One avatar, many souls (originally published here.)
When wilde Cunningham gets their Second Life sea legs, they'd like to build a house. They'd also like to build a castle, though not as much as a house, and to a lesser degree, they'd also like to run a store. They all seem to like creating note cards, however, and also love waterfalls. Some of wilde wants to influence the world positively, while at the same time, another part of wilde wants to fly a helicopter and get some guns. Another portion of wilde would like to be a woman; still another, to make money and publish the first part of their life story. More wilde desires: to communicate their thoughts with ease, and to be honest about their challenges.
I finally met wilde Cunningham after days of residents enthusing to me about them, and truth be told, if I hadn’t known their story beforehand, I’d probably never notice them. Because at the moment, wilde is a startling avatar, with their bulky body and their orange skin, and red hair jutting in every direction from their balding head.
But there's a very good reason for wilde's appearance, and also for their name.
"We decided on our name because we have a group at our program which we had to name, some time ago," wilde Cunningham tells me. "We took ideas, and then voted on them, and named ourselves 'the wildes' back then. We have had this name for two years." Cunnigham laughs. "Just too wilde to be normal."
I smile, and they continue: "How did we decide on what we would look like, and our gender? We formed the man avatar first, because that day, we had more men in the group. We always wanted a female one, but we haven't taken the time to create her yet. Mary and Johanna would like that very much. We decided on how wilde would look first by starting with skin colors. We have both black and white in our real life group, and didn't want to have those because neither is better than the other. So we picked orange."
And this is probably a good place to introduce wilde in all their components-- though maybe their friend lilone Sandgraine is the best person to do that here, as she did for me, some days before I actually met them in person, as it were.
The people of wilde Cunningham are severely disabled physically (but not mentally, not at all), and all but one of them are confined to a wheelchair. They owe their Second Life presence (though not their essence) to Ms. Sandgrain. In her first life, she works with the people of wilde at a care center on the East Coast. The idea of getting her clients a Second Life account sort of evolved over time-- she doesn’t remember when it finally hit her, exactly-- spurred on by her own interest in Second Life. (She’s been a resident since March of this year.)
"John’s key," says lilone. "He has veto powers. Mary, the Queen of heart. Micah the Joker. Nichole-- she's shy; she'll hang but not talk to ya, unless she knows ya. Scott-- key player. Charlene sometimes plays-- still learning the game... very shy, but witty like no tomorrow. Danny-- he's cried over Second Life." She also tells me about the other John, also shy, and about Johanna, who like Micah is a practical joker.
"Sure love these guys," lilone finishes. "They are my heroes. Rich treasure chests."
In early December, I got to chat with them in person, near the gift shop lilone helped build for them in the snowy region of Bretton.
"Good to finally meet you, wilde!" I say, when they arrive in-world.
"We feel the same way, Hamlet." wilde answers, and shifts their feet in the snow. Holiday music is streaming over their property-- a Bing Crosby song, a Snoop Dogg Christmas rap, and so on. "We have been looking forward to meeting you," they continue. "As you can see, our typing is even very slow. Sorry."
I tell them they type fine, then ask them how they decide what to say.
"Well," they reply, "members of wilde, together with lilone, toss out ideas and everyone chimes in when they agree, or chose not to answer, which is also OK. Mostly we vote and take group census on things. That’s what we do-- John G., John S., Scott, Mary, Johanna, Danny, and Micah. The others opted out [this time], which is fine too."
"I just shared with them about it," she tells me earlier, about Second Life. "And knew they’d love it. I'd share stories of my activities here. [To] John and Scott mostly. They love to hear such things. John is a hungry sponge. He can't speak as such, [but] he's been to college and overseas. But he can't ask questions easy. Imagine that. So much to know, and no power to ask. He can say 'more' and 'why'. His body won't let the [other] words out."
One response to all the questions they had, even the ones they couldn't ask, would be to just show them all what the world was like, from their own first-person point of view.
