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can you know??

can you know the difference your comments make as they are read so many times??  as they are bathed in??  i wish you could!

all are lil
all are big
together we are strong~

Posted by group mascot on March 30, 2005 at 08:52 PM in Mascot's Musings | Permalink | Comments (3) | TrackBack

draft one on caring

micah, john g, nichole, danny, scott, mary, and johanna

this is draft one of a composition/poem?  we wanta do for here.  people all the time wanta see some of the process.  here's draft one.

brainstorming thoughts on caregivers

being able to feel the care
taking the time to listen
getting extra projects we enjoy
spending time
nice
shows respect
supports dignity
trys to cheer us up
or find out what we are happy about
talks to us
cares about the US in us
being included
asked for our opinion
do fun things with us
make us laugh
help with practical needs caringly
quietly hang with us
sometimes have coffee with us
share some of yourself with us
know we all are the same


Posted by group mascot on March 29, 2005 at 06:16 PM in group writings | Permalink | Comments (3) | TrackBack

being strong can take a lot of strength

anonymous wilde

being strong can take a lot of strength sometimes.  i'm a bit weary from being strong so long.  at least i know things will be changeing soon.  i will try my very best to hang in there and believe things will get better.

i feel so mistreated.  i live in a group home where the staff has recently turned over.  we have new staff who dont do nearly as good nor as caring a job with me.  i am in a stationary manual chair.  that means i cant move about unless someone moves me.  i'm also non verbal for the most part, but i can say a few words like yes no and ty pretty clearly.   i'm so sad over whats going on, its rather hard to write about.  but i have to.   i have to tell people!

today i shared with the rest of the wildes whats been going on at home.  it was hard to share.  i havent been treated very kindly and am being yelled at nearly everyday.  i'm not even sure what the reason is i'm being yelled at.  i always try hard to do what i'm asked to do.  my food is being fed to me in unsafe ways and is too hot for me to eat.  it burns my mouth.  and i'm scared i might choke from the way i'm being fed.  i'm being showered in too hot of a water temperature and when i ask them to cool it down they just dont understand.  they think the water splash is bothering me, but its too hot!!  i'm regularly being put to bed much later than i like/need.  i'm having to wear unclean clothes and even other roommates clothes.  i want to wear my own clean clothes!!   i feel like i'm left alone for long periods of time, and no one asks my opinions anymore.  when i am clothed or moved from my chair to my bed i am handled too roughly.  it hurts!!   it just feels so horrid!

this past week i was cut during shaving by someone.  they arent supposed to use regular blades on my face because its hard for me to keep still always.  i cant help it. so i have an electric razor.  but they arent using it.   this past week someone took a chunk off my nose that bled for over an hour.  it was still bleeding 20 min after i got to the program even with pressure and ice on it. 

finally someone asked me the right questions to find out just how bad things have been getting.  i was a little afraid because sometimes when you get someone in trouble your not always treated better.  it was scary.   my family knows.  my dmr service coordinator knows.  reports have been filed with dppc.  they are gonna move me out.  i want to move out.  i just cant take anymore.  i try so hard to be good and understanding and patient with people.  i'm relieved its out in the open now.  i'm so glad my peers know because they could support me having been through simular things.  moving out wont happen overnight.  i love my roommates very much and it will be hard to leave them.  it will take a lot of strength to be so strong.   

someone from the program will visit me this weekend just to make sure the staff are being good to me.  they are gonna pretend to come over on sunday too, though we are just tricking my house staff so they will  be ready.  they dont really plan on coming back on sunday.

i want people to know these things happen.  i want people to know so those it happens to wont feel so alone.  i want this to change about the world.  i need it to change for me.  being strong can take a lot of strength.  but we just cant give up!

Posted by group mascot on March 25, 2005 at 07:18 PM in other's writings | Permalink | Comments (6) | TrackBack

some of my favorite writings in this blog

 

johns writing about second life and what it means to him, and why~
http://braintalk.blogs.com/live2give/2005/02/second_life_for.html

johns writing on the big challenge of his lifehttp://braintalk.blogs.com/live2give/2005/02/the_big_challen.html

a group writing on the love of one, anyone
http://braintalk.blogs.com/live2give/2005/01/the_love_of_one.html

a group poem on everyone being the same
http://braintalk.blogs.com/live2give/2005/01/what_do_you_see.html

marys poem on being trapped
http://braintalk.blogs.com/live2give/2005/01/trapped_by_mary.html

scotts poem about his mother
http://braintalk.blogs.com/live2give/2005/01/because_of_you_.html

