BWI part2C
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By Debbie Gleason (CCAL30) (2527), Sun, 06 Feb 2005 09:52:00 PST Comment feedback score: 0 +|- (net 0 from me) Thanks, Pam. There may be a lot of Mary and Annies out there, but they have not yet made themselves known to me. singing Hurry nanny, many thanks from... De-bra Glea-son. Ummm, doesn't scan quite so well. Thanks, Pam.
By Tom Munnecke (1530), Sun, 06 Feb 2005 11:23:12 PST Comment feedback score: 0 +|- (net 0 from me) Debbie, I didn't realize that this conversation hit so close to home...let's hope that good things come. Live2Give has an entire island available for development, with only a tiny portion active... (surpressing island envy) Maybe they would have room for caregivers as well. One idea would be to create an inworld wheelchair, so that non-disabled folks could sit in it and see what it is like to be so constrained. Perhaps with Wilde folks could then push the wheelchair around and flip the caretaker/CP person relationship, talking about what its like. For a little less serious stuff: I've written my first script in Second Life. Her name is Eliza, the Giant Pink Flamingo, and she's standing near the hot tub on Kitto's property. I'm warning you all: BE VERY CAREFUL if you click on her leg. I have hopes of animating her further to carry on Rogerian psychotherapy, as well as uttering phrases (a Chomskybot) that are so profound that you can't understand them. This is all in keeping the the values of the Better World Island, although I am not sure how. I've also placed a prototype of the Peace Pole by the Hot Tub, but could use some help with the textures to put on it.
By c•a•r•l•a (white) (1330), Sun, 06 Feb 2005 11:26:23 PST Comment feedback score: 0 +|- (net 0 from me) wow, thank you all for sharing. tom, pam, the poems, debbie, your struggles, i wish i knew someone.... where do you live? (you can pm me) i may know of someone. I will pray for you!
By Debbie Gleason (CCAL30) (2527), Sun, 06 Feb 2005 12:15:10 PST Comment feedback score: 1 (*) +|- (net 0 from me) Tom, Among other things, I have been periodically blogging about life as a caregiver. One idea would be to create an inworld wheelchair, so that non-disabled folks could sit in it and see what it is like to be so constrained. Perhaps with Wilde folks could then push the wheelchair around and flip the caretaker/CP person relationship, talking about what its like. That would be very interesting. I do often find myself thinking about things like, how does one bend a finger? How would you teach someone how to hold a pen or pencil? We take so much of this for granted. Maura has to learn all of this in a way that most of the rest of us don't have to. Through our buddy Ed, who does a combination of Hawaiian energetics and cranial sacral therapy, Maura's brain is slowly forming new pathways around the scarred areas. It's a very arduous process. She's been seeing him since before she was two. She will be turning nine in April. You all would love Maura's therapists. Each of them are uplifting individuals. Maura's yoga instructor is a woman from Brazil who approaches her with a great deal of patience, humor and respect. What individuals like Maura need more than anything else is a recognition that they are whole human beings. They are people who have flaws and who have good qualities just like anyone else. They can get mad and express it loudly. They love. They laugh. I have a pretty good idea what it's like for Maura because I have developed a very deep intuition over the years since her birth. Actually, you would experience as confined, but this is all that Maura knows. She wants to be ablebodied. We see her determination. But she doesn't miss it, per se. Carla, We're in Chicago. I appreciate all prayers.
By Niny Khor (1415), Sun, 06 Feb 2005 14:46:44 PST Comment feedback score: 0 +|- (net 0 from me) Debbie - did you log onto Second Life too? I stumbled upon this thread yesterday and finally installed Second Life... and it promptly crashed my laptop :( Apparently my video card is not supported, so can't join you guys on BWI for a while (probably good idea for productivity elsewhere). But found some interesting tidbits which you might or might not have stumbled upon there's an in-world journalist Wagner James Au who keeps a blog. Here's his interview with the 9 Wilde Souls From the SecondLife in Press: an actual interview (with photos) in BostonHerald with June-Marie Mahay of Roslindale - aka Lilone Sandgrain. Sounded like the care center where the Wilde Souls live only have one computer, which had to be seriously upgraded before they could access Second Life. Seems like they might enjoy having a second one .. ?
By Debbie Gleason (CCAL30) (2527), Sun, 06 Feb 2005 15:21:01 PST
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No, Niny. Haven't been there.
I wish there was a way to bookmark posts, because I would bookmark yours for future reference.
