Live2Give

2008 Update

Wilde has been unable to compose on this site for some time but asked that it be left up for people to continue to read and hopefully hear their message. They no longer have a person onsite to help them put their expressions online.  They do, however, continue to play Second Life periodically as someone is available to be their human interface for the computer.  Furthermore, their program location and name has changed from The Evergreen Center in Mattapan MA to Baycove DayHab in Dorchester MA.

The book by Tim Guest called Second Lives was published in the Spring of 2007 in which they are spotlighted in not one but two chapters of his book.  In the Fall of 2007 the CBS Early Show flew out and did a spot on them filming and interviewing them which aired to the masses.   In Spring 2008 they were mentioned in the opening address by Congressman Markey before the entire Congress of the United States.  In addition their work inspired a gentleman in the UK who also had Cerebral Palsy to become an active speaker and travel to other countries doing TV and radio spots for the rights of people with disabilities.   Universities have sought their permission to use these very writings in classes.  As of this posting reporters still contact the mascot to learn more about Wilde.  Something that started off small has turned out to make a big impact on the world.

Please feel free to look through the tabs on the sidebar of this page for specific writings.  There are jewels mixed throughout this blog waiting for you to uncover them.   If you want further information, would like to help Wilde get online more often, or would like to model this project in your own community, please feel free to contact the mascot at [email protected].

This blog helped change Wilde's life~  May it do the same for you!

The Mascot

keeping the faith in the cold dark night

keeping the faith in the cold dark night~

by john s

 

i heard voices in the cold dark night

telling me all was lost

telling me my hopes and dreams were going to fall

again

hard

again

 

i saw shadows in the cold dark night

they lied to me

horrible secrets that couldnt be true

again

alone

again

 

i tasted fear in the cold dark night

filled with torturers

pained torments would swallow me whole

again

hurting

again

 

the dawn rose in the sky

i uncovered my head

as it chased away things of the night

again

surely

again

 

till brightly it warmed my soul

stilled my heart

filled with promises of hopes and of dreams

again

yes surely

again


by john s

the magic carpet

one of the things wilde had waiting for them when they returned to second life was a new magic carpet that takes the rider all over the island and then returns to its home base.  below are some pix we took that they said they 'd like up here. 

flying past the front of charlenes treasure laiden home

flying past the primary kiosk.  people come and check this out every day~ 

wildes writings live in these crystal gardens.  you touch a dispensor and out comes a writing!

.

flying past the tv that flashes pictures of wilde having fun in sl.  this pix here is of their baseball hall of fame which can be found on the island.

another new part of the island is a small park over by starfish beach.  it hosts partical trees and faeries

cruising through what john s calls his sensory room.  its a dark underwater area with wonderful visual effects

.

a glimpse of human rights peak which hosts a flower garden dedicated to micah's mom.

below human rights peak is a grove of trees where the animals love to play

coming in for landing as we cross over the freebie area

april fools!!

a journal entry for april fools day!
by all the wildes

what a wonderful funderful laughter filled day....  we'd talked about april fool's day  ever since the LAST april fool's day!!  we'd planned and promised.. schemed and smiled...  it was gonna be fun!

karen, our picture perfect grp leader, conspired with johanna about getting ruby, our other much loved group leader.  poor ruby!!  johanna hid in the kitchen while karen told ruby that johanna had left to her brothers in florida while ruby was away.  johanna stayed tucked away.  ruby was very distraught!  a lil bit later she went into the kitchen and found johanna there and they all shouted april fools!  everyone laughed!  we'll talk about that one for sometime to come.

mary met the mascot first thing in the morning.  she was trying to get my attention and putting some effort into telling me i had a spot on my forehead... or the like.   knowing how wild my hair is from rebellious curls i thought i musta had a fuzz ball in there or some other gawd aweful thing...  she blurted out april fool's--- she TOTALLY  got me!   first thing in the morning... sheesh.  i thought i was prepared.  (=

karen tricked mary telling her she'd won a lottery ticket... i forget the details, but mary bought it hook line and sinker.  when karen went to try the same trick on danny she could barely get it out before she blurted --' no sir, i cant lie to you!'  haha  that one was on karen!  we laughed as we recounted it!

john s had been sick and was just returning and not really feeling too well.   the ruthless mascot was having a deep and meaningful conversation with him and then said that while he'd been away she'd given 2 weeks notice  and really only had about a week and a half before she was gone.  ouch!  bad mascot bad!!  within seconds, within the safety zone, she said aprils fools!  he smiled..   he'd been tagged early in the day too!   i told him about a joke that i'd planned on someone else still unplayed. 

karen was playfully pranked a few times, but i forget the details.  i sure hope they got her good! 

johanna told ruby that the director wanted to see her!  our director is fun-- i bet she smiled the whole time! 

we gathered together as a group having a discussion on several points when that bad mascot casually shared a few people who would be swapping groups... for about 4-5 seconds as the group thought... hummm???     and then she said april fools!  MAN!  did the room laugh! it was the best group laugh of the day!

then we were on an outting--micah, john g, and scott.   oh we played the best foolery on that outting!          giggles... people will laugh about that one for some time to come!

oh just too many fun moments to share them all well, but well we will remember them! 

its nice to laugh, especially when all laugh together!  its rumored to even be medicine!

the pits

the pits
how it feels to be in a wheelchair
by charlene

being in a wheelchair is the pits i tell you all
even if your wonderful it will make you feel quite small
the normal lil things you would simply like to do
never come as easy for me as for you~

you must always find a different way
whether its for work or whether its for play
its a struggle to know just how to adapt
when like me to a wheelchair your strapped

yet even so, when your finished its good
you didnt give up, you did what you should
at least you could move, at least you could give
i suppose there are worse ways to live

i remember the days when i could move about free
it was like WOW'!  as big as the sea
i didnt feel lowly or less than or small
i didnt have to worry about what if i should fall.

i'm the same as you i know this inside
yet never i feel it no matter how hard i've tried
i'm happy dont misread me, i laugh often, i'm smart
but i feel small if you peek inside of my heart

being in a wheelchair is the pits i tell you all
even if your wonderful it will make you feel quite small
being in a wheelchair is hard, yes this is true
its hard for me, it would be hard for you too~

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~

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

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!

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?

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!