h1

Class 7: Online Communities and Relationships

March 20, 2020

At the class field trip to Virtual Ability Island, hosted by Gentle Heron, we met residents and guests who shared fascinating insights with us.

The class field trip to Virtual Ability Island, as guests of Gentle Heron, was a real success. Unfortunately – as it was the first meeting following the closing of Universities in Ireland in response to the Covid-19 pandemic – fewer students than usual were able to take part. Some clearly had difficulty with their broadband connections (two of the six students attending dropped out as class began) which we hope will be resolved for the next class. In any case, John will survey all participants to determine if we can continue properly in SL.

Gentle Heron, the founder of the Virtual Ability community welcomed us warmly and told us that Virtual Ability Island (VAI) hosts this module every semester to talk about ‘the glue that holds the community together’. She explained that she would be using text plus voice, the normal practice in VAI where people with diverse abilities are supported. Formerly an educational researcher before being medically retired due to multiple sclerosis (MS) she said she intended covering five topics.

Who is the Virtual Ability community?

Virtual Ability is an international cross-disability peer support community of over a thousand members. We’re international because the people in the community come from six continents. Cross-disability means our members who have disabilities may have a physical disability, a mental or emotional or developmental disability, or a sensory disability (deafness or blindness). Many of us have multiple disabilities. We offer peer-to-peer understanding, support, and education. Sometimes it’s important to communicate with people who are most likely to ‘get’ your concerns, your language, your point of view. That’s why most people with disabilities seek to relate with others like ourselves. But we don’t want to live in isolation from others who do not share our disabilities. We are not a virtual ‘leper colony’. About a quarter of our members do not (yet!) have disabilities. We call them TABs, temporarily able bodied. They may be a parent, spouse, child, or friend of a person with a disability; a professional or non-professional caregiver; an academic researcher; medical professional; or an educator. Our community has been in SL for almost thirteen years, so we have a good record of continuity. We won the first Linden Prize back in 2009 for a project that has ‘a tangible impact on the real world.’ We are one of the original Community Gateways into Second Life, authorised by Linden Lab. So we are recognised well beyond our own community. We are supported in virtual worlds by a US nonprofit corporation, Virtual Ability, Inc. Our community assists people with all kinds of disabilities to enter and thrive in virtual worlds like SL. Virtual Ability offers various educational and entertainment activities daily. We also encourage members to explore all the fun things to do and beautiful places to explore throughout Second Life.

What is the relationship between real and virtual (online) communities?

What I want to express in terms of this question is that I have to reject the term RL for real life when it is used to distinguish the physical world from the virtual world. Some avatars may not be realistic if by realistic you mean a replica of the individual sitting at the computer operating it. But they are realistic in terms of the person who created them. Our avatars express our personal sense of self. But I have found that communities are quite similar in both venues. (more on that later)

Why is it important to consider the rules and etiquette of a virtual community?

This one is easy to answer. You should consider the rules and etiquette of any community you interact with. But a caveat, not all the rules and community standards are written down. That is why ethnographers understand that a casual observation of a community is inadequate to understand it. You must spend time immersed with the community before you will really know how it functions. If you disregard community rules and etiquette, even by ignorance of their existence, you risk having a less than optimal and limited understanding of that community.

How are online communities developed and maintained?

First, why do I consider Virtual Ability to be a community? Some definitions of ‘community’ are based on geographic proximity. That’s not us. Nor are we culturally similar. In fact, we embrace diversity! The population of persons with disabilities is the largest minority group in the world, and is the most varied. In our VAI group chats, we often hear ‘Oh, I didn’t know [people with that disability] had that [symptom] too.’ or ‘Wow, we have the same diagnosis, but your life is really different from mine.’ Our diversity is a constant for all our interactions, requiring a group value of respect and accommodation. So we aren’t ‘together’ physically, and we aren’t really very similar. However, we definitely exhibit other aspects of community:

  • Our members form both close and informal relationships.
  • We promote mutual support among members. We ask potential new members what the community can do for them, and what they can do for the community.
  • We share common values and beliefs. One important one is our emphasis on Ability, not disability.
  • We offer organized interactions and activities. Some of the most popular are campfire chats and dances.
  • Most members exhibit a strong sense of belonging to the community.

On our Healthinfo Island directly to our west, we are focusing not on disabilities and impairments, but rather on health and wellness. You will find educational exhibits and displays, a pavilion listing research opportunities, and the Path of Support. The Path of Support lists information about the more than 120 disability peer support communities we have identified so far in SL. There is a list of the current month’s exhibits and displays on a notecard in the giver box in the centre of the cabana. Our community has three residential islands, with private properties around the edges and public land in the central area. On Cape Able, there is an art gallery on the public land; Cape Serenity hosts a library. In both the art gallery and the library, we offer only works that are created by persons with disabilities. That goes along with our emphasis on the abilities of people with disabilities. Another notecard in the giver box tells more about the SL islands our community maintains. You are welcome to visit our public areas any time. You can learn more about the VAI community at our website.

