« January 2005 | Main | March 2005 »

what can i do

what can i do
by mary

i know that i have problems talking
and being understood
still i have some language
even if others dont think its too good

but i have this friend i see each day
who can not speak a word
he uses not a bit of sign
i worry he's not heard

i ponder long and deep and hard
to know what i should do
he has the very same feelings
just as strong and just as true

day after day i see him there
just passing his time away
i know he's thinking something
i'm not sure what to do or say

i worry he'll fall through a crack
and no one will ever see
he has to feel so alone
hes the same as you or me

'he thinks! he feels!' i want to yell
but how do i get through
i want the world to notice him
i never want him blue

hes kind and sweet and a gentle man
he helps. he shares. he smiles.
its not fair that he cant talk
its not fair his lonely trials

i dont think i could be so strong
as i see him every day
i just wish i could do something
to brighten up his way.

Posted by group mascot on February 27, 2005 at 09:24 AM in mary's writings | Permalink | Comments (5) | TrackBack

sweetest souls on earth

the sweetest souls on earth we see
come packaged different from you and me
we watch them every single day
they are lower functioning in every way

yet their precious value calls out to us
not to leave them  in the dust
we wonder so as days goes by
if these darling souls inside do cry

wanting more touch, wanting more care
is it ever more than they can bear?
its easy for some just to let them be
this bothers us, so we raise a plea

do not forget our tender brothers
remember our sisters, these gentle others
please dont let them all alone
they have so little to call their own

invest a bit more in their hearts
see they are more than the sum of their parts
a kind word, a walk, a caring touch
these easy things can mean so much

the sweetest souls on earth we see
come packaged different from you and me
we point to them, oh hear our cry
they are just as important as you or i

by  mary, scott, danny and john s

Posted by group mascot on February 27, 2005 at 09:05 AM in group writings | Permalink | Comments (1) | TrackBack

moth jokes collected by micah

why did the moth nibble a hole in the carpet?
he wanted to see the floor show!

what do you get if you cross a firefly and a moth?
an insect who can find its way around a dark closet!

whats the biggest moth in the world?
a mammoth!

what do insects learn at school?

what insect lives on nothing?
a moth, because it eats holes!

how do stones stop moths eating your clothes?
rolling stones gather no moths!

keeeeeep laughing!

Posted by group mascot on February 23, 2005 at 05:18 PM in micah's writings | Permalink | Comments (3) | TrackBack

second life for the world! by john s

second life for the world!  by john s

i wanta write to my peers that they have hope, inspiration, and direction. i wanta write to non-disabled world to give them insight, knowledge and to provoke them to action.  the internet offers so many tools now.  there are so many ways it can help.

right now i have two primary places i visit when i'm online, second life and our blog.  i've also used the internet to study countries and current events.  these days i'm eager to interact with the world in my small allotment of online time. second life and the blog are equally important to me for different reasons. they have both increased my personal sence of self worth. they offer channels to contribute what i have to offer to the world. everyone hs something to offer. my virtual self has the voice i've always wanted to have and in many ways it allows me to be the person i feel i was born to be.

i wish i had a computer at home so i could be online more. i also wish i had a staff who knew how to use it and would run it for me. infact i wish this for all the disabled who want a voice because of all its done for me.  we need more people who can lend themselves to drawing us out and assist us with technology, type what we want said, follow our directives, be our hands.  the world needs more people like my mascot who find joy in doing so.

if i had unlimited access to the internet and a computer i would begin investing my time learning, blogging, playing sl(second life), take a graphics class so i could create expressive artistic thngs, i'd write about my experiences, the many lessons i've learned, i want to share this with the world. 

some specific things i've gotten from sl and the blog. (not a complete list) i feel i have the chance to meet folk and potentially form quality friendships. i can create things i see in my imagination. i feel respected. its my chance to be seen and known. i feel like i suddenly count. i've learned new computer skills and feel it lets me get my voice out. its given me a way to give back to my dayprogram (helped get them the new computer). it gives me a chance to hear back from others how i effect them. i'm excited to speak to the world. i want them to hear and know. i'm hopeful for what it will grow into.

