Second Life lost a great presence on Sunday, when
Soj died. She was someone who discovered ways of using the technology of virtual worlds to help people who really needed help. Many people who are more eloquent than me have left tributes hinting at the loss to our virtual world; please take some time to visit her
memorial site and donate whatever you can afford to keep the project running.
I first met her shortly after I discovered Second Life and interviewed her for a newspaper article... of course it was cut to a few paragraphs but her answers are thoughtful enough to reproduce in full, and may give an insight to those who never met her into why she will be so badly missed.
Interview with Soj, Feb 2006
First I would like to add a Question.
(What is Brigadoon?)
Brigadoon is a private, closed island, meaning that people can travel to the Mainland in Second Life (SL) but people who are on the mainland can not get into Brigadoon without permission from John Lester. Brigadoon doesn’t even show up on the SL map. This is an important feature. It allows us protection, structure, and the ability to become a family. Brigadoon is more than a place. It is a community of people who have learned about each other and become friends. While most of us explore the outside world (the main grid), we come back to Brigadoon because it is our “home.”
Why did you start visiting Brigadoon ¬ how did you get involved?
When John Lester first posted the notice asking for people dealing with Asperger Syndrome on the BrainTalk forums, I responded thinking it might be something my son might enjoy. He has Asperger Syndrome and likes computer games. He was 15 at the time and I wanted to check it out to see if the game was appropriate and would interest him. I asked John to admit me. I was not in the first group admitted (Coos, Helga, Ginger, Rain) but followed shortly after.
This was my first online “game” and I am not computer saavy. Plus, as a stroke-survivor, I was a little slow picking up on how things worked. The first thing I found was that I needed a better video card. Second Life is very dependent on having the proper computer system.
The second thing that I discovered was that SL is not a “game” per se. SL truly can be a second life. It has an economy. People can work there. They can be entertained. You can walk through a park, go to the store, go to a fair, engage in “adult” activities, play games, gamble, work, you name it… anything that you can do in real life, you can do in Second Life.. with (maybe)the exception of bodily functions. The creativity of the people there will probably bridge even that gap eventually.
Many people go to SL to escape. There is considerable role-playing in some areas. Some people choose a character that is unlike themselves, physically or socially. Others choose someone very like themselves. I have noticed that there is a tendency to make their avatars (characters that represent you) to resemble the real person at first, especially in shape and then gradually change it. In addition, there is a tendency to want land and a home as part of the initial comfort zone. One of the first questions is often.. “How do I make money?”
Needless to say, my son who enjoys action computer games was not interested in SL. It did suit me, though, and as soon as my computer was up to it, I became a regular. When I first joined Brigadoon, I had no expectations because I didn’t have a clue as to what it was. However, I wanted to remain among the “Dooners” to learn from them and to understand better the things my son thought and did. It has been very helpful in understanding the challenges he will have as an adult.
How often do you go?
I consider Brigadoon “home” in SL. I have a house there. It is where I go when I want some quiet. I can sit on the front porch of my house and see fabulous sunsets and sunrises across the water. When I first started in SL almost a year and a half ago, I spent all my time there with brief forays to the mainland for classes. Now, I go for the weekly meetings on Sunday. Generally, they last a couple of hours. Occasionally, if someone is there during the week, I pop over there to chat or if I have a need to “refuel,” I go there for that too.
What do you do when you visit Brigadoon?
Socialize basically. I have rebuilt my little house/area several times. It is where I keep my SP treasures and momentos since I don’t have a house on the mainland. Sometimes I build or clean out my inventory. Mostly I go back to socialize with the other “Dooners” or teach one of the newer members building skills.
How has Brigadoon changed since your first visits?
It has changed a lot. When I first went, everyone was learning about each other. The land was relatively empty. Now, most of the group knows each other pretty well and the land is built up as people gain new skills. In the last few months, we have admitted a number of people from the main grid - two who have Asperger and one who is a teacher of children with disabilities. As in any group setting, the admission of newcomers changes the dynamic until they also become a part of the family. We are contemplating on bringing a few other people who have applied into the group but then the island will be at capacity… not only size-wise, but interaction-wise. That was the impetus for the Brigadoon Explorers. The Explorers will “live” on the mainland and but will have the Brigadoon network of people available to them.
How has it helped you with regard to your son (eg meeting other
parents/teachers or adults with AS)?
Asperger Syndrome is a syndrome, meaning that it made up of several common characteristics but each can vary in the degree to which they affect the individual. In addition, many people with AS have concomitant disorders such as Attention Deficit Disorder (Hyperactive or not), Non-verbal Learning Disorders, Dyslexia and more. However, in watching and listening to people with Asperger (both in SL and RL), there are some characteristics that are stonger than others across all individuals. In talking with the adults in Brigadoon who have AS, I have gained many insights into my son’s behavior in seeing what may be due to the AS and what is just a part of his personality. I see him reflected in them and them reflected in him. It has helped me ask better questions of him so that I understand his attitudes and actions more clearly.