a group poem called independent dependency
http://braintalk.blogs.com/live2give/2005/01/independent_dep.html

an early group writing on what they like about sl and why
http://braintalk.blogs.com/live2give/2005/01/what_we_like_ab.html

a poem by me about the group and this time
http://braintalk.blogs.com/live2give/2005/02/i_hear_them.html

a writing on communication with non verbal people
http://braintalk.blogs.com/live2give/2005/01/can_you_communi.html

johns write up on a familiar communication experience
http://braintalk.blogs.com/live2give/2005/02/john_s_wanted_y.html

john lesters plaque dedication
http://braintalk.blogs.com/live2give/2005/01/new_dedication_.html

a poem about things wilde teaches me
http://braintalk.blogs.com/live2give/2005/01/lessons_this_li.html

and lastly our mission
http://braintalk.blogs.com/live2give/2005/01/our_live2give_m.html

what are some of your favorite writings?

is there something you are curious about that you'd like to hear more on?

Posted by group mascot on March 20, 2005 at 06:02 PM in Mascot's Musings | Permalink | Comments (0) | TrackBack

copy of an artical from a sl magazine

the below is a copy of an artical i was asked to write for a second life in world magazine.  the group asked me to post it, so here it is~

the one soul of wilde cunningham
by lilone sandgrain

wilde cunningham is a relatively new av to sl, they've only been playing actively since november.  wilde is an extraordinarily unique av for 3 reasons:

1) wilde is played by up to 9 individuals at a time all playing as a group.
2) wilde is comprised of adults in their 20's-70's all with severe disabilities which do not allow them what we would call normal lives.
3) due to these disabilities they do not drive the av themselves but instruct me, their personal mascot and servant girl, on what they want to do, say, build etc.  i am their hands and voice.  or more accurately, their interpreter.

in rl i work with wilde at a day program for adults where i've worked a lil over 3 years.  i've found them to be some of the truest friends of my entire life and accordingly they have my utmost respect, loyality and love. 

while we have 9 regular people who play wilde there are often guest players who join in or watch them sharing their inworld play.  of these 9 people 3 have been diagnosed with a degree of mental retardation, 6 are in wheel chairs, 2 of these have such disabling conditions they are in manual chairs which they can not move, 6 have cerebral palsy or cp, 5 have very severe speech impediments, 2 of those are limited to one or two word replies, another in the group can not speak at all, these 6 with cp can not use their hands, all nine have golden rich hearts with much to share with the world, all 9 of them teach me daily and impart wisdom to me i would not have gained any other way. 

on playing as a group~ 
many residents have wondered how one av can be shared with so many people.  group dynamics can often be so challenging.  everyone soul has its particular strengths and weaknesses, i can say one of wildes strengths is operating as a group.  heres a bit on how we do it.   within the group that i'm entrusted with we have certain ground rules.  they follow us through the course of our day and into every activity which we find ourselves.  some of them are:

  • all have inherant value, accordingly we respect and welcome all.
  • each deserves equality in participation, contribution and communication, regardless of time factors involved.
  • all have something to contribute.  if they chose not to contribute sometimes, thats respected too.
  • all have weaknesses.  we do not focus on anyones weakness
  • if we want our feelings respected, it is our duty to respect our peers even if it differs from ours, the same as if it was ours, in other words our neighbor's problems and input are just as valid as ours.
  • we are better as a team, when all parts contribute what they will and each looks out for the other.  we equal more as a whole than the individual parts added up twice over.

these values are integrated and fostered into all aspects of our lives in the day program, within my group.   its no wonder that they easily carry over into sl.  in rl we do tons of opinion polling and voting.  there are never wrong answers, and often people simply choose the wishes of their peer over their own.   greed kills.  wanting our peers equal success empowers us all.   within these ground rules wilde has blossomed into a very active and powerful voice.

we have offline group meetings regarding sl and the direction we want to go, progress we are making, appointments we'd like to make just about on a daily basis.   this helps bring unity to the group when we drive our lil av about and makes the most of our limited time to play.  they embody the dynamics of a perfectly running ideal group.  much of the world could take an example from them.

there has never been a playing time when we were torn or got upset with each other over what one wanted to do.  we also know that playing sl is a long term thing, and nothing needs to be rushed.  very rarely does one player feel the need to have it their own way, but should they feel that commited to something our group would defer to them in that instance, knowing the same will fall to them in turn.

we read all chat dialogs outloud.   often we play in 2 rows of chairs, occassionally 3.  in a busy area reading chat can be a bit challenging.  its not unusual in such busy areas that we listen more than speak.  for just the listening to so many parts can be tricky.   one to one, or in smaller groups wilde is more active conversationally.   

we follow this temperature checking policy, we all gaze about the room  listening for suggestions or approval of an idea kicked out, some responces are visual and not audio so we may often converse a wee bit slower at times.  however, WE DONT CARE!!  we are having the time of our life and being a part of a communty in ways we never dreamed we'd do!   in rl it would take folk 2-3x longer at least to understand what's being said.  in sl we miss all the draw backs of our speech impediments  and of people being intimidated by our physical appearances.  so while a listener may feel we are taking a bit longer to reply in reality we are cruising along at top notch speeds and loving it~

the experience of second life has brought about many changes in wilde which i would never have expected in the beginning.  i brought them to sl because it had offered so much to me and i figured they'd have a blast.  i'd long been telling them tales of adventures and saw how they ate up every last detail.  what i never anticipated was that once they were in they'd play not merely for the fun but from a sence of duty and mission.   almost as if by magic they were released to share the matters and experiences of their lives.  that was what they most wanted to do.

they began writing like maniacs  composing poems and essays on what its like to be disabled, and how all humanity is alike, regardless of precieved weaknesses, and on some of their deepest struggles.  what was more amazing to us all was how the community within sl began to eat these up and ask for more.   one thing lead to another and they had kiosks of notecards spreadout over the sl map.  the support and community reach out to them was almost more than they could keep up with.

one day during my private at home game play as lilone, i got an im from john prototype.  he'd come across our kiosk in bretton.  as it turned out he had been working for many years on a very simular project bringing people (patients and caregivers) into online environments wherein they could find a sence of community and grow from what each supplied.  he'd set up an island in sl called brigadoon where folks with aspergers (a milder form of autism) could do just that, live and grow together in a safe and friendly space.  having been allowed the privilege of meeting some of the brigadoon residents i can say what he's pioneered there is staggering and very beautiful.   interestingly enough is how i feel more safe there and have a greater sence of belonging than anywhere else in sl.  each resident of brigadoon, despite having to deal with misunderstandings about AS in rl, have embraced sl as a way to help each other help themselves and educate the public.

john and i spent some time inworld discussing wilde, what rl was like for them and how sl was radically empowering them.  since he was in the boston area, as we are, we invited him to spend some rl time with us.  i sieze the opportunity to bring caring folk into wildes rl experience.  john was more than well received.  barely over an hour into his visit with them they were asking repeatedly for him to return.  after he left they wouldnt let up on me to hound him for the same.  heh.  not that i needed to do that, for john too, felt the connection to wilde.   he has since been coming on a bi-weekly basis to share a few hours.  the group is estatic!

it was almost as if the universe had directed john and wilde together.  what they were doing was in sync with his overall mission.  he wanted to help in anyway he could.  he offered to set them up with a blog to take their inworld writings, and anything else they'd like to share, to the world at large.  in this way they could open up a new support network for others with simular extreme challenges or perhaps their caregivers or family members. 

he also offered to help with the purchase of an island for the same above purpose.  he offered to pay the initial set up fees and cover the land tier for the first few months till wilde could cover their own expenses.   his generosity stuned us.  even more stunning was the fact that he was willing to become a friend.  to lock arms and walk a spell with us.   its rare to find someone like minded.   i consider it a gift to find a partner and friend as trustworthy as he is. 

no one was sure at first how to digest all this, but we knew it was a good thing.  wilde wanted nothing more than to reach out and share, to make the world better for their peers and to let the whole planet know we were all the same.   we have this saying in our group, 'we are not our bodies, nor are we are weaknesses'.

the blog and the island have both been set up as of Jan 05.  while they are both in the early stages of development there is much anticipation for where the future will take us.   wilde wants others to come and experience the same triumphs and empowerment.  the sl enviornment offers a unique freedom for people with gross imparments that cant be found in the real world,  an equal playing field of sorts.

on the live2give island responisibilities have been divied up according to the individual interests within wilde.  2 are responsible for landscaping, 1 for a future market area, 1 for an underwater development, 1 for the notecard dispensing area, and 2 for island humor.  the others at this time dont want an area of responsibility, but prefer to watch and enjoy the process--  which is fully supported.  one doesnt have to have responsibility to make a difference, nor to be in the limelight to have equal importance or value.   what a blast they are having in realizing what they see in their minds eye.  we are keeping portions of the island open for those who will come in the future to have space.  a full set up of notecard dispensors has been placed near the welcome area for all to share.  its an open island all are welcome!

there are many areas sl has enhanced wilde cunningham.  there are many more ways yet ahead undiscovered. they are eager for the world, as newly released captives into a free world.  please take some time to visit their island  live2give  or read their blog at http://braintalk.blogs.com/live2give.  i'd also strongly recommend checking out john's tremendous work at http://braintalk.org  or his brigadoon blog at http://braintalk.blogs.com/brigadoon.     both of us welcome inworld im's or the chance to shine the spotlight on our exceptional group of friends.  until then, enjoy your second life~  be all you can be, all the many yous of you!  take a lesson from wilde, you are not your weaknesses.  each has something they can give!

Posted by group mascot on March 17, 2005 at 07:12 PM in Mascot's Musings | Permalink | Comments (0) | TrackBack

fun times

Upcoming_wedding_2_1baccara rhodes has been a dear friend to us.  here we are sneaking a dance in her wedding ball room a week before the wedding.  shhhh  just dont tell mash!

Chicken_heads_2moon, gywneth and ourselves wearing the chicken head which causes you to dance and cluck.  my how we laughed that day!
Kage_snow_ball_fightclobbering kage w/ snowballs from the snowball shooter. kage is our friend of fun~

Hell_gates
hells gates.  they say its easy to go to hell. we had to work so hard to find it, laughing the whole time we did.  it can be quite hard to get to hell.  but once we finally did get in, we had a riot it was so much fun! 
Lil_pilot
another time out with kage.  poor him!  the mascot was the worst pilot in the world crashing and getting stuck in houses!  to top it off, baby ruby tossed her cookies all over kage!  wilde laughed for days on this adventure! 

Baby_ruby_gets_a_ride baby ruby pulling the monkeys tail.  bad baby ruby, bad!

Jedis_of_love
sh sh sh shopping!!!  we got this wicked kewl light saber with sound effects.  then we stood in this dark hearted room declaring, " we are the new jedi's of love!"

Hamlet our meeting with hamlet for when he did the "9 souls of wilde cunningham" artical in the new world notes, at our first  kiosk in bretton.


Wilde_john_errol_4
john, tim guest, and wilde having our first inworld interview together.  later all of us met in rl.   soon many will hear our stories and know share our joy  how much better real life is for us having discovered second life!

March_switch_back_to_male
up in our office trying make our 2 month switch back to male.  haha  as you can see there are always stages in change, even if you know where you are going!  we have soooo much fun with sl.  sl rocks~   bring it on!  lets change the world, even if in clunky stages.

Posted by group mascot on March 12, 2005 at 09:23 AM in Mascot's Musings | Permalink | Comments (1) | TrackBack

pix of the island

Welcome_area this is our welcome area.

Tropical_lifejohn s loves fish.  this is his coral reef  below the coral reef is a secret chamber filled with john's imaginative goodies.
Notecard_area
this is the crystal garden notecard area.  wilde's most popular writings live here to be shared.
Human_rights_lookouthuman rights trail culminates at human rights peek.  here a new pix flashes to remind us all deserve equal good.

Mermaid_poolcharlenes mermaid pool.  she's designed it to be mostly moms with kids and has named each of them carefully.
Wilde_riding_johns_seahorse
here they ride john s's sea horse

Our_office
our office in the sky where we can entertain
or im quietly

Wilde_wishing_star_beachwishing star beach.  the starfish contain special wishes

Water_swinghave you ever used a swing over water?  know what happens when you jump off?  splash!  you get to see the sea monkeys!

Jacouzi
mmmmm  our island jacouzzi.  this lives in an underwater home built for a non wilde live2give island resident. 

Wildes_dreaming_raft
our raft to dream upon floats in the bay.  there you'll also find baby moses floating in a basket with the question, 'what if no one had saved him?'
Tire_swing our tire swing while sails amidst birds and butterflies.

Our_drumsthe island drum circle.  click on a drum and play your cares away!  or if you feel more like dancing, click the drum in the center and dance to anothers beat!
Playing_our_drum
drumming away the night, calling forth to usher in a new day

Dolphins
it was hard for baby ruby not to get sea sick as she sailed on our back around the island.  but at least the dolphins made her laugh!

Posted by group mascot on March 12, 2005 at 08:46 AM in Mascot's Musings | Permalink | Comments (1) | TrackBack

how we cope. a message of hope.

how we cope
a message of hope
composed by all the wildes

when we are asked to share about ourselves, one of the first things that comes to mind is the unusual set of challenges we face and the tole they can take upon us.  we face things on a daily and frequent basis that would crumble the strong in the non-disabled world.  we dont want to over emphasis, but spotlighting might be helpful.

below is a copy of what the mascot put in another forum on thursday of this week.  it describes as an overview without crushing the readers.  our comments on coping with these things will follow.

we discussed yesterday what might go onto the blog next. what i got from them was a list of challenges. they wanted to discuss such things as what it feels like to talk and never be understood, or the strain and tole that takes on them. one wanted to talk about how they feel at high risk very often for personal safety. that person has had their elevator down and been trapped for weeks in their home. the entire group wanted their wheelchairs discussed.... how when they are broken they can be bed ridden as well as trapped inside. one gentleman had his chair out of commision for 6 weeks because the repair people were so backed up. others raised their voices about what happens when their home care staff doesnt show up. a member shared how she was left in bed till the next day when someone finally showed up. she said she was hungry and needed hygiene cares attended to. what message does this send them? can you feel their dignity and self worth/value assaulted? the list of challenges grew the longer we discussed them. i sat there befuddled wondering how to turn this into blog material.

after we discussed what trampled us to the ground so effectively we highlighted how we get through such difficult things. we singled out some keys that become survival tools. while they want to proclaim these things to the world, they also want to use them as tools to inspire and encourage those in harsh situations who also may be tempted to give up hope.

depending on which one of us is sharing our coping skills look a lil different.  one of us shoots hoops or plays playstation, another goes to her room and surrounds herself with her fav things.  some of us talk to friends just to share how difficult the challenge may be, not that there will be answers. some, but not all of us, pray.  some use relaxation exercises, or listen to favorite music.  we all try to remember they wont last forever.  we try to let them blow past us like the wind as best we can.  like the wind we will feel them, it may chill us, but it blows past eventually.  finding someone to laugh with or at helps.  we discussed that the best thing we can do is look to the tomorrows when we are discouraged.

mary's chair broke as she left the program yesterday facing a weekend in a broken chair and the threat of it not being repaired for some time.  there was nothing that could be done.  there was no one to answer the phones for repair service.  sometimes theres  no way out but through.   while our challenges may be different, and often hard to resolve, the tomorrow always comes. 

we look to the future and call for it to come.  when theres nothing left to hold to, we hold onto that!

Posted by group mascot on March 11, 2005 at 10:37 AM in group writings | Permalink | Comments (1) | TrackBack

feelings of safe and unsafe

we were recently asked in another forum what made us feel safe and what particularly  second life added to such feelings.

as a group we discussed safety and things that make us feel unsafe.  after three sessions of group discussions we offer the following.

things that make us feel unsafe
lack of predictablity
being left alone too long
being in a room with closed doors and no staff
not being understood
staff shortages
people who work with us and dont know us
not being properly in our chairs
being in a strange unknown environment
not being able to ask important questions
someone helping us eat who doesnt know how

things that help us feel safe
being in a comfortable known environment
friends
routines
being empowered
having our wishes understood and supported
feeling free of risk
knowing someone has our backs
physical closeness to those we trust
reassuring touch
basically an inverse of all that makes us feel unsafe

our second life and why it feels so secure
(modified from another forum)

our island is symbolic for all this season holds for us. its the virtual/visual representaion of our hopes, dreams, and future. its our brighter tomorrow.  its the brighter tomorrow for others like us who will come.

its our welcomed wanted valued corner of the world. where we go from the feeling of 'no power' to 'very empowered'. it is the ablity to be seen, matter, and feel real.   all that confines us in the real world is temporarily vaporized.  it goes 'poof'  as john s would say. 

for more on what sl offers to us read john s's writing 'second life for the world'.

Posted by group mascot on March 11, 2005 at 10:09 AM in group writings | Permalink | Comments (1) | TrackBack

easter jokes

collected by micah

why was the easter bunny so upset?
he was having a bad hare day~

what kind of books do easter bunny's like?
ones with hoppy endings~

why shouldnt you tell an easter egg a good joke?
it might crack up~

why does the easter bunny always look so good?
he uses hare spray~

what did one colored egg say to the other?
hear any good yokes lately?

why did the easter egg hide?
he was a lil chicken~

which side of the easter bunny has the most fur?
the outside~

hahaha 
keeeeeep laughing!

Posted by group mascot on March 10, 2005 at 05:58 AM in micah's writings | Permalink | Comments (1) | TrackBack