its like being rescued after drifting what seemed like a lifetime at sea. like a huge and heavy weight being lifted. i'm expectant and hungry for the more! like a door i've been banging on was finally opened, or like being born for the first time. it feels like what i imagine it would be like to suddenly be able to walk. or how i imagine an innocent man whose been locked up wrongly feels when he's finally set free. at times i just want to cry. i feel like an artist with a paint brush. i fill with excitement and wonder when i think of the future now.

it gives me a chance to call my own shots. most 32 year olds are allowed to do that without question. for me people are always talking about giving me choices and empowerment, but all too often they just take it away! then they expect me to feel good and put my seal of approval, my blessing on the process.

thinking of the future there are many things i hope will happen.  i'd like to see an exodus of people leaving the boxed in worlds we have known our whole lifes and migrating to the new world... the virtual world... the internet...  where they can know what i have known.  we hear that platitude that we are not our bodies.  using the internet allows us to not be only our bodies.  it feeds the soul and allows it to manifest itself however it seems fit.

i'd like to see more people equiped with both hardware to support their assorted needs, as well as train up caregivers who act like human interfaces as needed.  these caregivers looking into the heart and soul of the people they work with becoming their hands, their voices, operating their computers when necassary.  not just people who will cook for us and clean for us, but who see us inside of ourselves and assist us in being who we were born to be, and who ENJOY  it!

a personal dream i have is to see something simular to the brain computer interface technology released to the masses.  a computer chip implanted which we can use our very well developed brains (via brainwaves) to control a mouse, a keyboard, and be released to the world we've been imprisioned from.  the technology is out there and slowly, ever so slowly, it grows.  i yearn to see this for many. i want it so badly for myself.   i also want such freedom for others.   

i dream we are on the brink of a new time for people with extreme physical challenges.  i see the vast online world as part of the answer.  virtual communities like second life filling in the gaps that the physical world leaves gaping.  for me, and i can only speak for myself, its been the most transforming thing to happen to me in all my adult life.  the world should know.  others should profit too.  the time is now to move forward and leave this season behind.

Posted by group mascot on February 23, 2005 at 05:12 PM in john s's writings | Permalink | Comments (4) | TrackBack

the big challenge of my life, by john s

the big challenge of my life by john s

i know i'm an intelligent man. i'm 32 and have never found a tool that will let that intelligence out. at times i knew the solution to things, but couldnt share. or had a valuable opinion but couldnt get it out. i've had questions burning inside that i could never find the answers to, because i couldnt ask them. its perplexing always looking for a way to get things out of your head so folk know them and to effectively communicate. lots of times i've had vital contributions but they could never be made.

part of the struggle is time, even when you have a listener who can actually hear you. theres rarely enough time to complete what i have to say. this is frustrating. it can easily take 30 min to isolate what it is i had to say.  sometimes things just get loose and open up... flowing even... and then some other time-oriented demand stops us cold in our tracks. i'm not ready to stop yet! i was just getting warmed up! i find these times most challenging. so many feelings rush though me.  i'm so into it, invested... finally things are getting out and then suddenly, as if totally unfairly, i have to stop. but cant you hear me?? i dont want to stop!!

i know people are busy!  i know they have OTHER things to take care of.  but... arent i important too?   and whats more urgent in my personal care needs than hearing what i have to say?  too often your tv show or phone call to your friend or juicy staff to staff conversation take front stage.  it gets old hearing reason after reason after good reason as to why something else is more important. 

its the soul of a person which makes them the most valuable.  communicating is whats the most important to me, and all these other 'supposibly' vital things ALWAYS take rank.  seems to me the most important thing of all slips through the cracks without even being noticed.  feels like the same story, day in and day out, "be patient we'll get back to that".  more often than not, no one does.  its almost more than i can bare sometimes.  why am i not important too?  it hurts me so.  i know my peers go through the saaaame things.   

we need better speech aides for those who can use no limbs and have no body control.  we need more people who can lend themselves to drawing us out and assist us  with technology, type what we want said, follow our directives, be our hands.... human interfaces.