But even doing wasn't immediately possible. The care center had its own various concerns about doing this. It took lilone "lots of pulling and tugging," she says, and groans. "Lots of red tape and circles." The center had a computer with broadband, but it couldn't run the Second Life client without some serious hardware upgrades. (But more on that later.)
Then there was the problem of using an interface.
"Micah and Charlene could use the mouse," lilone replies, when I ask her if it's possible for each member of wilde to enter Second Life directly, perhaps with their own individual accounts. "John and Nichole could, but wouldn't alone. Micah can't read. Charlene has one hand, but can read." She shrugs. "None of them, really."
Their solution, for now at least, is lilone effectively acting as their interface: she sits at the keyboard, with the wilde group gathered in a semi-circle in a cramped care center room, peering over her shoulder and into the monitor, at the world inside.
Which is where they are now, while we stand there in the snow outside their gift shop. Wilde tells me about their experience in Second Life thus far (they'd been in-world for nearly a month, when we first chat).
"Some of our favorite people we've met are Toy LaFollette, Angelique LaFollette, Baccara Rhodes, Mash Mandella," wilde says. "As a group, our favorite experiences are watching Toy make waterfalls, meeting new friends, and writing the notecards." In the background, Frank Sinatra's cover of "Come All Ye Faithful" is streaming over Bretton.
Their time in-world is short, and with minutes left before they need to log off, I ask them if they want to fly with me somewhere, for awhile.
"Yes, we can fly," wilde replies, "but following is hard [because of] the lag, but we are willing if you are."
I am. So after a few false starts, wilde Cunningham and I take to the air.
Wilde and I lift off the ground, leaving behind the gift shop where they display their creative wares; the holiday music stream drifts away behind us. Airborne, it’s hard to keep track of wilde-- their computer and their connection from the care center are hardly tiptop-- and for awhile, I'm whirling around, trying to catch sight of them. I've only been in-world with them for just over half an hour, but then, their sessions in the care center are so regimented, they’ll have to leave in some ten minutes or so.
"It takes 15 minutes to set up to play, with all the chairs and such [around the computer]," wilde tells me. "And then the group play is a more times taking endeavor than playing alone. So we get about 45 minutes of playing time per session. We are full of desires of things to do, but all in good time."
What to show people confined to wheelchairs, for whom travel outside their individual capacity is a time-consuming effort in itself, and they now have a only few more minutes to explore?
I take them to the Field of Dreams.
While we teleport there, here are some excerpts from some notecards to read, written by members of wilde, and available from their kiosk in Bretton:
danny would want you to know he's been to washington dc, in the capitol, protested there for the rights of those in nursing homes.... and can he laugh!! he loves to laugh!! and sing! his favorite to sing is 'i'm dreaming of a white christmas...' once we were on a plane together, which was quite the ordeal for him to board having been harassed and then carried and stuck etc. etc.....once we were boarding this plane he began singing this song and the whole crew and passengers stopped... stunned to hear him sing, so passionately from the heart. they were the prisoners of his song, stopped dead in the moment till his song ceased!
["He’s cried over Second Life," lilone tells me of Danny. (lilone helped him write his notecard, hence the third person.) "He has much difficulty speaking and being understood. So having someone help him get his parts into the notecards really moved him strongly. Then also, because this empowers him and frees him. So he's cried over living his dream to communicate."]
[I] have a picture board with primary pictures i strain to point to if that seems easier to get my point accross. i am in my mid 30's... i have much to say. what can a picture board do for me?? pictures are so very very limited!!! still, life would sure suck if i didnt have my picture board! thats an understatement! i depend on my tray. it is almost like a piece of my body.
my mom... i have to talk about my mom. perhaps i will write a whole notecard about her soon… i was born on christmas and she's always delighted i was her christmas baby, but honestly i think she’s just as much my Christmas gift from above as i am hers.
[“Scott’s mom came in-world,” lilone elaborates for me. “She came to see what Scott had done, and because he wanted to gift her with his poem, she cried twice too. She was so proud and sooo happy for her son. It was hard to share with his mom the writing on the challenge of speech--scott was transparent. Such transparent challenges can be hard for a parent to read, but they shared them side by side. It was way kewl.”]
