Monday, July 16, 2018

Interview with Draxtor Depres

Interview with Bernhard Drax- June 21, 2018
By Gentle Heron

Bernhard Drax, known as Draxtor Depres in Second Life and Sansar
Bernhard Drax
Q- Your avatar, Draxtor Despres, and your video work are famous in Second Life, but not all of our blog readers are familiar with SL. And I suspect even those who know Draxtor don’t know much of Bernhard’s physical world background. Please tell us a little about yourself, and what you do lately.

BD- I have a music background. I studied music, guitar and piano. My piano skills are abysmal. I use the piano for composing. I still do film scores. I actually have a French documentary coming out in October. I just did the music.

I also have a background in radio journalism. I was the news director at a small NPR [National Public Radio] member station in California, where I also trained volunteers and students.

I can also clean the dishes really well and, for a man, I have impeccable bathroom cleaning skills…although it is disputed. I also have a sense of humor, which for German people is very rare.

Q- And what about Second Life?

Second Life and virtual worlds have taken over my life to some extent, in a positive way, because it has become such a playground and a creative outlet. Yes I do other things in the physical world but I do a lot that is related or inspired by Second Life.

Second Life to me, when I discovered it, it brought everything together, it kind of combined all my interests, finding out what drives people, people’s unique stories, and wrapping this into some sort of documentary format. What was new to me was the filming aspect of it. I worked on films as a sound guy, but I never really made whole movies. I learned a lot. I learned video editing.

But also I got a lot better at talking to people so that they feel comfortable so that I can I can use it for my documentaries.

Q- Your most recent video work is a short promo for the Second Life 15th Birthday. Why do you concentrate so much on Second Life? 

BD- Interestingly enough, I just got a Twitter message from a guy who said, “Oh, you love Sansar so much. You seem to have an aversion to stepping into that old Second Life place.” The truth lies in the eye of the beholder, I suppose.

I feel very, very… I think it’s loyalty. But loyalty can mean sometimes you’re still sticking with something although you’d like to move on. I don’t see the need to move on from Second Life. Second Life is extremely rich in stories and I am a story teller. I find the vibrancy of Second Life is so rewarding. Even with all these other worlds that are coming along, and we’re doing a lot of stuff in Sansar, but it hasn’t grown to that extent yet that there are so many rich stories. It’ll get there. Sansar is a new continent.

So right now I am basically shuttling back and forth between the old continent and the new continent. I’m sure there’s people in my physical world who probably say behind my back, “Oh my God, Bernard, you’ve not moved on from that virtual world.” And I think that’s a rather sad statement.

That only comes up because we’re talking about an old technology. Tom Boellstorff is fairly eloquent about that. He says, “Nobody would say that about a city, or a culture, or even music, just because it’s been around, it makes it invalid.” In terms of technological platforms, we have become accustomed to say, “Oh, that’s yesterday’s news.” And we’re sort of conditioned by the tech industry to think that way. And that’s rather sad. Yes, Second Life is a technology platform, but it is inhabited by real people. The stories of real people are never yesterday’s news.

This is the gray area. When people go, “Are you still in Second Life?” I feel very sorry for that guy. It’s like, you meet someone at the high school reunion and they’re still doing something, like collecting pencils or catching butterflies or some weird hobby. That’s pretty insulting.

It says something about them, that they have been so conditioned to… To me this is actually a narrative in the type of capitalism that we have subscribed to where everything has to be upgraded constantly. Your old car is not good enough; you need a new car. The car drives fine, but no, you need this other thing, so it’s a rat race of features and of course as you know what is always being touted as the reason why Second Life in particular is not valid any more because it’s being outdated in graphics and performance and stuff like that. I guess if I’m a good friend I could say, “I can really see the years on you, but you still have your charm.” You could say that about SL too, maybe. But still I find it extremely offensive that the mainstream press in particular feels it needs to point out when something is written about Second Life that it is somehow outdated but it is still sort of lingering around.

It’s not. I hate to break it to you but I think that globally we have bought into this thing that new is better. You could just as easily knock down a house and build something new on top of it.

Q- Before that video, you made a documentary about a research project involving people with disabilities titled “Our Digital Selves.” Over the years I’ve known you, you’ve done several videos about research on the Second Life disability community. 
Our Digital Selves: 
Creations for Parkinsons:  
Virtual Health Adventures:  
AVESS Phase One: (Visit website here)

BD- I don’t remember how that all started. I need to point out that my mother was a special ed teacher. I always thought it would be normal for everyone, that it’s not a big deal to be around people with disabilities, because I grew up around people with disabilities. When I was in kindergarten, my mom still had to teach. I was already out [of school for the day] and she was right next door with the special school. That’s where I went. I had to sit quietly for two hours. There were kids in wheelchairs, kids with Down Syndrome, just a whole bunch of different kids of various abilities. To me this was very normal. Later, when I grew up, I realized that so-called “normal people,” or able-bodied people don’t know how to act around people with disabilities.

When I entered Second Life, these stories kind of came to me. Now I realize I’m very happy that I found a place where people trust me to tell their stories. That’s all I can say.

Shyla [speaking in the “Our Digital Selves” video] is convinced that it is about 70% in Second Life are people with disabilities, and that makes total sense to me. I wish this would be more discussed. In Shyla’s thing, she puts this forward and I hope the movie maybe will bring it to the attention of Linden Lab because it’s a major constituency. I know that they really care, but maybe there is something, a specific policy that they could do more, also with Sansar and going forward with other platforms,

If I think back, the stories of Login2Life, which is Daniel Moshel’s film, I had nothing to do with this film other than it was brought to me…I don’t know how Daniel came to me, but he wanted someone to act in this film, and then he found other people like yourself, or he hadn’t yet found you.

Q- Why do you think people with disabilities come into Second Life? How do you know if a person you meet in Second Life has a disability?

BD- So this was not something that I sought out. It really kind of came to me, and I think I realized that through conversations. Because as you know, people get the opportunity to disclose at their own pace. So when you start talking with someone, they don’t throw it at you right away what their life circumstance is. But when they gain the trust, then they will and so I think over time I realized that this is a strong force here in Second Life that is very creative and.. I’m just thinking to myself if I had an inkling or if I had an intuition about them, but I don’t think I did.. because at the very beginning I was like oh my god look at all these people and I was more like ahhhhh the scientists oh my god the researchers oh my god these people play democracy role play.

And you’re not forced to disclose it. In my earlier stories there may have been a whole bunch of people who may or may not have been disabled but in the context of when I did a story about Neufreistadt sort of democracy role play, at the time the fact that people were disabled was very secondary and that is very good for this particular story. I think this is a big strength obviously, that it’s not relevant. Sometimes it’s very relevant, when we talk about policy and inclusion, but sometimes it’s not relevant. It’s about the fun people have when they do Harry Potter role play or … I’m trying to find examples from my own body of work, but it’s so extensive. I need a librarian 24/7.
Playing Democracy In A Virtual World:       

Q- Have you had any negative responses to your “Our Digital Selves” documentary?

BD- The response to this documentary has been very good. But what is surprising to me and a little bit frustrating, I have a few folks that I happened upon that I am following on Twitter and interacting with in the disability community, there is a guy named Dominick Evans who is also a gamer and he is making a disability documentary… they were not responsive, they were not interested when I told them about it. And again this is complete speculation, especially with Dominick Evans, I think it had to do again with Second Life.

What was baffling to me is here’s someone who understand the field of interacting as an avatar, living through an avatar, I think he has cerebral palsy, and he’s smart and he does outreach and he does all that and he says “Oh yeah, I’m going to look at that” and then he just kind of faded away and I chalked it up to the thing that like OK people are just not understanding Second Life especially when they have this sort of gaming background. They wouldn’t understand why someone would be in a world where there are no monsters to kill, to put it bluntly. They find it super boring and “what’s the point?”