sometimes the non handicapped miss the point on what's important in the world, or perhaps more accurately, in our world. in all the busyness they lose track of things.

yes its hard not being able to move my body the way others do.  yes its hard having to rely on others to care for my most basic of needs.  yes its been hard living my whole life unable to take myself from one room to another. but the hardest challenge of all for me has been not being able to communicate, not having someone to take the time to listen.  being denied heart to heart expressions.

i'm not angry or mad, perhaps i have the right to be.  i'm a gentle kind man, not angry.  anger has never gotten me anywhere.   what i want is for things to change.  its possible for them to change.  i want people to finally understand that individuals like myself all accross the globe are less interested in the floor being mopped than in someone hearing us, taking the time for our souls.  we shouldnt have to give up who we are just so some common task can be completed.  we're not second rate people! how do you think we feel when all too often what your busy with is your own personal stuff.  people lose whats vital and settle for what looks good.  why dont all the myriad of rules for our care include just one on listening to us each day?   

i have so much to give. it feels like its bursting out of me, like an overstuffed popcorn bag in the microwave popping and bursting.

i wanta stand up and shout, ' we are people too! just as much as you! someone take notice! someone take the time to listen! someone help us to be set free!!'

for me, and all those like me around the world, HEAR US! SEE US! CARE!  UNDERSTAND!  oh please, wont you understand?

Posted by group mascot on February 23, 2005 at 05:05 PM in john s's writings | Permalink | Comments (2) | TrackBack

i hear them

i hear them
by the mascot

i see them now, i see them
all hoping for an ear
reaching out to all who'll come
to come ever  near

i hear them now, i hear them
expressing as never before
pushing and pressing and breaking down
every obstinent door

they are small in their own eyes
these keepers of my soul
feeling only weaknesses
they never feel quite whole.

they do not see their wisdom
which surpasses  you and i
they do not know their power
though its now begun to fly

while they dont speak as easy
and take time to understand
their words now echo far and wide
into distant lands

while in quiet times of composure
they leak out who they are
these humble times now hurl them
as though shooting stars

i see them now, i see them
speaking for the crowds
taking away the mysteries
ripping apart the shrouds

i hear them now, i hear them
as loudly as can be
not  a little one among them
and setting captives free

Posted by group mascot on February 21, 2005 at 06:06 AM in Mascot's Musings | Permalink | Comments (0) | TrackBack

missing you

friday was a bit hard for us.  we really wanted to use the computer!  we tried and tried to find time, but the day was too full of other things and the mascot couldnt steal away anything extra for the computer.    )=   we all hoped that we'd be able to get on for at least a few moments.  when she came into the room at the end of the day to share we could not get on the computer, a dark cloud fell on the room.  it got very quiet.   the mascot was as saddened as we were, but could do nothing.  eyes filled with tears.  WE WANTED TO PLAY!  one of us didnt wanta take no for an answer and began to ask and reask.  the mascot explained there was not even 5 minutes of time we could use. 

john wanted to fly the new airplane... he also wanted to go visit hell..  the group had had so much fun doing both these things.  he and scott were the most upset about not being able to play.  the mascot noted both were the least verbal of the active players.   'does it feel like you've lost your voice when you cant play guys?' she asked, both chime in loudly with their yes's.   'do you feel you are able to be yourself when you are online?'  more yes's. ' when you cant play does it feel like a part of you is lost?'  more yes's, from the whole room.   uggh.   we feel so powerless!

what to do, what to do!  teary bloodshot eyes filled the room as the mascot attempted to lay out a computer plan for monday.  monday seems so far away.  'do you want me to post this on the blog ya'll?  do you want me to tell folks how much you missed them?'  more yes's.  'kk then, its the best i can offer you, but i'll post it on the blog so folk know you were thinking of them, missing them, and wanting to see them.'  they are slightly comforted, but not by much.  i promise to also trek down to see john l and give him something they've made for a mutual friend in california. johns traveling there monday.  they like that.  that makes it a tad bit better, but nothing will take the ache away wholly.    i'm beginning to see even more, how important this is becoming.  i thought i knew, but this took it to a new level.  its a rather depressed room we are all in.

the program day ended.  two of the group left uncomforted, one still with bloodshot eyes fighting not to cry.

so... everyone who may read this....  wilde was missing you.  and they'll see you soon!