Yes, I bet they would enjoy a second computer.
By Therese Fitzpatrick (117), Sun, 06 Feb 2005 15:30:50 PST
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Gerry Gleason said:
Is there a way to drop 'wilde cunningham' a line without entering Second Life?
Maybe someone in SL and in this thread could stop 'wilde cunningham' a line for your Gerry? I would do it but I haven't figured out how to communicate in there, not yet.
Thanks, Pam and Tom, for pointing out 'wilde cunninham'. What you have shared is very moving. I wonder if someone can choose to have their avatar be, for example, a quadriplegic?
By Therese Fitzpatrick (117), Sun, 06 Feb 2005 15:51:43 PST Edited: Sun, 06 Feb 2005 16:15:20 PST Comment feedback score: 0 +|- (net 0 from me) When my now-adult daughter was six, I became good friends with a woman with severe physical limitations who could get around in her electric wheel chair. She was a deformed dwarf with an extremely rare genetic disorder. Cheryl is now deceased but she lived to be 36. She could move her hands and, thus, her wheelchair but she had to be lifted in and out of the chair, in and out of bed, in and out of shower. My daughter had a deep, important and instantaneous connection with Cheryl. I was a single mom and my work took me out many evenings as I lead workshops. Evening babysitters were a chronic, ongoing need. One day, I asked Cheryl if she wanted to babysit. At first, she shyly declined. So I pressed her for a moment and she quickly agreed. Having Cheryl babysit meant that Cheryl and her private care attendant babysat. Cheryl's live in attendant was a young man with multiple scherolsis who acted as Cheryl's arms and legs but Tim was too spastic to drive. Cheryl could drive: she had a customized van with a six inch steering wheel. I might be taking too long with this comment, which is off topic, but it feels like it belongs here. Cheryl and Tim had never thought that they could take care of a child. It still moves me to tears to remember the explosive joy in which they took care of my Katie. They immediately started designing outings for Katie all over town, taking her to the zoo and the children's museum and pizza joints and Mcdonald's. . . all the things that people who care for kids do with kids. They wouldn't let me pay for Katie, they certainly wouldn't let me pay babysitting fees. They loved me so much for 'letting' them take care of my daughter. I don't think they ever quite realized what an unbelievable gift they gave Katie and me. I facilitated a lot of good experiences for my daughter as I raised her but I am pretty sure that 'hiring' Cheryl to babysit was one of the most important ones. I felt like all of us moved in a sacred bubble as we seeded love, joy and nurture back and forth and into the cosmos. Cheryl and Tim did not need to be physically whole to care for Katie. They needed to have an adult mind, which they did, of course, to watch over her in the event she had a need. It might not work so well with a helpless infant but at age 6, Katie could dial 911. . . she just needed an adult to make sure she did.
By Debbie Gleason (CCAL30) (2527), Sun, 06 Feb 2005 16:43:43 PST Comment feedback score: 0 +|- (net 0 from me) Thanks for posting that, Therese. Gerry has a cousin who has been living with a woman who is confined to wheelchair. Many years ago, this woman lost the use of her legs in an accident. She babysits. The extended family bring their kids over to their apartment and she does a marvelous job with them. Funny how people assume that disabled people cannot do anything. Even the man who is my contact at the advocacy group recently admitted to me that he was surprised when a friend's nonverbal son could "talk" using a communication device. Even though his own son is handicapped, his son is verbal while this young man is not. And so he had made assumptions about this other kid's intelligence. Being bereft of speech is particularly problematic in our society. Sorry. Perhaps I should create another thread for this? I don't mean to derail this.
By P (CCAL30) (1370), Sun, 06 Feb 2005 18:54:38 PST
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Hi, I am in early conversations with Lilone (her SL name) to see what technology they could use. I told her to email me a "wish list." This type of game/environments seems so have so much untapped potential. I think they deserve an upgrade and more than one computer!
It is a good discussion. Ok to start a new thread. Debbie, this is what I like so much about omidyar.net. One conversation starts several new, really interesting ones, often leading to action.
By Debbie Gleason (CCAL30) (2527), Sun, 06 Feb 2005 19:33:21 PST
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Gosh, Pam, I wouldn't even know where to start it. I hadn't intended to be this open about our situation, really. I think I might and then link back here when I've decided.
I think it'd be wonderful if those folks could get new computers.