One of the most frightening things that has come up is an awareness of how tentative a happy, successful working life will be. A number of the group has mentioned how difficult getting a paying job commensurate with their abilities is. The interview process is problematic. They have the knowledge, the ability and the skill. However, because of the social skills component (sometimes the lack of facial expression or verbal enthusiasm, bluntness, having a different interpretation of abstract statements, etc.), they are passed over for something they could do as well or better than their job competitors. Knowledge is not the problem. Translating that knowledge into a good interview is difficult.
Why do you think it¹s popular with people with AS?
Hmmm. I don’t think it is popular just with people with AS. I think it is popular with a wide range of people. I think that those with a technical knowledge of on-line games and a curiosity about what is possible are drawn to it. Many AS people fall into this category but so do other people.
So many people comment on its uniqueness. I act as an SL Mentor which means that I can meet many people as they come into SL. Very often, new people are amazed at the possibilities and the different nature of this on-line adventure.
People with a lot of various conditions and disabilities appreciate SL. There are a lot of people with debilitating arthritis, cancer, and chronic depression to mention a few. In Second Life, they can live a life with social contacts reaching personalities and countries that are not available to them otherwise. No one need know your RL difficulties or personal characteristics unless you tell them. You can be you without the trappings. It is not a surprise that the people who spend the most time there have something that keep them from working a full job in real life. Those that do, don’t have time to spend all day there.
In terms of Brigadoon, I think that the ability to be around people with many of the same types of experiences is refreshing and validating. Problems that were considered unique became shared experiences and took some of the sting out of them, increasing understanding. It also gave the opportunity to realize that many of the things that were bothersome to a person with AS were also bothersome to people who did not have AS. I think the ability to be among people sharing a common goal.. to make connections and explore friendships in a safe environment was key.
SL is often referred to as an Œonline game¹ ¬ but it¹s much more than that,
how would you describe Brigadoon ¬ what does it mean to you?
I think I covered this one in the paragraphs above.
What is ShockProof?
ShockProof is a group of stroke (brain attack) survivors, people who have suffered TIAs (Transient Ischemic Attacks), and others interested in the support of stroke survivors. I was told that the word “shock” refers to stroke in some places of the world.
When and why did you launch it?
ShockProof was launched in December, 2004. I am a multiple-stroke survivor. I was finding that participation in Second Life was giving much needed socialization, improvement in executive function skills (planning and executing things), increasing activity stamina and better short term memory skills. As a wife and mother and someone who no longer had many of the avenues of self-expression previously available, I found it valuable as a way to delve into new vistas of creativity. Things that had been put aside could now find their way to the fore. There are so many ways to express yourself in SL and so many new things to learn.
I thought that the way that John set up Brigadoon would be ideal to a person with stroke. I didn’t feel that the private island would be necessary because I think that most stroke survivors will want to dive into the mainland activities fairly quickly. However, it is very important to the stroke survivor to have stability and a way to draw on something dependable in order to be able to feel secure in learning new ways of exploration. That would demand a place to “be” – a home such as John provided us in Brigadoon. It would also demand an easily accessible learning grounds.
As a way of discovering whether there was an interest in SL, I turned to the stroke forums in BrainTalk, which I had frequented pretty much daily since 1995 after my first stroke. I actually discovered it earlier, soon after it started, when we were researching Arachnoid Cysts (a brain cyst) which my son had. Two people immediately signed up. So I had to shuffle quickly to find a place for us to meet. John Prototype lent us a temporary place to meet on his land. Shortly after that Rain and Coos from Brigadoon also offered assistance. Coos had spent time on the mainland and he generously donated a considerable area for us to begin ShockProof. He and Rain had both suffered TIAs so they also became members of ShockProof. Unfortunately, things transpired that we had to sell the land.
I feel that there are two things necessary to make ShockProof work (outside of having a membership) – a place to “be,” meaning a home base with a physical component that you can retreat to or entertain and an easily accessible place to meet others to help you along and to explore your possibilities. After selling the land that formed the first ShockProof land, efforts to develop the group that would assist ShockProof members was the first priority. I learned early on that one person could not be the sole support system for the education and emotional needs of a group. That is where Dreams came in.
Until recently, we did not have land for housing for new members. We now have limited accommodations for about a dozen people. Land is very expensive in LL in terms of the monthly US$ fees. It is tied to the number of objects a person can own or have on the land. Therefore, the more objects needed on the land, the more it costs to have enough land to support the individuals living on it. Right now, Rick Kent, a ShockProof member and John Prototype provides some assistance in keeping the land we do have for ShockProof and Dreams. However, more is needed to support our activities and membership. Funding is a problem.
When and why did you start Dreams ¬ what¹s on it so far?
Hmmm. I started Dreams right after we sold the ShockProof land, probably about a year ago.
When I first started ShockProof it was due to the unexpected arrival of members when a structure was not really there for it. After realizing the importance of a home base to the group and the need for an expanded support base, I formed Dreams.
Dreams is our home base for the Dream Travelers (membership), Dream Weavers (officers), ShockProof activities, Brigadoon Explorer meetings, and is an area for people new to SL to come and learn and practice skills in a safe environment. The purpose behind it is to provide a place where people can come to explore their ideas and “dreams” in an atmosphere that fosters creativity. We have tutorials and materials for new individuals. We have a core group that visit most every day who have interests in vehicle making, clothing design, the arts, building, scripting, exploring science through SL, etc. These people swap their ideas with each other and are willing to help newcomers find ways to accomplish their own “dreams.” In addition, we have people outside of the Dreams network who are often open to calls for “help” when we don’t have the answers.
This is to be the activity center, not only for the Dream Travelers, but for ShockProof.
The physical plant of Dreams consists of 3 parts:
1. The stage/tutorials/and small sandbox. The stage can be used for teaching classes or practicing things learned in the tutorials. The self-learning tutorial covers building and managing your inventory. Cid Jacobs scripted the actual book style tutorial while I wrote the text. I had to learn aspects of Photoshop to do this as well as some minor scripting. A sandbox is an area to create things.
2. The Events area. I feel that it is important to the learning process to not just learn about things but to put it into practice. So, we have a slice of land devoted to putting on events. In the past, we have had landscaping contests, a Christmas in August competition showing various concepts of Christmas in a warm month, a Haunted House building contest, a Thanks-Giving contest using SL tools to express things you are thankful for and how you “give back,” an art exhibition, and a sculpture exhibition. The events are open to all people in SL. However, I make sure that the people in Brigadoon and ShockProof are included as much as they can be. Coos, Rain, Helga, and Amalthea from Brigadoon have been particularly active in events and event-creation. The art exhibition had many RL artists bringing their work into SL. Next week we will start a home building competition. That will be followed by a Cultural/Educational Fair with various “helping” and Cultural groups being featured for a few weeks.
3. We have a small store containing items developed by Dreams members. It includes small houses, paintings, clothing, textures, and a small freebie selection, as well as a large plant selection in the garden. (a few rabbits and frogs, too).
Each time the store has been built (it cycles through new builders each month or so), it has been the first building project of a Dreams member.
The ShockProof land is on a peninsula attached to Dreams.
How has it helped you and other stroke survivors?
Have you ever heard the phrase, “Use it or lose it?” While the physical therapists and occupational therapists stress the part you can see, so many times the part you can’t see is left behind. The cognitive piece and the part of you that is frightened or is “lost.” SL provides a method of massaging and providing a platform for both. Maybe the person who sleeps in a chair most of the day does it for lack of stimulation as much as the after-effects of stroke.
I feel that a stroke is debilitating on so many fronts. You can lose your friends and family because they may not know how to approach you or how to talk to you. Sometimes people automatically feel that a person with a stroke has become less intelligent. Stroke is not confined to the elderly. Many, many stroke survivors are still in their working years. They lose their identity as a person, as a care-GIVER, as a self-sufficient person because they no longer stand in the world in the same way. There is no going back, even in strokes from which you “recover.”
Many stroke survivors become isolated… not only because they may be less physically able, or less communicatively able, but because they no longer know how to reach out into the things they were familiar with.
SL has the potential of providing a new network of friends within a realm where your physical deficits are not visible. Your age is not apparent. Your desire to explore and learn is solely dependant upon yourself. Most people are friendly. There is practically any avenue that you want to explore there for the taking. There is skydiving, fishing (I won a fishing tournament…), hiking, flying, you name it. For people who lost their job identity, there are people functioning as wedding planners, ministers, teachers, architects, landscapers, builders, accountants, shop owners, beauty consultants, the list is endless.
When I started SL, I was hampered (a lot) by stamina, the loss of outside contacts, short-term memory problems, problems projecting and carrying out plans, following information, multi-tasking, and so much more. In the last year, all of those areas have improved. I have met supportive people from all over the world… many very different than I. Other members of the group have expanded their interests and willingness to socialize as they have tried new things.
