So what is Second Life?

Simply put, Second Life is a free online 3-D world imagined and created by its 13 million residents. Users, through their own 3-D avatars can explore, socialize and participate in individual or group activities.

Like many things it is a great deal more than the sum of its parts, and this month Sherry Reson explores the exciting times this world has to offer the disabled community.

Another Life

Widget Whiteberry (Ingame name) is, in reality, Sherry Reson, Director of Public Affairs at the Rockridge Institute. The Rockridge Institute is a progressive think tank concerned with metaphor and the cognitive dimensions of U.S. public policy.

The Story of The Heron Sanctuary

by Widget Whiteberry

How Widget met Gentle

I came into SL as a scout for The Rockridge Institute, a progressive think tank concerned with metaphor and the cognitive dimensions of U.S. public policy. Wondering if there is a purposeful role for us in virtual reality, I wandered Second Life alert for signs of empathy, responsibility, and an awareness of the interconnected nature of all our lives. While I had a theoretical appreciation of the embodiment of myself in a virtual space I was surprised by how much I ‘felt’ the experiences of my avatar. My avatar would lose her hair and I would feel embarrassed. She couldn’t walk two meters without bumping into something and making me feel awkward. She would fall off the edges of things or be blinded by walls or lost in transport and I would panic. Signs of my computer crashing felt like symptoms of migraine: I knew it was coming and could do nothing to prevent it. Because of all of this, during my first month in Second Life, I spent a fair amount of time on Help Island, just learning the digital ropes. It was there that I met Pecos Kidd who introduced me to a wonderful new friend, Gentle Heron.

In real life, I live by a tidal marsh on the coast of California. When I first met Pecos in Second Life, I saw ‘The Heron Sanctuary’ above his head. I immediately thought of habitat preservation and places of protection. Pecos told me that The Heron Sanctuary was created by and for people with disabilities. “Hmm,” I thought. “Well, in real life, that involves another kind of habitat or built environment and certainly protection, but also empowerment.” Pecos introduced me to Gentle Heron, who explained what is being created at The Heron Sanctuary. Gentle reminded me that the Heron is a bird that stands on one leg, but still manages to stand. Over the months of our growing friendship, Gentle Heron told me of people contending with sometimes profound disabling conditions, who find purpose and a wider life.

Today The Heron Sanctuary has 125 members. If the 1:10 ratio of disabled to abled in the U.S. holds true, there could be well more than 100,000 people using SL who cope with some physical, mental or emotionally disabling condition, 3,000-5,000 inworld at any one time! And as a friend of mine – a founder of the Centers for Independent Living and the World Institute on Disability – once said: We are most of us pre-disabled; we have only to live long enough.

A brief history of the beginning of The Heron Sanctuary, (as told to Widget Whiteberry by Gentle Heron)

The Heron Sanctuary began not in Second Life, but on the largest U.S. dating website for disabled people, LoveByrd.

There, a group of friends began thinking about the importance of the concept of community for those of us who face barriers to participation in the external geographic communities in which we live. We began asking other disabled people about their ideas and expectations of ‘community.’

From this research, we determined that people with disabilities want the same things everyone else does: we want companionship and friendship especially with people who understand the limitations placed on us by our disabling conditions; we need to learn more about our own conditions, about health and wellbeing, and about resources available to us to make our lives better; we want a chance to be employed or to do volunteer work since both give back to our community; and we want to have fun.

This was really no surprise, nor was it a surprise that these things were difficult to achieve in the world outside our homes.

Those of us who are disabled are often socially isolated, even physically isolated, within our geographic communities.

So three of us from LoveByrd decided to explore virtual reality as a setting within which to build a supportive community. We began to collect medical research about the benefits of operating in virtual reality that accrue to people with different kinds of disabilities.

We visited the websites of a half dozen different virtual worlds, and chose Second Life as the one to colonize, since it seemed at the time to be the richest cultural environment and the most fully developed.