And how does our community develop? I would have to say it is organic, through biological-like processes of accretion and evolution. We have a niche on the larger SL ecosystem, and we specialise to fill that niche. We are maintained through the continued interest and volunteer time of so many wonderful community members. Let me introduce some of them to you now.

Q&A with VAI guests
iSkye, Suellen, James, Mook, Celene and Slatan are all going to introduce themselves to you. Then when they are all finished with introductions, you will be able to ask them questions about their experience in virtual worlds. You can address your question to one of them, or to any of them. Please type your questions.

iSkye Silverweb is completely deaf in RL. She has worn a hearing aid from the age of five, learned to speak, and became a highly literate, and voracious, reader. Reading books, she never had to worry about missing anything anyone said. She never had to ask ‘What did he say?’ as she did about TV shows, only to be told ‘Wait for a commercial’. iSkye lost all hearing about twenty years ago, and when that happened, she got tinnitus. Her doctors don’t know the cause; they guess it was due to cochlear otosclerosis. It seemed to iSkye that a switch was flipped. Bye bye hearing, hello tinnitus. Lipreading became an exercise in frustration. Over the years she has seen ICQ, IRC, AOL, Cybertown – she’s been there, done that. Until SL. Members of the VAI community will say ‘I am more me in SL than I am in the physical world’. It is difficult to imagine how valuable that is for a Person With a Disability (PWD). Her first friend in SL was a blue-haired girl named Mucaro India. ‘Hello. Can I help you?’ Those five friendly words in text made a all the difference. At that time the voice capability had just be added to SL, where communication was through text chat. It was generating much excitment among residents who were trying it out. Great for them: useless for iSkye. But, with Mucaro’s help she made more friends – a ‘Dead Ghost’, a dinosaur named Orange, a robot named Tin Man, and Gentle. All willingly used text to converse with iSkye, who felt like an Alice in Wonderland – just a little female avatar! She learned that all her new friends have different disabilities yet Virtual Ability brings them together as a community of support. They all get disability here. The name Virtual Ability is clearly not an accident. iSkye was given, and also found, ways to be useful and to help people and made many friends along the way. Being invited to do things in spite of protesting, ‘but I am deaf!’ and being told ‘we don’t care, join us’ was empowering. SL does not cure iSkye’s deafness or tinnitus but it does provide relief from the feeling of being closed off from the worked that she knows is filled with noised and voices. SL is such a visually rich environment, and the avatars she met and the friends she has made help her cope with that isolation. She can communicate with people, do things, and create art. Members of the community can express their real selves in this virtual setting, instead of their disabilities. That is essential for iSkye’s health.

Suellen Heartsong is a member of VAI and helps out with the estate managers, participates in conferences and events by voicing for those who need that help and generally helps where needed. She is also an Ambassador for See Yourself Heath, a project that works with people dealing with diabetes. Suellen is also editor or the VAI Facebook page. She participates in many of the group events and classes and particularly enjoys Campfire hour where chat and gossip combine in mutual support. Virtual worlds open up so many things that Suellen is unable to do in RL: dancing, being a DJ, meeting her now RL husband in SL and making friends all over the world. She met James and they became immediate friends in March 2012. They traveled back and forth by train for a year between Denver, Colorado and Oswego, Illinois getting to know each other in RL. In 2013 she moved to Colorado to be with him and has lived there happily ever since. They married in RL on Leap Day 2016 so celebrated their anniversary this year. Not every relationship in SL becomes RL, sometimes people are far apart and cannot meet. Suellen is fortunate that she was able to move across the US to be married to James in both worlds. They still enjoy their SL time dancing and listening to music that they are not able to do in RL. Suellen has diabetes, a heart condition and PTSD that she and James deal with together as a couple.

James Heartsong tells us that his name in SL it Peaceful James. He chose the name as part of his personal ‘rehab’ work when he came to SL to follow up on an article in the National MS Society’s Magazine. Prior to be disabled with MS he used to work 40 to 60 hours a week at HP, teach at a martial arts studio most night and weekends and once a month he would spend the weekend with his National Guard unit (a special forces A-Team). All of this was in addition to being a father and husband. It all went away when MS came to stay. He was not exactly a ‘peaceful’ man back then. He discovered that stress was aggravating his condition so now avoids it. His name in SL and his entire approach to life had to change. He did a lot of inner work to reduce the underlying stress levels and became more peaceful, loving and kind. Since he started these holistic changes his overall health improved a lot, although his remains disabled. Changing from the inside out made him a better man and eventually brought him to Suellen. One of the things he learned in Special Forces was to help people to learn how to free themselves. Now he is not teaching people how to free themselves from foreign oppressors but tries to teach them how to free themselves from their personal concerns. He has learned also to focus on his abilities rather than being depressed by what he can no longer do. He concluded by saying that ‘I may have MS but MS does NOT have me!’