I can relate to it. If you are looking for a specific type of fun and entertainment and Second Life does not provide that, it looks like a duck but it’s not a duck.

It’s so frustrating because we have this movie and we have all these different people who come from different walks of life and the tension between somebody like Shyla who acquired her disability later in life and then Daisy who was born disabled … there’s a big tension. It’s not so much in the movie but the tension’s happening right now actually. Daisy is very outspoken. I really respect her but she sees things extremely differently

Q- You’ve discovered one of the divisions within the disability community.

BD- I always think of my grandmothers. They were both in the same old folks’ home, and they didn’t like each other. One was on the first floor and the other was on the second floor. I visited my father’s mother on the first floor. She had diabetes and lost her legs. And then I went to the second floor and my mother’s mother, she was traumatized because my mother died very young. They both had a hard time. But they were constantly fighting about who had it worse. That was in a way kind of hilarious to me. I went to the second floor and she said, “How is she doing down there?” I said, “Well she’s doing fine.” “She should be because she’s got nothing to complain about!” (laughing) That kind of thing.

Q- What would you tell researchers or others who might be interested in working with people in the disability community to convince them that virtual worlds like Second Life are valid research venues?

BD- Because it’s a sample that is incredibly large and it’s incredibly diverse and they will never, even with the biggest resources, be able to get this diversity of opinion to any subject matter concerning disability ever anywhere. They won’t get it even on the web or other places. If they put the word out on a web forum they might get a whole bunch of people. But obviously what’s the difference here? I would still say you will get a larger group of people and a more diverse group of people in Second Life, but also, I don’t have to tell you, you get them in their natural habitat. It’s not only where they come from but where they themselves have created, so as a researcher observing this and, I guess it depends on what discipline of social science you’re in and which tools you are using, but I would say it’s way more precise because you’re getting as close to the physical world as you can. If you go into Second Life you pretty much literally sit down with someone in their house on their porch by their little pond that they have in their back yard looking at the ducks and you have the conversation where you then draw your research from and you come to your conclusions.
Draxtor Depres (aka Bernhard Drax) shown in his recording studio in the virtual world of Sansar
Drax (at far right) in his studio in the virtual world of Sansar

That’s a surrounding, that’s a place that changes the outcome of your study that’s not replicable unless you’ve got millions of dollars to fly all over the world to get those people to participate. You get a geographic diversity without leaving your home, because you can go in there, you are getting a huge diversity from all over the world for your study. But you can get that on the web too, you post on a web forum or if you are in a university you have your grad students put the word out on their forums to get people to participate. What I’m talking about is that you then conduct this research in the world, in the place, like you are going to visit them on their own turf, in their own space, the space that represents them.

I’m talking about a specific methodology, also. For some methodologies, depending on the study, it is not necessary to go into their homes, sit down for a cup of coffee, it might be frowned upon, but you could do it over the phone or whatever. I find that the most fascinating method. If I had interviewed Daisy over the phone, and I didn’t know how she lives in SL, what’s the point?

For my purpose, I can see that for the purpose of disability researchers, they may have different goals, they may have goals where they do a study on how do you deal with the fact that the post office where you live in the physical world is a historic building and they can’t put a ramp in. If the researcher does sort of a survey or was studying the state of affairs of retrofitting houses or buildings in the United States or whatever state. yeah I could argue why would they have to be in a iSkye’s wonderful home with the pond and the ducks. They could do it over the phone. But I still think it’d change the answer, it will change everything because … placemaking!

Q- And the sample of people with disabilities in Second Life includes many with very severe disabilities. We have community members who type with their feet, or people who are completely paralyzed who control their computers with their eyes.

BD- I don’t know how they access the computer if they’re that disabled. I know there’s blind people in SL and that sort of thing. That’s kind of my point, the ease of access to them. If the researcher had unlimited amounts of money, they could go where they [severely disabled subjects] are.

Q- You seem to be a disability researcher yourself, Drax.

BD- Am I? I’ve been called the Michael Moore of SL machinima. I’ve been called the Goebbels of Linden Lab propaganda. (laughing) I’ve been called the Leni Riefenstahl of Second Life machinima, come to think of it.

I’m an advocacy documentarian. I thought long and hard about the term. I’ve been called an ethnographer and an anthropologist, but I don’t use the methodologies I would have to use to qualify as a real social scientist. I pick and choose and I do have an agenda. My agenda is to highlight stories of marginalized people who are not often heard. That’s a very deliberate thing. For that reason, that’s why I came into Second Life. As you know, a lot of people come into it and when they realize, well I can do anything, then a lot of people do very different things. I used to know a guy who was a marine biologist as a day job, and he started making furniture because he always wanted to do 3D modeling and he never did that, so he did it in SL.

When I came in, I realized very soon that I wanted to tell stories that are being ignored by the mainstream media. That’s why I call myself an advocacy journalist I guess. Documentarian may be better.

I have a point of view. And Linden Lab can use that point of view because it suits them, but that’s not my primary motivation, to make something that suits them. There is an overlap because I pick stories that are positive. They can use it to highlight the qualities of their platform, but for me there’s a fundamental difference between a commercial and something that picks out these stories. I’m not an investigative journalist. I have my beef with Linden Lab on many fronts and I’m not pursuing that. I could, but I have limited time and I choose to highlight the stories that are ignored.

Well, the Second Life Birthday video was a paid gig. That’s a highlight reel for Second Life, for promotional purposes. They asked me to do something, I put a concept in there. I worked on the voice over with Ebbe so that it would sound natural, but they wanted to have bullet points in there. That’s why it’s on their YouTube channel and not on mine.

What’s really important is the promotional aspect of it, and that’s why I go out of my way disclosing it, because I do get that every once in a while kind of a nasty comment like, “Oh yeah, he’s not even talking about XYZ, and it’s unfair.” My response would be, “Yeah it’s totally unfair but I’m not the court reporter and I’m not the investigative division of Second Life viewers.” I have a very specific thing that I do. I have an opinion and that opinion is often times very critical of Linden Lab if you ask me privately or even if you ask me publicly. For example, take Brad Pitt. Brad Pitt is an activist on many fronts in the physical world, but he’s playing in movies that are sheer entertainment. You’re not telling him, “Why are you not talking about the Enron scandal or that kids are being thrown in concentration camps?” He does that, but he’s not doing it in his art form.

Long winded thing and people will say, “Drax, you are being totally defensive.” No, I’m not!

Q- I’m going to give you the chance to ask yourself the final question. What do you want people to know?

BD- (laughing) “How do you get the time?” That’s a question that I sometimes ask. And I get the same answer that I will give you now.

Q- I thought your wife asked that question.

BD- (laughing) I don’t watch television. She knows. It’s kind of a job, so I can legitimately say I have to do certain things. But if I look at it as a mere hobby or just sort of volunteering, where do I get the time? The time I get from not watching television. It’s very simple. If I look at the statistics of what people consume in terms of television, and I’m not saying that television is bad. There’s amazing stuff happening especially in documentaries and I should probably watch more of those to get inspired and see what the other people are doing.

For me this is something I actually need as balance. I read paper books, which is fairly well known. I don’t read books on a Kindle. I really don’t like it. I want to commit to one book at a time. And that’s a perfect balance. It’s the perfect sort of single-tasking balance that keeps you centered, I think.

Q- Thank you Drax for your advocacy, and for finding the time to do this interview. 

Wednesday, July 4, 2018

Interview: Shyla the Super Gecko on Disability and Advocacy

Interview with Shyla the Super Gecko- June 22, 2018
by Gentle Heron

Shyla the Super Gecko's Second Life profile picture
Shyla the Super Gecko
Shyla is also known in Second Life as KriJon Resident. Shyla used Dragon NaturallySpeaking to translate her spoken words into text for this interview.