The co-founders came into Second Life in early June of 2007. Several things surprised the three of us right off. One was that we did not get to choose our avatar’s last name, but were to select from a list provided by the Lindens. We wanted to preserve our LoveByrd identities, which were Quiet, Soda, and Gentle. We decided that using the last name Heron seemed to be the most reasonable from those being offered at that time. Choosing the avatar names Sodapop Heron, Superquiet Heron and Gentle Heron, we began to explore SL.

We did not set up our project immediately, since we knew that we had to find out what already existed in terms of support, and we needed to learn how Second Life worked for its citizens. We never thought of ourselves as players in a game, we were always focused on our goal of setting up a support community for people with disabilities.

In our initial explorations of Second Life, we met many kind and generous people who shared with us their understanding about how Second Life operated. Eventually we came across the Accessibility Center on HealthInfo Island. That is where we met Lorelei Junot, who is a RL librarian and is responsible for setting up the Information Island archipelago within Second Life. She allowed us to use a plot of land on EduIsland 4, the plot we are now occupying, and our project began.

We wanted to create a name that identified group members, but did not stigmatize them. (“The Crips” would just not be a good name for us! Besides, it is already taken.) We purposefully wanted our group to include both disabled and nondisabled people. We had by then experienced SL griefing and recognized it for the bullying we experienced as handicapped people in RL, so we did not want anyone to be able to point to someone wearing our group tag and say “There goes a person with a disability.”

We wanted our group name to be evocative of safety and community. And of course the name had to be one that was not already claimed as an internet domain. We settled on the project name The Heron Sanctuary, to honor the “family” name of the three co-founders and to speak of our vision of a supportive community. We happened to meet an executive from a Mexican branding and website creation firm, Pigmento, whose avatar name is Pablo Deza. He became interested in our project, and designed for us the logo with the big blue bird whose legs form the letter E. He understood the concept of Sanctuary as being a safe and welcoming place where people gathered who shared some characteristics and thus could provide a kind of support for each other, a comfortable place for us all to learn and grow.

In the first phase of our project, we focused on finding ways to allow people to come into SL and learn how to operate their avatars.

We learned many ways to overcome barriers related to limited keyboarding capability or alternative access technologies. We also explored ways to inform the general SL public about disability issues, ways to provide sheltered housing and employment opportunities.

We began identifying other supports for people with disability that exist in Second Life, and we are meeting all kinds of wonderful people, with and without disabilities. There are so many success stories in SL; we want more people to be able to tell their own success stories.

So the time has come, now that we have proven we can assist disabled people to come into SL and function normally here, to plan how we can reach out to even more people who can benefit from becoming members of our community. We are in those planning stages now, as we determine the best ways to scale up our services. Our project is ready for this growth.

The Future of The Heron Sanctuary?

Gentle told me that they want to increase membership to a more diverse community. Some new members won’t need as much assistance as others, but some need massive amounts. According to Gentle, “The Heron Sanctuary (THS) is beginning to take in some severely physically disabled folks and is exploring taking in some adults with retardation. We also assist parents and caregivers. We do have volunteers who are licensed and certificated professionals who help our new members adapt to life in Second Life. But most of our volunteers who work with newcomers are peers, both disabled and non-disabled. When a person comes into SL without any access issues, it takes about three to four concentrated hours of work to learn what we term the ADLs (activities of daily living) of SL, such as talking, walking, changing clothes, and managing inventory. THS intake training is at this basic level.

When newcomers are dealing with additional access problems, such as those THS members who have survived stroke and are not able to type with both hands, or whose ability to depress their mouse or keyboard keys is impaired, the training is more intensive and longer. When people with this greater level of need come into SL, the first service they receive from THS is an intake assessment of their assistive technology capabilities and needs.

This allows the newcomer to acquire additional technology if that would increase their ability to learn to function in SL. It also helps THS volunteers know how to adapt the ADL training to use the technology that the newcomer possesses, whether it is a locking track ball, an onscreen keyboard, or Dragon voice recognition software. Adapted training for newcomers using assistive technology takes additional time and volunteer attention, so it is important that THS plan its future growth as more members join us, so that we can continue to provide the highest quality services to new members.”

