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.

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