Q- Good morning, Shyla. A lot of people know Shyla in Second Life, but not all our readers know SL. And I bet not all who know you in SL know the pre-gecko Shyla. Are you willing to share a little about physical world (RL) Shyla, pre-disability, for background?

SSG- Sure. Because I wasn't always disabled. And my story relates a lot to the idea that a person can be disabled in a very short period of time.

I was very athletic as a young person. I enjoyed soccer very much. And I did have some troubles with my knee at a young age, when I was just 16. But they were not disabling, I would get surgeries every now and then, but eventually they told me I should avoid the harsher sports. So I became an avid bike rider. I enjoyed cross-country cycling most.

In 2001, and I remember this because it was the year of 9/11, I finally sought treatment for a herniated disc. They did not think I would recover from that. But I did. I did not take that as a warning of what life might be like disabled, I took that as a statement that anything can be recovered from.

Then when I was in my mid-40s, it herniated again. I was in excruciating pain, screaming pain. They repaired it but it herniated again within another year, and also it did not remove all the pain. The re-herniation took me from an active life to only being able to lie in bed in five days. They fixed it but because the pain didn't go away it was impossible to sit at a desk all day and work. Then it re-herniated, then another surgery, and then I went crazy.

My whole life disappeared, my ability to work, sleep, be active were all gone. I worried about financial stability. I worried about being able to keep my home. I worried about my sanity. And I think I worried most about having a purpose in life. That is the before story to the point of disability.

Oh, one more thing, I spent and spent and spent looking for a fix. Anyone who said they could fix me got my attention.

Q- How has your disability changed your life and your outlook on life?

SSG- Well, with time, and I think with faith, and when I say faith I don't mean a religious faith but just a belief in just about anything, I settled down. There are very few resources for me in the state where I live. I now have an aide who comes twice a week, a woman who cleans the house a couple of times a month, and a lady to take care of my cats twice a day.

On the more spiritual side. I began to realize we all need each other, that it's okay to ask for help, that it's okay to be vulnerable with people you can trust. I attend support groups, where I often find people I can trust to talk to, but mostly I have more peace and serenity now. I realize that my job does not define me. It has opened me up to being more creative in other areas. Second Life had a lot to do with that.

Q- That was my next question. How did you find the virtual world, and how has it changed your situation?

SSG- Well I found the virtual world first through a support group. And I came to it once a week to attend this group. I did that for a year maybe more. I never ventured out of that SIM. I never learned how to do much more than sit in a chair and walk around and type in a chat box.

And then finally, one day, I'm not sure why, I ventured out and found "freebies"! I got all kinds of freebies, and then I had to figure out what to do with them, I didn't even know how to change my clothes. But that was the start.

I found Healthinfo Island. And there is an area with a lot of support groups. And I looked at all the signs, and looked for groups that I might fit in with, and I sent out IMs [instant messages] to many of the groups. Virtual Ability responded to me. And so I became involved with Virtual Ability. I did presentations after I took a workshop there.

Shyla the Super Gecko stands in front of the exhibit she built at Ethnographia in Second Life
Shyla at her Ethnographia exhibit
Then I found Dreams. And I began to learn to texture, and then I began to learn to build. And even when the Ethnographia project began, I was not confident in my building skills, so I was not sure if I could participate. I remember talking to Tom [Boellstorff] and Tredi [Donna Davis], and they said I could definitely participate. So I built this, what we are standing in front of, and it became more and more complex with time, as I observed other builders in Second Life and began to try to figure out how they were doing what they were doing. Now I have a parcel of my own, that I call Accessibility Park, where I have built many things. (To learn more, visit Our Digital Selves.)

I am active now in Sansar. I have visited other virtual worlds. I feel the opportunities are unlimited. I tried scripting, but I've given it up, because my brain has a difficult time concentrating now. I'm still disabled, but sometimes Second Life makes me feel much more enabled than disabled.

Q- You hold strong beliefs and are not shy of advocating for them. You've done this in the past in the physical world (RL). Would you please say a bit about advocacy and the skills you use?

SSG- Well, as you know I'm a lesbian. And when I was young I advocated for gay rights. I worked to educate and get programs for people with AIDS. I lost many friends to the AIDS crisis, and these two aspects of my life, along with just being a woman, have taught me that it's important to speak out.

But many people are scared. I advocate sharing our story for people with disability. There is a lot of misinformation propagated not just by stereotypes but even by government entities, politicians, that we are lazy, that we are able to work in our society that is driven by an 8 to 5 clock. So I suggest people just tell their story. It's less frightening and it need not be political. If people heard our stories, I think that there would be greater understanding. I know that is true for the people around me. And yes there will always be naysayers, there will always be people in our lives who think we are "faking" whatever our disability is. But our focus should be on those who are willing to listen.

I think too, to one of the earlier questions you asked, I have learned there is no point in blaming. When we write our stories, we do best to just leave it at our stories, just the facts, take out any of the blame, but if something happened to us we should share it and let the reader or the listener determine the need for change. I think it's difficult, in our situation, to write this way because there is clearly plenty of blame to go around (laughs).

Q- Dispassionate discourse?

SSG- Yes, but with the passion of our story. We know our story better than anyone, Gentle. And we don't need to highlight the injustices or the additional pain that they've caused, because there are so many it won't be lost on the reader or the listener. That has been my experience. We don't need to yell, we just need to tell.

Q- So an important skill for advocacy is to be able to separate out the emotion during communication, but to keep it for our motivation? Oh I like how you said it, "tell don't yell.” OK so good communication skills. Anything else you can think of that helps one to do good advocacy?

SSG- Well, it helps to be informed, to find organizations that communicate well, communicate the facts, and use them as educational resources. This is very difficult in our community. As organizations grow, they can be compromised, and focus on their sustainability rather than the community they are designed to serve. I think this is a harder skill to teach, separating the good organizations from the ones who have gotten lost along the way, than how to communicate our story.

It takes me a lot of time to understand board composition, and the facts around a disability to know whether an organization is really serving the community they were designed to serve. And of course, those organizations with the most funds can do the most marketing, and use that marketing to sway our opinions about them and what they are doing.

So in the end each person must decide where to put their focus, but I think it's important to share with people that not all organizations that say they are helping are really helping as much as they could. It's hard to decide where to put your volunteer energy and any extra funds we might have; both are so scarce in our community.

Q- Can you do advocacy inside virtual worlds? If so, how is it similar and different from RL advocacy?

SSG- Yes, you can do advocacy inside virtual worlds. You can mimic real-world advocacy, that's how it's similar. But how it's different is in the relationships we have with those around us. Second Life, and other virtual worlds, are not games in the sense that they actually can be used to change the real world.

You know, I believe that over 70% of the people in Second Life are significantly disabled in some way. I am saddened to say I must use the word "significantly" because people have minimized my statement by suggesting everyone has a disability of some sort. And there are many people in Second Life, and if we all began to talk and share our story with others, I think we would see a real difference. That is what this film, Our Digital Selvesis about. [Click the link for info about the film from the website, or click the video below to watch the film.]

We are sharing our stories, everyone in the film shares their story, and our stories have similarities and they have differences. We are not "things” that you can just lump together, we are all unique. That is why every story is important to share. I share my story here in my build through my poetry, I share it at open mics and when I perform in Second Life. I share my story every opportunity I get, and I hope it does not wear people out as much is it invigorates them and helps them realize how amazing we all really are. Not because we get up every day and breathe, but because of how much more we do. That we can express our stories in our creations in Second Life, and in other virtual worlds, makes virtual world advocacy very unique, very inspiring, and very amazing.

Q- You are good at predicting my next question, Shyla. You've been a poet and performer in RL and now in SL. How is that the same and different?

