Interview: Ruby Vandyke and Boston Medical Center Research

Interview with Ruby Vandyke, June 14, 2018

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 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.

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.

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

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.

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.

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

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.

Our Digital Selves Film and Interview with iSkye and Slatan

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

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

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

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.