Real People – Members, Volunteers and Friends

The success of The Heron Sanctuary is due to all the help and support offered by their many volunteers, members and friends. People in SL are starting to recognize the group name, which is good. Here is a brief profile of some of The Heron Sanctuary’s members.

Gentle Heron is a 58-year-old woman from Colorado, USA with multiple sclerosis who also has an extensive spinal fusion. She is raising three children who are now all in college, and is currently employed as a technical writer and editor. She says, “Of the things MS has taken from me, I most miss playing the viola in the symphony. In Second Life, I especially enjoy swimming underwater, going down waterslides, and dancing. But the most rewarding thing is being part of The Heron Sanctuary. I couldn’t find the community I was searching for in Real Life, so I am working to create it in Second Life.”

Sodapop Heron is a 44 year old single man from Canada. He has had TBI (Traumatic Brain Injury) for the past six years, which he got from Stereotactic Radiosurgery. It makes him look like he had a mini-stroke, and he can only now type with one hand. Sodapop says he likes being in Second Life because “there are things in SL I can’t do in RL, like flying for instance.” Soda and Gentle are two of the co-founders of The Heron Sanctuary. Soda says, “I love to help and meet new people. There are lots of really friendly people I have met, and will meet more.”

Medicaid reform activist Namav Abramovic read about people with disabilities using Second Life in the Washington Post, and logged in for the first time on October 20, 2007. Because he has muscular dystrophy, he uses a ventilator to breathe. Namav can’t use a keyboard, or lift his hands at all. As he told Gentle, “I type with my thumb on a trackball mouse and click out text by hitting letters on onscreen keyboard software. I had run a support group online in the past, and am interested in using virtual community to support people with disabilities. I joined The Heron Sanctuary in November, and now have founded Open Gates, a THS project to provide 24/7 peer support in Second Life.” He blogs here: http://nickdupree.blogspot.com/

Kat Klata has secondary progressive multiple sclerosis and uses a power wheelchair 95% of the time. Over the past 6 years, this neurological disease has forced her to give up her career, driving, even riding her horses. “Not to mention the ability to be a valued part of community and society,” she reflects.

After a 2-1/2 year struggle with cancer, Kat’s husband passed away in June of 2006. “It was a very difficult and lonely time in my life,” she says. A few months later, she remembers, “a bus driver told me about Second Life. Little did I know what a positive and powerful impact it would have on my life.”

Having done little on the Internet at that time besides email and card games, Kat was apprehensive about venturing into the unfamiliar territory of virtual reality. “It was a little strange at first trying to navigate an unknown ‘world’ with an avatar which resembled thousands of others. But it wasn’t long before I started meeting other people and making friends. What a difference it makes to have someone help teach you the in’s and out’s of Second Life society.”

Since coming into Second Life, Kat has established herself as the owner of ‘KatCher’s Village Real Estate and the Dragon Inn.’ She is a founder of the Multiple Sclerosis Help and Support Group in Second Life, which is steadily growing as people from all over the world join.

Kat has shared her experiences in Second Life with the general public. She (and her avatar) appeared in the recent Washington Post article about how people with disabilities benefit from being Second Life citizens. Kat believes it is important to “collaborate with the various groups to help build a network of information and support for those who need it. All of these groups are making a huge difference in the lives of others.”

In addition to her MS Support Group, Kat is co-founder of the Open Gates Peer Support Community. She describes Open Gates as “a group for Second Life residents with disabilities-any disability-to turn for support 24/7.” Kat spends a great deal of her time listening to and suggesting resources to troubled SL residents.

“My life would be so much less without Second Life. I have made friends I will have for the rest of my life. It would be a very lonely existence for me without them.” Of her experience in Second Life, Kat states, “Most important, we’re all equals here. I can walk, run, and fly just like everyone else.”