SSG- It's the same, in the sense that I want to give my everything to my audience. There are open mics where I can practice my work, and it is imperative that I continue to write on a regular basis. These things are all similar. I have less stage fright in Second Life. I used to hate to take the stage in real life, oh my gosh I'd be so scared my stomach would turn inside out. Then once I was on the stage, I would be fine, but getting onto it was a nightmare for me. I feel fine here in Second Life taking the stage, even in front of people I do not know. I still have some jitters, I think that's natural when you want to do a good show and you're trying to do something unique and different. But nothing like in real life.

Q- That's an interesting difference. Any theory why?

SSG- (Giggles) I am not really sure why that's true. But I'm glad it is.

Q- Indeed! You've been part of research projects here in Second Life. What advice would you give potential virtual world researchers about how to plan and design research projects in here?

SSG- Wow. I've not really thought about that question. Ethnographia was such a unique experience because we were given a blank slate. Everything here was built by the research participants. And both Tom and Tredi were very familiar with Second Life and how it works. I think that is important. I think too, they listened. I am not sure what presumptions they came in with, because it's hard to not do a research project without some presumptions. But they listened.

I think too, make sure everything works from the get-go, meaning take the time to do builds and bring people in to test them. And of course follow the guidelines. Make sure participants know they can exit at any time, make sure they understand what is happening in the research project, what they're being asked to do, and make sure there is proper confidentiality as is appropriate. Not everybody here at Ethnographia participated in the film, that was our choice.

Q- Right, informed consent is critical to research in any venue. 

SSG- Yes. And research subjects should understand this too.

Q- But Shyla... you are a GECKO! How can a gecko give informed consent?

SSG- (Laughing hard) There is a human behind every avatar that can give consent, but I do enjoy being a gecko. In the film they asked why a 40-year-old something would want to be a gecko. I found that an interesting way to phrase it. Who wouldn't want to be a gecko?

Q- Ummm ME! (laughing) Last question- What have I not asked about that you would like the world (or at least our blog readership) to know about Shyla, her disability, her life, or her Second Life? You get to set the question.

SSG- Hmmmm... It's not about me really. It's about us. We're in this together. The whole world is in this together. And if there's one thing disability has taught me, it is that it doesn't work unless we’re in this together. I was listening to the National Geographic magazine and a Professor would give his students an option. They can get six points of extra credit, or two points of extra credit, but if more than 10% of the students chose six points of extra credit, no one would get any extra credit. None of his classes earned the extra credit. This is a concern to me. We are really in this together.

Q- Wow, interesting research! The Tragedy of the Commons in the gradebook. So that’s all my questions. Thank you Shyla.

SSG- Thank you Gentle.

Friday, June 22, 2018

Interview: Ruby Vandyke and Boston Medical Center Research

Interview with Ruby Vandyke, June 14, 2018

Ruby VanDyke as her Second Life avatar
Ruby Vandyke as her Second Life avatar
Q- Ruby, what would you like people to know about you, physical world (RL) and/or Second Life (SL), either or both?

Ruby Vandyke- I've been at SL 11 years and have enjoyed every minute of it. I've had so many good experiences at SL and made friends with some great people. In RL I live in Canada and am pretty isolated, so I rely on SL for friends and socializing.

Q- You are the head of the Ambassador Team that is working with a research project in Second Life sponsored by Boston Medical Center. Can you say a little bit about what that research is trying to do?

RV- The research project is working to educate women with Diabetes about managing their Diabetes. They meet in SL weekly for 8 weeks. They receive information about Diabetes and share their experiences with each other.

Q- Before you could work with these women on this research project, you had to do some preparation. Please tell us about that.

RV- I had to take a CITI course to learn about research ethics and confidentiality when working on a research project. The CITI course taught all about research, records, ethics, working with children, populations of vulnerable people and other topics. I also had to pass a test on the course. Now I am certified to work on this and other research projects.

Boston Medical Center building in Second Life
Boston Medical Center project in Second Life
Q- What do you mean, confidentiality?

RV- Women participating in this research project share personal details about their health and their lives. They need assurance that I will keep anything they say confidential. I won't repeat it to others.

Q- Right. So that part of the course was about how we treat the participants. You also learned about the ethics of how research projects are supposed to be designed.

RV- Yes, to make sure all participants are informed and have given proper consent.

Q- You actually work with 3 three different groups here: the other VAI staff on this project, the research staff from BMC, and the participants. What do you do with the other staff?

RV- I have worked with several other VAI staff on this project. They also have completed the CITI course as well as Ambassador training so they can help new residents.

I keep in contact with the VAI staff to let them know what will be happening during our session each week. I provide them with any information they might need, such as a list of BMC staff members. During the session, I assign them to various tasks, such as helping some of the participants with exercise equipment. I remind the VAI staff of our role in the overall project, which is to help the women participants learn how SL works. How the viewer works, what SL is about and encourage them to explore SL on their own in hopes they will decide to remain at SL once their sessions are over. The VAI staff are a tremendous help with this project.

Q- The BMC staff have several other roles. What types of things do they do?

RV- The BMC staff lead the educational part of the sessions. They hold discussions with the participants and do slide show presentations. Some of the BMC staff are also technical support, so they help the participants with computer problems.

Q- And your VAI staff help the BMC staff sometimes. What advice can you give other researchers about preparing their staff to work on a project in SL?

RV- Researchers need to make sure that their staff are fully acquainted with SL before they bring in the participants. Their staff also needs to keep in constant contact with the VAI staff so we know what areas they need help with.

Honestly, I think their staff needs to be near the same age group as the participants too {laughing}

Q- You've also helped the staff reshape the curriculum based on how things go with each cohort. Can you say a bit about that?

RV-Yes, when this project first started, the staff had envisioned a much wider range of activities for the participants to do at SL. But we quickly realized that it was too overwhelming for them. Just learning how SL works was so time consuming and frustrating, they couldn't cope with trying to do things like go exploring other places at SL.

So over the past year, we have managed to streamline their sessions to make it easier for the participants and now they are enjoying their time at SL more, which is nice to see.

Q- To help with onboarding the participants, BMC creates the participants' accounts for them, and you create their customized avatars. Is this part of that streamlining?

RV- Yes, one of the most difficult things to teach the participants was how to change clothes, especially individual pieces of clothing. We found that it was taking too much time and the women were becoming too upset over not being able to get their clothing to look right or ending up with no clothing on at all.

So we decided to try making complete avatars for them with the change of clothing. Now all they have to do is click on the clothing folder they want to wear and replace their current outfit. It has proven to be very successful and the women are excited to be able to change clothes quickly.

When they register for the program, BMC staff create an avatar account for them. Then I log in as each avatar and transfer all the clothing folders they will need for the course. This way their inventory is complete and ready to go from the first session.

Q- Ruby, you built the research site on Independence island for BMC. There's a lot for participants to do there. But each week, instead of going on a field trip as was in the initial plans, the women get to do a special activity that you set up. Please tell about a few of those.

RV- The BMC staff has asked that instead of taking the women on field trips, we bring the activities to them at the WIC Center. They let me know what activity they want to do each week and I set it up for them. One week they will swim, so I put up a big swimming pool with animated float rings and we provide swimsuits for them too.

Another week they ride bicycles around the sim, so I provide the bikes and a cute exercise outfit for them to wear. Towards the end of the sessions, they have a fashion show. I set up a catwalk and provide them with evening gowns. That's always a big hit with the women!

Q- The women participants are all coming into SL from their homes. This leads to the inevitable problems.

RV- Yes, the participants are provided a laptop to use by BMC for this project. They are each in their own home when attending their sessions at SL.

One big problem is that most are not familiar with using a headset or talking over voice. So they forget to turn off their microphones when they are not speaking. Many of them have small children or are babysitting children, who can be quite noisy in the background. They also frequently have TV's on loudly. So we are constantly having to remind them to turn off their microphones. Of course, that leads to another problem of them forgetting to turn their mics back on when they do want to speak. But after a few weeks, most do get the hang of it.