CEREBRAL PALSY – FROM JOHN
What is cerebral palsy?
Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain…
misconceptions about those with cerebral palsy…
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
JOKES BY MICAH
whats the definition of christmas?
the time when everyone gets 'santa' mental
whats red and white and blue at christmas time?
a sad candy cane!
what do you call an elf who steals gift wrap from the rich and gives it to the poor?
a christmas thought
~stressed is just desserts spelled backward~
POEMS BY MARY
i'm trapped i'm trapped but so are you
tho perhaps you see it not
you’re trapped inside fragilities too
your worries make you rot
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?
[“Mary has the wisdom and heart of a saint. She’s very insightful. She’s here, Hamlet.” She directs me to the image of an African-American woman with kind eyes and on her face, a shocking deformity. “See this woman. This is the Mary I know and love... her tongue hangs out without her mission all her life. When she speaks, no one can understand. Even me at times. She’s lived all her life this way. Children cry and run from her-- when her heart is golden. Amazing woman. Truly I can call her my friend.”]
THE WILDE COLLECTIVE ON CRIMES AND INJUSTICES-- MORE THAN OUR SHARE [“Written by all the members of wilde, but namelessly for their protection and greater transparency”]
most of us, if not all of us, have had things stolen from us, because we were disabled
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!!
we've had our money taken from us
perhaps the greatest pain when our dignity has been taken, stolen.
our humanity, feelings, kicked around and abused
control. people take control. they take control of our things, our decisions. they force their will and preferences upon us. no we cant buy that. no we cant eat that. no we have to watch this. no i dont have time now. no you cant go anywhere. no you will be unable to move for awhile. no…
And now wilde Cunningham and I are standing in the Field of Dreams. Somewhere on the East Coast, many pairs of eyes are squinting.
"We can't see it very well," they say, "but from what we can see, it's lovely. We will create a land mark here."
I tell them they're able to change the color of the flowers on this field. "What's the group's favorite flower color?"
There's a brief pause for deliberation. "Most of the group likes roses." And the field around begins to bloom a deep red. But our time remaning in-world is brief, and there's so much more to talk about.
After wilde and I leave the Field of Dreams, we end up hovering below my property in Shipley. "Here, fly up here," I call down to them. "This is my office." They say OK, and add, "Charlene is joining us now... she says Hi, and what's up." They are, as it happens, so I ask them what the experience of flying is like for the group.
"Flying is like watching TV," wilde replies in mid-air. "It's kewl we can do it, but we are still a lil' removed from it."
"How about just walking around in Second Life? That's something they can't do in real life."
There's a brief offline discussion. "A few were fast to say yes," wilde finally replies. "Most of us thought, while it's nice, it’'s still a little removed from us, as we watch it instead of do it. But it’s nice to be able to do what others can do. (John chimes in loudly here. So does the room. It gives us an equal playing field.)"
In Neal Stephenson's Snowcrash, the hero is helped out at one point by a brutally disabled man without legs or arms, who still manages to run a successful technology company from inside his virtual office in the Metaverse. (In the real world, he also drives an automated van which carries his body, via remote control from his office.) He actually pities Stephenson's hero, still tied as he is to his body and its constant needs-- while lucky him, he's free to explore the possibilities of the mind.
In wilde's case, however, the exploration conducted so far is largely in the social realm.
"Some of our favorite people we've met are Toy LaFollete, Angelique LaFollette, Baccara Rhodes, Mash Mandella," wilde tells me. "They have been helpful, fun, very friendly. And Angelique we found the most interesting."
"The community is so moved by them, Hamlet," lilone tells me earlier. I say I'm not surprised.
She laughs. "I'm stunned, and overwhelmed even. In real life, it would never happen that way. Couldn’t get past the real life aspects. Here people ooze over them. Say how they touch them, make them better people for knowing them. Person after person after person."
"Well," I say, "it does make people uncomfortable, even against their best intentions. Being with a disabled person in real life, I mean."