By Tom Munnecke (1530), Sun, 06 Feb 2005 20:01:17 PST
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I was also thinking about making them better world scouts, giving them the opportunity to draw attention to the better world opportunities they see. This seems like it would give them a positive outlet for their activities and experience.
re: an avatar a quadrapeligic... i think you could animate an avatar that way, it would take some scripting and animation skills, though.
By Therese Fitzpatrick (117), Sun, 06 Feb 2005 20:24:46 PST Edited: Sun, 06 Feb 2005 20:26:46 PST Comment feedback score: 0 +|- (net 0 from me) I learned so much from Cheryl and the many disabled people who came into my work because of her magnetism. I learned to look at disabled people. Most people treated Cheryl like a child because they didn't really look at her, I guess: they just sized up small person, small mind or something. I learned to ask questions (kindly, of course) if I had questions about their disability. Cheryl and our other disabled friends said they would much rather be asked about their disability than be ignored because someone felt uncertain how to act or help. It sounds like you are doing this, Pam, asking questions so you can understand what help is needed. . . in doing so, you will also simply understand them. Disabled people need to be 'seen' just like the rest of us and I bet the more severely the physical disability, the less they are seen. How cool that you found a group of them in SL, guys.
By Therese Fitzpatrick (117), Sun, 06 Feb 2005 20:28:52 PST Comment feedback score: 0 +|- (net 0 from me) I am not very adept in SL, yet, can I ask a question? Can you, Pam, create technology for use by disabled people in SL through programming? I know you can help people get technology in the physical world, too, I am not dismissing that kind of help. I am trying to understand the potential to create in SL.
By Cynthia Gentry (CCAL30) (1880), Sun, 06 Feb 2005 20:41:56 PST Comment feedback score: 0 +|- (net 0 from me) This discussion is amazing. Thank you everyone for being so open. Wow.
By P (CCAL30) (1370), Sun, 06 Feb 2005 20:49:07 PST
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Hi Therese, I am not sure what you mean.
Something like this: In video games, you can set controls and the difficulty of the game to easy, normal, hard, for example. So someone with less fine motor coordination might set the controls to easy so it automatically fires at the target, even if you are not aiming correctly.
Hey, I am in SL now, hanging out in the BW space in the hottub with wine... where is everyone?
By Niny Khor (1415), Mon, 07 Feb 2005 08:45:17 PST
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Hm.. My laptop crashed yet again when I tried SL - i think no SL for me yet.. :)
PS: All those Pinot fans out there: have you guys watched Sideways?! It's by Alexander Payne - who also made Election, About Schmidt.
By Darlene Charneco (CCAL30) (594), Mon, 07 Feb 2005 09:57:41 PST
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The computer I've been borrowing to log onto SL has been crashing a lot too. A few times per session!*sigh* I've been in denial but It's just too much for the system. And this (my own ancient laptop) could Never support it. I really need a new computer. blah.:(
By Tom Munnecke (1530), Mon, 07 Feb 2005 11:06:31 PST Comment feedback score: 4 (* * * *) +|- (net 0 from me) Tortoise: Just in case you all think that I've been ignoring the events in the Tsunami, Darlene just pointed this out: Tortoise adopts baby hippo
A baby hippopotamus, swept into the Indian Ocean by the tsunami, is finally coming out of his shell thanks to the love of a 120-year-old tortoise. Owen, a 300kg, one-year-old hippo, was swept down the Sabaki River, into the ocean and then back to shore when the giant waves struck the Kenyan coast. The dehydrated hippo was found by wildlife rangers and taken to the Haller Park animal facility in the port city of Mombasa. Pining for his lost mother, Owen quickly befriended a giant male Aldabran tortoise named Mzee - Swahili for "old man". "When we released Owen into the enclosure, he lumbered to the tortoise which has a dark grey colour similar to grown up hippos," Sabine Baer, rehabilitation and ecosystems manager at the park, told Reuters on Thursday. Haller Park ecologist Paula Kahumbu said the pair were now inseparable. "After it was swept and lost its mother, the hippo was traumatised. It had to look for something to be a surrogate mother. Fortunately, it landed on the tortoise and established a strong bond. They swim, eat and sleep together," the ecologist added. "The hippo follows the tortoise exactly the way it follows its mother. If somebody approaches the tortoise, the hippo becomes aggressive, as if protecting its biological mother," Kahumbu added. "The hippo was left at a very tender age. Hippos are social animals that like to stay with their mothers for four years." She said the hippo's chances of survival in another herd were very slim, predicting that a dominant male would have killed him. Officials are hopeful Owen will befriend a female hippo called Cleo, also a resident at the park.