Q- I want to know what preparation you think the women participants should have before they are expected to be part of the first SL session

RV- The participants need to receive several trainings in how SL works, what buttons they need to know on the viewer, how to walk, sit and stand. Most of them have no prior computer experience, so that makes it even more difficult to learn how to do things in SL.

If the participants have training before their sessions begin, then we don't have to cut into their educational time with trying to talk them through how to sit.

Boston Medical Center's drive-in theater in Second Life where lessons are shown on screen
Watching a lesson at the movies
Q- You've been a builder in SL for a long time, so I know one thing you enjoy is creating these venues and materials.

RV- Yes, it is fun and I like the challenge too. I'm always happy to be able to provide the items the BMC staff need for this project.

I also have to be able to make on-the-spot changes to the build. For example, the women were having difficulty getting the front door to open, so I had to quickly remove the door. Or they would get stuck in a fence or wall, so I would temporarily make it phantom so they could walk through it.

Q- I hope it's not giving away your personal health information to say that you don't have diabetes. I'm interested what you've learned about managing diabetes from your work with this project.

RV- No, I don't have diabetes. Actually, I have the opposite - low blood sugar. But my husband does have diabetes, so all the information I've learned from this project, I can put to good use.

Q- What is your favorite memory of this project?

RV- Seeing how much fun the women have when they do the fashion show. They are so amazed when they see themselves wearing an evening gown. They giggle like school girls going to the prom. When they walk down the runway to model their dress, they are laughing with each other. They really get a kick out of it.

Q- Anything else you'd like to say about being able to assist with research in SL?

RV- I always enjoy assisting with research projects in SL. It's nice to be able to help others and it's also a learning experience for me.

Q- Would you encourage other researchers to use SL as the site for their research?

RV- Oh yes! SL is a great place to do research. Participants are more apt to feel like they can speak freely when they are not having to face someone in real life. There are so many activities that you can do in SL that would be impossible for every participant to do in real life. It makes learning more fun for people.

Thursday, June 7, 2018

Cleaning Different Types of Floors

An Independent Living Skills Post

The most useful tools for cleaning most types of floors are a vacuum, broom and mop (either wet or dry). You might also want to consider using a scrub brush or rags with a bucket.

For Carpeted Floors and Rugs
Vacuuming removes inevitable dirt best from these fabric surfaces. For stains, use a commercial carpet and upholstery cleaning product.

For Wood Floors
Living room with wood floor chairs and cabinet

Proper cleaning of wood floors depends on their surface treatment. Are they surface-sealed? Or are they oil- or penetrating-sealed? To tell, rub your finger across the floor and look for a smudge. No smudge means the floors are surface-sealed. If there is one, the floors are oil-or penetrating sealed.
Surface-sealed: Use mild dish soap, white vinegar or ammonia diluted with warm water. Or try glass cleaner. Do NOT use hot water.
Oil- or penetrating-sealed: Use a broom or dry mop to remove large debris, then vacuum. NEVER use floor products with acrylic or water-based waxes.

For Linoleum and Laminate Floors
To preserve the surface of these floors, DO NOT use hot water, abrasives, solvent-based products or waxes. Clean linoleum or laminate floors with a dry or damp mop. If you feel you do need a cleaning solution, use a small amount of diluted ammonia or a weak vinegar solution.

For Tile and Stone Floors
NEVER use brush roll vacuums or abrasive cleaning products on tile or stone; it will leave scratches. Follow directions for the particular floor product. For stains, use diluted dish soap or oxygen or chlorine bleach.

Wednesday, June 6, 2018

Keep Drains Clear and Clean

An Independent Living Skills Post

Sink and bathroom drains and the kitchen garbage disposal may become clogged and unable to drain properly. They also sometimes have an unpleasant smell. Here’s how to avoid these problems using only common kitchen ingredients.

Stainless steel kitchen sink with plants in window
Cleaning Your Stainless Steel Sink

In addition to clogged drains, stainless steel sinks show water spots. To remove them, be sure all dishes are out of the sink and any visible food particles or other material is removed from the drain.
  • Baking soda
  • White vinegar
  • Piece of orange or lemon peel
1. Wet a soft sponge. Sprinkle the entire sink surface with baking soda. Rub it in a circular motion to softly clean the surface.
2. Rinse the sink with a drizzle of vinegar. Baking soda and vinegar will fizz, cleaning and disinfecting at the same time.
3. Use the skin (not white) side of a piece of orange or lemon peel to rub around the entire sink. This will help deodorize the sink basin.

Cleaning the Garbage Disposal

For your safety, turn off the fuse or the source of electricity to the garbage disposal unit. You do not want it to accidentally turn on when your fingers or tools are inside!

Use tongs or chopsticks if you can to remove any material visible inside the disposal.
Flush the drain line: 1. Plug the sink.
2. Turn the fuse back on or reconnect the electricity.
3. Fill the sink with about four inches of water.
4. Turn on the disposal as you remove the sink plug. Pulling the water through the drain line should rinse it out.
If it’s still a bit slow draining: 
1. Pour ¼ cup of baking soda into the drain.
2. Pour on 2 Tablespoons of vinegar.
3. Turn on the water.
4. Run the disposal as it fizzes for about a count of ten.
To freshen the smell of the disposal, put a few home-made disposal refresher tablets (recipe below) or some citrus rinds inside, turn on the water, and run the disposal.

Ridding Sink or Bathtub Drains of Clogs
White simple bathtub with towel on basket beside it
Don’t wait until a drain is clogged to clean it out. You can add this strategy to your weekly cleaning routine and avoid clogs entirely.
Weekly drain cleaning:
1. In a small bowl, stir together
  • ¼ cup baking soda
  • ¼ cup salt
  • ¼ cup cream of tartar. 
2. Bring 2 cups of water to a full boil.
3. Meanwhile, wipe around the drain with a paper towel. Clean any yucky stuff out of the drain that you can pull out with your fingers or other tools.
4. Pour half the powdered mixture down the drain. Pour in the boiling water and let it work on the pipes for about an hour. Then rinse with cool water.
5. If the drain is still a bit clogged, repeat.
For a larger clog:
1. Pour 1 cup baking soda down the drain.
2. Pour on 1 cup vinegar to create a fizz.
3. Let it set overnight.
4. In the morning, pour 2 cups boiling water down the drain.
5. Then rinse with cool water.
For the most stubborn clogs:
1. Fill the sink or tub halfway up with warm water.
2. Use the toilet plunger to clear out the clog.
Home-Made Disposal Refresher Tablets Recipe
  • 3/4 cup baking soda
  • 1/2 cup salt
  • 1 lemon
  • 1/2 teaspoon liquid dish soap
1. In a small mixing bowl, stir together the baking soda and salt. You don’t want lumps.
2. Grate the lemon peel onto the dry ingredients.
3. Then add the liquid dish soap.
4. Slice the lemon in half and squeeze the juice into the bowl. Keep stirring the mixture and adding lemon juice until it resembles coarse sand. (This will take about 3 Tbsp of lemon juice.)
5. Cover a cookie sheet with parchment paper, foil, or wax paper.
6. Use a teaspoon measure or other small scoop or spoon to mold the mixture. Tap these rounds out onto the covered cookie sheet.
7. Allow the rounds to dry overnight.
8. Store the dried refresher rounds in a sealed container.

Wednesday, May 30, 2018

Our Digital Selves Film and Interview with iSkye and Slatan

Interview with iSkye Silverweb and Slatan Dryke, May 24, 2018
By Gentle Heron

Slatan Dryke and iSkye Silverweb relaxing under some trees in Second Life
Slatan & iSkye in Second Life.
Click to watch the film Our Digital Selves
iSkye and Slatan, both long-time members of the Virtual Ability community in Second Life, appear as avatars in the documentary “Our Digital Selves.” They were both active participants in Tom Boellstorff and Donna Davis’s “Virtual Worlds, Disability, and New Cultures of the Embodied Self” research project conducted on the Ethnographia Islands.

I interviewed them together as avatars in a virtual world, which is how I know them. The interview was conducted in text chat, and edited for continuity.

Q- In your opinion, what was the value of this research?

SD- It’s been a challenge for everyone who was involved, but so therapeutic for many of us.

iS- Some of us never met before and formed new friendships.

Q- In addition to the research project, the documentary was another way to be “heard.” How did you feel about participating in the documentary? Was it difficult to do?

SD- I was terrified in the beginning during the interview. It’s not easy to explain my feelings in a foreign language, and properly.

iS- You did very well. I was nervous about using voice.

SD- Now everyone loves her voice.

iS- It’s not my first time using voice in Second Life, but this went on film and is being heard literally worldwide. That was what scared me.

Q- So you helped each other be brave?

iS- We did!

SD- Yes.

iS- Though Drax interviewed each of us separately, it made me smile how our comments dovetailed so well. Slatan and I were saying complementary things without even knowing it.

SD- Everyone was so brave to come out in RL too.

iS- They put into words things that a lot of us think and feel.

Q- Yes, I was glad to meet the "RL selves" behind some of my VAI friends’ avatars. Did you learn anything about your fellow Ethnographians from the film that you did not already know? Did they learn more about you?

SD- I would say we have learned much, not knowing their other side of the mirror, so private in same cases. During the meetings everyone was telling in general some aspects of their life, but never so deeply, and everyone has a different view about what their own avatar is and represents.

iS- A lot of it went to trust. How much could we trust Drax with what we were telling him? "What does my avatar mean to me?" The questions he asked were kind of open-ended so we could tell however much or little we were comfortable sharing, but it still went to trusting Drax with the information we did give him.

SD- Yes, and nothing being prepared in advance, it was a free talk. We were free to express ourselves.

iS- I told Drax a lot about my childhood, growing up, my experience with my family, work experiences, etc., and I know he spent hours with each of us. The way he put the film together, edited it, he kept the most significant things we said. He had hours and hours of footage and recordings, and he had to edit that down to an hour and a quarter. He told us there were things he wished he could keep in, but perhaps another time, who knows.

SD- Yes, he cut part of my interview.

Q- But you knew ahead of time that he would. That’s how film making is.

iS- Yes, we did. We’re not complaining about it, just saying we knew that would be necessary. Originally the film was supposed to be much, much shorter. I think it would not have the same impact as it does in its current form.

iSkye Silverweb sitting for a portrait in soft light in Second Life
iSkye Silverweb
Q- Did you consider yourselves disability activists before Ethnographia? You certainly are now, after that film.

iS- I've been active in my local area as a Deaf activist. Here my focus is broader, because there is strength in numbers.

SD- Honestly I don’t feel like an activist, but more than Ethnographia, being part of Virtual Ability [often abbreviated VAI] opened my view on people with disabilities.

Q- Did you learn about other types of disabilities, and did other people learn more about your disability, from the Ethnographia project and the filming?

SD- I did yes, knowing different disabilities and or form of them.

iS- I learned a great deal about each person's experience with their disability through the film, and at times some of us shared that in our meetups. I think when Drax released the teaser with me in it, the Ethnographians became a bit more aware of what things are like for me. They became a lot more sensitive to the need for text in the meetups. In Sansar, they try to remember to include me in text. That all came about because of the film. It helped them to understand what it's like.

SD- But again, being in contact with people from VAI opened my mind.

iS- Yes! For me too, because I came to understand the benefits of virtual worlds for VAIers with different disabilities.

Q- People talk about "the" community of persons with disabilities. Is there one?

iS- If you mean just one community, it's a loosely connected one. There are so many levels of community: global, local, state, national, and different groups online and inworlds. Virtual Ability is one, Ethnographia is another, Dreams is another. And we call them communities, too, not just groups.

Q- Why is that?

iS- The mutual support aspect.

SD- Affinity.

iS- Coming together for a common purpose and with us it would be mutual support and the ability to be around other people who 'get' disability. Shyla made a comment about the 'screen generation,' the attitude that being in virtual worlds is 'addictive.' 'You need to be part of the world, not shut off from it.' Yeah, well...when I am in a room full of people I am still isolated, in the physical world. I can't communicate easily with other people, especially in group settings. Inworld, it is so much easier for me to understand everybody and to do things, to be empowered to do things. Text-enabled is me :)

SD- Because for some, that is the world outside.

iS- What Slatan said, the virtual world IS the outside world for some of us.

Q- You participated in a research project as a participant, even though in the video you are only shown as avatars. Would you feel comfortable being part of additional research studies conducted in a virtual world? 

iS- Depends who is conducting the study and why.
I think what really helped us was that all along the process of the work on the film, Drax, Tom and Tredi shared with us what they were doing, and why. Tom was spot-on in explaining the “shift” I was describing with my experience. This is because of frequent meetups over the course of three years, with the film work during the last year. The researchers took time to get to know and understand us, and to let us come to trust them. I think this is important to any research study; you won’t understand the messages of the individuals without really spending time with them.
I don’t expect other studies to go that long, but I appreciate when researchers take time to get to know and understand the individuals who are participating in the study. I especially love it when they may start out “embedding” in the community, but then become members and friends IN the community after their research projects wrap up. I don’t know if researchers are prevented from doing that after their work is done, but I can tell you, I miss some of the people who came to SL to conduct studies – as graduate students, research professionals, medical researchers – and then left SL, and we don’t have an ongoing connection with them.

slatan Dryke sitting indoors with his cat in evening sunlight
Slatan Dryke
SD- I agree with iSkye. I could feel comfortable being involved in another research, but only if I can protect my identity in physical world. I can express who I am through my Avatar because he talks for me, in every way. Moreover, my many avatars are an extra under which I can state my feelings, my moods and a key to be more included and accepted in the way I am.

Q- Do you feel this type of research yields valid results?

iS- The research that was done in connection with the “Our Digital Selves” project gave some very compelling results. Tom and Tredi put into words in a very clear way the things that we had been trying to say to people for years.

SL and virtual worlds are not “addictive,” “games,” or “time wasters.” For so many of us, they provide a way for us to connect to other people, to overcome the various forms of isolation that we experience, to be able to do meaningful things, and to be able to define US, ourselves, instead of having labels put onto us. I think the film brought that out very well.

If more studies are needed to add to the research and other findings, and to make it more possible and easier for other people with disabilities to enter virtual worlds and connect with others, I think it is a good thing.

Monday, May 28, 2018

Our Digital Selves Film and Interview With Donna Davis

Interview with Donna Davis, May 24, 2018
By Alice Krueger

Donna Davis during filming of Our Digital Selves
Donna Davis, March 2018
Image courtesy of Bernard Drax
Donna Z. Davis (University of Oregon), along with Tom Boellstorff (University of California, Irvine), has been studying how persons with a range of disabilities use the affordances of Second Life to represent themselves as avatars and share their experiences through creative expression. Davis and Boellstorff are the principal investigators of a 3-year, NSF-funded research project titled “Virtual Worlds, Disability, and New Cultures of the Embodied Self.” Many Virtual Ability community members volunteered to be participants in this research study, which is ending soon.

I interviewed Donna about her work and conclusions from this study, and about the project summary documentary by Bernard Drax.

Q- You are a professor in the University of Oregon School of Journalism and Communication. What were the communication aspects of this research project?

DD- I was terrified all along the way, not really knowing how it would land. We had many tough audiences, with perhaps academics being the toughest.