“Yes,” lilone replies. “They know that, too. That’s been a harsh reality all their days. Having so much to offer, give, and share. And not being able. Who has the time anymore? To go beyond themselves.”
Toy LaFollette seems to agree with that assessment. “In Second Life they are on a equal setting and we don’t see the handicaps,” she tells me afterward. “[T]hey all speak openly, never some hidden agenda to watch for… Just the chats [with them] makes one feel the boundless energy…”
Some of that energy has even allowed some of them to manage an in-world activity that most taken for granted.
“Weeeell,” wilde drawls, when I ask, “Micah’s our group flirter. He flirts as often as he can. His favorite was with Angelique. She was very gracious. But. Due to our time constraints and our day program formatting, forming romantic relationships online is not why we are playing.”
Though I could be wrong, I sense I’m speaking more to lilone Sandgrain at this moment-- the woman at the controls, that is, rather than as an embodiment of her wilde clients.
“Would they like to do so eventually,” I press, in a question meant mainly for her, “when they have a better computer and can be on longer? Have romances, I mean?”
“Hamlet,” comes the answer, “I don’t think we can discuss that more right now. Volatile. While we have real life romantic relationships at will, and some currently are in [some], in-world online relationships are a different matter, and not what we plan on using this avatar for…”
There’s a pause, as heads are evidently tallied offline. “The group all feels the same on this. They are all chiming in. Everyone in the group would love to have their own avatars. Not very realistic right now, but it’s a nice thought. We discussed this at length today and shared our dreams.”
* * *
“I first met them when wilde dropped in on our property, while Toy and I were building,” Angelique LaFollette tells me. “They were quite interested in the process.” Ms. LaFollette’s a dark, regal young woman, perhaps of Creole origin. “I am working on a Victorian house, and I showed them the greenhouse I had made…”
“I hear one of them was flirting with you a bit.”
Angelique laughs, then grins broadly. “Micah. He met his match, I think. I'm a shameless flirt myself. Ah, you know how this works, chere. Innocent comments strategically worded. He's quite nice. Nothing that could seem rude. He said outright he thought I was Pretty.” Angelique seems to shrug. “I don't mind. A girl likes to be admired.”
“I wonder if he's ever been able to say that to a girl in real life, and not have her respond negatively.”
Ms. LaFollette nods. I’m meeting with her on her estate, to get her side of Micah’s flirtation. “It is a sad thing these days, chere. A man of any description cannot say such things without risk of negative reaction. Micah is not alone in this...” I suggest that such risks must be even more fraught for someone like him, but Angelique LaFollette's patience for this line of questioning has neared an end.
“Let us be Blunt,” she tells me evenly. "You refer to Micah being termed ‘Special needs’. [If] many women won't look at such a man, I think it is because they cannot see beyond surfaces. Micah flirted, but he wasn't crude. I was receptive, because I also flirt, and because I judge people by their hearts. His seems quite nice.”
She smiles coquetteishly, perched there on a stone bench bedecked with white feathers. "I know many non-special needs men who could take a lesson in how to Flirt from him. He seems a gentleman.”
"Haaaaaaaaaaaaamlet," lilone Sandgrain wails at me, when I tell her I'm talking with Angelique about Micah’s flirtation techniques. "Why? Wwwwwwwwhy would it matter if he flirts in real life? I think most men do, or want to in a way that's theirs."
"Yeah," I observe, "but a man who's disabled risks some pretty awful responses or even facial reactions, I'd imagine."
Before she answers, lilone first describes to me the policies that her care center abide by, regarding romances and the personal lives of their clients. "[N]ow couple that with the risk and often heart breaks with online relationships, I don't think i could find a waiver which covers that. Not one big enough."
So her strong reaction against online romances the previous day seems more understandable now. What's more, several of the wildes aren't necessarily interested in them, to begin with.
"Yeah, we have two people in wilde who are in relationships in real life," she says, then stops and recounts. "No, three. Two of them have been a couple 50 years." (That would be Danny and Johanna.) "One about six months, one has been married and divorced... You could say Scott has a love, too. She recently left the program but is still with us in heart/spirit."