Mook Wheeler was a university lecturer in the social sciences until early medical retirement over a decade ago. Her discovery of SL was a blessing, she says, because it provides a method of interacting with people that does not carry the extreme stress that face-to-face, eye-to-eye and voice-to-ear communications do. In the physical world, social interaction always exhaust and destroy her; in SL, it often invigorates and lifts her. Like iSkye, this virtual environment is essential for her health. She says she has only been able to ‘be myself’ in SL. Until discovering SL she had no idea that she had never ‘been myself’ in the physical world. She shared two notecards with us. Worlds Apart attempts to explain why SL makes Mook more ‘normal’ than RL. It is a detailed and very well written piece that gives great insight into her experience. Regrettably it is too long to share here. The other notecard Socialising in SL is shown below.

Mook Wheeler, who has Aspergers and is on the Autism Spectrum, shared this notecard with us.

 

Mermaid Celene told us that Virtual Ability is her virtual home; the community means a lot to her and VAI has helped her through difficult times. Being able to come here allows her take her mind off the flashbacks and terrible memories of her past. She loves volunteering in whatever capacity she is needed and sees it as part of her way of giving back to VAI. She suffers from retinopathy or prematurity, glaucoma and severe PTSD and it totally blind. She used to be partially sighted so has a deep love for bright colours which she expresses with a huge inventory of ball-gowns! Her love for bright colours keeps them alive in her head because she can remember what they look like by comparing them to objects she has seen. For example, she will ask her husband what shade of pink an item is and his response is flamingo pink of kindle pink. Kindle pink refers to the baby pink cover of her old reading device. The same goes for colours like sky blue, pool blue, apple red, fire engine and home depot bucket orange. She is also lead Radegast mentor. Radegast is a text-based viewer that allows the blind to access SL. When not working in VAI she loves to fish and explore SL. Sometimes she just sits in her apartment and listens to the sounds from her bubbling aquarium which she words, or finds a quiet place near the Canadian geese in the pond at Cape Heron, the residential community apartment sim. Celene has made lifelong friends here and for her, VAI is a lifesaver.

Slatan Drake is Italian and a veteran who suffers from PTSD. He considers SL the best therapy he has had in years. He is an SL old-timer, mentor, linguist, artist and photographer, is endlessly curious and eager to share what he learns. His mentoring career began about twelve years ago when the programme was officially managed by Linden Lab. He is now a Mentor and Tutor in several groups but a special mention goes to Virtual Ability Group with the specific purpose of simplifying SL for those residents with different abilities to whom he gives distinct classes. As an artist and photographer some of his works are permanently displayed in popular Art Galleries around the Grid. If you meet Slatan you can right-click his avatar for more information in his Profile. He concluded by recommending a viewing of Our Digital Selves: My Avatar is Me a full-length feature about SL residents, including James and Suellen Heartsong.

Chenming asked if the two couples who met in SL prefer online or offline. Suellen responded that she liked both, depending on what is going on offline. iSkye, Celene and Slatan agreed. John suggested that it can be difficult to differentiate between SL and ‘RL’ as they are both so real. James responded that he enjoys SL particularly when he is suffering higher fatigue levels… but he really enjoys RL even better because he can reach out any time and touch Suellen. He added that kissing in RL is much more fun than it is in SL! On the other hand iSkye and Slatan are only a couple in SL because they live in separate countries in the physical world. They are able to spend time together in SL.

Sitearm asked if any of the guests are ‘builders’ in SL. iSkye shared a link to a video of a build she made as part of the Liden Endowment for the Arts. James has a link to a video of one of his builds in his profile and Slatan shared a link to a video of Crumbs from my Nightmares, an art installation in SL. It takes time and practice to become proficient at building in SL but all the necessary tools are built into the environment.

The final piece of advice from Gentle and all the guests is to suspend your preconceptions about SL, and virtual environments in general, and especially do not think of SL as a game. It is a platform where you can play games but it is not a game in itself. There are colleges here offering classes just like this module, communities like VAI, towns, museums and much more. Slatan explained it wonderfully saying:

Second Life offers the great opportunity to free our essence, with an explosion of feelings, socialising, activities, colours and creativity beyond our imagination. I am what I am, but in Second Life I am what I wish!

James gave an insight into how SL can actually influence people’s abilities in the physical world which is explained by the concept of ‘mirror neurons‘ and Mook shared a link to a YouTube movie about the impact on a woman with Parkinson’s.

Gentle invited the students to explore VAI and subscribe to the Google calendar of upcoming events. This may become a more significant opportunity than we might have expected as we are all confined to our homes over the coming weeks.

John concluded by saying thank you to Suellen, James, Celene, Mook, Slatan, iSkye and Gentle. ‘We are really grateful to you for sharing your experiences and stories with us this evening. It has been a privilege for us. Hearing about your community has given us new insights into the possibilities offered by virtual communities. It is particularly interesting to be here at a time when the physical world has suddenly become an unknown place for many of us due to an invisible danger. You have given us much to think about. Thank you all very much. And special thanks to Gentle Heron: in my view you are the Queen of SL!’

One comment

  1. […] a more detailed report on the presentation see the post from the visit to VAI earlier this […]



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: