In the virtual world, Dot disabled find their voices
Nine special needs adults in Dorchester have found a world where their disabilities are invisible and their voices are heard. It's a three-dimensional, virtual world called Second Life, where users or "residents" log on to socialize, connect, and create with other people around the world.
The group of nine, who all have neurological diseases such as cerebral palsy and attend the Bay Cove day-habilitation program at Kit Clark Senior Services' Codman Square location, are not just leaving their wheelchairs behind when entering Second Life. They're shaking the stigma and the frustrations that accompany their first lives, where they feel their disabilities define them. Not only can they walk and talk with ease in Second Life, they can fly on magic carpets, build islands and relationships, and communicate in new ways.
Together they make up the avatar known as Wilde Cunningham, a man they adorned with orange skin and orange spikes of hair jutting out of his head. They first discovered Second Life in 2004 with their former case manager June-Marie Mahay (known in Second Life as Lilone Sandgrain) at the now-closed Evergreen Center in Mattapan.
As Mahay discovered the endless possibilities of her own second life, she said she saw a lot of potential for people in the center to participate. "This group has deficits by most people's interpretations," Mahay said, "but they have been able to reach out and touch the world."
Micah Johnson of Dorchester makes up one-ninth of Wilde. Confined to a wheelchair, he finds it hard to express himself in real life, but "in-world" (in Second Life), he has a chance to act out things that are otherwise impossible for him to do.
"It's a chance to be someone in another world that you can't be in this world," he said.
The nine members of Wilde Cunningham have severe physical disabilities but full mental capacities, though they often have difficulty expressing themselves. Operating as a single avatar in Second Life, they come to a group consensus on what to do and say in-world. They require an aid to help them use the computer, which was Mahay's role with the group until she moved to California two years ago.
Since then, Wilde's multiple controllers have struggled to stay in-world. Their move to Bay Cove after the closing of Evergreen Center saw some "birthing pangs" bringing Second Life into the program, Mahay said. Now, problems with staff retention at Bay Cove's day program affects the center's ability to offer Second Life, Mahay said, noting that Wilde has been offline for about three weeks as they look for a new "mascot," to run the computer and take them in-world.
Nevertheless, Wilde has left its mark on Second Life and its ability to raise awareness about cerebral palsy. Second Life is now partnering with tens of thousands of people with disabilities, Mahay said, which was the group's initial mission.
"They wanted to get the word out that all people are the same," Mahay said, "that there's more to just looking weird or sounding weird or society not knowing what to do with them."
John Lester, Boston operations director for Linden Labs, the creator of Second Life, said Wilde is a celebrity of sorts in the virtual world. They have inspired others with their story. "They open people's eyes to how Second Life can be used by all kinds of people facing challenges in the world," Lester said, "how to make them more connected with the world at large."
Wilde has created an island in Second Life where they express themselves through writing, buildings, gardens, and other works of art. Even when they're not online, people can visit their island and see what they've left of themselves there.
They write note cards that they share with other Second Life residents - one that was shared with Wagner James Au, author of the book "The Making of Second Life," explains what cerebral palsy is and goes on to list the following misconceptions about people who have the disease: "that they are not intelligent, that they are happy to be ignored, that they lack humor, that they don't mind the total dependency, that their common sense, humor, insights don't surpass yours at times."
Other members of Wilde have written poems, jokes, or dreams on the note cards. They talk about their frustrations not being able to communicate with others or being judged solely on their appearances. A poem by Mary, who has a facial deformity and trouble speaking, begins: "I'm trapped, I'm trapped but so are you what do you see when you look at me? Can you tell I have a soul? Do you see only my body? Do you think I am less whole?"
A note posted by the Wilde collective discusses the injustices they have suffered because of their disabilities. "Most of us, if not all of us, have had things stolen from us, because we are disabled," they wrote. "Many of us, if not all of us have been slapped or abused physically, and several times all of us have been verbally abused - a lot! Which hurts by the way!!" Later, the group writes, "perhaps the greatest pain when our dignity has been taken, stolen. Our humanity, feelings, kicked around and abused."
Rep. Edward Markey, chairman of the House Subcommittee on Telecommunications and the Internet, led the first congressional hearing ever to take place in an online virtual world on April 1. Wilde Cunningham was invited to attend the hearing in Second Life, and was introduced by Markey as "an inspirational group of individuals" who are "using their avatar to run, fly, and communicate with people in a whole new way. This is a prime example of how virtual worlds can empower and animate the lives of individuals with disabilities through the use of broadband technologies," Markey said.
Second Life has given the nine souls of Wilde a new chance at life, Mahay said and "when they end up changing their own lives they end up changing the lives around them."