Posted by group mascot on February 12, 2005 at 11:04 AM in group writings | Permalink | Comments (2) | TrackBack

mary on her perfect day

my perfect day starts with sleeping in.  then my pca cooks one of my favorite breakfasts for me of eggs, toast, sausage, oj, and coffee! 

shortly after finishing theres a ring at my door and its my friend jack whose come to take me to the cemetary so i can see my mom.  i love to go visit her and never get to do so as much as i like.  we stop on the way for a huge spray of red roses!  they were her favorite flower, so i get the biggest spread they can make for her. 

the air is fresh and warm, must be in the 80's and feels so good on my skin.  we spend a lil less than two hours there and head home.  my mom and i had a good visit as always.  its been a calm and smooth day so far, those are always welcomed.  jacks been nice to be with.  hes a good man.

when i get home its time to freshen up a lil before going to get scott in our rented limo.  its white and has a beverage bar and tv we can watch while we ride.  we're going to the new mall.  on the way we pick up the mascot because i want her in my perfect day.  we have some soda from the bar while we travel. 

omg!  when we get to the mall scott and i are the 88th, and 89th visitors and each win 1 milllion dollars!  who would have ever dreamed?  we are so excited we dont know what to do!  the malls not very crowded at all so we decide to go get our hair done.  each of us come out styling and looking so good!  scott says my hair looks nice and that makes me feel great.  sometimes my hairstyle makes me crazy, it never does what i want it to.  but today i look like a star!!   i cant tell you how good that feels~

after we come out looking like magazine models, we go clothes shopping!  since we are now rich, we buy an new outfit for each day of the month.  there are so many packages and bundles we have to get someone to help us to carry them!  when we get back to the limo the driver flirts with me.  i blush and tell him its not true, but he keeps flirting anyway.  i just shake my head and smile. he takes us to my favorite resturant, bickfords!!   

at the resturant everyone is unusally friendly to us making us feel very comfortable.  scott picks his fav item from the menu.  i pick mine which is a cheeseburger with french fries~   we both have ice cream chocolate of course!  we are having so much fun and the silly mascot is always finding a way to make us laugh.  at least she didnt draw a mustache on her face this time, thank god!  we leave a huge tip before we head out and thank them for such kind service.

as we drive home, dropping everyone off along the way we think about all the fun we had.  we won a ton of money!!   sure was a blast shopping without worries or rushing.  our food was good, the company great...  we look like movie stars...   and it was so nice to share all this with scott!

when i get home my house has grown.  i dont know why or how, but its twice as big as when i left.  i get excited, eager to go inside.  when i open the door with my electronic key i see its filled with new furnature... comfortable and pretty new furnature.   there are switches everywhere that i can use myself to turn things on or use them by myself!  i'm sooo excited...  i peek around a  new corner and omg!!  look!!  theres a computer of my very own!!  its got all sorts of adaptive and custom voice activated gismos !  i turn it on and second life has even been installed on it.  who did this i wonder??  but i'm too caught up in the excitement to think much about that.

i go inworld and spend 3 hours!  only three times have i played more than an hour... but now there are noooo time constraints... no rules but my own!   so i stay and play and explore and just have a blast!!   

oh my i'm getting sleepy tho.. my pca fixes me a hot mineral bath were i soak till i almost fall asleep.  finishing my bath i get into my new deluxe super soft beautiful white bed!  its covered in stuffed animals-- and even my favorite is there!  its a big black furry teddy bear that my mom gave me when i was a baby.  (my mom didnt really give me one like this, but i imagine her to have.)  the bed is sooo comfortable, and my furry bear snuggles so well that in no time i'm off to dreamland... sweetly dreaming of the good things of this day, and all the good the future holds.

and thats my perfect day!