You Can Help

Contributions to The Heron Sanctuary help offset the costs of keeping things running smoothly. Interested people can end an IM to group Treasurer HeronSanctuary

Dusty’s Story

Avatar art in art folder

Dusty is the avatar of an incomplete C4-C5 quadraplegic woman from Texas. Due to a spinal cord injury in her neck, she is totally dependent upon other people to help her in all daily activities. She has a full-time staff of caregivers, 24/7, which allows her to live independently and maintain her career, to a considerable extent.

Several kinds of assistive technology help Dusty be more independent. She uses a wheelchair controlled by a joystick and has an elevator between floors of her home. Dusty has a ceiling-mounted transfer system to move about between rooms.

She uses Dragon Naturally Speaking software to access her computer. This voice recognition software allows her to speak, and then types text or moves the cursor about on screen.

Dusty was injured in 2003. Last month, she made her first airline trip since her injury, to the Shepherd Center, a first-class rehab facility in Atlanta, GA. There she was evaluated for adaptive driving, and will soon be tooling around town in a special car using hand controls.

Dusty came into Second Life about four months ago. She had read an article about the virtual world in the ‘Wall Street Journal.’ She didn’t exactly know what to expect, and was on a week of enforced bed rest, so she decided to explore SL to pass the time. It took Dusty about two days to get past Orientation Island, which is the first stop for all new avatars. The next stop is Help Island. There someone told her it was critical that she learn all about scripting, so she left the island.

She found she was not adequately prepared to function in Second Life. For a day or two, she wandered around aimlessly, asking for, but not receiving, assistance.

Dusty’s “newbie” appearance attracted the attention of Pecos Kidd, an SL Mentor, whose responsibiities include assisting newcomers to SL. He quickly assured her that she did not need to become an expert in scripting to enjoy herself here.

Dusty told Pecos, “My typing is bad because I have to use voice-activated software. Another problem I have is limited use of my right hand. I am also a wheelchair user.” Pecos remembered seeing signs advertising The Heron Sanctuary, so he referred her to the program. Dusty was evaluated for her use of assistive technology, which helped The Heron Sanctuary members understand better how to help her learn about Second Life.

Observing this process, Pecos says he “quickly became amazed at what The Heron Sanctuary was able to do to help people. I met a community of wonderful people. The power of what THS means to people – opening up a whole new world to them – quickly hooked me.”

Most importantly, Pecos realized “it is far more than a “game” to many people.” And it quickly became so for him as well. Pecos became a THS volunteer.

Pecos then convinced Eme Capalini to become a THS volunteer and learn about becoming a newcomer trainer. Eme began to assist Dusty in learning the basic skills for successful SL functioning. The two women bonded during many shopping trips, outfitting Dusty’s avatar with a new shape, new hair, new outfits. They share a love of high fashion, and like to be exquisitely turned out.

Between them, Pecos and Eme taught Dusty all the skills she had missed by leaving Orientation Island early. Dusty explains, “Pecos and Eme have taught me 98% of what I know about SL.”

When asked to explain what she gets out of being in SL, Dusty says, “It means as much to me as it does to many people.” She goes on to say, “I think what you are doing with The Heron Sanctuary is the most exciting thing I’ve encountered in SL. Of course, meeting you, Pecos, Eme, and the other people you have introduced me to here in the Sanctuary is just wonderful. I can’t imagine not having you and my other friends here in SL in my life. I believe it’s part of the 21st century method of interacting and socializing, all made possible by the Internet.”

www.virtualability.org/

Virtual Ability, Inc. is a non-profit corporation based in Colorado, USA.

Their mission is to enable people with a wide range of disabilities to enter into electronic worlds such as Second Life®, and provide them with a supporting environment once there.

VAI is achieving this mission by:

• Conducting outreach and awareness activities to inform the disabled, their doctors, and their caregivers of the benefits virtual worlds can provide;

• Identifying the need for, and supporting the use of, assistive hardware and software;

• Providing assistance with the signup, intake, and training process of entering a virtual world;

• Offering ongoing support and community as residents become integrated into the virtual world.

VAI presently operates a project inside Second Life® known as “The Heron Sanctuary.”