But also the disability community holds many opinions about what is appropriate language. I didn’t want to misrepresent anyone, so it was important in Drax’s film to let people speak for themselves. I think it’s important to remember what Daisy Gator said: “Disabled people are overwhelmingly presented poorly. Most include awful stereotypes like disabled characters who sit around all day thinking about how horrible their disabilities are; whereas in fact, disabled people just don’t think like that.”

We have a vibrant community of capable individuals. They expressed themselves clearly, both on Ethnographia and in the documentary. My heart has been touched by the response to that video.

Q- Are people with disabilities in general not good communicators?

DD- A lot of people, not just people with disabilities, are not good communicators. We all have strengths and weaknesses. I think symbolically, Cody would be thought of as a poor communicator because his tongue does not allow him to speak clearly. But if you slow down and get to know him, he’s an extremely good communicator. He observed that women want you to communicate in complete sentences. He also noted that when he has to use voice in Second Life, people think he is retarded, his word. He’s actually bright, witty and charming.

Q- In other words, it takes two to communicate, the one sending the message and the one receiving it.

DD- Right, it’s good communication when the recipient of Cody’s speech tries to understand. Then you get the treasure at the end of the rainbow.

There can be many reasons for communication disability: being slow putting thoughts into sentences, low vocabulary, lack of sensitivity… It’s often a hidden disability.

Q- Please say more about hidden disabilities and communicating for self-advocacy.

DD- In the video, Jadyn said, “People with mental illness sometimes refer to it as ‘invisible disability’. … When somebody wears a sling on their arm, nobody asks them to lift a heavy object. … You do NOT walk around in real life wearing a sign [indicating your hidden disability], and it might be nice if we could.”

Some people are good at overcoming their disabilities, those with the internal strength to “do it anyway,” but others are beaten down. You have to have confidence to speak up. Some people speak constantly and in some cases as a result, others may tune them out when they become too domineering. Whether in-world or in RL, there’s a phenomenon known as the “Spiral of Silence” -it occurs when people speak up only to be silenced, embarrassed or ignored until they no longer speak up at all. We try to make sure everyone has a voice in our community and are grateful to give them a voice through Drax’s video.

We know that in disadvantaged communities, people often communicate from a place of hurt or anger. Hurt people tend not to speak at all; angry people often yell. And when someone is yelling at you, you tend to put your self-defense walls up. You need to find the sweet spot. Find the right message, the right voice, and the right medium for effective communication. I work with people, though, who also strongly believe that some people never hear a message unless it’s at the highest volume and in a way that affects the intended audience personally. It’s how we end up with protests and revolutions and they’d argue that sometimes it takes that to create change.

Q- Let’s talk a little about the “Our Digital Selves” video.

DD- We had so much fun! I’ve spent the last ten years in Second Life. I’m one of those people Warren Buffett meant when he said how great it was to get paid to do what you love. My son is a gamer, and he used to joke that it wasn’t fair that I got to hang out in “games” to get my PhD.

I’m a social beast. This community taught me more than I would have learned on my own. Fran Serenade is my hero! She is strong, persistent, optimistic, resilient. At 91, to build a vibrant social life in a technology most people half her age don’t understand… .

Every day in this community I discover new things about myself. It is so much fun being with creative, resilient people. They live with things most people don’t have to deal with, but they shine. It gives me gratitude for my abilities, not to take them for granted. Attitude is so powerful.

But resilience isn’t a choice for everyone. Shyla started the video by saying, “That’s another thing about being disabled… People are like, ‘Well, just hold your chin up!’ or ‘Be strong!’” They hear that all the time, but how are you supposed to do it? I am always in awe when someone in the community is down hard and you see that sense of resilience; they find another creative way to move on.

Q- You’re talking about your previous experience doing research with the Parkinson’s community in Second Life, aren’t you?

DD- Right. DB in one of our discussions said that he wondered what it was that allowed some people to do things when others would just curl up on the couch and wait to die. All the people in Creations for Parkinson’s are resilient. For some people, receiving a diagnosis of a disease that is going to take things away from you, they give up, but others remain vibrant. That strength is a magical gift.

Q- But your work with the Parkinson’s community was not your first virtual world research.

DD- My dissertation research was done in Second Life. I have had a divergent academic path. I started as an undergrad pursuing a degree in pharmaceutical chemistry, and ended up graduating in journalism. I started my PhD research on family media literacy, but ended up working in virtual worlds. I was studying how relationships in Second Life evolved as they moved to the physical world. I was interested in the concept of relationships. Then a friend introduced me to Barbie Alchemi, the founder of the Creations for Parkinson’s community, and I changed to looking at community relationships. That was about eight years ago.

Q- You’ve learned some things about communicating as a researcher about disability.

DD- There are so many disparate expectations of how the disability community wants to be communicated. Some people don’t want to be called “deaf” and others don’t like “hearing impaired.” You end up angering people who don’t like the terms you use. You want to get on the same page as the community you are describing, or you will step on a landmine. You want to talk about disability in a way that people can understand and respect. To do that you need an open mind, you have to listen carefully and you can then only do your best to represent the people you’re working with, with compassion and accuracy. “Tell me what you feel and why, so I can tell your story accurately.” We may need to get more unity and a common language so that outsiders can understand the community better.

Q- Is there really “a disability community”?

DD- I am going to waffle on that. Tom and I come from different disciplinary backgrounds. Community as defined in anthropology is very complex! “Do you identify as disabled?” “Do you have a particular disability, based on a diagnosis?” In Ethnographia, the community is defined by its shared space and experiences.  In the Parkinson’s group, it’s about support. In Virtual Ability, the bond is from identification as disabled. There are also the legal terms, which are necessary for determining service provision. There are ways to categorize by experience or identity.

In Ethnographia, we blend them all. Participants identify as disabled, they are in the same place, sharing the same experience, now have developed friendships and support.

There are lots of communities, and tension develops as they grapple with their differences. You can identify within the disability community. Some don’t want that label at all. They compensate; resilient people may (hopefully!) find ways to be open about their disability. “Understand that the disability is me, but it’s not all of me.” They taught me and Tom this, and Draxtor captured it. “My avatar is me, but don’t define me as those labels. Get to know me.” Take time to get to know the whole person. Tom has a great quote about this in Coming of Age in Second Life that he refers to in the video: “In the physical world, you get to know people from the outside in, but in Second Life, it’s from the inside out.”

In Second Life, you are not defined by labels. You create your labels visually and through your behavior. The environment here slows things down. You get to know people by conversation and the way you are treated.

Melyna in the documentary said she has a male avatar to use for blogging about male fashions. This shows how identity is tied to the avatar. In virtual worlds, you can choose an identity that fits your role. I guess in a way that unfortunately can also reinforce labels.

Q- One of your job responsibilities is directing the Strategic Communication Master’s Program. What do you mean by “strategic communication”?

DD- It’s an interesting time in the traditional journalism community. Journalists now are low on the totem pole of trust. Strategic communication means storytelling, except not the kind that is traditional journalism. For example, branding a nonprofit through many communication channels. It’s about how we get a message out. What is the message, who delivers it, who will receive it, what platform is used?

Tom and I are different here too. He doesn’t define virtual worlds as social media. I do. It’s a mediated platform. If you lose power, the medium goes down. I define virtual worlds as a social medium. Social media today may be text based or visually based, but it’s always about social connection between humans.

To me, Second Life is like a parallel universe in which you use the same tools to communicate like instant messaging and “emailing”. However, the platform of Second Life as a social medium allows both place and embodiment, therefore offering a rich context for storytelling and community building through embodied interactivity. The pillars of community building are embodiment, place and communication. I call virtual worlds social media on steroids, and embodiment is the steroid.

