, can help create an excellent place for the smaller number who consistently benefit from it so much.

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