By Niny Khor (1415), Mon, 07 Feb 2005 11:36:39 PST
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Hm. Looks like one of the Wilde's here - John Stone aka eyeclectic? :)
By John Lester (22), Mon, 07 Feb 2005 16:52:15 PST
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Fascinating thread. I signed up here at omidyar.net in December, but haven't been following things lately. Working to rectify that. :)
I guess I'll first introduce myself, though most of this stuff is in my user profile.
I'm the President of BrainTalk Communities, a non-profit organization that hosts the largest and oldest online community of patients and caregivers helping each other deal with neurological illness. (http://www.braintalk.org) We have about 26,000 members regularly posting, and about 200,000 regular readers. I've been doing this since 1993, and recently have expanded to explore and support the use of virtual worlds in Second Life to help patients dealing with Asperger's Syndrome, Autism, and Cerebral Palsy. My "day job" is working at Massachusetts General Hospital, and you can find more about me than you'd probably ever wanted to know at http://neuro-www.mgh.harvard.edu/me.html.
I met June-Marie Mahay during my explorations of Second Life, and immediately was blown away with her work with the group "Wilde." We've teamed up to expand the vision of helping empower people with cerebral palsy and similar conditions, and have been developing the private island "Live2Give." It's still in the formative stage, but it's growing. We'd like to involve other people around the country in Live2Give, to allow people dealing with cerebal palsy and similar conditions to meet other people in similar situations, and to help raise awareness in general about disabilities.
I have a couple blog sites about my work with Braintalk in virtual worlds:
Project Brigadoon - An innovative online community for people dealing with Asperger's Syndrome and Autism. http://braintalk.blogs.com/brigadoon/
Project Live2Give - An innovative online community for people dealing with Cerebral Palsy and similar conditions. http://braintalk.blogs.com/live2give/
On each of those blogs, please click on the "click here for an introduction" link at the top for a summary of each projects. There's a bit to read, so you may want to make some popcorn first and settle in for a while. :)
I'm inspired by all the ideas I see floating around here. I think the trick is to keep a vision of the long-term future, yet work to make immediate changes that are tangible and achievable. That's what June-Marie and I have done with Live2Give, and what I've always tried to do with Braintalk. Dream dreams, aye, but be sure to live them.
On a side note, I saw the post about caregiver support in these online communities. That is a critical issue, and one that we've always embraced with Braintalk (our motto is "support for patients and caregivers"). The people who are caregivers walk a long and difficult path, often just as difficult as the path that patients walk. Supporting them is a priority, because by supporting them we ultimately help the people directly dealing with disabilities and healthcare struggles. I'm glad I saw that point brought up.
If anyone needs to contact me, my email is john.e.lester@gmail.com. I believe June-Marie recently signed up for an account here, so I hope she chimes in soon!
Take care, -John
By John Lester (22), Mon, 07 Feb 2005 16:55:16 PST
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Doh...forgot to mention. My Second Life name is "John Prototype." Please look me up inworld if you wish.
By c•a•r•l•a (white) (1330), Mon, 07 Feb 2005 16:58:25 PST
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THank you John for your thoughtful and informative post... when i get there i will look you up.
i like your thoughts about the caregivers... they are so often overlooked...
thanks again.
By P (CCAL30) (1370), Mon, 07 Feb 2005 16:58:49 PST
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Welcome John! Been meaning to contact you.. so happy we can have this dialog for everyone to hear. I find the work you do to be incredibly important and totally untapped into where it could go. Limitless potential!
I have spoken to folks at HopeLab (www.hopelab.org) and they are excited too but are totally buried in work at the moment. In the meantime, I hope I can continue to learn from you and June-Marie and all the Wildes out there.
I am Jamie Neutra on Second Life... I try to only go on after the kids are in bed. For a while, I was logging on in the morning and my daughter was getting to preschool really late. ;-)
Peace, P
By John Lester (22), Mon, 07 Feb 2005 17:30:10 PST
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Nice to meet you, Pam. I've followed a bit of what HopeLab is doing from their website and papers. It sounds wonderful and very innovative for kids. Great stuff!
I sent you an IM in Second Life just saying hello. Please look me up inworld.
Also, if anyone needs to reach me outside of Second Life, I use AOL Instant Messenger all the time. My name on AIM is DangerJohn3.