I used to teach and that was closed to me. When I first started SL it was depressing to see how difficult it was to understand the process I needed to follow and to attempt things that used to be easy but no longer were. But, it came along in bursts and trickles. Now, I can explore skills that I had in my prior life through a new avenue.
One of the things it can have the greatest impact on is providing a sense of purpose and accomplishment. Something of which the stroke survivor often has a limited supply.
How many members do you have?
Right now our number is limited. Activity was slowed because I didn’t have land for housing. There are 3 members who have had strokes and 2 who have had mini-strokes (TIAs, the long-term effects are briefer). We also have 2 members who have an interest in stroke because of family members who have vascular disease or in the area in general. I would like the group to be a mix of stroke survivors, individuals with lesser impact such as TIA, caregivers, and other interested parties. This increases the quantity and quality of support as well as enlarges the knowledge base on stroke.
Last week, I re-opened the membership drive since we now have housing. So, we are in that portion of our plan for ShockProof again. The underpinnings of the project are there.
Why do you think SL is such a useful therapeutic tool?
It lets you be whomever you choose to be. You do not have to have any physical deformities show. You can let your inner person show through. You can explore areas normally not in your grasp. You can meet and learn about so many people you would never meet otherwise. You can reveal who you are at a pace controlled by you. It is amazing to watch the growth in people over time. I have seen it in Brigadoon and I have seen it in Dreams and ShockProof. People who are closed and protective begin to open up and explore relationships and themselves. Soon, they are expressing themselves and doing things in ways they thought they would never do. Most everyone I have talked to in SL who spend any time there say that things they say and do in SL moves into RL (Real Life). (Aside: We were laughing at Dreams the other day how sometimes when we are talking in real life we catch ourselves saying LOL (laugh out loud) or BRB (be right back).)
SL gives you the opportunity to practice new things using old tools. Or, in the case of some of us.. to be able to practice social and compensatory techniques in a place that doesn’t impact the people who are around us on a daily basis in our real lives.
Learning is growth and growth is Life. SL can give us a second avenue to life.
Now, you didn’t ask about this but there IS a down side to SL and it should probably be mentioned because all of us in Brigadoon and ShockProof have encountered it.
1. The people in SL bring to the game everything that they are in real life. Behind every avatar (the characters in SL) is a person. Therefore, regardless if they are role-playing or not, there are personalities, histories, expectations, and intentions. The externals of social status or physical appearance can be wiped away but not the internal nature of the person. Therefore, social interaction in SL while ripe for new communication and methods of communicating, is still between individuals who express joy and sadness and can be supported or hurt. The problem with SL is that it is a condensed, intensive life. And, because you don’t have the timing and visibility of RL, changes in relationships in SL can be more intense. You can not always contact a person about a misunderstanding because the person is not available to you if he/she is not on-line. Or, you may not be able to follow-up on a positive relationship for the same reason. RL may intrude all of a sudden calling you away and you may have to leave people who depended on you clueless as to why you are no longer in their world. The instability of reliable SL relationships can be a problem unless you bring them into RL. Some people do cross the divide but you have to be careful, as in any internet relationship.
2. SL can be addictive. You need to balance your RL and SL. If you start to get too busy in SL where it is infringing on your family and real life activities, you really need to pull back a bit. SL has the ability to pull you along because every action you make is the predecessor to another. People pop in and out in an unscheduled manner so you have to be able to balance your needs with their needs. While the intensity of SL can be a good tool to learn about yourself, you have to keep it in balance with your application in real life or things become too stressful. Something for relaxation can become harmful. Several people I know have had to take breaks from SL or had health conditions worsen because of the degree to which they get involved with it. For that reason, I, personally, would not recommend it to a person with an addictive personality or who is chronically depressed. I have seen bad results in both cases.
3. SL is a business and an evolving technology. While Linden Labs is trying to create a new world which is constantly changing, it also needs to stay solvent. Their initial basic membership plan is free. Which is great. You can live at Second Life the whole time you are there without paying a penny if you have the right computer system if you are not interested in having your own space. Space costs real dollars. The Premium membership has a yearly fee and if you want land, there is a monthly fee as well based on the amount of land you have. The thing is, if you have belongings that you want to display, they consume prims (the basic building unit that makes up all objects and structures in SL). The number of prims are tied to the amount of land you have. So, if you want to do anything elaborate, you can end up spending quite a bit of money each month and that may hamper some of your activity (or in my case, ability to provide for the group).
4. The rapid evolution of the technology and needs of SL often creates frequent updates and a lot of lag (slowing of activity/motion) within SL. This can be difficult for a person with a disability because it adds to the lack of dependability in their activities. The ability of your computer is partially tied to the lag but often it is tied to the growth of the game itself.
Soj (The Sojourner)