Donna Davis as her Second Life avatar Tredi Felisimo
Donna Davis, as her avatar in the film Our Digital Selves.
View the film here.
Q- You are also interested in entrepreneurship.

DD- The light bulb aha moment for me came from Shyla creating the CENT [Capable Entrepreneurs Nurturing Talent] group. It’s about the spirit of entrepreneurship, creating opportunities for what can be done in a virtual world that can’t be done in the physical world.

Sometimes what is started in the virtual world grows into the physical world. Or the other way around. Solas from the Parkinson’s group brought her skills as a fashion designer into Second Life. Like communication, entrepreneurship has to be two ways.

Q- What do you think is the purpose of virtual worlds?

DD- Everyone uses them in deeply personal ways. Some look for community, others for privacy. Some come to the world to create, others to relax. It’s a life experience, whether virtual or physical.

Your avatar is your brand. Human and avatar experience are one and the same. I don’t believe you can pull them apart.

Friday, May 25, 2018

Our Digital Selves Film and Interview With Tom Boellstorff

May 23, 2018
By Alice Krueger

Tom Boellstorff (University of California, Irvine) and Donna Z. Davis (University of Oregon) are the principal investigators of a 3-year, National Science Foundation-funded research project titled “Virtual Worlds, Disability, and New Cultures of the Embodied Self.” Both digital ethnographers, they studied the various ways disabled persons experience embodiment and place in virtual worlds. Many Virtual Ability community members were participants in this research study.

Tom Boellstorff in film Our Digital Selves in Second Life
Tom Boellstorff, in the film Our Digital Selves.
Watch it here.
As the project draws to a close, I had an opportunity to interview Tom.

Q- The National Science Foundation is not known for its interest in social virtual worlds. How did you manage to convince them to fund this project in Second Life?

TB- People tend to think of the National Science Foundation as one entity, but it operates as separate directorates. This project is funded through Cultural Anthropology, not through the directorates that typically deal with computers and virtual reality. Cultural anthropologists are interested in how people socialize, in whatever venue, be it face to face or on the internet. In terms of the project seeming feasible, it may have helped that I was already a known entity because of my publications in the area of anthropology of virtual worlds.

Q- Did you have to convince them that avatars are people?

TB- Not too much, because we framed it more broadly in terms of social interaction online. People are online in various venues and the funders were interested in how people interact using the internet. If a person is using a virtual world to interact, they do so through an avatar.

Q- Did you face the argument that you can’t consent an avatar?

TB- It was not an issue for the IRB (Institutional Review Board) at my University. It’s becoming better understood that you can do online consent. Many researchers do that now. But there are still some IRBs that don’t understand virtual worlds. It becomes the responsibility of the researchers to educate their IRB members.

Q- You have a personal interest in the area of disability studies.

TB- Yes, in all research there’s always some element of personal motivation. In my original work in Second Life, I was comfortable with the computer technology and I was interested in the method, how to study culture in this medium.

My primary motivation for this project was that early on in my time in Second Life I ran into many people with disabilities who were doing interesting things, including The Sojourner and Virtual Ability. I wrote just three pages in my book Coming of Age in Second Life focusing on the topic of disability, and I always wanted to do a follow-up study where I could delve more deeply into disability experience in Second Life.

Tom Boellstorff as his avatar in Sansar
Tom as his Sansar avatar in the film Our Digital Selves.
See the film here.
Q- Please say a little about how this project started.

TB- Donna and I have been working together for about seven years. After the first couple of years we decided to work on getting funding for a collaborative project. It took us about a year to do the writing and application, and then this was a 3-year project.

Q- How did you decide who to include as study subjects?

TB- We had to define “disability,” and we kept that definition loose. We did not want to focus on a single disability. We were inspired by groups like Virtual Ability that work with people with a range of disabilities. We had to deal with multiple existing definitions, including some people who had a “medical condition” or “illness” or were “recovering from” a condition. We cast a wide net.

Q- But not all disabilities have the same needs. How did you handle that?

TB- Devva Kasnitz talks about “cross-impairment synergy.” This can result in accommodations like communicating in voice and text, like you do in Virtual Ability. Some people who can’t type need to use voice, while others who can’t hear need to use text.

And as you know, the issue of disability diversity is not only present when you talk about different disabilities; it shows up even within a single disability. For instance, this issue comes up a lot in the autism community, with terms like “high-functioning” and “low-functioning.” Many people on the high-functioning end of the spectrum talk about neurodiversity as an alternate way to function in the world. Many on the low-functioning end, or their caregivers, see this as a problem they wish could be cured.

Q- All of your study participants were high-functioning, weren’t they?

TB- I guess it depends on what you mean by “functioning.” High or low doesn’t translate well between different disabilities, and there are personal, social, insurance, and governmental definitions to consider. Cognitively, all participants in this study had to be able to communicate, so in that sense they were high-functioning.

Q- You seem to enjoy your research. 

TB- I have always had lots of good times with all my research. Susan Harding talks about studying the “repugnant other,” and that would be difficult for me. I’ve had beautiful conversations in lovely settings, making the film was magical, and I love doing presentations. I’ve met many people I’ve enjoyed talking with. So yes, it’s been fun.

Q- You enjoyed making the film with Draxtor?

TB- Drax is a lot of fun to work with. Donna and I gave him full editorial control. We were just interview subjects like the others in the film. He decided what to include and what to cut.

Filmmaking is such hard work! I mean, when I am writing, if I get stuck I can push my deadline back. The filmmaker can’t do that. He has to stick to deadlines of availability of people and places. Drax is a good documentary filmmaker because he’s a good interviewer.

Q- You had originally planned to include virtual reality as well as virtual worlds in your studies. What happened?

TB- We had planned to buy VR equipment for our subjects, but the equipment like Oculus and the worlds like High Fidelity and Sansar were not ready in time and were not very accessible. This is a common problem in field work. You need to be flexible.

Actually the unspent money that we had planned to use to purchase the VR equipment was repurposed with NSF approval to make the documentary. We wanted the film to promote the value of social science and reach new audiences. The film is not part of the research, it’s a commentary on it, because the filmmaker had full editorial control. But the cool thing is that the making of the documentary itself did become a part of the research in that it brought people together and stimulated some really interesting new conversations. It’s an example of the saying, “If you are given lemons, make lemonade.”

Q- Were there any downsides to this research project?

Bird's eye view of Ethnographia Island in Second Life
Create an account and
 visit Ethnographia Island in Second Life
TB- We were lucky that we got approval to have an island for the project, which started off as one sim in size and then we got approval to add a second sim to the island after a year. I had never been responsible for a whole island before, and I definitely learned about the management side of that. It was nice to have a home base, a place where we could chat together and hang out. We gave some participants plots on the islands on which they could build, but it was never the intention that everyone involved in the research would be interested in having a plot of land. And not everyone used their land in the same way. Some participants were very active on their plots, others less so, which was fine with us. And of course, everyone involved did things in other places in Second Life, just not Ethnographia Island.

So it would be a misconception to think that the island and the builds on it were the whole project. In addition, everyone knew from the beginning that when the project ended, the island would go away as well. Of course, even when we know this, it’s understandable that some folks get attached to their land and their builds, so another layer of management is helping people with the transition at the end of the project. What’s key for us all in that regard is that while Ethnographia Island won’t be around forever, the community that formed on the island will continue.

Q- You and Donna are both publishing about the project.

TB- We published one paper together so far, and we also work on individual publications. We come at this from different perspectives, so we sometimes write for shared and sometimes for different academic audiences. And of course, we did a lot of collaboration helping out with the documentary!

For more information on this project, please see the project website: Our Digital Selves 

You can view Bernard Drax’s (Draxtor Depres) documentary, “Our Digital Selves: My Avatar is Me,” about the project on his YouTube channel  Video is 1 hr. 15 min. long.

Visit the NSF: National Science Foundation.