Posted by group mascot on February 12, 2005 at 09:49 AM in mary's writings | Permalink | Comments (4) | TrackBack

Online Social Networks (OSL) 2005 - Roundtable Meeting in Second Life!

There is a very interesting Online Conference going on Feb 9-23 called "Online Social Networks (OSL) 2005"

Here's a description:

OSN2005 will be a summit for all those interested in working with social networking processes, tools, and media. In addition to attending many workshops, panels, and presentations by leading experts and practitioners, attendees will have the opportunity to be part of a community with a significant role in defining the future direction of online social networking. If you want to help shape this industry, come to OSN2005!

During the OSN2005 summit we will co-create and publish a manifesto describing what we want and need from online social networking tools. What are the key criteria for choosing and assessing OSN products and services? What gaps exist in currently available software and related tools? What needs to happen before it's common knowledge that OSN products and services can deliver significant value? What are the most promising developments in the OSN industry?

Attendees will be invited to participate in a series of focus groups to provide feedback on current OSN technology and articulate specific suggestions for future features and developments. A series of White papers based on these focus groups will be shared with venture investors who want to know where to place their bets in this industry.

I'm attending this conference, and it's already turning out to be a fascinating meeting of minds and ideas. Last night I was speaking online with one of the conference organizers, and I suggested that they have a "break-out roundtable discussion" using the Second Life environment. She thought that was a great idea, and encouraged me to step up to the plate and organize it myself. So I did. :)

We'll be having a "Second Life VIrtual Roundtable" meeting on Saturday, February 12, at 6:00pm Eastern Time on the Second Life sim named "Live2Give."  I volunteered to host it and have it on the "Live2Give" sim since it's a large publically accessible area with plenty of space for lots of people to meet.

I'd like to extend the invitation to everyone reading this blog, whether or not you are "attending" the conference.  Please join us!   The meeting in Second Life won't be anything formal, just a chance to have a friendly chat with other people at the conference who are interested in the future of online social networks and to share ideas about online communities.

To join the meeting, log on to Second Life and teleport to the sim "Live2Give."  If you have any trouble just send me an Instant Message in Second Life (my name there is John Prototype).

Hope to see you then!

Details on how to join the meeting:

1) If you don't already have an account on Second Life, sign up here.  It's a free 7-day trial, so if you don't care to continue to use Second Life after the meeting you can cancel your account within a week at no cost.

2) Log on to Second Life.

3) Click the MAP button at the bottom of the screen.

4) In the MAP window that pops up, look to the right and click on the REGION pulldown menu.

5) Scroll down and select "Live2Give"

6) Click the TELEPORT button just below the pulldown menu.  You will be automatically transported to Live2Give island, and you'll be dropped right into the meeting area.

7) If you log on to Second Life and have any problems, send an Instant Message to me (John Prototype), or contact me on AIM (DangerJohn3) if you have any general problems logging in.

------------UPDATE Feb 13 ------------------
Here is a transcript of the meeting (with photos).

Posted by John Lester on February 11, 2005 at 01:54 PM in John Prototype's Musings | Permalink | Comments (1) | TrackBack

Video Projector for Wilde!

As mentioned in this previoius post, we have been applying donations to Live2Give towards the immediate goal of purchasing a video projector for the group of people (aka, "Wilde") who access Second Life from the Evergreen Center.  Well, that goal has been achieved!

Our deepest thanks go out to the people who donated, including the last donor who contacted us and basically asked "how much more do you need?"  Thank you all for your generosity and desire to help Wilde.  The video projector has arrived in the mail, and we'll be taking pictures of the Wilde group using it to share on this blog.  I expect you will see a lot of very happy faces. :)

From this point on, we plan to use any donations to help expand our Live2Give project to help more people, not just the group at the Evergreen Center.  We're starting to try and reach out to other assistive living centers, both locally and around the world, who may be interested in accessing Live2Give Island but may need better computer equipment to facilitate this.   We'll keep everyone posted about exactly how we are using any donations, so stay tuned.

Thank you again.

Posted by John Lester on February 11, 2005 at 01:38 PM in John Prototype's Musings | Permalink | Comments (1) | TrackBack