All that said, lilone continues. "When we play in-world during program hours, we won't be focusing on romance, but would safely support it, as best we could. All the members of wilde experience all the same feelings and emotions you and I do. They know shame. Their whole lives, all of them. Disabilities carry shame inherently. Strong shame. They almost always feel shame. Or could at the drop of a pin."
"Yes," I say, chastened. "And that's why I wonder if being able to flirt in Second Life like this is a unique thing for Micah."
"Maybe in the sense that he’s not scolded for it. In real life he'd be scolded. That’s one way Second Life frees him. They miss a lot of the bad things real life has...
"Sorry for the strong reaction," she adds, after a bit. "Guess I was being protective."
Then again, that's understandable too. lilone Sandgrain has been the wildes' interpreter for over three years. Before that, she says, "I had other more managerial-type jobs. When I discovered working with them, I left such things behind. Gave the money up. This was worth my investment of self. Not some never-satisfied boss, even when I was overachieving. Office manager, sales manager, marketing director, that kinda crap. No regrets, even when rent’s due."
She laughs, as if thinking back on her entry into her life’s work. “One day my never-satisfied boss when I was marketing director and pulling in lots of company money; one day he got on my case for smoking a cig on my break. And I said, Mmmmm, no more. Walked out. Same day. Went full-time into this. Their loss. My crew’s gain.”
This brings me to a point I’ve wondered about, while talking and interacting with wilde Cunningham—how much their speech and actions are taken directly from what the members of wilde suggest, and how much of their decisions are actually shaped by lilone Sandgrain, the non-disabled woman at the controls?
“Honestly, before I say stuff,” lilone answers, “or even sometimes as I say stuff, I'm full putty in their hands. I toss out a lot of multiple choices, and others do too. I do interpret some for their sounds or gestures of approval/disapproval, and I gaze about the room constantly. I think they would say that I communicate accurately their wishes/minds in the high 90 [percent]. Some would give it tens. I ask daily on this… it’s my gift. In fact, if I may say so, my boss has told me how no one has had such a gifting with this group ever there, due to their communication challenges. But I think the key is, I know they are much deeper than I give them credit for, and I give them tons [already]. They are deep, you know. Most most deep.”
“You know,” I muse out loud, “I had thought to call any entry I write [on this] something like ‘The Nine Souls of Wilde Cunningham’. But it's actually more like there's ten.”
“Yeah,” lilone Sandgrain responds, “but I'm the mascot, if you’re counting me. That’s all I wanta be. Just the driver. Idea suggester.”
In the coming months, the wildes will learn to make something out of nothing. “I am going to be teaching them to build soon,” Toy LaFollette tells me, “and looking forward to it.”
But the immediate challenge is to improve their access. The care center computer is slow and stuttering, and prevents wilde Cunningham from performing even the most basic Second Life tasks. (Ironically, then, their computer is more disabled then they are.) Several residents have taken it on themselves to help raise funds. In this, they’re greatly helped by all lilone’s related in-world efforts.
To raise funds for the new computer, she says, “Folks just pay their [Second Life] profile. That’s what we have set up now. And 50% of the sales [at lilone’s] gift shop in here I give ‘um… they are about half way to a [new] computer. But there are some here who are passionate about helping them make it. Even before Christmas, I hear.
“But we will see,” lilone Sandgrain finishes. “They learn patience. They have no choice on that.”
After my initial interview with wilde Cunningham, I discover they’ve left a notecard in my inventory:
“The following was not covered in your questioning line but wilde would like included (with loud and strong group approval) the following:
"'As you've been kind to us, in spite of our challenges, so be kind to others in spite of their flaws. Every soul has its disabilities. When you run into someone who makes you feel uncomfortable, remember the golden rule.'"
With their permission, the wildes are depicted in the screenshots and photographs to the right. Photographs taken and generously provided here by lilone Sandgrain.
12/29: Belated thanks to Kim Anubis for being first to tip me on the tale of wilde. - HL